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Tuesday, March 8, 2011

MS ... Trial and triumph, part 4

(continued from: part 1, part 2, part 3)

disclaimer: no pictures this post - hope you'll read anyway :)

I need to say that this whole experience was MUCH harder on my family than it was on me. I think it's always worse for loved ones standing helplessly by.

Our doctor, John Roberts, MD ... A gifted physician, an amazing, kind individual, didn't hurry his visit with us. He sat in our hospital room, armed with brochures and prepared to take all the time needed to answer our multitude of questions. "MS is a potentially debilitating disease with no cure. However, there are steps we can take to slow the progression and to lighten the severity of relapses. We will start you on Avonex, an interferon, which you will inject weekly. Starting now with this medication will help slow the progression of MS in your body." But we wanted more information - what caused this? what if we change diet, increase exercise, sleep more, work less? if we can figure out why I got it, we could surely get rid of it ... These were more Brad's thoughts than mine. I wanted to distance myself from anything about MS. It was an ugly word, an ugly disease. I didn't want to think about it, read about it, or talk about it. But that night in the hospital room, I opened up my scriptures and was reading in the Doctrine and Covenants - modern day scripture, Section 89 which is about the Word of Wisdom, the Lord's law of health. Near the end of that section is a promise: "And all saints who remember to keep and do these sayings, walking in obedience to the commandments, shall receive health in their navel and marrow to their bones; And shall find wisdom and great treasures of knowledge, even hidden treasures; And shall run and not be weary, and shall walk and not faint." I had always understood this symbolically .. That is, I had always believed this meant that by following this law of health and living the best we know how that we would have the energy to do important, worthwhile things in this life. But that night in a hospital bed, as I read the words, "run and not be weary" I was struck deep in my soul with the knowledge that this was a literal promise for me, personally. I knew then that if I made it my quest to search and more clearly understand the Word of Wisdom, then implement it in my life - I would be able to run. And I would no longer be weary. It was pure inspiration, personal revelation to me. I had such a deep burning inside that testified to me this was a course of action I should pursue.

When I say that me having MS was harder on my family than on me, it is absolutely true. It haunted Brad. It hurt him to see me unable to live like I had been living. As we walked together through the hospital halls and half way down the hallway my thighs burned as if I'd been pressing hundreds of pounds of weights - and my energy was exhausted to the point of needing to sit down immediately - concern and worry etched deep lines in Brad's face. My parents were on their way west for a family reunion and took a detour to visit me in the hospital. Their tears and concern were more than mine. It was so hard for them to see their little girl in this shape. Back home the family readied for our return. I found out years later the divine wisdom of Trevor having a couple of months with us before leaving on his mission ... Brooke was 13 at the time. She was soon to be thrust into an adult role. Brooke has told me how Trevor would come home from work and find her in her room ... He would take her in his arms and hold her as she wept painful tears. Brooke never had to explain anything to Trevor ... He knew how she felt and he bore her burdens whenever he could. I cry even now when I think about the premature growing up that took place in our home. The first couple of months I spent a lot of time sleeping. My sister lived nearby and was a tremendous help to the family - but Brooke felt the responsibility to mother everyone. She did so beautifully. Dinners were made, kids readied for school, house kept clean ... All under the competent supervision of my grown up 13-year-old. The weight had to be more than I can imagine. Brooke has never talked a lot about it - but every now and then she tells me that it was the hardest time of her life. She tells me how Trevor saved her.

God's laws are eternal and apply to everyone. This I know. And there are blessings attached to each law. One such law is tithing. When we give the Lord one-tenth of our income, we are blessed. "Bring ye all the tithes into the storehouse, that there may be meat in mine house, and prove me now herewith, saith the Lord of hosts, if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it. " (Old Testament, Malachi 3:10). I've witnessed fulfillment of that blessing many times - during the beginning of our MS battle was one of those times. The hospital worked to get us set up having Avonex delivered for my weekly injections. The problem was, insurance wouldn't cover this medication and the cost was about $1200 a month. Brad made a good living that supported our family, but there was not $1200 or anything near that, as discretionary income. Through a series of little miracles, it was worked out for 3-months supply to be FedEx'd to our home regularly. This was a testimony builder for our family. I know that as we consistently pay our tithing that we are blessed both spiritually AND temporally.

