My Autoimmune Life

And who would blame me with everything that happens when I get ill, and all the illnesses I have.  It’s a little taxing (well, more than just a little) on the brain to deal with so much all at once.

But you see, what is going through my head has a lot to do with very certain things, though all of my illnesses play into it all.  I’m currently on my period – and, although I’d never call my periods “normal”, there is a sort of normal for how mine go.  This month however, all the pain (other than brief moments just a couple of times when there have been twinges on the right) has been on my left side.  And before my period started this month, I spent a few days very sick to my stomach – it was pretty miserable, and I blame – at least in part – the lack of birth control and it’s keeping my body “normal”.  Then, when my period “should” have happened (if it was going to fall at the normal interval for people) I stopped feeling so sick.  A couple days later, suddenly, there was a lot of pain in my left side, but I thought nothing of it and went back to sleep (it’s not unusual for me to move wrong in my sleep and end up with pain somewhere).  When I woke up to get E’s clothes and spend time with him until he had to go to work, I realized my period had started.  The nausea stayed gone another day, before flaring up again yesterday at some point.  I had to spend all night sleeping or laying on the couch watching stuff because of it, and I’m sick of it.  I’m sick of not being able to do anything. I’m just grateful I’m not in a lupus flare with all of this as well – I don’t think I’d even make it out of bed at all, even to the couch, if that were happening.

Now, onto why I’m feeling so crazy.  Starting yesterday, it really hit me just how little I’ve been doing around the house.  E is the only one working right now, I’m home full time (I really hope I can go back to work on Wednesday part time – all this staying at home isn’t helping me at all mentally), and he is the one who generally is taking out the trash, doing the dishes, and most of the other chores that are done around here.  About all I’ve done lately is take care of myself, M, and make E some food once in awhile when I feel I can stand long enough to get it into the microwave, onto the stove, or into the oven.  I’m not saying I’m a perfect housekeeper at any point, that’s far from the truth, and anyone who knows me can tell you I’m right.  But, I usually at least try to do dishes whenever there is a load for the dishwasher, and keep the kitchen floor swept about… once a week or so lately (until I got sick at least), and try to help with food somehow.  I’m not a good cook – so that’s not something I necessarily get into all that often.  I also keep the cat box clean (well – I change the litter when it needs it – does that count?) and at least try to keep up on laundry.  Lately, it’s been all I can do to keep food in myself and my cat.  Thanksgiving took a lot out of me too, I’m still not back to normal yet, I’ve been doing A LOT of sleeping since Thursday afternoon.  So, I’m currently feeling pretty much worthless.  It’s all I can do to spend time with E when he’s home, I don’t get much else done, and I’m asleep whenever  he is sleeping, and a lot of when he’s gone.  I know my period isn’t helping the sleep, or the worthlessness, but for a couple days now it’s like there is this voice in my head saying “Hey J, You are worthless, and E is going to get tired of having to take care of you and the house, and work, and you aren’t doing anything for him, he just sees you in pain – which doesn’t help with his morale while dealing with all of this – you are just a burden and soon he’s going to wake up and see it!”  Needless to say, there have been a lot of tears lately when I’ve been awake.  I hate my period – this is the worst time for me emotionally – I get pretty frustrated with the lack of ability to do stuff other times, but I work through it.  During my period I get downright depressed.  It’s another reason that continuous birth control, and periods just every few months, are so nice for me.  I don’t crash so hard so often emotionally.  And now I’m facing all of that being taken away from me too… and I just really feel overwhelmed and depressed and… worthless. I’m honestly reaching a point where I hate myself, and I find myself just hoping that there is a light, and that this period will end soon and I can get my mind back where it should be.  If this goes on much longer – I don’t know how much of my sanity will be left – and I’m only halfway through, and that halfway is based on an if I’m lucky type situation.  I just really feel like I’m completely and totally losing it mentally right now, and I don’t know how much longer I can hang on.  I just know I’m scared.

I guess I’m just rambling now and should stop, I just needed to get that out, if you read it, thanks, if you didn’t, well you probably aren’t seeing this part, and that’s ok – because this was more to get this out for me, than for anyone else to read.

Lets see if I can spell spoons right all the way through this post, however long or short it is (I keep trying to spell it with two p’s instead of two o’s).

