Today is one of those days I want to scream and scream, and then scream some more because of how frustrated I am feeling right now. It is one thing to have an autoimmune disease as well as Fibromyalgia, it is another thing to deal with the DMARDs (disease modifying anti-rheumatic drug) and the TNF Blockers (tumor necrosis factor alpha blocker). Then if you throw in the fact that I am down to one antibiotic I can take into the mix, well it all adds up to what my best friend jokingly calls me, “Bubble Girl”.
She understands what may happen if I catch a virus that causes a secondary infection; I may not get over the infection. Oh, and before I forget did I mention that the one antibiotic I can take (Biaxin) is famous for shutting down your kidneys? My goofy disease, and the meds I take make for some pretty stressed kidneys. So, that one antibiotic isn’t really an option either for someone like me. My problem is how do I get other people to understand how serious this is?
I try to explain it to friends and family, then they look at me like I am all of the sudden starring in “One Flew Over the Cuckoo’s Nest”. Well, I could wear a mask when I am in contact with other people. Now there’s a suggestion that’s workable right?
In my case, it depends on the situation. Once again, I’ve been invited to another party. I want to go and I don’t want to be considered rude for not going all the time when I am invited. I’ve known some of these people since I was nineteen and invincible.
Another thing that might be worth mentioning is that I’ve been a “biker chick” most of my life. I was building a 1948 Flathead Harley Davidson when my world flipped upside down. I’ve been dreaming about that bike since I was sixteen. Someday, I will ride it (Heavy sigh here).
Sorry I got lost in my own little fantasy world for a minute or two. Getting back on track with why I feel the way I feel right now. The party I am invited to is a biker party. So do I wear the mask? Maybe I should wear a sign that says, “Stand back 20 feet if you have a cold!”. I am sure I will be stellar at the party with those accessories.
I should just quit worrying about the whole thing right? Why should I worry about any of it? If I let myself get any more upset about it, the pain will take my mind off of all of it. I hate being isolated and misunderstood. What would you do if you were me?
Bubble Girl 😦
P.S. I will try to be more inspirational and upbeat on the next post.