Yep not 1, not 2, but 3... lmao... coming out of a short gruesomely painful hurtz..
Warning, this is stream of conciousness purging, keeps me out of rent a friend's office...
My name is Cynthia, I am 46, a single parent of three daughters, (the only adult parent they have mind you).
My middle daughter has Down Syndrome, she is 21, her father passed over many years ago, she is half an orphan and majorly medically involved.
I am educated, have some college degrees, (I am a nerd, love school, love learning).
By the way the medical community has treated me like a wingnut this year past, and I am not accustomed to people not following my directives...
At my most recent yob, I was employed as a paralegal/office manager. One of our specialities was medical mal practice...
Add this to 21 years in a quest to keep my daughter with DS alive, I already had a vast understanding of how said medical community works, (or tries to function, methinks work might be construed as an emerging skill)...
On September 6, 2005, I was bit on both my ankles, but what I think was a flea, (my Paul calls it the super flea)...
At that juncture my life as it was ceased to exist. I currently cannot work, operate a motor vehicle, or walk with my prior and exclusive Cynthia strut.
However, I was able to open 3 cans with a can opener yesterday, and can now negotiate up the stairs one flight without having to rest.
Babystepping, but making progress, Rome was not built in a day. I have also alleviated my fears that I will be sharing a room in a group home with my middle daughter.
However, when the aphasia from this latest hurtz abates, I am calling the state to see if my humble abode meets the prerequisites for same.
I applied for SS disability, and as that is another area of law I am quite learned on, I can only pray someone screws up and accepts my claim first time out... dreamer ain't nothing but a dreamer... but I got dem dere high hopes...
Okay so I know that is stupit... but a gal has got to have some dreams. Since I am under house arrest, and wear a PICC as an electronic tracking device, allow me my simple pleasures...
On a reality based note, my lettle boss is ready to go straight to a judges hearing if/when I am denied...
I was able to work one of my two part time jobs, until about 4 weeks ago. I work security for entertainment venues for xtra cash (american).
This one venue is the ampitheater in my town, and I had duly informed them I needed an old man yob for the concerts. When asked to define same, I said you know the sit in the chair and do f all yobs, they were pleased to accomodate me...
I live with my two youngest girls, 17 going on 18 and the 21 year old. My eldest graduated George Mason this year. I was unable for obious reasons to attend same...
My Paul has moved in with us too, to help as I am indeed a basketcase, (I mean really the ability to open 3 cans independently is no big whoop).
Paul rearranged his life, his career, his home, to be here, truly wondrous...
With Paul here it greatly alleviates my daughters' strife, as their once active mom has turned into a person who has been invaded by the alien body snatchers...
This has had a severe effect on them, but we are big talkers, so I know that this to shall pass, and we will have come out with new life lessons and stronger...
Though the anger they have still surfaces and spews it's venom from time to time. That my friends is par for the norm...
Plus teenager females aren't a walk in the park under the best of circumstances. That kid in the exorcist wasn't possesed she was a teen...
As for cognitive functioning, short term memory nil, therefore no new long term memories, (me poor brain is overloaded with trivial data noone needs to know anyway) kind of a catharsisis one would imagine...
Gross and fine motor skills are pretty lame, though my endurance for physical activity has inceased, I can get up the stairs in one fall swoop...
Yep, I keep doing the little train that could exercise, (eg I think I can, I think I can), but honestly I am still pretty pitiful...
Perceptual vision is shot, no depth perception, no night vision, brain messages scrambled, been taking beta carotene though as it morphs into Vitamin A (a known liver toxin) and morphs again into visual purple. Also doing eye exercises...
Full body and partial body numbness, uncoordinated movements, dizzyness, arthritic pains, tremours, headaches from the river styx are part and parcel of my life now...
Other than that, like 9 out of 10 docs say, there is nothing wrong with me.
I work to keep my liver clean and have demanded and gotten a liver panel every two weeks, so far the enzymes are alright...
My prognosis is another 2 to 3 years of house arrest afore the many varied and unusual parasitic bacterium are vanquished, perhaps they are tallyband...
I have reassed my life journey, tried to take agressive actions to ensure that I live through this latest I can eat crisis for breakfast...
My life as I knew has ceased to exist, but not at the level of the tsumi (sp?) survivors, or my fellow americans on the Gulf Coast...
NYC logic dictates that life is not fair, there are no givens, and, the light at the end of the tunnel is most probably an oncoming train...
I am prepared for this battle, and perhaps it is a necessary evil and I will be hard pressed to remember all this pain and suffering in 5 years when a new crisis for breakfast rears it's ugly head...
I intend to turn this into another alchemy experiment, where my abilities to turn chit into gold are pretty famous in limited circles...
K... purge complete... ACT I over, curtain falls... crowd goes crazy... Ziggy played guitar...
Thanks for letting me share, I do so love Oprah moments
posted
Cynthia, You have a gift for humor and language. I'm sorry for all you and your family are going through. I did enjoy reading through your post. Although, as you say, your external life has ceased to exisit for now, your internal life is expansive and vivid.
Posts: 628 | From the south | Registered: Dec 2005
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posted
Thank you kindly ma'am... yeah and with the Saturn/Neptune opposition in force, I truly do not mind being away from the general public.
Being home bound is not so bad, my home has always been my sanctuary, even after my third hurtz when I stopped walking like Quasimodo...
Sometimes I think I will go batty if I don't get out. Have managed 5 social engagements this year and one 2 day road trip.
T'would be betterer though if I could go outside in the sun sit in my yard, go in my pool, or my hottub. Alas it has been an especially ugly summmer weather wise, so thats okay too. I was always outside though.
Ironic I got bit inside, god is a jokester, he just testing my patience, I do so admire Job...
