Hi Everyone,
Yeah, as you can tell by the title I have had a HORRIABLE day. Honest to goodness downright awful, shoulda stayed in bed totally. Got the kids on the bus, then had to get ready for a doctor's appointment. Fell twice just tryin to get ready. Then went to get a paper prescription from Josie's dr cause for one of her medicines you hafta have the written version, they cannot call it into the pharmacy. Well....getting back in my truck i fell again.....UGH. Ok, then I went to my dr appointment (cause to get my medicine refilled every month i gotta see the doctor which is no problem.....usually. Anyway, every so many visits i gotta take a blood test. And today was HORRIBLE Ok I have REALLY small veins anyway, but it is MUCH worse in cold weather (dont ask me why, but it is). So I always tell them "ummmm you MIGHT wanna use a butterfly needle (this is a smaller needle and it had plastic like "wings" on the side of the needle to help them get where they need to get to). I had my FAV nurse today so I didn't think there was gonna be any probs. Ok, first she tried the arm that we normally use......and it wasn't workin at all. So we moved to the other arm......that wasn't workin either. So after about 10 min we went BACK to my other arm. After about 10 min tryin in that arm she called in the dr. UGH ok......HE didnt listen to me when i said you HAVE to use a butterfly needle. He used a regular needle. AND did you know.....there is a nerve that runs down the rightish side of your left arm. Yeah I didnt know this. Well the vain he decided he was gonna try for is RIGHT by that nerve. OMG OMG OMG OMG OMG OMG he didn't just "graze" that nerve.....HE FLAT OUT STABBED THAT NERVE. Not once, not twice, BUT THREE FLIPPIN TIMES. Ok, we are not talking "your arm goes to sleep" type of pain. We are talking EVERYTHING in my arm from my elbow down had SHOOTING pain. Felt like that part of my arm was being electrocuted with high voltage shooting electricity. Ok on that last try he didnt move the needle away he KEPT IT THERE. And I think I scared the devil outta him, cause on that last one after about 10 seconds i SHOUTED "YOU HAVE TO STOP NOW......RIGHT NOW!!!!!" UGH this was HOURS ago and my arm STILL doesnt feel right. UGH so after i scared the fire outta him (he has never seen me act like that, but OMG THAT huuuuuuurt) he decided to try in my hand (the back of my hand). And THIS time I told him "we ARE going to use a butterfly needle or we are NOT gonna do this". So after pokin and proddin on my hand they FINALLY got what they needed. I'm serious.....I have a fairly high tolerance for pain, but I was in uncontrollable tears. The OMG I am DYING tears. Ok, so then I went to see Jay on his lunch break (my doctor is in the same town that jay works in.......and he was not happy with the doctor cause I was still in tears). Then I stopped by my ma's house to check in on them and vent alittle. THEN I went to the pharmacy.......then I came home.....BUT when I looked at my medicine I discovered it was THE WRONG DOSAGE!!!! RRRRRRRRRRRRRRRRRRR I normally take 10/325mg....they gave me 5/325mg. SOOOOOOO I TRY to call the dr's office BUT on Wednesday's they close at noon for the day.....and it was 12:30. So I hafta call them in the morning. THEN I fell on the way back in from watchin the kids get off the bus. I'm sorry but this was more than I can take. I made sure the kids got a snack and settled in for some cartoons.....excused myself the the bathroom.....and bawled like a baby. I have just totally had it today. I know that I am whining and that I need to slap myself and just buck up, but i just cant help it this evening. I need a cry, i need a blanket, and I need a bed with some cuddles from my hubby.
Wednesday, November 28, 2012
Tuesday, November 27, 2012
Catching up after the Thanksgiving holiday.
Hi Everyone,
Hope everyone had a safe and wonderful Thanksgiving holiday. It was a busy week here, but a GREAT one. We had Thanksgiving at my mom's house on Thursday with my family. OMG it was AWESOME. All the things I was so worried about just kinda blew away with the wind when I walked in the door. Everyone was just as normal as they always are. Ma was busy cookin and tellin peeps to get outta the kitchen. Hollerin at me for "taste testing" things that werent ready yet (ya she hollers but i saw her stealin some noddles when she thought no one was lookin....ROFL). Kids were runnin around, playin nintendo's and gabbin, and the fellers were kicked back watchin tv and talkin and jumpin up to help ma when she hollered. Lunch was OMG PERFECT. Now my peeps say that I am a good cook, and i must admit i LOVE to cook, but there are just some things that mama makes better and OMG her lunch ROCKED!!!!!!! After that the guys went into the living room again and we helped ma clean up. Alitttle different this time......ma always sends leftovers home with me and my sis (cause it is just her and dad and my mom came from a HUGE family.....so when she cooks she cooks for 12 people.....cause that is the way she was taught). Wellllllll.......mom forgot to get some containers to send home with us......so me and my sis ran up to the dollar general for them while Jay and mom worked on cleanin up the other stuff. OMG we were only gone about 15 minutes, but it was AWESOME....we had a blast. Then peeps settled in at the kitchen table for the usual rummy game and pumpkin pies.....YUUUUUUUMMMMM and then OMG OMG OMG DEBATE!!!!!! I LOVE DEBATE. LOL, now i know what you are thinkin......no this is not peeps arguing at all. This is free-spirited debate. Mom usually acts as the moderator....and puts in her two cents in here and there.....but usually she will let us know when it is someone elses turn to "have the floor". Now while the topics are serious....the debate is NOT. There is NO hard feelings and no one gets mad in the least (except for my hubby sometimes, cause it is hard for him to understand that this is actually fun to us). OMG we havent debated in awhile and OMG it TOTALLY ROCKED!!!!! Usually in the end it comes down to me and my sis.....lol, and this time was no different. ROFL......see we were brought up in an independent Bible believing Baptist family. Now me and my sister believe in ALOT of the same principles, we also differ on many of them too. My sister has a slightly stricter view on some things than I do. Not saying one is right or one is wrong, just different. She sees alot of things in the Bible as black and white....VERY little if any gray. While me on the other hand....i agree there are set black and white, right and wrong, areas....BUT there are also alot of gray areas. My belief is that in those gray areas you hafta rely on the Lord to convict you personally about what is right and wrong for you. What may be wrong for you to do, may NOT be wrong for another person do to. Another example of where we differ just a bit is abortion. I am both anti-abortion AND pro-choice. I can hear you now saying "WHAT????? You cant be both!!!! Ok....hear me out here. I believe that abortion is a sin, I believe that it is killing another human being. I believe abortion is flat out WRONG.......BUT in the Bible it says that everyone was given a free will to freely choose right or wrong. I have no right to tell someone else what to do with their bodies. That is between them and God. While I can give them advice and tell them how I believe, that is as far as i can go. I can show them in the Bible and explain my point of view......but that is it.....the choice is between them and God. I will not hold that against a person either. Everyone makes mistakes in life. In God's eyes, sin is sin....there are no "degree's" of sin in His eyes (meaning the person who cusses is just as guilty of sin as a person who drives drunk and kills someone.....both are the same in God's eyes....both are sins). I cant judge you, cause I am a sinner too. Now I must admit, I am more disgusted and upset with the person that drives drunk and kills someone versus the person that cursed....right or wrong, I am human too. But that disgust SHOULD be aimed at the actions NOT the person. Hate the sin, not the sinner (yeah I can tell you THAT is easier said than done in some cases....Cause there are some people to this DAY that I cannot be around because of past things......and that is both wrong on my part and their part.....but that is a whole other thing). Not sure why all that came out.....LOL but it is there. Needless to say, Thanksgiving was a blast.
