What the heck????

When I started on the magic meds, the new doc also gave me something to help me sleep. It's a famous brand name! It's the drug of choice for a common problem: Lack of sleep. Lack of sleep will make you hurt, it will make you fall asleep or be exhausted during the day, it will make you testy, it will make you crazy. So obviously, you need sleep! But then...what if the little sleepy-time pill not only stops working after a week or so, but it makes you dizzy during the day? The room starts spinning so much, you feel as if you cannot hold your head straight up because you are swirling like that carnival booth where you squirt paint over a paper on a turntable. Sure, it makes pretty colors and cool patterns, but you don't want to actually RIDE on that spinner.
   The other symptoms start appearing, you start thinking you are crazy. (Well, if the strait-jacket fits...) You cannot think of simple words. You are trying to remember an object's name. You ask your husband to hand you that, that THING, as you point to a cup or a spoon. You have no idea what the word is. You write a note to someone then reread it and it is essentially gibberish.
Dear So-So,
Congratulations on your little bunghole of joy.

This REALLY happened before! Of course I meant BUNDLE!!!! What is happening??????? (worse yet, you have no idea what the person's name is you are writing to, and you go through your address book laboriously for a clue. ) Calm down, deep breath. Let's figure this out. I'm just tired. Of course, that's it! That's all! Why is the room going round and round???? Why are there bugs attacking me on the right? (They aren't, you just think they are there, eating you like midges on a summer's day)
Hmm, maybe I should call the doctor?
So I call the doctor and the doctor says: No more monkeys jumping on the bed. Just kidding! No the doctor says STOP THE MEDS NOW.
Okey dokey. Withdrawal time! Are you kidding me???? Not only are you having side effects from the drug, you are now having symptoms from stopping them.
Sleep will not come.
Wide awake.
10 games of Scrabble on the Kindle.
HA. I won! HA. How come it keeps rejecting perfectly good words like shambula (50 bonus points!)Sorry no such word., Please try again. Err, how about Bulasham? Same thing. It's not a word. Even my stupid Kindle knows how to spell better than I.
Sleep. Must sleep.
(My cousin mentioned that when she cannot sleep she thinks of poor Michael Jackson who tried drug after drug to sleep, finally succumbing to the nightmarish mixture of hellish drugs. I am not so judgmental of him now...)

I need sleep. Desperately. I literally have not slept more than 4 hours a night in years, except for that first week or so of the sleepy-time pill. And now...it is bye-bye.And I want to go night-night.
It is Halloween. I am going to be a ZOMBIE. I will not need special make up! Woo-hoo!

If Only....

   If only, if only...

1) Meds prescribed helped and didn't do another type of harm
 

2) Meds did not have awful side effects that somehow made you wonder if the cure was worse than the ailment (hmm, that might be the same thing)
 
3)  Life were "fair". Whatever THAT means.

4) People could understand that when you break down and cry over stupid things, it's not the stupid thing you are crying over.

5) When the storms come, you try and remember it is temporary. Even though that storm can do a lot of damage at the time, it helps to remember that "This too shall pass." 

6) You can keep in mind that there are many who are worse off than you. It is NOT all about you.

7)  The pain would go away.

8) You can remain upbeat in spite of the pain that won't go away.

9) When you look in the mirror you can see a smile instead of a sad face.

10) Those idiot brain doctors would read their journals so they could keep up with disorders that were identified nearly 100 years ago even if they are "rare". Think outside the box, Dox. (Especially the rheumatologist who should have known better back in 2003 when my symptoms were so horrible, and it was the perfect storm of symptoms that looking back, should have been identified.)

Magic Mouthwash

   Have you ever had a canker sore? Bad sore throat or had braces that cut your mouth? Have you ever had the "Magic Mouthwash" that was compounded by a pharmacist to alleviate the pain?
Well, I have used it in the past when I had painful sores in my mouth that I now know was caused by Behcet's. Now, I have them nearly everyday. (Happily, they seem smaller since starting my meds) This morning, I got up and yippee! No sores! That was this morning. Right after dinner I decided to take a few minutes to get caught up the news and update my blogs. As I am sitting here, I realize that I have a huge lesion on my tongue. I cannot believe it! Although I am NOT going to blog a picture of my tongue like some bloggers have, please believe me when I tell you I am sorely disappointed. Pun intended. I had such high hopes to be lesion free. Ahh, maybe tomorrow. Anyway, back to the Mouthwash: Homemade recipe: 1 part Milk of Magnesia, 2 parts children's Benadryl, a bit of water to thin it out, shake it up (really all you need is about a tablespoon total) and swish that stuff in your mouth and it really helps. Don't swallow it for crying out loud! You'll fall asleep in front of the TV!
I chose the minty flavor. Mixed with the cherry? flavor of Benadryl, it's sort of bubble-gummy.

