A lot of medical stuff and then some fun stuff

Apologies for the lack of updates, but I’ve really been in matinenance mode for the past several weeks. I’m going to provide a pretty lengthy update, so feel free to skim (however, make sure to read the last couple of paragraphs for an exciting development!), but I’ve had enough questions asked that I figured it was time for an update.

The good news is that the pain meds and the stomach meds are doing a decent job of controlling the pain – most of my days are pretty good, a few of my days are more on the uncomfortable side where I just want to chill in bed and rest, thankfully the intensity of those days is less than it used to be. I think that is because my insides are slowly starting to heal from all the erosion and stuff that has been going on. It turns out that the stomach med I am taking (the one that controls acid) is actually working – I know this because I ran out about two weeks ago and since there were some communication issues between my pharmacy, my insurance, and my GI doctor, I got to experience being off of the meds for almost two weeks, during which my pain levels increased, so the med is definitely helping my controlling my acid production.

My other stomach issue, the paralysis, is currently untreated. It’s a long story but because I wasn’t convinced that my GI doctor’s next plan of attack was the right way to go, we experimented by ceasing the stomach contracting med to determine where the pain was coming from, the paralysis or something else. After four days of no stomach contracting meds, I was to report back to my doc. I did and am still awaiting further instructions. While I’m pretty frustrated with my GI doc right now, at least this almost four week span of no stomach contracting meds has shown that the paralysis isn’t causing the more intense pain, just the nausea-stomach-full uncomfortableness I experience when I eat.

 Almost in parallel, my rheumo doc and I have been conducting our own experiments. Six weeks ago, during a routine visit, he asked me if it wasn’t for the GI issues, how would I be feeling? I told him I think I would be feeling better, I wasn’t noticing any joint pain, I didn’t have fatigue (besides that from the heavier pain meds), and no fevers. Considering that I am on a ridiculous amount of medication right now, and if the Benlysta is working, there is no need to be so medicated, so we decided to reduce two of my immunosuppressive meds. About two weeks into the “experiement”, my joint pain started coming back, as well as the fevers and fatigue. I put up with it for about two weeks until it started interfering with my sleep and then I cried “uncle” and called in to tweak the meds. We decided to increase one of the meds back to the initial dose but keep the other the same. The joint pain got a little better, but my fevers continued – I was spiking a fever between 99-100 several times a day, and we all know how fevers make you feel.

This past week, after dealing with the non-communicating GI doc, unsuccessfully trying to get into two different new GI docs for a second opinion, and having a rough pain and fever day, I had another appointment with the rheumo doc. He walked in and said “how are you feeling?” and my response was “generally, things are better, but today is bad” and he said “yeah, you’re looking pretty puny”. Gee, thanks doc.

I relayed to him all the GI drama and he stormed out of the room and returned a few minutes later with his arms full of my stomach med samples. Thanks to him, I now have two months worth of my meds, saving me a LOT of money and hopefully a lot of pain. He then stormed out again, proceeded to call one of the other GI docs who I had tried to get into see and arranged a placeholder appointment for me, all I had to do was call in and give them my info.

 I sat there, stunned, almost ready to cry, reminded that there are doctors out there that really care about their patients and have their best interests in mind and I was reminded of the hinds feet that He is growing through this sometimes frustrating process: “He made my feet like the feet of the deer and set me secure on the heights" (2 Samuel 22:34, similarly Habakkuk 3:19). I had been grumbling about the inattentiveness of my doctors and not reminding myself of how my God is providing for me, even when I can’t see how things are going to work out.

Since my lupus symptoms are unstable right now with the almost constant fevers and joint pain, we’ve had to increase my immunosuppressive meds again. Surprisingly, I am not that disappointed about this. I think I am getting more used to this being my “normal” state and I found myself being less bummed and bitter about having to ingest more medication. I’m thankful to the Lord for how He is changing my attitude and making me more adaptable and accepting of things. Again, proof of the lessons that He is teaching me as those deer feet are growing (um, if all this deer feet stuff is weirding you out, check out my blog post on it, it might make a little more sense...or not...shrug...but I am most happy to answer any questions about it!).

But the incredibly great news, which will probably seem surprising after reading all this medical stuff, is that my rheumo doc actually cleared me to take a spontaneous trip to Italy next month with some friends (yeah, you read that right, Italy :) ). So many doors have opened to make this trip possible and I am really excited to do something I absolutely love to do – travel to and explore new places with great company. I’m taking my usual pharmacy with me :) as well as some additions my rheumo doc is sending along just in case. He is also putting together a folder with a summary of my medical history in case I need to seek medical attention while over there. And I am purchasing special travel medical insurance too. Of course, if something healthish changes between now and then, I will be wise and cancel the trip, but I am hoping and praying that this will all work out.

I am thrilled that I can actually contemplate going overseas right now. Even with the joint pain and fevers, I’m so much better than I was a couple of months ago, the meds are working well, and the friends I am traveling with know my issues and potential limitations and will be looking after me. I love how God’s plan has these unexpected blessings – I never would have thought of a trip, but He did. I was too disillusioned with my GI doctor to see the blessing of my rheumo doc, but He reminded me. What a gracious God I have who patiently redirects my attention back to His grace and mercy, rather than my own grumpiness and lack of faith.