Putting my 5-year-old to bed tonight, I kissed her goodnight and she told me to lean down so that she could kiss my head. She gave me about 15 kisses all over and said "Mom, I'm sorry your head hurts, if it hurts." Broke.my.heart. I told her it does, but thanked her for the kisses and told her that it made me feel much better. She said, "It doesn't make it stop hurting, but it makes you happy, and it's enough to get you through the night and the day, the night and the day?" (As she's saying this, she's waving her hand back and forth...so grown up, lol.) So much wisdom in such a tiny body. This whole thing with me being sick has been really hard on her. She has a hard time with me not having the energy or not feeling well enough to do things with her, or just being cranky and irritable all the time. She's also really been challenging me lately, which is something that I am not sure if it is just her personality right now, or if it's her way of coping with what is going on?
I feel so guilty most days. I come home from work, where I have to put on a smile and act like everything is fine for 8 hours a day. Which in and of itself is exhausting. At that point, I'm so tired, achy, and headachy, that I just have no patience for anyone or anything. Sometimes I think I compartmentalize the pain while at work, because I know I just HAVE to get through the day. I notice the pain, but usually I can power through it. (Then there are days where I am melting out of my chair and the hours just can't pass fast enough.) When I get home all bets are off. Everything that was put off during the day hits me at once. I walk in the door and my poor family gets nothing but Oscar the Grouch out of me. In the moment, I feel so angry at them. Either they're too loud or they won't leave me alone or who knows what. And they should just KNOW better. They should KNOW to be quiet and KNOW to stay away from me because I'm cranky. (YEAH RIGHT! I've been gone all day, they want to see me!!) Then before I know it the kids go to bed and I have 5 minutes to myself and I think what am I doing wasting this precious time with them? They're only going to be young once and the days are flying by. I wonder what they must think of me as a mother? Do they think "I wish my mom didn't yell so much"? "I wish my mom wasn't sick all the time"? "I wish my mom would play with me more"? I have so much guilt. Not to sound cliche, but this illness causes such pain in my head, and the...well, let's call them "side effects," cause pain in my heart. My family is the collateral damage of all of this, and they are suffering too. Moments like tonight, tucking my sweet little girl into bed, remind me that my family may want to put me out of my misery some days (HA!), but they do still love me and realize that I'm suffering.
Now I do want to say, I don't mean for this to sound overly dramatic. I don't walk around with a giant cloud over my head wallowing in self pity. I have good days and bad days, and sometimes good stretches...or bad ones. It's not like I am completely unable to enjoy life or laugh or have fun. The thing is just that I never really feel totally like myself. I can't explain why, but I have become even more shy and self conscious than I already was. Then people point out to me that I don't seem like myself or that I look uncomfortable, or I must not feel good...and I feel even more uncomfortable. The most ironic thing about this is that I have an INVISIBLE illness. Anyone who doesn't know me has no clue that there is anything wrong with me. So what is there to be worried about?? I think part of it is my vision, I have trouble focusing on people's faces now without going cross-eyed, which is extremely embarrassing to me and causes me to avoid making eye contact whenever possible. The problem is that I am just too much inside my own head, and let's face it, there is no room for anything extra in there! Whatever breaking out of my shell I have done over the past 10 years or so, I've picked up the pieces and glued them back together and now I'm cowering at the bottom of my shell in the fetal position, hoping that no one notices me. LOL
I want to thank everyone who expressed interest in reading my blog. It means a lot to me that people care enough to read all of my rambling and to know the details of what I am dealing with. PTC/IIH is such a rare and unknown illness, I'm glad to know that I can help spread awareness of it. Thanks for reading! :-)
Monday, December 30, 2013
Sunday, December 29, 2013
It's About Time!
