Health Update

Life Giving Lemons…..

“When life gives you a surplus of IV poles, make a coat stand.”

IV pole coat rack

I can only take credit for the quote; the idea itself was my husband’s. What an immensely inspirational quote though, right? It may even be worthy of juxtaposition over an image of a little girl running in a field of wild flowers, destined to inspire Facebook users around the world. 😀

As you can see, I am alive and my sense of humor is in tact. Not much is new: My health is still less impressive. My life is still happy. October is Dysautonomia Awareness Month.

Stress is high, and I may not have my health, but I have my family. They are how I am able to keep my cheerful disposition, even as life keeps adding extra duties but no extra energy. I feel overwhelmed at times, especially when an unforeseen issue requiring immediate attention pops up, however I am managing as well as I can. Each week, I ensure some energy goes to things I want to do, like spending time with family. I got to see my adoptive grandma and great uncle today, which was AMAZING. When my health is at a low point, it is easy to feel as though I must devote every minute I am semi-functional to duties. Fortunately, I know that line of thought is unhealthy. As they say, all work and no play makes Jackie a dull girl. 😛

In the spirit of spending time doing things I want to do, I am setting a goal to update my blog more often. Does anyone out there have tips? What helps you write and edit posts when life is busy or you don’t feel well?

10 thoughts on “Life Giving Lemons…..

  1. I don’t know if it works for blogs but I use CinchShare for direct sales facebook parties I run. I’m an Independent Consultant with Usborne Books & More- selling high quality and engaging children’s non-fiction, fiction, and activity books. I’ve been sick for 2.5 years and recently joined this July. Great outlet and energy focus other than as you know, everything related to health or lack there of. 😉
    Anyway, I just did a party tonight via facebook and CinchShare. I prepped the party when I felt well and scheduled the posts for the correct time slots. Sure enough, tonight during the party, I didn’t feel the so hot but all I had to do was comment here and there. Soooo niiice! 🙂 Maybe that would work for blogging too. Build up posts on your good days and schedule them out.
    P.S. I try to read all of your posts during your journey to wellness. Whatever you do keep it up. Good to know people out there who don’t give up or give in but continue to search for better health.
    P.S.S. Acupuncture has done wonders for me. I went from not being able to handle standing for more than 2 minutes to being able to stand/walk for 10 to 15 minutes at a time. Now I’m doing acupuncture at from NAET practitioner. Just started those treatments so we will see how it goes.

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  2. One thing that has helped me with my blog is the “Wordless Wednesday”. I used to do “Photo of the Day”, just a way to stay connected here and show that I’m more than brain tumors and cancer syndromes.

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  3. And I have to mention as sick as she’s been Jackie has her gazillion shower/wedding thank you notes written with lengthy and personal notes in each one. So she has been writing, just not the blog 🙂

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  4. Jackie, I love the coat stand idea. I should print it out and take it into the hospital when I’m there next. I had similar thoughts about photographing the walking frame I was using when I was first diagnosed. I thought of photographing one on a rugged mountain or something. I was a bit cheeky.
    In terms of what to post when you’re busy or don’t have energy, I’d get some photos going. Photograph some places in your home town and write a quick blurb. You could also post motivational quotes. They’re pretty popular. You can also reblog from other blogs. JUst a few ideas.
    I am doing ok. Had a calcium infusion this week as years of prednisone use is affecting my bones and I have signs of osteopenia. I’ve also had a bad lung infection and it’s still hovering around. Came very close to a hospital admission. I’m relieved but wondering whether it’s going to flare up again and feeling stressed.
    I sometimes think about what it would be like to go back before all this started. I think I’m actually happier now. I am moreconscious of the good things, while knowing about the bad. Not a perfect relationship but I get a few punches in xx Rowena

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  5. I’ve dealt with my fair share of illness and injury, but, while I’m sorry to hear that you have so many challenges in your day-to-day life, I’m impressed by your great attitude. While I don’t have the time to blog as frequently as I’d like – screw it, what I want is a book deal so you people can pay to read my musings! – i keep track of any blog ideas by immediately jotting them down. Sometimes, it might just be a funny thought, a snippet of conversation or an issue I feel strongly about, but I’ll type it into my phone, along with the tagline “Blog Idea.” When the well runs dry on a day I want to be blog productive, I immediately visit my list. Hope this helps and stay positive and strong. 🙂

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  6. I was just recently diagnosed with pots and gastroparisis, and I have to tell you reading your blog actually inspires hope that I will have happy days ahead. I just turned 27. Tell me, do you find that some times are better than others? Has this illness fluctuated for you? I’m still learning. Thank you for the uplifting posts and I hope brighter days are ahead for you and me both!

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    1. Yes! It very much fluctuates. If you look up information on stress and the autonomic nervous system, or sleep and the autonomic nervous system, it makes sense the severity of an autonomic disease would vary day to day.

      One idea to get a handle on things is to keep a diary to aid in identifying correlations with symptoms. Example of things to track would be sleep/sleep times, diet, volume of food eaten (big vs small meals), fluid intake, drinking with meals or not, medications/supplements taken and their timing, stress levels (note any major brief stressors — like maybe it was a good day but for 20 minutes you were really upset), physical activity, if you did something enjoyable, if you left the house how often you rested, timing of rests, etc. and compare it all to symptoms. I think it is a good idea to note both subjective symptoms (fatigue, cognitive difficulties, presyncope, mood, discomfort) and objective symptoms. Objective symptom measures would be how many times you threw up and/or passed out, blood pressure, heart rate, temperature, calorie intake.

      It can be overwhelming, so maybe pick one or two things to track at first. 🙂

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