Everything changes so quickly. One day I'll feel wonderful, and an hour later my eyes will swell, my face will go numb, and I'll be informed that there's something wrong with me face. Yes, that's right, there really was something wrong with my face. I had been experiencing facial numbness, what I didn't realize was that I was also having trouble "moving" my face. So other people could also tell I was experiencing facial numbness. It was almost as if my face was morphing. I ran to a mirror and it looked as if my top lip was just sort of hanging there. The only way I can think of describing it is, if you've ever been given a Novocaine shot with dental work, the feeling you have afterwards where you could be drooling and not even know, that's what I was feeling like. I also had difficulty smiling right and swallowing. Right when I felt like we were figuring this whole mess out, something changes so suddenly.
I thought I was experiencing more symptoms of my condition. As it turns out these were not symptoms of the pseudotumor, but actually were horrible, damaging side effects of the medication that was just starting to fix me. Sadly, the only way for me to learn if it was my spinal pressure raising again was to go in for another spinal tap. Another trip to the hospital, two more pokes in the back, and yet another day spent away from my children. However, it was information I needed, and knowledge, right now, is very valuable. Sadly, since brain damage trumps elevated spinal pressure, this meant that even though my medication was FINALLY working on me, my doctor had no choice but to lower the dose and hope that it'll continue to work.
So more waiting, more limboing, more weekly doctors visits and more worrying. I have to say though that this experience is making me greatly appreciate being healthy.
Monday, April 25, 2011
Wednesday, April 20, 2011
If I wasn't a Christian Woman!
I got some decent news today. Actually, anything that isn't bad news at this point is good news. So, I got some good news today. I had my appointment with my eye doctor and was expecting my usual. I thought the swelling would be up, my blind spots would be worse, and I would be heading in for my, almost weekly, spinal tap. It had actually all started out very encouraging though! The swelling was not up, my blind spots had improved, and I do not need a spinal tap for now. I left the doctor's office in a great mood for the first time in a long time.
My mood, however, has changed rather quickly, and now I am about to stab this insurance lady with a spork.
My doctor has been very good at trying out every medication option there is before we consider surgery. I love this, because I do not want surgery on my eye balls! The last thing I need right now is to hear my insurance company tell me no. My doctor told me that the generic form of my medication just isn't doing the trick, and if there's even a chance that the brand name form will work on me I want to try it! My insurance, however, doesn't seem to think that this is quite as important as I do.
I like to think that I am usually a fairly nice person, but this lady just pushed the wrong button I guess, because I don't think she would believe I had a nice bone in my body. Poor insurance lady, but you know what, by the end of the conversation she had finally given in and helped me just a tiny bit. She must have finally got sick of me, because she put me through to someone who was actually helpful. It looks like I might actually get the medication I need, thanks mainly to the work of my doctor, not the insurance company, but I will be so grateful to get it!
If everything goes really well, I might make it an entire week without a single doctor's visit. What will I do with all this free time?
My mood, however, has changed rather quickly, and now I am about to stab this insurance lady with a spork.
My doctor has been very good at trying out every medication option there is before we consider surgery. I love this, because I do not want surgery on my eye balls! The last thing I need right now is to hear my insurance company tell me no. My doctor told me that the generic form of my medication just isn't doing the trick, and if there's even a chance that the brand name form will work on me I want to try it! My insurance, however, doesn't seem to think that this is quite as important as I do.
I like to think that I am usually a fairly nice person, but this lady just pushed the wrong button I guess, because I don't think she would believe I had a nice bone in my body. Poor insurance lady, but you know what, by the end of the conversation she had finally given in and helped me just a tiny bit. She must have finally got sick of me, because she put me through to someone who was actually helpful. It looks like I might actually get the medication I need, thanks mainly to the work of my doctor, not the insurance company, but I will be so grateful to get it!
If everything goes really well, I might make it an entire week without a single doctor's visit. What will I do with all this free time?
Sunday, April 17, 2011
Do you want me to cry?
After hearing I had a medical condition, to be honest, I wasn't all that worried. 90% of women were cured of their Pseudotumor's within a year after starting medication and losing weight. That was a very positive number, and I was a very positive person. However, I'll be honest and say that in the last month, my optimism has been tested time and time again, and that water glass, well, it's starting to look a little on the empty side.
