Wednesday, August 2, 2017

Progress report...

This is an update I shared in a group I'm a part of for the Coimbra Protocol. I thought I should share it here too:

As I was doing my exercises today, I was reflecting on this time last year. It was pretty exciting, so I had to share. I know some of you have already heard my story, so feel free to pass this post up! ;) 

I was diagnosed in the hospital, the end of last July. My original neurologist seemed hesitant to diagnosis me, as I also had positive Lyme tests and higher anticardiolipins. He wanted me to see several specialists, and he wanted me to get a second opinion at a reputable neurological facility he was referring me to. He was a very sweet and considerate neuro who didn't want to just drug me up unnecessarily. For that I am grateful!!

Anyways, before I could get in to all the specialists, my health declined and I wound up at the hospital with all my labs tests and MRIs. They called in Infectious Disease (who ruled out Lyme of course lol) and the Neuro met with me. She looked at my MRIs and the extensive lab work my PCP and Neuro had run, and diagnosed me with MS. I did steroids for three days and started baclofen for the right side of body spasms. 

Last year, after I was released from the hospital, my family and I spent some time at my parent's house. Today, as I did my marching and stair stepping, I was remembering slowly walking around my parent's house, with my husband at my side. I wasn't doing much of anything helpful. I spent most of my time in bed or sitting on a chair. My movements were pretty slow and I was easily overwhelmed. I remember laying in bed crying, as my daughter cried in the next room, while my husband tried to put her down for a nap. I felt so helpless. 

I also remember asking my husband how he was doing. I went to say, "Let me know if there is anything I can do for you." I stopped mid sentence and busted up laughing. Here I am, laying in bed, being so careful with my movements to avoid spasms. I wasn't doing much of anything for anyone!! But I was gonna offer my assistance with his new found life stressors. It's the thought that counts, right?! ;) Thankfully, he was doing well and didn't need me to do anything for him. :) 

Today I woke up around 9 - my husband wakes up and gives the kids breakfast and such. I did some school with my children. (We homeschool, which was another concern I had last year - what was gonna happen with that? Well, thankfully, my kids are still homeschooling, on track, and doing great! I've even taught my son how to read this year!) I took care of lunch. I took care of my family and the things that come up when managing a number of kids. I did 30 minutes of marching/stair stepping - that was quite a work out! I made what my son called a "big dinner" haha - Chicken Enchilada Casserole. Don't tell my Grandma - she'd be ashamed that was called a big meal. Ha ha! "You're getting back on track, mom!" The kids were excited for me. I bathed my daughter and now I'm putting her to bed. My husband was able to help my son with a project and/or work for most of the day, rather than helping me around the house or with the kids. 

I've had my ups and downs, my days of freaking out feeling like this isn't working. I've tweaked doses, brands, types of magnesiums, and various supplements. But it was crazy looking back today to where I was a year ago. I'm still not driving or doing my grocery shopping or running through Walmart with all my kids haha, but I am definitely improving!! 

Obviously with RRMS, I was gonna recover from some of that anyways. And I know prayers, PT, baclofen, and steroids helped a lot. But clearly this protocol is working!! 

I started the protocol on extremely low doses with the help of my awesome PCP last September. Then I had an MRI in December with new lesions. I then increased to correct doses in December. Michael cawley helped me wth a dose adjustment in February. And I've pretty much been at that dose since. 

I feel so grateful God led us to this protocol before starting Gilyena. I feel so grateful for the help and support of my family, amazing doctors and educators, and this group. Last year, we were excited when I made it to the dinner table. Today I made dinner and took care of my family!! What a wonderful blessing.