Fantastic! The neurologist poked me and stared at me and then LISTENED to what I had to say. He agreed that I deserve to have the spinal fluid flow MRI and he's going to talk to my PCP and the Neurosurgeon about scheduling it with the other MRIs I have to have. He initially thought I had psuedotumor cerebri (good call, Chad!) but my optic nerves look fine, not swollen like they would be with psuedotumor. He said, "Sometimes someone's symptoms make us go, Aha! those symptoms lead us to XYZ diagnosis. But these symptoms and how they're presenting aren't as clear cut. It could be the Chiari, but it could also be something else."
Finally I feel like someone is willing to listen to me and try to figure this out, not leave me out here in limbo wondering if this is my lot in life and nothing will change it. When he asked if I knew the remedy to having Chiari, I said yes. Decompression surgery. He asked if I'm that eager to have brain surgery.
I told him no, I want to talk to a Chiari specialist and make sure this is what's causing my issues. But I also want an end to this daily suffering, and I want to halt any further nerve damage as quickly as possible. He looked surprised that I had a well-thought-out answer.
Long story short: the neurologist can't think of anything that these symptoms could be, other than Chiari, but he's not 100% sure it's the Chiari causing these symptoms, if that makes sense. He is going to coordinate with the neurosurgeon and get me the test I need to determine how bad, really, the Chiari is affecting me.
It's such a great weight off my shoulders. I feel like we have a direction now. Things are starting to move, oh so slowly, but they're MOVING.
Thanks to everyone who has been keeping me in their thoughts and prayers. Sometimes it's so lonely here I feel like I'm going to suffocate, but then I realize I'm NOT alone. I have friends out there rooting for me and it keeps me from going too insane. :)
Friday, August 17, 2012
Wednesday, August 8, 2012
my neurosurgeon...
...is obviously not the right doctor for me.
I finally had my neurosurgeon's appointment this morning after waiting seven weeks for someone to see me... and what a letdown it has been. She was so focused on calling me fat that she glossed over the Chiari. Yes, I have Chiari, but she thinks because it's only 5mm it's a "mild" case. When I told her I had been reading up on it and it's not the size that matters (heh) but the spinal fluid flow, she said I didn't present any symptoms of a spinal fluid blockage and I shouldn't be reading things on the internet because I might start thinking for myself. I told her I hadn't had a CINE MRI and she said she doesn't order those because insurance usually won't pay for them. The business of medicine strikes again!
She also said all of my symptoms except the headaches (tinnitus, sleep apnea, balance issues, aphasia, memory issues, pain/burning in my neck & shoulders, vertigo, and on and on...) are all because I'm SO FAT. And she wouldn't do surgery on me because I'm SO FAT it would GUARANTEE complications. And I should see a morbid obesity clinic because I'm SO FAT. And we need to check for heart disease and blood clots in my legs because I'M SO FAAAAAAT! And she wants to do an MRI of my neck to check for a syrinx that she doubts is there but I may not fit in the MRI tube (even though I already have) because I'm FAAAAAAAAAAAAAAAAAAAT. And if she DID have to do surgery, I wouldn't be able to lay on my stomach for long enough for her to do the surgery BECAUSE OF THE FAT!
Did I mention how disgustingly, massively, blubberwhaley I am according to this neurosurgeon? (For the record, yes, I'm overweight. I've always been overweight. Before the sudden uptick in symptoms, I had started walking every day, doing yoga, eating healthy, cutting back on medications I felt weren't necessary... I lost almost 15 pounds. Now I'm practically bedridden. How am I supposed to lose weight when standing up makes me dizzy and my vision go gray? We ordered a set of resistance bands so I could lay in bed and use them as I felt up to it. It's not like I go to McDonald's every day and lay on the couch covered in french fry crumbs! I still eat a gluten free diet and drink lots of water and cut soda out almost completely. But I don't have high blood pressure, high cholesterol, diabetes, thyroid problems, or any other "fat" diseases. The pain and headaches slowed me down, and I started gaining weight. The disease caused a lot of the fat, not the other way around.)
She ordered another MRI, doppler on my legs, and is sending me to the ophthalmologist because she "doesn't see any indication of double vision." Apparently me telling her I have double vision is lies all lies.
