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...