Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
September 17, 2014, 09:55:54 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 639066
  • Total Topics: 48514
  • Online Today: 205
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: I have no answers for this  (Read 2310 times)

0 Members and 1 Guest are viewing this topic.

Offline aztecan

  • Member
  • Posts: 5,396
  • 29 years positive, 57 years a pain in the butt
I have no answers for this
« on: April 13, 2012, 12:11:59 AM »
Hey gang,

At the risk of sounding like a whiney old queen, something happened today to cause me to focus on something that has left me depressed and a bit concerned.

I was at a health food store, of all places. As I was checking out, the clerk said, " I hope you don't mind my asking, but  what is that lump on the back of your neck?"

Turns out he was trying to hawk some herbal "fix-it-all" that is supposed to dissolve tumors.

Rudeness aside, it did drive home the possibility that my hump, lumps and bumps may be getting larger.

I had thought I noticed the growth on the front of my neck, which resembles a large goiter, was getting bigger. I noticed it because the extra large shirts I was forced to buy because of the large neck are now too small.

I end up leaving the top two buttons open.

I saw several recent photos of myself last week and was mortified! I wanted to crawl into a dark corner and hide.

The lumps on the back of my head may also be growing.

Which brings me to the second thing that, after the clerk encounter, I was forced to think about.

My hump and goiterette feel like fibrous fat clumps to the touch.

But the lumps on the back of my head, located at the base of my skull, are hard, and feel like either very taught muscle or bone.

I have wondered for some time about this. They don't seem to be the same type of growth as the hump. So, if they are different, what is causing them?

Moreover, the lump on the right is larger than the lump on the left. 

I would let my hair grow out to cover it, but it is so fine, it would not help matters.

Maybe a wig, something like a mullet on steroids that would cover all this mess.

I know someone whose hump and neck got so big it started to cut off her breathing and was causing more than a little discomfort.

Maybe mine will get like that too. At least then I would have a fighting chance of getting the insurance company to pay for their removal - or, if the insurance company balks, they will cut off my breathing altogether.

Either way, at least there would be a solution.

HUGS,

Mark



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

Online Jeff G

  • Administrator
  • Member
  • Posts: 11,706
  • How am I doing Beren ?
Re: I have no answers for this
« Reply #1 on: April 13, 2012, 12:38:43 AM »
I have no answer for you but I can say I'm sorry that jerk made you feel that way . I can also honestly say that after meeting you I think you are a beautiful person . This is a fact . 

Offline leatherman

  • Member
  • Posts: 6,184
  • Google and HIV meds are Your Friends
Re: I have no answers for this
« Reply #2 on: April 13, 2012, 01:16:36 AM »
I can also honestly say that after meeting you I think you are a beautiful person . This is a fact .
I whole-heartily agree!

 :-* :-* :-* to you, Mark
leatherman (aka mIkIE)


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

Offline J.R.E.

  • Member
  • Posts: 7,150
  • Joined Dec-2003 Living positive, since 1985.
Re: I have no answers for this
« Reply #3 on: April 13, 2012, 08:00:51 AM »
Mark,


I wish I had some answers for you, but I don't. But Honestly, I would have layed that clerk out with a verbal assault. How freaking rude ! And then on top of it, to try to push some ( most likely ) untested product.

But I can understand your concerns.  Seems like it's time to have one of those heart to heart with your doctor, and discuss these concerns.  Their valid.

I've never had to deal with humps or bumps from the earlier medications,  But I do have one hell of a gut that I believe is troublesome.   :-X



Hang in there Mark ---Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg 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


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: I have no answers for this
« Reply #4 on: April 13, 2012, 09:28:51 AM »
Mark,




But I can understand your concerns.  Seems like it's time to have one of those heart to heart with your doctor, and discuss these concerns.  Their valid.

