The Long Hold Support Group

[[ja...]]

ThanK you trishy for your last post

It is good to know that people felt better as they held

 

I can't believe how bad is my pms

I hope I won't be this bad as long as I am.not tapering.

I will never visit other part of BB. This is the safe space to be. Although i.might be the worst case in this group right now.

Any time Jasmine. You will get better with time. I got worse during my hold then turned a corner and gradually got better and better. Don't forget benzos have a lag time in wd. Previous cuts during a hold catch up to you during the hold. It's like climbing one side of a mountain and coming down the other side. While you're climbing up the benzo  mountain during a hold you feel like it's getting harder and harder and then you crest or reach the top and things turn around. You start coming down the other side feeling better and better until you stabalize. Just hang in there and don't give up on the hold. Please forget the word tolerance it doesn't apply to what you're going through right now.    :smitten:

I can't wait to come down the other side feeling better and better.

[[Ma...]]

You are right stut. I should limit my time on this forum.

I am scared that if I hold.I won't stabilize because of tolerance. I am scared of kindling. I feel like the worst case on here. My shake is back and I am worried that it is not linked to my hormones but to tolerance.

So much fear.

 

Jasmine, all I know is that when very unstable, if you start tapering you get worse. I really don't believe in tolerance withdrawal much. We're ALL in tolerance. It means after so many years, the drug no longer works. That's all it means. You have better days. My take would be to hold and wait for more better days. And as you're so scared, I'd stick to this group and the game boards. I believe you'll get better if you hold. I think anything other than holding could make you worse right now.

 

You nailed it V. You said in one sentence what I was trying to say in 2 paragraphs. Glad your feeling better-ish.

 

You too Trishy

 

Hey Jwl! Thank you for acknowledging my post. Sometimes I think I'm invisible 

 

I got up an hour ago and I'm having my breakfast and I finally got to post on my PC and not the phone, so this post won't be lost.

 

I love laughing too though with all this stress we don't laugh so much lately. We've been watching The Windsors, my daughter and I, I highly recommend it. It's hilarious, and I love that British accent. As for singing, not to brag but I have to say I'm a great singer. When I was a teenager I would go go camp and at night we'd gather around the campfire, forty people or so, and everyone would be silent to hear me sing. I'm very shy but I have a great voice. I don't know if I've lost it because I haven't really sung since my twenties. Every boyfriend I had laughed at my singing and I slowly stopped doing it. Now my daughter tells me to sing but the walls are made of paper here and the neighbors would hear it and I'm very self conscious about it. Sometimes we sing in the car, my daughter and I. Her voice is even better than mine, but she doesn't believe it. She's just amazing. Now we quarrell more because of course after months barely relating to anyone, just her and me, and being a teenager, it's normal to quarrell, and with all this stress. But I think I'll manage the situation well because I love her to pieces.

 

I love it that you shared your singing and laughing with us. If we all lived in the neighborhood we could get together and form a band, or a choir. With a very original name, like "The Long Holders" 

 

I love your long posts but sometimes when I want to answer you guys, not only you, my phone gets blocked and I lose the post. It happens a lot. The other day answering Stutt, another one I wrote to Ginger thanking her for her dizziness post. My previous phone was much worse than this one. That was a Hwawei. It was good but had little memory so I couldn't have many apps. So I bought this one, a Samsung A50. It's really good and plenty of space for apps. However, it has this problem with BBs, it doesn't seem to like it. Oh well. Jwl, what songs do you sing? Yesterday I watched this one on youtube and I thought about our group, so this goes to all you guys because it really describes what we have here. I almost cried listening to it, although I didn't really cry because I'm incapable of crying, but the tears wanted to come out.

 

https://www.youtube.com/watch?v=Io6HwRadjU4

 

I have Alexa play my fav music while I shower and most times I sing my lungs out.    Love Alexa!

:D

[[Gi...]]

Gingermint I'm sorry you have this too. Do these periods last very long for you? This started for me about two months ago. I used to have more fear. Now the fear has some what diminished although it's still there, and I'm blessed with this new symptom.

 

Sometimes it will last all day.  Sometimes I feel great and it will come on very quickly often accompanied by head pressure.  Then I may go days or weeks without and it will resurface again.  In 2018 I did  seven month hold and it and all wd sx went away until I started to taper again.

