doctors

The Good Doctors

I had a doctor’s appointment today. I love seeing my Internal Medicine doctor because she truly cares, and wants to help. Not that the others don’t, but she really seems to care, She has made it her mission to get to know me and understand what I am going through. As most people with any type of illness can tell you, finding a doctor like this is very rare. I have been lucky to have three of these doctors in my lifetime. One of them was pre-diagnosis, back in the early to mid-2000s. She actually moved from my hometown of The Dalles to a town about two hours away. I remained her patient and drove to see her each appointment. Luckily, she moved back to my hometown and I continued to see her until I moved away. Then I had a slew of doctors that just were prescription happy, and misdiagnosed most of my illnesses. At my worst, I didn’t have insurance, and was at the end of my rope with all the symptoms from an undiagnosed Wegener’s Granulomatosis. I just happened to pick a doctor that my new insurance covered, and was near my home. She was the doctor that referred me to the doctor that referred me to the doctor that diagnosed me. She helped manage my medicines from a local standpoint, since I had to go six hours to my specialist. She is a doctor I miss. However, my current doctor is one smart lady. She is the doctor that facilitates my medicines, my referrals, and really tries to help. I don’t feel like I’m just a patient. It’s nice. It also allows me to speak my mind and be at ease, which is so helpful when you face anxiety like I do.

 

Right now, I am dealing with a lot of pain and fatigue. We are trying to figure ways to manage it, without just adding more medications blindly. This is going to be a process, and require several referrals. I feel a bit overwhelmed because it feels like I am back at square one with Fibromyalgia. However, with Wegener’s being in a remission of sorts, that is a huge worry off of my plate. I am anxious to get in with the specialist. As usual, they didn’t have appointments right away. So now I need to find a way to cope with things how they are until I can get in to see them. My initial feeling is to just do what should be natural…eat well, get enough sleep, and exercise. Simple enough. However, when you are in so much pain and extremely fatigued all of that is nearly impossible. I think I cause myself extra grief by stressing myself out about I “should be” doing this and that. It’s very aggravating.

 

I know this blog didn’t help many, but it helped me to just write. J

Achoo!

It’s rare to find a good team of doctors that work together. I’ve finally found a good team at Oregon Health & Science University. It took several years , but I finally have doctors that understand Wegeners. 

Just one of the many downsides to having a chronic illness is when you get a cold or the flu. It’s like a double whammy. The doctors you see for your chronic illness aren’t likely going to fit you in  just because of a sore throat and back pain. This always stresses me out. I am super lucky that all my doctors are at OHSU. they all have access to each others chart notes. Usually, if I’m sick and they schedule me with an on call doctor, but I just decline. What’s the point? They do odd tests and give meds that conflict with my other meds. I’m always told I have allergies, but it’s actually a Wegener’s flare. I usually suggest my treatment and they are happy to ablidge. 

The past week or do, we’ve been passing a nasty cold around. Travis had it, then Kenna, and then I got it. I also had pain from a UTI, the pain became too much, so I opted to get in with an on call doctor. 

He ran several tests. At first he’d said all was fine. A half hour later he called and said that he thought we should do antibiotics just on case.  Now, nearly a week later the results are back, and I’m so glad he have me those antibiotics because I have a kidney infection. This isn’t good with having Wegener’s. I was able to get a shot and start even more antibiotics man do hope it’s under control. On Monday, I’ll go and follow up with my doctor. I believe they are planning an ultrasound to make sure my kidneys are okay. 

My hearing tests came back good,so now we wait for the MRI and appointment with a neurologist. I’ve been saying for months that something is just not right with my brain. I feel very off. Luckily those darn accents have disappeared. Lol

I’m lucky to have the doctors at OHSU. Before we found them, my care was subpar. The doctors weren’t connected and things that needed to be done, weren’t. Don’t get me wrong. I had a few amazing doctors, they just didn’t communicate with each other. 

I feel strange, don’t ya know? 

So I feel like I should start this post like this: Patients log 6156880, today things are worse than they’ve been in a while. 

All joking aside, something is wrong. Neurologically I’m messed up. I don’t know of it has anything to so with Wegener’s Granulomatosis or not? I’m dizzier than ever. I slur words. He’ll, I’ve even picked up a Northern accent. Not even being silly. I’ll be talking and all of a sudden someone from Wisconsin comes out of my mouth. It’s happened slowly over the past year. We always laugh, but now it’s really scaring me.  

As I write this, my arms and hands are twitching. As if I have gotten a chill, but it’s constant. I don’t know why? I’ve asked the doctors and they suspect WG, but unless it’s attacking my brain, I haven’t heard of it presenting that way. Most of my symptoms resembles MS, but the doctors say that isn’t it. 

In any case, I’m scared. I feel crazy and alone. Even though I know I’m not alone, I’m the only one experiencing these things my body is doing and without answers.  It’s very frustrating.