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The photo is my son and myself. Now days you can get a photo made to look old like this one. This photo was taken when this was the new look.

Harry S Truman was president when I was born and world war II had ended. I grew up in a time when lunch was put in a brown paper bag and a sandwich was wrapped with wax paper. There was no such thing as pantyhose, we wore stockings that attached to the rubbery clippy things that attached to the girdle. Convenience stores were not common and when we took a trip we packed a picnic basket because many places did not have fast food. Highways had places to pull over and stop, some with picnic tables. Read more ....
 

Living with chronic pain and conditions with no clear answers

January 30, 2014

This article is written to hopefully help those that are suffering from some type of pain or condition physically or mentally. I am not giving medical advice and only writing from personal experience.  It is for those that have already been to the doctor and explored a cause for their condition.

The pictures in this article are things I have planted in our yard or made with my hands.

Some of us must live with pain that cannot be explained, I live with chronic pain every day as do many others. Some of us have cognitive issues that cannot be explained. Often humans suffer from issues that come and go or stay and no matter how many medical tests they endure there seems to be no answers. I am not suggesting you stop seeing your doctor, I am trying to help you cope with your situation. Possibly you do have a name for what is causing your pain but this condition has no cure.

I had to find a way to live with widespread pain. 

 Other than identical twins, we are all born different and even they have differences. We think, react and do most everything different. Truly doctors should never look for text book symptoms because what is good for one is not always good for another.

My children are very different. One very active and the other very quiet. One allergic to bees and insects the other allergic to molds, grasses and a few foods. My brother had asthma, I had hay fever. He could do most anything and most anything I did I threw up. So if you see this pattern then it makes sense that each of us are going to have issues that may not make sense to some doctors if they are looking for typical.

One of my troubling issues is Meniere's disease which is a ear condition that causes a great deal of issues. Even though they finally gave me a label for this issue I want to know why I have this? What makes it happen in my body? Why is mine so different? I want to avoid doing something that triggers the disease. I was given a list of things to avoid but that does not help me because I am different and so I had to find my own way to cope and one thing I know is if I get the slightest dehydrated the Meniere's will raise it's ugly head.

When my daughter was young she did not like loud sounds. Most people do not like loud sounds but she reacted differently and would curl up and stick her fingers in her ears. She was hot natured and my motherly instinct was to swaddle her up and keep her warm but I had to go against my instinct to bundle her when I learned she would get hot easier than her brother did when he was a baby.  When either of them were ill or fell down and scraped their knee they would react different and I had to adjust to care for their needs and tolerances.

We are not made from a mold and each of us require different care. I live with this chronic pain for many years and many others live with chronic unexplained pain.  We must have a way to cope because doctors have not yet figured out many diseases and medical issues. Just because there are no answers or no name for an ailment does not make it not real. It is very troubling when you are in very bad pain and someone tells you your tests are normal. I have learned that for me I must do things to distract me from this pain. I do not want to take strong pain medication because of the side effects and when it gets very bad I must give in and take ibuprofen but even that I only take when necessary.  There are therapies one can take for pain and modalities and I am not suggesting people to not do this and they should find some form of comfort but reality is there is 24 hours in each day.

There are many people that have health issues, mentally and physically that may never have any answers to what it is that causes what they have. There are many conditions that do have a name but have no cure. This is when you must find a way to cope because if you do not find a way it can lead you into a mindset that you need to be understood or even worse, depression. I have noticed that many people with health issues just want to be heard because it is very difficult to live with pain or disability. I have done this myself during a difficult time. When we are in this mindset we complain and try and explain over and over so someone will just “Get it”. If we keep doing this we can never fully relax when we do have a reprieve from the pain or situation.

We all react to pain different.

Some people are just born different but different from what? If you look at a classroom full of children you are going to find a classroom full of different individuals. If you stand up there and teach them all the same some are going to get it and some not. Some will go through full of opportunities and some will go through life faking it and just getting by so does this make them different? No this is a faulty way to teach a child.Thank goodness for those creative teachers.

If I am looking for something and it is somewhere with many things around it I have difficulty finding that item. My mother could find a 4 leaf clover faster than anyone I knew. I could never find a 4 leaf clover because what I saw was a sea of clover. But I have a very creative brain and my husband says (in a loving way) it never shuts off. I am a problem solver, not math, a real problem solver. 

 Each of us have different strong and weak points. I can easily invent something needed. I made a special toilet for a child with cerebral palsy, a unique eye patch for a burn patient and a special lace glove for a man that had severe swelling in a hand and arm that was suffering with a external fixator, So even though I am not book smart and I see things jumbled up, the fact that I grew up with a learning disorder and I still cannot spell very well, I cannot do crossword puzzles, I get extremely sea sick, car sick, swing sick, I cannot memorize things, am awful at looking people in the eyes or recognizing their face but, I can make complicated bobbin lace and unusual furniture pieces.

For a time, as a hobby,  I was designing and building furniture.  I can truly get lost in this kind of work.

Doing something really difficult can distract me from pain but this must be done with no pressure to get it done in a certain length of time.

I am not sure where this was stored in my brain but it was a fun project.

I keep busy in the house and yard when I can. I would like a little sympathy just as much as anyone else but I had to come to terms with all of this and make a decision that I must move forward in a better way.  Complaining was only making me more anxious which causes more pain. I am certain my husband knows by now I am pretty much miserable most of the time but he also know that I use distraction from this pain and there will be days that I have many unfinished projects all over the house because I am trying to cope.  It truly does help me to get lost into a project.

