Here is my version of what MS is... this is an autoimmune disease where a person's body starts attacking the protective coating around the nerves in the brain and spine. It leaves little holes in the protective covering that show as plaque/lesions when imaged with an MRI. The plaques can heal over time if the body goes into remission long enough. If the illness isn't treated the plaques continue to be deposited and the nervous system continues to degrade. With treatment the meds keep the body from attacking the protective covering so the body can heal the damage.
There are 13 treatments on the market now that range from daily, every other or third day, or once a week injections, monthly IV, or twice a day pills all with horrible side effects. Potential side affects include liver and thyroid damage, depression, flu like symptoms to name a few and often a second med needs to be taken to counteract the first med's symptoms. Bottom line is the choices all pretty much suck however the likely hood of becoming symptomatic again in 6 months to a year with progressively worse symptoms and long-term damage really sucks more!! Oh and the stuff costs between $5500 - $7500 a month and takes 5-7 days to get insurance preapproval so we wait...
I made the decision to start Rebif which is an every three day injection and is known for flu like symptoms, skin damage at the injection sites, potential damage to the liver and throwing my thyroid off along with symptoms of depression. The other option I was considering is a fairly new twice a day pill which causes flushing and has a high likelyhood of causing severe depression. Joy! Sucky one or sucky two no matter because I have to make a choice and live with it until I make another choice... At least Rebif has nurses to train me how to use the injector, a sharps program so all the biohazard waste can be recycled into concrete, and a really good website with information about MS. Trying to look at the positive instead of all the negative that has had me really jammed up the last four days.
By taking a medication the disease can go into remission and the body can restore itself. Prognosis also improves with a modified paleo diet (reducing refined carbs, dairy like milk and cottage cheese, adding lots more fruits and veggies, eating fish, taking vitamin D and fish oil, B12 etc.) Clearly I also need to do better to manage my stress so will start working with my meditation and other stress reduction techniques (and if forced to... start saying no to more things.)
I will continue with acupuncture treatments once a month to help with my energy levels, massage once or twice a month to work the stress out of my body (read really deep tissue here), and chiro adjustments to keep my back and hip from barking at me.
I also need to keep moving. I have a full slate of running and triathlon races this season and I am excited to be back at it. I have to be careful because spikes in my body temperature can cause symptoms to arise pretty much immediately so I am learning to carry water with me. I will need a team of groupies with ice at my races to get me cooled down at the end but I will not let this disease take away the things that I love and triathlon is one of them.
I am working on figuring out a plan I can live with because right now it is all about me... or maybe it isn't... but anyway that is what I know today.
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