13
Oct
10

Raise the towel or throw in the towel?


…and now here I sit with no sense of humor.

It’s a dark place, the land of “nothing is funny.”

Most people don’t like it when I visit this ridiculous world of doom because I am not entertaining.  So the people who want nothing to do with any Heather except funny Heather, please move along, as there is nothing to see here.

This post is for me and for the people who feel completely helpless with this allergy i.e. feel like no one can help us.

Today, I am glad I can use my hands and type.  I couldn’t move either one of them since Sunday, so this is a nice change.  I was able to henpeck a few things here and there, but mostly, I could hardly make Alpha and Cracker’s school lunches, go to the bathroom, put my hair in a ponytail, brush my teeth, put the straw in a Capri Sun for Bambi, drive my car, sign my name on the ambulance release form…YUP.  YUP, YUP.

Ya heard me.  Ambulance release form.

Because I made a fool of myself swooning and dropping to the floor of my local library.  Here I am, limping from swollen feet, one hand immobile and wrapped, the other swollen like a blow-fish trying to hold a newly released novel… and I drop. It’s a long story and I don’t feel like telling it again.  Let’s just say that they blamed it on my allergy that no one seems to not be able to tell me anything about and gave me instructions to follow up with my doctor.

I am like, done.  Every other day I think I can do this.  I feel empowered, that I am going to be able to deal with this.  This nut I can crack.  I can’t EAT it, for the love of God, but I can try to crack it.  I can figure out things that I can eat and I can trust that a label is telling me the truth and I can find a few moments in my day when I am not taking care of the entire free WORLD but myself, but I am failing.  I am bad at it.  I am defeated.

FRICKEN’ CRY BABY.

I have wads of kleenex around my keyboard because I was just blubbering like a baby to try to call Chicagoland allergy doctor’s offices to see if they know anything about a sulfite allergy.  The problem is that I just can’t seem to get past the uncaring, bitchy, rude and uninterested, crass, annoyed and unfeeling people that answer the phone.   I don’t need to here one more person making me feel like shit.  I want no more long pauses after I state my case and then a very unexcited, “hold please.”  (And I KNOW they are doing this)

Annoyed, "WTF are you talking about and you are bothering me" eye-roll.

"What the hell is a sulfite."

I get that no one knows what this is.  I understand that I need to breathe and smile at every eye-rolling waitress when I divulge my true food allergy doesn’t contain the words “gluten” or “peanut.” I understand that no one has heard of this or doesn’t know what the hell it is.  I GET IT.  But, unfortunately, I am LIVING it and if people think it’s a hard pill to swallow, imagine me actually having to swallow the pill every day.

I call allergists offices to see if I can possibly find someone with a heart to inquire with a doctor if they have ever heard of a sulfite allergy.  Is it something that they can treat?   Do they know of someone that might know someone that might have any kind of clue as to what this is?  Because I can say, with all the determination that I can muster, this is ruining my life.  Can they help me with that?  Anyone?   Anyone?

KNOCK IT OFF

I will now leap off this pity party of a soap box.  I have a lot of blogging to catch up on.  I will remove my sense of humor hat that is crushed under my shoe and put it back on.  I will try to regain my vigilance in helping myself and others through this horrible disability that we have to live with and so that we can move on.

But I have to put my mark out in the world for all 4 people who will read this and say that I know what it’s like to not be heard, to have no one to listen to you and to not be understood.  Life is swirling around all of us with everyone living theirs so I guess the best thing we can do is hug ourselves and try to protect ourselves the best we can.

This is a society that doesn’t know the dangers of sulfites or what they are probably doing to them and their children.  I mean Jimminy Crickets, do you know how annoying it is to type the word sulfite all day and spell checker has to point out that it doesn’t even know what the hell it is?  My screen is constantly aglow with squiggly angry red lines!

OK, so back to work.  We have holiday parties coming up that we need to chat about and prepare for and more food options and recipes to find.  We need some serious “turn-this-frown-upside-down” action around here STAT.  So let me end this post on a high note with a food allergy joke.  I am giving credit to another blogger that I lifted this from because I thought it was cute and I like that they were trying to find some humor from the insanity so here is her link

Q) Did you hear about the Frenchman who could only count to seven?
A) He had a huit allergy.

Onward and upward.

