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Jen's Chronic Lyme Battle

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Many of you know me as the bubbly, passionate, outgoing, music loving, creative and child-loving "Jen" or "Miss Jen". I've always taken my role as a care-giver and teacher seriously. Teaching and making a difference in children's lives is my passion and I absolutly love what I do. Otherwise, I wouldn't have been surrounding myself with hundreds of kids for the past 15 years. My upbeat and positive nature has got me through alot in my past, especially losing both my parents as a late teen. I stayed strong and overcame the hard and challenging obstacles that life throws at you as I had in my eyes, already become a survivor. However, lately...being strong has been harder. As many of my close friends and family know, I have been battling some health issues for the past few years. It's been a rollercoaster of a ride, going from specialist to specialist trying to figure out what has been going on and why. I think I have tallied between 8-10 specialists within the last 2 years alone...ranging from multiple gastreneterologists, endocrinologists, neuroIogists, gynecologists, physical therapists and rheumatologists.  I have been diagnosed with IBS, Small Intestine Bacterial Overgrowth, Pelvic Floor Dysfunction, Thyroid Disease, Thyroid Nodules, Anxiety, Raynauds Syndrome, Migraines and Vestibular Disorders, Severe Vitamin Deficiencies, Leaky Gut, Multiple Food Intolerances, Chemical Sensitivities and Fibromyalgia, yet all my test results indicating anything serious would come back fine. I started to think I was surely going crazy as doctors would shove a simple medication in my hands saying "You will be fine, take this".  When I would ask "Why is this happening? What is causing all this?" the doctors would simply nod their head while leaving the room and say "We arn't sure, but feel better and I will see you in 6 months". I became discouraged and decided to see a Functional Medicine Doctor, knowing their method revolves around getting to the root issue of the problem and testing everything possible with expensive yet sensitive lab tests. I had been tested for Lyme Disease multiple times in the past 6 years because of the so called "migraines and neck pain" I always had...but the test always came back negative or doctors would say "You don't have Lyme, you never had a rash or tick bite". I went with it...and I went with the test results. I wasn't aware how bad the conventional and standard testing for Lyme is. In March of 2016 I saw a Rhematologist at Brigham and Women's in Boston and had every auto-immune test done under the sun. I even demanded another Lyme test. Everything came back fine, which is when they decided I have Fibromyalgia. Two weeks later at my Functional Medicine Doctor, I sat there teary eyed as I knew there was more to this, it just didn't make sense. My chronic neck pain, dizziness, anxiety (which I am NOT prone to), stomach issues, muscle aches and swelling, deficiencies, periods of low blood pressure, extreme fatigue and brain fog were not getting better despite trying what doctors have said to do. I was and still am not able to even sit in the passenger seat of a car without instantly developing motion sickness, or be around bright lights or fast paced environments or it brings me into an episode of vertigo like symptoms. I found myself missing more work, more special occasions and being bed-bound resting. I had done some research on Lyme and had heard from a friend who suffers from Chronic Lyme that there is better testing but its expensive. I bit the bullet and did it...and sure enough it came back positive. It was a relief to have an answer, but it came with alot of other emotions too. Panic, fear, stress and emotional turmoil set in as I began to learn more about Chronic Lyme Disease. Doctors seem to think I have had it for years, and when you have had it for so long...tests do not detect it as easily. Having been an outdoorsy person, its possible I didn't react with a rash or notice anything. Having worked with children who constantly spread germs ( I still love them dearly), any flu like symptoms that could have been Lyme were possibly kicked to the side and assumed to be a virus going around. I am now left with looking at 1-2 years of treatment, if not possibly treating this disease for the rest of my life as it is considered "Chronic". Many people think Lyme Disease is a quick fix of antibiotics...which it can be if caught at the right time however it progresses and begins to dig deep into different parts of the body. It also comes with other infections which I will be tested for as well. The typical treatment for Chronic Lyme includes lots of long-term antibiotics, lots of supplements, lots of rest, and possible IV treatments. Because my body is just shutting down at this point and my gut is a mess, I will be going the all natural route and doing a special lyme herbal protocol which is proven to be just as effective if not more with treating lyme with less negative effects on the body. I don't know if it will work...everything is up in the air at this point because this disease is so complicated, epedemic yet under-funded for research and testing. What scares me the most is not being able to return to work, not regaining any quality of life back, losing relationships and pretty much going into major debt and not being able to afford treatment. Right now, insurances do not cover long-term lyme treatment. In fact, most Lyme Treatment is all out of pocket as you need to see a Lyme Literate Doctor. My costs for treatment (what I am aware of right now) are the following: *Multiple Herbal Antibiotics, Immune Boosters, AntiVirals, Detox - $100/Bottle (Each bottle lasting 1-3 months) *Weekly IV Infusions for 3 months - $200/Infusion *Weekly Physical Therapy - $80/Week *Weekly Pelvic Floor Therapy for 6 weeks - $80/Week *B12 Injections - $90/Month ...and then there are the costs of copayments, additional supplements, vitamins and medications to supports my endocrine system which has been hit hard as well as my nervous system on top of additional therapies such as acupuncture and lymphatic drainage. All this while not working and getting very little per month from my long term disability is scary, while trying to also pay rent, car payments, phone and insurance. I'm not very good at asking for help, I do not find it easy at all...I think many of us feel that way. But I have come to realize that I do need as much help as I can get during this journey. I know its going to be a rough treatment, and its more than likely I will feel worse before I get better...and I am striving to see that light at the end of the tunnel. I believe that God has a plan for me, and things happen for reason. I look forward to one day enjoying the activities and things that once brought me happiness without feeling ill. I look forward to working at my best level, enriching children’s lives and helping guide them through life's obstacles if that is my calling. I look forward to having a family of my own if I am meant to. I look forward to giving back to others and being able to provide more than I can now...I look forward to feeling like myself again.



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Donations 

  • Emma Healy
    • $200 
    • 7 yrs
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Organizer

Jen Callei
Organizer
Plainville, MA

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