I am very honored to have the ability to write about PTC/IIH and hopefully help others begin to understand what it is like to live with this neurological disorder.
I am at the beginning of this long journey and knowing that as of now there is no cure, this is going to be a long blog! I hope that you are all in for the long haul....as much as I'd like to think it will end, it won't, but this is going to be the story of what I have to deal with on a daily basis.
For the past few months, I have been depressed and scared. The more that I read on the internet the more that I fear that since I have this sulfa allergy and am unable to take medication to help the spinal fluid from producing so much....that I will need to have surgery. It's a very scary thought to have to have brain surgery and so I am trying to take a very proactive approach. I know that I have to speak up for myself when I am at the doctors appointments and with family and friends and even at work as well. If I don't speak up for myself and my needs, no one else will. No one else knows what I am feeling.
Right now I have a call in to my new neurologist asking about two different diuretics that I have been researching. *I have no medical background at all, so this is all research done on the internet.* I want to give that disclaimer so that no one thinks I know what I'm talking about. I'm merely asking about these two diuretics to see if it's possible for me to take one of them to help reduce the fluid--both of these I believe are non-sulfa based diuretics. I would much rather take and try a medication to see if it will work to help reduce the optic nerve swelling and reduce my CSF (spinal fluid) than have to go and get another spinal tap. Granted the doctor that performed the spinal tap on me was amazing. She was as soft as she could be and did complete it as quickly as she could knowing that it was painful for me and that I deal with anxiety (especially with needles!). However, I was crying during the procedure despite the numbing agent they used. It's not a fun situation, not that anyone expects it to be, but it also wasn't the worst pain I've ever been in. It's more uncomfortable than anything else. Another thing that I am trying to bring up to the neurologist that I forgot in my last appointment was the fact that I believe I may have sleep apnea. The last few months I have been losing a lot of sleep and rumor has it from my family that I snore just a bit (this is definitely me downplaying the situation). Over my winter break from teaching, my parents, sister, and I went on a vacation and shared a hotel room. My poor sister was sharing a bed with me and because I was snoring so loud due to the difficulty breathing.....she ended up sleeping on the bathroom floor in the hotel. I still feel bad about that, but it's a good thing she loves me. This was only a few weeks after my diagnosis and she knew how bad I was feeling and it's a great feeling to know that she cared about me and my sleep more than her own. She easily could have tried making me sleep in the bathroom on the floor. The poor thing, I still have to find a way of making it up to her.
Today was a somewhat rough day for me as far as my symptoms. The headaches were present, but not as bad as they could have been, however, from the minute I woke up until now I have been so dizzy. This morning I was actually walking into things and I feel as though I have completely lost all sense of balance. I will be in the middle of teaching and walking around the classroom and all of a sudden, I find myself completely losing my footing. At the age of 26....that's not normal. My students (8th grade) have been wonderful throughout all of this. I have been keeping them updated as to what is going on since I have been out sick a lot between the headaches and doctors visits, testing, etc. and it's been a huge blessing to have their support. One student even bought a get well card and had the entire class sign it for me. I just thought it was the sweetest thing and even teared up a little in front of them. I was completely touched.
Another thing I have noticed is that I have no memory at all anymore. I will do things that don't make any sense at all. This morning, I went into my refrigerator to get the milk for my cereal and guess what I found....the ice cream container from last night. There goes that ice cream! Luckily it didn't make a mess but man oh man do I want ice cream tonight and have none.
One thing that stinks about all of this is that I feel the need to talk about it, and with it being so rare, there aren't many people to talk about it with. I have been lucky enough to find support groups online and wonderful websites talking about PTC/IIH and how to deal with it, but there is no manual for this. And speaking to someone over the internet is not the same as having support from your family and friends. Don't get me wrong, I have the best family and friends possible. Each and every one of them loves me unconditionally and will do anything for me, and more and more I have been discovering that lately.
Right now I'm dealing with a horrible head cold which makes the headaches much worse than normal. I ran out of my pain medication yesterday and just felt the need to vent a little. I ended up posting a new "status" on facebook about how I felt too sick to go to the store to even get the medicine filled. My aunt who lives about two hours away saw it, called my aunt who lives ten minutes away....next thing I know, she's calling me up telling me she is on the way to go pick it up. I felt horrible and would not let her help me out. I hate feeling helpless.
I wish I could add a video blog right now, but I am not technologically advanced enough to be able to figure that out. I think seeing someone talk about it out loud and their facial expressions really helps to describe what is or is not happening.
One of my biggest frustrations is the fact that I don't look sick. A chemo patient loses their hair. An IIH patient looks healthy but has the same symptoms as someone who has a brain tumor. Granted it's a much better diagnosis than cancer and I would never wish that upon anyone, but it's hard for someone to understand what they can't see and what is part of the unknown. You wouldn't believe how many doctors I've seen that don't know what PTC/IIH is or how to treat it. Or....if they have heard of it, it's just from their medical books. They've never seen a case of it and if you can't take the regular medication for it, they don't know what to do.
I guess I'll begin to wrap this up for tonight, but I want to leave it on a positive note, because that is the only way that I'm going to be able to cope with this. So.....
One good thing that happened today was that I had a decent day at work with my students and with my lesson. The lesson went well despite feeling dizzy and when I was too dizzy to stand up, the students stepped in and I almost think it was better that way--it was rewarding to see them be able to grow as students and take more responsibility for their own learning. It was really cool.
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