I wish I had something fun, whimsical and carefree to talk about, but I really don't. It's kinda been a "for shit" sort of day. Not over the top "for shit" just a tiny bit "for shit". Oh yeah, if you're offended by cuss words, then stay off my blog, just sayin'.
I had problems with dizziness today, really bad dizziness, which I just don't get. I've been taking my thyroid medication. I thought that might be the problem. Plus it's not all the time, just every now and then, like today. IDK what's up with that, but I'm not digging it one little bit. Yeah, yeah, go ahead and say it, Amy, we always knew you were a dizzy broad! You know you were thinking it.
Then there's Colby. Colby, sweet Colby. What in the hell is going on with this kid?! He did not have the best of days today. One day he's a little better, the next day his numbers are out of whack again. Like I've said before, he's not sick enough to take out of school, drive him up to Cincinnati to a germy hospital for observation. They would probably say, well, uh, we don't really know what's wrong with him either. I have a hunch it's just something little. I have some ideas and now it's time to trial and error them one by one and see if anything helps. First is nutrition. In seeing what other SMA kiddos' intake is, it would seem Colby's overall fluid/volume for his feedings is off, way off. Not really sure how this happened since he's followed by 2 nutritionists. So that is something we'll address next week. Also hoping this new bi-pap mask will help. Colby's heart rate used to drop in the 60's when he was sleeping, but not any more. It's more like high 70's, low 80's. If it's not the bi-pap mask, then maybe it's the bi-pap settings. He had a sleep study done back in the fall and they changed his settings. Maybe there's a problem there. I'm also not convinced the cyst on his rib isn't an issue. Think about it. Rib = lung = respiratory. What is Colby's main issue/problem? His respiratory status. I don't know how much experience the ortho dr we took him to on Thursday has with SMA patients. I'm not saying he's a bad doctor, just saying with SMA, so many aspects need to be considered. You constantly have to look at "the big SMA picture" and so many issues affect so many other issues. It's enough to drive you ape shit crazy. Yep, I'd say I'm pretty much there right now.
Okay, let's move on. If I think about this crap any more, my head will explode. So I was watching Pop Up Videos the other day on VH1. Yes, I admit it, I love it when those goofy little bubbles pop up. I can't remember the song, but the bubbles started talking about being single or single women, something like that. It showed a statistic that said the average single woman goes on 4 dates a year. I thought to myself, dang, what a ho bag, haha! I had to make sure I read it correctly, because in my case it should have read 1 date in 4 years, not the other way around. Okay, my social life isn't quite that bad, but I did find that statistic very, let's just say…off, for my circumstances.
Finally watched The Help a couple days ago. Loved it. Been working on my Terrible Awful list, hehe. It seems to grow longer with each passing day. It's hard to believe someone would judge someone else just because their skin is a different color. I just don't get that. I size someone up based on their kindness, integrity, humor, selflessness. I certainly don't want someone looking at me and thinking well, she can't make good decisions because she's a hormonal woman, or she must be dumb because of my heavy country accent. And I REALLY can't believe that such hate and racism so blatantly existed just 50 years ago, not 150 years ago!
I do want to end this blog on a good note. So let me say THANK YOU to everyone who stayed in touch and kept me somewhat sane during my time away from home. My family and friends were so wonderful to me. They called often, sent texts, offered to do whatever they could to help. I have such AMAZING people in my life. If it weren't for you all, I honestly don't know what I'd do. There's no way Colby and I could get through this stinkass SMA journey without you. God has chosen each of you to have a special purpose in my life, and please know that you each hold a special place in my heart, too. You have friends like that, right? Like I have one friend I go to Mass with and who is our travelling buddy. I have one friend I party with a little more than the others, although we haven't seen each other in a month of Sundays. I have one friend I consider "Ole Reliable" because we will be friends until we're old, flabby, have no teeth and are stepping on our boobs. I have another friend, the Pizza King fairy. We lost touch for years but have vowed to never do that again. I consider a couple of Colby's therapists friends. They've been with us for a long time now and they were great to stay in touch during my "solitary confinement". Then there's my Wine Night gals. Sometimes that's the only time we are able to see or talk to each other. My aunt and I are like best pals, we text almost daily. She's so awesomely awesome. I have SMA mommy friends whom I adore. They've been there, done that, and all speak SMA fluently. And hands down I have the best parents on the planet. Lord knows we'd be up Shit Creek without a paddle without them. I have several other friends I think of often. Haven't seen or talked to them in a while. Not on purpose, life just gets in the way sometimes. So listen up gals, I'll be getting in touch soon and we'll do lunch, or brunch, or dinner, or you can just come over and visit. Gots to have my gal pals around or I get really lonely, really quickly. And we can't be having that!
I've rambled on enough for tonight. This sleepy chick is going to bed. Can't wait to see what fun and excitement tomorrow will bring!