I've been wanting to start a blog for awhile now, for several reasons. To document this crazy journey that I am on so that I can remember the time frame and different tests and treatments, to give anyone who cares to read a glimpse of what my upside down life is like these days....and last but not least just to have something to write about again because I love writing! The blog is something I always seem to think about when I'm not able to write, such as in the shower or on my drive to work. Tonight I saw that a friend who was recently diagnosed with the same illness as me is writing a blog and I figured there is no time like the present! I wish I had done it at the beginning like she is doing. Better late than never though.
So just in case anyone is not clear, the illness that I have is called pseudo tumor cerebri, which literally translates to "false brain tumor". The newest and most politically correct term is idiopathic intracranial hypertension. (You'll probably see me use the abbreviations PTC and IIH for these names.) What all of these fancy medical terms mean is that for some unknown reason, my body is either producing too much or not re-absorbing my spinal fluid fast enough. The excess fluid in my skull causes unbelievable pressure on my brain (which is what a tumor would do, hence the term false tumor). As a result, I have daily headaches of varying degrees, and depending on how bad the pressure is, my optic nerves swell and cause me to have blurry or double vision. (More on all of this fun stuff later.)
So now the question is...where to begin with this story? Most likely it will turn into a jumbled mess as bits and pieces come to me, so I apologize in advance if I make no sense.
Just for the fun of it, I feel like talking about the drug cocktail that I take on a daily basis. I carry a small pharmacy in my purse. I started with Diamox, a drug that decreases production of cerebrospinal fluid. From what I have been told, this drug is as old as dirt, but is supposed to be the most effective for reducing spinal fluid production and therefore reducing intracranial pressure. The fun side effects of this drug include tingling in my hands and feet, and even my face and neck when it's bad. I remember one time riding in the car after I had just increased my dosage, and I felt like I had a hair or something tickling my neck. I kept trying to swipe away at it and couldn't get it and it was bothering me so much that I started clawing at my neck. Then I realized that I couldn't feel my face. Within a few minutes my hands started tingling so bad that they just HURT. It's the pins and needles feeling that you get when part of your body falls asleep, except that there is no waking it up and it's much more intense. So anyway, once I realized what was going on, the panic subsided and all I could do was lay my head back, breathe, and wait for the feeling to pass. Another side effect of Diamox is that it changes the way a lot of foods taste. Anyone who knows me knows how much I love to eat, and therefore should understand how highly disappointing this is. Anything carbonated tastes like...well to me, vomit. Others describe it as just tasting flat, like chemicals, or metallic. To me, it's vomit. I was never a huge pop drinker, but I have never wanted it more than when I can't drink it because it will taste like crap. I shouldn't complain though, it's probably a good thing that I don't drink it at all now. Also loss of appetite. I've finally hit a plateau over the last several months, but I went from literally shoving food in my mouth all day every day (how I did not weigh 300 lbs I have NO idea), to averaging 1 meal a day. People comment all the time about how I have lost so much weight...I'm 40lbs down now and haven't been at this weight in about 10 years. I never thought I'd complain about losing weight, but I feel gross. My boobs and butt have deflated and yet somehow I still have my belly pouch. Really universe? You couldn't throw me a bone on that one?? People ask me all the time how I've done it and tell me what a "good job" I'm doing. I haven't even tried. I do try to make healthier choices because if you're not eating that much at all, you should probably use your calories wisely, but it's not like I've been busting my butt at the gym.
Then I have Lasix, a diuretic that I refer to as my "pee pills". (Even my 5-year-old knows about my pee pills, lol.) When Diamox alone doesn't work, they add this to help try to decrease the fluid in your body. Normally I am used to using the restroom maybe 3 times a day? 4 at most. I just never really have to go. With the pee pills, I spend about 3 hours going to the bathroom every 15-30 minutes. It's ridiculous. I don't think I peed that much when I was 9 months pregnant. And it's not like it's something you can hold, I can't tell you how many times I've been stuck on the phone at work and thought I was going to actually pee in my pants because I couldn't get the person off the phone so I could go to the bathroom! Awful. And what do you say?? I'm sorry, I REALLY have to pee, can I put you on hold for a minute?? Umm no....
I've been given all kinds of drugs for pain. Despite everything to control my pressure, I still have unbearable headaches sometimes, and your standard advil is just not going to cover it. They don't like to prescribe narcotic painkillers for chronic pain, plus narcotics can cause rebound headaches, so we have to find other drugs. I was given tramadol, which I'm supposed to take every 6 hours. I'm lucky if it takes the edge off for even 2. My specialist (I'll be referring to her as Dr. Fancy-Pants, and there will be more on her later) gave me a couple of old depression medications to try. Apparently they found that these old antidepressants, when used in low doses, are effective for treating headaches. The first one, which was the tiniest pill I've had to take in a long time, literally knocked me out for 2 days straight. I could not drag myself off the couch and slept probably 80% of that 2 day period. With a full time job and 2 young children to take care of, I just can't do it. Did I mention she told me that it "might make it a little hard to get out of bed in the morning"? Um...what?? I can't imagine taking a full dose of this for depression. I think it would kill me. How in the WORLD do people take full doses of this stuff?? When that didn't work, she had me try another similar drug, nortriptlyn (sp). I call this one "pseudo death". I took it for 3 days (2 days more than the last one!). It made me so weak that I struggled to move my own body weight, let alone lift anything. Going from sitting to standing I would get dizzy and feel like I was going to pass out. I couldn't stand for more than a couple of seconds without feeling like I was going to faint, even if I was leaning on something. I really don't know any other way to describe the feeling of being on this drug other than pseudo death. Sadly, it was pretty effective for the headaches, but again, useless when I can't function as a normal human being. I keep it on hand for when things are really bad, but I can never make it past 2-3 days on it without having to stop. The last time I took it I accidentally combined it with another drug that I had never combined it with before, and it knocked me out for a whole 2 days. Oops.
When Dr. Fancy-Pants retired, I was having a particularly rough time with pain, so she sent me a new prescription for something called Topamax. I was to wean off Diamox and onto this one over a 4 week period. 2 weeks in, I knew I was in trouble. I had such a short fuse that I was afraid to be around people at all. Especially my poor kids. They seriously must have thought that I had lost it. I have only told my 2 closest friends even the half of how bad it was, but I'm too embarrassed/ashamed to tell them all of the things that went through my mind or things that I said or did. Not to worry, nothing that would have CPS at my door, but damn near close enough that it was scary. That is just not me. What is worse, is that in the moment, I KNEW I was being unreasonable, out of control....crazy. Inside my head I would try to talk myself down, leave the room, count to 10, anything to calm myself down, but I was not in control. That is one of the scariest feelings I have ever experienced. I called my neurologist in tears and refused to take it anymore. Luckily, they recognized that what I was experiencing is a REAL side effect, that only about 5% of people on the drug experience. It felt good to be validated though, and know that I was not actually losing my mind. Picture the worst bout of PMS that you've ever had, and amplify it by 1000. Maybe that's close to what I was feeling. That was certainly the worst side effect of Topamax, but it also gave me some bad memory issues. I had trouble keeping my train of thought, remembering words, one time I couldn't even remember my own son's name for a minute. I just drew a complete blank. The scariest was one night when I left home to run to the store, which is literally just up the road from my house. I was sitting at the light at the intersection I have been through a million times in the 7 years that I've lived here, and for a second I had no idea where I was or why I had even left the house. Luckily it was just a passing moment, but it was kind of scary. I was afraid I'd be out somewhere and forget how to get home or something.
There are other things that I take or have taken, but those are the ones that have had the most influence on how I feel, whether it be positive or negative. Diamox seems to help my headaches for about a month, and then my body gets used to the dosage and it has to be increased. I wish I could tolerate the side effects at the higher dose better, or that my body would take longer to get adjusted. So far I'm not a major fan of anything else that I've been given. It just seems like there is nothing they can do but have a fun little chemistry experiment. I get really worried about the drug combinations and sometimes I feel like I am just poisoning my body. But what is worse? Exploding pain in my head or all of these side effects? It's a toss up on any given day really.
