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
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