Wednesday, April 29, 2009

Reflections on My Year Anniversary of My First MS Episode

i found god inside myself / and i loved her / i loved her fiercely - Ntozake Shange


This is my year anniversary of my first episode (and, if we're counting, my almost half-year anniversary of my diagnosis). I have been reviewing the year and I realize,  I have emerged from a storm. When this all began, I truly doubted that I could get through this without a partner, without "my person". I have most certainly yearned, ached even, for my person who would hold me as I cried and hand me tissues during the many, many tough moments that this year has held. Yet, here I am. Still standing. Still standing! It seems miraculous, really. 

As in any storm, there has certainly been wreckage. I lost one of my dearest, closest friends this year; our ten year friendship broke down and we broke up. I was stunned by our falling out and so saddened by this loss. Even though I have many other wonderful friendships, I am so clear on the fact that she (nor anyone else) is not replaceable. So, that loss is a sadness I very much carry with me.

At the same time, the blessings I have felt this year has been through all of my friends who have stepped up and stepped forward to be there for me even as they faced their own most difficult and challenging times. I been so lucky, so truly blessed to have thoughtful, courageous, creative, kind friends. I have been given such tender gifts through their presence in my life. Then, too, there have been several new friendships that brought lightness, laughter, and play into my life. Such sweetness! I am a lucky woman. 

Moreover, as I look back, I am surprised to to have discovered such strength inside myself. I stepped up for myself and showed myself that I am one of my own best friends and allies. Fiercely devoted and protective. So, at the end of the year, these are all the things I want to hold on to. How much I have. How blessed I am. 

Friday, April 3, 2009

Turning Points

When I took the on-line quiz about self-care and chronic illness. A light bulb went off: Oh, I don't have a plan (for dealing with MS). Medication, I ultimately realized, is not a plan. I sprung into action and am enacting the following plan: 

Diet. There are many diet plans for MS (low-fat, gluten-free, anti-candida, etc.). For me, I have deliberately chosen not to believe there is any single one answer, so while I have reviewed the diets that promise a cure from MS and I have taken them into account, I reject the premise of a cure. For me, a cure is too narrow and it doesn't allow me to respond as proactively as I need  to my entire health. And, for me, any suggestion of "the answer" has its dangers. For me, a diet without beans and soy is too narrow. A diet that just emphasizes low-fat doesn't take into consideration all of the information on healthy fat. So, I have chosen the anti-inflammatory diet because it emphasizes whole foods + whole grains + healthy fats + sleep + exercise. Low fat meat and fish are encouraged. Processed foods, hydrogenated oils, and sugar are eliminated or kept to a bare minimum. Some anti-inflammatory advocates caution against night shade vegetables including tomatoes, peppers, and eggplant; the evidence against these vegetables, though, is minimal. For me, I have decided no vegetable is my enemy unless I have a pronounced reaction to it (unbelievably, I am allergic to the all-American, inexpensive, and healthy broccoli). Part of my diet plan is to work on effective substitutions. Instead of chocolate chip cookies, I will eat high cocoa chocolate. Instead of Cherry Garcia Icecream, I will try a bowl of cherries. I have also added a regular, high quality fish oil supplement. 

Exercise. Exercise is an essential component of reducing inflammation and I have chosen to bike. Training for the City to Shore Bike Ride in October is a perfect goal. For the first month, I am mainly building my base on the bike. Now that I have outlined a five-mile circuit that I can do reasonably well, but not completely (still practicing the hills), I have decided to ride this circuit until I can ride it a full week in succession without getting off my bike once. From there, I will build distance. Slowly, I hope to build to 25 miles. I just read a great article on how to ride hills and I can't wait to get out and try it. In the meantime, I realize I need to create a plan "B" for days like today that are wickedly rainy or in the summer are too hot to ride outdoors. 

Sleep. My sleep has been involuntary interrupted for months now and I am trying to get back on track. I have committed to moving my laptop out of my bedroom before I go to bed each night (otherwise, I get sidetracked and delay my bed time or I wake in the middle of the night and get on line for several hours). I often fall asleep with my light on, so my next step is to turn off the light every night. 

Flossing. Don't laugh. Flossing is tied to healthy gums - inflammation of the gums is tied to inflammation in other parts of the body, so flossing regularly is key. Of course flossing includes all aspects of dental hygiene including brushing teeth and regular dentists visits. 

Most importantly, though, is regular doses of laughter, surrounding myself with positive, supportive people, and a positive attitude. I am committed to using MS as an opportunity for growth. And, on a regular basis, doing activities that make me deliriously, deliciously happy including: listening to good music of any kind and live music in particular, riding my bike, and hunkering down with a good memoir. 

Starting the day with the question: What will be most satisfying today? is a great way to move the day in a positive direction. 

Right On Time/Ready

I got the call yesterday. My application for financial assistance for medication has been fully approved by The National Organization of Rare Disorders (NORD). Phew! and Hallelujah! In response to the news that I will be covered 100% for 12 months, I gushed on the phone with the representative: "Oh, this is such good news. This is great! Oh! Wow, this is great news!" I am truly grateful. And, not a moment to soon, too. In other words, right on time.

I am glad that I have had several months now to adjust to the idea of daily injections. The idea of the medication side effects of Copaxone have frightened me so much that I needed the time to really work towards feeling comfortable with this new phase in my life. The process of getting comfortable has been intentional and gradual. Honestly, the potential side effect feelings similar to a panic attack have completely trumped any fears I might have of needles or performing self-injections. Here are the steps I have taken:

  • Read several blogs on experiences with Copaxone and got real about the potential side effect
  • Spoke with a friend of a friend who is successfully on Copaxone and very positive 
  • Sought a second opinion for the treatment at the MS Center in the nearest, largest city
  • Spoke to a member of the Copaxone peer-to-peer education team about Copaxone
  • Took an eight-week yoga session to get more in touch with my body and my breath 
  • Had five individual sessions with my yoga teacher (whom I LOVE) to come to terms with the diagnosis and to address my fears of treatment by developing a spiritual practice. 
I had my last session with my dearly beloved yoga instructor today. We agreed that I was in a very different place then when I started working with her. Mainly, I feel that I have settled into myself and I have embraced this journey with Multiple Sclerosis as-gasp-a gift.