I am not an easy patient. Far from it. I insist on researching each medication doctors want to put me on, I refuse surgery if I don’t see it as needed, and I refuse to let up or give up. I am pretty much a nightmare to hospitalize, and even worse in ERs if I’m not treated right. I question each diagnosis, each lab report, and each cat scan finding. Hospital nurses usually love me, mostly because I knock the pompous doctors down a notch… and involve them in the most horrendous jokes you can even fathom. Nurses in offices? Usually don’t like me too much, as I don’t take orders well if I don’t agree with them.
I’ve been “chronically ill” for 7 years now, it’ll be 8 in April. 6 of those years I’ve been diagnosed as having Crohns Disease. I know my disease fairly well, I know my body even better. I can tell you if the pain I’m having is inflammation, an abscess, or an obstruction. I can tell you if an internal fistula is open, or if it’s healing. I can tell you pretty much anything about my disease, I can also tell you almost everything about the medications I’m on.
However, over the past couple of years, I’ve become… mentally beaten down. Wary. Tired? I’m not sure. All of a sudden, instead of questioning everything, I started rolling over. Instead of chewing out surgeons, I cried and sent them out of the room. Medication I didn’t agree with? I took it for months before I stood my ground and threw the pills out. I’m letting others control a major portion of my life with out forcing them to listen to what I have to say about it. Just the other day, I rolled over when a nurse pulled an ego-trip and lectured me. I rolled over and took it… for a while.
This most recent Crohns flare, is just that. I have a new pocket of inflammation that has been acting up on and off since May. I was hospitalized for it then with a partial obstruction and pain… the following catscan found it. Christmas Eve, the pain got really bad. Christmas Day I was living in the bathroom… Christmas night I stayed up in fetal position because the pain kept me from sleeping.
I called my nurse, and got one I normally don’t deal with. She was very nice and suggested I go to the ER for some pain relief. I agreed as I didn’t have any pain medication at home. I hopped into the ER, the ER doctor (one I’ve seen several times) confirmed that it wasn’t an obstruction and gave me a couple of doses of pain killers and fluids. Wrote me a script and let me go home. The next business day I called my nurse back, I needed to make an appointment and ask for something for nausea and pain.
My normal nurse was back. She went through my medications and started lecturing me about going off of one of them. I informed her if she answered messages, she would have had a say… but she kept going. “Well maybe if you stayed on xyz, you wouldn’t be sick.” I shut my mouth even though I just wanted to yell “I was still sick on xyz, except for then I was losing my hair, dealing with fatigue and insomnia (more than usual) and lack of appetite!”. I kept my mouth shut.
She kept going on and on. I cut her off to ask for something for pain. She refused to give me anything (apparently about half of all GI offices don’t write narcotic scripts), not even drugs previously prescribed by her office. I asked her who I should call for pain medication, and she told me to go to the ER. “Umm, I went on Friday. I can’t go in every day, I have to work too you know.” She didn’t know. She had no idea. She didn’t even look in my chart. I asked her again who to call, and she wouldn’t refer to me anyone. “If the pain is that bad, go back to the ER.” I got off the phone in tears. All I knew is that I had a bad Crohns flare, with little medicine left and no relief in site.
I made some calls, and someone called my doctor’s fill in for me. He knew right away that I had already been in the ER, and after small discussion wrote me 3 prescriptions…. and instructions on what to do if the pain got worse, obstruction, blah blah blah. So to sum that up, a doctor I’ve never seen… who looked at my chart once, trusted me and respected me more than a nurse I’ve been working with for 6 years.
On Monday, my doctor comes back, and I am to call him to discuss my options. However, I know the nurse has already filled my chart with crap about me quitting one medication. I was dreading talking to him, I had cowed and taken two different medications this year that I didn’t agree with. I didn’t want to be bullied into it again.
It finally dawned on me. I was letting doctors bully me. I had let a surgeon make me cry. I had let a nurse make me cry. I had taken the wonderful care from the wonderful ER doctor’s and nurses, only to be made to feel uninformed and dangerous by one nurse who hadn’t even looked at my chart. I had agreed to take medications I had notes against in all charts across all networks. I had stopped standing up for myself and my body.
So that’s where my New Year’s Resolution comes from. I am going to stand up to my doctors, I am going to tell that nurse off. I am NOT going to be talked down to because I don’t like taking 2 medications out of god knows how many. I am NOT going to be bullied because I don’t agree with a certain course of action. I am in charge of my body and the decisions that swirl around it. This disease is part of MY life, for the REST OF MY LIFE. I have to own it, be informed, and make informed decisions.
Having a Chronic Illness is not easy, it’s actually quite terrifying at times. It’s easy to get down when you’re feeling sick, it’s easy to feel defeated. It’s heartbreaking to look at the rest of your time on this earth thinking “so this is how it’s going to be?” We as patients, we as people need to take control and steer our own lives, which includes or illnesses. If your doctor doesn’t agree, there’s always another doctor, with another opinion.
In 2015, I will not be bullied.