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Divorced Mother With Limb Girdle Muscular Dystrophy Seeks Grant For Healthier Home

by Elaine
(Redding, California, USA)

My son and I

My son and I

My Name is Elaine. I am 36 years old and now a disabled, single, divorced mother of a loving 5-year-old son after a 16-year verbally and physically abusive marriage.

My father, sister and I were born with Limb Girdle Muscular Dystrophy, Congenital Fiber Type Disproportion. This causes severe pain and progressive weakness in the muscles.

Due to the severity of my Disease I also have drop foot in both feet, which now with increased weakness makes it very difficult for me to walk very far.

Scoliosis in my spine causes a great deal of pain when sitting, standing or lying down.

I am at this time unwilling to use strong pain management and instead try to live a healthy life style.

I have always made sure to keep a positive attitude even while enduring not so positive times.

As a young child up to adulthood, I received SSI payments which were helpful but mentally very unchallenging.

I felt my overall physical health was manageable and so at the age of 29 I decided I needed and wanted a career.

I was able to receive a government student loan and went back to school to become a Medical Assistant.

I graduated with a 4.0, made Student Ambassador and was hired immediately by the medical group I did my internship with.

February of 2004 was the beginning of a new life for me. I was hired by the Local Regional Medical Center. I finally had a career I loved and excelled in.

Then in April of 2004 I found out I was pregnant, after 10 years of marriage. Having already accepted the medical fact that I would be unable to have children, this was a scary but wonderful surprise.

Sadly, all these changes were not accepted well by my husband. He has a diagnosis of ADHD, Bipolar, PTSD, and chronic depression.

Before this turn of events, together with medication, patience and my belief that a marriage should never be broken, we made the best of it.

I was able to work through my pregnancy, thankfully no complications, until the delivery.

Because of the muscle disorder I was unable to give natural birth to my amazing and healthy son and had to undergo an emergency cesarean.

The first months after the birth of our beautiful son, things were well. Then my husband wrecked his company log truck and his depression escalated.

He started to drink and abuse his prescription medications and quit his job. I began to work full time instead of part time, to allow my husband time to get back on track.

To my dismay things begin to turn from bad to worse and the verbal abuse was now worse than ever, and the physical abuse began.

The winter of 2006, my son and I left with nothing but the clothes we were wearing: no diapers, or even our shoes.

I had to call my father and stand outside waiting for fear of not making it back out if I went back into my house, for my husband was on a terrible rampage.

I stayed with my parents for about 3 weeks and was able to find a small apartment near my work and a small used car.

After about six months, my husband convinced me that he was a changed man and learned how important his family was and what a great mistake he had made and asked to come home.

He agreed NO Alcohol or misuse of prescriptions were allowed and he needed at least to get a part time job to contribute to the family.

Unfortunately, the new and improved quickly crumbled. Within that time, we moved into a new house hoping that we would restimulate a desire to continue fighting for our family.

I continued to work full time, as he was also able to find a full time job, but the alcohol overtook his good judgment, and the nightmare of the abuse began again.

In March of 2008 he abandoned my son and me, emptied our checking account, maxed out our credit cards and ruined our credit.

We did not hear from him for many weeks. One night he walked in the house in an unknown drugged state of mind, threatening to shoot our family.

My father and I were able to talk him into going to mental health for evaluation. They kept him for 72 hours were he promised to begin counseling and change his ways.

My love and commitment to my family allowed him back into our bruised and insecure life that expectably was short-lived.

July of 2008, I had to leave again. October of 2008 he came to visit, and became irate that I could tell he was drinking.

I asked him to leave. He began to push me and throw rocks at my face. Thankfully, my sister was there.

We were able to call 911. He ran into my bathroom and took a razor and slit his wrists, running around the house in front of our son allowing blood to drip everywhere.

The police and ambulance had to forcefully remove him from the house, while my son hid in the bedroom.

