Sunday, March 3, 2013

Things About My Invisible Illness You May Not Know (A Little Revised)

I was looking through old posts and realized that some of my answers have changed on this one.  Time for an update.  The original post is here.

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.

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