So, about a year ago, I started a diet to lower my cholesterol. It totally worked. In two months, my cholesterol went down by 40 points. The biggest change was that I stopped eating desserts and added sugars. Here was my usual daily diet for the last year:
Cheerios and Fiber One with Lactaid skim milk
1 banana
1 red pepper
sandwich with natural peanut butter and whole wheat bread
1/2 Chicken breast
Brown rice
Broccoli
Snack: Organic graham crackers
That was it. I also lost about 20 pounds. I can't seem to keep much weight on without dessert.
Anyway, after my GI symptoms really flared up in January, I went to the gastroenterologist. I found out nothing, of course. So, I managing my symptoms with a new diet. It's based on the Eating for IBS diet and the FODMAP diet, in case you're interested.
Now, I'm eating this every day:
Cheerios with unsweetened almond milk
2 brown rice cakes with natural peanut butter
1 banana
1/2 chicken breast
Brown rice
cooked carrot shreds
Snack: organic oat cereal
So, this diet has relieved my severe symptoms for the most part (bloating, abdominal pain, and partial obstructions). But I'm not sure how it will affect my cholesterol. I also don't feel like I'm getting a lot of really nutritious foods. The hardest things to cut out nutritionally are wheat and various FODMAP fruits and vegetables. I can experiment with other foods to see if I can tolerate any of them, but so far, it hasn't worked. And I want to avoid GI symptoms, if possible.
Thursday, February 16, 2012
Thursday, February 9, 2012
Nonstop
Okay, so I was awake for much of the night due to a severe migraine. I had symptoms last night that were probably precursors to the migraine, including a visual aura, which I don't usually get. But I had gone 5 days without a migraine previously, which is an improvement.
Now, today, my severe GI symptoms are back, despite my strict diet. I called up the GI office, and they've decided to treat me for Small Intestinal Bacterial Overgrowth (SIBO), even though I cannot afford to get the hydrogen breath test to diagnose it. The treatment is simply 2 weeks of antibiotics. Assuming I can tolerate the medication, it's a simple thing to try. They're even going to give me a sample of the medication, so I don't have to pay for anything. If this doesn't work, I'll have to have an abdominal x-ray done next to check the state of my intestines.
I'm going to be very impatient for these two weeks of antibiotics to see if they are helping. The pain is so severe sometimes, I don't know how I can avoid the E.R. I am glad to be trying something. I can't go to the office to pick up the meds until tomorrow, so that's when I'll start the medicine.
For now, I have peppermint oil capsules, a heating pad, and abdominal massage as my only treatment for this severe pain.
Like I said, it is always something...
Now, today, my severe GI symptoms are back, despite my strict diet. I called up the GI office, and they've decided to treat me for Small Intestinal Bacterial Overgrowth (SIBO), even though I cannot afford to get the hydrogen breath test to diagnose it. The treatment is simply 2 weeks of antibiotics. Assuming I can tolerate the medication, it's a simple thing to try. They're even going to give me a sample of the medication, so I don't have to pay for anything. If this doesn't work, I'll have to have an abdominal x-ray done next to check the state of my intestines.
I'm going to be very impatient for these two weeks of antibiotics to see if they are helping. The pain is so severe sometimes, I don't know how I can avoid the E.R. I am glad to be trying something. I can't go to the office to pick up the meds until tomorrow, so that's when I'll start the medicine.
For now, I have peppermint oil capsules, a heating pad, and abdominal massage as my only treatment for this severe pain.
Like I said, it is always something...
Wednesday, February 8, 2012
Another Rough Day
Well, I'm posting again, so soon, because things have been really hard.
My mood has been low for a few days.
My energy level has also been low--this often has a direct effect on my mood. Literally, I can feel completely hopeless, then take some caffeine, and switch to a very positive mood. This leads to a very up and down life, though.
