I had a follow up appointment with my rheumatologist on Monday. It went well, I think, but the state of my health/disease right now can be pretty well described with shoulder shrug.
Remember my post about blazing medical trails? The problem with doing that, is that there is no set procedure for now. Some people get the infusions and that's it, they're done. Some people go on some sort of maintenance drug. There's no set path to follow. So my doctor basically said "you seem to be doing well. I don't really know what to do with you now." (But he said it in a competent way. I don't in any way feel like he's not taking care of me).
There is a drug trial study thing that he's going to see if I qualify for. I probably don't. I'm sick enough. The trial probably is more interested in people with kidney or at least lung issues. I don't have that. Even my blood work, except for that one very specific anitbody test, has not really been that far off normal. As a data point, I'm not very useful, because there's not very good things to measure.
My doctor was really impressed, even surprised, by how much my throat has improved.
He told me to reduce the amount of prednisone I'm taking to 5mg a day, and if I don't feel terrible, I can stop taking it on January 1.
He's running some blood tests. We'll see what they show in a few days.
Basically, I'm kind of, maybe, done? It's still going to take time for me to be back to full health, or as close as I can get, but getting there at this point is just a matter of waiting and letting the rituxan do its thing.
I really am feeling better every day. I would say right now I'm functioning at about 70% normal energy levels, which is pretty good. I can breathe much better with my throat more open. My nose is still pretty junked up, and that may or may not get better without some sort of procedure/surgery.
All in all I'm doing pretty well. Hooray!
Wednesday, December 9, 2015
Thursday, December 3, 2015
I am Jack's Weird Throat
I had an appointment with Throat Doctor today, and I'll get to that at the end of this post. First, let me tell you about the deal with my throat.
Once upon a time, I thought I had severe asthma. So I went to an asthma and allergy specialist. He had me breathe in a tube and did a chest x-ray and decided that I did not have asthma, but that there was something wrong with my vocal chords. He sent me to an ENT.
The ENT stuck a tube with a camera on the end in my nose (because I also have a bunch of nose junk he needed to check out). When he was done looking at my nose, he pushed the tube farther down until he could see my vocal chords. Let me take a second here to say that it was one of more uncomfortable things I have experienced. He had me hum and stuff to make sure my vocal chords were ok (they are), but he could pretty clearly see that the problem was just below the vocal chords. Subglottic Stenosis. This ENT referred me to Nose Doctor because he didn't feel like he was equipped to handle my super crazy problems; Nose Doctor referred me to Throat Doctor because these guys are very specialized, I guess.
So what is subglottic stenosis? In English: sub = below; glottis = vocal chords; stenosis = abnormal narrowing. So, what that means, if this is a normal throat
My throat looks like this:
As you can imagine, that makes it a little hard to breathe. If you want to know what it's like, find yourself a straw, cut about an inch off one end and hold it in your mouth. Now, go about your business just breathing through the straw. You can get by doing most things as long as you don't exert yourself too much, but it's very very easy to get winded.
Subglottic stenosis can be caused by a lot of things, including GPA. It's a fairly rare symptom of GPA though, and can be a little weird. It's not necessarily indicative of a full systemic flare. Also, the presence of scar tissue there can mean that the little evil granuloma monsters have come and gone. Also, it doesn't always clear up when the GPA clears up. So sometimes there has to be surgery. Basically, they cut into the scar tissue with a laser and then inflate a balloon to dilate the opening:
Hopefully I won't have to do this. My appointment today was very promising. In fact, I have a picture for you of my very own throat:
Once upon a time, I thought I had severe asthma. So I went to an asthma and allergy specialist. He had me breathe in a tube and did a chest x-ray and decided that I did not have asthma, but that there was something wrong with my vocal chords. He sent me to an ENT.
