Wednesday, November 25, 2015

Life Changes...

I thought I would touch base and write a blog post about what is going on in my life recently!  I am sorry it has take so long but my life tends to be rather the same day to day and I don't have much to report. 

One thing I do have to report is a fibromyalgia research study being done on a new drug and that I am participating in the study. The company is IPS Research located in OKC, OK but there are branches all over the states where they are conducting different types of research.   I have gone to the clinic for 3 weeks now and was issued the drugs just yesterday.  I have taken only taken 3 doses so far and since it is a double blind study I have no idea what I am taking.  I don't think I will notice any changes or anything for at least 2-3 weeks if I am taking the drug instead of the placebo.

Why did I decide to do this study?  A friend knows what I have been going through with the fibromyalgia and chronic fatigue and she saw an ad saying they needed people to participate in the study and thought of me.  When I contacted the clinic they were so nice and so professional I though what the heck did I have to lose.  Those of you who have followed me know that over the past year I have just about quit all the medications I have been on for years because I didn't think they were working for me...If you take a drug to help with pain and it doesn't work why take it. 

I was on two fibro drugs and I still hurt so bad and was so depressed that it didn't make sense to me to continue taking the Savella and Lyrica.  Good drugs but they are expensive and they just didn't do what I was led to believe they would do...they work for some but not at all for me.  I also was on Requip for my leg spasms for over 5 years and still had spasms even with upping the dose etc and the only thing I noticed was an increase in my obsessive compulsiveness!  I was also on an antidepressant called Effexor because of my depression issues and all I can say is it is a nasty drug!  I weaned off the Savella, Lyrica, and Requip over a 3 week period and had no problems but the Effexor just didn't want to let me go.  It took several months and several lowering of the dosage to finally quit it.  My cost each month taking these drugs was just over $200...Like I said why take the stuff it doesn't work?

I have had pain for so long it has become part of my lifestyle...little pain in the upper back and shoulders today...think I will vacuum or mop the kitchen floor.  No problems standing I do dusting and cooking.  Laundry really seems to bother me no matter what day it is.  I am sure a lot of you reading understand my motives and methods.  The gist of it is you do what you can with what you have.  Hard part is learning to live with pain and the loss of who and what you were before the pain and problems came.  I have an awesome doctor and when he told me that my old life was gone forever because of the fibro and chronic fatigue I cried...still do.  I developed an attitude over the past 6 months that consists of living with what I have been dealt and working with what I have got.  So old girl the time has come to drop your old live and build a new one.  I wasn't ready to let it go but it is gone and I am rebuilding a different life. 

The only constant in this life is the pain and tiredness I experience every day!  I am hoping that trialing this drug it might help others that are like me.  I know that in this type of study I stand a good chance of not getting a drug at all but just a placebo/sugar pill.  The way it is broken down is
  • 25% will get a Placebo
  • 25% will get 75 mg Lyrica
  • 25% with get 15% of the experimental drug 
  • 25% will get 30 mg of the drug.  
My attitude is it is all for research and I am willing to help if the drug turns out to be a life saver for other people.  If I happen to get Lyrica or the Placebo nothing will happen.  If I get the drug maybe it will work for me...who knows!  Wish me luck

Sunday, August 30, 2015

ER Visit

Well I did something last week that I had promised myself I wouldn't do again!  I went to the Emergency Room at Norman Regional Hospital!  I didn't have a very good experience at the ED the last time I went there.  I checked in with complaints of chest pain and vertigo and was treated to a seat in the waiting room sitting by a man barfing his guts up in a plastic bag!!!  Sorry but the visual is still stuck in my head! 

On Thursday I woke up with a horrible headache, side, back and flank pain, blood in my urine, nausea etc etc etc!  I was miserable to say the least.  I rather suspected that I had a kidney infection but had been putting off calling the doctor and I guess it progressed to the point my body wasn't laying still for it any longer!  I called my doctors office and he was off for the day and his nurse practioner was booked up!  If I needed to be seen immediately I should go to the ER.  So I did with dread in my heart! This time I was shown to the back and the minor care part of the ED and was seen rather quickly by an old nurse friend Pam, and Dr. R. Williams.  I got the fun of an IV, lab work, and a trip to the cat scanner but all in all it turns out that I had a fairly advanced UTI and maybe had passed a kidney stone.  YUK!  Not much fun...actually a real pain!

