An Emerald Ring, St. Patrick's Day, Dr. Dinesen

The days following the ER visit with Dr. White, I scheduled appointments with the Doctors she recommended: Dr. Dinesen and Dr. Eddy. I called out sick at Wegman's (I was supposed to work the weekend) and was just so tired. Like, I couldn't even lift my iPad to read - my arms were just so weak. I also started to have shortness of breath - not terribly - but when I would get out of the shower, I would have to lie (lay? - never really sure) down on the bed for a while. Weird.
Anyway, on March 17 - while my friends were getting blottoed since it was one of the greatest holidays EVER - I was visiting ob/gyn Dr. Dinesen.
Great things: He got me in immediately (I had to wait over a month for Ianieri). The waiting room was nice. What I LOVED: the exam room was clean and nice. Dr. Dinesen came in and talked to me while I was still dressed. I told him that I felt I really did have a cyst on my left ovary but it didn't show up on an ultrasound (but it did show up on CAT scan) and he said "Ultrasounds do lie. They lie often." He answered all my questions and when I brought up I might just as well get all my lady parts out since that ovary gave me nothing but trouble and those parts weren't functioning anyway, he agreed and asked that I get cardiac clearance first since I'd had a problem under surgery before. He gave me a NICE pink cloth gown to put on after I got undressed so he could examine me. I was impressed, most ob/gyn give you these horrible paper gowns and are about as comfortable as wearing sand paper.
I liked him a-lot, he was no nonsense yet friendly, and took time to make his patients feel comfortable. Now, the only thing that made me hesitant, was the fact that he was sort of bragging how busy his practice is and how he pays his front office more than what other doctors usually pay - how he spends more (on the gowns/sheets) to make patients feel comfortable. I've been in sales, I've studied marketing and business - so those were things I'd noticed immediately. I felt like he was trying to really sell me on his practice - which actually made me start to question why he felt he had to sell me on it. I believe people should be proud of their accomplishments, and perhaps that was all Dinesen was doing - but it came off just a wee bit like bragging. Looking back now, even though I'd ultimately choose Dr. Ianieri, I would have chosen Dr. Dinesen. But now, I had two conflicting Dr.s - one assuring me taking out my bothersome lady parts was a pro-active plan - the other (whom I didn't trust anyway!) saying nothing was wrong with me and it would be a big mistake to take out my lady parts.
I had the appointment with Dr. Ianieri in April and in the meantime, now would have to get surgery clearance from a cardiac doc (which meant now I needed to find one of those also). Sigh.
One positive thing: I bought an "emerald" ring in the gift shop at the Doylestown hospital. I had nothing green to wear and I wanted a bit of good luck. And...it was 20% off. Hopefully, my luck would be changing!

Doylestown ER - Dr. Jennifer White Restores My Faith In Doctors

On Thursday, March 13 - I was feeling quite crappy. Literally. Running to the bathroom every hour because I had a case of the runs and feeling really bloated and crampy. Still the pain in my lower left area. John invites me out to lunch - anywhere I want to go! I normally love going out to eat but feel so horrible I turn him down.
Around 2 or so, the pain in my lower left is now in my back and upper abdomen. What. The. Fuck. I call Dr. Ukropec. She is with a patient so I leave a message that the pain is bad and should I go to the ER? I'm starting to have shortness of breath - but I'm not sure if this is from the pain or something else is going on. Did something burst inside me? WTF??
While I wait for Ukropec to call - I call Dr. Minissale and they say they can't help me - it doesn't sound like a GI problem because my stool isn't loose and if I'm having trouble breathing, that's not a GI problem. WTF! I'm hesitant to go to the ER again because on March 3rd - Dr. Choi really didn't take me seriously and when the ultrasound didn't show a cyst, I second guessed myself. Maybe I didn't know my body as well as I thought I did.
Finally I give up and go to Doylestown ER.
Dr. Jennifer White is on duty.
She is the doctor that saw me in September 2013 when I initially went in with left sided pain and she had focused on possible kidney stones.
Well, she treated me seriously. She did a contrast CAT scan and did blood work and I was starting to have palpation's so they hooked me up to the heart monitor.
I DID have a cyst on my left ovary after all. It was the same size and in the same place as it was in September. I also had a lesion on my liver (was told not to freak out, it's probably just like a birth mark). And I had a large diverticuliti on my duodenum (which, she thought, might be why I was having upper GI pain as well now).
My red blood cells, hemocrit, and lymphocytes were all abnormal (low).
Now - what I wouldn't know until I requested copies of my report in late July a few months later, was that the EKG came back as abnormal with possible left atrial enlargement).
There was also a mild amount of fluid around my lungs.

