You could try keeping one of those little cake icing tubes on hand for your super low sugar times like this one. Especially if you can't eat or drink anything, Peter can put it under your tongue and it will dissolve quickly. That's a school nurse tip from my mom. Cheering on from Chicago!
I can feel it when it is down to 80 and am out of it when it gets down in the 40's. With your health probably makes you feel worse. I'm so sorry for all that you go through! Prayers!!
Sweetie, (I'm 61 so I can call you sweetie) I am sorry there's always something you have to deal with physically. I'm an asthmatic, have lyme disease, made it through cancer and open heart surgery and I don't have to deal with things every day like you do!! I don't even know you two but I am so proud of you for the way you maneuver through life. And sweetie Peter, you are one awesome husband -- and speaker - and in my heart I support both of you. God is sooooo good and I can tell that because the two of you really reflect Him.
Very scary low reading. My husband spaced out and was incoherent. I took his BG and it was 31. I called an ambulance. They said that when BG gets that low an IV is needed to raise it. His BG was 21 by the time they got here. Lucky he is still alive.
When you said you needed to bring safety pins it reminded me of that one time when peter needed one and you shouted "get the Bible!" Because you had a safety pin in there 😂😂😂
loving your tshirt today mary. when you said about your sugar levels going up makes me human again it put a song in my head. listen to human again from beauty and the beast. I think it will make you sway and put a smile on your face
yeah hun. try and grab a cheese stick or some nuts with that apple juice. it will help stabilize. chase once you get all that sugar in and nothing else you will crash again. 😟 sorry you are had such a rough day.
Mary, you are quite a brave and amazing young lady. I'm so glad to get to see you and hear your story. I get scared when you get to coughing really hard but I am glad you are here.
I've been a subbie for so long I feel as if I know you as I'm sure so many of us do. I wish you were my neighbor so I could help out when Peter is busy. I'm a Mom of 3 grown kids and just feel like a momma hen when it comes to you ❤️. Just ordered 2 t-shirts, can't wait to get them. Prayers, as always, from Houston 😘😘😘
ughhh I want nothing more than for CFF to keep doing their research and get millions and millions of dollars so amazing people like you, Mary, can live happy, healthy and pain-free lives and of course youre amazing too Peter! if every girl had a man like you, the world would be a better place!
Sounds like a rough day. But good days or bad, your videos are always a blessing. Thank you for sharing your life! Watching and loving your first vlogs too--yay Scotland! 😊
Mary and Peter: About the headaches. I have a friend who had sporadic headaches like you did. She went to a doctor who practiced Eastern medicine. He took a sample of her hair by her neckline, sent it off for analysis, and she had copper poisoning. The copper in her body was off the charts! After treatment, her headaches went away. I didn't have much in her story until I had the test done and my aluminum was high. Had treatment and I felt soooo much better. As you all know, drug testing is done with hair samples, and this is the same procedure but for different reasons, obviously. I advise anyone who has a weird or unknown diagnosis, give it a try.
I am so sorry that you felt so "weird", I know that feeling....there really is no other for that "feeling". Rest probably the best thing today? Take care sweetie. C
Just a suggestion, but could it be possible that you have your headaches due to dehydration. Cause, you burn a lot of calories by coughing, I can only imagine you lose a lot of fluids too. Sadly, throwing up makes you loose fluids too. Love!
Gio Metro, please get some help. Talk to your doctor. So glad you reached out here. I've been there. I attempted twice. I'm here for a reason and so are you. Please talk to somebody. You matter.
Hi Frey Life!! Pretty new the the channel and blown away by the light of Christ in you. Please keep bringing His Light into this world!! My kids enjoy watching you especially my son Luke. He is four and has leukemia,so he can relate to parts of CF life like having a port, loving to be snuggled in warm blankets, puking, taking pills every day, and most importantly keeping a positive attitude no matter what! Whenever we watch a new video the kids say "Hi Peter and Mary" and then immediately wait for Ollie to appear. "Ollie!!!!"
Would u not benefit from a CGM I have the Dexcom G5 and it has changed things a lot. As a lot of my hypos are when I sleep I drop to low on the Dexcom which is anything under *in the UK it's 2.2mmol/l) *which is under 39mg/ml in the US. Also the huge benefit is I have my sister and friend who 'diastalk' me and can check my BG if I'm asleep or off character . 100% recommend xxx
Mary can you ask the company who is making the T-shirts to move a little bit higher the print of the lungs, I think they kinda look like their kidneys, just giving my honest opinion also am confuse if thanks to us of the donations their have been new drugs for CF patients why those some pharmaceutics end up selling their drugs way to expensive like Kalydeco and Orkambi making the patient have a hard time to have access to them.
Just Gil x developing medication is a multilevel process. Not all steps are in the hands of the company selling it in the end, actually just a few are. In between there are a lot of scientific research labs involved, this is where the money usually goes to. They are working on finding compounds or targets that might be druggable. The latest numbers on getting a new drug on the market i have are that it takes about 12 years and will cost about 1-2 BILLION $ so a couple of hundred thousand can only get you so far. (Have benn working in cancer research for about 6 years now and 'our' drug is nowhere near being sold even though development started even before that. But I do agree with you that medication should be affordable for all!
Jack D. I believe the reason some medicines are so expensive, is because the company that makes the medicines are money hungry, it is the same as why does gas price increase in the summertime, when so many people are traveling, but lower the rest if the year, minus Christmas break. I had my medication go up from $25 out of pocket money, with insurance, to over $100. I was lucky to able to switch my medication to a less expensive version, but not everyone is that lucky to do that.
Jack D. Hey. So the money raised is going to research about CF, because there's so much they don't know. The also are working towards new medications, but those usually take quite a while to actually have because they have clinical trials on patients ect. Unfortunately I don't think the CF foundation has the direct ability to make the prices of medications lower though. But they do provide recourses to help people struggling - and donations can help extend those programs. I hope that clears things up a bit more for you Jack? And if anyone wants to correct me feel free to do so.
