Same here! Quarantine has meant less visits in office but Oh so many more phone calls! Have been dealing with getting IVIG approved and switched from in office to administered at home. Hope sub q works well for you!! Started sub q hydration almost 3 weeks ago and has been quite the learning curve! Right now we switch back and forth between thighs. Arms and belly are not good options for me. Arms don't absorb at the rate I need, belly is taken up by g and j tubes. I'm sure you'll find a way that works best for you!
Waiting....makes me think of Claire Wineland, what if she would have had Trifecta or another new CF drug...you know Claire is smiling down on the ones who got it....Claire, was that way. A light as bright as her, will never go dark. I miss her. I know many do. Peace. Stay safe.
Is this the once a month subq? cool. I have to do two injections in my stomach. One is daily and is to try to rebuild some bone in my spine, one is new. The new one is once a week because it has more than one med in it and son has to smack it on his hand 80 times and then check by picture they show the color to see if it is enough. The first one for the bones is a small thin needle. Not bad. the second one because of the mixture, is still a short needle but thicker. It is ok but not my favorite. They can be injected in stomach or thigh. They have come out with so many new things. My second one is to regulate my blood sugar but is not insulin. Hopefully if it works, I will be able to come off of metformin. Just think, you will have more freedom with the injection and don't have to try to schedule everything around it and is supposed to work really well. Good luck.
Finally you get IVIG! I have been working hard this whole quarantine to take plasma from donors just so we make sure people like Mary gets their IVIG! This helps me as a reminder of why I am working during this pandemic!
But she didn't get IVIG.. she got SCIG which is actually very different which is why she said she was nervous. It's a completely new "drug" she's never been on.
We used Sherwin Williams Banyan Brown on pine in a project recently (I’m an architect) and it turned out great! Used the semi-transparent stain from their super deck line and it’s not too dark, not too yellow and not too orange.
Peter you need to get samples of natural stain colors and use left over fencing to create examples of stains you like for comparison. What we see on video is not real life color. ❤️
Two things... I loved Peter's expression when he learned Mary is finally getting SubQ-IG. Such joy and relief. I cracked up when Mary was gasping at birds. That's a great name for your new bird channel....Gasping at Birds. 😉😄😄😄😄😄
Three things! Harry!!🤗🤗🤗 How cute was he, curling around and around until he was wrapped up in his cocoon. 🥰 Oooops! FOUR things. I'm making Salsa Chicken for the first time. It's in the crockpot now. So excited to try it.👍🏻
Watching Harry burrow in his blanket brought me such joy!! My chihuahua Reese (RIP) did the same thing and it was so fun to watch (a little scary too when I couldn't find his face because I was afraid he couldn't breathe!!) I am down for a Mary bird channel!!!
I so love the idea of a thank project for the vertex workers. I'm so grateful just for my pharmacist for making sure they keep all my pills in stock, let alone the people who actually make them in the first place. The people there will absolutely love it xx
I switched from ivig to subcutaneous 6 months ago and love it. A nurse will come out 3 times and show you. I pre med,and it goes in the stomach, thighs or back of arm. I use stomach, the needles are so small you don't feel it. The ivig took me 6 hours because of headache, this Hizentra takes 2 half hour
I will forever love how you get excited over the little things Mary. Like watching the birds, the sun shower you had today, or pretty sunsets. Your joy brings me joy, so thank you. :)
Iron is good for coloring wood a "darker more normal" color. You can find iron most places and you just rub it on with a rag or a paintbrush, it'll get darker as it sits in the weather.
I totally get your love of birds. My feeder is well stocked. Even better is a small $3 plastic window bird feeder that suctions to our window. We put sunflower seeds in it and have blue jays, nuthatches, chickadees and colourful song birds. We too have to stay on top of the squirrels. They are not content to munch on seed I put down for them. They need to be sitting in my window bird feeder. Acrobats to say the least.
My ex fiancé had bird feeders in his yard and I loved watching all the birds. I miss that because I live in an apartment. No bird feeders allowed. Please keep sharing your birds with us. TIA
I just adore you guys -- Ollie and Harry included! You have the most incredible way of finding the good in everything. I am truly inspired by the way you exercise gratitude! Praying that the new medication delivery system will work out well for Mary. And... I really like your fence the way it is! It contrasts so beautifully with the vibrant green and dark brown of your yard!
Great news on being approved for Immunoglobulin Therapy! I think that squirrels would try or do just about anything to get at a bird feeder. I love listening to you laugh, Mary. It warms my heart. Blessings to you, Peter, Ollie, and Harry! 🤗❤️❤️🙏🏼😘🐕🐱
I’m on SCIG.... it took 4 years to get approved! I do 5 needles in my thighs once a week. But my team is considering splitting it up to 2 times a week.
Redwood stain on the fence is beautiful! We have a lot of redwood fences in California. We also have lots of white, but I don't think that's what you're looking for. Mary, congratulations on finally getting your immunoglobulin therapy approved!!!