I mentioned in a post the other day about spoons, and I know a lot of people aren’t familiar with what that means.  I also just realized I never did explain that like I said I would.

The best way to explain it is just to send you to read the story, since at this point I don’t have permission to reprint it.   Click HERE to read “The Spoon Theory”

So when I mention feeling like I don’t have enough spoons, or something else to do with spoons, that is very likely to be what I mean, unless I’m talking about eating ice cream or something

It was cool the other day, after my last post of the day (Exhausted) one of our neighbors and friends called over and said “J, I made some stir fry, it’s just made with stuff I’ve had lying around the kitchen but you are welcome to some if you’d like.”  So I grabbed a bowl and went over.  The unfortunate part was that she has a 4 month (or so) old puppy, and this puppy likes to jump on people still, especially if you are carrying something, because she’s very curious.  Well, to get her to stop, we stick our knee up on which ever leg she’s jumping up, in order to put some pressure on her and show her to stop, it’s not painful, but she gets the point that you don’t want her to be up on you.  Of course a minute later she’s doing it again.  So I was continuously using my knees to get her to stop.  My knees are one of the areas that have lupus arthritis, so that wasn’t fun.  By the time I got home, not only was the lupus arthritis flaring in those joints, but my leg muscles were aching, from me knees to my hips, and my legs felt extremely heavy.  I did have a nice visit with our neighbor though, and we got some food, so it was well worth it.  Just means I slept a bit more last night than I usually do.

Now to pick up where my last post left me.  After taking my amitriptyline yesterday and going to bed, I slept for about 8 hours straight, the alarm finally actually got through my brain 30 minutes after it started going off (I had pushed the snooze button 3 times without realizing it), and I woke up a bit.  20 minutes after starting to wake up I turned off the alarm (10 minutes earlier than I usually do), got E his clothes, and climbed back in bed for cuddles.  (those cuddles, one of the most important “treatments” for me.  I don’t see them as a medical treatment, and neither does E, but they definitely have an effect on my pain and on me relaxing).  At 930 I looked at the alarm and told E the time, he said something about “oh good, we have time for more cuddles” … so I curled back up with him until it was time for him to actually get dressed and ready for work.  When he got up, so did I, I checked my email and the blogs I follow, checked some other sites I’m on, and said goodbye the way we always do to him when he left.

After he went to work, I went back to bed, and was still there til he got home for lunch.  I was freezing.  I think I might be dealing with fevers with my lupus… though no thermometer to tell.   It seemed to have broken when he woke me when he came home for lunch (I was about half asleep again at that point).  Still seems to be broken, since I have no fever aches (there is enough of a difference between them and my fibro that I can usually kinda tell, but it’s not a big difference), my forehead is still cool, and my eyes aren’t feeling like there are fires behind them.  (The last few years when I get fevers I feel like the backs of my eyeballs are on fire, or at least very warm).  I’m also not cold anymore, I’m comfy sitting here in a tshirt, pj pants (my Monty Python ones, thanks Ja!) and socks.  If I’m actually doing feverish stuff, it always seems to be broken by this time of the morning, and starts back up a couple hours before bed, …. so I don’t really know if I’m having fevers or not.

After I finally got up, I sat at my computer and played some WoW, talked to some family friends, mainly a friend I’ll call Wolfie for the purposes of this blog.  When my right fingers and wrist got achy, I decided it was time to read some more blogs, so I looked at friends blogrolls, found some new blogs to look at, and sat back and read… nice and easy on the joints lol.  The conversation with Wolfie was very nice, as we talked about all sorts of things, what’s new with each of us in our respective jobs and lives, and him asking questions about lupus.  He was very concerned that his asking questions would be rude or that he would insult me, to which I replied that asking stupid questions or making stupid comments “Are you pregnant?” or “But you don’t look sick.” is what I find to be insulting.  I see my illnesses as a blessing, for this simple reason: I get to educate people on what they are, and on the effect that they can have on a person’s life.  I want people to ask questions, because if I don’t have an answer, I will look for one for them, and for myself.  When people ask questions, whether it’s just a simple “how are you today?” or a more difficult (due to complexity) “what is lupus” it shows that they care about me, or at the very least are curious as to this illness that I am sick with, and why some days I can do anything (well… it feels like it at least) and others I’m stuck in bed all day.

