Re: Ramona, Cheryl, PEP TALK TIME... Trudy you read too.. ...

[Guest guest]

I love you Teri!!!! Thank you so much, I read every word and I will save this email to read when I am losing my mind again.

Huggsss

Cheryl

In a message dated 10/17/2010 5:12:37 P.M. Eastern Daylight Time, theresagottlieb@... writes:

Okay, I'm glad I kept reading before I responded to anyone... I'm going to address you both here (and anyone else on treatment) basically because I would be saying the same thing to both of you in different posts.Ramona and Cheryl... and the rest of you too!First off, I want you to know that I'm going to cry right along with you. I actually have tears in my eyes now. You have no idea how much I truly understand where you are coming from. I threatened to quit treatment at least once a day. I know this because my husband has recently reminded me of it. Every Friday I contemplated giving myself that damn shot. I hated those shots more than I hate my ex-husband... and trust me, that's a pretty strong hate. Every Friday morning I would wake up feeling not so bad.. then I would realize I feel okay cause it's been 7 full days since I gave myself a shot and I have this little window of feel almost normal time. Reality check. I felt good cause the interfuron was on its last legs and my body needed more... crap, another shot. I wanted to quit all day every Friday. The rest of the week I was too sick to be carrying on about quitting all day but I managed to get it in there at least once. Most of the time my outbursts about quitting were passed over with a "yep I know" but on Fridays that "yep I know" wasn't enough. That's when the husband and kid and my neighbor had to bring out the big guns. Death. That was my option. Death. Not the possibility of death, the certainty of death. I was at a place where if I didn't do that nasty horrible treatment I would need to be placed on the liver transplant list... and I was also told that I would die waiting for a liver. Those livers aren't easy puppys to get. In other country's yes. Here, not so much. For me, dying wasn't an option. I plowed thru.Now, having said that, I'm gonna say this... I am the biggest wimp that ever walked this earth. I HATE PAIN. I hate feeling bad. I was sick and tired of being sick and tired for 48 weeks. I bitched, I hollered, I moaned, I told anyone in earshot that I was feeling like hell and couldn't take it any damn more. I wanted out every damn day. So you know... some of you may, some of you may not... My doctor's protocol for Hep C treatment is extremely aggressive. I took 14 200mg Ribavirin a day. 7 in the morning and 7 at night. I took the maximum dosage of Interfuron that I could take without it killing me. It was 3 times the normal amount for someone of my weight. Think I was sick? I didn't get out of bed for a total of 50 weeks. I crawled to the bathroom half the time. I was so weak that I tried to make a sandwich one day and it took me almost 4 hours to complete the task... I kept having to stop and lay down. By the time I got that sandwich made, the bread was stale, but I ate it anyway. I didn't have a computer connected to the internet either. I didn't get that til the following year. But I did have something that I'm not hearing a lot of you say you have... I had a support system in place. Here is how this worked... My support system had a structure and I don't know how this fell into place but it did. At the very top of this support system was my doctor. You'd think I'd put my husband here wouldn't you? Nope, it was the doc. Right next to him was his nurse . Let me tell you what these two did for me. From the very beginning, even before the first shot, I let them know I was scared to death. They both promised me that they would be there with me for the whole thing. promised she would hold my hand. She did. She called me every single day of the week.. weekends too. Sometimes more than once a day. She even called me when she was on vacation in Hawaii. SHE CALLED ME FROM HAWAII WHEN SHE WAS ON VACATION WITH HER FAMILY! She never let on that she was on vacation much less that she was in Hawaii either. Every day without fail my phone rang and I heard 's voice on the other end. She was my angel. She promised to hold my hand and she did. Okay, hang on.. gotta get my tears in check now. Crap, you guys got me crying.If you guys haven't read Steve's book.. he talks about this very thing. The support from your medical team. I think Don may have it in the Library but if not, I can send it to you. I have it saved on my computer. Your doctors office offers this kind of help... those nurses are trained in dealing with the emotions and the roller coaster of treatment. Let them know you are needing support and trust me they will support you. If they don't know you are falling apart at the seams, they don't know to help.... Ask them for help, they will step up to the plate, I promise.Now, the next person on my support team was and still is my husband. I know some of you aren't feeling the love there right now and I can empathize with that. I've been married twice. The first time I was 21 when I got married and the guy was a jerk. I stayed married for 15 damn years. That relationship was abusive. Physically, mentally and verbally. He got me from all sides. During that time my medical issues were never important.. only his. I am only telling you that to explain how different Hubs #2 is. I have been a princess on a pedestal for almost 12 years now. I am married to my Prince Charming. Prince Charming, however, is not without flaws. Men, as a rule, want to be able to fix everything... They want to be able to make everything better. That's how they operate. You being sick.. they can't fix this. They see you feeling like crap, not caring about how you look, not able to eat or drink enough to sustain life and they want to fix it. They can't. They also cannot accept that they can't. That's when they walk away and go watch a game with the guys. Don't fault them for walking away for a minute.. They need to do that. If you could, wouldn't you walk away? Unfortunately, we can't walk away from our side effects, we can however take how they are reacting personally... DON'T. Please don't. Give