Wanted to do a quick update. This is going to be nothing special. Perhaps even hilarious since I'm delirious from being sick...
Yes the joys of being sick. Some how I picked up a virus that turned into a double ear infection and the start of a sinus infection. It started with my typical crappy flare up symptoms, but the more serious ones- sore throat with lump in right side of my neck. I'm always fearful when this happens and it progresses into more because there is always the risk I will end up needing to go to the hospital. Why? Because when I first got sick it progressed so quickly (over night) and I should've been in the hospital but my damn stubbornness. Of course I didn't realize how sick I was back then. Anyways, I'm on antibiotics so all should be good soon. I wish I could say it gets better in a day or two but not when you have BD. The typical URI's, ear infection, sinus infections, etc. always last longer than they should ever be allowed to. In fact, it should be against the law for them to last longer than a week. Seriously, if you think having a cold for a week is bad, try getting Behcet's and having it last a month or more, plus all your other symptoms. It's pure torture.
Last time I had an ear infection? 2006 after my lapraoscopy. Funny how you remember that stuff right? I do not miss them at all! It's affecting my hearing-everything is muffled and crinkly sounding.
Here's what someone says to me: "Hi Chrissy, what are you up to today?"
Here's what I hear: "asdlfkasdh hdsfong sdkas phssss llgoasd."
Then I have to say "what?" about 3 times before I hear them correctly. Or I just make up what I think they said, which can make for some interesting conversations.
Hey everybody, guess what I'm still waiting for? You're never gonna guess...well maybe you will.
Yep, help from the prescription assistance program and MN Care. Awesome huh? I finally had to file a complaint to get help from the prescription assistance program in Allina. It has officially been a little over two months since I asked for help. I've spoken with my worker at least 3 times, each time her saying she's either mailing it to me or my doctor. I even had my doctor call her once! So finally I got someone who knows what they are doing and I received the paperwork Saturday. Thank you Rhonda for your help! Then there's the MN Care. I mailed my application in the second week of October (the beginning of the week), found out they didn't start processing it until October 22 and it takes 4-6 weeks to hear back. Not even sure what to say about this other than, can we get the MN Care workers more help please? I know I've been bitching about these things a lot lately but it's very frustrating. So there.
I started biofeedback therapy but it didn't go well because I was sick. So far it appears to be a lot like yoga- breathing and relaxing exercises. That stuff doesn't work so well when you are coughing and miserable. So will be going back in a couple weeks.
So this is the gist of what's going on. Hope everyone is as well as you can be!
Oh and by the way, did you know you can check in on facebook to have it say "is at feeling like death"?
"Difficulties are opportunities to better things; they are stepping stones to greater experience. Perhaps someday you will be thankful for some temporary failure in a particular direction. When one door closes, another always opens." ~Author Unknown
Sunday, November 18, 2012
Monday, October 29, 2012
The Woes of Waiting...
It's been a while since the last post but for good reason. With winter approaching and the weather changing, it's been wreaking havoc on my body. I've been busy with doctor appointments as well and dealing with a flare up of symptoms. So where to start, where to start...
I started pool therapy last week. My body feels good when I'm in the water. Hot tubs relieve my joint pain. The therapist, Kim, is really nice. I'm her first Behcet's patient. Imagine that :) I told her I'd probably be her first and last since this is not something we typically do and given how rare the disease is. Anyways, we started slow, with things like walking back and forth and moving the legs. I could feel it the moment I got out. I came home and slept for 4 hours. The following 3 days were hell, if not longer. I'm going to give it one more shot but if it results as it did the first time, I will have to say no as I cannot tolerate being any more exhausted and feeling like crap than I already am.
I keep meaning to post about my toes. I've had a very odd thing happen at the end of August. I was out walking at the zoo for a prolonged time, which is not something that happens ever. In fact, I can only recall one other time where I was walking for so long and that resulted in vaginal bleeding. So what happened this time? Once I got home I realized how painful my toenails felt. My feet and toenails were throbbing, they actually felt bruised! What resulted in the following week was my big toenails turned black and blue. With the right side being the worse. The right side actually had crusted blood under it. And still does. The best that I've come up with after talking with other BD'ers is that this resulted from the trauma of walking and swelling. I can't even blame it on my shoes as they are not new and not old. Wish this was the case. So pictures are below.
I'm still waiting to hear on the rx assistance program for the Kineret. I'm also waiting to hear from MN Care on whether or not I qualify. I'm hoping it will be today. Or at least this week since November 1st would be the first day qualifying.
Something else I need to bring up that truly saddens me. There are some really sick people out there. I've recently learned there are people out there who fake diseases like this to get disability. They actually fake to join the groups. There was a person who did this in a very private BD group. I unfortunately cannot give much details other than this person was clearly faking. Between a picture and her story, anyone who bought it is a moron. Sorry, but when things don't add up you should question what's going on. I really wish I could have shared the pic but I cannot. It scares me that people are sick enough to do this. If only they knew what this disease was really like, they wouldn't being trying to fake it. I'll leave it at I hope this person gets the mental health they so clearly need.
So with this all being said, I will try to end it with a funny quote. I hope everyone is having a good day and check out the toe pics below :)
"Toe: A part of the foot used to find furniture in the dark”` Unknown -wish this was the case in my situation, sort of :)
The pic of the toe that is entirely bruised is the right one. I've done the best I can getting a photo of the blood crusted underneath the toe.
I started pool therapy last week. My body feels good when I'm in the water. Hot tubs relieve my joint pain. The therapist, Kim, is really nice. I'm her first Behcet's patient. Imagine that :) I told her I'd probably be her first and last since this is not something we typically do and given how rare the disease is. Anyways, we started slow, with things like walking back and forth and moving the legs. I could feel it the moment I got out. I came home and slept for 4 hours. The following 3 days were hell, if not longer. I'm going to give it one more shot but if it results as it did the first time, I will have to say no as I cannot tolerate being any more exhausted and feeling like crap than I already am.
I keep meaning to post about my toes. I've had a very odd thing happen at the end of August. I was out walking at the zoo for a prolonged time, which is not something that happens ever. In fact, I can only recall one other time where I was walking for so long and that resulted in vaginal bleeding. So what happened this time? Once I got home I realized how painful my toenails felt. My feet and toenails were throbbing, they actually felt bruised! What resulted in the following week was my big toenails turned black and blue. With the right side being the worse. The right side actually had crusted blood under it. And still does. The best that I've come up with after talking with other BD'ers is that this resulted from the trauma of walking and swelling. I can't even blame it on my shoes as they are not new and not old. Wish this was the case. So pictures are below.
I'm still waiting to hear on the rx assistance program for the Kineret. I'm also waiting to hear from MN Care on whether or not I qualify. I'm hoping it will be today. Or at least this week since November 1st would be the first day qualifying.
Something else I need to bring up that truly saddens me. There are some really sick people out there. I've recently learned there are people out there who fake diseases like this to get disability. They actually fake to join the groups. There was a person who did this in a very private BD group. I unfortunately cannot give much details other than this person was clearly faking. Between a picture and her story, anyone who bought it is a moron. Sorry, but when things don't add up you should question what's going on. I really wish I could have shared the pic but I cannot. It scares me that people are sick enough to do this. If only they knew what this disease was really like, they wouldn't being trying to fake it. I'll leave it at I hope this person gets the mental health they so clearly need.
So with this all being said, I will try to end it with a funny quote. I hope everyone is having a good day and check out the toe pics below :)
"Toe: A part of the foot used to find furniture in the dark”` Unknown -wish this was the case in my situation, sort of :)
The pic of the toe that is entirely bruised is the right one. I've done the best I can getting a photo of the blood crusted underneath the toe.
Tuesday, October 9, 2012
No insurance, No medications...unless you're a millionaire
I recently put a photo of myself on Facebook directed toward Mitt Romney as I fall into his 47% who need help from the government. Anyways, this post is not to tell you who to vote for as I would like to keep politics off my blog as much as possible, but I think this is important to talk about healthcare as a basic human right. I'm sure everyone is sick of politics by now anyways, right? I would like you to read my post and keep in mind what you would do if you fall into my situation.
What's my situation? I quit working at the end of March due to my Behcet's symptoms worsening. I lost my health insurance in July. I don't qualify for MN Care until November 1st. I say qualify but it's more like I can't even apply to get it until November 1st as you need to be without insurance for a minimum of 4 months. There's no guarantee I will get it since I get a small amount of money from long term disability through my work which is something I paid for when I was first hired with Allina. I have Allina Partners Care right now, which is not health insurance but it allows me to see doctors at the Allina Clinics and not be billed for the office visit. This will expire November 30th. So why am I complaining right? I have no prescription insurance, so I have to pay out of pocket for medications. I currently have 4 medications I am waiting for approval (through Allina prescription assistance program), which a fairly long process as my worker through Allina needs to send it to my doctor, to me, and then contact each drug company that manufactures the medication. Then of course it needs to be approved through them and sent to me. So I am waiting for the approval of a medication that may help me get better. What are the chances I will go into remission on my own? Extremely rare. I have never heard of it without meds. I've heard some people have a relief of their symptoms while pregnant but it returns after the pregnancy. So how am I suppose to get better without these meds? Do you have any idea how expensive it is for medications without insurance? I ask that next time you get your medications filled ask the pharmacy how much it costs for your medications without insurance. They will be more than happy to give you a quote. Now keep in mind if you had my disease, you are looking at around $2,000 for most medications used to treat the disease. Or I should say a main medication to treat it- the injectables specifically. So add that to your bill. Keep in mind most people with Behcet's are on multiple meds to manage the disease- usually an oral or two along with an injectable or IV med but each situation is different with Behcet's.
Now I challenge you to prioritize what medications you can pay for out of pocket- what do you need to most to get through the day- is it blood pressure pills, pain pills, heart medications, birth control?- while still managing to pay your rent and what other bills you have. You have to decide whether or not food and rent is more important than your medications. Think I'm joking? This is a real situation for many people. But we don't need the government giving us help or allowing insurance for everyone right? For those of you who think healthcare isn't a "right" for everyone, I honestly hope you are placed in my situation or something similar. Your mind will be changed very quickly once you have to decide medication, food, clothes for your children, etc.
Think about those who have no long term disability or their clinics don't offer something like Allina Partners Care. What if it was your grandmother, grandfather, mom, dad, or child who was in this position? Would you still think the way you do?
Alright, enough about health care. I saw my neurologist yesterday. She is the best! She was shocked at the amount of shit I've been dealing with since I last saw her. She agreed I did the right thing starting the butterbur and not doing the botox. Her words were something along the lines of "I agree with the botox decision. When you think about it how many people with Behcet's do you think have had botox and we have no idea how you'd react to it. How many studies have they done on it? Plus I've heard it's painful." She didn't scold me for not starting the gluten free diet, in fact she says I have enough on my plate so let's wait until I can handle it. She wants me to see a TMJ specialist to see if that's why my temporal headaches are so bad. Problem with that is I have no dental insurance and cannot go outside of Allina for medical without paying out of pocket. There's something else to think about: what would you do with no dental? It's already ridiculous enough for dental work but what if you need something like a root canal or crown? Any idea how much it cost? I can tell you because I've had to deal with it. Let's start with a quote I got for a basic filling to get done- I had a filling fall out a week ago and was quote $185 to replace it. Root canals are around $400-600. Crowns are around $900-1000. So add that to your bills too.
UPDATE: I just found out from a fellow BD'er how much remicade costs a month. Go on, take a guess. It's every 2 weeks IV medication. Drum roll please... $16,000! By the way, those of you who think that if you have insurance or rx assistance card you should be able to afford your meds- not everyone. Why? Because not all are generic, not all insurance cover meds completely, not all rx assistance lowers them enough to be affordable- especially when you have a family to take care of and there is only one income coming in. So please before you say hateful comments or assume things, wake up and realize we are NOT in a perfect world.
A random thing I've been thinking about lately is how long I've truly been sick. Looking back some of my symptoms started way back in 2008, possibly even 2007. But I'll talk about that in another post:)
I want you to take a look at my medication list. These are the medications I am on or should be on currently to help manage my disease, aside from the birth control (which is $22 for each pack which lasts me 3 weeks). All of these I need to either manage BD itself or the complications I get from it.
percocet (pain)
sanctura (urinary)
kineret (Main med for BD)
ginger root (nausea)
butterbur (Migraines)
piroxicam (pain)
lyrica (pain)
flexeril (muscle relaxer)
hydroxyzine (nausea)
fish oil (for BD- this is good for any inflammatory disease)
omeprazole (I get heartburn from some medications)
diflucan (for chronic yeast infections- topical and vaginal due to the BD)
vitamin D 2,000 IU daily (mine is low due to active BD)
vitamin B injections monthly (mine is on the lower end of normal, unsure if it's from BD or not)
magic mouth wash (for mouth sores/inflammation)
albuterol inhaler (for when I get sick with an URI or when I'm around cigarette smoke, same with the nebs)
albuterol nebs
nystatin powder (for topical yeast infections due to BD)
compazine (nausea)
loestrin (BCP)
triamcinolone cream (for mouth/vaginal ulcers)
stool softners (due to narcs)
claritin (for allergies, not BD but it's another cost)
You know what's scary? My allergy list is almost as big as my medication list. I am now officially at 17 allergies/intolerance's. Wow, huh?! Anyways, I hope you take this to mind when you think about whether healthcare is a basic human right. Why? Because it may be you some day in this position.
"So long as we have enough people in this country willing to fight for their rights, we'll be called a democracy." ~Roger Nash Baldwin
What's my situation? I quit working at the end of March due to my Behcet's symptoms worsening. I lost my health insurance in July. I don't qualify for MN Care until November 1st. I say qualify but it's more like I can't even apply to get it until November 1st as you need to be without insurance for a minimum of 4 months. There's no guarantee I will get it since I get a small amount of money from long term disability through my work which is something I paid for when I was first hired with Allina. I have Allina Partners Care right now, which is not health insurance but it allows me to see doctors at the Allina Clinics and not be billed for the office visit. This will expire November 30th. So why am I complaining right? I have no prescription insurance, so I have to pay out of pocket for medications. I currently have 4 medications I am waiting for approval (through Allina prescription assistance program), which a fairly long process as my worker through Allina needs to send it to my doctor, to me, and then contact each drug company that manufactures the medication. Then of course it needs to be approved through them and sent to me. So I am waiting for the approval of a medication that may help me get better. What are the chances I will go into remission on my own? Extremely rare. I have never heard of it without meds. I've heard some people have a relief of their symptoms while pregnant but it returns after the pregnancy. So how am I suppose to get better without these meds? Do you have any idea how expensive it is for medications without insurance? I ask that next time you get your medications filled ask the pharmacy how much it costs for your medications without insurance. They will be more than happy to give you a quote. Now keep in mind if you had my disease, you are looking at around $2,000 for most medications used to treat the disease. Or I should say a main medication to treat it- the injectables specifically. So add that to your bill. Keep in mind most people with Behcet's are on multiple meds to manage the disease- usually an oral or two along with an injectable or IV med but each situation is different with Behcet's.
Now I challenge you to prioritize what medications you can pay for out of pocket- what do you need to most to get through the day- is it blood pressure pills, pain pills, heart medications, birth control?- while still managing to pay your rent and what other bills you have. You have to decide whether or not food and rent is more important than your medications. Think I'm joking? This is a real situation for many people. But we don't need the government giving us help or allowing insurance for everyone right? For those of you who think healthcare isn't a "right" for everyone, I honestly hope you are placed in my situation or something similar. Your mind will be changed very quickly once you have to decide medication, food, clothes for your children, etc.
Think about those who have no long term disability or their clinics don't offer something like Allina Partners Care. What if it was your grandmother, grandfather, mom, dad, or child who was in this position? Would you still think the way you do?
Alright, enough about health care. I saw my neurologist yesterday. She is the best! She was shocked at the amount of shit I've been dealing with since I last saw her. She agreed I did the right thing starting the butterbur and not doing the botox. Her words were something along the lines of "I agree with the botox decision. When you think about it how many people with Behcet's do you think have had botox and we have no idea how you'd react to it. How many studies have they done on it? Plus I've heard it's painful." She didn't scold me for not starting the gluten free diet, in fact she says I have enough on my plate so let's wait until I can handle it. She wants me to see a TMJ specialist to see if that's why my temporal headaches are so bad. Problem with that is I have no dental insurance and cannot go outside of Allina for medical without paying out of pocket. There's something else to think about: what would you do with no dental? It's already ridiculous enough for dental work but what if you need something like a root canal or crown? Any idea how much it cost? I can tell you because I've had to deal with it. Let's start with a quote I got for a basic filling to get done- I had a filling fall out a week ago and was quote $185 to replace it. Root canals are around $400-600. Crowns are around $900-1000. So add that to your bills too.
