I have a horrible high-pressure headache today, plus pain in my jaw and face. My knees are also quite painful. I need help. Here's an article I found about a girl with chiari:
http://www.wickedlocal.com/weymouth/homepage/x1213266330/11-year-old-lives-in-constant-pain-from-rare-disorder
And an informative article about Ehlers-Danlos Syndrome, which is probably contributing to my body pain:
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds3
Oh well...more research...still no help.
Thursday, September 25, 2008
Need a pain doctor.
I'm so worried at the severity and progression of my pain symptoms lately. I'm having frequent occipital and temporal headaches. Bad muscle spasms in my back. Sharp back pains. Muscle aches, especially in my legs. And scariest: pain in my knees and hips when weight-bearing. The pain lingers after I've been walking or standing. It could be a sign that my loose joints are wearing thin already. I need to get to the right kind of doctor, and soon. If only I knew what kind of doctor could help me.
Wednesday, September 24, 2008
I just wanted to re-post some really important information about the prevalence of chiari, and the number of federally-funded research studies:
Number of people with the following conditions:
ALS (Lou Gehrig's Disease): 20,000 cases in US
Huntington's Disease: 30,000 cases in US
Multiple Sclerosis: 400,000 cases in US
Parkinson's: 500,000 cases in US
Chiari: ~400,000 cases in US (probably more as so many new people are diagnosed every year)
And the number of federally-funded studies for each condition:
ALS: 758
Huntington's: 975
MS: 1,702
Parkinson's: 3,585
Chiari: 10
Seriously. This information is available at:
http://www.conquerchiari.org/newly%20diagnosed_files/frame.htm
And even if you leave the government out of it: think of how often you hear about these other conditions. Think about how much money is raised in fundraisers and walks across the country each year. I truly hope that chiari is on that path...the path to awareness. Because awareness truly does lead to more funding for better research and better treatment options. It also helps patients feel less alone when people understand what they're going through...when people take their condition seriously. If there were more chiari awareness, then gradually, doctors would be better educated in chiari treatment, and patients wouldn't have to travel cross-country or farther for adequate treatment. And the few doctors out there wouldn't be alone in their research and treatment. They wouldn't have the burden of treating all of the chiari patients out there...and fixing all of the botched surgeries performed by local "specialists".
However, I would also like to mention that Conquer Chiari's Walk Across America raised $120,000 for chiari research and awareness. This is a huge success. And it's amazing to know how much just my little group of family and friends was able to contribute to the total number. Personally, I was honored to have $525 donated in my name. But with my mom, my aunt, and my uncle walking as well, I'm sure our donations were substantial. I'm humbled by the amount of support I received.
We hope for the walk to become an annual event, and grow every year.
Number of people with the following conditions:
ALS (Lou Gehrig's Disease): 20,000 cases in US
Huntington's Disease: 30,000 cases in US
Multiple Sclerosis: 400,000 cases in US
Parkinson's: 500,000 cases in US
Chiari: ~400,000 cases in US (probably more as so many new people are diagnosed every year)
And the number of federally-funded studies for each condition:
ALS: 758
Huntington's: 975
MS: 1,702
Parkinson's: 3,585
Chiari: 10
Seriously. This information is available at:
http://www.conquerchiari.org/newly%20diagnosed_files/frame.htm
And even if you leave the government out of it: think of how often you hear about these other conditions. Think about how much money is raised in fundraisers and walks across the country each year. I truly hope that chiari is on that path...the path to awareness. Because awareness truly does lead to more funding for better research and better treatment options. It also helps patients feel less alone when people understand what they're going through...when people take their condition seriously. If there were more chiari awareness, then gradually, doctors would be better educated in chiari treatment, and patients wouldn't have to travel cross-country or farther for adequate treatment. And the few doctors out there wouldn't be alone in their research and treatment. They wouldn't have the burden of treating all of the chiari patients out there...and fixing all of the botched surgeries performed by local "specialists".
However, I would also like to mention that Conquer Chiari's Walk Across America raised $120,000 for chiari research and awareness. This is a huge success. And it's amazing to know how much just my little group of family and friends was able to contribute to the total number. Personally, I was honored to have $525 donated in my name. But with my mom, my aunt, and my uncle walking as well, I'm sure our donations were substantial. I'm humbled by the amount of support I received.
