Sharing Sunday Link Up #35

Welcome to Sharing Sunday Link Up #35.

It has been an interesting week here at the Zippy, to say the least.  Not one, single, boring day here but that seems to be the life of those with multiple chronic illnesses.  We began the week with a blow transformer in our front yard on Saturday and a good size grill fire on Sunday.  Then little #1 developed a nasty virus, and I developed a migraine from lack of sleep, trying to make sure she could breathe.  Toss in our babysitting charges and the usual EDS fun and I am ready to start a NEW week for sure.  How about you?

How was your week?  What exciting things happened in your life that you could share?  What is something positive?  We managed to spend the day rummaging and thrifting for a much needed stroller and homecoming dress despite the ongoing headache and back pain, AND we found both in great condition and within our price range so WIN! WIN! here.  What can you celebrate?

Sharing Sunday Link Up #35

“Sharing Sunday” Link-up is available EVERY Sunday for blogs featuring articles that will help those with a chronic illness.

This linkup is not only for the chronically ill, but for everyone that has a personal story that offers help (allergen-free recipes and ideas), adaptation ideas, testimonials or anything that would be helpful or encouraging to others, (even sharing a day in your life).

The idea of the “Sharing Sunday” link-up is to spread the word about our illnesses, adaptations, short-cuts, tools, articles, stories, recipes, income earning ideas, etc… and to support each other during this sometimes, lonely journey.

Bloggers struggling with pain and challenges can visit other sites, while non-bloggers can find others like them and follow along in addition to finding recipes, tips and adaptations that may help.

I LOVE fun, crafty, anything goes linkups, but the “Sharing Sunday” Link-up is not one of those.  If you want to share something fun and crafty check out our Sharing Saturday Link Up at Treasured Tidbits.

We will have a few guidelines to keep the links useful and uplifting to our readers.

Bloggers before linking up please follow our guidelines found here.

Follow us on Pinterest, Twitter, Facebook and sign up to receive emails.

We will not share your email address or spam you with junk, promise!  We will share each post in the email and share additional links, updates and fun stuff on Facebook.

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Dr.E.R. Staff

Dear E.R. staff,

Thank you!

Thank you for responding quickly to our presence in the E.R.

Thank you for taking the time to listen to the list of concerns and reasons we were there for.

Thank you for showing concern when my daughter came in with an elevated heart rate but allowing me to explain the suspected cause and not jumping to conclusions.

Thank you for knowing what POTS and Dysautonomia means from the intake personnel to the doctors on staff.

Thank you for having a working knowledge of EDS, Reynaud’s, Chiari, CCI, Mast Cell and the huge list of other comorbids we discussed.

Thank you for conducting a thorough exam and not jumping to conclusions or disregarding our concerns without taking the time to discuss the reasons.

Thank you for taking our sloppy medical binder and reviewing it completely then sharing it with your supervisor and reviewing it again when we were still stumped.

Thank you for spending repeated time on the phone trying to get information from our regular neurologist’s hospital even though she was on vacation.

Thank you for stopping me while I was outside my daughter’s room to discuss further medical concerns and not alarm or upset her.

Thank you for being as thorough as possible based on the information and symptoms my daughter presented with.

Thank you for listening as we discussed my daughter’s inability to receive IV Benadryl and offering an alternative.

Thank you for listening when we mentioned that she needed the IV site and IV warmed and on an extremely low delivery rate to prevent other complications.

Thank you for returning in an timely manner (after a reasonable amount of observation and testing) to let us know that you were sorry but you could not do anything more to help my daughter in the E.R.

Thank you for being willing to discuss concerns we had with leaving and not having a doctor or neuro on call.  (All of ours were on vacation).

Thank you for discussing our follow-up options, possible causes with patience as we tried to cover all our bases before leaving.

Simply said:  THANK YOU for providing quality care, a clean facility and a caring, amazing staff.  We entered your facility with justified concerns that had previously been ignored at another E.R. and we were treated with the utmost care and respect despite the unusual way my daughter’s issues present and the challenges she offers to even the most basic care.  Thank you for taking all of it into consideration and please continue to deliver such high quality care and service.

Sincerely,

A Concerned Mom

Note:  Because I have something positive say about this hospital I want to be sure they receive the credit they deserve.  I want to name them.  St.  John’s Emergency Room in Springfield.  I realize everyone’s experience may be different but overall our treatment at St. John’s has always been excellent both in the ER and at specialty appointments.  The doctor’s work well together, communicate and respond to one another within a timely manner.

