A Pile of Crazy

I am still sick. This flare has been so nasty with the fatigue. The vertigo has gotten better, but I am still dealing with trigeminal nerve pain around/behind my right eye, shy bladder, weakness in my right arm, and weakness in my left leg. My walking is worse. Stairs are getting pretty sad!

My left leg is so much worse today. Spastic, painful, weak. I thought it was going to give out on me.

My left ear is getting better! No stabbing today for two days, just aching. However... Over the weekend, my right ear got sore. It has not gotten to stabbing, but when I realized there was junk coming out of it, and the junk smelled nasty, I started putting drops in that ear, too. I did not even go to the doctor. I was not about to miss work and pay $35 for it. I know the clinical study would like me to do that, but they will have to get over it.

Another issue is my idiot brain. My brain is seriously so dumb lately.

Case in point, I ran out of my reflux medication a week ago. I looked for a new bottle but could not find one. So... For some reason, I did not go to the store. I thought I had gotten the medication and lost it. I did not know what to do about that, so I did nothing. It took a few days for the lack of medication to affect me, but by Friday night I was really feeling it. I am ok as long as I am sitting up, because the problem is hiatal hernia. If I lie down, my stomach acid spills right out into my esophagus. Saturday night I had some trouble falling asleep. Sunday night I took two hours to fall asleep and then woke up every hour or two. No!! Not again!! Then last night I took four hours to fall asleep and woke up every half hour. I got four hours of sleep... not four hours straight: four hours total.

The problem with not sleeping enough is that it makes my brain dumber, and it makes my body not work as well. Bad cycle.

I was sort of unmotivated to take the reflux medication, because it is a strong drug--I did not respond to several other meds. Figures. I have been on it for three years, and I do not want to take it forever. My internist wants me off it. But the esophagus is not made to hold stomach acid, not to mention what happens if it escapes the upper esophageal sphincter to heads into my lungs. I looked up YouTube videos on how to cure hiatal hernia. I think I can do it, but it might take time.

Meanwhile, I need to sleep. I decided to renew the medication. Hope that I was remembering wrong and had not already gotten it and lost it. Beg the pharmacist to give me more.

About 5:30 this evening, I remembered the medicine. Problem: I could barely walk, and I was exhausted. My best friend asked if I wanted her to drive me. I could not decide whether to go or just forget about it for another day. (Idiot brain, see?) While I laid there trying to make my brain work, trying to understand the choices and the consequences of the choices, my friend got my shoes and pulled me up. So I went to the store... and found that I had called in the prescription 8/31 and had not picked it up! I guess my brain was dumb then, too.

But I am not sure the reflux was the only barrier to sleeping. Maybe stress, too? But not being able to sleep makes me stressed. I sure hope I can sleep tonight. Of course I took my reflux medication the minute I got it, but I think it takes a few days to work. I cannot remember--I have missed maybe two pills in the last three years!

Sleep... I need sleep...

Oh, church. I was able to handle the piano thing better. Of course, I prayed. Things went much better, because the regular music leader was back, and she loves to talk. I think she also loves to sing, but she definitely likes talking better. That worked out great for me.

I forgot to bring a pad for the bench. Hard surfaces increase my pain and can make me lose feeling in my left foot. So every surface in the Primary room is out. Maybe I will bring in a chair from the RS room. Or maybe I will just rest on the floor--that is what I did last Sunday. After I had recovered from music time enough to get up. All that effort made me tired and dizzy, so I just closed the piano and put my head down after singing time. It was nice. I am back in a corner, so no one is paying attention.

I tried Nuvigil again yesterday. That might have something to do with my sleeplessness last night. I don't know. I was exhausted by 8:00 pm, so I am not sure. I made notes on the day. Data! Since my brain is so dumb, I need to make a lot of notes if I want to remember things. It does not matter if it is something I am really interested in or was really good or bad, I may forget.

