We had a wonderful Halloween, delayed a couple of days due to Hurricane Sandy. For the first time since Tyler has been trick-or-treating I was well enough to walk with him, after either being pushed by Grant in a wheelchair when he went trick-or-treating in the Freehold Raceway Mall when we lived in New Jersey, or just driving along while he and Grant went door to door. I barely felt the cold or my pain as we walked for nearly two hours.
On Monday the pain was worse. I kept it to myself and continued to do the household necessities but all day the pain was increasing and slowly making me manic, probably because I was internalizing it so much.
On Monday night, when I thought I would soon start screaming from the pain, I asked Grant to take me to the hospital. Because I have felt relatively pain free for so many months I have no more pain medication. I am uninsured until I receive my Social Security Disability Insurance, and so I have health care through a free clinic organization. But because so many of the people that go to the free clinic are alcoholics and drug addicts they do not write pain prescriptions for anyone. My doctor told me that his hands were tied and that I should go to the emergency room if my pain got unbearable.
And so I went to the emergency room of one of the satellite locations of the highly regarded Cleveland Clinic. When we got there at 6:45 p.m.it was extremely busy. I had brought my medical records along to prove to them that I had the diagnoses I claim to have so that they would believe me and give me pain medication. I was having pain from the Myofascial Pain, Lupus and Interstitial Cystitis. At that point I could barely stand or walk.
I had the initial check-in, I told the woman that I was here because of pain. “Where is your pain?”, she asked. “It is diffuse”, I told her. “Well, tell me where.” “My calves, my feet, my hands, my bladder, do you want me to keep going? I mean, the only place that doesn’t hurt is my face. The pain is from my Lupus, Interstitial Cystitis and Myofascial Pain Syndrome.”
She told me to have a seat and I would be called in to have my vital signs taken, tell the nurse what was going on, etc. As I waited the pain started to get very bad. The only way I could get comfortable in any way was to take another chair and put my legs on the armrests, my legs spread wide open. The Myofascial pain was affecting me in a way similar to labor. When my muscles would contract I would peak to a pain level of 10, and I would scream with tears streaming down my face, and then the contraction would subside and my pain level would be about an 8.
I got called by the nurse and I could barely communicate to her through my screams and cries. She ran out of the room and came back and said that I would be the next one to have a bed, but to go back to the waiting room. That was 7:15 p.m.
I continued to scream, cry and beg for someone to help me. There was another woman there in a wheelchair, in pain and screaming as well. She had been there when I got there and was saying things like, “It hurts so much, I have been waiting so long!”, and the person she was with kept trying to calm her down. Her cries upset and scared me as I wondered why no one was taking her back to a bed. The other patients, other than a woman who was drunk, were quiet, working on their laptops, talking on their cell phones or reading or watching television.
I waited for my bed and the contractions were almost constant. With my legs spread and my contractions, I wondered if people were thinking that I was having a baby in the waiting room. And I wascompletely embarrassedthat I looked like that but I could not help it!
A few times, four to be exact, Grant approached the front desk and begged them to help me. He said that not only was I in great pain but that I was also mentally ill and he feared this stress would break me. I felt so badly for him because he was watching me writhe and he was absolutely powerless to help me. They told him they had a triage system. This begged the question, “There are only two people screaming in your waiting room and you keep taking the other people so what is your method of triage?” When he came up a fourth time the man at the front desk said, “Sir, I am sorry but I am going to have to ask you to wait outside of the waiting room because you are interfering with patient care.”
Aren’t I a patient? Where is my care?!?!?!
Eventually the other screaming woman got taken back.
Finally Grant just went home, I mean if he could no longer be with me to hold my hand and to try to soothe me, what was the point? He told me to ask for a patient advocate, because at this point I was going up to them saying:
“What is your method of triage, I am the only one screaming in this waiting room.”
“Ma’am, there are many people being brought in by ambulance.”
“That’s fine but what is your method of triage for the waiting room because I am the only one here that is screaming!!!”
