This illness brought to you by the letter "C".

Well, I got the call last week (I think it was?) about the blood tests that the new rheum had run. As he said, he is more than willing to look into the autoimmune side of things, though he seems to feel that my troubles are caused solely by fibromyalgia. I do not accept this. It's pretty plain that I do not accept this, and several of my other doctors agree with me. 

Good grief, I wish there were a way to get them all under one roof so they could put their heads together and share all of the opinions and knowledge about my body and its workings or lack thereof… I get so tired trying to coordinate all the appointments and rides and tests and information sharing. It's hard enough for me to just make it through the day without trying to overdose on something, anything to make the pain go away just a little bit. How am I supposed to expend all this energy trying to figure out how to get my doctors to figure out how to get me better when I'm losing energy by the week, the day, the hour? I don't have much left in me for this, and it's a bitter irony that the increasingly sick person must put forth increasingly greater amounts of effort to receive care the sicker they get. I need a caretaker, for reals. Or at least a secretary. I could wish that C took more of an interest in my health affairs… doing research, knowing my meds and what they're for and how often to take them… or even just their names? It's all left up to me and it doesn't seem fair because he's relatively healthy and I'm not and I just really don't have it in me anymore, guys. I mean, this post alone… it's taken me days to scrape together the mental energy to even type this up. I feel very alone with my sickness very often, but I don't feel that it's fair to complain or even ask more of C, because I am already such a burden. He is such a support for me, so taking care of my own medical stuff is the least I can do, right? Plus there is the whole "hanging on to the last vestiges of my independence as a human being and/or adult" thing. Did you know that, not only do I not drive unless I absolutely have to (it takes a ton of energy, it's usually painful, and I could have a twitching attack/go faint at any time and I don't feel that it's very safe for me to be driving), but it is difficult for me to get the walker in and out of my car by myself? Didn't used to be that hard. Now that I need it more than ever for getting around, it is more difficult for me to access it by myself. This seems to be an increasingly familiar theme in my life, and I absolutely hate it.

Aaaaaanyway, this wasn't supposed to be a rant about my feels regarding my sickness, it was supposed to expound upon my theory that I'm pursuing. Right, so, here's the theory.

The blood tests showed no lupus activity, which is good, but that also means that another potential answer has been crossed off the list. MS and lupus, both of which seemed good fits as explanations for my symptoms, are out. So what is making me so sick, aggravating the fibromyalgia symptoms? There's got to be something. I just keep worsening, and every time I do I'm sure there's no further rock bottom to hit… but I'm always wrong. My mother is understandably quite concerned. While I was back home visiting for Christmas ("back home", as though I've ever actually lived there LOL. But home is where the heart is, and my heart is with my family, so I guess it works.), she told me that she was afraid this was the last time she was going to see me. Not that I'm going to drop dead within the year, mind you, but my physical health has deteriorated so far that traveling is very difficult for me, even just road trips to the big city to see my doctors. It takes a heavy toll, and traveling across the country with all the planes and the sitting and the walking through terminals and… it's all just really hard. Really, really hard. So unless something changes, I probably won't be able to go out there to visit again, and she doesn't have the funds to come out here. Sucks, but that's reality.

She was very taken aback by my physical appearance as well. Several times she made the comment that I looked like a cancer patient. I was pale, weak, dark circles all around my eyes (not just underneath), my face is puffy… I just don't look healthy, despite what people and doctors say. I don't. I may "look good" in that I'm not gaunt faced and jaundiced, but I don't look healthy. I just don't look like I'm dying. On the phone with Mom last week, she told me that yes, I do look sick, and she's right. She is also worried that I have cancer. I know, I know… it sounds like we've been spending too much time with the WebMD symptom checker, right? Well, honestly… (and this is hard for me to admit) cancer is something I've been worried about too. I mean, I saw David wither away, and that was devastating. The Chemo Princess passed away just last week, but she didn't look like he did… at least, not in any of the pictures that I saw. I've had MRIs and CAT scans within the past 6 months, and none of those showed any tumors or anything, but as my symptoms keep evolving it has been concerning me more and more. Burning bones? Really? I mean, what the heck is responsible for that? Because it's not just a minor annoyance but a genuinely distressing, excruciating experience that genuinely concerns me. Stuff like that shouldn't be happening to your body. I may have fibro, but not everything that I experience can or should be chalked up to that. I believe the body will give you warning signs that you can interpret if you are paying attention, and I really believe that my body is throwing up neon signs, asking to be evaluated and considered beyond the scope of "just fibromyalgia".