9/10/12
9:15 am: Took 250 mg
10:00 am: Felt a bit more energy
12:15 pm: Dizziness began (maybe my usual fatigue?), heaviness--fatigue
12:45 pm: Came home to rest
1:00 pm: Dry mouth began, continued until
2:00 pm: Anxiety began. Feeling of heart racing sometimes but not sure it really was.
2:30 pm: Back out to work. On edge with anxiety.
3:00 pm: Still have somewhat more energy than usual BUT legs tired, harder to walk. Shaky/jittery feeling, esp. hands.
3:30 pm: Anxiety worse, dry mouth worse
3:45 pm: Home again. Can't do any more--feeling shaky, tired/heavy limbs. Still anxious but tired at the same time. Feel like I want to cry or freak out, no particular reason.
6:00 pm: More tired
6:30 pm: Headache but not as bad as last time
7:00 pm: Feeling much worse. Dizzy, fatigued, a little nausea--wearing off and I'm feeling "normal" again?
7:30 pm: Dry mouth a little better. Fatigue worse.
~1:00 am: Dry mouth went away
*I was able to move around more to follow my students. But the difference was not marked. The anxiety was not constant--it waxed and waned from 2:00-6:00. No hunger again today but I knew to watch the clock for when I ought to eat. Ate lightly because not hungry.

So I have to decide if Nuvigil badness is better than the usual badness. The jury is out. Plus there is the risk of dependency--addiction scares me. But I am going to try this drug again on Thursday.

Clinic appointment this Friday. Nine months on the drug. It is absolutely not working, but I remain hopeful.

That Time Again

It is that time again. Shot day... yes. But that is not the event to which I refer. Relapse time.

I have had relapses every two months: May, July, September, November, and January. The odd-numbered months. March is an odd-numbered month.

I guess it is just a matter of time. <sigh>

I decided not to do my Avonex/placebo shot yesterday, because I wanted to do it on a different day than my daclizumab/placebo shot. I am still not 100% sure which one is the active drug and which is the placebo. I wanted more information.

I became sick the evening of the my first shots. I had had both shots on the same day, and I did not take seriously their potential to make me sick, particularly the Avonex shot. I took ibuprofen and was planning to take it again six hours later, but I did not pay attention. About six hours after the shots was when I became sick with chills, fever, and severe pain. "Aches." Ha. These are classic Avonex symptoms, so I assumed that Avonex was the active drug and that it had made me sick.

Since that first shot, I have not become sick again. Is it because my medication regimen has worked? Or is it because it was not what made me sick in the first place? I wondered if the other shot was to blame, or if I might have just been sick that day.

Yesterday I had my daclizumab shot, and I took no pain medication. None is required. I did not feel sick yesterday. I did feel sick this morning. And again around noon. I held on for a couple of hours and then took a nap. I felt better after that but definitely not back to normal.

I do not know what to think. Well... Avonex is probably the active drug.

Sensory:

-Pins and needles: 2
-Tingles: 2, left hand, right thigh after shot
-Dysesthetic pain: 5
-Paresthesias: 5, a few stabs, also electricity buzzing on my legs--felt like on the skin, not deep

-Numbness: 3
-Vision: 0 I guess
-Nerve pain: 5
-Hearing: 1

Motor:
-Walking: 2? I mostly sat on the couch
-Sore muscles: 5, some almost-spasms in my right lower leg, pain in right thigh for several hours after the shot. It has been more than four hours, and it still hurts--unusual

-Spasticity: 5, left leg especially
-Weak muscles: 3

-Endurance: 5 I guess

-Fine motor: 2

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 7
-Balance: 0

-Vertigo: 0

-Sleep: 1

-Bladder: 2, trickly all day lately--still confident that this is from despiramine, as is dry mouth
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: Confused about the medication stuff! A little frustrated that my shot today hurt so much. Mostly calm, bored.

Chilling--Can't Wait To Be Off the Steroids!

