Going Downhill Again?

I seem to be getting worse again. Darn.

I was not able to do much today. Worn out quickly, with muscle weakness a big problem.

However, I had a nice evening of immune, autoimmune, MS, and digestive research. I continued reading Curing MS, which I have out [overdue] from the library and my friend just found today. I was about 100 pages in already and had just gotten to the good stuff.

I learned about monoclonal antibodies. Good timing, since I will possibly be receiving an injection of the monoclonal antibody daclizumab on Friday. Now I understand how they work.

As things came up, I googled them and tried to find reliable information. I took notes, since my memory was poor today.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Dysesthetic pain: 4

-Paresthesias: 0

-Numbness: 1

-Vision: 2?

-Nerve pain: 3

-Hearing: 1, high-pitched, "fuzzy" tinnitus again, as well as positional pulsatile tinnitus

Motor:

-Walking: 3

-Sore muscles: 3

-Fine motor: 1

-Weak muscles: 6, but it did wax and wane

-Spasticity: 5

Cognitive:

-Processing: 2, spelling problems again, as well as word finding

-Memory: 2, had to use strategies again, which reduced frustration

-Attention: 0

-Confusion: 0

General:

-Fatigue: 6

-Balance: 2

-Sleep: 0

-Bladder: 0

-Proprioception: 1

-Swallowing: 1

-A: 0

-B: 4

Emotions: Bored! Is that an emotion? I was bored most of the day, until I started researching MS. Then the time flew. (I first typed flu, ha.)

Slipped

I just lost my footing on the stairs and slipped down the last two. Thank goodness I was holding on to the rail and did not fall. I just got rug burns on my feet.

And I was very shaken, thinking what might have happened if it had been at the top of the stairs, or if I had not been holding on to something. I have had difficulty going down stairs for several months, but I guess I thought I was impervious to falling or getting hurt. Even though I know that falls are a big problem for people with MS. And even though a neurologist told me just a few weeks ago that I might want to use a cane for stability while walking.

I want to see a PT.

Tired But Still Rocking

Fatigue came and went for no apparent reason; I also became weak and tired when I tried to do things. But overall I had a wonderful day, with little pain.

I filled out my HRA/FSA forms today. Over $3000 in medical expenses, but I will get back some of it. Not even half, but whatever, at least it is something. I was proud of myself for finally filling out those forms, because that task was overwhelming for me, and I have been putting it off for months.

A couple of things I meant to do but did not were: 1. Making a PT appointment, and 2. Calling the MS Society person who coordinates exercise groups/sessions/something.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Dysesthetic pain: 1

-Paresthesias: 0

-Numbness: 2

-Vision: 2? (Hard to say when I do not leave the house--no pain at least)

-Nerve pain: 2

-Hearing: 0

Motor:

-Walking: 2

-Sore muscles: 3

-Fine motor: 1

-Weak muscles: 5

-Spasticity: 3

Cognitive:

-Processing: 2

-Memory: 0

-Attention: 0

-Confusion: 1

General:

-Fatigue: 5

-Balance: 2

-Sleep: 1

-Bladder: 1

-Proprioception: 1

-Swallowing: 1

-A: 0

-B: 1

Emotions: Content.

Great Day

I did not have much pain today! And I sat a lot, working on my laptop on the couch--usually sitting increases my nerve pain and dysesthetic pain. I will say that I got totally worn out by a brief trip to the grocery store and took a good 30-45 minutes to recover. But then I had a wonderful evening playing games with friends.

I forgot to mention that I had another "But you look so good" from a family friend the other day. If I had a nickel every time...

Sensory:

-Pins and needles: 1, although it does get bad when I try to put my feet up, such as resting them on the coffee table

-Tingles: 0

-Dysesthetic pain: 1

-Paresthesias: 0

-Numbness: 2

-Vision: 3

-Nerve pain: 1

-Hearing: 1, just a bit this morning

Motor:

-Walking: 1, definitely getting pigeon toed. I think I need to see a PT.

-Sore muscles: 1

-Fine motor: 1, clumsy, dropping things

-Weak muscles: 4

-Spasticity: 3

Cognitive:

-Processing: 2, expressive language is rough sometimes--dysfluent in a cluttering way

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 4

-Balance: 2, still balance checking on walls, lol

-Sleep: 1

-Bladder: 0

-Proprioception: 0

-Swallowing: 1, I guess I will add this. Ugh, another thing to rate. Well, I definitely was having problems, especially this evening. Drink, cough. Drink, cough. I have had swallowing problems off and on since this whole thing began at the end of May. It was one of the first symptoms. I also had swallowing problems two years ago, when I was recovering from gallbladder surgery.

