Daily Ooos: Wednesday, May 1

[vickyday]

Ask me anything. I will happily answer. This was a huge family secret for so long, I have it but didn't know, my first born had it but I didn't know. My mom wouldn't talk about it so I had no idea. Was my third child who was the worst the fastest and a doctor said hey I think CMT and when I asked my mom it all came out that yea she knew and my family line had been studied back 9 generations!!! All the way back to Robert Louis Stevenson. So cool piece of history that means nothing but still cool. So yes, it was a secret which lead to my oldest not getting help sooner then he could have. So please ask. I love sharing and tend to overwhelm people because it feels helpless and they want to help. No, this is not fixable and there isn't "treatment" They label is under MS but its not the same. They have some similarities but mine is all about the nerve highway. The "treatment" for us at the moment is PT to keep the muscles stretched so they dont shrink up, build muscle as you can, move move move. The moment you stop moving and things die off faster you loose it for good. My three boys, their legs are bone covered in skin. Its so sad to see young men with bone and skin for legs. They just have the hardest time trying to build muscle that they dont try. They still move and do stretches. My oldest is in AFO (Ankle foot orthotics) to keep his foot drop under control and stop the ankle rolling. Muscle cramps in the calves is so normal and so painful. Usually while sleeping. It has been waking me up at night since I was 19, over 30 years. And yes, I know the spoon theory. One reason I have a schedule is to keep my spoons safe and effective. Sunday is busy mornings with church so I dont leave my house Monday. But I also clean it that day so I tend to keep Tuesday free to recover too. Wednesday is usually a super busy (school year) time so Thursday is a dont bug me I'm on the couch day. I'm trying to show my boys that its okay to rest when you need to as long as you dont use CMT as an excuse. Then its not okay to rest. Okay yeah as you can see, ask and I will reply LOL. God doesn't make mistakes. I am here to experience this, learn, teach and educate as many as I can. While my mom was ashamed and wound't talk about this (I went through huge anger issues) I am the opposite. Lets talk about this common unknown disease and make it common.

Love your outlook and you are so right about God not making any mistakes... always does things for our good and His glory... even though we don't think so!

 

[AK_Tracy]

To top that all off, I was diagnosed with obstructive sleep apnea and I have to go on a CPAP machine. It just came yesterday so I have to call them to set it up. When I did my sleep test, I could barely sleep at ALL with just the nose cannula and the O2 wire. How am I going to sleep with a hose, a full face mask, and on my back if I could barely do those things?? I know it's important, and I know I need to - but darnit I'm mad about it. It feels embarrassing. Like the fat girl needs the old lady snoring machine. I'm not mentally aging well sometimes.

If no one tells you, look and see if they offer desensitization for the CPAP. My friend has struggled for four years and still cant wear his mask and they are FINALLY sending him to desensitization. Its super common yet no one talks about it. Plus you might need in person tweaks on how the mask fits and how to work it with your sleep study. Just observations from afar watching my friend struggle. I hope you are able to adapt quickly.

 

[AK_Tracy]

I usually do them numerically, too.

Yeah that means I am not crazy........ or at least I am not alone

 

[AK_Tracy]

Love your outlook and you are so right about God not making any mistakes... always does things for our good and His glory... even though we don't think so!

Yes He does! And because he allowed me to see how horrible this is as a secret I have been super loud on Instagram. Only reason I have the account was to shout out to everyone. Because I did, I was able to talk a couple moms off the roof about surgeries their children needed too. Its been amazing and I love our Doc who did the surgeries. No mistakes, I just have to be willing to do His will.

 

[vickyday]

Yeah that means I am not crazy........ or at least I am not alone

You're definitely not crazy! That's my final answer!

 

[vickyday]

Yes He does! And because he allowed me to see how horrible this is as a secret I have been super loud on Instagram. Only reason I have the account was to shout out to everyone. Because I did, I was able to talk a couple moms off the roof about surgeries their children needed too. Its been amazing and I love our Doc who did the surgeries. No mistakes, I just have to be willing to do His will.

AMEN! Being willing is probably the hardest part! But the most rewarding!