XO

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13 Responses to “Raise the towel or throw in the towel?”


  1. 1 Amanda
    October 13, 2010 at 6:47 pm

    Hi, I’m really sorry you’re having a rough time with it right now. I have a sulfite sensitivity but not to the same degree you have, but still I get very frustrated with it.

    I apologize for the quick note (I’m at work), or if you’ve already covered these topics in your blog, but these supplements may offer help. I have not had a chance to thoroughly research yet, but some websites suggest these could help. I really don’t know. But you sound so frustrated I wanted to drop you a note.

    Molybdenum (this is necessary for the body to convert sulfites)
    Vitamin D
    Folic Acid
    B12

    I’ll elaborate more if anyone is interested. Again, I don’t know if these will help, as I haven’t had a chance yet to really look into them.

    Good luck and take care,

    Amanda

  2. 2 Abbie
    October 13, 2010 at 7:41 pm

    Sorry to hear that things have been rough! I know how you feel… I occasionally (ok so often might be more honest) have days where I just feel like I need to drop out of society and start my own commune where I grow my own food – all of it, including the meat! When I figure out how to do that I will let you know and you can move into it with me. I have even considered moving to Canada – at least they consider sulfites to be one of the major allergens! Our food system in the US is so screwed up. There are days when I feel like the FDA is more interested in protecting big business than consumers. Until I figure all of that out, all I can say is hang in there and that I am sending you hugs and warm thoughts. Please don’t hesitate to e-mail me if you think I can offer any suggestions, advice, or recipes…
    Best wishes and please keep up the blogging – it is nice to know I am not the only one frustrated with a freaky allergy/intolerance that no one has heard of!
    -Abbie

    • October 13, 2010 at 7:54 pm

      Abbie…Thanks for peeking in. What a sweet note and I know you understand. I am doing a cooking challenge starting tomorrow and I am hoping to add some new ideas for us for the holidays.
      I am sure that there are some days that I am going to need to run away to our little Canadian farm, so let’s keep that vision alive LOL
      XO
      Heatherhttps://winenot69.wordpress.com/wp-admin/edit-comments.php?p=299#comments-form

  3. 4 Terri Chandler
    October 13, 2010 at 8:12 pm

    Hi Abby and Heather,
    I too feel the pain, I have only been dealing with this for about 4 months and some days I wanna crawl in a hole and die. I get so fed up. My daughter is getting married in two weeks and I am in charge of all the food. Not a good thing when you can’t even taste it! I have to rely on others to make sure it tastes ok. It’s really sad when my daughter wants me to taste her wedding cake and I have already told her “NO WAY” She understands but is that not what a mother is for?? I would also like to join your farm in Canada and maybe we can come up with some really good stuff that is good for us and others too.
    Hang in there girls, I so look forward to new posts and what everyone has to share, and my frustration is just as high as yours. Have a better day! Terri

    • October 13, 2010 at 8:20 pm

      Terri…welcome! Oh no! That is so horrible! I can’t imagine not being able to sample the cake….if you don’t mind me asking, what are your symptoms, how long have you been sick? I think I am going to make a post for everyone to share their stories…I think it’s important to find out how this effects people….Get your Canadians papers ready and make sure to stick around here…there is going to be a pretty ridiculous cooking challenge starting and I think it will be incredibly scary and interesting…XO

  4. 6 Tracy
    October 13, 2010 at 8:42 pm

    Yeah. You said it.

    HOWEVER (aw – you knew I couldn’t leave it at that, didn’tcha???)

    First and foremost – your sense of doom has overwhelmed your sense of humor. This is the most insidious symptom as far as I am concerned. Your mood, that sense of helplessness and despair are directly caused by the chemicals running around in your body. You will feel less overwhelmed when your body rids itself of some of this crap, and then you will say – jeez, how did I feel so goddamn LOW? It isn’t as bad as all THAT. I know it doesn’t feel like it now, I know the feelings seem totally justified, but as this starts to clear, you will think – yep – that wasn’t me inside this brain. I hate this part of it the most because when I am having a reaction I think I am thinking normally and I CANNOT tell and I WILL NOT admit that my sense of despair is part of the reaction. And NO ONE who doesn’t have this can understand the complete takeover of your brain with this emotion. So – try to weather the storm – good times are coming back soon. Just lay low and pamper yourself till you get your brain back. And try not to pick a fight with anyone – you are looking at the world through shit colored glasses right now so lay low.