Sunday, February 19, 2012
Thursday, February 16, 2012
SCAN AND WAIT, SCAN AND WAIT
Took Colby to Cincy yesterday and had his rib cyst further examined. Ortho wanted a CT scan done. They called today with the results, which showed nothing needs to be done at this time. Amen, hallelujah, thank goodness, so very glad to hear that. Ortho recommended just keeping an eye on it. We'll have it x-rayed and looked at again in a few months, probably in June when we go up for other followup appointments.
I had my full body scan done today. They'll call in a couple days with the results. Nothing to it, heck, I even fell asleep. Thank you to my pal Kim who recommended I take my iPod. I never would have thought to do that, and yes, they let me listen to it during the scan. Must have helped lull me to sleep haha.
Colby went to school today, the only day for this week. His nurse said he did well. He was able to tolerate being off his bi-pap some, but I think he has a long way to go before he's back to baseline. There is something going on with him, besides this recent sinus infection, and now I gotta figure out what it is. He wore his new IU hat to school (they won again last night, you know) but I didn't get a chance to take a pic. I will soon though and will post it. He just looks so darn cute in it.
Colby is sleeping in the big bed with Mama tonight. I asked him twice, yes or no, if he wanted to sleep w/Mama. Both times he said yes. Smiley face. Okay, off to get ready for bed/snuggle time. The best part of my whole day. More tomorrow, now that I have my computer up and running again at home.
I had my full body scan done today. They'll call in a couple days with the results. Nothing to it, heck, I even fell asleep. Thank you to my pal Kim who recommended I take my iPod. I never would have thought to do that, and yes, they let me listen to it during the scan. Must have helped lull me to sleep haha.
Colby went to school today, the only day for this week. His nurse said he did well. He was able to tolerate being off his bi-pap some, but I think he has a long way to go before he's back to baseline. There is something going on with him, besides this recent sinus infection, and now I gotta figure out what it is. He wore his new IU hat to school (they won again last night, you know) but I didn't get a chance to take a pic. I will soon though and will post it. He just looks so darn cute in it.
Colby is sleeping in the big bed with Mama tonight. I asked him twice, yes or no, if he wanted to sleep w/Mama. Both times he said yes. Smiley face. Okay, off to get ready for bed/snuggle time. The best part of my whole day. More tomorrow, now that I have my computer up and running again at home.
Tuesday, February 14, 2012
TICK-TOCK - COME ON CLOCK, MOVE FASTER
Only about 13 hours left and I'm heading home. Can't wait! Wish I could just go to sleep right now and poof. I'd wake up and it would be 1:00 p.m. Tuesday and I would be at the apartment with my sweet boy. I'm actually kind of proud of how I've handled being away from Colby. Okay, there was that 1 complete meltdown, but that was only because of the not-having-internet fiasco. Once that was resolved, I've done fairly well (don't you think). I'm VERY proud of Mr. Colby. I hear he's doing quite well, the antibiotic must be working thank goodness. He's taking longer, more frequent bi-pap breaks. I Skyped with him twice today. It was great to see that 1-toothed face and hear those jabbers of his. He'll only be in school 1 day this week. He actually didn't have school today because of parent/teacher conferences. I wasn't comfortable letting someone else get him up and ready for school (it's not an easy job you know) so I decided to just keep him home tomorrow. Wednesday is his Cincy appointment, but as long as he's feeling okay, I'll send him to school Thursday.
I stayed up late last night and watched a movie, Country Strong, so I slept in this morning. My dad came over and got the van, took it to get the oil changed, check the tires, etc, so we'll be ready for the upcoming Cincy trip. I haven't really done much else today. Finished reading The Help. Can't wait to see the movie. Started working on my taxes, boring. Did the last load of laundry I brought over here, even more boring. Got some stuff already packed and in the Terd. I have tomorrow all planned out. #1 - Sleep as late as I can, although I'm sure I'll be chomping at the bit to get up and out of here. #2 - Pack up the rest of my stuff. #3 - Shower and get dressed. Hmmm, which sweats shall I wear, the black or the gray, decisions, decisions. #4 - At 12:00 p.m., call Pizza King to order a small, extra cheese, sausage and mushroom pizza for carryout. #5 - 12:15 p.m. - Pick up pizza deliciousness. #6 - Get home around 12:30, bridge traffic pending. My friend Kim is going to come over and help me unload the van so I can get inside and get to loving on the kid of mine! At 3:00 his bath aide will be there so we can get him cleaned up. That's as far as I've gotten so far. And of course I have to give my valentine his present (an IU hat and a new Spongebob movie).
