Author Topic: Still kickin' and powerin' through the problems! (Read 57712 times)

slats1056 · « **on:** March 21, 2016, 10:50:09 pm »

Howdy to All in Heplandia!

It is so great to see all the good news of the SVRs and undetecteds as well as the ever increasing results of new treatments coming out day by day! Been skulking and lurking lately. Still feeling pretty shitty as I approach SVR24 labs next week. Headaches have been coming back although not the Migraines I was having during Tx. thank goodness. Lots of trips to the Chiropractor/Massage Therapist has gotten My back and neck lined out pretty good the last month. Still having a lot of joint pain from My lower back to My feet as well as arms and hands. The Drys. and Myself have opted not to treat the problem Pharmacological. Been trying stretching, walking , Advil , hot showers , ETC.ETC, for relief. Quite a bit of fatigue to boot. However, I have been sleeping better and longer than I have in Years when the joint pain doesn't wake Me up!
Have been getting blood and urinalysis regularly to try and pin point the culprit to no avail. EOT24 is tomorrow I believe, labs will be in a week or two as well as full blood work up for the G.I. Doc. Then another round for the Internist in May. The fatigue has gotten bad this past month , to the point of having an effect on My work and home life. Everybody says " You look fine, what is the problem?" I ask them if they would like to trade places. Same response , Nope! Still have a positive outlook and attitude about the whole thing, Just biding the time until the BS passes. Then , look out world!!!!! Been working on the thought of a road trip like in the god old days to do as I like! Less the imbibing of substances and beverages that I partook of back then of course. Time to shed some old projects and rethink future plans.

Again , I am happy to see all the progress we have made and the New Tx'ers keeping us up to date on their trials as well! Let us keep up the good work and support that we give each other come Hell or High water. Everybody keep their chin up and keep kickin' Dragon ass from here to Kingdom Come!

KimInTheForest · « **Reply #1 on:** March 21, 2016, 11:14:20 pm »

Thanks for the update, Tommy. I have been wondering how you were doing. It took me a long time post-treatment before I felt okay. really about 6 months. And then 4 weeks later I was back in the toilet again. I had gotten super-stressed and sleep-deprived from family crises, and a cascade of what appear to be auto-immune problems reasserted themselves. I fell back into my whole battery of post-treatment problems: fever, sweats, swollen lymph nodes everywhere, tremendous fatigue. I actually felt I had somehow plunged right back into the ribavirin anemia, which made no sense 7 months post-tx. But When I had my blood work done, sure enough - my hemoglobin, and red blood cells had fallen dramatically below normal, and my platelets and white blood cells had joined them.

It's the pits, but by very carefully managing my stress levels and finding ways to get to sleep at night (Gravol is my best friend for that), I have managed to pull myself out of that after just 3 weeks. The only lesson I can draw from this is that my post-treatment body is hyper-reactive and hyper-sensitive. And I just have to be very careful with it until it normalizes, which I believe it will eventually do.

Would love to be sitting on a beach or a little cabin in the woods with a pen and paper for my writing and nothing I need to do. I think if I could live like that for long enough, I would be fine...

Hang in there and keep us laughing, Tommy!

kim

slats1056 · « **Reply #2 on:** March 21, 2016, 11:26:38 pm »

Thanx Kim, Good to hear from You. I'm a little behind on replies and catching up on posts. Yeah the stress is a real bugger lately. Been trying to manage that, Lots of crap at work and in the home front, as well as computer problems. Been a little hard to put on the jesters hat here lately. All the non-comittal answers and shoulder shrugging pertaining to My labs and problems have been pissing Me off big time, but I patiently wait for it to pass. Hope You are feeling better.
The cabin on the Northern edge of the Sonoran Desert in the Balcones Escarpment is calling Me. But, to no avail! The funds elude Me. Soon though I shal make the trip!

Tommy

KimInTheForest · « **Reply #3 on:** March 21, 2016, 11:32:25 pm »

Quote from: slats1056 on March 21, 2016, 11:26:38 pm

The cabin on the Northern edge of the Sonoran Desert in the Balcones Escarpment is calling Me. But, to no avail! The funds elude Me. Soon though I shal make the trip!

Wow! I think that cabin is just what you need right now. Sounds idyllic! That's certainly what I am looking for - not that I could leave Nanaimo right now even if I had such a cabin waiting for me (what with problems surrounding care of my elderly mom). But that is the plan and hope. And a.s.a.p.

kim

Philadelphia · « **Reply #4 on:** March 22, 2016, 05:18:55 am »

It's always good to hear from you Tommy, no matter what. Here's hoping things improve soon for you. Be kind to yourself.

slats1056 · « **Reply #5 on:** March 22, 2016, 10:14:00 am »

Hey Philly Girl, How is Your arm coming along? Hope You are doing good as well! All the great news and new treatment results have been mighty uplifting to Me. Bright rays of sunshine cutting through the BS darkness for sure.

BillT · « **Reply #6 on:** March 22, 2016, 12:59:52 pm »

Hi Tommy,
Glad to hear you're still alive.

Sorry you're not doing better but hopefully it won't last much longer.I can definitely relate to the back problems.I've been living with that since I broke it in the Army.I've got a good feeling for you about the SVR24.Good luck with it.I get my 12 week done on the 1st and I called about having one done at 24 weeks.They just called back and told me no problem.Throwing up a prayer for all of us for the tests to come out like we want them to.Cheers

beto · « **Reply #7 on:** March 22, 2016, 01:52:13 pm »

Tommy

Seems like a lot of folks are experiencing the EOT issues. Funny, one day I will feel like an old man. Aches and pains in joints I didn't think were joints...then after a few days of that I am feeling pretty darn good. My iron levels suddenly shot up for no reason out of nowhere. Good moods followed by swings the other way. A week of anxiety whereby mole hills become mountains...then a week of few cares. One Monday comes along as a horror movie...next one just another Monday (if a manic one at that). I think there is very little question that the healing period will be a lot longer than any of us thought. The rest of the world does not have time for us old heppers and few can come close to relating what we have experienced for decades and especially now after TX. Your tx was a shit storm and of course EOT an equal Bear. Sorry for that dude. I like your chances of feeling better bit by bit and gaining momentum very soon. Enjoy those good days when they come...and nobody needs to tell you what to do with the MF days...you've been to that rodeo more than your share. Peace out Tommy...

slats1056 · « **Reply #8 on:** March 22, 2016, 02:26:09 pm »

Thanx Bill, Judging by Your signature info., You have it in the bag for SVR12. Good luck with it and more power to You Big Guy!! Here is to Your good health and smooth path!

slats1056 · « **Reply #9 on:** March 22, 2016, 04:18:20 pm »

Beto, I kinda get the feeling that some of it is a Karma thing, too! Whats that they say, "Paybacks are a Bitch" . It looks like mine are in spades now that My chit has been called due! The old bean has been all over the place going 90 MPH from thought to thought. Not a brain fog, just the inability to focus on the task at hand. It has been affecting and pervading every corner of My life lately. But I must admit that I do feel better overall when looking at the big picture! Lot of people got in this shape by no fault of their own, and yet I made all of the wrong choices and brought this on Myself! Ironic, ain't it? All of My labs have been coming back good and in range mostly. Everybody just shrugs their shoulders or says "We don't know"! Let's do some more tests! FRUSTRATING to say the least. The rodeo part is fitting. Feels like I have been rode hard and put up wet! Stomped by the bull.
Hope Your are doing good and waiting on the SVR24 results Brother!

beto · « **Reply #10 on:** March 22, 2016, 04:45:27 pm »

more paying the piper than karma. Tommy, have they checked you for iron overload?It is so common in 50 plus men with liver disease history. Ironically, the symptoms of overload are similar to anemia. Anyway I'm sure they have...if not, ask for a ferratin, test and or a full iron panel.

slats1056 · « **Reply #11 on:** March 22, 2016, 04:56:44 pm »

Will do , thanx for the heads up!

BillT · « **Reply #12 on:** March 22, 2016, 08:28:13 pm »

If I'm depending on Karma I'm a lost cause Tommy.

