my gratitude list for today ~

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  me and the kids back in 2013 ~ Maui, Hi

Tomorrow is my follow up with my neurologist. We will be going over my latest MRI results, we'll talk about the new lesions, and what he recommends (more strongly this time, I'm guessing). I was scared the other day when I last spoke with him...Jesus, only eight days ago? I felt that maybe I should take his advice and go on one of the MS meds. Why was I still wrestling with this idea so intensely? 

I decided to listen to my intuition, and first do a little more research. I looked at all the meds offered.  I found a site that not only compared the 56 or so meds intended to help MS, but it also included written reviews of the medications by others with MS. In fact, the med my neuro suggested for me has 115 reviews. Jackpot! It's one thing to listen to what your healthy doctor has to say about a drug and its side-effects, but if I want the truth, I know better than to trust a medically trained expert. For me to believe that I'm making a good decision, I need to hear what someone like me has to say. 

There are a lot of side effects. Some of them are more benign and unnoticeable to the outside world; permanent divots at injection sites, immediate post-injection reaction (IPIR) shortness of breath, flushing, back spasms, terrible headache, chest pain, etc. Other side effects are more troubling; anxiety, PML (from the JC virus that can be fatal and only comes from using medication), atrophy around site of injection, and sepsis from certain injectable meds. Holy smoke, talk about scary. But surely these risks are worth the benefits, right? Maybe not. After reading others talk about their experiences with the meds, it seems most had to bounce around from med to med, as they 'stopped' working after one or several years. What this means is that their flares kept happening. Their lesions kept developing. It was as if their side effects were the only proof that they were actually on medication. 

I then started to look again at alternatives to the medications. I was led back to dietary and lifestyle changes, back to Wahl's Protocol diet. This is the plan I had started with initially, but then strayed from when life started getting (more) messy and hard. I also read a lot about Radical Remission, a 9-step program for recovery from aggressive and untreatable cancers (I found testimonies from others with MS who followed this protocol regardless). This plan incorporates dietary changes in addition to a wide variety of emotional/spiritual/behavioral shifts. One of the nine steps is to listen to your intuition. Yes, this feels like a better path to follow for me.*

My idea now is to glean from both programs. I asked my guy if he would help me develop recipes from the foods I can eat. I was so out of it back when I first got sick, that I didn't have energy to participate in this radical dietary shift at all. This time around, I am looking forward to helping create Thai dishes, make our own sushi, prepare Italian pasta dishes (World Foods carries the most amazing gluten free quinoa pastas from Italy...), and I might even delve into what types of 'sweets' I can come up with. This could be fun if I look at it more as a creative project rather than a life-long punishment. 

So, today I'm feeling okay. I'm ready for my appointment tomorrow. I don't feel scared anymore. I know that my body is mine, not for others to test their medications on (just yet). I am curious to see how I can turn things around from where they stand today. I personally believe that given how I was running my life before, my body had to eventually give out. I wasn't taking care of myself. I didn't know how to divide up my time and energy in order to allow for that. The stress, grief, and loneliness of having a medically challenged child is intense, it has a price. Trying to tend to his needs while continuing to love and care for our first child took a toll on my body. And that's just how life rolls, sometimes. Now though, it's time for me to be the patient. And I'm honestly looking forward to it.


My Gratitude List for today

1. My family (kids, my guy, parents, siblings, friends, kitten and daughter's cats)
2. My home and all my art/craft supplies
3. My curiosity and willingness to listen to my intuition
4. My sobriety and all that I've learned in recovery
5. My guitar, keyboard, and music in general
6. My body for doing it's best, always
7. My spiritual connection ~ I always feel loved and cared for
8. My willingness to stay honest, somedays easier than others
9. Love, love, love
10. You


*Dr. Kelly Turner shares the nine steps of radical remission that have changed thousands of patients' lives.

9 Steps of Radical Remission:
• Changing your diet
• Herbs and supplements
• Taking control of your health
• Following your intuition
• Releasing suppressed emotions
• Increasing positive emotions
• Embracing social support
• Deepening spiritual connection
• Having a strong reason for living

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