There you have it, today and tomorrow summed up in 2 extremely mundane paragraphs. I'm starting to get really worried about this cyst on Colby's rib and his appointment on Wednesday. Can't believe it's finally here. I hate meeting new doctors. If you have a little extra time or energy, could you throw up a prayer to the Big Guy that things turn out okay on this and the cyst is nothing to worry about? Honestly, I think the bad medical news in our home just needs to take a rest for a while. A long while, please and thank you. Okay, time to get some sleep. We're going to be very busy the next few days.
I stayed up late last night and watched a movie, Country Strong, so I slept in this morning. My dad came over and got the van, took it to get the oil changed, check the tires, etc, so we'll be ready for the upcoming Cincy trip. I haven't really done much else today. Finished reading The Help. Can't wait to see the movie. Started working on my taxes, boring. Did the last load of laundry I brought over here, even more boring. Got some stuff already packed and in the Terd. I have tomorrow all planned out. #1 - Sleep as late as I can, although I'm sure I'll be chomping at the bit to get up and out of here. #2 - Pack up the rest of my stuff. #3 - Shower and get dressed. Hmmm, which sweats shall I wear, the black or the gray, decisions, decisions. #4 - At 12:00 p.m., call Pizza King to order a small, extra cheese, sausage and mushroom pizza for carryout. #5 - 12:15 p.m. - Pick up pizza deliciousness. #6 - Get home around 12:30, bridge traffic pending. My friend Kim is going to come over and help me unload the van so I can get inside and get to loving on the kid of mine! At 3:00 his bath aide will be there so we can get him cleaned up. That's as far as I've gotten so far. And of course I have to give my valentine his present (an IU hat and a new Spongebob movie).
There you have it, today and tomorrow summed up in 2 extremely mundane paragraphs. I'm starting to get really worried about this cyst on Colby's rib and his appointment on Wednesday. Can't believe it's finally here. I hate meeting new doctors. If you have a little extra time or energy, could you throw up a prayer to the Big Guy that things turn out okay on this and the cyst is nothing to worry about? Honestly, I think the bad medical news in our home just needs to take a rest for a while. A long while, please and thank you. Okay, time to get some sleep. We're going to be very busy the next few days.
Sunday, February 12, 2012
T-MINUS 45 HOURS AND I'M OUTTA HERE
Oh my goodness, already more than half way through this stinking mess. In approximately 45 more hours, I'll be back home with my sweet Colby boy, where I belong! Just in time to unpack and get organized for our trip to Cincy on Wednesday to get Colby's bone cyst examined. Then on Thursday I go for a body scan to make sure there are no more silly cancer cells running around in my neck/lymph nodes. Yeah, going to be a great week, don't you think? Next weekend Colby and I are doing nothing except spending time together. I'm thinking a long weekend of staying in our pj's, together watching some Spongebob for him and some basketball for me. Heck, I may just let him sleep with Mama in her big bed for a couple of nights so we can catch up on snuggle time.
Actually I'm surprised at how quickly the time is passing. I brought all our dirty laundry from home and have done 4 loads so far. I have to wash my stuff separately during these 5 days, such a pain in the butt. Yesterday I spent probably 4 hours going through a huge bin of pictures. Wow, you talk about a stroll down Memory Lane. I found photos from college, former co-workers, vacations, both husbands (yes, there have been 2), and tons and tons of pics of various family and friends. I was able to greatly reduce the pile and for that I'm grateful, although more organizing is needed. Not much in the mood to do it now. Just couldn't bring myself to look through my wedding pictures. Even after all this time, it still hurts to know that ended being a total bust. It's funny because in the last couple decades I have been through every hairstyle imaginable. Short, really short, long, really long, wavy, spiky, straight, blond, really blond, brunette, you name it, I've had it. Been every size, too, chunky, really chunky, fat, thin, thinner, pregnant, and everything in between.
One of my bestest buddies brought me Pizza King yesterday. She knows me all too well! OMG, it's the best! Pizza King rocks! It was the perfect way to celebrate being finished with this stupid low thyroid diet. I'm thinking why not, just might have to get me some more on the way home Tuesday. Also got a quick visit from my sister-in-law and niece. Contact with the outside world, how nice!
So far today I've read some of my book, done laundry, Skyped with Colby, made cookies, talked on the phone, and now I'm blogging. Hmmm, what else can I do to pass some time? IDK. Let's face it, I suck with down time, mainly because I don't get a lot of it. Think I'll open one of my puzzles. Or maybe I'll try to take a nap. I think late tonight I'll run to the store, when it's practically empty, and grab just a couple of things I need. I'll go through the U-Scan to be certain I stay way far away from people. Geez, this 6-feet of distance rule is starting to give me a complex.
Colby is doing better I hear. Starting to take some 15 to 30-minute breaks off his bi-pap. I'm ready to get home and check him out for myself. Like I said, I know everyone is trying their best to take good care of him, and I'm sure they are. But nobody knows that kid better than I do, and I can't wait to see him. Tuesday afternoon can't come soon enough!
