Thank you for the positive feedback I received after yesterday's post. I was initially considering removing the post, but it seems that I can leave it in without bothering anyone.
Today, I was manic. That is all there is to it. We've known for several years that I can experience a manic episode, often as a reaction to medication. This time, I woke up with a racing mind and the to-do list going through my head, but when I took my daily dose of Provigil, the racing got faster and out of control. When it was no longer bearable, or safe, I took some Klonopin to help calm me down. It took some time for the two meds to balance out in my system. I tried to conquer the world in one day. The exhaustion is just setting in, although the pain set in hours ago. So, I will try to calm my racing thoughts, keep writing tasks on my endless to-do lists, and try to do only one thing at a time for the rest of the night. I will also put off writing any more in my blog for tonight, and try to go to sleep early, for once.
Thursday, April 30, 2009
Wednesday, April 29, 2009
Symptom Watch, Books, and Another Important Person
So, today was not great. I was very nauseated, very tired, had a pressure headache, and my spine felt like a shrunken accordion. It just feels like a heavy weight is sitting on top of my head, and squishing my whole spine downward. For this reason, I'm needing to wear my aspen collar anytime I am not resting. I also had hypersensitivity today, where it hurts all over my body. This includes my skin itself feeling sore and my muscles feeling bruised. So it was a no-touch day. Luckily, Provigil came to my rescue again. It does nothing for pain or nausea. But what it does is nothing short of amazing (now that my system has gotten adjusted it). My feelings of lethargy really are relieved by this medication. It usually gives me the willpower to get through another day of work, or at least existence. It's not an anti-depressant, but I do think it helps my mood, as well. So, I'd like to say that this is really GOOD news. To me, this medication means that whenever I have surgery, and however much it helps, I should never be restricted to bed full-time again (excluding post-surgery, of course). This may be a little extreme. But I'm so glad to have it in my arsenal. Nothing else has ever fought fatigue like Provigil does. And guess what? If I want a day of rest and sleep, because the pain has become to much, I just skip a dose. The doctor hasn't technically approved this, but I know that I can skip a dose for a day, and be allowed to get a good solid nap in. This gives my body time for recuperation. If I don't skip my Provigil ever, then my pain can really build up. You still need to give your body time to rest. And on daily Provigil, I can become almost manic, and find it impossible to rest.
Besides this, I finished reading my book today (The Invisible Man, by Ralph Ellison). I've decided that it truly is a literary masterpiece, even if the style isn't what I'm used to reading. So, I'm glad that I read it. Ever since my first surgery, I find concentration to be a challenge, and my speed of thinking seems to be slower. That makes reading a more difficult task than it used to be. It takes me much longer to finish a book than I ever expect it to. I used to race through books so quickly. This could be neurological, but it is probably also related to the constant pain I live in. Nonetheless, I can't stop reading. As long as my eyes don't hurt too badly, I always read before bed (which isn't always a great idea when you're on sedatives...you fall asleep with the flashlight on and lose your place).
So, I started a new book right away. For a big change of pace, I picked The Last Lecture, by Randy Pausch. I'm sure I'll get through this one quickly (for me). It's already really got me thinking...not necessarily about the essential content of the lecture (living out childhood dreams), but about how unimaginable it would be to me to lose my chosen life partner. I've been in love before, but this is the first time that I truly have my expectations for my future in place. The thought of a terminal illness afflicting my Gustavo, or any one of my other loved ones, is truly terrifying. Of course, chances are, this won't happen. But I want to make sure that everyone in my life knows how much they mean to me. I don't want to regret not expressing something that I feel. This is a huge undertaking, but I'm going to do my best.
Since I've already started, I'm going to try to explain just how important Gustavo is in my life. If you can't handle sappy, feel free to ignore the rest of this post (and no, you are not excused, Gus). Gus and I met during our senior year of high school. I really hated high school...and not just a little. Not the way a normal person hates school. By my senior year, I was bursting out into tears during class many times a day, due to the depth of my depression. It's important to note that my depression was mostly well-controlled by this point in time, outside of school. But being in that building, with my classmates and teachers, I would often have a panic attack, burst into tears, hyperventilate, and be sent to the nurse's office. If I couldn't get my crying under control, I would end up leaving school for the day, and feel that one day's burden had been lifted. I did become suicidal and resorted to cutting at this point in time, since I was so bad at coping with my pain. Moving on. I met Gus senior year. And for our last semester, I joined his group of "nerdy" friends for lunch every day. I was so glad to have a group of people that didn't reject me. I didn't really fit in, but it didn't matter. Anyway, I also began to stay with Gus during his study hall. That was a big deal, considering that I was allowed to leave school before eighth period, but he had an in-school study hall eighth period. And I often chose to hang out with Gus rather than leave the horrid institution early. We bonded closely. I could tell him everything, right from the start. I trusted him innately, and I craved our time together. Nonetheless, for a variety of reasons, we remained "just friends" for several years. We stayed in contact throughout college, and visited each other occasionally.
It was during Gus' senior year of college (which was my junior year, due to one year lost for surgery) that we began to spend more time together. I had been through several relationships during college, and his college relationship had come to an end. I began to spend every weekend with Gus. We were still "just friends", but our bond was becoming much closer. In April of that year (2006), we finally made the leap from friends to a couple. I continued to spend every weekend with him at Northwestern through the end of the school year. Unfortunately for me, Gus was accepted into the "Teach For America" program, and was placed in Philadelphia. So, after dating for just under two months, he moved away. I flew to Philadelphia eight times during that school year. Gus was so overworked that he was barely sleeping. He was also somewhat depressed at the time, although he may not admit that now. This was quite a strain on our relationship. We would have a wonderful weekend together each month, and we would talk before bed every night. But I no longer had someone who was available to listen to all of my stories. I felt alone so much of the time. Gus' year in Philadelphia was followed by a challenging summer, when he moved back home. Due to Gus' fervent belief in our relationship, we made it through, and our bond strengthened again.
The next year of our relationship wasn't easy. We were living in the same state again, but Gus was back to living with his parents, after five years of independence. And of course, I was living at home, having graduated from college in spring 2007, but not able to move out of my parents' house. This year was difficult for us in several ways. First, my parents were going through a divorce. My house was miserable that year. And Gus' parents' house didn't provide much of an escape. I was really happy that Gus was home with me, and felt happier than ever to be with him. But Gus was stuck working at Starbucks for the year, while he applied for graduate schools. This year, even he will admit, he was definitely depressed (I know: mildly). I think I was able to help make the year more bearable for him, and he certainly helped me to handle my parents' divorce. I actually consider this year to be a wonderful year for us as a couple, since we got to spend almost every day together!
The next summer was a time of change. First, I had surgery to remove my gallbladder. Then, Gus had a long-awaited surgery to repair his torn ACL. This was followed by my trip to New York for tethered cord surgery on my lumbar spine. We supported each other as much as possible in our respective recoveries. Even though Gus was still in the early stages of his recovery, he accompanied me to New York. He was at my side before surgery, and every day following. This is when I learned that I could no longer become embarrassed in front of Gus. He stayed by my side through every painful and difficult part of the recovery process.
At the end of the summer (2008), Gus started graduate school at the University of Wisconsin: Milwaukee, working endlessly for his Ph.D. in clinical psychology. To shorten each of our commutes, we found an apartment between Milwaukee and Chicago. At this same time, my parents' divorce became final, and my mom moved into a condo. I wasn't sure how much time I would spend in each place, but I knew it would be a part-time living situation, with neither place really being my "home". Nonetheless, I am lucky enough to be able to stay with my mom during the weeks, while Gus is working obscenely long hours. And I get to stay with Gus on the weekends. What's amazing it how understanding Gus is every single weekend. At least one of our two weekend days, I am always restricted to bed. While I could be helping him around the house and making meals, he is usually the one helping me. I often feel guilty that I am always the one that needs caretaking. But he doesn't seem to mind. We both get frustrated with my illness. But he never seems to resent me for it. This may not be an ideal living situation, but I like to think that we make it work. This is the current situation, but everything is ready to change again, with more surgery somewhere in the future, and with Gus moving up to Milwaukee to allow him to get more than four hours' sleep in between his workdays.
Gustavo is probably the most hard-working, determined, and intelligent person I have ever met. I may call him a work-a-holic, often, but I truly admire his tenacity. I believe that he will accomplish everything he sets out to accomplish, and more. But of course, while I admire him so much for that, I love him for so many more reasons. I trust him so easily, in every sense. I know that in any situation, he will be on my side. I know that whatever struggles come up, he will encourage me the whole way. He is a wonderful shoulder to cry on and my favorite person to hug. He also believes in me so strongly. He thinks way too highly of me, and tells me that I am the strongest person he knows...even though he sees me in so many moments of pure weakness. He makes me feel better about myself by validating my feelings and my pain.
Another thing that I love is how similarly we think. We do not have the same taste in music, movies, television, food, or almost anything else. But I can talk to this man about everything. Our conversations are so easy, because we are often on the same mental track. Given our very different cultural backgrounds, I am sometimes surprised at how similar we've turned out to be.
And of course, I picture my future with Gustavo. This includes deeply wanting to have a family with him, although it may not work out the way we've always expected. Nontheless, family is so important to both of us. So, we both plan on finding a way to have a family together. I picture this future with no one else. And I cannot imagine how I would live a future without him in it.
We have been together for three years now, although it seems longer, considering the massive life changes we've been through together, and the many stages of our relationship. Also, we've been in each other's lives for seven and a half years, which certainly adds to that feeling. And just in case you were wondering, no, we are NOT engaged at this time! But we do have similar expectations for the future, so I try not to dwell on that fact, as we still have a few things to get through, including my next surgery.
I'm sorry if this was too sappy for anyone. Maybe, these words should remain between just the two of us, or be saved for some important occasion (hmmm...what could she be talking about?). But, as I mentioned earlier in the post, I feel a strong need to make sure that everyone in my life knows how important they are to me. And I think it's good for other people to hear about this key person in my life. He's an important part of who I am, an essential part of my life.
This is still just the beginning, since I do have so many people that mean so much to me.
If you actually read all of this, thanks! I understand that some people just want to hear about medical news and information, but I have other things inside of me that need to be said. I hope this isn't the inappropriate outlet for this purpose. I think that the loved ones in my life are more important than my illness, even though my illness invades almost every moment of my life.
Besides this, I finished reading my book today (The Invisible Man, by Ralph Ellison). I've decided that it truly is a literary masterpiece, even if the style isn't what I'm used to reading. So, I'm glad that I read it. Ever since my first surgery, I find concentration to be a challenge, and my speed of thinking seems to be slower. That makes reading a more difficult task than it used to be. It takes me much longer to finish a book than I ever expect it to. I used to race through books so quickly. This could be neurological, but it is probably also related to the constant pain I live in. Nonetheless, I can't stop reading. As long as my eyes don't hurt too badly, I always read before bed (which isn't always a great idea when you're on sedatives...you fall asleep with the flashlight on and lose your place).
So, I started a new book right away. For a big change of pace, I picked The Last Lecture, by Randy Pausch. I'm sure I'll get through this one quickly (for me). It's already really got me thinking...not necessarily about the essential content of the lecture (living out childhood dreams), but about how unimaginable it would be to me to lose my chosen life partner. I've been in love before, but this is the first time that I truly have my expectations for my future in place. The thought of a terminal illness afflicting my Gustavo, or any one of my other loved ones, is truly terrifying. Of course, chances are, this won't happen. But I want to make sure that everyone in my life knows how much they mean to me. I don't want to regret not expressing something that I feel. This is a huge undertaking, but I'm going to do my best.
