Tuesday, January 24, 2017

"You can get anything you want, at alice's restaurant"....well except for sulfite free food, of course

first, i  will give you a list of the names for  the sulfites that are added to foods to keep them fresh and looking gorgeous- ready for their close up, you might say. this is not a complete list, and some foods have naturally occurring sulfites, but i will get to that later. here is a list of some commonly used sulfite preservatives: sulfur dioxide, sodium sulfite, sodium bisulfite, sodium metabisufite, potassium metabisulfite, calcium sulfite, and calcium bisulfite. sulfites have been used since , well forever, to prevent browning, control growth of microorganisms, to act as bleaching agents, as well as being antioxidants. in an article by the university of florida IFAS extension( Grotheer, Marshall and Simonne) sulfites have been used since 1664( yep, that is not a typo), and have been approved for use in the united states since the 1800s.

they are used on fruits and vegetables to prevent yucky browning, on seafood- especially shrimp- where they are used to prevent something called" black spot". they are used in dough as a conditioner. sulfites are also used in certain food starches as a bleaching agent. in wine, sulfites are used to inhibit bacterial growth. there is a double whammy with wine though. grapes, especially while undergoing the fermentation process, produce "naturally occuring sulfites". this is unfortunate- i used to like to have a glass of red wine( supposed to be good for you) every once in a while. also unfortunate, is the use of sulfites in some pharmaceutical medicines to maintain stability and potency. i know of a few medications ( i found out the hard way on these) which i will list. i would also mention here that it is nearly impossible to find out which medications contain sulfite preservatives. i have called companies using my " i am a pharmacist" card, and sometimes found it impossible to get correct information. the medications that I KNOW contain sulfites are: brand name synthroid, advair inhalers, long acting steroid injections ( like you would get at the physician's office for a bad knee), and my all time favorite, the Epi pen. yes, an injection for an allergic,or anaphylactic reaction contains sulfite preservatives. this makes things really interesting for me as well as other people who have not just sulfite sensitivity, but go on to have full blown anaphylaxis after ingesting sulfites. i will also add here that cosmetics, body washes, hair spray, shampoo, moisturizers,etc   contain sulfites for stability and preservative purposes.

in an article on the website " about allergies" by Judy Tidwell, she reports that one person in a hundred are sulfite sensitive. the author also says that anyone can become sulfite sensitive at any time in his/her life and that no one is sure what triggers the sensitivity. in my case, when i was sulfite sensitive, i had much milder symptoms that the anaphylactic reactions that i have now. if a person is sulfite sensitive, that person might have stomach upset, digestive problems, a mild headache,etc. there is no treatment for sulfite allergy, unfortunately. one must just avoid all foods that may contain sulfite preservatives. i have hydroxyzine on hand for the reactions, as well as some sulfite free epinephrine injection for more severe reactions. i might add here that the sulfite free epinephrine is not being made anymore, to my knowledge.  i do not like the idea of injecting myself with sulfites to treat a sulfite allergy, but hopefully i will be able to find some more sulfite free epinephrine injection soon.

it would be a shorter list if i listed the foods that DO NOT contain sulfites. basically, organic foods are safe for the most part. but as i said, grapes naturally produce sulfites, as do onions and garlic. as you can imagine, if i want to be reasonably  sure that i am not going to have a sulfite reaction, i need to cook my own meals. i have not eaten out in a restaurant in over fifteen years.even if i am careful,  it is still not a given that i will not have a reaction. i had three last month. one reaction was after i ate a piece of seafood. the person at the seafood market assured me that the fish had not had any preservatives added, but i did not go by one of my rules: if it is too white, or is something that can spoil easily and looks too good, then it is too good to be sulfite free.

you may be wondering why i am talking about sulfite allergies on a thyroid/breast cancer blog. it took me several tries to finally find an allergy doctor who sucessfully diagnosed my problem. i started going to her in about 2009. at that time, she told me that i was one of the few patients that she saw that had the more severe anaphylactic reaction to sulfites. she also told me that she believed that i had cancer somewhere in my body that was causing my immune system to be overloaded, leading to a more serious reaction to sulfites. in 2010 my thyroid cancer was diagnosed. i do not believe that this was a coincidence. i am not saying that this holds true for everyone with a sulfite allergy- especially those who have the sensitivity, and not full blown anaphylaxis. i just believe that the sulfite allergy damaged my immune system, and had some part to play in me having cancer. i did ask her if by successfully treating my cancer ( surgery and chemotherapy) would reverse my sulfite allergy and she said probably not. once allergy pathways are established, they are with us for the long haul.

there are several take- aways from this blog. first, i wanted to inform others about sulfites and sulfite allergies. someone might be struggling out there with digestive issues, headaches, shortness of breath,etc  after eating  sulfite containing foods( or using sufite containing cosmetics or medications ) and not have a clue as to  what may be causing these problems. avoidance of known sulfite containing foods, etc  is the only safe way to determine if this might be your problem. one allergist who i did not see for long, said that he could give me a "large dose" of a sulfite preservative and "observe what happens ." since no one knows exactly what a lethal dose of a sulfite compound might be, i said no thank you and found another doctor! besides, i know exactly what happens to me after i ingest sulfites, as do my family members.

