December 29, 2007. I remember that date very well, because that is the very last day of my life that I felt well. I attended a holiday party at my boss’s house and had a wonderful time. I woke up the next morning with a terrible flu. I have never been that sick in my entire life. I grabbed the comforter off my bed and dragged it into the bathroom, where I stayed for the next three days. My friend had to come and to let my dog out and bring me crackers and ginger ale.
It had been a beautiful December in Virginia that year, unseasonably warm and sunny, with temperatures in 70’s all month. I was outside every day with the dogs and the horses, and I remember very clearly seeing deer ticks on my dog, as she was white and it was so easy to see them on her. Looking back now, I know I was bit by a tick that December.
When I came out of the haze of that terrible flu, I had a weird round rash in the crook of my right arm. It burned like someone was holding a blow torch to it. I went to see my internist and he said he thought I had shingles. He started me on Valtrex and sent me on my merry way. I realize now that this was a grave error on his part for three reasons: ) I lived in Loudoun County, VA, which has one of the highest rates of lyme disease in that state, if not the country, 2) I had the two classic symptoms – flu and a circular rash, and 3) I lived on a farm and worked with animals, so I had a very high exposure to ticks.
Soon I started having joint pain, fatigue, and crippling insomnia. My left arm was really hurting as well, but I was moving to a new apartment and thought I had strained it packing. I went back to my doctor in April 2008 and begged him for sleeping pills, because I was afraid I would get in a car accident. I got lost driving to Target one day. I became confused very easily and was doing things like leaving the stove on and forgetting the bath was running. As a woman who had been an Executive Assistant my entire life, I was used to doing fourteen things at a time. Now I couldn’t subtract from my checkbook. I thought I was going crazy!
In May 2008, I could no longer ignore how swollen and painful my left arm had become. I went back to my internist again; he thought I had an infected lymph node and started me on a course of Bactrim. (He also told me to start using natural deodorant, stop shaving my armpits, and consider getting rid of my cat!). My arm continued to get worse over the summer, and in August 2008, my doctor prescribed another round of Bactrim. I was beginning to become disillusioned with my doctor…I saw that he wrote “anxiety” in his notes at that visit…Duh, brilliant observation.
At this point my life was completely miserable. Just trying to get ready for work was impossible; I had to lie on the floor of the bathroom after I took a shower because I was so exhausted. On my birthday, August 29, 2008, the scariest thing happened…I was at a restaurant with my friend, who was treating me to a birthday lunch, and the left side of my face went completely numb. I asked her if I had a stroke. Soon afterwards, my hands and feet went numb, and I felt like someone was throwing ice water on my lower legs. I kept reaching down to feel my legs because I thought they were soaking wet. Then, the worst (and most cruel) symptom started. Ringing in the ears…why do they call it ringing in the ears, when what it really sounds like is a whistle being blown full-blast into your brain! I was seriously tempted at times to drive a pencil or screwdriver into my ear to make myself deaf. Some nights I prayed for God to just let me die in the night. I would have never hurt myself, but I wanted the agony to go away somehow.
In the fall of 2008, the first of my angels appeared…my chiropractor/kinesiologist, who told me he thought I might have lyme disease. He wanted me to go to a lyme-literate doctor to get an opinion. Interestingly, around the same time, another doctor I saw to have a mole removed took one look at me and said the same thing. But I felt so confused and conflicted…I wanted to be loyal to my internist (he went to my church and I had the whole church/guilt thing going on). But finally I was so sick I would have met with the Devil himself. I made an appointment with the doctor my chiropractor suggested. She suspected lyme disease right away, but ordered numerous tests in order to rule out other conditions…CT scans, ultrasounds, x-rays, venous Doppler tests, blood tests for lupus, painful nerve testing, spinal taps, etc. She also ordered a traditional Western Blot blood test, which showed two “bands” of lyme. Even though I didn’t meet the antiquated CDC criteria of five bands for a positive lyme disease diagnosis, she started me on doxycycline right away.
Note: Here is some clinical blah, blah, blah as to why lyme disease is so hard to detect via regular blood tests:
“Doctors usually use blood tests to make a diagnosis of Lyme disease, but several factors limit their value:
• These tests rely on antibodies, proteins made by your immune system to attack Borrelia (lyme). Antibodies may not be measurable for a month after the tick bite.
• Early treatment with antibiotics may prevent antibody formation without curing Lyme disease.