We hope for the walk to become an annual event, and grow every year.
I wrote an incredibly long post, but the computer lost it when I tried to publish it. Now, I'm too exhausted.
I'll just say that I passed out tonight after work, and I feel terrible now. But at least I avoided the e.r.
I'm so mad I lost that post. It's so hard to put my thoughts into words. It's even harder to recreate those words.
I also wrote about fusion surgery being my last realistic hope to feel better in this lifetime. I talked a lot about how I don't believe you need to be super-optimistic to have a chance to recover. I think it has more to do with seeking out new treatments and trying everything you can...not giving up.
I sometimes, like yesterday, want to give up. Give up working. Give up driving. Give up all of the things that cause the most stress and pain.
I'm worried that exercise...even just walking around the house or getting in and out of the car, causes me so much pain. How will I stay in shape or even remotely healthy? Walking hurts. I can't swim with my darn fused neck. I need to find a way to keep my body moving...without using up to much upright energy, and without causing more aching muscles and joints than I already have.
I mentioned wanting to find a pain clinic in the Chicago-area for my generalized body pain that has been plaguing me for some time now.
Finally, I talked more about the "Spoon Story" I mentioned in the last post and how it really helps to describe how I feel. I'll have to retell that another night.
I'll just say that I passed out tonight after work, and I feel terrible now. But at least I avoided the e.r.
I'm so mad I lost that post. It's so hard to put my thoughts into words. It's even harder to recreate those words.
I also wrote about fusion surgery being my last realistic hope to feel better in this lifetime. I talked a lot about how I don't believe you need to be super-optimistic to have a chance to recover. I think it has more to do with seeking out new treatments and trying everything you can...not giving up.
I sometimes, like yesterday, want to give up. Give up working. Give up driving. Give up all of the things that cause the most stress and pain.
I'm worried that exercise...even just walking around the house or getting in and out of the car, causes me so much pain. How will I stay in shape or even remotely healthy? Walking hurts. I can't swim with my darn fused neck. I need to find a way to keep my body moving...without using up to much upright energy, and without causing more aching muscles and joints than I already have.
I mentioned wanting to find a pain clinic in the Chicago-area for my generalized body pain that has been plaguing me for some time now.
Finally, I talked more about the "Spoon Story" I mentioned in the last post and how it really helps to describe how I feel. I'll have to retell that another night.
Waiting...
Things have been quite hard lately. I had to miss work yesterday, because I was truly paralyzed by depression. I have a psychiatrist, who prescribes me 5 different drugs...I've been on some combination of them for 10+ years. I haven't had a psychologist since last summer. One was recommended to me, but I've just found out that she is not in my insurance network. So, I'll have to find a different one. But realistically, I don't know if anyone can really take the hopelessness away. It just comes and goes, as it always has.
I seem to go through two different phases: the fighter phase, and the resignation phase. While I was actively seeking out new treatment, planning trips to New York, having surgery, and doing physical rehabilitation for the majority of this year, I was in a fighter phase. I fought my multiple diagnoses hard, and tried to find ways to rise above them. But now that all of that is over, I've had to accept my life as it is...again. And it hurts, knowing that there's nothing I can do to feel any better. I've been through the cycle so many times. I've been in this exact place, feeling these feelings, so many times. But it never really changes. Because no matter what medicine they put me on, or how they cut me up inside, how many new scars I have on my body (and on my soul), I still go back to feeling like this.
My current plan is supposed to be to wait. I need to see an endocrinologist to have my very mild osteoporosis-like condition treated. Of course, I've already had one refuse to treat me, and I'm awaiting an appointment next month with an osteoporosis specialist. We'll see if she is willing to treat me. The only reason this matters is that Dr. B will not consider further treatment until my bones have a higher density. I have to be on that treatment for 18 months for Dr. B to be satisfied.
So, I'm waiting for that appointment. Also, I have to wait for a full year after spinal cord detethering to see full recovery. (They said the same thing after my fusion...) I just have to wait and see if anything gets any better. That's a really hard place to be in.