    Second – It is my belief that sulfites will skyrocket to attention within the next five years. Ten years ago, no one had ever heard of gluten – now you can get gluten free pasta in italian places and gluten free pizza dough – there is a totally gluten free bakery by my house. Why? Because somewhere along the way someone thought “here is a niche market that I can MAKE MONEY ON. Those fuckers will pay out the nose for something that doesn’t taste like cardboard.” And our day is coming, cause I would sacrifice my first born to be able to go to a restaurant and eat a meal. With flavor and shit. I would pay and pay for that privilege, yes I would.

    Third – I know you are going to hate to hear this, but I think you are being a little too adventurous with your food. I might be reading into things here because this is exactly what I did, but I think you are introducing too many things too quickly. Then when you have a reaction it is too hard to pinpoint the source. I know it sucks, but I had to go back on the elimination diet after about 8 months into my journey and start from scratch. And I am still figuring it out. Things change – about two months ago I was having daily reactions and I could not figure out what was happening. Turns out I had gotten lazy and started drinking the water at work, where the whole building is on a filtering system. Which was fine – until they changed the filter and there were brand spankly new sulfites being released into the water. BUT – I would have NEVER figured this out if I was not 100% rock solid on EVERYTHING else I was eating.

    Fourth – remember you can’t totally avoid sulfites. You will get some. Hell, your body produces some. You are processing some – the difference is – you are missing the enzyme needed to process sulfites, so what is turned safely into sulfates in other people’s bodies are not in yours and so that shit runs rampant through you. ANYONE would have these symptoms if as much sulfites were released into their body and not neutralized. The shit is poison. To everyone. Your body is just smarter than everyone elses and you are rejecting this toxic crap. The real problem here is with our food system and that this chemical does not even need to be listed as and INGREDIENT if it is part of the “process” used in getting the stuff we eat to have a half life of ten thousand years. And you are dead right – this stuff is very bad for us – its basic nature is to prevent oxygenation. Google sulfites and oxygenation together and you know what you will find? You will find lots of technical information related to our water system. Why? Because sulfites are added to the water system to prevent the water from rusting the insides of the pipes as it comes to our homes. Metal needs oxygen to rust and sulfites stop that – sulfites stop LIFE.

    Fifth – I am switching to all organic. It sucks, but honestly I reacted to GMO crap, so fuck it – I mentioned I will pay and pay not to feel this way, right?

    Sixth – This is likely not an allergy. The allergist CANNOT HELP YOU. You most likely have a sensitivity – which has the same symptoms as an allergy but isn’t treatable except by total avoidance. Fun times, right? There are, however, ways to deal with the symptoms a little better. Do you do acupuncture? Would you consider going to my guy? I have been seeing him for a year and a half and he now knows a LOT about sulfites. He has me on chinese herbs to keep my symptoms at bay and believe me when I tell you that he has stopped a reaction IN ITS TRACKS on more than one occasion. Yup. Totally. Stopped. Within 20 minutes. I went to a different acupuncturist before him and she could not do that. He used to be the dean of the Chicago Acupuncture Institute and has taught many of the local acupuncturists. Please go see him. Seriously – he saved my life. In the real way, not the emotional way, I really believe that. But in any case, lose the allergists – I paid $3000 for ALL the testing for her to tell me that there was no standard for testing sulfites, so she couldn’t diagnose me if that was what I had. AFTER I told her at the outset that was what I was allergic to and needed to be tested for that.

    penultimately – I have read every persons account I can get ahold of that has this. I read the sulfitesnomore stuff religiously. I have heard the miracle stories about molybdenum, vit B, etc. I think these things probably help, but honestly, I cannot find any supplements that I do not believe have sulfites in them. nope – not one. BUT – what I have gathered from all this reading is that every single person who has this AND HAS GOTTEN BETTER have one thing in common. They spent 2 – 5 years in total avoidance. I think your body recovers some over time, I really do. So – I think if you can avoid this for long enough, your tolerance will increase. And don’t laugh about moving to a hippie commune and living off the land. I am seriously considering it. No, really – one in North Carolina. I just don’t believe I can be healthy here anymore.

