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Just posted -> Updated Medication & diagnoses List

5/25/2019

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If interested, please check out the latest information posted under the "About" section of my website.  I made a few edits on the information presented, as well as uploaded a new Medications & Diagnoses as of May 2019 document.  

Also, for those that may be curious...  below is a listing of many of the infections I experienced over almost a two-year period.  (note - it was not an exhaustive list).  Mind boggling! 

​Thankfully, my allergist/immunologist was able to confirm through various lab work that I do in fact have an auto-immune deficiency.  Now, more testing to come to help determine the exact one.  Stay tuned!
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Red Nose Day & Mayo Update

5/24/2019

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Yesterday, my dentist office celebrated Red Nose Day. Here's my mug with my fav dental hygienist, Nikki. Taken about 9:30 am.  I’m lucky to have this amazingly kind, compassionate, and gentle dental hygienist on my team! Dr. Small is wonderful, too!

For every picture snapped with a red nose on there and posted to their Facebook page, the doctor's are donating $5. To learn more...https://rednoseday.org/faq

In preparation for heart surgery, I needed to get my 6-month cleaning in and checked out for cavities. I return late next month to have one filling re-done that fell out a few weeks ago and to have a whole host of x-rays. The dentist has to certify that I don't have any teeth issues - such as infections, cavities, etc... anything that could lead to troubles down the road.

So... that leads me to my "Mayo Update".... 

Maru and I had a whirlwind trip last Wednesday and Thursday up to Rochester, MN.  Wednesday was reserved for multiple tests - some of which felt repetitive, but I suppose that allowed the physicians to see any changes that may have occurred since the original test(s).  On Thursday, we went to the heart class, saw the cardiologist, more lab work was done, and met with the cardio-thoracic surgeon.

Learned a few new things, but overall, the information provided was a reinforcement of our understanding from the doctors in Des Moines.

Everyone agrees - yep - mitral valve needs to be replaced with a mechanical valve (pictured below). A repair is not an option.  The anterior side of my mitral valve has prolapsed.  The posterior side of my mitral valve has what is called stenosis (it has thickened and is not moving properly).

​Before surgery can happen though, a few more tests are needed, which can be done at home, in Iowa City, and/or the day before surgery. (Such as a CT scan with contrast, allergy testing of certain antibiotics, lab work, etc).

Also, we were surprised to learn that I’m anemic. I’ve never been anemic!  Oofta! So, I’ll be prescribed an iron supplement. That will need to be corrected before surgery. Lastly, I’ll need a letter from my dentist clearing me for surgery (see above about Red Nose Day).

Another wrench...  I have costochondritis.  What is this?  It is an inflammation of the cartilage that connects a rib to the breastbone (sternum). Pain caused by costochondritis can mimic that of a heart attack or other heart conditions.  Fortunately, my primary doc has prescribed a course of prednisone to try to reduce the inflammation.  So far, it is helping.  (I've suffered with chest pain since April 29th.  Finally, we now know why and it is not life-threatening.)

Good news!  The cardio-thoracic surgeon believes that we have sufficient time to address the aforementioned items - that we are not in an emergency situation.

Therefore, surgery has been scheduled for Tuesday, August 13th. The only option for the surgery is to crack my chest open. This will require me to probably be in ICU 2 nights and then in the hospital possibly 5 more nights.  The surgeon set appropriate expectations - I will likely be on a ventilator until I am transferred from ICU to a regular bed on the unit.  This is because of my sleep apnea. 

Then, yes, inpatient cardiac rehab has been recommended.  I am researching facilities in the greater Des Moines area.  

Typically recovery is 8 weeks. Mine will be longer due to my other health issues - especially the Ehlers-Danlos Syndrome - as it can increase the time needed to properly heal.

The silver lining in all of this - Dr Geske, the cardiologist, said that I’m probably carrying an extra 5 lbs of water weight on each leg! So, the lasix (diuretic) is being doubled.

Overall - we were greatly impressed by the Mayo Clinic!  The campus was gigantic - everyone - absolutely every single person we crossed paths with that worked for Mayo - were incredibly nice and helpful.  I am happy with my doctors and am confident that I am in the right hands!  

Thank you again for your unwavering support!  Hugs & love! ❤️🙏❤️

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Countdown:  3 Days

5/12/2019

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Alrighty my tribe... if you're a prayer warrior or simply prefer to send good intentions/positive vibes out to the universe, I could use your support...

Only 3 more days left... I will be at the Mayo Clinic in Rochester, Minnesota on Wednesday and Thursday this week. Lots of tests planned for Wednesday and Thursday is reserved for meeting with a cardiologist and a cardio-thoracic surgeon.

