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Cyntha L's Story

Letter to Rosie O'donnell describing life with Lyme Disease

Dear Rosie,

I don't know what to say, but that our lives have dramatically changed(for better and for worse). We love each other more than ever. I cannot tell you much about Lyme, since I cannot seem to gather my thoughts very well. More than anything, I know what it has done to us.

My children do not have the Mother they really need. I am often so sick I don't have the patience to play with them as they want or the way I want. Children should grow up with a full and happy life. To make matters worse, I am sure they have Lyme Disease also (From their mother who has given it to them through Utero). Let me tell you about each of my daughters.

Myesha is the oldest by two minutes. She is Celeste's Twin. At birth she weighed 4 lb. 8 oz. On February 14, 1996. She seemed like a normal healthy preemie baby and went home nine days later. But as of today she often gets sick...probably spends most of the month with flu's, colds, belly aches, headaches and plain ache; she also has a cough most of the month. She can get tired easy but at other times of the month you would never know she had problems. She catches things very easily.

Celeste, Myesha's identical twin has more extensive problems. She has Hydrocephalus and Dandy Walker Malformation *Dandy Walker means her fourth ventricle in her brain is enlarged and has a cyst * Hydrocyphalus means she has too much water on the brain. She has two shunts to correct these problems. She was 2 lb. 3 oz. At birth.

she is smaller than her sister because I had pre eclampsia and Twin to Twin Transfusion Syndrome, meaning Myesha received more nutrients and blood supply then her sister, Celeste, who had a smaller cord and was receiving less. She now has a G-tube *feeding tube* because she is listed as a failure to thrive. She now at four years old weighs 23 lb 13 oz. And she gets tired easy and has thus far had thirteen surgeries.

Three for her feeding tube and ten surgeries to fix her shunts. So much more than any little girl should go through. She gets so tired easy and is also sick most of the days in the month. They have missed so much preschool.

Mary is my little red head. She was born one month early at 7 lb. 1 oz. She was so big because I had gestational diabeties. Throughout the pregnancy I was sick almost the whole time. I had an even harder time for me with her pregnancy then I did with the twins. Mary gets sick often also. And whenever she gets done being sick she gets impetigo....she has had so many cases I cannot number them now.

She has a cough most of the month and is 26 lb. At two and a half not too bad, but under weight. I often get accused of not feeding my children, but I try; they don't always eat so well but then who would when they are sick so often? I love them with all my heart, Rosie, and I hate to see them suffer.

What makes things worse is that I cannot get any doctor to listen. I was given the Lyme tests but they came back negative, but then they aren't accurate and the doctors had given it to me after they had given me iv antibiotics for an infection they couldn't find. I have been hospitalized several times...for as long as one week. I suffer continuously with headaches...and more. I want to be a good Mother but many times feel so inadequate, often feeling guilty for my children being sick.

I have been thus far diagnosed with Chronic Fatigue Syndrome and Fibromyalgia, hypothyroid, Gastric Esophogeal Reflux Disease, tachycardia at times....often have fevers. I have also had high blood pressure (Have had seizures, though no cause was found for them). I am now facing possible surgery to fix my reflux problem. I also weigh 241 lb., and have gained it fast. I wouldn't say it is from being pregnant since I lost a lot while I was pregnant (As a matter of fact doctors were always chewing me out).

As I am writing this I am forming a migraine..but partly this could also have been brought on by my dogs death this morning. I ache from head to toe. I am dealing with ulcers. I know I sound like a psych case, but really I am generally a happy person....well at least 'till I got sick. Who wouldn't get depressed when they are sick a lot?

Anyway Rosie, my plea to you is for the children; all children who have Lyme Disease. This should not be so..their cries should not go unheard. They deserve more. I can handle this because I understand. My children do not. And for this they should not suffer. I hate seeing any child suffer. And I know you do too.

Please, I know you are busy with many charities, but please help people be aware of this disease and what it does to families. If you could do this it would mean so much to me, and perhaps doctors will start listening. Celeste has been tested for Lyme Disease (of course the tests are not accurate and they wouldn't even test any of my other children....what arrogance there is in this world).

Thank you for listening and I wish I could say more and impress it upon your mind. Thank you for all the help you have given people, whatever it be for. Breast Cancer, abuse and so much more. Thanks....

Love,

Cyntha Fay Landon

From Shelley, Idaho USA 83274

1163 N 1340 E

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