When the Caregiver Becomes a Patient

2016 was shaping up to be a pretty fantastic year.  We were settled into the home that became ours in the summer of 2015, my husband was over the moon in love with his job, my mother seemed to be getting used to her new apartment in our home, and I was putting the finishing touches on my first book. We were finding satisfying successes professionally and couldn’t be happier personally.  And then…..our world turned upside down. 

 

In the late spring, early summer my mother began to have medical episodes that were frightening and unsettling.  After repeated emergency trips to the hospital, we were no closer to finding an answer.  It was becoming a daily distraction as I was finishing the final edits of my book. Even days when there wasn’t an “event”, I found myself waiting for the next one. 

 

Knowing that my mother was not particularly happy with her move to live with us, we had planned a week-long trip back to her favorite place; New Harbor, Maine.  After her medical events had started, I was a bit nervous about her health but comforted to know she’d be back where she is most happy. It was fourth of July week, my daughter and her beau had come from Colorado, and it felt rather idyllic.  Early in the morning on July 3, my husband and I took our dog for a walk along the back lane that ran behind our cottage.  Just before we got home, I was startled by a painful horse fly bite on my upper right arm. Little did I know that in that very instant, my life was going to be radically changed. 

 

After months of at times debilitating symptoms, last fall I was diagnosed with Lyme and Babesia (a Lyme disease co-infection).  I felt grateful to be working with a Naturopath that specializes in Lyme disease.  I try to avoid mainstream western medicine as much as possible and felt comfortable with the relationship I had established with the clinic.  I started on a therapy of herbals, essential oils, antibiotics and an anti-malaria medication for the Babesia.  I was determined to be the “model patient,” do everything I was instructed and be on the road to recovery in no time.  To me, it seemed perfectly reasonable.  I am a healthy, happy person with a strong resolve.  I had this! The medications didn’t settle very well, I was frequently nauseous but I felt confident that it was all for good.

 

But weeks later, a month later, two months later, things weren’t going as planned. My fatigue was perhaps worse not better; my air hunger made just going up the stairs a major event, the pain throughout my body was relentless.  Still, I was determined, stayed the course and “worked the program.”  I was aware that I was angry, but it isn’t my personality to focus on the negative.  Why wouldn’t I be angry?  I took good care of myself, ate healthy food, exercised, took care of others, was writing a book to help the world….why was I being sidelined from life like this?  But life is difficult.  Acknowledging that….acknowledging that “stuff happens” to good people is healthy…focusing on it isn’t, so I didn’t! 

 

Then, just before Christmas, we were out to dinner having a great time when I became aware of a growing pain in the base of my skull.  My head started to truly pound on the way home, and I went straight to bed in agony.  I slept only off and on all night, and I experienced increasing pain and pressure in my lower head, neck, ear and jaw.  Early in the morning, I couldn’t stand the pain any longer and went to the bathroom to put a warm washcloth only face.  I looked in the mirror and noticed a definite droop in the right side of my face.  I tried to not panic, looked again and smiled…..only half of my face was responding.  I then realized I couldn’t shut my right eye all the way and it was completely blurry.  A trip to the emergency room on a Sunday afternoon?  Never a good idea!  We were shuffled into a curtained cubicle while the obligatory blood work, ekg, and cat scan were ordered.  My doctor seemed more concerned about complaining that my Naturopath wasn’t ordering the right meds than addressing the issue at hand.  He confirmed my fear that I was now the recipient of a rare complication of Lyme disease, Bell’s Palsy.  Unfortunately, even when I asked about the course of treatment of prednisone, he shrugged that off and said I should just see a neurologist.  We left the emergency room with NO course of treatment. 

 

I was scared and in pain, but I don’t think the whole scope of what was happening had really settled in.  I experienced another night with little sleep and great pain; but as I got up the next morning, I realized that my face was significantly worse than the day before. The right side of my entire face was frozen with a droop to the eyebrow and mouth.  I looked like I had suffered a stroke.  I’m still trying to make my way through not only the physical pain and complications, but the fear of not recovering….80% DO recover, but far more difficult to process for me is the realization that you can do everything right and still suffer serious complications and set backs. 

