Liebster Award Nomination

leibster-award-badgeI’m proud to announce The Zebra Pit has been nominated for a Liebster Award! Many thanks to Carole Scrafton at FibroFlutters for the nomination! Unfortunately, it’s taken me a bit longer to compile all of the information I needed to accept the award and nominate others, but that in no way diminishes the excitement and honor we feel about being nominated. We will proudly display the Liebster Award banner on our about page.  There are a few simple rules to follow when receiving a Liebster Award, so I’ll try to cover everything here.

Here are the rules:

  • Acknowledge the blog who nominated you
  • Answer the 11 questions your nominator asked
  • Nominate 11 other bloggers
  • Ask them 11 questions
  • Let them know you have nominated them

11 Questioned Answered:

  1. What country do you currently live in and is it where you were born? I was born and reside in the US. I was born and raised in greater Cincinnati, and though I’ve lived in a number of other cities in the US, I returned to the area around 15 years ago for grad school and decided to stay.
  2. How long have you been writing/blogging? I’ve been writing most of my life and started my first blog all the way back in 1996. I’ve had many blogs since on a variety of topics, including literature, sexuality, cooking, and health and wellness.
  3. What is the subject matter of your blog? My blog focuses on health, wellness and nutrition for spoonies.
  4. How often do you post? As often as I can without compromising my own health.
  5. Do you just blog about your own health, or do you share other stories by other bloggers? I tend to choose topics that are in line with my own health concerns, but do share things from other bloggers that I find helpful or resonate with me.
  6. What are your main interests when you think about research? Research which helps to shed light on the root causes of my conditions and of course research on effective therapies.
  7. If you could help with research, would you? what would you like to do? Yes and no. I’m currently taking part in a research study for medication overuse and how it relates to migraines and I’m all for taking part in studies that might help my illness be better understood. I am not willing to test out new drugs, however. I have a hard enough time trusting those already approved by the FDA.
  8. When blogging do you share up to date research news relevant to your health conditions, or interests if not writing in connection to chronic illness & ilk? All the time. If I don’t share them directly on my blog, I share them with followers on my facebook or twitter feeds.
  9. What are your favourite distractions / hobbies? Television seems to be my favorite distraction of late, though I’m trying to change that and spend a little more time on other things. I really love to read, but mostly have to listen to audiobooks because too much reading brings on migraines. I also love to paint and write, but can only do those sparingly, as well. If I had the energy, I’d definitely be hitting the hiking trails on a regular basis.
  10. If you could select one health problem from your list of health conditions to delete permanently what would it be? Easy. Ehlers-Danlos Syndrome (EDS).
  11. How do you perceive that your life would improve once you’d deleted your chosen health problem? I chose EDS because as I understand it, faulty collagen is the root of all of my problems. It would mean I would never have developed debilitating POTS or migraines. I wouldn’t have a Mast Cell condition or gastroparesis or a deteriorating spine or chronic fatigue or fibromyalgia or… you get the picture.

The Bloggers I have nominated:

  1. EDS – Everyday Successes by Tori https://edseverydaysuccesses.com/
  2. Tips for ME by Jenny https://tipsforme.wordpress.com/
  3. The EDS Chronicles by Squidgeaboo https://theedschronicles.com/
  4. Bend, Don’t Break, by Aubrey https://benddontbreak.blog/
  5. The Fault in My Collagen by Kristen Paz https://thefaultinmycollagen.wordpress.com/
  6. My Life with Ehlers Danlos by Emme Hill https://livingwithedsblog.wordpress.com/
  7. Dazzling Zebra by Amy https://dazzlingzebra.wordpress.com/
  8. Growing Up and Liking It by Lemons https://growingupandlikingit.com/
  9. Life with Ehlers-Danlos Syndrome Type 3 by Sarah https://livingwithedsuk.wordpress.com/
  10. Sydney is Kinda Sick by Sydney https://sydneyiskindasick.wordpress.com/
  11. Behind the Scenes – Life as a Spoonie by Karin https://lifeasaspoonie.wordpress.com/

The 11 questions I would like to ask my nominees:

