Not sure what is going on, but have felt awful (even for me) the past 2 or 3 days. I require a TON of sleep. I either have a migraine or it is sitting right there on the brink of exploding into a full migraine. My brain can not think or process things. I feel heavy, but not my "normal" orthostatic (I need to lay down flat feeling). It is like the flu. It is weird. I am having times of being too hot, and uncharacteristic cold moments for me.
I had energy this morning that quickly drained away. It seems I have 4 hours of being able to barely function, and then I have to sleep for 4-8 hours to recover. And then repeat...
It is getting old. I am considering a migraine pill to see if I can get this one to go away. Don't like to take them too often, but I need to do something.
Monday, January 18, 2010
Friday, January 15, 2010
Nothing too exciting...
Recently things have not been all that exciting, so I have not felt I have much of any interest to write. I continue to be symptomatic and things change daily, but there is nothing out of my "norm".
Migraines continue to be one of the top issues. They are worsened by weather changes, hormones, and chemicals. Most recently anytime the smallest amount of bleach was used anywhere in the house, I was nauseous and had a migraine etc. for days. It took me a while to figure it out, and to get away from the smell.
Sleep is also still a HUGE issue. At least currently I tend to be able to get sleep it is just on a night owl's schedule.
I did get as a Christmas present some cooling pillows!!! They actually have seemed to help my sleep quite a bit, and are comfortable. I am quite happy with that purchase. I was not sure what I would get when I ordered them.
Migraines continue to be one of the top issues. They are worsened by weather changes, hormones, and chemicals. Most recently anytime the smallest amount of bleach was used anywhere in the house, I was nauseous and had a migraine etc. for days. It took me a while to figure it out, and to get away from the smell.
Sleep is also still a HUGE issue. At least currently I tend to be able to get sleep it is just on a night owl's schedule.
I did get as a Christmas present some cooling pillows!!! They actually have seemed to help my sleep quite a bit, and are comfortable. I am quite happy with that purchase. I was not sure what I would get when I ordered them.
Saturday, January 9, 2010
I may just try blogging again!?!
I keep wanting to get back into this blog and use it more, but it always seems like so much work... To have to pull it up, log in, etc... So, I always talk myself out of it. But, it does kinda help me keep things in a chronological order, so I thought I may give it another try...
Not sure where to start at all. I tried the Topamax and that did not go well, so I am no longer taking that. Then the dr. suggested increasing my Atenolol doseage. I seem to be tolerating that well, and it MAY be helping my migraines.
I have an appointment at Mayo at the end of February that will hopefully lead to some answers, help, etc...
Oh, and Springfield is so NOT a good city to try to find doctors. I will have to go to St. Louis or further to find any doctor other than my primary care doctor. Urrgghh!
Not sure where to start at all. I tried the Topamax and that did not go well, so I am no longer taking that. Then the dr. suggested increasing my Atenolol doseage. I seem to be tolerating that well, and it MAY be helping my migraines.
I have an appointment at Mayo at the end of February that will hopefully lead to some answers, help, etc...
Oh, and Springfield is so NOT a good city to try to find doctors. I will have to go to St. Louis or further to find any doctor other than my primary care doctor. Urrgghh!
Saturday, September 5, 2009
Wow, it has been a while! :)
Things got so hectic and busy for a while that it has taken me a while to get back to blogging. I had to wrap up everything and prepare to move back home, and then a month after moving back home I got to move out to Illinois. So, everything has been busy, and I haven't had the time or energy to post anything.
But, it would be nice to begin to post again, now that I am settled in!
One thing hasn't changed (if you check out the time stamp), I am still quite the insomniac! :)
But, it would be nice to begin to post again, now that I am settled in!
One thing hasn't changed (if you check out the time stamp), I am still quite the insomniac! :)
Thursday, May 14, 2009
Where have I been for 10 days???
I don't know... I was hoping someone could tell me?! :) LOL
Seems like it hadn't been that long since I last posted!
Let's see...
~ Finally got a hold of everyone I needed to... it took FOREVER!!!
~ I am off the Florinef, because it caused me to lose water weight (opposite rxn) and blood sugar spikes (with wonderful reactive hypoglycemia crashes).
~ Went to derm. for irregular hair loss pattern- not helpful at all, just another wham, bam, thank you ma'am... URRRGGGHH!!!