Jack D. They are so expensive because they cost billions of dollars to create and only a few thousands people can benefit from them. So it's that few thousands of people that has to recoup the billions invested in R&D. If they couldn't sell those drugs at a high price, they would be out of business.
When you make shakes put some oil in them to slow the metabolization. The sugar won't get high so fast. Just use high fat ice cream. Low fat the sugar will get high fast.
I was told at The Mayo Clinic to eat pack of pnb crackers to bring my blood sugar up and stabilize. I drop into the 30s at times. Always have some protein with your sugar. Then test again 15-20 minutes later to make sure you are stable. After that, I check again if I'm feeling off. Carry you glucometer and pnb crackers with you all the time, or have 2 or 3 sets so you can easily get to one no matter where you are.
Mary, I'm diabetic and I also have a chronic pain condition. On bad days, when I take extra pain medications, my blood sugar is more apt to drop. And, whenever I am cold or use ice for the pain, my body burns more calories keeping me warm, so my blood sugar can also drop from that... I wonder if that's what happened to you!... It would be nice if there were a simpler way to deal with these things, but we are wondrously made with countless ways of being, so... we just Praise the Lord and keep going, right? :-)
I have type 1 diabetes, and last fall my BG dropped to like 35 and I was alone except for my dogs. My dog (who's not even trained to alert) started attacking me and shoving her nose into my face. I then started to feel really low and then checked my BG and it was super low.. I felt like it was an out-of-body experience.. totally get the 'weird' feeling. But, when ever your BG drops, I suggest eating simple sugars and then 5-10 minutes after, have a complex carb (if appetite allows of course). The complex carb helps maintain the increase of BG. Hope the scary drops don't happen too frequently! You are an inspiration
I can relate to both of you today. I threw up chicken salad in the 4th grade. I'm now 54 and have NEVER eaten it again. I am also diabetic. Lows can be scary. My lowest was 37 in the middle of the night. Woke me up crying and confused. Fortunately, my roommate was awake and got me some OJ. I used to get 40's at work when I would get overly involved in testing my AFIS. Finally, had to set an alarm to remind me to stop and test. Now, I live alone and worry about lows. Had a 50 yesterday. Hopefully, your feeding tube will help stabilize you sugar.
Mary, glucose tablets are a huge help, please try them. It's totally normal to feel nauseous & not want to eat when your blood sugar drops. Glucose tablets can get your blood sugar up enough to get rid of that nausea so you can eat something else that will help too.
I was diagnosed with hypoglycemia in 8th grade and I keep glucose tablets with me all the time! They're just like a giant smartie and they work pretty well!
My blood sugar drops very frequently... my doctor put me on Precose. I don't know what's worse low blood sugar or the meds I take for it. My stomach doesn't handle it very well. It's scary when your blood sugar drops and nobody's home. I hope your sugar doesn't drop that low again. Praying no headaches and you have a good day tomorrow. 😊
I'm a type 2 diabetic (I was told that could happen after a few years when I had gestational diabetes during my pregnancy- 12 years ago), so when I started experiencing some symptoms, I bought a meter and started checking my blood sugars ... when I saw that I was in the 140s upon waking up pretty often and my numbers were consistently above 200 two hours after a meal, I went to my doctor and got a blood test, which came back and got me diagnosed with type 2, after getting two high fasting numbers a couple weeks apart, with an A1C of 6.6%, that was a year and a half ago. I don't take any medication for it yet, I only manage with diet and exercise so far, and I start feeling bad when I'm below 90. I can't imagine what I'd feel like at 50, I had to take insulin shots when I was pregnant, and that sort of sucked, and I had a couple lows from that and I wouldn't want to go through that again, so I'm so sorry you're dealing with that on top of everything else.
I have type 1 diabetes so I understand the feeling of a low blood sugar!! My lowest blood sugar ever was 39 and I almost passed out!! Luckily now I wear a continuous glucose monitor and it helps catch my lows sooner!
My hugs and prayers are with you Mary hoping you're feeling better today. I'm so sorry for the rough day yesterday. You are so precious to always have that that beautiful smile even on the rough days. And Peter, my hugs and support to you too for being the most loving, caring supportive husband. I have a good feeling Mary that when you get more nourishment in your body after your surgery, you will feel so much better, I'm wondering if your low body weight contributes to the lower blood sugar too. It just makes sense. Love and hugs to the 3 of you, see you tomorrow!
I've had my blood sugar drop to 30, and that's where I pass out, apparently! Fortunately, it has always happened when my husband is home, but he has had to call 911 at least 3 times because of it.
My son gets low blood sugar at times, and we have found two things. 1. He tends to get them more when he eats/drinks a lot of sugar, it seems that the sugar brings his glucose levels up, but then it also drops down quickly resulting in a crash. 2. When this happens we do use sugar / carbs to bring the glucose level up, but then a protein and fat to keep it up and level. I realize each person that is different, but thought this might help.
you mentioned scandi shakes and it reminded me that you're the reason i'm working on getting it! me and my doctors in the hospital were discussing drinks and foods i take to gain weight and i thought of your scandi shakes song and we ended up trying it and now i'm waiting for insurance to clear me being able to get it! who knew your songs would help me!:)
The superhero cape is a great idea. You might also consider a thin dowel rod or stick to make a flag to attach to your wheel chair. Might be more visible and would be fun to wave it around. 😍👍
Have you guys ever considered looking into a CGM (continuous glucose monitor)? I have a Dexcom G5 CGM, and it checks my blood sugar every 5 minutes throughout the entire day. It alerts me when my blood sugar drops too low and too high, and it helps me so, so, so much. But I'm glad you got it handled!
