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JanEE
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Posted: Fri Oct 9th, 2009 03:27 |
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Lee, you're right it isn't objectionable, just different, although when it's happening I can't concentrate on anything else. I've had small knee jerks, but never anything that could be considered embarassing, unless I'm missing your point somehow.
Now, thanks to you Claire, I've learned even more about my body. Seems we might all be close to medical degrees by the time we're through witht the protocol---just kidding, of course, but it sure has been a learning journey.
I suppose a tic wouldn't be out of the question. It did feel something like that, but not like something poking from the inside out.
I also had some of that electrical stimulation for my neck and shoulders just a few years before beginning the MP, and strangely it was about the time that was finished that I began to have the horrible leg pain that stayed with me for months. I've often wondered if that is what triggered it.
It would sure be interesting to see some kind of a timeline description of all the conditions and illnesses we've had in our lives, what the cause was for each one, and how they really all related to one another.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Deb Grabetz
Support Team
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Posted: Fri Oct 9th, 2009 12:53 |
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JanEE wrote:
Now, thanks to you Claire, I've learned even more about my body. Seems we might all be close to medical degrees by the time we're through witht the protocol---just kidding, of course, but it sure has been a learning journey.
I suppose a tic wouldn't be out of the question. It did feel something like that, but not like something poking from the inside out.
I also had some of that electrical stimulation for my neck and shoulders just a few years before beginning the MP, and strangely it was about the time that was finished that I began to have the horrible leg pain that stayed with me for months. I've often wondered if that is what triggered it.
It would sure be interesting to see some kind of a timeline description of all the conditions and illnesses we've had in our lives, what the cause was for each one, and how they really all related to one another.
Jan
Jan--- I think you are right about medical degrees by the time we finish up with the MP...this has crossed my mind often. I'm pretty used to thinking this way now after 2.5 years on the MP!
I'm glad that this discussion has come up because my IP as of late has been all nerve related and it is annoying, truly. My hands and feet are suffering from almost constant parathesia, my back muscles are aching, I'm getting those jerking stabbling pains in my legs, hips, shoulders, I'm even noticing nausea with it all. My "guess" has been as I sort through the many theories, is that I have some IP going on with the nerve areas in my spine. This is exciting though even though daunting, as there is healing going on, history tells us this.
I hurt so badly last night, that I was actually dreaming about the pain until I finally woke up and realized it was PAIN! My sleep seems to be interrupted lately and I'm thinking now after waking up this way, that it is due to the pain. I have held off taking any kind of pain meds, maybe need to reconsider?? Any suggestions??  I do occasionally take Papaya for my nausea, it is a supplement but I don't feel I take enough to alter the MP...
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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 |
| Posts: | 1417 |
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Posted: Sun Nov 8th, 2009 14:03 |
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Since Friday night, when I incorporated this particular IP into my dreams (and was surprised to learn I was having when I woke up), I have been having a spasm in the muscles right at my bikini line.
It feels like a miniature dance move... the Jerk or the Shimmy.
 "I feel like dancing, yeah."
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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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Deb Grabetz
Support Team
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Posted: Sun Nov 8th, 2009 15:34 |
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Wow Claire, now I like that kind of IP...maybe you'll be a belly dancer at the end of your journey
Funny isn't it how we incorporate our external surroundings into our dreams...I'm just glad as an adult I no longer pee my britches when I'm sleeping and dream I have to pee!!! ..lol
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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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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Sun Nov 8th, 2009 21:12 |
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Sarah spent the first year and a half with a flutter in the soles of her feet. But they can also show up absolutely anywhere on her body. It's like her own version of Where's Waldo? I sometimes get them at the edges of my eyes.
It's small, but after a while, it drives you bonkers, eh?
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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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Posted: Mon Nov 9th, 2009 00:05 |
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Speaking of incorporating stuff into our dreams... years ago my ex-Y and I were headed home very late after a wedding with an hour drive ahead of us. Both of us were trying to stay awake for the other as we switched the role of driving back and forth. During one of my short shifts behind the wheel, I turned to my ex and said, "Did you just see a bed run across the road?" We knew at that point that I was in no condition to drive.
I swear to goodness that I saw the road and I was totally in control of the car, but that bed had no business darting across the road in front of me!
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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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Deb Grabetz
Support Team
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Posted: Mon Nov 9th, 2009 14:09 |
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Claire, You always think of something incredibly funny...that only you would come up with!! A bed?...darting across the road?...Can't wait to hear that you've experienced that IP again!!! lol...
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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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Lee
Member
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Posted: Mon Nov 9th, 2009 14:46 |
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Lately my IP has been rare so I am worried it is time to switch abx even though I have lately! But as soon as I try and go shopping, it reminds me I am killing something!! Maybe it is the lights compounded with the fear of germs, even with the buggy wipes, I usually have to leave before I am finished?! Living alone I have to shop at least once a week. NOIRS in place, no matter, I still get that hot, sticky, hard to breathe, need to get out of here feeling!! Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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eClaire
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Posted: Mon Nov 9th, 2009 18:38 |
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Lee, I have neuro problems if my NoIRs are too light or too dark. I don't wear NoIRs at home any longer because the 40% NoIRs are too dark (unless maybe I replaced all my low wattage bulbs for high wattage bulbs and I am not interested in doing that and wearing NoIRs again at home, as it is nice for my housemates to be able to see my eyes). I find that when I am in stores I can usually handle the lights and when I can't the 40% NoIRs are too dark, making the shopping experience uncomfortable no matter what I do.
