Ride of my Life

It was a clammy, overcast summer morning, late in July. The kind of morning when you go outside and you instantly feel the moisture on your skin and want to hibernate in the air conditioning back inside.

Automatic sprinklers were going on neighbors’ lawns; the garbage truck was making its rounds. People were up walking themselves or their dogs. Some were even braving the humidity and running.

And I was taking my first bike ride of the season.

My husband had given me a new bike for Mother’s Day a few years ago, and I loved riding it. I’d take my daughter for rides around the neighborhood almost daily, and in the summer, I’d get up early and go for a solo ride before he went to work. I loved having my bike and even though I am not much of an athlete, I love the motion of being on two wheels.

One of the “pearls of wisdom” I received when first diagnosed with Lyme was, “Eat right and exercise.” Both of these directives proved to be the most inadequate and unrealistic advice I’ve ever received in my life, because 1, —I couldn’t eat anything of great nutritional value without being in pain and 2, –I had no energy to exercise because I couldn’t eat!

When I felt up to it, I’d try to do 15 minutes of walking in front of my television , my arms briskly pumping back and forth. But it was a boring way to exercise. Sometimes, I’d add a little running in place just to break it up. I’d set my timer on my phone and constantly check it, thinking, “When is this 15 minutes UP ?????”

But today was different.

I got up early, threw on some biking clothes and my helmet, and Rode.My.Bike.

It was short 20-minute ride, only around my neighborhood on the level streets because I knew I wasn’t ready to tackle any hills yet, but it felt good to FINALLY get out there and exercise.

My knees definitely felt creaky and achy, so I know I need to keep doing this to get rid of the Lyme bugs in residence there.

But it was a good ride, and I’m looking forward to another one tomorrow.

Yours in Lyme Adventures,

TWL

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Deadly Venom or Saving Grace- Is Bee Venom Therapy the Answer to Lyme Prayers?

 

20160714_131829I worked for kids. I was a vibrant Kindergarten teacher for 16 years. I loved creating my own puppets and lessons, and I had a loyal following every year! My students and colleagues loved a puppet that I created out of a wooden fork from the dollar store. I used him daily to teach sight words, and on Fridays, I’d invite the whole Kindergarten and special education classes to my classroom for a “show”. It was funny and silly and sometimes off the cuff, but none-the-less, it was a great way for my little scholars to learn abstract words like ‘here’ and ‘will’. They loved these lessons, and I would try to improve on my lessons each week with various props, songs, and little stickers to give to the children. Even the adults would get into the act. One of the paraprofessionals gave me different seasonal-themed bow ties to put on my puppet friend, which I still have and use each year. My principal wanted to create a theme song for him. And I loved every minute of it.

Now, I work for Lyme. I took a leave of absence from my teaching job this past January, becoming my own Lyme doctor, working towards better health. I read books and articles written about Lyme by doctors, researchers, and victims. I search blogs and websites, trying to find any new information that can assist me. I cross-check any healing therapy that seems to be too easy or too good to be true with a friend who has been a Lyme warrior for many, many years. I create my own recipes because my system is so fragile and can’t digest even the smallest amount of carbohydrates without feeling like I’ve gotten stung by bees. I limit going out to eat since I don’t have access to the foods I can eat or the 40 oz. or more of liquid I need to drink. I record and track my food, water and supplement intake each day, as well as check my blood sugar to ward off diabetes. I listen to advice from all sorts of people who are either suffering themselves or know of Lyme victims and have information to share.

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I have numerous appointments with my primary doctor, naturopaths, and up until recently, my dietician. I am always on the look out for other avenues to help me, obscure or ‘out there’ as they may be. Lyme is a smart body terrorist, so I need to be smarter to beat it. It morphs and changes and knows when you are on antibiotics, hiding in your joints and muscles, waiting for you to show your weakness so it can attack with pain, fatigue, and loss of concentration and focus. It causes multiple levels of damage to your body and brain. Everyone’s chemistry is different, so everyone’s reaction to Lyme also differs. I have to work to be sure that I keep my stamina up and reactions under control while fighting Lyme every day.