Well, I don't have a darn thing else to report. Guess if anything else exciting happens, like I make myself a sandwich, I'll be sure to let you know about it. Bye for now.
Actually I'm surprised at how quickly the time is passing. I brought all our dirty laundry from home and have done 4 loads so far. I have to wash my stuff separately during these 5 days, such a pain in the butt. Yesterday I spent probably 4 hours going through a huge bin of pictures. Wow, you talk about a stroll down Memory Lane. I found photos from college, former co-workers, vacations, both husbands (yes, there have been 2), and tons and tons of pics of various family and friends. I was able to greatly reduce the pile and for that I'm grateful, although more organizing is needed. Not much in the mood to do it now. Just couldn't bring myself to look through my wedding pictures. Even after all this time, it still hurts to know that ended being a total bust. It's funny because in the last couple decades I have been through every hairstyle imaginable. Short, really short, long, really long, wavy, spiky, straight, blond, really blond, brunette, you name it, I've had it. Been every size, too, chunky, really chunky, fat, thin, thinner, pregnant, and everything in between.
One of my bestest buddies brought me Pizza King yesterday. She knows me all too well! OMG, it's the best! Pizza King rocks! It was the perfect way to celebrate being finished with this stupid low thyroid diet. I'm thinking why not, just might have to get me some more on the way home Tuesday. Also got a quick visit from my sister-in-law and niece. Contact with the outside world, how nice!
So far today I've read some of my book, done laundry, Skyped with Colby, made cookies, talked on the phone, and now I'm blogging. Hmmm, what else can I do to pass some time? IDK. Let's face it, I suck with down time, mainly because I don't get a lot of it. Think I'll open one of my puzzles. Or maybe I'll try to take a nap. I think late tonight I'll run to the store, when it's practically empty, and grab just a couple of things I need. I'll go through the U-Scan to be certain I stay way far away from people. Geez, this 6-feet of distance rule is starting to give me a complex.
Colby is doing better I hear. Starting to take some 15 to 30-minute breaks off his bi-pap. I'm ready to get home and check him out for myself. Like I said, I know everyone is trying their best to take good care of him, and I'm sure they are. But nobody knows that kid better than I do, and I can't wait to see him. Tuesday afternoon can't come soon enough!
Well, I don't have a darn thing else to report. Guess if anything else exciting happens, like I make myself a sandwich, I'll be sure to let you know about it. Bye for now.
Saturday, February 11, 2012
COUNTING DOWN THE DAYS, HOURS, MINUTES, SECONDS
So here I sit, doing my "isolation time" now. It's already 48 hours down, 72 hours to go until I can go home to my sweet Colby boy. I can honestly say that yesterday was one of the worst days I've ever had, EVER. I feel fine physically. The only side effect I have from taking the radioactive iodine pill is food has a bit of a metal taste. It was a hard day emotionally. I won't go into all the crappy details. Let's just say there were technical difficulties, misunderstandings, high emotions, lots of crying and cussing on my part, and an overall feeling of I just can't do this, I just can't, can't, won't, won't. But as the saying goes, this too shall pass, and it did. I'm feeling much better today, and now I feel that I can handle the remaining time away from Colby with some bit of sanity and composure. Thank God for my family and friends. My phone was off the hook yesterday with people wanting to listen, talk, help. I'd like to give a shout out THANK YOU to anyone who tolerated me yesterday. I know I was a complete mess.
I was able to Skype with Colby yesterday, which was wonderful. He seemed a bit confused, like hey Mom, what are you doing on this tiny iPad screen, and why are all these other people taking care of me? I think he's feeling a little better. From the reports I'm getting, he's jabbering more and his heart rate has been much better the last couple of days. It's really hard though, because I'm not there to assess him myself. I worry about him lying in the bed too much, not getting stretched out enough, not getting suctioned enough, he's wondering where I am, etc. We just have to hold a 72 more hours, then things can get back to more of a normal routine for us.
I brought plenty of stuff to do during my solitary confinement. I brought a book to read, The Help, and my Bible, too. I have a couple movies to watch. Brought all the dirty clothes from home, so I can get the laundry caught up in the next couple of days. Also have three 500-piece puzzles to do if I want. Had to bring some comforts from home, too. I have my favorite coffee mug, my fuzzy slippers, my computer and iPod, and one of Colby's Spongebob blankets to cuddle with. I drove to a local park today and walked 3 miles. It was freezing-ass cold, but felt good to get out and burn some calories, clear my head, get some fresh air.
I'll wrap this up for now. Colby and I are going to Skype here in the next few minutes. I'm so excited to see that chunky, one-toothed face of his. I miss him so much.