I think the reason I was so resistant to going to the emergency room is the stigma having my list of diagnoses brings with it.  I was sitting in the chair thinking about what I should tell the intake nurse involving my history of pass illnesses and thought...definitely not Fibro!  Well hell she already had it documented in my past visit history!!!  I hate the stigma that goes with that diagnosis!  Heather tells me to just believe in it myself and quit apologizing for having it...I didn't ask for it it found me!!!  I have been fighting with this crap since 2011 and you would think I would pull up my big girl pants and just live with it but it is difficult.  What crap have I been fighting?  Well lets see...
  1. Fibromyalgia
  2. Chronic Fatigue
  3. Post infectious disease syndrome...I have had lymes disease and RMSF!
  4. Irritable Bowel Syndrome(IBS)
  5. Restless Leg Syndrome (RLS) 
  6. Hypothyroid disease
  7. Hypotensive issues
  8. Celiac or gluten intolerance
  9. Psoriasis
  10. Roscea
  11. Raynaud's Syndrome
  12. Sjogrens's Syndrome
  13. mild Rheumatoid Arthritis (RA)
  14. face and skin cancer
For years I had been told that I had various other issues but this list is what I function from at this point in my life.  When you look at it the overwhelming issue is autoimmune disorders.  What did I do wrong in my life to be blessed with this crap!  I don't know!  I think that the lymes disease may have been an instigating issue in all this because I didn't have anything by the thyroid issues until then. 

What drugs do I take now?  Very little, as little as I can get by on.  If I don't think they are doing anything for me I have been taking them and trying them out for 4-6 months then weaning off if I don't think there has been any difference.  I am currently on...
  1. Synthyroid 0.15mg daily
  2. Plaquinal 200mg twice daily
  3. Prilosec 40 mg daily
  4. Multivitamin (MVI)
  5. Fish oil
  6. magnesium
  7. calcium
  8. cranberry capsules
  9. Vit C
  10. Vit D
  11. Occasionally I will have to take a pain pill or muscle relaxer but they don't do much good for me.  I seem to do better with just Ibuprofen or ASA
I have tried a number of other drugs but they just don't work for me and made me feel worse then what I do off of them.  Examples:
  1. Requip, ropinerole made me obsessive compulsive and I still had leg cramps taking 4 pills a day.  That Rx was over $800 before insurance brought it down to $65 for me.
  2. Lyrica...made me so depressed that I didn't care if I hurt or not I didn't care if I lived or not and at one point wouldn't have prevented something from killing me had I been given a moving out of a car's way or being run over.
  3. Savella worked in the beginning but then making my heart race and I was feverish all the time.  I had episodes of tachycardia and frequent PVC's so I weaned off it as quick as I could and it still took me almost 6 months to get off of it.  
That's just a few I quit taking after they quit working or I didn't see them doing anything for me.   The cost each month for those 3 drugs was running over $200 and I just could see paying it out for something that wasn't working for me.

I take a MVI cause I have always felt like people should take one to cover for the deficiencies in their diets.  I listened to a tape of the positives of Fish Oil and I take that for that reason.  I don't know that I can tell any difference from it or the MVI but hey I believe in prevention!  The Vit D and Magnesium were Rx for awhile because neither vitamin/mineral was at levels they should have been and I have been told I will have to take them the rest of my life.   The Vit C I take because Linus Pauling showed us back in the 1970's that it has a lot to do with the immune system.  I figure all the research he did taking it wouldn't hurt me and it might actually do some good!

The gist of this post is to tell you I am okay and so are you if you are blessed with any of the above diagnoses.  I apologize regularly to myself and to the patients I cared for in the past that I wish I had paid more attention to them and what they were telling me was the matter with them.  Yes there is a stigma to Fibromyalgia and Chronic Fatigue Syndrome and many other disorders like them.  I wish there was a lab test or x-ray that could point positively at what we have but right now there isn't one.  I am looking at it from the perspective of being an explorer and traveling uncharted paths so others can have an easier trip.  When someone tells me that they don't believe in my disorders I am going to tell them "too bad...I wouldn't wish it on you to show you it exists cause it hurts too bad!"

