13 Things I Wanna Do with 2013

1. Read a chapter of the Bible a day.
2. Read Jesus Calling and listen to Him.
3. Memorize Bible verses.
4. Spend more quality time with Isabella.
5. Organize my life and my “stuff.”
6. Write more. 
7. Channel my MS into something positive.
8. Write at least 13 flashback essays.
9. Submit my writing to at least 2 places.
10. Stress less.
11. Procrastinate less.
12. Get back on yoga routine.
13. Blog more.

Season of Thanksgiving

Since February 29, 2012, my MS Day, I have been more aware of my blessings.  A very hard season of personal losses in my workplace has made me very aware of my blessings, the things I am thankful for, and the things I take for granted.  It is such a shame that sometimes it takes tragedy and hardship to recognize those things.

Before we ate lunch this past Thursday, my family went around my grandfather's living room telling what each person is thankful for.  We started with my 2 and a half year old daughter who said she is thankful for her grandparents.  (A statement which she reiterated several times while she ate.)  It was a meaningful moment for the family when we recognized what we are thankful for.  The main thing we were thankful for- family.

I am very thankful for my parents.

I am thankful for my job.  It is hard some days.  It is challenging.  It is rewarding.  I have a job unlike some people who are suffering job loss in this crazy economy.

I am thankful for my health.  I have Multiple Sclerosis.  I don't have cancer like the unfortunate people who shared the 6th floor of the hospital the day I was admitted to start treatment for that initial MS episode.  I don't have double vision.  My legs might be hurting today, but I can still walk.

I have to focus on these things to get past the hard spots that creep up when dealing with a chronic disease and the everyday worries of life.

We begin the Holiday Season with Thanksgiving to acknowledge and remember all the things we have to be thankful for.  Black Friday and Cyber Monday fade into December and the Christmas season.  But somewhere between shopping and checking our bank accounts to see if there is money to live on until January, we miss Advent.

Advent, that quiet marker of the holiday season, a time when we count down the days to our Savior's birth.  Advent, a time when I become more aware of the most important thing I have to be thankful for- the birth of Jesus Christ.  I'm ready to start the countdown to Jesus' birthday!

World MS Day

World MS Day is Wednesday, May 30.  I really like the World MS Day website.  After clicking through the intro about MS, MS patients' postcards are presented in which they tell their stories.  The ones that I've read through inspire me to trudge along though this wacky illness.  Today is the 3 month anniversary of my MS Day.  My originally story is here.  Double vision is gone, but fatigue is here.  Random muscle contractions are here.  Random itching spells hit.  Pins and needles poke me randomly.  I give myself Betaseron shots every other day.  I have hot flashes from the Betaseron.    I practically melt in the sun.  I don't look sick.  People ask how I am- I'm okay.  I have up days, down days, up moments, down moments.  This is hard, but it could be so much worse! 

More MS videos

I had only looked at 1 MS video on YouTube before, but with World MS Day approaching, I'm finding a lot of videos (and I'm looking more).  I don't like to look at too many other people's MS stories at once because they bog me down and make me feel "woe is me."  But these are pretty good about showing what it's like.

I do not care for all the references to being drunk or on weed since I don't have that frame of reference, but otherwise, her descriptions are pretty right on.

Distinctions

Since February 29, I have learned the difference between

• being tired
• being sleepy
• being fatigued
• and being exhausted, running on empty no reserves left, exhausted
• and then I push to finish one last thing
• which reminds me of just one more little thing I need to do like finish this post
• and it's getting close to lunch time...... I will eat then nap, or maybe I'll just nap

I'm too exhausted to write abt MS fatigue, so here's a video

Good little video

I just ran across a short, simple explanation of MS.  MS doesn't always mean wheelchair.

How We With MS Feel

From www.patientslikeme.com 

My symptoms

When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below...

Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of Novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

Tingling: Stick your finger in an electrical socket - preferably wet.

Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one... Bzzzzzzzzzzzzzzzzzz
Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
Urgently Needing to Pee: We put a .5 litre remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet... Get a very large tattoo in your most sensitive area.

Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

Bowel Problems: Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there
till tears appear.
Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead... optional of course.
Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms..... hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.
Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

Swallowing: Try swallowing the hottest chilli pepper you can find.

Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms - welcome to our world.

Then Finally...
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counselling is the answer.

April showers bring Mayflowers and Pilgrims and Spring

This is the day the Lord has made;

This is the day the Lord has made; 

let us rejoice and be glad in it.  Psalm 118:24

There's the silly refrain about April showers bringing Pilgrims and Mayflowers, but this week is like Thanksgiving in April for me.  In November we focus on what we're thankful for and kinda forget it the other 11 months of the year.  A very positive side effect of MS has been thankfulness and gratitude.  I am so thankful for my parents and the many people who have helped me during the first, dark days of this illness.  I am so grateful that this is only MS and not a brain tumor or cancer or something scarier.  

Spring means a lot to me this year.  Spring is the season of new life, new beginnings, fresh, warm air.  It's the wake up call out of hibernation after a long, cold winter.  (Granted, we totally missed the cold, snowy part.)

For me spring began last Friday, a somber, gray day to Christians.  After finally successfully driving my father to and from school on Thursday, I drove myself to school on Friday.  I felt more like myself than I have in what seems like a really long time.

I had a wonderful Easter weekend.  Trixie dyed and hunted eggs for the first time. She had so much fun that she gave up naps for three days, but hit the hay early each night.  I've driven, shopped, read, written, and cooked-  the things I love to do but haven't done much of lately.


I write because I believe God wants me to write.  I put it here because my experience might serve of some benefit to another person somewhere on this worldwide web.  I put it here to remind me of what God is doing and what I believe He wants me to do.

And then God answered: "Write this.
   Write what you see.
Write it out in big block letters
   so that it can be read on the run.
This vision-message is a witness
   pointing to what's coming.
It aches for the coming—it can hardly wait!
   And it doesn't lie.
If it seems slow in coming, wait.
   It's on its way. It will come right on time. 
Habakkuk 2:2-3 MSG

Frustration

Frustration is the BIG side effect of MS for me. This time last month I was recovering from an “episode” …. In some ways I am still recovering from it.

My pharmaceutical insurance drug its feet in approving my Betaseron injections. I got over the fear of giving myself a shot every other day before I got over my FRUSTRATION with the insurance. They approved it…. after my doctor sent them a paper about why I need it. Then they only approved it for two years and I will have to have it re-approved. Unless a cure is found, I’ve got this for the long haul.

The MAJOR FRUSTRATION- I can’t drive. I can make it about 2 miles from home until my peripheral vision drives me crazy, it gets too hard to focus on the road, and I get a headache and have to pull over. It’s been over a month. My doctor looked at me funny when I told him I still can’t drive, but “it’ll get better.” When??????? I try every few days as I drive my dad and daughter to school/daycare.

I will be 30 in June. I drove my dad to GP every morning at 7AM when I was 15 years old. At 16 I got Casper , my White Pontiac Sunfire, 4 cylinder but double overhead CAMS, and drove myself to school. At 17 Casper and I had bonded and I drove myself and my brother to school. I loved to drive.

My second stint in high school in north Knoxville helped squelch my driving prowess. 45 minutes to an hour on the interstate. By the time I got a job closer to home, I almost shared my grandfather’s speed preference. Almost.

And now… months shy of 30….one of my parents drops me off and picks me up.

The other REALLY BIG FRUSTRATION has been the fatigue. When the nurse visited to teach me how to give myself the shots, I told her about the fatigue and she suggested some medicines I should ask my doctor about. My dad picked up the samples yesterday. I took the first one this morning at 6:30……

It is currently 1:54 AM on Saturday and I haven’t been able to sleep. I feel like I’ve drunk a dozen 12 packs of Coke with a few cups of coffee thrown in for good measure. I’ve been so jittery all day. Like the Energizer Bunny, but worse. I’m almost embarrassed to go back to work on Monday.

I’ve been going to bed and getting up when I get tired of tossing and turning. The last time I hit the bed, I thought about all the people in this world who would love to have a bed to toss and turn in. Which led me to think about all the other ways I am blessed. And all the things I take for granted.

Since I got my diagnosis, I’ve also thought about the irony of this hitting me during Lent. I planned to observe Lent by abstaining from Coke and chocolate. I was doing well with the chocolate and weaning myself off Coke to avoid the caffeine withdrawal. (Needless to say, I’m still drinking half the Coke I was before and low fat chocolate.)

