Paul's Bobblehead Stabilization Campaign Phase II

Hey everyone:

We hope you had a fun-filled Summer and are getting a chance to enjoy these beautiful, precious Fall days before Winter descends upon us once again.

We wanted to thank all of you again and let you know how grateful we are for your generous support during this incredibly challenging time. We are sorry it has been so long since we have been in touch following Phase I of the GoFundMe campaign.

Please refer to the link to refresh your memory by watching the Phase I video if you want to. I want to be sensitive to your time and avoid repeating previously provided information.

https://youtu.be/JX4yCOq_IqU

With the success of Phase 1, we have kept ourselves afloat during this intervening time when a lot has transpired relative to my health and, unfortunately, Elizabeth’s.

We wanted to bring you up to speed. We will keep this brief.

I underwent an interim procedure to temporarily “kill” six of my cervical nerves to reduce the incessant pain I have been experiencing. The procedure was intended to tie me over until I underwent the cranial-cervical fusion (a.k.a. The Big One), originally scheduled for last February in South Carolina, that would hopefully correct the issue permanently. Unfortunately, the stopgap procedure didn’t work, making matters worse.

Then, we discovered that I needed to have a series of four eye surgeries (two per eye) due to complications from my disease. I completed the first round on both eyes and have the second round on Thursday.

In addition, I suffered a pelvic subluxation & fracture due to my condition and the lax ligaments that are supposed to hold stuff together. Recovery has been slow, but I’m making progress. I will still need surgery to stabilize it permanently, but I am doing OK now.

The light at the end of the tunnel that we thought was in sight; namely, the cranial-cervical fusion, had to be pushed out for the reasons I previously mentioned. Due to the increasing complexity of my condition, I have now been referred to a different neurosurgeon. This one is in New York and pioneered the procedure I need to have.

While we are still struggling with our insurance carrier (no surprise there), we are making progress toward the procedure being covered. Unfortunately, that is for professional and facility fees only. No travel. No housing. Nothing else.

As the old saying goes, “When it rains, it pours.”: We recently received Elizabeth’s lab results concerning some issues she has been having. It appears to be related to a kidney/liver issue, which could be serious. She is having an MRI ASAP to assess her condition further.

Also, she continues to be plagued by a chronic cough she developed after contracting a virus 14 years ago. She has been evaluated by just about every conceivable specialist we can find with no success. That said, we continue to pursue every potential avenue of relief.

Her cough makes it virtually impossible for her to work outside the home.

Finally, we have been thrown a curveball that shouldn’t have been unexpected in hindsight. Social Security initially denied my disability claim. In speaking with my attorney, he stressed that this is quite common.

Much like any other insurance, the standard procedure is to deny, as a matter of course, to weed out the claims of those who are not serious and see if they will persevere.

While this is very frustrating, my attorney is still quite confident that we have a strong case and has filed an appeal. While the battle with Social Security moves at its predicable glacially ineffective pace, the system has so much backlog that my hearing is still 8-10 months away.

We are feeling overwhelmed. When we thought we were finally making some progress. Now, it feels like we plowed head-on into a bus.

A leading EDS expert said, “No other medical condition in modern medicine has been as

neglected in such a way as Ehlers-Danlos Syndrome.”

We would, unfortunately, agree.

Switching gears…We understand that you may wonder if we will be able or intend to work again. It is an entirely legitimate question. First, it is important to us that you all understand how badly we miss our work. We have built a consulting business over 20 years. We loved our work and are proud of the hundreds of organizations and thousands of individuals we helped.

However, with our respective chronic conditions, we came to a standstill professionally that fundamentally changed our lives. We have lost everything except our love for one another and our dear friends and families. This was not supposed to be part of the plan and has been a stark reminder of how quickly and dramatically life can change for anyone.

I fully intend to resume working after the surgery and recovery since my neurosurgeon tells me the surgery should effectively alleviate many of my symptoms.

Unfortunately, the physical toll of all the procedures and the financial stress has further impacted my disease. I have been struggling with nasty flares that have left me chronically wiped out.

This has taken so much longer than we could have possibly imagined.

It is humbling to ask for this kind of help, especially for a couple of people who are very used to being the ones with answers and energy!

Life has an ironic sense of humor that can bring even the strongest to their knees.

Anything you can provide to help us out would be greatly appreciated.

We completely understand if you feel you have already done more than enough.

Please pass this along to those you think may want to help.

With love, Paul, Elizabeth & Sander