Dolores Re: My diet regime

[Guest guest]

Hi Dolores,

I just got off MP due to stomach problems, have completed PREV-PAK for h.pylori

and take MUMIO on and off.

what is your stomach problem, diagnosis?

if you are anemic, your nights are restless? ...bleeding can occur with stomach

ulcers, check b12 and iron.

hope you feel better,

Ana

rheumatic

From: moniquesauve@...

Date: Fri, 11 Mar 2011 17:41:27 -0800

Subject: rheumatic Dolores Re: My diet regime

Sorry to hear it Dolores. Hope you get feeling better very soon.

It's a tough road getting back to where I was. It took 5 years to get

to remission and three months to fall out. Right now, I am tired all

the time. And if I eat wrong, my stomach keeps me awake all night. The

burning wakes me up. and then add sleep apnea to it and I am a mess

again. Need to get the insurance company to issue me new tubing for the

CPAP machine. But I have little fight left in me. Trying to hang in

there is where I am at present. It is good to hear from you again. How

are things at home. If you want to write to me personally go to my home

e:mail site..... I just added it up in my head. My mom passed Oct. 21

and then I ran out of Mino. the kids told me they were coming for

Christmas and I ran around the stores a lot getting everything

ready. At the same time I was settling my mom's estate and feeling out

of sorts about the whole process of death and certainly was worn down

taking care of her during her last

days. So, everything sort of came crashing down. I loved having the

kids, but breathed a sigh of relief when they went. By then I was

exhausted and then my fight began with the Insurance & Pharmaceutical

company and I had to visit three docs and convince them to write letters

for me. Saw 6, but only three wrote, then I had surgery on my eye which

I still can't see out of and in the middle of getting some more

opinions. Waiting on my cousin to give me the name & number of his

opthalmologist and then may fly to NYU Eye Instittute if I need further

surgery. So, I'd say that since Sept or Oct. the stress has been

mounting on me and no wonder I feel so shitty. But I am a fighter and

I'll get back there hopefully by spring or summer and you'll all know

about it as I will be my old self again. Take care and hugs all

around. Dolores

[Guest guest]

I am in the hospital with what looks schematic colitis of the descending colon.

That I got from the cat scan. Have to have a colonscopy on monday

I just want to get out of the hospital by tues! Been here since last tues

where the horrible ER drs and staff almost killed me. I was in secondary adrenal

crisis and it wasn't until my blood pressure was super low and I was passing out

that they realized I needed to be admitted. Severe gi obstruction and 12 bloody

diarrhea attacks, hx of other autoimmune problems, didn't convince. One aide

told me that it was improper to have diarrhea on an ER bed! Once I was admitted

on the 2nd floor of the hospital, the care from most of the nurses and staff has

helped a lot. Doctors though are passive and not good at communicating.

Dolores, I too have been under a lot of stress. My mom died in Aug 2010 and was

sick on a feeding tube for three years. My father and mother lived with me and

now just my dad does Mom died at 88. My dad will be 88 in March. He has slowed

down a lot. And I was working part-time. Now I have to take time off and focus

on myself!

I hardly post. I got involved in this group back in approximate 1997. I

improved on doxy but stopped in around 2008, particular bec my good friend

treppel cantor from this group got sick with lung cancer so I had no one to

share the stress of driving to Nj with. Also I was busying returning to work on

a part time basis. And was stressed and overdoing too much. My local drs

wouldn't prescribe antibiotics and instead I ended up on too much prednisone.

I had just started to see two alternative drs when I ended up I'm the hospital.

I think of the strength that this people have in this group. I may not write

much but I read a lot and thank you for all your kindness and information.

Carol e from ny

Sent from my iPhone

On Mar 11, 2011, at 9:46 PM, Marzea <petrumarzea@...> wrote:

>

> Hi Dolores,

> I just got off MP due to stomach problems, have completed PREV-PAK for

h.pylori and take MUMIO on and off.

> what is your stomach problem, diagnosis?

> if you are anemic, your nights are restless? ...bleeding can occur with

stomach ulcers, check b12 and iron.

> hope you feel better,

> Ana

>

>

>

>

>

>

>

> rheumatic

> From: moniquesauve@...

> Date: Fri, 11 Mar 2011 17:41:27 -0800

> Subject: rheumatic Dolores Re: My diet regime

>

>

>

>

>

>

> Sorry to hear it Dolores. Hope you get feeling better very soon.

