No March madness excitement for me but March sure is driving me mad. I'm so glad March is almost over. I'm sick of this temperamental weather. Literally I am just sick from the constant weather changes. It gives me migraines and turns out my MS doesn't like it much either. The beginning of March I was fighting against the snow and ice but lately I have been fighting against the heat.
I have never handled heat well. Getting heat stroke on many family trips was evidence of that. It doesn't matter how much I drink, I don't sweat. Even when I ran a half marathon I didn't break a sweat. On the rare occasions where I do sweat it doesn't cool my body off. So I gave up my childhood dream of being a paleontologist and I try to drink more. Turns out when you have nerve damage you become even more sensitive to the heat. The warm days lately have been making my head foggy and my hands numb. Anything above 78 degrees and I start to melt.
Most people with MS struggle with the heat but I'm lucky and my MS affects me in cold as well. My numb feet can't detect ice so I just walk like a penguin everywhere. And if the temperature drops less then 34 ish it makes my spasticity much worse. Do you remember the old GI Joe miniatures? The ones with the rubber bands as legs muscle? If you stretched their legs too far the rubber band would snap and then they became a wounded solider with one less leg. Well that's about how I feel when I walk in the cold. I mean my leg doesn't actually snap off but it feels like it is going to.
So I'm ready for Wisconsin weather to pick a season or just stay at 70 all the time. So glad March is almost over. And another reason I'm excited for April is then it is only a few days til we leave for China!
Thursday, March 29, 2012
Monday, March 12, 2012
Exciting News
So apparently I should have phrased that I have exciting news better. No, I'm not pregnant. And I guess this news may not be as exciting for you as it is for me. Anyways, my husband and I are going to China for my spring break! We will be spending a week in Beijing. We might being staying a little longer but we aren't sure yet. I found a great deal on Groupon so we decided to go. For less than the price of round trip air, we have a tour package that includes all transportation including flights, almost all meals and all admission fees. We weren't really planning on going to China but we both wanted to go there. It just wasn't on the top of the travel list because of the cost. But the great price bumped it up a bit.
We will be visiting the Great Wall, a jade factory, the Olympic city, the Forbidden city, Tiananmen Square, the Summer Palace, a silk factory, the Capital Museum, and the Temple of Heaven. We will also being going on a rickshaw tour of the markets and for tai chi lesson in a park. Special food treats include a Peking duck dinner, dinner at a local families' house and visits to a tea house. We will being visiting some other stuff on our own as well but not totally sure what yet.
I have been trying to build my endurance lately so I won't need any assistance on the trip. We got a walker since I still don't have a wheelchair yet and the wheelchair won't work well with the steps. China isn't very handicap accessible or gluten-free friendly from what I have read. Unfortunately, there are not many tips I have found about how to adjust for this. Do you have any tips? I hope to bring back lots of information for others like me who maybe considering a trip to China.
We will be visiting the Great Wall, a jade factory, the Olympic city, the Forbidden city, Tiananmen Square, the Summer Palace, a silk factory, the Capital Museum, and the Temple of Heaven. We will also being going on a rickshaw tour of the markets and for tai chi lesson in a park. Special food treats include a Peking duck dinner, dinner at a local families' house and visits to a tea house. We will being visiting some other stuff on our own as well but not totally sure what yet.
I have been trying to build my endurance lately so I won't need any assistance on the trip. We got a walker since I still don't have a wheelchair yet and the wheelchair won't work well with the steps. China isn't very handicap accessible or gluten-free friendly from what I have read. Unfortunately, there are not many tips I have found about how to adjust for this. Do you have any tips? I hope to bring back lots of information for others like me who maybe considering a trip to China.
Monday, February 27, 2012
School update
School has been going alright now that I am going to the correct campus. And I have not done the wrong homework for awhile. Silly classes taught by the same teacher with very similar coursework. At least it was going pretty well until this last week.
All the sudden on Tuesday I had numbness and pain in my right foot. We were supposed to have a class field trip that day. The professor and I spent a lot of trying to figure out how the field trip would work so it won't be too much walking before I had to drive again and then I wasn't even able to drive to the field trip. It is good I didn't try to drive because my the end of the day, I wasn't able to put any pressure on my foot without a good dose of pain. Thankfully, the professor is going to go overview the highlights with me tomorrow.
