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.

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 negative...doctor 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 subjugation...you 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

TODAY'S NUDGE
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.