>

>

>

> It's a tough road getting back to where I was. It took 5 years to get

> to remission and three months to fall out. Right now, I am tired all

> the time. And if I eat wrong, my stomach keeps me awake all night. The

> burning wakes me up. and then add sleep apnea to it and I am a mess

> again. Need to get the insurance company to issue me new tubing for the

> CPAP machine. But I have little fight left in me. Trying to hang in

> there is where I am at present. It is good to hear from you again. How

> are things at home. If you want to write to me personally go to my home

> e:mail site..... I just added it up in my head. My mom passed Oct. 21

> and then I ran out of Mino. the kids told me they were coming for

> Christmas and I ran around the stores a lot getting everything

> ready. At the same time I was settling my mom's estate and feeling out

> of sorts about the whole process of death and certainly was worn down

> taking care of her during her last

> days. So, everything sort of came crashing down. I loved having the

> kids, but breathed a sigh of relief when they went. By then I was

> exhausted and then my fight began with the Insurance & Pharmaceutical

> company and I had to visit three docs and convince them to write letters

> for me. Saw 6, but only three wrote, then I had surgery on my eye which

> I still can't see out of and in the middle of getting some more

> opinions. Waiting on my cousin to give me the name & number of his

> opthalmologist and then may fly to NYU Eye Instittute if I need further

> surgery. So, I'd say that since Sept or Oct. the stress has been

> mounting on me and no wonder I feel so shitty. But I am a fighter and

> I'll get back there hopefully by spring or summer and you'll all know

> about it as I will be my old self again. Take care and hugs all

> around. Dolores

>

>

>

>

>

[Guest guest]

Hi Carol Esposito,  Wish I had been able to meet you and become friends when I

lived in NY.  I had to leave NY, first because we were offered a job in Texas,

then I got word that my mom was losing it to Alzs in Florida.  Doc said she

could no longer live alone, so we got an apt. and had her come stay with us. in

Florida.   My Scleroderma was healing, but I still wasn't completely in

remission and it was still too cold for all of us, so we chose to move to

Puerto Rico. That is when I went into remission.   Been here almost a year

and a half.  But, I may be able to get back to NY.  Have applied for an

apartment near NYU where my friend has a veryt nice apt. for seniors and the

disabled.  I am on the waiting list, so when I get back to NY, we will

definitely get together.  I also want to see Sohelia again.  She is such a

love.  Hope you are doing better Sohelia. I have lots of friends in NY whom

I miss a lot and can't wait to get back to

see them.  Sorry to hear you are in the hospital.  I learned a long time ago

to never go to the ER.  First contact your doctor and have him/her preadmit

you.  Other wise you could spend days in the ER and drop dead waiting for

someone to call your name.  My doc wanted to put me in the hospital for a

colonoscopy last week, but I declined.  I'd rather deal with it myself.   I

learned my lesson when my mom was in the hospital.  They run the place here

like a mash unit.  Would you believe that in P.R. you must bring your own

gown, blanket, sheets, pillows, etc.  Do you know how many germs come into a

hospital by everybody bringing their luggage.? Then they set the A/C below

freezing and I swear it was snowing in my mom's room.  I will not go to a

hospital in P.R. if I were dying.  That is why I chose an Insurance plan that

has helicopter service and plane service to take me back to the US mainland in

the event of an emergency.  

What hospital are you in that the lady in the ER was so rude to you.  My

hospital is NYU.  And I love all my docs in NY.  In fact, although I love the

weather here, I will always consider NY my home.  It would be cool if I could

live in NY during the warm weather and spend winters here.  Hope the

colonoscopy goes well.  They do give you anesthesia, so you won't feel a

thing.  The worst part to me was drinking that gallon or two of liquid to

make you empty before they do the procedure.  If all is well, you will

probably go home the next day.  I had one done and all they could find was

inflammation.  That goes along with Scleroderma.  Same for H. Pylori. 

Totally clear.  My problem is all part of the scleroderma and the crap I

sometimes eat.  Once I was in remission, I could eat anything, but I need to

get back there again and then I will be fine.  Take care and stay in touch. 

P.S. I have no idea what schematic colitis is.  You

will have to tell me.  What do they do for that if it is positive.?  I know

stress is a big part of this and taking care of elderly parents when you are

sick yourself is not in your best interest.  My mom died at 96.  She had a

long life.  Still I felt bad at the thought of all of our mortality but very

releaved that I was free of the work.  It is not easy.  Thank you all for the

support.  I am feeling better tonight.  had stomach pains erlier, but some

probiotics took care of the problem and now I will stick my head in the fridge

and start the trouble all ove again.  I am hungry.   G'morning.  Dolores

   

>

> Hi Dolores,

> I just got off MP due to stomach problems, have completed PREV-PAK for

h.pylori and take MUMIO on and off.

> what is your stomach problem, diagnosis?

> if you are anemic, your nights are restless? ...bleeding can occur with

stomach ulcers, check b12 and iron.

> hope you feel better,

> Ana

>

>

>

>

>

>

>

> rheumatic

> From: moniquesauve@...

