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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
Jul

multiple sclerosis :: an update

On December 31, 2008, I started having weird eye pain and by the end of the week, vision loss. I went in for testing and in January 2009, I was diagnosed with Optic Neuritis. I was told at the time there was a 40-50% chance of it turning into MS within 5-10 years.

Seven months later I was diagnosed with Multiple Sclerosis.

If you read my blog back then, you’ll recall the craziness of symptoms, treatments, and searching for a diagnosis. I recorded those posts under “eye update” and eventually “multiple sclerosis” if anyone has an hour to spare and is looking for some extra reading!

Multiple sclerosis is an autoimmune disease of the central nervous system that has no cure and is highly treatable. In MS, inflammation in the brain and spinal cord causes the loss of myelin, the insulation around nerves. Symptoms include loss of vision, numbness, tingling, excessive fatigue and weakness. They can range from mild to severe.

Through all the craziness and the eventual diagnosis, I feel like I took it all in stride. I didn’t feel sorry for myself and I never asked why. Sure it sucked. It still sucks. And I was honest about that and wrote about it. But I also trusted God had a plan for it all … I still do.

Anyway … with the recent news of Jack Osbourne’s MS diagnosis and all the “hoopla” surrounding it … I thought I’d chime in with a few thoughts.

I watched this video {kind of a long one}, and am kinda struck by the drama of it all. That may sound crass … but it’s how I feel. The family is “devastated.” He lost 60% of his vision in one eye which is “profound and terrifying.” I get it. I do. I was there. I lost part of my vision and it was scary.

I’ve been sitting here for the last 10 minutes contemplating deleting the above sentence and taking a different approach. But something tells me to keep it. It’s the truth. It’s my truth.

With the front page coverage of his diagnosis {and also some press of Ann Romney and her diagnosis}, I wanted to say there are many of us living with MS and the daily struggles it brings.

I guess the good news of the dramatic press coverage is the much needed awareness brought to the disease! I’m thankful for that.

I guess if I could talk to Jack about his recent diagnosis and the things I’ve learned over the last few years, here’s what I’d say:

Hello Jack!

Multiple Sclerosis sucks. Just does. And it always will. But it’s not the end of your life, or the world as you know it. I promise.

The injections you’ll take hurt. They’re a nuisance and annoying. There’ll be many days you just don’t feel like sticking a needle in yourself. But then you’ll remember it’s for your better good and ultimate health and so you’ll bear it. After some injections you may feel the need to tweet “we’ve got a bleeder over here!” and if you hash tag it with #multiplesclerosis, we’ll all understand. We’ve been there. And it could quite possibly be that at that very moment, as we’re holding a cotton ball on our own “bleeder” we’re checking twitter and reading what you wrote.

Your symptoms will come and go. Some days worse than others. Some more debilitating and annoying than others. But as I said, they’ll come and go.

Your limbs may go weak. They may fall asleep quickly and take too long to wake up. Your face may be numb for hours, or days. You may get stabbing pain in different parts of your body. You may feel like there are creepy-crawlers invading your skin, only to realize there’s nothing there. You’ll have brain fog, balance issues, and tremors in your hands and feet. Bowel and bladder issues … in fact, you may find yourself sitting on the pot sending a “private tweet” to a close friend saying, “I’m peeing! I’m peeing!” {or I guess you won’t really be sitting while peeing, so maybe that’s just me}.

And let’s not forget about exhaustion and fatigue. Pure-outright-you’ll-wanna-lay-in-the-middle-of-the-floor-and-nap-for-years exhaustion. You have a newborn in the house and I realize life is exhausting enough with children, let alone a disease that adds to the exhaustion. So be smart and rest when you can, get enough sleep, exercise, and be sure to eat well. These are things I’ve just started doing for myself and I can feel them making me stronger.

The worse part of this silent disease? Most no one will understand while looking at you that your body is screaming to them, “I’m hurting and I’m not okay!”

