I was born with a crossed/lazy eye.
My parents tried to get this corrected. They took me to several specialists, a few of whom suggested surgery. My parents were against eye surgery because, well, it's eye surgery.
They went with more non-invasive correction, such as patching the good eye or putting drops in it to blur the vision in order to get the weaker eye to work harder. But surgery was out of the question.
As far as anyone really knew, this was a cosmetic issue.
I'm sure my parents were told that I may see double some, but that my brain would figure out how to suppress the second image over time and see one image.
For the most part, that is true. And, considering how much was really known about eye surgery when I was a kid, I fully support their decision to have done what they did.
My eyes did, indeed, learn to make one image most of the time. At times, I do see double, but usually there is just one image of what I am looking at.
It is not always spatially "correct," but it is still one image.
So, what I didn't know was that, all this time, I was fighting convergence insufficiency.
I started to learn a bit about this in visual therapy. Basically, yeah, my eyes HAVE learned to see one image most of the time.
But it takes work, man.
Sometimes CONSCIOUS, DELIBERATE work.
Like, if I am having a conversation, my eyes will dart all over the place trying to fight for dominance.
Or when I am reading! Ugh! I love reading, but I hate it, too.
It's PHYSICALLY EXHAUSTING and UNCOMFORTABLE!
I really never say anything about it because I didn't know this was even a thing.
I just thought I was a distractable person.
More fuel for the dizziness fire, I suppose.
Showing posts with label therapy. Show all posts
Showing posts with label therapy. Show all posts
Sunday, March 2, 2014
Monday, February 17, 2014
dizziness and fibromyalgia...who knew?
It has been awhile since I've blogged, not because I am suddenly "well," but because things have been pretty much the same.
Sort of.
The dizziness waxes and wanes. I guess that's just the way it is going to be.
On the other hand, my fibromyalgia has been horribly horrendous lately.
I had a 3-week migraine-a-thon around Christmas where, literally, every single day I had a headache - and most of those days it was at migraine level.
That pain seeped into my neck, then into my shoulder, where it has been living quite uncomfortably.
I went to a few days of physical therapy. After some major snow storms, that kind of fell by the wayside.
I'm chalking all that up to "typical" fibromyalgia.
I've also developed a new agony - gum and jaw pain.
This, too, appears to be a fibromyalgia-related ailment. Not as common as migraines and muscle pain, but fibro patients do complain of this type of pain, so.
As I learn more about fibromyalgia, I have become aware of another common symptom:
Dizziness.
Isn't that interesting?
I was diagnosed with fibromyalgia about 2 or 3 years after the vertigo first invaded my life. However, I remember having fibro symptoms several years before that. In fact, I have found old journal entries where I wrote about debilitating fatigue and body aches which were taking place way, way before the first vertigo attack.
So, which came first?
It is true that many who have chronic dizziness develop fibro or fibro-like symptoms from the body's constant fight to keep balanced and make sense of the mixed messages that it gets from the brain versus the world (very detailed explanation here).
However, I remember being sick before the dizziness. IF this dizziness is from the fibro, that is.
I hate that it is such a mystery.
Sort of.
The dizziness waxes and wanes. I guess that's just the way it is going to be.
On the other hand, my fibromyalgia has been horribly horrendous lately.
I had a 3-week migraine-a-thon around Christmas where, literally, every single day I had a headache - and most of those days it was at migraine level.
That pain seeped into my neck, then into my shoulder, where it has been living quite uncomfortably.
I went to a few days of physical therapy. After some major snow storms, that kind of fell by the wayside.
I'm chalking all that up to "typical" fibromyalgia.
I've also developed a new agony - gum and jaw pain.
This, too, appears to be a fibromyalgia-related ailment. Not as common as migraines and muscle pain, but fibro patients do complain of this type of pain, so.
As I learn more about fibromyalgia, I have become aware of another common symptom:
Dizziness.
Isn't that interesting?
I was diagnosed with fibromyalgia about 2 or 3 years after the vertigo first invaded my life. However, I remember having fibro symptoms several years before that. In fact, I have found old journal entries where I wrote about debilitating fatigue and body aches which were taking place way, way before the first vertigo attack.
So, which came first?
It is true that many who have chronic dizziness develop fibro or fibro-like symptoms from the body's constant fight to keep balanced and make sense of the mixed messages that it gets from the brain versus the world (very detailed explanation here).
However, I remember being sick before the dizziness. IF this dizziness is from the fibro, that is.
I hate that it is such a mystery.
Sunday, May 12, 2013
If I wanted your opinion...
The other day, I posted some rules and advice for dealing with a dizziness disorder. I admitted already that it is hard for me to follow my own advice. And so, I have no problem letting off some steam while I, once again, do not do what I tell others to do because I know it's right.
I am so sick and tired of trying to "defend" my illness to people who feel the need to try to diagnose me or my symptoms with NO knowledge whatsover about what they are talking about.
It should not bother me at this point, but it does. Terribly.
First of all, I feel like crap when I'm told by people that my symptoms must be psychological because they are happening at such-and-such a time. For example, my mother says the motion sickness and disorientation that I am experiencing in the car must be psychological because it is happening since I started driving more and working a little bit.
I try to explain to her that 1) These and other problems happen all of the time throughout the year and when I also have nothing going on. They happened all those years I wasn't driving or working at all. As they have been happening over the past 13 years. So for them to happen now isn't any different.
And 2) One of the things that triggers symptoms is stress. Any kind of stress, not just emotional. Physical stress, mental stress, dietary stress, overstimulation, overexertion, overtaxing, and just plain overdoing it. So, when I go from being inactive and working at my own pace at home, where everything is familiar and I have very few deadlines to working, driving around, adding myself as a means of transportation, trying to learn an unfamiliar area, deadlines, demands. This is piling on every stress at once. Seems obvious to me.
Of course, I know my mother also considers that I have a past history of emotional issues. Yes, yes I do. So many of them pertaining to this very same illness, particularly at the beginning of it, during all the years of misdiagnosis and mistreatment, and when I came to realize that I probably will have this the rest of my life. I also had other issues that I was dealing with along the way. Let's just say it's hard to maintain healthy relationships, friendships or habits when you become so incapacitated and, as a result, depressed, anxious and hopeless.
People, in general, are under the assumption that those who suffer any kind of mental difficulty are not worthy of being counted as whole people. That having, say, obsessive-compulsive disorder or panic attacks means that every physical symptom that person feels must manifest from a place in their head, not to be taken seriously.
And so, because I've been depressed, my complaints surely must be psychosomatic.
It really sucks to be treated in this manner. But it doesn't stop there.
Because I was depressed, not only are my symptoms in my head, my entire vestibular disorder is in my head. Despite the medical opinions of several specialists who are in agreement, after testing and treatments. That all doesn't count, because I was depressed. Over getting sick in the first place.
What makes people think it is alright to talk about my illness like they know better than myself or my doctor? And I don't buy the "because they are family" line. I'm not going to ask my mom how her gynecology exam went. I understand boundaries. Some things are personal. Some lines shouldn't be crossed.
It hurts to be told I should go to therapy to deal with the "problems" which cause my balance issues. If only I could heal my vestibular system with talking. I'd be on a couch tomorrow. Can a person "talk" their broken leg into getting back together? Or "analyze" their high cholesterol into resolving itself? This is different how?
Surely not because stress makes it worse. Stress also makes diabetes worse, high blood pressure worse, migraines worse, PMS worse, colds and flu worse. Do people who deal with those ailments get told they have to go to therapy? This is different how?
Because it's invisible? There actually are tests which can help to diagnose BPPV, Meniere's, and other vestibular conditions. How do I know? Because I TOOK them. I wasn't just RANDOMLY treated.
I also happen to keep myself informed. I read about vestibular issues and I speak to others who also suffer from them.
NO MATTER HOW many times I offer this as validation of my physical illness, I encounter flak.
It's frustrating as hell.
Not sure if I feel better now. Still, it had to be said.
I am so sick and tired of trying to "defend" my illness to people who feel the need to try to diagnose me or my symptoms with NO knowledge whatsover about what they are talking about.
It should not bother me at this point, but it does. Terribly.
First of all, I feel like crap when I'm told by people that my symptoms must be psychological because they are happening at such-and-such a time. For example, my mother says the motion sickness and disorientation that I am experiencing in the car must be psychological because it is happening since I started driving more and working a little bit.
I try to explain to her that 1) These and other problems happen all of the time throughout the year and when I also have nothing going on. They happened all those years I wasn't driving or working at all. As they have been happening over the past 13 years. So for them to happen now isn't any different.
And 2) One of the things that triggers symptoms is stress. Any kind of stress, not just emotional. Physical stress, mental stress, dietary stress, overstimulation, overexertion, overtaxing, and just plain overdoing it. So, when I go from being inactive and working at my own pace at home, where everything is familiar and I have very few deadlines to working, driving around, adding myself as a means of transportation, trying to learn an unfamiliar area, deadlines, demands. This is piling on every stress at once. Seems obvious to me.
Of course, I know my mother also considers that I have a past history of emotional issues. Yes, yes I do. So many of them pertaining to this very same illness, particularly at the beginning of it, during all the years of misdiagnosis and mistreatment, and when I came to realize that I probably will have this the rest of my life. I also had other issues that I was dealing with along the way. Let's just say it's hard to maintain healthy relationships, friendships or habits when you become so incapacitated and, as a result, depressed, anxious and hopeless.
People, in general, are under the assumption that those who suffer any kind of mental difficulty are not worthy of being counted as whole people. That having, say, obsessive-compulsive disorder or panic attacks means that every physical symptom that person feels must manifest from a place in their head, not to be taken seriously.
And so, because I've been depressed, my complaints surely must be psychosomatic.
It really sucks to be treated in this manner. But it doesn't stop there.
Because I was depressed, not only are my symptoms in my head, my entire vestibular disorder is in my head. Despite the medical opinions of several specialists who are in agreement, after testing and treatments. That all doesn't count, because I was depressed. Over getting sick in the first place.
What makes people think it is alright to talk about my illness like they know better than myself or my doctor? And I don't buy the "because they are family" line. I'm not going to ask my mom how her gynecology exam went. I understand boundaries. Some things are personal. Some lines shouldn't be crossed.
It hurts to be told I should go to therapy to deal with the "problems" which cause my balance issues. If only I could heal my vestibular system with talking. I'd be on a couch tomorrow. Can a person "talk" their broken leg into getting back together? Or "analyze" their high cholesterol into resolving itself? This is different how?
Surely not because stress makes it worse. Stress also makes diabetes worse, high blood pressure worse, migraines worse, PMS worse, colds and flu worse. Do people who deal with those ailments get told they have to go to therapy? This is different how?
Because it's invisible? There actually are tests which can help to diagnose BPPV, Meniere's, and other vestibular conditions. How do I know? Because I TOOK them. I wasn't just RANDOMLY treated.
