In 1996 I developed pneumonia. X-rays revealed an abscess in the lower lobe of my right lung. I was still working in the same miserable sweat shop. After diagnosis my doctor said no work. I can't believe how much that abscess hurt. I tried all kinds of positions but was basically reduced to sleeping in my recliner. After a week I was able to sleep for and hour at a time. Slowly the pneumonia cleared. The abscess was still there. After a CAT scan the surgeon said that lobe of my lung had to come out. Surgery was scheduled. I spent the night before the surgery at my moms home and heard her crying at the kitchen sink around 1 AM. When I put my arms around her she said I hadn't had much of a life. It never sunk in that my entire family thought I had lung cancer and that I was going to die. I just remember being embarrassed at the surgeons office. My family and I were viewing the CAT scan and all I was aware of was the soft tissue of my breasts were in full

view. Man...that sucks! I felt naked.

 

The surgery was successfully completed and I awoke to the news that the doctor saw no cancer. I had some odd reactions to the epidural or perhaps the anesthesia. The first night my blood pressure dropped dangerously low.  My doctor was called and he gave orders for a certain med to be given to bring it back up. When I woke up there was the nurse leaning on my bed rails. Had I died I would never have known it.

 

This surgery has not much to do with MS. Except for the bad reaction to the epidural and my difficulty of regaining my strength. Now I had to do it on less lung power as well. I returned to work 6 weeks later on half days for two weeks. That worked well but when I had to return to my normal 10 hour day I did not have the energy to do it. My production started to fall. I kept my nose down to my machine and worked as hard as I could but was unable to continue making my quota on a routine basis. That fact was noted on a routine evaluation. Fatigue was a daily part of my life. When I went to bed, I did not sleep well. Life was a bit hard.

 

In 1997 a one week vacation was scheduled in September. How I looked forward to it. There was a semi long to do list of things I wanted to accomplish around home. The weather was wonderful. I remember climbing up on my step ladder to place a bird proof cover over the range vent. That was the last time I was ever able to confidently climb a ladder. While driving, I noticed my vision was a bit different. The words won't come together for me to describe it. When my vision doubled, that was easy to describe. I couldn't see to walk, watch TV, read, drive, work. Nothing. I did quickly learn that closing one eye returned those abilities. I was torn on what doctor to go to. The decision I made was the worst one I could have done. The local ENT was a wonderful man. He was gold star in bedside manner. After carefully examining my eyes he told me to go home a wait. "These things usually clear up in 6-8 weeks" he said. Patch one eye and go back to work. After 8 weeks had passed with no improvement I called and said it isn't getting any better. I'm getting worse. You must do some thing. At that point he referred me to the local neurologist. Her "follow the pen" test and MRI gave her the diagnosis. She said "you have MS." I cried. She didn't understand why. Her answer was to put me on a whooping dose of Prednizone. And continue working with one eye patched. Driving home at night in the dark with one eye was terrorizing. Going to the grocery store with one eye patched was terrorizing. When people came up on my blind side I skidded sideways. Kids running around the store made me so nervous. And then there is the Preditor Zone demon. Can't forget about him.

 

When the doctor said MS after crying my next reaction was to learn all I could about it. My sister-in-law read her 20+ year old encyclopedia and was sure I was going to die. When I saw my brother the first time after dx, he was laid up in bed with hip surgery and his first question was "what's the prognosis?" I said, I'm not going to die. My sister-in-law looked dubious. In my travels around the Internet looking for information on MS I found The Americans With Disabilities Act. I recognized it immediately as my one ally. My horrible job was very tough on people missing work. Besides not paying us any thing above minimum wage, we were to be there for every shift no matter what. This place had totally inadequate air conditioning. The air was filthy. Thinking about that I now wonder a bit more about that abcess. But no matter now. I smoked at the time so would never have been able to bring a case. The temps topped 90 degrees in the summer. There were a lot of fans around. "Mama Ruth" said "we can't have people passing out from the heat!" So it was tolerable.

 

The big picture. I'm stumbling around with one eye patched, sweating like a pig, on a drug that made me want to kill every person I saw, running behind production and getting lots of time off.  The whispers amongst my coworkers were running rampant.  The sly looks.  They didn't understand why I was getting benefits that none of them were.  They didn't know why my eye was patched.  "Mama Ruth" the plant manager has a niece who has MS.  This was the only time I saw her human side.   They gave me the opportunity to address my coworkers and I happliy jumped in with both feet.

