Living, not Lyming

 
Raised: $3,285.00
Goal: $5,500.00
 
 
 

Created by

Kate Rose

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My name is Kate. I am....well, I am a lot of things. Just that act of writing this is humbling for me. I feel like I am so many things, I have felt that I can always "do it on my own" an... more

 
 
 
 
 
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Updated posted by Kate Rose 12 months ago

A random alphabetical sampling : Doctor Style

Instead of writing another bitch fest about all the Doctors I have seen in the past 7 months – I decided to do us all a favor and just make a nice and neat little list. Please feel free to use while teaching your little ones their ABC’s, because of course A for Ass-hat is far more interesting than apple.

A – “Ass-hat” the doctor that spends 3 minutes and 28 seconds with you and tells you “it might just be …..(insert random catch all DX here, depression, fibromyalgia) and sends you to pay your $50 co-pay while your head is still spinning from the fact that this person went to medical school AND has a license to practice. The ass hat: totally and utterly useless.

B –“Bitch” the doctor who believes that her bright pink Dansko clogs are so “cute” and when you list your symptoms you are unsure if she is listening or thinking about her need for a pedicure before her vacation in St. Barts

C – “Cardiologist” Dr. Love. I mean what can I say here? “Lay flat, open your shirt and ignore my cold hands …”

D – “Dentist” I love my dentist, he is like the Santa Clause of teeth. Rosy cheeks, a round tummy I often hear gurgling as Mr. Thirsty takes care of my drool. Now that I will be seeing him for cleanings 4 times a year, I’m glad we both understand that under NO circumstances can I have a “busted grill” – aint no way.

E – “Eeyore” This is the Dr upon waling into the room, you wonder if he is the patient? He looks more sad than whatever brought you to his office. You suddenly check for the trademark tail nailed (or more appropriately sutured) to his white lab coat. He talks like Ben Stein and you try and cheer him up. You leave wondering if you should charge him for a consult.

Untill next time…..

 
 
 

Updated posted by Kate Rose 13 months ago

So after trying Western medicine for a while, I decided it was time to give a little Eastern healing a try...

 
 
 

Updated posted by Kate Rose 14 months ago

Tales of Doctor's offices...

Today, after a 45 minute wait for my check up, we had to throw in the towel and reschedule so I could get to PT on time.
Me: I'm going to have to reschedule.
Receptionist: Ok Kathleen, sure you don't want to go back - they can take you now?
Me: And then I get a whole 10 minutes with him before I have to bolt out of here for PT, $40 for 10 whole minutes, I think I will pass.
Receptionist: Ok Kathleen, what days?
Me: Tuesdays or Thursdays, please.
Receptionist: Ya, can you come on Wednesday at 9:15?
Me: No, I have my internship and have PT the other days.
Receptionist: Ya, we have nothing until the week of the 27th...
Me: That's 3 weeks away...(starting to get that chronic ill dismissal) and that is just NOT going to work for me.
Receptionist: Well thats what we have.
Me: How about a Monday, the 11th perhaps?
Receptionist: Nope - nothing all day.
Me: Why don't you just have George call me, and by the way my name is NOT Kathleen. (at which point I turn to Matt and say, am I crazy? - he says no:)
Receptionist: Um.....
Me: Just have George, Dr. Limpert, call me. He and I will figure it out.
Receptionist: (clearly about to shart her pants) Can I have you schedule with the office manager?
Office Manager: Ok, Kate what days work for you?
Me: Tuesdays/Thursdays - I can do Monday the 11th but I heard it was not an option.
Office Manager: We can make it an option, how about 11:30?
Me: Sold!

Dear Receptionist Lady - I have 1 eye and half a paralyzed face, I named my PICC line after my doctor who I have been seeing since 1994. We're on a frist name basis. I know his cell number. You were never going to win battle of the date book with me.

Signed- with love and victory,
Kate, not Kathleen

 
 
 
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Created by Kate Rose on January 17, 2013

My name is Kate. I am....well, I am a lot of things. Just that act of writing this is humbling for me. I feel like I am so many things, I have felt that I can always "do it on my own" and for the first time in my life I have realized I can't do it all.

I am 29 years old. I am a mother to my wonderful 6 1/2 year old son Aidan. I am the girlfriend of the most amazingly selfless man I know, Matthew - who would walk over fire for Aidan and I. I am a daughter and am lucky that my father is one of my best friends - for that I feel so blessed. I am a sister to 4, Sean, the oldest inspires me everyday to be myself and follow my heart, no matter where it takes me, no matter how long. Ian, my "little" brother has been to Afghanistan and back and will return again in February, he is one of the bravest people I know - he fiercely loves his family and friends. Jenny, the only other girl, is in the Navy - Jenny has always supported me and without question will help and support others. Colin, the baby, amazes me, at 18 he has the composure of an adult and this instinctual inner moral rudder that leads him to always do the right thing, and I've never heard him once complain. These are my family and I share these stories with you so you get a sense of who I am - for without them I would be nothing. 

    I am also a graduate student, trying desperately to finish my final year in the MSW (Social Work) program. I am full time and have a 20 hour a week internship working with individuals with substance use disorders and I am so happy - I have finally found a place I feel I belong. My Clients help me as much as I help them, as they can teach me lessons that are not in any pages of any textbook.

            I am also a almost 10 year cancer survivor. I was diagnosed with Ocular Melanoma in 2004, I had surgery, radiation and TTT (trans-pupillary-thermotherapy). With a high mortality rate, there was a lot of uncertainty back then. The risk of metastasis remains there, and will so for the rest of my life, but I have a wonderful team of ocular oncologists at Wills Eye and medical oncologists at Kimmel Cancer Center at Jefferson that keep pushing me to keep it positive. That message came loud and clear when just 5 months after my last treatment, I became pregnant with Aidan, he truly is my miracle.