Now I am typing this.  In a little bit E will be home and we’ll either hop back on wow or watch something.  At some point when I feel the house is warm enough that I won’t freeze transitioning from the shower to getting dressed, I’ll take a shower, and that will more than likely be the end of my activity for the day.

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.

So… I did end up doing the dishes last night/this morning  like I wanted to.  I unloaded the dishwasher and loaded it back up.

Before I get too far into that train of thought I will go into how my “day” has been.  I had lab work and a doc’s appt yesterday that kept me later than I expected, and I didn’t get to bed until after 2 in the afternoon (count a spoon gone for last night and today for me – i’ll explain that in another post for those who don’t understand).  I normally sleep from between 11a and 12p until around 830 when the alarm goes off for waking us (or right now E) up for work.  We both work night shift.  So yesterday I fell asleep after 2 (probably after 3 in actuality) and woke up again at 830 with the alarm, though i snoozed pretty well between alarms until 9.  Got out of bed around 930 to get E’s clothes for him and warm up the house (I generally do this, especially now that I’m not going to work)… we keep the house a bit cooler while we sleep, but it’s nice to have a toasty house when getting ready for work.  Around midnight or so I had the rest of the sandwich (pretty big sandwich) that I had before going to bed earlier in the day, though I had no appetite, I know it’s important for my body to have food in order to keep functioning.  Stayed up til 1am, went back to bed for an hour and a quarter or so, when E came home for lunch.  When E got home and had grabbed food for his lunch, he came into the bedroom and woke me up like I’d asked him to, I like spending his lunch with him.  I also had some more food at this point, although I had no appetite.  (It was a chicken pot pie, and after I set aside what I couldn’t eat, I found out that although M isn’t hugely into chicken pot pies, he will definitely lick them a bit to get a taste, and he does not mind the taste.  I found this to be slightly amusing, though I was relieved I’d managed to keep him away from it until I was finished – He kept trying to get to it while I was eating.)  I stayed up the rest of the night and found my headset so I could listen to music on my new computer (no speakers with it at this point…. we got the basics that we needed and used some old parts as well).  I did dishes at some point as well, as I said above.  When E got home I spent a couple hours with him before going to work to pick up my pain prescription (500 mg alleve, generic so it’s naprosen), and go talk to personnel about my leave of absence, and to turn in some more paperwork since I’m not back to work yet.  I will also probably change positions once I get back to work, to something that I can sit with, and not be having to lift all kinds of stuff.

I put some gas in the car on my way home, and have been home for around an hour now.  I am wiped out.  I feel like I worked a long shift at work on a weekend with how this is.   All of it combined also seems to have made my lupus flare a bit more, my endo  has been flaring a bit this morning, and my fibro acts up when I get this fatigued/tired.  All of those just add that much more to my fatigue.  I think I will go watch something on the xbox to relax, and then go to bed.  I’ll also probably take some amitriptyline to  help me sleep through til the alarm goes off, that way I get deeper sleep, and longer sleep.

Although I’ve dealt with fatigue like this on and off for a few years now, mostly after my laps for my endo, and when I’ve flared up the few times I have with my lupus before (minor flares), I think this is the thing I struggle with the most.  The absolute deadness my brain gets and the fact that when I get to a point where I’m getting this fatigued/tired, I’m barely able to do anything with my day before I end up ready to sleep for several hours.

