Quick note before we get started, I added a gadget that is supposed to allow you to enter your e-mail address and get e-mail notifications each time I post, but a few people have tried it and said it doesn't appear to be doing anything. I tried it myself with an old e-mail address and I agree...it doesn't appear to do anything. I suppose this post will be our test. If you receive an e-mail notification about this, please let me know. Or, if you put your e-mail address in and did not get a notification, let me know about that. I will remove said gadget if it turns out to be useless.
On to the tap....so we left off yesterday with weeks of unrelenting, excruciating pain, and extreme, nauseating double vision. Many people were urging me to go to the ER, but I was convinced that they wouldn't be able to help me, or that they would just tell me to wait for my appointment with the neurologist (which again, was 3 months away). Even more so, I was afraid of the bill. I was told that financial assistance was usually available, but without any kind of guarantee or knowing what the total would be, I was still worried about it, since you know, we could barely eat. Everyone kept telling me that I just had to go and they would get paid when they get paid, but I can't stand the idea of having that debt hanging over my head and ruining my credit, which I had JUST repaired after a messy divorce. After a co-worker made a comment that led me to believe I could possibly be let go, I broke down (no, literally BROKE DOWN) and decided to go to the ER.
My mother-in-law took me to the hospital, and when I walked up to the desk the lady asked how she could help me. Before I even got a word out I burst into tears. The only words I could get out were "I need to see a doctor". I must have looked like a horrible mess because she didn't even ask what the problem was, she just ushered me around the desk and into one of the triage rooms. Explaining to the nurse taking my information the reason for my visit was one of the most frustrating things ever. I'm here for a headache. "Headache" is really not the proper term for what I was experiencing. I didn't know how to explain myself to make these people understand that I didn't just have a headache or a migraine. Now I do appreciate that she took me seriously, and even offered to turn off the lights if it was irritating my headache. (I let her turn them off, but honestly it made no difference. The pain was so extreme that something as silly as light couldn't even touch it anymore.)
I was put into a room and made to change into a gown, removing everything but my undies. TMI alert: I hate wedgies, and I'm not about to go around picking my butt all the time, so my typical style of choice is a thong. Now store that information away for a moment... So this doctor comes in, this young, much too excited to be here bleach blonde guy, who asks me what is going on. I explain my whole story for the 500th time, and how I have an appointment to see a neurologist but I can't get in for 3 months and I just cannot handle the pain that I am in for that long. He disappears for a few minutes and comes back to tell me, a little too enthusiastically, that we're just going to go ahead and do a spinal tap. He reviewed my CT and MRI and he says that's what the neurologist would do next anyway, so we may as well just do it now. He tells me not to worry, he has done TONS of these before. (Great. Awesome. Can't wait. Help me please?? Somebody?? This guy seems REALLY happy about sticking a giant needle in my spine and I'm not sure if I share his enthusiasm!)
Blondie practically skips out of the room to go prepare his toys, uh...tools. I type out a frantic text to my boss and a few close friends and family that says nothing more than "spinal tap". Blondie then returns, kicks out my mother-in-law because we can't have anyone contaminating the sterile area, and he brings in this girl who is clearly some type of aide in training, and is younger than me. Her job, and I am not kidding, is to hold me down. Now, I absolutely CAN NOT see the needle or really any of the other tools that are about to be used to drill a hole in my spine, so I lay down facing the wall away from where the doctor is. He gets everything all prepped and ready and tells me to curl up in a ball to give him a nice space between the vertebrae where he can access my spine. I curl up in the fetal position like this is my job and I do it all day long. He even tells me what a great job I did! (I guess if nothing else, I will always know that I am good at laying in the fetal position!) Next thing you know, he completely whips open the back of my gown. Luckily, my arm was on my side, so
there was no side boob hanging out, but let's think back for a second to my choice style of underwear. Had I known that this would be happening, I'd have worn something with a little more coverage, but this guy now has a full view of my entire back side. I have never been more happy to be curled up in the fetal position in my LIFE. I mumbled something to the girl, who was standing in front of me, about how if I had known about this I would have worn grannie panties, and she said something along the lines of "don't worry, I won't tell" but all I could think about was "YES YOU WILL! YOU'RE GOING TO GO HOME AND TELL ALL OF YOUR FRIENDS ABOUT THE NAKED GIRL WITH HER BUTT HANGING OUT!!!!"
