Wow, has it really been almost 3 years since I wrote anything on here?
As a little background, I have had Rheumatoid Arthritis since I was 12. Later in life, I was diagnosed with Lupus with secondary fibromyalgia. I'm pretty much an auto-immune nightmare, but I still try to function as much as normal.
Anyway, a while ago (right before Christmas), I posted a "week of lupus" on FaceBook, and a few people said that I should blog it somewhere so that others could see it. So, here it is, a week of living with Lupus:
For the fun of it, I am going to post each day for the next week about what it's like having Lupus. I don't think many people understand how random it can be. So, this is today: (day one): Awakened at 2am with a strange sensation in the hand that was under my face. Soon to realize that it was filled with blood from a wicked nose bleed. Half hour later, back to bed. Woke up to back pain, hip pain and chilblains on my toes (look it up if you don't know what it is) Probably from walking on the cold floor while dealing with nose bleed. Got moving- add stiff neck to the list. Any of it slow me down? Nope- nothing new for having lupus. Sleep total for the night = 6 hours (pretty good!)
A week of what it's like to have Lupus-day 2: couldn't fall asleep. Another nosebleed at 4am. Fell asleep at 5am, then woke up at 8. Weird rash for no reason. dizzy feeling + the sensation of boiling water running down my thighs + my typical joint pain. Sound weird? Not to me. Sigh. Total sleep last night: 3 hours. (Typical)
A week of what it's like to have Lupus-day 3: So, this is my third day of posting about the typical life of somebody who has Lupus. To be clear: this is just normal for me. This isn't a "flare", this is just typical life that most people never see because it's usually not visible.
Ok, so I actually fell asleep at midnight last night...but that lasted an hour. Was too tired and cold to get out of bed. Slept a little off and on. Tried to imagine Dorothy looking at the animals sleeping at Sasha Farm. Started thinking of little Louie the pot bellied pig and how fast his tail wags...that didn't help me fall asleep, but it made me smile. Got up at 6:20, felt like I was running a fever....temp was 97.1. WTF? Not a fever, so off to the shower. At this point, I realize that the new shoes that I wore yesterday took chunks out of my heels. My pain tolerance is stupid and I didn't even know..until soap ran over them. Ouch. Out of the shower- I'm purple from being cold, have hives and feel hot. Lupus, go home, you're drunk. OK, hands and feet were hot from shower, and now cold- they turn almost black (thank you Raynaud's). It's a good thing my husband doesn't shower with me- he'd probably think I was undead and stab me in the head.
Blow dry hair- chunk falls out. Looks like it had a lot of grey hair in it, so I have mixed emotions over it falling out. Start getting dressed and realized that my right knee doesn't want to bend. Go through PT routine to get it working, get dressed and head downstairs.
Typical pain for the day is there (joints, back, hips, some muscle groups). Knee not happy. Burning sensation in thighs still there (better get the liver checked out) and stabbing pain in back (freakin' spongy kidney yelling at me). Off to work!
Arrive at work to super awesome assistant with Starbucks (thanks Emily Ellis Fraley!) Which is good since I only had about 3 - 4 hours of broken sleep last night.
A week of what it's like to have Lupus-day 4: If you haven't been reading these, these are just posts of what my normal life is like. Read 1-3 before these if you really want to, LOL.
Body temp was low all night, so I was cold all night. Jeff wasn't cold, and he's always cold, so it was just me. Fell asleep at about 2am. Woke up at 3:36 sweating like crazy. Nice. Got cooled down, got back to sleep as Jeff's alarm was going off at 5am. Stayed awake until he got out of bed at 5:30. Fell asleep at 6am and slept through my 6:25 alarm. Crap. Body temp: 97.8 - at least it's higher than yesterday. What causes that? Probably thyroid related. Even though I had it removed, it's decided to grow chunks back and screw up my hormones again. Sweet!
As I was putting on my all cotton clothes, it reminded me of one of the things about Lupus that drives me nuts- skin allergies. I am allergic to most perfumes, cloth unless it's at least 95% cotton, acrylic (which means that getting my nails done can end up in swollen fingers if they don't keep them away from my skin), a lot of hair products, most lotions, and various things that nobody would even think of. Oh, and I can only wear gold earrings/nose ring or my body will swell up and reject it (learned that the hard way with a piercing- thought it was infected only to find out it was a reaction to the surgical steel). The kicker is in the summer- I burn and get sun rash, but I've yet to find a sunscreen that I don't have a reaction to that is worse than a burn/sun rash.
Pain is at a fairly normal level today. The only exception is that I woke up with a stiff neck. That on its own isn't bad, but I have a nerve issue in my neck which causes partial blindness in my left eye when I get a stiff neck. If I was smart (which I'm not) I would have brought my heat pack with me to work. Oh well, gives me an excuse to sit with dogs and watch TV when I get home, right? Sure....that's after I go to the store, make dinner, and do whatever else needs to be done. Then maybe 1/2 hour on the couch before bed. LOL
Sleep total for the night: Maybe 3 hours?
A week of what it's like to have Lupus-day 5: Wow, 5 days already? Doesn't feel like anymore than 10.