-A: 0

-B: 0

Emotions: Anger is the word of the day. My fuse was short. It didn't help that my sister did something she knew would bother me and said she would not do... contractors were not willing to check out an area I was concerned about... I had three separate arguments with a friend because she misunderstood and would not listen to my explanation... and collections called. Not for me; I field calls for a friend. There was a misunderstanding about a hospital bill that was paid on time but not entered in their system. Anyway, it was a rough few hours with all that. I may have overreacted to the collections idiot. Who was totally inappropriate, snapping: "Look, it is an inconvenience for me to have to call you about $25." And a sarcastic: "Wow, you paid it, congratulations." And the best one: "You get what you give."  See why I spat fire and demanded to speak with his supervisor?

Recovering Again!

I went to visit some family out of town; my friend drove me up. I had a great time, although the kids wore me out. It was worth it.

During the five-hour drive home, it was so interesting how the fatigue, the lassitude, would come and go for absolutely no discernible reason. Listening to music... fine... still listening to music... exhausted... still listening to music... better now. ??

Sensory:

-Pins and needles: 1

-Tingles: 1

-Dysesthetic pain: 3, after sitting in the car for hours!

-Paresthesias: 1

-Numbness: 2

-Vision: 3

-Nerve pain: 3

-Hearing: 0

Motor:

-Walking: 1, although I notice I am walking a bit pigeon toed now--spasticity?

-Sore muscles: 2

-Fine motor: 0

-Weak muscles: 4

-Spasticity: 3

Cognitive:

-Processing: 2

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 5

-Balance: 2, I was about to mark it 0 until I realized that I did not used to bump into walls or touch them for balance checks.

-Sleep: 5, slept poorly in an unfamiliar, uncomfortable bed--and it was a bit warm. Not a great combination.

-Bladder: 0

-Proprioception: 0?

-A: 0

-B: 0

Emotions: Swings from frustration/sadness to gratitude for the perspective MS has given me and is giving me.

Recovering

I spent the day recovering from yesterday. I slept in and was tired all morning. My friend kept telling me to take a nap, but I HATE naps, so I just closed my eyes for a while. I had a great, lazy afternoon and evening. Got a lot of indexing done!

Sensory:

-Pins and needles: 1

-Tingles: 0

-Dysesthetic pain: 2

-Paresthesias: 1

-Numbness: 2

-Vision: 2, better! And no pain!

-Nerve pain: 4, but there were times that I had none

-Hearing: 1

Motor:

-Walking: 1

-Sore muscles: 2, I am so stiff and sore every morning, and I decided that I am going to discount that for the ratings. This is for the rest of the day.

-Fine motor: 0? I didn't really do anything fine motor intensive. Typing was fine.

-Weak muscles: 4

-Spasticity: 3

Cognitive:

-Processing: 0

-Memory: 2, and I am afraid it is really worse. Memory is a hard one to rate. What if I forget what I am forgetting? This is just based on what I catch by other people bringing up or me later remembering.

-Attention: 0

-Confusion: 0

General:

-Fatigue: 5

-Balance: 1

-Sleep: 1

-Bladder: 1

-Proprioception: 1

-A: 0

-B: 5

Emotions: None. Haha, I guess you cannot have NO emotions. I was fine today. I am trying to remember my mission statement and to do another thing the book recommends: counter your self-limiting statements. For example, when I think: "I am too tired to do that," adding, "but I will try, because I can always rest if I need to."

Weird Back Thing

I was going to say back pain, but it is not exactly pain. It is a pulling sensation. Sort of like the cord tightening feeling behind my knees--spasticity.

It is near the level of my bra, maybe a little below. About an inch from the spinal column. It feels like the muscle fibers go horizontally but a little upward. At least, that is the direction of the pulling. The pulling feels like it is only a few inches "long."

It kind of felt like the muscle would spasm, but it did not. Thank goodness--I have had a back muscle spasm near my shoulder blade, and it was unbelievably painful.

Christmas!

Merry belated Christmas!

I had a great day. I performed a piano piece in church and did reasonably well, considering my vision was so blurry that it was hard to read the music. Hooray for muscle memory. I mean, I made mistakes, but not tons and tons, so I did not mind.

I also sang in the choir, and I did not need to read the music, because I had my part memorized (good thing, because I could not read that small print, lol). Church was wonderful, and I am glad that I suffered through the weekly choir practices. All of the numb feet, burning pain in my legs, fatigue, and forgetting lyrics (embarrassing--that does not normally happen to me) were absolutely worth it. I am glad that I am not giving up things that I love. I am not ready to give up my life yet!