I was thinking of a Redwood stain for your fence. I'm happy to here you are once again getting Immuno goblin therapy. After 2+ years my daughter just got her second dose of IVIG this past week. She is juat starting the Journey of IVIG and has done well so far, Thank you for sharing your Journey with it, it has not been scary knowing some of the in and outs.
Here in the U.K., a company called Ronseal make staining for fences. The smoky blue is rather nice! Mary, I am praising G-d that your approval for SCIG has come through. Give thanks to the L-rd for He is good. His mercy endures forever! Shavua Tov (a good week), guys! xxxxxxxxxxxxxxxxx
Don’t worry too much abt giving yourself sub q shots. Not difficult or painful at all. I had to give myself chemo sub q shots for years and the process was fine. Becomes routine. I do know that everyone is dift with needles & all... but also can tell that you are quite a warrior who will handle this effortlessly💪 best of luck & pray you have no bad reactions that you are worried abt
Thanks for this vlog . Harry trying to crawl under the blanket made me laugh, Mary doing her bird siting reactions made me laugh so hard. And then you discussing your issue with getting your medication and treatment sorted out when moving to another state, made me feel not so alone, as I to have moved states, as I have mentioned before. I have been dealing with my new Doctors having different options on the medications that I was on and wanting me to change them, which I have been finding very difficult, as I found the medications I was on were working well for me and now I am in a position where I'm between medications and am feeling rather crummy. whilst still trying to trust my new Doctors. You have this nack of putting things into perspective for me, so once again Thank You.❤️🇦🇺
Yay! SQIG! At least for people with Mast Cell Activation Syndrome (a type of allergy disorder where mast cells are overreactive), SQIG tends to be better tolerated than IVIG so I wonder if it would be the same for you? Obviously everyone is different though. I hope it goes well and I’m so glad you have access to this treatment again!
I have been doing SUBQ IG since 2008. I have had the 2 and 3 needles set up that normally go in the abdomen to do it. They are small needles. You numb up the area, put the needles in, put the tegaderm patches over it and use an infusion pump to push the SUBQ through. Your infusiont pump depends sometimes on what SUBQ IG you use. I use Gammagard now but have used others. I do mine every week. You can also put it in the back of your arm, your leg, or any fat pads at your love handles.
You are making good progress on your yard - it is going to look awesome!! Mary, when you were whistling, it sounded like the bird was talking back to you. Thanks for sharing your day - have a great weekend!!
Hi Guys , For all the furniture I have designed and built , I have always used 1 < ONE > , 'signature color' Minwax 210b Golden Oak. Wether the wood is pine or poplar or oak // maple , whatever , the natural grains really show through and the wood seems to brighten right up. Of course after staining you would need a coat of semigloss polyurethane , ( basically a plastic coating ) for that effect outside , gloss would be no good and a satin finish would not be as good either. Trust me , it will look amazing !! , Backyard looking great , good luck with new meds , TY for the video , take care , Gary
Hey Peter, Regarding Stain. Take a sample piece of wood to the hardware store. Some stores will have samples of stain on different types of wood so you can see what it looks like on yours. Best way to tell also buy a few small cans of your favorite one and try on scrap pieces of your fence. P.S. I like Wendy Lawton's s suggestion here. I was thinking the same when I was looking at your yard.
Not sure if you would like it, but I love the deep red/brown tones for fences. Almost like mahogany (I know thats also a specific type of wood). Its a gorgeous color. Loving that your getting what you need Mary! Sending prayers to you guys ❤
We are in the midst of a remodel (for the past 4 years,) We have some "temporary " boards on the railing of our deck, and they looked like your fence a couple years ago, and now they are a weathered grey. I kind of like the Color because it blends well.
My son and I both have major immune deficiencies and I have multiple autoimmune diseases. We started on IVIG, he switched to SubQ and was on it for awhile and didn't like it, he ended up going back to IVIG with a port. I tried sub q for awhile and didn't like it either. I prefer the IVIG through my port. Now I didn't tell you all of this to scare you. There are alot of people that love Sub Q for it's flexibility because you can basically work around your own schedule when you want to do it, you also have the flexibility with sub q to take it with you on trips or vacations just like you would any other meds, versus IVIG that you have to do at home with a nurse or at the hospital by appointment. The needles with the sub q are small, and don't hurt to bad, depending on what brand of med you are on, they can be placed in your stomach,back of arm, love handles, and upper front of your legs. I am glad you were able to get approved, I know how hard it is because most insurance companies fight it because the meds are so expensive. I pray the Sub Q works great for you 😁
For Peter and the fence, put brown color on it so it will match the malch and go great with green leaves on trees.. and Mary, wohoooo for immuno therapy, keeping my fingers crossed that it all goes well :)
if you can find enough used motor oil and paint it on the fence it makes it so pretty that is what we do in the country it leaves the wood well perserved and only needs done once every few years
Your yard is looking really nice. Love the birds. Hope little Mr. Squirrel wasn't able to get to the bird houses. He's cute to. He was funny like he didn't know what to do, lol. Love those birds. Glad your medication stuff is getting sorted out Mari. Have a great Week!🐕🐈🐦🐦🐿🐇🌞🌺🌻
Wow guys, your back yard is looking awesome!! So happy that your SCIG was approved, yay!! Praise God! ...The color of fence stain next to natural is called Honey Maple, it's a beautiful color!....You both look great, stay safe & God Bless...Hopefully your squirrel issue will be good :) :) :)
Hi Peter and Mary I think the same colour of your decking would be nice for your fence it would look lovely against the bark of the trees and the green of the grass just a suggestion.
