The Long Hold Support Group

[[Tr...]]

Hey Mary, English, E, Free and all you other wonderful ladies,

Hope you all have a great Saturday, my day is packed with stuff to do so I'll probably check in later in the day or most likely evening to see how you all are. I love and care about all of you, hope you have the best day possible.

Love to all,

Trish ❤️

[[Ma...]]

Hey Mary, English, E, Free and all you other wonderful ladies,

Hope you all have a great Saturday, my day is packed with stuff to do so I'll probably check in later in the day or most likely evening to see how you all are. I love and care about all of you, hope you have the best day possible.

Love to all,

Trish ❤️

 

You too girlfriend, go have a good time, not sure I could bounce    to your granddaughter, love you!  Mary 💝💘💖💕💞❣️🎈🎈🎈🎈🎈🎈🎈

[[es...]]

Intend, I hope you slept a bit last night. I know from experience that Trishy is right about not getting any answers on the weekend. What Stut said to you is perhaps something to consider. You are an expert on Cathy’s psychological history. Her providers should be talking to you. That is the best way to help her, so I hope they do. Is it possible that Cathy has, because of her state of mind, concluded on her own that she was given only a year to live. Even with cancer, I think it is no longer standard of care to make these kind of statements to patients. Also, if a patient is terminal, it seems they would be talking to her about hospice care or some other medically appropriate plans for when she is released. They certainly would have asked for next of kin information. This is a very strange disease, from what little I can understand about it. Why would her doctors be giving up? There are so many things here that just don’t seem to make sense, at least to me. I guess I am hoping that you will find out that even though she does have Bechets, that she is not terminal. I hope what she has told you is coming from her own confusion. You said she had eye and lung involvement. I talked to Tom. He is not an expert on this at all, but in reading the literature, he did say that blindness could be a risk. But, since she is already being treated, it is likely they have acted in time. Lung inflammation responds well to steroids. That, at least, was my experience because I have DRESS syndrome. He was unable to find any reference to the bones. I hope Monday will bring some real answers. And some real hope for you. I am holding you in my heart, E

[[4G...]]

Hello All. Just doing my popping in thing.

 

Rebecca was supposed to come today. I am still suffering a bit from w/d symptoms but didn't want to put her off. Anyway, she rang me and said she could come on  Friday instead. So I will look forward to that.

 

I was stupid. Bearing in mind that I'm still recovering from w/d symptoms, I went to the chemist's on my own. Agoraphobia City. Really bad. Could hardly wait to get to the door. The chemist's is my nemesis because I've been there so many times when I felt crap. It could well be the last place I can go to as I recover. So many horrible memories. Anyway, we'll see how it goes. I'm not depressed like I used to be when I went out. Now I think I will get over my agoraphobia but I'm just not up to that point yet.

 

Love and Hugs to Everyone.  Gilly xxx 💟💟💟

[[es...]]

Good going, Gilly. That is a positive move. E

[[Ma...]]

Hello All. Just doing my popping in thing.

 

Rebecca was supposed to come today. I am still suffering a bit from w/d symptoms but didn't want to put her off. Anyway, she rang me and said she could come on  Friday instead. So I will look forward to that.

 

I was stupid. Bearing in mind that I'm still recovering from w/d symptoms, I went to the chemist's on my own. Agoraphobia City. Really bad. Could hardly wait to get to the door. The chemist's is my nemesis because I've been there so many times when I felt crap. It could well be the last place I can go to as I recover. So many horrible memories. Anyway, we'll see how it goes. I'm not depressed like I used to be when I went out. Now I think I will get over my agoraphobia but I'm just not up to that point yet.

 

Love and Hugs to Everyone.  Gilly xxx 💟💟💟

 

You are doing better, we can all hear it loud and clear in your posts

[[4G...]]

Thank you, my lovely friends. You are so supportive. Hope you are as well as you can be.

Love and Hugs. Gilly xxx 💟💟💟

[[Ma...]]

Everyone, today is a special day, it is our wonderful free's birthday 🎈🎈🎈🎈🎈🎈🎁🎁🎁🎁🎁🎁🎁🎂🎂🎂🎂🎂

[[In...]]

Mary has called me in the middle of my read here and my researching.

 

I want to reply in full here, but must wait till off the phone.

 

Mary IS NOT my “boss.”

 

She is, however, here in town and moving for a “trial of the relationship” to Sacramento very soon.

[[St...]]