All this said … I encourage you to move forward with a positive outlook. I pray you use your celebrity to bring awareness and funding. Use your standing to let people know there is life after diagnosis, it isn’t the end of the world, and researchers are working to make advancements towards a cure every day.

Realize there are people all over this world hurting in deeper ways and with life-threatening diseases. MS? Sure, it sucks … but we’ll make it through. In fact, when adversity strikes, I like to ask myself how I can use it to possibly better those around me. What can I learn through the adversity and how can I encourage others.

This is why I’m writing … to encourage you that you’ll make it through this diagnosis and you’ll come out better on the other side!

Feel free to look me up if you’d like to have a chat over a cup of tea and scones!

As for me … last fall I found out I’d built up an immune to the injection I was taking. So I started a new medication that I inject daily. I loathe it. Truly. It’s literally like a wasp/hornet sting nine out of every ten injections. Red, puffy, stinging … the whole thing. Some days it takes everything I have to give myself those injections.

Other than that, my newest symptom, however slight, is a balance issue. It’s embarrassing at times. But it is what it is and I deal with it best I can. I have started drinking a juice that I believe is helping me a lot. My thyroid is starting to even out … I’d been on the same medication dosage for over 17 years and for the first time ever, it’s starting to lower towards normal.

Well … that’s about it on this. Thank you dear readers for your continued encouragement, kindness, and notes. You seriously have no idea how much they bless me!

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Posted in eye update, multiple sclerosis

 

13 Responses to “multiple sclerosis :: an update”

  1. CheezyK says:

    You are an inspiration …
    CheezyK recently posted..A Breath of Fresh Air

  2. Susan Lesperance says:

    Tracie, you are such an amazing young woman…touched by God, loving, brave and courageous. Despite your challenges with MS, you never complain–you accept, inform and go on with your life in a grace filled way. Thank you for sharing yourself, your knowledge and your love with us via your blog.

  3. dawn says:

    my dear beautiful friend… you shine. and you juggle and you praise and you do it all without barely a mention of your suffering, though i know it is there, and pray for your healing daily. you inspire! and maybe, just maybe, jack’s celebrity will make a difference towards research & a cure. there’s a little hope. see? you did it again :)
    dawn recently posted..five minute friday: dance

  4. Leslie says:

    Always and forever an inspiration, my sweet friend!! I love you!
    Leslie recently posted..Radio Silence

  5. Jennifer says:

    What a beautiful post and a beautiful letter. Thank you so much for sharing your story!

  6. cyndi says:

    I’m 100% in agreement with Dawn! I’ve been thinking even more than normal about you with all the press covering Jack Osbourne’s diagnosis. I didn’t exactly laugh when I heard how “devastated” Sharon & fam were but did wonder why so much drama. I guess that’s because I see how you’ve handled it from the get go. Although scared, you handled it with grace & strength. Just like you do in pretty much every situation. Those words pretty much sum you up…full of grace & strength. Add in faithfulness and it’s a pretty darn accurate description of you, my sweet & beautiful friend.

    I adore this letter to Jack & hope, quite honestly, that it somehow gets to him. Your words speak the truth & I’m certain they’d be a source of strength and inspiration to him.

    LOTS of love to you!
    cyndi recently posted..busy bee

  7. Kristyn says:

    Hello Tracie!
    I recently found you and your lovely blog via instagram. I’ve SO enjoyed your pictures and journaling through Soul Detox and now Surrendered Life! Please keep sharing!!
    This is one inspiring post!! I have no idea what Jack’s (or his family’s) spiritual position is, but I wonder if their reaction to the diagnosis reflects the lack of the same hope you have in Christ.
    I have a friend with MS who, like you, inspires gratitude and joy each and every day.
    Many Blessings,
    Kristyn

  8. Lauren L. says:

    Woahgirl. Yes and amen.

    Praying for you tonight!