When my Dad used to get low, he acted drunk or started repeating himself and that is how we knew. Also got clammy and restless. Very scary that is for sure. Glad you were careful on the stairs.
I suffer with low blood sugar so I'm sure you may know this already but just in case u don't. orange juice with some sugar mixed in will shoot your sugar up fast and then eat protein to keep it up. (egg, peanuts, almonds, peanut butter, any protein etc.) I usually eat peanut butter on gramcrackers. Just a suggestion that helps me.
I'm taking Percocet right now as a post surgery pain killer (it's not really killing much pain, but I'm not in much pain so it's okay) and all it does is make me feel like my blood pressure is low all the time :( I hope you're feeling better today! Love from VA 💛
Hope your feeling better today Mary!....I wish I was in Boston....or closer...I would love to come walk and meet you guys! :) .... I'm about 7-8 hrs away....which isn't all that bad I guess.
Mary maybe you could consider seeing the eye doctor for your headaches. Perhaps your eyes play a role. My eye doctor has helped with mine as well as the chiropractor :)
I remember one time I felt super shaky, and I was confused, and slurring my words. I managed to say, "need Food!" And luckily I was able to sit. My husband took my blood sugar, and it was 32. Skittles, and a huge glass of orange juice later, I felt better. Now I carry candy with me everywhere, because being low is no joke!
Lows can be really scary, especially when you reach that point when you know you're not quite right but you also can't seem to wire your brain to help yourself, everything moves so slow in your head whereas everything around you seems to be going triple speed.... so glad you got it up ok and that you have Peter and Ollie to help look after you too x
Low blood sugar can be scary! My husband had a weird episode last year because of it (how we discovered his hypoglycemia). He was alone and super confused. He couldn't figure out how to get out of this building at his work that he had been working in for 10 years. After a eeg, we think he may have had a seizure as well (that along with the fasting blood sugar test pointed to hypo). Anyway, all folks are different but my husband's endo said for him to eat something, not drink. I had bought him juice to keep in his truck (thinking i was being a good wife!) and when he told the Dr she said he needed to eat something sweet along with some protein/fat (peanut butter, cheese, nuts). Now he keeps packets of trail mix (with raisins and chocolate chips) with him or nut type bars. I think someone mentioned something similar below... like you've said many times, all bodies are different but just wanted to throw that out there. You could mention to your Dr. I'm sure you get lots of medical advice. 😂 But it's only because we care!
As a T1D, I can tell you, the point at which someone feels extremely low, or low at all, depends on the rate you have dropped from a normal level. If it's a slow drop you might not notice until extremely low (then you feel horrible), whereas a fast initial drop will make you feel awful sometimes when you're technically within normal levels. Do you keep a glucagon kit?
Hey, Mary, I’m fairly new to your channel and know a bit about glucose levels. My paternal grandfather, who was a type II diabetic, learned that foods and drinks with a higher fat content slow down the body’s absorption of carbohydrates - I imagine that it works the same way with non-diabetics - so it’s a better idea for you to go with pure carbohydrate (and simple carbs, at that) to treat lows, rather than foods with simple carbs and fat (such as chocolate). Then, as some people have suggested, eat some complex carbs AND some protein. After simple carbs bring your glucose level back to normal, the complex carbs will help stabilize it, and the protein will help keep normal for longer. I had a friend who was diagnosed with type I diabetes in high school and she always kept Smarties candies with her to treat lows. There are glucose tablets available in drug stores, in the diabetes supply section. If you started using the glucose tablets, you could put them under your tongue so the sugar would get into your blood faster. Also helpful if you don’t feel like eating or drinking much of anything when your glucose level is low.
Get yourself some glucose tablets from the drugstore, and keep some in your purse for emergencies when you are out. I'm a type 1 diabetic and my sugar drops all the time. You chew about 4 tablets and they raise your blood sugar very quickly.
when you wake up with a screaming headache, keep an extra close eye on sugars. I have type 1 diabetes and 9/10 I went low overnight and then you're arty risk to do low throughout the day. and Peter, same thing happened to me when I was little (barfing spaghetti)...it was a long time before I could look at it again.
Hey Frey Life!! Hubby and I were looking around your online store, we were wanting T-shirts, but unfortunately there are no bigger plus size shirts for us Triple F's (Fine Fluffy Folks) Tee Hee!! Kinda bummed about it....But, as you say "Laugh everyday". So we wanted you to know you have our full support and we will continue watching you 3 everyday.Coincidentally We know your having low blood sugar issues, you should try to keep Ollie by your side as much as possible for moments just like this, just in case you faint or fall, he can alert your hubby for help; We would hate for you to fall and hurt yourself so please be kind to your body, My hubby is hypoglycemic and he bought some glucose pills at our local walmart, when his sugar drops he pops one in his mouth and it brings his sugar back up pretty quick and they come in a nifty little tube you can carry in your pocket too!! take care you guys. -Your #FaithfulFreyLifers
Btw: I forgot to mention.....How would one even go about getting a service dog? I am in the process of trying to get one only mine is for a totally different reason, My Therapist says I need one and gave me a letter to give to my doctor; But I have to admit I have no idea how to even go about this and im feeling a bit overwhelmed about it, So for those of us that need one, could you help us by giving us any tips on how to even go about the process and where to look. Because I have been researching for a couple of weeks and there are a few places I found but they are either out of state or mostly for people with neurological disabilities, could you give us some tips on how to find a service dog please? thanks
I wish you would show how bible study works- do they have to be healthy to come or do you wear a mask? Do you not show it because you don't want to interfere with your friends' privacy?
I quess they just treat it as a Church meeting and they also, don't vlog at Church. So... probably that's the same. They meet to pray and that is their main focus. Some parts of their life they should keep private :)
Great Strides Grand Rapids is having a dining event to go towards the CF Foundation here. :) We are having a 15% profit from dinner at a local pizzeria type place on Monday!
