Evaluating Chronic Illness is Complicated | Comparison vs. Perspective
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- เผยแพร่เมื่อ 5 ก.ย. 2024
- [Vlog 2.16.21] - Keeping comparison and perspective in balance is complicated!
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If you’re in a tough spot, I feel ya. You’re not alone ❤️
My chronic pain has been worse the last few months. My team has maxed me out on my pain medications. We aren’t sure what the next step in trying to keep my pain under control. The last couple of weeks have been tough. I am just trying to take it one day at a time.
Yeah, February is usually rough for me. I’m trying a med change, but so far... not so successful. I’m spending lots of time in bed and hoping that things change. 🤞🏻
Working on complex medical issues can be so tricky.
You did such a good job at explaining how illness can change day to day and how its so complex and we dont always know what's causing what so relatable
You feel like I do I’m having fibromyalgia flare hard to explain my symptoms I just feel off! Here’s to an on day tomorrow
Could it be your not feeling well because of restarting the IVIG? Hope you start feeling great again. Well wishes Mary ♡
Mary we are on your team with you. Prayers always going up for you. I’m so happy you have Peter, Ollie and Harry. I know they give you so much love. God bless you all.
Yes!!! I sooo get what you are communicating today Mary... I have MS and my health/energy levels fluctuate a lot from one day to the next. AND it's not visible so I have to explain myself often. When I have really rough days, I struggle with perspective. A lot. And I sometimes let myself get scared and/or irritable. I need to work on that. Thanks for the "thought break"! Much love to you and Peter!
Sunshine ☀️ and snugs I can see it on a tee shirt 😂
You guys are keeping me going.
I'm 52, not been out for months basically I lost my darling companion back in Nov. No walkies to get me motivated.
We are in lockdown here in the UK and today I get an email saying "clinically extremely vulnerable" ppl are going to have to be in lockdown till March and then the Health Secretary (MP) will review it.
I'm on a flipping rollercoaster!
Keep on keeping on . And Mary, ye\ah I get ya, one good day followed by 2-3 bad days.
Peter, thin is best for pizza lol
Much love
Dee Portsmouth, UK xxxxx
The ups and downs of chronic illness. I can totally relate.
I am definitely heading out tomorrow for a Drive - just for a change of scenery.
Vlog recap
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Luckily, I am not terminally ill, but chronically, and I feel that. My life-changing medication stopped working months ago and right now, my lungs are letting me down and in both cases, we wonder why. It's not like I am extremely suffering, I can run, do sports, study, all that stuff, but my energy is quite low, I am so slow and sometimes I think, if things were different, I would be unstoppable. I guess, if you got a normal body, you would leave all of us behind. :)
I was wondering if it was related to IVIG, too! The timing seems close, but who knows.
You two warmed my heart soooo much today, and I needed it, so thank you from the bottom of my heart.
As crazy as it sounds I just said to my husband Its so refreshing to hear somebody explain exactly how you feel. I suffer from Pulmonary Hypertension , Atrial septal aneurism, enlarged right heart, heart failure, and the latest was a nice pulmonary embolism on top of all that. I have been treated at Duke for about 15 years now. I know we are working through different things but you really help us so much. My husband takes such good care of me and watching the vidoes lets him know he is not alone in being a caretaker. Thanks
I am a social worker with a CPTSD situation with ridiculous anxiety. There are good days and there are bad days, and it all means I need to be extremely mindful of what I feel like I'm capable of doing every day. I have to be mindful of that every day so I don't crash when I'm with a client, doing a public project, etc. We had a family emergency this week and because I had everything in place from my doctor to be able to take off when I need to, I took the following day off to be able to appropriately deal with the fallout (both mental and with my family). Chronic illness isn't a weakness. It's a strength, because it gives us better insight into what our bodies are capable of doing at any given moment, and that gives us the ability to say when we can and can't do something that would otherwise make things worse. Self care is important and safety nets are doubly so. Lots of love to y'all!
Mary, you were in my dream last night, I hugged you and I was so happy meeting you. Then I woke up and the joy was over. I know I shouldn't hug you in real life(CF issues). You're my inspiration and I khow you can do whatever you want in your life. We're your prayers. Also Peter is a brave man, bless you both
Good job, Peter, it looks amazing!
You too, Mary. We are on your team. Praying for you!
Mary, I keep thinking about your IVIG you received a week ago. Could that possibly be the problem? I know I am probably wrong, but it seems like that is when you started feeling worse. As you haven't had it in awhile I can't help but wonder if your immune system is reacting to the infusion.
I was thinking the same thing because that is the only change I have seen on here. Although, I realize we only see like 15 minutes a day. But that is a big change that she did have.
Could you have possibly built up antibodies to the IVIG during the time you weren’t taking it?
You’re so lucky to have the support you have. I have several chronic illnesses and zero support. I wish I had a Peter!
