One Year Ago

December 2016

 

One year ago, I was diagnosed with Lyme.

lymeheadAnd I still can remember all the difficulties I faced as my Lyme progressed from annoying symptoms to full-blown pain, brain fog, dietary issues, weakness, and exhaustion, and finally, being out of work for six months.

I can remember early on, trying to keep a semblance of routine at home and make my daughter’s lunch for school. That 10-minute job caused me extreme exhaustion, and a return trip to bed for two hours.

I remember trying to exercise on the advice of medical doctors, which never went well.  Later on in that winter, I tried vacuuming a 5×7 rug. I needed a three-hour nap after that.

I remember starting what I call my Lyme Bible.  It contained sections with each doctors’ contact information, copies of my blood work reports, diagnoses, as well as my food diary and symptoms tracker.  DataScientistJobDescriptions

I remember my husband asking me one morning, “Where is the jelly?” And I literally did not know. I couldn’t tell him, and I got upset because I knew my brain was literally fading a way bit by bit, and there wasn’t anything that any medical doctor was telling me that was helpful or hopeful.

I remember being frustrated listening to people with MD after their names giving me any number of diagnoses: Lyme, not Lyme, fibromyalgia, coxsackie, EBV, a virus…and even, “Yes, you have Lyme, coxsackie, and EBV in your blood work, but we don’t know what is causing your symptoms. Just eat right and exercise.” I’ve got letters that I’ve started that I intend to send to all these medical professionals to both ease my conscience and anger, but also potentially change how they actually address a patient’s course of treatment when they have Lyme disease.

I remember hearing about a holistic practitioner that helped a cancer patient who had tremendous results after major health issues. At that point, I was ready to find a new avenue that didn’t lead me to another medical doctor whose hands were tied against me.20160413_103853

I remember thinking during my first appointment, his methods seemed so strange and out of the box in terms of medical treatment as I knew it, and yet, after only 4 months, I was back at work full-time and able to conquer my full teaching day without turning into a puddle by 10:30 am!

I remember feeling so tired from work, I was in bed by 5:30, and still not rested to face the next day. Squeezing the shampoo bottle in the shower bothered my right thumb, and drying my hair with the hair dryer made my elbows hurt tremendously. Even driving would bother my elbows.  And reading…forget it.  After ten minutes,  I could feel my mind drifting away from the words on the page.

I remember a time last year when I didn’t put the my prized under-the-counter radio on when I was in the kitchen.  It’s presence changed from a comfort to just noise. The feeling of wanting music on had left me, and it didn’t bother me for many months that I didn’t put the radio on to keep me company.

Tonight, I connected my Bluetooth Pandora on my phone to that radio. I listened to a Martina McBride holiday channel, and I sang along to almost every song. It was  like a drug to me; I realized how much I had missed my music and I finally had the chance to enjoy it again.  I had to force myself to turn it off and go sit down when tiredness of the day trumped the music.

As I am writing this, I am thinking of how fortunate I am that my health has returned almost to normal and I am enjoying things that I couldn’t do a year ago.

What a difference a year makes!

Yours In Lyme Adventures,

TWL

 

 

 

 

 

Baby Steps Towards Healing

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It’s been six months since I started down my Lyme journey, and I’ve learned so many different ways to manage my symptoms and my health. My experience reminds me of when my daughter first learned how to walk: one foot in front of the other, slowly bobbing and weaving forward, trying to get ahead without falling.

I can remember standing at my back door this past Winter, looking at the snow piled up over my garden. It broke my heart to think that I wouldn’t be working in it the following Spring. Thankfully, I proved myself wrong. But it wasn’t without taking little baby steps every day-even when I wasn’t feeling like doing anything but laying down.20160619_093838_resized

Once the warmer weather hits, I like to wake up each morning and check out my garden. I like to see where the sun is hitting, noting which perennials are coming back to life and which ones should be moved so they get the most sun. Sometimes, I photograph my flowers, and I mentally note the progress others. On Friday, I worked at edging my garden for over an hour, without stopping to rest. I can remember when, back in the winter, I tried vacuuming a 5×7 carpet in my house for a few minutes. That minute task sent me to the couch for a few hours! So being in my garden for a good length of time, with a laborious task at hand, was not only a huge improvement, but also a sign to me that I am on the right track towards healing.

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It’s not been an easy process, being that I’ve had to seek out other natural practitioners for help. It is a costly part of my healing, since none of my practitioners take my insurance. But I’ve gotten better advice, support, and more importantly, better health over time, than what I received from my insurance-covered medical doctors that I sought out early on. My small gains in health have been worth every check I’ve had to write out these past few months.  Each month has led me down a different path to healing, one which I wouldn’t have ever encountered if I hadn’t gotten Lyme.

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I was out of work for 5 months, and thankfully, I had enough sick time accumulated that I was able get paid. I went back to visit my students and colleagues on the last day of school a week ago. It was so good to see everyone, and I burst into tears when I hugged my principal.

My kids’ reactions were priceless. Some hugged me, others were noticeably more excited and talkative with me, and one little boy just kept giving my side glances with a “Why are you here?” look on his face. It made me laugh inside, but it also made me realize my kids weren’t “my kids” anymore. They had changed so much since when I left because they had a different teacher in my place for so long. Little things that I taught them, like our snack song before eating, or reciting a chant for getting lined up calmly and quietly, seemed to have been forgotten.  They were one of the best classes of my career, and I sadly had to pass the reigns to a sub this year. It was a hard decision, but one that I had to follow through on if I wanted to get healthier.

Even though I have much more energy, I know that I am still healing and have more healing to do. I must keep on top of my food, fluid, and supplement intake every day to continue feeling better. I still have brain fog and need to write down even the smallest of items to remember or most mundane of tasks to complete. You can’t ask me where something is and expect a quick search and rescue response like in my pre-Lyme days. I am still limited in what I can eat, and it hampers going out to restaurants or when we entertain at home. We had company here last night and my husband made a dozen pizzas in our pizza oven while I ate my kale, broccoli, sausage, and garlic meal. I miss eating my favorite foods, but it is a small price to pay when I know other Lyme victims are hospitalized, suicidal, or even dead.

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I am thankful that I am out and about, and not standing in my doorway, eyeing my garden and wishing to be out there, pruning and weeding.

Even if it has meant, and continues to mean, taking baby steps to get there.

 

 

Budgeting

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Living with a chronic illness changes your life in so many different ways.

One of the ways in which I’m still trying to manage is budgeting my energy. “Just like you budget your money, you need to budget your energy.”, a friend of mine told me recently. She worded it so well, and it’s been quite a realization at how true those words have become in my life.

Prior to Lyme, going to three different family events over one weekend was normal and while tiring, didn’t wear me out to the point of needing a few days to recoup.

Now, I have to really think about how much family time or extra events are ‘too much’ and learn to say “no” without feeling guilty. Even trips to the store or naturopath need to “planned” for me. No more quick jaunts about town to pick up a card for someone or buy that needed birthday gift. I just get too run down and need to factor in my eating schedule, too. Putting off eating or not eating properly drastically impacts  how well I feel.  It seems to take longer to get back up to “normal” for me if I miss meals, don’t eat or drink as typical for me when I’m at home, or if I miss my supplement regime.

One week recently, I had a wake, funeral, dance recital practice, and dance recital show in the span of 4 days. In my heart of hearts, I knew it was going to be a long four days, and I’d pay for it later, but I just couldn’t say no to any of these events. I had lost a childhood friend suddenly, and it was my daughter’s 5-year dance recital, complete with a trophy. Saying ‘no’ to these events that were truly important to those involved just wasn’t an option for me to even consider.

But true to form, all this activity was too much for my tick sick blood and body to handle. Even though I tried to pack enough food and drink to keep up my energy, just zipping around from place to place took its toll on me. I had a day’s break between the practice and the actual recital, and boy, did I need it!

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Memorial Day weekend just passed, and it is one of my favorite weekends in the year. As a child, I loved going to my town’s parade, with the bands, the old cars, the never-ending Brownie troops, and the veterans.   I would proudly wear my red, white and blue each year, waving a flag and clapping and singing along to every patriotic song played. I still do this each year, and my ten-year old daughter has been encouraged as well to wear her colors and wave her flag proudly alongside me.

My husband has been helping with a Veteran’s float in a neighboring town for many years now, but this year, the parade was cancelled due to weather. I hate to admit it, but I was relieved. We had already hosted people at our home that Saturday night, and then we went to another family gathering on Sunday. I knew I needed a day to just recoup just from those two days, and I really didn’t have the energy for another all-day affair on Monday.

We will be going to the Memorial Day parade this coming Sunday instead. Thankfully, I will be able to rest up for the picnic food preparation, early morning drive, parade watching, and then the picnic that follows.

We’ve already been invited to a July 4th picnic. And my sister hosts one as well, although hers, I just found out, will be on the 2nd. We’re already planning on bowing out of some activities that weekend so that we can at least enjoy time with friends and family without me becoming completely worn down.

I need to budget my energy right now, like my friend so aptly stated. Next year, I hope it to be a different kind of budgeting!

Yours in Lyme Adventures,

TWL