As much as I would love to begin this post with a wide variety of positive memes and quotes, it is just not in me today.
The struggle is real and building.
The internal battling of the autoimmune system is wreaking havoc on every part of my being.
At least that is what I’m going to blame it on.
Yes, stress induces the flares. Weather changes can also have a bearing on them.
Today it all comes to a head.
I am one hot mess.
What led up to this?
Life! Stress! Health!
The Rinvoq, for my RA/overlap began to show side effects that outweighed the benefits. A decision was made to discontinue the use. With that being said, if my calculations are correct, I’ve been off of all RA/ overlap medications for 4 to 5 weeks now.
My CRP (inflammation markers) are triple. I was put on a very high dose of prednisone, which comes with its own set of issues alone, then there is getting ready for the move.
Packing and pacing myself at the same time, getting affairs in order, transferring utilities, etc.
Due to being very involved with my health, I know I must receive treatment. Actemra is next in line. I’ve spent countless hours between the doctors office, the infusion Center, the insurance company and the pharmacy, in an effort to have this drug and the infusions covered at the lowest and most affordable price as possible.
I will begin the infusions next week. If my body responds in a positive manner, I will have the infusions every 2-4 weeks. The out of pocket cost is still a cost, but it’s a small cost to get rid of this pain!
The things those with a healthy body do not understand are, or if you are not around someone with a chronic illness on a regular basis:
We are great actors/ actresses- notice we always say we are fine
We tend to know shortcuts for everything, such as, DoorDash, Instacart, Grubhub, etc.
We hide in seclusion because when we feel horrible, we look just as horrific. For me, my face looks sunburnt and dry. My eyes are swollen, my eyelashes have fallen out, my mouth is dry, taking a shower is like running a 10 mile marathon.
We are unsteady in our feet and barely remember what day it is, let alone remember if we ate or if we need to. I have a tendency to go into a state of nothingness. This means, I shut down. I don’t like to move, talk, feel, I just float off into an alternate universe and sleep if I can.
The body burns from the inside. The muscles, the nerves. Everything hurts and aches. It burns like an electric prod is being injected directly into you.
Seeing is hard. Focusing is hard.
The hands become tight, tingly and numb.
You can see that everything still needs to be done around you. The trash needs to go out, the laundry needs to be done, everything is building and building. This leads to more stress. You can look away but you know it’s there. It’s not going anywhere.
You can’t escape fully the mind or the body all at once. They both exist! One takes over the other. It’s a back and forth battle as long as you are awake.
It’s hard. It’s hard to want to text, answer the phone, get up to go to the restroom, even talk.
I want to be positive, remain positive, I know I’m dealing with this because I’m a testimony.
It’s just that today, well, today, I need to be human and feel it and rest.
I somehow also need to rest and not feel it.
I’m tired, I don’t want to feel sick, be sick, look sick.
I just want the old me back in so many ways. Yet again, the new me is so much better, minus these horrid illnesses.
Be blessed friends and stay healthy and strong and positive!
Tomorrow is another day... life goes on