 

It is common for sx to come and go, be replaced by different sx and then resurface much later.  It's a crap shoot.  I just read an article by a doctor in the UK.  He said it takes the brain and CNS two years to heal after all of the drug is out of your body,  but that generally every month gets a bit better.  Of course this could vary person to person.  G

 

Gingerming I tried to answer to this post a few days ago and my phone just made it impossible. OK thanks for the input. Funny enough, the past two days I had almost no dizziness, when I already thought it would never leave. And what you say is the same for me: first the head pressure and immediately the dizzines, as if one were the consequence of the other. It must be the brain trying to fix things in there, right? I also held seven months. I definitely got better but no way did all the symptoms go away in those seven months. Of course I came from a terrible benzo crash, perhaps I should've held a year or even two, like Olive and Jwl have done.  Gingermint I hope you're feeling better and able to work out in your garden. I don't have a garden but it seems like such a nice thing to do and out in nature. About one of the most real things we can do in this unreal world we have today. So much screentime is driving us all crazy. What do you grow in your garden? The way the world is heading, I wish I had a house off grid with an orchard and a few animals and a well. I don't trust this system anymore.

Hi V,

I had a good day yesterday.  Then an hour after my 7 pm dose I could feel wave coming on.  Got a few hours sleep but feel tired today with usual sx.  Oh well.

My garden is my sanctuary and gives me something to focus on.  I planted garlic, onions, beans, winter squash, summer squash, peppers and potatoes.  Garlic is harvested and cured as well as first planting of onions.  I'm canning beans and making zucchini bread.  Digging a hill of potatoes as I need them.

 

I got a great buy on organic peaches and have canned them and made peach butter.  More to do today.  Peaches don't wait for me to have a good day.  They are ready now.

 

I like to think the worse the sx means more healing.  That helps me and knowing they will pass.  I hope your dizziness stays away for a good long time. G

 

[[va...]]

Gingermint I'm sorry you have this too. Do these periods last very long for you? This started for me about two months ago. I used to have more fear. Now the fear has some what diminished although it's still there, and I'm blessed with this new symptom.

 

Sometimes it will last all day.  Sometimes I feel great and it will come on very quickly often accompanied by head pressure.  Then I may go days or weeks without and it will resurface again.  In 2018 I did  seven month hold and it and all wd sx went away until I started to taper again.

 

It is common for sx to come and go, be replaced by different sx and then resurface much later.  It's a crap shoot.  I just read an article by a doctor in the UK.  He said it takes the brain and CNS two years to heal after all of the drug is out of your body,  but that generally every month gets a bit better.  Of course this could vary person to person.  G

 

Gingerming I tried to answer to this post a few days ago and my phone just made it impossible. OK thanks for the input. Funny enough, the past two days I had almost no dizziness, when I already thought it would never leave. And what you say is the same for me: first the head pressure and immediately the dizzines, as if one were the consequence of the other. It must be the brain trying to fix things in there, right? I also held seven months. I definitely got better but no way did all the symptoms go away in those seven months. Of course I came from a terrible benzo crash, perhaps I should've held a year or even two, like Olive and Jwl have done.  Gingermint I hope you're feeling better and able to work out in your garden. I don't have a garden but it seems like such a nice thing to do and out in nature. About one of the most real things we can do in this unreal world we have today. So much screentime is driving us all crazy. What do you grow in your garden? The way the world is heading, I wish I had a house off grid with an orchard and a few animals and a well. I don't trust this system anymore.

Hi V,

I had a good day yesterday.  Then an hour after my 7 pm dose I could feel wave coming on.  Got a few hours sleep but feel tired today with usual sx.  Oh well.

My garden is my sanctuary and gives me something to focus on.  I planted garlic, onions, beans, winter squash, summer squash, peppers and potatoes.  Garlic is harvested and cured as well as first planting of onions.  I'm canning beans and making zucchini bread.  Digging a hill of potatoes as I need them.

 

I got a great buy on organic peaches and have canned them and made peach butter.  More to do today.  Peaches don't wait for me to have a good day.  They are ready now.

