Even I Didn’t Believe Me

During the second week of March I started having this pinching sort of pain in my lower right pelvic area. Not unlike the pain I get when I ovulate but a smidge more pinchy than normal and persisting well past any kind of reasonable egg-laying time table (I have the utmost respect for chickens). The pain increased every day until I was a crying mess in my bed on the following Wednesday afternoon.

Contemplating a trip to the emergency room versus riding it out at home (The Hubs and I agreed that the Emergency Room probably wouldn’t yield much, it rarely does) but I was in so much pain I was willing to take the risk. So we packed up and drove all the way out to the hospital with all of my records (40 minutes one way) and The Hubs promised that he would make sure they helped me as I cried in fear they wouldn’t.

The wait was long but when it was finally my turn the staff was kind and efficient and quickly discovered I had a complex cyst attached to my remaining ovary. There was good blood flow to the area and no fluid in my pelvis so there wasn’t really an emergency per say, but the pain increase I had been experiencing so far outside of my normal had a culprit. I was so relieved to hear that there was something wrong with me I actually smiled and laughed out loud. I looked at The Hubs and said “I knew it. I knew it.

Okay, so this is my first hang up with this whole thing; I was so relieved to hear that there was something wrong with me I smiled and laughed out loud. Does this sound a bit messed up to anyone else? Or is it just me? I have become so jaded, so programed to tolerate pain on a daily basis- sometimes at levels that should drive a person to seek urgent medical care- that I can no longer tell when I am experiencing an acute issue or more of the same.

Actually, let’s back up a little bit to the part where I cried the whole car ride out afraid no one would help me when we got there. I have been sent right back out the door of the emergency room with zero change in my status too many times to trust that this time would be any different. Not only have I been jaded by my own pain, I’ve been pat on the head and sent home to “ride it out”  so many times that, not only have I lost trust in my own ability to tell what’s an emergency and what isn’t, I no longer trust the health care providers to do it for me. As a chronic pain patient it’s all more of the same pain, even when it’s not.

It’s disheartening to say the least.

With the photographic evidence of my cyst as my ticket from chronic to acute patient I was treated for the pain I was in by the ER Doctor (Dr. A) and given instructions to contact my primary in the morning for further treatment. After a ridiculous round of “That’s not my Department” with my primary’s office and my pain clinic the following morning, I was given a small amount of pain medication to get me through until the cyst either shrunk back down, popped, or was surgically removed.

That following Sunday evening I started to feel a bit off; hot, weak, ears ringing and stomach twisting. I told myself it was anxiety, that I ate spicy chili earlier that day and it was just talking back. This continued into Monday where I progressively felt weaker and weaker, sicker and sicker and I told myself it was lack of a good night’s sleep, that I had a migraine coming on. I was up all night with this odd sensation of “just not right” until about 1:00 am when I finally dozed off for a few hours. At 3:00 am I felt an odd twinge in my side, and my shoulder felt stiff so I cranked up my heating pad and did my best to chase down some sleep. This continued for two hours while I kept telling myself it wasn’t as bad as I thought it was, that my anxiety was making me feel worse than I did.

At 5:00 am on Tuesday morning all hell broke loose in my body. My whole right side from hip to shoulder was on fire, my neck and jaw ached as though gas was pushing up through my collar bone. I couldn’t catch my breath, I was sweating and freezing and shaking. My tongue and throat felt thick and fat and ached in a way I only recognized from post-surgical experiences and I was in so. much. pain. I told myself “It’s just anxiety playing tricks on you. Try to breathe, meditate, pray.”

I woke The Hubs up and told him something wasn’t right, I started to cry telling him I was afraid, that I was really freaking out and he wrapped me up tight and we tried to sleep it off together. It just wouldn’t go away. I called the nurse line and she told me it was probably a sore joint from an activity the day before (what?) and to take some Tylenol and go to bed. This further perpetuated my distrust of my symptoms; if she wasn’t concerned I shouldn’t be either.