> Date: Fri, 11 Mar 2011 17:41:27 -0800

> Subject: rheumatic Dolores Re: My diet regime

>

>

>

>

>

>

> Sorry to hear it Dolores. Hope you get feeling better very soon.

>

>

>

> It's a tough road getting back to where I was. It took 5 years to get

> to remission and three months to fall out. Right now, I am tired all

> the time. And if I eat wrong, my stomach keeps me awake all night. The

> burning wakes me up. and then add sleep apnea to it and I am a mess

> again. Need to get the insurance company to issue me new tubing for the

> CPAP machine. But I have little fight left in me. Trying to hang in

> there is where I am at present. It is good to hear from you again. How

> are things at home. If you want to write to me personally go to my home

> e:mail site..... I just added it up in my head. My mom passed Oct. 21

> and then I ran out of Mino. the kids told me they were coming for

> Christmas and I ran around the stores a lot getting everything

> ready. At the same time I was settling my mom's estate and feeling out

> of sorts about the whole process of death and certainly was worn down

> taking care of her during her last

> days. So, everything sort of came crashing down. I loved having the

> kids, but breathed a sigh of relief when they went. By then I was

> exhausted and then my fight began with the Insurance & Pharmaceutical

> company and I had to visit three docs and convince them to write letters

> for me. Saw 6, but only three wrote, then I had surgery on my eye which

> I still can't see out of and in the middle of getting some more

> opinions. Waiting on my cousin to give me the name & number of his

> opthalmologist and then may fly to NYU Eye Instittute if I need further

> surgery. So, I'd say that since Sept or Oct. the stress has been

> mounting on me and no wonder I feel so shitty. But I am a fighter and

> I'll get back there hopefully by spring or summer and you'll all know

> about it as I will be my old self again. Take care and hugs all

> around. Dolores

>

>

>

>

>

[Guest guest]

Hi Ana, I am not anemic. Nor have H.Pylori or any ulcer.   My stomach problems

ae all from inflammation from scleroderma.  A few months of Minocin and I should

be back in remission again.  I hope.  Thanks for your info and sentiment. Take

care, Dolores  

From: Marzea <petrumarzea@...>

Subject: RE: rheumatic Dolores Re: My diet regime

rheumatic

Date: Friday, March 11, 2011, 9:46 PM

Hi Dolores,

I just got off MP due to stomach problems, have completed PREV-PAK for h.pylori

and take MUMIO on and off.

what is your stomach problem, diagnosis?

if you are anemic, your nights are restless? ...bleeding can occur with stomach

ulcers, check b12 and iron.

hope you feel better,

Ana

rheumatic

From: moniquesauve@...

Date: Fri, 11 Mar 2011 17:41:27 -0800

Subject: rheumatic Dolores Re: My diet regime

 

Sorry to hear it Dolores. Hope you get feeling better very soon.

It's a tough road getting back to where I was. It took 5 years to get

to remission and three months to fall out. Right now, I am tired all

the time. And if I eat wrong, my stomach keeps me awake all night. The

burning wakes me up. and then add sleep apnea to it and I am a mess

again. Need to get the insurance company to issue me new tubing for the

CPAP machine. But I have little fight left in me. Trying to hang in

there is where I am at present. It is good to hear from you again. How

are things at home. If you want to write to me personally go to my home

e:mail site..... I just added it up in my head. My mom passed Oct. 21

and then I ran out of Mino. the kids told me they were coming for

Christmas and I ran around the stores a lot getting everything

ready. At the same time I was settling my mom's estate and feeling out

of sorts about the whole process of death and certainly was worn down

taking care of her during her last

days. So, everything sort of came crashing down. I loved having the

kids, but breathed a sigh of relief when they went. By then I was

exhausted and then my fight began with the Insurance & Pharmaceutical

company and I had to visit three docs and convince them to write letters

for me. Saw 6, but only three wrote, then I had surgery on my eye which

I still can't see out of and in the middle of getting some more

opinions. Waiting on my cousin to give me the name & number of his

opthalmologist and then may fly to NYU Eye Instittute if I need further

surgery. So, I'd say that since Sept or Oct. the stress has been

mounting on me and no wonder I feel so shitty. But I am a fighter and

I'll get back there hopefully by spring or summer and you'll all know

about it as I will be my old self again. Take care and hugs all

around. Dolores

                         

[Guest guest]

Thank you .  I will put my re-remmission up on a bill board when it

happens again.    Thanks for your support.  Dolores

From: Sauve <moniquesauve@...>

Subject: rheumatic Dolores Re: My diet regime

rheumatic

Date: Friday, March 11, 2011, 8:41 PM

 

Sorry to hear it Dolores. Hope you get feeling better very soon.