I'm in Florida where the state law requires that IVIG be given in the doctor's office. For the past 12 years, every 4th Monday is my "chemo Monday" .January 1st my insurance company decided to not approve it for my CLL (chronic lymphocytic leukemia). Finally in March it was reapproved due to my oncologist telling them over the phone and in writing that my infusions are a life or death situation. Mary during your 4years of doing them at home which drug were you taking? My IVIG drugs have been switched at times due to world wide shortages. Monday I'm expecting it to be Octagam, but it may be the Gammagard again. One of them takes 4+ hours to drip into my port where the other one takes just under 3 hours. Which ever one, it's a long day for me since I live an hour away from my doctor's office plus the pre-meds of benadryl and pepcid take 30 minutes after my bloodwork is approved. Good luck with the new way of doing it. You are going to keep your port in case of needing antibiotics aren't you?
Great News!! I'm really happy for you Mary! That little Squirrel is determined!! He is so cute!! The yard is looking good Peter!! Great video guys! 🥰 You guys were so cute gasping at the Birds!! 😁
H, I hope you have got the IG by now. Sub Q is a breeze. In Not America, where I live, I have to draw up the medicin myself, put the syringe in a pump/feeder and having it going in during 30 minutes. I do 50-60 ml weekly and have done so for... say around 5 years or so. My syringes only takes 20 ml so I have to switch out the syringes a couple of times, and as it's uncomfortable to do more then 30 ml in the same spot ,for me, I generally use two needles. It's great. I have only had two to three pneumonis per year after we figured out how to manage my whole medical situation. Before that I had a more or less continuous pneumonia that only changed location between the X-rays and more or less rented a room at our infectious disease wards. I'm glad that you can get it through your insurance as it's ridiculously expensive. I get mine through our NHS like system, which I appreciate very much. Stay safe and stay sane everyone. Yours, Ann
I was on IVIG (for my Immune Deficiency) in 2018 but stopped because of symptoms. I am also going to be doing Sub Q. I have the medication and everything I am just worried about a nurse coming in to my house right now. The re-approval time is crazy considering you have been on it before.
It’s not the same thing. Sauerkraut is fermented with live organisms, whereas pickled cabbage gets its sour flavour from vinegar. Most store bought vinegars contain sulphites, which pretty much kill live organisms. Sauerkraut is healthier for you because of that. Just a little fun fact. 🥰
Love love it when Mary giggles peter you are working wonders in the yard and colour my daughter did hers a lovely grey which would suit your house and deck
When I lived in MN and we got rain when it was sunny, we called them sun showers. I now live in the Rockies, and with such huge horizons and the fact that we're on the edge of a mountain range, I wouldn't go so far as to say it's common, but it's also not exactly rare, that we get rain from a cloud blow onto us, even though we're in the sun - we got one just a couple days ago.
I’m currently in the hospital for a severe gastroperesis attack. The first day when I was directly admitted, the lady told me that my SD Jake wasn’t allowed in my room, nor did they allow any visitors at all. And someone has to be in my room to care for Jakes needs and watch him when I can’t. Well I knew this wasn’t allowed so I told my daughter not to leave. After a few hours Jake my medical service dog, and my daughter, were allowed up to my room. It was so so horrible and I just wanted to leave and go under home. Well he is currently laying on my hospital bed happily, and my daughter is pretty much living here as his caretaker. It just was something that didn’t need to happen had they known the law. They have a no visitor policy all over due to new cases of c-19
Kim Wilding thank u so so much. Now I have a fever so it’s not good. This Is a hard hard time to be inpatient. No visitors r allowed at all. They r allowing one person to be here when Jake my service dog is here. They have put a new NG tube in for me to go home with. I can vent with this one too. I just want to be home with my other dogs and kitty......even my fish. Lol. I want to just sign myself out.
When I first started sub q immunoglobulin replacement therapy a nurse came to my house to show me how to do it and everything. I infuse once a week and she came for 4 weeks. After that I was on my own with it. I use Cuvitru.
Pray subq works for you. I started subq Hizentra back in September. I dont have the side effects with subq like I had with IVIG that I was on for three years prior. My doc has me do it every day!
you can see how hard Peter works in the garden if you look at his hands more closely while he talks about the color of the fence😊 .... his fingers are already working through the gloves😂😂
Since we have moved to the mountains of WV, we see Bald Eagles, Golden Eagles,White breasted Nuthatches,Hooded Warblers,Brown Thrashers, just learning all kinds of new birds to us! So fun!
