The Long Hold Support Group

[[fr...]]

  Oh Intend, I am so sorry this has happened to your daughter.  How awful.  I will keep her and your family in prayer.  Never give up hope.  Drs aren’t always right , as you and I well know.  I pray it’s a wrong diagnosis. 

[[Ma...]]

Cut and hold. Bad? Don’t know how to do the other.E

 

Cut and hold was like torture to me, if I hadn't gone too fast in the beginning, I would have done really well on it, except for the muscles in my back.  Builder could explain it to your husband.  You should probably hold a while before you start, but then you go slowly and make sure each month, you recalculate your % from where you are.  If it's something you are interested in, I am sure between your husband, builder and my husband, we could get you going.  DLMT is easier on your system,imo, cut and hold was like a shock to my cns each time.  I hated it.

[[In...]]

It’s not the wrong Dx. She’s had sx of something for almost 3 years now. Her doctor (who’s at the university of Utah) has tested for this and that.

 

Poisoning of metals, arsenic, numerous things. But her doc just couldn’t quite catch it. And then last week she went to her clinic appt. and her right leg was ballooned along with her face, and she was in so much pain and could not breathe, that the doc called an ambulance. They took her right into NOT the ER, but a research room.

 

And a whole team of the research dept was waiting.

 

I am the one with idiopathic subglottic stenosis, and that is the best research hospital in the US. And that is where I was finally diagnosed.

 

 

[[In...]]

She is hysterical on the phone.

 

Dan is going to call her. Hope that works out. I do cut and hold myself.

 

It’s not the “cut pill with a pill cutter type of thing. “ Its draw up a certain amount through a syringe with no needle and discard. Then hold for a certain length of time until I feel some resolution of sx.

 

I’m forgetting to thank people for caring. I’m sorry about it. Hard to think here.

 

Dan just tried to call her. She must have turned that phone off.

[[es...]]

I am glad she is at a research center. That is where you want to be for the rare stuff. I did a little reading. It is autoimmune, right? What treatment are they starting? E

[[Ma...]]

It’s not the wrong Dx. She’s had sx of something for almost 3 years now. Her doctor (who’s at the university of Utah) has tested for this and that.

 

Poisoning of metals, arsenic, numerous things. But her doc just couldn’t quite catch it. And then last week she went to her clinic appt. and her right leg was ballooned along with her face, and she was in so much pain and could not breathe, that the doc called an ambulance. They took her right into NOT the ER, but a research room.

 

And a whole team of the research dept was waiting.

 

I am the one with idiopathic subglottic stenosis, and that is the best research hospital in the US. And that is where I was finally diagnosed.

 

Oh, that's so great of you to talk to your husband!!

[[In...]]

  Oh Intend, I am so sorry this has happened to your daughter.  How awful.  I will keep her and your family in prayer.  Never give up hope.  Drs aren’t always right , as you and I well know.  I pray it’s a wrong diagnosis.

 

Free, thank you. You are kind and caring of so many.

[[Ma...]]

Intend, I don't know what you do if she won't talk to you and Dan.  Will she communicate with Mary?

[[In...]]

Intend, I don’t know what to say. This is terrible. I am going to do some reading and ask my husband about the disease as I have never heard of it. Is this absolutely confirmed? Did she get a second opinion? You know, we are all here for you. Please pm me. Esperanza

 

esperanza,

 

I will contact you. I hadn’t heard of it either. But it turns out to be the worst form. I’ll be repeating myself as cant remember what I said to whom.

 

She can’t breathe, can’t see, bones and teeth are breaking.

[[In...]]

Intend, I don't know what you do if she won't talk to you and Dan.  Will she communicate with Mary?

 

Mary,

 

She and Mary have been at odds for years. I should text Mary, but I hesitate as she says Cathy is too dramatic. She’s actually right.

 

Actually, the whole bunch is dramatic. I’ll stereotype when I say this, but these Mexicans are some dramatic people.

 

Time to say “OH DIOS, SAN ANTONE!!!,”  Violas favorite phrase which always sounded like the place was burning down in front of us.

[[In...]]

It’s not the wrong Dx. She’s had sx of something for almost 3 years now. Her doctor (who’s at the university of Utah) has tested for this and that.

 

Poisoning of metals, arsenic, numerous things. But her doc just couldn’t quite catch it. And then last week she went to her clinic appt. and her right leg was ballooned along with her face, and she was in so much pain and could not breathe, that the doc called an ambulance. They took her right into NOT the ER, but a research room.

 

And a whole team of the research dept was waiting.

