It’s been three years and two months since I was diagnosed with Severe Rheumatoid Arthritis. Sometimes that time frame seems like a very long time, while at other times it seems like it’s flown past. I can’t tell you how many doctors visits there have been in those thirty-eight months, though I’m sure its well into the hundreds. Which also means hundreds if not thousands of blood tests. Cat scans, x-rays, MRI’s and EKG’s number in the double digits. And let’s not forget two hospital stays and close to twenty Emergency Room visits.
Needless to say, I have a very thick medical record. Assembled over the course of these three years, it contains everything. The hospital where I primarily receive my care, as well as my mom, keep these identical records. My mom, whom is also my primary caretaker, is an exceptional organizer and note taker. She has kept every lab result, doctors summary, and consult record ever produced by the twelve doctors that we keep on retainer. Yeah, that’s right, I see twelve doctors, regularly. Maybe not every week, but most definitely every quarter.
Why, you may ask?
Cause I’m really sick.
And one of the only upsides of this fact is that I don’t usually have to explain myself upon arrival at a medical facility for treatment. They have everything on file, and if for some reason they can’t find it, well then there’s always Mom, patiently waiting in the wings to remind them of every little medical fact pertaining to my case.
Of course, it wasn’t always like that. I haven’t always had the best of luck in Emergency Rooms, Infusion Centers, and Medical Offices. There are some people who are eager to help, and some who’ve become jaded over the years. But that’s where Mom always comes in handy. Because if I’m slumped over in excruciating pain, or gasping for breath, or vomiting into a plastic kidney bean shaped tray, sure enough there is Mom by my side explaining exactly what’s happening to a nurse or doctor. She is my voice, my advocate, when I cannot speak for myself.
And unfortunately, patients of invisible illnesses can’t always speak for ourselves and be heard the way we should. Nurses and doctors see us in waiting rooms, sitting quietly, with maybe a frown on our faces, a peaked pallor, but nothing that constitutes an ’emergency’. Then they hear our complaints… chronic pain, fever, nausea, vomiting, hot sweats, cold chills, inability to move our limbs, inflamed joints… Well, if to the unknown eye we look normal on the outside, and we go into an ER complaining of severe pain and sickness, guess where their heads go?
That’s right, I must be a drug addict looking for a fix. Because of course there’s no way I could be legitimately ill looking the way I do right? Don’t take into account that I’ve been placed in a wheelchair because my feet are too swollen to put weight on them, or that my face is flushed with fever, or that I’m so dehydrated you can’t find a vein to establish an IV line. That would be too easy.
Fortunately for me, I usually have Mom, whom right off the bat reminds the staff that my medical record is on file, which prescriptions I’m taking, what my severe diseases are, and what has inflicted me that day and my reason for being there. They usually take notice when you have an advocate. Someone who will most certainly remember their moves and choices. Who will keep them in check. That way if I dose off (which happens every time they give me medications), or my pain makes it impossible for me to concentrate, I still have someone fighting for me.
Except last week, when I didn’t. On a rare, fluke occasion, I ended up at the Emergency Room without an advocate or aide. And that day I learned how very important it was to have someone with you.
At 5:06pm, last Saturday, I checked into the Queens Medical Center Emergency Room, with severe side pain due to rib fractures. I already knew what was going on as I had only been there two days prior. I’d fractured two ribs in my back. But because my blood tests had been flagged for possible blood clots, the doctor had told me to come back in right away if the pain got worse and I was feverish. Well, by early afternoon that day I was 2-2, so I ordered an Uber, and headed back down to the ER.
To my surprise, it was very quiet in the waiting room, with only a few patients/visitors seated. I was called almost immediately into one of the preliminary exam rooms, and a nurse started taking my vitals. I explained to her why I was there, stressing that the ER doctor from two days ago insisted that I come back in if I felt more pain. I also told her that it felt very much like I had broken more than just the bones in my back, but that my front rib cage hurt very much as well. She nodded, typed some notes in her computer, and went in search of a doctor, I presumed.
Only a few minutes later did a doctor come into the room. I was shocked at how quickly I was being seen, as the Emergency Room had never been so efficient before. The man introduced himself as an ER doctor and then flat out asked me what pain killer I’d prefer. Baffled at his question I asked what he meant. He again asked which pain killer I’d like to be given, and then started listing some of the well-known opiates that the hospital had on hand.
I was confused. Why wasn’t he examining me? Why weren’t they drawing blood or ordering x-rays? I asked as much and he just sorta looked at me for a minute, like he was trying to read my thoughts. I repeated my questions, Was I going to get another chest x-ray? Should we do another blood test to check for clots?
