I’ve been thinking about re-starting my blog for several months. Then things keep happening and I get so far behind and it’s the least of my worries. However, as challenges have presented in 2022 and continue to block my lane, I decided to finish up this post I started many weeks ago and set it free.
As gentle as an angry 42-year-old with health issues of that of an 95 -year-old could, I flung the door open to my Jeep, jumped out and proceeded to karate kick my garage door that was erroneously bouncing up and down in my brand-new gold and hot pink monogrammed sandals. I didn’t know whether to cry or laugh. I honestly wanted to slide down that garage door and crumble into a ball and sob. And here’s a good place to add, in my driveway, which earlier in the day had been swept clean of the neighbors TREE which had landed across it in a storm the night before. Also, should be noted this is the SECOND time said tree has taken up space in my driveway in the last few years.
Why is it when things go wrong, they just plain go wrong? Or they keep going wrong? One wrong turn leads to another, and you are in deeper and deeper. Since February, I have battled what I consider my most challenging fight with myasthenia gravis. Two surgical procedures with complications, one a pretty big one, fluid on my lungs which has resulted in very low oxygen that are likely reflective of the work my lungs are able to do at this point and time because I do have a rare neuromuscular disorder. Some days I just live with the condition I am in, but early last week as a breathing machine arrived at my house to use at night and I lost my sh*t.
Like many things with MG, I am not sure why this is happening. My first question was how soon can I get off this machine to which the tech responded people don’t usually ever get off this machine.
I’ve spent more time on the phone, emailing and googling trying to piece this all together and get it fixed”. It’s literally like having a second job managing my health right now. There is NOTHING like nothing, I wouldn’t do to feel like a normal person again. And I use the word “normal” loosely because after all I’ve been battling MG since I was 5. I’m not exactly normal. I get plasmapheresis treatments on the regular, have a goose egg sized fistula in my left arm, pretty much a permanent RB face due to being unable to move my muscles from my MG but those are all my norms. I’d pay a serious buck to go back to that normalcy.
I’ve got a million questions and no answers. I’m trying to give myself grace and take each day by day, one step in front of the other and know these experiences are going to help me be better along the way. My social life has halted to a very slow crawl as I navigate how to tackle these obstacles. To this point in my life, I’ve been successful in using humor to guide me through stressful mishaps and my health. Thus humor has been a bit harder to find this go round. The level of severity, a little more severe this time. A serious debate with my own mortality stares at me in the mirror. Where is this disease going?
Here is where this post has me stumped, not quite able to tie it all together and wrap it up. Honestly, I’m not really sure of the purpose of sharing all this but as my days stuck at home grow longer, I know I’m also desperate for a creative outlet and if you saw my attempts at sewing you’d beg me not to restart any of those projects!
So maybe it is a gentle reminder to others about what it is like to face adversity with your health, which seems to have come to the forefront over these last few days over what has happened in our nation. Whether that be a chronic illness, rare disease or a women’s issue, the next time somebody shares with you how they are feeling or what is going on in their life with their health, validate them. It’s not about you. It’s about the person feeling safe, being able to vent and make choices from where they sit. Unless you’ve lived with health adversity, please don’t make judgements on others on how they navigate their future.
Lastly, I guess I share this to be real. I do not need sympathy or prayers. If you can do anything, take action. Hug your loved ones tighter. Be kind. Be less judgmental. Hold open the door. Make amends. Give the kudos and tell people what they mean to you. Rescue a dog (preferably one that doesn’t leave nuggets near your pillow, ahem), donate to your favorite charity, buy somebody’s lunch. If you are thinking about somebody, text them and tell them. I will not be deterred from using these times of challenge from finding the silver linings and know it could be so much worse!
Until then, I look forward to the day when I can karate kick this machine right back to where it came from…….