UPDATE: I just found out from a fellow BD'er how much remicade costs a month. Go on, take a guess. It's every 2 weeks IV medication. Drum roll please... $16,000! By the way, those of you who think that if you have insurance or rx assistance card you should be able to afford your meds- not everyone. Why? Because not all are generic, not all insurance cover meds completely, not all rx assistance lowers them enough to be affordable- especially when you have a family to take care of and there is only one income coming in. So please before you say hateful comments or assume things, wake up and realize we are NOT in a perfect world.
A random thing I've been thinking about lately is how long I've truly been sick. Looking back some of my symptoms started way back in 2008, possibly even 2007. But I'll talk about that in another post:)
I want you to take a look at my medication list. These are the medications I am on or should be on currently to help manage my disease, aside from the birth control (which is $22 for each pack which lasts me 3 weeks). All of these I need to either manage BD itself or the complications I get from it.
percocet (pain)
sanctura (urinary)
kineret (Main med for BD)
ginger root (nausea)
butterbur (Migraines)
piroxicam (pain)
lyrica (pain)
flexeril (muscle relaxer)
hydroxyzine (nausea)
fish oil (for BD- this is good for any inflammatory disease)
omeprazole (I get heartburn from some medications)
diflucan (for chronic yeast infections- topical and vaginal due to the BD)
vitamin D 2,000 IU daily (mine is low due to active BD)
vitamin B injections monthly (mine is on the lower end of normal, unsure if it's from BD or not)
magic mouth wash (for mouth sores/inflammation)
albuterol inhaler (for when I get sick with an URI or when I'm around cigarette smoke, same with the nebs)
albuterol nebs
nystatin powder (for topical yeast infections due to BD)
compazine (nausea)
loestrin (BCP)
triamcinolone cream (for mouth/vaginal ulcers)
stool softners (due to narcs)
claritin (for allergies, not BD but it's another cost)
You know what's scary? My allergy list is almost as big as my medication list. I am now officially at 17 allergies/intolerance's. Wow, huh?! Anyways, I hope you take this to mind when you think about whether healthcare is a basic human right. Why? Because it may be you some day in this position.
"So long as we have enough people in this country willing to fight for their rights, we'll be called a democracy." ~Roger Nash Baldwin
Saturday, October 6, 2012
Geographic what?!
One of my favorite sayings is "Some times you just gotta say what the fuck." I actually had a bumper sticker that said this a couple years back. Can you imagine a nurse driving around with this on her car? Along with a "sterile stupid people" bumper sticker? I made sure NOT to park in the employee parking lot to avoid me getting in trouble:) Anyways, I bring this up because of the my title and what it's in reference to. I've recently learned I have a geographic tongue. What the hell is that right? Exactly what I said. It's when your tongue gets a pretty pattern of white spots, red areas, among other things. It pretty much looks like a map. To be more specific, it's inflammation of the tongue. I've been told it is related to Behcet's, it's not related to Behcet's, it's an autoimmune deal all of it's own but can coincide with Behcet's. All I know is I have it. I've had it for at least 6 months now but didn't realize what it was. Thought I just had a pretty tongue:) I've inserted a pic below of what it looks like when it first starts- it gets much worse. I'm trying to be more vigilant of taking pics but often forget.
In other news, I am waiting for my medications to be covered through the Allina Prescription Assistance program. I cannot say often enough how difficult it is to afford medications without insurance. How am I suppose to get better when I cannot afford the medications? How many people have to go through this monthly? Fucking ridiculous. Yep, the mouth is going today, beware.
What else am I dealing with? Well I had my first fall a couple weeks ago. I went down in the bathroom from fatigue/weakness. Thankfully I wasn't hurt. It'll take more than that to get rid of me folks:) I bring this up so you understand how fatigued and weak you get with this disease at times. I went to an initial physical therapy appointment so I may begin pool therapy. Hopefully this will be good for me. My one concern is it will make me worse off since that is what activity does but there's hope, right? I told the lady I need to take it very slow. I start it in 2 weeks. Also dealing with the usual pain and trying to find the right medication, which I am beginning to think it will never happen. It's very frustrating because I know I will never be completely pain free but if I can be semi-functional, that would be awesome. So I'm off the Oxycontin (evil shit right there) and trying Percocet. For a long time I was OK on Vicodin and Tramadol but then I had to stop the Tramadol and since then I haven't been the same:( This drop in temp isn't helping either right now. We've had 70 degrees to 40 degrees every other day for a couple days which was pure hell on my joints. Now we are at about 35-40 degrees with massive wind gusts. And the "S" word happened today. Snow. Didn't stick on the ground, but put a damper on my pretending winter isn't coming. I go into denial every year.
Anyways, this where I'm at. Waiting, stuck in a corner, etc. One thing I should mention is the butterbur has decreased my headaches, not eliminated them but decreased them. Either that or I'm in a freak time where I have hardly any, which is quite possible as it has happened before. Guess I'm hoping it really is the butterbur. I opted not to do the Botox for headaches since the Butterbur is helping and I'm am concerned that I will have a reaction to it since I have frickin' reactions to EVERYTHING. Think I'm joking? I'm on like number 15 for amount of drug allergies I have, maybe even 16 now. I gave up counting. Also the Oxybutynin did not help me, in fact it made me worse, so trying another new medication called Sanctura. If that doesn't help, then it's off to see a doctor at Metro Urology for more testing, options, etc. Good times, good times...
The other pics below are of me torturing the dog, Coconut, with a witch hat:) I tried for the cats but they weren't having it. And we have Jason and Jacob's nephew over this weekend, so this is Ryder and Jacob hamming it up for me.
No quote or saying down here today because I put one up above:)
In other news, I am waiting for my medications to be covered through the Allina Prescription Assistance program. I cannot say often enough how difficult it is to afford medications without insurance. How am I suppose to get better when I cannot afford the medications? How many people have to go through this monthly? Fucking ridiculous. Yep, the mouth is going today, beware.
What else am I dealing with? Well I had my first fall a couple weeks ago. I went down in the bathroom from fatigue/weakness. Thankfully I wasn't hurt. It'll take more than that to get rid of me folks:) I bring this up so you understand how fatigued and weak you get with this disease at times. I went to an initial physical therapy appointment so I may begin pool therapy. Hopefully this will be good for me. My one concern is it will make me worse off since that is what activity does but there's hope, right? I told the lady I need to take it very slow. I start it in 2 weeks. Also dealing with the usual pain and trying to find the right medication, which I am beginning to think it will never happen. It's very frustrating because I know I will never be completely pain free but if I can be semi-functional, that would be awesome. So I'm off the Oxycontin (evil shit right there) and trying Percocet. For a long time I was OK on Vicodin and Tramadol but then I had to stop the Tramadol and since then I haven't been the same:( This drop in temp isn't helping either right now. We've had 70 degrees to 40 degrees every other day for a couple days which was pure hell on my joints. Now we are at about 35-40 degrees with massive wind gusts. And the "S" word happened today. Snow. Didn't stick on the ground, but put a damper on my pretending winter isn't coming. I go into denial every year.
Anyways, this where I'm at. Waiting, stuck in a corner, etc. One thing I should mention is the butterbur has decreased my headaches, not eliminated them but decreased them. Either that or I'm in a freak time where I have hardly any, which is quite possible as it has happened before. Guess I'm hoping it really is the butterbur. I opted not to do the Botox for headaches since the Butterbur is helping and I'm am concerned that I will have a reaction to it since I have frickin' reactions to EVERYTHING. Think I'm joking? I'm on like number 15 for amount of drug allergies I have, maybe even 16 now. I gave up counting. Also the Oxybutynin did not help me, in fact it made me worse, so trying another new medication called Sanctura. If that doesn't help, then it's off to see a doctor at Metro Urology for more testing, options, etc. Good times, good times...
The other pics below are of me torturing the dog, Coconut, with a witch hat:) I tried for the cats but they weren't having it. And we have Jason and Jacob's nephew over this weekend, so this is Ryder and Jacob hamming it up for me.
No quote or saying down here today because I put one up above:)
Thursday, September 20, 2012
The Self-Pity Days...
Self-Pity: pity for oneself, especially a self-indulgent attitude concerning one's own difficulties, hardships, etc.
Oh the self-pity days...where would I be without them?
Today, along with a couple other days, have been self-pity days lately. Why? Because we sometimes just have to have them when living with this disease. There's no easy way around it. Other don't always understand. Fellow BD'ers do.
What have I been thinking about today? The days where I have to do something and I'm not feeling well enough and don't want to take my walker but have to. The days of walker use have been becoming more and more frequent. Sad but true. How does that make me feel as a 33 year old? Not too great. Mixed emotions. Angry. Sad. Frustrated. Disappointed. All of the above and more. Some days I think I'm getting use to it but then realize I am not. Some days I wonder if that will ever happen? What's the hardest about it? Dealing with the people who's mothers never taught them not to stare at people. Yep, they are out there. Some days there are very many of them. Other days, it's not a problem. Some days I feel like attaching a note on my walker in very small writing that says something along the lines of "Come a little closer so you can get a better look with the words fuck you written in small letter." For those of you who know me, you know this very well may happen some day:) Some days I wonder if they are staring at my gorgeous body, ha ha;) Now you are asking why do I need the walker? For two main reasons: I need the support (a cane will not support me enough) and fatigue (for when I need to sit down and there is no where to sit). Some days when we have to go shopping, the cart is enough for me. We always have my walker in Sue's trunk now for me (and if you're thinking of coming over and stealing it, well...you go right ahead:))
The other self-pity: the mouth ulcers. Oh how I hate these bastards some days. I've been getting them on my tongue lately. However this week my little buddies have planted themselves right under my front teeth on the gum. These ones hurt more than the tongue and like a bastard as I have properly named them. Not too mention the inflammation of the blood vessels in my mouth currently. Oh and let's not forget the lesions on my chest. Thank god tank top season is over.
What else can I possibly complain about? Wouldn't you like to know...the usual pain has been worse. I only have myself to blame for that one since I had two family get-togethers this past weekend. Could I have got out of them? Not a chance on one and highly unlikely for the other. Some things you cannot miss, like my mother-in-laws 50th birthday, which Jason and I paid for. Even though this and the other event were 2 hours long (give or take) and I was able to sit at both. However, they sucked any life left right out of me. Since then? I've been in bed.
The worse part of this weekend coming up? We are suppose to be going to the Renaissance Festival. Of course this all depends on how I feel. Currently it isn't happening but there's hope of me recovering to normal feeling like crap (Kala, that's for you, ha ha:))You know what's bad? When we decide, and I mean me, to bring Jason's nephew, Ryder, who is in a stroller so I can hold on to the stroller for support instead of having to bring the walker. Some days it's easier to explain a stroller than it is a walker. It's just the way it is some days. You may think I'm being over sensitive to what others think but some days I just get sick of having to explain and get sick of people staring. There's hope some day I will get use to it. Or better yet, hope of never having to use it again someday. Or people actually listening to their mothers when they tell them not to stare at others. And btw, it has gotten a little easier than the first time I used it.
The lovely dizziness made a small come back last night. Damn BPPV. I was smart this time and did the Epley maneuver immediately and it wasn't as bad. In two weeks I see my neuro so I will be discussing it with her.
I'm going to stop the self pity for tonight. Hope you all enjoyed the party. Now you can't ever say I didn't invite you to anything:)
“We may encounter many defeats but we must not be defeated.”~ Maya Angelou
Oh the self-pity days...where would I be without them?
Today, along with a couple other days, have been self-pity days lately. Why? Because we sometimes just have to have them when living with this disease. There's no easy way around it. Other don't always understand. Fellow BD'ers do.
What have I been thinking about today? The days where I have to do something and I'm not feeling well enough and don't want to take my walker but have to. The days of walker use have been becoming more and more frequent. Sad but true. How does that make me feel as a 33 year old? Not too great. Mixed emotions. Angry. Sad. Frustrated. Disappointed. All of the above and more. Some days I think I'm getting use to it but then realize I am not. Some days I wonder if that will ever happen? What's the hardest about it? Dealing with the people who's mothers never taught them not to stare at people. Yep, they are out there. Some days there are very many of them. Other days, it's not a problem. Some days I feel like attaching a note on my walker in very small writing that says something along the lines of "Come a little closer so you can get a better look with the words fuck you written in small letter." For those of you who know me, you know this very well may happen some day:) Some days I wonder if they are staring at my gorgeous body, ha ha;) Now you are asking why do I need the walker? For two main reasons: I need the support (a cane will not support me enough) and fatigue (for when I need to sit down and there is no where to sit). Some days when we have to go shopping, the cart is enough for me. We always have my walker in Sue's trunk now for me (and if you're thinking of coming over and stealing it, well...you go right ahead:))
The other self-pity: the mouth ulcers. Oh how I hate these bastards some days. I've been getting them on my tongue lately. However this week my little buddies have planted themselves right under my front teeth on the gum. These ones hurt more than the tongue and like a bastard as I have properly named them. Not too mention the inflammation of the blood vessels in my mouth currently. Oh and let's not forget the lesions on my chest. Thank god tank top season is over.
What else can I possibly complain about? Wouldn't you like to know...the usual pain has been worse. I only have myself to blame for that one since I had two family get-togethers this past weekend. Could I have got out of them? Not a chance on one and highly unlikely for the other. Some things you cannot miss, like my mother-in-laws 50th birthday, which Jason and I paid for. Even though this and the other event were 2 hours long (give or take) and I was able to sit at both. However, they sucked any life left right out of me. Since then? I've been in bed.
The worse part of this weekend coming up? We are suppose to be going to the Renaissance Festival. Of course this all depends on how I feel. Currently it isn't happening but there's hope of me recovering to normal feeling like crap (Kala, that's for you, ha ha:))You know what's bad? When we decide, and I mean me, to bring Jason's nephew, Ryder, who is in a stroller so I can hold on to the stroller for support instead of having to bring the walker. Some days it's easier to explain a stroller than it is a walker. It's just the way it is some days. You may think I'm being over sensitive to what others think but some days I just get sick of having to explain and get sick of people staring. There's hope some day I will get use to it. Or better yet, hope of never having to use it again someday. Or people actually listening to their mothers when they tell them not to stare at others. And btw, it has gotten a little easier than the first time I used it.
The lovely dizziness made a small come back last night. Damn BPPV. I was smart this time and did the Epley maneuver immediately and it wasn't as bad. In two weeks I see my neuro so I will be discussing it with her.
I'm going to stop the self pity for tonight. Hope you all enjoyed the party. Now you can't ever say I didn't invite you to anything:)
“We may encounter many defeats but we must not be defeated.”~ Maya Angelou
Thursday, September 13, 2012
Problems with Pain Clinics...and Not Having Health Insurance
This post is about the problems with pain clinics and health care. I feel the need to share my story about my experience with my first pain clinic I went to back in 2007 so you can understand why I was afraid to go to another pain clinic.
It was a dark dreary day on May 7, 2007... ha ha, joking! Seriously though...Let's start with why I went there to begin with. I had a lapraoscopy back in November 2005 for what I learned after surgery was a pelvic adhesion and endometriosis. The back of my uterus is attached to my small intestine to be specific. Sounds like fun, right? Well it's not even close to fun when it's painful. During the surgery they cut the adhesion and in my follow up visit the doctor told me it may come back 10 years down the road or it may not. Guess who made a come back July 30th, 2007? Wonder how I can recall that date? The pain was so sudden and so severe I thought it was my appendix about to burst. My appendix? Yea, that's the location of the adhesion, so I'm probably going to be really screwed if I ever have problems with my appendix as I won't be able to tell if the pain is from the appendix or adhesion.
