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Author Topic: Just checking in  (Read 9725 times)

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Offline AlanBama

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Just checking in
« on: August 14, 2013, 09:35:29 AM »
Hello my friends and fellow LTSers!  First of all, let me apologize for being mostly absent from the forums for quite awhile.  It has taken me a long time to even get up the 'will' to try to write a post, because things are so weird for me these days.  I have been experiencing mental issues, as in REALLY POOR MEMORY.  Doctors visits have all run together in a never-ending blur....I try to write everything down now, and even that doesn't always work. 

Quite a few months back, I started experiencing shortness of breath, upon little or no exertion.  Just walking across the room can do it for me, to say nothing of climbing a flight of stairs.  I was referred to a pulmonologist, who put me through a barrage of testing; his conclusion was "mitochondrial myopathy".  It's mostly one of those things that "oh well, you have it but there's not a lot we can do about it".  He referred me to a neurologist for further testing.  Upon my initial exam with this guy, he decided that that was not my biggest concern, that I had "other things" that needed more immediate attention.  He has put me through a barrage of tests...the needles in the muscles thing (maybe EMG? does that sound right?) and most recently "evoked potential" which is one of the weirdest tests I have ever had in my 25+ yrs of dealing with hiv.  Also, I had a MRI of the brain and spine.   I have a feeling we are playing "go fish" with all this medical testing...just cast out a line, see what you reel in.  So far, they aren't really finding anything (that they are telling me about).  Trying to get care in today's world of medicine is a trip in itself.  I have seen the quality of medical care go from top notch (80's) to bottom of the charts (2013).  For example, I had this MRI and evoked potential a few weeks ago; my next appointment (to find out the results) is not until Nov. 5th.   I have a feeling this guy is going to say "sir, we've discovered that you have pretty severe peripheral neuropathy, and we can put you on neurontin/gabapentin if you'd like to try that".   I told them DAY ONE that I have had PN since 1992, and no, I did not want the neurontin, I don't like it.  Before the testing, he did mumble something about being concerned that my blood/brain barrier was not being crossed with HAART therapy....

I was so glad to receive the latest POZ magazine, and see that it was about Longtime Survivors!  In one article, a guy expressed my feelings so well:  "it's like being a Martian, living on Earth; except no one knows you are from Mars".  I look forward to reading the whole magazine.

I was recently so blessed to get to see Jan and her friend Jen again; we have not been together since 2007 in San Francisco.  We had a great time at JG's house, and I am also very thankful for him and his friendship.  We serve on a Patient Advisory Board together at our clinic.

I'm going to try to not be such a "stranger" and check in more often.  Some days, my brain is firing on all cylinders...some days, not so much so. 

Much love and appreciation to all of you,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Online leatherman

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Re: Just checking in
« Reply #1 on: August 14, 2013, 11:29:44 AM »

Glad to read you're back; sorry to hear about such troubles.
What's that old saying, "if it's not one thing, it's another" LOL
Hang in there!

by the way, we just passed the Tin Man's b-day. Jack Haley's was born on Aug 10, 1898 ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: Just checking in
« Reply #2 on: August 14, 2013, 06:02:36 PM »
Alan, I'm typing this with pain jolting through my right foot, so I sympathize with the PN issues.  I'm so sorry you're going through all that bullshit.  I agree, medical care has declined.  One of my clients has growing KS.  He was seeing a local infectious disease doctor.  The doctor kept telling him "we'll just watch it."  WTF?  It's spreading!  So, I send for his labs, get them, and find out he's had a detectable and growing viral load for a year!  WTF is this doctor doing?  Luckily I was able to go to his primary care doctor's with him and demanded a second opinion.  He saw an oncologist and is on some liquid chemo med.  And also got him into see my doctor for the HIV issues.

So I agree about the medical care.  It has really gone down.  I cannot imagine the frustration you're going through, wanting to know what's going on, and not being told squat.  I hope you're able to keep your sanity through all this!  I believe you're pretty resilient, though I know we all have our breaking points.  Hang in there, pm me if you want to and I'll send you my number.  Luv ya!  Glad to see you posting.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeff G

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Re: Just checking in
« Reply #3 on: August 14, 2013, 06:37:37 PM »
Hi Allen , I sympathize with you and know how you struggle . You are always so gracious and smiling when I see you Layne it could be easy to forget how much we share in common both past and present .

