Thursday, June 21, 2012

Coming out of the MS closet.

  I have been reluctant to talk about my recent Multiple Sclerosis diagnosis.   It was really not  a shock to me since I have been dealing with symptoms since I was 18 however not something I was ready to admit or accept.  Both my mother and my father have MS and my mother in particular has struggled with her disease since before I was born.  So there is a strong hereditary component.

  I was partially diagnosed when I was 18. I had numbness over 3/4 of my body, fatigue, and a bit of speech issues. The neurologist did a spinal tap, MRIs, and various other tests and said that I do have lesions on my brain and spine as well as positive results from the blood and spinal tap.   The reason she did not give me a diagnosis then was that it was not yet multiple so not a multiple sclerosis diagnosis.

  Life went on and I had four babies. If I had MS then my reasoning was there was nothing to be done about it so I would just move on as if it was a fluke.   MS tends to go into remission while pregnant and nursing. I had signs and symptoms here and there but I trudged on.   I had babies and nursed for about a decade so I forgot about the MS with minor complications.  Until over the last year.

  Over the last year I have had countless tests on my heart, tests to check for pulmonary embolism, a pleurisy diagnosis was given, blood tests showing  low levels of some nutrients (of which vitamin d deficiency is linked to MS) , and I was having anxiety attacks constantly.  My body was exhausted. I was working on my psyche to address issues there and still feeling sick and tired of being sick and tired. Hopeful though that some answer was just around the corner.

   In December I felt crazy and like a total paranoid hypochondriac with weird erratic symptoms. Its been hard to track cause and effect and find patterns. The fatigue that can be debilitating  had been going on for close to a year already.  I just wanted answers.  I needed help and was so tired.  I asked my doctor to refer me to a neurologist. It was time to consider MS.  I had an MRI done, which is hell for me, but I sucked it up and layed still for an hour listening to 80's music which was actually a surreal comfort.

  What was revealed were lesions on my brain.    With that test and my symptoms it was pointing to MS again.  The problem is that no one really knows what causes MS so a diagnosis is grand in that there is comfort in knowing what you are facing and yet really its an acronym full of mountains of questions yet unanswered.

  The upside to all of this is that I have grown and continue to learn.  I have learned to manage my symptoms more effectively in turn learning acceptance and self control.  I know without a doubt that anxiety is a powerful monster not to be toyed with.  It causes a whole host of its own problems and issues of the mind that must be addressed with gentleness and firmness.

   When I have really bad days I tell myself over and over that I won't feel so bad forever.  That I will be happy again.  One of the debilitating emotional and psychological symptoms of MS is depression.  I have learned to believe myself when I look on the bright side even if at the moment I don't want to believe it.  I have come to accept that when all feels doomed, taking care of someone else never fails to make me feel better.  I am thankful to have a family to take care of.   I let myself cry and talk to Jaymon instead of stuffing the stress inside and keep moving forward.  
Fear is my nemesis and I will battle the fear.  I will face it with grace.

  Since there is a possibly that my sons will have MS as well, I am choosing to be open about it and keep learning as much as I can through trial and error and information I come across. No more pretending like nothing is wrong.  My experience could prove to be very useful for others.  Just like with anything there are gutters and strikes, ups and downs.

  There has  been research recently showing that people who continue to get some aerobic exercise have better levels of cognitive brain power than their unfit counterparts. Other symptoms of MS are loss of cognitive sharpness, memory loss, and brain fog.  So I must keep moving.  Its tricky.  The heat saps me of all energy so I have game plans to get out in the heat or I stay in.   I have a Fitdesk now that the company sent me to try out.  I can sit and pedal while watching a show or reading on my iPad.

  I had blood tests run recently and I came up very low in Vitamin D, B12, and Ferritin all of which can cause fatigue, depression, and a host of other problems.  So I am addressing those and working to get those numbers up.  I am also looking into adaptogens for help with fatigue and boosting my constitution.

  For now I am not taking any pharmaceuticals to treat the MS.  The side affects are as debilitating as the disease so I am choosing to wait.  I am continuing to research and learn.  It is a fascinating disease that there is huge amounts of material for me to read.     I do believe that science and research into MS  is moving at a fast clip so maybe in another 5 years there will be something that I would find reasonable to take.

Making some hormone vitamin D.

  I am trying to keep moving, get some sun and supplements, eat nutritiously and in a way that reduces inflammation, and take each and every precious day one at a time.  I have tasted the moments of being happy despite feeling like throwing a huge damned pity party.  I also go barefoot as much as possible.  I think it stimulates my brain through the proprioception and if I can feel what I am doing then my balance is better.

  It could be much worse.  I have a loving partner of whom I trust for comfort and advice and the proverbial  kick in the ass when I need it too.  I have four sons who need me and taking care of them makes me happy.  I will tread lightly and be thoughtful.  I will also be mentioning it here on my blog more often in the hopes of inspiring or comforting others.  Its easy to paint a life full of unicorns crapping sunshine and roses on a blog where I control the content but its not.  Its real and dirty, complicated, blissful, and  messy.  It would be boring otherwise.

  Do you have experience with MS?  Want to vent or ask questions?  What is your nemesis?  What keeps you going?  If I have inspired your own blog posts about your struggles let me know so I can read as well.

Please pass this blog post along and Be well.
Angie Bee
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I provide Bradley Method childbirth education, doula, belly casting, placenta encapsulation, and post partum doula services.
I serve families in Kitsap County, Bainbridge Island, Poulsbo, Bremerton, Silverdale, Kingston, Port Townsend, Bremerton, Port Orchard, and the greater Seattle area. email me with any questions you might have