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Main Forums => Living With HIV => Topic started by: Christine on May 31, 2007, 04:00:32 pm

Title: Update: Doctor reccomended hospice yesterday
Post by: Christine on May 31, 2007, 04:00:32 pm
I don't know what more to say right now. My hands are shaking and it is hard to type. I just wanted to let you all know things are not going well. I have decisions that need to be made.

i thought death would be different. More decisive, peaceful. But I find that it is not for me. The numbers, the lab results say one thing, my body screams enough, but my heart does not want to leave.

I don't know what to do. I am so tired of being sick, I've lost almost 20lbs in the past few months. A few months ago the doctor talked to me about doing things I have always wanted to do...do it now, don't wait. I wanted to see Disney World. I know it is silly, but I wanted to be a little girl again, and not be sick, and feel like magic and dreams are real. My husband made it happen. It was wonderful. I wasn't sick that week.

But it has gotten worse since then, more bad than good days. I didn't know if I should tell all of you. I don't want anyone to worry or be fearful.

I don't know what is the right thing to do. I just want it go away.

Christine

June 1, 07
Hi Everyone,
You are all so amazing, I can't really put it into words. I can feel, in my heart, your thoughts and the power of those thoughts. It is extraordinary. I am so blessed to have known all of you, experienced your joys and laughter. I am a better person for all of you.

I had the amazing joy of talking to our Miss Melia today on the phone. She is wonderful, kind, empowered, funny...Hearing her voice, and talking to her has helped me gain more insight into the past few days.

I am not ready to give up. My heart is not ready. My body may fail me, and I imagine that is what will happen, but I am not going to go gentle into the good night. I might be in denial about what will happen over the next few months, and maybe that is a way of coping right now, and I think for now that is okay.

I called the doctor, and told them I am still going to take my hiv meds, and for now use pain meds as needed at home. When hospice starts, I want, at least for now, to remain at home.

What my body does, it does, but hiv is not taking my heart or my spirit. It is going to have to fight me for those, and it better be prepared, because I can be a real bitch when I want to be.

Melia, thank you again. You were my angel today.

Christine
Title: Re: Doctor reccomended hospice yesterday
Post by: Dachshund on May 31, 2007, 04:06:37 pm
I'm just so sorry Christine. I'm glad you told us...I'm just so sorry.

Hal
Title: Re: Doctor reccomended hospice yesterday
Post by: Carolann on May 31, 2007, 04:07:01 pm
Christine,

My heart goes out to you.  I am so sorry that you are going through this pain.  My thoughts are with you.

Carol
Title: Re: Doctor reccomended hospice yesterday
Post by: chemistry001 on May 31, 2007, 04:17:37 pm
Christine

You are in my thoughts right now, I'm glad you are able to share what is happening in your life at this what must seem an impossible phase. I hope you are able to take some comfort in the messages from people on here.
God bless you

Paul xXx
Title: Re: Doctor reccomended hospice yesterday
Post by: frenchpat on May 31, 2007, 04:31:40 pm
Christine,

your post does not make me worried or afraid, it makes me think. Thank you for sharing this.
There is a lot of you in my thoughts right now.

Pat
Title: Re: Doctor reccomended hospice yesterday
Post by: scud44 on May 31, 2007, 04:37:09 pm
Christine, Words cannot express my feelings at this moment - I know this must be a hard time for you - please keep smiling and remember the good times in your life - they are the important times
Title: Re: Doctor reccomended hospice yesterday
Post by: Matty the Damned on May 31, 2007, 04:45:31 pm
Ah Christine,

Matty the Damned won't lie to you, this news saddens him deeply. He wants you to know he loves you dearly and hopes that you find the peace you want and deserve.

MtD
Title: Re: Doctor reccomended hospice yesterday
Post by: asaint on May 31, 2007, 05:03:00 pm
Hi Christine,   I'm not one to cry but I must admit my eyes are welling up. I wish I could do or say something that would make all of this disappear for you. but unfortunately all I can do is say a pray and hope things will get better for you.
Bob
Title: Re: Doctor reccomended hospice yesterday
Post by: Nadine on May 31, 2007, 05:21:32 pm
Christine,

I'm finding it really hard to come up with the words that I really want to say.  Just know that you are in my thoughts and prayers always.

((((((((((HUGS)))))))))))
Nadine
Title: Re: Doctor reccomended hospice yesterday
Post by: anniebc on May 31, 2007, 05:24:17 pm
Dearest Christine

I hate this so much, I hate the suffering this brings you, I hate the fact that you are put in a position where decisions like this have to be made..and I hate the fact I don't know what to say, my tears are your tears...I can only repeat what Matty has said, I wish you peace. love and an end to your suffering.

