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More Positive News!

1/20/2019

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Good morning my tribe!

<<<--- Check out a video posted to New York Magazine on 1/17/2019; it's about living with Ehlers-Danlos Syndrome (EDS).  It does a great job summing up the day-to-day challenges!​
I am excited to share a few more bits of positive news with you! 
  • EDS - Iowa is hosting a meet-up here in Des Moines today!  I'm excited that I have the opportunity to attend this event and am hoping to meet others with the same genetic disorder.
  • Guardian (the short-term and long-term disability insurance carrier; if you remember from previous posts, they have extended their appeal review window by an additional 45 days and had requested more documentation) - we're making progress on submitting the newly requested information:  
    • My primary health care provider, Dr. Richardson-Colby, completed the additional documentation, called the Physical Capabilities Evaluation form, late last week and it has been submitted to Guardian (the short-term and long-term disability insurance carrier; if you remember from previous posts, they have extended their appeal review window by an additional 45 days and had requested more documentation).
    • My geneticist, Dr. Bosch, also completed the Physical Capabilities Evaluation form last week and submitted it to Guardian.
    • My therapists' office provided all clinical notes/files to Guardian this past week. 
    • My neurologist and physical therapist are also working to complete the Physical Capabilities Evaluation form to submit to Guardian. 
  • Social Security Disability Administration sent me paperwork on Friday to review and sign; I plan to mail the documents back tomorrow.  Happy for some more forward movement.
  • Started working on filing my taxes yesterday once I was able to download my W-2 from ADP's website.  The only outstanding piece is a 1099-R that I'm waiting to receive that documents the 401k withdrawal in 2018.  Fingers are crossed that I completed it correctly - if so, we will receive a refund this year (minus what will be withheld from taxes that were not paid in 2018).  That will definitely help us!   
  • Submitted my paperwork and fee for the State of Iowa's medical marijuana card.  My plan is - if approved - to utilize the CBD oil that does not have the psychotropic effects.  This will hopefully reduce my pain and anxiety.
  • Facebook lifted the ban on my Weebly blog,  https://www.baildeweyout.com/.   Woohooo!  Now I can share, share, share away on Facebook again!  

As my friend Bob would ask, "what's your positive?" 
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Million Bucks?!

1/18/2019

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Hi my tribe! 
My apologies for being quiet the past few days...  I thoroughly over did it earlier this week and am still playing catch-up with my rest, aches & pains.  

I came across the zebra meme below - and it made me laugh out loud!  Hope you enjoy it, too!  
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In other news...  I received my 90-day supply of three medications this week...  Almost $300 - and that is with insurance!  Oofta!  

I am incredibly grateful for everyone's encouraging words, positive thoughts, well wishes, and donations.  Thank you for being YOU!  


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Humor & Spoon Theory

1/15/2019

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Happy Tuesday morning my tribe!

I wanted to share a lil' bit of humor with you this morning, as well as take a chance to introduce the Spoon Theory.  

Everyone impacted by the winter weather - stay warm & safe out there today!  

Hugs & much love! <3 

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Positive News

1/14/2019

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Good afternoon my tribe!
I'm excited to share some positive news today via my video!  Check it out!  --->>>


Medical term of the day:  Tarlov cyst

Tarlov cysts are fluid-filled nerve root cysts found most commonly at the sacral level of the spine – the vertebrae at the base of the spine. These cysts typically occur along the posterior nerve roots. Cysts can be valved or nonvalved. The main feature that distinguishes Tarlov cysts from other spinal lesions is the presence of spinal nerve root fibers within the cyst wall or in the cyst cavity itself.

Incidence and Prevalence
Small, asymptomatic Tarlov cysts are actually present in an estimated 5 to 9 percent of the general population. However, large cysts that cause symptoms are relatively rare (Kim's note:  some studies estimate that this only applies to less than 2% of the total population). Tarlov cysts were first identified in 1938, yet there is still very limited scientific knowledge available.

