The lovely Rhianne asked me to sub for her and I gladly said I would. I almost didn't as I am absolutely exhausted, but I really appreciate the opportunity to be involved in this blog. This is my fifth week back at work and it has been a bit of a roller coaster ride. Last week was a shocker of a week, but I am hoping that this week will be better. I haven't started work on my course, mainly because they haven't sorted out my log in details, but also because I have been flat out. Between work, family stuff, the occasional catch up with a friend, medical appointments and organising things for my upcoming trip (particularly medications) I have been extremely busy.
Work has been keeping me pretty busy too with home visits and they are usually in the afternoon/evening so I have been getting home a bit later than hoped some nights. Regardless of what time I get home, I am exhausted each night after work. I have been pretty bad as a result though with keeping up with my exercise routine. The other reason I have been particularly bad with keeping up with my exercise routine though is a lack of energy due to low food and fluid intake. The low food and fluid intake has been one of the reasons things were particularly bad last week. My nausea levels have been intense and I have had zero appetite.
I saw a new Gastroenterologist recently and he had no interest whatsoever in what is causing my nausea and vomiting and didn't take much of a history. The only option he gave me was to follow up on a medication known as Cisapride. It has been pulled off the market in the US due to cardiac risks and a few sudden deaths that occured. It is available where I am in Australia, but only under a special access scheme with government approval. The gastroenterologist won't organise it though unless my cardiologist clears it, I haven't spoken to my cardiologist about it.
I was reluctant to consider it as an option given my vomiting had improved but then not being able to eat and drink much can't be good either. It's a bit of a catch 22 situation. I am in no rush to make a decision though. I will talk to my cardiologist about it at my appointment on Friday and if he clears it, follow it up after my trip. The last time I saw my cardiologist, he put me on a medication known as Ivabradine. It lowers the heart rate without lowering your blood pressure. I think it has really helped me in terms of my vomiting, I am not sure how that works (as it doesn't really makes sense) but usually with how minimal my fluid intake has been, my vomiting would have been much more intense by now.
My vomiting hasn't stopped, but it's only 2-3 times a week now compared to what it used to be. Given, I landed myself in hospital just before the medication due to my fluid and salt levels dropping, the Ivabradine is the only explanation for why the vomiting is as good as what it is. Anyway, I better move on to the questions as I have rambled on a bit more than I planned on.
Rhianne's question:
I definitely try to look at my health holistically, I just wish sometimes that Drs would look at things more holistically. They seem to be so caught up in their own specialties and don't look at things from an overall perspective. Even if they could look at the physical and emotional side of things a bit more holistically as a starting point it would be good. Half the time, they don't even look at the physical side of things from an overall perspective and just focus on their own speciality and don't know how to look outside the box at all.
Cheyanne's question:
I don't really have a preferred exercise, but I do have a prescribed routine from an exercise physiologist that incorporates a pilates floor routine (using a resistance band for most exercises) and recumbent bike pedals. The floor exercises really hurt my hips. I would rather be playing a sport like badminton but just not able to with POTS. I like to swim but just don't have the time and energy to do so very often. I will stick with my prescribed routine for now but with my energy levels lately, I haven't been able to keep up with it like I should.
Emily's question:
Brain fog is something I always used to claim didn't happen for me but I think I was in denial about that one. Sometimes I can forget what I was saying or have a bit of difficulty concentrating. I tend to write lists to remember things. I always was a list person though and with my work in particular I have to juggle several tasks. It's hard to really say how bad it is, it probably varies.
Welcome to the blog by the way!
Take Care everyone
Michelle K
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