I have now survived two terminal diagnoses, and remain as funny and irreverent as ever. While there is nothing funny about this situation, if you cannot get a good belly laugh from the macabre and absurdity of it all… well, then… you die. Now to be fair I have not run a proper academic study on this, and I am a sample size of 1… but I consider my resilience in the face of constant near-death experiences to be telling.
In the past two years I have survived over 300 episodes of anaphylaxis. The respiratory ‘I can’t breath’ type and the neuroviseral paralyzing ‘I can no longer walk, sit-up, roll-over, raise my arms’ type. I have had to relearn how to walk… three times in 18 months. I am confident my physical therapist finds me… demoralizing. I should send her flowers.
I am also confident that all this ‘anaphylaxing’ is a world record, but its not exactly something I want to show up under a google search of my name -so we will leave the world record people out of this.
Any hoo… the good news is that… after 18 months of continuous testing (we estimate over 400 tests were performed), repeat hospitalizations in research hospitals (roughly 10 hospitalizations all told), and work-ups from nearly every branch of medicine – we finally found some answers.
I believe I now have 16 rare disease diagnoses all of which like to play off each other. Its nothing less than a rugby scrum frankly. BUT the one disease that is driving much of my current suffering and that I find nearly impossible to survive is Lambert Eaton Myasthenia Syndrome (LEMS) -its eating my lunch. Or to be precise, its paralyzing my lungs and diaphragm.
Despite is being exceedingly rare – there are good treatments available for this condition – which my insurance (Blue Cross Blue Shield of Texas) promptly blocked all access to. My dedicated doctors have conducted innumerable appeals and peer-to-peer consultations and have fought to gain insurance coverage for my treatments for over 10 months. We have had some successes, but ongoing denial of coverage continues –including to two of the therapies that have worked best in pursuing remission – weekly high dose IVIG and an ongoing program of the biologic chemo Rituxin.
After all this investigation – where we now know what it is and how to stop it -I’m not going to settle for a life of around the clock Benadryl infusions or a lifetime supply of Epipens. Which brings me here to the good people at HelpHopeLive.
To date, my dear husband and I have spent over $200k keeping me alive.
I currently have close to $500k in hospital bills.
And I need more then $600k to fund the actual treatments (e.g.IVIG and Rituxin) that are the difference makers in my life.
And so today I would ask that you consider making a donation to keeping me above ground, sentient, and ambulatory. And if not for me, then please consider a donation for my beloved daughter -who at 11 has seen way too much already. My survival goal is another 10 years so I can see her grow up.
Thank you so much.
—–
Family and friends of Shelby Spencer are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Shelby has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