  9. km says:

    I’ve learned so much about MS from you… but not only MS… You are an inspiration on how to live with a heart of grace, dignity, forgiveness and praise! thank you for your gift to the world.

  10. Melanie says:

    Always great to hear no matter your challenges, you would never trade the hand God has dealt you!
    Blessings, blessings, blessings.

  11. heather says:

    I think that while the “headlines” they pulled out are dramatic, I think watching the video is a good thing for everyone. They speak a lot about the symptoms and then a lot about how MS affects the body and how it can be treated. I think it’s scary for sure (especially given his age and new baby), but this publicity is so important for awareness to MS and learning how many people live each day with MS.

    I am so glad you are finding some things to help with your everyday and that thyroid change is awesome! Especially things like a juice that helps…juice is so much better than shots (even though of course you still have to do both). :-(
    heather recently posted..Scenes from Our 4th

  12. Hi Tracie,

    I recently found your blog through another blog and I am just beginning to poke around and get to know you. I was diagnosed with MS when I was about 31 (I am 44 now). I had ALL the stuff you describe (except vision loss). There were times after my second son was born that could barely walk. I had to have full time help for a little while when he was an infant (he is 11 now). I did IVIG treatments for a while that helped push me into remissions. I live in Houston so I had access to the best MS doctors and I saw many of them.

    To make a very long story short…we moved to Virginia and I was looking for a new doctor. I had a horrible experience with a reputable neurologist. It was abusive really. I was devastated. I was taking my son to a holistic doctor for severe stomach issues and I asked her how she became interested in holistic medicine. She shared her MS story with me…she was in a wheelchair and was told she would never walk again. She went back to school and studied nutrition, acupuncture, chiropractic and natural medicine. She completely healed me.

    She took me off dairy and wheat, soy and gluten ( and really any and all processed foods). It took a while but the protein was gone from my spinal fluid. My MRI’s were normal. Every single symptom I had disappeared. I know it sounds crazy but I have absolutely NO signs of MS whatsoever. I am not allergic to dairy or gluten but they were causing my immune system to have sever inflammation and the same processes of MS was happening.

    Maybe you already know there is some research like this out there but I felt God prompting me to share this with you. I don’t want to offend you and maybe you eat this way too…who knows. But I had to tell you what worked for me and I will pray for you. You obviously have a GREAT faith and attitude which is so important. Let me know if you want any more information. Here is a great plan…
    http://www.terrywahls.com/eating-the-wahls-way
    This video is so compelling http://www.youtube.com/watch?v=KLjgBLwH3Wc

    Blessings,
    Kim
    Kim from 3 peanuts recently posted..A knock out!

  13. Jenny says:

    Tracey,
    I am amazed that I have found you for a number of reasons; as I mentioned in an earlier post I try to do at least one RAK a day. I too have MS, I was diagnosed in January of 2002. Optic neuritis was one of many symptoms I had over a very long period of time. After having a spinal tap it was determined that I had MS and I was finally able to put a label on the many various symptoms I was experiencing. I accepted the diagnosis because the symptoms were beginning to drive me crazy. My mantra from day one has been as long as I can walk I will be OK. When people learn I have MS they can’t believe it because I do not have any external signs or symptoms of the disease. Today I am still walking but everyday I experience internal symptoms, some which are very uncomfortable. In May of 2005 my husband was diagnosed with Parkinson disease. His disease has progressed & he does have many external signs & symptoms of hyperkinetic movement disorder similar to Michael J. Fox. On July 31, 2006 our middle son Peter at the age of 22 died in his sleep of a massive heart attack. Losing our son was & still is the most devastating event in our lives.

    One of my favorite quotes is “God does not give us what we can handle, God helps us handle what we are given”. If I did not believe in God & have my strong Catholic faith as my foundation the love & support of family & friends, I don’t know how I would cope with life.

    In closing I would like to thank for publishing your blog & for all the wonderful things you are doing & sharing with others.

    Jenny

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