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Author Topic: Also recently diagnosed  (Read 6644 times)

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Offline MarkB

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  • Posts: 292
Also recently diagnosed
« on: January 29, 2008, 09:28:33 PM »
Hello

I have also recently been diagnosed HIV+. The diagnosis came at a very difficult time for me, as I was then nursing my terminally ill mother (who has since died) and attempting to find more supportive accommodation for my father who was suffering from Alzheimer's.

I live in a very rural environment and am quite isolated. I am terrified that the wider community may get to know about it, but even telling people who have been close to me has been a mixed and very revealing experience. Although several have been understanding, one family whom i have known for years said that they did not feel they could continue the friendship ("we do have the children to think of ..."). A guy I had been seeing with the hope of developing an intimacy was horrified and suggested that I do the human race a favour and shoot myself: I'm beginning to think he may have a point.

The doctor has told me that HIV/AIDS is not a death sentence. Perhaps not; but it does feel like a life sentence, and one which I really do not wish to endure. It is the first thing I think about in the morning and the last thing I think about at night; I feel like a leper, and I do not wish to continue living like this.

Thank you for reading my post.


Offline anniebc

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Re: Also recently diagnosed
« Reply #1 on: January 29, 2008, 10:41:24 PM »
Hi Aelwyd

Welcome to the forum, you will find everything you need to know in the lessons here and from the guys who will give you all the support you need.

Quote
A guy I had been seeing with the hope of developing an intimacy was horrified and suggested that I do the human race a favour and shoot myself: I'm beginning to think he may have a point.

OK, clearly this is not the guy for you and he certainly does NOT have a point, so you can get that out of your head right now.

I don't see HIV as a life sentence as such but I do accept it will be with me for life..reaction to HIV is different, no two people are really the same, but over time you will find a way of dealing with it that suits you, thousands of people are living with HIV and living full and rewarding lives despite HIV, you can do it too..you need to make choices, choose to take control, make informed decisions and get on with your life, now this is not always easy, you have to give yourself time.

First of all you need  find a Doctor who specialises in HIV,  and look for information that will help you through this..knowledge is power..also is there someone you can trust?, someone you can talk to?  someone who will not judge you on your lifestyle, sexuality or for being HIV.

Just try and be patient, things will settle down, trust me..and remember HIV does not stop you from being the person you were before your diagnosis.

If you have any questions please don't hesitate to ask...the guys here are only to willing to help.

Please stay in touch.

Hugs
Jan

-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Matty the Damned

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Re: Also recently diagnosed
« Reply #2 on: January 29, 2008, 10:49:36 PM »
Matty the Damned has gotta agree with Lady Jan here Aelwyd:

OK, clearly this is not the guy for you and he certainly does NOT have a point, so you can get that out of your head right now.

In fact I'll go one step further and suggest that the fellow in question is a dead set fucking idiot. Frankly, he's the one humanity can do without. Encourage him to start his car in a closed garage with the windows down.

As for more general advice, I can't really add to what Her Janship has already told you except to say that you're very welcome here in our Forums and I hope you decide to stay with us.

Be well sweetpea, :-*

MtD

Offline komnaes

  • Member
  • Posts: 1,893
Re: Also recently diagnosed
« Reply #3 on: January 29, 2008, 11:01:40 PM »
Hey, first welcome to the forums.

Just from this little post we can tell that you're a caring person - caring for your mother and now looking after your dad with Alzheimer. So no one has the right to tell you to such cruel things as shooting yourself for the good of humanity (it even makes me angry just repeating this).

You need also to look after yourself, physically and mentally. It's not a self sentence, it's a health condition. It's no small matter though and you need all the strength and in particular "self love" to carry you through..

We all come together here to get supports, exchange information and, well, just to BS (go check out the Off Topic forum... ;D ), and I hope you'd find it as fun and useful as I have been since my diagnosis...

Hugs, Shaun

Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline MarkB

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  • Posts: 292
Re: Also recently diagnosed
« Reply #4 on: January 29, 2008, 11:50:44 PM »
I really am most grateful to you for responding as you did - I have felt particularly low recently, and perhaps bereavements + diagnosis + sheer physical and emotional exhaustion have led me to this point. I can't see the way ahead right now, but the fact that you have is itself an encouragement to me. This is, however, the loneliest and darkest place I have ever been.

