TMI...2

Let me start by saying that I definitely feel better than I did the first time I wrote a TMI entry.  Well...maybe not better, but the worst symptoms have definitely decreased in intensity, which is good.  I would definitely be better if not for the new symptoms I am experiencing...


My gastrointestinal system is still not perfect, but it is better than it was.  I am definitely not feeling full and bloated like I was, and I am no longer nearly as gassy (to the great relief of my entire family) as I was.  The ever-present feeling of being constipated has been replaced by unpredictable and sudden urgent needs for the bathroom.  ("Potty emergencies" as a good friend called them while undergoing chemotherapy.  I remember thinking I knew what she meant at the time, but I have a whole new understanding now.)  I think the best way to explain how I feel is to say that it seems as though my digestive system, which seemed to have slowed to a near-standstill is now working at a more normal pace.

Earlier this week, during my Week 2 follow-up call, the study coordinator reviewed the standard questionnaire, now familiar, with me.  She asked about bowel patterns, with a very specific question that was something along the lines of:  "Are you able to completely void your bowel?"  I laughed...uncomfortably before replying "Well...yes, and no."  The study coordinator waited as I filled the silence by explaining that I can...eventually, but that it takes many trips.  I could hear her typing in the background, and thought once again that this investigational study is more intrusive than I ever imagined.  

I still occasionally feel queasy -- but that sudden pooling of saliva under my tongue, followed by a hard swallow and a deep breath or two -- or three -- no longer happens quite so often.  Sometimes these moments leave me hot, sweaty, shaky...even dizzy.  And other times, I feel that way without the nausea.  I still do not have much of an appetite, and struggle to find things that sound appealing to eat...and some smells and sights (raw egg nearly did me in earlier today) are really hard for me.   

Interestingly, while my digestion seems better, I have some new symptoms (issues?  complaints?).  First -- there is my left foot/ankle, which may or may not be related.  It is fine as long as I wear the boot, but when I take the boot off, I can see that it is still swollen at one very distinct spot, more on my foot than my ankle -- up and to the left of the ankle joint.  if I walk around without the boot on (don't go there), it hurts.  By the end of most days, I am happiest on the sofa, with my feet up.  (I think that would be true in life always, actually, but that is especially true now...)

And then there is the joint pain...in my right elbow, right shoulder, neck and just today in my hips.  These aches and pains are new, and not terrible...but having lived with them for a few days, I find myself remembering a time when I lived with terrible, excruciating, lay-awake-in-the-dark-for-hours joint pain -- for months.  I saw a number of medical professionals during that time -- including a rheumatologist -- and underwent rather extensive testing.  No one could ever figure out what was wrong, and eventually, the joint pain resolved, fading into a memory that (when I think about it) leaves me wondering if it was ever really -- if it could possibly have been -- as bad as I think it might have been.  This IS NOT that, but now, I find myself wondering -- as careful as I am about what I eat, is it possible that I had some on-going gluten exposure during that period of time?  At this point, I cannot separate that period of time from the past specifically enough to know for certain -- but I DO know that I was traveling extensively for work during at least part of that time.

A few days ago, a good friend asked me how I was feeling.  I replied cautiously "okay."  She persisted -- "You sound hoarse.  Are you getting sick?"  I didn't think so, and said as much.  And then the next day, a dear friend told me that I sounded hoarse...which made me stop and think.  I tried listening to myself.  (Have you ever done that?  It is harder than it sounds!)  As hard as it was to listen objectively, carefully to myself, I had to admit that I did (do?) sound a bit hoarse.  And then just today, while on a conference call for work, one of the attorneys I am consulting with asked me if I was getting sick.  Hmmm. Add "hoarse" to the list.

But really -- above and beyond anything I am tired...bone tired.  And yet, some nights, tired as I am, I simply cannot fall asleep.  Am I tired because I am not sleeping well?   Maybe.  But, I really feel like I am just simply tired...like something immeasurable is being taken out of me.