Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Wednesday, December 2, 2009
Anniversaries.
One year ago today I had the flare-up that changed my life. It was the first time I had one of these episodes and didn't have much recovery. It was also the first time someone in my life really pushed me to follow up with a doctor and figure out what was going on. Despite all the difficulties of the past year, I'm still optimistic about my future and confident that things will get better.
Tuesday, May 5, 2009
Not giving up, mourning my old self, and finding a new normal
I'm in mourning. For many years I've denied I was sick and now that there is no question that something is wrong with me, I have to start accepting the new me. The MS me.
Initially, I intended to live my life post-diagnosis, just as I'd lived pre-diagnosis. The major problem with doing that is that the last few months before receiving my diagnosis were not "normal." My last major relapse was the first Wednesday in December 2008. It marked the last time I worked a full week and the last time I would be able to ignore my symptoms. The hardest part about going to the ER that time was not knowing what to tell the doctor and what was normal. Many of the symptoms that I've experienced full-time since December, started many years ago. I remember having this leg pain in high school and again in college after taking a dance class (which lead me to an orthopedic surgeon, 13 months on crutches/cane, and knee surgery). I've had numbness in my hands since high school (tendonitis) and all throughout my time at Colby and now in California (carpal tunnel, arthritis). Even the left eye blindness isn't new, that happened in August 2005.
What is new, is my acceptance and acknowlegment that I'm sick. And that I'm not making this up. (Oh, and the bladder dysfunction, which sent me running back to my neuro's office in February, that's new.) The question then becomes, if my symptoms aren't new, why do I seem so much sicker now. Well, three reasons.
1. For the past 6+ years, I've sought medical help and each time been told that there's nothing wrong with me. Everyone thought I was a hypochondriac and it began to hurt my friendships and relationships. So instead of talking about it, I ignored it. Even when it got really bad that I couldn't hide it, I would resist medical treatment because I couldn't stand having people think I was making things up. Until I got really sick in front of Nilaja and she wouldn't let me ignore it. As much I wanted to accept that I was having another really bad atypical migraine, she didn't believe it and pushed me to follow-up with a neurologist. Since then, I've been more honest about my health than ever before. What I've endured every day for the past few years is shocking and mean seem impossible to anyone who doesn't have a chonic illness, but there are tons of people wiht my story. We endure because we have to, until someone tells us that we have to slow down if we don't want to be crippled. That's where I am.
2. There is no question in my mind that the Avonex was making me sicker. Not just emotionally, but also physically. I don't know the mechanisms that make it an effective treatment, but it did not agree with me. I need to wait for 5 weeks of medicine to get out of my system before before I can really gauge my progress. I would like to find a new one and hope that it doesn't make me sicker. I also have to remember that no matter what medication I take, they do not cure the disease or send you into remission. It's like being in a moving car with no park or reverse gear. All I can do is speed it up or slow it down. The disease modifying agents slow things down. The disease doesn't stop progressing, but if the medication works, I may be able to slow the progression down enough to avoid complete disability.
3. The third reason that I think I'm sicker now may be due to the natural progression of my disease. This seems unlikely if you think of the disease beginning in March 2009. Especially if you believe I was healthy in February. Or even if you think of me being healthy in November, my current levels are pretty shocking. But I think of my disease in a broader scope. I count all of my major episodes- Hospital visits Dec 08, Jan 07, Dec 05, Jul 04, Oct 03; vision loss Aug 05- along with the doctor visits for numbness, tingling, muscle pain and weakness, and there's evidence of the disease from at least 1999-2000. So when I think about the disease in these terms, it's not so surprising that I'm where I am or that some of my symptoms are advanced.
But this doesn't mean that I'm going to sit back and let the disease take over. Not at all! I'm still fighting just as hard as before, but I've decided on a new goal. I can't keep fighting to get back to the normal I had before any symptoms showed up. That normal disappeared over 6 years ago, and it's hard to realize that I will never see that again. What I need to do now is find my new normal. Figure out what my very best is and work to maintain that, because no matter how hard I try I will always fail at reaching the old normal. I don't like failing, it makes me depressed, so I am making new goals for myself and will stop allowing the depression to be a weight on my shoulders.
Now I just need to learn how to fully manage my symptoms...
