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.

Steroids Have Not Killed Me Yet

That help at church was so helpful. I love that I can come home and not collapse for hours. It is seriously such a blessing!

I hate doing PT homework! What a pain in the neck. One more day... can't wait to be done.

PT Homework
Asleep at 9:45. Woke up around 1:00? went back to sleep. Woke up at 4:00. Got out of bed at 5:10.

5:30
F 9, S 5, p 6, v 1, c 2, LLW 6, RLW 4, law 2, raw 2, d 3 (lights still off though)
Laid in bed 10 minutes, got out of bed, got my laptop from under bed, walked 25 ft to couch. Sat on couch and did FD on phone, read scriptures on phone. Back to bed at 5:28. 


Slept about briefly around 7:00, then about 8:15-8:45.

9:30
F 7, s 5, p 8, v 4, c 2, leg w 7, law 1, raw 5, d 2
Laid in bed until 9:15. Got up, walked 20 ft, picked up laptop and carried it 12 ft then down stairs then 6 ft. Sat on couch using laptop. Back hurts!


10:00
F 4, S 2, p 7, v 3, c 1, leg w 6, arm w 3
Sat on couch and blogged. Took gabapentin, ala, alc, vit b12, lactase. Ate breakfast.

10:30
F 7, S 6, p 3, v 4, c 1, leg w 5, law 2, raw 6
Sat on couch and wrote email 15 min. Walked 6 ft, up stairs, 10 ft, potty. Walked 14 ft, sat on bed to do FD on phone and drink water. Walked 15 ft, stood to shower. Arms up to wash hair and face. 


11:00
F 6, a 3, p 6, v 4, c 0, leg w 6, law 2, raw 6, d 1
Finished shower. Stood to dry off and collect goods. Sat to read email and do FD while putting on a variety of facial and body products. Went downstairs, walked 20 ft, stood briefly for a picture, walked back upstairs to bathroom. Brushed hair, put in products (arms up). Sat on landing and rested arms a minute. 

11:30
F 3, s 5, p 4, leg w 2, law w 1, raw 4, d 0
Sat and used both arms to dry and brush hair. Stood to fix hair (less than five min). Walked 20 ft, sat at vanity for makeup and music. Went potty. Took 800 mg ibuprofen. Walked 16 ft. Stood to choose clothing and dress. Back to vanity for makeup.

12:00
F 6, s 3, p 7, v 4, c 0, weak w 6, law 1, raw 8, d 0
Finished makeup--arms up a lot. Potty. Downstairs, used laptop, sat on steps to put on shoes. Upstairs got coat. Downstairs got church bag and purse. Walked 120 ft to car. Sat and did FD in phone.  Took cranberry.


12:30
F 4, s 0, p 4, v 4, c 1, leg w 3, law 1, raw 5
Rode 15 min. Walked 200 ft. Sat and participated in choir practice.

1:00
F 7, s 1, p 6, v 4, c 1, leg w 5, law 1, raw 5
Choir practice, walked 30 ft, sat and wrote a note, chatted 5 min in ASL and English

1:30
F 7, s 3, p 5, v 4, c 0, leg w 5, law 2, raw 6
Sat and interpreted ASL.


2:00
F 5, s 0, p 4, v 4, c 3, leg w 4, law 4, raw 7
Sat and supported learning interpreter 20 min. Interpreted 10 min.

2:30
F 3, s 2, p 2, v 3, c 2, leg w 6, law 5, raw 7
Sat and interpreted 10 min, stood chatting 2 min, walked 300 ft, sat and chatted 5 min in ASL and English. Sat listening to class as supporting learning interpreter. 


3:00
F 3, s 3, p 7, v 4, c 2, leg w 7, law 2, raw 5
Sat and supported learning interpreter. 


3:30
F 3, s 4, p 8, v 4, c 2, leg w 5, law 2, raw 3
Sat and supported learning interpreter. Took gabapentin at 3:10. Chatted ASL 5 min. Break 5 min. Sat and interpreted.

4:00
F 5, s 4, p 5, v 4, c 3, leg w 3, law 3, raw 5, d 2
Sat and interpreted ASL. 

