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Author Topic: Back in the Game  (Read 1099 times)

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Offline JR Gabbard

  • Member
  • Posts: 250
  • Union Jacks
Back in the Game
« on: October 07, 2010, 04:56:05 PM »
Hi all!

I'm back online after a pretty extended absence.  And happy I am  to be back!  Here's the story:

I've had HIV-related wasting for about the last 10 years, since about 3 years after I first got sick and went on treatment.  That's when I first noticed a really serious energy problem.  I went through wild weight swings, from 155 when I was really sick to 220 when I was plump.  What was happening was I was steadily losing muscle, and replacing it with fat.  When I tried to change things by working out, I would lose the fat but not gain any muscle mass.  Fat is a poor energy source, hence the profound fatigue I was experiencing.  At the worst point my day involved getting out of bed and moving to the chair in front of my computer, then resting up for half an hour from the 10 foot  trip.  Bathroom trips involved a rest break in the john, and another when I got back to the chair.  Food was a huge challenge.  It had to be something that didn't involve me being on my feet for more than a minute or two.  Often I just didn't eat, which didn't help matters.  I had to rest up for a day before the two-block trip to the food bank.  By rest up I mean remaining motionless, just breathing.  It wasn't fun.  Actually it was pretty scary.

We tried to treat it with testosterone, which gave me a little energy boost at first, but still didn't help with building muscle.  The problem was that I didn't look like I had wasting.  It never showed in my face, and I was maintaining an acceptable body weight.  Still, I could put my hands around the thickest part of my thigh, and touch the thumbs and middle fingers.

Another part of the problem is I think that they attributed my fatigue to depression.  And yes, I was depressed, but that was because of the fatigue.  I felt utterly useless, and knew that this was just a natural part of the process of HIV infection, so there was no out, and it would only get worse.  Therapy would have been an option, but the point of therapy would have been to bring me to the point where I accept what was happening.  I never got to the point of acceptance, but I did find some peace in distracting myself through learning to live in the moment.  That's another story.

I heard about a treatment called Serostim from a client in 2002.  He had really great results building muscle after taking it.  It showed--he was a total hunk.  He also said it was really hard to get.  At that point in time, I was still coping pretty well (sort of--I only had energy to work part-time) so I didn't think I would be a candidate for it.  And things got steadily worse.  My MDs had all the medical facts in front of them--weight loss, fatigue, no results from testosterone--and nobody as much as suggested Serostim.  Finally, desperate, I pleaded with my MD to do something, and specifically asked about Serostim.  He said he didn't think he could get it for me, and that anyway I was clinically well.

So I bucked up the courage and switched clinics to UCSF.  They assigned me an NP.  I'd been seen at that clinic a few times in the past, so she had a record of my weight.  So when she saw that I'd lost 40 lbs in 2 years her eyes bugged out and one of the first words out of her mouth was Serostim.  It was funny, because I came armed with information about every possible treatment but Serostim, still thinking I would never get it.  I was wrong.  She got it for me.  And it works.

Serostim is recombinant human growth hormone.  There is a daily injection, similar to a daily insulin injection that someone with diabetes might take.  You have to mix it yourself, because the hGH is too fragile to come pre-mixed.  You also have to get comfortable with sticking a needle into your own body, unless you can find someone to do it for you.  I got used to it, and now I can do it without even feeling the needle.

I started feeling positive results within about a week.  I could feel that I was moving a little more muscle around, and my energy levels increased a lot.  I started working out with light weights, and started building a little muscle.  The amazing part was that my trunk fat just melted.  My gut is almost gone, there is the hint of a six-pack, and the love handles are now just a memory and I have that lateral cut again.  Internally, it is stimulating muscle growth, strengthening my bone mass, and potentially regenerating my immune system (if only just a little).  My mental state also improved, since I now have an acceptable (and workable) energy level.  Normally, you climb out of the black hole.  My black hole just disappeared.

In order for Serostim to work, though, you have to go to the gym.  I'm not all that fond of going to the gym.  I prefer having weights at home and being a little more leisurely about working out, but that ain't gonna work right now.  So I got a gym membership.  Now I have to develop the habit.  The upside, I suppose, is that I will be in really great shape soon.

