Starting a blog is strange. Who will read it? Why will they read it? Do I really think that my life is so interesting that people will come to hear about it's minutea? No. I don't. But I do have two reasons for starting this up. The first is that I'm in the midst of a bit of a medical mystery, that sometimes feels like a medical crisis. There are folks that want to know what is happening with me, and there are a lot of plot twists in this journey that I'm on. A blog feels like an efficient way to keep people informed.
The second reason is that I need to write about this experience. I've thought about journaling privately, but there is something about having the opportunity for my words to be read and seen by others that seems to feel good and right for me at this moment. This experience of medical mystery is a lonely one - despite the incredible amount of love and care that I get from so many people around me. There is still no one but me going through this. Only those that struggle with a chronic condition can really understand what it's like to have one's healthcare turn into a part time job. To have the outgoing line in your city's hospital programed in your phone so that when the doc calls you, you know it's them. To get the feeling of dread when there's an email from your doc - what now? Now what do they need me to do? What's changed? What test came in? What did they learn? What do they need from me so that they can learn more? So I thought - a blog. And perhaps others will either begin to understand what this is like, at least for me, and maybe others who have gone through something like this can speak up. And we can all feel less alone.
Most days I'm fine. It's true. Most days I am. I live my life, I manage the countless medications I am on, I handle logistics with getting to the doctor, scheduling childcare so that my 8 year old does not have to sit in the waiting rooms of Group Health her entire summer, and watch carefully...so carefully...for any changes in my symptoms so that I can jump on it right away and make a plan. Being able to manage these areas of this experience gives me a feeling of control and competency that is about coping with the lack of control and competency that I have right now. If I am a "good" patient, then I can feel good about myself. Maybe things will change. I'm following the rules with style and grace, so things have to get better, right? No. Not right. Which leads me to the dark days.
Oh, the dark days. The days when I'm so so sad that this is happening at all. They days when I think...really? Really? I am a healthy 36 year old woman, how did this happen? Why am I on so much prednisone? How is it that I am putting poison into my body in order to heal? If I don't put this poison into my body, then I loose my ability to see clearly. Literally. My vision begins to fade. The light hurts me, floaters abound, people's mouths begin to disappear from their faces - that's as far as I can let it go. When my lovey's mouth disappears, I get on the horn with the doc and get the OK to go back up to my stupid high dose of predni and then wait a week for her mouth to come back. So far it always has. But every time I'm scared that it won't.
And let's talk about side effects. I get my lovey's mouth back. I also get a lovely puffy face. My cheek bones have all but disappeared. I call this extra puff on my face my "predni-jowels". I'm putting on some extra pounds. Hips, thighs, belly. Not what they used to be. For awhile I avoided these lovely and vanity damaging side effects. This last week they seem to be setting in. My body is not mine. I don't recognize it. I don't recognize my face when I look in the mirror. I can see it, but it's not mine. I look hard to find the lines of my self that I know are under the predni-jowels. So far, I can still find those lines. And I hate that I care so much about a little puff, but I do care. I want to see and feel ME. And I don't. And that makes coping with this mess difficult.
Now let's move on to Predni-Tone. My feelings are loud and on the surface. When I'm happy, I'm manic, when I'm sad, I'm depressed, when I'm angry...watch out. A friend of mine said that prednisone made her an angry person that got a lot done. For me prednisone makes ALL my emotions shout as loudly as they can. And I have a very clean apartment. The people closest to me in my life likely get the brunt of this. My kid get's my cranky self and my lovey gets my tears. Poor lovey. I see her and I feel safe to get vulnerable and so I cry and feel all the sadness that comes with having a chronic condition with a lot of uncertainty. She holds me and loves me and takes me in. And then I feel guilty. And guilt is always a productive emotion.
Those are the two big side effects that I'm having with the predni right now. Jowels and Feelings. The others feel minor in comparison - tremors, stomach aches, trouble falling asleep, an obscene craving for coffee (which I'm certain isn't helping with the aforementioned side effect) - but these feel like mere blips compared to the others.
Shall we talk about the Methotrexate now? I'm only on my second dose of this one, so the jury is still out regarding how well I'll tolerate it (medical speak for how well my body will process the poison) but last week I enjoyed waves of fatigue, emergency bathroom messages and some nausea. I'm on the look out for mouth sores and hair loss. Those are the two I'm most concerned about (there's that vanity again). I should probably be more worried about lymphoma, bone marrow depletion, lung stiffening and hepatitis, but my rheumatolagist tells me that those are very unlikely to occur.
My biggest issue right now? I can't put it down. I can't say, "today I'm just not gonna think about it. Just for today." I have to think about it. I can't escape it. It's always there, either in the version of one side effect or another, or in the version of vision changes. And really, I just want to have a drink. I'm in NYC, my lovey is in the hotel bar and I want to join her and have a drink. And I'm scared to because my liver is dealing with a lot right now and I'm not really supposed to drink. I'd probabaly be fine, but do I want to test it? Do I want to add something more to the list of things to watch out for? Not really. But damn, a martini right now would taste lovely. Put it down. Let it go for a minute. Nope. Not tonight.