 

I like to think the worse the sx means more healing.  That helps me and knowing they will pass.  I hope your dizziness stays away for a good long time. G

 

 

Wow, Gingermint you are certainly self sufficient, at least as far as food is concerned. It sounds like you are so connected to nature. That must give you a lot of peace. Can you eat all of that or are you able to sell some of it or do you have to give it away? I mean it's good to help other people but if you're not rich, it would be good to be able to sell some. You just need some solar panels, a well, a few hens, a cow, and you're off grid!

 

I don't have a garden, I live in a flat and anyway I wouldn't have time to grow anything. But I'm thankful that I walk out in nature almost every day. Now in summer we go in the evening. I have a forest nearby, and then another pine forest with a canal and a little dam. It has ducks, fish and turtles. The turtles are obviously abandoned pets, but they seem to be doing quite well and getting huge. We take bread and feed them bread and they devour it. We used to take peas and other health food (like we saw on the internet) but they weren't too keen on it.

 

 

[[va...]]

Mary I'm so glad you enjoy singing in the shower. That means bwd hasn't taken the joy out of your heart 

[[...]]

V, I love British movies too. They're so witty. I like the way they talk. I'll have to check out the Winsors.

 

Love the song you posted. I like R&B too. I also like classic rock especially the bluesy, folksy stuff like: Crosby, Stills and Nash, Eric Clapton, Tom Petty, Joe Cocker.

 

Mary I love Alexa too. Whatever song pops into mind, you just tell her to play it

[[Ma...]]

Gingermint I'm sorry you have this too. Do these periods last very long for you? This started for me about two months ago. I used to have more fear. Now the fear has some what diminished although it's still there, and I'm blessed with this new symptom.

 

Sometimes it will last all day.  Sometimes I feel great and it will come on very quickly often accompanied by head pressure.  Then I may go days or weeks without and it will resurface again.  In 2018 I did  seven month hold and it and all wd sx went away until I started to taper again.

 

It is common for sx to come and go, be replaced by different sx and then resurface much later.  It's a crap shoot.  I just read an article by a doctor in the UK.  He said it takes the brain and CNS two years to heal after all of the drug is out of your body,  but that generally every month gets a bit better.  Of course this could vary person to person.  G

 

Gingerming I tried to answer to this post a few days ago and my phone just made it impossible. OK thanks for the input. Funny enough, the past two days I had almost no dizziness, when I already thought it would never leave. And what you say is the same for me: first the head pressure and immediately the dizzines, as if one were the consequence of the other. It must be the brain trying to fix things in there, right? I also held seven months. I definitely got better but no way did all the symptoms go away in those seven months. Of course I came from a terrible benzo crash, perhaps I should've held a year or even two, like Olive and Jwl have done.  Gingermint I hope you're feeling better and able to work out in your garden. I don't have a garden but it seems like such a nice thing to do and out in nature. About one of the most real things we can do in this unreal world we have today. So much screentime is driving us all crazy. What do you grow in your garden? The way the world is heading, I wish I had a house off grid with an orchard and a few animals and a well. I don't trust this system anymore.

Hi V,

I had a good day yesterday.  Then an hour after my 7 pm dose I could feel wave coming on.  Got a few hours sleep but feel tired today with usual sx.  Oh well.

My garden is my sanctuary and gives me something to focus on.  I planted garlic, onions, beans, winter squash, summer squash, peppers and potatoes.  Garlic is harvested and cured as well as first planting of onions.  I'm canning beans and making zucchini bread.  Digging a hill of potatoes as I need them.

 

I got a great buy on organic peaches and have canned them and made peach butter.  More to do today.  Peaches don't wait for me to have a good day.  They are ready now.

 

I like to think the worse the sx means more healing.  That helps me and knowing they will pass.  I hope your dizziness stays away for a good long time. G

 

 

What a great sounding garden GM, and a lot of work.  That's really good for you, doing something you love 🙋🏼🙋🏼. 😘😘. 🙏🙏. 😷😷

[[Ma...]]

Mary I'm so glad you enjoy singing in the shower. That means bwd hasn't taken the joy out of your heart 

 

I sing awful Vali, lol, lol.    Just ask Sly    But it's never stopped me from singing 🎤  :laugh:

[[...]]