Now for something completely different and bizarre. I laughed so much, I almost bust a gut.
Sitting at the eye-doc today waiting for my son, I overheard three women talking. Two were employees (one in her 30's who looks very "goth", the other perhaps in her 40's). One was an elderly (perhaps 80's?) woman with purple hair. Flaming purple hair, not the old-lady purple that is a "rinse" for gray hair that gives a lavender hue. They were talking variously politics, condos, as in getting someone to do your yard work with HOA fees, and dating...sex in particular. The elderly woman was going on and on how she enjoyed living alone and not worrying about having a man underfoot. She said (and I quote!) "I wasn't interested much in dating until I was 79. I had a lot of men, some were good in...(eww file this under TMI) and some were not. " Okay, you get the gist. It was making my head hurt because it was so graphic, yet hysterical. Then the 30's something Goth Girl said " Well, my aunt is elderly and I can't believe she is so interested in men! Honestly, I have to fight her for certain guys she flirts with that I want! And she is 57!!!!" I almost puked! When did elderly become 50's?
Honey, you ain't seen nothing yet!  The whole conversation made me laugh. A bright spot in my craptastic week.

Obla-Dee Obla-Dah, Life goes on...

I am sinking into a pit, a pit of pity. My lips are swollen (good news: saves on collagen injections!) and I have multiple lesions on my lips and gums, but again, good news is they are smaller than they have been in the past. I have discovered two very good blogs about Behcet's. One is called Behcet's Land and it is written by a young woman, only 22 who has Behcet's. Her blog link is:  http://behcetsland.blogspot.com/
   Another is written by a young woman in her thirties who has quite the harrowing tales to tell, mainly about mistreatment by various physicians, medical personnel, and even the DMV when she went to get a disabled parking pass! It is a horror story! In the second one, Chrissy (the writer) has an excellent blog entry about what a flare-up is like. I felt like I was reading my own diary. If you are interested in reading about it, it is in her April blog posting. Her link is this:http://livingwithbehcets.blogspot.com/2012_10_01_archive.html
 There are more blogs than I thought possible, but another one is written by a woman named Joanne Zeis. She seems to be quite the activist and is very knowledgeable. Although a "lay" person, she has been featured on Discovery Health channel and written books about Behcet's. She has been a good source of info as she has quite a few links on her blog with reputable people. If you would like to watch the video from DH, there is a link on her blog: http://behcets.blogspot.com/

One of the things I have noticed that is a commonality of Behcet's sufferers is the mentioning of horrid feeling of heat coming over your entire body. One man described it as feeling like his "blood was boiling". What an apt description. I will have 20-30 incidents per day when it feels like I am heating up from the top of my head down my whole body. I tried to describe it to the snotty rheumatologist in June, but I most likely made it sound like a hot flash, but tried in vain to let her know it wasn't. But of course she didn't listen. None of the symptoms listed on different sites describe this odd phenomenon, but so many sufferers do, so it must be a "thing". Let me tell you, it is one of the more wretched things I have ever felt. During the day when it happens, you feel as if you are going to pass out. During the night when it happens, you feel as if you drenched in sweat and throw the blankets off, but there is no sweat...It's a dry heat haha, like being in an oven and you are the main course. Or maybe Death Valley. Whatever it is, I hate it. But hey, menopausal women suffer with this daily, right? and they don't whine...or do they?????

Win some, lose some.

Dang dang dang. Woke up today with mouth lesions. I knew yesterday one was starting. They start off as little bump-like things. tender but not really painful. Usually in the next day or two, they break open and turn into open lesions. I have four distinct new ones in various stages.
   But I am looking at the bright side! They are smaller than they normally get! I can have them varying in size from a pencil dot to a pencil eraser size. These seem to be pencil point size (if you wrote hard and pressed down on your paper)
   I went to the dermatologist y'day and he looked at my lesions that are healing on my head. All good, no new ones (knock on scalp) He did take a biopsy from my arm as I have strange brown patches there that cove my whole forearm (they get quite dark in the sun) and now I have patches all over my neck. These are new. He is trying to determine if they are Behcet's related or medication related or I don't wash my neck haha. I don't think the arm patches are medication related as I have had them for many years, but the neck patches are new. They use that black light to peer at your skin to get a better look. I was going to ask if I could borrow it for a cool Halloween decoration, but I am guessing it is too expensive to loan out. I think I will dress up this year as a Zombie. I am beginning to look (and feel) like one. 
   I want to point out that this not an actual picture of me, but it might be close.  I think the curlers are a nice touch!

