Myositis: JO-1 Antibodies

We look normal, and most of the time we act pretty normal, but the truth is that we are not anywhere close to having the capabilities of living a normal life. Our lives are spent fighting a constant battle to maintain our later quality of life.

With each new flare we begin a new fight to get out of the flare up as quickly as possible with as little damage as possible. These active periods of inflammation can be anywhere from a couple of days to a few years in length of duration. When the active period of illness abates then we spend our energies in rebuilding lost muscle and regaining cardiovascular strength in preparation for our next battle with the illness. The damage we prevent today will allow us to walk, to talk, to work and play on another day. To be able to breathe for another day.

People with JO-1 antibodies are unique in that we are forced to fight multiple and recurring forms of inflammation on a day to day basis. We learn to recognize our enemies as they come and go, and we develop a battle plan by learning as much about each unique flare up as we are able to, we are therefor able to minimize the damage done within each current flare. It is also how we minimize the amount of pain that we are forced to exist in and it is how we learn to survive successfully with JO-1 antibodies.

When you fight inflammation, you not only fight for your life, but you also fight for your later quality of life. You fight to reduce or slow the amount of damage that the disease is able to do to your body and you fight to reduce the amount of pain that you are forced to endure.

Each day our lives are spent making choices that will allow our body to survive in a relatively good enough condition to last an almost normal life span. Most people just take for granted that their body will survive long enough for them to get old, we don't because if we do, then it won't.

Dr. Robert Cooper of the UK is doing some amazing research into the significance of antibodies within Myositis. You can view the video of his presentation at the 2011 Myositis Patient conference by visiting: What your antibodies mean.

I often feel that I live in my own little world and that I just venture out every now and then to visit where other people live. My fatigue levels are very high and I don't have the stamina to stay for any length of time in their world. So I go back to mine. I am often frustrated by the situation, I wind up whining and crying like a little kid, because I want so badly to just go out and play like the rest of the world.

But my life is spent conserving my energy. Every single movement that I make during my day is a reduction to the remainder of that day's energy resources. My body makes a mental note, and it is like cash spent, I can't have it back again. I am forced to ration out my energy throughout the day or totally run out of functioning power long before the end of my day occurs.

If I don't budget correctly then I run out of energy. I call this total lack of energy "losing me" and basically, if I misjudge my day's allotment of energy, then I wind up slumped in front of my computer like a car by the side of the road that has run out of gas. There is just nothing left. I am not tired, but neither am I able to function at any emotional or physical level, I look like a babbling, whining drunk who is no longer sober enough to hold himself erect in a chair. My energy is spent and I have no means of acquiring more until I rejuvenate or until the next day's allotment comes available.

In addition to judging my energy supplies I have also learned to live each day as though I live in a war torn country. I am constantly on duty. I battle my enemy with every fiber of my being. Some days I win, and some days the disease does, but I just keep fighting.

Most of the flare ups demand some degree of rest period, or of "falling apart", which is then followed by a course of rebuilding as soon as I am once again able to. This rebuilt material gives me something to lose in the next battle, so although the enemy may occasionally win the battle, it is only taking the same piece of land time and time again. This is how I can slow down the course of the illness.

Although I wish that it was not an aspect of my illness that must occur, I often am forced to sacrifice things that I would like to do, so that I can accomplish the things that I must do. During periods of extreme flare up this is an aspect of the illness that happens all too frequently.

When the extreme illness flare is attacking my muscle then that type of flare up requires maximum rest to prevent damage. I must stop virtually all extra activity and allow my body to totally fall apart. In about a week or two I will attempt mild yoga exercises, if the illness gets worse then I know that the illness is still battling a quiet enemy, and I will stop and wait.

In another week I will try again to increase my activity levels, and I will continue to use this method of attack, until I am able to begin rebuilding my muscle again. I then begin a slow and steady increase in the amount of exercise I am able to do, that is until the illness once again demands that I once again stop, and fall apart.

When things get too difficult for me to handle on my own then physio therapy provides much needed massage and stretching therapy to my damaged muscles.

When the illness affects my circulatory system or my metabolism then a lot of my fight is with increases to my medications, salt water soakings, alternative therapies and massage. My use of antioxidants is maxed during periods of extreme flare.

When the disease goes into a rheumatoid flare up then I still have some ability to fight with exercise. The pool allows me to maintain muscle strength even during the flare as the water takes the stress off my joints. I can also usually continue my yoga exercises during these periods, but generally this is in a much reduced capacity, as I can no longer get myself down to the ground. I do only the standing exercises during these flare ups.