Since I've already started, I'm going to try to explain just how important Gustavo is in my life. If you can't handle sappy, feel free to ignore the rest of this post (and no, you are not excused, Gus). Gus and I met during our senior year of high school. I really hated high school...and not just a little. Not the way a normal person hates school. By my senior year, I was bursting out into tears during class many times a day, due to the depth of my depression. It's important to note that my depression was mostly well-controlled by this point in time, outside of school. But being in that building, with my classmates and teachers, I would often have a panic attack, burst into tears, hyperventilate, and be sent to the nurse's office. If I couldn't get my crying under control, I would end up leaving school for the day, and feel that one day's burden had been lifted. I did become suicidal and resorted to cutting at this point in time, since I was so bad at coping with my pain. Moving on. I met Gus senior year. And for our last semester, I joined his group of "nerdy" friends for lunch every day. I was so glad to have a group of people that didn't reject me. I didn't really fit in, but it didn't matter. Anyway, I also began to stay with Gus during his study hall. That was a big deal, considering that I was allowed to leave school before eighth period, but he had an in-school study hall eighth period. And I often chose to hang out with Gus rather than leave the horrid institution early. We bonded closely. I could tell him everything, right from the start. I trusted him innately, and I craved our time together. Nonetheless, for a variety of reasons, we remained "just friends" for several years. We stayed in contact throughout college, and visited each other occasionally.
It was during Gus' senior year of college (which was my junior year, due to one year lost for surgery) that we began to spend more time together. I had been through several relationships during college, and his college relationship had come to an end. I began to spend every weekend with Gus. We were still "just friends", but our bond was becoming much closer. In April of that year (2006), we finally made the leap from friends to a couple. I continued to spend every weekend with him at Northwestern through the end of the school year. Unfortunately for me, Gus was accepted into the "Teach For America" program, and was placed in Philadelphia. So, after dating for just under two months, he moved away. I flew to Philadelphia eight times during that school year. Gus was so overworked that he was barely sleeping. He was also somewhat depressed at the time, although he may not admit that now. This was quite a strain on our relationship. We would have a wonderful weekend together each month, and we would talk before bed every night. But I no longer had someone who was available to listen to all of my stories. I felt alone so much of the time. Gus' year in Philadelphia was followed by a challenging summer, when he moved back home. Due to Gus' fervent belief in our relationship, we made it through, and our bond strengthened again.
The next year of our relationship wasn't easy. We were living in the same state again, but Gus was back to living with his parents, after five years of independence. And of course, I was living at home, having graduated from college in spring 2007, but not able to move out of my parents' house. This year was difficult for us in several ways. First, my parents were going through a divorce. My house was miserable that year. And Gus' parents' house didn't provide much of an escape. I was really happy that Gus was home with me, and felt happier than ever to be with him. But Gus was stuck working at Starbucks for the year, while he applied for graduate schools. This year, even he will admit, he was definitely depressed (I know: mildly). I think I was able to help make the year more bearable for him, and he certainly helped me to handle my parents' divorce. I actually consider this year to be a wonderful year for us as a couple, since we got to spend almost every day together!
The next summer was a time of change. First, I had surgery to remove my gallbladder. Then, Gus had a long-awaited surgery to repair his torn ACL. This was followed by my trip to New York for tethered cord surgery on my lumbar spine. We supported each other as much as possible in our respective recoveries. Even though Gus was still in the early stages of his recovery, he accompanied me to New York. He was at my side before surgery, and every day following. This is when I learned that I could no longer become embarrassed in front of Gus. He stayed by my side through every painful and difficult part of the recovery process.
At the end of the summer (2008), Gus started graduate school at the University of Wisconsin: Milwaukee, working endlessly for his Ph.D. in clinical psychology. To shorten each of our commutes, we found an apartment between Milwaukee and Chicago. At this same time, my parents' divorce became final, and my mom moved into a condo. I wasn't sure how much time I would spend in each place, but I knew it would be a part-time living situation, with neither place really being my "home". Nonetheless, I am lucky enough to be able to stay with my mom during the weeks, while Gus is working obscenely long hours. And I get to stay with Gus on the weekends. What's amazing it how understanding Gus is every single weekend. At least one of our two weekend days, I am always restricted to bed. While I could be helping him around the house and making meals, he is usually the one helping me. I often feel guilty that I am always the one that needs caretaking. But he doesn't seem to mind. We both get frustrated with my illness. But he never seems to resent me for it. This may not be an ideal living situation, but I like to think that we make it work. This is the current situation, but everything is ready to change again, with more surgery somewhere in the future, and with Gus moving up to Milwaukee to allow him to get more than four hours' sleep in between his workdays.
Gustavo is probably the most hard-working, determined, and intelligent person I have ever met. I may call him a work-a-holic, often, but I truly admire his tenacity. I believe that he will accomplish everything he sets out to accomplish, and more. But of course, while I admire him so much for that, I love him for so many more reasons. I trust him so easily, in every sense. I know that in any situation, he will be on my side. I know that whatever struggles come up, he will encourage me the whole way. He is a wonderful shoulder to cry on and my favorite person to hug. He also believes in me so strongly. He thinks way too highly of me, and tells me that I am the strongest person he knows...even though he sees me in so many moments of pure weakness. He makes me feel better about myself by validating my feelings and my pain.
Another thing that I love is how similarly we think. We do not have the same taste in music, movies, television, food, or almost anything else. But I can talk to this man about everything. Our conversations are so easy, because we are often on the same mental track. Given our very different cultural backgrounds, I am sometimes surprised at how similar we've turned out to be.
And of course, I picture my future with Gustavo. This includes deeply wanting to have a family with him, although it may not work out the way we've always expected. Nontheless, family is so important to both of us. So, we both plan on finding a way to have a family together. I picture this future with no one else. And I cannot imagine how I would live a future without him in it.
We have been together for three years now, although it seems longer, considering the massive life changes we've been through together, and the many stages of our relationship. Also, we've been in each other's lives for seven and a half years, which certainly adds to that feeling. And just in case you were wondering, no, we are NOT engaged at this time! But we do have similar expectations for the future, so I try not to dwell on that fact, as we still have a few things to get through, including my next surgery.
I'm sorry if this was too sappy for anyone. Maybe, these words should remain between just the two of us, or be saved for some important occasion (hmmm...what could she be talking about?). But, as I mentioned earlier in the post, I feel a strong need to make sure that everyone in my life knows how important they are to me. And I think it's good for other people to hear about this key person in my life. He's an important part of who I am, an essential part of my life.
This is still just the beginning, since I do have so many people that mean so much to me.
If you actually read all of this, thanks! I understand that some people just want to hear about medical news and information, but I have other things inside of me that need to be said. I hope this isn't the inappropriate outlet for this purpose. I think that the loved ones in my life are more important than my illness, even though my illness invades almost every moment of my life.
Tuesday, April 28, 2009
Expanding on the current state of things...
I had been hoping to be planning my wedding in 2010 (no, I'm not actually engaged yet! I just like to plan optimistically). Instead, it's looking more like planning my next surgery in 2010...and any other major life changes would have to be pushed back further. I lose so many years of my life to this illness. Anyway, I'm about 98% sure that TCI will not be satisfied with blood results alone. Even though, my vitamin D levels are within the normal range, my parathyroid levels have returned to normal range, my calcium output is improving, and the bone markers have improved. I just am under the impression that the DEXA scan showing improved bone density is all that matters when approving surgery. Even though Dr. Camacho feels that the DEXA scan is only a small part of the picture. She feels that my bones are on the right track and getting stronger...although it is way too soon for a DEXA scan to show this.
WHY did I have to go through so many months with endocrinologists wasting my time and refusing to treat me, while my bone density worsened??? So much time lost.
Anyway, assuming TCI does not approve surgery for this summer, I will probably not get a DEXA done until January of 2010, so it will have been a full year between scans. The insurance company will appreciate this (in fact, that's the only way they will cover it). Also, it's the only real chance of showing an improvement in bone density (hopefully).
If, for some strange reason, Dr. Camacho is able to convince TCI of the improvement of my bone situation without a dexa scan, then I will find out within the next couple weeks. I give this about a 2% chance of happening. BUT, if it does happen, I would be in for a big surprise, and have to reassess again!! Then, I would be in the position to have surgery this summer, which is of course what I want...but probably not without a consultation first.
I really have learned about so many people recently for whom fusion has failed, even using the updated positioning techniques. Their symptoms just don't go away. It seems like I would be guaranteed to get better, based on the amount of relief I can get from manual traction (simply lifting my head up, away from my spine) and from invasive traction. But I assume they only do this surgery if the patient experiences relief. So, how do I know if the surgery will actually help me? Reading of so many negative outcomes, which I only found out about by desperately searching for positive outcomes, has made me skeptical. I'm a bit discouraged about the whole surgery. So, I definitely plan on having a consultation with Dr. B before surgery, whenever that may be. I already have a long list of questions put together for him. I'll post that when it becomes important.
I really like to have some sort of a plan for my life. It's the only way I know how to live. In fact, it's how I've learned to cope with my generalized anxiety. And yet again, I've come to a time when the future is uncertain. That brings about large amounts of anxiety about the future, making it impossible for me to exist in the present.
So, at this point, I'm really looking forward to Dr. Camacho sending her report to TCI, to getting the results of my recent blood test, to sending all results to TCI, to TCI receiving the report, and then to hearing back from June about what this means for my future. So, until these things happen, all I can do is wait and wonder...not a happy place for me...especially as my pain persists and my autonomic nervous system fails.
WHY did I have to go through so many months with endocrinologists wasting my time and refusing to treat me, while my bone density worsened??? So much time lost.
Anyway, assuming TCI does not approve surgery for this summer, I will probably not get a DEXA done until January of 2010, so it will have been a full year between scans. The insurance company will appreciate this (in fact, that's the only way they will cover it). Also, it's the only real chance of showing an improvement in bone density (hopefully).
If, for some strange reason, Dr. Camacho is able to convince TCI of the improvement of my bone situation without a dexa scan, then I will find out within the next couple weeks. I give this about a 2% chance of happening. BUT, if it does happen, I would be in for a big surprise, and have to reassess again!! Then, I would be in the position to have surgery this summer, which is of course what I want...but probably not without a consultation first.
I really have learned about so many people recently for whom fusion has failed, even using the updated positioning techniques. Their symptoms just don't go away. It seems like I would be guaranteed to get better, based on the amount of relief I can get from manual traction (simply lifting my head up, away from my spine) and from invasive traction. But I assume they only do this surgery if the patient experiences relief. So, how do I know if the surgery will actually help me? Reading of so many negative outcomes, which I only found out about by desperately searching for positive outcomes, has made me skeptical. I'm a bit discouraged about the whole surgery. So, I definitely plan on having a consultation with Dr. B before surgery, whenever that may be. I already have a long list of questions put together for him. I'll post that when it becomes important.
I really like to have some sort of a plan for my life. It's the only way I know how to live. In fact, it's how I've learned to cope with my generalized anxiety. And yet again, I've come to a time when the future is uncertain. That brings about large amounts of anxiety about the future, making it impossible for me to exist in the present.