She gave me some oxycodne, she gave me the name of her ob/gyn, and she gave me the name of a family doctor. Most importantly, she treated me like a patient and was sympathetic and took my symptoms seriously.

I left feeling hopeful that at least we were on the road to figuring out what was wrong - the faster we pinpointed what was wrong, the faster I could get back to my old energetic self!

While in the ER, I got a voicemail from Dr. Ukropec - she left a message advising me not to go the ER - there was nothing they could do for me.

I couldn't believe it. Seriously??? What doctor would EVER tell a patient who calls complaining of shortness of breath to NOT go to the emergency room? I couldn't fucking believe it. And thank god I had gone, because it showed the cyst, and bruise on my liver, and screwed up blood cell counts, and diverticuli on my duedenum and palpations!!

I really did not like Dr. Ukropec and I could now understand why no one gave her a gift of bacon of the month.

March 11 - GI Doctor Minissale

Not getting any better. The pain in my left side is still bothering me. Growing more tired. I tried communicating with Dr. Ukropic via email but she doesn't seem to think there is anything wrong even though my blood work from the ER shows my cell counts are off and I'm still not getting better. Advice to others: Make sure you find a doctor you like BEFORE you get sick. Though Dr. Notte left and me getting sick was relatively a short time frame, perhaps knowing he was leaving, I should've started asking around. It seems to me that medical care should be very much like choosing a hair stylist or a contractor for your house: Why should I choose you? There should be a consultation in which we discuss their beliefs (are they aggressive in treatment? Do they believe in a wait and see approach? How do they feel about trying natural/nature remedy first?). There should also be price lists. Seriously. This is one big complaint of mine. When I didn't have insurance (I was quite healthy for almost 8 years w/o insurance! Sometimes I feel that having insurance can make you run to the doctor - and many doctors are all too happy too write a prescription or send you for testing when a wait and see approach is actually better). Anyway.
So I ask my friends for family doctor recommendations. Dr. Fissel comes up a few times. I make an appointment, but since I'm "new" even though I'm sick, I have to wait until April 25th. I take it. I make an appointment with an ob/gyn that my sister in law uses who also comes highly recommended - Dr. Ianerei but again - can't get in until April 17th.
My GI doc (who I've been seeing since the incident in September of 2013) fit me in and he thinks my pain is not GI related - no bleeding from my poop chute! He orders blood work for me and suggests I  and wants to schedule me for a colonoscopy.
I totally balk on the colonoscopy. I don't want to be put under anesthesia because of my cardiac history of being put under anesthesia and because he seemed quite convinced it's not GI related.

On March 12 I went to have get my blood work done at Quest (I despise Quest. Again, prices should be listed. There is always a wait. There is only one nice tech who works there. They don't post lab results online and they always try to double bill me. Always.  Abington lab is RIGHT behind the one in Chalfont and the lady is totally nice (I wouldn't discover this till later) and there is never a line and you get your results the NEXT DAY!). I was feeling a bit better on Wednesday. I thought perhaps I was getting better. Yay!
And then Thursday, March 13th rolled around. Now I know why the 13th is an unlucky day - though looking back now, it was probably a lucky day for me!

Ultrasounds Don't Lie!

On the advice of Dr. Minissale (who gave me a few OB/GYN names, it happened to be the first one he gave me) - I went to see Shannon Frederick PAC – Doylestown Gynecology. The reception staff was fabulous and they were kind enough to fit me after I called when I got home from my ER visit on March 3^rd.  On March 5^th, I brought them some homemade coffee cake to show my appreciation for fitting me in and to start, what I had hoped, would be a lifelong relationship with a new gynecologist. Hahahaha.