Gentle hugs dear readers... 

Cranberry Orange Scones...Starbucks! 

WOW!  Isn't it funny how your mind can jump around all on its own!  Does your mind do that?  Mine does.  I was sitting here thinking I wish I could still eat gluten cause I would go to Starbucks and get a latte and a cranberry orange scone! (I haven't eat gluten in almost 3 years!)  Yum Yum!  I love them but since I can't have gluten to cheat and eat one means I will have several days of issues because of it and I just don't find it worth the effort most days. I decided to do some surfing and see what the internet could offer up!

I found quite a few different scone recipes and settled on this one from The Healthy Maven!
While it is not quite the same as the one at Starbucks it was tasty and filled the need for the scone.

Gluten Free Cranberry Orange Scones

  • 1 3/4 cups gluten-free flour + ¼ more for sprinkling*
  • 1/4 cup coconut palm sugar
  • 2 tsp baking powder
  • zest from 1 orange
  • 1/2 tsp salt
  • 1/4 cup cold butter, cubed
  • 1/4 cup cold 0% fat greek yogurt
  • 2 large eggs
  • 1/4 cup orange juice
  • 1 tsp vanilla extract
  • 1/2 cup dried cranberries (unsweetened preferred)
  • Optional: 1/3 cup white chocolate chips, melted-for glaze**
  1. Preheat oven to 400 degrees F.
  2. In a large bowl combine 1 3/4 cup gluten-free flour, coconut palm sugar, baking powder, orange zest and salt.
  3. Add in cubed butter and greek yogurt and either using a pastry cutter or your hands (get in there!) combine butter and yogurt with flour mixture until crumbly texture is reached. Should have the consistency of small peas.
  4. In a separate bowl combine eggs, orange juice and vanilla extract.
  5. Add wet ingredients to dry until combined.
  6. Stir in dried cranberries.
  7. Shape dough into a ball and drop onto a lightly floured surface. Add more flour to top of ball and additional flour underneath if sticking.
  8. Roll out dough into a large circle that is 1 inch thick. Dough is a bit tricky to work with but have patience. Add additional flour if still really sticky.
  9. Cut into quarters and then cut quarters in half to make 8 scones. If they lose shape, just re-shape with hands.
  10. Place scones on a parchment or silicone lined baking sheet and bake for 15-20 minutes (mine took 17).
  11. Let cool completely if icing with white chocolate or serve warm.

This picture is of the scones I made...yes there are a few gone but OMG!  They were so good hot that I couldn't settle for just one!  I ate two and Chuck was tougher then me he settled for just one!
Now the scones she made look really yummy but I didn't have the white chocolate to drizzle over the top of mine so I just used a simple glaze.  A trick I use to make GF biscuits or scones is I roll them out on waxed paper and just slide them over on to the baking sheet paper and all.  GF breads are really sticky and this saves the headache of trying to work with sticky dough and a lot of times adding more flour only makes the end product dry and tough!
 Give them a try...they are worth it!

