Sunday, December 18, 2011


Well last year I was so depressed that I played Scrooge and didn't do any decorating or buy a single Christmas gift. I didn't have money because of no job or money coming in and I just didn't feel like getting out and fighting the crowds.

This year I am still broke but I have made some psychological changes in my life. I still hurt all the time but I am learning to manage it. Yesterday I over did it quite a bit because I worked diligently most of the day putting lights on a bush in the front yard and putting out the air Snowman and tree in the front yard. I also spray painted 3 graduating sized grapevine wreathes to make Snowman hanging for the front door. I think it will be cute when I get it done...and relatively inexpensive. I used to be able to do so much more then spending a day on so little but I was happy with what I accomplished yesterday. It is all in the perspective isn't it!

I also am giving some Christmas gifts this year but they are gifts that I made with my own two hands. The grand babies are getting store bought toys but my children and their spouses will be getting a home made gift and a little check because I STILL can't handle shopping or being out in crowds. I become very agitated and my body starts to ache and hurt all over then I get headaches and my muscles stiffen up and I am done for the day...Not worth it for me. If anyone has a complaint then I guess next year I will go back to nothing for Christmas except a lump of coal that I can order online!

I love the holidays...always have. I love the memories of my childhood, the memories of what we did with our children. I hear from my children now that it wasn't the toys and gifts that they remember now but the times we made cookies and sang Christmas songs and did things as a family.

I am not stressing about Christmas cause I want to enjoy the holiday and conserving myself is the way to make it happen. I am glad in someways that this disorder has forced me to review my priorities and make what is really important the most important thing in the holiday...My family!

Hope everyone reading this post has a very Happy Holiday and/or a very Merry Christmas!

Wednesday, December 14, 2011

Interesting read!

I received an email today from Blain Skrainka at Everyday Health asking me to share this link. I read the article and was surprised to read that these are strange and unusual symptoms of FM. I have them all. How about you are you blessed with these symptoms?

1. sensitivity to touch-there are days I can't stand anyone/thing to touch me and I constantly fight tight clothes, underwear, and shoes now days.
2. stimulation overload to smells, light, noise-one of the best things the doctor did was to start me on Requip of my leg spasms cause it also helped tone down my reaction to perfumes and light sensitivity.
3. fibrofog
4. tingling or numbness-legs, hands, feet, arms, random spots on my body!!
5. lipomas-got a big one on my r arm and another on my abdomen...
6. sweating-doctor started me back on estrogen cause we thought it was due to hormones but at 60 I don't really think so especially since it didn't stop the night sweats! Sometimes I flush for no reason too and I think that is caused by the same issue.

Click the link and read the article. Interesting read!!


Fibromyalgia affects millions of Americans, from pain and exhaustion to other lesser-known symptoms. Everyday Health encourages you to share this content piece with your readers. If you are able to make a post or provide a link to your readers, we would love to give you a Twitter Follow Friday shout out!

6 Strange Signs of Fibromyalgia

Happy Holidays,

Blaine Skrainka
Outreach Director
Everyday Health
345 Hudson Street, 16th Floor
New York, New York 10014

Don't believe everything you hear!! I am not dead!


I just haven't blogged in a long time because:
1. I took a couple of trips
1. to see my new granddaughter when she was born and 2. to Spain to sit in the sun and relax and chill out. With the onset of this cold weather I am wishing I was back in Spain in a major way!

I think I just got out of the habit of blogging!

Let me tell you about my travels with the Fibromyalgia and the ME/CFS. It wasn't bad!!
I was really anxious about both trips. The trip to Virginia Beach, Virginia is a 1400 mile, two day trip that frightened me more then the 12 hour flight to Spain. It wasn't bad because I really prepared myself both mentally and physically for the trips.
I made sure I got up and moved around and if the sitting was an issue I stopped and got out of the car and walked around or on the plane made a circuit of the seats. I drank a lot of water and kept hydrated. When I was tired I just stopped and slept. In the car, on the plane, in the hotels etc. I don't like pain pills cause I already have fibrofog and they just exacerbate the issue but these trips I made sure I took them at least every 6 hours when needed them for the arthritic and other pains. They don't really work well with the FM or ME/CFS pain but the Savella is contraindicated with a lot of non-narcotic pain meds because of increasing serotonin levels. Not a fun thing to do from what I have read. Another thing I did was take sleeping pills with me! Not a thing that I am happy with but everyone knows that sleep deprivation only exacerbates the disorders so I went prepared. A Spain I found a 4 ounce glass of red wine helped me sleep better then a sleeping pill. I also pushed myself and did a little more walking. I still had problems with the numbness in my toes and cold tingles in my legs but I did fine.

I guess what I am saying I didn't push myself too hard and I embraced the fact that I can't do things like I used to and did what I could. Everyone we were visiting knows I have the disorders and respects the fact that I can't do as I once did and didn't try to push the issue.

Don't give up on things you love to do, and I love to travel, just modify how you do them. There is no way I would take off on my own like I used to do because of the stress I get and the fear of getting lost because of the fibrofog but I can still go and do. Give it a try. I had a blast!

Monday, September 5, 2011

NPR broadcast

I just read/listened to a couple of broadcasts on NPR regarding CFS/ME. I used to believe it was a make believe disorder too until I was diagnosed with the disorder along with the FM. There is a link to the broadcast or you can read the transcript of both programs. The first program broadcast was The second program is

I am at my son Chad's house right now for the birth of our second granddaughter, Hannah. It has been a big fear of mine regarding travel and how it will affect me with the disorders. I have been pushing myself and I am feeling really tired and having some pain but I am glad that I gave it a try! Not at all as bad as I thought it would be but still very tiring!

I think, as one of the NPR broadcasts say, you have to push yourself a little otherwise you end up 'deconditioning yourself or as I say 'invalid-izing' yourself. I think the more you think about how you hurt and can't do this or that the more your body gets to thinking that way too! Check out these programs...they are short but interesting.

Thursday, August 4, 2011

How is FM Population Determined?

Just read an article on the FM blog site called, "How is FM Population Determined?" I found it interesting that depending on where and when the sampling is done you can have such a large difference in numbers.

In a post I received today from the National FibroMyalgia and Chronic Pain Association(NFMCPA) I was amazed again at how low a percentage of people have FM world wide but we are one of the most discriminated group of people in the medical field of care. It all goes back to there not being a group of tests or lab that can support the symptoms and reasons for them. Here is a copy of the post.

What is Fibromyalgia?
Last Updated on Wednesday, 03 August 2011 02:30

Around the world, fibromyalgia (FM) affects approximately three (3) percent of the population. Characterized by widespread chronic pain, tender points, sleep abnormalities, morning stiffness, fatigue, diffuse tenderness, those with FM often have overlapping conditions such as TMJ, IBS, migraine headaches, and neck pain. Managed by the central nervous system, these signs and symptoms cause the "fight-flight-or freeze" of the autonomic nervous system to remain active. Amplification of sensory input occurs--a heightened sensitivity to sound, light, pain, and touch.

Does it hurt to stub a toe more to a person with FM than when a person without FM stubs his toe? The answer is unequivocally "yes." In research both positron emission tomography (PET) and functional magnetic resonance imaging (fMRI) clearly show the increase of cerebral activation (painful experience) to a person with FM during the application of painful stimuli when compared to the same painful stimuli to a control subject. This generalized increase in pain sensitivity could be attributed to altered central pain processing.

Wednesday, July 27, 2011

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

I just read and article on about CFS/ME e-published ahead of print in the Journal of Internal Medicine called “Myalgic Encephalomyelitis: International Consensus Criteria.” The article is written by a group researchers from 13 countries to define CFS/ME. It is all in a name! I think that they hit the nail on the head when they said that Myalgic Encephalomyelitis gives more credibility to the disorder! For years it CFS has been another dumping ground for patients that less scrupulous doctors have dropped their patients into rather then looking more closely at what is going on. I can't really point fingers though cause we didn't know much about Fibromyalgia or Chronic Fatigue Syndrome except there seemed to be a lot of people being diagnosed with it that seemed to want a lot of drugs and were very needy in health care in many ways. I am just as guilty as others in grouping these people into the 'crock' or 'drug seeking' group and I have more than a little remorse now that I too am diagnosed with the disorders.

