Sarah Olson: Recovery with IV Rocephin*)!*)!!

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
CaliforniaLyme
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by CaliforniaLyme » Wed 7 Nov 2007 16:10

And to clarify- this was before IV Rocepihn went off patent and every penny of that $50,000 went to Roche phamrceuticals, not my Lyme doc. He was an angel.

And as for therapy, I didn't need a psychiatrist but this whole time I was ill until I was so ill I couldn't walk well anymore I saw my therapist who was great for me to talk things out with and process with, and to complain about plhysical pain to since everyone else was sick of hearing it.

And as for that doctor, I write her a letter every year, letting her know I am still doing great since Iv Rocephin, and that I wish she would have helped me when I needed a doctor.

cave76
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by cave76 » Thu 8 Nov 2007 17:54

*****And as for that doctor, I write her a letter every year, letting her know I am still doing great since Iv Rocephin, and that I wish she would have helped me when I needed a doctor.****


GOOD FOR YOU, Sarah. Too bad us Lymies can't or don't or ______ fill in the blank-----do that with all the ducks who were so dismally wrong!

I'm not pointing a finger at anyone, since I'm in that group also.

NellyP
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by NellyP » Fri 9 Nov 2007 18:18

I have been reading Sarah's story with trepidation (although I kind of followed it "live" as it was happening from the time (at least from the time when she joined sci-med waaaaaay back then:)!), yet this is absolutely great to read it all in flowing order.

I keep thinking I should do the same and write my story. Many people know me in the Lyme community, yet I realise I almost never (especially these days) talk about myself. I used to do so a bit more, I remember trying to recount my adventures with various anti-babesial treatments, but I haven't to this day felt capable of doing what Sarah is doing at the moment ie tell it "how it happened". I think it would be so, so SO painful !

And one of the things I still can't come to terms with, is the way I was abused by doctors.
I was humiliated, scorned, insulted, ill-treated, NOT treated, nearly certified (if it hadn't been for a last minute surge of energy on my part which made me literally run out of the house half naked and hide in bushes just before the police came to take me away to the psych ward, my now very ex husband simply couldn't cope with how sick I was, and as the doctors told him it was all in my head...he ended up calling the shrink and the police).

If I were to write letters every year to the doctors who behaved like criminals (I mean it, criminals) with me, I would spend a small fortune on stamps writing to cardiologists alone :)

I would like to put it all down on "paper" and when I read Sarah's story, I realise how important it is to not let it all slip away into oblivion, but I am not sure I am capable of doing it. Maybe one day...

Nelly

CaliforniaLyme
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by CaliforniaLyme » Fri 9 Nov 2007 22:01

Do it, Nelly- I have often wondered about your story!!! Do it here, in this forum!!! YOU TOO CAVESTER*!)*)!!
I write yearly letters to 3 doctors and wrote one time letters to 2 others!!! I try and be as civil as possible.

I am AWFULLY glad I have kept writing that one ID doctor, because in 2002 the letter I wrote her was co-signed by 5 other Lyme patients from our local gorup who all lived near each other at the base of Nisene Marks State Park- with that as the point of the letter- asking didn't she think it was weird all of these delusional people lived within one mile of each other??? And then the NEXT year I got to send her the 2003 study proving we WERE right all along.
Last edited by CaliforniaLyme on Wed 19 Mar 2008 15:49, edited 1 time in total.

CaliforniaLyme
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by CaliforniaLyme » Fri 9 Nov 2007 22:21

So my first time with Doc X he saw me for 3 & 1/2 HOURS and did a complete history and complete physical- and he was NICE to me.

All the way home from SF I repeated to my husband, as I am inclined to do, repeat things in wonderment, muttering, saying "WOW!", "He was NICE to me!"

It was so long since a doctor had treated me normally. Post Lyme Syndrome made them all very nervous.
Except him. He was nice. NICE.