It's a tough road getting back to where I was. It took 5 years to get

to remission and three months to fall out. Right now, I am tired all

the time. And if I eat wrong, my stomach keeps me awake all night. The

burning wakes me up. and then add sleep apnea to it and I am a mess

again. Need to get the insurance company to issue me new tubing for the

CPAP machine. But I have little fight left in me. Trying to hang in

there is where I am at present. It is good to hear from you again. How

are things at home. If you want to write to me personally go to my home

e:mail site..... I just added it up in my head. My mom passed Oct. 21

and then I ran out of Mino. the kids told me they were coming for

Christmas and I ran around the stores a lot getting everything

ready. At the same time I was settling my mom's estate and feeling out

of sorts about the whole process of death and certainly was worn down

taking care of her during her last

days. So, everything sort of came crashing down. I loved having the

kids, but breathed a sigh of relief when they went. By then I was

exhausted and then my fight began with the Insurance & Pharmaceutical

company and I had to visit three docs and convince them to write letters

for me. Saw 6, but only three wrote, then I had surgery on my eye which

I still can't see out of and in the middle of getting some more

opinions. Waiting on my cousin to give me the name & number of his

opthalmologist and then may fly to NYU Eye Instittute if I need further

surgery. So, I'd say that since Sept or Oct. the stress has been

mounting on me and no wonder I feel so shitty. But I am a fighter and

I'll get back there hopefully by spring or summer and you'll all know

about it as I will be my old self again. Take care and hugs all

around. Dolores

[Guest guest]

Carol, we are a generation who inherited the physical and mental stressors of

our children and our parents and along with diet and environmental changes, I

think we really caught the brunt of it all resulting in lost health. You will

be in my thoughts and prayers and when you go home, get back on that old horse

you have learned about and ride back to health. Keep us informed.

rheumatic Dolores Re: My diet regime

>

>

>

>

>

>

> Sorry to hear it Dolores. Hope you get feeling better very soon.

>

>

>

> It's a tough road getting back to where I was. It took 5 years to get

> to remission and three months to fall out. Right now, I am tired all

> the time. And if I eat wrong, my stomach keeps me awake all night. The

> burning wakes me up. and then add sleep apnea to it and I am a mess

> again. Need to get the insurance company to issue me new tubing for the

> CPAP machine. But I have little fight left in me. Trying to hang in

> there is where I am at present. It is good to hear from you again. How

> are things at home. If you want to write to me personally go to my home

> e:mail site..... I just added it up in my head. My mom passed Oct. 21

> and then I ran out of Mino. the kids told me they were coming for

> Christmas and I ran around the stores a lot getting everything

> ready. At the same time I was settling my mom's estate and feeling out

> of sorts about the whole process of death and certainly was worn down

> taking care of her during her last

> days. So, everything sort of came crashing down. I loved having the

> kids, but breathed a sigh of relief when they went. By then I was

> exhausted and then my fight began with the Insurance & Pharmaceutical

> company and I had to visit three docs and convince them to write letters

> for me. Saw 6, but only three wrote, then I had surgery on my eye which

> I still can't see out of and in the middle of getting some more

> opinions. Waiting on my cousin to give me the name & number of his

> opthalmologist and then may fly to NYU Eye Instittute if I need further

> surgery. So, I'd say that since Sept or Oct. the stress has been

> mounting on me and no wonder I feel so shitty. But I am a fighter and

> I'll get back there hopefully by spring or summer and you'll all know

> about it as I will be my old self again. Take care and hugs all

> around. Dolores

>

>

>

>

>

[Guest guest]

I just attended a weekend of classes offered by the Organic Growers School in

Asheville, NC (organicgrowersschool.org). One of the presenters said the three

most important things are soil, water, and community.

Dolores, with the network of folks from this site, the community we have

created, I feel we could have rallied and those with Minocin might have offered

to send you a few capsules to keep you in remission until you got your insurance

straightened out. I am on generic...but I would have gladly sent you a

month's supply.

As for " organic " that is a term that requires meeting FDA criteria. If it isn't

grown with chemicals, it is GREAT for you to eat...assuming the land wasn't

fertilized and sprayed previously. Sounds like your backyard produce is ideal!

Someone from this group suggested Aloe Vera gel for stomach issues. 1 tsp. twice

a day. I bought a large bottle from Vitamin Shoppe for $6. It has a strange

taste...I do believe it is helping me. Stops the burn at night.

Amy

>

>

> Hi Dolores,

> I just got off MP due to stomach problems, have completed PREV-PAK for

h.pylori and take MUMIO on and off.

> what is your stomach problem, diagnosis?

> if you are anemic, your nights are restless? ...bleeding can occur with

stomach ulcers, check b12 and iron.

