Painsomnia Mixed With Emotionally Exhausted...
Written: 03/07/2022
Painsomnia is my life. You can find me curled up under 2 blankets with a body pillow positioned behind my back and another placed between my legs to help provide pressure to my legs that are in constant pain due to MS. I can't tell you how many times I toss and turn to try and get comfortable. I am pretty sure it is equal to a body weight workout.
The past few weeks my legs have had such painful spasms that it makes my toes involuntarily curl and stick in a bent position. It is like a really bad Charlie horse. My husband has been kind enough to help massage the knots in my legs. Even though it causes more pain it helps release some of the tension that is built within the calf muscles. Often times the outside part of the calf feels like there is a pinched nerve or something caught. At those moments there are huge knots. The extreme sensitivity in the legs makes it very hard to wear pants. Shorts have become my wardrobe at home.
I am extremely exhausted from not being able to rest at night. It is wearing me down and I frown upon nighttime as it approaches every day. I use my son's daytime nap as my rest time because I know that I have an 80% chance of getting rest during the day.
On another note...
I was scheduled for my first dose of Ocrevus on February 24, 2022. I have been mentally and physically preparing for this day as a new start to my journey. Unfortunately, things have encountered a bump in the road... INSURANCE
We have had the date set since the end of December 2021 with all plans made for hotels etc...
To keep it all short and sweet... We had insurance and now we don't due to being removed from the system at one point. It is a mess, and we are trying to figure out where the issue occurred. I had to have an approval in order to make an appointment but somehow there is nothing. We are frustrated and upset but we all know that the combination of stress isn't good for the immune system. Please keep me in your thoughts and pray that things straighten themselves out in the next few days, so we don't have to play this silly game. I am truly thankful for insurance because it has been a huge help since my MS diagnosis. I know that things will get fixed. I need to be patient and let things happen the way that are supposed to.
This process has many of us upset and disappointed, but we can't let it get us down. We still have to keep positive and hope for the next best thing.
For the past week or so there has been a lot of frustration and anger that has manifested within my thought process. It amazes me how we are able to go through SO many different emotional feelings. I now know how my 20-month-old son feels as he is learning how to deal with emotions. Plans have been put together for the February date since the starting of January 2022. Hotels were reserved, packing was almost complete and all together the transition was mentally prepared for. The waiting game just made me keep asking if I was strong enough to wait for things to clear. Maybe there was a reason behind the setback. We continuously were calling the insurance, they finally fixed the issue and connected with the infusion office. On February 28th I got a call that they approved my authorization once again which meant that I was cleared for my infusion which is set for Thursday March 10th at 9 am. Today is March 7, 2022, which means we are 3 days away from my first Ocrevus infusion. I honestly do not know if I am as mentally, physically and emotionally ready like I was a few weeks ago. I know that a few of my phone's calls with family have not been as positive as they should have been. I have said to them " I am just going to go off DMT. I am done with the medical world and just want to be normal." I know that what I said was not thinking just acting out with anger because I am tired of the pain, not sleeping at night and overall, just want to wake up healed.
I actually just watched a video I made in 2018 shortly after I was diagnosed with MS. It was a video that told my MS story and how I was finally diagnosed. Lots of memories and sadness remain. My journey was rough at the start and things seemed to get better. Listening to how many doctors I stumped and different things that I tried to fix the problems brought back some memories that I still have not grieved over. With MS our journey is constantly filled with changes which we have to learn to accept. In order to do that we have to grieve. This new step has me so worried about the future and what it holds for me. I know that this new step isn't going to cure all for me but maybe it will ease the pains so I can enjoy the littlest things. When I was first diagnosed, I struggled but the DMT helped me grow and learn to adjust to the new lifestyle. This new DMT will hopefully do the same. It's time for the old to be replaced with the new. It is time to put on a pair of new shoes (DMT) and take a walk on the other side of the road. It's okay to be scared, and nervous. We all have a path, and my path is still unclear, but I know there is something positive and good waiting for me to discover. I just have to learn to trust that this decision is the best at this time. No matter if I am ready or not ...
It is time to let go of the past and stop waiting for the future. Take a deep breath right now. Let's live in the present and be thankful for the guidance and support that I have been blessed with. I will be strong, hopeful and positive. I am Renita Strong and I am the Inevitable MS Defyer. I got this!
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