Friday, June 23, 2017

Neurofatigue

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 ButYouDontLookSick.com   

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 point...it 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! Well...doctor...I don't think so!  

Anyway read the article...it 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 group...kids 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 weeks...my 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 last...it 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.  

Saturday, June 25, 2016

Dysphoric and apathetic….

A couple definitions to begin this post….

Dysphoria:  a profound state of unease or dissatisfaction. In a psychiatric context, dysphoria may accompany depression, anxiety, or agitation.

Apathy:  lack of interest, enthusiasm, or concern.

Or in my simple words…my give a shit attitude.   

I have been in a sort of dysphoric funk for a while now.  I would like to blame it on my falling and breaking my left leg on Christmas Day but I think it even started before that…way before that.  My brain has been on drugs for so many years now I was having issues knowing what was what most days.  I couldn't finish sentences, couldn't think of the words to put together and I think that was part of the reason I quit blogging.  I am not talking about narcotics either…drugs for leg cramps, drugs for fibro, drugs or this or that because another drug caused an issue!  When they started talking about putting me on drugs because another drug caused problems I decided that I was going to get off all my drugs that I could possibility do without.  I was having all sorts of issues…not good ones either.  I know you are probably saying that wasn't such a good idea but for me it was and I did it with medical supervision.  You can read about that in this post here.  I think it was a downhill slide from there to this apathy and dysphoria. I hurt all the time, I don't sleep well, foods don't taste right to me anymore!  I am a whiner!  I don't want to be that person!

I have made a lot of changes in my life since that post and I decided just today that I was going to start using my blogs again for what I intended them for in the first place…to help me organize myself and to help others get their lives organized.  

My life is different since I got myself weaned off Lyrica, Savella, Plaquinil, Requip and others.  I was on the fibro test drug for almost 4 months and started having all sorts of problems.  Blurred vision, weight gain, memory loss, angioedema, loss of appetite except for ice cream…and on and on.  I quit the program around the 2nd week of June and have been flaring ever since.  Drug withdrawal is not good with someone with my diagnoses.  Wish we could get marijuana for medical issues in Oklahoma…it seems to be the only thing that works…but I can't find any illegal either!  

Issues I am going to work on the next couple months include but are not limited to:
  1. I have been hurting a lot more even on the test drug (main reason I quit taking it…no decrease in pain).  I am going to start back on PT after the 4th of July.  It does help.  My gait is unsteady enough I am afraid to do too much walking even with my walker/cane.  That fractured leg wasn't much fun!
  2. My psychological depression, PTSD I am told, has been a problem.  Most of the fibro drugs while not antidepressants have that component in them.  I don't want to be drug dependent.  I have a talk therapist I see weekly helping me work through that.  
  3. My daughter moved to California and she was a big help with my physical and mental well being and it will be difficult to get past that.  I talk/text her most days so it isn't like she has dropped off the face of the earth.
  4. I renewed my nursing license this month…I had decided to let them lapse and became fairly morose over the loss.  They have been a part of me for so long it was like a death in the family…identity loss.  It only took studying and taking CEU's to get them back…that won't happen again. 
  5. I haven't been doing much crafting wise since before Christmas and the fall.  I think I am going to make myself sit at my desk and color in my coloring books and get back in the habit of doing something every day.  It is a great for improving my mood/attitude, helps distract me from the pain and problems.  
I am going to make a couple promises to myself...
I am going to try and be more positive.  Motivate myself to do stuff I like today instead of sitting around whining about not being able to do stuff.  I am going to set limits that are good for me not the rest of the world.  a rebirth…stay tuned!

Sunday, January 17, 2016

how about this piece of info...

Did you know that on Feb. 10, 2015, the Institute of Medicine released a landmark report that contained a series of recommendations for ME/CFS, one of which called for the name to be changed to Systemic Exertion Intolerance Disease (SEID). The name has not yet been formally adopted by world and federal health agencies and I personally think that is because they are still arguing over what ME/CFS is.  In the USA the doctors seem reluctant to embrace the thought that CFS is something more then someone being lazy...

Wiki
def
Chronic fatigue syndrome (CFS) is a complex medical condition, characterized by long-term fatigue and other symptoms. These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities.

def
myalgic encephalomyelitis (ME) means brain and spinal cord inflammation with muscle pain.  
Doctors have argued for years that there is no "itis" with this disorder...no infection present but "most patients develop the syndrome after contracting a cold, flu or other viral illness, but other environmental or toxic exposures may act as triggers. Although no cause has been identified, people with the illness may suffer neurological, hormonal and immunological impairments."