I am glad that there is a panel of world renown researchers and physician's that have gotten together to investigate the disorder and provide consistent criteria for diagnosing the disorder. It will help isolate the actual patient with the disorder from some those with other disorder. The abstract states, "The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology."

Read the article. Its worth it!

Sunday, July 24, 2011


Talk about a piece of mail being better then a pill or shot in making me feel better! I received notification yesterday that I have been approved for SSDI and I will start receiving a monthly check starting in August. I can't tell you how happy I am at this time. I wish that I didn't have to draw SSDI and that I could still go to work every day like I used to but that is no longer possible for me and I am happy that the people at SS saw that too! I hadn't planned on retiring until I was close to 70 years old but I guess that the powers that be saw fit to have me retire a little earlier then that. I will be 59 on Monday, July 25th so it isn't all that much earlier but...

I have not been tolerating the heat very well this summer at all. I guess 100+ degree days are hard on everyone but my going in and out of air conditioned buildings and cars plays havoc on my joint and tissues. I am achy all over like I have some horrible flu and I have been stumbling around a lot more. I get so tired and fatigued that I just can't seem to get enough sleep/rest and end up going to bed earlier and getting up later each day. Damn I am so tired of all this!

Heather took me out yesterday to lunch at Two Olives in Moore, OK then we went to and Bear Makes Three a stamping store there and had a browse around. Interesting place. Can't believe I have lived 10 miles from it all these years and have never been in there! Heather then took me to Porch's School Supply in OKC and once again I didn't know anything about it. Heather bought me some new oil crayons, black gesso, and acrylic medium to use in making my art journals. After all that we went to see a movie and saw Transformers! I really liked the first Transformers movie but didn't think much of the second one and this third one is awesome. I recommend going to see it if you liked the first one. After the movie we went to Barnes and Noble had a Starbuck's Latte and shared a piece of CheeseCake Factory chocolate cheesecake before she brought me home. I have been really tired all day long due to all the activity but I had a blast. Thank you daughter for a really fun day!

So it was a really good day yesterday for me! Hope everyone else gets days like this. We all need it with all the crap we put up with having these disorders. Hang in there! I am thinking about you!

Wednesday, July 13, 2011

Translator Needed ASAP!

I just received a letter in the mail from the Social Security Disability Administration where they had sent me notification that my case had been reconsidered and that they had found that I meet the medical requirements for disability benefits BUT that they had not yet made a decision about whether I meet the non-medical requirements but that they would be making a decision soon. Okay here is where I need a translator...If I meet medical requirements and I have paid into SS since I was 14 what other requirements must I meet? It seems to me that before they wasted all their time and money that they would have determined that I qualified for non-medical reasons first off...don't you think. Does anyone know what they mean by non-medical reasons? I am who I am, I am 59, I have had the same SS number forever and I have paid in since 1966 so what else could there be to deciding non-medical reasons. I am hoping that it is something simple and all someone has to do is look in the computer and see when I paid in and when it stopped and that will be it. Knowing the government I may qualify for SS before I get this disability started.

Instead of bitching I probably should be thanking my lucky stars that they decided that health wise I am not blowing smoke at them and that I do qualify medically for the benefits. I haven't been able to work since October of last year and going that long without my added income hasn't been the easiest thing to do. I know that you don't get paid for the first 6 months you haven't been able to work but I have been off for 10 months so I assume they will pay me for the other four months once they decide I qualify on non-medical grounds. What really caused me some concern though was before they even made a decision on the non-medical requirements they tell me that I will have 60 days to appeal the determination they have made. Whats up with that??????

It has been a totally messed up couple of weeks for me due to health issues and other problems. I got a call from my new Dr. Malik to tell me about the hepatitis screen being positive for Hep A and Hep B. Not a biggie since I was pos for Hep A 50 years ago when a group at school all got it and then I have had vaccinations for Hep B the last 20 years at work. A second call from Dr. Malik was to let me know that I had a Vitamin D deficiency that she is putting me on Vitamin D to correct. I did some investigating and evidently 40% of people with FM have a Vitamin D deficiency. Another issue is I don't think I am handling the heat very well this year at all. I have been trying to get out in the pool every evening for an hour or so alternating between floating on a mat and treading water trying to get a little bit of non-impact gentle exercise in. And what is it with the headaches? I have had a headache just about everyday resulting in me self medicating with hydrocodone tabs and going to bed. I have had friends without other health issues complain to me that they are having headaches the past couple weeks too. Maybe it is just the heat causing everyone to be a little on the dehydrated side and maybe it is the environment cooking in the high heat to the point that it is releasing toxins, allergens etc that everyone is reacting to!

My temper has been on edge all this time. I feel like I am a time bomb waiting to explode on any given day. Poor Chuck he is at ground zero and catches a lot of the fall out from it. Yesterday my dear daughter-in-law posted something on her Facebook page and a friend of hers responded in a way I thought was wrong attacking my son and I exploded at that. My DIL has only been in the family about 3 years and I have never had a meltdown that she has witnessed so my son ended up calling me last night to find out if I was okay or not. I felt so bad after I blew up but I was also very convinced that I was right in what I said that I refused to take my comments off the page. Chad told me he appreciated me taking up for him and that he didn't want me to take the comment down. SO the world now knows I can be a bitch too!

The SS decision was one piece of good news I had this week and a second one was that the insurance company was going to reroof our house due to the hail damage we received last month. So life is looking up in some ways in Doswellville. Hope it keeps going now that it is on a roll...hopefully a monetary roll. I am tired of being broke!

Tuesday, July 12, 2011

The way it is...

It has been an interesting couple of weeks since I last posted! Haven't felt much like posting or doing anything else for that matter. SSDD...same shit different day! I am kind of down in the mouth about my life right now and probably shouldn't be blogging in this frame of mind. I went to bed about 11:30 last night and was awake at 2:30 trying to decide whether I should get up or not. I am just about ready to go back to bed and it is just about 7 am. This is my life! I wish I could work again but I get so fatigued just working around the house or going grocery shopping that it takes me 2-3 days to recover from that. I think I am bored in some ways and need to find an outlet that allows me to feel productive and useful!

Have you ever had a week where you just wish you could hit the rewind button and start it all over again? This week has been that way. I have pretty much had a headache of greater and lesser intensity all week. A Tylenol or Ibuprofen dulls it down but it still is nagging there. I am not sleeping well at all and I quit taking the Ambien after a few doses that Dr. Malik prescribed for me because it made me feel very drugged and I had a horrible time remembering what I needed to remember. Example of my forgetfulness is writing checks or pulling money out of the account and not remembering until they notify me I have overdrawn. Thats another bummer too...I am so broke and I am so tired of it.

It has been God awful hot this past 2 weeks so I am stuck in the house cause I can't deal with the outside temps. Temperatures have rocketed up to 100 degrees or better everyday making going outside a real effort for me. I am thinking that may be the cause of the headaches and increased pain problems for me this week too. My body seems super sensitive to external temperature changes here lately with my toes and fingers staying cold all the time due to the AC running full blast. I have turned it is on 78 deg now and sometimes for no reason I will still be freezing. Got that covered! I just go outside till I am warm again. I have increased my intake of fluids and tried to make sure I take all my medications as I should but it has still been a crappy week.

I think that the only thing good this week has been the inspector came to look at the roof on the house and determined that the insurance is going to replace it for us. Yay! We have a lot of hail damage from that last big storm here in Norman so whilst I was griping about the hail storm I guess I should have been praising it for getting us a new roof.

I am signing off now. I am not fit company for anyone right now. I might try to go back to bed. We will see. Hope everyone has a great day.

