This Board Is My Support!

[19Dragon52]

Hi Everyone!

I have already sent a couple personal messages to a couple people in this group but I guess I better introduce myself if I expect the commaraderie I desire & need.

I am brought to this board because I have very little outside support.  My family is small and each is very sel-absorbed.  Seemingly angry that I'm not keeping up with all the chores that need done and frustrated that I'm not my usual busy self.  (They're frustrated?!)  Most of my friends either don't understand what I'm explaining to them or act & respond like I'm feeding them a line of cr*p.  I try to be patient since they really don't know very much about this virus.

I was diagnosed over a year ago with Genotype 1 Chronic Hep C.  My liver enzyme level is only slightly elevated but my viral load is over 4.5 million which excludes me from treatment.  My energy level and sleep time are starting to get the better of me but I got some excellent imput from a member of this board.  They suggested that perhaps Procrit would oxygenate my blood and help eliviate my symptoms.  I see my Gastro-doctor in Feb. so until then I am going to initiate aerobic breathing exercises daily which are also suppose to bring extra oxygen to the blood.  It sure won't hurt to try!

A point I'm trying to make is that when I wrote this person I was totally fed up and not caring if I woke up once I fell asleep.  Their suggestion & caring enough to reply to my plea has given me something to work on thus instilling Hope.  I would have never thought about possibly not having enough oxygen in my blood and who knows if my doctor would have thought of it.  He's a good doctor but sometimes a, "Snoozer" so I need to stay proactive.

Penny....I have to laugh.  One friend of mine keeps teling me I need to start taking Gingko Biloba for my poor memory.  Is this another symtom I am unaware of?

I want to thank you all.  I feel like I'm finally home.

[Jackie]

Welcome home Joyce.

That was a great idea on the oxygen/procrit. I am impressed! Just think before long you will not be the newbie and be passing wise info to the newbies.

The best thing to remember is take control of your life. Learn and absorb all you can get copies of every record!

Nice to meet ya and good luck!

[todd]

Hi Joyce, welcome to the board. This is my only support group too, I'd be lost without it.

Not many people have a clue about hepc do they?

I don't understand why you're count excludes you from treatment. Insurance reasons?

I am a genotype 1b. My count was 8 million at start of treatment. After 16 weeks, count was at 732,000.

There are lots of people here that really know a lot about alternative treatments.


Take care.

[19Dragon52]

Todd,

I'm glad you mentioned treatment in regards to my viral load.  I had another person ask me the same thing.  My next doctor appt. is in Feb. so I believe I will pose this to him.

When I inquired about treatment at my last appt. the doctor told me that the medication was not capable of lowering my viral load enough to make a difference.  He could be holding off because I take quite a few medications for my bi-polar condition.  It may also be my mental condition, itself.  I intend to get some answers from him, regardless!  The position of my insurance company may also be a factor and he doesn't want to say anything.  Doctors can be so strange but I insist to be kept informed.  After all it's not his life....but mine.

Thanks for the welcome....It means a lot.  I hope I can also be of help to others that come aboard.  Have a great day, Todd!

[todd]

Hey Joyce, I'd speak with my doc about that for sure. He's either misinformed, or just doesn't want to treat you.

Some docs really don't want to treat hepc. I had a gastro guy flat out tell me that treating hcv is hard, and he didn't know enough about it to feel comfortable treating me. I appreciated the honesty.

[Patti]

Hi Joyce,
Make yourself comfy cause there is so much great info here. Before I started my second round of treatment I was worried whether my insurance would cover it again so I called them and they said no problem as long as I was injecting myself! This one phone call saved me from weeks of stress and worry that we certainly don't need. Maybe you can call your insurance and see if they cover you - if so take that info to your Dr. I wish you the best.
Prayers
Patti

[Jackie]

February is a long wait. They could not do anything before then? They sure know how to drag it out huh? We are here to wait with you, unless you get something sooner.