Shannon Frederick probably had the worst bedside manor ever. I was still having pain, bloating, growing extremely tired. I explained about my lack of periods for the past several years and that in September of 2013 I had a cyst on my ovary. I explained I’d been in the ER a few days before but the ultrasound showed I didn’t have a cyst – but I still felt like I did. She did an exam (painful!) and said she didn’t feel anything and she said, very curtly, “Ultrasounds DON’T lie.”

Now, as a former paramedic, we were always taught: Treat the patient, not the equipment (heart monitor, bp monitor, oxygen monitor, etc). So Shannon made me feel like, well, if the ultrasound didn’t show a cyst (or something wrong) then I guess it must be all in my head.  I left that office like a dog that had just been scolded. She did a pap smear and the one positive was that she sent me to have my blood drawn to see just where my hormones were (why I was only having a period twice a year).

Like I said, fabulous staff, but she made me feel like I was a moron.

“Ultrasounds Don’t Lie!” I will never forget that. And luckily, I would soon meet an Ob/Gyn who did assure me that yes, ultrasounds do lie, and they can lie quite often! 

First ER Visit of 2013

On March 3rd, 2014 - I was having severe lower left side pain and pressure low on my pelvis. My back hurt. Again, it felt like a ruptured cyst.
John and I went to Doylestown ER - and AGAIN, the doctor focused on kidney stones. Sigh. He gave me something for the pain and I had an ultrasound of my kidneys and ovaries. Interestingly enough,there was bilateral hydropnephorosis in my kidneys and my right ureter was mildly dilated. The ultrasound said my ovaries were clear. I was shocked. He told me to take Bentyle (I didn't). My labs did show I had low: white blood cell count, red blood cell count, hemocrat, and high MCH. I also had high leukocyte in my urine (but now, no blood).

I was discharged and decided it might just be time to actually see an OB/GYN and Dr. Minissale. Something was obviously going on.

Dr. Ukropec, Dr. Notte, and Fairy Dust.

Towards the end of February 2014, I started having pain in my lower left side again. Extreme bloating. Very tired. Katie, who had once mentioned she had never seen me cry, saw me breakdown and cry for no reason when we driving to Teds Montana for dinner. I was running to the bathroom frequently and had lower back pain. It was like a urinary tract infection, except I wasn’t having pain while whizzing and I wasn’t running a fever. It felt, again, like a cyst on my ovary had burst.

On Feburary 27^th, 2014, I had my first (and last!) appointment with Dusty Ukropec. Dr. Notte had left and…giving my distrust in general of doctors (see Why I Distrust Doctors) – I wasn’t exactly thrilled, but I was willing to give her a chance.

However, she didn’t even take my temperature (yet suspected UTI)! She jumped right away to my symptoms being a urinary tract infection. I was focused on it being a cyst on my ovary, she was focused on a UTI. She didn’t do an internal. She just pushed around on my abdomen and spent the first 10 minutes of my appointment telling me that Dr. Notte must have had fairy dust sprinkled on him when he was born because he could do no wrong in the eyes of their superiors. Now listen, I was a fan of Dr. Notte, so I didn’t find it appropriate, no matter how much she seemed to be “kidding” – I sensed a very passive aggressive  thread of displaced anger (envy?) toward Notte. Because she then went on to tell me about this time Notte and her worked at some old folks home and all the residents adored Notte and the nurses adored Notte and at the end of their time there, he got a bacon of the month club gift certificate and a plaque and she got nothing! Now, keep in mind, I’m in fucking pain! It takes a-lot to get me to the doctors (see Why I Distrust Doctors!) and now here was my new  “family” doctor – and instead of getting to know MY history, she’s treating me as if I’m her psychologist and she’s complaining about being treated unfairly!

I leave with a script for Cipro that I said I would not fill until the results of my urine test comes back. I go home and realize I didn’t mention that I’ve been getting extremely bloated. So I send her an email and suggest that maybe, because of my mother’s history of uterine/ovarian cancer and because I had a cyst on my ovaries 6 months ago, maybe I should get a CA125 test. She emails me back discouraging (can’t be reliable)  it but ultimately writes me a script to get tested.  I get a call that my urine didn’t test positive for bacteria but it did have blood in it, so now she wants me to get an ultrasound of my bladder and kidneys. Well, I write back asking will this show my ovaries? She says no, she thinks it’s a urinary problem, not female plumbing problem, but since I’m worried about it, she’ll add that to the referral for an ultrasound.

