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[history_grrrl]

Thanks so much for the warm welcome and the sound advice about work. I am a weird mix of workaholic and procrastinator (anyone else have this problem?), and it's possible that being forced to manage things in a more balanced way will, well, allow me to manage things in a more balanced way! You all are an inspiration.

Creepy procedure #1 was not so bad, though unpleasant. I forgot that I don't sedate easily, so the sedative didn't take effect until right after the procedure was over, but I wasn't in a position to tell them during the procedure that I was stone cold sober because I had a block in my mouth. Sigh. This happened once before during an eye operation; I panicked in the middle of it, and everyone was puzzled that I wasn't more out of it. I will remember this for creepy procedure #2, hopefully. One down, one to go.

Oh, and I am totally in awe of nurses. When I think of the tremendous store of knowledge and skills and talents they must draw on, I am truly amazed.

[msparticularity]

Hi, all! I'm at a conference and have just done two back-to-back days of 14 hours each--yowza! I've now had some room service pizza and am going to bed. The next couple of days should be easier, since I'm done with all of my obligatory stuff. Maybe I'll try some of that self-care stuff. :) I know I'll be next to catatonic by the time this is all done, but it's been a very good conference, so I'm feeling positive.

Welcome, History_grrrrl. Your situation with the driving made me think--wouldn't it be nice if we all lived close together, so we could pitch in and help care for one another? I mean, how great would it be to have a nearby support community who totally got what we all go through? We're always "nearby" for one another here, but there are some things--like driving--that really need more than virtual presence.

[gennimom]

Hi, MsP! Been wondering where you were! Yeah, I wish some of us were closer together for things like that. Although some of us are only an hour or so apart, it can still be difficult, what with schedules and such. *sigh*

History_grrrl, definitely tell them about your anesthesia issues before the cath! I've been doing that every time I get put under these days. I'm glad the only times they didn't believe me were just for back injections. I hope your next procedure goes better.

Of course, now I get the pleasant job of telling anesthesiologists that I can twitch during surgery when I'm out cold. Fun!

[biomancer]

Thanks so much for the warm welcome and the sound advice about work. I am a weird mix of workaholic and procrastinator (anyone else have this problem?), and it's possible that being forced to manage things in a more balanced way will, well, allow me to manage things in a more balanced way! You all are an inspiration.

Creepy procedure #1 was not so bad, though unpleasant. I forgot that I don't sedate easily, so the sedative didn't take effect until right after the procedure was over, but I wasn't in a position to tell them during the procedure that I was stone cold sober because I had a block in my mouth. Sigh. This happened once before during an eye operation; I panicked in the middle of it, and everyone was puzzled that I wasn't more out of it. I will remember this for creepy procedure #2, hopefully. One down, one to go.

Oh, and I am totally in awe of nurses. When I think of the tremendous store of knowledge and skills and talents they must draw on, I am truly amazed.

History_Grrrl, I know how unpleasant that can be - my brother and I also don't sedate easily.  He woke up in the middle of major knee surgery.  I was more fortunate - when I had my hand surgery, I was still talking with the surgical team as they got me settled in OR and started drawing the incision lines on my hand with marker... and the anaesthesiologist looked at me and said "Why are you coherent?"  Then he dosed me again and I woke up with a cast on my hand.  I warned the surgical crew for my last surgery and things went extremely smoothly, so hopefully your Procedure #2 will also go well.

And oh, yes, a good nurse is worth her weight in gold.  One who can slip a needle into your vein without you feeling it is worth twice her weight in platinum.

As for me... the new medication might finally be doing its job.  I was all set to call my gynie this week and tell her that the cysts just keep coming, but then this week there's been no pain to speak of in my abdomen (well, apart from the bellyache from eating to much Halloween candy one day).  I'm quite happy for the progress!  I'm just hoping that this really is a trend, and is not just because one of the cysts missed its cue to flare up and rupture.  The arthritis is starting to flare up again with all the weather changes, and I've dug out all of my knee-warmers such for when it gets a little nastier, but since the weather hasn't been too bleak yet I'm not having too much joint pain.  Lungs still seem to be happy with the Singulair.  All told, I can't complain much at the moment.