> hope you feel better,

> Ana

>

>

>

> It's a tough road getting back to where I was. It took 5 years to get

> to remission and three months to fall out. Right now, I am tired all

> the time. And if I eat wrong, my stomach keeps me awake all night. The

> burning wakes me up. and then add sleep apnea to it and I am a mess

> again. Need to get the insurance company to issue me new tubing for the

> CPAP machine. But I have little fight left in me. Trying to hang in

> there is where I am at present. It is good to hear from you again. How

> are things at home. If you want to write to me personally go to my home

> e:mail site..... I just added it up in my head. My mom passed Oct. 21

> and then I ran out of Mino.

[Guest guest]

As far as I know, This Island was created from volcanic ash coming up from the

ocean and there are no active volcanos now.  The highest peak is El Yunque in

the rainforest.  ( pronounced) Yunkay!  And the entire Island is green with

lots of foilage that grows wild all year round.  Mike and I hiked it once. 

The trail ends at a beautiful but cold waterfall with lots of pools all

around.  Everyone jumped in but Mike & I.  I was still not in full remission

at the time in 2007, and afraid I would turn blue all over.  I would like t

take the hike again, but now that I live here and not a tourist, I'm lucky if I

make it anywhere. My friend recently went to NY for two days and went places I

never did during my lifetime of living there.  I still haven't been to the top

of the Empire State building. 

 

So, I believe it is all organic and the people around me just dig a hole and

plant.  I planted a papaya tree in a pot and that now needs replanting as it is

turning into a tree and that was only 6 months ago.  I used organic dirt I

bought in a bag at Walmart for 89 cents. Mostly the fruits just fall from the

trees and rot on the ground.  The seeds imbed themselves and it is not unusual

to see baby trees beside larger ones.  That is what bananas do. So, I guess it

is all organic,  There are lots of vendors beside the road who live off their

produce that grows in their yard.  Nobody lives next to my house. The lady

who lived there died long ago and the family has neglected it.  They have a

mango tree so big, It shades the whole area.  The yard is several

acres. There are thousands of mangos falling from the tree daily. It is

impossible to keep up with it.  And the tree is so high, no one could reach the

top, so the fruit just falls off and

I guess the geckos, lizzards and iguanas all feed off the land.  We found an

entire family of baby frogs in a plant we just planted a week ago.  They moved

about when Mike went to water it.  We get these sudden quick rain showers often

so we don't have to water our plants.  But Mike put this particular plant under

the canopy, so it doesn't get the rained on like the others.  That is how he

found the frog family.  It is really a lovely place to live.  But don't get

sick here!  Medical fascilities are horrible. That is why we are going to get

an apt. in NY again and remain snowbirds forever.  Dolores & Mike      

From: Amy <muttville@...>

Subject: rheumatic Dolores Re: My diet regime

rheumatic

Date: Sunday, March 13, 2011, 3:04 PM

 

I just attended a weekend of classes offered by the Organic Growers School in

Asheville, NC (organicgrowersschool.org). One of the presenters said the three

most important things are soil, water, and community.

Dolores, with the network of folks from this site, the community we have

created, I feel we could have rallied and those with Minocin might have offered

to send you a few capsules to keep you in remission until you got your insurance

straightened out. I am on generic...but I would have gladly sent you a

month's supply.

As for " organic " that is a term that requires meeting FDA criteria. If it isn't

grown with chemicals, it is GREAT for you to eat...assuming the land wasn't

fertilized and sprayed previously. Sounds like your backyard produce is ideal!

Someone from this group suggested Aloe Vera gel for stomach issues. 1 tsp. twice

a day. I bought a large bottle from Vitamin Shoppe for $6. It has a strange

taste...I do believe it is helping me. Stops the burn at night.

Amy

>

>

> Hi Dolores,

> I just got off MP due to stomach problems, have completed PREV-PAK for

h.pylori and take MUMIO on and off.

> what is your stomach problem, diagnosis?

> if you are anemic, your nights are restless? ...bleeding can occur with

stomach ulcers, check b12 and iron.

> hope you feel better,

> Ana

>

>

>

> It's a tough road getting back to where I was. It took 5 years to get

> to remission and three months to fall out. Right now, I am tired all

> the time. And if I eat wrong, my stomach keeps me awake all night. The

> burning wakes me up. and then add sleep apnea to it and I am a mess

> again. Need to get the insurance company to issue me new tubing for the

> CPAP machine. But I have little fight left in me. Trying to hang in

> there is where I am at present. It is good to hear from you again. How

> are things at home. If you want to write to me personally go to my home

> e:mail site..... I just added it up in my head. My mom passed Oct. 21

> and then I ran out of Mino.

