It's been a couple of weeks since I've updated this blog and even though it's Wednesday (when I normally post on Tuesday), I had some time today to sit down and write an update. It's been a whirlwind two weeks. My youngest brother got married on April 24 and there were a ton of exciting things to go to, prepare for and be involved in. His wedding was magical and spectacular. I was completely humbled and blessed to be a bridesmaid. His bride, Erin, didn't have to include me and yet she did and my heart was filled with joy. I was bound and determined to walk down that aisle with no help (no walker, no cane, no one helping me). I was so determined that I think I got into my head a little too much and over-analyzed and over-thought walking. While I didn't fall, I was definitely having issues. Because of these issues, the morning of the wedding, there was a modification made to get me down the aisle. I didn't want to ruin the wedding for my brother and sister-in-law, but my brother assures me that he and Erin discussed it and they wanted it the way it played out. So, I took a few steps down the aisle, looked straight at my brother (the groom) and he made his way down the aisle, gave me his arm and escorted me to my place in the line-up of bridesmaids (I was the first one walking in). I was slightly embarrassed that I had to have help, but I tried not to focus on that. I didn't look at a soul in the audience until I was in the line-up, so as not to get even more nervous. It ended up being a special, sweet moment in time with my brother that I will cherish forever. I will be forever grateful to Steven and Erin for helping me "fit in".
Now while I couldn't walk down the aisle without help, I did "dance" at the reception - haha. I put dance in quotes because I can't dance at all. I hardly moved my feet the whole night, but I was on the dance floor the entire night and moved my body - so much so that the next morning I felt muscles I haven't felt in awhile. I had a blast at the reception. I made my mind up to "dance like no one is watching" and I had so much fun. Also, there were NO slow songs played (except the mother/son dance), so I moved all night long. If I ever get married, I think I'll take a page from Steven and Erin's book and only have fast, fun songs played at the reception.
Since the wedding, I've been struggling. I may have to fool with my deep brain stimulation settings again. I haven't been steady on my feet at all. I was incredibly blessed to have NOT fallen at all during any of the wedding festivities, but the Monday after, I fell. Maybe I just needed to get it out of my system?! ;) I've also been having spasms in my leg and foot again. Those are mostly at night (and either wake me up or keep me up), but they've showed up during the day too while I'm trying to walk. I just don't really know what to do. This is the part I don't like - not knowing exactly what to do. It's always an experiment. Should I go up with the electricity? Should I go down with the electricity? Should I leave it alone? Should I go to a different setting? I've also been relying on my cane more and more. I hate that. I feel like I'm letting myself down. I feel like I'm letting my doctors down. I feel as though I'm taking the easy way out using the cane. I know I shouldn't feel that way, but for the time being, I'm letting myself feel that way. I let myself wonder if I'll ever be able to walk without the cane again. If you can't tell, I tend to catastrophize things - like "woe is me". I see things in black and white. I need to calm down and (literally and figuratively) put one foot in front of the other and not worry so much. I know I will walk without the cane again because I've done it before. I didn't want to play around with any of my DBS settings before the wedding so as not to make things worse than they were, but now it may be time to experiment again.
I got a call from my neurologists' office the other day and they were calling people who have had deep brain stimulation surgery and surveying us on the process. It seems (if I heard/remember correctly) a neurosurgeon who specializes in deep brain stimulation surgery is moving here this summer and they wanted to know if there was anything that they could improve on or are doing right in regard to the entire process of DBS surgery. The lady I spoke with mentioned that another patient told her that he was given a video to watch and in the video, the person turns on his device and is immediately able to walk with no issues. Umm, yeah - that doesn't happen (or at least in my case) - so it really shouldn't be displayed like that. I told her two of the things that Dr. T. (my neurologist) and Dr. K. (my neurosurgeon) did right were that they managed my expectations and they only told me what I needed to know when I needed to know it. I was blissfully ignorant on some things and joyfully glad that I was! And yet, five years later, knowing what I know now, I would still do it all over again. It's been that big of a blessing in my life. Even with setbacks and rough walking days (or weeks!), I am so much better today then I was before the surgery.
I saw this post by TobyMac on Facebook and it's exactly what I needed to read:
I may struggle, but I'm not failing. I may have little pity parties for myself at times but then God always shows up and reminds me how loved I am and that everything's going to be alright.
Thank you for reading this entry. It's taken me awhile to type it because I have fake nails on (from the wedding) and haven't gotten used to typing with them, so if there are any typos, blame it on the nails - haha!
Always remember - God's Got This!!!
No comments:
Post a Comment