Dusty is so adamant it’s kidney related but I just feel so sure it’s ovarian related – but I start to doubt myself. After all – she’s the doctor. She went to school for medicine. But I never felt she actually listened to me and so I got home and TRY not to focus on the fact I feel terrible, but then I worry that what if something is truly wrong – like it was for my Fran (my mother) and it goes undetected for years? We’re always told to be our own “advocate” yet when we sit in those small doctor offices with some dude or chick who is wearing an white jacket – and try to be our own advocate – we’re told to stop Googling our symptoms, don’t listen to friends or family, and more often than not, don’t even pay attention to our symptoms. We start to question ourselves. And so there I was – caught in the middle of feeling crappy and sure that something was wrong, missing the reassurance of my old family doctor, being told that my symptoms were probably just caused by my hormones (going through the change) – feeling like a freaking idiot but also feeling that I shouldn’t give up on figuring out what was wrong. Making sure this wasn’t ovarian or other female internal junk related – because unlike Fran, if I did have cancer, I knew I would just let nature takes it course. I would not put my body through chemo. If I drink as little as three alcoholic drinks, I wake up the next morning miserable: I’d rather have a great quality of life than a sickly quantity of life. And so I started to request my old records from Doylestown hospital so I could keep track of what was going on…this Dusty hardly knew me. And no one knows your body better than you know yourself. ***looking back in paperwork – the request for ultrasound says I have family hx of cancer but that my menses is normal. The “normal” menses seems to be a thread throughout this journey. I repeatedly tell EVERY doctor that I have not had a normal period for almost 7 years. That I only get my periods twice a year. See, people are NOT listening!!!

The Start Of It All...

It all began on September 12, 2013. I’d been having bad pains in my lower left side all week. I’ve been prone to ovarian cysts so I thought (even though I only have about 2 periods per year) perhaps I had a cyst that had ruptured. 

An odd thing I’d noticed, was that whenever I ate peanut butter (that week, I was on a peanut butter kick: peanut butter on apples, bananas, crackers) I had sharp pains in my lower left side. As a medic, I knew this didn’t seem rational, but my body is not rational anyway. It has so many weird little things wrong with it, I’m thinking my mom may have been given DES when she was young – or maybe that’s just how I am – odd in almost every way. Anyway – long story short – I ended up going to Doylestown ER. Dr. Jennifer White was my doc and for some reason, from the admitting nurse to the doctor, they all seemed focus on kidney stones. I didn’t think it was kidney stones. Other than pain, I had no other symptoms of kidney stones.  I thought it was a cyst that had burst. Or maybe something to do with the peanuts? Maybe I was allergic? 

A cat scan was done and showed a cyst (water density lesion in left adnexa of 17mm diameter (most likely functional was noted on report). No fluid. 

There were no kidney stones. I was given a shot for pain (yay – it wiped the pain right out!). Dr. White thought I should see a GI doc and an OB/GYN. She was totally nice (though I was 100% sure it was NOT kidney stones and had been frustrated that they zeroed in on that). 

I went home with some oxycodone (12 pills that lasted me until the end of July 2014!). I didn’t bother to ask for copies of my medical reports. I should have done that. 

I followed up with Dr. Minissale Jr who is with Central Bucks Speicalists. He had a great bedside manor. He expressed disappointment that my CAT scan wasn’t done with contrast. After being examined, while I was still in the room, he dictated a memo to my Doctor Notte (my family doctor). I wish I would have asked for a copy of that too (I would, but not until much later when things started going wrong). I would have discovered that besides the cyst on my ovary, I also had what looked to be a duodenal diverticulum (this is a pouch on the “pipe” that leads to my intestines). I had no idea about this. After my visit with Dr. M (who advised I see an OB/GYN) – I stopped eating peanuts and my pain slowly resolved. Blood work that Dr. M ran showed I was a bit low on my vitamin B12 and iron and to start taking supplement. I was negative for celiac disease. 