But my MS decided that it needed to interrupt my homework schedule even more. On Wednesday, my right hand was in so much pain it felt like my fingers were broken. No idea what caused this. Sometimes I still have hand muscle cramps from over use but it wasn't like that. It just hurt if I moved my hand at all. This pretty much through Friday so I really wasn't able to get any homework done. The super bad fatigue didn't help either. I managed to just barely finish all my homework by working the whole weekend. It looks like my workload is only going to increase from here so I hope my MS will start behaving a bit more. I'm so grateful that most of my classes are online otherwise I would be crazy behind right now. Right now it's all A's and I'm keeping up with the coursework.
I have news about my last brain MRI and neurologist appointment. I'll post more about that later hopefully with some sweet looking pictures. I have some other exciting news that I'll share soon as well. In the meantime, enjoy this video. http://work.failblog.org/2012/02/24/job-fails-tigger-dougie-summer-job/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+MthruF+%28Monday+Through+Friday%29
All the sudden on Tuesday I had numbness and pain in my right foot. We were supposed to have a class field trip that day. The professor and I spent a lot of trying to figure out how the field trip would work so it won't be too much walking before I had to drive again and then I wasn't even able to drive to the field trip. It is good I didn't try to drive because my the end of the day, I wasn't able to put any pressure on my foot without a good dose of pain. Thankfully, the professor is going to go overview the highlights with me tomorrow.
But my MS decided that it needed to interrupt my homework schedule even more. On Wednesday, my right hand was in so much pain it felt like my fingers were broken. No idea what caused this. Sometimes I still have hand muscle cramps from over use but it wasn't like that. It just hurt if I moved my hand at all. This pretty much through Friday so I really wasn't able to get any homework done. The super bad fatigue didn't help either. I managed to just barely finish all my homework by working the whole weekend. It looks like my workload is only going to increase from here so I hope my MS will start behaving a bit more. I'm so grateful that most of my classes are online otherwise I would be crazy behind right now. Right now it's all A's and I'm keeping up with the coursework.
I have news about my last brain MRI and neurologist appointment. I'll post more about that later hopefully with some sweet looking pictures. I have some other exciting news that I'll share soon as well. In the meantime, enjoy this video. http://work.failblog.org/2012/02/24/job-fails-tigger-dougie-summer-job/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+MthruF+%28Monday+Through+Friday%29
Sunday, February 5, 2012
First day back
I certainly hope my first day of school was easier then my first day going back to school. I don't remember anything about my first day but somewhere their is a goofy picture with me and a backpack that looks giant on me. It very well might have been a Teenage Mutant Ninja Turtles backpack.
Back to the land of 2011. Err 2012. Don't worry I'll stop 2011 on things in a few months. So I went to school early to pay tuition. It was a nightmare, they have overcharged me three times right now. After a brief lunch I went off to find my classroom. I'm a nerd so I always arrive super early so I can sit right up front. I went to the A building where my class was and room 120 was a small lounge area filled with vending machines. Didn't quite seem like the right place so I walked the couple blocks back to the main building. My schedule did say main building a120. Walked around for awhile and discovered that a120 was the where it said conseling. I was even more confused because I had no clue where my class was supposed to be and shouldn't the sign say counseling not conseling? Against my instincts I went in and asked for directions. Yep my schedule said main building a120 alright but in Oak Creek. I was in West Allis. And class started in 10 minutes.
I quick got directions and hit the road. I got totally lost. I may have entered Illinois briefly. No clue where I went or how I got there. I frantically called the hubbie. Luckily I caught him during lunch and he picked up (apparently I have a habit of getting lost and calling and needing directions right when he is in the middle of a meeting). With directions I was on my way again until I ran out of gas. It's ok I pulled into the gas station just in time. I made it to class and I was only over an hour late. Google says it is a 20 minute commute.
It was a rough first day back. I was exhausted and in pain from all that wandering around trying to find the write room at the wrong campus. I was ready to just go home and skip the class. It was really making me question whether or not this going back to school thing was a good idea. At least I didn't really miss much in class. The rest of the class worked on a get-to-know-you-partnership. I had to do a short write up instead.
Back to the land of 2011. Err 2012. Don't worry I'll stop 2011 on things in a few months. So I went to school early to pay tuition. It was a nightmare, they have overcharged me three times right now. After a brief lunch I went off to find my classroom. I'm a nerd so I always arrive super early so I can sit right up front. I went to the A building where my class was and room 120 was a small lounge area filled with vending machines. Didn't quite seem like the right place so I walked the couple blocks back to the main building. My schedule did say main building a120. Walked around for awhile and discovered that a120 was the where it said conseling. I was even more confused because I had no clue where my class was supposed to be and shouldn't the sign say counseling not conseling? Against my instincts I went in and asked for directions. Yep my schedule said main building a120 alright but in Oak Creek. I was in West Allis. And class started in 10 minutes.
