Best. Words. Ever.

I’m pretty sure that the best words ever strung together are, “It is our pleasure to inform you that the Committee has approved your application.”

I’m in! I finally get to finish the medical education I wanted so bad when I was younger. It hasn’t taken the form that I originally thought it would, as I’ll hopefully be finishing as a Nurse Practitioner, but I’ll be helping patients just as much.

So why this road, considering I earned my Bachelor’s degree back in 1995? Because my LLMD (Lyme Literate Medical Doctor) urged me to finish and “join her practice.”

I’ll never forget that day. It was late October or early November of 2013, and I was in her office discussing various metabolic processes, and she just interrupts me, saying rather decisively, “you need to finish your medical education and come work with me.”

Now, she didn’t say “for me,” she said “with me.” I was bowled over by the mere suggestion that she thought I could be one of her peers. Especially since I had spent the last few years trying to get doctors to understand that I was sick, not depressed and lazy.

I didn’t sleep for 4 nights. I racked my brain trying to figure out if I could make it happen, how long it would it take, how old I might be when I finish. And so at our next appointment, I asked about finishing as a PA, since it would be a quicker route, and I could get to work that much faster. (That, and I was not interested in sitting for the MCAT exam a second time.) Doc C indicated that she strongly suggests I avoid the PA role, as “it would constrain the scope of my practice.” That, and “if she (Doc C) ‘dropped dead,’ the practice couldn’t continue,” since I’d have to move on to work under another physician. And once again, I was bowled over by Doc C’s belief in my ability to really help people, and her desire to have me work with her.

So here I go again. I begin the clinical component of the Nursing program in the Fall, and I have 4 classes that I need to complete before then. I’m not sweating it. Academically, I’ve always been strong. My only reservation is that I may not be fully recovered by the start of Fall classes. Looks like I’m going to have to ask Doc C to pull out the big guns so that I’m ready.

<insert happy dance here>

Lyme Disease Patients: The modern Lepper?

In the interest of getting all my most significant reflections on my experience with Lyme Disease in one place, I am reposting this entry, originally written in June of 2013.

I ask this because of how medical professionals seemingly want no part of treating those who have been infected with Lyme Disease.

I went to my doctor on Wednesday, who diagnosed me with Lyme in April, with news that the current treatment hasn’t brought about the improvement in my symptoms that she thought it would. I was taking 3 antibiotics, along with several supplements and vitamins. When she learned that my fatigue and pains had not improved, she was a bit perplexed as to how to continue.

We spoke of two things: penicillin injections every 2.5 days and IV antibiotics. Dr. C said two things. One, that insurance will not cover IV antibiotics for Lyme, and two, if she were to prescribe such a thing it would send up a “big red flag” and risk her being reviewed by the medical board and could lose her license.

Treatment for Lyme is controversial. The deciding body of doctors that have put forth the protocol for patient treatment are allegedly on the payroll of the insurance company. Or so I’m learning from various sources on the subject.

So, we decided that injections would be our next step, along with more blood tests to see if there was additional tick-borne infections that may be complicating my recovery. She hesitated, because I would need the injections every 2.5 days, and since her office is more than an hour from where I live, it was impractical for her to give them to me herself. She asked if I knew a medical professional in my community that would be willing to help deliver the injections, or at least demonstrate to my husband how to do so. I assured her that I did know people, and that if I were a bit more flexible, I could probably give it to myself, since I have the training to deliver such an injection. Sadly, since I’ve been suffering, my flexibility has declined, and I am unable to give myself a shot in my upper glute.

She gave me the script, and after visiting 4 pharmacies, I finally found one that would be able to fill the script for me. I also made a phone call to a few friends in the medical profession that I thought would be willing to help. And when I got my first taker, I was very happy. But hours later, I got a second phone call, in which both she and her husband (a nurse and a P.A., respectively) backed out.

She tried to explain herself, albeit nervously, saying at first that the prescribing should have educated my husband on how to deliver the injection. I let her talk a bit, and in the process discovered what I believe to be the real reason: neither she nor her husband has treated Lyme patients with antibiotic injections, and is not comfortable doing so.

At that point I knew I was on my own. So, I began reviewing how to give a proper IM injection in the upper glute, and even found a youtube video that was helpful to my husband. Luckily, he’s comfortable around most medical procedures, and having grown up on a farm where basic vet care was done by the family, was at ease delivering injections.

And tonight, I got my first injection, and will continue to get them for the next month. And I daresay he did a fine job.

It saddens me how most Lyme patients are left to fend for themselves, both by the medical community and insurance agencies. If you are curious about Lyme disease and why its diagnosis and treatment is so controversial, there is an excellent documentary on it available for free on hulu.com called “Under Our Skin.”

I said I wouldn’t, and I didn’t…

After having a day like yesterday, one where I was racked with pain and finally let the tears fall freely, I like to brush myself off and remember that my life won’t always be this way. I will find relief, I will be healed. It’s going to take time, and I need to persevere.

When I was finally diagnosed almost a year ago, I made a promise to myself that if I ever get well, I won’t waste a single day.

I briefly saw what my life was like before I got sick, very recently. For a few short weeks, I was so much better. And I didn’t waste it. I can look back on those few days and be pleased with myself that I didn’t waste those moments.

Did I spend my time cleaning my house? No. Not more than absolutely necessary. I didn’t wash walls or clean drapes. I didn’t tear apart closets or move the fridge to clean behind it. Oh sure, I cleaned toilets, and bathrooms, and dishes, and dusted and vacuumed, laundry and other necessary stuff, but nothing that I used to consider deep Spring cleaning.

