How has Lyme Disease affected your life?
I am a mother of 4 kiddos, ranging from 19-6. The oldest has made me a grandmother! I was a social worker until this past January where Lyme has left me bedridden at times and quite limited. I had been sick most of my life, dealing with asthma and allergies as well as some severe anxiety and depression. I had been hospitalized a total of 3 years of my life accumulated. My mother tried to give the most normal life as possible but environmental, physical as well family dysfunction would try my spirit.
My mother now tells me she remembers a rash that looked like a bull’s eye on me was a child, but doctors had passed it off as ringworm. Throughout childhood, I would be on antibiotics, steroids, and many other medications to keep my asthma at bay. I was allergic to animals, smoke, perfumes and dyes, pollen, molds, almost anything outdoors. My guess is my Lyme was kept at bay as I would be medicated periodically with all different types of antibiotics. When I was five I started pulling out my hair due to high anxiety, a disorder called trichotillomania. I would pull out eyelashes, eyebrows and my head hair.
Teenage years:
My parents ended up getting divorced. I started counseling and using drugs. I would engage in crazy behaviors. The once straight A student dropped out of school and ended up in rehab. My behavior was completely out of control. My asthma continued and I would continue to be hospitalized. My knees had also given way at the age of 16. This should have probably been a symptom of Lyme but was dismissed as my lengthy use of prednisone that had supposedly destroyed my ligaments.
My poor choices led me to have 2 babies by the time I was 19. Both pregnancies I had issues. I was still having asthma issues. I worked at restaurants and would get pneumonia breathing issues. I had surgery on both knees, one at 17 and the other at 22. I would continue to take antibiotics and steroids intermittently. I then had a third child at 23. This child was healthy out of the three. All of my relationship choices were pretty terrible and I was incapable of loving myself or respecting myself. I would make many horrible choices and go out and drink and smoke pot to “have fun.”
This would always hurt me and I would again end up in the hospital. I also ended up in the hospital for a few suicide attempts. My parents had finally divorced and my mother decided to remarry. I felt lost, alone and did not feel as I fit in. Eventually all the illness caught up with me, leaving my doctors to tell me I could no longer work in restaurants. I was approved through Vocational rehabilitation to attend college. I was able to get my GED as well. I would go to therapy weekly. As my mother had a new family, my dad had a new girlfriend with young kids. I look back and look at how mentally unstable I was. Lyme and my support system kind of sucked at the time…
20’s:
I now had 3 children and met a man who truly loved me. He would take care of me when I was sick, but of course the sick attract the sick, he was an alcoholic. He would be very loving and raise my 3 kids. The doctors decided to try sinus surgery to help alleviate my asthma symptoms. It helped for a bit. Again, I was on countless antibiotics and steroids. I would have horrible shoulder and back pain but I always just dealt with it, as my breathing issues were worse and I had gone to doctors almost every other week. Every doctor office and staff knew me by name. I hated being the frequent flyer and I knew many of them thought I was a hypochondriac. My husband who relapsed ended up in jail due to drinking while being on probation, and would hang himself on his 31st birthday, leaving me widowed with 3 kids ages 2, 5, and 7.
My physical health of course took a turn for the worse. I would work and go to school full time, and raise the kids. I was always tired but pushed through it. I ended up graduating with honors with my associates and received a full scholarship to a 4 year college. There was a semester at the undergrad school I had to take a leave, again due to my health. I was in a car accident and then also got some sort of infection, it took me weeks to recover which pushed me back a semester. Pain in my back, shoulders, knees, asthma and allergies would continue to have me susceptible to infection. The May before I graduated I got my first migraine that would just not go away. I was put on antibiotics as well as migraine medications. I remember feeling out of it and completely not right. I did graduate with my Bachelor’s and began working with Autistic children, something I was quite good at.
