Hi Everyone,
Most of you know some of what has been going on in my life these past couple months, and some of you know most of what has been going on this past week, so I’m emailing all of my friends, family, and acquaintances to get everyone current. This is a long letter, but please find the time to read it; what I’m sharing with you could save someone’s life.
For starters, I’m 24 years old, and I contracted Lyme Disease at age 8, so I’ve had it for 2/3 of my life.
Most people, including NJ, NY, and CT residents (the 3 states with highest Lyme infections), aren’t aware of any Lyme Disease symptoms past Stage 1 – the achiness, arthritis, fatigue, flue like symptoms, the Bulls eye rash, etc. These symptoms are “the norm” for someone who has only had Lyme Disease for less than 6 months. Once Lyme Disease progresses into Stage 2 and Stage 3 (I have Stage 3), it begins to effect one’s organs, eyesight, nervous system, brain — anything the spirochete (which is the little screw-shaped bacterium that causes the disease) can get itself into. When left untreated, patients have died because of the complications caused by Lyme Disease.
Diagnosing Lyme Disease is also a “touchy” subject once the patient leaves Stage 1. In Stage 1, a blood test will semi-accurately report if the patient has spirochetes in their blood system or not, so getting diagnosed (and then consequently treated) is still uncomplicated in the first six months. Things change after Stage 1.
Starting with Stage 2, the spirochete LEAVES the blood stream and enters the organs, etc, so when blood tests are drawn to check for Lyme activity, they are highly inaccurate. Many people with active Lyme Disease are turned away with a negative test result and no treatment.
Growing up, my father was a minister, and his passion was starting churches and going into struggling churches and helping them reorganize and grow. One of these churches was located in Milmay NJ, which pretty much consisted of big houses in the woods.
Milmay was over an hour from where we lived, so we would end up spending the entire day Sunday with parishioners between the morning and evening services. I was always a bit of a tomboy, and I enjoyed Sunday afternoons playing outside in the woods with my lifelong canine companion and best friend, Mandy.
One day, when I was 8 years old, my mother and father found close to about 40 “baby” ticks across my back and in my hair, and well over 50 “baby” ticks on Mandy. My mother and father spent hours picking these tiny ticks off of me and Mandy, and they also found a few on my sister and brother. The assumption was we must have ran into a nest of baby ticks, so we all got cleaned up, and the incident was soon forgotten.
A couple months later, Mandy – who still ran and played like a puppy at the age of 16 (human/actual) years — started limping. We saw arthritis develop quickly, and her appetite left. She started looking like an old dog. Mandy’s legs would give out from under her, and she wasn’t able to run around the back yard like she always had.
Mandy fell down in the kitchen one night, and when we went down the next morning, she was in the same position. I had to go to school, but when I came home I found Mandy hadn’t gotten up yet and my mom was crying. My mom told me that Mandy was very sad and sick, and she wasn’t going to walk again. She said Mandy had loved us for years, and now we had to return that love and make her pain go away by putting her to sleep. My family all said our goodbyes to her, and we took Mandy to the vet and she died that day. (It wasn’t until years later that we learned dogs can get Lyme Disease too, but unlike human cases, dogs can be treated and cured with a very high success rate. That news only compounded the loss of my canine friend, and over 10 years later I still feel sad thinking if we only knew more then, we could have had her around longer. I still miss her.)
Not too much time passed before everyone in my family was plagued by different ailments. My older sister’s shoulder hurt and was swollen, and she couldn’t move it much. She got Strep Throat 15 times within a calendar year. My kid brother took too many naps for a boy his age, and his emotional state went up and down like a roller coaster. My dad, an educated and intelligent man with his Masters degree, couldn’t remember things, and was stopping mid-sentence because he couldn’t remember the rest of what he wanted to say. My mom would spend days on the couch crying, saying her whole body hurt like all her nerves were on top of her skin. Both of my parents started using canes because of severe arthritis pain. I had the bulls eye rash, and I was always so tired that I started napping for hours on end, and I also started losing my eyesight.
