Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol
Read Now: TheBodyPRO.com Covers AIDS 2014

HIV Life >> Gay Men

Pages: 1 | 2 | (show all)
CarlThomas
Member

Reged: 12/12/04
Posts: 12
Loc: Orlando, Florida
Help and support
      #124557 - 12/12/04 01:38 PM

I am 30, and I have been positive for over 6 years. My partner will be 27 on the 19th of December and has has AIDS for the past 3 years. I am his primary care giver, and it gets harder for me every day. I have no one to talk to about this. On top of his health failing, and medications not working, my father has leukemia and a serious heart condition. I'm looking for mental and emotional support. I never give up hope, but the day to day is starting to wear on me. Any words of encouragement or wisdom will be appreciated. I started dating my partner over a year ago, and was well aware of his health status. I came into this relationship with my eyes wide open and do not regret a single day of it. Thank you for your time.

Carl

Post Extras: Remind Me!   Notify Moderator  
Jessie
Guardian

Reged: 06/15/04
Posts: 395
Re: Help and support new
      #124684 - 12/13/04 12:46 AM

Hey Carl,

You are a good person...a really Great person...It takes someone really special to go through what you do each day...you must love him very much...I am sorry for the pain you are going through..I do know what the pain is like and the worry, fear and sadness...Not knowing who to turn to when you need some support to keep going each day or just simply to cry, scream and vent...

You are strong in the first place to even be doing what you are doing and it sounds as if you are doing a GREAT job!!!!

To love unconditionally like that without fear must be such a great thing...Enjoy the good days you both have together and on the bad days try to enjoy them doing simple silly things together...these things you will both remember and will be special for you both...There are plenty of people here on the board that will give you support...you have come to the right place....hang in there...you are doing great and keep loving..thats what life is really all about....You have earned your wings my friend and have found out the true meaning of what life and love is all about...In that way, you ARE very lucky!!! Best of luck...God bless..I am here if you need me and so are others...we are here....~Jessie~

HIV+ since 2-3-04
"While there is breath, there is hope".

Post Extras: Remind Me!   Notify Moderator  
CarlThomas
Member

Reged: 12/12/04
Posts: 12
Loc: Orlando, Florida
Re: Help and support new
      #124685 - 12/13/04 01:13 AM

Thank you so much. Chris, my partner has been running a fever of 102.3 for the second time today. I finally got it to break again and he is resting now. I hope he has a good night. I was able to speak with my father today as well, the doctor says he needs a pace maker implanted by the new year. He is optimistic about it. Hopefully my mind will be at ease tonight enough to get some rest. Just knowing that there are others out there who know what I'm going through, and whose thougths and prayers are with me makes it easier. Everyday I share with Chris is a blessing, and I cherish it. Thank you for taking the time to let me know that there are others out there, ans that they are listening. Time for my sustiva now, and the peace that the night brings.

Post Extras: Remind Me!   Notify Moderator  
Jessie
Guardian

Reged: 06/15/04
Posts: 395
Re: Help and support new
      #124719 - 12/13/04 12:19 PM

You are very welcome Carl...my thoughts and prayers are with you and Chris...I also hope your dad has success with having the pacemaker put in...Usually that is not big deal and once it is in place, the person feels so much better.

I do have one question though Carl and that is have you taken Chris to the doctor of called the doc to let him know that Chris is feeling so ill? If so, what has the doctor said? If not, maybe you should?????

I am glad that you now there are people here who care...I will keep praying for you and Chris and please also know that I do agree with you when it comes to having each day with Chris as a blessing...You are a good person and Chris is very very lucky to have you in his life!!!!! Get some rest yourself my friend....~Jessie~

HIV+ since 2-3-04
"While there is breath, there is hope".

