Jooly's Joint: people with MS supporting each other

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Ellen, USA USA

EllenIntroduce yourself!

My name is Ellen. I am 47 years old and live in Huntington, West Virginia in the United States.

My motto is: Disabled but not unable.

My hobbies are computers, working on my web page, fiction writing, watching tennis, and anything about I Love Lucy.

When did MS enter your life?

I have been diagnosed with MS since 1982, but it has only been a real demon to me for the past 4 years. I can no longer do the things I used to love as I am wheelchair bound but I refuse to let it defeat me. I am trying to find God's will for me 'in this place'.

What do you now know about MS that you wish you'd known when you were diagnosed?

It's not life-threatening and there is life after diagnosis. You just have to adjust, just like you adjust to anything different that comes your way.

Lowest/highest point in your life with MS

Last November, I really had a physical and emotional crash. I seemed to be getting weaker and weaker. I have been wheelchair bound for a couple of years. I was having a total breakdown. Bladder and bowel problems. The skin on my face and arms was flaking off. I had a massive yeast infection. I couldn't push to a stand anymore so my husband would have to lift my huge body out of bed and put me in a recliner at 7:00 am until he got home at 5:30 pm. I wasn't moving any muscles all day. I could only move the fingers on one hand and couldn't even do that well. I felt my feet were beginning to atrophy.

I called doctors - no appointments for months, voice mails, answering machines, no person to talk to. I started feeling as though I was dying and there was no-one to help.

I finally called someone I knew that was married to a quadraplegic. She told me that I was just so overwhelmed I couldn't think straight, that I needed a family doctor to look at the whole picture and send me to the various specialists I would need.

I contacted a doctor from our local rehab hospital who admitted me immediately. He ran bloodtests, urinal analysis, ekg, x-rays, everything. He put me on solumedrol. He found a unrinary tract infection. I have hypo-thyroid, which was causing the dry skin and constipation. He also found that I have high blood pressure, needed a larger size catheter.

He started me on physical therapy 4 times a day, and a discussion group about depression, stress, humor, joy, fatigue and learning to cope with chronic illness.

When I went into hospital, I went to dinner with the other patients, but where I normally would smile and talk, I just couldn't. I felt as if I was of no use to anyone.

The very first night, the Lord put an elderly lady next to me who could barely see. She couldn't find something she had dropped in her lap and asked me to help her. I was astonished that anyone would ask me for any kind of help, but I could help her do that.

I started sitting next to her at every meal and I would tell her what she had on her plate and where her salt and sugar packets were. I started to smile again. She was all alone and after dinner a nurse would sit her in the lobby and she just sat and stared. When my husband came we would visit her and she would come to life. She says I saved her and I say she saved me!

I stayed 3 weeks, until my urinary and yeast infections and my skin problem had gone.
I'm now on a workable bowel program. I've lost weight, my blood pressure is down, and my MS has calmed down. I can use my hand and arm again, and can push up to a stand and pivot to my wheelchair so I'm not stuck in the recliner all day. I go to outpatient PT twice a week. Life is good again and I praise God for the people He sent me who helped me pull it together.

Please, don't let yourself ever get so bad that you see no hope - I almost did. I thank God He held on to me and I feel alive again.

What do people with MS need to help them enjoy fulfilling lives?

I think everyone needs a purpose. We need to feel that we are able to add something to this world. Once I found a place where I could help others, such as contributing to an MS mailing list, building a web page, etc., I was able to look forward to getting up each day once again.

When and how did you discover Jooly's Joint?

I found it a few years ago using Yahoo.

What keeps you coming back to Jooly's Joint?

The camaraderie of people who understand, and the opportunity to lift up those who are struggling.

What are your ambitions?

To be an inspiration and a help to my family and friends.

What message would you give to newly diagnosed people?

Don't lose hope. Keep on trying to function at the best of your ability in the different stages you may go through, always looking for purpose in this all this.

Remember, you are unique. Only you can reach certain people in this world and it may be that you can reach them because you are in this situation.

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