It’s amazing how the attitudes of doctors change when you get back test results that show an abnormality. After two years of wishy-washy test results, saying something might me wrong but nobody could figure out what, I think most doctors had started to think I was making everything up. Honestly, after being treated that way for the better part of a year I was starting to question it myself. Maybe I had turned into a hypochondriac who was just depressed and looking for a way out. But finally, something came back and abnormal. To most people an abnormal test result is terrifying and certainly not something to hope for. For those of us managing a chronic and difficult to diagnose disease it can be a lifesaver.
Walking into the doctor’s office after my result was a bit interesting. The doctor who had from the beginning shown that he questioned my symptoms was like a completely different person. Now I deserved actual treatment. Now I deserved a referral to a specialist in order to really nail the diagnosis down. A medication that I had been trying to get for many months was offered without question. Keep in mind, this medication is not a barbiturate, not an opioid, produces no “high” and is not at all addictive. It just decreased nerve pain. And it did. For the first time in about two years I had a few hours of relief.
It amazes me and infuriates me that it took this test to convince doctors that I am unwell, that something is indeed wrong. Interestingly we are now deciding between the two diagnoses that I have said were the possible ones all along. But now the doctors believe me and agree.
It’s sad that we live in a world where people in pain are made to feel like they are making it up when a single blood panel comes back normal. I had a pain specialist point blank tell me that since I didn’t have a bulging disk in my neck I couldn’t be in pain. Said that to my face as I sat there crying and hunched over. I was told that I was just overly stressed and excitable. All too often women are told it’s all in their heads.
It’s taken two years to finally be taken seriously by doctors. I’m lucky, most people end up on the doctor-merry-go-round for at least 5 years before getting somewhere.
Here’s to being a loud, obnoxiously well versed in medical research, stubborn, squeaky wheel, non-med compliant patient.
I may be annoying to some doctors, but I finally got a possible diagnosis. It shouldn’t have taken a painful, expensive and exhausting test to be taken seriously.
The only reason I did the procedure was because my doctors wouldn’t do anything until I did it. Sure they would see me —so that they can say they are “continuing care.” But no treatment. No actual help. So what options do I have?
******A pre-emptive note- I wrote the following in pieces while recovering from a procedure. This is in all ways a rant. If you don’t like rants, please don’t read the rest! ******
I’ve had several people lately tell me how “proud they are of me” for agreeing to do a medical procedure that I DID NOT WANT TO DO. I’ve said no to it for almost 6 months. When I finally agreed to do it and told a few people, some of them were proud. These are people who have been somewhat knowledgeable of what I’ve been going through. Not all of it. I think only one person other than me knows the full extent of it all. After the first person said they were proud, I was a little confused, but figured maybe they were proud of me doing something I was afraid of? Maybe?
After the second I wasn’t so sure. At this point, lying on the couch for the 4th day after the procedure, dealing with the massive pain I was afraid of, I’m even less sure as to why someone would be “proud” of this. The only reason I did the procedure was because my doctors wouldn’t do anything until I did it. Sure they would see me —so that they can say they are “continuing care.” But no treatment. No actual help. So what options do I have?
I had a shower today. Let me tell you, that was a frickin feat. It took all day of resting up and lying flat to even attempt it, and only because I couldn’t stand the idea of laying in my own filth another day and dealing my greasy, itchy hair any longer. Also I figure I may end up in the ER (again) tomorrow and didn’t want to overwhelm the nurses with it. I decided a 5 minute shower was worth the agonizing pain in my head that feels like someone is shoving hot pokers through my eyes. Getting up to go to the bathroom is something that takes preparation. No just sitting up and walking for me! Nope. Got to oh so slowly, inch my way into an upright posture. Then wait for the worst of the blades to ease so that I can as quickly as possible stumble to the toilet and quickly lay back down. Of course laying down has it’s problems. Ever lie down (flat mind you, not reclined) for four straight days? Backs do not like this. Neither do necks. And since mine is already in pain most of the time it’s now just another level of pain. But what the hell….. what’s more pain to someone who basically lives in pain the majority of their lives?
I fear that this is the thinking of my doctors. So there’s a 40% chance that the procedure could result in up to 9 months of debilitating headaches? There’s still a 60% chance that it won’t! And they might get a possible answer! I mean, 30% of people with the diseases they are checking for have a negative test result. But what if?!?! It’s nothing to them anyways. They don’t really care if I have to miss another week of work. Just deal with it, they tell me. Because they are the doctors. They know all and can do no wrong! (Cue the sad superhero music.)
So here I am. In the 40% with debilitating pain. I hope the doctors are comfortable with themselves. I hope they have had a wonderful weekend. I hope they are secure in their insistence that I do that procedure. I hope that they are happy. I hope they rot in their self-righteous bullshit. Because I don’t know what I’m going to do at this point. Eventually this will go away. But what about until then? What exactly am I supposed to do? Deal with it, apparently.