Tuesday, August 18, 2015

HCF product recommendation

I was asked a couple months back to try a product called HCF, Happy Calm Focus.  I was a little skeptical because the person from the company that manufactures the supplement tracked me down from a posting on this blog.  If you read yesterdays posting I haven't posted in quite a few months so I figured they were just fishing but I agreed to try HCF.  
HCF Happy Calm Focused Brain Supplement - Amino Acids, Vitamins and Minerals for Memory, Attention, Focus, Mood, Concentration, Sleep, Weight Loss, Energy, Confidence and Hormone Balance
This is my product review I posted on  
  • on August 18, 2015
    I just got home from an extended stressful trip of 3 weeks and I don't know if this would be a good recommendation for your product. I will let you decide. I filled my med box with the HCF and started it the week before I left and forgot I was taking a new supplement until I got home. For some reason I thought I should only be taking 2 a day and just put one pill in the am and one in the pm and now that I have read the directions again I will start taking the 3rd at lunch. I have multiple autoimmune disorders and I was very skeptical that the HCF would do anything for me and my brain fog issues. I discussed it with my doctor and she told me to give it a try...who knows it just might work. One thing I can tell a you about is a notable difference in my recovery from the brain fog in the mornings. I usually take 3 hours and as many cups of coffee to be up and running each day but during the course of my trip I was up and running with the other travelers and seemed to be able to interact and function better. Physically I was stressed from so much walking and doing that I was tired a lot and due to my disorders not much will help that but rest. I am sleeping better I think. I don't remember getting up during the nights on the trip at all. Talking with my daughter she says that she noticed I was a little grumpy the first week or so but that maybe due to my getting off the other medication my doctor had taken me off of who knows. I began feeling a little less apathetic and wanted to do more and stretch my limits so to speak. I began playing games online again that are suppose to help increase your mental abilities and I had quit them because I would get so frustrated with not being able to remember this or that. I hope this helps someone to decide whether or not to try the product because I was really surprised at the results I have received after only taking it for a month!
 Now anyone that knows me very well knows I don't easily accept changes.  I had been taking a supplement my doctor Pam Wilson D.O. recommended for my brain fog and well being.  I couldn't tell that it was helping much was worth a try.  I ran out of the supplement just before our trip to Pennsic Wars and decided to replace it with the HCF.  I won't be going back to the Wellness drug but will order this as the results are noticeable and the price is just about the same.  

What makes it work...I don't know I am not a biochemist but I know it is working for me.  It isn't earth shattering results after a month but I am noticing a difference.  Here is the information label...

HCF label
This is a little difficult to read so you might need to go to the site linked above to check it out!  

Have a great week and I will continue to blog as my muse strikes!

Sunday, August 16, 2015

up for discussion....Warning rather harsh and crude language and attitude is in this post. Click the red X if...

These are the VIP's in my life.  They matter and their opinions matter. 
It has been over 6 months since I last posted and I quit posting for multiple reasons.  I apologize in advance for my language and attitude but you know this is my blog and if it offends you then you can click the frigging little red X at the upper corner and it will go away!

Like I said (before the attitude hit) I quit posting on this blog for a multiple number of reasons.  I had been having a particularly bad patch of it around the holidays and went to have coffee with friends and we were talking about various aches, pains, hardships, and realities when...
    1. A friend (aka Her from here on) told me that everyone knows I am sick and just about no one wants to hear about it anymore!  That just by looking at me I was playing up how bad my situation and illness is.   What really irritated me about it was she did air brackets..."sick" around the word sick when she said it....really folks I am surprised she is still alive.  Her made comments that I have made to myself numbers of times about why don't I look sicker?  I mean it took me 2 hours not 10 minutes to get out of bed, shower and get dressed to go to this thing.  My brain hadn't totally awakened yet and I was still in a fog and I was speechless for a few minutes.  Nope that person isn't a friend any longer and I could really give a shit about Her opinion anymore but....what if other people felt the same way? What if they were too polite to say anything like Her did?  Was I boring them to tears, squandering their precious time like she had said?  
    2. I felt really guilty about the remarks I made to her when my fog disspated and I could form a coherent sentence that didn't include the term "fuck you who do you think you are?"  I wondered if I over reacted when she told me that she was only thinking about me and why people didn't want to hang around with me anymore.  I don't feel that way now but I did then.  Her said that it wasn't like I had cancer or anything like that and "I wasn't going to die from it was I."   I really don't know if what I have is going to kill me or not...some days I wonder when my pain gets so bad I have trouble reaching around to wipe my own butt!  Excruciating pain that is like electrical shocks that fly up and down my spine.  I asked Her did she want to come help me wipe my butt on those days to see how bad it is?  Her reacted to me by saying, "see these are the kind of remarks I am talking about!" Guess I don't get any help from Her!
    3. One of the biggest reasons is once out of the habit of blogging it becomes a burden to get back into the habit for me.  And once again I wonder if people really want to hear about my aches and pains, trials and tribulations, how I get by one day at a time.  Does it do anyone any good to read about it when they all have problems of their own. 
    4. I talk to my therapist a lot about my problems both physical and mentally.  Debbie encourages me to think things through and doesn't tell me the right or wrongs of something I say or do... Debbie's take on it was "how do you feel about it?"  So after much thought and deliberation I think I am going to start blogging again about me, recipes I tried, the drugs I have taken, lab work results etc etc etc.  I know some people might not like to read about me but if it is an issue with anyone then I guess Her would like a new friend!
So those are the reasons...some of them. As Arnold says...I'm Back and I will be trying to remember to blog once a week!  If you made it to here I want to say thanks for reading this and I promise to do something better next post. 

