I Am Not Lazy

Sometimes people have real interesting views on my fibromyalgia. More accurately they have interesting views on what I can and cannot do. I do not do very many social activities. I also do not do a lot of physical activities at work. I thought I was making up for that by doing other things. Apparently that is not what other people think or more accurately see. I need a lot of down time. Even when I am not having a painful day, I still have some pain. My body does not do the things other people seem to do easily. Pain is a good marker to watch. At least for me it is. I stopped feeling like I needed to explain or apologize for what I am doing. At some point I was tired of hearing myself explain, once again, why I could not do something. I am re-thinking that because I do not want to hurt people’s feelings or give the impression I do not want to do my share. I do the things I do to stay as healthy and as active as I can. I do not want to stay home many days. I used to like going to resource fairs for work. But if I want to work at a job I love and spend time with children and grandchildren I must stay home some days. I do not want friends to be upset with me or co-workers to feel put upon. My health is a priority for me though. Pain teaches a person a lot. People cannot always see that though. I need to remember that people need to know I still am interested in them and enjoy them and want to help. What is true for me is not necessarily true for them. I do hope and pray that everyone learns to do and ask for what they need to stay healthy.

Waiting

It is soo slow. I of course am ready for a motorized scooter or wheelchair today. But government agencies do not work that quickly. I finally called the doctor's office. I of course asked about the scooter. The nurse kept talking about sending the doctor's notes. I need to remember the agency I am working with Louisiana Rehabilitation Services (LRS) for a few years has been under the Workforce Commission. The Workforce Commission is what they used to call the Unemployment office. I guess it is more efficient to have employment related agencies under one roof. Any way LRS is what is called Vocational Rehabilitation in other states. Back to my story, the Workforce Commission (ie LRS) asks for the doctor's notes first to see if they can find a diagnosis. Then they ask for a diagnosis/prognosis directly. I am still in the first stage of seeing if I qualify for services at all. I guess I am concerned because I got so many of my diagnosis while my children were still young and long before this doctor. Although I consider Fibromyalgia my primary diagnosis I have many others, sleep apnea, RLS, a metal pin in my arm, among others. That is all I know at this point.

More Wheelchair Business

I had the next appointment at our state's Vocational Rehabilitation. The meeting went better than I thought. The counselor at least seems open to helping me. I am still going through the process. It was just exhausting. I guess I had not thought about all the diagnoses I have. The most upsetting part was how they feed into each other. I was exhausted after the one and a half hour meeting. The counselor was very thorough. The next step is the counselor is sending a release and request for information to my doctor. My doctor has already said she would help. I will post more as I learn more.

I have not posted in a very long time again. I guess I need to write some more about what is happening to me I find it hard to write about myself. I can write about the adult children with autism easier. Well all the adult children.n I am finally at the point that having Fibromyalgia is affecting my work in a large way. I am forgetting appointments on a regular basis. The joys of fibrofog. I am also not able to get places I need to be for meetings. I need a wheelchair. The one that would fit my weight is expensive though. At least expensive for me. I also do not have any way to get another vehicle so it needs to be one I can take apart. I have found one but the expense... I have insurance with the Affordable Heath Care Act. But as close as I understand they only pay for part of it. I made an appointment with our state's vocational rehabilitation to see if they can help. I will post more as I know more. Do you have any experience on trying to get a wheelchair? It would definitely be simpler if I could pay for it myself.

Fibromyalgia and Night Terrors: Are They Connected

A lot of people, me included, have experienced night terrors and vivid dreams that seem to be connected to fibromyalgia. There are many explanations of night terrors. Medications, stress, fears, or anxiety are some of the things that can cause a flare up. Those very things seem to cause night terrors as well. I have dreamed many times of situations that cause me pain only to wake up in the middle of a flare. For instance I might dream something is happening to my hands and wake up with extreme pain in my hands. I find this disturbing. In the past I was having problems with night terrors and mentioned it to my doctor. He went through all of my medications and changed some. I have heard other women talk about their doctor doing this too. One of them said it was her ‘brain chemistry’ medication but another friend said it was her cholesterol medication. The friend with the cholesterol medication doctor had her cut back over three weeks and then titrate up slowly. Now she only has occasional night mares. Still another acquaintance said it was because of an over the counter sleep medication. When she stopped taking it the night terrors stopped. One of the concerns over my night terrors was whether I had sleep apnea. Many people who have sleep apnea have night terrors. I also found out from the sleep doctor that a surprising number of people who have fibromyalgia have sleep apnea. I have acquaintances, a mother and daughter, that both have fibromyalgia and sleep apnea. So does fibromyalgia cause night terrors? The answer seems to be yes and no. It also can be caused by medications for fibromyalgia and other medications. Night terrors are also caused by sleep apnea. There are too many people with fibromyalgia who have night terrors for there not to be a correlation between them.

It's strange that two of my son's have problems with pain. Neither one of them have been diagnosed with fibromyalgia...yet. The oldest one has small lumps about the size of my thumb. There are maybe 14 of them in various places on his body. He's only 32 years old. Anyway the doctor originally and still thinks that they are lymph nodes. I'm trying to get my son to get his teeth fixed. That is one of the first things the doctor that diagnosed me told me to do. Of course my son doesn't believe me. I tried to tell him how bad my lymph nodes were at the beginning. It's better now. I guess because I don't push so hard. I get more rest and eat healthier food. I also use a variety of non-medication techniques for the pain. Hopefully he will get it before long.

Fibromyalgia Pain

I sit here and try to think about what to write about. All I can think of for the past several weeks is all the times that I am in pain. I was at a training and the only thing I could think of the whole day was how much pain I was in. The only reason I didn't leave is that my employer had paid alot for me to be there. I learned that day around the pain. Another day I hurt I decided it was because of the weather. The only problem with that is that there is always weather coming or going. That struck me as funny that day. I laughed around the pain. Another day I had a meeting to go to. I didn't think I could walk that far. I told a co-worker I could go if she would come get me and drop me at the door. I wanted to go. She didn't want to bring me with her. I missed a meeting around the pain. And life goes on. I learn despite the pain. I laugh through some pain. I miss something because of pain. I guess that's just the way it goes. What do you do to get through it? I really want to know.