An all out attack will leave me relying on prayer and the power of endorphins to pull me up. I do everything possible to live in an imaginary stress free existence. I play my favorite music, sing, dance (although sometimes this is nothing more than a painful shuffle), watch comedies, laugh, and do everything that I can to encourage a peaceful happy feeling to engulf my body. Singing helps to keep the mucous from building in my lungs.

Many foods can act as a natural therapy for illnesses such as arthritis or other inflammatory based illnesses. There are many herbs, spices, and other foods which can help to improve your health.

Ginger, turmeric, cinnamon, and garlic are just a few spices which can help to keep you healthy. So spice up your food. It may help you to feel better.

I am constantly looking for a way to be well, constantly fighting to maintain as much of myself as I can until the day comes when they discover what is making me ill, and I can have that blessed remission that will let me be me again. I just want to live without having to worry about running out of energy or doing more damage to my body than I should.

There seems to be a protein diet link which can affect my health levels, but I have not figured out why, or how it happens. I do seem to have to consume protein throughout the day and insure that I have a good quality protein amongst this. When I attended the 2011 Myositis patient conference others who suffer from myositis also mentioned that eating a high protein diet seems to help them. I try to include one egg a day into my diet plan, and find that if I forget to include it for a few days, that my health and energy levels are adversely affected.

The various inflammatory periods that I experience come and go in waves, sometimes only one form of inflammation attacks me, and sometimes there is an all out attack launched against me. I deal with each inflammation flare individually and on the terms that the illness itself sets out.

My lungs are an area that I am constantly fighting to maintain. Lung specific steroids are used throughout the year generally for two to three month periods at a time. As the illness allows I fight for my right to be able to walk, or dance, and for opportunities to improve my lung capacity.

Generally if I avoid hills and stairs then my stamina levels, and joints, hold out pretty good and I am able to get in some degree of walking. When my joints get inflamed then I used to head for the pool. The past few pool visits though had me concerned as I now seem to choke very easily on any water that might accidentally get splashed my way. Perhaps the weakness in my throat now makes it more difficult for me to fend off these little unexpected intakes of water. It's a little scary.

When the muscle weakness or pain forces me to fall completely apart then I begin to walk again as soon as I am able to. It seems that I spend my life falling apart, then rebuilding again as soon as I am able to, and I wait for the day that I won't have to stop what I am doing because I am too tired to continue. I wait for the day that I won't have to go home and recuperate. The day that I will be strong enough to just go work and play like everyone else. The day when I no longer have to live in my own little world.

My right arm no longer lowers to my side. It is believed that the muscle leading from the neck down into the shoulder has shrunk, this raises my shoulder, and pulls up my arm. I was working part time at a call center to supplement my small government disability pension when this damage occurred.

This now permanent additional disability occurred because I continued to work after my hand and arm became inflamed. Because I did not have other income options at that time I continued to push myself at work even when I knew that I should not.

I did not have a very understanding physician at the time and he was reluctant to sign the papers which would allow me the unemployment benefits needed to supplement the income that my part time job provided. I was not able to have the much needed rest I needed to recoup from the current flare. By the time my last appointment with this doctor occurred the inflammation in my arm and shoulder were more than obvious. He signed the papers, but it was too late, the damage was done.

The strangest part of this illness is that many times the inflammation does not show up on the tests that are currently recommended for the symptoms displayed. This could be because most doctors test for this illness just as they would for arthritis and look for CPK involvement. (There is now some indication that it could be enzyme activity creating the symptoms and this would not show up as inflammation.)

I knew that the extreme pain and fatigue that I was suffering, were warning signs for me to stop everything and rest, but my physician did not. My pain did not show on the tests that were given and my complaints were not acknowledged.

I usually disguise my extended arm by wearing bulky clothing or by holding my arm folded across my body. My arm will come down somewhat if I do everything perfect (or in other words completely quit working and living) but it has never come down fully since I acquired it. Physiotherapy did not help, and the physiotherapist that I have since seen for it, concludes that it may never come back to me.

I have JO-1 antibodies and this is one of the things that this illness has done to me.

Accept that you are not the same person that you were before you became ill, do not expect your body to follow the same routines that it did when it was healthy, learn who and what you now are. Allow yourself to adapt to the person that you have become. Changing your lifestyle to fit your illness will greatly improve your quality of life.

With inflammatory illnesses never doing too much or too little of any activity seems to reduce the stress or inflammation involved. Living life in bits and pieces, or a little of this and a little of that, might now be a viable lifestyle option to adopt. It will allow you the energy to accomplish a great deal more than you would otherwise be able to, and thereby, improve the overall quality of your life. It also works to reduce the degree of pain that you are forced to exist in.