My body hurts today, a lot. My head hurts, not quite a migraine, but very sensitive to light and very achy. I can't even look at the screen as I type. My muscles all over my body hurt today. I don't know what I did to deserve that one. My knees are particularly painful today, as they are hurting all the time, not just when I'm standing. I'm feeling very nauseated with abdominal fullness and pain, as well. I followed the diet pretty strictly today, so I don't really know what I did to deserve that one either.
A very smart commenter on my last blog post mentioned that perhaps my GI symptoms came on as a result of the new migraine medication. I thought this might be it, but then I remembered that these symptoms actually started several weeks before I started the medication. Also, the pain seems to be very reactive to particular foods, with the exception of tonight.
In addition, my POTS has been particularly troublesome today. Lots of dizzy spells, head rushes, feeling easily out of breath, and chills.
I haven't been sleeping well, which doesn't help with these symptoms. I have a lot of trouble getting comfortable at night. Then, when I fall asleep with pillows carefully arranged to support my body, I inevitably move into a painful position with strain on at least one of my joints while I sleep.
I think I'll go to bed early tonight, although that could make me more restless during the night.
As always, my health is very full of ups and downs, and I can recognize that this is just a down time. That doesn't make it any easier to deal with while I'm in it.
It's hard to keep working each day and put on a cheerful smile when I'm feeling so low. I finish one day of work but immediately start dreading the next.
And yes, I'm considering seeing my psychiatrist, but I will try to give it a little longer...or I may call him tomorrow.
My mood has been low for a few days.
My energy level has also been low--this often has a direct effect on my mood. Literally, I can feel completely hopeless, then take some caffeine, and switch to a very positive mood. This leads to a very up and down life, though.
My body hurts today, a lot. My head hurts, not quite a migraine, but very sensitive to light and very achy. I can't even look at the screen as I type. My muscles all over my body hurt today. I don't know what I did to deserve that one. My knees are particularly painful today, as they are hurting all the time, not just when I'm standing. I'm feeling very nauseated with abdominal fullness and pain, as well. I followed the diet pretty strictly today, so I don't really know what I did to deserve that one either.
A very smart commenter on my last blog post mentioned that perhaps my GI symptoms came on as a result of the new migraine medication. I thought this might be it, but then I remembered that these symptoms actually started several weeks before I started the medication. Also, the pain seems to be very reactive to particular foods, with the exception of tonight.
In addition, my POTS has been particularly troublesome today. Lots of dizzy spells, head rushes, feeling easily out of breath, and chills.
I haven't been sleeping well, which doesn't help with these symptoms. I have a lot of trouble getting comfortable at night. Then, when I fall asleep with pillows carefully arranged to support my body, I inevitably move into a painful position with strain on at least one of my joints while I sleep.
I think I'll go to bed early tonight, although that could make me more restless during the night.
As always, my health is very full of ups and downs, and I can recognize that this is just a down time. That doesn't make it any easier to deal with while I'm in it.
It's hard to keep working each day and put on a cheerful smile when I'm feeling so low. I finish one day of work but immediately start dreading the next.
And yes, I'm considering seeing my psychiatrist, but I will try to give it a little longer...or I may call him tomorrow.
Tuesday, February 7, 2012
Health in Flux
Everything seems to be constantly in flux. I have one health crisis after another...often several at a time. Here's what I've been dealing with lately:
-Frequent, chronic migraines. I'm seeing a headache clinic for this and experimenting with new medications. No more Topamax (i.e. Dopamax--makes you tired and dumb). Trying Lamictal for prevention and experimenting with Relpax and Tramadol for breakthrough migraines. I'm also in physical therapy. The PT involves a technique called dry needling. I've been very interested in trying this treatment, but it can take some time to work, so I'm being patient. The visits are a bit painful, as a small needle is worked deep through my muscle contractures. But it's nothing I can't handle. About a 5 out of 10, I would say.
