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


Erin said...

thank you for sharing your story. Your strenght, wisdom and insight is inspiring. Through sharing them, you are already beating the disease and changing the future, one enlightened mind at a time. Thank you (hope to meet you some day)

shel said...

love you.

Char said...

One of the women in my running squad has MS. She's found that exercise helps her enormously and she rarely misses a session. She'll be running her first marathon next weekend and is an amazing inspiration to all of us.
Keep doing what you're doing. You have a great attitude.

MCM Mama said...

You are a strong woman. Fingers crossed that it goes back into remission for you and that your healthy choices help you feel better. {{HUGS}}

Norm Deplume said...

If anyone can kick MS's ass it's you. ;) When I saw this post come up on fb, I immediately thought "well that explains all the health weirdness of the last year!"

Much love and strength to you. I <3

sea legs girl said...

It is unreal to read this, Angie! So sorry you have to deal with this. Thank you, though, for writing about it. One upside I can see is you had the beginning signs very young and have progressed very little, thus with my little knowledge of MS, I would suspect you have a very slowly progressing form. The worst form I have seen as a physician is that that comes on in middle life and affects men. How are your parents doing now? Are they still high functioning? As you said, there are many variants of MS. Boy oh boy, but that doesn't make it fun or anything. Awesome idea with lots of exercise: makes sense in every way. But did you get an explanation for your very low B12 levels??? This is something I would take up with your doctor again. This could explain a lot of your symptoms. If you are not absorbing it properly through your intestines, you can take all of the supplements you want and never raise your levels. Some people need to get an IM injection of B12 - just something I would look into a bit further if I were you!!

KovasP said...

You are so right to keep moving and keep learning. For what it's worth, a friend of mine has MS and she has been off the drugs due to serious attention to diet,mostly gluten-free. Keep up with the good attitude, it'll take you farther than anything else!

Julie said...

(((HUGS)))!! I'm so sorry you are dealing with this but I know that with your healthful lifestyle and desire to overcome, you will get back to feeling great again. You know what you are dealing with now instead of it being just a host of vague symptoms running you down. Please keep blogging and let us know how you are and what you are doing and learning through this. I think you are amazing!!

BabyWeightMyFatAss said...

I know good and bad but I'll tell you the good only. That I know if your diet and exercise is kept up that you can keep some of the symptoms at bay. I hope that works for you.

Unknown said...

Wow. I can't believe you've been dealing with all of this and we had no idea. You are one strong woman and your spirit is beautiful! You are a great model for your little ones and they are so lucky to have such an incredible mom.

Now that you're "out" please keep us up to date on how you're feeling and doing. And if you have an extremely crappy day, please unload on us. That's what readers are for! :)

Molly said...

I'm sorry to hear this diagnosis, but you have a great outlook and plan to tackle it! Sending good thoughts your way!

funderson said...

Bah! I'm so sorry. My son's father had it, but really just gave into it and died before age 40from morphine overdose. It sounds like you are very much taking a healthier tack. Your family is, and well should be, super proud of their bad-ass mama-jama.

Shellyrm ~ just a country runner said...

You embody life and living to me. Fair isn't a word that fits neatly into a life. I know that you will find a way to handle this challenge. So glad you have such a loving family to help you and keep you focused on being as healthy as possible.

lindagrace said...

Reading your blog brings joy to my soul!!!! I can't wait to get to know you! I wish I had more time to read your entire blog!

You look awesome! You have a beautiful family and my hat is off to you for homeschooling! I have always believed but didn't have the gumption to actually be the teacher and the mother! You are awesome!

B. Kramer said...

Wow, I'm sorry to read about this. you have a great attitude, and it will serve you well. I've actually known quite a few people with MS in my life. I did MS biking event a number of years ago, before I was into running, in honor of three of my friends' relatives who have it. A friend of my sister's has it, and he's a fantastic runner. Just ran Boston again this year. These people are an inspiration, and so are you. Cheers!

dave the barefoot walker said...

it distresses me greatly to hear this diagnosis, but i am pleased that you are able to take it well.
hang in there and get in as much bf running as you can!

Kathy said...

MS is such a mystery. I know how hard this is but you already know how to endure and your activity level is doing great things for you. I've seen all levels of MS over the years as a nurse - keep pushing ... not that I need to tell you that, you really know you facts.

sumo said...

I have almost the exact same symptoms but have been diagnosed with fibromyalgia. I have just started to return to running and I love it but it sucks. :) I am soooooo much slower than I used to be and can only run half the distance. I am lucky in that the fibro isn't degenerative but it still makes getting out of bed some days feel like a pipe dream. Kudos to you for kicking MS's ass... If it helps, there's someone else out there slogging along with you. ;)

Erin said...

I am so sorry to hear this, Angie. I hope that you are able to keep it at bay indefinitely. You are so awesome and your outlook is positive. Even when you aren't feeling so positive, know that you are in my thoughts.

The Green Girl said...

Angie, I am very sorry to hear this. I admire your positive attitude. I really respect how you are doing everything in your power to fight this without pharmaceuticals. ::hugs comforting hugs::

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