Alright, it has been brought to my attention that I need to update this thing, lol, and I also should keep people up to date on how the changes in my medicine is going. So, here we go....hold on to your seats!
After 9 weeks of slowing going onto this medicine 25 mg a week, I am now on my full dosage, 100 mg twice a day. So far, I have been seizure free for a month, but I am also still on my old medicine, that won't go away until at least Feb. The Topamax is not without it's side effects, unfortunately, but thankfully they are ones I have been able to deal with so I can stay on this medicine. At this very moment I cannot feel my hands nor my feet. 90% of the time they have a pins and needles feeling, and then sometimes I cannot feel them at all. It's a rather annoying, yet very common, side effect. I have to do some things a little slower, but so far it has not effected my walking or anything, so praise God for that! Topamax can also cause rapid weight loss. When they first told me this I laughed at them, because they also told me it could cause anorexia, which just sounded funny because you think of someone that is anorexic as thinking they are fat.........how is this medicine going to make me think I am fat?! Lol, okay, it's really not funny though, and about a week ago I stopped laughing about it. Normally I wear size 3 or 5 jeans......I would rather wear my 5's because they are more comfortable, but on this particular day they felt huge, so I put on my 3's. My 3's were also too big...........that's never happened. So, I went over to my mother-in-law's house (she lives behind me) and weighed myself. I only weighed 107 pounds, which means since New Years Day, I had lost 12 pounds. I don't have 12 lbs to lose! I immediately began to panic, but came back over and told Brandon. Everyone keeps telling me I just need to eat............eat, eat, eat, eat, and eat some more. Sorry people, but I can only eat so much! I don't like being this low in weight and I am also afraid they will want to take me off the Topamax, since I have lost 20 lbs since I saw them in October. So I went to the doctor on Monday to find a healthy way to put on weight and try to keep it stable. He said that as unfortunate as it was, it probably wouldn't ever be stable with this medicine, it's just the way it works, but there are definitely things I can do. I weighed 104 that day...........under 100 and they discuss putting me in the hospital until I hit a target weight. So now I am going to be drinking protein drinks/shakes..........eating lots of things with protein in it. I have to drink 3 glasses of milk a day.......yuck, I hate milk, lol, so it'll be chocolate milk! :) I have to eat 6 meals a day and keep a food journal and weigh weekly. So, please keep me in your prayers, this is not fun at all, but this medicine really seems to be doing something and I want the opportunity to try it without my old medicine too. I go back to the neurologist on Feb. 18 and as long as he thinks everything is fine, he will start weaning me off of my old medicine.......so I will keep everyone up to date!
Thursday, January 29, 2009
Tuesday, November 11, 2008
God Bless the FDA
I suppose on a day such as this, Veterans Day, I should be saying 'God Bless the USA'. But today is unlike any other day for me. I recently went to a neurology appointment in which they decided to put me on new medicine. I was nervous, but excited, so I went to get it filled.
For the first batch of medicine, it was going to cost $550.........for the full dose, it was going to be $4,400.00 every month. I am by no means a rich person, and I don't have insurance, so this seemed like a mountian I couldn't get over. I started to look up companies that would possibly help me and I killed dozens of trees in the process. I found a place that says they will give it to me for free, so I am mailing in my application, and we will see.
Well, last night I went to pick up my current medication, Keppra. It's a fairly new drug, within the last 10 years or so, and there is no generic. It normally costs me about $300 every month. The lady asked if I wanted the name-brand or the generic. We went round and round about there not being a generic, when she handed me a list of medications the FDA approved generics for. Keppra was one of them. I said generic was fine, even though it wasn't that much less in price. Then I asked about my Topamax.
Guess what?! It's on that list too...........something that was going to cost me thousands of dollars to see if it made me seizure free is now only going to cost me $379.00 a month. THREE HUNDRED SEVENTY NINE DOLLARS..........................................I thought I was going to fall on the floor. Obviously that is still expensive, but that, to me, is still affordable. I am still going to apply for that program since I honestly can't get insurance.
Want to know what prayer and faith in God can do? Re-read this!
Oh, and God Bless the USA too........all of our current soldiers, military personnel and VFW's. My grandfather was a Vietnam Veteran and I miss him dearly. I am also the daughter, neice, cousin, and friend of active-duty and retired military, so THANK YOU FOR WHAT YOU DO!
For the first batch of medicine, it was going to cost $550.........for the full dose, it was going to be $4,400.00 every month. I am by no means a rich person, and I don't have insurance, so this seemed like a mountian I couldn't get over. I started to look up companies that would possibly help me and I killed dozens of trees in the process. I found a place that says they will give it to me for free, so I am mailing in my application, and we will see.
Well, last night I went to pick up my current medication, Keppra. It's a fairly new drug, within the last 10 years or so, and there is no generic. It normally costs me about $300 every month. The lady asked if I wanted the name-brand or the generic. We went round and round about there not being a generic, when she handed me a list of medications the FDA approved generics for. Keppra was one of them. I said generic was fine, even though it wasn't that much less in price. Then I asked about my Topamax.
