A Story of a Frustrated Patient

Well as mentioned in my previous post, I thought I was sick and tired of being sick and tired.  In actuality, in this past month, I have instead grown sick and tired of not getting the appropriate health care I feel I am paying for.  I am frustrated and infuriated.  I went to my first cardiac rehab meeting on the 15th and the nurses decided that I was not ready to officially start until the situation with my colon and the pain caused by it, was under control.  So the following post is the story of me trying just that...to get my pain managed and discover the source of it.  Well so far, not so good.

Ever since at least July when I had my gallbladder out, if not before, my stomach has been very sore to the touch.  But the last weeks of January, as I started doing Yoga, not only did the pain start to increase, but I was able to pinpoint where the pain was coming  from.  I gave it a few days to see if the pain would subside, but the opposite occurred.  I decided to call my GI and schedule an appointment.  I was seen by a very nice nurse practitioner around Jan 27th, who was not sure what this was, but her guess was an ulcer. She proceeded to schedule an X-ray and an ultrasound within the week (Feb.7th).  If I was in good health the NP would have gone straight to scheduling the colonoscopy and endoscopy, but she decided to rule out anything that could be detected by non-invasive tests first. I was told to follow up with her in one week to go over the results.  Instead the office scheduled my next appointment a month later, sadly I didn't realize this until I made it home.  Luckily, with some persistence, I was able to make the appointment two weeks after I saw her which was somewhat of an improvement, but this time with a different nurse practitioner aT a different office.

So I managed to get a second appointment instead of March 1st, it was now for Feb. 13th.  By this time, my pain was still increasing, but now I had severe nausea accompanying the existing symptoms.  My pain was and is so bad that when the doctor presses on my stomach, it instantly brings me to tears, and I have a pretty high tolerance for pain.  The nurse called in the doctor who was there to briefly check over me.  He prescribed me painkillers and nausea medicine, and scheduled a CT scan the following day.  He specifically told me to follow up in one week with my original doctor who I had seen in July and December.  Instead, they schedule my next appointment another month out to see another nurse practitioner.  I was not at all happy nor satisfied with this, so I demanded to be seen sooner due to my pain.  After a few phone calls they were able to squeeze me in, in one of there nine offices to see yet another nurse practitioner I had never seen on Feb 20th.

The nurse practitioner I saw this time was very brief with me, and treated my symptoms as if they were mild or not so bothersome.  She told me if the Scopes don't show anything  there were no more options, oh and by the way we found a cyst on your left ovary and then she left the room, not to be seen again.  Well I know cysts are common and most everyone women has one, but she could have given me a little more detail, like if I need to follow up with an OBGYN or something?  So I was shoveled to the scheduler for the Scopes and was told May 8th was the soonest they could operate.  This was really when the frustration kicked in.  Not only have I not been able to consult with my doctor about my severe pain I'm in, I have to be in this severe pain for over 2 1/2 months.  That's a hell of a long time to be on painkillers.  They said there was nothing more they could do for me.  After an attempt to contact my doctor directly and a long phone call with his nurse, his office finally squeezed me in between two of his appointments and they also informed me that the cyst is normal but yes, I should get it checked out by my OBGYN.

So Wednesday I go in at 10:30 to see my practicing doctor, the one who will actually be performing the Colonoscopy/Endoscopy.  My goal is that he'll recognize my level of pain and hopefully decide that these scopes need to be pretty urgent.  If not, than I don't know what to do.  Maybe I'll go to another GI practice or check into the ER.  But either way, out of all the many doctors I have seen, this is the most disrespected I have ever felt.  I feel like my pain does not matter, I feel like my health does not matter, and I am sick and tired of this place and cannot wait until I do not have to go back.  In which case I do hope there is in fact a day I do not have to go back to them

So to sum this up, within a month's time I have seen 3 different nurse practitioners at 3 different office locations, one doctor that is not my practicing doctor there, and I'm about to go in for another visit to see my actual doctor, for the first time since my intense pain has started.  Not only that, if I had left the original scheduled appointments as is, I still wouldn't of had my second appointment until March 1st, meaning I wouldn't of had my CT scan until the end of the first week of March.  This is CRAZY!!!  I don't get how they throw me on painkillers and then not be able to do a Scope until May.  I have way too many obligations before hand, a trip to Montana/Seattle, Cardiac Rehab, and a speech at the annual ARVD conference in Baltimore.  I'm sorry but May will not work for me, I need to figure out what is wrong..NOW!

Anyone know someone who does Scopes on the black market?