Early on Saturday morning, we all piled in the truck and headed down to Carbondale (about 2 hrs south of us) to help some friends (and they are more like family than friends) work on the house that they just bought and are fixing up. The focus was fixing the roof this past weekend. OMG I am so excited that they are moving closer to us (they were 5 hrs away....and now are only 2 depending on how fast you drive and road construction). Me and the kids got to help pick up stuff that the guys were throwing down from the roof, and some odds and ends. I must admit I am kinda frustrated at myself for not being able to help more. But I got to make supper for everyone on Saturday evening.....so that made me feel a little better (not much, but a little). The kids were EXCITED that they got to help too. Bubba also found some snails and OMG THAT was awesome. Some of the shells didnt have anyone living in them anymore, but a couple of them were still occupied. We were going to bring a couple empty shells back for his science teacher in a ziploc bag.....but everyone was so tired when we left on Sunday evening that we all forgot. We will hafta dig some more up next time we go down there....LOL. The trip home Sunday night was.....ummmmm......interesting, but ended up ok and kinda fun. When we got about an hour away from home, all the traffic was STOPPED on the interstate (horrible road construction right thru there.....heavy traffic with everyone tryin to get home from the holiday). Luckily we were right by an exit when we realized this and so we got off interstate and took the 2 lane all the way back (which believe it or not we made better time than we normally do on the interstate). When we got home we grabbed some grub, I threw the babies in for a bath, and then cuddle time before bed (everyone fell asleep on the couch within 10 minutes....LOL).
Other than that not much going on here. Kids are gettin back in the swing of school, Jay is back to work, and I am still workin on catchin up the house (OMG not sure i am EVER gonna get caught up). OH HEY, by the way, the school FINALLY made a decision on the bus stop. They have added a stop right here at our house. WOOOOOHOOOOO!!!!!! And Allie and Abbie (the girls that normally get on with my kids) still have their bus stop too (so they dont hafta walk down 10th street either). This just started this week and OMG OMG O M G it is awesome. I dont hafta worry about any of the kids now (both mine and the other 2). Yeah it seems kinda trivial to be excited about something like this, but OMG you dont know how MUCH this takes off my shoulders.
Well......my load of laundry is finished in the dryer and I really need to get it folded here and have the babies help me get it put up. Thanks for listening to me ramble and vent. **smooooochies**
Hope everyone had a safe and wonderful Thanksgiving holiday. It was a busy week here, but a GREAT one. We had Thanksgiving at my mom's house on Thursday with my family. OMG it was AWESOME. All the things I was so worried about just kinda blew away with the wind when I walked in the door. Everyone was just as normal as they always are. Ma was busy cookin and tellin peeps to get outta the kitchen. Hollerin at me for "taste testing" things that werent ready yet (ya she hollers but i saw her stealin some noddles when she thought no one was lookin....ROFL). Kids were runnin around, playin nintendo's and gabbin, and the fellers were kicked back watchin tv and talkin and jumpin up to help ma when she hollered. Lunch was OMG PERFECT. Now my peeps say that I am a good cook, and i must admit i LOVE to cook, but there are just some things that mama makes better and OMG her lunch ROCKED!!!!!!! After that the guys went into the living room again and we helped ma clean up. Alitttle different this time......ma always sends leftovers home with me and my sis (cause it is just her and dad and my mom came from a HUGE family.....so when she cooks she cooks for 12 people.....cause that is the way she was taught). Wellllllll.......mom forgot to get some containers to send home with us......so me and my sis ran up to the dollar general for them while Jay and mom worked on cleanin up the other stuff. OMG we were only gone about 15 minutes, but it was AWESOME....we had a blast. Then peeps settled in at the kitchen table for the usual rummy game and pumpkin pies.....YUUUUUUUMMMMM and then OMG OMG OMG DEBATE!!!!!! I LOVE DEBATE. LOL, now i know what you are thinkin......no this is not peeps arguing at all. This is free-spirited debate. Mom usually acts as the moderator....and puts in her two cents in here and there.....but usually she will let us know when it is someone elses turn to "have the floor". Now while the topics are serious....the debate is NOT. There is NO hard feelings and no one gets mad in the least (except for my hubby sometimes, cause it is hard for him to understand that this is actually fun to us). OMG we havent debated in awhile and OMG it TOTALLY ROCKED!!!!! Usually in the end it comes down to me and my sis.....lol, and this time was no different. ROFL......see we were brought up in an independent Bible believing Baptist family. Now me and my sister believe in ALOT of the same principles, we also differ on many of them too. My sister has a slightly stricter view on some things than I do. Not saying one is right or one is wrong, just different. She sees alot of things in the Bible as black and white....VERY little if any gray. While me on the other hand....i agree there are set black and white, right and wrong, areas....BUT there are also alot of gray areas. My belief is that in those gray areas you hafta rely on the Lord to convict you personally about what is right and wrong for you. What may be wrong for you to do, may NOT be wrong for another person do to. Another example of where we differ just a bit is abortion. I am both anti-abortion AND pro-choice. I can hear you now saying "WHAT????? You cant be both!!!! Ok....hear me out here. I believe that abortion is a sin, I believe that it is killing another human being. I believe abortion is flat out WRONG.......BUT in the Bible it says that everyone was given a free will to freely choose right or wrong. I have no right to tell someone else what to do with their bodies. That is between them and God. While I can give them advice and tell them how I believe, that is as far as i can go. I can show them in the Bible and explain my point of view......but that is it.....the choice is between them and God. I will not hold that against a person either. Everyone makes mistakes in life. In God's eyes, sin is sin....there are no "degree's" of sin in His eyes (meaning the person who cusses is just as guilty of sin as a person who drives drunk and kills someone.....both are the same in God's eyes....both are sins). I cant judge you, cause I am a sinner too. Now I must admit, I am more disgusted and upset with the person that drives drunk and kills someone versus the person that cursed....right or wrong, I am human too. But that disgust SHOULD be aimed at the actions NOT the person. Hate the sin, not the sinner (yeah I can tell you THAT is easier said than done in some cases....Cause there are some people to this DAY that I cannot be around because of past things......and that is both wrong on my part and their part.....but that is a whole other thing). Not sure why all that came out.....LOL but it is there. Needless to say, Thanksgiving was a blast.
