Goodbye Wonky Lady Parts!

Well. I did not die in surgery.
I really thought I was going to. And more often than not (as my family can attest!) I often am able to oddly predict things (though John always complains that I'm unable to predict the lottery numbers)

So all those Circus Peanuts, Twizzlers, ice cream, potato chips I ate thinking it was my last time on Earth, are now clinging to my thighs saying, "Haha, don't believe everything your "sick" sense tells you. Sick sense is like "sixth" sense - get it? Unless you are on Oxycodone you probably won't.

Anyway. I not only didn't die, but my surgery allegedly went fantastically. I was asleep, so what do I know? I had no adhesion's, and even my cysts had disappeared. UPDATE: 8/29/2014 - I received a copy of the pathology report, actually, I did, indeed have cysts. I had cysts in both fallopian tubes, in my follicles, and I also had fibroids and mild cystic cervicitis and benign basal endometrium (say that 5 times fast!). Remnants of the hemorrhagic cyst remained.
I am so glad that I asked for the report, because had I not, I would have wondered if the CAT scans had been wrong, if the pain had been in my head, etc... End of Update 8/29/2014

WHAT?

Dr. Ianieri assured me that cysts pop up and go away quickly, so this made me rethink everything. Perhaps all the abdominal pain had been the cysts coming/going. It's just a bit odd since one box of tampons has lasted me 2 years.

I'm praying giving my lady parts the boot will resolve the lower left abdominal pain. If not. I'm done. I'm tired of being poked, prodded, and that getting a second opinion often is so opposite from the first opinion that a third opinion is required.

Anyway, back to surgery:

Doylestown staff is quite awesome. For the most part. I mean, nothing is perfect (other than, of course, my Jewish Apple Cake) , I try to keep that in mind. Nurses/staff prior to surgery, in recovery, and in my room, were awesome.

I came out of anesthesia and I didn't feel that bad! As the night wore on, however, I spiked a fever, started having irregular heartbeats (oddly prior to surgery, my heart was smooth and not spazzing out!)

(I did go into an arrhythmia under anethisa, but they were able to take care of it. I know this only because someone told be while in recovery. I was a bit spaced out, so I'm not sure exactly what happened, but would have loved to have been given paperwork so I could share it with my cardiologist and keep it in my file. They gave me my blood work results when I was discharged (which I thought was great! Didn't even have to ask!) and my red cells and hemoglobin were down - my white cells were all over the place. I expected that, though. I've finally come to understand this is simply how my body reacts to infection/injury.)

I felt so horrible as the night wore on, I considered asking them to put me in a coma until my body adjusted itself. But then my fever went down, my heart stopped being irritable, and I was able to watch the Food Network so all was good.

I felt much better as the morning wore on. I was eating! Eggs! Bacon! Pizza! Then I went home. Slept all of Saturday. Sunday was horrible. My fever came back, the only thing I could eat were popsicles and then I promptly threw them all up.

Thank God for Ambien. I went to sleep that night, woke up Monday, and my fever was gone. I was now walking without pain and by Tuesday, I could lie on my sides in bed. Today - 7 days after surgery, and the pain is hardly noticeable. I'm dying to walk Jack (who has been pouting since last Friday when I skipped his daily walk - the first time since June!) but he weighs like, 80 pounds, and he pulls (bad training - I know this is my fault!). My anemia has set in, however, and this is the frustrating part. After I do anything minimal; dishes, walk (I'm up to 10 houses), shower, I have to take a break. I have shortness of breath (almost feels like a chest cold). But no fever. And so, other than WANTING to do more but not wanting to overdo it and make recovery longer, I'm doing fantastic - if I do say so myself.

This has been a crazy journey. Learned so many things (good and bad) about navigating the medical system - how important communication is (and how lacking it can be which only adds to more grief!).

Most importantly, I think I've FINALLY learned how to spell Dr. Ianieri's last name. Ian. IE (i before e), RI (Rhode Island).  Pronouncing it, however, is still a bit tricky.

Love Dr. Ianieri!!

These Are OR Scrubs...Oh, Are They?