I think many of us LTS folks walk the earth without most mortals realizing what it cost us to be here , what it took .

I'm very happy to call you my friend and its my hope that you join us here more often . 

Offline Theyer

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Re: Just checking in
« Reply #4 on: August 16, 2013, 06:46:14 AM »
Hi Alan,

Your post touched a nerve. The part about the blur off tests.Last week my Pain control Dr. suggested a referral to the Neurologist because off the increasing problems I have with balance.

I declined, as I am also in the middle off dental work and know how much it takes out off me more than one medical appointment a week. So as the Pain Control Dr agreed it was highly unlikely that the neurologist findings would change much for me other than possably giving more info for us all . I will wait until the Mouth work is finished and hope that I don,t break anything with my at least weekly falls.

Its alarming to read all your comments about the decline in Care. And Bt your clients experience Falls into the catergory that I feel is emerging ,  that with combo treatment illness its a thing off the Past , the Pills will keep the immune system strong and that will fight off what may emerge. This confuses me as I have had all my serious illness with a negative viral load .

In the UK anyone receiving benefits is under ever increasing scrutiny , I am awaiting along with everyone else who receive the benefit a complete reassessment. This reassessment carried out by a company that won the contact Has a 40% fail rate. And a huge overturn figure on appeal . Scandals have emerged about there decisions and still our Government push through like a blind bulldozer, It feels so much less secure now to 5 even 10 years ago. Then I had been awarded benefits "for life" and could put all my attention into getting and staying well, now We wait for the ax to drop and our incomes stopped until the appeal process finishes . A comedian on the radio said that the Disability assessment panel had been renamed Lourdes , you went in ill came out totally cured.

Glad you intend to hang out here more see what your post has generated already.

BTW , was the weirdest test the one where your are strapped standing , monitor wires a spaghetti from you to bleeping machines , and they wait to see if you faint within an hour?

The very best to you
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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Re: Just checking in
« Reply #5 on: August 16, 2013, 10:27:05 AM »
Unfortunately, many of us understand completely.  Our generation will always be the guinea pigs for the progression of this virus. 

hugs
Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline aztecan

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Re: Just checking in
« Reply #6 on: August 16, 2013, 10:50:15 PM »
Alan, my dear friend, I understand how you feel. I think we LTSers have all felt that way at one time or another.

You were much in my thoughts this past week, as we at AMG in Chicago reminisced about the earlier ones. Your presence in San Francisco was well remembered and spoken of fondly.

I am so sorry you are having so many difficulties. I agree, we, the guinea pigs of HIV, seem to be overlooked a lot.

I will be keeping you in my thoughts and prayers. I also will send positive energy to you as I can.

HUGS,

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

Offline AlanBama

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Re: Just checking in
« Reply #7 on: August 19, 2013, 03:05:59 PM »
Hi guys, I can feel the love in all your replies.  Thank you so much!  Mark, I miss seeing you buddy....and Betty, you are an angel, and have always been so sweet to me...I appreciate you more than you know.

My Jeff -- you know we love you buddy.  You are a great friend, and we both appreciate you so much. 

The latest issue of POZ has stirred up so many feelings and emotions in me....I have felt, for years, that I am "getting by", but not "THRIVING".  I'm sure you know what I mean.  It is more and more of a struggle to get through the weeks.  I also have a friend who has been EXTREMELY ill and in the hospital; he is my best friend of 35+ years, and hiv negative.  He has colo-rectal cancer, has had a colostomy, and is on a feeding tube...one problem after another.  Seeing him in such a state has stirred up my bad memories of being in the hospital so much in the 90's, feelings I have repressed for a long time.  Health care now is all done on the computer; not much verbal contact between care providers; if it isn't on the computer screen, it isn't going to happen.  He was getting WAY too much TPN (or whatever you get from a feeding tube), at too high a rate, and not diluted enough; it has caused a major impaction, which he is not over yet....the nurses had no communication (or so it seems) with the doctor who kept ordering it to be run through at full force, full strength.  This crazy merry-go-round I have been on for the last 25+ years is just about to sling me off.....but I'm trying to keep on hangin' on!   Love to all of you,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline harleymc

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Re: Just checking in
« Reply #8 on: September 05, 2013, 07:22:35 AM »
Dear Alan,
 sorry to hear about your health woes, I've a very dear LTS friend here in oz that is also going though the Neurological issues, memory issues, headaches, nightmares, lack of sleep etc etc etc. The docs are trying hard to get drugs that'll cross the brain blood barrier, without viral resistance and hopefully minimal side effects in the brain.