Everyone, today is a special day, it is our wonderful free's birthday 🎈🎈🎈🎈🎈🎈🎁🎁🎁🎁🎁🎁🎁🎂🎂🎂🎂🎂

  Nipping in here to wish my lovely friend Free a happy birthday.Love to you my rock chick.😍🎂🍾🍻

  There is a parade on it's way couldn't get it cancelled so enjoy my love 💌😀.

.. love and hugs Stut X

[[4G...]]

Free,  :happybday:   Love and Hugs.  Gilly xxx 💟💟💟

[[es...]]

Happy Birthday, Free. Hope it is a good day, my friend. Esperanza

[[In...]]

Happy birthday, Free!

 

 

:happybday:

[[fr...]]

  Thank you all so much , love to you all. ❤️💕❤️💕

[[Ma...]]

Intend, how did the call with Mary go and more importantly, the research?

Love ya, Mary :smitten:

[[In...]]

Intend, how did the call with Mary go and more importantly, the research?

Love ya, Mary :smitten:

 

Mary,

 

The call with Mary went well. She’s pretty much consumed with Brad at the moment. He’s a big skier, and went skying yesterday, and today has taken his daughter for birthday presents as this is her 23rd birthday. Tomorrow, he flies back to Sacramento, but will return in April again. Mary has decided to drive back with him taking her clothes, shoes, and her cats. They will live in that “gorgeous house” that they have already stayed in.

 

Brad is a very good organizer, so although there’s not lots of furniture yet, the house is pretty much set up with the fridge, stove, microwave, washer and dryer. And Mary will move her furniture there after this 3 month trial of their relationship that I spoke of earlier. She gets a lot of mixed messages from him, and constantly worries that he is sincere about stopping his bachelor type ways, but then worries that when he’s comfortable with the relationship, he will go back to that behavior. They did buy a big sectional for the downstairs “great room.”

 

I researched all over google earlier today, and Behcets syndrome has numerous manifestations from the somewhat benign to the more serious.

 

Cathy does have signs of being in the “more serious” category. When she has described herself in those antagonistic emails, she says she’s having trouble breathing. And she mentioned that while in  the hospital at the U of U hospital, she told this research team “please tell me that I’ll be able to see again!” She said she was told that she would. 

 

 

And yesterday talking with me, she said “ you know mom, I think I have some kind of brain involvement  here, because I get mixed up a lot and confused.”  Of course, that conversation went south because she lost her temper with me because I didn’t want to be tested myself for this syndrome.

 

I guess by now it’s kind of a continuous repeating of this tale of woe. But she does have these classic sx. They also include the bright red skin with the swelling and blisters that I have seen on numerous occasions.

 

And then i read a study that said it takes about 3 years from the onset of sx to a full Dx. That does fit the timeline with Cathy to a tee.

 

I don’t know a thing about it being fatal or having a year to live or if these doctors even said that.

 

The facts are that Cathy is highly volatile and antagonistic towards us and her own children.

 

She has no idea that I called the west ridge clinic yesterday. I just though her GP should know what’s going on. And then that South Jordan clinic called. They wanted to know if I wanted to make an appointment for Cathy.

 

Cathy is an adult. She’s 43 years old, and she would be shocked to know all this. There is no way I could make an appointment  FOR her; she has to make that appointment for herself or her research team and/or GP should follow through. It appears to me that my job is to call the west ridge clinic and find out when Dr. Wagma is available to speak with although I found out yesterday that they carefully “protect these doctors” from anyone who is not authorized to speak with them, and we are not authorized as they so informed me yesterday.

 

I’m fairly sure it’s Russ and Quin who are the ones who are authorized now. I have not received any emails from her today, but those last two yesterday were very unfriendly. She said “I hate both of you and when I die, either Russ or Quin will notify you,” and then that followed by “I hate you so much that no one will notify you.”

 

The bone and teeth breaking problem is probably related to her lack of minerals as she often won’t eat either because of she is drinking alcohol or she has gastrointestinal distress which is also part of this syndrome.

[[Th...]]

Hi group, dropping in after a long time just for an update. I started a liquid taper and for some odd reason I’ve not experienced huge side effects. I really don’t understand it with how sensitive I’ve been in the past. The only change in Serequel 50mg to handle insomnia. I’m sleeping 😴 12 hours but my symptoms are staying much more manageable than before. I’m doing a symptom based taper with holds as needed but I haven’t needed them. My PMS is also a fraction of what it was. This was messing me up 10 days a month. Hope I’m not cursed posting this and suddenly hit a wave 🌊

[[Ma...]]

Intend, how did the call with Mary go and more importantly, the research?