I was able to Skype with Colby yesterday, which was wonderful. He seemed a bit confused, like hey Mom, what are you doing on this tiny iPad screen, and why are all these other people taking care of me? I think he's feeling a little better. From the reports I'm getting, he's jabbering more and his heart rate has been much better the last couple of days. It's really hard though, because I'm not there to assess him myself. I worry about him lying in the bed too much, not getting stretched out enough, not getting suctioned enough, he's wondering where I am, etc. We just have to hold a 72 more hours, then things can get back to more of a normal routine for us.
I brought plenty of stuff to do during my solitary confinement. I brought a book to read, The Help, and my Bible, too. I have a couple movies to watch. Brought all the dirty clothes from home, so I can get the laundry caught up in the next couple of days. Also have three 500-piece puzzles to do if I want. Had to bring some comforts from home, too. I have my favorite coffee mug, my fuzzy slippers, my computer and iPod, and one of Colby's Spongebob blankets to cuddle with. I drove to a local park today and walked 3 miles. It was freezing-ass cold, but felt good to get out and burn some calories, clear my head, get some fresh air.
I'll wrap this up for now. Colby and I are going to Skype here in the next few minutes. I'm so excited to see that chunky, one-toothed face of his. I miss him so much.
Monday, February 6, 2012
WE SURVIVED TODAY, WHAT WILL TOMORROW BRING
Monday has come and gone. No migraine. No meltdown. Mama is happy. Even though his oxygen was fine, Colby's heart rate was even higher than yesterday. Mama is not happy. It's the old, "hmmmm, let's start ruling out what is causing this" song and dance. I can tell you after a double dose of Miralax and 2 of the fullest diapers I've ever seen, the problem is NOT constipation. I talked to Colby's pulmonologist today. We agreed to discontinue Claritin and start him on Zyrtec. Check, did it. He also recommended starting Colby on Zantac. Many SMA kids have issues with reflux. Although Colby hasn't had this problem before, I'll try anything at this point. Colby simply CANNOT get sick when I'm not going to be around for a few days to take care of him. It's not an option Colbster. So, Colby is now on Zantac. Check, did it. Then when I was giving Colby his afternoon shaky vest/cough treatment/bi-pap break, I suctioned a bunch of yellow-green nasty booger stuff out of his nose. Yeah, I know, TMI. So in the morning I'll call the pulmonologist the updated snot status and we'll take it from there.
This is the kind of stuff we SMAers talk about all the time. Something is up with my kid. Oh no, what does his/her snot look like? Is it thin, thick, what color is it? Something is up with my kid. Oh no, what does his/her poop look like? Is it thin, thick, what color is it? You think I'm kidding, but any SMA parent out there reading this is going yep, been there, done that. As a matter of fact, just had a conversation with an SMA mom last week because her kid was having, and these are her words, "applesauce poop". So, as many times before, in the upcoming days I will be keeping an eye on Colby's poop and snot. If that ain't love, I don't know what is!
It's hard to explain how I'm feeling right now. I haven't had the fatigue the last few days like I had been having. I'm sure it's just anxiousness disguised as extra energy. My nerves are a complete clusterfuck right now. As far as I can tell, things are pretty much lined up around here for when I'm gone. Did I mention Colby and I will be spending 120 horrible, long, painstaking hours apart? I keep telling myself stop worrying, stop obsessing, stop whining, at least it's not chemo, the people taking care of Colby will do a great job, it'll be over soon. You know that noise when you put your finger on your lips and move them up and down and hum? That's what going on in my brain right now.
So let's talk about something else. My Hoosiers had an impressive road win over the weekend, beating rival Purdue. Way to go IU. I'm also thrilled with the outcome of the Super Bowl. I really liked Madonna's half time show. I thought the choreography was amazing. I hear there was a kid from my hometown in her routine. That's pretty impressive for a Henryville boy, to be performing with Madonna at the Super Bowl. Talk about a once in a lifetime event.
I stayed busy while Colby was at school today. The Spongebob border in my bedroom is gone, got that finished. The mountain of mail I usually have overflowing on my desk is now just a few pieces of paper (mostly medical bills). Laundry is caught up. Got Colby's supplies and supplements ordered for the next couple weeks. While Colby is at school tomorrow, I go and get a shot to lower my thyroid level to prepare for my iodine therapy. Now that's a good time if I've ever heard of one.
Many family and friends have called to offer help while I'm getting this thyroid stuff done. Colby and I are so blessed to have so many loving, wonderful, thoughtful people in our lives. I've said it before and I'll say it again. I've made many bad decisions and made many stupid mistakes in my life. But my choice of friends sure isn't one. My support system means everything to me. I can't imagine my world without my bestest girlie friends. I also have the best family in the world. Both my aunts have contacted me just to say hey, thinking of you, love you. And of course my parents have been awesome, as always. They just can't help themselves!
