Hi Everyone,
Hope all is well with everyone. It's pretty late here (actually early cause it is after midnight here, but ya know). Everyone else has long gone to bed, but my mind is racing, so here I sit sipping some coffee, watching my animals winding down and getting ready to go to their nite nite places (Daisy our dog goes to the foot of Josie's ladder, Peek-a-boo on Josie's bed at her feet, Two-faces on Toby's bed, and Stanley will start in our room.....migrate to Toby's bed about 2am......and then end up in Josie's bed by 4am). Yeah Stanley our oldest cat is the "head of the house" when it comes to my 4-legged "kids". He watches out for EVERYONE and he takes his job VERY seriously. He is mainly drawn to me and Toby, but he watches out for everyone. And Daisy our dog is the most sweet and lovable little pooch you will ever meet. She is also VERY VERY intuitive. Somehow she has picked up the ability to "sense" a seizure in both me and Josie before it happens. She was about 4 months old when we first realized this.....one day she was FRANTICALLY pacing between me and Josie.....trying to get my attention....10 minutes later Josie had a seizure. I thought it was just a coincidence and thought nothing of it. About a month later the same thing happened, but this time with me (she started pacing frantically between me and Jay about 10 minutes before I had a seizure.....by the way me and Josie have the same type of seizures and I will explain those more in a min here). So after that we realized that she has a special gift and we have learned to "listen" to her when she is warning us. When she warns me about Josie I right away shut off all the lights and get a "camp-out" made on the couch with pillows and blankets and guide Josie to the couch. Once this happens Daisy will NOT leave her side for ANYTHING. After it is over Josie will "crash" (she will fall asleep and stay asleep for 6-12 hours straight). And after that she is just fine. Now a little more explanation on what type of seizure this is......it is not one where you pass out or fall on the floor. I'm not sure on the "technical" term for these, but we call them "lupus seizures" (again both me and Josie have these and while she has not been formally diagnosed with Lupus, she has quite a few of the same symptoms that I have). The mild ones we call "shakies" because literally they make you tremble (shake) to the point where it is hard to hold anything without dropping it. These are mild and are more annoying than anything really. The major seizures we call "spaceys". These are the ones that we pray we are around people when they happen. Now while we dont pass out per say....we kinda do in a way (stick with me on this one.....LOL). What happens is like with Josie (i cannot say for me cause i dont remember anything, nor does she when this happens so I will describe Josie when this happens, but both my mom and Jay tell me it is the same thing that happens to me). Josie will get this funny kinda "spaced out" look on her face (like she is seeing right THRU you). I have 3 test questions that I ask her. Now if we are home, Daisy will let me know before I have to ask these questions (and before there is anything out of the ordinary so I actually have time to get a "camp-out" made on the couch). But if we are out and about I use these questions:
Me: Josie are you ok?
Josie: Uh huh (not her normal answer)
Me: Josie did you go to school today?
Josie: Uh huh (again not normal)
Me: Josie are there pink and purple elephants dancing in the sky?
Josie: Uh huh (WARNING BELLS GOING OFF IN MY HEAD)
Again normally if I hafta ask these questions we are out and about somewhere and after that last question I KNOW I have to get her somewhere darkish and where there is not alot of stimulus (away from people, noise, etc). After the seizure is over, I have ROUGHLY 45 minutes to get her home and either in bed or on the couch before she crashes (she will sleep anywhere from 8-16 hours). Once she wakes up, she has no memory of the seizure and will also not remember roughly 6-12 hours before the seizure. Both her and I have had testing done, and it shows that there is no permanent damage cause by these, but they are HIGHLY irritating (especially the memory loss, cause that can be REALLY confusing). While we dont know specifically what causes them, we do know that stress and rapidly flashing lights (or lights flashed in a rapid sequence) are 2 things that WILL trigger them. It can be anything from Christmas lights, fireworks, and some video games. And this next one I'm REALLY not sure why it happens, but both Josie and I can personally attest that 3D video games or movies will do it too. Now neither Josie nor I remember this, but Jay said that one day we were in Wal-Mart and Josie and I were looking at this 3D tv. We put the glasses on and were watching the 3D movie that was on the screen. About 30 minutes after that Josie started a seizure, and about 20 minutes after that, I had one. Luckily, we were on our way home by then and Jay could get us in the house and situated before we crashed. (Poor Jay, he had his hands full that day). Not sure why all that came out.....LOL but it did. Anyway, this is the one thing I do NOT like about the Christmas season. Christmas lights really REALLY mess with both me and Josie (the blinking ones). And we REALLY hafta watch stress levels with all the hustle and bustle of the season. We try to keep it low key (especially right before big family get-togethers).