Another of God's laws is His law of health. You don't have to be a Mormon or a Christian, or a believer of any kind to benefit from following God's laws. It's black and white - just like the law of gravity. You don't have to believe you won't float away - you can believe anything you want. But if you're on this earth and not in an anti-gravity room, gravity will hold you down. That's just the way it is. If we obey any of God's laws, we will receive the blessing attached. So Brad and I began an in-depth study of the Word of Wisdom. Many people know that Mormons don't smoke or drink. What is often neglected, even by members of the Church, is that there are not just "Don'ts" but also a whole lot of "Do's". Our prayerful study of this section of the Doctrine and Covenants led us to study words of our prophets and apostles. It also led us to research in other ways. I consulted with a holistic healer, Brad read up on what other people with MS were doing, etc. We know that through following our inspiration to study this that we were led to change habits and incorporate things into our daily lives that had a direct impact on my health. Here are some of the things we did:
Eat organic as much as possible
Eat as close to the whole food as possible (that is, we got a grinder and began to grind our own wheat, flake our own oats for oatmeal, buy fruit and veggies in season and as much as possible directly from a farm, etc)
Cut out animal fat
Increase consumption of wild fish, especially salmon
Avoid preservatives
Eat more "live foods" (not cooked - salads & stuff)
Additionally, we re-examined our busy schedules and prayerfully re-prioritized. I learned how to say "no". That was not easy. That may actually have been the hardest habit to change. We let go of a lot of things that we used to say we HAD to do, realizing that we had put that demand on ourselves. In short, we simplified our lives. Instead of trying to do it all, we kept strong emphasis on family time and little (sometimes no) emphasis on other things.

My weekly injections knocked me down and put for 1-2 days each week. Arbitrarily we picked Wednesday night for my injections. An hour before the shot I'd take 2 Tylenol PM and 10 mg of prednisone. We would have dinner and go through our night time routine, do my shot, then I'd crash in the bedroom where I would stay till the kids got home from school the next day. My injection would cause a high fever and give me flu-like symptoms. My skin, my joints, my whole body would hurt and I was unfunctional for a lot of hours. At first it would take two days before I could be up and moving again ... Before long, I could get up the afternoon of the first day after, then by the second day I would be pretty much back to normal. The kids, to this day, HATE Thursdays. I was conspicuously absent one day a week for those three years. This was hard on the family. But lots of wonderful things happened during this time ... My sister would make Thursdays bearable for all of us. She started a family tradition of "Brave Girl Gifts". I got a present every single Thursday for 3 years. And it wasn't like a pack of gum or something like that - I'm talking real presents! Often Camielle (my sister) would leave work and come get the kids to have them hang out at her house and watch TV and eat M&Ms. Camielle became everyone's favorite relative. She served as friend, therapist, and candyman. I watched my family's burden absorbed and lifted as Camielle stepped in. Friends would take over if anything needed attention on Thursdays. Everyone knew it was my PJ day - so people would just take over ... No phone calls or knocks on the door ... The just stepped up and served. I saw the goodness of people - love shown through acts of service.


- Posted using BlogPress from my iPad


  1. Remarkable. I often say an illness is just as hard, if not harder on the caregivers than the patient but in this case I see that they were also given wonderful gifts. To step up, to find strength in themselves, to learn that you can move through difficult times and come out the other side. Yes, gifts were given even if it didn't feel like it at the time, they always are I think.

  2. oh sweetie, i didn't know this difficult path you are walking
    so graciously. you will be in my evening prayers until you
    are completely healed.


  3. What a story !! i did now you where sick !??......pffff it is hard for you darling......i will pray for you darling....lovely

  4. What a trial! My mom has a mild form of MS, and never had the shots - they sound awful. You're such a good writer, Denalee, I'm sure a lot of people will be helped by you sharing your story.

