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Wednesday, September 26, 2012

Telephone Consultation with Nurse Titi

Today is a good day. My level of fatigue was a five on a scale of one to ten. I slept for only one hour. I got rid of some junk in the loft too.

I went to the gym for one hour and did some new shoulder exercises detailed in  Body Change by Montel Williams and Wini Linguvic. I also did 30 minutes of cardio on the stepper and on the treadmill. It was exciting to do some new exercises. I love doing shoulder exercises. :D
I did three sets of crunches too. Jimmy went with me to the gym at my request. He was my spotter for some lateral shoulder lifts. I am trying to increase my lateral shoulder lifts to 60 pounds and I can't do it alone. He also threw me a medicine ball when I came up from crunch on the reverse incline bench. The funniest part of that was that he almost fell over when I threw him back the ball. It was funny because right now he is long and lanky but one day I know he will have much more strength than I have.

A very nice nurse called me today to teach me about the shots I am starting. Her name is Titi and she is certified in MS.  Nurses are available via telephone 24 hours a day. Titi is going to train me on the administration of the medication. She ordered a training kit for me today.

This is a bullet list of everything I learned during our phone call:
  • I should contact the MS Society at 800-344-4867 and the MS Association of America at 800-532-7667 to learn as much as I can about MS. The MS Association of America has some cooling equipment to help me to stay cool when I exercise.
  • The medication Betaseron doesn't have to be refrigerated but shouldn't be left in a hot car. It should be placed in carry on luggage. It's okay to place it in the trunk but shouldn't be left there for too many hours.
  • I should call Dr. Lufti to ask him if he wants me to take Tylenol or Motrin before my injection. Tylenol or Motrin can minimize or eradicate any flu like symptoms of Betaseron.
  • It's best to take the medication at bedtime. On the nights I work I should take the medication the following morning before I go to bed.
  • I should continue my same exercise routine and there are people who play sports, run, and continue to travel and work on this medication.
  • Once I receive the training kit, I should call Titi to be trained.
  • Only 57% of people in studies experienced flu like symptoms. 37 % of people in a placebo group also experienced flu like symptoms. Ha.
  • I need to hydrate a lot taking this medication. I'm not sure how I could drink more water than I already do but we will see. ;) I'm already drinking about 72 oz of water a day.
Titi was kind and patient and helped allay my concerns.

I was told that I could receive an emergency 30 day kit to start the medication sooner. I declined that as I don't see this as an emergency. I think I should save that privilege for an emergency.

Beta Plus, the company that provides Betaseron is awaiting approval from my insurance company to start the medication. The approval should take a couple more day, they tell me.

Tuesday, September 25, 2012

Tuesday Ten

My friend Kilby used to post ten things she was grateful for every Tuesday. I've received so many blessings over the summer I'd like to start making a list as I did years ago.

I've listed eleven things today, unable to stop the praises at ten.

  1. I found out I have multiple sclerosis and I'm thankful to know. Perhaps it won't get worse and I can maintain my mobility, Lord willing.
  2. James is between projects and he can help me with the homeschooling. 
  3. The manufacturer of a medicine I am going to start soon called me to assist with the hefty  hefty co-pay.
  4. Two important apps on my  phone: My shopping list app and my Reminders app. I have to use them daily as my memory is very poor and foggy right now.
  5. My supportive co-workers.
  6. The ladies who brought me meals.
  7. My fabulous food with family and a bestie at Sweet Tomatoes this afternoon. 
  8. The photos Kilby posted of her cute Hilary with one l in her name. :)
  9. The chronic pelvic pain I had all summer ceased on 8/21/12. 
  10. Recently becoming content with extra virgin olive oil, coarse ground pepper, and balsamic vinegar for a salad dressing rather than the expensive sugary dressing I was using. It was a lite dressing and low in fat but had too much sugar and TOO much sodium. I'm always looking for ways to shy away from my love affair with sugar.
  11. I'm glad I made a switch to organic lettuce. It's so delicious and it stays fresh so much longer. Thankfully, it's on sale at Publix right now. I used to shy away from organic foods but once you learn you have an autoimmune disease you try to make some changes. Being a person who is ridden with various allergies I suspect that autoimmune disease are a result of either a virus or allergy of some kind. I read recently that many people with MS and lupus have a history of allergies. Interesting.

A Bad Day & A Better Day

This past Sunday was an absolutely terrible day. I got dressed for church and went downstairs to eat breakfast. All of a sudden I was overcome with crushing fatigue. I went back upstairs and got into bed fully dressed even down to my huge big hooped earrings. I thought I would skip Sunday school and aim to go to the Sunday service instead. But 15 minutes later a pretty little girl peered at me over my bed with a sad face. I found out she was disappointed that she would miss her Sunday school class. "I like the games and the candy," she explained. I felt sorry for her and we left for Sunday school. The fatigue never passed and it was a terrible day. I had to work that night too and it persisted throughout the night. Daily, I experience that fatigue anywhere from two to five hours but usually it starts in the afternoon, not in the morning. I wondered if there was something the Devil didn't want me to hear at church that morning. Thankfully, it was a slow night. I left early at 6 AM. I got some sleep and felt better on awakening.

After some food and drink I went to the gym and did some chest exercises and ab crunches. A friend at the gym suggested that I try some liquid multivitamins. I thought that was an excellent idea. I have some high quality vitamins that I used to use only one week a month before that special time of the month but they weren't touching my exhaustion. I took the liquid multivitamins last night and this morning. I do feel better today. I was able to reorganize my laundry closet and a kitchen closet. GASP. I haven't been able to organize anything for months.