• People who are immune-suppressed may not make antibodies.
• The results of antibody testing at different labs can vary greatly.
• Deer ticks may carry pathogenic microbes other than Borrelia. These other infections will not be detected by a test for Lyme disease but may produce distinct illnesses like babesiosis, ehrlichiosis or bartonellosis that overlap symptomatically with Lyme disease.
At the present time, the diagnosis of Lyme disease is a clinical diagnosis, not a laboratory diagnosis. It requires a clinician with Lyme experience”.
Source: Leo Galland, M.D., Lyme Disease: The Perfect Storm Is Headed Our Way, April 18, 2012.
Fate stepped in again when my new doctor quit her practice to care for her ailing mother. I was extremely distraught and didn’t know where to go from there.
That’s when my second angel appeared in the form of one of my dearest friends. She suggested that I go see her doctor (who was treating her for lyme disease); I made an appointment right away. This wonderful and amazing new doctor ordered the more sensitive and more accurate Igenex blood test (from a lab in California), and it was finally confirmed…I definitely had lyme disease. At that point I was so naïve! I thought, “Finally, I definitely know what is wrong with me. I will take antibiotics and it will be gone!”
Like I said, I was naïve. I did not know of the nightmare ahead. My lyme disease did not respond to oral antibiotics, so my doctor ordered an IV picc line to deliver antibiotics straight to my heart. I had to appeal to my insurance company to approve this treatment, and to my surprise, they did. I was living alone in an apartment and there I sat, night after night, running my IV by myself and scared out of my freaking mind. (The infusion company comes out once and says, “This is how you run an IV…bye-bye!”) I remember watching every bubble come down the tube and thinking that was the one that was going to kill me. If it wasn’t for my sister, who is a nurse, talking to me on the phone every single night from Michigan, I wouldn’t have been able to do it. She was my rock. After three months of IV treatment, there was no improvement; in fact, I was worse, and the insurance company would pay for this expensive treatment no longer. What I know now (that I didn’t know then), is that if you don’t get antibiotics immediately after being bit by an infected tick, you have very little chance of getting rid of this vicious disease. There may be some lucky duck exceptions to that rule, but they are few and far between.
This was a very low point. I was still trying to work, but I was so sick my girlfriends were driving me and dropping me off at the front door because I couldn’t walk from the parking garage to my office. I was unable to function. I remember very distinctly a morning in November 2009…I was trying to put on my makeup for work, and I looked in the mirror and said, “God, I can’t do this one more day. I am giving this over to you.” At that moment, I completely and totally knew to the core of my being that the life I once knew was over. That was a scary, scary moment, but somehow I felt the peace of God wash over me. I also knew, because I was single and had no emotional or financial back-up, that I would lose everything…my job, my apartment, my health insurance, my retirement fund, my very dignity…but still, I felt a peace that I had never known. I called my doctor and told her I couldn’t go to work anymore. She told me she had been waiting for this call from me, and that I had been very brave for a very long time. She said that she was amazed I had managed to work at all, being as sick as I was. But when you are single and supporting yourself, you have to find an inner strength that you never knew you had…for there is no one else to help pay the bills.
The experience of going on FMLA, losing your job due to illness, losing your health insurance, and applying for disability is a subject that I could write an entire book on. Again, I was so naïve! I believed that in this great country, if you worked hard and followed the rules, the system would be there for you if you got sick. I was sadly wrong. I applied for social security disability and also for the private disability insurance that I had through my job…and I was denied for both. I was forced to hire two lawyers and they did win both of my cases, but the process took about 18 months…by which time I had lost my entire retirement fund paying for my living and medical expenses. I knew going into it that social security would take a long time; I had been warned of that. But I had a false sense of security that my private disability company would be there to help me through the wait. Again, I was sadly wrong. Private disability insurance companies are really thieves and criminals hiding behind soothing TV commercials showing people lying in chaise lounges by the seashore; the distain I have for them has no measure. They take your premiums with the promise of being there for you if you get sick, and then they fight tooth and nail to NOT pay you. (I know there are people who lie to get disability insurance, and they have ruined it for those of us who are truly in need, but I had overwhelming medical records showing how sick I was). By the end of that battle, my disability lawyer got more money than I did because he had to work so many hours to win my case, and friends had to take me in because I couldn’t pay the rent on my apartment. Honestly, I don’t know how the insurance company employees sleep at night. They caused me more emotional pain and anguish than I have ever experienced in my life, bar none.