Ms_P, after two 14-hour days I think you're entitled to spend a day or so resting and pampering yourself!

Gennimom and Shambelle - if you're using the wrist braces a lot, you might want to find a couple old small socks, cut the toe end off and put a slit in the heel, and wear them as liners for the wrist braces (your thumb comes out the hole in the heel, and your fingers come out the toe end).  That way you can wash the socks and the wrist braces don't end up stinky. 

I hope everyone has time for rest and recuperation this weekend!

[ms_turtle]

Quick question before I head off to lecture...

Aside from various de-stress techniques, what do you think about massage therapy vs. acupuncture for muscle tightness in my chest. My heart's fine and this is definitively anxiety/panic/stress related.

Off to lecture, come with me and learn about epithelium in the nephron...

[msparticularity]

Hey, Ms_T - I have found massage very helpful for anxiety/stress over the years. Acupuncture has been terrific for pain and for my asthma, but I have not tried it for anxiety. The most important thing is to find a practitioner you like--you need to be able to look forward to sessions and see them as a refuge. If you are having low-level anxiety over going, or dislike having the person touch you, the whole thing will be counterproductive.

How's everyone else doing? I came home from my conference with a cold (or maybe a sinus infection), so I'm stumbling around feeling like my head is filled with cotton wool, coughing blowing my nose. Lovely.

[namazu]

I would just like to sing the praises of the light-box and melatonin combo.  I went from routinely going to sleep between 3 and 8 AM and sleeping through the better* part of the day to going to sleep between midnight and 3, and now I'm waking up before my alarm a lot of the time.  And my energy levels seem less exquisitely sensitive to the color of the sky on any given day.  This is progress.

* Well, maybe not the "better" part, but the "lighter" part, anyway!

[gennimom]

Biomancer, I've been giving the sock in the brace idea a try for the last few days before replying. Thank you for it! It works great! Now, if someone could just tell me how I took the right brace off in my sleep last night...

[biomancer]

Biomancer, I've been giving the sock in the brace idea a try for the last few days before replying. Thank you for it! It works great! Now, if someone could just tell me how I took the right brace off in my sleep last night...

I'm glad it's working for you... and I remember lots of mornings when I would wake up and wonder how my hand got out of the brace.

[msparticularity]

I am dropping by to whine. After last year, which featured a flare but no other illnesses, now I am catching everything! I began the year with what I am pretty sure was H1N1, and now I am on Day 7 of a cold that is wiping me out and making me cough a lot. I'm taking Mucinex, which is helping some, but I WANT IT GONE!

Have I mentioned I'm a really bad sick person?

[lenniel]

Hi all!

Ms_turtle, I think massage is great, and have found it really beneficial.  I second Ms_p's recommendation of finding someone who you feel comfortable with, as the level of touching can cause anxiety unless you feel really secure.  I have a good friend who is a reiki master and does sound healing, and though I am a bit of a cynic, I've had some work done by her an do believe that reiki is very helpful. 

Great to hear that the light box and melatonin are working, namazu!

Glad the first procedure went well, history_grrl, and I hope the second is going to be done soon?  I've always found that the waiting for a test or procedure freaks me out the most.

How are you, shambelle?  Still doing okay biomancer?  Are you feeling okay, Bibliothecula? Everyone else surviving the end of semester madness?

Are the muscle cramps still basically under control, gennimom?

I'm so sorry you have been catching everything, ms_p!  There have been a lot of bad colds around that linger forever - my other half had one that went on forever, it seems.  He's also working on quitting smoking and cutting back on caffeine, so it's amazing I didn't strangle him in his sleep, really, between the snorting, sneezing, coughing and complaining.  I can't imagine you are that bad as a patient.

