© Image by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

When my daughter was around 6 months old I started getting really sick. I had the flu or a bad cold every two to three weeks. I was convinced that my lack of sleep was causing me to get sick. I even thought our house had mold and I had our basement cleaned with bleach. But, no one else in my house was getting sick. I never remember getting a bite, nor had the bullseye rash.

Around my daughter’s 1st birthday, the top of my right foot, toe and ankle started hurting really bad. I couldn’t hardly walk especially after taking walks. My PCP referred me to a Podiatrist. The Podiatrist couldn’t figure out what was wrong with my foot so he referred me to a neurologist.

By the time I was able to get an appointment a couple months later to the neurologist I started having all these other problems. I woke up every morning like I drank a whole bottle of vodka the night before. I felt so hung over, but yet I didn’t have a drink of alcohol the night before. I woke up with the worst headaches and I had nausea. My whole body hurt. I felt like I was in a car accident. My back hurt, and I had this knife in my neck that transferred to my spine down into my shoulder blades. My muscles were so weak I struggled to carry my daughter downstairs without my arm feeling like it was going to fall off. The neurologist did test me for Lyme’s disease along with 15 other tests, but the Lyme’s disease test came back negative. They diagnosed me with fibromyalgia and told me I was depressed. I didn’t want on depression medicine. The only reason I was depressed was because I felt like $#!* Every day of my life! I asked them to, “Please, help me, there’s something wrong with me.” They told me they were trying to help me. “We are trying to put you on depression medicine for fibromyalgia.” I got mad and said, “I don’t have fibromyalgia!”

I decided to go get a 2nd opinion at another neurologist which took months to get into. In the meantime, I went to physical therapy for months which they made my neck/spine/shoulder blades and foot feel worse. So, my friend referred me to a 2nd physical therapist. I had relief some days but other days I felt worse. They ended up discharging me because I made no progress.

The 2nd neurologist saw me for maybe 5 minutes and didn’t listen to me as I complained about the knife in my neck and put me on a, “migraine diet.” I logged everything I ate and wrote it down on paper for him.  Months later I went back to the neurologist for a check up for my “migraines.” The nurse in the room stuck up for me and told him I was there because of the knife in my neck and spine. To make a long story short he referred me to go get an MRI on my neck and spine. Of course that took months again to get in the place and another month to get the results read by the neurologist. The neurologist laughed at me and said, “Everything looks great, your in great health.” So I felt hopeless at this point and cried like a big baby the whole way home on the 20 minute ride with my poor precious daughter sitting in the back seat. As she watched me ball my eyes out because I spent the whole year with her bringing her to appointments with me trying to find out what was wrong with me.

So,  around my daughter’s 2nd birthday. Everything just keeps getting worse. I thought I had cancer and I was dying. I struggled to take care of my child. I dreaded having to take care of a human being when I wasn’t well enough to take care of myself. I was a stay at home mom by myself with little help because her dad works 60 plus hours to support us and I don’t have grandparents that help. I had shooting pains in my neck just to change her diaper with the knife stuck in my neck. I felt weak. I couldn’t even open a milk container to get my child a glass of milk. Both feet started hurting. I had really bad shooting pains in random spots and muscle aches. The worst headaches. I had cramps in my stomach and I couldn’t sleep at night with night sweats and pain.

I called my PCP to help me and he told me I might have Lyme disease and he wanted to get me tested for it again. The test came back positive for Lyme disease. He started me on doxycycline for a week but the pains in my stomach just kept getting worse and I had persistent diarrhea. He put me on Amoxicillin for a month which at least I woke up and I didn’t feel like I was hung over! But I still had symptoms. I was put on Cerofrom or something(21 days) I can’t remember but I still had symptoms. I was put back on doxycycline for 30 days. It took away my headaches everyday, and the knife in my neck and spine but I still had symptoms.

I starting getting arthritis like pain in my hands, joint pain, my muscles in my thighs hurt along with pains down the top of my arms. My PCP referred me to a rheumatologist. They tested me for 15 more blood tests and got more X-rays. But, of course they told me I had fibromyalgia too. My PCP then referred me to an infectious disease specialist in Altoona. Of course I got more blood work and still no answers. And he wasn’t doing anything to help me because he said “Lyme’s disease is complicated.”

