What to do?

Just when I thought I was getting everything under control I was slapped with the latest disease.  When I was dx in 2010 with Sjogren’s the test result showed I had the RF aka Rheumatoid Factor.  The doctor said this doesn’t mean you will get it but it’s a possibility.   Should have known then with my luck, I would get it and what do you know, BAMMMMM.  First it was Raynaud’s flaring its head on a trip to Boston in the spring, and then the first sign of RA came after working the Raleigh Relays.  The Sunday after I awoke to severe pain I hadn’t felt since I had torn my ACL and tried to sleep with only Tylenol.  Then a few weeks later after the ACC Track & Field Championships it hit again this time worse, it wasn’t till I went to see my Oncologist did I realize how serious it was, the Resident was oh my.  Then my Rheumatologist was like why did you call me, my Oncologist knew why, I already had an appointment scheduled.  I knew it was good, I have gotten good at reading my Oncologist the sadness look on her face, and apparently I was in the middle of a major RA flare.  That brings to where we are today.

Why is it I have to get the extreme with everything, not just Breast Cancer, the aggressive kind that you can only treat with Chemo, oh and u inherited it, finally get it under control after 2 years.  It was after my 3 month scan in December of 2009 when I breathe a sigh of relief thinking yes back to normal.  Yeah right, strange things where brewing affecting several different areas, thank god for being assigned to a Oncologist that was Multi-Disciplinary instead of just breast, and her love for googling things like me.  She narrowed it down to an autoimmune, actually to 2 which both the Rheumatologist and Dermatologist agreed in, then the test.  I learned over the phone that I had Sjogren’s only thing I really heard where the dreaded words incurable but hey we can treat it.  It took another 1.5 years to get that half way under-control.

Now we are at another cross roads, yet another attack, each time something new is added it is worse then the previous.  I guess I was forewarned either last or 2 years back when my eye sensitivity acted up and I had to stay in complete darkness while wearing shades to watch TV.   Now I am breaking out from either the sunlight or heat, will not learn that until you guessed more test like I haven’t had enough already.  Bruises everywhere just appearing over night, purple splotch with purple/red dots on my leg near my knee, heavy legs, swollen knee’s, wrists, feet, ankles, hands, fingers really every damn thing.   They tell you to rest when swollen and to exercise to keep the joint loose, yeah guess what both those make mine WORSE.  I walk everything swells and hurts, I sit down pop them up oh Shit hurt like hell so what am I suppose to do?  Apparently my feet look like sausage according to Carrie.

A lot of things I just kind of ignored not complaining or pointing them out to the doctor’s cause if I did it would be real.   Insomnia, Fatigue, Memory Issue, Forgetfulness to put simple it is like having the Flu for the last 5 years, what people don’t understand is that I have little energy which a have to allocate to daily needs.  Currently all my energy during the day goes to work, and I can’t even do that for a whole day.  It can range from 3 to 10 and when I get home I am exhausted sometimes I fall asleep waking up in a few hours or the next day.  Life is speeding by outside, weekends allow for a little of Heidi time, trips to the Flea Market where I get my exercise walking around 2 to 3 hours window or I guess tent shopping.  Something that takes a normal person 1 hour to do, could take me a week. 

I will be honest I have tried my best to live in denial, like the position I was in when Mom was sick, Carrie is now in that role.  Like me she figured and began to prepare for change, I really don’t want face reality.  That means changes, paper work, sort a like given up, deep down I know it’s not giving up, nervous and stressed that somehow I want qualify or like others go round and round with the system.  Seriously don’t know what to do, what I do know is my body has thrown in the white towel.

I guess my body wanting to sleep during the day and awake at night was a warning sign to the impending flare that occurred over the weekend.  Then there was the bright light issue….hmmmm  I need to step back and do what I did when I was on Chemo, no alarms, listening to the body, waking when it wants, sleep when the eyes are heavy….ugh…….too much thinking to do.