About seven months before I started treatment, while I was waiting for my first PCR results etc and waiting on the biopsy appointment, I had just started into a relationship with a guy - his idea - who knew all about my Hep C and said he would be there for me as a friend regardless if the relationship didn't fly. His brother had died of AIDS, he said he knew what he was getting into and he assured me he was doing this with eyes wide open. The clincher line from one Scot to another .. "Scotsmen don't run from a fight" he assured me. Well just before I got my test results he was gone. He cut off all communication and he was gone, tucked his kilt between his legs and hightailed it. That put me into much more of a tailspin than I would like, because of the way he did it, the timing of it and it just hit me harder than I would have liked, maybe because it was a very vulnerable time with all the results about to come in but not having any answers yet.
I guess as a result, and maybe I would have done this anyway but this really brought it home to me, I decided that if I was going to go through treatment, I couldn't afford to depend on anybody but ME. That people would make promises but they either wouldn't or couldn't necessarily keep them and even the best intentions would not or could not necessarily be fulfilled. I've pretty much stuck with that. So far it's served me pretty good. If people offer help and support, I'm happy to take it if I need it.
Lately, I wonder though. I notice that I circle the wagons around me and distance myself from anyone who threatens to shake the solid ground I'm on.
For example .. I went into emerg on a Friday evening to get my hgb checked...I'd had a day of being totally "off" .. really really out of breath, vision kind of blurring in and out, feeling lightheaded and just .. weird. My HGB had been floating between 10.3 and 10.8. First I wanted to know that everything was okay and if okay, I wanted a baseline hgb check so that I could monitor over the next while til I got to my next doc appt. One of my girlfriends asked me how things are going and I've been just giving her generalities so she asked some very pointed questions and I eventually told her about the trip to emerg and the low hemoglobin. Well ... her response ended up making me feel like I had over-reacted by going into emerg and she was surprised that they would see me and asked me what their reaction was when I told them what I was there for. I assured her that the doctor was great, got my labs back within an hour and gave me a copy of them without me even having to ask for them and he reviewed the numbers with me. She was surprised and I just wanted to smack her for making me feel like that. She asked me if I was taking iron for my anemia and I told her no, that my iron levels were actually elevated and it wasn't an iron problem. So she asked me if they had not advised me to eat more red meat? Hm. I told her I was taking Folic acid instead even though the impact of it was potentially zero, that it also could help...that there was little to do until the anemia got to a danger period other than modify activity, that this was medication-induced anemia so a little different from other forms of anemia. I bit my tongue from saying "a Masters Degree does not make you all knowing".
People say things like .. "you can't really expect the treatment to work THAT fast" .. when you know personally that the faster the treatment shows results, the better your chances are. So .. yes .. we ARE hoping for fast results.
And the "stay positive" people drive me nuts, the ones who think that having a bright sunshiney cheery attitude will make the difference between if the drugs work or not. Attitude definitely makes the difference on if I stay the course or not, for sure and how I handle the side effects and the various rigours of treatment. But not on how the drugs work. I'm positively sick today .. but I still have my positive attitude.. does that count? :)
It's like ... do they think you haven't researched this to DEATH....that you don't know what you're doing, that they need to tell you how you should handle your treatment? When they know little about HCV and even less about treatment for HCV? They don't ask, they TELL you. It's insulting. And what they tell you is WRONG.
So .. I find that I really only talk about my treatment with people who are going through it or people who ask rather than tell. Those people are gold...the ones who ask, the ones who don't over-react if I'm nauseous or tired, who understand that's my "normal" right now. My dad asked me if I didn't think it would be better for my daughter to move home..when I explained to him why me being on my own worked better for me, he understood and accepted that. I appreciated that he asked rather than told me what was best for me. My daughter will call and say "you sound tired tonight, Mom" and I'll go into damage control mode and say "yes, I'm tired but I'm doing okay! This is all part of it.. " and before I get any further, she'll say "it's OKAY Mom...I know you're going to have days like this and I'm not freaked out by it".
I know the tellers only want to help .. and somehow it doesn't help. I know I should appreciate that they want to help but it has the effect of making me want to distance myself from them so that I won't be shaken from doing what I know needs to be done here.