I then was referred to a infectious disease specialist in Pittsburgh. Which he told me I may have a thyroid problem or I have syphilis. Both tests came back negative and told me to go back to my PCP. Which, I later read an article about the same hospital that I went to was being sued for mistreatment and misdiagnosed for Lyme disease. The numbers keep rising apparently for people suing because all their symptoms got worse over time(as all of us Lymies already know).

Currently going on 2 years of this I just have learned I have to fend for myself. I cannot afford an LLMD.  I plugged myself into a Lyme support group that has been super helpful. I am changing my diet slowly and drinking tons of lemon water and green tea. I take a detox bath two times a week. I am taking Amoxicillin again for the 2nd month along with probiotics and vitamins. I heard acupuncture works so I plan on doing that soon!!! Because I still am not well and still have really bad “Lyme days.”

Lyme disease has robbed my experience as a mother. I wasn’t able to enjoy my daughter the way I wanted to. On my good days I try to enjoy her as much as possible. As she just turned2 and a half years old. I just thank God everyday that my daughter is the happiest, healthiest, most awesome, funny, cool little girl and I didn’t destroy her personality bc of my miserable disease as I faked being healthy(except the ride home crying that day) every step of the way so she would be a happy little girl unlike her sad, depressed, miserable, “dying” mother. I am hopeful that I will get better in time and I can live a normal life and start enjoying my daughter. I don’t wish this disease on my worst enemy. This disease sucks and someone needs to find a cure so people don’t suffer for years. Thank you for reading my story.

How has Lyme Disease affected your life?

I got infected or so we think on my 21st birthday. I never knew Lyme disease was such a big deal and I come from the place it was discovered. For a long time it took my health, my love for exercise and sports, my love for cooking and even my dream of becoming a vet. I have pain daily in my arms and legs. The fatigue some days is enough to make you want to go back to sleep before you even get up. It’s affected relationships I’ve lost a lot of friends but also gained some. It’s made me see the value in family and a support system.

What inspires you?

My career inspires me, I am currently in school getting my DVM. I never thought I could do this, but here I am starting my 2nd year of vet school coming up on my 4th year diagnosis anniversary.

“For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.” – Romans 8:18

How has Lyme Disease affected your life?

Have suffered for 18yrs. Also lost my career and now have to live on Social Security. Would have committed suicide also a long time ago because all of those around me have not given the support they should. But I am a Born Again Christian and Jesus is with me. > One CRUCIAL POINT I NEED TO MAKE is that when the lyme was the worst, I heard the audible voice of God tell me to take the herb SHEEP SORREL. I did for awhile but in my screwed up “flesh” decided it was not showing enough progress and quit. HUGH MISTAKE. I mean I literally heard the audible voice of God say, “sheep sorrel”. I didn’t know what he was even saying because I had never heard of the herb – so I wrote the words down, called local health food store and learned it was in fact an herb….So I quit taking it. To this day I cannot believe I did that. Have endured said disease and lost so much only to find out that SHEEP SORREL CLEANSES THE BLOOD – EXACTLY WHERE THE SPIROCHETES LIVE. So, I strongly advise anyone who comes down with this disease to TAKE THAT HERB AND NEVER STOP. It is water soluble, so you cannot become toxic by it.

What inspires you?

What most inspires me is the Bible.” – BJ

How has Lyme Disease affected your life? What inspires you?

In high school, I was around 125 pounds, athletic, averagely in shape, had good grades, and was very social. During my senior year I had put on weight in a matter of months and the following summer after graduation is when everything started to really go down hill. I was moody, slept constantly, wasn’t doing well in school couldn’t remember things here and there, had stretch mark like scars all over and they went around my entire waist like a belt, under my arms and the side of me, and down my inner thighs, my hair got thinner, and I was severely anti social. I thought I was losing my mind because no doctor knew what was wrong so they would just send me on my way and tell me it’s all in my head or that I just need to take better care of myself. I got through my first semester of college (failed everything) and moved into the second semester still thinking I was just crazy because no one thought anything was wrong and that college must clearly not be for me even though I did well in high school. So middle of the second spring semester, (2014) I was working for my mom at her preschool and a parent had come in telling her about her 13-year-old daughter and 3-year-old son who were very sick and was telling my mom about their symptoms and when she started talking about her daughter my mom started noticing similarities between her and I and called me up to talk to this parent. Turns out this parent is also a doctor and asked if she could see my waist- not knowing the slightest bit what was happening I showed her the scars and she went into full doctor mode and started going to town with information to my mom about what to to do. And instead of going on a spring break trip with my friends, I sat in a doctor’s office talking about treatments and taking a medical leave from college and pretty much saying goodbye to life for a while which included the classes I was currently in at community college, I had just been accepted into an internship and been accepted into an out of state university-  all just a couple days before being diagnosed.

