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Wow..It is December 2009...I think I am lost in time!

Dec 11, 2009 - 2 comments
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Hepatitus C

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December

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2009

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think

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healthcare reform



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First, I wish all my heppa friends and family a peaceful holiday season.  With this virus, we just can't afford to get stressed, so like they used to say, "Take it easy, Bro".  I don't know what has happened to the time, it seems since I was told that I was infected, 2 years ago, time has disappeared into a void.  I started out in stage 4, or I mean when I found out I was already in stage 4, my liver was scored A on the Child-Puge)?) rating, which means it was stable, already had cirrhosis, and decided to treat.  Did not go into treatment blind, I knew that the chances of me clearing where very slim, and because of other health issues, I could get worse, but, one of the studies I had read, said that going through treatment lowered the risk of liver cancer, and I am not one to lay down and give up!
So, did 14 weeks, which did excellerate other medical problems, became so sick, they pulled me off.  For me, I started at 5million viral load, and went to 13million.  I will not get it checked again.  Not giving up, just not dwelling.

My liver now has decided to not do its job very well, and so I live on lactose to keep the anmonia levels near norm.  Did you know you can see things and hear things when your anmonia levels are high?  LOL...I didn't know that, and thought I had a Bot worm in my leg....good thing I am involved in heppa groups.  To share what is going on really helps me, just knowing that what is happening is "normal" for this virus helps me make jokes and deal with it.

I have read all the stuff about all the miracle cures, milk thistle, blah, blah, blah, and maybe it does work on some before your liver is already cirrhosis.  What I have discovered and learned, the less I put in, on and around my body and environment, the better I do.  Almost everything is processed through the liver...so I am pretty much chemical free.  All the medications I have to take, are processed through my kidneys, hence, the gallon of water to drink a day.  I eat raw and living foods, no added perservatives, chemicals, anything and use living yogurt.  I do not eat meat, my body does not do good with it and also I cannot afford the health food store meats without the growth hormones and dyes.  I miss pepsi and fast foods...and about once a month, I choose to indulge.  My liver complains, but, hay...the rest of the month I am good to it.  

In stage 4, there are a lot of days that it is hard to even get out of bed, due to the fatigue and I have a lot of pain, but, I make myself get up, clean up, and contact at lest one person.  And, I game.  For me, the dropping out of all the pain and stuff around me and escaping into the wonderful world of fantasy and role playing, is awsome.  That is my mental health hold.  Plus, I can laugh, use less pain meds and drink more water!  For us, we each need to find an escape, even if it is only for a short time, a safe place where there isn't a virus inside, destroying us.  This is not denial, this is good mental health!  LOL

The time that I have left is very valuable to me.  I want to infect others with laughter, with a sense of there is more to living than just surviving...living is waking up and today, looking at the ice cycles hanging off the roof, petting my cats, loving my family and friends and giving good memories to them.  I do not want what is happening to me to be what they remember, I want them to remember me loving each precious moment that I have and dealing with each symptom in a positive way, not giving in to despair and grief.  There is not enough time left to spend it feeling sorry for myself or saying what if....I already did that the first couple of months when I was first told that I was sick.

I really care about all of you here, and totally understand what is happening and why sometimes, we disappear into ourselves.  I am so thankful to all of you that have treated and are clear.  I spend time talking to people about the virus, the need to be tested, and to treat early.  And, I rejoice when I hear of people clear!  Of beating and killing this monster, and my wish is that the ones who are clear or in early stages, be involved in getting the word out, medical research, lower cost treatments, education for the health care profession.  I have a great want to, but my body just can't.  So, I hope that others take up the cause, be involved, care.

Sending you all hugs and lots of love and care....

Kat

Thank you...thank you...thank you and tons of hugs!

Oct 12, 2009 - 3 comments

Sometimes I feel all alone in my battle.  I get on the pity, poor me pot, you all ever been there??? LOL...and then I come here and ask for friends and what a reaction!  WOW....I promise to get back to you all, it just will take some time....I have great ideas and intentions, I just move slowly now.

I have found that dealing with this virus is a daily battle, it does so much more than just hang out inside of me and silently destroy my body, it rears it's ugly head and makes me so tired that I do not want to get out of bed, hurt so bad, I do not want to get out of bed (you see a pattern here???)  I get frustrated by all the mixed information from the medical profession, why won't they admit they do not know for sure?  

I have learned that this is my body, my virus, and I have to gather information and learn by searching, asking others, and doing what is best for me.  My liver tells me when I have eaten something it doesn't like, so I am listening to my body.

I eat raw, frozen, nuts, beans, no chemicals, no additives, no preservatives 99% of the time.  When I eat too much protein, iron, or sugar, my liver screams at me.  I use no chemicals in my house...we mix vinegar and baking soda to clean with...use no chemicals on my body, remembering that it goes into my system.  So, my hair is turning grey now and my nails are a mess...but I am stable....not better....not worse.  I can deal with that.

I waited almost a year to get disability, we lost everything we had, but now I have disability.  So, one step forward.  Now, I have to wait until 2011 to get medicade because I make to much on my disability!  I might lose my county medical, have an appointment next month to determine my eligibility.  Then, I won't have medical help if they take that from me.  So, two steps back.  All I can do is laugh and wait, and get determined....I won't die until they do something...there has got to be someplace, someone who will say enough is enough.

This is a journey into the wilderness...I am so glad that I have others with me.  We that are infected are the voices and until we stand up and make a noise, not a lot will happen.

Stay healthy....Stay positive...Slay the Dragon

Are you 12?  Did you know that one in every 12 people are infected???

Hugs
Kat

I have accepted

Oct 09, 2009 - 3 comments
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Hepatitus C



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Two years ago I came here and was so overwhelmed at the time that I wrote the last entry.  I had always worked, been healthy, positive and all of a sudden was hit by numerous health issues.  They didn't creep up on me, instead they jumped me from behind and knocked me out.  I lost my job, home, all possessions and waited for disability.  I had to go on food stamps, get free county medical help and live in a studio with 5 cats and my husband and 27 year old son.  The treatment didn't work and physically I am in worse shape.....but.....I still have my family, the cats and a roof over my head, disability was approved although they have cut off my food stamps and I won't get medical until 2011!!  It is funny, go one step forward and two back.

I have learned that I cannot hide my head under the covers and pretend that this is not happening.  I have to reach out and care for others, letting people know about this virus and giving them hope, while they give me hope.  I need the community of others to share and cry with, to laugh and give hope to.

I cannot walk this path alone.  Not only am I dealing with death and poor health, but am also trying to prepare my son and husband for the future.  I do not want to do it with a lot of negative energy, but with laughter and love.

I am so glad that this site is here and I sincerely hope to get to know all the people here and to share and grow.

Together, we can slay the dragon and have a future!

Reality Bites

Oct 26, 2008 - 6 comments

I just faced reality today...2 years or less to live and it bites...I guess I have been living in a dream world, where it would all go away...****.