Paul's a take charge kind of gentleman but this is a tough one even for him. So I totally feel for you, wish I was there to do all those silly friend things for you like cook a meal, take a walk together, & mostly to give you a big hug.

Big virtual hugs to you.

Offline bear60

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Re: Just checking in
« Reply #9 on: September 05, 2013, 02:23:07 PM »
Hi Alan
Good to hear from you.
Its too bad your pain is so elusive.  My partner Kurt is going thru something similar.....every test in the book shows ....nothing.
But you had me at climbing stairs and out of breath thinking.....oh ok he needs bypass surgery..   a stent or some such. Kurt had that done a few years ago.
Nothing is ever simple is it.
Joel
Poz Bear Type in Philadelphia

Offline AlanBama

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Re: Just checking in
« Reply #10 on: September 17, 2013, 05:26:01 PM »
FOLLOW UP:

Well, I saw my doctor  (for about 5 minutes) yesterday.  My Nurse Practitioner had spent some time with me, listened to my lungs, etc.  My REAL doctor, (of 18 years, in Atlanta) used to tell me "you know your own body better than anybody".   I sure don't get that statement from my current doctor(s) anymore....I started Prezista, and gained about 15 lbs.   So, my COMMON SENSE tells me that perhaps that drug needs to be changed for something else....but NO WAY, according to them.   I need to walk, workout and eat less (maybe a salad each day?  who knows) to try to lose this.  I even asked to go back on Viramune and Truvada, but that was also disregarded.

Us LTSers are bumped out to 6-month and 1-yr appointments, while they make time and room for all the newly diagnosed and those new to our clinic (from a closed county facility, about 850 of them!) with all their needs, and serious health issues from having untreated HIV disease.   Every study that is advertised and everything that is promoted seems to be about "keeping them in care" and "getting them in treatment" and "helping them stay adherent to their meds".   All of these are GOOD and ADMIRABLE things, and I am FOR all of it!  It just seems that they have pushed us out of the way, or at least that is how it feels.  Us who have tried to take care of ourselves, be compliant and educated about our disease, and have tried to do all the RIGHT things are now in the backseat.

Well, you know I have always said that AIDS is a journey we are all on together; it's just that some of us are travelling in different ways!   I have now moved from the backseat of my 1978 ratty Chrysler Cordoba to an old lawnmower trailer, being pulled behind it; it has a floppy rear gate, no tail lights, no tag...and I am being drug along by my fingertips holding on for dear life to the floppy rear gate....

HUGS to all,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Jeff G

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Re: Just checking in
« Reply #11 on: September 17, 2013, 05:36:28 PM »
I just need the visual of soiled nickers for the last part of your post to burned into my mind .

I go to the same clinic as Alan and its true , we seem to be rolled onto the back burner there and it can be frustrating at times . Hang in there Alan , 10 doctors will come and go before you are done with that clinic , we seem to get new doctors about once a year .

Offline AlanBama

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Re: Just checking in
« Reply #12 on: September 18, 2013, 10:04:22 AM »
Yes, Jeff you are right; I am on my 3rd one since 2007.   Please forgive me for my "rant", I certainly am grateful for the care I receive.  I also feel like my providers are probably doing the best they can, in a tough situation.  There are just TOO MANY people, and too few doctors/nurses.

What I did not mention was that I look GREAT, on paper.  CD4 in the 600+ range, at 34%, and undetectable VL.   I'm sure that is the biggest factor in them pushing me out to 6 mos. for my next visit. 

I am just having trouble making the mental "switch" from the message of our healthcare providers, from "be educated, be compliant, PARTNER with your doctor, and stay involved in your healthcare" to "we need to bend over backwards to get people into care who don't want to be in care, and who won't take their meds or keep their appointments".   Now, do these people need help?  CERTAINLY.  I am 100% for helping ANYONE with hiv, and all of us deserve care and treatment.  It's just that I am feeling the "back burner" syndrome.

So my journey continues....
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Jeff G

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Re: Just checking in
« Reply #13 on: September 18, 2013, 10:13:39 AM »
OH Alan , its not a rant and I agree totally . I don't think our doctors appreciate what 30 years of inflammation does to a body , I doubt most people can understand unless you have lived the life . 

