So I got up this morning, and at 8:30 started phone calling doctors again. I needed to call one about the blood work order I never received (they were supposed to mail it to me) and another because I just cannot handle how bad these medication side effects have gotten and I cant be drinking coffee just to handle getting out of bed to make my child breakfast.
Called and left a msg for dr #2, and then called dr #1 and got placed on hold. While on hold, Dr #2 called back, so I switched lines to talk to him. By the time I got done talking with him, I switched back to the line I was on hold on - and they were just picking up. So, that was a blessing because I only spent about 20 mins of agony on doctor phone calls. I've had much, much worse days than that!
Dr #1 faxed the blood work to Rob. I got a friend to take me to get it done on Wed so that I dont have to wait until the weekend. Dr #2 wants me to decrease my meds again and follow up with him on Thurs via phone.
So far, no change from reducing the medications. I'm worried my eyes will get even worse now though. Still was "zonked" all day, and literally took a 5 hour nap with my child. No, I'm not bragging. Because I didnt feel rested after. I felt like I had just slept with an elephant sitting on my face. Yes, headache. All day. Ouch.
I coffee'd up though, and got my work done for the day, tonight. I officially asked for a reduction in my work load semi-permanently until this gets worked out better. I just couldn't handle the days where I was getting tons of work anymore. As it is, it's hard for me to get through 30 minutes of dictation, and 40-45 minutes is pushing it (where I set my new daily "limit"). They are very understanding and sweet about it - but, it doesn't make me feel any better. It's not the kind of work ethic I have and it kills me to step down from my responsibilities.
I've been trying to spend more time meditating on the rosary when I get a chance, like right after Joey goes down for a nap and before I fall asleep too. Gives me a little mental peace, at least.
I've also been talking to alot of people with PTC/IH online and getting different perspectives on alot of things I have been wondering about, so its good to talk to people who have BTDT. I also talked to people who have been pregnant with IH and who are pregnant without being in "remission" of the disease, which gives me some peace of mind, too. I just don't like the scare tactics doctors use. And, like I was telling a friend on gtalk today, TO ME, getting pregnant isn't something I control. It's like telling me not to ovulate or get my period. I dont have control over those things. Yeah, I could take a little bit more control of it right now and actually chart, but I just don't need another thing to keep track of right now. So while I really have no desire to be pregnant right now and do agree with the doctors on the premise that it isnt a good idea until my eyes arent actively getting worse, I am having more and more peace knowing that it's in God's hands, not mine.
I've got some funny recent photos of Joey that I need to upload, and I will, as soon as I get the energy to do it. He's a funny kid, even if he does absolutely drive me insane most of the time lately.
In happy non-health related news, Joey chose a bedset for his new room for when we do move. His choice: Robots. Cute stuff!
I desperately want to start packing, but even thinking of lifting a box makes my joints hurt. Maybe this weekend when Rob can help. Looking forward to CST on wednesday, if anything just for more headache relief.
Monday, January 25, 2010
Saturday, January 23, 2010
PTC rant
Okay, this is going to be quite a rant, and include not nice stuff :P so shield your eyes. And if anyone comments on typos, prepare to wage war. I'm not in the mood.
I was diagnosed with PTC beginning of December after having some vision problems just before thanksgiving, along with the worst headaches I've ever had in my life. Ever since then, its just been a downhill frustrating road :( I'm losing vision daily, I feel AWFUL mostly because of medication side effects and I am just so incredibly frustrated about everything and scared about the possibility of brain surgery that I just don't know where to go from here except pray. For a while, I stopped "complaining" to my friends about how I was feeling because, every time I got a response I literally would feel like I would want to crawl in a hole and cry. so for now, this is a good alternative. You all voluntarily choose to read this bull of mine.
But I feel AWFUL. The medication makes me want to sleep all day. Except, when I do sleep, I feel worse and wake up more swollen and in more pain. I sleep HARD when I do sleep. So hard, that if I take a nap with my son on my arm, he will wake up, go potty, go get himself a snack and turn the tv on for who knows how long before I wake up and realize this has occurred. Thank goodness he has not wandered outside or something, but I still feel like an awful mama. The medicine sucks all the water out of my joints. So I feel like I have some sort of awful arthritis or half my bones are broken or something. They grind, click, it hurts. Even the little bones in my fingers and toes ache. I get this awful, awful, painful nerve pain in my feet and hands and on my face from the medicine. When it happens, you can see these small white things pulsing out on those areas. Freaky. I can barely walk anywhere without big cushy socks on, not even on carpet or in the house. It HURTs! I feel horribly dehydrated all of the time and I cant do anything about it. Eyes feel like sandpaper, as does my skin even with piles of corn-free lotion. My nails and hair is brittle and gross. And the nausea :(
I have a horrible headache almost all the time. Now, I've had some awful headaches in my life before, but nothing compares to this. I have this horrible pressure around my face/brain that I feel like something is going to explode and everything will shoot out my ears at any moment or something. You know that feeling you get when you hang upside down from the monkey bars? blood rushing to your head? Thats how i feel. All the time. especially if I lay down. And then I get the added joy of hearing my spinal fluid swoosh around my brain.
