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Re: Barbara/coconut oil

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Mayleen, I'm going to try the cocount, and next trip to Whole Foods

I'll see what else they have available. I love walking into that

store, it always smells soooo good!

Hugs!

Babs in Texas

> > > >

> > > > Hi All,

> > > >

> > > > Sorry I haven't posted in a few days again, but I am back from

> > > > Birmingham. Still don't know anything definite other than the

> > > > diagnosis I already have of UIP. First when I got there, they did

> > > > ABGs (OMG!! It hurt so bad!! I had it done once before and I

didn't

> > > > even feel it, but not this time. She had to pry (her words)). Then

> > > > I had to do PFTs, which showed 57% lung function, compared to the

> > 68%

> > > > I had in December. Next, I visited with the doc. Actually there

> > > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was

> > > > the Assistant Professor). His name was Dr. , very nice guy.

> > > > He took down all my history and said he thinks I may have

pulmonary

> > > > hypertension (which would explain the rapid heart rate).. He

did exam

> > > > and then goes to discuss with Dr. de Andrade, who comes back

in and

> > > > again, very nice guy. He explains that it is very rare in a woman

> > > > under the age of 50 to have pulmonary fibrosis and since I

have been

> > > > sick for 6 years already, even more rare, not unheard of, just

rare.

> > > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,

> > > > he thinks there is an underlying disease causing the PF, so I get

> > > > blood work (10 tubes of blood) for various autoimmune diseases. He

> > > > is leaning towards Sjogren's or scleroderma (mostly

scleroderma for

> > > > which also there is no cure). Dr.. did a heart exam and

> looked

> > > > at the veins in my neck before talking to Dr.. de Andrade who

decided

> > > > I needed another chest CT (my last one was in February 2008), so I

> > > > had that done (without contrast thank God!!) and also that I

needed

> > > > an ultrasound of my heart to check for blood flow to the heart and

> > > > for any blockages to the valves. All in all, he said if I

don't hear

> > > > from them in a week, to call them to get the results. Other than

> > > > that, he didn't change any of my medications, except to

decrease the

> > > > prednisone even further to 10 mg a day. He said he wants me to get

> > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I

> > > > told him I had gained 20 pounds since being on them starting in

> > > > January, and told him I have moon faces and he agreed.. He

said they

> > > > want me lean and healthy and I did not need to be on that for

sure.

> > > > Any weight gain is out of the question, he said. He told me I have

> > > > to keep moving. He told me to eat lean proteins, fruits, and

veggies

> > > > and no snacks. He PROMISED me the weight will come off. He said he

> > > > expects me to lose 10 pounds rather quickly. I sure hope he is

> > > > right, because I am miserable and I told him so, too!! He said

there

> > > > are no real medications to treat PF, and I knew that, but he said

> > > > when I come back, I can decide either to go with the Imuran and N-

> > > > Acetyl-Cysteine (NAC), which is all the best they know at this

point

> > > > to give patients with PF, or I can try an experimental drug

> > (clinical

> > > > trial), which I don't know what the side effects will be, but I am

> > > > kinda leaning towards doing anyway, because I feel like even if it

> > > > doesn't help me, it may help some other person with this stupid

> > > > disease on down the road and it would be worth it. As for lung

> > > > transplant, I don't yet qualify because my sats are not low enough

> > > > and I am not on oxygen yet. Note that I said " YET. " He said

the key

> > > > to prolonging oxygen use as long as possible is to stay as active

> > and

> > > > healthy as possible and that is what I am going to try and do.

> > > > (my grandson) is here with me this summer, and he really

> > > > helps to keep me motivated and I think I need that right now. Also

> > > > the docs were really glad to know that I am in pulmonary rehab and

> > > > that I am going to stay in the Wellness Program when I get

done with

> > > > the rehab program. All in all, even though I did get some not so

> > > > good news, I feel like I got some good news, also, so until next

> > week

> > > > or whenever I get the results, I am just trying to keep my self in

> > > > exercise and health mode the best I can and keep going.