20160606_111639_resizedI write about my experiences as a therapy but also as a way to help others. I ‘post’ and ‘follow’ on Twitter, Facebook, and WordPress. I seek out ways to help the Lyme community by sharing my own experiences to educate and inform those who are misinformed, misdiagnosed, or both.

Working for Lyme has led me down very different paths to wellness. My most recent experience has informed me about Ellie Lobel and Bee Venom therapy (BVT), which is pretty ironic, considering that is how I describe how I feel when anyone asks what my inflammation feels like! She was a scientist before being bit by a tick when she was 27. A chronic Lyme sufferer for 15 years, she was in complete organ failure and was on the road to her death. She had moved out to California, and had unexpectedly been stung repeatedly by a swarm of bees, which turned her whole immune system around. You can read more about her story here:

http://mosaicscience.com/story/how-bee-sting-saved-my-life-poison-medicine

She now travels around the country, educating people on using bee venom from live bees to combat Lyme disease.

This seems like a ‘too good to be true’ type of solution, and yet, if it worked for Ellie after 15 years of living with the ravages of Lyme disease, could it work for me? And what would my results be after having only been dealing with Lyme for almost a year versus her 15 years? Would my results be quicker, or would I have an adverse reaction to the venom?

According to Ellie, you need to start a detox process prior to starting actual stinging, which outlines on her Facebook page. Additionally, you need to have an EPI pen and Benadryl available at each stinging session, just in case. Her method is very controlled and specific, which is in an effort to both kill the Lyme as well as limit the herxing reaction that will come afterwards as the venom works its way into your system. If you are unsure how you will react to the bee stings, you do a test sting first. After the initial test sting, you add one more, and then you increase the stinging by two’s, slowly adding two additional bee stings over time, so you are up to ten stings in one sitting. OUCH! Depending on your herx, you may stay at only two stings for several weeks. You only add more stings as you feel you are ready. And you continue to use your detox protocol in addition to the stinging routine. Since this is a controlled method for killing bacteria, you sting 3x a week, which allows you the weekend to also detox and recoup. Stinging is also very specific on your body: one inch on each side of your spinal column, spaced out up and down, to allow the venom to travel through the nerves to your extremities.

Many people across the country and the globe have experienced success with BVT for centuries, and for a variety of illnesses. And yet, I am torn with trying this method, because I know that with every plus, there is a minus. On the one wing, if I can contract an illness by an insect, why can’t I utilize another insect’s natural body chemistry to combat it? Makes sense, right? But then I on the other wing: what if BVT doesn’t work for me? I want to know about any anomalies in BVT and Lyme disease before I get involved with the whole process. With my luck, I’d be the one person who doesn’t take well to BVT and have an adverse reaction that won’t let me live to tell about it.

I am still working for Lyme, and I have found that my work with my diet and whole food supplements have started to change my immune system. I have more energy, my brain fog is slowly lifting, and my nails are no longer thin and brittle. Perhaps a little more work with the bee venom will set my immune system completely straight. Or perhaps it’ll set me back another six months! I still want to research it a bit more before I buzz into the BVT hive.

Have you utilized BVT to treat a chronic illness? What have you experienced?

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.

 

 

Unconventional Treatments Challenge Your Medical Care And Thought Processes

 

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I grew the second eldest of five children in a middle class home. I wasn’t a sickly child, and my parents made sure I ate right and went to the doctor’s when I needed to for appointments, or if I became ill.

As a teenager, I got a job working in a health food store. I wasn’t really a big health food nut, but I liked the atmosphere of the store, my boss and the people that worked there were wonderful to me, and I did purchase some of the products. I loved the Martinelli’s apple juice, it’s golden nectar housed in glass apple-shaped bottles. I’d purchase Xylitol gum, carob coated goodies, or nuts to chomp on. Some of the product names like Kiss My face and Nature’s Way enticed me , but I never really purchased personal products. There were many regular costumers who would buy all sorts of vitamins and organic food products at that store, and the owner and many of the employees had specific expertise well beyond my sixteen years.