In love and sadness
Jan :'(
Title: Re: Doctor reccomended hospice yesterday
Post by: cmhjeff on May 31, 2007, 05:28:33 pm
Christine - This was painful to read only because it took me to a place I was 2 years ago. Only difference is that I wanted a hospice care facility to die but my doctor refused. I remember one minute praying for my angel to take me from all this and the next praying to stay cause I wasn't ready. Don't fight your feelings and allow yourself to be angry or cry but hold on to hope cause hope is the best medicine out there.

I'll be thinking about you and sending positive energy your way!

Hugs
Jeff
Title: Re: Doctor reccomended hospice yesterday
Post by: blondbeauty on May 31, 2007, 05:37:37 pm
Dear Christine,
It is very hard for me to accept there is no way of making you get better. I still remember the good results you achieved with one of the new meds for a short time.
I might be silly or childish but I can´t accept nothing can be done. I heve been reading these days in a coference held here in Valencia even the most resistant starins of HIV will be controlled with already available meds. Hold on. I want you to post a picture of your next birthday.  :-* :-* :-*
Title: Re: Doctor reccomended hospice yesterday
Post by: sweetasmeli on May 31, 2007, 05:40:23 pm
Dear sweet Christine

My heart goes out to you and Chris. You are both in my thoughts. I've sent you a pm.

Melia xxx
Title: Re: Doctor reccomended hospice yesterday
Post by: blondbeauty on May 31, 2007, 05:45:23 pm
http://www.diariomedico.com/edicion/diario_medico/especialidades/infecciosasxsida/es/desarrollo/997111.html
Tranlation:
Infecciosas/Sida Inhibiting New publicity of the protease indicated for the simplification of the therapy During the course of day VIH, the surrounded virus that continues resisting, celebrated in Valencia, has appeared to darunavir, TMC114, an inhibitor of the protease commercialized by the Jansen-Cilag laboratory under the name of Prezista that presents/displays a good hepático profile, which makes of him a safe option for the treatment of the VIH in patients as much become infected as not become infected. Juan White Carlos. Valencia 23/05/2007 Traditionally one of the negative aspects has been the resistance of the immunological system to the combination of these drugs, is this Brown Santiago, of the Hospital Ramon and Cajal, whereas to darunavir it can be combined with any other commercialized antirretroviral and the three new ones: etravirina, retrovirol and to raltegravir ". Prezista has been the first antiviral agent of the protease in receiving the approval accelerated and conditional (with IIb phase) in ten years. In this sense, Jose Mª Gatell, the Clinical Hospital of Barcelona, has assured that "to darunavir it is an inhibitor of the powerful protease, tolerated well, with high genetic barrier and very few resistance crossed to other drugs of his same group". One of the objectives of Jansen-Cilag is to facilitate the universal access to forward edge of treatment; for it it has signed a licensing agreement of collaboration with Reel to register and to distribute Prezista without payment of rights of property in the sub-Sahara countries. Vaccines On the other hand, an equipment formed by members of the Hospital Dog Ruti and the Clinical one of Barcelona, under the name of Hivacat, is working in a therapeutic vaccine that uses analogous dendítricas cells of the own patient. The results of this study, commanded by Teresa Gallart, will be presented/displayed in a year. BLOCKADE OF ARN VIRAL the group of the university professor Luis Carrasco, of the Center of Biologi'a Molecular Severo Ochoa (UAM-CSIC), publishes number of Journal in the last of Virology a study in which it is explained that the structure of the messenger ARN (ARNm) does not confer traducibilidad when the intracellular surroundings have been modified by the viral infection. Thus, when virales ARN in cells already infected were introduced additionally saw that these were incapable to produce proteins in spite of having the same structure that those that then was being translated, derived from the viral replication.
http://actualidad.terra.es/sociedad/articulo/expertos_vih_destacan_nuevos_farmacos_1582261.htm
Transalation:
Experts emphasize new drugs will allow to control resistant strains. VIH Specialist in the treatment against AIDS emphasized today that ' soon will appear new drugs against this disease, of which the past year 1,586 cases in Spain were diagnosed, that will allow ' to control the virus well, even the more resistant starins'. The present evolution of the antirretroviral treatment in the last 25 years, alternatives and of future, the present coinfection of VIH and Hepatitis C and perspective of the affected ones, were some of the subjects treated in meeting ' VIH, the surrounded virus that still resists", in Valencia, in which they participated expert and representing in affected. The commander of the Unit of Infectious Diseases of the General Hospital of Valencia, Enrique Ortega, declared to EFE that while before the VIH ' was a synonymous one of death and development of AIDS the new treatments ' have made it a cronich disease. ' But sometimes they appear resistant strains to these drugs, by many factors like the capacity of the virus, the absorption deficit or the carelessness in the taking of the treatment, as it happens in other diseases cronich', indicated. Ortega indicated that they are appearing new drugs with which those resistance will be able to be surpassed. ' We have drugs for the old morning calls of the virus and new medicines for new morning calls of the virus, and in the next years we are going to even control well the virus in the stocks resistentes', affirmed. One of these drugs is to darunavir, that reduces of significant form the presence of the virus of human immunodeficiency (VIH) in the AIDS patients which they do not respond to the conventional treatments. On the other hand, doctor Brown Santiago, of the Hospital Ramon and Cajal of Madrid, indicated that great part of the problems related to the indirect effect of the first antirretrovirales treatments, the development of resistance and the lack of fulfillment pro the difficulty that they had in his taking ' has seen superados' clearly. ' At the moment less than the ten percent of the patients submissive treatment they present/display virológico failure, that is to say, viral load detectablé, indicated Colored person, who emphasized the ' excellent profile of power and toleranciá of darunavir that, according to he said, ' allows to even treat the patients who fail or do not respond to others terapias'. Ortega emphasized that more than half of the patients with VIH also it is affected of Hepatitis C, and in them it progresses more quickly to hepática cirrhosis that in the general population, which supposes that the chronic hepático failure is one of the first causes of death in the affected ones by VIH. In the meeting also Jose Fuster, ex- president of CESIDA, State Coordinator of the VIH-SIDA participated to Maria, that emphasized that the advance that has taken place in the treatment of the disease ' it hits a social scene frontally where it continues being a hostile atmosphere that makes difficult the design of a project of life for afectados'. To improve the prevention strategies, to diminish the still high number of delayed diagnoses in the VIH, to imply to the Social Security in the boarding of certain associated indirect effect to the antirretroviral treatment, specially the one of lipodistrofia, is some of the aspects that still the patients demand. In opinion of Fuster, the estigmatización and attitudes discriminatorias that still occurs in the labor scope, as well as the necessity to regulate with justice the qualifications of minusvalía, is some subjects that ' still must be mejorados'.
Title: Re: Doctor reccomended hospice yesterday
Post by: Christine on May 31, 2007, 06:21:34 pm
Thank you everyone. I would be lost without all of you.