 

What I said in part follows.

 

I am being given a flexilbe work schedule because of a law.  If this company does not work with me, they get in trouble with the law.  I've seen your sly looks and your heads together.  I don't appreciate it because I have MS!  I don't know what tommorrow holds for me.  And I'm on a drug that's making me mean as hell.  So if you've got a question, ask it.  Other wise find some thing else to gossip about because I've got all I can handle right now.

 

My last day of work was Dec 1, 1997.  My Cobra benefits ran for the next 18 months.   I applied for SSDI and was approved on my first application. During this period, I had changed to an MS clinic in Omaha.  The oral steroids did not completely squelch the flair.  Avonex became my first ABC

drug.  Learning to stick a needle in myself once a week was no problem for me.  This doctor administered my first dose of IV Solumedrol.  5 days worth. The first dose was administered in the infusion ward.  I was among cancer patients, many very young.  They were learning to give themselves there own shots.  So very brave.  I came out of there with a totally improved out look on my life.  The final 4 doses a nurse came to my home and gave me the IV's. Her name was Melva.  What a wonderful woman.  It seemed like it took forever for me to start feeling any better.  The double vision was gone. Yet, I was so tired all the time.

 

It's my belief that if the first doctor I went to had sent me for treatment, I would have been able to get back on my feet and continue working.  I was sick from September till November  when I finally got my first Prednizone pill.  It was early January when I got my first IV infusion.

 

During this time, I was penniless.  Had no income at all and was totally unable to work.  I received some help in the form of SSI and Food Stamps. My mother provided the rest to keep a roof over my head.  Patient Assistance plans from the different drug compaines kept my meds coming after my Cobra benefits ran out.

 

I wish I could describe how afraid I was.  I'm single.  I have no care giver I have no friends that are close enough to come by and help me.  They all have their own jobs and families that require their time.  And I'm not the kind that will ask for help.  I've got this "I can do it by myself" chip on my shoulder.  This time, I knew I couldn't.  I had no one to talk to. During this time frame I started moving closer to the God that I had been learning was one of grace and not damnation.  He became a great source of comfort and I gradually learned that all I needed would be provided.

Perhaps this time in my life was designed for me to learn these lessons.  I know that today I have nothing to fear.  My physial body may fail me completely by God won't.

 

This flair started to recede into my good friend history and a new life started to emerge.  One fear remained in the back ground.  For the past two years some thing pretty big had knocked on my door once a year in the fall. So I was holding my breath, always waiting for the other shoe to drop.

 

bad days.  I hesitate using the word ordinary, because with MS there really is no such thing.  Fatigue has always been present.  Appointments and shopping trips were always done early in the mornings as that is when I had the most energy.  A prescription for Provigil gave me a pretty good half day most days.  I stayed in the daily routine I had when still working.  Up by 5:30 AM.  A short nap in the afternoons gave me enough pep to finish the day out.  Nothing more than TV or computer work though.  I was able to be upright.  By 6 PM I had to be in bed because I no longer had the energy to sit up.  A second TV was purchased so I could watch in bed until I was ready to go to sleep by 9 PM.  Housework was done in bits.  After I found an exercise program I could stick with over the long haul I became able to vacuum the entire house in one go.  I made myself a walking stick out of a 4 foot dowel.  I have a cane but just can't seem to work it right.  My stick sets by the door and when I feel the need of it, I take it along.  With my exercise program, I was able to graduate from the electric carts in Walmart to pushing my own cart.  Some thing in the back of mind has always said quietly, what if you get sick again and don't have enough of (fill in the blank)?  So I started to do my major shopping trip when my SS check arrived and then just do fill in trips once weekly over the rest of the month.  That has served me well until recently.  Naps seemed to be no longer needed and I was sitting up in my recliner in the living room until 8 PM or so.  My life with MS was not to darned bad.  There were times when I would be a bit more unsteady on my feet.  I started to wall walk in the house routinely when I walk down the hall.  Before I started my exercise program I fell twice. Always on a rock or some thing because my ankles were very weak.  When I fall, it just ruins my day.  It was hard getting back up with skinned hands. When I would get back in the house I would always cry.  I've only fallen once since and that was due to ice.  Of course, it pissed me off.  I also realize how fortunate I was that I didn't break my ankle because of the way my toe was caught on a flagstone.  I think God was watching.