The realization that you have an incurable autoimmune disease is not only unsettling, it changes everything. If there is an effective treatment that suppresses the symptoms, you can learn to live with it, provided that you can afford the treatment, which is fantastically expensive, and you must take the injections every two weeks for the remainder of your life. If you cannot afford the treatment, you are in serious trouble.
Events of this kind are unexpected, but they can happen to anyone, anywhere, and at any time. They tell you that there will be unrelenting turbulence for the remainder of the journey. Such events reveal just how precarious our existence is. You realize that things are going to be harder for the remainder of your life. Fate has imposed unexpected limitations, and you must do your best to adapt to the new reality.
Disease limits you. It introduces greater uncertainty. It feels like the ground beneath you is no longer solid, but elastic. You must reform your understanding of everything you thought you knew. New laws of physics are emerging from the old and you struggle to process the new information. It comes at you fast and furious. Somehow, you must find a way to coexist with a disease that will be in you when you draw your final breath. There is no going back to the way things were. You can remember the past but you cannot live there.
Apparently, Bullous Pemphigoid was latent in me. It was activated by the traumatic event of total knee replacement surgery. The early symptoms were present about two months before surgery, but they were mild in the beginning, and I had no idea how serious they would become. I had never heard of Bullous Pemphigoid. At worst, I thought that I might have scabies. My dermatologist took a biopsy from my might forearm, but no mites were visible under the microscope, so the generic diagnosis of eczema was applied, and Prednisone and steroid creams and lotions were prescribed.
About two weeks after surgery, intensely itchy, oozing sores erupted over most of my body. The itching was maddening, and the sores kept spreading. My suffering was so great that death would have been welcome. I sunk into a dark place psychologically, into my own private hell and torment that would not relent. I knew not a moment of peace. There was no hope, no way of looking forward, only a tortured existence.
During my next appointment with a dermatologist, the diagnosis of Bullous Pemphigoid was made. Another biopsy was taken, this one from my abdomen, and two sample boxes of injectable Dupixent were given for treatment of the disease. These must be kept refrigerated until about 40-minutes prior to injection. The Dr. told me Dupixent is unaffordable to his patients, but financial aid is available to those who meet the criteria. I felt considerable relief about five days after the initial loading dose, enough to make living with the disease manageable.
If my insurance approves the use of Dupixent, which they subsequently have, that is the first step toward getting a prescription through a specialty pharmacy called Accredo, which I believe is in St. Louis. The medicine will be sent directly to my mailbox in a small box packed with ice, but only if the financial aid makes it affordable.
Negotiations over my out of pocket expense are ongoing. Dr. Mitchell has sent the prescription to the pharmacy, which is being prepared for shipment. I should hear from them during the next few days, and hopefully know my share of the cost.
However things play out, the single most important fact is that the quality of my life has diminished significantly since April 6, 2026, the day of my total knee replacement. The former “me” no longer exists. Limitations have been imposed upon me by fate, which has also set back my recovery from total knee replacement.
As a result, I will spend an additional month in physical therapy in an attempt to get the maximum possible range of motion out of my knee. The greatest issue is the extreme tightness I have in my knee, despite doing the assigned stretches and exercises faithfully. The outcome is uncertain, as is my future.
The profitability of the drug manufacturer (Eli Lilly) and the insurance industry will take precedence over my health. I have no illusions about that. Millions of Americans, many of them worse off than me, share a similar fate. Under the capitalist paradigm that presides over this nation and many others, the motto is “profits over people.”
As near as I can tell, a single injection of Dupixent costs more than two thousand dollars before insurance and financial assistance. If I cannot afford the out of pocket expense, which as of this writing has yet to be determined, then I will be condemned to a life of misery and suffering until death mercifully comes. In that event, I would likely become a recluse with little to live for. Obviously I have a lot riding on this.