  1. What inspired you to start blogging?
  2. What are your favorite subjects to write about?
  3. Do you have any other blogs?
  4. What do you miss the most that you’ve lost to chronic illness?
  5. What’s one of the most valuable life lessons chronic illness has taught you?
  6. If you could offer only one piece of advice to someone with your primary condition, what would it be?
  7. If you could raise a million dollars for any cause, which cause would you choose?
  8. What change/medication/therapy do you feel has been most beneficial to your health?
  9. If you were granted one week without any interference from your condition (being magically and completely fit and healthy), what would you do with it?
  10. What are your favorite hobbies or ways to spend your free time now?
  11. Who or what helps to motivate and inspire you?

Now it is up to me to contact the bloggers I have nominated and if they choose, they can accept and nominate their own 11 bloggers for the Liebster Award. I had a lot of fun choosing blogs and got to know a few new sites in the process! Thanks again for the nomination, Carol!

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Are Vaccines Safe for My Condition?

“Is it safe to get x vaccine if I have y disorder?” I hear this question asked all the time in support groups, on twitter and blog posts by spoonies. There are a lot of questions and confusion these days around the safety of vaccinations for children, elders and people with chronic illness or auto-immune disease. How do we determine what’s safe when our own doctors insist they’re safe yet courts are ruling that contaminants in vaccines are in fact triggering latent genes for conditions such as autism, 1, 2, 3 based on studies which confirm that vaccination causes mercury toxicity which can irreparably harm our mitochondria?

I don’t want to come across as sounding anti-vaxx. Vaccinations can be an incredibly good thing. They were responsible for eradicating Polio, after all and are meant to protect us from some pretty scary stuff. We need vaccines.

But not everything about vaccines is good. What bothers me is what comes along with the vaccine. They tend to be packed with things that aren’t good for the average person, but when it comes to the spoonie population can be downright disastrous. Vaccinations contain highly toxic metals and substances such as mercury, aluminum, lead, cadmium, formaldehyde, and thimerasol and often contain common allergens such as dairy and MSG, 4. I could break down what each of these does to a body, but let’s just say that most of these compounds do not simply process through the body without harm. They are toxic to our systems and can do any number of things to our bodies, including contribute to serious conditions such as Alzheimer’s disease.

I had a TDap vaccine several years ago that resulted in a high fever, chills, vomiting, swelling and heat at the site of the injection, all over soreness in my arm and a rash. Recently another member of my local zebra chapter reported the same symptoms with a different vaccine, only her arm was so severely affected that she couldn’t move it for several days. It took both of us weeks before we felt back to our normal selves.

Conversely, I’ve taken flu vaccines since with none of these side effects. Why? More than likely, the vaccines had different components, so I experienced a different reaction. But I’m wary of vaccines now and I’m certainly not the only one. I’ve done a lot of research since and I believe that the use of heavy metals and common allergens like dairy have to be removed from vaccines in order to make them safe for all of us.

This article discusses the history of vaccination problems among immune compromised persons and while it seems to contradict itself at every turn, it seems clear there is an issue. One which is complex, multifaceted and ongoing.

Of course this is a topic of hot debate. It’s especially important when governments and schools are making laws that force people to vaccinate their children for the “common good, 1.” I could not in good conscience vaccinate my child if it meant also giving them the mercury toxicity that could have led to my stepson’s autism. Luckily, if you want to call it luck, I won’t be having to make that choice.

I do have to face that choice for myself, though and will have to more and more as doctors push on me various vaccines recommended for aging and ailing populations. In order to get ready for those choices, I try to educate myself with the facts as much as possible and pressure manufacturers and law makers to force positive change to these much needed vaccines.

To that end, I’ve signed up to watch a documentary series on The Truth About Vaccines, beginning August 17th. I encourage you all to watch as well so you too can make the best, most well-informed decisions you can to stay as healthy as possible for as long as you may!

 

 

Community & Balance

Community support can be a wonderful thing,  until you start letting it stress you out, use up all of your precious cognitive resources, and practice avoidance by allowing helping others to distract you just a little too much from your own life.  
Now I’m so fatigued I’m having difficulty thinking clearly, my pain levels are through the roof, what I now think is gastroparesis and definitely not IBS has begun its full assault and I still have to deal with the fact that I have probably been misdiagnosed, or have another comorbid dx with a not so very cheery outcome. 