4:30
F 5, s 4, p 4. V 4, c 3, leg w 8, law 0, raw 6
Sat and chatted five min, stood and chatted a minute, walked 50 ft, rode home 10 min. Walked 120 ft. Stood chatting 3 min. Took off coat etc standing. 


5:00
F 7, s 1, p 1, v 4, c 3, leg w 6, law 0, raw 5, d 4
Walked 15 feet, sat at computer briefly. Got up and walked 12 ft, up stairs, 12 ft. Bathroom. Walked 15 ft. Changed clothes standing up. Hung up skirt, etc. Tidied up. Walked downstairs. Walked 25 ft. Sat on floor, conversed in ASL. Got up and carried full mugs 15 ft. 

5:30
F 8, s 3, p 2, v 3, c 2, leg w 7, law 1, raw 6, d 3
Walked looking for remote. Sat/ reclined on couch eating and watching movie, some ASL use. Took prednisone, vit d, cranberry, milk thistle. 


6:00
F 4, s 5, p 7, v 4, c 2, leg w 7, law 1, raw 5, d 3
Took protonix 5:45. Sat on couch watching movie. Rested head. Some ASL chatting. Some cell games. 


6:30
F 6, s 6, p 4, v 4, c 2, llw 6, rlw 4, law 1, raw 3, d 1
Built a fire. Carried wood 15 ft back and forth. Walked 35 ft. Sat on couch watching movie and using laptop. Walked 30 ft. Sat on couch watching movie and using laptop.


7:00
F 3, s 7, p 5, v 4, c 0, leg w 5, law 0, raw 3, d 0
Sat on couch watching movie and using laptop. Walked 30 ft for snack.


7:30
F 4, s 6, p 7, v 4, c 1, leg w 6, law 0, raw 3, d 3
Walked 25 ft, stoked fire. Sat on couch using laptop and explaining in ASL.

8:00
F 5, s 6, p 4, v 4, c 2, leg w 6, law 1, raw 5, d 2
Sat on couch using laptop and explaining some in ASL.


8:30
F 6, s 6, p 5, v 3, c 2, leg w 5, law 0, raw 3, d 2
Sat on couch using laptop. Walked 15 ft plus 2 steps up and down to bathroom, back same way.  Sat on couch, chatted in ASL.

9:00
F 4, s 5, p 4, v 4, c 2, llw 5, rlw 6, law 1, raw 5, d 0
Sat on couch working on laptop.


9:30
F 5, s 4, p 4, v 4, c 1, leg w 6, law 0, raw 4, d 2
Sat on couch writing email.

Daily Data
Sensory:

-Pins and needles: 1
-Tingles: 1
-Dysesthetic pain: 6
-Paresthesias: 0
-Numbness: 1
-Vision: 4
-Nerve pain: 2
-Hearing: 0

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

Cognitive:
-Processing: 2
-Memory: 1
-Attention: 1, had a lot of difficulty shifting my focus 
-Confusion: 0

General:
-Fatigue: 6
-Balance: 3
-Sleep: 4 (6 hours, woke up around 4:00. I did get in another half hour around 8:00.)
-Bladder: 3
-Proprioception: 1
-Swallowing: 0
-A: 0
-B: 6, took something

Emotions: Fine. I had a relaxing morning getting ready for church. And I was happy at church.

Good But Hard

I got a lot of rest this morning, because I was so darn tired. When I felt worn out, I rested. So it took me like two hours to shower, get dressed, do my hair and put on a little makeup. Oh, well. I had nothing else to do this morning. Or if I did, I forgot!

PT Homework
Sleep: Woke up at 5:20 (about 7 hours of sleep), tired but could not sleep more. Took Tylenol at 5:25. Lights on at 6:40.

7:00
F 7, s 5, p 6, v 3, c 1, leg w 3, arm w 3
Got up to get my laptop from under the bed. Sat on bed and read email. Headache, not feeling well. Cold. Took Aleve. Sat on bed and blogged, typed email.