Juan-thank you for the info on the study. i am on prezista, and an integrase inhibitor. it worked for about 2 months, then the vl started going up again. I seem to have a very nasty resistant strain. I have some pictures from Disney i will post. I promised Melia and Catman I would send them some too.

Jeff, Jan, Nadine, Bob- Thank you.

Matty- Don't be sad. I need you to make me laugh, and smile.

Scud44, Pat, Paul, Carol- Thank you also for your kind words.

Hal- I am sad to. I foolishly thought I was prepared for all this.

i love all of you too.
Christine
Title: Re: Doctor reccomended hospice yesterday
Post by: Iggy on May 31, 2007, 06:24:39 pm
Christine,

I'm just sitting here praying for the right words....and then I realize that's a wasted prayer cause it's not about words right now.  God I don't know what to say ....I just hate this so much...so very much.

I just wish there was something I could do. 
Title: Re: Doctor reccomended hospice yesterday
Post by: Mouse on May 31, 2007, 06:46:59 pm
Everyone has already said everything I'd like to. I just want you to know I'm thinking about you and if you ever feel like talking or anything I'm always around.

And al;skfjldkj Disney! I used to watch the vacation videos about Disney when I was little, it was so pathetic. I want to see pictures too. Just not any of Goofy because he scares me. :[ I don't know why.
Title: Re: Doctor reccomended hospice yesterday
Post by: gemini20 on May 31, 2007, 07:19:21 pm
Dear Christine,

This must have been a very hard thread to start and I hope you will gain some strength and support from everyone's thoughts and comments.

I cannot fully appreciate the position you find yourself in but I have given plenty of thought to ‘end of life’ issues over the years. I don't think there is any ‘right thing’ to do in this situation but perhaps you can find something that feels most comfortable for you.

If the bad days are outweighing the good and your ‘body screams enough’ then would you consider stopping all the meds and allowing whatever time you have left to be on your terms?

I know that for me it will always be the quality of my life which is the overriding factor in any decision I have to make. When the simple pleasures of life are taken away and all you have is sickness and pain I know I would find it very hard to struggle on. And yet human instinct probably doesn't allow oneself to just ‘let go’ and let nature runs its course.

It was good to read that you fulfilled one of your dreams, maybe there are others still to be had which is why your heart does not want to leave just yet.