And then, one by one, for almost a whole year, he put me on oral regime after oral regime for months at a time. I would Herx, I would have minor improvements even, but one symptom set kept progressing- and it was the worst symptom set of all. I seemed from the very beginning to have different symptoms that went together, and when I was treated with one abx some would be reactive and some would be untouched.

It was the worst things that went untouched.

I Herxed on Biaxin and twitched like crazy and much of my twitches got better. BUT I continued to get worse & worser. I know that's not an official word- worser. But that's what I got- worse & worser.

I had progressive weakness. Leading on my left side.

I began to slow down.

I began to slur.

One day I was in our driveway and I looked down and there was my left hand twisting and writhing like it had NO BONES. Like a bunch of snakes. It was the strangest thing. It was beautiful and hideous and so scary. I wasn't moving them. They were moving on their own.

I was writing a check at Safeway when my hand did somethign strange. I was already writing messily, more than ever before, because of the stiffness and the arthritis and the swelling in my hands, which were bright red all the time now. The red palm rash. I would put my pen in my hand and use it like a paintbrush almost. But this was something different. My hand moved in a new way, indescribable. Micrography. It was years before I came across this term on a Parkie website but when I did I went "BOING- that's what that was!!!" My handwriting came out tiny and cramped and as if it had been written by someone else. It wasn't my writing.

So my voice was no longer my voice.

My body was no longer my body.

My body which was my body was so lonely for touch. Only my baby touched me.

And my cat.

My husband had not touched me since I became ill, or actually, since right after when he himself got Lyme disease. He lost all sexual feeling for me. He had no sexual feeling at all.

This horrible thing began to happen every night. Hypothyroidism causes it. Every night my eyes began to swell up, top and bottom. And my face, the rest of it, was subtly swollen. Throughout the day the eye swelling would go down a little, but the overall edema was always present. I no longer looked like me. I was no longer pretty, not even a little. I had always been pretty.

Sometimes, my upper and lower skin above and below my eyes would literally swell out by 3 centimeters.
I looked like a monster. Only my baby and my cat didn't htink so.

Instead of being loving and supportive, my husband reacted with horror.

"I don't want to be SEEN with you." he said to me.

And he meant it. That was when I was still going out places, before I got weaker. And he no longer would go with me. He was ashamed of how I looked. I was ugly.

But he was the monster.
Last edited by CaliforniaLyme on Wed 19 Mar 2008 15:50, edited 1 time in total.

CaliforniaLyme
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by CaliforniaLyme » Fri 9 Nov 2007 22:51

I will never forget the FIRST time I was treated like a monster by strangers, teenaged boys.

I had always been skinny & pretty & hip- and looked younger than I was- so even at 28 I was still being checked out routinely by teenagers. Not anymore. I didn't even realize the difference until this day, unfortunately the very same day my husband had told me he didn't want to be seen with me.

I was going to the pharmacy to pick up meds, of course.

And as I walked inside, with my toddler, a couople of teenaged boys loitering outside began to mock me, to taunt me. I had never seen them before. They were strangers. They said, "What IS it?" as if I was a beast unknown. They said, "Watch out- it's looking at us- it'll give us the Evil Eye." "Does it have eyes?"

My right eye was often buried in the lid and the left one would be peeking through, slitty, and both often seeping clear liquid, not tears.

I was so shocked. I was scared my toddler would hear them and BELIEVE them, that she would catch on, that SHE would look at me with the look they were giving me. And it was honestly the first time I realized that *usually* teenaged boys looked at me very nicely, and held open doors, and were very friendly. They were not like that now. Not at all.

This is what I looked like on good days. Like someone else.

http://www.type2hypothyroidism.com/Type1VsType2.html

Like a different version of me.

CaliforniaLyme
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by CaliforniaLyme » Sun 11 Nov 2007 19:18

And on bad days I looked like a monster.

