New Treatments Can Be Discouraging 😓 (2/25/18)
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- Опубликовано: 11 сен 2024
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I'm so sorry. I totally was hoping they would help. Anything you strap to your body can cause problems. At least in the beginning. Don't give up on them just yet. Wait till they get adjusted. I pray they end up helping you. Stay strong.
Actually I had a great appt at Hanger today and I am not feeling so down anymore!
That's so great to hear, so glad your appointment has helped
Thin mints go in the freezer, and the rest of the cookies go in the pantry
And my favorite is Carmel deLites, or Samoas. They’re the same cookie but have different names in different parts of the country
YOU ARE NOT A QUITER!!!!!!!!!!!!!!
I have been watching your videos fog about 8 months now and in that time you have had multiple feeding tube replacements, many IVIG treatments, a second feeding tube and countless E.R trips and hospital stays. You've taken each of those events with a courage, strength and bravery I could only hope for. So what if you do decide these AFOS aren't for you, you have more then earned the right to say no to a treatment that will cause you pain. Even though you decide not to use them now they can still be an option in the future when YOU feel your ready for it. No one should fault you for deciding to stop this treatment and NO ONE CAN EVER CALL YOU A QUITER. Stay strong Jacquie❤️
Aww thank you so much! I have a much better perspective about my AFOs now thanks to a great appt at Hanger clinic this morning. I think I just felt so discouraged yesterday because I had a lot of hope for them to work, I did not take into account that it may take time or they may be struggles in the beginning. But Hanger told me I need to give it time, let my body adjust, etc.... And everyone's time frame is different!
Please don't give up on them. All new things hurt In the beginning. Just like new exercises. Once you get them adjusted try again for short durations and the pain will subside. I'm sure your hanger people told you this too.
And I like cookies cold too! But thin mints I put in the freezer! Lol hang in there
I'm hanging in there! I had a good appt at Hangers and feel more confident, plus we adjusted the AFOs which helped (:
Chronically Jaquie - wonderful! I'm so happy that you had a great appointment.
I know how upsetting it can be when something causes pain but once you get them where they need to be you'll find that it really helps a lot.
I'm cheering for you.
Thank you for the support, it means a lot to me!
My favorite girl scout cookies is thin mints, and they are put in the freezer. So yummy! I hope you get your AFO's fixed to a comfortable level. Love you guys! Hang in there! 💪
Lots of people seem to love putting thin mints in the freezer! And my AFOs were adjusted today, which really seems to have helped (:
@Linda De Del Castillo, I love thin mints in the freezer, too! I miss them because I have Celiac disease but they were awesome!
Thin mints are so good frozen!!
Linda De Del Castillo I think this entire cookie demonstration is hysterical. I laughed and laughed. Girl Scout cookie distributed. Dealer. Same thing.😆
Melissa Sullivan you are too funny! But instead of " Chipotle is life" , thin mints in the freezer is life! Lol I can't stomach Chipotle, it's good, but my stomach issues can't handle it.
Hi Jaquie, I have scoliosis and I had to wear a back brace. I know it isn't exactly the same as your AFOs but they are made with about the same material. When I first wore my back brace, IT HURT HORRIBLY, but after a few weeks and wearing it for hours, I got used to it and four years later I am back brace free! It is going to hurt at first, but know it is for the best and it will happen. Don't get frustrated, you will push through and do so much better. When I first got my back brace the pain was so intense and I was crying and the sides of my body would be red because the plastic would rub up against my skin, but your body will always adjust. In the end, I am so happy I wore my brace and stuck through it because I got past the pain for the best results. Btw Jaquie, maybe wear long and soft socks, if possible, so the AFOs aren't as uncomfortable. When I wore my back brace I had a undershirt I would wear to try and prevent the uncomfortable pains that can come with wearing the brace and it was a HUGE help. Just stick through it because in the end the results will be amazing. Things like this will always take some getting used to.
I only buy Thin Mints, but I keep them in the freezer! I don't know why but they seem so much better when they're nice and cold.
Lol a lot of people like it in the freezer and I had no idea!
For me it makes the mint taste more strong
I wanted to say I'm way PROUD OF YOU for being a good friend to Janiece and sharing with her some of your experiences. Such an awesome friend. I always remember my best bud who also had chronic illnesses. Its great to have someone who understands.
As being a girl scout for the 12 years you can be in it, as well as being the daughter of my Girl Scout council's cookie leader I can let you know about why the cookies look different. There are two bakeries for Girl Scouts. The ABC Bakery and the Little Brownie bakery. The US is divided between the bakeries and each bakery has their own cookies and names. The main ones: trefoils, tagalongs, samoas, and a couple others are exactly the same cookie but have different names. Then the lemon cookies and Smores are different between bakeries. One of them may also not carry the Thanks-a-lots. It just depends on your area.
