Saturday, November 8, 2008

Loose Ends

A few quick things I want to say then I am off to hunt up some cheap crap that I don't need at stores that know I am there to spend my pennies and welcome me with open arms, ie Hobby Lobby. That place sucks the money right out of my pockets, even if I just drive by I swear I lose a few dollars.

*Please comment away. I love all and any comments so don't ever feel the need to not comment because you think you comment too much. Your comments amuse me so much I would really miss hearing anything you have to say. I yukked it up over Diane's comment about only finding lesbians at hardware stores and that I need to look in the frozen food aisle for boyfriends and think when the time is right I may have to invest in some eau du meatloaf to try out her theory. In fact, I enjoy most of the comments so much I share them with my family and lay in bed at night still laughing at some of the things you guys (Midwesterner, we say "guys" for everything) come up with. So please do not hesitate to bury me under comments. One of the highlights of my day is to check my email and see what you have to say. Hmmm, meant that as a compliment but with a life full of low lights not sure how flattering that was, but you get my point.

*I have been meaning to thank you all for the awards that you have bestowed on me. I even have several drafts thanking everyone for the awards and appreciation that you gave me. The best part about it is that I started this website to say my piece (and get out?) and I never dilute myself on here, so it surprises me that people would enjoy that. I am totally myself (for better or for worse) so I am very pleased that people like me ("you like me! you really like me!"). I honestly thought I would get more negativity for my point of view, so to be appreciated and even enjoyed was a very pleasant surprise. I am glad that others, who may not always agree with me, enjoy what I have to say. In a strange way it is like an acceptance of who I am and that has done me a world of good.

*I am in total agony with my stupid TN. I upped my dose of Neurotin, which has been a god-send and I praise the gods of Neurotin throughout the day. When I talked to my neurologist, she said that I could go up to 3 times the dose I was taking. But I am slowly working my way up as I need it. I am loving the sleepy release that it gives me and even wake up at night when it wears off, so I keep a glass of water and some pills on my nightstand. It has made me cross and irritable but I am trying to not punish others because of my pain. Although Princess has taken to calling me "Mr. Krabbs" when I am short-tempered and cross. And because I am often too cross to write, my blogs may slow down a bit until I get this under control. I am having a whole host of problems and if I didn't know better (??) I would think I am having a relapse, which brings me to my next loose end.

*My neurologist said that a break through attack is rare on Tysabri; but if there is a 70% reduction in relapses wouldn't that leave 30% of the attacks? I think I have said that before, but I can't remember if anyone had any answers. It only makes sense to me. 70% is not 100%, so therefore I should expect an attack from time to time, right? It has been over 1.5 years of attack-free bliss, so it only makes sense to me that I should have an attack from time to time. When I called about pain management, the nurse said that my neuro wanted to see me in the clinic. I let loose a hearty, "DAMN!" then apologized. The nurse, nonplussed, said she hears a lot worse and got a good laugh out of my reluctance to see my neuro so soon again. Do the IV steroids help TN? I don't know but I am willing to do them if they will help, and the only way I would ever consent to doing them again is in extreme circumstances. And this is an extreme circumstance. My little sister is against my using steroids again because the last time I went crazy and she is worried about how I will take it now that my life is worse. She said I will have to have someone with me the whole time and even for sometime after, until I am past a certain time period. She says I lost the luxury of being alone if doing steroids and need an around-the-clock babysitter if I do them. She reminded me of the horrors of the loony bin to make me think this through, but I am willing to do anything if it will give me some relief.

I think that about sums it up. I'm riding the Neurotin pain-free high and want to terrorize the natives before it wears off.


Heather said...

I too find it a highlight to get comments on my blog. I spend more time reading and commenting on other peoples blogs than I do writing on my own. It's addicting.

Your blog has to be one of my favorites to read. Your sense of humor cracks me up!

Bubbie said...

I love to go spend money at hobby stores. I've never been to a hobby Lobby. It could prove dangerous. I have more projects at various stages than , well...I can't remember half of them. I usually come across one or two on the odd occasion when I clean up.
Anyway... I have TN pain from time to time. I take Lyrica regularly. My dose of neuronton was mega, too many pills. I still have found nothing that works for it other than knocking myself out with some possibly dangerous combo.

Jen said...

All right, Blindbeard. I have way too many comments for eveything! I was just telling Lisa E not to feel bad about a comment she wrote that might have hurt someone. I think I have insulted more than a handful of people (probably yourself included), but I always say what I'm thinking at the time, and I do it with good intentions and never in a hurtful manner. I just find it hard to edit myself for content!
So I'm glad you don't care, but I figured with what you say here, you probably have a strong stomach for anything..

About the Tysabri: my neuro, whom I have complete faith in (I don't trust too many doctors besides him and my GYN. I even trust my therapist more than my current shrink), was gonna put me on Tysabri a couple of years ago when my MS was raging and I wasn't regularly on Betaseron yet. He told me at the time that Tysabri is about 70-75% effective, or 2X that of any of the injectables. The steroids (my first time ) kinda put the kibosh on things and the Betaseron worked, in my case. I also went to a seminar about Tysabri last year and the neuro who gave it also takes it for his MS. And he mentioned relapses and what the protocol is for them (going off Tysabri during steroid usage because it's too immune-suppressing.) Third: my friend who is on Tysabri just had a relapse similar to Linda D's with an episode of speech scanning.

I don't have a ton of experience with TN (when I get it, it's pretty mild and dies down in an hour or so.) I'm glad the Neurontin is helping a bit. That stuff makes me zonked.

About steroid usage: I think Linda D has the best info about taking a benzodiazepine (you're on Xanax already, right?)during the usage to keep your sanity. I took and take Klonopin and it's a life saver. I don't know why doctors downplay the possible insanity that can result from steroids.

Okay-- I'm done yammering. I always have too much to write, but my intentions are good. What's a worse insult? When someone doesn't bother to care.

Peace out--



Ah, HELLO?!? I sadly now know you only scan my blog...LOL I JUST experienced a relapse while on Tysabri (or at least that was my neuro's opinion of my symptom development) and just had a 3 day of IV Soly. I was so hoping it was PML to finally kill me, but the steroids DID seem to help, so... :-)

Benzo's are you friend, dearest...and having an anti-pyschotic med on hand "just in case" while on the roids might also be a good idea (and there are many more besides Zyprexa available!). But you are probably going to need a much higher dose of the benzo's than you regularly take. Just say "no" to the loonie bin this time around if you DO need steroids...because it sounds like your TN pain "could" drive you right down the crazy highway anyway at this point.

I'm just sayin'... :-)

Linda D. in Seattle


TN sucks!!! The 600mg x 3/day of Neurontin keeps mine at bay thankfully.

And Hobby Lobby? I didn't know that Nebraska had any of those. Hobby Lobby started in Oklahoma City, my old stomping ground. Very dangerous store that one.