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expate
Member
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Posted: Fri Jan 16th, 2009 03:40 |
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I'll come up with the link later, but imagine my surprise to come home from work two days ago to hear a friend on the radio (NPR's "Talk of the Nation") in a piece on "losing everything". This was a fellow teacher in New Orleans who lost "everything" in Katrina.
OK, starting to tear up here. Won't say more... except that Bush was incredibly insensitive in his last press conference saying that people in New Orleans need to just get over it and move back (with no real support, read the homicide reports - daily) to NOLA. My son did move back. I'm proud of him. Yet, I totally worry about his safety. The feds are doing nothing to help.
odette
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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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Lottis
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Posted: Sun Feb 22nd, 2009 10:44 |
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 I am so sorry to have to do this feeding of negativity, but life is extremely unfair and hard for me too. I have to grump in, about the loss of friends. I can join the club.
eClair,
you have such a good distance to reality, when you write like this; 
I did not know that friendship for them came with a tag that read
"expires upon disability." |
I could write a lot about that, but I don't have the finger skill and energy right now.
Going straight to my point, though, I would have to say it has got something to do with evolution and the survival of the fittest.
Animals do it too, it is deeply rooted in our genes.
Who could imaging, that something like the MP science, would ever evolve. In the old way of understanding chronic disease, we were doomed. Not a very good type to breed on and not good to encourage to be part of the community. The survival type of community would silently agree upon to starve them, chase them away and let them die by themselves.
The survival of the fittest
But I will work off the bitterness, and take the mind of understanding and forgiving, because they just don't know what they are doing, they don't understand, so they cannot be blamed. They follow an instinct, forgetting about moral and ethics. 
We are so lucky to have found the MP in time. We have new friends who will help us through the bitterness, and we will come out on the other side, with not only a stronger body and mind, but also with an experience that has deepened our wisdom. 
Last edited on Sun Feb 22nd, 2009 10:48 by Lottis
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HTN,LVH,arrhythmia,hypercholesterol e.c.t. IBS fatique chr rhinit acne rosasea salivestones-89, gallblader-99, e.c.t. 14feb-07 25D 7,8 &1,25D 38.http://marshallprotocol.com/view_topic.php?id=9892&forum_id=20&jump_to=173725#p173725
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eClaire
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Posted: Sun Feb 22nd, 2009 12:45 |
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Lottis,
I have been thinking quite a bit about the very same thing: a genetic basis for the "flee the disabled" that we see. And so God bless the few friends or loved ones in our lives who don't flee and can help us through the MP. Aside from overcoming the bitterness (still don't see my way clear to being friends again with any of the folk who left me by the wayside), my hope is that my compassion is expanded even more as the result of my experience (to include the folk who left me by the way side). I do know that I would not let how I have treated to stop me from helping any of these folk should they become ill (whether I reinstate friendships or not). Having known the abandonment, I could not NOT step in and be of help.
Besides, we know we can fight off much illness with the MP and that will make us all the stronger.
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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carol
Moderator
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Posted: Sun Feb 22nd, 2009 16:21 |
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Speaking of evolution and survival of the fittest, maybe it is those of us who are smart enough to understand the science behind the MP and have enough moxie to take on the treatment that will ultimately prevail. Our progeny will live on without the curse of Th1 disease.
Did you know that February 12 was the 200th anniversary of the birth of Charles Darwin? He and Abraham Lincoln were born on the same day.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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eClaire
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Posted: Mon Feb 23rd, 2009 22:31 |
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I have been having eye problems ever since taking a benzo for sleep issues last fall. (I stopped using them because they stopped helping with my sleep and my eyes improved somewhat.)
Problem? My eyelids stick to my eyes during sleep.
My eyes are very dry and my doc suggested eye drops before bed. No help at all. So I'm trying to remember to put the eye drops next to the bed so I can put them on my shut eyes in the hope that the liquid will seep through and make opening my eyes less painful. (Yes, it really feels like my cornea is going to be ripped off and so I have to gently rub my eyes a bit and they then smart and start to water.) I keep forgetting to put the eye drops next to the bed and this is why I am grumping today...I hope this helps me remember to put out the eye drops.
What is weird is that even a small amount of diazapam makes the problem worse.
All this while my mouth is less dry. So weird...grump, grump, grump. 
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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expate
Member
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Posted: Mon Feb 23rd, 2009 23:43 |
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I'm sorry. It's just the sum total of all the little things that just gets to you.
Hang in there,
 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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Joyful
Foundation Staff
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Posted: Tue Feb 24th, 2009 00:37 |
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Dry eyes... ... sounds like IP to me.
Some eye solutions for night time are basically lipid based (lipid = fat = lubricant).
On a couple occasions I have used the tiniest bit of coconut oil before retiring.
(I get those red 'tear drop' lines on the outer corners of my eyes at night.)
But with all your sensitivities, I can't imagine what kind of lipid would be safe for you.
Sorry for the discomfort!
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Aunt Diana
Member
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Posted: Thu Feb 26th, 2009 05:28 |
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There are some very gentle lubricated eye drops....but I still like the unlubricated ones. The lubricated ones seem to leave a gummy residue.
