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!