I hope you find the strength and guidance you need to make your decisions.  My thoughts and prayers are with you and your family.

Emma
Title: Re: Doctor reccomended hospice yesterday
Post by: AlanBama on May 31, 2007, 07:26:30 pm
My dear Christine,

I am so sorry.   I'm so thankful you went on your trip to Disneyworld!  I just want to say that I love you, I wish you peace, and never give up hope.  You are always in my prayers.

Alan   :'(
Title: Re: Doctor reccomended hospice yesterday
Post by: Cliff on May 31, 2007, 07:54:36 pm
Christine,

I'm sorry for these turn of events.  I wish you strength and peace with whatever decision you make. 
Title: Re: Doctor reccomended hospice yesterday
Post by: carousel on May 31, 2007, 08:38:24 pm
Christine

I can only imagine what you going through. 

Knowing that there are so many who are willing you the very best must be a comfort.

Having a bit of professional care at this time can't be bad.

Best wishes, Charles xx
Title: Re: Doctor reccomended hospice yesterday
Post by: Life on May 31, 2007, 08:41:18 pm
I wana hear about Disney World!!  I think the next step we all eventually will take will be like Walt's dream.   But,  I do not think we nor I or especially you Christine should rush to this....  It is going to come... It is going to come when we either allow it, or IT just says - now is the time...  Christine,  some of us are selfish and would hate to feel and deal with you not being amongst us...  That is enough sometimes to find a way to make it another day.   However,  when there are no options, no roads that have not been traveled, then I think it is ok to say goodbye.   I do not like goodbye's and I do not believe in them... Cuz for me,  we will all be in a better place, together without the virus.   Christine,  I like Juan hope that your doctors can make you better if not well.   The power of prayer sometimes is all I know...  You have mine.....  

I can't wait to see your pictures,  that is a place I have never seen...

Love,

Eric
Title: Re: Doctor reccomended hospice yesterday
Post by: RapidRod on May 31, 2007, 08:51:24 pm
Christine, my thoughts are with you.
Title: Re: Doctor reccomended hospice yesterday
Post by: Teresa on May 31, 2007, 09:18:05 pm
Dear Christine,

It breaks my heart to read that you are suffering. You have helped me so much since I first came to these forums. I wish there was something I could do or say to take away your pain. I hate that this is happening to you!

You and your family are in my thoughts and prayers.

Much Love
Teresa
Title: Re: Doctor reccomended hospice yesterday
Post by: BT65 on May 31, 2007, 09:54:17 pm
Christine:
   I do not know you, but I feel you.  This made my eyes well up BIG TIME.  Please know another woman cares about what happens to you.  I wish you the peace you need and the comfort you deserve.
Betty :'( :-* :'(
Title: Re: Doctor reccomended hospice yesterday
Post by: xtente on May 31, 2007, 09:58:24 pm
I have been positive for 8 years and I didnt think people died of HIV anymore. How long have you been positive.

I will pray for you

please write back

Even when there seems like there is no hope left...there is hope
Title: Re: Doctor reccomended hospice yesterday
Post by: Denver Toad on May 31, 2007, 10:07:51 pm
Christine, we don't know each other but I'm touched and blessed by your post. No matter where the road leads, I hope you find peace. I don't have deep words, I'm overwhelmed and touched that you shared with us where you are in this journey called life. Follow your heart, be all you dare with what you have. My prayers, my tears, my heart goes out to you... Todd
Title: Re: Doctor reccomended hospice yesterday
Post by: Miss Philicia on May 31, 2007, 10:12:45 pm
Christine, I'm so saddened to read this but wish only for the pain to be lessened.  I've always followed your medical postings and know of you particularly virulent strain even with all of the latest, best treatments you've tried.  I can only imagine what you have personally been through.  My thoughts go out to you and your husband.
Title: Re: Doctor reccomended hospice yesterday
Post by: appleboy on May 31, 2007, 10:33:08 pm
Christine,
I am thinking of you!  I pray you find the peace you are looking for.  Please do post the pics of Disney as I have never been and love looking at other pics from going there.  I am sending you a huge hug through the world wide web.
 :-*
AppleBoy
Title: Re: Doctor reccomended hospice yesterday
Post by: joyluckclub on May 31, 2007, 10:55:44 pm
Christine,

My thoughts are with you.
Title: Re: Doctor reccomended hospice yesterday
Post by: Blixer on May 31, 2007, 11:58:18 pm
Christine,
I echo what others have said here.  My thoughts are with you.  There are lots of people here to help provide some emotional support.  Reach out when you need to.
Title: Re: Doctor reccomended hospice yesterday
Post by: Queen Tokelove on June 01, 2007, 12:04:35 am
Christine~~

Damn, I really hate that things have come to this. Know that you are in my thoughts and prayers. Looking forward to seeing the pics from Disney....*eyes wells with tears*
Title: Re: Doctor reccomended hospice yesterday
Post by: aztecan on June 01, 2007, 12:58:44 am
Christine,

My heart is heavy after reading what is happening. I hope you find the peace you seek and know you will be in my thoughts and heart.

