The Long Hold Support Group

[[Tr...]]

Intend,

I'm not sure if you're still on, your light is on so just know we're all here for whatever you need from us. I'm sure you're trying to wrap your head around all that's going on. So if you need to just be with your thoughts for awhile, just know we're here for you.

 

Sending you tons of love and hugs,

Trish :smitten:

 

 

[[Ma...]]

I will be right back

[[In...]]

Hey intend, I just read all your posts and the responses. This is devastating news for sure and I'm heartbroken for you and your daughter. If I were you, when you talk to Cathy again, she may have turned off the phone so she can be alone with this, it's a lot to process to say the least, but when you speak with her again ask if you can speak to her Dr.  This is your daughter and no matter how old she is it doesn't change that fact and you need to hear directly what the Dr has to say. I'm sure receiving this diagnosis has sent her mind reeling it would probably be best if another person get all the facts from the Dr or the place that diagnosed this.

 

Stay strong, and I'm here for you as we all will be.

❤️ Trish

 

Trish,  we are talking about the University of Utah hospital here, a major research hospital.

 

It was the research team that diagnosed this, and there are so many areas of research that I wouldn’t know where to begin calling. And they wouldn’t talk to me anyway.

 

They had her for 4 days, and did many tests but there’s one definitive test. They put a needle under the skin and just barely into the muscle and then if blisters show up, it shows that the immune system is hyperactive to a small “injury.”

 

Esperanza is going to talk to her hubby and let me know what he has to say. But let’s remember that there are different areas of expertise.

[[Tr...]]

Hey intend, I just read all your posts and the responses. This is devastating news for sure and I'm heartbroken for you and your daughter. If I were you, when you talk to Cathy again, she may have turned off the phone so she can be alone with this, it's a lot to process to say the least, but when you speak with her again ask if you can speak to her Dr.  This is your daughter and no matter how old she is it doesn't change that fact and you need to hear directly what the Dr has to say. I'm sure receiving this diagnosis has sent her mind reeling it would probably be best if another person get all the facts from the Dr or the place that diagnosed this.

 

Stay strong, and I'm here for you as we all will be.

❤️ Trish

 

Trish,  we are talking about the University of Utah hospital here, a major research hospital.

 

It was the research team that diagnosed this, and there are so many areas of research that I wouldn’t know where to begin calling. And they wouldn’t talk to me anyway.

 

They had her for 4 days, and did many tests but there’s one definitive test. They put a needle under the skin and just barely into the muscle and then if blisters show up, it shows that the immune system is hyperactive to a small “injury.”

 

Esperanza is going to talk to her hubby and let me know what he has to say. But let’s remember that there are different areas of expertise.

Hi intend,

I meant maybe Cathy will let you speak to whomever gave her this diagnosis. I'm not doubting it, I just want you to have all the information and the what comes next or plan for Cathy's treatment. She's going to need all the support she can get and so are you and Dan. I'm glad Esp can be of some help to you, I can't imagine how your mind must be reeling.

 

Praying for you my dear friend 🙏🙏🙏

[[In...]]

Hey intend, I just read all your posts and the responses. This is devastating news for sure and I'm heartbroken for you and your daughter. If I were you, when you talk to Cathy again, she may have turned off the phone so she can be alone with this, it's a lot to process to say the least, but when you speak with her again ask if you can speak to her Dr.  This is your daughter and no matter how old she is it doesn't change that fact and you need to hear directly what the Dr has to say. I'm sure receiving this diagnosis has sent her mind reeling it would probably be best if another person get all the facts from the Dr or the place that diagnosed this.

 

Stay strong, and I'm here for you as we all will be.

❤️ Trish

.

 

That is a great idea, I hope she talks to you and allows Dr's to talk to you ❤️💕💙🙏🙏🙏🙏🌹🌹🌹🌹🌹

 

Cathy might allow that. She’s  quite upset and full of blame for us when there really is no blame to be placed.

 

Cathy has forgotten all the times we were right there for her which is so much, I can’t even begin to describe. I chased her from house to house and neighborhood to neighborhood trying to find her when she left sleep overs and always found her. I found her with polygamist kids and their friends. I once found her in a golf shack with a bunch of these kids.

 

Dan and I were up all night. I drove around looking while he waited at home for phone calls. I have been to numerous doctor appointments with her over this problem. There just was no definitive diagnosis until last week.

[[Ma...]]

Hey intend, I just read all your posts and the responses. This is devastating news for sure and I'm heartbroken for you and your daughter. If I were you, when you talk to Cathy again, she may have turned off the phone so she can be alone with this, it's a lot to process to say the least, but when you speak with her again ask if you can speak to her Dr.  This is your daughter and no matter how old she is it doesn't change that fact and you need to hear directly what the Dr has to say. I'm sure receiving this diagnosis has sent her mind reeling it would probably be best if another person get all the facts from the Dr or the place that diagnosed this.