So, at this point, I'm really looking forward to Dr. Camacho sending her report to TCI, to getting the results of my recent blood test, to sending all results to TCI, to TCI receiving the report, and then to hearing back from June about what this means for my future. So, until these things happen, all I can do is wait and wonder...not a happy place for me...especially as my pain persists and my autonomic nervous system fails.
Last night's depression...and today's determination
Last night, when I couldn't sleep, and was in a completely angry and depressed mood, I wrote a diary entry (yes, with a pen and paper). I will include it here, out of personal necessity...followed by where I am after a good night's sleep.
Ever since June of 2008, things have kind of fallen into place, in a weird way. They at least have been planned out. I had Tethered Cord surgery. I had Invasive Cervical Traction, which promised a brighter future with fusion revision. I moved out of my childhood home, and into a condo with my mom and an apartment with my boyfriend (both part time). I kept persisting, kept working, no matter how hard it's been; taking as few days off as possible. I prepared for fusion surgery by seeking out treatment for osteopenia. I was diagnosed in May 2008, continuously sought treatment. I knew there would be some time to wait, so I planned in my head to have fusion surgery this summer, 2009. It's all that kept me going through the immense pain and neurological deterioration.
Now, I am going to a very dark place. I've learned of more and more people whose symptoms have not improved with all of the TCI treatments. Their pain and autonomic symptoms continue. Even though they've had a "perfect" fusion. Sometimes they improve for a month or two before their symptoms return. I'm having trouble finding anyone with the "trifecta" that has improved. I haven't found a single person that's found headache relief. The only success story I know of is a guy named Juan. He had minimal symptoms before surgery and got treatment within months. He did not have EDS or POTS, but he did have basilar invagination and a retroflexed odontoid. He saw Dr. Menezes in Iowa, who specializes in skull-base deformities. Dr. Menezes performs transoral odontoidectomy as part of the operation. This is not an option for me, and there's not really any reason to believe that any doctor other than TCI would be willing or able to help me any more than they can.
Worse, my bone density scan will not even be done until next fall, or maybe even next year. How do I even know if my bones are getting denser? How do I know if this conservative treatment is working? How will I be able to find out until I've already tried this course of treatment for a year.
It is a distinct possibility that I will have my next bone scan next year, and not see any improvement, since I haven't been taking a bisphosphonate. Only supplements.
My body fails me. Doctors fail me. I'm supposed to just wait - maybe they don't realize that I have to keep living this life while I wait. And all of this waiting - seven years since decompression. For what? To have another surgery, another very long and horrendously painful recovery? To walk through the fires of hell again, knowing that there may be no relief in the end.
When all of this is done, however sick I may be, I plan to get married and want to have a family. But will I ever be healthy enough to be a responsible mother? And how irresponsible would it be to pass my defective genes along? So many sick mothers with so many sick children. I've read the stories. Do I want to risk my child's life on unknown odds? Do I really want to have a child any other way? Does Gus? Could he possibly not resent me for my fatal flaw...not being able to become a mother? No. It is my curse to live with, my curse to accept over and over again. Expect less and less of myself and my life. Learn to be satisfied with less and less. Accept more pain, less joy, more time sick, less participation in life. Searching for a way, a reason to keep trying. The will is weak.
______________________________________________________
That was last night. Today, I'm pretty much back to myself. I push forward. I keep trying. I don't know if I have anything to look forward to. But I'm still going. I can't give up. It's not an option.
Ever since June of 2008, things have kind of fallen into place, in a weird way. They at least have been planned out. I had Tethered Cord surgery. I had Invasive Cervical Traction, which promised a brighter future with fusion revision. I moved out of my childhood home, and into a condo with my mom and an apartment with my boyfriend (both part time). I kept persisting, kept working, no matter how hard it's been; taking as few days off as possible. I prepared for fusion surgery by seeking out treatment for osteopenia. I was diagnosed in May 2008, continuously sought treatment. I knew there would be some time to wait, so I planned in my head to have fusion surgery this summer, 2009. It's all that kept me going through the immense pain and neurological deterioration.
Now, I am going to a very dark place. I've learned of more and more people whose symptoms have not improved with all of the TCI treatments. Their pain and autonomic symptoms continue. Even though they've had a "perfect" fusion. Sometimes they improve for a month or two before their symptoms return. I'm having trouble finding anyone with the "trifecta" that has improved. I haven't found a single person that's found headache relief. The only success story I know of is a guy named Juan. He had minimal symptoms before surgery and got treatment within months. He did not have EDS or POTS, but he did have basilar invagination and a retroflexed odontoid. He saw Dr. Menezes in Iowa, who specializes in skull-base deformities. Dr. Menezes performs transoral odontoidectomy as part of the operation. This is not an option for me, and there's not really any reason to believe that any doctor other than TCI would be willing or able to help me any more than they can.
Worse, my bone density scan will not even be done until next fall, or maybe even next year. How do I even know if my bones are getting denser? How do I know if this conservative treatment is working? How will I be able to find out until I've already tried this course of treatment for a year.
It is a distinct possibility that I will have my next bone scan next year, and not see any improvement, since I haven't been taking a bisphosphonate. Only supplements.
My body fails me. Doctors fail me. I'm supposed to just wait - maybe they don't realize that I have to keep living this life while I wait. And all of this waiting - seven years since decompression. For what? To have another surgery, another very long and horrendously painful recovery? To walk through the fires of hell again, knowing that there may be no relief in the end.
When all of this is done, however sick I may be, I plan to get married and want to have a family. But will I ever be healthy enough to be a responsible mother? And how irresponsible would it be to pass my defective genes along? So many sick mothers with so many sick children. I've read the stories. Do I want to risk my child's life on unknown odds? Do I really want to have a child any other way? Does Gus? Could he possibly not resent me for my fatal flaw...not being able to become a mother? No. It is my curse to live with, my curse to accept over and over again. Expect less and less of myself and my life. Learn to be satisfied with less and less. Accept more pain, less joy, more time sick, less participation in life. Searching for a way, a reason to keep trying. The will is weak.
______________________________________________________
That was last night. Today, I'm pretty much back to myself. I push forward. I keep trying. I don't know if I have anything to look forward to. But I'm still going. I can't give up. It's not an option.
Monday, April 27, 2009
Symptom Watch and Doctor Visit
Things have been a bit stressful for me.
One problem is that when I filled my weekly pill case yesterday, I somehow missed out on my Cymbalta. This means that by last night, and continuing into today, I've been suffering from withdrawal. I have been extra emotional. But worse than that, Cymbalta withdrawal often consists of "brain zaps" and vertigo.
http://en.wikipedia.or/wiki/SSRI_discontinuation_syndrome.
http://theblondepharmacist.wordpress.com/2007/11/17/brain-shivers-brain-zaps-brain-shocks/
So, once I figured out what had happened, I knew I had to plan a trip back to my boyfriend's house where I keep my regular meds today. Thank goodness I was able to take my Cymbalta, and the brain zaps stopped in the last hour.
Unfortunately, I've also had some severe POTS symptoms, where my heart feels like it stops over and over again...whenever I try to speak a whole sentence, or when I exhale and don't inhale soon enough. I'm still working on a better explanation for this symptom. It is quite disabling.
In addition, my temperature dysregulation has gotten significantly worse lately. I've been waking up every night soaked in sweat multiple times. However, I also tend to get the chills when I awake. I have been sweating way more than usual, and I often have goose bumps or chills at the same time. Very difficult to deal with, since I don't usually have the energy to shower every day. It seems that I'm going to have to try even harder, based on the amount of sweating.
Okay...onto the real news of the day. I had my appointment with Dr. Camacho, the head of the osteoporosis clinic at Loyola. This was to check on the state of my bones. I'm not sure what to say about this, so I'll just present the information I was given:
-Based on a blood test done in January (only one month into my vitamin D treatment), my blood levels of calcium, vitamin D, parathyroid hormone, and bone specific alkaline phosphatase have all improved remarkably (after only 3 weeks of treatment).
-A new DEXA scan is not advisable until after a full year of treatment. Improvement would not be expected any earlier, as bone growth takes time. If I choose to get an interim DEXA scan sometime this summer to check for progress, it would not be covered by insurance (about $2000 out-of-pocket).
-Dr. Camacho believes that the DEXA scan only reflects 17% of true bone strength. She believes the bone markers in the blood are a better reflection of fracture protection, and thus, bone strength.
My thoughts are as follows:
-The blood test she was referring to was done after only 3 weeks of vitamin D treatment. I really don't understand how I would have shown such improvement in this period of time.
-I do not have the actual numbers of my blood counts, but I have requested them from medical records at Loyola. I've also requested the results of the blood work I had done today.
-I had my hopes set on having my DEXA scan done immediately, so that I could be cleared for surgery in time for summer. However, it would be a horrible waste of money to have the scan done if it would be too soon to show improvement. I have no idea if I should try to get a DEXA scan done this summer. I scheduled one for August 28, but I have no idea if I should reschedule it for earlier, or wait until after I see Dr. Camacho again at the end of October.
-How can I truly know if my bones are getting stronger and we are on the right track with the vitamin D and calcium supplements, without a stronger medication like Boniva, Fosamax, Reclast, or Forteo? It seems that I would need a bone density scan to find out for sure. And I can't try this treatment for a full year before I know if it's working. Can I?
-Unfortunately, even though Dr. Camacho strongly believes that the bone markers in the blood are more reflective of bone strength, TCI trusts in the DEXA scan. They clear you for surgery based only on DEXA improvement of bone density.
In any case, Dr. Camacho has sent her thoughts...that my blood shows clear signs of improvement of the Vitamin D deficiency and the hyperparathyroidism. This should be proof enough that my bones are going in the right direction. But all I can do is wait to find out if this is enough for Dr. B. If not, I would have to wait and see if my next DEXA scan is better...but it is uncertain when this would be done.
I am utterly frustrated and quite let down by this whole ordeal. I guess I had my hopes up way too soon. I really was hoping that I'd be able to have my next and last surgery this summer. Clearly, I was a bit too optimistic. Now, my patience will continue to be pushed to the extreme, as I face much longer dealing with neurological progression of symptoms. I'm at a loss.
One problem is that when I filled my weekly pill case yesterday, I somehow missed out on my Cymbalta. This means that by last night, and continuing into today, I've been suffering from withdrawal. I have been extra emotional. But worse than that, Cymbalta withdrawal often consists of "brain zaps" and vertigo.
http://en.wikipedia.or/wiki/SSRI_discontinuation_syndrome.
http://theblondepharmacist.wordpress.com/2007/11/17/brain-shivers-brain-zaps-brain-shocks/
So, once I figured out what had happened, I knew I had to plan a trip back to my boyfriend's house where I keep my regular meds today. Thank goodness I was able to take my Cymbalta, and the brain zaps stopped in the last hour.
Unfortunately, I've also had some severe POTS symptoms, where my heart feels like it stops over and over again...whenever I try to speak a whole sentence, or when I exhale and don't inhale soon enough. I'm still working on a better explanation for this symptom. It is quite disabling.
In addition, my temperature dysregulation has gotten significantly worse lately. I've been waking up every night soaked in sweat multiple times. However, I also tend to get the chills when I awake. I have been sweating way more than usual, and I often have goose bumps or chills at the same time. Very difficult to deal with, since I don't usually have the energy to shower every day. It seems that I'm going to have to try even harder, based on the amount of sweating.
