I know I have talked about deserving an Oscar for how I try to “act” normal. If you see me daily, you would know when I just can’t play the “role”. I have intentionally been silent on the blog for several reasons. Some are reasons that are not about the Tarlov Cysts Disease so I try not to cover them. Let us face it, I started this blog to help others know what a person can expect if they have active cysts. So if I were to put a lot of personal stuff on here, then I would not be staying true to the purpose of the blog.
So, I am sharing a personal here, sorry. My daughter is getting married within the week. In my former life, I was a wedding planner. I love doing center pieces that do not require live flowers; I love designing table scapes and room placements. I would get lost in the design and try to put a piece of the bride in every job I did. Well, the daughter has decided to do a brunch for a few people; secret is, she did not want to do anything. Don’t tell her I told you. And, yes, what would have taken me months to design and do was being done in a few weeks. I am pooped! All the running has set me into a flare. Even buying a dress and all the necessary hoopla that goes with buying a new size. Add, not having the right sized hoopla. This girl had to be fitted; you women will know exactly what I am talking about. I had attempted to try and find the correct size, for my new body, but was not having success. So I gave in and tried at least 20 of them suckers on, with the help of a good specialist. Each one sat on my spine in a different place, and to do the body justice I was having to wear them tighter than my normal. I think I grossed the girl out; when she was helping with one item she whispered “oh, I think I see one“. I had explained to her why I was having such a problem with finding the ‘right size’. She asked if they hurt. My answer was, ‘if the hooks set on it then, yes, it was uncomfortable’.
I can, for sure, tell you where the cysts that are in that area are on my spine! One of those lovely “hoopla’s” hit a spot on the spine and everything going down my spine and arms started tingling. The sales girl had just barely gotten it hooked and I was begging her to get that off me. I had to ask her to leave so I could re-group. I had to leave the dressing room and walk around; but I was in so much discomfort I gave up. My chauffeur said I was in there for a few hours, but I think he exaggerated a bit. An hour maybe, but not two.
So just sitting here and thinking about what I have to do to finish dressing myself for this reception/brunch I started listing my to-do’s. First up is find a ‘hoopla’ that will not show under the dress, then get the table runner that will go under the cake [pancake wedding cake! Gluten free, of course!] to the bakery, pre-light candles and cleaning finger prints off the holders, and then get everything to my daughter’s home which will be closer to the restaurant that is doing the brunch. Finally, to rest for the two days before the event and venue set up. Once again, this wedding planner will be under tables securing runners. Bet you didn’t know planners are sometimes under those tables shoving cardboard to keep them from rocking. I even rub my hands along the chairs to make sure no fine dresses will be picked from the disastrous chairs. Imagine doing that for 200 chairs. Walking around each table to make sure the linens are hung equally. I could go on and on about the things I made lists to do on my final inspection of reception venues.
I wanted to share all the above to let my readers know that I try to have an ordinary, as possible, life. I find joy where I can; I say “no” when I need to. I cry when I need to. I do what I need to do, to be the best possible ‘me’ I can be for those that need me. I am learning to laugh at my mistakes. I am learning to laugh at having to have a stranger hook bras for me. I am learning to communicate with doctors better. Heck, I even asked to be moved out of the last exam room I was in because it reeked of pee. But most important I am learning that the moment in this instant is much more important than the moment in a few days.
I have pushed myself to the extreme and have had to resort to medications that I would normally not use. But that is OK, in this and for this purpose, since my daughter better not get married again, [lol]!
But let me share my recent “fail”. I have been so absorbed in trying to do for the reception that I completely ‘forgot’ about the husband. He has skin cancer popping up on his body. This, not so smart, wife let him drive himself to the doctor’s office an hour away. The first time he went, it did not even dawn on me that that was where he was going. Let me reiterate that he drove himself an hour away to have the biopsies and one was not a small one. Then he drove himself home. I keep thinking about what would have happened if he started bleeding and couldn’t get it to stop or even passed out.
A few days later I got a text that I needed to get to WV to help with some family things and guess what! As I was talking to the chauffeur about what days he could drive me up there, he just looked at me like I had lost it. Again, major “fail”. He had to go back to the doctor to let them finish his biopsy and to stitch his back closed. [Can I say gross?] I went with him for this visit. No way was this, feeling stupid and guilty, wife failing a third time in two weeks. I can say there was no way he was getting home by himself this visit. He was in pain! Plus his body loves to bleed. I know – gross. So I started us in the direction of home, and I think he was paying more attention to me, than I had been of him, these last few weeks. Because, he asked if I wanted to stop halfway home and grab an early dinner. I was starting to use the cruise control up and down, hoping he would not catch on. I never told him I was, but maybe he saw. I sure did not nix the stopping to eat, since it would allow my legs to rest and we could make it home easier.
Oh, on the doctor’s office, I will do a short update in a few days. Even after two showers I still think I can smell the reek from that exam room.