Life’s Learning Moments…

Life has a tendency to throw us curve balls…lemons….  Having read a post online about medical misdiagnoses and mistakes that medical personnel have made, it blew my mind. I don’t doubt there are many mistakes that have been made along the way but reading about them and some being so ridiculously careless and neglectful reminds me that doctors are human. Doctors are flawed. They are not perfect machines that know everything and can tell you exactly what ails you. They are indeed…”practicing.”

I have had hip pain for many many years. Over 4 years ago, it became constant. Pain meds help but no true explanation has been given. I have bilateral labral tears and bone marrow edema in my pelvic bones. Rheumatology cleared me of those diseases and orthopedics didnt’ think the labral tears were causing all the issues I had going on and didn’t think I’d be ready or benefit from the surgery so I pressed on.

Four days ago, the pain intensified out of nowhere. Tripled in strength, knocked me down and took my breath away. It feels like there is something sitting in my pelvis, expanding my pelvic bones and ripping them open. My left leg is intensely painful all the way to my heel. There is a specific area on my upper femur bone that is intensely painful deep inside.  In addition, I’m having sudden lower back pain and left sided abdominal pain that can get quite intense. It hurts. It hurts considerably and this time, my pain meds do not touch it.

I bared it 3 days, each night increasing in it’s intensity leaving me breathless and frozen in pain. I didn’t want to go through another night like that as the pain seems to double by evening and my bones feel like they are rotting.  I am on a pain contract so part of me is afraid to go to the ER and I also am terrified of needles and rather avoid an IV to be honest. I hate being poked and prodded and I truly honestly really really felt it was serious. Something really bad is going on. Pain does not come on that intense without a significant problem. I needed help.

I went to quick care instead. I figured if it was bad enough, maybe something would show on an xray. I let them know I was NOT there for pain meds, I have my own. The doctor was truly concerned. I told her about my weight loss (well over 10% of my body weight), my swollen glands, my intense hip pain, my abdominal pain and the new pressure feeling inside of me. I was fevered. I told her how I had been apparently fevered almost all of 2018 per my medical records. My lack of appetite and bloating.

She immediately showed concern in her eyes and felt it serious enough to skip the xray and get me immediately to the ER for a CT scan and blood work. I was scared. I was absolutely certain today would be the day they would find what ails me.  Whatever new is going on is not my ME/CFS. It’s not my Fibro. This is different. I’m terrified I have cancer. I’ve been asking them to look but no one bothers. I finally have a hematology consult in over a week. I also have a pulmonary visit to establish care as I was recently diagnosed with emphysema and they found 4 nodules in my lungs. One is simply a granuloma but 3 are not. One for certain is suspicious and the locations are scary.

I had also found a lump in my breast. I felt it. It’s there. I’m not crazy. In fact I didn’t find it by looking for it, I simply saw it sticking out while looking in the mirror after my bath. My hubby felt it. My doctor felt it. She felt the location bizarre since it’s so close to the skin. She ordered an MRI of my breast and guess what? No mention of it. No mention of the prior lump that was seen on my MRI back in 2013 in that same breast either. I have issues with my right breast with intense itching near and on the nipple and have had that off and on for a while. The MRI showed a hyperintense focus on my right breast (meaning too small to classify) and I was told my test was normal. Carry on….

Anyway, I finally felt someone was taking me seriously and the doctor was sending me to the ER so I ran home, rescheduled some appointments and arrived at the ER. There were only 3 groups in there which wasn’t too bad, and one lady who arrived (still standing) after me. I checked in and told them quick care sent me that way that I was in excruciating pain. They got me a wheelchair, mine forgotten at home, and then checked me in and sent me to wait. And wait. The room cleared out, including the lady who came after me. My hubby and I looked at each other reaching the same conclusion. They think I’m drug seeking.

I was finally called back and the doctor said he read through all my information in my records and said I had a LOT going on. No shit. I absolutely do. He said he wanted to draw some labs and do a CT scan. I was ready for it. Did I mention I hate needles? I had secretly put emla cream on my arm before arriving. It helped! I didn’t feel the sting or slide of the needle and tube enter my arm. Thank you God.

Lots of labs were drawn and I waited. My pain increasing, my next normal dose about to be past due and no one has provided me pain relief. I asked. I never ask as I don’t ever want to be seen as drug seeking and I feel if they know up front I don’t need or want pain meds, they’ll take me seriously. But this time the pain was so intense it hurt to talk. I asked for them. At this point it’s over 2 hours since I had arrived and no pain meds entered my IV line.

A new doctor walked in. My bad, a new PA walked in. (they are the worst in my opinion. Give me an NP any day over a PA, though on occasion there are some great ones). I asked immediately for pain relief and he said well, lets get your history and I got mad. I’d already repeated my self so many times and they want me to do it again? Where is my pain relief. He yelled at me. He got butthurt when I simply raised, didn’t yell, my voice in frustration and told him I’d been waiting forever and I’m in serious pain.

