The Long Hold Support Group

[[Ma...]]

NJ, How is your son? xxx

 

Gilly,

 

Just saw this.

 

My son has had more testing since I was last on regularly. They continue to find some irregularity in his digestive system. They don't know for sure if it is Crohn's or not. Doctor started him on a high dose of steroids a week ago, which I was really, really hoping would get him moving in the right direction. It has lessened belly pain a little but he still has no appetite and really bad fatigue. We go back in a week and a half. I am really hoping the steroids kick in. We are all so disappointed. I am barely holding it together to be honest. He has now been sick for seven months. And my mom fell and broke her hip a few weeks back and that means a whole lot of other things have landed on my plate to deal with. I am just very tired and depressed. I just don't know what we do if the steroids don't work. I do think this doctor knows what he is doing it's just that my son's case is atypical, so no one is really sure what to make of it. Every day I hope things are better than the day before; I assume someday they will be.

 

Thanks for asking and hope you are doing well.

 

Oh NJ, I am so sorry about your mom, that is the last thing either of you needed . I will keep all of you in my thoughts and hope each day the steroids help.  Love ❤️ Mary

[[es...]]

NJ, I am so deeply sorry to hear that your son is still so ill and with your mother’s accident it is only natural that you are depressed and totally consumed with worry. Please know I am thinking of you and hoping that the right treatment will be soon in coming. Amazing things can be done now with these rare diagnoses, especially in young people. Sending my love, Esperanza

[[4G...]]

NJ, I really hope the steroids work. This is the hardest thing in the world, but try to take it a bit at a time. Otherwise it will overwhelm you. And you have enough on your plate.

 

You say "What if the steroids don't work?" But what if the steroids do work? I know that's easy for me to say and it is heartbreaking to see this happen in your child. I'm a Mum and I know you wish that you could swap over and have the condition yourself. I get that. But even if the steroids don't work, other steroids might work. Please try to live in " day-tight compartments". I know that is far from easy. But it would help if you could only do it a bit.

 

I hope I don't sound patronising. I do hope something starts to work soon.

 

Love and Hugs.  Gilly xxx 💟💟💟

[[NJ...]]

NJ, I really hope the steroids work. This is the hardest thing in the world, but try to take it a bit at a time. Otherwise it will overwhelm you. And you have enough on your plate.

 

You say "What if the steroids don't work?" But what if the steroids do work? I know that's easy for me to say and it is heartbreaking to see this happen in your child. I'm a Mum and I know you wish that you could swap over and have the condition yourself. I get that. But even if the steroids don't work, other steroids might work. Please try to live in " day-tight compartments". I know that is far from easy. But it would help if you could only do it a bit.

 

I hope I don't sound patronising. I do hope something starts to work soon.

 

Love and Hugs.  Gilly xxx 💟💟💟

 

Gilly,

 

I know I have to do a better job of taking it one day at a time. This will be the topic of the day tomorrow with my therapist.

 

The problem is the steroids should have worked almost immediately and they haven't; it's been a week. We just needed him to have some good days and those don't seem to be coming. After nearly 8 months, we just need for him to feel better. It's exhausting. I am taking a sick day today as I did not sleep at all last night.

[[Ma...]]

Good morning LHSG, rise and shine ☀️☀️☀️☀️☀️All over the world 🌎 Love you , hope you have a good day, Mary.  💎💙🙏💎💙🙏

[[St...]]

Good morning LHSG hoping everyone has a better day.

Lady Mary how is the exercise going have you got back into it yet? How's my boys are they missing me? love you my lady Mary.

  Free l hope you had a piece of cake at least for your birthday l haven't celebrated my birthday for a few years so l know you are not feeling well enough but l am hoping next year will be better for us both.love you my dear friend.

Intend you will work this out it will take time however she does need you whether she knows it or not.l hope you get some answers today.Sending you a hug.

  Gilly well done for attempting to go out and about perhaps go to somewhere that has few if any bad memories.You can do this.love to you.

  Esperanza keep strong my love anything that is worth a damn is worth fighting for.love you my lovely hillbilly friend.

  Can't leave twiny out or she'll be crying.l hope you are doing well my love and hang tough.love you my lst

  Love and hugs Stut X

[[Ma...]]