Early on Saturday morning, we all piled in the truck and headed down to Carbondale (about 2 hrs south of us) to help some friends (and they are more like family than friends) work on the house that they just bought and are fixing up. The focus was fixing the roof this past weekend. OMG I am so excited that they are moving closer to us (they were 5 hrs away....and now are only 2 depending on how fast you drive and road construction). Me and the kids got to help pick up stuff that the guys were throwing down from the roof, and some odds and ends. I must admit I am kinda frustrated at myself for not being able to help more. But I got to make supper for everyone on Saturday evening.....so that made me feel a little better (not much, but a little). The kids were EXCITED that they got to help too. Bubba also found some snails and OMG THAT was awesome. Some of the shells didnt have anyone living in them anymore, but a couple of them were still occupied. We were going to bring a couple empty shells back for his science teacher in a ziploc bag.....but everyone was so tired when we left on Sunday evening that we all forgot. We will hafta dig some more up next time we go down there....LOL. The trip home Sunday night was.....ummmmm......interesting, but ended up ok and kinda fun. When we got about an hour away from home, all the traffic was STOPPED on the interstate (horrible road construction right thru there.....heavy traffic with everyone tryin to get home from the holiday). Luckily we were right by an exit when we realized this and so we got off interstate and took the 2 lane all the way back (which believe it or not we made better time than we normally do on the interstate). When we got home we grabbed some grub, I threw the babies in for a bath, and then cuddle time before bed (everyone fell asleep on the couch within 10 minutes....LOL).
Other than that not much going on here. Kids are gettin back in the swing of school, Jay is back to work, and I am still workin on catchin up the house (OMG not sure i am EVER gonna get caught up). OH HEY, by the way, the school FINALLY made a decision on the bus stop. They have added a stop right here at our house. WOOOOOHOOOOO!!!!!! And Allie and Abbie (the girls that normally get on with my kids) still have their bus stop too (so they dont hafta walk down 10th street either). This just started this week and OMG OMG O M G it is awesome. I dont hafta worry about any of the kids now (both mine and the other 2). Yeah it seems kinda trivial to be excited about something like this, but OMG you dont know how MUCH this takes off my shoulders.
Well......my load of laundry is finished in the dryer and I really need to get it folded here and have the babies help me get it put up. Thanks for listening to me ramble and vent. **smooooochies**
Thursday, November 22, 2012
My 4 legged peeps, Seizures, and Thanksgiving
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**
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**
Friday, November 16, 2012
Best friend and Thanksgiving
Hi Everyone,
Hope all have had a good day. WOW can you believe it is almost Thanksgiving. OMG wasn't it yesterday that we were all complaining about the heat....LOL. UGH the walls are quickly closing in on me today. I have GOT to get outta this house before it eats me ALIVE I tell ya. Usually I get out of the house for a bit on Fridays, but we are down to one vehicle right now (till Jay gets the little dakota runnin) and today was the first day of shotgun deer season. BUT on a good note, I got to gab with my OMG bestest girlfriend online last night. We have been friends since about 7th grade. She lives about 12 miles from us, but they only have one vehicle too so between Jay's work schedule and her hubby's work it is hard to get together. OMG it was SO AWESOME to get to gab for a bit (even online). It's funny, we can have spells where we are not able to talk to each other for quite awhile, but when we are finally able to talk it is like no time has passed at all. When we were younger it was rare that you would see one of us without the other one (for very long at least). We literally did just about everything together (and still do when we can). Aside from my husband, I can honestly say she is my best friend in the whole world. We have cried together, argued together, gotten into trouble together and OMG belly laughed till we could no longer breathe together. When i get embarrassed or weird about things I can talk to her and she will understand....cry with me....and then kick my bootie and get me goin again. LOL from anyone else I would prickle up and say "WELL fooie on you", but from her I know that it is said in love.....and 99.99999% of the time she is totally right. LOL can ya tell that I miss her something AWEFUL and we are gonna hafta get a movie night planned or something (hint hint if you are reading this chickie WE NEED A MOVIE NIGHT OR GIRLS COFFEE NIGHT OUT). LOL in high school I was always the "odd duck out" (or at least I felt that way), but she ALWAYS made sure that I got in there and didn't go into my shell. Shortly after high school I realized that it REALLY dont matter what people think of me, just be who I am and let the chips fall where they may (something I wished I had caught onto earlier in life). And we I start to get it in my head the "OMG what are people gonna think", she knocks my noggin and reminds me that "DUH.....it dont matter what people think......be comfortable with who you are.....cause there is only one Bobbi....fooie on what peeps think". Be who you are and say what you feel.....cause those who matter dont mind.....and those who mind DONT MATTER. OMG I love that chickie.
Well....we were supposta have my family's Thanksgiving tomorrow.....BUT my brother-in-law has manditory overtime tomorrow sooooooo we will be having Thanksgiving ON Thanksgiving day (which actually works out better cause this way Jay gets to hunt tomorrow too). I really cant wait to see everyone in the same place all at once....LOL. AND my sister is in the Christmas music mood.....ROFL. Still alittle self-concious about everything (cause my ma's house isn't wheelchair friendly so I will be hobbeling around).....but I guess it is like when you are doing something slightly wrong and a cop appears. ROFL I will hafta TOTALLY explain that one (stick with me it will all make sense here in a min). One time me and my ma were picking up pottery for her business all the way over in Indianapolis on the Friday before labor day. Didn't realize till we got over there that her license sticker was 4 months expired, and we had to STILL drive all the way back (about 2 hours depending on how fast you drive). Needless to say.....labor day weekend starting TONS of state police out on the road. Mom is not one to freak out.....but she was close....LOL. So every time a cop would pass us she would stiffen up. I told her "MA.....act like nothing is wrong.....like you know what you are doin....where you are goin...and all is run of the mill. They will leave you alone. BUT if you act all weird they are gonna think ummmm something is fishy there....and they will pull you over. She calmed down and we made it back home with no traffic stops (even thought there were OMG TONS of state police out that day). Now getting back to Thanksgiving here and how that applies. I guess I just gonna hafta quit thinkin about it....do what I can....act like I know what I am doin and all is run of the mill. "Act as though you have faith, and faith shall be given unto you". In other words.....fake it till ya make it.
