Thursday, February 26, 2009

Like a Guinea Pig

Ever feel like you are part of an experiment? I guess it takes a certain type of situation, but for the past year and a half I have felt like a doctor's guinea pig. And really not just one doctor, but many. Western medicine is so broken up with specialists in different fields and then I have my primary doctor who has been trying different things also. I have taken a bit of a break from writing because I was trying corticosteroids for a while and I wanted to take full advantage of the fact that I could walk and not hurt. So I exercised a lot. Well, a lot for me. But then the depression started setting in and it hadn't been that bad in many months. Then my boyfriend and I started having problems. Long story short- it's been a roller coaster of a ride over the past 3 weeks!

The good news is that an old high school friend hooked me up with a clinic that does acupuncture on a sliding scale and I've been wanting to try that for a long time. I've just never had the money. But every time a different doctor wants to put me on a different pharmaceutical, I cringe. I can't even begin to count the number of different prescription drugs I've tried over the past 18 months; a friend of mine recently said that I've been single-handedly keeping the drug companies in business! Luckily, through the hospital I go through, their pharmacy heavily discounts all of my prescriptions. Otherwise, I would have been out on the street a long time ago.

So I've had two visits to the acupuncturist and I'm very hopeful- pretty much because all my docs have tried everything they say they can. The only problem is that my acupuncturist wants me to cut out dairy and sugar. Hello??? Ice cream, is my favorite food group! So I guess I have to start cooking. Which I LOATHE. And I can't even tell you why- I've tried for years to like it and figure out why I hate it so much, but I just can't figure it out. Anyway, I'm sure it will be good for me. And I'm willing to try anything right now that doesn't have to do with a pill!

I feel really uncreative right now- like I'm blocked. I can't even pick up my sketchbook because I'm making all those excuses that I always do: I don't know what to draw/write about; I don't want to get out a bunch of supplies because I don't want to clean it up; I don't have the energy; what if someone makes fun of it; what if it's ugly? Excuse after excuse after excuse. I do it all the time. I wish there was a pill for that! But that would just be a quick fix. And I'm all about trying to get at the root of the problem. Today I overdid it; I walked a couple blocks to my hair appointment, went to an art store and stood for 20 minutes without my cane (oh my legs!), and then went to Wal-M@#$ (shit like cat food and litter is SO much cheaper there, I just can't help it!). And now, my whole body hurts and I'm extremely tired.


Wednesday, February 4, 2009

Utterly Hopeful and Alone

Yes, you read that correctly. You see, in the very recent past, that would have read hopeLESS, but my rheumatologist finally prescribed me some prednisone. For those of you not familiar with autoimmune diseases and the crap I've been dealing with for the past 2 years, this is the medication-sometimes the only medication- that seems to help people in my predicament. I've been told that my labs and bloodwork don't show significant inflammation, so the docs have been weary to try me on prednisone, which I understand. However, I've been going through TWO YEARS of drugs that haven't even come close to touching the pain.

On Monday, before I filled the prescription, I started crying; it was a mix of things, really. My eyes seemed extra sensitive that day and were watering like crazy to begin with. I was in a lot of pain and in one of those moods where I was so SICK of hurting! Just SICK of it! And then, there was the task of getting the script filled. Whenever I have to go to the pharmacy, it is an ordeal. It's at the hospital, I have to park in the parking garage, I have to use my cane because the walk is pretty far. And then I have to stand in line for what seems like forever. But they severely discount my meds, so it's worth it. But I was also thinking about the fact that this prednisone is the last resort for doctors.

If nothing else has worked, and the docs have been telling me all along that this won't work, why would it? Then what? Is it hopeless now? These questions started bombarding me early Monday afternoon while my boyfriend was getting ready for work and I had to go in the other room (the only other room in our apartment) and cry. I had to just let it out. What was I facing? I couldn't face another med not working. I couldn't face telling my boyfriend that this, too, isn't touching the pain, and I can't go for a hike or a bike ride with him once the weather gets nice. I couldn't face telling my son that the doctors tried another medication for mommy but it isn't working, so I won't be moving back anytime soon.

With tears streaming down my face, my boyfriend in the other room, I had never-ever- felt so alone. My boyfriend has been over this whole ordeal for some time now and I'm not sure why he's hung on this long. I don't feel like him, my family, my friends, or any of the people I've met in support groups understand what I've been going through and what I've had to give up. At this point, I just didn't feel like I could talk to anyone about my concerns and have them fully understand what my emotions were all about, and that's what I craved- more than anything. Someone who truly understands.

But...I also had some hope about the possible good effects, but wanted to reserve that for how I actually felt after I took the drug. And the doctor warned me that he wouldn't keep me on the medicine for more than 2 weeks. If it seemed to help my joint pain- really help my joint pain- then he would try methotrexate, a drug similar to the corticosteroids, but with fewer bad long term side effects.

It's been almost 48 hours with the prednisone now and I don't want to jinx anything so I'm not going to write anything much about it. I am also trying (with doc's orders) to distinguish the type of relief it is giving me so that we can go from there. Hopeful=Normal Life Again. Fingers crossed.