Good morning LHSG hoping everyone has a better day.

Lady Mary how is the exercise going have you got back into it yet? How's my boys are they missing me? love you my lady Mary.

  Free l hope you had a piece of cake at least for your birthday l haven't celebrated my birthday for a few years so l know you are not feeling well enough but l am hoping next year will be better for us both.love you my dear friend.

Intend you will work this out it will take time however she does need you whether she knows it or not.l hope you get some answers today.Sending you a hug.

  Gilly well done for attempting to go out and about perhaps go to somewhere that has few if any bad memories.You can do this.love to you.

  Esperanza keep strong my love anything that is worth a damn is worth fighting for.love you my lovely hillbilly friend.

  Can't leave twiny out or she'll be crying.l hope you are doing well my love and hang tough.love you my lst

  Love and hugs Stut X

 

Stut, we all miss you.  Your personality brought so much.  The wonderful LHSG gets up kinda late so I usually sign off for a few hours and try again later.  Can't is struggling I think with the new opioid him and his Dr were working on, trying to get close to the same dosage.  I hope we hear something soon.

He is strong but as we all know, he has been through so much for so long.  He is probably TIRED 

How are you ?  Are your sxs under control?  How is sis doing?  Pets and love to all my babies.  I go for my last eye appointment Wednesday and no more damn drops.  6 weeks of drops 3 times a day can really become annoying  .  My back isn't great , but after seeing eye Dr for all clear, plan on going back to pt for a while, .  Working my way slowly down, hope my muscles ease up some .  I am down to 10.72 mgs and it still makes me so sleepy.  Ok, enough about me.  Intend will keep us informed on Cathy.  Know you are missed horribly..........Lady Mary.  🐈🐶🐕🐾🐾🐾🐾🐾🐾🐾🐾💙🙏💎💙🙏💎

[[In...]]

Good morning LHSG hoping everyone has a better day.

Lady Mary how is the exercise going have you got back into it yet? How's my boys are they missing me? love you my lady Mary.

  Free l hope you had a piece of cake at least for your birthday l haven't celebrated my birthday for a few years so l know you are not feeling well enough but l am hoping next year will be better for us both.love you my dear friend.

Intend you will work this out it will take time however she does need you whether she knows it or not.l hope you get some answers today.Sending you a hug.

  Gilly well done for attempting to go out and about perhaps go to somewhere that has few if any bad memories.You can do this.love to you.

  Esperanza keep strong my love anything that is worth a damn is worth fighting for.love you my lovely hillbilly friend.

  Can't leave twiny out or she'll be crying.l hope you are doing well my love and hang tough.love you my lst

  Love and hugs Stut X

 

Stut, we all miss you.  Your personality brought so much.  The wonderful LHSG gets up kinda late so I usually sign off for a few hours and try again later.  Can't is struggling I think with the new opioid him and his Dr were working on, trying to get close to the same dosage.  I hope we hear something soon.

He is strong but as we all know, he has been through so much for so long.  He is probably TIRED 

How are you ?  Are your sxs under control?  How is sis doing?  Pets and love to all my babies.  I go for my last eye appointment Wednesday and no more damn drops.  6 weeks of drops 3 times a day can really become annoying  .  My back isn't great , but after seeing eye Dr for all clear, plan on going back to pt for a while, .  Working my way slowly down, hope my muscles ease up some .  I am down to 10.72 mgs and it still makes me so sleepy.  Ok, enough about me.  Intend will keep us informed on Cathy.  Know you are missed horribly..........Lady Mary.  🐈🐶🐕🐾🐾🐾🐾🐾🐾🐾🐾💙🙏💎💙🙏💎

 

I’m up Mary. Been up for several hours.

 

This may sound unimportant, but our big Samsung microwave stopped heating last night after we got home from the movie.

 

Dan and I went round and round last night about whether to get it fixed or call an appliance repair place this morning. Then we took down the model # and serial #. I finally google Samsung customer support but couldn’t call till this morning. It’s eastern time for the #, so I was able to call right away.