I sincerely hope that they will be able to schedule my heart valve replacement surgery quickly. I want some semblance of my life back.

Since Monday, April 29th, I have been living with constant chest pain. It is incredibly discombobulating! This is in addition to shortness of breath, dizziness 24/7, overwhelming fatigue, and a heaviness upon my chest (not to mention chronic pain joint/muscle pain from all of my other issues). My world seems to continue to grow smaller as my health deteriorates.

Thank you all for your continued support. I am especially grateful for my wife, Maru.

Hugs & love! <3
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Chest pains, ER visit, & more... Oh my!

5/1/2019

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Hellllllllo my tribe!

On Monday, I went to the ER with chest pains. It was radiating up through my left shoulder, up into my neck. The heaviness that I've felt on my chest lately was worse and I found myself coughing more often (a bit of fluid in the lungs). They ran an EKG, took a chest x-ray, and did lots of labs.


The good news is that nothing "new" is wrong and I did not have a heart attack. The bad news is that this may be my new "normal" until after surgery.

Yes, I still am having chest pains, increased heaviness across my chest, and am continuing to cough more.

I saw my primary physician this morning. She agreed. These new symptoms all stem from my prolapsed mitral valve. Fortunately, I head to Mayo Clinic on the 15th & 16th. Just about 2 weeks away.

​Special thank you to Courtney, Jodie, & Carl for helping out on Monday.
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Heading to Mayo Clinic

4/19/2019

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My tribe...  since my last post, I have had an angiogram and have met with a cardiac surgeon here in Des Moines.  Unfortunately, local cardiac surgeons - as well as those with the University of Iowa - have declined to accept my case and perform the much needed mitral valve replacement surgery on my heart.  Props to these surgeons, who are willing to place their egos aside, and recommend that I travel to the experts - those that see more than just one of "me" and my particular complications in their entire career.  (Complications are mainly around my Ehlers-Danlos Syndrome). 

So...  it's off to Mayo Clinic in Rochester, MN we go! 

I was able to chat with Mayo Clinic Cardiac Valve Clinic scheduling today... I'll be seen on Wednesday, May 15th and Thursday, May 16th. The first day, I'll have additional cardiac testing completed and then, the second day, I will be seen by a cardiologist and a cardiac surgeon.


On Facebook this evening, I posted a plea, looking for recommendations for free or cheap lodging for us on May 15th.  A member of our tribe (who wishes to remain anonymous) answered our prayer to the universe...  they are using their Marriott Reward points to cover the costs of our hotel.  The hotel, which is nicely appointed, is quite close to the Mayo Clinic Hospital - St. Mary's - which is where we'll be spending most of our time this upcoming trip.  What an amazing, generous gift that a mere "thank you" feels so inadequate.  

Tonight, I cried tears of joy.  I was overwhelmed by the generosity and feelings of gratitude. 

Thank you for tuning in for another update and continuing to support me on this journey.  Hugs & love to you my tribe! <3 
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MAYDAY... MAYDAY...

3/29/2019

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My tribe...  my sincere apologies for being quiet these past several weeks.  I have been attempting to accept my new reality...  I had what is called a transesophageal echocardiogram at the beginning of March.  It confirmed that my mitral valve is prolapsed, causing severe mitral regurgitation.  Heart surgery is in my future - to replace that mitral valve.  It's not a matter of IF, but WHEN at this time. The Ehlers-Danlos Syndrome (EDS) is the likely cause of my mitral valve prolapse.  I see my cardiologist again on Monday to discuss further. I return to University of Iowa on April 9th to meet with the Genetics department.  It may be that I have a different form of EDS, such as cardiac valvular.  Additional testing is likely needed.  

My fatigue has been crippling this past month, dizziness plagues me a good 90% of the time, I am quick to become short of breath, and there's a heaviness on my chest 24/7.  My driving privileges (and oh, yes, they are a privilege) have been taken away from me for the most part.  It's just not safe to have me dizzy AF driving around.  

Also, I was diagnosed with Mast Cell Activation Syndrome (MCAS) by my new allergist/immunologist, Dr. Davis, with University of Iowa. We were able to tweak some of my allergy (5 different ones per day) and antacid (2 different ones per day) medications - already seeing improvement! 


In the midst of all of this, we are still waiting for a final decision from Guardian, the long-term disability vendor and am working with an attorney for my Social Security Disability application. Due to the financial strain of my health care costs and not receiving any pay since April 2018, we are facing a harsh reality.  We are 4 months behind on our mortgage and behind on utilities.  

We are requesting a loan of $10,000. This will enable us to catch up on mortgage payments, as well as catch up on other outstanding bills, such as utilities and mail-order pharmacy (90-day prescriptions).