Ginger I don't know what I'd do without my garden. There's something miraculous about watching things grow. I have a big garden too: green beans, tomatoes, yellow squash, zucchini, corn, cucumbers, peppers, orcra. There's nothing like vine ripened tomatoes. It makes the store bought ones taste like wax. I also have fruit trees: preaches, apples, pears, cherries, persimmon, apricot, grapes, figs

[[ki...]]

Mary I'm so glad you enjoy singing in the shower. That means bwd hasn't taken the joy out of your heart 

 

I sing awful Vali, lol, lol.    Just ask Sly    But it's never stopped me from singing 🎤  :laugh:

 

I have a particular song that I sing for Sachi in Japanese and she sings back to me, it’s the only song she does it to. I’m not sure if it’s because I’m singing in “her” language or because I’m that terrible. 

[[Gi...]]

 

Ginger I don't know what I'd do without my garden. There's something miraculous about watching things grow. I have a big garden too: green beans, tomatoes, yellow squash, zucchini, corn, cucumbers, peppers, orcra. There's nothing like vine ripened tomatoes. It makes the store bought ones taste like wax. I also have fruit trees: preaches, apples, pears, cherries, persimmon, apricot, grapes, figs

 

Jwl,

How fortunate you are to have an orchard.  I have raspberries and blackberries but no fruit trees.  My tomatoes are just beginning to turn.  It's been a weird gardening year.  The cucumbers are prolific though.  I share what I can with my daughter and friends and neighbors.

 

Besides the summer squash I have delicata, spaghetti, butternut and pumpkins.  The pumpkin is a surprise volunteer.  Don't know where it came from.  The garden always surprises me.

 

If you have a persimmon tree you must live in a warm climate.  We had one when I was growing up.  I love persimmon cookies but persimmons are hard to come by here.  When I do find them, I buy as many as I can and freeze the pulp.

 

Mary, the garden is so much work but I love it.  It's good exercise and every year is different depending on the weather.  I'm not sure I will plant one next year.  If I jump from ativan the end of the year I may not be up to the planning and work it takes.

 

I hope you are all having a better day than I  am.  All the usual sx are back, but I sure loved yesterday's window. G

[[Ma...]]

Mary I'm so glad you enjoy singing in the shower. That means bwd hasn't taken the joy out of your heart 

 

I sing awful Vali, lol, lol.    Just ask Sly    But it's never stopped me from singing 🎤  :laugh:

 

I have a particular song that I sing for Sachi in Japanese and she sings back to me, it’s the only song she does it to. I’m not sure if it’s because I’m singing in “her” language or because I’m that terrible. 

Send that to Funny Video and I will vote for you and happy dog  :D

[[...]]

Ginger, I love gardening, being outside with nature. I don't mind the work, it keeps me busy and distracted. It's good clean/dirty fun. And it's great to be able to give produce to neighbors and friends.

 

I live in New Mexico and although it's a southern state I'm at 6,000 ft elevation so it does get cold in the winter. I just got the persimmon this year and it's only 2 years old. I've got it in a big container and plan to put it into the greenhouse I just built come winter. I have 2 fig trees that never produce because they die back every winter so I dug them up and put then into pots too. I'm really excited about the greenhouse because I hate not being able to garden in the winter.

[[Gi...]]

Ginger, I love gardening, being outside with nature. I don't mind the work, it keeps me busy and distracted. It's good clean/dirty fun. And it's great to be able to give produce to neighbors and friends.

 

I live in New Mexico and although it's a southern state I'm at 6,000 ft elevation so it does get cold in the winter. I just got the persimmon this year and it's only 2 years old. I've got it in a big container and plan to put it into the greenhouse I just built come winter. I have 2 fig trees that never produce because they die back every winter so I dug them up and put then into pots too. I'm really excited about the greenhouse because I hate not being able to garden in the winter.

 

A greenhouse?  I'm green with envy.  I grew up in California, our persimmon tree was huge.  We had figs too and oranges.  I learned gardening from my parents, we always had a huge one and we kids had to help with it.  There is something so satisfying about working with the soil and growing my own food. 

 

Happy gardening. Ginger

[[...]]

Ginger, I love gardening, being outside with nature. I don't mind the work, it keeps me busy and distracted. It's good clean/dirty fun. And it's great to be able to give produce to neighbors and friends.

