In so much pain...
The kidney people took me off my anti-inflammitories/pain killers. It's been about a week since I've taken any. I didn't know pain until I stopped taking them. Yep, that's how bad it is. o.O My hands hardly move (using one finger on my right hand and two on my left to type). Remind me to bitch long and hard the next time a doctor says I have to stop taking my meds.
So here's the run down of all my pains, for shits and giggles. I'll do pain scales. 10 being the worst, 1 being just a little bother.:
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Toes. (3/10) Well these are not too bad. Swollen, but generally ok.
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Ankles (6/10). They can just jump ship so to speak. They're causing lots of pain and swelling which leads to problems walking.
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Knees (7/10). These little buggers ACHE when I'm driving or just sitting. Also, it's really difficult to get into the bath, sit on the ground or pick something off the floor.
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Shoulders (4/10) - This was hard to rate on the pain scale just because its fairly difficult to "trigger" the pain. Mostly they hurt when I'm sleeping. When I go to change positions when laying in bed, I'll pretty much give up half way there. Oh and things like putting on shirts, putting hair up, etc are VERY difficult.
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Wrists (8.5/10) - These are in competition with my fingers to take the Most Painful award. Rotating them (rolling or up and down) is really realllllly painful.
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Fingers (8.5/10) - I have no idea why this is... but when the pain gets awful in my hands my fingers get itchy. Like not a little itch an unsatisfiable itch. Maybe because of the swelling. I don't know. It'd be real hard to punch someone in the face, so hopefully that doesn't need to happen till i'm back on my drugs. (haha ok, I haven't punched someone in the face in like 10 years, but still you never know!)
Abnormal MRI.. but it's not a tumor.
So yea, went to the neurologist today. He said the MRI of my head shows some abnormalties. He's sending me to yet another specalist for more tests on my brain. I forget what they're called but it seems mainly to be focused on my frontal lobe. I dunno when I see the new doctor though. They're gonna call me.
That was a bit weird. I was really thinking I'd go in there... he'd say my confusion and googly eyes are most likely caused by the anemia. My heart sank when he said there's abnormalties. Although, I've convinced myself that it's the lupus swelling my brain (or parts of).. so hopefully when we get the lupus under control whatever is going on in my head will be ok too.
While we're on the issue of brains... OMG the guy who lives two doors down is totally stupid! I had to call 911 today! o.O!!! Boy was taking out the garbage for me and comes back and was like "uhhh the place two doors down fire alarms are going off and it's FULL of smoke". o.O! I was like OMG what do we do?! So we go over there, look in the window to see if anyone is there. Can't see anyone. We go into his backyard. No one. Boy knocks. No answer. Back to the front door... boy rings the doorbell. No answer. So I call 911, tell them the address and that the place is jammed full of smoke.
So the fire trucks arrive. They bang on his door a bunch of times. He finally answers. Turns out he was "really tired" when cooking something and went to bed. Upstairs. How he didn't hear us knocking/ringing the bell AND his smoke alarm going off is beyond me. But what the hell! There's a little girl that lives beside him. I can't imagine what would have happened if Boy didn't take the garbage out when he did. What if it was an hour later? Or even in the morning? The guy prolly woulda died of smoke inhilation. His place would have started on fire. The place next door then would of course. Little girl and her family, then us. I can't bellive anyone would do that! If you're that fricken tired... don't start cooking and THEN go to bed. Just go to bed!
If I ever see this guy, he'll get a piece of my mind. Dumbass.
Anyway... the biopsy is on Friday. Not looking forward to that one bit. Hopefully it comes out clear and is done without a problem.
We'll see!
MRI, Neurologist, Biopsy, Rheumtologist...
Tomorrow I go for an MRI. The 25th I see the Nuerologist. The 28th I get a kidney biopsy. Then the 9th of August, when all these various results are back, I see the Rheumtologist/Interal Medicine Specalist again. I guess then I'll know how bad things are in my body (or to be positive, good!)
It's not going too well lately though. Symptoms keep coming at me, some new, some old. Every day I wake up thinking "hmmm I wonder what will hurt today" or "I hope today will be a 'good' day" (good meaning painwise).
I'm going to see my sister this month too, for 10 days. We were thinking of planning a little camping trip in the Rockies but we decided against it. What if I were to flare while we were camping? I couldn't imagine. It would be awful. There I'd be without electricity, without running water, without the comfort items we all take for granted... in extreme pain, not being able to do a damn thing about it, while my 'sis would have to do everything. Could you imagine camping with someone like that? It would be awful for my sister.
You know what the worst part about
Lupus is? Not being able to make definitive plans. When ever anyone asks me to do something, go out, go away (you get the picture) my answer is always "I'll say yes now, but when the time comes, if it's a bad day I may not be able to". And that just sucks. I was in Niagara Falls recently. On our last day there we wanted to do this thing where you can walk in tunnels behind the falls. That would have been WAY COOL! Did we do it? No! Why? My ankles and feet were so swollen that I could hardly walk.
Anyway, I'm just rambling. Here's my latest symptoms:
- ankles, knees, feet swollen like they've never been before
- couple days ago my left leg was literally 30-40% larger then my right leg
- Cankle Fleckers *snicker* these are rash like (but no bumps, no itch, just red dots) spots on my ankles (which are so swollen we call 'em cankles)
- I seem to have developed a rather odd cough. I'm not sick, well with a cold. But if I'm laying flat on my back or on my right side, I cough. It's getting worse with every passing day.
- Fingers (as always) are swollen but not too sore, only when I make a fist can I really feel them
I wish this cronic illness was more predictable. I really do. I'd know what symptoms tomorrow would bring. One positive is my brain feels like it's functioning again. I still get confused and a bit dizzy now and then but overall I generally feel like it works.
Thank you everyone, who have been commenting and emailing me with suggestions and well wishes. Without the support of you all, this all would be a lot worse. <3