Phil wants me to give it a month with this neurosurgeon and see where this path leads. I want to smack her in her smug mouth and find a different doctor.
God, I'm so disappointed. I thought things were finally starting to look up.
I finally had my neurosurgeon's appointment this morning after waiting seven weeks for someone to see me... and what a letdown it has been. She was so focused on calling me fat that she glossed over the Chiari. Yes, I have Chiari, but she thinks because it's only 5mm it's a "mild" case. When I told her I had been reading up on it and it's not the size that matters (heh) but the spinal fluid flow, she said I didn't present any symptoms of a spinal fluid blockage and I shouldn't be reading things on the internet because I might start thinking for myself. I told her I hadn't had a CINE MRI and she said she doesn't order those because insurance usually won't pay for them. The business of medicine strikes again!
She also said all of my symptoms except the headaches (tinnitus, sleep apnea, balance issues, aphasia, memory issues, pain/burning in my neck & shoulders, vertigo, and on and on...) are all because I'm SO FAT. And she wouldn't do surgery on me because I'm SO FAT it would GUARANTEE complications. And I should see a morbid obesity clinic because I'm SO FAT. And we need to check for heart disease and blood clots in my legs because I'M SO FAAAAAAT! And she wants to do an MRI of my neck to check for a syrinx that she doubts is there but I may not fit in the MRI tube (even though I already have) because I'm FAAAAAAAAAAAAAAAAAAAT. And if she DID have to do surgery, I wouldn't be able to lay on my stomach for long enough for her to do the surgery BECAUSE OF THE FAT!
Did I mention how disgustingly, massively, blubberwhaley I am according to this neurosurgeon? (For the record, yes, I'm overweight. I've always been overweight. Before the sudden uptick in symptoms, I had started walking every day, doing yoga, eating healthy, cutting back on medications I felt weren't necessary... I lost almost 15 pounds. Now I'm practically bedridden. How am I supposed to lose weight when standing up makes me dizzy and my vision go gray? We ordered a set of resistance bands so I could lay in bed and use them as I felt up to it. It's not like I go to McDonald's every day and lay on the couch covered in french fry crumbs! I still eat a gluten free diet and drink lots of water and cut soda out almost completely. But I don't have high blood pressure, high cholesterol, diabetes, thyroid problems, or any other "fat" diseases. The pain and headaches slowed me down, and I started gaining weight. The disease caused a lot of the fat, not the other way around.)
She ordered another MRI, doppler on my legs, and is sending me to the ophthalmologist because she "doesn't see any indication of double vision." Apparently me telling her I have double vision is lies all lies.
Phil wants me to give it a month with this neurosurgeon and see where this path leads. I want to smack her in her smug mouth and find a different doctor.
God, I'm so disappointed. I thought things were finally starting to look up.
Monday, August 6, 2012
From the bed...
Doing better, emotionally. Between encouragement from unexpected sources to a neurosurgeon appointment this week, I no longer feel like I'm drowning. I've got a direction now and things to do to prepare. It feels good to know someone will finally talk to me.
That said... God, this pain is miserable. I made it through my sister's wedding ceremony but ended up leaving fairly quickly afterward. I was her maid of honor. I was so embarrassed about my limitations (wearing different shoes because my feet are so swollen, having to cling to the best man as we descended the stairs, and sitting during the ceremony instead of standing by her side) I tried to push myself harder than I should have. Luckily, Phil has been quite the mother-hen, keeping a pretty constant eye on me. He knows when I've had enough but lets me make the final decision about when to leave/what to do. He's usually right but I'm too stubborn to give up control of my life to this disease. The past two days I've been sleeping pretty constantly to recover from the wedding. That's not like me...
Tomorrow is an appointment with my PCP and the day after is the appointment with the neurosurgeon. Nervous does not even come close to how I feel. What if the NS doesn't believe me? Or dismisses my symptoms as something else? Or doesn't have any experience with Chiari? Or shifts me back to another doctor for whatever reason?
I would appreciate prayers, good thoughts, whatever you please, especially the morning of the 8th. Patience is not my strong suit and I don't know how much longer I can hold out.