I also happen to keep myself informed. I read about vestibular issues and I speak to others who also suffer from them.
NO MATTER HOW many times I offer this as validation of my physical illness, I encounter flak.
It's frustrating as hell.
Not sure if I feel better now. Still, it had to be said.
Tuesday, March 12, 2013
why are we settling?
so I had an appointment today with the nurse practitioner.
this is with the practice that diagnosed my balance disorder and now treats my migraines and fibromyalgia.
they also track the balance disorder, but basically feel that since I've been through balance therapy and, since I've had it for so long, there's nothing more to be done.
however, I think that is a load of crap.
and I'll tell you why.
they've only recently diagnosed this disorder (well recently in the scheme of things considering how long I've had it) and I've had a whole lot of improvement since they have AND ALSO
since then they also discovered that I have herniated discs in my neck.
now, the nurse practitioner gave me this little gem today.
she said that "most people have herniated discs and have no problems with them."
may I take the time here to call bullshit?
seriously now.
they discovered these herniated discs in my neck, not on accident, but because I was HAVING PROBLEMS WITH MY NECK SO THEY DID AN MRI!
she said that, unless the herniated discs press on nerves, do they cause headaches or tingling in the hands.
DOES SHE EVEN LISTEN TO THE THINGS I HAVE BROUGHT UP IN MY VISITS?
I have been going there for at least a YEAR for migraines and telling her that the migraine medicine does not work.
and, I have gone for an EMG IN THAT OFFICE for TINGLING and NUMBNESS of my hands, which has gotten progressively worse.
can somebody please tell me how what I said is DIFFERENT from what she said?
ok, so she decides that I can see pain management for the treatment of my migraines (I guess that's what I'm going for pain management for...I am still planning to bring up the whole hand tingling thing to them anyway), and that will involve shots in my neck or shoulders, so that is listening to me, I guess.
then she does my neuro part of my exam and that makes me dizzy.
it's the looking down that does it. doesn't that say something? it's still my neck. why can't someone put two and two together????
it happens on a delay, too, not immediately, but within, I guess 4-6 seconds. and lasts quite a while.
it comes in waves, too. awful. thinking about it makes me want to get dizzy again, but I'm fighting it.
I don't understand why I can't discuss these issues with a neurologist, you know? why do I have to keep having a nurse practitioner GUESS at these things? it's really pissing me off!!
every time I TRY to make an appointment with the neurologist, the staff tells me that I am just MAINTENANCE and that I only need to see the NP, but I don't feel that this is accurate.
I don't know about other patients, but I have had this vestibular thing for almost 13 years. that's a HELL of a long time to be dizzy. we are talking almost ONE THIRD OF MY LIFE. I am sick and tired of being dizzy, to be perfectly honest. and I imagine, so is everyone around me. it's draining physically, mentally, emotionally and financially.
so, WHY IS IT that MY issues are less important than any other patients? I am not what I would call better. I am not satisfied with the extremely casual attitude the NP had today when she said to me, "some people have vertigo for a very long time."
it has not even been considered that my vertigo is coming from the problems in my neck. I have been to physical therapy for neck MANY YEARS AGO. WHY IS NO ONE CONSIDERING THIS?? HOW DO I GET SOMEONE TO LISTEN?
I guess I'll try the pain management doctor, but who knows? this is almost, but not quite as frustrating as when I had no diagnosis at all.
and, from what I see from others like me, it happens all the time. our issues are, somehow, less important.
go on any vertigo message board and you'll see dozens of frustrated people just like me. or worse. it sucks.
this is with the practice that diagnosed my balance disorder and now treats my migraines and fibromyalgia.
they also track the balance disorder, but basically feel that since I've been through balance therapy and, since I've had it for so long, there's nothing more to be done.
however, I think that is a load of crap.
and I'll tell you why.
they've only recently diagnosed this disorder (well recently in the scheme of things considering how long I've had it) and I've had a whole lot of improvement since they have AND ALSO
since then they also discovered that I have herniated discs in my neck.
now, the nurse practitioner gave me this little gem today.
she said that "most people have herniated discs and have no problems with them."
may I take the time here to call bullshit?
seriously now.
they discovered these herniated discs in my neck, not on accident, but because I was HAVING PROBLEMS WITH MY NECK SO THEY DID AN MRI!
she said that, unless the herniated discs press on nerves, do they cause headaches or tingling in the hands.
DOES SHE EVEN LISTEN TO THE THINGS I HAVE BROUGHT UP IN MY VISITS?
I have been going there for at least a YEAR for migraines and telling her that the migraine medicine does not work.
and, I have gone for an EMG IN THAT OFFICE for TINGLING and NUMBNESS of my hands, which has gotten progressively worse.
can somebody please tell me how what I said is DIFFERENT from what she said?
ok, so she decides that I can see pain management for the treatment of my migraines (I guess that's what I'm going for pain management for...I am still planning to bring up the whole hand tingling thing to them anyway), and that will involve shots in my neck or shoulders, so that is listening to me, I guess.
then she does my neuro part of my exam and that makes me dizzy.
it's the looking down that does it. doesn't that say something? it's still my neck. why can't someone put two and two together????
it happens on a delay, too, not immediately, but within, I guess 4-6 seconds. and lasts quite a while.
it comes in waves, too. awful. thinking about it makes me want to get dizzy again, but I'm fighting it.
I don't understand why I can't discuss these issues with a neurologist, you know? why do I have to keep having a nurse practitioner GUESS at these things? it's really pissing me off!!
every time I TRY to make an appointment with the neurologist, the staff tells me that I am just MAINTENANCE and that I only need to see the NP, but I don't feel that this is accurate.
I don't know about other patients, but I have had this vestibular thing for almost 13 years. that's a HELL of a long time to be dizzy. we are talking almost ONE THIRD OF MY LIFE. I am sick and tired of being dizzy, to be perfectly honest. and I imagine, so is everyone around me. it's draining physically, mentally, emotionally and financially.
so, WHY IS IT that MY issues are less important than any other patients? I am not what I would call better. I am not satisfied with the extremely casual attitude the NP had today when she said to me, "some people have vertigo for a very long time."
it has not even been considered that my vertigo is coming from the problems in my neck. I have been to physical therapy for neck MANY YEARS AGO. WHY IS NO ONE CONSIDERING THIS?? HOW DO I GET SOMEONE TO LISTEN?
I guess I'll try the pain management doctor, but who knows? this is almost, but not quite as frustrating as when I had no diagnosis at all.
and, from what I see from others like me, it happens all the time. our issues are, somehow, less important.
go on any vertigo message board and you'll see dozens of frustrated people just like me. or worse. it sucks.
Friday, July 13, 2012
this and that
I haven't written in a while. Things have been pretty much hectic yet boring at the same time.
The hectic part came with getting my daughter ready for Prom and Graduation. It came and went.
The boring part is, well, every other day. But I'm working on it.
Now that the warm weather is here, I've had a little more energy, so I've been inspired to do a little more to better my situation.
For one, I've decided to become a support parent with Parent to Parent of New York State, an organization that exists basically to put parents of special needs individuals in touch with one another for support and so we can help each other find services, learn to advocate for our kids, things of that nature. I have wanted to do something like this for a long time. I just didn't know how.
For another, I re-did my resume and I now have an interview next week. Shhh! I haven't told many people yet! It's actually not in my normal field, but I've done this type of work before. It's been too long and I need to be productive and with people and out of the house.
I take little jabs at creativity, too. Eh. Not so good so far.
What I really need to do is exercise. I feel myself getting out of shape. Badly! I told Stacy I want a treadmill since I know I won't go on walks. I've gone on exactly 2 this summer. I think I just need to find a good deal on a treadmill on craigslist, set it up, and be done with it.
What I also need to do is write more. And read more. Or my brain will rot. I have been playing games to try to stimulate it, but that's not the same thing. I am amazed at how short my attention span has gotten being home alone all day.
I'm still on the fence about driving. I think I have psyched myself up a little that I can't now, between the physical therapists saying I shouldn't, Stacy being afraid of me driving and me living in an unfamiliar place. I've got to just swallow that fear and do it. Or decide if I really shouldn't.
So, this is all that goes on with me. A lot of neurosis. A lot of nothing. I didn't even mention the constant barraging from "certain people." Yeah, the same "certain person." She is who she is. Hmmm, wonder where the neurosis comes from?
Oh, I went to physical therapy for my neck. Can I just say holy cow, when a person with fibromyalgia gets a massage it hurts like hell! I may not be able to continue to go for PT because I may have used up all of my therapy for balance. They are supposed to look into that and let me know.
The hectic part came with getting my daughter ready for Prom and Graduation. It came and went.
The boring part is, well, every other day. But I'm working on it.
Now that the warm weather is here, I've had a little more energy, so I've been inspired to do a little more to better my situation.
For one, I've decided to become a support parent with Parent to Parent of New York State, an organization that exists basically to put parents of special needs individuals in touch with one another for support and so we can help each other find services, learn to advocate for our kids, things of that nature. I have wanted to do something like this for a long time. I just didn't know how.
For another, I re-did my resume and I now have an interview next week. Shhh! I haven't told many people yet! It's actually not in my normal field, but I've done this type of work before. It's been too long and I need to be productive and with people and out of the house.
I take little jabs at creativity, too. Eh. Not so good so far.
What I really need to do is exercise. I feel myself getting out of shape. Badly! I told Stacy I want a treadmill since I know I won't go on walks. I've gone on exactly 2 this summer. I think I just need to find a good deal on a treadmill on craigslist, set it up, and be done with it.
What I also need to do is write more. And read more. Or my brain will rot. I have been playing games to try to stimulate it, but that's not the same thing. I am amazed at how short my attention span has gotten being home alone all day.
I'm still on the fence about driving. I think I have psyched myself up a little that I can't now, between the physical therapists saying I shouldn't, Stacy being afraid of me driving and me living in an unfamiliar place. I've got to just swallow that fear and do it. Or decide if I really shouldn't.
So, this is all that goes on with me. A lot of neurosis. A lot of nothing. I didn't even mention the constant barraging from "certain people." Yeah, the same "certain person." She is who she is. Hmmm, wonder where the neurosis comes from?
Oh, I went to physical therapy for my neck. Can I just say holy cow, when a person with fibromyalgia gets a massage it hurts like hell! I may not be able to continue to go for PT because I may have used up all of my therapy for balance. They are supposed to look into that and let me know.
Monday, May 14, 2012
quiet rebellion
I've pretty much been doing things my way lately.
last time I was at balance therapy, Stacy told me I don't have to do this for the rest of my life. so, if I don't, why am I doing this? I'm feeling pretty good. seems like the crisis is over for now.
and, since she told me that my last visits would just be to tell me what to do at home, and since going is so inconvenient for all involved, well, the last visit just hasn't happened at all. goodbyes are just so hard.
