Yet Another Thing…

Hello blog world. How goes your battle? We truly are warriors aren’t we?! I admire everyone waging war with autoimmune diseases. They’re vicious, relentless, ambushing, painful, annoying diseases that too few understand including the medical world.

Anyone else in on hating the autoimmune diseases club?!

I have a new development as of last week which is now forcing me to see yet another specialist. So presently, I’m booked in or being booked in with 4 different specialists. Yes that sucks but, what sucks worse is three of them are a 10 hour round trip drive away. You heard that right. That’s not only impossible for me, but since Mr. CrankyPants has to take off work every time to drive me, it’s impossible for him too.

I’m presently trying to get out of one appointment that I believe is completely unnecessary. If I thought for any reason at all that it was necessary I wouldn’t be trying to get out of it. Right now as far as I know, I’ve managed to talk them into a teleconference appointment in my own city instead since they’re not letting me away with cancelling. That’s the Nephrologist.

I’m in process of trying to get the other two out of town appointments covered in one day since they’re both in the same building. If I can do that, it means only one trip rather then three.

I know you’re still wondering what the latest development is. I guess I shouldn’t keep you waiting any longer should I?! Well just for a min.

The appointment that is in town already hasn’t been made yet but that’s with the GI regarding my gut. I’ve heard she’s amazing and the kind of Dr. everyone wishes they had so I asked to see her and I’m grateful for the referral to her. I don’t know how long the wait will be.

The other two are the Rheumy and drum roll please…I’m now being booked to see a neurologist.

I have developed a tremor. The Rheumy is concerned and wants me to see the neuro.

I’m grateful to be referred to the neuro as I have other neuro stuff going on aside from this new tremor but, my heart sank when I found out that yet again it was going to be out of town. Geeze we need specialists up here.

If I was doing things the Dr.’s way, I would be making three 10 hour round trip drives in two months to see these docs. Who can afford that financially or health wise?! It’s ridiculous. I hate our medical system and it’s making me a CrankyPants.

Do they not get that we are sick people?! I’m so weary.

I don’t know if I mentioned prior that I’m looking into reporting a Dr. here for a serious situation? The College of Physicians think I need to. If I have already, just an update. I haven’t decided yet whether I want put myself through the stress of it only for the College of Physicians to do very little to nothing anyway. Sad that Dr.’s are so protected but patients aren’t.

Anyway, I’m worried about this new tremor thing too. I hope that I can get some answers. I hope even more that it’s nothing to worry about. While I’m there, I’ll take the opportunity to tell the Dr. about my really bad memory and my struggle to get words out and form sentences that started when I was on methotrexate. I’d really like to get an MRI and maybe a brain scan so I know if anything worrisome is going on.

Or if I have a brain at all. 😉

One more thing. I grabbed the opportunity to ask the Rheumie while I had her on the phone, for an ultrasound on my foot since it’s become so painful I can’t walk on it. Rather my big toe joints. She complied and I’m happy about that because I can’t get my GP to do anything. The bummer is, it’s a 6 month wait for an ultrasound. Grrr…I’ll get myself on the cancellation list I guess.

How are you all doing in your battles? I’d love to hear from you.

Hot Days & Rain Coming,

CrankyPants

P.S. Sorry I’m so Cranky today. I’m overwhelmed and just wish all this would go away.

A Visit to my Internist

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,

CrankyPants