For the past few weeks I have been coming to terms with new reality. I left for a girls week in CA with sibilings and Mom with my bear handling home life. He juggled life well and conquered many parenting tasks as he flew solo. Just before I returned he had another MRI and doc appt. we had hoped it would be a nothing new, no comment kind of appointment. It did not turn out that way, so as I returned to civilization from 3 days of no service and Yosemite beauty our phone conversation revealed that yes, MS was declared. He would be going on medicine, MS had joined our life.
Words are easier to deal with than reality often, especially when they are words that are not fully lived and experienced. MS - a disease we've seen fundraisers for and known from afar, or in others lives. Now it has entered our home and is making itself known to us personally. So far it has been a gentleman, and so we hope it remains, yet its full nature is not known and therein lies part of the struggle of the adjustment. What lies ahead? and how will i live today with an unknown .... will i live with fear stealing my joy or will i live today for today and deal with tomorrow when it comes at me. I am choosing the later.
As the investigation of the numbness began we heard about drugs- lots of drugs, and our first response was NO! Now that reality of lesions has been seen and lived with and new knowledge has been understood we realize that we can eat well- he is up to 3 green smoothies a day (32oz each) and take supplements- his body is getting healthy intake. Yet as new tingles and symptoms occur the thought of slowing its progression down has become a reality. So, when FedEx stopped by yesterday it was to give us supplies for our shooting clinic on Saturday.
I don't do shots well, I tend to avoid shots, if at all possible, I look away, close my eyes and breathe deep. Yesterday I looked at a syringe for the first time and started to pep talk myself "I can do this" mantra. thankfully there is an auto injection tool in the kit so I have a safety net- a way to help without having to fully embrace the needle. I will be learning a new skill this weekend, another tool in the helpmeet's toolbox of life, who knew 28 years ago that my toolbox would get to be so well stocked ? (eek!)
The reality is settling in as I talk to pharmacy company and clarify monthly copays as it will continue for ?life? ???? As I realize that authorizations for me to talk to the insurance company has been lost in transit and needs to be resent- for I am the admin assistant and navigating the system on his behalf will remain in our future for the future. I am thankful to be here to walk through this with him, thankful for past experience with referrals and therapists and doctors that will serve me in the days ahead.
Often it is easy to forget about MS- for it is "invisible". No sign blares and often the pain and numbness is not mentioned, only later does he speak of discomfort, yet its invasion is occuring. It kind of reminds me of the other uninvited guest we host in our home- epilepsy- invisible until it rears its head, one we are daily dealing with in small ways, wary of in some situations and would prefer to not host, yet it remains. The mental adjustment feels similar as the words become reality and the reality remains invisible to many yet feels heavy on some days and minor on others. Slowly we adjust.
Many small changes are happening. On Saturday a nurse will arrive and teach us to give shots. Shots will be given every other day for ???? and we hope and pray he responds well to a new fluid entering his body to keep the mylon sheath from further deterioation. Fatigue is found at times, so an afterwork rest is a time to recharge for an evening of life together. We have begun to exercise, for it is found to help in many ways, and because we just need to do it. We are talking, reading and praying. We are laughing as the bear throws out "MS moment" when he forgets something- sometimes an excuse, sometimes true brain fog.
We are living today, enjoying today, simplifying our lives to what is important and most needs our time and attention. It feels good to slow down a bit. Life is a journey and we move forward to new adventures, not all of our choosing but knowing that it is filtered through eternal hands we move forward. I am learning to stretch, grow and try new things, so , let the shooting begin!
