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I'm a redeemed child of God and the momma to four vivacious daughters. I'm passionate about finding hidden blessings in the trials of life, living it out in an honest and open way, while encouraging those around me to believe in better.

12
Dec

MS :: hope of a new treatment

I gave a little update, along with a pseudo letter to Jack Osbourne, back in July and wanted to give a new update today.

First off … no more injections!! Join me in happy dance followed by a moment of silence? Oh praise the Lord my friends, praise the Lord!! My body did not, I say did not enjoy the daily injections I’ve had to give myself. I’ve said it before and I’ll say it again, they were literally like being stuck by a wasp each and every morning. The needle didn’t hurt {at least not all the time}, it was the medication.

I put the needle in, release the medicine and 60-90 seconds later … OUCHIE!!!! The injection site would welt up, hard, red, and puffy. No thankful.

There were days I just couldn’t bring myself to purposely inflict the pain. Just couldn’t.

And then lately, I’ve been seeing ads for a new oral and I thought it sounded pretty promising … death and cancer weren’t a side effect!

When talking to my doctor about it, she wasn’t too hip on the drug and told me about an infusion treatment that has been having good results.

Only one catch … I’d have to have some blood work done to make sure I was a good candidate for the new meds. You see … the medication hasn’t been around too long, and had been previously pulled from the market because people were dying from it.

There’s a virus … JC virus {not sure what it stands for} … that 50% of the population carry. In a normal healthy person, one doesn’t know they have it. But if you’ve got an autoimmune disease, have the JC virus, and start taking immune modulators, the medication becomes deadly.

And so it was taken off the market.

And then.

Research showed exactly what was causing the deaths, and with some simple blood work, the JC virus could be tested for.

And so I gave them my blood. And two weeks later, a negative result!

Woot!!

I scheduled my appointment and went in for my infusion. And as much as it sucks to have an IV … there’s just something about the whole process that creeps me out … I’m so thankful I’m a good candidate for this therapy and that I don’t have to give myself a wasp sting everyday for breakfast!!!

Since hearing about the treatment and starting it last week, I’ve heard more and more good things … even some great things!

As with all MS treatments, they aren’t a cure … there’s currently no known cure … and they aren’t necessarily designed to help with symptoms. The treatments are primarily to help MS from further progressing in your body. That said, some of the treatments actually do help with symptoms, and I’ve heard amazing things about this one! I also just talked to someone who hasn’t had a relapse or evidence of further progression in five years!

Double woot, happy dancing, and praising the good Lord!!

I’m looking forward and prayerful to what this new med might do for me!

All that good news aside, I have some bad news … maybe I should’ve started with that?

At my last appointment, the doctor noted that my MS is noticeably progressing. Mostly in the area of my balance issues. In the July update I linked at the beginning of today’s post, I mentioned a slight issue in my balance. Nothing anyone else could notice, just subtle enough that I noticed.

Well … now my doctor notices. Although, she did mention that when I concentrate hard, my balance improves. Friends … she had me walk at a snail’s pace with one foot in front of the other, toe-to-heal action. At a snail’s pace. Concentrating. And then I was good to go. Criminy.

Anyway. She wants me to start physical therapy 3-4 times a week for my balance. I’ve started taking Holy Yoga classes a few months ago and asked if those could take the place of PT. She said yes, as long as I really focused on balance and did some at home as well. And well … you know … walk at a snail’s pace concentrating really hard on not losing my balance!

And so friends … that’s a long lil’ update on me.

I’ve missed writing here and hope to be back on a regularish basis connecting with y’all again!

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Posted in eye update, multiple sclerosis

 

14 Responses to “MS :: hope of a new treatment”

  1. Melanie says:

    Praying all goes well for you!

  2. Beth says:

    So so so happy for you! Just keep concentrating and balancing yoga is an awesome way to stay fit, balanced and happy! Walking at a snails pace doesn’t work for us mama’s:) But if it is good for you then maybe just maybe it is what is needed:) God Bless you! Praying for you all the time.

  3. Tia McNelly says:

    T-
    I also have an auto-immune disease and have to take all kinds of creepy drugs and take two steps forward and three steps back… I feel like a very old, sick person trapped in a very young, healthy body. Hearing about your journey is an encouragement to me as I walk out the daily pursuit of resting in my healing, claiming that it is already mine. Found and healed. That’s me. And you. Keep sharing! If you are at all interested, here’s a link to some of my junk: http://wp.me/psxeJ-9L
    -t

  4. Pam S. says:

    Tracie, I’m so glad that you tested negative and can get the infusions. If it’s what my friend is doing, it has given her so much life (day to day living) back. She has become active again, because she can. Also, I know the week before the injections can be a bit harder. May God continue to hold you through all this…

  5. [...] reading an inspiring and encouraging post from my new friend Tracie, who is conquering MS, I realized that I leave a lot of gaps in my health story. I get caught up [...]

  6. heather says:

    Glad to hear about this new medicine. How often do you need to have the infusion? Hoping it stops progression and any new symptoms. And I if balance is a problem, slow down!! I’ve been hearing I need to slow my roll quite a bit lately and am trying to take it slow (as much as I can).

  7. Terry says:

    So happy to hear no more injections!

    Yoga is great for balance….and for the soul. I do the hot yoga which is more intense but it is really about listening to your body….good luck I hope this will be a great turning point for you~

  8. Susan Lesperance says:

    Tracie, so happy you have found a new MS med. Sending prayers your way for continued strength through this journey. So proud of you…you are a real inspiration to so many.

  9. Gretchen says:

    Good for you Tracie! I hope it helps you get back to feeling better. My son is taking the daily injection and it seems to be helping. He is also doing the plasma exchanged which he feels has helped him to get back to work. He is back at work doing what he loves and seems happy while not letting MS define him.

  10. Oh, wow! Good news and…interesting news. Glad you have found a way to get rid of the ouchie injections and are able to treat your balance issues with yoga, too. Will be praying your progression slows down measurably so that your doc gives you a thumbs up at the next appointment!

  11. Rhonda Jenkins says:

    Tracie, I had no idea what you and many others with MS, endure on a daily basis!The Lord must really admire you and consider you to be a pillar of strength. I truly believe the Lord only gives us what he KNOWS we can handle. Through our struggles we learn, and our able to teach others. In the short time I have “known” you Tracie, you have showed me strength and have opened my eyes to situations that before I would have handled poorly. Even the times that I have stopped and thought about the situation at hand for only 3 seconds, it has helped.
    Thank you so much Tracie for sharing your struggles, your pain, and your joyous moments your life brings you. I know you have probably been critisized for this. THANK YOU for not listening to these comments and following your heart. I grew up with a plaque in my house that said- “Share with me my sadness, and I’ll share with you my joy”

  12. dawn says:

    i was just thinking about that iv drip and wondered how things were going!!! and now i know. oh how wonderfulnot to do the injections every day!! dancing with you for real!!! i am continuing to pray for God to reach in and heal, but in the mean time, iv sounds better since it is less often. i wish i was closer so i could tag along and entertain you while you wait!!!

    and so… between the foot/ankle pain and the smidgy loss of balanace, i hope you are donating those oh-too-cute toms! bee careful :) love you!!!

  13. Emily says:

    I’m so sorry about the bad news, but the good news seems GREAT! I hope the new medication helps so that you don’t have to go back the the injections. Ouch!

  14. [...] last word … Voxer. I’m telling ya … Voxer’s where it’s at! Given┬áthis situation, my fingers aren’t so nimble these days, so I’m not exactly what one would call a [...]

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