I started out detoxing, then supplements. And I thought the supplements were horrible just by themselves. I also changed my diet- no gluten, no sugar, no dairy. Then by May was finally starting on antibiotics and oh my word I have never felt so sick and helpless in my life. The summer was brutal now mind you I live in Texas so on top of feeling horrible it was also raging hot. I did the normal working up to different antibiotics and doses but every higher dose or new drug made me feel more and more helpless. And by the end of the summer I was ready to give up. I felt like my body was no longer indestructible and that if I even got through this than there would be no way to have a normal life after because I knew things would be different. Come September I was finally clearing up and feeling better and from there it was a steady climb uphill and everything went smoothly, I was able to slowly decrease antibiotics and I was able to go out and not be stuck in bed. January 2015 I was finally declared in remission and the weight that was lifted off my shoulders is indescribable. I was left with a couple of set bacs that I refer to as” permanent damage” being that it was in my brain so my emotions are pretty much shot, my nervous system which causes severe anxiety, faulty hearing, my MTHR gene needs a supplement, and I cannot have kids. And I stay on a gluten free diet but I wouldn’t consider that horrible.

But I got my life back.

© Image by Life in Lyme Light.

How has Lyme Disease affected your life?

I have been battling Lyme Disease for over 5 years now. I know that is a very short time compared to others who have been battling for, sometimes, decades. However, when I was first diagnosed and going through different treatments, I began to feel like my whole life was affected by Lyme. I didn’t know who I was and I felt like I had lost myself and I had become this awful disease. Then I came to the realization, which has now become my mantra: “I am not Lyme Disease and Lyme Disease is not me, but I am who I am today because of Lyme Disease.”

What inspires you?

This mantra (above), inspires me. However, there is another quote that inspires me also:

“If you ever have a bad thought about yourself send it back to hell because that is where it came from.” -Brigham Young

This quote has helped me get through some really hard days with Lyme. It has helped me keep going when I just want to give up, and give in to this disease.

I don’t think my wings would be very fancy, or very beautiful at all. I thing they would look frayed and worn on the edges. I would want them to look that way. I might have a few tears in them, but I am still able to fly. This shows that I have been through a lot, however, I am still making it. I am still able to fly.

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

‘A Thief Named Lyme’

Undetected Lyme Disease is a stealthy, insidious, and patient thief that robs you of your life with no prejudice or mercy. Late Stage Chronic Lyme Disease, Babesia and Bartonella have taken my money, my job, and obviously my once taken-for-granted healthy life. Lyme and ‘friends’ (other TBD’s- Tick Borne Diseases) are sneaky. If you aren’t one of the ‘lucky ones’ to have found the tick and/or gotten the tell-tale bullseye rash then the chances of you having Lyme Disease and its ‘friends’ probably wouldn’t even cross your mind. It didn’t mine, especially after many negative test results.

My symptoms started in 2004 as left facial numbness, headaches, tinnitus, fatigue, and neck pain which are fairly classic Early Stage Lyme Disease symptoms. However, without ever seeing a tick (which can be the size of a grain of sand) and/or a rash it’s difficult to know for sure when I was infected. I have worked many summers on the island and grown up here as a child so I knew I had a higher chance of exposure, but not having found a tick I really wasn’t that concerned. I started seeing a neurologist who over the course of 6 years tested me 7 times for Lyme Disease- twice by spinal tap- all with negative results. At this point I was convinced I did not have Lyme Disease. Little did I know.

By 2008 my symptoms had progressed and seemed unrelated. I was being sent from one specialist to the next. Nobody connecting the dots that the facial numbness and migrating joint pain were related to the continuous sinus infections I was having for a year, or to the bouts of GI symptoms that kept me out of work for months or the year long fever I had for no apparent reason. By then the chest pains, dizziness, vertigo, anxiety and mood swings (lovingly called Lyme-Rage by us Lyme Warriors) had also joined in on the fun.

