Today I had an appointment with my Internist. He was actually the first one to believe something was very wrong with my health after a three year battle with Dr.’s which included my GP, two Rheumatologists, and a pain clinic. He diagnosed me with lupus. I felt such a sense of relief when I finally had an answer. Not because I wanted to battle a life threatening chronic illness for the rest of my life, but because someone finally believed me and gave me answers. I almost cried. He even looked at me and said, “You’re really sick.” I was like, “Yes and thank you for seeing that.”
Now since then there have been quite a few trips to see him, and he’s changed his mind with my diagnoses. He started doubting himself. Can’t say I wasn’t bummed. That led to me having to see yet another Rheumatoligist. CRAP! That means 10 hours of driving. He tried to send me to the one Rheumie I told him I would never go and see again. That Rheumie was abusive and my Hubby was in the room with me even. So I asked to see someone else and he sent me to someone else. She is presently my Rheumatologist. I can’t stand her. She’s fresh out of school, arrogant as hell, a right wing fighter who always has to be right. Not only that she goes by the text book. She told me that my disease didn’t fit the box. Does the disease know it’s supposed to fit in a box?!
If it’s not in her text book then it’s not lupus..However she says it’s autoimmune disease so let’s just call it MCTD-NYD (Not Yet Determined). What the hell?! I could tell her what I have but she won’t listen. I know in my gut what’s wrong. But she won’t listen.
Having said that, I have a ton of lupus symptoms and Rheumatoid disease symptoms as well. God forbid she listen to someone living this disease rather then reading about it and thinking she knows everything. Sigh. Not to mention she blames me because my body isn’t tolerating the medication. Yeah that’s so much fun for me.
Now I’m struggling with the immune suppressants making me sick and causing complications. My Rheumie who refused to see me the last time I made the 10 hour trip to see the Nephrologist she sent me to, in the same building as she is in,now wants me to make this 10 hour trip again to see her in November, and we’re talking winter driving. The roads are wicked because they’re not taken care of up here.She says SHE needs to re-access my joints to apply for the med that we both know could really help me. I told her that I can’t make that trip again. Not only does my Husband have to take off work every time to drive me, but the trip does me in.
I asked my Internist today who’s in my area, if he’d be willing to work with my Rheumie, and access my joints. He was happy to do that thankfully. He could see how much worse they are getting.
What worries me is that my arrogant Rheumie won’t be willing to cooperate on this. She’s that cold and heartless. That also doesn’t make me want to go back and see her.
So where it stands now is, my Internist is going to send her his assessment of my joints, she should have that in about a week and then I’m to *SHUDDER* Call her and see from there if she’ll apply for the medication I need ,to hopefully help get this disease under control. What sucks is that SHE’S the only one who can apply for it, and she let me know that in the most arrogant of ways so, if she’s not willing to cooperate I’m screwed. I’m very worried that she won’t cooperate.
I’m out of options. In the meantime I’m remaining on the meds that are making me sick. Good times! NOT.
While I’ve experienced a few amazing Dr.’s many of them have been nightmares. I just don’t get what’s happened to our Canadian healthcare system. When did it become okay to treat patients so badly that they leave crying?! Where’s accountability in the medical world? Why won’t Dr.’s listen to their patients anymore?
We know our bodies better than they ever will, and we know when there’s something wrong, even if it doesn’t show up on the damn blood work. Some of my blood tests showed up positive such as my ANA test and they still wouldn’t believe me for three years even with all the joint pain, infections, fevers, weird things showing up out of nowhere..
If there are any medical people reading this, for the love of God show some compassion, listen to your patients, and believe them when they’re telling you something is very wrong. We want to feel like our Dr.’s have our backs and want to fight for us and alongside us.
I am grateful that my Internist and his PA are those kind of Dr.’s but sadly that’s rare and it shouldn’t be ever anywhere.
Thank you to all the amazing ones that are out there and that I have experienced. I can’t tell you how much of a difference you make in the lives of your patients. I wish they were all like you.
Cake & Candies,