Accident - Minor

Accident - Minor

Like other people with fibromyalgia I am in pain all the time. I really try hard not to complain every day but I hurt till I could cry every day. I still get up and go to work. This is my dream job. (Well aside from an astronaut. 😛)

Some how I hurt my foot. I don't know how. I am very careful of my feet. I step out of my recliner into my shoes. I step out of the shower into my shoes. It is actually funny because I never wore shoes as a teenager or young adult.

Anyway my foot felt like razor blades were under it for days. Of course I decided it was getting gangrene because it hurt so bad. I would have to get my foot cut off and wouldn't be able to walk or drive at all. (It is my left foot not the one I drive with.)

My daughter took this picture. There are only two little red marks about the size of two gum balls.  It really hurt though. I finally had to take a sick day at work. I hardly ever take sick days.

The only thing I can figure is the fibromyalgia multiplied the pain from the two little raw spots. Then the stress of being in pain for so many years now made me anxious.

My daughter is helping me clean it and dress it. I can't really see it myself so this is a huge help.  I need to remember that even the slightest accident will cause me to feel pain beyond what is reasonable though. I knew that but I suppose I forgot.

Mylinda

Moving

Moving

We moved again. This is the second time in 5 years. Of course my fibromyalgia flares befor, during, and after moving. I needed a house bad the first time. It was really a terrible house though. I told the landlord to tear it down to the ground. He laughed but I tried to tell him.

There are less stairs at the new house. Even though there were only three steps in and two steps from the livingroom to the kitchen at the old house those steps gave me pain. So less steps at the new house is good.

It is just so hard to explain to other people who don't have fibromyalgia. I sleep in a recliner due to my sleep apnea. The recliner sits differently at this house which makes me hurt. The floors have different pitches that make me hurt. Even the toilet being in a different position makes me hurt.

The lymph nodes in my arms ard the size of 50 cent pieces... I am trying every trick I know to function in my family and work but this is a pretty bad flare. Unfortunately I think the long term answer will be time for my body to adjust.

Till next time,
Mylinda

Cardboard

Cardboard

It's funny the things you learn from having fibromyalgia.  As I have gotten sicker I have learned how to order things online. Since I can not just pick up and go shopping any more I had to come up with a strategy to get basic things that I need like toilet paper or ibuprofen or even shoes.

That was a learning curve for me. The funny part is that I have learned so much about cardboard. You wouldn't think there was much difference in cardboard. There is the solid kind like the back of a writing tablet or the covers on a notebook and then there was the cardboard from a box. Right?

Well yes and no. Cardboard from a box, corragated cardboard to be more exact, comes in different qualities for want of a better description. Let me explain, I started to have a need for something cheap and disposable for light cushioning for different activities in my life. I needed a little accomodation or modification to make things comfortable for me to continue to work and be independent. 

I could buy thin foam but it wasn't cheap. I could but thick foam but it was too thick and not cheap.  Both types of foam were prone to fall apart quickly and easily with a lot of use. Folded cloth could be cheap depending on where I sourced it but it wasn't very strong and not really disposable.  I have been thinking and trying different solutions for about a year.

In conversation with a friend she suggested cardboard. It was strong enough not to fall apart and diposable.  I certainly was throwing out boxes several times a month. It was free and free is for me. As well as I liked the whole reusing and recycling idea. I only have so much stuff to store in a box so this was a good second use for a box.

After a period of time using parts of boxes for cushioning I realized that a few of boxes were so much sturdier than the others.  I don't know if there is really a rating for corrugated boxes or not but I can now tell by touching the box if it is better quality. I then squirrel away that cardboard in the supply I use for cushioning.

I am sure I probably would have never noticed the difference except for complications from fibromyalgia though.

Till next time.
Mylinda

Strange Pains

Strange Pains

The strange pains associated with fibromyalgia always surprise me. My doctor told me the pain in my feet was from neuropathy from the fibromyalgia. Then the itchy feelings in the joints in my hands was from the fibromyalgia.  

The breast pain was from the same thing.  Now the pain in my chest is from issues in the cartlidge from the fibromyalgia. Oh yes and the pain in my eyes that has grown over the years is from...you guessed it, fibromyalgia.  Apparently if it hurts it is fibromyalgia.

I check with other people who have fibromyalgia and they have these pains too. 

Till next time, 

Mylinda

My Yule Time Prayer

My Yule Time Prayer

Holidays, work, family - all of these seem to be working in concert to keep me stressed and in pain. It is multiplied when all three areas of my life are out of sync. 

