Aa
New Monday's Calendar
This is a new thing we will do each Monday.
Let's list all the important things that are going on with us for this week. Having severe Teflon Brain I can't remember anything one week to the next, but often can during one week
Things we can list so that everyone knows:
Upcoming important Doctor Visits
Lab Tests this week
Important events that we need support for
Birthdays
Lets give this a whirl for several weeks and see if it is useful.
Quix
Let's list all the important things that are going on with us for this week. Having severe Teflon Brain I can't remember anything one week to the next, but often can during one week
Things we can list so that everyone knows:
Upcoming important Doctor Visits
Lab Tests this week
Important events that we need support for
Birthdays
Lets give this a whirl for several weeks and see if it is useful.
Quix
work, work, work, work...and did I mention work???? LOL.
Start on the giant soccer balls for the high school senior boys and girls (although my son graduated in '05)... again LOL
Penn (sorry it's not Monday - pretend it is)
Start on the giant soccer balls for the high school senior boys and girls (although my son graduated in '05)... again LOL
Penn (sorry it's not Monday - pretend it is)
Hah! Like Quix has time to keep up with our lives! I'm sure she has enough to do...
Missed this on Monday, cause I was feeling poorly...
Monday 9:15 - Went to PCP for shortness of breath, seizures, and to talk about Aricept. She gave me a sample inhaler for the shortness, but it's not helping, and recommended I talk to my neuro about seizures and aricept. Called the neuro office that day, and got in! That never happens.
Went to neuro at 4:00. Neuro wants me to keep an eye on the seizures. He wanted to know if I wanted anti-seizure medication, I said no. I haven't had one since August 23rd, and it always happens when I'm having MS fatigue and other symptoms. But I'm supposed to keep an eye on it, and let him know if I have any more.
No comment on the shortness of breath.
After I left the exam room, and was checking out, I remembered that I wanted to talk to him about Aricept - I got the attention of one of the nurses, and we went back into the exam room. He looked a little irritated at me! He thought that Aricept would be a bad idea, as it's usually for people with severe impairment - Alzheimers and so forth. There's also those side effects that Heather talked about. I agreed that the side effects were not casual, and made sure he understood I just wanted to see if it would work. He's given me a month's worth of Aricept samples, and we'll see what happens. It's supposed to be a month before it starts working. If I have any adverse side effects, I'm not going to continue to take it - it would severely affect quality of life. (Fecal incontinence was mentioned - eek!)
So an eventful Monday for me.
Missed this on Monday, cause I was feeling poorly...
Monday 9:15 - Went to PCP for shortness of breath, seizures, and to talk about Aricept. She gave me a sample inhaler for the shortness, but it's not helping, and recommended I talk to my neuro about seizures and aricept. Called the neuro office that day, and got in! That never happens.
Went to neuro at 4:00. Neuro wants me to keep an eye on the seizures. He wanted to know if I wanted anti-seizure medication, I said no. I haven't had one since August 23rd, and it always happens when I'm having MS fatigue and other symptoms. But I'm supposed to keep an eye on it, and let him know if I have any more.
No comment on the shortness of breath.
After I left the exam room, and was checking out, I remembered that I wanted to talk to him about Aricept - I got the attention of one of the nurses, and we went back into the exam room. He looked a little irritated at me! He thought that Aricept would be a bad idea, as it's usually for people with severe impairment - Alzheimers and so forth. There's also those side effects that Heather talked about. I agreed that the side effects were not casual, and made sure he understood I just wanted to see if it would work. He's given me a month's worth of Aricept samples, and we'll see what happens. It's supposed to be a month before it starts working. If I have any adverse side effects, I'm not going to continue to take it - it would severely affect quality of life. (Fecal incontinence was mentioned - eek!)
So an eventful Monday for me.
If you post a calendar maybe we would all remember the important things in our lives! Thanks for all your efforts on our behalf.
Laura
Laura
There are many compounding pharmacies that do their stuff via mail. I don't know them or how to find or evaluate them, but I can ask around. One of our member's, Siddy, husband is one and she might be able to give us a clue. I'll give her the heads up.
Another idea. Since the neuro prescribed it, he has to rely on one also. They should be able to Next Day mail your meds to you. That's what I did when I was prescribed SERC. The compounding pharmacy was deep in the heart of Portland and a devil of a drive for me, so they just expressed it to me.
As I look at this, it would seem that linking a virtual calendar would be a far more efficient way of showing this info.
Quix
Another idea. Since the neuro prescribed it, he has to rely on one also. They should be able to Next Day mail your meds to you. That's what I did when I was prescribed SERC. The compounding pharmacy was deep in the heart of Portland and a devil of a drive for me, so they just expressed it to me.
As I look at this, it would seem that linking a virtual calendar would be a far more efficient way of showing this info.
Quix
Had 3-month follow-up for the fingolimod (FTY720) trial on Monday. Not much to say. If I'm taking the drug, it doesn't seem to be doing anything. At least I'm not getting any side effects.
