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 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 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   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


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


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 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 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.

Day 6 Blogging along with Effy

TODAY’S NUDGE: Write about your hometown, your roots, or where you come from.

I was born in Norman, OK in 1952.  It has changed so much over the past 65 years that it would be unrecognizable to anyone who left and comes back.  The population in the early 1950's was less then 27,000 but the census shows in 2015 it was over 120,000 and that doesn't include the transient university population.  

Norman is most famous for the University of Oklahoma and the Sooners football team I guess.  It is really strange to me that is where just about everyone jumps after I tell them where I live.  I read somewhere that the university has over 31,000 full time students each year.  Famous football players like Sam Bradford, Adrian Peterson, Steve Owens, Joe Washington,Brian Bosworth, Troy Aikman, Billy Sims, the Salmon Brothers, J.C. Watts and many more went to school there.  Famous actors including Ed Harris, Olivia Munn, and James Garner credited with attending OU but as I remember he never graduated high school. There are a long list of famous people but I was always a town girl and only ever attended one class at OU.

Norman had two military bases during WW2...North base trained combat pilots for the and South base had technical training and had a hospital that cared for patients that were injured during the wars.  I remember the bases being here in the mid 1950's cause my step dad worked at the S. base working as an aviation electrician fixing planes.  The bases were turned over to OU sometime in the 1950's and have been developed extensively since then.  

Norman is home to the National Severe Storms Laboratory where my husband worked.  It has changed a lot over the years.  It used to be housed on N Base but now is in a multi storied building on S Base with the Storm Prediction Center (SPC), the NSSL, and the OU school of Meteorology.  There are many big businesses that have moved into Norman over the years!  To name a few there is York, Astellas Pharmaceuticals, Hitachi Corporation,  Cisco, ATT, The US Postal Service has a big postal training center...I could go on and on and on.  So many businesses.

My husband says that the world won't stay the same so I will be happy and they don't have to ask me when they want to make a change BUT sometimes I remember what it used to be and what it has turned into and I wish for those day.

It was a small town and everyone seemed to get along regardless of their religious or political affiliations.  It was a biased, racist, and bigoted city during part of its history but I believe that was due to the population being 85% white and mostly of Southern Baptist persuasion!  When more foreign students came and interacted with the town population it became less so. 

I hate the busy streets and difficulty getting around town now.  Even though the population has grown so much the infrastructure has not grown to handle the traffic in the older parts of town.  I remember riding my bike over to my cousins hour a couple miles away from mine on a two lane road and now that street is 5 lanes and no way would I ride a bike there!

I was brought up in a relatively poor family.  We never wanted for clothes, food, or housing but there never was much money for any thing else.  My mother worked two jobs (nurses aide and waitress) and went to school to become a Licensed Practical Nurse (LPN) when I was young because my stepfather was in the Navy and you can't raise 3 kids on $100 a month salary.  I guess that is where I got my backbone and stamina was watching my mother try and make ends meet!  My mother was 54 years old when she died of cancer and I always regret that she never had time to enjoy her life much because of all the working.

I had lots of family living in and around Norman when I was a young person.  Now there seems to be very few of the family around they either moved off or have died off.  Really sad.  I remember holidays being big family affairs where all of us got together and pooled our resources and had huge meals and did fun things.  I miss those days now!

Well that is it before I get too maudlin and start crying in my beer so to speak.  

Tuesday, September 5, 2017

Day 5 Blogging Along with Effy

TODAY'S NUDGE: What is something you struggle with? What battles are you fighting that most people know nothing about? What's something about you or your life that makes you feel weird, or different, or isolated?

I struggle on almost a daily basis with who I am now compared to who I was 10 years ago.  Aging isn't the issue it is all the physical ailments that I have developed and they keep me from living up to what I remember I was and used to be!