The more opacity the stain has, the longer it lasts ( it will have more uv protection). Semi transparent will have more protection than a transparent stain, semi-solid more than that, etc.
Thompsons Water Seal tinted stain is easy to work with. I used the natural cedar so it's a little red, but it comes in a few different colors. Got mine at Walmart.
Hi guys!! Mary I was wondering if I could ask you a question? I was recently put on Pancreatic Enzymes. I know you take them as well. I though back in Boston you had said which kind you were on so I was wondering if you could share which ones again that you are on and do you have any issues with them? Thank you for your time. I’ve been following for quite awhile now. I have so many severe health problems and I’m still heading down hill. I do have Celiac Disease, Malabsorption Syndrome and also had the Bariatric Sleeve done. I also have Severe Uncontrollable Asthma and Asthma induced COPD!! Thats just a very small background into my health. Thank you guys for you do. I’m so blessed to be on this journey in life with you! Congrats on finally getting Immunoglobulin back!! 🙏🏻🙏🏻❤️❤️ Im from Upstate NY if you wanted to know.. Stay blessed and sending loves!!!
On your fence you could use tongue oil it doesn’t stain the wood it just protects it and gives it a little shine you should check it out thank you for your videos
It’s not “it” as in a singular needle, but “them” as in multiple. The number is dose dependent. Personally I used 6 at a time. The first is the worst. You will get used to it. Hizentra was not good for me. Gamunex was. Every body is different. I used my belly and outer thighs. Alternated locations each cycle.
callyflower Hi were you on gamunex IVIG prior to sub q? When you went on sub q gamunex did you feel the same as when you did ivig. I switched from ivig gamunex to Hizentra and its not as good as gamunex ivig for me.
Please guys, make sure you check on that treatment plan B4 you move forward. Some years ago my daughter had (at that time ) a rare disease called Auto-immune Netropenia, she was one of the 1st case found in a living child. She was treated with Bactrum and something else and doing well. All childrens hopital wanted to try Immunoglobulin as a test on her. Our commercial Insurance did not cover it so it would be 30K out of my pocket, with out any hard evidence that it would work, we chose to pull her out of that program and stay the course of treatment until she reached puberty. At that time The disease went into remission as it still is today, she was 6 when we stopped them from doing the treatment, she just turned 42.
But Mary has been on IVIG for many years. This isn't really a new treatment plan, just an edited treatment plan. They switched IVIG to SCIG. That's all.
Wow! So many medical calls yesterday, including one that we have waited a long time for!
So happy that it finally got approved! ❤️
Same here! Quarantine has meant less visits in office but Oh so many more phone calls! Have been dealing with getting IVIG approved and switched from in office to administered at home. Hope sub q works well for you!! Started sub q hydration almost 3 weeks ago and has been quite the learning curve! Right now we switch back and forth between thighs. Arms and belly are not good options for me. Arms don't absorb at the rate I need, belly is taken up by g and j tubes. I'm sure you'll find a way that works best for you!
Waiting....makes me think of Claire Wineland, what if she would have had Trifecta or another new CF drug...you know Claire is smiling down on the ones who got it....Claire, was that way. A light as bright as her, will never go dark. I miss her. I know many do. Peace. Stay safe.
Is this the once a month subq? cool. I have to do two injections in my stomach. One is daily and is to try to rebuild some bone in my spine, one is new. The new one is once a week because it has more than one med in it and son has to smack it on his hand 80 times and then check by picture they show the color to see if it is enough. The first one for the bones is a small thin needle. Not bad. the second one because of the mixture, is still a short needle but thicker. It is ok but not my favorite. They can be injected in stomach or thigh. They have come out with so many new things. My second one is to regulate my blood sugar but is not insulin. Hopefully if it works, I will be able to come off of metformin. Just think, you will have more freedom with the injection and don't have to try to schedule everything around it and is supposed to work really well. Good luck.
Finally you get IVIG! I have been working hard this whole quarantine to take plasma from donors just so we make sure people like Mary gets their IVIG! This helps me as a reminder of why I am working during this pandemic!
Janet T thank you!
But she didn't get IVIG.. she got SCIG which is actually very different which is why she said she was nervous. It's a completely new "drug" she's never been on.
We used Sherwin Williams Banyan Brown on pine in a project recently (I’m an architect) and it turned out great! Used the semi-transparent stain from their super deck line and it’s not too dark, not too yellow and not too orange.
Peter you need to get samples of natural stain colors and use left over fencing to create examples of stains you like for comparison. What we see on video is not real life color. ❤️
Two things...
I loved Peter's expression when he learned Mary is finally getting SubQ-IG.
Such joy and relief.
I cracked up when Mary was gasping at birds.
That's a great name for your new bird channel....Gasping at Birds. 😉😄😄😄😄😄
Three things!
Harry!!🤗🤗🤗
How cute was he, curling around and around until he was wrapped up in his cocoon. 🥰
Oooops! FOUR things.