Love ya, Mary :smitten:

 

Mary,

 

The call with Mary went well. She’s pretty much consumed with Brad at the moment. He’s a big skier, and went skying yesterday, and today has taken his daughter for birthday presents as this is her 23rd birthday. Tomorrow, he flies back to Sacramento, but will return in April again. Mary has decided to drive back with him taking her clothes, shoes, and her cats. They will live in that “gorgeous house” that they have already stayed in.

 

Brad is a very good organizer, so although there’s not lots of furniture yet, the house is pretty much set up with the fridge, stove, microwave, washer and dryer. And Mary will move her furniture there after this 3 month trial of their relationship that I spoke of earlier. She gets a lot of mixed messages from him, and constantly worries that he is sincere about stopping his bachelor type ways, but then worries that when he’s comfortable with the relationship, he will go back to that behavior. They did buy a big sectional for the downstairs “great room.”

 

I researched all over google earlier today, and Behcets syndrome has numerous manifestations from the somewhat benign to the more serious.

 

Cathy does have signs of being in the “more serious” category. When she has described herself in those antagonistic emails, she says she’s having trouble breathing. And she mentioned that while in  the hospital at the U of U hospital, she told this research team “please tell me that I’ll be able to see again!” She said she was told that she would. 

 

 

And yesterday talking with me, she said “ you know mom, I think I have some kind of brain involvement  here, because I get mixed up a lot and confused.”  Of course, that conversation went south because she lost her temper with me because I didn’t want to be tested myself for this syndrome.

 

I guess by now it’s kind of a continuous repeating of this tale of woe. But she does have these classic sx. They also include the bright red skin with the swelling and blisters that I have seen on numerous occasions.

 

And then i read a study that said it takes about 3 years from the onset of sx to a full Dx. That does fit the timeline with Cathy to a tee.

 

I don’t know a thing about it being fatal or having a year to live or if these doctors even said that.

 

The facts are that Cathy is highly volatile and antagonistic towards us and her own children.

 

She has no idea that I called the west ridge clinic yesterday. I just though her GP should know what’s going on. And then that South Jordan clinic called. They wanted to know if I wanted to make an appointment for Cathy.

 

Cathy is an adult. She’s 43 years old, and she would be shocked to know all this. There is no way I could make an appointment  FOR her; she has to make that appointment for herself or her research team and/or GP should follow through. It appears to me that my job is to call the west ridge clinic and find out when Dr. Wagma is available to speak with although I found out yesterday that they carefully “protect these doctors” from anyone who is not authorized to speak with them, and we are not authorized as they so informed me yesterday.

 

I’m fairly sure it’s Russ and Quin who are the ones who are authorized now. I have not received any emails from her today, but those last two yesterday were very unfriendly. She said “I hate both of you and when I die, either Russ or Quin will notify you,” and then that followed by “I hate you so much that no one will notify you.”

 

The bone and teeth breaking problem is probably related to her lack of minerals as she often won’t eat either because of she is drinking alcohol or she has gastrointestinal distress which is also part of this syndrome.

[/quot

 

Wow Intend, what a disaster.  I am so sorry you are having to go through  this, and really your whole family.  You and Dan are the most important people here, remember that.  I do wonder how she got this disease.  I wish those Dr 's could talk to you, but I understand why they can't and no, you can't make an appointment, she would never go

I wish Mary luck, but she will never really trust him and that's going to make for a hard road.  Hope the kitties will be happy  . You are one strong lady, how you are doing this is mind boggling.  Love you, Dan , and Pepper, who gets pets and kisses 🐈🐾🐾🐾🐾🐾.  🌹🌹🌹🌹🌹🌹⚒⚙️🔨⛓🛠⛏

[[Ma...]]

Hi group, dropping in after a long time just for an update. I started a liquid taper and for some odd reason I’ve not experienced huge side effects. I really don’t understand it with how sensitive I’ve been in the past. The only change in Serequel 50mg to handle insomnia. I’m sleeping 😴 12 hours but my symptoms are staying much more manageable than before. I’m doing a symptom based taper with holds as needed but I haven’t needed them. My PMS is also a fraction of what it was. This was messing me up 10 days a month. Hope I’m not cursed posting this and suddenly hit a wave 🌊

 

Congratulations TTA, sounds like you have a plan and that plan is working well for you!!  Keep us posted, lots of luck 🍀🍀🍀.  Mary

[[In...]]

Third,

 

You are not cursed by posting this. I get superstitious myself and often knock on wood when I do thinks like this myself.