It's not easy for me at this point but I'm trying to think I'm good thoughts.It's a hard row until I get the hard evidence,there's no way I'm giving the dragon the satisfaction of the upper hand/paw/claw.We're going to win this and even the one's that have relapsed have so much more hope than we did 5,even 10 years ago.These dragons are going to lose.Maybe not today but their extinction is coming fast according to the gypsy woman reading my tea leaves.

beto · « **Reply #13 on:** March 22, 2016, 08:54:47 pm »

bravo bill!!

coastal girl · « **Reply #14 on:** March 23, 2016, 02:03:47 pm »

I gave a lot of thought before posting this. Most of my post are of my choices of complimentary medicine which I understand many disagree with but I feel that some of the help I am receiving may help so I will post anyway

I am in no way trying to recruit people to my way of thinking, just sharing.
I had much fatigue which seems to be common with many of us. My doctor had no suggestions. I followed up with my NP who did an advanced Adrenal hormonal test which showed my adrenals running at about 23%.
Here are a couple of Pub Med article that back up this theory
http://www.ncbi.nlm.nih.gov/pubmed/26668746
http://www.ncbi.nlm.nih.gov/pubmed/23382623
hope they come through properly and maybe it will help somebody

slats1056 · « **Reply #15 on:** March 26, 2016, 10:57:19 pm »

Well apparently the Drs. office was closed Friday and no one knew about it until the answering service called back today.So I have to wait until Monday for My Lab orders.
Took My frustrations out on a huge ginger plant in the back yard with a machete for a couple of hours to vent. Might have over done it a little , but I feel calmer now. Been needing to trim it for a while. Less anxiety that is for sure! Brain seems to be misfiring a little and can't concentrate. Not brain fog , can't put My finger on it. Been wanting to get in some reading but lack of concentration makes it difficult. I have several interesting books to catch up on. Don't seem to have a problem with short stuff or magazine articles so that helps.
Sure hope I get back to My old ABNORMAL self soon. It helps reading all the good news here on the forums and seeing old friends pop up with latest and greatest up dates! Trying to stay upbeat and positive gets hard at times. You guys have no idea how much it helps reading Your posts. I always try to stay up to date on posts as I lurk and skulk around even though I don't always reply!

HERE IS TO UNDETECTED AND SVR TO ALL OF HEPLANDIA WHERE EVER YOU MAY BE AND NO MATTER YOUR COURSE OF TREATMENT. DOWN WITH THE DRAGON AND UP WITH OUR CONTINUED IMPROVED HEALTH AND THE FUTURE!

Philadelphia · « **Reply #16 on:** March 26, 2016, 11:44:43 pm »

Being in a holding pattern myself Tommy, I wonder how much of our of focus is our minds wandering subconsciously to what we see as The Most Important Issue Out There - namely "are we clear?".

I've found myself skipping willy-nilly from one task to another with no commitment to any of them really. I'm quite distracted. I have four or five unfinished jobs out in the yard, to wit pruning the grape vines and dead heading the roses and picking up another 5 wheelbarrow loads of horse manure. I've managed to hose down the back verandah and move some pot plants around.

Maybe that's why you're lacking concentration. Just a thought.

slats1056 · « **Reply #17 on:** March 27, 2016, 12:05:51 am »

Good point Philly. Been making myself get up off the couch and do something no matter how small. Pick a task , get started , and see it to fruition. It not only gets Me out , but I get some exercise to boot. Keeps the old bean busy also. My mind says not to worry but ,My body seems to contradict it. The thought/worry of relapse is always in the back of My mind. It doesn't help that the medical community keeps shrugging their shoulders and have no answers as to the maladies linger on. I refuse to let that keep Me down though. Sooner or later something has got to give. To young to give up and to broke to retire! LOL! It is what it is and I will make the best of it no matter what! Never have been a quitter! Tell Me it can't be done and I will just try harder!
Hope You enjoyed Your vacation jaunt and the arm is healing nicely! The weather has been extremely nice here for working outside. Hope it is down under too!

Philadelphia · « **Reply #18 on:** March 27, 2016, 12:18:41 am »

Weather here is still pretty hot! It's 86f here and it's meant to be Autumn. Arm healing okay (was a bit of a worry early on as it wasn't knitting, but it appears to be going okay now) and i enjoyed my holiday so much I'm thinking of heading to Iceland next!

Keep the faith, you will get better.

slats1056 · « **Reply #19 on:** March 27, 2016, 12:26:54 am »

Good to hear. Iceland? Really? I think 86F is a rarity there. I like the cold weather as long as it isn't raining! Sure am glad to see Cal and DM back posting. Hope You are feeling well and all is good in Your world! Signing off from Texas. Good nite and sweet dreams of SVR!

Flaco · « **Reply #20 on:** March 27, 2016, 09:40:15 am »

Quote from: slats1056 on March 21, 2016, 11:26:38 pm

The cabin on the Northern edge of the Sonoran Desert in the Balcones Escarpment is calling Me. But, to no avail! The funds elude Me. Soon though I shal make the trip!

Tommy

Oh man! Tommy, you gotta do it! I'd sure like to spend a month or so in the desert.
I live on the NW edge of the escarpment, but can't picture where it intersects the Sonoran Desert. Oh wait - it must be somewhere south of San Antonio, Carrizo Springs or somethin'. Whatever - sounds great! It's getting a bit crowded and noisy here on the "preferred" side of the I-35/Escarpment corridor. A delivery guy once told me it's so quiet here you could hear a mouse sh** on a cotton ball.

Not any more

slats1056 · « **Reply #21 on:** March 27, 2016, 10:56:01 pm »

Flaco, Correction! Actually should have read the Chihuahuan Desert. West of Del Rio. Not far from Amistad Reservoir close to the border. Peaceful. Lots of stars at night. Beautiful place to recharge the old batteries.

KimInTheForest · « **Reply #22 on:** March 28, 2016, 12:03:24 am »

Quote from: slats1056 on March 27, 2016, 10:56:01 pm

Flaco, Correction! Actually should have read the Chihuahuan Desert. West of Del Rio. Not far from Amistad Reservoir close to the border. Peaceful. Lots of stars at night. Beautiful place to recharge the old batteries.

Can we all party there after we party at Bree's in Hawaii? Or would all our partying mar the peace and tranquility of the starry sky...?

kim

Flaco · « **Reply #23 on:** March 28, 2016, 09:19:34 am »

Heh heh Kim

Yeah it is pretty out there; Slats knows how to pick 'em.

I grew up in San Antonio, and any time someone would suggest a border run, I'd throw in my vote for Acuña, across the river from Del Rio, instead of Nuevo Laredo, where everyone usually went. I just always enjoyed the drive and the scenery out that way a lot more. I think Acuña's nicer than NL too.

If I find my place to stay for a month out in the Marfa/Ft. Davis/Alpine (Big Bend) area (I won't, but it's a nice dream), I'll stop by at the party on my way out there.

KimInTheForest · « **Reply #24 on:** March 28, 2016, 02:54:58 pm »

Sounds like beautiful country Flaco & Tommy! I long to go somewhere like that right now... Have had a long-standing plan to get myself another Westy and hit the road. Had one some years backed, loved living/sleeping in it... but very expensive vehicle to own and operate, so we shall see.

kim

Flaco · « **Reply #25 on:** March 28, 2016, 06:23:13 pm »

Westy... Westfalia? I never knew there were modern versions. I'm looking at them on the interwebs and I can see how they might be pricey.

An old VeeDub one would be cheap and reliable to operate, but likely costly to buy. A decent one these days would probably have to be a restored one. I saw a survivor one out on the road the other day and it wasn't looking too healthy, though it was still running.

KimInTheForest · « **Reply #26 on:** March 28, 2016, 09:25:51 pm »

I had a 1982 Westafalia vanagon (VW, of course) for 9 years til engine overheated. It was the last year of the air-cooled, and I loved it! That is what I would be looking for again, or possible a 1986-1991 (the good years of the water-cooled Westy vanagons). But any of those cost at least $10,000 to purchase and then thousands more each year in repairs and maintenance. It's just part of being a Westy owner unfortunately. I know from my own experience and the experience of many other Westy owners (thanks to the Go Westy site and westfalia.org forums).

Still, the dream is in play...

kim

slats1056 · « **Reply #27 on:** March 31, 2016, 12:49:43 pm »

Strangest thing is happening with the Doctors and the post Tx. problems.

It being recommended that I stop all supplements and vitamins completely!

With the exception of blood pressure Meds. and NSAIDS for joint pain/headaches. $:-\$ Looks like they are grasping at straws again.

Sure wish I could get some answers soon.

More tests and labs coming up in two weeks.

It is hard to know what is Liver/HCV related , Old Timers Syndrome

, or Treatment related issues. Whichever it turns out to be , at least the chances of liver cancer and more liver damaged are greatly reduced. Even the possibility of the liver repairing itself is encouraging. I am disappointed at the lack of solid info. at this point to say the least. But at least at the virus was undetected at EOT and achieved SVR12. Now just waiting on SVR24 results to continue on!

gnatcatcher · « **Reply #28 on:** March 31, 2016, 01:28:02 pm »

Tommy, eliminating supplements and vitamins will eliminate some variables -- let's hope that having an uncluttered baseline will enable some doc to reach a diagnosis. For all you know, maybe a supplement or an interaction between one supplement or vitamin and another was part of the problem. Something that works wonders for most people can be a major problem for someone else (like Zantac is for me).

This early in the cure game, the docs really have no way of knowing what is/isn't Liver/HCV-related in a particular person except by trial and error. When I saw my PCP today, I expressed ambivalence about whether I should try to get weened off Plaquenil, since I do still get aches and pains. My hepatologist and ophthalmologist are in favor of seeing if I can do without it, and my PCP was eager to have me take a half dose for six weeks followed by none at all because he agreed with the hepatologist that that's the only way to find out whether I still need it.

Fingers crossed that this latest experiment hits pay dirt for you, Tommy.

