Life before Myositis
Before being diagnosed with Myositis I was the apithamy of health, many broken bones
over the years ( last one caused by jumping a fence as a short cut) not a wise move at my
age. No illnesses, not even a cold. Never had an aspirin in the cupboard, now I have a
Pharmacy. I was extremely physical in the US Army and a Desert Storm Vet. Proud to say
one of My Daughters is an Iraq Veteran, also US Army. My Husband is a Vietnam Vet,
Marine Corp. Now with Multiple Sclerosis.
I was a Manager in the retail business for 14 years, built 3 million dollar stores for my
Company. Extremely physical and long hours. I went from a full active life to being
handicapped in the short time span of two months.
You won't know me when I am sitting across from you at a dinner table, I can talk, laugh
eat and drink and be one of you.
You may know me when I have to be lifted from my chair and helped on with my coat.
You may then notice that my walk may just not be quite normal for I am keeping my knee's
locked to prevent myself from falling flat on my face and just may waddle a little bit for
stability due to weak legs.
You won't know me when I am out driving.
You would know me if you saw me getting in and out of the vehicle.
You won't know me when I am sitting at a computer or desk working.
You will know me when I try to get up.
You won't know me when I am standing talking to someone.
You will know me when I walk away.
I am one of the fortunate ones who you won't recognise immediately.
For those less fortunate they will be recognised by their walker, their wheelchair, their
scooter or their cane.
They will have problems with their speech.
They will stumble over their words that they know they want to say but it does not come
out.
They forget what they were going to say.
Yet inside they are as normal as you are. Their thoughts, dreams, desires and wants are
the same, their hopes are not, for they know what they have.
They have families and children just like you, they are denied the luxury of fully enjoying the
joys of interaction.
They are denied their independence.
We cannot go shopping into just any store unless we know there is a handicapped
bathroom with high stools and rails on each side to get up from.
We need those shopping carts to give us support while walking.
We need that handicapped parking space.
We need to be understood, not pitied.
We need to be treated as a normal being not a handicapped person, our feeling are the
same as yours.
We will be walking slow to keep our balance, please don't get upset with us.
Until you have walked a mile in our shoes, don't judge us.
We need exposure to get more funding for research to find a reason and a cure for this
disease. If not a cure, a treatment that will benefit us all to put us in remission.
We have no medications dedicated to this disease, many are used for cancer treatments
and Muscular Dystrophy that can shut down many of our other organs and do much
damage.
The disease itself won't kill us but the damage done by wrong medications can. It is like
playing Russian Roulette. We have to trust our Doctors that is why finding the correct one
is so important.
Because of the rarity of this disease, finding a Doctor who is familiar with it is very difficult.
Far too many Patients are mis-diagnosed thus delaying treatment and causing more
problems. It is very important that we listen to our own bodies and know when something
is wrong. There are many forms of this disease including inclusion...body, juvenile
Myositis
Polymyositis, and Dermatomyositis.
There is no age or sex barrier to this disease although it is more predominant in Women.
It also affects babies and children. To those raising children with this my heart and
prayers go out to you.
Many of us lose our jobs due to the inability to perform the functions needed. This puts us
in a position of no income yet we still need to pay our insurance to keep our medical
coverage. Medications are extremely expensive on a monthly basis. We feel lost in the
shuffle trying to get Social Security that takes months to get started with no guarantees. It
is an emotional roller coaster ride with every thing else to deal with on top.
Many of us have never been out of work and it is so hard adjusting to a life with out it.
We all have stories to tell and journals to share. The purpose of this is to bring us all
together in our shared experiences. To learn from each other. If just one person reading
this can relate to any of the symptoms and gets the help they need then this will have been
worth it. Below is the link to come join us and ask questions, get answers. We have a
community forum and chat room. If you are a caregiver, this is for you also. The TMA
website also has a special dedicated to the Juvenile Myositis
Before being diagnosed with Myositis I was the apithamy of health, many broken bones
over the years ( last one caused by jumping a fence as a short cut) not a wise move at my
age. No illnesses, not even a cold. Never had an aspirin in the cupboard, now I have a
Pharmacy. I was extremely physical in the US Army and a Desert Storm Vet. Proud to say
one of My Daughters is an Iraq Veteran, also US Army. My Husband is a Vietnam Vet,
Marine Corp. Now with Multiple Sclerosis.
I was a Manager in the retail business for 14 years, built 3 million dollar stores for my
Company. Extremely physical and long hours. I went from a full active life to being
handicapped in the short time span of two months.
You won't know me when I am sitting across from you at a dinner table, I can talk, laugh
eat and drink and be one of you.
You may know me when I have to be lifted from my chair and helped on with my coat.
You may then notice that my walk may just not be quite normal for I am keeping my knee's
locked to prevent myself from falling flat on my face and just may waddle a little bit for
stability due to weak legs.
You won't know me when I am out driving.
