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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Wed Nov 26th, 2008 17:58 |
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I don't get the itching palms, but extra light gives me crawling spiders across my scalp and around my body. You try living with a germaphobe (Sarah, middle daughter on the MP) while needing to scratch! 
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Markt9452
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Posted: Wed Nov 26th, 2008 18:19 |
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I thought that meant you are about to get paid....
Better get a lottery ticket...(and put it in a sealed plastic bag in case it has any germs)
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Th1 Lyme 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Wed Nov 26th, 2008 19:45 |
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I am looking forward to the day when this kid can live like a normal person instead of a mini-Howie Mandel. Everything has germs when the brain goes haywire, eh? Woof! She works hard to keep it in check, as in understand it's a Th1 issue and not real, but our back up plan is my threat that if she washes her hands too obsessively or freaks out too intensely.... I will body tackle her like an NFL linebacker.
The idea of that much physical contact...... oooooohhhhh......
The things a loving mother has to threaten, eh? Wow. 
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Thu Nov 27th, 2008 01:20 |
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If only I could wash my hands...it's the whole nail splitting problem.
Well, Juanita, you do whatever works. I had a friend once who raised two very nice children by threatening bodily harm (weird stuff: head in toilet) while using a silly and demented witch's voice and making witch's fingers (sort of like the whole Wizard of OZ thing). And her kids thought she was a laugh riot and did what they were told. I'm sure you are fun for Sarah...in a weird sort of way.
Oh, and I think you are right about the light. The itching palm thing got worse after I logged a lot of time on the computer working on a loose ends project.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
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Posted: Thu Nov 27th, 2008 17:27 |
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I've been an odd mother and that's for sure. Some times I get tired of hearing the wild stories of things I've done to catch their attention on unwanted behaviours. I keep repeating... I have Th1, guys. Give me a break. But they think I'm hilarious so I've actually been really blessed there.
Their new name for me now is Walter, after the character in the tv show Fringe.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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expate
Member
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Posted: Thu Nov 27th, 2008 17:44 |
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My alternate/crazy mom name is Sinclair. Go figure.
But really, I came here to complain. It's Thanksgiving. I've got a kid each in South Africa, Maine, and New Orleans, my husband is in New Zealand, and I, I am in Norman, freakin' Oklahoma. Alone. OK, I'm headed to a friend's house, but I want to be with my family.
AND, I'm tired of living in a dim world. There are things I want to do that require seeing better than I can. Or maybe I'm just tired of constantly having something on my face. I just want to rip my NoIRs off.
Arrrrrrrg! (First typed Arrrrrrrf! which made me smile, which made me feel a tiny bit better.)
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Juanita
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Posted: Thu Nov 27th, 2008 19:56 |
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Sinclair. That's an interesting and strong name. I imagine that fits you well, Odette.
I'm sorry that your family is split up over the globe on Thanksgiving. That sounds difficult and lonely. I'm glad that you are going to a friend's place, even though you'll have to wear your NoIRs. The isolation of being ill and that also can come from doing the treatment well... that's sometimes brutal. Sometimes I'm okay with it because I know it's not forever and sometimes I feel it crushing my soul. So you have my compassion.
And I haven't been around for a while, but your posts have stood out in my mind. That sadness, heaviness, irritability and depression have been something you've been dealing with as IPs. That's challenging. I was there too, it's why I haven't been posting as the darkness claimed me. So I understand this.
Write a post-it note and stick it on the bathroom mirror or on the fridge... It Won't Last. It lifts. Some day, you will be free of NoIRs, free of darkness, free of IPs and full of wellness. We all will. It just takes time. In the mean time, it's like Freddy says... we're all in this together. *warm thanksgiving hugs*
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Joyful
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| Joined: | Sat Jun 9th, 2007 |
| Location: | On Vacation |
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Posted: Thu Nov 27th, 2008 22:47 |
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Odette, Juanita,
Whenever someone asks how I am (and I tell the truth) that they sometimes seem to feel more overwhelmed than I do. That's when I pull out my favorite endurance quote:
It came... to pass!
It is sort of a sideways use of a common phrase because I truly believe and fully expect that my current momentary set of troubles are just "passing thru" and better days will come again. If you have any doubts about that... it's the bugs talking. 
