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Deb Grabetz
Support Team
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Posted: Sun Jul 25th, 2010 13:23 |
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Thought this might be a great place, for others to add information that they have run across, tips or techniques that help them on their MP journey...such as...
Did you know that sarcoidosis can affect the cranial nerves? This may be the reason why some MP patients get added benefit from cranial sacral therapy or "Stillpoint" as it is otherwise known!
Cranial nerve involvement is common in neurosarcoidosis, often affecting several cranial nerves. http://www.ajnr.org/cgi/reprint/18/9/1785.pdf
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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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Deb Grabetz
Support Team
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Posted: Thu Aug 5th, 2010 05:01 |
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Did you know?...the benefits of wearing a black eye mask when sleeping, are profound! Even though I have room darkening shades, I notice my sleep is less interrupted when I wear my black eye mask. Be sure to buy one that is comfortable and fits well. I have had to experiment with a couple different brands!
Sleep Eye Mask benefits
Wearing black eye mask can dramatically increase your quality of sleep. Having a good sleep is a must for your health and wellbeing. Light from the window, indoor lights from lamps or other electronic devices reduces the quality of sleep. Even if you fall asleep the quality of sleep is impacted. Black eye masks are great help to keep your sleep uninterrupted and to make you fall asleep.
Benefits
Street lamps and indoors illumination from laptops, cell phones, TV , satellite, video indicator lights usually give off light that diverts you from deep sleep. Sunrise light comes through curtains and gives a signal to the body that it is a time to wake up. If you are not required to wake up early this could be very distracting. Black eye mask in those situations can help you experience deep, relaxing sleep without any interruptions from light sources.
According to the National Sleep Foundation, “a dark bedroom contributes to better sleep. Try light-blocking curtains, drapes or an eye mask.” If you want both the dark bedroom and an inexpensive option, try a sleep mask.
Function
- Use your sleep eye mask during night or daytime when you want to have quality sleep. Black eye mask (travel mask) is useful in travel trips especially traveling with airplanes and trains. You should wear a sleep eye mask around your head covering your eyes. It is important that mask is firm and no or very little light gets through it.
Importance
Using a sleep mask is one way to help you achieve the goal of a good night’s sleep. In “Importance of Sleep: Six reasons not to scrimp on sleep,” Harvard Women’s Health Watch points out that getting your seven to eight hours of sleep will benefit your memory, weight, safety, mood, cardio visual health and immunity.
Before you buy
When buying look for mask that covers edges of your nose that should reduce light getting through. Black eye mask should be comfortable preferably with adjustable strap.
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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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PaulT
Member
| Joined: | Fri Feb 25th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 290 |
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Posted: Fri Aug 6th, 2010 04:22 |
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Just a quick note - My physio has kept me going through MP with Cranio Sacral and Myofacial treatments 
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Sarcoid diag 1/05 - Cough, fatigue, Feb 07 125D=59.6, Oct 07 25D=12, May 08 25D=7.5 avoid light/D, Noirs, covering up, Zinc Oxide on exposed skin.
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Deb Grabetz
Support Team
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Posted: Fri Aug 6th, 2010 13:49 |
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 Paul, It does make a difference. I try to go regularly and notice if I don't!
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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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Knochen
Member
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 380 |
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Posted: Sun Aug 8th, 2010 01:57 |
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I have used the Mindfold eye mask for years and found it to be the most totally blocking mask out there. You can wear this in the car (as a passenger, please!  ) and it will block the light for you. It really seals on your face.
http://www.amazon.com/Dream-Essentials-Mindfold-Sleeping-Mask/dp/B00011R3N0
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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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Deb Grabetz
Support Team
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Posted: Sun Aug 8th, 2010 11:50 |
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Thanks for the recommendation Knochen...going to order one today for myself! Glad you mentioned wearing in the car! I love wearing an eye mask when I'm flying (not working flight of course!!)
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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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Deb Grabetz
Support Team
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Posted: Fri Sep 10th, 2010 10:10 |
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Did you Know???....Fran Drescher was diagnosed in 2000 with uterine cancer...BUT for two years she was misdiagnosed 2 times, and and treated accordingly, 2 times by 8 different doctors! I watched her speak this morning on the The Joy Behar show.....reminding us all that the word "patient" means "passive" and that we are by no means to sit back and be passive when it comes to our health.
I've said this for years ,that in order to get well, we have to take an aggressive approach to what ails us....when we are sick we know something is wrong and not normal for us...no doctor can tell us we are not ill or how we feel---- no doctor can tell us what the best treatment is when we are not comfortable with it! When Cleveland Clinic offered me methotrexate (more steroids) for my sarc, I knew that I had to take an aggressive approach for my own good... This is why there are so many of us recovering on the Marshall Protocol!
God Bless!
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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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JanEE
Member
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Posted: Fri Sep 10th, 2010 20:28 |
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I also watched that show, but it was yesteray or the day before. It was a great message delivered really well. I hope lots of people heard it and paid attention.
The Joy Behar Show isn't even listed in our newspaper, so I found it originally after hearing her say she had her own show, and then I stumbled on it by accident, not knowing what channel it was on. It's aired here at the same time that Larry King is on---at 6pm and 9pm. I didn't realize it was also shown in the morning. I'd almost rather watch it then.