When I was first diagnosed with Sleep Apnea and told I needed to use a C-pap, I was glad to have a solution. When my machine was delivered, I was so happy! Well until the third or fourth night. I felt like I was being smothered, but I used it anyway. That next morning when I woke up, my face hurt and it felt like one giant booger! I called the respitory therapist, and he had me try different masks until I found one I liked. That was in 1998, and now I love my machine and mask and never go anywhere overnight without it! It took time, but I'm glad I didn't give up, so you don't give up either.
I had AFOs for years as a kid and i hated every minute of it. no matter how many times i got them refitted or adjusted, they were so ridiculously painful. i now use braces made of carbon fiber and i love them, they don’t hurt at all and they’re so helpful, i’ve had them for so long that i can’t walk in my shoes without them. don’t feel bad for not liking your AFOs, if they’re doing more harm than good you’re not a quitter for stopping
Thank you for this! It honestly helps me feel better about things. I also feel more confident after going for my follow up appt this morning. (: Also super glad you found something that works for you!
I know what you mean about new devices and treatments! I just started using a CPAP for sleep apnea less than two weeks ago. It’s been awful! That thing wakes me up more than I ever woke myself up, I think. I’ve been so miserable. I was about to call the sleep lab doctor today to tell her “I quit!” but then a rep from the device provider called me, and she was able to help me make some adjustments over the phone. We increased the humidity and decreased the pressure, and changed the part of the mask that fits on my nose to a smaller size. She said she will call me back in a few days. So, I feel more optimistic now. Wish me luck, and I wish you luck, too. Don’t give up just yet.
Everyone's bodies take time to adjust different. I struggle with back pain due to muscle weakness and I got some custom insoles for my shoes and it honestly took more than a month for me to get used the them. Still to this day, more than 3 years later, my body has days where I am not comfortable in the shoes.
You still have to do what is best for you and we are all here supporting you and praying for you!
I’m sorry your AFOs are hurting you. You are not alone in being frustrated with treatments and you are so strong! I really hope the appointment and adjustments help. I had to get quite a few before my AFOs were comfortable, and not every treatment works for everyone. Hope you feel more comfortable with them soon!
Nobody would ever call YOU a quitter. You are immeasurably brave and courageous. I hope the doctors find a solution to how you can get benefits from this tool.
OMG, Janeice!!! I can picture your pantry and then looking at that box of cookies!!!
NEVER LET PAUL SEE THEM.
He'd do it. You know he would!!!
Lol Paul has a bad habit of eating Janiece's cookies
Chronically Jaquie I figured, 😜, but I was also referring to Janeice's perfectly ordered pantry!!!
I'm sorry you're feeling discouraged about your AFOs :(. I know how it is first hand when something is causing you pain for a while until you find what you need to help you. Hopefully once you get the adjustments that you need with your braces, it'll be a lot easier to wear on your feet. Don't give up and keep finding solutions like you always do, Jaquie! :) I'll be keeping you in my thoughts and cheering you on!
When I got my AFOs I was put into a PT program at a rehab clinic. We worked on just breaking in the AFOs and walking correctly in them. I had to go in several times to have mine adjusted and even had to have them remade a couple of time because they were not the correct kind for my needs. I went from open hinges on both legs to closed hinges (just like yours) with the stop on them to the closed hinge on the left leg and a absolutely no hinge on the right leg. I also have to go in every 6 months or so to have adjustments made to make sure I don’t get pressure sores or anything like that. They take work and aren’t for everyone so if you feel like you’ve given it a good go but don’t feel like they are working for you, you aren’t a failure it just means they aren’t a good tool for you. Hugs.
Thank you
Chronically Jaquie I am glad you are feeling better about them after having them adjusted, don’t be afraid to call Hangers and tell them they need adjusted more, the worst thing you can do is wear them and get pressure sores that don’t go away. Hang in there and do what you know is best for your body.
You only fail if you never try
This is a good point ;D
I think many braces and supports hurt in the beginning since they're aligning something that's been unstable for such a long time. My neck is unstable and when I got my neck brace it was super painful because it was literally realigning my neck back to where it was supposed to be, but now I put it on when I'm having pain and it helps super quickly and it actually feels really nice! Hang in there!
I connect with what you’re saying about new treatment so much right now. I am doing a new therapy for my sensory processing disorder, but it is affecting muscle problems I have. I don’t know if it is worth going through all of the muscle problems and whether they will resolve themselves throughout the therapy or not. And I am not even sure the other therapy is going to work even though I was very hopeful at the beginning. It can be really challenging to know when to push yourself through a rough situation to get to a better outcome and went to listen to your body and take a step back and rethink your therapy and treatment options.
Don’t be too hard on yourself girl! You’re doing your best!! 💗 Don’t be frustrated if they don’t work! 👟
I'm so sorry the braces are causing so much pain. What a bummer. As a fellow EDSer I can relate!