Well......Jay should be home soon cause it is dark now. And I have done absolutely NOTHING in this house today (fell earlier today and said RRRRRRRRRRRRRRRRRRRRRRRRRRR gonna work on swagbucks....and never got back to doin what I needed to do.....LOL). Don't give me that look, you have days like that too **wagging finger**. But will hafta hit it hot and heavy on the housework tomorrow. And the stuff that I need help with I will hog-tie Jay one of these weekends after deer season here and make him help me out (tag teaming as we like to call it). And the kids will be home tomorrow to help me here and there. Thanks for listening my peeps. **big hugs**
Hope all have had a good day. WOW can you believe it is almost Thanksgiving. OMG wasn't it yesterday that we were all complaining about the heat....LOL. UGH the walls are quickly closing in on me today. I have GOT to get outta this house before it eats me ALIVE I tell ya. Usually I get out of the house for a bit on Fridays, but we are down to one vehicle right now (till Jay gets the little dakota runnin) and today was the first day of shotgun deer season. BUT on a good note, I got to gab with my OMG bestest girlfriend online last night. We have been friends since about 7th grade. She lives about 12 miles from us, but they only have one vehicle too so between Jay's work schedule and her hubby's work it is hard to get together. OMG it was SO AWESOME to get to gab for a bit (even online). It's funny, we can have spells where we are not able to talk to each other for quite awhile, but when we are finally able to talk it is like no time has passed at all. When we were younger it was rare that you would see one of us without the other one (for very long at least). We literally did just about everything together (and still do when we can). Aside from my husband, I can honestly say she is my best friend in the whole world. We have cried together, argued together, gotten into trouble together and OMG belly laughed till we could no longer breathe together. When i get embarrassed or weird about things I can talk to her and she will understand....cry with me....and then kick my bootie and get me goin again. LOL from anyone else I would prickle up and say "WELL fooie on you", but from her I know that it is said in love.....and 99.99999% of the time she is totally right. LOL can ya tell that I miss her something AWEFUL and we are gonna hafta get a movie night planned or something (hint hint if you are reading this chickie WE NEED A MOVIE NIGHT OR GIRLS COFFEE NIGHT OUT). LOL in high school I was always the "odd duck out" (or at least I felt that way), but she ALWAYS made sure that I got in there and didn't go into my shell. Shortly after high school I realized that it REALLY dont matter what people think of me, just be who I am and let the chips fall where they may (something I wished I had caught onto earlier in life). And we I start to get it in my head the "OMG what are people gonna think", she knocks my noggin and reminds me that "DUH.....it dont matter what people think......be comfortable with who you are.....cause there is only one Bobbi....fooie on what peeps think". Be who you are and say what you feel.....cause those who matter dont mind.....and those who mind DONT MATTER. OMG I love that chickie.
Well....we were supposta have my family's Thanksgiving tomorrow.....BUT my brother-in-law has manditory overtime tomorrow sooooooo we will be having Thanksgiving ON Thanksgiving day (which actually works out better cause this way Jay gets to hunt tomorrow too). I really cant wait to see everyone in the same place all at once....LOL. AND my sister is in the Christmas music mood.....ROFL. Still alittle self-concious about everything (cause my ma's house isn't wheelchair friendly so I will be hobbeling around).....but I guess it is like when you are doing something slightly wrong and a cop appears. ROFL I will hafta TOTALLY explain that one (stick with me it will all make sense here in a min). One time me and my ma were picking up pottery for her business all the way over in Indianapolis on the Friday before labor day. Didn't realize till we got over there that her license sticker was 4 months expired, and we had to STILL drive all the way back (about 2 hours depending on how fast you drive). Needless to say.....labor day weekend starting TONS of state police out on the road. Mom is not one to freak out.....but she was close....LOL. So every time a cop would pass us she would stiffen up. I told her "MA.....act like nothing is wrong.....like you know what you are doin....where you are goin...and all is run of the mill. They will leave you alone. BUT if you act all weird they are gonna think ummmm something is fishy there....and they will pull you over. She calmed down and we made it back home with no traffic stops (even thought there were OMG TONS of state police out that day). Now getting back to Thanksgiving here and how that applies. I guess I just gonna hafta quit thinkin about it....do what I can....act like I know what I am doin and all is run of the mill. "Act as though you have faith, and faith shall be given unto you". In other words.....fake it till ya make it.
Well......Jay should be home soon cause it is dark now. And I have done absolutely NOTHING in this house today (fell earlier today and said RRRRRRRRRRRRRRRRRRRRRRRRRRR gonna work on swagbucks....and never got back to doin what I needed to do.....LOL). Don't give me that look, you have days like that too **wagging finger**. But will hafta hit it hot and heavy on the housework tomorrow. And the stuff that I need help with I will hog-tie Jay one of these weekends after deer season here and make him help me out (tag teaming as we like to call it). And the kids will be home tomorrow to help me here and there. Thanks for listening my peeps. **big hugs**
Thursday, November 15, 2012
Just catching up
Hi Everyone,
Sorry it has been a few days since I last wrote you guys. Please forgive me if this post seems to kinda bump from one topic to another.....LOL brain going about 1 gazillion miles a min so I am just gonna blurt out the things that come to mind AS they come to mind.......LOL so warning I may be bumping to and from topics here.