To read the recent BAD experience we had at another ER read the “Dear E.R. Doc” letter I wrote here.

Sharing Sunday Link Up #25

Happy Sunday and welcome to Sharing Sunday Link Up #25!

I am happy to announce The Zippy Zebra was able to collect $5.39 in this month’s Change for EDS campaign and will be sending the check out this week!!!  How is your Change for EDS coming?  Not sure what I am talking about?  Click here for details.  Not sure how $5.39 is going to make a difference?  Let’s take a look:  If all 300+ Zippy Zebra followers donated their change to EDS each month and it was on average $5.00 that would equal $1500+/month and one year would be $18,000 to EDS research.  Imagine what that could do?

Life here at the Zippy has been full of surprises (like it always seems be with 4 zebras and their comorbids) but nothing we can’t handle so far.  How has your week been?  Have you enjoyed your summer?  Avoided the heat or embraced the season?  Personally we stayed cocooned inside or only venture into the shade due to heat and sun intolerances.

BUT enough about us we want to hear about you.

Plans for 2017 and remaining 2016:

This month we would love for each of you to leave a comment below, send an email or comment on our Facebook page with the things you would like to see from The Zippy in 2017.  More personal stories, more tips, more of a peek into our daily lives, more articles and websites, etc…?  If you would like more tips, would you like daily photos with quick overlay ideas or lists such as “5 Ways to Fight the Heat”, “10 Tricks to Help You Garden”,  “25 Things to Make Being a New Mom with a Chronic Illness Easier?”  We WANT to hear from you and not just share whatever pops into our little heads.

We are also looking for the following:

Contributors to share an article a month, week, etc…  I cannot offer any kind of reimbursement but credit will be given and you will be helping encourage someone else (without the hassle of running a blog).  These can be short stories, feelings, etc… just a contribution from another source.  I imagine y’all get tired of hearing from me.

Personal Real Life Stories:
We would like to feature one EDS story per week in 2017.  That is 52 stories to spread awareness and help others.  With over 300 devoted readers I know we can manage 52 stories, even if you have already submitted a story you can continue to tell the developments or some short stories.  All contributors by October 31st, 2016 will be entered in the drawing for a FREE T-shirt and magnet.

We would also like to feature one Marfan Story per week/month.  (Marfan Monday.)   Once again we would need 12-52 stories and I would need them by the end of the year.  Stories submitted by October 31st, 2016 will also be entered to win a Marfan T-shirt.

As the year progresses I will be asking for additional stories for various awareness months:  Autism, Cancer, Fibro, Lupus, Chiari, POTS, CCI, etc...  These will also be entered into a drawing with the gift to be announced.

We are planning an explosive year for spreading awareness in 2017 BUT we NEED your help to do it!!!!

Many of you have offered your story, or to share a life event but have been unable to submit them due to complications.  If you can do it NOW is the time.  We want to hear from Y.O.U.!!!

For details on submissions click here.

Sharing Sunday Link Up #25

“Sharing Sunday” Link-up is available EVERY Sunday for blogs featuring articles that will help those with a chronic illness.

This linkup is not only for the chronically ill but for everyone that has a personal story, that offers help (allergen-free recipes and ideas), adaptation ideas, testimonials or anything that would be helpful or encouraging to others, (even sharing a day in your life).

The idea of the “Get The Word Out” link-up is to spread the word about our illnesses, adaptations, short-cuts, tools, articles, stories, recipes, income earning ideas, etc… and to support each other during this sometimes, lonely journey.

Bloggers struggling with pain and challenges can visit other sites, while non-bloggers can find others like them and follow along in addition to finding recipes, tips and adaptations that may help.

I LOVE fun, crafty, anything goes linkups but the “Sharing Sunday” Link-up is not one of those.  If you want to share something fun and crafty check out our Sharing Saturday Link Up at Treasured Tidbits.

We will have a few guidelines to keep the links useful and uplifting to our readers.

Bloggers before linking up please follow our guidelines found here.

Sharing Sunday Link #24

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Sharing Sunday Link Up #24

“Sharing Sunday” Link-up is available EVERY Sunday for blogs featuring articles that will help those with a chronic illness.

This linkup is not only for the chronically ill but for everyone that has a personal story, that offers help (allergen-free recipes and ideas), adaptation ideas, testimonials or anything that would be helpful or encouraging to others, (even sharing a day in your life).