The worst medical issue I ran into as an adult was developing gestational diabetes with the pregnancy of my daughter, and even that was managed with insulin and then pills afterwards.

This past December, however, my life and health took a spiral downward when I developed severe joint and muscle pain and was treated for Lyme for one month with Doxycycline.

I initiated numerous doctors’ visits with specialized doctors–a rheumatologist, a neurologist, and two infectious disease doctors–because I wasn’t happy with the minimal level of my improvement with each passing week. Each doctor gave me a different diagnosis ranging from “It’s Fibromyalgia. Take this Lyrica.” to “You just have to wait and see.” to “We don’t know what is causing your symptoms. Just eat right and exercise.” My insurance was paying for these vague or totally off-base diagnoses. Frustrated, I’d basically hit a plateau, and I wasn’t back to normal. I was out of work, tired, and in pain. And yet no one in the mainstream medical community seemed to really want to help me. If their hands were tied, they weren’t telling me. I was left scratching my head and searching for answers elsewhere.images

In March, I’d found a naturopath and a dietician who really assisted me more than the prescribed antibiotic treatment, and yet, I was still experiencing fatigue and pain that was directly influenced by what I consumed. It wasn’t enough for me to just have some good days and some bad days. Prior to this happening, I had a strong teaching career with an active family life. All that changed with Lyme, and I was merely a shell of who I used to be within a matter of weeks. I wanted to get back to my normal, active self. And yet, even with the supportive help of my naturopath and dietician,it seemed like such a far reach to get there.

In my graduate school days, we learned about synchronicities in life. The idea that ‘things happen for a reason’ and the experiences you have that seem like coincidence all lead you down a path that you may never have expected or planned. Call it fate, God Winks, signs, whatever. I’ve experienced many of these synchronicities since my Lyme adventure began in December, leading me to new ways of thinking about my health and medical care.

My most recent new learning has come from a place called Holistic Wellness Alternatives in Yorktown Heights, New York.

I was led to this place by my husband and a chance conversation with a recent acquaintance.  He was speaking this man about my recent issues with Lyme. This man in turn shared about his friend’s success as a client of Holistic Wellness. This particular cancer survivor experienced wonderful results from Dan Court, the owner and practitioner, so I called and made an appointment.

After speaking with the client liaison who had been misdiagnosed Lyme for four years and now WORKS at the place, I figured with yet another coincidence, it’d be worth a try.  But it wasn’t without its glitches; they rescheduled 3 times!  Dan had injured his ankle and his orthopedic had very limited hours.  By the third phone call, I was feeling a little desperate to get there and experience some of his all natural magic. At least the last call was just to make the time later on my scheduled day.

The office is an hour and a half away from my home in Connecticut. I drove down the Merritt Parkway all the way and almost had a panic attack when I saw the sign for the Tappan Zee bridge!  I hate going over bridges if I am driving. Thankfully, my faithful companion, my GPS, directed me to get off the exit before the bridge.  While my appointment was scheduled for 1 1/2 hours, Dan spent 2 1/2 hours with me. It was a pretty unique and eye-opening experience.

I had completed several forms for the appointment that were analyzed by a computer, and we spoke for at least an hour about my issues, the practice, and Western Medicine versus Indian and Chinese medicine. Based on my paperwork, I was having issues with my sugar handling (no surprise there!), my endocrine system and my liver. After discussing my test results, he performed a muscle test, which is based on Chinese medicine. It is designed to test the energy levels in the body to see the strength and weaknesses of the organs.  Dan also uses muscle testing to determine what compounds are useful or not useful to the body. It was  very unconventional in comparison to what I am used to experiencing at the doctors who practice “Western Medicine”.  I wouldn’t have believed what was happening if I hadn’t experienced it myself!