The bishop spoke yesterday, which was so nice. I enjoyed the thoughts he shared and the spirit he brought. (I literally just typed brang. Huh??)

After church, we ATE! We had skipped breakfast. We ate leftover donuts from Saturday--lame. Then we took a bunch of pictures. I was texting with a heavenly 11-year-old, who could not believe it was 2:00 and we had not yet opened presents.

We finally did open presents, and I got things that I had asked for, such as a cardigan and makeup (eyeshadow with microglitter!!). A subtle MS theme ran through many of my other presents. A healthy cookbook. A brain-teaser puzzle to build memory, fine motor, hand-eye coordination, and spatial reasoning. Multi-tasking, something I used to be able to do! Hm... There were others, but I forget--guess I really needed that memory-building puzzle.

Yesterday's numbers:
Sensory:

-Pins and needles: 2

-Tingles: 0

-Dysesthetic pain: 3, but none all morning!

-Paresthesias: 1

-Numbness: 2

-Vision: 4

-Nerve pain: 5, good in the morning but started picking up around 3:00

-Hearing: 1, still off and on tinnitus, very mild

Motor:

-Walking: 1

-Sore muscles: 1

-Fine motor: 2

-Weak muscles: 4

-Spasticity: 3

Cognitive:

-Processing: 0

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 2

-Balance: 1

-Sleep: 1

-Bladder: 1

-Proprioception: 1

-A: 0

-B: 6

Emotions: Happy! No blue, blue Christmas here.

Merry Christmas Eve

I went out first thing this morning to grab a last-minute present, and then I hung around the house all day.

Sensory:

-Pins and needles: 0

-Tingles: 0

-Dysesthetic pain: 2

-Paresthesias: 1

-Numbness: 4, legs

-Vision: 4, both eyes have taken turns hurting today. My vision got very blurry this morning, after I stood and signed for about half an hour. Maybe I was a little warm. It was hard to read the music when I tried to play the piano afterward. After i rested, I could see better--at least enough that close things were not blurry.

-Nerve pain: 2

-Hearing: 1

Motor:

-Walking: 1

-Sore muscles: 4

-Fine motor: 3, apraxic! I tried to play a video game, but my fingers often pressed a different button than I intended or moved the controller down when I tried to move it up.

-Weak muscles: 5

-Spasticity: 3

Cognitive:

-Processing: 1

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 3

-Balance: 0

-Sleep: 3

-Bladder: 0

-Proprioception: 1

-1: 0

-2: 0

Emotions: Nothing of note.

My Mission Statement

I am reading a book that advised writing a mission statement as a way to increase self efficacy. Like being confident and using the placebo effect/positive thinking to your advantage. I totally believe in that stuff.

My mission statement is still under construction. Here is the first draft:

I, (beachcomber), am a daughter of God. I am a fantastic writer and speech-language pathologist, who loves children, the ocean, music, skiing, and learning new things. I am dedicated to following Heavenly Father's plan for me: To prepare myself and others for glory in heaven. I happen to have MS, but MS will not stop me from following Heavenly Father's plan for me and doing things that I enjoy, because:
-I will monitor my symptoms closely;
-I will pursue effective treatment;
-I will be more direct with my doctors;
-I will try to live in the moment; and
-I will not let stress or the fear of MS impact my happiness.

So there you go.

Keep Cool!

Well, the insomnia story ended well. I went back to bed, got up and turned on the fan, and was asleep ten minutes later. I kept wondering about that during the night, but my body hurt so much that I did not want to get up and turn on the fan. Besides, it was 45 degrees outside and the heat was off--who would need a fan?? But I was too warm to sleep.

Lesson learned. I ended up having a surprisingly good day, especially after I rested in the afternoon. I had a great evening.

Sensory:

-Pins and needles: 0

-Tingles: 0

-Dysesthetic pain: 3

-Paresthesias: 1

-Numbness: 4, legs, face, mouth/tongue

-Vision: 4, both eyes have taken turns hurting today. Maybe my double vision is better? Just blurry--far things.

-Nerve pain: 2

-Hearing: 1

Motor:

-Walking: 2

-Sore muscles: 6 when I woke up--again, usually stiff/sore in the morning. Down to 3 later.

-Fine motor: 2

-Weak muscles: 5

-Spasticity: 2

Cognitive:

-Processing: 1

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 4

-Balance: 1

-Sleep: 7

-Bladder: 1

-Proprioception: 3, still impacting my piano playing. And I had that weird "my legs are gone" and "are my hands touching each other?" stuff while I was really tired this morning. While I was trying to fall asleep--I slept off and on for an hour and a half, but when I woke up, I felt like I was just a head and torso sometimes. Until I moved. Then I could feel things against my limbs. Legs were worst.