 

This series of blog posts will be about my journey.  I think it’s important to write this as it happens and not wait until I’m on the other side.  We tend to filter out far too many of the raw details when time has passed and alters our perspective.  My jam has always been to be the problem solver,  the coach, the consultant.  This time I think it’s worthwhile to share it while I live it. 

 

It’s 5 am on Christmas morning as I write this.  I’ve been up since 3 am.  Sleep is more fleeting during my prednisone therapy than usual.  The house is quiet, the tree lights look even more beautiful without the ability to focus my eyes.  It’s like looking at Christmas lights through raindrops.  I have so many emotions and fears clamoring to be heard that my mind is on constant overload.  But today, my goal will be simply presence.  Presence in the moment, presence in gratitude that my son is with us, my daughter is with people that love her even if it is most of the way across the country and there is still much to be grateful for.  Making sense of what is happening can wait one more day.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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5 Replies to “When the Caregiver Becomes a Patient”

  1. Oh, Leslie.
    I am so sorry that you are suffering so…please know that I will keep you in my prayers. I am sending you a big hug from me right now!
    Love you, dear friend. Don’t give up. Be strong. You can fight this!
    Lyme disease from a horse fly bite? Never heard of this. Yikes! Explain more for me, please.
    Love you,
    Ruth

    1. I love your hugs, and appreciate your prayers my friend! It is rare to contract Lyme from a horse fly bite but it CAN happen. Sadly you can also get it from mosquitos. (My outdoor life is forever changed!!) I am the first human my Doc has known of that has had co-infections from a horse fly bit and the infectious disease control specialist had never heard of it either. I have a lot of good things in my favor…my overall health going into the crisis and my naturally positive yet realistic mindset definitely helps keep me motivated to be healed and productive. And….it’s providing me ALL kinds of things to write about, such as the way I am treated in public now. It’s quite an interesting study in human behavior. Much love to you, dear Ruth!

      1. The writing will be so helpful. My niece was the editor of Cary Magazine from it’s start for several years. One of the features was a health writer, Pam Schmidt, who began dealing with cancer shortly after she started freelance writing for them. My niece encouraged her to write through her cancer treatments, as your doctor has you, about her perspective as a health and fitness expert. It was an encouraging and educational series for so many people. Pam recovered and was in remission for a few years before the cancer came back this last year and she passed away (not at all in your cards). Her amazing ability to overcome the first onslaught, her alternative treatments, the advice she gave about health options and fitness, her motivation and resilience all helped many women who faced similar health issues, specifically my friend from childhood who was diagnosed with stage 4 breast cancer and read her articles. It caused her to seek special testing, make drastic treatment choices and she’s now 10 years cancer free thanks to Pam’s knowledgeable suggestions.

        You will not only recover well from where you are now, but in the process find out so much about yourself, and help others who must adapt to changes that come when outside forces affect their bodies, whether temporarily or permanently, so they can live their fullest life.

  2. Oh Leslie please get treatment you may not want. Antibiotic and prednisone is needed. A friend in NC went through this about two years ago, the Lyme and Bell’s Palsy, and though he’s made good recovery he has had lingering issues of some facial pain and eyesight problems. Nipping this in the bud as quickly as possible lessens long term damage to your body systems, and though natural therapy is often the best course, sometimes we have to accept that God provided more advanced treatments for a higher purpose. Find a Neuro who will honor both and understand you want to go down both paths. Then pay attention to your body and give yourself rest, which means you care for yourself first and let others pick up the care for others.

    Sharing your healing process will help both yourself and others, but pace is important. Rest, rest, rest. Then rest more. Just saying. Everyone who cares will wait.

    1. Deborah, thank you for your thoughts and care! I actually am on prednisone and antibiotics and am having further bloodwork to make sure there is no viral component. You are right…there is a place for ALL medical treatments; it is up to us to have the intuitive sense to know when it is the right time to bend your own rules. 😉 Resting is always a challenge for me, but I’m learning quickly that I need to take rest to a new level. My doctor is currently reading my book and encouraged me to write about my experiences, and I felt convicted to share them in “real time.”

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