The medication I'm supposed to start for multiple sclerosis is very $$$$. From what I've learned on the Internet, the average wholesale cost is $1,400.  My insurance requires that I pay 30%. The manufacturer called me today and stated that my doctor referred me to them for co-pay assistance. I was very grateful. I've been exhaling all day.

My symptoms lately are fatigue from two to five hours per day, requiring a nap or rest; lightheadedness at times; poor memory; and some weakness in my right arm every now and then. I also have difficulty digesting large pieces of information.

All said, God is good and He is continuing to bless me.

Saturday, September 22, 2012

♪ He's An On Time God, Yes, He Is! ♪

Four weeks ago I was at the mall returning and exchanging a couple of things. My right arm felt very weak.  I thought if I needed to wave at someone I would have to use my left hand to pick up that right hand for that wave. I thought of how it had happened about four times that week. I made it home and felt very weary. My right eye felt weird; my vision was blurry; my balance was off; and I felt incredibly fatigued. I wanted to nap but I was afraid I wouldn't wake up. My uncle recently died unexpectedly so I thought I better stay awake as best I can. I checked my blood pressure. It was 85/62. Usually my blood pressure is from 90 to 100 over 60.

I'd been taking a medication for endometriosis for eight days and I was worried that I was experiencing a stroke. I asked my husband to drop me off at the Emergency Department. I was admitted and I had a million dollar workup. The admission presented such irony for me because I had been sick all summer with pelvic pain 24 hours a day. I refused to go to the ER because I was convinced they would admit me. I ended up getting admitted anyway for something completely different.

Most of the tests I had  were to rule out a TIA, commonly referred to as a mini stroke. Most of my tests were negative except for an MRI of the brain which showed lesions on my brain as seen in diabetes, strokes, hypertension, and MS. The neurologist I saw was certain I didn't have the former three. He suspected the latter based on my symptoms.

The last day of my hospital stay I had a lumbar puncture. I was nervous but relieved to learn that they use guided X Ray to find just the right spot for the removal of the spinal fluid. It was much less dramatic than the spinal taps I've assisted with as a pediatric nurse, and less painful than an epidural as well. I did have a moderate headache for about four days afterward.

The results the doctor needed for further confirmation took four weeks to come back. The protein that is elevated in MS was elevated in the spinal fluid. The neurologist, Dr. Lufti, would like me to start injections every other day to prevent further relapses and to maintain my mobility.

My main symptoms right now are extreme fatigue and poor short term memory recall. I have from two to five hours of extreme fatigue a day which require rest and usually long naps. The fatigue is somewhat depressing. Mornings are good. Late afternoons are the hardest. My work shifts are difficult, especially from 3 AM onward. I am now making full use of the Reminders app on my iPhone. What a Godsend for me. I can't leave a grocery store without triple checking my Shopping List app either.

I'm happy to know that I have multiple sclerosis. I'm glad to find out why my eyeglass prescriptions only seem helpful for about six months. I understand too why my right hand was swollen for about six months three years ago, making it even difficult to maneuver the steering wheel. I was told I had a trapped nerve. It was indeed a nerve problem. :) About a year ago I had a couple of incidents in which I couldn't find my way thru two neighborhoods very well known to me. I had numbness and tingling in my face and loss of balance after a flu shot about three years ago. That too was a relapse. Anesthesia  seems to give me relapses as well. I've had numbness and tingling on the top of my feet since 2009. I thought it was because I had flat feet. No, that's not it. God is good and I'm glad to have answers.

Now I can make some adjustments in my lifestyle that need to be made. One major adjustment is I'm saying no to many things. I'm not doing much besides going to the gym, church, work, and a little shopping at Publix, Wal Mart, and Aldi. I also decreased my gym workouts from 90 minutes to 60 minutes. The neurologist says I shouldn't be exercising to the point of complete exhaustion so I take my foot off the accelerator when I start to feel very taxed. I'm not going to the gym right after my 12 night shift any longer. I delay that day's workout until I've had some sleep and food. Grin.

I am so grateful that I never knew until now that I had MS though. I would have babied myself at the gym and I would have convinced myself that I was not able to get fit. Thankfully, I have lost 13% body fat since 2009 and I've lost 20 pounds. Don't be concerned that I did something in the gym to give myself MS. I started my exercise routine after my first relapse in 2009. Exercising actually improved the symptom I was having at the time. My swollen and painful right hand slowly returned to it's normal size.

Another blessing is now I have more time to relax and read. I like that. I've read The First Year: Multiple Sclerosis: An Essential Guide for the Newly Diagnosed. Now I'm reading one of four of Montel Williams' books.

Please pray that the injections won't make me very sick. Dr. Lufti asked me not to judge the medication by the first two months. Please pray that I can keep making simple meals, that I would be well enough to check the boy's school work, and that I would be able to complete my scheduled work shifts. I need to keep centered on Christ and not go back to my old ways of comforting myself with sugar.

I've had so many blessings throughout this summer. I've been listening to some gospel music I was never exposed to. The music is very encouraging with lyrics that are catchy and easy for me to recall throughout my day. He's An On Time God, as Dottie Peoples sings, in that old school black gospel song. Oh yes, He is! Amen?!?

God Bless!