 

I live in New Mexico and although it's a southern state I'm at 6,000 ft elevation so it does get cold in the winter. I just got the persimmon this year and it's only 2 years old. I've got it in a big container and plan to put it into the greenhouse I just built come winter. I have 2 fig trees that never produce because they die back every winter so I dug them up and put then into pots too. I'm really excited about the greenhouse because I hate not being able to garden in the winter.

 

A greenhouse?  I'm green with envy.  I grew up in California, our persimmon tree was huge.  We had figs too and oranges.  I learned gardening from my parents, we always had a huge one and we kids had to help with it.  There is something so satisfying about working with the soil and growing my own food. 

 

Happy gardening. Ginger

 

I'm from San Diego originally and that's one thing I miss, that everything grows year round. I miss the tropical flowers and fruit

[[NJ...]]

Mary I’ve been looking for your posts to see what happened with that dr. appointment. I think the heart is fine? I really hope so. I’m also very glad that you found a med that helps with the reflux. I wonder how your knees and back are doing lately? Are you still planning to hold for a year? Frankly, if you notice any improvement in your muscle stiffness with a one-two month hold, I would personally give it much longer to see how much better you can get. What’s the point of tapering if it takes our life away? Just my opinion, I understand the urge of wanting to get on a lower dose too. You’ll do what’s right for you.

 

Kitsune, every time I see your signature and how low a dose you’re on I feel so jealous. I hope your sxs keep getting better and better and I also hope you’re enjoying life with that little angel you’ve been blessed with.

 

Olive Kitty I’m sure you’re out doing fun stuff and living the benzo free life.

 

I’m sure I’ll forget someone but it’s because now there’s so many of us so please don’t take it personally ok? Sending love to Trotshetter, GILLYBLOSSOM, Stutt, NJ Strength, Nova, Blue, and all the friends in the LHSG.

 

Val, thanks for the shout out. Good to see you here.

 

Things here feel better. Son is still not doing well AGAIN, we are almost two years into this journey, but for whatever reason I am less nauseous and sleeping better. Not using the marijuana to help with sleep right now, which is good. Still taking mirtazapine and my .75 mg of klonopin. I think about cutting but since I am feeling better going to just keep holding. Got  a lot of concerning lab results last week so have a lot of follow up to do with that--I am a little concerned about some strange other systems I am having.

 

I am so tired of this virus and its impact on our lives. My husband just went back to work this week for the first time since March, he works for a school.

 

Glad to see a lot of people getting outside. It has been very hot here, and tomorrow looks nice and comfortable so I am going to walk when I can.

 

Take care everyone.

[[va...]]

Hey NJ,

 

It's so nice to see you posting here. I'm really sorry that your son's health doesn't seem to improve much. I can't imagine where you get the strength to cope with it. Your username was really well chosen. I'm very glad you're having less nausea and sleeping better. Marijuana made me very sick when I tried it for sleep though I didn't realize that till I had quit taking it. I know some people find it helpful though. How long have you been on the same dose of k? Maybe you have less sxs due to the long hold? I wouldn't cut now. You well deserve a break in sxs.

 

I don't know what other health issues you're talking about but I hope you go and check yourself please.

 

Thank you for stopping by and telling us how you're doing. Please do the doctor checkups. I know we're going through too much and there's so much to do, but at our age we need to do the check ups. I'm sure you will. 😘

[[bo...]]

My period is due in 6 days. Hooray!  I had a bad patch of anxiety at ovulation this time around, I sped up my taper a little so I think that probably didn’t help. I’m holding now and will hold until my period starts at least. This hormonal rollercoaster is a blast. I never had bad PMS before benzos. Oh well, I’m glad we have this group because non-menstruating humans don’t get it!

I'm also due in about 4 days and already feel the muscle pain , flu like sxs... 

[[Ma...]]

Mary I’ve been looking for your posts to see what happened with that dr. appointment. I think the heart is fine? I really hope so. I’m also very glad that you found a med that helps with the reflux. I wonder how your knees and back are doing lately? Are you still planning to hold for a year? Frankly, if you notice any improvement in your muscle stiffness with a one-two month hold, I would personally give it much longer to see how much better you can get. What’s the point of tapering if it takes our life away? Just my opinion, I understand the urge of wanting to get on a lower dose too. You’ll do what’s right for you.

