I have been horrible at blogging lately and I’ve had quite a bit going on. I am exhausted but trying really hard to get stronger and stabilize. The thing is, it the hardest thing EVER. I suppose one could say each day of the last 15 years I’ve been working to strengthen my body and stabilize. It just hasn’t worked. This time, I am focusing 100% on ME. I am not letting any negative thought into my brain. I am not feeling sorry for what I cannot do and I am NOT worrying about being a complete sloth. If my boy tells me to sloth, I SLOTH. This is something I’ve never done; listen to my body when it needs to just rest. I have always pushed it hard and tried to make with work through the rough days.
After the debacle that was January-February and early march with the PICC and PORT catastrophes I realized, I need to find a way to live because my body sure as hell isn’t going to just simply do it on its own.
I have always had a moment of rest and meditation/prayer in the morning and evening. I now take time whenever my body tells me to. I DON’T push myself to walk to the bathroom if I know I am not having a good day. It is better for me to use my wheelchair more than to force my legs to try to carry me there until my brain passes out.
Everyday I try to walk outside, but if my body says no, I try to get in the pool. Inside the warm water I feel like a human. I cannot even describe how nice it is to be submerged and work my hips and knees in the water. They are so swollen and don’t like to move much BUT in the water they do so much better.
I try to force myself to stay awake longer, does it work? Not always. BUT I’ve seen more 9pm TV shows in the last 2 weeks than I had all year. Good news is they’re all new episodes to me, HA!
I am on so many meds that are expensive and powerful. It cost me 17THOUSAND dollars for a 3-month supply of my one medicine. Isn’t that intense? INSANE. I know I say this a lot but I am very lucky to have my parents as my parents because they know insurance and were helpful a few years ago to help me find the best group of plans to help me cover most of my med costs. I pay a lot in monthly premiums but then my expensive meds are all covered. THANK YOU JESUS!!!!!
Mastocytosis. Google it. That’s me.
I haven’t read a real book in a long time. Since November of 2013 to be exact. How do I know? Because that’s the when we closed on our blue house and its when I had to concussion that took my ability to read. I have been reading more and more, each day. That’s a big thing for me. Until recently I had only been able to read small blocks of text, not pages!
Life will never be how I dreamed it would be, BUT I am pretty damn lucky to even just simply be alive. I owe everything to my mom and dad and all my doctors that have formed such close relationships to me. (Fischer, Shah and Afrin.) Thank you.
I am hopeful for the day in which Joshua and I can have a “real adult” relationship again and not one in which he has to care for me and keep me alive everyday. I want to have fun!
When I lay in bed at night and dream of the day Ill be able to LIVE again, I think of Joshua and I on a cruise, eating ALL the different foods, dancing and drinking. Weird thing to hope for, I know. When we used to travel we had more fun than ever. I miss that…we were cool. For real.
Good news, Penny got new doggy medicine that has fixed her issues! So- far so good. I mean not the “mental issues” she has, she’ll have those forever. Ha ha.
May 16 I am having MAJOR surgery. Hence me trying to get stronger. I am having the mesh taken out of my abdomen. It was put in wrong and I am having a reaction to it. It has been in since 2015 and it’s been two years of hell. Soon, it will be out, then my abdomen and organs will heal and THEN another surgery to fix the prolapsing organs using my own ligaments and scar tissue.
It’s a bumpy ride but I see some light at the end of this crazy tunnel. Someday, someway, somehow, Elle will rise like phoenix from the ashes of her life.