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?).
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