[Guest guest]

Amy, great suggestion in helping " our community " to send Dolores minocin until

her's came.....could have perhaps kept her from going out of remission. I would

like to suggest to any of our community members: If ever in a need like Dolores

had because of ins., etc....let us know and a little from each of us could make

a hugh difference to the one asking! Sally

rheumatic Dolores Re: My diet regime

I just attended a weekend of classes offered by the Organic Growers School in

Asheville, NC (organicgrowersschool.org). One of the presenters said the three

most important things are soil, water, and community.

Dolores, with the network of folks from this site, the community we have

created, I feel we could have rallied and those with Minocin might have offered

to send you a few capsules to keep you in remission until you got your insurance

straightened out. I am on generic...but I would have gladly sent you a

month's supply.

As for " organic " that is a term that requires meeting FDA criteria. If it isn't

grown with chemicals, it is GREAT for you to eat...assuming the land wasn't

fertilized and sprayed previously. Sounds like your backyard produce is ideal!

Someone from this group suggested Aloe Vera gel for stomach issues. 1 tsp. twice

a day. I bought a large bottle from Vitamin Shoppe for $6. It has a strange

taste...I do believe it is helping me. Stops the burn at night.

Amy

>

>

> Hi Dolores,

> I just got off MP due to stomach problems, have completed PREV-PAK for

h.pylori and take MUMIO on and off.

> what is your stomach problem, diagnosis?

> if you are anemic, your nights are restless? ...bleeding can occur with

stomach ulcers, check b12 and iron.

> hope you feel better,

> Ana

>

>

>

> It's a tough road getting back to where I was. It took 5 years to get

> to remission and three months to fall out. Right now, I am tired all

> the time. And if I eat wrong, my stomach keeps me awake all night. The

> burning wakes me up. and then add sleep apnea to it and I am a mess

> again. Need to get the insurance company to issue me new tubing for the

> CPAP machine. But I have little fight left in me. Trying to hang in

> there is where I am at present. It is good to hear from you again. How

> are things at home. If you want to write to me personally go to my home

> e:mail site..... I just added it up in my head. My mom passed Oct. 21

> and then I ran out of Mino.

[Guest guest]

From: Marzea <petrumarzea@...>

Subject: RE: rheumatic Dolores Re: My diet regime

rheumatic

Date: Saturday, March 12, 2011, 2:46 AM

Hi Dolores,

I just got off MP due to stomach problems, have completed PREV-PAK for h.pylori

and take MUMIO on and off.

what is your stomach problem, diagnosis?

if you are anemic, your nights are restless? ...bleeding can occur with stomach

ulcers, check b12 and iron.

hope you feel better,

Ana

To rheumatic@...

From msirene1971@...

Date:Sun. 13 Mar 2011

Subject: RE: rheumatic Dolores Re: my diet regime

 

I started this journey 6 mo. ago with tapering off pred & minocycline

dxd.POLYMALGIA --8 YRS

also have SLEEP APENEA, on oxygen the CPAP.  I have extra tubing/hoaing/filters 

you are

welcome to them--msirene1971@....  WISH YOU WELL.

IRENE

rheumatic

From: moniquesauve@...

Date: Fri, 11 Mar 2011 17:41:27 -0800

Subject: rheumatic Dolores Re: My diet regime

Sorry to hear it Dolores. Hope you get feeling better very soon.

It's a tough road getting back to where I was. It took 5 years to get

to remission and three months to fall out. Right now, I am tired all

the time. And if I eat wrong, my stomach keeps me awake all night. The

burning wakes me up. and then add sleep apnea to it and I am a mess

again. Need to get the insurance company to issue me new tubing for the

CPAP machine. But I have little fight left in me. Trying to hang in

there is where I am at present. It is good to hear from you again. How

are things at home. If you want to write to me personally go to my home

e:mail site..... I just added it up in my head. My mom passed Oct. 21

and then I ran out of Mino. the kids told me they were coming for

Christmas and I ran around the stores a lot getting everything

ready. At the same time I was settling my mom's estate and feeling out

of sorts about the whole process of death and certainly was worn down

taking care of her during her last

days. So, everything sort of came crashing down. I loved having the

kids, but breathed a sigh of relief when they went. By then I was

exhausted and then my fight began with the Insurance & Pharmaceutical

company and I had to visit three docs and convince them to write letters

for me. Saw 6, but only three wrote, then I had surgery on my eye which

I still can't see out of and in the middle of getting some more

opinions. Waiting on my cousin to give me the name & number of his

opthalmologist and then may fly to NYU Eye Instittute if I need further

surgery. So, I'd say that since Sept or Oct. the stress has been

mounting on me and no wonder I feel so shitty. But I am a fighter and

I'll get back there hopefully by spring or summer and you'll all know

about it as I will be my old self again. Take care and hugs all

around. Dolores

                         

[Guest guest]

Hello Irene.  sorry you had to go off MP.  I did so well with it but i too had

stomach prblems due to the massive antibiotics and the so amany changes. 