All was pretty well the rest of the fall/winter – aside from this total lack of focus. I wouldn’t say I was depressed, and I was still mostly a positive happy person, but suddenly I found I didn’t want to go out and drink with friends and family. I was working part time at Wegmans and by the time I came home, all I wanted to do was sit on the couch with a bowl of popcorn and watch some behavioral TV (trashy reality shows) and just tune out. I did visit Dr. Notte sometime in the winter…I suggested maybe I needed Adderall – maybe that would give me some energy and help me focus. I hated that I wanted to do a million things but lacked the focus or drive to actually accomplish anything. Dr. Notte suggested I should see a behavioral doctor – he thought maybe I was just really sad over Obama winning and it had sucked the air out of my balloon so to speak. I had laughed. Maybe. Perhaps. I didn’t want to see a psychologist; my experience with counselors has been horrible. There was the wonky eyed marriage counselor who was going to counsel me and my ex – but I couldn’t take her seriously when she admitted she had been divorced 3 times. Anyway, the holidays came and went, and after the start of the new year, I was looking forward to the 2014. I had a burst of renewed energy! This was going to be my best year ever. I was going to write a book a month. Start doing videos again. Rich Zeoli of 1210 am radio had contacted me and asked me to do a weekly spot on his radio show. Radio sucks, by the way, very difficult because it’s live and you can’t “see” your audience. But then, during the month of February, I started experiencing pains in my left side again. And this time it was also in my lower back and right over my pubic bone. No fever though. It felt like a UTI but I wasn’t passing blood and I didn’t have a fever. So I didn’t really think it was a UTI. It was like that cyst was back again. 

After about two weeks, I finally gave in and called the Family Care Medical Center. Dr. Notte had left (which I knew, and was terribly sad as he was the best family Doc I’d ever had – big personality and very much a family man) and I made an appointment with Dr. Dusty Ukropec (she is a female – which shocked the doctors at Doylestown ER who always thought “Dusty was a man.”) and then I spent the month of March in the ER and the month of April visiting doctors…and this is my diary. I’m actually writing this on August 5th, 2014. 10 days prior to surgery to take out all my internal lady parts. I’m panicked I 

A) Have Cancer

B) Will die during surgery

C) Something will go horribly wrong during surgery and leave me with a colostomy or as a paraplegic. 

John says I’m totally fine. Just over reacting. Possibly. Hopefully! I hope I look back at this and laugh – but honestly, even if the surgery goes awesomely well – there is a lot to learn from my journey these last few months. From the awful way I was treated a few times, to the importance of obtaining copies of your own records, to the obscure and at times confusing medical journey – and why is it that I feel no one is LISTENING to me. Do I have to be a bitch in order to be taken seriously? It shouldn't have to be that way. Anyway, with the internet and social media, we…the everyday American who doesn't have elite doctor connections or vast boatloads of money, do have access to something just as powerful: our voice. Our voices, our stories, will help other people navigate through their journey to health. I hesitated to write this because I didn't want to offend or worse, cause medical personal for treating me differently – but shouldn't those in the medical community treat every patient as if every patient DOES have a voice and will use it? I know as a paramedic, I wasn't perfect on every call, but 95% of the time, I treated a patient as if they were my best friend or my favorite family member. The other 5% were frequent drug addicts or drunks or asked me to take their trash out before I wheeled them out the door. 

I’ll be dating these posts as they happened – and luckily I have a 2014 Yearly/daily planner that I had hoped to fill with the ticking off  of my goals of writing new books each month, shooting new videos, etc – but it turned into a doctor visit planner. And once I started getting my reports, I created a binder to organize all my test results and ER visits. Look, don’t leave it in the hands of the doctors – just like everything in life – this is up to you to be in charge of. The more knowledge you have, the more power and control you have. I have no quirky witty way to end this post, so I’ll just leave it with this: if you haven’t already started keeping track of your medical stuff – go forth and buy a big ass binder (or a little one if you’re quite healthy – good for you and your big nose) – some plastic sheet protectors, and some pocket divide tabs. Get organized, get proactive, and be the guide and the guard to your health.