So I decided to go to a pain clinic on my own free will. I thought perhaps they would be able to do something for me. I made an appointment to MAPS in Coon Rapids, MN. I initially requested a female providers. I feel more comfortable with female providers. They understand female health issues and it's been proven they listen to female patients better than male providers do. The first available appointment for the female doctor was 3 months out. I decided to suck it up and make an appointment with a male doctor. I check in and the front desk says "You know your appointment today is with a male doctor, right?" I'm like yea, I made the appointment. Duh. The nurse brings me back and says "Your seeing a male doctor today." At this point I realize they made a note on my chart that I requested a female doctor. Why would they do this? I'm not sure. When the doctor comes in the room he doesn't say hi, hello, nice to meet you. His first words to me are "I can't exactly get a sex change, can I? I don't think my wife would like that." Even after that, I still didn't get a hi, hello, etc. I was flabbergasted. I was speechless (that doesn't happen often for those who know me). Needless to say the rest of the visit went downhill from there. I left there feeling like the lowest piece of shit, like a drug seeker, like I wasn't good enough to be treated with respect. I went to my car and cried. I kept thinking why would anyone want to go to this clinic? Why should anyone be treated this way? I never went back. I also decided at that moment when I got my nursing license I would NEVER treat a patient that way. That doctors name by the way? Dr. Thomas Cohn.
Think I'm being mean, rude, etc? Then may you have an experience like mine. Walk a mile in someone's shoes...
Since this Behcet's thing doesn't appear to be going away anytime soon, it was off to another pain clinic- United Pain Clinic. I tried my best to keep an open mind and not lump this pain clinic into the category of the other one, a.k.a. shitty pain clinic. Now, if I had written this on Tuesday, I'd have nothing but nice things to say. I brought my mother-in-law, Sue, with to the appointment for three reasons. 1) for support 2) to help me remember what they say 3) to have a witness in fear of them trying to pull some shit. I saw Dr. Sena Kihtir. The visit went well, she even knew what Behcet's was as she is from Turkey. She hasn't treated anyone for Behcet's since she lived in Turkey, but it was nice not having to explain what Behcet's is. The treatments we are going to do are Botox injections for my headaches, aqua therapy, biofeedback therapy, and adding Lyrica and Piroxicam to my meds. She asked me if she was going to be managing my meds or if my PCP was. I said I didn't know as we didn't talk about it. The next day I sent a message to my PCP and since I'm getting into meds she is not familiar with, she'd prefer they manage it, so she forwarded it on to Dr. Kihtir. I get a call about 3 PM yesterday, who I thought was the nurse but now realized it was Dr. Kihtir, stating I have to do a drug test and bring in my medications to her before she will prescribe them. Here's the problem with this. I do not have insurance and it would cost me $500 dollars to have this drug test done. Yes,$500! Now, I don't know about you but how many of you can afford this? Especially when you are out on disability. Trying to make ends meet when you're on disability is NOT easy. I said to her "I cannot afford $500 right now." Her response: "That doesn't matter. In order for me to prescribe them, you need to do a drug test." Guess what, it matters to me! She said she was going to send a message back to my PCP and I said "So am I." So I'm going to back track to Tuesday to tell you more specifics of my office visit with Dr. Kihtir. While I was being roomed by the CMA, I told her I cannot afford to pay the $500 but will be more than willing to do the test once I can get MN Care (hopefully November 1st). Why November 1st? In order to qualify you have to be without insurance for 4 months. Think we don't need health care reform? May you be placed in my position right now and see how well you manage with a chronic illness that requires anywhere from 3-15 visits a month to doctors. OK, I'm getting away from the visit. The CMA made it sound like it wouldn't be a problem. She even had me sign a narc contract. What is the point of the contract if they aren't prescribing me meds right? I can't think of a reason. As of yesterday it's not in my chart, but I have my copy at home. Then let's discuss the fact that Dr. Kihtir said I need to bring my medications down for her to see. I offered for her to see them at the visit Tuesday and she didn't seem interested at all. In fact, she didn't even respond when I offered them for her to see. And yes, she heard me because Sue heard me across the room. I am happy I had my mother-in-law with as she can back up my story about how things happened. In fact, her words to me yesterday were "I was under the impression it wasn't a big deal and you could do the test when you have insurance. They made it sound like it was no big deal." Thankfully my PCP is continuing my meds until I can get insurance.
So what next? Well I'm not one to stay quiet about things. Especially when it comes to the company I work for. Since I have had this experience, I have decided to write one of the higher ups in the company hoping he can help me and others who are in my position. What's my position? Backed into a corner until I can get insurance through the state. I have Allina Partners Care, however, they do not cover this drug test. I was going to go to Allina's Penny George Institute, which is an alternative healing place, but they do not take the Allina Partners Care. With the big stink about narcotics now-a-days (and yes I understand why), you think they would want people to go to any place they might benefit from to cut down on narcotic use. I am very disappointed that Allina Partners Care doesn't cover these options. What about the people who do not have a PCP who cares about their patients? And yes, they are out there.
Have I mentioned that stress triggers flare ups in BD? How many people get stressed over these types of problems? Many of us do. Unfortunately we get backed into a corner more often than you realize. What am I hoping will happen with the letter I'm writing? I'm hoping to help patients down the road. I don't think the policy will change anytime soon as everything has to go through numerous people/committees before a final approval will even happen. I hope this inspires more people to write their clinics about what needs to change. If nobody talks about it, how do we expect things to change? My motto is: If you are going to bitch about it, do something about it.
The quote below is one of my favorite quotes ever. You want the world to change, step up. You want people to change, step up.
"Be the change you want to see in the world." ~Mahatma Gandhi
It was a dark dreary day on May 7, 2007... ha ha, joking! Seriously though...Let's start with why I went there to begin with. I had a lapraoscopy back in November 2005 for what I learned after surgery was a pelvic adhesion and endometriosis. The back of my uterus is attached to my small intestine to be specific. Sounds like fun, right? Well it's not even close to fun when it's painful. During the surgery they cut the adhesion and in my follow up visit the doctor told me it may come back 10 years down the road or it may not. Guess who made a come back July 30th, 2007? Wonder how I can recall that date? The pain was so sudden and so severe I thought it was my appendix about to burst. My appendix? Yea, that's the location of the adhesion, so I'm probably going to be really screwed if I ever have problems with my appendix as I won't be able to tell if the pain is from the appendix or adhesion.
So I decided to go to a pain clinic on my own free will. I thought perhaps they would be able to do something for me. I made an appointment to MAPS in Coon Rapids, MN. I initially requested a female providers. I feel more comfortable with female providers. They understand female health issues and it's been proven they listen to female patients better than male providers do. The first available appointment for the female doctor was 3 months out. I decided to suck it up and make an appointment with a male doctor. I check in and the front desk says "You know your appointment today is with a male doctor, right?" I'm like yea, I made the appointment. Duh. The nurse brings me back and says "Your seeing a male doctor today." At this point I realize they made a note on my chart that I requested a female doctor. Why would they do this? I'm not sure. When the doctor comes in the room he doesn't say hi, hello, nice to meet you. His first words to me are "I can't exactly get a sex change, can I? I don't think my wife would like that." Even after that, I still didn't get a hi, hello, etc. I was flabbergasted. I was speechless (that doesn't happen often for those who know me). Needless to say the rest of the visit went downhill from there. I left there feeling like the lowest piece of shit, like a drug seeker, like I wasn't good enough to be treated with respect. I went to my car and cried. I kept thinking why would anyone want to go to this clinic? Why should anyone be treated this way? I never went back. I also decided at that moment when I got my nursing license I would NEVER treat a patient that way. That doctors name by the way? Dr. Thomas Cohn.
Think I'm being mean, rude, etc? Then may you have an experience like mine. Walk a mile in someone's shoes...
Since this Behcet's thing doesn't appear to be going away anytime soon, it was off to another pain clinic- United Pain Clinic. I tried my best to keep an open mind and not lump this pain clinic into the category of the other one, a.k.a. shitty pain clinic. Now, if I had written this on Tuesday, I'd have nothing but nice things to say. I brought my mother-in-law, Sue, with to the appointment for three reasons. 1) for support 2) to help me remember what they say 3) to have a witness in fear of them trying to pull some shit. I saw Dr. Sena Kihtir. The visit went well, she even knew what Behcet's was as she is from Turkey. She hasn't treated anyone for Behcet's since she lived in Turkey, but it was nice not having to explain what Behcet's is. The treatments we are going to do are Botox injections for my headaches, aqua therapy, biofeedback therapy, and adding Lyrica and Piroxicam to my meds. She asked me if she was going to be managing my meds or if my PCP was. I said I didn't know as we didn't talk about it. The next day I sent a message to my PCP and since I'm getting into meds she is not familiar with, she'd prefer they manage it, so she forwarded it on to Dr. Kihtir. I get a call about 3 PM yesterday, who I thought was the nurse but now realized it was Dr. Kihtir, stating I have to do a drug test and bring in my medications to her before she will prescribe them. Here's the problem with this. I do not have insurance and it would cost me $500 dollars to have this drug test done. Yes,$500! Now, I don't know about you but how many of you can afford this? Especially when you are out on disability. Trying to make ends meet when you're on disability is NOT easy. I said to her "I cannot afford $500 right now." Her response: "That doesn't matter. In order for me to prescribe them, you need to do a drug test." Guess what, it matters to me! She said she was going to send a message back to my PCP and I said "So am I." So I'm going to back track to Tuesday to tell you more specifics of my office visit with Dr. Kihtir. While I was being roomed by the CMA, I told her I cannot afford to pay the $500 but will be more than willing to do the test once I can get MN Care (hopefully November 1st). Why November 1st? In order to qualify you have to be without insurance for 4 months. Think we don't need health care reform? May you be placed in my position right now and see how well you manage with a chronic illness that requires anywhere from 3-15 visits a month to doctors. OK, I'm getting away from the visit. The CMA made it sound like it wouldn't be a problem. She even had me sign a narc contract. What is the point of the contract if they aren't prescribing me meds right? I can't think of a reason. As of yesterday it's not in my chart, but I have my copy at home. Then let's discuss the fact that Dr. Kihtir said I need to bring my medications down for her to see. I offered for her to see them at the visit Tuesday and she didn't seem interested at all. In fact, she didn't even respond when I offered them for her to see. And yes, she heard me because Sue heard me across the room. I am happy I had my mother-in-law with as she can back up my story about how things happened. In fact, her words to me yesterday were "I was under the impression it wasn't a big deal and you could do the test when you have insurance. They made it sound like it was no big deal." Thankfully my PCP is continuing my meds until I can get insurance.
So what next? Well I'm not one to stay quiet about things. Especially when it comes to the company I work for. Since I have had this experience, I have decided to write one of the higher ups in the company hoping he can help me and others who are in my position. What's my position? Backed into a corner until I can get insurance through the state. I have Allina Partners Care, however, they do not cover this drug test. I was going to go to Allina's Penny George Institute, which is an alternative healing place, but they do not take the Allina Partners Care. With the big stink about narcotics now-a-days (and yes I understand why), you think they would want people to go to any place they might benefit from to cut down on narcotic use. I am very disappointed that Allina Partners Care doesn't cover these options. What about the people who do not have a PCP who cares about their patients? And yes, they are out there.
Have I mentioned that stress triggers flare ups in BD? How many people get stressed over these types of problems? Many of us do. Unfortunately we get backed into a corner more often than you realize. What am I hoping will happen with the letter I'm writing? I'm hoping to help patients down the road. I don't think the policy will change anytime soon as everything has to go through numerous people/committees before a final approval will even happen. I hope this inspires more people to write their clinics about what needs to change. If nobody talks about it, how do we expect things to change? My motto is: If you are going to bitch about it, do something about it.
The quote below is one of my favorite quotes ever. You want the world to change, step up. You want people to change, step up.
"Be the change you want to see in the world." ~Mahatma Gandhi
Friday, September 7, 2012
Updates, Updates, and More Updates...
Where have I been this past month you ask? Well if you must know, mainly in bed. Why? Glad you asked because I have a lot to share.
Let's start with my first Remicade infusion. I'll start with the good news about it-I didn't keel over during it or end up in the ER. Awesome, right? Maybe...unfortunately since then I've been very bad off. Not sure if it threw me into a flare up or if I had a reaction that only happens to 1-8% of people who use the medication. That reaction is pain in the joints. I tend to have the reactions to medications that are in the small percent of people having it. Lucky me. Since the infusion I've had horrible knee and elbow pain, the worst I can recall having ever. No joke. Not to mention my fatigue has been sky high. I will be talking with my doctor next week to see what her thoughts are before I proceed with my next infusion. I feel the need to tell you about my time during the infusion because I don't often feel like killing people or telling them to shut the hell up but during my infusion I was not having a good day due to a major occipital headache. About a half hour in (it's a two hour infusion for those of you who do not know) a lady comes in for her infusion. She is happily talking with the nurse and telling the nurse how great she feels and how since she started her infusion she can exercise again. Then she felt the need to comment on her low BP and mine was high that day due to the headache. She got to take her cuff off while I had to keep mine on the entire time. Unfortunately she continued on and on about how great life was and I wanted to puke. In fact, I thought about doing it so either she or I left the room. I was seconds away from telling her to shut it because when you say how great your life is over and over, it only means one thing- that it isn't. All I can say is thank god her infusion was only about 30 minutes because I would've had to ask to be moved. Then I would look like an ass. Maybe you think I'm being an ass. The reason I tell this story is so you can understand what it's like when you feel like complete shit from the Behcet's and you deal with a situation like this where you are trapped and want to scream but can't because then you look like the ass. I have had this happen at home- when I have a headache or feel like crap- I've had to lock myself in my room so I don't snap at my family. There are many others who deal with this as well. Sometimes we have this for days in a row, such as in a flare up. Other times it's just for a day here and there. My point being, we have chronic pain and can't always be chipper. So if you happen to catch us on a bad day, cut us some slack.
Next up is my cystoscopy. This procedure is suppose to be an easy thing. For me, it wasn't. The doctor was very nice who performed it, thankfully. He explained well and I was able to watch on the TV. For those of you who don't know what a cystoscopy is, they take a catheter that has a camera on the end and put it up into your bladder. Your bladder fills with a saline to expand it so they can see everything better. They are looking for abnormalities. The catheter itself was fine. It was the filling of my bladder that killed. You have to hold it in until they are done, which takes no longer than a minute or two. My body does not tolerate any kind of invasive procedure well. Short history here for you. I once had an IUD placed and ended up in the ER less than an hour later needing it to be removed due to pain. I almost passed out as it was so painful. No joke. I once had a lapraoscopy in November 2005 and didn't fully recover until February 2006. Yep, not joking again. I was very sick for those couple months. My bladder was not happy with the cystoscopy. On the way home we had to stop at bathrooms every 5 minutes due to pain and feeling like I need to urinate, which I really didn't. Maybe a dribble came out if I was lucky. Poor Sue, thankfully she was a trooper driving me. I told her what I wouldn't give to just be wearing a depends on the ride home! yea, I'm serious. Then the fun part of getting home is having blood either in your urine or on the toilet paper for the next day. I actually had to pull out my heat pad to help with the bladder pain. It was that bad. I hear from others it is not like this for most people. Apparently I'm just one of the lucky ones again. It took me 3 days before I felt normal again. The worst part was needing to have the urodynamic testing done the following week which is similar to the cystoscopy- NO!!!!!!!!!!!!!
So I was dreading the urodynamic testing but can you blame me? However, I needed to do it to find out what the problem is. This test was very interesting. You may or may not want to stop reading here. I go into details- you've been warned. First, you will be showing your bottom half to the nurses and provider so beware for those of you who are shy. You get hooked up to EMG stickers hooked up to your rectal area to monitor your muscles since they are involved with your urine. Then you get a catheter in your rectum and bladder. Don't worry, those aren't painful as long as they use enough jelly. You also have two tubes hooked up to your legs which are the tubes to fill your bladder with saline. You start by urinating your full bladder into a commode which has a beaker beneath it on the floor and that is hooked up to some cords that measure your amount, stream, and stuff like that. Then they have the provider come in and they start the infusion of saline into your bladder. I did not make through more than the first test for this as it was too painful. From what I gathered it sounds like they start with a small amount, then infuse more until they reach a specific number. During this they ask for you to tell them when you have the sensation to urinate- when would you look for a bathroom, when would you be running someone down to get to the bathroom and things like that. I started getting pain so we ended it there. In fact, it was painful enough to bring tears to my eyes. Then you urinate the remaining amount in the commode again. I met with the provider, Jill Freeman, afterwards to discuss results. We found out I have a very small bladder, which I already knew. I can hold about 4 shot glasses worth before I need to go. Regarding the pain, that is not normal. She said she's had two people who've had problems like that before-one who had a pelvic floor dysfunction and one they were unable to explain why she has the pain. So I'm unique once again. Yay for me! Other than that, I didn't have problems starting a stream that day, which it doesn't happen every day- only off and on every couple months. Because I could only urinate smaller amounts they were not able to assess my flow like they normally would. Where does that leave me then? We are going to try a medication called Oxybutynin to see if that relieves the frequency. If it doesn't, then she will diagnose me with interstitial cystitis. I can't recall why she treats people this way, BD brain today, but it made sense when she was explaining it. So that's where I'm at with the urinary things. I don't want to think bad but have a feeling I will be diagnosed with interstitial cystitis. Guess we'll see what happens;)
I've unfortunately had to change to a different pain med, Oxycontin, due to my pain being the worst it's ever been and no signs of letting up. I hate taking medications so I'll just stop there because I think I've complained enough on here tonight.