I need to work on arranging another support group meeting...but it's a little hard with my schedule and my exhaustion. Still, I think it's an important thing to do.
The widespread body pain has really been plaguing me lately. I should probably consider a new pain doctor, as well. I've had 2 local pain clinics run out of options for me. So, I'll have to find a new one, somewhere. It's quite likely that my pain stems from my Hypermobility Syndrome. There's some interesting information about how this relates to all-over body pain at this site:
http://www.hypermobility.org/painandhms.php
It suggests that people with EDS/Hypermobility Syndrome "may also have a fault in the way their pain signals are picked up for onward transmission to the brain".
There's a story on another site, But You Don't Look Sick, about what it's like to live with a chronic illness. It was originally written about living with Lupus, but it applies to people with all sorts of chronic illnesses. Here's a link, if you're interested. Maybe you could show it to someone you love, to help them understand:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Thanks for listening...to anyone out there.
I seem to go through two different phases: the fighter phase, and the resignation phase. While I was actively seeking out new treatment, planning trips to New York, having surgery, and doing physical rehabilitation for the majority of this year, I was in a fighter phase. I fought my multiple diagnoses hard, and tried to find ways to rise above them. But now that all of that is over, I've had to accept my life as it is...again. And it hurts, knowing that there's nothing I can do to feel any better. I've been through the cycle so many times. I've been in this exact place, feeling these feelings, so many times. But it never really changes. Because no matter what medicine they put me on, or how they cut me up inside, how many new scars I have on my body (and on my soul), I still go back to feeling like this.
My current plan is supposed to be to wait. I need to see an endocrinologist to have my very mild osteoporosis-like condition treated. Of course, I've already had one refuse to treat me, and I'm awaiting an appointment next month with an osteoporosis specialist. We'll see if she is willing to treat me. The only reason this matters is that Dr. B will not consider further treatment until my bones have a higher density. I have to be on that treatment for 18 months for Dr. B to be satisfied.
So, I'm waiting for that appointment. Also, I have to wait for a full year after spinal cord detethering to see full recovery. (They said the same thing after my fusion...) I just have to wait and see if anything gets any better. That's a really hard place to be in.
I need to work on arranging another support group meeting...but it's a little hard with my schedule and my exhaustion. Still, I think it's an important thing to do.
The widespread body pain has really been plaguing me lately. I should probably consider a new pain doctor, as well. I've had 2 local pain clinics run out of options for me. So, I'll have to find a new one, somewhere. It's quite likely that my pain stems from my Hypermobility Syndrome. There's some interesting information about how this relates to all-over body pain at this site:
http://www.hypermobility.org/painandhms.php
It suggests that people with EDS/Hypermobility Syndrome "may also have a fault in the way their pain signals are picked up for onward transmission to the brain".
There's a story on another site, But You Don't Look Sick, about what it's like to live with a chronic illness. It was originally written about living with Lupus, but it applies to people with all sorts of chronic illnesses. Here's a link, if you're interested. Maybe you could show it to someone you love, to help them understand:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Thanks for listening...to anyone out there.
Tuesday, September 23, 2008
I am not okay. I'm getting to be very depressed. I am so sad so much of the time. I know I'm not fun to be around. I'm just so sad. It's such a long, hard journey. I spend much of the day alone. I spend so much of my time feeling so sick. I feel like I have to spend my life pretending to be okay, pretending to be happy, pretending that it's not a challenge to make my body move, pretending to be strong enough to deal with all of the pain. My whole life is an act.
I don't know what could be any different in my life. There's nothing that can change. I like living here with Gus. He is my partner. He's just not around very much. And that won't change for years. Who knows if that will ever change? I love him so much, and he makes me so happy...when he's here...
And it seems that I will be sick for a very long time. Nothing seems to change the way I feel. My pain, my fatigue, my weakness, my intolerance to exercise...it just doesn't change. I can feel my heart work so hard just to keep pumping. I feel the strain it takes just to get the blood to my brain. I just don't know how to keep moving through this life. It's so hard to do anything. I have to fight just to get my body to get up and get dressed in the morning (or afternoon). How long has it been like this? Since the first surgery 6 years ago? No, probably longer. I wouldn't have had that surgery unless I was pretty sick before then.