Josie Terry I'm a type 2, but get hypos thanks to taking Gliclazide to control my sugar. I know that if I break out in a sweat that I need to do something to get things back under control. It's scary if it progresses!
Oh my. Mary what you describe there sounds like depersonalization. You just made me realize that those times I had those mysterious transient episodes of depersonalization as a teen might have been low blood sugar.
Could you start going live on Instagram when you go live on Facebook? I'll be able to watch it on there. Also thank you for keeping me happy and stay positive.
Hi Mary, I have had low blood sugar too. It makes you feel uncomfortable, nauseous, shaky, rapid heart rate, sweaty and it's hard to comprehend things when you get like that, too. Because your brain needs glucose to function, it is harder to carry on a decent conversation. I tell my husband not to ask me detailed questions when I get like that. As others have mentioned, eating protein after you've eaten some sugar, is best to balance you. I usually keep candy in my night stand and in my purse for times when you can't get to something else right away. I know when I get that low, it feels like I'm floating and I also get agitated easily. So, make sure the grouchy bear gets what it needs so it can get back to loving you beary much! Ha!
I have some undiagnosed esophagus thing (possibly achalasia, I have a test for it in 2 weeks) and im on small amounts of thick liquids & applesauce, but I sometimes have episodes that are a week or 2 long where I cant eat or drink ANYTHING, and when my sugar gets low (30-40s) I get so spaced out, shaky, dizzy, etc. & it sucks. I even have a plastic tub in my shower to sit on while I shower if im feeling like that & need to shower before going to the ER.
I have diabetes due to an underlying chronic illness and have had some scary lows I think my lowest was 29 at that point I had serious symptoms but if I am in the 40-60 range I only get very sweaty (gross I know). Do you know when you are getting your feeding tube? I have a GJ tube and it has definitely saved my life. I looked up the CF walk and they are actually having one just an hour from me in Fargo ND and I am definitely going to try and get there as long as I am healthy enough at the time. Many prayers sent to you, Peter, and Oliver.
hi Mary #thefreylife ive just signed up as a V walker under mary and the boston walk. just hope people will donate. lots of love all the way from the uk xxx
Mary I have an emergency glucagon shot in case my blood sugar drops and I am not with it enough to eat or drink anything. You might want to have your doc prescribe you some so you have them just in case.
Mary, hypogylcemia can be very serious. You should keep a small amount of candy at your work station and various areas throughout the house for emergencies. You should follow with a glass of milk or spoonful of peanut butter because the protein will keep you more stable. Be sure to talk to your doctor about this. I don't mean to sound bossy, I just really care about you guys. Love and prayers to you both!
Omg! I also had a super low blood sugar on Wednesday. I was at school and started to feel a little weird but didn't think about. A little later I felt shaky and hightailed it to the nurse. I was at 32 and nearly passed out :/
you could cut around the neck of the t shirt leaving it in one piece, that way you could pop it over your head and leave it in a cape shape, that way you might not need pins, hope it helps you
I am a type 1 diabetic and I always go low at school which is bad since I'm not home and it's quite a walk to the nurse! I was 28 the other day and for some reason my Dexcom GCM monitor wasn't working to we have to treat and change my Dex in one visit to the nurse!!
I hate being shakey frm low blood sugar!! I get very bad hand tremors frm low blood sugar and hyperthyroidism and Its not fun!! it hurts and of course ppl look at me weird!! I'm sry you had such a rough time of it :( praying today was better!! 💜
You could try keeping one of those little cake icing tubes on hand for your super low sugar times like this one. Especially if you can't eat or drink anything, Peter can put it under your tongue and it will dissolve quickly. That's a school nurse tip from my mom. Cheering on from Chicago!
LoveandBeloved Too Gag. I hate those things. But I'm a diabetic and sometimes it's necessary and it's what my teachers kept on hand for me.
She really should be having dex4 tablets on hand.
I can feel it when it is down to 80 and am out of it when it gets down in the 40's. With your health probably makes you feel worse. I'm so sorry for all that you go through! Prayers!!
So excited I got my shirt in the mail today! Love it already. Thank you for spreading awareness for our disease. Breathe easy:)
Sweetie, (I'm 61 so I can call you sweetie) I am sorry there's always something you have to deal with physically. I'm an asthmatic, have lyme disease, made it through cancer and open heart surgery and I don't have to deal with things every day like you do!! I don't even know you two but I am so proud of you for the way you maneuver through life. And sweetie Peter, you are one awesome husband -- and speaker - and in my heart I support both of you. God is sooooo good and I can tell that because the two of you really reflect Him.
I got my shirt today!!!! Yeah!!!!! Super excited to wear it and share with people about the meaning!
Yay! Thanks so much for your support!
Watching the Frey life is literally the best part of my day ❤
Very scary low reading. My husband spaced out and was incoherent. I took his BG and it was 31. I called an ambulance. They said that when BG gets that low an IV is needed to raise it. His BG was 21 by the time they got here. Lucky he is still alive.
When you said you needed to bring safety pins it reminded me of that one time when peter needed one and you shouted "get the Bible!" Because you had a safety pin in there 😂😂😂
loving your tshirt today mary.
when you said about your sugar levels going up makes me human again it put a song in my head.
listen to human again from beauty and the beast. I think it will make you sway and put a smile on your face
yeah hun. try and grab a cheese stick or some nuts with that apple juice. it will help stabilize. chase once you get all that sugar in and nothing else you will crash again. 😟 sorry you are had such a rough day.
Mary, you are quite a brave and amazing young lady. I'm so glad to get to see you and hear your story. I get scared when you get to coughing really hard but I am glad you are here.