I've been dealing with a lovely thing called BPPV, or benign paroxysmal positional vertigo. Say that 10 times fast, I dare ya:) I've had it happen twice since August 24th. Waiting to hear from my neuro if she can treat it or if I need to see ENT. I would never wish this on anyone, not even the annoying lady at my Remicade infusion! It's a horrible spinning sensation when moving or laying down. Laying down is the worst. I have to sit up in attempt to tolerate it. It affects my eyes as well. I get nauseated and ear pain. Look it up if you don't know what it is, it's pretty interesting. The Epley maneuver really helped me thankfully. BTW, do you know how difficult it is to try to read how to do the Epley maneuver when you have nystagmus? Very. The next day after is pure hell- temporal headaches on both sides, numbness/tingling in face, and a general feeling like shit. Almost like you have the flu but don't. I will be happy when I never get this again.
What else has been going on? That's about it. I have my pain clinic appointment next week. I'm sure I'll have plenty to say after that. Hopefully it will go good. I'm crossing my fingers. Hope everyone is well! Good night!
I love the quote below. It cracks me up every time. Haven't decided which of the two I fall under:)
"Those who can laugh without cause have either found the true meaning of happiness or have gone stark raving mad."~Norm Papernick
Let's start with my first Remicade infusion. I'll start with the good news about it-I didn't keel over during it or end up in the ER. Awesome, right? Maybe...unfortunately since then I've been very bad off. Not sure if it threw me into a flare up or if I had a reaction that only happens to 1-8% of people who use the medication. That reaction is pain in the joints. I tend to have the reactions to medications that are in the small percent of people having it. Lucky me. Since the infusion I've had horrible knee and elbow pain, the worst I can recall having ever. No joke. Not to mention my fatigue has been sky high. I will be talking with my doctor next week to see what her thoughts are before I proceed with my next infusion. I feel the need to tell you about my time during the infusion because I don't often feel like killing people or telling them to shut the hell up but during my infusion I was not having a good day due to a major occipital headache. About a half hour in (it's a two hour infusion for those of you who do not know) a lady comes in for her infusion. She is happily talking with the nurse and telling the nurse how great she feels and how since she started her infusion she can exercise again. Then she felt the need to comment on her low BP and mine was high that day due to the headache. She got to take her cuff off while I had to keep mine on the entire time. Unfortunately she continued on and on about how great life was and I wanted to puke. In fact, I thought about doing it so either she or I left the room. I was seconds away from telling her to shut it because when you say how great your life is over and over, it only means one thing- that it isn't. All I can say is thank god her infusion was only about 30 minutes because I would've had to ask to be moved. Then I would look like an ass. Maybe you think I'm being an ass. The reason I tell this story is so you can understand what it's like when you feel like complete shit from the Behcet's and you deal with a situation like this where you are trapped and want to scream but can't because then you look like the ass. I have had this happen at home- when I have a headache or feel like crap- I've had to lock myself in my room so I don't snap at my family. There are many others who deal with this as well. Sometimes we have this for days in a row, such as in a flare up. Other times it's just for a day here and there. My point being, we have chronic pain and can't always be chipper. So if you happen to catch us on a bad day, cut us some slack.
Next up is my cystoscopy. This procedure is suppose to be an easy thing. For me, it wasn't. The doctor was very nice who performed it, thankfully. He explained well and I was able to watch on the TV. For those of you who don't know what a cystoscopy is, they take a catheter that has a camera on the end and put it up into your bladder. Your bladder fills with a saline to expand it so they can see everything better. They are looking for abnormalities. The catheter itself was fine. It was the filling of my bladder that killed. You have to hold it in until they are done, which takes no longer than a minute or two. My body does not tolerate any kind of invasive procedure well. Short history here for you. I once had an IUD placed and ended up in the ER less than an hour later needing it to be removed due to pain. I almost passed out as it was so painful. No joke. I once had a lapraoscopy in November 2005 and didn't fully recover until February 2006. Yep, not joking again. I was very sick for those couple months. My bladder was not happy with the cystoscopy. On the way home we had to stop at bathrooms every 5 minutes due to pain and feeling like I need to urinate, which I really didn't. Maybe a dribble came out if I was lucky. Poor Sue, thankfully she was a trooper driving me. I told her what I wouldn't give to just be wearing a depends on the ride home! yea, I'm serious. Then the fun part of getting home is having blood either in your urine or on the toilet paper for the next day. I actually had to pull out my heat pad to help with the bladder pain. It was that bad. I hear from others it is not like this for most people. Apparently I'm just one of the lucky ones again. It took me 3 days before I felt normal again. The worst part was needing to have the urodynamic testing done the following week which is similar to the cystoscopy- NO!!!!!!!!!!!!!
So I was dreading the urodynamic testing but can you blame me? However, I needed to do it to find out what the problem is. This test was very interesting. You may or may not want to stop reading here. I go into details- you've been warned. First, you will be showing your bottom half to the nurses and provider so beware for those of you who are shy. You get hooked up to EMG stickers hooked up to your rectal area to monitor your muscles since they are involved with your urine. Then you get a catheter in your rectum and bladder. Don't worry, those aren't painful as long as they use enough jelly. You also have two tubes hooked up to your legs which are the tubes to fill your bladder with saline. You start by urinating your full bladder into a commode which has a beaker beneath it on the floor and that is hooked up to some cords that measure your amount, stream, and stuff like that. Then they have the provider come in and they start the infusion of saline into your bladder. I did not make through more than the first test for this as it was too painful. From what I gathered it sounds like they start with a small amount, then infuse more until they reach a specific number. During this they ask for you to tell them when you have the sensation to urinate- when would you look for a bathroom, when would you be running someone down to get to the bathroom and things like that. I started getting pain so we ended it there. In fact, it was painful enough to bring tears to my eyes. Then you urinate the remaining amount in the commode again. I met with the provider, Jill Freeman, afterwards to discuss results. We found out I have a very small bladder, which I already knew. I can hold about 4 shot glasses worth before I need to go. Regarding the pain, that is not normal. She said she's had two people who've had problems like that before-one who had a pelvic floor dysfunction and one they were unable to explain why she has the pain. So I'm unique once again. Yay for me! Other than that, I didn't have problems starting a stream that day, which it doesn't happen every day- only off and on every couple months. Because I could only urinate smaller amounts they were not able to assess my flow like they normally would. Where does that leave me then? We are going to try a medication called Oxybutynin to see if that relieves the frequency. If it doesn't, then she will diagnose me with interstitial cystitis. I can't recall why she treats people this way, BD brain today, but it made sense when she was explaining it. So that's where I'm at with the urinary things. I don't want to think bad but have a feeling I will be diagnosed with interstitial cystitis. Guess we'll see what happens;)
I've unfortunately had to change to a different pain med, Oxycontin, due to my pain being the worst it's ever been and no signs of letting up. I hate taking medications so I'll just stop there because I think I've complained enough on here tonight.
I've been dealing with a lovely thing called BPPV, or benign paroxysmal positional vertigo. Say that 10 times fast, I dare ya:) I've had it happen twice since August 24th. Waiting to hear from my neuro if she can treat it or if I need to see ENT. I would never wish this on anyone, not even the annoying lady at my Remicade infusion! It's a horrible spinning sensation when moving or laying down. Laying down is the worst. I have to sit up in attempt to tolerate it. It affects my eyes as well. I get nauseated and ear pain. Look it up if you don't know what it is, it's pretty interesting. The Epley maneuver really helped me thankfully. BTW, do you know how difficult it is to try to read how to do the Epley maneuver when you have nystagmus? Very. The next day after is pure hell- temporal headaches on both sides, numbness/tingling in face, and a general feeling like shit. Almost like you have the flu but don't. I will be happy when I never get this again.
What else has been going on? That's about it. I have my pain clinic appointment next week. I'm sure I'll have plenty to say after that. Hopefully it will go good. I'm crossing my fingers. Hope everyone is well! Good night!
I love the quote below. It cracks me up every time. Haven't decided which of the two I fall under:)
"Those who can laugh without cause have either found the true meaning of happiness or have gone stark raving mad."~Norm Papernick
Wednesday, August 8, 2012
Every Nurses Favorite Subject...
Spoiler Alert: This post contains every nurses favorite subject- bodily fluids! This post also contains TMI. You've been warned...
I finally went to the urologist Monday. I was suppose to go in February 2011 for blood in my urine but then got sick with the Behcet's. I finally decided to go as I've been having more problems that are of concern to me. The blood in the urine wasn't much of a concern as there are many reasons someone could have blood in the urine- kidney stone, exercising, menstrual cycle, sex, etc... (This is not medical advice, if you have blood in your urine- consult your doctor- in fact, my whole blog is not meant for medical advice, consult your doctor. There you go sue happy people out there:))
What problems have I've been having lately? Well there's the frequency, which has gotten worse over the past couple years. I go to the bathroom at night a minimum of five times each night, but usually more. I go to the bathroom at least once every hour during the day. There has been times where I've taken a nap and had to micturate every 10 minutes for an hour or so. No joke. Yes, I drink a lot of water but you think it wouldn't be so bad. And yes, I've tried the no caffeine route and other various things without success (FYI). Then there's the unable to control my stream at times- I can sit on the toilet anywhere from 10 seconds to minutes without being able to micturate. Does this happen all the time? No, it tends to go in spurts. It's very frustrating when it happens. Even if I try to push, nothing...I think that about sums up the symptoms. Had enough of my bathroom habits yet? I sure have.
I was referred to a nurse practitioner, Jill Freeman, out of Allina Clinic Midwest Surgery. She was awesome. Very nice, listened, explained things well- everything you want in a provider. She wants to do a full workup on me. The blood in the urine isn't of much concern, it's the fact that I have had RBC's (red blood cells) in my urine before she says is the concern and given my symptoms. I had to do the lovely pee in a cup- checking a UA/UC (urine analysis/urine culture) and checking for cancer cells. All were negative this time around-yippee! After making it into the cup, which is awesome fun for us girls since we don't have a penis that we can whip out and aim right into the cup, the nurse did a bladder scan which checks for how much urine you retain after emptying your bladder. I had 175 mL's. This means I'm retaining urine. Per the nurse, you want under 150 mL's. So why am I retaining urine? Good question. This is why I'm getting a full work up.
I have two other tests coming up towards the end of the month. The first is a cystoscopy. This is done in office and apparently only takes 10 minutes. They are looking for structural problems per Jill (unless I heard wrong which is possible because the entire day I as fighting a occipital headache). The following week I will be having urodynamic testing which sounds like way too much fun after reading the brochure I was given. This is also done in office and takes about an hour, sometimes more. This test apparently tracks how I go to the bathroom-the specifics. I will be hooked up to a catheter and other various items. Fun times...I also had an ultrasound of the kidneys and bladder later that day. Thankfully those have come back normal. This is what's on my schedule for the next couple weeks, along with remicade infusions. I was to have the infusions this week but decided against it since we are going on vacation and I do not want to feel icky on vacation. Given my track record with new meds, there is no doubt in my mind I would either have a reaction and/or feel like shit for the next five days. In fact, I can't remember a time ever where this didn't happen with a BD medication.
As for my vitamin D and vitamin B level, I've learned something new. With active BD, you can have low vitamin D levels. Guess what? That would be me. It shocks me as I've been out in the sun a lot this year and have a tan, so why on earth would I have low vitamin D?! I'd like to thank Leslie for finding the article about the link between the two:) For the record, my level was at 27.4. My vitamin B12 level was on the low end of normal at 286. Dr. Achenbach wants mine over 300. She wants me to do weekly B12 injections for a month, then once a month after that. There's hope that this will take care of some of the weird neuro symptoms I've been having, like the numbness/tingling on various parts of my body. Maybe I won't be so fatigued too. Not holding my breathe on either of these though. Nothing with BD is ever that simple.
My final topic is about the spot on my leg. This spot I've had since before Christmas last year. I finally went in to get it biopsied today. I saw Dr. Pappas out of Allina Cambridge. He was nice as well. The good news is he doesn't think it's related to the BD. I can't for the life of me remember what he said it was- all those derm names are so funky anyways. I'll just have to wait for results. I think I'm finally done with this post. I feel like it's way too much info and that I've been typing forever. I'm very tired today and can't wait to read this tomorrow to see how many errors I have in it. This is the bad part of being anal about things, coming back and finding you have many errors. Anyways, good night folks!
I decided to end this post with a joke instead of a quote:
You know you are a nurse when you think it is funny to drink apple juice out of a urine cup.
I finally went to the urologist Monday. I was suppose to go in February 2011 for blood in my urine but then got sick with the Behcet's. I finally decided to go as I've been having more problems that are of concern to me. The blood in the urine wasn't much of a concern as there are many reasons someone could have blood in the urine- kidney stone, exercising, menstrual cycle, sex, etc... (This is not medical advice, if you have blood in your urine- consult your doctor- in fact, my whole blog is not meant for medical advice, consult your doctor. There you go sue happy people out there:))
What problems have I've been having lately? Well there's the frequency, which has gotten worse over the past couple years. I go to the bathroom at night a minimum of five times each night, but usually more. I go to the bathroom at least once every hour during the day. There has been times where I've taken a nap and had to micturate every 10 minutes for an hour or so. No joke. Yes, I drink a lot of water but you think it wouldn't be so bad. And yes, I've tried the no caffeine route and other various things without success (FYI). Then there's the unable to control my stream at times- I can sit on the toilet anywhere from 10 seconds to minutes without being able to micturate. Does this happen all the time? No, it tends to go in spurts. It's very frustrating when it happens. Even if I try to push, nothing...I think that about sums up the symptoms. Had enough of my bathroom habits yet? I sure have.
I was referred to a nurse practitioner, Jill Freeman, out of Allina Clinic Midwest Surgery. She was awesome. Very nice, listened, explained things well- everything you want in a provider. She wants to do a full workup on me. The blood in the urine isn't of much concern, it's the fact that I have had RBC's (red blood cells) in my urine before she says is the concern and given my symptoms. I had to do the lovely pee in a cup- checking a UA/UC (urine analysis/urine culture) and checking for cancer cells. All were negative this time around-yippee! After making it into the cup, which is awesome fun for us girls since we don't have a penis that we can whip out and aim right into the cup, the nurse did a bladder scan which checks for how much urine you retain after emptying your bladder. I had 175 mL's. This means I'm retaining urine. Per the nurse, you want under 150 mL's. So why am I retaining urine? Good question. This is why I'm getting a full work up.
I have two other tests coming up towards the end of the month. The first is a cystoscopy. This is done in office and apparently only takes 10 minutes. They are looking for structural problems per Jill (unless I heard wrong which is possible because the entire day I as fighting a occipital headache). The following week I will be having urodynamic testing which sounds like way too much fun after reading the brochure I was given. This is also done in office and takes about an hour, sometimes more. This test apparently tracks how I go to the bathroom-the specifics. I will be hooked up to a catheter and other various items. Fun times...I also had an ultrasound of the kidneys and bladder later that day. Thankfully those have come back normal. This is what's on my schedule for the next couple weeks, along with remicade infusions. I was to have the infusions this week but decided against it since we are going on vacation and I do not want to feel icky on vacation. Given my track record with new meds, there is no doubt in my mind I would either have a reaction and/or feel like shit for the next five days. In fact, I can't remember a time ever where this didn't happen with a BD medication.
