Spiral's Hep C Story

This is told through an e-mail cybrangel one night cause she actually wanted to know my story

I wrote it in long hand cause this was my first real e-mail and I wanted to get it right.

It took me 3 hours to type and I couldn't believe the response I got from cheryl!!

What a warm and wonderful response.

If you want to read more about her so go to my cyberangel page and she is under Cheryl!!!!!!!





So Sorry I haven't gotten back to you sooner than this.

It can be difficult for me to send an e-mail to someone due to all the things going on with me with this illiness!!

     I wanted to read over your letter and make sure I answered all your questions as best I could.

     So here goes my answers!!!!!!!

1.Husbands & Friends:
My husbandand I have been married for 5 years he is 38 and im 46 (I like them young LOL) .

   We have been dealing with me bring sick since we first met.

I dont think I had hep c then, just unable to eat anything,badstomach pain when I ate, periods that were so painful I thought I was going to die,bleeding that wouldnt stop and one morning waking up and having pain go from my pelvic area to my leg .

 So joker (my husband ) decided he was going to make me better.

I had been going thru this pain for 25 yrs and during that time they found I had cervical cancer and did a biopsy on me came out alright I thought.

       At the time Joker first took me to drs noone would believe I had lived with this pain for 25 yrs and was still able to work.

So because I was strong it went against me with the drs and they didnt believe me,course that has happed to me alot in my life.

The Drs always end up apologing or something to that effect.

          We finially found a good Dr but he wasnt able to treat me cause the insurance wouldnt let me go to him, but without one test, he figured out what was wrong.

He was such a great gyn he really knew how to treat woman!!

And noone who went to him,who had a migraine suffered for long .

He gave them a shot that made it all go away.

   Anyway he said that the surgeon who performed the surgery on me would hate the job cause you could tell I had lots of adhesion from previous sugerys on my stomach.

  He said I was full of infection cause I had been sick so long that he hoped theyy would put me on some high dose antibiotics or I would end up with a whopper of a infection.

      He was a true phophet that man was!!!!!    So I went to a ob gyn that was covered under our insurance and thats when my hell began!!

  He decided to do tests first.

He found on pelvic sonagram 2 cysts and called us on phone and told us that everything was fine it was only 2 cysts and I would be ok.

Well joker had a fit.

Joker knew it was more than that.

I was so sick,I looked like I had aids even the Dr said that.

So joker talked him into doing a lap on me to see what was going on inside.

When they opened me up they were shocked it was a mess in there and they didnt expect that cause they went by test results alone.

What did they find?

My stomach was closing up due to adhesions so thats why I couldnt eat they fixed that.

I had so much scar tissue in me they could hardly see my ovarys or uterus.

They did what they could to clean it up but they only could get so much done there was so much!!

So I go back in 3 weeks later for a hysterectomy:

What did they find/

My uterus was covered with endemetrosis,it was black,my ovaries were in my intestiines,my fallopiam tubes were wrapped around my ovaries,my uterus was connected to my bladder.

He had a real hard time with that one.

   And do you know with all that sugery that they had to do,the only pain I felt when I woke up was the one in my pelvic area shooting down my leg which I still have 5 yrs later

   I ran a high temp in hosp. and they still discharged me three days later with no harmones. no antibiotics, no nothing.

When I got home in just 48 hrs I was back in the hospital with flu symptoms: Diarrhea that smelled like something had invaded my body that wasnt nice

The nausea was so bad I couldnt smoke.

I ached all over and my temp got higher.

I was dizzy and was so weak I couldnt even stand up.

A dr at the hospital believed me once he saw my stools and ordered a Hep C test!!

I had no idea that what he had orderd or what hep c was.

You guessed it came back positive non a non b.

The Dr who told me about it asked if I did drugs before he even told me the test results.

I answed :

No why ?

Then he told me.

Silly me I didnt know what he was really talking about

I told him I was a nurse and worked with all kinds of people esp had worked with aids pts in a place where we had no gloves or anything.

Who knows where I got it?

Ive always worked with the very sick the very poor the cuban and hatian refugees I had gotten bit by a kid that was in a psych unit I was working.

Who knew where I got it.

He then told me that I had a dirty surgery cause of the ovaris being in the intestines and maybe thats how I got it.

So the dumb shit Dr put me on ceclor, an antibiotic you never give a pt who is having dirreaha.

I took it at first when I got home and then I realized that it was a bad drug and stopped taking it!!

Because of that drug I ended up with colitis for 2 wks and joker couldnt get me to go back in the hospital I wonder why?

I kept getting sicker and he found a great Dr who admitted me to a hospital and said I got the colitis from the ceclor.Thank god I stopped taking itor I would be dead through all this.

I continued to have that pelvic pain that went down my leg..

This is when I know I had my first Hep C attack I will never forget how I felt after that surgery when they tested me for Hep C.

Now you know that story back to what you wrote about.

         Husband and Friends:

I know that joker is getting tired of this,but only cause Drs give us the run around with no help to offer.

Cause I am not insured anymore.....Pre-existing.....

He gets lonely alot cause now I cant stay out of bed without getting an attack.

We've spent alot of ttme together reasearching Hep C and we have alot of fun going to all the different places we do when he gets a new assignment.