 

[pachimac]

If no one tells you, look and see if they offer desensitization for the CPAP. My friend has struggled for four years and still cant wear his mask and they are FINALLY sending him to desensitization. Its super common yet no one talks about it. Plus you might need in person tweaks on how the mask fits and how to work it with your sleep study. Just observations from afar watching my friend struggle. I hope you are able to adapt quickly.

I've never heard of that. I'll have to ask when I call today. My CPAP does have a ramp up feature that you can adjust so that it slowly works up to the pressure you need. It gives you the time to fall asleep.

Oh. and here's the bathroom AFTER they said they tidied up!!

 

[Cherylndesigns]

I'm not sure. I don't know how many we had but it was a LOT!! @Cherylndesigns uses it a lot,., Cheryl?

Google Drive can move a lot - You can send an entire PSD file on it, not too many other platforms can handle these large files. I used Google Photos, too. They have more flexibility than other photo platforms.

 

[BrightEyes]

Busy, busy, busy.... DD#3 called to say she and her son were on the way down to look at the treadmill just as I was posting this morning. I managed to find the instruction manual for it after a bit of a search. They plugged it in and it works!!! They loaded it into her car - is just barely fit! It is going into their sunroom where they have the other exercise equipment. They are also going to take a box of gorilla shelving once they get their garage cleaned. DH bought the shelving when we were talking about adding shed in the backyard.... but the community codes committee (at the time) were being PITAs so we never put it in.

I called my Xfinity guy to come take a look at a spot in yard by the driveway that is right over where the big cable was buried. I have photos showing them digging in that exact spot. The spot is dark and is getting bigger as time goes on and has a funky smell. He is going to be talking to the cable people as I had reported last week and no one has been out to check on it. Looks like I will need to contact the city and have them come and check it out, too.

So with all that going on, I haven't had time to sit on the chair massager yet. Going to fix an early supper and then relax and read while on the massager.

 

[mimes1]

I've never heard of that. I'll have to ask when I call today. My CPAP does have a ramp up feature that you can adjust so that it slowly works up to the pressure you need. It gives you the time to fall asleep.

Oh. and here's the bathroom AFTER they said they tidied up!!
View attachment 418139

Looks like a layout waiting to happen!

 

[mimes1]

Hi Everyone! I've been taking notes on everybody's day so can write personals more efficiently!! My day here was quiet and satisfying. Mark and I started with coffee this morning outside at the chimenea. He'll be going back to work soon after his surgery so we want to savor every moment. @vickyday like you, my Mark wants me to stay home while he works, but I have the same thoughts as you. I sure enjoy being home, chattin and scrappin, training the dogs, working in the yard, but the finances would be happy if something part time showed up. Mark and I put all the furniture back in mom's room this morning - quite an accomplishment with him recovering from surgery. But with a couple dollies and some creative movements we got the job done and no one got hurt. Then I spent the rest of the afternoon doing housework, getting organized - it feels really good. Also you all will be proud of me. I only checked in at Scrap Girls once, unconsciously first thing this morning when I clicked on my shortcut. The message board will be there through tomorrow but I'm not torturing myself any longer. This feels like home now and where I'm checking first thing in the morning.

@AK_Tracy do you know how much I love you? You are so incredible. Your attitude about everything is positive and how you want to help others is so wonderful. God is definitely using you for His glory! What is spoon therapy?

@BrightEyes I actually hollered "Yay!!" out loud when I read that your GS is going to help with your spraying! So happy about that. Isn't accepting help sometimes the hardest thing? I'm glad you said yes.

@taxed4ever I hope your hike went well! Did you see any cool birds?
@Terri M Looking forward to seeing your challenge pages!
@vickyday I'm praying for your friend in the hospital. That's so nice that you were able to go see and spend time with her. I'm assuming a Goldwing is a motorcycle? Do you each drive your own? My Mark is on Mounjaro as well. Do you have as much trouble getting it as we do? It's always out of stock and then we have to go hunt it down at a different pharmacy, then get the Rx transferred to that pharmacy. Our insurance changed today. Oh Boy. That's a whole "nother thing. 4 of Mark's daily's aren't covered now so we're going to have to contact his doctors for alternate drugs.

@faerywings A bear??? In your yard? That's cool but also pretty scary!! Hope he doesn't head into your kitchen looking for a snack. Can't wait to hear how your raised garden turns out!

