Well this year has been quite a year, hence why I haven't been writing like I should. Lots of things brewing in my head of what I want to write about but today I am going to keep it simple.
Today I just want to say I am thankful for being alive. The fucking disease has claimed way too many lives this year. In fact, so many I don't recall there being so many deaths a year from it. Perhaps I'm just more aware, I don't know. This disease is a horrible thing to live with, only those who live with it will truly understand. Don't I sound thankful today? Hmmm...
I want to give hugs to those who have lost love ones to the B, hugs to the family members and friends who support us, and hugs to those of us living with the B.
I may not always sound thankful, but I am very thankful I am here right now being able to write this.
With that being said, there is a Facebook page worth checking out. It's called MR B's Bechets World Adventure. It raises awareness for Behcet's and honors those lost. It is worth checking out, after all, who can resist seeing MR. B on his adventures?
https://www.facebook.com/MisterBehcets
If I do not make it on before the next holidays, I hope all is well for you and yours.
“It isn't what you have in your pocket that makes you thankful, but what you have in your heart.”~ Unknown
“I am thankful for laughter, except when milk comes out of my nose.”~ Woody Allen
Thursday, November 28, 2013
Tuesday, February 5, 2013
The F word...
Yea I know what you're all thinking- she's gone for months and she comes back with the F word... well it's not the F word you all are thinking of ( you naughty people :) )
The F word is officially going to be Fibromyalgia now. So from here on out if I reference it, I will say the F word. In regards to the actual F word- Fuck- I will be more than glad to spell that out :) Why? Because I like that word. There's a great documentary on that by the way- it discusses how the word came about, the original meaning, etc. Not what you'd think.
Anyways, back to why I haven't been on here forever. Yea, the longest I've been absent from here actually. Hoping to never do this again. It's not that I haven't wanted to write, I've just been that sick. Then there was the holidays. Who isn't busy around the holidays right? What's happened since then? Way too much as usual. I'm just going to skip around as things come to mind.
I've recently been diagnosed with the F word. It actually came as a surprise at my second pain clinic appointment. The previous week I had been at my rheumy's and had a change in symptoms over the past month (at that time). My rheumy had marked it in my chart that it's fibro, so the pain doctor was like oh, you have fibro too? I was like huh? Nothing like being thrown for a loop. Especially when you've had a long night (we were in the hospital the night before for Jason's grandfather) of barely any sleep. So I emailed my rheumy, she said it is a consideration based on some of my symptoms (this is the short version of her note) The pain clinic doctor then did the official diagnosis at my appointment that day. So here I am with another diagnosis. How do I feel about this? It is what it is. One day at a time.
I've also started seeing a psychologist to deal with loss of my old self. This is never an easy thing regardless of what disease you have. Even life changes not related to an illness. I've talked about this before, so I'm not going to touch too much on it. Hoping she can help me get past the difficulty of it. Is it even possible? Or is it going to be something I deal with the rest of my life or until I get better? I think I've taken this step quicker than most people have. It's a difficult thing to admit you need help with. The reality is with this disease, it is a HUGE change in your life. You may not realize it at first, but as you get sicker and sicker (as most of us do) there just comes a time when you realize it's not going away and this is your life. It's not that you should accept defeat, defeat is different than accepting your situation has changed. It's not a giving up because there is always hope, even if it's small. It's just accepting. I've started reading a book about another's struggle with getting sick, it's called: How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. I'm only about two chapters in but so far it's kept my interest. Plus 5 stars on Amazon- how many books get that?
Pain clinic update? Sure why not. I'm settling in to this pain clinic. They aren't the warmest but hoping with time that will get better. I should say the doctor isn't the warmest but I try to think of all the shit she has to deal with from patients. It always amazes me the variety of people I see there- young, middle-aged, old, male, female, pregnant ladies, etc. It's always a reminder that you never know what someone else is going through, so don't judge. And most of these people do not look sick. I've started doing biofeedback therapy, which I can't recall if I've talked about before. It's basically meditating to help relax you and get rid of the pain. It's trying to get your autonomic nervous system to take over. It's a lot like doing deep breathing exercises in yoga but add guided imagery to it. I like it a lot but the problem I'm having is 1) being able to keep being that relaxed all day long just isn't happening. It's great when I do it but once I'm out of that trace like state, well it's just not the same. 2) if I'm sick or in excruciating pain that day I cannot get into it. Maybe practice will make perfect? Who knows. If any of you are interested trying some exercises, here is a link ( I am in no way endorsing Kaiser P. as I've heard they are not that great when it comes to health care from friends and doctors I have worked with):
https://healthy.kaiserpermanente.org/health/care/!ut/p/c4/FcpBCsMgEEDRs-QAwyAkOnYXor1Ca3eDGVIhahCbXr8Nf_f4-MJ_hc-0cU-18I5PDFFKl3bjz5oqnGmVio_rOxpvmTGUCpHjWy7j1lPcBYPz1iyT86Ct1qCUVzDb0QERTUYZM95pwSNn-s7D8AN76O4U/
At biofeedback, Cindy (the biofeedback lady) had mentioned acupuncture. I told her I tried it in the past but it never helped with pain/headaches but I did get very relaxed from it. She suggested I should give it a try again if nothing else it will help to relax. Maybe with another diagnosis they can target my symptoms better.