I've been a subbie for so long I feel as if I know you as I'm sure so many of us do. I wish you were my neighbor so I could help out when Peter is busy. I'm a Mom of 3 grown kids and just feel like a momma hen when it comes to you ❤️. Just ordered 2 t-shirts, can't wait to get them. Prayers, as always, from Houston 😘😘😘
April Tatum I feel the same way, I wish I was closer to help too. 😌
April Tatum I feel the same. I just want to take care of her.
Blessings, and hugs to the both of you 💕
Oh Mary cariad! I hope and pray you've had a better Thursday xxxxx
ughhh I want nothing more than for CFF to keep doing their research and get millions and millions of dollars so amazing people like you, Mary, can live happy, healthy and pain-free lives and of course youre amazing too Peter! if every girl had a man like you, the world would be a better place!
At about 5:47-5:48 It looked like Peters head let off a puff of smoke LOL
Sounds like a rough day. But good days or bad, your videos are always a blessing. Thank you for sharing your life! Watching and loving your first vlogs too--yay Scotland! 😊
Poor Mary. Sorry, you're having such a rough day. Praying for you. Happy Easter
I don't know why but i love your show. I stumbled on this while browsing through youtube. You are so inspiring and Ollie is adorable.
Peter looks so stressed
Mary and Peter: About the headaches. I have a friend who had sporadic headaches like you did. She went to a doctor who practiced Eastern medicine. He took a sample of her hair by her neckline, sent it off for analysis, and she had copper poisoning. The copper in her body was off the charts! After treatment, her headaches went away. I didn't have much in her story until I had the test done and my aluminum was high. Had treatment and I felt soooo much better. As you all know, drug testing is done with hair samples, and this is the same procedure but for different reasons, obviously. I advise anyone who has a weird or unknown diagnosis, give it a try.
I have seen some negative comments on this video and I just wanted to say I love you guys
I am so sorry that you felt so "weird", I know that feeling....there really is no other for that "feeling". Rest probably the best thing today? Take care sweetie. C
My little guy has type 1 diabetes and those lows are so tough and frightening! Have you ever thought about getting a CGM to monitor your blood sugar?
hi Mary! I don't want to be creepy at all. but I was wondering since you have to be on antibiotics so much do you ever get yeast issues?? Thanks❤❤❤
Just a suggestion, but could it be possible that you have your headaches due to dehydration. Cause, you burn a lot of calories by coughing, I can only imagine you lose a lot of fluids too. Sadly, throwing up makes you loose fluids too. Love!
This is a very valid suggestion. Because of CF's altered chloride transport, CFers tend to not feel thirst.
Gio Metro, please get some help. Talk to your doctor. So glad you reached out here. I've been there. I attempted twice. I'm here for a reason and so are you. Please talk to somebody. You matter.
Idk if anyone has suggested it yet. you can cut the back of the shirt and leave the collar part for it to go around your neck - instant cape!
eastcoastmommyblog.blogspot.ca/2014/09/no-sew-superhero-cape-and-cuffs.html?m=1
l just wanted to thank you for the cards l ordered from your online shop arriving so quickly. l am so happy with them. THANKS again.
put your plants in a big closed up clear plastic bag. It makes a humid greenhouse and they will sprout up real quick. Good luck on your gardening.
you guys are so awesome! wish so much I could go walk with all of you I'm at Bostons Childrens hospital so ill be supporting you guys from here xoxo
Hi Frey Life!! Pretty new the the channel and blown away by the light of Christ in you. Please keep bringing His Light into this world!! My kids enjoy watching you especially my son Luke. He is four and has leukemia,so he can relate to parts of CF life like having a port, loving to be snuggled in warm blankets, puking, taking pills every day, and most importantly keeping a positive attitude no matter what! Whenever we watch a new video the kids say "Hi Peter and Mary" and then immediately wait for Ollie to appear. "Ollie!!!!"
+Heather T awe! Thanks for welcoming us into your home and for being part of the frey life family!
Would u not benefit from a CGM I have the Dexcom G5 and it has changed things a lot. As a lot of my hypos are when I sleep I drop to low on the Dexcom which is anything under
*in the UK it's 2.2mmol/l)
*which is under 39mg/ml in the US. Also the huge benefit is I have my sister and friend who 'diastalk' me and can check my BG if I'm asleep or off character . 100% recommend xxx
Mary can you ask the company who is making the T-shirts to move a little bit higher the print of the lungs, I think they kinda look like their kidneys, just giving my honest opinion also am confuse if thanks to us of the donations their have been new drugs for CF patients why those some pharmaceutics end up selling their drugs way to expensive like Kalydeco and Orkambi making the patient have a hard time to have access to them.
Just Gil x developing medication is a multilevel process. Not all steps are in the hands of the company selling it in the end, actually just a few are. In between there are a lot of scientific research labs involved, this is where the money usually goes to. They are working on finding compounds or targets that might be druggable.
The latest numbers on getting a new drug on the market i have are that it takes about 12 years and will cost about 1-2 BILLION $ so a couple of hundred thousand can only get you so far. (Have benn working in cancer research for about 6 years now and 'our' drug is nowhere near being sold even though development started even before that.
But I do agree with you that medication should be affordable for all!
Jack D. I believe the reason some medicines are so expensive, is because the company that makes the medicines are money hungry, it is the same as why does gas price increase in the summertime, when so many people are traveling, but lower the rest if the year, minus Christmas break. I had my medication go up from $25 out of pocket money, with insurance, to over $100. I was lucky to able to switch my medication to a less expensive version, but not everyone is that lucky to do that.
Jack D. Hey. So the money raised is going to research about CF, because there's so much they don't know. The also are working towards new medications, but those usually take quite a while to actually have because they have clinical trials on patients ect. Unfortunately I don't think the CF foundation has the direct ability to make the prices of medications lower though. But they do provide recourses to help people struggling - and donations can help extend those programs. I hope that clears things up a bit more for you Jack? And if anyone wants to correct me feel free to do so.
