another teary day

My pain is not only destroying me. It has been crapping all over my life for a while now, but now it is crapping on the only thing good in my life.

I don’t know how to make it not ruin anything more, other than stop being in pain, and stop being on pain meds. The problem there is I have tried lots to not be in pain, and the other options are terrifying to me. The other issue is even if they do work; their side effects would likely make me loose Scott.

Since as depressed as I am now, I know it is nothing compared to what happens when my hormones are messed with. No one wants to be around me then, not even my own parents. I turn into a suicidal monster of a person.

On the other hand going as I am is ruining things also. I can’t think about the future, I do when I am day dreaming, but in it I am always healthy again. When will that future happen? Scott can no longer see the future either, my pain is eating him.

I love Scott so much, yet the pain I have is not only ruining things for me anymore but for us.
My next pain management appointment is in a couple weeks I believe. In a perfect world I could walk in and tell him the pain is still crippling me and ruining my life and that we need to do something about it so I can function like a “normal” person. The reality is I will go and he will refill my prescriptions if I am lucky, (he I believe will refill my Tramadol, but unsure about Demerol since it is my old family doc who would normally prescribe it).

I need less pain. Less pain would make it so I could do more, help around the house more, get a job, and be a better person. Less pain would mean I would be less depressed. Less pain would likely mean I wouldn’t fear the things I am, the things that if pain stays it sounds like will happen.

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I am laying here on max Demerol still in allot of pain (max Demerol on top of Tramadol) with a heating pad on my lap. I think if it gets worse later today I will taxi it to the local hospital perhaps they can give me a few hours without pain, and a few solid minutes of sleep. This will give me a break, but depending when I go it might also give Scott a break.

I barley slept last night even though I was beyond exhausted, took me over an hour and a half to fall asleep. Then I woke up loads of times because of pain, once at 8am (were on afternoons so that is the middle of the night for us) to the point I was crying from the pain, but was in too much pain to move or do anything about it, and Scott looked asleep so I couldn’t bug him. Somehow I fell back asleep till 12, at that point I hobbled down the stairs and took a Demerol and as it kicked in I fell back asleep for a few minutes then woke up again from another pain surge. This time the alarm was going and Scott was not in bed. Turns out he barley slept at all last night either because of my pain and whimpering and moving around. Tonight if pain as bad, I told him I would sleep on the couch, so he can get some decent sleep. He needs his sleep seeing as he works hard all week, and hard around here. Then he looks after me, I am worse in neediness then a child and he has always said he didn’t want a child (he did not say those things together, I am the one making those parallels).

Not going to lie, moments like this the thought of cutting out my inners is welcomed while they cause me this much pain, I often joke about it. The reality of that idea is far different when I am not on so much Demerol and still unable to move.

My two "Options" left

My two "Options" left is what i end up writing about in the end.

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I am welling up with tears again,

In my head, we would move to Fergus and then everything would be fine. I would feel well enough to shop at all the local stores when I wanted, and then even better so I could get a part time job (and not be fired for missing days) and then even onto full time work. That was what the plan was in my head. I forgot to mention, also in the plans was making friends with the neighbours, and then later with people at work.

The truth of it is we have now lived here for 2weeks as of tomorrow and I have made it to the closest store (the grocery store) once and that is all. That trip required hours of waiting till I felt best, Demerol and ended up with my grinding teeth plenty from pain. While at the store I was reminded that I was unprepared, I had not taken anti-nausea pills ahead of time, nor did I have anything with me to settle my stomach, but thankfully being in a grocery store that wasn’t too hard to find, but did make me rush to get to the check out rather fast as to avoid vomiting in the aisles. Rushing made me forget one of the key reasons I was shopping in the first place, but I managed to make it back and not throw up so for me I guess that could be considered a success?

I am just getting so sick of this body.
My illness will never kill me, even though in many ways it works like a cancer.
Though it has killed my getting a secondary school education (but I did finish high school and it did mess that up many times but with an extra year in school I made it out, but that was before I got worse). It has destroyed my social life generally speaking. The inability to move much without pain has made me gain allot more weight, also did the experimenting with Lyrica to see if it would help with pain, this has destroyed all self confidence I might have had. Taken away sex drive, well that is not entirely true but that almost makes it worse since I am left wanting when my body is unwilling to comply.