I haven't been going to talk therapy either. I just haven't been "feeling it." it's been a few weeks and my therapist hasn't called to check in on me. shows how invested he was in me. movin' on.
I have been trying to move more, read more, write more, look for work (can't find the right situation yet), eat healthier.
I've been doing freelance writing. strange experience. very constricting, but I am earning (a tiny bit of) money.
I'm trying to get involved with online things. I'm hosting a twitter chat on May 29th, btw. 3:00 EST. On the DSM-5.
I feel like I'm starting to take a tiny bit of control of my life. just a tiny bit, though. I've got a long way to go. I think if I find something meaningful to do all day, that will help. the writing helps, but it's not enough.
I will keep at this. what choice do I have?
last time I was at balance therapy, Stacy told me I don't have to do this for the rest of my life. so, if I don't, why am I doing this? I'm feeling pretty good. seems like the crisis is over for now.
and, since she told me that my last visits would just be to tell me what to do at home, and since going is so inconvenient for all involved, well, the last visit just hasn't happened at all. goodbyes are just so hard.
I haven't been going to talk therapy either. I just haven't been "feeling it." it's been a few weeks and my therapist hasn't called to check in on me. shows how invested he was in me. movin' on.
I have been trying to move more, read more, write more, look for work (can't find the right situation yet), eat healthier.
I've been doing freelance writing. strange experience. very constricting, but I am earning (a tiny bit of) money.
I'm trying to get involved with online things. I'm hosting a twitter chat on May 29th, btw. 3:00 EST. On the DSM-5.
I feel like I'm starting to take a tiny bit of control of my life. just a tiny bit, though. I've got a long way to go. I think if I find something meaningful to do all day, that will help. the writing helps, but it's not enough.
I will keep at this. what choice do I have?
Friday, May 4, 2012
good to know
I met with Stacy on Monday. but while I was waiting to see her, I asked one of the receptionists how many more visits I had.
I may have explained this before, but with my insurance, I'm entitled to roughly 20 visits. after that, my therapist can assess me and extend my therapy for roughly 20 more, but that is all that I am entitled to for the entire year, regardless of my medical need. so if I get hit by a truck and then need more physical therapy, apparently, I would be out of luck until a year has passed. so it is in my best interest to not use up every single one of my physical therapy visits just on balance therapy, just in case.
so, the receptionist told me, "oh, this is visit 20 of 20."
really? when did they plan on telling me this? wow.
I felt like someone had pulled the rug out from under me. I wasn't ready yet.
other times I had gone to physical therapy, I had known in advance when my last day was coming. I usually brought something in for the therapists as a "thank you" gift, like cookies or something. one practice awards "graduates" with shirts and other tokens when they have completed their therapy. this seemed a bit cold.
I had been seeing these people for months. joking with them. crying to them. and now, because of an arbitrary number set by the government, it was suddenly going to be over. one of my few links to the "outside world." I know I'm taking this way too hard, but my world is very small, and it was about to become even smaller.
so, Stacy came for me and took me to a treatment room so we could discuss my progress. she gave me a few questionnaires to fill out, rating scales which measure my confidence and depression levels.
funny thing about that. since I've studied about these kind of tests and administered them myself, I'm always guessing at what "they" are looking for, and not always what I really feel. it's a terrible way to be, I know. but it's like trying to unlearn to read. you can't do it. try it. just try to look at a page of written words without reading them. yeah, I thought so.
well, I knew that I couldn't seem too depressed and I had to show more confidence than the last time I took these tests and, well, maybe I have progressed somewhat anyway, I don't know. it's hard to be honest when you are trying to not be honest.
in any case, Stacy was happy with my answers, and that's what matters. right?
she told me that we will have a few more sessions where we will plan my dismissal. she'd make sure I was all set with home exercise.
that's when I told her about my little experiment with home exercise. I was ready for her to tell me it was anxiety again.
instead, she told me that I should get a cardiac workup, that what I described to her sounded cardiac. I'm not gonna lie; I started crying. not because I'm worried, but because I felt like an ass.
I don't even know why I felt stupid, though. I guess because I have let doctors push me around and to the side so long and dismiss me, even when I feel things like this. well, why shouldn't I? I let other people do it, too.
I told her I would finally get a physical and go from there. I also asked her if it would be possible to see the neurologist sooner than the end of June. actually, I am seeing the nurse practioner and I want to see the doctor. I didn't think that was unreasonable. neither did Stacy. she told me to tell this to the receptionists (p.s., they couldn't find me an appointment with him). we then had our normal session and I was on my way.
since then, I've made an appointment with my primary care doctor for a physical. I've been exercising some. other than that, business as usual.
I may have explained this before, but with my insurance, I'm entitled to roughly 20 visits. after that, my therapist can assess me and extend my therapy for roughly 20 more, but that is all that I am entitled to for the entire year, regardless of my medical need. so if I get hit by a truck and then need more physical therapy, apparently, I would be out of luck until a year has passed. so it is in my best interest to not use up every single one of my physical therapy visits just on balance therapy, just in case.
so, the receptionist told me, "oh, this is visit 20 of 20."
really? when did they plan on telling me this? wow.
I felt like someone had pulled the rug out from under me. I wasn't ready yet.
other times I had gone to physical therapy, I had known in advance when my last day was coming. I usually brought something in for the therapists as a "thank you" gift, like cookies or something. one practice awards "graduates" with shirts and other tokens when they have completed their therapy. this seemed a bit cold.
I had been seeing these people for months. joking with them. crying to them. and now, because of an arbitrary number set by the government, it was suddenly going to be over. one of my few links to the "outside world." I know I'm taking this way too hard, but my world is very small, and it was about to become even smaller.
so, Stacy came for me and took me to a treatment room so we could discuss my progress. she gave me a few questionnaires to fill out, rating scales which measure my confidence and depression levels.
funny thing about that. since I've studied about these kind of tests and administered them myself, I'm always guessing at what "they" are looking for, and not always what I really feel. it's a terrible way to be, I know. but it's like trying to unlearn to read. you can't do it. try it. just try to look at a page of written words without reading them. yeah, I thought so.
well, I knew that I couldn't seem too depressed and I had to show more confidence than the last time I took these tests and, well, maybe I have progressed somewhat anyway, I don't know. it's hard to be honest when you are trying to not be honest.
in any case, Stacy was happy with my answers, and that's what matters. right?
she told me that we will have a few more sessions where we will plan my dismissal. she'd make sure I was all set with home exercise.
that's when I told her about my little experiment with home exercise. I was ready for her to tell me it was anxiety again.
instead, she told me that I should get a cardiac workup, that what I described to her sounded cardiac. I'm not gonna lie; I started crying. not because I'm worried, but because I felt like an ass.
I don't even know why I felt stupid, though. I guess because I have let doctors push me around and to the side so long and dismiss me, even when I feel things like this. well, why shouldn't I? I let other people do it, too.
I told her I would finally get a physical and go from there. I also asked her if it would be possible to see the neurologist sooner than the end of June. actually, I am seeing the nurse practioner and I want to see the doctor. I didn't think that was unreasonable. neither did Stacy. she told me to tell this to the receptionists (p.s., they couldn't find me an appointment with him). we then had our normal session and I was on my way.
since then, I've made an appointment with my primary care doctor for a physical. I've been exercising some. other than that, business as usual.
Saturday, April 28, 2012
disturbing development
so, I'm supposed to be exercising.
I thought I'd do that yesterday, make a real good effort.
I went through my CD's and put in the Scorpion King Soundtrack and started stretching. so far so good.
then crunches...no problem. then, I was really getting into it, and decided to do aerobics.
I figured that, in order to avoid vertigo, I would do whatever exercises I used to do standing, while lying down.
made sense to me.
so I started moving my arms and legs around to try to get my heart rate up.
then, it hit me.
a wave of dizziness like I'm not used to.
this was not regular vertigo. this was different. like I felt like oxygen was being cut off from my brain.
yes, I know what that feels like. and it felt like that.
I lay on the floor, waiting for it to pass, wondering what the hell is going on with my body.
why did these motions bring on this particular reaction?
was it the movements of my arms? or the bringing up of my heart rate?
I had to know. so I did it again.
after less than a minute, I had the same reaction, only far worse.
I thought for sure someone would find me dead on the floor.
I lay there unable to move for at least a song and a half. that would be, what, 5, 6 minutes?
I never completely lost consciousness, I don't think. almost though.
I thought of calling my partner and telling her to come home. but I figured, why? what's anyone going to do about this? I also thought about calling the neurologist but vetoed that idea as well. I'm going to physical therapy on Monday. I figure I'll talk to Stacy about it. hopefully I can get my point across to her about how this went down and she can tell me what to do next.
I have to admit, this has me a little shaken. I mean, deep down inside, I honestly don't worry about my health because I figure what will be will be but in the end, I just want to get better however;
this now leads me in another direction.
I always figured whatever is "wrong" with me is basically this vertigo crap along with a bunch of arthritis and, yeah, the fibromyalgia, and, while it is all aggravating and tiring and painful, none of it is life-threatening.
but what the hell is THIS??
I thought I'd do that yesterday, make a real good effort.
I went through my CD's and put in the Scorpion King Soundtrack and started stretching. so far so good.
then crunches...no problem. then, I was really getting into it, and decided to do aerobics.
I figured that, in order to avoid vertigo, I would do whatever exercises I used to do standing, while lying down.
made sense to me.
so I started moving my arms and legs around to try to get my heart rate up.
then, it hit me.
a wave of dizziness like I'm not used to.
this was not regular vertigo. this was different. like I felt like oxygen was being cut off from my brain.
yes, I know what that feels like. and it felt like that.
I lay on the floor, waiting for it to pass, wondering what the hell is going on with my body.
why did these motions bring on this particular reaction?
was it the movements of my arms? or the bringing up of my heart rate?
I had to know. so I did it again.
after less than a minute, I had the same reaction, only far worse.
I thought for sure someone would find me dead on the floor.
I lay there unable to move for at least a song and a half. that would be, what, 5, 6 minutes?
I never completely lost consciousness, I don't think. almost though.
I thought of calling my partner and telling her to come home. but I figured, why? what's anyone going to do about this? I also thought about calling the neurologist but vetoed that idea as well. I'm going to physical therapy on Monday. I figure I'll talk to Stacy about it. hopefully I can get my point across to her about how this went down and she can tell me what to do next.
I have to admit, this has me a little shaken. I mean, deep down inside, I honestly don't worry about my health because I figure what will be will be but in the end, I just want to get better however;
this now leads me in another direction.
I always figured whatever is "wrong" with me is basically this vertigo crap along with a bunch of arthritis and, yeah, the fibromyalgia, and, while it is all aggravating and tiring and painful, none of it is life-threatening.
but what the hell is THIS??
