Wednesday, April 17, 2013

Musical Doctors Muscial Doctor day went far better than I dared hope! Praise God. It was a loooong day, but much was accomplished, so I'm thankful.

First stop was JP Dr. I had a bit of "good news/bad news... I was concerned that I was still flaring because I'm having a lot of joint stiffness. The good news is that JP Dr was very encouraged to see that my joints don't appear especially swollen or inflamed at this time - my arthritis is NOT flaring right now! The bad news is that JP Dr told me that the joint stiffness is probably just the way things are going to be from now on. But it doesn't necessarily indicate a flare, so that's good! Switching the hydrocortisone with prednisolone (to decrease inflammation) and hiking up the dose significantly has worked! I'll stay at the increased dose for another week (until I get another Cimzia shot in my system), then begin an excruciatingly slow steroid taper that will last, at the very least, 14 weeks, but could take more than twice as long. Then I will arrive back at my "Maintenance Dose" of steroid for my Adrenal Insufficiency. She got me set up with some paperwork stuff to make navigating life a little easier and some day when I'm feeling less offended by being considered handicapped, maybe I'll blog about it. ;)

Next, I went to Dr. Tourette's. It's been a total nightmare trying to get ahold of ANYONE in their office, and the phone tag game yielded frightening results. I truly believe that they want to help me and are willing to do what it takes (including working me into the schedule of a doctor who's booked through DECEMBER) to help me... they just have a really terrible system in place (or maybe, they DON'T have a system in place) to handle phone calls. I realized after my appointment that I left without requesting a prescription for a med that he increased... and I'm already dreading having to call him to ask for it. Maybe I'll just ask my wonderful PCP to prescribe it (who, by the way, called me last night to make sure I was okay and to see if I needed anything. She's the best).

Anyways, I reported on my rheumatology appointment, and Dr. Tourette said that he and JP Dr had a very nice conversation about me and how to best manage my steroid requirements in light of my very complicated situation (adrenal insufficiency with dysautonomia with arthritis requiring steroids with functional short gut syndrome, etc). I am so thrilled that they are working together. I told him that I would be back to "replacement" doses of steroids somewhere between 14 and 28 weeks... and he told me, "Don't even go there. Don't feel like you have to stick to some timetable. Just take it one day at a time, and listen to your body - DON'T force your it to do something it's not ready to do. I'm very patient, and we'll get there some day on your body's timetable." What wonderful words to hear from my doctor! I like him.

We are increasing the florinef (med that helps with salt and water retention) even more, although I technically shouldn't need to take this med at all. My labs, vitals and symptoms all indicate that my body DOES needs it, whether because of my dysautonomia (POTS) or adrenal insufficiency. He said that my situation is very complicated and it's impossible at the moment to sort out WHY I have the symptoms I experience. The best thing to do is listen to my body and treat the symptoms, even if we can't explain why my body acts the way it does! What a novel idea! ;) So thankful that God led me to Dr. Tourette, as he really seems like the perfect Endo doc for me. Now if only we could get his office to pick up the phone occasionally, I'd be set! ;)

Next, I went to Dr. FancyPants' infusion clinic, which is literally down the road from my house... can't begin to describe how convenient this is! Let me just say, they have this infusion stuff down to an art. I sat in the comfiest remote-controlled recliner upon which my surgically altered tush has ever had the pleasure of resting. The nurse got the IV in after only 2 tries, and proceeded to hand me an iPad loaded with games and Netflix to keep me occupied as my fluids dripped in. She listened to me on the amount of fluids I felt that I needed, and basically spoiled me rotten. And if I start feeling bad again, I'm just supposed to give them a buzz, and they'll hook me up (literally) with some more fluids!

I felt like a new person after those fluids! The change in my vital signs was impressive to all, and the change in how I felt was impressive to me! I actually felt semi-human and went home and opened my mail from the past week and picked my clothes up off the floor and caught up on stupid stuff like that that falls by the wayside when I'm experiencing incapacitating fatigue.

The bottom line of today is that I need to find somebody who really specializes in POTS/dysautonomia in a big way, and based on my past experiences and conversations with the doctors today, it seems I may have to look outside of the state in order to find this person. I think that regularly getting IV fluids may have to become a normal and regular part of my treatment regime - it just helps so much! We'll see...

I am again extremely thankful for the doctors and nurses who are taking me very seriously when I say something's wrong. They are more knowledgeable than I about treating my conditions, but recognize that I don't always fit the mold, so they ask what helps me and listen to my answer. I am thankful for my mom, who cleared her schedule (skipping her Bible study and lunch with friends) to drive me in heavy traffic to and from cold and uncomfortable doctors' offices. And I am thankful for my God, who saw me through another rough day and provided an abundance of encouragement.

Hannah ;)


  1. Iv been feeling horrible for over 2 years now and if god was as good as ppl say I wouldnt still be suffering and drs say nothing more they can do they dnt even no why I feel like this nearly every day

  2. Rosie, I am so so sorry for your suffering and I pray you find some relief. You ask a hard question that merits an answer. Check back for a post on this topic.
    Take care,
    Hannah ;)