Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Saturday, July 02, 2011

My new game

Between my 76 mile each way (to the office, don't always go there) commute, plus 50-100 miles/day of driving between patients, I have a lot of time to think.  This can be good.  It can be bad.  Right now it's not the best thing ever.  I need to know the details of my surgery, and Dr. Brain hasn't gotten back to me so I probably won't know what she approved until next Saturday.  Some of it I do know, I don't think the entire laparascopy added, general anesthesia part is going to change unless she strongly objects and I already know she won't.  But whether the Mirena is allowed is up to her and the more I read the more I realize it's my sole chance at pain relief unless my ovary is so mangled that it is removed, and in that case there's probably more going on that will cause pain.

The more I read the more likely I think it is that I have endometriosis.  I had totally forgotten last year when I asked Dr. Body about my crazy periods and pelvic pain he told me that because I've only just started to learn to identify pain that it is possible that I have had pain for years that I've ignored.  I kind of put that out of my head after that but it does make a lot of sense now that I think about it and also that it's taken months of the pain getting more severe for me to finally make statements like "I can't live with this."  I have been having pain (that I was aware of)50% of the time or more for the last year, with it becoming increasingly severe the last 4 months, and it wasn't until it was keeping me immobile that I finally admitted to my doctor that it is too much.  And then I realized Dr. Ovaries essentially told me the same thing without having had the conversation Dr. Body and I had about my inability to admit to pain, my lying about what hurt in an exam to avoid looking stupid, and how he can help me admit to it.  One of the several good things that has come from destroying my ankle is the realization that my scary high tolerance for dental pain that caused the dentist to tell me he will not ever trust me if I say something doesn't hurt that he thinks should, or if I say mild pain he's going to assume severe until proven otherwise is not limited to my teeth, is that I've talked about this, become more comfortable with it, have helped Dr. Body know how to help me talk about pain since it's harder to talk about it to a man, and made me be more cautious about how I react when I hurt.  When I hurt my ankle I was at Dr. Mind's office, and I sat and suffered quietly until I got to his office where I bandaged my knee, then took my shoe and sock off and saw the signs of what I knew immediately was a severe sprain or break.  Even then we had a full session although I had to sit where I never sit (always think of it as "his seat" although he's not sat there since the 2nd session probably but it's where he was the first day and I'd be where I was that day except that he often would sit in another chair that was a weird angle that annoyed me so I moved and have sat in the same place for every session except the ones when my ankle was hurt and I think once when he wanted me in a certain place for a point he was trying to make)) to keep it up.  By the end of the session I couldn't get my shoe on.  So he carried my stuff and helped me out to the car, while I walked in sock feet on 15 degree pavement (not recommended).  Then I went to urgent care and refused a wheelchair, insisting on hobbling around, which is probably why they didn't realize how bad it was hurt.  Dr. Mind yelled at me when he found out I did that, months later.  (When I say yelled I mean more like pointed out that my reaction wasn't appropriate, in a kind but blunt manner.  He has only yelled (sort of) once, and that was deserved--I neglected to mention my suicidal thoughts until I was leaving, hoping to avoid discussion.  I no longer do that.  We've had few heated discussions, and I tease him about yelling, but shouldn't say that here. I know I've made him mad several times in the early days and he should have been mad; I fought him tooth and nail about things he was doing to keep me safe.  Eventually we reached an understanding that I do not lie or avoid things related to safety; I do not fight if he says I need to be hospitalized (I went behind his back years ago and presented my side to Dr. Brain before he did; I won on the basis of she'd known me for years and he hadn't, but truthfully, he was right); and he trusts me because I've shown I'll be honest right up to telling him I was not safe to be home and needed to be admitted to the hospital, and because when we had a very long argument about whether things I was doing to keep busy while manic were safe and he found out I was planning to use a carpet knife which I shouldn't have been near since I was shaking wildly from recovering from lithium toxicity and at the end after talk of hospitalization for safety, 48 reasons it was a bad idea to have that knife and why I couldn't care less because I thought I was fine and wasn't purposefully going to hurt myself, he finally just asked "if I let you go home are you going to use that knife?" and I told him the truth, yes.  So he kindly talked for a few minutes and all the hospital threats went away as he seemed to have LISTENED, and so I agreed to give him the knife.  He calmly went the car with me and managed to seem to just be talking while carefully pocketing it, and a month later he gave it back.  That was a turning point for us, about 3 months into our relationship and it was a turning point-he doesn't threaten the hospital and I don't lie or refuse to listen to what he says about danger.)  And I have no idea what all those asides are for, but I'm exhausted and waiting for fireworks to end so they are staying b/c I'm too tired to fix them.  Anyway, the point being, that experience let Dr. Mind help me see how little attention I paid to pain, then the horror of learning I had run many miles on an ankle that should have been in a cast made me realize all the pain in my life I HAD to ignore because you hardly can complain about the bruises inflicted by someone intentionally to that person, and because many things that happened to me when I was very small hurt and I didn't understand so I made up other reasons for the pain, or I just blocked it out.  Which is the whole point here, as I suspect that it has taken my progress in therapy to reach the point that I can feel pain I may always have had.  I know I had very painful cramps when I was a teenager.  They got better when I starting running daily at 14, and I never thought much about running teaching you more ways than I had already mastered to subvert pain.  And now I do acknowledge pain and so I've had to hurt with pain I may have ignored for many years.

Endo. is not going to be a good diagnosis for me.  It's not for anyone, and I do have the advantage of not being affected by infertility in the same way most women are.  I also, I suppose, have the advantage of being a bit older and closer to menopause than some people, but that's kind of a grim thing to call a happy thing; we're still talking at least 10 years of hurting.  For me though it is really bad because hormones help, serious hormones are the best help, and for me I'll have whatever can be removed in August taken out, I'll have the "less conservative than usual" consideration for ovary removal, and whatever help the mirena gives, if Dr. Brain is ok with trying it, which I will be begging for (already did but she was away and didn't get the email).  But that's about it.  What is removed can/will grow back.  I don't think they can keep going in and removing it, esp. with general anesthesia plus MAOIs plus asthma being such a bad combination.  I also can't take normal pain meds, meaning I'll be using vicodin to get through periods and praying to be in the percentage of women who don't have periods on the mirena, assuming I can have it.

I could be wrong.  She hasn't said the word really, just that she is certain I'll continue to have ovary pain/cysts and that we'll do whatever we can.  But I've read a lot, and it's the most likely diagnosis and I have a lot of symptoms.  I'd wondered why she wanted to do the cystoscopy (camera in bladder) thing after not thinking it was that necessary a year ago, and now I think that's also to see if endo. is the cause of blood in my urine.  After having had clots from my bladder a few times, that is also more likely I believe.

The rest of the thinking time is trying to figure out the $, trying to figure out how to make work happy that I'm taking 2 weeks off for a minor surgery, and trying to pre-plan.  Since I probably won't be very comfortable doing much for several days I went ahead and got a Nook (like a Kindle for those like me who hadn't heard of those until today; I realize by not watching TV I probably am the only one in the world) so I can get books loaded on it to read however I am comfortable.  I also need to get some DVDs.  That's next pay.

And I think the fireworks are finally about over, so I'm going to take meds and sleep for about 6 years.

1 comment:

Anonymous said...

I hope you got all the sleep you needed. You're working hard as always, trying to figure this all out. I'm sure it's hard to relax and trust. I'm glad to hear that you think you can concentrate on reading.

Blessings to you on this Independence Day weekend. I don't like to random fireworks, either but it's a wonderful holiday to celebrate.