Fast track to 2012 when literally overnight my world got turned upside down. I had full body tremors, difficulty walking, cognitive issues, and my hands became painful and nonfunctional. Over the next 3 years I went to neurologists, rheumatologists, gastroenterologists, urologists, and my primary care doc more times than I care to remember. I even went to the Mayo Clinic for a week. The only diagnosis anyone could come up with was neuropathy (a disease condition of the nerves), but no one could figure out what was causing it.

With neuropathy my symptoms are shooting, stabbing, pins and needles, burning nerve pain anywhere and everywhere in my body. My toes, fingers, nose and ears always feel frost bitten. I can’t control my body temperature. Other symptoms include night soaks, urinary incontinence, light and sound sensitivities, coma-like fatigue, and insomnia. My muscles ache like I’ve run a marathon and then got hit by a truck, and also have the flu. The horrible body ache is my constant pain. I have confirmed memory loss, and major problems reading/writing/multitasking because of this. I have not been able to work since 2013.

On Christmas day 2014 someone suggested I watch Under Our Skin a documentary about Chronic Lyme Disease. After watching and relating wholeheartedly to it I immediately contacted ILADS.org for a local LLMD (Lyme Literate Doctor) and got tested at the right lab (Igenex) and low and behold I was positive for Lyme Disease (a spirochetal infection), Babesia (a malarial type disease), and Bartonella (cat-scratch fever: a bacterial disease). I have been in treatment ever since and unfortunately I will be fighting these diseases for the rest of my life. When Lyme is caught this late in the game it is termed Late Stage Neurological Lyme Disease and is the most serious form.

While I was waiting on a correct diagnosis, Lyme and ‘friends’ were pillaging one room of my house to the next. Moving from one organ system to the next- including my brain, heart, and nervous system. It’s taken over every organ system in my body and it doesn’t plan on leaving. If I had known the conventional testing was no better than flipping a coin I may not be in this situation.

Learn more about Chronic Lyme Disease and Tick Borne Diseases by visiting ILADS.org, columbia-lyme.org and watching Under Our Skin. Lyme and company can be misdiagnosed as MS, Parkinson’s, Alzheimer’s, Chronic Fatigue, Fibromyalgia, and many psychiatric conditions. My hope is that no one else’s life get’s robbed like mine or taken like the countless Lyme Warriors who have lost their lives.

(Published in the Washington Island Observer in Wisconsin about my Lyme journey. My family has a cabin there. It’s a 26 square mile island with more deer than people. Roughly 700 year round residents.)

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Lyme changed my life more than I ever thought possible. I got my diagnosis in 2007 and I remember crying with relief at that time. I am a nurse and knew (or thought I did) that a few weeks of doxycycline and I would be better. Ha! Some symptoms disappeared, some exacerbated, new ones came and went. I went back to the doctor who said it couldn’t “still be Lyme because the doxy cured it.” I was sent to a Rheumatologist at Hopkins. It was the first time someone told me my complaints were in my head. I was still working full time, getting my master’s degree, and raising 2 young kids (one of which was recently diagnosed with Autism.), but my health continued to deteriorate. In 2009 my pain specialist asked me about Lyme and directed me to a ID doctor who was willing to push the boundaries of Lyme protocols and put me on IV ABX for) weeks and then extended it to 12. I felt better and went into remission for about a year. Then my entire world flipped upside down.

I was slipping away, I could feel it, my husband could feel it. We watched Under Our Skin and I just bawled. I saw myself and immediately realized if I couldn’t find a doctor to help me, I would die. I researched doctors online and as I was searching, the Jemsek Specialty Clinic was being set up in DC. I couldn’t believe it! My “everything happens for a reason” belief was a reality. God brought Dr. Jemsek from the Carolinas to me!

Little did I know the next part of my journey would nearly end my life, twice. During my first visit, I remember Dr. J looking at me and saying “I don’t know how you have made it this far. I don’t know how you are working. You are one of the sickest patients I have seen.” Finally, someone believed me! I wasn’t crazy. He also said that because of herxing and the protocol, I would become worse before I got better.  I spent the next year of my life bedridden with family members taking care of me around the clock. I don’t remember most of that year, which is probably for the best. I went into respiratory arrest twice. The first time, my dog barked at my husband until he awoke, the second time my 2 children found me, both time saving my life. I do know that I am so much better now than I was at the beginning of all this.

