Skin of My Teeth

Oh yeah. Barely here.

I can't believe I made it through the whole day. I worked a full day PLUS saw a private client, then came home... and went to my MRI less than a mile (haha that was a funny paraphasia so I had to leave it) I mean hour later.

Agh! Just lost some hearing in my right ear and got tinnitus. Getting better. At least it's brief when it happens.

So... How did I make it through? Several times I didn't think I would. I went to a school to check in on my favorite students, then I drove to a different building for a two-hour meeting, then I left and stopped at a park between those locations to chat on the phone and rest, then I went back to the first school to check in on a different student... who was at PE, dang it... so I went back in to see my favorites and stayed with them through most of the rest of the school day until my migraine got too bad, then I went to my office to lie down on the floor (and chat with my friend on the phone again), then finished up my work and went to see my private client, then went home and ate dinner, then went to my MRI appointment, and then came home--here I am. Like that run-on sentence? It was a run-on day.

Sometimes I was so weak, I didn't think I could stand. I had to concentrate very hard to drive safely. I definitely prayed a lot.

Lying down at lunch time helped a lot. Unfortunately I forgot to eat--I wasn't hungry, so my stomach didn't remind me. I didn't have the judgment to realize that I should eat regardless of my hunger level. So that probably didn't help my energy level.

But I enjoyed talking to my friend on the phone. She has been my best friend for almost 16 years, and I love her dearly. It was so good to talk to her. We made plans to get together this weekend.

Oh, my spinal headache continued throughout today. It's an odd Catch-22: if I'm standing, it's not bad but then my legs shake and get dangerously weak; if I sit, it's excruciating but I don't need to worry about supporting my body. That's not an easy choice! I did stand for part of my meeting this morning, until I was afraid I'd collapse--that would have made quite a splash with the team.

When I got home from work at 5ish, something small made me cry for a while. It was hard to stop. I just sobbed until I was all sobbed out. But my tears were not done for the day.

At my MRI appointment, the technician stressed me out a little. I was there only for an MRI with contrast, and she wanted to do both with and without. I told her that I thought only with. She said that the order was with and without, and that their radiologist might not be willing to read the "without" films I had brought from a different radiology place. I had brought that because my neurologist told me to! She said they'd need to compare them. And she knew it was from a different place--she told me to change places because this place has a stronger machine than the other place. I wouldn't have minded doing both kinds of MRIs, but the technician warned me that my insurance might refuse to pay, since the other films with less than two weeks ago. I told her that I could not pay. She got all defensive, saying that she was only giving me the information, blah blah blah. I told her that I wished I had known, because I would have just gone back to the first radiology place (or talked with my neurologist about it). She lacked sympathy. I had her check the order, because I was pretty sure it just said with contrast. I was right! So she just did with. Whatever, if their radiologist doesn't compare them I don't care, because Dr. Gabby just wants the "with" ones anyway.

That wasn't why I cried, though. I had commented that the important thing is that I get the films and have the radiologist read the ones with contrast, because that's where the lesions will apparently show up. As the technician was getting ready to inject me with the contrast (and was being nice again), I guessed she was trying to make conversation. She asked what lesions I meant... MS? I said yes. She asked if I got the diagnosis recently. I said yes, on Thursday... and burst into tears. Her assistant rubbed my arm. The technician said she was sorry to ask, that she was just getting medical history. I told her it's fine, that I cry all the time lately. Then I guess she felt sorry for me, because she quit asking questions and apologized genuinely. Her voice was kinder.

I got my MRIs done with only one series repeated. It wasn't my fault, though. I was so still! I was drowning on my saliva sometimes, but there was no way I was going to swallow. It was 8:00 pm, and I wanted to go home. But apparently my crown posts were messing with the contrast, and she did one series three times before giving up and calling it good enough. She said she got enough information, whatever that means. Saw lesions?

A few times I thought I was going to cry during the MRI, but I kept it together by thinking of boring things. First I recited the Greek alphabet. It's very familiar, like reciting the days of the week for most people. My Latin teacher used to drill us on the Greek alphabet, forward and backward. She was a freak. Anyway, after I recited it (1 minute down, 44 to go), I decided to go through and see if I could think of English words that sound like or contain the Greek letters. Like delta is a river delta. Nu sounds like new. Et cetera. That didn't take long. I couldn't think of words for 11 of the letters. Ugh, that didn't take long. Then I decided to make words with the names of the letters, like epsilon would be silo, lion, pile, etc. That was harder, so it kept me busy for a while. I was proud of myself with iota... oat! I felt smart again, which made me happy, so I didn't feel like crying anymore. I did, however, feel like sleeping.

So now I'm home. I'm tired. I took an Excedrine Migraine pill, which doesn't seem to be working. I don't think I can take one tomorrow, because they have caffeine--common sense says that would alter my reaction time and therefore the test results. I could be wrong, but I'm not taking the chance that my test could be canceled. I'll bring them with me, though.

Wow, I am super excited to see my friend this weekend! But for now, time for bed. Fingers crossed that I can sleep all night. Last night I woke up several times and went back to sleep every time except when I woke up at 5:30. So I've been up since 5:30 am. Honestly, I'm not even sleeping enough for a regular person, much less someone with MS. No wonder I'm falling apart.

Hanging On... with White Knuckles

I'm still hanging on to the roller coaster car. I rested this morning then got up and swept the branches and leaves off the deck. That was hard, but I enjoyed the exercise and fresh air. I even swept the front walk and laughed when the grounds crew came by 10 minutes later. Well, I'm sure it was good for me to be up.

This afternoon my headache has been worse. I suppose I should call it a migraine. I've never had one before, but I think that's what it is. I persuaded my friend to take me to a movie, so that I could get out of the house. I brought a pillow so that I could keep my head as low and supported as possible. The movie was good, and I enjoyed it, but all that sitting didn't do good things for my migraine.

On the way home it was so bad, and I begged my friend to stop at the grocery store so I could get some Red Bull. I ended up finding a natural drink that had as much caffeine as Red Bull but without all the chemicals. It's a Jamba energy drink. It's great that it was natural and didn't have incomprehensible ingredients, but it didn't taste any better than Red Bull. I guess caffeine tastes disgustingly.

So now I'm lying flat in a darkened room, feeling jittery from the caffeine. My headache is mostly gone.

The movie I saw was called One Day, and parts of it made me think. The takeaway from the movie was not to let opportunities pass you by and not to be so wrapped up in things aren't important that you waste years of your life. One quote that resonated with me was, "Whatever tomorrow brings, at least we had today."

Whatever tomorrow brings me, at least today I can walk and talk (mostly ;) and work and do things. I'll feel better, and I'll feel worse, and I should prepare for that, but I should probably focus mostly on today.

I was also thinking on the ride home how short our time on earth is, and that most things we do here don't really matter. Or at least, most things I do don't really matter. Sure, I'm making a difference in the lives of little children, and that's great. But the time I spend watching TV, using the internet, etc. are just wasted moments. I need to remember why I'm here, who sent me, and the limited time I have. It's like I'm away at college. I need to learn as much as I can while I'm here and not get caught up in partying. (Of course I don't really party... That was a metaphor.)

And when I worry about paying my mortgage or buying all the medications I'll need or keeping my job so I have medical insurance, I try to remember that God provides for the needs of the lilies and notices the sparrows. He will take care of me if I have faith.

I'm Special Needs

There were several things I thought of and wanted to remember in the hours I laid awake, and, unsurprisingly, I have forgotten all of them. But I remember one thing I wanted to remember from last night. Picture schedules.

