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Mariah's Story

"Something's bugging me, or it's not easy being green, or my life with Lyme..."

In the beginning....before I was 18 years old.....before Lyme...I was active.....could bike 30 miles a day .....could hike for hours at a good grades.....sang......babysat.....was busy.....

In 1974 I went away to college. I was almost 18. My major was special education but the joke was that I minored in hiking. My dorm bordered on a large field and my nightly ritual was to count how many deer were out there staring at my lit window....Usually there were dozens....silent.....still.....innocent looking (what did I know....) Beyond the field were enchanted forest......and I spent as much time there as I could...

During my second semester freshman year I was diagnosed as having mono.....(had all the symptoms.....fever...fatigue....) My symptoms only worsened, and after several months of treatment, I was told I no longer had mono .....and thus began my endless wait to feel like my old self again.

Headaches......constant knife stabbing....head splitting....pain....I felt like a steam roller had flattened me.....was too tired to hold my head up....almost constant nausea....aching knees and hips and wrists and ribs and neck and ankles....mental fog....confusion....disoriented...forgetfulness...sensitive to light......daytime was painfully bright....flourescent lights made me lose my ability to walk, hold my head up, speak, think......I was scared and depressed....I was 18....and this is where I began my long search for an explainable label......what was happening to me? I felt like I was going to die.

Many years
Many tests

Discovered hypoglycemia....

Treatment: change in diet

Results: had all of the above symptoms but now had a blood sugar level

of 97....

4 years of college

4 years of desperate searching for answers

4 years of doctors/tests

4 years of being told there was nothing wrong with me

4 years of waves of depression alternating with determination

4 years of absolute struggle

4 years of splitting headaches

4 years of not knowing if I would be able to walk when I woke up

4 years of falling asleep everywhere/anytime

4 years of being told it was all in my head

4 years of being told I just wanted attention

4 years of feeling so alone

4 years of wondering if I would wake up in the morning

4 years with no social life (my life was study or sleep)

I graduated in 1978...with a 3.65 GPA......this was due to my sheer terror that if I stopped believing/dreaming/hoping in my future..I would die....

I had a teaching job before I graduated from college. I loved my class....loved teaching....but I was not used to being awake for 8 straight hours......I survived college taking many I struggled thru my teaching afternoons.....created story time.....quiet art time.....I would drag home at 4PM..sleep until dinner...then sleep until morning.....weekends were for lesson plans....IEPs.....progress life was work and sleep.

Friends set me up on a date with another friend over the winter break.....we fell in married in 1980....and I moved to NJ (where he lived).....tried to get a teaching job but worried if I was able....

Got pregnant
Lost the baby at 4 months

I knew something was desperately wrong with me.....searched again...changed diet again....took vitamins....went for counseling.....went to specialists, and in the end......according to all the doctors, I was the picture of health....(maybe I am crazy.....I began to doesn't really matter because I am going to die....)

We had a child in 1982......was easy to blame all yucky feelings on being pregnant......nursing baby fatigue.....and my rationalization that all pains/headaches came from not getting enough sleep......

Money was tight.....I knew I was not well enough to teach all day ....I was already staying home all day being a mom......I had these skills/gifts to reach handicapped why not be a foster mom to a developmentally challenged child? Barry is now 20......he has been a part of this family for 15 was here that Barry learned to sit up, walk, feed himself, trust, feel safety gifts were being used......the state gave us money for Barry (like child support)....

Over the next 5 years our family grew.....we had 2 more children....and we took in another foster child...5 kids below the mental age of 5....4 kids in diapers.....but I could lie on the couch with them and tell stories....sing songs....and when they napped so did I.....and when my energy was up I raced around......I was used to this pattern of survival began in college....somewhere about this time I lost a sense of what it was like to be normal.....pain/fatigue/brain fog were my normal.

Of course you feel tired

Well, arthritis runs in the family

Migraines run in the family

About every 2 years something would stab my soul,,,,would say you don't need to suffer like this and I would search again (this became harder and harder to do because my husband didn't believe me/ didn't understand how sick I felt/ felt my illness was my way of controlling him....)

