I just realized I never officially posted anything further about my health situation since I posted the news that I might be having surgery in the near future. This post will serve to fill in all of you on the latest developments on that front.
The night before my lumbar puncture, as has been my lot more often than not lately, I did not get a lot of sleep. My alarm went off the day of the examination far too soon. We got ready as speedily as we could. Once we were on our way, I said our morning prayer. While I was in the midst of that prayer, someone brought to my wife's attention the fact that we had a very flat tire. So we pulled over and got that taken care of. Because my general health situation had never allowed it, I had never learned or been taught the art of changing a tire. Fortunately, my wife had. So in the midst of the lightly falling snow, I had to stand by and helplessly watch as she set about doing the job. We got back underway.
Even in view of that unanticipated development, we arrived at Huntsman Cancer Institute in plenty of time before my scheduled lumbar puncture. We proceeded to the 3rd floor where they checked me in. As we met with the doctor, who happened to have the same first name as one of Amy's brothers, he explained in detail what they were going to do and more about what my recovery process would be like following the procedure. All too soon, it was time to get it done. They prepared me by numbing the injection site using a medication I have been personally using for my pain issues for a while. When they inserted the needle, I hardly felt it.
All throughout the procedure, the doctor took great care to let me know what he was doing and why he was doing it. While that was going on, we made small talk. I was delighted to discover that those who were working on me knew my neurologist, at least by reputation if not by name. They made sure to make my comfort and ease their top priority. Much to my surprise, the procedure was over in no time. They ushered me into the hall to be with my wife, letting me know that they would have me lying down for about half an hour afterwards just in case. I dozed off and on and during the times I was coherent enough, I talked to Amy about how the procedure had gone. The half hour ended and they helped me to my feet, telling me to be careful and to take it easy as much as possible over the next few days following.
We left Huntsman and drove around town, finding a new place to eat, where we had a most delicious lunch. All too soon, the time arrived for my follow-up appointment with my neurosurgeon's nurse. She was delighted to tell us that there appeared to be no obvious issues with the functionality or pressure of my shunt. But that left us with the slew of still unexplained symptoms. She took down a list of those symptoms and left us with the suggestion and advice that we should follow up with eveyr doctor and specialist that we can to determine what else might possibly be to blame for the extensive symnptoms I have been having. We drove home amidst more snow.
I spent the next couple of days mostly lying down and not able to do much. While I experienced an initial improvement of my neurological symptoms for the first couple of days after the lumbar puncture, ever since then, my symptoms have intensified beyond belief. And the most frustrating thing about the whole situation is that, while my neurosurgeon's office and my neurologist had both said to let them know about any post-procedural symptoms, which could appropriately be treated with additional medication above and beyond what I take daily, my neurosurgeon's office refused point-blank to call anything in for me. This wasn't surprising in light of my assertion before the procedure that I would get any additional medication that might be needed post-exam from my neurologist. But when I called my neurologist's assistant to let her know that I needed that additional medication, she refused point-blank to even take the matter to my neurologist. This has been an ongoing issue I have run into in regards to my contact with my neurologist's assistant. Due to the politics and procedures involved with the arrangement by which I see my neurologist once a month at her clinic at Primary Children's Medical Center, I have for a while now had trouble getting medication I needed from my neurologist between visits with her. This is primarily due to the fact that her assistant has been told to parrot the excuse that no medication changes or dosage alterations would be taken care of between visits.
As the pain continued, I repeatedly contacted my neurosurgeon's nurse with a petition for help and relief. I have wondered since the procedure if I may need an adjustment to the setting of my shunt. But without fail, each time I have called my neurosurgeon's nurse to request such an adjustment, I have been told that my neurosurgeon will not authorize that, and will not even see me again unless and until he is convinced I am having a problem. I finally got so frustrated that, when leaving a message for my neurosurgeon's nurse about a week ago, I had a meltdown. This seemed to do some good. In further contact with that nurse, she has said she is sorry for my pain, but that it is the neurosurgeon's expressed intent and desire to not see me or do anything about my situation unless and until he feels there is a problem. She said if it were up to her, she'd be happy to do something for me, but her hands are tied by virtue of her being at the mercy of his decisions. She did say that, if the pain got to be too unbearable, I could go to the ER or the urgent care clinic. I had my wife take me to urgent care this last Saturday, having before been too ill to even get there before then.