Moving on...then the poking and prodding begins. The doctor asks me if I have ever had an epidural, and I say yes, because I have 2 kids. He tells me that this is literally the exact same procedure. That makes me feel a little better, I'm a pro at this. The only difference is that I'm used to feeling like my body is about to be ripped in half when this is happening, but I decide to cope in the same way and focus on the real pain, which is the brain pain. Except that this girl is standing over me, with one hand on my shoulder and the other on my side/hip area, "holding me down". I swear to you I was not moving a muscle. I was practically holding my breath the entire time because I was afraid the movement of my breathing would cause some horrible needle-to-spine catastrophe. I wanted to scream curse words at her and tell her to get off of me, but luckily she eventually realized that I wasn't going anywhere and just stood there and watched instead. So between being curled up in my tight little ball and being afraid to breathe, oxygen suddenly became very short. I started feeling very warm, a bit dizzy, and quite nauseous. Oh good Lord PLEASE do not let me puke while there is a giant needle in my spine!! Why is this taking so long?? Somehow I made it through the ordeal without vomiting or passing out, and I think I should have at least gotten a cookie or a sticker or something for that. Just saying.
So Blondie gets his torture apparatuses situated in my spine, and taps me like a maple tree in the spring. (Yes, appetizing isn't it?) He says my opening pressure is 44. He then proceeds to drain tube after tube after tube after tube of fluid. As he is draining, I can actually feel the fluid leaving my head. I can feel the pressure being relieved, and yet at the same time it doesn't hurt any less, but I can feel it. He then finally decides that he's taken enough and takes a closing pressure of 7, but tells me not to worry, I still have PLENTY of spinal fluid and I'll be fine. (He is a LIAR, but I don't find that out until the next day. Also, just for a frame of reference, a "normal" range opening pressure is somewhere in the mid-teens, where anything over a 19 or 20 is usually diagnosed as PTC. On the low end, it is different for everyone, but most closing pressures I see are in the low-mid teens, and I think the lowest I've ever seen besides mine was a 9.) He detaches all of his needles and tubing and sticks a bandaid on there and I'm sitting up again within about 5 minutes.
The spinal fluid is sent to the lab for testing, and it's found that I have about double the normal white blood cell count. Blondie says it's possible that I had a touch of viral meningitis, but if so it's not one of those really bad cases that you hear about on the news, and it's going away now, plus there's nothing they could have done to treat it anyway. (This is interesting, because meningitis was something I had wondered about when I first became sick.) He called the neurologist that I had my appointment with, who confirmed that based on the results of my spinal tap, I probably do have pseudo tumor. He gave me a prescription for my beloved Diamox and told me that it will deplete my potassium, but if I just eat a couple of bananas a day I should be fine. (Again, he lies, but more on that later.)
Having had this done, and now having a diagnosis, I was thinking that I would be fixed, healed, possibly cured. I asked Blondie if my vision would go back to normal? He said yes, my vision should go back to normal. There are NO WORDS for the excitement I had thinking that I could potentially wake up the next morning with normal vision. It was like being 5 years old and waiting for Christmas morning all over again! I was then discharged, with no further instruction other than to keep my appointment that wasn't for another 3 months....
That is enough for tonight, but stay tuned for The Aftermath, which is also quite fun and interesting.
Monday, January 6, 2014
Friday, January 3, 2014
Let's start at the very beginning, a very good place to start!
First, a small tangent...yes, I'm going off on a tangent before I even get started. Trust ne, just go with it, it's less confusing this way. (Oh, and I hope that you read the title of this post with the Do Rae Mi song from The Sound of Music in mind, otherwise you completely missed the effect.)