I'm making Salsa Chicken for the first time. It's in the crockpot now. So excited to try it.👍🏻
Watching Harry burrow in his blanket brought me such joy!! My chihuahua Reese (RIP) did the same thing and it was so fun to watch (a little scary too when I couldn't find his face because I was afraid he couldn't breathe!!) I am down for a Mary bird channel!!!
Hi you guys. Just wanted to say the back yard is looking fantastic. Peter your hard work is paying off. Great job
The progress on the yard looks good Peter glad You guys enjoy the birds glas You have Trikafta and it's working for You Mary
Stain your fence a light grey. We did and I was surprised at how much I liked it.
Anything SubQ can be given in the stomach, upper arm, or thigh. Basically anywhere you have fat.
You need a hummingbird feeder. Making the nectar is super easy. They are fun to watch.
I so love the idea of a thank project for the vertex workers. I'm so grateful just for my pharmacist for making sure they keep all my pills in stock, let alone the people who actually make them in the first place. The people there will absolutely love it xx
I switched from ivig to subcutaneous 6 months ago and love it. A nurse will come out 3 times and show you. I pre med,and it goes in the stomach, thighs or back of arm. I use stomach, the needles are so small you don't feel it. The ivig took me 6 hours because of headache, this Hizentra takes 2 half hour
I will forever love how you get excited over the little things Mary. Like watching the birds, the sun shower you had today, or pretty sunsets. Your joy brings me joy, so thank you. :)
Iron
is good for coloring wood a "darker more normal" color. You can find iron most places and you just rub it on with a rag or a paintbrush, it'll get darker as it sits in the weather.
Mary the bird whisper lol Ollie is so cute and then you have this blanket moving on the couch!! Love and prayers always
I'm so happy for you Mary. The backyard is really coming along nicely. Looks great.
Hey guys, Do a search on Amazon for Squirrel Feeders ..... ... This way the birds and squirrels can have their own snacks 🐦🐿🌽🙂🤗❤
Cool! I never heard of that.
I know!! I was like poor little squirrel 🐿
@@eej1983able yes 😀
They are so cute. My friend makes them.
Annoying they wont let you keep doing IVIG, however, Thank God! I really feel like it works for you. Ive been anxiously waiting.
I totally get your love of birds. My feeder is well stocked. Even better is a small $3 plastic window bird feeder that suctions to our window. We put sunflower seeds in it and have blue jays, nuthatches, chickadees and colourful song birds. We too have to stay on top of the squirrels. They are not content to munch on seed I put down for them. They need to be sitting in my window bird feeder. Acrobats to say the least.
My ex fiancé had bird feeders in his yard and I loved watching all the birds. I miss that because I live in an apartment. No bird feeders allowed. Please keep sharing your birds with us. TIA
Happy CF🌈💞🔆Awareness month
I love hearing the birds churping! Love your sweet laugh Mary. Peter is working very hard and he's doing a great job.
Fence color: How about a brown/gray that matches the color of the tree trunks we were looking at in the shot? Almost a weathered wood.
My nieces little boy (3 years old) has that done every other week, in his belly. He is such a trooper. My prayers for both of you
I live in Oregon, it rains most of the time.. and sometimes rains when sunshining too. We call it liquid sunshine.. :)
I just adore you guys -- Ollie and Harry included! You have the most incredible way of finding the good in everything. I am truly inspired by the way you exercise gratitude! Praying that the new medication delivery system will work out well for Mary. And... I really like your fence the way it is! It contrasts so beautifully with the vibrant green and dark brown of your yard!
Great news on being approved for Immunoglobulin Therapy! I think that squirrels would try or do just about anything to get at a bird feeder. I love listening to you laugh, Mary. It warms my heart. Blessings to you, Peter, Ollie, and Harry! 🤗❤️❤️🙏🏼😘🐕🐱
Yayayayay!!! Congratulations, Mary, on the approval for SQiG!🥰🌷🐦🌺🐥
I’m on SCIG.... it took 4 years to get approved! I do 5 needles in my thighs once a week. But my team is considering splitting it up to 2 times a week.
Congratulations get something approved is always a victory 🎉.
Redwood stain on the fence is beautiful! We have a lot of redwood fences in California. We also have lots of white, but I don't think that's what you're looking for. Mary, congratulations on finally getting your immunoglobulin therapy approved!!!
I was thinking of a Redwood stain for your fence. I'm happy to here you are once again getting Immuno goblin therapy. After 2+ years my daughter just got her second dose of IVIG this past week. She is juat starting the Journey of IVIG and has done well so far, Thank you for sharing your Journey with it, it has not been scary knowing some of the in and outs.
Here in the U.K., a company called Ronseal make staining for fences. The smoky blue is rather nice! Mary, I am praising G-d that your approval for SCIG has come through. Give thanks to the L-rd for He is good. His mercy endures forever! Shavua Tov (a good week), guys! xxxxxxxxxxxxxxxxx
I love the bird footage. I got to go outside today and I loved seeing all the birds at my bird feeder.