> > > >

> > > > So that was my Birmingham visit. My parents went with me and we

> > > > really had a nice trip. I don't know what I would do without them.

> > > > They have been my rock through all of this. Thank God for my Mama

> > > > and Daddy!!

> > > >

> > > > I hope you all have a great week and now that I am back I hope

to be

> > > > able to keep up with posts better and write more than I have

been. I

> > > > do reads all the posts and think of each and every one of you

> > > > everyday. You are my air family and you are my rock, as well.

Don't

> > > > know what I would do without you guys, either!! I love you all!!

> > > >

> > > > Have a great day!!

> > > >

> > > > Caro

> > > >

> > >

> >

>

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Barbara, Hi, Whole Foods is about the only place I breathe OK in. I was talking to one of the employees and he told me they do not let them use any fragrance products to work there. No fabric softeners or anything. I thought no wonder I breathe better here. Although I prefer less busy hours, you cannot stop people from coming in. At least I am less restricted there then other places. I still read labels even there. Cannot afford not to. It is a lot of work however, it avoids me getting seriously ill. Good to hear you are trying the coconut oil. Remember oils that are edible when are always higher quality than those in the beauty section, so you can eat it and wear it. In the beauty section they are allowed to add a carrier oil which would make your skin oil not completely coconut. That is because cosmetics are not regulated so an educated consumer is always the best

route.

Let me know how it works for you !!

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

< Click on me !!

Re: Barbara/coconut oil

Mayleen, I'm going to try the cocount, and next trip to Whole FoodsI'll see what else they have available. I love walking into thatstore, it always smells soooo good!Hugs!Babs in Texas> > > >> > > > Hi All,> > > >> > > > Sorry I haven't posted in a few days again, but I am back from> > > > Birmingham. Still don't know anything definite other than the> > > > diagnosis I already have of UIP. First when I got there, they did> > > > ABGs (OMG!! It hurt so bad!! I had it done once before and Ididn't> > > > even feel it, but not this time. She had to pry (her words)). Then>

> > > I had to do PFTs, which showed 57% lung function, compared to the> > 68%> > > > I had in December. Next, I visited with the doc. Actually there> > > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > > > the Assistant Professor). His name was Dr. , very nice guy.> > > > He took down all my history and said he thinks I may havepulmonary> > > > hypertension (which would explain the rapid heart rate).. Hedid exam> > > > and then goes to discuss with Dr. de Andrade, who comes backin and> > > > again, very nice guy. He explains that it is very rare in a woman> > > > under the age of 50 to have pulmonary fibrosis and since Ihave been> > > > sick for 6 years already, even more rare, not unheard of, justrare.> > > > So I am a model

case!! Anyhoo, due to this fact that I AM so rare,> > > > he thinks there is an underlying disease causing the PF, so I get> > > > blood work (10 tubes of blood) for various autoimmune diseases. He> > > > is leaning towards Sjogren's or scleroderma (mostlyscleroderma for> > > > which also there is no cure). Dr.. did a heart exam and> looked> > > > at the veins in my neck before talking to Dr.. de Andrade whodecided> > > > I needed another chest CT (my last one was in February 2008), so I> > > > had that done (without contrast thank God!!) and also that Ineeded> > > > an ultrasound of my heart to check for blood flow to the heart and> > > > for any blockages to the valves. All in all, he said if Idon't hear> > > > from them in a week, to call them to get the results.

Other than> > > > that, he didn't change any of my medications, except todecrease the> > > > prednisone even further to 10 mg a day. He said he wants me to get> > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > > > told him I had gained 20 pounds since being on them starting in> > > > January, and told him I have moon faces and he agreed.. Hesaid they> > > > want me lean and healthy and I did not need to be on that forsure.> > > > Any weight gain is out of the question, he said. He told me I have> > > > to keep moving. He told me to eat lean proteins, fruits, andveggies> > > > and no snacks. He PROMISED me the weight will come off. He said he> > > > expects me to lose 10 pounds rather quickly. I sure hope he is> > > > right, because I am