Saturday, December 6, 2014

Obesity and Autoimmune issues

I always joke I am not fat I am fluffy but the truth of the matter is I am obese!  I am trying to eat and live more healthy now days but the truth of the matter is this excess weight is causing me all sorts of worries and issues recently.   Being a few pounds overweight isn't a big problem but when you reach the point where I am it is a matter of trading quality years of life for that extra piece of chocolate.   Recently Chuck and I started on a journey to institute a lifestyle change after receiving some disconcerting news from our doctor that our health was being impacted by too many unhealthy lifestyle practices.  I am cooking lower fat, lower carb, and more health proteins in hopes to get some of the weight off and improve our health.   Chuck has started and exercise program and I do what I can with all my disorders. 

What is obesity?  Obesity as defined by Wikipedia, "Obesity is a medical condition in which excess body fat has accumulated to the extent that it may have a negative effect on health, leading to reduced life expectancy and/or increased health problems.[1][2] In Western countries, people are considered obese when their body mass index (BMI),[3] a measurement obtained by dividing a person's weight by the square of the person's height, exceeds 30 kg/m2, with the range 25-30 kg/m2 defined as overweight."  (I left the links in so you can go read it)

I decided to investigate this BMI thing further and Googled a BMI calculator and set to work to see what my BMI was...NOT good of course!  I am 5'3" tall and weigh about 209#.  My BMI was 37.02 (Chuck's was 33.3.)  On the BMI calculator site they said my BMI is between 35-39.99 (obese Class 2) and I am at higher risk for weight related health problems and even death.  Now my first inclination was to blow them off but kept on doing a little more research.

On the site this week they had an article "Does Obesity Play a Major Role in Triggering Autoimmune Diseases?" by researchers TelAviv University citing some research done on obesity and autoimmune disorders.  In the article it tells us "obesity erodes the body's ability to protect itself, triggering a pro-inflammatory environment that promotes the development of autoimmune diseases, hastens their progression, and impairs their treatment."  So years and years of unhealthy weight is taking its toll.  Immune related conditions they talked about included rheumatoid arthritis, multiple sclerosis, type-1 diabetes, psoriasis, inflammatory bowel disease, psoriatic arthritis, and Hashimoto thyroiditis just to name a few.

Now comes investigation into autoimmune.  What is autoimmune?  Medline Plus a service of the National Institutes of Health  that it is the body's immune system attacking an destroying healthy tissue by mistake.  The article says that there are more than 80 identified autoimmune disorders.   
The article sites the most common autoimmune disorders are:
(I left the links intact)
That's the short list and I suspect new ones will be found as time progresses. 

Symptoms are vague and include fatigue, fever, malaise, joint pain, rashes to name a few.  Autoimmune disorders are chronic and not curable but treatment of symptoms, reduction in symptoms, and helping the body to fight off what it happening to it....

Okay...I am at an ah ha! moment here.  It is hard to change a lifestyle over night that brought on all my problems.  I am believing the hype on obesity and autoimmune disorders because I currently am the proud owner of several autoimmune disorders that don't seem to react to any medications favorably so I am trying to treat my whole system in hopes of slowing it down.  I am 62 years old and I would like to be here to see my new grandson graduate from high school in the future.  I will plan on blogging each week my journey to a healthier me again.  Follow along and/or join me on learning to eat and exercise.  I also joined The Fresh20 to help with the menu and nutrition. 

Tuesday, November 18, 2014

Winter...some thoughts

A week ago Monday it was 82 deg here in Norman.  Beautiful sun shiny day and my fibro and other health issues were on hold! It was nice to go outside and sit with a cup of coffee and relax.  We had had a fairly cold night a couple days before and were touched by a little frost so the garden plants were looking a bit worse for wear but it was still a beautiful day! 