I have uploaded two documents - a draft loan agreement doc that I've utilized in the past - updated for our current situation - and an Excel spreadsheet, calculating the interest payments/payoff date.

I set the interest at 2 points above prime (prime rate today is 5.5% - I wrote the doc for 7.5%). Ideally, we would pay off the loan in totality once my long-term disability and/or Social Security Disability is approved and back wages are paid. If however that process continues to be prolonged, I wrote the agreement to reflect that repayment would begin in December 2019 over a 5-year term.

Between us, we have no credit cards, nor any outstanding credit card debt. The only loan that we have is the mortgage on the house. We own Maru's car outright - it's a 2014 Nissan Xterra. My student loans have been discharged - due to permanent disability.

I need to make payment arrangements for past-due medical bills for both Maru and me. We currently have about $35k in outstanding medical debt between the two of us. And, at some point, I will need to make payments on what was still owed for my car that was repossessed - which is just shy of $8k. 

If you or you know of someone who is in a position to help us with a personal loan, please contact me.   
Loan Agreement DRAFT
File Size: 285 kb
File Type: doc
Download File

Payment Tracker
File Size: 139 kb
File Type: xls
Download File

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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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Hear our plea

12/31/2018

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Thank you to those who have donated thus far... you are helping reinforce my belief in humanity... <3

I have always believed that if you do your best to be a good person, that you speak up against injustice, that you help others whenever possible, that you are kind... that ultimately, things will work out.

Karma, Universe, Higher Power, God, Shiva, Budha, Goddess, Allah, Krishna, Great Spirit, Jehovah, Vishnu, - please hear our plea for a healthier (physically, emotionally, financially) 2019!

#BailDeweyOut

Click link to donate now!  https://www.gofundme.com/baildeweyout
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Repossessed

12/31/2018

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...excerpt from yesterday's blog... 

7:00 am
 and my emotional bottom was about to hit.  The doorbell rings.  It’s a guy I’ve never seen before.  Long-sleeve gray t-shirt with denim jeans, work boots.  He had a white tow truck pulled into our driveway and had already hooked up my 2014 Hyundai Tucson.  It was being repossessed.  Thankfully, this guy was gracious enough to let me remove the contents from my car. Johnathyn helped. 

....today's thoughts...  ​
I am still reeling from yesterday's events...  However, what I am holding on to are the generous, kind, and encouraging responses already received this morning from my tribe.  YOU are a blessing!  <3 
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Click link to donate now!  
https://www.gofundme.com/baildeweyout
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Creating #BailDeweyOut

12/30/2018

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On December 30, 2018 I made the decision to begin documenting my journey and initiate a GoFundMe campaign, www.gofundme.com/baildeweyout.  

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 on social media.  #BailDeweyOut
 

I thought that my emotional bottom happened earlier this month, on December 14th.  I was scheduled for an appointment with a pain management psychologist that morning…  I expected there to be some discussion of how this past year had gone and my background, then switch to how she may be able to help me better cope/manage my chronic pain.  See…  I was just wrapping up tapering off all pain medications (primarily hydrocodone) – that I had been prescribed for years.  I took these pain meds in order to function.  What I walked into was a full-on psych eval – lasting nearly 90 minutes – with 5 different assessments being administered.  It was the very first time I was not inhibited; I was 100% honest.  I did not fear any reprisal from an employer.  “Emotionally drained” doesn’t even begin to express how I felt once the session concluded.  Major depressive disorder, derealization/depersonalization disorder, and generalized anxiety disorder.  To compliment my previous diagnoses: obsessive compulsive disorder (OCD), post-traumatic stress disorder (PTSD), excoriation disorder, dysthymia, and alcoholism (in remission 8+ years).

I was wrong.  My true emotional bottom happened today.  Sunday, December 30, 2018 will forever be etched in my memory. 

4:00 am and I was wide awake.  Damn internal clock!  After decades of rising early, I cannot seem to change my circadian rhythm.  Awoke severely congested; self-diagnosed as a full-blown cold.   

7:00 am and my emotional bottom was about to hit.  The doorbell rings.  It’s a guy I’ve never seen before.  Long-sleeve gray t-shirt with denim jeans, work boots.  He had a white tow truck pulled into our driveway and had already hooked up my 2014 Hyundai Tucson.  It was being repossessed.  Thankfully, this guy was gracious enough to let me remove the contents from my car. Johnathyn helped. 

7:15 am and my emotional bottom is in full swing.  See…  I changed to present tense in my writing because I’m still living in my emotional bottom. 