Since we were up at the Pied Piper working on it all last weekend, we didn't get our tree up like we normally would, so we put it up last night. In hindsight, that was stupid. I mean, what was I thinking moving at all at night? Jeff did put the tree skirt on for me, and at one point looked like he was passed out under the tree. So, I started signing John Denver's classic "please daddy don't get drunk this Christmas". That had nothing to with Lupus, but I just thought I'd share.
So, went to bed about 11:30, fell asleep at a little after midnight and didn't wake up until Jeff's alarm went off at 5am. Didn't sleep after that, but it was nice not waking up. Tried to get out of bed at 6:15. Hips decided that putting up the tree was too much for them and that they no longer wanted to move. Bastards.
Finally got out of bed at 6:40. Stumbled through the shower, knocked my nose ring out when washing my face, couldn't bend over to pick it up. Left it there until later. Started getting ready- realized that I had what looked like zits all over my face. It seemed like a good idea to squeeze the one that was right between my eyes (zit bindi)......that was not a good idea. Not a zit at all, and all it did was cause blood to run down my face. Looked like I got shot. Thought of taking a picture, then remembered that I was still naked. Obviously a new rash, so I slapped make-up on and moved on. Went to put deodorant on (I can't use antiperspirant, BTW, as I end up with plaque like rashes from it) and realize that the rash on my face is also under my arms. Great, no deodorant today. Sorry co-workers.
At this point I think I am ready, but then I remember the nose ring that is in the tub and not in my nose. I stumble around like an 80 year old on meth and finally get a hold of that little jerk. Instantly realize that my grip strength is missing today and drop it down the drain. Fuuuuuuuuuu.......glad I have a couple spares. Sigh.
Off to work I go. Get on the expressway and feel something warm on my face. Crap...another nosebleed. Stuff tissue in my nose and keep driving. Start getting funny looks from people passing me. Decide that the only thing to do is crank up the Christmas music and start singing so that I look like a complete tard when people drive by. Funny looks turn into people laughing, so at least somebody had a funny story about their commute.
Pain level is higher today. Back and hips are very much not happy with me. Liver and kidney seem to be happier today, though, so that is good. Total sleep last night = ~5 hours. Pretty good!
A week of what it's like to have Lupus-day 6: Hey, we're getting close to a week already.
Had a pretty chilled out night. Volunteered at Sasha Farm, went home, ate dinner, did some paperwork, then sat on the couch and watched SNL Christmas until I was told to go to bed.
Actually fell asleep and stayed asleep for 4 hours. Woke up, then fell asleep for another hour. Seems like after that I'd wake up feeling good. Nope. Woke up to my entire body hurting for no good reason. And, by "hurt", I mean that it was hard to even move.
So, off to the shower (if you haven't noticed, that's a habit of mine). Figured the warm water would help me out. Take a nice deep breath and realize my lungs feel like somebody started a campfire in them. To be honest, it's been a few months since I was smacked around with Pleurisy. I've yet to have the bacterial version, so I'll just wait it out. It's weird the things that people with auto-immune diseases tend to get. I have a feeling that a lot of people get Pleurisy, but it never manifests to a degree that they view it as anything but part of a cold. However, with Lupus, nothing is ever simple. Your body over reacts and tries to kill off everything- including your own cells.
So, today I have general pain everywhere and my lungs feel like they are being exfoliated with a cheese grater. Not the best day I have had, but definitely not the worst. At least I didn't get another nose bleed today, so there's that.
Total sleep: about 5 hours (pretty good!)
A week of what it's like to have Lupus-day 7: We've finally made it a week!
I did a whole lot of nothing last night. Was just tired and worn out feeling. Dogs appreciated me sitting on the couch with them. The only thing I actually got done was ordering a crate liner for the dog's crate. I also complained that I ordered a leg lamp and Amazon lost it, so I had to order it from the Christmas Story Museum store, which ended up costing less. However, I don't have it and I'm angry. Why? No good reason at all.
Went to bed at 10:30. Fell asleep at about 12. Woke up after having a really weird dream. Really shouldn't have watched Fargo last night. Felt sorry that I sent Brad (my BIL) through a wood chipper. Fell back asleep and pretty much stayed asleep other than the part where my snoring disturbed the dogs and they started growling at me. I must have sounded like a badger or something....
Woke up with a headache behind my right eye (it's still there). It's the kind that you get when your sinuses are really stuffed up. The problem is that mine aren't. I hate headaches more than anything. It's the one pain that I have yet to figure out how to deal with. My body is all like "hey! your knee is swollen and inflamed, I'll just ignore it" but with headaches, it's all like "Code red! There's a headache! All pain on deck! We're taking her down for the count!" I hate headaches. And, this one has no reason for being there. I can only assume that it is blood gathering up there so that it can let loose on my way home. I think I better prepare for the great nosebleed of 2012.....or I'll just let it run all over my face and take pictures of people's reactions as they drive by. One of the two.
Still tired and achy this morning. Not really sure what my general pain level is today because the ONLY pain my body will pay attention to right now is this freakin' headache. Even a nice warm shower didn't help it. (My day just isn't right without starting off with a shower). I thought about drilling a hole into my head, but I only own drill bits for wood and metal, none for skull. Sigh. I need to work on that. I'll add that to my Christmas wish list, right up there with a new hip.
Total sleep last night: About 4-5 hours. Not bad.
Hope you enjoyed my week of living with Lupus, I know I didn't! Hehe