Love to you,

Aelwyd

Offline Matty the Damned

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Re: Also recently diagnosed
« Reply #5 on: January 29, 2008, 11:56:21 PM »
Honey,

Have you heard of the Pits of Misery and the Depths of Despair?

Hello in there! :)

We've all been where you are and the most important thing that I can tell you right now is:

Everything is going to be OK.

Really it is. It may not seem like it, but it will be. Part of getting through this initial ghastliness is finding others like yourself and you've done that. You've found us.

The other thing that might help is finding a counselor or therapist to help you adjust to your diagnosis.

Be well,

MtD

Offline MarkB

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  • Posts: 292
Re: Also recently diagnosed
« Reply #6 on: January 30, 2008, 12:28:44 AM »
Matty

Again, thank you is too small a word for your encouragement. Where I live the support systems are nonexistent. The nearest hospitals which have HIV clinics are 90 and 120 miles away respectively, so I have to travel for my tests and results. At the time, it was a surreal experience: I was informed of the diagnosis, given a date for follow-up tests and found myself outside the door. It felt like one of those vivid dreams you will be glad to have woken up from. As my CD4 count is supposed to be reasonable (600) and my viral load reduced itself from 245,000 to 9,000 at my second test, I have not been put on any medication as yet and am supposed to see the doctor every three months.

Since my diagnosis I have had contact with precisely one other person whom I know to be HIV+. This forum is my second contact with anyone in the same situation as me, and until now I have felt utterly alone. Most of the gay men I have known were adamant that they would never date an HIV+ man, and anyway the very last thing I would want is to put another person at risk of infection. Also the clinic counsellor spelt out in no uncertain terms the dangers of re-infecting myself through sexual contact with another HIV+ person, so I am resigned to celibacy for the rest of my life. This, plus the loss of a number of people I thought I could tell, only adds to the sense of worthlessness I feel right now. Oblivion would be a welcome friend, to be honest.

Beyond obvious things like getting fitter and not having sex, I know absolutely nothing about what I am supposed to do between now and when I go on medication. Any counsel and advice would be welcome.

Aelwyd

Offline Liouxie Lioux

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  • Posts: 6
Re: Also recently diagnosed
« Reply #7 on: January 30, 2008, 12:49:12 AM »
Sweetie, I was diagnosed myself only a month ago.  So I can't offer tons of personal perspective but...  I did work at Gay Men's Health Crisis in NYC for about six years.   Go to their website.  They have tons of info...  You might look at their newletter Treatment Issues.  You might even call them.

It's easy to give advice I know but you need access to good info and this is one place to start.  Good luck.  I am with you.
Liouxie Lioux

Offline aztecan

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  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Also recently diagnosed
« Reply #8 on: January 30, 2008, 01:20:06 AM »
Hey Aelwyd,

Sorry for the diagnosis. Believe me when I tell you the first year is a real b*&ch, especially emotionally. Add to that the other issues you have been dealing with, its no wonder you are feeling depressed and alone.

I think the most important thing to remember is life isn't over. Yes, your life has changed, but it will go on (despite what that shithead quasi-boyfriend told you).

There is no reason to stop enjoying what you enjoyed in the past, pursuing the same goals, continuing on with your life.

In my case, once I got over the shock and depression, I found life had actually taken on greater meaning for me because the virus reminded, quite pointedly, that I was mortal and I should make the most of every moment.

This all probably sounds like banality of the highest order right now. So, for now, hang in there and just take it a day at a time.

You might take a look at the lessons here. They have a great overview of HIV and how to start taking care of yourself.

Above all, remember you are not alone. We are here for you.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Matty the Damned

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Re: Also recently diagnosed
« Reply #9 on: January 30, 2008, 01:24:52 AM »
Wyd,

Your numbers are good. Your CD4 count is above the bottom end of the normal range (500) and your VL count is fluctuating in the way one would expect for someone who is recently infected.

As for this:

Since my diagnosis I have had contact with precisely one other person whom I know to be HIV+. This forum is my second contact with anyone in the same situation as me, and until now I have felt utterly alone. Most of the gay men I have known were adamant that they would never date an HIV+ man, and anyway the very last thing I would want is to put another person at risk of infection. Also the clinic counsellor spelt out in no uncertain terms the dangers of re-infecting myself through sexual contact with another HIV+ person, so I am resigned to celibacy for the rest of my life. This, plus the loss of a number of people I thought I could tell, only adds to the sense of worthlessness I feel right now. Oblivion would be a welcome friend, to be honest.