I'll send you some hot soup, tea and a basket of cookies - get well soon, ms_p.  You are one of my favorite people on the fora and a great source of wisdom and cheer, so we need you healthy and rested.  Feel free to whine and stamp your feet as needed!

I also wish we were all a little closer as I'd be happy to help with rides, soup, trashy novels, and TLC.  The virtual presence is very comforting to me, though, and I look forward to hearing how everyone is doing.

Stay healthy, all!

[biomancer]

I made a big pot of chicken soup with wild rice yesterday - perhaps it's a good time to have another round of chicken soup for everyone on the thread.  Let me get a potful going on the stove and everyone can dip in as hunger strikes.

I'm in pretty good shape at the moment.  The arthritis is acting up a little more lately, but the asthma still seems to be under control, and the ovarian cysts seem to be on "pause" for the moment.  I'm enjoying it while I can.

[shambelle]

Hiya.   :)
Had my Remicade infusion at 6 weeks instead of the normal 8 on Wednesday. I need to keep doing this at 6 weeks. Its made a huge difference. Granted, I'm still having all kinds of issues with my guts attacking me, but it's to much less of an extent then when I was on infusions every 8 weeks. I'm having another infusion in 6 weeks, an appointment in January to evaluate if I need to keep doing this, and then we'll either try the longer protocol to see what happens, or just stick with the shorter one for a while. And then... I get another colonoscopy! Right now that's on for March, but it might be bumped up.

I turned 32 on Saturday and got sort of bummed out about where I am in life, health-wise. I never envisioned this for myself, and sometimes it's very hard to reconcile it all in my head. Then I got annoyed at myself for thinking about it and got my hair cut (well, trimmed) for the first time since January, since I'm still on 6-MP, which makes my hair fall out. I dyed it a little too, which isn't going to help with the whole hair loss part, but I'm still determined not to let this thing win...

Hope all is well!

[gennimom]

Well, except for constantly pulling or tweaking muscles, I'm doing pretty good. After last week, GD was able to talk me into getting a handicap placard for the car. Right now, I've got a tweak in the right knee that won't go away.

Somebody on the orphan disease fora found an article that was published by a researcher in England on Isaac's, or cramp fasciculation syndrome or whatever the latest label is. It depressed me. Apparently, there is a good chance cancer could develop with this. The most common kinds are lung (which I have less chance of because I don't smoke) and thymoma. Yay. Guess I need to print this out and show it to the doc. Doesn't help that I have painful knots showing up on the back of my neck now.

I'm glad this thread is here because I don't dare whine about this around my mom, and GD hears enough.

*sigh*

[msparticularity]

Thanks much for the love and the soup, Lenniel and Biomancer; it's just so nice to whine in good company, isn't it? And I'm glad both of you are having stuff at a lower ebb right now to give you a bit of a break.

Shambelle, this is sounding promising, and you are such a trooper about it all. I simply cannot imagine dealing with the things you have to live with all the time, given the invasive nature of treatments for your condition. Many years ago, when I had a ruptured follicle, I ended up having 19 pelvic exams from 19 different people in the space of about two weeks--and at the time I though I had experienced about all of the personal physical invasiveness anyone ought to have to handle. I think pausing and allowing yourself to realize that you put up with a lot more at 32 than most people have to deal with is fine; after all, you're not dwelling on it and taking it out on everyone around you--you're just giving yourself credit and sympathy.

GM, you really do seem to be having more than your share of stuff going on still. I keep hoping you'll find some treatment(s) that will give you some little pauses in between flares, like most of us seem to get. The totally random nature of your symptoms, combined with the lack of any real research and understanding, makes it so much more challenging!

Much love to everyone else also--I'm going to take my cough off to school in just a few so I can hack pathetically while teaching my research students tonight. :)