This lack of sleep is killing me. I know, 7 hours, wah... that is like 4 for a normal person! And my knees hurt. Also have had vertigo for the last couple of days. And bladder issues now. Steroids are rough.

It is just like last time: from day one I have difficulty going back to sleep if I wake up. Then on the fourth day, I have three more problems show up: joints, vertigo, and bladder. This time, I had another symptom added on the fourth day, which was lower back pain on the right side.

I hope the previous steroid pattern does not continue, with the sleepless night of peeing every 30 minutes, getting a UTI, and being nonfunctional for days. Prayers.

Alright, well, not much else to say about today. I will just do my PT homework and daily data. Last day of PT homework! I will feel so spoiled tomorrow not needing to keep records every half hour. I do feel that it was beneficial to get this look at my symptoms and the way my activities impact them.

PT Homework
Slept 11:00-5:00. Exhausted but couldn't sleep more. Out of bed at 7:15. 

7:30
F 9, s 3, p 3, v 4, c 3, leg w 7, arm w 3, d 1
Walked 12 ft, potty, walked 10 ft, down stairs, walked 15 ft. Stood for brief ASL conversation. Walked 30 ft (getting snack), back up stairs. 


8:00
F 9, s 2, p 5, v 4, c 3, leg w 7, law 1, raw 6, d 0
Shower-stood, arms up for hair and face. Stood to dry off and collect stuff. Sat for face products, etc. Stiff joints from steroids--esp left knee.
8:30
F 7, s 2, p 4, v 4, c 2, leg w 7, law 1, raw 7, d 2
Stood to wash hands and put away face stuff. Walk 30 feet stood to choose clothes and dress. Stood to brush and put products in hair. Sat on landing and blowdried hair and brush with both hands. Stood to fix hair. Stood to read and type email on phone. Walked 20 ft, sat at vanity and used r arm to apply primer. 


9:00
F 8, s 5, p 5, v 4, c 0, leg w 6, law 1, raw 7, d 1
Sat on low stool for makeup. Walked 18 ft, stood to wash makeup brushes. Walked 12 ft, got socks from laundry basket. Walked 20 ft to vanity, sat and put on mascara. All makeup with r hand. Walked 12 ft, got coat from hook, sat on top step for FD, walked downstairs.
9:30
F 8, s 3, p 6, v 4, c 2, leg w 4, law 0, raw 5, d 2
Walked back and forth collecting stuff, making breakfast, forgetting stuff. Total about 100 ft. Packed up laptop. Took gabapentin, ala, alc, cranberry, b12. Sat on couch eating breakfast. Walked 6 ft then up stairs then 10 ft, bathroom. Got sweatshirt from hook, back down stairs. Carried laptop bag and purse 120 ft to car. 


10:00
F 4, s 5, p 3, v 4, c 0, leg w 7, law 0, raw 4, d 1
Sat in car while it warmed up. Took ibuprofen. Drove to MVA. Walked 120 ft. Sat at counter.

10:30
F 4, s 5, p2, v 4, c 0, leg w 7, law 4. Raw 2, d 0
Walked 120 ft to car. Sat a few minutes. Drive five min to target. Walked 400 ft with cane. Drove until after 10:30...


11:00 AM
F 4, s 3, p 4, v 4, c 2, LLW 5, RLW 6, law 2, raw 1, d 1
Drive 10 minutes. Walk 150 ft, went potty, stood washing and drying hands. Walked 50 ft. Stood looking at medications. Walked 150 feet. Drove more, arrived 11:00. Glasses day. 


11:30
F 4, s 6, p 6, v 4, c 2, LLW 7, RLW 4, arm w 2, d 3
Sat in car five min using phone for FD. Walked 300 ft carrying laptop bag and purse. Unpacked laptop. Sat at table discussing work. 

12:00
F 4, s 3, p 2, v 4, c 1, leg w 4, arm w 1, d 1
Sat at table discussing work, using laptop. Ate snack. Worked more at table. Walked 300 ft, got food, walked 300 ft. Sat at desk with colleague.

