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Author Topic: Not feeling so good...  (Read 23311 times)

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Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Not feeling so good...
« on: November 10, 2014, 08:32:33 am »
Just got done sleeping 26 hours straight, missed a dose of S/O, pissed off at myself and now can't take for another 3 hours because I have to go get an ultrasound of the belly to get again for fluid in the gut. So I can't take meds without eating and I can't eat before the test. I just need this road I am traveling to get a tiny bit easier so I can function...

Feeling really down right now and trying to pull myself back up to a livable level.

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Not feeling so good...
« Reply #1 on: November 10, 2014, 01:10:43 pm »
MEL, I DIDNT TAKE MY MEDS FOR TWO DAYS BECAUSE THEY HAD SCREWED UP SHIPMENT, YOULL BE FINE MY Friend, just spend some one on one time with your creator , talk away, ask away,one thing about bad days is better ones come. 85% of stuff we get all worried about is always takin care of, the other all we can do is row the boat, and the rest we have know control over. put on some good tunes you like or ,breath in and out thru nose lying down [quietly]just counting 1 thru 10, just breath in 1 then out 2 then 3 in etc. then start over. just think of the numbers,, if your mind drifts off to something else don't worry just go back to the numbers and try to think of nothing else.. theres no wrong way to do it so don't get technical,, do it everyday ,[more in one day if you want,, it helps big time with anxiety and panic] great for night cause you'll dose off,, of course theres other ways like sitting etc. in a nice comfortable chair,, just keep it simple for now,, you'll get so your looking forward to it.   try that and we will go from there, if you cant breath thru just nose than use mouth, nose to me is better and slow your breathing down as you progress,, prayin for ya Mel  ''just'' Willie g  PS also do something kind for someone,anyone, it will help you more than it will help them

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Not feeling so good...
« Reply #2 on: November 10, 2014, 03:29:24 pm »
Thanks Willie, need to hear what you were saying, sometimes we get too caught up. Time to have some 1:1 talks and if that doesn't work have some more. Just feeling really overwhelmed right now with everything. It's so hard not to get in the dumps when I read all these posts from everyone about how wonderful they are all feeling, no or minimal side effects, blah blah. I am really, really happy for them but damn why do I feel like crap and have this this craziness happening in me? I just can't believe that I am the only person who is in treatment that feels horrible and It's not the treatment per say it's the disease that has been eating me alive for god knows how long. Does everyone really feel that good all the time? What's wrong with me?

As far as doing something nice for someone, well I try to do that every day. I haven't been getting out much so that limits me but still try to when I can.

May need to break out the Box that I learned about in Alanon many years ago, seems like it's time to turn some things over to my Higher Power again.

~Mel~

« Last Edit: November 10, 2014, 04:24:59 pm by BattleTheBeast »
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline zeena

  • Member
  • Posts: 114
Re: Not feeling so good...
« Reply #3 on: November 10, 2014, 05:47:00 pm »
Dear wonderful Battler,
                 These days, I essentially have what I feel is full on alzeimers. I cannot remember anything.I have just returned from my docs office to cut my work load to my abilities, which when stress induced is now ZERO.When I cant remember I dont even try to, its not there.I call people by their wrong names, and in the clutches of stress, stand there, staring out into space, which happened at work . I dont take lunches in order to make my quotas, i stuff (literally) a  sandwich into my mouth to take my meds,and keep on keeping on, by the way looking like hell which is not acceptable to me.Oh no dear Mel, my cognitive abilities are reduced significantly.In my personal life, the men in my life pick up the crumbs, but no one is at the steering wheel.At my wits end, and look forward to all this as the past. For me the ribaviran is a witch.I am only 125 pounds and I take 1000 a day.my doc wont reduce it/the only recourse i have is getting oxygen into my organs by running on the beach.and forgiving myself for everything, because i cant remember specificcs.  best wishes,  zeena

Offline zeena

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  • Posts: 114
Re: Not feeling so good...
« Reply #4 on: November 10, 2014, 05:51:50 pm »
i cant get the old format on my computer, is this the new format? I dont like it

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Not feeling so good...
« Reply #5 on: November 10, 2014, 08:20:37 pm »
It's not a new format on my computer Zeena. Anyone else seeing something new?

Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Not feeling so good...
« Reply #6 on: November 10, 2014, 08:28:31 pm »
I don't see a new format but heck it could be and I forgot what the old one was. Today it took me 10 full second to remember how to spell the word "weak" and yesterday for the life of me I couldn't find the word "organic" .