Gnatty

slats1056 · « **Reply #29 on:** April 01, 2016, 09:58:59 am »

Hey Gnatty! How goes it in Your neck of the woods these days?
I had stopped supplements completely during Tx. and up to SVR12 when I started feeling so bad. Picked them back up about the middle of January I believe. It wasn't until then that I had started feeling better. So I guess I'll start the game all over again. Game of thrones is back on again the last week or so. Last night I looked over all of My lab work and other than a few small anomalies, everything has been in range and in good shape.
The one bonus since EOT is that I have been sleeping great for 6-8 hours a nite.I haven't slept like that in so long I can't remember. Sometimes the joint pains wakes Me up. But I can usually fall back asleep. Although the headaches have been creeping back in , for the most part they are manageable.( No migraines Thank Goodness).
I seem to have noticed a correlation between G.I. issues, headaches , and liver irritation. Starts with some night sweats and head aches, then the liver irritation , and on to the G.I. issues. Usually lasts several days before clearing up. I am wondering if it is a healing crisis (Beto) going on as the liver is getting better and dumping all the bad crap that has accumulated in it over the years of torment and HCV!

Anyways , It has got to get better . I just have to pay My dues and keep on keepin' on!

WAITING IS GOOD , IT MEANS YOU ARE NOT GOING TO DIE! THE PERSON YOU NEED TO FEEL SORRY FOR IS THE ONE WHO GETS RUSHED INTO THE E.R. AND TREATED FIRST!

gnatcatcher · « **Reply #30 on:** April 01, 2016, 10:35:43 am »

Tommy, since you already had an uncluttered baseline, then maybe it is OTS? These days, aging is harder to reverse than cirrhosis

And more "fun" awaits us in the years ahead -- my 93-y-o mother is giving me a ring-side seat for watching what gravity does to a body over time. So, I ignore the aches and pains as best I can and am grateful that I have somewhat more energy than pre-Harvoni.
My PCP saw me yesterday for the first time since I finished treatment. Both at the beginning and end of the appointment, he said, "You sure played your cards right!" (skipping peginf/riba and waiting for Harvoni). His assistant told me I have better skin color -- she claims to be able to diagnose all sorts of things by how a person's skin looks -- maybe I can convince her to come to Texas and give you a dx

As for my neck of the woods, the weather's been teetering back and forth between summer and late winter instead of realizing that it's supposed to be spring. And the forecasts have been dreadful as far as predicting the amount of cloud cover, so my nature photography outings have been yielding mediocrities. Buy, hey, I can still walk and hand-hold the large telephoto lens, so I'm not complaining.
Yep, keep on keeping on. . . . . . . . . . . . . . . . . .

beto · « **Reply #31 on:** April 01, 2016, 12:46:19 pm »

Hey Tommy,

I know there are a few folks on this forum that may roll there eyes a bit when I get going on subjects like healing crisis and holistic paradigms, etc....However, I am a huge believer in heeling crisis and the idea that healing is not always a walk in the park. Like Gnatty said, you can be feeling off, or down right horrible, and someone will mention that your color looks good. That happened to me with an NMD (naturopathic Physician). She has known me for years. I was in to see her a few months ago at a time when I thought I must be relapsing because of symptoms...anyway she looked at m and said 'I can't get over how good your color is, and how you seem to glow' yet I was feeling like shit. HaHa! After I got my 24 SVR...literally the day after I got sicker than I have been in years with some crazy virus. I was nauseous and could not get out of bed. My wife was surprised, because I never get nauseous and no mater how sick I usually still get up and work. Crazy yes? I think my immune system just reacted 10 fold. I am already feeling much better. I believe that our livers might be the first organ to start to improve, yet what about the rest of the body that has been compromised all those years and how much in toxic stores in fat, muscle and connective tissue... stored because our livers could not handle the load. Eyes rolling I know...

Anyway, before I make everyone cringe...Gnatty (and others) made point about age related stuff...we kinda wAKE UP ONE DAY CURED BUT...WELL, OLDER. I knew a guy that came from money that was a heroin addict for 15 years...he never had a problem getting and affording his drugs. Then, he quit cold turkey (with hospital help). When he went to his doctor months after quitting he complained of all the aches and pains...wondered what could be wrong. His doctor told him, "well, what you are feeling is getting older...the analgesic powers of opiates masked that for years". He was a younger man when he started. Maybe HCV masks some symptoms or delays the onset...then we wake up cured and older.

I think you are going to hit a time when you start feeling better and will continue in that direction. You will get your 24SVR with flying colors and good numbers. The doctors have not encountered this post treatment phenomenon before, nor have we. I they can't explain something, they will try to eliminate possibilities. In your case they are starting with the supplements. There could be a connection, but I am guessing probably not...however, going off sups and then one supplement at a time reintroducing them might show you which, if any are causing issues. Because you have been with HCV for so long, you like most, know a lot about supplements, their efficacy and or the potential contraindications etc. This is not the realm of most doctors and allopathic medicine in general does not trust them. We can't be to careful though as nutraceuticals get more complex. We could discuss off forum sometime.

Tommy we are all pulling for you.

slats1056 · « **Reply #32 on:** April 01, 2016, 02:52:50 pm »

Never thought I would say this but here goes!!! The next S.O.B. that tells Me I look great that I can't be feeling that bad I'm gonna deck him

. Oh yea, did I forget to mention that I seem to be having a small issue with aggression/mood swings also.

Everybody has been on My case about laying up & not doing anything. Not true at all. If a tree falls in the forest and no one is there to hear it , does it make a sound?

. I still work 45-50 hour weeks with no lunch hour. Still do work around the house and in the yard. ( within reason ). just because no one sees it , I ain't doing anything! MY ASS!!!!! Don't think I took of more than 2-3 days over the past year for being sick. ( read as Migraine or severe lower G.I.distress)
The Old Timers Syndrome is most definitely on the table! I have definitely abused My body over the Years, sometimes inadvertently and sometimes on purpose. So therefore I do expect some issues as I was never expected to live to be 21 years old and here I am almost 60

Fooled them all , but the jokes on Me it seems!

Oh well , I'll take My lumps as they come and be thankful that I get to smell the flowers instead of checking out the roots everyday!

slats1056 · « **Reply #33 on:** April 15, 2016, 01:00:53 pm »

Else, where you at? The Conga drums are beating out a search message for You. You have been conspicuously absent as of late! Hope You are doing O.K. since Your little jaunt to paradise and back! If You don't answer , I guess I'll have to send out a search party!!

$:-\$

gnatcatcher · « **Reply #34 on:** April 15, 2016, 01:09:27 pm »

Else, what Tommy didn't mention is that he's reached
SVR24!

slats1056 · « **Reply #35 on:** April 15, 2016, 01:21:57 pm »

Heeeyyyyy! Didn't I just see You on another thread

? I haven't heard a peep out of Else or Cal lately! Still no word from Marianne (byebyec) either.

beto · « **Reply #36 on:** April 15, 2016, 01:23:52 pm »

Yea Else, Cal and Marrianne!!! Slatz SVR24 should bring y'all out to play!

Philadelphia · « **Reply #37 on:** April 15, 2016, 06:59:23 pm »

SVR24?! Sweet victory that one.

slats1056 · « **Reply #38 on:** April 15, 2016, 11:59:42 pm »

Yes Ma'am it most certainly is! And Thanx yet again. Wouldn't it be great to have an International Hep awareness day or Cure for Hep day? Seems fitting for a scourge that is so silent , stigmatizing , devastating , and misunderstood by so many around the world. Including the Medical community that still is chapters behind as are the insurance companies in this amazing book We call life! My heart felt thoughts and prayers go out to all that are fighting the good fight to get treatment for this debilitating silent killer. Although I have had My share of problems during Tx. and post Tx. I feel truly greatful and amazed at the exciting break throughs in medicine that have led up to this point in our lives. I can only imagine the hell of the early barbaric medical Tx. that people had to endure years ago!
I propose a toast to all the went through that hell, and most importantly , to the ones who did not make it to where We are today. I wish My personal message to all The Conga-Rats around the World in Heplandia. Here is to all of us!

THE ONLY PERSON YOU SHOULD TRY TO BE BETTER THAN IS THE PERSON YOU WERE YESTERDAY!

KimInTheForest · « **Reply #39 on:** April 16, 2016, 12:09:58 am »

Quote from: gnatcatcher on April 15, 2016, 01:09:27 pm

Else, what Tommy didn't mention is that he's reached
SVR24!

Congrats Tommy!!!

Philadelphia · « **Reply #40 on:** April 16, 2016, 03:14:00 am »

Indeed Tommy. I raise my glass (of lemonade) to us all. The survivors. The battle-scarred. The foot soldiers in the war against HCV. And I remember those who did not make it.

WholeFoods · « **Reply #41 on:** April 16, 2016, 12:20:52 pm »

Something in this thread was an eye-opener and that is the link between stress and bouts of fatigue. I hadn't thought too much about that before, but will pay attention to it going forward. My focus has always been whether or not there was some bug going around the office and there usually is... I've been a bug catcher for long time.

