Re: Re: Barbara

[Guest guest]

Hi Barbara, Just read this post after I sent the last one. Wish I had seen this one before. Anywho, Whole Foods does a lot right, however they still need some improving. It is an all day affair for us as well. I make organic happen on EBT which is hard as heck. Then I have to scrutinize everything. It is still the best place for us to go. We combine it with a trip to the VA for 's meds, once a month. Local organic is much better. The ones that come from over seas, the law says they must be sprayed with stuff for pests and other contaminants so their goes the organic. I read the fruit labels see where they are from. If US then I buy. It is a job. I have to take breaks in between.

The lady you describe sounds like me, if so it is not an allergy but a poisoning. What happens is your immune system becomes damaged so much that it losses it's ability to eliminate toxins. Any toxins natural occurring or man made. Then we start storing these in our organs until organ failure occurs. The best treatment is avoidance which is why we become so horribly isolated. The next is trying to rid you body by methods of detoxification from the toxins you are storing. The difficulty is no one is the same and it attacks numerous organs. Makes it difficult to actually do anything but experiment with methods until you find something that helps you. The problem is that by the time you find out you have this, the damage has been done. There starts your life on the run from everything and everyone just to stay alive.

They sometimes refer to it as Allergic to the 21 Century, however it is not an allergy. They also call it Chemical Aides.

If you have scent issues like me, that is where this begins. I can send you a brochure with a brief explanation if you wish. Please take care to avoid these. You do not want to be where I am. Briefly let me say that scents even if natural have VOC's like in essential oils which can still be damaging because they upset your intestinal tract where your immune system is. If you would like more info on this I can give you some. I too get brain fog.

Here is an article: Very Interesting which tells of others living with this. Most of us become homeless. My job when this situation changes is to address the homelessness issue.

http://www.beyondpesticides.org/infoservices/pesticidesandyou/Winter%2098-99/The%20Dispossessed%20(Book%20Review).pdf

Please read this story, it is a clear picture of what happens:

http://www.alerg.com/kimpalmerstory.html

God Bless !!

dragonflymcs

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

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Re: Barbara/coconut oil

Hi Mayleen! I didn't know that info about Whole Foods, but it makesperfect sense.I really like the smells of the coffee, and the area where they haveall the nuts, and Chaz loves the deli area. We haven't been in a longwhile as it's in downtown Austin but we discussed it last night and hewants to go back soon. It becomes an all day excursion for us. Webrowse, buy lunch and eat it outside with the traffic and birds allaround, and then back into the store to shop. I always hit the nutaisle (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 wholeaffair can take hours, leaving me exhausted. But NO WAY am I stayinghome when he says "let's go". LOL!We did some electrical work once for a woman who gave us a whole listof no-no's before entering her home. No deoderents, perfume, powders,etc., and no sprays or items that we use in

electrical like gorillaglue..things like that. She was highly allergic to the world and liveda very insulated life.I have some scent issues myself but not nearly as serious as yours. Mydaughter 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 madewith the coconut oil was a HUGE hit with the entire family? They lovedit!!!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 (herwords)). Then> > > > > I had to do PFTs, which showed 57% lung function, comparedto 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 niceguy.> > > > > 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 awoman> > > > > 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 sorare,> > > > > he thinks there is an underlying disease causing the PF, soI get> > > > > blood

work (10 tubes of blood) for various autoimmunediseases. 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 February2008), 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 theheart 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 meto 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 meI 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. Hesaid 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 hesaid> > > > > when I come back, I can decide either to go with the Imuranand 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 evenif 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 lowenough> > > > >

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 asactive> > > 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 rightnow. Also> > > > > the docs were really glad to know that I am in pulmonaryrehab 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 myself 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 withoutthem.> > > > > They have been my rock through all of this. Thank God for myMama> > > > > 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> > > > >> > > >> > >> >>