Angel of Darkness

Chiro in the morning.
Back is only better in that I haven't had a major paralysis-like episode again. Mind, I've only had two since it began. I'll wake up and be completely unable to move. And I know some people get sleep paralysis, but I never have... not until the back problems started and the other mild-paralysis-like flares. Hence my being pretty sure it's involved.

So, uh.
I'm expecting x-rays to be called for.
Sigh.

Everyone has memory issues sometimes. They can't quite remember something. They don't remember until too late. They need things to refresh their memory, etc. That's pretty much normal. Some people have it worse than others, but that's the way it generally works.

My memory has been worse lately. Actual gaps in memory.

I introduced myself to someone at my friends' place on Saturday. The girl gave me a confused look and replied, 'We met at the Superbowl party.'
And it wasn't even a click of 'Oh! I remember now!', nor did she even look familiar. I spent hours that day hanging out with these people, I remembered other people, but not her. There was a complete and total blank. Even remembering back at the party now... no recollection of her. Absolutely none. But she was there, apparently.

And even though my sense of direction is bad, it's gotten worse. I had to ask my dad how to get to a restaurant we've gone to dozens of times, right near our house (which means I also drive by it all the time). I honestly couldn't remember the way to the place. Usually if I've been somewhere 2-3 times, I remember fine how to get there from that point on. Not so, lately. I've been needing to use the car with the GPS more and more.

It's... unsettling, to say the least. To know that you knew something at one point in time, but to not even have the most mild of recollections of it. Not even that vague sense of 'I think I remember something about that...'.
Fortunately, it hasn't been happening with much and only, I think, began in the last few weeks.

I dunno if I should just see if it passes and it's just a strange thing happening now... or if I should go to a doctor about it.

Chiropractor did adjustments today. It's never taken so much to adjust my neck, which makes me go bleah since that's the part I like least. It freaks me out how they adjust the neck. I <3 adjustments because they're what got me through the week when my knee was really bad, but the actual process is usually freaky.

Except when the knee adjustment requires they crack your toes. That makes me giggle (not from ticklishness, but from amusement).

Woke up Tuesday morning in the pre-dawn hours, at least twice, in so much pain that, had I been properly capable at the time, I likely would've been screaming. As it was, I whimpered a lot and forced myself back to sleep. I couldn't even resituate myself because, wonderfully, I couldn't move.

So, yeah. Not a good morning.
I have higher hopes for Wednesday. I have to, I guess. The pain just gets so bad.
I see the chiropractor again on Friday. Then likely again the following week. He wants a few visits before deciding if I get x-rays or not. I'm praying he can fix it without because x-rays means it's something serious and serious means specialists and that if I get this job, I have to tell them I can't start or... I do what I'll likely do. Work anything and grit my teeth against the pain.

Upside to all this? My pain tolerance is higher. When my back isn't hurting like crazy, I don't really notice other pain anymore. Or that's the lyrica working. But if it's the lyrica, why isn't it also helping the back? Hmm hmm. Questions questions and why couldn't the back pain have come when I wasn't trying out a... new... medicati- fuck. Well. Would this even be possible from the Lyrica? After being on it for... 2? weeks?

If I wake up tomorrow and my back still hurts, it will mark a week -- a week -- with this problem. I dunno about you, but I think that's way too long. Especially with the pain levels.

I live every day with pain. Which sounds really shitty, but the truth of it is that after a while, you tune a lot of it out. Still, the pain is there and sometimes it can get bad. I've had broken limbs. I've had surgery. All big pain things. But this thing with my back hurts more than any of them. The only way I can sleep is ambien + percocet + heating pad.

Last night, on my drive home from a friend's place, I came very close to driving myself to the hospital. The pain just got so bad that I was in tears. And it's not the only time I've contemplated the urgent care, or a hospital. When the pain is so bad that all I can do is sob and beg... whoever may be out there ... to make it stop, I know something's wrong.

This rant came out to... nothing. Kinda worthless, overall, I know. Fuck.

Got massage today. Back still hurts, a lot. Pain is def. centered around the spine. I'm also getting areas of numbness/tingling across my body that also correlate with difficulty moving. I know it may just be paranoia, but this is upsetting me and freaking me out so much. I hurt worse than I have in a very, very long time. And I hurt a lot.