-Severe GI problems. I've had some severe abdominal cramping and bloating. I've had to return to the "Eating for IBS" diet, along with a new one called the FODMAP diet. My symptoms are much better with restricted eating, but I'm sure this diet isn't great for my cholesterol, because it involves a lot of simple carbs and very little fruits and vegetables. Hopefully, this will be temporary. When this problem first came on, I had to be checked for an abdominal aortic aneurysm. The pain in my abdomen was very severe, and I could feel my pulse like a second heartbeat in my stomach. I tested negative for this, which is good. I was also tested for Celiac Disease, which runs in my family. I tested negative for this, too, which is good. It just means that I need to manage these symptoms with diet and supplements, because the doctors don't know how to help me without more of a diagnosis.
-EDS pain. My joints hurt, more often, and more severely than usual. In particular, my knees, hips, and shoulders are the most painful. There's not much to do for this. I do wear knee braces when needed to help hold things together. There's usually no actual joint injury. Just joint pain due to the joint being too loose.
-Fatigue. This has been in flux. Some days, I thought I was doing a lot better, but I seem to have come back down. So, no real progress for this. My only treatment is caffeine pills, cause Provigil is too expensive. It also seemed to stop working after a while.
-Muscle fatigue. This is a new one. Due to EDS, my muscles get sore very easily. Unfortunately, the day after using a muscle, I'm experiencing muscle fatigue, where the muscle stops working. Nothing to do for this except rest. Most often this is in my hands or forearms. At times, I drop things frequently as my muscle gives out. I can't seem to crochet anymore due to how quickly the muscle becomes fatigued.
-Sleep. I'm always tired. But I'm having trouble sleeping through the night. My sleep is often restless with multiple wake-ups. I need extra sleep since the quality of sleep is poor. I would do well with an afternoon nap, but my current lifestyle doesn't allow it.
-Mood. As always, with many health problems waxing and waning, my mood seems unstable lately. I just have days when it all seems impossible and pointless. I just feel so hopeless. It doesn't seem right, since I've been able to make so much progress in the last few years (no wheelchair, much less time in bed, starting to work a few hours a week...). But it's all so hard. Every day is so hard. It's an ongoing problem for me. Every day is such a challenge, that I just get discouraged. I know that life will never come easily to me. Some things get better; some get worse. So unpredictable. But at the same time, it feels so much the same. Always fighting some new symptom, or returning symptom. Always trying to pull myself through another day. Trying to smile enough to not be completely unpleasant to be around. Trying not to cry about it too often. I do have supportive people in my life. But if I lean on them all the time, it wears on them a lot.
-Coping. Other than that, it's just dealing with life. Cooking. Housework. Part time work. Loneliness. Trying to keep it all together. It's so overwhelming at times. And it's hard to keep up the appearance of being healthy, happy, and normal, when everything seems to be falling apart.
That's the update. Thanks for listening.
-Frequent, chronic migraines. I'm seeing a headache clinic for this and experimenting with new medications. No more Topamax (i.e. Dopamax--makes you tired and dumb). Trying Lamictal for prevention and experimenting with Relpax and Tramadol for breakthrough migraines. I'm also in physical therapy. The PT involves a technique called dry needling. I've been very interested in trying this treatment, but it can take some time to work, so I'm being patient. The visits are a bit painful, as a small needle is worked deep through my muscle contractures. But it's nothing I can't handle. About a 5 out of 10, I would say.
-Severe GI problems. I've had some severe abdominal cramping and bloating. I've had to return to the "Eating for IBS" diet, along with a new one called the FODMAP diet. My symptoms are much better with restricted eating, but I'm sure this diet isn't great for my cholesterol, because it involves a lot of simple carbs and very little fruits and vegetables. Hopefully, this will be temporary. When this problem first came on, I had to be checked for an abdominal aortic aneurysm. The pain in my abdomen was very severe, and I could feel my pulse like a second heartbeat in my stomach. I tested negative for this, which is good. I was also tested for Celiac Disease, which runs in my family. I tested negative for this, too, which is good. It just means that I need to manage these symptoms with diet and supplements, because the doctors don't know how to help me without more of a diagnosis.
