Things About My Invisible Illness You May Not Know
The illnesses I live with are: Rheumatoid Arthritis, Idiopathic Intracranial Hypertension & Fibromyalgia
I was diagnosed with it in the year: I was diagnosed in 2006 w/RA, 2012 with IH
But I had symptoms since: age 13 in 1992 for RA, age 27 for IH
The biggest adjustment I’ve had to make is: learning my limits
Most people assume: that I am lazy because I cannot do everything others my age can
The hardest part about mornings are: getting up hours before I need to because I need those hours to be able to get my body to be able to move around
My favorite medical TV show is: House and Mystery Diagnosis
A gadget I couldn’t live without is: multiple size bottle/jar opener
The hardest part about nights are: I have to wake myself up to roll myself over. I don't have the strength to do it in my sleep.
Each day I take: 28 pills, Mon has 32 pills, Fri is 26 plus an injection
Regarding alternative treatments: I listen to and weigh all treatment options that are presented to me. Some treatments have been mainstream and some have been alternative. I go for what works with least side effects.
If I had to choose between an invisible illness or visible I would choose: Visible. I hate having diseases that you cannot always see. I don't mind questions but I hate stares and assumptions. I may be having a day that looks good on the outside and be falling apart on the outside which makes people assume I am fine. I hate that.
The hardest thing to accept about my new reality has been: Not knowing what will happen. Everyone has an element of the unknown but I don't really even know if my medications are truly working enough. I don't know if I will wake up tomorrow and my RA will decide I want to attack a different organ.
Something I never thought I could do with my illness that I did was: go out with my cane or walker. I used to stay home on cane and walker days. This is a huge step for me.
The commercials about my illness: make it very confusing, they either group it with osteoarthritis and if you take this drug you can go run a mile and garden or they show someone who is advanced in the disease in a wheelchair with joint debilitation. They don't show the middle ground.
Something I really miss doing since I was diagnosed is: just picking up and going out with friends all the time
It was really hard to have to give up: independence, I'm still not good asking people for help.
If I could have one day of feeling normal again I would: spend the day riding roller coasters at Cedar Point all day again
My illness has taught me: Patience and the depth of relationships. I learned quickly those friendships that were more than superficial.
Want to know a secret? One thing people say that gets under my skin is: You are too young for arthritis, but I have it in my knee (arm,wrist,hip)-my body obviously didn't get the too young memo.
But I love it when people: I am entirely too stubborn still to ask for help so I love when people help before I realize I need help. My independent streak is still too high.
My favorite motto, scripture, quote that gets me through tough times is: I am tougher than RA.