Aa
the freaking out phase
I remember when I was first diagnosed (who doesn't) and I remember how FREAKED OUT I was. there is definitely that initial freak when you don't have any idea what you are up against, even though i went through this with cancer it still freaked me out. I can sense the anxiety the need for information and the worry.
My 87 yr. old mom wrote on our kitchen blackboard, "dont worry" what benefit does worry have? I have to remind myself it does no good to worry no matter what. The only remedy for worry is to stop and breathe, have faith, any other ideas to remedy worry? As a matter of fact this blog is a good remedy for worry.
My 87 yr. old mom wrote on our kitchen blackboard, "dont worry" what benefit does worry have? I have to remind myself it does no good to worry no matter what. The only remedy for worry is to stop and breathe, have faith, any other ideas to remedy worry? As a matter of fact this blog is a good remedy for worry.
"There were moments in the ICU after my transplant when I felt so grateful to be alive that all the pettiness in life slipped away. No worries just joy.
Feelings, thoughts, emotions reverberate though our beings and the universe.
Lets not lead lives shaped by fear but by awareness and compassion! "
That's inspiring. Thank you.
Trish
Feelings, thoughts, emotions reverberate though our beings and the universe.
Lets not lead lives shaped by fear but by awareness and compassion! "
That's inspiring. Thank you.
Trish
Very interesting, I was in a car accident my face hit the windshield, and I remember the next day waking up of course I was in a nice room w/ birds calling outside and I had this overwhelming feeling of gratitude for being alive. it was amazing, and spontaneous and then gone.
I love your last line and aspire to live that way.
Mary4now
I love your last line and aspire to live that way.
Mary4now
There were moments in the ICU after my transplant when I felt so grateful to be alive that all the pettiness in life slipped away. No worries just joy.
Feelings, thoughts, emotions reverberate though our beings and the universe.
Lets not lead lives shaped by fear but by awareness and compassion!
Feelings, thoughts, emotions reverberate though our beings and the universe.
Lets not lead lives shaped by fear but by awareness and compassion!
Lol - my post sounds like 'days of our lives - hepper style'. I didn't mean to come on so strong, but am relieved that more people can be open about it these days without as much stigma - or maybe it was just my perception and my journey. Thanks J.
I hear you. We all have different situations, and my way of dealing with it doesn't work for, and isn't the best way for everyone.
Well done to you James.
I found I had HVC when my son was only a year old, and I made the choice to not share as I didn't want to to affect his life. If anyone had a problem with me, they had a problem with him also - I wasn't strong enough to try to educate the world; I wasn't even sure I was strong enough to stay alive long enough to see my boy grow up, which was my only priority. And the drug history from the early 80's made it a double stigma. I was fighting for my life, and fighting for my boy to have a mother, so I was very careful to shield him from what had gone on in my life years before.
I couldn't spend my life justifying my disease and educating the population - I was too busy being a Mum and trying to get support enough for that. I guess I was just too fragile to face being rejected - the few nearest and dearest to me treated me differently enough when I told them; I respected that but missed the intimacy.
When I first found out (1991) I was so upset and my doctor send me for a 'therapeutic massage'. The masseuse massaged me with plastic gloves on. I never thought I'd get to hug another human being!! The world has grown up a little since then, and people have more of a basic understanding as the HVC group gets larger.
My current partner of 12 years, took me and my son on knowing about HVC - he came to the support group and learned everything he could; he's my miracle man. Now that I've SVR'd we are a house free of HVC, and strangely, it makes no difference.
I told my work about the tx, but didn't share what it was for. "I'mherMum" - it must've been hard not to share with your Mum, but I'm sure it will be less burden for her. My Mum passed away years ago; I would've done the same as you (for as long as I could anyway). Good luck for a successful tx to all!!
I found I had HVC when my son was only a year old, and I made the choice to not share as I didn't want to to affect his life. If anyone had a problem with me, they had a problem with him also - I wasn't strong enough to try to educate the world; I wasn't even sure I was strong enough to stay alive long enough to see my boy grow up, which was my only priority. And the drug history from the early 80's made it a double stigma. I was fighting for my life, and fighting for my boy to have a mother, so I was very careful to shield him from what had gone on in my life years before.