Guess I'll sign off for now. Can't wait to see what tomorrow brings! You just never know around here. Night all.
This is the kind of stuff we SMAers talk about all the time. Something is up with my kid. Oh no, what does his/her snot look like? Is it thin, thick, what color is it? Something is up with my kid. Oh no, what does his/her poop look like? Is it thin, thick, what color is it? You think I'm kidding, but any SMA parent out there reading this is going yep, been there, done that. As a matter of fact, just had a conversation with an SMA mom last week because her kid was having, and these are her words, "applesauce poop". So, as many times before, in the upcoming days I will be keeping an eye on Colby's poop and snot. If that ain't love, I don't know what is!
It's hard to explain how I'm feeling right now. I haven't had the fatigue the last few days like I had been having. I'm sure it's just anxiousness disguised as extra energy. My nerves are a complete clusterfuck right now. As far as I can tell, things are pretty much lined up around here for when I'm gone. Did I mention Colby and I will be spending 120 horrible, long, painstaking hours apart? I keep telling myself stop worrying, stop obsessing, stop whining, at least it's not chemo, the people taking care of Colby will do a great job, it'll be over soon. You know that noise when you put your finger on your lips and move them up and down and hum? That's what going on in my brain right now.
So let's talk about something else. My Hoosiers had an impressive road win over the weekend, beating rival Purdue. Way to go IU. I'm also thrilled with the outcome of the Super Bowl. I really liked Madonna's half time show. I thought the choreography was amazing. I hear there was a kid from my hometown in her routine. That's pretty impressive for a Henryville boy, to be performing with Madonna at the Super Bowl. Talk about a once in a lifetime event.
I stayed busy while Colby was at school today. The Spongebob border in my bedroom is gone, got that finished. The mountain of mail I usually have overflowing on my desk is now just a few pieces of paper (mostly medical bills). Laundry is caught up. Got Colby's supplies and supplements ordered for the next couple weeks. While Colby is at school tomorrow, I go and get a shot to lower my thyroid level to prepare for my iodine therapy. Now that's a good time if I've ever heard of one.
Many family and friends have called to offer help while I'm getting this thyroid stuff done. Colby and I are so blessed to have so many loving, wonderful, thoughtful people in our lives. I've said it before and I'll say it again. I've made many bad decisions and made many stupid mistakes in my life. But my choice of friends sure isn't one. My support system means everything to me. I can't imagine my world without my bestest girlie friends. I also have the best family in the world. Both my aunts have contacted me just to say hey, thinking of you, love you. And of course my parents have been awesome, as always. They just can't help themselves!
Guess I'll sign off for now. Can't wait to see what tomorrow brings! You just never know around here. Night all.
Sunday, February 5, 2012
MELTDOWN AND MIGRAINE MONDAY, MAYBE?
So there are a couple reasons why I haven't blogged much lately. The #1 reason, sleep. I cannot get enough of it lately. I think about it all the time. I crave it. I want it in the worst of ways. Many times after I get Colby in bed, I just want to do what I have to do around the house, then go to bed. I have been sleeping in on the weekends when I can, which is simply fabulous if you ask me. So why am I so sleepy all the time? Not sure. Maybe it's thyroid related. However, my headaches and dizziness are gone so I'm thinking maybe my level is more accurate. Maybe I've got the winter blahs. Perfectly understandable, it's been a very icky, dreary, non-sunshiny winter around here. But the weather never has bothered me much before. I mean, you know, you can't change it, so why let it get to you. If it's cold, put on a coat, if it's raining, grab an umbrella and move on with it for crap's sake. Also, I don't want to sound like a whiner, so if things aren't coming up roses around here (they seldom are lately) I guess I don't want to tell about it. The old if you can't say something nice, then zip it, theory. Or maybe I have a touch of laziness. Or maybe it's a combination of all the above. Who knows. But I'm blogging today so here it goes.
The truth is, things are not rosy around here. They're not horrible. Colby isn't in the hospital or anything like that (it can always be worse, right?) I've been getting things lined up because I'll be spending 5 days away from Colby after getting my radioactive iodine treatment. Yep, 5 continuous days that I won't see, touch, kiss, talk to, take care of or interact with my sweet boy. That's 120 looooong hours. Again, not trying to whine, but that is going to suck horribly. Do you know how many nights I've spent away from Colby in 9-1/2 years? I think 3 total. I've tried to explain to Colby what's going on and why I have to be gone. He gets very quiet when I talk about it. I've spent a lot of time working on getting extra nursing hours approved, scheduling shifts for nurses, sitters and Colby's dad, etc. The good news is the hours I requested were approved, so the schedule is set, along with 2 backup sitters if needed. I've been making sure there are plenty of Colby's supplies here. Also working on cleaning all his tubing, filters, masks, etc. I tried to squeeze back in here after 4 days, but the dr. office said no way, it has to be the complete 5 days since Colby requires so much care/attention. Dammit! I guess "6 feet of distance means 6 feet" and "5 days away means 5 days away". I know the people taking care of him will do a great job. They always do. But let's face it, nobody takes care of you like your mama. I'm trying to keep my mind off of it, but as you can tell, not doing a very good job.
