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and it's a hard rain's gonna fall.

Nov 16, 2007 - 2 comments

genotype 1a, stage 3/4 HCV...

Symptoms started after an 84 plasma gift during shoulder reconstruction....although, it could have been the gang rape I suffered while going through south central LA...at 12 yrs.old ,... or it could have been the stupid teenage experiment I conducted as a teen shortly after my crazy mom killed herself (and killed my grandmother as well) following which my dad then died of cancer....or, who knows what or how, in the end no one deserves to have this disease however many or few mistakes they may have made.
All I know is within 2 years of the surgery.... things went downhill health wise.....that's when no amount of rest seemed to help.

Then it was trying to convince docs my exaustion was something majorly...., it was, "yer crazy, your blood work is fine"...then it's "you're hormonal". then it was "there's nothing wrong with you." or "maybe you have fibromyalgia".
this went on for 15 years. ...guesswork, and not much testing beyond the basic minimum......grrrrrrr

Turns out I spent as much free time as possible (which with 3 jobs and as a single mom wasn't much, at the library reading medical journals since no one believed me......and  everything I researched and told them was wrong.
it turns out, was wrong. Unfortuantely, it never occured to me to think it might be HCV.
So 10 treatments/ailments that I found later, and got treatment for....I was still sick.....still some underlying thing causing it all.  

Then one doc finally, (not my doc or the first 5 specialists) finally says "oh, you were in ER and thought your abdomen was exploding but you endoscopes are fine....???".....so .he thought to do a freakin Hep test.....
(mind you after 4 years of steadily saying to my GP, my liver hurts, my spleen feels swollen...she finally sends me to a gastro guy ONLY because I ended up in ER doubled over....)

If hepatitis is the biggest blood disease on earth, which it now is, you would think docs would be trained to think of it...hello????/...

Lesson: it never pays to turn your care and thinking over to anyone...that's the lesson here.

Also, when you hurt, don't tough it out, and don't let them medicate so you won't even care if it hurts....
which happened after my spinal cord/car accident injury.....
they wanted to put me on permanent morphine, which I refused. I did agree to one they said was non-addictive....
taken as directed it made me lethargic...not care anymore....and made me stop trying to find answers for a year or more....do not let doctors over medicate you...it saves them diagnosing what is really wrong!!!
If one stops feeling what your body is telling you, or takes anything that zaps all ones strength, then we won't be proactive and catch things in time...all of you, .... .
just keep pushing to find out what's wrong.

I told them my estrogen was gone, my thyroid was low, my pituitary had quit, my back was broken...they NEVER diagnosed any of that...
in each case I was told I was wrong...
in each case the blood work/tests that I finally got them to do.......... proved I wasn't wrong....
somehow, I'm no longer impresses with the state of education within modern medicine today. Wonder why?

Even after going through a windshield losing it on a hairpin curve, and moving a telephone pole a foot over in the ground,
I was told "your back is fine"............. (without an MRI) for 5 years, only after constant insistance was I MRI'd
turns out several discs were still ruptured/leaking and spine is permanently bent. Leaking discs secrete proteins the body has allergic reaction to...which produce great inflammatory pain. My doctor said this is not true....but Stanford Medical Back Pain site says it is....

Oh well, I could talk forever about things my lady doctor missed...
just had my gall bladder out after years  oft telling her It was sick...she finally agreed to the right test, and it was about to exlode....now my liver has 3rd degree burns across the whole bommom of it....what good will it do now.
So much for lady doctors being more attentive.
they must get a lot of whiny patients and ergo assume women are all exaggerators,
I thought only men treated women this way, but I was wrong.

My big stupid mistake was in listening to her, and toughing it out as a result...and not showing up therefore in emergency until I was stage 3/4 and convulsing with fevers.....because I was such NOT baby....and that was the undoing...

Anyway, now I'm treating and hoping to come back from the precipice of all she dismisses and overlooked, and all that good stuff!!!!!!!!!!

Maybe tomorrow I can figure out a funny ending to the above, right now it escapes me...



Comments
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374652 tn?1494815035
by Mary4now, Jan 02, 2008
Merry B,
I can see that you have definetely been through it,  Somehow reading all that you have been through calms me down, because I know you know and you've taken all your information to help yourself and others.  Frankly, thats what its all about.  Most people think its about spinning their wheels to make money, to be secure, to have a great image and to financially succeed in life.  Its not because at the end of the game the pawn and the king go in the same box, and that moment comes for everyone  (Not to be morbid,) but our priorities have to be about helping each other and caring for each other.  Alot of times I think I am not from this planet with the way I think, and it has always been that way.  I do wish I had paid a little bit more attention to the money stuff though.  
One of the best things to happen to me healthwise, was to become a massage therapist back in 1988, it helped me to show how I care about others, (xcept when i succumbed to doing it for $)  therefore myself and eek a living.  Now I'm trying to find a way to cut my living expenses, possibly move south to a cheaper location w/ mom (I'm 58) so that I dont have to stress so much about paying this huge mortgage for an 1100 sq. foot home. (welcome to the real estate bubble)  I'm really focusing on myself because I am in such shock and pretty stressed about what I'm going to do financially with all of this.  But the plan is in place, mom is supportive and she says we can do it together she's 84 she should be enjoying her life.  Well we love each other.  M  I hope this was appropriate, it looks like I need new friends and I wanted to share my thoughts in hope of some feedback. I feel very insecure right now.  

233616 tn?1312790796
by merryBe, Jan 11, 2008
please forgive me, I'm only now seeing you posted this (on the 10th) don't visit my own profile much.

you've got every right to feel insecure right now...it's suppose to be scary before it gets better.

Funny, I was just watch the directors cut of Blade Runner.....where in the last few moments life became so much more precious...I think that is the gift of this disease.

I also think many live with this in stage 3 for another 15 years, or 20...or more if they get a transplant...so it's not the automatic death sentence some think it is. Even if you don't clear you can still have a good life if you care for yourself. SO keep this in mind while you try to take all this new news in.
I did massage from 71 to 90, but the last half I did mainly stroke victims and the infirm....not just for the reward of seeing them walk again, but because I was losing my physical strength to do isometrics and squeeze all day....so on my own I made more with 3 clients a day than I did with 8 a day healthy people.
Also I eliminated the overhead by going to them, and charged medical rates which are higher for my time and travel.
If you move south you will find there is a demand for this in many retirement towns. You can make your own hours....and deduct your car etc. It's better to get paid more for 2 hours work than for 6...especially while having this exaustion.

It is a healing art, but can get about the money. I think you'd like working on the sick....they love it when they can hold a fork again with what was a whithered arm...etc etc.....something very rewarding about this. Of course you need to study not just massage but learn rotations and physical therapy techniques. I also had referrals from docs...orthopedics and such. Getting your name out there allows the home bound to call you....they will pay for home care as they cannot drive even if their insurance won't cover it.

You guys will be fine, thank God you have your mom and you love each other...maybe some good sunshine and a whole new start will be a good thing. My best friend just moved outside Phoenix....she said in the burbs there a hundreds of jobs to be had. Help wanted everywhere.  She's thinking of elder care. 15 bucks an hour and no heavy lifting...just feed em lunch and stuff like that. You could even do an elder care in your home, as long as you have to be there for your mom anyway. the average fee is 2500 to 4500 a month depending on the needs of the patient. So even a couple extra little ladies would give you a decent income without too much more work. I mean, fixing an extra plate, or an extra bath isn't as taxing as rubbing bodies all day. You've still got lots of options. Besides that way, if you need to rest, you just have baths later, or lunch, etc...so it's an easy job for someone with this disease compared to many others.

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