I don't want to alienate people with good intentions. How do you handle that part ... the people who want to help but make it worse?
AND...I don't want to alienate people in general but I'm afraid to let anyone get TOO helpful because I don't want to lose my "edge". I'm pretty independent anyway but seems I've gone into a bit of overdrive that way since starting treatment. Does ANYONE relate to that??
The term "fair weather friends" never resonated so much as when I treated and my view and expectations of people have dropped significantly because of that experience.
The difference now is that shallow and unthinking comments no longer draw a reaction while on the treatment drugs they often drew rage. Mother Teresa might even have given an unsaintly finger on these drugs, so don't be so hard on yourself how you are reacting. It is the drugs.
As to your question about how not to alienate these people, I wish I had an answer because I alineated people well during treatment.
Those who I wanted (or needed) to remain in contact with I ended up apologizing to because they didn't have the insight or capacity to apologize first. And interestingly, none of the people who knew I was treating ever brought the subject up once it was over. Even if I alluded to something related to the treatment, they literally look away and change the subject. People want the the healthy, "fun" JMJM, not the one who was treating.
Treatment is probably one of the toughest things you'll ever do. Even if you were to relapse and had to re-treat I would imagine that treatments hold the potential for getting shorter. Even if you were to re-treat, you would have had the past experience.... and acquired mental fortitude about what you are now doing. I just want to drive home how tough this treatment is. It may be the worst thing you've ever done or will ever do. It's long, the sides are tough, you are working, living alone. It takes a kind of drive and fortitude and single-mindedness to stick it out.
In this case you are also in a trial. It's blinded and you are being kept in the dark (I guess that's redundant) about certain aspects of it. You don't know if it will work and are a skitch concerned about not only the efficacy, but also the safety of what you are attempting. In the light of the past few days and the bump in the road you likely also have additional stress about your TX since there have been reports that the trial drug use has been halted. My point is that an already very difficult treatment is made a bit tougher by being in a trial and even a little scarey. You just have to grant that this treatment is the lead thing right now. It is going to get all your focus and attention. For a while people are just going to have to be peripheral.
I think you can train people a little about your comfort levels with your treatment. I have a friend who is dying of cancer and I've done the exact same thing that you've described. : ) I've "interferred" with her TX, by asking questions, questioning the doctors choices a little and making my own recommendations. (damn; I'm bad, shaking my head : ) ) I finally stopped doing it but was kind of a PIA about something that I may have been right about; they had her on coumadin (a blood thinner) and she kept getting anemic and having to go in for transfusions. Once she was crawling on the floor and barely able to breathe. DUH!! The blood thinners kept her bleeding through her cancerous stomach. Miracle of miracles, they took her off the coumadin (also used as rat poison) and her rate of internal bleeding slowed, as did her need for transfusions.
My point...... I actually had a point...... is that as a person on the outside......I was caring....concerned..... but actually powerless about what type of treatment my friend was getting. I could voice it to her but she wasn't able to really direct the doctor. She had to get really sick before he corrected the treatment. Maybe they were right all the time and knew exactly what they were doing, but I sure as hell couldn't tell that from the outside. I was worried that some inattention was going to injure my friend.
You have loved ones who are also concerned about you. They too, are powerless about your TX. They also carry with them a lot of ignorance about HCV, it's treatment but they still care about you and are just as concerned that you are being taken care of (too bad we can't underline words here). They may also figure you for a "type A "who won't ask for help. : ) I think that they are just trying to find the area that they can float.....neither being too close and interferring or too distant.
You know...... I've read a few posts from people who said that their friends all dissapeared while they treated. There's never any magic solution. Some times we need to be left alone, sometimes we need people near us. That's their treatment related PIA; figuring out when and where that comes into play. : )
It's a big thing, chemotherapy. It's huge. It takes a lot of focus and commitment. It takes its toll even on long term relationships. Sometimes having your wagons circled is the correct thing to do. If it helps you weather out this storm....for this passage of time, then so be it. It's a finite period of time. It will pass and so will this temporary discomfort with symptoms, relationship problems, and balance in dealing with well meaning but loving friends.
