Monday, July 28, 2008

My Medical Mystery Tour, Part One

To the 27 people left in the world who HAVEN'T heard me gripe about some, if not all, my various and sundry maladies, I dedicate this post. If you don't want to know about all the gory details of my medical history, you may want to skip this post and instead check out all the latest cool, orthopedically friendly shoes that Merrell has to offer this season.

These past seven years have been a whirlwind of medical mis-adventures for me, some more exciting than others, with the end result being that I STILL don't really know what is wrong with me.
The way I am today, the choices I have made in how I live my life, my relationships with my friend and family, have all been affected by these events.

For those daring, never-say-die folks, willing to plunge into the quagmire of my health-challenged history, here is a quick recap of all the conditions I've been treated for over the past 7 years:

#1. Undifferentiated Connective Tissue Disease:

This is the BIG one- the one that started it all.

My first rheumatologist hit me with that diagnosis on the Wednesday before Turkey day waaaay back in 2001. Very scary sounding when I first heard it, but over the years I've had some amusement in throwing that one out to unsuspecting medical practitioners. It isn't even in Wikipedia or Google-I just checked.

What it means is that "they" gave a name to a condition that doesn't fall into any of the other known connective tissue diseases. It's a catch-all fancy schmancy official sounding medical term that doctor's can lay on you when they can't give you a real fancy schmancy official sounding medical term for your condition.
My rheumie skated over that fact by telling me that since MY UCTD was acting like Rheumatoid Arthritis at the moment that he would treat it like RA from that day forward, forever and ever after. And BAM...there I was, no longer just a normal, regular person, I was now a person with "RA".

And boy was I.

I got that monster under control about 2 years later. It took a lot of trial and error with boodles of really potent and scary medications, many of which caused me throw up, lose my hair, get really bad sunburns, or all three at the same time. At the time, though, I didn't really have many other options, I couldn't function as I was. And when it was FINALLY under control, I felt great. I felt normal. I felt like a person who did not have RA.

But I did have it, or something related to it that hadn't 'differentiated' itself yet.

I looked like a perfectly healthy, normal person on the outside, I even felt normal, mostly. I started working out at the gym, I was in great shape, I felt great, I felt lucky that I had faced this monster and survived, coming out stronger on the other side, victory! I felt empowered, but...

My doctors, all the pills I took twice daily, the twice weekly injections, frequently reminded me...it was there all the time, lying in wait to pounce whenever something out of the ordinary blipped on my radar screen. I had a label then, I had 'RA'. And usually the doctors used that label to excuse other problems that I brought to them. Problems like...

2. Insomnia:

This was a fun one to experience with a toddler and a full time job. As exhausted as I was all day long fighting off my own body's immune system, I couldn't sleep the night through. (This may have been exacerbated a teeny, tiny bit with having my child not sleep through the night until he was three, but even when he did sleep all glorious night long, I couldn't consistently get a good night's sleep.) Not even with Darvoset or Tylenol 3 with codeine or Benedryl.

Insomnia is not a new demon for me, I've battled with it since childhood. When you have a chronic condition, with side effects of crushing fatique, though, it takes on a new meaning. For anyone suffering from insomnia and sleep deprivation along with chronic pain (and a cranky child), the desperation that comes with it is indescribable. What wouldn't you do for a good night's sleep? The doctors I saw usually dismissed my complaints of fatigue and inability to sleep through the night, as something that wasn't really that important (considering I had RA) I'm not really sure why. And not wanting to be a pain or a nuisance, I trusted that they knew what was best for me. Can you believe I waited 5 years before I finally asked a doctor to give me a sleep aid so I could get a full night's sleep, I just couldn't take it anymore. And that led to....

3. Depression and Anxiety:
hmmmm... that's a shocker!

Now we fall into the chicken and the egg riddle. Which came first? So many studies out there that show insomnia tied to chronic pain-chronic pain tied to depression-depression tied to insomnia. It's a vicious cycle. Treat one and you'll treat them all!
Or as it happened in my case, treat them all, and you'll treat none. The docs just kept piling on the meds. But I jumped on the Prozac bandwagon nonetheless...how could I refuse a treatment that might bring me some relief? I whispered the name to only my closest confidants. In addition to being an RA patient, now I was also officially someone with a mental disorder...


whew! Are we having fun yet? I sure wasn't. Chronic disease and mental deficiencies. And I wasn't even 33 yet. Not exactly the way I'd envisioned my life up to that point.

I did say this would be quick-right? HA! well, I lied...and there is more, I'm really just getting started on this trip....but....

I think I need to take a little mental health break and play with my new, cute, demon kitten, Oscar. They say pets help to ease anxiety and tension in people...


ahhh! that's better now, isn't it? Let's just call it a night, shall we?

2 comments:

charlotte Mayhew said...

I empathize. No, really I do. Take care and trust your gut instinct on your own health care. Take notes! Eventually, you will sort it all out. :)

Dirtbikes and Divas said...

Okay, so I'm new to your blog and I don't know if you will even go this far back to notice I posted but I know what's wrong with you....and the good news is the diagnosis is FREE!! :) I too, over the years have suffered from so many symptoms and none of them went with anything one specific diagnosis. I finally found a doctor that diagnosed me with Candida Albicans!! There are MANY webistes that address it but I will tell you you should definately look into it!! I hope you feel better soon!! I know how frustrating it is to have symptoms and to be labeled "hypochondriac" or "horomonal woman"!! Good luck!

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