I am normally not one to complain about every ache and pain (unless you live with me… then you hear it…), but this is hard.  Just hard.  I am emotionally wiped out as well as physically.  I posted a month or so ago that I was having some health issues.  I thought for sure I had MS or something like it.  No, I don’t WANT MS, but I do want an answer as to why I have been feeling so bad, sick, weak.  Last week I went downhill pretty quickly.  I just knew something was very much wrong.  I was able to get seen by a neurologist on Thursday (week ago).  He performed a very thorough examination, asked a lot of questions, looked at pictures of my family (looking for something genetic I suppose).  I did the absolute best I could.  I was exhausted, but I pushed through his testing.  I was not at all prepared for what he said he suspected I have.

The doctor had left the room for a minute and came back.  I was looking at him… fully expecting him to say, “I suspect you have MS…”, instead, he said, “It looks as though you may have a form of muscular dystrophy.”  I knew nearly nothing of it.  All I pictured were those poor kids who have their arms and legs pulled up to their bodies, faces contorted with pain.  He ordered lab work, an MRI (to rule out MS) and an EMG that I will have done in a week and a half.  I went home and cried.  I then went to Google to look it up.  There is no silver lining.  None.  If I do have it, I more than likely will slowly lose my ability to walk.  Best case is that I have the most mild form of it, which gives me a normal life span and “only” a 50% chance of losing my ability to walk.  Basically my muscles would waste slowly.  

I have undergone a lot of blood tests looking for Lyme Disease, Rocky Mountain Spotted Fever, as well as pretty much any and everything that could possibly be causing this.  I have a consult in for the VA for a CAT scan, a Neuro consult, chest x-rays (why?), and all that good stuff.  I am hoping beyond hope that my civilian neurologist is incorrect in what he is leaning toward.  I hope they can find something else to explain this.

I have had to reevaluate what my plans for the future are.  I am currently in school as an English major with the idea that I would teach high school English.  I think I would be an awesome English teacher (just ignore any of my grammar/spelling mistakes..).  Now though.. I mean if I am looking at losing ability to walk or use my arms, I don’t know.  I don’t know that I can do it.  Some days I can’t hardly walk or move I am in so much pain.  I couldn’t imagine trying to get up every day and being able to give my best.  I had hoped to be able to finish up my Associates of Arts this semester, but I don’t know that it will happen.  We have decided that once I am done with my AA, I will leave school.  I can’t keep up anymore. 

The pain waxes and wanes, but the weakness only has gotten worse.  I do my best to walk as normal as possible, to not show that it feels like I have weights on my legs, but it is draining.  I look at our house we have only been in for just over a year, and I think about how it would be impossible to stay here like I had planned.  I was excited to finally put my roots down and stay in one place and make it my home.  We have stairs.  The house isn’t very friendly to someone who has tired arms and legs.  If I do have MD, even the mildest form, I will more than likely need braces on my legs at some point.  How would I get into my tiny shower?  Or the stupidly deep bath tub?  It wouldn’t matter which door I used to get into my house, I have steep stairs to climb.

I am trying very hard to see the silver linings and make jokes about everything.  I try to hide the fact that I can’t open most anything in this house, from cereal boxes, can opener is out of the question, lids on water bottles (but really, those things are hard for a lot of people!).  Even this blog post has taken a lot out of my fingers.  They are so tired.  I drop things because my hands refuse to work right.

I was supposed to go to Spain this summer to finish up my Spanish requirements for my AA.  Obviously that is out of the question now.  There’s no way.  Aside from the physical challenges, until we know more about what is going on, we need to be saving our money.  Morbid, but we have no life insurance on me.  My husband would have a hard time financially if something happened to me before the kids turned 18.  We are trying to rein in our finances to ensure things wouldn’t have to change too much for the kids. 

I know someone is sitting there thinking that I need to not think about all this.  That until I get a firm diagnosis, I shouldn’t let my mind go here.  I view it differently.  I need to do this, plan, make lists, DO stuff.  If I don’t have something that is going to kill me in 15 years then I will be relieved and move on.  If I do, then it’s just that much less I will have to do when the time comes.

I am a religious person.  I wasn’t always.  I once thought the Bible was a great made up story.  But I have seen too much, felt too much, to not believe in God and Jesus.  I am heartbroken for people who don’t share my beliefs, because I know for a fact that my life has improved since coming back to God.  I had t find the right church.  One where I didn’t feel horrible after I left, one I looked forward to going to.  It took until I was nearly 30 to find it, but I did.  It is in times like now where this has given me strength.  I do not question God, I do not question why I would feel like this.  I realize there is something beyond me.  There are plans for this.  Every one who is in my life right now was placed there for a reason.  My husband is naturally a care taker.  I have just got more close to more people in the church so I feel like I have a strong support system.  Not just me, but my husband and children.  I know that even if the worst happened, they would all be taken care of somehow.  I trust that our church would help my husband and children through whatever difficulties lay ahead.  I trust right now that God will allow what ever answers are needed, either way.  I have to trust in God.  I just don’t see any other reasoning.

Enough rambling.  I need to get ready for school.   I will update when I know more.

One thought

  1. wow. thank you for being so open to share so much. I hope you get some concrete answers soon, whatever they may be. And I think you have every reason to do some planning and preparing just in case.

    Like

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