Jack D. They are so expensive because they cost billions of dollars to create and only a few thousands people can benefit from them. So it's that few thousands of people that has to recoup the billions invested in R&D. If they couldn't sell those drugs at a high price, they would be out of business.
When you make shakes put some oil in them to slow the metabolization. The sugar won't get high so fast. Just use high fat ice cream. Low fat the sugar will get high fast.
I was told at The Mayo Clinic to eat pack of pnb crackers to bring my blood sugar up and stabilize. I drop into the 30s at times. Always have some protein with your sugar. Then test again 15-20 minutes later to make sure you are stable. After that, I check again if I'm feeling off. Carry you glucometer and pnb crackers with you all the time, or have 2 or 3 sets so you can easily get to one no matter where you are.
ooo my goodness I could cry! I don't know anyone else who also uses the saying ' I feel like a human again'♡
Mary, I'm diabetic and I also have a chronic pain condition. On bad days, when I take extra pain medications, my blood sugar is more apt to drop. And, whenever I am cold or use ice for the pain, my body burns more calories keeping me warm, so my blood sugar can also drop from that... I wonder if that's what happened to you!... It would be nice if there were a simpler way to deal with these things, but we are wondrously made with countless ways of being, so...
we just Praise the Lord and keep going, right?
:-)
I got my shirt today and it's perfect! Thank you, Mary and Peter!
+facemonkey13 yay! So glad! Thanks for your support!
I have type 1 diabetes, and last fall my BG dropped to like 35 and I was alone except for my dogs. My dog (who's not even trained to alert) started attacking me and shoving her nose into my face. I then started to feel really low and then checked my BG and it was super low.. I felt like it was an out-of-body experience.. totally get the 'weird' feeling. But, when ever your BG drops, I suggest eating simple sugars and then 5-10 minutes after, have a complex carb (if appetite allows of course). The complex carb helps maintain the increase of BG. Hope the scary drops don't happen too frequently! You are an inspiration
I can relate to both of you today. I threw up chicken salad in the 4th grade. I'm now 54 and have NEVER eaten it again.
I am also diabetic. Lows can be scary. My lowest was 37 in the middle of the night. Woke me up crying and confused. Fortunately, my roommate was awake and got me some OJ. I used to get 40's at work when I would get overly involved in testing my AFIS. Finally, had to set an alarm to remind me to stop and test. Now, I live alone and worry about lows. Had a 50 yesterday.
Hopefully, your feeding tube will help stabilize you sugar.
Mary, glucose tablets are a huge help, please try them. It's totally normal to feel nauseous & not want to eat when your blood sugar drops. Glucose tablets can get your blood sugar up enough to get rid of that nausea so you can eat something else that will help too.
I was diagnosed with hypoglycemia in 8th grade and I keep glucose tablets with me all the time! They're just like a giant smartie and they work pretty well!
Dear Mary, you haven't had a good day at all. Definitely understand research is vital. You two are so so amazing. Love Ollie ! :) :)
My blood sugar drops very frequently... my doctor put me on Precose. I don't know what's worse low blood sugar or the meds I take for it. My stomach doesn't handle it very well. It's scary when your blood sugar drops and nobody's home. I hope your sugar doesn't drop that low again. Praying no headaches and you have a good day tomorrow. 😊
A tip for your plants. Cover them with plastic wrap until they sprout. It will act like a mini. Greenhouse and help keep them moist.
I'm a type 2 diabetic (I was told that could happen after a few years when I had gestational diabetes during my pregnancy- 12 years ago), so when I started experiencing some symptoms, I bought a meter and started checking my blood sugars ... when I saw that I was in the 140s upon waking up pretty often and my numbers were consistently above 200 two hours after a meal, I went to my doctor and got a blood test, which came back and got me diagnosed with type 2, after getting two high fasting numbers a couple weeks apart, with an A1C of 6.6%, that was a year and a half ago. I don't take any medication for it yet, I only manage with diet and exercise so far, and I start feeling bad when I'm below 90. I can't imagine what I'd feel like at 50, I had to take insulin shots when I was pregnant, and that sort of sucked, and I had a couple lows from that and I wouldn't want to go through that again, so I'm so sorry you're dealing with that on top of everything else.
I have type 1 diabetes so I understand the feeling of a low blood sugar!! My lowest blood sugar ever was 39 and I almost passed out!! Luckily now I wear a continuous glucose monitor and it helps catch my lows sooner!
Thinking of you Mary. Hope you are feeling better. 🙏💜
My hugs and prayers are with you Mary hoping you're feeling better today. I'm so sorry for the rough day yesterday. You are so precious to always have that that beautiful smile even on the rough days. And Peter, my hugs and support to you too for being the most loving, caring supportive husband. I have a good feeling Mary that when you get more nourishment in your body after your surgery, you will feel so much better, I'm wondering if your low body weight contributes to the lower blood sugar too. It just makes sense. Love and hugs to the 3 of you, see you tomorrow!
I've had my blood sugar drop to 30, and that's where I pass out, apparently! Fortunately, it has always happened when my husband is home, but he has had to call 911 at least 3 times because of it.
My son gets low blood sugar at times, and we have found two things. 1. He tends to get them more when he eats/drinks a lot of sugar, it seems that the sugar brings his glucose levels up, but then it also drops down quickly resulting in a crash. 2. When this happens we do use sugar / carbs to bring the glucose level up, but then a protein and fat to keep it up and level. I realize each person that is different, but thought this might help.
you mentioned scandi shakes and it reminded me that you're the reason i'm working on getting it! me and my doctors in the hospital were discussing drinks and foods i take to gain weight and i thought of your scandi shakes song and we ended up trying it and now i'm waiting for insurance to clear me being able to get it! who knew your songs would help me!:)
I'm sick with some upper respiratory issue, so I did the breathing with you at the end! Thanks for helping me cough :)
I'm glad your ok! That's scary!! It's kind of funny I am wearing my CF foundation shirt from last year while watching this! 😂
Do you have a favorite or most tolerable flavor of scandishake? Mine is chocolate
Disney Gamer sort of. It's more chalky then boost
Disney Gamer I find my ways like adding chocolate syrup or making a smoothie. Or just do Mary's technique and chug..you don't taste to much that wat
The superhero cape is a great idea. You might also consider a thin dowel rod or stick to make a flag to attach to your wheel chair. Might be more visible and would be fun to wave it around. 😍👍
Glad you bought the candy on a whim!