I'm becoming hopeless again. Things are not going to change for me. I see no end to the pain. I don't know how to make this stupid body work any better. And apparently, neither do the doctors. This last surgery seems so worthless. I pretend not to care. But it matters. I suffered all summer. I worked my butt off to recover. But nothing changes. I don't feel any better. It is still so hard just to make my body move. Such an effort just to walk around. I just hide the strain and pain as much as I can. I know they want to offer me more surgery. There is one more ordeal I could put myself through. But would it make me any better? Will anything ever make me feel any better than I do today?
I don't know what could be any different in my life. There's nothing that can change. I like living here with Gus. He is my partner. He's just not around very much. And that won't change for years. Who knows if that will ever change? I love him so much, and he makes me so happy...when he's here...
And it seems that I will be sick for a very long time. Nothing seems to change the way I feel. My pain, my fatigue, my weakness, my intolerance to exercise...it just doesn't change. I can feel my heart work so hard just to keep pumping. I feel the strain it takes just to get the blood to my brain. I just don't know how to keep moving through this life. It's so hard to do anything. I have to fight just to get my body to get up and get dressed in the morning (or afternoon). How long has it been like this? Since the first surgery 6 years ago? No, probably longer. I wouldn't have had that surgery unless I was pretty sick before then.
I'm becoming hopeless again. Things are not going to change for me. I see no end to the pain. I don't know how to make this stupid body work any better. And apparently, neither do the doctors. This last surgery seems so worthless. I pretend not to care. But it matters. I suffered all summer. I worked my butt off to recover. But nothing changes. I don't feel any better. It is still so hard just to make my body move. Such an effort just to walk around. I just hide the strain and pain as much as I can. I know they want to offer me more surgery. There is one more ordeal I could put myself through. But would it make me any better? Will anything ever make me feel any better than I do today?
Sunday, September 21, 2008
The long weekend is ending
The chiari walk yesterday was a total success. I will post when the final tally of donations is calculated, but we were approaching 6 figures last time I checked!!! It was awesome. I was surrounded by members of my family (including Gus), and was reunited with people from the chiari support meetings. It was great. The coolest thing: there were a bunch of regular people there, and all of them knew about chiari! I think this is a really positive step for chiari awareness and research.
We also found out yesterday that Illinois can finally be included in the list of states that have declared September as Chiari awareness month.
The downside:
The walk was held in the morning. I had to wake up at 7:00. I was able to do it, painfully. I even actually walked for about one mile, once my pills had kicked in. It was very hard, but I did it. Unfortunately, I've been very sick ever since then. Yesterday afternoon, I developed severe pain around my belly button. It felt exactly like the night I was in the e.r. for gallstones. So, we were pretty sure we'd be heading back to the emergency room. Luckily, after writhing in pain for about 90 minutes, the pain eased off. Today, I only have some soreness in the area of my gallbladder. I have no idea what it was about. At first, we thought appendix, since they said the pain from gallstones is hard to tell from appendix pain. But, it eventually lessened, so it really couldn't have been my appendix. I know it wasn't indigestion. I know all about indigestion. I can only guess that it is somehow related to my missing gallbladder, since the pain was so similar. And it was especially odd, because it came on suddenly, and was very severe pain (about a 9). It's the kind of pain that makes you just moan out loud, cause you can't help it.
Anyway, that episode ended, but I didn't get any rest yesterday. I slept fine last night, but have felt terrible all day today. I'm going to have to miss the family gathering tonight, because I'm stuck in bed, and still need to do laundry, cooking for the week, and groceries. Ugh. My symptoms today are pretty severe. I woke with a migraine. Luckily, the Relpax was able to help, but it did make me extra dizzy, too. My joints and muscles are so sore and achy. I can barely move without moaning. My knees hurt, my hips hurt, my ribs hurt, my jaw hurts, my face hurts, my eyes hurt, and my shoulders hurt. My muscles all ache. And I've still got a bad headache, even though the migraine is gone. I still have a sore throat holding on. I've had DayQuil and Advil. Other than that, I don't know what else to do. It even hurts when I take a deep breath. So, I'll stay in bed for now. I'm so tired. I guess it's pretty normal to feel this way.
