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

Tuesday, July 03, 2012

I am tired. And a bit scared.

I am exhausted.  The biggest reason is absolutely stupid.  I filled my pill box with the supply I needed for the time Dr. Mind was gone.  I noticed I was about out of one dose of the 2 Seroquel doses I take (3 50 mg, 2 300 mg) but I knew these should be here.  The problem was that Dr. Brain forgot to bring them to me once and so they were mailed.  I asked they be mailed instead of UPS because I'd rather not have $5000 (around that, no idea what the price is now out of pocket) sitting on my porch in the heat or being stolen.  When I went to get the package it was postage due.  I was due for my social security check but didn't have it yet.  I thought I had enough of the 50s to get through (I did, I just missed some when I filled the pill box) and I did not have the cost of postage.  I was too embarrassed to ask them to keep it for a several day period until my check came and even with my check that was pretty expensive for my budget.  So I sent back.  Turns out they won't pay for it to go to a PO box and I finally got the meds today.  In the meantime I'd been short on the Seroquel dose the last 2-3 days and hadn't remembered.  (Story of my life, not remembering).  I also had my usual delayed hit of adrenaline from the storm and that didn't help Saturday night.  Last night was a few hours of sleep.  I napped a little this evening but Anna woke me when she was hungry.  I hope I'll fall asleep again fast but that doesn't usually happen.

The next reason is it soooooooooooo hot and I went out to see Dr. Mind, did a few errands (replacing necessary food from losing the contents during the power outage and getting some meds from Dr. Body's office).  But this is trash day and I had all that spoiled food so I had to clean the fridge and freezer out and carry out a ton of trash.  I thought first that I'd be ok to also pick up some sticks but then the heat hit me and inside-salty food-lots of water-cool bath made me decide my yard can be full of sticks and branches until fall for all I care.  I always forget how much my meds make me hate the heat.

The little bit scared.......I see Dr. Brain Saturday so hopefully she will have some good advice.  That heavy period I mentioned was not good.  We're still saying our prolonged good-bye's and the pain is still more than I'd like at this point (none would be great, just a bit occasionally would be much better.  Instead it's much to all of the time with varying severity.)  I do not want to go through watching that pain take over my life.  I also do not want to keep spending my periods knowing that I'm bleeding way too much and that I am to keep waiting it out until December and then it will take time to schedule surgery, for them to figure out the anesthesia parts, and so I"m sure it will be January at the earliest.  I want to give up on waiting and seeing.  I understand the rational and the truth is that early December is the soonest I probably would do it unless I was dying because I have vacation scheduled for Thanksgiving at the beach, a retirement gift to our mom that my she is paying half of because of my situation changing.  But we didn't know when we booked it that I wouldn't be working.  In fact I did all the research on where we'd like to stay while recovering from surgery last year.  So that's a big thing and while I don't want to be in pain for it I also don't want to be recovering from fairly major surgery. I still hope that there's a chance of moving it way up but I have a feeling that's a dream.  I know my doctor needs to be conservative and be certain this is the only option because I only 36.

The thing is that I am really scared of surgery now.  Last year I went into surgery one person and came out another.  Surgery seems to have played a role in my rapid psychiatric decline and when I think of this surgery that can be a bit long (I don't know how long I was under last time because they let me sleep through a lot of the prep stuff but I think I was just sleepy until they were actually ready to start cutting; I remember thinking it had been about 2 hours when I woke up and saw a clock but that wasn't all surgery and I have no idea how long was just sleeping in the post-op area.  I think surgery was maybe an hour and this sounds like it will be considerably longer unless they open up my belly completely.  And if anyone feels that that the faster the better I'm fine with doing that.  The gyn. talked about trying to see if she can find a way to do it vaginally with a spinal but I don't think I can have a spinal with MAOI.  I will at least get that answer from Dr. Brain.

A lot of me knows that surgery really just made a process that had been happening a long time go faster and that I have recovered.  Not like I wish, but I've always known that I was likely to eventually face some decline with my bipolar.  I've known for years I was running out of drugs for back-up and that a time would come that I'd have to wait for science to catch up to me.  Dr. Brain told me that in different ways for a long time.  Nobody thought surgery would trigger it, but I went into surgery with a great deal of decline in the 9 months since I had whooping cough.  I worked really hard to cover that decline but we kept adding Seroquel and not coming down.  Last June/July I think I'd really gotten worse than I was willing to admit.  The noticeable thing immediately post-op was the changes in my memory and thinking.  And my brain is wailing that it has no more to give to that cause.

It's mind versus body, a catch 22.  And it's scarier than I can explain.  Psychiatrically I want to do this as soon as we can so that it's over with, the damage happens or it doesn't, and I don't have to live with pain and dread of the next period.  If the pain keeps getting worse I'm going to wind up in the ugly situation of needing pain meds.  This is problem with only being able to take tylenol, I progress to narcotics way too fast and we don't need me on vicodin for an extended time either.  I remember the waiting period last year (that I chose) as being unable to do anything because of pain and anemia for months.  My life is already restricted and I don't want to restrict it more.

Yet I don't want surgery and psych stays to balance meds when there really isn't a way to do that anyway.  And I am very afraid of a repeat.  I know there are somethings we learned.  I need both a sedative at night because I do not seem to sleep in hospitals at all, I need my meds to be given like I take them, I need an option if pain gets worse and it's not time for vicodin yet.  And all meds must be chosen even more carefully than before, which may be impossible.

I guess Dr. Brain and I have a lot to discuss (she'll be in contact with Dr. Sweetheart) and I am hoping that she recommends just doing this.

I think this post is whiny.  Sorry, not intended that way.  I am just so afraid of even greater losses.

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1 comment:

WinnyNinny PooPoo said...

Glad you have such a great team of doctors to help figure out such a touch situation with the anesthesia and surgery.

Interesting about associating the changes with anesthesia. Wonder if its the anesthesia or maybe the whole experience flares up the PTSD??