Neuro gave me a prescription for 4-Aminopyridine, which he thinks might help me walk better. Unfortunately, you can only get this stuff at a "compounding pharmacy" where they mix up their own stuff and there isn't one here so I'm still working on that.
sho
Neuro gave me a prescription for 4-Aminopyridine, which he thinks might help me walk better. Unfortunately, you can only get this stuff at a "compounding pharmacy" where they mix up their own stuff and there isn't one here so I'm still working on that.
sho
I guess I'm a day late and a dollar short, lol. I know I haven't been around much at all for a while now....have been feeling pretty crummy basically all the time these days...
But as of yesterday I am officially of the Rebif and flying without a net.. :) I got insurance approval for the Tysabri and it is affordable, so my first infusion is set for October 3rd. I'm now in the washout period to get the interferon out of my system, and a little edgy....been having some new things creeping up and some old ones being a little more insistent. Crossing my fingers that my body doesn't do anything obnoxious while I'm off all MS treatment, but it's a relatively short time, so that makes me feel better....
Any positive thoughts for this stretch and for the first infusion are welcome and appreciated......:) You guys are awesome, and hopefully soon I'll feel good enough to hang around some more...
Thanks,
Rita
But as of yesterday I am officially of the Rebif and flying without a net.. :) I got insurance approval for the Tysabri and it is affordable, so my first infusion is set for October 3rd. I'm now in the washout period to get the interferon out of my system, and a little edgy....been having some new things creeping up and some old ones being a little more insistent. Crossing my fingers that my body doesn't do anything obnoxious while I'm off all MS treatment, but it's a relatively short time, so that makes me feel better....
Any positive thoughts for this stretch and for the first infusion are welcome and appreciated......:) You guys are awesome, and hopefully soon I'll feel good enough to hang around some more...
Thanks,
Rita
Going to my first neuro appt today at3:30. At the advice of all you wonderful folks I have written and read and rewritten my timeline and constent symptoms for the doc. Going with a positive attitude but also with questions and hopefully answers..taking my Mom to be a listener..ONLY, doubt that will happen! I am so thankful for this forum and all of you. When I talk to friends about what is happening to me right now and how we just don't know what IT is..I let them know that there are SO MANY folks out here in this big ole world that are experiencing that very same thing and that the not knowing is the toughest part of all..so you are all in our prayers...
big hugs to all,
Jerrie still swayin in Texas
ps.love the spell check idea!
big hugs to all,
Jerrie still swayin in Texas
ps.love the spell check idea!
Still waiting on lots of bloodwork to come back, maybe this week (Lyme, vit. B12, lupus?)
Cervical spine MRI next monday sept. 15 Very anxious to get it over with (bring on the valium!)
My bday was last friday sept 5. Was reminded over and over that I only two years until the "big one" 40. Of course 40 is the new 30. *blowing raspberries*
Cervical spine MRI next monday sept. 15 Very anxious to get it over with (bring on the valium!)
My bday was last friday sept 5. Was reminded over and over that I only two years until the "big one" 40. Of course 40 is the new 30. *blowing raspberries*
Where do we list this stuff for now? Here? Until the Calendar comes along?
I think I have the the spatula stuck in my teflon today....
Someone please splain...
-Shell
I think I have the the spatula stuck in my teflon today....
Someone please splain...
-Shell
Recovering from my LP last week, battling a nasty head cold and waiting on results this week~just asking prayers that we can get some answers from the LP.
Hugs,
Shelley : )
Hugs,
Shelley : )
I don't know if this is possible, but it sure would be a blessing, at least to me... Brain Flutters...you know..
A spell check for our postings, notes & journaling. I know this isn't an easy one, but it would be lovely.. I keep my little hand held spell check by my computer...Using it always slows me down...
This is just a thought... The calendar idea also sounds great...
Hugs...Shadow..(DJ)
A spell check for our postings, notes & journaling. I know this isn't an easy one, but it would be lovely.. I keep my little hand held spell check by my computer...Using it always slows me down...
This is just a thought... The calendar idea also sounds great...
Hugs...Shadow..(DJ)
Sorry I did not read this before posting question but I think it was past midnight. LOL!
chick
chick
Flying up to NYU tomorrow and coming back thursday (9-11th of Sept) - I get seriously sick on planes- Bleck!
PCP appt. on Friday for cough.
~Sunnytoday~
PCP appt. on Friday for cough.
~Sunnytoday~
A thought - it would be great if there was a virtual calendar connected to this site that everyone could access and post things to on specific dates. Then we could just go to the calendar and pull up the day and see what's happening in our lives! There is such a calendar out there on google, I think.Or at least that's what I remember.
I'll take all of your well wishes for my lumbar puncture tomorrow - and no, I am not making the trip to Chicago at the end of the week, thanks to the advice of everyone here! - Laura
I'm all for this, Is this going to be a thread that we are going to keep bumped to the top? and then repeat a new one each week... or something different? Sorry, I HAVE a teflon brain today, i answered the phone with my sister's name this evening. Ahem... talk about EMBARRASSING!!!!!!
This sounds neat!!!
~Sunnytoday~
This sounds neat!!!
~Sunnytoday~
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