That's the pretty bad thing...it seems like the more moving I do, the more I hurt the next day. That makes it really hard to exercise...when it actually makes you feel worse...not just for a short time. I can only assume that the body pains I have are related to the Ehlers-Danlos Syndrome (that's the collagen defect that causes my ligaments to be lax). When your joints are loose, they slide around. That causes the pain...I guess.
It's just so hard to have so many diagnoses, to feel so awful, and to still not really know why I feel the way I do so much of the time. After all these years of surgeries and treatments and doctors and meds, there's still so much wrong with me. I sometimes wonder if I have fibromyalgia, too, since it is known to cause widespread pain. It has been found that exercise decreases pain threshold in people with fibromyalgia, when it should increase it. Fibro is usually a comorbid disease, meaning it occurs with another condition.
I'm considering seeking out a new pain doctor, since the pain impedes so much of my life. There are tons of medications out there. I can't have tried all of them already! And I'm not ready to give up on living.
We also found out yesterday that Illinois can finally be included in the list of states that have declared September as Chiari awareness month.
The downside:
The walk was held in the morning. I had to wake up at 7:00. I was able to do it, painfully. I even actually walked for about one mile, once my pills had kicked in. It was very hard, but I did it. Unfortunately, I've been very sick ever since then. Yesterday afternoon, I developed severe pain around my belly button. It felt exactly like the night I was in the e.r. for gallstones. So, we were pretty sure we'd be heading back to the emergency room. Luckily, after writhing in pain for about 90 minutes, the pain eased off. Today, I only have some soreness in the area of my gallbladder. I have no idea what it was about. At first, we thought appendix, since they said the pain from gallstones is hard to tell from appendix pain. But, it eventually lessened, so it really couldn't have been my appendix. I know it wasn't indigestion. I know all about indigestion. I can only guess that it is somehow related to my missing gallbladder, since the pain was so similar. And it was especially odd, because it came on suddenly, and was very severe pain (about a 9). It's the kind of pain that makes you just moan out loud, cause you can't help it.
Anyway, that episode ended, but I didn't get any rest yesterday. I slept fine last night, but have felt terrible all day today. I'm going to have to miss the family gathering tonight, because I'm stuck in bed, and still need to do laundry, cooking for the week, and groceries. Ugh. My symptoms today are pretty severe. I woke with a migraine. Luckily, the Relpax was able to help, but it did make me extra dizzy, too. My joints and muscles are so sore and achy. I can barely move without moaning. My knees hurt, my hips hurt, my ribs hurt, my jaw hurts, my face hurts, my eyes hurt, and my shoulders hurt. My muscles all ache. And I've still got a bad headache, even though the migraine is gone. I still have a sore throat holding on. I've had DayQuil and Advil. Other than that, I don't know what else to do. It even hurts when I take a deep breath. So, I'll stay in bed for now. I'm so tired. I guess it's pretty normal to feel this way.
That's the pretty bad thing...it seems like the more moving I do, the more I hurt the next day. That makes it really hard to exercise...when it actually makes you feel worse...not just for a short time. I can only assume that the body pains I have are related to the Ehlers-Danlos Syndrome (that's the collagen defect that causes my ligaments to be lax). When your joints are loose, they slide around. That causes the pain...I guess.
It's just so hard to have so many diagnoses, to feel so awful, and to still not really know why I feel the way I do so much of the time. After all these years of surgeries and treatments and doctors and meds, there's still so much wrong with me. I sometimes wonder if I have fibromyalgia, too, since it is known to cause widespread pain. It has been found that exercise decreases pain threshold in people with fibromyalgia, when it should increase it. Fibro is usually a comorbid disease, meaning it occurs with another condition.
I'm considering seeking out a new pain doctor, since the pain impedes so much of my life. There are tons of medications out there. I can't have tried all of them already! And I'm not ready to give up on living.
Friday, September 19, 2008
I got a cold last weekend. It didn't seem too bad, but then on Wednesday, it turned into something worse. I was so weak and nauseated. I could barely move and slept all day. Then, Tuesday, I woke up with horrible burning pain through my whole left leg. Luckily, it went away after some rest, breakfast, and Advil. I've also had very frequent migraines this week. I only missed one day of work, but it was a big day. I feel guilty about that.