I used to love to cook, sew, craft, do all sorts of things.  I like to travel but it can be a real hassle now since I have fibromyalgia, chronic fatigue, and now my spinal fusion.  I just don't get around as well as what I want to and I miss it.  I have Celiac or a non-Celiac gluten intolerance.  I was told I was and I did research on the webs and found out what I should do for it and went on the diet.  Three weeks later when I had all the tests I was says he still thinks it is Celiac and to keep doing what I am doing.  Travel is not fun when you can't find something to eat!

I feel really weird trying to explain to people that I can't do this or that, can't eat this or that because at 207# it is obvious I don't miss too many meals.  I weighed 242# when this all started so I am doing better!  People tend to judge you based on what they see and I look healthy most of the time...I only go out when I am feeling good so you see they don't see me at my worse times.  

I am not suicidal but this next remark kinda sounds like it.  My sister has cancer and has been given a limited time because of the metastasis and like she said...sometimes it makes you wonder if the quality of life worsens would it be worth pursuing quantity any longer?  I have a long way to get there but I would want quality over a miserable quantity any day!  

I'm done.  More of my life tomorrow.  

Day 4 What really stresses you out?

Day 4 Today’s Nudge: What really stresses you out, and how to do take care of yourself when you’re in the midst of *waves at all that*.

It seems now days the most stressful thing for me is my health issues and what all has gone one in the past 6 years.  It cost me my job, my identity and my health.  If you read back through this blog you will see it has been a journey and it seems just as I am getting on top of it all something comes along and knocks the slats out from under me and I have to start again.

I am a tenacious critter to say the least.  I have to accredit my Mother, Aunt, and Grandmother for making me the strong woman I am.  I was brought up poorer then most but  back then I didn't think I was much different then any of my friends or actually anyone else.  I couldn't do a lot as a child cause we just didn't have money for music lessons, sport uniforms etc.  I started working as a baby sitter when I was about 12 years old to make money to buy things I wanted and the family couldn't afford.  My mother worked and when to school when I was 11-12 years old and it was expected I would help around there house.  There was no 'extra' money to speak of ever.  

I married the first time thinking I would have a bigger and better life then my mother and family but turns out I jumped out of the skillet into the fire and it was so much worse being married to an abusive asshole like I was so after two weeks (yes only 2 wk) I jumped ship!  Lee was a physically abusive person and liked to use me as a punching bag.  He didn't like being married and tied down so bringing another woman into our bed while I was at work was just a okay by him.

I married again 5 years later to an awesome man and have been happy.  We have 2 kids and they are both married with good partners!  My son and his wife have 3 children and my daughter has yet to start her family but has 3 dogs that think Grandmadog is the best!  

I have PTSD, Depression and a lot of ups and downs to take care of myself and get through all the crap I have started going to a talk therapist each week.  I was really reluctant to do so but now don't see how I ever made it through some of my most trying times recently without her!  I talk with her and see helps me see the problem and issues through totally different eyes.   I tried medications for a while and medications just seem to exacerbate the problem for me so I am happy doing it without drugs.

I love crafting and try to spend time doing something each day but since my surgery I am having trouble doing anything at all.  I just lack any creativity or motivation.  I was hypoxic and I have some memory and ability issues right now that the doctor has told me will come back in time.  I hope so and I am hoping blogging will help.   

Have a great day...

Sunday, September 3, 2017

Day 3 Today’s Nudge: Write about something you used to believe

Day 3 with Blogging Along with Effy!  
Today’s Nudge: Write about something you used to believe that you no longer believe and how that shift in belief has changed things for you. 
If you would like to blog along click the link to the right!

I think the biggest thing I used to believe in and no longer do and its impact on my life has been the belief in God and religion.  As a kids we were brought up in a Pentecostal Holiness/Assemblies of God church.  It was a safe haven when I was a child.  My home life was a little screwed up and different then most and I broke off from the church when I was about 17 years old because I woke up one day and realized they condoned the screwed up differences.