Guess what?! It's on that list too...........something that was going to cost me thousands of dollars to see if it made me seizure free is now only going to cost me $379.00 a month. THREE HUNDRED SEVENTY NINE DOLLARS..........................................I thought I was going to fall on the floor. Obviously that is still expensive, but that, to me, is still affordable. I am still going to apply for that program since I honestly can't get insurance.
Want to know what prayer and faith in God can do? Re-read this!
Oh, and God Bless the USA too........all of our current soldiers, military personnel and VFW's. My grandfather was a Vietnam Veteran and I miss him dearly. I am also the daughter, neice, cousin, and friend of active-duty and retired military, so THANK YOU FOR WHAT YOU DO!
Friday, October 17, 2008
Mermaid and Minnie
When it comes time for Halloween, I always have high expectations for my kids costumes. This year, originally, they were going to be Cindy Lou Who and Baby Grinch......it's a long story! Anyway, when I failed to get the costumes made and we couldn't find any, I let them pick their own for the first year. It was a difficult decision for them both, at first they wanted to be cows.......yes, those annoying mooing things that live across the street. When I mentioned princesses, they were excited about that prospect also. Jaedyn decided she wanted to be the mouse, which in her language means Minnie Mouse, so I found her the sweetest Minnie Mouse costume from the Disney Store, complete with little yellow high heels. Then Rylee wanted to be Cinnerella........well, I'm sure you realize that's Cinderella, but all of the costumes in her size were gone, so we decided on Tinkerbelle...............at least we had. The costumes went to a friends house because we had ordered a Little Mermaid one for her daughter, so when she brought them over, Rylee was devestated that Halle got to be Ariel and she didn't. I explained that she was Tink and she had these cool light-up wings and sparkle shoes, but it was to no avail. She was NOT going to be Tinkerbelle, at least not willingly! We went to the Disney store yesterday and as long as they would let me return her Tink stuff, I told her she could pick something else........she picked the Little Mermaid. I kept telling her no, she couldn't copy Halle, so then she decided on Pluto. Yep, Pluto, if you remember, is Mickey and Minnie's dog..........
THANKFULLY, the Pluto costume didn't fit because it was VERY dorky! Finally, I broke down and she is also the Little Mermaid, and she'd better be a happy one! So now I have a Tink costume that I have to take back, BUT Emery gets to be someone from Cars, which is by far his all-time favorite movie!
(They wouldn't stay still long enough for me to get a picture, so I'll post them later!)
THANKFULLY, the Pluto costume didn't fit because it was VERY dorky! Finally, I broke down and she is also the Little Mermaid, and she'd better be a happy one! So now I have a Tink costume that I have to take back, BUT Emery gets to be someone from Cars, which is by far his all-time favorite movie!
(They wouldn't stay still long enough for me to get a picture, so I'll post them later!)
Thursday, October 16, 2008
My New Drugs
I went to the neurologist yesterday.........it was a new intern, not the one I saw in the past, but at least I could pronounce this guys' name and I didn't have to concentrate so hard on what he was saying! After a brief run-through of my past seizure history, we talked about more current things. After all was said and done, they decided they aren't exactly sure why I am on Phenobarbital and Keppra in the first place, and when it didn't work, why it wasn't changed, so they are changing it now. It will be a 9 week process to build up the Topamax, starting with a measly 25 mg at night. At week 8, as long as everything seems to be going okay, I can start to decrease my Keppra. I go back to see them in February, and if everything is going well on the Topamax, without my Keppra, they will start to take me off the Phenobarbital. In the meantime, I have to have a new EEG done and start eating things with potassium in them because this new medicine can cause kidney stones! OUCH! I've done that already, so they slowed the process down a little so maybe my chances will be lower. I also have to drink lots of liquid.......I do anyway............and really watch what I eat because this medicine causes rapid weight loss, and I don't need that! So I have to really monitor my diet! Other than that, they seemed to have high hopes for this, so we'll see!
Monday, October 13, 2008
The Strongest Muscle
The tongue is most often described as the strongest muscle in the body........I would also have to take the side of it being one of the most used muscles. I can say this because every time I have a seizure, I bite mine, and I had 3 seizures last week.......biting it every single time. It is all gross and swollen and there is no skin left on the left side of it. This has made it difficult to talk (I know people are counting their blessings!), drink, eat and even things people take for granted, like spitting out your toothpaste after you brush your teeth. It has been sore for days and I've dealt with it and tried not to complain, but yesterday I had had it! I was done, I was starving to death because I had been eating the bare minimum since it was so painful, but I made a huge batch of salsa and had chicken quesadillas with it. Probably not the smartest thing to eat, but I was SO hungry, I didn't care. I ate and ate and ate until I couldn't eat anymore..............then my tongue began to bleed, so I believe I learned my lesson. I washed my mouth out with Perioxyl and I think I am near starting over again. GGGGGRRRRRRRRRRRRRRRRR!!!!!!!! But at least my belly was full for the first time in days!
