I just read a blog post from Rheumatoid Arthritis Warrior and it really has me thinking.
I can’t count the times that, in frustration at my hands’ inability to actually function correctly, I have thrown things on the ground (floor) because I couldn’t funtion correctly. I can’t count the number of times that DH has gotten irritated at me for throwing things on the ground because I’m frustrated. He gets I’m frustrated but he can’t understand what it’s like.
Unless you understand, you can’t understand.
It is scary. It is irritating. It makes me want to (sometimes not just want to) cry.
He tells me that I don’t understand how he feels coughing all the time, sometimes so badly that he gets physically sick from coughing. And I know that, no, I can’t. But unless you have fought time and time and time again with fingernail clippers to try to trim your nails and you can’t physically make them close correctly without flipping or turning or not even coming close to shutting, you can’t quite grasp what I’m looking at either. The women’s bathrooms at work are all locked. Most take a key (all are keyed alike) and only a few work on the swipe of the badge that opens all of the other doors. I’m having a harder and harder time getting the key to turn enough, without wanting to scream, to open the door and the closest bathroom with a badge opener is four floors away in another building. I’m exhausted. And when I’m exhausted I get a little more careless and I make stupid mistakes and forget things that I’ve done and I know I don’t do it on purpose but it pisses people off anyway. I’m terrified of the elevator buttons (especially the “1” button that EVERYONE has to push). I’m scared of the cat litter box that doesn’t magically clean itself. And I remember the cafeteria in Cape Town where I saw someone knock the metal silverware caddy over and the silverware spilled out all over the floor and they picked it all up and put it all back in the caddy and put it all back on the counter for customers to take silverware from. How many other places do people touch the metal (or unwrapped plastic) silverware/stirrers/straws/whatever and I maybe be taking my life in my own hands using them? Or eating on the not so very clean table? Or opening the bathroom door without a paper towel in hand? It’s not “just” the pain that isn’t just pain. It’s all of the little things too.
I’m looking at my uncoming infusion and preliminary dr appointment with dread. Do I dare tell her that my hands have been bothering me a 6 for three weeks? What if they want to change my meds? What if it is the orencia? What if it’s not. The infusion center (and my recent colonoscopy surgery center) are having increasing trouble with hitting my veins and getting IVs to take. I’m absolutely terrified that I will need to have a port placed and maintained forever. Ports can lead to infection. I can’t take a chance of infection. Infusion cetners are covered by medical insurance, I could get orencia as an injection but that is covered as a prescription and my prescription coverage isn’t included in my medical out of pocket maximum and the injectiosns are TWO thousand dollars a pop and I just made my annual out of pocket max for this year.
I’m scared too.
I’m terrified that I will be a burden on my kids when they have their own lives to live and carry on with.
I’m scared of not having anyone
I’m scared of the medicine not working
I’m scared of not being able to keep putting in 60 plus hours a week and what that will mean to working
No, it’s not “just” pain…
April: I doubt this will help, but I love my port. I have had one for 14 years now and I fight hard to keep mine. They make infusions a breeze.
I cannot speak to the RA med, I use Rituxan and it is the second best medication (and the second longest) of the biologics I have used. Remicaide was my first, best and longest used.
I hope you go ahead and talk to the doctor.
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I’m scared… but right now I’m free and clear for the rest of the year on out of pocket maximums so I guess starting to think about it now is a good thing… I see my PA on Monday but not my doctor doctor till May… I think I’ll talk to Deshawn on Monday and see what she has to say.