What kind of screwed up differences?  Racism, xenophobia, sexism, faith healing over medicine, wife beating and know that kind of differences.  They believed in faith healing, speaking in tongues, purification by the holy spirit, baptism by fire and water.  From a small child I had been told I was lesser then man cause I was made from man and therefore not as good.  I don't remember how many times I was told the story of the Great White Throne and how I would be judged as unfitting to go to heaven.  The AG believed that when Jesus came back that all the dead would rise and walk the earth for 1000 years with Jesus as its ruler.  

I still can't believe I bought into that doctrine.  That I allowed myself to be used and manipulated like that!  My sister brought a black girlfriend to church with us one Sunday and they wouldn't let her in because she was dressed inappropriately!  She was wearing a skirt and sleeveless shirt...but truth of it was her skin was dark.  The deacons stood at the doors and shook hands with those coming in but looking back I realize it was to keep the undesirables out.  I think that's the first time I realized something wasn't right in our little church.  I loved going to church and all the fellowship, the pot luck dinners, the interaction with friends and family it was the highlight to my life during some troubling times.  

My Grandmother and Mother were the ones that would take us to church.  My Grandfather didn't want any part of what he called "that religious bullshit!"  When my Mother divorced the church treated her like she was toxic.  I was 13 at the time.  I actually heard a couple old gossipy bitches saying my mother was "a harlot and would burn in hell for not doing right by my father!"  How can it be 'not doing right' when it was him who went out and had sex with other women and left us at home without much money or anything?  He was in the Navy and would be gone for months and months and my mother worked 2 jobs trying to stay afloat.  My mother refused to go to church from that day on and I started watching what was going on around me a little closer.  

I didn't just 'quit believing' I tried going to other church of protestant beliefs.  I went to Baptist, Methodist, Church of Christ etc. but I saw the same type of subjugation and control in all of them that I had seen in the Pentecostal Holiness/Assemblies of God church.  It was the 1960's and early 70's and a lot of change was going on.  I decided I could change.  I felt from time to time to give it another chance but I never felt the spirit and I just didn't go back.  It just wasn't for me!  I could keep going on but I won't. 

I don't like the term Atheist and tell people I am a Secular Humanist to avoid the flak that comes with telling them you don't believe.  How can you believe in just one god when there are thousands or millions as some believe.  How can you condemn those that don't believe in the same god you do? I have found out that I can be spiritual and not believe in something I can't see!  I take responsibility for my own actions and don't take the attitude that a Deity made me do it.  

Saturday, September 2, 2017

Day 2 Blogging along with Effy Wild

2) What do you really want?

Now that is a good question!  I want a lot of things...

I have of late had issues with memories and I think the things I want most can't be bought or sold.  I lost 3 units of blood during my surgery and while they gave the blood back to me I had a period of hypoxia and my oxygen stayed low even after surgery.  I remember asking the nurse why my oxygen saturation was staying in the 70's...normal is 100% of course.  I am an old ICU/ER nurse and to have a low blood oxygen saturation is not something I would want at all.  When you have the low sats for a period of time the brain gets a little pissed and starts to swell...  I think I will regain most of my function or at least I am wanting to regain all my mental acuity asap.  

One of the things the oxygen saturation issue has caused that I have noticed is my inability to do my art.  I don't seem to have an original thought of my own and I can't seem to get up much more then sit here and diddle on the computer.  I have trouble forming words and sentences and I forget just about everything short term.  I know the doctor said that it was short term and it most likely would all return fairly quickly but I am impatient I want it now.   I want to sit down in my craft studio and create something original, to get lost in the cutting, pasting, painting and creating something maybe only I love.

I have been having problems with my Fibromyalgia and chronic fatigue since surgery.  There were a couple of weeks I had a hard time getting out of bed.  I would go to bed at 12 midnight and not get out of bed till 2-3 pm the next afternoon.  I had trouble sleeping and while I thought I was the medications were not letting me get good sleep so I quit them all.  I still take an occasional Norco or Tramadol when the pain in my back gets bad enough but it seems the narcotics tend to make my ability to deal with the fibromyalgia next to impossible.  I am not lying when I say I live constantly in a 4-5 pain world all the time... 0 is no pain-10 is I am ready to go to the hospital.  My back is the least of my pain now and it takes forever to get this other under control.  I want that control again.  It took me years to get it when I first got sick and when I woke up post op it was gone.

