My endo is getting bad again without having birth control.  I also think I *may* have a cyst on my left ovary… though it’s the wrong time in my cycle for one to be there… so it could just be that I’m pmsing and hurting due to that, since (if my body decides to function as right as it ever does) I should be doing that right now.  With how my emotions have been, it wouldn’t surprise me to find out either one.  I’ve been an emotional mess, as well as having some other hormonally caused issues, so it could be my hormones going all out of whack (again), or it could be me pmsing… /shrug … who knows.  Hopefully I will soon.

Some stuff my friend Jen wrote that I thought said it really well (she has endo and cysts as well, and the cysts are like mine, birth control or no we both get them, on the same ovary, except mine always seem to pop, and it looks like she’s on her second for the year that will require surgery 😦 ).  “Called my doctor…they were closed already. They couldn’t do anything anyway, they are two hours away now…plus…it’s not like I can afford ANY medical care. I’m already 13,000 in medical debt already.” (I can relate to that, still owe on my last lap (endo surgery), have money owed to the hospital for two ER visits in two weeks, and other medical bills are piling in, though at least I shouldn’t get too many more even if I keep getting medical care, due to the program I’m on….. which unfortunately won’t help with rheumatologist costs or most of the prescriptions i’ll probably be on for lupus).  “I HATE this country. I count the days that George Bush is in office. I LIVE the medical nightmare of the USA…the sad part? I’m NOT dying…I just FEEL like I am half the time. But since I’m not dying and my problem can be “solved” with a hysterectomy…then I don’t deserve anything…any help…any medical care….”  I don’t know that I hate the USA, but I DEFINITELY HATE the way that medical stuff is dealt with here.  And I although I’m glad I’m probably not dying any time soon, I hate it due to the fact I can’t get coverage or govermental assistance beyond just the basic needs for my health coverage.  There is no cure at this point for any of my serious medical issues.  Treatments for the ones that actually are treatable are several hundred dollars, and between E and I, we make too much to qualify for help with med costs.  $400 for the prescription to  help my bladder (a month), a few hundred for the Lyrica that would help my fibro (and I don’t think that’s even a month supply), about $100 a month for the meds for my endo (depending on which birth control I’m on… the one I was on most recently would still be about $50 a month), I don’t even know how much the meds for my lupus will be, depends on what treatment the rhuematologist thinks will work best… but probably some type of anti-malarial and a steroid of some sort from what I’ve read.  And these costs are just to keep my body functioning so I can work.  Guess what – I have never been on some of them, and the birth control is the only thing I’ve been on in over a year.  You know why?  At least in part due to how our health system is in the US, and the fact I can’t afford those meds.  AND… that doesn’t even include any type of pain management.  That’s simply for stuff to keep functioning.  My pain management right now – High dose naprosen (generic alleve) which causes more joint issues for me after a few days on it, so I can only take  it 3 -4 days a week, and tylenol, which does very little for me at the recommended doses (I don’t even take above those, don’t need even more issues).  *Maybe* that stuff helps with the lupus pain, when I’m lucky, and it does help with the majority of my IC flares, but it doesn’t do ANYTHING for my endo.  I’m not asking for money here, all I’m trying to do is show how much our country’s  health system is failing to do much for the uninsured and underinsured of this country, especially those of us who ARE ill, and just how much the drug companies are raising prices on meds that I somehow think don’t cost nearly that much to make, just so they can profit off of those of us who actually need help.

Another thing that’s been getting to me.  Although we don’t go see movies in theaters all that often, it is nice to get to.  With how my endo is getting, and with how my lupus gets when I flare, at this point, there’s no way I’ll be going out to see a movie any time soon…. I have to get up and walk around a lot, unless I’m laying down.  And with my endo, even if I’m laying down, I fidget a lot, and toss and turn, because, it’s quite hard to get comfy when you have a lot of lower back pain, your colon is sticking to the back of your uterus (a big reason for the back pain), your left side is constantly swollen, your abdomen may be swollen all t he time, the left side sticks out more than the right, and your left ovary feels like fire pokers are stuck into it all the time.  I’m tired of being home all the time, but being out isn’t much better because of the fact I can’t just lay down or use my heating pad or whatever other means of pain relief I can find whenever I want.  My point basically is, I know life sucks for anyone, but with an autoimmune condition that causes pain, or more than one, every move you make has to be made with caution so you don’t cause more pain, especially on bad days, and going out to do much of anything, can require a lot of planning, and is subject to be cancelled at any time if pain starts spiking or you aren’t up to it for some reason.

And the last topic I have for this: Pregnancy.  I can’t think of a time I haven’t wanted to have kids someday.  Well, endo has a decent rate of infertility.  On top of that, though the chances with lupus aren’t bad (70% of pregnancies where the mother has lupus last), if I have certain antibodies, I will have to be on meds to make it so I have a chance at not miscarrying.  And then there’s the whole, my infant could end up with temporary lupus like issues, or with permanent heart problems since I have lupus.  Even if I pass on the lupus genes, my child won’t end up with it, or at least it’s highly unlikely.  There is a genetic component, but it seems to not pass on directly.  It seems that most lupus patients (most, not all) who have a family member with lupus, are not related to them in an immediate family type of way (so – the relations are likely to be a grandparent, aunt or uncle, or cousins – not so much parents or siblings).  But even without the risk of passing on lupus, it seems highly likely with almost every other illness I have that I’ll stand a decent chance of passing it on to my child.  Part of why I say this is that my mother also has endo and fibro.  And although there is no for sure genetic link, and this is a rare case, my sister also has IC.  Looks like we have completely different causes for our IC, but that link is still there.  Though, at the same time, while all of this is a big concern to me,  my sister made a good point a few weeks ago…. I may have gotten stuck with a lot of this, but her only issues as far as autoimmune ones are the IC (which as I said had a different cause than mine) and CFS.  So there is no guarantee that my child would actually end up sick, especially not as sick as me.  I’m just not sure I’d even manage to get pregnant, let alone not miscarry.  The odds definitely seem stacked against me when it comes to all of this.  And it’s breaking my heart.  I haven’t actually *tried* to get pregnant yet, so I don’t know for sure if I can or not… but what I do know is that in all the time I wasn’t on birth control while married to my ex, I never got pregnant, and so far it looks like I’m not pregnant since going off birth control this time.  Of course, with my ex that’s not a good example… due to some of my issues there’s basically no way we could have tried for a baby…. sex wasn’t in the picture a whole lot due to the VVS and vaginismus.  Idk… I just know that it hurts to know that my dream seems to have the odds stacked against it coming true.  There are other ways I could be a mom, but… my dream has always been to get to experience pregnancy (even knowing some of the not so pleasant… side effects) and get to raise my baby, from birth on.  So even if I become a mom other ways, I still lose part of my dream.  I don’t know why the pregnancy part is so important to me, but it is.  And I think I should probably stop my rambles and thoughts here.

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