all about time

  It has been almost a year since I last posted on this blog...why?  A lot of reasons...

• I was in a psychologically good place going to therapy and getting a hold of the ghosts of my past!  I guess like others I believed my pain issues were due to somatic or psychological issues more then physiological issues my lab work was showing.
• I was feeling better...that was partially cause my daughter had moved back to Norman and I had a partner in crime so to speak.  I felt so good I ended up taking 3 cruises in a 12 month time period...pre covid.
• I started with a Pain Management group that like me believed that not everything should be treated with drugs.  I found out that ablations are my friend and we just knocked out nerves...but they are growing back and I am going to have to go back and get them redone eventually!
• I got tired of talking about it after a few well meaning trolls sent me emails...wanting me to buy this or that snake oil to ease my issues and make me feel better.
• then the troll people that made comments about how fibromyalgia and my pain issues are bullshit...their words not mine.  Not to go political but I really believe it is some of the same red folks that think face masks don't help prevent Covid-19 or condoms don't prevent STD's.

The list goes on but that will cover it for now.  People can be such cretins when it comes to anything other than themselves.  I really feel like I am tired of the response I have been getting from friends and family who blow me off with "tell me something I don't already know" or "that doesn't seem any different" when I try and explain the pain of the day after they asked how I am doing!  

Why am I posting today...well a lot of reasons...

1. I am not feeling so hot...no fever, no cough, no COVID-19 symptoms but I just feel like warmed over crap...similar to 11 years ago when I was diagnosed with Fibromyalgia after the other tests failed to show anything wrong! Since then I have learned enough about and added enough autoimmune disorders to my portfolio I recognize that it is part and partial but...I hurt everyday...most days I lie about it.  No one want to know!
2. I am having mobility issues and getting up and down off the sofa can be a real problem.  
3.  I read an article that brought it home that I am not the only one that has these issues and I benefited from the articles I have been reading and I should share them.  

Have you heard of an online support group called The Mighty?  The Mighty has all sorts of support groups and I occasionally read others but started reading in the pain management and chronic diseases forums.  Today I read an article called What the Pain of Fibromyalgia Feels Like. 18 Types of Pain I Experience with Fibromyalgia by Jo Moss.  Go read it...I have experienced all 18 but I think there are actually a lot more that aren't on the list.  

Okay I blogged and plan on continuing in the up coming months.  I hope that passing on this information you get something out of it.  I wish I could find us all a cure but that isn't going to happen but maybe we can make the journey easier.  Let you know tomorrow what the doctor said.  

What brings me relief...both mentally and physically!  I am going to be sad to see summer go!

I have been going through a lot of pain issues recently related to my fibromyalgia and back pain.  Turns out my pain management doctor is a complete piece of s...work and hasn't been doing what he has been instructed to do by my surgeon...Not only that he lied to me on multiple occasions and cancelled appointments the day of my office visit and let me show up to be seen and him be 'out of office.'  This last time I went in to see a partner of his cause he had cancelled the week before and they rescheduled me with him.  The Dr. was awesome but told me that he didn't feel comfortable doing the spinal ablation cause he didn't know what the other doctor had done or not done.  Yeah I made a complete ass out of myself and fired the whole group!  I was upset that they didn't seem to care what hurt and how much pain I was in and felt they could just pick up or drop me...I was only a $$$ to them.

I went to see a new pain management group 10 days later and found out that all I had gone through wasn't necessary...ie I was told at the old office they couldn't inject me more then every 6 months...lie!  I was told I had to have multiple injections before medicare would pay for an ablation...lie!  I'm in agony at that point!  From May 7, 2019 till August 6, 2019 they cancelled 3 appointments and didn't do much.  This new doctor asked me how many needles they use to inject...I only recall one on each side that I barely felt...the new doctor used 6...3 each side and I had the first pain relief from the facet nerves and sacroiliac joint pint I had had in 3 years!  It didn't last long cause it was just Marcaine but it worked!  I will be having an ablation on the 20th September he tells me!

That brings me to the pain scale...  I read an article today on The Mighty by Jenny Cyndalu about how everyone asks you to rate your pain.  I think they need you to rate the pain that brought you in one way and all the other another and I tell them that I live in chronic pain and my 5-6 might be more like a 10+ to others.  Of course they think I am a crock just wanting meds but hey...I am an old ER RN and I know what goes round comes round  I learned with that spinal injection the other day that my back pain was probably a 10 on the 10 scale and once they had wiped that out I still hurt just not in my back...my shoulders and legs ached, all at once it felt like I was wearing a hair shirt and something was scratching down my arms too.   That was a nagging pain that always used to be there when I only had fibromyalgia to deal with and once fell and had all the back problems THAT pain pushed the other to the back of my brain.  

Pain Management scale used by the medical field.

Click on the link above and read what me and a bunch of others responded to her article.  She is right on the spot.  BTW check out The Mighty...there are a lot of good things to read and if you are like me you learn you aren't the only one with that problem out there!

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...

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.

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!

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.  

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!