Picture schedules are a series of pictures to help with a routine. For example, one on a child's desk might have pictures of buying lunch, putting homework folder on teacher's desk, hanging up coat, and putting backpack in basket. Or you can have one for toiling routines: pull down pants, sit on toilet and wait, use toilet paper, pull up pants, wash hands, dry hands, throw paper towel in trash. You get the idea. They are awesome for people with limited ability to understand or remember what to do.

The problem for me is not with understanding what to do. Remembering is a big problem. And being organized and efficient.

My evening routine: change clothes, wash my face, floss while it dries, put on acne medicine, wash my hands so it won't dye my clothes, brush teeth while it dries, put on moisturizer, dry the water from around the sink.

This is what I do lately: change into night clothes (good start, way to remember that), go into the bathroom, pick up my toothbrush, put it down, turn on the water, think, wash my face, pick up my toothbrush, put my hand on the soap dispenser, stop (whew, haven't brushed with soap yet), put down my toothbrush, put on acne medicine, open the medicine cabinet, close it, wash my hands, open it again and get the floss, floss teeth, brush teeth, go to bed, feel tight and dry skin, get up, put on moisturizer, back to bed.

Thus a 10-minute routine becomes a 20-minute routine. 

(These astounding powers of cognition are also applied to driving, by the way.)

Ah, the wonder of Red Bull and ibuprofen. My headache just went from an 8 to a 4. Red Bull tastes disgusting, but I'm considering it like medicine that I have to take for now, just like if I had to drink cough medicine. Bottoms up.

So today I will make a picture schedule for my morning and evening routines. Morning is not as bad as evening, but I do have some trouble with makeup. I forget what comes first, and I waste time thinking it through logically to figure out whether I should be using mascara or foundation at this point (the ladies know the right answer here) and whether I've forgotten something altogether.

It's a good thing cognitive strategies are second nature to me. I think some people would cry if they needed a picture schedule to get ready for bed. I save my crying for other things.

Oh! I lost some hearing and had tinnitus last night, lasting about 30 seconds. It was in my left ear. Brief and hopefully not foreboding.

I think I'm on my own this morning. My friend went to work. My sister is in the shower right now, so she must be leaving within the next 30 minutes. There's no other reason she would be awake. It's not even noon.

I want to get out of this house! I'm sick of being stuck on the couch. I'm sick of feeling crappy. I'm bored and lonely.

Rough Night

I went to bed at 11:00--I need to go earlier, but I end up talking with my friend every night. Last night she was saying that it's hard for her to believe that I have MS, because I look fine. I can't remember what I said, but I ended up crying. I cry when I think about it. It's so scary.

I fell asleep easily, but I awoke at 4:30 and had trouble getting back to sleep. I briefly slept from 7:00-7:20, but then my roommate's shower etc. noises woke me up.

I have a crushing headache.

My back hurts--upper back, like between my shoulder blades.

The pins and needles and semi-numbness are bad in my feet and also affecting my legs. It feels like someone is grabbing my left foot.

It's hard to think straight.

Rolling Downhill

I've been reading information from the National MS Society (great website) off and on this afternoon. It's fine sometimes and upsetting sometimes.

When it talks about managing problems that I haven't encountered, I feel anxiety and fear. And when I noticed that many of the people in the bright, happy MS people pictures were in wheelchairs, I became very upset. I cried. I was just thinking that I don't want MS.

When it talks about managing problems that I have now, I am calm and extremely interested. I want the advice. The article on sleep disturbances was great. It looks like I'm already doing some things right, like using visualization. I'll try others. And my instinct that I don't know if I should accept pharmaceuticals (if they're even offered) seems to have been a good one.

Aside from that, I had an alright day. I was pretty tired despite lying on the couch all day. I did get up and make dinner--pork chops, mm. Although I can now sit up for more than 20 minutes, I get a spinal headache when I do. So I've been lying down all day. I did drink an ounce or two of Red Bull when it was really bad, and I've taken ibuprofen all day.

I really wanted to take a walk today, because I've been cooped up in the house for three days now. I'm so bored. This evening I went for a walk around the block with my sister and friend. Unfortunately I overdid it. We slowly walked for about 20 minutes, and I was having trouble keeping moving after the first 10. I arrived home and collapsed. I felt so sick. I think I will not exercise again until I'm out of this exacerbation.

Maybe coincidentally, maybe not, I've been struggling with spastic muscles this evening. My calves are the worst, feeling half clenched all the time and sometimes fully clenched. Quick spasms. It's not terribly painful, just very uncomfortable. I got my friend to massage my calves for a while, which helped. Then I tried massaging myself, because my right leg needed more, but that tired out my arms. That makes me laugh.

I'll be tearing my hair out tomorrow, because I don't have to work due to power outages in the area. I really wanted to go to work tomorrow, to take my mind off the MS, to see some little people that I love, and to give me something to do. I don't want to be bored, because I'm afraid I'll get depressed. But I can't do anything right now!

Faith or Denial?

I think I'm in a better place today. My back is still expressing its outrage at being assaulted on Friday, but it's getting better. I can sit supported for 15-20 minutes. I can walk a lot better.

I woke up many times last night but was able to go back to sleep, so I did get enough rest. Well, it seems like there's never enough. But close enough to enough. :)

I'm tired and weak today, but I think my brain is cooperating a little better than yesterday. I'm struggling with spelling sometimes. I was stymied this morning on the word biscuit. I kept typing buis... no that's not right... bius... buis.. finally had to sound out the beginning of the word. Good thing my mom taught me phonics!

I kind of had to laugh at a thought I couldn't get out this morning. I was telling my friend, "I emailed my parents to ask if there are any neurological or autoimmune disorders in our family. I heard from my dad, and he said in his family there are none. But um... my um..." A few seconds went by. I was going to talk about someone else... My friend finally prompted, "Your mom?"

Oh brother.

I've misunderstood my sister a few times. She said, "It fell over," and I thought she said, "I fell over." I was like, "Are you okay??" Yesterday she said something was off and I thought she said it was on. And I get VERY tired when she talks, because she talks so fast. I have to work to understand her. That kind of concentration is tiring.

And I'm making typing mistakes, which is unusual for me. Like lo instead of ol in a word. Looks like my brain is getting hit right now. The pins and needles have not been bad in my limbs.

I decided I was ready to watch the patient information DVD from one of the drug companies, called "Inside an MS Exacerbation." It was a two-minute animation showing the immune system damaging myelin and oligodendrocytes. Boo. My friend watched it with me, which was nice. I want the people around me to be interested in it and learn with me.

I'm trying to be careful about what I read online. I know that there is a lot of misinformation on the internet--when I look up any topic in my profession, 80% of the information is wrong or incomplete. I amin (I'm leaving that as an example of the typing mistakes I'm having to correct frequently) imagine it's the same for other professions. With MS being so poorly understood in general, I think it's safe to assume that reading online information will be useless.

I am similarly disinterested in online MS communities, because I wonder if you would see people with worse outcomes in those. Wouldn't people with good outcomes be out living their lives?

When my [young and clueless] home teachers came over Thursday night, one mentioned that there was a sister in the ward who has been living with MS for 30 years or something, that I should meet her and talk to her. I politely nodded but internally had a strong negative reaction. I do NOT want to meet her. I don't want to meet people that far along in it. I don't want to think that's what I'll become. And I don't even know what her situation is, and I don't want to know.

I re-read my patriarchal blessing, which I knew brought up health. Actually, it brings it up three times, and my blessing is not all that long. Reading that, I was thinking that I would be fine, but I also know that I've misread my blessing before. Sometimes we interpret things the way we want them to be. But I did feel better.

However... I know that denial is one step in the grief process. Some people get stuck in it for years. For example, the parent of one of my students accepted the disability when the child was six years old, despite having been diagnosed while still in the womb. The child did not receive some things that would have helped her during that time.