It was only in the last few years that doctors begrudgingly admitted that LTS and chronic pain for complications due to inflammation and other factors was valid and not all in our heads .

My numbers mostly look good on paper but I struggle every day , I know you do too .     

Offline BT65

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Re: Just checking in
« Reply #14 on: September 18, 2013, 05:29:19 PM »
I totally agree with both Alan and Jeff.  These doctors do not really know the full effects of long term HIV and how it feels, the changes that happen to the body, mind, etc. 

And yes, there are too few doctors specializing in HIV anymore.  We only have a few and too many people.  And trying to keep track of everyone taking their medication is not something I can feasibly do, even though it may be a "written part" of my job.  I do ask when I talk to clients, but there are so many clients, and not enough of us to work with them as intensely as they need.  Not enough money.  Isn't that always the case?

And Alan, thanks for your pm about SSA and work reviews.  They certainly scare the hell out of people.  I was expecting them to get back to me by now, since they only gave me 14 days to get the information back.  The waiting continues.....
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

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Re: Just checking in
« Reply #15 on: September 19, 2013, 09:36:17 AM »
Boy Alan, you have, once again, broached a very timely topic.

I am also one of those who went from the back seat to the trailer being towed behind.

In part, it is my own fault, because I get too busy. My most recent doctor visit, last month, was the first since November 2012.

I am also one of those, like Betty, who has to corral the miscreants and try to get them into care.

I have a half-dozen right now who are either very sloppy with their meds, or just don't take them.

The doctor here has clinic on Tuesday. This past week, none of those who came to see him had bothered to get their labs done. None.

But Alan, I am especially concerned about those of you in the South. From what I can tell, the South is rapidly becoming a third-world country and I am concerned about those I know living there. (I won't go into the politics of this, but I think you already understand them better than I.)

I don't have solutions for you. But please know you are ever in my thoughts.

HUGS,

Mark

« Last Edit: September 19, 2013, 09:38:26 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline AlanBama

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Re: Just checking in
« Reply #16 on: November 04, 2013, 02:55:02 PM »
Greetings folks!  Just checking in, to read a bit and to say "hello".

It always overwhelms me when I read in this forum - the amount of love and compassion I feel, that WE feel, for each other.

Mark, you are spot on, this state is becoming a "third world" country, regarding our hiv clinical care.  We just keep plugging along, hoping (and praying) for the best.

Special hugs to Jeff for giving me a much needed 'whop upside the head', regarding something stupid I was doing to myself.  I was taking a "drug holiday" with one of my meds, which of COURSE I am smart enough to know not to do -- but I was doing it anyway, mostly out of frustration at being #000590659 instead of "Alan" to my healthcare providers.  Some of you will understand what I mean by that.

The journey continues....

Love and Light to all,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Jeff G

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Re: Just checking in
« Reply #17 on: November 04, 2013, 03:16:23 PM »
Greetings folks!  Just checking in, to read a bit and to say "hello".

It always overwhelms me when I read in this forum - the amount of love and compassion I feel, that WE feel, for each other.

Mark, you are spot on, this state is becoming a "third world" country, regarding our hiv clinical care.  We just keep plugging along, hoping (and praying) for the best.

Special hugs to Jeff for giving me a much needed 'whop upside the head', regarding something stupid I was doing to myself.  I was taking a "drug holiday" with one of my meds, which of COURSE I am smart enough to know not to do -- but I was doing it anyway, mostly out of frustration at being #000590659 instead of "Alan" to my healthcare providers.  Some of you will understand what I mean by that.

The journey continues....

Love and Light to all,
Alan

I fully expect a whop upside the head as needed from you guys and know you will deliver  . As tough as we are even us LTS need a kick in the pants sometimes for a reality check .

Offline Joe K

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Re: Just checking in
« Reply #18 on: November 04, 2013, 03:43:31 PM »
Dear Allan,

How good to see you and I am very sorry to hear or your trials and tribulations.  While I sympathize with the "back burner" issue, in one way, I consider it a badge of honor, that we worked damn hard to earn.  It always seemed to me, that the more a patient knew and the more compliant and progressive they were in treating their HIV, that the "perception" of their needs were lowered in the eyes of health professionals.  In a way, they see us as hardened veterans, who know when something is wrong and it seems they "expect" us to make our issues know, with little prodding.

