Not always sure who I am

Getting Ready for Christmas

My kids and I have several Christmas traditions from their childhood. We have some very old decorations on the tree that we got for our very first Christmas as a family of three. They are so important to both Kristi and I. I've always let my kids choose ornaments and decorate the house any way they see fit. We have Christmas lights bordering our entire living room ceiling! I actually love it! It creates a warm and cozy ambience. The pole that was installed to assist me in walking up the stairs has red & white garland so it looks like a big candy cane! We have all the presents wrapped and under the tree, except that I am going shopping in a couple days for Kristi's gift, and she's going shopping for mine soon. We've also painted some ceramic ornaments together this year. It was so much fun and renewed my interest in crafts and creativity!
Now, I've talked before about my relapse that has lasted more than 10 months so far. I've learned to live with new normals and adapt things to my limited abilities. I'm determined to get back to my old normals as much as possible. I often do household chores, but there are some things I just can't do yet. One of the things I have had to do was I had to sit on the seat of my walker when I brushed my teeth since last February. Last night I went into the bathroom just to put something away in the cabinet and decided to brush my teeth right then rather than later. I was just standing there brushing my teeth when I caught a glimpse of myself in the mirror. It hit me...I was standing up the entire time I brushed my teeth! I did it!!! Without sitting down!! I didn't even think about it! By the time I was almost done I was pretty wobbly and was hanging on to the counter, but I did it! It might seem small and silly to some of you, but it was a huge deal to me! It's one more small step toward my old normals! I can't wait to tell my therapist! She'll be so happy to see another step toward independence!!
I'm off to do more stretches and think of more ways I'd like to develop my creative side!

Jumbled Thoughts...

Well, I was determined to write every day or at least every other day! That already didn't happen! I'm great at procrastinating! I keep thinking I'll do it later...so later is finally here!
I have tried to write a few other posts but got so emotional that I just couldn't share them!
Our family has lost 3 loved ones since August. Two were cousins that left us far too soon. The first was a younger cousin, who fought his cancer valiantly, but God had a plan we will never understand. He was a loving son to my auntie and uncle, and a loving daddy and husband. I am close to his sister and I know she misses him terribly. I hurt for her!
The latest was my cousin Wes, who I had always wished was my big brother! He was so sweet and always played with me and took me under his wing at family gatherings! I always looked up to him! I wished I could draw like he did when we were children. I am a talented writer, but, unlike Wes, I've always been too shy to share it.
This past summer I was in the hospital. Wes came to visit me often, even though he was in so much pain. I could see him struggling to sit in the chair next to my bed, but he faithfully came and cheered me up. We talked about the years we missed in between our childhood and our reunion. I showed him things I'd written. He wanted me to tell some stories, and promised to help me and possibly even co-write one particular story. He was so brave, so strong, so encouraging! He very quickly worked his way back up to being my idol. Anytime I texted him complaining of pain or frustration he would encourage me and promise to be back to visit soon. He could make me laugh within a minute of arriving in my room! Now when I see anything pertaining to his favourite superheroes or Star Wars, I have to fight tears. Those were the things that he loved so much.
I am fighting for my health and independence now. I'm struggling with the loss of two cousins and concern for their parents, my dear aunts and uncles. My mom supports and encourages me daily.
I wanted to write a tribute to Wes but I can't. I just get too emotional. But every time I work on a story, or attempt to write a blog, that is a tribute to him. And I will get the story done that he wants me to tell. And I know that he will be watching and he'll be proud of me.

It's a Good Day!!!