However, I held together by taking large doses of Probiotics prior to eating

except for the Mino.  When I took that I drand a huge glass of water or tea

before taking the pill and then kept washing it down with more water or tea.  I

would usually take the mino first thing in the morning and the last thing at

night when I knew my stomach was totally empty.  I also tried drinking aloe

vera during that time.  Didn't really like it but

couldn't take the flavored ones because of the sugar and sugar additives.  I

love lemonade or limeade with my water, so most times I would just squeeze a

little juice into it.  I got through it somehow and went into remission when I

was in stage 3.  I may do a little MP again this summer if I don't go back into

remission.  I lost my remission this fall when I got stressed with my mom's

illness and subsequent death, plus losing my supply of Minocin and had to deal

with the Insurance companies.  Did get my mino back until a couple weeks ago

and my number started going up again.  That is when I knew I was losing my

remission state.  Plus I was achy, cranky and very tired.  I hope to be back

in the swing of thing by summer.  My tummy troubles are all because of

scleroderma.  Nothing else.  Been tested for everything and am not anemic.

Wishing you a quick recovery!

Take care, Dolores & Mike

.. 

From: Marzea <petrumarzea@...>

Subject: RE: rheumatic Dolores Re: My diet regime

rheumatic

Date: Saturday, March 12, 2011, 2:46 AM

Hi Dolores,

I just got off MP due to stomach problems, have completed PREV-PAK for h.pylori

and take MUMIO on and off.

what is your stomach problem, diagnosis?

if you are anemic, your nights are restless? ...bleeding can occur with stomach

ulcers, check b12 and iron.

hope you feel better,

Ana

To rheumatic@...

From msirene1971@...

Date:Sun. 13 Mar 2011

Subject: RE: rheumatic Dolores Re: my diet regime

 

I started this journey 6 mo. ago with tapering off pred & minocycline

dxd.POLYMALGIA --8 YRS

also have SLEEP APENEA, on oxygen the CPAP.  I have extra

tubing/hoaing/filters  you are

welcome to them--msirene1971@....  WISH YOU WELL.

IRENE

rheumatic

From: moniquesauve@...

Date: Fri, 11 Mar 2011 17:41:27 -0800

Subject: rheumatic Dolores Re: My diet regime

Sorry to hear it Dolores. Hope you get feeling better very soon.

It's a tough road getting back to where I was. It took 5 years to get

to remission and three months to fall out. Right now, I am tired all

the time. And if I eat wrong, my stomach keeps me awake all night. The

burning wakes me up. and then add sleep apnea to it and I am a mess

again. Need to get the insurance company to issue me new tubing for the

CPAP machine. But I have little fight left in me. Trying to hang in

there is where I am at present. It is good to hear from you again. How

are things at home. If you want to write to me personally go to my home

e:mail site..... I just added it up in my head. My mom passed Oct. 21

and then I ran out of Mino. the kids told me they were coming for

Christmas and I ran around the stores a lot getting everything

ready. At the same time I was settling my mom's estate and feeling out

of sorts about the whole process of death and certainly was worn down

taking care of her during her last

days. So, everything sort of came crashing down. I loved having the

kids, but breathed a sigh of relief when they went. By then I was

exhausted and then my fight began with the Insurance & Pharmaceutical

company and I had to visit three docs and convince them to write letters

for me. Saw 6, but only three wrote, then I had surgery on my eye which

I still can't see out of and in the middle of getting some more

opinions. Waiting on my cousin to give me the name & number of his

opthalmologist and then may fly to NYU Eye Instittute if I need further

surgery. So, I'd say that since Sept or Oct. the stress has been

mounting on me and no wonder I feel so shitty. But I am a fighter and

I'll get back there hopefully by spring or summer and you'll all know

about it as I will be my old self again. Take care and hugs all

around. Dolores

                         

[Guest guest]

Thank you, You are all so generous!.  I thnk that it was a general build up of

everything going wrong at the same time.  My mom being ill was a big strain,

then she passed, then I changed Insurance because they would not substittute and

the generic made me throw up.  Then christmas and the kids coming,  I was

wearing down trying to do all the cooking and shopping.  Then the fighting with

the Insurance .  i had to get letters from docs.  Saw 6,, only 3 wrote a

letter.  It was a terrible time.  Then once I got the okay, no one in .R.