Okay...onto the real news of the day. I had my appointment with Dr. Camacho, the head of the osteoporosis clinic at Loyola. This was to check on the state of my bones. I'm not sure what to say about this, so I'll just present the information I was given:
-Based on a blood test done in January (only one month into my vitamin D treatment), my blood levels of calcium, vitamin D, parathyroid hormone, and bone specific alkaline phosphatase have all improved remarkably (after only 3 weeks of treatment).
-A new DEXA scan is not advisable until after a full year of treatment. Improvement would not be expected any earlier, as bone growth takes time. If I choose to get an interim DEXA scan sometime this summer to check for progress, it would not be covered by insurance (about $2000 out-of-pocket).
-Dr. Camacho believes that the DEXA scan only reflects 17% of true bone strength. She believes the bone markers in the blood are a better reflection of fracture protection, and thus, bone strength.
My thoughts are as follows:
-The blood test she was referring to was done after only 3 weeks of vitamin D treatment. I really don't understand how I would have shown such improvement in this period of time.
-I do not have the actual numbers of my blood counts, but I have requested them from medical records at Loyola. I've also requested the results of the blood work I had done today.
-I had my hopes set on having my DEXA scan done immediately, so that I could be cleared for surgery in time for summer. However, it would be a horrible waste of money to have the scan done if it would be too soon to show improvement. I have no idea if I should try to get a DEXA scan done this summer. I scheduled one for August 28, but I have no idea if I should reschedule it for earlier, or wait until after I see Dr. Camacho again at the end of October.
-How can I truly know if my bones are getting stronger and we are on the right track with the vitamin D and calcium supplements, without a stronger medication like Boniva, Fosamax, Reclast, or Forteo? It seems that I would need a bone density scan to find out for sure. And I can't try this treatment for a full year before I know if it's working. Can I?
-Unfortunately, even though Dr. Camacho strongly believes that the bone markers in the blood are more reflective of bone strength, TCI trusts in the DEXA scan. They clear you for surgery based only on DEXA improvement of bone density.
In any case, Dr. Camacho has sent her thoughts...that my blood shows clear signs of improvement of the Vitamin D deficiency and the hyperparathyroidism. This should be proof enough that my bones are going in the right direction. But all I can do is wait to find out if this is enough for Dr. B. If not, I would have to wait and see if my next DEXA scan is better...but it is uncertain when this would be done.
I am utterly frustrated and quite let down by this whole ordeal. I guess I had my hopes up way too soon. I really was hoping that I'd be able to have my next and last surgery this summer. Clearly, I was a bit too optimistic. Now, my patience will continue to be pushed to the extreme, as I face much longer dealing with neurological progression of symptoms. I'm at a loss.
Wednesday, April 22, 2009
Symptom Watch
Well, things have been pretty hard this week. I've had a lot of spinal pain. Perhaps the vertebra are becoming more hypermobile, causing excessive movement and arthritis pain. That's the only explanation I have currently. I've been spending a lot of time lying on a heating pad.
Then, when I woke up this morning, I found myself in a horrible position, with my head craned to the right side and no longer on the pillow. Since then, I've had horrible pain and muscle spasms in my left shoulderblade region. The pain is intense and radiating down my left arm. I did have massage therapy today. She said that I was a mess. The massage helped a little, but clearly not enough, as I had to cancel all work today. I'm back to being stuck on the couch, trying to get the right neck support. I also developed a mess of autonomic symptoms. My body temperature has been crazy. I woke up soaked in sweat, but then got the chills. I've been overheated some of the day, and quite cold at other times. I've also had nausea, heart palpitations, and shortness of breath.
So, I'm missing out on work and a family gathering, but getting the rest I need. Hopefully the pain meds will help. I just need to stop this crazy muscle spasm. I might have another massage soon, although I think I am limited on the number I can schedule each year, so I can't go as often as I'd like.
With all of this overheating, I really wish I could shower daily. Unfortunately, that hasn't been possible for a while now. It takes so much energy to bathe. And it feels awful not to.
That's all for today. I'll hope that tomorrow will be better.
I've also been keeping my aunt in my prayers, because she had to miss the family gathering tonight, too, as she has multiple chronic illnesses that she is battling. I hope that things can get easier for her soon. I wish that so many wonderful people didn't have to suffer.
Then, when I woke up this morning, I found myself in a horrible position, with my head craned to the right side and no longer on the pillow. Since then, I've had horrible pain and muscle spasms in my left shoulderblade region. The pain is intense and radiating down my left arm. I did have massage therapy today. She said that I was a mess. The massage helped a little, but clearly not enough, as I had to cancel all work today. I'm back to being stuck on the couch, trying to get the right neck support. I also developed a mess of autonomic symptoms. My body temperature has been crazy. I woke up soaked in sweat, but then got the chills. I've been overheated some of the day, and quite cold at other times. I've also had nausea, heart palpitations, and shortness of breath.
So, I'm missing out on work and a family gathering, but getting the rest I need. Hopefully the pain meds will help. I just need to stop this crazy muscle spasm. I might have another massage soon, although I think I am limited on the number I can schedule each year, so I can't go as often as I'd like.
With all of this overheating, I really wish I could shower daily. Unfortunately, that hasn't been possible for a while now. It takes so much energy to bathe. And it feels awful not to.
That's all for today. I'll hope that tomorrow will be better.
I've also been keeping my aunt in my prayers, because she had to miss the family gathering tonight, too, as she has multiple chronic illnesses that she is battling. I hope that things can get easier for her soon. I wish that so many wonderful people didn't have to suffer.
Sunday, April 19, 2009
My mom, through the years
In all the time I've written this blog, I've barely mentioned the person that has helped me through every challenge I've encountered in my life. My mom is not just a mother to me. She truly is my best friend, my confidant, and my seemingly tireless supporter.
I think it became clear that my mom and I would have a special relationship in adolescence. When many people begin pulling away from their mothers, I found that she was often the only person who seemed to understand what I was going through. I developed clinical depression in the beginning of middle school. I had difficulty figuring out just where I fit in the changing social scene. This caused me to develop severe social anxiety. The rejection by my peers, combined with crazy hormones and a distorted self image caused me to spiral downward into a deep depression. I spent much of my time miserable and crying. My mom had gone through similar problems in adolescence, so I knew that she could actually relate to my troubles. She seemed to have never-ending encouragement, even when I would cry to her night after night.
In high school, I started developing physical symptoms that were not easy to figure out. The most obvious one was a complicated breathing problem. It began as simple exercise-induced asthma. However, even with an inhaler, I often had trouble recovering from attacks. With daily gym class mandatory in the state of Illinois, this became a frequent problem for me. My first ambulance ride was the result of an asthma attack that wouldn't stop after running in freshman year gym class. Unfortunately, the lovely gym teachers refused to let me stop running, even in the midst of asthma attacks. They would just wait until I collapsed from lack of oxygen. It turned out that my asthma was not just asthma. After my breathing problems became more frequent, being triggered by almost anything, it was found out that I had a vocal cord dysfunction, causing my vocal cords to squeeze shut, blocking my trachea. It was worsened by what I now know were frequent panic attacks. But at the time, there was very little I could do to treat this problem.
Besides breathing, I developed other vague physical symptoms. The main thing is that I just felt bad, all of the time. I was constantly fatigued, had frequent stomachaches, and ached all over. There was nothing to do about these symptoms, either. All along, my mom was still my biggest supporter. As I got older, I began to realize just how similar we really are. My mom was not just someone I would go to when I was distraught, she was someone I wanted to do things with and spend time with. As much time as she spent crying with me, I'm just sure we've spent more time laughing. We go shopping together, go to movies, go out to eat, bake, and we make music together. We've always done these things. Many of my favorite times in life have been when it was just my mom and me.
I had other assorted health problems, like recurring tonsillitis and mononucleosis that never seemed to go away. But the spring of my senior year, I got my chiari diagnosis. Life has not been the same since. I made it through my decompression surgery that summer quite well. I went to college at the same school my mom went to. But I started developing worsening symptoms the first week of school. And they just kept getting worse. I was in a wheelchair by January of that year due to frequent falls and drop attacks. The doctors diagnosed me with POTS, but they also told me that I had "health anxiety". They thought I was creating a lot of my symptoms in my head. This was the time that I most needed an advocate. My older brother, Chris, was a strong advocate. He believed that my symptoms were real and serious. My mom also believed me, and she helped me make my appointment at The Chiari Institute.
My mom and I went to New York together for the first time in the fall of 2003, a year after my symptoms began worsening. I was in bad shape by then. I had to drop out of my real college, and I attended a community college part time. I was barely getting by. I had my cranio-cervical fusion that year. The pain that followed that surgery was like nothing I'd experienced before. I was restricted to bed most of the time for the next 9 months. Psychologically, I was in a dark place. But my mom was always there. It was a horribly depressing situation. And she never gave up on me. I went back to school in the fall, but struggled with symptoms, and began using an electric wheelchair. As time went by, it seemed clear that I was not getting any better. I began to lose hope.
But my mom never did. She's always done things to show me that my life is worthwhile, no matter what my level of disability. She accompanies me on every medical trip to Ohio and New York to see the specialists. We've made each of these trips fun in some way. She stays at my bedside through every surgery and hospital visit. At home, she brings me movies to watch in bed, she sits with me in the darkness, and of course, she holds me when I cry. When I get frustrated, angry, discouraged, or hopeless, she stays with me. She encourages me.
My mom has taught me how to not give up, even when life looks bleak. She has helped by always validating my feelings and listening to my darkest thoughts and fears. She never just told me to stop feeling the way I felt. She instead helped me through the hard times, and told me that better times were ahead. And she was always right. Every time things have gotten so bad that I've wanted to give up, something would eventually change. No rut lasts forever.
My symptoms have continued, as have my times of sadness. But my mom has somehow managed to always be there for me...always! Now that I am an adult, I appreciate even more the closeness I have with my mom. I still live with her much of the time, and she takes care of me whenever needed. I wish I could be more independent, but I'm so grateful that she's there when I can't. We get to spend a lot of time together. I don't know how she doesn't get sick of me. She still helps me through the dark times. She's been with me through so many medical problems that I don't know how to be embarrassed in front of her. But more than all of this, she is my best friend. We have fun together. We talk about life. We laugh. I know that I am so lucky to have her as my mom. To me, she is Superwoman. She can do anything. She works so hard, and she still has time to care deeply about those close to her. No matter what is going on in her life, if something is wrong with someone she loves, she puts her problems aside and is fully there for them. I hope to be more like her. She amazes me, and I am so grateful that I got her as a mom.
Symptom Watch
Today has been mostly a day of rest. I have had a terrible pain in the mid-thoracic region of my spine, between my shoulder blades. It hurts when I inhale. I've had pain in this area before. I can only assume it's an area where a vertebra is not as stable as it should be due to EDS, causing arthritis-like pain. It has been a very debilitating pain today, too. Then, when I saved up all my energy to make dinner, I was too nauseated to actually eat it. Great. Also, I've had to take the strong pain meds today, which has made me really itchy.
So, that's pretty much my day. I got through another 100 pages in The Invisible Man, which is still a bit of a challenge to get through. I don't mind the content, but the style is strange, as well as the seemingly disjointed plot. (Again, no one should actually take my literary criticisms seriously. What do I know?)
