Sunday, October 21, 2018

the start of my week was like!

Talking to some friends over this past week and thought I would add a few remarks here....first a favorite meme of mine BUT it doesn't say it all just a bit of what life it with fibromyalgia then add in the other autoimmune problems I have.

Can't remember where I picked this up so I can't give credit where it is due but this is me on a good day of late.

I had an interesting week with 4 doctors appointments and very little else.  I saw the pain management doctor on Tuesday and Friday about my failed back.  I had my back surgery over a year ago and it still is deteriorating from day to day.  I am trying these injections in hopes of prolonging having to have the surgery again.  I tried the shots before surgery and they didn't work so I am not expecting much.  They already have tried two types facet and some spine stem shot that did nothing but make me pee my pants which the pain management doc things is funny.   Anyway I went back Friday and had 4 shots either side of my spinal column.  1 steroid, 1 marcaine each side.  Kinda worked and today my low back feels better then it has in months.  When you add the 18 pressure points and pain from fibromyalgia in with the back surgery I am miserable at times.  I can't even stand clothes on my body.

The second appointment was with my talk therapist Debbie.  We discuss all sorts of things in our sessions.  I started going to see her just over 2 years ago.  My daughter and my internal medicine doctor thought that I really needed it especially after some drugs for my fibromyalgia symptoms and depression caused me issues.  I take a cup of coffee and go talk for an hour and in the 2 years I have found out a lot of stuff about myself....for example I have PTSD that was related to my childhood and work.  My depression is because of my pain and life change issues...I mean hell fire I am 66 years old and expected to be able to live the good life not one of pain.

The last appointment was with the urologist!  I need to have surgery for that he says but I keep putting him off.  He started me on a different kind of pee pill this week and I think I am already going to quit taking it.  Makes my head more fuzzy!






I did get out to Monday Night Pint Night at McNellies and had a decent beer.  I know not allow will Celiac but you know you got to cheat somewhere and it doesn't cause me much of a problem if any.  I just drink one and then switch to ciders or the stronger stuff like a Bloody Mary!!  It is good fun and a diversion with friends.









I went and had coffee with friends and talked out our latest health issues.  One coffee date with Sharron we managed to settle a bunch of world issues.  Sharron had a brain tumor removed last year, a nasal surgery that has developed 4 types of staph.  We sit far apart.  What is sad is the way the doctors are treating her even though she has provable issues with X-ray and labs.  Like I told her I think it has to do with her autoimmune disorders cluttering up their brains.  Sharron's daughter is a juvenile onset of Fibro and other autoimmune issues.  SO we have a lot to talk about some days.  Love them a lot!

Okay I am off of here cause I don't have much more to say about last week.  I watched quite a few Netflix movies while trying to collect a few more spoons to make it through the day.  I will try to post every week...

Saturday, May 19, 2018

fasting!

This is the third time I have tried to write this post and I figured I should offer a reason if it shows up three times!  Don't know what the cause is but it just doesn't seem to be saving or publishing!
@Rawls.com
I wanted to let people know about an article I read on Rawls.md earlier today about fasting resetting the immune system clock.  The article called Can Fasting Renew Your Immune System is one of several I have read recently talking about how fasting causes the body to shut down some of its working sand reset.  As Dr. Rawls points out the body kills off old and damaged cells to conserve the bodies resources and when it starts getting more nutrients it begins producing new and healthier cells.

I would like to try a form of fasting but my body wouldn't go along with it.  In 1992 I was fasting along with several coworkers on a new fasting diet and it was discovered that I have an insulin producing tumor called an insulinoma that only gives me grief when I try to diet.   An insulinoma is a relatively small tumor, about 1", and can be benign or malignant...only 10% are, and usually occur in the GI tract...most on the pancreas.   Mine has never been found on CT or MRI and Doc told me if I was lucky it would never grow big enough to be found...people die with the tumor not from the tumor.

Anyway back to the fasting...I am going to try the Time-Restricted Feeding form of fasting for as long as I can tolerate it or until I notice a change in my immune system.  I am so tired of being tired!  It won't be a big deal for me because I don't normally eat until later in the day so restricting myself to food only between say 2pm and 10pm daily might show a difference.  I plan on eating a lot more healthier foods and staying away from wasted calories...hmmm...maybe I will limit it to 1000 cals per day.

I will report back and tell you what I find out as I go along.

Wednesday, February 14, 2018

Happy Valentines Day and my first WOYWW in a long time!