    AND finally – call me. I think you need to look at your overall strategy, every behavior every day. I think one day you will get back to living fairly normally – meeting friends for drinks and dinner, travelling, etc (of course I HAVE to believe that, right?) However – that day ain’t today, sister! No, it isn’t. Today you have to do things different. And believe me – I am doing things different – including some things I haven’t even told you about because they are pretty woo woo. But you know what? I am better than I was. My reactions are about 20% of what they used to be when I have them now. 20%, no lie. So I will do the wacky stuff because I am feeling so strong and so good. And you can, too – and you will. I promise.

  5. October 14, 2010 at 2:40 am

    First of all, I love you.

    I know that this sense of doom is a problem. I actually get woken up by it from a cold sleep about 30 minutes before my joints start to swell. I lie in bed and I FEEL it coming on, it’s so crazy. Now I know what it is and the little catholic girl that I am, I feel better just lying there praying. (And meditating. What a bad catholic girl. Whatever it takes.) SO yeah, I totally get that. I think Thor is getting the brunt of it and I don’t think he is really thrilled about that little symptom. “It’s like, WEEE! Let’s throw some PMS in the mix and call you Heather from Hell!” Poor fella.

    The good news is blogging about it today already got me OUT of it, so dayum, my plan is working. (Insert evil mad doctor laugh here.)

    Second – I am so with you. ATTENTION ATKINS/GLUTEN-FREE FAD STARTERS: GET TO WORK.
    Bring on the sulfite free menu. Cause I am about to bitch slap one more server who gives me “The Look” when I am ordering.

    Third. I know. I know.I know.I know.I know.I know.I know.
    But I am HUNGRY. AND BORED. (BIG WHINE) And I want a burrito and a margarita. (HUGE POUT.)
    I know I am trying to much and I know I am sabotaging my efforts to pick out the culprits.
    I need to stay in a dtraight line for longer amounts of time to add slowly and pick out the demons. But your kick in the ass is just the remedy I needed to remember that. I am going to try some new things because I need to get through the holidays.
    I still don’t have anything I eat for breakfast but a piece of breadsmith french bread toast with some peanut butter. I don’t have a ton of money to get all the fresh fruits for smoothies. One of the challenge items is going to be porridge. Wish me luck, baby bear. That is insane about the water at your work. It’s like, too much to even think about that it could be the filter on my fridge. My brain is fried.

    Four – OMG. Wait. (smells smoke) Yeah. Now my brain is really fried.

    Fifth – I really am trying to slowly move baby steps to organic. Thor is right. It’s too expensive. But I need to do it. What do we do? Need sulfite-free money tree.

    Sis – again, money. I cannot afford shoes for my kids, much less an out of pocket acupuncture visit. I would love to try it one day and I am open to things, but we are living bare bones right now. I also live in The farthest suburb of the North Pole, I mean Wauconda, so I am not close to anything. Yeah, I think I am done with the allergist concept. I just don’t think they can help me. I have been diagnosed by the great Dr. Mike and that is about all I can expect to get from anyone else for now. I think we are on our own. I still think that sometimes I may have some other underlying rheumatoid-ish problems and I don’t feel like I have ruled stuff out…but that is something else I feel like I have to deal with…
    The most promising thing you have said is that if there is avoidance for a long period of time, then there is hope that it may eventually go away. Can I get that embroidered on a little pillow?

    And you are gonna need to send me a private message on FB and define woo-woo. Ya big Tease.
    We are all lucky you are here.
    XO

  6. 8 Tracy
    October 14, 2010 at 5:00 pm

    Aw – I love you, too – and blessings on you for trying to keep a positive mental outlook. This sucks. Big time.

    I hear you on the sense of doom – Giles definitely gets the worst of it. We have literally almost broken up because of it (before we knew what was going on). Now he literally asks me if I am having a reaction if we start to fight because often I don’t realize that I am picking a fight because of the SoD. Sigh – the man is a saint, truly.

    And I hear what you are saying about being bored and hungry. But seriously, eating out is just starting to seem not worth it. I went out to dinner about a month ago when I was in NC – to a game place. They were super nice and totally careful with every single ingredient. And Giles got the elk. I just didn’t think – and took one bite. They had apparently put the regular spices on his. Throat swelling, heart racing, rash, all of it. I had to leave the restaurant. OMG, I cried when I got to the car because I was SO DAMN FRUSTRATED. And then – three days of misery. And G suggested maybe we just don’t eat out anymore. And unfortunately, I am starting to agree. It just isn’t worth feeling that bad for three days. But then – how do you travel? I am a travel junkie, and let me tell you this is the worst part for me – I feel like my wings are clipped and I HATE, HATE, HATE taking my food along. HATE.

