Medication Side Effects

How many times have you seen those commercials that used to play incessantly about prescription drugs, and the guy's voice comes on at the end for 15 seconds of the fastest listing of side effects ever? My friend Chad and I used to laugh at those -- "I took this pill for diarrhea...and I died." It was funny and not at the same time, since both of us have chronic illnesses which make meds a part of our daily life.

First, let me say, that I am grateful for my meds for my ulcerative colitis. I think I've mentioned before that I was extremely ill, and a few years ago when I finally got the right stuff it has made ALL the difference in my life. I mean, I'm actually functioning really, really well most of the time. Stoked! Unfortunately, in my case (and I'm only something like .000001% of the population where this occurs) I have a significant side effect from the meds. Low platelets and low white blood cells. I mean, really low - I get to the "bleed to death" threshold. I have a hematologist/oncologist who tracks them. At first they thought I had leukemia and told me in a very off-hand way that was what was suspected. Within a few weeks, then confirming it over the next several months with regular and constant blood work, they have guessed instead that it's the meds since technically it's a side effect...even though it's extremely rare. Rare doesn't mean never. So, I've been living with this reality for several years.

The symptoms started with unexplained bruising. It's crazy - my neck, torso, under my arms, inside my thighs....not places one bumps into things. They just show up. I later found out this type of spontaneous bruising is indicative of low counts. I watch myself now, if I see bruising starting I know I'm low. And really, now I can feel it, something off within me when the counts drop. It's a trip, being in tune with my body and understanding it, but I need to in order to stay alive. I also have to watch how it looks - does it seem normal? darker? larger? if so, off to the hospital....and trying not to fall down on my way over so I don't bleed to death there on the spot.

I also get these weird little red dots on my skin. I used to see these when I would have a flare up before I was on the meds. My doctor at the time (who didn't know I had UC) said they were age spots. I thought that was weird not only because I was only in my early 30's at the time, but they would come and go. I later found out they are called petechiae, which basically are small pinpoint hemorrhages of the skin. They aren't bumpy, they look like red freckles. They appear, and then go away. I'm also only an infinitesimal of those who get that as well. I get them when I have a flare up and when my counts drop.

What can be done? Well, my hematologist wants me off my meds. My gastroenterologist says I can't do anything different with them due to the severity of my illness and I just need to deal with it. She suggested no skateboarding or other things where I might crack myself open when my counts are low. They even battled it out over the phone; that was fun. The both have my well-being at heart. I tried reducing the dose on my own as a compromise, but I got sick again. So, all I can do it just know myself, watch for the signs, and make good choices during the times when my life is more fragile.

Disclosure: Telling others that it won't go away

I've been thinking a lot lately about disclosure. Disclosure about being sick, about having something chronic, about something new popping into the picture and how to talk about it. I've been dealing with this recently with the onset of a problem with my lungs. Frankly, it's something that freaks me out way more than all of my other chronic illnesses combined. My dad had COPD and my mom is currently in late stages of it. They were both smokers, my mom is now on full-time oxygen. I watched my dad die from pneumonia but his lungs were damaged from the COPD. I guess it scares me the most because there isn't an option to just remove the lungs, whereas some of my other illnesses, if push comes to shove, I can take things out. It's scary not being able to get my breath, the one thing we all need to be able to do. Hmph.

I feel guilty telling anyone about it. It's like, 'what else??' Not that anyone has said that, but it's how I feel inside. I've mentioned it to a few close friends, but I've confided the depth of my fear to only a very select few. Maybe I'm superstitious, that if I really say how scared I am that it makes it more real, or manifests it in some way. I have one friend who periodically asks me how I'm doing, and I just tell him that I'm choosing to think happy thoughts....basically, I do a 90 degree turn away from the conversation. I'm building little walls around myself, keeping everyone at a distance. I think if I really let it go I'll completely fall apart. I don't fall apart easily. Maybe it's all the voices in my head I remember from people telling me how strong I am. I don't feel so strong right now, and I don't want to disappoint them.

All of this gets into a bigger picture about how to tell someone you're sick. Chronically sick. My best friends are always there. Most of my other friends understand. My lovers usually freak out. Some people just ignore it. The truth is, at some point anyone in my life has to know to some degree. It impacts my ability to travel, to make plans or see them through, to lead a normal life much of the time. If I don't disclose, the absence of the truth makes it worse for those being impacted....they figure I'm a flake, or I don't want to see them, or worse. It's a burden on everyone who knows. But it's the right thing to do in the end. As hard as it may be, it also lifts the weight a little from me with every person I tell, once I find the way to do it. That's a small part of what friends are for.