Thursday, April 26, 2012
MRI results
well, now I know why I've been getting headaches and neck pain. I have 3 herniated discs in my neck.
the tech on the phone told me this could wait til my appointment in June. really? that sucks a little.
lucky for me I already am going for physical therapy. I hope they can do something for it there.
everything I have read doesn't say, "hey ignore this thing." it says treat it or it can wind up a surgical matter.
it says it causes the weakness in my arms and legs that I have, the numbness in my hands, the horrible headaches, the DIZZINESS.
oh, but let's wait til June.
sure, it's not HIM.
sometimes doctors suck.
perhaps I would like to go on with my life.
maybe even, I don't know, get better?
now that I have a clue what is wrong with me.
just knowing what it is isn't going to make it go away, jackass!
the tech on the phone didn't know I was going for physical therapy...so what if I weren't?
I was just going to WAIT until June with my thumb up my ass?
I will discuss my results with my therapists (because they won't know), but I don't know if they can do anything without talking with the doctor.
more wasted time, more wasted visits.
I'm just a little frustrated now.
see, Medicare only allows so many physical therapy visits, and I think I am approaching my max.
so I feel like I'm working against the clock.
and tonight I'm only going to see an assistant, not my therapist, so he won't be able to do anything. I know he won't.
I'll still bring it up. let's see what happens.
the tech on the phone told me this could wait til my appointment in June. really? that sucks a little.
lucky for me I already am going for physical therapy. I hope they can do something for it there.
everything I have read doesn't say, "hey ignore this thing." it says treat it or it can wind up a surgical matter.
it says it causes the weakness in my arms and legs that I have, the numbness in my hands, the horrible headaches, the DIZZINESS.
oh, but let's wait til June.
sure, it's not HIM.
sometimes doctors suck.
perhaps I would like to go on with my life.
maybe even, I don't know, get better?
now that I have a clue what is wrong with me.
just knowing what it is isn't going to make it go away, jackass!
the tech on the phone didn't know I was going for physical therapy...so what if I weren't?
I was just going to WAIT until June with my thumb up my ass?
I will discuss my results with my therapists (because they won't know), but I don't know if they can do anything without talking with the doctor.
more wasted time, more wasted visits.
I'm just a little frustrated now.
see, Medicare only allows so many physical therapy visits, and I think I am approaching my max.
so I feel like I'm working against the clock.
and tonight I'm only going to see an assistant, not my therapist, so he won't be able to do anything. I know he won't.
I'll still bring it up. let's see what happens.
Wednesday, April 25, 2012
pain in the neck and stress
I saw my PT on Monday.
we did strength training along with VOR. it wasn't easy. in fact, it was hard.
not all of it. parts of it. specifically, the parts where I had to work with weights. here's what happened:
I was minding my own business, lifting 6 whole pounds up and down over my head repetitively and it was getting harder and harder, but I kept going because I knew I was out of shape and I wanted to just get through the exercises and I didn't want to look like the out-of-shape piece of crap that I am and I felt the wave of dizziness just start to surge over me, but I kept on going and going because I figured if I didn't do something, eventually I was going to end up a big blob and I just wanted to finish and I did.
then I put the dumbells onto the rack and let the dizziness take over.
one of the therapists, Lauren, saw me and asked if I was ok. I know they have to ask, but I hate when they ask when you are ok when, clearly, you are not ok. I said not really and sat down fast. She got Stacy, my therapist.
they got me water and tried to dissect my vertigo attack. I felt tears come. I had driven to therapy that day, which was rare, and I didn't want to leave dizzy. they now thought I was "all worked up about driving" and that was why I got dizzy. I knew that wasn't the case. I now was "worked up" about becoming dizzy, but driving there in the first place didn't make me dizzy!!
when I caught my breath, I said to Lauren that the dizziness came after I lifted my hands above my head with the weights, and that this happens at home, too (without weights, obviously). I also explained that I have neck problems and had gone for an MRI recently (still waiting on results, don't ask!) and sometimes even turning my head will make me dizzy.
she said (surprise, surprise) that neck problems can cause dizziness. I knew this. I remember reading this in someone else's blog and then reading more about this online. here is some information now: cervicogenic dizziness
so after the dizziness passed, for some reason, I felt stupid. for some reason, I usually feel stupid. I don't know why. I have no control over the dizziness. it is a physical thing.
maybe it is because they (the therapists) talk about anxiety while the dizziness is happening, or right afterward. or they say things like, "open your eyes," which, is probably good advice. it probably makes you less dizzy and makes the attack faster.
and it's not like anxiety is the worst thing in the world to have. people live with it every day. it is a common human response to stressful situations.
however
sometimes
it's
not
anxiety
and that aggravates the crap out of me.
it brings me back to a terrible, awful, horrible place in my life that I'd rather never visit again.
well, yeah, now that I've mentioned it, I will say it here, even though I now want to cry just typing it.
I probably will cry before this entry is finished.
a few years ago, I was, well, in a bad way.
in a mental hospital. people should not be ashamed to say that. but, society, the way it is, go ahead and judge me.
I was depressed, I was getting help. anyway...
while I was in the hospital, I was getting these vertigo attacks. I've been getting them for 11 years on and off, so it stands to reason.
on top of that, I was under tremendous stress (in a mental hospital, away from my family, depressed), AND, I was being pumped full of different medications to try to stabilize my mood. it's common knowledge that medications can also make someone who is susceptible to being dizzy, dizzier.
well, the thing is, when I would have these attacks, the hospital staff believed I was "acting out."
if anyone has ever seen movies or TV shows about people in mental wards, you know what they do to patients who "act out," right?
I would be yelled at, grabbed, thrown on a bed and pumped with sedatives. nice, huh?
this continued until I demanded to see a neurologist who whispered to me, "I believe you." but not before my stay was extended way longer than it should have been. they thought my "funny walk" was on purpose, too (it was an unsteady gait due to constant vertigo).
so now you know where I'm coming from.
sometimes when people say something is physical, it's physical.
emotional stuff can add to it. and does, oh boy does it!
I wonder if I am ever going to get to the bottom of everything that is going on with me.
I wonder if there is a bottom.
we did strength training along with VOR. it wasn't easy. in fact, it was hard.
not all of it. parts of it. specifically, the parts where I had to work with weights. here's what happened:
I was minding my own business, lifting 6 whole pounds up and down over my head repetitively and it was getting harder and harder, but I kept going because I knew I was out of shape and I wanted to just get through the exercises and I didn't want to look like the out-of-shape piece of crap that I am and I felt the wave of dizziness just start to surge over me, but I kept on going and going because I figured if I didn't do something, eventually I was going to end up a big blob and I just wanted to finish and I did.
then I put the dumbells onto the rack and let the dizziness take over.
one of the therapists, Lauren, saw me and asked if I was ok. I know they have to ask, but I hate when they ask when you are ok when, clearly, you are not ok. I said not really and sat down fast. She got Stacy, my therapist.
they got me water and tried to dissect my vertigo attack. I felt tears come. I had driven to therapy that day, which was rare, and I didn't want to leave dizzy. they now thought I was "all worked up about driving" and that was why I got dizzy. I knew that wasn't the case. I now was "worked up" about becoming dizzy, but driving there in the first place didn't make me dizzy!!
when I caught my breath, I said to Lauren that the dizziness came after I lifted my hands above my head with the weights, and that this happens at home, too (without weights, obviously). I also explained that I have neck problems and had gone for an MRI recently (still waiting on results, don't ask!) and sometimes even turning my head will make me dizzy.
she said (surprise, surprise) that neck problems can cause dizziness. I knew this. I remember reading this in someone else's blog and then reading more about this online. here is some information now: cervicogenic dizziness
so after the dizziness passed, for some reason, I felt stupid. for some reason, I usually feel stupid. I don't know why. I have no control over the dizziness. it is a physical thing.
maybe it is because they (the therapists) talk about anxiety while the dizziness is happening, or right afterward. or they say things like, "open your eyes," which, is probably good advice. it probably makes you less dizzy and makes the attack faster.
and it's not like anxiety is the worst thing in the world to have. people live with it every day. it is a common human response to stressful situations.
however
sometimes
it's
not
anxiety
and that aggravates the crap out of me.
it brings me back to a terrible, awful, horrible place in my life that I'd rather never visit again.
well, yeah, now that I've mentioned it, I will say it here, even though I now want to cry just typing it.
I probably will cry before this entry is finished.
a few years ago, I was, well, in a bad way.
in a mental hospital. people should not be ashamed to say that. but, society, the way it is, go ahead and judge me.
I was depressed, I was getting help. anyway...
while I was in the hospital, I was getting these vertigo attacks. I've been getting them for 11 years on and off, so it stands to reason.
on top of that, I was under tremendous stress (in a mental hospital, away from my family, depressed), AND, I was being pumped full of different medications to try to stabilize my mood. it's common knowledge that medications can also make someone who is susceptible to being dizzy, dizzier.
well, the thing is, when I would have these attacks, the hospital staff believed I was "acting out."
if anyone has ever seen movies or TV shows about people in mental wards, you know what they do to patients who "act out," right?
I would be yelled at, grabbed, thrown on a bed and pumped with sedatives. nice, huh?
this continued until I demanded to see a neurologist who whispered to me, "I believe you." but not before my stay was extended way longer than it should have been. they thought my "funny walk" was on purpose, too (it was an unsteady gait due to constant vertigo).
so now you know where I'm coming from.
sometimes when people say something is physical, it's physical.
emotional stuff can add to it. and does, oh boy does it!
I wonder if I am ever going to get to the bottom of everything that is going on with me.
I wonder if there is a bottom.
Wednesday, April 18, 2012
eating steady
today, I'm trying something "different."
it's really not different, because I've tried it before, but now I'm trying it again with more knowledge.
I'm going super-low-carb in an effort to control my vertigo. I'm pretty much following Atkins.
this is what I know:
many years ago, while I was engaged to the Evil One, the two of us went on a very low-carb diet, at that time, to lose weight. We both did...a good amount, too. But, what was remarkable was that, at the same time, my overall health improved. smart as I was, I didn't put 2 and 2 together.
see, at the time, I was pretty much bedridden and going to physical therapy to try to learn to walk again after a major vertigo attack. I couldn't do much else except sleep and drink these high-protein shakes. after a few months, my balance got better. I thought it was a miracle.
by the time the Evil One and I got married, I was able to dance at my wedding. then, like two schmucks, we ate like pigs on our honeymoon. I remember collapsing in his cousin's yard. we thought it was from partying a little two hard. now, looking back, I know it was from my system saying, "hey, what are you doing to me??" two weeks after we were married, I suffered a worse vertigo attack than the one I'd had that winter. low-carb to over-carb...my body was in overdrive. I knew none of that then, though. I didn't even know it was vertigo, then. we were still working with the diagnosis of dystonia (and/or "it's all in your head")!
being part of several dizzy/Meniere's/balance disorders support groups has led me to learn that my blood sugar directly affects my balance problems. this is significant information to know. for so many reasons. for example:
1. I should not go without eating. I already know that I am hypoglycemic; I found that out like 20 some-odd years ago. so, since my blood sugar tends to get on the low side all by itself, it does not need help from me not eating properly. that's just plain idiotic.
