It's not always an accurate description when you compare one year to the next. For instance, 2015 was much better than 2014 when it comes to general energy and amount of vomiting. In 2015 doctors were able to get me on some effective anti-nausea medication that has kept the vomiting down, and I have been able to work around it. I still cannot have a shower without vomiting, but I can have a bath, so I have avoided showers for the most part. Moving too quickly had previously induced vomiting, so I have avoided walking too quickly in 2015.
With anti-nausea medication and avoiding certain activities, I have been able to keep the vomiting to a minimum. So, in general, I'd say that 2015 was a better year than last year... but is it really? I still can't have a shower without vomiting and I still can't do stairs without being completely worn out to the point of feeling faint.... but is avoidance really the best way to feel 'better'?
My energy levels are much better than last year.
In 2014 I was dealing with a surprise over-active thyroid, which zapped my energy levels. 2015 included more activities and more date nights, which made a huge difference in my quality of life.
In 2015 I also found ways to work around severe abdominal angioedemic episodes. That is not to say that I had none, but the ones that I did experience were sometimes milder and we found ways to get them under control in fewer hours - so I have not had to endure the dreaded emergency room. I was lucky that the days I experienced severe episodes I had company to help relax me and calm things down.
As far as the topic of surgery goes, 2015 seemed to be my year. The planning had started and the appointments were scheduled with all of the necessary surgeons.... but a surprise kibosh on the plan occurred late in the year and now it looks like I will be looking for a new team starting in 2016. Maybe this next year will be my year. 2016 will be 10 years since the first surgeon told me that I was too young. I wonder if 10 years of suffering and continuously worsening symptoms will be enough for them to reconsider claiming my age as a deterrent? I guess we will have to wait and find out.
The other comparison that I try NOT to think about is how different I feel compared to just about 4 years ago. When I was able to work. And play sports. And have a routine and a schedule that I could keep. When I could jump at any musical or athletic opportunity. When I could plan date nights and basically do whatever I wanted, only plagued by Crohn's flares and the odd puking fit when things got overly exciting or stressful. Nausea was not nearly as much of a problem, neither was the arthritis, and it seemed (now) as though I had unlimited energy back then.
As far as my social life is concerned, 2015 was much better than 2014. I could actually go out for dinner or go to a movie at the theater and still be okay. I managed to get out a little bit more without more than a week's fall-out afterwards.
The biggest question is - am I better? Or have I become much better at coping and handling this 'new normal'?
Apart from the resolved thyroid issue, I'm not all that sure. I think that there are aspects of both. I think that, in some ways, my situation has improved... but in other ways, I have simply been able to avoid triggers and learn how to work around my limitations.
I am grateful that I can attend the odd yoga class, or go out and see a band play, or go and watch a movie, without having to take a week or two to recuperate. That is a great feeling. And in all honesty, this Christmas was the BEST one I have had in years. I was actually able to eat and enjoy all of the treats that Christmas brings, without ending up in tears in the washroom from pain.
So here are my biggest limitations that I would like to figure out in 2016.
I would like to figure out why stairs are so difficult, and maybe improve that portion. I would like to find out how to be able to enjoy having a shower again without vomiting. There are some other personal issues that I would like resolved - although surgery was supposedly the last resort, so without surgery I don't know what kind of options I might have - and I would really love to get back into a bit of a yoga class routine and maybe get a few more singing opportunities.
But overall, I am extremely grateful for 2015. Finding my one and only, plus managing to avoid the Emergency Room all year, getting my thyroid back under control, and gaining some extremely important physician referrals onto my case.
So now the biggest question is:
Is this my 'new normal' for which I simply have to accept?
Or are these symptoms temporary - for which my physicians will find some future effective treatments?
If this truly is my 'new normal', then I will be looking at getting a power wheelchair in 2016. I want to be able to go to and enjoy a hockey game or a football game, and my biggest obstacle is the walking and all of the stairs to GET to the seats at the stadium. If I have a wheelchair, then that will take care of walking, so then I could sit there for about half of a game with no trouble. Getting there is the problem... but once I'm there, it would be like watching a movie - which I have finally been able to do a few times this year.