My vision has gotten so bad that I cant tell when someone is standing right next to me and going down stairs is ridiculous because I cant see in my downward peripheral vision. If I am using a grocery cart at the store, I run into stuff, or I run into people. Or, I inadvertently think I didnt see a car coming and step out in the road to cross while holding Joey's hand, and lo and behold, there WAS a car coming. Makes me feel like such a bad mama :( I cant pick him up for longer than a few seconds or my face starts to swell around my head and my eyes because of the shift of spinal fluid from the pressure or something. It sucks. It just really really sucks. I just find myself breaking down into tears over the simplest, stupidest things because I am just so frustrated that it has become like this for me. I know I cant control it, but that does not make the reality of dealing with it any better. I can read okay if I am looking straight ahead, and my head is even with what I am reading. Reading the computer is OK. Books and paper gets more challenging because I have to turn it just right to see it. My eyes go "blind" for less than a min a few times a day, and sometimes go "gray" as in almost blind, but not completely black. It's scary. I'm afraid to go out on walks with Joey because what if my eyes go black and he runs out in the road or something!? He doesn't usually, but I think he realizes I cant see as much now, and he is using it to his "advantage". Sneaky kid.
He is, however, very sweet to me. When I am having a horrible day, as in I feel so bad I just want to sit and cry because nothing is helping, he gets out his doctor kit, tells me to take off my glasses, and then looks at my eyes. He takes my blood pressure, and then my temperature, and follows it all up by giving me 50 million shots all over my body until I start to laugh. If I dont laugh, he starts over at looking at my eyes again. :)
I did try cranial sacral therapy last week, and it helped relieve some of the painful symptoms. Headache, pressure. Really weird the next day, I had a headache, and my right eye started pouring water out. As someone who has been chronically dehydrated from the medications since I was diagnosed with this, this was really an unusual event. Even actual crying doesnt produce much tears. So I am hoping that this opened something up and was helping. But, by day 3? I was back to feeling bad, and getting worse at every moment just as before. It's stupid that insurance will pay an assload of money for me to see Mr. Fancy Pants Mayo Clinic Doctor that literally must charge a hundred dollars a minute, yet something that gets me relief isnt covered. He did teach Rob some stuff to help, but it hasn't been *too* helpful, though it does provide some short relief.
I feel like the worst employee ever when I have to take time off because my eyes keep going gray or my head is hurting so bad I can barely move. They are understanding about it, but still, that is not the kind of employee I am and I cant stand to do that. I *need* to work because we NEED the money.
The doctors say "weight loss may help". So, I went on an all raw diet -- the only diet in my past that I have EVER lost weight on. Even on this, I have not lost weight. Or if I am losing weight, my body is producing spinal fluid so quickly that its covering it up on the scale for me to see. I have lost maybe 5 lbs overall, but that is NOTHING in the broad scope of things. And seriously, how am I supposed to exercise like this? I can just see me on a treadmill, black out, and splat. Or trying to rollerblade, with my new balance issues (maybe from the spinal fluid/ear pressure), it's impossible. Which makes me so sad :( because I was so happy to get those rollerblades for christmas. Mucky muck muck. I hate how all doctors assume that since I'm fat, I dont know how to eat healthy and I must eat mcdonalds for every meal. Seriously, suggestions like "cut your milk from whole milk to fat free milk" or "make your lunch at home instead of mcdonalds" are really counterproductive and make me want to punch doctors in the face. I probably eat healthier on a regular basis than THEY DO. Skinny fuckers. Also they say the weight part of it is a large amount of weight gained recently, which is not the case for me. Aside from my puketastic pregnancy and weight fluctuations then (almost THREE YEARS AGO NOW), I have been this weight for years.