12:30
F 3, s 2, p 4, v 4, c 1, leg w 5, arm w 1, d 1
Sat at table eating lunch, began working.


1:00
F 7, s 3, p 5, v 4, c 2, leg w 6, arm w 2, d 2
Sat at table working with colleague. Discussing, using laptop.


1:30
F 5, s 2, p 7, v 4, c 1, leg w 4, arm w 2, d 2
Sat at table working with colleague. Discussing, using laptop. Walked 3 feet, bent to plug in computer, walked 10 ft to and from trash. Sat at table again.


2:00
F 2, s 3, p 4, v 4, c 0, leg w 4, law 0, raw 3, d 1
Sat at table conversing with colleagues, working using laptop.


2:30
F 3, s 3, p 7, v 4, c 1, leg w 4, law 0, raw 1, d 2
Sat at table working with colleague, using laptop. Walked 150 ft for a snack. 


3:00
F 6, s 3, p 7, v 4, c 2, leg w 5, law 1, raw 1, d 2
Sat at table working with colleague, using laptop.


3:30
F 4, s 4, p 7, v 4, c 2, leg w 4, arm w 1, d 3
Sat at table working with colleague, using laptop. Took gabapentin.


4:00
F 3, s 6, p 5, v 4, c 1, LLW 6, RLW 4, law 3, raw 2, d 1
Sat at table working with colleague, using laptop. Packed my stuff. Walked 300 ft carrying laptop bag, purse, and plastic bag. 

4:30 PM
F 4, s 4, p 6, v 4, c 2, leg w 3, arm w 0, d 2
Put bags in car. Sat and read/wrote email five min or so. Drove 20 minutes.

5:00
F 8, s 3, p 6, v 4, c 1, LLW 5, RLW 2, law 0, raw 2
Carried bags 120 ft to house. Set down bags, walked 6 ft, sat on couch, looked through mail and conversed in ASL. Wrote email on phone for 10 min. Walked 6 ft, up stairs, 10 ft, bathroom. 


5:30
F 9, s 4, p 6, v 4, c 3, LLW 7, RLW 4, law 1, raw 3, d 3
Walked 12 ft. Laid on bed, eyes closed. Walked 12 ft and down stairs.


6:00
F 8, s 5, p 7, v 4, c 1, leg w 5, law 0, raw 3, d 4
Laid on couch and watched tv 20 min. Laid on couch and played phone game 10 min. 


6:30
F 5, s 5, p 3, v 4, c 1, LLW 4, RLW 3, law 0, raw 2, d 2
Laid on couch playing phone game 20 min. Went upstairs and got coat, walked 120 ft to car. Rode in car. 


7:00
F 1, s 2, p 7, v 4, c 2, leg w 2, arm w 2, d 4
Walked 140 ft, sat in dim restaurant. Chatted in ASL and English. Took lactase, cranberry, protonix, vit d, prednisone. 


7:30
F 3, s 6, p 6, v 4, c 1, leg w 5, law 3, raw 5, d 3
Sat and ate in restaurant. Chatted in ASL. 


8:00
F 2, s 5, p 6, v 4, c 2, leg w 5, arm w 2, d 3
Sat and ate in restaurant. Chatted in ASL, watched conversation. 


8:30
F 2, s 6, p 7, v 4, c 2, leg w 2, arm w 1, d 3
Walked 35 ft, bathroom, stood to wash hands, walked 35 ft. Sat and ate, chatted in ASL. 


9:00
F 2, s 5, p 7, v 4, c 1, leg w 1, arm w 2, d 1
Walked 100 ft, rode home, walked 120 ft. Stood to change clothes. Set up laptop. Sat on couch. Took gabapentin and Aleve.


9:30
F 3, s 4, p 8, v 4, c 2, leg w 2, arm w 2, d 0
Sat on couch watching TV and using laptop.