Breath Taking

   The word breathtaking usually means something amazing, wonderful, terrific. In this context however, breath taking means it felt as if my breath was sucked right out of me. I went to the new rheumatologist a few days ago. First off, we liked her instantly. She took the time to listen, really listen to me and my concerns. She also read at least 100 hundred pages of all the faxed reports from various doctors. She did a physical exam (the last rheumatologist in June glanced at my hands in lieu of a physical exam. ) She asked me multiple questions and seemed genuinely interested in me. And hey BONUS: she didn't roll her eyes one time at me.
   The presumed diagnosis is Behcet's Disease. Even though it was expected more or less, it still felt as if my heart skipped a beat. By presumed I mean that it is almost impossible to diagnose. It is a disease that is essentially diagnosed symptomatically. Looking at each symptom singularly they are almost meaningless. Putting them all together, they equal Behcet's, a rare (in America) disease. She started me on a medicine that is usually used on gout patients. Now, here comes the coolest part.
   Within one day (ONE!) my lesions were healed over in my mouth. By Day three, my lesions on my scalp were healing over. By today, Day five, I could not even find a scab on my scalp.
   There seems to be a tiny side effect. I have noticed bruising in my ankles, calves, and shins. I looked up the side effects and of course it said, call a doctor immediately if you notice unusual bruising. Okey dokey, I am a teensy bit concerned. They seem small, not big giant and scary bruises, but I will give the doc a quick call tomorrow. My fear? Take me off the miracle meds that are healing my lesions but making me sick. Wouldn't that just be my luck?
   All in all, I have to say I am so happy to have a diagnosis, we can work with that. I do believe having a diagnosis is better than the not knowing. Even if the answer is frightening, I feel vindicated. You know that funny tombstone saying "I told you I was sick!" ? That's how I feel. I've been telling doctors for the last 20 years that something was wrong and they wrote me off every time, even telling me I was depressed so I was sick. One doctor told me I was sick because I was "fat and didn't exercise."  So I lost weight, started exercising, and still I was sick.
   The good news is that psycho doctor got me to do that (diet/exercise) even though it hurt badly to hear someone be so cruel. That was 16 years and 140 lbs ago. Gee, I wish I could find her again so I could say "thank you!" and then punch her lights out. (sort of kidding)

A gut feeling

   Where we left off: It was in June that I was kicked to the curb by the rheumatologist. The one I used to trust when I got my arthritis diagnosis.
All summer long, I just felt so exhausted. I felt like I had the flu. Some days I was so exhausted, I didn't want to get up. Every muscle in my body ached. Oh I had some good days, but mostly there were the "meh" days: Not good, but functioning.
In September, I had a bizarre thing happen. I won't go into a lot of detail, but I developed lesions on my body, unbeknownst to me, but spotted by an alert nurse practitioner. She decided to culture them, even though she felt is was viral (as in shingles)
   Imagine her surprise (and mine) when they came back negative for viral or bacterial. They were just "there". I spoke to a cousin about them and a friend of hers happened to overhear a bit of conversation and described her own personal story of her disease. I called the nurse practitioner back and mentioned this disease to her and she made another appointment for an actual biopsy (as opposed to a scraping for a culture)
   By the time I got to her the following Tuesday (I had made the appt on Friday) I was violently ill. Again, I will spare you the details, but this really was horrible, like a noro-virus of some sort or food poisoning. She said we could hold off on the biopsy. HA. If I am going to be miserable, I might as well be really miserable.
   While there, we discussed the possibility of the disease that the friend had mentioned. The NP did not feel it was that, however, it got her thinking. She had a gut feeling that it was a disease called variously Behcet's Syndrome or Behcet's Disease. (pronounced Bay-Shet's after the doctor who discovered it) I had never heard of it, but you can bet by the end of the day, I would know about as much as can be known. I looked up every website imaginable. In short, it is a very common disease in the Middle East, Japan, and Asia where it affects more men. In the US, where it is extremely rare, it affects more women. It is an auto-immune disorder caused by vasculitis. (an inflammation of any number or type of veins) After reading about it, I fit nearly all the criteria, which was frightening.       
   What was even more frightening was that I had had these symptoms since I was a child. It explained so much of not only why I was currently so sick (quite possibly a flare-up) but why I had the arthritis diagnosis those many years ago. When the biopsy results came back, she was happy to tell me it wasn't cancer, but the report seemed to be consistent with Behcet's. I gotta tell you, I was
happier more than I was sad. Was this the answer after all these years? I cannot tell you how many doctors I have seen and not one, not a single solitary one had ever breathed a word of this disease to me until now...and it wasn't even a doctor. It was a nurse practitioner with a gut feeling and the wherewithal to say it aloud. DH was so upset: The rheumatologist I had seen in June had a list of all those symptoms and yet...she said they were meaningless. If a "rheumy" can't figure out an auto-immune disease, who can? To be fair, it takes many years to get a diagnosis: You see one doc for this, another for that and there isn't really a single doc to put it all together...and it is "rare" here. Although this seems bogus to me! If it is rampant in other countries, why aren't these people of that descent affected her in America, the melting pot? Is it because no one is looking for it? What the heck? I find that really hard to believe...surely it isn't as "rare" as "they" say? Stay tuned!