My hubby and I think there IS a vitamin A component for me, too, but we are not getting any real answers from the doctors aside from that my level was high in the hospital but they dont think it is that. There's also a hormonal component for me, too, but the medical doctors seem to brush this off as being correlated even though from the reading I have done, it is very clearly correlated. I am being treated by another (more natural) doctor to try to fix some of the hormonal stuff though, so I am hoping that will have some effect too.
What really bugs me, is they dont really care what caused it. All they want to do is make sure I dont go blind. Which is all good and happy because I'd love to not go blind too, BUT it would make alot more sense to me to figure out what caused the freaking rare stupid syndrome and fix THAT and see if it is fixed that way.
If he is so convinced its weight, I asked him about surgery options for that. Seriously, not on my priorities to have bariatric surgery. but its better than brain surgery! And.. he says, not an option, because of recovery time. So, basically, short of becoming an anorexic or bulimic, I'm really not sure what else I can do. I am trying the best I can and that's that. I just want to know how he expects me to lose weight, when I have tried to lose weight for years without any luck, and now I have the additional complications of my vision, and all the horrible crap from this medicine?
Even worse are the bills we have been getting in the mail for all of the appointments and treatments and tests I've needed so far, and it just makes me sick. It makes me want to just stop going to all of them. I know I cant. But, it really does frustrate me. I resolved the other day that I'm going to let Rob open the medical bills for now as I cant take the stress.
The medicine is the most frustrating for me, because I feel like its a one step forward two steps back kind of thing. It reduces the amount of spinal fluid I have, and then my body ups production again, to meet up for this "excess" and so then, my body is producing the original amount + the amount that it was being reduced. And then the med is upped again, and the same thing happens = original amount + reduction 1 + reduction 2. Again, same thing = original amount + reduction 1 + reduction 2 + reduction 3. Long explanation, but if I came off the med now I'd be making nearly 3-4 times the amount I originally was. How is THAT productive? I refuse to be on this medicine long term, it is not a real solution to this. Not to mention that a normal side effect of this med after a few months of being on it is scary things like osteoporosis and kidney stones.
I also refuse to have PTC forever, as I really desire to have more children, and the idea of "avoiding pregnancy" for the next 15+ years of my life is insane and totally against my beliefs. Even now, I must admit I've stopped charting. I should be charting now more than ever, since I am SUPPOSED to be avoiding getting pregnant. But its just another thing and another stress and it hasnt been happening. The doctors can be real assholes about that too. Telling me if I were to accidently get pregnant its like an "instant miscarriage". For real!? that's awful :( But from my research, thats not the case. A whole other slew of horrible things can happen to me, like permanent blindness and a bunch of other stuff, but the instant miscarriage thing, an empty threat. Yeah, go ahead and think you're gonna threaten this catholic into using birth control... when you've told me yourself that BIRTH CONTROL CAN CAUSE THIS. Fuckers.
I do have to say I have very supportive loving friends and family and for that I am thankful for everything they do. <3 Even if it's just listening to me bitch or cry.
Anyway, I kind of feel like I am resolving in my head that shunt surgery may end up being my only option. I really don't know what to do. I dont want anyone with a knife anywhere near my brain, and from what I've read about shunts, I dont want one of them either. But, the alternative - being blind. Pretty sure I dont want that either. I'm already almost there and that is scary enough for me.
We are planning to move within the next month, to another unit in our same complex. I am scared, because we are giving 30 day notice and setting a move in date for the newer (bigger, and cheaper) unit, and I worry what my state of health will be like by then and if I will be able to follow through with the move or not. I know we have many friends that will help us if we need it, but I dont like to rely on other people 100 percent for these kind of things. Sigh.
And really. . . this doesnt even go into all of the health stuff with my hubby recently (and him having intracranial hypotension - opposite of what I have - from a spine leak from a lumbar puncture, fixed by a blood patch) and Joey's recent flu and pneumonia that was exhausting and taxing on our whole family in so many ways. Sigh.
God has a plan somewhere in all of this. . . :-/ I hope?
I was diagnosed with PTC beginning of December after having some vision problems just before thanksgiving, along with the worst headaches I've ever had in my life. Ever since then, its just been a downhill frustrating road :( I'm losing vision daily, I feel AWFUL mostly because of medication side effects and I am just so incredibly frustrated about everything and scared about the possibility of brain surgery that I just don't know where to go from here except pray. For a while, I stopped "complaining" to my friends about how I was feeling because, every time I got a response I literally would feel like I would want to crawl in a hole and cry. so for now, this is a good alternative. You all voluntarily choose to read this bull of mine.