An estimated 3 percent of respondents had no pain; 4.2 percent categorized their pain as very mild; 7.6 percent as mild; 31.5 percent as moderate; 38.6 percent as severe (Kim's note:  this is me - severe!); and 15.1 percent as very severe.

Symptoms
An increase in pressure in or on the cysts may increase symptoms and cause nerve damage. Sitting, standing, walking and bending are typically painful, and often, the only position that provides relief is reclining flat on one’s side. Symptoms vary greatly by patient and may flare up and then subside. Any of the following may be present in patients that have symptomatic Tarlov cysts:

  • Pain in the area of the nerves affected by the cysts, especially the buttocks
  • Weakness of muscles
  • Difficulty sitting for prolonged periods
  • Loss of sensation on the skin
  • Loss of reflexes
  • Changes in bowel function, such as constipation
  • Changes in bladder function, including increased frequency or incontinence
  • Changes in sexual function


Reference:  ​https://www.aans.org ​and ​https://rarediseases.info.nih.gov
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FrustratioNs

1/12/2019

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Hi my tribe!  
I know that I have been inundating you with medical information since I began this blog.  I wanted to take a day to provide updates on my appeal for long-term disability and Social Security Disability benefits.

Guardian (Long-term Disability Carrier)
First, I am in the final-level appeal process with Guardian.  They are the long-term disability insurance carrier.  If you remember from my Facebook posts, I was initially approved for short-term disability beginning in November 2017 - April 2018.  Then, suddenly, the approvals and pay stopped.  From what I can gather, a different team had engaged within Guardian and they deemed that my medical condition did not rise to the level of needing to be on a full-time leave of absence/disability.  However, there were zero changes to my health status in the April 2018 timeframe.  

Now, I paid for long-term disability insurance benefits through my previous employer - I even had "upgraded" to the higher tier benefit - which was supposed to provide wage replacement up to 70% of my past wages through retirement age (if disabled). 

I appealed...  Was denied.  Now, I am at the "final-level" appeal - meaning if Guardian denies my claim this time, my only other avenue would be to hire an attorney and sue Guardian.  I received an email yesterday from most recent "primary contact" within Guardian...  basically, the email included a pdf copy of a letter that is to be mailed to me...  it stated that Guardian was exercising its' right under ERISA to extend their review period by up to 45 MORE days and required MORE information from my health care providers.  

Folks, as you can imagine, I am beyond frustrated with this entire process.  I feel that I have done everything "right."  I am med compliant; I attend my scheduled doctor appointments; I provide Guardian with updates every single step of the way.  I reached out to two of my specialists to ask whether they would complete the additional form that Guardian supplied.  Unfortunately, my rheumatologist declined to do so because she does not perform that level of mobility/physical capability testing and besides, she is retiring within the next month - so it would be impossible to see her before then.  I am anxiously waiting for a response from my geneticist.  In the interim, I plan to email a copy to my local physical therapist's office to see whether they would be able to assist me with completing this additional paperwork.  

Social Security Disability (SSD)
I initially applied for Social Security Disability (SSD) to help offset payments that I expected to receive from Guardian (70% of my salary).  This is a common practice in the disability insurance arena - apply for both - the private disability insurance and the government provided insurance.  Your private disability insurance benefits are reduced by the amount they expect you to receive from SSD. 

My initial application was denied - the letter stated that I was "not disabled under our rules." And, that "we have determined that your condition is not severe enough to keep you from working." 

I am in the process of re-filing for SSD utilizing an attorney from Schott & Mauss.  So far, I have been impressed by her professionalism and compassion. The average length of time that the State of Iowa is backlogged to hear cases (actually goes in front of a judge - if appealed that far) is 17 months.  Yep - you read that right - seventeen months!  That figure comes from https://www.ssa.gov/appeals/DataSets/01_NetStat_Report.html.  Ridiculous!  