miserable and I told him so, too!! He saidthere> > > > are no real medications to treat PF, and I knew that, but he said> > > > when I come back, I can decide either to go with the Imuran and N-> > > > Acetyl-Cysteine (NAC), which is all the best they know at thispoint> > > > to give patients with PF, or I can try an experimental drug> > (clinical> > > > trial), which I don't know what the side effects will be, but I am> > > > kinda leaning towards doing anyway, because I feel like even if it> > > > doesn't help me, it may help some other person with this stupid> > > > disease on down the road and it would be worth it. As for lung> > > > transplant, I don't yet qualify because my sats are not low enough> > > > and I am not on oxygen yet. Note that I said "YET." He saidthe

key> > > > to prolonging oxygen use as long as possible is to stay as active> > and> > > > healthy as possible and that is what I am going to try and do.> > > > (my grandson) is here with me this summer, and he really> > > > helps to keep me motivated and I think I need that right now. Also> > > > the docs were really glad to know that I am in pulmonary rehab and> > > > that I am going to stay in the Wellness Program when I getdone with> > > > the rehab program. All in all, even though I did get some not so> > > > good news, I feel like I got some good news, also, so until next> > week> > > > or whenever I get the results, I am just trying to keep my self in> > > > exercise and health mode the best I can and keep going.> > > >> > > >

So that was my Birmingham visit. My parents went with me and we> > > > really had a nice trip. I don't know what I would do without them.> > > > They have been my rock through all of this. Thank God for my Mama> > > > and Daddy!!> > > >> > > > I hope you all have a great week and now that I am back I hopeto be> > > > able to keep up with posts better and write more than I havebeen. I> > > > do reads all the posts and think of each and every one of you> > > > everyday. You are my air family and you are my rock, as well.Don't> > > > know what I would do without you guys, either!! I love you all!!> > > >> > > > Have a great day!!> > > >> > > > Caro> > > >> > >>

>>

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Guest guest

Hi Mayleen! I didn't know that info about Whole Foods, but it makes

perfect sense.

I really like the smells of the coffee, and the area where they have

all the nuts, and Chaz loves the deli area. We haven't been in a long

while as it's in downtown Austin but we discussed it last night and he

wants to go back soon. It becomes an all day excursion for us. We

browse, buy lunch and eat it outside with the traffic and birds all

around, and then back into the store to shop. I always hit the nut

aisle (no wisecracks from anybody, ok? I KNOW I'm loopy and so do YOU)

and then it's usually a stop or two on the way home. So the whole

affair can take hours, leaving me exhausted. But NO WAY am I staying

home when he says " let's go " . LOL!

We did some electrical work once for a woman who gave us a whole list

of no-no's before entering her home. No deoderents, perfume, powders,

etc., and no sprays or items that we use in electrical like gorilla

glue..things like that. She was highly allergic to the world and lived

a very insulated life.

I have some scent issues myself but not nearly as serious as yours. My

daughter can't have scented candles (they have to be made organically)

as she instantly gets a headache.

I think we're all allergic to this planet. hee hee.

I appreciate all of your tips. Did I tell you the coconut cake I made

with the coconut oil was a HUGE hit with the entire family? They loved

it!!!

Hugs to you!

Babs in Texas

> > > > >

> > > > > Hi All,

> > > > >

> > > > > Sorry I haven't posted in a few days again, but I am back from

> > > > > Birmingham. Still don't know anything definite other than the

> > > > > diagnosis I already have of UIP. First when I got there,

they did

> > > > > ABGs (OMG!! It hurt so bad!! I had it done once before and I

> didn't

> > > > > even feel it, but not this time. She had to pry (her

words)). Then

> > > > > I had to do PFTs, which showed 57% lung function, compared

to the

> > > 68%

> > > > > I had in December. Next, I visited with the doc. Actually there

> > > > > were 2 docs. The first one was a fellow of Dr. de Andrade

(who was

> > > > > the Assistant Professor). His name was Dr. , very nice

guy.

