arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
I realized that it's been quite a while since I've given any kind of update on how I'm doing. I respond to posts here and there when I feel I can be helpful but otherwise I've been pretty quiet on here.
After 9 months of no treatment (except for a few weeks of Zithro and Mepron which I had trouble tolerating) I'm back on IV Primaxin. If you've been following my case, I was on IV Primaxin from the end of October 2005 to mid-January 2006 but had to stop it because of a huge crash involving low WBCs and major stomach problems.
My stomach problems were diagnosed as Gastroparesis and I'm now on treatment for that and it's helping me be able to eat more things but I still have problems with eating. My immune system has been fairly stable since stopping the Primaxin and I'm on supplements to keep my WBCs stable.
I've been on the Primaxin for just over 2 weeks and I spent the first week or so herxing and I'm still feeling kind of herxy but not as bad. I'm hoping that I'll be able to stay on the Primaxin for quite a while and not have any crashes like before.
I'm taking one class at school this semester (Linguistics) and enjoying it so far and I'm working a bit - teaching two childrens' theater classes on Tuesday afternoons and working a few hours a week in the office of the art center/gallery where the theater classes are.
I'm still definitely spending a lot of time in bed asleep or resting. I'm taking Zofran and Phenergan before every Primaxin infusion to keep the nausea at a minimum and it seems to be helping a lot in that area but the Phenergan really knocks me out so I end up sleeping quite a bit during the day.
I have a trip to Oregon to visit my sister coming up - I leave on Wednesday. That will be very nice and hopefully getting all my IV supplies while I'm out there will go smoothly (my infusion company is a national company so they're contacting the branch out there) - this is the first time I've taken a major trip while on IVs so I'll see how it goes. I'm just looking forward to seeing my sister and having a bit of a vacation!
So, that's what's going on with me. Just thought some of you might like to know!
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Tinny! So nice to see you back on the board after a hiatus (or maybe it just seemed like a hiatus - although I know you've been VERY busy with your own stuff).
I have yet to make it to one of Dr. Jones' hearings because they're just not scheduled around my unavoidable committments. It's always either a doctor's appointment (my LLMD is only in the office I see him in on Thursdays so of course the hearings are all on Thursdays), a trip or vacation (two of the hearings landed during my vacations in Maine in June and August), or work as happened this week. My boss was away on her own vacation (in Bermuda) so I was in charge of the art gallery and couldn't get away for the day.
BUT, I am going to make it to the next hearing (I know the dates have been changed to November 16th and now I just have to note the change in my planner). I refuse to schedule a doctor's appointment for that day (even though that will probably be the week I'm due for an appointment - I'll juggle it) and I don't usually work on Thursdays so I should be good to go! And my aunt and uncle live about 20 miles north of Hartford (in Enfield) so I'll stay over with them at least the night before the trial instead of getting a hotel room or making it a VERY long day (I'm really not a morning person).
So you better be at the next one, too, so I can see you! When you posted about going out for Margaritas after the hearing this week, I thought for a few minutes about trying to work things out so I COULD make the hearing but then I came to my senses and realized that even if I COULD get someone to cover work for me, it wouldn't be in my best interest right now to spend that time travelling and exhausting myself even more - working all week takes enough out of me without adding more to the schedule.
Okay, enough ramblings. So good to hear from you and I hope we get to talk face to face sometime soon!
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Thanks for the update! I was wondering where you have been lately. Am very glad you are getting some much needed Bb butt kicking abx! even though I know it comes with a price tag to your system.
I hope you have a great get away to oregon! trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
Annie, have a safe trip to your sisters and ENJOY each day to your fullest. Missed you. Bettyg
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