Yes, that tends to be my groan/noise of frustration and right now it's running rampant through my head!
I'm frustrated on so many levels, I didn't even realize it was possible!
Work at the high school is going beautifully and I have no complaints there. I love my job and the kids I work with!
I'm busy still unpacking and trying to get my apartment set up and in order. I keep feeling like I will have plenty of time to get things figured out, and then I remember a bunch of little errands I need to do, and the time I thought I had isn't there anymore.
Work at Mathnasium is what is really frustrating me! I obviously can't go into it on here, but I'm quickly learning that even as I try to stand up for myself and my coworkers it isn't very helpful, or appreciated or respected fully. There is the chance that things might change, but how I am continually treated seems to outweigh the possibilities of the future.
After work I came home and had to set up my wireless network and router, which should have been easy but for some reason things didn't feel like working correctly. Luckily I walked through it all with my Dad on the phone but it was annoying in general.
Not to mention the fact that my head has decided maybe getting worse on a consistent basis would be a good idea. I haven't started my new medicine yet (still waiting for the prescription to be filled) but in general being in constant, worsening pain, is not making things any easier to handle.
There are a few positives though. I'm getting lunch with an old friend tomorrow and I know that will be mentally, and emotionally beneficial for me, as well as fun. My parents are coming into town this weekend (getting here Thursday night) which should be great. I haven't seen them in a little bit and it will be nice to have them here, instead of having to travel to NJ to see them. I also have a friends wedding to go to up at camp on Saturday which I'm super excited for!
I'm really just hoping that I can suppress/overcome my current frustrations and enjoy things.
Tuesday, September 27, 2011
Monday, September 26, 2011
Oh doctors...
Well it is time to update you all on the joys of chronic daily headache syndrome and my search for answers.
My hematologist came back and told me that my blood work is all normal except for the b12 deficiency. But that is easily managed with my monthly shots, so that was good news. Nothing to worry about as long as a take my b12 as directed!
I haven't been to a neurologist since I graduated college in 09. I basically gave up trying after that doctor told me "we've tried everything there is to try, and your just holding steady, so there isn't anything more I can do for you." Yep, being given up on by a doctor is really encouraging. Plus I was sick of trying different medications hoping for answers.
So today, I put aside my doubts and annoyances from previous doctors and met with another neurologist in town. To say I was anxious would be an understatement. For some reason doctors just make me nervous. I wasn't sure what to expect, but it went alright. She is a nice doctor and had looked through my information enough to know that I've jumped through a lot of hoops. I gave her the list of medications that I've already tried, and she was a little shocked by the length of it (almost 30). She also looked at my various CT and MRI reports. We talked for almost 40 minutes and she concluded that I am normal neurologically except for the headaches. She did tell me about an article she read that stated most people in my age group that suffer from daily chronic headaches tend to have them go away but that there is no way of knowing when or if that will happen, but that a majority of the the time, they will run it's course and just go away. While that is kind of reassuring it isn't a definite answer and it doesn't tell me how much longer I might be in pain. It also brings me back to the debate about whether or not I should hope for no pain or just be content to be in less pain and better able to function.
At the end she straight out told me that I have tried all of the basic medications that are used to treat these types of headaches. There are only a few classes of medications that are used and I've tried multiple things from each class. To hear that was kind of frustrating but I knew it was coming based on what my previous neurologist had told me. It came down to her deciding if it was worth jumping out of those typical classes and trying something totally different and kind of out of the blue or to just try something similar to, or exactly what I tried before. There aren't many things out there that would be new, so I'm going back to one of the first medications I tried in the beginning of this ordeal. She is hoping that my body has changed enough and that maybe it will effect me differently that it did almost 6 years ago. I was on a very high dose when I took it the last time and she thinks that it was too high which is why I had so many side effects (yay no appetite and weight loss). So instead of 100-200mg doses, I'm starting at 25mg and then tapering up to 50mg per day. This is in addition to the medication I'm already on. Who knows what will happen. I'm willing to try it for a while. I go back to see her in January and to see if anything has changed.