http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260521

Little Orphan Whiney

    This blog has always been about my husband's stroke in April 2012 and how we have coped as a couple and a family since that occurred. I have decided that it will now become more expanded and look at the bigger picture of good/bad health and how it affects our lives, particularly how the traditional medical profession has failed us as human beings. 

    I am not picking on any one doctor, but I think increasing red tape and inability to listen, just LISTEN to patients has created a medical nightmare.  We are now facing a health crisis in our nation, not just the inability to pay, but the inability to get a proper diagnosis and treatment. 

   We are oftentimes at the mercy of drug companies:  What research they choose to fund, what drugs they decide to push and advertise and how things are marketed. Alternative treatments are scoffed at by the mainstream medical profession at large and yet, even when it is a disease or illness that is easily found on the internet(!) a physician with their 15 minutes may miss the aha! moment sending the patient on a roller coaster ride of unnecessary pain and suffering because of a misdiagnosis or a non-diagnosis.

   I have always heard of the word "Orphan Disease" thinking that it meant a disorder that is so unusual and rare that it wasn't worth putting money into the research as it did not affect large groups of people.  I was partly right:

  

Definition of Orphan disease

Orphan disease: A disease that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. An orphan disease may be a rare disease (according to US criteria, a disease that affects fewer than 200,000 people) or a common disease that has been ignored (such as tuberculosis, cholera, typhoid, and malaria) because it is far more prevalent in developing countries than in the developed world.

    So what this means is this: If it doesn't affect Americans, then it isn't worth it. Wow. I was stunned when I read that. 

     I recently became so ill that it was hard to even walk. The exhaustion level and other symptoms manifested were so painful that I just often cried and slept. These are the doctors I saw (or didn't):

   1)My symptoms started flaring up in April. I made an appointment to see my former Rheumatologist: Appointment scheduled for JUNE.

   2) When I saw her in June, I had filled out numerous questionnaires about my symptoms. She rolled her eyes several times at me and said "These symptoms are so diffuse that they are meaningless" and then after rolling her eyes at me several more times and looking at my husband as if to say "Your wife is loony" she said "I suppose I could take some blood." I just said "Don't bother."  And I gathered up my things and left. This was not starting out well. This was a doctor that I had trusted implicitly.         

   Back in March 2003, she diagnosed me with a weird type of arthritis (an auto-immune type, not the osteo type that hits when your joints wear out). At that time I had been to 11 doctors. My hands were gnarled and curled up, I was unable to straighten them or use them to write. Each doctor said the same thing: It is tendonitis. I knew that was wrong. (My internet research led me to her when I thought it was scleroderma) You don't just wake up one morning and have your hands frozen into place. I was lucky to find her. I got treatment, but after several years of poisonous drugs flooding my system, I made the decision to stop drugs, change my diet, exercise, and do acupuncture.               

   Laughingly, my current situation turns out to be related to that first diagnosis. Why she didn't listen to me and treated me so poorly in June is mind-boggling.  So I got worse and worse with more horrible symptoms.

    Stay tuned for more on this continuing saga about what it took to get a diagnosis.