 

I was almost certain we need an authorized repair shop to fix this damn thing, and I’m right. They don’t open till 9 am, and that’s  now. I will wait a couple of minutes to call. Have to weigh the cost of repair with cost of buying a new one. Can’t remember how much this one cost, but we bought  it in 2013 as per Samsung so we’re not under warranty, but the “magnetron” heating element is under a 10 year warranty. Cost now is @450-750 $ so maybe 400$ in 2013. It’s was part of package at Best Buy where we bought new fridge, that stove where everything boils over fast, and dishwasher.

 

Then I must deal with that mental health clinic in south Jordan for Cathy. No more angry email this morning, but I can only imagine how she feels. Never can tell if she’s drinking or what’s going on there. Now I’m checking for those emails everyday like clockwork. Wish she’d get a normal cell phone so she can talk. She uses this one from some person called Trystan, and it’s never clear to me who he is. But that cell phone has problems for sure. One would think I’d have all info needed by now, but her fuzzy phone calls (fuzzy sound that obscures her voice) make it hard to understand a thing, and then she gets so mad that getting any info is like pulling teeth. (Knock on wood).

 

And that man named Dan is still not up. Time to call the microwave place and get that going.

[[es...]]

Good morning, all. It has been my experience, Intend, that home appliances almost always seem to break at times when we are dealing with issues far more important than they are. It is like they are selfish little brats, looking for attention. Today is Monday, so I hope you can get some answers about Cathy. I can understand how handicapped you are with her not having a reliable phone. It must be very hard. Thinking of all of you, Stut, Mary, Gilly, Intend, NJ, Can’t, Free. Love, Esperanza

[[Ma...]]

Good morning, all. It has been my experience, Intend, that home appliances almost always seem to break at times when we are dealing with issues far more important than they are. It is like they are selfish little brats, looking for attention. Today is Monday, so I hope you can get some answers about Cathy. I can understand how handicapped you are with her not having a reliable phone. It must be very hard. Thinking of all of you, Stut, Mary, Gilly, Intend, NJ, Can’t, Free. Love, Esperanza

 

Morning ladies, hope you are feeling decent this morning.  Intend when we redecorated a few years ago, all new Samsung appliances and new washer and dryer for laundry room.  Only one did I consider really good, the oven, the dishwasher sucked and the rest were just average and they were expensive  :tickedoff:going to change brands if these quit working.  Very disappointing.  Let us know what you find out from Cath's Dr today.  I am proud you seem to be keeping your anxiety under control.  You are pretty amazing.  Give Dan and Pepper my loves and pets🌹🌹🌹🐱🐾⚙️🔨⛏

 

Esperanza, how are you this morning?  You have really sounded better the last couple of days.  I hope you are.  Love you cousin.  Mary 💙🙏💎💙🙏💎

[[4G...]]

Hello Everyone. I'm going through a hard time with cutting. Still, I know that others have far more pressing concerns. NJ and Intend, I do hope you both get the breakthrough that you are each waiting for. NJ, I'm so sorry that you still don't know what is wrong with your son. I can't imagine what it must be like for you or him. I know that anything I say will not be enough to make things better. I do wish that I could. Intend, I hope that Cathy gets in touch with you and is being reasonable and rational. The situation with Behcets is bad enough. She has to start communicating with you. Has she got any other reliable support?

 

Thinking of everyone else. Stut, thanks for your wonderful support. Mary, Trishy, Esp, Free, I hope today is okay. Good luck with the exercises, Mary.

 

Cant, if you are reading this, I'm sending thoughts of strength from Blighty.

 

Lots of Love and Hugs.  Gilly xxxxx 💕

[[Tr...]]

Hey everyone,

Just popping in quick to say hello, intend thinking of you and Dan, hope you get answers soon and hoping Cathy will become more cooperative with you and Dan.

 

I had a very busy weekend so I wasn't on yesterday, went to church, out to coffee with two of my sister's then out shopping with my daughter.. Exhausting day! Then this morning had to go for mammogram and breast ultrasound and off to work right after that 🤪 I am happy to say though that my tests were negative so that's done for another year phew 😳.

 

So now waiting for granddaughter to get home from school.. Tomorrow at 4 I see my cardiologist to go over test results that I already know about.. It never ends.. Drs, hospitals, tests.. I'm hoping to get a break after tomorrow for awhile. Although I still have to go for more blood work for my primary care Dr 😬.. And then HOPE to get a break.

