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.
Thursday, April 16, 2009
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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