Friday, July 1, 2011

Doctors visit June 29, 2011

Went to see a new doctor last Wednesday. I decided I had all the diagnosis I wanted but needed someone who knew what I had and how to handle it. Now Dr. Merrill is an awesome doc so don't think I am dissing him but he himself said he didn't know what else he could do for me and advised me to see a neurologist. Now Dr. Merrill referred me to Dr. Kershen who isn't a stupid doctor he is just a very opinionated one and decided that there wasn't anything neurologically wrong with me and that Dr. Merrill could handle my Fibromyalgia and CFS! Well, hmmmm...I am glad he didn't want to take me on as a patient!

The doctor I went to see Wednesday is Sanobar Malik MD. Dr. Malik is a rheumatologist and immunologist that trained at King Edward Medical University in Lahore, Pakistan and at the University of Oklahoma. I really like that Dr. Malik is soft spoken and she very holistically approached what my symptoms were and why I felt this way or that. By the time I left her office I felt like I had had the third degree and that she hadn't left a stone unturned. I didn't feel like I had been talked down to or made to feel like I was a crock of contradictions and she didn't once say that didn't make sense or demean my answers. I was happy to hear that she wasn't going to change any medications until she had some tests results back and the only drug she added was a sleeping pill, Ambien, to the list of drugs cause she said I can't go without good sleep. I hate the medication changes cause they wreak havoc with my system until I get used to them. I was impressed that she didn't tell me that if I lost weight, exercised more, or did this or that that I could improve my situation. I was impressed that she didn't offer any stop gap diagnoses or attempt to WOW with me her intelligence. I felt I was sitting there visiting with a friend.

Dr. Malik gave me a list of different lab tests that I had to have drawn at least 3 weeks before my next visit on August 5th. I went in on July 5th and had them drawn to make sure they are all back. There must have been 25 tests or more listed on the paper. It took 11 of the big tubes and 2 of the small ones and me peeing in a bottle to get them all covered. WOW! I sure hope she finds what she is looking for in that mess cause I think the next step is a spinal tap! I am not looking forward to that. I am a whiner when it comes to my spine and needles.

If you have CFS/ME or Fibromyalgia you know how relieved I felt when I left her office. I feel the same with Dr. Merrill because he knows me but everyone else I have had to deal with since I have become sick looks at me and immediately jumps to the conclusions that I am lazy, overweight, whiner that really doesn't have anything wrong with me. I hope that she finds out what is wrong and causing the FM and CFS and can treat it so I get rid of some of the never ending pain. I have been having such headaches this past couple weeks I spend most of my time in bed or on the couch cause I just can't function on the pain meds. The pain pills work well for the osteoarthritis and the headaches but not the FM or CFS. Wonder why. Till next time...

Thursday, June 23, 2011

Women's Pain issues

I ran across another article today that I feel impelled to pass on to people to read. Especially my women friends who are pain sufferers like me. I received an email today from Research1st a group under the CFIDS Association regarding the release of a new chronic pain study by the Institute of Medicine (IOM) that will be released on June 29, 2011. At the request of Congress and HHS, the Institute of Medicine (IOM) is addressing the current state of the science with respect to pain research, care, and education. The IOM has focused specifically on, “identifying demographic groups and special populations, including older adults, individuals with co-morbidities, and cognitive impairment, that may be disparately undertreated for pain, and discuss related research needs, barriers particularly associated with these demographic groups, and opportunities to reduce such barriers.”

Evidently pain in the female population has reached such proportions that the IOM and the Department of Health and Human Services (HHS) are receiving federal funding to do research on the issue. In particular chronic pain issues in women! Yay God!!! About time. One page 13 (appropriate page number) they have a figure/schematic regarding “The Perfect Storm of Women’s Pain Policy” –How discrimination impacts women with chronic pain.
I think any woman with chronic pain could have saved the government a ton of money (if they would have listened to us lowly women) regarding the discrimination in pain management.

This is a worthwhile read! I enjoyed it! I am now looking forward to the new report coming out on June 29th!!!

Tuesday, June 21, 2011

Orthostatic Intolerance

I read an article from Research 1st today about orthostatic intolerance and thought I should share the information in case someone else is having the same problems. Research 1st is a project of The CFIDS Association of America. I copied this next bit from their website, "Research1st, a project of the CFIDS Association of America, the world's largest organization dedicated to making chronic fatigue syndrome widely understood, diagnosable, curable and preventable. CFS is also known as chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME, ME/CFS, or CFS/ME). We’re intensifying efforts across the field to build a critical mass of rigorous research that validates the biological basis for CFS and leads to improved methods of diagnosis and treatment."

Now back to the original reason for this post. The article came about because a woman asked a question on the Facebook site of the CFIDS site and Research1st did some investigation of the question and got back to her. The article "Is It Anxiety or OI?" I think they did a good job answering the question posed by the woman. The gist of it is that they showed a difference in what is SOMATIC (physically real) not PSYCHOSOMATIC (all in your head!) For so long I took care of people that came into the hospital thinking that they were making it up, having a breakdown, seeking drugs etc. but I didn't think it was 'real'. I think that as a health care provider I have learned more about these disorders, CFIDS, FM,RLS, etc by having been diagnosed with them then I ever did as a professional.

I have been having problems with orthostatic intolerance for many years and was told a long time ago that I was having 'panic/anxiety' issues and when that didn't work orthostatic hypotension/hypertension. I would walk into a building and my heart would start pounding and I would become short of breath, head would swirl, legs get weak, and down I would go. Never mind that prior to walking into the building I was fine and I was fine within minutes of the episode! It made no difference if I was going shopping, to church, work or whatever it would occur! Most times I wasn't stressed or anxious at all just doing what I was doing. I would get light headed rising up from a chair, short of breath walking from the kitchen sink to the livingroom, or go to bed at night and have episodes of tachycardia and shortness of breath. Most episodes were new around any type of even light physical activity. Interesting thing was they didn't happen frequently enough it would be come an issue and if I went to the doctor complaining about the tachycardia and the other issues they looked at me like I was nuts.

Read the article! I was happy to see that they did some research to help the woman...and the rest of us out.

Friday, June 17, 2011

Life expectancy for women drops!

Imagine my surprise a few minutes ago while web surfing I ran across this article on CNN. Life expectancy in U.S. trails top nations by Karen Pallarito. The article states that the life expectancy in most U.S. counties lags behind that of the world's healthiest nations, in some cases by 50 years or more, according to a new analysis of government data.

In the article I read that women's life expectancy has decreased significantly and despite the excellent health care we have here in the states the life expectancy is similar to 1957. Oklahoma has 82% of the counties slipping or failing to rise in life expectancy for women. Scary thought since I live in Oklahoma. Some of the causes might be smoking, obesity, heart disease, high blood pressure, lack of exercise, stressors etc.

Wednesday, June 8, 2011

Double the costs

Just read an article on the Fibromyalgia blog that I thought I would pass along.
The article is called STUDY: Direct Medical Costs Are Double for Patients with Fibromyalgia

At first reading I thought that this seems to a waste of needed research money cause we all know that being blessed with fibro is actually a terrible curse! Every time I go to the doctor it is hundreds if not a thousand dollars in money put out on testing. I wondered what powers that be did I piss off so bad that they saddled me with CFS and Fibromyalgia! Now I am resigned to the fact that this is my life that I am saddled with and it is up to me to make of it what I can.

I know that we know the double costs and double standards for sufferers of FM and CFS and I guess with this type of research others will too! It is another blog post on how FM and CFS patients are treated with their 'fictitious' diseases because looks at us don't we look great!!

Thursday, June 2, 2011

XMRV not the cause of CFS now!

There has been new findings about the XMRV not being the cause of CFS as previously reported. Looks like people jumped on a wagon without thoroughly researching the data before publishing it. The CFIDS association published an article out of ScienceNow today regarding a retraction of an article I read on the CFS website few weeks ago. The article has now caused and uproar and there is a demand to retract the article due to lack of evidence. I found the original article by following the original link I put on my blog. It makes me angry that these scientist are so unscrupulous to print findings that haven't been verified or makes up data just so they can get in print. I don't think they or a loved one are blessed with the disorder or they would be working harder to make sure what the put out is verifiable before printing it.