I go to a hospital clinic and I get a new doctor every other year.  The first meeting always seem to be the same.  They review my chart and then ask if I have any issues.  They seem unsure of what to do with me, given my history and since I'm a low maintenance kind of guy, they are content to let me call the shots, most of the time.

I think that maybe you need to be a little stronger in voicing your concerns.  You are the ultimate gentleman, however, there are times when even a gentleman needs to raise a fuss to make his point heard.

Joe

Offline BT65

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Re: Just checking in
« Reply #19 on: November 08, 2013, 04:06:44 AM »
Alan, I'm glad Jeff was there to "assist" you with the med issue.  Good to hear from you also.  I know medical care is getting very streamlined as far as doctor's remembering we're individuals instead of just "cases."  It sucks.

I hope you're doing better, you can always pm me. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline BT65

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Re: Just checking in
« Reply #20 on: November 16, 2013, 05:01:17 PM »
TODAY IS ALAN'S BIRTHDAY!  HAPPY BIRTHDAY SWEETHEART! 

Love you and I hope you have fun celebrating. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Theyer

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Re: Just checking in
« Reply #21 on: November 17, 2013, 04:27:30 AM »
Hello Alan , we do not know each other so this is me introducing myself and wishing you happy birthday.Also to let you know how often my friends here mention you always with such fondness and love.

You have given me a term Back Burner that describes what I have been sensing over the past couple off years. Fortunately my clinic has started to recognize it. By chance ,lucky for me, my HIV Doc has been given special responsibilities for HIV and aging or is it Aging and HIV , anyway its a start.

Is it a struggle to attract newly Qualified Doctors into HIV work in USA now? Or like so much does it vary from state to state , private/public ?

Enough off that for now and back to wishing you a great birthday week.

Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline mitch777

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Re: Just checking in
« Reply #22 on: November 17, 2013, 12:18:07 PM »
Happy belated birthday Alan! :)
32 years hiv+ (oct. 2013) with a curtsy.

Offline Jeff G

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Re: Just checking in
« Reply #23 on: November 17, 2013, 12:50:31 PM »
Alan and Layne joined me for dinner last night with our friends John and Tim . We had dinner out at a Italian place I have not eaten at yet and had a great time .

We went for a few drinks and back to my house for birthday cake , it was a nice tasty cake even if his name was spelled wrong on it . Bad spelling seems to be a thing with me and cakes don't have spell check . In my defense the mistake was the cake decorators fault and I didn't notice until I got it home . 
   

Offline AlanBama

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Re: Just checking in
« Reply #24 on: November 23, 2013, 03:21:24 PM »
Thanks for the birthday greetings!  I had a WONDERFUL birthday, spent with my partner and my friends.  What could be better?

You should have seen this TIRED old group of guys, attempting to "go out".   We sat around and looked at each other awhile.....our "going out" time is still WAY too early for anyone much to be in the clubs....but we had fun.   We just decided we'd have MORE fun if we went home to Jeff's and got comfortable.

Jeff, you have become a great friend to me, and THANK YOU so much for the wonderful birthday.   We love you!

HUGS all around,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline deibster

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Re: Just checking in
« Reply #25 on: November 26, 2013, 12:36:55 AM »
Hello all,
I know it's difficult to up and move, but I don't understand how a LTSer can live in a Red state where the state keeps closing hiv clinics. I live in a small, gay town in MA and we have a great non-profit health organization. My doc is an Infectious disease doc who moved here when they closed St. Vincent's hospital in Greenwich Village, NY. He spends as much time as I need with me, 3 or 4 times per year. Our clinic is part of the Beth Israel Teaching Hospital in Boston, so whatever specialists we need come out here once or twice a month, Pulmonologists, etc.

We have a great ADAP program (called HDAP in MA), without any waiting list to get on the program. The same goes for ADAP in NY, and both states allow the Max income, that the Feds allow, to still be eligible for ADAP.
Hugs from Provincetown, Deiby
« Last Edit: November 26, 2013, 12:41:01 AM by deibster »
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline AlanBama

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Re: Just checking in
« Reply #26 on: November 26, 2013, 12:37:47 PM »
Hi deibster.

I totally agree that it would be much easier, as far as hiv care goes, to live in a 'progressive' state, rather than a backwards one like AL.   The thing about that is:
this is our home.   I was born and grew up here.   I have lived in two other states during my lifetime (GA and OK) but in the end, I moved back home.  My two brothers live here.   One of them provides MAJOR support to me and my partner.  My best friend of 36 yrs. lives here.  My partner still has both parents living (age 90 and 91), in AL.