Something I have learned with braces is that even though the AFOs are what your body needs, maybe now isn't the right time to implement them. It happened to me with my shoe braces--when wearing them, I was more stable and tripped less, but after a few months they started causing so much back pain it wasn't worth it. My therapist advised me to just stop wearing them for awhile and go back only when my body was ready for that kind of change.
I don't know if that helps but hopefully it is encouraging!
I‘m sorry for you, but don’t give up!
It’s like riding a horse after a looong break. Your body isn‘t used to the movement and so you‘re also getting a lot of back and neck pain, because you have not been in a good posture in a while. But this time will pass and you will be better, even it‘s hard work.
Praying u can get some answers at Hanger Clinic tomorrow. I know how hard it can be when you’re putting so much faith in a new treatment and it starts to frustrate u! You are NOT, you are NEVER a failure. You’re just facing a struggle with a new tool and that’s ok. You will figure this out and find what works for u 😉💪
Please don't feel bad about the way you are feeling about your AFO's it's totally understandable the way you feel I felt like that when I first got mine too. Don't give up I know you're going to get them adjusted and if this adjustment doesn't work then you get them adjusted again and keep getting them adjusted until they work for you that's okay! When I first got mine I had to go back for adjustments a few times also each time I got them adjusted or needed them adjusted I was told not to wear them until I get them adjusted again because if they rub or make sores or hurt of course they're going to hurt until you get that spot adjusted so it doesn't make sense to keep wearing them when they are like that it's okay to get them adjusted. you are amazing you have helped me so much with many different things.
I don't blame you for feeling discouraged...often, I have trouble just getting used to my new eyeglass prescription! Of course anything that changes your gait or posture can very well put new stressors on your body and hence, new pressure and new pain. Great huh? But it's still very early in the adjustment process. My brother had many, many adjustments and still needs ongoing ones. Because of his blister he can't wear his orthotics right now, and he really misses them. Anyway I talked to him about how he did when he started out. He did size up his shoe by 1/2 size and also, keeps the orthotics in his shoes when putting them on. He finds that shoes that are too wide do NOT work well. So anything is possible and wishing you luck Jaquie.
You are so strong! Thank you so much for your videos! I look forward to them every day and they make me feel less alone! Thanks for showing me how strong I can be!
It’s so frustrating when you finally think you’ve got something figured out and then turns out you’re just left with more questions and confusion and pain than before.
I know it's a little different, but I got orthotics for my shoes after having very bad plantar fasciitis. It hurt a lot at the beginning, so the pediatrist scaled me back to 2 hours per day, and I slowly worked my way back up. Now I can't live without them. The adjustment period is tough, but you will push through like you always do!!
I like to put my girl scout cookies in my mouth lol. I can only have the gluten free ones (I'm so glad they are widely available now!), which are shortbread with toffee bits. I feel like the toffee would get weird in the fridge, but they don't stick around long enough to really be stored anywhere lol.
Having a rough couple days! Regular people sick plus chronic illness! You're videos have been making my day so much better! Thank you :)
Gosh it sucks to be regular sick on top of it all, feel better!
My newest pair of afos are very different from my previous pairs. It took about a month, and I had pain and blisters and limping because I wasn’t used to them. Now here I am a few months later and I’m perfectly fine and can go with them all day. Like they can work, but these ones may not be just right for you, but there are so many options and things to try. Keep trying girl.
Hey 🙄 I'm so sorry to see that you are getting frustrated with your afos. Everything you are saying I remember experiencing when I first got mine. It takes a lot of adjustment but is totally worth it in the end. Now when I am not wearing my braces on I have many dislocations and publications, as well as very bad pain in my ankles. My issues are slightly different in that I have bilateral ankle, knee, and hip instability. I rely on the braced to align my entire body. Try and keep a schedule of when u wear them and for how long. That way you can see your progress as you wear them each day. The orthosist will make adjustments as your body adjusts to them. It's tough in the beginning but stay strong so that you can benefit from them. Feel free to DM me with any questions or advice 🤗
Literally feel so much better knowing that you had the same issues! I went to Hangers today and they helped me a lot, both with my concerns/frustrations and adjusting the AFOs. I am going back to 15 mins a day and progressing slowly as not to cause too much pain. Not feeling so defeated anymore!
Chronically Jaquie yay! I'm happy that my experience and the people at Hanger clinic helped to ease your concerns. Like everything else with this illness...one day at a time. It's ok to feel frustrated...its a frustrating situation. Believe me...I have my days when I just cry...but the next day I try all over again. The braces require lots of patience...dont be so hard on yourself. 🙃👍👍👍
Jaquie is the type of person to put bread in the fridge, too!