In 1990 my marriage began to fall apart

In 1992 we separated

In 1994 we divorced

Now as a single mother I felt pressure from family court to get a job. In fact I was ordered to get a job. My ex husband filed charges against me 3 times (in less than 1 year) saying I was, not in good faith, trying to get a job. He thought I should go back to teaching full time. I knew I was not well I had 5 kids, 3 different school calendars, 1 child still in half day I worked part time at the kids gymnastics school. My youngest came to work with me every afternoon. They all came to work with me on Saturdays and when they had days off. I was getting minimum wage.

At the same time, my daughter was diagnosed with Lyme (since she was 2 years old I knew there was something wrong with her). We went through waves of doctors and searching and waves of just trying to cope and accept things. In 1993 she had a picc line inserted and she started 23 hours a day IV infusion of Claforan. She was on IV for 2 months. We had lots of problems with the insurance company not wanting to pay for IV treatment.

I did a lot of reading about Lyme. As I read, I realized that it all sounded way too familiar. I had 3 blood tests done for Lyme disease. They all came back positive. I was relieved to have a diagnosis. I started with oral antibiotics. I did combinations of oral antibiotics. I did IM (intermuscular) injections of antibiotics. Finally I went on IV therapy. Claforan infusion through a picc line inserted in my arm 23 hours a day for 3 months. We stopped the IV therapy because my insurance refused to pay any more.

At this time I was paying almost $400 a month for my own health insurance as my Cobra plan, plus the portions that were not covered by insurance (plus by this time my sons were also diagnosed and being treated for Lyme as well as my daughter). All 4 of us were being treated for Lyme.

Finally had my diagnosis, but my ex husband thought I was using it to make him pay more child support. I never asked for more money. He has to pay a certain percentage of his income toward child support. It really had nothing to do with how much money I make or don't make.

During the next 2 years (1994-1996), I was hospitalized 4 times because of my Lyme disease. I had spinal taps, EEGs, EKGs, MRIs, SPECT scans...... On my first time in the hospital they inserted a VAD (venus access device) into my chest because I had no good vein left to put another picc line in. I did IV therapy again,,,,claforan....til my body became allergic to it.....each time I left the hospital I left on home IV infusion therapy.....I infused penicillin, rocephan, vancomycin (I became allergic to every antibiotic they tried). Each time was a fight with the insurance company to pay for treatment. My cobra insurance ran out by the time I was hospitalized for the last time. I am now filing for bankruptcy because of all my medical debt since then.

My surrogate brother saw me struggling physically, financially, and emotionally. He got all the paper work and helped me fill out all the forms to apply for SSI/disability....This was in April of 1996. I have been too sick to work. I/we have been living on the child support checks I get for my children. Too many months we don't have money for the basics...never mind shoes.....I feel such shame in using my children's child support payments to survive. I have not been able to contribute financially to my families' survival.

SSI told me I made too much money. I got a lawyer. We went to court. The judge ruled that I was indeed financially eligible for SSI. This took a year to accomplish. Then SSI sent me to 3 different doctors to get information to help them decide whether or not I was disabled. After another year of appointments and providing more and more and more documentation.... SSI determined that I am disabled. This is not something that makes me happy. Who would be elated at the age of 41 to be told they have a permanent disability. I did feel a sigh of relief because I felt that at least now I would be getting some wouldn't be such a financial struggle. SSI is awarding me $95 a month.

So tired of the fight

95 doesn't even pay for 1 week of food for a family with 5 growing children......

$95 doesn't even pay my monthly gas and electric bill

I am trying to keep my family together. I have the best children in the whole world. I can't change the fact that I have Lyme disease. Where do I go for help? How do I get some help. ????????????

If you have indeed read this far, I thank you. I need to keep fighting but right now my hands are swollen, I have a splitting headache, I have double vision, my brain feels all foggy, my ribs and ankles are throbbing and I am so tired......

Mariah Lee

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