 

Kitsune, every time I see your signature and how low a dose you’re on I feel so jealous. I hope your sxs keep getting better and better and I also hope you’re enjoying life with that little angel you’ve been blessed with.

 

Olive Kitty I’m sure you’re out doing fun stuff and living the benzo free life.

 

I’m sure I’ll forget someone but it’s because now there’s so many of us so please don’t take it personally ok? Sending love to Trotshetter, GILLYBLOSSOM, Stutt, NJ Strength, Nova, Blue, and all the friends in the LHSG.

 

Val, thanks for the shout out. Good to see you here.

 

Things here feel better. Son is still not doing well AGAIN, we are almost two years into this journey, but for whatever reason I am less nauseous and sleeping better. Not using the marijuana to help with sleep right now, which is good. Still taking mirtazapine and my .75 mg of klonopin. I think about cutting but since I am feeling better going to just keep holding. Got  a lot of concerning lab results last week so have a lot of follow up to do with that--I am a little concerned about some strange other systems I am having.

 

I am so tired of this virus and its impact on our lives. My husband just went back to work this week for the first time since March, he works for a school.

 

Glad to see a lot of people getting outside. It has been very hot here, and tomorrow looks nice and comfortable so I am going to walk when I can.

 

Take care everyone.

 

No Val, I am tapering now, I have gone from 8.3 to 7.8, and hope to get to 7.5 before holding awhile again.  Taking my time though .  You didn't read my tracker at 7.9. , Sly was saying "my mommy is finally out of the 8's.    :laugh:

 

NJ, I am so sorry about your son, please take care of yourself too.  How is your other son doing at college?  🙋🏼🙋🏼😘😘😷😷🙏🙏🙏🙏🙏🙏

[[Gi...]]

Mary I’ve been looking for your posts to see what happened with that dr. appointment. I think the heart is fine? I really hope so. I’m also very glad that you found a med that helps with the reflux. I wonder how your knees and back are doing lately? Are you still planning to hold for a year? Frankly, if you notice any improvement in your muscle stiffness with a one-two month hold, I would personally give it much longer to see how much better you can get. What’s the point of tapering if it takes our life away? Just my opinion, I understand the urge of wanting to get on a lower dose too. You’ll do what’s right for you.

 

Kitsune, every time I see your signature and how low a dose you’re on I feel so jealous. I hope your sxs keep getting better and better and I also hope you’re enjoying life with that little angel you’ve been blessed with.

 

Olive Kitty I’m sure you’re out doing fun stuff and living the benzo free life.

 

I’m sure I’ll forget someone but it’s because now there’s so many of us so please don’t take it personally ok? Sending love to Trotshetter, GILLYBLOSSOM, Stutt, NJ Strength, Nova, Blue, and all the friends in the LHSG.

 

Val, thanks for the shout out. Good to see you here.

 

Things here feel better. Son is still not doing well AGAIN, we are almost two years into this journey, but for whatever reason I am less nauseous and sleeping better. Not using the marijuana to help with sleep right now, which is good. Still taking mirtazapine and my .75 mg of klonopin. I think about cutting but since I am feeling better going to just keep holding. Got  a lot of concerning lab results last week so have a lot of follow up to do with that--I am a little concerned about some strange other systems I am having.

 

I am so tired of this virus and its impact on our lives. My husband just went back to work this week for the first time since March, he works for a school.

 

Glad to see a lot of people getting outside. It has been very hot here, and tomorrow looks nice and comfortable so I am going to walk when I can.

 

Take care everyone.

 

Hello NJ,

I'm sorry your son is still having difficulty.  Unfortunately this is the nature of the Crohns beast.  My brother has had it for over twenty years and I have watched his struggles.  He just manages as best he can, sometimes feeling good, other times not well at all.  The only medication that helps him is low dose prednisone which he takes most days.

 

Nice you are feeling some better.  Sorry to hear about your own health concerns.  Your doctor will get to the bottom of it.  If you are feeling better why not hold and enjoy it?  Tend to your own health and enjoy better sleep and less nausea.  Once a long hold has me feeling better I like to hold another month,  catch up on sleep and enjoy a more normal life before I taper again. G.

 

 

[[ki...]]