I quick got directions and hit the road. I got totally lost. I may have entered Illinois briefly. No clue where I went or how I got there. I frantically called the hubbie. Luckily I caught him during lunch and he picked up (apparently I have a habit of getting lost and calling and needing directions right when he is in the middle of a meeting). With directions I was on my way again until I ran out of gas. It's ok I pulled into the gas station just in time. I made it to class and I was only over an hour late. Google says it is a 20 minute commute.
It was a rough first day back. I was exhausted and in pain from all that wandering around trying to find the write room at the wrong campus. I was ready to just go home and skip the class. It was really making me question whether or not this going back to school thing was a good idea. At least I didn't really miss much in class. The rest of the class worked on a get-to-know-you-partnership. I had to do a short write up instead.
Tuesday, January 31, 2012
Back to school
Kinda at the last minute I decided to sign up for classes at MATC (local community college). By last minute, I registered for classes 2 days before they started. It has been a bit of an internal debate about whether or not I should go back this semester but I finally decided that I want to. There was a brief period where I was considering not going back at all. I just wondered what was the point if there is no way to know how long I would be able to work. I didn't want to spend all the time in school and then only end up working at my career for a year or two. I have know way of knowing how long I might be able to work, and I still won't like it if it were only for a short period, but I have determined that finishing college is still important to me.
I am glad that I took last semester off because I wouldn't have been able to have finished all my classes. It just would have been too much with all the doctor visits and the feeling terrible. I'm feeling less terrible so I'm hoping I can handle this semester. I signed up for "easy" classes, ie no calculus or physics. I hope to go back to MSOE in the fall (to finish my dual degree in mechanical engineering and business management) so this is kinda like a test run. I'm taking four classes and all but one of them are online. I only have to drive to campus one day a week. Hopefully, this means I'll be able to do my work when I'm having a good day and won't have to worry as much about trying to get to school if the weather is bad.
Registering for classes was interesting. I was registering later so that limited my choices. Then I was looking for "easy" classes that transferred that were scheduled at a campus close to me. I didn't want classes that started before 10am and ended later then 3pm. And I wanted to minimize the number of days I was driving. Despite all these restraints, I seemed to have found a schedule that works. I'm taking a leadership principles class, supply chain management, personal selling and supervision. The leadership and supervision class are a bit confusing because the same professor teaches them, the course number is only one digit different, and right now the material is very similar.
Other than the first day I'm off to a great start but more on that later.
I am glad that I took last semester off because I wouldn't have been able to have finished all my classes. It just would have been too much with all the doctor visits and the feeling terrible. I'm feeling less terrible so I'm hoping I can handle this semester. I signed up for "easy" classes, ie no calculus or physics. I hope to go back to MSOE in the fall (to finish my dual degree in mechanical engineering and business management) so this is kinda like a test run. I'm taking four classes and all but one of them are online. I only have to drive to campus one day a week. Hopefully, this means I'll be able to do my work when I'm having a good day and won't have to worry as much about trying to get to school if the weather is bad.
Registering for classes was interesting. I was registering later so that limited my choices. Then I was looking for "easy" classes that transferred that were scheduled at a campus close to me. I didn't want classes that started before 10am and ended later then 3pm. And I wanted to minimize the number of days I was driving. Despite all these restraints, I seemed to have found a schedule that works. I'm taking a leadership principles class, supply chain management, personal selling and supervision. The leadership and supervision class are a bit confusing because the same professor teaches them, the course number is only one digit different, and right now the material is very similar.
Other than the first day I'm off to a great start but more on that later.
Monday, January 23, 2012
Drugs are working?
I have been on Gilenya for a month now. People keep asking if it is working and I have no idea. It is too soon to tell. Even if i had been on the drug for a few months the only way to know how the drug is working is through an MRI. And even if there are fewer lesions, active or not, on the MRI that doesn't mean that it is because of the drug. I could just be "in remission". And my MS could be progressing without any bad stuff showing up. Bad stuff referring to new or active lesions, brain shrinkage or any of other that fun stuff. It doesn't seem fair that I can get worse without it showing up but I suppose that's pretty much why MS is so hard to treat.