Remember to budget your energy. Your body is busy using up it's energy resources and there may not be much left over for you to enjoy life with. Fatigue is a natural part of arthritis, the more active your illness, then the more tired that you will likely be.

Budget out your energy reserves like other people budget time or money. First do the things that you must absolutely do. Second do the things that you want to do (which is logical because why would you even want to exist if your life has no rewards). Thirdly and with whatever left over energy is remaining, do the things that you should do but that won't really matter if they get done that day or not.

Finding love, work and identity while coping with a disability can be difficult, but not impossible. When you become disabled your life, and your lifestyle change, but you keep living. Being disabled does not mean that life comes to a stop. Disability whether it is in a mental, or physical form, simply changes how a person will acquire their goals.

A disabled person has the same wants and needs as everyone else in society. They want to have a sufficient enough income to be able to enjoy their life. They want friends to laugh and play with and someone to love. They want to be a viable member of their community and they want the respect of those that they interact with. These are simply basic human needs, and being disabled does not make these necessities of life go away, it simply alters how we will be able to acquire them.

Each person is special, and in their own right, has something of value that they are able to offer to others. When you are disabled it is your knowledge, experience, creativity, kindness, time, or even your ability to be patient that are personal qualities which can be used to help you find love, work, and a personal identity for yourself. Everyone has something that they are able to give. You just have to discover what your unique talents are and then find a means for you to make these desirable qualities work in your favor.

Take the time to discover the resources for disabled persons that are available within your community, or at the State, Provincial, or Federal Government level. Most communities offer special educational, social, and work related opportunities for the disabled. These programs can open doors that you may not even know exist. It will also allow you to communicate with other individuals in the same position as yourself. By joining into a community of your peers, you will be able to learn from their experiences, and they in return can learn from yours.

Be honest in your assessment of your disability. Acknowledge your handicaps but also know your areas of strength. This will enable you to find areas of employment, or social activity, in which you are most likely to be successful. You may not participate or contribute as often, or to the degree that others may be able to, but you will be able to contribute to the best of your abilities. Instead of working a full time, eight hour a day job, you may only work a sedentary job for a four hour shift once a week. Perhaps you will acquire a home based job or learn to work on the internet.

Your disability may prevent you from ever being able to work a full time job, but it should not stop you from being able to contribute something, somewhere. Subsidizing a small disability pension with a part time income can be the difference between just existing and really truly living. Those extra pennies can help you to get out there, enjoy life, and meet new people.

You are the one who is best able to judge your talents. If you are at a loss of where to begin then seek counseling in this area. Local colleges are always willing to provide you with the knowledge and resources for you to head in the right direction. There is always a resource somewhere which can provide you with the answers that you are looking for. It is up to you to reach out and find that help.

Don't just sit at home. Being disabled should not close doors. It should just open new ones. Search out the resources available to you in your community. Join social groups, or clubs, so that you do not shut yourself off from that very necessary social interaction that is so required by us all.

Be honest with yourself, and find areas where you are most likely to succeed, then participate in these. It may take some trial and error to discover your niche areas, but with a little time and patience, you will.

When I first became ill I thought that it was the worst thing that could ever happen to me and thought that I would die alone. Instead here I am 27 years later, married to a wonderful man, and writing this article to you.

http://www.orpha.net

http://rarediseases.info.nih.gov/Antisynthetase_syndrome

http://www.nytimes.com/article

http://www.myositis.org

http://www.arthritis.org

http://www.specialtylabs.com/

When you participate in pleasurable activities like smiling, laughing, exercising or playing, your brain does an amazing thing and releases a little chemical message known as an endorphin.

These endorphins are feel good messages that have the power to actually remove physical and emotional pain. They travel down the spine, and then throughout your body, sending a feeling of well being as they go. These endorphins not only have the ability to relieve pain but they also have the power to make you feel happy. So remember to take time to play - It really is important.

Myositis may change how we live our lives but it does not change how much we appreciate that first glorious cup of coffee in the morning.

Frank's Daily Dermatomyositis Journal" is an amusing look into Frank Smith's world of medication, nurses, and his always enchanting enjoyment of life and living.

Frank is another member of the elite myositis club. He is a gentleman who is a fighter, and a survivor, of Dermatomyositis. Stop by and check out Frank's Daily Dermatomyositis Journal". It's updated often and always a wonderful way to start the day.