-1: 0

-2: 1

Emotions: Shed quite a few tears this morning. One thing that helped me later was a book about MS manifesto. I was writing my mission statement. I will share it in its own blog post.

Still Can't Sleep

Not a wink.

This type of insomnia is so odd. Maybe this is normal insomnia--I am still pretty new to it. I never had a problem sleeping until MS.

I seriously forget that I want to sleep. It occurs to me sometimes, but it is not like I am lying there "trying" to sleep. I try for less than two minutes, and then I forget, and my brain is off on some topic.

On the few occasions in the past that I have had trouble sleeping (falling asleep, actually--I have never had a problem staying asleep), it has felt like time was dragging. Now? Time flies! I look at the clock and an hour has gone by.

I cannot believe it is 6:20.

Can't Sleep

I can't sleep! I have been awake for an hour. I had to use the bathroom, my left eye hurts (yes, left, not right), and I have tinnitus. Something is up with my body.

After a while, I started thinking about that meeting yesterday morning. I had a brilliant idea (the problem is not resolved; the meeting was mostly about bull-headedness and arguing). My mind just really wanted to think the situation through; it had been a half hour before I knew it. I tried to turn off my brain, but I found myself thinking about it again.

Finally, I got up and made some notes. Hopefully that will help me sleep. I am exhausted. I think that the work thing is not why I woke up, but it is keeping me up.

Double Vision

I had a rough morning! A rough day in general... but especially the morning.

I had double vision while driving to work today--all of the street signs. Everything was blurry. I could still see enough to drive; I was not going into the other lane or anything. I just had to know where I was going, because I could not read signs until I got close to them.

Then I was in a very stressful meeting, and I think I did okay with expressing myself and understanding people, but I was ready to drop after that meeting.

I was hot all day. At home I took my temperature, and it was slightly elevated: 99.1. Normally it is 97.4. It came back down about an hour ago. Maybe normal variation and I just happened to feel super hot today? A coworker put a fan on me today, which really helped.

Just rough.

It is raining today.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Dysesthetic pain: 4

-Paresthesias: 1, buzzing, crawling

-Numbness: 5, losing feeling in my right arm while teaching this evening, in my right thumb this morning, and in my legs off and on this afternoon and evening. Fun times.

-Vision: 4, as I said above, and my right eye hurt badly sometimes. 

-Nerve pain: 2

-Hearing: 1, tinnitus this morning

Motor:

-Walking: 2

-Sore muscles: 2, although I was very sore and stiff when I woke up... 6 or 7

-Fine motor: 3, I had trouble signing my name

-Weak muscles: 4

-Spasticity: 3

Cognitive:

-Processing: 1

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 6

-Balance: 1

-Sleep: 4

-Bladder: 0

-Proprioception: 1

-1: 0

-2: 5 I think, but I took two pills as soon at the first pang

Emotions: Fine, I guess. I did not think about things.

Crappy Day

My brain is shot, I am dead tired, my vision is blurry off and on, and I am trying to record my activities and symptoms every hour like the fatigue book recommended, but I keep forgetting!!

And there is a stink bug on the blinds. Just saying.

I practiced the piano piece for Sunday this morning and made just two or three minor mistakes. I guess I will run through it every day and let whatever happens happen on Sunday. I do not think there is anything more I can do to make my body work better. It is going to do what it wants to do. Hello, today I was able to play it despite feeling super crappy. Totally unpredictable.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Dysesthetic pain: 3

-Paresthesias: 1, buzzing in my foot

-Numbness: 1

-Vision: 3

-Nerve pain: 3

-Hearing: 1, tinnitus this morning

(But it is only 7:30. Prime pain time is just beginning.)

Motor:

-Walking: 4

-Sore muscles: 2

-Fine motor: 1

-Weak muscles: 6

-Spasticity: 4

Cognitive:

-Processing: 1

-Memory: 3

-Attention: 1

-Confusion: 1

General:

-Fatigue: 8

-Balance: 1

-Sleep: 1

-Bladder: 0

-Proprioception: 1

-X: 0

-XX: 5

Emotions: Continue to suck. As in, sucking back the tears. I was fine for most of today. Just waiting for them to catch up with me. I am predicting that I will have a sobbing breakdown on Friday.

I have felt some anger today. At having MS and also at various people. I think it is mostly because I am frustrated with my body and transferring emotions (totally making that up but betting it is a real psychology thing).