Stokes Sounds Off: Birthday post

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Sunday, December 18, 2016

Birthday post

Hello, all. I want to briefly bring you all up to speed on the latest developments in our lives. On Friday, I turned 30. Aside from my wife, oddly the first person to wish me happy birthday was the main pharmacist from Orem Family Pharmacy. His birthday greeting came in the form of an automated message. But I was very grateful to have even been remembered by my pharmacy on my special day. Interspersed within the happenings of the rest of the day came an overwhelming flood of birthday greetings. It was so nice to know that so many remembered. Perhaps the greatest surprises of all of these greetings came from my older sister and her husband, who, as previously mentioned, returned home unexpectedly early enough to be here for my mom's birthday on the 14th. Even while attempting to make Christmas as normal as possible for their three children in the midst of their preparation to depart shortly after the holidays for Maine, where my brother-in-law will continue to pursue his lifelong goal of being a doctor by completing his medical schooling and residency there, they took time to let me know what their new phone numbers would be and to wish me the best on my special day. I also was pleased to get a text from my former TL at ROI Solutions, wishing me well. Add that to the many people who reached out to me on Facebook, and you can imagine how I felt being the recipient of such an outpouring of love.

Aside from my birthday celebrations, such as they were, the main portion of our day was spent going to and from Salt Lake for my appointment with Dr. Weinstein (my neurologist). As we headed out, a massive snow storm hit. We had, true to form, been running much later than we had originally planned. When we were almost to Salt Lake, we realized that, because of the distance remaining and the weather conditions, we were going to be about half an hour late. As per usual protocol, I called Primary Children's Neurosurgery Department to let them know we were going to be late. Instead of just telling me that was fine and to get there as quickly and safely as possible, they instructed me to call Dr. Weinstein's assistant. I did so. She said she understood our situation and would relay the message to Dr. Weinstein, and that we should try and get there as quickly but as safely as we could. Then, a few minutes later, she called me back. She said Dr. Weinstein didn't want me to risk anything unnecessary just to keep our appointment and that we should just turn back and go home. By this time, however, we were close enough that it would have rendered the trip useless. It also didn't help that the assistant, whatever her reasons, didn't bother to explain that Dr. Weinstein had had cancellations of all her other appointments because of the bad weather, and that, had we turned back, she would have done a phone visit later on in the day. From what she did tell us, the implication was that we would simply be out of luck and out of the necessary prescriptions for a month, not to mention not having her input on the issues I wanted to discuss. So, I insisted that we were close enough that we were not turning back, and that I would do whatever was needed to ensure I could see Dr. Weinstein this month. Because I was so persistent, she relented and said she would relay to Dr. Weinstein that we were en route and almost there.

Because her assistant hadn't bothered to mention that every other appointment Dr. Weinstein had that day had been cancelled, Dr. Weinstein was ready and waiting for us. She listened carefully to my concerns, even patiently waiting while I had a meltdown right then and there about the neurological symptoms I was having. Dr. Weinstein looked me right in the eye and told me exactly what the problem was: One of the medications she had recently put me on for my nausea did work in most cases, but a select few, like me, had the same slew and litany of neurological side effects. Her recommendation was that we discontinue the use of that medication. She said she had no regrets that we had tried it, but that she was sorry to hear that it had resulted in the symptoms I had been having.

She said it was no wonder I had believed there was a problem with my shunt. The side effects from the medication I had been on were just similar enough to the indications of a shunt malfunction that it was next to impossible for me to differentiate. Amy said nothing about this during the visit, but she gave me her famous "I-told-you-so" look that she does so well for quite a while after the appointment. You see, Amy, being the inspired person that she was, found it hard to believe or accept that I was having shunt problems. She has believed all along that something that had recently changed with my medications was to blame, and, (why am I not surprised?) she was dead right in this case. My one consolation is that she thought my symptoms might have been caused by one of the many homeopathic remedies I had been using. But we both were gratified to hear that it was a prescription causing the problem. By the time I met with Dr. Weinstein, I had been without that medication for about a week, and, in retrospect, I should have internalized the fact that I had had a slight decrease in my symptoms since I was unable to get my insurance to approve the quantity and dosage of that medication.

Dr. Weinstein also indicated that it might take an additional month or two before the medication was out of my system and no longer was having an effect on me. As I was still worried about the nausea I've been having, she authorized an increase of another medication that, by comparison, made a lot more sense and will be a lot safer with much fewer possible side effects. She did say that she was not sure my insurance would give the authorization for the doubled amount of the medication she was authorizing, but said that if it became a problem, it was something that could easily be worked around.