I have a family that is very supportive and a husband that stands by me and helps me to the best of his ability...huh?  Well I am one of those "I will do it myself" people so I tend not to tell him when I need help or need him to do something.  Like he says all I have to do is ask but like I told him I don't ask and he doesn't mind read my needs.  I want to be able to ask for help and not take it as a put down of me, myself, and I when I do.

I could go on and on but won't.  I don't want for much in the reality of goods or things.  I would like more money, more clothes, a bigger house, etc etc but I don't want for it.  What I already have is more then a lot of others have.

If you would like to blog along click this link and it will take you to Effy's blog.

My summer! Day 1 I'm Blogging Along with Effy!

I haven't blogged much this summer and there are multiple reasons why...but then I haven't don't much of anything.  I am a fan of Effy Wild an artist I follow and she is sponsoring a blog along this month and I decided I was going to try and do it as much as I can.   If you are interested in following along with her just click on the link.
Okay so here is the Day 1 prompt from Effy Wild....

Today’s Nudge: Start where you are. What’s going on with you? What’s on your heart/mind today, right now, at this moment. No back story necessary. No disclaimers. What’s up, buttercup? Spill it.

My last post on June 23 was just 3 days away from my back surgery...  I had been having worsening symptoms of low back pain and inability to walk or get around well on my own.  That is an understatement to tell the truth!  I had grade 1 spondylolisthesis where the vertebrae and disc's are slipping.  What were my symptoms?

  1. Back pain that shot down both cheeks of my butt
  2. The pain radiated to the outside of my thighs and down my legs.  
  3. Both legs would start to ache and feel so weak if I did most any activity.  Walking around Walmart or even cooking dinner would cause them to ache and my toes in my right foot would go to sleep.  What was funny was the achiness would settle on the tops of my feet not the bottom and I thought it was the sandals I would wear causing it.
  4. I had so much trouble walking I tended not to go to any stores without the mobility carts to shop.  I started walking with a cane to help me balance.  
  5. I would fall around a lot.  I fell on Christmas Day 2015 and broke my left knee, hurt my back, and hip.
  6. I had trouble sitting for any length of time cause my low back would hurt and if I tried to bend over I had shooting pains in my back and legs.  
  7. I was one of the lucky ones that had problems with incontinence.  I had gone to a urologist and paid megabucks for tests.
  8. I became depressed and started going to a psych/talk therapist at my daughters urging.
I tried conservative treatments to try an alleviate the pain and other issues but nothing seemed to work.  I took anti-inflammatory drugs over the counter and prescription, steroids, anti-inflammatory diet, eventually ended up in a pain management clinic where I received a back brace and injections in my spine by a pain management doctor.  Nothing seemed to work to help my pain or other problems.  
In February of 2017 the pain management doctor told me that I needed surgery to fix my back and referred me to a neurosurgeon!  

I had to wait from February to the end of May to get into see the doctor.  First thing he did was to take X-rays and get and MRI showed a Grade 1 with 20-25% slippage in the lumbar vertebrae!
You don't have to look too close to see the slippage!
As you can see it doesn't look like much is off but it definitely caused me a lot of issues.  

Doctor Cochran told me that I needed a lumbar laminectomy and spinal fusion and the sooner the better to help stabilize my spine cause it would only get worse!  I had been told this by two other doctors so I told him that I was ready to get rid of my 'issues'!   Heather had come for a visit on Fathers Day and had gone with me to the doctor so the surgery was set up on the following Monday so she could be here. 

Side view of hardware and new discs...I have titanium screws!
frontal view post op

I had the surgery and had a few problems with bleeding and oxygen saturations but that was nothing compared to the fact that I woke up for the first time in a long time with no pain in my legs or numbness in my toes.  The post op course has not been easy but it gets better every day.  I started PT yesterday, I am off most all the meds including pain killers and muscle relaxers.  