I have been so tired and lacking stamina for so long I was hoping that the retrovirus theory was going to pan out. As the retraction article states, "CFS patients, who have no treatment for their baffling condition, have paid intense attention to the XMRV findings with some already taking antiretroviral drugs marketed to combat HIV." The cure can sometimes be worse then the disease but like them I was going to ask the doctor on the next visit if I could try an antiretroviral drug. I am willing to try just about anything to feel better again.

Hang in there! Someday someone will find out what is causing this and our world will change for the better! I hope!

Sunday, May 29, 2011

May 28, 2011

Where has the month gone...must be the pills I have been taking making me lose track of time! That is a joke but there is more than a grain of truth to it too!

I have had a fairly good month so far with my pain being fairly tolerable with only one or two pain pills a day to help out! I thought I would try to not take the damn things but folks life is too short and I feel better when I take them. They don't seem to help that Fibro pain a whole lot but they work fabulously on the osteoarthritic pain and the headaches I have been getting.

Heather's Mother in law passed away on May 9, 2011 after a long battle with her cancer. Michael was already up there so Heather and I traveled up on May 10, 2011 by car to help support him as he buried his Mother. We ended up staying there for a total of 12 days and helped a little bit this helping sort things out in her house before we came home on the 21 May so Heather could go to work that next Monday in Salina, KS. It was a busy and difficult time for everyone. I tolerated the strange bed and activity fairly well but was ever so happy to come home.

I have finished the appeal paperwork finally for my appeal with the Social Security Disability people and will be going to drop off some paper work next week to finish it off. I assume it will be another long waiting game to see whether I get approved or not. If I don't this time then I will be hiring an attorney to assist me with the procedure. I probably should have to begin with but I thought I could do it myself. They always know all the right buzz words etc. My doctor wrote a really nice note to the SSDI about my disability and how I can't work so I am hoping they will listen to him.

I called a nurse recruiter (she's a friend) at the hospital where I worked and explained my situation to her regarding my medical condition and about what the SSA had written me about how I could do some work and asked her if she had a position for me. She told me that she doubted any hospital in the metro area would hire me given my situation. I can't walk more than 5-10 minutes without tiring, can't sit more than 30-45 min at a time then I have trouble getting up and walking after sitting that long. I get dizzy and some times fall. I fatigue easily and do not recover readily. When I get tired my memory and recall are very poor. It takes a couple days for me to recover after just a few hours grocery shopping and that with a handicap sticker and the go carts in the stores.

I have an appointment the 29 June with a rheumatologist that I am hoping will be able to give me more insight into what is going on with me. I don't understand why it takes so long to get in to see a doctor in this town!!

Tuesday, May 3, 2011

I am you!! You are me!! A story!

I think that everyone who knows me knows I am a RN and knows that for 36 years I worked as a nurse in ICU, CCU, and ER. I became a house supervisor for 8 years before I had to go out on medical leave in 2010. Those same people will tell you I was good nurse and knew my stuff and I was willing to be taught or teach as the need be. When I became sick in 2009 I didn't realize how long I had been 'coming down' with the disorder until I was so overcome with it I couldn't function any longer.

The years leading up to the diagnosis of this disorder...can't call it a disease because it isn't...took over 20 years to reach its climax. I had never really been sick and with the exception of a backache here or there, all nurses can relate to that, I was healthy. I had been diagnosed in
• 1990 with an insulinoma and hypoglycemia, only thing I had been diagnosed with before was IBS, hypothyroid, and GERD.
• 1992 I had Lyme's disease,
• 1994 a hysterectomy,
• 1995 was wasted with some kind of pain and depression that they told me was due to hormones and once that was regulated I was okay!
• 1999 I started having upper respiratory and asthma problems that in 2001 climaxed in a pneumonia and I was hospitalized for a week. I quit the job in ER and the asthma etc went away. Hmmmm....wonder why they were always testing air quality in that old ER? I didn't pay a bill for the hospital then either because workman's comp picked it up.
• 2007 had facial cancer and reconstruction done that unleashed a whole new bag of neurological problems. 2 types of atypical migraines, a feeling of bugs crawling all over my face, problems swallowing, and pain. Pain was all over my body. I had no stamina and talk about tired. I couldn't get enough rest.
• 2009 I started having memory and pain issues. Phantom pain...came and went. I couldn't walk long distances. I forgot things and seemed to have short-term memory issues. Not good for a supervisor or a 56 year old. It seemed like it took more effort to do anything. Headaches increased, legs hurt, and back always hurt me. I went to my doctor who had MRI done and I was told it was a pinched nerve that doesn't exist now. Thank God I didn’t have the surgery they were pushing me to have!
• 2010 July. I went to a clinic after work one morning because I could hardly speak, had a fever, sore throat, had a rash, red palms, headache from hell that was blurring my vision and I thought I hurt before…it wasn’t anything compared to the pain I had now. They ran lab, x-rays, etc but nothing was out of whack enough for me to be given a diagnosis for what was going on. They sent me home with 2 types of antibiotic and pain pills. I saw internists, dermatologist, dentist, neurologist but nothing was every discovered as a cause. In August the rash and everything left but I still hurt all the time. Sleep was impossible cause I would wake up and hurt. I would be in bed 2/3 of my time cause I was so tired. I couldn't get rested. The more tired I became the worse all my symptoms became. My memory is the thing that bothers me more than anything because when I get the least bit tired I become dangerous to myself and others. I got lost in downtown OKC one day after a long day. I was tired. I sat and cried till a homeless lady came and knocked on the window to ask how I was. Bless her! I can't remember algorithms or drugs. I can't function as anything that needs accurate memory when I am tired.
• 2010 September I was told that I probably had some kind of an autoimmune disorder but that my labs weren’t skewed enough for it to be diagnosed. I was diagnosed with what I thought as a non-existent disorder called Fibromyalgia (FM) and Chronic Fatigue syndrome (CFS). Oh my God! I looked at the doctor and told him I wasn’t a drug seeker. The narcotics don’t really even start to touch the pain I have with this. Dr. Merrill was very understanding and told me that he knows me and he knew that I wasn’t a drug seeker and went on to explain how he had arrived at the diagnoses. I also found out that I have restless leg syndrome that most people who have CFS and FM have. There are other smaller side disorders but all in all the major diagnosis threw me a hook I have a hard time accepting. I told my husband that I knew I had something not THAT disorder. As time has gone on I realize from all the research and similar cases that is exactly what I have. It is a lifetime sentence and it doesn’t get much better…you just learn what you can do and what you can’t. You learn to live with it.
• 2010 October. I had already cut back to one day a week because working caused me all sorts of issues. It literally took 2-3 days to get over working one day and when I tried to work 2 in a row I couldn’t do it. I worked 4 hours in the second day and had to go home where I stayed in bed almost a week. I don’t work now. I applied for SSDI but have been turned down. I will appeal it cause there is no way I can work.

I saw a friend (who will remain nameless cause she is a nurse) for lunch the other day that I haven’t seen in a couple years. When she asked me what I was doing now and I told her my problems I was surprised by her reaction! She immediately told me to find another doctor and in the same sentence told me that it was a non-existent disorder. When I told her that it was recognized and covered by the College of Rheumatology and that they were handling research etc, she still refused to be swayed. I was actually even more surprised when she told me that I looked too healthy to have THAT and that there was something wrong with me that they just didn’t know about.

Aren’t we nurses horrible! People with CFS and FM get that response all the time. There are snake oil sellers out there trying to sell us a cure that we buy cause we are willing to try anything to feel better. I would like one day without pain. We look too healthy, too good, to really be so sick and in pain all the time. I would like to take time at this moment to apologize to all the patients that came to me that were really in pain with this disorder and I judged them wrongly! I too am blessed with it now and I will be among those supporting research being done to help those of us that are blessed with this God-awful disorder. I am you!! You are me!! an I wouldn't wish this on anyone!

Is it possible?