He told me my labs looked great, I wasn’t in any danger and that they were only going to get an xray on me and send me home. He said I’d get my pain relief and I truly believed in that moment his wall was up, the door was shut, his mind stuck and I was not being taken care of, I was simply a drug seeker taking advantage of the system and getting med tests when not needed at this time. PA Jared O did not want to listen, did not want to HEAR what I had to say. He told me he was tired of people coming to the ER to get tests done faster than they would by going through their doctors. I told him I was in SEVERE pain and felt like my bones were being ripped apart, something was wrong, I needed help!

He said my blood was normal so there could NOT be anything seriously wrong with me. I was NOT dying and they are there to make sure there is not acute crises and life threatening problem and if not, go home and call your doctor.  I asked him a simple question. I asked if a patient had Ulcerative Colitis or Crohns disease, would it have shown signs in the blood? He said yes! I would have high inflammatory markers, I would have other high stuff giving clues in my blood so absolutely. I then asked if anything would have shown on CT scans and YES. He went into a discussion on stranding and some kind of something that would show on the CT scan once again giving clues as to the condition.

I said thank you. By the way, when I had moderate to severe colitis, my blood work was completely NORMAL. No inflammation, no nothing showing in my blood and guess what else? My CT scan was normal as well. I said my doctor had decided to humor me and do a scope since I was bleeding out my backside. My primary doctor said she seriously fell out of her chair when the results came in. I had ulcerative colitis with normal labs and testing. It was right there in my colon,  on the scope, I had it.

So then I told him my point in telling you this is that you assume we are all horses and that there are hardly ever zebras in the room but guess what, I am a zebra. I am one of those patients who do NOT present as typical and do not react to meds as normal, I am DIFFERENT. I am a ZEBRA.

And I knew, watching his face that the walls were up, the doors were closed, even when his eyes lit up at the use of my word, zebra, but he had shut down, made up his mind and refused to be persuaded or budged from it. He is right and I am wrong and will not admit otherwise.

I was extremely angry. A waste of my time, a hole in my arm, body hurting and I will once again be left with no answers. I got my pain meds. It did NOT take away the pain from my side and hip. It did take the edge off. Xray done, by the way only two were ordered and not of the part where the pain was actually located and not of my abdomen, nothing there, no inquiry.

PA Jarod O came back and he brought his side kick. A female with a flat straight irritated face, annoyed that she must accompany him, wasting her time to deal with little old me who is just wasting their own time there. She told me my xray revealed a hip effusion. I had fluid on my hip. “Probably from arthritis.” I had been on bed rest for a while and I had no injury but I did have a fever. It could be an infection, there could be more going on but they simply would not look. No mention of my abdominal pain.

I looked over at PA Jarod O and simply said, “By the way, I did not CHOSE to come here. I did NOT come here to waste time of get testing simply early, I was ORDERED to come here by the doctor at quick care. So do not ASSUME that I was simply there to waste his time.” They left.

He came back with a different tone but still would not budge from his stance and was sending me home. I told him he needed to remember what I am saying to him for his future patients. We are not all horses and if I can help one person to get real care, it would almost be worth it. Almost. My kids need me. We argued for about five minutes, though politely, him looking to my husband when he could not get me to relent and he would not relent as well.  We were discharged and the pain was just as intense as when I arrived.

I felt so at a loss. I called the emergency line for my pain management doctor and spoke to someone new. He was appalled by what took place but really, there was nothing he could do other than grant me permission to take an extra pain pill but nothing to figure out the dilemma I was in. I thanked him for letting me vent. I took an extra pill, a hot bath, and put essential oils on my hip and stomach and butt and laid down. The pain finally relented.

I awoke this morning, pain still in my side and abdomen, bearable in my hip though worse than my normal, and I saw blood when I went to the bathroom. No worries, that’s all in my head too. He never did address the abdominal pain I was there complaining about. Maybe a burst cyst? Who knows, he never looked, he never bothered to LISTEN to me. Guess it’s good it didn’t burst and cause deathly bleeding though it would have been worth it if I was saved in the end, just to rub it in his condescending he’s right I’m wrong god complex face. Yes, it would have been worth seeing that. Though in the end, he’d probably never admit that he was wrong…..

 

Update:  Still searching for answers. Pain had receded just to flare right back up on me.  Hip MRI shows some bone inflammation in the femoral neck so now I’m waiting on orthopedic to call me back. Still have the labral tears but one now has a cyst on it. Still have the bone marrow edema near my SI joints as well.  Yup, painful stuff but nope, nothing to see and no pain med help either…  I’d never increased my pain meds in going on two years (?) and have not flat out asked for it until today. And today, I was shown why I never asked. I was given a steroid script. A drug on my do not take list. Pain be damned…

 

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