With love,

HUGS,

Mark
Title: Re: Doctor reccomended hospice yesterday
Post by: SASA39 on June 01, 2007, 02:40:32 am
Christine , do no what to say............
First time Atlantis and now this........
One of my wishes is/was to take my little girls to an Euro Disney in Paris.
I`m not sure anymore that i could do that.........
But I`m glad for you ,yes  sometimes a person is eager to went back to his childhood, ....................and I glad that you have managed to do that.
God bless you , I really love you as a person :-*
                                            Al
And I`m really proud to share this salt of earth with you.........

Title: Re: Doctor reccomended hospice yesterday
Post by: Dragonette on June 01, 2007, 03:54:54 am
 Dear Christine,

Your post saddened and touched me deeply.

I am crying for you & I pray that you find peace.

Love,
Title: Re: Doctor reccomended hospice yesterday
Post by: JohnOso on June 01, 2007, 05:27:42 am
Christine,

As sad as I am in reading your words, I am glad that you were able to find some measure of happiness with your trip.

I am keeping you in my thoughts.

John
Title: Re: Doctor reccomended hospice yesterday
Post by: Dachshund on June 01, 2007, 07:13:30 am
Christine,

Another day, another chance to say we love you.

Hal
Title: Re: Doctor reccomended hospice yesterday
Post by: Peter6836 on June 01, 2007, 07:18:46 am
Christine,
My heart is with you, God Bless You. I will think of you and send you Love.
Peter
Title: Re: Doctor reccomended hospice yesterday
Post by: RAB on June 01, 2007, 08:15:42 am
Christine

I can not add anything beyond what others have already posted.

I am truly sorry for what you are facing.

RAB
Title: Re: Doctor reccomended hospice yesterday
Post by: bear60 on June 01, 2007, 08:53:26 am
My thoughts are with you, Christine.
Title: Re: Doctor reccomended hospice yesterday
Post by: milker on June 01, 2007, 09:04:14 am
Dear Christine,

I am too very sorry to hear those news. My thoughts are with you.  :-* :-*

Milker.
Title: Re: Doctor reccomended hospice yesterday
Post by: Trixie on June 01, 2007, 09:05:15 am
Dear Christine:

I will carry you in my heart.... HUGS and good thoughts.

May you find peace.

Trixie
Title: Re: Doctor reccomended hospice yesterday
Post by: dad1216 on June 01, 2007, 10:18:44 am
Dear Christine,

My thoughts are with you...

Bob

Title: Re: Doctor reccomended hospice yesterday
Post by: tnboy on June 01, 2007, 10:48:32 am

 Dearest Christine,

       I want to join the others in saying I am very saddened by this news. I wish you the best medical care possible and lots of Love.

 You are in my Thoughts and Prayers,
 Mike
Title: Re: Doctor reccomended hospice yesterday
Post by: JPinLA on June 01, 2007, 10:50:40 am
Christine -

We do not know eachother but from this post and others you are a brave and strong woman and I hope you find comfort and peace soon and that you are surrounded by love.

Sending my own love -

Jason
Title: Re: Doctor reccomended hospice yesterday
Post by: blondbeauty on June 01, 2007, 12:13:59 pm
I have been thinking of you last night. You "just" need a 3 new drug combination and not a single new drug. I am sure your Dr. will find the way to make you healthy again. I trust science and research has something for you. This year several new meds will become available. Prezista has worked for a while but there are many more.
Like in Disney´s Magic Kingdom I believe happy days will return to your life.  :-* :-* :-*
Title: Re: Doctor reccomended hospice yesterday
Post by: Bucko on June 01, 2007, 01:53:47 pm
Christine-

I am humbled by your grace and honored to have met you.

Love,
Brent
Title: Re: Doctor reccomended hospice yesterday
Post by: dixieman on June 01, 2007, 02:03:58 pm
Christine, I am at a lost for words.... thinking of you... John
Title: Re: Doctor reccomended hospice yesterday
Post by: StrongGuy on June 01, 2007, 02:44:23 pm
My heartfelt thoughts are with you and, know, we are all in debt to you for your journey as a fighter against this disease.