He was sent to a Hospital in Sacramento for a week. During that time I filed a emergency restraining order which the judge granted for 5 years and full custody of our son.

I myself finally accepted counseling. After the emotional turmoil of the situation I began to have episodes of severe upper respiratory infections and overall body weakness and pain, but I attributed it all to stress, the past physical abuse and overworking.

My husband was released from the hospital and began to harass me with threatening phone calls and allowing his girlfriend to call and threaten and harass me. At that time I filed for divorce, due to infidelity.

In April of 2009 I received an opportunity to leave the area and move about 400 miles away in Northern California to allow my son and I a new start and be near family.

After a month of rest I was quickly able to find a great medical position and was able to rent a small older house near my place of employment.

I began to notice an increase of pain in my joints and several occurrences of respiratory infections.

In November I broke out with shingles. January 2010 my son contracted H1N1 and we both got pneumonia.

It was all I could do to muster the strength I needed to work my 5-day 40-50 hour week and then sleep the whole weekend.

My sister and her daughter had to move in with me because my illnesses had begun to last longer and become more severe.

March 2010 I collapsed and was unable to return to work, My immune system began to attack the weakest parts of my body which were my muscles due to the M. D. and CFTDP.

I was sent to an immunologist and specialist who informed my family and me there really wasn't much they were able to do but try to keep me comfortable.

This isn't a fatal disease, just a progressive uncomfortable one.

I began to lose all strength in my lower limbs and needed assistance from my bed to my couch and will sleep for many hours of the day.

My Medical Doctor filed a claim for SSDI which is in process but they are extremely backlogged.

I am blessed to have loving family support. My sister has been my sole caretaker along with the support of our parents. Happily, I can say I do have some good days in between the bad ones now.

March of 2010 my divorce was final, for which I was granted sole physical custody of our son with no visitations allowed from the father. There's no financial support from my ex-husband because he does not work.

My sister, her 14-year-old daughter and my son and I all live in a very old and small 2-bedroom house. We just found out that it has a very uncontrolled problem of mold throughout.

We are now living on a very limited income. We live simply and attempt to manage our money wisely.

This week we were offered to rent a new home only 5 years old. It has 3 bedrooms: a room for my sister and me to share and each child will have their own room.

The most important part: NO MOLD!!! I am sure this will be a great benefit to all of our health.

The landlord was kind to adjust the rent so we may be able to just make it. I have signed up for HUD assistance but there is a 4-year waiting list.

But, to add to my dilemma my 97 Chevy Malibu that I bought in April with only 87K miles blew the motor today. This takes any leftover savings intended to go towards a deposit for the new house. They say when it rains, it pours.

I understand these are hard and difficult times we live in and many are suffering and enduring trails that are felt unbearable to them.

I do not feel that I am any better or deserve any more assistance than the next person or family.

We would definitely be eternally grateful for any assistance a kind heart would be able to bestow upon us to allow the opportunity into a healthy home.

My son would have his own room. And there would be ability for the access of a wheelchair in the future. A safe and happy place we could call home!

Thank you so much for taking the time and the consideration to read this letter.


Elaine and Family

Comments for Divorced Mother With Limb Girdle Muscular Dystrophy Seeks Grant For Healthier Home

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Apr 21, 2016
by: Anonymous

Very sorry to hear your story, I'm a nursing student and was searching for "Limb-girdle" and your story came across, I see that it's been a few years since you posted your story. I hope you and your son are doing well or at least comfortable. Try to seek help from the state, I know some people don't agree with it, but if you need it, you can benefit from it, especially because of your little one. I'm also a mother and understand how hard this must be for you. God bless you and your son.

Sep 20, 2011
by: Anonymous

You know how strong you are...
I think you walk hardly... but I believe you can fly.

Mar 23, 2011
I understand...
by: Anonymous

I had back surgery that left me with one drop foot. I admire you so much. I now am putting up with verbal abuse from my husband. How did you get out, as I do not have the family support you have? God Bless you and your beautiful son.

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