That said... God, this pain is miserable. I made it through my sister's wedding ceremony but ended up leaving fairly quickly afterward. I was her maid of honor. I was so embarrassed about my limitations (wearing different shoes because my feet are so swollen, having to cling to the best man as we descended the stairs, and sitting during the ceremony instead of standing by her side) I tried to push myself harder than I should have. Luckily, Phil has been quite the mother-hen, keeping a pretty constant eye on me. He knows when I've had enough but lets me make the final decision about when to leave/what to do. He's usually right but I'm too stubborn to give up control of my life to this disease. The past two days I've been sleeping pretty constantly to recover from the wedding. That's not like me...
Tomorrow is an appointment with my PCP and the day after is the appointment with the neurosurgeon. Nervous does not even come close to how I feel. What if the NS doesn't believe me? Or dismisses my symptoms as something else? Or doesn't have any experience with Chiari? Or shifts me back to another doctor for whatever reason?
I would appreciate prayers, good thoughts, whatever you please, especially the morning of the 8th. Patience is not my strong suit and I don't know how much longer I can hold out.
Tuesday, July 31, 2012
History repeats...
I feel lost.
Things between my spouse and I are strained. He doesn't deserve this stress, but I don't deserve some of the things he's done either. We're at a crossroads and I seem to be making all the wrong decisions.
On the illness front: still sick, still waiting for some kind of monetary benefit from work, I finally have an appointment with a neurologist but A) it's not until August 31st, and B) it will likely be a waste of time because the treatment for my disease is surgery. The neurologist will likely refer me back to the neurosurgeon who originally rejected me and we'll start this whole carnival of the absurd all over again.
In the interest of honesty I will admit self-harm has been on my mind a lot lately. Back in my crazy past (right after the homelessness but before sobriety set in) I leaned on self-harm as a way to cope with things I couldn't handle on my own. I haven't consciously physically hurt myself since Montana, six, maybe seven years ago.
Now I'm dealing with feelings I haven't felt in ages. Depression, complete misery, uncertainty, fear, loneliness, anxiety, impatience. I want people to leave me alone and somehow at the same time I don't want to be left alone anymore. I am staring down the long month ahead until my neurologist appointment, wondering how I can mentally survive until then. The physical pain is bad, yeah, but the mental ramifications are killing me.
On top of it all, I'm the maid of honor in my sister's wedding next weekend. What a fucking joke. She is expecting me to stay the night with her the night before the wedding and then stay with my folks the night of the wedding (it's a campout on my parent's property). I keep trying to explain I can't sleep in a strange place - I can barely sleep in my own house and that's only because someone loaned us a recliner for me to sleep in. I can't stand upright for more than a few minutes - how long is her ceremony going to be? I have absolutely no desire to take away from the most important day in her life by passing out at the altar. I can't back out but I can't see a way through this that won't hurt me (physically) or my sister (feelings).
Life outside my illness is passing by so fast... Life in my painfully tiny world can't go fast enough. I am grieving for the life that I should have had. I may, someday, be able to get back there but I have a feeling this detour is going to be a long one.
Things between my spouse and I are strained. He doesn't deserve this stress, but I don't deserve some of the things he's done either. We're at a crossroads and I seem to be making all the wrong decisions.
On the illness front: still sick, still waiting for some kind of monetary benefit from work, I finally have an appointment with a neurologist but A) it's not until August 31st, and B) it will likely be a waste of time because the treatment for my disease is surgery. The neurologist will likely refer me back to the neurosurgeon who originally rejected me and we'll start this whole carnival of the absurd all over again.
In the interest of honesty I will admit self-harm has been on my mind a lot lately. Back in my crazy past (right after the homelessness but before sobriety set in) I leaned on self-harm as a way to cope with things I couldn't handle on my own. I haven't consciously physically hurt myself since Montana, six, maybe seven years ago.
Now I'm dealing with feelings I haven't felt in ages. Depression, complete misery, uncertainty, fear, loneliness, anxiety, impatience. I want people to leave me alone and somehow at the same time I don't want to be left alone anymore. I am staring down the long month ahead until my neurologist appointment, wondering how I can mentally survive until then. The physical pain is bad, yeah, but the mental ramifications are killing me.