Faith and hope are good, and I'm holding onto them. But then I start to think, "You know, I'm fine. It might even just go away."Another reason it's hard for me to accept the diagnosis and move through the grief stages is that a couple of people around me have questioned it, thinking maybe I have Lyme. Every time other people question it, I do somewhat.

I wonder if I should talk to a shrink or something. One who is a member of the church would be nice.

So although I'm not sure I'm ready to meet people with MS, I do think I'm ready for patient education. I'm ready to talk about it.

Like I said, I didn't want to google multiple sclerosis. But I did want information, so I googled multiple sclerosis patient education. I found this website: http://www.nlm.nih.gov/medlineplus/tutorials/multiplesclerosis/htm/index.htm

My friend watched it with me. It was pretty basic information, which I knew from google searches over the past few months. But my friend hadn't been learning with me during that time, so it was probably good for her.

And I googled multiple sclerosis and hearing loss, because I did have drops in my hearing and tinnitus a couple of times... I want to say around March or April. Maybe May. It was short-lived (less than half an hour each time) and always went back to normal, but it was certainly weird. I found that about 6% of people will have hearing loss, but many more have hearing dysfunction due to lesions in the auditory pathways or cortex. Hm. We'll see what the evoked potentials testing shows. I'm really glad they're doing that. I'm not at all scared to lose my hearing, though. Losing my vision would be more devastating.

I haven't cried today. That's good, right?

Better!

I'm doing so much better! Sure, my back hurts, but I can do stuff now. I just helped bring in the stuff from the deck--getting ready for the hurricane.

And I got a mosquito bite for my trouble. Mosquitos love me!

Still Here

Last night I went to bed at 10:30 and woke up at 2:00 am! Again! I don't know why I wake up between 2:00 and 4:00 every morning. I'm still exhausted. I don't have racing thoughts, just regular thoughts. It's becoming really frustrating, because I'm tired enough as it is. I tried and tried to go back to sleep. And I did! Around 4:00 am. I woke up a couple of times but kept going back to sleep until 7:00. That is so awesome. I was oddly proud of myself for being able to get back to sleep.

Then I felt awful, like having the flu. And of course my back hurt. At 9:00, my friend sent me upstairs with orders to sleep more. I was discouraged and depressed. I wanted to give up. I sort of dozed... and then I slept! Not straight through, but off and on until noon!

Oh, I felt so much better. I woke up feeling clear headed, with a little bit of energy. Then my phone started buzzing. It was my bishop! He was pulling into my parking lot. Yikes, because I hadn't showered since yesterday morning, but I really needed some company. I was happy he called.

We talked for a long time. About an hour, I think. I told him what has been going on, and we talked about some other stuff. I love my bishop. I felt a little guilty that he spent so much time with me, because I'm sure his family misses him. But talking with him was so good for me.

People ask me what I need or what they can do for me. I don't know what I need, and I don't know how to ask for it even if I did know. I think I just need company for now. I need someone to talk to and cry with. This is a scary time for me. I don't want to be in a wheelchair. I don't want to go blind. I don't want to have MS. I was wondering why I want company when I have my sister and friend here, but I realized that what I need are people who aren't in it. My sister and friend are going through their own grief stages.

But I am seeing good in this situation. I'm close to the Lord right now. I want to go to the temple so badly, but I don't know if I can. It was so rough last time. Maybe if I have a temple buddy.

Other good things are coming from this, too. I guess I'm the carrot in the boiling water, not the egg. ;-)

Today was the first time I felt depressed about it. I've been tearful and hopeful and scared and grateful and many things. Sometimes just numb. Shell-shocked. Getting the news and having the lumbar puncture back to back was probably not the best thing. Or maybe it was. It's all so real now. I have to deal with this.

Well, I am healing from the LP, slowly but surely. I sat up for the first 10 minutes the bishop was here. Record breaking! Then my back was hurting too much to sit, but at least I didn't have the electric shocks. I took a shower--it's nice to feel clean now. I'm just getting through. I'm glad I don't have a lot of work to do this weekend. I have to write one progress note, which I'll do this afternoon if I remember. I keep forgetting stuff today. My mind is not very organized.

Frustrated

I had something I wanted to write about but forgot it before I could tap into my blog. I'm so frustrated!

Slippery Thoughts

My thoughts slip away when I try to hold onto them. I'm using compensatory strategies and still forgetting things as quickly as I think of them.

Better and Worse

I'm having a tough recovery from the LP.

On the positive side, I can tolerate sitting up for up to two minutes with only minor shocks and pain. Then the pain increases and I have to lie down. This is making it hard to drink enough water to replenish the 11 or 12 tubes of fluids I've lost in the last two days. Oh and my headache is gone, knock on wood.

On the negative side, I feel like I have the flu. That achy, spinny-head, weak, shaky, hot/cold feeling? That one. Hopefully it's not meningitis--that's the last thing I need. I wanted to check my temperature but can't find any of the three thermometers we should have around here.

I want to die. Or tear my skin off. I guess my nerves are going nuts.

The Cushion Is Deflating

One thing my friend from work said is exactly what I have been thinking. I think I've expressed it on this blog before: I was functioning at such a high level before that I had room to lose skills and still look normal to people.

When I notice myself a little wobbly, I recognize that it's a big decline, because I had that awesome gymnast's balance before. I've never slipped on ice. Seriously, my balance was legendary. Um, not anymore. But only two people around here have known me long enough to know that.

My work friend was specifically talking about my memory and language skills. She knows I am brilliant. Am? Was, maybe. I don't know what I am now. We were joking that I was lucky I had a cushion, but she knows how much I miss my former intellect. Not that it's completely gone, but it's not what it was. Hopefully that comes back or at least improves. I told her that I'm trusting my brain to keep being smart, to find workarounds. I believe my brain can make new connections around the damaged areas. Reallocate space.

Go Big or Go Home

And I went big. First caffeinated drink was a Red Bull, oh boy. I just took a few sips, and it made my headache go away! Hopefully it's gone for good, but I do have the can in the fridge in case it comes back.

Yesterday I spoke on the phone with a friend from work, Candy, for over an hour. She is the only person I'm going to tell. I sure do love her. She just had a personal tragedy, so we're both in interesting places in our lives. Maybe turning points. She's considering a new career and wondering if/how God will answer her prayers about what to do. I'm so blessed that I can answer that question, because God answers my prayers all the time. I know how it's done. So I explained it to her. And of course we talked about my MS.

She is concerned that I have enough help at home, that I'm not the one doing things for everybody else. And she wanted to know how she can help me at work. She said she'll help me make sure no one finds out. We work at a super gossipy, nasty place, and I absolutely do not want those witches finding out.

I wasn't sure how else she could help me, except to remind me to pace myself. I tend to go full force (go big, see?) until I hit a wall. So I could use reminders not to expend all my energy in the morning. She was thinking she could walk the kids down the hall to my room or have an assistant do that. That's a really good idea, actually, because walking down the hall absolutely could use up the energy I need to work with the kids when we get there.

And she made me practice the phrase, "I can't do that." Some days I might not be able to do my high-energy dog-and-pony show, and she can step in.

We cried and laughed together, and it was just really nice to talk with her.

And I answered some emails asking how I'm doing. Now I've told my story in whole or in part so many times that I do know what I've said to whom.

I emailed my best friend, Jessie, who lives in another state, and just said I have MS. I suppose we'll talk one day next week. I only speak to her once a year or so, but every time we talk it's like we just did yesterday. We're just too busy with our lives to talk more often. She has a whole bunch of kids. I'm not sure how many, but I think it's 8 or 9.

I need to email another friend. I sort of raised her kids for a few years, and I'm pretty close with the oldest. I took care of that child from one month to four years of age, and now she is 11. Old enough to be hurt that I didn't visit this summer, and I always visit. She emailed me once or twice, and I told her I've been sick and can't go up there (5 hour drive) unless a friend drives me.