The ENT stuck a tube with a camera on the end in my nose (because I also have a bunch of nose junk he needed to check out). When he was done looking at my nose, he pushed the tube farther down until he could see my vocal chords. Let me take a second here to say that it was one of more uncomfortable things I have experienced. He had me hum and stuff to make sure my vocal chords were ok (they are), but he could pretty clearly see that the problem was just below the vocal chords. Subglottic Stenosis. This ENT referred me to Nose Doctor because he didn't feel like he was equipped to handle my super crazy problems; Nose Doctor referred me to Throat Doctor because these guys are very specialized, I guess.
My throat looks like this:
As you can imagine, that makes it a little hard to breathe. If you want to know what it's like, find yourself a straw, cut about an inch off one end and hold it in your mouth. Now, go about your business just breathing through the straw. You can get by doing most things as long as you don't exert yourself too much, but it's very very easy to get winded.
Subglottic stenosis can be caused by a lot of things, including GPA. It's a fairly rare symptom of GPA though, and can be a little weird. It's not necessarily indicative of a full systemic flare. Also, the presence of scar tissue there can mean that the little evil granuloma monsters have come and gone. Also, it doesn't always clear up when the GPA clears up. So sometimes there has to be surgery. Basically, they cut into the scar tissue with a laser and then inflate a balloon to dilate the opening:
Hopefully I won't have to do this. My appointment today was very promising. In fact, I have a picture for you of my very own throat:
This is a side by side comparison from today (left) and my first appointment with Throat Doctor. Here it is again with more stuff drawn over it:
Clearly, there has been very significant improvement. I'm no longer breathing through a drinking straw. There is still some room for improvement, and there was a bunch of mucus down in their because my nose is messed up and I have a lot of post nasal drip (you can see a little string of it in the picture from today). But this is really awesome. It's hard evidence of major improvement. I'm extremely pleased.
I have an appointment with my rheumatologist on Monday. I'm sure he'll do a million blood tests and we'll find out if the rituxan infusions did the trick or if we need to try some more drugs. I'm optimistic, especially after seeing so much improvement in my throat.
Tuesday, December 1, 2015
Miss Me?
Yeesh, it's been two weeks since I last wrote. Sorry.
I also totally dropped the ball on my "30 days of Thanks" project too. I stopped that on the 22nd... so I missed 8 days of stating something I'm thankful for.
A couple days ago, I acknowledged to myself that it has been a long time since I blogged, and I asked myself why. The answer is complicated, and I will try to explain, but I think my lack of writing is symptomatic of an over-archingdepression... stress... disappointment ... bad-ish mood.
Last I checked in, I had gone back to work, and then taken Wednesday off to recover from going back to work. I'm still back at work, and it's going... fine? I guess. Here's the thing, getting back in the swing of working is really good. It's a step in the right direction. And, as I've mentioned before, I really like my job. And this week I'm doing really well - I might even be able to work my full 30 hours.
But
It's really really really hard.
I don't mean work itself, really, it's just the routine. Or lack there of. When the time came to go back to work, I was just really getting to a good place at home - I had enough energy to be somewhat productive, and enough time to organize and plan what I could do. I might have taken me all day to clean the kitchen, but I could do it and then I would have a clean kitchen.
I went back to work with the idea that, for the first couple weeks anyway, my goal each day, my entire to-do list, would be Work 6 hours. Anything else would be a bonus. That has been an accomplishable goal, but I would really like to do the anything else as well because I like being able to take care of my house and my stuff (I'm getting there, yesterday, I did dishes after work. Like a person who is not exhausted).
I would also really like to do something about the prednisone weight, and the extra weight I had before prednisone. Before I went back to work, I was doing a little bit of exercise every day - it was usually 10 minutes of Yoga or a short walk. I wasn't on my way to running a marathon or anything, but I felt like I was proactively working toward fixing something I was unhappy with. I definitely don't have the energy to exercise and work. Also, feeding myself is something really hard so there have been some not so great dietary choices made since I went back.
Basically, in some ways, going back to work has affected me in almost the same way being really, really sick did; I can't do anything and it's really frustrating! There are also things for me to stress about that I don't really want to write about right now.
