I almost can’t help but find some twisted amusement, as my invisible illness (the namesake of this blog), seems almost visible these days.
There is no doubt that I have not been myself lately. As I mentioned in a previous post, I am desperately struggling to function through heightened anxiety, depression, panic attacks, and all around emotional instability.
I seem to have lost all ability to control my emotions, and even worse, my reactions and the words which spew uncontrollably out of my mouth, unfiltered, and without prior thought or regard for my surroundings and others in my presence. My stress level seems to have taken a toll and my body and mind are doing as they please, despite my constant resistance.
Not only are these changes in my personality visible (and often embarrassingly audible ~ LOL) to those around me, but my appearance has undeniably been going downhill.
Once again, eating has started to cause significant pain and the stability in my weight, which finally seemed to be under control after my pancreatic bile duct blockage and Sphincter of Oddi Dysfunction was corrected during the ERCP, sphincterotomy, and stent placement/removal, that took place last December, has now returned to its previous unstable state.
My gastroenterologist told me that I may not immediately gain back all of the weight that I lost over the past 2 years, as we both recognize that I have other sources of chronic pain, which limit my ability to comfortably eat, so those are also contributing factors. However, he also knows that I am committed to eating healthy and nutritious foods (when I can) and assured me that stopping the continuous weight loss (and of course treating my dysfunctional pancreas and biliary system) was the most important goal and should be the result of a successful procedure, as my body would regain access to the bile and other substances necessary to digest food and absorb nutrients.
Well, I’m sorry to report that not only have my upper GI symptoms returned but my weight plateau has disappeared and I rapidly lost the 5 pounds that I managed to regain since December, plus I lost 2 more pounds, which left me at 86 pounds the last time I had access to a scale (about 2 weeks ago). That is less than I weighed at the time of my procedures in December!!! I would be willing to bet that I weigh less than 85 pounds right now (which is the lowest weight of my adult life – as far as I can remember). The worst part is that it isn’t stopping or improving. I don’t have a scale at home, although I need to get one, but I can feel the difference and see the difference and unfortunately, so can everyone else, especially as my clothes no longer fit and almost fall off of my skinny, malnourished body.
I don’t know exactly what this means, but I can only assume that my pancreatic duct is already blocked again (which was not supposed to happen). I can’t go back to the doctor quite yet, for a variety of reasons, but I realize that I will have to, as soon as possible, unless things miraculously get better on their own. As soon as possible is over a month away, at best, so wish me luck until then.
The only somewhat positive thing I can find in this scenario, is that my chronic illness, which has almost always been invisible, is now a little more obvious to those who are paying attention. For once in my life, I look more similar to how I feel … SICK, IN PAIN, UNWELL, TIRED, AND ILL!!!
Healthy people may be unable to fathom how hearing someone tell you that “you look awful” or “you look like shit” could possibly be considered a positive thing. I’m not crazy enough to think those are compliments (although some are said out of concern). What those words mean to me is something very important to anyone with a chronic invisible illness – VALIDATION. I hear that they BELIEVE me. YES I DO look sick because I AM sick and I have been for all these years.