One day my mom was watching Sally Jesse Raphael, and her guests were discussing this little-known-about illness Lyme Disease. Each guest had a different complaint. One man talked about problems with his shoulder, which was something Cyndi was suffering with. An otherwise young man talked of how his arthritis pain was so bad he couldn’t get around without a cane, which both my mom and dad could relate to. One distraught mother was crying sharing her story of her young children having no energy, which my mom saw in Joey and me. They showed a picture of the Bullseye Rash, and my mom remembered seeing that on me over a year ago. When Sally asked her guests how they got this awful disease, they replied deer ticks, and showed pictures of what my mother recognized to be the “baby ticks” from over a year ago in Milmay.
My mother started calling doctors, asking if they knew about Lyme Disease and could they help us. We’d see a different doctor every night, and every night the doctors would tell her an entire family of 5 couldn’t get Lyme Disease, this was absurd, we are a bunch of hysterical hypochondriacs. Night after night, doctor after doctor, month after month, my mother searched for someone to help us.
We eventually found an arthritis specialist who was semi-familiar with Lyme Disease, and she diagnosed all 5 of us and started us on IV medications. It was hard to do the treatments, especially for my brother Joey and me because we were still kids, and it seemed like one of us was always somehow knocking the IV out our arm and having to get restuck again.
After 3 weeks of IV medication, things started looking up. Our afternoon naps started disappearing, and my mom and dad could walk without canes. Things seemed to be going back to normal, and we felt good for a period of 6 months. Each of us started feeling something different again, but my mother recognized our health started declining again at the same time, so she took us back to the arthritis doctor, and we did another round of IV treatments for 3 weeks each.
My brother, sister, and mother all seemed to feel healthy again after the second round of treatments, but my father and I both said we noticed an improvement, but didn’t feel back to normal yet. A year or so passed, and although nothing improved, nothing got worse.
My dad’s mind started to go again, and it was deteriorating in such a way that sometimes he didn’t even recognize us. On a good day, he’d have trouble piecing together a sentence, and he couldn’t always get the words out of his mouth. He was no longer able to work, and my mother took him back to the arthritis doctor, who said she was sorry, but this was not Lyme Disease, and she couldn’t help us.
My eyesight started going again around the same time; I’d often sit in the dark, and when my mother asked why I didn’t turn the lights on, I’d reply I couldn’t tell if they were on or off, everything looked dark to me. My mind also started to slip, and I’d get very frustrated not being able to get words out, or when I would speak, the words would be jumbled and I wasn’t understandable.
My mother started another long trek, doctor to doctor night after night begging for help, and again she was told there was nothing wrong with my father or me. Many doctors implied my father simply wasn’t the educated and intelligent man my mother described him to be, and I was pretending to have similar symptoms to my father had because I thought it was “cool”. My mom spent many days crying from despair at the kitchen table, and many nights taking us to different doctors.
My mother found a neurologist that recognized my father was in Stage 3 of Lyme Disease, and that his symptoms were due to his brain being swollen. My father was started on an IV treatment with medication that helped the brain, and he slowly began to feel relief and resemble his old self. The neurologist didn’t want to treat me because of my young age, but instructed my mother to take me to pediatric neurologists until she found one familiar with Stage 3 Lyme.
I was still a young girl when all this was happening — barely a teenager, when the newspaper headlines reported the first Lyme Disease casualty. Her name was Amanda, she lived in NJ, and she was 12 years old, like me. (http://www.angelfire.com/planet/lymedisease/Lyme/Schmidt.html) I can’t even begin to explain the fear that set in for me; it never occurred to me that I could die, especially since I was just a kid and kids don’t die. Depression started setting in for me, and it deepened with each “NO” we would get in our quest to find someone to treat me.