On top of it all, I'm the maid of honor in my sister's wedding next weekend. What a fucking joke. She is expecting me to stay the night with her the night before the wedding and then stay with my folks the night of the wedding (it's a campout on my parent's property). I keep trying to explain I can't sleep in a strange place - I can barely sleep in my own house and that's only because someone loaned us a recliner for me to sleep in. I can't stand upright for more than a few minutes - how long is her ceremony going to be? I have absolutely no desire to take away from the most important day in her life by passing out at the altar. I can't back out but I can't see a way through this that won't hurt me (physically) or my sister (feelings).
Life outside my illness is passing by so fast... Life in my painfully tiny world can't go fast enough. I am grieving for the life that I should have had. I may, someday, be able to get back there but I have a feeling this detour is going to be a long one.
Sunday, July 22, 2012
28'ish days later
As it stands now, I am still sick. My job protection was one day from disappearing but I finally got my Primary Care Physician to fill out the paperwork (using the tried and true tactics of crying and hysteria). Five-to-ten days until I hear back whether or not I am eligible for short term disability. I haven't had a paycheck in four weeks and our savings is nearly exhausted.
I am still sick. I wake up with blurred vision and severe pain in my feet, hands, shoulders, head, joints, abdomen... During the day, every time I stretch, stand, laugh, cough, sneeze my head starts pounding and my vision goes gray for a few seconds. (Pretty much Gru's Rule Number Three: "You will not cry, or whine, or laugh, or giggle, or sneeze or barf or fart!")
My PCP has faxed my files to a neurologist at a headache clinic who may, MAY, be willing to take me on as a patient. If he does want me to be his patient, it can take another two or three weeks before an appointment will be available. If he doesn't want to see me, we may have to try to make an appointment with a Chiari specialist in Seattle.
Sigh.
I can't take this waiting. The stress of it is grabbing me by the ankles and dragging me into Depressionville. I feel worthless, useless. I see all my dreams slipping away from me. I'm afraid I'll never feel better. The thought of feeling this way for years, decades, scares me to death. The thought of having brain surgery scares me. The thought of dying scares me.
Even worse is the stress I'm putting on my poor husband. Phil is used to helping me with things around the house but not being responsible for EVERYTHING. He doesn't talk a lot about it but I can't help but feel it's wearing him down. (That and some personal issues we're going through.) He says this is his job, he signed up for this when he married me and no matter what he is going to be there to care for me. That makes me feel a curious mixture of relief and extreme guilt.
I just want someone in the medical community to hear my story. To believe me when I say I am SICK. To present a miracle solution that will allow me to get back to my life the way it was.
A miracle is all I ask for. That's not so hard, is it Universe?
I am still sick. I wake up with blurred vision and severe pain in my feet, hands, shoulders, head, joints, abdomen... During the day, every time I stretch, stand, laugh, cough, sneeze my head starts pounding and my vision goes gray for a few seconds. (Pretty much Gru's Rule Number Three: "You will not cry, or whine, or laugh, or giggle, or sneeze or barf or fart!")
My PCP has faxed my files to a neurologist at a headache clinic who may, MAY, be willing to take me on as a patient. If he does want me to be his patient, it can take another two or three weeks before an appointment will be available. If he doesn't want to see me, we may have to try to make an appointment with a Chiari specialist in Seattle.
Sigh.
I can't take this waiting. The stress of it is grabbing me by the ankles and dragging me into Depressionville. I feel worthless, useless. I see all my dreams slipping away from me. I'm afraid I'll never feel better. The thought of feeling this way for years, decades, scares me to death. The thought of having brain surgery scares me. The thought of dying scares me.
Even worse is the stress I'm putting on my poor husband. Phil is used to helping me with things around the house but not being responsible for EVERYTHING. He doesn't talk a lot about it but I can't help but feel it's wearing him down. (That and some personal issues we're going through.) He says this is his job, he signed up for this when he married me and no matter what he is going to be there to care for me. That makes me feel a curious mixture of relief and extreme guilt.
