BACK Foundation, Inc.
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Faces of Pain - Lee's Story

 (AKA Wicked Butterfly)

I used to think my life was pretty simple. My role in my family was peacemaker, caretaker and lots of times scapegoat. That was normal to me. Little did I know that there would come a time when that “normality” was going to be the death of me.

I would work 3 jobs just to get by, didn’t have the best of instincts when it came to picking men. I was constantly on the go go go. I moved all the time. Just never could stay still. I was abused sexually as a child and to this day still have night terrors even though I’ve consistently gone to therapy finally for the last year and a half. I’ve traveled in some tough circles, had a major motorcycle accident and was a fingers click away from getting my ticket on Flight 175 out of Logan Airport in Boston to LAX. I still suffer from survivors guilt. That close call affected me deeply.

In 2002 I was diagnosed with fibromyalgia, ptsd, anxiety, ibs, depression. I was feeling like a real failure in life. But I refused to give in. My doctor told me that the worse thing I could do was stop moving. Exercise, eat well, etc…… I was determined to keep going. I’ve run into some doctors over the last 8 years that have told me that there was no such thing as fibromyalgia, cfs. That it was all in my head. I promptly would get a new doctor or therapist.

I’ve been either on a search for a doctor to believe me or no doctor at all during lapses of no health insurance because I couldn’t afford to have it taken from my paychecks. I went many years living on aspirin and in intense pain.

Finally, in 2004 I got married to my best friend who would do whatever he could to help me, learn what he needed to know so that he could understand what I was going through. At the same time, I was offered a chance to go to school to become certified as a Canine Education Instructor. I couldn’t pass it up. We still couldn’t afford health insurance or when we had it, the co-payments, but I muddled, limped, sometimes cried and worked my way through the pain.

But things were getting worse. I had terrible endometriosis which then turned to fibroid tumors so bad that I had to have a complete (radical) hysterectomy. Then a year later my appendix burst which resulted in a portion of my colon being necrotic and having to be removed. My breathing was getting so bad that for the first time in 20 years I was having asthma attacks one after another. I eventually was diagnosed with COPD w/severe Asthma and Bronchitis. I didn’t even know that they were not the same thing. Also not good when I’m in a yard with over 30 dogs and trying to wrestle a little dog away from a big shepherd. Then I was admitted to the hospital with what felt like at the time, a heart attack. My fibro was getting to the point that I was literally unable to move some days and I always get high fevers whenever I had a flare-up. Needless to say I had to leave my job because I could no longer continue my duties.

My last day was so hard as I had become close with my boss and the team I worked with (still am to this day) and most especially the animals I worked with. Finally I had to go to the state for health insurance help.

I got together a team of doctors who I trust. Also, my husband and I moved to be closer to his work because I no longer could work. We were in this city which we hate for 6 months and the company he worked for went bankrupt. We were stressed not only over our financial troubles but also I was exhibiting signs of limited mobility, I was stuttering something awful, shaking like no tomorrow. I was being tested for MS, onslaught of Alzheimer’s due to my severe short term memory losses. I was becoming incontinent, and just scared because all my MRI’s, EEG’s, EKG’s, memory testing were showing no signs of an abnormalities.

But I know I wasn’t crazy! I could FEEL that something was wrong with my body, I could FEEL the pains in my head.

Two days after my husband got laid off we had spent the morning food shopping and refilling a couple of my prescriptions. I was sitting down in the living room putting my pills in my daily pill containers when the next thing I know, I was looking at my floor covered with crushed pills, men in my living room calling my name and my poor husband in the background looking terrified. I remember the first thing I heard was “yes, she wet herself. Common with grand mal seizures”. And that seizure really got the ball rolling.

Since then, my neurologist found a small abnormality when I had an ambulatory EEG. I had x-rays of my neck which caused him to send me for MRI where it was discovered I have Myleopathic Cervical DDD. Also, forgive me if I get this wrong as my memory is not the best and my husband or someone always have to go into my doctors with me, something about the nerves in my spinal cord being affected. I was also told I had a vitamin D deficiency and I’ll most likely be on supplements for that the rest of my life. Just another pill.

Within a week of that I was hospitalized for surgery and had a cadaver bone and some from my hip inserted into my c5-c6 along with a steel plate and screws.

But, as usual I have to save the world.

I’ve had no recovery as 2 days out of the hospital, my youngest daughter was hospitalized for a suicide attempt. Then after about 3 weeks of dealing with that, I found that my best friend of 40 years was having a nervous breakdown and abusing her 16 year old daughter both sexually, mentally and emotionally. She lost her 8 year old child with Down’s Syndrome to the state and I got the 16 year old. Once again, the caretaker, peacemaker dealing with my best friend’s care, my daughter’s care, trying to be there for my oldest daughter who has an 8 year old autistic son and she is constantly stressed out and needs reassurance. My parents are ill and I’m their only child and I live over an hour from everyone we know so I’m frustrated that I’m of no use to them.

My husband had gotten a new job as an OTR trucker but has decided recently to get something local so as to help me out more. I feel as if I am regressing from the lack of recovery time and my doctor reaffirmed that not to long ago.

But, thru all the pain, tears and terrors, I am still going. Once again raising a teenager. I have a Boston Terrier who is a natural alerter and is my seizure alert dog. Not to mention the comfort I get when I am incredibly stressed. Another little gift I have been diagnosed with is OCD because I am home so often and I obsess over everything. I can’t drive because of my seizures and I feel helpless and locked down. Most of the most serious of all my diagnosis’ have been during the last 2 years.

My therapist tells me I can’t save the world. My husband gets upset because I keep trying to help people at the risk of my own health.

I just have to be who I am. I love them. And I know that when it comes down to it, I will make a difference.

I refuse to let it beat me.

I’m only 51 and I’ve too much more to do



Love & Light,