So, do we move to a more progressive state like MA, or even CA, where we don't know anyone but would have better hiv care?  Or do we stick it out where we are, with family/friends and not-so-top-notch care?   It's a hard decision, and believe me, it is one we have pondered often.   Unfortunately, there is no easy answer. 

I'd say that for right now, we're doing the best we can.   :D
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline BT65

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Re: Just checking in
« Reply #27 on: November 27, 2013, 03:04:49 AM »
Alan, I know what you mean about it being difficult to move from your home.  I live in a red state, Indiana, and am only 20 minutes away from a town in Michigan, where I grew up. 

My daughter moved to Washington state and is always urging me to move there.  But, I'm familiar with this area, I have a great doctor, and a lot of my family still lives here.  Including my two oldest grandchildren.  So, while it may be nice to live in a more liberal area, it's not as easy as it sounds.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AlanBama

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Re: Just checking in
« Reply #28 on: April 22, 2014, 12:51:22 PM »
Hello my friends                             22 April 2014

I'm not going to attempt to post much today; my thoughts are all jumbled up, and I am still reeling from just learning that Rocky has died.   It is my own fault for not knowing; I don't check in to the forums much, and when I do, I only come to LTS, not Living With.

Just wanted to say hello, that I love you all, and that I could REALLY use a "group hug" today.   There are days that I feel I have outlived my usefulness, and today is one of them.   I'm going to try to relax now, and count all the many blessing I have in my life to be grateful for.

HUGS -- Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline wolfter

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Re: Just checking in
« Reply #29 on: April 22, 2014, 01:03:10 PM »
I'm so sorry that you're feeling this way.  I'm sure a lot of it is dealing with the sudden loss of Rocky.  I truly believe that everyone was upset and full of shock and never considered if everyone who knew him had heard the news.

I couldn't even bring myself to comment at first and then it was a short quick post. 

Sending part of that group hug now. 

huge hugs buddy
greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Jeff G

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Re: Just checking in
« Reply #30 on: April 22, 2014, 01:26:16 PM »
Hugs Alan . We all need them sometime .

Offline Theyer

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Re: Just checking in
« Reply #31 on: April 22, 2014, 03:55:19 PM »
Dearest Alan,


How could someone like you outlive there usefulness , you may feel it ,but the essence off you makes the act impossible.

Tell your loved ones you love them , and try to reflect on how much you mean to so many. Tis the problem inescapable age brings losses.

Many hugs
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline deibster

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Re: Just checking in
« Reply #32 on: April 22, 2014, 04:37:29 PM »
I hope and pray that you got some rest and feel a little better, Alan. As the Dalai Lama said,
Pain is inevitable, Suffering is optional.

Big Hugs my friend, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline mitch777

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Re: Just checking in
« Reply #33 on: April 22, 2014, 06:48:39 PM »
(((Alan)))
32 years hiv+ (oct. 2013) with a curtsy.

Offline Theyer

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Re: Just checking in
« Reply #34 on: April 23, 2014, 07:30:50 AM »
Hey Alan come and talk to us , its Jeffs birthday today , as far as I can make out he,s talking teeth.

MrWillywump posted a site dealing with a river Parade that I am showing to coma victims because it will make them smile.   And he,s is snickering about an English apple dear to my heart called Cox,s Orange PIPPIN,
No one has explained why English Cox is apt to make Mr Wump and Mr Mitchel snicker so I am guessing as we are the mature group it must be about penises but I hate not having it confirmed.

hugsnlove
michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline BT65

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Re: Just checking in
« Reply #35 on: April 24, 2014, 04:51:52 AM »
Love you, Alan. :-* :-*  Sorry I'm a little late.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline J.R.E.

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Re: Just checking in
« Reply #36 on: April 24, 2014, 11:25:47 AM »


Big ((((hugs)))) to you Alan.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 63 years young.

Offline AlanBama

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Re: Just checking in
« Reply #37 on: April 25, 2014, 11:03:49 AM »
Thanks everyone!  I am feeling better today.  I suppose we have all earned the right to have a BAD day now and then !