We've usually used an oak color. Most often light to dark oak. We really like the look of it. 😀👍
Don’t worry too much abt giving yourself sub q shots. Not difficult or painful at all. I had to give myself chemo sub q shots for years and the process was fine. Becomes routine. I do know that everyone is dift with needles & all... but also can tell that you are quite a warrior who will handle this effortlessly💪 best of luck & pray you have no bad reactions that you are worried abt
Your poster should say "I vertex can!"
Thanks for this vlog . Harry trying to crawl under the blanket made me laugh, Mary doing her bird siting reactions made me laugh so hard. And then you discussing your issue with getting your medication and treatment sorted out when moving to another state, made me feel not so alone, as I to have moved states, as I have mentioned before. I have been dealing with my new Doctors having different options on the medications that I was on and wanting me to change them, which I have been finding very difficult, as I found the medications I was on were working well for me and now I am in a position where I'm between medications and am feeling rather crummy. whilst still trying to trust my new Doctors. You have this nack of putting things into perspective for me, so once again Thank You.❤️🇦🇺
Love watching my birds
The yard looks good. Keep up with the hard work, Peter.!!!!! ❤❤
Y'all need to put a squirrel feeding box out nuts and seeds.
Good news about the drug program. And yes, I love watching birds at my feeders. You could probably rent Peter out for yard work!
Yay! SQIG! At least for people with Mast Cell Activation Syndrome (a type of allergy disorder where mast cells are overreactive), SQIG tends to be better tolerated than IVIG so I wonder if it would be the same for you? Obviously everyone is different though. I hope it goes well and I’m so glad you have access to this treatment again!
I have been doing SUBQ IG since 2008. I have had the 2 and 3 needles set up that normally go in the abdomen to do it. They are small needles. You numb up the area, put the needles in, put the tegaderm patches over it and use an infusion pump to push the SUBQ through. Your infusiont pump depends sometimes on what SUBQ IG you use. I use Gammagard now but have used others. I do mine every week. You can also put it in the back of your arm, your leg, or any fat pads at your love handles.
You are making good progress on your yard - it is going to look awesome!! Mary, when you were whistling, it sounded like the bird was talking back to you. Thanks for sharing your day - have a great weekend!!
Hi Guys , For all the furniture I have designed and built , I have always used 1 < ONE > , 'signature color' Minwax 210b Golden Oak. Wether the wood is pine or poplar or oak // maple , whatever , the natural grains really show through and the wood seems to brighten right up. Of course after staining you would need a coat of semigloss polyurethane , ( basically a plastic coating ) for that effect outside , gloss would be no good and a satin finish would not be as good either. Trust me , it will look amazing !! , Backyard looking great , good luck with new meds , TY for the video , take care , Gary
I loved this vlog! Good news for the Subcut IG and "gasping at birds" gave me a huge smile.
Hey Peter, Regarding Stain. Take a sample piece of wood to the hardware store. Some stores will have samples of stain on different types of wood so you can see what it looks like on yours. Best way to tell also buy a few small cans of your favorite one and try on scrap pieces of your fence. P.S. I like Wendy Lawton's s suggestion here. I was thinking the same when I was looking at your yard.
Not sure if you would like it, but I love the deep red/brown tones for fences. Almost like mahogany (I know thats also a specific type of wood). Its a gorgeous color. Loving that your getting what you need Mary! Sending prayers to you guys ❤
Mary, I am sorry to hear about the setback. Peter, the Yard is looking good.
We are in the midst of a remodel (for the past 4 years,)
We have some "temporary " boards on the railing of our deck, and they looked like your fence a couple years ago, and now they are a weathered grey. I kind of like the Color because it blends well.
To adorable you two, Mary’s giggle and Peters smile , love your vlogs , watch everyday ❤️🥰🌼🌷🌸🌻
My son and I both have major immune deficiencies and I have multiple autoimmune diseases. We started on IVIG, he switched to SubQ and was on it for awhile and didn't like it, he ended up going back to IVIG with a port. I tried sub q for awhile and didn't like it either. I prefer the IVIG through my port. Now I didn't tell you all of this to scare you. There are alot of people that love Sub Q for it's flexibility because you can basically work around your own schedule when you want to do it, you also have the flexibility with sub q to take it with you on trips or vacations just like you would any other meds, versus IVIG that you have to do at home with a nurse or at the hospital by appointment. The needles with the sub q are small, and don't hurt to bad, depending on what brand of med you are on, they can be placed in your stomach,back of arm, love handles, and upper front of your legs. I am glad you were able to get approved, I know how hard it is because most insurance companies fight it because the meds are so expensive. I pray the Sub Q works great for you 😁
Mary I find it funny, you and Peter love watching and vlogging birds and I love watching and taking pictures of the squirrels in my backyard.
Mary! I LOVE your floral bedroom bin?! I’m so feeling that vibe and soo want one for my bedroom! But I live in the UK ❤️🌈🙏
Maybe you could get a squirrel feeder to feed the little guy so that he doesn't bother the birds food.🤔😊
Peter, look at your dirt in the yard and the tree bark. Buy a stain that matches the tone of those.