~Mel~

And Zeena, thank you for letting me know I am not alone....
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline trapper

  • Member
  • Posts: 56
Re: Not feeling so good...
« Reply #7 on: November 10, 2014, 09:28:00 pm »
Da Beast.   sorry you are not feeling so well.   I haven't had any deabilating problems from s/o treatment to speak of, a couple of low grade headaches, and a day when I was just bla.  I still have the problems from hcv and cirrhosis.  Fatigue is bad, mornings are pretty good,  afternoon is when fatigue sets in.  The heat bothers me real bad in the summer.  Dr said from cirrhosis and cirrhosis can cause a lot of problems, my eyes bother me sometimes, just a lot of things can be caused by cirrhosis.   I hope that things will go away or not be so bad.  I'm kinda of giving myself a year after cure for my liver to regenerate itself as much as it can and then see what.   I started jucing over a year ago when I got pretty sick and now vitamix vegies and fruit (organic).  over time gave me a lot more energy, and gives my liver a break. I start my 3rd week Wednesday and after 4th go in for blood test to see whats happening.   I hope things go well with you.  Later  trap

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Not feeling so good...
« Reply #8 on: November 10, 2014, 10:40:07 pm »
I hear you Trap, it's not the treatment, it's the cirrhosis kicking my butt. It's just so frustrating to me. Not used to being so physically out of it.

I think for me what's making this all so difficult is that in May I got very very sick. I went through the entire summer almost until August in misery, multiple tests, a biopsy, a few different specialists and then BINGO, one doctor is finally smart enough to run the right tests. Then I find out what's wrong, find the best specialist in the field I could, get an appointment with the top doctor in the practice and finally get in to see him in September by calling every day for a cancellation. So he says I need to get an MRI and an Ultrasound to prove I don't have cancer on top of everything else, I somehow push through the insurance approvals and get the results, go see him last week of Sept and get to start S/O on 10/11; which is all amazing but I never got to digest what's happening to me. I was so busy just trying to survive through it all and my only focus was Hep C and getting the new miracle medications. I basically ignored the Cirrhosis and thought if I can get rid of the virus I will be all better. So naive of me but hey I am human, you get sick, you take meds and you get better, right? so so wrong!

What I need to come to terms with is that I may get my miracle with the virus but my big problem and my symptoms and issues are all the cirrhosis. So somehow I need to get through the treatments, kill this virus and then pray that my liver starts to heal itself. I am not going to feel better until my cirrhosis is better.

So those that are on S/O, know that my issues are not because of it. Next time I flip out I will put in in living with Hep C but I hope that in the next few months it will be "the aftermath of HepC and how to heal"

Do you have an good juice recipes? I think I really need some...

BTW, got a quick verbal from the Nurse today and my 4 Week VL is 15,  so while it is going down, from the 20 it was a 2 weeks it's still there at 4 weeks, a little lower but still there. I will get a copy of the full reports when I go int Wednesday.


~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Not feeling so good...
« Reply #9 on: November 11, 2014, 09:21:54 am »
Mel, thank you for saying this: ::)
Quote
it's not the treatment, it's the cirrhosis kicking my butt.
It is so tempting to blame the meds for side effects, but many are on the meds because of cirrhosis. Cirrhosis is a serious medical condition that usually continues even with successful treatment outcomes.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline DesertGuy

  • Member
  • Posts: 134
Re: Not feeling so good...
« Reply #10 on: November 11, 2014, 09:28:40 am »
I need to know MORE about if it's the side effects or the cirrhosis that is making me go nuts---so I can prepare for the next few years.--

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Not feeling so good...
« Reply #11 on: November 11, 2014, 09:51:00 am »
Hey Desert Guy,

I need to know MORE about if it's the side effects or the cirrhosis that is making me go nuts---so I can prepare for the next few years.--

Well hopefully you will be the Hep C virus and then the liver can start to repair itself. That's the one good thing, we are dealing with an organ that can repair. Honestly I am still trying to figure it all out myself but I felt like crap before I started the S/0 and I still feel like crap 4-1/2 weeks in. Difference is a headache once in a while now, that a boatload of water helps and acid reflux unlike any I have every had but other than that I am just the same miserable Biotch I have been for the past few months since the cirrhosis brought me to my knees.

I hope you feel better than I do and I hope you are cured and that your liver can start to heal. Once I get through this I am going to start looking into things to help the liver but right now I just want to get through today.

I am concerned that I am only approved for 12 weeks of S/O but the new formulary says I should be on 24. I am going to bring it up to the doctor tomorrow and ask. I think you might want to do the same since you are also F4.