Since 2011 I have been fighting my way back. I lost most of my short-term memory, diagnosed with dementia. (I’m now 41). I had severe tremors, encephalitis, severe anxiety and depression. I couldn’t drive. I was home bound. I couldn’t see my friends, my children’s plays, sports games, attend school parties. I couldn’t take care of my house, my husband, my kids. I couldn’t do 1 single thing after my diagnosis that I could before.

Things are much better now, but I am still suffering. The pain I endure (physical and mental) gets the best of me often, but I keep moving forward and I keep fighting because of the incredible people in my family. My husband took over every contribution I made to the family. My children are resilient and my family loves me.

What inspires you?

My husband is my biggest inspiration. He truly provides me with unconditional love. My children are strong, kind, passionate, and brave. They make me want to continue this fight. I am an advocate for Autism, but my kids are advocates for Lyme.

“Everything Happens for a Reason.”
“Walk a Mile in someone else’s shoes.”
“Go upward and onward.”

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

I do not personally have Lyme disease, but I have a son who has suffered with it for more than nine years. Unfortunately, doctors are not educated enough on Lyme disease and its symptoms. My son went undiagnosed for eight months—long enough to let the Lyme multiply in his body. Thankfully, he was able to get in to see a LLMD who started antibiotic and herbal treatments. The next six years were filled with doctor visits and medical tests. He spent three years trialing different antibiotics and herbal remedies with no relief. He was always so exhausted and spent much of his day in bed. He used to run cross county before developing Lyme disease. When asked to describe his fatigue after developing Lyme disease, he would say he constantly felt like he had just finished running a race—he just did not the energy to get out of bed. He also developed a whole array of adrenal issues. I am thankful that today he is feeling better, not 100%, but enough to function with daily life. He still tires easily, has adrenal issues, and “brain fog”.

How did this affect my life?  It is very difficult to see your child suffering and there is nothing you can do to help. I know that God is in control of all of this, and it because of God that he is feeling better now. Prayer is powerful. We all tried to remain optimistic as month after month went by and the antibiotics were not helping. It was a part-time job scheduling the timing of the medicines (at one time he took 53 pills a day) and all the appointments, not to mention all the discussions with the insurance company over what would and would not be covered. I hated seeing him give up things he always enjoyed doing and missing events at school. The issues he was dealing with were much greater than a teenager should have to deal with. At times my helplessness was overwhelming to me.

What inspires you?

People with afflictions who refuse to give up or give in inspire me. My son’s perseverance inspires me. He has been on five missions trips in the last three years in order to help others less fortunate—even though he doesn’t feel that well himself sometimes. It inspires me when people who are suffering still want to help others in need.

Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

© Image by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

Nancy passed away recently. Here is her “Lyme story”. Essentially, it the SAME story of each one of us. Please do yourself a favor and read it. It is imperative you know the actual facts of this illness. Not one person, young or old, is immune to the dreadfully high risk of this disease.  Sadly, you have a greater chance of misdiagnosis and ineffective early treatment due to enormous ignorance surrounding tick borne illness. KNOWLEDGE TRULY IS KEY TO PREVENTION.

IN MEMORY OF A DEAR FRIEND. REST IN PEACE NANCY WHEELER. WE WILL CARRY ON IN YOUR NAME. WE WON’T FORGET YOU. ?

Nancy’s Lyme Story –– My Life Is Ticking Away

I am Nancy Wheeler, age 68, and I am infected with Lyme/Bartonella. My story is my own, but I have come to understand that it is similar to others.

I arrived at age 67, basically in perfect health. No medications, no sickness, and still functioning on my own. One day, in April of 2014, I was walking our two dogs in the woods on our land adjacent to our house. Everything went as usual or so I thought.

To make a long story short, later on that same day, I discovered what looked like a speck of dust on my left calf. I carefully removed it with a tweezers and realized that it was a tick. I thought the head was out, so I flushed it down the toilet, put some ointment on the post and continued my day.