I have more tests Tuesday, but hope to be recovered enough to face the music and share all soon, though I do have to say all these changes still have me questioning the return on investment of this blog. I’m not sure it’s worth it to me or anyone else right now to continue. 

Reflections on Loss in the Community

funeral-flowers

There have been an alarming number of deaths in the ME/CFS Community recently (see Losses in the Community for more information). I don’t personally know any of these people, but every time I hear of another death, I take a moment to reflect on the senseless loss it represents and the pain and anguish it causes us all, to say nothing of the pain and suffering to that person’s loved ones who have probably struggled and hoped for years to find a cure, or at the very least, some relief for their ailing loved one.

And of course it’s not the ME/CFS community alone that sees these dramatic losses to it’s numbers. Every week someone announces the death of a member in one of my EDS or pain support groups or someone posts a suicide note and is never heard from again. If it’s not the illness itself shrinking our numbers, it’s the utter desperation of going years without proper treatments and care, sometimes without the assistance and support of loved ones.

I can’t help but reply to such posts, whether I know the person or not, whether or not there are already 100 other comments. I know I’m supposed to be an old hand at this. I should be strong, but I can’t help but cry every time as I type out pleading lines of carefully thought out text that I’m sure gets lost among dozens of other replies. It changes me for days after, as I dwell on the devastating emptiness, the hopelessness, the strange sense it begins to make when you’ve gotten to the point of a fully formed plan.

I begin to  worry about the friends and allies I’ve come to love and depend on for emotional and moral support and how much it would hurt if they were next, be it suicide or illness related. It’s almost enough to make me want to shut off my cell phone, crawl back into my bed and never approach the Internet again. Almost.

It’s tempting to insulate myself from all this loss, all this death which only reminds me of the fragility and brevity of my own life, reminds me of the many times I have planned for my own demise and risks putting me back on that terrifying island of loneliness.

But that’s just it. Without the few real, compatible, loving friends I have managed to cobble together from the support groups I frequent and my blog interactions, there is little chance I would have survived this long. Every last friend I have is a chronically ill disabled person I met on the internet. All of my other ‘friends’ and my entire family got tired of waiting for me to get better a long time ago and moved on with their lives. My chronically ill crew are my entire support system outside of my husband and I’m not ashamed to say I need them desperately.

We need each other. Whether you are almost completely alone like myself or you have a family full of Florence Nightingale’s, you more than likely do, too. Nobody truly understands what it is to go through a thing until they have. We need commiseration, camaraderie. We need to be able to speak with someone who already knows our language and feels the same rhythms we do. Will we always have the same experiences, symptoms, motivations or goals? Will we always be compatible? Of course not. But we all have common ground from which to begin, that of being relegated to a marginalized, largely misunderstood and mistreated group within society all based on something we have no control over.

That’s why we have to fight for one another, support each other, reach out to each other, lend the support we have to give. My body may be basically worthless and I wouldn’t count on me to remember much, but I know how to listen, offer comfort, provide resources and do research, distract with jokes and stories, so those are some of the things I set out to do.

Still, I feel like I can do more. So I want to make it known right now I’m pretty much always available (unless my symptoms have utterly skyrocketed) and willing to talk to anyone, whether you know me or not. PM me on the FB page, fill out the contact form, or DM me on Twitter and just say “Hey, Cap. I could really use a friend today,” or “could you help me connect with some people who also have _____,” and I’m your woman, within reason of course 🙂 but rest assured, I won’t judge. I’ve been there too many times before myself.

fb_img_1469469867456.jpgIf nothing else, know that I have had a complete plan, down to who, what, when, where and how. If I had gone through with it when I wanted to, I never would have seen the day I managed to drag myself out of bed again and decided that this life is indeed worth living again, despite how very difficult each day still is. I truly believe that every day that I live is another day that I have won against this disease, as it gives me yet one more day to get a step closer to finding a satisfactory level of recovery.