-EDS pain. My joints hurt, more often, and more severely than usual. In particular, my knees, hips, and shoulders are the most painful. There's not much to do for this. I do wear knee braces when needed to help hold things together. There's usually no actual joint injury. Just joint pain due to the joint being too loose.
-Fatigue. This has been in flux. Some days, I thought I was doing a lot better, but I seem to have come back down. So, no real progress for this. My only treatment is caffeine pills, cause Provigil is too expensive. It also seemed to stop working after a while.
-Muscle fatigue. This is a new one. Due to EDS, my muscles get sore very easily. Unfortunately, the day after using a muscle, I'm experiencing muscle fatigue, where the muscle stops working. Nothing to do for this except rest. Most often this is in my hands or forearms. At times, I drop things frequently as my muscle gives out. I can't seem to crochet anymore due to how quickly the muscle becomes fatigued.
-Sleep. I'm always tired. But I'm having trouble sleeping through the night. My sleep is often restless with multiple wake-ups. I need extra sleep since the quality of sleep is poor. I would do well with an afternoon nap, but my current lifestyle doesn't allow it.
-Mood. As always, with many health problems waxing and waning, my mood seems unstable lately. I just have days when it all seems impossible and pointless. I just feel so hopeless. It doesn't seem right, since I've been able to make so much progress in the last few years (no wheelchair, much less time in bed, starting to work a few hours a week...). But it's all so hard. Every day is so hard. It's an ongoing problem for me. Every day is such a challenge, that I just get discouraged. I know that life will never come easily to me. Some things get better; some get worse. So unpredictable. But at the same time, it feels so much the same. Always fighting some new symptom, or returning symptom. Always trying to pull myself through another day. Trying to smile enough to not be completely unpleasant to be around. Trying not to cry about it too often. I do have supportive people in my life. But if I lean on them all the time, it wears on them a lot.
-Coping. Other than that, it's just dealing with life. Cooking. Housework. Part time work. Loneliness. Trying to keep it all together. It's so overwhelming at times. And it's hard to keep up the appearance of being healthy, happy, and normal, when everything seems to be falling apart.
That's the update. Thanks for listening.
Wednesday, December 7, 2011
Emotional Breakdown Days
So, some days, I just have to break down. I feel it building over time. I know the breakdown is coming. But it's still so overwhelming when it finally hits.
Today, there were several factors contributing. I've just started rebuilding a home piano studio from nothing, after having to stop teaching 2 years ago (and once before that). So, after advertising for months, I finally have some new students. It seems like it should be easy: one student a day, four days a week. But I've been completely disabled for 2 full years (and a while before that). And I've been working so hard on rebuilding my health since my cranio-cervical fusion in August 2010. I know from my first fusion in 2003 that it takes about 2 years to fully rebuild. But I also know it doesn't always work, since my first fusion failed. I've been devoting all my energy to getting healthy (and planning my wedding, which was last summer, then marketing my new piano studio in a new city). But still, most of my energy since surgery has gone toward getting healthy. I eat healthy. I allow plenty of time for sleep (but can't actually sleep lately). I don't push myself too hard very often. But I do push myself enough to get the minimum of exercise needed each day to keep my POTS under control. But in reality, I spend a lot of time resting and taking care of myself.
But it just ISN'T ENOUGH. I am still SO sick. A GOOD day for me is when I get myself breakfast, take my pills, rest in the recliner for 2 hours, get my lunch, take my pills, rest 2-3 more hours...then maybe am able to get dressed by 3:00. 3:00 is a great day! This only happens after I've had tons of salt and water and high doses of Midodrine PLUS caffeine pills to get me going. I can have a couple of "active hours"-meaning not in bed or in the recliner. Most days, I get dressed just before dinner to be honest. And I still can't shower as often as I'd like. About twice a week.
Supposedly, my head has been fused in the optimal position this time....and so many people just like me are completely relieved of symptoms after this surgery....blah blah blah. My head hurts!!! My constant head pain is lower than before...around a 2 at it's lowest. But about half the days, I get a migraine, cluster headache, or a pressure headache that blasts the pain to a 7-10. And these headaches are all day headaches. And that's just my head.