The brain fog is real. So sorry you are experiencing a bump in the road. Sending blessings and love! ❤️ Thin crust, all the way! Oh, and the Mister Rogers music did not go unnoticed! 😄
I agree with Peter...I think it started when you went back to IVIG. I watch you guys everyday.
Sometimes when restart Ivig it can take a few months to feel better. I noticed it when 8 changed from sub q but was less when first starting. May need to go slower.
This is exactly what is on my mind today. Thx for verbalizing it. Hope it helps others too.
You are such a trouper, Mary. I’m sorry you have been feeling crummy and I will pray the antibiotics clear up any infection. The soup looked so good - you two eat so heathy so you are doing all that you can. All the best, stay safe. ❤️🇨🇦
Fellow person with a chronic illness here:) Thank u for this video ♡
I wasn’t feeling well today. My primary care doctor isn’t sure what the next step is in my care. She did validate that I have a genetic disorder that my adult congenital heart specialist keeps dismissing my concerns and getting me tested. After the pandemic my primary care doctor will have me seen by the genetic team to get tested for the specific genetic disorder. I love Ledo’s Pizza! I am a Marylander!
Watching you back a couple years I notice a change in your coughing. More congestion. Prayers
Hi Mary and peter I hope you doing better Mary
I live 30 minutes from Durham and I agree, so good to see the sun. People should not tell you to be grateful, others are worse than you. We all have ups and downs and we have the right to our emotions and feelings. You can never know how someone is feeling by looking at them. All of us who live with illness are just grateful for the good days. Being a Christian makes me focused on God and not this earthly vessel which will someday wear out and I will be in eternity with Him. I can do all things through Christ Jesus who strengthens me. Thank you for sharing the struggle Mary.
Dear Mary, you have done the best you can with the tools that you have and the knowledge that you have so when you don't feel well, I feel so bad for you.
I hope you bunnies are safe and warm! The news over here said that NC had caught part of the snow storm xxxxxxxx
I sure understand what you’re saying about trying to figure out what is causing a change in health. I’m going through the same thing now. Going to the cardiologist soon to determine the extent of my POTS. I can’t tell if that’s acting up or if there are other reasons for the way I feel. Right now I’m just trying to stay warm until this winter storm clears up. We Texans are not used to this like you guys! So far my family is all ok but I have friends who have been without power for 3 days. They have had to go stay with family. God is good and we will endure because of His grace! Hope you start feeling better soon.
I haven’t been feeling well either. I feel you. I have a lot of chronic illnesses and I do find that that I have my ups and downs.
Hi Mary and Peter! My best wishes from São Paulo, Brazil!!!!
I feel you on not knowing whether to make med changes when you have some flaring up that you're not sure if it's that med or not. If you stop it and feel better, you never even know if it was the med or you're just back in an unrelated upswing. I find myself stuck debating so often on whether to make changes or not. Comparison vs perspective was a very good and timely reminder as I'm feeling more painful than I have in many months, but it's not as bad as it used to be!
Today was a rough one. I had a panic attack at labs today.😫😭 Thank you for the solidarity. I hope tomorrow is better for you.😚
That piano background music reminds me of the music in the Mr. Roger's program.
Me too!
Hi Mary, praying you start to feel better soon. If you use rubbing alcohol on that bowl it should take that marker right off.
I hope you feel better soon Mary.
It get Zemaira plasma weekly & they had a recall & I’ve now been off plasma for 3 weeks. I’m blown away at how much better I feel. I literally got my life back. My energy is back, my 02 levels went from 89 to 98 during activities. I know I’m risking a much shorter lifespan without the plasma but the quality of my life means so much. I really have a hard decision to make.
Thin for sure. And all you have shared about ongoing health, so true.
Having a team is awesome. Pray for us that don't have one. The aloneness is real.
Like you, I suffer with a chronic illness, the changes from day to day sometimes is unbearable.
Mary and Peter sitting outside in short sleeves enjoying dinner and gardening, meanwhile the rest of the country is subzero temps and covered in ice and snow! Mary and Peter, can we come visit? 🥶🥶🥶
How s Peter Frey so skinnny with allll that delicious food Mary makes yummmmm and showing the paddle was really the highlight of it all
Definitely Thin Crust Pizza! Hope you feel better soon Mary. I have Asthma and just got over Covid. It was a Beast!
Each day is its own. Be sure to give yourself grace..
You talked about IVIG may be related. I wonder if the weather might also be a factor. Rainy days make me feel kind of blue and listless. 😁👋💖
Loving the vlogs keep it up Mary and Peter
Your blessed Mary, your so positive. Keep it up. Your doing good.
I haven't been feeling good lately either. But mine is more mental than physical. The weather here has been awful. Too cold and snowy to go outside. I am a stay at home mom so I don't have a job to go to. I have been stuck in the house for days. I feel smothered. Its awful. I know many others can relate. Hang in there lovely girl.