10:00

F 5, s 5, p 7, v 4, c 1, leg w 3, arm w 2, d 0

Sat on couch watching TV and using laptop.

10:30
F 5, s 5, p 7, v 4, c 1, leg w 6, arm w 2, d 1
Sat on couch watching TV and using laptop. Walked upstairs, stood to wash face, sat to brush teeth. Walked 25 feet, stood, sat, blah. Bed!

Daily Data

Sensory:

-Pins and needles: 4
-Tingles: 0
-Dysesthetic pain: 6
-Paresthesias: 0
-Numbness: 2
-Vision: 4, double vision! Fun times.
-Nerve pain: 5
-Hearing: 1, some at night

Motor:
-Walking: 2
-Sore muscles: 2
-Fine motor: 3
-Weak muscles: 6
-Spasticity: 4

Cognitive:
-Processing: 2
-Memory: 1
-Attention: 1
-Confusion: 1

General:
-Fatigue: 7
-Balance: 3
-Sleep: 6, I am realigning this to 9 hours as the ideal "0" rating (6 hours, woke up around 5:00)
-Bladder: 3, does not want to give up the goods--I guess I am retaining water, as they say
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 7, took something

Emotions: Fine. I do not know how, except that I have been trying to stay close to the Lord. I listened to sacred music this morning while I prepared for work, and I tried to be patient with myself. Reading my scriptures. I don't know, I am just feeling centered.

PT Homework

Today I will do a bit of a different blog post. My PT homework!

I got headaches twice today. Brief. OK, on to the homework. I was to set a timer for every 30 minutes, recording the levels of certain symptoms at that moment. I was also to record what I was doing in the 30 previous minutes, including physical activity and any medication taken.

I used voice recognition on my phone for many of these entries, so I will have to go through and translate them into English. But this is what I had. (Can't believe the phone got close on acetyl l-choline, but thought "drove to PT" was "Jeff TPT.")

This PT fatigue diary was a lot of work, so I hope it ends up helping. I have to do this for four more days! Ugh.

Sleep: bed at 9:00 last night but only slept 5 hours. Woke up hot, not tired, cold, not tired, getting tired but noises woke me up, etc. Got out of bed at 7:00.

7:30 AM 
F 9, c 2, s 1, llw 6, rlw 5, law 2, raw 5
Got out of bed at 7 o'clock walked a few feet to bathroom to use the bathroom take a shower. stood during shower hands above head to wash hair and face. stood to dry.  Stood to get dressed.


Time 8:00 AM. 
F 9, C 3, S 1, LLW 2, vision 3, law 5, raw 9. 
Activity description/medications at one acetyl whatever tech space took three gabapentin and one acetyl l-carnitine Activity description stood to choose clothing from closet, stood to get dressed, sat to do minimal makeup, sat on floor to blowdry hair, stood to fix hair.

Time 8:30 AM
F 5, C 2, V 3, S 3, Raw 5. 
Activity descriptions/medications took a lactase pill, gathered my stuff, walked 120 feet to car carrying laptop bag, purse, papers, and lunch bag, drove to PT, walked 300 feet, drove to a school.

9:00 AM 
F 2, S 1, V 0, P 0, c 1, leg w 2, law 0, raw 3
Took another acetyl l-carnitine, alpha-lipoic acid, and B12. Sat in car making my notes for fatigue diary, walked and carried laptop bag 500 feet in to the school and around looking for the room. Opened a few heavy doors. Sat (in adult chair) listening to colleague, gave her some feedback on a program I know very well.


9:30 AM 
F 1, c 2, v 0, w 0
Sat speaking with colleague. Stood a few minutes greeting 3 y/o child and mother. Sat in medium chair watching colleague work, giving feedback, conversing with mother.

10:00 AM 
F 1, S 1, P 0
Stood a few minutes. Walked about 30 feet. Sat with mom and boy asked him to say some more words chatted a little with mom. Walked 20 feet. Sat in adult chair, conversed with colleague.

