In chronic life you get use to going to the doctor, taking handfuls of pills and daily pain. While needles don't bother me to much, they are never desired. Who wants to be stabbed right?
I get a once a month infusion to manage rhumatoid disease. Well its actually stills disease which is a form of juvenile RA. Yes, that's correct- I have a juvenile disease. I've been getting these infusions for about10 months & it takes about 2 hours each time. No doubt I have better things to do but I like to be able to walk so it's kinda necessary.
When I first arrive (after check in) I take a seat outside oncology. At this office this is where all the infusions are done. Once called back im seated & they check blood pressure, temperature and start an IV line. This time has been exceptionally trying. 3 failed attempts to start the iv & an hour later we finally start the bio drugs. I will most certainly have major bruising at failed iv sites. I will have to explain that no, I haven't gotten in a car accident. I will be late home to cook dinner for my family.
They give me a warm blanket and a earl grey tea at my request as I wait for the drugs to get mixed. I get lost in my relaxing playlist made for infusions. After 2.5 hours my infusion machine is finally beeping that it's done. The medicine only takes 50 min but all the iv shinanagains.... I've been here long time. I'm tired and want to get home. I haven't been home since 9am when I went to work.
Infusions and or self injections are something I will have to do for the rest of my life. I have a chronic disease with no cure. I'm hopefull they may find a cure but right now this is my reality. I am so thankful this drug is working but it's a little depressing to be a 30somthing with these kind of medical needs.
I remember very well being a 31-year-old with a new RD diagnosis. I accepted it calmly because I didn't know anything about the disease. There wasn't much info available to the layperson back then, and I really didn't know what to ask my doctor. The terrible pain from the flares and the disability they caused were awful, but I just endured them. There were no useful drugs I could take, and the ones I was given had no effect.
ReplyDeleteI only write this because I do understand how bewildering and frustrating it is to be young and strong with arthritis, and my heart goes out to you, Robyn. But I'll be honest, I'm glad for you that today there are drugs, like the one you have infused, that actually can and do help many people with this disease. I'm becoming more and more hopeful that there will be a cure in my lifetime--and almost certain there will be in yours.
Hang in there, OK? You can do this. And please know that many of us who share RD with you are standing with you, offering understanding, support, and solidarity. Sending a warm hug your way. :o)
Robyn: I have much the same routine on infusion day. Except I get ill during the infusion (dry heaves) so to prevent the gagging and near spit ups they put me to sleep. It makes for a long day. I need a drive post infusion and I use a port instead of an IV. Man, I dig my port. LOL
ReplyDeleteThank you for the wonderful day 3 blog today !!
rick
WOW! That's an awful bruise! I'm on Humira right now, but I'm afraid that this will be my next step in the very near future. Thanks for the insight. Although it's not desirable, the known is always better than the unknown...especially with RA.
ReplyDelete