The pains in my lower left side - let's just call it what it is, my freaking ovary - though never really left, started to rage again in early July.
To the point where, if I didn't have pain meds, I would be ending up in the ER again. I made an appointment with Dr. Ianieri. My blood pressure was so low, the nurse called in another nurse to take my blood pressure - 90/60.
I assured them it was normally low - perhaps not THAT low, but it wasn't too far off and I didn't think they should be pulling out the MAST pants.
Dr. Ianieri and I discussed the hysterectomy again. I voiced my concern that the cyst didn't seem to have gone away and I was not getting my period - maybe we should just go ahead and take everything out.
She agreed.
I did mention I was worried about my wonky heart history during surgery and my low red cell counts, but she said if the cardiac docs had given the green light, it shouldn't be a problem.
She asked me to get another ultrasound just to see where things were. We scheduled the appoinment for September.
On 7/25 I got another ultrasound.
Now, when I went in, the tech said, "You're having right sided pain?"
And I explained, no, it was left side. It has always been left side, but ONE medical record from 9/12/13 mistakenly noted that it was right flank pain.
I also explained I'd had a cyst that measure the same dimensions on CAT scans done on 9/12/13 and on 3/13/14 but that an ultrasound on 3/4/14 had missed the cyst.

Well, there was a cyst on my left ovary. This report said it was complex and hemorrhagic and just about the same size as what the CAT scans had reported. The 7/25 report said it was a "new" cyst, but how can they tell? I mean, possibly, but it seems strange that I'm not getting periods yet I'm frequently getting cysts on my ovaries and have constant pain - just some days worse than others with back pain  and shooting pain down my leg. I asked to move the surgery up. With the ongoing pain and now that the cyst was complex, better to get it out asap.

I wondered if perhaps this is what was causing my blood work to be off? Could it be that my body kept trying to fight the cyst?

On July 25th - I had a pre-op meeting with Dr. Ianieri. John came with me. I had questions and concerns: Is the low red cell count anything to worry about? No.
I asked about the cyst being new (are we sure it's not the same cyst that's been there since at least last September?) - she said that cysts come and go with periods. I had to remind her I wasn't getting my period. Which gave me some anxiety. Then she talked to me about what we were going to remove during the surgery as if suggesting we take it all, when I'd already agreed to that. She assured me I didn't have cancer. When John and I left, I was totally anxiety ridden.
It was almost as if she had totally forgotten our previous appointments.
"You're just nervous. Remember you said you totally liked her just a few weeks ago."
And I had. And I did. I do.
I had preadmissions blood work and an EKG done and the blood test results showed my red cells had come up to just the acceptable bottom limit, but now my white cells are low. Geez lousie.
But I am concerned that I'm still having palpations. That my red blood cells are still struggling. I'm petrified I'm going to go into cardiac arrest during surgery. Or that my body will shut down after surgery.
The good thing is, I've been eating Oreos and Twizzlers and really appreciating each day. I've been stocking up on trash magazines to read in the optimistic hope I will recover and I'm actually excited I'll be able to watch REAL TV in my hospital room. I'm excited Katie is going to be staying with me and making ME dinner for a change (nothing to exotic, just comfort food like Spaghettios with franks and Kraft mac n cheese).
And as John reminds me, it could be worse...it could be WAY WORSE: I could be living in a prison in China where they shoot the prisoners and then don't even bother to knock them out while they have student doctors try to repair them.
That John, always the eternal voice of rationality.

Neurotic Heart

Listen, because I was told "your palpations are "just a thing" -nothing to worry about...and because I know from being a paramedic that YES, some people do have excitable hearts...I believed the cardiac doc's in 2006 when they said my cardiac problems weren't really problems.
It wasn't until I had to get surgical clearance for my hysterectomy that I started to request reports that had been done. Now, granted, there weren't GLARING red flags - but there always seemed to be something a bit off. And in the EKG report from my visit on 3/13/2014 (there were two, interestingly enough) - one said their might be possible left atrium enlargement.
Dr. Kmetzo and Jennifer Brown didn't take me seriously; and I  had planned to see a cardiac doc affilated with Abington, wondering if perhaps Doylestown docs would stand as a united front in the case that something HAD been overlooked.
But then I realized the cyst on my ovary needed to come out sooner rather than later and I didn't really have time to start all over again with an Abington practice (not to mention my surgery was going to be done in Doylestown).
So I went to see Dr. Renee Sangrigoli with Doylestown Cardiology Associates for "surgery" clearance on the advice of Dr. Dinesen.
Well, she didn't even listen to my heart. LOL. I shouldn't laugh - but it's just so ridiculous that these doctors do NOTHING to alleviate anxiety. I guess she reviewed my medical charts because I handed her the reports from my arrhythmia during surgery and she barely glanced at them. I explained I was worried about my heart during surgery and she said there was nothing to worry about - I simply had a spot in my heart that often misfired but it wasn't anything that couldn't be easily managed. She gave me a form clearing me for surgery.
You hear that heart? You are fine. Stop over-reacting!