Good luck!

[snoopia]

Welcome Joyce!  This is one of my few support systems.  I have a very supportive family; but, like everyone else says, they just aren't well-versed in Hepatitis C stuff.  Fortunately, for me, they're learning though!

The only real flack I got was from my oldest daughter's boyfriend.  (They're pretty young - 22 and 21, my daughter being the youngest).  When he found out I had hep c, he flipped and said some hurtful things.  My whole family is getting together at my parents' house this year for Christmas.  It will be the first time in 25 years that all of my family will be together at Christmas, father, mother, son, daughters (and their respective families), etc.  Well, my daughter has two daughters as well and this punk jerk (sorry; anygry and not afraid to show it!) said he wasn't coming at Christmastime (which is fine all by itself - to each their own) and then continued by telling Sara (my daughter) that she and her girls couldn 't go be around me either!  Hold the fort son - NOBODY tells me that I can or cannot see my child and grandchildren.  Sara adopted the same attitude when he told her this.

I confronted him about it and he said that I couldn't fault him for being scared.  I told him he was absolutely right - the reason I told everyone LONG before the holidays is so the information could soak in and so that if they had any questions or concerns, they could talk to me about it and educate themselves - knowledge is power, I say.  He said that's what he did and I said not until AFTER you had said some mean and hurtful things.  He said he was sorry that I took what he said that way - totally putting responsibility for his words on me (the little shit!).  I really put forth an effort here and told him if he had concerns, he should have called me and we would have talked about it.  He said it wasn't about me (like hell it wasn't) and it was about him and learning about the disease - when I suggested that he might have  called me; he said he would rather get his information from a neutral source since (and this is SOOOO condescending) it's a personal thing for me and my information might be biased!  I explained that him saying that the babies couldn't be around me was like saying that I wasn't responsible enough to make sure I had no type of contact with my grandchildren that would jeopardize their health.  He didn't get it (22 year old, you know!).

So, I ended the conversation that this was the way that I feel and it no less valid than the way that he feels.  Just because he doesn't like the reasons why I was upset doesn't  make the reasons any less real or valid.  We ended the conversation by me telling him that this type of response from me would be guaranteed to come his way if he makes mean and hurtful comments about me in the future.  His intent doesn't make a difference with how something is taken and he needs to be aware of this.  I told him that I wasn't trying to change him - it's his life and his journey - not mine - and it's not my job to change the things about him that I might not like; it's my job to accept him or not.  I asked him if he undestood this and he said yeah - it means that I have to walk on egg shells around you.  (What an idiot!) To which I replied, "No, it just means that you need to be aware of how I (or anyone for that matter) might feel and he can either change how he says things or not.  If he doesn't, however, don't be hurt if I pull away (emotionally) in an effort to protect myself from negativity and people who are judgmental and hurtful.  THAT, he got, thank God!

Julia

[19Dragon52]

Julia,
  I am so sory that you have had to deal as you have with your daughter's boyfriend.  I'm sorry but what a jerk he is for the way he is handling your misfortune.  Tell him to take his butt to the library and do some informative reading on the subject.  Ignorance is NOT bliss!
  I sometimes have to tell my husband if he can't put in any energy to be supportive don't use so much more energy aggravating me.  I really had to struggle to detach myself from his comments implying laziness because of my spells of tiredness and sleeping.  Because I know longer work due to my manic-depression if I ask him or my daughter, who both work, to help me with certain daily chores they ignorantly tell me I'm home all day doing nothing else.  How funny!  When I worked full-time I remember them expecting me to be totally responsible for all house & family rearing needs.  What gratitude and selective memory they have!
  Well, thanks to my supportive family at this website in only 24 hours I have received more positive direction on different situations than I have from anybody in the outside world over the past year since I was diagnosed.
  I'm not resentful.  I can be confident now that my God has led me and be assured that He takes care of his own.

Thank You For Sharing A Piece of Your Story With Me...