That's why I didn't go to the beach this year. I LOVE the beach but couldn't go because a. I was afraid I'd get hot and really sick, and b. I was afraid I wouldn't be able to get back.

I hope I can ski this year! I was planning to teach skiing, but I guess I won't. Well, we'll see how I'm feeling then. My friend from work thinks I should stop freelance interpreting and just do my full-time job and my private clients. I really need the money, but I guess it will all work out.

More!

I remembered another medication I will be taking. Nuvigil. It's to help me stay awake and alert all day long--give me more energy. I'm looking forward to that.

I am no better than I was this morning. I still have a headache. Maybe I'm worse, because my back really hurts now. I can stand or lie down (which means I can lie down, since standing makes me tired), but I cannot sit. Sitting gives me the electric shocks, pins and needles, and pain through my back.

I hope I wake up feeling better. Actually, I hope I can sleep! I asked my sister to buy some Red Bull for my headache. I don't drink caffeine, so I suppose a little will go a long way. We'll see.

More about the Neurology Appointment

So... Dr. Gabby is great and hilarious and brilliant. Hilarious in an absent-minded professor way. Her office looked like a paper tornado hit it. She had papers everywhere! All over her desk, shelves, chair, and exam table. And books, too. And junk from drug companies. I didn't mind, because it reminded me of the offices of some of my college professors. And I don't care about the way someone (or their office) looks as much as the way someone is.

And she is smart. All over the place, but smart. Just what I hoped for! I wasn't valuing social skills as much as intelligence, but she's nice, too. After she told me point blank that I have MS and I started crying, she gave me a hug and promised to take really good care of me and make me feel better.

Like I said, she read my films and spotted two classic MS lesions--that means areas where my immune system has destroyed a whole bunch of nerves. Enough that together they show up as a white spot on the MRI. Just a few damaged nerves here and there don't show up. Dr. Gabby could tell that my body has been working on this for a while.

Looking back, I've had at least two attacks that I know of.

A year and a half ago, I had cognitive issues (fogginess, confusion, forgetfulness) and was tired all the time. It lasted about a month. That was after my gallbladder surgery. It took me a month to heal (after they said two weeks max), and then the next month was maybe an MS exacerbation. Probably from the stress on my body.

Three years ago, I had weak muscles with poor stamina. Having to put the car into park at red lights because I couldn't maintain pressure on the brake pedal... that sort of thing. And sciatic nerve pain. I went to a chiropractor (WASTE OF TIME AND MONEY), and they used an electrical stim thing on my lower back. That made it worse. So bad that I was having trouble walking. And I was tired all the time. I remember that my chiropractor appointments were around 5:00 pm, and I would be ready to fall asleep as I was leaving. After I stopped going to the chiropractor, I slowly got better.

So I guess maybe those were MS exacerbations.

Back to the neurology appointment...

It was kind of a blur. I remember her checking the feeling in my feet. Having me track her finger with my eyes. Touch tool then nose then tool then nose. Stand with my eyes closed (I sway). Walk with my feet touching, heel toe heel toe. I was bad at that. Disappointing given my gymnastics background. I could walk on the balance beam with my eyes closed!

We talked about what MS is and how it works. We walked about the medicines and tests I'll need. We talked about how the medicines work.

Besides the lumbar puncture that I had today, I also need two more MRIs: cervical spine and thoracic spine, both with contrast. The ones I had last week were without contrast. Dr. Gabby said that I need both, but with contrast is the more important one, because that's where she'll see the lesions. But she warned that spinal lesions are more difficult to spot than brain ones, so even if I have them, they may not show up. I have an appointment for the MRIs on Tuesday.

And I need an evoked potentials test. Auditory, visual, and sensory, I believe. I'll have electrodes on my head to measure my brainwaves. I guess they'll measure my processing speed for various stimuli. I'm not worried about that one--I'm geekily looking forward to it. It will be on Wednesday.

On Thursday I'll see Dr. Gabby again to review all the test results and make plans. So far I know that I have to start taking Vitamin D because it does something for MS. Low Vitamin D can precipitate an exacerbation. (Amazing that I might have trouble thinking of the word spoon but can bust out a word like precipitate--word retrieval problems are truly random.) And I need to take a lot of B12, which helps nerves develop. I definitely wants some of that!

I will need to start taking a drug called ACTH, which I think is only while I'm in an exacerbation. Again, the visit was kind of a blur. I'm supposed to call and see if my insurance approves it (it's expensive, of course) and also set up a time to be trained on how to inject myself with it. Should be fun times.

And I will need to start taking at least one of the ABC drugs. They slow the progression of the disease. Sign me up.

And I will keep taking gabapentin and maybe increase my dose. OH, and I told Dr. Gabby how I went off Dr. Dummy Barry's directions to take 600 mg at night and instead have been taking 300 in the morning and 300 and night. She said that's perfect!

I think that's everything.

Oh my gosh. I'm soooo tired.

Happy Spinal Tap Day

I made it through. The procedure went fine, with very little pain. I had some pins and needles in my left leg, but that's not exactly out of the ordinary for me, so I didn't even say anything. I was shaking with terror and prayed the entire time, which helped me feel better.

The recovery seems to be worse than the procedure. I had a nasty headache for a few hours, which is better now that I've been lying down for a while.

I want to drink, because that will help my body replace the cerebrospinal fluid. But I sort of can't. If I sit up, I have electric shocks in the area around the puncture. That's not enjoyable. And pain starts going down my legs. I think my nerves have seriously retardified (yeah, I used the R word... and verbified it... so sue me), because of that stuff and because when the lumbar puncture doctor marked me with a pen, it felt like a needle stick! It's like my nerves were overreacting. Calm down, it was just a pen. His fingertips felt like needles, too.

Anyway, it isn't that bad. When we're talking pain scale, I'll go with kidney stone 10, gallbladder attacks 9.5, and post lumbar puncture 7. Um, maybe the headache was an 8 for a while. Glad that didn't continue.

Drinking... hilarious. I sit up to take a drink (ouch, shocks), lie down, and it comes right back up my esophagus. Darn hernia. It makes me laugh.

A friend from church drove me home and later came over to bring me yummy bread and jam. That made me feel better!

More

I couldn't continue last night. I was handling it fine and didn't even cry when I told my friend and my sister. But around 9:00 pm I began to cry and had trouble stopping. My newly assigned home teachers came over around 10:00 to give me a blessing... I sort of wanted to say never mind, because I was ready to pass out around 8:00. I didn't end up going to bed until 10:30 or 11:00, but I woke up several times during the night and couldn't sleep any more after 4:30. I can't believe that! I was (am) exhausted. Why can't I sleep?

Crying + exhaustion = headache. This sucks. I feel like I could fall asleep any second, but apparently I can't!

I guess I'll take a shower now. I still have an hour until I leave for the hospital, but I have a feeling I'll be in slow motion today, just because I'm so tired. Darn, I can't eat. I feel nauseated.

I'm going to have a lumbar puncture today, aka a spinal tap. I'm nervous about it and hope I don't get the shooting-down-the-legs pains or a spinal headache. The impending hurricane only adds to my nervousness, that I won't be able to get the follow up treatment I need. Or that we have to evacuate while I'm supposed to be on bed rest (I think you have to lie flat for 24-48 hours afterward). I really don't think those things will happen, but there's always the what if.

OK, now I'm really going to take a shower.

Diagnosis Filled In

Multiple sclerosis. "Lots of scars."