Mary I’ve been looking for your posts to see what happened with that dr. appointment. I think the heart is fine? I really hope so. I’m also very glad that you found a med that helps with the reflux. I wonder how your knees and back are doing lately? Are you still planning to hold for a year? Frankly, if you notice any improvement in your muscle stiffness with a one-two month hold, I would personally give it much longer to see how much better you can get. What’s the point of tapering if it takes our life away? Just my opinion, I understand the urge of wanting to get on a lower dose too. You’ll do what’s right for you.

 

Kitsune, every time I see your signature and how low a dose you’re on I feel so jealous. I hope your sxs keep getting better and better and I also hope you’re enjoying life with that little angel you’ve been blessed with.

 

Olive Kitty I’m sure you’re out doing fun stuff and living the benzo free life.

 

I’m sure I’ll forget someone but it’s because now there’s so many of us so please don’t take it personally ok? Sending love to Trotshetter, GILLYBLOSSOM, Stutt, NJ Strength, Nova, Blue, and all the friends in the LHSG.

 

You will get there in time, Vali. Sending you love and light.❤️❤️❤️

[[va...]]

Thank you kitsune 💚. The dizziness is back 🥵 Oh well...

[[NJ...]]

Mary I’ve been looking for your posts to see what happened with that dr. appointment. I think the heart is fine? I really hope so. I’m also very glad that you found a med that helps with the reflux. I wonder how your knees and back are doing lately? Are you still planning to hold for a year? Frankly, if you notice any improvement in your muscle stiffness with a one-two month hold, I would personally give it much longer to see how much better you can get. What’s the point of tapering if it takes our life away? Just my opinion, I understand the urge of wanting to get on a lower dose too. You’ll do what’s right for you.

 

Kitsune, every time I see your signature and how low a dose you’re on I feel so jealous. I hope your sxs keep getting better and better and I also hope you’re enjoying life with that little angel you’ve been blessed with.

 

Olive Kitty I’m sure you’re out doing fun stuff and living the benzo free life.

 

I’m sure I’ll forget someone but it’s because now there’s so many of us so please don’t take it personally ok? Sending love to Trotshetter, GILLYBLOSSOM, Stutt, NJ Strength, Nova, Blue, and all the friends in the LHSG.

 

Val, thanks for the shout out. Good to see you here.

 

Things here feel better. Son is still not doing well AGAIN, we are almost two years into this journey, but for whatever reason I am less nauseous and sleeping better. Not using the marijuana to help with sleep right now, which is good. Still taking mirtazapine and my .75 mg of klonopin. I think about cutting but since I am feeling better going to just keep holding. Got  a lot of concerning lab results last week so have a lot of follow up to do with that--I am a little concerned about some strange other systems I am having.

 

I am so tired of this virus and its impact on our lives. My husband just went back to work this week for the first time since March, he works for a school.

 

Glad to see a lot of people getting outside. It has been very hot here, and tomorrow looks nice and comfortable so I am going to walk when I can.

 

Take care everyone.

 

Hello NJ,

I'm sorry your son is still having difficulty.  Unfortunately this is the nature of the Crohns beast.  My brother has had it for over twenty years and I have watched his struggles.  He just manages as best he can, sometimes feeling good, other times not well at all.  The only medication that helps him is low dose prednisone which he takes most days.

 

Nice you are feeling some better.  Sorry to hear about your own health concerns.  Your doctor will get to the bottom of it.  If you are feeling better why not hold and enjoy it?  Tend to your own health and enjoy better sleep and less nausea.  Once a long hold has me feeling better I like to hold another month,  catch up on sleep and enjoy a more normal life before I taper again. G.

 

Mary, my other son at college is doing very well. School doesn't start until Monday but he has been back since June as he has an off campus apartment and has been doing a lot of hiking. It's sad though we can't go see him as VT is very strict about out of state travelers.

 

Ginger, thanks for sharing the story about your brother. I am having a very difficult time accepting that my son will have to manage like this for the rest of his life, and there may be long stretches like this where he is not well. I am surprised your brother is on prednisone long term, everyone says that is not good. My sister has Crohn's, was very sick for years and had surgery 16 years ago and while she sometimes has issues generally does very well. Most people seem to be pretty well managed. We just started the fifth GI in May and he has helped but I think he took him off too much medication too quickly. He is a good doctor so I am sure we will get to the bottom of it soon. I hope. I think he may need a medication change, which is unfortunate because you really don't know what will work best so it is all trial and error. He goes to college in a year and I feel like he has to feel better by then. I have no idea of how I am going to drop him off somewhere if he isn't feeling well. We did tour one college about three hours from home that I feel would be a good compromise ... it's still within a roundtrip day's drive, some of the other schools are 7 hours away, but the furthest school we do have family there. There are two schools within an hour of home and if he really is not doing well he will need to pick one, he can still live away (I want them for him).