Anyway, remember my good friend Diamox? Remember the tingly fingers that go along with it? The only thing worse than tingly fingers on Diamox, are tingly fingers on Diamox IN THE COLD. Temps have been in the single digits and negatives, which means that gloves on or not my fingers are frozen. For whatever reason, when this gets combined with the tingles, it means nothing but PAIN. I can't even think of anything to compare it to, it just hurts so.freaking.bad. That is all, just needed you to know that.
Now one might ask themselves, how exactly do you know that you have a fake tumor? How are you diagnosed with something like this?? This disease affects everyone differently, so I'm sure the process of getting a diagnoses is very different for each person, but I will share with you how I found out about mine. In April of 2013, I came down with what I thought was just a really bad sinus infection. I didn't have health insurance yet at my new job, so I was really excited when I was able to get my family doctor to just call in a prescription for amoxicillin. After about 7 out of 10 days that I was to be on this, I broke out in a rash all over my body. It really wasn't bothering me a whole lot, so I consulted with my sister-in-law, who was a nursing student at the time. She checked with some nurses that she worked with, and they advised that I stopped taking the medicine IMMEDIATELY because at any time the reaction could become very serious and I could die, or something scary like that. Point made, I stopped taking it and called my doctor. I was told that I probably had enough of the antibiotic that I would be ok, but if I felt like the infection was coming back, to let them know and they'd call in a new Rx. Mind you...through all of this I really never felt a whole lot of relief from the pressure in my sinuses, which was highly disappointing on day 7 of 10!! Within a couple more days, I had really bad pressure under my eyes and right around my eyebrows, which I figured was clearly my sinuses. A stronger antibiotic was called in, and a full 10 days was completed.
Did I feel better? Not so much. The pressure was gone from my sinuses, but it was increasing in my forehead area and making its way to the top/front of my head. I went to the doctor, he suggested that I was having migraines and prescribed fioricet with codeine (something that I found out later is NOT prescribed for this condition because it actually causes rebound headaches). The med took the edge off the pain, but I had to take it like clockwork. Regardless though, the pain was getting worse and worse, to the point that I was extremely nauseous and dizzy, and could not focus at work. I made several trips back to the doctor, and he eventually ordered a CT scan. The scan came back clear, so my doctor decided that I must have developed migraines and would now have to deal with this for the rest of my life. At this point, I think I was on at least 2 solid weeks of 24/7 headaches, eating either nothing or a little bit of chicken noodle soup and nothing else each day. I think the doctor got annoyed with me because I kept coming back and he just didn't know what was wrong. He kept prescribing different medications (which was expensive, not having insurance), with the last being a blood pressure medicine that is supposed to help headaches if you don't have high blood pressure. Biggest waste of $90 EVER.
After about 2 weeks off work, it was decided that I would just have to suck it up and suffer through, so on the very day that I decided to go back, I was driving my daughter to school and got not quite halfway there when I realized that I couldn't tell what lane I was in, or what lane the other cars were in. The cars that were in the left lane next to me looked like they were in my lane. I ended up driving up on the curb on the side of the road. I have no idea how I made it to my daughter's school, but I did. I sent my boss a panicked text that I couldn't come in because I couldn't see, and then I called my optometrist to see if I could come in to get my eyes checked. (Of course he was out that day, so I had to wait until the next afternoon.) Once I calmed down, I realized that I was having double vision. When I went to the eye doctor, he looked in my eyes and said that my optic nerves were very swollen. I discussed everything that had happened with my family doctor and the fact that my CT was clear, and he said that he thought I might have something called pseudo tumor cerebri. That was the first time any doctor had given me any type of possible REAL diagnosis. He told me that he'd have to refer me to an ophthalmologist, but that they'd probably just prescribe a steroid and I'd be on my way. I cannot even tell you how EXCITED I was that I possibly had a diagnosis, and that it was treatable. I assumed that I would need one more appointment and then I'd get a prescription and be on my way to recovery. I was SO wrong.