Instead, I went out in the sun more. I cooked more. I baked with my daughter more. I walked. I danced in my living room. I chased my niece at the park. I spent time with friends and chatted over coffee.

I made love more.

And I’m actually quite proud about all of that. That’s what makes life good. That’s what I want to remember about life when I finally leave this world, whether it be today, tomorrow or decades from now. I want to remember that I didn’t waste my time, and made memories instead. I took each day and lived it like the gift it is.

When No One is Watching

I wrote this piece almost 6 months ago, and I find myself in a very similar place today. I’m tired. But I’m not just suffering from the fatigue common to so many Lymies, I’m tired of putting on a brave face. I’m tired of smiling when I hurt so much. I’m tired of downplaying all my symptoms to folks who ask how I’m doing just so I don’t sound like I’m complaining, or that I’m a hypochondriac, or worse. And truth be told, I’m tired of hearing my own voice whine about the pain, and the GI issues, and the brain fog, and the exhaustion. Most days, I attempt to force myself to believe I”m doing better, and I’ll be ok today.

And then there are days like today: when my daughter will come in for a hug, and I push her away because I ache so much all over that the mere weight of her arms around me causes more pain. And o I have to follow her into her room, as she’s crying, and then I cry, and apologize profusely that her mother isn’t well. And so I sit here, blinded partly by tears and partly by rage, writing.

And so here it is:

When nobody is watching, the smile fades from my face.

When nobody is watching, the spring in my step disappears, and I trudge along painfully.

When nobody is watching, I give myself permission to grimace from the pain of simply moving.

When nobody is watching, my mask, indeed my entire costume, comes off.

Trying to stay positive in the face of a chronic illness can be hard, and I typically don’t let many other around me see my struggles. Friends will inquire about my well-being, and I usually give some spiel about how I’m so happy to have a diagnosis, or a doctor who listens, or that I can actually afford treatment when so many others cannot.

When I’m at my worst, at most I’ll just say I’m having a bad day, or something to the effect of “two steps forward, one step back, doncha know!” and feign a weak smile.

The truth is, I’m just not feeling well lately. I’m feverish and achy again, and the fatigue can be almost overwhelming. There is so much I want to do, dreams that have been reignited and begging to be fanned into a full flame… And I sit here, betrayed by my body, wracked with an infection I can’t seem to beat.

So if you really want to know how I’m doing, don’t ask. Just watch me when I think no one is around…

Wednesday March 12, 2014

One month ago today, I found myself nearly skipping into my LLMD’s office. I was feeling completely renewed. Reborn. It had been nearly 9 months of nonstop treatment with a mixture of antibiotics and herbal supplements, and a long road, but I was feeling so so good. And upon seeing so much improvement, Doc C decided to take me off all my scripts, and leave me on only 3 of my herbals.

My smile when I left her office was at least mile wide.

I didn’t see the storm clouds on the horizon, but they were forming. By the end of February, only two weeks without meds, I was suffering horribly. I began feeling dizzy and fatigued, and I had headaches and my muscles and joints began to stiffen again. I had gone from dancing in my living room just out of sheer joy, to barely being able to walk without pain. But I refused to believe it was the Lyme and the co-infections. I swore up, down and backwards that it was just hormones. I bargained with God that He please just let this be a sign of an upcoming cycle, or hell, even peri menopause.

What gave it away, what undoubtedly told me it was Lyme, was when my neck and shoulders began to ache. I couldn’t deny the very symptom that was one of the first markers of the disease when it was coming onto the health scene in Connecticut. So I begrudgingly emailed Doc C, and within a few days I was put back on all my herbals, another antibiotic, and two anti-malarial drugs.

It’s about a week since I’ve started all over, and I can feel some improvement. But it’s come at a price. The meds make me horribly sick to my stomach, and while I do my best to stick to a “Paleo” diet, I’ve had to include some grains (like quinoa and rice) just to give my stomach a base for all those meds. And while even that is improved, there i still a very fine line I tip toe on between eating too much and eating just enough to keep my stomach settled enough to accomplish something during the day.

I continue to keep the faith, and be grateful for what I can do. I know other “Lymies” are suffering far worse than I am, and some don’t have the luxury of good health care. I will continue to write about my progress, but will also include random notes regarding the controversy that is Lyme Disease, and my plans for the future. And they’re pretty big plans. And a long time coming.

Soon.

Soon.

A little backstory

Last year, around April/May-ish, I finally had a diagnosis. I finally had a name to cover all the symptoms that plagued me. Fatigue. Aches. Constant low grade fevers. And oh so many more.

Three doctors before Dr C just told me I was getting older. Or fatter. Or more depressed. Not a single one listened to the sequence of events. I didn’t get sick because I gained weight. I gained weight because I got sick. No one heard me when I told them that I danced. Or that I enjoyed marital arts. Or hiked. Or rode horses.

Three doctors looked at me, over the course of more than 3 years, and saw me as another overweight, almost forty year old woman. They just assumed I was getting lazy and depressed.

Dr C knew better. She listened. And after a few tests, we had our answer: Lyme Disease and co-infections of babesia and bartonella. I was thrilled.

I was thrilled to finally have an answer, because surely, this was curable. The CDC would have you believe that 2-4 weeks of doxycycline will fix you and you’d be right as rain in short order. And I’m here to tell you that the CDC lies.

I’m still not certain how I got bit, or where I got bit, but I have my suspicions. But none of that matters now. All that matters is that at least I’m fighting toward something now, instead of fumbling in the dark.

This blog will cover my journey toward wellness. And hopefully my journey toward becoming another medical professional that I may become another soldier in the fight to get Chronic Lyme Disease recognized by the medical community at large, and help patients down their own path to health.