Anyways, just remember that your feelings are valid. It's okay to feel frustrated and want to throw things out that don't work as you hoped. But you're strong and will get through all obstacles!
my dad's reason for needing an AFO is very different, but he's had them for a little bit now and it still causes a pain after wearing it for a while. I think its just something your body needs to get used to, its like wearing a cast 24/7, so there is going to be pain in the beginning, especially since you haven't been walking much and its adjusting your posture. I know how discouraging new treatments can be and how hard the drawbacks from them are, but I think this is one you should try to stick out, maybe when you get them readjusted it wont be as bad. I'd also suggest only wearing them for a specific amount of time, and alternating days or every 3 days and slowly start building up to using them more regularly. but I think wearing them around the house might also be a good idea, maybe then your body can get used to it being on but you're not doing as much to create that pain. that's also something my dad did because he was home most of the time until recently. and maybe until they start working you could pre medicate with a painkiller before using them?
I hope they start helping and hurting less soon!
Boy, we are so behind in the times here in Canada! As far as I have ever seen, we only get the traditional chocolate/vanilla cookies and the chocolate mint wafer cookies. I would LOVE to try the S'mores and the Thanks A Lot. Those both sound like they'd be right up my alley! Jaquie, as for feeling pressure to succeed with your AFO's, please don't let the fact that you have this channel put that kind of stress on you. It is what it is and like you said, everyone is different. The important, beneficial thing for your channel is that you got to try them. Perhaps they still will work for you, and I hope they do, but if not it is no fault of yours! The last thing any of us with chronic pain need is MORE pain! It is one thing to have a minor/temporary flare up when trying a new procedure/therapy, etc., but for it to take 3 days for you to recover from wearing them for 30 min a day is too much! I really hope the Hangar (sp?) Clinic is able to help you or at least give you some guidelines and encouraging suggestions. Take it one (braced or non-braced) step at a time! xox Heather🇨🇦
Don't give up! Your body will adjust. Like Judd says- if you can't change your situation, change your attitude :) I love thin mints in the freezer! Also I saw Nike has AFO friendly shoes called "FlyEase". They don't come in pink, but might help with the tightness since they are made for AFOs. Keep on keeping on Jacquie!
My favorite GS cookies are the lemonades. We keep them in the pantry unless we know we won't be eating them for a few months, then they go in the freezer.
Also I have an appointment with the GI tomorrow to follow up on my colonoscopy & endoscopy & new medication, which felt like it was working great until about 5days ago. Hopefully they'll listen to me more than last time. Thanks for inspiring me to get answers. I hope you're AFOs can be adjusted so they work well for you or that the doctors provide you with a better for you alternative!
Hey Jaquie, I know this is a few months old but I just wanted to let you know how GS cookies work - there are 2 makers (Little Brownie and ABC) and each of them produce some of the same cookies (but with different names) and some different cookies. That's what's causing the discrepancy. Next year during cookie sales if you google girl scout cookies you can find which councils are selling which kinds of cookies and then find the ones you want!!!!! Also, Thin Mints go in the freezer :) then they last forever!!!!
Thin mints kept in the fridge are the BEST.
Hope that Hanger clinic is able to help you out with the afos, or possibly find you another option if these won't work out for you.
I actually had a great appt there this morning and I am feeling much more hopeful (:
I started with one AFO and then slowly built up the time with that one before adding in the second AFO. I am not sure if that would help you, but it allows your body time to adjust to one before adding in both.
That was one suggestion by my PT but my orthotist today said use both but cut to 15 mins a day instead of 30 (:
Keep moving forward! It will take time. I know when I started using orthotics it took weeks for my body to get used to them. Everything ached. I didn’t realize how much your feet affect your whole body. Keep pushing through and I’m sure the end results will be worth it. I would try lambs wool or a second skin to protect your toes or any other sensitive areas. No only are your legs getting used to the AFOs but they are also getting used to new shoes. Keep your head up :)
girl scout cookies get stored in the freezer to keep them fresh and you pull them out when you want them. they are delicious frozen or thawed.
Love you girl. Remember to stay positive and to not give up. Your an amazing woman with everything you go through and have been. I may not have the exact same things as you but have similar and a ton of medical issues as well as diseases. You are a worrier. Never forget that. By the way my favorite Girl Scout Cookies 🍪 are thin mints and samoas. Put the thin mints in the freezer, yum! And put the samoas in the fridge, yummy. I love my Girl Scout cookies cold. lol ❤️
We used to have the Roomba pet and at that time, we only had 3 and at the end 4 dogs (all were long haired dogs) (now we have 5). The Roomba survived not even a full year at our house because he would burn itself because of the hair... so it is just a warning if you have 2 longhair dogs have for a long time, clean out the hair between its brushes as much as possible to prevent its motor to be able to burn itself 😉
Maybe try lambswool....dancers use it to protect their toes...I've used it for years for toe dancing. It will help with the pressure points.
Prescot Love you have to be careful with additional padding. It can change your stride. She might have to get adjusted with the new padding in.