I baffled the masseuse because when she learned I had fibro, she was asking which areas are worst, if I needed an all-over massage... I admitted that the pain of the fibro, even during a flare, is something I've just gotten used to. But the back pain... It's just too much. I sleep to avoid having to deal with it.

And I'm scared. I know it's probably nothing, but my spine is where the pain is. I keep saying I did something in my sleep, but even I've never moved so much in my sleep as to cause my entire back to hurt for an entire week. And not this bad. Plus, my legs had been getting worse lately. Worse than they've ever been.

Now I struggle to walk when my back is really bad. Sometimes to even move. I woke up the other night and I couldn't move without extreme effort. Almost like moving through deep water, but even worse. My limbs barely responded and it wore me out to just lift my arm. And then tonight, my left leg and arm were numb and walking to the car, I kept stumbling because my leg wasn't responding to the most basic cues of walking.


Hopefully I can see a chiropractor, but without insurance... either I have to get disability or work full-time again. When my mom and grandmother brought that up tonight, I came very close to breaking down crying on the spot. My grandparents are old-fashioned and think nothing of 'giving up all chances of a social life' for working, but that's not all it is. I was always sick. Always tired. Everything was so difficult to do and I dragged down everyone around me because I always felt terrible. And then I had people who wanted to spend time with me, but I couldn't and then they'd be upset and I'd feel upset, so I'd force myself to socialize... I would cry before work sometimes. Or on the way to work. I'd cry because I hated facing each day. I hated working and then coming home and having to choose between whether I'd eat or get sleep. My weekends were spent sleeping and doing chores. I hated my life so very much. Right now, I don't like living with my family and I want back out... but not if that's the only way.

Just the thought that I may have to work full-time again has me in this stranglehold of depression. I feel like I can't breathe. I don't want that. I want to work, yes, but I don't want to do it in this condition. I don't even work now (besides small projects, chores around the house) and I struggle most days. I want this job at the bakery, yes, but not full-time.

And add to that the underlying terror that my back is something worse than pulled muscles or something out of alignment and I... I do not feel good. I do not feel confident. I want to crawl under my blankets, go to sleep, and never wake up again. I feel sheer terror and I can't talk to anyone about it.

Went to cake decorating class.
Pretty much sat there and just watched.
My back hurts too badly to even stand up for long.

Left early, so I missed on seeing one technique. The pain got so bad.
Driving home was bad because my legs began to hurt real bad.


And not only do I have sharp pains in my lower right abdomen, but now my lower left.
I'm figuring it's prolly ovaries vs. kidney, but can't be sure. Neither is very good. Unfortunately, no more insurance for me (company caught on that I'm older than 18 and not attending school full-time).

Now I guess I have to find a full-time job.
Fuck.


EDIT:
Forgot to add... Dunno if it really is just a pulled muscle or not in my back. Pain is centered around the spine and I'm having increasingly more problems with movement in general. When it's really bad, it's hard to move at all.

I've been wanting to update on how I'm feeling, but have been too emotional at times to be able to give a coherent update that won't just be full of whining and/or ranting. No one needs that; myself included.

Right now, I'm in the midst of a major fbro flare. It's been going on for at least a week now. I say 'major' because most of my flares have encompassed two things: extra sleepiness and weakness. I'd just sleep and rest a whole lot more. And that, from what I gather, is very normal for a fibro flare.

Unfortunately, this one is different. In this flare, I have:
- More insomnia, so I sleep less
- More pain, all over
- More muscle spasms/twinges
- More nausea
- IBS (Irritable Bowel Syndrome)

That's all I can think of off of the top of my head, but we can add a couple non-fibro things to it:
- Bad cough (I do mean bad: coughing until I vomit, coughing up blood, etc) -- could be either a severe asthma attack, pneumonia, or something else
- Back problem

As for the back problem... I hope to see a doctor or masseuse or something soon. The pain is severe and I'm having more difficulty moving. Also, earlier, I got up to go to the bathroom and the whole time... I could not feel my toe. It was there. I could see it there. But I could not feel it. Never had that happen before.