May - June -July

As the spring turned into summer and I forced myself to stop focusing on my health, I started to feel better. The start of May was rough. I still felt impending doom and cleared out and cleaned out my closets. I started to write my dying book again, and bounced between trying to get as much done as I could to simply enjoying each day for what it was.
But slowly, I started to find I wasn't scared I was going to have a heart attack while driving, my energy was picking up, my palpations slowed, as the days became warmer, my hands and feet started to warm and I started to be able to walk Jack and not become out of breath.
Things were starting to look up.
In July, however, I had an episode where I had severe pains in the middle of my chest. I'd eaten peanut butter and attributed the pains to the diverticulium.
Though I knew about this - it had really never been explained by Dr. Minissale what it was and how it would affect me.  The most he ever said was, "This should not be causing your problems."
So I went to see Dr. Fissel and touched base with him. I made an appointment to see Dr. Nack (new GI, trying to switch everything over to the Abington system) - but it wouldn't be until August that I could see him. Dr. Fissel was intrigued because he had never seen a diverticulium that large from the spot it was in.
By the time I saw Dr. Fissel, however, the pain had subsided. He wrote me a script for pain meds (over the counter meds doesn't ease that pain). Since I'd been feeling much more energetic - we decided to check my bloodwork and see if things had improved.
They did a bit - my red cell count was just a bit below normal, but my vitamin D was actually low, and my MVP was also low. My iron saturation had come up to normal levels though.
Yay. Progress!

Finish Line! Dr. Fissel -

Finally - on April 24th I met with the very last doctor I had "booked" when things first started going south for me back in February. Dr. Fissel came highly recommended and it seemed everyone I knew was seeing him. It was even revealed to me that a few of the doctors I had seen were patients of Dr. Fissel and his partners!
The location was close to home. The front office staff - very nice! The nurse, very nice! And Dr. Fissel listened. At this point, it was simply me explaining what I had been going through - all the doctors I had seen. I also told him that I was done for awhile. I had spent almost 2 months doing nothing but visiting specialists, trying to find a new family doctor, and becoming apprehensive about Doylestown's medical system.

I had learned that Abington and Doylestown didn't exactly share information freely and easily. I supposed it was like the Flyers vs the Penguins. There was a sort of rivalry.

I wanted to take a break from health issues. And then perhaps in a few months, I'd start over again. I'd see a cardiac person from the Abington system and an Ob/Gyn from the Abington system. I was still concerned about my heart and wanted to get to the root of the cause of the fluttering. And though I liked both Dr. Ianieri and Dr. Dinesen, perhaps it would be best if all my medical docs were all through the same system...it made sense.

I left without any more insight into what was causing my body to be misbehavin, but I did leave relieved that finally, FINALLY, I had a family doctor that was close to home, that listened, that had a personality, that had a great staff.

Hematologist - Dr. Zipin

On April 21st I saw Dr. Zipin - a hematologist at Alliance Cancer Specialists. Since March, my red blood cells had been consistently low, yet my iron and b12's were fine but my iron saturation was low.  My white cells went from low to high to normal.
I waited for almost an hour past my scheduled time (and I'd arrived 15 minutes early). I'd had to fill out about a 20 page report prior to my arrival (seriously, if all this shit is online through their freaking online webportals, why do I have to constantly fill out paperwork?) - I described my symptoms - fatigue, palpations, coldness, shortness of breath, bloating, and he...pretty much dismissed me. Once again, I felt like here was a doctor focused on what the 'equipment' was telling them. YES, my blood work was abnormal, but only slightly. If something was really wrong, the number would be off the chart. I wondered if there was some sort of flag in their system that advised doctors "Don't reassure this patient that all is well, instead, make her feel like she is wasting your valuable time."
Well, the bright side was, I could knock this doctor off my list.
I'd seen a GI.
I'd seen (several) Ob/Gyn
I'd seen cardiac.
I'd seen family doctors.

No one could accuse me of NOT trying to seek a solution!

Smorgasbord of Medicine

On Friday - I took all my scripts for antibiotics from various doctors and decided to fill them. I wasn't getting better - maybe if I took the antibiotics, I'd knock out whatever it was that was going on. Then when I picked them up, I read the warnings. I should not be taking them if I had heart arrhythmias. Oh for fucks sake.
I hate antibiotics anyway. I promptly put them in the "save for the Apocalypse" spot in the closet and forget about them.
I did, however, fill the lopressor medication as the palpations were still really bothering me. Since I wasn't a medic any longer (I didn't like taking them when I was a medic because they made me lightheaded and dizzy) - I figured I could take them as long as I didn't plan on driving and could lay down if I got dizzy.
I also decided to stop taking all vitamins. My iron and B12 levels were great, so that wasn't a problem. Maybe if I just cleared out my system...