The second line of questioning seemed to grab his attention, and he agreed that a new chest x-Ray would be a good idea but that there was no point in doing any blood work. He then asked me again which pain killer I’d prefer, this time giving me a choice between two. I reluctantly chose one, verbally stating that I didn’t think it was necessary since pain killers hadn’t worked on me in a long time. Moments later a nurse appeared, and gave me a shot in the muscle in the upper part of my left arm. As expected, the pain killer provided no relief.
I was given another chest x-ray following the shot, and then was escorted to the waiting room for the results. At this point I’d been in the ER for a total of 82 minutes. I waited patiently in the waiting room, until the doctor and a nurse came out to talk to me. They didn’t take me aside for privacy, just sat down next to me in the waiting room to give me the diagnosis. I had been right. I had broken more bones in the two days since I’d last been there. The doctor thought my front ribs may have had a displacement fracture that fully broke apart in the two previous days. He then asked what kind of pain killers I wanted prescribed, AGAIN.
I was exasperated. I wasn’t there to get high on opiates! Did they not realize I was on a strict regime of medications daily for my Rheumatoid Disease?! A shot here and there of Dilaudid and Fentanyl weren’t exactly doing me any favors when I’d been on the highest dose available oh Methadone for the last two years. It was like offering me Skittles or M&M’s for the pain. I didn’t need a pathetic sugar rush, thank you very much.
At 6:58pm I was discharged from the Emergency Room. Less than two hours after arrival. No blood drawn, no IV line with fluids to keep me hydrated, no labs, and a quick 2min chest x-ray. I’ve never been seen or treated (if that’s what you want to call it) in such a short time frame. And I 100% believe it was because I had no one there to speak for me. They wanted me in and out as quick as possible. If it weren’t for the fact that I did actually have a new fracture, I’m sure they would have attempted to completely treat me from the waiting room alone.
Now I’m one of those people that doesn’t go to the emergency room unless I’m having a legitimate emergency. I hate it when people waste hospital resources on bad colds, the flu, or a twisted ankle. These are all ailments a PCP can take care of Monday through Friday. The only reason I went in that Saturday was the doctor told me two days before that if I had a fever and my pain worsened then I had to come in to make sure it wasn’t an emergency like a blood clot.
But being treated like a drug addict looking for my next fix is unacceptable. I told that doctor and those nurses that I came in per the last doctors request. That I’d been running a fever, and thought I’d broken more bones. At no point did I ask for pain medication. And when offered it I turned it down because I wanted to know what was wrong, not just put a drug bandaid on the problem. And this is let the first time this has happened, nor do I expect it to be the last.
I know that the state of Hawaii has a major meth problem, and that the hospital emergency rooms on island deal with overdoses in excess, as well as the homeless trying to get their next fix. But just because it’s a problem that they continually deal with, I shouldn’t have to be abused by that stigma. There are legitimately sick people that go to emergency rooms and urgent care facilities to address their legitimite illnesses. We shouldn’t have to convince medical professionals that we want medical attention, I mean that’s why you go to an ER in the first place.
I don’t know who is more the problem. Is it the medical professionals that attach the stigma to us as people who just need a drug dose instead of legitimate care because that’s what’s they are used to? Is it the homeless and/or drug addicts that abuse the hospitality of hospitals where they can get water/food, and maybe even a bed for a few hours, while trying coercion tactics for their next fix? Or isn’t the healthcare system itself, deeming which patients are more important, who should be seen quickly and who should be shown the door?
I just feel that more harm than good is resulting from all of this. Especially as another day passes where I’m in the ER having to explain my severe medical condition to get another doctor who refused to look at my medical record to see that I’m a legitimate patient. I shouldn’t have to beg to be seen and/or treated. When did my rights as a patient get pushed to the side? Why do I always feel victimized when leaving the hospital?
Enough is enough.
“No Doctor, I would not like a shot of Dilaudid for the road home. I’ll just take my x-rays that proved I was right, and that I do have broken bones, and be on my way. Thank you for making me feel like my ailments weren’t as important as that meth addicts’ in the corner over there. Perhaps he’d like the pain shot you keep trying to push on me.”
**The x-ray on the left was taken on Thursday and the one on the right, two days later on Saturday. In the bottom right hand corner of Thursday’s x-ray you can see that the bone is intact, while on Saturday’s you can see the fresh break. Proof of my severe Osteoporosis. Only two days apart with no accidents or falls- a full break of rib bones.**
If you would like to help support me medically/financially in my journey, please visit my page at http://www.gofundme.com/sixthousandsteps. Thank you.