 

I am the one with idiopathic subglottic stenosis, and that is the best research hospital in the US. And that is where I was finally diagnosed.

 

Oh, that's so great of you to talk to your husband!!

 

You would think he wouldn’t have waited to call her after I told him. But he did. He used to be rather sensible. But had to have that coffee first, and go downstairs to watch price is right,  or the one where drew carey is on whatever that is.

[[St...]]

Hi intend so sorry to read this however if it is Behcets syndrome please do not lose hope it is horrible and painful but the good news is it is very rarely fatal.l know there is always a risk so hopefully when she gets the proper treatment things will improve.l am hoping it isn't as dire as it appears at this time.

  Love and hugs Stut X

[[In...]]

Hi intend so sorry to read this however if it is Behcets syndrome please do not lose hope it is horrible and painful but the good news is it is very rarely fatal.l know there is always a risk so hopefully when she gets the proper treatment things will improve.l am hoping it isn't as dire as it appears at this time.

  Love and hugs Stut X

 

Stut,

 

I think it is. I just read that most die within 10 years. I must research more. I’ve been on so many sites today. Too many. And Cathy turned off her phone so even Dan can’t talk to her. But he’s outside putting up fencing right now. So he’s ok. And I’m calmer than when I started. Much calmer.

 

Thank you Stut for caring.

[[Ma...]]

Hi intend so sorry to read this however if it is Behcets syndrome please do not lose hope it is horrible and painful but the good news is it is very rarely fatal.l know there is always a risk so hopefully when she gets the proper treatment things will improve.l am hoping it isn't as dire as it appears at this time.

  Love and hugs Stut X

 

Stut,

 

I think it is. I just read that most die within 10 years. I must research more. I’ve been on so many sites today. Too many. And Cathy turned off her phone so even Dan can’t talk to her. But he’s outside putting up fencing right now. So he’s ok. And I’m calmer than when I started. Much calmer.

 

Thank you Stut for caring.

 

We love you Intend, we are here for whatever help we can be, know that.  Mary 🌹🌹🌹🌹🌹🌹🌹

[[es...]]

Dan is in denial. A very male response. He is afraid, I am guessing. Read that what Stut says is true. It is rarely fatal. Mary should know. And she should know that it is very real and not a dramatization. And it is ok for Mary to know you need her, as well. You are a family. You cannot carry this alone. E

[[Ma...]]

Dan is in denial. A very male response. He is afraid, I am guessing. Read that what Stut says is true. It is rarely fatal. Mary should know. And she should know that it is very real and not a dramatization. And it is ok for Mary to know you need her, as well. You are a family. You cannot carry this alone. E

 

I so believe everything Esperanza just said Intend.  Time for Mary to step up, tell her you guys NEED her right now, her sister may be dying.  You can not do this alone.  And not only is Dan afraid, his heart is breaking, just like yours.  But Cathy has to be very afraid too, and her normal response is lashing out.  Try not to hear the meanness, hear the child that needs her family.    Love you, you know that!!

[[es...]]

I agree with Mary. Cathy is talking out of fear. She really doesn’t blame anyone. Underneath anger, there is usually fear. E

[[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

[[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 ❤️💕💙🙏🙏🙏🙏🌹🌹🌹🌹🌹

[[4G...]]

Hello All.  Intend, I'm so sorry to hear about your daughter. It may not be fatal, but of course it impacts on her life in many ways. I've never heard of this illness before but my Dad had MS and I know what it is like to be close to someone with a degenerative condition. My heartfelt sympathies to all of your family.  Gilly xxx 💟💟💟

[[4G...]]

Stut, thanks for your encouragement. I am okay at the moment and feel completely different. Don't know how long it will last, but I'll take it where I can!

 

I hope your sister improves. You are amazing helping her like you do when you don't feel great yourself.

 

Love and Hugs.  Gilly xxx 💟💟💟

[[4G...]]

Mary, Keep on keeping on. You are doing really well. Love and Hugs.  Gilly xxx 💟💟💟

[[Ma...]]

Mary, Keep on keeping on. You are doing really well. Love and Hugs.  Gilly xxx 💟💟💟

 

Love you too English, glad you are doing so well, love and pets to you and Tilly 💙🙏💎💙🙏💎.    🐱🐾🐾🐾🐾

[[4G...]]

Thanks, Mary. You're such a Sweetheart. Love to Sly.  Gilly xxx 💟💟💟

[[Tr...]]

Hi ladies I was away from the screen for awhile talking to my husband. It's nice to see everyone supporting one another.

I love this group and you all matter to me. Just felt like saying that..

Big hugs for all of you.. :hug: :hug: :hug: :hug: