Focus Back on My Own Health
I had another medical appointment yesterday for my own health issues... some bloodwork... some shots... some discussions and advice... and now being referred to some of my usual specialists and one new specialist.
When I got back home from my appointment, I was looking over my notes and a little bit of paperwork they sent home with me... I have to say that it is a bit disconcerting to come home from a medical appointment with paperwork spread across your coffee table and one of the documents is for an "Advanced Directive for Health Care". That being said, I have a feeling that quite a few patients are being sent home with this paperwork today. I hope so, anyway. Then again, my health is rather poor and it is in appointments such as this when just how poor my health truly is becomes a bit more obvious.
I left this long appointment with three more appointments. My experience with scheduling specialist appointments is that these appointments won't be behind me until we are well into autumn. The appointments are being arranged as I write this and history has proven that it can take months to get into a specialist's schedule. So it is not like I have to jump right into a hectic medical schedule. Although, I don't have the appointments just yet so time will tell.
I guess the most troubling thing to come out of this appointment is about something I had thought was just a recurring heat rash on my head. After a number of bouts with skin cancer on my face in the past 15 years and the subsequent treatments... one bout with cancer was a much more involved surgery to remove the cancer which had grown deep within my cheek... I now always wear a hat whenever I'm outdoors. Lately however, whenever I wear a hat while doing some yardwork, I get what I thought was a nasty heat rash around my head where the band of the hat is located. Apparently, this is more cancer, widespread cancer, rather angry cancer, which needs to be addressed again. I'm not really looking forward to these appointments because I've already been told that the type of treatment for this widespread cancer can be a bit brutal. With widespread cancer such as this, it doesn't get treated in the usual way. Instead, they burn your skin with a type of acid wash and peel it away, with the cancer, over the course of weeks. It is a bit painful and it certainly isn't pretty. The last time we visited this specialist she was reluctant to treat any of the cancer because there was so much of it but it wasn't terrible yet and, instead, said, "Let's wait and see." She felt it wasn't time to do this particular treatment. It is definitely worse than it was back then so we'll see how it goes.
Since I've been doing a lot of spring yardwork in between visits to Ellie at the hospital, my spinal injuries are screaming at me too. The pain, at times, stops me dead in my tracks or almost drops me to the floor, wincing in pain, seeing like sparkles in my eyes, and just trying to breath (very much like the weeks following my initial line-of-duty spinal injury). The constant pain is brutal and radiating into my groin, hips and the area of my kidneys. At times, points higher up on my spine are also painful which causes pain all across my back and makes it very difficult to even breath. Unfortunately, not much can be done with these spinal injuries because they are so extensive (I've already seen a team of neurosurgeons). At this point, all that can be done is daily physical therapy (20 years of this now) and active pain management techniques. On the positive side, it is still rare when I resort to using my cane and I am not yet in a wheelchair... although I do occasionally need a cane and have seriously thought about a wheelchair for some occasions.
Another surprise to come out of this appointment (that's a bit of sarcasm... it is no surprise)... my blood pressure is a bit high and I seem to have constant mild tachycardia (although far less severe than a few months ago). When I reminded my doctor of our past ten months spent at the hospital starting with Sheila's latest cancer, then a few other issues, a funeral, and then lately with our granddaughter in the PICU... oh, and the fact that both Sheila and I are truly sick and tired of medical appointments, doctors and hospitals... our stomachs turn the moment we smell these medical facilities... my doctor just sort of chuckled and said, "Yeah, I forgot about all that... that could do it! You guys really do need a break." So, we added some relatively minor diet changes and put more emphasis on the above mentioned pain management techniques which go hand-in-hand with stress management techniques. Additionally, whenever I am in a warm environment, my health begins to fail... causing tachycardia, flushing, etc... and this examining room was so hot that my doctor resorted to opening the window... at this point, my shirt was soaked in sweat so I know tachycardia would be normal for anyone feeling overheated. Regardless, I have a followup appointment in a month to check up on the blood pressure and tachycardia.
I have another specialist appointment coming my way which is related to my Systemic Mastocytosis too. I needed to coordinate this with my primary care doctor so we discussed this yesterday. This one is a bit invasive and has proven to be problematic for Systemic Mastocytosis patients so this is a procedure I'm not too happy about attempting again. We attempted this procedure a few years ago but the doctor and I canceled it because my overall health wasn't able to handle it. We'll try it one more time... but, I also warned that if my health can't handle it again, I will never go down this road again.
We also discussed my medications... she agreed with some of the recent adjustment to my medications and she is also addressing a problem with my mail-order pharmacy. This pharmacy is again trying to charge me $34,000/year for just one of my drugs. (Well, it is really probably my insurance company that is causing the problems but the pharmacy is attempting to handle it.) Unfortunately, $34,000/year isn't an option, yet, I probably would not be alive today without this drug and that is no exaggeration. Hopefully, this problem will be resolved very quickly since I am running out of this medication.