2. stress does have an effect on my balance disorder. why? because stress affects your adrenals which, in turn, affects your insulin production which, in turn, affects your blood sugar. diabetics, take note...stress affects you, too, in a very similar way!
3. other things I put into my body also affect my balance disorder. one of them is medication. another is cigarettes. one I can't do anything about. the other...well...let me get the diet thing going first and I'll get back to that one. it's hard to give up smoking when you live with a smoker. however, being less dizzy is a good incentive, so...
4. if I lose weight, I will be less dizzy. why? because my body will function more properly; therefore, my organs will work the way they should. also, my hormones will be at a more stable level. so, that brings me back to the topic of today.
I absolutely, positively hate thinking about food. hard to believe, considering my weight, but it's true. the Nurse Practitioner said it is probably due to the medications I take. but, get this, because I actually eat very little, my body holds onto the food I do eat like it's in starvation mode because it doesn't know when it's getting its next food, so, even though I don't actually eat enough to justify my round shape, I maintain it because I have done a fabulous job of messing up my metabolism. that, and the fact that I don't expend enough calories to boot.
so, I also need to exercise more. I'm working on that one, too. it's very hard to stay motivated all alone.
it's really not different, because I've tried it before, but now I'm trying it again with more knowledge.
I'm going super-low-carb in an effort to control my vertigo. I'm pretty much following Atkins.
this is what I know:
many years ago, while I was engaged to the Evil One, the two of us went on a very low-carb diet, at that time, to lose weight. We both did...a good amount, too. But, what was remarkable was that, at the same time, my overall health improved. smart as I was, I didn't put 2 and 2 together.
see, at the time, I was pretty much bedridden and going to physical therapy to try to learn to walk again after a major vertigo attack. I couldn't do much else except sleep and drink these high-protein shakes. after a few months, my balance got better. I thought it was a miracle.
by the time the Evil One and I got married, I was able to dance at my wedding. then, like two schmucks, we ate like pigs on our honeymoon. I remember collapsing in his cousin's yard. we thought it was from partying a little two hard. now, looking back, I know it was from my system saying, "hey, what are you doing to me??" two weeks after we were married, I suffered a worse vertigo attack than the one I'd had that winter. low-carb to over-carb...my body was in overdrive. I knew none of that then, though. I didn't even know it was vertigo, then. we were still working with the diagnosis of dystonia (and/or "it's all in your head")!
being part of several dizzy/Meniere's/balance disorders support groups has led me to learn that my blood sugar directly affects my balance problems. this is significant information to know. for so many reasons. for example:
1. I should not go without eating. I already know that I am hypoglycemic; I found that out like 20 some-odd years ago. so, since my blood sugar tends to get on the low side all by itself, it does not need help from me not eating properly. that's just plain idiotic.
2. stress does have an effect on my balance disorder. why? because stress affects your adrenals which, in turn, affects your insulin production which, in turn, affects your blood sugar. diabetics, take note...stress affects you, too, in a very similar way!
3. other things I put into my body also affect my balance disorder. one of them is medication. another is cigarettes. one I can't do anything about. the other...well...let me get the diet thing going first and I'll get back to that one. it's hard to give up smoking when you live with a smoker. however, being less dizzy is a good incentive, so...
4. if I lose weight, I will be less dizzy. why? because my body will function more properly; therefore, my organs will work the way they should. also, my hormones will be at a more stable level. so, that brings me back to the topic of today.
I absolutely, positively hate thinking about food. hard to believe, considering my weight, but it's true. the Nurse Practitioner said it is probably due to the medications I take. but, get this, because I actually eat very little, my body holds onto the food I do eat like it's in starvation mode because it doesn't know when it's getting its next food, so, even though I don't actually eat enough to justify my round shape, I maintain it because I have done a fabulous job of messing up my metabolism. that, and the fact that I don't expend enough calories to boot.
so, I also need to exercise more. I'm working on that one, too. it's very hard to stay motivated all alone.
Sunday, April 15, 2012
taming the migraine
I got in to see the nurse practitioner Monday.
she made an adjustment to my medication. she also gave me an "emergency" migraine pill, to be taken when the headache is really bad. it seemed to work pretty well.
I also went for an MRI of my neck. this is because I discovered somewhere along the line that my neck has been hurting really badly. the NP wants to check this out because I have had an old injury on my neck (whiplash) which has required physical therapy and she said this could be responsible for the headaches now. she explained in detail how the nerves in the neck reach the nerves in the head and into the eye, where I have the most of my pain. she also wants me to get physical therapy for my neck when I go for the other therapy.
we also talked about my progress at balance therapy (or lack thereof). she was very frank with me. she told me that, after 11+ years and this many months of therapy, it is what it is. some people just have to learn to live with being dizzy. however, the goal of balance therapy, she told me, is to learn to adapt to being dizzy. be comfortable with it, if you will. learn to live with being dizzy.
I'm going to be honest. I'm not comfortable with being dizzy. I'm not happy with it. I'm not accepting of it.
I do understand it, for the most part. I still don't know how I got it in the first place. Or why I have to be one of the "chosen ones" who get to keep my vertigo where there are lots of "normies" walking around who get vertigo and it goes away. It's just like everything else in my life. If something unappealing and less desirable could happen to a person, it's going to happen to me. I'll get the weird side effects of medications, I'll get the strange symptoms, the wrong diagnoses. And, apparently, the less-likely ones, too. Vertigo forever. It could be the name of punk band.
I've gone twice to bathe dogs with Stacy. I held up better than I thought I would. there were times I got dizzy and tired, but I pushed through it. if I'm going to be dizzy forever, I have to just cowgirl up and do things dizzy. Now that sounds like a slogan..."Do things DIZZY" should I put that on t-shirts?
she made an adjustment to my medication. she also gave me an "emergency" migraine pill, to be taken when the headache is really bad. it seemed to work pretty well.
I also went for an MRI of my neck. this is because I discovered somewhere along the line that my neck has been hurting really badly. the NP wants to check this out because I have had an old injury on my neck (whiplash) which has required physical therapy and she said this could be responsible for the headaches now. she explained in detail how the nerves in the neck reach the nerves in the head and into the eye, where I have the most of my pain. she also wants me to get physical therapy for my neck when I go for the other therapy.
we also talked about my progress at balance therapy (or lack thereof). she was very frank with me. she told me that, after 11+ years and this many months of therapy, it is what it is. some people just have to learn to live with being dizzy. however, the goal of balance therapy, she told me, is to learn to adapt to being dizzy. be comfortable with it, if you will. learn to live with being dizzy.
I'm going to be honest. I'm not comfortable with being dizzy. I'm not happy with it. I'm not accepting of it.
I do understand it, for the most part. I still don't know how I got it in the first place. Or why I have to be one of the "chosen ones" who get to keep my vertigo where there are lots of "normies" walking around who get vertigo and it goes away. It's just like everything else in my life. If something unappealing and less desirable could happen to a person, it's going to happen to me. I'll get the weird side effects of medications, I'll get the strange symptoms, the wrong diagnoses. And, apparently, the less-likely ones, too. Vertigo forever. It could be the name of punk band.
I've gone twice to bathe dogs with Stacy. I held up better than I thought I would. there were times I got dizzy and tired, but I pushed through it. if I'm going to be dizzy forever, I have to just cowgirl up and do things dizzy. Now that sounds like a slogan..."Do things DIZZY" should I put that on t-shirts?
Friday, March 30, 2012
driver's seat
yeah, I drove yesterday. because I felt like it.
it was time for my appointment and Stacy was sleeping, and I tried to wake her up, but she kept sleeping, so I got the keys and got into the car and drove myself to balance therapy.
it wasn't so bad. I still know how to do it.
look, last time I didn't drive for SIX YEARS and then got behind the wheel and went. so this was nothing.
Ed, my therapist was a little shocked. he is not a fan of me driving. but then he conceded that it is probably just as difficult to be a passenger (for a vestibular patient) as it is to be a driver. if not more so. helllooooo!
when I got back, Stacy was still in bed. however, later on, she told me that she was quite upset with me. she wants me to be safe. she knows that balance therapy can be difficult on me. Ed took it easy on me, by the way, knowing that I drove, and I waited afterward just to be sure.
I was fine. I plan to continue driving. it's something I have to do as long as I can, of course.
I'm not an idiot. I know when I can and when I can't. yesterday, I could and, obviously, I did.
I have to keep on believing I've got guts. otherwise, I'll shrivel up in a corner and die somewhere.
that's not to say I'm going to go do stupid stuff. but I've got to take chances, believe, do, feel, risk.
I'm too young to say this is it.
my kids deserve better. I deserve better.
so, if right now, that means drive a car, I will drive a car.
who knows what that will mean tomorrow?
it was time for my appointment and Stacy was sleeping, and I tried to wake her up, but she kept sleeping, so I got the keys and got into the car and drove myself to balance therapy.
it wasn't so bad. I still know how to do it.
look, last time I didn't drive for SIX YEARS and then got behind the wheel and went. so this was nothing.
Ed, my therapist was a little shocked. he is not a fan of me driving. but then he conceded that it is probably just as difficult to be a passenger (for a vestibular patient) as it is to be a driver. if not more so. helllooooo!
when I got back, Stacy was still in bed. however, later on, she told me that she was quite upset with me. she wants me to be safe. she knows that balance therapy can be difficult on me. Ed took it easy on me, by the way, knowing that I drove, and I waited afterward just to be sure.
I was fine. I plan to continue driving. it's something I have to do as long as I can, of course.
I'm not an idiot. I know when I can and when I can't. yesterday, I could and, obviously, I did.
I have to keep on believing I've got guts. otherwise, I'll shrivel up in a corner and die somewhere.
that's not to say I'm going to go do stupid stuff. but I've got to take chances, believe, do, feel, risk.
I'm too young to say this is it.
my kids deserve better. I deserve better.
so, if right now, that means drive a car, I will drive a car.
who knows what that will mean tomorrow?
Tuesday, March 27, 2012
working my eyes
I had my first session of vision therapy yesterday.
I'm not sure how I feel about it.
it's weird. it's hard. it's fun. it's frustrating.
the doctor asks me if I see things in 3D. I'm not sure if I do or not.
my crossed eye has fascinated eye doctors for years. why? it's just a weird-looking eye. yet, every time doctors see it, they want to play with it. they want to see if I can see this or that. if I have single binocular vision (I do not). how my depth perception is (horrible). if both eyes can see (yes).
who knew that something so annoying and inconvenient and ugly as a crossed eye could be so interesting?