 
  I'm in total agreement here  Mark ;)

I've never had to deal with humps or bumps from the earlier medications,  But I do have one hell of a gut that I believe is troublesome.   :-X 

 Ray, same problem here, but, it's not lipo belly fat, it's all of the gas & bloating due to my GI-disease

"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,660
  • 31 Years Poz
Re: I have no answers for this
« Reply #5 on: April 13, 2012, 01:22:12 PM »
Hey Mark,

I almost cried reading your post, because you are one of the finest men I have ever met.  I know you understand what true beauty means, however I fully understand your concern over your physical issues.  I'm with Ray, you need to bring out the big guns and get doctor(s) to support ways to help you out, and to do it before something major happens.  While this is a vanity issue, more importantly it's a quality of life issue and I think you have every right to be concerned.

It's time for you to start advocating for yourself again.  You know you will have to fight fire with fire with the insurance company, so get some allies.

All my best,

Joe


Offline pozniceguy

  • Member
  • Posts: 1,177
  • Niceguy Dallas
Re: I have no answers for this
« Reply #6 on: April 13, 2012, 02:40:17 PM »
Have to  agree with Joe...you need  to put some "professional" pressure on the insurance company...a few  proper "medical necessity" notes  should  move things along  and probably a  little dispute over a denial of the  claim as well  but  DO IT  ..... dont let it get to the  ""strangulation"  phase... 

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,940
Re: I have no answers for this
« Reply #7 on: April 14, 2012, 05:24:26 AM »
Mark, you are one of the true gentlemen on this forum, and I would hate to see you let this go.  That guy in the store was a total jack ass, and should be slapped.

I agree to bring this up with your doctors, and keep going until you get satisfaction.  You advocate for others all the time (in your work), now do some advocating for yourself.  And find others who understand who can back you up.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Buckmark

  • Member
  • Posts: 1,526
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: I have no answers for this
« Reply #8 on: April 14, 2012, 11:45:57 AM »
Mark,

I don't think you are whining at all.  You have a legitimate problem.  And although the clerk's behavior was incredibly insensitive (I think he should have been reported to his manager), it does support your concerns.

As others have suggested here, maybe you can pressure your doctors and insurance company more.  Get a second opinion from another doctor.  Go through the (incredibly frustrating) appeals process with your insurance company. 

I'm so sorry (and frustrated) that you're having to go through this.

Hugs,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline bear60

  • Member
  • Posts: 4,104
Re: I have no answers for this
« Reply #9 on: April 14, 2012, 12:02:05 PM »
Hey Mark
I just had to chime in.  I agree with Betty and several others.  Get several opinions from your doctors.

Hugs
Joel
Poz Bear Type in Philadelphia

Offline OneTampa

  • Member
  • Posts: 2,195
  • "Butterflies are free."
Re: I have no answers for this
« Reply #10 on: April 14, 2012, 07:56:32 PM »
Hello Mark,

That callous clerk needed a Quick Quentin snap twirl reading.

I agree with others who posted here.  Now is the time to have a heart to sense
chat with your doctor and get things moving on addressing your concerns.

And please know that you possess beauty in mind, body and spirit.

((((((HUGS)))))
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline AlanBama

  • Member
  • Posts: 3,625
  • Alabama: the 'other' 3rd World Country!
Re: I have no answers for this
« Reply #11 on: April 18, 2012, 02:17:33 PM »
My dear Mark,

to me, you are and always will be BEAUTIFUL.   As for the rude clerk....dismiss that from your mind.   I do agree with the others here though, maybe it's time for your doctor to advocate on your behalf to your insurance company, stating that these lumps/humps are causing you PHYSICAL problems, and it is no longer just a 'vanity issue' (that always pisses me off anyway; it's like with our lipo-faces...it's a "vanity issue' to have it corrected; so I guess we should not be vain and just accept it? B.S.)  My dear friend Kevin who passed away a few years ago, had the same issue with his huge neck, and not being able to get any shirts that fit.   I hope you can get some help with this issue honey.   Do it for YOU, not for anyone else's eyes.

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 Theyer

  • Member
  • Posts: 2,509
  • Current ambition. Walk the Dog .
Re: I have no answers for this
« Reply #12 on: April 24, 2012, 02:41:53 PM »
Mark {hugs] I always found advocating for others enjoyable and was pleased with my outcomes, however when it came to myself I was hopeless , got myself all the help I could to deal with the bureaucracy and still do, although now I am iller its harder to get the help.

And by the way I have not met you and still find you top notch Gaygrey.
with love
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.