I just read an article about CFS possibly being caused by a retrovirus. In an article about chronic fatigue syndrome and XMRV published in the Oct. 8, 2009 issue of Science Express,a group of researchers show that 67% of people diagnosed with CFS also have the XMRV virus. XMRV Link to CFS Accelerates Scientific Inquiry There are a lot of retroviruses out there and I am sure that they will find more disorders caused by these viruses in the future. There are a lot of conflicting articles out there and this reminds me a lot of all the research flying around in the early 80's when HIV and Aides was first identified. I think that there will a lot more research done especially since federal funding is opening up for researchers of the retroviruses.

Boy I am glad I did my microbiology courses before all of these were found! I probably would have failed Micro and never made it to being a nurse or decided with all this nastiness around I didn't want to be a nurse.

Monday, May 2, 2011

2 May, 2011

It has been an interesting couple of weeks for me. I had decided several months ago to taper off some medications and see if I could do without them! I can say now that it probably wasn't a good idea to go off my estrogen and synthyroid! I have been told I have turned into a super bitch the past month which I attribute to the lack of estrogen. I am so tired now that it is an issue getting out of bed and I sleep 12 hours or more a day. It has started warming up in Oklahoma but I am cold all the time. My husband complains that my hands and feet and even arms and buttocks feel like they have come out of a refrigerator! I think I am more depressed but with the crap I deal with from the chronic fatigue and the FM who knows. Some other symptoms are I am constipated, I hurt a lot more, my skin is dry and flaky, my nails are thinner and are peeling, and I had a weight gain of 5# last month. My hands and feet are swelling, my sister called me Chuck on the phone the other day cause my voice was rough. I had been on the Synthyroid since I was 10 years old and the estrogen since 1994 and why I thought I didn't need them I don't know.

I probably ought to step back and let the doctor diagnose and treat me but since the CFS and FM have started I will try anything to feel good again! I am tired of being tired all the time and I am tired of being sick and in pain all the time. I don't know what I did to deserve this and wish it would stabilize somehow!

I don't have a job anymore and can't pass the physical to get another one. As I wrote before that I was turned down by disability...I am appealing that like most everyone I know I am broke! I wasn't a good saver and didn't for see being disabled at 58 and not being able to continue working in some capacity. Okay enough of a whine! I think I will go take a nap!

Saturday, April 23, 2011

postural hypotension...or I get light headed when I stand up!!!

"Central and cerebrovascular effects of leg crossing in humans with sympathetic failure"
Mark P.M. Harms,* Wouter Wieling,* Willy N.J.M. Colier,† Jacques W.M. Lenders,‡ Niels H. Secher,§ and Johannes J. van Lieshout*
click the link above to read the article or go to:

I read this article earlier today and thought to myself that it made sense to me that if you crossed your legs and kept gravity from helping the blood to flow down in to your legs that you probably would have more circulating blood for your heart and brain!! Just saying...makes sense to me!

For people with CFS/ME sometimes postural hypotension can be a real issue. I tend to tip over and fall if I try to get up too quick so I think I will try this procedure for a couple days and see if it works with me. One thing I can see with this study is there seems to be as many researchers as there were people being studied and more ways to skew the results because of so many cooks stirring the pot. Worth a try though!

Friday, April 22, 2011

Denied Disability 04/21/2011

Well I am not very happy tonight for many reasons not the least of which I received notification from Social Security that I didn't meet their criteria for disability. They said and I quote, "Although you are experiencing pain in your back, you are able to sit, stand, bend, and walk well enough to do some type of work. Your arthritis causes you some pain and discomfort; however you can still move well enough to so some types of work. Although you have pain and discomfort in your joints you can move them well enought to do some kinds of work. Although you sometimes experience depression, there are no signs of a severe mental illness that keeps you from working. Most of the time you can think clearly and carry out normal activities. Although you sometimes experience memory problems, most of the time you can think clearly and carry out normal activities. While we find that the pain of your condition does further limit you to some extent, you can still do some types of work. Medical evidence does not show any other impairments which keep you from working."

I don't know how they can decide the way they do. I was told that they never give out disability unless it is a life threatening issue on the first go around and that you have to appeal or hire a lawyer to get the disability started for you. It just doesn't seem fair to cause all the physical and mental anguish this brings about to the person and their families. I haven't worked in almost 7 months now and before that I had not worked full time for 2 months because of physical issues. Our lifestyle has changed drastically over that time. Things I used to take for granted are now a luxury. I can't even afford the freaking medications that keep me halfway feeling 'normal'. I have become so accustomed to being in pain and hurting I don't know that I would know what it was like not to hurt. There are days I am in bed more than out because of the pain or fatigue. I just wonder if they even think about that before they deny people? They say I can do some work...where will I find a job that pays $35/hr plus differentials? They even said in the denial letter that based on information about what an RN does I am capable of doing this type of work. I wake up every morning and it takes 2-3 hours to get rid of the brain fog I have. I am fine for the next 2-3 hours but then I start getting tired again and the truth is I don't have all the mental issues until I get tired. Do you want me taking care of your loved one when I can't remember what I am suppose to be doing? Most hospitals only hire on a 12 hour shift now days. I can't make it 3-4 hours now. I was on my feet at least 8 hours of that time and I can't do that now.
I don't know what to do. I almost feel too tired to do much of anything tonight so I will wait till morning to make a decision. I do know that I will appeal the finding, get my doctor to say he doesn't think I can do it and see what happens from there.

Monday, April 4, 2011

It has been an interesting week for me. The beginning of the week I was in bed most of Monday, all of Tuesday, and most of Wednesday. Couldn't hardly move and get around. I went to the grocery on Wednesday then came home and didn't go out again until late Friday to get my hair cut and go to a scrapbooking crop at my friends store.

The crop was to run from 10am till 2am on Friday and Saturday then from 10am till 4pm on Sunday. Needless to say I didn't attend the whole party! I got there about 6 pm on Friday and made it till 2am then went home to bed and slept till 2pm on Saturday after noon. I was at the store by 4pm and stayed until 2am again. Sunday I went and picked up my stuff. I couldn't get out of bed until way late. I used to be able to go all day long each day but not anymore!
When I left there I was so tired I could hardly move. I am the one on the left...don't I look fried? No drugs so that was all natural gorked outness!

Compare that picture with this one taken on Saturday March 26th with the kids class! It was about 1:30pm and I was feeling good. Didn't feel a need for a nap or anything.
I think I get to feeling good(and Saturday and Sunday I felt good) so I do a lot of stuff (probably over did things) and ended up paying for it in down days.

I am a slow learner and have done this a number of times. I need to learn to pace myself a little better and not think like I am super woman on the up days!

Hope you have a good week!

Tuesday, March 29, 2011

My last doctor's visit

I went to visit the disability doctor in Oklahoma City last Thursday. I don't know whether to be glad that part is over or wish I could do it all again. I wasn't having a very good day and even though I thought I had gotten enough sleep etc. I woke up hurting all over my body and had a headache from hell. Worse part of all was that the headache was giving me grief and my memory was horrible. Heather accompanied me to the visit and I had to get her to help me remember surgery dates etc. I guess I need to start writing them down for the days she won't be with me. I asked if she could come back in the exam room with me but he preferred to try and do the visit with just the two of us and I was oh so fearful...without cause it turns out.

I had a visit with Dr. J Burke a Social Security Disability investigator. Dr. Burke was the very epitome of patience with me and if he had a private practice I might even think about going to him as a patient! When I had difficulty with a question he would approach it from a different direction and the answers would come. I failed the physical part of the test cause with the pain and stiff muscles I could barely stand on two feet much less one and forget hopping. I left with some interesting information too cause during the course of the exam he told me he thought that I might even be early stages of Parkinson's Disease. Since my father died of PD in 1989 it is possible I inherited the disorder from him. I you read the signs and symptoms of Parkinson's Disease and those of fibromyalgia/CFS they are so much alike it looks like I have a waiting game to play now to see what develops.