(I've had people tell me it's attractive, if you could believe that! I don't get it, either...)
I look at lights and letters and numbers and beads.
one eye covered. both eyes together. with prisms. with 3D glasses.
he brought up surgery again. I listened with 1/8th of an ear. not really interested. he said it wouldn't be to straighten my eye all the way, anyway, but just some of the way. so, um, no.
I got exercises to do at home. and a nifty clip-on patch for my glasses.
recovering is hard work. I feel like it's going to take forever. for something that may happen.
guess it's better than not doing anything, though.
I'm not sure how I feel about it.
it's weird. it's hard. it's fun. it's frustrating.
the doctor asks me if I see things in 3D. I'm not sure if I do or not.
my crossed eye has fascinated eye doctors for years. why? it's just a weird-looking eye. yet, every time doctors see it, they want to play with it. they want to see if I can see this or that. if I have single binocular vision (I do not). how my depth perception is (horrible). if both eyes can see (yes).
who knew that something so annoying and inconvenient and ugly as a crossed eye could be so interesting?
(I've had people tell me it's attractive, if you could believe that! I don't get it, either...)
I look at lights and letters and numbers and beads.
one eye covered. both eyes together. with prisms. with 3D glasses.
he brought up surgery again. I listened with 1/8th of an ear. not really interested. he said it wouldn't be to straighten my eye all the way, anyway, but just some of the way. so, um, no.
I got exercises to do at home. and a nifty clip-on patch for my glasses.
recovering is hard work. I feel like it's going to take forever. for something that may happen.
guess it's better than not doing anything, though.
Monday, March 19, 2012
trying to 'break free"
I've been feeling restless lately.
maybe it's the unusually warm winter, or my medication (or lack thereof), which has been making me feel better mentally as well as physically, or maybe it's the balance therapy, or maybe it's a combination of some or all of these things, but I've been feeling like it's time to move on to the next "thing," whatever that may be.
so I've been entertaining the idea of going back to work.
I never have stopped "looking" for work, but I never respond to help wanted ads. I still don't. not yet. but I have started looking more closely, trying to match my skills and location and such.
some days I feel more ready than others.
I was feeling pretty good about this decision this week, in fact. very much so. I began talking about it with family and friends. I got a lot of pep talks and advice. start slow, work part-time, you can do anything you set your mind to, you've done this before...
I have come back from worse, much worse. my vertigo attacks have left me unable to walk, barely able to breathe, hardly able to think.
I'm not there. I'm here. walking, breathing, thinking.
bring on the job, then, right?
I don't know.
because then something so simple as a trip to Lowe's home improvement store makes me doubt all that.
I went there today with my girlfriend to look at patio furniture. I was in there maybe 10 minutes when I look up one of the huge shelves for cushions and the dizziness starts.
I try to ignore it and go about my business. even after my partner points it out. I tell her that I need to try to deal with busy environments.
we keep shopping, but there is no relief from the lights, the movement, the stimulation of the store. my head keeps buzzing and I start to feel overheated. I stumble around some.
I don't want to leave even though I am swaying. I'm tired of my prison at home. Eventually, though, it becomes too much and we leave.
Stacy can't resist asking, "part-time job, right?" really? as if I weren't disgusted enough.
I'm thoughtful the rest of the day. thoughtful as in disappointed. I feel like I'm chained to the house. whenever I leave it, I get over-stimulated and dizzy. How will I ever get back to a normal life?
maybe it's the unusually warm winter, or my medication (or lack thereof), which has been making me feel better mentally as well as physically, or maybe it's the balance therapy, or maybe it's a combination of some or all of these things, but I've been feeling like it's time to move on to the next "thing," whatever that may be.
so I've been entertaining the idea of going back to work.
I never have stopped "looking" for work, but I never respond to help wanted ads. I still don't. not yet. but I have started looking more closely, trying to match my skills and location and such.
some days I feel more ready than others.
I was feeling pretty good about this decision this week, in fact. very much so. I began talking about it with family and friends. I got a lot of pep talks and advice. start slow, work part-time, you can do anything you set your mind to, you've done this before...
I have come back from worse, much worse. my vertigo attacks have left me unable to walk, barely able to breathe, hardly able to think.
I'm not there. I'm here. walking, breathing, thinking.
bring on the job, then, right?
I don't know.
because then something so simple as a trip to Lowe's home improvement store makes me doubt all that.
I went there today with my girlfriend to look at patio furniture. I was in there maybe 10 minutes when I look up one of the huge shelves for cushions and the dizziness starts.
I try to ignore it and go about my business. even after my partner points it out. I tell her that I need to try to deal with busy environments.
we keep shopping, but there is no relief from the lights, the movement, the stimulation of the store. my head keeps buzzing and I start to feel overheated. I stumble around some.
I don't want to leave even though I am swaying. I'm tired of my prison at home. Eventually, though, it becomes too much and we leave.
Stacy can't resist asking, "part-time job, right?" really? as if I weren't disgusted enough.
I'm thoughtful the rest of the day. thoughtful as in disappointed. I feel like I'm chained to the house. whenever I leave it, I get over-stimulated and dizzy. How will I ever get back to a normal life?
Tuesday, March 13, 2012
sensitivity
yesterday, I worked a lot on VOR exercises (vestibulo-ocular reflex) in therapy. they are, basically, the ones to stimulate the vestibular system in order for me to do everyday things. for example, walking down a hallway while turning my head to simulate, well, walking anywhere while turning my head, but this is exaggerated and done over and over again. I think I walked down the same hallway yesterday 20 times looking up, down, side-to-side and diagonally. some of the motions made me more dizzy than others. usually the up-and-down seems to get me.
I read in someone else's blog about something called cervical vertigo. basically, this is vertigo caused by a compression of the nerves in your neck. it got me wondering if this is, possibly, the cause of my vertigo. I have been in physical therapy several times before for arthritis and this can be one of the causes. also, I seem to have vertigo more when I move my head in certain positions than in others. I don't know. something to keep in my back pocket...
anyway, I did other VOR exercises, too, including my torturous B, and others, like standing on a rocking board and on a cushion. I do all of these pretty well, now. it's afterward that I may or may not have a problem. still. but this is progress, they tell me. I'm doing better than when I started. my little voice still wonders if I am just "over" my spell of vertigo for now and will it come back, or is this true progress? it's scary. because then things happen like the following:
I go on the treadmill, as I have been doing for weeks. I'm with a different therapist (the one I was "short" with a while back, but it was all good), so she has her own way of working with me. she has me gradually work up to the speed she wants me to walk at. 1.3, no problem. 1.5, trotting along. 1.7 this is cake. then she hits 1.9. this is still slower than the speed I usually walk at but for some reason, the machine starts making a weird grinding noise that my body cannot handle. immediately, I go into "overload mode." my eyes close of the own free will, my face grimaces (it's ugly, too), my muscles start contorting. I start holding my breath involuntarily. I am still walking the treadmill, but I start wondering if I am going to pass out right there. my normal therapist sees this and asks if I am all right. I find I can't exactly form words to answer her, just parts of words, but I am able to convey to her that I am not exactly "all right." she reminds me to breathe and focus and comes over to lower the speed on the treadmill. as soon as she does, the noise goes away and my body immediately relaxes. an assistant is with her. Stacy (my therapist) asks again if I am all right and I tell her that the machine was making a weird noise. before I can say anything, the assistant asks me, "oh, you were afraid of it?" in a kind of nurturing, yet condescending voice. What?
Stacy had to go back to work with her patient a moment, and the assistant had gone with her. I was alone on the treadmill, inwardly shaking my head (had I actually shook my head, I'd have been quite dizzy). did she actually say that? it was just a bizarre question...
I read in someone else's blog about something called cervical vertigo. basically, this is vertigo caused by a compression of the nerves in your neck. it got me wondering if this is, possibly, the cause of my vertigo. I have been in physical therapy several times before for arthritis and this can be one of the causes. also, I seem to have vertigo more when I move my head in certain positions than in others. I don't know. something to keep in my back pocket...
anyway, I did other VOR exercises, too, including my torturous B, and others, like standing on a rocking board and on a cushion. I do all of these pretty well, now. it's afterward that I may or may not have a problem. still. but this is progress, they tell me. I'm doing better than when I started. my little voice still wonders if I am just "over" my spell of vertigo for now and will it come back, or is this true progress? it's scary. because then things happen like the following:
I go on the treadmill, as I have been doing for weeks. I'm with a different therapist (the one I was "short" with a while back, but it was all good), so she has her own way of working with me. she has me gradually work up to the speed she wants me to walk at. 1.3, no problem. 1.5, trotting along. 1.7 this is cake. then she hits 1.9. this is still slower than the speed I usually walk at but for some reason, the machine starts making a weird grinding noise that my body cannot handle. immediately, I go into "overload mode." my eyes close of the own free will, my face grimaces (it's ugly, too), my muscles start contorting. I start holding my breath involuntarily. I am still walking the treadmill, but I start wondering if I am going to pass out right there. my normal therapist sees this and asks if I am all right. I find I can't exactly form words to answer her, just parts of words, but I am able to convey to her that I am not exactly "all right." she reminds me to breathe and focus and comes over to lower the speed on the treadmill. as soon as she does, the noise goes away and my body immediately relaxes. an assistant is with her. Stacy (my therapist) asks again if I am all right and I tell her that the machine was making a weird noise. before I can say anything, the assistant asks me, "oh, you were afraid of it?" in a kind of nurturing, yet condescending voice. What?
Stacy had to go back to work with her patient a moment, and the assistant had gone with her. I was alone on the treadmill, inwardly shaking my head (had I actually shook my head, I'd have been quite dizzy). did she actually say that? it was just a bizarre question...
when Stacy came back to check on me, I had to tell her, "I'm better now. the sound apparently set me off or something. she," making crazy eyes at the assistant, "thought I was afraid of the noise."
while Stacy and Lauren (the therapist I am working with) talked about how the machine probably needs to be serviced, and that's where the noise came from, I didn't get the validation I had hoped for, like, "wow, what a crazy-assed, stupid, ignorant, uninformed, jerky, dumbass response to someone who has neurological responses to vertigo! I'm sorry you had to deal with that. I'll let her know." or something to that effect.
maybe I'm a little sensitive.
maybe it's just that from working with and for people my whole life, I am hyper-aware of what comes out of my mouth at all times when dealing with people at all times. I remember that they all have a story, a life, feelings, a family. I don't know why, at this stage of my life, I am still shocked and amazed when other people don't.
and this was nothing. seriously, nothing. I know it was nothing. she was just an idiot. ok, not an idiot, she just was clueless.
but, it's the tip of something much, much bigger that I have been holding onto and I am damned near ready to burst.
another post...perhaps another blog...
Friday, March 9, 2012
my eyes and the problems they cause me
my vision therapy evaluation, such as it was, has came and gone.
