Saturday, December 10, 2016

rainy day thoughts on my health

In addition to polymyositis the rheumatologist also thinks I may also have rheumatoid arthritis (RA).  Yeah I can't even have one illness, I have to complicate things with two.

 It may take a long time to get a definitive diagnosis. Which is fine with me, cause I don't really want ANY of the diagnosis.

Doc wants to put me on plaquenil and wean me off the prednisone.

Love the medical profession...oh this medication is working and returning to you function and quality of life? LETS CHANGE IT!!

Plaquenil scares me for its eye side effects. I am still grappling with the effects from the PVD that happed this summer.

I have to look at all the drugs being offered with the knowledge that what ever I take I will be taking for the rest of my life, and all of them, ALL of them have nasty bad side effects that will shorten said life.

Cruel twist eh? The cost of feeling better and having quality of life again is a shortened life.

I'm also haunted by the knowledge of where the dx of RA and those medications will take me. I have spent the last 33 years watching there effect on others.

Knowing how the story ends, makes it hard to want to read the book.

Thursday, December 8, 2016

December the 36th

On an antibiotic for pneumonia, trying to stay in bed. Been sick since Nov 19th. Only one disk of Vikings left then, I think I'll be up trying to clean more. This day is not one I like, bed is the last place I should be. It's the 36th anniversary of the death of John Lennon.

You would think after 36 years the pain would subside. I try to let the hate and anger go each year, and the day pass quietly by. But then there is this...a rose bud opening on this date year after year when ever I am near rose bushes. Somethings just deify understanding.

I'm not sure I ever shared the 8th of December rose story before.

Let me share now.

That first anniversary of John Lennon's murder was so hard. Ugh. Incredibly painful.

This was in the fall of 1981. Yeah, I was quite a messed up child at that point. Damaged so severely I was self injuring on a HOURLY basis, and living 24/7 in a suicidal state. John's murder fractured the small bit of sanity that was holding me together.

I took to wearing that orange shoe lace around my neck as a memorial to him. I had planned to burn it on the 1st anniversary of his death. December 8, 1981 I went out to my rose garden to burn and bury the shoe lace and discover one single red rose bud on "Master Mike" (yes my rose bushes had names.)

It was a powerful sign....and quite likely saved my life that night.

Each year post that for 13 years I went to that bush on December 8th and was greeted with a single rose bud. I lite a while candle each anniversary and then put in in a box with the carefully clipped bud.

Year fourteen, I lite all 14 candles and then buried them all.

14 candles and 14 rose buds.

I was done grieving.

Grieving, not forgetting.

I stopped looking for the roses. Sometime around anniversary number 25 the rose story came up on December 8th in a conversation at work. Co-workers were a little doubting. So on my break I left and went to my old rose bushes and returned with a single red rose bud.

I can't explain it. It's a small bubble of peace that is given to me by the universe.

***On and interesting side note. The above school picture was refused by the toka staff. They said and I quote "It's not appropriate for the year book."

???? I have no idea, why they deemed this to be so. I can't find anything wrong with it. I thought at the time it was the shoe lace. But really I honestly think they were being bullies and tormenting me like so many of my classmates did.

That picture is one of a small handful of unguarded ones that actually capture all of me and accurately portrays what and who I was at the time.

Thursday, November 24, 2016

Thanksgiving 2016

Last night at work was a whirling chaos of endless call lights, medical emergencies, over fed fish, malfunctioning alarms, mountains of paper works, a late start on my med pass and then getting behind on the pass as I stopped to call 911.

There were unreachable goals, unforgiving deadlines, fire men, extra laundry, plus my fever and a snotty nose. Topped off with foggy glasses, and itchy face from wearing a mask the whole shift.    

...and, I loved every second of it.

Being on Prednisone has greatly improved my quality of life and significantly decreased my pain level. My work week just flew by, and I am a little disappointed that I'm out of the game for my usual days off.

Far cry from 6 weeks ago when I was fighting to get through each shift and seriously thinking I was going to have to retire and find a less physically demanding job. I'm so thankful this week for my wonderful work family, amazing residents, and that blessing of prednisone.

Wednesday, November 23, 2016

Wednesday, November 9, 2016

Shout out to all the spouses of healthcare workers.

I can remember talking to my new husband and telling him there would be days I would come home from work a sobbing mess. When I had to endure things beyond what my heart and soul were capable of.

That there would be days I would be caring for a resident I had grown to love, and had to watch them die an agonizing death. Deaths that even medication could not make painless. You can only watch so many people die before it erodes your heart.

One those days you need to talk.

You need to sob and be held.

You need to purge the sights and sounds from your soul to keep them from suffocating you.

I told him that on those days he just needed to hold me and listen without hearing a single word I said. Nothing was needed from him other then to just listen without hearing, to witness the fragile vulnerable soul emptying the pain from deep within.

These spouses enable all of us to keep going and not reach a point we turn off our hearts and loose the special light that makes us outstanding nurses/CNA's/caregivers.

They all deserve a high five for what they do for us.

Sunday, October 23, 2016

weight gain

Years ago the endocrinologist said, that after radiation my thyroid, I might put on a "little " weight.

Apparently a "little weight" is equal to 40 pounds on the conversion scale.

I didn't realize the weight was creeping up because I have always worn my clothes 1-2 sizes larger then I am.

I simply grew into my clothes.

NOW circa 2016 the Rheumatologist said I might put on "a little weight" being on the prednisone.

I am NOT falling for that one again!

I'm going to stop wearing clothes!!

Wednesday, October 12, 2016

Day # 6

Day #6 on prednisone. Not even taking the dose prescribed as I am so sensitive to meds that 5 mg would be waaaay too much.

I took 1 mg for the first few days then bumped it up to 2.5 mg.

1 mg works great, eases my pain and gives me just enough energy to function.

2.5 mg has somehow done something to my radiation damaged taste buds and for the first time since 2008, I can taste things.

what a fucking cruel thing this is....


to be able to taste again but not be able to eat, in order to keep from gaining a shit can of weight from the prednisone.

just fuck you universe and your cruel games.