Sunday, September 22, 2013

Hard to write about

I am not sure why this blog is so hard to write.  Maybe because I haven't blogged anything personal and painful in such a long time.  Maybe I am just tired of MS.  Tired of talking about it....tired of having it.  Tired of feeling like a burden and a disappointment to my husband, family, and friends. 

This has been a very long and very painful week.  To explain why I have to start about three weeks ago.  I was awaken from my sleep one night with this burning in my hands.  I thought how weird this was....but then I remembered how for about two or three weeks before that, I had been waking up with my hands all stiff and painful and feeling like they were swollen but they weren't.....and how they had been sort of shakey.  Then all of a sudden this thought popped in my head...."Oh no, God please no....don't let this be another flare up....not my hands!"  I cried myself back to sleep that night.  Night after night my hands would burn and the only thing that would help would be to make sure they were not under any covers, just like my feet.  So after a few weeks I called my neurologist.  They scheduled an appointment with me right away and then schedule a brain and spinal MRI to check for more brain lesions.  This all happened two weeks ago.  The MRI's showed no new I thought it was all new flare-up.  Then a week ago from Friday my doctor said that where the lesions would be in my brain are very hard to see.  They can hide in the MRI's and not show up but are still there.  He wanted to run some more texts....this is how the painful week started.

On Wednesday, I had a EMG.  This is where they send electrical shocks through your arm.  They start low around your wrist and then move up to your elbow.  It hurts.  Then they stick needles into the muscles of your hands, wrist and arms and have you contract your muscles.  And that hurts.  That test showed that my nerves and muscles in my hands and arms were working great.  So that led my doctor to believe that the signals were getting messed up in my spine and that I did possible have a lesion somewhere in the brain.  So the last test he wanted to schedule was a lumbar puncture.  That was scheduled for two days ago. 

I have to admit that I did something awful on Friday.....I lied to my dad and to my husband.  I told each of them that the other was taking me to this test and went by myself.  (fyi.....I have already apologized to each of them)  I am not sure why it was so important for me to do this myself.  Maybe I just thought that I wanted to handle this by myself from now on?  Maybe I thought they really didn't want to go and just felt obligated?  I don't know.  Anyway, Friday at 9:30 I was curled up in a ball on the table getting my first shots to numb the area of my lower where they were going to stick a needle in and remove 10cc of my spinal fluid.  It is about a 20 to 25 min process.  About two minutes into it everything turned awful.  I started all at once to turn white (I only know this because the nurse kept saying it to my doctor), start shaking, start sweating, dry heaving, and crying.  This all lasted for about 20 mins straight.  About 15 mins after the test they had to draw blood.  The first nurse tried 5 times but my veins blew each time.  She kept apologizing (she was the same nurse that was in there for the spinal puncture) and felt awful.  Then a different nurse tried and blew two more veins.  So she said over and over I am so sorry but I need to draw the blood and the only place left is the inside of your wrist.  She told me she had only done this once before because it is a last resort because it is painful.  She was right!  I had to stay there for an hour and then got to come home and rest for about 45 mins, grab a bite to eat, lock myself in my bedroom and cry,  and then drive back to the hospital to start my steroid infusions.

You are supposed to have your blood drawn before your infusions to check your sugar and potassium levels but thankfully the nurse who drew the blood from my wrist drew extra and they had enough left over to run the tests!  The nurse who started my infusions was so sweet.  I thought I was done crying for the day but she asked my if I had any kids and I started bawling.   I couldn't talk for about 10 mins.  I kept thinking of my kids at home all day by themselves while I was here at the hospital.  Why were they stuck with me....they deserved so much more!  After I settled down she tried to start the IV in my hand and I just started screaming because the pain was crazy.  The vein had blown and after seeing all the bruises already on my hands and arms she decided the best place was right in the bend of my arm.  It is a very uncomfortable place.  The infusions take about 2 hours and since it is a LOT of steroids your body can react different ways.  For me, I get an awful metallic taste in my mouth the rest of the day which makes eating hard and I get sick to my stomach.  My lower back was also feeling very sore and having small contraction-like pains every 1/2 hr or so from the lumbar puncture.  I got home Friday night at about 5 and had already planned a party at my house from 6 to 7 that I didn't want to cancel at the last minute.  So I got the house ready, had the party, and then about 8 went up to bed.  By then my IV in my arm was hurting (I kept it in so I would have to be poked again on Saturday) and I literally begged Matt to pull it out.  He said no!  Then my back was contracting every few minutes and I couldn't rest at all.  I ended up taking lots of pain medicine and Benadryl to fall asleep. 

Saturday I had the girls' soccer games in the morning and back to the hospital at noon.  Matt left right after I did to go to Chicago until Monday night for work.  I am glad he is getting a break from all of this....he needs some time to himself!  : )  They had to take blood this time and went straight for the inside of my wrist again....OUCH!  Then I got hooked up and my infusions started again.  One of my twins went with me and we cuddled on the chair and watched some movies and it was sweet.  I once again had the metallic taste and upset stomach.  I had the nurse take out the IV yesterday because I couldn't stand the thought of another day with that thing in my arm! 

I have to go back today for the last infusion at noon.  I don't want to go.  I want to stay in my bed all day and hide from the needles waiting for me.  I know I sound like a baby but I have reached my limit with all of this.  I write this VERY long blog to simple ask for prayer.  Obviously I need prayer for the courage to go back today!  : )  But also for something more...for my heart.  My heart is so cold right now and I feel left by God.  I just feel hopeless.  I know in my head God never leaves us and always has a plan for us but my heart doesn't feel it at all.  I desire closeness with my Savior but feel like I am just disappointing Him as well.  Thank you to all who feel led to pray for me and my family.....


  1. :( I know how that test feels. I have Erbs Palsy in my left arm/shoulder from an injury when I was born. I went through that everyday for YEARS. Absolutely horrible, and I was just a kid. I hope the infusions help you feel better! (((hugs))) I WILL pray for you, and I will continue to read when you do post on here. I understand how hard it is for you to write about your MS, I only blog about MS sometimes because MS doesn't define our family. We don't like to constantly talk about MS or what it is/does to you. We are still a family, with or without MS, so I like to write about our general family life too. :)

    Ila @

  2. You know it's funny cuz the other day I was like "I don't want MS to be who I am....because I am me." So I was thinking about blogging about our family and just the great things that are happening with or without my symptoms, etc. : )