This should not happen in America, but it does. Did you know that once you are finally approved for social security disability, you have to wait two years (plus a 6 month elimination period) to get on Medicare? My cobra ran out months ago, and I have not had health insurance since then. I will finally be on Medicare on May 1, 2012…a full two and a half years after becoming disabled in November 2009. Unbelievable!
Meanwhile, during the entire disability/legal nightmare, my health was still declining. In addition to all of my other previously listed symptoms, I began to feel like I was going to pass out all the time; I could not stand up long enough to make a cup of coffee or take a shower. It was a dangerous situation to say the least. My doctor referred me to an amazing cardiologist who specializes in lyme disease patients. After having a tilt table test, he diagnosed me with carditis, premature sinus node dysfunction, and chronotropic incompetence secondary to the chronic inflammation from lyme disease. On February 24, 2011, due to the severity of my sinus node dysfunction, my cardiologist implanted a special type of rate-responsive pacemaker. My pacemaker now paces for me 86% of the time. I have always been a fighter, but this permanent heart damage issue really threw me for a loop. It took a lot of counseling to get me back on the right mental track. Now I am just absolutely grateful that I have the pacemaker and that I am even alive.
Another frustrating subject that could fill a book is the topic of natural treatments that are not covered by insurance companies or Medicare. I am talking about supplements, acupuncture, massage therapy, etc. My cardiologist wants me to take a special Vitamin C supplement that costs roughly $35 a week. I also need to take several supplements that help with my chronic inflammation. I have to eat expensive gluten-free and organic foods, as processed food and chemicals affect me neurologically. I find great relief from acupuncture, lymph drainage massage, and chiropractic adjustments, all of which I usually have to pay for out-of-pocket. It starts to feel very unfair at times; people with money can receive these treatments to ease their pain, while the rest of us are left to suffer. Again, this shouldn’t be happening in this country.
One of my favorite support websites is “But You Don’t Look Sick.” There needs to be a greater understanding of people with invisible illness. People mean well, but when they say, “You look great”, I know that some of them are really thinking, “You look great…so maybe you aren’t that sick…and maybe you should be working”. Whenever that happens I have to brace myself, because I experience the Silent Scream deep down inside. They can’t possibly know that it took me three hours (literally) to get out of bed, take a shower, and make the effort to put clothes on. Sometimes after doing just those three things, I am on the couch for the rest of the day. And when it rains, I am bedridden. Someone actually said to me, “Can’t you work at home?” (No, I can’t; I can’t even balance my checkbook or figure out a recipe.) I don’t feel like a contributing member of society anymore. This makes me feel ashamed, like a criminal almost, and I isolate myself from going outside or seeing people sometimes. I read a book recently about women and invisible illness; the author said that women have this pre-wired, built-in desire to look good no matter how crappy they feel. They will put on lipstick as they are being laid into their coffins. That made me laugh; I have strict instructions for my friends to make sure my MAC Mocha lipstick is on me when the time comes! The point is…no sane person would go through what I have gone through just to be on disability. It is not enough money to live on! I can’t afford to buy my medications and supplements sometimes. I am back living at home with my parents at age 51. I am completely dependent upon the help of others. This certainly would not be a chosen path for an independent woman who worked hard, loved life, and tried to live it to the fullest.
My Life Now
The person who asked me to tell my story wanted it to be a positive and inspirational piece…you may be thinking right now that it’s been nothing but a bitch-fest. But I had to give you my back story so that you would understand what I have been through, and how I managed to put a positive spin on all this…“The Big Picture”, so to say…
The truth (and get ready)…is that I wouldn’t give my lyme disease back for anything in the world. And that is the honest to God truth! Four years ago, all I cared about was my job, my paycheck, my retirement fund, and the next vacation I was going on. Or the perfect color paint for the walls of my bathroom, the cute black pants I saw in a magazine, and the yoga pants I wanted to buy on my lunch hour. I am embarrassed by that…I was a person of no depth. Of course, I tried to be a good person, I was a hard worker, I was kind to animals, and I had some level of compassion for others…but sometimes I also did some shallow, crappy things too. I had no clue, nor did I want to, of the struggles of others less fortunate than me. I couldn’t even imagine losing everything I worked so hard for because of an illness. Then I was brought down by an insect the size of the dot at the end of this sentence.