About three days later, my left ankle was swollen and then four days later, my knee on my left leg was suffering and aching. Seven days after the bite, I was at my family doctor’s office. He didn’t think it was anything although it was plain to see the bite mark. He said, “No bulls-eye rash, it is not Lyme,” and sent me on my way.

The following week I was back and demanded a test for Lyme. He reluctantly did it and gave me a prescription for amoxicillin and sent me on my way. Some time later, my phone rang and I was told the Lyme test was negative. I was told I had rheumatoid arthritis and to come back and get some steroids. He called in a doxy prescription for 10 days and I refused the steroids.

When I returned to his office a month later, I was in even worse shape. The hot potato game began. It was a trip from one doctor to another. None would acknowledge Lyme and things continued to decline. I was basically unable to walk and four Lyme tests were negative.

I had all I could take and looked up a local Lyme support group. They sent me a list of all the LLMDs. Most required large sums of money laid out in advance and I realized that my benefits I had worked hard for for 31 years were no good.

I found an LLMD who was more than 100 miles away who took benefits. He did bloodwork of his own and it was finally confirmed that I had Lyme and Bartonella.

I spent the next six months on a roller coaster of pills, supplements and continued to go ever farther downhill. Almost a month later, I ordered the IGeneX test from California. It arrived the same week that my left foot locked up and refused to move.

My husband forced me to the emergency room at the local hospital. When I arrived, they wanted to know why I was there. I explained that my foot wouldn’t move, was extremely painful and my husband said, “She has Lyme disease.” Of course, they said, “there’s no Lyme Disease in Virginia” and so on… One of the doctors looked at me and said, “You look like a refugee from a concentration camp.” A few months later another said, “Emergency rooms are for sick people.”

When they noticed on my record that I lost 75 pounds, they decided to admit me. Three days later, nothing had been done. That same day an infectious disease doctor came into my room, told me to take some steroids, and see a Rheumatologist. I reluctantly took the steroids and was transferred to a rehab centre. Three weeks later my IGeneX results came back and Lyme was in four of five of my blood factors. I also went to a biologist/nutritionist who took a single drop of blood and you could see the spirochetes flowing through my blood and white cells were embedded with Bartonella.

When I went to the LLMD, they would not venture in IV therapy for fear of being caught. I went back to my family doctor of twenty years and showed him the results of my blood tests. He refused to acknowledge them or treat my Lyme/Bartonella. He said I was self diagnosing and needed to see a Rheumatologist.

I am currently detoxing, taking supplements and going to do bee venom therapy. If I go for IV antibiotics, I’ll have to sell my house, rob a bank or beg relatives for the $25,000 I’ll need that my 31 years of work benefits won’t cover.

Why should any sick person be forced to get treatment underground or go bankrupt trying to get well. I want someone to help us. We are a very sick group—thousands, millions are desperately looking for help. I am on a cane and hold out hope for remission.

Don’t forget me please.

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

In March 2014, I graduated from the Institute of Integrative Nutrition, where I studied over 100 dietary theories. Shortly there after, I launched my first Health Coaching business, “Gluten-Free G.” As someone who lives with Celiac Disease, I related to the complexities of adapting a gluten free lifestyle. I coached those recently diagnosed with a gluten intolerance or Celiac Disease. I was successful and loved diving into my new nutrition career.

In October 2014, I started noticing swelling in my left pinky joint. It hurt some mornings, but the swelling fluctuated and I never thought much of it. In February 2015, I fell skiing and broke my right wrist. While at the hand specialist, I asked them to take a look at the strange swelling occurring in my left finger. They told me it was swollen from impact and quickly put me in a splint. All along, I had that “gut” feeling that it was not from impact, but rather there was something going on inside my body. I asked for a blood test, curious if I had Rheumatoid Arthritis. I was quickly shot down, and told there was “no way” I had RA, and if I did, that “they wouldn’t put me on the medicine anyway because then I couldn’t get pregnant.” My opinions were dismissed, however the hand specialist agreed to a blood test since it seemed he did not know what else to do.

A few days later, I received a voicemail saying I did indeed have the RA enzymes in my blood work. I was in shock and tears, wondering how at the age of 24 I could have arthritis. I felt even more terrified knowing RA was an autoimmune disorder that had “no cure,” and was something I had to live with “forever.” I reluctantly scheduled an appointment with a rheumatologist, who immediately wanted to put me on an immune suppressant drug that could potentially effect my fertility. I turned down the medication, left in tears, and was determined to heal myself on my own.