Today, I had a baseline headache of about 4, but I had severe nausea all day. No vomiting. I know, I'm lucky there's never vomiting. But nausea and zero appetite are pretty freaking miserable too. Of course, sometimes I can eat, but my GI tract doesn't know how to digest food, and I get very sick from that. Anyway, today I was super-nauseated with a mid-range headache. I got through breakfast and lunch. And then, I crashed, which is a possibility every day. Something in my careful daily formula didn't work right, and I just never got going. I could barely move. When my husband got home around 3:30, I couldn't react to him. I could barely see through my slits of eyes. He rushed and got me a salt pill and water. That didn't work so we got a caffeine pill. I chugged 20 ounces of water. About 20 minutes later, I was finally a bit awake. But not enough to get up...just to open my eyes and maintain a conversation.
I had to teach a piano lesson at 5:45. And, like magic, I pulled it off. It's amazing how much you can fake. It took everything I had.
Then, the realization set in. I have a new piano student tomorrow. I have another new student on Monday and another new one on Tuesday. What in the world am I thinking??? How do I expect to build a business with my health like this? I didn't make it to the music store, so I don't have all the materials for the new student tomorrow. Plus, tomorrow is a 3:00 lesson!!! Why did I ever agree to teach at 3:00! And what am I thinking taking on new students when I can barely survive a day?
That's when it all just broke down. I just had to cry and cry at my mess of a life...at how hard it all is...at how pointless all of this hard work seems. I rebuild a business for what? Just to get overworked and end up having to quit again??? And disability won't even pay me since my marriage. So I can't even help that way.
But it's not just that. After we got married, I realized that I could get dressed most days, and my husband was gone a lot of the time. And I wanted something to do with my time. Something useful. Something to help out. Especially since we are barely getting by right now...or actually not really getting by.
Accepting less from myself is something I've done so many times. There were very high hopes for my life. I was supposed to do something great. I had straight A's, was talented, excelled at everything I did. I could do anything. Then, in high school, I had to start accepting less. At first, I just took one less AP class. Then, I went to a small school, cause it was close to home. In college, I had to take a year off for my first cranio-cervical fusion. I had such trouble picking a major, because I wanted to do more, but had to accept less. I finally settled on an interdepartmental major...just so I could graduate. And chose a career that I had already been doing for a few years, but didn't really enjoy. I went on disability at 22, and was in an electric wheelchair. I rebuilt, but got knocked back down and had surgery again at 26. I was down for a while. Now I'm rebuilding again. But it feels like a pointless cycle. Rebuild your life. Become more. Do something with yourself. Get knocked down so hard you have no choice but to do nothing. Accept less. Just survive. Start to rebuild again...
I don't see the point right now. It's all so hard. But for what? Should I even be doing this? Or should I accept that I can't do this? That my body is just not getting better and this cycle is pointless. That no matter how hard I try, my body will fail me. That the other shoe will always drop. This EDS body is not getting stronger. It's getting harder to hold together. My joints will continue to hurt worse my whole life. These symptoms are not going away. Headache is not leaving. Extreme fatigue is going nowhere. It's all just learning to cope. Learning new ways to manage. But it's not really about getting better anymore, is it? I'm past that point. I will have "good" and bad days. But I won't get better. This is the body I'm stuck with for life. And I should know from experience, that acceptance is the real key to emotional coping. If I can just accept that this is the state of my body, then I will be able to deal with it.
There's no more fight to "recover." It's just an ultra-marathon now...the kind with frequent obstacles, and uphill 90% of the time. It's all about endurance. And the only way to endure is to stay strong. Accept the course of your life. Accept this is the crappy body you're stuck with for life. There will be some better days. But most of them will be the same miserable fight you've been dealing with for 10 years.