At 7:00 am I contacted my primary who had an appointment open for me. The whole way out there the same dialogue ran through my mind “what if this is nothing? What if they can’t help me? Why am I even doing this? This is going to be a waste of time.”  But by 11:00 am I was on my way to the U of M for a CT scan; either the cyst had ruptured or my appendix was bursting.

The CT scan confirmed my appendix was perfect but that the cyst had indeed burst wreaking havoc on my insides and causing every symptom I had tried to talk myself out of believing was real. I was given medication to ease the pain that would continue for a few more days at home and instructions to take it easy as my body cleaned up the mess the cyst had made inside it. It has been three full days since this went down and I am still healing.

This is where things gets really sticky for me you guys.

Something really was wrong. Something so wrong that emergency surgery was being considered. All of that shaking, the ears ringing, the pain, it was all real. All of it. The short but very true statement “I’m scared” whispered to The Hubs in the dark of the morning while trying to make sense of what was happening-all justified in one CT Scan.

And I had doubted myself so deeply that I almost didn’t go in. I had chastised myself all night telling myself to stop being so sensitive, that things like this don’t really happen in real life. Not to me. That this was being dramatized because I was tired and if I could just get to the daylight hours I would see it was nothing. I fought back against the voice in my head that kept telling me “This isn’t normal. You need to see a doctor.”

This is the result of living in pain every day of your life while the outside world tells you that if they can’t see it, it must not be that bad. This is the culmination of every single doctor telling me “That’s not a real condition.” Or “This really doesn’t cause the kind of pain you’re describing.” This is on the shoulders of the nurse on the advice line who told me there was no way my pain was related to my ER visit just five days prior. That I should just take some Tylenol and get an ice pack.

This is what happens when your pain medicine specialist practically rolls her eyes when you explain that you went to the emergency room two days prior for what turned out to be a cyst on your ovary.

This complete and utter disrespect for my own body’s cry for help is the fault of the doctors who tell me “Yes, those are symptoms of your condition but they are really rare.” And “The easiest answer is usually the right answer.” This is on all of the people I spend my time and money consulting with to help me.

So often instead of our providers offering compassion and empathy for our conditions we are met with disbelief and accusations of drug seeking. We get chided for using tools to learn more about our conditions (read: Google, WebMD, etc.) and laughed at for suggesting our own conclusions.

We hear things like “I have plenty of patients with this condition and none of them have pain.” Or “Everyone has that in their body, it’s nothing.” Our providers have forgotten that we aren’t paychecks, we are people. We aren’t patient #25 on a Tuesday morning, we are mothers and wives, friends and sisters. We have whole lives just sitting on warming trays waiting for us to return and we get 15 minutes of face time with a provider who rarely even remembers what we discussed the last time we came through their doors.

It’s completely unacceptable when you consider the very real truth that without sick patients, doctors would not even be needed. What’s more than that, deeper than any kind of catty “I pay your salary” jargon we could throw around is that we want your help. We want to feel better. We want to be anywhere but sitting in this office or emergency room cot discussing, yet again, the details of our medical failures. So when we abandon our homes and make the 40 minute one-way trek to the emergency room at 8-o-clock at night we are truly desperate for some relief.

If I have learned anything from this experience it’s that I never want to hear of another patient doubting herself the way I did this week. I never want another patient to lay in bed in the middle of the night telling herself “It’s not really that bad.” Ever again.

We have to call out the providers who are callous, dismissive and disbelieving. The providers who insist they can draw blood from the arm you’ve asked them not to use. Write the reviews, call your patient representatives, get into the forums and start talking about it all. Stand up to the doctor who makes you feel small, the ones who tell you it’s all in your head. Trust your body and what you know to be true about yourself. Doctors may have the book smarts, but we are always going to be the experts on ourselves and what it’s really like to live in this body and that deserves the utmost respect.

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