But I feel AWFUL. The medication makes me want to sleep all day. Except, when I do sleep, I feel worse and wake up more swollen and in more pain. I sleep HARD when I do sleep. So hard, that if I take a nap with my son on my arm, he will wake up, go potty, go get himself a snack and turn the tv on for who knows how long before I wake up and realize this has occurred. Thank goodness he has not wandered outside or something, but I still feel like an awful mama. The medicine sucks all the water out of my joints. So I feel like I have some sort of awful arthritis or half my bones are broken or something. They grind, click, it hurts. Even the little bones in my fingers and toes ache. I get this awful, awful, painful nerve pain in my feet and hands and on my face from the medicine. When it happens, you can see these small white things pulsing out on those areas. Freaky. I can barely walk anywhere without big cushy socks on, not even on carpet or in the house. It HURTs! I feel horribly dehydrated all of the time and I cant do anything about it. Eyes feel like sandpaper, as does my skin even with piles of corn-free lotion. My nails and hair is brittle and gross. And the nausea :(
I have a horrible headache almost all the time. Now, I've had some awful headaches in my life before, but nothing compares to this. I have this horrible pressure around my face/brain that I feel like something is going to explode and everything will shoot out my ears at any moment or something. You know that feeling you get when you hang upside down from the monkey bars? blood rushing to your head? Thats how i feel. All the time. especially if I lay down. And then I get the added joy of hearing my spinal fluid swoosh around my brain.
My vision has gotten so bad that I cant tell when someone is standing right next to me and going down stairs is ridiculous because I cant see in my downward peripheral vision. If I am using a grocery cart at the store, I run into stuff, or I run into people. Or, I inadvertently think I didnt see a car coming and step out in the road to cross while holding Joey's hand, and lo and behold, there WAS a car coming. Makes me feel like such a bad mama :( I cant pick him up for longer than a few seconds or my face starts to swell around my head and my eyes because of the shift of spinal fluid from the pressure or something. It sucks. It just really really sucks. I just find myself breaking down into tears over the simplest, stupidest things because I am just so frustrated that it has become like this for me. I know I cant control it, but that does not make the reality of dealing with it any better. I can read okay if I am looking straight ahead, and my head is even with what I am reading. Reading the computer is OK. Books and paper gets more challenging because I have to turn it just right to see it. My eyes go "blind" for less than a min a few times a day, and sometimes go "gray" as in almost blind, but not completely black. It's scary. I'm afraid to go out on walks with Joey because what if my eyes go black and he runs out in the road or something!? He doesn't usually, but I think he realizes I cant see as much now, and he is using it to his "advantage". Sneaky kid.
He is, however, very sweet to me. When I am having a horrible day, as in I feel so bad I just want to sit and cry because nothing is helping, he gets out his doctor kit, tells me to take off my glasses, and then looks at my eyes. He takes my blood pressure, and then my temperature, and follows it all up by giving me 50 million shots all over my body until I start to laugh. If I dont laugh, he starts over at looking at my eyes again. :)
I did try cranial sacral therapy last week, and it helped relieve some of the painful symptoms. Headache, pressure. Really weird the next day, I had a headache, and my right eye started pouring water out. As someone who has been chronically dehydrated from the medications since I was diagnosed with this, this was really an unusual event. Even actual crying doesnt produce much tears. So I am hoping that this opened something up and was helping. But, by day 3? I was back to feeling bad, and getting worse at every moment just as before. It's stupid that insurance will pay an assload of money for me to see Mr. Fancy Pants Mayo Clinic Doctor that literally must charge a hundred dollars a minute, yet something that gets me relief isnt covered. He did teach Rob some stuff to help, but it hasn't been *too* helpful, though it does provide some short relief.
I feel like the worst employee ever when I have to take time off because my eyes keep going gray or my head is hurting so bad I can barely move. They are understanding about it, but still, that is not the kind of employee I am and I cant stand to do that. I *need* to work because we NEED the money.
The doctors say "weight loss may help". So, I went on an all raw diet -- the only diet in my past that I have EVER lost weight on. Even on this, I have not lost weight. Or if I am losing weight, my body is producing spinal fluid so quickly that its covering it up on the scale for me to see. I have lost maybe 5 lbs overall, but that is NOTHING in the broad scope of things. And seriously, how am I supposed to exercise like this? I can just see me on a treadmill, black out, and splat. Or trying to rollerblade, with my new balance issues (maybe from the spinal fluid/ear pressure), it's impossible. Which makes me so sad :( because I was so happy to get those rollerblades for christmas. Mucky muck muck. I hate how all doctors assume that since I'm fat, I dont know how to eat healthy and I must eat mcdonalds for every meal. Seriously, suggestions like "cut your milk from whole milk to fat free milk" or "make your lunch at home instead of mcdonalds" are really counterproductive and make me want to punch doctors in the face. I probably eat healthier on a regular basis than THEY DO. Skinny fuckers. Also they say the weight part of it is a large amount of weight gained recently, which is not the case for me. Aside from my puketastic pregnancy and weight fluctuations then (almost THREE YEARS AGO NOW), I have been this weight for years.
