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:)
So very glad I found your blog and this post in particular.
ReplyDeleteI just developed Erythema Nodosum on my legs (knee to toes, both legs) mid-August, thought it was an isolated incident, lo and behold they returned a week ago (Oct. 5) with such severity I could barely walk, my legs swollen horrendously, especially around my ankle on my left leg.
In getting this symptom diagnosed as E.Nodosum, this 'confirmed' for me that I should be tested for Behçet's Disease.
I post here because I've had Geographic Tongue since as long as I can remember. I was very young when a dentist pointed it out to my mother. Also, the horrible mouth ulcers... I get several at once, that get so big at times that they leave scars behind.
I also was operated on in 2004/2005 for severe endometriosis.
I suffer from headaches/migraines that continue for days and days that no medication can seemingly resolve, even ER IV medications for migraines. Often I wake up with a left side headache. My headaches/migraines can be vicious. I have aura and "Alice in Wonderland" syndrome with mine.
Long story short, I'm very relieved to read another who has Geographic Tongue and BD. I could not tell you if I have BD for sure - still need to go to see the rheumy - and to complicate matters, I do know that I have Multiple Sclerosis (diagnosed in March, 2008) which could have been symptoms or 1 or both diseases. Know what I mean?
I read a lot of your posts - medications. Oh my gosh. I am weening off Topamax right now - horrible stuff. Low BP (80/50 ... not sure if this reading/number is different in the USA, I'm in Canada), cloudy urine, major cognitive, word recall difficulties, mood swings.. I could go on and on. I can't do anti depressants or anti convulsants. I've reacted on all of them. The only 2 medications I take regularly for pain are clonazepam (klonopin) very low dose (I have another lovely condition, burning mouth syndrome, not sure what I can thank for this one, but I've had it since June 2007), and nabilone (used to be called Cesamet before going generic) for neuralgia on the left side of my head. I've had a lot of issues specifically with my left side.
Thanks again for the post and info in your blog. I'll keep reading as you keep posting, because it's wonderful in the 'limbo' period to find another who can confirm some of my 'suspicions' to address with my doctors.
Laura xoxo
I can't believe I haven't found this blog before. I have had behcets for a couple years. I looked for support groups for months. I never found this page. It it very early 4:14AM in PA. I was sitting here because surprise surprise, my entire body is aching. My doctors were trying to blow off this pain as fibromyalgia and saying I have to learn to live with it. I know think maybe it's the behcets. I'm also up because my mouth hurts with ulcers on the side of my tongue and one on my cheek. Also, that picture of your tongue looks like I took that picture of mine. I have had this for months. My primary doctor thought I had thrush because my tongue was so white but with strange red cutouts. And it's painful. My name is Lorraine and I'm a biology teacher in Pennsylvania. Also, I had extreme headaches everyday for over a year. I finally got a doctor at UPMC to take me seriously and I did get the BOTOX injections. I have had them 2 times and I rarely get headaches anymore. And when I do, they are much less painful and don't last all day like before. I have had zero reactions to the botox and most people don't. Siting here saying most people don't...that is what I have been told all of my life. Most people don't need their gallbladder removed at 13. Most people don't have 5 autoimmune diseases. Crohn's, Behcet's, Interstitial cystitis, Chronic Lyme Arthritis, and Endometriosis. Most people at the age of 26 feel like getting out of bed is a huge challenge. Let alone work, take care of my husband who was in a bad accident and has had 2 different foot surgeries to repair damage. I really would like to get involved on this blog. I know I have been fighting with my family because they just don't understand. My husband has the crohns but that on top of the behcets is usually unbearable an they don't understand why I'm always sleeping and not wanting to do too much because you never know the limit you can do before the unbearable pain will force you to either take narcotics or crawl into bed and want to cry. Please if you or anyone on this blog have any suggestions for my life in general or suggestions I can take to my doctor, I would greatly appreciate it.
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