The idea of the “Get The Word Out” link-up is to spread the word about our illnesses, adaptations, short-cuts, tools, articles, stories, recipes, income earning ideas, etc… and to support each other during this sometimes, lonely journey.

Bloggers struggling with pain and challenges can visit other sites, while non-bloggers can find others like them and follow along in addition to finding recipes, tips and adaptations that may help.

I LOVE fun, crafty, anything goes linkups but the “Sharing Sunday” Link-up is not one of those.

We will have a few guidelines to keep the links useful and uplifting to our readers.

Bloggers before linking up please follow our guidelines found here.

Sharing Sunday Link #24

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Sharing Sunday #19- A Chronic Illness Link Up

During the month of May we have been sharing  E.D.S. Stories in our “Real Life Stories” Series.   I am thrilled to say that we were able to share 13 personal stories with social media.

We would love to have you share YOUR story as well.   Details on how and what we are looking for are found on our submissions page. 

Our goal is to continue sharing at least one E.D.S. story a month to spread awareness and demonstate how it truly affects each and every one of us.

We are also wrapping up our online fundraiser on May 31st.  25-30% of all sales will be donated to fund EDS Research.   You may click here to learn more.

“Sharing Sunday” Link-up is available EVERY Sunday for blogs featuring articles that will help those with a chronic illness.

Read more »

I Just Want To Be Well For My Son-A Mother’s Story

I just want to be well for my son. A Mother’s Story

I don’t even know what healthy is!

But my son needs a strong and healthy mom.

I’m a 27 year old disabled mom with a rare syndrome called Ehlers Danlos Syndrome type 3- Hypermobility.  It’s a multi-systemic disorder, meaning it effects, in severe cases like mine, almost every single body system.  It’s caused by a defect(s) in connective tissue.  Collagen is mainly effected, which the body contains about 85% of!

I remember the pain started around the age of 7.  It was nerve pain from carpal tunnel and tarsal tunnel syndrome which was the worst!  I was told I was being a baby about it and that it was just growing pains (I am quite short, only 4″11.5″.”)  It was joint pain daily as well, with some muscle pain.

I also had panic attacks from all the pain, it was so overwhelming, I couldn’t sleep and got gastrointestinal migraines.

Read more »

A 26 Year Old Spoonie Shares Her Story (Part 3)

My primary doctor has referred me to a rheumatologist, who I will see in June, because my last blood test revealed a positive ANA panel. This means I likely have an autoimmune disorder, on top of everything else.

I am scared to go see this specialist, as my last rheumatologist I saw outright told me I was crazy (!), was too young to have so many problems, and that I was obviously making it all up, I was being dramatic, and it was all in my head.

It’s a tale too many chronically ill patients hear.

I’m not being dramatic; I’m being honest.

I wouldn’t be paying a medical professional to help me if I wasn’t at breaking point!

Read more »

A 26 Year Old Spoonie Shares Her Story (Part 2)

To view the beginning of this Spoonie story click here.

20 years of failed allergy injections are also now behind me; new allergies were diagnosed, but I was able to stop my injections.

I actually feel better OFF the injections than I did when I had them.

Go figure! Despite increased medical costs in this state, moving to Florida was the best decision I have ever made.

As far as my diagnoses go, I have quite a few.

Read more »

Sharing Sunday #18-A Chronic Illness Link Up

Welcome to Sharing Sunday #18!

This has been a super busy month at The Zippy with the launch of E.D.S. Awareness month.

The T-shirts we created to spread awareness are ready, are affordable and can be shipped straight to you.  NO waiting for a minimum.

You can find the link here.

We have also been sharing one E.D.S. Story a Day in our “Real Life Stories” Series.

Read more »

Becca’s Story- A 19 Year Old In an 80 Year Old Body

Becca’s Story-A 19 Year Old In an 80 Year Old Body

Hi!  I am Rebecca V.

I am 19 years old but I feel like I have an 80 year old body. 

I have been diagnosed with HEDS and Fibromyalgia.

My fibromyalgia diagnosis came after the EDS diagnosis.

What does this mean?

It means that my collagen is faulty and my joints are constantly popping, slipping, sliding, and dislocating.   It means that if I do a task for too long (like knitting) my shoulders, arms, and hands will not work properly and hurt for days.  Sounds like fun right???   My body literally falls apart with everyday activities.

Read more »