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

 

 

 

 

 

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To Post or Not to Post?

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It’s very easy these days to connect with people on social media.

The Founding Fathers could never have anticipated the global expanse of technology, catapulting the ideal and exercise of freedom of speech into the hands and minds of millions upon millions of people across the globe every day. And yet, they would also appreciate how one word, one sentence can spark love or outrage over any given situation.

Look at the death Muhammad Ali. He was a global figure, larger than any boxing ring he ever competed in, and the love for him followed him until his death. His religious views and penchant for metaphors both alienated and drew people to him. Newspaper accounts, Twitter accounts, and Facebook pages were ablaze with his image and famous quotes when he passed. Articles were written and shared. And past interviews were also viewable online. It’s an amazing time we live in, where we can live and relive history all at the same time, in a moment’s notice.

Look at Bill Cosby. Revered by millions, now his whole life’s work has been cut to shreds because of allegations of rape over 30 women.  My whole perception of him has changed from a smart, funny and progressive thinker to a manipulative predator. I enjoyed his comedy and grew up watching the Cosby Show. But now, after watching interviews and investigative reporting shows, and reading news articles from former colleagues of his, I see a different side of him that he didn’t project to the masses or even to those closest to him. He showed this private side only to his victims behind closed doors, where he felt protected and in control in the most evil of ways. I feel for his victims, living with the harshest of sentences before he was ever even brought to justice.

And the latest in the news: Brock Turner, his father’s letter to the judge and the victim’s response. Social media has allowed people the freedom of expression, but it also has opened the door to being held accountable for that freedom of speech. In the Turner case, his father wanted to protect his son from a “20 minutes of action”. Guess what, Dad? What your son did to that woman was called rape, not “20 minutes of action”,  as you so ignorantly stated. Put yourself in her parents’ place. What if it was YOUR DAUGHTER that was violated? What would you expect the law to do to protect her rights? Her life? Her future? Better yet, what if your SON was raped? Rape happens to men and women, but you probably didn’t know that.

The victim’s eloquent, tragic, and intelligent response to his letter and his son’s own testimony will go down in rape advocacy circles as a brilliant document worthy of court case precedent. Brock Turner’s victim has more grace, sensibility and intelligence than his father or the judge in this case. And we as media voyeurs can see clearly how each person in this case has been effected by the actions of Brock, the judge, the father and the victim. We have front row seats to the judicial system and how the warped thinking of male versus female social stereotypes interplays with court decisions for felony crimes against women.

Brock’s victim gave us a crystal clear picture of what she went through during her whole experience from the time of the assault to how her life was dramatically changed a year afterwards. Her words were poignant, revealing, heart wrenching and honest. Her letter was so disturbing to me both as a mother, a teacher, and a woman. She was the victim, and yet she still had to advocate for her own safety and well being, even after the assault and trial had taken place. She will continue to have to advocate for herself for the rest of her life. And that is the most tragic part of this whole awful “20 minutes of action”.

I hope Brock lives with the shame and guilt of his actions. And I hope Brock’s father reconsiders supporting his son’s inexcusable “20 minutes of action” against an incapacitated woman.

To post or not to post? If you goal is to educate and inform, post. If your goal is to protect your child from facing consequences, I’d highly reconsider.

image from Google images

 

 

 

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