7:30
F 2, s 3, p 5, v 2, c 2, leg w 5, law 1, raw 2
Some ASL chatting. Walked around living room, kitchen total abt 60 ft, walked upstairs. Ran bath, walked 8 feet to landing, sat and typed on phone while waiting. Got up and used bathroom. Stood to undress, sat in bath.

8:00
F 1, s 0, p 0, v 3, c 2, leg w 0, law 0, raw 1
Sat in bath (way too cold in here!)

8:30
F 2, s 1, p 3, v 4, c 2, leg w 4, law 1, raw 5
Got out of bath, stood to dry. Stood to dress. Walked 10 feet, downstairs, 8 feet. Sat on couch, used laptop. Chatting in ASL. Sat playing phone games. Took gabapentin, vit B12, acetyl l-carnitine, alpha-lipoic acid, lactase. Used ASL to bless food.


9:00
F 3, s 3, p 4, c 1, leg w 4, law 0, raw 5
Sat on couch: ate, chatted in ASL, played phone game. Walked 5 feet, upstairs, 8 feet, bathroom. Walked 8 feet, sat on bed. Stood on bed and leaned to see out window. Walked 12 feet, downstairs, 5 feet. Sat on couch, talked on phone holding it in right hand. 


9:30
F 6, s 4, p 2, v 4, c 2, leg w 5, law 1, raw 5
Sat on couch, talked on phone. Conversed in ASL. Played phone games. Walked 6 ft, upstairs, 12 ft, bathroom. Walked around getting ready for shower, total about 40 ft.


10:00
F 9, s 2, p 3, v 4, c 2, LLW 3, RLW 6, law 1, raw 6, d 4
Stood to shower. Arms up to wash hair and face. Stood/bent to shave. Stood to dry off. Stood for eye cream, etc. Walked 4 ft, sat on landing for moisturizer and body lotion. Stood in bathroom to put away lotions and towel, use deodorant. Walked 12 feet, put on underwear. Laid on bed five minutes. 


10:30
F was 10 at last check in
F 6, s 1, p 5, v 4, c 1, leg w 4, law 0, raw 7
Laid on bed eyes closed 20 min. Went potty. Laid on bed playing phone game. 


11:00
*took Tylenol at 10:50
F 5, s 2, p 4, v 4, c 3, leg w 3, law 2, raw 6, d 2
Sat on bed doing FD and planning what to do next. Quick phone call (r arm up). Walked 6 ft, stood to chose clothes and dress. Walked 15 ft, stood to use hair products. Sat on landing to blow dry and brush using both hands. Tried to lean arms on legs bc feeling weak. Went potty. Stood to fix hair. Walked 12 ft, sat at vanity to begin makeup. 


11:30
F 2, s 2, p 4, v 4, c 1, leg w 3, law 2, raw 6, d 3
Sat at vanity, sent email on phone, slowly did makeup. Tried to lean arms on knees or table. A little ASL chat. 


12:00
F 5, s 0, p 2, v 4, c 2, leg w 5, law 2, raw 5
Walked 15 ft, went potty. Walked 12 ft, sat on bed to decide what to wear. Too tired to get up. Friend came, chatted in ASL. Trying to push fluids.

12:30
F 7, s 1, p 3, v 3, c 2, llw 6, rlw 4, law 1, raw 4, d 2
Sat on bed thinking what to wear. Walked back and forth 7 ft to closet 3-4 times with clothes. Walked 12 ft, went potty. Walked 8 ft, down stairs, 25 ft, back up stairs with toilet paper. Went potty. 


1:00
F 4, s 2, p 2, v 4, c 1, LLW 4, RLW 3, law 1, raw 4, d 2
Walked downstairs. Tidied up living room. Sat on couch collecting pills for pm. Played phone game. Brief ASL and English chats. 


1:30
F 4, s 1, p 2, v 4, c 3, LLW 4, RLW 3, arm w 3, d 2
Sat on couch playing game and using ASL. Went to kitchen for snack. Went upstairs for potty. Sat on couch. Walked around a bit, got snack. Stood and chatted a minute. Went out with friend. 


2:30
F 3, s 0, p 2, v 4, c 2, weak 4
Went out with friend for long lunch.