Well, I have a pair of glasses that are tinted amber (far less than 40%) and after a year of not needing them indoors, I am needing them to watch TV at my Mom's, which has corresponded with my need to have some protection in the stores again. They are working perfectly at my mother's, and so I am going to try them in the stores too.
I have to get new glasses and I will get those slightly tinted as well because the tint can be lifted if I no longer need them. ( I wonder if I can get them polarized or UV coating and have a slight amber tint as well... probably not. I'll have to weigh out the pros and cons of the various options.)
At any rate, I wonder if you are at the point where your NoIRs are too much when you are at the stores.
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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Deb Grabetz
Support Team
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Posted: Mon Nov 9th, 2009 20:36 |
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Claire,
Very good point about the NoIR's. It seems the same with me--when they start aggravating me it is usually time to go to a higher percentage of transmission. It took me some time to get used to this and yet I find the light is still a big issue for me. Are you able to use your computer without your NoIR's??
My prescription glasses have a UV coating, which is definitely a help. Just wearing my glasses on most days indoors is comfortable. Stores are surely still a problem for me and most of the time I'm wearing my NoIR's, which really doesn't bother me anymore. My eyes are truly one of my best features though and my hubby will often tell me how much he misses seeing them
I've noticed for years how sensitive my eyes were to finding the right sunglass as many bothered me terribly. Now I understand from all of the information from the MP, what was causing this. Claire, after reading your post though, I may try some normal sunglasses on just to see how I fare with them on, haven't tried that since I began with the NoIR's. They are the best thing though since sliced bread!!!!
When I'm able to shop comfortably I will know I'm in the home stretch
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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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Cynthia Schnitz
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| Joined: | Wed Apr 8th, 2009 |
| Location: | Arizona USA |
| Posts: | 65 |
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Posted: Mon Nov 9th, 2009 22:16 |
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| I checked with the place I get my glasses prescription filled, Costco Optical, and they said that they have been supplying UV blocking glasses for years without any other option, just the way things are done these days. You might want to check with your sources to see if what is available is always UV blocking. I have not worn any eye protection except my prescription glasses for several months now without a problem, but had the situation of spending an entire day in a 30% transmission greenhouse as a helper at an Orchid Show, and half way thru the show, I had a minor word retrieval problem, and then no problem after that. I found it interesting that the remnants of IP were still there at such a low level. Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10ng/ml 10/10, (preMP 125D/25D=47/43) | My progress
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Lee
Member
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Posted: Tue Nov 10th, 2009 00:47 |
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| Thank you! My NOIRS are old and worn and I do have new indoor computer tinted glasses I can probably use for shopping ... Flickering store lights make me grab for the NOIRS even though I don't usually need them much now!! I am anxious about being alone shopping and driving and wonder if that can kick in IP? I am on close to max doses of abx so it makes sense to me ... Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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eClaire
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| Location: | Virginia USA |
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Posted: Tue Nov 10th, 2009 01:40 |
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Yes, Deb, I can use my computer on its darkest setting and sometimes up two to four notches. When I am being bothered, I can put on the tinted glasses, as they are trifocals. I hate them (ugly... I usually have 1 pair with bi-focals and 1 pair for computer because I cannot handle the no line without having neuro complaints... hope the MP cures that), but they are only back up for the MP. If I wear my NoIRs with the computer and turn up the backlight to see, things are uncomfortably orange now... when I never even noticed the color before.
I've got an eye appointment tomorrow Cynthia and so I'll check out all the options with my local optical store. They're pretty great at being able to offer or find a way to offer whatever is out there.
Claire
Oh... weird thing... Since being on the MP and using the NoIRs, I got some kitchen towels from my mother. During the period where I have been wearing NoIRs, I noticed a difference in color perception. However, right now, without the NoIRs, I cannot tell that these towels are green in a somewhat darkened house; I thought they were gray and could only see that they were green when I took them into the brighter sun room. However, my housemates can see the green in the same light where they look gray to me. I wonder if this will change on the MP or if I've always had trouble picking up some greens.
Last edited on Tue Nov 10th, 2009 01:44 by eClaire
____________________
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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Alayne
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| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
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Posted: Tue Nov 10th, 2009 08:39 |
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Claire, is it possible that your roomies saw the towels under a brighter light (w/o you there) and because they "know" the towels are green, they can also perceive them as green in dimmer lighting situations? Just a thought.
I've mistaken gray for green since starting the MP myself. I recall a day earlier this year when my guy walked outside in front of me - we were attending a small party. I'd advised him on matching his clothing (gray pants) to a nice shirt, etc. Lo and behold, after his wearing those pants a few times over the MP years, I lowered my NoIRs outside and saw they were green pants. Then I noticed that some shoes I'd bought him were actually greenish - NOT gray. Fortunately, the shirt matched anyway.