The eyes are up next. I've started seeing an ophthalmologist instead of a optometrist at the recommendation of a friend who had complications with her eyes from this disease. For those of you who do not know the difference, an ophthalmologist is an actual medical doctor. This is critical for those of us with BD. I am very happy I switched to seeing him. I learned that my tear film is not working correctly resulting in some of the symptoms I'm having. He explained it as normal people have what looks like a lake, where mine are like a shallow lake. He says this is very common in people with autoimmune disorders. I am trialing a preservative free eye drop called Oasis for a month. If this doesn't work for some reason, then I can either try Restasis or get an implanted plug to help the problem. I'm hoping this works as I'm not too keen on an implant or a new medication. Why? My body doesn't tolerate procedures or anything invading it and given my track record with medications, I don't want to add another allergy/intolerance to my insanely growing list. In fact at the eye doctor, the nurse said I have the most allergies she's ever seen and it just might be a record. I wanted to tell her about a patient I had once who had something like 33 allergies. If I ever get close to that, I just may call Guinness Book of World Records...
What about my new injectable med called Kineret? I did OK with it for a while. Then out of nowhere I developed some odd symptoms. By odd I mean any needle stick hurt like a motherf#@%$#, I couldn't even get to injecting b/c everything was amplified by 100%. No joke. At first I thought it was because I hit scar tissue, then thought perhaps a bad needle or the injection site itself, or the lot of medication, so I switched and changed things around to no prevail. I also had developed some redness in the areas. I then gave up for about a week and tried again. This time, no problem. I thought ok, maybe it was due to a flare up or the fibro (I'm learning about this still but my understanding is pain is very off with this disease). So I was able to make for a while, then boom, complications started again. This time I sent a message to my rheumy. She said that it sounds like a pathergy reaction due to BD. I've had bumps after needle draws before but nothing like this. So I'm hoping acupuncture will be OK since I am a lot sicker than I was when I was doing it before. She also said that if I haven't seen a change since starting the Kineret to stop. I see her in a couple of weeks, will then discuss what's next. I'm suppose to be getting Lyrica this week. It's been taking forever to get from the drug company. Don't get me wrong, I'm thankful I can get it for free from them, but months? Come on pick up the pace a little. Just a little. Please.
What else could I possibly blab about? Lots actually, but I will spare you the boring details...or will I? :) No worries, I'm almost done. Since this whole modern medicine isn't helping me like I need it to, I'm going the more traditional route. I'm planning on seeing an herbalist in the next month or two at the most-I will have to pay out of pocket. I figure what can it hurt? People have been using herbs for centuries to treat diseases. Something has to be working right with them.
Instead of writing a quote, there are a couple of things I've run across on the internet that I've taken a fancy to. Oh how true they...Remember February 28th is Rare Disease Day. Please spread the word.
The F word is officially going to be Fibromyalgia now. So from here on out if I reference it, I will say the F word. In regards to the actual F word- Fuck- I will be more than glad to spell that out :) Why? Because I like that word. There's a great documentary on that by the way- it discusses how the word came about, the original meaning, etc. Not what you'd think.
Anyways, back to why I haven't been on here forever. Yea, the longest I've been absent from here actually. Hoping to never do this again. It's not that I haven't wanted to write, I've just been that sick. Then there was the holidays. Who isn't busy around the holidays right? What's happened since then? Way too much as usual. I'm just going to skip around as things come to mind.
I've recently been diagnosed with the F word. It actually came as a surprise at my second pain clinic appointment. The previous week I had been at my rheumy's and had a change in symptoms over the past month (at that time). My rheumy had marked it in my chart that it's fibro, so the pain doctor was like oh, you have fibro too? I was like huh? Nothing like being thrown for a loop. Especially when you've had a long night (we were in the hospital the night before for Jason's grandfather) of barely any sleep. So I emailed my rheumy, she said it is a consideration based on some of my symptoms (this is the short version of her note) The pain clinic doctor then did the official diagnosis at my appointment that day. So here I am with another diagnosis. How do I feel about this? It is what it is. One day at a time.
I've also started seeing a psychologist to deal with loss of my old self. This is never an easy thing regardless of what disease you have. Even life changes not related to an illness. I've talked about this before, so I'm not going to touch too much on it. Hoping she can help me get past the difficulty of it. Is it even possible? Or is it going to be something I deal with the rest of my life or until I get better? I think I've taken this step quicker than most people have. It's a difficult thing to admit you need help with. The reality is with this disease, it is a HUGE change in your life. You may not realize it at first, but as you get sicker and sicker (as most of us do) there just comes a time when you realize it's not going away and this is your life. It's not that you should accept defeat, defeat is different than accepting your situation has changed. It's not a giving up because there is always hope, even if it's small. It's just accepting. I've started reading a book about another's struggle with getting sick, it's called: How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. I'm only about two chapters in but so far it's kept my interest. Plus 5 stars on Amazon- how many books get that?
