Tuesday, 17 May 2016

Our Journey

Life has been a bit of a whirlwind lately. The flu hit our house and it hit us hard!!! Thankfully, Anna hasn't gotten it yet.....hopefully it will skip her because it is a nasty bug!!
Just writing to give a bit of an update. Anna, as always, has had her good days and bad days. Last week, many kids from her school went on a trip to Victoria for the day. Anna really wanted to go but I was super worried that she wouldn't be able to do it as they were going to be doing a march for life. Anna has difficulties walking for any extended periods of time and I had no idea how to jump through this hurdle! I want her to be involved, and want her to do as much as any other teenager, but I always want to make sure that things are safe for her to do. Luckily, we know someone who has a wheelchair and she was kind enough to lend it to Anna for the day!! YAY!!! At first, Anna was a bit hesitant about using it but soon recognized that it was necessary in order to go on the trip. The day came to go to Victoria, and Anna was so scared that people would tease her or make fun of her for being in the chair. I told her to hold her head up and sit in that chair proudly! Many people in her school know that she is sick, so of course everyone was kind, which was such a relief for her! It's bizarre that we are now at a point that she requires a wheelchair to do certain activities but we are so grateful that she still has the desire and determination to keep going. She has chosen to make alterations to her life to make sure she doesn't miss out...she is a champ!
This past weekend was awesome! Anna felt pretty good, so, in typical Anna fashion, she seized the opportunity and took full advantage of feeling half decent! Friday night she had a friend over for a visit. Saturday she went to a bbq, then we had a bbq at our house the same night, she had a friend sleep over Saturday night and then had kind of a lazy day on Sunday. I love when life feels normal; when we're just doing regular activities like any other family. These are the moments that I savour and really look forward to when days are hard.
Sunday night, things kind of went downhill. Anna went to bed fairly early. Matt and I were asleep and were woken up at 3:30 am by Anna. She was sick. Terribly sick. She crawled into our bed shaking, trembling, freezing and barely able to speak. She laid next to me while Matt went to get her gatorade. Matt went to the spare room and I just rubbed Anna's body as she tried to recover. I rubbed her legs as she held her head and moaned. This is the time that I hate; the time where I feel helpless and the time that I wish so badly that she didn't have to suffer.
Anna didn't make it to school Monday and was too sick to go today as well. I really struggle sometimes going to work knowing that I am leaving behind a very sick girl who would love to have me home. Unfortunately, we are not rich ;)  so I need to go to work and Anna completely understands that but it doesn't always make it any easier. I had a moment at work today where I shed a few tears. I'm sure exhaustion played a role in having my emotions spill over, and maybe the fact that I try and keep it together all the time, and maybe that I had a beautiful person take the time to chat with me and talk about Anna....all of those things can definitely bring a few tears to my eyes!
You know, as we walk this journey, we are learning so much and truly discovering what is important and haw valuable certain things are. We are learning to rely on each other for support and learning that, as a family, we are strong. Our two boys have been forced on this journey too, and they have done it without one complaint. As much as I wish this was not a part of our lives, it is, and we are trying to make the best of it. There may be days full of tears, pain, suffering and complete anger, but there are also plenty of days filled with spunk, spirit and life...these are what we focus on. Thank you to all of you who are on this journey with us.

Sunday, 8 May 2016

Hey! It's been a couple of weeks since my last post. Sometimes I feel like a need not to write; I can almost pretend that life is normal, pretend that all is good and pretend that what Anna is going through is a distant memory. Of course, that's not true, but sometimes living in a world of denial, even though short lived, can be refreshing!
I think one of the weirdest things about having a child with a chronic illness is that life goes on. It has to go on, but sometimes it just kind of jumps out at me like flashing neon lights. When I see other kids playing sports, or making teams, or just living and I think wow!! I took that for granted not too long ago. I used to complain about how busy we were driving here and there for different games and now I would do anything to be doing that. At the beginning of her illness, so many people asked about her and asked about us, but now it is just a part of our lives and that doesn't happen as much anymore. I sometimes wonder if people just think she's doing ok or if life goes on and we re just expected to move along with things too? I don't know? Maybe it's because when people do see her, Anna is having a really good day. If she wasn't, she would be at home in bed! I guess people don't see the down and dirty, ugly side of dysautonomia that plays such a huge part of our lives. I sometimes wonder if people think we're crazy!!! If you see Anna on her good days, she looks like a million bucks!! I know that people care...I know that they care a lot....like I said, it's just one of those weird things!
Since my last post, Anna had a drs appointment with our family physician. He suggested that we may want to consider switching the beta blocker that she is on. At the appointment, we decided to keep things as they are, but since discussing it further with Anna, I think we might go for the switch! With her current beta blocker, it will be really hard for Anna to increase her exercise...we are hoping with a new medication, maybe she will be able to be more active! In some ways, I am terrified to try something new. On the other hand though, I always have this faint hope that maybe, just maybe, something that we will try will miraculously cure her!!!
We have also decided to stop the acupuncture treatment. It was making her feel so sick and we weren't seeing enough improvement for me to keep putting her through it. It kind of felt like another roadblock; another attempt at something to try to help Anna, and another failure. I know that we can't give up though, and we will continue looking for alternate treatments!
We also discovered that Calgary has opened up a clinic for dysautonomia/POTS patients! I am super excited about this! I told our family dr about it and hopefully we will get a referral to go there!!! It would be amazing to go to a clinic where drs specialize in this and are actively researching!!!