One of the biggest problems with the names is the CDC's definition of CFS/ME from back in the late 1980's.  The criteria identify many patients who are more likely suffering from depression and other conditions that can cause prolonged fatigue and not actually a person with CFS/ME.  In other words they have been labeling us as being psychosomatic...it is all in our heads.  

The SEID diagnostic criteria from the Institute of Medicine ME/CFS Guide include six months of profound and
  • unexplained fatigue  
  • postexertional malaise
  • unrefreshing sleep
  • exhibit cognitive problems 
  • orthostatic intolerance, an inability to stand upright for more than a short period.
I think that it is about time that they are finally starting to believe their patients complaints and concerns and investigating what is going on.  I was devastated when I was diagnosed with FM and ME/CFS because I knew it was a label that would have profound effects on my health care forever more.  Remember that part about a post infectious syndrome or a trigger?  I was bitten by a lyme tick in 1990 on a vacation with my family to an endemic area in South Dakota.  I went through a lot but not all the early "symptoms" of the tick bite!  I didn't have a noticeable rash at any time during my infection...  I was told by my doctor if I didn't have a rash I didn't have it!!!

a list of signs/symptoms (s/s) from the Center of Disease Control (CDC)

Early Signs and Symptoms (3 to 30 days after tick bite)

  • Fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes
  • Erythema migrans (EM) rash:
    • Occurs in approximately 70 to 80 percent of infected persons
    • Begins at the site of a tick bite after a delay of 3 to 30 days (average is about 7 days)
    • Expands gradually over a period of days reaching up to 12 inches or more (30 cm) across
    • May feel warm to the touch but is rarely itchy or painful
    • Sometimes clears as it enlarges, resulting in a target or “bull's-eye” appearance
    • May appear on any area of the body
    • See examples of EM rashes
Later Signs and Symptoms (days to months after tick bite)
  • Severe headaches and neck stiffness
  • Additional EM rashes on other areas of the body
  • Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
  • Facial or Bell's palsy (loss of muscle tone or droop on one or both sides of the face)
  • Intermittent pain in tendons, muscles, joints, and bones
  • Heart palpitations or an irregular heart beat (Lyme carditis)
  • Episodes of dizziness or shortness of breath
  • Inflammation of the brain and spinal cord
  • Nerve pain
  • Shooting pains, numbness, or tingling in the hands or feet
  • Problems with short-term memory
Notes
  • Fever and other general symptoms may occur in the absence of rash.
  • A small bump or redness at the site of a tick bite that occurs immediately and resembles a mosquito bite, is common. This irritation generally goes away in 1-2 days and is not a sign of Lyme disease.
  • A rash with a very similar appearance to EM occurs with Southern Tick-associated Rash Illness (STARI), but is not Lyme disease
  • Ticks can spread other organisms that may cause a different type of rash.
I even with all the early signs of the disease but since there was no rash I told by the doctors that I had some kind of a virus that was going around.  I lived with it cause we all know doctors know best!!
In 1992 after dealing with "issues" for two years I developed heart palpatations, dizziness, shortness of breath, nerve pain issues, the shooting pains, numbness, or tingling in the hands and feet and memory issues.  My doctor told me I had anxiety and depression and put me on drugs...I didn't do well with the drugs and became 'mean'!  I started doing research and demanded tests to be done...which she told me I would have to pay for if nothing showed up...I didn't care I knew something was wrong and it was.  I was positive for Lyme's disease on a blood test but not a strong positive since I had been infected such a long time past.  My doctor still wasn't convinced and ran another test...still low positive so she gave in and gave me the antibiotics needed to treat the disease.  I went to two courses of drugs before I tested negative on a new test...a different test then the first ones we had done...she was convinced I never had the disease...I was convinced I needed a different doctor.   I suffered...yes I have suffered with CFS/ME/SEID all this time...most of the time it was tolerable and I could work and had control of my life except for small relapses. 