I have to say some of the advice you've received from the clinic counselor is not quite right. Re-infection is not a danger, in fact it's extremely uncommon. The number of confirmed cases of re-infection worldwide number less than two dozen. And yes, I do know this for a fact. :)

But let's not fuss about such things right now. There's plenty of time for that.

The more important issue here is that you feel worthless. You are not worthless. You are just as worthy as you were before you were infected. What's more the sense of isolation and abandonment you're feeling right now is very common for a newly diagnosed person.

When I said to you that "Everything is going to be OK", I meant it. I know it's hard to see that from where you're sitting right now, but it's true. Remember, I've been where you are now. So has every other member of this forum and, for the most part, we've pulled through.

I've got every reason to believe you'll pull through as well.

Matty the Damned is many things, but he's no bullshit artist. Ask around, you'll see. ;)

My advice is that you have a read through our excellent Lessons Section. These explain the things you need to know in plain simple English. AIDSmeds is the leading HIV/AIDS site on the whole entire Internets. No other place comes even close to providing the kind of sound, sensible HIV information that we provide here.

You might also want to read through some of our other forums. In particular you can check out our Living With forum and, if you feel so inclined, the Mental Health forum. There's an amazing wealth of wisdom and support to be had.

Most of all, take a deep breath and take your time. You're not going to get sick and die tomorrow.

Remember, we're always here babe.

Fond regards,

MtD

Offline MarkB

  • Member
  • Posts: 292
Re: Also recently diagnosed
« Reply #10 on: January 30, 2008, 03:13:05 AM »
I'm encouraged, Matty, and will read the section you suggest.

What is a mystery to me is why it is that in other countries newly diagnosed people are often put straight on medication, and in the UK they wait for your blood count to drop below 350 (I think). Who is right and who is wrong on this?

And is it true that there are countries I can no longer visit, such as the USA?

Hugs back,

Aelwyd

Offline Matty the Damned

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Re: Also recently diagnosed
« Reply #11 on: January 30, 2008, 03:52:31 AM »
What is a mystery to me is why it is that in other countries newly diagnosed people are often put straight on medication, and in the UK they wait for your blood count to drop below 350 (I think). Who is right and who is wrong on this?


Well, as you'll discover, there's rarely one set opinion in the fabulous world of HIV treatments and clinical guidelines vary from place to place.

In the mid 1990's when combination therapy became a viable reality the idea was to "hit hard and hit early" so many newly diagnosed people were placed straight on HAART (Highly Active Anti-Retroviral Therapy). The idea being that suppressing viral load straight away would be the best way to preserve optimal immune function.

But HAART is toxic stuff and can have very serious long term side effects.

Now in many places (the UK, Europe, Australia) a more careful "wait and see" approach is taken. And you're right, in the UK and Europe, HAART is generally not commenced until or unless a person's CD4 count drops below 350 cells per mm3.

In Australia (where I live) that number is still around 200-250, but it's not set in stone.

In reality a person with a CD4 count above 500 has normal immune function and really isn't prone to opportunistic infections.

It's important to remember that HIV medications used to suppress viral load. They have no direct impact on CD4 counts. The idea being that suppressing viral load to an undetectable level allows the immune system to recover from the ravages of HIV infection.

Your CD4 count of 600 is quite good and given that you're only newly diagnosed, the complex decision of when to start HAART (and which combo will suit you best) is one you can afford to delay. It's also important to remember that one set of bloods doesn't give you an accurate picture of how your infection is proceeding. It's all about trends over time. You'll need three or four sets of results taken over a number of months, even up to a year before you and your doctor will have a decent idea of what to do.

See what I mean when I say complicated? :)

But don't fret Sugar-Bear, there really is no need to rush. Your current schedule of 3 monthly testing is the right one and, what's more, don't feel that you have to get your head around all this stuff right away. You won't be able to. Remember that commencing medications is something you should do when you're ready to and you'll need to work with your doctor and other health care workers to decide when that time is.

Not only that but there are literally dozens of wise minds in this place who can help you on your journey to comprehending AIDS.

Also, many countries, not just the US have travel restrictions on HIV positive people.