Anyway, things are going okay. I'm in traction right now, hoping to reduce the nausea a bit. So much for eating real meals. And unfortunately, I'm unable to help clean up after dinner or do the dishes, due to the overwhelming sick feeling I have right now, and the pain coming back as the meds wear off. So, Gus is left to do the dishes alone, again. It's hard to get over the guilt of not being able to contribute to the housework at all. I'm not a good roommate, to say the least.
It's getting to be the time of year for another piano recital for my students. That means I have to pick a date, which is always difficult, since I don't want anyone to be left out due to scheduling conflicts. That also means that I should start to choose and prepare a piece to perform, since I like to do that each recital. It gives me something fun to think about, since I actually do like playing the piano, even though I don't do it too much anymore.
So, that's pretty much my day. I got through another 100 pages in The Invisible Man, which is still a bit of a challenge to get through. I don't mind the content, but the style is strange, as well as the seemingly disjointed plot. (Again, no one should actually take my literary criticisms seriously. What do I know?)
Anyway, things are going okay. I'm in traction right now, hoping to reduce the nausea a bit. So much for eating real meals. And unfortunately, I'm unable to help clean up after dinner or do the dishes, due to the overwhelming sick feeling I have right now, and the pain coming back as the meds wear off. So, Gus is left to do the dishes alone, again. It's hard to get over the guilt of not being able to contribute to the housework at all. I'm not a good roommate, to say the least.
It's getting to be the time of year for another piano recital for my students. That means I have to pick a date, which is always difficult, since I don't want anyone to be left out due to scheduling conflicts. That also means that I should start to choose and prepare a piece to perform, since I like to do that each recital. It gives me something fun to think about, since I actually do like playing the piano, even though I don't do it too much anymore.
Saturday, April 18, 2009
Enjoying the Weekend
Today was pretty much a normal Saturday. My Provigil made me a little too restless (not actually productive, just restless). So around 4:00, Gus picked me up and carried me to bed, forcing me to give myself a break. I then realized just how much I needed the rest, because my body felt so terrible. I gave in to reading my book for 2 1/2 hours. At that point, I got up and ate some frozen pizza that Gus had thrown in the oven for me. Then, we watched the movie Doubt, which was very good. Followed that up with a bath for Buttons! It was difficult, as I already had some pretty bad spinal pain, but still fun. She then ran around the house like crazy for about 20 minutes. Now, we're both crashing, while Gus is working on more homework. Overall, a pretty good day.
Hopefully, tomorrow I'll be able to cook a meal that will last the week, which is always my main goal for Sundays. I like to be able to leave a bunch of leftover food in the fridge so Gus has food to eat during the week. He gets home too late to cook anything on a weekday. It's nice if I can do that one thing for him.
I did not sleep well last night (woke up often and slept very lightly...I even read a chapter in my book around 3 am). So, hopefully, tonight will be better. Unfortunately, there is absolutely nothing to do tomorrow. We don't even have any DVD's from Netflix that we haven't seen right now, so it will probably be another day of reading while Gus does work. By the way, the book I'm reading right now is The Invisible Man, by Ralph Ellison. This is a book from Gus' bookshelf that he thought I would enjoy. I'm struggling to get through it, but I'm past the halfway point now, so there's no turning back. I'm not saying that racism in the mid-20th century isn't interesting, but the style is confusing and often boring. (Please don't take this as educated literary criticism. I understand that many consider this to be the best piece of 20th century literature.) Normally, I choose my own reading materials, so I know that I'm interested in the subject matter. I'm very relieved to be done with school and not have to analyze everything to death. I also like that I can finally just "enjoy" reading, now. I read a lot of books by Jodi Picoult...I've read almost every one. I also choose books somewhat randomly...often I buy what's on sale at Target. It might seem ridiculous, but it works pretty well for me.
I'm very excited that my Aunt Carole is coming in for a visit this week. It will be great to spend some time with her.
Also, this week, Gus and I will have our 3-year anniversary. We've known each other for 7 1/2 years. We've been close friends since senior year of high school. But it wasn't until three years ago that we finally got it right. It has been a bumpy road, with our first year being spent in different parts of the country. We've had some challenges, but I am proud to say that we are stronger now than ever. If I can just get this surgery out of the way and start recuperating, we can really start looking at our future together more seriously.
Hopefully, tomorrow I'll be able to cook a meal that will last the week, which is always my main goal for Sundays. I like to be able to leave a bunch of leftover food in the fridge so Gus has food to eat during the week. He gets home too late to cook anything on a weekday. It's nice if I can do that one thing for him.
I did not sleep well last night (woke up often and slept very lightly...I even read a chapter in my book around 3 am). So, hopefully, tonight will be better. Unfortunately, there is absolutely nothing to do tomorrow. We don't even have any DVD's from Netflix that we haven't seen right now, so it will probably be another day of reading while Gus does work. By the way, the book I'm reading right now is The Invisible Man, by Ralph Ellison. This is a book from Gus' bookshelf that he thought I would enjoy. I'm struggling to get through it, but I'm past the halfway point now, so there's no turning back. I'm not saying that racism in the mid-20th century isn't interesting, but the style is confusing and often boring. (Please don't take this as educated literary criticism. I understand that many consider this to be the best piece of 20th century literature.) Normally, I choose my own reading materials, so I know that I'm interested in the subject matter. I'm very relieved to be done with school and not have to analyze everything to death. I also like that I can finally just "enjoy" reading, now. I read a lot of books by Jodi Picoult...I've read almost every one. I also choose books somewhat randomly...often I buy what's on sale at Target. It might seem ridiculous, but it works pretty well for me.
I'm very excited that my Aunt Carole is coming in for a visit this week. It will be great to spend some time with her.
Also, this week, Gus and I will have our 3-year anniversary. We've known each other for 7 1/2 years. We've been close friends since senior year of high school. But it wasn't until three years ago that we finally got it right. It has been a bumpy road, with our first year being spent in different parts of the country. We've had some challenges, but I am proud to say that we are stronger now than ever. If I can just get this surgery out of the way and start recuperating, we can really start looking at our future together more seriously.
Thursday, April 16, 2009
Positivity and Optimism vs. Depression and Reality
So, this may not be a very popular post, but I feel the need to vent on this particular issue. Most people these days seem to believe in the "power of positive thinking". I am not saying that they have no basis. I believe that having an overall negative view on life makes life harder to live. However, for a lot of my lifetime, I have suffered from major depressive disorder. I've been treated since age 13. Mostly, my medication is very helpful, but I've had bouts of suicidality throughout adolescence and early adulthood.
At this point in my life, I feel that I am no longer a depressed person, but I still definitely have days or weeks or longer periods of time where I feel very depressed about my situation. And guess what? That is normal, especially with chronic pain and chronic illnesses. It is actually okay to spend one day really crying about my situation, especially if I can wake up the next day, and return to this place of acceptance. SADNESS IS OKAY!!! I know it is. It's normal and it's part of accepting illness as my reality. If I couldn't accept some sadness in my life, I wouldn't still be here. I feel that I've come to a more realistic view on my life. I don't have really high hopes and unrealistic expectations. I don't expect myself to be happy every day. I even think that it is okay to feel discouraged at times. As long as I don't dwell in this feeling for too long, it is okay to temporarily lose hope.
I think that resilience is much more important than optimism. I do not always have a positive view of my situation. I am not happy to be sick. I am not happy to lose half the years of my life to illness. THAT'S OKAY. As long as I don't feel completely hopeless, I will always be okay. As long as I know that I have a few people that will always be there for me, I will be okay. As long as there is the possibility of a light at the end of this very long tunnel, I can keep pushing through the darkness.
That is why, when I was told there were no more surgical options or possible treatments in the year 2005, I went to a very dark place. I did become suicidal, because I didn't have a reason to hope. All I need is a reason to have hope. And this upcoming surgery, whenever it may be, is my reason to hope. Knowing that I'm not alone in this struggle is my reason to hope. My future life with Gustavo and surrounded by family is my reason to hope.
So, I may not be optimistic all the time. I am certainly not Miss Sunshine full of positivity all the time (even though that may be the image I try to project). Those that are closest to me know that I have times of negativity every day of my life...some more than others. I believe it is better for the people who care about me if I try to keep the negativity to myself sometimes. But other times, I need to be able to vent my frustrations and fears and grief. Thankfully, I have people that are willing to listen.
A grieving process really does take place with chronic illness. And it actually needs to cycle around and repeat itself at times, when further acceptance is needed.
So, all I ask is that you not demand consistent positivity from me. I have days of depression. I have a realistic understanding of my circumstances. And I have guarded hope that they may improve in the future. Realism is the only way that I can survive this...not positivity.
At this point in my life, I feel that I am no longer a depressed person, but I still definitely have days or weeks or longer periods of time where I feel very depressed about my situation. And guess what? That is normal, especially with chronic pain and chronic illnesses. It is actually okay to spend one day really crying about my situation, especially if I can wake up the next day, and return to this place of acceptance. SADNESS IS OKAY!!! I know it is. It's normal and it's part of accepting illness as my reality. If I couldn't accept some sadness in my life, I wouldn't still be here. I feel that I've come to a more realistic view on my life. I don't have really high hopes and unrealistic expectations. I don't expect myself to be happy every day. I even think that it is okay to feel discouraged at times. As long as I don't dwell in this feeling for too long, it is okay to temporarily lose hope.
I think that resilience is much more important than optimism. I do not always have a positive view of my situation. I am not happy to be sick. I am not happy to lose half the years of my life to illness. THAT'S OKAY. As long as I don't feel completely hopeless, I will always be okay. As long as I know that I have a few people that will always be there for me, I will be okay. As long as there is the possibility of a light at the end of this very long tunnel, I can keep pushing through the darkness.
That is why, when I was told there were no more surgical options or possible treatments in the year 2005, I went to a very dark place. I did become suicidal, because I didn't have a reason to hope. All I need is a reason to have hope. And this upcoming surgery, whenever it may be, is my reason to hope. Knowing that I'm not alone in this struggle is my reason to hope. My future life with Gustavo and surrounded by family is my reason to hope.
So, I may not be optimistic all the time. I am certainly not Miss Sunshine full of positivity all the time (even though that may be the image I try to project). Those that are closest to me know that I have times of negativity every day of my life...some more than others. I believe it is better for the people who care about me if I try to keep the negativity to myself sometimes. But other times, I need to be able to vent my frustrations and fears and grief. Thankfully, I have people that are willing to listen.
A grieving process really does take place with chronic illness. And it actually needs to cycle around and repeat itself at times, when further acceptance is needed.
So, all I ask is that you not demand consistent positivity from me. I have days of depression. I have a realistic understanding of my circumstances. And I have guarded hope that they may improve in the future. Realism is the only way that I can survive this...not positivity.
The Questions
I often face the dilemma of how to answer two very common questions: "How are you?" and "What happened?"
People that already know that I am "sick" in some way will often ask the question, "How are you?" It is always a difficult one to answer. If they only want a short answer, I simply say, "okay", whether I'm on the verge of physical and emotional break-down or not. But often, people really want to know how I'm doing. If I don't see someone very often, a common response for me right now is, "Just waiting for surgery. Hoping it will be soon." If it's someone I see on a regular basis, I have to try to buffer the truth in some way. No one wants to hear me say, "I'm in so much pain...I don't think I can handle this anymore...I want to cry...I just stopped crying...My heart is racing...The room is spinning...I can't catch my breath." So I never give that answer. I'm more likely to reply, "It's a struggle, but I'm staying strong." People really like to hear optimism. Somehow, it makes them feel better if they think that I have a positive attitude.