At age 13, my vision was so bad, I was very close to being declared legally blind. My mother took me to Hanneman Hospital in Philadelphia, and I had eye surgery to correct the weakened muscles in my eyes. It worked, I could see again. We were still looking for a doctor to treat me for my Stage 3 symptoms, and simply prayed we’d find that doctor before I lost my eyesight again.
Physically, I was tired. I had arthritis again, I was taking naps again, I was having a hard time comprehending things and communicating, and I just had eye surgery to prevent (or at least slow down) my going blind. It seemed like we’d never find a doctor to help me, and I was so afraid I was going to die like Amanda died. My father was still seriously ill, even though he was being treated, he wasn’t the “strong Daddy” and “safe Daddy” I had grown up knowing; he was a man who had prematurely aged and would hurl something across the room out of frustration of his circumstances and his self-perceived failures. I still prayed to God, but my prayers were more begging for Him to show mercy and take me in my sleep so I didn’t have to suffer anymore. My depression deepened each morning that I’d wake up and had to face another day of who-knows-what. My mother noticed my emotional pain, and took me to a psychiatrist who diagnosed me with being Borderline Anorexia. He explained to my mom that she had caught my distress in enough time to catch this before I fully developed Anorexia, and that this disorder develops out of feelings of desperation and lack of control over one’s life. My mom said she could certainly understand why I’d have those feelings, but I was no longer allowed to “eat in my room”, etc, and it never developed beyond Borderline.
We still searched for pediatric neurologists and doctors who could help me, and my mother even had a news reporter come to the house so she could discuss my father’s situation and my situation and the family’s financial situation and beg the public for help. The reporter assured my mom he’d run the piece with the evening news, and he hoped we could get the help we needed.
Things just got to be too rough for me — life was too scary and uncertain for a very ill 13-year old who was losing hope — and I had a nervous breakdown. I don’t know if the proper medical term is comatose or catatonic, but my body would just lay still and I found a way to emotionally not be present, even though I was not asleep. I’d spend hours on end in this trance-like state, and the hospital doctors were torn between whether this trance was because of physical illness or emotional pain.
I was in Children’s Hospital for my 14th birthday as well as for when the news story was run on TV. The reporter mentioned something about “Kelly is currently in CHOP in Philadelphia” as a closing note, and things changed for me. A doctor called the hospital wanting to speak to my mother, and she told my mother that her entire medical practice was Lyme Disease patients, and she wanted to help me and my family. I remember my mother sitting beside me crying, telling me things were going to be okay now, someone on the phone wanted to talk to me. She introduced herself as Dr. DeMarco, and she told me she believed I had Stage 3 Lyme and that she wanted to make me feel better. I responded I simply didn’t want to die in the hospital, I wanted to go home, and she told me to trust her and not lose hope yet; if I could hold on until I saw her she wouldn’t let me die.
My mother signed me out of CHOP, and I think it was only 2 days later my family was meeting with Dr. DeMarco. I didn’t like doctors, I thought they were a bunch of mean uncaring people, but I warmed up to her quickly because she seemed so confident that I was telling the truth about how sick I felt. She seemed like she was emotionally involved with her patients, like she genuinely cared. She took over my father’s IV treatments and started me on mine.
My Lyme Disease symptoms would regress and come back, and the IV treatment actually made my symptoms worse for a few weeks before I began to feel relief. The victories were small, and I was learning that my arthritis might not ever go away even after the Lyme was cured, it might be permanent damage. Dr. DeMarco was able to stabilize my health, and even though I was not a healthy person, it was also apparent I wasn’t terminally ill.
I was on the IV treatments for about 4 months, and then I had to stop them because my white blood cell count started dropping. I continued on oral antibiotics and saw Dr. DeMarco on a weekly basis from 8th grade the 12th grade. I also spent the majority of those 5 years on homebound instruction so I could rest as much as possible, and because I wasn’t able to sit through class after class with the way my brain now worked (or didn’t work). I’d try going each year, but would end up on home bound within a couple weeks.