    I hear you on the money thing – I am not happy about it either. I do have a couple of strategies. For the fruit, I buy either the Trader Joe’s frozen organic or other frozen organic fruit. It is way cheaper. Also, I go to a fruit and vegetable market instead of the big chains. The produce is better and cheaper – AND… AND! they have this rack of fruits and vegetables that are about to go bad and are DIRT CHEAP. I buy massive quantities of bananas and immediately cut them up and freeze them and use that in my smoothie in the am. AND – most of the food on this rack is organic because the organic stuff turns faster. YUP! Because the organic stuff doesn’t have preservatives sprayed on them while growing. I also hear you can get good deals at the end of the day at the farmer’s market cause they don’t want to lug stuff back, but I have not tried it. I am a bad haggler. I have started going in with a buddy on grass fed locally grown beef. It is FABULOUS. And – are you ready? It cost 2.50 a pound. That’s right. $2.50. I had to buy a reach in freezer ($100 on craigslist) because you literally have to buy 1/4 of the cow, but in the long run, such a good deal!

    The other thing is – Giles eats pretty much what I eat, so we don’t waste money on processed foods – damn that stuff is expensive! And you know what – we eat more variety and better food than anyone I know. I try to buy any vegetable in the store I have never tried or at least something I haven’t eaten in a while. That is why the vegetable market is so much better – I never used to eat chard or kale or dragon fruit or any of the exotic veggies. G has one shelf on the fridge door for his ketchup and mayo and syrup and such and the rest is food I can eat. I literally lost my mind having to read every damn label in my own house, so we just decided to eat what I can eat and I just never touch the stuff on that door. And – we had his girls for 10 days and the only things we got that we don’t normally were eggs and cheese and bunches of gluten free stuff for the older girl. And if you want – I will figure out a recipe for both burritos and margaritas for you. Cause that’s how I roll.

    Oh, and stop drinking the water from the filter on your fridge. It made a difference for me.

    Bummer about the acupuncture – but I get it. I use my flex spending at work to pay for it – but it is hella expensive. If I could not do it, here is what I would do. I would start incorporating foods that had a diuretic effect – dandelion greens, cucumbers, watermelon. I think of it this way – along with the swelling you notice, your whole body is in a low grade state of inflammation all the time. Anything you can do to move the moisture away from your tissue will help with this. (And yes, that includes sweating). I would concentrate my efforts on not just finding what I could eat, but choosing the foods that can support my body being healthier. Dark leafy greens rock for this – and you can do them either southern style and go with crushed red pepper for a spicy dish, or mix in a little agave for a sweet dish – ladies choice!

    hang in there, Heather – you will keep finding hidden culprits and eliminating them for a while longer and it is hugely frustrating, but once you hit that tipping point, it will be so much better. Sending you lots of healing energy!

    xoxo
    T

  7. October 24, 2010 at 11:15 pm

    Oh hon, so sorry all this crap has been getting you down so low.

    It’s going to sound rather strange, I imagine, but I so completely understand where you’re at. Although unlike everyone here, if I understand correctly, I don’t have a sulfite issue. I have a gluten one. *ducks debris thrown her way*

    You’d think I’d have it made, what with all the gluten free crap everywhere, yeah? That’s kind of what I thought when they first diagnosed me, but since then, I’ve discovered that I’m one of the rare folk who is way more sensitive to gluten than your average gluten free gal. If a product says gluten free, that typically means it has about 10 times more gluten than I can eat, because the stupid term is a legal one, not one that means ‘zero gluten.’

    Most super-sensitive celiacs don’t have any doctors who understand they can be different than the ‘average’ celiac, the gluten free product labels are useless to us, even other celiacs think it must be ‘all in our heads,’ even with very physical, visible symptoms. So like many sulfite sufferers, we also tend to get lots of doctors who haven’t a clue, staff who think you’re insane or a hypochondriac, and getting sick over and over again as you try and navigate the food landscape on your own. I think the worst is when you think you’re doing well on the diet, being careful, and then you eat just one thing and suddenly you’re as sick as you ever were and you don’t even KNOW what it was that you ate, and for god’s sake if you knew you were going to react you could have at least eaten something that actually had taste, dang it.