A few pictures Heather documented of the process!  
My Cheering squad in the waiting room!

Me pre-op
me post op

My incision.  I can't even tell looking in a mirror now.  Impressive considering all the work!

I have really progressed a lot in the 2 months since I have had the surgery.  I have had some ups and downs but the biggest thing is I have the ability to get around a bit better now.  The pain isn't as bad as it once was getting up and down out of a chair or bed.  It will take a bit longer...about 6 months the physical therapist told me to actually get to feeling like it was worth the trouble.  I think I already do!

Friday, June 23, 2017


A friend of mine recently had brain surgery.  Sharron had a smallish...boulder size tumor sitting on top of her optic nerve that she had a horrible time getting anyone to listen to her about needing help with.  After about 5 months of headaches and putting up up with the damn thing the doctors at Stephenson Cancer Center in OKC listened to her and removed the darn thing.  It was benign but still a relief when it was out!  I love it when someone tries to explain away a benign something as not being as bad as a malignant something.  Malignant means it can spread other places while benign means it usually stays in that one spot.  Her tumor kept growing and like with malignant tumors there is only enough space for the brain and not much else so she was having a horrible time.

Did you read the spoon theory post before this one?  The one on fatigue?  Well Sharron posted this article on Neurofatigue...and the invisible consequences.  It is another example of neuro fatigue and some good hints on how to combat it.  Most brain injury people have some degree of this type of fatigue and it would only stand to reason that people who have fibromyalgia or other diseases that affect the brain would too!
Don't you love this little guy and his depiction of Neurofatigue?  Do you ever have days like this?  I know I do!  Call be a bowl of melted jelly and you have the description correct!  I can't stand light, noise, heat, cold, I turn off the TV, radio, computer everything.  I am not feeling feel well at all and can't stand any outside stimuli...all I want to do is veg out in my bed!

The article talks about different things you can do to help with the fatigue and get the rest you need.  Check it out it is worth the read!

Thursday, June 8, 2017

Spoon theory

In an earlier post I wrote about the spoon theory but can't seem to find it now!  I thought I would rewrite it in hopes that if anyone is having issues with their disability this will help them understand it better.

There are a lot of articles out there and a lot of people that are claiming ownership of the theory but it truth it has been around for a long, long, long time!  Wikipedia says The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.   According to Wikipedia the term spoons was coined by Christine Miserandino in 2003 in her essay "The Spoon Theory" that she posted on her website   

When I first 'came down' with Fibromyalgia I tried to keep on keeping on doing all the things that I had done all my life.  I found out pretty quick that was a road to disaster for me and I would find myself doing more harm then good.  I just couldn't believe that my fatigue, brain fog, etc was anything more then my working too many extra shifts at the hospital so I cut them out and I still had issues.  I figure I must have been issued 100 spoons a day back in the old days but when I got sick in 2009/10 someone stole 95 of spoons and left me with only 5 and left me wanting/needing more.  I found out really quickly that I couldn't cook dinner, vacuum, do laundry, go to the store, or garden all in the same day!  Dinner usually took a spoon, laundry about 3, shopping at Walmart all 5 and forget the garden unless I broke it into manageable bits.  I learned that I had to prioritize and schedule time to rest and recover or I flared up and stayed down for days and sometimes weeks.

Simple things like getting a shower and getting dressed some days took all 5 spoons and I climbed right back into bed!  It has taken me years to finally learn to manage my spoons and cope with life.  I used to feel so guilty that I am unable to do things I used to do.  I have found out that I have to be the #1 priority in my life or nothing gets done.  I have lost friends because they seem to think I am a flaker and not being truthful with them about how I feel and why I can't donate time and energy to stuff I used to do routinely.  Their loss cause on my good days I am still awesome!  I can't hike or even walk through Walmart anymore without using up my allotment of spoons.  Luckily as time has progressed and I have learned to manage my spoons I have gotten more spoons and the ability to do more.  I will never be back to 100% but I am better!  I live each day at a time and I never count on the same number of spoons to spend in a day because if I count on 20 I end up with 5 or vice versa.  I am a spoonie (embrace the spoon theory) but there are some that aren't.  I read this article on The Mighty the other day my Jennie Small entitled Why the Spoon Theory Doesn't Fit My Life and she has a valid isn't for everyone!  That is something else we need to remember...there is no one fixer upper for any group of people because we are all so different.  We need to be tolerant of the difference.