To remove the marker from your dish, take a dry erase marker (NOT a permanent marker) and go over the marker on the dish and wipe with a damp paper towel. Dry erase marker takes off permanent marker pretty much any hard non porous surface.
Always on your team, Mary and Peter!
I noticed the vlog was up 45 minutes later than usual. When checking for it, I was hoping everything is ok, and I'm glad everything is ok.
(Garden border) "Working With Peter" show, brought to you by Peter Frey. Fun to watch the work in the yard. Mr. handyman. I bet whoever got your house in Massachusetts was happy to have the walkway in the front, from the steps to the driveway, and also the gate for the driveway. I remember watching Peter build those.
When it rains or snows I often feel miserable. 🌧 I feel for ya.
Mary you rock? Luv ya! Hope you get to feeling better. OMG that pizza looked delicious! NY style all the way.
You need to come to St. Louis, Missouri if you like thin pizza, it’s a big thing here. One of the places you have to go is Imos. Thin crust pizza with provel cheese instead of mozzarella cut into square pieces instead triangles.
Your husband Peter is so supportive!! You are both Blessed! I wanted to say the other day That your IV seemed to start something.
Send some sunshine to Oklahoma, Miss Mary 🙏☀️
Glad You had a good day Mary glad You did too Peter praying for You Mary You guys are an amazing couple God Bless
I will add a thought which I am sure is probably not true, but I was surprised when you got on the exercise bike while doing your vest. That sounded like a lot, like maybe not a good combination. I only say this because it is one new thing other than the IVIG. I understand about the dilemma of figuring out cause and effect with chronic illness. My daughter deals with the same as she has several autoimmune issues.
Praying for clear answers and improvement soon for you. 💖
There are many medications that cause me to have debilitating fatigue. When I stop taking them, I feel better.
Love thin crust but you guys are right chicago pizza is in a category of its own! Lou’s pizza!! Yum!!
So glad that the sun decided to come out of hiding and you were able to enjoy some sunshine. Sunshine always perks me up! I like most kinds of pizza crust, as long as it isn’t doughy. Deep down though, I do prefer thin crust pizza🍕 Continued prayers for your health, Mary. Much love to you, Peter, Ollie, and Harry 🤗❤️❤️🙏🏼😘🐱🐕
My husband and I like thin crust pizza, but not so thin it's cracker crust.
The last 2 days I have had a asthma attack and was coughing my head off and had trouble breathing. I understand when you are not feeling well, that it's hard to think and communicate but I know that we are strong and God's got our back and will help us get through the tough times.💪😇🙏✝️
Im so ready for my ivig next Monday ♡♡
Yes when I feel bad I can’t think straight either. Brain fog. So good you have Peter.
Same. Before my stem cell treatment in Germany for Lyme disease, I was so sick I literally couldn't walk. I wasn't living at all anymore. After the stem cell treatment I did so much better. Now I'm worse again, but not as bad as before the treatment. Better than before the treatment but worse than right after the treatment. It's a weird place in limbo for me. 😅
HI!! I went from being a marathon runner and long distance ciclist to barely been able to run 3 miles (THANKS TO INTERSTICIAL 'LUNG DISEASE' (ILD) 😔😔 & UNDERSTAND YOU 100%
Foristell Missouri 9" snow and was - degrees
that pizza looked amazing, even folded. I live in N.Y so for me to say that means a lot since here is apparently great pizza but I'm super excited to try Chicago pizza one day!
Sunshine and snugs... we need that on a shirt!
Chronic diseases and illnesses are so hard on our bodies and mental health. Struggling with finding doctors that even have experience with my rare diseases can send me into a tailspin.
Such good advice 😉 Thank you
You’re doing great!!keep swimming!! Big hugs 🤗
Good morning guys x
I have ALWAYS thought that IVIG and you.
I have never really had thin pizza, but LOVE THICK CRUST, and agree with Peter that Chicago pizza is in a whole another category!! Next time I eat it it has to be Lactose free. I was sooo sick.
I like both when done just right. Both can be dreadfull or terrific, depends on restaurants.
Well I think we must all keep a good perspective on our health. Last week I received my new nebulizer. Today as I walked down the street I smiled and realized I felt good. Yesterday was a different story because I suffer from two pain disorders Fibromyaliga and Costochondritis along with Asthma. Do what you think you can't do and celebrate good times come on it's a celebration. Celebration is a song they played when I was a kid in the seventies. That pizza with thin or thick crust looks yummy no matter what. Thanks for Sharing you're day I'm praying from you Mary feel better😋😛😜✌.