Well, I went to the doctor today and it didn't go quite as expected.  I still have to wait a few weeks to get my Scopes done, and this doctor said he is not in the business of pain management, so no more painkillers for me. I guess the waiting begins.  I was also bought plane tickets to Montana and Seattle for March 12th-20th but I'm starting to get worried those plans are about to fall through.  Luckily, I bought insurance, but I'm hoping I won't have to worry about that...we will see.  The story of my life!

No...I Don't Have a Job.

The answer is no.  I do not have a job.  I get asked this weekly by many different people, friends, doctors, relatives, you name it, and the answer is always the same, no.  It's one thing when you're making conversation, it's another when you expect that of me while I am still trying to figure out how to comfortably manage my new life. 

I have taken all my health issues and my drastic life changes in stride, but I will admit I am starting to get a little sick and tired of actually being sick and tired.  But what's more frustrating than anything right now, is everyone I come across asking me if I'm back to work yet.  Just a little reminder, it has only been  seven months since my Tachycardia subsided thanks to incredible surgeons and a 12 hour surgery at Johns Hopkins...12 HOURS.  Before the surgery however, it was normal for my heart to race around 180 bpm while simply lying in bed.  That's nearly tripled the normal heart rate. 

Just nine months ago, I was getting zapped by my defibrillator, causing me to have phantom shocks for two months.  I was taking anti-arrhythmics; side effects being sleepless nights accompanied with zero energy during the day. I felt as close as one could to a walking Zombie.  I still have a great deal of anxiety, thousands of PVC's daily (skipped heartbeats), and I can't exercise, which makes my weight hard to manage. 

With that said, I think it will be okay if I decide not to work for awhile.  Not only will it be okay, I believe it is somewhat normal for someone to stay out of work for a year or two after having six surgeries, multiple diagnosis, and a heart that forever will be unstable.  Not to mention I do not have the emotional or physical stability for a job.  Even though I am off my anti-arrhythmics, I am still on a very high dose of blood pressure medicine to keep my adrenaline at bay.  Therefore, whenever I do have enough energy to do something,  I in turn am worn out the following  day or two.  So I ask, how can I possibly work a 40-hour work week when I don't even have enough strength to go out for a walk every day? 

I just want to live simply, like in the days of Andy Griffith and Barney Fife, where it was  suitable to sit by a pond all day, everyday, whistling all your cares away.  I find it saddening that all we do is work.  We work almost our entire lives.  We work when we're sick, we work in poor weather, we work on holidays, we work when family members are ill and /or dying, we work way more than 40-hour work weeks.  We work for decades in order to retire at an age where we are almost too old to even go out and enjoy new adventures we saved our whole lives for.  When will we say it is acceptable not to work? 

With a staggering unemployment rate, even if I was healthy, it would still be difficult to find a job.  And with all the stigmas that come with being unemployed, every time I am asked about a job and I respond, "No, I don't have one," I feel as though it is an admission of laziness.  Well damn it,  I'm disabled.  I have three incurable diseases, I have a life that spun out of control, I have been shocked 11 times,  I have crazy anxiety, I can't exercise, I'm trying to manage my weight through all this as well as my emotions, and this has all taken place in a year and three months, so let me take two years off and collect some damn disability.  

Quit expecting me to go back to work simply because that's what we, Americans, do.  I'll work when I'm fully ready and capable.  Can't people just be sick anymore these days, while having the pleasure not to worry about employment.  I already had to file for bankruptcy to pay for medical bills.  Let me enjoy what little time I can without a job.  Life will never be the same for me, and with this disease I might have to start working at a place I really dislike, which I absolutely do not want to do.  So, I am taking this time to figure out what I want to do with myself, trying to find an acceptable new direction in life.  Because as a year ago, my life got flipped upside down and I will never be able to go back to living and working where I was,  or where I want to be.  I will always need doctors close by and I will always have to have health insurance.  

So if you see me...don't ask me if I have started working.  If I want to talk about it, I will bring it up on my own accord.  I'm still sick.  I probably won't start looking for a job until I am entirely confident in my health, so deal with it.  As long as I'm happy through all this, isn't that the only thing that should matter at this point.  Obtaining a job is not even close to making it on my To Do List as of now.  It's my body, it's my life, and I will make the choices I think are appropriate, and getting a job right now is not the appropriate choice.  However, enrolling in Cardiac Rehab is, and that's exactly what I'm focusing on, as long as insurance will cover it, that is.

Well now that I've gotten that off my chest...I feel pretty good!