Chronic illness and waiting until the last possible minute for care

I grew up in a medical household, my dad is a (now retired) firefighter and my mom is a nurse; when my parents divorced, my mom decided to go back to school to fulfill her childhood dream to become a medical professional. She also wanted to be self-sufficient, she never wanted to be one of those woman whose only means of finances was to rely on a man.

 She was NEVER going to be one of those women who were too weak to make it on their own.

I remember the day she was accepted into the program, I was about 9 years old, I also distinctly remember the hours she spent studying;  she would often hand me one of her notebooks filled with notes and would ask me to help her with a test she had the following day.

. What 9 year old knows what  acetylsalicylic acid is? This one did!!

The thing about having medical people as your parents is that they see the sick of the sick, my dad scraped body parts off the highway and my mom took care of some really sick people. For the family members this means one has to be bleeding out of their eyeballs in order to get any kind of medical care at home. Now, I am not saying I was "medically neglected", I wasn't but my mom and dad never rushed out at the first cough to get antibiotics. They knew these things had a natural course and with or without medication, the trajectory of my runny nose was going to be the same. 


This has been my attitude pretty much all my life. I adapted the same non-hysteria treatment with my kids, luckily, they weren't sick children. They went to the Dr when it was appropriate. I think that in the 24 years I have been a parent, my kids have used antibiotics MAYBE three times; collectively. 


Through my life, the only time I went to the Dr was when I broke something. Actually, the first time I broke my tailbone I did not even alert my parents, I dealt with it, I was 16 at the time and did not have time to go to the Dr., that and my mom did not seem it was odd I was crawling to the bathroom.

 The second time, I was 26 and bringing up a new family, I just did not have time. I dealt with the pain (I used to have an incredibly high pain threshold) and lived my life.

Then my back went, I lived with horrid back pain for about 10 years before I woke up one morning with a totally numb leg. Heck, even waking up with foot drop and a numb leg STILL did not bring me into the ER 'til well later into the night. I really thought the pins and needles thing would go away.

I ended up in emergency surgery the next morning, I am fortunate the outcome was good, but I can not help to feel that had I taken care of it when the symptoms started, I would not have as much numbness in my leg today.

When my Graves disease hit, I ignored those signs and diagnoses for a year, ended up with a thyroid storm and in the hospital for a week. Twice, Heck, even with the storm, I ignored the serious heart-attack like symptoms for a few days before I felt it was time to do something about it.
Luckily, the Graves has been in remission for over a year.

I am not one to ask for expensive tests, I am not one to want to be diagnosed with this and that and as I dive headfirst into seeing nearly every specialist out there, the diagnoses are going to rack up.

This past year has been a medical challenge, finding a PCP who will fit all my criteria, was a difficult process.  One woman,  all she wanted to do was send me to the ER, then I was chastised by an ER physician...for going to the ER when in the middle of a hypertensive emergency.

Another PCP Dr  lied to me. Well, that ended the therapeutic relationship pretty quickly. Another provider had a lying medical assistant, that  right off ruined what could have been a good relationship with an APRN I REALLY liked.

 Yet another medical assistant felt it was appropriate to suggest specific medications for blood pressure when I wasn't even seeing the physician for BP. Outside the scope of her practice much?

 Yeah, it was suggested to me that I let the providers know of these blights....the only thing that comes out of complaining to a Dr about their staff, is obtaining a reputation of being a difficult patient. Once one gets that moniker attached to their name (verbally or notated on chart), the patient is the one who suffers greatly. Any physician who reads that will become judgemental, dismissive and ones medical care will suffer when a patient is labeled "manipulative", despite the absence of secondary gain, or any other behavior suggested as such-the medical world looks at you differently. There are no two sides to every story written on a medical chart.

 But that is for another blog.

In order to try and get over my distrust of the medical community, I have taken to reading blogs from doctors and nurses as well as other patients who suffer from rare chronic diseases. I desperately want to have good relationships with my providers. At this point, I really have no choice. I can not longer ignore the constellation of symptoms I face every single day. After spending hours reading these blogs and message boards, it is clear that the problem is pervasive.  There is a HUGE disconnect between people with chronic illnesses and the medical staff that they go to.

Take a look at what this "physician" writes about Fibromyalgia; Douchebag ER Doc . Sadly, this is a common attitude among physicians who are not up on the recent research. I do not have fibro, but I have friends who do and I know the devastating effects it can have on people. This "Dr" eventually stopped blogging because he was tired of the "douchebag" commenters calling him out on his crap.

We have all seen the "I'M LEAVING BUT BEFORE I DO I AM GOING TO THROW A FIT BECAUSE YOU'RE MAKING FUN OF ME" tirade that some histrionic people use on message boards...well, that is exactly what he did, after putting out an incredibly insulting post (I understand gallows humor, he is not showing gallows humor at all)...he went and played the victim. Poor him.

I work in behavioral health, I have taken abuse from many of the people I have worked with, I have NEVER treated anyone poorly while in my position. I have had feces thrown at me, called horrible names, had a non-ambulatory patient launch themselves out of their wheelchair to aim for my hair which took me down quickly. (I had my hands up the whole time, there was no way I could defend myself against this woman-it would have been abuse), I have had money stolen and have been falsely accused and honestly manipulated;  It is part of my job....I knew that from day one. So the excuse of "it is hard to work in the medical community" is simply bullshit.

I will not lower my standards because someone is burnt out, incompetent and has lost their humanity.

I have also read some incredibly compassionate blogs from doctors who are tired of the abuse some of their colleagues deal out on a regular basis. These are the doctors, nurses and medical assistants that I want on my team.  These are the professionals who will dig their heels in to get a diagnoses, the ones who will advocate for their patients, the ones who will admit they are frustrated with the system as well. The ones who will not slam a window in your face as you are checking in for an appointment. The ones who listen to their patients concerns and are genuinely interested in helping people.

I have had excellent medical care from some physicians, I know they are out there.

My job is to find them and to be compliant with a care plan that will someday be in place. I am taking a proactive approach to addressing my physician - induced anxiety and I am hoping is works. Finding a PCP was my first step and I really lucked out with him- my condition involves the potential for frequent ER visits, anaphylaxis is no joke....the link above represents the attitude some ER docs have  towards  people with chronic illnesses, I have been treated terribly at ER's, so have nearly all of my friends who suffer from chronic illnesses...and this is not acceptable.

These physicians are a danger to the community, they cause harm....being treated poorly by those in a position of power (they have your health in their hands) is a traumatic experience and has the potential to prevent someone from seeking the medical attention they need to breath.(medical PTSD is very real with those who have chronic illnesses) It is the VERY reason I put off going to the ER for my thyroid storm.

 I can not allow the sins of the past to get in the way of having my life saved. It has been suggested to me that I meet with the nurse manager as well as the ER Chief to let them know the acceptable protocol for treating my emergencies. What I am being diagnosed for is extremely rare and it would be unreasonable for me to think all doctors know how to properly treat me in the ED...educating them and giving a warning, I feel is a fair way to handle this. I hope they are receptive to this.

Maybe after this happens I will no longer wait until the last possible minute to seek care, perhaps it will cut my anxiety and improve my relationship with the medical community.

Time will tell