Monday, May 09, 2011

Hiya!

Holy crap - it's been TWO MONTHS since I last blogged here. It's hard to believe! Well, actually, it's not hard for ME to believe, but if you know me and how much I love to talk, I could see how you might be a little alarmed that I've been so quiet.

You know, Thumper's mother said that if one doesn't have something nice to say, one shouldn't say anything at all. It's advice I try to follow.

So what I have I been doing? Sigh. Lots of feeling sorry for myself, mostly. Let me explain.

I've mentioned before how I've been diagnosed with endometriosis. As far as diseases go it's not a heinous one - it won't disfigure my face, it won't kill me ... it's just really painful. Horribly painful. I understand it isn't painful for everyone, but I'm not one of those lucky few. I have tried over and over again to get the issue resolved - I had a laparascopy in September to remove the endometriosis, which should have given me a few years' of pain free living. I had no relief at all. I went back to my regular doctor (the laparascopy guy was a jerk, although I do think he did a good job with the procedure) and my regular doctor agreed to send me to a different specialist.
I was basically ready to have my uterus removed. I'm not having children so really my uterus is a wasted organ and if it's causing me pain? YANK IT. I went prepared to make my argument to the new doc, to make him see that I was serious.

It's very difficult to explain the pain I feel to someone who doesn't feel this kind of chronic pain. When I'm not in pain, I'm perfectly fine. I can do anything, go anywhere ... I don't suffer at all. When I *am* in pain, I can't function. Sitting, walking, standing, laying ... every position I can put my body in hurts. I have this terrible fear that the pain is coming in the days before it begins (I suffer between 10 and 14 days each month). I worry about going out. I fret that I wont' have meds or that I'll be somewhere I can't take them. I've developed an intolerance to my big pain killers, so all I can take is Ibuprofen which doesn't help. When the pain hits, I cry over and over. I hate living, I hate that I'm going to suffer for several more decades, I hate it. Most of all, I hate that this pain controls my life, not the other way around.

So it was with a huge bundle of nerves that I went to the new doctor. I had heard great things about him and wasn't disappointed. Despite being insanely busy, the new doc went over my surgical notes, notes from my regular doc, everything in my file. He spent more than half an hour with me to explain what I came to realize was the horrible truth: there is no surgical option.

My endometriosis is in an unusual place in my abdominal cavity. The spots sit near my femoral artery, the nerve bundles that control my legs and feet, and several important tendons and tubes. There's simply no way to go in surgically and remove it to alleviate my pain. Removing the uterus will do nothing, unless they take my ovaries too. They won't take my ovaries because I'm too young - I will suffer osteoporosis, among other serious things.

The only option for me to treat my condition was the single worst option I'd heard about - six months of a drug called Depo-Lupron - a drug that puts me into an artificial menopause for six months. Six months of night sweats, hot flashes, bone loss, depression, insomnia, weight gain, facial hair growth, hair loss, and more. And those? Just the COMMON side effects. Slightly less common: headaches, bone pain, sore muscles, nausea, dizziness, etc. Four years ago, I made a conscious decision to stop putting hormones into my body. I was worried about what eleven years of drugs had done to my body and wanted my body to do what it wanted to, what was natural. Now I'm going in the completely opposite direction.

To say I'm not happy is a massive understatment. For two days I was inconsolable. Now the doc did put me on a second drug to reduce the side effects of the first. But it's not perfect and has side effects of its own. I sobbed through the appointment, I sobbed in the parking lot, I sobbed through the rest of the errands I had to run in town. To be told that there's no real solution was not what I wanted. To be told that this wretched drug was my best bet at reducing my pain FOR A WHILE (since it will probably grow back eventually) was not okay. I am still not okay, although I am slowing managing better. For about two weeks, I couldn't function. I'm not sure if I'm dealing with depression as a side effect of the drug or if I was just so upset that I got into a funk I couldn't get out of. I didn't want to get up, go to work, knit, drive ... anything. If I lowered my guard for a single moment, I cried. I cried in the car, in the bathroom, in bed, everywhere.

Thank God for my husband, who let me completely break down last Friday night. Who listened as I cried some more and was terribly negative about my chances for a pain-free life. While I whined about the horrible side effects. As I cried about how this isn't how I want to live my life. Without his support I'd be so much worse off than I am. I don't know how I'd get through it without him. I'm still not sure that I will get through it, but I'm going to try. I'm going to hope that the six months will be over quickly and I'll be okay after that.

Here's hoping.

3 comments:

Fox In Detox said...

I know how exactly what you're feeling. I've been living with the same thing for about 10 years now. I get a little bit of relief by starting pain meds two days before the storm hits...complete agony is reduced to moderate suffering, but functioning is completely out of the question... and like you I thank God for my husband. He is the only thing that keeps me sane through those 9 days of torture. I hope your treatment works...hang in there.

Alice said...

I cannot imagine what you are going through. I'm so sorry, honey. To live with chronic pain is just unimaginable to me. I'm keeping my fingers crossed that this works for you. And don't stop researching your options. My mom has chronic pain from arthritis and found that accupuncture has helped tremendously. Keeping looking for answers and I'll keep you on my prayer list.

All that said...i was sooooo happy to see that you blogged again. I've missed you. :)

loribird said...

I'm also happy to see you posting again, though so sorry that it's not good news.

Hoping with all I'm worth that you get some relief. And also I love you muchly.