I recall a post on another board by one of the trial people who said they didn't feel up to socializing the first year after EOT, but around two years after EOT started to feel like trying to socialize a bit here and there. The reason given was due to frequent bouts of fatigue and lack of stamina.

It's easy to see how some people can become isolated when they're dealing with health issues that leave them low on energy. Particularly depending on the type of people who are around them. If the people around them don't have empathy, are a bit dramatic and non-supportive (which describes a lot of people these days,) it can be a real draining experience. Thank goodness (and Al Gore :-) ) for the internet!

slats1056 · « **Reply #42 on:** May 11, 2016, 06:28:08 pm »

Hello to all the Warriors out there around Heplandia!

Well , here I am working on eight months post treatment. Still feeling pretty rough. Lots of fatigue in the afternoons. Still have some headaches and quite a lot of joint and bone aches with some muscle weakness thrown in for good measure. It's getting harder and harder to make it through the work day. We won't even talk about around the house. That is turning into a disaster. Very chilly on the home front if You know what I mean! Tinnitus in the left ear is driving Me bat shit crazy. Seem to have a little fuzzy vision at times also. Been relying on My reading glasses more and more lately. Been very irritable as well with some weird mood swings bordering on aggression. Still plagued with lower G.I. issues every 3-4 weeks.
Sleeping great and have good appetite. Weight is down from 255 to 235 on purpose. Blood pressure has dropped since starting Amlodipine New Years day. It was spiking 190 ish over 90-100 before. Now 125-145 over 70-80 with meds. Brain fog has been an issue as well. Can't concentrate to read more than a couple of paragraphs. Been trying to avoid stress to no avail. IT SEEMS TO FOLLOW ME WHEREVER I GO!

Haven't been taking any vitamins, minerals, or supplements until I get My full blood and urine work up Friday and follow up with Internist 5-20-16.

OH WELL, NO ONE SAID THIS WAS GOING TO BE FUN! SORRY IF THIS SOUNDS LIKE BITCHING , BUT I FEEL BETTER GETTING IT OFF OF MY CHEST.
No witty quotes today boys and girls , I am all clowned out at the moment. Waiting on quitting time so I can get a break and relax.

Been watching the forums and a lot of treatment buddies have dropped out. Hope everyone is O.K.! especially Cal , Else , and Bree. I am at least not the only one out here with issues. I think a lot of people don't feel comfortable sharing that for fear of being chastised as being negative or a downer. Like I have always said, it all needs to be out there! The GOOD , the BAD , and the UGLY. Glad to see so many new posts and good results and Svr's all over the place. Keep up the good work everyone!!

beto · « **Reply #43 on:** May 11, 2016, 06:46:47 pm »

Hey Tommy,

You are entitled to bitch every now and then. You have kept a lot of folks smiling through all of this and you have been one of those having the roughest time. I think as time has gone by, many are disappointed that they have not felt better. We were all giddy and excited in the beginning. Over time, we have lost that collective energy. I have been a little off myself but I know it is from stress. Issue is, the sustained stress I feel these days. i have to believe that there is a reason for all of this and it will eventually pass. I don't have to tell you to soldier through. You are not alone in all of this. peace...

KimInTheForest · « **Reply #44 on:** May 11, 2016, 07:43:08 pm »

Good to hear from you Tommy! I think all reports of our post-treatment health - positive, negative or otherwise - are useful for others and for the collective body of knowledge. We are all breaking new ground with these new drugs. I too have been thinking of and looking for Cal, Else, and Bree. They have gone dark it seems.

La lucha continúa.

Good luck!

kim

gnatcatcher · « **Reply #45 on:** May 11, 2016, 08:21:15 pm »

Tommy and Kim, how I wish you didn't have to suffer so much! Your ailments sound a lot like when my lupus was active, so you have my heartfelt empathy.

slats1056 · « **Reply #46 on:** May 11, 2016, 11:09:07 pm »

Beto, Kim, and Gnatty

Great to chat with You guys!

Wish the other guys would check in as well. Nice to hear from those in the know. Only You guys can really understand what is going on. Seems like all of My issues and symptoms have been falling on deaf ears or simple minds lately.
Beto, Spot on as usual. Peace all over You as well!

Kim, Sounds like You are having a really rough go of it as well judging by what I have read here lately! So sorry to hear. But !!! Chin up

It has GOT to get better. I trust in that thought. Come what may, We have made it this far, ain't no turning back! Whether it is by ourselves or with the crowd we will overcome this B.S.

Gnatty, Good to hear from You My Dear friend! Hope this finds You well.

Thank You all for the kind words and well wishes! You don't know the lift that I got from reading Your posts! Sure wish the others would check in as well. It makes Me feel alot better just hearing from Ya'll!
I had forgotten what it feel like to interact with all of You.

Philadelphia · « **Reply #47 on:** May 12, 2016, 05:38:56 am »

I can only echo what others have said - I thank you for being such a bright spark in my days and wish things were easier for you.

I'm busy as a cat trying to bury crap on a marble floor. I feel pretty good most days, but I don't feel remarkably good, just normal good. That's not bad for someone approaching 60 I guess!

Hang in there and please report back when you have results.

KimInTheForest · « **Reply #48 on:** May 12, 2016, 12:47:38 pm »

Quote from: Philadelphia on May 12, 2016, 05:38:56 am

I'm busy as a cat trying to bury crap on a marble floor.

HaHa! Thanks Philly for giving my my laugh of the day. I am sure I'll be using that one somewhere.

kim

slats1056 · « **Reply #49 on:** May 13, 2016, 01:07:41 pm »

Philadelphia, Thanx for the post. Wish the spark was a little brighter at the moment. Like the cat analogy, not exactly how I word it , but good one none the less. I'll be 60 in a couple of months Myself and am hoping I can get back on some of My Vitamins and supplement to help improve My over all self!
BTW, I never did congratulate You on Your SVR24! I read it and forgot to post! Great news. Keep You head up and Good Health to You!!

DOCTOR FLIPS A COIN. TELLS THE PATIENT -- HEADS YOU GET A QUADRUPLE BYPASS---TAILS YOU GET A BABY ASPIRIN

slats1056 · « **Reply #50 on:** May 23, 2016, 10:30:51 am »

HELLO to all of You Happy Hippy Hep Warriors out there in Heplandia!!
Having a pretty good Monday after a couple of rough patches the last few weeks.
Just got My blood labs back from week before last. After telling the Docs' office to have them check for Vitamin & Mineral deficiencies as well sat the Standard B.S., the results are in

Just as I had suspected anamolies showed up.
Low vit. B , and vit. D deficient as well. Sugar has dropped back into the normal range. Blood pressure is holding good. The only other problem that showed up was low HDL(?good?) cholesterol.
I started back on Vitamins and am working out a plan for dosage for vit.D supplement. Sun is never a problem here , and I like Milk. So onward through the frogs. Still have Vit. B so starting them as well.
Hopefully this will mark a turning point in overall health and well being , as well as an increase in quality of health! Here We go boys and girls

I AM USUALLY ABOUT LIVE , LAUGH , LOVE , AND DANCE! BUT TODAY IT'S MORE LIKE RAISE , AIM , FIRE , AND RELOAD

KimInTheForest · « **Reply #51 on:** May 23, 2016, 12:10:12 pm »

That's good to get those vitamin deficiencies identified, Tommy. That's an easy problem to fix. A sublingual B-12 supplement might also help (methylcobalamin, not cyanocobalamin). Even if there is a little bit of B-12 in the B-complex you are probably now taking, it is unlikely to be available to you in the B-complex, which goes through the gut. Sublingual tablets or liquid for B-12 more effective. Goes directly into bloodstream.

Good luck, Tommy!

kim

slats1056 · « **Reply #52 on:** June 09, 2016, 01:01:24 pm »

Well boys and girls, two weeks into starting Vit D supplements My Joint/Bone/Muscle aches and pains are beginning to diminish though not completely gone ! Still having some cramps in the calf muscles . Vit B6 oral and B12 sublingual has helped in the energy department as well. Still having a crash mid afternoon between 2-5 o'clock. Overall I seem to be improving slowly. But let us not count the chickens before the eggs hatch. Still having sporadic lower G.I. problems when I don't stay with the Pro-biotic regimen.
The one thing that has been bugging Me is , My weight seems to fluctuate 6 to 8 pounds every few days. Not a problem , just bugs Me.
Kim and Beto , I hope You guys are feeling better. I haven't been on the forums lately because things have gone to hell in a hand basket around the house.
Gnatty and Philadelphia , Sound like You guys are still doing O.K. by Your posts.
DM, keep on chipping at it. I know how You feel. Looks like You also are having slight improvements day to day.

To all of You others out there that have been silent , stop by and drop us a line to know how things are going with You post TX. Lots of people have dropped out of sight the last 2-3 months. Sure miss seeing Your posts!

I DON'T HAVE AN ATTITUDE PROBLEM , U JUST HAVE A PERSONALITY THAT YOU CAN'T HANDLE!