When you walk around in a rigid neck brace, and use a wheelchair part-time, you often get the question "What happened?" Most people automatically assume that I've been in a car accident. And most people, even strangers, frequently, ask what's wrong. However, they do not really want the answer to that question. There is no easy answer, since there are multiple diagnoses, and no one has heard of them. I can't simply say, "I have MS" or "I have lupus" or (fill in the blank with other more familiar disorders). Even though people don't necessarily understand these conditions, they have heard of them, and they take them seriously. So, I find myself making up the strangest answers. I often say "I had surgery on my neck and skull," but sometimes people will ask how long ago, so that's a bad answer. Maybe just "I have a complex spinal/neurological condition," is a better way to go. Then, there's the people who are really curious, and they want an actual medical explanation. That's hard, too, because I don't know which illness to pick or how to describe it all in a succinct fashion.
So, I'll keep working on how to answer these questions. I've seriously considered printing up a small informational brochure briefly describing each of my conditions for people. I'm just not sure how they would react. It seems like a simple solution for me, but I suppose others might not agree.
People that already know that I am "sick" in some way will often ask the question, "How are you?" It is always a difficult one to answer. If they only want a short answer, I simply say, "okay", whether I'm on the verge of physical and emotional break-down or not. But often, people really want to know how I'm doing. If I don't see someone very often, a common response for me right now is, "Just waiting for surgery. Hoping it will be soon." If it's someone I see on a regular basis, I have to try to buffer the truth in some way. No one wants to hear me say, "I'm in so much pain...I don't think I can handle this anymore...I want to cry...I just stopped crying...My heart is racing...The room is spinning...I can't catch my breath." So I never give that answer. I'm more likely to reply, "It's a struggle, but I'm staying strong." People really like to hear optimism. Somehow, it makes them feel better if they think that I have a positive attitude.
When you walk around in a rigid neck brace, and use a wheelchair part-time, you often get the question "What happened?" Most people automatically assume that I've been in a car accident. And most people, even strangers, frequently, ask what's wrong. However, they do not really want the answer to that question. There is no easy answer, since there are multiple diagnoses, and no one has heard of them. I can't simply say, "I have MS" or "I have lupus" or (fill in the blank with other more familiar disorders). Even though people don't necessarily understand these conditions, they have heard of them, and they take them seriously. So, I find myself making up the strangest answers. I often say "I had surgery on my neck and skull," but sometimes people will ask how long ago, so that's a bad answer. Maybe just "I have a complex spinal/neurological condition," is a better way to go. Then, there's the people who are really curious, and they want an actual medical explanation. That's hard, too, because I don't know which illness to pick or how to describe it all in a succinct fashion.
So, I'll keep working on how to answer these questions. I've seriously considered printing up a small informational brochure briefly describing each of my conditions for people. I'm just not sure how they would react. It seems like a simple solution for me, but I suppose others might not agree.
Good Days and Bad Days...what this means to me
So, I often say that I have "good days and bad days" when describing my condition lately. However, that phrase can mean different things at different stages of illness. So, I figure I can do my best to describe a day for me, and what makes it good or bad.
I work Monday through Thursday. I work for 2-3 hours in the late afternoon each day. So for now, I'll describe a work-day. I wake up around 10:30 am (yes I require a lot of sleep, and I have adapted my lifestyle to accommodate that need). I can usually get myself breakfast, and then take my handful of morning pills. Without any one of these many morning meds, the whole day would be lost. Then, I rest. This means that I recline on the daybed, and go on my laptop or watch last night's TV (I refuse to watch daytime television, even if I am stuck in bed). The next thing that happens is lunch, which I try to eat around 1:30. I'm never very hungry, but I need the food, water, and my next dose of pills. So at lunchtime, I usually have more of a healthy snack than a meal. Lunch is followed by more rest. By the way, this rest is often not very restful. I have a terrible time trying to get comfortable with my heavy head weighing me down. I often use traction of some kind before work. This "rest" time is also often accompanied by lethargy, weakness, terrible headaches, full-body muscle aches, severe nausea, and an overall sick feeling. Some days, I need to take a bath before work (it would be every day, but I don't have the strength every day. That means, I will need a second Provigil, just to have the energy to get myself going. Sometimes, I need to take a strong pain medication, too. Usually, I get dressed in a rush in the minutes before I have to leave the house. I wait until the last minute, because then I have gotten as much rest as possible. If possible, I drive myself to work. Some days, I get a ride. Other days I cancel. It all depends on the severity of symptoms in the half-hour before work. When I go to work, I struggle to look normal and hide my pain with a smile. It is an incredible challenge of will-power on most days to make it through all of my lessons. Most days, after work, I pick up a sub at Subway on the way home. Then, I crash on the daybed, feeling like I've been run over by a truck. And that's on a good day. I don't get off the couch unless absolutely necessary. I usually need traction again. I "rest" until it's time to go to bed, which is usually around 11:00.
When it's a bad day, I cancel my lessons. Occasionally, this is due to being a complete emotional wreck. But usually, I have a high degree of pain or overall sick feeling that can only be remedied by staying horizontal and hoping to get some recuperative sleep. Often, I have a bad day when the night before was restless due to severe head pain.
The weekend days really vary. Unfortunately, when I don't have anything scheduled, I often find that my body is even more likely to shut down. Many Saturdays, I never get out of bed. Some weekends, I never even change out of my pajamas from Friday to Monday. I just lay around in agony.
I figure this might help people understand my life a little better than a generic list of symptoms. This is how I live. This is why I keep trying new surgeries and travel across the country to be tortured...because I cannot live my whole life like this. I expect more from myself. I'm 25 now, but I hope to get married and even have a child one day (although the possibility of passing my genes on is looking like a bad idea). I hope to get more out of life and have more to offer the world. I know I have more to give. I just need my body to be fixed so that I can do it.
I work Monday through Thursday. I work for 2-3 hours in the late afternoon each day. So for now, I'll describe a work-day. I wake up around 10:30 am (yes I require a lot of sleep, and I have adapted my lifestyle to accommodate that need). I can usually get myself breakfast, and then take my handful of morning pills. Without any one of these many morning meds, the whole day would be lost. Then, I rest. This means that I recline on the daybed, and go on my laptop or watch last night's TV (I refuse to watch daytime television, even if I am stuck in bed). The next thing that happens is lunch, which I try to eat around 1:30. I'm never very hungry, but I need the food, water, and my next dose of pills. So at lunchtime, I usually have more of a healthy snack than a meal. Lunch is followed by more rest. By the way, this rest is often not very restful. I have a terrible time trying to get comfortable with my heavy head weighing me down. I often use traction of some kind before work. This "rest" time is also often accompanied by lethargy, weakness, terrible headaches, full-body muscle aches, severe nausea, and an overall sick feeling. Some days, I need to take a bath before work (it would be every day, but I don't have the strength every day. That means, I will need a second Provigil, just to have the energy to get myself going. Sometimes, I need to take a strong pain medication, too. Usually, I get dressed in a rush in the minutes before I have to leave the house. I wait until the last minute, because then I have gotten as much rest as possible. If possible, I drive myself to work. Some days, I get a ride. Other days I cancel. It all depends on the severity of symptoms in the half-hour before work. When I go to work, I struggle to look normal and hide my pain with a smile. It is an incredible challenge of will-power on most days to make it through all of my lessons. Most days, after work, I pick up a sub at Subway on the way home. Then, I crash on the daybed, feeling like I've been run over by a truck. And that's on a good day. I don't get off the couch unless absolutely necessary. I usually need traction again. I "rest" until it's time to go to bed, which is usually around 11:00.
When it's a bad day, I cancel my lessons. Occasionally, this is due to being a complete emotional wreck. But usually, I have a high degree of pain or overall sick feeling that can only be remedied by staying horizontal and hoping to get some recuperative sleep. Often, I have a bad day when the night before was restless due to severe head pain.
The weekend days really vary. Unfortunately, when I don't have anything scheduled, I often find that my body is even more likely to shut down. Many Saturdays, I never get out of bed. Some weekends, I never even change out of my pajamas from Friday to Monday. I just lay around in agony.
I figure this might help people understand my life a little better than a generic list of symptoms. This is how I live. This is why I keep trying new surgeries and travel across the country to be tortured...because I cannot live my whole life like this. I expect more from myself. I'm 25 now, but I hope to get married and even have a child one day (although the possibility of passing my genes on is looking like a bad idea). I hope to get more out of life and have more to offer the world. I know I have more to give. I just need my body to be fixed so that I can do it.
Hmmm....
Well, I've had a pretty good couple of days (relatively speaking, of course). I still have times of bad nausea that makes me want to do nothing but lie down. It also messes up my appetite. I feel like I have to force-feed myself sometimes...especially for my mid-day meal. I've been really limited in what foods I can handle. However, with the help of Provigil, I have the energy and motivation to go to work and get through my day most of the time. One of these days, though, I'm just going to want a nap.
Today, I went to the dentist (always a challenge), and I finally got bonding done on my two tiny teeth, making them more even. I've been wearing retainers for 3 years preparing for this, so it's pretty exciting. It took a little over an hour, which made my left arm go totally numb and my head practically explode (dental work is really hard on a chiari head, weak neck, and EDS gums). But in the end, I'm really happy with the result. This was a cosmetic, not medical procedure. I feel good about the result, even if some people don't think it was needed.
Also, I'm getting so nervous for my next bone scan. I've talked to a few people for whom the Vitamin D/calcium treatment has not helped at all. It is thought that this may be due to EDS causing absorption issues. One woman is on four times the amount of Vitamin D that I'm taking, and she still has poor bone density and now a broken hip. So I'm just really scared that my bones will not be ready for surgery. I don't know how much longer I can be patient for this surgery.
It's officially seven years since my diagnosis. Of course, my symptoms developed in the years before diagnosis, starting with puberty, and worsening with minor traumas along the way. But seven years ago, I was a senior in high school (2002) and was told that I would need brain surgery. Ever since then, my life went downhill. Nothing has been what I thought it would be. My first surgery was so scary, but it went well. I believe I had complete relief from my headache for about one month after the surgery. That is the only time I can remember feeling so lightweight and free since early childhood. After that, I went off to college, and started getting worse right away. And then I just kept getting worse. I struggled through school, was diagnosed with POTS, and finally went to visit The Chiari Institute. They did my cranio-cervical fusion in 2003, which I never really recovered from. I finished school and started working, but I still needed to spend the majority of my time resting. The vast majority of my time was absolutely miserable, and some of it was completely agonizing. Finally, I went back the to The Chiari Institute in 2008, and they did my tethered cord surgery. It seems that I needed that surgery to prevent a worsening of lower-body symptoms, but it did nothing to improve my overall health. But they did find out that my skull was settling again. So now, I continue to wait, for who knows how long. It would be really ideal to have my fusion revision at the beginning of this summer. That's been my plan since last June. And I've been trying to get treatment for osteopenia since then. However, it took 8 months for me to find any endocrinologist willing to treat me. Once I finally found one, she was not willing to start me on actual medication, only vitamins and supplements. So I have no idea when I can have this next (and hopefully last) surgery.