~ Went to rheumy... they didn't have me scheduled when I got there and fit me in, but dr. said I had been on her list when she looked a few days ago... Thanks random people for just canceling my appmt. and sticking someone else in my place! Appmt. was ridiculous. She was one of those drs. that starts out the appmt. in a very positive fashion and tells me EVERYTHING that she will not do, and that she will only look at rheumatology issues. NO big picture... well that is WHAT I AM HERE FOR!!! UUUUURRRRGGGGG!!!!!!
~ Now have a rheumy appmt at the Cleveland Clinic- I HOPE that this one will be much more beneficial!!!!
~ I also FINALLY have my Dr. Grubb in Toledo appmt. scheduled!!! HOORAY! :)
~ Sleep has now been better for a couple of days. But, it was awful for about 2 weeks. Not fun!!!
Seems like it hadn't been that long since I last posted!
Let's see...
~ Finally got a hold of everyone I needed to... it took FOREVER!!!
~ I am off the Florinef, because it caused me to lose water weight (opposite rxn) and blood sugar spikes (with wonderful reactive hypoglycemia crashes).
~ Went to derm. for irregular hair loss pattern- not helpful at all, just another wham, bam, thank you ma'am... URRRGGGHH!!!
~ Went to rheumy... they didn't have me scheduled when I got there and fit me in, but dr. said I had been on her list when she looked a few days ago... Thanks random people for just canceling my appmt. and sticking someone else in my place! Appmt. was ridiculous. She was one of those drs. that starts out the appmt. in a very positive fashion and tells me EVERYTHING that she will not do, and that she will only look at rheumatology issues. NO big picture... well that is WHAT I AM HERE FOR!!! UUUUURRRRGGGGG!!!!!!
~ Now have a rheumy appmt at the Cleveland Clinic- I HOPE that this one will be much more beneficial!!!!
~ I also FINALLY have my Dr. Grubb in Toledo appmt. scheduled!!! HOORAY! :)
~ Sleep has now been better for a couple of days. But, it was awful for about 2 weeks. Not fun!!!
Monday, May 4, 2009
Trying to stay awake, so why not UPDATE?! :)
So... I am trying to stay awake to call a drs. office this morning, and as you can see from my previous post I have been reading (but, hey enough is enough!). :) So, to keep myself busy I will update, after having fallen behind with so many days/nights with little sleep.
I have two appmts. this week. The dermatologist in regards to the odd hair loss pattern (neuropathy or not?) on my legs, and the rheumatologist. YES! I FINALLY got an appmt. with a rheumatologist, after that one secretary taking over a month to more or less pass on the referral baton. She never made an appmt. so finally the PCP made the appmt. That whole thing was just ridiculous!
I started Florinef a little over a week ago now. I have had mixed results on it. The biggest side effect has been weight loss (10 pounds), which I don't mind so much, EXCEPT this med is supposed to make you retain water and in turn gain weight. So, yet again I am having the exact opposite reaction. So, that is why I have to stay awake, is to call that drs. office. I called Fri. EARLY, but they never called me back!!! ERRRR!!! And I called back two or three times later in the day, but it went directly to voicemail. So, time for round two!
Sleep is still an issue. I FINALLY got FOUR solid hours yesterday during the day, and woke up to not knowing what day, time of day, or where I was. It didn't take me long to figure it out, but I was sleeping pretty hard! I then got another 1-2 hour nap in, and ran a couple of errands. Came back had dinner etc. I then got another 1-2hours sleep, and woke up wide awake unable to go back to sleep and have been awake since. Now I am getting tired and want to go to sleep, although I likely would have a difficult time... At least the storms of last week have gone through, it has gotten cooler, and the humidity is down. With the neuropathy one of the things that makes sleep the most difficult is humidity. I just can not get comfortable, and it continues to wake me up.