You would know me if you saw me getting in and out of the vehicle.
You won't know me when I am sitting at a computer or desk working.
You will know me when I try to get up.
You won't know me when I am standing talking to someone.
You will know me when I walk away.
I am one of the fortunate ones who you won't recognise immediately.
For those less fortunate they will be recognised by their walker, their wheelchair, their
scooter or their cane.
They will have problems with their speech.
They will stumble over their words that they know they want to say but it does not come
out.
They forget what they were going to say.
Yet inside they are as normal as you are. Their thoughts, dreams, desires and wants are
the same, their hopes are not, for they know what they have.
They have families and children just like you, they are denied the luxury of fully enjoying the
joys of interaction.
They are denied their independence.
We cannot go shopping into just any store unless we know there is a handicapped
bathroom with high stools and rails on each side to get up from.
We need those shopping carts to give us support while walking.
We need that handicapped parking space.
We need to be understood, not pitied.
We need to be treated as a normal being not a handicapped person, our feeling are the
same as yours.
We will be walking slow to keep our balance, please don't get upset with us.
Until you have walked a mile in our shoes, don't judge us.
We need exposure to get more funding for research to find a reason and a cure for this
disease. If not a cure, a treatment that will benefit us all to put us in remission.
We have no medications dedicated to this disease, many are used for cancer treatments
and Muscular Dystrophy that can shut down many of our other organs and do much
damage.
The disease itself won't kill us but the damage done by wrong medications can. It is like
playing Russian Roulette. We have to trust our Doctors that is why finding the correct one
is so important.
Because of the rarity of this disease, finding a Doctor who is familiar with it is very difficult.
Far too many Patients are mis-diagnosed thus delaying treatment and causing more
problems. It is very important that we listen to our own bodies and know when something
is wrong. There are many forms of this disease including inclusion...body, juvenile
Myositis
Polymyositis, and Dermatomyositis.
There is no age or sex barrier to this disease although it is more predominant in Women.
It also affects babies and children. To those raising children with this my heart and
prayers go out to you.
Many of us lose our jobs due to the inability to perform the functions needed. This puts us
in a position of no income yet we still need to pay our insurance to keep our medical
coverage. Medications are extremely expensive on a monthly basis. We feel lost in the
shuffle trying to get Social Security that takes months to get started with no guarantees. It
is an emotional roller coaster ride with every thing else to deal with on top.
Many of us have never been out of work and it is so hard adjusting to a life with out it.
We all have stories to tell and journals to share. The purpose of this is to bring us all
together in our shared experiences. To learn from each other. If just one person reading
this can relate to any of the symptoms and gets the help they need then this will have been
worth it. Below is the link to come join us and ask questions, get answers. We have a
community forum and chat room. If you are a caregiver, this is for you also. The TMA
website also has a special dedicated to the Juvenile Myositis
| Myositis "About us" |
| We are riding on an Angels wings and holding on tight.. |
| worrying is enjoying a crisis that has not happened yet |
| After the Prednisone 40 lb weight gain |
| What is Dermatomyositis? What are the signs and symptoms? Dermatomyositis (DM) affects people of any age or sex, but is found in more women than men. DM is thought to be an autoimmune disease, meaning the body's immune system, which normally fights infections and viruses, does not stop fighting once the infection or virus is gone. The immune system then attacks the body's own normal, healthy tissue through inflammation or swelling of the muscles. DM is the easiest type of myositis to diagnose because of the skin rash. The DM rash looks patchy, dusky, and reddish or purple. It is found on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles. Some people also have hardened bumps under the skin, called calcinosis . The rash is often seen before muscle weakness is felt. The skin rash and weak muscles are caused by inflammation or swelling in the blood vessels under the skin and in the muscles, also called vasculitis Muscle weakness usually happens over a period of days, weeks or months. Patients who have the skin rash but feel no muscle weakness have amyopathic DM, or DM sine myositis. The weakness begins with muscles that are closest to and within the trunk of the body. Neck, hip, back and shoulder muscles are examples. Some DM patients have muscle pain and difficulty swallowing, or dysphagia . |
| How is it treated? Many patients do well with oral prednisone This is a steroid medicine that stops your body from attacking the muscle by slowing down your immune system. If prednisone does not work for you, there are other treatments, including methotrextate Hydroxychloroquine also known as Plaquenil and Cyclosporine. Some DM patients respond to intravenous immunoglobulin a medicine given through a needle for a few hours each time. Your doctor might also want you to do special exercises or a rehabilitation program. Someone will show you how to do the exercises and help you, to make sure that you are doing them right. Talk with your doctor about DM. If you have DM, it is important to start treatment as soon as possible. Patients that are diagnosed and treated quickly have better results. |
| Comments and suggestions are welcome |
| "When you can't sleep don't count sheep, talk to the Shepherd" |
| "We don't want pity, just understanding" |
| A brief biography about me before this disease. |
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