I'll play the same tune again - man, oh man, am I ever frustrated with the whole process and systems.  I feel it truly penalizes those who are already in a bad way.  
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Q&A

When/how did you contract Ehlers-Danlos Syndrome? 
I didn't; I was born with this genetic condition.

Why did it take so long for a doctor to diagnose you?
I ask myself that question ALL THE TIME!  However, my research has shown that few doctors know much about it.  Most of the incredible individuals that I've met that share this diagnosis have taken a long, arduous route to get here.  Countless doctors, countless incorrect diagnoses, countless days/nights crying about how the most recent doctor is not taking the multitude of symptoms seriously.  

What's with the zebra?
Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.
But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.

So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed.

​​A group of zebras is called a dazzle.
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A group of zebras is called a dazzle.
Do you have questions about my journey, diagnoses, or treatment?  If yes, please feel free to comment on my blog, private message me via Facebook Messenger or use the contact form (may be accessed at the top of this page).  I'll do my best to respond and/or incorporate it into an upcoming blog post. 

Thank you all again for your support and providing me a creative outlet.  Hugs & love! 
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Word of the day:  Dysautonomia

1/11/2019

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Dysautonomia... I hadn't heard of this term until I started reading more about Ehlers-Danlos Syndrome (EDS).  Apparently, it's a group of syndromes that impact your bodies ability to self-regulate - heart rate, blood pressure, etc.  I have two - inappropriate sinus tachycardia (IST) and orthostatic hypotension (OH). 

The syndrome of IST is defined as a sinus heart rate over 100 beats per minute (bpm) at rest, with a mean 24-hour heart rate of over 90 bpm not due to identifiable causes, and is associated with distressing symptoms of palpitations.  IST it is estimated to impact around 1.2% of the population. 

OH is defined as a decrease in systolic blood pressure of 20 mm Hg or a decrease in diastolic blood pressure of 10 mm Hg within three minutes of standing when compared with blood pressure from the sitting or supine position. 
  • Feeling lightheaded or dizzy after standing up
  • Blurry vision
  • Weakness
  • Fainting (syncope)
  • Confusion
  • Nausea

​Information from:  ​http://www.dysautonomiainternational.org 
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Can't put this ebook down!

1/8/2019

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Free ebook by Dutch physicians - written for physicians!  Published in August 2018. ​
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Gratitude

1/6/2019

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Feeling incredibly grateful tonight...  sitting here, tearing up actually... words are so inadequate.  

When I first entered recovery, I started a practice whereby I write at least three things that I'm grateful for every day (well, nearly every day; sometimes the day gets away from me)...  and I share these with others.  In turn, I receive gratitudes from a variety of individuals on a daily basis, too.  It's pretty neat!   

Here are my gratitudes for today:
  • feeling some relief from the financial pressure cooker...  because of YOU, your support, your donations, we have been able to bring our utilities current - this includes electric/gas, water/sewer/trash, cell phone, and internet.  We had received disconnect notices on all - and even had our internet (my lifeline to the outside world when I'm unable to leave the house due to my health) disconnected for awhile. 
  • the bundled cost for our homeowners and car insurance dropped significantly once we removed my car from the policy.
  • I received notice late yesterday that the attorney I really wanted to work with for my appeal with Social Security Disability accepted my case.  We're moving forward!  I have a follow-up phone interview with her on Thursday this coming week. 
  • the itchiness from head to toe that I've had for now four days...  seems to be under better control.  I've been popping the benadryl every four hours (so, doing a better job of staying on top of it - not letting myself get to the point where I'm so itchy that I'm going bat shit crazy!) and am on day two of the nine-day course of prednisone.  And, I was able to wrap up rewashing all of the laundry that was previously washed in ALL's version of the free & clear detergent.  I will FOREVER be a loyal, devoted fan of 7th Generation's zero dyes and zero perfume laundry detergent! 
  • I attended an online GLBT & Allies NA meeting this evening that was open to everyone - regardless of their type of addiction (if any).  We used our computer video cameras and microphones to communicate with each other - taking turns to share our thoughts on the reading.  Maybe 10 of us spoke - out of a group of 32.  I made two new friends - Ryan (the chair) and Josh (fellow addict).  It felt good to talk about the question "how" - how do I remain abstinent from alcohol/drugs?  How do I walk through life on life's terms? 
  • Lastly, yet most importantly, I am grateful today for my tribe.  Thank you for your support and unconditional love!  <3 
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Itchy, Itchy, Itchy!

