Sharing Sunday #5

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Sharing Sunday #5

 

“Sharing Sunday” Link-up will be 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.

 

 

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Sharing Sunday #4

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Sharing Sunday 4

 

“Sharing Sunday” Link-up will be 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.

 

 

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Sharing Sunday #3

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Sharing Sunday Link Up #3

“Sharing Sunday” Link-up will be 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.

 Loading InLinkz ...




Sharing Sunday #2

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Sharing Sunday Link Up #2

“Sharing Sunday” Link-up will be 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.

 

 

 Loading InLinkz ...




Sharing Sunday #1

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Sharing Sunday Link Up 1 2016

“Sharing Sunday” Link-up will be 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.

 

 Loading InLinkz ...




Clone Parent Wanted

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Note:  This was written during a small breakdown tonight when I should have been doing other things so it may have been a bit rambly.

We are currently taking applications for a clone (of me).

Applicants must:

Be willing to stay up until ALL hours with teenage children while they are struggling with various health issues AND still function the following day to assist and drive other children where needed (personal health issues or not).

Be able to schedule and remember the details of a minimum of 5 phone calls to specialists, therapists, and doctors per week.  WHILE scheduling appointments 6 months out and remembering when your spouse will be on nights or out of town for a week at a time AND what school schedules are so that a minimum number of days can be missed.

Be able to drop everything at a moment’s notice when doctors call to reschedule for an immediate visit.

Be able to rush to the ER at a moment’s notice AND have everything said child will need already in a bag (braces, meds, appropriate drinks and snacks, neck supports, electronics, phone numbers, chargers, etc…)  AND everything prepared for other children to take care of themselves during said ER visit.

Continue Reading the full Article…





How people look at you if you are using a wheelchair without being paralyzed.

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How people look at you if you are using a wheelchair without being paralyzed.

A personal story by Karina Sturm

With a chronic condition like Ehlers-Danlos Syndrome I am used to aids like bandages for all my joints and neck braces but usually I try to hide them as much as I can.  I do not want to look sick.

But there are situations when you need to accept extra help, like at the airport after a 10 hour flight.

All my joints hurt and I had the worst brain fog ever.  I had to book airport assistance and a wheelchair and I needed help with my luggage.

Last year it was the first time I had to use the wheelchair and I had no idea what this would mean to me.  I am a very stubborn and proud person and had a hard time to accept that I am chronically ill with a huge possibility of getting worse.

Continue Reading the full Article…



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Scariest Night Update 2 (Hospital Stay # 1)

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To read what constitutes the scariest night of our lives and why we are sharing updates click here.

To read why we are heading to the ER again click here.

Please note that this was written (June 18th and it is now July 30th.  I will be sharing updates daily until I am caught up to where we are in our journey now).

Being the control freak momma I am, I didn’t just load my daughter into the van and run her to the ER.  Instead, I packed a cooler, a hospital bag and made arrangements for my pets and other children THEN we left for the hospital.

I asked my hubby to drive so that I could support my daughter’s head on the two hour car ride.   If she wasn’t resting her head on my hands behind her head she was leaning forward on her huge stuffed penguin to relieve the pressure on her neck.

Let me just say we have never, ever been to Carle hospital, we have visited in one of their clinics but never to the hospital itself.

We were checked in almost immediately but then had a fairly long wait in the emergency waiting room.  After all it was after 8:00pm on a Friday night.  I was thankful we had brought her Gatorade to help keep her fluids up while we waited.

Hanging in the waiting room at Carle

Continue Reading the full Article…





Scariest Night Update 1

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Scariest Night Update 1
Please excuse the delay on the update but I have been spending the last few days tending to my daughter (mostly just letting her support her head on my arm or leg to help fight her never ending headache).

After the terrifying incident on June 14th (read story here.) I began doing more research into CCI and what other things might cause my daughter’s symptoms both that night and the days to follow.  I also asked around in the local EDS community for info on Illinois doctors with experience in EDS and CCI or other head issues.

I printed a copy of the CCI info, recorded the names of experienced doctors and institutions and scheduled an appointment with our family physician for Wednesday afternoon.