I just want someone in the medical community to hear my story. To believe me when I say I am SICK. To present a miracle solution that will allow me to get back to my life the way it was.
A miracle is all I ask for. That's not so hard, is it Universe?
Thursday, July 19, 2012
Nightmares.
Having such a hard time sleeping. Tossing and turning. I push the blankets aside and then...
...I am wandering from room to room, looking for somewhere to sleep. Each time I stop, I see a man in the doorway, all in shadows. I find the room where Phil is sleeping peacefully and think, "Finally! I can sleep now." As I settle down beside him, the shadow-man steps into the doorway. His outline is short, trenchcoaty, ominous. I can see a faint glint of light on his glasses. With Phil beside me I find my courage to confront him. "Hello? Who are you?" His answer is lost in a stutter that, for some reason, fills me with terror. I start yelling, "No! No! No!" I look down at Phil, begging him silently to wake me up...
..."It's okay, it's only a dream!" I wake up screaming no, no, no. Phil is gently shaking me, telling me it's okay.
I'm never sleeping again.
...I am wandering from room to room, looking for somewhere to sleep. Each time I stop, I see a man in the doorway, all in shadows. I find the room where Phil is sleeping peacefully and think, "Finally! I can sleep now." As I settle down beside him, the shadow-man steps into the doorway. His outline is short, trenchcoaty, ominous. I can see a faint glint of light on his glasses. With Phil beside me I find my courage to confront him. "Hello? Who are you?" His answer is lost in a stutter that, for some reason, fills me with terror. I start yelling, "No! No! No!" I look down at Phil, begging him silently to wake me up...
..."It's okay, it's only a dream!" I wake up screaming no, no, no. Phil is gently shaking me, telling me it's okay.
I'm never sleeping again.
Monday, July 16, 2012
Holding Pattern
It has been almost a month since I got sick. Well, sicker.
Try again.
It's been almost a month since I got so sick the urgent care doctor made me sign a promise not to drive or work until I got cleared by the neurosurgeon.
A month of waiting. A month of laying in bed, staring at the phone. A month of learning I have truly amazing, kindhearted, patient and loving friends and family. A month of frustration, not-so-surprising lows, self-discovery, arguments, irritation, gratitude, tears, attempts at patience, failure at being patient, love and grief.
A month of being sick. Doubled vision, fatigue, daily headaches, nausea, insomnia, mood swings, and swollen feet, hands, joints. Oh, and pain. Can't forget pain.
A month of wondering what I'm supposed to be learning from this. A month of wondering why me? A month of being bounced from doctor to doctor and a month of no doctor helping fix my poor, broken body. A month of being afraid that our money is going to run out before my short term disability kicks in. A month of wondering if it was a mistake to buy our house since I don't know when/if I will be able to work again.
A month of the Binding of Isaac, VideoGameCarnage, TheHeartless, MangaMinx, NorthernLion.
A month of painting, stripping, and repainting my nails.
What comes next? More waiting. More Isaac. More nail polish.
More waiting.
I'm so very tired of waiting.
Try again.
It's been almost a month since I got so sick the urgent care doctor made me sign a promise not to drive or work until I got cleared by the neurosurgeon.
A month of waiting. A month of laying in bed, staring at the phone. A month of learning I have truly amazing, kindhearted, patient and loving friends and family. A month of frustration, not-so-surprising lows, self-discovery, arguments, irritation, gratitude, tears, attempts at patience, failure at being patient, love and grief.
A month of being sick. Doubled vision, fatigue, daily headaches, nausea, insomnia, mood swings, and swollen feet, hands, joints. Oh, and pain. Can't forget pain.
A month of wondering what I'm supposed to be learning from this. A month of wondering why me? A month of being bounced from doctor to doctor and a month of no doctor helping fix my poor, broken body. A month of being afraid that our money is going to run out before my short term disability kicks in. A month of wondering if it was a mistake to buy our house since I don't know when/if I will be able to work again.
A month of the Binding of Isaac, VideoGameCarnage, TheHeartless, MangaMinx, NorthernLion.
A month of painting, stripping, and repainting my nails.
What comes next? More waiting. More Isaac. More nail polish.
More waiting.
I'm so very tired of waiting.
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