To start the test, I lay down on a table and lifted my right arm, pressing it gently against his left arm. He was pressing and tapping against the muscle of my extended arm, and with his right hand, he was pressing against my organs.  If my arm went down, it meant the organ was weak, if it stayed up, the organ was strong.  When he got to my stomach, he said, “OH!!” as my arm went down.  It was so freaky! ( I had told him earlier that my stomach seemed to be the only organ I wasn’t having trouble with…I guess I was wrong!)

He then put little vials of different compounds, minerals, and toxins on my stomach to test my body’s reaction.  Again, with different bottles, my body reacted and my arm would either stay stiff or fall down. With a particular one, Actonex, I could actually feel my stomach muscles getting tighter with the vial resting there on my stomach.  It was so wild! And my stomach still remained tight several minutes afterwards.

So, after 2 1/2 hours, I walked out of there with three additional supplements to try for my issues with sugar, endocrine system, and liver, and another appointment scheduled for June.

It will be very interesting to see what happens at the next appointment. And I’m looking forward to it.

Maybe I’ll learn something new that continues to challenge my thoughts about medicine and holistic care.

And maybe I’ll be closer to healing.

Yours in Lyme Adventures,

TWL

 

 

 

 

 

 

5 Ways To Be The Best Lyme Warrior You Can Be

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1. Documentation Is Your Saving Grace

When I first became ill, before even seeing anyone who really helped me, I started what I now jokingly call “My Lime Bible”.  It’s a green binder (I want to get a Lyme and tick photo to slip into the clear, plastic front cover….) that is sectioned off with pocket files, one for each doctor, specialist, dietician, or practitioner. I have a separate pocket for blood work results. I also have a pocket with general information about my health prior to my illness as well as monthly changes, positive or negative.

Additionally, I created a table in Word where I record daily my food and liquid intake, with measured amounts, as well as any reactions I had. I note exercise and daily supplements and amounts as well. I make hard copies of this to bring to appointments as needed. Sometimes this information changes, so it is important to note what date supplements were added or stopped as well as reactions that occurred.

I take a loose leaf notebook with me to every appointment, and put all my notes in the corresponding pocket. It’s impossible to remember every thing, so this is a quick way to help me and gives me a system to check back if I need to.

I keep a post it note with the name, address, and phone number of the specialist on the front of each pocket for easy reference as well. This was especially helpful for me when I had to go see a neurologist and was having difficulty reaching the office over the phone with the number they gave me. When they called me on a different line, I jotted that number down as well.

Little things like this help streamline my treatment and make it easier to share my complex history with new practitioners.

2. Know And Listen To Your Body

When you are struck with a chronic illness, your body has amazing ways to tell you when something is or isn’t good for you. Learn to listen to your body and respond. Back to back activities for me right now is a recipe for disaster, so I have learned to really pace what extra activities I can do.  I’ve come to realize my health is more imporant right now than being sure that I attend every family get togther.

If you feel tired, say not to family and friends.

Even if you anticipate being tired, say no to friends and family.

Leave from events early if you need to.

Eat and drink what and when you should to avoid getting more tired than necessary.

Get at least 8 hours of sleep a night; 10 hours is best.

3. Brain Fog Strategies

I was so distressed early on when I realized that my brain wasn’t functioning like normal. I was used to having a ‘ticker tape’ running in my head of things I needed to accomplish each day, especially on the weekends. Now, I realize that is just not a good option for me anymore.

Instead, I use little strategies to help me remember things:

Stay in one area of the house to complete a task before leaving the room. Many a lunch was left unfinished before I started doing this!

Use post-it notes for reminders like : switch the laundry or empty the dishwasher. Display them in a prominent place where they will likely be seen.

Tape invitations next to the calendar as well as write the information down on the corresponding date.

If your store offers this service, order groceries on-line and  have them delivered or picked up when scheduled. This both a time and energy saver for me. The store I use also saves my favorites and my last order, so I always go to those sections of the website first to see what I need before adding new items.  This helps me remember to order staples like milk or eggs, which I may have in my head to do, but oftentimes, I’ll forget, because I get sidetracked looking up other items.