Without going into a long detailed story I can tell you boy can I relate. Ive lost almost everything Ive had.....just be good to yourself and have patience with yourself.
Ive lost job, friends, and alot more. Your lucky to have family I am alone.
People can be vicious when it comes to HCV.
Its unfortunately the way it goes.
Rememeber what hurts you, hurts you and NO ONE ELSE.
You will feel better and things will come together.-A situation that only FEW can possibly ever understand.
I opted not to tell anyone but my immediate family, I left my friends and coworkers out the loop. I just sort of slowly disappeared into my own little tx. world for 96wks. Thinking back i feel i made the right decison, what bothered me most was the stares i recieved from my changing physical appearence(hair & wt loss). No one ever mentioned anything just looked and wondered, I probably would have started crying if anyone would have said anything. My boyfriend tried to act like nothing was wrong, although i did tell him prior to starting tx. that maybe he should move on b/c i was told i had 5yrs if tx didnt work,and liver failure is not a pretty death. To make a log story short 21mths svr he is still with me, now that i look like a normal human being again, friends and coworkers are not tip- toeing around me. Everytime i go to the doc for follow up, everyone now ask if i am ok,and they are relieved when i say iam fine. I still havent told anyone what was wrong with me or what ive been through, but they all knew i was ill,and each supported me in there own way while i was suffering through 96 wks of SOC,either by calling and asking if i needed anything, keeping me up on what was going on in my circle of friends, coworkers picking up my slack at work when i was looking really bad,but never questioning me. Although i tried to isolate myself they wouldnt let me....Leah
Not because he wasn't there for me --- or because he was afraid of me...
It's because he did EVERYTHING right.
He left me alone --- dang it---where was he?
He did what I said ---- what? No arguments?
He tried to hold me (ONLY) --- You're touching me...
He cooked me food ---- OMG - that's going to make me barf...
He looked at me from across the room --- Why the hell isn't he holding me?
He tried to talk to me ----- Why are you making noise?
He tried being quiet ---- Why aren't you talking to me?
He bought the groceries --- how come you didn't get the sprinkles for the ice cream?
He filled up my gasoline --- Did he use premium gasoline --- NoooooOOO.
He did my laundry ---- did he use the right laundry softener --- it's so itchy.
He tried to clean the house --- it made too much noise - I couldn't think.
He turned up the heat ---- it was too hot
He turned down the heat ---- it was too cold.
My friends --- they just got tired of me saying --- sure, we'll go out --- when I feel better... But as we all know - you don't feel better for a LOOOONG time...
And because you've just gone through something - if they knew you before hand ---- they really don't wanna talk about it with you --- they just want you to be the same person - but because you've just gone through a completely life changing experience ---- and you haven't seen them in a long time --- and maybe... just maybe you feel a little envious of their health....
I dunno LOL!
But I believe that keeping yourself positive --- even if it is positively batty --- then at least you've given yourself a happy road, instead of a sad one.
And people --- who mean well --- but don't have a clue ---- my hubby taught me a lesson from when I was sick...
THE YES DEAR --- SYNDROME...
Just nod your head and try not to laugh.
Don't get upset at some of the bizarre --- absurd or rude things people say or do....
Just nod your head --- and DO NOT --- I repeat --- DO NOT LAUGH OUT LOUD!
It's not allowed.
Every time you come across someone that it is easier to just nod your head and say "YES DEAR" to ----even if only mentally... remember --- DO NOT LAUGH - they don't understand it if you laugh at them.
My hubby taught me that all through the chemo...
Dude --- learned to say YES DEAR --- very well with me demanding... everything... He was pretty awesome.
And while I didn't lose him - I'm sure that there were times he certainly regretted marrying me.
Wow, Sweetie, does your husband have a brother?.... JK... (sort of). I was just wondering if you can actually SEE his halo or if he just looks like a normal live person?
