Monday, July 27, 2015

Post 1 of 5: Questions Answered... Thoroughly

Hi, everyone; sorry it's been so long. My laptop broke and we still haven't replaced it, and it's no fun writing anything long on a tablet or a phone, especially when the stupid predictive text always chooses the wrong word (I swipe "sincerely" and it gives me "Shively"???) and auto-"corrects" things that are exactly as I intend them to be!  But I'm doing it now, for you. Don't mention it. 😊  

In addition, I've been sick and tired and also on the road a lot. Like a lot a lot. I did compose drafts of posts two or three times, with photos and everything. But I never finished them, and by the next time they were obsolete. Well, one of them might still be helpful; I may post it belatedly.

I'm here to give an update on my health and related factors. I want to preface this by saying that I am generally happy with my life and pass most of my time doing things that I enjoy. I'm going to present a pretty miserable picture of my physical condition, but I'm not miserable (except in moments of severe pain or sickness). My physical condition is only one aspect of my experience of life. I consider myself very blessed! 

I usually try not to dwell on my symptoms when people ask me how I'm doing, because I don't like to focus on the negative, but today I'm just going to lay it all out. Even an optimist has to unload somewhere, sometimes. I guess I just want everyone to understand that when I sincerely say, "I'm doing well," I'm mentally excluding all of this, because it's normal for me. But the scholar in me wants to be thorough, and the historian in me wants to leave an accurate record. This is basically a journal entry.

Hi, it’s me from the future. Having finished writing this and observing that it is very long, I have decided to break it into a series of blog posts, each answering one question that I am frequently asked by well-wishers and friends.  This is Post 1 of 5.

First question:

"How are you doing?"

Physically, I believe that I'm getting worse, but what else would you expect with chronic kidney failure?

Warning: discussion of bodily fluids ahead; skip the next two paragraphs if you're squeamish. (Squeamish -- what a great word! Pardon me while I add it to my "Favorites" on dictionary [dot] com. Righty-oh!)

The last couple months, my anemia went through the roof -- or perhaps I should say it went through the floor: where a normal hemoglobin level for a woman is 12-15.5 grams per deciliter, mine got down to 6 point something. Because of trouble with my blood pressure, I had been unable to have my Epogen injections, which boost red blood cell production. I was so tired and weak, my muscles were always sore, I was getting much more frequent migraines, there was a pallor to my skin, and I was always cold (except when I got heat exhaustion, which happened three times in June), but it all happened so gradually that I didn't observe the change. 

When they got my latest lab reading, they called and told me I needed to go to IV Therapy at the hospital as soon as possible for a blood transfusion. I went in that same day (last Monday) and received two units of blood. That makes 8 or 9 in my lifetime; the others were all due to blood loss after Sunbeam was born. I figure I've about broken even with all of the blood I donated in my late teens and early twenties; I did it every chance I could until my family doctor forbade me because even back then I was anemic, although less severely.

I have felt better since the transfusion: more energy, fewer headaches, more pinkness to my skin, more interest in life. I can still tell that my residual kidney function is decreasing, though, by a lot of symptoms taken together: the severe anemia indicates that I'm just not making enough red blood cells; I'm producing less than half the amount of urine I was six or eight months ago; my bowels are very sluggish and irritable; my blood pressure has been hard to control; my ankles have started swelling again; I itch all over, all the time; I've lost a certain degree of coordination (I'm always fumbling things and losing my balance) due, I think, to weakened muscles; my insomnia/RLS is returning; my hair sheds like mad; and my appetite is unpredictable.

I also feel like my mind is never 100% sharp: there's a perpetual haze in my thought processes. I get drowsy several times a day, I make a lot more silly mistakes than I used to, my memory has diminished, I stumble over my words more, and my responses are slower -- both verbal and physical. I've always been a cautious driver, but now I would call myself a nervous driver, because I can feel that my perception is narrowed and my reflexes are slower. I get Mr. T to drive me whenever possible. I think this mental state is less due to the disease itself than to my cocktail of medications, compounded by insomnia. 

The drugs also give me severe cotton mouth, so if you see me chewing gum or popping Smarties, that's because it's the only way to keep saliva flowing in my mouth.