I saw the ophthalmologist 2 days later. He looked at my eyes for all of 2 seconds and confirmed that yes, my optic nerves were swollen. (Thanks doc, we've already established that! Glad I just paid you $140 to tell me something I already know!) He said that it wasn't enough to diagnose pseudo tumor and that I needed to get an MRI. The CT doesn't show enough. So then we had to work on getting that scheduled. Since I didn't have insurance, I was trying to connect with a lady in the billing department to see if there was any financial assistance available. I took several days to get through to her because then we hit the weekend and apparently she goes home very early in the day. When I finally did reach her, she had to mail me some paperwork requesting certain documents. I insisted I could come pick them up to speed things up, but she insisted she would just mail them. Guess what? They didn't go out for several days and I ended up having to pick them up anyway. Thanks for wasting precious time lady, this is only my brain and my life we are talking about here. No big deal! Anyway, I get together all of my info, making a trip in to work to make copies and being unbelievably embarrassed by the fact that when people look at me they have no idea what I am looking at because my eyes are going in 2 completely opposite directions! (If I wasn't nauseous enough already, the double vision did NOTHING to help that situation!) I submitted my paperwork, waited a couple of days, and the lady called and told me that I didn't qualify for any assistance because it's only for people who make under X-thousand dollars per year. (Deep breaths...I am seeing red...double red...) WHY did I just waste all of this time...because of course they wouldn't even schedule me until we had a decision on the financial assistance, if they have a set income limit regardless of deductions?!?!? COULDN'T SHE HAVE TOLD ME THAT TO BEGIN WITH???
Moving on...too late now. I get my MRI done, and the ophthalmologist decides that I need to be referred to a neurologist. Can I say pass the buck?? How many more doctors do I need to see?? They set up an appointment for me....for 3 months out. Yes, I had double vision so bad that I couldn't drive, extreme nausea so that I had to be put on medication for it just to keep WATER and SOUP down, I couldn't work or take care of my children, and I had to wait 3 months to see the next doctor???
Now I've been focusing on the annoyingness of being passed around and the doctors not having a clue, but there are no words to express the pain that I was in during all of this. I could not function. I couldn't work, I couldn't drive, I couldn't cook a meal for my family. All of our money was going to my various prescriptions and doctors appointments, so we had no money for groceries. My children were eating macaroni and cheese every single day for dinner. (My son STILL cringes 8 months later when we have mac and cheese!) When I would lay down to sleep, it literally felt like my pillow was a pile of bricks...not a neatly stacked, flat, organized pile of bricks, but a pile that was just thrown together. Some of these bricks were probably broken in half and had nice extra sharp and pointy edges. Every noise that my children made caused my head to scream in pain. Don't even get me started on the dogs barking... I would have paid anyone my last dollar to just drill a hole in my skull to relieve the pressure. I should also add that at this point, the pain had spread from my forehead, to the top of my head, down into the base of my skull, neck, and even down into my shoulders. (This was all dating back to when I saw my family doctor...so imagine weeks of pain 24 hours a day in all of these places.) I was home alone all day, but couldn't read, because I couldn't see. I couldn't watch TV, because again, I couldn't see. All I could do was post obnoxiously on facebook about everything I was going through (with one eye closed so that I could actually focus) and cry. I spent so much time crying by myself. Not knowing what was wrong with me or how to fix it or if it could be fixed was SO scary. On top of that, I was worried about losing my job, which I had just started 2 months prior, worried about how we would pay for our mortgage, utilities, and food. It was overwhelming. During all of this some invisible force had my skull in a vice grip, tightening it constantly without mercy. There was a stack of books on top of my head, someone beating me in the back of the head with a baseball bat. And I was alone. No one knew what I was going through, how much pain I was really in, what it felt like to be in this position. I had support from friends and family, but no one who had been in my shoes and could really KNOW and UNDERSTAND.
Not to end abruptly, but I'm realizing that this is getting extremely long, so best to end now before I lose my audience, if I haven't already. Stay tuned for the exciting Tale of the Tap (aka the visit to the ER that involved my spinal tap...you just can't wait can you?).