For Peter and the fence, put brown color on it so it will match the malch and go great with green leaves on trees.. and Mary, wohoooo for immuno therapy, keeping my fingers crossed that it all goes well :)
if you can find enough used motor oil and paint it on the fence it makes it so pretty that is what we do in the country it leaves the wood well perserved and only needs done once every few years
Your yard is looking really nice. Love the birds. Hope little Mr. Squirrel wasn't able to get to the bird houses. He's cute to. He was funny like he didn't know what to do, lol.
Love those birds.
Glad your medication stuff is getting sorted out Mari.
Have a great Week!🐕🐈🐦🐦🐿🐇🌞🌺🌻
Wow guys, your back yard is looking awesome!! So happy that your SCIG was approved, yay!! Praise God! ...The color of fence stain next to natural is called Honey Maple, it's a beautiful color!....You both look great, stay safe & God Bless...Hopefully your squirrel issue will be good :) :) :)
Hi Peter and Mary I think the same colour of your decking would be nice for your fence it would look lovely against the bark of the trees and the green of the grass just a suggestion.
Mary, you are the cutest! I love birds too. I always get so excited when birds come to my feeder...and my cat loves it too! 😻
Might have to keep you two quarantined. You're having tons of fun with your dirt and birds.🤣😂🤣
I get it....about the birds. I am sitting on my deck in Central Illinois and just saw a beautiful red oriole.
Could you hover the drone overhead/above and take the Trikafta thank you photo like that. Would that work?
I'm in Florida where the state law requires that IVIG be given in the doctor's office. For the past 12 years, every 4th Monday is my "chemo Monday" .January 1st my insurance company decided to not approve it for my CLL (chronic lymphocytic leukemia). Finally in March it was reapproved due to my oncologist telling them over the phone and in writing that my infusions are a life or death situation.
Mary during your 4years of doing them at home which drug were you taking? My IVIG drugs have been switched at times due to world wide shortages. Monday I'm expecting it to be Octagam, but it may be the Gammagard again. One of them takes 4+ hours to drip into my port where the other one takes just under 3 hours. Which ever one, it's a long day for me since I live an hour away from my doctor's office plus the pre-meds of benadryl and pepcid take 30 minutes after my bloodwork is approved.
Good luck with the new way of doing it. You are going to keep your port in case of needing antibiotics aren't you?
good luck with the new therapy hope it works out for you on the fence pine would be a nice color
Great News!! I'm really happy for you Mary! That little Squirrel is determined!!
He is so cute!!
The yard is looking good Peter!!
Great video guys! 🥰
You guys were so cute gasping at the Birds!! 😁
For the sapling shock cut off half of each leaf and make sure it gets enough water. Maybe move it out of the sun and wind. Good luck!!!
How do u Handel medical cost And prescription cost. Is it covered under the state?
H, I hope you have got the IG by now. Sub Q is a breeze. In Not America, where I live, I have to draw up the medicin myself, put the syringe in a pump/feeder and having it going in during 30 minutes. I do 50-60 ml weekly and have done so for... say around 5 years or so. My syringes only takes 20 ml so I have to switch out the syringes a couple of times, and as it's uncomfortable to do more then 30 ml in the same spot ,for me, I generally use two needles. It's great. I have only had two to three pneumonis per year after we figured out how to manage my whole medical situation. Before that I had a more or less continuous pneumonia that only changed location between the X-rays and more or less rented a room at our infectious disease wards. I'm glad that you can get it through your insurance as it's ridiculously expensive. I get mine through our NHS like system, which I appreciate very much. Stay safe and stay sane everyone. Yours, Ann
I just love you guys. Your voices and personalities sooth me. Hugs from iowa
I was on IVIG (for my Immune Deficiency) in 2018 but stopped because of symptoms. I am also going to be doing Sub Q. I have the medication and everything I am just worried about a nurse coming in to my house right now. The re-approval time is crazy considering you have been on it before.
I’m glad I’m not alone. I called sour kraut “pickled cabbage” and my mother laughed at me... lol.. It’s the same thing..
It’s not the same thing. Sauerkraut is fermented with live organisms, whereas pickled cabbage gets its sour flavour from vinegar. Most store bought vinegars contain sulphites, which pretty much kill live organisms. Sauerkraut is healthier for you because of that. Just a little fun fact. 🥰
Love love it when Mary giggles peter you are working wonders in the yard and colour my daughter did hers a lovely grey which would suit your house and deck
When I lived in MN and we got rain when it was sunny, we called them sun showers. I now live in the Rockies, and with such huge horizons and the fact that we're on the edge of a mountain range, I wouldn't go so far as to say it's common, but it's also not exactly rare, that we get rain from a cloud blow onto us, even though we're in the sun - we got one just a couple days ago.
I’m currently in the hospital for a severe gastroperesis attack. The first day when I was directly admitted, the lady told me that my SD Jake wasn’t allowed in my room, nor did they allow any visitors at all. And someone has to be in my room to care for Jakes needs and watch him when I can’t.