KimInTheForest · « **Reply #53 on:** June 09, 2016, 03:53:48 pm »

Good to hear from you Tommy! I too have been taking sublingual B12 and oral D3 and B-complex for a while now. In some ways I feel a bit better. But my blood work and other tests, unfortunately, still show some pretty serious problems and anomalies - none of which was present pre-treatment. I am just back from one doctor and am being referred to yet another. Have had more doctor visits, tests and blood draws in last 18 months than in the entire preceding 60 years of my life combined.

Avoiding stress is crucial (although easier said than done, sometimes). Also am trying to focus more on living my life and less on fixing my health problems. We'll see how that goes.

Always appreciate your jokes and your spirit, Tommy!

kim

slats1056 · « **Reply #54 on:** June 09, 2016, 04:35:02 pm »

Kim , What is this stress You speak of

? I , like You have been to more Dr.s' appointment , had more tests , and more blood drawn in the last eleven months than I have had in 60 plus Years . I kid the nurse at the Lab about installing a tap so she can get 6-10 tubes of blood out everytime I go in. Nicknamed her Ms. Dracula.
As much as I trust and appreciated My medical team , I am going to try for another Doc to add to the stable that can maybe think outside the box and give a new perspective to things. I am just sick and tired of being sick and tired!

. Thankfully I am still pushing through and working full time to cover bills , but it is getting tough .

THE SECRET TO HAPPINESS IS TO HAVE A BAD MEMORY!

beto · « **Reply #55 on:** June 09, 2016, 05:21:51 pm »

Hey Tommy,

Yea we figured out what was going on with me and it was auto immune issues and thyroiditis. The painful lymph nodes were actually and inflammed thyroid...pretty classic. My TSH was barely detectable and T4 was out of range on the high side. Strange that Hyper-thyroid would cause fatigue and weight gain...but for some it does. I had immune makers that showed positive and they say I have sjorgrens syndrom (auto immune). Put me on beta blockers...hate em. It is so ironic it makes me laugh. I thought that after the cure I was going to avoid pharmeceutical drugs and get all buff and healthy...lose 10 years. Ha...

Anyway, I am told that the thyroid will most likely correct itself over time...otherwise more meds...haha. Over my dead body bitches!!!

Glad you are doing better Tommy.

morab · « **Reply #56 on:** June 09, 2016, 07:16:58 pm »

The secret to happiness is a bad memory!
I needed to hear that one today. I will enter my 9th week of treatment on my birthday next Monday!
Feel like crap, the few people I have told I never hear back from. I feel like I must have the plague or some huge personality flaw, or maybe I just plain stink!
The lack of empathy from people these days is very disheartening to say the least.
The only thing I do have to look forward to is this forum and all the great energy among the folks here.
I even have a sister I thought I was really close to just STOP calling me after years of us talking at least once a month, if not more and all she has to say is oh life is not about just you?
Staying stress free has been a true struggle and I thank you all for keeping me cheered up.
morab

slats1056 · « **Reply #57 on:** June 09, 2016, 08:30:40 pm »

Hey Beto,
Glad they finally put the pieces together for You. At least that is a goal to aim at. Not that it makes it any easier. MEDS,MEDS.MEDS!!! Right!

Morab,
I know exactly what You mean! Seem to have lost all the support staff over the last couple of Years Myself! A whole lot of it the last 12 months. I used to think I was the glue that held things together, but apparently I was sadly mistaken. A legend in My own mind apparently. Hope You get to feeling better. Keep Your chin up and take care of Yourself because no one else will! Every time I think I have the stress under control the shit hits the fan again and it is aimed right at Me

Definitely a great bunch of people here on the forums with no judgment and plenty of support

ME : FOR THE FIRST TIME IN MY LIFE THINGS SEEM TO BE GETTING BETTER

LIFE : LOL , GIVE ME A SECOND!

gnatcatcher · « **Reply #58 on:** June 09, 2016, 08:35:06 pm »

Quote from: slats1056 on June 09, 2016, 01:01:24 pm

Well boys and girls, two weeks into starting Vit D supplements My Joint/Bone/Muscle aches and pains are beginning to diminish though not completely gone ! Still having some cramps in the calf muscles . . . .
Gnatty and Philadelphia , Sound like You guys are still doing O.K. by Your posts. . . .

Tommy, I can relate to the calf cramps -- few things equal being awakened out of a sound sleep by a sudden calf spasm that registers 9 or 10 on the pain scale. But Harvoni's not to blame, because I'd been having them for a few years already. My Vitamin D is in the normal range. A friend suggested low magnesium, so I ran a nutritional analysis on my typical diet and added enough supplement to get into the recommended DV range, but that's not the solution to my body's bone/muscle/nerve shenanigans either. Hey, Tommy, how about a race? The first one to have zero aches or pains for a month wins

You've got the advantage of youth -- you're not even 60 yet.

In case anyone reading this wants to run a nutritional analysis on your typical diet, the USDA has a great database -- you can, for example, put in Vitamin _ and sort by which foods have the most, or you can put in a food and see how much of each nutrient it contains. https://ndb.nal.usda.gov/ndb/nutrients/index?fg=&nutrient1=63&nutrient2=&nutrient3=&subset=0&sort=c&totCount=0&offset=0&measureby=m

morab, yes, this is an excellent place to come for a pity party. There are enough of us that if someone has a shortage of empathy, someone else has an adequate supply.

slats1056 · « **Reply #59 on:** June 09, 2016, 08:57:48 pm »

Gnatty My Dear,
Oh, it is on . Wait a minute , what about the memory thing? LOL

Magnesium is one of things I haven't checked or started back taking yet. I wouldn"t say three months shy of sixty is exactly Youthful!!!

I know it isn't Tx related ( the cramps ) just never had them before. But then again I never got old before either!
As usual , all the right words and plenty of research data! Thank You My friend!

I STRETCH MY ARMS , I BEND MY KNEES ,I STRAIGHTEN MY NECK AND THEY ARE ALL CRUNCHING! CONCLUSION : I'M NOT GETTING OLDER , I'M GETTING CRUNCHIER!

morab · « **Reply #60 on:** June 09, 2016, 09:03:41 pm »

I thank you all for the emotional support.! Only those of us on this forum know the physical pain we go through from having Hep C, then tx with side effects.
I too have had leg cramps for about 3 years now and neuropothy in my feet that is just scarry as hell. I do take a good monomagnesium malate that has really helped with the leg cramps.
I have only found one brand after trying many that helped the leg cramps. Low back has been a pain issue for years, now it is intense on tx along with joint pain like I have never had before, then add a few insensitive people on top of that?
One thing my Dr. told me was that blood tests for magnesium do not give a true reading because it may show in the bloodstream but it is stored in your muscles, therefore he said if you have magnesium deficient symptoms? Treat it with magnesium.
Thankful I do have a supportive partner and 2 grown kids that make my life worth living.
Other than that I find myself being very reclusive and for once in my life I am making every day about ME!
I do look forward to the end of tx! And whatever comes after that.
morab

Philadelphia · « **Reply #61 on:** June 10, 2016, 08:20:34 am »

I'm doing okay Tommy. This is a hellishly busy time of year for me so I'm feeling a little under the pump. Staff issues at work, kids and parents being high needs, report time, lots of extra curricular activities taking up lots of time and energy.

Plus three trips to Sydney in the next month. I haven't been down to the Big Smoke since about March, now I'll be there three weekends out of the next four.

I'm seeing my medical people next week - time for my 6 monthly u/s, yearly gastroscopy and check in with my specialist. I'm hoping for no bad news, but I doubt that I'll get great news either. My guess is things are going to be sitting around the same sort of ranges they were at my last lot of test. I don't feel any better or any worse, than when I finished treatment.

I'll be really happy if everything is the same. I'd prefer greater numbers of platelets and for my INR to be better, but with my degree of liver damage it's unlikely. I'm just hoping for status quo!

I'll be sure to keep you all updated.

slats1056 · « **Reply #62 on:** June 10, 2016, 08:59:31 am »

Morab,
Keep plugging away and You will be done before You know it! I have had back problems before. But , the lower back during Tx. got quite brutal. Hot showers , heating pad , and stretches when possible helped. Also , had upper back and neck problems post Tx. Several trips to the Chiropractor and Masseuse helped greatly. Still going periodically to keep it in check! The lower back just won't give it up though!

The support around You at home and here helps immeasurably , I can attest to that. Mine has dwindled over the last 11 months to My Younger two children. Oldest daughter has 2 kids and household to take care of so I talk to her occasionally.Spouse decided to leave, None of the family except My sister calls . The only time anyone calls or comes by is when they want or need something. Depressing to say the least

!
Quite the recluse as well the days so I can relate. Lack of funds has negated the chance to get out and smell the roses as it were! So I just do as much as I can around the house and try to stay positive!
Don't worry , don't hurry it all will come! Let the chips fall where they may. Smile and laugh at every chance , it is good for You!