Here's the press release about it: http://www.prnewswire.com/news-releases/olysio-simeprevir-gains-additional-fda-approval-as-once-daily-all-oral-interferon--and-ribavirin-free-treatment-option-in-combination-with-sofosbuvir-for-adults-with-genotype-1-chronic-hepatitis-c-infection-281674661.html

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline bepper

  • Member
  • Posts: 30
Re: Not feeling so good...
« Reply #12 on: November 11, 2014, 12:17:52 pm »
Oh, I'm not feeling so great Mel. I have good days, and not so good days and a couple real crappy days. I imagine we are all unique individuals and the same drugs have different side effects on each of us. For me I have noticed stress makes everything worse. I've also noticed what I eat affects me greatly. I haven't filled my cabinets and fridge with a completely healthy liver/diabetic diet yet, but I am working on it, item by item. I have grandkids that come by, so I have some things here they requested, but when I notice how crappy they make me feel, I won't be buying some requested items unless I can stay out of it. I am weak in the food area.

When I told my neurologist yes, I am claustrophobic in the MRI machine, but hubby said it's all in my head. The Dr said, "well, in a way, he is right, but mind is all." That statement has stuck with me for many years.

I am glad you know of Ala-non. I have ref so many friends there over the years and have been so blessed to have found that program for use in my own life many years ago. I thought then, and still think everyone could use a little Ala-non. The little slogans have helped me when I thought I couldn't put one foot in front of the other, but I did, with their help and lived to tell my story, and forget a lot of it now. Right now I remember "If nothing changes, nothing changes" If we don't take the meds, well, nothing changes and we stay sick. And "Don't compare or you will always be disappointed" and as always "One Day At A Time" and the serenity prayer.
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference"
That plaque hangs next to my kitchen sink, right above my meds. A dear friend gave me that for Christmas a few years ago. Guess she knew before I did that I was going to need it, right where it is!

Sending you a big hug and hope the days will get easier.

bepper


 
Dx: 1985 non a-non b Hep
Dx: over next 20 yrs "your body has cleared the virus on it's own, never worry again"

July 2014 Dx: Hep C GT3
ALANINE AMINOTRANSFE   0 - 33 U/L   72   H
ASPARTATE AMINOTRANS   0 - 32 U/L   88   H
HCV QUANTITATIVE viral load   5678036

Started Sol/Rib Oct 9, 2014
UD @ week 4 of TX
Completed tx 3/20/15

Hubby: Successfully tx in 2005
June 2014 Re-dx GT3
Cirrhosis of liver without mention of alcohol
Hepatocellular carcinoma

Liver transplant 3/2015

New life for both!?

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Not feeling so good...
« Reply #13 on: November 11, 2014, 01:10:48 pm »
Thanks Bepper, hope your today is a good day. Mines one of exhaustion trying to work from home after another night of no sleep. Feast or Famine and I and so darn exhausted this very minute. Trying to listen Tia conference training session and head is nodding off while same time my skin is itching insanely.

Thanks so much for sharing you don't feel perfect, being surrounded by perfect doesn't work well for me in so many different ways. I was feeling like I was in Stepford when I feel like I'm in Valley of the Dolls without the dolls! 

And Bepper is today is crappy I hope tomorrow isn't.

~MEL~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline trapper

  • Member
  • Posts: 56
Re: Not feeling so good...
« Reply #14 on: November 11, 2014, 02:29:37 pm »
mel.  don't really have any receipies for vita mixer.  I just go to Costco and get frozen organic fruits and vegies.  I just mix things together and hopefully it will taste decent.  I put some kefer (probiotic)with it in morning. to help with bacteria in gut. I also get fresh fruits and vegies.  I had problems with digestion and acid before and vitamixing sure does help that.  I'll also eat a piece of chicken or fish or elk for protein.  Seems to work for me anyway.  I don't have variances or  h20 retention so my cirrhosis may not be as bad as yours.  I'm probably operating at a third of the energy as I use to.  I hope it comes back.  so far so good.   later  trap

Offline zeena

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  • Posts: 114
Re: Not feeling so good...
« Reply #15 on: November 11, 2014, 04:43:27 pm »
the mind, that crazy organ. does anyone else feel crazy?i dont feel grounded, i kind of think if i let everything bounce off of me, it will be for the best. i cant even care. i dont have the grounding i once had. perhaps my job is pissed at me for taking time off, but i cant do a full schedule now. i cant. and i am honest about my abilities.sometimes i understand stuff i didnt for years.Not from a personal space, just it is ... I use to take everything so personally, i still do kind of, but now know that people are fallible.thanks for letting me write this nonsense  on this forum. i kind of love you guys.                                                  dazed and confused  also throw in  almost 6 months of riba  at 1000 and sol.    z

Offline zeena

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Re: Not feeling so good...
« Reply #16 on: November 11, 2014, 04:45:57 pm »
is anyone on an anti anxiety  med or anti depressent that doesnt make you nuts or tired?