Am I hopeful that things will get better or change? Honestly not really. I've been on the medication before and it didn't work, but I do understand her logic that my body and headaches may have changed and may react to it now. I'm frustrated knowing that I've pretty much exhausted all of my options. I'm sick of being in pain and not being able to do the things that I want to, when I want to do them. Moving and unpacking while in extreme pain was not fun, but I didn't have a choice. As much as I have a high tolerance to pain, it would be nice to not have to limit myself, to not have to put a smile on my face and pretend everything is okay. Someday I would love to be pain free, or at least be completely honest with the people around me about what I'm experiencing but that hasn't happened for a while and I'm not too optimistic.
My hematologist came back and told me that my blood work is all normal except for the b12 deficiency. But that is easily managed with my monthly shots, so that was good news. Nothing to worry about as long as a take my b12 as directed!
I haven't been to a neurologist since I graduated college in 09. I basically gave up trying after that doctor told me "we've tried everything there is to try, and your just holding steady, so there isn't anything more I can do for you." Yep, being given up on by a doctor is really encouraging. Plus I was sick of trying different medications hoping for answers.
So today, I put aside my doubts and annoyances from previous doctors and met with another neurologist in town. To say I was anxious would be an understatement. For some reason doctors just make me nervous. I wasn't sure what to expect, but it went alright. She is a nice doctor and had looked through my information enough to know that I've jumped through a lot of hoops. I gave her the list of medications that I've already tried, and she was a little shocked by the length of it (almost 30). She also looked at my various CT and MRI reports. We talked for almost 40 minutes and she concluded that I am normal neurologically except for the headaches. She did tell me about an article she read that stated most people in my age group that suffer from daily chronic headaches tend to have them go away but that there is no way of knowing when or if that will happen, but that a majority of the the time, they will run it's course and just go away. While that is kind of reassuring it isn't a definite answer and it doesn't tell me how much longer I might be in pain. It also brings me back to the debate about whether or not I should hope for no pain or just be content to be in less pain and better able to function.
At the end she straight out told me that I have tried all of the basic medications that are used to treat these types of headaches. There are only a few classes of medications that are used and I've tried multiple things from each class. To hear that was kind of frustrating but I knew it was coming based on what my previous neurologist had told me. It came down to her deciding if it was worth jumping out of those typical classes and trying something totally different and kind of out of the blue or to just try something similar to, or exactly what I tried before. There aren't many things out there that would be new, so I'm going back to one of the first medications I tried in the beginning of this ordeal. She is hoping that my body has changed enough and that maybe it will effect me differently that it did almost 6 years ago. I was on a very high dose when I took it the last time and she thinks that it was too high which is why I had so many side effects (yay no appetite and weight loss). So instead of 100-200mg doses, I'm starting at 25mg and then tapering up to 50mg per day. This is in addition to the medication I'm already on. Who knows what will happen. I'm willing to try it for a while. I go back to see her in January and to see if anything has changed.
Am I hopeful that things will get better or change? Honestly not really. I've been on the medication before and it didn't work, but I do understand her logic that my body and headaches may have changed and may react to it now. I'm frustrated knowing that I've pretty much exhausted all of my options. I'm sick of being in pain and not being able to do the things that I want to, when I want to do them. Moving and unpacking while in extreme pain was not fun, but I didn't have a choice. As much as I have a high tolerance to pain, it would be nice to not have to limit myself, to not have to put a smile on my face and pretend everything is okay. Someday I would love to be pain free, or at least be completely honest with the people around me about what I'm experiencing but that hasn't happened for a while and I'm not too optimistic.
Busy Weekend!!
Who knew so much could happen in just a few days.
Work went fine the rest of last week. Things were busy as usual but nothing too out of the ordinary. I'm still waiting to talk with my bosses to look for some solutions to the concerns that I have, but hopefully it will happen in the next few days.
