So after trying Western medicine for a while, I decided it was time to give a little Eastern healing a try...
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:)
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?
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
Getting my PICC line out....as quick as I said goodbye to George, I learned yesterday, he might have to come back - the good news (notice how "healthy/happy" I looked)
I have to tell this story because I can't stop laughing - and that is rare, I literally can't stop. Matt and I finally decide to see a "Tick Specialist" you know, just to say we tried it (since my LLMD is my family doctor -but has awesome super lyme busting powers).
So we meet Dr. X, he asks what my allergies are, which I listed, what surgeries I had, also listed and then the questions about ME, the patient ,stopped - never to return. The next 34 minutes consisted of him describing the Lyme debate, the Lance Armstrong debacle, insurance companies (and how they refuse payment with nearly everything with his name attached to it -great), HIS heart issues and HIS hospital stays - one at Jefferson - overnight, and one in New Jersey.
At this point I am unsure if the man knows my name, but I know his health history- benign heart issues, that he lives in NJ - not overnight, that his infusion nurse is out because she was having a Physical Therapy assessment and he thinks Lance should never have made the come back. Matt and I uttered no more than a few words before were were stampeded, think Lion King style, with another barrage about insurance companies, the cost of labs, comparing lyme tests to pregnancy and German Measles, my c-section, and something about bending Matt over a table and doing "something" nefarious to his ass.
Matt and I try, and epically fail, to telepathically tell this guy to STFU. He leaves, we quickly consider our escape plans, one at a time? Both at once? Running? Speed walking? Shit. He's back. He then tells us he can't do anything because insurance will deny it. Why? Because it's Dr. X. Plain and simple. So what can he do for us? He offers us the low rate of one month of IV antibiotics and supplies for the low low cost of $3750 - yes, this is a Doctor's office, now close your eyes - poof it's a used car lot. We feel the crazy insanity starting to wear off on us, we can't antibacterial hand gel the terribleness of this visit away.
We then remember upon checkout that this is going to be submitted to my insurance - Aetna - who in Dr. X's eyes did me more than a solid by covering 3 months of antibiotics, Aetna - the company that HATES Dr. X and all his tales of woe. Shit, what are we going to do. Even an office visit to this quack is likely to detoniate any slim chance I be treated and covered for anything lyme related ever again. The top of the invoice: 'Tick Borne Disease Center" Shit. Diagnosis code:088.1 Lyme Disease. Shit. Shit. Physician: Dr. X. Shit. Shit. Shit. SHHHHIIIIT. We decide the best thing to do was to leave no paper trail, but anonymity comes at a cost. To magically rewind the past hour and pretend the morning never happened. But we were there being stared down by the office staff while Tears for Fears played in the background.
Our only option....pay out of pocket for the visit. No submission to insurance. No trace we were there. It's like it never happened, minus the $125 vs the $50 we would have paid. Our pockets were lighter, our hearts were heavy, but that extra $75 is a really expensive "this will be funny later story". Later is now, and like I said.....I'm still laughing.....Matt thinks I have the disease they talk about on TV now, the real medical one :Pseudobulbar Affect. So today, Matt used his WebMD and infomercial skills to diagnose me while the "real doctor".....well, he may need a seat on Oprah's couch.
Aidan doing "the mommy face"
Just had a great in- home Reiki session! Good to know despite feeling like you are the burden of the universe, that there is still good inside you, "you have great positive and powerful energy around your heart".....somedays, whatever you choose to believe in, it's good to hear that :)
More news - the good, the bed, the ugly:
After having really bad chest pains/ back pain, had 2nd chest x-ray, 2nd abdominal ultrasound and more blood work. Dr. thought possibly my cystic duct leaking bile or a pulmonary embolism. I had a CT with contracts (iodine AND bariums -gross) and found no PE, but I have pleurisy and bi-lateral (both sides) pleural effusion, which means I have fluid under my lungs. How? Why? We still don't know. I am taking pain meds and heavy duty anti-inflammatory -meds. Going to the Dr. again on the 5th and talk about doing a needle biopsy of the fluid to see what it is (Viral, bacterial, fungal ect).
Bottom line: Lots and lots of pain, hard to breathe and I sound like a toad.
Good news: My pathology looks ok and my lymph node was stuck in the cystic duct and inflamed but benign!
Bad news: Had to return to CCH for a chest x-ray, blood work and another abdominal ultrasound, chest pain and dagger like pain in my back (keeping me awake and wheezing through the night) may be a result of a bile - leaking cystic duct or a small clot that is in my lungs. One day at a time only works when your days don't all bleed together...but like Kat Williams, "Every day I'm hustlin'...because days like these you just got to be....
Went to see the surgeon today - took bandages off. He said the preliminary pathology report confirmed Cholecystitis, but we are still waiting for the full report to come back as my surrounding lymph nodes were inflamed. Not too sure what this means - trying to stay away from WebMD. I got to take a glorious 4.5 hour nap, thanks to Matt. I am so thankful for those who have been cooking us up yummy meals the past few days - and thanks to all of YOU who continue to follow my story and show your support....thats all she wrote folks....off to watch House M.D (thanks Dad)
As has been suggested to me I will make more of an effort to provide updates, insights, observations, crazy rants ect on a daily basis - so if anything you will get a few laughs out of this.
When telling Aidan that I was going to have surgery Matt and I thought we should sit him down and tell him in as much detail with the least amount of impending doom as we could. The conversation plays out like so:
Matt: Aidan, come here please Mommy and I want to talk to you
Aidan:(walks into our room) Am I in trouble?
Matt: No buddy, just sit down Mommy and I need to talk to you.
Aidan:(looking apprehensive) ok....
Matt: So you know Mommy is sick and you know she has Lyme disease. Well we just found out....Mommy is turning into a lizard...(improv - Matt and I try and keep from laughing as we had not planned this or what ensued)
Aidan: What?!,(eyes fill with tears and he runs out of room and is about to have a full on tear filled panic attack)
Matt: wait wait buddy! I am just kidding, Mommy is't turning into a lizard, she just has to have surgery to have her gallbladder taken out - and the good news is, she doesn't even NEED a gallbladder anyway!
Aidan:(Still recovering from the shock of my impending lizardness) sighs...ok, so are you SURE she isn't going to turn into a lizard then?
Matt: Yes buddy, I'm sure, are you ok?
Aidan: Well I am now, but I was really worried.
Matt: You though she was going to stop mommying and start lizarding?
Aidan: Ya (with tears) and that would be horrible.
Thanks Matt, way to break the ice.
Moral of story, your parent having surgery is NOTHING compared to them possible turning into an amphibian. #lessonsinparenting2.5
The money raised will go directly toward medical expenses. I have a deductible I have to meet each year, and mine just reset. Hospital stays averaged $5,000 out of pocket, and I've had 3. My IV medication is only covered up to 50%, and I had 3 months and a total out of cost expense of nearly $3,000. This gives a snapshot into the "cost" of being ill both financially and emotionally. So I thank each and every one that took the time to read my story and those who were able to contribute - I am forever indebted to you :)
Getting ready to get rid of my Lyme -infested gall bladder....
3 months of IV antibiotics and my PICC line "George"
Here was my life with the PICC line
Trying to live a life without Lyme...and I need your help, it's a long road ahead and every brick on that road helps.
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.
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.
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.
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.
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.
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....
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".
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.
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...
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....