E had a doc appt Tuesday, he’s now on a different pain med which seems to be working better for him (he’s sleeping again, and not having to sleep as long to try to feel rested, the sleep is restful and he gets a good 8 hours almost every day so far… Thanksgiving being an exception due to timing of eating and all of that), he has a new bp med which we haven’t had money for yet, and he is to have an epi pen at all times (no money for that yet either). His cholesterol is high, so we are changing our diet some more, but there aren’t too many more changes we can make, it’s just a matter of them actually starting to make a difference… we made some huge changes to our diet about two months ago, though we’ve been eating pretty healthily over all since we got our own place about 15 months ago. When money gets tight we’ve had to go back to cheap food, but now that we have the food stamps things are a lot better. So we just need to make some adjustments and things will be good as far as diet. The other thing the doc said would generally be recommended is exercise, but with E’s hip, and the fact he walks at least 4 miles a night at work, the doc was more concerned with him not getting more walking in lol. E’s been having elbow issues lately (the past few months, but it’s gotten really bad the last three weeks or so), and the doc examined it while we were up there… he suspects some form of degenerative arthritis, though is unsure what kind, or why. There have never been injuries to that elbow, so they aren’t sure what is going on yet… we need to go get xrays done on it.
We both survived Thanksgiving… it went pretty well over all. 🙂 And E survived working Thurs night/Friday morning so that’s good too. We have a storm coming in so both of us are hurting, but we would have been anyway, me from just going out to spend an hour or so with E’s family and trying to keep myself functioning well enough for that time to be sociable, especially since it was more than just his immediate family there. It was E and I, E’s mom and step dad, his half sister, his step sister and his step sister’s boyfriend. Some friends of his sisters’ stopped by at one point too. I fixed the salad I made (not all of the ingredients had found their way to our house) and sat down in a chair, where I stayed for pretty much the whole hour we were there. I was up for maybe 1/4 of our time with his family, the rest was spent sitting down. But I did ok acting normal and came home, relaxed a bit, and E and I went to sleep. I’ve been sleeping 10+ hours almost every time I’ve gone to sleep since. I think I’ve had one nap for a couple of hours, but otherwise each time I close my eyes I am out for several hours. I’m on new pain meds, which I’m sure are lending themselves to the sleep situation as well.
I think that’s all the news here…
I’ll be talking to E at some point this weekend about the name thing I mentioned in my last post, I’ll try to remember to post about it afterwards, but my memory is affected lately (more than usual) so we’ll see… I’m just so tired all the time right now while trying to adjust to the meds. Which is both good and bad…. I’m getting lots of sleep, which I really need after all the sleep issues of the last few months, but I’m also having memory issues because of being so tired. And no, I’m not taking the full prescribed dose, my doctor and I both feel I should take the least amount possible and only increase to the full dose if I have to.
Oh, and I’m also at the point in my cycle where I’d normally be getting ready for a period, so we’ll see what happens when I try to push past it with this birth control…. I’m worried there isn’t enough estrogen, but we shall see…. that’s all playing a role in how tired (and emotional) I am right now too….

OH! I never shared my news. Last week (or the week before, I can’t remember now) I received a letter in the mail from our Walmart saying I needed to get my paperwork for my leave turned in or they were going to terminate my position. My doctor had taken over two months to even get the paperwork back to me, and I needed to find my paperwork, so I got this letter about a week after finally getting my paperwork from the doc. E and I talked about it and decided that since it’s been over a year since I went on leave, and almost a year since I was released by my doctors to return, as long as I was given a chair to sit in and a certain position (people greeter), and Walmart still hasn’t let me back, that it was just time to give up on it, especially since I have applied for SSI/SSDI now. So I’m finally free of all that drama!! 🙂

