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.

(Tomorrow: THE REST OF THE STORY)

- Posted using BlogPress from my iPad