 

Stay strong, and I'm here for you as we all will be.

❤️ Trish

.

 

That is a great idea, I hope she talks to you and allows Dr's to talk to you ❤️💕💙🙏🙏🙏🙏🌹🌹🌹🌹🌹

 

Cathy might allow that. She’s  quite upset and full of blame for us when there really is no blame to be placed.

 

Cathy has forgotten all the times we were right there for her which is so much, I can’t even begin to describe. I chased her from house to house and neighborhood to neighborhood trying to find her when she left sleep overs and always found her. I found her with polygamist kids and their friends. I once found her in a golf shack with a bunch of these kids.

 

Dan and I were up all night. I drove around looking while he waited at home for phone calls. I have been to numerous doctor appointments with her over this problem. There just was no definitive diagnosis until last week.

 

I am really hoping she comes around and lets you talk to the Dr's.  When you are scared as she must be, you don't hear all  the Dr says and you can't think to ask the right questions.  Letting her anger go and letting you help would be such a blessing, but don't let her beat up on you, no matter what.  You are going through way too much for that crap.  🌹🌹🌹🌹🌹🌹🌹

[[Tr...]]

Hey intend, I just read all your posts and the responses. This is devastating news for sure and I'm heartbroken for you and your daughter. If I were you, when you talk to Cathy again, she may have turned off the phone so she can be alone with this, it's a lot to process to say the least, but when you speak with her again ask if you can speak to her Dr.  This is your daughter and no matter how old she is it doesn't change that fact and you need to hear directly what the Dr has to say. I'm sure receiving this diagnosis has sent her mind reeling it would probably be best if another person get all the facts from the Dr or the place that diagnosed this.

 

Stay strong, and I'm here for you as we all will be.

❤️ Trish

.

 

That is a great idea, I hope she talks to you and allows Dr's to talk to you ❤️💕💙🙏🙏🙏🙏🌹🌹🌹🌹🌹

 

Cathy might allow that. She’s  quite upset and full of blame for us when there really is no blame to be placed.

 

Cathy has forgotten all the times we were right there for her which is so much, I can’t even begin to describe. I chased her from house to house and neighborhood to neighborhood trying to find her when she left sleep overs and always found her. I found her with polygamist kids and their friends. I once found her in a golf shack with a bunch of these kids.

 

Dan and I were up all night. I drove around looking while he waited at home for phone calls. I have been to numerous doctor appointments with her over this problem. There just was no definitive diagnosis until last week.

 

Intend,

O have no doubt you and Dan have been very good parents. I remember feeling very connected to you in that department. We both had at least one difficult adult child, for me it was my son. I think that Cathy is just trying to process this, I think Esp said it best " anger is fear" and that's very true. I've read and I've seen it first hand that that's true when my neice was diagnosed with terminal cancer. My sister was full of blame, anger and resentment. She looked right at me in her grief stricken state and said why my child why not yours, but I knew it was her grief talking and forgave her quickly for that, long before she'd even asked to be forgiven. So we can't even begin to know what's going through your daughters mind at the time, anger may be there only emotion that she can feel at the moment and to be honest I think it would be mine too if I were in this position.

 

Give her a little bit of time I guarantee she'll come around..

 

:smitten:

[[NJ...]]

Intend,

 

I happened to pop in and see what is going on with your daughter. As you know, my son has been ill for months and it has been an utterly heartbreaking and difficult time for us, so I have some sense of what you are going through. No matter how old our children are, we want them to be well and be able to live long, healthy, happy lives, and when things veer off that track, it is devastating. I know in my situation I am grieving for the life I wanted my son to have which now seems out of reach, and I am sure you feel that way about your daughter, that she is being robbed of the future she deserved to have.

 

I will keep you in my thoughts and prayers. Please take good care of yourself.

[[In...]]

Esperanza just contacted me and said her hubby did some reading and that’s it hard to get a firm Dx for this as it seems to be dermatologic when it’s really not.

 

Also said it’s often remitting and often treated with steroids. I’m not explaining this all correctly, but I mentioned that definitive test where the blisters show up showing over activity of the immune system.

 

And I also mentioned that with Cathy this has been  unremitting over these last 3 years; she’s just gotten steadily worse and worse. And neurological impairment is common also so perhaps her extreme anger with us is coming from that.

 

Her breathing trouble and eye problems make it more serious. I just can’t imagine where this came from as we have no Asians or Turkish people in either of our families.

 

I never in my wildest dreams thought I might be taking care of Cathy at this time of my life.

 

When she calms down, we will try to talk again. I should have texted Mary who’s flying back here today. She must be at the airport in Sacramento by now. I think Blake knows. She mentioned him in her email and phone call.