Post Extras: Remind Me!   Notify Moderator  
CarlThomas
Member

Reged: 12/12/04
Posts: 12
Loc: Orlando, Florida
Re: Help and support new
      #124728 - 12/13/04 02:52 PM

Yes I've spoken with the doctor. He said for Chris to start taking his Zithromax again and to try to get his fever to break. This happens so much, I know exactly what to do to bring the fever down. After the 4th trip to the emergency room, the attending physician told me exactly what they do for him and said to try it at home. Today we went to the ear nose and throat doctor, to try to find the cause of a cough that Chris has had for over a year now. It seems to be what triggers the fever, and fatigue. Only to be told it's probably acid reflux, or allergies. Chris has been treated for both in the past. We have seen 3 doctors for it, and no one has done tests to see what is causing the constant runny nose, which drains and causes the cough. I truly feel it's mold or fungus in his sinsus. I simply can't believe that they won't test for it, just as a precaution. Chirs has a cd4 count of 4 on a good day, and a viral load of 7,000. The doctors keep telling us that all of his problems will go away when his cd4 count rises. It's been less than 10 for over 3 years. Sorry for venting, but getting help from doctors is becoming harder and harder. They just don't seem to listen. He is resting now, and hasn't run a fever since last night. Hopefully, he will have some sort of appetite when he wakes up. He hasn't consumed much in the past week. On a lighter note, my father called, they are putting in the pace maker in the morning. He is not worried at all, and tells me not to worry either. I'll be making the hour long trip to my parent's home tonight, to do the bookkeeping for my father's business, and to try and comfort my mother. Then it's back to work tomorrow. I commute and hour and a half one way to work... so it's going to be a long week. Again thank you so much for your thoughts and prayers, you have no idea how much they are helping.

Carl

Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Help and support
      #124731 - 12/13/04 04:28 PM

hi Carl
My name is Stef. I am sorry to hear about your partner. I myself have been poz 5 yrs and doing okay but losing some ground lately, i need meds. I don't understand is he resistant to everything. I have met several poz ppl who are doing very well on treatment for over 10 yrs now. Isn't there anything he can take to get his counts up. Just a little worried that he's not getting enough medical care, where do you live. Why did he get sick in the first place and how long has he been poz?

Post Extras: Remind Me!   Notify Moderator  
CarlThomas
Member

Reged: 12/12/04
Posts: 12
Loc: Orlando, Florida
Re: Help and support
      #124734 - 12/13/04 06:14 PM

Hi Steph,
Chris has been positive for over 7 years now. He is originally from Colorado. He now lives in Florida. When he first moved to FL he had some questionable care, the health department in Orlando isn't that great a place. Ever since then he has been trying to regain the ground he lost. He was put on disability just over 2 years ago. Medicaid, which provides healthcare to the indigent here in FL isn't that great either. It's only since I've been fighting for him that we have seen any improvement. He has a great doctor, but the doctors here have too many patients. I'm lucky, I have insurance so I have a great specialist. Chris has a resistance to almost everything they have tried. We have him signed up for some drug trials. So we are keeping our fingers crossed. The hardest part is he is emotionally drained. He's tired of being sick, of having the chills and body aches all the time. He's tired of being tired. The worst part for me his seeing him cry, and having him tell me that he doesn't want to die. I do all I can to keep him comfortable, and as healthy as possible, but I'm only one person. We are trying to get into the doctor tomorrow, just so they know what going on. At this point, there isn't much more that they can do. He's already taking 1000mg of Zithromax a day.

I've been poz myslelf for 7 years, and I've been on the same medicines for 7 years as well. I'm glad I started meds early. I'm sure that you and your doctors will find a combination that works well for you. The important thing to remember is that starting meds is not a set back of any sort. It's just the best way at this point for you to take the best possible care of yourself. Take care and much love.

Carl

Post Extras: Remind Me!   Notify Moderator  
Jessie
Guardian

Reged: 06/15/04
Posts: 395
Re: Help and support
      #126070 - 12/14/04 07:26 AM

Oh Carl,

I do feel for you...I know how hard it must be for you to watch Chris cry and to listen to him talking about dying and being tired of being tired...I really do understand...I am sorry that you and Chris are going through this at all! I frequently visit in florida because my husbands family is from Ft. Laur...I do know that the medical care s not the best there BUT I am glad to hear that you have a good specialist...Are you and Chris both seeing an infect...disease doctor?

His counts are very low and I realize that he is resistant to many of the meds..have they tried different combo's in each of the drug classes? If so, have they made ANY difference at all? I feel so badly and wish there was something else I could do but pray for you and Chris...I am glad however, that his fever has broken and I will be hoping that he is strong enough to eat and drink to regain some strength...he must be so physically tired.....I have a friend that has aids and she drinks boost because she cannot eat and is wasting...I was wondering if Chris was drinking anything similiar to that to help with his weight and to give him alittle extra strength and nutrition?????