CaliforniaLyme
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by CaliforniaLyme » Mon 12 Nov 2007 18:05

SOmeone wrote me and suggested I was sharing too much personal information online here.

Well, when I was really sick and that stuff was going on with my husband rejecting me, I didn't talk about it with ANYONE, not even, for over a year, with my therapist, because it was so painful. Now I realize it was not my fault and at some level back then, I took it on as my fault. I was ashamed of it. I thought I really was a monster. I wasn't. Even if I wasn't pretty anymore, even if I was ugly, I did not deserve what he did and did not do.

So I write about it now because if there is any poor Lymie out there right now essentially being blamed for their disease, I want you to know you are not alone and that it is not your fault.

Best wishes,
Sarah

CaliforniaLyme
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by CaliforniaLyme » Wed 14 Nov 2007 14:38

IV Rocephin has brought me to this day, November, 2007, and I am so grateful.

Overcome with guilt, but grateful!!!

I have had the pleasure thanks to Iv Rocepihn of having a semi-normal life, and a sweet one. My 10 year old, almost eleven, has been able to grow up believing in Santa Claus and the Tooth Fairy. I never did; I was always cynical and felt sorry for the poor saps who believed in such transparencies. But deep down I felt jealous of people whose parents took the time and bothered to pretend. And with my own daughters, I have enjoyed such illusions far more than most people do, I think. I've gone to great lengths to produce presents at Xmas with DIFFERENT wrapping paper, with friends writing FROM SANTA (yes, my older daughter reads Flash but she has never read here yet) in different handwriting. She always thinks she'll save those until the next year- those little cards- but they vanish!! Mysteriously!!!

And the Tooth Fairy? Was there ever a sillier thing? But there's sometihng about getting a silver dollar instead of paper money that has always had her convinced it's real. Until this year.

I just blew it!!!

About an hour ago I tiptoed into her room and, heck, she's almost eleven. I figured she MUST know by now that it's all a crock! So for the last 3 years (thank you, parents of X at her school, who raised the price for all of us in one fell swoop, "Mama, why do you think Abigail got so much?"!!) the price of a tooth in Aptos, CA has been five whole silver dollars- but this year I didn't bother going to the bank, I just used a five dollar bill. But it was THERE.

Yes. Just like every year, it was there.

Her letter to The Tooth Fairy. (As follows, produced verbatim but has flowers drawn all over it)

Dear Tooth Fairy,

Who are you? ____________ (line drawn for the answer) What is your name? ________ _________
Are you a male or a female? (check box!) M [] F []
Do you have other children or do you just have ME???!!! Y [] N []
Do you give me the same amount
as other children? __________________________________
I hope you have a good night.
Love,
Evan

Part of me feels that familiar contempt of my childhood still, "Oh, what a dumb kid!" but that's just a teensy weensy part of me, the rest is overcome by that overwhelming parental love, "AW!!" a million times stronger than puppies and kittens. And within the next hour she is going to wake up and find a 5 dollar BILL, not five silver dollars.

AGH!!!!!!!!!!! THE GUILT!!!!!!!!!!!

So THIS is the big drama of my day, the big hardship. Thank you, IV Rocephin!!! If it weren't for IV Rocepihn I would have not had YEARS of life with my daughter, years of good pain-free life in which I was able to truly be present and to be there for her and with her. Years of good friends with straight faces telling her that they still believed in the tooth fairy, years of goodness so that I have a super-dorky kid who STILL believes in the tooth fairy at age almost eleven!!! I *knew* she still believed in Santa Claus, but The Tooth Fairy?? *sigh*

I just hope she isn't too crushed!!!
Best wishes,
Sarah

CaliforniaLyme
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Re: Sarah Olson: Recovery with IV Rocephin*)!*)!!

Post by CaliforniaLyme » Wed 14 Nov 2007 16:45

And life went on...
Last edited by CaliforniaLyme on Wed 19 Mar 2008 15:08, edited 1 time in total.

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