3:00
F 5, s 0, p 2, v 4, c 2, weak 4
Still at lunch, sitting in booth

3:30
F 8, s 1, p 2, v 4, c 1, weak 5, d 3
Finished lunch, bathroom, riding in car


4:00
F 6, s 4, p 3, v 4, c 2, weak 5
Rode in car to DC

4:30
F 8, s 4, p 7, v 4, c 3, weak 6
Walked 500 ft into building, up two flights stairs, changed clothes, sat, stood 5 min.

5:00
F 8, s 2, p 4, v 3, c 2, weak 4
Walked 200 ft, up in elevator, walked 300 ft holding friend's arm, sat and chatted in ASL and English, walked 40 ft, sat and waited to watch movie.

5:30
F 8, s 4, p 2, v 2, c 1, weak 2
Sat watching movie.

6:00
F 7, s 2, p 7, v 1, c 1, weak 2
Sat watching movie. Took immodium.

6:30
F 3, s 1, p 7, v 1, c 1, weak 2
Sat watching movie

7:00
F 2, s 1, p 5, v 1, c 1, weak 3
Sat watching movie, got up and stood 7-8 min chatting, walked 70 ft, sat on couch chatting

7:30
F 7, s 2, p 6, v 3, c 0, weak 6
Walked 200 ft, changed clothing, walked 400 ft, sat on couch chatting five min. Walked 200 ft holding friend's arm. 


8:00
F 4, s 1, p 4, v 4, c 1, weak 6
Walked 80 ft, stood ten min, carried plates. Took prednisone, cranberry, milk thistle, vit d, lactase. Chatted English and ASL.

8:30
F 6, s 3, p 5, v 4, c 1, weak 5
Sat and ate dinner. Walked 80 ft holding friend's arm. Chatted in English and ASL. 


9:00
F 9, s 4, p 4, v 2, c 1, leg w 8, arm w 6
Rode home 15 min. Walked 30 ft across snow, 40 ft on sidewalk. Upstairs, changed clothes, sat on bed chatting in ASL.

9:30
F 9, s 5, p 5, v 2, c 2, leg w 8, arm w 5
Five min chatting ASL. Bathroom. Brushed teeth sitting on bed. Stood to wash face. Walked back to bed, sat and blogged. Lights out at 9:30.





Daily Data
Sensory:

-Pins and needles: 2
-Tingles: 1
-Dysesthetic pain: 6
-Paresthesias: 0
-Numbness: 1
-Vision: 4
-Nerve pain: 3
-Hearing: 1

Motor:
-Walking: 5, between the MS stuff and the stiff steroid joints
-Sore muscles: 1 (pretty sure tons of Aleve and Tylenol helped)
-Fine motor: 3
-Weak muscles: 6
-Spasticity: 2 (I wonder if Aleve helps? Or lots of rest?)

Cognitive:
-Processing: 2
-Memory: 1
-Attention: 1
-Confusion: 0

General:
-Fatigue: 8
-Balance: 4
-Sleep: 2 (7 hours--absolutely not enough but I could not sleep once I woke up)
-Bladder: 3
-Proprioception: 1
-Swallowing: 0
-A: 0
-B: 7

Emotions: Up and down. It has been a rough few days. I saw my best friend of I don't even know how many years, which was good but hard. Life is good but hard. Things were hard with my friend, because we did not get enough time to talk, and now I miss her a lot.

Continuation on Avonex

Avonex side effect management, continued (and recapped from yesterday, so that I have it all in one place).

I drank several bottles of water, mostly during the afternoon and evening. This was as much to manage the effects of the steroids as the Avonex.

-4:30 pm - 1000 mg ibuprofen

-5:10 - shot - Ouch! Forgot to pull the skin taut..  the needle did not just slide in. :( Note to self: review the directions every time.

-5:30 - 1000 mg Tylenol

-9:30 - 1000 mg Tylenol

-9:30 - 440 mg Aleve

-Felt crappy all evening, but did all day anyway. No bad flu.

-Asleep by 10:00, woke up at 5:20.