the guy some space and let him breathe some clean air. If he wants to go for a ride on his motorcycle, tell him to enjoy himself for both of you and once treatment is over you'll be so happy to go with him. Bruce had his moments of frustration. He still does. Our life has changed drastically since I got sick.. it's hard for him to adjust but he's doing the best he can. I'm sure your spouses or significant others are doing the best they can as well.. If you don't think they are... talk to them... calmly. Let them know how frustrated you are.. how sick you feel and how helpless you feel. Trust me.. talk to them. My son was very distant when I was on treatment... very distant. He moved out about 3 months before I started treatment.. I took it personally. I had no idea the reason he was moving out had nothing to do with me and everything to do with his girlfriend who couldn't make it financially on her own at the time... I had no idea that his moving out had nothing to do with me and everything to do with his credit. I had no idea her apartment was actually his apartment in his name because she had no credit of her own... he moved out. I started treatment without my biggest ally by my side. My son has been my life for the past 30 years. The sun rises and sets around him. Trust me it does! Most of the time, he can do no wrong in my eyes. I raised a good kid. I did it as a single parent. I am proud of him.. however, while I was on treatment the kid was invisible... at least from the start. I had no idea he wasn't calling Mom because calling Mom meant admitting to himself that Mom was sick. Mom could die. His sperm donor of a father has had cardiac issues for my son's entire life.. he had spent years worrying about his father until a few years before I started treatment when he wrote his dad out of his life. As far as my son is concerned, he has me and my husband Bruce but mostly me. He also has a little sister and brother that he inherited when I said "I do" to Bruce. At the time I was going thru treatment, Jake and Cady were in their early teens and my son was 25 so Ian couldn't run to Bruce's kids with concerns... Bruce's kids were scared to death too. My going thru treatment made my son face my mortality. He didn't want to. As long as he didn't see Mom sick she wasn't sick. That came to a screeching halt pretty quickly.. when I lost my hair right before Thanksgiving the kid felt the weight of my treatment... He called more.. came over a bit more. Then, in May, when I was about 8 weeks from finishing treatment, he moved back home.. girlfriend in tow. Boy was I happy. Ian and Chandra became sources of amusement for me. My kid has a crazy sense of humor and he used it to cheer me up. I'm lucky to have the family I do. I know that. CRAP I'm crying again.[i also had a few friends that hung close by me during all of this.. mostly my next door neighbor. She did something for me that til today impresses the hell out of me. She's a school teacher. She came up with the idea for me to get a calendar and track my shots... Okay, this was before I had internet so there was no online calendar, nor could I get out to get a real one... Krissy went out and bought a couple of calendars. She marked my shots every Friday. Shot Number XX -- XX Shots Left. I knew every week where I was and I could see the numbers of shots taken going up and the number of weeks left going down. What I didn't know is that she had the same thing marked on her calendar in her kitchen.. When I was feeling bad, she would tell me whichever number was better... she'd tell me I had 20 shots done already and how cool was that.. or that I only had 13 weeks to go and I could do that... She was always happy when she talked to me.. her life could have been crumbling down but when she talked to me or saw me, she was happy. God I love her for that. On Fridays, after my shot but before the side effects would hit, she would take me to get ice cream for us and her family and Bruce. Her and I would take a short drive to Dairy Queen and get Blizzards or banana splits for everybody then we'd sit in the back yard and have ice cream.. Afterwards she'd send me back next door to my house and to bed. But for a few hours.. life was okay. Now I had one more big helper during treatment.. my Anti-D's. My doctor had a rule. You had to be on Anti-Depressants for 6 weeks before you could start treatment. Period. No bargaining or compromising. You had to be on them for treatment. He monitored my mental health pretty closely. He gave my husband his 24 hour number in case I got weird on him... Oh hell, if my husband called my doctor every time I got weird... I can go there trust me I can go there! The doctor told him that if I started getting suicidal... if I started getting overly emotional or panic stricken for him to call. My husband was my doctors mental health gauge for me. He had to adjust my meds a few times.. always an increase too... If you are not on an anti depressant you need to get on one NOW. I can't be any more serious about that .. Treatment requires and anti-depressant. You can't go thru this without one. You will become a blubbering idiot. If you don't like the idea of an anti-depressant consider it a necessary evil to combat the effects of the damn Ribavirin and Interfuron. Those two drugs are powerful and have horrible side effects. If you can combat the mental part of it you are that much ahead of the game. Call your doctor tomorrow morning and get your anti depressants in order! Bump them up or start taking them. Please.Okay.. I think I just wrote a book again... Let me know if this diatribe I've been on here helps you okay? I just gave you guys all I have. I broke out all the resources. I cried with you I really did. Great big crocodile tears. I told you how I did it in an effort to help you do it too... and remember I am a wimp. I suck at being sick. I hate pain and I hate feeling out of control. BUT I DID IT. IF I DID THIS ANYONE CAN DO THIS. Let me know if you need a copy of Steve's book. I'm sure he won't mind me sending it out to you... I know a few already have it.Hugs,TeriNow I need a smoke! MOVE ON. It's just a chapter in the past, but don't close the book. Just turn the page.

