A year ago we were up in Rochester celebrating our son Richard’s wedding to his bride Noelle. What an amazing day full of love and laughter with friends and family that had travelled for the occasion! A reading during the ceremony was from the novel “The Princess Bride: S. Morgenstern’s Classic Tale of True Love and High Adventure” by William Goldman. The passage spoke of the discovery of their love.
Westley said to Buttercup, ““Do I love you? My God, if your love were a grain of sand, mine would be a universe of beaches…I’ve been saying it so long to you, you just wouldn’t listen. Every time you said ‘Farm Boy do this’ you thought I was answering ‘As you wish’ but that’s only because you were hearing wrong. ‘I love you’ was what it was, but you never heard.”
The book and movie have always been family favorites. At the bookstore I worked in, Mandy Patinkin was participating in an event and our son, Richard, now the recent groom, was nearly run through with a pen while Mandy sneered at him in his Spaniard’s accent, “Hello, my name is Inigo Montoya. You killed my father, prepare to die!” The entire store roared with approval. I think Richard needed to change his pants.
Last month, during a rather nasty bout of food poisoning, I was so exhausted I gave up any pretense of being a caregiver and demanded some care for me. Since I kept losing anything I had tried to eat, my demands were really quite pitifully relayed.
Despite our rather messy conversation, Rich took our plan to heart and tried his best to get out of patient mode. He once again started taking care of small tasks around the house and running short errands locally. How wonderful to see him busy and how comforting to have my partner in crime back! Suddenly all I had to do was request something and he would reply as I have to him, “As you wish.”
But as we’re getting to the end of our prednisone dosages, we’re finding some side effects that were well hidden by this bane. Who knew that this medication that has given us so much grief and discomfort also protected Rich from other debilitating effects?
We’re now down to 5mg of prednisone every other day and within two weeks we’ll be off completely. Each time the dosage drops, there are the typical withdrawal symptoms which in so many ways, we’ve gotten used to. Usually just a few days and we’re past that hurdle ‘til the next dosage change. The past couple of weeks, though, we found it was worse. Our fear was, as the dose dropped so low, that Rich was undergoing an adrenal failure.
When you are on prednisone for the long haul, it shuts off your adrenals since your body is getting what it needs from the medication. If you don’t wean off properly, you don’t give those glands a chance to kickstart themselves back up you end up with Addison’s Disease and you can find yourself on prednisone for life. So we’re REALLY careful to take our time, much as we do get impatient with this nonsense.
When the bone and muscle aches started up, when the nausea and the feeling of disconnectedness come into play, when balance and coordination were once more an issue, when mind-numbing fatigue hit, we were concerned. Not only that we might be looking at adrenal failure, but that there was very little quality of life. Plans made were canceled or postponed as Rich spent his days ensconced in his chair of power… and although the recliner is mighty comfy, it’s not one’s life ambition to be there 24/7. It was once again my turn to say “As you wish” while Rich went through his own personal Pit of Despair. We’ve been here before on this journey… we can find our way out. With or without Fezzik.
All of this also meant we needed to do what we’ve been doing… Research…. Collect data… Look for a solution instead of only presenting the problem. Some mornings, Rich would wake up feeling quite well, in the relative scheme of things. And then it would suddenly go all wrong. We tracked and stalked, like Inigo Montoya after the Six Fingered Man. And, like him, we found our nemesis and were ready to say to it, prepare to die.
There are only two medications that he takes that could be the culprit. In this case, we reasoned, it can’t be the prednisone because, if it were adrenal failure, he would feel better after the small dose he’s on now… it would give him the needed boost. So, 6am and 6pm…. Two medications… voriconazole and acyclovir… both have the side effects that he’s experiencing. But only one is specifically only those times. The other has a noon dose. Can we come off this medication? Will it make a difference? Can we restore something closer to our accepted new normal?
Vizzini: “Inconceivable!” Inigo: “You keep using that word. I do not think it means what you think it means.”
Thankfully, not so inconceivable. With our prep work in hand, a quick call to the doctor and a review of symptoms, timing and reactions, we were able to remove voriconazole, the anti- fungal medication, from our roster of pills. It took a couple of days for the residual dose to clear outta town, but thankfully, the disconnected feeling and the general malaise is a thing of the past. The aches and pains remain and we’re hoping acupuncture will help clear those out. We know that is partially from the acyclovir but we have no choice but to hold onto that drug for now. It protects from viruses and specifically targets chicken pox and shingles. Until Rich can get all his childhood immunizations again, we’re stuck with this one.
Valerie: “The chocolate coating makes it go down easier. But you have to wait fifteen minutes for full potency. And you shouldn’t go in swimming after, for at least, what?” Miracle Max: “An hour?” Valerie: “Yeah, an hour.” …Valerie: “Think it’ll work? “ Miracle Max: “It would take a miracle. “
Our miracles continue and now we’re so close to the next milestone of saying goodbye to prednisone. That will certainly be a day to celebrate! We know it will take considerable time for us to see the changes in sleep patterns, neuropathy, belly bloat, moon face, dizziness… the list goes on and on. It’s been over a year on fluctuating doses so only time will tell how long it will take, but each day will be a gift of renewal. We’ll still have meds and their effects, no longer masked by prednisone, but with just two short months to Rich’s new birthday, we can honestly say, we’re close to storming the castle.
A Classic Tale of True Love and High Adventure?
As you wish.