Prescot Love Also, many people are allergic to wool. I wouldn't be surprised if Jaquie was too!
My favorite kind of girl scout cookies are thin mints and peanut butter patties, with the thin mints I like to put them in the freezer until I'm ready to eat them and then move them to the fridge, with the peanut butter ones I like to put them in the fridge just enough to get a little cool before eating them. I used to be in girl scouts so I remember how fun it was 😊
Hey Jacquie ! Love your videos
I've already watched your next video posted today talking about your AFOs, but just as another possibility you might be also struggling to readjust to your new shoes
I've struggled with shoes a lot since I have such a high arch and a tendency to want to roll them in and I've had to try a ton of shoes. Eventually I ended up seeking out a shoe/foot specialist and they really helped me find solutions that helped me. Keep making your videos and inspiring all of your viewers girl! Love it!
Hello Jaquie, First, i have to say you totally shocked me today, I NEVER knew that the girl scout cookies in US where store brought, over here in the UK if scouts, guides etc have cookies (or Biscuits as we call them) to sell, they Make them to sell. So that was very interesting and shocking all at the same time. Regarding your AFO's Please don't give up on them. I know they are painful when you first get them. It takes time for your body to get use to them. You inperticuller it will take longer as you have more health conditions to fight with to. If your finding it to painful try bring down the 30 mins of wearing them down to 10 mins for now, 10 mins a day for a week see how that feels with out adding extra time, then if you Go OK with that add another 5 mins a day. Baby steps is always best, take it slowly let your body adjust. Remember your eyes see the AFO's adjusting your feet and Ankles your Body feels it adjusting Everything. Which is what they are doing and designed to do. I can't tell you that its not going to be a long road because it will. Even when you get them adjusted or new ones you will have to get use to them all over again. You said yourself today what the benefits of them are so i don't need to remind you of those. I am sure you will see that they out way the fight through getting use to them. Stay strong and fight through. You fought through more than AFO's they are just a dip in the pavement or as you all over the ocean would say Sidewalk. Good luck with them. Best wishes. Stacey K @RawAbilityLife
Girl scout cookies don't last long enough in my house to have to worry about where to keep them. Savannah's (I think that's what they are called, they are lemon flavored with powdered sugar), are my favorite, but of course I still like the thin mints, and like the new Smores ones. Hope things work out for you. Take care!
I feel like part of the issue with your AFOs might be due to the fact that when you stand your feet spread out a little (think of how shoes feel different sitting vs standing or walking) and your feet were moulded when you were sitting, so maybe with more adjustment they’ll fit better, and once they fit better they’ll stop putting pressure in weird places and making you walk funny. I really hope adjusting them will be as beneficial as you hoped they would be! 🤞🏻 but even if they aren’t, you’re not a quitter, you tried and discovered they wouldn’t work for you, so think of it like an experiment! (you’re a scientist not a quitter!) 😁
Don't forget the you also have cut and healing abdomen muscles. This added with the new AFO's correcting your posture. Is a ton for anyone's body. It took me probably a year to feel like my huge knee braces helped more then they hurt. It does take time and for some it takes a ton of time. You do what's best for you, just wanted to let you know my journey with braces.
You are not failing jaquie okay? This takes time. It happens to a lot of people. It will get better. It's okay to get discouraged but keep your hopes up! You're doing really well! Remember how ivig was really hard for you? But then now you barely even get a reaction? It's just like that, be patient! Your viewers believe in youuu
As a Girl Scout, I love all the cookies but have a special place in my heart for Peanut Butter Sandwiches. My troop is located in Orlando but a member’s brother was down in Davenport and was able to pick up some of the other bakers cookies. We tried the S’mores and they were so good! The thin mints from over there are better too.
Sorry you were so frustrated with it. I have to wear an occlusal guard in my mouth for clenching. It was tough (hurt) wearing it at first, but then it started to help. Reading some of your replies...glad you had a good appt today at the clinic. As for the cookies. I don't eat any cold except for one....THIN MINTS!!! Those are my favorite Girl Scout cookies and I freeze those and eat them frozen. YUM!!!!
Yeah it seems that a lot of new things take some getting used to! And a lot of people seem to like those frozen lol :P
I have a friend who crumples up the frozen Thin Mints on ice cream.
I haven't seen the S'Mores cookies. I was going to buy some cookies but didn't get around to it and not sure they are still selling them. My favorites have been the Samoas, Tagalongs, and Thin Mints. Love them from the freezer!
We have five big dogs. I threatened to shave them a few weeks ago and take all the shedded hair and knit them sweaters to keep them warm when it's cold. That'll give me a reprieve from the shedding for a little while, lol.