To anyone who actually took the time to sit and read through all of this nonsense....thanks for caring enough (or being bored enough??) to read through all of my rambling!
So just in case anyone is not clear, the illness that I have is called pseudo tumor cerebri, which literally translates to "false brain tumor". The newest and most politically correct term is idiopathic intracranial hypertension. (You'll probably see me use the abbreviations PTC and IIH for these names.) What all of these fancy medical terms mean is that for some unknown reason, my body is either producing too much or not re-absorbing my spinal fluid fast enough. The excess fluid in my skull causes unbelievable pressure on my brain (which is what a tumor would do, hence the term false tumor). As a result, I have daily headaches of varying degrees, and depending on how bad the pressure is, my optic nerves swell and cause me to have blurry or double vision. (More on all of this fun stuff later.)
So now the question is...where to begin with this story? Most likely it will turn into a jumbled mess as bits and pieces come to me, so I apologize in advance if I make no sense.
Just for the fun of it, I feel like talking about the drug cocktail that I take on a daily basis. I carry a small pharmacy in my purse. I started with Diamox, a drug that decreases production of cerebrospinal fluid. From what I have been told, this drug is as old as dirt, but is supposed to be the most effective for reducing spinal fluid production and therefore reducing intracranial pressure. The fun side effects of this drug include tingling in my hands and feet, and even my face and neck when it's bad. I remember one time riding in the car after I had just increased my dosage, and I felt like I had a hair or something tickling my neck. I kept trying to swipe away at it and couldn't get it and it was bothering me so much that I started clawing at my neck. Then I realized that I couldn't feel my face. Within a few minutes my hands started tingling so bad that they just HURT. It's the pins and needles feeling that you get when part of your body falls asleep, except that there is no waking it up and it's much more intense. So anyway, once I realized what was going on, the panic subsided and all I could do was lay my head back, breathe, and wait for the feeling to pass. Another side effect of Diamox is that it changes the way a lot of foods taste. Anyone who knows me knows how much I love to eat, and therefore should understand how highly disappointing this is. Anything carbonated tastes like...well to me, vomit. Others describe it as just tasting flat, like chemicals, or metallic. To me, it's vomit. I was never a huge pop drinker, but I have never wanted it more than when I can't drink it because it will taste like crap. I shouldn't complain though, it's probably a good thing that I don't drink it at all now. Also loss of appetite. I've finally hit a plateau over the last several months, but I went from literally shoving food in my mouth all day every day (how I did not weigh 300 lbs I have NO idea), to averaging 1 meal a day. People comment all the time about how I have lost so much weight...I'm 40lbs down now and haven't been at this weight in about 10 years. I never thought I'd complain about losing weight, but I feel gross. My boobs and butt have deflated and yet somehow I still have my belly pouch. Really universe? You couldn't throw me a bone on that one?? People ask me all the time how I've done it and tell me what a "good job" I'm doing. I haven't even tried. I do try to make healthier choices because if you're not eating that much at all, you should probably use your calories wisely, but it's not like I've been busting my butt at the gym.
Then I have Lasix, a diuretic that I refer to as my "pee pills". (Even my 5-year-old knows about my pee pills, lol.) When Diamox alone doesn't work, they add this to help try to decrease the fluid in your body. Normally I am used to using the restroom maybe 3 times a day? 4 at most. I just never really have to go. With the pee pills, I spend about 3 hours going to the bathroom every 15-30 minutes. It's ridiculous. I don't think I peed that much when I was 9 months pregnant. And it's not like it's something you can hold, I can't tell you how many times I've been stuck on the phone at work and thought I was going to actually pee in my pants because I couldn't get the person off the phone so I could go to the bathroom! Awful. And what do you say?? I'm sorry, I REALLY have to pee, can I put you on hold for a minute?? Umm no....