Friday I got home around 2pm and started packing. Let's just say I was shocked that I owned so much stuff. I always forget how much I can accumulate in a year, and how much I keep that I really should just throw away. So for about 8 hours on Friday I did just that. I went through boxes that had been in the basement since I moved in and actually threw things out. Notes from college and high school aren't something I need to have taking up space so I threw them out. I went through all of my clothing and found 2 bags worth of stuff to donate because I don't really wear it. And I packed up my room, which was a lot of stuff.
Saturday, I got up and packed the stuff in the kitchen in about an hour and a half. I'm not sure how everything got done, but it did, and in time for a bunch of amazing friends to come help me move everything. 6 friends helped me move! We had a minivan and 4 cars and all of my stuff fit in only one load. We moved quickly, everything packed into cars, driven over to the new place, and unpacked into the apartment in an hour and a half. I was amazed how much we were able to get done and how quickly it all happened. I was also overwhelmed with how much stuff I had to now unpack!
After a nice lunch (of mainly breakfast food) out with friends I started the unpacking process. I got my bed set up and then got the rest of the furniture in my room in place before getting ready to have dinner and hang out with friends. It was a nice break to be able to eat and play games with some great people! I definitely needed to get out of the mess of packing/moving/unpacking for a few hours and just be social!
Sunday it was back to unpacking and trying to make at least my room habitable. I was quite successful! I got 8 hours of sleep and started unpacking right away. By lunch time I had clothing hung in the closet and my books on the bookshelves. By dinner time my room was fully unpacked and I was working on homework for grad school. Below are a few pictures of my room.
This is from the doorway of my room. So when you walk in your are directly across from the window and my bed and bookshelf are off to the right.
Work went fine the rest of last week. Things were busy as usual but nothing too out of the ordinary. I'm still waiting to talk with my bosses to look for some solutions to the concerns that I have, but hopefully it will happen in the next few days.
Friday I got home around 2pm and started packing. Let's just say I was shocked that I owned so much stuff. I always forget how much I can accumulate in a year, and how much I keep that I really should just throw away. So for about 8 hours on Friday I did just that. I went through boxes that had been in the basement since I moved in and actually threw things out. Notes from college and high school aren't something I need to have taking up space so I threw them out. I went through all of my clothing and found 2 bags worth of stuff to donate because I don't really wear it. And I packed up my room, which was a lot of stuff.
Saturday, I got up and packed the stuff in the kitchen in about an hour and a half. I'm not sure how everything got done, but it did, and in time for a bunch of amazing friends to come help me move everything. 6 friends helped me move! We had a minivan and 4 cars and all of my stuff fit in only one load. We moved quickly, everything packed into cars, driven over to the new place, and unpacked into the apartment in an hour and a half. I was amazed how much we were able to get done and how quickly it all happened. I was also overwhelmed with how much stuff I had to now unpack!
After a nice lunch (of mainly breakfast food) out with friends I started the unpacking process. I got my bed set up and then got the rest of the furniture in my room in place before getting ready to have dinner and hang out with friends. It was a nice break to be able to eat and play games with some great people! I definitely needed to get out of the mess of packing/moving/unpacking for a few hours and just be social!
Sunday it was back to unpacking and trying to make at least my room habitable. I was quite successful! I got 8 hours of sleep and started unpacking right away. By lunch time I had clothing hung in the closet and my books on the bookshelves. By dinner time my room was fully unpacked and I was working on homework for grad school. Below are a few pictures of my room.
This is a picture from my closet. At the end of my bed there is some space and then the closet. Looking diagonally across the room you see the window, my desk, and the same bookshelf from the picture above.
I was standing right by the window when I took this picture. There will be a dresser where the bags and piles of stuff are. My parents are stopping by IKEA on there way here this weekend and picking me up a dresser among other things! You can also see where the closet it to give you some perspective in the room.
Last picture for now, but this one is from my bed towards the door. Yes another bookcase full of books! I got rid of 4 bags of books and yet still have a lot!
There you have it. I'm still unpacking the kitchen over the next few days but hope to have things pretty much set up by this weekend. I have some amazing friends and have been blessed by them beyond belief! Thank you all so much!
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