reaching anew low

[M50]

This last week I was forced to watch twice as my Father in his 70`s had to cut the grass here and at the homes of two neighbors. I can`t beleive I couldn`t find it in me to get out of bed and help the man. Talk about depressing. I don`t know how long I can hold on like this. I worked from age 14 to 48. I`m bed ridden now most of the time and yet I can`t get any help money wise. I know these are tough times but I know alot of folks get SSIor SSD and seem to be in alot better shape than me. Whats the deal? Is there some reason the gov. has for not seeing the effects of HCV as being disabling? Its not like if I had a choice I`d choose to be in this situation. I`ve lost all(any) self respect I had. How anyone could think I`d choose to live like this if there were any way I could I`d be doing my share and more. Guess I`m just feeling sorry for myself. Thanks for the oppertunity to vent my frustrations. I hope and pray better days are ahead for all of us. M50

[Dude]

Turn it around, brother. How lucky you are to have a father who is alive, a father who can do that kind of labor, and a father who loves his son and knows he is having difficulties and wouldn't bother him to mow. It's okay, and it really is nobody's fault.

Social Security and other government offices are really not there to help you, they're there to take from you. When you ask for any of it back they get constipated and make it their policy to refuse your application and many follow up appeals, until you contact an attorney who does this for a living and will take your case on contingency. And even then you have to have all sorts of proof, documentation, lab results and anything to show your illness is keeping you from working ANY kind of a job. My attorney thinks I have a really good case, and my Hep C along with injuries from an accident are truly keeping me from working. Don't give up brother, just keep on them about it, and find a good attorney.

Nobody here wants to go through all this madness, and surely didn't get here by choice, just like you. But we all are going through the same things as you, and some of us suffer even more, with cancer, diabetes, lupus, and a list of other ailments, have lost spouses, children, friends, jobs, homes, and all kinds of things we never would have allowed to happen if we weren't thrust into this terrible place we find ourselves in now. The good thing is it won't last forever, and a cure is on the horizon. Some of us may have to lose a lot more before we get out of this mess, but at least our prayers and hopes are with us, and with the latest news of new med's going through trials now, we have renewed hope of finally getting our lives back. I only hope that we all can keep drugs, alcohol and other bad things out of our lives after we've cleared the virus, and that we keep a good diet and healthy lifestyle at the forefront of our lives, teaching our children to do the same.

Hang in brother, be tough, and relax for now. There's really only so much anyone can expect from you, and you know that better than anyone else. If you went out and mowed you might just screw yourself up worse. Talk to your father and ask him to only mow when it's cool out, like early morning or just before dusk. He already knows that you'd help if you could.

God bless.

[M50]

Hey Caddude. I know I have it alot better than some. Also will know more about my issues soon. Have 2 docs appointments on this Wednesday the 30th. First a renal ultrasound to see whats up with a large mass they discovered on my left kidney during a catscan. Then in the afternoon I`ll get together with my Doc handling the HCV. Since I`m in month 7 I`m hoping I`ll get tested to see what progress if any we have made sofar. I say if any because as a geno type 1 I know we normally respond better with the 12 month Tx. Say if you ever need any boat advice , navigation tips , or whatever let me know. The M50 formaly known as Capt. Mike .Thanks again for your kind and very helpful responses. This is the first time I reached out about this frigging disease. Couldn`t call in sick in the Merchant Marine during my 30 yrs there. Keep an anchor to the windward.

[SoFla]

Hey M50,

Sorry you are having a hard go of it, but if is any consulation, you are not alone.
I'm at week 15 and came to realize from the onset of treatment, this year is about me and healing.  It kills me somedays lying here watching my life go by, but in reality, how often in life do we have the opportunity to spend a year taking care of ourselves.  We are so preoccupied with being productive that we sacrafice our health and families so we can get things done!

The heck with that, this is your time to get healthy, and your day will come for you to go out and cut grass to your hearts content.

Keep in touch with those of us going through the samething and I guarentee you will be fine.

Regarding SSI, I've heard of plenty of persons who have qualified, but I don't have
that information right at hand.  I co-moderate a list called hepatitis clearing and clear which is made of alot of fabulous persons with a lot of personal and professional information.
Come over and meet lots of us who talk about the trials and tribulations of treatment, are on top of all the latest breakthroughs and clinical trials.  It's a great bunch with fabulous humor (which is imperative for healing).

Good luck my friend....Davis

[SoFla]

PS Here's the link if you're interested


http://groups.yahoo.com/group/HepatitisCLEARINGAndClear/

Take care...Davis

[Dude]

Thanks Cap'n Mike, I'll remember that when I need answers to seamanship questions! I used to be a commercial swordfisherman for about 3 years and had a blast out there in the Atlantic. Hard work, but great times. I love the adventure the sea has to offer. Hey, is there any way you could look for a riding mower for the old man? If you're like me you can't afford it, unless maybe you could sell something and get one for him, or just a self propelled Snapper maybe.

SoFla, how've you been since your rage issue posting here? Is the little lady any more understanding? Have you spoken to your doc about antidepressants? There are tons of us who end up having to take them to maintain an even keel. This is a tough time for us all, so please don't be embarrassed to follow up with anti depressants. It's far better than ripping up a relationship with rage.