 

It’s so great that this third time of trying to get off these drugs you are not only succeeding, but you are getting less sx than before and feeling a lot better.

 

What a wonderful update. And now you’re almost off. You really need to celebrate when you’re off which should be soon.

 

No waves 🌊 🌊 for you. If anyone feels better after getting off hits a wave, be assured they will get windows also and will feel normal. Its not a linear process, but a window/wave pattern shows recovery is happening.

[[Ma...]]

Third,

 

You are not cursed by posting this. I get superstitious myself and often knock on wood when I do thinks like this myself.

 

It’s so great that this third time of trying to get off these drugs you are not only succeeding, but you are getting less sx than before and feeling a lot better.

 

What a wonderful update. And now you’re almost off. You really need to celebrate when you’re off which should be soon.

 

No waves 🌊 🌊 for you. If anyone feels better after getting off hits a wave, be assured they will get windows also and will feel normal. Its not a linear process, but a window/wave pattern shows recovery is happening.

 

I knock on wood too Intend  :laugh:

[[In...]]

Third,

 

You are not cursed by posting this. I get superstitious myself and often knock on wood when I do thinks like this myself.

 

It’s so great that this third time of trying to get off these drugs you are not only succeeding, but you are getting less sx than before and feeling a lot better.

 

What a wonderful update. And now you’re almost off. You really need to celebrate when you’re off which should be soon.

 

No waves 🌊 🌊 for you. If anyone feels better after getting off hits a wave, be assured they will get windows also and will feel normal. Its not a linear process, but a window/wave pattern shows recovery is happening.

 

I knock on wood too Intend  :laugh:

 

Mary and Third,

 

I knock on wood when I speak and when I post here. Time to knock on the table next to me. I did it for all of us.👍🤙👍 My word, my thumb looks way better than that thumb. ✅✅✅

[[Ma...]]

Third,

 

You are not cursed by posting this. I get superstitious myself and often knock on wood when I do thinks like this myself.

 

It’s so great that this third time of trying to get off these drugs you are not only succeeding, but you are getting less sx than before and feeling a lot better.

 

What a wonderful update. And now you’re almost off. You really need to celebrate when you’re off which should be soon.

 

No waves 🌊 🌊 for you. If anyone feels better after getting off hits a wave, be assured they will get windows also and will feel normal. Its not a linear process, but a window/wave pattern shows recovery is happening.

 

I knock on wood too Intend  :laugh:

 

Mary and Third,

 

I knock on wood when I speak and when I post here. Time to knock on the table next to me. I did it for all of us.👍🤙👍 My word, my thumb looks way better than that thumb. ✅✅✅

 

:laugh: 

[[In...]]

My plans for today changed somewhat.

 

Time to go to grocery stores. It’s hard cooking for Dan. He’s learned a lot about cooking himself, but I’ve had to let him watch me. He has a small repertoire now.

 

But I’m the one who cooks beans. I’ve been babysitting these all day. And now they’re off for now with no extra ingredients in them, but the “worst” is done thank goodness.

 

Tomorrow is definitely movie day. I finally have some good choices-Wedding guest with Dev Patel or Us by Jordan Peele of Get Out! fame. Possibly Gloria Bell also with Julianne Moore.

 

Poor little Pepper is finally on my lap purring. Why she waits so long is beyond me. Now I have to get up and jump in the dreaded shower. That water tightens my throat or I would not fear it.

 

🐈 🐱 🚿 🚿 and a black cat emoji that does not exist. 🌹 🥀 🌹 ☘️ ☘️ ☘️

[[Ma...]]

My plans for today changed somewhat.

 

Time to go to grocery stores. It’s hard cooking for Dan. He’s learned a lot about cooking himself, but I’ve had to let him watch me. He has a small repertoire now.

 

But I’m the one who cooks beans. I’ve been babysitting these all day. And now they’re off for now with no extra ingredients in them, but the “worst” is done thank goodness.

 

Tomorrow is definitely movie day. I finally have some good choices-Wedding guest with Dev Patel or Us by Jordan Peele of Get Out! fame. Possibly Gloria Bell also with Julianne Moore.

 

Poor little Pepper is finally on my lap purring. Why she waits so long is beyond me. Now I have to get up and jump in the dreaded shower. That water tightens my throat or I would not fear it.

 

🐈 🐱 🚿 🚿 and a black cat emoji that does not exist. 🌹 🥀 🌹 ☘️ ☘️ ☘️

 

Sly is mostly black, so we need a black cat and dog emoji