Write due dates for  library books right on the calendar.

Focus and tackle one small cleaning job at a time if you feel up to it.  Starting two or three is too taxing on the memory and the body.

4. Food Can Be Your Best Friend Or Your Worst Enemy

Remember my Lyme Bible? Over time, I was able to see what foods caused what reactions in my body. It was so disheartening to me to find out that I was having issues with almost every part of the food pyramid: dairy, carbohydrates, fruits, nuts, and nightshade vegetables. But I’d never know this if I didn’t keep a food journal on the advice of my naturopath and dietician.

Just as an example, I was drinking lemon water for the longest time, thinking that it was a healthy way to detox my body. One day it dawned on me that lemon was a fruit, and that was probably why I was experiencing a light stinging sensation over my whole body! Sure enough, once I just switched to regular water, the stinging subsided. I felt even better once I started adding green tea into my diet.

Becoming a label reader was really important for me. I read many posts about Lyme warriors eating gluten-free processed products because they are staying away from wheat, and I cringe inside. Gluten-free doesn’t mean sugar-free. In fact, if you start to read and compare labels, you will see that many gluten-free products have just as much sugar as regular wheat produced products! You are just feeding your little Lyme friends by eating gluten-free processed food products like breads, cereals, and crackers.

A few guidelines that have helped me:

Stick to eating whole foods, not packaged or processed foods.

Cook in olive oil.

Drink only water or tea that you brew.   I drink 40 oz of water and/or green tea per meal, and another 10-16 oz in between meals to total close to 100 oz or more of fluids a day. The green tea seems to help me greatly with inflammation.

Eat at least 4 – 6 oz of protein for each large meal to help sustain cravings and maintain energy levels. I typically eat 5-8 oz of protein.

Use supplements that are made out of whole foods and not synthetic compounds. Talk to an experienced holistic practitioner or naturopath about the important difference between the two.

 

5. Reach out and Touch Somebody’s Hand

The best information I received about how to heal wasn’t from anyone with an MD after his or her name, it was from people who went through Lyme, are going through it, or know someone with Lyme. Also, natural practitioners and a dietician helped me greatly. Don’t try to re-invent the wheel. There is so much information out there, you need to work smarter, not harder, when you have Lyme.

Ask friends and family whom they recommend for a naturopath, holistic practitioner, dietician, or LLMD.

Research all natural cleaning products, shampoos, and body cleansers, toothpastes, etc.  to find ways to limit more outside toxins entering into your body.    Some companies will send you free samples to try if you ask! Dr. Bronner’s sent me free many free samples of their products, and I’ve discovered what compounds from their line my skin can tolerate as well as which ones aren’t safe for me.

Keep in touch with family, friends, and co-workers either on the phone or by email. These little connections can help you to keep a positive attitude even on a bad day.

Send cards to friends and family via snail mail.  It’s nice to receive letters from people, and it’s equally as nice to send them out, too!

 

And never stop learning. Your health depends on it.

Work Smarter, Not Harder

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Today, the weather is beautiful outside with no humidity, and I’m feeling relatively normal for me, so it’s a ‘cook in bulk’ day today.

I was advised that I need to do this, since I have such a limited diet and must prepare fresh meals for breakfast, lunch, and dinner. Every. Single. Day.

It’s taken me a while to figure out what I can eat as well as how much I should eat. I also know that once I start a task, I have to stay in close proximity in order to finish it. Otherwise, the short-term memory function in my brain shuts off, and lunches are left partially complete on the counter, laundry is left in the washing machine for days, and animals don’t get fed.

So, I pulled out the chicken, bacon, and tea kettle to made my bulk food. After putting the meat in the oven, and turning on the timer, I went back to into my happy little office to working on a few writing projects.

