A.S. Face 1211: Carlo Powe-Crawford
I’m from Rochester, Michigan, a suburb of Detroit, but I currently live in Houston, Texas now. I have AS and was diagnosed in 2004. I’ve been pretty okay, up until last year, 2013, when all hell broke lose in my body.
Prior to 2013, I’d often be plagued with uveitis, much like another Face of AS patient, Alex Rockwell, described. Doctors never could figure out why, and they’d just treat my eye inflammations and send me home. I remember having uveitis going back as far as the early 90s, when I lived in Los Angeles. A doctor there suggested that I might have an auto-immune disease, and that I should see a specialist. I did that; I did see a specialist. The problem with that was that every time I’d have an eye flareup; by the time I’d get in to see a follow up physician, my eye issue would be healed and I’d look like someone merely complaining for the sale of nothing but doing so. They’d “find nothing” and send me home.
I was diagnosed when, after several years of uveitis being in remission, suddenly it popped back up again (what else is new – that’s just AS being AS, right?). At first I didn’t know what was wrong with my eye (it always occurs only in my left eye), it was inflamed and getting worse daily, until I could take it no longer and went to William Beaumont Hospital in Royal Oak, Michigan. I’ll never forget that day. A woman I worked with was kind enough to take me there and drop me off. This time wasn’t going to be like the other times; I was determined that wouldn’t happen. And, as soon as I arrived, I remember riding in the wheelchair, telling Dr. Scott Vandenbelt that this was much more serious than a simple “eye infection” and that they had to go further to check things out. Because off and on, for years; I’d been getting infections in the same eye. He listened and did his initial exam. My eye was so inflamed and it was so difficult and so painful to sit through the exam, that it took longer than it should have. All I can remember are the bright lights and the excruciating pain.It was barely bearable. Of course nothing turned up; tests were inconclusive. That’s how AS is. It will “trick” doctors like that. But, “Dr. Scott”, a young doctor just finishing his internship, was baffled by my experience and wasn’t going to rest until he found out. he sent me for this test and that test – and everything was coming back “negative”.
I recall those last battery of tests. I’d just given more blood for testing. Dr. Scott told me that someone would call me if there was anything to report. No one called. But, the trouble was that I didn’t feel good – only this time wasn’t like all of the other times I’d felt this way. This time I was sick (tired borderline lethargic, with lower back pain that was indescribable, with a low-grade fever, and neck pain on top of that) and not only was I sick, I was sick and tired! No one had called to report anything. But, I’d “had” it so I called them. When I explained why I was calling and that, yet again, I was symptomatic, they simply said, “Please hold for the doctor” A few minutes later Dr. Scott was on the phone asking me what was going on and I vividly remember telling him that I was tired; tired of feeling like crap, tired of being sick, tired of not knowing what was wrong with my body. He asked if the nurse on duty had shared my latest test results, of which I told him “no”. He asked me to hold while he pulled my chart and when he came back he told me what had become a “running theme” for me to hear; “Your tests were negative” or “Your tests were inconclusive”. But, I think he could tell by the sound of my voice that I was simply exhausted by all this and he apologized. And, I remember him stating, “I’d send you for this “other” test, but you never said anything or complain about your back”. My response to him saying that to me was, “You’re the eye guy! Why would I complain to you about my back?” And his response to me saying that was, “I’m sending you right now for a blood culture exam”.
So, I went and gave my blood that Dr. Scott had explained would take three weeks for the results to come back.And sure enough my blood test results revealed that I was HLA-B27 POSITIVE; I’m one of the 50% of African-American people that possess’ AS.
Since that time, I’ve had mostly good days – rarely experiencing anything major, until 2013. Last year it was if my body “went crazy”. Everything intensified, except the eye inflammations. Once again, the AS related eye issue that I’ve experienced has been in remission. But, my body doesn’t know that. I have never been so sick in my life. Everyday I live with excruciating neck and/or lower (base of spine region) back pain. It’s an unbelievable thing to have your body not cooperating to do what your mind is telling it to; not immediately, like it used to, anyway. And, now I understand what the many, many years if irritable bowel symptoms has been all about; now that I’ve done the research.
I’m in pain right now, as I write this. I spend a considerable amount of hours trying to negotiate everything, because my body is racked and riddled with symptoms and pain. Everything has to be well thought out and planned. I live alone and have no no car right now. And, in a huge city like Houston, it’s really tough. Because when you’re sick and need to go out to get groceries, that represents a very big challenge. Added to that, I look about 20 years younger than I actually am and like a lot of other AS patients, I appear to “look” healthy. So, I can honestly say that there are people that I have met here in Houston who don’t believe that there’s anything wrong with me and that I’m sick. Most people don’t seem to believe me. But, what they ignore is the fact that I have tested positive and that I also have a family member, a cousin, that has also been diagnosed with AS (which “goes with the territory”). I don’t know how they attribute the fact that I never “just do anything”; I never just get up and go, not like healthy people. If you just sit back and watch me, you can tell something’s not right. When I stand up, I do so and just stand there, standing still. I have to (just stand there) because all my energy just went into doing what my brain just told my body; to stand up. And, now I’m standing there waiting for my next queue; don’t move, my body seems to be saying, while in my mind I’m already three or four steps ahead and ready to go out the door.