Fondly,

MtD

Offline Benoit

  • Member
  • Posts: 8
Re: Also recently diagnosed
« Reply #12 on: January 30, 2008, 05:38:57 AM »
Hi Aelwyd,

The guy who told you that nasty thing that you shoot yourself only showed he's of low mentality.

These so called friends who ended a friendship cos they have kids to think of! They fear Hiv through ignorance. There are thousands in UK who dont know they are Hiv+ & bringing up a small family.

My siblings know I'm Hiv+ & I'm uncle to 13 aged between 17 years & 1O months and my siblings have no fear that their kids are put at any risk because they are educated about Hiv and many Hiv- aren't & these friends who ended a friendship cos of your Hiv status fall into the category of not being educated.

Being Hiv+ does bring bad experiences & rejection is hurtful from friends, but when meeting a guy I was told its best to tell them at the start about being Hiv+ cos if they decide to reject you then its less hurtful cos the rejection happens before any attachment has taken place & its the virus they reject not you but many with Hiv are looking for a relationship with a person who also has Hiv so disclosure wont end with rejection as it would from a person whose negative.

I was diagnosed 1O months ago & I live in a close knit rural community & I dont worry about people in my area knowing. I wouldnt like it but if it happened then it has nothing to do with them. Some people like gossip as it makes their own lives more interesting but always choose wisely if you tell anyone as you can't undo telling them. If people in my area found out & treated me differently then my advice to them is to get tested as anyone today who has unprotected sex cant say they aren't Hiv unless they get tested.

Hiv forces people to face the many issues but its best not to worry over things that may never happen as its best to cross bridges as you come to them in life as its all about keeping the right balance with the issues being Hiv+ brings to your life.

Hope this helps.
Diagnosed: March
2OO7
01/O8
CD4 COUNT: 5OO
CD4%: 33%
VL COUNT: 7,32O

Offline Dachshund

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Re: Also recently diagnosed
« Reply #13 on: January 30, 2008, 07:19:31 AM »
Hello

I have also recently been diagnosed HIV+. The diagnosis came at a very difficult time for me, as I was then nursing my terminally ill mother (who has since died) and attempting to find more supportive accommodation for my father who was suffering from Alzheimer's.

You've already received all the valuable advice you need so I won't parrot anything that's been said.

I will tell you that my HIV diagnosis coincided with my mother slipping into the grips of Alzheimer's roughly fifteen years ago. She died this past November of that horrible disease. I watched her slip away to that debilitating killer and realized I didn't have it half bad. In many ways helping my dad care for her forced me to step outside of myself and forget HIV. I had to, they needed me.

We all know the emotional roller coaster you're on right now. We've been there, and coming from a rural area like yourself I understand the feeling of isolation. Take a deep breath, you'll get through this. You have found the best place on the internet for HIV resources. The best one being the AIDSMEDS family. 

Sincerely,
Hal
 

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Also recently diagnosed
« Reply #14 on: January 30, 2008, 07:58:49 AM »
Hello Aelwyd

Welcome to the forums from another recent joiner.  As you've seen above there's lots of useful material in the lessons on this site, and a global community willing to talk at most any hour.  Sorry you've been having such a tough time of it, but its pretty normal to be focused on HIV right after you are diagnosed and its wonderful that you reached out to talk.

I thought I'd address two of the points you raised in your posts

Disclosure --
I am terrified that the wider community may get to know about it, but even telling people who have been close to me has been a mixed and very revealing experience. Although several have been understanding, one family whom i have known for years said that they did not feel they could continue the friendship ("we do have the children to think of ..."). A guy I had been seeing with the hope of developing an intimacy was horrified and suggested that I do the human race a favour and shoot myself: I'm beginning to think he may have a point.


There's thousands of pages of discussion about disclosing one's status in the back issues of these forums.  You can find them using the search button.  But just as a suggestion, you might want to slow down the pace of your disclosures until you've had a chance to become a little more grounded in the information in the lessons and the forums.  HIV really is just another disease -- no cure (yet), but lots of effective treatments these days -- however there's still a lot of mystery and prejudice out there lingering from when the means of transmission and effective means of treatment were unknown.  And you might be better prepared for these discussions after reading through more of the lessons and discussions.  But just a suggestion.