I am currently needing to do dishes, but I just don’t want to, both because – well, we all know it’s not the most fun job ever, and because I was flaring earlier in my elbows and fingers (though not my wrists for some reason) and I don’t want to cause that to happen again (I’m also going to take another break from the computer after I type this and read or do dishes). … So I’m here.
Not quite sure what I want to write on right now, just that it sounds better than anything else does.
I’m a bit frustrated right now, and hoping that the rhuematologist will do something about this, but I was unable to get anything but higher dose naproxen earlier. Naprosen I believe is the name. They wouldn’t give me tramadol or anything else, and for some reason NSAIDs cause lupus flares in me. I can’t take them for more than a couple days without my knees flaring up really bad with arthritis pain, and sharp pains in specific areas of my knees. And I’m here with endo flares (though admittedly they have calmed some in the last week) due to not being allowed to be in birth control until the rhuematologist clears me as safe to take something that isn’t going to put me at a higher risk for strokes (probably a progestrin only pill), and with lupus that is raging out of control, though the last couple days have been better for pain, though worse for fatigue. I wish my town was better lit and I had company night walks in the evening or night time after it’s safe for me to be outside. I know that walking can help immensely, as long as I don’t push myself to walk too far. But I have no one to walk with, our warm nights are in the 20′s (it’s around 3 or 4ish my time, and it’s 28 outside), and the lighting is bad, so it wouldn’t be safe to walk around outside after dark. And all of that really makes me sad, because I enjoy my walks, but the warmest part of the day is the most dangerous time for me to go outside.
I hope that I can get in to see the rhuematologist soon, start working on a treatment plan and hopefully help a bit more with all of this.

So I thought I should post an explanation of who the people you see mentioned in my journal are, especially since those I call by something other than Mom or Dad, or the like will have a letter representing who they are. They are also the biggest members of my support team.  Fellow bloggers may join this list at some point as well, and one of them will be mentioned at the end of this list tonight.

Me – As my profile says I’m a 23 y/o female.  I like with several chronic conditions and deal with them daily.  They affect many parts of my life.

E – My husband, my best friend, and someone who I love very very much.

M – My cat, who brings a lot of joy into my life, and who helps me in many ways, even if he doesn’t actually do anything physically for me like a seeing eye dog or something like that.  He is always around, even if he’s not in the room with me, and when I lay down, unless he’s asleep, he will come to me when I call his name and usually lays with me for awhile (if E isn’t in bed as well).

Ja – My younger sister

Jo – My soon to be brother-in-law

Mother or my mom – My mom, who also deals with some of these illnesses, and with who I pass information back and forth.

Mom D – My mother-in-law, who lives in the next town over and is a nurse.

Dad or Daddy – My dad, somone who is a great inspiration to me, and a huge support.

O – my father-in-law, E’s step father

Nb- My youngest sister in law, E’s half sister

Ab – My oldest sister in law, E’s step sister, and still younger than me

Wolfie – A guy I’ve known my whole life, our dad’s have been friends since elementary school.  We are a lot alike, and we are also like siblings in some respects, though our relationship is more like that of cousins.

Jeanne – the writer of Jeanne’s Endo Blog, http://endendoat.blogspot.com/, and someone who I email with and comment back and forth with.  She is becoming a friend, and is also a sort of mentor to me with this whole blogging thing.

E, M and Jeanne are probably the three who will be mentioned most in my blog, though time will tell how true that is.  I’m sure E will be in here at least in casual mention fairly frequently.

I have other posts I would like to get written, but this has been on my mind a lot today, and I would like to get it posted so that others can get the information as well.

