9 THINGS YOU WON’T SEE POSTED ON MY FACEBOOK PAGE ABOUT LYME DISEASE…UNTIL NOW

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When I began treatment 6 months ago, I made a decision to share my successes publicly, via social media and blogging, with my friends and family.  I had hoped to paint a picture of someone who could overcome the adversity in her life and emerge changed and victorious.  The truth however is that recovery is very tricky, with lots of twists and turns along the way.  There is much trial and error involved in finding a treatment strategy that will yield even slight improvements.  I often do not post about these difficulties, shielding my friends and family from seeing the full spectrum of just how destructive this illness is.  After reading a recent statistic from the online medical journal PLOS that Lyme Disease is 6 times more prevalent than AIDS in the US, I knew I had to convey the most realistic image of what battling Chronic Lyme Disease is really like.  With Lyme Disease becoming a global pandemic, my story could very easily be the story of you or someone close to you.  So here ya go.  The 9 truths about this illness you won’t see mentioned on my Facebook page…until now.

1.  I am still homebound more than 75% of the time.

Since I have chosen to really only reveal the moments that I feel are celebratory in nature, no one sees the moments where I am too weak, fatigued or in too much pain to get out of bed for days and sometimes even weeks.  I am not a partaker in the selfie craze and don’t post sick picks.  Believe me!  Although you are not seeing pics of me in the throws of my illness, I am still very much in the midst of fighting this battle and unless remission comes to pass, I will likely be fighting it for a very long time.

2.  I am still very isolated by this illness

As you can imagine, since I am primarily homebound, the majority of my time is still spent alone.  Only on a rare occasion will I feel well enough to see someone in-person.  I don’t say this to invoke pity but rather to encourage those who may know someone who is  chronically ill to reach out to them from time to time.  It does not require much.  Just let them know they are still cared for and not forgotten.

3.  I wake up everyday, take inventory of how I feel and decide if there is enough fuel in the tank to do something or go somewhere.

Most of the time there is not. The days I feel bad still outweigh the days I feel good.  Instead, I stay home and try to come up with creative ways (like blogging) to pass the time until a day comes that I can “do” something again- which is an excellent lead in to my next point.

4.  I often have to give myself a pep talk just to get out of the house.

Fatigue, pain, a burning brain and spinal cord are constantly present.  Somedays I have the capacity to tolerate this and can rally myself to go out for a few hours here and there.  These times are still in the minority though but I hope with continued treatment, leaving the house will one day be something I can do without much thought.

5.  You will likely not be able to tell if I’m having a “good day” or a “bad day” by a photo.

Oddly enough, some of my best pics were taken on the worst days.  This is most likely due to the fact that knowing I felt so ill, I made my hubby take 25 pics before I finally found one that I deemed “postable.”  If you saw the other 24, you probably could guess I wasn’t feeling well that day.

6  The road to recovery is actually quite bumpy.

There is no one-size fits all approach to treatment.  Some use IV antibiotics.  Others take oral antibiotics.  Still others, myself included, are using a combination of medications, supplements and herbal antimicrobials.  Nearly all of us will see several doctors over the course of our illness and try various treatment approaches until we hopefully find one that begins to get us on a healing path.  Even when we find a suitable treatment we must contend with recurring Herxheimer reactions, or Herx for short.  This is a sudden and exaggerated inflammatory response caused when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. An exacerbation of old symptoms, as well as a flare up of new symptoms, can occur.  The very treatments that aim to make us well can, for a period, make us feel much sicker.

7.  Bizarre symptoms pop up almost daily.

When my brain starts burning, that’s weird.  When my facial muscle starts twitching, that’s annoyingly strange.  When I awake in the morning to an ankle that feels like it was broken sometime during the night, that’s just bizarre.  The sudden and exaggerated inflammatory response that I spoke about in number 7, can cause a wide range of migrating and unpredictable symptoms.  Be glad I do not post those on Facebook.  You would not be able to keep up with them!

8.  Lyme Disease treatment is most likely not covered by insurance and patient’s are forced to pay out-of-pocket for some or all (in my case ALL) of my treatments.

Yes, you read that correctly.  I have paid out-of-pocket for every single doctor’s visit, lab test, medication, supplement, herb and Lyme treatment I have received for the last 4 years.  Sadly, my scenario is not uncommon as Lyme Disease places an enormous financial burden on those of us who have it.  This sum of money amounts to hundreds if not thousands of dollars per month depending on the treatment a patient may be undergoing.  43% of us are not able to work (myself included) due to the severity of our illness making the financial strain even more stressful.

9.  Despite me being ill, my husband is still as lucky to have me as I am to have him.

In the last few years, I have had several people make the comments to me, “You are lucky your husband stays with you.” or, “You are lucky to have him.”  Yes, those statements are true, however I am not less of a person because I am ill.  I still have the same heart, interests, sense of humor, etc.  We still spend hours supporting one another and making each other laugh to the point of tears.  My husband does not look at me and see a sick person.  He sees me and notices that my uniqueness has not disappeared.