 

I am following up this week on all my medical tests--getting a screening mammogram and ultrasound as they saw something they didn't like, my bloodwork indicated issues with my kidneys, so that I still need to figure out with my doctors. I am very thankful right now to have a job where no one really checks on me much because some days I really don't get much done, I am just doing the best I can. Some of the other issues with my bloodwork come from poor diet and being overweight, and I am working on that more diligently. I have gained a lot when on these drugs.

 

Everyone, stay safe.

 

[[Tr...]]

Hello all,

I'm very upset. My son came over today with my dil and my two grandson's. We were having dinner outside when my son happens to mention that they were SICK all week!!  :tickedoff: I looked at him and said WHATTTT?!  My dil chimed in with we don't have covid, oh really?? How do you know is what I said! She said we don't have fevers just nasal congestion and Cameron has a runny nose. Wtf , I mean really.. Now I'm terrified! I had already held at kissed the baby and hugged my 5 yr old grandson. I will worry all week about them and Rich and myself. I can't believe the lack of common sense! I told my dil who is a medical assistant and a damn good one I might add, she should have known better bc she's so damn smart, that there's a wide range of symtoms with covid. My son said come on mom I'd of been on a vent by now if I had covid bc he has high BP but takes meds for it. So he thinks bc of his health he'd be on a vent if he got it! Are these people f'in dumbies?!! I'm so pissed I don't know where to put all this anger :tickedoff:

We stayed outside the whole time in the deck I didn't allow them in my house only to use the bathroom and that's it. I have to get a grip and calm down but I just don't know how to do that right now 🤬🤬🤬

I just needed to vent so for anyone who read this, thanks for doing so. 😭

Love to all,

Trishy

[[Ma...]]

Hello all,

I'm very upset. My son came over today with my dil and my two grandson's. We were having dinner outside when my son happens to mention that they were SICK all week!!  :tickedoff: I looked at him and said WHATTTT?!  My dil chimed in with we don't have covid, oh really?? How do you know is what I said! She said we don't have fevers just nasal congestion and Cameron has a runny nose. Wtf , I mean really.. Now I'm terrified! I had already held at kissed the baby and hugged my 5 yr old grandson. I will worry all week about them and Rich and myself. I can't believe the lack of common sense! I told my dil who is a medical assistant and a damn good one I might add, she should have known better bc she's so damn smart, that there's a wide range of symtoms with covid. My son said come on mom I'd of been on a vent by now if I had covid bc he has high BP but takes meds for it. So he thinks bc of his health he'd be on a vent if he got it! Are these people f'in dumbies?!! I'm so pissed I don't know where to put all this anger :tickedoff:

We stayed outside the whole time in the deck I didn't allow them in my house only to use the bathroom and that's it. I have to get a grip and calm down but I just don't know how to do that right now 🤬🤬🤬

I just needed to vent so for anyone who read this, thanks for doing so. 😭

Love to all,

Trishy

 

Hey you, I am so sorry that has happened and know you will be worried all week.  I am about to give up wondering how people can think how they think, it's a mystery to me.  They make it pretty damn clear on tv if you just listen.  You keep a close eye out on you and Rich.  Are you sure you should keep the other grandkids for awhile?  What a mess.  I am not sure how you kept from running them off.  Were you distancing and wearing a mask?  If so, hopefully everything will be ok even if they did have Covid.  Whoa, I really don't understand your dil   I worry too about your son drinking and loosing his discipline, that's why bars are such spreaders.  I'm sorry, really if Rich or you gets a fever or any other symptoms, get a test.  I love ya girlfriend.  Praying for all of you.  Get on here and vent or just worry out loud.  We're here for you all the time.  🙋🏼🙋🏼😘😘😘😷😷😷😷🙏🙏🙏🙏

Mary !!