Brothers, I know this is going to get a lot better soon, you mark my words. Take care and get that rest your body is screaming for. Like SoFla said, we've spent our lives chasing the dollar, neglecting our own needs of rest and destressing. Lets take full advantage now while we can... rest when you feel the need. Keep focused on faith and healing.

God bless.

[Gee Oh]

Ditto

[M50]

Thanks for that info So Fla also the support. GeeOh I guess that ditto means your also struggling at this time.Sorry to hear that. Caddude I had a feeling you had a little salt mixed in there with the HCV and the rest. While I never swordfished I ran a little ship acting as a tender in Alaska. Middle of the winter based in the Pribaloffs(sp.) and Dutch Harbor. I just want tothank you one and all for responding to my posts. Maywe all find better days ahead. M50

[Geo]

Hey there Capt. Mike.
  What fond memories of my days as a scalloper you have reminded me of. I mean out on the ocean you really get a glimpse of God. The sunrises and especially the sunsets always took my breath. Of course there were the storms, and then, Evil was upon us. We knew, after getting really horrified, that it was up to God if we were to survive. And we did. Now is a different kind of storm for us my brother. We will, if we can once again face the wrath, let go and let God, beat this thing.
   My big awakening, years ago, came after reading this bible verse, " with but a mustard seed of faith, you can move mountains and heal others." I remember thinking, after reading this in my bible, I had huge amounts of faith in God. Only I wasn't healing people at the time, so I asked to be shown 1/10th of that smallest seed, the mustard seed. Wow, did Good things ever start to happen for me after that, beyond all logic and beyond all reason. And now, Finding out what has been wrong with me for all these 20 plus years is also a blessing, cause now I know what I am fighting, and I am fighting for my life. And a problem recognized is half solved.
   I have been in bed too and am on my 7th month too. I have to force myself to move though, cause the meds will be worse if I sit/lay around all day, feels like I’m going to die. I go real slow though, cause someone said it is way too dangerous for us to work or move like we were capable of. We have some kind of increased risk of heart problems so; I am taking things real slow personally. And someone said to be careful of the sun too.
   I was so sick for the past few years and now I know why. I am feeling much clearer at night as the meds are clearing my metabolism due to me moving around as much as I can every day. It takes me till 11am or so to be able to drink my OJ and banana and Soy Protean mix. If I can sleep walk for a few hours, then my appetite builds and finally I am eating again and that’s good. Of course then it is off to bed at night for the bad dreams to inhibit my sleep. My legs have gotten so weak lately I still find it hard to believe. I think not moving about, hiding from prying eyes has made things way worse.
  My mental awareness has intensified too thanks to all of this. I get so paranoid it is unbelievable. I can hear the hatred being thought my way, as well as the love. Thank God to my real friends for saving me from giving up, and to this message board for the honesty. As the ones eaten up with envy have practically driven me off the deep end. I get to feeling very lonely listening to the hatred being thought at me.  
The truth is, I am very grateful to all, life can be good again, and I am finally beginning to see again, as the virus itself had practically rendered my ability to hear non-existent. Just please be here in the am and, be willing to remind me thru another day on the wild and wooly roller coaster ride we call  “recovery.” Or in the evening after the morning crew has given up, please show me a little love cause, I am experiencing so much guilt it is un-real.
 Thank God for your Dad. I think he is functioning thru his strong spiritual principles and he is willing to fight for you till you can finally get in there and begin to live and fight once again.
     When I went thru recovery in 1990, I had this same mental supersensativity. Had paranoia. My closest friends at the time were lying to me about what was going on and that lying was making me way worse. So to the Nurses whom say the sides aren’t bad, and whom threaten to withhold this our life-saving drug from us, you are making us worse.
      This is a temporary situation. This too will pass.
                   Geo

[M50]

Geo I want to thank you for that inspiring message. Your right about that feeling of being close to God out there on the sea. I miss it alot. My brothers still working as A.B. on the last boat I ran. He called tonite and it really got me to thinking when he said he was headed for Ponce, P.R. in the Mona Pass. I thought of the many trips I`d made in that same place. Thats one of the things that I find so funny about them turning me down for disability. Why would I want to collect that if there was any way I could work. Not to mention I would make more in two months of sailing than I would in collecting disability for an entire year. I`m getting some tests done in a week and then at least I`ll hopefully know a little more than I do now. Since I`m a geno type 1 I should be staying on the meds for 48 weeks. You all take care out there. Your friend in recovery Mike

[friarboy]

Hi,
I am in month 15 of treatment and this is the second time I have tried treatment for my HCV.  I have type 1 viral strain which is difficult to treat.  I have been on the 3 time a week shot, the once a week shot and now I am on pegasys plus of course the ribovirin.
I can really relate to how you are feeling.  I am still working, but doing a very poor job of ot lately which is really frustrating because I can't concentrate, have poor memory, and severe depression most of the time.  I just received my annual evaluation which was very poor (they used to be excellent. I don't even feel as though I am the same person I was a few years ago.  The only thing that keeps me going is the hope that either this or a new medicine will work for me.  Thanks for letting me vent.   :-/