I couldn't spend my life justifying my disease and educating the population - I was too busy being a Mum and trying to get support enough for that. I guess I was just too fragile to face being rejected - the few nearest and dearest to me treated me differently enough when I told them; I respected that but missed the intimacy.
When I first found out (1991) I was so upset and my doctor send me for a 'therapeutic massage'. The masseuse massaged me with plastic gloves on. I never thought I'd get to hug another human being!! The world has grown up a little since then, and people have more of a basic understanding as the HVC group gets larger.
My current partner of 12 years, took me and my son on knowing about HVC - he came to the support group and learned everything he could; he's my miracle man. Now that I've SVR'd we are a house free of HVC, and strangely, it makes no difference.
I told my work about the tx, but didn't share what it was for. "I'mherMum" - it must've been hard not to share with your Mum, but I'm sure it will be less burden for her. My Mum passed away years ago; I would've done the same as you (for as long as I could anyway). Good luck for a successful tx to all!!
I may not have anything to gain by telling them I have Hep C, but those I educate may become well educated. So the next person they meet with Hep C is better understood. For me it's about removing the stigma, most people I've talked to think it's an STD. As far as the IV drug use thing goes, I never have used drugs and as a person who had two pre '92 blood transfusions probably got that way. But It really makes me mad when people dis-respect people who got a disease through drug use to me it just doesn't matter. We are all in the same boat.
I start out with. do you know what hepatitis is ? Then I define the word. Tell them about all the different types of viral hepatitis and inform them they are all unique and not virologically related the commonality is that the damage the liver. If they have a look of disbelief on their face, I ask them for their email address and tell them I would be happy to email them information to back up everything I tell them. If they have a problem with me and my Hep C then so sad too bad. You can't change the world but you can educate it. Works for me.
I start out with. do you know what hepatitis is ? Then I define the word. Tell them about all the different types of viral hepatitis and inform them they are all unique and not virologically related the commonality is that the damage the liver. If they have a look of disbelief on their face, I ask them for their email address and tell them I would be happy to email them information to back up everything I tell them. If they have a problem with me and my Hep C then so sad too bad. You can't change the world but you can educate it. Works for me.
I agree with everything. Kristina you are so right, if I had contracted the virus from a transfusion I would tell anyone about the treatment.
Last nite I told my 82 year old mom, I didn't mention the HCV. Just the TX. A few other people know. I have to be very circumspect about who I tell the "whole" story to, this is a small town, and man, do they gossip. As a matter of fact I belonged to womens group and I took leave in Sept. before i started tx. Altho they "love" me and are supposed to be among my bestest friends, I know some would not understand and would be uncomfortable in my home, eating or drinking out of my glasses. Food that I cooked. You know. Half are nurses but they practiced not at all or so long ago that they really know little about these "modern diseases".
Oops, didn't mean to go on and on, but this a bugaboo with me. I have to start explaining soon when we don't go south on Jan. 1!
Last nite I told my 82 year old mom, I didn't mention the HCV. Just the TX. A few other people know. I have to be very circumspect about who I tell the "whole" story to, this is a small town, and man, do they gossip. As a matter of fact I belonged to womens group and I took leave in Sept. before i started tx. Altho they "love" me and are supposed to be among my bestest friends, I know some would not understand and would be uncomfortable in my home, eating or drinking out of my glasses. Food that I cooked. You know. Half are nurses but they practiced not at all or so long ago that they really know little about these "modern diseases".
Oops, didn't mean to go on and on, but this a bugaboo with me. I have to start explaining soon when we don't go south on Jan. 1!
MM: "Life's journey is not about arriving the gate well-preserved....It is about skidding in sideways, all used-up and worn out yelling WHAHOO! What a ride! :)
Haha - I'm sure I'll arrive all used up and worn-out AND yelling 'WHAHOO', but I doubt I'll be skidding in sideways; carried in sideways, or maybe hobbling in with a walking frame - but I'll be thinkiing of you when I yell the 'WHAHOO', MM.
Walrus: The doctor was a personal friend of his whom I'd never met. It was in the early 90's. My own GP was an elderley Chinese man whose wife had HBV; I was very lucky at the extra checks and balances he did for me; he moved to Australia to work with 'terminal' cancer patients. I was sad:- "I'm a terminal patient!! stay here and work with me!!" He was also far less discriminatory that most back then in l'il ole NZ.