Initially, I intended to live my life post-diagnosis, just as I'd lived pre-diagnosis. The major problem with doing that is that the last few months before receiving my diagnosis were not "normal." My last major relapse was the first Wednesday in December 2008. It marked the last time I worked a full week and the last time I would be able to ignore my symptoms. The hardest part about going to the ER that time was not knowing what to tell the doctor and what was normal. Many of the symptoms that I've experienced full-time since December, started many years ago. I remember having this leg pain in high school and again in college after taking a dance class (which lead me to an orthopedic surgeon, 13 months on crutches/cane, and knee surgery). I've had numbness in my hands since high school (tendonitis) and all throughout my time at Colby and now in California (carpal tunnel, arthritis). Even the left eye blindness isn't new, that happened in August 2005.
What is new, is my acceptance and acknowlegment that I'm sick. And that I'm not making this up. (Oh, and the bladder dysfunction, which sent me running back to my neuro's office in February, that's new.) The question then becomes, if my symptoms aren't new, why do I seem so much sicker now. Well, three reasons.
1. For the past 6+ years, I've sought medical help and each time been told that there's nothing wrong with me. Everyone thought I was a hypochondriac and it began to hurt my friendships and relationships. So instead of talking about it, I ignored it. Even when it got really bad that I couldn't hide it, I would resist medical treatment because I couldn't stand having people think I was making things up. Until I got really sick in front of Nilaja and she wouldn't let me ignore it. As much I wanted to accept that I was having another really bad atypical migraine, she didn't believe it and pushed me to follow-up with a neurologist. Since then, I've been more honest about my health than ever before. What I've endured every day for the past few years is shocking and mean seem impossible to anyone who doesn't have a chonic illness, but there are tons of people wiht my story. We endure because we have to, until someone tells us that we have to slow down if we don't want to be crippled. That's where I am.
2. There is no question in my mind that the Avonex was making me sicker. Not just emotionally, but also physically. I don't know the mechanisms that make it an effective treatment, but it did not agree with me. I need to wait for 5 weeks of medicine to get out of my system before before I can really gauge my progress. I would like to find a new one and hope that it doesn't make me sicker. I also have to remember that no matter what medication I take, they do not cure the disease or send you into remission. It's like being in a moving car with no park or reverse gear. All I can do is speed it up or slow it down. The disease modifying agents slow things down. The disease doesn't stop progressing, but if the medication works, I may be able to slow the progression down enough to avoid complete disability.
3. The third reason that I think I'm sicker now may be due to the natural progression of my disease. This seems unlikely if you think of the disease beginning in March 2009. Especially if you believe I was healthy in February. Or even if you think of me being healthy in November, my current levels are pretty shocking. But I think of my disease in a broader scope. I count all of my major episodes- Hospital visits Dec 08, Jan 07, Dec 05, Jul 04, Oct 03; vision loss Aug 05- along with the doctor visits for numbness, tingling, muscle pain and weakness, and there's evidence of the disease from at least 1999-2000. So when I think about the disease in these terms, it's not so surprising that I'm where I am or that some of my symptoms are advanced.
But this doesn't mean that I'm going to sit back and let the disease take over. Not at all! I'm still fighting just as hard as before, but I've decided on a new goal. I can't keep fighting to get back to the normal I had before any symptoms showed up. That normal disappeared over 6 years ago, and it's hard to realize that I will never see that again. What I need to do now is find my new normal. Figure out what my very best is and work to maintain that, because no matter how hard I try I will always fail at reaching the old normal. I don't like failing, it makes me depressed, so I am making new goals for myself and will stop allowing the depression to be a weight on my shoulders.
Now I just need to learn how to fully manage my symptoms...
Tuesday, March 10, 2009
Diagnosis: The real day one
I was diagnosed only 5 days ago. Thursday, March 5, 2009-3:02 pm. I had my MRI the previous morning, and was anxious to find out what was really going on.
I promised my partner that I would wait until Friday to call my doctor, but I couldn't wait. When I called his office a few hours after having the MRI and they said my results would be ready the next day, Thursday, I knew I had to call. So after meeting her for lunch and settling into the car to wait for her to finish working, I had to make that call. I tried to listen to music or read a book, but I couldn't focus on anything but hearing my doctor tell me I had Multiple Sclerosis. So, after sitting there for 20 minutes, I called Dr. Friedberg's office. Emily answered and as soon as I gave her my name, her voice dropped. She put me on hold while she got my file, and I closed my eyes and fought back the tears. I'd pictured this moment in my head and I'd done all the research possible, so there was no reason to be nervous or scared. When Dr. Friedberg answered, I cheerfully greeted him and waited for the news. He was obviously nervous about giving that type of information over the phone, and opted to read the radiologist report to me. By the tenth five-syllable word, I interrupted and asked what he was trying to tell me. "Multiple Sclerosis," he said. And all I could do was exhale.