Well, there you have it.  The inside scoop. An honest look at what living with Chronic Lyme Disease is truly like.  You will likely not see these topics appear on my Facebook page anytime soon, but know that my journey is far from over.  The very essence of having a chronic illness is that it is invariably, going to recur again and again.  Ingrained in me is the desire to persist so I will still continue to fight in the hopes of one day achieving a full recovery.  I look forward to celebrating many more healing milestones and experiencing life in full again with my friends and family.

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20 thoughts on “9 THINGS YOU WON’T SEE POSTED ON MY FACEBOOK PAGE ABOUT LYME DISEASE…UNTIL NOW

  1. Wonderful post, Jenny! There will be so many people who can relate with this experience. Your honesty will give others the courage to see illness from a different perspective & to better understand the unquie nature of their own healing journey.
    You are amazing! xx

    • Thank you Amelia for your consistent encouragement in my life. It is such a blessing to me. If I am able to raise even a slight amount of awareness, then I feel this post has been successful.

  2. Great post Jenny! I love it! You are so genuine and honest and it is refreshing. I always say, if someone thinks I am complaining or doesn’t like what I have to say….don’t read it and scroll on. 😉 Great job!

    • Thanks Rhiannon! I appreciate your support. I like what you have said, “scroll on.” Exactly. Sometimes real life shows up and it is not always pretty. XOXO

  3. This is such a great post! I can relate to everything you’ve written–even though I do not have Lyme, both my husband and son have been diagnosed with Lyme and your observations are so familiar. Thanks for writing this! Even though you tell it exactly like it is, it’s also very inspirational and hopeful!

  4. Jenny – I truly believe your transparency will help you deal with the “normal” of each day as well as help others. You write about this in a way I have never been able to (no Lymes disease but interstitial cystitis and a permanent neuorpzthy from Shingles). It makes me so angry that your insurance is not providing for you. My daughter had Guillian Barre Syndrome several years ago and I couldn’t believe the hoops she had to jump through to get help. It shouldn’t be so hard when you are sick especially for those like yourself who have contributed to society. Well I’m getting on my soapbox. Thank you for giving a voice to all of us who walk a road of chronic conditions. Thanking God for your 25% good days and praying for a decrease of the bad. Thanks for keeping it real. Your friend, Debbie

    • Debbie, I am always grateful for your continued support. I too have a soapbox of my own regarding insurance and it can be very frustrating. I appreciate the prayers as I will continue to need them throughout this long journey. XOXO, Jenny

  5. I shared your blog with a couple loved ones. Here is my #10:

    My car is 10 years old and has 29,000 miles on it, most of them pre-diagnosis. I suspect I’ve put maybe 500 miles each year on it for the past 4 or 5 years due to being housebound most of the time. At this rate, I’ll never need a new car again.

    • Oh my gosh Deb! Yes, that would definitely fit in to my list of things I don’t mention on my Facebook page, lol. Thanks for sharing and I wish you continued healing. Maybe this year will be the year for you to put 600 miles on the car. I can relate. I have only driven 3 times in 2 years. I got rid of my car altogether as it was of now use to me anymore.

  6. Thank you for sharing your journey Jenny. I too, am battling Late-Stage Lyme as were two of my three children. Thankfully, they are doing well following long-term treatment. My infection wasn’t diagnosed so soon. It took 26 Doctors nearly 12 years before I received the proper diagnosis and treatment. By the time I saw a Lyme-Literate MD, Lyme Disease had caused numerous neuro-degenerative diseases (MS, Parkinson, ALS, Alzheimer) as well as severe immune deficiency. I lost the ability to read, write, communicate, was nonfunctional and near death. My condition was so critical, the Doctor began treating me the very day I saw him as he felt it too risky to wait for test results. (Results were CDC positive for Lyme and multiple co-infections) The symptoms I endured, much like most Lyme Patients, were/are too numerous to list and more agonizing than words can say. July 1st, 2014 marks 5 years of treatment. My treatment has been aggressive, expensive, and life-saving. Thanks to long-term iv Rocephin, IVIG, in conjunction with Holistic, I am slowly but surely regaining my life. It’s been a long, twisting road, full of roadblocks and obstacles, and although not yet in Remission, all white matter lesions are gone, my cognitive is greatly improved, I have no more paralysis, and believe I will reach remission (hopefully) soon. Wishing you health and every happiness on your journey Jenny. Please keep us updated on your progress.

    • Thank you Nancy, for so eloquently sharing your story with me. You have been through unimaginable difficulties and you are emerging victorious. You are a true inspiration to me and proof that persistence, step by step and day by day, pays off. I will continue to press onward toward my goal of remission as well and yes, I will continue to post whatever victories I may have along the way. Thank you for reading my story and I too wish you continued healing!

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