Happy Valentines Day and welcome to my desk.  It has been a while since I have posted to WOYWW but thought today was a good time for me to just jump back in...first off my desk...
I haven't really done much but have decided I was going to get started again TODAY!  I bought the little Sizzix die cut machine and a few dies the other day on sale so stay tuned to what I produce!  I did join a group for a tag swap and made this tag...one and only thing in months!
Being and over achiever I made six instead of the 3 we were told to make!
Up close!
On a personal note!
It has been a year and then some for me!  I am not going to whine...much.  Still having problems post op back surgery.  Sat down too hard at PT and caused a hairline fracture to one of the vertebrae.  Thats the bad news...good news is I am developing bone matrix and should be healed in a few more months.

My baby sister Carol Ann passed away on the 16 January this year.  Carol was 6 years younger then me and was a whiz kid with numbers and mathematics and besides being so intelligent she was an awesome person both inside and out!  It came as a surprise when she was diagnosed last May with stage 4 adenocarcinoma.  Carol was married to Stan for 42 years this June.  They have 3 boys and 8 grandchildren.
Carol a couple years ago!

Okay that is it for me!  Go check out WOYWW and follow Julia's info for joining in the fun!

Saturday, December 30, 2017

still here...

I thought I would take a few minutes and write a short post to let everyone know I am still here...alive and kicking...sort of!  I am recopying this from my Okienurse Paper and Ink blog so all my followers get to hear from me!

First off I want to wish everyone a happy holiday whatever religion or lack there of you embrace!  We call it Snowman Day in our house because there are so many different beliefs in the works.  I quit trying to remember who is what and I just send out winter wishes to everyone.  My card this year!  The family all came home for Thanksgiving and while here pitched in and got the house decorated for the holidays...I have an awesome family!
I thank everyone for their interest and concern over my health and wellness issues....

I went to the surgeon on December 23 and was told my set back with the laminectomy and spinal fusion was due to me having broken one of the vertebrae some how.  I am fused L4-L5 and L5-S1 with plastic spacers in-between the discs...evidently sitting down too hard one day caused a spacer to slam into the vertebrae and crack it...it will heal but hurts like hell!  I can truthfully say I am sitting down rather gingerly to keep from cracking more!  I am still having memory issues and haven't been too good in retaining lately...doctor says it will come back...I am hoping so!

I started radiation therapy to a recurrent issue with basal cell cancer on my face.  Evidently they think that this might help and I started treatments a week ago.  The treatments are at Norman Regional Hospital Cancer Management Center five days a week for another 2 weeks.  The treatment itself is painless...unless you count having to get up and go every day.  While it is a low dose of radiation my system already being compromised by autoimmune disorders has decided to react with fatigue, headaches, dry eye etc.  Dr. Yeh assures me that it will go away as soon as the treatments are done.  
The girls at the treatment center took a picture for me to share and I want to point out that I figure it was meant to be because of all the purple!  

I haven't been doing much of anything exercise, craft, cooking etc because of not feeling like doing much of anything.  I try and push myself and I do get stuff done but...limited.   I tend to run out of spoons a lot quicker with this treatment then even before.  I am continually tired and ready to go back to bed even when I have only been up an hour or so.  

Anyway I hope everyone has a great week end and a happy start to the new year.  

Thursday, November 23, 2017

CBD Oil

I have been using CBD oil and THC combination for several years for my autoimmune disorders and pain.  I tried all sorts of opiates and disease/disorder specific medications that would work for a while then all of a sudden would quit.  I was told by a friend in Oregon that she was using marijuana in her cooking for her fibro and she told me I should so I gave it a try!  I was a little apprehensive living in OK where it was illegal and OK has one of the highest incarceration rates for use of minor drugs that I really was afraid of going to jail every time I bought some off the street! Last year when I made a trip to the west coast I visited a dispensary and bought the low THC high CBD vape pen and I am a believer.  That was over a year ago and it is still working but now my supply is gone!  I need to make another trip west!

A friend called me last Tuesday about a new company in OK called Ziggy's.  Ziggy's is a smoke and vape shop where you can buy all sorts of smoking paraphernalia for tobacco, vape, and other substances.  In OK Ziggy's has been under attack for carrying drug paraphernalia and equipment for smoking illegal substances and had thousands of dollars worth of product at their OKC metro stores confiscated and destroyed besides their bank accounts seized.  They have been in and out of court for the past couple years and was ruled not guilty and exonerated by a jury in May 2017.  The jury actually took up for the defendant saying how can they say what the hookas and pipes are going to be used for once they leave the store?  They just sell equipment!