Well, it's time for a big weekend. I see my psychiatrist, then teach a piano lesson today. Then, tonight is a family birthday celebration. Tomorrow morning is the CHIARI WALK!!! That is huge. I am so excited. I just hope my body can handle the stress of an early morning. Thank God I'll have my wheelchair. Then, Sunday is another family celebration, with the other side of the family.
So, I hope I'm up for everything this weekend. I've gotten enough rest this week, so we'll see.
Thanks to everyone who has sponsored me and my mom in this walk! Your generosity means a lot to me, and is going toward helping so many others. Also, my Uncle Greg and Aunt Corinne are walking, which is so amazing! I am so lucky to have such a supportive family.
Information about the chiari walk is at
http://www.conquerchiari.org/walk/CCWalkAcrossAmerica.htm
The Palatine, Illinois flyer is here:
http://www.conquerchiari.org/walk/Flyer%20Chicago.pdf
Well, it's time for a big weekend. I see my psychiatrist, then teach a piano lesson today. Then, tonight is a family birthday celebration. Tomorrow morning is the CHIARI WALK!!! That is huge. I am so excited. I just hope my body can handle the stress of an early morning. Thank God I'll have my wheelchair. Then, Sunday is another family celebration, with the other side of the family.
So, I hope I'm up for everything this weekend. I've gotten enough rest this week, so we'll see.
Thanks to everyone who has sponsored me and my mom in this walk! Your generosity means a lot to me, and is going toward helping so many others. Also, my Uncle Greg and Aunt Corinne are walking, which is so amazing! I am so lucky to have such a supportive family.
Information about the chiari walk is at
http://www.conquerchiari.org/walk/CCWalkAcrossAmerica.htm
The Palatine, Illinois flyer is here:
http://www.conquerchiari.org/walk/Flyer%20Chicago.pdf
Friday, September 12, 2008
Don't forget the chiari walk is coming up on September 20th!!!
http://www.conquerchiari.org/walk/CCWalkAcrossAmerica.htm
In addition, there is a bill that was just introduced to Congress. House Resolution 1422: Recognizing and promoting awareness of Chiari malformation and expressing support for designation of a "National Chiari Malformation Month".
If you want to read the full details, go to:
http://www.govtrack.us/congress/billtext.xpd?bill=hr110-1422
I'll try to follow the progress of this bill.
http://www.conquerchiari.org/walk/CCWalkAcrossAmerica.htm
In addition, there is a bill that was just introduced to Congress. House Resolution 1422: Recognizing and promoting awareness of Chiari malformation and expressing support for designation of a "National Chiari Malformation Month".
If you want to read the full details, go to:
http://www.govtrack.us/congress/billtext.xpd?bill=hr110-1422
I'll try to follow the progress of this bill.
Thursday, September 4, 2008
I slept well last night, but still have a migraine today, in addition to my constant pressure headache. Ugh.
It's hard to work every day. I may not have it in me. It's so frustrating. My body is so sick and tired. I just can't do everything I need to do. Some days, I just want to give up. My body fails me so often.
How will I find the energy to walk the dog in the rain, take a shower, and teach lessons? It all seems like too much for this sick body.
It's hard to work every day. I may not have it in me. It's so frustrating. My body is so sick and tired. I just can't do everything I need to do. Some days, I just want to give up. My body fails me so often.
How will I find the energy to walk the dog in the rain, take a shower, and teach lessons? It all seems like too much for this sick body.
Wednesday, September 3, 2008
I've worked 2 days so far. And I'm not gonna make it home tonight. That's really frustrating for me. But it's just too much of a hassle to drive an hour just to be back here tomorrow afternoon.
I wear my collar when I drive, but I still get a horrible muscle spasm in my right shoulder/neck area. I need a massage. I wish I could have massage therapy at the end of every evening. The pain is so bad. I wish something could help. I don't even have my valium with me.
I wear my collar when I drive, but I still get a horrible muscle spasm in my right shoulder/neck area. I need a massage. I wish I could have massage therapy at the end of every evening. The pain is so bad. I wish something could help. I don't even have my valium with me.
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