This long-term survivor shit gets to be quite overwhelming at times, doesn't it?  I think it's important to celebrate the positive things that happen, but also to allow ourselves to experience the negative things fully, as well.  As my dear friend and fellow LTSer Lis says, "let's keep it real".

I don't have any inspirational words of wisdom today....
Guess I'll get out and about and see people and things, and BE seen too.  As this old lady in my church says "Honey, it's better to be seen than to be viewed".  Ain't it the truth???

Love you all -- Alan

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline guitargal

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Re: Just checking in
« Reply #38 on: April 25, 2014, 04:20:11 PM »
glad you "checked in"

"For example, I had this MRI and evoked potential a few weeks ago; my next appointment (to find out the results) is not until Nov. 5th.  "

that is unacceptable..

Offline Theyer

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Re: Just checking in
« Reply #39 on: April 26, 2014, 06:31:47 AM »
Thanks everyone!  I am feeling better today.  I suppose we have all earned the right to have a BAD day now and then !

This long-term survivor shit gets to be quite overwhelming at times, doesn't it?  I think it's important to celebrate the positive things that happen, but also to allow ourselves to experience the negative things fully, as well.  As my dear friend and fellow LTSer Lis says, "let's keep it real".

I don't have any inspirational words of wisdom today....
Guess I'll get out and about and see people and things, and BE seen too.  As this old lady in my church says "Honey, it's better to be seen than to be viewed".  Ain't it the truth???

Love you all -- Alan



As to the ? you asked YES YES and YES, it,s hard work staying out off Hospital and keeping things going. And I am guilty off not keeping it real as I often want to use my forum time to escape or to use the most creative part off the day for. 

Love the old lady Quote.
Hugs Alan
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Theyer

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Re: Just checking in
« Reply #40 on: April 26, 2014, 06:36:03 AM »
glad you "checked in"

"For example, I had this MRI and evoked potential a few weeks ago; my next appointment (to find out the results) is not until Nov. 5th.  "

that is unacceptable..


I would be tempted to ask , Nov 5th what year please?

Yes that desearves a meltdown. 
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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Re: Just checking in
« Reply #41 on: April 27, 2014, 09:55:35 AM »
Hell Alan, so many of us have experienced bad years that occasional bad day is a piece of cake.  Glad you're feeling better.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline deibster

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Re: Just checking in
« Reply #42 on: April 29, 2014, 01:20:51 PM »
As the Dalia Lama said,
Pain is inevitable,
Suffering is optional.

Big hugs, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline AlanBama

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Re: Just checking in
« Reply #43 on: May 02, 2014, 11:52:42 AM »
Hi everyone!  thanks for the love, the hugs, and the laughs.   I love you all.

We're doing pretty well, I suppose; the husband has been ill for a couple of weeks now, but he is much better the last 2 days.   I took him for 'sick call' at our HIV Clinic on Wednesday; we might as well have visited the dark side of the moon, for all the good it did!  I know y'all are tired of my "poor quality health care" complaints, so I'll just keep them to myself. 

I will give you some snippets of a recent visit to the dermatologist at the clinic, just for comic relief!

We walk in;  nurse enters... "Why are you here"?
Me:  I'm here for follow up for the the cancerous lesions on my lower legs.
Nurse:  "Oh.  OK."   (writes that on a yellow sticky note, and sticks to billing sheet, which is the only piece of paper in the room)
Doctor comes in:   "So you're here for follow up.   What have you been treating these lesions with?"
Me: the Imiquimod cream you prescribed....did  6 weeks of treatment.   Then did not see you due to appointments being "bumped further out", for 6 months.
Doctor:  "Well the lesions are still there" (DUH) ; let's do another round of Imiquimod.  See you at the end of May".

Could have done the whole visit by phone!  LOL

HUGS, Alan   ;D
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Theyer

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Re: Just checking in
« Reply #44 on: May 03, 2014, 12:50:27 PM »
Indeed.
Alan vent the the stuff here its important. The detail,s like the nurse who could not spare the energy to add Hi and now remind me what are you here for you gorgeous reason for my paycheck

Manners, courtesy , respect can be kept up under huge levels off pressure, it helps manage and decrease the pressure for one thing.

 If the care you are receiving is poor blog it , I am sorry you have to experience it it but I also want the info as its a part off the whole that the forum has in terms off a historical document . Also off course the good stuff.