Any which way, would you two please hug each other for me. And, pat each other on the back too, (him for putting up with your bitchiness, and you for cowgirl-ing up about it). Love and more hugs, QAnt B
Howdy there, NS Spice girls. Dill weed, here, Ya know, having Mom around has been a blessing, (and a curse). Mom's a blessing for: her unconditional love, driving me to and from all the numerous Dr.s appt.s , taking me to get whatever I want to eat, at the store, or a restaurant,( when I feel like eating out). The curse part, is when she says insulting things, and I can't even call her on it, she's never wrong, or at fault, or has alterior motives for some of the crappy insensitive things she says, or plays drama queen, that sicker than thou thing. Any how this is my dear sweet mom I'm talking about here. I figure if I can't change the situation, and nothing I say or do will accomplish more than to tick her off, or put her on sulky non- verbal pouting binge, then why not just say, "I'm a little dizzy, I need to go lie down". Or, "I have a leg cramp I've gotta walk off", (and limp out of sight). "I think I have diarrhea,",(while running to the bathroom), also works.
So, when well meaning friends and family try to put their 10 cents worth in, just listen, say, "that's interesting, I'll see what my Dr. says". And, "My dr. doesn't even want me to take a vitamin without clearing it with him first". Iron is definitely a no no for HCV ers. Should we become anemic, red meat is also not a no no, (other than rarely). Hepatologists, give their patients Procrit, or neulasta, (when indicated for anemia). These are known as 'rescue drugs' and won't be administered in some studies, (Protease for example). You may want to tell your 'friends', that eating liver, is also a bad idea, and not so good for your liver.
There are times, I don't feel much like smiling back at Mom on numerous trips to the kitchen for ice water, but it's not her fault I have HCV and feel like 'a cold oatmeal sandwich', so, I give her a smile and a nod, and say "I'm o.k., cause she can't do anything about it anyway.
There are plusses to doing this Tx flight, SOLO. Many hugs, ant B
But his Halo is held up by those pokie horns - yanno?
He --- like all of us --- has his good sides and his bad sides... Man --- my mother NEVER told me that men like to "toot" under the covers and play turtle..... (find the hole! find the hole! find the hole to stick your head out of!!!!!!!!)
Of course... Once I caught on to that game --- on TX --- he was a SORRY loser... LMAO --- paybacks were certainly fun.
Still all in all - he's been a good hubby. Don't think I'd give him away just yet... LOL!
geesh, this was a long thread. Can't really remember the begining.. I'll look back in a few. You 2 crack me up!!!!! Does that gas ever go away?
Trish, it sounds like you have gone thru a lot in a short amount of time, I guess we banded the wagons around, didn't have our usual October bonfire, which is a lot of work. We still did the Christmas & Thanksgiving dinner. I guess my stepkids could care less about me cause they never stopped over or called but that is another story. A few of my really good friends would call regularly, my mom called, my mom-in-law called, my brother didn't deal well with me being sick but he called a lot & I puppy sat his puppy for a few weeks. I have "horse friends", they called I also have "dog friends" they called.
I guess you are going to do what is best for you & I am wishing the best for you.
I can totally relate to so many of your feelings. Tx is lonely whether you have a partner to help or not. Not to say that having someone by your side doesn't make things a lot easier---it does!
But tx, like illness, childbirth and dying, is an isolated event.
People can try do their best to make you more comfortable, or turn away because what you are going through makes them uneasy....but no one knows how you feel.
It stinks that we take so much time to learn everything we can about this disease/tx, and then can't transfer the knowledge we have to others in a short converstion. I want to scream when I have to explain things to the PCP's nurse. It's frustrating that they don't get it and don't understand.
Your friend was well meaning, but didn't have a clue. I sometimes feel like that when I'm talking to my doctor, too.
Your Dad and daughter sound as if they would do anything they could, but don't know how to help. You've drawn the wagons around you so tightly they are afraid to cross the barrier you've erected. They would probably feel better if you would let them in a little...
I put friendships on hold. I found out that people really didn't want to know how I felt.
I changed jobs and didn't tell anyone I was on tx.
I pulled the wagons in closely and just waited it all out.
The good news, Trish, is that this will be behind you someday. I'm not telling you anything you don't know, but I will tell you this: I finished tx a year ago in March and I feel like I'm still recovering.