My first spinal tap was, I thought, to test to see if I had a pseudotumor, as it turns out however spinal taps can also be used as a final attempt to relieve pressure when my medication just isn't cutting it. I've been averaging about 8 days in between spinal taps now. Every time I'm curled up in a ball on the edge on the bed with the needling sticking out of my back I think to myself, how I am going to make it through the next two days without picking up my children. I start telling myself again :: don't fall apart, don't fall apart :: I just know if I start crying I won't stop and crying fixes nothing, it changes nothing.
I'm stuck again. I know what's wrong with me now but I'm in this constant limbo of the medication starting to work and the medication quickly failing and having a spinal tap done to relieve pressure. I am currently on the highest dose of medication that I can be on and I'm at a healthy weight for my height now. If I'm really honest with myself, I never really thought the medication would work from the first time we had to up my dose. My body doesn't respond to medication like a normal persons would. A normal person feels great on vicodin, and for me it would barely touch a headache. I can't drink five shots of vodka and not feel a buzz. I'm just odd, things don't effect me like other people. So I'm on this highest dose of medication now and I'm praying that it works, because the surgical options, well frankly, they suck and I'd prefer not to go there.
I just want this all to be over with, but I can't help but think that this is just the start of my journey.
My first spinal tap was, I thought, to test to see if I had a pseudotumor, as it turns out however spinal taps can also be used as a final attempt to relieve pressure when my medication just isn't cutting it. I've been averaging about 8 days in between spinal taps now. Every time I'm curled up in a ball on the edge on the bed with the needling sticking out of my back I think to myself, how I am going to make it through the next two days without picking up my children. I start telling myself again :: don't fall apart, don't fall apart :: I just know if I start crying I won't stop and crying fixes nothing, it changes nothing.
I'm stuck again. I know what's wrong with me now but I'm in this constant limbo of the medication starting to work and the medication quickly failing and having a spinal tap done to relieve pressure. I am currently on the highest dose of medication that I can be on and I'm at a healthy weight for my height now. If I'm really honest with myself, I never really thought the medication would work from the first time we had to up my dose. My body doesn't respond to medication like a normal persons would. A normal person feels great on vicodin, and for me it would barely touch a headache. I can't drink five shots of vodka and not feel a buzz. I'm just odd, things don't effect me like other people. So I'm on this highest dose of medication now and I'm praying that it works, because the surgical options, well frankly, they suck and I'd prefer not to go there.
I just want this all to be over with, but I can't help but think that this is just the start of my journey.
Saturday, April 16, 2011
My sad truth!
It's taken five months, a string of doctors in all different specialities, dozens of tests, a handful of medical procedures and a whole mess of needle pokes, but I finally got a diagnosis. Nothing feels worse than not knowing what is wrong with you. Or at least that's what I thought. Not knowing what's causing the pains, the blackness, the sudden uselessness of your glasses you've been using since you were ten. Well, you start to question weather you really are just going crazy. If you go see eight different doctors who all say nothing is wrong with you and send you on your way, you start to believe maybe nothing is wrong with you.
The pain got worse though. My head felt like it was going to explode everyday. My visual symptoms worsened also, I was losing my vision entirely at least 20 times a day for at least a minute each time. I had worn glasses since I was ten years old but for some reason they made things blurry now. I couldn't wear them anymore. It was in March 2011 that I start getting some answers.
When my husband deployed in January 2011, I decided to pack up me and the children and go stay with my parents for a few months. They would get time with all of their grandparents and wouldn't miss daddy quite so much, and I wouldn't go insane living on the military base. Plus, I love and missed my family! So for us it worked out well. While here however my health deteriorated quickly. I had given up finding an answer already. I had seen four different doctors on the military base back home, but I knew it was time to try again. I got a new health care provider, whom I really liked, but he knew right away that my case was out of his hands and sent my for a CT scan and onto a Neurologist. It took a month to even get an appointment with the neurologist, in which time I am losing my vision daily more and more often. When I finally get to see him he tells me that I am having the visual effects of migraines he puts me on medication for it and that's that. However, in case there's more there he's missing, sends me to a special eye doctor.