Pain clinic update? Sure why not. I'm settling in to this pain clinic. They aren't the warmest but hoping with time that will get better. I should say the doctor isn't the warmest but I try to think of all the shit she has to deal with from patients. It always amazes me the variety of people I see there- young, middle-aged, old, male, female, pregnant ladies, etc. It's always a reminder that you never know what someone else is going through, so don't judge. And most of these people do not look sick. I've started doing biofeedback therapy, which I can't recall if I've talked about before. It's basically meditating to help relax you and get rid of the pain. It's trying to get your autonomic nervous system to take over. It's a lot like doing deep breathing exercises in yoga but add guided imagery to it. I like it a lot but the problem I'm having is 1) being able to keep being that relaxed all day long just isn't happening. It's great when I do it but once I'm out of that trace like state, well it's just not the same. 2) if I'm sick or in excruciating pain that day I cannot get into it. Maybe practice will make perfect? Who knows. If any of you are interested trying some exercises, here is a link ( I am in no way endorsing Kaiser P. as I've heard they are not that great when it comes to health care from friends and doctors I have worked with):
https://healthy.kaiserpermanente.org/health/care/!ut/p/c4/FcpBCsMgEEDRs-QAwyAkOnYXor1Ca3eDGVIhahCbXr8Nf_f4-MJ_hc-0cU-18I5PDFFKl3bjz5oqnGmVio_rOxpvmTGUCpHjWy7j1lPcBYPz1iyT86Ct1qCUVzDb0QERTUYZM95pwSNn-s7D8AN76O4U/
At biofeedback, Cindy (the biofeedback lady) had mentioned acupuncture. I told her I tried it in the past but it never helped with pain/headaches but I did get very relaxed from it. She suggested I should give it a try again if nothing else it will help to relax. Maybe with another diagnosis they can target my symptoms better.
The eyes are up next. I've started seeing an ophthalmologist instead of a optometrist at the recommendation of a friend who had complications with her eyes from this disease. For those of you who do not know the difference, an ophthalmologist is an actual medical doctor. This is critical for those of us with BD. I am very happy I switched to seeing him. I learned that my tear film is not working correctly resulting in some of the symptoms I'm having. He explained it as normal people have what looks like a lake, where mine are like a shallow lake. He says this is very common in people with autoimmune disorders. I am trialing a preservative free eye drop called Oasis for a month. If this doesn't work for some reason, then I can either try Restasis or get an implanted plug to help the problem. I'm hoping this works as I'm not too keen on an implant or a new medication. Why? My body doesn't tolerate procedures or anything invading it and given my track record with medications, I don't want to add another allergy/intolerance to my insanely growing list. In fact at the eye doctor, the nurse said I have the most allergies she's ever seen and it just might be a record. I wanted to tell her about a patient I had once who had something like 33 allergies. If I ever get close to that, I just may call Guinness Book of World Records...
What about my new injectable med called Kineret? I did OK with it for a while. Then out of nowhere I developed some odd symptoms. By odd I mean any needle stick hurt like a motherf#@%$#, I couldn't even get to injecting b/c everything was amplified by 100%. No joke. At first I thought it was because I hit scar tissue, then thought perhaps a bad needle or the injection site itself, or the lot of medication, so I switched and changed things around to no prevail. I also had developed some redness in the areas. I then gave up for about a week and tried again. This time, no problem. I thought ok, maybe it was due to a flare up or the fibro (I'm learning about this still but my understanding is pain is very off with this disease). So I was able to make for a while, then boom, complications started again. This time I sent a message to my rheumy. She said that it sounds like a pathergy reaction due to BD. I've had bumps after needle draws before but nothing like this. So I'm hoping acupuncture will be OK since I am a lot sicker than I was when I was doing it before. She also said that if I haven't seen a change since starting the Kineret to stop. I see her in a couple of weeks, will then discuss what's next. I'm suppose to be getting Lyrica this week. It's been taking forever to get from the drug company. Don't get me wrong, I'm thankful I can get it for free from them, but months? Come on pick up the pace a little. Just a little. Please.
What else could I possibly blab about? Lots actually, but I will spare you the boring details...or will I? :) No worries, I'm almost done. Since this whole modern medicine isn't helping me like I need it to, I'm going the more traditional route. I'm planning on seeing an herbalist in the next month or two at the most-I will have to pay out of pocket. I figure what can it hurt? People have been using herbs for centuries to treat diseases. Something has to be working right with them.
Instead of writing a quote, there are a couple of things I've run across on the internet that I've taken a fancy to. Oh how true they...Remember February 28th is Rare Disease Day. Please spread the word.
Sunday, November 18, 2012
Quick Update and They Joys of Being Sick...
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
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
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
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