Dr. Ianieri

Dr. Ianieri (I've still no idea how to pronounce it, and forget spelling it!) came highly recommended by my sister in law. She was great. Down to earth. I filled her in on what had been going on and said that I was leaning toward a hysterectomy but the fact was, I was so tired of doctors at this point, I just wanted a breather. I have her copies of my lab reports, copies of my CAT scan and mentioned I was worried about the cyst, but she seemed to feel it was small enough and nothing to worry about. When I was ready to talk about surgery, or if anything happened in the meantime, touch base with her again.
She was super nice, down to earth - she felt more like a person you'd want to have a drink with than a doctor you'd want to spread your legs for!
She started to restore my faith in the Doylestown medical community.

Dr. Laura Freed

The days following my halter monitor incident were not great. I was increasingly getting cold hands/feet - it seemed following anytime I would eat, about and hour later I'd have palpations and coldness would set in. My blood pressure was really low - averaging in around 96/60. The left side of my heart felt like it was shearing off on April 14th. I'd become super bloated when eating, and of course, the pain in my left side was still present, though it would come and ago and felt like it was the least of my worries at this point.
I'd started keeping a food diary (could it be food?) - and symptom log. I Just. Wanted. To. Get. Better. It was really getting ridiculous. I wanted answers. If I could just figure out what the fuck was wrong I tried to figure out how to make it right. I spent the "good" hours I had on Google reading about symptoms and signs and stories of other people who had gone through similar things. I was pretty confident by this time, I was a licensed Google doctor, having logged in enough hours to earn my own white coat (see what I did there?).
The good thing about searching the internet; it gave me comfort and hope. The bad thing - it worried me that so many people were frustrated with the health care system - and if it (the health care system) was overloaded now, what the heck was going to happen when EVERYONE had health care and the government stepped in to become the head of the serpent?
Arrghhh!

Blood Doesn't Affect Your Heart!

On the morning of April 11th (Friday) - my palpations were in full swing and now I also had this odd warming sensation around my heart. My calves were cramping, and I'd been using two pillows to prop myself up at night to make it easier to breathe.
I called Dr. Kmetzo's office and they said they could fit me in at the Chalfont office with CRNP Jennifer Brown.
I went in for an appointment and while Brown was nice - I found it interesting that she didn't take my blood pressure, didn't take my pulse ox when I had told her my history of anemia. She told me blood counts don't matter (really? because I was pretty sure that an infected/injured heart could affect blood cells and be the cause of anemia) She didn't put me on a heart monitor but she did listen to my heart with a stethoscope and said she did hear PVC's. She sent me home with a halter monitor but because we didn't have a home phone, I'd have to drop off the monitor to download it after I had recorded 5 episodes of PVC's. WHAT? FIVE episodes? My heart was beating irregularly constantly! I'd be back in a freaking hour! She gave me a prescription for Lopressor even though I explained I had LOW BLOOD pressure and they tried to put me on that back in 2006 and it only made me dizzy. Sigh.
I put it on, left, went home. Had a few episodes of fluttering on my way home, recorded it, and when I got home, took it off, walked Jack, (and while walking, the fluttering seems to calm down) and then put it on. Well, in less than half an hour, I had used up all "Five" slots and now had to go download the halter monitor to free up room. God, this was ridiculous. Would I be running back and forth all day? All weekend?
I sat outside and tried to wait out the fluttering. I hated to go back to the office. It wasn't getting better, however, it was getting worse.
I decided to drop off the monitor and while driving over (a short 10 minute drive) - my arm was tingling, I was having heaviness in my chest. When I went in to turn in the monitor, I asked if they could put me on a monitor - I explained the symptoms I was having.  They hooked me up to take a 12 second strip and I wasn't surprised when it didn't show my PVC's (as those quick strips never do). I asked if they could hook me up to a regular monitor and they said they don't have one. What? Isn't that kind of like going to an ice cream shop and finding out they don't have any ice cream dippers? They didn't take my blood pressure, they didn't check a pulse ox. I was complaining of trouble breathing and they didn't even offer me any oxygen. I knew they probably thought I was having an anxiety attack (hmmm, would anxiety cause me to go into bigmeny and trigemeny while under anesthesia?) - but even if I was having an anxiety attack - I knew from my work as a paramedic, be calm with the patient, be reassuring, and put an oxygen mask on their face but don't give them oxygen...often that will call them down.
I got none of that. I got this:
"Have a seat in the waiting room and wait for Brown."
Ok.
Twenty minutes later, the anger I was feeling at the way I'd been dismissed and not taken seriously did not help my heart which was now bounding out of my chest. I asked for a copy of my halter monitor report and said that I was leaving. They gave me the report (it showed I had multiple PVC's) and off I went. I considered going to the ER - but after the visit on March 31st - I worried I would be taken as seriously as the staff at Central Bucks Cardiology treated me. My had lost most of my faith in Doylestown doctors. With the exception of Dr. Jennifer White and Dr. Dinesen. I had one last doctor to see, Dr. Ianieri. She would be the last ob/gyn and be the tie breaker on if I should have a complete hysterectomy. I'd made the appointment over a month ago - I was tempted to just cancel it and give up on everything Doylestown, but my sister in law had loved her so I was willing to give it a chance.