-5:25 am - 1000 mg Tylenol, tried to sleep more but couldn't. Boo.

-6:45 - 220 mg Aleve (because I just had one pill on my nightstand). Headache, achy in general. Got up and began pushing fluids again.

-Still no fever or chills. Maybe the aches are from Avonex, maybe not. Steroids are rough for me, and I am cold, which tightens up my muscles anyway. I do not normally get headaches but have for the last few days, while on steroids.
-7:05 - 220 mg Aleve, feeling better
-10:50 - 1000 mg Tylenol
-Feeling worse, began pushing fluids again, which helped.
-3:00 - 1000 mg Tylenol, 220 mg Aleve
-7:30 - 1000 mg Tylenol

I felt crappy all day but that was exactly how I had felt the day before.. and the day before that. I am in a pretty nasty relapse right now, plus I am on steroids, which do not tend to agree with my body. I think the Avonex stuff was controlled by Aleve (and Tylenol?) and fluids.

It's That Time Again!

Yes, Shot Day has returned already.

Shot Plan
4:30 - 1000 mg ibuprofen (I have high tolerance)
5:00 - shot
5:30 - 1000 mg Tylenol
9:30 - 1000 mg Tylenol
10:00 - 440 mg Aleve
bed...

That Aleve should carry me through to at least 6:00 am, if not 8:00 or later. I will take Tylenol if (when) I wake during the night. I am resolved to do that, even if I am tired.

Tomorrow I am planning to take two more Aleve when I get up. Well, depending on what time I get up, I might take some ibuprofen and then Aleve four hours after that. I have plans tomorrow that involve not getting up much between 4:00-6:00, so I need to make sure my meds carry me through that. I guess I will do the math and plan it when I get up tomorrow.

Shot Actual
4:30 - 1000 mg ibuprofen
5:10 - shot (OUCH! forgot to pull the skin taut.. used the side of my thigh.. not sure which but I think the skin tautness, because the needle did not just slide in)
5:30 - 1000 mg Tylenol
9:30 - 1000 mg Tylenol
9:30 - 440 mg Aleve
Felt crappy all evening, but did all day anyway. No bad flu.

Steroid Update
I had a headache a few times and got VERY dizzy at one point this afternoon. I have felt sickly much of the day. I am blaming the steroids for these problems. Also, the skin on my hands wrinkled up and seemed very dried out. I started pushing fluids and began to feel better in general. Hmmm...

PT Homework
And I kept my PT diary again today. Because I am such a good student. And today I was much better about actually doing it on the half hour and not trying to reconstruct after an hour. Hey, I did my best.

Sleep: Slept 7 hours, awake since 5:15. Turned on the lights at 7:00.

7:30 am
F 3, s 3, p 2, v 3, c 1, leg w 2, arm w 1
Sat in bed, listened to scriptures, read email, wrote email.

8:00 am
F 1, s 1, p 2, v 3, c 1, leg w 2, arm w 2
Wrote email (still sitting in bed).

8:30 am
F 7, s 2, p 3, v2, c 0, leg w 6, law 1, raw 6
Got up, walked 12 feet to bathroom, used bathroom, took shower (standing, arms up to wash hair and face). Needed break for right arm. Stood to dry off. Stood and used r arm for moisturizer, eye cream, acne cream, hair products, body lotion.

9:00 am
F 7, s 2, p 3, v 3, c 1, leg w 6, law 1, raw 6
Walked 12 feet to bedroom, put on underwear while standing. Walked 8 feet to landing, sat and blow dried my hair. Both arms up and working. Needed break for both arms. Walked 4 feet to bathroom, stood to flat iron hair. Walked 15 feet to vanity table and sat to put on primer. Walked 20 feet into bedroom, sat on bed and chatted in ASL for five minutes. Got up and walked 5 feet to closet, stood to chose clothing and dress. Walked 15 feet to bathroom (threw socks on landing on the way), used toilet, stood to wash hands. Walked 20 feet to vanity table, sat to begin makeup.