The school district sent teachers to the house to continue my education, and one of my teachers was very interested in my family’s story. She brought a magazine article with her one day that spoke of a contest for readers to submit stories of their life’s struggles and how they coped. My mom was hesitant about entering, but there was a small cash prize that would have come in handy (we were beyond poor), so she submitted her story and waited.
She didn’t have to wait long. Ladies’ Home Journal contacted my mother and told her they didn’t want to use my mom’s submission for the contest, they instead wanted her to expand on it and it would be a featured article! The pay was also close to 10 times the contest prize money, so my mom and my teacher worked together for hours at a time to get my mother’s/family’s story on paper. (https://archive.org/stream/ladieshomejourna111julwye#page/n27/mode/2up)
I was a teenager when the article was published, and I was horrified at the thought that people might see my picture in the magazine and recognize me, and then they’d know I was “weird”. We were contacted regularly for a few years after that magazine article by newspapers and the news wanting to do a follow-up story, and my mother always said yes in hopes that someone could benefit from our story like we benefited from the stories on Sally Jesse Raphael. I didn’t understand what she meant at the time, all I wanted was to fit in and have friends and not be looked at as weird for having a disease (teenagers can be so mean!). One of the county Freeholders even declared May one year Lyme Disease Awareness Month, and my family was brought in to speak. (I was so unhappy about it at the time, but in hindsight I can appreciate how the publicity helped, especially since being on the news was the turning point in my situation).
Throughout my high school / teenage years, my illness seemed to come and go. It would go into remission for well over a month, and then I would be in bed for weeks on end. I was having severe problems with my knees when I was 18, and I used a cane to get around and I used a wheel chair for anything that wasn’t a short walk. I went back to high school with my cane for the last 2 weeks of my senior year so I could walk at graduation, and there was one classmate in particular who thought it was funny to push me down and make me fall, and he’d laugh at me.
I saw specialists for my knees, and with some physical therapy, determination, and a lot of pain killers, I was able to get away from the wheel chair and learn to re-balance myself without the cane. My outlook on life began to change at this time as well. Instead of feeling bitter and angry and wanting to know why all this happened to me and my family, I appreciated the feeling of having my legs under me. I became aware of everything I could do, and less aware of the things I couldn’t do. I also learned not to be too concerned with others’ opinion of me, just to care about my opinion of me. I’ll be totally honest with you though, I also got through a lot of the hardest most challenging aspects with the mental visualization of attending my 10-year high school reunion and pushing that creep flat on his ass in front of everyone. We’ll see what happens. 🙂
At this point in my life, I was 18, I had my high school diploma, and I was still either suffering from Lyme Disease or suffering from the damage the Lyme Disease did to my body, but going to work wasn’t an option for me. I got approved for Social Security (SSI and Disabled Adult Child Benefits), and was pretty much told that I had the rest of my life to live, and I had to figure out how to do it on $400 a month! I signed up for some college classes as a business major, and gave some real thought to acting out on my fantasies of being a business owner and being able to take care of myself. Most people entertain that idea at some point in their life but end up dismissing it – I felt there wasn’t much I couldn’t do as long as I wanted it bad enough.
My health seemed to remain steady for well over a year. I’d still wake up in the mornings in severe pain, and I was on a lot of prescription medications because of the damage the Lyme did to my body when it was active. Life was beginning to feel “normal” for the first time I could remember, and I felt like I was making a contribution to the world around me instead of just coasting by.
I started having really bad pains in my lower back in March of 1999, and went to the hospital several times for what they diagnosed as a recurring urinary tract infection. One painful morning I passed a stone, and since I had this little stone in hand and I had suffered 5 infections within 2 months, I went to a specialist. It ended up that my left kidney had taken a beating from all the heavy duty medications I had been on for such long periods of time and it formed a stone. I had surgery to have my kidney cleared out of any remaining stone and infection.