I guess you can gather from that statement that it was quite short. far shorter than I thought it would be. initially, they told me that they set aside 3 days for the exam; two days for the testing and a third day for the doctor to go over the results.
they didn't count on me. always the exception. great.
sometimes it's a good thing to be done with tests quickly. this was not one of these times.
the evaluator was simply unable to perform more than two or three tests with me. why? the tests require one to have the ability to see in 3-D. because I have the crossed eye, I simply lack this ability. completely. I've never been able to "enjoy" a 3-D book or movie. no biggie. it's not like a handicap or anything. it does impact my vision in other ways, like depth perception (learning parallel parking was a nightmare!), but, still, this is not a big deal in my life. since I was born this way, my brain has learned to compensate and I move about in my flat little world.
however, it did bring the testing to a screeching halt. so, day one of testing was compacted into about 30 minutes. day two of testing turned into me talking to the doctor about day one and playing around a little bit with some prisms. there was no need for day three.
so, the doctor basically told me that I have three options as far as vision therapy goes. option one is to get surgery to fix my eye. he doesn't do that, but he could recommend someone who does. then, I would get therapy to go along with the surgery. I wasn't too keen on option one. I like my eye. I don't want to take chances with my eyesight. I don't know anyone who had success with this. In fact, I know people who had this surgery and had their eyes be worse off afterwards. I just read this article about the surgery and my stomach has not stopped lurching since (and this is just the facts, not any horror stories whatsoever):
Eye muscle repair So, I think option one is out. I've lived with a crossed eye for 44 years. I think I can live with it for another 44-whatever.
option two is to do nothing at all. I kind of feel that this is not an option, either. very often, I find myself hitting walls in balance therapy (not literally!) because the therapists are telling me that certain things I need to work on fall under the auspices of vision therapy. ok, vision therapist, therapize me!
option three, then, is to come to him for vision therapy. and that means many things. working with prisms to try to straighten the eye (if we decide to go that route). I did tell the doctor that, while it would be nice to learn to park without hitting other cars and objects and to go through fast food drive-ins without taking my side mirrors off (ok, so I haven't completely learned to compensate with my lack of depth perception!), correcting my crossed eye isn't as important to me as addressing the real reason I came to him in the first place; to desensitize me from the things that make me dizzy. flashing lights. sudden objects in my visual field. busy stimulating environments. can he help fix those? it was a little difficult to get him on track there, but he seemed to be saying yes, he could. I mean, he was the guy my neurologist referred me to in the first place. I have to believe he can help. he's the "eye guy..."
he sent me home with some insurance paperwork to sign and return and had me talk to the therapist to set up my first appointment after I confirmed that my insurance covered his services. I have to admit a feeling of leeriness. it's a money thing, and I hope he knows what he is doing. something just feels...odd...maybe it's just change. I do have a hard time trusting people. I guess I'll give it a go and see what happens. first appointment in a few weeks.
I guess you can gather from that statement that it was quite short. far shorter than I thought it would be. initially, they told me that they set aside 3 days for the exam; two days for the testing and a third day for the doctor to go over the results.
they didn't count on me. always the exception. great.
sometimes it's a good thing to be done with tests quickly. this was not one of these times.
the evaluator was simply unable to perform more than two or three tests with me. why? the tests require one to have the ability to see in 3-D. because I have the crossed eye, I simply lack this ability. completely. I've never been able to "enjoy" a 3-D book or movie. no biggie. it's not like a handicap or anything. it does impact my vision in other ways, like depth perception (learning parallel parking was a nightmare!), but, still, this is not a big deal in my life. since I was born this way, my brain has learned to compensate and I move about in my flat little world.
however, it did bring the testing to a screeching halt. so, day one of testing was compacted into about 30 minutes. day two of testing turned into me talking to the doctor about day one and playing around a little bit with some prisms. there was no need for day three.
so, the doctor basically told me that I have three options as far as vision therapy goes. option one is to get surgery to fix my eye. he doesn't do that, but he could recommend someone who does. then, I would get therapy to go along with the surgery. I wasn't too keen on option one. I like my eye. I don't want to take chances with my eyesight. I don't know anyone who had success with this. In fact, I know people who had this surgery and had their eyes be worse off afterwards. I just read this article about the surgery and my stomach has not stopped lurching since (and this is just the facts, not any horror stories whatsoever):
Eye muscle repair So, I think option one is out. I've lived with a crossed eye for 44 years. I think I can live with it for another 44-whatever.
option two is to do nothing at all. I kind of feel that this is not an option, either. very often, I find myself hitting walls in balance therapy (not literally!) because the therapists are telling me that certain things I need to work on fall under the auspices of vision therapy. ok, vision therapist, therapize me!
option three, then, is to come to him for vision therapy. and that means many things. working with prisms to try to straighten the eye (if we decide to go that route). I did tell the doctor that, while it would be nice to learn to park without hitting other cars and objects and to go through fast food drive-ins without taking my side mirrors off (ok, so I haven't completely learned to compensate with my lack of depth perception!), correcting my crossed eye isn't as important to me as addressing the real reason I came to him in the first place; to desensitize me from the things that make me dizzy. flashing lights. sudden objects in my visual field. busy stimulating environments. can he help fix those? it was a little difficult to get him on track there, but he seemed to be saying yes, he could. I mean, he was the guy my neurologist referred me to in the first place. I have to believe he can help. he's the "eye guy..."
he sent me home with some insurance paperwork to sign and return and had me talk to the therapist to set up my first appointment after I confirmed that my insurance covered his services. I have to admit a feeling of leeriness. it's a money thing, and I hope he knows what he is doing. something just feels...odd...maybe it's just change. I do have a hard time trusting people. I guess I'll give it a go and see what happens. first appointment in a few weeks.
Tuesday, March 6, 2012
strength training and inner strength
so now my balance therapy has branched out.
when I go for my vestibular exercise, I get strength training. it's way harder than I thought it would be.
I squat, I lift dumbbells, I use weight machines, I do resistance exercises.
I need this stuff.
I'm glad I made the decision to ask for this. even when I am sore.
I'm also glad I made the decision to do this at the same place where I get my balance therapy, even though the orthopedist told me to go to a facility that specializes in arthritis.
fact is, I get dizzy when I work out. so we have to deal with that. the other place may or may not have been equipped for that. besides, doesn't it make sense to have the same therapist track your progress? and, since my neurologist is treating both my fibromyalgia and my vestibular dysfunction, he can prescribe as much physical therapy as I need. not have me running all over the place.
when I'm lucky, I also get heat treatments, too. I say "lucky" because only one therapist seems to give them to me. not sure why. I'm not the kind to ask for stuff like that. I know I'm the patient, and it's my treatment, so I shouldn't feel that way. but I do. I feel that it is a luxury, like someone getting a poolside massage. stupid, I know.
I feel this way about every aspect of my treatment lately...that I am on an extended vacation. and I know why.
my girlfriend calls it, "people taking my inventory." everybody does it. I'm sick of it. for example, my 9-year-old ASKING ME WHAT I DO ALL DAY! (seriously??)
I've already mentioned my mom. she goes in spurts. I'm just waiting til the next one.
I'm the worst offender, though. because I know I'm not doing as much as I should. as much as I want to be doing. and then other people's criticisms ring in my ears and I'm paralyzed. a self-fulfilling prophecy. I'm trying to work on it in talk therapy, but, until I come to some conclusion, health-wise, I don't know how far I will come.
it is hard for me to make a life for myself at home. harder still when I get dizzy doing things that used to make me happy, like dancing, or taking long walks or driving.
I'm trying to push myself to do the things I used to do, because I'm unwilling to give up at 44 years old. I used to live in a black hole. I'll be damned if I'm falling back inside of there.
yes, for my kids, always for my kids, but for once, a tiny part of me says for ME, too. (I can't tell you how my stomach churns when I think it...but I'm trying to believe it, anyway)
so, after I write this, I WILL get off the couch and practice SOMETHING. some b's. some squats. play on the Wii. I MUST motivate myself to move and, as much as I think I can't, I MUST move my head around. I KNOW it will make me dizzy. that is the point. make myself a little dizzy each day and maybe I will be less dizzy someday...
when I go for my vestibular exercise, I get strength training. it's way harder than I thought it would be.
I squat, I lift dumbbells, I use weight machines, I do resistance exercises.
I need this stuff.
I'm glad I made the decision to ask for this. even when I am sore.
I'm also glad I made the decision to do this at the same place where I get my balance therapy, even though the orthopedist told me to go to a facility that specializes in arthritis.
fact is, I get dizzy when I work out. so we have to deal with that. the other place may or may not have been equipped for that. besides, doesn't it make sense to have the same therapist track your progress? and, since my neurologist is treating both my fibromyalgia and my vestibular dysfunction, he can prescribe as much physical therapy as I need. not have me running all over the place.
when I'm lucky, I also get heat treatments, too. I say "lucky" because only one therapist seems to give them to me. not sure why. I'm not the kind to ask for stuff like that. I know I'm the patient, and it's my treatment, so I shouldn't feel that way. but I do. I feel that it is a luxury, like someone getting a poolside massage. stupid, I know.
I feel this way about every aspect of my treatment lately...that I am on an extended vacation. and I know why.
my girlfriend calls it, "people taking my inventory." everybody does it. I'm sick of it. for example, my 9-year-old ASKING ME WHAT I DO ALL DAY! (seriously??)
I've already mentioned my mom. she goes in spurts. I'm just waiting til the next one.
I'm the worst offender, though. because I know I'm not doing as much as I should. as much as I want to be doing. and then other people's criticisms ring in my ears and I'm paralyzed. a self-fulfilling prophecy. I'm trying to work on it in talk therapy, but, until I come to some conclusion, health-wise, I don't know how far I will come.
it is hard for me to make a life for myself at home. harder still when I get dizzy doing things that used to make me happy, like dancing, or taking long walks or driving.
I'm trying to push myself to do the things I used to do, because I'm unwilling to give up at 44 years old. I used to live in a black hole. I'll be damned if I'm falling back inside of there.
yes, for my kids, always for my kids, but for once, a tiny part of me says for ME, too. (I can't tell you how my stomach churns when I think it...but I'm trying to believe it, anyway)
so, after I write this, I WILL get off the couch and practice SOMETHING. some b's. some squats. play on the Wii. I MUST motivate myself to move and, as much as I think I can't, I MUST move my head around. I KNOW it will make me dizzy. that is the point. make myself a little dizzy each day and maybe I will be less dizzy someday...
Friday, February 17, 2012
some concerns
I've been in vestibular therapy for several months now and here's where I'm at.
There are days when I seem to do the exercises pretty well. And there are days, like yesterday, when a simple walk on the treadmill barely more than ONE MILE PER HOUR can make me go into horrible spins.
It's frustrating and confusing.