I feel, as you can imagine, like complete and total shit. Unfortunately, there's so few people I can talk to. I have class Thursday evening (2 hour cake decorating class) and then on Friday, have been invited to a friend's for dinner and video gameage. I'm scared of going to both. I want to, badly, because I don't socialize enough... but what's my health going to do?


This is why I've been so... fragile lately. I put on a strong face and call up every ounce of willpower and stubborn in me and I power through each day. I wake up at a decent time. I tidy my room. I help with laundry and dishes. I help my mom keep my siblings in line. I run errands (my mother wakes up, sits herself at a PC, then plays some flash game for 10+ hours straight), etc. Unfortunately, this turns into making me feel even worse, but I have to continue hiding it, which has mademe quite fragile emotionally.

Back, right now, is priority.
Then legs.
Then sinuses.

I guess getting a new 'script for the thyroid meds would also be pretty high up there.

My temperature is still inconsistent. 100, then 99, etc. And I go from cold to burning up so rapidly that I got up to put on a tanktop under my tshirt. Swift and easy change while in bed. My family has no concept of knocking, so I can't go topless if I get too feverish, or I would.

Also, I think I may have a rash of some kind. I itch all over, but I can't tell if it is a rash or not. I've been scratching constantly while lying in the dark, which, uh, doesn't help the whole deal. Makes the skin red anyway. And yes, I have bathed recently. Tuesday evening, in point of fact.

I'm a little paranoid. I was around a new group of people on Sunday and they spoke of someone they know having chicken pox (IIRC). I've never had it before, which is why this is a valid concern. But there's no welts or anything.

Guess I really should see a doctor tomorrow.

Maybe.

Symptoms:
High fever
Unable to keep body temperature even (hot/cold very easily)
Hurt all over, intensely.
Skin very, very sensitive.
Nausea.
Bowel discomfort.
Sore throat.
Severe asthma attack.
Weak.
Head explodey.


Sounds like classic flu. Likely is. Either way, I feel like death. Or, more accurately: I feel like death forgot to come get me and I've been left to suffer.

Inspired by papel_luna, I'm going to start trying to track symptoms. I'd love to be able to give a solid daily report, but realistically: it's best if I start with weekly. I need to get better at identifying symptoms first. What I really need is a good chart. Or some sort of checklist. One of the things I deal with (from fibro or whatever it is I have) is that I have "brain fog": I forget things easily and I can't always recall stuff. Which sucks, especially since I used to have a near-photographic memory.

Anyway...

( January 27th, 2008 )


That's all I can think of for now. I know there's more. A lot more.
Hopefully, if I can keep this up properly, I'll get better at recognizing and tracking symptoms. I'm also still hunting for a good tracker/journal/checklist. If you know of any, please let me know! :)

I'm beginning to wonder if I've been overdoing it with my shoulder.

Over the past few days, the muscles have been getting tighter and tighter. Even the basic exercises at physical therapy are harder. And they can tell, too, I think. Maybe that's why today's session was shorter. I keep doing what exercises I can bear to try to stretch the muscles, but it isn't really working. On Thursday, the therapist had to massage my bicep for a time before I could do much of anything.

Is this normal? Or have I made some mistake? Pushed it too far...

I don't know. All I do know is that I haven't slept well in days. It seems once a day, my body will shut down and I will sleep... but I wake up feeling even worse. I can be exhausted, my eyes unable to stay open... yet I can't sleep. The arm is too uncomfortable. Not even my parents' bed, with the way it can raise up, helps. Before, that was comfortable (most people, post-shoulder surgery, need to sleep in recliners or beds like that) and I could sleep.

Now? Nothing is comfortable. I can't even lift my hand to my face without the muscles protesting with every inch.
I'm going to try what exercises I can...


Damn me.
Damn my stupidity.
I shouldn't've pushed myself. I should've held back and let the therapists push me. They know best. But no, I was dumb and I've become too good at ignoring the pain. At first my body made me pass out when I went too far, since I didn't notice the pain. Then I didn't notice the urge to pass out. I fucked up.
I feel so stupid.