 

So that's what's been going on with me! I hope the rest of you have been holding up ok.

 

Stut my twin, yes good thing you mentioned me or I would have been looking something like this 😤🤬😡😵😢.. Hope you are well twin, you are very missed here but we'll take one post a day from you, if that's all we can get right now then we'll take it! 😃.. Love you woman!

 

To sweet D, English, E, Free and everyone else thinking of all of you and wishing everyone well.

 

Love to all,

Trish ❤️

 

[[Ma...]]

Hey everyone,

Just popping in quick to say hello, intend thinking of you and Dan, hope you get answers soon and hoping Cathy will become more cooperative with you and Dan.

 

I had a very busy weekend so I wasn't on yesterday, went to church, out to coffee with two of my sister's then out shopping with my daughter.. Exhausting day! Then this morning had to go for mammogram and breast ultrasound and off to work right after that 🤪 I am happy to say though that my tests were negative so that's done for another year phew 😳.

 

So now waiting for granddaughter to get home from school.. Tomorrow at 4 I see my cardiologist to go over test results that I already know about.. It never ends.. Drs, hospitals, tests.. I'm hoping to get a break after tomorrow for awhile. Although I still have to go for more blood work for my primary care Dr 😬.. And then HOPE to get a break.

 

So that's what's been going on with me! I hope the rest of you have been holding up ok.

 

Stut my twin, yes good thing you mentioned me or I would have been looking something like this 😤🤬😡😵😢.. Hope you are well twin, you are very missed here but we'll take one post a day from you, if that's all we can get right now then we'll take it! 😃.. Love you woman!

 

To sweet D, English, E, Free and everyone else thinking of all of you and wishing everyone well.

 

Love to all,

Trish ❤️

 

Love you too, Trishy 😘😘😘😘😘.    Mary

[[es...]]

Gilly, saw you were cutting again. I hope you have something to remind you of all the window days you have had lately. Put it on the fridge. Hope you won’t need it. Maybe this cut will be kind. Love, E

[[Ma...]]

Gilly, saw you were cutting again. I hope you have something to remind you of all the window days you have had lately. Put it on the fridge. Hope you won’t need it. Maybe this cut will be kind. Love, E

 

Yes, good luck English, I missed that somewhere.  Will be sending easy sxs wishes for you E.  Love you and Tilly 🐱🐾🐾🐾🐾🐾. 🐕 Says licks to his Auntie English.  They are tiny little sweet 👄.

💎💙💜🌼🌷💐

[[Ma...]]

Good night LHSG, sleep well with good dreams, love you all, Mary 💎💙💜💎💙💜.

 

 

Stut if you post , know we love you.  So sorry we missed you, we hate missing you.  Hope you are ok and not working yourself to death.  Love to your sister. Pets and kisses to Socks, The Muffin , and Daisy, but mostly know , you are always in our thoughts.  Love you much, Lady Mary 💚💚💚💚💚.  🐱🐕🐶🐾🐾🐾🐾

[[In...]]

I have managed to get things accomplished today finally.

 

I contacted the south Jordan health clinic, and this time they did not think any appointment should be made for Cathy.

 

A better approach was to notify her doc of her behavior and thought process, watch her and then suggest some intervention and help if she was open to that. And since she has this phone problem, they liked the idea of contacting through email like I have been doing. They had the same phone number and didn’t mention any problems with it, but I can remember getting a call from the westridge clinic where they said they couldn’t reach her and wondered if I could. That was when I was on her contact list because they said she gave me as an alternate contact.

 

When Cathy first got her fibromyalgia Dx, she joined a Facebook group specifically for that, and would tell me about how much she liked it because she was with others who had the same thing and she learned all about it. And finally, I requested that both clinics not let Cathy know that I intervened in any way because she would be furious with me and I want her to accept any help they offer her.

 

Now Im just hoping she lets me come over to Russ’s house and visit so we can calmly talk, and I will email her tomorrow about that.

 

We ended buying  a new microwave at Home Depot and it’s a whirlpool and not a samsung. Dan called Home Depot and asked to speak with Hassan who manages the home interiors department. Hassan recommended that Blake install it (Blake worked at Home Depot for the last year of high school and the first year of college) so it’s up and running. Long day to say the least, and now that Mary has said goodnight to everyone, I will say the same thing. 🌹 ☘️ 🐈 🔨 🔧 🐾 💟☪️🌜⭐️

[[Tr...]]