Now, I check my clothing against natural light with raised glasses just to be careful. What looks super in my 40%'s can really look awful to the naked eye. Sometimes I even prefer wearing them when I look in the mirror because they add a little color to my skin tone. ... and hide the lines.
Am I supposed to be having some unexpected IP to post here? Um, my buttocks hurt royally today after walking strenuously up a hill. And my legs tingle, vibrate and quiver after I take my walks. IP?
Cheers,
Alayne
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CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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Lee
Member
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Posted: Tue Nov 10th, 2009 16:24 |
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Very interesting! Hubby and I are always disagreeing about green/grey and blue/black color .... Could be a "man-thing".
I do remember the nurses warning us a few years ago about driving and using the very dark NOIRS too. I believe it was stop-light color recognition?!
Lee
____________________
2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Knochen
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| Joined: | Thu Feb 23rd, 2006 |
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Posted: Tue Nov 10th, 2009 18:09 |
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And my legs tingle, vibrate and quiver after I take my walks. IP?
Sounds like what I had a lot. Felt like I had done a heavy workout and had really "burned" the muscles. I got this sometimes without having done anything, just sitting there, or even when I woke up.
I sense a business opportunity for the time when everyone is on the MP and wearing noirs. "Noirsafe" clothing lines, so you know stuff matches!
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Freddie Ash
Member
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Posted: Tue Nov 10th, 2009 20:57 |
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HI ALL
This is Fred in WV. On the eye IPs, a few months ago I had one with my eyes. I help with the laundry. We use some blue/green frabric sofner. Well when I was putting my underware shorts in the dresser, I though they had a stain on the edge the color of the sofner. I thought we had got the sofner on the shorts my mistake. I even picked the shorts up and took my eye glasses off (not the NoIRs) to take a closer look but the stain went away. So I knew my eyes were playing tricks/IPs on me. I had this to happen 2 different times. So I just pasted it off as an IP with my eye. I had the cataract at that time.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Tue Nov 10th, 2009 21:37 |
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The fall colors look more vibrant with NoIRs! I'll miss that. (That's my grump... one that I will willingly give up to be able to go without sunglasses and live a more normal life again.)
____________________
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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Dody
Support Team
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Posted: Tue Dec 1st, 2009 02:51 |
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I've had a recurring vision IP that is weird but truly beautiful: driving at night, sometimes I see a deep royal-blue cloud, a lttle bigger than a vehicle, between me and the next vehicle a ways off ahead of me on the highway. Someimes it's a little more purply-blue, sometimes more indigo, but always a deep saturated opaque blue. It changes shape a bit, lasts a few miles, and then I don't see it again for weeks or months.
Lee, I have the limb-jerk thing fairly often. It often follows an evening of especially restless legs, and once it starts it usually follows me to bed and is not so much embarassing as disturbing to my efforts to fall asleep. Once it starts, about the only thing that stops it is Valium.
The death-throes of dying bugs, all of it.
Since starting the MP at a time when the alternative appeared to be to wait to die, I have been blessed (or am too stupid to know better) with the attitude that everything weird that happens to my body or mind now that I'm on the MP is probably IP. Even really unpleasant and debilitating stuff like tachycardia has lost its ability to scare me. I realize that there can be exceptions, and I trust I'm open to them, but for the most part I just ride 'em out as IPs.
(Of course, the day I fell down the stairs and knew from the pain level that I had hurt my back badly enough to need to be carried out in a stretcher, it was my dear partner Beth, worried that the ER folks would force me off Benicar, who kept trying to talk me into being able to get up on my own. She finally did call 911, and bless our little community hospital, they let me take my Benicar, even after they admitted me overnight. (But they wouldn't give me any morphine because the top number on my BP wouldn't go up over 100--which it never does, with or without Benicar.))
I think I would enjoy the kicking-baby thing. I only have one child and I loved being kicked.
Dody
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Lyme Arrhythmia Vertigo Meningitis Bipolar lithium tylenol cover up outside mod low lux inside ModPh2Jul07 Ph2Apr08 Ph3Feb09 D25 Oct09 7 Mar10 4
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Deb Grabetz
Support Team
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Posted: Tue Dec 1st, 2009 11:55 |
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Dody,
I so agree with you...it seems once we are "established" on the MP and understand the mechanics behind the IP, that we start to embrace the IP in a different way, rather than suffering. Or at least that is how I became.
When I have something new surface or some IP that seems related to a prior injury/illness it is almost exciting to know that there is healing going on, amidst the discomfort. In the past I have had carpel tunnel symptoms and over the last month my hands have hurt so badly that I wake up in the middle of the night in so much pain I can hardly stand it.
This has settled for now but I've realized from feeling the tendons in my arms that they no longer have that "cottage cheese" feel to them that they have had for many years. My massage therapist was the one who brought this to my attention, so it is obvious the MP has done a splendid job healing this!
____________________
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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