Colby's equipment has been a bit of a thorn in my side lately. His old pulse/ox machine just up and quit one day. No warning, just poof, turned it on and it didn't work. The DME company we use brought another one out the same day. Fantastic, right? Wrong. It's a total piece of crap. We've had Nellcor machines for years and this time they brought us a Masimo. I called them and said please come pick up this piece of crap machine and bring us a Nellcor. No can do. They don't have a contract with Nellcor any more and don't carry those machines. The probes for the Masimo are also complete crap. I've already had to buy extra probes out of pocket. I don't mind paying for the things Colby needs, but I never had to order extra Nellcor probes. I decided to break down and buy a Nellcor pulse/ox out of pocket, so I'm on the hunt for one. Buying a pulse/ox is not as easy as you think. They don't exactly carry them down the street at K-Mart. Also had to buy a carrying case for his portable pulse/ox. He's needing a new bi-pap mask since the one he has is leaving a mark under his nose. I have him an appointment for a mask fitting in a couple of weeks. That's the earliest I'll be able to take him out there. The appointment in Cincy for the lesion/cyst on his rib is in a couple weeks and yeah, that's stressing me out a bit, too. Just something new to worry about.
Then there's Mr. Colby himself. Something is going on with him, but I just can't pinpoint it. Again, I'm sticking with allergies, final answer Regis. He has no fever. His lungs sound clear. His secretions are clear, not yellow and/or green. However, he's having a horrible time sitting up without his bi-pap on. And today his heart rate is off the charts high, doesn't matter if he's sitting up or lying down. Makes me want to run around the room, screaming and pulling my hair out, crying hysterically. Doubt if that fixes the problem though. This is the last thing we need going on before I leave for several days. He's not sick enough to hop in the Terdmobile and go to Cincy. I'm not dragging him through a hospital unless absolutely necessary. He's not extra whiney. He hasn't been sleeping more. I changed his allergy medication a few days ago, just to see if that would help. Went from Allegra to Claritin (loratidine). It hasn't helped so far. Still sending him to school, but like I said, he's having to spend most of the day on his bi-pap while there. I was watching him do his eye gaze earlier today. It cracks me up, I love to watch those eyes of his dance around, make choices. Today he was all over the place. Nothing he said made sense (yeah I know, the apple doesn't fall…haha). He was choosing words like done, until, should. He threw in a few crazy hellos, too, which is always comedy relief. I don't really care what he says, as long as he gives it some effort, which he is doing.
I'm on this special low thyroid diet to prepare for my treatment. I thought it would be the most horrid thing ever, but it hasn't been that bad. The good thing is I've been able to drop a few pounds without having to exercise much, so goodie yay for that. No dairy. No egg yolks. No iodized salt. So basically I've stayed away from anything processed or packaged. If I don't know what kind of salt is in it, I don't have it. Eating lots of fruit, dried fruit, spinach salad with homemade vinaigrette. Lots of no salt organic peanut butter, which is like going from regular soft drinks to diet. Once you get used to it, it's not terrible. But I sure do miss my cheese! That'll be the first thing on my plate once the diet is over, followed by ice cream. Booze is on the "can have" list, thank goodness!
Well, that sums up how it's going around here. Told you it wasn't exactly peachy keen. I know there are many good things in our life, too, but lately I seem to be too overwhelmed to appreciate them. I want to put this whole stupid thyroid business behind me. I want Colby's appointment about his cyst to be over. I want to get my taxes done and get back to redecorating the apartment. Enough of all this scheduling, dr. appts for me and problems with equipment. I have been working on getting the Spongebob border out of my room, 3 walls down, 1 to go. Colby and I were invited to a Super Bowl party today, but honestly, I didn't feel like going. I just want to spend some QT with my boy while I can this week. I need to keep a close eye on his heart rate anyways. So I'll wrap this up for now. I need to feed and change Colby, fold the laundry and get ready to watch the Super Bowl. I don't care who wins, as long as it's not the Patriots.