I don't want any of the disorders but if it came to it I think I would prefer the FB/CFS over the PD! Keep checking back. It may be years but I will eventually find out what is wrong with me!

Thursday, March 17, 2011

Doctors visits

Went to see the Social Security Disability psychologist on Tuesday of this week here in Norman. I don't know that it was a necessary visit but it was a hoop that I have to jump through in order to get approved for disability! I think they were looking to see if I was a psychosomatic nut case and not really disabled. They sent me to visit with a PhD psychologist that told me all about his many degrees of which psychology wasn't his first. He was actually a PhD in Physics and worked for NASA before retiring and turning to psychology and getting a PhD in that! The guy was smart I will give him that but interpersonal skills were limited! He told me that he never hears the outcome of the cases so not to blame him but that he felt I was justified in filing for the disability. Now does that mean he will recommend they give it to me? I don't know!

Today I went to see a neurologist in Oklahoma City to see if he can figure out what is going on with my balance and gait. After sitting a waiting for a period of time the doctor himself showed me back to his office and did a minimal exam, told me that he did all of his office work himself and didn't believe in office nurses. Cheap huh! Three hours later I left the building wondering why I had even bothered to go to see him. His diagnosis was that I have some medical issue not neurological issue and that he wouldn't be able to do anything to help me! He told me that he would recommend that Dr. Merrill send me on to see a Rheumatologist because of the pain and balance issues. I did get some good news...I don't need back surgery like they told me 2 years ago cause my leg and foot pain couldn't be caused by my congenital defect and I don't have Parkinson's, brain cancer/tumor, organic brain deterioration, or MS! Nice!

Hummm.... I seem to be up shits creek this week batting 0-2 with the doctors I was dealt. I still hurt! I am still ignorant of what is causing all my problems. I guess I will have to give in and go along with the diagnosis of fibromyalgia, chronic fatigue syndrome, restless leg, IBS etc. cause nothing seems to be wrong with me according to the lab tests, xrays, MRI, and cat scans. This is so frustrating to feel so bad and not know what is wrong! I am a black and white type of girl and I am not fitting into any box I know how to draw!

Tuesday, March 15, 2011

CFS and Fibro

I have had CFS for years and years and intermittently had the pain from Fibro. Now they are around all the time. I crash more frequently now then in the past and I have been down now since last June or July. It is like a horrible bad flu that has been going on for a long, long long time. I keep getting told the same crap and I am so tired of it. I think my doctor is great and he is really supportive but...

I just listened to a seminar talk from Stanford researcher that just tied in to my issues and I thought I would share this with you. "Dr. Jose Montoya of Stanford University has recently launched the Stanford Chronic Fatigue Initiative. In this presentation recorded at Stanford Hospital, he discusses CFS and his research interest in infections and CFS." Give it a view and let me know what you think. The URL is

Thursday, March 10, 2011

Medication interaction

In an earlier blog post I reported about going to Walgreen's to pick up my new pain medication and the pharmacist refusing to fill it for me due to a "possible" drug interaction between the drug Savella and the new drug Tramadol/Ultram! The pharmacist said they would call Dr. Merrill and alert him to the fact and ask him what he would like to RX instead of the Tramadol/Ultram. Well folks that was on Friday night and today they called and told me that my prescription was ready to be picked up (Glad I still had some pills here or I would have been in a world of hurt literally!) I went over to get it and stood in line for just about 45 minutes and found out that they had recommended that he increase the Lortab dosage to control my pain! Lortab helps some but doesn't do a whole lot for the neural pain. It helps the arthritic and the headaches but not the achey all over pain I have most days. It is a Schedule 2 narcotic that is highly sought after by drug addicts and and it very addictive. Being a nurse I am concerned with the possibility of becoming tolerant to the medication and having to increase the dosage and then becoming addicted. That's why after reading online about the Tramadol/Ultram being used more and more for neural pain effectively I wanted to try it. Oh well, I don't want to get off the Savella cause it seems to be doing me more good then the Lyrica and Nortrylline did.

Here is a link to an article about serotonin syndrome on Wikipedia that I found interesting.
I am glad that the pharmacist caught this. I sure didn't want it.

Sunday, March 6, 2011

Today's Status report

I have not felt good for about 4 days and today I really feel like warmed over dog poo! I have had that flu that has been going around for about 10 days and truthfully if it wasn't for the cough and fever the muscle aches and pains wouldn't seem much different the the ones I put up with on a daily basis.

This afternoon I woke up around 4pm-ish and almost fell getting out of bed. I had slept fitfully off and on almost 12 hours today. I hurt all over more than anywhere else and my legs felt like they were freezing and tingly but when I rubbed them they felt warm. I had cramps all over in my lower extremities, my back from cervical to lumbar had spots that hurt like hell and I wanted to detach my left hip so I didn't have to feel it anymore. My right should and arm hurt like I had carpel tunnel or something and then to top it all off my brain has been so foggy even after 3 cups of coffee I still feel drugged or drunk!

I know all of the above is symptoms of the fibromyalgia but this day it seems worse than ever before. I am really tired of feeling bad and hurting all the time. I have taken on some positive lifestyle changes ie diet and exercise but really can't notice a change. I bought the book T'ai Chi for Dummies, Gentle Yoga the 15 minute workout, and have watched a couple videos on Netflix that I am hoping will help. I am afraid to leave home and go for a walk cause what if I have one of those episodes and I can't make it home? I would have my phone and be able to call for help but...

I had this brain storm a couple months ago that maybe my medications might be contributing to the problems with my health. I ran out of synthyroid, found some in the cabinet and weaned myself off of what I had left, I weaned my self off of omperozole and estrogen so now all I take is the Savella, Requip, Ibuprofen, and the occasional Lortab and Tums antacid. Dr. Merrill was surprised I had done this but like I told him I had been on the synthyroid for 48 years and I didn't know whether I even needed it cause there were no tests 48 years ago to say I needed it just some old doctors guess and by golly. I had lab this past month and the thyroid levels were no different then when I had the last test while on it. I guess I will go a few months and have it tested again. I went to Walgreen's to pick up my Lortab and Tramadol (new pain Rx) last night and the pharmacist refused to give it to me saying that the tramadol would cause problems with Serotonin levels and interact with the Savella so that wasn't a good idea. One more thing.

I go to see the psychologist Fuchs, for the social security disability people, on the 16 March. I already know what he is going to say. I am depressed. I told them that! Why wouldn't I be depressed? I am not a going to take a gun to my brain and end it all type of depressed I am just down because of all this crap that is going on. I think that anyone suffering with chronic pain or any other chronic ailment would be depressed and if they weren't I would seriously look into what was wrong with them!!

Enough whining. I will persevere! I am made of strong stock and will keep on keeping on. My grandmother used to say God didn't give you more than you can handle...I don't know about that! I don't believe in it!

Wednesday, February 23, 2011


I applied for Social Security Disability about several months ago because Dr. Merrill thought that it would be a good idea because he didn't foresee any great change in my condition. I thought that it would be a quick fix but 5 months later I am telling you there is nothing quick about the Social Security Administration.
I am scheduled to see a psychologist on Tuesday week after next week for evaluation of my psyche! Then the next day my doctor is sending me to a neurologist in Oklahoma City to see if he figure out what is going on with my balance etc. Dr. Merrill's words were that he doesn't know what to do and he thinks this neurologist MIGHT be able to figure it out. Now it doesn't stop there. The next week the SSDI people have set up an appointment with a Dr. Burke, an osteopathic doctor, for me to evaluate my condition.
I guess I could stay up all night and be in a good condition for him to evaluate me huh!! That's when I have the most problems when I am tired and stressed.

Saturday, February 19, 2011

Discovery CME program

I just watched a program that has put out on Fibromyalgia. I think the program was very well done and does define what the disease process is all about. It is a 4 segment program that you can watch when you find time. It is geared towards the health care professional but not so high tech that a lay person can't understand it. The name of the program is Fibromyalgia: From Diagnosis to Treatment.

If this link doesn't work the URL is:

I had to log in but I have done CME's there before so I don't know if you have to register to view it or not.