Friday, October 10, 2008
A Magical Apple
I'm beginning to think that in the saying, "An apple a day keeps the doctor away" they must be referring to a magical apple, because no matter how much fruit I eat, the time has still come.....I have a neurology appointment on Wednesday, the 15th, and I'm really wanting that magical apple because I don't want to go!
They will be taking me off of my current medications and replacing it with Topamax. It's not a new medication, but it's one of 2 AEDs (anti-epileptic drugs) that I haven't tried, so here we go! I've asked dozens of people that are currently on it and/or have previously been on it, what it's like, and no one has had any complaints, but nonetheless, I am still scared to death! I've been on Phenobarbital and Keppra for 8 years and even though it doesn't work 100%, it still works better than nothing, so it's still a comfort.........being taken off of it is something that is a HUGE worry to me! I am confident in my doctor's decision and although I have read terrible things about being weaned off my current meds, I'm trying not to be overly concerned! Pretty much, my body is so addicted to my medicine that coming off of it can be compared to a heroin addiction. Now, I know nothing about street drugs, but both of my medications are narcotics, so I'm sure they aren't too far off the mark when they compare it to that.
I also want to discuss the option of surgery. I'm not sure if I would be a canidate for it, but I would like to check into it in the event this new medicine doesn't do the trick! Please keep me in your prayers as I begin this VERY LONG process! And if anyone happens upon a magical apple that keeps the doctors away, let me know!
They will be taking me off of my current medications and replacing it with Topamax. It's not a new medication, but it's one of 2 AEDs (anti-epileptic drugs) that I haven't tried, so here we go! I've asked dozens of people that are currently on it and/or have previously been on it, what it's like, and no one has had any complaints, but nonetheless, I am still scared to death! I've been on Phenobarbital and Keppra for 8 years and even though it doesn't work 100%, it still works better than nothing, so it's still a comfort.........being taken off of it is something that is a HUGE worry to me! I am confident in my doctor's decision and although I have read terrible things about being weaned off my current meds, I'm trying not to be overly concerned! Pretty much, my body is so addicted to my medicine that coming off of it can be compared to a heroin addiction. Now, I know nothing about street drugs, but both of my medications are narcotics, so I'm sure they aren't too far off the mark when they compare it to that.
I also want to discuss the option of surgery. I'm not sure if I would be a canidate for it, but I would like to check into it in the event this new medicine doesn't do the trick! Please keep me in your prayers as I begin this VERY LONG process! And if anyone happens upon a magical apple that keeps the doctors away, let me know!
Monday, September 29, 2008
Toliet Paper Taboo
If you are a person that is shy or easily offended, I would not read this particular post. Normally something like this would be taboo to talk about, but some of the things my kids pull are funny and this is one............you decide!
I was in the bathroom getting ready to go see Nights In Rodanthe with a friend when Rylee said she needed to go potty. Normally I would help her, but she is very independent and declared she wanted to do it by herself. I was a little skeptical, but she needs to learn, so I told her to yell if she needed help. After a few minutes hadn't heard a flush, so I went to check. Coming around the corner, I heard the toliet flush and she was shutting the door. She told me she went potty and got toliet paper like Mommy. I told her good job and went back to my make-up. Getting toliet paper like Mommy is a good thing, right?
After a few minutes I thought that she had never told me about toliet paper before, it's just something she knows to do, so I called her into the bathroom. I asked her if she had toliet paper and she said yes, just like Mommy. I asked her where her toliet paper was and she said on her bottom. I told her I didn't have toliet paper on my bottom and she said, "Yes, you do" and opened the cabinet door and pulled out a pad. I laughed so hard and told her that wasn't toliet paper and it was for really big girls. When I pulled down her panties, sure enough, she had toliet paper EVERYWHERE!
And she's only 3!
I was in the bathroom getting ready to go see Nights In Rodanthe with a friend when Rylee said she needed to go potty. Normally I would help her, but she is very independent and declared she wanted to do it by herself. I was a little skeptical, but she needs to learn, so I told her to yell if she needed help. After a few minutes hadn't heard a flush, so I went to check. Coming around the corner, I heard the toliet flush and she was shutting the door. She told me she went potty and got toliet paper like Mommy. I told her good job and went back to my make-up. Getting toliet paper like Mommy is a good thing, right?
After a few minutes I thought that she had never told me about toliet paper before, it's just something she knows to do, so I called her into the bathroom. I asked her if she had toliet paper and she said yes, just like Mommy. I asked her where her toliet paper was and she said on her bottom. I told her I didn't have toliet paper on my bottom and she said, "Yes, you do" and opened the cabinet door and pulled out a pad. I laughed so hard and told her that wasn't toliet paper and it was for really big girls. When I pulled down her panties, sure enough, she had toliet paper EVERYWHERE!
And she's only 3!
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