I do what you do, Claire. Drop them into my closed eyes in the am and they work their way through the closed lids and help me open my eyes much more comfortably. The dryness waxes and wanes with IP.
My night table has a drawer and a shelf so I just keep these items there all the time. No need to remember anything. Perhaps a small purse would serve as well.
Having very dry eyes can be very painful. Not a good way to start your day.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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eClaire
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Posted: Thu Feb 26th, 2009 11:07 |
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The good thing (in all this grumping about the eyes) is that the eye stickiness seems to be a good indicator of when I am ready to move up to the next level of abx. The eyes get better. Ramp, the eyes get worse. And so until it wanes as an IP (hopefully never to wax again), it has become something of a measurement, as right now the bulk of my IP is relatively silent kidney IP (and the ongoing insomnia IP that has gotten somewhat better but has been a constant from the beginning) and so having something that is noticeable, measurable for ramping purposes is a good thing.
Claire
P.S. Thanks for the support guys.
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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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expate
Member
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Posted: Wed Mar 4th, 2009 23:43 |
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New grump... I seem unable to find a way to start a new thread in this forum.
Soooo... I was going to call it, "MP Stealth Skills".
My first entry was going to deal with the superpower I have, by virtue of being on the MP, of being able to walk into the cinema once the previews have begun and the house lights are down, to spot a seat, see the stairs, and gracefully (with my MP bat vision) navigate my way to a seat.
My second entry was going to be, "Sensory Techniques for Detecting Vitamin D". It was to center around the hot flashes I had after eating Sublime Roasted Chicken with Crispy Skin. It was. I did. *sigh*
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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Deb Grabetz
Moderator
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Posted: Thu Mar 5th, 2009 00:15 |
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Odette,
You gave me a chuckle when I read "stealth"...I have a very good friend who always uses what we consider in our Bunco club as "big words"...she loves the word stealth and when we first saw it in one of her emails, well lets just say the emails were flying back and forth about how intelligent we all thought she was. We still tease her and ask her to teach us these big words...so thank you for the smile. One year for Christmas she bought us all Webster dictionaries so that we could learn some of these "big words" on our own...!
Claire, I'm sorry to hear about those dry eyes as I get them occasionally too. Would love for someone to post something that is MP compliant and works, to help out with the dry eyes! It seems when I use eye drops, such as Refresh or Systane, my sinuses act up, go figure!
Deb
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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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goyop
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Posted: Mon Mar 9th, 2009 22:01 |
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To eClaire and other fellow sufferers,
Chronic illness has been described by some as very lonely. We are all being made aware of just how lonely. The end result is quite simple - people drop off. The causes and reasons are many. The bottom line is that only people who have suffered are empathetic to suffering. Often times it is just not possible to understand without having experienced it. Only a very few, truly unique individuals have compassion without experience suffering themselves. But most likely they either have experienced it in some form or were alongside someone who did.
We use reason to try to understand a very emotional hurt. Hopefully, we eventually work through it although it may always hurt. For me, being isolated is the worst. Maybe it is the same for others. I do what I can on my part but it is very limited. What do I make of all my friends who never come see me or check on me? Who knows but it is universal to chronic illness. Last year some Hollywood star wrote a book about recovering from cancer and said the isolation was the worst.
I was blessed to grow up with parents who had a special "ministry". They made it part of their lives to visit shut ins. They would bring some treat and just sit and talk. They often came home radiant from what they received by this act of giving. I didn't understand it at the time but I knew it was really important. Now I understand it.
So, I don't have any idea why friends disappear. Our society is fast paced. We value those who can contribute. There are few multi generation families living together. We live in isolation and then wonder why we feel isolated. People are selfish. We are selfish. But then there are the angels. Thankfully, there are 2 or 3 in my life. Hopefully, we all have at least one who doesn't forget us and checks on us from time to time. Hold them dear and when you are able be an angel to others.
That is my pile of words for what it is worth.
Suffering with you,
Greg
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Sarcoidosis Valley Fever| 1,25D-46| MP 10/07| Provigil trazadone| NoIRs| low lux home| limited outings covered up| 25D-18| ph2 Feb08|Feb 08 25D-12
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eClaire
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Posted: Mon Mar 9th, 2009 22:47 |
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Greg...I say Amen to those angels.
One such angel was barely more than an acquaintance before I became disabled and yet my friend Eric (a straight man 13 years my junior with no particular interest in having a lesbian as a friend) stayed in contact. And then, when I reached out to arrange monthly friend dates with the few friends (who stayed in contact even less than Eric) when my partner decided to leave because of my disability, Eric asked for two dates a month.
He and his son now live with me and take care of all of the things the housekeeper does not take care of, and he is engaged to one of my other friend dates and so I now see her more often. He and his son are truly Angels. They've been here for over six weeks and we have family meetings every two weeks, where we end each meeting with something positive, and games and laughter and talk in between. It's fun having teenagers around (his daughter also visits).