carried Minocin.  I got so many false stories that they stopped manufacturing

it.  i had to track down Triax who makes the mino.  Their fhrmacy called my

pharmacy and bingo the Mino cme in the next day.  The stress wa the fighting I

had to do to get it and the fact that taking care of mom, I didn't have time to

take care of myself and then had to deal with the whole death issue.  I had

relief, yet sorrow and my

emotions got all mixed up and then kids & grandkids came and I had to divie up

some of grandma's mementos for them. Cook, clean and fixed up gifts.  It was

all just too much.  The problems started in August and piled on & on till I ran

out out fight.  But I now have my minocin and have stopped running from doc to

doc.  Will wait three months and then have my blood tested and hope that I can

reach remission. If not, I will repeat the first two phases of MP.  I think

that by adding azith, I got a boost. I also added the Benicar.  I should be

back in remission by summer again.  I rearranged the house and fixed up mom's

room for us.  The living room is now a work room.  We each have our own work

space, the kids re all in school and some in collage or working  and we are

used to Mom not being around anymore.  I still think about her.  She ws 96 and

very cantankerous.  So,  things re back to peaceful.  I just have to get one

eye back to

normal.  Like a damned fool I let an opthalmologist talk me into doing some

lazer surgery and haven't been able to see clerly out of that eye since. Went

back and this time the doc was disturbed and sent me to a specialist friend of

his and he wanted to do further lazer surgery on both eyes. No way!  I am going

to make an appt with a third surgeon and if I need further surgery or if they

can fix the eye, I will fly to NYU Eye & Ear Institute.  I have a friend who

lives a few blocks from there whom I can stay with.  I called my cousin who is

a lawyer and he said I have a year to sue, But to get all the opinions I can and

find out what happened  and if I am left blind in that eye, I will definitely

sue.  Right now I can barely see the screen.  I have to put it up to 150% to

see what I am writing,  So, I believe all the extra stress along without the

meds is what titled me back off y remission.  If I did it once, I can do it

again.  I am a

fighter.  Now I am taking lots of naps, trying to eat better and relaxing

more.  Plus I am in physical Therapy severa days a week and that helps.  I get

the tens unit, deep heat sonic massage and then a warm oil massage.  i go home

and sleep like a baby for a few hours and feel so good. But I really appreciate

your generosity.  that is a special gift.  Thank you.  Take care everyone. 

Love & Hugs all around.  Hope  and Sommer  & Maz and all the rest in the

hospitls right now get better soon.  Love, Dolores & Mike . 

From: mannasal@... <mannasal@...>

Subject: Re: rheumatic Dolores Re: My diet regime

rheumatic

Date: Sunday, March 13, 2011, 6:32 PM

 

Amy, great suggestion in helping " our community " to send Dolores minocin until

her's came.....could have perhaps kept her from going out of remission. I would

like to suggest to any of our community members: If ever in a need like Dolores

had because of ins., etc....let us know and a little from each of us could make

a hugh difference to the one asking! Sally

rheumatic Dolores Re: My diet regime

I just attended a weekend of classes offered by the Organic Growers School in

Asheville, NC (organicgrowersschool.org). One of the presenters said the three

most important things are soil, water, and community.

Dolores, with the network of folks from this site, the community we have

created, I feel we could have rallied and those with Minocin might have offered

to send you a few capsules to keep you in remission until you got your insurance

straightened out. I am on generic...but I would have gladly sent you a

month's supply.

As for " organic " that is a term that requires meeting FDA criteria. If it isn't

grown with chemicals, it is GREAT for you to eat...assuming the land wasn't

fertilized and sprayed previously. Sounds like your backyard produce is ideal!

Someone from this group suggested Aloe Vera gel for stomach issues. 1 tsp. twice

a day. I bought a large bottle from Vitamin Shoppe for $6. It has a strange

taste...I do believe it is helping me. Stops the burn at night.

Amy

>

>

> Hi Dolores,

> I just got off MP due to stomach problems, have completed PREV-PAK for

h.pylori and take MUMIO on and off.

> what is your stomach problem, diagnosis?

> if you are anemic, your nights are restless? ...bleeding can occur with

stomach ulcers, check b12 and iron.

> hope you feel better,

> Ana

>

>

>

> It's a tough road getting back to where I was. It took 5 years to get

> to remission and three months to fall out. Right now, I am tired all

> the time. And if I eat wrong, my stomach keeps me awake all night. The

> burning wakes me up. and then add sleep apnea to it and I am a mess

> again. Need to get the insurance company to issue me new tubing for the

> CPAP machine. But I have little fight left in me. Trying to hang in

> there is where I am at present. It is good to hear from you again. How

> are things at home. If you want to write to me personally go to my home

> e:mail site..... I just added it up in my head. My mom passed Oct. 21

> and then I ran out of Mino.