Offline zeena

  • Member
  • Posts: 114
Re: Not feeling so good...
« Reply #17 on: November 11, 2014, 05:11:33 pm »
nah, i*m not going to take anything. just put on lipstick, a smile and keep on doing what i do, the best i can.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Not feeling so good...
« Reply #18 on: November 12, 2014, 11:57:41 am »
Hey Zeena, just sending you a hug, I think we both need one...

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline zeena

  • Member
  • Posts: 114
Re: Not feeling so good...
« Reply #19 on: November 12, 2014, 08:05:35 pm »
thanks mel !! went to work today, sat down and ate lunch, had a good day of sales and i did well over all. knowing i have a little break these last weeks is a very healthy way to finish my meds. DECREASE STRESS!!!!

Offline BattleTheBeast

  • Member
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  • Female, 57 - SVR12 as of 7/23/15!!
Re: Not feeling so good...
« Reply #20 on: November 12, 2014, 08:17:02 pm »
So happy you had a good day today Zeena! Maybe you can make it 2 in a row and have one tomorrow as well! Keep on keeping on, that's what we do :)


M
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Not feeling so good...
« Reply #21 on: November 12, 2014, 09:26:05 pm »
Zeena, did you say you take 1000 mg riba and only weigh 125 lbs?  I weigh 128 lbs and take 800 mg a day.  I was told that dose was determined by weight.  How many weeks are you taking sov and riba for?

Offline zeena

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Re: Not feeling so good...
« Reply #22 on: November 12, 2014, 09:31:46 pm »
24 weeksi i lost 15 lbs while i have been on it.my labs are good its the brain thats baking.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Not feeling so good...
« Reply #23 on: November 12, 2014, 10:05:57 pm »
I get the boohoos very easily and forgetful a lot more than before.  I felt drugged and spacey on and off, but, in just the last few days is has gotten less and less.  I am on 12 weeks of sov and riba .  Side effects began after two weeks (skin, itching and a lot of little things) and peaked for about 4 weeks, then lessened for a couple of weeks and started up again and now they are dwindling as I am reaching the end of the journey.  Not sure if my mind is affecting it or it is the meds - cannot tell anymore - lol   See what it does,  I am not sure haha. At least the skin issues have subsided.  However, I have noticed that I look pale and tired.

Offline zeena

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Re: Not feeling so good...
« Reply #24 on: November 13, 2014, 08:48:43 am »
hey tess, i am not so sad as i am naked. in business there is so much side speak, i can barely get baby speak.stress absolutely shuts me down.  and i can not shut down in the middle of a sale, or talking to mgmt. i also stop drinking water when stressed, and breathe poorly.2 things that rule my health now. drinking water and exercise eliminate the artheritic pain and dehydration, .bottom line we are on strong meds. respect yourself accordingly.  i feel  pushy and aggressive in this thread, i hope i am not.stay strong!!!

Offline Tess1971

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  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Not feeling so good...
« Reply #25 on: November 13, 2014, 03:11:31 pm »
Hey Zeena,You are strong as I could have not done this treatment when I was working.  I had an extremely stressful type job and the type of people I worked with would have thrown wrenches in it continually.  I would have worked longer if it was not for the stress, but, I am glad I stuck it out long enough to be able to retire from there. 
This is the end of week 12 for me and I just got the results from my first viral load; UNDETECTABLE !  WOW, after four decades and having a 3485370 viral load I am impressed with the results.  Now it will not be checked again until Feb 2015.  I am elated!!  You will be too when your time comes around, trust me. I feel better already just knowing the results.
 

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Not feeling so good...
« Reply #26 on: November 13, 2014, 03:40:29 pm »
CONGRATULATIONS TESS!

I am so very happy your have beaten the beast so far so good! Another one for the good guys and i will pray it sticks!

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline zeena

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  • Posts: 114
Re: Not feeling so good...
« Reply #27 on: November 13, 2014, 05:48:00 pm »
tears of joy!!!a new future to all of us!! thanks for the kind words!!!!great success for your your new retirement!!

Offline willie g

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  • geno 1 25million etc. s/o for treatment
Re: Not feeling so good...
« Reply #28 on: November 14, 2014, 10:29:50 am »
great news TESS!!  hang in there ZENNA,,, not everyones the same ZENNA and your finding out what makes you tick better,  so listen to your body and keep on truckin,,,, and  you are by no means PUSHY or aggressive,, keep on posting,, keep on knowing everyone here has your back FAITH HOPE LOVE  YAHOO  love that purple MEL!!! and TRAPPER  keep on trappin!  ''just'' willie g

Offline zeena

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Re: Not feeling so good...
« Reply #29 on: November 14, 2014, 06:25:04 pm »
hey beast,
       i will take your hug and raise you a laugh, haha.

 


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