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I’m Still Standin’…

Sometimes the oddest songs pop into my head! I can thank Sir Elton John for that one, but I’m not sure I can say that it completely applies to my current situation.. sigh.
I suppose I “am” still standing. Well, wait..I guess I am perhaps better than I was yesterday, or maybe even the day before that. Definitely not “better than I’ve ever been”, as the song says, though.
Definitely better than two weeks ago, however.
This isn’t going to be a Behcet’s entry. My life came to a grinding halt a couple of weeks ago, and I wasn’t sure for a few moments if it was ever going to restart, much like your car battery before you use those jumper cables. In that brief moment before the sparks fly, from one battery to the other, bringing it life, I wasn’t sure if mine was going to continue, and if it did, if it would ever be the same again.
I should back up. My son had been having a difficult time lately. That’s putting it mildly. My son has been having one helluva bad year in school, had a horrific summer, and things just weren’t getting better. He felt overwhelmed. He felt unimportant. He loves everyone. He puts others’ feelings before his own, including their pain. He felt that he couldn’t fix me, and the fact that I wasn’t getting better made things worse. School wasn’t going well, there were bullying issues.
Two weeks ago, my 13 yr old son tried to take his own life. He thought he’d succeeded, until he woke up the next morning. He worried so much about how it would afffect me knowing what had happened, that he tried to wait until he saw his family therapist. He knew she would have to tell us since it involved safety.
He couldn’t wait, and in a conversation, he confessed what happened to me forty eight hours after the fact, and then told me that he still felt like it was the best plan. While I tried to continue breathing, tried to look outwardly calm, we talked about what led to that happening, what he was feeling, and what we felt needed to happen.
He spent ten days in the adolescent ward of the psychiatric ward of a hospital near us. I know that he received much needed help. I will be eternally grateful that God had future plans for my son that involved him remaining here with me awhile longer with me.
This has happened amidst all the news stories about what people are referring to as an epidemic of children committing suicide as a result of bullying. Bullying was not the single reason that my son reached the point that he did, but it played an enormous part. Bullying is also playing a huge part in my son being anxious about returning to school on Monday. He worries about being “that” kid. The one that went to the hospital. More material for bullying.
I am here to tell you that I won’t stand for it. This experience has changed me. I believe that things happen for a reason. Always. My son has been given a second life. Other children haven’t been given this, and I don’t believe for a second that those children were less deserving. There are children dying at the hands of their peers before they have a chance to live!!!
Please, read the articles on CNN, your local news, wherever you read your news. Verizon has an excellent piece with links and videos about texting and bullying. Until we, as adults, realize that this is a huge problem, and take steps to stop the problem, it won’t stop.

This problem won’t begin to change until we, as a nation, recognize that it’s more than just a problem.  Yes, it’s huge.  It will take huge steps on our part to change it.  It will take courage.  Courage on our parts as adults with or without children.  Courage that will trickle down to the children and empower them.  We must empower ourselves, and the children, and let others know that we won’t stand for others taking our power anymore.  We must take BACK our power to be ourselves, free to be different, without fear of being tortured by others.

Please, join me.  Let’s all be able to say “I’m Still Standin’” together!

So…it’s been a little while. Ok, it’s been a long while. I started a blog, and then I’m not sure what happened. The days began to run together, if you want to know the truth. Spring didn’t bring things that I imagine when I think of Spring. When I think Spring, I think about things like; renewal, new beginnings, fresh starts. Spring for me was a gigantic blur. One big, gigantic flare, if you really want the down and dirty, folks. Spring was a time of juggling medicines to see which one would be the “one”.. which combo would be the magic “blend”, so to speak. None of that happened. After months and months of trying different medicines with no improvement, I am at a junction. It is time to think about more serious decisions abut medicines.
The next step in treatment would involve taking medicines that suppress my immune system. This isn’t a decision I take lightly. I suppose it’s obvious I don’t take it lightly, given that I’ve spent the previous eight months trying everything else under the sun before reaching the point I’m at right now. The ulcers aren’t under control, my fevers aren’t under control, the joint pain isn’t under control. The asthma isn’t under control. My fatigue level is at its lowest point since last fall, just before I stopped teaching.
I believe that I’ve been putting off the inevitable. This is no way to live. Sure, I can tell people that my joints feel much better some days. Of course they do, if I don’t leave the house for a week or so, and take frequent naps! My asthma sounds better as well, if I make sure not to stick my head out the door for 8-10 days before you ask me! Migraines, you ask? Nope, not nearly as many! Not many at all, so long as I keep the curtains pulled, and stay in bed when the sun is out! This isn’t the way I want to spend my life, and I’m certainly not giving Behcet’s a run for it’s money. I’m basically letting Behcet’s kick my ass. OK.. I said it. Behcet’s is kicking my ass. Current score: Behcet’s 1, Me 0. Wow. Just, wow. I’m writing things that I’m not even sure I was willing to admit to myself yet. I’m guessing I should’ve returned to my blog sooner, eh?
Ok, Annie.. you’re responsible for this. You, my new friend, were the kick in the pants I needed. I’m done being kicked around by Behcet’s. I’ve been researching immunosuppressents, and this stuff is goin’ DOWN. Me, my research, and the doctor.
Behcet’s… you can suck it.

