Monday, October 26, 2015

Better than bald or blind. :) hOpE


October-right before steroid injections. 


Just got steroid injections and I am either balding because I was so severely malnourished being on the MS med my neuro refused to take me off of. ...or I have alopecia, a new autoimmune disease. I've gone to several doctors and they're all stumped by the severe pain and swelling, but most likely it is just a new MS thing I'll deal with forever. My vision has changed (I was always 20/20 even though I consistently have shadows in my eyes) permanently, but all in all there is a good chance I won't be completely blind or bald like I thought I would. 

(It's still a possibility, but less of a possibility). 

I have been on my new medication for about a month. Ironically, it is for people who have the flu and I felt like I've had the flu every day for almost 18 years. It doesn't help much with my flu symptoms and I have some side effects, so I still can't handle my full dose. BUT, it is helping me with my extreme fatigue. :) it isn't a cure and I still have all kinds of issues. But I am able to do a little more of what I've had to avoid. To be able to cook and clean some is phenomenal. To dance EVERY day with my daughter is a dream. I've even been able to make our Halloween costumes (no sewing) and crocheted some blankets. In my single days (before my MS was really bad too), I was able to do a blanket in a few days. Last month I couldn't finish one blanket. But this month I was able to finish my Sept baby blanket and a whole other one. :) 
I'm not feeling great yet, but I'm good. And that is way better than bad!! 

Cutting out sugar for 12 weeks really jump started things as I have tried to control my body instead of letting it control me. Some people can do sweets in moderation. I'm not one of those people. Maybe it is because of my insulin resistance and PCOS. Maybe it is because of my Hoshimoto's Thyroiditis. Or maybe it is because of my IBS, food intolerances or genetics. Who knows. Either way, cutting it out for that long and attending a few addiction classes for my sugar addiction really empowered me. 

The combination of my new med and less sugar has made it possible for me to get closer to the Word of Wisdom. I've lost a bit of weight, gained some energy and have much more hope than I've ever had for my health (in almost 18 years). Hopefully getting up to a full dose on the "flu" med that restores neurotransmitters and getting even closer to the Word of Wisdom will rejuvenate my body, mind and whole soul.  





7 comments:

  1. Kali, this is so hopeful! I know there is still experimentation and patience involved in trying new meds and practices, but I'm so happy to hear you're feeling better than you have been. Oh Kali- keep it up! I'll pray you get to continue enjoying those simple things.

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    1. Oh my gosh, yes. So true. Lots of experimentations, unexpected stumbling blocks and patience. :) I also hope I can keep enjoying the little things. I've lost a lot, so the little things have become the big things. :) I continue to pray and fast for you, amazing girl!! :)

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  2. Your story inspires me all the time. When I get so stiff and my legs feel like they weigh 50 pounds a piece, I think of you. Prayers to you and yours.

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    1. Thank you so much for telling me. :) I can def relate to you and am sorry you experience similar things. Grateful for the times when we can move, huh? Love ya!

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  3. That is so frightening! I guess there is one good thing from living there, you need that Doctor! I am so relieved things are even just marginally better. I love you!

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  4. Thanks Nan! I agree! Just the other night hubs and I were talking abt any good that has happened since moving here. I said...at least I got a good doc and am on a good health path for the first time. :) it is true that they are just marginally better, but after declining steadily for so long it is a huge deal. Love ya! Thanks for your comment. :)

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  5. Kali i'm so glad you're feeling better. I hope things continue work out for you. We love you and we're thinking about you

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