March is MS Awareness Month

  March is MS Awareness month. I will admit as a family (as a person) that we didn't know too much about it other than it was a rough disease with no cure. But now that it's in our life front and center we know alot about it. It's not only chronic with no cure but sometimes to the naked eye it is invisible. Which leads to judging, opinions etc from the peanut gallery. I thought how would I approach MS Awareness? I could list statistics, medicines, routines. Or I could educate from speaking about how it affects us.
  MS is a silent, invisible disease that usually appears out of nowhere. It's simply your body turning on itself and eating the protective sheaths off nerve endings. Depending on where it decides to dine during the episode ..will tell you what will happen. With Steve we never noticed the subtle signs (tiredness, leg aches, sleepless nights, headaches etc) because they are easily wrote off as something else. Then when the nerve that was hit was a speech nerve...we knew it was something serious. Once the sheath is eaten away at..the antibodies move on to another before the first one can fully heal. Antibodies are constantly looking for a food source (sounds gross I know but easiest way to describe it) and when they eat away completely at  main nerve then you have a relapse..then a remission as your body tries to heal. Sometimes it's speech, sometimes walking, bladder etc. Sometimes your body heals completely sometimes not.
   But what MS boils down to is being tired. Dealing with medical bills,insurance companies, shot companies, using a recycling company for used pens,  shots, steroids, researching the latest item that might work. It's a diagnosis but not a death sentence. It's a Daddy that still is Superman to his baby girl..he just flies a bit slower some nights. It's pacing yourself when you have never paced yourself, realizing you just have to take a nap, it's altering plans on bad days. It's being lucky to have a spouse that understands and can pick up the riegns on family life and make things work. It's being lucky to have a child that understands sometimes Daddy's legs are tired or that sometimes he needs to sit a bit. It's dealing with people's opinions on a subject they do not live with, telling you to exercise more (not realizing that you do it every day) to eat this/not eat that. It's not being lazy. It's facing head on a situation that can make or break your marriage, your self esteem and your confidence. It's having family back off because they don't understand and if they don't see it..it doesn't exist. It's friends no longer calling because they think "you can't do anything". It's trying a new medicine that makes you feel like crap in hopes it staves off a relapse..or shunning new meds to try a homeopathic way and then worry that you might miss the "one" medicine that could have worked. It's supplements and vitamins. It makes you appreciate those that stand beside you, those that care enough to check on you/ask how you are..and it's learning that some never realize it's a disease BUT IT'S NOT YOUR LIFE in every single instance. Do we know that we won't hike the Grand Canyon in four hours? Yes...but it doesn't mean we WON'T hike it (we will just do it on our terms :)  )  It affects your life in every instance. Will we have another child? Will the next treatment break the bank? Will insurance pay for this or that? Will this place take our insurance?
   But honestly what MS boils down to is..a human trying. It doesn't shorten your life expectancy unless you have the last stages/roughest type. But all forms of it CAN shorten your life expectations unless you decide how to face it. We dealt with a tremendous amount of fear, anxiety, stress for almost 5 solid months. We faced the diagnosis, the bills, the shots, the anxiety over the shots, the training course, juggling my work to be there as I have to be trained as well, worry over how Kaya would take it, the hospital stay..and then when the shots started..we dealt with mood swings out the roof. The meds would make Steve so stressed that sitting a pan down wrong on the stove would upset him. The steroids made him fly like a hummingbird till the crash came...such high doses they do to prep your body for MS shots etc also cause you to withdrawal for a few days and become very emotional and upset over small things..all the while not feeling like he could get out of bed. It was him apologizing for getting upset, then being upset for being upset!! It was him having anger over the fact that I had to do all the outside stuff once dead heat of summer came on because he simply could not get out. But it was also the time we found out just how much we love each other, how strong we are and that we are in this (and every single thing) together! That Kaya knows Daddy has to do his shot on the weekend so if he has a side effect he can rest while I'm home and be ok to take care of her come Monday. She knows that Daddy is the same Daddy he just "has tired legs" :)
  So I believe MS awareness just has to be taught by speaking the truth, listening to others that have it and how they cope...and by people asking questions. I wish some (especially family) would see that you can ask instead of pretending nothing is wrong.