I didn't write yesterday because I was not having the best day and was trying to do some cleaning. I wasn't very successful, but last night, I vacuumed my front entrance and living room. That's not an easy feat with a canister style Electrolux and a wheelchair. But I did it! I'm so proud of myself. My therapists tell me not to do it due to my MS fatigue, but being forced into retirement at 42 means I can get awfully bored! People who know me would know that I'm really, really bored when I get excited about vacuuming!
Today I got up and loaded the dishwasher and made my breakfast! It's an amazing feeling to be able to do some of the things a regular person does! It's been about a year, maybe more, that I couldn't do all of this in one day! And before I went to the hospital, making my own breakfast and loading the dishwasher would have been all I did in a day! I would need a nap and just rest the remainder of the day. Of course, before my relapse I didn't have a wheelchair. I do all my housework in my chair now, so I only do things I can reach in my chair.
I had therapy this afternoon.My friend drove me and had to drop me off early. I decided to kill time by going to the ward and visiting my rehab nurses. It feels so good when they come and give me big hugs! A couple of them rushed over and hugged me and said they were so sorry to hear about the loss of Wes! That's sweet in itself, but the fact that they remembered that he and I are cousins and his visits! It meant a lot to me! I will write more about him another day, because I know that I need to share about how he helped and encouraged me! Then it was time to go to my "torture session" as I affectionately refer to therapy! I told my therapist that my surgery (two weeks ago) had really worn me down and I didn't feel like I could accomplish much. She agreed to just do what I feel up to. I walked 120 meters, with two small breaks. I then did a few leg stretches and that's about it. She said she was really proud of me because she was watching my face and could see the effort it took and I was fighting and working very hard but didn't quit. It made me feel very good that she could tell that I did my best because I certainly have done more work than that in therapy. I'll get back up to my old levels again!
And now the big news!!!!! I got my motor scooter today!!!! I've decided that it's my Harley! I'm a big, bad scooter mama!!!! Tomorrow I'll go out for a ride and see how it feels to go out all on my own for the first time since January 29!!!

Here we go!

I'm going to start with a bit of a background on my current situation. Future posts will likely shed light on more details of some of the events of this year. But 2015 was off to a rough start. On January 29 I went blind in my right eye. It lasted for 32 days. It was the scariest thing I can recall ever happening to me. It is a very normal MS symptom, and most people actually find that it's the first symptom they ever have. I, however, am unique, and I didn't experience it for the first six years of my war with MS. Shortly after I went blind, my ability to walk steadily decreased until I was bedridden. I lost the function of several parts of my body at the same time. On March 21 I started having home care nurses come in to help me twice a day. In the beginning of May they started telling me that I needed to go to the hospital. Knowing that doctors have a responsibility to ensure your safety, I knew that if I went in, they wouldn't allow me to get a day pass for Kristi's grad. Besides, a hospital bracelet wouldn't match the outfit I planned to wear. I fought the nurses every day because nothing was keeping me from my baby girl's grad! The night of her grad, my niece Nikki drove my mom and I to the grad. They had to help me down the stairs. We used my wheelchair at the venue. It was so hard to swallow my pride and be seen on the most important night of her life in a chair.  But I'll do anything for both of my kids, and I'd rather be there in a chair than not be there. I was still of the mindset that the chair somehow made me less of a person. When we got home I was so tired, Nikki and Mom had to help me get out of the car and into the chair. They wheeled me to the outside stairs. I fell. I crawled up them and sat at the front door for a few minutes. I then crawled across the living room where there are 5 more steps up to the level where my bedroom is. I began to cry. There was no way I was getting up those stairs. My night nurse came and recommended we call the fire fighters. They would carry me up to bed. Again, my pride took a huge hit. I had to be carried to bed by firefighters! On the upside a couple of them were cute! :) I again refused to go to the hospital because I did not want Kristi to come home from her grad party to find me at the hospital. I thought that was a bad memory to have! So I laid in bed. She came home Saturday morning and hugged me and ran down to bed, where she slept away most of the day. In the evening I asked her to come to my room. I told her I wanted to spend the evening with her and in the morning we'd call an ambulance to take me to the hospital. On May 17 I was admitted to the hospital, where I stayed for 88 days, until August 12. When I came home the twice a day visits resumed. Then I began outpatient therapy. Then on Oct 22 I had a minor surgery to help with one of my symptoms. Then the nurses started to come only in the morning. Now they only come 2 - 3 times a week to check on my surgical wound. Soon they will only come once every 8 weeks. 
I know I glossed over a lot and focused mostly on Kristi's grad, but that just leaves more to write next time! I am always open to talk about my disease, the treatments and any questions you have! And just so you know...I will not write solely about how the disease affects me so stay tuned for lots of interesting topics! :)