As for my vitamin D and vitamin B level, I've learned something new. With active BD, you can have low vitamin D levels. Guess what? That would be me. It shocks me as I've been out in the sun a lot this year and have a tan, so why on earth would I have low vitamin D?! I'd like to thank Leslie for finding the article about the link between the two:) For the record, my level was at 27.4. My vitamin B12 level was on the low end of normal at 286. Dr. Achenbach wants mine over 300. She wants me to do weekly B12 injections for a month, then once a month after that. There's hope that this will take care of some of the weird neuro symptoms I've been having, like the numbness/tingling on various parts of my body. Maybe I won't be so fatigued too. Not holding my breathe on either of these though. Nothing with BD is ever that simple.
My final topic is about the spot on my leg. This spot I've had since before Christmas last year. I finally went in to get it biopsied today. I saw Dr. Pappas out of Allina Cambridge. He was nice as well. The good news is he doesn't think it's related to the BD. I can't for the life of me remember what he said it was- all those derm names are so funky anyways. I'll just have to wait for results. I think I'm finally done with this post. I feel like it's way too much info and that I've been typing forever. I'm very tired today and can't wait to read this tomorrow to see how many errors I have in it. This is the bad part of being anal about things, coming back and finding you have many errors. Anyways, good night folks!
I decided to end this post with a joke instead of a quote:
You know you are a nurse when you think it is funny to drink apple juice out of a urine cup.
Wednesday, August 1, 2012
The Five Stages...
They say there are five stages in a loss. Denial, Anger, Bargaining, Depression, and Acceptance. What's the loss am I talking about? Has something happened? Have I lost the Behcet's Disease? Don't I wish...
The loss I'm talking about is a part of me. As the disease progresses, you lose a part of yourself. Even if your symptoms stay minimal, you still lose a small portion of yourself. The worse the disease is, the bigger the loss.
They say the stages are suppose to be in order. In order to pass on to the next, you must go through the previous. I disagree. I've already accepted I have Behcet's. I've been through the denial stage and man was that a blast. Trying to pretend the Behcet's isn't there. Haven't hit the depression stage but I'm sure I'll get there at some point. The bargaining stage, well... I haven't bargained since I would pray to the porcelain god while drinking many years ago:) Is there bargaining with Behcet's anyways? You can't bargain with Bechet's because Behcet's will win every time.
Guess what? I am currently in the angry stage. I'm just plain angry about this disease. It has robbed me of my old life. I'm angry part of me is gone. I'm angry because it's highly unlikely I will get it back due to the disease itself and my horrible intolerance to the medications used to treat it. Do you know most people are on multiple medications to manage the disease? How many am I on? Nothing right now but will be starting IV remicade this next week. There is a small ray of hope still left in me I will tolerate one of the three medications left I can try.
What is losing a part of yourself like to Behcet's? It's hard to explain. Even as I try to explain, only those with Behcet's will fully understand. For everyone it is different anyways. Some of us lose a small part, while others a large part. It's almost like becoming a teenager again- trying to find out who you are and trying to find out where you fit in society. I'm still me but I'm different. I can no longer work, no longer go-go-go, no longer able to clean the house from top to bottom in one day...the list goes on and on and you don't have all day to listen to me complain, right?
This post isn't meant to make you feel bad for me, but rather help you understand that even as adults we can still lose part of ourselves, still be trying to find out who you are, and what this horrible disease takes from us.
I would like everyone to take a moment of silence for those who lost their lives in the 35W bridge collapse today in 2007. (insert moment of silence here) :) Jason and I were on our way home from picking up a washer from one of my friends when it happened. We were a couple minutes away from the bridge at the time and watched the emergency crews fly by us. The reason I post this is 1) out of respect for those who lost their lives- it should have never happened- shame on you MN-DOT and all those involved 2) a reminder that no matter how shitty life can be at times, it could always be worse.
"The greatest loss is what dies inside us while we live.”~Norman Cousins
The loss I'm talking about is a part of me. As the disease progresses, you lose a part of yourself. Even if your symptoms stay minimal, you still lose a small portion of yourself. The worse the disease is, the bigger the loss.
They say the stages are suppose to be in order. In order to pass on to the next, you must go through the previous. I disagree. I've already accepted I have Behcet's. I've been through the denial stage and man was that a blast. Trying to pretend the Behcet's isn't there. Haven't hit the depression stage but I'm sure I'll get there at some point. The bargaining stage, well... I haven't bargained since I would pray to the porcelain god while drinking many years ago:) Is there bargaining with Behcet's anyways? You can't bargain with Bechet's because Behcet's will win every time.
Guess what? I am currently in the angry stage. I'm just plain angry about this disease. It has robbed me of my old life. I'm angry part of me is gone. I'm angry because it's highly unlikely I will get it back due to the disease itself and my horrible intolerance to the medications used to treat it. Do you know most people are on multiple medications to manage the disease? How many am I on? Nothing right now but will be starting IV remicade this next week. There is a small ray of hope still left in me I will tolerate one of the three medications left I can try.
What is losing a part of yourself like to Behcet's? It's hard to explain. Even as I try to explain, only those with Behcet's will fully understand. For everyone it is different anyways. Some of us lose a small part, while others a large part. It's almost like becoming a teenager again- trying to find out who you are and trying to find out where you fit in society. I'm still me but I'm different. I can no longer work, no longer go-go-go, no longer able to clean the house from top to bottom in one day...the list goes on and on and you don't have all day to listen to me complain, right?
This post isn't meant to make you feel bad for me, but rather help you understand that even as adults we can still lose part of ourselves, still be trying to find out who you are, and what this horrible disease takes from us.
I would like everyone to take a moment of silence for those who lost their lives in the 35W bridge collapse today in 2007. (insert moment of silence here) :) Jason and I were on our way home from picking up a washer from one of my friends when it happened. We were a couple minutes away from the bridge at the time and watched the emergency crews fly by us. The reason I post this is 1) out of respect for those who lost their lives- it should have never happened- shame on you MN-DOT and all those involved 2) a reminder that no matter how shitty life can be at times, it could always be worse.
"The greatest loss is what dies inside us while we live.”~Norman Cousins
Friday, July 27, 2012
My New Neurologist...
This one's gonna be a short entry.
Yesterday I made a visit to a new neurologist. Or new to me- Dr. Achenbach from Allina Cambridge. I was actually going to see her initially but then went to Noran instead since they were listed on the ABDA website.
I'm very happy with my visit yesterday. She actually knows about Behcet's. Really?! Yes, a doctor who knows about Behcet's! Why does she? Because she did a year of internal medicine before neurology and dealt with Behcet's patients at the hospital many times. So good news for me!
She wants me to go off the tramadol as it is known to cause seizures for people who have no risk/reason for developing them. She worded it much better than me of course:) FYI: If you have any neurological problems you should not be on tramadol or wellbutrin since they can cause seizures. There's your medical lesson for the day. She would like me to try butterbur for headaches once I know what's going on with my IV remicade. I am waiting to hear if Allina Partners Care covers in clinic IV remicade since I am without insurance. By the way, how are people suppose to get better without insurance? I'm stuck in a 4 month loop without insurance. Awesome times. Thankfully Allina has a thing called Allina Partners Care which you can see Allina providers and get your visits covered for free. I can't imagine what my bills would be like without this! Fucking ridiculous is what.
Butterbur is suppose to cut headaches by 50%, which would be frickin' awesome! I've been dealing with temporal and occipital headaches for as long as I can remember now. A side note: another medication I can cross off my list for not working is the Zonegran. She said she wouldn't try me on a prescription medication because my Behcet's isn't under control. What I wouldn't give to get the Behcet's under control... I don't even know what under control means anymore. The last time I felt normal was July 2011 when I was on the prednisone. Damn allergies...or damn my body for not tolerating medications... If I don't get on the remicade, then I will try the butterbur. If I get on the remicade then I will hold off on the butterbur.
She also wants me to try a gluten free diet to see if it helps with my inflammation. So I am now going to learn about that. Wish me luck! I know I'm gonna need it. I also need to keep a headache journal. We also rechecked vitamin D and vitamin B level since it's been a year. I think that about sums it up. Hopefully I recalled everything right. And I know this post is all over the place but too bad. Not feeling well enough to make it perfect.
Hope everyone has a wonderful weekend!
"Life is about increasing understanding by expanding our ability to experience new things. New realities, points of view other than the ones familiar to us."~Ken Dyers
As I was typing this up, I heard back from my rheumy's office. I am scheduled for my first Remicade infusion on August 7th, woot woot!
Yesterday I made a visit to a new neurologist. Or new to me- Dr. Achenbach from Allina Cambridge. I was actually going to see her initially but then went to Noran instead since they were listed on the ABDA website.
I'm very happy with my visit yesterday. She actually knows about Behcet's. Really?! Yes, a doctor who knows about Behcet's! Why does she? Because she did a year of internal medicine before neurology and dealt with Behcet's patients at the hospital many times. So good news for me!
She wants me to go off the tramadol as it is known to cause seizures for people who have no risk/reason for developing them. She worded it much better than me of course:) FYI: If you have any neurological problems you should not be on tramadol or wellbutrin since they can cause seizures. There's your medical lesson for the day. She would like me to try butterbur for headaches once I know what's going on with my IV remicade. I am waiting to hear if Allina Partners Care covers in clinic IV remicade since I am without insurance. By the way, how are people suppose to get better without insurance? I'm stuck in a 4 month loop without insurance. Awesome times. Thankfully Allina has a thing called Allina Partners Care which you can see Allina providers and get your visits covered for free. I can't imagine what my bills would be like without this! Fucking ridiculous is what.
Butterbur is suppose to cut headaches by 50%, which would be frickin' awesome! I've been dealing with temporal and occipital headaches for as long as I can remember now. A side note: another medication I can cross off my list for not working is the Zonegran. She said she wouldn't try me on a prescription medication because my Behcet's isn't under control. What I wouldn't give to get the Behcet's under control... I don't even know what under control means anymore. The last time I felt normal was July 2011 when I was on the prednisone. Damn allergies...or damn my body for not tolerating medications... If I don't get on the remicade, then I will try the butterbur. If I get on the remicade then I will hold off on the butterbur.
She also wants me to try a gluten free diet to see if it helps with my inflammation. So I am now going to learn about that. Wish me luck! I know I'm gonna need it. I also need to keep a headache journal. We also rechecked vitamin D and vitamin B level since it's been a year. I think that about sums it up. Hopefully I recalled everything right. And I know this post is all over the place but too bad. Not feeling well enough to make it perfect.
Hope everyone has a wonderful weekend!
"Life is about increasing understanding by expanding our ability to experience new things. New realities, points of view other than the ones familiar to us."~Ken Dyers
As I was typing this up, I heard back from my rheumy's office. I am scheduled for my first Remicade infusion on August 7th, woot woot!
Friday, July 20, 2012
My Ode To Behcet's...
My Ode to Behcet's
Oh Behcet's,
What would I do without you?
I'll tell you what:
Not have to deal with allergies to every medication,
Sleep a good nights sleep,
Not feel like I'm 300 years old,
Enjoy the warm weather instead of dreading it,
Enjoy gardening, walks, even working and cleaning the house!
Live life again...
What do I think of you?
Screw you Behcet's!
My Ode to Behcet's...
(Trust me I could go on for hours of what I'd do without it)
I decided to write this after yet another reaction to a new medication. Last night I finally tried Enbrel. Why did I wait so long to try it you ask? Simple. I haven't been feeling well. I try to wait until I'm feeling somewhat decent before starting a new medication in case I end up having to go the ER. Been there, done that and it's not fun.
So what happened with Enbrel right?
First you need to know Enbrel is an injection. The preferred site is your leg according to the info they sent me. And I've gotten way to much shit from the manufacturer of Enbrel. Way too much. I held the pen and Jason hit the button for me for it to inject. I made it less than 5 seconds. Probably more like 2 seconds. It was a burning pain nothing like I've felt before. The rest of the night I had a burning pain in my leg and nausea that woke me up every 30 minutes. This continued throughout the night, so sleep there was not. I woke up this morning and there is a scab where the injection was given. Needless to say I will be watching the area closely and I can add another medication to my growing list of allergies.
On a completely different note I am very upset about a letter my Behcet's friend received from the doctor. I'm upset for many reasons for this one and cannot say all I want to because I need to keep my friend anonymous. I feel it's important you read this and understand what we go through as someone with chronic pain. I've known druggies before and the person who received this letter is NOT a druggie. Here's the letter.
Dear ***,
I'm sorry to hear that *** had another bad episode of pain. I think we did have a protocol of sorts, it just isn't always sufficient to completely eliminate her/his pain- we talked about using ibuprofen vs. naproxen, and the other measures, but it just isn't enough sometimes. The difficulty is that we really can't do narcotics either- they may distract him/her from the pain since they can give her/him a kind of "high", but it's not appropriate therapy, and it will ultimately lead to him/her becoming dependant on them. In fact, I wonder if she/he is already dependant on them and that's part of the reason why his/her pain keeps coming back. If we wanted to further look at this possibility we could perhaps consider having her/him see an addiction specialist for an evaluation, to help us decide if some amount of narcotic dependence could be playing a role in his/her pain.
Another thought about this particular episode, since she/he has the blurry vision and the nausea is that it seems an awful lot like a migraine and we could try a triptan, such as sumatriptan. I know he's/she's tried it in the past without success, but as long as she's/he's not had a serious side effect from it, it might not hurt to try it again. I will go ahead and order some to the WM pharmacy if you decide you would like to pick it up and give it a try (it's a nasal spray- can use it twice in 24 hours, and should not use it for more than 4 days in a 30 day period).
Another thing we could consider adding to the protocol would be a therapist visit. Perhaps at times like this when she/he gets really bad, myself or Dr. Monroe could try to contact behavioral health about getting him/her seen that day by the behavioral health department so he/she could talk with a therapist about CBT pain management techniques and they can help her/him overcome her/his acute crisis (I mean- in addition to the regular CBT treatments we are setting up, I'm wondering if maybe we can use them as a resource to help with these acute attacks).
I'm sorry everything has been so frustrating, hopefully some of these ideas might help us out. Cheers-
Dr. Roberts
First, I'd like to let you know Dr. Roberts that not everyone gets a "high" as you call it from medications. Second, narcotics, if used as prescribed, the addiction risk is low. Why do I know this? Because I've discussed this with my doctor friends. Third, I hope that you require narcotics some day and they do not give them to you. Maybe you'll be blessed with this disease and can figure out how to manage without pain pills. Fourth, this doctor should be forced to go back to med school and be taught a compassion/caring class. And last, "cheers"? Really? There's nothing cheerful about this letter and maybe you are thinking drinking? Maybe your secret addiction? Perhaps...(think I'm being mean? Too bad, get off my blog)
Yes, this note upsets me because when I my adhesion come back in 2007 I went to MAPS pain clinic in Coon Rapids by my own choice and was treated like a drug addict because I used 30 vicodin every 2 months for my pelvic adhesion pain. (I will go more into it at a later date) So I do understand what it's like to be on the side of needing medications. I also understand the side of dealing with drug seekers- I saw it all too often at the clinics when I was working. I've also worked with doctors who refuse to give narcotics to anyone. I've also worked with doctors who will only give older people narcotics and frown upon the younger people who need it. So what's the solution? Good question. A magic button health care professionals can push that relieves all pain for patients so we don't need medications. Sounds good to me.
So what's my excuse for the monthly posting? It's summer and I've been on my anti-Internet kick. So there:)
"Never forget why you went into the medical profession because some day you may need someone to help take care of you." (Let's hope they went into the field to help others and not for the money, right?) ~Chrissy
Oh Behcet's,
What would I do without you?
I'll tell you what:
Not have to deal with allergies to every medication,
Sleep a good nights sleep,
Not feel like I'm 300 years old,
Enjoy the warm weather instead of dreading it,
Enjoy gardening, walks, even working and cleaning the house!
Live life again...
What do I think of you?
Screw you Behcet's!
My Ode to Behcet's...
(Trust me I could go on for hours of what I'd do without it)
I decided to write this after yet another reaction to a new medication. Last night I finally tried Enbrel. Why did I wait so long to try it you ask? Simple. I haven't been feeling well. I try to wait until I'm feeling somewhat decent before starting a new medication in case I end up having to go the ER. Been there, done that and it's not fun.
So what happened with Enbrel right?
First you need to know Enbrel is an injection. The preferred site is your leg according to the info they sent me. And I've gotten way to much shit from the manufacturer of Enbrel. Way too much. I held the pen and Jason hit the button for me for it to inject. I made it less than 5 seconds. Probably more like 2 seconds. It was a burning pain nothing like I've felt before. The rest of the night I had a burning pain in my leg and nausea that woke me up every 30 minutes. This continued throughout the night, so sleep there was not. I woke up this morning and there is a scab where the injection was given. Needless to say I will be watching the area closely and I can add another medication to my growing list of allergies.
