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.

Stupid Sjogren's

Not sure what is going on have to talk the Rheumatologist in the morning to see if I have to come in on Tuesday or Wednesday of this week.  My entire right ribcage is sore if feels like all the organs want to bust out of the cage.  The joint pain is gone crazy, weird little knots the first was on my hand on Friday the knot is there the redness turned to brown, then last 2 other red spots form one on the forearm and one on the inside of the elbow, both with the same little knot at the center of a red spot.  Pain up my arm from my trigger finger and go figure the path it follows is where these stupid little knots are.   

Before I started taken the Prednisone my platelets were in the toilet and my white blood count was also low.  Wondering if it is some kind of infection, since the right side is all in up roar with pain and heaviness and I had that twice before and no good news came from those.  The first incident on the left side came from a fistula which turned into an infection requiring an emergency surgery and home same day, the 2^nd time I was on Chemo therefore I pissed a lot of people off in the emergency room at UNC as I was put in front of everyone than admitted to the hospital put on IV antibiotics and then had surgery that was a 2 day stay, this time there is no boil or fissure to be seen. 

Pain meds are not during a damn thing not sure if it’s the liver, kidney or gall bladder that is throwing a fit or if it is all of them damn shit hurts just from inhaling and exhaling.  My ONC doesn’t think its cancer she is thinking Sjogren’s, I think it might be both although I have been wrong in the past.  The prednisone has had some good results I can now regulate my body temperature and actually sweet which reduces in the middle night trips to the bathroom that allow me to sleep.  It also got rid of the aches and most of the fatigue but it did nothing for the reason why we started the RA attacking my hands.  The knees, lower leg have decided to also join the party starting on Sunday first with Left and today the right. 

As each week passes the hands have gotten worse before it was one finger on the left now it is three and not to be out done the right side is joining in starting with the same finger as the last side the trigger finger.  Hand swell no matter what is done some days the swelling will vanish for a few but come back with a vengeance. Ugh tired of going to the damn hospital

Life is too short

Looking back I wish I would have spent more time learning to use a sewing machine, I remember finding a beginner's sewing machine made by singer at a yard sale when I was 7 and begging mom to buy it, I wished now that I had been more patient and learned to sew.  Well its never to late Mom's sewing machine is set up in the Doll Room ready for Carrie to feed the thread.  Also going to bring my first sewing machine if it still works.  My first project is one piece barbie bathing suits and swimming trunks.

I have learned thru my long battle with Stage IV Cancer that one can't take anything for granted.  I always pushed stuff off leaving my dolls stored away, sketching plans and pages of ideas waiting to be built.  Working with miniatures allows one to express themselves thru creativity, it is also an escape from the hustle and bustle of a stressful technology base society.   Funny what pushes to do what u have always loved with recently having RA flares and a reduction in my dexterity in my hands has also pushed me to do what I enjoy while I still can.  Somethings I can't something as simple as making a hanger using a paper clip something that takes my sister five minutes takes me hours if I can even do it.

I have decided to tell all the stories I have written using Playscale (aka 1:6 Barbie Scale) thru photo's basically comic book style with the little talk bubbles...There will also be some stop motion video's as well.   My dream is to turn the shed at home into a doll workshop/Museum with displays of my creations and hopefully others in the neighborhood.  I also mentioned to Tonya we could have our own mini town with a barbie scale railroad.  Having workshops/summer day camp where we could teach kids how to use there imagination in making doll clothing, furniture. repair/fixing hair, cleaning them etc.  Maybe charge kids to spend the day playing in the town of Wolf Swamp, getting them outside instead of hooked to electronics 24/7  http://heidyplayscalediorama.blogspot.com.  Electronics will still play a part but at least they will be using there mind and getting some sun.

For now with my new medicine I can have balance work, cancer, rest, & recreation, arts & crafts have become a great escape.  I am hoping that we have finally gotten the right med combo's so I can contiune to work and have some normalcy.  Even though in back of the mind u have a bad feeling especially not having an immune system for almost a month.  Not so sure that it will be good news in July, the pain I had before is gone but the issue it was suppose to be treating remains the same fingers swollen and lose of dexterity, but my body is aching allowing me for the first time in 8 months to actully get refreshing sleep.  The left right side in the usual suspect area isn't quite feeling right, as it always goes I can't quite put my finger on it but with my immune system being suppressed Liver Mets echo's in the back of my mind.