I spent the fall and winter of 2014/2015 with a narrow focus. I cut out all sugar, dairy, gluten, caffeine, alcohol, grains, nightshades, you name it. I refused medicine and took only natural supplements. I fiercely trained for the New York Marathon. I ran a minimum of 8 miles a day to deal with stress and sometimes up to 20 miles after a full day of teaching first grade. I forced myself to put away laundry every Sunday night and be in bed by 8:00. I thought I was eating right, exercising right, and being organized in the right way, but in reality I was miserable.

God, The Universe, Love-whatever you want to call it- will have things happen to us until we finally learn what we are supposed to. Even after a broken wrist, an RA diagnosis, and Celiac Disease I still was not in tune with my Divine Self, nor was I slowing down. In January 2015, I visited a homeopathic doctor who had a “feeling” that he needed to test me for Lyme disease. Sure enough, Lyme disease showed up through my screening. This time, I didn’t cry or flinch. I felt numb to yet another “bad thing” happening. A week later, I jumped off a cliff skiing (not as cool as it sounds) and tore my ACL.

A broken wrist, RA, Celiac, and Lyme disease were not all enough to make me stop, slow down, and take better care of myself. At the time, skiing was everything to me. It was what I identified with, it kept me sane, it was a time outside, a time alone, and a time with friends. And now the escape was gone and all I could do was face myself. My surgery and recovery process was nothing glamourous. It was painful, lonely, and I felt like I could not take one more diagnosis. Since my body was in shock from the surgery, my Lyme disease (along with three of the Lyme co-infections) reared their ugly heads.

This time, I had no choice but to slow down. I could not walk for a couple weeks. The way I fell bruised my knee bones so badly I was told I should not run anymore. Running, skiing, moving quickly-all my “escapes” and identities were stripped from me.

It was not an overnight process, and I’m still learning today, but it was during those dark, painful times I had to make a choice. I had to make a choice to heal myself. And the only way to heal myself was to love and accept myself. I accepted my autoimmune diseases. I accepted that I could no longer run. I accepted that I was single at the time. I accepted when I gained some weight before the surgery and loved myself when I lost too much after the surgery. I accepted that I made a mistake to jump off a cliff. And with all that acceptance finally came a pure love of myself that set me on the journey of whole body healing.

In time, my knee got stronger, but I knew I could never go back to my old ways of moving too fast. I finally gave myself permission. Permission that it is ok to go to for a walk instead of a run. Permission to take a nap instead of going to yoga. Permission that it is ok if your laundry is not put away on a Sunday night or if my bed is not made up perfectly.

I’ve learned it all comes down to balance. Today, my ACL is healed, but my finger is not. Lyme continues to show up in my blood-work but I feel I am on the path to healing. I learned how Lyme disease is the “great imitator”-meaning it mimics other autoimmune diseases like RA and MS. It became unclear whether I actually had RA or whether it was solely the Lyme all along mimicking RA in my body. My doctors still are unsure, and I know I will never have a medical answer to whether it is RA or only Lyme. My intuition feels that Lyme is indeed the great imitator, and I do not have RA. I do my best to avoid negatively naming all of these diseases. I find it only gives my ego more power. I feel it is better for me to accept my imperfect health and then let it go! What’s the point in thinking about it all the time or feeling sorry for myself?

My achy joints feel better, but the Lyme disease still lingers.  I’m grateful I have a doctor who treats my Lyme disease. Some days I feel great, and other days my body hurts. I take antibiotics when prescribed, as well as natural supplements to reduce inflammation. Sometimes I have kale for lunch, sometimes I have gluten-free pizza, and sometimes I have both. I believe in the importance of slowing down, taking care of myself, and eating in a way that best supports my body without deprivation. I practice mindfulness which sometimes can be as simple as a deep breath or an act of gratitude. My health is not perfect and neither am I.

Whole body healing is a journey and I am evolving along the way.

Butterflies have been my symbol of hope throughout my whole Lyme journey. The yellow swallowtail always “shows up” and I truly believe it’s a sign of grace guiding me.