I find ignoring bad manners very effective, at the point where the worker is about to go melt down I then say
I,m sorry I had no idea that you where actually addressing a Patient in that manner, now that I realize you are.....it works and makes me feel so much better.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline AlanBama

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Re: Just checking in
« Reply #45 on: May 09, 2014, 04:42:41 PM »
I will see this doctor (dermatologist) again, on Wednesday May 14th; perhaps I will put my phone (or my partner's) on RECORD while we're in the exam room, so I can relay the conversation.... ;)

Coming up on 9 months with these cancer lesions; just one of MANY things that manages to strip you of your dignity/appearance.  It's time (past time, actually) here in North AL to start wearing shorts.  My legs, which used to be my best feature, are not much, but to add to the white glare  8)  I will have these ugly-looking spots, like sores, on full display....

I'm actually doing really well right now, both mentally and physically; my partner's been having a rough time lately, with prostatitis and UTI, and taking the powerful antibiotics to treat these....so we're home a lot.

Thanks for listening!   HUGS all around,

Alan

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline AlanBama

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Re: Just checking in
« Reply #46 on: June 08, 2014, 03:56:09 PM »
Hi gang

I had three lesions removed from my left lower leg by Electrodesiccation ("burned off") last Wednesday.  I was given an option of having them surgically removed (less scarring, but requires more visits, stitches, etc).  I opted for "immediate" remedy.   It means less trips for me to the dermatologist (65 miles away).   I asked what about the other lesions on that leg, and also on the other leg?   We will "watch and wait".

OK, I'm pretty good at that!  I can wait, and I can watch.

The upside to the whole day was a visit to Jeff's house and lunch at his favorite Chinese buffet.  I don't get to see him NEARLY often enough!

I've had a place on my gums that absolutely would NOT heal, despite many treatments and 'daily doctoring' by me, for over 9 months now.  Our HIV Dental clinic has kept stringing me along, saying "let's wait and see if it will heal"....then, 3 or 4 months later, I'd be back for a cleaning, and it still hadn't healed.  That happened like 3 or 4 times; FINALLY, they have me set up to see a periodonist on Friday.   Some of you will get a kick out of this:  the place decided to HEAL on its own last week!  So I guess in this case, their theory of "keep putting them off and maybe the problem will go away", has worked!  I'm keeping the appointment anyway.  Nothing to lose, right?

Hope everyone is having a nice summer!

LOVE, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Jeff G

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Re: Just checking in
« Reply #47 on: June 08, 2014, 04:12:31 PM »
Im ready to go to lunch again anytime you are Alan . I want to take Miss P to the this buffet , I think he may change his mind about all buffets being bad .

Offline J.R.E.

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Re: Just checking in
« Reply #48 on: June 08, 2014, 11:32:39 PM »
Hi gang

I had three lesions removed from my left lower leg by Electrodesiccation ("burned off") last Wednesday.

  the place decided to HEAL on its own last week!  So I guess in this case, their theory of "keep putting them off and maybe the problem will go away", has worked!  I'm keeping the appointment anyway.  Nothing to lose, right?

Hope everyone is having a nice summer!

LOVE, Alan


Did they give you any feedback on what these lesions were Alan ?  Or was it Actinic Keratosis.

It appears that most skin problems I've had through the years have always been from the waist up, and primarily on my left side.

It's always good to catch these things early.


Yes, Keep the appointment with the periodontist !! Do you wear partials ? Maybe some irritation, but yes get it checked anyway.


Summer is going just fine so far !!  I slathered the 110 sun screen on myself today,  :P     and we had our first swim in the Gulf for the year. Water was nice !!   8)


Take care Alan and have a great summer !!


Ray





Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 63 years young.

Offline AlanBama

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Re: Just checking in
« Reply #49 on: June 09, 2014, 04:36:48 PM »
Hey Ray!  glad you're having fun at the Gulf!  It's wonderful, isn't it?  I just love Gulf Beaches, especially on the Emerald Coast.

The lesions were basal cell carcinoma; I have quite a few more 'spots', one of which was biopsied and was the same thing, so I would assume all the spots are the same, since 4 have had definite diagnosis.

Not sure if this is from when I was a sun worshiper in the 80's, or a tanning bed regular in the 90's - 00's.  Anyway, no sun for me  :(   It's just as well really; I just can't take the sun anymore.   Don't enjoy it AT ALL.

I don't wear partials, but the gum "spot" is next to a crown....will find out what's up Friday.

HUGS !!!
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

 


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