This is my second year of 'doing nothing' on our traditional American day for thanks-giving. (No one lives near and travel is *not* worth it yet.) It helps that I woke up with a tiny bit beyond tolerable IP/herx (20mg Benicar sublingual helped getting out of bed by 2pm today), so I'm kind of 'thank-ful' to be resting instead of trying to deal with travel/people/light/stress, if you know what I mean.
I think I have personally filed the 'missing family' feelings in a back closet in hopes that I will some day feel well enough to unpack them while on a trip to visit them again.
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expate
Member
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Posted: Thu Nov 27th, 2008 23:49 |
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Juanita, Joyful, thank you both. I'm home from T-day meal at friends (a mottly gathering of the family-less in town) and... I survived it. I enjoyed parts -- bountiful and good food which I was able to feast on and avoid D (though not carbs , but hey, those bacteria have to have their thanksgiving feast too).
Part of my "dread" was knowing I'd have to talk about why I'm dressed, bespeckled, and cloaked the way I am. Result? I had some good talks and some kind of confrontational ones. But even the latter left me feeling it was their problem, not mine. And... compliments on my "islamicoutfitters.com" threads. There was laughter.
Anyhow, my kids texted me and told me their friends' T-dinners didn't compare to mine and so I felt missed and valued. Sick, eh?
Juanita, "Sinclair" is a gas station here that has a dinosaur logo. In jr high, my daughter and her friends were in this little group that had male names (my D was Charles, for Caroline; it started because her best friend went by her last name, Vincent, and a couple of others.) I chauffuesed them everywhere and was finally admitted with the name Sinclair because I was a dinosaur.
Funny you mention the heaviness, sadness, etc. of my posts as being IP. I can't take the internal search right now to deal with that but I want to say, yes, true... yet since starting the MP, I'm off my anti-depressant for over 4 months now and doing great. It's like the IP stuff is grumpy and irritable and pissed off, but it's not depression as I've known it. IDK.
And Joyful, I love "It came... to pass!" It shows the importance of punctuation (go style guide!) in writing and humor. I'm sorry you haven't been able to get out these last Thanksgivings. You will get those family trips back.
So, slow and steady wins the race AND yes, Freddie's, "We are in this together."
Happy Thanksgiving,
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Caitiegirl
Member
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Posted: Fri Nov 28th, 2008 01:26 |
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Odette/Sinclaire,
We went to OK for the first time this summer and thought it was so cool that you guys still have the Sinclaire stations. The big dinosaur was a welcome wash of nostalgia for me and hubby and very memorable for the kids too. We loved Oklahoma. We ate in a Western Sizzlin which are very hard to find here too. I used to work in one during college so again it felt very much like home. Oklahoma was one of our top 5 states to visit on our trip.
Isn't the reason we go through all those labor pains and years of work so we won't have to spend our holidays alone? Holidays are hard sometimes, even when everything goes well. Call it all IP. It's a built-in excuse for almost anything.
Try to think of the good side. You won't have to eat creative turkey leftovers for days.
Mindy
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Caitie(19) lyme,seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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Deb Grabetz
Moderator
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Posted: Fri Nov 28th, 2008 10:47 |
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Joyful,
I like "It came to pass"....I often use "It is...what it Is!" as this is exactly how I feel. I have found in the last two years that there wasn't a whole lot I could do to change my situation except for find the best treatment that I thought was out there to get me well, which I (we) have done and get 'er done. (I just love that Larry the Cable guy). So "It is...what it Is!" has worked so often for me...on my good days and on my bad days. It helped me accept that I wasn't going to get well any faster than my sick body agreed to and it has often been not so agreeable!
Odette, I didn't read your Thanksgiving post until this morning...wow, without IP that would have been a challenging day for anyone...to have your whole family scattered. My first thought though was that you've raised independent children, which is a great thing, maybe just not so great on Holidays...I hope it was a good day for you!!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Sat Nov 29th, 2008 06:02 |
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Ungrumping here.
I discoverd that the itchy hands was from a yarn I was using. I hated the feel of it and threw it away and then scrubbed my hands hard a couple of times and the itch is gone (worsted 100% acryllic...it had to be whatever was done to the yarn in the finishing process).