   If we both could have one wish we would make it go away just like you said so I could be me again.

And know what it was like to be a well wife to joker.

I have faith though I believe that they will find a cure one day.

Regarding friends:

              I used to have alot!!

I am an aries and we love people but I've gone through the same thing you have with that.

   Most of the friends I still have will be my friends way past death we are that close and all of them have been thru their own hell so they try to understand mine as I do theirs.

The ones I lost weren't friends anyway or they would still be around.

Some thought that I was faking this so I could stay home and let joker support me!!

Like I really like having someone to support me and I decided that I would make this virus come live in my body for just that reason, so I could stay home and eat bon bons!! (LOL)               Your right:

The best way to get friends and family to understand is to keep them informed of what the disease is and what it is doing to you and what causes it ect.

   I can think of alot of other ways I could get attention than this,and have alot more fun doing it.

               Positve thinking....


What does this do for me?

   1.Gets me out of bed to the bathroom to throw up and not fall on my face

2. To be able to look at food and not throw up!

3. To believe that one day we all will get a cure.

  Thinking positive as you say will not get rid of the virus what it does do is keep us fighting to live just a little longer and to appreciate every sunrise and sunset we see.

              To me positive vibes is when your husband goes out and buys you web tv and all of a sudden your not alone and all the answers you have been seeking are right there at your fingertips and life has purpose again.

That people like you respond and are sending their care and concern thru the airwaves.

               To me that is positive thinking and acting in a positive way.

I didnt really go thru alot with Hep C till 2 yrs ago then it really hit hard.

I went to bed and stayed there thru no choice of my own.

         Symptoms......

Aint the itching a bitch , no matter what you do nothing seems to relieve it and your right it goes right thru your skin esp when you get hot then it itches and burns.

   My tear ducts are stopped up and thats why I cant cry it sucks if I try to cry it hurts like hell.

  The fun part is when my eyes start leaking water for hours and like you my nose starts to run fun fun fun!!!!

         Zinc

I've never taken I have   a problem with vitamins and react funny to them.

This runs in my family I asked my sister why you might be having this reaction and she said it might be the additives that they put in it so if you want me to I will find out what the name of a good company is from her,that are more natural without the additves.

Vomiting.......


when I get my attacks I can't even look at food or go to grocery store or out to a resturant.

Have you ever tried tigan suppositories for nausea esp when you have the migraines it really helps me.

  Herbs;;;;;;;;

I used to grow them alot of them and made money selling them cant anymore when I get sick they get neglected and die.

Herbs are the best things in the world to heal people they are so pretty to grow and so much fun that I miss alot so I may go out soon and get a couple just a couple, last assignment joker had in Va .

We had a catus collection that was fun cause they hardly take any care.


Imitrex.....

No I cant take it causes my liver to hurt ect.

  I'm glad it works for you wish it would for me.

There is nothing in the world worse then a migraine!!!

From what I've been reading on the internet this is:

This is one of the symptoms of Hep C.

I get them daily they can be so bad they will wake me out of a sound sleep.

Sometimes they are so bad that nothing will make it go away.

They can make you want to take your head off and throw it across room.

  Drs always think people are trying to get drugs thats their guilt cause they can't fix whats happening!!!

The E.R. really makes you feel like a drug addict.

I could tell you stories.

Like I know you have your own to tell.

Lesions on brain....

I have no idea what they mean a neuro dr thought it meant migraines or M.S. might even be part of Hep C God knows the last 2 yrs I have lost days not knowing who I was,I've also lost numbers they can be real hard for me

.   I also can go through times when I can't talk or form words correctly.

Are the lesions causing this or encephalopathy I have no idea. I dont think they can operate and take them out and noone has told me what they can do to fix them.

I have lots of neuro symptoms so who knows.

 Shingles......Herpes.....

No to both!!

Its part of Hep C that causes those sores.

I found out that Hep C causes a microbacteria on your skin and that why when those sores come out they go away without a problem no to herpes good idea though herpes cant go away by using neosporin.

The only good thing about the sores is they tell us Im about to get better after what I call an attack.

Now I've develped a rash on both arms and it itches, itches,itches.
  Going to Dr

I have a apt with a hepatoligist May 12 never been to one of those before,liver foundation gave me his name and so did this research place I called so we will see

A footnote to Dr's apt. on May 12:He was awful!!

We found an italian Dr on internet who is interested in my case so that should be interesting.

I hate Drs all of them!!!!!

RECORDS.......

We have all my records and thank god we do cause Drs dont always tell you what is in your tests so that way we can find out things,like when they did a cat scan of stomach to find out what the pelvic pain is that I told you about earlier turns out they might of left a piece of ovary there but noone will take it out!
Once again no insurance..

Everytime we go through my records we find somethiing new.

E-mail club........
I would love to be a part of that and honored that you asked me!!

I cant write anymore my hand is not working.

Soon I will write you again and have some questions for you.
Like where do you live?
By the way right now I am in Houston Tx.

          AAAAAAAAAAAAAAAAAA

Those above are angels I sent your way to look over you and keep you safe

and to thank you for taking time to care!!

Write back soon

spiraldance

ANGEL HUGS
SPIRALDANCE

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