That was it for beautiful 80 degree days for this year.  That night a system moved in that dropped temperatures down into the 20+ range at night and it doesn't get much over freezing during the day.  I kept on keeping on rushing around with my daughter and husband during the week and I started noticing I wasn't sleeping well again, hurt all over and sat with my muscles all tensed up all the time.  I finally had to call uncle on Friday and told everyone I was staying home in the warm as much as I could.  It was just too damn cold for me to be out and about and I couldn't seem to get warm no matter how many layers of clothes I put on and when I did it was almost a feverish warm.  I put the flannel sheets on the bed along with the electric blanket and comforter! I found my tennis shoes and socks and started wearing turtle necks and sweat shirts.  Anything to get warm. 

And it just keeps getting better and better!  It snowed Sunday...about 1-1 1/2" and was in the low teens temperature wise.  I am 62 years old and I can remember running around in shorts at Christmas but I can't remember ever having snow in November or it being so cold.  People laugh at global weather changes and I am sure my husband would say this isn't part of it but just one of the 100 year things but...I am miserable none the less. 

So you are asking me what does this have to do with a Fibromyalgia CFS blog.  Well dear reader it is simple.  Weather affects everything I am and do now days.  I keep trying to get Chuck to get together a research group to go for a grant from the Howard Hughes Medical Foundation and research why weather affects me and people like me.  There has been some done but it is so subjective...(ya think so)!  Weather affects everyone so differently that there is no control group that they can base it on.  What I think is miserable hot or cold is different to you.  It is a problem with no solution I can see so I guess what we have to do is take care of what is the issue. 

Right now my issue is sitting here typing on the computer my hands and feet are like icicles!  Check it out!  My computer tells me it is 54 degrees outside right now, the thermostat just outside the door to my room says the heat is running and the thermometer says it is 70 degrees but I am cold!  I have on sweat pants, sweatshirt, heavy socks and a lap blanket on but I am cold!  My fingers and toes are the culprit I am sure!  My fingers and toes hurt and feel swollen but they aren't and my ears and nose are just about as bad.   If I get those four body parts warm then I feel warm all over.  What's up with this?  It is so frustrating and in turn it makes me run to the computer and start surfing the web to investigate what might be causing it!  I have told my doctor and he is clueless but is sympathetic like other health care providers you go to see (like in the ER)with a diagnosis of Fibro or ME/CFS you don't get a great response from them because they are convinced you are just there seeking pain meds or worse yet that you are crazy!

I read an article and posted it a few months ago on the Solve ME/CFS Initiative (used to be called the CFIDS Association) website about some research being done showing that the autonomic nervous system in people with CFS/ME and Fibromyalgia is compromised and we are unable to maintain body system regulation at normal levels.   The autonomic nervous system (ANS) controls just about all our body systems automatically and when that goes awry there are problems.   Another article that the Solve ME/FMS reported on was some research done on orthostatic intolerance (OI) done by big league university researchers showing that people with Fibromyalgia and ME/CFS have a problem with ANS control.  There is no miracle drug to cure the disorder nor is there a specific treatment for OI...we just treat the symptoms and OI can ANS dysfunction can affect every system in your body. 

My family have several members plagued with a disorder called Raynaud's Syndrome.'s health page has an interesting article about Raynaud's syndrome/phenomenon and how it is an overlapping disorder in people with Fibromyalgia and CFS.  "Raynaud's syndrome is a condition in which the blood vessels constrict, causing inadequate blood flow. That leads to frequent cold in your extremities and makes it hard to warm them up. The most commonly affected body parts are the fingers and toes. But your lips, nose, ear lobes, knees and nipples may also be involved."  Wonder if Raynaud's is an ANS dysfunction?  According to several sources it is highly likely that is the issue. hmmm....I think I may be getting to a solution to what ails me!  Once again medications don't do a lot for this disorder and symptom treatment seems to be the solution! 

I keep looking up and reading about different things and it worries me sometimes that I might be assimilating issues like the Borg out of Star Trek!  If it goes with Fibromyalgia and CFS then I seem to have it in one form or another.  I hate it when I doubt myself cause it seems I am the only one who really believes that what is wrong with me is a real problem.  When my memory is so faulty and I am confused as to what is REALLY going on with me!  What do you do to 'keep the faith'?  It's hard when the disorder has no lab or radiological tests to prove what you are feeling and going through is anything more then just in your head.