Been busy with the kids this weekend and OMG HURTING like MAD. See this past weekend it was warmer than normal (highs got up to the low 70's) BUT Sunday a cold front came thru and OMG I was curled up on the couch most of the day (even with pain meds, it was just not a good day). Today is not really much better (highs are in the low 40's). Pain is at a high-medium when i am sitting down but when I get up and try to shuffle around OMG OMG OMG OMG OMG yeah not good. BUT on a good note, the kids were home Monday (veterans day, and by the way thank you SOOOOOOOOO much to all those who have fought for our freedom. No matter if you served in peace or war time......you are GREATLY appreciated and loved). Kids helped me out a BUNCH and it was nice to have that extra day in the weekend to spend with them. Just wish daddy (Jay) would have been off to enjoy the slow day with us. He has been on overtime alot lately, BUT good news is this weekend and next weekend he will have his normal fri, sat, and sun off. This weekend is hunting season and Jay is PUMPED. I would rather have him home cuddeling, BUT he is an avid hunter, and I wouldn't ever try to take that away from him. I know how much he loves the woods and the whole hunting experience, and we also like the meat that it brings when he gets a good deer. Now I can handle helping process the deer meat and wrapping and freezing and all that, but anything before it has been field dressed is HIS domain....LOL. Not only does this provide meat for our household, but also helps the area manage deer population (which in our area is GREATLY needed). I cannot tell you HOW many peeps get into accidents cause there are so many deer around here. But I must admit I love driving thru the country with my peeps and seeing a group of deer out in the fields. If we are out in the country and see some usually we try to stop and watch them for a bit. They are BEAUTIFUL animals.
I must admit I am REALLY excited about seeing my sister and her peeps on Thanksgiving. I got to see her and the kids for a bit after my seating appointment on the 6th, but it was only for like an hour or so.....and after not seeing her in person for a whole year it was just not enough to cram in everything. I REALLY miss them alot. Thinking about kidnapping her and the kids for a day to come to my house and help me hang pictures and stuff....LOL. I have NEVER been good at decorating. I know what I want to decorate the house with, but it is the placement of things that I TOTALLY suck at. Now my mom and sister they will look at things and say "well you need to put this near that but keep it away from this other...." and stuff like that. LOL but I must say that my mom and sister have different tastes in decorating than I do. Not to say that there is anything wrong with the way they do theirs....OMG their homes look OMG AWESOME. But my style is just a bit different. Jay calls it "eclectic". I guess I take alittle of my mom's taste, and alittle of my sisters taste, but with a hippie freewill vibe to it. Best way I can describe it is if you have ever watched criminal minds or NCIS......ok my style would be Penelope Garcia (the computer girl) or Abby on NCIS (but I lean more towards Penelope in the style areas). Tye dye, smilie faces, beads, VW beatle cars, Hippie buses with a hint of country, tractors, angels.
Other than that not much going on here really. Thinkin about gettin in touch with insurance to see if i can speed things up a bit with the permenant wheelchair. UGH I just want it to get here so I can get into a routine. And REALLY lookin forward to maybe being able to volunteer at school and some other places.
Well, Jay is needin my hands here (he is packin up stuff for hunting tomorrow.....LOL he is SOOOOOOOOOOOO excited). Thanks for listening my peeps. **smooooochies**
Sorry it has been a few days since I last wrote you guys. Please forgive me if this post seems to kinda bump from one topic to another.....LOL brain going about 1 gazillion miles a min so I am just gonna blurt out the things that come to mind AS they come to mind.......LOL so warning I may be bumping to and from topics here.
Been busy with the kids this weekend and OMG HURTING like MAD. See this past weekend it was warmer than normal (highs got up to the low 70's) BUT Sunday a cold front came thru and OMG I was curled up on the couch most of the day (even with pain meds, it was just not a good day). Today is not really much better (highs are in the low 40's). Pain is at a high-medium when i am sitting down but when I get up and try to shuffle around OMG OMG OMG OMG OMG yeah not good. BUT on a good note, the kids were home Monday (veterans day, and by the way thank you SOOOOOOOOO much to all those who have fought for our freedom. No matter if you served in peace or war time......you are GREATLY appreciated and loved). Kids helped me out a BUNCH and it was nice to have that extra day in the weekend to spend with them. Just wish daddy (Jay) would have been off to enjoy the slow day with us. He has been on overtime alot lately, BUT good news is this weekend and next weekend he will have his normal fri, sat, and sun off. This weekend is hunting season and Jay is PUMPED. I would rather have him home cuddeling, BUT he is an avid hunter, and I wouldn't ever try to take that away from him. I know how much he loves the woods and the whole hunting experience, and we also like the meat that it brings when he gets a good deer. Now I can handle helping process the deer meat and wrapping and freezing and all that, but anything before it has been field dressed is HIS domain....LOL. Not only does this provide meat for our household, but also helps the area manage deer population (which in our area is GREATLY needed). I cannot tell you HOW many peeps get into accidents cause there are so many deer around here. But I must admit I love driving thru the country with my peeps and seeing a group of deer out in the fields. If we are out in the country and see some usually we try to stop and watch them for a bit. They are BEAUTIFUL animals.
I must admit I am REALLY excited about seeing my sister and her peeps on Thanksgiving. I got to see her and the kids for a bit after my seating appointment on the 6th, but it was only for like an hour or so.....and after not seeing her in person for a whole year it was just not enough to cram in everything. I REALLY miss them alot. Thinking about kidnapping her and the kids for a day to come to my house and help me hang pictures and stuff....LOL. I have NEVER been good at decorating. I know what I want to decorate the house with, but it is the placement of things that I TOTALLY suck at. Now my mom and sister they will look at things and say "well you need to put this near that but keep it away from this other...." and stuff like that. LOL but I must say that my mom and sister have different tastes in decorating than I do. Not to say that there is anything wrong with the way they do theirs....OMG their homes look OMG AWESOME. But my style is just a bit different. Jay calls it "eclectic". I guess I take alittle of my mom's taste, and alittle of my sisters taste, but with a hippie freewill vibe to it. Best way I can describe it is if you have ever watched criminal minds or NCIS......ok my style would be Penelope Garcia (the computer girl) or Abby on NCIS (but I lean more towards Penelope in the style areas). Tye dye, smilie faces, beads, VW beatle cars, Hippie buses with a hint of country, tractors, angels.
Other than that not much going on here really. Thinkin about gettin in touch with insurance to see if i can speed things up a bit with the permenant wheelchair. UGH I just want it to get here so I can get into a routine. And REALLY lookin forward to maybe being able to volunteer at school and some other places.