I've seen my sister drop to 11 and even so low it would not give a number, it just read "danger to low" Hope you get balanced in that area at least!
Have you guys ever considered looking into a CGM (continuous glucose monitor)? I have a Dexcom G5 CGM, and it checks my blood sugar every 5 minutes throughout the entire day. It alerts me when my blood sugar drops too low and too high, and it helps me so, so, so much. But I'm glad you got it handled!
When my Dad used to get low, he acted drunk or started repeating himself and that is how we knew. Also got clammy and restless. Very scary that is for sure. Glad you were careful on the stairs.
I suffer with low blood sugar so I'm sure you may know this already but just in case u don't. orange juice with some sugar mixed in will shoot your sugar up fast and then eat protein to keep it up. (egg, peanuts, almonds, peanut butter, any protein etc.) I usually eat peanut butter on gramcrackers. Just a suggestion that helps me.
I'm taking Percocet right now as a post surgery pain killer (it's not really killing much pain, but I'm not in much pain so it's okay) and all it does is make me feel like my blood pressure is low all the time :( I hope you're feeling better today! Love from VA 💛
Hope your feeling better today Mary!....I wish I was in Boston....or closer...I would love to come walk and meet you guys! :) .... I'm about 7-8 hrs away....which isn't all that bad I guess.
Mary maybe you could consider seeing the eye doctor for your headaches. Perhaps your eyes play a role. My eye doctor has helped with mine as well as the chiropractor :)
hope today is a better da for you Mary!
I remember one time I felt super shaky, and I was confused, and slurring my words. I managed to say, "need Food!"
And luckily I was able to sit. My husband took my blood sugar, and it was 32. Skittles, and a huge glass of orange juice later, I felt better. Now I carry candy with me everywhere, because being low is no joke!
Lows can be really scary, especially when you reach that point when you know you're not quite right but you also can't seem to wire your brain to help yourself, everything moves so slow in your head whereas everything around you seems to be going triple speed.... so glad you got it up ok and that you have Peter and Ollie to help look after you too x
Low blood sugar can be scary! My husband had a weird episode last year because of it (how we discovered his hypoglycemia). He was alone and super confused. He couldn't figure out how to get out of this building at his work that he had been working in for 10 years. After a eeg, we think he may have had a seizure as well (that along with the fasting blood sugar test pointed to hypo). Anyway, all folks are different but my husband's endo said for him to eat something, not drink. I had bought him juice to keep in his truck (thinking i was being a good wife!) and when he told the Dr she said he needed to eat something sweet along with some protein/fat (peanut butter, cheese, nuts). Now he keeps packets of trail mix (with raisins and chocolate chips) with him or nut type bars. I think someone mentioned something similar below... like you've said many times, all bodies are different but just wanted to throw that out there. You could mention to your Dr. I'm sure you get lots of medical advice. 😂 But it's only because we care!
Do you think the IVG could have caused this?
As a T1D, I can tell you, the point at which someone feels extremely low, or low at all, depends on the rate you have dropped from a normal level. If it's a slow drop you might not notice until extremely low (then you feel horrible), whereas a fast initial drop will make you feel awful sometimes when you're technically within normal levels. Do you keep a glucagon kit?
Hey, Mary, I’m fairly new to your channel and know a bit about glucose levels. My paternal grandfather, who was a type II diabetic, learned that foods and drinks with a higher fat content slow down the body’s absorption of carbohydrates - I imagine that it works the same way with non-diabetics - so it’s a better idea for you to go with pure carbohydrate (and simple carbs, at that) to treat lows, rather than foods with simple carbs and fat (such as chocolate). Then, as some people have suggested, eat some complex carbs AND some protein. After simple carbs bring your glucose level back to normal, the complex carbs will help stabilize it, and the protein will help keep normal for longer. I had a friend who was diagnosed with type I diabetes in high school and she always kept Smarties candies with her to treat lows. There are glucose tablets available in drug stores, in the diabetes supply section. If you started using the glucose tablets, you could put them under your tongue so the sugar would get into your blood faster. Also helpful if you don’t feel like eating or drinking much of anything when your glucose level is low.
Get yourself some glucose tablets from the drugstore, and keep some in your purse for emergencies when you are out. I'm a type 1 diabetic and my sugar drops all the time. You chew about 4 tablets and they raise your blood sugar very quickly.
My Feisty (cat) and I are wheezing in harmony.
suggestion: Make a little pack for around the house with apple juice boxes and home prepared trail mix for emergencies?
Mary I understand about what you are feeling. I have Gastroparesis. Basically my stomach is paralyzed and doesn't work anymore.
when you wake up with a screaming headache, keep an extra close eye on sugars. I have type 1 diabetes and 9/10 I went low overnight and then you're arty risk to do low throughout the day. and Peter, same thing happened to me when I was little (barfing spaghetti)...it was a long time before I could look at it again.
Don't be embarrassed by anything. You're helping people by being real.
Did you ever sell the dollhouse that you cleaned up??