This is where we get to my favorite part! I go to the eye doctor already on a medication for the visual migraines thinking this is a waste of time and after the doctor looks at my chart I'm pretty sure he thinks so too. However, by the end of the appointment, my eye doctor tells me he thinks I have what he calls a Pseudotumor, and that I need to have a spinal tap done right away because my optical nerves are swollen. One of the receptions then asks me, "Is there someone that will be able to drive you home from the hospital after the spinal tap?" I sat there trying to stay focused. ::don't fall apart, don't fall apart:: My mind was starting reel a mile a minute. I was trying to pay attention to what the doctor was telling me, it was important that I pay attention, but it was like my mind just froze. I couldn't compute what had just happened. It just seemed too surreal.
The doctor went on to his next patients and I left his office, and the second the door shut I broke to pieces. I had wanted an answer so badly, but the word Pseudotumor sounded so serious, so frightening, I don't think I wanted that. I drove to the hospital trying to collect myself and think the whole thing through. What was it the doctor had said? How did I get this? WHY??? What causes it? At the time I didn't know. I was lost in sea of desperation and confusion.
As it turned out I did in fact have a Pseudotumor. I spent the next five hours in the hospital getting my first spinal tap done, from which we learned that I produce too much spinal fluid which is causing pressure to build up in my head, thus putting pressure on my eyes. Alas, a true, solid, proven answer for what is wrong with me. I was relieved to know that a Pseudotumor, had nothing to do with having a tumor, and is cured 90% of the time with medication and weight loss. However, I have always been a stubborn person, so at this time the medication is having a hard time working on me. Which if it fails leaves only a couple options that I would prefer not to try.
I am learning though that this is just one trial in my life, and if it doesn't kill me it's only making me stronger and I am one strong woman. This is my journey back to health.
The pain got worse though. My head felt like it was going to explode everyday. My visual symptoms worsened also, I was losing my vision entirely at least 20 times a day for at least a minute each time. I had worn glasses since I was ten years old but for some reason they made things blurry now. I couldn't wear them anymore. It was in March 2011 that I start getting some answers.
When my husband deployed in January 2011, I decided to pack up me and the children and go stay with my parents for a few months. They would get time with all of their grandparents and wouldn't miss daddy quite so much, and I wouldn't go insane living on the military base. Plus, I love and missed my family! So for us it worked out well. While here however my health deteriorated quickly. I had given up finding an answer already. I had seen four different doctors on the military base back home, but I knew it was time to try again. I got a new health care provider, whom I really liked, but he knew right away that my case was out of his hands and sent my for a CT scan and onto a Neurologist. It took a month to even get an appointment with the neurologist, in which time I am losing my vision daily more and more often. When I finally get to see him he tells me that I am having the visual effects of migraines he puts me on medication for it and that's that. However, in case there's more there he's missing, sends me to a special eye doctor.
This is where we get to my favorite part! I go to the eye doctor already on a medication for the visual migraines thinking this is a waste of time and after the doctor looks at my chart I'm pretty sure he thinks so too. However, by the end of the appointment, my eye doctor tells me he thinks I have what he calls a Pseudotumor, and that I need to have a spinal tap done right away because my optical nerves are swollen. One of the receptions then asks me, "Is there someone that will be able to drive you home from the hospital after the spinal tap?" I sat there trying to stay focused. ::don't fall apart, don't fall apart:: My mind was starting reel a mile a minute. I was trying to pay attention to what the doctor was telling me, it was important that I pay attention, but it was like my mind just froze. I couldn't compute what had just happened. It just seemed too surreal.
The doctor went on to his next patients and I left his office, and the second the door shut I broke to pieces. I had wanted an answer so badly, but the word Pseudotumor sounded so serious, so frightening, I don't think I wanted that. I drove to the hospital trying to collect myself and think the whole thing through. What was it the doctor had said? How did I get this? WHY??? What causes it? At the time I didn't know. I was lost in sea of desperation and confusion.
As it turned out I did in fact have a Pseudotumor. I spent the next five hours in the hospital getting my first spinal tap done, from which we learned that I produce too much spinal fluid which is causing pressure to build up in my head, thus putting pressure on my eyes. Alas, a true, solid, proven answer for what is wrong with me. I was relieved to know that a Pseudotumor, had nothing to do with having a tumor, and is cured 90% of the time with medication and weight loss. However, I have always been a stubborn person, so at this time the medication is having a hard time working on me. Which if it fails leaves only a couple options that I would prefer not to try.
I am learning though that this is just one trial in my life, and if it doesn't kill me it's only making me stronger and I am one strong woman. This is my journey back to health.
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