My health seemed to be steady again after my surgery. I wasn’t healthy, but I could walk and I could think and I wasn’t having that severe of a difference between a good day and a bad day. Over time, my arthritis pains got more severe, my headaches got more severe, I was taking naps, and a lot of the old physical sensations that I knew to be Lyme were resurfacing. I again felt healthier for a period of several months, which takes me into April of 2001.
I woke up one morning in more physical pain than I could bear, and I went to a doctor and eventually learned I had a herniated disc in the cervical part of my spine. I wasn’t in an accident, I don’t lift anything heavy, I wasn’t hit — it appeared my disc might have even became herniated while I slept. I started physical therapy 3 times a week for a period of 8 months, and I noticed I would begin to improve and then regress back to square one. It got to a point where the physical therapy seemed to be too hard, and I began to fear my Lyme Disease was out of remission.
In November of 2001, I told my primary doctor that my Lyme was active, I could feel it, and I needed to see a doctor who could treat me. My doctor referred me to one of the top 5 Infectious Disease doctors in South Jersey, and he assured me that doctors understand Lyme Disease these days, it’s common, and this doctor would help me.
I went, told the doctor about my history and present complaints, and he ordered a long list of tests and blood tests.
When I returned for my test results, this “Top 5” doctor told me all my results came back normal, nothing seemed wrong with me. He then went on to tell me that he doesn’t think I’m ill at all, and I’m more lazy and out of shape than anything. He felt if I exercised and got in shape that I’d be just as healthy as any other 24-year old. He also told me that thinking I was sick for so long put me into “Sick Mind”, and I would feel sick for as long as I told myself I was.
I was so angry when I left that day. I was inside my skin, and I was feeling pain that was almost unbearable. I sought out another opinion, and learned through an MRI that I now had 3 discs in a row out of place, not just one. I also found I only had the energy to work 2 or 3 hours a day, and I’d be in bed the rest of the time.
I found my way to the Lyme Disease Treatment Center in Marlton, NJ (never even knew that place existed!), and I explained to the doctor what I experienced as a kid, what I was experiencing now, and what the infectious disease doctor’s “diagnosis” was. Dr. Schuchman said he certain I was suffering from Lyme Disease, and he would start doing PCRs every other week until I got a positive test, and at that point he could treat me. He also ordered a couple MRIs and a Brain Spec Scan so he could see what was going on inside.
Now recall what I said earlier about it being difficult to diagnose Lyme after the first 6 months — well Dr. Schuchman was trying to diagnose it after 16 years! His theory is that if you keep taking blood and urine samples every other week over a period of time, you are bound to find some trace of spirochete DNA if there truly is one in there. He said it’s like finding a needle in a hay stack, but if one keeps looking for the needle, they will find it if one is there. He warned me that it takes some patients 10 samples before they come up with a positive, so don’t get my hopes up too early on.
He also explained that even though he is a Lyme Disease expert who only treats Lyme and Lyme-like Diseases, and all of his research is Lyme-related, health insurance companies would not pay for treatment unless he could show a test proving Lyme Disease was present. Even though he should be able to make a clinical diagnosis and practice medicine (after all, the state of NJ did give him a license to practice medicine, and these people at the health insurance companies are NOT authorized to practice medicine), he had to do it this was if he was going to be able to help me. I started going in every 2 weeks and leaving a blood and urine sample. I also kept feeling sicker, and the few part time hours I was supposed to work were getting to be too demanding.
One particularly rough day in February, I went in to give my blood and urine sample and get my test results, and Dr. Schuchman shared with me that my Brain Spec Scan had come back showing diminished brain functions, which means part of my brain has suffered permanent irreversible brain damage, and it looked like my brain was still swelling up. My tests that week also came back showing a negative test for Lyme, so I had no choice but to make an appointment to go back in 2 weeks and try again.