K, I am delaying my nightly boot and infusions... have a good one y'all
-------------------- wpcj, Cyn Posts: 20 | From Virginia Beach, Virginia | Registered: Aug 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Cyn,
One of the gifts I've gotten from Lyme is gratitude for the craziest things:
I remember distinctly the day about a year ago when I was able to actually straighten out my leg for the first time in about 7 months.
You would have thought I'd discovered America.
Three jars? There are days I struggle with one...so good for you!
I have NO doubt you'll be walking that famous Cynthia strut in no time.
You take care, Cyn!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
K. you are a wonderful writer and obviously, a wonderful person.
You have passed what I have called the "Oh sh#t-Halleluja" stage of Lyme, where one is angry to have this terrible infliction, but happy to know what it is and get at wiping it out.
The second stage is the "Why me?-Oh,Yeah??" stage, when you realize that this is going to be a much longer fight than you first thought...
and at the same time you are mustering all the grit, **** and vinegar needed for the fight.
posted
Cindy, you make me laugh over & over with your witty comments; I know your boss loves you for those stressful days at th office!
So happy to read you have Paul in your life, and he is providing for you & your 2 daughters. It's great when you have that special someone going thru this and caring for you "thru sickness and health".
Best wishes on winning your SSDI 1st time, 1ST TRY! I'm routing for you; took me 5 years, but I didn't have your background nor did I know about the DISINISSUES web site of helpful info to WIN SSDI or LTD. Take care; we love hearing from your witty self. Bettyg
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posted
We finally have power, Jihad dat gummit... (the jihad is mine quest to get betterer)
Carol: Were you at that doc's too? Thought I saw you there.... thanks for the grin....
Andie: Thank you for the kind words, if I take things slow, am having a coordinated day with just a touch of dizzyness I sometimes now can recreate it.
Ann-oh: Thank you too for tyou lovely words.I think I am premanently stuck in the "Why does noone believe I am sick" stage.
Bettyg: Thank you as always, you are a peach
-------------------- wpcj, Cyn Posts: 20 | From Virginia Beach, Virginia | Registered: Aug 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Cyn,
I don't know if this will help, but I also struggled initially with people not believing I was sick. I just couldn't seem to get a lot of people to take me seriously (friends and family).
It wasn't until I was markedly better that they seemed to realize just HOW sick I'd been.
I think I understand it now: the onset of my illness was gradual. For about 2 or 3 years, I was tired a lot of the time and unmotivated. I did what I could to push myself and try to comopensate for that. What they saw was me being a lazy slacker, I guess.
In other words, they'd seen me kinda sick for a long time, so by the time I was struggling wtih walking, they'd already formed their impressions of me (we do that as human beings, sometimes!).
Anyway, when I started getting better, the improvement was also gradual, but it was really dramatic. And I think that's when they began to understand how much my life had been compromised by an illness and not just out of disinterest or laziness.
I suddenly was treated like a walking guru and a Lyme expert. I wasn't dismissed, ignored or treated with a sort of weird disdain.
On my part, I was just glad to be feeling better again and to have my circle of friends back in my life.
Not sure how much sense that just made, but I suspect it's not all that uncommon...
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
Cindy, in TREEPATROL'S NEWBIE LINKS; around half way thru the pages is this:
BUT YOU DON'T LOOK SICK & THE SPOON THEORY
Both are excellent to read and send to family/friends in DENIAL of our illnesses! Bettyg, your "peach" friend! lol
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Carol B
Unregistered
posted
Since this topic has been raised--- Although I am still on disability leave I went to the" back to work all you can eat crab feast" and the FIRST thing one of my co workers said was that someone saw me at Walmart-so I couldn't be THAT sick and I must have some money.
Yes I made a trip to Walmart recently with my daughter for back to school supplies. What this person did not put together was the fact I could not walk around the store with her, but stood, leaning heavily on the cart for support-out of the way-out of the confusion-out of the I can't stand this but I will do it for my daughter.
What they also didn't realize is that I had taken the money out of a loan to pay for her pencils and paper(and protracter)etc. because I was TOO proud to take up an offer from a local church to pay for the girls' back to school needs.
I was hurt by their remark and realize some people think I am a slacker. It adds insult to injury. Anyway- I thought I could get over this, but since it is still bothering me two weeks later I figured this was a good place to dump it.
And on that note I will also add that I may not be from Baltimore for long because we have decided to unload this moldy oldy house "as is" and move to a trailer in the county.
Good night , tis late Sweet Dreams, Carol
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I do so love words of wisdom. I, continued working and came home and passed out. What you said rang so true and opened an enlightenment for me.
I don't think I really realized how bloody sick I was, until christmas vacation, when I would stand up and then be so tired I would just lie on floor and go to sleep.
My hands were club paws by then and all I could do was put lights on the tree. I do so love my christmas tree and all the ornaments are made by us. Was sad.
Also was a wake up call for me, I knew if things didn't change I was at great risk.
Thanks you for your input and the truth, perhaps now it won't tick me off so bad when people tell me therer is nothing wrong with me.
Twas a gift you have given me. Thanks
Betty:
As always you are a peach
Now if I could start feeling peachy things would be wicked way kewl.
Carol:
Been there too.... it blows. Told my bosses I was working harder than I ever had worked, cause everything is just so difficult.
Now that they see I am still on PICC and the 20 hour infusions they realize as a co-worker said I was not "making it up".
Also I can now proudly brandish test results to all validating everything I said was wrong with me.
We are still trying to get the cars running from the ernesto not the hurricane, at least we have one running.
One out of three ain't bad either meatloaf... thank you all sincerely for your input and support...
-------------------- wpcj, Cyn Posts: 20 | From Virginia Beach, Virginia | Registered: Aug 2006
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