The truth is, things are not rosy around here. They're not horrible. Colby isn't in the hospital or anything like that (it can always be worse, right?) I've been getting things lined up because I'll be spending 5 days away from Colby after getting my radioactive iodine treatment. Yep, 5 continuous days that I won't see, touch, kiss, talk to, take care of or interact with my sweet boy. That's 120 looooong hours. Again, not trying to whine, but that is going to suck horribly. Do you know how many nights I've spent away from Colby in 9-1/2 years? I think 3 total. I've tried to explain to Colby what's going on and why I have to be gone. He gets very quiet when I talk about it. I've spent a lot of time working on getting extra nursing hours approved, scheduling shifts for nurses, sitters and Colby's dad, etc. The good news is the hours I requested were approved, so the schedule is set, along with 2 backup sitters if needed. I've been making sure there are plenty of Colby's supplies here. Also working on cleaning all his tubing, filters, masks, etc. I tried to squeeze back in here after 4 days, but the dr. office said no way, it has to be the complete 5 days since Colby requires so much care/attention. Dammit! I guess "6 feet of distance means 6 feet" and "5 days away means 5 days away". I know the people taking care of him will do a great job. They always do. But let's face it, nobody takes care of you like your mama. I'm trying to keep my mind off of it, but as you can tell, not doing a very good job.
Colby's equipment has been a bit of a thorn in my side lately. His old pulse/ox machine just up and quit one day. No warning, just poof, turned it on and it didn't work. The DME company we use brought another one out the same day. Fantastic, right? Wrong. It's a total piece of crap. We've had Nellcor machines for years and this time they brought us a Masimo. I called them and said please come pick up this piece of crap machine and bring us a Nellcor. No can do. They don't have a contract with Nellcor any more and don't carry those machines. The probes for the Masimo are also complete crap. I've already had to buy extra probes out of pocket. I don't mind paying for the things Colby needs, but I never had to order extra Nellcor probes. I decided to break down and buy a Nellcor pulse/ox out of pocket, so I'm on the hunt for one. Buying a pulse/ox is not as easy as you think. They don't exactly carry them down the street at K-Mart. Also had to buy a carrying case for his portable pulse/ox. He's needing a new bi-pap mask since the one he has is leaving a mark under his nose. I have him an appointment for a mask fitting in a couple of weeks. That's the earliest I'll be able to take him out there. The appointment in Cincy for the lesion/cyst on his rib is in a couple weeks and yeah, that's stressing me out a bit, too. Just something new to worry about.
Then there's Mr. Colby himself. Something is going on with him, but I just can't pinpoint it. Again, I'm sticking with allergies, final answer Regis. He has no fever. His lungs sound clear. His secretions are clear, not yellow and/or green. However, he's having a horrible time sitting up without his bi-pap on. And today his heart rate is off the charts high, doesn't matter if he's sitting up or lying down. Makes me want to run around the room, screaming and pulling my hair out, crying hysterically. Doubt if that fixes the problem though. This is the last thing we need going on before I leave for several days. He's not sick enough to hop in the Terdmobile and go to Cincy. I'm not dragging him through a hospital unless absolutely necessary. He's not extra whiney. He hasn't been sleeping more. I changed his allergy medication a few days ago, just to see if that would help. Went from Allegra to Claritin (loratidine). It hasn't helped so far. Still sending him to school, but like I said, he's having to spend most of the day on his bi-pap while there. I was watching him do his eye gaze earlier today. It cracks me up, I love to watch those eyes of his dance around, make choices. Today he was all over the place. Nothing he said made sense (yeah I know, the apple doesn't fall…haha). He was choosing words like done, until, should. He threw in a few crazy hellos, too, which is always comedy relief. I don't really care what he says, as long as he gives it some effort, which he is doing.
I'm on this special low thyroid diet to prepare for my treatment. I thought it would be the most horrid thing ever, but it hasn't been that bad. The good thing is I've been able to drop a few pounds without having to exercise much, so goodie yay for that. No dairy. No egg yolks. No iodized salt. So basically I've stayed away from anything processed or packaged. If I don't know what kind of salt is in it, I don't have it. Eating lots of fruit, dried fruit, spinach salad with homemade vinaigrette. Lots of no salt organic peanut butter, which is like going from regular soft drinks to diet. Once you get used to it, it's not terrible. But I sure do miss my cheese! That'll be the first thing on my plate once the diet is over, followed by ice cream. Booze is on the "can have" list, thank goodness!
Well, that sums up how it's going around here. Told you it wasn't exactly peachy keen. I know there are many good things in our life, too, but lately I seem to be too overwhelmed to appreciate them. I want to put this whole stupid thyroid business behind me. I want Colby's appointment about his cyst to be over. I want to get my taxes done and get back to redecorating the apartment. Enough of all this scheduling, dr. appts for me and problems with equipment. I have been working on getting the Spongebob border out of my room, 3 walls down, 1 to go. Colby and I were invited to a Super Bowl party today, but honestly, I didn't feel like going. I just want to spend some QT with my boy while I can this week. I need to keep a close eye on his heart rate anyways. So I'll wrap this up for now. I need to feed and change Colby, fold the laundry and get ready to watch the Super Bowl. I don't care who wins, as long as it's not the Patriots.
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