So I started doing a little research, and I came across this little gem of a website explaining Cushing syndrome. I was curious about how my symptoms may be related to my adrenal insufficiency, since we've got the thyroid probs under control, and when I read about adrenal tumors and Cushing syndrome (not Cushing's Disease itself, mind you; that's something different.) I felt some puzzle pieces potentially fall into place. You see, at first it seemed silly for me to even consider Cushing's, because I have adrenal insufficiency and don't make enough cortisol (which is why I supplement, every day, for the rest of my life) and Cushing's is when there is an excess of cortisol or other adrenal hormones in the system. Doing this research, though, brought me to realize that my endocrinologist has gotten my thyroid levels good and under control but she is doing nothing to monitor my adrenal insufficiency… which could be fatal, given the right circumstances. That's not acceptable, and I mean to remedy the situation. I'm trying to get an earlier appointment than the one I have in 1.5 months so I can discuss this with her. I'm dreading the thought of possibly having to find yet another doctor in the big city, but I will if this doctor doesn't take me seriously and start keeping tabs on my adrenal levels. I'm taking the same amount of cortisol supplement that I have for years, but is that the level my body needs to be functioning optimally? I don't know. I haven't been tested. The only relevant test was where the insufficiency was confirmed.

So what makes me think that this could be part of my problem? A few of the symptoms fit what I'm struggling with: 
  • Purple marks (1/2 inch or more wide), called striae, on the skin of the abdomen, thighs, and breasts
  • Acne or skin infections
  • Upper body obesity (above the waist) and thin arms and legs
  • Round, red, full face (moon face)
  • Thin skin with easy bruising
  • Backache, which occurs with routine activities
  • Bone pain or tenderness
  • Mental changes, such as depression, anxiety, or changes in behavior
  • Fatigue
  • Headache
  • Increased thirst and urination
Possible complications include:
  • High blood pressure
  • Kidney stones
  • Serious infections
I've marked in red all of the symptoms that apply to me. Some are new, such as the striae, the upper body weight gain, the fullness/puffiness of my face, the increasing bone pain and tenderness, and my blood pressure that has been steadily rising over the past year.

One cause of Cushing syndrome can be a tumor on one of the adrenal glands. "Cushing syndrome is caused by constant, high levels of the steroid hormone cortisol. A tumor on one of the adrenal glands causes about 15% of all cases of Cushing syndrome. Adrenal tumors release cortisol. In adults, adrenal tumors are less likely to be the cause of high cortisol levels. Pituitary tumors (Cushing's disease) are more often seen in adults. Adrenal tumors are found in women more often than in men."

Cushing's disease is when the pituitary gland makes too much of the hormone ACTH. ACTH then signals the adrenal glands to produce cortisol. A tumor of the pituitary gland may cause this condition, tumor of the adrenal gland, or tumors elsewhere in the body that produce cortisol or ACTH (such as the pancreas, lung, and thyroid). I know I don't have Cushing's disease, because I don't make enough cortisol and the disease is too much. It's like the difference between hyperthyroidism and hypothyroidism. I'm hypo on the thyroid and the cortisol. If, however, there's a foreign something somewhere in my body that's giving me excess amounts (because remember, I'm also taking cortisol supplements on the daily), then that could possibly explain some of what I'm going through, if not all.

So, this illness brought to you by the letter C. C for cancer, C for Cushing's, C for CFS. I intend to pursue this matter, along with a few other options such as myalgic encephalitis (CFS) or an infection of the Vagus nerve. Lyme disease might not even be too much of a stretch. We'll see. One way or another, we'll see

3 thoughts:

Post a Comment