(no subject)
Holy.shit.
So I've officially been in rehab for two days. The Chronic Pain Rehabilitation Program (CPRP) at the Cleveland Clinic. President Obama was here today, but things were all barricaded. Anywho, CPRP is not at all what I envisioned it'd be. I thought it'd be a lot more physical therapy and a lot less...rehab-like. It's definitely rehab. Most of the people here are in the Chemically Dependent (CD) track. The CD group has to go through a 12-step program and are weaned off of all medication. There are about 15 of us total, CD and non-CD. I'm obviously non-CD since I've taken Vicodin once in the past two months. The program takes up most of my day; I leave the hotel (which is just off the Clinic's campus) at 7:15 and get back just after 6 Monday through Friday. The program mixes physical therapy, occupational therapy, group and individual psychotherapy, biofeedback, coping skills training, and pain management medication.
After 7 years of PT, I didn't have high hopes for things, but I can already feel a slight improvement. And occupational therapy (OT) taught me today that using a lumbar pillow drastically reduces my pain while driving and sitting in some chairs. Something about the way it presses on the spine and alters your alignment. It's amazing. The psychiatrists feel the need to dig out every skeleton in my closet, which I'm really not okay with, but since my pain has been around for my entire conscious life, most of my memories are intertwined with my physical pain. I hate crying in front of people. I already have most of the "coping skills" they teach mastered (i.e. keeping busy to distract yourself from the pain, deep breathing to get through the worst of it, etc.). It's the only way I've been able to steer away from a Vicodin addiction, and seeing these guys going through withdrawal is making me very grateful for making the decisions I have. They've started me on Cymbalta and Neurontin, neuropathic/non-opioid pain medicines that double as antidepressants. Though they make me nauseous, I'm thankful for them. I am a little concerned because dependence can occur on these meds, nowhere near the severity of opioid dependence, but it still makes me hesitant. And you cannot take these meds while pregnant or trying for pregnancy, which I don't like. Regardless, they should help take the edge off for now without knocking me out or getting me hooked.
I'm meeting a lot of interesting people here, too. Some I think are full of shit. If you walk out of here "cured" after the 3-week program, you weren't fucking disabled. But a fair chunk of these people definitely have it worse than I do, and it makes me grateful that I'm not paralyzed or blind or have a high spinal chord injury that has fucked up my entire nervous system. I can still grip a fork to eat. And I can stand up on my own. I'm lucky. The CPRP emphasizes the importance of being a person rather than a patient. Most of us with chronic pain become obsessed with it and only see ourselves as a disability. When we first meet up, we instantly exchange stories about surgeries, doctors, misdiagnoses, and our years of pain and being treated as some crazy outsider. I feel normal here, which is a new feeling for me. However, they strongly discourage us from talking about our pain with each other to keep us from dwelling on it. "Pain" is a 4-letter word in the Clinic, and it isn't to be used. They also don't respond to our "pain behavior", so if I'm deep breathing or rubbing my leg or crying or whatever because of the pain, they won't acknowledge it. Which is weird. They have amazing poker faces, but the staff is amazing, and everyone is super laid back and has an awesome sense of humor.
Of course, we can't help but be curious and ask each other about our conditions when we're away from the staff, namely in the cafeteria for lunch. As part of my "initiation" to the lunch table, I was asked about my pain and medical history. After I gave them the brief overview and had to shamefully admit that no one knows what's wrong and that I have no diagnosis, one woman piped up and asked me if I had a series of other strange symptoms. I had all of them. She suggested I look up the genetic condition Ehlers-Danlos Syndrome. She has it. I'd seen it before on Discovery Health Channel, but didn't think it applied to me. When I got back to my hotel room today, I looked it up. There are 6 types of Ehlers-Danlos. Unfortunately, that poor woman has the one type that shortens your life-span, Type 4. I looked through all of the symptom lists for each Type, and completely froze after reading the Type 3 description. Type 3 is called Hypermobility Type. It is characterized by hypermobile joints, frequent dislocations and subluxations, flat feet, dental crowding, easy bruising, muscle weakness (even moreso in cold), early onset of osteoarthritis, and cardiac effects, namely mitral valve prolapse. All of my joints are hypermobile. I've dislocated or subluxed nearly every major joint. I have horribly flat feet. The whole reason I got braces was from dental crowding, and they've recrowded since my braces have been removed. My yellow arm from having blood drawn today is a demonstration of my easy bruising. I have chronic muscle weakness, which is why I've needed years of PT, and it's definitely worse in winter. I was diagnosed with osteoarthritis when I was 11. And I was diagnosed with mitral valve prolapse in high school. I fit every symptom to a T. Never have I ever experienced this, and I've spent the past 12 years searching like crazy, looking up everything I could think of. And the pain this woman experiences sounds just like mine.
Now I just need an official diagnosis. There are no real tests for this genetic condition, so it's diagnosed via medical history and observation. If I could leave here with a diagnosis, I could go home with closure, and that would be the biggest step toward recovery I've ever had. The good news: Type 4 Ehlers-Danlos does not affect life-span and isn't seriously degenerative, so I wouldn't get much worse. The bad news: It's associated with chronic pain (which I obviously have) and there is no real treatment or cure. The best I can do is keep breathing, keep exercising to combat the muscle weakness which accentuates my pain, and live with it. But I honestly think I could live with this pain as long as I knew for sure that it wasn't life- or limb-threatening, that I'll live a full life, and that I've done everything I could to minimize it. I need a diagnosis to close this 12-year chapter in my life. I'm sick of playing detective.
Life is...crazy. But I think it's starting to look up.
