Hard Truths

June 16, 2015

Hard Truths

June 16, 2015
Posted in: Lyme Disease | Reading Time: 5 minutes
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Morning Fog in Santa Cruz Mountains 113/365

This month I marks two years since the beginning of my treatment for Lyme disease. I'm astonished how much the body can take. I just finished a six-week course of IV Daptomycin (Cubicin), a new drug being used for Lyme disease following a successful study done on drugs that help eradicate it completely. Words can't explain how thrashed I was during and even after the Cubicin treatment. My body could barely keep up with getting rid of the dead bacteria, despite the multiple things I did and still do to keep detoxing every single day. For me, Cubicin made IV Rocephin feel like child's play.

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Two years ago, when I began treatment, I had a very positive outlook about recovering, that the road would be long and hard at times but I was 100% convinced of full recovery.  Even through my blood clot fiasco in March and April, I kept a positive outlook. These six weeks really tried my belief in that. The disease beats you down so much, you don't care--you can't care-- about anything. In a way I'm glad I committed to a 365 photo project because it forces me to care about something, anything, every day. But the thought crosses my mind a lot more now: "What if I never recover?" Despite the success stories I read of Lymies who recover, there are many more who don't recover and live out their lives in constant pain. Full recovery isn't a guarantee. It's a hard truth.

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California Poppy 114/365

Every week I read about someone who's died of Lyme disease. A 17-year-old kid who had symptoms that were overlooked as a flu despite knowing he was a camper in an endemic area. He died shortly after being told to stay at home and rest, from Lyme carditis. Another was a wife and mother, who was misdiagnosed for nine years with Rheumatoid Arthritis. When she finally received a Lyme diagnosis, she fought hard and well, but lost.  Her husband wrote her final blog post.  Her death certificate listed Lyme disease as one of the causes. Believe it or not, that's a huge forward step in the progress of getting recognition for the disease from medical community. Another was a young man, around my age, "Six-Way Lymie" whom I followed on  Facebook. He had a multitude of health issues related to Lyme, the biggest being a 6-way heart bypass due to Lyme inflammation in his heart causing blockage. He died a few weeks ago. Lyme disease is fatal.  And it's a hard truth.

I don't understand how the CDC can continue to dig its heels in claiming that Chronic Lyme disease doesn't exist when there are mountains of studies that show a month of doxycycline does not eradicate the disease. There are also mountains of studies showing the complexity of the bacteria and why it's so difficult to eradicate.  I don't understand how 300,000 people who live in pain, their lives ruined, can go ignored and shunned. They can't get help, either because they can't find a doctor close to them willing to treat them with whatever it takes to recover, or that they can't financially afford it because it's not covered by insurance. What our government continues to do to Lyme disease victims pales in comparison what it did to AIDS victims. It's criminal. It's injustice. It's a hard truth.

Every news story on Lyme, whether it supports or denies Chronic Lyme disease, provokes outright wars between the two sides in the commentary. As a victim it's hard to hold back my opinion, but its impossible to fight with people who have no experience with it. People who have heated opinions with no facts and no experience can sway public opinion. It's a hard truth.

Of all the things a Lymie has to face, being abandoned by friends has been the most difficult. Since I began treatment and have been open about my illness, readership of this silly blog has dropped dramatically. I suppose if I'm not constantly funny or entertaining as I once was, my blog pals aren't interested. It's a hard truth.  I can't blame people for not wanting to read about illness. It just makes me cherish the few friends who've chosen to remain part of my life, both in person and in cyberspace.

I suppose if I had diabetes, colitis or some other widely accepted chronic illness, I wouldn't write about it and I'd continue to write humor. I write about Lyme because it is truly like no other disease. It is systemic, infecting every organ, every joint, every nerve, every brain cell, every millimeter of your body and your life. It's a disease that's truly not understood unless you experience it. And it's a disease that is so politically charged that it needs as many voices from real life experience as it can get.

But imagine, having a systemic and life debilitating illness that the medical community has no intention of helping you with.  Now imagine seeing a drop in friendships and community.  No other disease does this. Somebody gets cancer? There's community outreach, fundraisers and casseroles. But when someone suffers from Chronic Lyme disease, if she's lucky she'll get a blithe comment like, "Keep your chin up."  There's nothing more truthful than writing or talking about a difficult life experience and discovering what your friends are made of.  Friendship abandonment is a universal experience among all Lymies. It's a hard truth.

If you'd like to really help the Lyme community over come some of these hard truths, please consider a tax deductible donation to ILADS, a community of doctors and researchers dedicated, for decades now, to advancing the standard of care for Lyme and associated tick diseases.

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6 comments on “Hard Truths”

  1. Julie - I can only try to imagine what you're going through. I get mad when I think about how long it took for you to get diagnosed and treated. And I get even madder when I think about insurance companies. And all of this on top of the horrific physical, emotional, and mental effects of the disease. You're an excellent writer and this is your everyday reality right now, so I say blog away and educate people. I do enjoy your photos when you're up for taking and posting them. I'm down the hill now at least four days a week teaching summer school, so let me know if I can pick anything up. I can always stop by just to say HI also, in case you want company. 🙂

  2. Losing friends during illness or is not unique to Lyme sufferers. Some friends can give ongoing support, but most, as the illness (or disability) drags on, will jump ship. They don't want to be 'brought down', but also simply don't know what to say anymore. That's when you acquire new friends - 'caretaker types' or 'been-in- (or am in) your-shoes types'.

    I will never forgot those (mostly family) who stood by during my darkest hours; and I am there for them in kind.

  3. I have to agree wholeheartedly with everything written above by Kim and Gina. If I lived near you, I would stop by and give you a big hug and share some tea and time with you. Words here can never express what my heart speaks for you. Just know that you do have friends out here, even if they are silent, they have you in their hearts and prayers.

    Hugs, Kathie

  4. I had a friend who was housebound during cancer treatments. I was her "monthly chemo buddy" and her "Wednesday for a few hours after work" friend. She had others visiting at different times as well. It gave her human contact, a reason to 'get dressed' that day, and believe it or not, much fun and laughter. It gave me a clearly defined way to help, but also the ability to "shelve her pain and suffering" (a necessary harsh reality) when I wasn't with her, knowing I would be back to help the following week. Had I not had these scheduled visits, it would have been easy to drift out of her life, feeling awkward and uncertain of what was my role.

    Perhaps you should do something you may not be accustomed to (don't ask me why, but I sense you are a self-sufficient type) and ask friends for regular scheduled get-togethers. Whether it be a weekly phone call, a monthly visit, or joining you for a doctor visit (whether you want assistance or just for the company). Most people like specific plans, so be clear what you want. Start taking people, like Gina above, up on their offers and get a calendar started of who and when. Yes, there will be days you can only lay on the couch and chat for a short time, but it will still lift your spirits.

    Your friend OP Pack is right, you have 'silent friends' out there who would love direction from you on how to help.

  5. Julie, you are one of the bravest people I know. I'd love to hang out and take a short hike over nit-wit 2. I have friends who I schedule monthly time with - my friend who I go to the dog beach with is just 1. Since you're in Santa Cruz and I'm in L. A., just know that you're in my thoughts almost daily and I'm sending you some extra rottie strength on this Wednesday morning.

    -Lisa

  6. I'm so sorry people have bailed on you during one of the hardest things you've ever been through. I know we've never met, but I'm still here for you. I've been too busy to read regularly, but I always come back to catch up. It's so sad how Lymies are treated and I'm very glad you're sharing all of this with the world. It does help. I've learned so much from your blog! Thank you!

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