1/5/2019

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Oofta!  Two days ago, I started feeling itchy from head to toe!  In the past, this has only happened when I 1) changed laundry detergent to a fragranced one or 2) found that I was allergic to a new medication.  

Well...  you'd think I'd learn...  I purchased ALL's version of free & clear - used it earlier this week on clothes and bedding. It obviously just did not measure up to my 7th Generation free & clear.  

I've been taking benadryl often and started a course of prednisone today.  I was able to meet with a doctor over video conference this morning - thanks to our new health insurance - it was only $20 whereas a trip to urgent care would have cost $60 out of pocket.  It was via LiveHealth Online.  Doctors are available 27/7 for simple issues. 

Hopefully, by rewashing everything, continuing benadryl, and starting the prednisone, I'll be in better shape soon!   
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Facebook Frustration

1/4/2019

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As this blog title suggests, I am quite frustrated. Someone (I do not know who) reported my posts - those that contained my GoFundMe and blog links - as spam.  Any "spam" is against Facebook Community Standards.  Therefore, every single post and even my chats that referenced these links have been systematically removed from Facebook.

I reviewed Facebook's Community Standards - specifically the section where "spam" is discussed - and am not finding any violation whatsoever.  Another friend, who is incredibly intelligent, also scoured through the Community Standards - and could not find any violation either.  If you would like to review - please access the Community Standards section on spam here:  https://www.facebook.com/communitystandards/spam/. 

To add to my frustration...  Facebook does not offer an appeal process for when something is deemed as "spam" - further, based on my research, most of the reports of "spam" are reviewed by computer algorithms - and not by a human.  

Of course, there is not "Contact Us" option for Facebook to provide feedback - that this is simply a link to a GoFundMe site and my personal blog.  I see GoFundMe links all of the time on my Facebook newsfeed.  Heck, there are even Facebook pages and groups devoted to only sharing GoFundMe efforts.

I am hurt that someone would deem my posts "spam."  If you do not want to see any more of my posts - simply unfollow or unfriend me on Facebook.  It's that easy!

I am frustrated at the behemoth that is Facebook - and that it does not afford an opportunity for me to interface with a human, let alone appeal or send feedback.   In a desperate attempt to have my posts reinstated, I sent a message to Mark Zuckerberg through Facebook Messenger last night (I assume that he probably has a team of employees monitoring his messages - makes sense, right?)  Of course, I've not heard anything yet.  

If anyone has any other ideas for how to contact Facebook to resolve this mess, please reach out to me.  

Please help this blog go viral #BailDeweyOut
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New Research!  Video Update - Take 3

1/3/2019

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Good morning my tribe!

As you'll hear on my most recent video, (Check it out!  --->>>), I'm excited to find additional research on two potential syndromes/disorders that I may also battle...  [EDIT:  My geneticist advised that many individuals with EDS also have other genetic and/or autoimmune disorders, which may include those listed below.]  These include:
  • Mast Cell Activation Syndrome (MCAS)
  • Common Variable Immune Deficiency (CVID)

In March, I'll visit with the University of Iowa's Allergy & Immunology team, where we will explore both of these as possible reasons why I am continuously sick - sinus, ear, skin, and respiratory infections. 