On a completely different note I am very upset about a letter my Behcet's friend received from the doctor. I'm upset for many reasons for this one and cannot say all I want to because I need to keep my friend anonymous. I feel it's important you read this and understand what we go through as someone with chronic pain. I've known druggies before and the person who received this letter is NOT a druggie. Here's the letter.
Dear ***,
I'm sorry to hear that *** had another bad episode of pain. I think we did have a protocol of sorts, it just isn't always sufficient to completely eliminate her/his pain- we talked about using ibuprofen vs. naproxen, and the other measures, but it just isn't enough sometimes. The difficulty is that we really can't do narcotics either- they may distract him/her from the pain since they can give her/him a kind of "high", but it's not appropriate therapy, and it will ultimately lead to him/her becoming dependant on them. In fact, I wonder if she/he is already dependant on them and that's part of the reason why his/her pain keeps coming back. If we wanted to further look at this possibility we could perhaps consider having her/him see an addiction specialist for an evaluation, to help us decide if some amount of narcotic dependence could be playing a role in his/her pain.
Another thought about this particular episode, since she/he has the blurry vision and the nausea is that it seems an awful lot like a migraine and we could try a triptan, such as sumatriptan. I know he's/she's tried it in the past without success, but as long as she's/he's not had a serious side effect from it, it might not hurt to try it again. I will go ahead and order some to the WM pharmacy if you decide you would like to pick it up and give it a try (it's a nasal spray- can use it twice in 24 hours, and should not use it for more than 4 days in a 30 day period).
Another thing we could consider adding to the protocol would be a therapist visit. Perhaps at times like this when she/he gets really bad, myself or Dr. Monroe could try to contact behavioral health about getting him/her seen that day by the behavioral health department so he/she could talk with a therapist about CBT pain management techniques and they can help her/him overcome her/his acute crisis (I mean- in addition to the regular CBT treatments we are setting up, I'm wondering if maybe we can use them as a resource to help with these acute attacks).
I'm sorry everything has been so frustrating, hopefully some of these ideas might help us out. Cheers-
Dr. Roberts
First, I'd like to let you know Dr. Roberts that not everyone gets a "high" as you call it from medications. Second, narcotics, if used as prescribed, the addiction risk is low. Why do I know this? Because I've discussed this with my doctor friends. Third, I hope that you require narcotics some day and they do not give them to you. Maybe you'll be blessed with this disease and can figure out how to manage without pain pills. Fourth, this doctor should be forced to go back to med school and be taught a compassion/caring class. And last, "cheers"? Really? There's nothing cheerful about this letter and maybe you are thinking drinking? Maybe your secret addiction? Perhaps...(think I'm being mean? Too bad, get off my blog)
Yes, this note upsets me because when I my adhesion come back in 2007 I went to MAPS pain clinic in Coon Rapids by my own choice and was treated like a drug addict because I used 30 vicodin every 2 months for my pelvic adhesion pain. (I will go more into it at a later date) So I do understand what it's like to be on the side of needing medications. I also understand the side of dealing with drug seekers- I saw it all too often at the clinics when I was working. I've also worked with doctors who refuse to give narcotics to anyone. I've also worked with doctors who will only give older people narcotics and frown upon the younger people who need it. So what's the solution? Good question. A magic button health care professionals can push that relieves all pain for patients so we don't need medications. Sounds good to me.
So what's my excuse for the monthly posting? It's summer and I've been on my anti-Internet kick. So there:)
"Never forget why you went into the medical profession because some day you may need someone to help take care of you." (Let's hope they went into the field to help others and not for the money, right?) ~Chrissy
Friday, June 15, 2012
One more med to cross of the list...
As usual my body has decided to reject the new medication to treat my Behcet's. Cross Humira off the list. I'll make this as least sharing as possible for those of you who don't do well hearing about female problems...
I started the Humira on a Wednesday night. I couldn't push the button to give myself the injection. No matter how hard I tried I just couldn't do it. I knew what was coming. Yes, I can get a shot no problem, but injecting yourself is another matter. Thankfully Jacob, my 12 year old brother-in-law, had no problem hitting the button for me. In fact he was happy to do it. Not sure if it's because he got to give a shot or to get back at me for making him get shots at the doctor...
The good news is I didn't end up in the ER-yay! The bad news is it gave me my menstrual cycle. Here's the TMI- you'll get over it. I suppress my cycle due to my endometriosis and pelvic adhesion. They cause major pain when I have my cycle. Imagine laying in bed for 5 days straight when you get your cycle because it feels like someone is repeatedly punching you in the stomach. I'll stop there. At first I didn't think anything of it. Thought it was some fluke. Then it happened again the following week. Not normal. So we figured it was the Humira. There's a 1%-5% chance of patient's on Humira getting menstrual irregularity I'm told.
Next on my list is Enbrel. The prior authorization was approved. By the way, what a joke prior auths are. Those will be a different nights topic:) I called to activate my Enbrel card today so I can get it for either free or very cheap. Next was the call to the pharmacy with my Enbrel card number. For some reason the pharmacy is having problems running my card. Not sure if it's because they don't do it enough (as one pharmacist admitted via phone) or if there is something wrong with my activation, but I doubt that as I spoke with Enbrel twice to confirm the activation was working. Hopefully the pharmacy will call tomorrow with good news. A site note about Enbrel or the makers of it is they send out a sharps container for your needles once they are used. Do you know how great that is? Humira didn't do that. The drug companies make way too much money, every company should be required to do this by law.
Brief update on the lawyer. I chose Hoglund Law. She was very nice and well informed. They took on my case. I left actually feeling good. I didn't have to defend myself like most of us with Behcet's do over and over again. I did a brief update via phone today with another associate of theirs. I am now waiting for the next decision from disability which can take 3-5 months. Drawing a blank to the specific name of it at the moment.
On a side note, I managed to drop a heavy object on my foot Tuesday. More like the object fell off a shelf due to me moving something close by. Went to the doctor today to get an x-ray due to worsening symptoms. There might be one or two areas that could be fractured but it's hard to tell due to where the injury is. Waiting for the official read from the radiologist. Prob not fractured but better to be safe then sorry. Plus I got a stylish black surgical shoe from the doctor's office. You are so jealous aren't you? So that's where I'm at all around. Pain, swelling, and all that good stuff is the same. Headaches have been worse this week. Blah, blah, blah, right?
Good night everyone! I'm off to have my usual crazy dreams from the night sweats...
Good times, Good times...
“The good times of today, are the sad thoughts of tomorrow.” Bob Marley
I started the Humira on a Wednesday night. I couldn't push the button to give myself the injection. No matter how hard I tried I just couldn't do it. I knew what was coming. Yes, I can get a shot no problem, but injecting yourself is another matter. Thankfully Jacob, my 12 year old brother-in-law, had no problem hitting the button for me. In fact he was happy to do it. Not sure if it's because he got to give a shot or to get back at me for making him get shots at the doctor...
The good news is I didn't end up in the ER-yay! The bad news is it gave me my menstrual cycle. Here's the TMI- you'll get over it. I suppress my cycle due to my endometriosis and pelvic adhesion. They cause major pain when I have my cycle. Imagine laying in bed for 5 days straight when you get your cycle because it feels like someone is repeatedly punching you in the stomach. I'll stop there. At first I didn't think anything of it. Thought it was some fluke. Then it happened again the following week. Not normal. So we figured it was the Humira. There's a 1%-5% chance of patient's on Humira getting menstrual irregularity I'm told.
Next on my list is Enbrel. The prior authorization was approved. By the way, what a joke prior auths are. Those will be a different nights topic:) I called to activate my Enbrel card today so I can get it for either free or very cheap. Next was the call to the pharmacy with my Enbrel card number. For some reason the pharmacy is having problems running my card. Not sure if it's because they don't do it enough (as one pharmacist admitted via phone) or if there is something wrong with my activation, but I doubt that as I spoke with Enbrel twice to confirm the activation was working. Hopefully the pharmacy will call tomorrow with good news. A site note about Enbrel or the makers of it is they send out a sharps container for your needles once they are used. Do you know how great that is? Humira didn't do that. The drug companies make way too much money, every company should be required to do this by law.
Brief update on the lawyer. I chose Hoglund Law. She was very nice and well informed. They took on my case. I left actually feeling good. I didn't have to defend myself like most of us with Behcet's do over and over again. I did a brief update via phone today with another associate of theirs. I am now waiting for the next decision from disability which can take 3-5 months. Drawing a blank to the specific name of it at the moment.
On a side note, I managed to drop a heavy object on my foot Tuesday. More like the object fell off a shelf due to me moving something close by. Went to the doctor today to get an x-ray due to worsening symptoms. There might be one or two areas that could be fractured but it's hard to tell due to where the injury is. Waiting for the official read from the radiologist. Prob not fractured but better to be safe then sorry. Plus I got a stylish black surgical shoe from the doctor's office. You are so jealous aren't you? So that's where I'm at all around. Pain, swelling, and all that good stuff is the same. Headaches have been worse this week. Blah, blah, blah, right?
Good night everyone! I'm off to have my usual crazy dreams from the night sweats...
Good times, Good times...
“The good times of today, are the sad thoughts of tomorrow.” Bob Marley
Wednesday, May 30, 2012
The Walking Dead? No, it's just Behcet's...
Last week I was told by my mother-in-law I look like a zombie. This was due to me walking and looking like one. It was a night of the usual severe pain and fatigue, where every move kills your body.
I, of course, laughed at this because of how much I hate zombies (traumatized as child at the babysitters from watching Night Of The Living Dead- yet this doesn't keep me from watching The Walking Dead). And yes, walking like this happens often.
This weekend I thought I'd give golf a try again. After the first hole I threw in the flag. I could feel it in my wrists and elbows. I decided to not have a repeat of last time. The feeling of how I felt afterwards was too fresh in my mind. When will I golf again? I'm guessing next year when the thoughts of how I feel afterward are long forgotten.
I also received my denial of disability this past week. Surprise surprise...I know it's going to be a long fight, especially after hearing stories from other BD'ers. I find the letter rather amusing. It pretty much states my condition is not severe enough to keep me from working. What I wouldn't give for the people who decided this to be hit with this disease. I wish they were forced to spend a week with me or in my body so they may understand. I have a meeting with a disability lawyer next week. I'll be spending my good time (time where I can semi-function) gathering info from websites and my own records I've kept to give to the lawyers.
I came across something rather interesting a couple days ago:
I, of course, laughed at this because of how much I hate zombies (traumatized as child at the babysitters from watching Night Of The Living Dead- yet this doesn't keep me from watching The Walking Dead). And yes, walking like this happens often.
This weekend I thought I'd give golf a try again. After the first hole I threw in the flag. I could feel it in my wrists and elbows. I decided to not have a repeat of last time. The feeling of how I felt afterwards was too fresh in my mind. When will I golf again? I'm guessing next year when the thoughts of how I feel afterward are long forgotten.
I also received my denial of disability this past week. Surprise surprise...I know it's going to be a long fight, especially after hearing stories from other BD'ers. I find the letter rather amusing. It pretty much states my condition is not severe enough to keep me from working. What I wouldn't give for the people who decided this to be hit with this disease. I wish they were forced to spend a week with me or in my body so they may understand. I have a meeting with a disability lawyer next week. I'll be spending my good time (time where I can semi-function) gathering info from websites and my own records I've kept to give to the lawyers.
I came across something rather interesting a couple days ago:
Wednesday, May 23, 2012
The Quest For A Normal Life...
The quest for a normal life...not something most people would give a second thought to. For me, I get a bug up my ass every so often to try to do something normal, to live a normal life...the life I use to have before this horrible disease took it away from me.
Last weekend it was golf. I haven't been golfing since I got sick- mainly because I can't walk the course and our golf cart wasn't working. Now the golf cart is working so Jason and I went golfing. It's a 9 course hole at our trailer. I could feel the pain after I was done with the first hole. I knew it was going to be hell the next day but the need to feel normal overwhelmed me. I was willing to suffer in order to do something normal. I know I am not alone in this. My Behcet's friends understand the need for this.
And yes, it was fun!
My wrists and elbows took it the worst. The three days following golfing felt like my wrists and elbows had been broken and put back together. Bruised on the inside and out. Even with pain meds it was terrible.
You'd think this would be enough to stop me from doing it again but it's not. Why? The answer is pretty simple. I long for these times. The days of doing normal things. Even if it's one normal thing a week. Even once a month. Either way, I'll take it. It's these normal things that stop me from going insane from sitting around day after day.
I know my life will never be normal again or there's a very slim chance of it. But then again, what is normal? Is there really such thing as normal? So I will say, I will try to have moments of what is normal to me even with this disease.
"It is almost impossible to remember how tragic a place this world is when one is playing golf. " ~Robert Lynd
Last weekend it was golf. I haven't been golfing since I got sick- mainly because I can't walk the course and our golf cart wasn't working. Now the golf cart is working so Jason and I went golfing. It's a 9 course hole at our trailer. I could feel the pain after I was done with the first hole. I knew it was going to be hell the next day but the need to feel normal overwhelmed me. I was willing to suffer in order to do something normal. I know I am not alone in this. My Behcet's friends understand the need for this.
And yes, it was fun!
My wrists and elbows took it the worst. The three days following golfing felt like my wrists and elbows had been broken and put back together. Bruised on the inside and out. Even with pain meds it was terrible.
You'd think this would be enough to stop me from doing it again but it's not. Why? The answer is pretty simple. I long for these times. The days of doing normal things. Even if it's one normal thing a week. Even once a month. Either way, I'll take it. It's these normal things that stop me from going insane from sitting around day after day.
I know my life will never be normal again or there's a very slim chance of it. But then again, what is normal? Is there really such thing as normal? So I will say, I will try to have moments of what is normal to me even with this disease.
"It is almost impossible to remember how tragic a place this world is when one is playing golf. " ~Robert Lynd
Wednesday, May 16, 2012
Changes In Weather...
How do the changes in weather affect Behcet's? Good question...
I've been MIA on here for a while for numerous reasons. One of them is severe swelling and pain in my poor little fingers. Another reason is, well, I don't have a good reason:)
Everyone says they are worse off when the weather changes. Changes from hot to cold, from cold to hot, with rain, with barometric pressure changes, full moon, etc...
I've tried for the past couple months to pay attention to this but some days it's impossible to track. Not sure if it's because my symptoms are all over the place or what. I've noticed the day before it rains I have more pain. Also when the changes from warm to cold. We had a couple days where it was warm and then dropped back down and it was pure hell. Something that is new to me this year is going from winter to summer. Looking back, my symptoms were so much less than they are now. *Sigh*
This past week it has been gorgeous out- 75 and sunny! Woot Woot! Unfortunately I've had more swelling and stiffness in my fingers and feet than I have ever had. It was so severe that not moving them made them more stiff but if I moved them they were painful, even with pain pills. It was a lose-lose situation.
It is better today or good enough to write on here. At first I thought it was because I planted a couple flowers but then the pain and stiffness continued so I knew that was not the cause. Thankfully:) I've already had to cut back on gardening majorly and if I had to give it up completely... I don't know what I'd do.
Something I am super happy about is it's summer (Or close to it) and the birds are out singing along with the other animals I love to watch- chipmunks, pheasants, geese, geese babies (they are so fluffy and cute I wanna pick them up and snuggle with them), ducks, etc. I hope you are enjoying it as much as I am. I've had a visitor called hyles lineata, or sphinx moth, lately and it's been interesting. He/She's been hitting up our hanging baskets and will let you get right next to it and take pics. Pics are below.
"In summer, the song sings itself."-William Carlos Williams
I've been MIA on here for a while for numerous reasons. One of them is severe swelling and pain in my poor little fingers. Another reason is, well, I don't have a good reason:)
Everyone says they are worse off when the weather changes. Changes from hot to cold, from cold to hot, with rain, with barometric pressure changes, full moon, etc...
I've tried for the past couple months to pay attention to this but some days it's impossible to track. Not sure if it's because my symptoms are all over the place or what. I've noticed the day before it rains I have more pain. Also when the changes from warm to cold. We had a couple days where it was warm and then dropped back down and it was pure hell. Something that is new to me this year is going from winter to summer. Looking back, my symptoms were so much less than they are now. *Sigh*
This past week it has been gorgeous out- 75 and sunny! Woot Woot! Unfortunately I've had more swelling and stiffness in my fingers and feet than I have ever had. It was so severe that not moving them made them more stiff but if I moved them they were painful, even with pain pills. It was a lose-lose situation.