> > > > > He took down all my history and said he thinks I may have

> pulmonary

> > > > > hypertension (which would explain the rapid heart rate)... He

> did exam

> > > > > and then goes to discuss with Dr. de Andrade, who comes back

> in and

> > > > > again, very nice guy. He explains that it is very rare in a

woman

> > > > > under the age of 50 to have pulmonary fibrosis and since I

> have been

> > > > > sick for 6 years already, even more rare, not unheard of, just

> rare.

> > > > > So I am a model case!! Anyhoo, due to this fact that I AM so

rare,

> > > > > he thinks there is an underlying disease causing the PF, so

I get

> > > > > blood work (10 tubes of blood) for various autoimmune

diseases. He

> > > > > is leaning towards Sjogren's or scleroderma (mostly

> scleroderma for

> > > > > which also there is no cure). Dr.. did a heart exam and

> > looked

> > > > > at the veins in my neck before talking to Dr.. de Andrade who

> decided

> > > > > I needed another chest CT (my last one was in February

2008), so I

> > > > > had that done (without contrast thank God!!) and also that I

> needed

> > > > > an ultrasound of my heart to check for blood flow to the

heart and

> > > > > for any blockages to the valves. All in all, he said if I

> don't hear

> > > > > from them in a week, to call them to get the results. Other than

> > > > > that, he didn't change any of my medications, except to

> decrease the

> > > > > prednisone even further to 10 mg a day. He said he wants me

to get

> > > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I

> > > > > told him I had gained 20 pounds since being on them starting in

> > > > > January, and told him I have moon faces and he agreed.. He

> said they

> > > > > want me lean and healthy and I did not need to be on that for

> sure.

> > > > > Any weight gain is out of the question, he said.. He told me

I have

> > > > > to keep moving. He told me to eat lean proteins, fruits, and

> veggies

> > > > > and no snacks. He PROMISED me the weight will come off. He

said he

> > > > > expects me to lose 10 pounds rather quickly. I sure hope he is

> > > > > right, because I am miserable and I told him so, too!! He said

> there

> > > > > are no real medications to treat PF, and I knew that, but he

said

> > > > > when I come back, I can decide either to go with the Imuran

and N-

> > > > > Acetyl-Cysteine (NAC), which is all the best they know at this

> point

> > > > > to give patients with PF, or I can try an experimental drug

> > > (clinical

> > > > > trial), which I don't know what the side effects will be,

but I am

> > > > > kinda leaning towards doing anyway, because I feel like even

if it

> > > > > doesn't help me, it may help some other person with this stupid

> > > > > disease on down the road and it would be worth it. As for lung

> > > > > transplant, I don't yet qualify because my sats are not low

enough

> > > > > and I am not on oxygen yet. Note that I said " YET. " He said

> the key

> > > > > to prolonging oxygen use as long as possible is to stay as

active

> > > and

> > > > > healthy as possible and that is what I am going to try and do.

> > > > > (my grandson) is here with me this summer, and he really

> > > > > helps to keep me motivated and I think I need that right

now. Also

> > > > > the docs were really glad to know that I am in pulmonary

rehab and

> > > > > that I am going to stay in the Wellness Program when I get

> done with

> > > > > the rehab program. All in all, even though I did get some not so

> > > > > good news, I feel like I got some good news, also, so until next

> > > week

> > > > > or whenever I get the results, I am just trying to keep my

self in

> > > > > exercise and health mode the best I can and keep going.

> > > > >

> > > > > So that was my Birmingham visit. My parents went with me and we

> > > > > really had a nice trip. I don't know what I would do without

them.

> > > > > They have been my rock through all of this. Thank God for my

Mama

> > > > > and Daddy!!

> > > > >

> > > > > I hope you all have a great week and now that I am back I hope

> to be

> > > > > able to keep up with posts better and write more than I have

> been. I

> > > > > do reads all the posts and think of each and every one of you

> > > > > everyday. You are my air family and you are my rock, as well.

> Don't

> > > > > know what I would do without you guys, either!! I love you all!!

> > > > >

> > > > > Have a great day!!

> > > > >

> > > > > Caro

> > > > >

> > > >

> > >

> >

>

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