My gut feeling was that it was MS, but somehow it still surprised me to hear the neurologist say that's what it really is. She listened to my symptoms and knew that's what it was. When she glanced at the MRI, she immediately saw two "classic" MS lesions, one of which was rather large and sitting right in the memory area--frontal lobe. The other one was in the temporal lobe, which probably explains the language processing difficulty sometimes.

Bleary Eyed

I've been awake since 3:00, and I'm finally giving up and accepting that I'm not going to be able to sleep more. I don't know why I woke up, but I couldn't go back to sleep because I was warm, my back hurt, I had bad reflux, and I had a lot on my mind. Work stuff. And then health stuff, when the paresthesias began--it felt like tiny bugs would crawl a short way (maybe a centimeter) then jump to another spot. That was on my legs. But it only lasted 15 minutes.

You know when you wake up too early and feel nauseated? When that started, I realized that sleep would not be mine.

Sooo.... I should be good and pooped for my doctor appointment today.

Yawn.

Today's Stats

Sensory problems:
-Pins and needles: 8--they're pretty much everywhere today. Fingers, back, tongue, feet, legs, and... between legs
-Hypersensitivity: 7 but I kind of asked for it. Aside from the nasty hour after I took a bath I would have given it a 1 or 2
-Paresthesias: 1
-Numbness: 8? Not sure how to rate that, but it was pretty miserable.



Motor problems:
-Gait: 3--on the balls of my feet unless I work to walk heel-toe
-Sore muscles: 3 (still taking ibuprofen for my back) - I have noticed that if I don't walk much, I don't have problems with this. Another trigger is using my laptop on my lap... maybe the heat.
-Fine motor: 3
-Weak muscles: 4

Cognitive problems:
-Language processing: 1
-Memory: 2

General problems:
-Fatigue: 5
-Balance: 2


I tried taking my second dose of gabapentin earlier today than normal. I took the first one at 7:30 and the second one at 1:15. I still dipped low around 3:30, but the low maybe didn't last as long. And I got super tired at 8:00, which would be right as it's wearing off. Since taking this medication I've been going to bed late, like 11:00, and I'm usually not that tired. I think I might have a paradoxical reaction to gabapentin, which is supposed to make you drowsy. It seriously does not for me. I think it gives me more energy. Ugh. 9:00 and I'm falling asleep! But I think I liked the energy spread today better, so maybe I'll try it again tomorrow. And ask the doctor about it.


What a strange day.


Tomorrow I will meet Dr. Gabby! Fingers crossed that she's SMART.

Crazy Confirmation

My back was hurting so much (stupid period) and couldn't be controlled by ibuprofen. Normally I would take a hot bath to relax the muscles... Well, I got fed up and went ahead and took a warm (not hot) bath. Bad idea.

Now I'm shaky and the nerves throughout my body are CRAZY. Hypersensitive? I don't see how you can call it that when there's no stimulus. It's like they're firing on their own. Ugh. I hate this feeling!

Cue Foreboding Music

Things took a turn for the worse last night. My pins and needles increased in my legs around 8:00, and they were quite bad by 10:00, when I was trying to go to sleep. They were about a level 6 and going down the backs of both legs and onto my feet. It felt like someone was squeezing my feet. But when I did fall asleep, I only woke once during the night, which is typical for me.

This morning I had a training meeting that lasted four hours, which was nice and cool (cold, actually) and where the chairs were lightly padded. I know that I'm asking for trouble if I sit on an unpadded metal or plastic chair--I'll have sciatic nerve pain or pins and needles. Well, apparently it didn't matter today, because not only did I have pins and needles (not really pain), I lost feeling in both legs and the bottoms of my feet. I got up and walked around during breaks, but it didn't help. So I'm not sure that sitting was the problem or if it would have happened no matter what I was doing. The numbness was so uncomfortable and distracting, because it wasn't like it all went numb and stayed that way. It was in and out of numbness, almost like pulsation or waves going through my legs. That was new and anxiety provoking.

I also noticed that my fine motor was not great. My handwriting was messier than usual, and I couldn't seem to hold the pen correctly. My thumb kept ending up under my index finger.

And I am so sensitive to pain. As part of this training we had to practice defending ourselves from people who are trying to hurt us. My partner would grab me and I'd have to use the right techniques to get away or restrain her. Every time I pulled out of her grasp on my wrist it really hurt. Luckily she didn't actually grab but just laid her hands on me when we practiced getting out of a choke hold. Gosh.

The numbness did get better during the last hour of the meeting, or at least it stopped feeling like it was pulsating and going in and out of numbness. I ended up with tingly pins and needles down the backs of my legs, especially the right, and numbness and a a feeling of pressure on my feet, like someone was holding them.

Oh, I also have had numbness and some pins and needles in the tips of my fingers all morning.

Gosh, I just remembered one more thing. I had pins and needles in my back. Never had that before.

I hate it when new things happen or symptoms worsen, because I don't know what to expect--I don't know how bad it's going to get. It makes me feel anxious or scared. If this is MS, I can see why anxiety is one of the symptoms. You never know what your body is going to do next.

Humans Are Amazing Beans

Human adaptability is really amazing. Sure, there are some growing pains during transitions, but steady suckage becomes tolerable somehow.

I've learned to avoid heat. No baths. Showers not too hot. Don't put on a sweater as soon as you feel chilly. Say something IMMEDIATELY when it gets warm at work.

I somehow don't mind too much that I have pins and needles, numbness, etc. in various body parts. I only feel anxious when it spreads to new areas. But then I get used to that.

Memory and language problems do get me down. I guess I value my mind over my body. My intellect figures significantly into my self-concept. But they're not as upsetting as they were.

One thing that's hard to remember is to ration my energy beginning in the morning. Once I'm already feeling tired, it's easy to remember, but I need to improve at heading off the crushing fatigue of the afternoon.

Connections

Rest helps. When I'm crashing in the afternoon, I can rest up and be able to do some things in the evening.

Heat makes it worse. No baths--makes my nerves nuts. And I wilt quickly on a hot day.

My nerves are VERY easily compromised. I get pins and needles easily and lose sensation quickly. I have to be careful how I sit, and sometimes I can't find a position to sleep in that doesn't leave my legs numb.

I wish I could figure out why sometimes my memory is shot and other times it's fine. It's been good lately, knock wood.

Today

I slept well. I worked a full day (mostly sitting in workshops and meetings) then saw one private client.


Sensory problems:
-Pins and needles: 4--in right and left feet and lower legs. Just remembered that the pins and needles were creeping along the bottom of my right foot last night, which is new. Usually it's in the heel and down the side, sometimes across the top. At this moment it's down my right ankle and around the foot; it's also in my left calf (lateral) and alone the bottom of my foot. Hm, also some on my left lateral ankle.
-Hypersensitivity: 3 
-Paresthesias: 1 (so far--evenings are when this happens, and it's only 6:40 right now)
-Numbness: Right outside heel. My fingertips are partially numb--yucky feeling. And the bottom of my left foot (ball of the foot) is partially numb).


Motor problems:
-Gait: 4
-Sore muscles: 2 (still taking ibuprofen for my back)
-Fine motor: 1
-Weak muscles: 4

Cognitive problems:
-Language processing: 1
-Memory: 2

General problems:
-Fatigue: 5
-Balance: 1


I noticed that I'm really crashing between 2:00/3:00 and dinner time. I'm wondering if the timing has to do with medication? Gabapentin's half life is 5-7 hours, and I take it between 7:00 and 8:00 am. I'm planning to beg Dr. Gabby to increase my dosing to three times a day. Fingers crossed.


Hm. Now the pins and needles are all through both feet. Ugh. Need to take my medication. Oh, it's also in my right arm and hand... mild. But mild was how it started in my feet. Sigh.

Yesterday

Let's see if I remember...