I stopped the birth control about a week ago. I've been getting a lot of spotting while on it and I can't afford the refills right now. Nevermind the complete lack of sexual contact of any kind.

Seems the nausea isn't related to it, though. I'm still getting it. I know it could still be in my system, so I'll wait a bit longer, but so far: bad sign.

I ate really well for the first few days after my surgery. At least three full meals a day, etc. Now I'm back to the one meal a day... if I'm lucky. I can keep down fluids, fortunately, so I tend to rely a lot on things like Slimfast shakes to get nutrients into me. I'm not sure what could be causing the nausea, but it's now been going on since about mid-November. Guess it's something to add to my symptom list.

Things like ginger ale help a bit. Ginger root capsules really help, but I hate taking them (they leave an icky taste in my throat).

And I was having such a good night, too!

This is my third visit, even if this marks a week since the surgery.

I'm doing really, really well. The therapist said that the swelling is pretty much gone (it still swells up, but the steady swelling is gone). So we did some stim therapy today (I've never had my muscles react so strongly to it!), along with the usual. Ultrasound (which I've been learning more and more about how that works and I must say: wow!), massage, and the exercises.

The exercises are getting easier and easier to do. I still have a fairly limited range of motion (I can reach out from the height of my shoulder... no higher. And it hurts to reach all the way out), but the range I do have is pretty strong. The therapist said no more sling unless my arm is really tired/sore. And no more tucking it up against me: I need to let it hang at my side at least.

I've been having to constantly remind myself of this. :)

I asked him about going back to my water fitness class. He knows the woman who teaches it and says that it'd probably do very good for me. So I'm going to start going again on Thursday. This makes me very happy! I'm going to wait until I'm finished with therapy to go back to yoga, but either way... I like the thought of being back on track.


Oh!
I was a good-Leigh today and checked on my appointments.
Friday is my followup with Dr. V. and the 31st is my next appt with Dr. D.
I'll attempt to schedule an appointment with an ENT shortly into February.

Not many people read this, but I mostly keep it for record-keeping purposes. So I can go back as needed and track changes in symptoms, etc. Which means I need to get better about posting regularly.

The surgery went fairly well, as far as I'm aware. They didn't really talk to me afterwards and my follow-up appointment is later this week. My mom keeps remembering bits and pieces of directions I was given: thankfully, they gave me a sheet with fairly thorough instructions.

1. They wouldn't knock me out prior to IV insertion. Apparently, however, getting older has benefitted me. My veins are closer to the surface of my skin, so she was able to find a good one and get it in on the first try. It wasn't good, but it wasn't terrible either.
2. I had to be given the maximum safe dosage for sedation. The sedation was so they could "block" my arm: basically they paralyzed it for the day.
3. The sedation made me sick. Nearly vomitted right before I was put on the operating table. Eugh.
4. Right after they began the anesthesia, I couldn't breathe. Nor could I talk to tell them this. I'm not sure if that was a side effect of passing out or what: need to ask Dr. V.

I have developed a latex sensitivity. I have rashes in places where there were latex bandages, tape, etc. Not very fun. We forgot on Friday and put on normal bandaids... Had to buy new, latex-free ones today after giving the incision sites air for a while because of the rashes that developed. Yick.

Physical therapy is going alright. I've got more mobility in the arm than I expected. Problem is that I'm used to being more limited by tension than pain. But it's the pain now and it sneaks up on you. I've nearly passed out... well, on a daily basis. I don't sleep well, either. It's either my arm is comfortable and I can't sleep, or I'm comfy for sleep and my arm hurts. Generally, I end up falling asleep due to exhaustion.

So there's the state of the arm. Everything else is on the back burner right now.


EDIT:
Forgot...
Vicodin works for me again. At first I thought it was a higher dosage than what I've been given in the past, but it's not. Yay! This is a very good thing. It still doesn't work as well as, say, percocet does and certainly doesn't last the full 4 hours... But it DOES help, which it wasn't having any noticable effect for a while.

I'm out of my ambien and have to wait until I see Dr. D to get another 'script for it. Also out of my Synthroid, but have to wait on that also: had issues with my last internalist's office and have decided I refuse to go there ever again.