In the interim, I scheduled an appointment to follow up with my PCP on Monday about my symptoms. We went to that appointment, and as I shared what I had been experiencing physically, I had yet another emotional meltdown. He ran a blood test to check the levels of a few things that may account for the issues I've been having. He also gave me prescriptions that I needed for roughly a week's supply of medication that I had not been able to get from my neurologist. But in view of what my insurance covers, we had to pay a ridiculously large amount of money for just one of these prescriptions. The other two will be covered by my insurance on Friday or Saturday. And fortunately enough, we have our next appointment with my neurologist on Friday, which is, coincidentally, my 30th birthday. I have another slew of issues to discuss during that visit. Among them will be some possible dosage adjustments and changes we can make to what I'm taking. And I will be sure to discuss with her once again the attitude of her assistant in not even approaching her about the care and medication I needed directly as a result of the lumbar puncture. She had told me to let her know if any additional medications were needed after the procedure, but my efforts have once again been thwarted by her assistant.
In the meantime, I have spoken with my gastroenterologist, and her recommendation, at least as far as my intestinal symptoms and complaints go, is to have yet another endoscopy done. Since I spoke to her about that last week, I had hoped to have that scheduled by now, but for whatever the reason, it has not been.
I also spoke yet again yesterday (Tuesday) to my neurosurgeon's nurse. She reiterated her personal sympathy with my plight and her desire to do something for me, but again stated that my neurosurgeon would not see me until he himself is convinced I am having a problem. Her advice was to see if I could get a second opinion on that. The main problem I have with that idea is that my insurance only covers neurosurgeons that are within the same network as my current one. And there is a no-exceptions unbreakable policy in place to the effect that if you start out seeing one neurosurgeon within that network, you are bound to see them for the remainder of the time you have that insurance coverage.
I do have one small glimmer of hope. Last week, I was able to speak to my care management nurse. I had another major meltdown as I explained to her what I had been going through due to the thoughtless conduct of my neurosurgeon and my neurologist's assistant. She promised to do whatever she could on her end of things to assist me with my concerns. With her being my advocate and chief representative in this matter, I am hoping for the best possible resolution.
The really awful thing about my whole situation is that, with the neurological symptoms I am still dealing with almost two weeks after the lumbar puncture, my strength and energy, and consequently my ability to go and do things, and even to live my everyday life, has been severely limited. I hope for the best, but am finding my situation ever more discouraging and disheartening.
With all that has been going on just with my health, which is only compacted and complicated by the fact that my wife's health is also not good and that no one has been able to dig deeply enough to find out what has been going on with her condition during the entirety of our marriage, we have not been able to attend Church for weeks. In consideration of our health, and in view of how spotty our Church attendance has been in the last little while, we were released from our calling as Primary teachers weeks ago. My home teachers were kind enough to bring us the sacrament the Sunday prior to my lumbar puncture. The one time we were able to attend Church several weeks ago, we barely got through receiving the Sacrament before I felt too ill to stay any longer and we had to go home. We have not been able to go to the temple in far longer than I care to admit. I am just hoping we can feel well enough to be able to get our temple recommends renewed on both the ward and stake levels next week, because they expire at the end of this month.
I hope that this post has served to sufficiently explain our situation. I would appreciate and welcome any and all prayers in our behalf. The one silver lining about all this is that I have not felt too ill in the midst of all that is going on to regularly post here on this blog, especially in light of all the wonderful developments and news that are taking place in regards to the Church in general and temple developments in particular.
The other really unfortunate thing about our seemingly hopeless and increasingly more complicated situation is that some well-meaning people have judged us as being indolent leeches off the government, and especially those who believe and love to assert that no matter how ill we have been, we are not doing nearly enough for ourselves. The judgments of people have been especially harsh towards my sweet wife, Amy. Those well-meaning people, including some among our own families, believe and assert that because I am unable to work for our maintenance, Amy should. There have been many who insist that no matter how much we are struggling, we are not doing nearly enough, and they constantly suggest things they think we should be doing with our time. They underplay, overlook, or outright ignore what we have to deal with, and insist on things they think we should be pursuing with our time and energy. I have, especially lately, found myself having to vigorously defend my wife from such personal and hurtful judgments. And it sickens me and offends me to my core. What any or all of these people fail to realize is that we are doing the best we can. We do not live in poverty on the very minimum the government can give us because we like it. Nor are we wasting away our time and resources because it's more fun or more convenient that way. We are doing the very best we can with all we have to deal with.
There is nothing that would make me happier than to be able to get our health sorted out and to be able to return to full activity and participation in the Church. Once we can get to the point where our health situations have been sufficiently resolved, I am determined to resume working to support us, whether I am able to do so outside the home (which would be preferable to Amy, who often gets sick of having me around so much) or whether I can turn my full energy to writing for a living. If we can ever get to the point where our resources are sufficient to adequately cover our needs, it will be wonderful.
Thanks to you all for your continued interest and support.