The patient advocate came and while very nice, she still could not explain to me their method of triage. I asked her is their method of triage based on my inability to pay and she assured me that that was not the case. I asked her after all of this waiting, would they treat me with pain medication and she said yes. I told her how difficult it was being a person with Invisible Illness, not looking like I am sick and making someone believe I needed the pain medicine I said I needed. She said they were doing everything they could to find me a bed and that many of the patients were being admitted to the hospital.
“I don’t need a hospital bed, I am not expecting to be admitted. Here are my medical records that prove I have the diagnoses I claim that I have. All you have to do is give me pain medication and I will leave!”
She said she would do everything she could and left.
I still waited. I had been there over four hours, still the only one screaming. At this point everyone, including people who came in after me had been taken back and there were just about three or four new people waiting.
I went up to the man at the front desk and said I was about to go home, but that I would wait if he felt there was a possibility that I would get pain relief and he said yes, they would most likely give me something for the pain. Since there were no more patients coming in I asked him why I had waited so long, why were so many new patients taken before me?
He said, “Well, you already know what’s wrong with you. Most of the people coming in here don’t. When people come in here with chest pains they may be having a heart attack. And so, if more people come in with chest pains they WILL be seen before you.”
I walked away stunned. I thought, they immediately give people who are having chest pains an EKG. If they are not having a heart attack they come back out into the waiting room. Their pain gets better and so they sit, with their laptops or on their smartphones, or watching t.v. or reading. They are calm and peaceful, and yet they let the WOMAN WHO HAS LUPUS SCREAM FOR HOURS BECAUSE SHE KNOWS SHE HAS LUPUS!!!
I also thought, If I already know what is wrong with me, if I do not require any testing, or pondering, then why not just treat me so I could leave? This should have taken an hour’s time from start to finish. I would not have taken up a bed for very long and then they could have quickly moved on.
After nearly six hours of waiting they finally took me in. They were all very apologetic, but I knew it was mostly because they feared I would sue them. I was treated by a Physician’s Assistant, I told him about my diagnoses and my pain and I asked if he would be able to treat me and he said he would. I was so relieved, all of this waiting had been horrendous but now I would have something for this horrific pain!
He went away and a nurse came in and he told me he was going to give me two shots, one for the pain and one to sedate me. I did not recognize the names. Due to my Fibromyalgia the shots were extremely painful.
Then the doctor came in. He sat at my bedside and said, “Emily, my wife has Lupus and Rheumatoid Arthritis.” “That’s what I have,” I said. “I know. So I understand how very bad your pain must be. The problem is that Ohio has the highest rate of deaths in the country due to narcotics abuse. And because of this it is against the law for me to prescribe narcotics in the emergency room.”
I couldn’t believe it! If they knew that they would not be able to adequately treat the pain I was having (because most every doctor, nurse and administrator had witnessed it) then WHY had they let me sit there in the waiting room screaming all night??? WHY didn’t they tell me, “We’re sorry, but you might as well go home, because we can’t give you anything that will even begin to touch the pain you are having.”??
The doctor said to me, “The thing is, if you had broken your arm I would have written you a prescription for narcotics, but we are not allowed to treat people like you who are just having pain.”
I have broken my arm, my friends, I have broken my leg and my fingers, and let me tell you, THIS PAIN IS FAR, FAR WORSE! How could one small broken bone compare to pain throughout my body???
The doctor left and the nurse said I could leave. “Are you feeling any pain relief?”, he asked and I told him no, I wasn’t. They gave me prescriptions that were little stronger than Tylenol which I decided not to fill. I do not have health insurance and if the drugs that they shot me up with did nothing, why would drugs that were weaker help me?
So I called Grant and he came and took me home, actually worse than when I came in due to the mental anguish, and the pain from the shots flaring my Fibromyalgia.
I wanted to call The Cleveland Plain Dealer. I wanted to complain to the top of the Cleveland Clinic’s administration, but in the end I realized that there was nothing to complain about. Because that is their triage system, and I highly doubt that I would be able to change it.
The only things I can think of to do is to share my story with some kind of chronic pain foundation, and if you know of whom I should tell my experience to, please let me know.
And if you read this and feel that what happened to me and to others like me is unjust and inhumane, please share it with everyone you feel needs to see it.
One of the Cleveland Clinic’s Logos. Courtesy of the Cleveland Clinic’s “About” Google+ Page