summer update
It has been a great summer, full of lots of up's and fewer down's. I am finding that i'm always learning something new about my illness, and that is an exciting thing to me. I'm learning that even though it takes a lot of work and determination, i can walk further every month with less difficulty. There will always be setbacks but who doesn't have setbacks in life. My eyes are more open to embracing and treasuring the small things in life, like on holidays this summer my family and i got enjoy more together like stand up paddle-boarding with all four of us participating. We were stand up paddle-boarding on Okanagan lake and there was this moment when i just stopped and looked at all us doing something together, with no worries and just happiness. That meant a lot to me, its moments like this that make the difficult parts of life with a chronic illness just fade away for the day. It is because of my life that we all have learned that we have to cherish moments like this and that life is short and everything can change when you least expect it.
After being home from Toledo for about 3 months now and on my new medications, i'm happy to say that i'm noticing a rather big change. I'm only having dystonia episodes every 5-6 weeks max instead of an average of every 2-3 weeks. My episodes are also less severe which is great !! I know that for the time being that this medication is working but I also know that things change so its best to appreciate that is helps for now ! I also just met a neurologist whom specializes in seizures, he is prettycertain i'm not having seizures but i was certain of that also. He wants to do some further testing to find out if my brain is affected in any way with my episodes or as a result of my P.O.T.S syndrome. I will be honest and say that i haven't had the best of experiences with doctors so i'm not getting my hopes up for getting results and help but it would be nice.
life doesn't have a manual or tips for getting by but take time to stop and look around at all the joy and uniqueness life has to offer. Hope everyone is well, God Bess !
-Hannah
After being home from Toledo for about 3 months now and on my new medications, i'm happy to say that i'm noticing a rather big change. I'm only having dystonia episodes every 5-6 weeks max instead of an average of every 2-3 weeks. My episodes are also less severe which is great !! I know that for the time being that this medication is working but I also know that things change so its best to appreciate that is helps for now ! I also just met a neurologist whom specializes in seizures, he is prettycertain i'm not having seizures but i was certain of that also. He wants to do some further testing to find out if my brain is affected in any way with my episodes or as a result of my P.O.T.S syndrome. I will be honest and say that i haven't had the best of experiences with doctors so i'm not getting my hopes up for getting results and help but it would be nice.
life doesn't have a manual or tips for getting by but take time to stop and look around at all the joy and uniqueness life has to offer. Hope everyone is well, God Bess !
-Hannah
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