My daughter was

  • Still struggling to breathe when she laid flat, or turned her head side to side or looked up.
  • She had a non stop headache that increased regularly.
  • She was still very unstable on her feet.  Shaky “like jello” and stumbling a lot.
  • She struggled to form basic thoughts and would stop mid-sentence and forget what we were discussing.
  • She would suddenly be “spaced out”.  Sitting there staring in space and not having a clue what just happened.
  • She drew a couple of shapes on my notebook as I spoke with her geneticist office (these were no bigger than 1/4 inch each) and proceeded to point out that it made her hands shake and turn a strange color and made her head hurt.  When she stood up to change positions she once again slid to the floor like a piece of spaghetti.
  • Even though she was only taking Aleve and Loratidine she looked as though she was heavily sedated.  Her eyes did not open far or seem to focus well.
  • The only thing that seemed to relieve the headache any was to rest her head on my arm or shoulder so that it is slightly pressed forward.
  • She struggled to breathe and her mandible would shake even when she was sound asleep if she turned her head or let it fall flat.

Medical Bag

As I suspected our doctor was concerned but not really sure what the cause might be.  We discussed her symptoms and I gave him a copy of the hospital results (which of course showed  no problems).  We also discussed possible causes and then I asked him if he had ever heard of CCI and if he would take a look at the info and see what he thought of it being a possible cause.

He did and after reading it agreed that it sounded very likely but of course we had NO way of pursuing the diagnosis in our local office or hospital.  He did agree to call the first name I had on our list so that we could beginning pursuing a cause ASAP.

The 20 minute ride home had me almost returning to the ER due to the pain my daughter began experiencing in her head.  However, she asked me to wait because it seemed that the pressure of riding in the car was causing the increase.

The nurse called me within 10 minutes of leaving the office and stated the info had been faxed and I should be hearing from DR. F. (the neurosurgeon’s office shortly).

I waited the rest of that afternoon (still communicating and researching with other EDSers) and into the next for a call from the neuro office.  When after 24hours I STILL had not heard ANYTHING I called the office and asked if there was a delay with information, insurance, etc… and the response was; “No, we simply have begun a new system and new referrals must fill out a form before we can put them in the system.  I am working on faxing the forms out now.”…..I replied with a polite “Thank you, I am sure my doctor will return it immediately.”

The next morning we still had not heard anything so I called my local PCP office again and asked if they had received the fax.  NOPE.  So I offered them a separate name (4 hour drive) and asked for a different referral.

THEN

My daughter showed me that the soft tissue on the back of her head had continued to swell and the blood vessels on the inside of her left eye had ruptured so that ALL you saw was red from the retina to the inside point.

I immediately called the office again and asked for an appointment with our PCP.  His day was booked but after consulting with him they chose to take my daughter as add-on.  By the time we went 3.5 hours later the bleeding had reduced to only pronounced vessels but the pain and swelling were still there.  When the doctor touched the back of her head to check the swelling her arms turned white, numb and tingly.

We discussed the difficulty we were having with getting an appointment and the fact that she still wasn’t right and seem to struggle with the turn of her head.  I explained that I had considered returning to St. John’s ER (our favorite, you can see why here) for follow up testing and treatment because I was very concerned about permanent blood flow issues.

He suggested that we seek an emergency room with a neuro unit capable of handling our situation if it was indeed cause by CCI.  We discussed our options and I left promising to drive careful and slow in the nasty rain we were getting.

I returned home, researched the closest hospitals (since riding in the car caused her pain) and chose CARLE in Champaign (I knew at least two neuros there had experience with both EDS and CCI).

I will share about that experience in the next post as I need to take a break and take care of my baby.

#scariestnightofourlife





The Scariest Night Of Our Lives

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Today’s post is coming from a worried momma.  A momma who is looking for ideas and answers.  Below you will find another personal story.  I know this is the second in a row but it’s one that is weighing heavily on my heart.  It was the scariest night of my ENTIRE life.

Scariest Night

Continue Reading the full Article…



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