I can't imagine why anyone would read this. But I had to write it today. It just got to be too much today. Some days are brighter. I know this intellectually. But it's a stormy life. And I've got to hold on tight, cause it's not getting any easier. I know that I wouldn't face this life without my husband, the best friend a girl could ever have, and my mom, who always listens and knows what to say, even when there's nothing to say. I would not deal with all of this without the love and support of my family. I would just give up.
I'm done with metaphors for tonight. Sorry. It's a rough one.
Today, there were several factors contributing. I've just started rebuilding a home piano studio from nothing, after having to stop teaching 2 years ago (and once before that). So, after advertising for months, I finally have some new students. It seems like it should be easy: one student a day, four days a week. But I've been completely disabled for 2 full years (and a while before that). And I've been working so hard on rebuilding my health since my cranio-cervical fusion in August 2010. I know from my first fusion in 2003 that it takes about 2 years to fully rebuild. But I also know it doesn't always work, since my first fusion failed. I've been devoting all my energy to getting healthy (and planning my wedding, which was last summer, then marketing my new piano studio in a new city). But still, most of my energy since surgery has gone toward getting healthy. I eat healthy. I allow plenty of time for sleep (but can't actually sleep lately). I don't push myself too hard very often. But I do push myself enough to get the minimum of exercise needed each day to keep my POTS under control. But in reality, I spend a lot of time resting and taking care of myself.
But it just ISN'T ENOUGH. I am still SO sick. A GOOD day for me is when I get myself breakfast, take my pills, rest in the recliner for 2 hours, get my lunch, take my pills, rest 2-3 more hours...then maybe am able to get dressed by 3:00. 3:00 is a great day! This only happens after I've had tons of salt and water and high doses of Midodrine PLUS caffeine pills to get me going. I can have a couple of "active hours"-meaning not in bed or in the recliner. Most days, I get dressed just before dinner to be honest. And I still can't shower as often as I'd like. About twice a week.
Supposedly, my head has been fused in the optimal position this time....and so many people just like me are completely relieved of symptoms after this surgery....blah blah blah. My head hurts!!! My constant head pain is lower than before...around a 2 at it's lowest. But about half the days, I get a migraine, cluster headache, or a pressure headache that blasts the pain to a 7-10. And these headaches are all day headaches. And that's just my head.
Today, I had a baseline headache of about 4, but I had severe nausea all day. No vomiting. I know, I'm lucky there's never vomiting. But nausea and zero appetite are pretty freaking miserable too. Of course, sometimes I can eat, but my GI tract doesn't know how to digest food, and I get very sick from that. Anyway, today I was super-nauseated with a mid-range headache. I got through breakfast and lunch. And then, I crashed, which is a possibility every day. Something in my careful daily formula didn't work right, and I just never got going. I could barely move. When my husband got home around 3:30, I couldn't react to him. I could barely see through my slits of eyes. He rushed and got me a salt pill and water. That didn't work so we got a caffeine pill. I chugged 20 ounces of water. About 20 minutes later, I was finally a bit awake. But not enough to get up...just to open my eyes and maintain a conversation.
I had to teach a piano lesson at 5:45. And, like magic, I pulled it off. It's amazing how much you can fake. It took everything I had.
Then, the realization set in. I have a new piano student tomorrow. I have another new student on Monday and another new one on Tuesday. What in the world am I thinking??? How do I expect to build a business with my health like this? I didn't make it to the music store, so I don't have all the materials for the new student tomorrow. Plus, tomorrow is a 3:00 lesson!!! Why did I ever agree to teach at 3:00! And what am I thinking taking on new students when I can barely survive a day?
That's when it all just broke down. I just had to cry and cry at my mess of a life...at how hard it all is...at how pointless all of this hard work seems. I rebuild a business for what? Just to get overworked and end up having to quit again??? And disability won't even pay me since my marriage. So I can't even help that way.
But it's not just that. After we got married, I realized that I could get dressed most days, and my husband was gone a lot of the time. And I wanted something to do with my time. Something useful. Something to help out. Especially since we are barely getting by right now...or actually not really getting by.