On Friday after 3-4 phone calls and having to wait a week for an answer, I finally got the answer from the cardiologists office that YES, I am supposed to be on both of the medications at the same time. My PCP had questioned this and made me call them, then earlier in the week they told me that NO according to the records I was only supposed to be on one of them, but that they would check. I never heard back, and had to make multiple calls, and talk to multiple people before I could get an actual answer! They had me worried that I had been taking the wrong meds for FOUR months! :(
I have two appmts. this week. The dermatologist in regards to the odd hair loss pattern (neuropathy or not?) on my legs, and the rheumatologist. YES! I FINALLY got an appmt. with a rheumatologist, after that one secretary taking over a month to more or less pass on the referral baton. She never made an appmt. so finally the PCP made the appmt. That whole thing was just ridiculous!
I started Florinef a little over a week ago now. I have had mixed results on it. The biggest side effect has been weight loss (10 pounds), which I don't mind so much, EXCEPT this med is supposed to make you retain water and in turn gain weight. So, yet again I am having the exact opposite reaction. So, that is why I have to stay awake, is to call that drs. office. I called Fri. EARLY, but they never called me back!!! ERRRR!!! And I called back two or three times later in the day, but it went directly to voicemail. So, time for round two!
Sleep is still an issue. I FINALLY got FOUR solid hours yesterday during the day, and woke up to not knowing what day, time of day, or where I was. It didn't take me long to figure it out, but I was sleeping pretty hard! I then got another 1-2 hour nap in, and ran a couple of errands. Came back had dinner etc. I then got another 1-2hours sleep, and woke up wide awake unable to go back to sleep and have been awake since. Now I am getting tired and want to go to sleep, although I likely would have a difficult time... At least the storms of last week have gone through, it has gotten cooler, and the humidity is down. With the neuropathy one of the things that makes sleep the most difficult is humidity. I just can not get comfortable, and it continues to wake me up.
On Friday after 3-4 phone calls and having to wait a week for an answer, I finally got the answer from the cardiologists office that YES, I am supposed to be on both of the medications at the same time. My PCP had questioned this and made me call them, then earlier in the week they told me that NO according to the records I was only supposed to be on one of them, but that they would check. I never heard back, and had to make multiple calls, and talk to multiple people before I could get an actual answer! They had me worried that I had been taking the wrong meds for FOUR months! :(
I READ a book!!!
Okay, it is now TWO books! But, it just seems like such an accompishment. Sounds REALLY stupid I know! BUT, for years I couldn't even keep up with required reading for school, so I did not do much leisure reading. Then, since being on all the meds etc. I have tried to read books a few times. I believe there was only one stretch of time, about a year ago, where I was able to SIT down and read a book!
Why is it such a hard task??? For one, the sitting still part is difficult. Due to a multitude of reasons. Restless Legs Syndrome, blood pooling causing the need to move around and fidget a lot, low blood pressure when sitting still, decreased blood flow to brain causing it to be difficult to understand and retain the information presented in a book. Not to mention the ADHD making a task that requires one to sit still and FOCUS on a book with words. I could probably handle a picture book, but I think I am past that point!!! Another thing that make reading difficult is migraines and their auras... I sit there reading and every few minutes I see spots out of the corner of my eye, something on the floor, or some other fun visual disturbance. It takes away the concentration from reading, makes one lose their place, and can make them see something else that they want to do across the room, and lose all attention towards the book they were reading. All this is without ANY significant pain, with any migraine pain, I do not try to read. It is too hard, and makes things worse!
How is that for an explanation on why being able to read a book is such an accomplishment?! :)
And I started my THIRD this morning!!!
YAY! For not being able to sleep! :)
Why is it such a hard task??? For one, the sitting still part is difficult. Due to a multitude of reasons. Restless Legs Syndrome, blood pooling causing the need to move around and fidget a lot, low blood pressure when sitting still, decreased blood flow to brain causing it to be difficult to understand and retain the information presented in a book. Not to mention the ADHD making a task that requires one to sit still and FOCUS on a book with words. I could probably handle a picture book, but I think I am past that point!!! Another thing that make reading difficult is migraines and their auras... I sit there reading and every few minutes I see spots out of the corner of my eye, something on the floor, or some other fun visual disturbance. It takes away the concentration from reading, makes one lose their place, and can make them see something else that they want to do across the room, and lose all attention towards the book they were reading. All this is without ANY significant pain, with any migraine pain, I do not try to read. It is too hard, and makes things worse!
How is that for an explanation on why being able to read a book is such an accomplishment?! :)
And I started my THIRD this morning!!!
YAY! For not being able to sleep! :)
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