Well, Jay is needin my hands here (he is packin up stuff for hunting tomorrow.....LOL he is SOOOOOOOOOOOO excited). Thanks for listening my peeps. **smooooochies**
Thursday, November 8, 2012
Extreamly frustrated to the point of almost just saying fooie on everything
Hi Everyone,
Hope everyone is doin good this cold November morning. I'm a little frustrated and almost to the point of just sayin heck with everything and just hobble around the rest of my life (yeah I know that is really not an option, but that is how i feel right now). My seating appointment went ok on Tuesday. They did all their tests and they confirmed what all the doctors have been telling me. BUT here is the thing. The chair they say that I NEED I cannot get. Why??? Cause they said that insurance and Medicare will not approve at all. Yes my jaw dropped also. I said "so you mean to tell me that this is the chair that would allow me to do everything that I need and want without having to find to many workarounds......but I'm not allowed to have it.....why wont they approve?" Their answer "your age. That is the only reason they will not approve." SAY WHAT???????? Ok what does my age have to do with the price of tea in China?? Just because I am 35.....my age doesnt change the diagnosis, my age has nothing to do with anything in this. They said they know, but it is what it is and they cannot change it. So they picked out one that comes the closest they can. Even with this said, they said that even the one that they picked that had the bare minimum of what I need we will still have to FIGHT for them to cover it. So I asked point blank, "Ok so let me get this all straight in my head. I cannot have the equipment that I NEED because insurance and medicare believe that they know my situation and medical needs better than 4 separate independent doctors and 2 different PT/OT's. Then they MIGHT approve the bare basic of what I need (heavy on the might part), and I will STILL have to come up with ways to work around things because they wont approve of what I really need." They said "in a nutshell yes that is exactly what the situation is." UGH ok do they do this to everyone? Well....to a point yes, but more so in your particular case. Ummmm WHY???? Cause while you cannot walk correctly.....you can still "shuffle" you feet to a point. We know that you cannot do this without canes, or for very long or long enough for you to be able to do anything at all.....but in their eyes you can shuffle. Insuance and Medicare dont care at all about anything outside of your home. They dont care about getting your kids to the bus stop, shopping for things that you need, church, ANYTHING other than in your home. And even in the home, they dont care that you fall all the time, they only see that you can shuffle to a certian extent and you are only 35....that is the only thing they are gonna look at. If you were older, or if you had fell to the point of where you could not use your legs, THEN they would look beyond your age. DO YOU SEE MY FRUSTRATION. So we are gonna fight for a chair that wont totally meet my needs, but at least MAYBE it will work for what I need it to. Will STILL have to find workarounds. TOTALLY almost to the point of just totally giving up. I fought my doctors for so long on all this, and NOW that I have resided myself to the fact that this is needed I have to FIGHT tooth and nail for it. It's not the doctors that I am having to fight, but insurance and medicare. Tell me how in the devil THAT is gonna work out.
Hope everyone is doin good this cold November morning. I'm a little frustrated and almost to the point of just sayin heck with everything and just hobble around the rest of my life (yeah I know that is really not an option, but that is how i feel right now). My seating appointment went ok on Tuesday. They did all their tests and they confirmed what all the doctors have been telling me. BUT here is the thing. The chair they say that I NEED I cannot get. Why??? Cause they said that insurance and Medicare will not approve at all. Yes my jaw dropped also. I said "so you mean to tell me that this is the chair that would allow me to do everything that I need and want without having to find to many workarounds......but I'm not allowed to have it.....why wont they approve?" Their answer "your age. That is the only reason they will not approve." SAY WHAT???????? Ok what does my age have to do with the price of tea in China?? Just because I am 35.....my age doesnt change the diagnosis, my age has nothing to do with anything in this. They said they know, but it is what it is and they cannot change it. So they picked out one that comes the closest they can. Even with this said, they said that even the one that they picked that had the bare minimum of what I need we will still have to FIGHT for them to cover it. So I asked point blank, "Ok so let me get this all straight in my head. I cannot have the equipment that I NEED because insurance and medicare believe that they know my situation and medical needs better than 4 separate independent doctors and 2 different PT/OT's. Then they MIGHT approve the bare basic of what I need (heavy on the might part), and I will STILL have to come up with ways to work around things because they wont approve of what I really need." They said "in a nutshell yes that is exactly what the situation is." UGH ok do they do this to everyone? Well....to a point yes, but more so in your particular case. Ummmm WHY???? Cause while you cannot walk correctly.....you can still "shuffle" you feet to a point. We know that you cannot do this without canes, or for very long or long enough for you to be able to do anything at all.....but in their eyes you can shuffle. Insuance and Medicare dont care at all about anything outside of your home. They dont care about getting your kids to the bus stop, shopping for things that you need, church, ANYTHING other than in your home. And even in the home, they dont care that you fall all the time, they only see that you can shuffle to a certian extent and you are only 35....that is the only thing they are gonna look at. If you were older, or if you had fell to the point of where you could not use your legs, THEN they would look beyond your age. DO YOU SEE MY FRUSTRATION. So we are gonna fight for a chair that wont totally meet my needs, but at least MAYBE it will work for what I need it to. Will STILL have to find workarounds. TOTALLY almost to the point of just totally giving up. I fought my doctors for so long on all this, and NOW that I have resided myself to the fact that this is needed I have to FIGHT tooth and nail for it. It's not the doctors that I am having to fight, but insurance and medicare. Tell me how in the devil THAT is gonna work out.
Monday, November 5, 2012
UGH I am nervous and a bit weepie
Hi Everyone,
It is 1:30 in the morning and I cannot sleep for ANYTHING. UGH. Tomorrow (well I guess today but ya know) is my seating evaluation. And I am a bit weepie about it right now. I guess it just kinda hit me wrong tonight that this is not going away. I have REALLY mixed feelings right now and none of them make sense to me. I am kinda excited for the idea of moving around and doing things better. But at the same time I am weepie for the fact that I cannot do things the way most people do. I know that sounds stupid, but right now that is the way I feel. I'm also nervous about the appointment itself. I guess I always get this way when it comes to something that I am really new at (or so Jay tells me). And I am nervous about the insurance/medicare approval for all of this. This next part will sound stupid, but it is the way I feel and be forewarned that i'm not sure if it will make sense. I'm afraid that the insurance and medicare will either drag their feet or put me up for denial for the submission for this. Medicare is NOTORIOUS for that, even though they know things are needed. I mean I'm not sure that I am mentally ready for all of this (the full-time use of a wheelchair) BUT the longer that I have to "stew" on it while we wait for the approval the harder it is gonna be when it actually comes time to pick up the wheelchair and use it full-time. Again, sorry if that didnt make much sense. The more time that lapses, the more time I have to sit and think about it (and if you havent noticed by now, I have a tendency to overthink things). On the other hand, my kids are actually looking forward to me having the better wheelchair. I know that sounds weird too, but Toby and I were talking before bed and here is how that conversation went:
Toby: Mama, you go to see the wheelchair doctor tomorrow right?