I think I slept okay. Woke up cold a few times (our AC settings are unpredictable). Worked all day then went to Target then to one store in the mall then to the grocery store. I was having a lot of trouble walking after work. It seems like my body is DONE by 3:00 and I decline swiftly after that.

Sensory problems:
-Pins and needles: 2, just some in my right foot
-Hypersensitivity: 2 :)
-Paresthesias: 2, a few "something is crawling on me!" moments on my left leg, some random weird itches on my right thigh
-Numbness (why didn't I have this before?): Right outside heel. My fingertips are partially numb--yucky feeling.
Motor problems:
-Gait: 5--dragging my right foot, tripping myself, uneven gait
-Sore muscles: 3 (realized that this might be because I've been taking ibuprofen for my back pain since Sunday)
-Fine motor: 1
-Weak muscles: 5

Cognitive problems:
-Language processing: 3--wow, several times I typed the wrong word in emails and even a whole sentence that made no sense. Scary. Proofreading is critical for me.
-Memory: 2

General problems:
-Fatigue: 6
-Balance: 2


I found out that gabapentin loses potency if you cut the pills and don't take them within a day or so. I've been cutting more than a week's worth! It's a pain to cut them every day, but I will.

Good Day

As you know, I did NOT get enough sleep, but whatever. Just one 6-hour night isn't going to kill me.

No work, since it's Sunday, except the work I do at church. I interpreted three hours with one or two breaks during the second hour. The first hour was the worst, because my brain was dumb sometimes, and my right arm hurt a little. But I got better during the last hour and a half.

I sat on my butt the rest of the day. But I wasn't totally wiped out, which is how I usually feel after church.

I loved yesterday's rating scale, so I may stick with that format for a while.

Sensory problems:
-Pins and needles: 2, just some in my right foot
-Hypersensitivity: 2 :)
-Paresthesias: 2, just a few "something is crawling on me!" moments, both legs

Motor problems:
-Gait: 2
-Sore muscles: 3
-Fine motor: 1
-Weak muscles: 3

Cognitive problems:
-Language processing: 3, had some problems while interpreting and while reading
-Memory: 1

General problems:
-Fatigue: 3
-Balance: 3--Lost my balance a few times today, such as when I turned to put something in the trunk of my car and had to grab the car to keep from falling. And I had a lot of trouble with balance early this morning, when I was trying to walk with only a few nightlights on in the house.

Things are looking super good today, hm?

5:00 am? This really couldn't wait?

It's 5:30 in the morning. I got up at 5:00 because my back is (present tense) killing me. It's not a new symptom, though, just my period. This is not good, because I know the way my body works. I took ibuprofen ten minutes ago, so around 6:00 I'll have little enough pain that I can sleep again. But I have to get up at 7:00. Or I could just stay awake, but then I'll be ready to crash by 9:00, which is when church starts. Basically, I can't win. For now I'm bored, tired, and in pain. Not a great start to the day.

OK, I'm done whining. Let's review yesterday:
-Plenty of sleep.
-No working... only activity was going to the store in the morning for my friend to look at camcorders. I planned to go to the pharmacy but got sick and couldn't. Diarrhea. Boo.
-Sat on my butt all afternoon and evening researching camcorders online with my friend. Do you know that there are 600 million camcorders on the market? That's a fact.

Today I'm thinking a rating scale 1-10 is the way to go.

Sensory problems:
-Pins and needles: 2, just some in my right leg and foot
-Hypersensitivity: 2 :)
-Paresthesias: 2, just a few "something is crawling on me!" moments

Motor problems:
-Gait: 3
-Sore muscles: 4
-Fine motor: 1
-Weak muscles: 5

Cognitive problems:
-Language processing: 1
-Memory: 1

General problems:
-Fatigue: 4
-Balance: 1

As you can see, I had a great day yesterday! Of course, I didn't do much. Whatever.

So far today, I have pins and needles in my foot and leg. That's not good if it's this noticeable so early in the day, because it only gets worse. I was having balance issues when I got up and went downstairs just now to take ibuprofen. I wonder if that's because it was so dark. I wonder how much I'm relying on vision for balance.

Ah, that's it for now. Hm, 5:53 and my back is feeling better, right on schedule. I'm getting tiiiiiired. Maybe I'll try to take an hour's nap before I have to get ready for church. Oh, yeah, feeling it in my bones now.

Bad with the Good

I didn't have to work today. Hallelujah!

I got 8 hours of sleep and woke up with my brain feeling clear and active. And as an update on my former sleep problems, they have not been an issue for several weeks. I think it really was a temperature problem, that I need it cool to sleep. I don't think it's related to my [diagnosis here please].

My limbs were not so cooperative. I was clumsy because my muscles were sore, with that lovely "I worked out hardcore yesterday" feeling. Both arms and legs, upper and lower parts of both, bilaterally. Even my fingers are sore!

I sat around for most of the morning before taking a shower and getting ready. I went to the mall, to my favorite makeup store, where I slowly wandered the aisles for an hour. I planned to go to the pharmacy and pick up my gabapentin refill, but unfortunately I was too tired and sore. I just went back home.

I sat around all afternoon and evening. Whenever I get up, like to go to the bathroom, I feel like I have poor control of my limbs. Like I have basic control but not fine control. Hard to explain. I have to use a wide stance to walk down stairs, because my body is leaning forward too much and my legs want to go to fast or something. They plunk instead of stepping.

Oh, I played the piano today, some baroque and classical music. I didn't have the control I usually do, which was frustrating. Sort of like my legs, my fingers wanted to go too fast and uncontrolled sometimes, but other times they were behind where my brain was, like they were stuck to the keys. And my arms got sore from holding them up in position. Yes, frustrating.

So the lows today are with motor control and soreness.

The highs are with:
-Cognition: still having memory issues, but not as bad as it gets some days
-Sensory: very little pins and needles, no hypersensitivity
-Strength: although I was sore, etc., I don't think my muscles were terribly weak. I often have to put the car in park at red lights, because I can't maintain pressure on the brakes that long (I know, for a whole minute). Today I didn't have to do that. And it wasn't as hard as usual to open the sliding door to the deck.

Creepy Crawlers

I think I mentioned that I sometimes (seems always in the evening) feel like a bug is crawling up the back of my right thigh and occasionally my left thigh. It happened again tonight... in my left calf and ankle!

Yup, new spots. It was up my left inside calf, then a few minutes later down the inside of my foot from my ankle bone down. Not under my foot--it stopped before that. Just like an inch or so.

And I'm barely able to walk right now, because my legs are so weak. It's like they're not listening to me when I tell them to move, and I have to concentrate on moving them. Stairs are especially difficult, because I can't really pick up my legs. I stubbed my foot trying to go up two stairs to the bathroom.

Shoot Me Now

I'm so weak and hypersensitive! Yeah, going out and doing more things when I'm tired did not help.

I'm walking funny. I walk like a stroke victim, with one leg not bending right or something.

I'm ready to fall asleep. But it's too late for a nap and too early to go to bed.

I'm miserable.

Still Not Great

I'm tired this morning, but my pins and needles and hypersensitivity (I guess I'll call it that now) are behaving pretty well.

Although it's not pins and needling yet, my right foot is definitely numb in the area I thought. I tested it with a push pin. The skin is numb, but just under the skin is very sensitive.

Last night I was sooooo hypersensitive. But at least I didn't have the feeling of a bug crawling up the back of my thigh, which had been happening every night for about a week. Creepy!

Mmm... want to sleep. Getting more tired by the minute. But I have to see a private client and then interpret for a friend's HR appointment.

Is He Right?

Forgot to add before...

When the radiologist sat down to talk to me before the test, he had me describe my symptoms. As I began, he asked, "So you're having this MRI because of MS?" I stared at him. He amended, "Or to screen for MS?"