Being home all the time, unable to work makes most people assume (including myself) that I would be able to at least be somewhat useful as a "house wife" (even though I am not a wife), doing dishes, laundry and general keeping the place in order. It’s not as though there are even kids (the hardest part) to look after while doing other things, and yet I am unable to do most things. Or I can do them without tears from pain, if I use Demerol but that might mean I don’t have it when I am throwing up from the pain sitting in one place.

I should be happy; I live in a great neighbourhood in a great house and have an amazing guy by my side. I don’t have to work, (ignoring I can’t) to support self at the moment. Though with all this going on I am depressed more and more.

Joy more tears, the real kicker is seeing as I have tried all medical means of treating my Endometriosis, including some experimental ones there are no options left except for 2 I am unwilling to try. Truthfully of those 2 only one is even an option since no doc I have come across is willing to tie my tubes let alone give me a hysterectomy.

Those options are danazol (believe that’s the name) and seeing as each and EVERY time I took drugs that effected hormones (adding any to the mix) I have gotten worse/more pain. Along with many other hellish symptoms including becoming suicidal! I would get allot of the more uncommon side effects even, so the thought of trying a drug known to have a list of possible hellish side effects (including facial hair growth, and a forever lowered voice off the top of my mind) I am simply unwilling. Since hell, even my endo doc agrees with me, looking at my past experiences I would likely end up hairy, sounding like a man and on top of that in even more pain. It’s not worth it!

The other option is a hysterectomy. Doctors are unwilling when you are young and even more so when childless and since I don’t plan on changing the childlessness and I can’t age over night its barley an issue in their eyes. But MORE importantly I think is my reasoning for not wanting a hysterectomy, and it’s funny since although you would think my reasoning would be important to people, those around me don’t seem to hear my thoughts at all!
The fact of the matter is, I know of allot of people who have had the hysterectomy either total (ovaries and uterus) or partial (just uterus) out and are still in plenty of pain. Hysterectomies are NOT always a CURE for this illness. So let’s say I have my insides removed, now is the fun of trying to balance my hormones, oh wait... did I mention any time I have had to take anything that put hormones into my body I ended up in a horrible state? (If you missed that read above paragraph again). Now this could sound mean, and I don’t mean it to, but my mom had a total hysterectomy and ended up being one of those who felt better (yay mom), on the other hand I lived with her for 18years past her hysterectomy and witnessed the time it took to get her hormones balanced, I witnessed those mood swings, saw the meds she had to take to combat some of the issues for no longer creating her own hormones and such. I am terrified of all of it. Since I frankly am not allot of fun to be around now, but my mood issues are pain related not hormone related, when my hormones are off at all I am a complete hellish person to be around, I know this! No one would want to ever be near me let alone live with me if they were off, and if you add the possibility that the pain might not go away when my inners are removed the taking hormone replacement therapies could make the pain even worse.

Yet another reason for my “unwillingness” to have a hysterectomy is I have some hope in the future that they (doctors, scientists) will come up with a way to treat endometriosis, and if they do there is a chance that the meds used to treat it will affect the uterus or ovaries in order to work, well if they are not there how does one get treated now (yes, this is only an issue if the hysterectomy does not help with pain)? I don’t want to put myself in such a situation that ends up making it impossible to use medical advances that could actually treat me.
And yet another reason, that although is insignificant compared to the others is simply, I liked the year I had while my body worked, now endo has claimed my bladder so I already feel very old and decrepit, I often don’t feel very feminine as it stands with how my body acts, and how it has acted in the past. I am almost at the point to admitting another issue I had in the past, that still effects me now and again, (I wrote it out and I can’t) Most people who mean much to me have either been told by me, or told by Scott about this issue, and as it stands others in my life don’t need to know but if you want to you can ask and I might explain it on a one on one way, or later may be willing to admit this issue fully.
But it effects me in a way that also makes me feel less feminine at times and well, removing the parts that make one “female” is allot to wrap the brain around when you already have issues with your femininity in your head (another issue that would be horribly messed up by replacement/unbalanced hormones!).

So basicaly i end up getting sad since i am in constant pain and am really out of options other then pain managment at the moment. The kicker there is my current pain managment doctor has given up!