Medical Leave and Sleep

Apparently my body is still trying to catch up on sleep, cause that is basically what I do especially after taking my new meds Methotrexate.  I take it once a week on Wednesday, I picked this day cause I like to take walks at the flea market on the weekends and that is when most everyone has off so if I want to visit weekend I would have some energy.   For those that don't know I have taken medical leave from work in hopes of getting my Sjogren's under-control.  All the medication we have tried so far have not been able to keep all my flares under-control.

What is a flare you ask?  A flare is when my white blood cells attack my healthy cells, it can range from swollen glands on the neck, to inflammation of joints and soft connective tissue like your ribs.   For me I have been fighting extreme fatigue for over a year that has gotten progressively worse, swollen hands, feet and ankles, random itching fits, light sensitivity both eyes and skin just to name a few.   It has become apparent that my body prefers night owl status, which last night it became apparent that most of my cousins are all night owls.  No wonder like 6 that I now of work the night shift, it was nice to be able to chit chat at 3am, although a few of you have day jobs how u manage to say up all night then go to work, I have got to give you props.  Back in the day I could pull that off, but know that isn't going to happen.  Cognitive issues and memory has also taken a hit, I have had to turn some things over to Carrie to handle and have had to come with some spreadsheets to make sure I get everything done and keep track of symptoms for the doctors'.  It is frustrating I have everything written down and forget to tell the doctors...ugh

It was a tough decision to step away from work, but I know that is what is best medically.  What the future holds no one knows, but I do know I need to get back in shape, especially with all these drugs that can cause weight gain.  It is time to look after Heidi, it has been frustrating as the days, weeks, months pass as more issues have risen and the one that scares me the most is losing dexterity in my hands.

Things that would normally take like 5 minutes takes 30, carpel tunnel, sensitivity to touch/heat/cold, locking up, dexterity just to name a few.  For those that don't know creating crafts and scale building is something I enjoy as well as drawing and painting.  I have not been able to enjoy this past time as much due to limited energy and pain.swelling in my hands.  It has been frustrating but I have learned I can do it, its just going to take way longer, and I will have to take lots of breaks.

Whether my leave will be short term or long is still up in the air just like when or where my cancer will rear its ugly head.  It is hard to explain because many think because I am NED that the cancer is gone, its not it is just to small for current technology to see.  I like many other women and men with Stage IV breast cancer live life in 3 months increments.  Every pain or strange feeling can make you stomach drop like your on a roller coast, is it cancer, will the next chemo keep it under-control.  Then there is the ever mounting bills, pharmacy bills, just to name a few.

I plan on spending more time on the coast the remainder of the year, my sister and I are finally getting are pad fixed.  Since we own means we can design it any way we want too.  This has sent my creativity in over drive, it has been a long time since my creativity juices has flowed...Why you ask?  Simple I have been listening to my body, I pay no attention to a clock nor do I set an alarm except if I have a doctor's appointment...lol  With those in the past I had them in the morning no more they are late in the afternoon....It takes at least 12 hours for me to get 8 hours of sleep due to me having to drink allot to keep hydrated.  I get up between 4 to 12 times a night and sometimes I get hungry have to eat then go back to sleep...lol  I am still fatigued but not as bad also my need for pain meds has decreased slowly as my body is trying to readjust to its new reality.

It kills me that I went to sleep at 5am got up at 230pm, ate a little took my pills, its strange I can't eat a meal until 2 to 3 hours after I take my pills.  So at 3pm I go out to get a little exercise in, window shopping as I call it and then picked up some food.  As usually a short drive to Cary Towne shopping Center exhausted me I was sleepy as I returned back home, just finished my meal and it is time for a nap but that is going to have to wait....My plan is a midnight bedtime so I can get my power-walk in at teh flea market early in the morning before the sun gets bad.  As usually shades and a long sleeve shirt and 50 sun tan lotion is the required items to adventure outside.  I have to limit my time outside too much sun not good.

This year is shaping up as a tough year for the family in general, I have an Uncle like me that has been battling cancer he has not been as fortunate as me, another uncle who has been in and out the hospital as they try to save his foot, a cousin a few years older than me fighting an infection.  Thank-full all three are at home with pain under-control, sadly for one the future isn't as bright as he fights daily to see the next sunrise.  Strong headed and stubbornness is characteristics we all have and statistics don't mean crap to us we cut our on unique path. 

It is funny how as children us cousins talked about how we were getting the Hell out of Jacksonville and never looking back.  Many of us got out, went to college, moved to Wilmington or Raleigh, now slowly we are all somehow ending up back in the neighborhood we swore up and down we wouldn't.