As you might be able to tell, I’ve been doing a lot of blog maintenance this month. I’d kind of gotten out of the habit of including my readers in my story. So I’m determined to bring back advice articles, reviews and some solid giveaways!!! I’ve got so much set up for the next few weeks. It’s basically a blog party. YOU GET A PRIZE AND YOU GET A PRIZE. EVERY BODY GETS A PRIZE!
But in all of that excitement I also forgot to include you in what’s actually happening in my chronic illness story. Oops. So here we go.
My concierge doctor made some phone calls (at last) to the concierge base to see if they could get me in with a motility specialist at John Hopkins. They said they could. A few days later I had an appointment with someone—but not the person my doctor had told me he thought I should see. And frankly, I wasn’t flying out to another state to see someone who wasn’t the expert. When I asked John Hopkins if they could reschedule me with the right person they said sure! They would probably just need a few months to see if the doctor would want to take my case.
This was kind of the big, fat, final straw for me with my current doctor. It all just seemed like too little, too late.
A friend of mine had told me to go see her concierge doctor. R.J went with me to the appointment because my stomach was in knots about having to face the idea of starting this whole treatment plan over with a new team. Fortunately the doctor was extremely kind, understanding, and genuine. He told me that his wife also suffered from chronic migraines—so much so that she was taking 10mg of dillauded and it was barely touching it. Wow. He talked about the doctors he knew, the people he would want to suggest for me.
But then he said he was horribly sorry, but he was going to be taking his wife in and out of the country over the next few months to try to get her help in Israel. I completely deflated. But then he told me he would speak with the other two doctors in his practice and surely one of them could take me on until he came back. He also gave me the name of a pain management doctor who he told me to call right away.
The following week I got in to see the pain management doctor. Just like the new concierge he was extremely understanding, genuine and knowledgable. I have to admit, I was sitting in his waiting room having a full-fledged panic attack. I’d been to another pain management doctor the week before and it hadn’t gone well. And by that I mean he didn’t understand dysautonomia, and wanted me to just stop the painkillers and figure out a way to not eat for two months. It wasn’t exactly a great treatment plan.
This doctor was saying that he could help me slowly ween off the Depakote and Desipramine while managing my pain with slow-releasing painkillers, and then we could slowly get off the painkillers and then I’d actually be clear to get pregnant. I was so relieved to find a doctor who had a realistic PLAN, not just to get me to my goal—but to make me comfortable while doing so—I just wanted to cry.
I had some trouble with my insurance company and the pharmacy trying to fill my new medications, but I’d already been in pain for so long, the extra week of waiting for paperwork didn’t kill me.
I went to see the other doctor in his practice, but he said he didn’t have enough time for me. There’s one more in his practice who I’m hoping will be a fit. If not, I don’t know what I’ll do because after all my thinking and meditating on the situation with my current concierge doctor…I just don’t see how I could trust him in an emergency, or a non-emergency really. He flat out told me he didn’t know what to do with me. I don’t know any other way to take that but to get lost.
My pain has been somewhat more managed anyways. I’m getting used to being on painkillers and the slow-releasing ones certainly are better than having to stop and go and stop and go with naps all day. I’m fully functional—able to work, see my friends, go out to dinner, the movies, we’re even starting to plan our trip to universal. It may not be the perfect situation, but I’m doing the best I can with the tools I’ve got.
Oh—one more thing. My surgeon took a look at my scar the other day and I told him it’s been getting redder and spreading. He thinks I probably have an infection under the scar tissue and wanted to put me on antibiotics. I don’t know if he’s right or not and he was kind of cavalier about it. I’m going to make an appointment on Monday with my infectious disease team and see what they think before subjecting myself to another round of antibiotics. (Because I need more of those like I need a hole in my head.)