Tonsillitis, bronchitis, laryngitis, strep throat, pneumonia, ear infections, just to name a few.  I don’t remember a time when I wasn’t sick.  Holidays, breaks from school, any special day warranted me coming down with something.  No kidding.  I would find out later that all of this was related to Behcet’s.  It was the disease and its effect on my young body.  Stress for a child is different.  Stress can even come from excitement at that age; hence the sickness on holidays.  My body was setting a pattern that would continue until the present;  go until you can’t go anymore, and then shut down. 

I continued this pattern through middle school and high school.  In college, I would get sick after major tests, during school breaks, and then weekends as the semesters came to a close.  As I got older, the periods of time before I crashed became shorter.  I blamed it on stress, being tired, run down, blah, blah.  I’d go to bed for a few days, get back up and keep moving.   I never saw a doctor during any of these years for the crashes, because I assumed everyone else went through the same thing.

A Quick Lesson

     Behcet’s Disease is categorized as an autoimmune disease.  Autoimmune diseases, long story short, cause your body to react to things that “should” be there, as things that “should not” be there.  Your body thinks you’re sick, when you’re not.  Your body, in response to this decision, attacks your healthy organs.  Different autoimmune diseases cause different things to happen inside the body.  Behcet’s involves inflammation of the blood vessels, both large and small.  My doctor describes it as “your body is reacting as if it has a million little paper cuts inside”.  Lovely, eh?  Nice visual, truly.  Because the blood vessels are affected, several body systems can be affected.  In my case, so far my lungs, heart, and gastrointestinal system are mostly affected.  I have a rapid heart rate, which if left uncontrolled, causes the muscles in my heart to swell.  I have developed asthma.  I have gastrointestinal issues.  I think I’ll just leave that last statement as is, and not add more. 

      There are a few other features that make Behcet’s different from the other AI diseases.  It causes low grade fevers to be present often.  It affects the skin, in the form of ulcers, and canker sores in the mouth.  You can develop ulcers in your eyes.  You also can develop  ulcers, sores, and other various unmentionable horrors in your nether regions.  Again, I think I’ll leave that last statement alone, and not elaborate.   It also affects the joints, resulting in pain not unlike arthritis, but thankfully without joint damage.  Fatigue is a large part of Behcet’s, as are also migraines (inflammation of blood vessels, again).

     Treatment is all symptomatic, meaning that there is no cure, only treatment to alleviate the symptoms.  This is tricky, however, because many of the medicines used to alleviate the symptoms also cause gastric distress to an already fragile stomach.  The most widely recommended treatment during what is considered a flare is rest.  Sleep.  Good old fashioned shut eye.  Not quite so easily accomplished as it sounds, in a society ruled by routine and schedules. 

     Behcet’s is extremely rare, especially in the United States.  Here, it occurs in an average of 1 per 1 milion people. Needless to say,  that’s not a huge number of people to start a support group with.  In the United States, it is more prevalent in women, than men.  It occurs much more often in what are referred to as the “Silk Road”  countries of the Middle East.  In those countries, it occurs more often in men than in women.  I’ve read all the statistics for other countries, and for my own, and have pretty much come to a conclusion:  I’m not likely to be in the same room with anyone any time soon who has Behcet’s.  Believe me, I don’t feel special knowing this.   I would love to have people with whom to talk to, compare notes with, share stories.  I would feel a lot less alone in this journey, I believe.

Hear the echo…

“I have Behcet’s Disease”.  The moment I utter that statement, you can hear the echo.  The echo of silence.  Silence because people don’t know what to say, they’ve never heard of it, they’re not sure what it is even if you give a brief explanation.  Type “Behcet’s Disease” into a search engine.  You will again, hear the echo.  There is very little information about it, and after the first three or four clicks, you realize you’re reading the same thing over and over again. 

This blog is my attempt to deal with my diagnosis.  It is my journal in which I look back at my life, and document the episodes that I now know were Behcet’s, because I’ve had this my whole life.  It is my hope that in time I will find a new normal in my life.  Right now that’s not happening.  Even though I know I’ve had this my entire life, it’s not making it any easier to deal with.  Knowing that it’s chronic, not life threatening, isn’t making it any easier, either.  Hopefully having a place to let my thoughts go where they wish, will help.  It is also my hope that along the way someone, somewhere, somehow, might benefit from what I learn as I go. 

This is my story.

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