This thought has hit me more than once- Jesus endured the cross for me, so He will get me through this, and I need to tell others what He is doing for me and in me. I have my frustrations and moments when I seriously have to clench my fists to squelch the urge to throw something. But I take a few…. or a lot ….. of deep breaths and look at all the things I DO HAVE.

Blessings

1 Chronicles 4:10 And Jabez called on the God of Israel saying, "Oh, that You would bless me indeed, and enlarge my territory, that Your hand would be with me, and that You would keep me from evil , that I may not cause pain!" So God granted him what he requested.

I worked 3 days last week. That's a blessing. When people asked me how I'm doing, I usually said "Better than I was doing last week." I'm trying to look at the positives. I'm really good at looking at negatives and complaining. Scrapping the negativity and complaints is one of my goals.

I went to the doctor Thursday. He said I will be able to live a normal life once I get on my medicine. The caveat is my medication comes in shot form. And I, girl who doesn't get along well with needles, has to give herself the shot every other day. On the positive side, I have been a big girl with my allergies with a shot in each arm twice a week.

But my mistake came in researching the Betaseron. I found a good site for MSers and it has a message board. So last night, after a day at school and the fatigue kicking in, I decided to read the message board section on medicine. It's taken me awhile today to get over the state of mild panic reading all those posts put me in. I now know all about all the side effects I can suffer from.

As I write this, I am remembering something I told my mom on the way home from the visit with Dr. J before my MRI. I have thought about this before, but it is really important to remember now. My family, immediate and extended has been very blessed. While I was in the hospital, I kept thinking about all those people who don't have family to stay with them and care for them while they are sick.

One of the big ways I've been blessed in all of this is my family. My parents have three children these days- my brother and I and my daughter. At my low point in the hospital, my mother had to feed me because I could barely see the food to feed myself. Since they're cut from the same cloth, my brother entertains Trixie. I'm not quite up to driving yet, so my father takes Isabella and me to and from daycare. I even spent two mornings of convalesce with my 80 year old grandfather at his house. I could go on, but it's kinda embarrassing. I could not go through this without my family. I am so blessed that God saw fit to send my stork to them.

What is MS? I'm not talking abt a Master's of Science Degree

I really liked this video, but I don't really care for Marlo Donato Parmelee's other videos and book. They kinda border on the negative stuff I'm trying to avoid, but this video is pretty good. I like how she explains MS.

What is MS? I'm not talking abt a Master

My Prayer Life

It is very unlike me to comment publicly on my spiritual life, especially in detail. I have been a born again Christian since I was 12 years old. I don't stay quiet on my spiritual life out of shame or anything like that. I don't want to run my big mouth because my behavior isn't always becoming of a Christian. But it's time to watch and improve the behavior and talk openly about my beliefs.

Not long ago I read some of my old journals. One time period that stood out was 2001. I was reading The Prayer of Jabez. The other big thing that happened during the summer is the inception of my bilingual life. Those early days were so basic- I began using the Spanish that I was paying UT to teach me. I used Spanish to communicate with a Mexican-American brother and sister who did not speak any English. I started with the easy stuff- Me gusta leer. Me gusta el pollo. Te gusta pizza? Slowly but surely my Spanish improved with practice. I decided to major in Spanish. I developed what I believe is an unusual gift for a gringa. I believe that my ability to speak Spanish is an answer to my Prayer of Jabez.

I give all of this background information because it's time for me to starting praying Jabez's prayer again. Bruce Wilkinson published his book in April 2000 and it was the hot Christian book at the time. It's passed its heyday, but I plan to revisit the short book to supplement the quick, powerful prayer that I comes quickly to mind.

(Since it isn't politically correct, I'm gonna whisper. The other prayer initiative I've undertaken is praying for my students.)

A New Blog for a New Age

I had not planned to get back into blogging anytime soon, but as I posted yesterday, plans change. I don't want to keep posting on the same old blog because a lot of things have changed for me since I started that one. But I wanted to get this started and close off the old one. BTW I really wanted to go with just kesi.blogspot, but it was already taken! Apparently there is another Kesi in Maryland and she posted one time and is taking up my spot with blogger. I'll get over it.