So, here we go again... I guess it is now my turn to be the patient.
When I got back home from my appointment, I was looking over my notes and a little bit of paperwork they sent home with me... I have to say that it is a bit disconcerting to come home from a medical appointment with paperwork spread across your coffee table and one of the documents is for an "Advanced Directive for Health Care". That being said, I have a feeling that quite a few patients are being sent home with this paperwork today. I hope so, anyway. Then again, my health is rather poor and it is in appointments such as this when just how poor my health truly is becomes a bit more obvious.
I left this long appointment with three more appointments. My experience with scheduling specialist appointments is that these appointments won't be behind me until we are well into autumn. The appointments are being arranged as I write this and history has proven that it can take months to get into a specialist's schedule. So it is not like I have to jump right into a hectic medical schedule. Although, I don't have the appointments just yet so time will tell.
I guess the most troubling thing to come out of this appointment is about something I had thought was just a recurring heat rash on my head. After a number of bouts with skin cancer on my face in the past 15 years and the subsequent treatments... one bout with cancer was a much more involved surgery to remove the cancer which had grown deep within my cheek... I now always wear a hat whenever I'm outdoors. Lately however, whenever I wear a hat while doing some yardwork, I get what I thought was a nasty heat rash around my head where the band of the hat is located. Apparently, this is more cancer, widespread cancer, rather angry cancer, which needs to be addressed again. I'm not really looking forward to these appointments because I've already been told that the type of treatment for this widespread cancer can be a bit brutal. With widespread cancer such as this, it doesn't get treated in the usual way. Instead, they burn your skin with a type of acid wash and peel it away, with the cancer, over the course of weeks. It is a bit painful and it certainly isn't pretty. The last time we visited this specialist she was reluctant to treat any of the cancer because there was so much of it but it wasn't terrible yet and, instead, said, "Let's wait and see." She felt it wasn't time to do this particular treatment. It is definitely worse than it was back then so we'll see how it goes.
Since I've been doing a lot of spring yardwork in between visits to Ellie at the hospital, my spinal injuries are screaming at me too. The pain, at times, stops me dead in my tracks or almost drops me to the floor, wincing in pain, seeing like sparkles in my eyes, and just trying to breath (very much like the weeks following my initial line-of-duty spinal injury). The constant pain is brutal and radiating into my groin, hips and the area of my kidneys. At times, points higher up on my spine are also painful which causes pain all across my back and makes it very difficult to even breath. Unfortunately, not much can be done with these spinal injuries because they are so extensive (I've already seen a team of neurosurgeons). At this point, all that can be done is daily physical therapy (20 years of this now) and active pain management techniques. On the positive side, it is still rare when I resort to using my cane and I am not yet in a wheelchair... although I do occasionally need a cane and have seriously thought about a wheelchair for some occasions.
Another surprise to come out of this appointment (that's a bit of sarcasm... it is no surprise)... my blood pressure is a bit high and I seem to have constant mild tachycardia (although far less severe than a few months ago). When I reminded my doctor of our past ten months spent at the hospital starting with Sheila's latest cancer, then a few other issues, a funeral, and then lately with our granddaughter in the PICU... oh, and the fact that both Sheila and I are truly sick and tired of medical appointments, doctors and hospitals... our stomachs turn the moment we smell these medical facilities... my doctor just sort of chuckled and said, "Yeah, I forgot about all that... that could do it! You guys really do need a break." So, we added some relatively minor diet changes and put more emphasis on the above mentioned pain management techniques which go hand-in-hand with stress management techniques. Additionally, whenever I am in a warm environment, my health begins to fail... causing tachycardia, flushing, etc... and this examining room was so hot that my doctor resorted to opening the window... at this point, my shirt was soaked in sweat so I know tachycardia would be normal for anyone feeling overheated. Regardless, I have a followup appointment in a month to check up on the blood pressure and tachycardia.
I have another specialist appointment coming my way which is related to my Systemic Mastocytosis too. I needed to coordinate this with my primary care doctor so we discussed this yesterday. This one is a bit invasive and has proven to be problematic for Systemic Mastocytosis patients so this is a procedure I'm not too happy about attempting again. We attempted this procedure a few years ago but the doctor and I canceled it because my overall health wasn't able to handle it. We'll try it one more time... but, I also warned that if my health can't handle it again, I will never go down this road again.
We also discussed my medications... she agreed with some of the recent adjustment to my medications and she is also addressing a problem with my mail-order pharmacy. This pharmacy is again trying to charge me $34,000/year for just one of my drugs. (Well, it is really probably my insurance company that is causing the problems but the pharmacy is attempting to handle it.) Unfortunately, $34,000/year isn't an option, yet, I probably would not be alive today without this drug and that is no exaggeration. Hopefully, this problem will be resolved very quickly since I am running out of this medication.
So, here we go again... I guess it is now my turn to be the patient.
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