I hope it's something else. I hope it's something less serious. But I don't know what it could be.

Long, Hard Day

I woke up tired. After eight hours of sleep. I know: how is that possible?

So I was sore and tired. I noticed that my foot has less pins and needles in the morning, and it increases as the day goes on. Anyway...

I had my MRI today! Actually three MRIs: cervical spine, thoracic spine, and lumbar spine. This took two hours to complete. I laid in one position, with little movement, in a narrow tube, for two hours. Two... hours. My butt fell asleep an hour in, which was NOT comfortable. My arms were also losing sensation. It was overall not great, but I think I fell asleep (or came close) during the thoracic series. I was kind of half asleep during the cervical series, letting my mind wander, and I was scolded for twitching and moving my arms. I knew I couldn't cough or swallow, but I didn't know I couldn't move my arms. Ugh. That added about 15 minutes to the time. Oops, my bad.

No shots today, because no contrast. Yay...

I will see my new neurologist, Dr. Gabby, next Thursday. What happened to Dr. Sami, you ask? Well, Dr. Danny had initially referred me to Dr. Gabby, and the neurology practice's secretary told me that she will be leaving the practice next month. She convinced me to take someone else. I spoke with Dr. Danny yesterday about something else (he called me at 10:00 at night!), and he said Dr. Gabby is the one. Apparently several doctors are leaving that practice because it's "going in a different direction," but she's only moving up the road. So I can move with her, I guess.

After the neverending MRI ended and I got the films, I raced home to grab my church bag and a snack, and then I raced down to a church building about half an hour away. I was trying to make it there by 2:00, so I could be done by 4:00 and beat traffic. I had trouble while I was there with weakness. It was hard to hold my arm up for even a second. I was sitting most of the time, so that was good. I was really tired, though.

I made it home, only to realize that I had to type a report for work. Boo. I laid on the couch and typed a record-breaking two-hour report. My brain cooperated. My body is the problem today, with the fatigue, weakness, and haywire nerves. Yup, I'm having the haywire nerve tingles. The radiologist today called that hypersensitivity. I'm such a sensitive woman.

Rough Day

I've already cried today... and not about the doctor.

I'm having such a rough day! I got plenty of sleep, probably 8 or 9 hours. I went to my friend's work to help her move her stuff into her new office. I carried a box of books, which was a bad idea. I thought I could do it! Well, that used up all of my energy. I cried when I finally made it into the building, dropped the box at her office door, collapsed on a couch, and my friend demanded to know why I hadn't gone back to hold the door open for her. I had been holding it for her (while holding the heavy box), and she had said to go ahead in! I was frustrated, exhausted, and in pain--I couldn't take any more. My friend's annoyance was the last straw. After carrying that box, I was pretty useless for the next three hours.

Later I saw one of my private clients. No issues. Came home. I'm sitting around, trying to rest. My head feels heavy, my limbs are weak, and I have little energy. Hopefully my head will not fall off.

Doctor = :)

I saw a new internist, Dr. Danny (not his real name). I loved him!

Remember how I was doing well yesterday morning? Unfortunately that didn't continue. Around 2:30 the exhaustion began, and I was ready for a nap. When I got to the appointment at 3:30, I was really dragging. I had to wait so long! By the time the doctor came in at 4:30, I could barely keep my eyes open.

I did perk up when I saw Dr. Danny, though, because I was so hopeful (had been praying) that he would listen and think. He did!

First, the nurse was so, so nice. Then Dr. Danny listened and asked questions. He did some simple neurological tests, and I did okay but not great.

I had trouble touching his finger when he moved it. When it was on my left side, it always seemed to be farther away than I thought it was.

I had trouble getting my balance to begin walking and to turn in another direction. I was fine once I was walking; I could walk on a line--but I did gymnastics for quite a few years. I have/had excellent balance--much better than other people.

I also had a little trouble keeping my balance when he had me close my eyes and hold up my arms. But I think I did pretty well with it. Just not as well as I would have before. Again, excellent balance.

He also asked me to run my left heel down my right shin and vice versa. I think I did that fine.

We talked. The nurse came back in and drew five tubes of blood. She tried and missed my median vein and then went for the basilic--ow. So now it looks like a vampire bit my arm.

I'm going to have an MRI of my entire spine tomorrow. I wonder how long that will take.

I have an appointment with a different neurologist, Dr. Sami, in a couple of weeks.

Dr. Danny threw out a few possible reasons for this: MS, Lyme, a virus. He said to make sure that I don't say, "Dr. Danny said I have MS!" Of course not. Actually, what I heard was, "Maybe it's a virus... A virus could just go away." Don't viruses go away? Sometimes? I understand that it might be MS, which is serious, but he did give me hope that this all might go away.

Doing Better

After an hour and a half of sitting around, my flu head went away. Still sore, weak muscles, but better than when I woke up.

At least my brain was working. The reason I sat around for over an hour was not just because I wasn't feeling well. I was trying to solve a computer problem (I want Lion 7... never had an OS upgrade cause problems with Mail like this). Glad to know that my brain is in gear on a day that I will see a doctor. Hope it lasts!

Oh Come On

I got up about 10 minutes ago--had plenty of sleep, probably about 9 hours.

But I feel like crap! I'm tired and the muscles in my arms and legs are sore and weak. I feel like I had a major workout yesterday. My head feels fluish.

Sometimes I think that maybe sleep has to do with this disease/illness, but maybe not. That's why I have my handy dandy health blog to track patterns like this.

I'm predicting that today will not be a good day. We'll see.

Jumping Eyes. Jump. Jump.

I should have gotten enough sleep last night.. 7.5 hours... But I woke up with my alarm, not on my own, so I guess I wasn't done sleeping.

Although I was not hungry at all, I tried to eat breakfast while driving to church. Unfortunately I was gagging and having difficulty swallowing anything other than liquids. I took drinks to help me swallow the bite of food I had taken then gave up.

I went to church and interpreted for three hours. I did take a break during each meeting, when I would start to struggle. During the last hour I was really struggling--my brain would not cooperate! Then I got dizzy or something. It's hard to describe. It's happened to me before. My eyes can't focus on anything. I try but they jump around. So that makes my feel dizzy or almost carsick. That was how I felt during the last 30 minutes of church, on the drive home, and for an hour or two at home. It got better with rest. Oh, around the time that showed up, I had a stabbing pain in what I think was my stomach and LES. Probably because I hadn't eaten!

My friend drove home, because I couldn't drive after church. I was too dizzy and tired. I came home and laid down for a few hours, just talking to my sister and friend. I got some of my energy back and was able to sit up and talk with them.

Then some people from church came over. It was nice chatting with them, but I had to interpret for my friend, which was draining. Also draining was keeping my energy level up for them. So now I'm exhausted again. My legs are shaky--weak. They feel very small, which doesn't make any sense but is the only way I can think to explain it. My head feels like I have the flu. Heavy. My arms are also heavy. I'm having to go back over this post many times, because I type the wrong word and don't know it unless I try hard to edit my work. Uhhhh... This is why people don't know how sick I am, because I channel all of my energy into interacting with them. However, I can put up a good front temporarily, but I can't maintain it. If they stayed with me longer they would see that I would need to lie down (which I'm doing now).

I don't know how I'm going to work full time. Well, I do. Faith and prayer. Hopefully the doctor tomorrow will be smart.

Mostly Good Week

I had three fantastic days: Monday, Tuesday, and Wednesday. I think the only symptoms I had were being tired (not exhausted) and having my right foot pins and needles, partially numb. The pins and needles are in my right foot all the time.

I had the worst day on Thursday! It took an hour to fall asleep Wednesday night, and I was awake again after three hours. From 2:30-7:30 I laid awake... trying to sleep! I fell asleep for half an hour and then had to get up.