Now I know the secret to life that people usually don’t understand until they are lying on their death beds…I know what’s truly important. Being with your family, loving your friends, enjoying the sunrise, snuggling with a pet…these are the important things.
I have a compassion for others that is at a whole new level.
The experience of letting go, and I mean really letting go, is so very humbling.
But the most important thing I have learned since I got sick is that there really are angels out there! I never knew that before! In the past four years, angels on earth have appeared to me, angels that I would have never known existed…
– My counselor…who helped me find the real me…I would have never dealt with the past if I hadn’t gotten sick.
– My doctors… who have treated me for nothing because I didn’t have insurance; some of them have actually helped me buy the medications and supplements I need.
– My chiropractor…who first suspected I had lyme disease. How many people can say that they know the person who actually saved their life?
– My acupuncturist…who also has lyme disease, and treated me for free because he knew I had no money.
– My landlord…who gave me a break on my rent because she knew I was struggling with medical bills. She is now one of my closest friends.
– My friend…who packed up my entire apartment herself because I was too sick to do it, and gave me money every month so I wouldn’t lose my car. And her husband, who helped my dad load the moving van.
– My friends…who took me in because I needed a place to go. Their kindness cannot be measured. They just weren’t taking in a boarder; they were taking on a sick person, without complaint.
– My state Senator in Virginia…who tried to help me fight the disability insurance company (they weren’t even afraid of him…LOL!)
– The woman at a local charity…who went way-way-way out of her way to find organizations to help pay my cobra payments.
– My social security lawyer’s assistant…who made an overwhelming experience bearable. She became a friend for life.
– My neighbor and friend…who handed me a check over the fence with a note that said, “We’ve got your back.”
– My visiting nurse…who is now one of my dearest friends.
– My girlfriends in Virginia…who drove me to the hospital when I got my pacemaker and sat with me all day long because my family was in Michigan.
– My family…my sister…who never makes me feel like I can’t talk to her…My dad…who has driven me across the country several times to see doctors and moved me home to Michigan…My mom…who told me to come home, even though I know this is not an easy situation for her. At a time in life when I should be helping my parents, I am a burden to them…My aunt…who simply listens to me for hours on end…My cousins and Michigan friends…it’s like I never left home!
– My three best friends (MA ,BH & JP)…there isn’t enough time or space to write about them, or words in the dictionary strong enough to describe their support and loyalty…and they know me best of all.
– Girlfriends and gay friends…is there anything better??? Hell no!
– A very special and unique man…who makes me feel attractive and desirable, when my overwhelming urge is to feel unattractive and damaged. He is the only one who can give me a couple of hours of feeling “normal”. I forget that I am sick when I am with him.
– The woman…who came to our garage sale, asked about my cane, and handed me a wad of bills when she learned my story.
– My girlfriends…who have put me in a car and driven me places I couldn’t have ever gone to on my own.
– My veterinarian…who gave me my beloved dog to be my companion.
– The people…who pop notes and cards into the mail (the real mail)…how do they know the exact moment when I need one? Opening the mailbox and seeing a card sometimes can actually make someone’s day!
– All the “friends of a friend”…who don’t even know me, but heard about me, and have reached out to offer support.
– All the people in lyme disease and disability support groups (and also all the Casey James fans!) that I have met over the Internet…some of them I have actually met in person, and some of them I have not; I may not know their faces, but I know how much their friendship and support has made a difference in my life.
The list could go on and on…people at the YMCA where I go for my physical therapy class, the neighbors I see when I walk my dog…the people in airports who help me when they see me struggling…
I would have missed all this if it wasn’t for lyme disease! So I thank it and I embrace it. Is it hard to accept the fact that I will never feel good again, not even for one moment? Yes! Do I have terrible bouts of anxiety and worry? Yes! Do I resent taking 10-15 medications per day? Yes! Am I afraid that my heart totally relies on a pacemaker? Yes! But, I can’t give up, and I won’t give up, because I have a family and friends who love me. And look what I have learned…I have let go of what my life once was, and embraced the life ahead of me. I know that I am going to do good for others who have lyme disease. I can feel it in my bones that this is the meaning I have been searching for all of my life. If I can touch one person who has just been diagnosed and is afraid, or teach someone about lyme disease prevention, or help spread awareness of this devastating illness, my life will have been worth it. And that’s what I didn’t have before I got sick…a true meaning for my life. Now I do.