Pam: there is a sliver of silver lining under the bleakest cloud even though we can't see it immediately; baby steps and love and laughter help along the way - the ONLY programme I could watch on tx was 'American Funniest Home Videos" - short attention span, and lots of laughs, made it the only one I could actually understand lol.
Haha - I'm sure I'll arrive all used up and worn-out AND yelling 'WHAHOO', but I doubt I'll be skidding in sideways; carried in sideways, or maybe hobbling in with a walking frame - but I'll be thinkiing of you when I yell the 'WHAHOO', MM.
Walrus: The doctor was a personal friend of his whom I'd never met. It was in the early 90's. My own GP was an elderley Chinese man whose wife had HBV; I was very lucky at the extra checks and balances he did for me; he moved to Australia to work with 'terminal' cancer patients. I was sad:- "I'm a terminal patient!! stay here and work with me!!" He was also far less discriminatory that most back then in l'il ole NZ.
Pam: there is a sliver of silver lining under the bleakest cloud even though we can't see it immediately; baby steps and love and laughter help along the way - the ONLY programme I could watch on tx was 'American Funniest Home Videos" - short attention span, and lots of laughs, made it the only one I could actually understand lol.
Awesome posts Kristina and MM. Really brightened my day.
Thank you, Pam
Thank you, Pam
Your former boyfriend is the one who missed out for sure! As for the doctor, I wouldn't go near him. Imagine what kind of damage could be done by that much ignorance in possession of a medical license!
Brent
P.S. Nice "rave" ;-)
Brent
P.S. Nice "rave" ;-)
What a beautiful post...and thank you...I only write what I did because I used to be one of those medical ignorami...(Hee hee, I invented a word...) and have made it a personal mission to "enlighten" others. I too have experienced a significant perspective change on how I see and deal with the world. I no longer let "little stuff" get in the way of important things like spending quality time with my daughter and husband. My priorities used to be my career first and family second, etc.. I've learned who my real friends were -the ones that are honest and will either kick or push your butt to keep you moving forward or forgive you when you turn into a snarling hep-treatment dragon lady.
The motto I live by now is:
"Life's journey is not about arriving the gate well-preserved....It is about skidding in sideways, all used-up and worn out yelling WHAHOO! What a ride! :) ~MM
The motto I live by now is:
"Life's journey is not about arriving the gate well-preserved....It is about skidding in sideways, all used-up and worn out yelling WHAHOO! What a ride! :) ~MM
The two I love are "live today as though it were your last, and plan your life as though you were immortal" (my favorite), and "in realty you've only got the NOW to work with; don't waste your now by letting your mind dwell in a perceived future" (that one gets me positively strategising).
When the worrying STILL comes through strong, I push myself to daydream on the 'love n laughter' moments until it grows and I'm surrounded by the good in us all - that seems to carry me on to the next step.
With medical issues, I constantly remind myself that my medical team (of which I am an intregral part) are doing a good job, especially me, because I'm the one who double-checks everything, and is in charge of quality control.
I have learned a lot through having HVC. I am also wholly aligned to 'loving everyone; trusting no-one' and have fine-tuned it to an art-form. Trust has so many expectations; I only need to trust myself. But everyone deserves my love, and if the expectation is taken away, the love comes back freely too. Whatever I have ingested, injected, and inherited is a part of me; I don't have to advertise or justify it, unless it's to promote a win/win situation.
I am extremely grateful when I'm given assistance by Doctors; but ultimately I am responsible for my own choices; I am responsible for All choices I make.
I'm proud of being a drug user who healed through the experience, but I grieved heavily at the thought of putting my family through any form of suffering now.
The people who didn't contract HVC through drug usage are the bravest of us all, and guardian angels of the hepper world who deserve the utmost respect and support because they have become unwilling witnesses to a world of discrimination - (and the heppers world is only one of so many), and discrimination is borne of fear. But we Do have choices, and that's what makes this forum special; freely and privately assisting with choices and giving support.