I think there was a part of me that irrationally thought going back to work = getting back to normal. It's kind of funny how I can know that this process is going to be super long, but also be so disappointed that this process is taking so long. Disappointment. That's the darkness that has tinged my last few weeks.
There's also this thing that makes me say "what the hell, self?" Before I had a doctor tell me "You definitely are having a relapse" I was fine. Well, I mean, I couldn't breathe a lot of the time, but I was fine. I had energy and focus like a normal person. I just couldn't breathe, which is surprisingly easy to work around. It wasn't until I was officially sick that I really felt sick. Part of that was side effects from the prednisone. I can't help but wonder how much my brain had to do with it though. Do I feel sick because I know I am sick? Did I actually feel sick all along and was actually just really good at ignoring my symptoms? If that's the case, why can't I ignore my symptoms now? Ok, I know the answer to the last question: because it would be counterproductive and probably slow down the healing process.
The truth is, things really are getting better. It's slow progress, but we knew it was going to be.
I also totally dropped the ball on my "30 days of Thanks" project too. I stopped that on the 22nd... so I missed 8 days of stating something I'm thankful for.
A couple days ago, I acknowledged to myself that it has been a long time since I blogged, and I asked myself why. The answer is complicated, and I will try to explain, but I think my lack of writing is symptomatic of an over-arching
Last I checked in, I had gone back to work, and then taken Wednesday off to recover from going back to work. I'm still back at work, and it's going... fine? I guess. Here's the thing, getting back in the swing of working is really good. It's a step in the right direction. And, as I've mentioned before, I really like my job. And this week I'm doing really well - I might even be able to work my full 30 hours.
But
It's really really really hard.
I don't mean work itself, really, it's just the routine. Or lack there of. When the time came to go back to work, I was just really getting to a good place at home - I had enough energy to be somewhat productive, and enough time to organize and plan what I could do. I might have taken me all day to clean the kitchen, but I could do it and then I would have a clean kitchen.
I went back to work with the idea that, for the first couple weeks anyway, my goal each day, my entire to-do list, would be Work 6 hours. Anything else would be a bonus. That has been an accomplishable goal, but I would really like to do the anything else as well because I like being able to take care of my house and my stuff (I'm getting there, yesterday, I did dishes after work. Like a person who is not exhausted).
I would also really like to do something about the prednisone weight, and the extra weight I had before prednisone. Before I went back to work, I was doing a little bit of exercise every day - it was usually 10 minutes of Yoga or a short walk. I wasn't on my way to running a marathon or anything, but I felt like I was proactively working toward fixing something I was unhappy with. I definitely don't have the energy to exercise and work. Also, feeding myself is something really hard so there have been some not so great dietary choices made since I went back.
Basically, in some ways, going back to work has affected me in almost the same way being really, really sick did; I can't do anything and it's really frustrating! There are also things for me to stress about that I don't really want to write about right now.
I think there was a part of me that irrationally thought going back to work = getting back to normal. It's kind of funny how I can know that this process is going to be super long, but also be so disappointed that this process is taking so long. Disappointment. That's the darkness that has tinged my last few weeks.
There's also this thing that makes me say "what the hell, self?" Before I had a doctor tell me "You definitely are having a relapse" I was fine. Well, I mean, I couldn't breathe a lot of the time, but I was fine. I had energy and focus like a normal person. I just couldn't breathe, which is surprisingly easy to work around. It wasn't until I was officially sick that I really felt sick. Part of that was side effects from the prednisone. I can't help but wonder how much my brain had to do with it though. Do I feel sick because I know I am sick? Did I actually feel sick all along and was actually just really good at ignoring my symptoms? If that's the case, why can't I ignore my symptoms now? Ok, I know the answer to the last question: because it would be counterproductive and probably slow down the healing process.
The truth is, things really are getting better. It's slow progress, but we knew it was going to be.
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