Nuclear Cardiac Stress Test

The morning of April 9th, I had a cardiac stress test at the Womens Health Center in Warrington. I love the place. It's got a gym, a cafe, a pond. It's gorgeous. This test went something like this: inject stuff into my veins, take pictures of my heart, then run on a treadmill. The report said that there were rare PAC's throughout.
I realized I should have made the appointment for the end of the day - that's when I was experiencing most of my palpations. And the funny thing, when I exercised or walked, I was usually able to stop the palpations. The staff was very friendly and they had great magazines to read that were up to date (really, this is important when you have to wait).

Something That Will Change Your Life

On April 3rd, I really thought I was dying. I sat outside and started to write to my kids - the last, best advice I could ever give to them.
I was angry and confused and sad and my heart was skipping constantly. By the afternoons I could barely lift my head off the couch. I had spent all of March trying to find answers - trying to find the a new family doctor that ticked all the right boxes (close to home, great character, communicator, nice staff).
The pain in my left side came and went, but wasn't as bothersome as my heart. I really struggled to walk Jack, my breath always coming up short.
I only wrote a few pages before I was too tired to continue. And wondered if it mattered anyway.
Then guess what? I didn't die!
I went to bed early (Ambien!) and the next morning, got up and was fine in the morning. Then in the afternoon - I was back to writing my dying notes again.
But I didn't die.
This cycle would continue a few weeks more. I started to bruise horribly. Became weaker. My heart was wonky all month long, many nights around 5-7pm it would race, I'd feel pain, and thought, "This is it!" I'd lie down and either prepare to die (I was pretty accepting by this point) or not. Obviously, I didn't die.
I'd go from wanting to figure out whatever it was so I could find a way to make myself better - to wanting to just STOP trying to figure it out and just let whatever happen, happen. Just as my health bounced back and forth, my will bounced back and forth.

One thing I did decide, was to write a book about my experience...when you think you're going to die, you start to question everything. You discover what is important. Your go over choices you've made.

I've try to be that person that takes lemons and makes lemonade - that person that sees the sliver lining in every cloud. I'd found much solace in searching online for people going through what I was going through. Other people sharing their stories was HUGE. It gave me hope. It gave me knowledge. It gave me optimism.

But it seemed kinda ridiculous to write a book about dying when I had no idea if I was dying. I mean, we are all terminal, right? We are all dying.

But what if whatever it is I had was just a virus that was hanging on like an ex-boyfriend who refuses to accept he's no longer wanted?

I started and stopped my book; Something That Will Change Your Life (man, that is the BEST TITLE EVER!) many times. I have notebooks filled with advice on power, on sex, on love, on independence, on being authentic. I couldn't somehow loop them together though. I was also worried they weren't perfect - and I didn't feel I had the energy to revise and rewrite. And that brain fog, man, I just couldn't get passed it.

I was terribly disappointed that, at the start of 2014 - I had been set on making 2014 my best year EVER! I was going to write a book a month, make more videos, I was going to run for president (just to make a point that politics is a joke).

Ah, the best laid plans...

I guess my point to this entry is that all of April (and the rest of the summer, as a matter of fact) - I spent in some odd suspension. Afraid to tell my story -because I didn't want to piss off doctors and/or the medical profession-and I didn't want them to treat me (or worse NOT treat me) because I share my experiences. I was afraid that there is nothing seriously wrong after all. I was afraid that if I do have limited time left - maybe I should be spending it simply reading and doing things that make me happy. Eating Twizzlers. Oreos. Fried chicken. Drinking. Whoohoo! But then...what if I didn't die? Then I'd just have to lose weight again! And I could have accomplished SOMETHING. So basically, I ended up spending most of the summer battling myself, and going back and forth between having faith in myself to doubting myself. To getting things done to really slacking (watching Big Brother Live Feeds - total slacker). The one thing I can say with pride is that I walked Jack every day in July, so far everyday of August (writing this on August 12th) and everyday but 2 days of June. That's something I guess!