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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: Wed Sep 15th, 2010 17:34 |
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DID YOU KNOW....that isolation is the worst type of human suffering? This is the reason prisoners are often put into isolation as a means of punishment.
I'm listening to "The Five Languages of Love" on my IPod as I paint my kitchen....and this subject came up. Oh how it hit home the isolation that so many of us have faced with our illnesses...why? Because we have diseases which are not considered deadly, when in reality *they are deadly*...Because we do not have complete understanding from mainstream medicine or family and friends with these diseases...yet with the work of Dr. Marshall and those who understand inflammatory disease...*we are making so much progress*... Because we spent many days *in the dark*, *in pain* as we were progressing through the MP...and no one could really understand such a healing journey without experiencing it!
As I listened to this discussion on isolation I realized how very fortunate I have been... not because I've been ill...but because of the support system that over the past 3 1/2 years has been right here all the while...at my fingertips! Thank You to each of you for being there with a kind word...on the good days and the not so good days...for the *atta girl*...
I realized that it is not about the medical support that so many of us cannot give...I don't claim to be an expert here, I have no medical background and can only offer bits and pieces of my own journey...but it IS about a PM or thread reply saying *hope you feel better*-- *i've been there, it will get better, i promise* ---*the hang in theres, better days are ahead*...those are easy ways to help people through the terrible isolation that comes with illness!
It is the note you receive from another MP'er who is unable to work, unable to go out of the house...or the MP'er who has now recovered some of their life back from this protocol...or the MP'er who is living a full life again because of the MP....yet doesn't forget those who are still on this journey....that keep us far from the devastating isolation of this disease!
God Bless each of 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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HeatherK
Member
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Posted: Thu Sep 16th, 2010 13:59 |
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Oh Deb, do I ever agree !!! I have tried to convey to all around me about the Isolation that one feels on this treatment. Hind sight I should have moved into town before starting the MP ... But at that time a move could have been diastrous in my weakened/crashed state of health.... anyways thats water under the bridge now..
I marvel that we live in a era of such technological progress that has allowed us all to unite on these forums and be a support to one another from all points of the globe! Friends/ Family that are watching me improve on the MP, do mention this too. Especially my parents generation that did not have that option. If not for the internet, I would not have been able to find out about the Marshall Protocol. After registering with the MP forum I then found one other MP patient in my area of the country and did not feel so ISOLATED !!
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CFS for 5 yrs+ /started MP Sept20/07;( 25-D=24ng/ml, 1,25=47.5pg/ml.).. Dec/07(25-D= 14.4 ) Started Phase Two Mar 4/08; Dec 09(25D= 6); In blackout home/ wearing NoIRs/ Presumed celiac, wheat,dairy free.
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Deb Grabetz
Support Team
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Posted: Mon Sep 20th, 2010 13:21 |
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DID YOU KNOW....??? There is so much *bad advice* out there on the internet, even coming from so called support sites. Recently as I was tracking one of these sites I found these two posts and just shook my head.
Story #1
My dr. told me serval stories today about some patients who came to him with sarcoidosis. One girl has been having eye problems for years and nothing about it. her vision was going in and out, then she went to a dr in NC they said she might have sarcoid so she came to the dr. he started her on steriods and some other meds, weeks later her vision came back and things were all good. she missed many appt. at the eye dr and reg dr becasue she was feeling better.
she also stopped taking the steriods and eyedrops because she felt she was better. well one morning she woke up and she was blind and the dr. could not get her eyesight returned at all. so please follow the dr. directions. take your meds and that goes for me too.
Story #2
Another story he told me is about another person who quick her meds. she went down hill fast and died. so please steriods might be our enemy but it can save our lives. I think if i was taking my steriods like he ask me to do on our last visit my glands would not be and large and as painful. you need to take your meds and believe in your dr. if you dont then find someone else.
A person with sarcoid needs a dr who understands there illness. my dr is old school but knows how to handle sarcoid so once again please people steriods can save a life.
I just have to shake my head when I see this--- there is so much bad advice out there when it comes to steroids. Read through both of these stories and it is clear that the steroids eventually were both patients demise....*shaking my head*
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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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Freddie Ash
Member
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Posted: Tue Sep 21st, 2010 23:20 |
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HI DEB
This is Fred in WV. I see lots of these stories too. I read one first of the week that went like:
I was diagnosed with sarcoidosis and my doctor wanted me to see a cardiologist. So I call her office and she ask why I was coming there. The patient replied I have sarcoidosis. The doctor replied, "WHAT THE HELL IS THAT!"
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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Deb Grabetz
Support Team
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Posted: Wed Sep 22nd, 2010 11:47 |
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| Freddie, That was my comment when I was diagnosed...!!!
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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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Freddie Ash
Member
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Posted: Wed Sep 22nd, 2010 12:03 |
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HI DEB
This is Fred in WV. Just like I have said before, I have forgotten more about sarcoidosis than the local doctors ever knew about sarcoidosis.
Remember, we are all in this together and I am pullilng 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
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
| Status: |
Offline
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Posted: Sat Sep 25th, 2010 02:51 |
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DID YOU KNOW? that most of us have a time of day that could be thought of as our power hour... when we have the most energy.
For me, that was when my IP would pick up and I'd have trouble palliating it. I found that by taking 20 mg of Benicar 1 to 1.5 hours ahead of that time and 40mg at that time, gave me the most bang for my Benicar buck.
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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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