I just read an article on Spine Universe that says Fibromyalgia is a real disease...hmmm...I could have told them that!  The article titled

Fibromyalgia Study: It's a Real Disease

The article talks about research being done by Dr. Guedj of the Centre Hospitalier-Universitare de la Timone in Marsaille France.  Dr. Guedj was the lead researcher in a study examine blood perfusion (abnormal blood flow) as possibly being the cause of fibromyalgia!  I am really excited about this because if proven positively they will start researching why there is abnormal blood flow and we will get to the bottom of the cause of fibromyalgia.  

Right now Fibro and all its pain is merely a syndrome and not considered a real disease and I can tell you from personal experience it can cause all sorts of havoc in your life being "not real!"  What kind of problems...well if I go to the ER I feel I get treated different with the diagnosis.  I definitely have fibromyalgia cause I participated in a study where they drew lab and I was 100% positive...some were only 80% or less.  The lab is only available for research purposes right now but hopefully will be out on the market in the future.  

My proof I get treated different comes from years as working as an ER nurse.  I went in with Chest Pain and when the triage nurse found out I had fibromyalgia I was given a seat in the waiting room and not put on a monitor or taken taken to an exam room.  If I had not had that diagnosis on my chart  I would have been treated much differently and would have been taken to the back immediately!  Fibromyalgia patients are considered drug seekers and treated much differently... I actually was told I needed to lose weight and exercise more and my pain would go away! don't think so!  

Anyway read the is a possible reason for Fibro and still under research!  

Thursday, January 12, 2017

OMG! and all at once it is 2017!

I have an awful head cold and I am flaring up with my Fibro and unable to sleep.  OH NO!  Yes it means I get on my computer and start spewing forth shit that normally stays dormant.  I have been having fibro issues for a couple months now...ever since the presidential elections!  I know!  Stress plays a big part in my flare ups and it is stressful times!  I watched Obama's farewell speech Tuesday night and a mantle of dread and actual fear has settled over me.  I went to my psychotherapists appointment on Wednesday and spewed forth all sort of stuff and she told me that everyone she has seen has been expressing the same fears and sense of apathy!  Not just me is a good thing...I thought it was the fibro fog and my memory issues!

I remember sitting in a classroom back in the stone ages and a teacher asking us had we given any thought to how old we would be at the change of the century, where we would be, what we would be doing?  WOW!  Now that was a loaded question because at the time I was only 9 years old living in Oklahoma!  Turn of the century was still about 40 years off...plenty of time to think about that later.   Women had been given the vote back in 1920 but here in Oklahoma things move a little slower then national average and some women still weren't voting much or voting what their husbands told them to vote!  The civil rights movement was scandalizing us all!  It was 1961 and a social revolution was in the making.

I was very religious back then having been brought up in fundamentalist holy roller church...Assemblies of God and Church of Christ!  What was I going to do?  I was going to get married young and spit out babies until I was incapable of doing so.  True story...that is what I thought God wanted me to do cause I had been told my goals all my life had been be a God fearing/loving woman, get married to a God fearing man, have God fearing babies and take care of them all.  God, Family, Work was the mantra of the day!