Accepting less from myself is something I've done so many times. There were very high hopes for my life. I was supposed to do something great. I had straight A's, was talented, excelled at everything I did. I could do anything. Then, in high school, I had to start accepting less. At first, I just took one less AP class. Then, I went to a small school, cause it was close to home. In college, I had to take a year off for my first cranio-cervical fusion. I had such trouble picking a major, because I wanted to do more, but had to accept less. I finally settled on an interdepartmental major...just so I could graduate. And chose a career that I had already been doing for a few years, but didn't really enjoy. I went on disability at 22, and was in an electric wheelchair. I rebuilt, but got knocked back down and had surgery again at 26. I was down for a while. Now I'm rebuilding again. But it feels like a pointless cycle. Rebuild your life. Become more. Do something with yourself. Get knocked down so hard you have no choice but to do nothing. Accept less. Just survive. Start to rebuild again...
I don't see the point right now. It's all so hard. But for what? Should I even be doing this? Or should I accept that I can't do this? That my body is just not getting better and this cycle is pointless. That no matter how hard I try, my body will fail me. That the other shoe will always drop. This EDS body is not getting stronger. It's getting harder to hold together. My joints will continue to hurt worse my whole life. These symptoms are not going away. Headache is not leaving. Extreme fatigue is going nowhere. It's all just learning to cope. Learning new ways to manage. But it's not really about getting better anymore, is it? I'm past that point. I will have "good" and bad days. But I won't get better. This is the body I'm stuck with for life. And I should know from experience, that acceptance is the real key to emotional coping. If I can just accept that this is the state of my body, then I will be able to deal with it.
There's no more fight to "recover." It's just an ultra-marathon now...the kind with frequent obstacles, and uphill 90% of the time. It's all about endurance. And the only way to endure is to stay strong. Accept the course of your life. Accept this is the crappy body you're stuck with for life. There will be some better days. But most of them will be the same miserable fight you've been dealing with for 10 years.
I can't imagine why anyone would read this. But I had to write it today. It just got to be too much today. Some days are brighter. I know this intellectually. But it's a stormy life. And I've got to hold on tight, cause it's not getting any easier. I know that I wouldn't face this life without my husband, the best friend a girl could ever have, and my mom, who always listens and knows what to say, even when there's nothing to say. I would not deal with all of this without the love and support of my family. I would just give up.
I'm done with metaphors for tonight. Sorry. It's a rough one.
Tuesday, November 22, 2011
Happy Thanksgiving
I'm sorry if my last post painted a sad picture-my mood is definitely affected by the long days alone in my apartment. However, it's not all so bleak. My dear husband, Gmex, is the best partner I could ask for. He is constantly supportive of me. He takes care of me on days I need it, but also encourages me to do as much as I can comfortably do. He is always thinking of what might make my life easier and more comfortable. He's very patient when my body gives out or my mood plummets (or both happen at the same time!). All while working toward his PhD way more than full-time.
I couldn't have asked for or expected to find such an ideal life partner for myself. I know I'm a very lucky one, as chronic illness destroys so many relationships. We just make the most out of the time we can spend together. I obviously try to be as supportive and helpful as possible, but he deserves most of the credit for making it work. I know there are more good men out there. But I have the only one I'll ever need. I hope that everyone in my life finds this kind of satisfaction, recognizes it, and appreciates it.
In other news, I'm dealing with migraines that may be cluster headaches. Unfortunately, insurance only covers 8 Relpax a month, and I have the torture headache more than 8 consecutive days when they come. It's gone for now, but I am so scared for when it will start again. I have an appointment at a headache clinic in January.
I had an ob-gyn scare, but the biopsy came back clear. Ultrasound will be tomorrow.
Finally, there is a fascinating new theory on the cause of the EDS/POTS/Cranio-cervical Instability conundrum. Dr. Diana Driscoll has these conditions, as do her children, and she's been conducting clinical trials to support her theory. You can find it at http://www.prettyill.com.