Anyways, I think I'm doing well on it. I haven't had any new flare ups since I started the Gilenya. My symptoms don't seem to be getting worse. For awhile it seemed like my legs were almost totally back to normal but now they can be good or bad at anytime again. I have experienced very few side effects from the Gilenya. For the first few days, it was extremely painful if I wasn't laying down with my back straight but now the back pain is completely gone. The only side effect I have now is dry skin which is just horrible. Just kidding, it isn't that bad at all but if you know of a good scalp lotion please let me know. And I have either another month or three month supply coming for free on Friday. I get to spend 12 hours waiting at home because apparently I'm the only one that can sign for it? Whatever, kinda a small sacrifice for free drugs. All in all I can't really complain.
Anyways, I think I'm doing well on it. I haven't had any new flare ups since I started the Gilenya. My symptoms don't seem to be getting worse. For awhile it seemed like my legs were almost totally back to normal but now they can be good or bad at anytime again. I have experienced very few side effects from the Gilenya. For the first few days, it was extremely painful if I wasn't laying down with my back straight but now the back pain is completely gone. The only side effect I have now is dry skin which is just horrible. Just kidding, it isn't that bad at all but if you know of a good scalp lotion please let me know. And I have either another month or three month supply coming for free on Friday. I get to spend 12 hours waiting at home because apparently I'm the only one that can sign for it? Whatever, kinda a small sacrifice for free drugs. All in all I can't really complain.
Thursday, January 19, 2012
I'm not dead yet
I haven't written in a while because I haven't known what to say. I have a lot rumbling through my mind that I'd like to write about but I have figured out how to accurately put them into words or complete thoughts yet.
I never did follow up with the ophthalmologist like I was supposed to after my ER visit. They would have dilated my eyes and everything which I need to lay down for a few hours after otherwise I get a bad migraine. I didn't want to miss my extended family's Christmas party so I didn't go. I'm glad I skipped going since that was the first time the entire family was together in three years and it was nice to see everyone.
Anyways I talked to my doctor and the doctor who was on call. They think the steroids had raised my blood sugar which is what caused my messed up vision. The call doctor had wanted the ER to take my blood sugar but they didn't so we will never really know the cause. I didn't see the eye doctor when I was there either so the whole trip was kinda moot and a waste of time. Oh well, at least insurance paid for the whole thing. It is a little worrisome that I have never had a reaction to the steroids before and then this popped up. I was on antibiotics at the time and they could have speed up the metabolism rate of the steroids? Not sure but I'm glad that Dr. Maas isn't saying no more steroids in the future. They make me feel so good I don't want to give them up.
After the Christmas party we drove down to visit my family in Tennessee. It was a nice trip but I feel bad because my health limited what we did. I had some bad fevers and just overall wasn't feeling good. Seems like I spent half the trip laying down. Apparently all that resting just wasn't enough because since we got home I have had pretty bad fatigue.
2012 is off to a great start? I guess I can't really complain because so far no doctor appointments. Soon...I have another dozen appointments coming up in a week or two. Most of which I need to schedule yet...hey it's been nice pretending that I don't need to go. Wow can you believe that January is almost over already? Maybe it is just me because I have been Lady Van Winkle lately but I keep thinking its like January 6th.
I never did follow up with the ophthalmologist like I was supposed to after my ER visit. They would have dilated my eyes and everything which I need to lay down for a few hours after otherwise I get a bad migraine. I didn't want to miss my extended family's Christmas party so I didn't go. I'm glad I skipped going since that was the first time the entire family was together in three years and it was nice to see everyone.
Anyways I talked to my doctor and the doctor who was on call. They think the steroids had raised my blood sugar which is what caused my messed up vision. The call doctor had wanted the ER to take my blood sugar but they didn't so we will never really know the cause. I didn't see the eye doctor when I was there either so the whole trip was kinda moot and a waste of time. Oh well, at least insurance paid for the whole thing. It is a little worrisome that I have never had a reaction to the steroids before and then this popped up. I was on antibiotics at the time and they could have speed up the metabolism rate of the steroids? Not sure but I'm glad that Dr. Maas isn't saying no more steroids in the future. They make me feel so good I don't want to give them up.
After the Christmas party we drove down to visit my family in Tennessee. It was a nice trip but I feel bad because my health limited what we did. I had some bad fevers and just overall wasn't feeling good. Seems like I spent half the trip laying down. Apparently all that resting just wasn't enough because since we got home I have had pretty bad fatigue.
2012 is off to a great start? I guess I can't really complain because so far no doctor appointments. Soon...I have another dozen appointments coming up in a week or two. Most of which I need to schedule yet...hey it's been nice pretending that I don't need to go. Wow can you believe that January is almost over already? Maybe it is just me because I have been Lady Van Winkle lately but I keep thinking its like January 6th.
Subscribe to:
Posts (Atom)