Title: Re: Doctor reccomended hospice yesterday
Post by: englishgirl on June 01, 2007, 03:47:52 pm
i dont know what to add, i can only echo the words of all the others who have posted their love and best wishes here. sending you strong thoughts.
please keep us updated
with love xxxx
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: sweetasmeli on June 01, 2007, 05:14:13 pm
June 1, 07
Hi Everyone,
You are all so amazing, I can't really put it into words. I can feel, in my heart, your thoughts and the power of those thoughts. It is extraordinary. I am so blessed to have known all of you, experienced your joys and laughter. I am a better person for all of you.

I had the amazing joy of talking to our Miss Melia today on the phone. She is wonderful, kind, empowered, funny...Hearing her voice, and talking to her has helped me gain more insight into the past few days.

I am not ready to give up. My heart is not ready. My body may fail me, and I imagine that is what will happen, but I am not going to go gentle into the good night. I might be in denial about what will happen over the next few months, and maybe that is a way of coping right now, and I think for now that is okay.

I called the doctor, and told them I am still going to take my hiv meds, and for now use pain meds as needed at home. When hospice starts, I want, at least for now, to remain at home.

What my body does, it does, but hiv is not taking my heart or my spirit. It is going to have to fight me for those, and it better be prepared, because I can be a real bitch when I want to be.

Melia, thank you again. You were my angel today.

Christine

I've quoted all of your update so that no-one misses it in your edited original post.

Dear Christine

No need for thanks. You lifted my heart today too. You are a sweet, extraordinary and courageous lady.
It was an honour chatting with you...and boy did we chat! :D

Looking forward to our next one...meanwhile, give some more thought to that 'goal' you mentioned. ;)

Love & hugs
Melia xxx
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Dachshund on June 01, 2007, 05:21:49 pm
Christine your spirit and light shine brightly for all of us to see...you make us better people just because we know you. It's hard to keep a good woman down as the old saying goes...and everyday you prove it.

Hal
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: anniebc on June 01, 2007, 06:17:28 pm
Quote
What my body does, it does, but hiv is not taking my heart or my spirit. It is going to have to fight me for those, and it better be prepared, because I can be a real bitch when I want to be.

And they say we are the weaker sex.. :D..your update cheered me up no end, thank you for keeping us informed, you know you have many supporters here, and everyone is sending you their thoughts and prayers...so many hands to hold on to.

(((hugs)))
Jan :-*
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: kentb on June 01, 2007, 10:19:27 pm
Christine, warm thoughts and wishes coming your way from Atlanta, Ga.  A very special prayer and place in my heart for you just now,

Kent
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Basquo on June 01, 2007, 11:12:27 pm
I try to be an uptight S.O.B. during the daylight, but I read this post this morning at my work desk and I went numb for the rest of the day. I even had a meeting, then had to text-page a doctor with "u need2get ur ass in here & work on ur charts," because she's such a pup she has to be texted like a kid, but I was numb against the sadness I felt.

I understand that you might have felt ready, but if your heart is telling you to hang on, I am joyous for that!  

Trek on, Baby, and keep telling us what's going on.

Quote
And they say we are the weaker sex..

Jan's words ring true, but I think weaker sex is when you only have the energy to say "F--- you," instead of pushing them off of you.

Be a duck. Let the water "roll off" of you.

I admire your courage to state what you are feeling, and even more for being a duck. You are an inspiration, Christine!

Love, and Best,
Creighton
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Lis on June 01, 2007, 11:36:43 pm
find peace sweet spirit... love has you in her wings....
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Jeffreyj on June 02, 2007, 04:39:04 am
Like Creighton said, Dear Christine, You are an inspiration to so many of us here. When I was first diagnosed in '84 I was told I was gonna die. My shrink and I were talking. I asked her how long I had to live.

"Jeff ole buddy" she paused and looked me square in the eyes. "Expect to live forever." Those words were comforting me ever since. I hope it helps you my dear.

You are respected and loved by many in here. You are awesome.

Loads of love to you sweet lady!
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Ann on June 02, 2007, 06:46:37 am
((((((Christine))))))

Thinking of you...

Ann
xxx
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: heartforyou on June 02, 2007, 07:24:34 am
Dearest Christine,

First of all, know that you are loved here by every single soul.
I hope you can let us form a circle of love and light in which you can feel safe to go.
Think of it as a bright lifting energetic cloud that will embrace you, enlighten you and help you transit, when you are ready.
We are all connected, much more then we can possibly know with our limited knowledge.

Souls, spirits, hearts and above all energies never die. They only let go of their earthen shape, our body.

May you find the peace and the strength to make your transit in serenity.

We will all follow sooner or later and be reunited, free of HIV.