This past Sunday was OMG AMAZING. We got go to Church and spend some time with our Church family. I REALLY missed everyone, and ya know, it wasn't near as scary as I thought it would be. Everyone treated me the same as they always do. I was kinda shy about having to sit in the middle of the aisle in my chair.....but ya know.....no one treated me like I was in the way (even though I know I kinda was). It did my heart good to see each and every one of them. It is kinda hard to put on paper here. I mean, it was like no one even saw my chair.....they saw Bobbi and that was it. I was the same person as I always have been. I have never felt so at home in a group of people since all these mobility issues started. We were literally one of the very last families to leave the church that morning, we felt that "at home". I cant wait to get back into a weekly routine of Sunday morning Church, and maybe more involved in activities there (as long as I am sure that I will not be in the way and helping instead of hindering).
I'm not sure if i told you guys this next part or not, so please forgive me if this is a repeat. I emailed the seating company here earlier this week to kinda "feel-out" where things are right now. They said that the paperwork is still "in-house" and just went to their "medicare preview" department. That department will look over all the paperwork and see if anything else needs to be added before it goes to medicare and the insurance company for approval. I asked if it was a bit of a "pipe-dream" to think that this part of the process will be over before Christmas. They said while I can certainly hope that is the case, yes that is a bit of a pipe dream. RRRRRR. The more time that I have to think about all this, the more time I have to worry about everything. Will I be able to do the things I need and want to do with this thing......what kinda work-arounds will I need to think up......how will I do this or that........just normal Bobbi worry-wartin.
Tomorrow (or today i guess....LOL it is 2am here) is Thanksgiving. We only have one family get-together today and it is my family's (and usually it is REALLY low key, my sister and her family, my parents, and us......lunch...lounging.....a good game or 6 of rummy.....maybe some guitar playing....and GAB OMG GAB). I wish we could all get together under the same roof more often. Seems like time just goes by faster and faster all the time. I can hardly believe both my niece and nephew are both teenagers. They both make me so proud. They are turning into fine young adults. I still remember when they were toddlers. My niece is 14 and my nephew is 15. I can still remember when my sister was pregnant with my niece and she would drop my nephew off with mom so she could go to her doctors appointments (this was before I was married and I still lived at home with my parents). My nephew would come into my bedroom and climb in my nice warm waterbed to watch cartoons under the blankies with me. We would play peek-a-boo, belly laugh at the cartoons, and ask memaw (my mom) for cookies (HELLO cant watch good cartoons without a snack). I am still a bit uneasy about getting together tomorrow. The mobility thing has me a little gun-shy so to speak. I know that they wont treat me any different, but I also know that this is very new to them also. I just dont want anyone to feel uncomfortable around me. I guess just be the same ole Bobbi that I have always been and let the chips fall where they may. In the spirit of Thanksgiving, I must say I have so much to be thankful for. Even with all the weirdness in my life, I am ALOT luckier than most. I have an AWESOME family that is 100% behind me and rolls with all the punches that come. My husband is the number one bestest in the whole world. I have 2 awesome, loving, silly, sweet, goofy, kind kids that think I am the most AWESOME mommy in the whole universe. Friends that love me for who I am (even with all my eclectic tendencies). I have a roof over my head, food on the shelves, 4 four-legged kids that love and watch out for me and my peeps, and all you guys to listen to me ramble. Really, what more could a gal ask for?
Well, it is WELL after 2am here, and I better go crawl in bed with the fellas. Bubba woke up here a bit ago, and I am sure he ended up in bed with Daddy. My prayer is that they left me enough room to crawl in beside them....LOL. Happy Thanksgiving my peeps. Grab a cuppa coffee, smell the turkey in the oven (or ham or rabbit or whatever the case may be), and give all your peeps a good hug and cuddle. Remember the reason for the season, shut the outside world off for a bit, and show them some LOVE. **smoochies**
No comments:
Post a Comment