9:30 am
F 3, s 1, p 3, v 4, c 0, leg w 3, law 1, raw 5 (sore)
Sat and did quick makeup job. Walked 12 feet to landing, picked up socks and laptop, carried them downstairs to living room. Sat on floor and used laptop to make notes about activities while friend made breakfast. Got up and sat on couch to eat. ASL chatting during breakfast and a bit after. Took morning meds: gabapentin, acetyl l-carnitine, alpha-lipoic acid, and B12.


10:00
fatigue level 4. Vision level IV. Cognition level 0. L LW level 7. R LW level 7. Law 1. Raw 4
Chatted five minutes in ASL. Walked upstairs to use bathroom. Walked back downstairs, got shoes. Sat on stairs to put on shoes. Walked 120 feet to the car. Drove to work – eight minutes. Sat in the car for two minutes. Put stuff in trunk, got clipboard from backseat. Walked into work 100 ft. Hung up coat, walked 20 ft to work with student. 


10:30
F 9, s 1, v 3, c 2, leg w 7, law 2, raw 4
Sat on hard child chair, playing house and encouraging interaction and behavior with three 3 y/o. Noisy, chaotic room. Wrote one page note.

11:00
F 6, s 1, v 3, c 1, leg w 4, law 1, raw 5
Walked 15 ft to cubbies, stood to put away notes, gathered my stuff, walked 60 ft to next student. Sat on plastic child chair while conversing quietly and building with tough stretchy toys. wrote one page note.


11:30
F 9, s 0, p 1, v 4, c 2, leg w 5, law 2, raw 5
Gathered thing, stood while putting away notes, walked 10 ft to bathroom, walked 75 ft to car. Drove 8 min to next school. Walked 150 ft into building straight to bathroom. Stood to wash hands and air dry. Walked 100 feet to classroom student talk to teacher five minutes walk 8 feet to next classroom student talk to teacher five minutes. Want 50 feet to car.


12:00
F 7, s 2, p 1, v 2, c 1, leg w 6, arm w 3
Drove home 7 min, walked 120 ft to house. Walked 20 feet to thermostat, walked 12 feet to computer chair. Sat at computer with legs up on a padded stool, reading email, etc. Feel sickly.


12:30
F 8, s 4, p 1, v 2, c 1, leg w 5, arm w 3
Sat at computer. Noticed tensing (straight out, crossed at ankles) legs, consciously relaxed them. Wrote email.


1:00
F 6, s 3, p 5, v 2, c 1, leg w 2, arm w 4
Sat at computer. Worked on my schedule, emailing, looking up info online.


1:30
F 9, s 5, p 5, v 2, c 1, leg w 5, arm w 4
Got up, walked 30 ft to bathroom. Stood to wash and dry hands. Walked 30 feet and sat in computer chair. Got up two minutes a later and walked 30 feet to kitchen for snack. Walked 30 feet back to computer. Sat at computer working.


2:00
F 9, s 2, p 4, v 1, c 2, leg w 2, arm w 4
Walked 8 feet to couch, 8 feet back to chair, 8 feet back to couch. Ate lunch. Brief ASL conversation. Walked 8 feet back to computer. Sat 5 minutes at computer. Feel sick still. Diarrhea all morning.


2:30
F 6, s 5, p 6, v 1, c 1, leg w 5, arm w 2
Sat working at computer. Took a phone call. Legs up, crossed at ankles, on padded stool. Still feel sick.


3:00
F 3, s 3, p 3, v 2, c 1, leg w 3, arm w 2
Sat working at computer. Legs up on padded stool. Feeling better.


3:30
F 2, s 1, p 3, v 2, c 1, leg w 2, arm w 1
Walked 5 feet to fireplace, 25 feet to kitchen, stood washing hands. Walked 20 feet, up stairs, 12 feet to closet. Chose clothes, changed while standing, went back and chose a different shirt, changed again while standing. Walked down stairs, 12 feet across living room. Put a log on the fire. Walked 5 feet to computer chair. Feeling lots better.

4:00
F 2, s 1, p 6, v 2, c 1, leg w 2, arm w 1
Sat and worked at computer. Legs down made them hurt more.