Anyway, remember my good friend Diamox? Remember the tingly fingers that go along with it? The only thing worse than tingly fingers on Diamox, are tingly fingers on Diamox IN THE COLD. Temps have been in the single digits and negatives, which means that gloves on or not my fingers are frozen. For whatever reason, when this gets combined with the tingles, it means nothing but PAIN. I can't even think of anything to compare it to, it just hurts so.freaking.bad. That is all, just needed you to know that.
Now one might ask themselves, how exactly do you know that you have a fake tumor? How are you diagnosed with something like this?? This disease affects everyone differently, so I'm sure the process of getting a diagnoses is very different for each person, but I will share with you how I found out about mine. In April of 2013, I came down with what I thought was just a really bad sinus infection. I didn't have health insurance yet at my new job, so I was really excited when I was able to get my family doctor to just call in a prescription for amoxicillin. After about 7 out of 10 days that I was to be on this, I broke out in a rash all over my body. It really wasn't bothering me a whole lot, so I consulted with my sister-in-law, who was a nursing student at the time. She checked with some nurses that she worked with, and they advised that I stopped taking the medicine IMMEDIATELY because at any time the reaction could become very serious and I could die, or something scary like that. Point made, I stopped taking it and called my doctor. I was told that I probably had enough of the antibiotic that I would be ok, but if I felt like the infection was coming back, to let them know and they'd call in a new Rx. Mind you...through all of this I really never felt a whole lot of relief from the pressure in my sinuses, which was highly disappointing on day 7 of 10!! Within a couple more days, I had really bad pressure under my eyes and right around my eyebrows, which I figured was clearly my sinuses. A stronger antibiotic was called in, and a full 10 days was completed.
Did I feel better? Not so much. The pressure was gone from my sinuses, but it was increasing in my forehead area and making its way to the top/front of my head. I went to the doctor, he suggested that I was having migraines and prescribed fioricet with codeine (something that I found out later is NOT prescribed for this condition because it actually causes rebound headaches). The med took the edge off the pain, but I had to take it like clockwork. Regardless though, the pain was getting worse and worse, to the point that I was extremely nauseous and dizzy, and could not focus at work. I made several trips back to the doctor, and he eventually ordered a CT scan. The scan came back clear, so my doctor decided that I must have developed migraines and would now have to deal with this for the rest of my life. At this point, I think I was on at least 2 solid weeks of 24/7 headaches, eating either nothing or a little bit of chicken noodle soup and nothing else each day. I think the doctor got annoyed with me because I kept coming back and he just didn't know what was wrong. He kept prescribing different medications (which was expensive, not having insurance), with the last being a blood pressure medicine that is supposed to help headaches if you don't have high blood pressure. Biggest waste of $90 EVER.
After about 2 weeks off work, it was decided that I would just have to suck it up and suffer through, so on the very day that I decided to go back, I was driving my daughter to school and got not quite halfway there when I realized that I couldn't tell what lane I was in, or what lane the other cars were in. The cars that were in the left lane next to me looked like they were in my lane. I ended up driving up on the curb on the side of the road. I have no idea how I made it to my daughter's school, but I did. I sent my boss a panicked text that I couldn't come in because I couldn't see, and then I called my optometrist to see if I could come in to get my eyes checked. (Of course he was out that day, so I had to wait until the next afternoon.) Once I calmed down, I realized that I was having double vision. When I went to the eye doctor, he looked in my eyes and said that my optic nerves were very swollen. I discussed everything that had happened with my family doctor and the fact that my CT was clear, and he said that he thought I might have something called pseudo tumor cerebri. That was the first time any doctor had given me any type of possible REAL diagnosis. He told me that he'd have to refer me to an ophthalmologist, but that they'd probably just prescribe a steroid and I'd be on my way. I cannot even tell you how EXCITED I was that I possibly had a diagnosis, and that it was treatable. I assumed that I would need one more appointment and then I'd get a prescription and be on my way to recovery. I was SO wrong.