I read your post saying that you have him signed up for trial studies on meds...when will that start-how soon? do you know? I am keeping open lines here with you cause I want to help...just dont know how? I am sorry for all you are going through? Chris too!!!!!! Your dad will be fine having the pacemaker put in...nice that you are staying with your mom...who takes care of you my friend? Please take care of yourself Carl and know that I am thinking of you both everyday...hoping they find something to help Chris-shoot up his t-cells....Love ~Jessie~


Post Extras: Remind Me!   Notify Moderator  
PozInFl
Member

Reged: 06/29/04
Posts: 12
Loc: Northeastern FL
Re: Help and support
      #126075 - 12/14/04 09:47 AM

Hi Carl,

My name is Gary and I live in Jacksonville...I can understand your situation, and it's great you are reaching out. I know great, wonderful people in Orlando, that would be a be glad to provide a support system for you as well. My door and arms are open as well...please email me directly at pozinfl@yahoo.com....
BIG HUG
Gary

Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Help and support
      #126136 - 12/14/04 06:43 PM

Carl

I want you to know that I have walked a similar path. My partner was diagnosed with KS in 1995. At that same time I tested positive. I became his primary care giver for the next 6 years of his life. Thankfully he met the challenge head on. I hope for you that you find time for yourself. That is how I approached things -- but not just as a caregiver, also as someone who has HIV. One thing that caregivers fail to do -- is take care of themselves. Always try to find time to step away (wherever or whatever that may be) -- all of life worries (health, work, family - George Bush) will be there when you come back. I hope that you partner has more good days than bad. I see you appreciate and love him and I'm sure he knows it as well. All my very best to you and him.

Post Extras: Remind Me!   Notify Moderator  
Mark Anton
Unregistered

Re: Help and support
      #126138 - 12/14/04 07:28 PM

Carl..............
I am 45 and lost my partner quite a while ago. It is hard, look for the good things no matter how small, take one moment at a time.times are rough without an illness make sure you take time for yourself also and don't forget to go out on dates with your partner and making your health issues your life, things may be rough but don't let them consume you, take to to sit back and take a deeeeeep breath......good luck..........if theres anything I can do..........let me know

Post Extras: Remind Me!   Notify Moderator  
CarlThomas
Member

Reged: 12/12/04
Posts: 12
Loc: Orlando, Florida
Re: Help and support
      #126140 - 12/14/04 07:51 PM

I do try to make some time for myself. It's not easy though. I really don't have anyone else to stay with him. I have to go into the office tomorrow and I'm dreading it. Hopefully I can get his sister to watch over him for a little while. Just to make sure that his fever doesn't spike. He's resting now, so I'm taking some time for myself. Hopefully when he wakes up he'll be hungry... fingers crossed!

Post Extras: Remind Me!   Notify Moderator  
CarlThomas
Member

Reged: 12/12/04
Posts: 12
Loc: Orlando, Florida
Re: Help and support
      #126141 - 12/14/04 07:53 PM

Thank you for your words of kindness and wisdom. I will do my best to put them into practice. But as you know it's not easy. Thank you so much for your time and support.

Carl Thomas

Post Extras: Remind Me!   Notify Moderator  
Mac
Newbie

Reged: 12/14/04
Posts: 2
Loc: Kansas city
Re: Help and support
      #126142 - 12/14/04 08:04 PM

Carl..............
Anytime you want to talk just email.......Any support I can be............I am here. And yes....it is difficult.........words and feelings can't describe............keep plugging away.....
Mark

Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Help and support new
      #126171 - 12/14/04 11:46 PM

Hi Carl:

hang in there! I went through this with my partner in 1993....It;s really hard. Can he get T-20? Or if he's resistant to some of the drugs, it still helps to take them. R

Post Extras: Remind Me!   Notify Moderator  
Pages: 1 | 2 | (show all)


What's New at TheBody.com

Additional Information
0 registered and 1 anonymous users are browsing this forum.

Moderator:  TheBody, bogart, crabman, riverprincess 

Permissions
      You cannot start new topics
      You cannot reply to topics
      HTML is enabled
      UBBCode is enabled

Thread views: 12550

 
Jump to

Contact Us | Privacy Statement The Body

*
UBB.threads™ 6.2.3