When I weed the neglected flower beds, I think, "I'm reclaiming my yard". When I file, throw away junk mail, and clean out my closets I think "I'm reclaiming my house". When I spend time with family and friends I think "I'm reclaiming my life."
This is something you are doing well, and doing bravely. Only those that have been through it can really empathize. This place was my lifeline.
Well...that was all certainly food for thought and I appreciate so very much the input.
Jim, thanks for making me feel normal...whatever that is these days. :)
Eric, my friend, you nailed where I'm at: "It sounds like you are striving to strike a balance between isolation and reasonable expectations of other people." Yes, have been striving for that from the beginning and lately I have been feeling like I'm losing my balance and need to get back on kilter. I felt I'd get the best input on that right here and that has certainly been the case after reading all these posts.
Willy, you are always a sweetheart. You put so much thought into your posts and they are filled with understanding for people in general. Much of what you said resonated with me on various levels. This in particular, however: "I think that they are just trying to find the area that they can float.....neither being too close and interferring or too distant. " I think you nailed it there too. I have been on both sides of the coin....also trying to find the area I can float and it is not easy. I need to be more understanding of what THEY are going through also. Although this is about me, it's also about the people who care for me. They're important to ME. I've taken a few deep breaths..and coincidentally talked to a friend who confirmed that she's been trying to find her "floating" space as you call it. I think you are right when you say I may need to help them a bit with that. And then there are others who I'll just have to let float away..thankfully, there are not too many of those.
sldb...thanks for your input. I know some take the approach you've taken and it's worked for them also and it's really what works for that person. I do have one friend who takes your approach in her own life, so I simply tell her in particular less about my own life. I take my cue from that. Most of my other friends, our relationships have been hallmarked with the tendency to tell each other everything, warts, faults and all, we are deeply honest with each other. However, this is new territory for me and between me and them, I think we are both finding our way. I am so glad that things worked out well for you. We each have to do what is right for us, don't we.
Ladybug...."Your Dad and daughter sound as if they would do anything they could, but don't know how to help. You've drawn the wagons around you so tightly they are afraid to cross the barrier you've erected. They would probably feel better if you would let them in a little... " Close.. very close. It's mostly my friends I've erected the barrier with. If they decide to come to the barrier, okay. But I'm tucked safely inside of it until they do and even at that, it's almost as if they need to have the secret password.. Only..as Willy said.. they don't know WHAT to do. So..with some of my friends, I think you are right. I have pulled the wagons just a wee bit TOO tight and I guess that's why I posted...didn't know how to quite get my perspective right. Thankfully all of you have been terrific in helping me sort that out. :) Thanks Bug.
Charm.. you have always been my superhero, Charmgirl with the cape collection. You keep up your humour and your spirit and you keep fighting. Just remember...you are not alone. You have us. Not the same, I know, but you have us. To be honest, my best support is right here. My kids are great but I only want them to bear so much. What is best for ME is that they keep living their lives. In this place..we can tell it like it is. I don't know what I'd do without all of you.
Elaine, thank you for your thoughts and your words. Appreciated. It is not as hard as you think to do this alone or maybe I'm just that stubborn..lol :)
Meki...lmao ... should we submit your husband to the Pope for potential sainthood?
Wassup...hugs to you and your mom. :) And yes, plus sides to doing this alone.. pluses and minuses to everything so I prefer to focus on the pluses and manage the minuses.
GSDgirl...thanks for the good wishes. I'm reminded of my motorbike friends who are currently fixing up my Ninja at no cost to me so that I can focus on my treatment. Guess I got a little stuck in the parts that are frustrating me and just needed a little help at getting the stone out of my shoe.
Thanks everybody. Whewwwww!!!! Onward and upward yet again. :)
You're right. your friend is stupid. Its a totally different kind of anemia. You You have hemolytic anemia from the ribavirin. almost 100% sure, sometimes people have marrow suppression from the interferon, but its usually the red blood cells dying early, basically being destroyed by the ribavirin. Iron won't help, and too much iron in your system is bad for the long term health of your organs.