I've included information below about both...  As always, please do not hesitate to reach out with any questions.  Happy reading! <3 
​

Mast Cell Activation Syndrome (MCAS)?
Mast cells, a type of blood cell, play an important role in the body’s immune system. They reside in all body tissues and form part of the body’s initial defence system. Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. Amongst the triggers are a variety of different foods, exercise, chemicals, fragrances and stress. Many sufferers struggle to identify their triggers and continue to discover new triggers for many years after diagnosis.

MCAS forms part of a spectrum of mast cell disorders involving proliferation and/or excessive sensitivity of mast cells, it has been identified since 2007. It features inappropriate mast cell activation with little or no increase in the number of mast cells, unlike in Mastocytosis*. MCAS causes a wide range of unpleasant, sometimes debilitating, symptoms in any of the different systems of the body, frequently affecting several systems at the same time. The onset of MCAS is often sudden, affecting both children and adults, sometimes in family groups, mimicking many other conditions and presenting a wide-range of different symptoms that can be baffling for both the patient and their physician. Often there are no obvious clinical signs since MCAS confounds the anatomy-based structure underpinning the traditional diagnostic approach. Very often Mast Cell Activation Syndrome is hiding in plain sight.

Common Variable Immune Deficiency (CVID)Common Variable Immune Deficiency (CVID) is a type of primary immunodeficiency, which is defined as an immune system dysfunction typically caused by a mutation in a gene or genes. The World Health Organization (WHO) recognizes more than 180 primary immunodeficiencies ranging from relatively common to quite rare.

CVID is one of the most prevalent of the symptomatic primary immunodeficiencies and manifests a wide variability of symptoms and range of severity. It is considered a diverse group of diseases due to a number of causes, most of which are still unknown. . CVID is characterized by a low level of specific proteins (called immunoglobulins) in the fluid portion of the blood. This results in a loss of antibodies, and a decreased ability to fight invading microorganisms, toxins, or other foreign substances. These immunoglobulins are produced by specialized white blood cells (B cells) as they mature into plasma cells.

Please – if you are reading this blog – I implore you to donate.  Donate whatever you’re able to – $1, $5, $10, and if you’re unable to donate – please share my story.  

Please help this go viral #BailDeweyOut

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Special shout out to Safe Home Rescue!  Thank you for all of your support and all that you do for the animals!
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Video Update - Take 2

1/2/2019

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Hi folks!  I've uploaded a pdf that explains Ehlers-Danlos Syndrome (EDS). This information was compiled by Joni Bosch, a geneticist at the University of Iowa. 

​I've learned since receiving this diagnosis that every single system (as outlined in the posted document) is impacted by my hypermobility.  Plus, I can do cool party tricks - like touching my thumb to my wrist!  lol! 

Please feel free to download, read, and ask any questions!   

I've also uploaded a second video update.  Check it out! --->>>

Special shout-out to the Women's Cultural Collective - thank you for your support!  
EDS Overview
File Size: 284 kb
File Type: pdf
Download File


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​Love, love, love the sentiment expressed by the turtle!  YES!

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Video Update - Take 1

1/1/2019

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Oofta!  Please bear with me...  I've never done a video update before - always shied away from it.  I *think* I've finally got it figured out.  Check it out!  ----->>>>

Wow - after only one day (well, partial day really)...  I am absolutely amazed by the donations received thus far!  $445  

This will help us pay down some of our outstanding utilities bills.  Thank you from the bottom of my heart!  <3 

Also, if anyone would prefer to donate funds directly to our utilities (gas, electric, water, trash, sewer, or cell phone), mortgage, or medical bills, please let me know - I would be happy to provide you with their contact information and our account #.

Thank you again my tribe!    

Please – if you are reading this blog – I implore you to donate.  Donate whatever you’re able to – $1, $5, $10, and if you’re unable to donate – please share my story.  

Please help this go viral #BailDeweyOut

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    Author

    Kim Dewey
    pictured with Walker, the "Tail-less Wonder"

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