            After graduating with an undergraduate degree in English and fighting to finish school between being sick and having a baby, I realized I wanted more out of life. While social work may never make any Forbes list, it is another way to keep pushing me forward.

            

That is the back story - I know it is long, probably filled with multiple spelling mistakes and grammatical errors abound. I wanted to share that all with you so you get a sense of who I am, I'm not just "Kate" the girl asking for help. I am a mother, a daughter, a sister, a friend asking for help.

            In October of 2012 I woke on morning with a migraine and my right eye (yes, my cancer eye) unable to open. I went to the ER and had a head CT, spinal tap and routine blood work. All signs pointed to Lyme, but the shoddy testing said otherwise. I was treated very kindly by the staff at Chester County Hospital, but I, like much of my life had been, was "inconclusive". I was sent home with oral antibiotics to treat Lyme. We went and saw my PCP who is WONDERFUL, Dr. George Limpert, who clinically diagnosed me , as my eye paralysis moved to my mouth and across the midline of my face. It was Lyme, I needed IV antibiotics. I had a nurse come out put in a mid line catheter. we went to see an infectious disease DR who thought I might be having a brain aneurysm. I was sent that day to Wills Eye Emergency room for a head MRI - looked ok, and I was sent home. I then met with a Neurologist who was concerned about my visual deficits and sent us to see a Neuro Opthamologist at HUP, Hospital of the University of Pennsylvania. They were concerned and wanted to do a full workup - the tested me for over 40 different diseases, infections, bateria, syndromes....wanted to believe it was something OTHER then Lyme. HIV, Syphilis, Guillian Barre, West Nile virus, Miller – Fischer, brain and or spinal tumors, re-growth of my melanoma, metastases, Lupus, MS, every auto immune disease under the sun, rheumatoid arthritis, chronic fatigue syndrome....

I had every imaging study known to man. I had an EMG, Nerve Conduction Test, repeat spinal tap, which was 30cc and took 45 painstaking minutes, ultrasounds, cat-scan, chest and spine x-ray, repeat head and spine MRI. After 5 days, the neurology and infectious disease teams working me up – they scratched their heads and my discharge papers read "atypical Lyme disease".

After getting home, I had been switched to a PICC line and had been receiving IV antibiotics for 2 months. I started experiencing tremendous back pain. I found out that the spinal MRI had not been done so my kind Dr’s here ordered it only to discover that I had fluid in my spinal (facet) joints and a herniated disk. Every day was filled with pain, fatigue and tears – a lot of tears.  I began PT 3x a week. I then started having pain in my right side, after my annual appointment at Kimmel where they do a abdominal ultrasound to rule out metastases, I found I had gall stones and my gallbladder was "diseased". I was advised to see a GI and get it removed.

After all that uproar - It had been 3 months on the IV antibiotics and it was time to see how I would tolerate oral antibiotics and give my body a break.  Monday, January 7th I had my PICC pulled out. The following week was the longest, most agonizing week of my life. Thursday, January 10th I met with the surgeon who said I needed to have my gall bladder removed the following Tuesday, January 15th.

Today is Thursday, January 17th. I am at home recovering from my gallbladder surgery. My surgeon is going to send a tissue sample of my GB to a lab in California tand do a PCR test to check for Lyme, as Lyme commonly plays "hid and seek" in the gall bladder. The surgery went well, I came out of anesthesia with 1:1observation because I had difficult time breathing, I still have facial paralysis and my mouth doesn’t stay closed and breathing through my nose was hard. The trapped Co2 gas caused unyielding pain in my shoulder. I kept telling the nurses “that was not in the brochure”. The pain was/is horrific...


  I am home now. Taking my Lyme medication, still waiting after nearly 4 months for my right eye to open.  Still waiting to get an ounce of relief from the pain of chronic Lyme. Still waiting for the storm to quiet. All this waiting and fighting has left me weak and tired. I try and keep pushing forward, trying everything I can to get my ravaged body back to some kind of normalcy. I want to go outside and run around with Aidan instead of lying in bed with chronic fatigue and pain.  I want to graduate from graduate school and show Aidan he can be proud of me. I want to travel. But most of all I just want to live a life I deserve, one of hope, of happiness, of love, of LIVING. If I have to live with Lyme I will, but I don’t want to live FOR Lyme anymore – and I need your help. This has been the most humbling experience of my life, and I wish I had the strength of a thousand men - but I need your help, friends, family and even the kindness of strangers - to help pull me through this.


Thank you for reading my story....

 

 
 
 
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Everyone I know should be reading this story....

posted by Paul Spohn 13 months ago

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Recent Donations (52)

$3,285 raised by 52 people in 15 months.

$50.00

Sean Melcher

12 months ago

 
 

$25.00

Anonymous

13 months ago

 

$25.00

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13 months ago

 

$25.00

Anonymous

13 months ago

 

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Kristin Ramsdell

13 months ago

 
 

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Ryan and Meg Kuhnle

13 months ago

 
 

$500.00

Anonymous

14 months ago

 

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Anonymous

14 months ago

 

$25.00

Sean Donoghue-Neider

14 months ago

 
 

So nice I had to do it twice! Your the best investment anyone could ever make sis, Love you so much!! xoxox -Sean

 

$50.00

Meghan Northrup

14 months ago

 
 

Kate stay strong. I got diagnosed with Lyme last year. Luckily it was tested with the oral antibiotics. Praying for you to have a speedy recovery

 

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