My attention span is short and quick, like the squirrels that zip up the oak and maple trees in my yard. Writing work is interrupted by taking my Scrabble and Dice turns, checking my Twitter, Facebook and Word press accounts, reading and perhaps following random writings of bloggers, and responding to anyone that comments on a post or follows me. I get up to meander around the house, check on my blooming perennial garden outside, open a few windows, put some odd objects left on the counter or dining table away, water my plants. It’s like I have ADD with a hefty dash of Alzheimer’s sprinkled in. Quite a combination.

I  smelled the bacon instead of hearing the timer.…triggering me to get up and go back into the kitchen. The meat was done.

I decided today to actually cut up all the meat before storing it, since I always cut it up when I eat it in one of my three main kale and meat combinations anyway. Smart, right?

My green tea is brewing in the kettle. I like to keep a glass container of it in the fridge to drink so I have some variety between tea and water. My new batch for today will be ready to drink.

I also have some fresh kale that I need to chop in my Ninja. It’s a pain to do, but it definitely helps having it all ready to toss in a salad or a pan of olive oil. And I recently discovered you can kale and brussel sprouts frozen, too. Victory in the kitchen will be mine!

 

Now if I could just remember to close the cap on my water bottle next to my laptop….

Yours in Lyme Adventures,

TWL

Losing With Lyme Makes You A Winner!

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I grew up and still live in Connecticut, where Lyme disease was first discovered in 1975. I just recently heard through a cousin about a connection between lab experiments at the Plum Island Animal Disease Center in New York and Lyme, Connecticut. Smaranda Dumitru writes about the possible connection and the medical community’s attentively blind eye approach to this rampant disease, on the State University of New York at New Paltz’s website, Tick Talk.

Whether you believe in the Plum Island/Lyme disease connection or not, according to the CDC, over 300,000 people are diagnosed each year.

Even though I had heard of Lyme, Connecticut, and I had heard of Lyme disease, I was completely ignorant of what it can do to the human body until I contracted it.

Having Lyme disease has opened up my life to so many new discoveries about myself. One of the greatest discoveries is unlike that awful meal at your favorite restaurant or your idiotic ex-boyfriend, Lyme disease is a lasting, every changing relationship that never gives up on you!

It’s not all that dreadful–you really can benefit from having Lyme disease. Below are some of the positive losses that you can experience living with Lyme.

Hair loss

You can save a lot of money on hair coloring, cuts and shampoo.

Memory loss

Now, you really have an excuse for not sending in your child’s field trip money or why you didn’t reply to that birthday invitation!

Energy loss

Now, your spouse or partner can do all those mundane and annoying jobs like wash the windows and empty the cat box.

Job Loss

Yay! All your dreams about not dealing with unrealistic demands and crazy coworkers have come true!

Weight Loss

You can’t eat your favorite foods, but you sure look good in those jeans that used to be too tight!

 

Some other benefits of Lyme disease are you always get complimented on how well you look, even if you feel awful.

You have a bon-fide reason now to stay at home in your jammies and be lazy on the couch.

imagesYou turn into a little detective, honing your research skills to find new treatments, new doctors, new protocols, and new recipes to try.

You reach out to complete strangers for answers and information, willing to try even the most obscure of methods to ease your symptoms. And some of these strangers become new friends.

You really get to know your body and how it reacts to different compounds and foods.

And you find healthier ways to keep on living.

Yours in Lyme Adventures,

TWL

 

http://www.cdc.gov/lyme/stats/humancases.html

https://sites.newpaltz.edu/ticktalk/social-attitudes/story-by-smaranda-dumitru/

 

images from Google images

Smooth

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They slip down my throat,

One by one,

A chaser of water or tea.

 

Following the esophageal path to my system,

My brain and body

hopelessly await big changes

with each oblong or circular

dose of professed natural magic.

 

But that one pill that isn’t smooth,

Is cut into two.

It chokes me

Gags me

Brings tears to my eyes

And makes my heart skip a beat or two until

3 swigs of water get it down.

 

 

Why can’t they just coat the damn thing?

 

 

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