So I've officially been in rehab for two days. The Chronic Pain Rehabilitation Program (CPRP) at the Cleveland Clinic. President Obama was here today, but things were all barricaded. Anywho, CPRP is not at all what I envisioned it'd be. I thought it'd be a lot more physical therapy and a lot less...rehab-like. It's definitely rehab. Most of the people here are in the Chemically Dependent (CD) track. The CD group has to go through a 12-step program and are weaned off of all medication. There are about 15 of us total, CD and non-CD. I'm obviously non-CD since I've taken Vicodin once in the past two months. The program takes up most of my day; I leave the hotel (which is just off the Clinic's campus) at 7:15 and get back just after 6 Monday through Friday. The program mixes physical therapy, occupational therapy, group and individual psychotherapy, biofeedback, coping skills training, and pain management medication.
After 7 years of PT, I didn't have high hopes for things, but I can already feel a slight improvement. And occupational therapy (OT) taught me today that using a lumbar pillow drastically reduces my pain while driving and sitting in some chairs. Something about the way it presses on the spine and alters your alignment. It's amazing. The psychiatrists feel the need to dig out every skeleton in my closet, which I'm really not okay with, but since my pain has been around for my entire conscious life, most of my memories are intertwined with my physical pain. I hate crying in front of people. I already have most of the "coping skills" they teach mastered (i.e. keeping busy to distract yourself from the pain, deep breathing to get through the worst of it, etc.). It's the only way I've been able to steer away from a Vicodin addiction, and seeing these guys going through withdrawal is making me very grateful for making the decisions I have. They've started me on Cymbalta and Neurontin, neuropathic/non-opioid pain medicines that double as antidepressants. Though they make me nauseous, I'm thankful for them. I am a little concerned because dependence can occur on these meds, nowhere near the severity of opioid dependence, but it still makes me hesitant. And you cannot take these meds while pregnant or trying for pregnancy, which I don't like. Regardless, they should help take the edge off for now without knocking me out or getting me hooked.
I'm meeting a lot of interesting people here, too. Some I think are full of shit. If you walk out of here "cured" after the 3-week program, you weren't fucking disabled. But a fair chunk of these people definitely have it worse than I do, and it makes me grateful that I'm not paralyzed or blind or have a high spinal chord injury that has fucked up my entire nervous system. I can still grip a fork to eat. And I can stand up on my own. I'm lucky. The CPRP emphasizes the importance of being a person rather than a patient. Most of us with chronic pain become obsessed with it and only see ourselves as a disability. When we first meet up, we instantly exchange stories about surgeries, doctors, misdiagnoses, and our years of pain and being treated as some crazy outsider. I feel normal here, which is a new feeling for me. However, they strongly discourage us from talking about our pain with each other to keep us from dwelling on it. "Pain" is a 4-letter word in the Clinic, and it isn't to be used. They also don't respond to our "pain behavior", so if I'm deep breathing or rubbing my leg or crying or whatever because of the pain, they won't acknowledge it. Which is weird. They have amazing poker faces, but the staff is amazing, and everyone is super laid back and has an awesome sense of humor.
Of course, we can't help but be curious and ask each other about our conditions when we're away from the staff, namely in the cafeteria for lunch. As part of my "initiation" to the lunch table, I was asked about my pain and medical history. After I gave them the brief overview and had to shamefully admit that no one knows what's wrong and that I have no diagnosis, one woman piped up and asked me if I had a series of other strange symptoms. I had all of them. She suggested I look up the genetic condition Ehlers-Danlos Syndrome. She has it. I'd seen it before on Discovery Health Channel, but didn't think it applied to me. When I got back to my hotel room today, I looked it up. There are 6 types of Ehlers-Danlos. Unfortunately, that poor woman has the one type that shortens your life-span, Type 4. I looked through all of the symptom lists for each Type, and completely froze after reading the Type 3 description. Type 3 is called Hypermobility Type. It is characterized by hypermobile joints, frequent dislocations and subluxations, flat feet, dental crowding, easy bruising, muscle weakness (even moreso in cold), early onset of osteoarthritis, and cardiac effects, namely mitral valve prolapse. All of my joints are hypermobile. I've dislocated or subluxed nearly every major joint. I have horribly flat feet. The whole reason I got braces was from dental crowding, and they've recrowded since my braces have been removed. My yellow arm from having blood drawn today is a demonstration of my easy bruising. I have chronic muscle weakness, which is why I've needed years of PT, and it's definitely worse in winter. I was diagnosed with osteoarthritis when I was 11. And I was diagnosed with mitral valve prolapse in high school. I fit every symptom to a T. Never have I ever experienced this, and I've spent the past 12 years searching like crazy, looking up everything I could think of. And the pain this woman experiences sounds just like mine.
Now I just need an official diagnosis. There are no real tests for this genetic condition, so it's diagnosed via medical history and observation. If I could leave here with a diagnosis, I could go home with closure, and that would be the biggest step toward recovery I've ever had. The good news: Type 4 Ehlers-Danlos does not affect life-span and isn't seriously degenerative, so I wouldn't get much worse. The bad news: It's associated with chronic pain (which I obviously have) and there is no real treatment or cure. The best I can do is keep breathing, keep exercising to combat the muscle weakness which accentuates my pain, and live with it. But I honestly think I could live with this pain as long as I knew for sure that it wasn't life- or limb-threatening, that I'll live a full life, and that I've done everything I could to minimize it. I need a diagnosis to close this 12-year chapter in my life. I'm sick of playing detective.
Life is...crazy. But I think it's starting to look up.