Dr. Rachel Notte (part 2)

A follow up with Dr. Notte on April 2nd. I'm still feeling miserable. The very odd thing is that in the morning, it's like I'm healed. I''m perfect. Every morning I think I'm imagining things. But then by afternoon - WHAM. I slow down, my heart goes into palpations, I become very cold (mostly my hands/feet). My brain is in a total fog.
The recent visit to the ER shows again that my blood work is abnormal.
Dr. Notte sends me for lab work. She wants to rule out that it might be a neurological condition. I wonder if I should see a hematologist? She recommends a few. I explain to her that I do have an appointment with Dr. Brett Fissel at the end of April. He was recommended by several friends and he is much closer to me. I'd made the appointment prior to her accepting me into her practice. She is totally okay with that (probably relieved!) and is understanding.

Doctor Rachel Notte would later communicate my blood test results and even when so far as to send me a personal text wishing me luck. I can't say enough good things about her and her husband (Dr. Chris Notte). They are caring, very family oriented, smart, and actually treat people like...people!

If I had enough money, I'd sign them both up for bacon of the month club!

March 31st - MRI and ER Visit - Mean Jean (worst mean nurse EVER!) Doylestown ER

On March 31st - I reported to Doylestown hospital early in the morning for an MRI. I was feeling good (I usually did in the mornings). The guy doing the MRI asked me what kind of music I wanted to listen to. I picked Country. Turns out, he LOVED Country music and so we started talking about what concerts he'd been to, who he liked the best. He was very cool and made me feel totally at ease. Funny thing was, he mentioned also why I would be getting an MRI if I'd already had a CAT scan. I, who generally felt I was "in the know" when it came to my health (getting copies of reports/labs/etc) started to question if I was really as proactive as I thought. Two medical people questioned why I was getting an MRI when a CAT scan had already shown what was wrong. But here's the thing - I'd liked Dr. Minissale, so when he said, "Get an MRI" - I just said, "Okay!" Perhaps I should have asked why, and what information would it provide that wasn't provided by the CAT scan...

Anyway. After the MRI, they gave me a copy of the MRI on CD so I could give it to any doctor who may ask for it in the future. I thought that was awesome. I think we should automatically receive copies of our labs/EKG/reports - we shouldn't have to request them.

I'm in a great mood. I'm feeling positive! I feel I'm NOT dying! I get home and go on line and start to work and I'm working for about an hour when suddenly - I feel 3 strong very forceful palpitations from my heart.  BOOM! BOOM! BOOM!