I saw the ophthalmologist 2 days later. He looked at my eyes for all of 2 seconds and confirmed that yes, my optic nerves were swollen. (Thanks doc, we've already established that! Glad I just paid you $140 to tell me something I already know!) He said that it wasn't enough to diagnose pseudo tumor and that I needed to get an MRI. The CT doesn't show enough. So then we had to work on getting that scheduled. Since I didn't have insurance, I was trying to connect with a lady in the billing department to see if there was any financial assistance available. I took several days to get through to her because then we hit the weekend and apparently she goes home very early in the day. When I finally did reach her, she had to mail me some paperwork requesting certain documents. I insisted I could come pick them up to speed things up, but she insisted she would just mail them. Guess what? They didn't go out for several days and I ended up having to pick them up anyway. Thanks for wasting precious time lady, this is only my brain and my life we are talking about here. No big deal! Anyway, I get together all of my info, making a trip in to work to make copies and being unbelievably embarrassed by the fact that when people look at me they have no idea what I am looking at because my eyes are going in 2 completely opposite directions! (If I wasn't nauseous enough already, the double vision did NOTHING to help that situation!) I submitted my paperwork, waited a couple of days, and the lady called and told me that I didn't qualify for any assistance because it's only for people who make under X-thousand dollars per year. (Deep breaths...I am seeing red...double red...) WHY did I just waste all of this time...because of course they wouldn't even schedule me until we had a decision on the financial assistance, if they have a set income limit regardless of deductions?!?!? COULDN'T SHE HAVE TOLD ME THAT TO BEGIN WITH???
Moving on...too late now. I get my MRI done, and the ophthalmologist decides that I need to be referred to a neurologist. Can I say pass the buck?? How many more doctors do I need to see?? They set up an appointment for me....for 3 months out. Yes, I had double vision so bad that I couldn't drive, extreme nausea so that I had to be put on medication for it just to keep WATER and SOUP down, I couldn't work or take care of my children, and I had to wait 3 months to see the next doctor???
Now I've been focusing on the annoyingness of being passed around and the doctors not having a clue, but there are no words to express the pain that I was in during all of this. I could not function. I couldn't work, I couldn't drive, I couldn't cook a meal for my family. All of our money was going to my various prescriptions and doctors appointments, so we had no money for groceries. My children were eating macaroni and cheese every single day for dinner. (My son STILL cringes 8 months later when we have mac and cheese!) When I would lay down to sleep, it literally felt like my pillow was a pile of bricks...not a neatly stacked, flat, organized pile of bricks, but a pile that was just thrown together. Some of these bricks were probably broken in half and had nice extra sharp and pointy edges. Every noise that my children made caused my head to scream in pain. Don't even get me started on the dogs barking... I would have paid anyone my last dollar to just drill a hole in my skull to relieve the pressure. I should also add that at this point, the pain had spread from my forehead, to the top of my head, down into the base of my skull, neck, and even down into my shoulders. (This was all dating back to when I saw my family doctor...so imagine weeks of pain 24 hours a day in all of these places.) I was home alone all day, but couldn't read, because I couldn't see. I couldn't watch TV, because again, I couldn't see. All I could do was post obnoxiously on facebook about everything I was going through (with one eye closed so that I could actually focus) and cry. I spent so much time crying by myself. Not knowing what was wrong with me or how to fix it or if it could be fixed was SO scary. On top of that, I was worried about losing my job, which I had just started 2 months prior, worried about how we would pay for our mortgage, utilities, and food. It was overwhelming. During all of this some invisible force had my skull in a vice grip, tightening it constantly without mercy. There was a stack of books on top of my head, someone beating me in the back of the head with a baseball bat. And I was alone. No one knew what I was going through, how much pain I was really in, what it felt like to be in this position. I had support from friends and family, but no one who had been in my shoes and could really KNOW and UNDERSTAND.
Not to end abruptly, but I'm realizing that this is getting extremely long, so best to end now before I lose my audience, if I haven't already. Stay tuned for the exciting Tale of the Tap (aka the visit to the ER that involved my spinal tap...you just can't wait can you?).
Monday, December 30, 2013
For Love and For Pain
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! :-)
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! :-)
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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