Pandora’s Box

Pandora's BoxI’ve been promising an update on my health for some time now hopefully this post will satisfy your cravings for all things “health Stina”. To be honest the status of my health seems to be changing faster than I can process and catch up. After having started this post several times over the past several days I’ve decided to simply breeze over as much of it as I can and put some real “meat and potatoes” in along the way. Overall I’ve been battling feelings of anxiety and depression lately, I’m sure this has a lot to do with the fact that I can’t seem to catch a break. Every time I go to the doctor it feels like he hands me Pandora’s box and says, “Have at it lady… oh, and good luck!”  Through the beginning of summer we were pretty occupied with family vacations and fun times with my niece who visited for almost 2 weeks. Now that the fun has subsided I’m left to dwell on what is happening and forced to face the next steps. I try to sound bubbly and happy, I make my feeble attempts at putting on a brave face, but sometimes when people ask how I am I’m sure it is totally awkward when I’m on the verge of tears in an instant. Let me see if I can sum it all up without writing a novel. (I know, hard for me since I can’t seem to keep anything on the short and sweet side!)

A few months ago I posted about being on the hunt for new doctors. One of those hunts was for a new Rheumatologist. I was driving a little over an hour to see my original doc whom I really liked, for the most part. The drive is very difficult for me to make. By the time I get there I’m really stiff and sore from sitting in one position for too long. I’m also being stubborn about the fact that the air-conditioning is out in our van, it’s to the stage in life where you wonder if you ought to just take it out back and put it out of its misery. This means that this 2 hour round trip is made with the windows down in 95 to 102 degree weather. Yah, I’m super cute by the time I get there with my hair blown to bits and the pungent aroma of roses. Come on people, you don’t really think I stink when I sweat do you?!? OK fine, I kind of do… I guess. Anyway, these drives were sending me to the brink on the best of days.

In the mean time I found a Rheumy located a mere 30 min from my home. This was a fantastic find considering I live in a valley virtually devoid of such specialists. This find was my oasis in the hot desert, so to speak. The problem? He was kind of a snot to me at first. Actually, at the risk of sounding like an 11-year-old girl, he was a TOTAL SNOT to me at first. I was willing to put up with his Royal Snotyness because he was willing to dig a little bit deeper than the previous Rheumy. Although in doing so he seemed completely unwilling to acknowledge and treat me for the original reasons I had come to see him. I personally believe he was of the mind that he needed to be the Dr to proclaim, “Aha! I’ve discovered your ailments and shall make you better. You may now kneel and kiss my sir snothood ring in adoration.”

Huh, well you can probably tell that I wasn’t buying it. I patiently endured the barrage of tests he requested. Each new test required a visit to a new specialist and if he, meaning the “snot”, didn’t like what he heard he’d jump to the conclusion that I needed a second opinion. Ugh! Like I don’t see enough doctors, thank you very much! Besides with every new specialist and subsequent test, out comes Pandora’s Box and I start to cringe inside wondering what they will, or won’t find. Sometimes when you suffer from chronic illness NOT finding anything can be almost as stressful as when they do. Let me explain. You know something is wrong, you don’t feel good and yet your body doesn’t want to reveal its secrets. So in this world of western medicine the Dr looks at you like you’re a crazy, self-diagnosing, internet illness trolling, hypochondriac. Sometimes you actually want something strange to show up on the tests because at least that means you know what is wrong and you have a direction in which you can go to fix it.

This round with Pandora’s Box went something like this. I’m having some frustrating neurological symptoms that they can’t seem to account for. He sent me to my neurologist because I’ve had abnormal brain scans in the past. They never could definitively discover why so they keep base-line MRI’s of my brain on file and each year I’m supposed to return to have a follow-up MRI and see if anything has changed. My neurologist said that my MRI didn’t show any significant changes. Apparently, according to him, autoimmune disorders can manifest themselves in funny ways and affect a variety of bodily systems. (I kind of already knew that…) The new Rheumy didn’t agree and wanted a second opinion. I refused saying that I was satisfied with that answer. What more can they do? Look at my brain again? I’ve already had two MRI’s of my brain in the last 6 months. Enough already, my gut feeling is that the answers aren’t there. He didn’t like that.

On to the next conundrum; my sleep, or lack thereof. I haven’t been sleeping well lately; I feel it is due to stress and anxiety brought on by my health concerns. He’s convinced that it is a sleep disorder of some kind and sent a recommendation to my Primary Care Physician that I endure some sleep studies. Luckily my PCP started conservatively with an oximeter test. I just had to wear a device on my finger all night long measuring my oxygen levels. We’re still waiting to go over those results, I’m kind of nervous to open that can of worms. Greg has sleep apnea and I think he is looking forward to proclaiming ourselves Lord and Lady Vader with matching C-PAP machines.

