It is Treatment Day, but Denzel Washington is not here to show me the ropes. The nurses are always nice and friendly though, which makes the process more pleasant than it should be and takes my mind off what is to come, which is a few days of a strong headache and quite extreme tiredness. I have this once every two months, so it is manageable and makes quite an impact on my quality of life in regards to dealing with ulcerative colitis.
I have had this since I was 16, but after four years of unsuccessful medical intervention, I chose to manage it myself and for about 15 years, I did "okay" but it was not sustainable and impacted heavily on my freedom to move. So, while reluctant at first, I was offered this treatment about five years ago and it has been pretty decent. Due to the way healthcare works in Finland (and Europe in general) it is pretty much free for me also.
But, today I was offered an alternative treatment that is self-administered from home, where I pay a yearly amount and a small amount for the injection pen (similar to an insulin pen) that I inject every two weeks. While the price is more expensive, I am considering doing this, as it means that I can manage it all from home and, hopefully due to the lower but more frequent dosage, there will be more stability of supply of the drug available in my system. This would hopefully mean that the immediate side effects would be lessened, so they will not have as large impact on my life in the following days.
Percentage wise, having a headache, being tired and having foggy thinking for a week, is currently 12.5% of my existence, and depending on what I have to do during that time (for example with work), the impact of those conditions can be quite large. If I am performing at 70% of my normal, that can make a very large change in outcomes that have knock on effects down the timeline.
To visualize this, think about the 100m Sprint competition at the Olympics. In the final, performing at 70% means coming dead last, three seconds behind the winner - that is 8th position. However, there are numerous heats required to get into the final, so performing at 70% in Heat 1, means coming dead last in the competition out of 80+ runners. Quite a different outcome.
Timing matters.
Having a steady flow of experience might sound boring, but in regards to health, it can be very important. It sucks to be sick so most people will look to steady the ship, looking for predictable waters, even if they are not completely calm or ideal for sailing. For me, after being quite severely ill for over half my life, the comparative "calm" of the treatment has enabled me to expand my impact on my own life quite heavily, where things are much better, even though if juxtaposed against the average, not many people would want the conditions I endure.
Everything is relative, right? And, I am not blind to the fact that I have things pretty good considering my condition, because I do have access to the treatments and live in a place where healthcare is relatively well covered by taxes. My taxes too of course. Plus, for the quality of life difference, the associated side effects are "worth it" because the value difference I can generate being healthier, is higher than the various costs I pay in order to be healthier. In this way, it is like going to the gym - it takes time, effort and can be painful, but the benefits outweigh the inputs.
And, because of this, I am considering the "at home" option as an investment, where the initial yearly outlay would be offset by the other factors of convenience, not having to book times, miss work, schedule blood tests as precisely and of course, all of the physical implications that depending on timing, can be very costly. What I lose is having the feeling of being cared for by the nurses (they really are very good in this department) and the "forced" chance to sit for a few hours every couple of months and reflect on my own health and mortality, which I tend to do often enough anyway.
At this point before I have done more research, the pros seem to outweigh the cons and while I really don't like injecting myself, I am sure that I will get used to it soon enough and, it is only once every fortnight, not before every meal like a diabetic may have to do. The other gain in this is the "freedom factor" of taking a more active role in my own care, where I am responsible for performing tasks, not just sitting back and being told what to do and when to do it.
It looks like my mind might be made up on this, right?
There is a very high value in writing about our thoughts and even though this is very personal, discussing it in this forum means that I have to more fully evaluate the options, rather than just use my gut to make the decisions, without necessarily thinking too much.
Life is a process which is the "journey" part of experience, even though we look at the outcomes. And in my opinion, while there isn't a lot of value in what most people share on social media, there is value in sharing the personal process development that we have, because then we get a better understanding of how other people think and act and most importantly, why they think and act as they do. A selfie conveys nothing of value to me, a personal reflection can change the next decision I make and can affect the outcomes that lead into the next decision.
Is it a better experience?
Well, that is personal.
Taraz
[ Gen1: Hive ]