Wednesday, September 19, 2012

Nancy's Family ~ Lyme Disease

Diagnosis ~ Lyme Disease

When I first heard that my 2 year old son had lyme disease I had no idea our journey would take us 14 years back to me.. I had spent years and years back and forth to doctors. I had enough anti depressants thrown at me to open my own pharmacy. The looks and sighs from office staff as I came back over and over. The thoughts even crossed my mind. Am I going nuts? Is this in my head? I was diagnosed with polycystic ovarian syndrome, Celiac disease, hashimotos thyroid, heart disease, borderline lupus.

I was told I would never have children by several " specialists" funny how I view those same specialists now. I met my husband 16 years ago, a very different woman than I am today.

My story seems to mimic many lyme stories.. All of us searching , all of us scared and unsure.. All of us not taken seriously.. Infact the doctor who diagnosed my lyme told me it was not lyme, it again was lupus.. I have a cdc positive test and still dismissed.. My doctor refused to take my calls after that day..

Its criminal.. and a shame and not for me or my husband who now has lyme as well . But for my children.. 2 of my 3 battle this. Given to them from me, congenitally.
How can the children be ignored. Not just mine but the thousands of other lyme kids. Kids who don't know what its like to live without pain. Kids whos daily routine doesn't just includes brushing teeth, and homework but taking pills and pain medication.
Supplements and detoxing.
And that's just if it can be afforded. For us its not about making the choice between treatment or a summer family vacation.. It's about do we pay the electric bill this week or get more supplements. Family fun and vacations are the dreams of our children just out of our reach.

The doubt and distrust that you begin to have for doctors, nurses and medical professionals, is disheartening. The incredible links that you learn exist, between Lyme and other diseases and yet you find such a lack of research and awareness.
The friends that you lose because they do not understand how one day you can cheer on your child in a sports game and then just a day later be in extreme pain , unable to get out of bed.
This disease takes so much from families and its time to be taken seriously.
I do not want to end this on a negative note, I would like to say that my faith keeps me going. The faith that God has created good decent human beings who will take a stand for all the suffering people.. Especially the children. God has truly put some wonderfully amazing people in my life due to Lyme. That is the silver lining in all of this chaos. People that I feel honored to stand with in the fight for Lyme disease. God bless!!


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