I went home that day and went to bed and cried myself to sleep. Things seemed pretty hopeless to me again.
I received a phone call on Friday, February 15th — my test results came back positive! They could help me, my insurance could no longer refuse to pay for treatment! I went in the following week to get a PICC line put in and start my IV treatment. (A PICC line is an IV that has a very long tube that goes in my vain from my arm to right above my heart, and it can be left in for up to 4 months at a time). I’ve been getting treatments for about a week now.
Things aren’t necessarily better just because I’m on treatment, though. I still have permanent damage done to my brain and I’m sure other parts of my body that will never be restored, even after my body is free of all spirochetes. A situation has also come up where my body is rejecting my PICC line, and my arm is swollen and bruised and has a few goose eggs on it. The doctor gave me some medications and steroids to counteract the rejection, but if it doesn’t work by tomorrow/today, they have to pull my PICC out and try to put another one in my other arm.
My treatment plan is to receive IV medication daily until May, and then I will be taken off the IV and the PICC will be removed. I will feel sicker before I feel better, because the symptoms of the Lyme Disease intensify at points during IV treatments. May isn’t even the end of this therapy either. Once my PICC is pulled out in May, I have to start PCRs again. Once he gets another positive, we keep repeating this process until one full calendar year goes by that all the PCRs come back negative — only then would Dr. Schuchman feel it’s safe to say I’m Lyme-free. I may still be doing treatments or PCRs 2 years from now, but at least I’m with a doctor who knows about Lyme Disease.
I know I’m writing a lot in this letter, and that this is a very detailed long letter coming from someone who is usually a quiet and private person. I usually don’t know what to say to people in a regular setting, so I opt to say nothing. I’ve lived a very different life than most people, and it’s even difficult to try to relate to others, because most people did certain things (like go to high school) that I didn’t get to do. Most people have never been in a wheelchair. I always thought that my stories were different and I didn’t fit in and I should simply keep quiet because any point of view I would have to add would be depressing. My recent experiences with trying to get treatment, learning there’s permanent damage, and knowing I haven’t really been able to work in 2 months got me thinking. I knew not to listen to that infectious disease idiot because time after time my mother would take me to new doctors until she found help. How many people are referred to this doctor for help and are turned away when they are seriously ill? People need to hear my story, because I realized someone could be helped from my story, and you might know that person or be that person.
If you know someone who suspects they may have Lyme Disease, they need to consider seeing a doctor that approaches Lyme Disease diagnosis and treatments similar to Dr. Schucman’s (the PCRs / needle in a hay stack). One negative Lyme test cannot rule out Lyme – I had several before my positive came back! The medical community as a whole is still ignorant on Lyme Disease, and anyone who suspects they have it needs to put themselves in the right hands or they could die. Some ignorant medical doctors will even say that Lyme Disease is a bacteria and is therefore treatable with a round of antibiotics. That works in theory, but what these doctors don’t acknowledge is by the time they’d pump enough medication into my body to kill the spirochetes, they’d kill me — the patient — first.
You also need to know that Lyme Disease is often called “The Great Imitator” because it takes on the characteristics of other diseases, and sometimes people are diagnosed and treated for another illness but don’t get better because they have Lyme Disease and NOT the other illness they were diagnosed with. Some illnesses Lyme is known to imitate include Lupus, MS, Cystic Fibrosis, Muscular Dystrophy, Bells Palsy – the list goes on and on. If you know someone who is diagnosed with an illness and that regular methods of treating that illness isn’t working for them, they might want to consider going to a Lyme expert even if their intentions are only to rule out having Lyme disease. PCRs won’t come back with a false reading; they’re looking specifically for spirochete DNA.