I say this as someone who had a tough time with treatment, so keep it in mind. But, why not let your daughter move home and help you? My son was here for all but the last two months of my treatment, and God I wish he'd been here for the whole thing. I wish I had him now, even post treatment. For me, the misery kind of compounded over the course of my treatment. I found I needed more and more help as I went along. I couldn't have made it without help towards the end and I didn't even go a full a seven months.
Well, my friend is not stupid, far from it. She's uninformed about HCV, trying too hard to help maybe and in the wrong ways. Her intent was positive. And after the frustration passes, that's what I need to remember.
You had quite the difficulties, alagirl. You certainly needed him there. I keep the option open with my daughter. I don't need someone at home right now but she'd move home in a flash if I needed her. Right now I'm okay but there's still a long 36 weeks to go. I'm stubborn and independent...but there's a limit to that, even for me. So the option is open, I'm just hoping I don't have to exercise it.
Just had this little mental roadblock to sort out cause I notice I'm perhaps isolating myself a little too much and striving to strike a balance here.
I think there is a tendency to isolate ourselves when we are hurting. TX seems to bring out this trait. I find it very difficult to talk to poeple about TX who are not going through it or have done it. Even though there are good intentions, they usually just can't quite understand it.
Hang in there, Trish. I hope you get the support you need from family and friends.
Well, my friend is not stupid, far from it
I meant stupid in the other sense of the word ;) She has a master's so she isn't stupid, but its wrong of her to act as though she knows more than you do about your own disease. My girlfriends and I call that, "acting stupid."
And I think you do have to depend a lot on yourself in this disease, just be sure that you don't get too stubborn about accepting help if you need it. And realize that the treatment drugs can make it a little difficult to assess properly sometimes the point at which you need it. So if a lot of different people in your life tell you your at that point, sometimes you have to listen to them.
At the beginning, it hurt my pride a great deal to accept help, but then I go so sick so fast I had to accept help. I still have a problem asking my grandmother and my dad for help and sometimes I have to have it if my best friend is working. My grandmother is pretty fed up with me being sick. The other day she said, "When is this ever going to end?" It hurt my feelings a lot. Particularly since they've only come in on the last couple of months of things and haven't had to do nearly as much as either my son did or as my best friend has done with a full time job. Family. Gotta love em.
ahhh..THAT kinda stupid. :) I hear you on all the rest of it. Good words and I've taken them in. I do need to get myself through this most of all but there is a point that it will be "acting stupid" if I don't accept help...right? :) I'm trying to understand where that is and I'm getting there. I think that's a normal process for all of us perhaps.
Brent...thanks for the good words both in your comment and elsewhere. I do have the support of family and friends ... just trying to make sure I don't lose my "edge" at being able to be independent and not be putting too much on everybody else and also trying not to let anyone else get me off my game, if you know what I mean. I find the same thing...hard to talk to anyone else about this who isn't going through it .. although, I'm finding ways. When I tell my friends I cleared the virus, they've been thinking that's it, I'm done, cured, over. And I tell them.. "well, it's more like the tortoise and the hare. The hare figured done deal and eased off but I've got to do this like a tortoise and slow and steady keep running the race til the finish line. I have to get to the finish line. So I gotta be a tortoise, not a hare." and funny..they seem to get that when I put it that way. So I just have to keep thinking up the right allegories to help me explain this maybe...lol :)
Seriously though...I'm muddling through pretty good...thanks to being able to come into this forum and my very best support is right here. That is priceless to me.
Didn't I hear a tortoise or turtle mentioned earlier in the thread inconjunction with the universal gas laws. (Yeah, I go right for the highbrow topics). When the temperature of a gas in fixed and the pressure increases, the volume must also increases (Boyles Law?) This additional volume of gas is what sends ones partner looking for a hole in the covers.
One more reason that a dog is an indispensible utility for getting through TX!
Okay! Now I understand what you were talking about, Meki with "tortoise in the hole" and all that ... whew!! I'm not even going to begin to tell you what I thought you were talking about .... I gotta admit I'm relieved .. but just a little worried about, um, me. :)
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