Well I knew this wasn’t allowed so I told my daughter not to leave. After a few hours Jake my medical service dog, and my daughter, were allowed up to my room. It was so so horrible and I just wanted to leave and go under home. Well he is currently laying on my hospital bed happily, and my daughter is pretty much living here as his caretaker. It just was something that didn’t need to happen had they known the law.
They have a no visitor policy all over due to new cases of c-19
So sorry you're having a rough time at the moment, I'm thinking about you from here in the UK, and hope your flare is in control soon. Xx
Kim Wilding thank u so so much. Now I have a fever so it’s not good. This Is a hard hard time to be inpatient. No visitors r allowed at all. They r allowing one person to be here when Jake my service dog is here.
They have put a new NG tube in for me to go home with. I can vent with this one too.
I just want to be home with my other dogs and kitty......even my fish. Lol. I want to just sign myself out.
When I first started sub q immunoglobulin replacement therapy a nurse came to my house to show me how to do it and everything. I infuse once a week and she came for 4 weeks. After that I was on my own with it. I use Cuvitru.
Pray subq works for you. I started subq Hizentra back in September. I dont have the side effects with subq like I had with IVIG that I was on for three years prior. My doc has me do it every day!
you can see how hard Peter works in the garden if you look at his hands more closely while he talks about the color of the fence😊 .... his fingers are already working through the gloves😂😂
Since we have moved to the mountains of WV, we see Bald Eagles, Golden Eagles,White breasted Nuthatches,Hooded Warblers,Brown Thrashers, just learning all kinds of new birds to us! So fun!
In the Carolina's we refer to those as sun showers
Yay!! So happy you got things figured out.
It’s a brand new fence buy next summer it will start to darken. Sealant might be a good idea. So it will last longer.
I like Peter in fast motion! Lolllll! How is the rash he had doing?
I'm glad this is finally over, you guys are smart enough to get this done. I wonder, is this the same type you sister is using? just curious.
The more opacity the stain has, the longer it lasts ( it will have more uv protection). Semi transparent will have more protection than a transparent stain, semi-solid more than that, etc.
Thompsons Water Seal tinted stain is easy to work with. I used the natural cedar so it's a little red, but it comes in a few different colors. Got mine at Walmart.
Amen!!!!!been praying since it had to stop. 🧡🧡🧡🧡🧡🙏🙏🙏🙏🙏🙏🎉🎉🎉🎉🌟🌟🌟🌟🌟
Birds! 😱😉🐤🐦💞 Your laughter warms my heart
Put a topper on soda cans left outside. Bees and bugs like soda too!! 🐝 🐜 🥤
Hi guys!! Mary I was wondering if I could ask you a question? I was recently put on Pancreatic Enzymes. I know you take them as well. I though back in Boston you had said which kind you were on so I was wondering if you could share which ones again that you are on and do you have any issues with them? Thank you for your time. I’ve been following for quite awhile now. I have so many severe health problems and I’m still heading down hill. I do have Celiac Disease, Malabsorption Syndrome and also had the Bariatric Sleeve done. I also have Severe Uncontrollable Asthma and Asthma induced COPD!! Thats just a very small background into my health. Thank you guys for you do. I’m so blessed to be on this journey in life with you! Congrats on finally getting Immunoglobulin back!! 🙏🏻🙏🏻❤️❤️ Im from Upstate NY if you wanted to know.. Stay blessed and sending loves!!!
She has used Ultrase for decades without issues.
I am so happy for you been trying to get this for months.
I love the room so far 😃 ya'lls room. Beautiful!
Thanks for bringing a smile to me today 😊💕
On your fence you could use tongue oil it doesn’t stain the wood it just protects it and gives it a little shine you should check it out thank you for your videos
It’s not “it” as in a singular needle, but “them” as in multiple. The number is dose dependent.
Personally I used 6 at a time. The first is the worst. You will get used to it.
Hizentra was not good for me. Gamunex was. Every body is different.
I used my belly and outer thighs. Alternated locations each cycle.
callyflower I agree! I’m on 5 needles. Started with hizentra and just got switched to Gamunex and am doing much better!
callyflower Hi were you on gamunex IVIG prior to sub q? When you went on sub q gamunex did you feel the same as when you did ivig. I switched from ivig gamunex to Hizentra and its not as good as gamunex ivig for me.
callyflower also do you do it weekly. Gamunex sub q site mentions every 3-4 weeks but I’m not sure that’s what most people do vs. weekly Hizentra
Please guys, make sure you check on that treatment plan B4 you move forward. Some years ago my daughter had (at that time ) a rare disease called Auto-immune Netropenia, she was one of the 1st case found in a living child. She was treated with Bactrum and something else and doing well. All childrens hopital wanted to try Immunoglobulin as a test on her. Our commercial Insurance did not cover it so it would be 30K out of my pocket, with out any hard evidence that it would work, we chose to pull her out of that program and stay the course of treatment until she reached puberty. At that time The disease went into remission as it still is today, she was 6 when we stopped them from doing the treatment, she just turned 42.
But Mary has been on IVIG for many years. This isn't really a new treatment plan, just an edited treatment plan. They switched IVIG to SCIG. That's all.