Then if course hurting makes me more stressed. I know holidays are supposed to be for family but I just wish for peace during this holiday. 

Best Neighbor Sign

Best Neighbor Sign

In the town I work in they have these yard signs that say 'best neighbor'.  I am always amused when I see them.  I suppose you get the award for how clean and neat your yard and house is.  The yards are always lovely. They are neatly trimmed with little to no tree branches or materials. The bushes are well cut and clean. Each blade of grass is the proper length.

The house bricks are clean or in the rare chance it is a wooden or vinyl house it doesn't have mildew and is well painted. There isn't old cars or chairs or anything visible to break up the landscape either.

In the past I guess 3 or 4 years since I started using a wheelchair my ideas about things have changed.  At time I roll up and down sidewalks in my powerchair. I like going places by myself if I can. Like I said my view has changed. I am surprised at the houses and businesses that have lovely well taken care of houses/buildings with horrible sidewalks. I realize sidewalks may not technically be part of their yard but really?

The grass growing or that they just blew onto the sidewalk is theirs. The branches form their bushes or trees are theirs too. I don't know how many times I have been scratched up by branches. The bushes around the house are well sculpted though.

I think whoever is giving out these awards should add a category about the sidewalks. That is who you can really tell which household has good neighbors or not.

While they are at it a question about whether the household's vehicle is parked over the side walk would be informative too.  Many homes have vehicles parked in the driveway but over the sidewalk blocking wheelchairs and pedestrians. Maybe you have to go in the street to get by or turn around and go back far enough to get to the street. 

How neighborly is that?  Is there a law about that?

Till next time.

Mylinda

Long Time

Wow, it has been a long time since I needed to write about Fibromyalgia and myself. It has been since the middle of 2017.  It isn't that I don't have to deal with it everyday though. 

I guess I have concentrated more on social media than here. I still read blogs but I am not sure most other people do. Some of my favorite blogs aren't active or are on some kind of recycle program that shows old posts.

Anyway I feel the need to write again. I think most of my observations are about both of my wheelchairs and life using them. We will see where it goes though.

I suspect like most of my writing what I write takes on a life and direction of its own.  I don't know if I have any readers any more.  So if you are reading this drop me a comment about what you are doing now.

Till next time.
Mylinda

Wheelchair Adventures

I haven't posted in a while.  I don't really even know if anyone reads these.  I did finally get my power wheelchair.  It took a solid year.  I have learned so much during that year and am still learning since I got it.

I suppose I thought things would be so much better when I got the power chair.  And it is, I can go places I have not been in years.  I can do things that it had become impossible for me to do.  Unfortunately there is a whole set of challenges I have bumped into since getting the chair and am still trying to figure out.

Most of those challenges have to do with the life.  For instance, I had been told I might have to pay a little more for car insurance.  Well because I have an older model car and because the lift is worth as much as my car my car insurance doubled!!  That was the first of many surprises.

I thought about starting another blog with the name of this post.  Then I though of all the things including the wheelchair I wanted to talk about.  So I am going to stick with this one.  Whether anyone reads it or not. :-)

I Ain't Right Story

I know I never blog about my experience with fibromyalgia often enough.  I post on Facebook more often but not enough their either.  I always believe I will and try to do better but life gets in the way.  And pain.  Pain gets in the way.

Anyway, here is my latest story.  The setup is a little religious but the story is not really.  

I like to watch a religious channel on Saturday evenings.   They have gospel and Christian music.  Afterwards they have an hour where there is someone featured.  Usually a single musician performs but sometimes a comedian.  

There is one in particular that talks about his life and how crazy it is every day.  Then he will say "I ain't right.  And God loves me anyway."  So here is my "I ain't right story".  

I have been having a particularly rough week pain-wise.  Just like everyone else with fibromyalgia I hurt all the time but there are times it is worse.  I still work so it is a struggle every day to get up and get going.  This day was particularly rough.

I usually take my medicine and wait for about 5 minutes for the pain pills to kick in so I can get dressed.  This particular morning I kept waiting and waiting.  I finally had to text my boss and tell her I was going to be late.  

My dog was whining at me.  I was trying to figure out how to get my dog her medicine.  Sometimes the simplest tasks seem so complicated.  At that point I realized I still had my pain medication and my blood pressure medication in my hand.  