 

Unfortunately, Cathy has put those kids through so much, that they don’t like to talk to her.

 

And she is supposedly moving to Texas. I’m pretty mixed up here about what is happening, but you guys are all great and very, very supportive, so a big THANK YOU for everything!

 

[[Tr...]]

Intend,

I have work in the morning so I'm going to bed but you know you can always pm me. Stay close to us , there is strength in numbers my dear friend so lean on us if you need too ❤️

 

LHSG may be our name but support is our game and we are here for you. :smitten:

 

Love you,

Trish ❤️

[[4G...]]

NJ, How is your son? xxx

[[Ma...]]

Intend,

I have work in the morning so I'm going to bed but you know you can always pm me. Stay close to us , there is strength in numbers my dear friend so lean on us if you need too ❤️

 

LHSG may be our name but support is our game and we are here for you. :smitten:

 

Love you,

Trish ❤️

 

That's our new motto  . We love u........🌹🌹🌹🌹🌹🌹

[[4G...]]

Sleep tight, Trishy. xxx

[[In...]]

Intend,

 

I happened to pop in and see what is going on with your daughter. As you know, my son has been ill for months and it has been an utterly heartbreaking and difficult time for us, so I have some sense of what you are going through. No matter how old our children are, we want them to be well and be able to live long, healthy, happy lives, and when things veer off that track, it is devastating. I know in my situation I am grieving for the life I wanted my son to have which now seems out of reach, and I am sure you feel that way about your daughter, that she is being robbed of the future she deserved to have.

 

I will keep you in my thoughts and prayers. Please take good care of yourself.

 

NJ,

 

Thank you. We wanted the best for both of our kids as you do. This whole thing has been a real curveball.

 

Cathy has been a big partier most of her life, but when this started, she tamed right down. Still smokes, but the drinking went out the window. She is exhausted most of the time now, and is so sick. I remember  last summer when she came, she was so thin that the clothes just hung on her. And her hands were all contracted like in dupuytrens contracture. She told me she’s gained weight, but all this other stuff like the blisters and ballooning of her legs are back.

 

She just can’t focus right now. We must call her later if that phone is back on. I’ll ask Dan to try. My voice is not good and he’s very calm right now. Watching “building off the grid” type shows.

 

He’s gonna try right now.

[[In...]]

Hit the hay all you fantastic people!

 

We can talk in the morning. 💙💚💛🧡❤️💜

[[Ma...]]

Good might LHSG, hoping with all my heart you and Dan are able to get some rest.  Love everyone so much and so proud to be in this group.  The first thing Esperanza said, we must circle the wagons around Intend and Trishy said " LHSG might be our name, but support is our game....how wonderful to have these women in our group.  We love you Intend, Mary  🌹🌹🌹🐱🐾🐾🐾🛠⚒🛠

[[In...]]

Our wagons are circled and I am supported.

 

Thanks you LHSG!

[[Ma...]]

Our wagons are circled and I am supported.

 

Thanks you LHSG!

 

:smitten:

[[es...]]

You are indeed, Intend. We will check in tomorrow. E

[[In...]]

You are indeed, Intend. We will check in tomorrow. E

 

There may not be much tomorrow. Dan just tried to call again. Phone is off. I may have have to wend my way to west valley tomorrow. But an email to her may help.

[[St...]]

Morning Free what use are we if you and others hide their suffering we may as well not be here.Please never be afraid to share how you feel.l am not comfortable with sharing how l feel and personally that's how l cope however if you want to talk talk my love.Sometimes it helps to let it out and where else can we do that.Never ever be afraid to say how you are.That goes out to Esperanza and twiny as well.

Love to you all.

  Love and hugs Stut X

[[St...]]

Morning Lady Mary me fussing l think you have the wrong person 😀. Anyhoo l will be on when l can this taking care of someone is harder than it sounds 😀.Her hubby is doing a lot of decorating and enjoying his freedom which was the goal in all this.

  I hope you are doing ok my love and not rushing your cuts.Again amazing job here my love.

  Love you my lady Mary.

  Love and hugs Stut X

[[St...]]

Good morning lntend l hope you are able to get more answers today.l know your daughter is lashing out so try to let it run off you she is just scared as you and Dan are.l assume you will be going to be with her and perhaps you will be able to get more information face to face. I am thinking about you and be very careful what you read on the internet.l know there are some good uk sites.

Sending you my love.

Love and hugs Stut X

[[fr...]]

  I just get tired of complaining Stut.  Love to you.  ❤️💕💋💕

[[St...]]

Free l know that feeling well however we are here for you my love and we are not much of a support group if you feel you can't talk about how you are.You talk away and l for one will never get tired listening.

Love to you my lovely friend.

  Love and hugs Stut X