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!
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! ❤️🙏❤️
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.
I am excited to share a few more bits of positive news with you!
As my friend Bob would ask, "what's your positive?"
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!
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!
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.
Love, love, love the sentiment expressed by the turtle! YES!
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!
Click link to donate now! https://www.gofundme.com/baildeweyout
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.
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