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!! 🙂

Got the cyst resolved – planned to update on that, got stuff (hopefully?) accomplished towards me going back to work – an update that will be password protected when I get back to my full self again (or possibly sooner, the majority is already written anyway) – and I go into a lupus flare as I was planning to update on my life recently – because as much as it’s not fun, my wrist really isn’t enough to keep me down, especially since it is finally almost healed.
Then, tonight when I wake up with E, and move to roll over, I realize moving really really sucks. All of my joints (Seriously, ALL of them) are inflamed and hurting, and my ribs are bugging me. I sent myself into a lupus flare! If I’d been paying attention I probably could have kept it to a lesser degree – but I just thought my elbow was sore and hot from resting it on the armrest of my chair too much, and that the knee bugging me was from too many NSAIDS the last 3 weeks, even though Alleve doesn’t do that to me, and if it suddenly did start to it wouldn’t take 3 weeks to start! So those have been added to my pre-flare list! What’s my pre-flare list you ask? Too long to add to this post right now lol! I’ll post it later. It’s all the different signs I may develop before a flare.
Luckily, I have the purrinator 5000, aka M, who can have his front paws at my collar bones and cover my whole abdomen with purr power lol! Seriously, right before I got up to type this, his front paws (well, toes actually) were resting on my collar bones, and his tail reached down to my knees lol!
Anyway, back to the futon for more time with my friends the Mythbusters!!!

Got the cyst resolved – planned to update on that, got stuff (hopefully?) accomplished towards me going back to work – an update that will be password protected when I get back to my full self again (or possibly sooner, the majority is already written anyway) – and I go into a lupus flare as I was planning to update on my life recently – because as much as it’s not fun, my wrist really isn’t enough to keep me down, especially since it is finally almost healed.
Then, tonight when I wake up with E, and move to roll over, I realize moving really really sucks. All of my joints (Seriously, ALL of them) are inflamed and hurting, and my ribs are bugging me. I sent myself into a lupus flare! If I’d been paying attention I probably could have kept it to a lesser degree – but I just thought my elbow was sore and hot from resting it on the armrest of my chair too much, and that the knee bugging me was from too many NSAIDS the last 3 weeks, even though Alleve doesn’t do that to me, and if it suddenly did start to it wouldn’t take 3 weeks to start! So those have been added to my pre-flare list! What’s my pre-flare list you ask? Too long to add to this post right now lol! I’ll post it later. It’s all the different signs I may develop before a flare.
Luckily, I have the purrinator 5000, aka M, who can have his front paws at my collar bones and cover my whole abdomen with purr power lol! Seriously, right before I got up to type this, his front paws (well, toes actually) were resting on my collar bones, and his tail reached down to my knees lol!
Anyway, back to the futon for more time with my friends the Mythbusters!!!

I’ve had friends asking lately what’s going on with me and my life….
Basically right now I haven’t worked in two months, I’ve had no income, I have not been allowed to return to work (by Walmart, both of my doctors have agreed it would be good for me to go back a couple days a week), and my whole life has been reduced to E’s and my house. I also have no friends where I live, they have all moved from where I live, and my inlaws are basically the only people I know outside of my “coworkers”… I’ve become isolated because a disease (another disease) is attacking my body, and at this point I can’t even go out in the sun without getting pretty ill. On top of that my mind only works part time… I’ll be mid conversation when suddenly I can’t think of a word, or I can’t remember what was being talked about.
Hopefully I’ll be working again soon, but what’s being talked about right now, especially with the whole not going in the sun factor, is doing medical billing – if I get to do that (I’d like to) I’ll unfortunately be even more isolated because I’ll still be home all the time….. working out of the house.
So yah, that’s what’s happening with me – I’m 20 some years old, stuck i n my house, and my body is attacking itself, but I won’t even die from this, I’ll just be stuck in pain…. hopefully my meds help and I’ll be able to do more again. At this point, I’m a 20-something-year-old stuck in a 90 year old body.
So I may not be the best at keeping in touch with everyone, partially because I’m embarrassed by the state I’ve reached due to my illness, and partially because there are days I’m not even sure how to say what I’m trying to, and partially because I don’t want to burden everyone with how sick I am.
Have a nice day!

So I get to go back to work on Wednesday, as a door greeter.  That will be my job title until either everything evens out (with medications) and I decide to go back to cashiering, or I can stay as a door greeter for the rest of my time at this job.  We’ll see what happens.  Things went exactly how I had hoped (it helps that the mother in law of the manager I spoke with has lupus, so she knows just how ugly it can be), I will be working two nights a week for now (the other door greeter’s nights off), I will be working on getting my disability papers done so I can have a stool or chair to sit on or in, I will be a door greeter, and I will eventually be able to add more nights if I feel my body can handle it.  I lose a bit of my hourly wage with this decision, but the way we are both looking at it (E and I) is that this 5 weeks (well it’ll be that by the time I go back) I have made no money whatsoever, but when I go back, even at reduced hours and wages, I will actually be bringing in some income.

There are a few reasons for the reduced hours.  One, it makes it a lot easier to see how my body is going to handle me going back to work.  Two, it gives my body a chance to get back in the habit of being awake for several hours straight for the  two nights I’m working.  Three, it keeps the environmental factors with my lupus (the lighting especially) from being able to affect me for too long.   And four, it means I have a chance to rest after my nights off and actually be ready and able to go back to work the following week.

I can’t express how much I am looking forward to going back to working.  At this point I don’t know if I’ll ever be full time again, that’ll depend a lot on the meds and how well I respond to them.  I know I don’t plan to work full time where I am ever again… I’d like to find another job, that is more suited to what my body can handle, and maybe then, if I am physically capable, I will go back to full time.  Currently, I’m just looking forward to getting out of the house again, for more than just small errands.  I’m looking forward to having some interaction with people again, plus with the nights I’m working, I’m not there for the worst of the busy nights, so I don’t have to have too much people interaction, just enough to get my fill.

I truly think this will be good for me, mentally at the very least.  Hopefully my body is up to it as well.  I went into work for about an hour tonight, to have the meeting with my boss, and to actually get to see the friends I’ve made while working there (at least most of them, a few of them had tonight off) so I was exposed to all the lighting and such again.  I ended up with a headache, as well as having some arthritic stuff in my fingers, wrists and ankles.  After a couple hours at home, and away from all the lights, I felt much better.  With the job I’ll be doing, I won’t be quite as exposed to all those lights, so hopefully that won’t be an issue.  Or if it still is, hopefully it wont be as bad.

Not sure what else to say so I’ll end it here.