10:30
raw 5, LLW 3, RLW 1. V 1. S 3, P 3, F 9.
Picked up my laptop bag stood and chatted with colleague for three minutes. Walked 300+ feet to car. Drove to another site about 20 minutes away. Sat in car two minutes reading emails. Walked 300 feet into site carrying laptop bag purse lunch bag and papers.


11:00 am 
f 8 s 3 w 2 legs 3 raw, c 2 v 1 p 3
Unpacked my stuff and set up my laptop. Sat at desk chatting with a colleague. 

11:30 am 
f 8 s 3 LLW 7 RLW 6 c 2 v 0 p 5
Sat at desk chatting with a colleague, legs up on bar of desk, probably tensing against underside of desk

12:00 pm f 6, v 0, LLW 8, RLW 7, c 1, p 4
Walked 55 ft to bathroom, walked 20 more feet to kitchen, stood and washed spoon, walked 15 feet to lounge and microwaved food. Sat on barstool. Got up twice to check on food. Ate lunch sitting down chatting with colleagues. 

12:30 pm 
F 3, s 2, w 0, c 1, p 2, v 0
Sat at table chatting with colleagues while preparing for student session. 

1:00 
F 9, s 7, LLW 6, RLW 5, v 3, p 5, c 2
Session with 3 y/o boy, sitting and moving around on the floor, briefly sitting in chair

1:30
F 9, s 7, LLW 8, RLW 8, v 3, c 0, p 5
Finishing session with boy. Cleaned up toys, got up, listened to colleague problems while sitting at desk, walked 55 feet to kitchen to refill water bottle, walked 60 feet to classroom. 

2:00
F 5 spasticity three. Pain two. Vision two. Cognition one. Left leg weakness for. Right leg weakness for. Left arm weakness zero. Right arm weakness three. 
Sat in a chair interpreting sign language and helping assess reading levels

2:30 PM administered a test to two students from 215 to 230 sitting in a chair. Weakness legs level II. Team lob all are. Estes any level IV. Cognition level II. Vision level one. 2 o'clock to 210 finished discussing reading evaluation with teacher sitting in a chair. Walk about 80 feet to classroom. Went to table went to chair sat down.

3:00 PM administered a math test. Sitting. Signing and speaking. Breaks all students read their answers. Short breaks. Sitting in a chair. Fatigue level 0. Weakness legs level zero. Pain level II. Vision level 0. Cognition level one.

3:30 PM read a book and worked on language with the students. Signing the whole time. And speaking. Sitting in a chair. Played a game on the floor at the beginning of the time with three students. Managing behavior. Wait for 10 minutes. Signing and talking. Sitting on the fatigue level IV. Spasticity level II. Pain level II. Vision level II. Cognition level 0. Weakness in legs level II. In harm's left arm nine right arm level III. 3:45 took gabapentin

4:00 PM cleaned up desk packed my things sat down to help Cindy. Sat for 15 minutes working on the computer and answering questions. Fatigue level V. Spasticity level V. Pain level V. Vision level III. Cognition level III. Left leg weakness level II. Right leg weakness same. Arms left arm weakness zero. Right weakness one.

4:30 PM sat and talked with Cindy for half an hour trying to help Cindy figure out something on the computer. Fatigue level VIII. Spasticity level V. Pain level V. No wrong pain level II. Vision level III. Cognition level III. Stead talking with Andrea and Cindy for 15 minutes. Walked out to car not yet locked out to car wrong.

5:00 PM still talking to Andrea and Cindy for 10 minutes. First walk from Iran to Andrea's room about 80 feet. When finished talking one out to car at and parking about 80 feet. Drove home. 15 level IX. Spasticity level V. Week mess right arm level V. I was holding my purse and laptop bag on my right shoulder. Carrying my lunch bag and stickers bag in my left hand. Wearing my coat. Vision level IV. Pain level IV. Left leg weakness level VI. Right leg weakness level VI. Right arm weakness level V. Probably because I'm holding my phone. Cognition lab all three.

