whats (really) wrong with me.
It's more than obvious that I haven't been blogging lately. I also haven't been crafting or going out or spending much time online. I think I've said before how I like to keep things light and fun on my blog instead of highly personal and journal-like. That just is not m
e. However, after 2 years of chronic pain, I have finally gotten a diagnosis that actually makes sense. It is no secret that I have S.A.D. and that winter makes me miserable and i find winter itself miserable. I am not one to be depressed tho. It's just a lack of sunshine that makes me so sad. A bit poetic don't you think? Nonetheless, I usually spend all winter crafting, knitting, and working on my photo portfolio and my yearly website update. This year is different though. The pain has become so overwhelming that regardless of how excited I am by my numerous projects, my poor back just won't allow me to do the things I would like to do. I have everything I need to complete this quilt (this one was made by someone I found on flickr) but my back will simply not allow me to sit in front of my sewing machine for that long. So, what the hell is actually wrong with me? It's odd, random, and makes a ton of sense. Most likely, you've never heard of it before.
To put it simply, I have arthritis. But you know, not your typical type. NOPE! I have one of the more rare forms. Psoratic Arthritis. Most people know what psoriasis is. Psoriasis is a skin condition that makes you look like a red scaly dinosaur. I however, have a mild mild form which is only on my elbow and is very receptive to topical treatment. Thank god, I am a little too vein to have something horrid like that be out of control. So for those of you that know me well, know there is nothing wrong with my hands or feet or knees. Then how is it that I have arthritis?! Well here's how. It's in my spine. Yeah... spine. Is it degenerative? It can be. They don't know about mine yet though. What does that mean for me long term? Well, my joints could fall to bits and I could end up getting unsuccessful back surgery. But let's not get ahead of ourselves. What the hell is this anyway? I'll tell you. I have Spondylitis, a form of PA that is the pretty rare and often times misdiagnosed as simply back pain since in order to be diagnosed with this type of PA, you do not have to have pain or swelling in the joints in your hands. Many lazy doctors who do not want to put any effort into trying to figure out a difficult diagnosis often chalk it up to fibromyalgia. It's a bucket diagnosis and requires few tests and hype new drugs that most likely paid for doctors trips to various golf courses. But hey, these drugs are safe right? But back to the point. What is spondylitis?
"Spondylitis is inflammation of the the spinal column. In about 5 percent of individuals with psoriatic arthritis, spondylitis is the predominant symptom. Inflammation with stiffness of the neck, lower back, sacroiliac or spinal vertebrae are common symptoms in a larger number of patients, making motion painful and difficult. Peripheral disease can be present in the hands, arms, hips, legs and feet."
Yup, its real. I plan on writing a letter to that primary care doctor of mine. The one I saw in Nov '05 that looked at me and told me that there was nothing wrong with me and that I was lying about my pain. He made me cry and also made me feel like maybe I was crazy and the pain wasn't real. Screaming at him made no difference. Please take a few seconds and read this article that Teri left for me on my del.icio.us. It is heart breaking (and not to mention long) But the end is terribly sad. Please be aware that those with chronic pain suffer more than you know.
I miss you all. I'm not hiding on purpose.
e. However, after 2 years of chronic pain, I have finally gotten a diagnosis that actually makes sense. It is no secret that I have S.A.D. and that winter makes me miserable and i find winter itself miserable. I am not one to be depressed tho. It's just a lack of sunshine that makes me so sad. A bit poetic don't you think? Nonetheless, I usually spend all winter crafting, knitting, and working on my photo portfolio and my yearly website update. This year is different though. The pain has become so overwhelming that regardless of how excited I am by my numerous projects, my poor back just won't allow me to do the things I would like to do. I have everything I need to complete this quilt (this one was made by someone I found on flickr) but my back will simply not allow me to sit in front of my sewing machine for that long. So, what the hell is actually wrong with me? It's odd, random, and makes a ton of sense. Most likely, you've never heard of it before.To put it simply, I have arthritis. But you know, not your typical type. NOPE! I have one of the more rare forms. Psoratic Arthritis. Most people know what psoriasis is. Psoriasis is a skin condition that makes you look like a red scaly dinosaur. I however, have a mild mild form which is only on my elbow and is very receptive to topical treatment. Thank god, I am a little too vein to have something horrid like that be out of control. So for those of you that know me well, know there is nothing wrong with my hands or feet or knees. Then how is it that I have arthritis?! Well here's how. It's in my spine. Yeah... spine. Is it degenerative? It can be. They don't know about mine yet though. What does that mean for me long term? Well, my joints could fall to bits and I could end up getting unsuccessful back surgery. But let's not get ahead of ourselves. What the hell is this anyway? I'll tell you. I have Spondylitis, a form of PA that is the pretty rare and often times misdiagnosed as simply back pain since in order to be diagnosed with this type of PA, you do not have to have pain or swelling in the joints in your hands. Many lazy doctors who do not want to put any effort into trying to figure out a difficult diagnosis often chalk it up to fibromyalgia. It's a bucket diagnosis and requires few tests and hype new drugs that most likely paid for doctors trips to various golf courses. But hey, these drugs are safe right? But back to the point. What is spondylitis?
"Spondylitis is inflammation of the the spinal column. In about 5 percent of individuals with psoriatic arthritis, spondylitis is the predominant symptom. Inflammation with stiffness of the neck, lower back, sacroiliac or spinal vertebrae are common symptoms in a larger number of patients, making motion painful and difficult. Peripheral disease can be present in the hands, arms, hips, legs and feet."
Yup, its real. I plan on writing a letter to that primary care doctor of mine. The one I saw in Nov '05 that looked at me and told me that there was nothing wrong with me and that I was lying about my pain. He made me cry and also made me feel like maybe I was crazy and the pain wasn't real. Screaming at him made no difference. Please take a few seconds and read this article that Teri left for me on my del.icio.us. It is heart breaking (and not to mention long) But the end is terribly sad. Please be aware that those with chronic pain suffer more than you know.
I miss you all. I'm not hiding on purpose.
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