    I'm anxiously awaiting the next part!

  5. you've written with such elegance and grace. best wishes !

  6. Well put! My husband has MS and was diagnosed 5 years ago. IT IS HARD on the family but it has made us so much stronger! Thank you for sharing your story....

  7. this made me cry! - my Mom is batteling cancer right now and i just got tested - you are an inspiration and i will pray for u and ur family always!


    *kiss kiss*
    Erika @ ~Tiptoe Butterfly~

  8. I cannot imagine what an immense struggle this was. Your family is truly amazing, your entire family is comprised of magnificent people Denalee. I bet they get that from you.

    Thank you for being so postive, i hope you know what that does for all of your readers.


    And thank you so much for your sweet comment today. i truly love being able to share the news with you.


    Love Jill

  9. Oh how you have touched me with this comment...I have been where you are and when I looked into the faces of my family...I felt sad...I didn't want this disease...but most of all I didn't want my family to have to go through what they did!!! I think this disease was the reason that my daughter decided to be a nurse!!

    Thank you for sharing....the scriptures and how you applied it to your life!!! You are my hero....such an inspiration to each and every one of use!!

    God Bless you sweet friend!!

  10. Wow, it sounds like you and your family have been through quite a lot. May God continue to bless your family with strength and power to keep going on.
    I know prayers work. I also know God engineers all of our circumstances and allows us to go through trials (& sickness) so we can draw close to Him. We live in a fallen world, it will not be perfect here on earth. But, we do as believers have the heavenly hope that our bodies will be new, we won't have sickness or shed tears when we get there. It will be perfect.
    While we are here we do need to try and take care of ourselves, be good stewards of our bodies...and to be good stewards of all of the blessings HE has given to us. To do all the good we can. But also to know we can never BE good enough, or DO enough good works to make it into heaven on our own. It is only by God's grace that we can do that. When we ask for forgiveness of our sins, and by acknowledging that Jesus Christ died on the cross for our sins. Accepting that free gift of salvation, and having a personal relationship with Jesus! I am so thankful to God he made a way of escape for us from sin. And that he loves each of us SO much that he sent his only Son to be the ultimate sacrifice for sin!!

    Thank you for opening your heart and sharing your story...:) I pray God will continue to encourage you in a mighty way!

    xoxo Gloria

  11. Good gravy, I had no idea you went through this! I admire how you did so much to change what you could, and let other people help you. You have seen miracles!

  12. I'm stunned! I can't believe how much you and your family have been through. You're so strong and graceful through it all. Thank you so much for sharing this with us. xoxo

  13. and you just keep on smiling that gorgeous smile of yours! girlfriend, you have earned your cloud in heaven. you cannot begin to know how much strength you give to us here!

    if i could hug you in person i'd be there in a heartbeat, but i'll just have to send one. sooooo

    BIG HUG~~~~

  14. I missed the beginning of the story so now I will back peddle. Your family and your faith is just amazing. Your blog always makes me realize what is truly important in life. Thanks for sharing so openly and honestly. MS is a tough disease, it sounds like you are handling it with much grace. xo

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  16. I love you, Denalee-lee! ~Camielle

  17. name is Kim and I am a friend of your cousin John here in california...
    his wife referred your blog to me since I have been diagnosed with MS - 2 years ago this past January. Reading what you have written so far has caused me to relive many of the weird, strange, scary and even some funny things that have happened to me and to my family as a result of this diagnosis. I am also a Mormon and would love to talk or email with you more sometime...but only if you feel up to it.

    so happy you are doing well...are you still on Avonex? I look forward to the rest of your sweet story....

    be well!!

  18. Geez Louise! Now I'm crying. What a great post. Brilliant. Bob and I have seen the goodness of the Lord through tithing and walking in His ways. You are right. You don't have to have faith to find out there is a way we were intended to live. You just have to live it to know it's true.

    As for your sister, now I feel bad for being so mean to my sister. Ok, I don't really but your sister does put me to shame.