MM - I really believe that telling anyone about any medical condition should only be on a win/win basis. Everyone has something wrong with them, and as long as our nearest and dearest can shield us from prying eyes why bother? Most would only use it to make themselves feel better about themselves; I can't see that helping in any healing. Fighting any illness, is ultimately, a very personal struggle. You are one of our angels and can make a mark on the medical world where we would go unheard. Years ago, I was honest with a man I had become close too about my HVC status, and he checked with a 'doctor friend' and was told 'don't go near her', and I helped him make the decision not too also, because I didn't want to live with his regrets. That was some 18 years ago, and now, truly, I think it is he who has missed out - we are still friends and while I was understanding of his decision, I was really saddened by his doctor friend's comments. Things like that you can put right, and bless you for feeling the way you do.
... finished the rave..
When the worrying STILL comes through strong, I push myself to daydream on the 'love n laughter' moments until it grows and I'm surrounded by the good in us all - that seems to carry me on to the next step.
With medical issues, I constantly remind myself that my medical team (of which I am an intregral part) are doing a good job, especially me, because I'm the one who double-checks everything, and is in charge of quality control.
I have learned a lot through having HVC. I am also wholly aligned to 'loving everyone; trusting no-one' and have fine-tuned it to an art-form. Trust has so many expectations; I only need to trust myself. But everyone deserves my love, and if the expectation is taken away, the love comes back freely too. Whatever I have ingested, injected, and inherited is a part of me; I don't have to advertise or justify it, unless it's to promote a win/win situation.
I am extremely grateful when I'm given assistance by Doctors; but ultimately I am responsible for my own choices; I am responsible for All choices I make.
I'm proud of being a drug user who healed through the experience, but I grieved heavily at the thought of putting my family through any form of suffering now.
The people who didn't contract HVC through drug usage are the bravest of us all, and guardian angels of the hepper world who deserve the utmost respect and support because they have become unwilling witnesses to a world of discrimination - (and the heppers world is only one of so many), and discrimination is borne of fear. But we Do have choices, and that's what makes this forum special; freely and privately assisting with choices and giving support.
MM - I really believe that telling anyone about any medical condition should only be on a win/win basis. Everyone has something wrong with them, and as long as our nearest and dearest can shield us from prying eyes why bother? Most would only use it to make themselves feel better about themselves; I can't see that helping in any healing. Fighting any illness, is ultimately, a very personal struggle. You are one of our angels and can make a mark on the medical world where we would go unheard. Years ago, I was honest with a man I had become close too about my HVC status, and he checked with a 'doctor friend' and was told 'don't go near her', and I helped him make the decision not too also, because I didn't want to live with his regrets. That was some 18 years ago, and now, truly, I think it is he who has missed out - we are still friends and while I was understanding of his decision, I was really saddened by his doctor friend's comments. Things like that you can put right, and bless you for feeling the way you do.
... finished the rave..
Hi Mary,
I also remember the "freaked out newbie" phase....it was followed by the mourning phase, and then the anger-turned-to-optimism-to-educate-myself-and-get-control-back-in-my-world phase. Even as a paramedic, the only thing I really knew about Hep C at the time was that you didn't want to get it. Most medical people believe that, if you do, it's a death sentence. -And the "only drug users get Hep C" stigma that is attached to it is maddening! That alone has caused me to make it a personal mission to educate the medical world...There should be no fear in telling others you have or are fighting Hepatitis C...~MM
I also remember the "freaked out newbie" phase....it was followed by the mourning phase, and then the anger-turned-to-optimism-to-educate-myself-and-get-control-back-in-my-world phase. Even as a paramedic, the only thing I really knew about Hep C at the time was that you didn't want to get it. Most medical people believe that, if you do, it's a death sentence. -And the "only drug users get Hep C" stigma that is attached to it is maddening! That alone has caused me to make it a personal mission to educate the medical world...There should be no fear in telling others you have or are fighting Hepatitis C...~MM
I love the rocking chair one, and yes your right about all our problems being resolved, one way or the other somehow faith is something I am trying to be more aware of..
Having this written somewhere that I can see has really helped.
Having this written somewhere that I can see has really helped.
One saying that has always stuck with me since I first heard it "worry is a lot like being in a rocking chair, it gives you something to do but it doesn't get you anywhere."
Have you ever faced a problem in your life that didn't somehow resolve?
Have you ever faced a problem in your life that didn't somehow resolve?
I remember when I found out. But your mother is so right. But it's so hard to do. Take care
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