5:30 PM 
F 9, s 7, p 8 (spasticity and headache), vision 4, LLW 3, RLW 2, raw 4, c 4
stop for gas call and started the pump sat back down in my car got out again to turn off the pump drove the rest of the way home. Walked in from car abt 40 feet, walked into living room abt 20 feet. Set down bags, walked to bathroom abt 12 feet including up 2 stairs and down 2 stairs. Sat on couch and refilled pill case. 

6:00 pm
F 8, s 8, p 7, v 2, c 3, LLW 8, RLW 6, raw 4
Got up and got water 20 feet, sat on couch and ate dinner, chatted a little in ASL, watched tv.

6:30 pm
F 6, s 8, p 7, v 2, c 4, LLW 5, RLW 4, raw 4
Sat and watched tv, chatted in ASL. Sat on couch whole time. Chatted in English.

7:00 pm
F 5, s 7, p 7, v 2, c 2, LLW 4, RLW 4, raw 2
Walked 18 feet to shelf and back, sat on couch 5 min, walked to car abt 50 feet, rode 10 min. Sat in car 10 min, walked into church 30 feet. 


7:30
F 3, s 5, v 0, c 0, LLW 0, RLW 0, raw 3
Got a chair and dragged it 10 feet (hard), sat and chatted in ASL and English. Taught sign language 15 min--mostly listening to students talk about their day. 

8:00
F 5 S 4, v 1, c 0, LLW 0, RLW 0, raw 5
Sitting teaching sign language. Leaned arm on table sometimes. 

8:30
F 6, s 7, p 6, v 4, c 2, LLW 7, RLW 7, raw 3, law 4
Sitting chatting 10 m ASL and English, standing chatting 5 m. Walked to car 30 feet. Rode home 10 m. Walked to house 120 feet. 



9:00
F 9, s 8, v 3, c 1, LLW 7, RLW 6, raw 2, law 1
Walked to kitchen idly following friend (20 feet) and back, sat down. Got up and went to kitchen again for snack. Went back to couch, sat and watched TV while looking at old blog posts.

9:30
F 8, s 6, v 1, c 4, LLW 7, RLW 7, raw 1, law 1
Took gabapentin, 1 aleve. Carried laptop upstairs. Went into bedroom, went back out and hung up jacket, went back in and changed clothes while standing. Signed a few times. Went into bathroom, stood while washing face. Got floss and toothbrush. Went into bedroom, sat on bed to floss and brush. Back to bathroom to finish teeth, used bathroom, stood to put on moisturizer, walked back to bedroom. Sat on bed while blogging.


10:00 pm
F 8, s 5, v 1, c 4, LLW 7, RLW 6, raw 5, law 5
Sat on bed finishing up blog post until 9:40. Chatted briefly in ASL. Asleep before 10:00...

Sensory:
-Pins and needles: 1
-Tingles: 0
-Dysesthetic pain: 4
-Paresthesias: 0
-Numbness: 1
-Vision: 4 was worst but off and on. Now I see that it correlates with fatigue.
-Nerve pain: 4
-Hearing: 0

Motor:
-Walking: 5
-Sore muscles: 8
-Fine motor: 3
-Weak muscles: 7
-Spasticity: 8, had very funny spasticity that began yesterday--twitches in my right butt! Awesome. Annoying, actually. At least it is not painful, which most of my spasticity is, especially the tight tendon in my left groin. :(

Cognitive:
-Processing: 3
-Memory: 1
-Attention: 0
-Confusion: 0

General:
-Fatigue: 8
-Balance: 3
-Sleep: 8 (5 hours--went to bed at 9:00 and woke up at 2:00, couldn't go back to sleep. Hot, not tired, cold, not tired, perfect temperature and getting tired but sound woke me up just as I dozed, then AGAIN sound woke me up just as I dozed, then time to get up)
-Bladder: 0, yay...
-Proprioception: 1
-Swallowing: 0
-A: 0
-B: 4

Emotions: Fine. Pretty calm, despite all the pain and fatigue.