i do not feel sorry for myself. but it is challenging to travel anywhere for any length of time, as i have to be able to obtain and cook my own food. my husband and family are amazing and very supportive. they eat what i eat. and if we  go out to a restaurant  for a special occasion, i either bring along a little something to eat, or i just sip some tea that i bring with me. i will admit that this was awkward at first. we usually have family dinners at home  anyway, but it does limit my interaction with others to some degree. people have a hard understanding just how limited my diet is. they do not understand that while i would LOVE to have some of their wonderfully prepared food, i would HATE to have an anaphylactic reaction. one of the symptoms of an anaphylactic reaction is the "overwhelming feeling that you are going to die". this must be part of the "fight or flight" mechanism. i was relieved to read about this in an article on allergic reactions. i was also  relieved that it was just not me- that others feel this as well.

so that is sulfites 101 in a nut shell, as the saying goes.  many things happen to our bodies when we have cancer,chemotherapy, treatments, scans,etc. . it is not a "one and done" type deal. we are dealing with anxiety, major changes in our bodies, life style changes, and so much more. at this point, i am dealing with " cancer  survivor"  type issues. i am trying my best to make positive changes in my health care. in the care of me. cancer has been sort of a wake up call. yes, i am important,too and i need to tend to myself, as well as tending to  others.

Monday, January 2, 2017

I do not believe in New Year resolutions,...well, not exactly

every year i read about  or hear people talking about their new year resolutions. i decided a long time ago, that making resolutions really was not for me. perhaps it was the fear of failure on my part? anyway, i do examine the past year's life events, and i try to come up with what i used  to call my goals for the new  year. the term goals sounded too much like resolutions to me, so this year i have decided to make some " lifestyle changes" that will hopefully  benefit me in the coming year. call it what you will, i have decided to try to make permanent lifestyle changes for the coming year(s).

some of these ideas  are simple- things that can be  found in the pages of  any popular magazine. i was reading a post by an expert on alzheimer's disease the other day, and i liked a lot of his top ten things to do to that would be beneficial for good brain health. i am going to incorporate some of the ideas the expert mentioned, along with some of my own. of course, i can not start any list of lifestyle changes without a biggie for me, and one that goes without saying- NO CANCER FOR ME THIS YEAR! hopefully, any other year, as well.

so, here is a list of some of my  "lifestyle changes" for this year, and hopefully, in  the years to come. maybe it will give you some ideas of your own, or some inspiration to try some of these ideas out in ways that suit you.

1. get more exercise. see, i told you that they were simple ideas! every popular magazine out there has an article on this i am sure. my problem is that i was scheduled for a knee replacement last year- a week before my bilateral mastectomies. needless to say, the knee replacement surgery went on the back burner. my knee is getting worse, and exercise is challenging to say the least. i had to stop my beloved zumba classes( after doing them for the past 5 years). of course, i am able to walk. but let's just say that a fairly fast turtle, perhaps even a very fit snail, could beat me in a foot( or whatever) race. i abhor the idea of more surgery at this time. my physical therapist said if i could put it off for about 5 more years, it would be easier for me to recover from the surgery. i think i can not wait that long, unfortunately. and if i do not get some good exercise soon, i just may be able to be a stunt double for Jabba the Hutt.

2. get more sleep. when we are sleeping well  is the only time that our brains are not making amyloid plaques. these fiendish creatures not only affect brain function, but they may also trigger inflammation, and cause the destruction of disabled cells. sounds to me like an episode from the walking dead. good information to have, though.

3. incorporate the "Mediterranean diet". this diet is pretty self explanatory. less red meat ( i do not eat that anyway), more chicken, vegetables, olive oil, and here is a real challenge for me- less refined sugar. i have a sweet tooth that i am going to try to reign in this year. i can not eliminate all sugar from my diet ( i am NOT Gyneth Paltrow), but i do think that i can at least cut down a bit. i plan to do this gradually...........

4. learn something new! learning new skills improves our brain health. while it is a complicated process, suffice it to say that learning something new and practicing it makes our brains more elastic. learning kind of improves our data transmission, you might say. while learning to play a musical instrument is probably the best activity, there are other things that a person can do. several years ago, i took a stained glass course. i made a fairly simple stained glass panel of a flower. i love working with stained glass, and i have located a class that i am planning on taking. i am not putting any pressure on myself to exceed in this; i am going to do  it for my good old brain, and for the enjoyment of working with stained glass. which brings me to bullet point number 5..

5. try to reduce stress. i use the word " try", because some stress is good for us. remember the tiger in the jungle? flight or fight? we just do not need to go overboard on the stress thing. too much stress makes our bodies susceptible   to inflammation, which can cause infection, stress has also been linked to cancer. i have some anxiety related stress wondering if "the big C" will be paying me another visit. scans and checkups are difficult, so i need to get more of a handle on this. which leads me to number 6 on my countdown.....

6. practice meditation or mindful thinking. some people achieve peace when they pray, and that is good of course. i think that a somewhat structured or guided meditation plan would also  be very helpful. i have not worked out all of the details on this as yet. i do know that being out in nature, which is easy to do where i live- provided the weather is good, is very beneficial to my mental health. i feel at peace and less stressed when i am outside and aware of my surroundings. some people just trudge on ( and i have been guilty of this, plenty of times) and forget to look up at the sky. notice beautiful bird song. touch the water in a stream. before i get too carried away, i will just say that we are all creatures of the universe and need to appreciate the world around us.

7. take my vitamins. i have read that vitamin B-12 is very beneficial to good brain health. do i sound too much like the scarecrow from the wizard of oz or what? i have a brain, i just want to keep it working as well as possible.

there you have it. or most of it, anyway. my ideal lifestyle changes. this year,  if i can do even a small part of these things, i will be better off than i was last year. and that is the idea, isn't it?