Good luck with the AFOs being adjusted at the clinic. I must have walked 3-4 miles yesterday at my granddaughter's cheer competition. My left foot dragged a few times and my tennis shoe stuck on the tile flooring. Was scary but had my cane so I didn't trip too badly, thank goodness! Walked three blocks from the hotel to the convention center, walked the length of it several times, then back to the hotel. Did get to sit for about 1 1/2 hours to watch her team compete and the award ceremony. My shins, calves, and ankles hurt today. Taking my pain meds and walking the dogs is helping them from stiffening up too much. Cramped everytime I moved my legs last night. Ugh!!
Have a great week on your adventures, can't wait to see them!
Prayers for the new treatments Jaq & Thin Mints & I keep them in the freezer!
I am so sorry that you are discouraged right now, i am praying that you find an answer soon. Don't feel like a quiter at least you tried, like you said not all treatments work for everyone. If they are causing more problems then maybe they are not right for you. Trial and error. You will find a treatment that works and when you do i will be here to celebrate with you. Keep your head up and remember we all love you like family.
Thank you for your support! I think I hit a low point with the AFOs yesterday. At my follow up we adjusted them, and I talked to my orthotist and all my frustrations. I feel SO much better. It is a process and I really need to give my body time to adjust. So I am feeling more confident and ready to give it another go.
You give me so much hope with my illnesses, i can't tell you what that means to me. My problems are not as severe as yours but like you say not all treatments are for everyone. My neurologist is having issues finding a treatment to control my epilepsy and after three years i am beginning to wander if my seizures will ever be under control. At least i have my service dog. New to the service dog community and not sure how it works yet so if you have any advice on where i can get her a vest with pouches that would be great i can't find one that will hold meds and emergency information that is lime green
I was a Girl Scout, and years ago the Thanks a Lot were called All Abouts and they were my favorite! I live in South Florida and the s'more cookies down here are the same as the ones that they sell in Orlando and they're my new favorite (they still haven't brought back the all abouts/ thanks a lot in my area).
Hey jaquie, try to wear them for way shorter times. Start with like 5 minutes a day and just sit around in them for the first little bit. I understand that sometimes things can be extremely frustrating and even painful. Give that a try and then transition to just standing before walking. It might make the process extremely long, but might your body more time to adjust. Stay strong and hang in there!! =)
Funny story...one year our communication was lacking. He bought some at work, I bought some at work and at church, then he bought from a neighbor kid who knocked on our door. We ended up with 17 boxes of cookies!!! Needless to say they all went in our freezer and the two of us had cookies all year! LOL
You will feel like this for a while with AFO's, my 10 year old nephew is on his 3rd pair, he havs dropped feet due to his C.P. and yes you will have new pain for a while it could be months knowing your chronic illnesses. and it is the nike shoes nike's are not made for AFO's in any way, you'll need a shoe with wider tongue like PLAE, Dr.Comdont, FREEDOM and etc. These shoes also can be opened wider then a normal shoe can be. and start wearing then at 15 mins for a few days then 1 day break, then move up 30 mins repeat until your body can handle all day.. Google Adult AFO Shoes
Thank you so much for the input! It helps to hear from others who also needed to adjust over time. I had my appt at hanger clinic today and feel much better, not as frustrated. It will definitely take time.
Chronically Jaquie Hang in there you will over come this as well.
Chronically Jaquie OH yeah, insurance companies will not inform you about these kind of shoes we found this out the hard way with my nephew. luckily we had DHS on our side and helped us along with us researching online and bringing in the info to the doctors and they wrote up the prescribtions for the shoes
Chronically Jaquie and yes you can get a prescribtions for AFO shoes I don't know about in your state
I haven't actually gotten my girl scout cookies yet even though we ordered😢😢😢😢😢😢😢😭😢😢 but usually we keep them in the fridge but I will try to keep them in the fridge. I never thought about the fridge! Thanks! You are amazing even through pain! You are NOT a quitter and you are doing the best you can. Keep going!
Edit: my favorite girl scout cookie is toffee tastic. Have you ever tried it? I just realized that I'm early for once! Snow day at school! (the actual reason is ice so I feel it should be called an ice day but it's called a snow day for some reason)
I have only tried the chocolate ones because I know I only like chocolate cookies lol
Chronically Jaquie oh lol I don't like chocolate so most people think I'm crazy😂
My favorite Girl Scout cookies are Samoas and Trefoils. Unfortunately, I’m no longer able to eat them. As to where to keep them: in the pantry or hidden in a drawer!!!
I’m sorry you are struggling with your AFOs. I went on Friday to try some that had been ordered for me. My orthotist is ordering a different one in to see if it will fit the shape of my foot bones better. I hope the adjustment went well and that you will be able to use this tool.