Come On, Tomorrow

Painful, sickly, tired day. Like yesterday and the day before except with a more "sick" feeling. And I had vertigo several times.

On top of the pain, spasticity, etc., I kind of feel like when I do an Avonex shot. What's up? I guess I will know more tomorrow.

Sensory:
-Pins and needles: 5
-Tingles: 0
-Dysesthetic pain: 7
-Paresthesias: 0
-Numbness: 4
-Vision: 3
-Nerve pain: 4
-Hearing: 0

Motor:
-Walking: 3
-Sore muscles: 8
-Fine motor: 3
-Weak muscles: 7, somehow my laptop keeps getting heavier...
-Spasticity: 8

Cognitive:
-Processing: 4, mainly with expressive but also receptive. My sister speaks quickly, and I had to ask her to repeat herself several times. The first time sounded like gibberish.
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 10, I would be able to do something for half an hour and then be just wiped out. It took a long time to get some energy back.
-Balance: 3, lost my balance several times
-Sleep: 3
-Bladder: 1, I think it is getting better, but there is still that odd smell to my urine. Like a skunk. It has been going on for three or four days--I am planning to ask about it tomorrow.
-Proprioception: 2
-Swallowing: 0
-A: 0
-B: 0

Emotions: Fine. 

Double Vision No Es Bueno

Today I had double vision off and on. It was not a problem for big things, because the edges of them are just blurry. The main negative effect was with print, because it was like they had a weird double font. That made it hard to read.

I just had a weird day. My sensory system feels overloaded.

I am so careful on the stairs now! I do not want a fall. If I broke something, I would be so mad.

Sensory:

-Pins and needles: 2

-Tingles: 1

-Dysesthetic pain: 3

-Paresthesias: 0

-Numbness: 2, more in my right foot

-Vision: 3, double vision sometimes as mentioned above, difficulty focusing (my eyes jump), left eye worse than right (CHANGE). But no pain woohoo! (Update at 7:40--spoke too soon! Mild pain in/above/around my left eye, and it feels like my eye muscles are spastic.)

-Nerve pain: 2

-Hearing: 1

Motor:

-Walking: 1

-Sore muscles: 2

-Fine motor: 1

-Weak muscles: 5, arms worse than legs now--this switch began yesterday and was more pronounced today. Interpreting was so hard. Sometimes I wonder how much longer I can do that. I work for three hours straight every Sunday. It is more than a professional interpreter would work without a partner!

-Spasticity: 3

Cognitive:

-Processing: 2, comprehension of quick speech was difficult. I had some expressive difficulties; one that made me laugh was when I said, "She borrowed that to her." That is fine in my second language, but not in English! I somehow mixed up the languages or transliterated or something.

-Memory: 1

-Attention: 2, I had a few weird moments where I was not sure what was going on around me, because I had zoned out. I had to work to maintain focus. This was during church. Hard to keep it together for three hours.

-Confusion: 1

General:

-Fatigue: 6, it took about two hours after church to recover enough to sit up and be human again

-Balance: 1

-Sleep: 2, woken up by fireworks! Happy New Year.

-Bladder: 1, I am a little concerned that I am not putting out ask much as I am taking in. It might just be the slow flow fooling me.

-Proprioception: 1

-Swallowing: 1

-A: 0

-B: 2

Emotions: I almost cried a few times during church; it was during RS, when they were discussing sisters helping each other. I need help. The problem is that I do not know what to ask for, so I ask for nothing.

Also, I am still a little nervous about my appointment on Friday. I am going to begin giving myself weekly shots, possibly for the rest of my life. When that comes to mind, I feel something weird bubbling up inside me. It is like I want to scream or flail or hit someone. Push it down... Push it down...