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.

 

Making it all work

   Sometimes I think that I just want to curl up in a little ball and sleep for days. Or at least for a few hours, get up, eat, stretch, lay on the sofa in the sunlight, then go back to sleep. In short, I wanna be a CAT.
   Yes indeedy, they don't have to do a whole lot just sit around and purr. No bills to pay. No campaign rhetoric to listen to. No houses to clean (okay, you still have to groom yourself, I will grant you that.) But you pretty much are just petted, fed, and fawned over. How can you go wrong? I got so incredibly sick this week. Again. I keep thinking, what on earth? Now, if I was a cat, someone would take me to a Vet and he/she would figure it out in no time! But no, I am a human. Whatever should I do?  Here's an idea: Go to the doctor. Warning you don't have to read every one, it just gives an idea how complicated life can be; Stay tuned. This might get good. More on this later in the coming days...

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Magic Moments are Everywhere

   Yesterday was my birthday and I wanted to just hang out and do fun stuff on the weekend. The plan was to go to the movies on Saturday (I know what you're thinking...who is she going to pick a fight with next?) I will get back to that in a second.

 





   Sunday afternoon was reserved for the Veg Fest, a total Vegan/Vegetarian showcase of everything from books/lectures/veggie-friendly pleather shoes and purses/and food...lots of delightfully delish veggie and vegan dishes and treats and samples. It was really great trying some new things and old favorites.
   Since DH is fairly new to the Vegan-ish scene, it was good for him to sample things to see his likes and dislikes. It was really fun and interesting. I think the best part of the whole experience were the people. I remember years ago, vegetarians seemed to be slotted into two categories: Hippies and Seventh Day Adventists (Thank goodness, they have come a long way from pasty yucky greyish things in a can from Loma Linda products, speaking of which, I wonder if they are still around and if they are any better?) Hey just looked them up, they still look a little dicey but their sister site lists Morningstar which is pretty tasty...But I digress.










Any way, what I was going to say was that there were a huge cross section of people: Young, old, pink-haired, gray-haired, punk, business men, African-American, Asian, Sikhs, Muslim, Christian, Jews, probably atheists and agnostics but I didn't ask, gay, straight, and probably closet meat-eaters just to see what all the fuss was. (A survey asked if you were Vegetarian/New/Long-time/Vegan/Curious, that made me laugh. In the Gay world if you're "Bi-Curious", well, I shouldn't have to explain THAT one, but what do you call a part-time Vegetarian? Bi-Carrot? Bi-Broccoli? Bi-Pork? Bi-Beef? How about Veg-Curious? Hahaha. That cracks me up to think about it. Okay, I thought I totally thought that one up, but I decided to plug it into a search engine and a bunch of stuff comes up! Here's a cool website if you are "Veg-Curious"
http://www.nomeatathlete.com/vegetarian-diet-myths/


     Now, back to Saturday and the movie. No, I didn't go looking for a fight. The original plan was to drag DH to a Chick Flick (although I hate that term, it's probably as good a description as any) Then so our son didn't sit home alone all day we thought maybe he could see a movie at the same time that he would prefer. As it turned out, I went to Girl movie alone (my choice!, sort of a birthday gift to my hubby so as not to torture him) and he and our son went to a movie I probably wouldn't go see. Their movie started earlier and as I had some time to kill, I was stopped by a young woman to watch a test trailer and answer some questions about the trailer and how I perceived the movie. As it turned out, the trailer (which I had never seen) was for a movie that I had heard a bit about: Lincoln. (no, not the Vampire movie). This appears to be a dramatic presentation of President Lincoln dealing more in depth into his personal life, his choices that guided him during the horrible period of slavery/Civil War and his family. A lot of "brand" names in the movie and because I am a Lincoln buff, it caught my eye. (It is based on a book called Team of Rivals by one of my favorite authors, who writes a lot about our Presidents and politics.

Doris Kearns Goodwin
  To read about the book, here is a link:

 http://www.amazon.com/Team-Rivals-Political-Abraham-Lincoln/dp/0684824906

     So any way, went to the movie: It was so-so. Mostly women in the audience (big surprise) and yes, before you ask, there were talkers and guffawers but I chose to ignore them haha. But, now this is where the magic moment came in: 
   When the young woman that was asking me questions earlier about my demographics for the movie trailer, I happened to mention that it was my birthday. She wished my a Happy Birthday and she was very sweet. She had asked me what I was seeing and we had made a bit of small talk about the movie. Now this is where it gets good. As I left the movie she was coming towards me down the long hallway (she had her computer/trailer station set up in the lobby) and she was carrying a box. 
   She walked up to me and handed me the box: it was cupcakes that she had purchased from a store outside the theater and on it she wrote Happy Birthday R...! I was absolutely stunned by her kindness and thoughtfulness. In fact, I kind of got choked up. It was more than cake...it was the reminder that there are more, far more, good people in this life than there are bad ones. I will probably never see her again and have no way to let her know what that meant to me. It was just that Magic Moment that we all treasure, but rarely get to experience.  To do that for a stranger was just beyond all words. Thank you Erin! You made the memory of the crazy woman the day before go "Poof!" and disappear....