Friday, February 18, 2011

headaches and pains

I went to my brothers house for a visit last weekend and it has taken me almost a week to recover. The trip down was not a problem...about four hours sitting in the car...but a combination of the trip, sleeping in a strange bed, stress from being out of the norm and then the trip home did me in. I don't know what I could have done different but I had a flare up. The headaches are what are really amazing. I seem to be more sensitive to light and noise and have to take care with enclosed spaces. My brother has a new house with high ceilings, lots of windows, and things tend to echo.

I have been up since about 0300 this morning. I go to see the doctor today at about 2pm and I am hoping he will have some suggestions to help me sleep. I need something to knock me out or something cause I am getting so tired so easily. I can't seem to function on a basic level. Here is an article I read by Adrienne Dellwo about FM pain. it is called the 7 Types of Fibromyalgia Pain. I thought it said it right!

When I get tired I get to having memory problems and have difficulty recalling much of anything. I seem to be in a constant fog most days. I thought at first this was my age...58 and I thought OMG! Alzheimer's but it isn't that. Here is another article by the same author regarding the fibrofog!

Enough gripes and moans. I will be back later with a report from the doctor.

Monday, February 7, 2011

Okienurse's Fibromyalgia Blog: 02/07/2011

Well Sunday went by pretty well with just the regular achiness until about 8pm when I started to get a headache from hell. I just couldn't handle it anymore so I took a pill and went to bed!

Sunday, February 6, 2011

Okienurse's Fibromyalgia Blog: 02/05/2011

My day started off great today and then deteriorated. Took me almost 5 hours to grocery shop today and I almost gave it up and called my daughter to come get me. I could have called my husband but I don't know if he could have gotten his low slung car out of the drive.

I got up about 11:30 and felt pretty good. I had an achiness and 'itchiness' on my back that seems to come and go. I am attributing the achiness to the Fibro and the itchiness to dry skin. My husband tried some of his cream for itchiness on my back a couple days ago but it didn't work. It may be neuro!

About 4:30 I decided I needed to run to the store and pick up a few things that I hadn't purchased when Heather and I went to the store a couple days ago and ended up on a wild goose chase around town. Thank god I have a freezer full of stuff cause the four stores I went to sure didn't. I went to 2 Homelands and 2 WalMarts and neither one had a dozen eggs. I finally bought a quart of egg whites and I am hoping that will last until the trucks can make it through the snow. Egg whites aren't bad for cooking in recipes but I know the difference when I make an omelet or scrambled eggs. I couldn't find any store with any ground beef at all. I did see a package of the 96/4 at Walmart but they wanted $4 a pound for it. There was no ground turkey or chicken anyplace either. I found the whole experience stressful and ended up having more pain and memory issues with the third place I went.

One of the good things/bad things that happened in my journeys was that I saw and spoke with a lot of people I hadn't seen in a long, long, long time. I stood and talked with a nurse I used to work with...Hi Lenora!...and swapped lies about what we are doing now. I spent over an hour talking with my nephew and his girlfriend and really tired myself out cause I spent the whole time standing rather than sitting down to talk.

I got home about 10 pm and Chuck helped me carry stuff in to the house and I fixed me something to eat...I didn't eat the whole day...I just forgot. That is an issue I have too...if I get really tired I get forgetful and I forget everything. I forget to eat a lot and have been losing a half of a pound here and there. Not complaining mind you but my blood sugar drops and I get more confused then! I also had a migraine to go with it. It started about 7:30...second store...and lasted till I went to bed last night.A new problem today was what I am sure is a dry eye issue. I began having blurred vision, eyes began itching, I couldn't focus even with the glasses on and if I tried to read a label I would get watery eyes. Something new every day around here.

I went to bed early...about 12:30 and didn't get up until 10am. I feel really tired and grouchy today. I am suppose to go to two different Super Bowl Parties but I really just want to go back to bed. I don't know how being around people and noise are going to effect the headache that is starting up. I am going to take some Ibuprofen and see if it helps. My pain scale rating for yesterday is a 4-5/90% of the day.

Reading over this post I think I sound like a whiner and I don't mean to come across that way. I used to have an exceptionally high pain tolerance but now I seem to hurt and whine a lot! Sorry if you stumble on this site but it is a learning experience for me.

Saturday, February 5, 2011

Okienurse's Fibromyalgia Blog: 02/04/2011

Yesterday turned out to be a fairly good day for me. I woke up about 11 am and it was a snowy gray day! With my usual grim reaper attitude I thought to myself that I was sure it was going to be the pits and even though I was relatively pain free at the moment I just knew that the pain in my back and neck work worsen as the day wore on! I know suck it up girl! I hate whiners!!

Any how my daughter came over about 4pm to pick me up to go to Leslie's scrapbook store for a crop and I was really dreading getting out in the cold and damp but surprise I didn't have much problems cause I took my routine meds on time and added an 800mg Ibuprofen to the mix. I did pretty well until I got tired then I started getting foggy headed and the pain in my legs, back and neck increased. We packed up and headed home just before midnight. I did get a couple of nice tags made that I will post on my Okienurse Paper and Ink blog later today.

Good day today. Pain was minimal...maybe I should make the Ibuprofen a routine twice to three times a day medication... until later in the evening when I ended up taking another Ibuprofen. I developed a migraine while working on the crafts so I took a Lortab and went to bed. Woke up feeling good this morning (2/5.

Friday, February 4, 2011

Okienurse's Fibromyalgia Blog: February 3, 2011

Sorry it has been a couple days since I posted last but quite truthfully I haven't felt like posting much. I try to deny this crap alters my lifestyle but that is a lie to myself. Today was the first day I have been out of the house since last Saturday night and I probably wouldn't have gotten out today if my daughter hadn't come to pull me out of bed and make me go. I was a horrible night trying to sleep last night. I couldn't get comfortable any which way I turned and then in the early morning hours my husband rolled over and cuddled up against my back and I had such pain that I actually felt shocks in my toes and feet. My doctors appointment on Wednesday was canceled because of the blizzard on Tuesday so this will be something new to pass on to him. On to happier things...

The first stop today was a hair cut for me. I haven't had my hair cut since last November so needless to say I was starting to look a little like a shaggy dog. My stylist Carrie told me today that she also has been diagnosed with fibro. Carrie said that after she had her son almost all her symptoms disappeared and now she only has a mild flair up once in awhile. I wish!!! Her son is in 3rd grade so I hope her good luck continues with the decreased flare ups. I had an interesting thing happen when she was cutting my hair at my neckline. I actually had spears of pain go into my neck and back when she was cutting it. When she stopped it stopped but during the experience I almost went to tears. Thank God it didn't last long. There was a 30 minute wait to get my hair done so we walked over to Target (right next door) and bought some cat liter and made it back just in time to get my hair cut! Talk about time management.

Second stop was to eat some lunch at Johnny Carinos. I love the bread and yummy pasta there! Heather is vegan and sometimes it is hard to find food for her just anywhere but like she said usually there is no problem at a Mexican or Italian restaurant and both of us love those types of ethnic foods.

Next we went to Hobby Lobby to get some glue runners for me so I would have a supply to make my projects with. I wish I could afford to order it all from Stampin Up! but being off work without pay for so long has made me reconsider where my penny's get spent!

By this time I was starting to get a little tired so we went over to Heather's house to sit around and visit with her husband and a friend for a little while to rest up before she took me to Walmart to pick up a few essential groceries I needed then she brought me home. All in all I had a good day and didn't have to ride one of those damnable...only because I hate riding in them...electronic shopping carts. I made it through all the stores and Heather carried most of the stuff through the snow into the house for me. I love my baby girl and she certainly goes above and beyond to help me.

It has been a good day for me with just a mild flu type achiness in my back and chest wall but now I am hurting 6/10scale and I just took a Lortab 10mg after taking a Ibuprofen 800mg an hour ago. As soon as this kicks in I am going to bed and trying to sleep. I really feel worn out and beat down right now. That's the way of it though! Good days and Bad days. Today wasn't bad until now! More tomorrow!