What. The. Fuck.
I had to fast the night before the MRI and had been given injection dye. After the MRI, I had a Diet Coke...I wonder if perhaps it's the caffeine on an empty stomach? I wait for it to pass but those three original palpitations seemed to set off a constant parade of palpitations. Fuck! I don't have time for this! I just WANT TO GET BACK ON TRACK WITH LIFE AND FEEL HEALTHY AGAIN. I take a Xanax and lay (lie) down. They don't go away. Now I'm having shortness of breath but think this is because I'm beginning to become fearful. What if this is the end? Should I go to the ER? Should I wait for it to pass? What if I was having a heart attack and am wasting time. But what if it was just my excitable heart being...well, excitable?
Finally, I turn to John and say, "Let's go - just to make sure."
Of COURSE, on the way over, my heart starts to calm down a bit.
Upon arriving at Doylestown ER, they hook me up to a monitor and take a quick look at my heart. It looks good. It ALWAYS does when they do this. Back in 2006 when I was in ER for palpitations, they did the same thing and everything looked fine. Then they hooked me up to bedside monitor and the PVC's were so frequent they kept setting off alarms!
They take me to a room, hook me up to the monitor and things look ok. A bit fast, a rare PVC, but nothing for me to freak out about. The nurse, Jean, seems really annoyed by me. Is it because this is my third visit in a month? Perhaps. But I'm being extremely co-operative and nice (as I always am). I worked in EMS, I know ER nurses and docs are often overwhelmed and are treated like crap from a few patients (and nurses are treated like crap from some docs too). But man, is this old lady nurse named Jean REALLY giving me attitude. My blood work comes back - my red cells and my  hemocrit are down and my MCH is high. This concerns me. During my other 2 ER visits, my blood work came back abnormal also. SOMETHING WAS WRONG. Since the end of February when this all started, I'd seen 7 doctors, been in the ER 3times, and though everyone seemed to admit something was wrong, no one could seem to figure out WHAT.
Dr. McHugh was the ER doc and he seemed nice enough - but very busy. He sent me for a chest Xray and when I came back - I was suddenly thirsty and had a raging headache. My blood pressure (which is normally 90/60 - was now 134/86. My heart rate was climbing - I felt the pounding in my chest and started to panic. I buzzed the nurse. Jean came in all but rolling her eyes. "Yes?"
"My blood pressure shot up, I have a sudden headache - my heart is racing." - I pointed to the monitor which my heart rate was 140 and rising.
She sighed as if I'd just told her I shit the bed and she'd have to clean it up.
"It's just because you're in the hospital - your blood pressure is actually fine."
"Not for me, my pressure is very low normally."
"Well, your fine."
OHMYFUCKINGGOD. She was a royal bitch and instead of calming me down or reassuring me, she was making my situation WORSE. When she left, I took out my iPhone and recorded the SVT rhythm that my heart was now in. I buzzed again.
Jean shuffled in. "I want a new nurse - you're not taking me seriously."
"Fine."
In comes the nurse in charge. She took Jean's side. She was a bitch too. I couldn't believe this. I wasn't in the ER looking for drugs. I didn't get any and didn't ask for any. What I wanted was answers and to be assured I wasn't having a fucking heart attack! And instead of calming me, they were provoking me.
Dr. McHugh came in the room and said all reports (except my labs) looked fine and I was free to go. He saw the SVT on the monitor and while he talked to me, the rate slowly climbed down. While he was nice enough, and I understand there's really not much he could have done, he failed to mention my run of SVT in the report. Nor did he mention in the report the spike in my blood pressure. The EKG report mentioned that my ST was now depressed when compared to the EKG they had taken on 3/13/2014.
The nurse that came in to give me my discharge papers was very very cool. He explained that Jean was close to retiring and she wasn't just that way with me, she was that way with most people. He said the staff had the same complaints about her!
I left that ER feeling beaten, mortified, embarrassed, and angry. Now I seriously was starting to distrust the Doylestown medical system. Again, the reason why I'm frustrated is that when it comes to my cardiac history, I went to Doylestown ER in 2006 with palpations, followed up with cardiac testing only to be told it was "nothing" and "harmless" - so I believed this. Then when I had surgery in 2007 - I went into bigemny and trigemny under anesthesia. Even when I came out of that, I blew it off because I was told a year prior, all was well. So the past few years, I shrugged off palpitations and now am wondering...wait, could it be my heart causing all this abnormal blood work? Is my heart causing my fatigue, and anemia? And yet, I guess because there is no OBVIOUS flags (I'm not unresponsive!) they just send me on my merry way.

DR. Kmetzo

On March 25 I had two appointments: Dr. Kmetzo a cardiologist and Dr. Eddy - a family doctor that was recommended by Dr. Jennifer White.
This entry is about Dr. Kmetzo.

I needed to see a cardiac doctor to clear me for surgery because of my cardiac history.

Dr. Kmetzo was recommended by a friend of the family. Later, when I decided to really get pro-active about becoming in charge of my health, I would learn that Dr. Kmetzo had reviewed my echocardiography report that I'd had on 10/23/2006. It noted mild mitral, tricuspid, and pulmonic regurgitation and mild buckling to the mitral valve (I was never told about this, however, I wouldn't learn this until 8 years later after searching for and requesting reports).

Kmetzo was nice enough. His nurse who set up the EKG was totally nice. Had just moved to the area and she was very friendly.

Kmetzo - he was okay. Not a great bedside manner, but not a cold one either. He seemed a bit dismissive of me - a young cheeful woman healthy woman compared to the 80 year old blue haired wispy ladies using oxygen tanks shuffling in the waiting room.

He gave me a script for a Nuclear Stress test.

Dr. Eddy - Thin Office Walls

Though I really like Dr. Rachel Notte - her office was quite a distance away. I'd made an appointment with Dr. Jarrod Eddy on the advice of Dr. Jennifer White from the Doylestown ER. She seemed to really like him.