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I am a Thin Mints girl scouts cookie kinda gal! So sorry your AFOs are frustrating you. My hubby has a lot of physical and emotional illnesses he battles, and he is also VERY VERY chemically sensitive to meds, so new meds can take weeks for him to adjust to only to find out they don't work, and then he has to start the process of trying again with another medication, etc, etc. It gets so frustrating, exasperating and discouraging. So I understand a little of what you're going through. It's okay to feel the way you do, and it's okay if certain treatments don't work out and you have to quit. That in no way makes you a failure. Just do your best. That is all we as humans can do.
Thank you for sharing that with me! Even though it is not exactly the same, it makes me feel better knowing we have similar battles. You are right, we are not failing as long as we are trying our best! I had my appt at Hangers this morning and thankfully I am feeling much better. I just did not expect things to be such a long process of adjustment. But now I am motivated to keep going, slowly but surely!
Chronically Jaquie hooray Jaquie!! And can I just say how close you are to 100k subscribers! You inspire so many of us to "keep moving forward"!!! 💖💖💖💖💖
The cookies are distributed by region. For example grater LA has savanna smiles and eastern mass only has the chocolate covered smors instead of the ones that have a biscuit on it. Some of my favorites are Thin mints, lemonade and the gluten free chocolate chip ones that were sadly discontinued because they didn't sell good but they weren't on the order form
Talk with your physical therapist. They can give you exercises to strength your muscles to avoid the pain that the AFOs are causing in the beginning. Good luck!
Maybe instead of trying to walk in the AFO's you should start off wearing them for short spans (30min) when you are just standing still mostly. Like when you cook or prep for Harlow. Maybe trying to walk in them straight away is exacerbating the pain from the posture correction while you are upright
My favorite girl scout cookie is the thin mints when they are out of the freezer, yummy. I also like the lemonade and the S'mores that are in sandwich form, just had those recently and they are are really good.
Sorry your AFO are giving you such an issue, I hope once they are adjusted better they don't hurt you as much. Fingers crossed.
My favorite Girl Scout cookie has always been the thin mints. I’m personally with you Jackie I like my Girl Scout cookies in the fridge, we even store the extra ones in the freezer as well.
Now, I’m craving Girl Scout Cookies. I think checking out a New Balance store and having a fit specialist measure you and getting the AFOs adjusted will help. Ask your orthotic guy what shoe he recommends. It is hard for us EDSers to “feel” comfortable when we are put in normal alignment. The whole body is thrown off.
I keep my Girl Scout cookies in the fridge too! My fav are the thin mints. You are not a quitter! Hoping the clinic has some answers for you tomorrow ❤️
I am so sorry, Jaquie, I know how excited you were to get your AFO's. I hope that more adjustments can make them finally work for you in the end. ;0(
AFO's are supposed to hurt when you wear them because they stretch your joints,after you get them adjusted you need to just push through and wear them...but only wear them when you go out,not around the house...everyone who has these goes through this..you have what they call drop foot and in order to walk correctly you need to wear them..you will get used to them
Thanks for sharing about the foot alliances. You will decide... and we will all support you because we love you. It's good to learn with you. I just visited Hanger today. Wrist braces ... Maybe some exercise could strengthen the top lift of your foot. People sometimes temporarily loose that ability. Don't you hope you can get it back... I pray you can too...
Savannah smiles are my favorite girl scout cookies. They had them a long time ago when I was little and I loved them. Then they got rid of them and now they're back!!! I love them so much
Acknowledging our situations may be different, my first AFO was similar to yours with the Velcro in front. That AFO I found not to be stable and broke often. My current AFO has a wide solid band in the front with the Velcro in the back. This is working much better for me and has not broken in four years. I do not have the hinges at the ankle, found they do not provide enough support for my disability. I have West Nile paralysis on the right side, with weakness up to my waist and the ankle area is the most weak. I love your spirit, and your videos. Thanks.
That is a really interesting set up! Granted I know nothing else as these are my first pair, but they really seem to do what I need. The problem is my body adjusting to them... But I had a great appt at Hangers today and I am feeling a lot more confident about things (:
Cookies...very short term in fridge and longer term (over a few days) in the freezer. Freezing preserves their quality whereas putting in fridge dries them out.
I put Girl Scout cookies in the freezer actually! I hope the frustration goes down a bit after your follow up. New treatments can definitely be frustrating and have an adjustment period for sure. Love from another spoonie in Oregon 💕
The follow up today has definitely helped my frustrations (:
Sorry you feel frustrated with your AFO's. Just remember it may take several adjustments to get them were you need them to be.
You can do it Jacqui, you're doing great!
It took me a long time to adjust to my AFOs, but now I can't walk w/o them. I hope you're able to push through the adjustment period. Though definitely talk to your doctor/Hangar if it's causing you this much discomfort.
My favorite Girlscout cookies are the tagalongs! (I think they are Judds favorite too)
Also, I would like to say, don't put some much pressure on the AFOs working for you. If they don't work they don't work. I have a lazy eye (which is mostly fixed now) that led to half blindness in my left eye (its a long story, anyway) We kept trying eyepaches, and for every weekend, I had to wear them and everything was blurry. I just was soo frustrated. I wanted it to work. But, I didn't work, so we ended up doing something else. So, don't worry!