Until surgery, my condition can only deteriorate. Nothing can get better without further skull extraction. So all I can do is wait and hope, and try to keep living my life. I just don't know how to keep waiting. How can I keep being patient, when I've been waiting for so long...so so long? It just hurts so much to know that life is passing me by, and I'm not really there to enjoy it most of the time. I'm 25 now, and I feel like I've missed out on most of life since high school. Actually, I missed out on a lot during high school too. I missed school a lot, and spent a lot of time seeking treatment for an unknown condition. Now, I'm usually curled up on the couch or in bed...drugged up or completely out of it. I can put on a fake smile when I need to, and pretend that my body is not failing me...pretend that I live a normal life. But nothing about the way I live is normal anymore... More on this later.
Today, I went to the dentist (always a challenge), and I finally got bonding done on my two tiny teeth, making them more even. I've been wearing retainers for 3 years preparing for this, so it's pretty exciting. It took a little over an hour, which made my left arm go totally numb and my head practically explode (dental work is really hard on a chiari head, weak neck, and EDS gums). But in the end, I'm really happy with the result. This was a cosmetic, not medical procedure. I feel good about the result, even if some people don't think it was needed.
Also, I'm getting so nervous for my next bone scan. I've talked to a few people for whom the Vitamin D/calcium treatment has not helped at all. It is thought that this may be due to EDS causing absorption issues. One woman is on four times the amount of Vitamin D that I'm taking, and she still has poor bone density and now a broken hip. So I'm just really scared that my bones will not be ready for surgery. I don't know how much longer I can be patient for this surgery.
It's officially seven years since my diagnosis. Of course, my symptoms developed in the years before diagnosis, starting with puberty, and worsening with minor traumas along the way. But seven years ago, I was a senior in high school (2002) and was told that I would need brain surgery. Ever since then, my life went downhill. Nothing has been what I thought it would be. My first surgery was so scary, but it went well. I believe I had complete relief from my headache for about one month after the surgery. That is the only time I can remember feeling so lightweight and free since early childhood. After that, I went off to college, and started getting worse right away. And then I just kept getting worse. I struggled through school, was diagnosed with POTS, and finally went to visit The Chiari Institute. They did my cranio-cervical fusion in 2003, which I never really recovered from. I finished school and started working, but I still needed to spend the majority of my time resting. The vast majority of my time was absolutely miserable, and some of it was completely agonizing. Finally, I went back the to The Chiari Institute in 2008, and they did my tethered cord surgery. It seems that I needed that surgery to prevent a worsening of lower-body symptoms, but it did nothing to improve my overall health. But they did find out that my skull was settling again. So now, I continue to wait, for who knows how long. It would be really ideal to have my fusion revision at the beginning of this summer. That's been my plan since last June. And I've been trying to get treatment for osteopenia since then. However, it took 8 months for me to find any endocrinologist willing to treat me. Once I finally found one, she was not willing to start me on actual medication, only vitamins and supplements. So I have no idea when I can have this next (and hopefully last) surgery.
Until surgery, my condition can only deteriorate. Nothing can get better without further skull extraction. So all I can do is wait and hope, and try to keep living my life. I just don't know how to keep waiting. How can I keep being patient, when I've been waiting for so long...so so long? It just hurts so much to know that life is passing me by, and I'm not really there to enjoy it most of the time. I'm 25 now, and I feel like I've missed out on most of life since high school. Actually, I missed out on a lot during high school too. I missed school a lot, and spent a lot of time seeking treatment for an unknown condition. Now, I'm usually curled up on the couch or in bed...drugged up or completely out of it. I can put on a fake smile when I need to, and pretend that my body is not failing me...pretend that I live a normal life. But nothing about the way I live is normal anymore... More on this later.
Wednesday, April 15, 2009
Still waiting on the bone scan...
So much to catch up on!
Easter weekend was busy, but mostly good. Friday night, I went to the Good Friday service at Willow Creek, which was especially meaningful, since my uncle was the main "producer" of the service. I went with a lot of my family, which was really nice. I just had trouble sitting up for the whole service. My spine was uncomfortable and my head was throbbing.
Saturday, I had a mostly good day. Well, after 5:00 that is. I rested and dealt with nausea and headache pain until 5:00. Then, for some reason, I felt pretty good. Most of my symptoms improved and I had an enjoyable night. I didn't go out or anything, because I didn't want to risk feeling sick again.
Sunday, I had to skip Easter services, of course, because I don't get up out of bed until the afternoon...ever! I had three houses to visit for Easter, which proved to be a bit too much to handle. After the first house (which was my mom's), I went to Gus' parents' house and then to my Grandma Millie's house. By the third house, I was gone. My head felt like it was going to explode. I barely ate anything all day, even though I was surrounded by delicious food. Nausea was the main problem. And I'm still dealing with a little extra sensitivity in my GI tract, so I have to be careful what I eat. My headache was the main problem of the day. It built as the day went on, and all I could do was curl up on the couch at my grandma's house. I didn't eat anything or move around or talk very much.
That headache lasted overnight and into Monday. All day Monday, my fatigue and POTS were severe. I couldn't get up for anything. I had been experimenting with my Provigil dose, and I've learned that I cannot function without it! Thank goodness I have that medication to lift the weight of the fatigue.
Then, I had severe nausea that lasted all day Monday and Tuesday. I've been having a difficult time thinking of foods that sound palatable. I've just been so nauseated with very little appetite. And everything I try to eat just tastes bad. For example, for lunch yesterday, I had a couple saltines with peanut butter, 2 baby carrot sticks, one bite of banana bread, and a half an oatmeal cookie. It was all gross.
I have been losing weight, but not too much. Probably because I'm not moving around very much these days. And I still eat a Subway mini sub for dinner most nights of the week. I get turkey on wheat with lots of vegetables. That way, I know I'm not malnourished! I also have healthy cereal with Lactaid milk for breakfast every day, too.
So my body mass index is currently 18.5, which is the borderline between underweight and healthy weight. This means that I shouldn't lose any more weight, but I'm still doing okay! I just have to keep working on maintaining my muscle mass, which I'm trying to do with physical therapy. However, any amount of exercise has been increasing my headache lately...even when I'm just doing isometric holds while lying down!!!
All of this going on while I'm just waiting for my next doctor's appointment. That will be April 27th...less than 2 weeks away! I'll be seeing Dr. Camacho again, who is the head of the Osteoporosis Clinic at Loyola Hospital. She's the one who decided that I should try the megadose of vitamin D with calcium to increase my bone density. So I've been taking that for 4 months, and I really hope it's helping. When I see her, I will beg her to order a new DEXA scan, to find out if my bone density is improving or still getting worse. If it's still getting worse, I think we need a new treatment plan, such as a medication made to treat osteoporosis, like Forteo or Boniva or Fosamax. Any one of those would be great.
However, if the bone density scan shows that my bones are improving, then I will pass those results along to TCI, and hope that Dr. B approves me for surgery. I really really really REALLY hope that I am approved. My body is struggling so much to survive right now. I'm still having swallowing problems, GI problems, heart rate dysregulation, temperature dysregulation, nausea, and horrible headaches. I also notice that I spend a lot of my time trying to get my head in the right position...manually lifting it into place. Even in my sleep, I find myself pushing my head upward or trying to hang it over the edge of the bed. I really hope that the time for my re-fusion is getting near. It would be perfect to schedule surgery for the beginning of the summer, and have the summer off to recuperate. I just can't know until I get this bone scan done.
So, I'm just pushing through while I wait for my bones to be strong. Thank you for following my condition through this very long process!
Easter weekend was busy, but mostly good. Friday night, I went to the Good Friday service at Willow Creek, which was especially meaningful, since my uncle was the main "producer" of the service. I went with a lot of my family, which was really nice. I just had trouble sitting up for the whole service. My spine was uncomfortable and my head was throbbing.
Saturday, I had a mostly good day. Well, after 5:00 that is. I rested and dealt with nausea and headache pain until 5:00. Then, for some reason, I felt pretty good. Most of my symptoms improved and I had an enjoyable night. I didn't go out or anything, because I didn't want to risk feeling sick again.
Sunday, I had to skip Easter services, of course, because I don't get up out of bed until the afternoon...ever! I had three houses to visit for Easter, which proved to be a bit too much to handle. After the first house (which was my mom's), I went to Gus' parents' house and then to my Grandma Millie's house. By the third house, I was gone. My head felt like it was going to explode. I barely ate anything all day, even though I was surrounded by delicious food. Nausea was the main problem. And I'm still dealing with a little extra sensitivity in my GI tract, so I have to be careful what I eat. My headache was the main problem of the day. It built as the day went on, and all I could do was curl up on the couch at my grandma's house. I didn't eat anything or move around or talk very much.
That headache lasted overnight and into Monday. All day Monday, my fatigue and POTS were severe. I couldn't get up for anything. I had been experimenting with my Provigil dose, and I've learned that I cannot function without it! Thank goodness I have that medication to lift the weight of the fatigue.
Then, I had severe nausea that lasted all day Monday and Tuesday. I've been having a difficult time thinking of foods that sound palatable. I've just been so nauseated with very little appetite. And everything I try to eat just tastes bad. For example, for lunch yesterday, I had a couple saltines with peanut butter, 2 baby carrot sticks, one bite of banana bread, and a half an oatmeal cookie. It was all gross.
I have been losing weight, but not too much. Probably because I'm not moving around very much these days. And I still eat a Subway mini sub for dinner most nights of the week. I get turkey on wheat with lots of vegetables. That way, I know I'm not malnourished! I also have healthy cereal with Lactaid milk for breakfast every day, too.
So my body mass index is currently 18.5, which is the borderline between underweight and healthy weight. This means that I shouldn't lose any more weight, but I'm still doing okay! I just have to keep working on maintaining my muscle mass, which I'm trying to do with physical therapy. However, any amount of exercise has been increasing my headache lately...even when I'm just doing isometric holds while lying down!!!
All of this going on while I'm just waiting for my next doctor's appointment. That will be April 27th...less than 2 weeks away! I'll be seeing Dr. Camacho again, who is the head of the Osteoporosis Clinic at Loyola Hospital. She's the one who decided that I should try the megadose of vitamin D with calcium to increase my bone density. So I've been taking that for 4 months, and I really hope it's helping. When I see her, I will beg her to order a new DEXA scan, to find out if my bone density is improving or still getting worse. If it's still getting worse, I think we need a new treatment plan, such as a medication made to treat osteoporosis, like Forteo or Boniva or Fosamax. Any one of those would be great.
However, if the bone density scan shows that my bones are improving, then I will pass those results along to TCI, and hope that Dr. B approves me for surgery. I really really really REALLY hope that I am approved. My body is struggling so much to survive right now. I'm still having swallowing problems, GI problems, heart rate dysregulation, temperature dysregulation, nausea, and horrible headaches. I also notice that I spend a lot of my time trying to get my head in the right position...manually lifting it into place. Even in my sleep, I find myself pushing my head upward or trying to hang it over the edge of the bed. I really hope that the time for my re-fusion is getting near. It would be perfect to schedule surgery for the beginning of the summer, and have the summer off to recuperate. I just can't know until I get this bone scan done.
So, I'm just pushing through while I wait for my bones to be strong. Thank you for following my condition through this very long process!
Friday, April 10, 2009
Symptom Watch, Medication Changes, and POTS stuff
My digestion has gone in the other direction today, probably as a reaction to the medication I took to cope with yesterday's symptoms. It also caused severe abdominal pain. Hopefully, I'll get back on track soon.
