Invisible Illnesses

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I would like to preface this post by saying that we are not calling anyone out or mad/upset with anyone. However, I am posting this to bring awareness to INVISIBLE ILLNESSES, Disabilities, Diseases, Conditions, … and help to stop people from mocking and laughing at people for things beyond their control.

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We are not ashamed to talk about our INVISIBLE ILLNESSES. If you are wondering What is Gastroparesis? then click here to read our first blog. If you have any questions or do not understand what is going on, then just ask and we will gladly answer you the very best that we can, but please do not assume anything.

True pain can only be experienced by the person that is hurting. To those who do not know the whole story or have felt the pain that we feel, please come walk in our shoes. Until you have watched someone you love struggle to make it through the day, then do not question whether or not it is real!! Until you know what is going on in another persons life, then keep your cruel comments and opinions to yourself. Until you can not do the “NORMAL” things, then do not take like for granted. It is a daily struggle being in pain or feeling sick on the inside while you look fine on the outside.

We are counting on you, our friends and family members, to help us get the word out about the INVISIBLE ILLNESSES that people face. I know that most, if not all, of you would be there for us when we need something, no matter what; but, for those that do not know about these INVISIBLE ILLNESSES please take a moment and look at our More News Page to learn about what Kirsten and those like her, with INVISIBLE ILLNESSES, face on a daily basis.

We are doing our best to bring awareness to these INVISIBLE ILLNESSES and educate everyone about them. Below you can find a list of INVISIBLE ILLNESSES and Rare Diseases.

Achalasia Bardet-Biedl Syndrome Cancer Dandy-Walker Syndrome
Eating Disorders Facial Hemiatrophy Gardner Syndrome
Hallermann’s Syndrome Irritable Bowel Syndrome Kartagener Syndrome
Lafora Disease Muscular Dystrophy Narcolepsy
Oppositional Defiant Disorder Paget Disease Extramammary Rheumatoid Arthritis
Sandhoff Disease Takayasu Arteritis Uveomeningoencephalitic Syndrome
Vertigo Waardenburg’s Syndrome Zellweger Syndrome

Please comment about any INVISIBLE ILLNESSES that you may know about. The world needs to be made aware of the issues.

Disease Conditions, Information, Resources and Guides

Where is everyone?

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When people get sick others typically seem to stay away wanting their friend to have time to themselves to rest, relax, and get well. You know you have done it, I have too. We check in on the sick occasionally, and get the report that the person is getting better. After a few reports of getting better we think that they a doing good and are back to normal.

We hear that they are sick again a little while later and check in on them and get the same report, time and time again. Then we wait to hear other updates in hopes of the person getting well; but, we stop hearing reports on them.

What happens next is that you start drifting apart and lose contact with one another. The visits, phone calls, drop ins all stop.¬† We forget to check in on them. The whole time they are getting sicker and sicker. One day you hear from a mutual friend that your friend is really sick, but doesn’t show any symptoms of any known illness, and this mutual friend tells you that the diagnoses is a rare disease that they have never heard anything about.

Yes, this is a semi real situation. We all know the old adage about not taking today for granted because we are not assured of tomorrow. This is no more than with friends, old, new, distant, or what ever you consider your relationship. I just want to encourage you to keep in touch with your friends, you never know what may happen to members of your community Рclose-nit, estranged, or otherwise  unknown.

Take a moment and think about your FRIENDS

Packing up the dreams God planted
In the fertile soil of you
Can’t believe the hopes He’s granted
Means a chapter in your life is through
But we’ll keep you close as always
It won’t even seem you’ve gone
‘Cause our hearts in big and small ways
Will keep the love that keeps us strong

– Michael W. Smith

FRIENDS

Got Gas?!?

K3

Gas is the state of matter distinguished from the solid and liquid states by relatively low density and viscosity, relatively great expansion and contraction with changes in pressure and temperature, the ability to diffuse readily, and the spontaneous tendency to become distributed uniformly throughout any container.

And to that we all say, HUH?

Gas is what usually helps move an object or as the definition states, through any container (such as the intestine of a human body); but, in our case these objects aren’t moving at all.

Get in the Wayback machine and travel back 2008 with me. We were told that Kirsten had ‘delayed gastric emptying‘; however, that was not explain to us and it appeared to us that it was not a very big issue. The doctor acted like it was just an uncomfortable problem that would work its self out and she would be alright in the ‘long run’.

We have spent the better part of fve years battling an unknown issue. Now Kirsten is being seen by a team of doctors at the Cleveland Clinic in Cleveland, Ohio. She is under going a second evaluation for their Reconstruction/Transplant program. This time for a Isolated Small Bowel Transplant side of this process. We were in Cleveland a couple of weeks ago to begin this process and are in hopes that she will be moved from the eval list to the transplant list once she finishes seeing some of her doctors locally to finish the myriad of test that they need completed to proceed.

We are ready to move forward with this part of our life and we ask that you continue checking in on us through our Facebook page (K^3/K cubed) where you will find links to our other sites. Thanks again for everything y’all have done, are doing, and will do; this would not be possible without you.