It is better today or good enough to write on here. At first I thought it was because I planted a couple flowers but then the pain and stiffness continued so I knew that was not the cause. Thankfully:) I've already had to cut back on gardening majorly and if I had to give it up completely... I don't know what I'd do.
Something I am super happy about is it's summer (Or close to it) and the birds are out singing along with the other animals I love to watch- chipmunks, pheasants, geese, geese babies (they are so fluffy and cute I wanna pick them up and snuggle with them), ducks, etc. I hope you are enjoying it as much as I am. I've had a visitor called hyles lineata, or sphinx moth, lately and it's been interesting. He/She's been hitting up our hanging baskets and will let you get right next to it and take pics. Pics are below.
"In summer, the song sings itself."-William Carlos Williams
Thursday, May 3, 2012
Life's Not Fair...
Life's not fair. We all know it. You know it more at certain times in your life than others. What if your life was not fair every single day, with every single decision you make?
For those of us with Behcet's, this is reality. If you think I'm whining about it, please read on.
This is about the choices I have to make and not that I have been given this disease.
Every decision I make causes my body to have a reaction. These reactions are not always good. Wish I could say they were. Even something as simple as getting ready for work, going to the store, or even cleaning the toilet causes me either pain, fatigue, some other symptom, or a combo of all. I can't think of a time recently that I was out and about doing something normal, like grocery shopping, where it didn't send my body into a flare up the next day. Or make me feel like my body has been bruised and beaten the next day. Sound fun? It's not.
I had to make a decision a couple days ago about my gramma. It was my gramma's birthday (yes this is how I spell and say grandma- we all have our own way, so shut it:). Her 82nd birthday to be exact. I had to decide to go or stay home. I felt like crap. Severe body aches and fatigue. Already feeling like this, it was most likely I would miss work the following day. Not 100% guarantee I would miss work but a great chance. The decision for me at this point to go to my gramma's was simple. Why?
My reasons were 1) I missed Christmas Eve last year with her due to being sick. 2) How many more birthdays is my gramma is going to have?
Normal people do not have to make decisions like those of us living with chronic illness. Can you imagine deciding picking between your gramma's birthday (which may be her last) or work the next day? What would you pick? Maybe my ethics are different from others. Maybe I'm sick of missing out on family things due to this disease. Maybe if you had to chose you'd chose different. Looking back, I wouldn't change my decision.
Whatever the risks with the decisions we make, those of us with Behcet's sometimes take them knowing we will miss something the next day just to say we had a normal day in our lives every once in a great while.
Here's a thought for you to ponder. If you could choose one thing a day that you could do, what would it be? If you had a choice between cooking dinner or playing with your children for 30 minutes, what would it be? How about vacuuming the house or making dinner for your family? How about going to work or cooking for your family? Fishing or cleaning one thing in the house? Going to your family get together or missing work the next day? Remember you can't do both most days and whatever you do will affect how you feel tomorrow. So what would your one thing for the day be?
"The difficulty of life is in the choice." George Moore
Note: The majority of this post was written around March 18th back when I was still working, but because I've been such a procrastinator lately with my posts...well better late than never:)
For those of us with Behcet's, this is reality. If you think I'm whining about it, please read on.
This is about the choices I have to make and not that I have been given this disease.
Every decision I make causes my body to have a reaction. These reactions are not always good. Wish I could say they were. Even something as simple as getting ready for work, going to the store, or even cleaning the toilet causes me either pain, fatigue, some other symptom, or a combo of all. I can't think of a time recently that I was out and about doing something normal, like grocery shopping, where it didn't send my body into a flare up the next day. Or make me feel like my body has been bruised and beaten the next day. Sound fun? It's not.
I had to make a decision a couple days ago about my gramma. It was my gramma's birthday (yes this is how I spell and say grandma- we all have our own way, so shut it:). Her 82nd birthday to be exact. I had to decide to go or stay home. I felt like crap. Severe body aches and fatigue. Already feeling like this, it was most likely I would miss work the following day. Not 100% guarantee I would miss work but a great chance. The decision for me at this point to go to my gramma's was simple. Why?
My reasons were 1) I missed Christmas Eve last year with her due to being sick. 2) How many more birthdays is my gramma is going to have?
Normal people do not have to make decisions like those of us living with chronic illness. Can you imagine deciding picking between your gramma's birthday (which may be her last) or work the next day? What would you pick? Maybe my ethics are different from others. Maybe I'm sick of missing out on family things due to this disease. Maybe if you had to chose you'd chose different. Looking back, I wouldn't change my decision.
Whatever the risks with the decisions we make, those of us with Behcet's sometimes take them knowing we will miss something the next day just to say we had a normal day in our lives every once in a great while.
Here's a thought for you to ponder. If you could choose one thing a day that you could do, what would it be? If you had a choice between cooking dinner or playing with your children for 30 minutes, what would it be? How about vacuuming the house or making dinner for your family? How about going to work or cooking for your family? Fishing or cleaning one thing in the house? Going to your family get together or missing work the next day? Remember you can't do both most days and whatever you do will affect how you feel tomorrow. So what would your one thing for the day be?
"The difficulty of life is in the choice." George Moore
Note: The majority of this post was written around March 18th back when I was still working, but because I've been such a procrastinator lately with my posts...well better late than never:)
Monday, April 30, 2012
The Most Difficult Decision Yet...
What is the most difficult decision you've had to make in your life? Is it marriage? Divorce? Children? Something job related? A health issue? Maybe surgery? Buying a house? Letting go of your house? Deciding to not let someone be in your life anymore? Dealing with the death of a loved one?
For me it was the decision to go on full LOA. Since graduating from nursing school, work has been a huge part of my life. I take pride in my nursing career. I worked hard to get where I'm at. I had plans to go on and be a nurse practitioner in family practice. I love doing what I do. How many people can say that?
My symptoms have been worsening over the past couple months. I wish I could say I didn't see this coming, but I knew it was. At least some where deep down in me I knew it was coming. I did try to deny it for a long time. My call-ins had become more frequent and it's been impossible for me to get out of bed most days. Then there's the memory problems, headaches, and lovely new symptoms. I remember the last time I was at work, I was so miserable pain wise, I had a bad attitude. I never have a bad attitude at work. Between not being at work for almost two weeks and feeling like over all poo, this is when I really started to look at the possibility of full LOA. Another Behcet's reality had struck me.
The guilt of calling in and the stress of trying to make it to work was horrible. Now that I am on leave, it is less stressful but unfortunately hasn't changed my symptoms. I've had new ones pop up and old ones worsen. Damn magical grab bag of Behcet's. It's never ending some days.
One of the hardest part of this for me is the changing from a go-go-go type person to laying around the house. I've slowly gotten use to it since being sick but now my social interaction is gone. Or at least decreased. I still have my family on a daily basis. Thank god for social media and the support I get from my BD girls on face book. Some of you might say find a hobby. Well it's not that easy. When you feel like shit most days all you can do is lay around. If I was feeling well enough to have a hobby that required me to do something other than lay in bed, I'd be working. Netflix has become my hobby. Thankfully I'm a movie kind of girl. If you weren't a movie person before getting Behcet's, you would become one after, trust me. I have my writing but I'm not always well enough to do that either.
Another thing that is seriously messed up about this whole situation and trying for disability is money. How the hell do they expect people to live? I have long term disability but it takes 90 days to kick in. So basically for me there's a 3 month waiting period without money. I won't even get in to how long I think it's gonna take me to get actual disability from the state- I've heard anywhere from 3 years to 7 years it takes people with Behcet's, sometimes more. Now what about others who don't have long term disability through their work? I'm getting pissed off just thinking about what people have to go through until they get disability. No wonder people end up on the streets or living with family. I hope and wish for a faster way for others to get disability who have to deal with this. Remember stress only makes our symptoms worse. Dealing with money problems is stressful for anyone but multiply it by 100 with a disease like Behcet's.
Oh yeah, let's not forget about health insurance. After 3 months my health insurance is gone unless I pay cobra. We all know how ridiculous cobra costs. Then from what I remember before I can get Minnesota medical assistance, I have to be without health insurance for 3-4 months. So basically I'm fucked if I get sick. I say that because I will have to pay out of pocket. Do you have any idea what it's like to pay out of pocket for a doctor's visit? And we have idiots here who think we don't need health insurance for everyone. Yes we do folks! Don't get me wrong I don't want the government in our lives anymore than you, but some things we do need. [Note: I'm not endorsing any political party. I would like to keep politics out of my blog:)] Try getting a disease like this and live without health insurance. About 10 years ago I was nursing school and was at a job where I didn't qualify for health insurance. I developed an urinary tract infection-severe enough I'm lucky I didn't end up in the hospital. Do you have any idea how much it cost for those antibiotics without insurance? $125. How much for the office visit and labs? I don't recall but I can tell you that office visits right now run around $300 on average minus the labs. Now how can someone afford this when they are not working, waiting for disability, and have no cash coming in?
As you read this, I hope you understand that those of us with Behcet's do want to work but the disease can make it impossible for this to happen. My only words of wisdom for tonight are to be happy with what you have- Job, health insurance, your health, house, etc., because you never know when something like this will hit you and you'll be left without this stuff.
"We tend to forget that happiness doesn't come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have." Frederick Keonig
Note: This post was started way back on 4/4/12. I'm a bit behind with my posting on account of feeling like poo and being engrossed in The Hunger Games trilogy:)
For me it was the decision to go on full LOA. Since graduating from nursing school, work has been a huge part of my life. I take pride in my nursing career. I worked hard to get where I'm at. I had plans to go on and be a nurse practitioner in family practice. I love doing what I do. How many people can say that?
My symptoms have been worsening over the past couple months. I wish I could say I didn't see this coming, but I knew it was. At least some where deep down in me I knew it was coming. I did try to deny it for a long time. My call-ins had become more frequent and it's been impossible for me to get out of bed most days. Then there's the memory problems, headaches, and lovely new symptoms. I remember the last time I was at work, I was so miserable pain wise, I had a bad attitude. I never have a bad attitude at work. Between not being at work for almost two weeks and feeling like over all poo, this is when I really started to look at the possibility of full LOA. Another Behcet's reality had struck me.
The guilt of calling in and the stress of trying to make it to work was horrible. Now that I am on leave, it is less stressful but unfortunately hasn't changed my symptoms. I've had new ones pop up and old ones worsen. Damn magical grab bag of Behcet's. It's never ending some days.
One of the hardest part of this for me is the changing from a go-go-go type person to laying around the house. I've slowly gotten use to it since being sick but now my social interaction is gone. Or at least decreased. I still have my family on a daily basis. Thank god for social media and the support I get from my BD girls on face book. Some of you might say find a hobby. Well it's not that easy. When you feel like shit most days all you can do is lay around. If I was feeling well enough to have a hobby that required me to do something other than lay in bed, I'd be working. Netflix has become my hobby. Thankfully I'm a movie kind of girl. If you weren't a movie person before getting Behcet's, you would become one after, trust me. I have my writing but I'm not always well enough to do that either.
Another thing that is seriously messed up about this whole situation and trying for disability is money. How the hell do they expect people to live? I have long term disability but it takes 90 days to kick in. So basically for me there's a 3 month waiting period without money. I won't even get in to how long I think it's gonna take me to get actual disability from the state- I've heard anywhere from 3 years to 7 years it takes people with Behcet's, sometimes more. Now what about others who don't have long term disability through their work? I'm getting pissed off just thinking about what people have to go through until they get disability. No wonder people end up on the streets or living with family. I hope and wish for a faster way for others to get disability who have to deal with this. Remember stress only makes our symptoms worse. Dealing with money problems is stressful for anyone but multiply it by 100 with a disease like Behcet's.
Oh yeah, let's not forget about health insurance. After 3 months my health insurance is gone unless I pay cobra. We all know how ridiculous cobra costs. Then from what I remember before I can get Minnesota medical assistance, I have to be without health insurance for 3-4 months. So basically I'm fucked if I get sick. I say that because I will have to pay out of pocket. Do you have any idea what it's like to pay out of pocket for a doctor's visit? And we have idiots here who think we don't need health insurance for everyone. Yes we do folks! Don't get me wrong I don't want the government in our lives anymore than you, but some things we do need. [Note: I'm not endorsing any political party. I would like to keep politics out of my blog:)] Try getting a disease like this and live without health insurance. About 10 years ago I was nursing school and was at a job where I didn't qualify for health insurance. I developed an urinary tract infection-severe enough I'm lucky I didn't end up in the hospital. Do you have any idea how much it cost for those antibiotics without insurance? $125. How much for the office visit and labs? I don't recall but I can tell you that office visits right now run around $300 on average minus the labs. Now how can someone afford this when they are not working, waiting for disability, and have no cash coming in?
As you read this, I hope you understand that those of us with Behcet's do want to work but the disease can make it impossible for this to happen. My only words of wisdom for tonight are to be happy with what you have- Job, health insurance, your health, house, etc., because you never know when something like this will hit you and you'll be left without this stuff.
"We tend to forget that happiness doesn't come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have." Frederick Keonig
Note: This post was started way back on 4/4/12. I'm a bit behind with my posting on account of feeling like poo and being engrossed in The Hunger Games trilogy:)
Tuesday, April 24, 2012
What The Beginning Of A Flare Up Feels Like...
Ever wonder what the beginning of a flare up feels like? If so, you're in luck because I'm in the mood to share and happen to be dealing with one.
First I usually start getting fatigued. Fatigue like you've been running around doing errands for 24 hours straight. It eventually gets worse as the time goes on. It gets so bad that you can barely lift your arms and legs. Even typing this is difficult. Extremely difficult. (It became so difficult I had to stop typing and return the next day to finish). Imagine your arms and legs weighing 500 pounds each and try to lift them. Every effort causing you to become more exhausted. If you are lucky enough to get up and move around you feel drunk. And I'm talking the kind of drunk where it's difficult to walk because you feel dizzy and everything's spinning.
Next comes the body aches and pain. For me it feels like every joint in my fingers, hips, knees, and feet have been beaten with a baseball bat. Sometimes more joints are affected. Sometimes it feels like my bones are bruised. The pain starts as a dull ache but then after a couple hours it turns to an intense throbbing pain. Sometimes pain meds help but usually once it gets so bad there's not a damn thing you can do about it. Imagine your legs, hips, feet, and fingers throbbing constantly. There really is no way to describe it as everyone handles pain differently. I ask you to think back to a time you had severe pain- was it a broken bone? A kick to your boys? :) Well times that by 10 and you might be able to understand but probably not.
Next is my favorite- the sweats. (Why can't it be sweets?) This usually comes a couple hours after the fatigue and dull aching pain. My body feels like it's on fire inside and out. I usually run a low grade fever that ranges from 99.2 to 99.6 normally, or I should say since getting sick. This is common for autoimmune disorders. During the beginning of a flare up my temperature is usually higher than the usual. The highest I can recall when checking it was 100.2. I no longer check for a temperature as I am use to this being something that comes along with the disease. You know what's awesome? Laying in bed and sweating for no reason. Wait, I take that back. The most awesome part of this is the nightmares that come with the sweating. Night sweat nightmares I like to call them.
From here it all goes downhill. My flare ups usually last from 1-3 days. I call them my flare ups because my symptoms are 100 times worse than they are normally. These are the days where I do the shuffle walk. And that's assuming I can even get out of bed. My flare ups don't always have these wonderful warning signs. Sometimes I wake up in a flare. Sometimes the flares just hit me. When I first started getting sick this was my warning of what was to come. My body has apparently turned off my tornado warning sign to only work when it wants to:)
Well my friends, don't you feel enlightened now? I'll bet you do.
"Find a place inside where there's joy, and the joy will burn out the pain." Joseph Campbell
First I usually start getting fatigued. Fatigue like you've been running around doing errands for 24 hours straight. It eventually gets worse as the time goes on. It gets so bad that you can barely lift your arms and legs. Even typing this is difficult. Extremely difficult. (It became so difficult I had to stop typing and return the next day to finish). Imagine your arms and legs weighing 500 pounds each and try to lift them. Every effort causing you to become more exhausted. If you are lucky enough to get up and move around you feel drunk. And I'm talking the kind of drunk where it's difficult to walk because you feel dizzy and everything's spinning.