I suppose it's no surprise that I had a bad day. I had absolutely exhausted all day, but I got through.

Friday was okay. Saturday was also okay.

One bad day in the whole week--I'll take it!

The Case of the Cramping Quads

I feel like I have the flu. You know the sickly, weak, achy, dizzy-when-I stand feeling. Unfortunately, I do not have the flu--I wish that were all it is. It's my [Diagnosis Here Please].

I'm moving and thinking in slow motion. My body is very heavy.

I forgot to write yesterday that I went to Target briefly during one of my ups (that would be between the downs), and my quads kept cramping, particularly the right. It was quite painful. Then I realized... It was the way I was walking! I was rolling up on the balls of my feet or something, and I was tensing my quads. I tried to walk in a more relaxed way, and that helped somewhat. It was like my center of gravity was off.

Ugh, my foot has the pins and needles big time.

Worn Out

Yesterday continued to be up and down. I'd feel awful and need to rest. After an hour or so I'd get to feeling better, so I'd get up and do stuff... but I would lose energy quickly and need to rest again.

I did sleep well. I managed to fall asleep after lying in bed for only half an hour. Got in probably about 8 hours.

I woke up feeling alright, but I started to decline just after getting to church--around 9:20. It was hard to interpret. My left arm kept getting sore and tired. Well, both of my arms were tired. Somehow I made it through.

I thought I couldn't do another thing, but I managed to do the dishes and make a good lunch/dinner. That's how I operate these days: Managing. Making it through. Surviving. I used to excel!

My right foot is tingling with the pins and needles. So is the back of my right leg, though not as bad. And the left side of my scalp, on the back of my head. I forgot to mention that I do get pins and needles in the back of my head sometimes.

One day last week I got them in my tongue! It was quite uncomfortable. They were running up the left side of my tongue. Yes, only half of it.

I wish I could get this figured out before the school year starts again. I guess I need to make more doctor appointments. It's just that it's so discouraging when they don't take me seriously.

I've been sitting around for the past three hours, too tired to get up and do anything. I barely have enough energy to sit and hold my head up. I think the morning really wore me out, because I'm not bouncing back with rest like I do sometimes.

And now I'm ready to fall asleep. It changes so fast.

Good and Bad

Yes, another post from me today. It's definitely feast or famine around here.

After having a nasty morning and not being able to do much, I perked up around 12:30. I've been working on unpacking (still!). So glad to be able to get up and do stuff.

I'm having difficulty holding onto my thoughts today.

And coordination is difficult. I stumble if I don't walk consciously. And I bang toes, shins, and knees often.

I think it's weird that I can have a bad morning and then begin to do better for no apparent reason. Maybe from resting during the morning? Rest does seem to help.

Teeny Tiny Vampires

I just got up and helped my roommate, who is putting together some bookshelves. My job was to apply counter-pressure for her as she drilled in screws. And I had another symptom that I don't think I've shared. Maybe I mentioned it before, but it's happening more often.

When I use my arms, I feel like they don't have any blood in them. You know the feeling you get when you raise your hand for a long time? Or lean over a chair with your arms in front of it? Or rest your arm out over the movie theater seat next to you? That's what it feels like. I think raising your hand and leaving it up is the best parallel for this feeling. It's like the blood drains out and it begins to get numb.

Wait, numb? Oh, brother. More numbness. But this is different than what happens with my legs, because there are no pins and needles. And it's a weaker feeling. Also, I don't notice it until I go to move my arms; the pins and needles are apparent at rest and during use.

My best guess is that teeny tiny vampires have moved in to my arms and are slowing draining my blood.

Wheeeee...p: Not Enjoying the Dips of the Roller Coaster

Actually, I hate roller coasters.

Since last you heard from me... Tuesday was fine. Well, I didn't do a darn thing. Quick interpreting job in the morning. Visited one private client. Had pins in needles in my right foot but basically was okay.

Wednesday was a long day for me. I didn't have to work, but I went shopping all day with a friend. I had the twitches hardcore that evening. And pins and needles all down my right leg and foot. I think I had trouble falling asleep and staying asleep, because the pins and needles and not being able to shut off my brain.

Thursday was also a long day. I left that house at 11:30 and didn't get back until 9:30 in the evening. Went to the pharmacy, saw a private client, went to a friend's new office and her new job to clean/move, went to the mall to eat and look at some stuff (walked several levels of the mall), and interpreted/attended a church thing in the evening. I think moving books and rearranging furniture in my friend's new office killed me. I have zero endurance for physical labor these days. Oh, and I had to walk a block to my car every 20 minutes to push the button on the meter. I was ready for a nap by 3:00. The pins and needles were noticeable during the church thing, where I was sitting on a not-so-comfortable chair for an hour. Normally they are not noticeable when my mind is busy. When I got home, they didn't get better. That made it very hard to fall asleep. The backs of both of my legs were halfway numb. It was an uncomfortable feeling. It was worse on my right side but definitely happening on my left side, which was new. And I had the twitches... shakes... tingles... whatever. They are very different from pins and needles/going numb. Much worse.

Yesterday was not terribly long, but I guess I was already so worn out from the other days that it felt long. I interpreted for my friend's haircut, which mostly meant sitting in a styling chair while the girl worked. My legs kept falling asleep, in a borderline painful way. It didn't seem to matter how I moved them, they wouldn't wake up all the way. They were more numb than not--this was the back of both legs, as well as my feet. So I suffered that for 45 minutes. I guess I should have gotten up and moved around, but I was tired, and I didn't want to wear myself out by being on my feet a lot.

After my friend's haircut, I got one. Yes, more sitting in a styling chair. Hers wasn't as bad as the other one--partly because I was chatting and watching her cut my hair. Distraction helps when symptoms aren't severe.

After that, we went to a town half an hour away, to a major hospital, where my friend was meeting with some medical people and having a rehab session. I was set to interpret for that. Besides the pins and needles, I was fine. I barely noticed them... and I don't think they were as bad. I had had the drive to rest. My friend has been driving me, because I struggle with driving. That because a. it's hard for me to maintain muscle tension/pressure for braking (especially stopped at a light), and b. sometimes my judgment isn't so good. And I like to be able to rest between locations, when we're going to more than one place. Anyway, so I was doing better by the time I got to the hospital. The irony that the hospital has a major MS clinic and well-respected neurology department that I couldn't just stop in to did not escape me.

I was interpreting for one of the medical people and my friend before the appointment began, when a staff interpreter showed up. So I didn't have to interpret that appointment. Actually, I wanted to. That interpreter stunk.

After the hospital, my friend drove home. I was fine. Just tired. Pins and needles in my right lower leg and foot, which is basically all the time. Even right now, as I type this. We went to a restaurant near my house for a late lunch/early dinner and then went home. I relaxed at home all evening. I'm trying to remember where the pins and needles were but can't. I went to bed and couldn't sleep... because they were in both legs! Ugh. It was frustrating to lay awake. I've had difficulty finding a comfortable position to sleep in. The pins and needles both me, and I'll have nerve pain in my legs if I lay wrong. Seems like many positions are wrong and none are right the last few days. And I couldn't turn my brain off again. It took well over an hour to fall asleep.

Unfortunately I woke up early this morning to use the bathroom, as usual, and couldn't get back to sleep... as usual. I went downstairs but could barely walk. Muscle control + soreness = :( I went right back upstairs to try to sleep more. After an hour and a half, I fell asleep... for 45 minutes. But it did help.

Although I'm not as sore as I was the first time I woke up, I am super tired today. Fatigued. I haven't done anything! Oh, well. I think I need to rest a lot today.

I'm scared of what will happen in three weeks, when I'm working full time again.