Could your blood sugar issues be made worse if your saturations are low??
just bought my shirt!!! can't wait!! LOVE YOU GUYS ❤️❤️
Hey Frey Life!! Hubby and I were looking around your online store, we were wanting T-shirts, but unfortunately there are no bigger plus size shirts for us Triple F's (Fine Fluffy Folks) Tee Hee!! Kinda bummed about it....But, as you say "Laugh everyday". So we wanted you to know you have our full support and we will continue watching you 3 everyday.Coincidentally We know your having low blood sugar issues, you should try to keep Ollie by your side as much as possible for moments just like this, just in case you faint or fall, he can alert your hubby for help; We would hate for you to fall and hurt yourself so please be kind to your body, My hubby is hypoglycemic and he bought some glucose pills at our local walmart, when his sugar drops he pops one in his mouth and it brings his sugar back up pretty quick and they come in a nifty little tube you can carry in your pocket too!! take care you guys. -Your #FaithfulFreyLifers
Btw: I forgot to mention.....How would one even go about getting a service dog? I am in the process of trying to get one only mine is for a totally different reason, My Therapist says I need one and gave me a letter to give to my doctor; But I have to admit I have no idea how to even go about this and im feeling a bit overwhelmed about it, So for those of us that need one, could you help us by giving us any tips on how to even go about the process and where to look. Because I have been researching for a couple of weeks and there are a few places I found but they are either out of state or mostly for people with neurological disabilities, could you give us some tips on how to find a service dog please? thanks
I wish you would show how bible study works- do they have to be healthy to come or do you wear a mask? Do you not show it because you don't want to interfere with your friends' privacy?
I quess they just treat it as a Church meeting and they also, don't vlog at Church. So... probably that's the same. They meet to pray and that is their main focus. Some parts of their life they should keep private :)
Great Strides Grand Rapids is having a dining event to go towards the CF Foundation here. :) We are having a 15% profit from dinner at a local pizzeria type place on Monday!
+Sarah Pierman awesome!
I have type one diabetes. I've had this many times. It's so scary!❤️
Josie Terry ❤❤❤
Josie Terry I'm a type 1 also Josie! It's a struggle everyday! More power to us! 😀
Megan Lawrence 💪🏽💕
Josie Terry I'm a type 2, but get hypos thanks to taking Gliclazide to control my sugar. I know that if I break out in a sweat that I need to do something to get things back under control. It's scary if it progresses!
Penelope Polins née Meyer 💕💕
Omg! that spaghetti looks phenomenal!
Oh my. Mary what you describe there sounds like depersonalization. You just made me realize that those times I had those mysterious transient episodes of depersonalization as a teen might have been low blood sugar.
Could you start going live on Instagram when you go live on Facebook? I'll be able to watch it on there. Also thank you for keeping me happy and stay positive.
Hi Mary, I have had low blood sugar too. It makes you feel uncomfortable, nauseous, shaky, rapid heart rate, sweaty and it's hard to comprehend things when you get like that, too. Because your brain needs glucose to function, it is harder to carry on a decent conversation. I tell my husband not to ask me detailed questions when I get like that. As others have mentioned, eating protein after you've eaten some sugar, is best to balance you. I usually keep candy in my night stand and in my purse for times when you can't get to something else right away. I know when I get that low, it feels like I'm floating and I also get agitated easily. So, make sure the grouchy bear gets what it needs so it can get back to loving you beary much! Ha!
I have some undiagnosed esophagus thing (possibly achalasia, I have a test for it in 2 weeks) and im on small amounts of thick liquids & applesauce, but I sometimes have episodes that are a week or 2 long where I cant eat or drink ANYTHING, and when my sugar gets low (30-40s) I get so spaced out, shaky, dizzy, etc. & it sucks. I even have a plastic tub in my shower to sit on while I shower if im feeling like that & need to shower before going to the ER.
"Four Paw Pileup" should be the next iron on for a tee shirt!
When my blood sugar goes down I usually can't feel it. It got down to 37 one morning. We know it's not hypoglycemia but it's extremely similar.
You can also get some glucose tablets OTC at most places. I think it would be a good idea to get something like that.
I have diabetes due to an underlying chronic illness and have had some scary lows I think my lowest was 29 at that point I had serious symptoms but if I am in the 40-60 range I only get very sweaty (gross I know). Do you know when you are getting your feeding tube? I have a GJ tube and it has definitely saved my life. I looked up the CF walk and they are actually having one just an hour from me in Fargo ND and I am definitely going to try and get there as long as I am healthy enough at the time. Many prayers sent to you, Peter, and Oliver.
hi Mary #thefreylife ive just signed up as a V walker under mary and the boston walk. just hope people will donate. lots of love all the way from the uk xxx
Mary I have an emergency glucagon shot in case my blood sugar drops and I am not with it enough to eat or drink anything. You might want to have your doc prescribe you some so you have them just in case.
Mary, hypogylcemia can be very serious. You should keep a small amount of candy at your work station and various areas throughout the house for emergencies. You should follow with a glass of milk or spoonful of peanut butter because the protein will keep you more stable. Be sure to talk to your doctor about this. I don't mean to sound bossy, I just really care about you guys. Love and prayers to you both!
The CF walk near me is not until October 21st. :(
Omg! I also had a super low blood sugar on Wednesday. I was at school and started to feel a little weird but didn't think about. A little later I felt shaky and hightailed it to the nurse. I was at 32 and nearly passed out :/
you could cut around the neck of the t shirt leaving it in one piece, that way you could pop it over your head and leave it in a cape shape, that way you might not need pins, hope it helps you
I am a type 1 diabetic and I always go low at school which is bad since I'm not home and it's quite a walk to the nurse! I was 28 the other day and for some reason my Dexcom GCM monitor wasn't working to we have to treat and change my Dex in one visit to the nurse!!
I hate being shakey frm low blood sugar!! I get very bad hand tremors frm low blood sugar and hyperthyroidism and Its not fun!! it hurts and of course ppl look at me weird!! I'm sry you had such a rough time of it :( praying today was better!! 💜