30’s:
I would again meet someone who was not good for me and get pregnant with baby number 4. I had my fourth baby at 31. The pregnancy put me on complete bed rest. I would have preeclampsia, breathing and heart issues. The father did not stay with me and my mother moved in for months taking care of me. The baby ended up with heart and breathing issues when he was born. He ended up being 10 lbs 8oz. due to the prednisone. I was on BP meds, antibiotics and other meds while pregnant. I was fired while on short term disability at my job. I cried when I lost my insurance and then had no income. I used my income tax to live off of, and once I had the baby was able to collect unemployment. Eventually I found another job working with Autistic children and again loved my job but I would still miss a ton of work for being ill. I started having stomach issues, where I felt like I was going to vomit all the time. I would be placed on many prescription anti-acids and of course they did not work.
I met my husband who I am with now. We have dealt with many ups and downs in our marriage. He has taken over the father role of all 4 of my kids. He is a good provider. I was still getting sick here and there and just didn’t realize my immune system had been so compromised. There was a family history of gall bladder disease so as my stomach issues continued, and my gall bladder removed. My stomach issues continued to where I ended up passing out at work. My doctor stated I needed to be hospitalized and they should run tests. My doctor who hospitalized me ended up giving me a week worth of IV antibiotics. After this, I stayed well for almost 8 months. Than all the symptoms returned and I would continue to get dizzy, vomit, pain and just not feel right.
2011-2012 Moving, Marriage and More sickness:
We moved to Ocean City MD, from Lancaster PA and I would start a new chapter. The summers I always seemed to be healthier and the first summer here I did okay. I started a new job as a clerk at our local health dept. and two weeks later we went to Disneyworld. Halfway through the trip I got seriously ill, not being able to eat, throwing up and the 14 hr ride back. I started seeing a gastronomist who did a colonoscopy and endoscopy. He placed me on more anti-acids as he said I had IBS. I really started watching what I ate and started taking probiotics I did okay and would work, but I missed a lot being ill.
Mark and I got married in May 2012. I ended up becoming very ill again a few days before we left our honeymoon in Jamaica. My primary doctor prescribed me antibiotics and an anti-anxiety. After a few days of antibiotics I started feeling better. Right before the actual wedding, I became so sick I felt like I was going to pass out and nauseas. I had to push the wedding back a half hour. I was able to push through it, but I do remember feeling awful. As the days went on my stomach continued to hurt and I would buy milk of magnesia and take baths daily.
2013 Finally a diagnosis!
I became so ill I ended up once again in the ER. At the time I did not know they tested me for Lyme. I was so excited to get a phone call saying I had a diagnosis! My PCP’s nurse called and stated that they were putting me on doxycycline. My Lyme was at bay while on the antibiotics. It was 3 months now since I was on the antibiotics and at least the brain fog seemed to lessen and the pain was not as bad. My PCP said she could not continue to prescribe antibiotics. Two months later, symptoms returned tenfold. I made an appointment with a Lyme doctor in Lanc, PA where I was originally from as there was none here.
Over this past year I have become more ill and heart issues and high BP. I experience pain throughout my neck, hips, heel, and shoulders. Brain fog, confusion, twitching, and so tired. My breathing recently deteriorated so I am now on prednisone which is a no-no in the Lyme community. In the past few months I tried a glutathione IV and ended up with anaphalaxysis. I would try multiple supplements but I would have allergic reactions. My liver enzymes are high and white blood count is high. I have anaplasma, mycoplasma, h pylori, borrelia and possibly babesia and bartonella. I was recently allergy tested through the Lyme doc and we realized that I am allergic to a ton of food, and many other things which has limited my treatment. I am currently doing the fodmap diet which has helped immensely. I am also taking all gluten, dairy free, casein free, nut free supplements.
I have been on FMLA from my job since January and it killed me at first thinking that I was not worth anything if I am not working. I have learned that is wrong. I realized that I can be a huge impact on my children while I am home, even if it just sitting on the couch. I can be a support to my husband and cheer him on, and I can help others with Lyme. I can advocate for others with Lyme. My immediate coworkers have supported me and did the Lyme Challenge which has brightened my days! I will push forward and I will not remain silent!
What inspires you?
People that do not follow the norm, God, the beach, my family, and art.
“Courage is not having the strength to go on; it is going on when you don’t have the strength.” – Teddy Roosevelt