I digress...the aforementioned friend and I made a trip to the store here in Norman and had a good look around.  It sells all sorts of smoking paraphernalia and CBD oil!  I bought a bottle of the Charlottes Web Advanced Oil.  Charlottes Web is a specific cultivar grown by some Colorado hemp growers for it higher CBD content as a dietary supplement.  I have been eating 1/2 dropper full once a day and I can testify that it works better then taking one of my Norco 10mg tabs.   When I bought the oil at Ziggy's I was sold a inhaler cartridge to vape it but this oil is not to be vaped.  According to Mary at CW Hemp it can cause lung damage because of its oil base.  The CW Advanced Oil has 50 mg per dropper full (5ml) of the oil.  Ziggy's also sell their brand a lot cheaper but it is only 100mcg per dropper full.  I probably will be ordering mine directly from CW website in the future.

I know this sounds like an advertisement for CW oil and you would be right!  I have only been eating it a week and it already has improved my life a bit.  It is a food supplement not a hallucinogenic drug.  For you skeptics out their we would be in a world of hurt if we didn't believe that plants weren't drugs.  Digitalis comes from the beautiful fox glove plant and makes my heart beat regularly...Medicinal herbs have been used thousands of years and now we know they are safe because the FDA tells us so...that is a sarcasm!  The supplement comes in 10mg/10 mil Everyday Hemp Oil, 25mg/5mg Everyday Plus, and 50mg/5mg Everyday Advanced.  Of course you know me the overachiever I bought the Advanced...actually I am cheap and was being thrifty!



Anyway check it out and see if it is for you!

Thursday, November 2, 2017

Connections!

I was having coffee with friends the other day and we were talking about all the autoimmune disorders WE have.  I find it amazing almost daily when I talk with other chronic pain people about various things how a like we are in out lists of autoimmune disorders.  I know!  We are a doctors nightmare on the hoof and I suspect that the doctors would say we are bitchers and complainers feeing off one another in discussing the trials and tribulations of our disease and disorders.  I call it group therapy...these are the only people who really understand what I am going through cause everyone else seems to think I look too good to be too sick!!

An article I just read on Celiac.com called Sjogren's Syndrome: The Link with Celiac Disease and how people with Sjogren's benefit from a gluten free diet.  It isn't fun and it isn't for everyone but if you get relief from your symptoms why won't you do it I asked a friend.  I have multiple auto immune diseases and don't know why I am so blessed.  What is an autoimmune disease?  It is a condition in which your immune system goes haywire at attacks your body.  Why does it happen?  Doctors aren't sure but it attacks women more then men.  Autoimmune diseases can be primary or secondary...it is caused because you all ready have one autoimmune disorder.  It started out in my childhood with a thyroiditis at 10 years of age...I have been on Synthyroid all my life.  My autoimmune have been adding up throughout my 65 years of life.
My list:

  1. Thyroiditis at 10 years of age post tonsillectomy.  I was so sick.  I don't know if that was a cause...I was told no but I wonder!
  2. psoriasis at 11 years of age...I was on antibiotics for the above
  3. Irritable bowel disease at 17 years old
  4. Roscea at 25 years old
  5. Sjogren's at about 30 years old
  6. celiac disease at 58 years old
  7. Fibromyalgia isn't considered an autoimmune but I think it will be because Vasculitis is.  
So many things out there now days!  I just know that there isn't a cure...

The early symptoms of many autoimmune diseases are very similar, such as:
  1. fatigue
  2. achy muscles
  3. swelling and redness
  4. low-grade fever
  5. trouble concentrating
  6. numbness and tingling in the hands and feet
  7. hair loss
  8. skin rashes
    There are treatments but no cures.  I have been given so many meds for the issues that I had trouble remembering from day to day why and what the pills are.  I have really trimmed the numbers down over the past couple years.    So many doctors...endocrinologist, dermatologists gastrologists, rheumatologists, internal medicine, neurologists etc.  An endless list of office visits and tests.   The best thing I have found to help myself has been the gluten free diet and elimination diet to get rid of what causes the inflammation and flare up.

    More later!

Thursday, September 7, 2017

Day 7 Blogging Along with Effy!

TODAY’S NUDGE: Dump Your Mental & Emotional Purse all over the table that is your blog. Don’t sort it. Don’t apologize for any of it. Just take an inventory, in list form, and let the old tissues & twenty year old mints fall where they may.

I was just thinking with the last posts that I had said more then I probably should on an open form because there are all sorts of people out there that thrive on reading  this kind of stuff.  I don't think I want to dump my mental and emotional purse all over the table.  I have depression and PTSD...don't know that you can separate the two...and I tend to over verbalize/type things that come back and haunt me.  

I don't think I want to do this prompt.  If I do I will come back to it later.