Saturday, June 21, 2014

Quote It Saturday 6/21

Happy First Day of Summer/Summer Solstice! It's actually dark, cool, and wet here today, but we had enough hot and humid earlier this week.

Last night, we went to a high school graduation party for a set of twins. One of them has ME/CFS and was mostly housebound a couple of years ago and the other is healthy, so this was an especially happy occasion. I often say that one of the biggest things I've learned in my 12 years of having a chronic illness is that everyone is dealing with some sort of challenges. Like ME/CFS, they may not always be visible, but everyone has something difficult in their lives to overcome: illness or injury to self or a family member, death of someone close, disabilities visible and invisible, financial problems. That was once again proven true to me last night, as we sat around a table with the parents of the twins (whom are good friends) and a bunch of people we didn't know. The evening began with typical small talk, but someone asked how we knew the graduates, and we mentioned our ME/CFS connection. That led to questions about ME/CFS and about Lyme, which our son has, and then some startling discoveries.

These other people around the table - who seemed totally normal and healthy - began to share their stories, too. One woman has had fibromyalgia for 20 years and a few years ago went to Pittsburgh for a 3-day trip and ended up spending 3 months in a hospital there. They discovered a brain tumor while she was visiting, then she had s stroke during the surgery to remove it. Another guy mentioned (casually) that his daughter was on a ventilator and how excited they were that she could now get by only using it at night. As I often say, when you meet someone, you never know what challenges they are dealing with beneath the surface. I think that's a good reason to treat everyone you meet with compassion and respect, even (especially?) if they seem rude or impatient.

Anyway, there is a connection here to a book quote! I recently read Velva Jean Learns to Fly by Jennifer Niven, a historical novel about a woman who becomes a pilot to help with World War II. My book group all enjoyed the book, and you can read my full review here.

In this passgae, the main character, Velva Jean, muses on exactly this topic of the baggage we acquire through life, as she meets an old friend and wonders about what he's been through:
 “The more things that happened to me, the more I thought it was like carrying a suitcase – you kept adding things to it, like your mama dying and your daddy going away, heartbreak over your husband, heartbreak over a boy that died. You just started adding these things to your suitcase until the case got heavier. You still had to carry it around wherever you went, and even if you set it down for a while you still had to pick it up again because it belonged to you and so did everything inside it.”

          - Velva Jean Learns to Fly by Jennifer Niven
In another passage toward the end of the book, she compares flying a plane to being in charge of your own life:
"If there was one thing I'd learned, it was that you were responsible for your own ship. You had to look after the engine and make sure the plane was in order and ready to be flown. You were in charge of plotting your course. When you were in the pilot's seat, it was your hand on the throttle, no one else's. If your oil ran out or you lost an engine or the engine caught on fire and you had to crash, you were the one saving yourself. No one else could do it for you."

          - Velva Jean Learns to Fly by Jennifer Niven 
 That is exactly how I feel about living with a chronic illness and the approach I have taken with my own illness. If you want to feel better and make the most out of your life, you have be in charge of your own health and be your own advocate. You have to learn about your illness - and sometimes even teach your doctor about it! In the case of ME/CFS, this means being very patient and persistent in trying various treatments, sticking with them through trial and error to find just the right combination for you, and even keeping up with recent research. It's hard to do all of this when you feel so terrible, but it's the best way to take charge of your life...and save yourself, as Velva Jean says.

Well, I hope you are enjoying your weekend, wherever you are!  

6 comments:

  1. Anonymous8:40 AM

    Hi Sue, I have a lyme question. Do you think lyme is sexually transmitted and in a pregnacy can the child get it from me (im a man). Some studies says yes (about sexual transmission) but this studies are not so strong but Im a little bit concerned about this.

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    1. As you said, it is a controversial subject, so I really don't know any more than what you said on the subject of sexual transmission. I had Lyme for 3 years and my husband never got it. I do know of many parents who believe their kids got it in utero and were born with it.

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  2. Anonymous9:42 AM

    I also have another question and thats when you did your lyme treatment did you get candida. I think I may got it.. I got pain in my stomach and can only eat small portions. Is it possible to get rid of do you think?

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    1. I did well for my first 3 years of treatment on doxycycline and some herbal treatments. However, we ended up needing to add in some more powerful abx, and I did develop a yeast overgrowth at that point. My son has struggled with yeast overgrowth, too, during his treatment. Here's a summary of our experiences: http://livewithcfs.blogspot.com/2014/02/extreme-yeast-battles-timing-of.html

      Yes, it is definitely possible to get it under control. Restricted diet, antifungals, and herbal antifungals all help.

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  3. Anonymous11:30 AM

    Ok thanks for the answer and his back on the antibiotics?

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    Replies
    1. No, actually. Since he has had so many problems with long-term abx (not just yeast but also mitochondria and methylation issues), we have decided to try him on Byron White's herbal protocol. He started A-bart recently - we are going very slowly and gradually.

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