Hello Everyone. I'm going through a hard time with cutting. Still, I know that others have far more pressing concerns. NJ and Intend, I do hope you both get the breakthrough that you are each waiting for. NJ, I'm so sorry that you still don't know what is wrong with your son. I can't imagine what it must be like for you or him. I know that anything I say will not be enough to make things better. I do wish that I could. Intend, I hope that Cathy gets in touch with you and is being reasonable and rational. The situation with Behcets is bad enough. She has to start communicating with you. Has she got any other reliable support?

 

Thinking of everyone else. Stut, thanks for your wonderful support. Mary, Trishy, Esp, Free, I hope today is okay. Good luck with the exercises, Mary.

 

Cant, if you are reading this, I'm sending thoughts of strength from Blighty.

 

Lots of Love and Hugs.  Gilly xxxxx 💕

 

Hey English,

I was just catching up on some posts before work. Just go slow and listen to your body, you know the drill. Don't push it, just sit tight and hold and let the sxs pass... They will. Patience is the name of this game, as always easier said then done. I will be making another cut this week probably in a day or two and I'm scared as all hell. I will be cutting from my nighttime dose so I'm worried about sleep. So English, hold my virtual hand girlfriend , together we're stronger.

 

Love to you girl,

Trish xo

[[Tr...]]

I have managed to get things accomplished today finally.

 

I contacted the south Jordan health clinic, and this time they did not think any appointment should be made for Cathy.

 

A better approach was to notify her doc of her behavior and thought process, watch her and then suggest some intervention and help if she was open to that. And since she has this phone problem, they liked the idea of contacting through email like I have been doing. They had the same phone number and didn’t mention any problems with it, but I can remember getting a call from the westridge clinic where they said they couldn’t reach her and wondered if I could. That was when I was on her contact list because they said she gave me as an alternate contact.

 

When Cathy first got her fibromyalgia Dx, she joined a Facebook group specifically for that, and would tell me about how much she liked it because she was with others who had the same thing and she learned all about it. And finally, I requested that both clinics not let Cathy know that I intervened in any way because she would be furious with me and I want her to accept any help they offer her.

 

Now Im just hoping she lets me come over to Russ’s house and visit so we can calmly talk, and I will email her tomorrow about that.

 

We ended buying  a new microwave at Home Depot and it’s a whirlpool and not a samsung. Dan called Home Depot and asked to speak with Hassan who manages the home interiors department. Hassan recommended that Blake install it (Blake worked at Home Depot for the last year of high school and the first year of college) so it’s up and running. Long day to say the least, and now that Mary has said goodnight to everyone, I will say the same thing. 🌹 ☘️ 🐈 🔨 🔧 🐾 💟☪️🌜⭐️

 

Hi intend,

I'm glad to read that you were able to talk to someone about Cathy. Sounds like you've done all you can do. The rest is up to Cathy, you've reached out to her  through e mail and you let her know that you and Dan both want to help her so now it is up to her to either accept that help or not. She's 43 and you can't force her to do anything, but the important thing here is that you let her know that she's loved and cared about and that you will be there for her. I hope that you will be able to reconnect with her as I know that is what you would like to have happen. No matter what happens with her intend just never doubt that you and Dan have gone above and beyond for her and have been good parents! Good luck my friend.

 

Lots of love to you and Dan,

Trish xo

[[Tr...]]

Sweet D, my lovely twin, English, E, Free , all others and one hurting spy (((  wishing you all a beautiful day and I would be remiss if I didn't remind you all of what day it is  :D.. Yes that's right people it's TWO FOR TUESDAY RIDDLE DAY!! Sweet D's favorite day!! I'll be back later to deliver the fun! :laugh:

 

Love you all,

The riddler!

Trish xo

[[Ma...]]

I have managed to get things accomplished today finally.

 

I contacted the south Jordan health clinic, and this time they did not think any appointment should be made for Cathy.