I'm ungrumping because my immune system is waking up and along with it chemical sensitivity; however, the wakening immune system is a very good thing.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Michele MBK
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| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
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Posted: Sat Nov 29th, 2008 16:52 |
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Nice new term, Claire. "Un-grumping." In MP-land it can say so much!!!!
Michele
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Lyme / RA 125D30 25D16 Advil / Vicodin or Celebrex low lux home NoIRS cover up Ph1May08 Ph2Sept08 May 09D25:6
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expate
Member
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Posted: Sat Nov 29th, 2008 20:37 |
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Life's a little better today. Decided I needed to do a little self-care stuff. So, I made some bread, had a nice dinner of steak and Brussels sprouts, a bit (too much) of red wine and put on an uplifting movie ("Ballet Shoes").
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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magsmom
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| Joined: | Thu Aug 7th, 2008 |
| Location: | Oklahoma USA |
| Posts: | 45 |
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Posted: Sat Nov 29th, 2008 21:23 |
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Odette,
I like your "self care prescription". A good steak & compliments always improves my disposition, especially if I can grill it myself or if it comes from Cattlemans Steak House.!! Magsmom. oops this is suppose to be grumpy - - DARNED wish that steak place made deliveries!
Last edited on Sat Nov 29th, 2008 22:42 by magsmom
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FM/Fatigue/Lyme/TMJ/Trigeminal Neur/Migraine/Degen Disc Dis/Sciatica/OsteoArth/Myalgias 125D52.2 Ph1Aug08 Benicar NoIRs low light home exp rt work aprx 30min 25D32.4
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
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Posted: Wed Dec 3rd, 2008 15:44 |
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I'm grumpy because my sinuses are acting up. Loads of mucous and pressure. I have turned into a Snot Farm but who wants the crop????
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Caitiegirl
Member
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Posted: Wed Dec 3rd, 2008 17:27 |
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What a pleasant picture Juanita. Can I grump about something totally nonMP? I was deep cleaning my bathroom yesterday and opened up the little doors under our big tub so I could vacuum up any dead lady bugs (a big problem here for some reason). So under my tub, I saw a TAIL!! Not a short cute furry tail but a long black scaley tail. Yuk! I HATE SNAKES!
Now on the good side it was, most likely a black snake which is busy eating all the annoying little mice which get under my house this time of year. But it's still a snake. I think I'm going to duct tape the doors shut under the tub. Maybe I can add some glitter and make it look Christmasey. I swear I told my husband I never wanted to live in the woods. First Lyme Now this.
I'm done now. Thanks for listening! Tomorrow will be a better day!
Mindy
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Caitie(19) lyme,seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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magsmom
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Posted: Wed Dec 3rd, 2008 17:27 |
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| I can sure relate - & just how does the body make that stuff anyway? Has Dr Oz or anyone else a scientific answere to that? - I have always thought that if I could find a usefulness & manufacture it I could get rich - perhaps it could be the next "special glue" it could be called "stick on" - - - grump grump - magsmom
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FM/Fatigue/Lyme/TMJ/Trigeminal Neur/Migraine/Degen Disc Dis/Sciatica/OsteoArth/Myalgias 125D52.2 Ph1Aug08 Benicar NoIRs low light home exp rt work aprx 30min 25D32.4
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Juanita
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Posted: Wed Dec 3rd, 2008 17:37 |
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Special glue. I'd use my own, but would I buy someone else's? *gulp of horror*
Our last house had been infested with mice before we bought it and sealed up all the entrances. I used to think mice were cute. Not any more. I love this new house in town where mice don't live. Haven't seen but one and that one was dead out in the fields when we spooked a cat away from it's breakfast.
Ticks, mice, snakes, spiders.... people in North Carolina are brave.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Adrianne
Member
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Posted: Wed Dec 3rd, 2008 18:48 |
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No, Juanita, not that brave. Daugter, who lives 5 mins. down the road from us, recently related this story to us. She had put up a wreath on her front door. The next day, she opened the door, which swings inward and was face to face with a long black snake which had wrapped itself around the wreath, in and out, in perfect decorative fashion. He was contentedly sunning himself. Since then I've been fine with the back door........
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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