I never thought so many things could be such a chore; just thinking about them is troublesome, especially with no help. There have been days when I needed to go out to get something and simply resolved to not go out to get it because it represented too much “work” to get up and go do it. Living alone and not having any help, I have to go as far as placing orders for bottled water from Amazon.com – just to not have to try to figure out how to carry it up 16 stairs to get it in my house. I used to work out everyday. I’m a former union actress and model, and I was really “tiny”; 5′ 7′ tall, wearing a size 4. Now I can barely get out of the house some days, let alone go work out. Although, in my heart and mind I’d love to go do it. Not owning a car represents large challenges, especially living in Houston; a city whereby you can drive 80 miles and still be in the City of Houston! So, it’s gotten to the point that I have to pay $8 to $9 dollars for a case of bottled water; to get it delivered to my door after ordering it from Amazon.com, because I have to hold on to the railing and can’t carry it up a flight of stairs at the same time. Just walking on flat ground is painful enough as it is. So, AS is a huge inconvenience of course.
The upside is that I am still here. My lifestyle is extremely paired down because I can’t stress enough just how debilitating AS is to live with; just to get up to go to the bathroom can take me hours some days to negotiate. And, I have to laugh that some people think I’m making AS up. There are a lot of things I could think to make up, and AS isn’t one of them. I’m learning to speak up; telling people that I have it. It wrecks a lot of things – that’s for sure. I’m doing my best to hang in there though. I’m not on any medication because I haven’t been able to afford health insurance. All I’ve been taking as been Advil Gelcaps (I have to take about 8 to 10 at a time to feel anything, which isn’t good, so I try not to take it) and an occasional half of a Vicodin or Tramadol; whole doses cause me nausea. And, I have to dole them out carefully. They’re for “special”; to only take on days when I have to go somewhere, so I won’t become addicted to them and so they will last.
My biggest fear has been that a big business startup project that I’ve been working on won’t get funded if the big investor I’ve been talking to finds out. And, that within itself is more than scary to me because my business project is my “ace in the hole bailout” that’s there to help me change the lives of many people, including myself. Other than that, I don’t care what people think or say about me anymore; especially the non-believers that I’m sick (as if someone would think of making up having a chronic disease like AS). I have nothing to prove to anyone, except myself. I have simply removed all of the negative stressors that were infiltrating my life; negative people, especially. When you’re living with AS, not feeling well, and sick everyday, you value what few minutes of normalcy you might get to feel in your body. I will not tolerate all of the stupid chaos, drama, and mean-spirited I’ve experienced from time to time from people I’ve encountered, including some members of my family. Life’s just too short and my healthy-feeling days not long enough to even bother to deal with all that. So, of course I’m misunderstood but that’s alright; God knows and that’s all that matters.
If I was once again a healthy person; never to have been plagued with AS, I’d like to think I’d be kind and smart enough to think twice before I’d go judge something (or someone) that I’d clearly know nothing about. AS ain’t for the squeamish – whether you want to admit to yourself that you have it (like I didn’t – for years), that’s for damn sure. It’s just a fact of my life that, in the past year, I can no longer deny. It’s a truth that you have to face when you have those days when it’s highly “active”, to the point where it’s reeking havoc so bad that it’s making your brain cloudy because your body is so symptomatic, you can barely concentrate. That’s my experience anyway – with something I can’t deny anymore.
Someone once asked me to describe what AS feels like and this was the only way I could figure out how to describe it: Imagine being in a bad car accident – whereby the vehicle you are in tumbles off the side of an over 100ft cliff, dropping – crashing, tumbling – rolling over and over, round and round repeatedly until you eventually lose momentum and stop; and if your survived, the awful after effects you’d feel. Your bones are all mangled, your joints are all jacked up, your back and joints are racked with pain, with your neck riddled and completely uncomfortable, hence it’s also in pain. Next, imagine how your head would feel; your mind would be muddled and some days clarity wouldn’t come as easy. That’s how I feel. That’s the best way I can describe what I live with, everyday. Whether I say anything to anyone about it, that’s how I feel… every single day. That’s the only way I can think to describe it.
So yes, I’m a “Face of AS” – and this my story of living with it so far. But I’m thankful and I’m hopeful. And, more than anything, I’m grateful and I appreciate the little things; the things healthy people don’t value because they don’t pay attention to them, that they take for granted everyday.
Texas, United States of America