So here I am, on the struggle bus.
I have a love/hate relationship with patient stories. I try in my own writing and on twitter to keep my chin up, have a good sense of humor and laugh at the ridiculocity of everything — but some days, I just can’t. I can’t even.
So right now, I am sitting on the struggle bus like a kindergartner who can’t remember their stop.
Over the course of the past year I have been making baby steps towards finding my official diagnosis (currently Inflammatory Arthritis, likely Psoriatic Arthritis) and an appropriate treatment plan. Learning to understand the condition, finding a rheumatologist that I trust, and finding the right resources has all been a struggle — but also slightly expected. My family has had their fair share of medical issues and often there is a learning curve to figuring out a condition, who you need to call for that and what the plan is.
I love knowing the plan. If there is anything that can disrupt a go-getter like me, it has to be an auto-immune disorder. There is no plan. We have shots in the dark, and we have a lot of them. We can try this biologic, and if it doesn't work, we can try this other one over here — we have lots. Oh! and each trial of medication will take 4–6 months to see if it really works. If you hurt to much, you should rest, and do less. It also helps to stay active. When you have a new symptom — sometimes you start with your PCP and sometimes you start with your Rhuemetologist.
I am so tired. Every Day. I feel like I have scaled back as far as I can. I realized the other day that I mark the “interested” option on multiple facebook events a week and I never make it to a single one. I like to think about leaving the house but I don’t get out much. When I do it is to get the kids to and from school or maybe to eat a meal in a restaurant (The energy spent going out to eat <or = the energy spent cooking, eating & cleaning at home.)
I feel like I am worse off than I was a year ago. I get in the big picture that the biologics are to help prevent future joint deterioration, and there are meds for inflammation, and meds for pain… but there are days that I just want to be better.
I do not want to have six injections and 186 pills a month.
I do not want to limit my work travel and opportunities for advancement.
I do not want to listen to my kids ask “why do you never play *with* me?” on the playground
I do not want to think about selling the nice new bike I bought at the beginning of the season.
I do not want to say no when my friends invite me out.
I do not want to loose control over my life to this frustrating and annoying condition that I am forced to live with.
I do not want to be on this struggle bus, but here I am. Today I am all our of optimism and motivation. This sucks. Every single part of it is awful and I would really like for it to stop — but I don’t get that choice. I will have to learn to deal with it — for me, for my husband, for my kids…. but I do not have to like it. not one bit.