003Next he started questioning my diagnosis of AS (Ankylosing Spondylitis) and RA (Rheumatoid Arthritis). He insisted that the joint pain must all be due to my issues with Crohn’s. Although during that same visit he mentioned that he wasn’t convinced I had Crohn’s either. He didn’t see what happened in the public restroom just outside of his office. Fine, next time I’ll take pictures. I decided to keep an open mind and kept asking if it weren’t those three issues then what did he think they were? He couldn’t give me a straight answer and apparently didn’t like the records he already had from the “far, far, away” Rheumy and the GI who helped diagnose my Crohn’s. He decided I needed to swallow a camera and so sent me to yet a new GI specialist. Here you can see the day I did so becoming a Borg from Star Trek (yes, I’m a nerd… and I love it!) This pill was huge; the bottom half was all white and the top was clear where you could see a little miniature camera in all its glory. I’m not sure what I had expected but the fact that I could make out the lens was a little disturbing to me. I’m sure the pathologists got a chuckle out of the fact that after it was activated and before I swallowed it there are pictures of me sweeping it past each of my boys’ noses. The actual swallowing was accompanied by the “oohs” and “aahs” of my two kids who thought it was the coolest thing they’d ever seen their mother do. That’s sad, how am I ever going to top that?

Well, the results of that test were as inconclusive as all the rest. There’s inflammation but they’re not sure what kind and there didn’t seem to be much at the time of the test. Could it be that I’ve been on heavy doses of Prednisone for months and months now? Um, yeah. When I mentioned this the Dr kind of had an “aha” look come over his face. Seriously people, there are times I wish I could get inside their heads just at the moment when they realize their patient may have actually outsmarted them!

The best part of this latest visit came when the “snot” veneer finally wore off and a really compassionate and caring doctor arrived on the scene. I’m not sure if it was because I was crossing my fingers until they were numb or the fact that I prayed and prayed that I could find a closer doc (probably the latter); but I was telling a friend today that I honestly didn’t know whether to smack him or hug him as he admitted that he too felt I had Crohn’s, RA, and AS. Wow, you don’t say?!? After finally acknowledging my diagnoses he then moved on to providing a treatment plan that I feel really good about. The first step was to get an MRI of my SI joint to see what was inflammation vs. scarring vs. irreversible damage. I went for that image this past Monday morning and the radiologist must have expedited my images to the now “not so snotty” Rheumy because within five hours I had a phone call saying nothing more than that the damage was more extensive than he thought it would be and it was time to visit an orthopedic specialist.

At this point I must tell you there is a giant knot of anxiety that has been sitting in my chest for several weeks now. This, of course, only adds to it as I’m sure you can all imagine that this was not exactly what I wanted to hear. In a sick and twisted way I’m glad they found something that I can sink my teeth into, it would just be nice to know exactly what that something is. Again by sheer answer to prayer and following several nudgings of the spirit today I was able to find a Dr that can see me tomorrow morning. This is good because I’m a very talented “stewer” and I will “stew” and “stew” myself into a right frothy foam if I’m not careful. So the sooner I have answers about these mysterious MRI results, the better. I’m hoping it amounts to cortisone shots and physical therapy and not surgery. Every individual with RA or AS knows that the possibility of joint replacements looms on the horizon, we’re all just trying to stave off the inevitable as long as humanly possible.

The other good thing is that I will finally be starting a drug therapy that should have been done first. The “far, far, away” Rheumy suggested trying it at first but it involves in-patient infusion therapy (meaning administered through an IV) that typically takes 2 ½ hours. He insisted that it must be done in his office which meant that every 6 to 8 weeks I would need to carve out 5 hours to include the drive time back and forth. This new doctor is allowing me to have the treatments done at a nearby hospital infusion center which will cut the time back to 3 ½ hours instead. I’ll take it! It will be rough at first because there are loading doses which means that I need a second dose 2 weeks after the first and a 3rd dose 4 weeks after that before I can go 6 to 8 weeks in between. If I can move past the stress of scheduling this new therapy I really feel like this will be a good thing for me and I’ve learned to trust those nudgings.

So there you have it, the long, the longer and the not so short of it. My kids are starting school soon as am I. I just can’t bring myself to quit school now, not when I’ve come this far. I have to give up and change so much of my life to accommodate my health that I can’t bear to give up on this goal. Besides it takes my mind off of the pain and stress of my health saga. I just need to make it through the next several months and hopefully I’ll find my new rhythm barring any strange news from the Ortho tomorrow. I’ll keep ya’ posted. In the mean time may I leave you with these words of wisdom…

When Live Gives You Lemons

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5 thoughts on “Pandora’s Box

  1. Oh my gosh, I went thorough this same circus of doctors visits in 2008. Sometimes I felt like a science experiment. All I can say is despite the fact that you have doctors, educate yourself as much as you can through research on your illness. Sometimes doctors can be quick to give diagnosis and plan surgeries without getting to the root of the problem. I pray there will be a light at the end of your tunnel soon and it WON’T be a train, just health and bliss meeting you half way 🙂

  2. I missed reading your blog. 🙂 It’s everything a health blog should be. Well informed, witty, personal but not a journal, with just enough of a wry smile to keep it all interesting. I hope your boobs look amazing with all the lemons you’ve got, but don’t overdo it. 😉 Looking forward to reading more.

    PS: HOW ARE THERE NOT PICTURES OF YOUR CAMERA PILL??? I MUST see that.

    • You are too kind! Glad you ‘re still liking the blog, I worry I complain too much. 😉 As for pictures of the camera, I was too busy showing it to my boys and by the time I’d remembered to take a picture it was already down the hatch… and I certainly wasn’t going to take a picture of it on the other end of its journey. LOL

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