Then u have cancer friends that u meet online some dx before and some dx after passing away each week, the scary part is how quick it happens.  One day they are fine going and the next day a complication and they are gone.  Just last week one went in for a liver biopsy, the doctors needed to check to make sure it was still the same makeup such as triple negative (-,-,-) or the more popular (+,+,-) or (+,-,-), etc, she never made it out, something happen and she was gone.  Two others ran out of Chemo options, and within days and weeks of stopping treatment they two passed away way to early.

Sunday I will have to make a Cancer list appointments that need to made and prioritize them since it means $$$$$.  Another list for items that must be done for work, since the Fall Season will be here before you now it so I need a written check list to make sure everything is taken care of.  I will also have to make a daily schedule that I will have to start following after July 4th weekend.  Having a daily schedule that doesn't change is what is needed with someone with Sjogren's, but with me its a little more complicated since I have other issues like the little Stage IV cancer, fibro, and RA.   I guess we will soon see how my body will handle another season of work the good thing is the practices don't change every other day its all morning practices meaning a lot easier setting a consistent schedule.  My goal to actual work  40+ hours without exhausting one's self and still having energy to do my hobbies, go out to movies and take road trips.  That is the most frustrating not have the ability to do spare of hte moment things, since I have to factor in amount of energy needed and what I actual have.

Over did it today?

Did I over do it the last couple of days?  Not quite sure I think the weather is playing a factor as well and the fact I really don't have an immune system at the moment.   Strange new pains have started and the pain meds aren't doing a thing, the Costochondritis (kos-toe-KHON-dri-tis) (is an inflammation of the cartilage that connects a rib to the breastbone (sternum)) seems to be back in full force.  But also my ribs on the back are hurting when I breath in and out, hoping its not walking pneumonia coming back.  I have been attempting to stretch it out, even that hurts.  And the damn left side of the body is really becoming a pain in my ass.  The RA is flaring big time in my left hand, sharp strange pain in lower left leg.

Thank-ful I have the next week off so we will see what is up, my plan is to go to the coast for my birthday so hopefully I will get this pain under control so I can go to the beach. Also need to find a massage therapist that deals with someone with my unique issues breast cancer and sjogren's, I actually have a prescription for it though my doc isn't sure if my insurance will cover it, but hopefully the ocean will have some magic healing in it.

Clarity

Finished up notes for meeting with soccer in the am, paid and checked off all my medical bills for the month.  I really gots to buckle down on Friday afternoon, so much to do thank-full a much needed sorta vacation is on the calendar.   Currently the office is crazy with boxes coming in and the fastest renovation reminds me off Extreme Home Renovation.  The beginning of this week started off with the most mental clarity I have had since my dx in 2008.  I knew there was some impairment but I have come to realize it was way more than I thought, as I am looking at my notes while I was preparing for my 11 am appointment with my new soccer coach. 

I have decided it is time to go back to some old ways that worked a notebook with check off boxes of everything that needs to be done.   I found my old one from back in the day, since I really have one sport to worry about this year, hopefully I can get back on track.   I have a lot to do before Friday after, get some cheer stuff moved over to their closet in Reynolds, pick up the mascot heads, send some soccer coaches tops out for screening.   August 1^st will be here before I know it, and while the fog that has impaired my brain is clear I need to jump on everything that I can.  I am petrified that once I have to switch back to Celebrex the fog will come back with a vengeance.  I have a feeling I may be talking my doctors into extending the Prednisone, although I have that little voice going in the back of my head.  Cause with prednisone my immune system is compromised; I already feel something starting to brew in my throat and lungs.  Also a little scared thinking the spots are growing crazy in my liver.

I have barley over a month before women’s soccer starts, majority of my freshman class will be here when I get back from vacation.   With this new coaching staff I will be starting fresh just like I did when I moved the team from Reynolds to WB.   Got to review my list of topics first thing in the morning to make sure I get all the answers I need.  Also need to finish cleaning my office before vacation, get the cooler to w soccer and get maintenance to add coolant, surplus two of the filing cabinets to free some space up.

The biggest factor I need to keep in check is stress, which is a little difficult with bills stacking up, and the college foundation will start bitching again about payments…Um yeah I kinda need that money for medication so I can actually make it thru a day, I need food that basically is fresh, no preservatives, no injected hormones, seafood, vegetables, because for so reason in America the foods good for u cost an arm and leg.  If it’s bad for you than its cheap as hell.