2015 was my year in many ways. Maybe 2016 will be my year in other ways! Fingers crossed!
With anti-nausea medication and avoiding certain activities, I have been able to keep the vomiting to a minimum. So, in general, I'd say that 2015 was a better year than last year... but is it really? I still can't have a shower without vomiting and I still can't do stairs without being completely worn out to the point of feeling faint.... but is avoidance really the best way to feel 'better'?
My energy levels are much better than last year.
In 2014 I was dealing with a surprise over-active thyroid, which zapped my energy levels. 2015 included more activities and more date nights, which made a huge difference in my quality of life.
In 2015 I also found ways to work around severe abdominal angioedemic episodes. That is not to say that I had none, but the ones that I did experience were sometimes milder and we found ways to get them under control in fewer hours - so I have not had to endure the dreaded emergency room. I was lucky that the days I experienced severe episodes I had company to help relax me and calm things down.
As far as the topic of surgery goes, 2015 seemed to be my year. The planning had started and the appointments were scheduled with all of the necessary surgeons.... but a surprise kibosh on the plan occurred late in the year and now it looks like I will be looking for a new team starting in 2016. Maybe this next year will be my year. 2016 will be 10 years since the first surgeon told me that I was too young. I wonder if 10 years of suffering and continuously worsening symptoms will be enough for them to reconsider claiming my age as a deterrent? I guess we will have to wait and find out.
The other comparison that I try NOT to think about is how different I feel compared to just about 4 years ago. When I was able to work. And play sports. And have a routine and a schedule that I could keep. When I could jump at any musical or athletic opportunity. When I could plan date nights and basically do whatever I wanted, only plagued by Crohn's flares and the odd puking fit when things got overly exciting or stressful. Nausea was not nearly as much of a problem, neither was the arthritis, and it seemed (now) as though I had unlimited energy back then.
As far as my social life is concerned, 2015 was much better than 2014. I could actually go out for dinner or go to a movie at the theater and still be okay. I managed to get out a little bit more without more than a week's fall-out afterwards.
The biggest question is - am I better? Or have I become much better at coping and handling this 'new normal'?
Apart from the resolved thyroid issue, I'm not all that sure. I think that there are aspects of both. I think that, in some ways, my situation has improved... but in other ways, I have simply been able to avoid triggers and learn how to work around my limitations.
I am grateful that I can attend the odd yoga class, or go out and see a band play, or go and watch a movie, without having to take a week or two to recuperate. That is a great feeling. And in all honesty, this Christmas was the BEST one I have had in years. I was actually able to eat and enjoy all of the treats that Christmas brings, without ending up in tears in the washroom from pain.
So here are my biggest limitations that I would like to figure out in 2016.
I would like to figure out why stairs are so difficult, and maybe improve that portion. I would like to find out how to be able to enjoy having a shower again without vomiting. There are some other personal issues that I would like resolved - although surgery was supposedly the last resort, so without surgery I don't know what kind of options I might have - and I would really love to get back into a bit of a yoga class routine and maybe get a few more singing opportunities.
But overall, I am extremely grateful for 2015. Finding my one and only, plus managing to avoid the Emergency Room all year, getting my thyroid back under control, and gaining some extremely important physician referrals onto my case.
So now the biggest question is:
Is this my 'new normal' for which I simply have to accept?
Or are these symptoms temporary - for which my physicians will find some future effective treatments?
If this truly is my 'new normal', then I will be looking at getting a power wheelchair in 2016. I want to be able to go to and enjoy a hockey game or a football game, and my biggest obstacle is the walking and all of the stairs to GET to the seats at the stadium. If I have a wheelchair, then that will take care of walking, so then I could sit there for about half of a game with no trouble. Getting there is the problem... but once I'm there, it would be like watching a movie - which I have finally been able to do a few times this year.
2015 was my year in many ways. Maybe 2016 will be my year in other ways! Fingers crossed!