WHENEVER TOU SEE THE WORDS LOW-FAT OR FAT FREE , THINK OF THE WORDS-
CHEMICAL SHIT STORM

morab · « **Reply #63 on:** June 10, 2016, 09:20:56 am »

Tommy
You made my day! I can relate to every word! I did make a trip to my chiropractor a couple of weeks ago and that really helped! Need to return!
I have got to find a way to not let other peoples problems bother me, like you said I too have a sister who is always needing help on a constant basis, she has HASH disease and her liver is in really bad shape, mine is not bad at all thanks to herbal milk thistle for many years. My NASH sister is also loosing her mind at 69 years old and just can't keep it together, she is a misery loves company person!
I can't go there any more with her! Yesterday I actually had 2 family members pile crappy emails on me at once, geeze no empathy at all!
I really need to remember that my new body pains are related to this treatment and hopefully that will come to an end at some point in the future.
Have you done any detox herbs after treatment? I am trying to plan what I will do after tx to rid my body of toxins and return to some vitamins, minerals, and milk thistle products to rehab myself of the treatment in hopes of getting my body in better shape.
Right now I am so fatigued I get NO exercise, maybe I need to force myself to walk and exercise every day.
This forum is my life right now!
Thank you all for being a great shoulder to vent!
Morab

slats1056 · « **Reply #64 on:** June 10, 2016, 09:26:56 am »

Philadelphia,
Good to hear, staying busy can be tiring but keeps the mind busy as well! Fingers crossed and good thoughts on Your check up and tests

. The liver has got to get better since it doesn't have to fight the virus any longer! No news is good news sometimes

.

TAKE CARE OF YOUR BODY! IT'S THE ONLY PLACE YOU HAVE TO LIVE IN!

gnatcatcher · « **Reply #65 on:** June 10, 2016, 09:58:32 am »

Morab, is there any place where you particularly enjoy walking (some place you find beautiful or de-stressing or good for critter and/or people watching)? Even if you have to drive to get there, it's worth it to restart the momentum towards having more energy.

Tommy, so sorry your marriage may be a casualty.

Philly, good on you that you're going into the labs with a win-win attitude: no change is okay, and so are improvements in platelets and INR.

All of us are still breathing. All of us can probably remember moments when we didn't think we WOULD still be breathing by the time 2016 rolled around.

morab · « **Reply #66 on:** June 10, 2016, 10:41:09 am »

gnatcather
I do have a place to go to walk, I am currently living with my boyfriend, but my own home is 6 miles from here dirt roads, one of my daughters lives in my house but between my 2 oldest children and myself we have 80 acres of Ozark Mountain land that is gorgeous.
I just need to make myself have the energy to get in my truck and go home, fix up and clean my bedroom there and make myself walk all this off.
The ticks, chiggers and bugs are bad right now but at this point I really need to make myself take care of me for a change.
I actually have a few patches of wild ginseng on my land that I need to photograph right now. A bluff line that has cliff dwellings and a waterfall when the wet weather creek is flowing.
Thanks for pushing me in that direction.
I will head for Home today!
morab

FutureThinker · « **Reply #67 on:** June 10, 2016, 11:59:35 am »

Morab, your home turf sounds absolutely gorgeous!! Go there and regroup!!! I'd go with you if I were there. I get so much from my walk every day, really helps me to clear my mind and enjoy the birds, beauty of the area, put things for which I am very grateful & blessed up front & center. You can do this and you are on the home stretch.

Let us know what inspirational things you saw/smelled/heard/touched when you post again! Hang in there, FT

beto · « **Reply #68 on:** June 10, 2016, 12:51:38 pm »

Everyone's livers are better after getting that fat HCV monkey off our backs...this is a guarantee. As you all start to get scans and so forth, you all will be surprised...or my name ain't Arnold Ziffer (which it is not). but you get my point. For one thing, we are all walking around with liver enzyme numbers that are better than the average Joe. Mine just keep going down...13/14 a few weeks ago.

Gnatty...I would rather see you and Tommy race to the mail box...hehe. Tommy is a young buck. Not even 60. 60 is the new 80...er uh wait...I mean 40. Calf cramps do suck and it sure hurts to massage them out. Leg cramps are responsible for more middle of the night f-bombs that any other source...this is a scientific fact.

Morab...those peripheral foot and ankle aches...ouch. I used to get them back when I was infected and my liver was pissed. Hate em. Only get those every once in a while now. Hang in there.

Philly- your platlets will get better. I bet your liver is in much better shape that you think.

Anybody hear from Cal yet? And that dal berned Bree. Ain't heard a squeak out of that lot. Not even Scout. They would love to chime in on all of our belly aching I am sure

slats1056 · « **Reply #69 on:** June 10, 2016, 01:55:46 pm »

Morab,
Gnatty is right, a little exercise goes a long way to relaxing and helping to cope with stress

Oh yeah and they say it's good for You , too

. Not a health nut Myself but I try to get in at least a mile or two a day. I like to refer to the aches and pains as OLD TIMERS SYNDROME

. Better to leave foot prints in the sand than butt prints, LOL!

Gnatty,
With all the crap going on around Me , I am strangely at peace with. A little strange though!

I EXERCISED ONCE BUT FOUND I WAS ALLERGIC TO IT! MY SKIN FLUSHED AND MY HEART RACED. I GOT SWEATY AND SHORT OF BREATH! VERY DANGEROUS STUFF I TELL YOU!

morab · « **Reply #70 on:** June 10, 2016, 02:32:26 pm »

Tommy
What a delight you are! Allergic to exercise hillarious! You are cracking me up with laughter.
I am hitting the woods in the morning before the heat hits.
The snakes are out and shedding their skins, so I will boot up, wear jeans, and pack my camera!
I really need to check the holler for golden seal as it usually grows in the same places as the ginseng~
I don't ever harvest the ginseng but the golden seal I make a tincture out of as it is more prolific when you can find it.
Thanks for all the support each and every one of you!
Morab

KimInTheForest · « **Reply #71 on:** June 10, 2016, 02:51:02 pm »

Quote from: morab on June 10, 2016, 10:41:09 am

I do have a place to go to walk, I am currently living with my boyfriend, but my own home is 6 miles from here dirt roads, one of my daughters lives in my house but between my 2 oldest children and myself we have 80 acres of Ozark Mountain land that is gorgeous.
I just need to make myself have the energy to get in my truck and go home, fix up and clean my bedroom there and make myself walk all this off.
The ticks, chiggers and bugs are bad right now but at this point I really need to make myself take care of me for a change.
I actually have a few patches of wild ginseng on my land that I need to photograph right now. A bluff line that has cliff dwellings and a waterfall when the wet weather creek is flowing.
Thanks for pushing me in that direction.
I will head for Home today!
morab

Your property sound beautiful and very peaceful and restorative, morab. I would love to go someplace like that. I have had such a powerful feeling throughout my entire post-treatment illness and problems that if I could just go to a cabin in the woods somewhere and cut myself off from everything and everyone, I would recover and be okay.

kim

beto · « **Reply #72 on:** June 11, 2016, 10:02:55 am »

Kim,

If only we lived in a world where it was attainable for anyone that needed it, to have an Hiatus to recover from emotional, spiritual and physical stressors and illness. Everyone deserves this at points in their lives when they just need everything to stop for a while.

In our case, the perception is; "you have reached SVR...you are now cured. Get clacking."

. Most of us never stopped "clacking".

I hope that you and many of us can just find some respit...too bad that money is always involved. In my case I have to wonder...why did I suddenly wake up with auto immune issues? Well...I think stress at a time when my body was "saying slow down bitch." The world does not stop because we need rest and healing.

perhaps if we can't get a break we can zen our way through life. It is Saturday and I have to drive out of town, do an event and drive back. I may just call in sick.

KimInTheForest · « **Reply #73 on:** June 11, 2016, 01:12:45 pm »

So true, Beto! Throughout treatment and now post-treatment I have given much thought to the difference between being 'cured' and being 'healed' - although I am sure I went into treatment thinking of those terms as synonymous. But now I see being cured is just what the chemicals do during the 12 weeks of treatment. Being healed takes a lifetime, and it may never be complete.

My own body and my Self were under tremendous stress during and post-treatment - physically, chemically, mentally, emotionally. I have never in my life felt my body under so much stress from all quarters. I experienced 12 weeks (and more) of extreme sleep deprivation, extreme weight loss, and extreme malnutrition. I was worried throughout that all that stress would impair the drugs' ability to cure me. But these new DAAs are able to do that regardless of what condition your body is in. What I needed to worry about is what all that stress was doing to other aspects of my life and health and immune function, and what the consequences of that would be.

I had absolutely no support (apart from this forum, which has been great). I was losing so much weight I was afraid I would end up in the hospital. I asked my family twice if I could come over and sit at the table for one meal. They live 12 blocks away. Was told no both times. I had one family member scream at me, purple in the face, on my last day of treatment, how he could kill me any time he wanted, while he smashed his fist into his palm to prove his point. That day up to that point had been the happiest most miraculous day of my life because I knew by then I was cured after 45 years of Hep C. And for me the whole day seemed like it should be a celebration - and one I should be celebrating with family. My immediate family is very small, just 2 remaining members apart from myself (my mother and brother). And those 2 have lived together for my brother's entire life, while I left home when I was 16.