Little did I know that one year later events in my life would change the course of my life forever.  My mother and step-father Melvin divorced.  I was flabbergasted because this just didn't happen in our circle and family very much ever.  I didn't know my beloved grandparents had been divorced and reunited multiple times at that point.   I just knew people at church began making statements about our family values when they divorced.  I began seeing a side of the church that was pretty dark, very biased and bigoted.  I didn't like it and started questioning certain things.  When I questioned any aspect I was put in my place and called in to the preachers office to be chastised for my questioning of 'the way'.  I used to cry myself to sleep at night for worry and fear of the Cubans and bombs, my folks divorcing, and the social change that was starting to make itself known with the 'hippy generation'!  It was tough times for a little 10 year old to try and grasp any semblance of normalcy from but times they be a changing.

In 1962 a new musician/artist to me...Bob Dylan released a song called "Blowin in the Wind" and a couple years later "Times They are a Changing" that were absolutely revolutionary.  I have never been a big Dylan fan but these songs impacted me at a time in my life where I was ripe for a change.  Dylan was a chronicler of social unrest in the 1960's and just said what most of us were thinking.

What does this have to do with 2017?  Patience my child it takes a minute to put a story into perspective...

Fast forward 5 years.  I am sitting in a church waiting with the rest of the kids from my Sunday school that I had grown up with all my life...waiting to be baptized.  I was pulled from the group and told that I needed to rethink my christian values and that I would be baptized later.  Never happened.  I walked out of that church and never darkened the doorway except once...1975 to get married to my husband Chuck.  Why?  I think because my first marriage ended in divorce after only 2 husband was abusive and I wasn't going to end up like the other women in my family.  I think I thought if I was married in a church it would has but not because of the church.  It was shortly after the second marriage that I realized I wasn't a believer anymore.

At 17 years of age I was sitting at work one night and realized that I didn't believe much of anything that I had been brought up to believe.  I didn't believe in a God if he knew everything and could fix everything why did he let so much of the bad stuff going on happen?  I didn't believe a woman had to marry to be whole and satisfied with her life.  I didn't believe a woman was a punching bag for her philandering husband to punch on.  I didn't believe in much of anything...  Apathy is a good term!

In 1970 I married, divorced, and moved out!  I tuned in, turned on, and dropped out of the society I was brought up in.  I knew I deserved more and better then what I would get if I stayed there...hard to say that now and I wouldn't have been able to back then.  I started to nursing school in 1971 because nurses were making a lot more money then what the average female worker in Oklahoma was...if she could find a job.  I actually was interested in nursing and caring for people so I started working as a psych attendant and was making $1.00/hour in a state institution that paid better then non government jobs.  I know!  Think about that!  I made a whopping grand total of $80.00 before taxes if I worked 80 hours in the two week period.  I think back and wonder at how uncomplicated life was back then.  I got up, went to work, went to school, came home went to bed.  Day in day out!  After my divorce that was what I needed to work out what I was going to do and where I was going to go with my life.

1973 I quit the state hospital job and went to work in a medical hospital as a nurses aide.  I did it primarily because I got a 10 ¢/hr raise but true be told it was because I was beat up by a patient and I was worried about it happening again!  The job I got was really hard work and I began resenting having to do all the work while the RN's sat on their butts and did next to nothing.  I vowed when I got out of nursing school I would be nothing like that and became an advocate for a patient care centered model of care that was called primary care nursing...the RN did it all.  Funny that!

In 1974 I met Chuck at a Halloween party for friends of ours...he was a little creepy in the beginning but after Christmas he began growing on me.  I think the problem was that Chuck was a much nicer guy then any of the other men I had dated and I figured something must be wrong with him!   It was really funny when my friend called me and begged me to go out with him because he had been bugging her and she said he just wouldn't stop!  So my life with Chuck started with a dinner date at his apartment (with another couple chaperoning) and him cooking a most awesome dinner of a souffl—ź and cauliflower with cheese sauce.  The man can cook!!  I still wasn't convinced he was a keeper but I was interested in furthering the relationship.  That night he told me he would like me to stay the night but that if I stayed the night I would be staying the rest of my life!  Oh no!  Exit left.  I was gone.   The next day we went to a hockey match, I went home with him, and we have been together ever since.