Hope everyone is doing well. Happy Thanksgiving!
I couldn't have asked for or expected to find such an ideal life partner for myself. I know I'm a very lucky one, as chronic illness destroys so many relationships. We just make the most out of the time we can spend together. I obviously try to be as supportive and helpful as possible, but he deserves most of the credit for making it work. I know there are more good men out there. But I have the only one I'll ever need. I hope that everyone in my life finds this kind of satisfaction, recognizes it, and appreciates it.
In other news, I'm dealing with migraines that may be cluster headaches. Unfortunately, insurance only covers 8 Relpax a month, and I have the torture headache more than 8 consecutive days when they come. It's gone for now, but I am so scared for when it will start again. I have an appointment at a headache clinic in January.
I had an ob-gyn scare, but the biopsy came back clear. Ultrasound will be tomorrow.
Finally, there is a fascinating new theory on the cause of the EDS/POTS/Cranio-cervical Instability conundrum. Dr. Diana Driscoll has these conditions, as do her children, and she's been conducting clinical trials to support her theory. You can find it at http://www.prettyill.com.
Hope everyone is doing well. Happy Thanksgiving!
Wednesday, October 5, 2011
Married Life
I've been married for 3 months and living in Wisconsin with my husband. This means I don't live near family right now. So I spend a lot of time alone, while my husband is at work...and I mean, a lot of time.
I've been seeking work, but it's quite difficult getting a new piano studio going in a new area where you don't know everyone.
My health is still up and down, but reaching a better point, I believe. It's hard to write that at a time when I don't feel good at all, but overall, I know it's true.
I sleep about 10 hours now, down from 12, which has changed things quite a bit. Getting off of Topamax was difficult (insomnia, migraines...), but it was really decreasing my energy, so I'm glad to be off of it.
A Day in The Life
I tend to wake up around 10:00. I eat breakfast and rest until noon. On a good day, I try to get dressed and ready for the day from 12:00-1:00. I eat lunch at 1:00. Then, by 2:00, I'm ready to start the day. This only happens on good days, but it's a big improvement over the 6:00pm ready time I used to have.
This means that I really could work a few days a week pretty successfully. I just have only 1 student right now.
It's a bit of a difficult adjustment, getting used to being a "housewife." I spend the days doing laundry, cleaning, cooking, etc. I don't really mind. But it is lonely. I am proud when I have really productive days. But so many days are not too productive, and that's when I tend to get down. Finding piano students is mostly a waiting game. I put my information out there, but then just wait for someone to call.
So, I'm off to make today a more productive day. Gotta start somewhere. Why not laundry and a shower? Hopefully I'll be able to pull it off today.
I've been seeking work, but it's quite difficult getting a new piano studio going in a new area where you don't know everyone.
My health is still up and down, but reaching a better point, I believe. It's hard to write that at a time when I don't feel good at all, but overall, I know it's true.
I sleep about 10 hours now, down from 12, which has changed things quite a bit. Getting off of Topamax was difficult (insomnia, migraines...), but it was really decreasing my energy, so I'm glad to be off of it.
A Day in The Life
I tend to wake up around 10:00. I eat breakfast and rest until noon. On a good day, I try to get dressed and ready for the day from 12:00-1:00. I eat lunch at 1:00. Then, by 2:00, I'm ready to start the day. This only happens on good days, but it's a big improvement over the 6:00pm ready time I used to have.
This means that I really could work a few days a week pretty successfully. I just have only 1 student right now.
It's a bit of a difficult adjustment, getting used to being a "housewife." I spend the days doing laundry, cleaning, cooking, etc. I don't really mind. But it is lonely. I am proud when I have really productive days. But so many days are not too productive, and that's when I tend to get down. Finding piano students is mostly a waiting game. I put my information out there, but then just wait for someone to call.
So, I'm off to make today a more productive day. Gotta start somewhere. Why not laundry and a shower? Hopefully I'll be able to pull it off today.
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