I also urge you to take notice of what the health insurance industry is doing to Lyme Disease patients and treatments — if nothing else, that part should scare you. Even if you don’t have a loved one who has Lyme Disease, someone you do know could have an illness that would be singled out next. Even if Lyme Disease has not personally affected anyone you love in any way, you need to stand up with those of us it is affecting and fight for our rights. If the insurance company wins this one, what disease will they refuse to treat next? Diabetes? If they can find a way to do it with Lyme Disease, they will find ways to do it with other diseases too, and it’s just a matter of time that either someone you love will get Lyme Disease or someone you love will be refused medical treatments because the insurance companies don’t want to lose the money.
I also urge you to learn about Lyme Disease. If the public were more aware of what it is and isn’t, then the public would not allow for such incompetency from doctors. If I went to an infectious disease doctor and requested heart surgery, I’d be told that he doesn’t know how to perform heart surgery, but he will never admit he doesn’t know how to handle Lyme Disease! This can’t be tolerated! We need to force the medical community to let go of their pride and direct patients to facilities that are capable of treating them.
I also urge you to not feel so safe that you won’t personally get infected with Lyme Disease. Many people feel that if a hereditary disease doesn’t run in their family, they won’t get it, and if they don’t smoke they won’t get lung cancer, and if they wear sunscreen they won’t get skin cancer, and if they use protection they won’t get HIV. There’s no surefire way to protect yourself from Lyme Disease. You could run across a Lyme tick walking across your front lawn, by petting a dog, by standing in line and having one transferred from a stranger; the possibilities are limitless. Some people think Lyme season starts in May – be aware that Lyme ticks are around even in the cold winter months! You don’t want to ignore the issues surrounding this disease while you’re healthy, because you never know if you could get infected and not even know you were bit by a tick. I hope you think long and hard about this, and take some action now to protect yourself and the general public from having to go through what I’ve been through, or worse, having Stage 3 Lyme Disease like I do, but not having an accurate diagnosis and not be getting treatments. The treatments they are giving me through my IV is the difference between me living with or dying from Lyme Disease.
If you know anyone who needs someone to talk to about what they’re going through with Lyme Disease, please have them contact me. If you know someone who thinks they might have Lyme but doesn’t know what to do next, I’ll point them in the right direction. Even if they live in CA, I’ll be sure I put them in the hands of someone trustable. If you want to learn more about what you can do to help further the cause of Lyme patients, let me know. If you’re simply curious and have questions, let me know.
If people didn’t go on Sally Jesse and speak up, I might not be here now, so I’m going to speak up just in case there’s someone out there who needs to hear me.
My personal battle is also far from being over. I currently feel very ill, and the steroids they are giving me is making my present symptoms worse. I’ll have my ups and downs.
I just wanted to take some time to let you know how I’ve been doing and what my “story” is.
Talk to you soon!
Take care,
Kelly Spina
UPDATE:
It’s now 2014, and I wanted to share the above story – a letter I emailed to all my friends and online acquaintances on February 27, 2002. To the best of my recollection, it details my history with Lyme Disease. I added the photos and links today when transferring the letter to my blog.
I was told never to expect to have children since I got Lyme Disease right around puberty. I’m 37 now, and am blessed with two beautiful and healthy daughters.
I needed a couple more IV treatments after I wrote this letter originally, and even needed to get a longline PICC in my neck because the veins in my arms were all shot. I’ve had numerous Lyme-related scares with my liver.
I’m still on Social Security, despite several attempts to work. I fatigue easily.
I’m also at a point where I no longer let the Lyme define me. It’s one thing I deal with, but it’s not my whole life. I have good days and bad days, but don’t we all? I’ve built a family, a home, and I still dream and plan for a bigger and better future.
Lyme takes a lot from those who live with it. But please don’t let it take your hope!
If you ever want to contact me about Lyme Disease, please email me at lyme@kellyspina.com. I’ll write you back or call you back. Be patient with me if it takes me a bit. You’re not alone! There are people out there who’ve been through this and who care!
Kelly 🙂