7:45 am and Maru and I are engrossed in conversation, sitting in our living room.  We’re brainstorming, how can we possibly bring in more funds so that we do not lose more; so we do not lose our furbabies; our home; we don’t let down our roommates (also in recovery); our pride; our sanity.
  • Rent out space in our 2-car garage.  Perhaps someone in the neighborhood has a boat, car, motorcycle, or something else that needs to be stored indoors for the remainder of winter.
  • Rent out our 3rd bedroom to another individual living a sober lifestyle.  (our 2nd bedroom is currently rented out and has been for nearly a year).
  • Maru could offer catering for in-home wine dinners, help with meal planning, and meal prepping.  (may prove difficult given Maru’s varying work schedule and long hours)
  • Ask for rides from friends to AA and Al-Anon meetings to save on gas costs.
  • Expand in-home doggy daycare to one more pup on Monday, Wednesday, Friday (or Saturday) and/or offer daycare on Tuesday, Thursday, and Sunday. 
  • Seek new in-home doggy overnight boarding – for when families are on vacation or out of town for work.
  • Collaborate with friends to offer pet sitting services – such as caring for cats in their own home – feeding, changing water, and cleaning litter boxes – whenever their families are traveling. 
  • Donate plasma. (previously turned down based on medical conditions and prescription medications).
  • Sign-up for medical clinical trials that offer compensation. (may or may not be viable).
  • Sell Maru’s beloved motorcycle. (doable; it’s just not necessarily the best time of year to get the most $$ out of it).
  • Pick up odd part-time jobs that are HR, compliance, or customer service focused.  (may or may not be viable; honestly, I do not yet feel physically, emotionally, mentally stable to return to work.  My primary health care provider is against me returning to the workforce right now.)
  • Ask family, friends, acquaintances, hell, even strangers, for help to bail me out of this nightmare.  #BailDeweyOut was born.
 
This journey, my plunge into this dark abyss began in the fall of 2017 (although, when I look back, this turning point had been building for decades). I was having difficulty working – extreme fatigue, chronic back, overall muscle, and joint pain, tremors so severe it interfered with my typing and talking, intermittently experiencing drop foot, debilitating muscle spasms, horrific brain fog where I would lose my track of thought, difficulty understanding complex concepts, unable to find my words, frequent gastrointestinal distress, incontinence, depression, anxiety, and the list goes on... 

At the time, I was working as a director, with a great company - Aasonn.  It was an HR-software consulting (and at one point, an HR outsourcing) organization.  I loved my career!  (Admittedly, throughout most of my career, I was a verifiable workaholic.)

I started by taking FMLA intermittently, then began a long-term medical leave in November 2017.  As part of my leave, I applied for short-term disability.  After much back and forth, the insurance carrier, Guardian, approved my disability through mid-April.  At that point, I was to transition to long-term disability.  However, Guardian denied my claim, despite zero changes to my health status.  I also applied for Social Security Disability; it was denied.  (A common story I hear from others is that most (if not all) claims are initially denied).  A local attorney is reviewing my case and will be letting me know soon whether she will represent me for my SSD claim.

I was shocked that both of my claims were denied.  Even the US Department of Education approved nearly $80k in student loan forgiveness due to my health.  

Even more health challenges plagued us this year…  Maru had two surgeries earlier this year – one on her right shoulder to “raise the roof” for her muscle to move and the other to remove an ovarian cyst (size of a football; they “partially” drained it – enough liquid to fill a 2-liter pop bottle) with a complete hysterectomy.  The time off without pay; the reduction in pay while Maru was on short-term disability; and my lack of income necessitated us draining our savings, maxing out our credit cards, and cashing in every penny we had tucked away for retirement within our 401k’s.

Throughout the year, I continued attending appointments with a variety of specialists (rheumatologist, geneticist, internal medicine, neurologist, etc) with the University of Iowa in Iowa City.  I was given new diagnoses, such as a genetic disorder called Ehlers-Danlos Syndrome (EDS), vitamin B6 toxicity, essential tremors, a leaking mitral valve.  Another diagnosis that we are working to rule out, which three specialists that I’ve seen believe I have, is medication-induced Cushing’s Syndrome.  I made the trek to Iowa City again last Friday to have my adrenal gland function tested.  I’m hoping to have the results this week after the holiday. Doctors are also wanting to rule out Mast Cell Activation Syndrome...  I have an appointment with a MCAS specialist at the University of Iowa in March. 
 
Because of these health challenges, we are behind on every single utility, mortgage payments, and owe hospitals/clinics/doctors nearly $30,000.  
 
On the About section of my website, you will find my ICD-10 diagnoses listing as part of this plea for financial help.  Not going to lie, it is lengthy and somewhat depressing.  I also posted my currently prescribed medication list on the About section of this site.  I will always be open and transparent; I welcome any and all questions related to my health. 
 
Please – if you are still reading this – 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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