I HATE

  There are two letters when written beside each other that I detest. Rarely do I give into emotions and just say it..but ..I. HATE. MS. I hate those two letters that combine to make my husband feel so wore out that he actually cannot sleep. Those two letters that sum up a mass disease...MS has something like 50,000 symptoms!!...and makes people quickly dismiss it.
  I hate how Steve battles it so hard and when he gets to where he is feeling great..it rears it's ugly head and says "HAHAHAHA YOU just thought you was feeling better". I hate how the disease can make his legs hurt endlessly then toss vertigo on top of it. I hate how it is a battle of wills within Steve. He can sit on the porch and ache or he can sit in the house and ache or he can lay in the bed and ache. On a good day it's still there....lingering in the shadow, taunting, causing the person that is fighting it and their family to wait for the other shoe to drop. I hate how it makes me feel as if I don't have the support system I should out of some people, I hate how it makes me wish for one day those folks would battle this in Steve's shoes or mine..and I hate how it caused me to be bitter till I realized...it's their loss not ours. We have who we know is behind us 100% and will always be there for us...fair weather isn't our thing.
  It forces wives to have worry in the back of their head that today it's going to start a relapse. That today may be the day it affects some serious part of the body. Today is the day it will decide to show us who is boss. It forces us to be doubly careful during flu/cold season because what Kaya and I can get and be over in a few days...Steve will battle for weeks. Which alters MS shots, which starts issues again if let go too long.
  It forces Steve to feel like inside he can't win some days. If he pushes himself hard to do things with us....tomorrow will be rough. If he doesn't go with us and rests...then he feels as if he misses out. It makes me feel if I say "Hey go with us." that I pressure Steve to do things or make him feel as if he has to...but if I don't ask it makes me worry I'll make him feel as if he can't keep up or is left out.
  I hate how it makes him cranky even though he tries to hide it. How it makes his eyes have that "I'm so tired of being tired look". How it makes a strong man just want to curl up under a blanket and rest.
  I hate how every person battling MS feels as if they are the only person battling it simply because it's a hard disease to understand. I know at times I've felt like it's us against the world because all of my friend's and coworker's husbands are healthy or have no issues. I'm thankful my friends are all nurses or medical fields and understand it 100% and have been our rock when we needed them. And I've realized that looks can be deceiving...just like with MS. Steve doesn't "look"sick...and I've found out some people I know/work with/friends with have situations that I never knew of till we started talking.
  Two years ago this month MS decided to become part of our lives. Two years ago around end of May or so we had the name Multiple Sclerosis attached to our lives forever. A good 6 mo into that first year we fought insurance companies, we fought getting into a program to even be able to afford Steve's MS shots, we fought family that just didn't understand, we fought fear daily, we fought medical bills, we fought iv drips of Steroids to prep for some serious MS meds, we fought reactions to shots that made Steve burn alive with 104degree fevers AFTER 1600 mg of ibuprofen, shakes so hard it literally wore his arms/legs out, and mood swings that would cause anyone to throw their hands up.
  But you know what...after getting this rant out I realize...we fought it and we won. Nope, MS isn't gone it's still alive and kicking..but so are we. Emotions can be on high but I've learned to stop wondering why those we love just don't get it and don't realize what a phone call checking on Steve would mean to us or just being there for us means. I've learned to stop questioning why things go the way they do. I've let my anger go and I try hard to let my fear go. I hold tighter those that are there for us, my Mom/Dad/brother that are our rocks, those that do understand and my awesome coworkers.
   We are in this for the long haul and I have no desire to lose my husband or give in to MS. I'm tired of hearing people say "You're so strong." For what? For being there for my husband that I took the vow to love and cherish, sickness and health? For standing in the shower letting my tears out so Kaya is no wiser that I worry? For doing what I know Steve would do for me? Nope, I'm not strong...I'm a team player and I love my husband to the end of the world. Then I get aggravated at myself for getting tired of people saying "you're so strong" because I know they only truly care and may not always know what to say.
   I hate that MS makes people uncomfortable at times and the less they know about the disease the less they seem to say or ask. I believe education is the key in any situation.
   He's Kaya's superhero in a cape, the "Daddy has a disease but it's sure not contagious" theory. The man who hung the moon for her and she has to have a kiss from every night or she gets upset.
   So maybe the world needs to look at MS through a child's eyes. It is what is. But it's not the person as a whole.
  Ok...so I feel better after this mini rant. :) As I've always told Steve "Babe, we've got this" :)