The medication changes I've made recently:
less Cymbalta--to help me sleep through the night
less Diamox--to see if I can handle more CSF fluid and prevent possible low pressure symptoms
more Provigil--to see if I can increase my energy.
All of these have seemed to work out so far. They've been very gradual dose changes, and I don't believe they are causing any of my problems.
Having my conditions, especially POTS, is like living on a roller coaster (which may or may not have anything to do with my frequent roller coaster dreams). The autonomic nervous system is supposed to maintain homeostasis, or balance, within the body. But my system overreacts and underreacts to different stimuli, causing me to be constantly out of balance.
The functions of the autonomic nervous system include: heart rate, blood pressure, respiration rate, pupil dilation, digestion, urination, and sexual arousal. This system is divided into two parts: the sympathetic and the parasympathetic nervous systems.
The sympathetic nervous system controls pupil dilation, decreases digestion, generates energy, and increases heart rate. This is responsible for excitation and the "fight or flight" response to stress.
The parasympathetic nervous system dilates the blood vessels, increasing blood flow to the digestive tract, constricts the pupils, and promotes calming of the nerves. This is responsible for the body at rest.
The endocrine, urinary, and reproductive systems are also controlled by the ANS.
With POTS, sitting or standing up causes drastic glitches in the functioning of the ANS. This causes tachycardia, a decrease in blood flow to the brain, and changes in consciousness.
POTS is found secondary to Ehlers-Danlos Syndrome. POTS can cause IBS. And POTS is often mistaken for fibromyalgia or chronic fatigue syndrome. Patients with POTS secondary to EDS are generally plagued with illness their whole life.
However, if my cranial settling can be relieved with fusion revision, there is still a chance that my POTS symptoms will also improve!
The medication changes I've made recently:
less Cymbalta--to help me sleep through the night
less Diamox--to see if I can handle more CSF fluid and prevent possible low pressure symptoms
more Provigil--to see if I can increase my energy.
All of these have seemed to work out so far. They've been very gradual dose changes, and I don't believe they are causing any of my problems.
Having my conditions, especially POTS, is like living on a roller coaster (which may or may not have anything to do with my frequent roller coaster dreams). The autonomic nervous system is supposed to maintain homeostasis, or balance, within the body. But my system overreacts and underreacts to different stimuli, causing me to be constantly out of balance.
The functions of the autonomic nervous system include: heart rate, blood pressure, respiration rate, pupil dilation, digestion, urination, and sexual arousal. This system is divided into two parts: the sympathetic and the parasympathetic nervous systems.
The sympathetic nervous system controls pupil dilation, decreases digestion, generates energy, and increases heart rate. This is responsible for excitation and the "fight or flight" response to stress.
The parasympathetic nervous system dilates the blood vessels, increasing blood flow to the digestive tract, constricts the pupils, and promotes calming of the nerves. This is responsible for the body at rest.
The endocrine, urinary, and reproductive systems are also controlled by the ANS.
With POTS, sitting or standing up causes drastic glitches in the functioning of the ANS. This causes tachycardia, a decrease in blood flow to the brain, and changes in consciousness.
POTS is found secondary to Ehlers-Danlos Syndrome. POTS can cause IBS. And POTS is often mistaken for fibromyalgia or chronic fatigue syndrome. Patients with POTS secondary to EDS are generally plagued with illness their whole life.
However, if my cranial settling can be relieved with fusion revision, there is still a chance that my POTS symptoms will also improve!
Wednesday, April 8, 2009
Quick update
My mood has somewhat improved...as it always seems to go up and down. Life on a roller coaster. With surgery coming up, my nerves are on edge, but ongoing pain and illness also brings about these feelings.
On a separate issue, in general, my digestion has been very regular and pain-free (Yes, I know this is extremely lucky). But today, I've had severe stomach problems. I won't go into detail. But at this point, I'm eating only small amounts of mild foods with a lot of stomach discomfort/unsettling. I know some of my students have had a stomach bug lately, so we'll see if that's what is happening. Either way, this makes it even harder for my body to retain fluids. I'm taking extra salt and drinking Gatorade.
On a separate issue, in general, my digestion has been very regular and pain-free (Yes, I know this is extremely lucky). But today, I've had severe stomach problems. I won't go into detail. But at this point, I'm eating only small amounts of mild foods with a lot of stomach discomfort/unsettling. I know some of my students have had a stomach bug lately, so we'll see if that's what is happening. Either way, this makes it even harder for my body to retain fluids. I'm taking extra salt and drinking Gatorade.
Motivation/Depression
It is so hard to not get sucked into the depression on some days. How do you find the motivation to push your body through all of these symptoms and keep going through the same struggles every single day, all the while putting on a happy face? It's hard day for me. I don't want an answer to this question. It's more of a statement that this life is hard and after so many years, it's hard not to want to give up at times.
And now I'm supposed to go to work, feeling sick and discouraged, fearful and beaten down. My bones hurt when I try to move. My body is so heavy and tired. My head hurts so badly. And I have to get up off this couch, take a bath, drive myself to the church, teach two piano lessons, accompany the choir, then finally drive home, find dinner, and return to my pathetic couch. They may sound like easy things to do, but the thought of it is so overwhelming that it sickens and scares me. I can't keep the tears away today.
It just never ends.
*Edit: Due to unstoppable tears and the same old sickness, I had to cancel work today. I just don't see the point of going on right now. This routine is getting stale. I feel this same way every single day of my life...I can just only hold in those feelings for so long before they come out, like today. I wonder if I should have faith in this next surgery to make me feel any better, when it all seems the same as last time. I wonder how I will make it through the torture that inevitably follows cranio-cervical fusion surgery. And I wonder if I could possibly live a more comfortable, functional life than the one I've been planning. And what would I do with myself if it doesn't help?
I'm having trouble caring about anything that I am currently involved in. I know that I'm just biding my time until I go to New York for the torturous surgery. I don't know how to keep trying and keep caring about anything that happens in this phase of my life. I have such a pathetic existence, watching stupid tv all day and night. It just feels like nothing matters until I can get this stupid surgery done...and then the real trial begins.
I'm not really up for a pep talk. I'm just letting you know what it's like inside my head...what I feel every day.
And now I'm supposed to go to work, feeling sick and discouraged, fearful and beaten down. My bones hurt when I try to move. My body is so heavy and tired. My head hurts so badly. And I have to get up off this couch, take a bath, drive myself to the church, teach two piano lessons, accompany the choir, then finally drive home, find dinner, and return to my pathetic couch. They may sound like easy things to do, but the thought of it is so overwhelming that it sickens and scares me. I can't keep the tears away today.
It just never ends.
*Edit: Due to unstoppable tears and the same old sickness, I had to cancel work today. I just don't see the point of going on right now. This routine is getting stale. I feel this same way every single day of my life...I can just only hold in those feelings for so long before they come out, like today. I wonder if I should have faith in this next surgery to make me feel any better, when it all seems the same as last time. I wonder how I will make it through the torture that inevitably follows cranio-cervical fusion surgery. And I wonder if I could possibly live a more comfortable, functional life than the one I've been planning. And what would I do with myself if it doesn't help?
I'm having trouble caring about anything that I am currently involved in. I know that I'm just biding my time until I go to New York for the torturous surgery. I don't know how to keep trying and keep caring about anything that happens in this phase of my life. I have such a pathetic existence, watching stupid tv all day and night. It just feels like nothing matters until I can get this stupid surgery done...and then the real trial begins.
I'm not really up for a pep talk. I'm just letting you know what it's like inside my head...what I feel every day.
Tuesday, April 7, 2009
Symptom Watch
Saturday night, I had a torture headache overnight into the day Sunday. This headache was over the eyes, worse over the left eye, radiating throughout my head. The pain level was very high and constant for about 24 hours, making sleep mostly impossible, and finding a comfortable position to lie in truly impossible. I felt a constant urge to pull my head up in different directions, making me think that it was likely an instability headache. It was pure agony. I had to resort to a large amount of pain meds and sedatives to help me get through the torture.
A problem I've been having for months now is difficulty sleeping through the night. Some nights, I take my sleep-inducing anti-anxiety medication, and I sleep straight through the night for about 11 hours. But more and more often, I've been having nights where this fails to happen. Sometimes, it is the pain that keeps me up, and wakes me up multiple times during the night. But another problem is that I often wake up after about four hours of sleep, and I don't fall back to sleep for hours. I just lie in bed. When I do fall back to sleep, it is often a very light and fitful sleep. I did a sleep study a few years back, when I was diagnosed with Restless Leg Syndrome. I don't really feel that that's the problem right now, but I'm not concerned enough to get another sleep study done. At least not right now.
With the symptoms getting worse and more frequent, I'm getting more and more anxious for my next surgery.
A problem I've been having for months now is difficulty sleeping through the night. Some nights, I take my sleep-inducing anti-anxiety medication, and I sleep straight through the night for about 11 hours. But more and more often, I've been having nights where this fails to happen. Sometimes, it is the pain that keeps me up, and wakes me up multiple times during the night. But another problem is that I often wake up after about four hours of sleep, and I don't fall back to sleep for hours. I just lie in bed. When I do fall back to sleep, it is often a very light and fitful sleep. I did a sleep study a few years back, when I was diagnosed with Restless Leg Syndrome. I don't really feel that that's the problem right now, but I'm not concerned enough to get another sleep study done. At least not right now.
With the symptoms getting worse and more frequent, I'm getting more and more anxious for my next surgery.
Friday, April 3, 2009
A good day...with lots of symptoms
I had a good day, kind of. I went to physical therapy and went to a movie with my mom tonight. Plus, I made brownies. That's a lot of accomplishment for one day.
I did have tons of symptoms, though...some weird enough to mention.
--Increasing headache throughout the day, and worse with exercise. Very sunken halo feel now. Gotta do traction before bed
--POTS symptoms
--Continuing fever for parts of the day, day 14
--Cold intolerance, chills
--Palpitations
--Vertigo spells, frequent but brief
--Tingling in face...mostly cheeks, lips, and TONGUE. Yes. My tongue has been tingling. Especially when I drink something...it feels like there's electricity going through it...so weird.
Other than that, I miss Gus, because he's out of town for a conference. That's why I'm spending Friday night at my mom's house.
Okay, my eyes are killing me. Hope the traction helps tonight. 23 more days until my endocrinology appointment...which will lead to my next DEXA scan...which should get me approved for surgery. Based on schedules of family, it seems that my surgery can't be before June, so I'm currently hoping for the very beginning of June. Recognizing that all of that is completely dependent upon passing my DEXA scan.
I did have tons of symptoms, though...some weird enough to mention.
--Increasing headache throughout the day, and worse with exercise. Very sunken halo feel now. Gotta do traction before bed
--POTS symptoms
--Continuing fever for parts of the day, day 14
--Cold intolerance, chills
--Palpitations
--Vertigo spells, frequent but brief
--Tingling in face...mostly cheeks, lips, and TONGUE. Yes. My tongue has been tingling. Especially when I drink something...it feels like there's electricity going through it...so weird.
Other than that, I miss Gus, because he's out of town for a conference. That's why I'm spending Friday night at my mom's house.
Okay, my eyes are killing me. Hope the traction helps tonight. 23 more days until my endocrinology appointment...which will lead to my next DEXA scan...which should get me approved for surgery. Based on schedules of family, it seems that my surgery can't be before June, so I'm currently hoping for the very beginning of June. Recognizing that all of that is completely dependent upon passing my DEXA scan.
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