@bcgal00 You are quite a motivated person! Reading how busy you are is both inspiring and exhausting! I'm excited to hear about your bird banding. We did that at work all the time and it's neat to see it done locally.

@Cherylndesigns Sorry to hear about the thunderstorms in your area!! When we first moved here, we'd been here 2 days and the loudest thunderstorm I'd ever heard was right over our house. It was a little intimidating! It sounds like your kitty didn't like your storm either.

Off to go get dinner out of the crock pot - made fajita soup and corn bread for dinner. After dinner I better get scrappin.
Hope you all have a good rest of your day and I'll see you all tomorrow~

 

[AK_Tracy]

@AK_Tracy do you know how much I love you? You are so incredible. Your attitude about everything is positive and how you want to help others is so wonderful. God is definitely using you for His glory! What is spoon therapy?

Thank you! I try so hard not to get stuck in doom n gloom. I have my moments, like when I cant hold on to something or open a jar cause my thumbs wont work but mostly I am a mean woman and I will win LOL Spoon Therapy is that you have five spoons for the day. Every activity takes a part or all the spoon. Some days getting out of bed takes three spoons. You're careful and aware of what you use your spoons for and when they're gone they're gone. No more happens that day. Today I woke up with five spoons. I used one to get out of bed, dress, showered, and out the door. I use three on my coffee date (mental spoons) and I have one left. I will use half the spoon to open home canned foods and throw them together for dinner and the other half to get in my jammies later. There are better explanation out there and cute memes but that's the basics. we all have five spoons and some people can spread them out and get lots done. Sometimes it takes all five spoons to walk from the bed to the couch. Some days you wake up with fewer spoons too.

I hear you on ScrapGirls. I checked once just because I know it will go until tomorrow but mentally I said goodbye yesterday. I am home here. I made a choice this morning not to look while drinking coffee. I only looked this last week just to see the final goodbyes. I am sad but I'm good too. I have my new home. I will visit the neighbors once a day to say hi like I promised but here is where I will have my coffee. And Wine. And beer and laughter and fun and layouts.

 

[AK_Tracy]

Amy sending you a PM with Spoon Theory. Its not therapy like I wrote LOL

 

[JeanneMN]

I have been in a weird space since coming home from Wendover. I can't seem schedule myself well anymore and I'm dropping balls. It just seems like the day goes and I look back and see what I've done and it's never finishing what I planned. I need to work on that this month.

To top that all off, I was diagnosed with obstructive sleep apnea and I have to go on a CPAP machine. It just came yesterday so I have to call them to set it up. When I did my sleep test, I could barely sleep at ALL with just the nose cannula and the O2 wire. How am I going to sleep with a hose, a full face mask, and on my back if I could barely do those things?? I know it's important, and I know I need to - but darnit I'm mad about it. It feels embarrassing. Like the fat girl needs the old lady snoring machine. I'm not mentally aging well sometimes.

Melissa is enjoying her job and she does two things at the store now - the customer service desk and the Drive up and Go grocery. It's wonderful to see her grow up and be more responsible.

I just got a "design your own program" from the gym and man, that man wants me to do stuff this body just isn't ready for. I'm going to ease into it.

My foray into healthy eating and cooking has led me to something I never thought I'd eat: Hummus. I get a roasted garlic hummus and use it as a veggie dipper and it's so yummy!!! I also learned that there are many ways to cook rather than fry veggies. I'm still a carnivore to the core, but veggies are getting more of a play in my life.

I have a blood test/labs in two weeks and we will see how my A1C, cholesterol, and triglycerides are doing. I'm hoping for a really good report!!

OMG I started laughing as I read your post. As a fellow Cpap person for close to 10 years it doesn't mean your waayyyy chronologically challenged or fat. There are so many different style masks now you wouldn't necessarily have to have a full face mask. There are styles where you can sleep on your stomach. I had to switch to back sleeping when I had a double knee replacement and had to go to a full face mask because my mouth would drop open LOL and I'd snore with it. Using a chin strap to keep my mouth closed mad e me claustrophobic. Some fill face masks are comfier than others. My biggest complaint is c-pap hair You will feel better though, you can trust me on that.