 

A better approach was to notify her doc of her behavior and thought process, watch her and then suggest some intervention and help if she was open to that. And since she has this phone problem, they liked the idea of contacting through email like I have been doing. They had the same phone number and didn’t mention any problems with it, but I can remember getting a call from the westridge clinic where they said they couldn’t reach her and wondered if I could. That was when I was on her contact list because they said she gave me as an alternate contact.

 

When Cathy first got her fibromyalgia Dx, she joined a Facebook group specifically for that, and would tell me about how much she liked it because she was with others who had the same thing and she learned all about it. And finally, I requested that both clinics not let Cathy know that I intervened in any way because she would be furious with me and I want her to accept any help they offer her.

 

Now Im just hoping she lets me come over to Russ’s house and visit so we can calmly talk, and I will email her tomorrow about that.

 

We ended buying  a new microwave at Home Depot and it’s a whirlpool and not a samsung. Dan called Home Depot and asked to speak with Hassan who manages the home interiors department. Hassan recommended that Blake install it (Blake worked at Home Depot for the last year of high school and the first year of college) so it’s up and running. Long day to say the least, and now that Mary has said goodnight to everyone, I will say the same thing. 🌹 ☘️ 🐈 🔨 🔧 🐾 💟☪️🌜⭐️

 

Oh, I will be keeping my fingers crossed she is in a receptive mood.  I told Tim you bought Whirlpool this time. 

I don't understand why they wouldn't want Cathy to make an appointment as sick as she says she is, I just don't understand much about this whole thing.  But hoping you get to see her and she is calm and you can get the whole story and an opportunity to understand.  Love you, hope you slept well after the last few days you've had.  Mary 🌹🌹🌹🌹🐱🐾🐾🐾🐾🔨⛏⛓⚙️

[[Ma...]]

Hello Everyone. I'm going through a hard time with cutting. Still, I know that others have far more pressing concerns. NJ and Intend, I do hope you both get the breakthrough that you are each waiting for. NJ, I'm so sorry that you still don't know what is wrong with your son. I can't imagine what it must be like for you or him. I know that anything I say will not be enough to make things better. I do wish that I could. Intend, I hope that Cathy gets in touch with you and is being reasonable and rational. The situation with Behcets is bad enough. She has to start communicating with you. Has she got any other reliable support?

 

Thinking of everyone else. Stut, thanks for your wonderful support. Mary, Trishy, Esp, Free, I hope today is okay. Good luck with the exercises, Mary.

 

Cant, if you are reading this, I'm sending thoughts of strength from Blighty.

 

Lots of Love and Hugs.  Gilly xxxxx 💕

 

Hey English,

I was just catching up on some posts before work. Just go slow and listen to your body, you know the drill. Don't push it, just sit tight and hold and let the sxs pass... They will. Patience is the name of this game, as always easier said then done. I will be making another cut this week probably in a day or two and I'm scared as all hell. I will be cutting from my nighttime dose so I'm worried about sleep. So English, hold my virtual hand girlfriend , together we're stronger.

 

Love to you girl,

Trish xo

 

Wishing you both good luck and easy sxs with your cuts.  Love you ladies, Mary 💎💙💚💎💙🙏

[[Ma...]]

Sweet D, my lovely twin, English, E, Free , all others and one hurting spy (((  wishing you all a beautiful day and I would be remiss if I didn't remind you all of what day it is  :D.. Yes that's right people it's TWO FOR TUESDAY RIDDLE DAY!! Sweet D's favorite day!! I'll be back later to deliver the fun! :laugh:

 

Love you all,

The riddler!

Trish xo

 

Ahhhhh, Two for Tuesday :

[[Ma...]]

Morning LHSG!  Up and at'em, here today, it is suppose to be just beautiful, all the wild flowers Texas is known for, are blooming everywhere because we had so much rain.  🌼💐🌷🌹🌷💐.  Love you all, Mary.......🐕🐾🐾🦉. Hooohooo 

[[4G...]]

Trishy and Mary. Thank you so much for your support. You are very special people. 💙💚💛💜  I've got my Mum and Rebecca coming over on Friday. I hope I feel better than this. 😵😵

 

Intend, great that you've got your microwave sorted. If only it was so easy with Cathy....

 

Hello and hope you have a good day Esp, Stut, NJ, Free and Cant.

 

Love and Hugs.  Gilly xxxxx 💕