And now it falls to me (the only one responsible enough to be designated in a power-of-attorney document), to clear out and sell my mother's enormous house (the one I wasn't allowed to eat at even when I was at my very weakest) filled with a lifetime of stuff (my mother and brother are hoarders) while my brother continues to live there (rent-free as always) and have his drug thug friend who assaulted me come over whenever he wants. All doctor visits are filled with gloom and doom. That peaceful little cabin in the woods looks so very far away to me...

Obviously having a difficult morning here. I will get better. I have spent a lifetime on my own boot-strapping myself out of all other problems. I will find a way out of this too...

(PLEASE NOTE: I am not looking for legal advice re: family situation. Comments like "Get a lawyer" or "Call the police" are not useful and just create more stress for me. I have of course done those things - many times. I am sharing my personal story here simply because it is one of the few places that I can. It helps me to have others know. I know what I need to do to get past this, and am doing it. Thanks.

)

kim

FutureThinker · « **Reply #74 on:** June 11, 2016, 03:38:19 pm »

Kim, I am so glad you feel you can share these thoughts and issues with us. Families sure are funny things, aren't they? You and I have a lot in common in this regard; the characters may be different, but you definitely are not alone with having struggles with family members. I, too, left home early, 17. The fact that we had the where with all to pull that off speaks volumes about just how much inner strength is there. We are fighters!! Not going to get knocked down and not get up.

I am confident that you are going to get thru this very difficult, trying time in your life, just as in the past. You're gonna do it! I am so very hopeful that your alternative treatment is going to give you some relief. And it sounds like your docs are still working on figuring your physical status out. This is apparently going to take a ton of patience, to say the least. Not easy to do, I know.

Have you considered trying mindfulness? This has been around for a long time but is getting a lot of attention in the medical community these days. Check it out if you aren't familiar with it.

This new DAA treatment comes with a lot of unknowns. I just keep thinking that even tho some are going thru what seems to be hell, there is good that's going to come out of all of this. We are here for you.... and you are in my thoughts and prayers for a better tomorrow. Hang in there! FT

brie41 · « **Reply #75 on:** June 11, 2016, 04:30:56 pm »

Hi Kim,

You know I was blessed with a good family, not perfect, but we are good to each other. Now on the other hand I married into a not so nice group of people, much of whom I have eliminated from my life. It is difficult with having a child, but they were energy vampires and I am only better for it. I actually am happier alone than if I am around crappy people. Sorry you are going through such a tough time. I do hope with time, you do finally feel healed! Take care. Brie

morab · « **Reply #76 on:** June 11, 2016, 04:37:48 pm »

Kim
My heart goes out to you!
Manifest that cabin in the woods you need it so much.
So glad you have the forum, as I am so glad to have this forum.
Love prayers and energy coming your way!
Morab

KimInTheForest · « **Reply #77 on:** June 11, 2016, 05:07:49 pm »

Quote from: morab on June 11, 2016, 04:37:48 pm

Manifest that cabin in the woods you need it so much.

In a way I have already manifest that cabin in the woods, Morab... I bought myself this beautiful Westfalia camper van 2 months ago to mark my new life. Photos here:
http://forums.hepmag.com/index.php?topic=4060.0

Now I just have to get out from under all this stuff in my life and drive off into the sunset and live in it. My little cabin in the woods - on wheels. Like they say about Westies: "It's not a slow car, it's a fast house!"

kim

morab · « **Reply #78 on:** June 11, 2016, 05:17:44 pm »

Oh Kim I am so glad you did that!
I know how you feel about family and people just not being there for you when you need it the most, at least I do have a great partner, he is a caregiver for my daughter with CHARGE Syndrome, and my other 2 grown kids are here for me so I do feel blessed to have them.
Hang in there you have helped so many of us on the forum!
You are a godsend and inspiration to me and many others!
morab

AussieRosa · « **Reply #79 on:** June 12, 2016, 02:05:14 am »

Kim, I'm so sorry to hear about all the strain you've been under. Life must seem so unfair at times like this. We all have a natural right to expect family to be loving and there for us, and when it doesn't happen that way it just plain hurts deep. At least now you have your cabin on wheels that can take you away to places unsullied and healing. Wishing you all the very best.

slats1056 · « **Reply #80 on:** June 16, 2016, 09:24:15 am »

Hello to all of My Fellow Tribe Members of Heplandia Around the World!

Been out of pocket a lot lately. Reading and lurking but not posting mostly. Seems every time I get to reading , something comes up and off I go! Lots of good news and reports on the different Forums. A lot of new people out there and a lot of old timers have dropped off the radar in the last few months. Most seem to be doing pretty good post treatment with the exception of a few of us. Fantastic new trials and results , also.

I seem to be feeling pretty good as I have gotten back on My supplements, especially the Vit B and Vit D! Legs and hands are doing much better , the lower back and hips as well as the neck are still giving Me Hell. Can't seem to reduce or eliminate stress and strife in My life which I attribute the neck and headaches. Can't figure out for the life of Me the correlation of the lower back and hip aches and pains which I never had before in My life! Not muscle , but bone and joint as far as I can figure. Have had back problems before so , I know what aches , sprains , and pulled muscles feel like. I have a rib that pops out of joint occasionally which is excruciatingly painful and creates severe muscles spasms and cramping. Lots of Chiropractic work and Massage therapy when that happens.
But , I digress! Been doing a lot around the house and yard when it isn't to hot or raining. New life , new adventure , new obstacles to conquer! But I will survive , working on the thriving part. So busy I don't have time to think most of the time. Which is good I think. Have not been giving much thought to My new situation of being single for the first time in 36 years the last two weeks.

Here is to everyones good health and prosperity in all of Heplandia around the world. The tribe is strong , We will survive!

INSTEAD OF WISHING YOU WERE SOMEONE ELSE , BE PROUD OF WHO YOU ARE! YOU NEVER KNOW WHO HAS BEEN LOOKING AY YOU AND WISHINGTHEY WERE YOU......

FutureThinker · « **Reply #81 on:** June 16, 2016, 12:23:09 pm »

Slats, thanks for updating us and glad to hear you are handling all the stress/changes that have been going on --- life isn't always what we'd like, is it?
Very glad to read your attitude is good and yes --- you will survive all this!!!! It may not be fun at times, or pretty, but just keep putting one foot in front of the other. Maybe these are opportunities vs. mishaps, glass half-full vs. empty. Take care and good to hear you're hangin' in there! FT

beto · « **Reply #82 on:** June 16, 2016, 02:57:22 pm »

Sorry to hear of your woes Tommy. 36 years is a long time. It (almost) seems to me that we are somehow delaying major events, illnesses, emotions and spiritual 180's as we trudge through the rigours of hepatitis and the cure of it. Like maybe a bunch of stuff is on hold and then Kablooey.

With my spouse it is kinda like..."OK, we did the hep-C, we did the cure and EOT with all of the uncertainty...then the SVR...and the waits for labs...now you have used up all of your grace chips" tee hee. I must say (as much as I hate bringing up negatives); the weirdest stuff has happened since EOT. Maybe we just wake up from a long stupor ...I don't know.

hang in there Tommy...Party at Bree's...haha. Maybe I will look you up when I'm next in the big state. peace

Philadelphia · « **Reply #83 on:** June 16, 2016, 05:47:10 pm »

Ah, Tommy. Sometimes life serves us a big crap sandwich with extra crap.

Good to hear from you, and to hear you are still making forward progress no matter how slow it seems. I'm doing my best to do that too.

slats1056 · « **Reply #84 on:** June 17, 2016, 03:33:03 pm »

FT, Thanx! Stress is kinda like the crap sandwich Philly refers to

Beto , Aptly put as usual. It is like every time crap hits the fan it is aimed right at Me!

Kinda like the poster of the kitten hanging on the clothes line....Hang in there baby!

Philly, I think that Texas Toast was made exclusively for a crap sandwich... i.e. The more bread there is ---- The less crap You taste!

Slow and steady wins the race! Glad You are feeling O.K.!

Hope You are getting a break from Your hectic schedule!

EVERY STRUGGLE IN YOUR LIFE HAS SHAPED YOU INTO THE PERSON THAT YOU ARE TODAY. BE THANKFUL FOR THE HARD TIMES , THEY CAN ONLY MAKE YOU STRONGER!!!!!

KimInTheForest · « **Reply #85 on:** June 17, 2016, 03:41:53 pm »

Quote from: slats1056 on June 17, 2016, 03:33:03 pm

EVERY STRUGGLE IN YOUR LIFE HAS SHAPED YOU INTO THE PERSON THAT YOU ARE TODAY. BE THANKFUL FOR THE HARD TIMES , THEY CAN ONLY MAKE YOU STRONGER!!!!!