My mom and I were talking this afternoon after my doctor’s appointment, and she shared some information she had read (and is sending to me) about lupus possibly being affected by fluorescent lights.  I started thinking about this and it does make sense, at least in those of us who have the photosensitivity, which I very much do, and have for years.  The book she got this information out of is … around 8 or 9 years old, so I decided to do a search online, and see what I could find regarding the topic.  The most reputable link I found is from Lupus Now, the Lupus Foundation’s magazine.  http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=884&zoneid=67  Basically, over long periods of exposure, uncovered fluorescent lights can cause the same issues in people with photosensitivity as the sun does.  This is incredible information for me, because once she told me that, I started thinking about when my lupus started becoming a daily issue for me, rather than a minor flare here and there which didn’t affect me for long.  My husband and I moved into a new home (new to us at least) in September.  Not long after the move (two weeks at most I believe) I ended up heading into a lupus flare that saw me crying when I would get out of bed, and taking huge amounts of whatever pain pills I could get my hands on.  I was in one of what I call my lupus arthritis flares.  Basically I get to where my fingers, toes, wrists, ankles, elbows and knees get so stiff and painful that moving is very difficult.  I came out of that, was fine for a short period of time, and then headed into uncharted territory.  I changed birth controls for my endometriosis (this was mid to late october).  Within a few days of that change, my chest started hurting, I developed headaches, and my blood pressure rose significantly.  I have been off of my birth control completely since the end of October due to all of this.  I went to the hospital once, everything heart related (other than my blood pressure) came back perfectly fine, so they sent me to the doctor I had been planning to see anyway (well, his Physician’s Assistant is the one I see, but I go to that clinic now).  Mark (the PA) started talking to me, getting my medical history, and finding out what was happening.  He quickly realized that the stress from my job (we won’t go there right now) and from hurting so bad over the past few months had caused such tension in me that the muscles in my back and neck tensed enough to pull 3 ribs out of place.  He fixed that, and made sure my husband knew how to put them back into place.  I went back to work that night (I’d been hurting so bad the few days leading up to this that I’d been unable to sleep or move much, and breathing – well that was not a good thing) and ended up fainting.  I’d been put onto door greeter duty since they didn’t want me pulling those ribs back out of place while they were healing (and believe me, I didn’t want it either), so at least I wasn’t at a register when this happened.  I was out for probably just a few seconds, and when I came to and realized I was on the floor, I stood up long enough to grab the walkie talkie, before sitting back down on the floor leaning on something, and tell my manager that I was ill and needed help.  She seemed to assume it was nothing major and said she’d be there as soon as she could.  I was not feeling up to being forceful at that point, so I just said ok.  Luckily one of the higher managers at work happened to be getting ready to leave for the night, and saw me sitting on the floor.  He asked me if I was ok, and I told him what had happened.  He grabbed the walkie and told my manager she needed to get over to me right away, and he stayed with me until it was decided I would go to ER.  My husband took me to ER and nothing came of it but another medical bill.  I went back to work the next night, and had another dizzy spell, though I felt it coming on, and was able to get onto the floor fast enough to keep from fainting again.  One of my coworkers, who happens to be a friend and neighbor, saw me on the floor, and was aware of my health issues that had been going on (the chest pain, etc.) so she immediately got the manager over to me.  This time the manager was there fast enough to see how pale I was, and told me to go onto an LOA (Leave of Absence) until we could find out what was wrong with me and get it treated.  She told E later that night that she was actually sure I was ill now.  Good thing she got there so fast I suppose.  I went back to my PA to get the paperwork done two weeks after this all happened (he was on vacation, and when he got back I was unable to go up until the end of the week) and we did some labs, which had been discussed at my previous appointment, but he threw some more labs in.  We decided it was time to answer the lupus question (which wasn’t as much of a question to me) while doing this, and not surprisingly, all the labs came back fine, except for my ANA, which came back at a high 462, when normal seems to be 0-99 (if someone understands all of this better, please explain).  He ordered some more labs to be done on the blood that was already at the lab, and they came back as even more positive for me having lupus.  Today I had some more labs done that should tell us more about whether my kidneys are involved or not (so far – I’m in the clear for major organ involvement).

And I just really wandered off what I was trying to talk about, though it was all necessary to support my hypothesis that the lighting at Walmart helped cause my lupus to become full on lupus, rather than just being light flares once in awhile, and warning signs.  When all of this started, right after we moved, the Walmart I work in (worked in?) was working on replacing all of their fluorescent lights.  The ones that were there were old and dim, and some were no longer even working, so it was time.  They replaced all of them with new lights, but not only that, since we are heading into winter, they replaced all of them with lights that help with SAD (that seasonal depression).  They are brighter, and they also have more UV light to help combat the sun not being out as much in the winter.  The lights also have no coverings over them.  Well, for me, that seems to have been a huge catalyst.  I am exposed to them 8 hours a night when I work, and with them being uncovered it is similar to being out in the sun for that time.  I don’t do the rash that I get when I’m in the sun too long, but I do still get the other effects it seems.

I will be talking about the rhuematologist who will be treating me when I finally get in to see her, but it seems that I am proof something happens between photosensitive lupus patients and a lot of exposure to uncovered fluorescent lights.  Lucky me!  (by the way, that last part about being lucky… absolute sarcasm).

So I thought I’d start my blog out by posting some links to explanations of each of my illnesses.  I plan to add these to the links on my sidebar as well, but wanted them accessible in my journal.