As usual, the staff are extremely supportive and encouraging, so that helps. Still. I can't help but wonder. I am going to be among those that cannot be "cured" because it has been too long since the initial damage to my vestibular system? I know that even if this is true, this time won't have been wasted since I've learned so much here, but I wonder if some day this "truth" will become a "reality." This scares me.
I also wonder if it is possible that there hasn't been enough done to discover the underlying cause to the dizziness, too, and this frustrates me as well. We are guessing that the cause is labrynthitis because an ENT said so when I first got sick, but what if HE was wrong? I mean, does it really make sense that I would remain dizzy all these years from ONE case of labrynthitis? I can't find much to support that truth.
At the suggestion of the neurologist, I saw the vision therapist. He decided I would be a good candidate for therapy. He said it *might* help with the balance issues; it often does in cases like mine. He actually was very optimistic. Cautiously optimistic. I guess he has to be. There is a lengthy evaluation process, so the therapy won't begin for a while.
I also talked to my "main" physical therapist about adding strength training to my balance therapy. I also suffer from fibromyalgia and have been having it rough. I was hesitant about going somewhere else for physical therapy, considering my balance issues. She thought I was being smart (I did, too!) and said she'd talk with the doctor.
After some hard thinking, I've decided I have to do a couple of things, even though it's kind of "admitting" my state of disability...which...apparently is a bad thing to do. Anyway, I am in the process of obtaining Medicaid taxi in my area so I can alleviate my partner from having to drive me from appointment to appointment, and so I can make more appointments during the week if I want to. I also am applying for SCAT (Suffolk County Accessible Transit). It is a paratransit service that will provide door-to-door pick-up for rides around my county. I've had this service before; in Florida, and when I lived in Nassau County and, while it is not the ideal way to get around, it can be very helpful and is much more cost-efficient than a taxi. I also gave my doctor paperwork to fill out to have my student loan forgiven. This was a killer for me. Since I graduated almost 13 years ago, I think I've been able to work a combined total 4 years...IF that. What a disaster. No one plans for things like this. I certainly didn't. And now, I keep having my loan put into forbearance and deferment over and over again because I certainly can't make payments while I'm living off of social security disability checks. Meanwhile, the interest has ballooned my loan to well over $40,000. It may as well be a million.
While these things are, in and of themselves, quite depressing, I'm dealing pretty well most of the time.
I did, however, have to field this conversation with my mother yesterday, and it threw me for a loop:
MOM: "I saw something the other day about domestic violence. When you are ready to go back to work, I think that would be a good field for you to go into, considering all you have been through..."
ME: "I definitely think I would volunteer in that field, but, considering everything I've had to do for Tara (my adult autistic daughter), I know I that I would go back to what I HAD been doing."
MOM: "What you HAD been doing What? Sitting on your ass?"
Now my stomach tightens. I see red. I try not to throw the phone through my glass doors.
ME: "I said what I HAD been doing. You know perfectly well what I mean. Working with developmentally disabled individuals. You know, when you get like this, I don't want to talk with you anymore..."
MOM: "Oh, I didn't hear you..."
ME: "You heard me perfectly well. You even repeated exactly what I said. What I HAD been doing. Not what I HAVE been doing..."
The thing is, my mother sees my not working as a FAILURE of some sort. Same for my not driving.
It's hard enough for me. It's absolutely TORTUROUS when I don't have the support of someone so important to me.
Does she think I don't WANT to work? Does anyone think I WANT to be dizzy? To have my thoughts scrambled constantly? To fall out of nowhere? To be a shadow of my former self? To be dependent on other people?
I used to be Supermom! At one time, I worked full-time and went for my Masters degree and was in the Community Choir and volunteered for my Church while raising two kids.
This illness has invaded my head and my body in such a way that I can't think and don't know which way is up. I don't want this. AND I AM DOING EVERYTHING IN MY POWER TO TRY AND FIX THIS!
However...it has been so many years, with so many WRONG treatments, WRONG medications and just so much time has passed. What if it is just too late?
There are days when I seem to do the exercises pretty well. And there are days, like yesterday, when a simple walk on the treadmill barely more than ONE MILE PER HOUR can make me go into horrible spins.
It's frustrating and confusing.
As usual, the staff are extremely supportive and encouraging, so that helps. Still. I can't help but wonder. I am going to be among those that cannot be "cured" because it has been too long since the initial damage to my vestibular system? I know that even if this is true, this time won't have been wasted since I've learned so much here, but I wonder if some day this "truth" will become a "reality." This scares me.
I also wonder if it is possible that there hasn't been enough done to discover the underlying cause to the dizziness, too, and this frustrates me as well. We are guessing that the cause is labrynthitis because an ENT said so when I first got sick, but what if HE was wrong? I mean, does it really make sense that I would remain dizzy all these years from ONE case of labrynthitis? I can't find much to support that truth.
At the suggestion of the neurologist, I saw the vision therapist. He decided I would be a good candidate for therapy. He said it *might* help with the balance issues; it often does in cases like mine. He actually was very optimistic. Cautiously optimistic. I guess he has to be. There is a lengthy evaluation process, so the therapy won't begin for a while.
I also talked to my "main" physical therapist about adding strength training to my balance therapy. I also suffer from fibromyalgia and have been having it rough. I was hesitant about going somewhere else for physical therapy, considering my balance issues. She thought I was being smart (I did, too!) and said she'd talk with the doctor.
After some hard thinking, I've decided I have to do a couple of things, even though it's kind of "admitting" my state of disability...which...apparently is a bad thing to do. Anyway, I am in the process of obtaining Medicaid taxi in my area so I can alleviate my partner from having to drive me from appointment to appointment, and so I can make more appointments during the week if I want to. I also am applying for SCAT (Suffolk County Accessible Transit). It is a paratransit service that will provide door-to-door pick-up for rides around my county. I've had this service before; in Florida, and when I lived in Nassau County and, while it is not the ideal way to get around, it can be very helpful and is much more cost-efficient than a taxi. I also gave my doctor paperwork to fill out to have my student loan forgiven. This was a killer for me. Since I graduated almost 13 years ago, I think I've been able to work a combined total 4 years...IF that. What a disaster. No one plans for things like this. I certainly didn't. And now, I keep having my loan put into forbearance and deferment over and over again because I certainly can't make payments while I'm living off of social security disability checks. Meanwhile, the interest has ballooned my loan to well over $40,000. It may as well be a million.
While these things are, in and of themselves, quite depressing, I'm dealing pretty well most of the time.
I did, however, have to field this conversation with my mother yesterday, and it threw me for a loop:
MOM: "I saw something the other day about domestic violence. When you are ready to go back to work, I think that would be a good field for you to go into, considering all you have been through..."
ME: "I definitely think I would volunteer in that field, but, considering everything I've had to do for Tara (my adult autistic daughter), I know I that I would go back to what I HAD been doing."
MOM: "What you HAD been doing What? Sitting on your ass?"
Now my stomach tightens. I see red. I try not to throw the phone through my glass doors.
ME: "I said what I HAD been doing. You know perfectly well what I mean. Working with developmentally disabled individuals. You know, when you get like this, I don't want to talk with you anymore..."
MOM: "Oh, I didn't hear you..."
ME: "You heard me perfectly well. You even repeated exactly what I said. What I HAD been doing. Not what I HAVE been doing..."
The thing is, my mother sees my not working as a FAILURE of some sort. Same for my not driving.
It's hard enough for me. It's absolutely TORTUROUS when I don't have the support of someone so important to me.
Does she think I don't WANT to work? Does anyone think I WANT to be dizzy? To have my thoughts scrambled constantly? To fall out of nowhere? To be a shadow of my former self? To be dependent on other people?
I used to be Supermom! At one time, I worked full-time and went for my Masters degree and was in the Community Choir and volunteered for my Church while raising two kids.
This illness has invaded my head and my body in such a way that I can't think and don't know which way is up. I don't want this. AND I AM DOING EVERYTHING IN MY POWER TO TRY AND FIX THIS!
However...it has been so many years, with so many WRONG treatments, WRONG medications and just so much time has passed. What if it is just too late?
Wednesday, February 1, 2012
My New "B" and Other Therapeutic Torture
The other day, I was stepped up to a different "B" in therapy. For those of you who have no idea what I'm talking about, I'll explain (and, hopefully, provide a visual aide if I can figure out this blogging thing right).
You see, when I started balance therapy, among many of the exercises I have to do, one of them is the "dreaded B." Basically, you're given a point to look at (in this case a letter "B"), and made to do things that normally evoke a dizzy response while focusing on this damned letter. For example, moving your head from side to side, or up and down. The basic "B" looks like this:
You see, when I started balance therapy, among many of the exercises I have to do, one of them is the "dreaded B." Basically, you're given a point to look at (in this case a letter "B"), and made to do things that normally evoke a dizzy response while focusing on this damned letter. For example, moving your head from side to side, or up and down. The basic "B" looks like this:
I had worked on the simple "B" for a while until I, apparently, mastered it, (got less dizzy while working with it), and then I graduated to this "B":
This "B" was supposed to be torturous, apparently. When different therapists would see what "B" I was working on, they'd say stuff to me like, "Oh, God, poor you." Or, "That one makes me dizzy." But, for some reason, it didn't evoke any more of a response from me than a regular "B." My guess is because of my crossed eye and my inability to see things 3-D like the rest of you people. Since it's black-and-white, maybe it's not such a challenge for me? I don't know...
Anyway, so I had my setback, and I went back to the simple "B" for a little while. I also was working on some "B's on sticks." Yep, that is just what is sounds like.
I had to do some eye exercises and tracking with these lovely letters. The purpose of these exercises were to try to strengthen my eyes, try to get them to work together, try to increase my peripheral vision and also to desensitize my responses to movement. I am sure I will be doing lots more of this in visual therapy (I go for an evaluation February 6).
So, I saw my regular therapist on Monday and she re-assessed my progress. She decided I could "graduate" again to this wonderful "B":
Yes, it's a checkerboard. This one is supposed to be between a regular "B" and the crazy black-and-white one. But for me this thing's a killer. I can barely get through my exercises with it. Hell, I can barely look at it right now on this screen! It's that disturbing!
So, I do these lovely eye things in addition to any other physical torture they decide I need to endure that day. It may be the treadmill or the stationary bike (physical exercise is important to everyone, but for us dizzy's, who tend to shy away from it, it is even more so...the benefits are enormous), standing on a wobbly board, walking around cones, balancing myself on a rocking board, standing on a cushion (simulating uneven surface), walking around while turning my head, throwing a ball, and on and on.
More days than not, I leave there telling my partner, "they beat me up in there." But I know it's for a reason.
I laugh and call it "therapeutic torture". I'm trying to stay positive because it's the only way to stay out of the pity pot. And because I feel I owe it to these therapists, to my partner, and especially to my kids and, yeah, to myself, to keep at this and try to get better.
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