My favorites are the Tagalongs and I love them from the pantry! I was so sad when I learned that most Girl Scout troops sell them as “Peanut butter patties”. They’ll always be Tagalongs to me!!!
Who keeps GS cookies around long enough to think about storing them? 😜
Even if the AFO's don't work, at least you can tell yourself that you tried. Trying something and having it not work is better than not trying at all. Unfortunately, I'm not one of those people who keeps cookies in the fridge. :( Haha. My favorites are Thanks-A-Lot and Lemonades!
In glad y'all found out about the cookies. I comment on the first video you were talking about it but I didn't think you would see it. Any how, when I was a girl scout my favorite was the dosidoes (peanut better sandwich cookies) because I thought they were very under rated. When your a girl scout your favorite cookie is whatever one you need to sell. Now I love thin mints and tag alongs
dear Jaquie, the more hope yoou put into a new treatment, the more discouraged you are, when it's not working in the way you would like it! But remember your IVIG treatments: your side effects got lesser from one treatment to the next one! Maybe this will happen with these walkingaides too?!? Don't give up. keep moving forward is what you say, so try and do the best with all the help you can get! thinking of you! Britta
I appreciate your support! You are so right, I put SO much hope into these and really did not consider the fact that they may take time, may not work right away, etc. I'm not giving up though! I had my appt at Hanger today and I am feeling much better. (: It will just take time and patience.
Jaquie, I am glad you had a good appt at Hanger clinic and that they could help to adjust them for a better fit!
Just be patient and try for short time every day and stop, when you are feeling uncomfortable!
When I had to start balance and coordinationtraining i wanted to be the best and wanted improvement NOW. But, as we all know this takes its time and now, as I am doing this training every monday morning at my PT for the past four months I finally get some little improvement; noticeable for me, not for others, by the way. thinking of you, having you and your family in my prayers! Britta
Classic thin mints are my favorite
No, Jaquie! I told my Hanger guy, about your situation, and he said that your adjustments should have been made better, the first day you got them. He was mortified, that they didn't fit them to you properly, in the first place! He said that he thinks that the cast they made of your feet/legs, was done wrong, to begin with. He said that you should not be having pain, or pressure with them, and that this is NOT you. He was honestly embarrassed that the company he works for, would do such a poor job, at fitting you, for your AFO's! So, don't give up, Hun! Really... they may just have to start again. And hopefully, they will get them right, the second time around. But, yeah... he said that he honestly thinks that the person who casted you, did a poor job, and that if he had done it, that they wouldn't be giving you so many problems. Hang in there, Darlin'! ((Hugs)) & Spoons
Thin mints so in the freezer, ones with chocolate coating go in fridge if it's warm in the house otherwise the pantry. My mom keeps all her cookies in the fridge minus thin mints which go into the freezer as well.
To answer the cookie question; for me:
Thank-a-Lot, Thin Mints and S’Mores in the fridge. The rest on the counter. Haha. Hope things get better with your AFOs after some adjustments! Prayers for that, specifically.
Favorite girl scout cookie EASILY Tag-a-Longs!! And i keep them just at room temp because i like the soft chocolate!!
The thing is that afo ‘s are a new thing to you. And they likely need adjusting by the technician. I wish you the best of luck. Don’t let the tech leave the encounter tomorrow until you are satisfied.
You are 100% right, we did adjust them today and things already feel better. We also talked about my concerns and I am feeling more at ease. The adjustments were needed but I also have to give my body time. Starting with 15 minutes a day and progressing slowly!
It takes a long tome for the AFO’s to work 😭 when i got mine for my right leg i had to get them adjusted 4 times and it took 4 or 5 weeks to get use to walking in a plastic “boot” and the ankle on mine doesnt move like urs. Mine is literally like a cast dont get to frustrated! It gets better
The afo's are difficult. But, truthfully, they are cumbersome, but keep trying. It will be hard to choose the afo's vs. the wheelchairs. But, your young, walking will help tremendously. You know I adore you but, you should listen to yourself. 'My spine and neck..is normal. But, they hurt". Get to the Hangar clinic and get them adjusted. They will help you. Btw, keep girlscout cookies...in the fridge. Love you!
P.S. Please tell us, it's not Judd your having family trouble with?
wait until he makes some more adjustments please. Aside from that, almost anything that has to do with straightening your posture is really going to be painful for a while. Be kind to yourself.......your posture didn't get that way overnight, so it certainly won't fix it in a week or two. our bodies have become "comfortable" with being messed up, it has to re-learn what a normal posture is. Hang in there and wait until you see them on Monday.
I hope things will get better
Harlow and orion playing at times look like they could be siblings