Next comes the body aches and pain. For me it feels like every joint in my fingers, hips, knees, and feet have been beaten with a baseball bat. Sometimes more joints are affected. Sometimes it feels like my bones are bruised. The pain starts as a dull ache but then after a couple hours it turns to an intense throbbing pain. Sometimes pain meds help but usually once it gets so bad there's not a damn thing you can do about it. Imagine your legs, hips, feet, and fingers throbbing constantly. There really is no way to describe it as everyone handles pain differently. I ask you to think back to a time you had severe pain- was it a broken bone? A kick to your boys? :) Well times that by 10 and you might be able to understand but probably not.
Next is my favorite- the sweats. (Why can't it be sweets?) This usually comes a couple hours after the fatigue and dull aching pain. My body feels like it's on fire inside and out. I usually run a low grade fever that ranges from 99.2 to 99.6 normally, or I should say since getting sick. This is common for autoimmune disorders. During the beginning of a flare up my temperature is usually higher than the usual. The highest I can recall when checking it was 100.2. I no longer check for a temperature as I am use to this being something that comes along with the disease. You know what's awesome? Laying in bed and sweating for no reason. Wait, I take that back. The most awesome part of this is the nightmares that come with the sweating. Night sweat nightmares I like to call them.
From here it all goes downhill. My flare ups usually last from 1-3 days. I call them my flare ups because my symptoms are 100 times worse than they are normally. These are the days where I do the shuffle walk. And that's assuming I can even get out of bed. My flare ups don't always have these wonderful warning signs. Sometimes I wake up in a flare. Sometimes the flares just hit me. When I first started getting sick this was my warning of what was to come. My body has apparently turned off my tornado warning sign to only work when it wants to:)
Well my friends, don't you feel enlightened now? I'll bet you do.
"Find a place inside where there's joy, and the joy will burn out the pain." Joseph Campbell
Saturday, April 21, 2012
An Update Of The Past Week...
I took a week off to have to myself and spend some days with Jason. Sometimes in life you just need a break. I spent it up at our trailer at Travelers Country Club in Clear Lake, MN. Despite the weather being cold, it was nice to get away. If ever in MN, come on by! People rent out their trailers all the time. www.travelerscc1.com. Now that I have my advertising done, I'll get on with business:)
My week was fairly good symptom-wise. I still had my usual aches, fatigue, and headaches (among other things). Some days better than others. There was one day where it was minimal. One of those rare days that only happen once every couple months for me. I didn't go out and party it up because the days following the feeling good are always hell. This is what I like to call the tornado effect. The nice weather before the storm, only apply it to your body. I was able to get out and walk that day, which was lovely. It was nice to feel the sun on my face, hear the birds chirp, and take in the views of nature. I was able to take some pics of the muskrats that have a home down by the lake. I can still close my eyes and enjoy the walk even though many days have passed since. Maybe you think I'm talking too much about this? Well too bad. You don't realize what you miss until it's gone. It's the little things people rush past because they are too busy caught up in the hustle and bustle. A walk in the sunshine, the laughter of another person, the clouds in the sky, the flowers blooming. Need I go on? The "stop and smell the roses" saying really means something.
What would a week be without dealing with some kind of medication problem for me? Heaven. That's what. I am now onto my millionth medication to try (I may be exaggerating a bit) but that's what it feels like some days. There are times when I want to give up trying meds since my body has decided it wants to be allergic to almost all medications. But then I think what if this one is the one that will get me back to normal? I only have about five more I can try before my list of possibilities runs out. This week it was a call from the pharmacy saying my copay for Humira is going to be $490. Yea, I'll get right on that. Maybe do a little prostitution and that should cover it. I'm joking people! Thankfully Humira has some patient card program that once you register with them your copay is somewhere around $5-10. One blow job ought to cover it. Once again, joking! Or selling myself short:) I registered with Humira and they say it will take 10 days before I get the card. Then I can call my pharmacy and they run the card number and boom, cheap medication. Is that even possible in the USA? Not usually. Before I can start my Humira I need to have a mantoux done. This is to test for tuberculosis if you are not familiar with the term. Just another pain in the butt thing to do and what makes this particular test difficult is needing to have the test read 48-72 hours after getting it administered. Why is this hard? Because I never know how I am going to feel.
That about sums up this past week give or take. I do want to say a special thanks to my dad's cousin Kathy Lundquist for taking the time to go to Tea Source and getting me peppermint tea. You rock Kathy! I am enjoying a cup of tea as I write this. Num Num Num is all I can say:)
I think I'll be back on track to writing more this week. I have several drafts I've started but need to finish. The quote I choose for this post is more my feelings of having to deal with trying medication after medication. I came across it earlier this week and love it. Of course you can apply it to every day life, especially every day Behcet's. I've also decided to throw in some pics of my muskrat friends for fun. And yes I'm up late as it's one of those days that my body is screaming at me in pain. Have a feeling I'll be up off and on tonight.
When the world says, "Give up,"
Hope whispers, "Try it one more time."
Author Unknown
My week was fairly good symptom-wise. I still had my usual aches, fatigue, and headaches (among other things). Some days better than others. There was one day where it was minimal. One of those rare days that only happen once every couple months for me. I didn't go out and party it up because the days following the feeling good are always hell. This is what I like to call the tornado effect. The nice weather before the storm, only apply it to your body. I was able to get out and walk that day, which was lovely. It was nice to feel the sun on my face, hear the birds chirp, and take in the views of nature. I was able to take some pics of the muskrats that have a home down by the lake. I can still close my eyes and enjoy the walk even though many days have passed since. Maybe you think I'm talking too much about this? Well too bad. You don't realize what you miss until it's gone. It's the little things people rush past because they are too busy caught up in the hustle and bustle. A walk in the sunshine, the laughter of another person, the clouds in the sky, the flowers blooming. Need I go on? The "stop and smell the roses" saying really means something.
What would a week be without dealing with some kind of medication problem for me? Heaven. That's what. I am now onto my millionth medication to try (I may be exaggerating a bit) but that's what it feels like some days. There are times when I want to give up trying meds since my body has decided it wants to be allergic to almost all medications. But then I think what if this one is the one that will get me back to normal? I only have about five more I can try before my list of possibilities runs out. This week it was a call from the pharmacy saying my copay for Humira is going to be $490. Yea, I'll get right on that. Maybe do a little prostitution and that should cover it. I'm joking people! Thankfully Humira has some patient card program that once you register with them your copay is somewhere around $5-10. One blow job ought to cover it. Once again, joking! Or selling myself short:) I registered with Humira and they say it will take 10 days before I get the card. Then I can call my pharmacy and they run the card number and boom, cheap medication. Is that even possible in the USA? Not usually. Before I can start my Humira I need to have a mantoux done. This is to test for tuberculosis if you are not familiar with the term. Just another pain in the butt thing to do and what makes this particular test difficult is needing to have the test read 48-72 hours after getting it administered. Why is this hard? Because I never know how I am going to feel.
That about sums up this past week give or take. I do want to say a special thanks to my dad's cousin Kathy Lundquist for taking the time to go to Tea Source and getting me peppermint tea. You rock Kathy! I am enjoying a cup of tea as I write this. Num Num Num is all I can say:)
I think I'll be back on track to writing more this week. I have several drafts I've started but need to finish. The quote I choose for this post is more my feelings of having to deal with trying medication after medication. I came across it earlier this week and love it. Of course you can apply it to every day life, especially every day Behcet's. I've also decided to throw in some pics of my muskrat friends for fun. And yes I'm up late as it's one of those days that my body is screaming at me in pain. Have a feeling I'll be up off and on tonight.
When the world says, "Give up,"
Hope whispers, "Try it one more time."
Author Unknown
Friday, April 13, 2012
Dealing With Discrimination...
If it's not bad enough being thrown a rare autoimmune disease that destroys life as you know it, what's worse is dealing with the discrimination that comes along with it.
Most of us with Behcet's do not look sick. Maybe I should say the general public doesn't see us when we are bad off- having to lay in bed all day due to pain or having to crawl to the toilet secretly wishing we had a catheter in us on those days. It is a silent disease that fights our bodies from within as with many autoimmune disorders. Every day our bodies scream at us to do something about the pain and all the other lovely symptoms that come along with Behcet's. We do not get the disfigurement like Rheumatoid Arthritis (or as far as I know-maybe there are some cases). In fact we are a lot like lupus. Many of us getting a lupus diagnosis at first since symptoms are so similar.
Alright, get to the point Chrissy, right? This post is to tell you about my problems trying to obtain a handicap parking permit. Last week at my doctors appointment, she filled out a handicap parking form. Yesterday was the first day in 5 days that I felt well enough to leave the house. This was my one goal for the day. I went to the DMV in Elk River, near the train tracks, not the government center. I want to distinguish between the two as the government center workers have always been kind when I go there. I went to the closest office as I knew it was going to take all my energy just to get there and back.
I presented my handicap parking certificate to which the lady said "We don't accept photocopied papers." I said, "What? It's not photocopied. I wrote in blue and my doctor wrote in black." I didn't think this would be an issue or we would've use the same pen when filling it out. She then brought it over to another lady, who agreed it was photocopied. I argued some more, only to be told, "Your doctor needs to not write so well, it looks like a photocopy." Seriously? I left there heart broken. As time went on, I started getting pissed off. Why is this OK? Who is it for them to decide what's legit? If it's that questionable then they should be calling the doctors office. Then it hit me. They don't think I'm handicap as I went walking in there with no wheelchair or cane. Is that what it's going to take? If so, that's fucking ridiculous.
Several things happened after this:
1) I decided to call back up there and ask them what I need to do so I do not have this problem next time. I asked if I need to have my doctor use blue pen. They said "We prefer black ink". Wait, what?! I said, "That's what I have and you refused it." They proceeded to tell me I need a "live signature." I replied that is a live signature and you are refusing it. They then told me "If we think it's a fake, we don't have to take it." The lady I spoke with on the phone was named Edna and I do not believe she was the one that helped me as she needed to put me on hold as she did not recall dealing with a handicap parking permit. I did not get the other two ladies names when I was there but one was about my age- early 30's with brown hair pulled back and the other lady was in her 40's with black hair almost down to her shoulders. If you're reading this, you know who you are and shame on you.
2) I was so upset after this, I had done everything they wanted, so why am I having such a hard time obtaining my permit? I decided to file a complaint with the DMV. After finding the number, I spoke with a lady who was very nice and promised to pass my complaint along to the appropriate person. About two hours later I received a call from a Tom Evans at the DMV. Unfortunately, I was in bed with an occipital migraine and in no shape to have a conversation about this. I ended up calling him back after work hours and leaving a message with my story. I made sure to let him know I felt discriminated against because I did. I have no doubt that if I had been in a wheelchair, they wouldn't have second guessed it. A couple of my BD friends suggested I go in next time without my hair done and morning breathe and they'll get me in and out ASAP. Ha ha, this was my only laugh for the day yesterday. Thanks girls:) I asked him to email me instead of calling as I never know how I am going to feel and if I will be able to hold a telephone conversation. This is his response from this morning:
As I told my story to my family last night, they shook their heads in disbelief and said a few choice words. Jacob, my 12 year old brother-in-law, said "Chrissy you should've brought a cane with you." I just smiled. Even he understands.
Most of us with Behcet's do not look sick. Maybe I should say the general public doesn't see us when we are bad off- having to lay in bed all day due to pain or having to crawl to the toilet secretly wishing we had a catheter in us on those days. It is a silent disease that fights our bodies from within as with many autoimmune disorders. Every day our bodies scream at us to do something about the pain and all the other lovely symptoms that come along with Behcet's. We do not get the disfigurement like Rheumatoid Arthritis (or as far as I know-maybe there are some cases). In fact we are a lot like lupus. Many of us getting a lupus diagnosis at first since symptoms are so similar.
Alright, get to the point Chrissy, right? This post is to tell you about my problems trying to obtain a handicap parking permit. Last week at my doctors appointment, she filled out a handicap parking form. Yesterday was the first day in 5 days that I felt well enough to leave the house. This was my one goal for the day. I went to the DMV in Elk River, near the train tracks, not the government center. I want to distinguish between the two as the government center workers have always been kind when I go there. I went to the closest office as I knew it was going to take all my energy just to get there and back.
I presented my handicap parking certificate to which the lady said "We don't accept photocopied papers." I said, "What? It's not photocopied. I wrote in blue and my doctor wrote in black." I didn't think this would be an issue or we would've use the same pen when filling it out. She then brought it over to another lady, who agreed it was photocopied. I argued some more, only to be told, "Your doctor needs to not write so well, it looks like a photocopy." Seriously? I left there heart broken. As time went on, I started getting pissed off. Why is this OK? Who is it for them to decide what's legit? If it's that questionable then they should be calling the doctors office. Then it hit me. They don't think I'm handicap as I went walking in there with no wheelchair or cane. Is that what it's going to take? If so, that's fucking ridiculous.
Several things happened after this:
1) I decided to call back up there and ask them what I need to do so I do not have this problem next time. I asked if I need to have my doctor use blue pen. They said "We prefer black ink". Wait, what?! I said, "That's what I have and you refused it." They proceeded to tell me I need a "live signature." I replied that is a live signature and you are refusing it. They then told me "If we think it's a fake, we don't have to take it." The lady I spoke with on the phone was named Edna and I do not believe she was the one that helped me as she needed to put me on hold as she did not recall dealing with a handicap parking permit. I did not get the other two ladies names when I was there but one was about my age- early 30's with brown hair pulled back and the other lady was in her 40's with black hair almost down to her shoulders. If you're reading this, you know who you are and shame on you.
2) I was so upset after this, I had done everything they wanted, so why am I having such a hard time obtaining my permit? I decided to file a complaint with the DMV. After finding the number, I spoke with a lady who was very nice and promised to pass my complaint along to the appropriate person. About two hours later I received a call from a Tom Evans at the DMV. Unfortunately, I was in bed with an occipital migraine and in no shape to have a conversation about this. I ended up calling him back after work hours and leaving a message with my story. I made sure to let him know I felt discriminated against because I did. I have no doubt that if I had been in a wheelchair, they wouldn't have second guessed it. A couple of my BD friends suggested I go in next time without my hair done and morning breathe and they'll get me in and out ASAP. Ha ha, this was my only laugh for the day yesterday. Thanks girls:) I asked him to email me instead of calling as I never know how I am going to feel and if I will be able to hold a telephone conversation. This is his response from this morning:
Dear Ms. Gunderson,
I am very sorry for the trouble you had at the Deputy Registrar office. The manager in charge of our business partner relations is contacting the office in regard to your situation and will offer them remedial training in customer service.
Your first instinct about the office over scrutinizing your application because you don’t appear to be disabled is probably correct. Unfortunately there is quite a bit of fraud associated with the parking certificates but that is no excuse.
If you or your doctor’s office would prefer to FAX your application directly to me I will see that the parking certificate is issued right away.
You may FAX it directly to my desktop at 651-797-XXXX.
Tom Evans
DPS Supervisor
Special Plates/ Plate Impound/ Disability Parking Certificates
(651) 201-XXXX
This email was a blessing. I can't say how thankful I am he is able to help me and willing to help me. I had Jason fax the form from his work and Tom responded back he received the form and will get it in the mail ASAP for me. Thank you Tom!
As I told my story to my family last night, they shook their heads in disbelief and said a few choice words. Jacob, my 12 year old brother-in-law, said "Chrissy you should've brought a cane with you." I just smiled. Even he understands.
I'm sure I will be dealing with discrimination many more times with this handicap parking permit, but as I said in a previous post, they picked the wrong person to mess with because I will speak up and they won't like what I have to say. I hope by you reading this you will not judge people who look normal and have a handicap parking permit. You never know what someone else is dealing with.
The reason I need this is because due to the Behcet's I am at significant risk for falling and need to rest frequently when walking. By the way, I do not go some where unless I absolutely have to or feel decent that day. The days of feeling decent are very rare however. And yes, something I miss most of all is being able to go on walks in the warm weather. The feeling of the sun on my face, hearing the birds chirp, taking in the views of nature. You don't realize what you miss until you don't have it.
I hope no one else has to go through what I did but know there will be others with similar stories to mine because of people's ignorance.
“The greatest ignorance is to reject something you know nothing about” Unknown
Update: I received my handicap parking permit on 4/14/12. The day after I talked with Tom. How's that for service? Once again thank you Tom!
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