1975 was a busy year for me!  I graduated from nursing school and passed my registration tests.  Chuck and I got married in 1975 and immediately got pregnant with our first baby.  That was a surprise because I wasn't sure that I could get pregnant at all after a motorcycle wreck in 1965.  Chad was born in January 1976 and we moved to Kansas City in June of that year.  Life was good in Kansas City and I enjoyed my house and my job there.  Heather was born in 1979 amidst a winter that went on record as one of the worse in KCMO.   We settled in to a life that was hectic and busy as only it can be when you have kids.  It was fun and aggravating at time but it flew past way too quickly.   1982 we moved to Colorado where we lived in Longmont for four years before coming back to Oklahoma where we have lived ever since.  I never subjected my children to the strictures of the church and I raised them as humanists to take responsibility for their actions and to treat others as they would like to be treated.  I am proud to say both Chad and Heather are responsible human beings and caretakers of their worlds and the world around them.

Chad is now married (2008) living in Clarksville, Tennessee where he is band commander WO2 Charles A Doswell IV for the 101st Airborne Band!  Chad and Candice have two beautiful girls(5 and 7) and a darling baby boy(2) and are devout members of the Catholic Church!  Heather married Michael in 2006 and they just recently moved to San Jose, California where Micheal works for Netflix.  Heather has a studio in their home works as an artist and teaches classes occasionally.  They have 3 large dogs(Mocha, Wesley, and Leo), 2 cats(Horace and Inara), and an African Grey Parrot called Nyassa.  

Okay now here is the rest of the story and how it ties into the OMG 2017!  Why my flare up seems to be so bad is due to the stress related to this.

With the outcome of the presidential election last November the world has become a topsy turvy jumble of "I just can't believe it!"   The president, his proposed cabinet, and the followers of the circus are just unbelievable in how they manipulate data/info/ideas around to their way of believing.  The lies and hypocrisy are rampant and I have not felt such a fear of the future as I did back in 1961 when the world was in such a turmoil with the cold war with the USSR, the Bay of Pigs, and the threat of Cuba bombing the US!  The new government is coming in firing people, taking away some peoples rights under the constitution saying the constitution is illegal etc.  It was legal for 250 years and now it isn't?  The new government has all the signs of losing democracy and turning into an oligarchy based on wealth and religion or a fascist regime.  The president elect gave his first press conference yesterday and refused to answer questions from various news reporters saying they were "fake"!  Isn't that a breech of the constitutional freedom of press?  He mocks people and makes some of the most disparaging comment about anyone that doesn't hold his beliefs.  Most of the cabinet of people he is nominating are not qualified for the positions and a lot actually have disqualifiers in their ability to serve in the capacity he has nominated them for.  I am wondering how long it will take for some or all to be impeached.

I am a secular humanist.  I don't believe in any god.  I feel that if there is a god it was a complete asshole to allow all the pain and suffering that it has.   This new government seems to be based on extremist christian principles which focuses only on the almighty dollar and what you should do for god.  Jeff Sessions the nominee for Attorney General said he is “not sure” if a secular person understand the truth as well as a religious person but...We’re going to treat anybody with different views fairly and objectively.  I am fearful that there is a cot in a concentration camp with my name on it.  I am beginning to wonder what the difference between extremist Muslim groups like ISIS and these christians are.  I think if we put them in a bag and shook them up there wouldn't be much difference in bigotry and hate when they came spilling out.

So here we are 8 days away from inauguration and I worry.  I worry about me, my family, my grand babies and a world they will grown up in.  I worry about how we will be able to make it from day to day when they are planning on cutting our social security benefits that we worked so hard and we paid into.  I am worried about the new president elects followers who follow him regardless of how screwed up he is who actually buy into what he says.  It seems impossible that a group of  'christian' people would want to follow his direction with all the lies and indiscretions he perpetrates.  Do you know even after hearing and seeing a video about him she still claims he isn't like all the lies that are going around about him.  His followers are actually more of a concern then he is.   

I worry...a lot.