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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: aztecan on April 13, 2012, 12:11:59 am

Title: I have no answers for this
Post by: aztecan 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



Title: Re: I have no answers for this
Post by: Jeff G 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 . 
Title: Re: I have no answers for this
Post by: leatherman 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
Title: Re: I have no answers for this
Post by: J.R.E. 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
Title: Re: I have no answers for this
Post by: denb45 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

Title: Re: I have no answers for this
Post by: Joe K 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

Title: Re: I have no answers for this
Post by: pozniceguy 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
Title: Re: I have no answers for this
Post by: BT65 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.
Title: Re: I have no answers for this
Post by: Buckmark 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
Title: Re: I have no answers for this
Post by: bear60 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
Title: Re: I have no answers for this
Post by: OneTampa 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)))))
Title: Re: I have no answers for this
Post by: AlanBama 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  :-*
Title: Re: I have no answers for this
Post by: Theyer 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