By the way, I do not know much html, and the site my sister sent me to that had all the things I would be using has been forgotten….. (new computer, so I don’t have my old bookmarks), so unfortunately until I come back and edit it, you’ll be stuck with long links on this entry.

Lupus, my newest (and one of the most dangerous) diagnosis, just diagnosed on Monday:

http://www.lupus.org/newsite/index.html is the lupus foundations main page.                      

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=71&zoneid=9s is an introduction to lupus, and to their “what is lupus” section of the site… more links are available on the left sidebar of this page, with all sorts of information about lupus.  They also have links at the end of each article to more information, some on their site, and some at other sources.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=310&zoneid=9 Types of lupus.  Some of the types listed also break down into other types of lupus, such as the discoid lupus, which, if I’m not mistaken has 3 or 4 subtypes.  I have SLE or Systemic lupus erythematosus.  I also may have one of the forms of discoid lupus.  My rash, called a butterfly rash, and some of the other issues I have seem to point towards me *possibly* having a form of discoid lupus, though I’m not sure on whether I do or not at this point.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=74&zoneid=9 A list of symptoms.  Mine are as follows:  Achy joints / arthralgia, Arthritis / swollen joints, Prolonged or extreme fatigue (also can be caused by my fibromyalgia and my endometriosis), Skin Rashes, Butterfly-shaped rash across the cheeks and nose, Sun or light sensitivity / photosensitivity (I’ve had this as long as I can remember), Raynaud’s phenomenon / fingers turning white and/or blue in the cold, Mouth or nose ulcers (my cold sores start out normally and turn into cracks or ulcer like things on the corners of my mouth, I also have sores that develop in my mouth that I was told fit into this), and an ANA blood test result of 462 when they did the test last week.  Normal on the ANA according to my doctor (I haven’t checked this myself yet) is between 0-99.  As I joked with E yesterday, I passed that test with flying colors!

Endometriosis (which I count as the other most dangerous, because of the treatments for it, and the fact it has the biggest chance of taking my dream of having children from me) is the diagnosis I’ve had the longest, as I was diagnosed in November 2005, after dealing with it since my period started, around January 1999.  Some great places to get information about it are:

http://www.endometriosisassn.org/ the EA or Endometriosis Association

http://www.endometriosisassn.org/endo.html an explanation of what endo is from the EA

http://www.endocenter.org/ the ERC or Endometriosis Research Center                                                    There are also a few books I have read that I recommend are anything by the EA, Endometriosis for Dummies, and Living Well with Endometriosis: What your doctor doesn’t tell you…  … That you need to know.  Dr. Redwine, one of the top doctors in the world from what I understand, has a new book coming out… today I believe, though I’m not sure of the name to include it here, and obviously I have never read it.

Interstitial Cystitis (IC), which was diagnosed during my second laparoscopy (surgery for my endometriosis) in January 2007.  I have non-ulcerative IC. Some places for IC information include:

http://www.ic-network.com/ the Interstitial Cystitis Network homepage.

http://www.ic-network.com/whatisinterstitialcystitis/ An introduction to what IC is

http://www.ichelp.org/ The Interstitial Cystitis Association homepage

http://www.ichelp.org/WhatisIC/AboutIC/tabid/416/Default.aspx The ICA’s explanation of IC.

Fibromyalgia, which I have a diagnosis of from 12/2006.  Some links for fibro include:

http://www.fibrocenter.com/content/home.jsp The homepage for the Fibro Center.

http://www.fibrocenter.com/content/about.jsp Information about fibromyalgia from the Fibro Center. 

http://www.fmaware.org/site/PageServer The National Fibromyalgia Association homepage.

http://www.fmaware.org/site/PageServer?pagename=fibromyalgia The NFA’s fibro info page

Vaginismus, which was diagnosed 12/2006. Some links are:

http://www.vaginismus.com/ A website dedicated to vaginismus

http://www.vaginismus.com/faqs Frequently asked questions about vaginismus, including what is vaginismus.

Vulvar Vestibulitis, which was diagnosed 12/2006  Some links:

http://www.nva.org/ The National Vulvodynia Association Homepage

http://www.nva.org/about_vulvodynia/what_is_vulvodynia.html An explanation of Vulvodynia and Vulvar Vestibulitis