I had been sitting there for over thirty minutes waiting for my medicine to kick in.  I ain't right.  FibroFog is a wonderful thing - NOT.  Fibromyalgia does things to my mind and my body.  

I hope I made you laugh a little.  Humor is a good thing.  It is healing.  What funny stories do you have?

The struggles of fibromyalgia.  I have been able to creatively structure my life to get necessary things done.  I have been able to structure my work to get certain parts done.  That has been going on for a long time.  It feels like all of a sudden I could not do my job.

I mean I know I have been gradually doing less and less.  Up until June 2014 of last year I could pull it together and do whatever I needed to do.  It was a shock in March 2015 when I realized that was over.  I could not do a certain things that I had to do and I could not hide it.

I started hiring someone to help me occasionally and renting a manual chair.  I still do the vast majority of my job.  I love helping families.  I just need to and want to help them in a larger of variety of ways.  That was when I decided one of the things that would help was to get a scooter.

Well now I plan to get a wheelchair for reasons I mentioned in a blog before this one.  I am just surprised that in 9 short months I went from feeling ok about what I could do to sheer panic.   My friend told me it was not as quick as I feel.  On the one hand I know she is right but on the other the transition from ok to now ok still felt abrupt and quick.  

Pushing Myself

Sometimes I push myself.  I suppose everyone with Fibromyalgia does at times.  I push and I hurt.  I push to get things done.  I also push because I feel like I am getting weaker. My muscles are getting weaker.  It would seem that using my body more would make me stronger.  Like exercising a muscle.

It does not seem to work that way though.  I push and I am down for sometimes days.  Sleep is my main relief.  But if I have to stay in bed because of pushing myself, did I really accomplish anything?  I am conflicted about this.  If I used my body and felt better like I did as a young woman the choices would be much clearer.

I had already decided to speak to the doctor about Physical Therapy to try to keep my strength.  It will have to be after the wheel chair things are finished.  I hate this weak feeling.  I hate Fibromyalgia.

Equipment Evaluations

I have done several evaluations towards getting the wheelchair now.  I let the guy who wanted to do the office evaluation come to my job.  He was very thorough.  He was very kind.  I cried any way.  It is so upsetting to realize how much help you need.

One of the up sides was that he was able too see and suggest so many different types of equipment which would and will make work easier and healthier.  There is a special office chair.  A specially designed key board and mouse.  

Then using the key board will position me farther from the desk so an adjustable arm and longer key board.  He suggested a pen that could record sound.  There is also a small stool so I can raise the leg that has the vascular problems.

I had to travel all the way to Ruston for the wheel chair evaluation and the transportation evaluation.   That was a 4 hour trip one way.  I opted to spend the night before in Ruston at a hotel.  It was exhausting any way.  I was away from my CPAP machine.  I also did not get to sleep on my couch at the right angle.

The team did prove to me that a scooter was not the best choice.  It is difficult to turn.  I felt bad.  I realized that I would not be able to take apart a scooter either.  The person who did the transportation evaluation did have an idea of a type of lift would work for my car.  My car is an older model.  It depended on keeping the weight of the device down.  Again the wheel chair was light enough to do .  it. 

Then we had to go through the whole packet.  That part took for ever.  They asked questions and luckily made suggestions.  I got to choose and say what I wanted.  But truthfully I went with their suggestions the majority of the time.  

Then I still had that 4 hour drive home.  I was hurting and exhausted for days.  All I did was go to work and sleep.  They all let me know when they had done their reports.  I believe the last report was finished and sent in last week.  I need to call the LRS (Vocational Rehabilation) Counselor to figure out the next step.  

Vocational Rehabilitation Approval

I have made it through the first part of the process to get a wheelchair for work. I had to be approved for services at Louisiana Rehabilitation Service. LRS is my state's Vocational Rehabilitation agency. I am surprised that this part went so smoothly.

I guess I had the right information and combination of diagnosis for this to work. Fibromyalgia, sleep apnea, RLS, obesity, and a metal plate (rod) in my arm. I do not remember what else. I also rented a manual wheelchair to see if I could do that.

 I was not very good at it but I was able to wheel it a little bit. Unfortunately my shoulder was the problem. Years ago the doctor and therapists had told me the metal plate in my elbow area would affect either the joint above it or below it.

 I am waiting to hear from someone about the next step. This seems like such a slow process. Especially considering that I am still trying to figure out how to do what I need to do at work. Hopefully I will not lose my job before this all comes together.

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.