Fast forward almost 20 years to the summer of 2010...I had a lot of stressors in my life that year and was working too many hours, not getting enough rest etc and I collapsed at work one night.  I was tested, retested, and tested again and not much of anything showed up on all the lab and xrays they did.  Most significant was verrrrrry low Vit D and Magnesium.  My doctor finally decided I had FM and CFS/ME/SEID and tried to bribe his nurse to come tell me cause being a critical care/emergency dept nurse he knew I wouldn't believe in the diagnosis.  Everyone knows there is no such thing as FM CFS/ME/SEID!  Those people are just drug seeking neurotics....yes my belief at the time...better watch what you believe to be truth cause if it isn't it might just come back and bite you in the end.

I have been on disability since 2011 because of the disorders.  IF you want more information on the past issues I have had you can read previous posts.  I had decided just before Christmas I was going to try and push limits and try to walk more and do more but that hasn't happened and probably won't for a while!  Christmas day I fell and fractured my left knee!  What did I do?  Nothing!  Was was walking out to my car and down I went.  I didn't trip over anything, didn't twist an ankle, step off a curb, nothing.   I went to the emergency room on Christmas day but was told they didn't see a break on xray and was sent home with orders to follow up with an orthopedic doctor.  I did...took two weeks to get in to see his PA and he ordered an MRI.  I wasn't diagnosed with it fractured until 3 weeks after the fact.  I had to go in to get the MRI results a week after the test and it showed multidirectional fractures in the proximal tibia...  What am I suppose to do about this broken knee I have been walking on for 3 weeks...I was told to just keep doing what I have been doing, don't fall, don't exercise, use a walker or a cane...casting and brace won't help right now.  I wonder how they (doctors/PA) would have dealt with it and only be given 15 Percocet to handle the pain!  I feel I have been screwed over by this new healthcare system dictated by the rules and regulations of the big business pharma and insurance companies.  I was told that they couldn't do an MRI at the ER because I didn't show a break on xray and it was a specialists field now!! 

I am flaring with the FM and CFS/ME/SEID and that is what is driving this post.  I have pain in the knee, back, and hips from the fall and then the all over achiness/I don't feel good from the chronic disorders.  Life is a bitch and then some right now.  I need to take down Christmas decorations, clean house for a visitor that is coming from England and all I can think about is where my next cup of coffee is coming from cause I hurt or I am so tired I don't want to get up to go to get it or even go to the toilet.  So there is my story!  I think I will go back to bed and watch some TV...brain rot but my brain is foggy and it is hurting to just finish this post.

more later...

Saturday, January 16, 2016

Happy New Year!

Happy New Year!  Hope everyone had Happy Holiday's and has a game plan laid out for the new year.  I personally don't believe in resolutions because every year that I sat down and wrote something up I failed...  Yep a total failure!  Worthless and useless...  That really doesn't describe me so I decided to quit doing that to myself and making myself feel bad.  I do what I can on an unscheduled basis and I feel better about myself.  Doesn't mean I don't have plans I just don't do resolutions!

My year was rather uneventful last year...for the most part.  Health wise I had ups and downs but don't we all with fibromyalgia, chronic fatigue/Myalgic Encephalomyelitis (FM, CFS/ME), etc.  I had a little more issues with CFS and subsequently a little more apathy.  I think you what I mean... its when you don't feel bad but feel so tired that to just get out of the chair to go lay down is a major issue.  It takes too much effort to do art, too much effort to blog on your page, too much effort to order take out much less cook a meal...  I talked my feelings of inadequacies over with my therapist...love the lady, if you don't have a talk therapist I strongly suggest you get one!..and she asked me if I was trying to be someone else?  Someone who is younger, healthier, and able to do what they want?  Am I setting the bar way too high and every time I try to jump and make the bar do I fail?  Do I beat myself up every time I don't succeed?  YES I DO!  Sometimes it is hard with our disorders to determine what is "normal," what is "abnormal," and when we are just reacting to what the society around us is dictating what they think we should be like.  My talk therapist helps me determine what is me and what is the ubiquitous them!

Back to the issues of this year...  I made several long distance car trips this year going to events and camping with my daughter, her husband, and friends.  I love to travel to see and do new things.  Despite my 'issues' I keep pushing myself to do more!  Sound familiar!  It takes me a good two weeks of down time after a road trip to bounce back and be my 'normal' again.  Was it worth it?  I think so.  I have learned that the pushing is the only way I will ever get anything done anymore but it is tough for me to know when it is a gentle push and when I am really over pushing.  I have had to learn to put limits on what I can and can't do...things that are already limited by my physical disabilities!  One thing I have learned that works for me is frequent short naps, going to bed earlier and getting up later and not apologizing when I do it.  I sleep in the car with feet kicked up and eye mask on when possible.   You do what you have to do!
A picture from one of the trips!  We went to Pennsic Wars in July...read about it here!
Julie, me, and Heather my daughter
We had loads of fun but it was two weeks long and took its toll on all of us not just me.  Julie has lymphoma and like me was in the tent resting frequently.  Why the strange clothing?  Go read the linked post!