 

[vickyday]

Hi Everyone! I've been taking notes on everybody's day so can write personals more efficiently!! My day here was quiet and satisfying. Mark and I started with coffee this morning outside at the chimenea. He'll be going back to work soon after his surgery so we want to savor every moment. @vickyday like you, my Mark wants me to stay home while he works, but I have the same thoughts as you. I sure enjoy being home, chattin and scrappin, training the dogs, working in the yard, but the finances would be happy if something part time showed up. Mark and I put all the furniture back in mom's room this morning - quite an accomplishment with him recovering from surgery. But with a couple dollies and some creative movements we got the job done and no one got hurt. Then I spent the rest of the afternoon doing housework, getting organized - it feels really good. Also you all will be proud of me. I only checked in at Scrap Girls once, unconsciously first thing this morning when I clicked on my shortcut. The message board will be there through tomorrow but I'm not torturing myself any longer. This feels like home now and where I'm checking first thing in the morning.

@AK_Tracy do you know how much I love you? You are so incredible. Your attitude about everything is positive and how you want to help others is so wonderful. God is definitely using you for His glory! What is spoon therapy?

@BrightEyes I actually hollered "Yay!!" out loud when I read that your GS is going to help with your spraying! So happy about that. Isn't accepting help sometimes the hardest thing? I'm glad you said yes.

@taxed4ever I hope your hike went well! Did you see any cool birds?
@Terri M Looking forward to seeing your challenge pages!
@vickyday I'm praying for your friend in the hospital. That's so nice that you were able to go see and spend time with her. I'm assuming a Goldwing is a motorcycle? Do you each drive your own? My Mark is on Mounjaro as well. Do you have as much trouble getting it as we do? It's always out of stock and then we have to go hunt it down at a different pharmacy, then get the Rx transferred to that pharmacy. Our insurance changed today. Oh Boy. That's a whole "nother thing. 4 of Mark's daily's aren't covered now so we're going to have to contact his doctors for alternate drugs.

@faerywings A bear??? In your yard? That's cool but also pretty scary!! Hope he doesn't head into your kitchen looking for a snack. Can't wait to hear how your raised garden turns out!

@bcgal00 You are quite a motivated person! Reading how busy you are is both inspiring and exhausting! I'm excited to hear about your bird banding. We did that at work all the time and it's neat to see it done locally.

@Cherylndesigns Sorry to hear about the thunderstorms in your area!! When we first moved here, we'd been here 2 days and the loudest thunderstorm I'd ever heard was right over our house. It was a little intimidating! It sounds like your kitty didn't like your storm either.

Off to go get dinner out of the crock pot - made fajita soup and corn bread for dinner. After dinner I better get scrappin.
Hope you all have a good rest of your day and I'll see you all tomorrow~

Yes, the Goldwing is a motorcycle! No way I drive the Goldwing! I wouldn't be able to hold it up! I like to ride and take pictures! Yes, CVS is having problems getting Mounjaro. And Mark's doctor is on leave after having a baby, so he can't even get his prescription changed without starting all over with a new doctor! What a pain! And I'm so sorry to hear you are going to have to begin with alternate drugs! What a pain!

 

[pachimac]

OMG I started laughing as I read your post. As a fellow Cpap person for close to 10 years it doesn't mean your waayyyy chronologically challenged or fat. There are so many different style masks now you wouldn't necessarily have to have a full face mask. There are styles where you can sleep on your stomach. I had to switch to back sleeping when I had a double knee replacement and had to go to a full face mask because my mouth would drop open LOL and I'd snore with it. Using a chin strap to keep my mouth closed mad e me claustrophobic. Some fill face masks are comfier than others. My biggest complaint is c-pap hair You will feel better though, you can trust me on that.

Oh I know - that was just my fear my whole life - that because I was fat I would snore and eventually need a CPAP. My dad had one and it was because he was chronically morbidly obese. It's my issue and I have to deal with that low self esteem and body shame issues.

I was given a full face mask because I start my night breathing through my nose, but end up being a mouth breather, and nothing I've tried has helped that. The full mask is the only way it will work with my combo breathing. I don't trust those mouth tapes, so it's my only option. I have to call them today and set up the machine.