Sending my brightest, most healing, humble energy

In love

Herman

I have already asked my lover JP to be there for you.
May your transit be smooth and gentle. On your terms and in your time frame.
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Jena on June 02, 2007, 09:23:31 am
Christine
 Please know you are in my thoughts and my prayers. Remember one thing Honey, God never gives us more than he knows we can handle...
Love
Jena
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: PositivelyYours on June 02, 2007, 07:03:48 pm
Hello Christine,

May the comfort of our Lord and Savior Jesus Christ give you comfort through these difficult times. Just know - All of us feel your pain and sorrow.  I just want you to remember this. "The grass withered; The flower fadeth, but the word of our God - Shall stand forever!"  Just pray precious and I know God does answer prayers!!!  We love you and I WANT YOU TO FIGHT UNTIL THE BITTER END!!!


I don't know what more to say right now. My hands are shaking and it is hard to type. I just wanted to let you all know things are not going well. I have decisions that need to be made.

i thought death would be different. More decisive, peaceful. But I find that it is not for me. The numbers, the lab results say one thing, my body screams enough, but my heart does not want to leave.

I don't know what to do. I am so tired of being sick, I've lost almost 20lbs in the past few months. A few months ago the doctor talked to me about doing things I have always wanted to do...do it now, don't wait. I wanted to see Disney World. I know it is silly, but I wanted to be a little girl again, and not be sick, and feel like magic and dreams are real. My husband made it happen. It was wonderful. I wasn't sick that week.

But it has gotten worse since then, more bad than good days. I didn't know if I should tell all of you. I don't want anyone to worry or be fearful.

I don't know what is the right thing to do. I just want it go away.

Christine

June 1, 07
Hi Everyone,
You are all so amazing, I can't really put it into words. I can feel, in my heart, your thoughts and the power of those thoughts. It is extraordinary. I am so blessed to have known all of you, experienced your joys and laughter. I am a better person for all of you.

I had the amazing joy of talking to our Miss Melia today on the phone. She is wonderful, kind, empowered, funny...Hearing her voice, and talking to her has helped me gain more insight into the past few days.

I am not ready to give up. My heart is not ready. My body may fail me, and I imagine that is what will happen, but I am not going to go gentle into the good night. I might be in denial about what will happen over the next few months, and maybe that is a way of coping right now, and I think for now that is okay.

I called the doctor, and told them I am still going to take my hiv meds, and for now use pain meds as needed at home. When hospice starts, I want, at least for now, to remain at home.

What my body does, it does, but hiv is not taking my heart or my spirit. It is going to have to fight me for those, and it better be prepared, because I can be a real bitch when I want to be.

Melia, thank you again. You were my angel today.

Christine
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Grinch on June 02, 2007, 08:18:48 pm
This saddens me greatly.  Peace to you and I hope for a chance to meet you on the other side.
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: J220 on June 02, 2007, 11:34:44 pm
I really don't know what to say, so I'll stick to what I usually talk about around here- clinical trials. I don't know in what city you are, but perhaps you may want to contact any of the locations handling Virionyx's PEHRG214 trial. There are 5 locations, Los Angeles, Miami, Dallas, Iowa City, and New York City. Check: http://clinicaltrials.gov/ct/show/NCT00385567?order=1 , and http://www.virionyx.co.nz/internal.aspx?mode=15&mast=mast7.jpg . I believe they had a compassionate release in the past which worked very well, hence their present trials. J. All my best to you, and hoping fervently to hear better news from you! J.

p.s. the following just came out on 6/1/07. I don't know if you are already taking any of the medications mentioned in the article, but I just wanted to share this info with you. Hope it helps!: http://www.sciencedaily.com/releases/2007/05/070531191057.htm
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: northernguy on June 03, 2007, 12:15:52 pm
Christine, words kind of fail me at times like this, but I'm thinking of you.
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: penguin on June 03, 2007, 03:06:58 pm
Christine, I'm sorry to hear things are so tough.

Most people, they think hospice/palliative care, they think last bus stop.

Me, I think of another team of health professionals, ace at managing complicated bundles of chronic symptoms - like fatigue, nausea, pain etc - & providing support for the emotional challenges that accompany, in whatever setting works best for you.

The fat lady, she ain't singing, throat's playing her up. When clouds seem heaviest, plan more trips to Disneyland. Or Sea World. Or wherever the most smiles are  :)

Kate x
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: DanielMark on June 03, 2007, 04:14:43 pm
Hi Christine,

We haven’t had contact before so please forgive my clumsy words.