    Or at least that’s what I tend to go through. 😛

    I was reading your post here and felt so choked up because that is so close to where I was a few days ago. I can eat less than 10 foods without getting sick, and then all of a sudden I was sick all week long and couldn’t figure out what in the world was making me ill. I was crying and in pain and completely low because I couldn’t think how I was going to get by if I lost another food. I’m in a slightly better place now because, well…what can we do? We just keep going, right? And we have the days we cry and then we pick ourselves back up, throw away the tissue pile, and jump back in and periodically wished that it was a hell of a lot easier.

    But still…virtual hug from a total stranger. I really, really wish you didn’t have to go through this shit.

    Oh, but about what you said, making a place where people could get together who have sulfite problems(If I read that right)? That’s what helped me out, well, the gluten version of it. I think it’s a GREAT idea. A super-sensitive celiac did just that a few years back – with a forum for people like me – and finding that site has honestly changed my life SO much.

    I imagine some of the same things they provide for each other would be just as valuable in the sulfite sensitivity community. The support for each other emotionally is the obvious one, but another thing that was great was people putting up what brands worked for them, or gave them a reaction, on what dates. They have ended up with a master list of brands/companies that we can eat for foods, vitamins, etc… They list them by date, so that if someone starts reacting because a company changed ingredients or processing practices, the list changes, too.

    They also had a great list of what questions to ask companies, farmers, and such to discover any gluten contamination issues (like soap used to clean machinery, mulch used on crops, fertilizer, etc…) It’s been so, so useful. Actually, it’s the only reason I found out why I was so sick. I bought a new box of salt, and somehow that got gluten contaminated. A bunch of people on this same forum started writing in who had bought a new box of this stuff within the last month. Before then, it had been perfectly safe.

    I honestly can’t imagine I would have figured out that my salt was the problem, if not for them. I would imagine this is the sort of thing that you’d find really useful when it comes to finding sulfites in the food supply, yeah? When the professionals are pretty much useless for our problems, I think our fellow community members are the only way we can get help and make it together, really.

    Honestly, you ever come up with a place for people to get together for this, I’d be happy to put it up on my blog, too. 🙂

    • November 8, 2010 at 3:13 am

      Shauna, I am sending my SIL to your awesome blog. She has Celiac too and with two young kids, it is hard. She has done a pretty awesome job of working around it, but like all of us with illnesses like this, it helps to find people that you can share and relate with…as far as a forum, there is a great one that I have found and although there are not a lot of members, the support is mighty…I have a link posted to the forum on my links page for anyone who is interested…thanks again for the virtual hug and I am sending one back now…xO

  8. October 26, 2010 at 9:34 pm

    Shauna.
    Got me teary.

    I have much to say about this but I am in the after school weeds over here in the Moran Clan abode, so I will pop on later, but just wanted to thank you for the lovely words and encouragement. I feel very empowered to be meeting such a supportive group of coolios.
    Be back later….Bambi sneaking cupcakes before dinner, Cracker ripping out pictures of toys from a catalog and taping them all over the kitchen walls and Alpha sneaking on video game when he is mildly grounded. Gotta love the chaos….

  9. 12 Amy
    November 7, 2010 at 5:00 am

    I came across your blog when I was doing some internet searching for my niece, who was recently diagnosed with a severe sulfite sensitivity. She wrote me to let me know that this post definitely sums up how she feels. Thank you for your honesty and openness. I know it’s helped her to know she’s not alone. Please keep sharing as you survive and thrive through this. Your blog is reaching so much further than you know! (I’m in Hawaii, and she’s in Missouri!)

    Mahalo,
    Amy

    • November 8, 2010 at 3:08 am

      Amy, what a sweet note. Hawaii, huh? Can I come live with you? Just kidding. Kind of.

      I am hoping that your niece subscribed to the blog so she can get the latest updates. There is nothing worse than feeling so misunderstood with an illness. I am still grappling with it daily. A lot of other people around here are too so it’s good to be able to vent and get different perspectives…thanks again for popping in and come back soon!


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Heather Moran

Crazed sulfite-free woman.

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