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Title taken from an awesome song from Buffy the Vampire Slayer – It’s the title of that song.  The whole episode “Once More With Feeling” is pretty incredible… It’s all a musical… one of my favorite things.  🙂  I guess a more fitting title would be “Going through the Motions” which is another song from the episode.  I almost think I should divide this up by songs, because different songs fit for different parts… but I don’t think I will.
When I was at the rheumatologist’s office last month she ordered blood work and a urinalysis, checking the blood for stroke and clot autoantibodies, checking my kidneys for protein and such.  Just doing the final check for my kidneys being cleared (at least for now) and checking to see if I can go back on birth control.  I made an appt with my gp’s office to get the labwork done since they have a lab, and I’m on a program that makes going through their office cheaper, since I have no insurance (and am currently out of work – have been for coming up on 3 months now).  When I got there with the lab work (keep in mind I drive an hour to get to this office) and went to the lab, the tech had never heard of the tests, and they weren’t in her book of what the actual lab can do.  So one of the other ladies called the rheumy’s office and found out (as well as possible, my rheumy is only in the office tues/thurs) what tests were meant, and the tech called the lab who does the work to find out if they could do the tests.  They said the tests that were written were very vague, and they didnt know exactly what she was asking for, so they gave her what the tests could be, and how to do them.  The ladies and I talked about whether or not to do any of them, and decided against it due to not wanting to do expensive tests and then have them be the wrong ones.  We also didn’t do the urinalysis due to the fact I’m on my period, so that would mess with the results, and the ability to do some of the tests potentially.  They suggested going to the hospital lab in the town I live in and seeing if they could do them, but I don’t have the money for them to do the wrong tests, so I’ll just have to have her order them again, and have them done at the hospital connected to the office she works out of…. that way I get them done the same day, and if there is confusion they can reach her.  Plus, I should be off my period by the time I’m up there.  I also need to talk to my primary care provider, and see if the rheumy and I work out a protocol, if he can continue treatment and I’ll go see her every six months or year, because we can’t afford the drive to her office plus the nearly $100 out of pocket just to be seen (and that’s with a discount).  If my primary agrees to that I need to talk to her on appt. day and see if there is some way we can work that out.  Otherwise, I guess I’m already at the end of the line for treating my lupus until I get insurance that will cover me or get on disability.  And then I have to hope they take medicaid, because otherwise I’ll be in the same boat for paying out of pocket… though at least I’ll have some income at that point. 
I’m hoping to either get on disability (because I’m seriously almost a prisoner in our home most of the time – and when I do go out I have to wear layers and gloves and hide as much skin as possible… I wear hoods when I go out… and usually even in stores (yah… I get weird looks for that even if it’s raining or snowing – but on sunny days?) so I just have no idea what I’m going to do this summer.  At least it doesn’t get as hot here in the summer as it does where I grew up.  I think we had one day over 100 last summer… it’s usually mid 90’s for the highs…. so if I have to go anywhere out of town I guess I’ll ask my mother in law if I can borrow her car (no a/c in ours) … she’s already said we can borrow it when we need to… If I can’t get disability, or even if I can, I’m hoping to get in with vocational rehab (somehow) and get some kind of job training to work from home… but at this point the lady up there said she had no idea when they’d start working with me even if I did qualify.  So I’m not sure where to go from here…. I’m just…. frustrated.  So frustrated.
On top of everything else… I’m really beginning to think the Plaq is affecting me mentally… but how do I know it’s not the lupus?  Lupus can cause the same issues?  And on top of that… how do I know it isn’t just everything?  I mean – just everything added up could be stressing me enough for me to have nightmares, and for me to be depressed.  I’m pretty sure the 3 hallucinations I’ve had since the beginning of January are the Plaq though… since I haven’t had them happen until I went on it.  The scariest was yesterday on the way up for the lab work that didn’t happen…… I was driving and I saw the road going the opposite direction from how it actually turns ….. luckily I was a way away from t hat turn (not a long way, but far enough that I wasn’t right on top of it) and I was done hallucinating by the time I reached it.  It was really weird realizing the road actually went the opposite way when I came out of it though.  I’m not sure what I’ll end up on if I have to go off the plaq though… from what Im reading it’s the most commonly used in the US due to the fact it is felt to be less likely to cause eye side effects.  And one of the other two anti-malarials is only available through compounding pharmacies… so that much more expensive, not likely to be covered by insurance even if I had any, and most areas (from what I understand) don’t even have this kind of pharmacy.  I’ve actually used a compounding pharmacy in the past for hormones… so I am familiar with how it works…  I’m reading up on the other antimalarial now, and it looks like it’s an injection only…. which means either doctor’s office visits to have it done or – more likely due to why i’d be taking it – home injections… E and I would be instructed on how to give them (I’d more than likely be asking him to do them) or asking my motherinlaw to come over after work and inject me… she’s a nurse.  I’m so…. so frustrated on all levels with this.  My endo and everything else has been annoying and painful… but the lupus, it’s flat out frustrating and aggravating me.  I thought I’d made changes in my life and thoughts with the others…. they caused no changes in my life compared to what this lupus is doing to me.  Am I going to lose myself over this?  Which brings me to my next topic….
I’m really beginning to think this is all driving me crazy.  I’m just slowly feeling more and more like I’m losing my grip on reality and on life.  It’s usually worst while I’m laying down trying to fall asleep, but it’s happening more and more.  I’m just … I’m not sure how to put it.  This all started when I started getting sick in September, and it’s been getting worse, so that now I wonder if I’m slipping all the time.  Though at the same time, if I’m still sane enough to wonder if I’m slipping, am I slipping at all?  Or just becoming paranoid that I’m losing it?  I’ll have to write on this more later, because right now I’m exhausted and not sure how to get what I want to across.  Seriously though, I think I’m slowly losing my mind…. and that terrifies me. 

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.