What's nice is that Eric and his fiance know the people who have turned away from me and so they get to hear their rationalizations, and Eric says that despite how they have treated me, they would be the first people to talk the talk of compassion. So my perceptions have been affirmed and rather than make me feel sad, it has allowed me to release them and the sadness entirely (knowing what is being said is better than not knowing what is being said...at least then you know what you are grieving and getting over). Another nice thing is that Eric has told me that he thinks that I am handling my disability about as well as anyone could emotionally, mentally, spiritually and that I am not self pitying. He said that this is why he knew he could live with me. So my experience of me, as a person, has also been validated again.
So I am no longer isolated. I actually have a family in my home for a time, for however long this lasts (I'm expecting he will get married in the next 1.5 to 2.5 years). That's what he and his son wanted, a family, and that's what we are creating. A weirdly configured extended sort of family, but a family.
Thanks for reminding us of the angels Greg.
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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caroldeleah
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Posted: Tue Mar 10th, 2009 10:21 |
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Deb, Are the Refresh eye drops the one-time use with no preservatives? Those are working fine for Deleah.
Carol
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Uveitis|HashimotosHypothyroidism|Thyroid Nodule|Arthralgias|RefractiveMyopia|1,25D34| Ph1Aug08|Ph2Nov08|Ph3Jun09|25D 6(02/09)|25D 9(12/08)|Combigan/Cytomel/RefreshPlusSgl/NoIRs
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JohnMcC
Registered
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Posted: Tue Mar 10th, 2009 13:12 |
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This was sent to me with an effort to be amusing...unfortunately thanks to modified phase II meds my mind was not in the mood....
http://www.telegraph.co.uk/news/newstopics/howaboutthat/4883791/Revealed-The-secrets-of-belly-button-fluff.html
Folks are dying, suffering from TH1 disease etc, etc, etc and this bozo is getting funding to study belly fluff...probably feels like he is contributing to science.....how many millions/billions have been wasted on nonsense 
never mind the fluff - support the research that will help people......ggggrrr!!!!
rant over!
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Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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eClaire
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Posted: Tue Mar 10th, 2009 18:48 |
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John,
While I could not bring myself to read a scientific article on bellybutton fluff, your rant made me chuckle. Thanks. A laugh is always welcome.
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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JohnMcC
Registered
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Posted: Thu Mar 12th, 2009 13:04 |
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Hi Clair,
glad to have made a smile ...
John
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Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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Ebeth
Member
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Posted: Fri Mar 13th, 2009 03:01 |
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Regarding the dry eyes: I would recommend trying generic petroleum-based eye ointment that I found at Wal-mart (http://tinyurl.com/da8snw), but I would imagine is available at drugstores too. Or try searching for "eye ointment" at http://www.drugstore.com .
It comes in a tube like toothpaste and is thick and gooey. Right before going to bed, I gently pull down my bottom eyelid and squeeze about 1/4-3/8 of an inch onto each eye.
It makes it difficult to see, so if you do try it, you want to be able to go to bed directly afterwards and close your eyes. Because it's so thick, it stays on your eyes unlike the liquid drops and really seems to help moisturize them. You might have some slight residue in the morning, but hopefully your eyes will feel better.
~Elizabeth
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Sarcoidosis/liver hypothyroid 125D49 Ph1Feb06 Ph2Jun06 Ph3Jan07 break Jul-Oct07 surg Mino only Feb-Jun08 2nd surg Armour thyroid 25D9(8/07)
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eClaire
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Posted: Fri Mar 13th, 2009 03:17 |
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I tried using the organic coconut oil that I have in the house. I used an empty refresh container to transfer the oil to my eyes. It was a little blurry, but one application helped for two nights. I'll be doing it again tonight. I think this may be the answer for me. It's cheap, organic and I didn't have to go anywhere for it. Thanks for the help guys!!!
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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eClaire
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Posted: Sat Mar 28th, 2009 03:09 |
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Am I the only grumpy person out there?
Today I am despondent, which is not my norm (and not IP). I have been on the MP 2 1/3 years and have yet to turn the energy corner. In fact, my post exertional fatigue (how long it take me to recover) has gotten dramatically worse since last fall.
My energy, which has been worse since being on the MP (entirely bedridden first 4 or 5 months), leaving me just slightly better (and I do mean slightly) than being bedridden since month six. Even as I have gotten over being bedridden, last fall when I started Z (only tried it once) and my kidney labs increased again (for the second time) my energy took a turn for the worse. (Because of sxs and kidney labs, I am back to M alone and just dropped back to 50mg after my creatinine rose from 1.57 to 2.14 when I ramped to 75mg. It had fallen from 1.66 to 1.57 while starting back up on M and the 25 and 50mg levels.)
I went from being able to expend 30 to 45minutes of energy one to three times a week to being at point where if I do that I have difficulty fixing a simple meal for days or weeks on end. Severe post exertional fatigue. I haven't seen anything like this since one year before starting the MP.
I wonder if there are others like me who got not only worse when it came to fatigue when they started the MP, but much worse two years in. Did you eventually begin to turn around.
I mean, I can tolerate indoor light in my eyes now. Florescent included. So I can see improvement. Yet, the excruciating nature of this fatigue has me feeling like I am just prolonging my death. Sorry, but I am bummed, losing hope.
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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