Reading material for today!

I just read this article and thought I would add it to this post! I am also going to add it as a Facebook status! There is proof that we are really in pain!! As if we didn't know...right!!! A new paper* from the University of Michigan Health System (11/2006)says there is "overwhelming data" that the condition is real! This article cites MRI and electron Spect tomography showing a difference in patients with fibro pain and those without!

*University of Michigan Health System (2006, November 28). Pain From Fibromyalgia Is Real, Researchers Say. ScienceDaily.

Monday, January 31, 2011

Okienurse's Fibromyalgia Blog: January 31, 2011: My day

I went to bed at 2:30am this morning after having a fairly good day yesterday. Today I was up and about by 11:30. I can remember tossing and turning and waking my self up a couple times but this morning when I got up I felt rested.

I finished a load of laundry, made the bed, loaded the dishwasher and sat down to read emails about 15 minutes into sitting there I began to hurt between my shoulders and from my neck. I got up and started moving around but it is so cold outside today for me to go out my arthritis would kick in to play with the FM and it isn't worth it. I took my Savella and the Requip a little late this morning so that maybe part of the reason.

Today was a pretty good day so I think I am going to rate it a 2/100%. I know people...a two is nothing but you know one thing I am learning is that the pain even when it is only a 2 is still enough to alter my life! It was a good day!

Okienurse's Fibromyalgia Blog: January 30, 2011 Pain scales

A friend told me that the pain scale that I had put down to document my pain was a little difficult to follow so here is a simple and easy way to rate it.

This pain scale was posted at a hospice site. Pretty visual and simple.

My pain rating scale is more object and breaks it down better for me:
1... will be just a nagging ache that is relieved by sitting down if I am standing, or standing if I am sitting etc. A change in position.
2... will be a nagging ache in multiple areas of my body.
3... will be a achiness that persists in multiple areas of my body regardless of change in position or activity. I have to take a Tylenol or Ibuprofen to help relieve it.
5... is when I have to repeat the OTC medication and end up having to go to bed or resort to taking a narcotic pain pill.
6... Add the atypical/focal migraine in and I am debilitated more than normal to the above symptoms.
7, 8, 9....just more of the same with repeats in drugs with decreasing efficiency.
10... will be when everything I do at home doesn't help and I have to call the doctor or go to the ER.

Whatever way you choose to rate your pain you need to make sure that you and your caregivers (family, doctor, nurses etc.) are all on the same page so there is no confusion as to your need for medication or treatment and what that medication or treatment should be. Don't be tough and think you can ignore the pain because chances are with Fibromyalgia the extra stress of trying to ride it out will only make it worse! Trust me I am an expert on that concept! For years I have put off accepting I have something wrong with me and being a nurse working in ER I thought every person that came in with FM was drug seeking but that just isn't true. That's not to say a percentage of people presenting to ER claiming to have FM pain either don't really have FM and are truly drug seeking. There are too many people who like the drugs for recreational purposes.

Most of the true FM people I know would rather cut off a hand then go to an ER for help. Most of us live in a world where no one believes we hurt THIS bad when in reality it is probably even a worse pain. As a nurse I had problems getting my brain wrapped around a normal person, looking pink and pretty, being in that much pain. I am a believer now!

My day today could be rated as a 3/75% of the day. The other 25% was about a 4 and I ended up taking an Ibuprofen 800mg twice today.

Sunday, January 30, 2011

Okienurse's Fibromyalgia Blog: January 29, 2011: Pain scale

Today has been a busy day and I am so tired now I can't sleep. I have been having quite a bit of pain today and resorted to taking a pain pill at about 7:30 this evening cause I just got tired of it. My neck, back, chest wall, hips and the backs of my thighs all hurt most of the day. I decided I was going to start a pain scale rating and what portion of the day I had the pain in a journal on my iPhone so I can show it to the doctor when I go in for appointments. I am going to say my pain was a constant achiness all day starting from the moment I became aware of it when I woke up, before I got out of the bed. I will call this a 5/75% of the day. I still have pain but I think if I hadn't taken a pain pill I would have ended up having problems.

Pain rating scale:
1... will be just a nagging ache that is relieved by sitting down if I am standing, or standing if I am sitting etc. A change in position.
2... will be a nagging ache in multiple areas of my body.
3... will be a achiness that persists in multiple areas of my body regardless of change in position or activity. I have to take a Tylenol or Ibuprofen to help relieve it.
5... is when I have to repeat the OTC medication and end up having to go to bed or resort to taking a narcotic pain pill.
6... Add the atypical/focal migraine in and I am debilitated more than normal to the above symptoms.
7, 8, 9....just more of the same with repeats in drugs with decreasing efficiency.
10... will be when everything I do at home doesn't help and I have to call the doctor or go to the ER.

Luckily my pain hasn't gotten to that level and I hope it never does.
I will put the percentage of the day down that I was bothered by it and notate if it was consistent throughout the day or when it got better/worse.

I got up about 10:00 this morning and ran to a class at the local scrapbook store. I was tired when I got there and achy all over. I decided to just stay and work until supper to try and get a scrapbook layout completed for a class so Leslie could have it to show people what the class was going to be about. About 4 pm I really started aching more and more till finally I started feeling nauseated. I realized my head was hurting in my right eye and temple so I took some ibuprofen 800mg and drank a cup of coffee and it seemed to help. At 6pm I went to dinner with the family and the restaurant was busy and noisy and my headache became worse and I couldn't seem to get comfortable at the table. By 7pm I resorted to the Lortab 10mg to try and make it more tolerable which it did. I went back to the scrapbook store to gather my stuff up and went home. I tried to go to bed but I couldn't sleep. It is now almost 6 am and I am going to try again.

I am going to say it was a 5/75% of the day. I need to get some rest cause I have promised to help my daughter with a card making event today. The weather was beautiful today in the 70's and sunny.

Saturday, January 29, 2011

Okienurse's Fibromyalgia Blog: My first fibromyalgia blog post January 29, 2011

Hi my name is Vickie, I am 58 years old, and I have Fibromyalgia! I don't like the diagnosis but in the past two years I have had hundreds of tests run and nothing seems to be showing up on xray, MRI, lab or whatever. I have gone through round of PT and it feels good while doing it but the minute I am off the table I hurt again. I started having problems a couple of years ago but everyone kept telling me it was my back or my this or my that. I can remember the first time I had these type of symptoms was in 1992 and I went to the doctor and they told me I had Lyme's Disease and I was treated for that and I seemed to be fine until 1994 when I had my hysterectomy and spent the next year in hell. Since then my symptoms come and go but these past two years they haven't gone away and seem to have decided to stay this time.

My main symptoms seem to be a pain that never goes away. I can take pain medication and the pain is just dulled. I hurt in my neck, back, upper and lower, even my chest wall/ribs hurt and it sometimes hurts to breathe. My legs and hips hurt all the time and I have an icy hot tingling in my toes on the right foot and the soles of both feet. My doctor says I have some osteoarthritis in my knees. I don't sleep well either night or day so I am absolutely fatigued every morning when I wake up. I have restless leg syndrome where my legs just won't stay still and they will bother me so much that I roll around in bed all night trying to get comfortable even taking sleeping pills. I have stomach problems and a lot of foods bother me. I have hypothyroid disease, IBS, GERD, and take medications for that. My doctor has prescribed a bunch of medications for me but some of them are so expensive I don't know if I will be able to afford them if I can't go back to work. I am having a lot of fibro fog right now and have trouble remembering things and recalling what people tell me just a few minutes ago. This whole disorder is a bummer and I tend to stay depressed a good deal of the time.

SO you say why are you blogging this. Well I am hoping that maybe I can make sense out of this stuff and maybe someone else will surf in to the blog that has FM and can help me or maybe I can help them. This is really a lonely bummer disorder because you can't prove you have anything wrong and I feel like people think I am a fake sometimes. Anyhow this is what I am up to and I am going to try and blog every day and see what comes of it.