4:30
F 3, s 4, p 5, v 2, c 1, leg w 4, arm w 2
Sat and worked at computer, got up and went a few feet to put a log on fire, back to computer chair. Took gabapentin and cranberry at 4:20. Took 1000 mg ibuprofen at 4:30.


5:00
F 4, s 4, p 5, v 4, c 0, leg w 2, law 1, raw 4
Sat on couch, played games on phone. Some chatting in ASL. Walked 20 feet plus 2 steps up and down each way to potty.
5:00
F
Walked to kitchen and took ibuprofen. Walked 30 ft to use bathroom (up 2 stairs and down 2). Stood to wash and dry hands. Walked 10 ft to living room, back up two stairs to bottom of stairs, back down two stairs and 10 ft to get something and bring it 15 ft to couch.

5:30
F 8, s 5, p 8, v 4, c 0, leg w 5, law 1, raw 5, d 5
Avonex shot at 5:10. Rested on couch watching tv. Walked 10 feet to help with fire, walked 30 feet to kitchen. Lifted crock pot, carried 4 feet fridge to counter. Walked 20 feet to living room couch. Feeling dizzy.


6:00
F 7, s 5, p 7, v 3, c 1, leg w 2, law 3, raw 4, d 0
Ate dinner. Took cranberry, milk thistle, vit d, protonix, prednisone. Got up walked to fire helped tend it. Sat on couch and watched tv. Some ASL chatting. 

6:30
F 9, S 3, v 3, c 0, legs w 3, arm w 3
Sat on couch, blogged, watched tv. 

7:00
F 9, S 3, v 3, c 0, legs w 2, arm w 4
Laid on couch, watched tv. 

7:30
F 7, S 2, v 3, c 0, legs w 6, arm w 2
Walked 20 ft to kitchen, carried medicine bottles back to couch 20 ft. Sorted pills. Sat on couch going online and watching tv. 



8:00 pm
F 4, S 4, p 4, v 3, c 0, legs w 5, arm w 3
Sat/reclined on couch, using laptop to shop Amazon, watching TV. Got up and walked 20 feet to get ice cream, moved around kitchen, 20 feet back to couch. Ate my ice cream cone with one hand and typed this with other hand.


8:30
F 7, s 1, p 5, v 4, c 0, leg w 5, arm w 4
Reclined on couch listening to movie and playing phone games. 


9:00
F 6, s 2, p 4, v 4, c 1, leg w 4, law 1, raw 3
Reclined on couch listening to movie, playing phone games. 


9:30
F 7, s 5, p 4, v 4, c 2, leg w 4, arm w 1
Played phone games sitting on couch. Walked 15 feet and back. Took gabapentin, Aleve, and Tylenol. Walked 12 feet then upstairs then 8 feet to bathroom. Stood to put on moisturizer, get tooth stuff. Walked 12 feet, sat on bed to floss and brush. Walked 12 feet back to bathroom, 12 feet back to bed. FInished fatigue diary and bed!

Daily Data
Sensory:

-Pins and needles: 0 (maybe those steroids are kicking in)
-Tingles: 0
-Dysesthetic pain: 4
-Paresthesias: 0
-Numbness: 2
-Vision: 4
-Nerve pain: 5
-Hearing: 1, it has acted up and night sometimes. Maybe that is the only time it is quiet enough to hear the tinnitus. It sounds fuzzy, kind of likes bugs when you're camping.

Motor:
-Walking: 2
-Sore muscles: 5
-Fine motor: 3
-Weak muscles: 5
-Spasticity: 4

Cognitive:
-Processing: 2
-Memory: 1
-Attention: 0
-Confusion: 0

General:
-Fatigue: 8
-Balance: 4
-Sleep: 2 (7 hours)
-Bladder: 0
-Proprioception: 0
-Swallowing: 0
-A: 0
-B: 8

Emotions: Fine! I haven't read any MS books lately, lol. I am excited to see an old friend tomorrow!

And I am slightly worried about my liver. Painkillers, meds, supplements, steroids, and interferon (Avonex). That is a lot to handle. I hope that milk thistle is helping...

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.