My neighbor's health has declined. He use to go out walking every morning.  He can no longer do the distance and stopped all together.  But then one day recently I noticed him outside walking laps in his driveway. That first day he barely managed one lap, back and forth.  Then a few days later he did the same thing and went inside only to come back out and do another.  He is now walking three laps.

When I physically cannot go anymore I keep my brain busy by knitting, sewing, embroidery, tatting, bobbin lace or which ever of these things I can do that day. Each of these things require a different motion so whichever motion I can do that day without great difficulty that is what I do. I had a very difficult time this past year so I had to let all the gardening just go and so it did.  Everything is a mess in the yard now but my husband said he will help me get the yard back in shape this spring and hopefully we can figure out a way to do things easier.  

Even though I am getting older I try to never stop learning so I do not run out of options. Sometimes I cannot knit due to numbness in my hands but then I can manage to crochet an edge around a wash cloth. I try to make things that are functional so they have a purpose. I know that I must get a certain amount of exercise so I try and do physical activities as often as I can and garden at any opportunity that I can.

I must give my husband credit with our joint work on the furniture. We are not making these items any more. I designed it, drew it out, he cut it out then we worked together putting it all together. This was a project I just let my mind go wild.  I had no idea what I was going to draw and paint, now I look at it and wonder where was that stored in my brain?  We gave the fish chair to a relative, gave the coffee java chair to a coffee shop, gave the bear chair which I forgot to post to our grandson and we kept the turtle table which my daughter keeps reminding me she wants. We were told by the coffee shop that a group of older men come for coffee regularly and one man in particular sat in the chair each time.  He passed away and when the men come for coffee they bring the chair to their table and no one is allowed to sit in the chair.

Another observation

I have concerns that some of the foods we eat could be making some of us sick and possibly very sick. There is a lot of information out there on this and a lot of confusion. Some believe this to be true and some do not but I decided to do my own research and elimination of certain foods and I found out that some of these foods do cause inflammation in my body. I feel it probably has for many years. I may have never been able to tolerate some of these foods and could even explain a lot of stomach issues, headaches, bloating, increased pain and even brain fog. My goal is to feel better and I am concentrating on the foods that I can eat without symptoms. Once again we are all different.

Through all of my years thus far I have never had a doctor ask me about what I eat. I have been given pieces of paper suggesting a low fat diet etc.  But nutrition so far is not been discussed.  Several years ago my husband developed psoriasis.  Why? What changed?  What caused it?  Only medications were prescribed and one of them he refused to take because not enough is know about it.  We asked about was their some kind of diet or nutrition options but were told basically to use the medication.  We decided to make changes in his diet and get away from soaps with a lot of chemicals and filtered his drinking and bathing water, we did a lot of things and in fact his skin did improve greatly.  It did not cure it but we are finding our way through it to make it better.

My niece has three young boys. One of her children has had some kind of sensitivity, ailment or something causing stomach issues and the doctors cannot figure out what is causing the problem. Just because there are no clear conclusions his problem is real. She has made changes in all their diet to help his condition. 

 My Grandson has food allergies and has led us to discovering many of our foods are just botched up junk that we are putting in our bodies and no wonder so many of us have illness with no clear answers. We do not understand why he has food allergies and so we have to focus on what he can eat.

I now look closer at the food I purchase, is it real organic foods or or processed food? What is truly in that food? Do anything you can to take charge of your health because some can eat a certain food with no problems and another cannot. Eating better has decrease some of my pain and a few things have improved all together.

I hope this article will help someone (that has been to the doctor) and they are going through life suffering from something chronic that does not have a lot of answers.  I hope it will help you to ease up if someone else does not understand so you can move forward with that condition. Find other options and yes, you should stay in contact with your doctor.  But when you are alone and suffering try and do something to distract your mind in a productive way.

I am very glad that my husband is kind and considerate and did not run away while I was in that stage of trying to convince him of what I was feeling. I had to finally get to a point that it was me that had to re-focus and find a way to be more comfortable which was change what I eat and do things that I can get lost in my work so my brain will focus on that instead of the pain in my body and the ear sounds that I have with Meniere's.

 I ditched trying to ever be fashionable and I wear loose fitting comfortable clothes and shoes that fit well. I am short and most chairs are too tall so I carry a small camping chair that is comfortable to me if I am going somewhere that might have uncomfortable chairs. If I am sitting somewhere waiting I am the lady sitting in the green chair knitting. And one more thing, if you like the idea of carrying a camping chair, ditch the green bag that comes with it and make a floral cotton case so no one will think you are carrying a weapon :)

Lately I have not been able to make bread without much discomfort and I do dislike the bread machine so I make torillas instead :)

When my children were small and they were unwell I would tell them they were bitten by the Mullygrub bug. I did not know that they did not know that there was not a mullygrub bug until one day when my daughter was tween age I took her to the doctor and I told the doctor she had the mully grubs. He asked me what that was and when I explained it was the name we give things that we don't know what it is. My daughter looked at me and said, “There isn't really a mully grub?”

I call this the starfish turtle table.  It sits in our living room with a lamp and pictures of my husbands grandmother and another of his great aunt.

The turtle head and flippers has texture, I used my sewing netting to help me to make the texture.

I hope your find some kind of peace in this article.

May God Bless you and heal your body, Grandma Donna

 
 
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