Keeping the Mind Occupied

The most frustrating thing of all is being NED (no evidence of disease) is that every pain brings what if's, and if cancer wasn't enough my ineffective immune system that allowed the cancer in the first place is attacking my body.  Both my RBC (red blood count), WBC (White Blood Cells) and platelets are always in the tank because they are killed as soon as they are created all due to an autoimmune disorder.  Once we put one fire out six more flare out.  We still have no clue why my hands are always swollen, painful and like to freeze and spasm, dexterity is slowly failing and dropping items are increasing.  Stress only increases the problems though there is no way to escape this but there are ways to deal with it.

I keep one end of my tickle blanket (the silk piece which happened to fall of one of them) in my pocket and I run my fingers thru it.  After work I spend an hour or two check the support groups and facebook page and check on appointments and billing for my cancer.  My phone is set to go into Do not disturb mode until 10am, and I block everything out and began work on my hobbies.  Growing up arts and craft where big with my sister and I something are mother believed.  Both are parents were artistic, handy and creative and passed that gene onto both my sister and I.  We have the ability to look at random items or trash and see a use for it. I have been collecting Barbie's and

writing stoies since I picked up a pencil at 10 months. It was just recently that I realized that combining these too would be a great stress relief while keeping my brian active and luckily the latest drug cleared my brain fog allowing my creativity to come back.  I am hoping it stays if not one of them doctors is going to be writing another prescription. 

I currently have several projects that I started but to health had been put on the back burner but this weekend I plan to bust them out.   I have got to put my newly repainted lifeguard jeep back together do some touch up work and it will be done.  I am also working on our recently purchased Barbie RV I was able to get all the stickers on the exterior taken off and applying some chrome.  I will also be painting the bumper, adding a piece to the grill in the front, I have painted all the interior pieces which are drying, touch up will be tomorrow morning, then I will finish the floor, finish removing decals from interior wall and then figure out what I am doing to the walls.   I will also be painting the bumper, rims, and dash tomorrow.  I also have finally decided which barbie will represent my characters, got family portraits done on a bulk of them, still have to take some pictures of a bunch more and decided who the are.

Sadly I lost one of my doctors my ONC surgeon died unexpectedly while visiting a hospital in Scotland, I had just opened up a reminder letter that morning to schedule an appointment.  I had planed to call the next day until I signed on facebook and learned of his death.  If it wasn't for his love and passion for his profession, I would not be typing this blog.  Along with losing one of my doctor several ladies I have gotten to know thru my online support groups have also passed a way, 2013 just isn't a good year for cancer pateints or doctor's.  One died unexpectedly while getting a biopsy of her liver another ran out of chemo's that worked living four kids.  I hate this stupid disease, I also realized today the same frustration my mother had and have made the same mistakes.  Both of us are programmed to go, go, go always on the move multitasking not wanting to sit and chill trying to do what we did before the dx.  Both of us continued to work while taking limited time off, my mom never slowed down till the very end.  Looking back I should have taken more time while getting treatment but at the time I had to do what was best to get me thru the treatment, had I known I would get slammed with another disease I may have done things differently.

There is no way I will ever be able to go back to the way things were, my body can no longer take it.  I must slow down and figure out what is best for the long run.  I want to enjoy what ever time I have left right now I have a little more energy than I did early in the year but that is because I have been blowing thru my sick leave right know I am working 4 to 7 hours and have spent more time in Chapel Hill trying to get everything under control.  The hardest part is I have to take a vacation just to recover from my vacation, I have no energy, even a 30 minute trip drains, work takes up 75% to 90% of my energy during the week leaving with limited energy to clean, go to the movies, do something fun, and eat.  My Weekend is recovery depending on what transpired at work I could basically sleep 24 hours on the weekend, sometimes I get to do something and other times I don't.  I try to go walk the flea market at least one day on the weekend to get some exercise in and a little sun.

July 9th is another scan day so scananiety is in full effect at least I will be able to visit a gem of a store I found the Swell Shop, a doll shop that sells new and used dolls.  That is where my sister and I found the RV which we got for $12.