My hubby and I think there IS a vitamin A component for me, too, but we are not getting any real answers from the doctors aside from that my level was high in the hospital but they dont think it is that. There's also a hormonal component for me, too, but the medical doctors seem to brush this off as being correlated even though from the reading I have done, it is very clearly correlated. I am being treated by another (more natural) doctor to try to fix some of the hormonal stuff though, so I am hoping that will have some effect too.
What really bugs me, is they dont really care what caused it. All they want to do is make sure I dont go blind. Which is all good and happy because I'd love to not go blind too, BUT it would make alot more sense to me to figure out what caused the freaking rare stupid syndrome and fix THAT and see if it is fixed that way.
If he is so convinced its weight, I asked him about surgery options for that. Seriously, not on my priorities to have bariatric surgery. but its better than brain surgery! And.. he says, not an option, because of recovery time. So, basically, short of becoming an anorexic or bulimic, I'm really not sure what else I can do. I am trying the best I can and that's that. I just want to know how he expects me to lose weight, when I have tried to lose weight for years without any luck, and now I have the additional complications of my vision, and all the horrible crap from this medicine?
Even worse are the bills we have been getting in the mail for all of the appointments and treatments and tests I've needed so far, and it just makes me sick. It makes me want to just stop going to all of them. I know I cant. But, it really does frustrate me. I resolved the other day that I'm going to let Rob open the medical bills for now as I cant take the stress.
The medicine is the most frustrating for me, because I feel like its a one step forward two steps back kind of thing. It reduces the amount of spinal fluid I have, and then my body ups production again, to meet up for this "excess" and so then, my body is producing the original amount + the amount that it was being reduced. And then the med is upped again, and the same thing happens = original amount + reduction 1 + reduction 2. Again, same thing = original amount + reduction 1 + reduction 2 + reduction 3. Long explanation, but if I came off the med now I'd be making nearly 3-4 times the amount I originally was. How is THAT productive? I refuse to be on this medicine long term, it is not a real solution to this. Not to mention that a normal side effect of this med after a few months of being on it is scary things like osteoporosis and kidney stones.
I also refuse to have PTC forever, as I really desire to have more children, and the idea of "avoiding pregnancy" for the next 15+ years of my life is insane and totally against my beliefs. Even now, I must admit I've stopped charting. I should be charting now more than ever, since I am SUPPOSED to be avoiding getting pregnant. But its just another thing and another stress and it hasnt been happening. The doctors can be real assholes about that too. Telling me if I were to accidently get pregnant its like an "instant miscarriage". For real!? that's awful :( But from my research, thats not the case. A whole other slew of horrible things can happen to me, like permanent blindness and a bunch of other stuff, but the instant miscarriage thing, an empty threat. Yeah, go ahead and think you're gonna threaten this catholic into using birth control... when you've told me yourself that BIRTH CONTROL CAN CAUSE THIS. Fuckers.
I do have to say I have very supportive loving friends and family and for that I am thankful for everything they do. <3 Even if it's just listening to me bitch or cry.
Anyway, I kind of feel like I am resolving in my head that shunt surgery may end up being my only option. I really don't know what to do. I dont want anyone with a knife anywhere near my brain, and from what I've read about shunts, I dont want one of them either. But, the alternative - being blind. Pretty sure I dont want that either. I'm already almost there and that is scary enough for me.
We are planning to move within the next month, to another unit in our same complex. I am scared, because we are giving 30 day notice and setting a move in date for the newer (bigger, and cheaper) unit, and I worry what my state of health will be like by then and if I will be able to follow through with the move or not. I know we have many friends that will help us if we need it, but I dont like to rely on other people 100 percent for these kind of things. Sigh.
And really. . . this doesnt even go into all of the health stuff with my hubby recently (and him having intracranial hypotension - opposite of what I have - from a spine leak from a lumbar puncture, fixed by a blood patch) and Joey's recent flu and pneumonia that was exhausting and taxing on our whole family in so many ways. Sigh.
God has a plan somewhere in all of this. . . :-/ I hope?
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