I've been given all kinds of drugs for pain. Despite everything to control my pressure, I still have unbearable headaches sometimes, and your standard advil is just not going to cover it. They don't like to prescribe narcotic painkillers for chronic pain, plus narcotics can cause rebound headaches, so we have to find other drugs. I was given tramadol, which I'm supposed to take every 6 hours. I'm lucky if it takes the edge off for even 2. My specialist (I'll be referring to her as Dr. Fancy-Pants, and there will be more on her later) gave me a couple of old depression medications to try. Apparently they found that these old antidepressants, when used in low doses, are effective for treating headaches. The first one, which was the tiniest pill I've had to take in a long time, literally knocked me out for 2 days straight. I could not drag myself off the couch and slept probably 80% of that 2 day period. With a full time job and 2 young children to take care of, I just can't do it. Did I mention she told me that it "might make it a little hard to get out of bed in the morning"? Um...what?? I can't imagine taking a full dose of this for depression. I think it would kill me. How in the WORLD do people take full doses of this stuff?? When that didn't work, she had me try another similar drug, nortriptlyn (sp). I call this one "pseudo death". I took it for 3 days (2 days more than the last one!). It made me so weak that I struggled to move my own body weight, let alone lift anything. Going from sitting to standing I would get dizzy and feel like I was going to pass out. I couldn't stand for more than a couple of seconds without feeling like I was going to faint, even if I was leaning on something. I really don't know any other way to describe the feeling of being on this drug other than pseudo death. Sadly, it was pretty effective for the headaches, but again, useless when I can't function as a normal human being. I keep it on hand for when things are really bad, but I can never make it past 2-3 days on it without having to stop. The last time I took it I accidentally combined it with another drug that I had never combined it with before, and it knocked me out for a whole 2 days. Oops.
When Dr. Fancy-Pants retired, I was having a particularly rough time with pain, so she sent me a new prescription for something called Topamax. I was to wean off Diamox and onto this one over a 4 week period. 2 weeks in, I knew I was in trouble. I had such a short fuse that I was afraid to be around people at all. Especially my poor kids. They seriously must have thought that I had lost it. I have only told my 2 closest friends even the half of how bad it was, but I'm too embarrassed/ashamed to tell them all of the things that went through my mind or things that I said or did. Not to worry, nothing that would have CPS at my door, but damn near close enough that it was scary. That is just not me. What is worse, is that in the moment, I KNEW I was being unreasonable, out of control....crazy. Inside my head I would try to talk myself down, leave the room, count to 10, anything to calm myself down, but I was not in control. That is one of the scariest feelings I have ever experienced. I called my neurologist in tears and refused to take it anymore. Luckily, they recognized that what I was experiencing is a REAL side effect, that only about 5% of people on the drug experience. It felt good to be validated though, and know that I was not actually losing my mind. Picture the worst bout of PMS that you've ever had, and amplify it by 1000. Maybe that's close to what I was feeling. That was certainly the worst side effect of Topamax, but it also gave me some bad memory issues. I had trouble keeping my train of thought, remembering words, one time I couldn't even remember my own son's name for a minute. I just drew a complete blank. The scariest was one night when I left home to run to the store, which is literally just up the road from my house. I was sitting at the light at the intersection I have been through a million times in the 7 years that I've lived here, and for a second I had no idea where I was or why I had even left the house. Luckily it was just a passing moment, but it was kind of scary. I was afraid I'd be out somewhere and forget how to get home or something.
There are other things that I take or have taken, but those are the ones that have had the most influence on how I feel, whether it be positive or negative. Diamox seems to help my headaches for about a month, and then my body gets used to the dosage and it has to be increased. I wish I could tolerate the side effects at the higher dose better, or that my body would take longer to get adjusted. So far I'm not a major fan of anything else that I've been given. It just seems like there is nothing they can do but have a fun little chemistry experiment. I get really worried about the drug combinations and sometimes I feel like I am just poisoning my body. But what is worse? Exploding pain in my head or all of these side effects? It's a toss up on any given day really.
To anyone who actually took the time to sit and read through all of this nonsense....thanks for caring enough (or being bored enough??) to read through all of my rambling!
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