While I liked Eddy - I disliked IMMENSELY the office. When I walked in, the receptionist at the window was leaving a message about a medical issue on someones voicemail. She said, "Hi Mr. Mercury, we have your test results back. You do an pneumonia and we've called in a prescription for..." (I've fictionalized the name and medical condition) - I was horrified. Though in a day and age where we seem to give up privacy freely (Facebook, Four Square (now Swarm) Twitter, etc) - I do feel there should still be some privacy and the doctors office should certainly be one of them! The waiting room was just...blah. Horrible music playing. And it smelled like diapers. Dirty diapers.
I waited about 15 minutes for the doctor. I don't usually mind waiting if there are good magazines, but there were none.
The exam room was horrible. Looked like it had been around since 1966. I was given a paper thin gown and told to wait. While I sat on the exam table in the horrible flimsy paper gown (this was a far cry from Dr. Notte interviewing me while I had all my clothes ON first) I waited. Again. And while I waited, I could hear someone getting upset in another room about someone not calling back her mother about a message. There was an argument. Again, I was mortified that I could hear SO MUCH. Dr. Eddy finally came in after about 15 minutes and apologized for running late. He seemed to think my symptoms pointed to a hernia. He gave me some Xanax for my palpitations and/or two take 2 prior to bedtime (I wanted to try and get off Ambien). . He also gave me a script for Protonix something for acid reflux (I didn't fill that script). He told me NOT to take any antibiotics - he thought what ever was wrong with me didn't need any Cipro or anything similar.
He questioned why Dr. Minissale was sending me for an MRII had no idea. I was going for the MRI because Dr. Minissale recommended I go for an MRI.
"You don't need the MRI. The CAT scan you've had already shows you have diverticuli and a hematoma on your liver. I don't really think you need the MRI."

Huh. Now I was confused. Did I really need an MRI? Now again, I had conflicting ideas from different doctors about what was possibly wrong with me. The only one thing I knew for sure, I was super tired of doctors, and getting no better.

I liked Dr. Eddy - but I did not like (at all!) the lack of privacy from the front office leaving messages right in front of waiting patients to the thin exam walls that allowed me to hear a very unhappy patient to the crappy exam rooms.

Dr. Rachel Notte - Super Smart & Fairy Dusted

On March 20th - I had an appointment with Dr. Rachel Notte. She is the wife of my former family Dr. - Dr. Christopher Notte (whom most people love - must be that fairy dust Dr. Ukropec states was sprinkled in his hair!).

At this point in my medical journey - I'm still searching for a new family doctor; it's important to me that I feel I can trust my family doctor. That we mesh. That they listen.

She is not taking new patients - so I was very grateful that she made an exception to see me. Her office is located in Warminster and that's about a half n hour from my house. During my illness - I've become very apprehensive about driving. Not only am I tired, but my heart palpitations have started to return and I'm scared to death that I'll have some sort of attack while driving. My mind has been very forgetful also, and I've been having trouble "finding" the right words - I know what I want to say, but I can't seem to get the correct word out. The pain in my lower left comes and goes and it also seems to hover right above my pelvic bone. Most troublesome is that when I try to walk Jack, I become very short of breath, and in the shower, short of breath and have to lay (lie?) down for about 20 minutes after I shower. In the morning, I have energy and feel like I'm fine - but around noon - I start a fast slide downhill - my heart races, become exhausted, the pain increases, it's crazy.

Anway - the front office staff at Dr. Notte's is great. Super sweet and friendly. The exam rooms are nice. Clean. Dr. Notte spoke with me for about an hour - while I was fully dressed! I love when doctors talk to you while you are wearing clothes BEFORE they exam you. It makes you feel like they are treating you with respect - and not like you're simply a medical object. Dr. Notte really listened. And I mean, I threw a-lot at her - my cardiac history, my gyn history, my current pain, symptoms, my abnormal labs. Can I just point out - she's married to a doctor and has two children? I don't know how she does it - but she does and she does it brilliantly!

She ordered more lab tests and I made a follow up appointment. I think she might have fairy dust in her her also.

Dr. Gerstein - One More Time!

After seeing Dr. Dinesen, I got a call the next day from Doylestown Gynecology. They wanted to know why Dr. Dinesen was requesting a transfer of my records. I was honest. I told them about my horrible experience with PAC Frederick.

They asked for another chance.  So, I was quite touched that they actually wanted to win my business back and so, on March 19th, 2014,  I went to see Dr. Gerstein. She was extremely nice. Really took time to talk to me...but, honestly, she didn't seem to take my symptoms seriously and tried to talk me out of hysterectomy (which I was considering and which Dr. Dinesen had agreed given my family history and my current problems and ongoing cyst, it might be a good thing). She also totally contradicted Dinesen and backed up Frederick and said, "Ultrasounds Don't Lie, CAT scans do!" So I decided to get a third opinion and in between that time of waiting to see the new doctor - the cyst is now complex and hemorrhagic. So, I can't recommend this practice who kept assuring me there was nothing to worry about and didn't take my concerns at all seriously (and they also tried to point out Dr. Dinesen delivers babies and they do NOT, implying that my best bet is their practice because he is so busy). Also, people, remember you are your own best advocate and know your body best!

(update: On July 25 2014, that cyst that allegedly didn't show up on the ultrasound on March 4th, yet showed up on CAT scans, is now reported to be a complex hemorrhagic cysts after a second ultrasound). 

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.