Me: Yes Bub I do.....how do you feel about that?
Toby: I am REALLY excited about it. Will they have it ready for you to bring home tomorrow?
Me: No Bub, they will hafta wait a bit before they can build it for me. What makes you excited about it?
Toby: Well, mama you fall alot and it hurts you just to walk. I know you try to hide it, but mama I can tell. And this will let you do ALOT more things that the big one wont let you do. In science class, we talk about things that we want to learn more about and then the teacher tells us yes or no and then he helps us look it up online. Then if it is something that has to do with science, we all talk about it. For my turn, I asked about wheelchairs and we looked it up. I really am excited that it will help you do more things and then I wont be as scared to leave you when I go to school.
Me: Bub, you know you shouldn't worry so much about mama. Yeah, I fall quite a bit, BUT you know that mama can take care of you and sis and daddy.
Toby: Yeah mama I know that you are REALLY good at takin care of us, but you cant choose what you worry about, it is just there.
So.....needless to say, yes he has a point......and sometimes it scares me how smart that boy is. But he is very excited about the better wheelchair. He is like me in some ways. He is a thinker. Which can be very good and will take him far in life. On the other hand......he ALSO like me, has a tendency to overthink things. But he is already showing that he has a pretty good head on his shoulders and for that I am thankful.
Well.....sorry about the weird post tonight. Just kinda here and there in my thoughts and worries. Please pray my peeps that all goes better than i expect it too. THAT would be a miracle right there. I had better go join Jay in bed. It is 2am and tomorrow is gonna come early. Thank you SO much for listening to my worry wartin. You really have no idea how much it means to me that you are here to listen. **smoochies**
It is 1:30 in the morning and I cannot sleep for ANYTHING. UGH. Tomorrow (well I guess today but ya know) is my seating evaluation. And I am a bit weepie about it right now. I guess it just kinda hit me wrong tonight that this is not going away. I have REALLY mixed feelings right now and none of them make sense to me. I am kinda excited for the idea of moving around and doing things better. But at the same time I am weepie for the fact that I cannot do things the way most people do. I know that sounds stupid, but right now that is the way I feel. I'm also nervous about the appointment itself. I guess I always get this way when it comes to something that I am really new at (or so Jay tells me). And I am nervous about the insurance/medicare approval for all of this. This next part will sound stupid, but it is the way I feel and be forewarned that i'm not sure if it will make sense. I'm afraid that the insurance and medicare will either drag their feet or put me up for denial for the submission for this. Medicare is NOTORIOUS for that, even though they know things are needed. I mean I'm not sure that I am mentally ready for all of this (the full-time use of a wheelchair) BUT the longer that I have to "stew" on it while we wait for the approval the harder it is gonna be when it actually comes time to pick up the wheelchair and use it full-time. Again, sorry if that didnt make much sense. The more time that lapses, the more time I have to sit and think about it (and if you havent noticed by now, I have a tendency to overthink things). On the other hand, my kids are actually looking forward to me having the better wheelchair. I know that sounds weird too, but Toby and I were talking before bed and here is how that conversation went:
Toby: Mama, you go to see the wheelchair doctor tomorrow right?
Me: Yes Bub I do.....how do you feel about that?
Toby: I am REALLY excited about it. Will they have it ready for you to bring home tomorrow?
Me: No Bub, they will hafta wait a bit before they can build it for me. What makes you excited about it?
Toby: Well, mama you fall alot and it hurts you just to walk. I know you try to hide it, but mama I can tell. And this will let you do ALOT more things that the big one wont let you do. In science class, we talk about things that we want to learn more about and then the teacher tells us yes or no and then he helps us look it up online. Then if it is something that has to do with science, we all talk about it. For my turn, I asked about wheelchairs and we looked it up. I really am excited that it will help you do more things and then I wont be as scared to leave you when I go to school.
Me: Bub, you know you shouldn't worry so much about mama. Yeah, I fall quite a bit, BUT you know that mama can take care of you and sis and daddy.
Toby: Yeah mama I know that you are REALLY good at takin care of us, but you cant choose what you worry about, it is just there.
So.....needless to say, yes he has a point......and sometimes it scares me how smart that boy is. But he is very excited about the better wheelchair. He is like me in some ways. He is a thinker. Which can be very good and will take him far in life. On the other hand......he ALSO like me, has a tendency to overthink things. But he is already showing that he has a pretty good head on his shoulders and for that I am thankful.