I told my NP that they had been keeping me alive for years, but that she gave me my life back.  I really believe that.  Now I'm putting my life back together, but I'm trying to incorporate the lessons I've learned on my trip through neverland.  What I learned is that "now" is the only moment that matters, and you should be happy in it.  So whatever I'm doing, it should be something that makes me happy doing it.  Being a courtroom lawyer was cool, and at times exhilarating.  But it was also stressful and combative, and pretty much the opposite of happiness.  So I'm refocusing my practice toward being a consultant on HIV-related legal issues, which I've done significant research into, but not representing any clients.  I've also come to realize that I won't be happy unless I'm working with my hands, not just my brain.  The only hand work in law practice is typing (or maybe gesturing while speaking) but that's not what I had in mind.  So I'm looking to return to what I was doing before law school--tending bar.  I had a job interview at a place I would love to work at just the other day.  I think it went well, and I'm just waiting to hear back.  Being back behind a bar, and having a small practice on the side (or vice versa) will make me very happy, I think.

So, from wishing I didn't have to wake up the next day, to the top of the world in six short months.  If there's a lesson to take from this, and I'm not saying there is, it might be to never give up.  Even when you think you've already given up and it's already over, don't give up.  Your next moment might be significantly better than this one.  You don't know.

That's more than enough for now.  Except that I want to mention the new forum on Benefits issues (SSDI, SSI, Medicare etc.).  Tim has asked me to moderate it and to be the "expert" answering your questions.  So if you have any benefits related questions please post them there and I will try to give you an answer.

Take care everyone, and it's great to be back!
It goes like this
The fourth, the fifth,
The minor fall, the major lift,
The baffled king composing Hallelujah!

L. Cohen

Offline Matty the Damned

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  • Posts: 12,198
  • Ninja Please
Re: Back in the Game
« Reply #1 on: October 07, 2010, 04:58:12 PM »
Welcome back. :)

MtD

Offline JR Gabbard

  • Member
  • Posts: 250
  • Union Jacks
Re: Back in the Game
« Reply #2 on: October 07, 2010, 09:06:37 PM »
Thanks Matty!  ;)

Everyone:  Forgot to mention also that we switched my username from SweetPrince to my real name, since I'm dishing out advice.  Sorry for the omission.

JR
It goes like this
The fourth, the fifth,
The minor fall, the major lift,
The baffled king composing Hallelujah!

L. Cohen

Offline HARLEY_B

  • Member
  • Posts: 67
Re: Back in the Game
« Reply #3 on: October 14, 2010, 10:07:44 AM »
 Congrats JR and welcome back. You posted some info for me in the benefits forum and I greatly appreciate it. I'm glad to hear that things are working out for you.

                                                                                                Tim

Offline bmancanfly

  • Member
  • Posts: 554
  • Medicare For All !
Re: Back in the Game
« Reply #4 on: October 14, 2010, 10:54:42 AM »
Very inspiring story.  Glad you're feeling so much better.

Good luck as the new moderator.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline anniebc

  • Member
  • Posts: 5,937
  • AM member since 2003
Re: Back in the Game
« Reply #5 on: October 14, 2010, 04:02:05 PM »
I'm a bit late to the party..but welcome back JR, hope you still have those flowing locks.. ;).

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

Offline JR Gabbard

  • Member
  • Posts: 250
  • Union Jacks
Re: Back in the Game
« Reply #6 on: October 14, 2010, 08:25:40 PM »
I'm a bit late to the party..but welcome back JR, hope you still have those flowing locks.. ;).

Hugs
Jan :-*

Ahhhh, actually I went a bit wild recently, and I'm now sporting a mohawk.  What can I say--it was the Folsom St. Fair.

No pix yet; it's been less than a month.

xxoo
JR
It goes like this
The fourth, the fifth,
The minor fall, the major lift,
The baffled king composing Hallelujah!

L. Cohen

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Back in the Game
« Reply #7 on: October 14, 2010, 08:42:47 PM »
Welcome back! A great story, thanks for sharing it. Best of luck with your great come back!
Positive since 1985

 


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