One of my cousins lived in Germany for a time. She said on really cold days, they open all the windows of the house to freshen it. I won't be doing that today here as the temps are 25 with a wind chill of 16 F. We have around 6 inches of snow. Our pipes are frozen and some have broken but we can't do anything until it gets above freezing for a couple of days. UGH.
sending you guys love and prayers
Pizza for me needs to be thick, or thin and crispy. I don't like cheese pizza. I'm weird, I know. I like some cheese on a pizza but not a lot of it. Saying a prayer for you, Mary. You are so sweet and I do hope you feel better very soon.
Have to say you and Peter are a wonderful family, plus Ollie and Harry. Mary I just wanted to tell you, if you’re not feeling up to par, do what you need to feel better. I’m finding since this pandemic started I’m not myself either. You have a ton of medical things most of us don’t. Yes I have a few problems and some days I just sit on my behind and don’t get much done. I an’t feel bad over this so that’s that. Mary, just do the best you can, do what you can do for that day and put it away. I still have my special Christmas tree up on the mantel of our fireplace. I think of you and all that you are dealing with, and she is so talented. She may not feel the best and yet I got one of her trees. I wish you strength and please don’t be so hard on yourself. Please stay well, prayers will be said.
I like both crust pizzas. It looked delicious. Your cactus is doing so well. We all have good days an bad just have to push thru to the next good day an make hay while the suns shines.. As the saying goes. Take care.Getting out of house helps.
Have you thought about how IVIG infusions felt like the first couple times you had it? I started on IVIG in 2011 then switched to Hizentra in 2016. I switched back to IVIG (Gamunex-C) a couple months ago and figured out my blah/headache days were worse the first three or four days after my infusion vs other times. I had forgotten this and it helped me figure things out.
Hi Guys sorry your not feeling as well lately. Also you recently started the new med Emgality for migraines that may have cumulative effects. Sure your team will evaluate, but just another thought. Hope you feel better soon.
Thin Pizza but also a million toppings. Is that a thing somewhere or just in my kitchen? 😁
I like a lot of toppings, but prefer veggies to anything else.
For me it depends on where the pizza is from which crust i like. Though I am not supposed to eat any of it anymore... uhg
Thin base definitely!!!
Not a fan of thin crust pizza. But Mary's piece looked delicious. Peter's was basically a calzone when he was done folding which I'll always go for.
Mary, I have noticed for a long time that you feel worse after IVIG. I wish you had a chart from your VLOG's that would show this. I now watch for this to happen after those infusions and it does!
Hope you will have a good night sleep without too much interference, tomorrow is a whole new day with new blessings, you are in my prayers
I love a good thin crispy crust pizza or Chicago style pizza. We moved from a suburb of Chicago to Austin Tx 10 yrs ago and really missed the pizza. Texas does not have good pizza 😭
If you don’t mind me asking how many enzymes do you have to take with your meals in order to be able to absorb the nutrients i’ve just recently been diagnosed with EPI... and by the way I love the fact that you make videos your such a strong woman and God has really blessed you with the strength💖💞
If you want to get the sharpie off the bowl, use an alcohol wipe! I’ve use it many times before and it works wonders! And I figured you had plenty from IV stuff. Lol! 😂😂
I wonder if you are experiencing a bit of the blues. The weather has been kinda yucky and I’ve been feeling a bit sluggish too! Thinking back on times you’re experienced this fatigue in the past...seems like it was related to gloomy, stuck in the house weather. Just a thought....
I don’t know about where you live but where I am we were told to takedown all bird feeders because there is some disease going around and some birds are dying. Hope that is not the case in your state.
Thin pizza here.. sometimes with no sauce ham and black olives
Go Peter
Yup... I m in a rough patch too ...I was thinking ... since a lot of your subscribers watch many of your vlogs consistently you could ask them periodically say once a month ...
to comment on one thing ...
Why do you think Mary feels the way she has been over previous month?
She has been reaching out for answers and perhaps collectively we can analyse
a little ... a mini experiment ??? of sorts
example ... someone may be on similar meds and may have similar weakness..
or another person finds exertion on the bike also impacts them similarly...
or someone may have experience with the new headache RX Mary started a short while ago...
I know personally that rain for a week used to worsen my migraines in MA
Great advice.
I like both thick crust and thin crust (as long as the crust isn’t hard)
@1@4:30 I am enjoying the music
I think everyone can say that about their conditions. Ups and downs. Your liver may be what is making you feel sick.
I love thin pizza. There is this place near my house that I love. My brother had went the location in his college town a lot and they finally built one here in 2019. My mom and I do pick up at least once a month or every other month.
I like both kinds of pizza. I have never had Chicago pizza before. But that pizza looked good that you were eating. Mary I will be praying that God gives you wisdom to know exactly what to do concerning your health.
Do you have a plan for preventing critters from eating your garden
If we're a "fly on the wall" in the car, would that make us a bug on the windshield? Haha