I was seen in the ER twice this year!  Not by choice but because my doctor was out of his office and not working at the time.  Both times I encountered this brick wall called FM, CFS/ME that is documented in my chart!  I get so tired of the looks that say, "okay, I know you are here for pain meds!" or the head nodding while you are telling them your issues...of course their thought are off to Aruba or what they are having for lunch not really what it going on with you!  Anyone know the look and attitude.   Okay back to the story!  The first visit was in September...I was have excruciating left flank pain and pain on urinating with blood!!!  I went in and after all the BS above was take care of and labs came back they were very solicitous and told me that they thought I had passed a kidney stone and it caused an infection....OKAY asshats!  Score one for me!  sorry but it feels good for something to show up and not have a single thing in lab or CT that proves anything wait...
Does that make me mentally ill to be happy I had proof I had something physically wrong with me?

The second visit was on Christmas day and I fell hurting my left knee.  Talk about pain!  I woke up really happy and feeling pretty good because my son and his family was in town with their children for the first time in six years.  They are military and get about a lot and with young children it is just a problem to travel anyway...  They were staying at my daughters house and we were leaving to go there when I fell and hurt my left knee...well you know Grandma can't disappoint the grand babies so we went on and watched them open gifts, ate breakfast etc and my knee kept hurting and swelling so my daughter hauled me off to the ER.  We actually got to the back to the exam rooms fairly quickly, got the Xray done and was told it was just a soft tissue issue...poet...and they didn't see any broken bones but I should follow up with a orthopedic doctor to make sure. 

Fast forward 2 weeks...yes two whole weeks before I could get in to see an orthopedic doctor...but I was actually seen by his PA Mike not the doctor!  Anyway 2 weeks later I am seen by Mike who tells me he has looked at the xray but seeing the swelling in my knee that I should probably have an MRI to make sure it was just a soft tissue issue...I like the rhyme!  I got in to the MRI about 2 hours later but had to wait another week to go back to the office to get the results.  Okay refresher  December 25 fell, January 7 office visit and MRI, January 14 back to the office to get results... seems really wrong some how to me to let an old lady sit in pain with a horribly swollen knee and leg.  I have to hobble around on a walker or a cane and still have loads of issues with balance.  I digress again...FM with foggy brain and random thought patterns.  ANYWAY!  I have a broken knee...not just fractured in one place but multiple fractures going different directions!  Great news after walking around on it 21 days!  Mike was very apologetic and told me that he wished they had known sooner but that there wasn't much they could do about it now.  I must have looked really pissy cause he started asking me what I was doing for pain, walking etc and gave me a few more hints of things I could do!  I am to make an appointment for 5 weeks and go back and also make an appointment with a bone clinic specialist to find out why a short distance fall broke the bone.

I also had an appointment with the rheumatologist/FM doctor this week.  No lab work, no xrays, no nothing.  Told me to keep doing what I am doing and come back in a year.  WAIT!  Does this mean I am no longer disabled?  no longer need a doctor?  WHAT the hell does this mean?  I actually asked her that I was so po'd about doctors and visits etc at this point.  No viable response.

I am still participating in the drug trial for the FM drug.  I don't think I am on any drug because I am not feeling any different fibro pain wise.  If I am on the drug then it is at a lower dose and not enough to affect my pain levels but I think it is effecting my sleep.  The first screen capture is from my FitBit sleep record before I started the study.  It shows how much I am sleeping and how well I am sleeping.  As you can see 9 hours in bed netted me 6 hr and 21 minutes of sleep.

This one is one take from yesterday and it shows I am sleeping a lot better.  Now I have to weigh in that I did take some ibuprofen prior to going to bed.  Another thing I have found is the later that I go to bed the better I seem to sleep in the long run! 
I wear a FitBit Flex and I can monitor how many steps I walk a day and how well I sleep etc.  There are more expensive ones out there that tell time, keep track of your heart rate, blood pressure etc.  I just want the basic they others take learning to operate. 

Well I think that this is enough for one post...maybe a little more then enough but I had to get caught up!  Have a great month!