From: Cheryl Herron <Honey1962@...> Sent: Sun, October 17, 2010 12:23:38 PMSubject: Re: [ ] Need to whine

Ramona,

I am having the same issues right now too. I am only on week 9 and have the redipen to do my shots. I am anemic (another 130 a month for procrit). I woke up yesterday with a rash over my entire body, I have been running a fever also and can't stop crying. I am so ready to quit, I can't do this anymore. I am not strong enough, I have no help, no one seems to care but this group and sometimes reading the words of encouragement are just not enough. I wasn't going to post how I am feeling, I emailed Teri for one of her pep talks. But honestly I am ready to throw the towel in, I don't care if I die from this awful thing. It would honestly be better than how I feel right now. I just want you to know you are not alone and I am struggling too and I feel your pain, god do I feel it.

Try to lay down and just rest and keep drinking, its what everyone is telling me.

Huggsss

Cheryl

[ ] Fluids

Well earlier this week I let the nausea take over ; I slacked off on fluids. Big mistake! Every inch of my skin is tender. My eyes burn so much that even with them closed I can't sleep. Too many issues to mention but they all go back to fluid intake. From now on fluids before food and even before meds!!( priority).I know, y'all warned me, but I am so hard-headed!http://facebook.com/people/andTrudy-Kinsey/1340460877 ""A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.comhttp://allrecipes.com/cook/TrudyK/profile.aspx

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