List of things I need to do:
- See ENT (also: call neurologist I saw in KY and cancel the ENT appointment they setup for me)
- Find and see new internalist, get new synthroid 'script
- Research getting an IUD
- Talk to someone (ENT? Internalist?) about all the antibiotics from October-January.

( Whining and TMI )

So, since October, I've ended up on the following antibiotics:
- Cipro
- Zithromax
- Some other I forget the name of
- A cough medicine / antibiotic
- Amoxicillan

5. In a span of almost 3 months... That's a bit too much, I'm thinking. It seems like every other time I see a doctor, they decide I need them.
"You look like you could use some antibiotics."
"I think some antibiotics will help you a lot."

I need to see an EarNoseThroat doc soon (due to my deviated septum / chronic sinus infections), so I think I'll bring it up with them. I'm also going to mention it to Dr. D (my rheumy). There's gotta be a reason for it. They DO help me feel better: I find I'm more clear-headed, have more energy, and just a general heightened sense of "well being".


I'm on an 8-week course for lowering my Effexor dosage. 37.5 three times a day for two weeks. Then twice a day for two weeks. Once a day for two weeks. And finally: every other day for two weeks. So far, no ill side effects. We'll see when I take the next step down in a week and a half and so on.

The shoulder surgery is January 15th. I'm feeling a bit nervous. I need to go in before then for a couple more x-rays, but eef.
I need to get a refill of my tramadol. I keep forgetting to call Dr. D's office. Maybe they'll be open on Monday. ;.; Bad me.

Lastly... I need to see a neurologist. Get my lumbar area MRI'd to see if THAT'S the problem with my legs. Honestly, the more that things are examined and I think about it, the more I'm sure it's from that fall I took in October of last year. My legs hurt so bad afterwards that I called someone to come over to keep me company. I just hurt so bad that I couldn't be alone (and in the realm of me hurting... that's pretty intense).
Had a bad day leg-wise today, but I've come to expect those so... it went alright, overall.

I just finished taking a bath. As I got out, I began getting tingling and mild muscle spasms on the left side of my body. The entire left side: from the top of my head down to my feet. Every 30 seconds or so, it seems that side of my body spazzes out. Tingling, muscles jerk slightly, my eye wigs out...

I'm not sure if it's a passive seizure or what.
Called and left a message on my mom's cell.

I saw my orthopedist today. Dr. V is absolutely awesome. The best orthopedist I've seen since Dr. Thomas back in Maryland. He's charismatic, nice, has a good sense of humor. He started the visit with good news (the MRI of my neck was good) before moving on to the rest.

Surgery on my shoulder on December 19th. Arthoscopic. Largely to clean up any damage, etc, in the shoulder, and to diagnose any further issues. There's always the possibility of further surgery after that, but we're hoping that he'll be able to straighten it all up in the one surgery. I'm excited, in a sense. This shoulder has had constant pain and weakness for three years. In a matter of months... it could be better. Oh man. :)

Not looking forward to the day of the surgery. IVs = ick. Being knocked out = double ick. I don't like the feeling of passing out from the gas, but I can't handle the insertion of an IV while conscious. Even so. It's outpatient, so I'll likely end up coming home, settling into bed and watching TV after it. ;)


Also, the nausea and intermittent bleeding still continue. The nausea got really bad tonight. I thought I was going to vomit. It's not too bad right now, which is good. Sleeping is hard to do when you feel that sick.

Seems it may be that my body can't handle the type of birth control I'm on. Femcon. I didn't know there were multiple kinds and people didn't fare well on some. So I looked up the one I was on before that I had no issues at all with: Estrostep. I've got an appt in December with the gyno, but I'm thinking I'm gonna call his office and see if I can speak with him instead.

( Behind a cut to save innocent eyes. )

So, the theory that the tendancy of my hands to shake badly being due to blood sugar may be out.

They're shaking rather bad right now and I clocked in at 128. Which is actually a bit high for me, but I had ice cream about 2 hours ago.

I'm still going to get it checked out, just in case, but it seems that maybe hypoglycemia isn't the cause. Hmm.