Sex --
Beyond obvious things like getting fitter and not having sex, I know absolutely nothing about what I am supposed to do between now and when I go on medication.
 
Er . .. condoms are quite effective in terms of stopping transmission of HIV.  And those who are adamantly opposed to ever using condoms are perhaps among the most likely to be joining our little band in the future.  With your current CD4 counts it doesn't appear that you are in imminent danger of picking up an opportunistic infection either, so not sure you need to be writing off sex just yet.  But you'll see a lot more discussion of that in the forums as well.

Hope to hear more from you

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline MarkB

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  • Posts: 292
Re: Also recently diagnosed
« Reply #15 on: January 30, 2008, 06:21:50 PM »
Thank you all.

Since diagnosis there have been good days and bad days. Today, for some reason, has been a bad day ...

Like being adrift on some silent sea of sadness and loneliness, I can as yet see no landfall, nor hope of any. I sat down and looked around me at the thousand things I just don't want to face, and started packing possessions away in boxes. It gave me something to do.

Aelwyd

Offline BT65

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  • Vegas baby!
Re: Also recently diagnosed
« Reply #16 on: January 30, 2008, 06:56:28 PM »
Aelwyd, welcome to our family. 

I've been HIV+ for 19 years and just this past November I lost my mum.  I helped take primary care of her at the end of her days and it was very rewarding.  It's like Hal said, it helped me get outside of myself.  So my condolences on your mum and now dealing with your dad.

You've already been told basically how you'll be feeling, and given some excellent advice.  These forums have really been such an excellent source of support.  I hope you stick around and become part of our group.  Well, I guess you're already part.  Just make yourself home here.  We're here for ya sweetie. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline MarkB

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  • Posts: 292
Re: Also recently diagnosed
« Reply #17 on: February 03, 2008, 03:24:13 PM »
Thanks to everyone, both here and offline, who have given so generously of their kindness, their wisdom and their time out of care for a total stranger: me.

I looked up, and suddenly there were other people around. People who knew and understood, and to whom nothing needed explaining. People who show deep compassion when it is needed, but who also tell it like it is, and are not afraid to challenge my self-pity. People who will keep me honest when I start kidding myself. People who might well succeed in keeping me human, and humane.

After a long conversation this morning with a member of this Forum (you know who you are!) I looked around me. I realised that I hadn't washed for a week, and had virtually no clean clothes left. The flat had become a Site of Special Scientific Interest and unopened letters going back more than a month had just been left on a table. Work stuff which had deadlines on them were lying beside them. I became aware of the fact that I was hungry and that wasn't actually surprising as the only thing I had eaten since last Monday was a pizza (I know that because the box was still there on the floor) and I had no food in the fridge. I sat and looked at all this. Then, very carefully, I cleaned and tidied a living space. It wasn't the whole flat; I didn't suddenly redecorate the place and do three weeks' worth of laundry: but it was a viable living space in which I could move around, and in which I could think.

Then I realised something else. I have a virus. It is not going to go away; it will certainly impact on my health and it may even hasten my death. But it is a VIRUS. It is not Me. It does not make me a bad person, or guilty of something I no longer have the power to redress, or someone less able to live with the same kind of care and compassion and commitment to others which many of you have shown to me. It does not take away my power to love.

Yes, it is frightening; yes, it has changed my life; yes, the future is uncertain and no, I don't know how things are going to turn out. But I have not become a Virus. I remain a Person. And I am not alone.

So thanks for welcoming me into your family and your friendship: I think I'll stay awhile if that's OK with you.

Love,

Aelwyd  :-*


Offline sweetasmeli

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Re: Also recently diagnosed
« Reply #18 on: February 03, 2008, 05:37:41 PM »
Quote
I think I'll stay awhile if that's OK with you.

Aelwyd, I think I can safely speak on behalf of everyone here when I say: That's more than ok with us. :)

I'll look forward to sharing that walk (and a donut!) sometime...I'll bring my own bell! ;)

Warm hugs to you
Debra xxx

PS: Cute avatar! :)
« Last Edit: February 05, 2008, 05:23:27 AM by sweetasmeli »
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline mjmel

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Re: Also recently diagnosed
« Reply #19 on: February 15, 2008, 07:32:58 AM »
Aelwyd, that recent post made me tear up a bit.
The warm and fuzzy kind of tears.
 :-*
Mike

 


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