Well.....sorry about the weird post tonight. Just kinda here and there in my thoughts and worries. Please pray my peeps that all goes better than i expect it too. THAT would be a miracle right there. I had better go join Jay in bed. It is 2am and tomorrow is gonna come early. Thank you SO much for listening to my worry wartin. You really have no idea how much it means to me that you are here to listen. **smoochies**
Friday, November 2, 2012
WHEW....got outta the house LOL
Hi Everyone,
It is F-R-I-D-A-Y, OH YEAH BABY!!!!!! LOL hope everyone had a good one. My day started off yucky but got better as the day went on a bit. I only got about 3 1/2 hours of sleep cause Jay was kickin in his sleep again. Poor guy, I'm wonderin what is goin on, hope it corrects itself soon. So then I got the babies on the bus. Always hard in the mornings as they are normal kids and just wanna crawl back under the nice warm blankies (and I cant blame them there), but fridays are special cause COME ON IT'S FRIDAY!!!!!!! So after I got them off to school I got dressed and headed into town. Normally Jay is off on Fridays, but he is on overtime today and tomorrow so it was just me. Was going to drop in on my ma's weekly hair appointment just to gab a bit, BUT the place where she does her hair has steps, and that is the only way in the building :( But when I get my lightweight wheelchair I hope to be able to work around those, but for the moment they are impassible for me. So I went and paid a bill, then went to wal-mart for some odds and ends and to look around a bit. Now while I have a love hate relationship with my chair, I must say today I hated it. Yeah it got me where I wanted to go but OMG this thing is hard to maneuver I REALLY hope everything they say about the lightweight ones (the one that is custom fitted to my body) is true (they say they are easier to maneuver and alot more responsive to what you are wanting them to do). I got wore out just in wal-mart. But I havent been outta the house in 2 weeks here so I wasnt gonna just stop there.....LOL. Stopped by the center for independent living and got what little (and it was VERY little) information they had about loans or grants to make the house wheelchair friendly. Went to the mall (keep in mind a small town mall not a big city mall) and looked around a bit. It is a PAIN to get jay to take me there, so I thought while I was out I would visit hallmark, bath and body works, jcpennys, see what is playin in the theaters so I know what to look for on DVD soon (our theater isn't closed captioned so I cant go and understand ANYTHING). Got to talk a bit to the older gentlemen sittin around the candy store drinkin coffee. Then I went to the USDA office to see about their loan/grant program that the center for independent living told me to look into (what a joke). OK.......they only give grants IF you are 62 or over (not anywheres close). They have a loan program BUT couple of things here. FIRST you have to have EXCELLENT credit (and with all the medical things right now we dont). Next you have to be BUYING a different house.....they wont work with one that you already own. Like if you were looking to move, you would get approved, then pick out your house, then they would come in and renovate it to what you need. UUUUUUUUUGH. OK......IF I had the ability to buy a different house......WOULDNT I BE ABLE TO GET THAT IN THE LOAN FOOOOOOR THAT HOUSE. So who the devil can they help with those terms. And of course they didnt have any leads for help for us. Now if I lived in Chicago or Springfield......THEN there would be TONS of agencies that could and would point me in the right direction and they are more lenient in those areas cause they are not rural (kid you not, this is STRAIGHT from the people at the USDA office). I am to the point of saying the devil with it and work with what I got and if I kill myself falling in the process so be it. UUUUUUUUGH. OK......next stop was the school. Our school has an open door policy when it comes to lunchtime. Parents and grandparents can come in and eat with their kids at lunchtime (new program just got started here). So I had lunch with bubba (missed Joe's lunchtime) but I am thinkin this is gonna be a regular Friday thing for me as it was pretty fun. Then I talked to the main man in the bus garage about moving or adding a bus stop at my house. UGH He said that he would come by again (never knew he had been by the first time) and see what we can do. He said we will work something out, BUT the way things have been workin out so far I have little faith. BUT that is ONE thing I WILL fight tooth and nail for. I dont mind putting myself in harms way, BUT when it comes to my babies we WILL do things MY WAY.
Anyway.....FINALLY made it home and in the house and then did some odds and ends and some swagbucks (they have AWESOME deals on gift cards from now till the end of the year, so I am hittin that hot and heavy thru Christmas). Got the babies off the bus and they are PUMPED. Why????? HELLOOOOOOOO COME ON IT'S FRIDAY!!!!!!! And THAT my peeps, was my day. LOL Thanks so much for listening.
It is F-R-I-D-A-Y, OH YEAH BABY!!!!!! LOL hope everyone had a good one. My day started off yucky but got better as the day went on a bit. I only got about 3 1/2 hours of sleep cause Jay was kickin in his sleep again. Poor guy, I'm wonderin what is goin on, hope it corrects itself soon. So then I got the babies on the bus. Always hard in the mornings as they are normal kids and just wanna crawl back under the nice warm blankies (and I cant blame them there), but fridays are special cause COME ON IT'S FRIDAY!!!!!!! So after I got them off to school I got dressed and headed into town. Normally Jay is off on Fridays, but he is on overtime today and tomorrow so it was just me. Was going to drop in on my ma's weekly hair appointment just to gab a bit, BUT the place where she does her hair has steps, and that is the only way in the building :( But when I get my lightweight wheelchair I hope to be able to work around those, but for the moment they are impassible for me. So I went and paid a bill, then went to wal-mart for some odds and ends and to look around a bit. Now while I have a love hate relationship with my chair, I must say today I hated it. Yeah it got me where I wanted to go but OMG this thing is hard to maneuver I REALLY hope everything they say about the lightweight ones (the one that is custom fitted to my body) is true (they say they are easier to maneuver and alot more responsive to what you are wanting them to do). I got wore out just in wal-mart. But I havent been outta the house in 2 weeks here so I wasnt gonna just stop there.....LOL. Stopped by the center for independent living and got what little (and it was VERY little) information they had about loans or grants to make the house wheelchair friendly. Went to the mall (keep in mind a small town mall not a big city mall) and looked around a bit. It is a PAIN to get jay to take me there, so I thought while I was out I would visit hallmark, bath and body works, jcpennys, see what is playin in the theaters so I know what to look for on DVD soon (our theater isn't closed captioned so I cant go and understand ANYTHING). Got to talk a bit to the older gentlemen sittin around the candy store drinkin coffee. Then I went to the USDA office to see about their loan/grant program that the center for independent living told me to look into (what a joke). OK.......they only give grants IF you are 62 or over (not anywheres close). They have a loan program BUT couple of things here. FIRST you have to have EXCELLENT credit (and with all the medical things right now we dont). Next you have to be BUYING a different house.....they wont work with one that you already own. Like if you were looking to move, you would get approved, then pick out your house, then they would come in and renovate it to what you need. UUUUUUUUUGH. OK......IF I had the ability to buy a different house......WOULDNT I BE ABLE TO GET THAT IN THE LOAN FOOOOOOR THAT HOUSE. So who the devil can they help with those terms. And of course they didnt have any leads for help for us. Now if I lived in Chicago or Springfield......THEN there would be TONS of agencies that could and would point me in the right direction and they are more lenient in those areas cause they are not rural (kid you not, this is STRAIGHT from the people at the USDA office). I am to the point of saying the devil with it and work with what I got and if I kill myself falling in the process so be it. UUUUUUUUGH. OK......next stop was the school. Our school has an open door policy when it comes to lunchtime. Parents and grandparents can come in and eat with their kids at lunchtime (new program just got started here). So I had lunch with bubba (missed Joe's lunchtime) but I am thinkin this is gonna be a regular Friday thing for me as it was pretty fun. Then I talked to the main man in the bus garage about moving or adding a bus stop at my house. UGH He said that he would come by again (never knew he had been by the first time) and see what we can do. He said we will work something out, BUT the way things have been workin out so far I have little faith. BUT that is ONE thing I WILL fight tooth and nail for. I dont mind putting myself in harms way, BUT when it comes to my babies we WILL do things MY WAY.
Anyway.....FINALLY made it home and in the house and then did some odds and ends and some swagbucks (they have AWESOME deals on gift cards from now till the end of the year, so I am hittin that hot and heavy thru Christmas). Got the babies off the bus and they are PUMPED. Why????? HELLOOOOOOOO COME ON IT'S FRIDAY!!!!!!! And THAT my peeps, was my day. LOL Thanks so much for listening.
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