Having been listened to and now having some resolution to the reason I've been feeling the way I had, Dr. Weinstein further told me that she understood how depressing it can be at times for us to deal with everything we have on our plates. But she said that we should not be too hard on ourselves for where we may be falling short and that we should always make sure we are only taking on as much as we can handle in life. Right now, that's not a lot. But she said that she anticipated that the changes we made would be a great help on the path to restoring my good health.

I left the clinic feeling very grateful that she was willing to even see me that day when everyone else on her schedule had cancelled. And since we had gotten some things resolved that have been amiss for far too long, I felt as though a great weight had been taken off me. At least for the remainder of the time we were at Primary's, my appetite was restored enough to allow me to fully enjoy a wonderful birthday lunch.

We then headed home, stopping off to get my weekly testosterone injection done. I received more well-wishes from the staff there. We also stopped at the pharmacy to fill the prescriptions I had received. When the staff was reminded by looking at my file that it was my birthday, they offered me a present of balloons. It was my sad duty to thank them for the kind gesture, but to let them know I was allergic. But it's the thought that counts. They gave me what they could of the one prescription they could fill that day, saying they would have the rest by Monday. Of the second prescription, they said it could be filled and delivered the next day (which was yesterday, and I was able to have that delivered then no problem). The final prescription was the one for which Dr. Weinstein had done the dosage increase. I was told two things about that one: that the insurance would not cover it until nearly the end of the month, and that they would cover 1 more tablet per day than I was previously taking, but not the doubled quantity from the prior prescription. They let me know that they thought they would be able to negotiate with the insurance and get the script filled for the quantity for which the insurance would pay without needing a new script, but they also said that it would help them if I could call in to Dr. Weinstein's assistant about this problem, just in case they needed a new script for any reason.

After all that adventure, we settled down to a quiet evening at home. As the evening wore on, I contemplated how far I've come in life. One of my earliest doctors told my parents, "Take him home, and simply love him. He will never be anything more than a limp noodle on the sofa." It has always inspired me that my parents did not listen to that advice. At various times and for various reasons, my life expectancy has been adjusted, and now my doctors are of the opinion that I am as likely to live as long as anyone else who doesn't have my same conditions might. It has also constantly and consistently sobered me to realize that, compared with most other people who have even a small part of what I have on my plate, I am one of the highest functioning individuals. I will forever be grateful to my parents for not taking that first doctor's advice. While we may have had our differences over the years, as do any parent and child, I owe a large portion of any success I've had in any undertaking I have been involved with to their support and encouragement. I know I have appreciated that fact a lot more at some times than at others.

Well, sorry for droning on about my special day, but turning 30 is a once-in-a-lifetime event. I will be following this post up right away with a look back on today milestone mark, the 6th anniversary of my marriage to Amy. In the meantime, thanks for reading this post. Any comments are welcome and appreciated.

2 comments:

  1. I have enjoyed reading this so much. You are certainly a great inspiration James with all that you endure and your sweet Amy is also such an inspiration. So glad to know that the problem of your health currently is from a medication. Praying you enjoy better health soon.

    ReplyDelete
  2. Us too. It has been an unbelievably impossible situation that could have been avoided if we had in any way been aware that that particular medication could cause these symptoms. It is getting better over time, but right now, merely the process of just waking up every day has been a challenge that has, in some ways, been next to impossible. I am not sleeping very well at all, waking is hard, and every day, the pain I have been experiencing has been enough to render me next to useless. I have been the proverbial vegetable, and on days like my mom's birthday, with my older sister's family unexpectedly surprising us by arriving in town for the celebration, and the doctor's visit on my own birthday, just the everyday getting out and socializing has absolutely drained me. It can't be easy on Amy, but she's handling it like a pro. And admittedly, I have been, for the most part, unwilling to push myself any harder than absolutely necessary. I look forward to the medication leaving my system fully and getting rid of the side effects. I am hoping with all the energy I can muster that I can summon enough strength and stamina to enjoy the Christmas celebrations with our families. Right now, it's not looking promising. But I take courage from people I know, yourself included, who have pushed past seemingly impossible odds to brighten other people's days. And so, with the prayers being offered in our behalf, we certainly are hoping for the best. Thanks for taking an interest in our lives. And thanks for reading these posts. Thanks for the recent comments in which you have expressed your well-wishes and support. We appreciate you!

    ReplyDelete

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