Totally agree with this, Tommy! Hang in there. A lot of changes going on for you. It's as though losing one major thing in our lives (the Hep C) triggers an upheaval and great shifting of tectonic plates affecting everything else in our lives. Sometimes for the better (who doesn't want to lose Hep C?), other times it's hard to tell til the dust settles. Til then, I'm just hanging on because if I fall off I might get trampled by hooves flying past.

kim

slats1056 · « **Reply #86 on:** June 17, 2016, 04:18:24 pm »

Hold on a minute!! Do I detect a disturbance in the force?

? NOPE, just gas.

Time to laugh again people...

KimInTheForest · « **Reply #87 on:** June 17, 2016, 04:26:43 pm »

Quote from: slats1056 on June 17, 2016, 04:18:24 pm

Hold on a minute!! Do I detect a disturbance in the force?? NOPE, just gas. Time to laugh again people...

You betcha! Haha! Keep the laugh train rollin' Tommy.

slats1056 · « **Reply #88 on:** July 15, 2016, 02:41:39 pm »

Greetings and Salutations to all of You out there in My extended Heplandia Family!
Hope everyone is doing good , doing better , or striving for normalcy as I have been attempting lately. As usual , busy as the proverbial cat on a marble floor the last month.
Overall health and well being seems to be slowly improving. Either that , or I am getting used to pushing Myself more little by little. Haven't had a headache in the past month. Now that is good and welcome news!!!

Hands and legs have been improving since getting back on the supplements, lower back and hips are still giving Me problems. Neck is not so much a problem , but then again I have been to the Chiropractor a lot since New Years and the masseuse whenever I get the time.
Feel as thought I have aged 5-10 years in the past 12 months. Eyesight is rapidly declining and the hair is falling out faster

But then again--- I AM GETTING OLD---LOL!

THEY SAY WE LEARN FROM OUR MISTAKES. THAT IS WHY I AM MAKING AS MANY AS POSSIBLE. I WILL SOON BE A GENIUS!

KimInTheForest · « **Reply #89 on:** July 15, 2016, 02:51:34 pm »

Great to hear from you, Tommy! So glad your health is improving - even if slowly. Mine is too at last.

Keep on keepin' on!

kim

Philadelphia · « **Reply #90 on:** July 15, 2016, 05:54:58 pm »

Good news Tommy. Improvement is good!

BillT · « **Reply #91 on:** July 17, 2016, 10:05:38 am »

Hey old man welcome back,

I'm glad to hear you're doing better.I can relate to the hips,back,and vision thing.When I'm finally able to get up in the morning I need my glasses to find my glasses.

My recovery,thank God,was really quick.I think,like with the treatment,we all recover differently and in our own time.Good to hear from you and that you're doing good.Cheers

beto · « **Reply #92 on:** July 17, 2016, 02:59:26 pm »

hey tommy,

maybe the virus kept us young so it could munch on our livers longer...teehee

BillT · « **Reply #93 on:** July 17, 2016, 09:56:49 pm »

Ok.That's really twisted Beto.

slats1056 · « **Reply #94 on:** July 18, 2016, 09:55:12 am »

Kim and Philadelphia, Thanx

Hope Y'all have been doing O.K. lately. Been so busy that I haven't had time to post much lately. Been trying to keep up reading the posts though!

Bill , Hope You are doing better as well

. Once I get moving , I am good. But getting up and moving is the hard part. This OLD TIMERS SYNDROME SUCKS

Beto, Bill said twisted--- I say one sick Sumbitch

! But I like it

. Not a bad theory. Goes with the Vampire idea!

STUPID!
Smart
Talented
Unique
Person
In
Demand

$:-\$

drummerman · « **Reply #95 on:** July 22, 2016, 11:25:49 am »

Quote from: beto on July 17, 2016, 02:59:26 pm

hey tommy,

maybe the virus kept us young so it could munch on our livers longer...teehee

Actually that is not as far fetched as it sounds.

We know viruses are very smart. Once the host is gone their free meal is gone.

dm

slats1056 · « **Reply #96 on:** August 05, 2016, 12:42:40 pm »

Hello to all Mavens , Admirers , and Seekers of SVR to infinity! Heplandia Rules!

Still improving ever so slightly by small increments at a time. Fatigue in the evenings is still a bitch! Lower back , hands , and feet are still giving Me fits.
BUT---- Overall I have been feeling better ( or else I am ignoring the small stuff ) as time passes. Almost 10 months post Tx. at this point. Think it's time for another eye exam. Also, made a Dentist appointment to check out and start repair on the old choppers . Having some issues with loose Crowns and fillings. Now that I won't be needing a new liver , I might as well get some new teeth! LMFAO

Hey DM,
Glad You heard from Cal. I was going to holler at her this weekend.

Philadelphia,
I see You are still a busy little bee as usual. Hope all is well with You!
Kim ,
You are posting up a storm I see. That means You are feeling better right?
Beto,
I miss Your twisted humor that tickles My funny bone. How are You these days?
Gnatty,
Your upbeat , informative , and quirky posts are greatly missed. Hope You and Your little avian photographic endeavors are going good and You aren't having any problems!

Has anyone heard from Else or Bree lately? I know that I have been busy as all get out settling back into housework , yardwork , ETC. so that I have not posted much as of late. Just been reading and lurking as usual. Reading , TV , and Computers have a tendency to lull Me to sleep these days. Which by the way is pretty darn easy!

EVERYBODY IS A GENIUS. BUT IF YOU JUDGE A FISH BY ITS ABILITY TI CLIMB A TREE , IT WILL LIVE ITS WHOLE LIFE BELIEVING IT IS STUPID!
ALBERT EINSTEIN

KimInTheForest · « **Reply #97 on:** August 05, 2016, 01:43:27 pm »

Good to hear from you tommy!

Glad you're feeling better. Incredible how long it is taking us to get there! I too am FINALLY feeling better - pretty much like my pre-treatment self at this stage. But my bloodwork has not caught up with my sense of improved health. So doctors still think I have big probs somewhere. Not sure what to make of that. My instinct tells me: If you FEEL well, you are. So why don't I have enough hemoglobin, red blood cells, ferritin, neutrophils, platelets, and on and on? No comprendo.

I can say this has been life changing... And maybe that was the point of this whole long post-treatment malaise. Had it not been for this year-long debility sidelining me (confining me to bed for a lot of the time), I would have rushed right back into my OLD life doing all my OLD things, and without thinking about my choices or whether I still want to do that stuff and be that person... basically just powering along on autopilot. But as a result of being taken out of the game for more than a year now (including my treatment time), I have been doing a lot of reflecting. And I see that - right now at least - I want a different life from the one I had pre-treatment, with different focus and activities and relationships...

keep on smilin'
kim

drummerman · « **Reply #98 on:** August 05, 2016, 02:05:50 pm »

Quote from: slats1056 on August 05, 2016, 12:42:40 pm

Hello to all Mavens , Admirers , and Seekers of SVR to infinity! Heplandia Rules!

Still improving ever so slightly by small increments at a time. Fatigue in the evenings is still a bitch! Lower back , hands , and feet are still giving Me fits.
BUT---- Overall I have been feeling better ( or else I am ignoring the small stuff ) as time passes. Almost 10 months post Tx. at this point. Think it's time for another eye exam. Also, made a Dentist appointment to check out and start repair on the old choppers . Having some issues with loose Crowns and fillings. Now that I won't be needing a new liver , I might as well get some new teeth! LMFAO

Hey DM,
Glad You heard from Cal. I was going to holler at her this weekend.

Philadelphia,
I see You are still a busy little bee as usual. Hope all is well with You!
Kim ,
You are posting up a storm I see. That means You are feeling better right?
Beto,
I miss Your twisted humor that tickles My funny bone. How are You these days?
Gnatty,
Your upbeat , informative , and quirky posts are greatly missed. Hope You and Your little avian photographic endeavors are going good and You aren't having any problems!

Has anyone heard from Else or Bree lately? I know that I have been busy as all get out settling back into housework , yardwork , ETC. so that I have not posted much as of late. Just been reading and lurking as usual. Reading , TV , and Computers have a tendency to lull Me to sleep these days. Which by the way is pretty darn easy!

EVERYBODY IS A GENIUS. BUT IF YOU JUDGE A FISH BY ITS ABILITY TI CLIMB A TREE , IT WILL LIVE ITS WHOLE LIFE BELIEVING IT IS STUPID!
ALBERT EINSTEIN

Hey Tommy ,

Good to hear from you ! and they you are improving! I feel a little better every day, but it is so slight it is hard to notice. Know what you mean about yard work...just got through mowing my daughter's lawn. I actually have 5 lawns I am taking care of and with all the rain and sunshine there is always one that needs mowing. Finishing up a 6 day run on Saturday of a show at one of our theaters, so staying busy. Next week I am going to visit our local community center and check out their exercise programs. I am hoping that regular exercise will help me physically and mentally. Fingers crossed.

Anyway, gotta go get a nap before show.

Hang in there man.
dm

slats1056 · « **Reply #99 on:** August 05, 2016, 03:03:32 pm »

Life would be such a sad and dreary place without NAPS!!!!!

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