danaMSclary

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*SIGH*

I find myself doing that a lot lately.  Needing that extra bit of oxygen, I suppose!  It’s been a long, long road to where I am.  Sometimes I don’t know where “here” really is.  Or, if we’re even ever really there.  This year, particularly, has been a thorough cleansing of my heart.  I do not wish to experience this year again!  However, the struggles and crashes and pain that surfaced all needed to be addressed sooner or later.  I was preferring it would be later, Lord, but I suppose, yah…  I know, let it go, Dana.

There is something that I kind of feel like I am supposed to talk about, that I don’t want to talk about at all.  It’s not that I haven’t addressed it in small doses, but I haven’t really put it out there for the world to see.  I guess I’ve been hiding behind uncertainty and fear.

I am fairly confident that my health issues are arising from an atypical variant of primary progressive Multiple Sclerosis.  My neurologist explained it to me a long time ago in Boise, but I didn’t really get it.  She drew several different slopes and diagrams, but mine was a little different than the different one.  She said only time would tell for sure.   She could continue rescheduling spinal taps until we found a positive (in one patient in took nine tries), but I didn’t want to wait for time or fork out $10k per stab in my spine,, so I tried to run from it.  I made a couple of babies, tried to own a flower shop, and coped by not coping, I guess.

Over the course of my health career the lesions have increased with my MRI scans of the brain –  the first two indicate the yuck is in the right hemisphere, the third had no change, and the one I had in August shows them in both hemispheres.  The problem with my case, is that these lesions are not accompanied by multiple attacks, but a vey slow progression of small symptoms.  Small symptoms are developing into bigger ones.

My family doctor is hopeful that the Mayo Clinic can help us discern 1.  Is this really MS and 2.  Is there anything we can do about it?  He thinks doctors in Boise may have only seen one patient like me eight years ago, while the Mayo Clinic could have seen eight patients like me last month.  While I want to pursue it, I’m also hesitating.  What do I do if I go there, they confirm what we know, and still aren’t able to help.  What then?

My Grandma Franka, on my dad’s side, had severe Multiple Sclerosis.  One day she was helping my Papa Roy get cattle in and he yelled for her to get off her horse and close the gate.  She couldn’t move her legs.  She was thirty-six.  I will be thirty-four in January.  She had suffered a long time before this happened and nobody helped her, must less believed her.

Above and beyond paralysis, I stress about the tremor and the pain…  The tremor is severe enough in my right hand/arm that it is very obvious when I’m doing anything in manual transmission (where my brain has to think about it).  The pain is not always bad, but it’s everyday.  Every day.  The closest I can describe it is ranging from moderate electrical shocks, to a toothache sensation deep in my legs.  The toothache that you cannot ignore.  Every single day.

There is a lady at my church with cancer and back problems and you name it and she never even winces.  Then…..  you’ve got me.  I don’t know why I feel like I need to share this with the world.  I really don’t love getting everybody’s advice on how to get better…  I have tried a lot.  It’s been 14 years since my first surgery, sort of when things began.  I have tried a lot.  I get suggestions a lot. A lot.  Ha.

??????????????????????????????????????????     For the first five or so years of being “sick” I made sure everyone knew that was who I was.  I don’t think I wanted to be sick, but thought that’s what sick people could do, and I suppose I used it as an excuse for why I sucked at life.  So silly.  So, I fought through that identity , literally.  It was a fight to get doctors to help me.  A true battle.  And when it was all said and done and we got to the neurologist and she said that we’re doing everything we can do for now —which is nothing but treat symptoms…  I totally gave up on hope that I would feel well again.

Having hope in God that He will lead me to the right place to get help is really tough for me.  I know how much I could be if I felt well and if only, I could…  I can’t help wonder if that is the very reason why the Lord has hindered me.  I could be something great for me, but with this affliction, I am only great because He gives me strength.  And, that’s what I need you all to see through all of this.  Christ gives us strength where we have none.

Please pray for me as I unravel this illness and fully trust in the Lord to guide me right where He wants and needs me.  I am concerned about waking up unable to walk again.  Small things cross my mind – how will we get a wheel chair in the house?  How would I drive?  Will my arms still make flowers for the world in five years?  It is time that I faced this with the super smarties in Minnesota and I desire your prayers.  Please pray for my heart to be conditioned to receive whatever alternative diagnosis, treatment, and therapy will help me through this.  Please pray for me to gain wisdom on what types of affairs I should have in order and what types of things I don’t even need to think one second on.  Please pray for my soul to be peaceful and knowing as we go forward.

You may remember that I recently posted the scripture about the woman who had suffered bleeding for twelve years and finally, by touching the garment of Christ, she was healed.  It is the only scripture that Jesus uses the word “daughter.”  Daughter had been my one word that I picked during a Bible study.  The following Sunday, my pastor does a sermon on this.  The next week, the youth group speaker discusses this piece of scripture.

I missed the Bible study on Monday night, but my sister brought me the DVD.  Of course, the lesson taught is the same woman with a dire affliction, for twelve years, who is healed and called “Daughter” by the Almighty.  In the same DVD, the author, Sheila Walsh, brings up her friend with MS. My husband just went on a trip with his acquaintance from work, only to discover his wife has MS.  My Elise, my Meghan.  And, finally, our new friend and pastor, Hunter…  the very testimony that he shared that sealed his vote in my husband’s mind  – his mother had a very daunting, difficult battle, also, with MS.

When I heard Hunter’s testimony, and knew how drawn Toby was to him, I knew he was here for Toby.  Sorry, rest of you Weiserite Naz, these boys are supposed to be close.  It makes me thankful and sad all at once.  If what I experience is anything close to my Grandma Franka, it will not be pretty.  My papa Roy visited her every Sunday after church in the care center.  EVERY SUNDAY.   No matter what, he was good and faithful.  I suppose that’s how the Lord is, too, because Papa Roy loved the Lord.  I know Toby will be just as faithful and loving to me and I’m so thankful.

When I think about this stuff, or really talk about it realistically, I feel like I am going to suffocate.  Thank you all for letting me spill it, just like it is…  I’m done talking about it for now, but I’ll keep you updated on if I am accepted into the clinic.  Pray.

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3 responses »

  1. Sweet girl, you are so very special and your words are very thoughtful in your struggle with MS. Lord, please heal your special daughter Dana and for peace and strength until that day comes. I ask this in Jesus name, Amen.

  2. After reading your letter I sat down and wrote down my daily feelings. I never done that nor have I shared them all with anyone. Jon knows but no one else. I can understand where you are coming from. I have been given so much advise on what I should be doing from well meaning loving people that anymore I just smile and say thank you because they have no clue. I don’t have a clue most of the time so how would they.

    MS is not the same for each person, what happens to you might not happen to me and vice versa. The one thing I have come to understand is that I can’t let it take over my life. I have to stay in control which I might be about 60% of the time. Didn’t say that I had won the control battle I just know that I have to keep on top of it.

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