I am saddened to learn about this stage of your life, but you're not gone yet and I am delighted to read that you will refuse to let HIV take your spirit. When I was diagnosed and the doctor told me to go home and prepare to die, for some reason I felt determined at that moment that no matter what I had to face ahead that HIV would never take my spirit. That’s our essence, and it’s untouchable.

I believe that not all power can be seen, and so I pray that you will experience all those “Disney” moments and more for as long as your body lets you.

Strength and love (if I may) to you Christine,

Daniel
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: James1941 on June 03, 2007, 05:17:43 pm

I am not ready to give up.

Then, don't bloody well give up, keep fighting - and talk to me tomorrow, please.

James
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: SoSadTooBad on June 03, 2007, 06:19:06 pm
Christine - may your heart live forever in those who love you, may your spirit fight until your last breath, may your soul find peace until we meet again. 

Sending you love and prayers of healing and support. 
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: J.R.E. on June 03, 2007, 07:55:57 pm
Dear Christine,

Sending lots of love and thoughts, and positive energy, your way.....



Ray
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Carolann on June 03, 2007, 08:01:13 pm
Christine,

Your update made me feel better. You are in my thoughts.  I am glad you have decided to keep fighting. Many healing hugs your way.

Love,

Carolann
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: IzPoz on June 03, 2007, 08:05:54 pm
Christine,

I'm afraid that my voice will be lost within this sea of loving people, but I wanted you to know that my thoughts are going out to you, and your family. Coming to this stage in your life must be difficult, yet so fulfilling. Know that your loved ones will always have you in your heart as they are in yours.

My thoughts, my prayers, go out to you.

Be well, and be at peace.
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Queen Tokelove on June 03, 2007, 11:24:54 pm
Christine~~

I'm glad to see you still have fight left in you. Keep it up! I was hoping you'd be feeling better and you seem like you are even if it's just a wee bit. I'm also glad that talking with Melia helped and thanks her for posting your reply because I did not see it. I will continue to pump out my lil rays of sunshine just for you! ;)
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: tsw923 on June 04, 2007, 12:16:49 am
Christine,

I have been out of touch on the forum for awhile.  I am so sorry to hear how things are going.  But I am happy to hear that you are still fighting!  I will keep you in my prayers and send my extra energy your way!

Ty
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Lisa on June 04, 2007, 03:13:24 pm
My heart is with you Christine. Never let'em see you sweat!
I wish you grace and peace in the next part of your journey.
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: catwoman on June 04, 2007, 10:47:45 pm
I am praying for you.
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: WorriedWife on June 04, 2007, 11:02:06 pm
You are in my prayers christene!!!

Stacy
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: cjc on June 05, 2007, 05:58:39 am
Hello, I do not know what to say that hasn't already been said but I will keep you in my thoughts and hope things improve for you.  Cristy
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: kentb on June 08, 2007, 10:46:43 am
Hello Christine, it's Kent here.  I've been praying for you every day and often throughout the day.  If you have the strength and courage please let me/us know how you are doing.

warmest thoughts,

kent
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: Ulong on June 08, 2007, 12:00:11 pm
Just adding my voice to all the others here....Thinking of you, and wishing you the best.
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: newbernswiss on June 08, 2007, 02:10:24 pm
Christine,
Your courage, bravery and spirit are admired by all of us as you take on another of lifes challenges. Remember you are never alone. Be it family, friends, neighbors, emails from your POZ community forums pals, we are here to support you. For now rest, reflect and keep in touch with us.
As Always,
Clintoon
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: david25luvit on June 12, 2007, 08:29:07 pm
Christine...

                 I was there when David went on hospice and the one thing for sure I learned from that experience was that giving up is not an option...
Once David gave up and God help me I saw it in his eyes.....I knew it was only a matter of time.  The power of positive thinking is now required.  Do
what you must to settle your affairs (I've done that already myself) but keep your courage and fight it sweetie.  Even if you don't feel like eating....
EAT.....even if you're tired and want to stay in bed....GET OUT OF BED AND MOVE if you physically able.  CONCENTRATE ON THE POSITIVE
and leave the negative for others to ponder.  Give it all you have and then some.....   And when the time comes and you'll know when it does...
Embrace it as you would a lover.  That's my advice...  You're in my prayers sweetheart :-*
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: RICKY77531 on June 12, 2007, 08:49:02 pm
I pray to god that you get better......Godbless
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: ds4146 on June 12, 2007, 10:00:02 pm
All I have to say is my thoughts are with!
Title: Re: Update: Doctor reccomended hospice yesterday
Post by: BKNYLivin on June 13, 2007, 02:51:38 pm
Don't know you, but I've read a lot of your posts and you seem like an amazing person. My thoughts and prayers are with you and your family!