After a few moments of silence, he asked if I was alright and I told him that I was fine and was expecting the diagnosis. Between my weird symptoms and my google-taught reading of the MRI, I knew my answer. Though I would not say those two words until he said it first. We set up a follow-up appointment for the next day, I thanked him, and we ended our call. Feelings of relief and remorse washed over me. For the first time I had an answer. I'd suffered countless mystery illnesses all diagnosed as stress, anxiety, fatigue, or my favorite, "obesity-related." Yep, when I lost vision in my left eye, all I had to do was lose weight and take a nap and my vision would return. I'm still waiting for that to happen.
At the same time, all my dreams of the future started fading away. Would I even have the strength to be a career woman, mother, and domestic diva? Is it fair to my fiance to spring this on her less than 150 days before our wedding? This scared me. So, I called her and she came out to the car to sit with me for a bit. She was not afraid or stunned or apprehensive. She told me to get my crying out and then we need to make plans to live our best life possible. Wow. There was no time to hide under the covers or recoil from my daily life. I need to take this diagnosis as a jumpstart to life.
That's how I ended up here. For years I've wanted to start a blog about my life, but never felt there was anything to write about. Now there is. This blog will not just be about MS, it will be about my life. The good, the bad, and the hot mess ugly. It will be a way for me to talk about how this diagnosis is a wake up call for me to stop putting life off for tomorrow, because tomorrow I may not be able to walk, make homemade pie crust, crochet, or type out all the things I have floating in my head. I feel more alive today than I have in the entire 24+ years I've been alive. I hope you enjoy my journey.
I promised my partner that I would wait until Friday to call my doctor, but I couldn't wait. When I called his office a few hours after having the MRI and they said my results would be ready the next day, Thursday, I knew I had to call. So after meeting her for lunch and settling into the car to wait for her to finish working, I had to make that call. I tried to listen to music or read a book, but I couldn't focus on anything but hearing my doctor tell me I had Multiple Sclerosis. So, after sitting there for 20 minutes, I called Dr. Friedberg's office. Emily answered and as soon as I gave her my name, her voice dropped. She put me on hold while she got my file, and I closed my eyes and fought back the tears. I'd pictured this moment in my head and I'd done all the research possible, so there was no reason to be nervous or scared. When Dr. Friedberg answered, I cheerfully greeted him and waited for the news. He was obviously nervous about giving that type of information over the phone, and opted to read the radiologist report to me. By the tenth five-syllable word, I interrupted and asked what he was trying to tell me. "Multiple Sclerosis," he said. And all I could do was exhale.
After a few moments of silence, he asked if I was alright and I told him that I was fine and was expecting the diagnosis. Between my weird symptoms and my google-taught reading of the MRI, I knew my answer. Though I would not say those two words until he said it first. We set up a follow-up appointment for the next day, I thanked him, and we ended our call. Feelings of relief and remorse washed over me. For the first time I had an answer. I'd suffered countless mystery illnesses all diagnosed as stress, anxiety, fatigue, or my favorite, "obesity-related." Yep, when I lost vision in my left eye, all I had to do was lose weight and take a nap and my vision would return. I'm still waiting for that to happen.
At the same time, all my dreams of the future started fading away. Would I even have the strength to be a career woman, mother, and domestic diva? Is it fair to my fiance to spring this on her less than 150 days before our wedding? This scared me. So, I called her and she came out to the car to sit with me for a bit. She was not afraid or stunned or apprehensive. She told me to get my crying out and then we need to make plans to live our best life possible. Wow. There was no time to hide under the covers or recoil from my daily life. I need to take this diagnosis as a jumpstart to life.
That's how I ended up here. For years I've wanted to start a blog about my life, but never felt there was anything to write about. Now there is. This blog will not just be about MS, it will be about my life. The good, the bad, and the hot mess ugly. It will be a way for me to talk about how this diagnosis is a wake up call for me to stop putting life off for tomorrow, because tomorrow I may not be able to walk, make homemade pie crust, crochet, or type out all the things I have floating in my head. I feel more alive today than I have in the entire 24+ years I've been alive. I hope you enjoy my journey.
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