Posts Tagged ‘sulfite allergy



19
Feb
11

Goal of the day: Do not stroke out.


Oh yeah.
So I go on Enbrel and my RA is amazingly in remission.
Dude. I RAN up the stairs the other day.
Thor said, “Heather. You just ran up the stairs.”

OHMIGOD!
Cool!

But for some wack-a-doo reason, my blood pressure is freaking out. AlrightalrightalRIGHT.  STOP LOOKING AT ME LIKE THAT.  Ok.  I have been cheating, people. A teeeeeeeeny bit.  I admit it. I thought I would test out the waters since I have been on the new meds.  I got a little cocky and decided to shove some ion SO2−3 in my mouth.  See what happens.


Funny.  It didn’t look like this in the grilled cheese sandwich I shoved in my mouth.

 

I think all this evil sulfite compound is doing is shaving important hours off of my life. I called my loving, adorable and very talented Dr.Mike (and Facebooked him.  Oops. He might just kill me at my appointment on Monday. Stay tuned for the results.) and he is going to fix me up but good.
I also talked to my Rheumy nurse to rule out this as a side effect of Enbrel and she said no but she was concerned about my BP (it’s hovering constantly around 160/107) but she told me to just take it easy this weekend…“lie in a darkened room and relax all weekend until you can get in to see Dr. Mike.”)
Oh, that’s rich. HA.  HA HA.  Stop….stop making me laugh…snorting….my rock hard abs hurt from laughing so hard….milk spittake ensues.
There is no resting in a dark room.  Not over here at the residence of  666 Chaos Lane, in CrazyHeatherville, USA.
I am a mother of three wild children, a vocal recital to run today…overnight guests coming and and a lacrosse game, just to name a couple of things on my dance card for the next 24 hours.
DAMN YOU, Regal Theatre movie pretzel with a side of cheese!
I CURSE YOU, baloney sandwich on Wonder Bread white. (Oh, hot dayum, that tasted good.)

So I am medicating myself with advil and much later, in my darkened room, a glass or 2 of wine.

*********************************

Is my BP high from the food?

We will see. I am going cold turkey and see if it will come down.  Is my body just really pissed at me because I am taking Enbrel and it won’t let me swell?  So now it like, ok bitch ,that’s how you want to play it….ZAP!  (blood pressure spike HERE!  and HERE!….and just when you think it’s going down to normal…HERE!)

I do have a really swollen lymph node in the armpit of my….armpit….lovely, no?  And it really hurts.  I feel like crap so I might just have some little bug. Enbrel basically kills my immune system and kids have been sick all around me this week.   Seriously.  Like one kid at a Valentines party sneezed right on me.  It was all over my arm.  Gag.  That, and Alpha sneezed on the butter the other day.  I mean it.  For reals.

Wish me luck, wish me willpower, wish me to live through the day…happy weekend everyone!

04
Feb
11

Pump Fake (quite literally)


Today was my training with Thor for my first Embrel injection.

What we learned today:  I am a suckass wimp.

And so is Thor.

I had to go in to get my first shot shot today of this new biologic drug that is supposed to not only make me feel better, but basically make me symptom-free.  Which is just about perfect timing as yesterday I was calling friends to see if anyone had a cane lying around that I could borrow to walk around.  Jeez, Louise.

So we get there and because insurance is so annoying, they had to give me a sample.  They get me all prepped, (Thor was supposed to give it to me but he “assured” me that it was probably best and easier if I do it a.k.a.  Thor=pussy.)  Alright, so he’s not a pussy, he is very sweet,.  I am just trying to make myself  look better.

So I have to drop my pants

and get up on the table with Thor and Dr. Rheumy and Nurse Nice.  (She is very nice and helpful.)  Dropping trough in front of strangers is never fun.  And I wished that I hadn’t worn “that” underwear.

My rheumy is french and rather, well, hot.  And she is a very, very smart blonde and I have a feeling she can also really cook.  So she is trying to instruct me how to do it and I have to take the alcohol swab and rub it in a certain direction and then I do it but I bump my hand on it and I have “contaminated” the area we has just swabbed so we have to re-swab and well, there were a lot of disappointed french sounds being uttered but she was being as patient as she could be with a blonde trying to give herself her first injection.

And do I finally and do and it was cake! So Easy!  Didn’t hurt in the least!

Cause it was defective.

Total dud.  Absolute pump fake.  HEY!  Sue that pharmaceutical salesmen and let me kick his ass because now we have to wait another 10 minutes for the next sample to cool down and do shove it in my other thigh.

I put my pants back on and Thor and I stared at each other for another 10 minutes.

I know it worked the second time cause it freaken hurt.  And it takes about 15 seconds for it to all get in there so yeah, ow.  But I am a warrior and I plowed through.

“Oh Embrel, course through my body, heal all wounds and swollen joints, help me walk pup the stairs without tripping and falling into the wall.”
So far, so good.  I seem a bit more tired than usual, but I am not bleeding about the eyes and ears and that’s all that really matters.  The only really important thing is that I cannot get sick.  Really.  Like, don’t sneeze near me or touch me if you have an infection or rub on me if you are pussy or leaking anything.  And really just don’t ever really rub on me in any situation.

I was worried because I have heard that the quick pen version of how my meds are injected has preservatives in it but so far, so good.  I have read where some sulfitenots use the version of the drug where they have to mix it themselves and shoot it that way and that is just a little bit too Sid and Nancy for me, so I hope this one works…

I still have to stay on my steroids for now, and i think they mask a lot of my sulfite reactions, so I will continue to gain weight as I have been cheating and sneaking some little things here and there.  Like blonde oreos…cause…well…you know…

Happy weekend to all!
XO

Heather

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31
Jan
11

When in doubt, post kale.


Well, hello there.

I have been an absentee blogger.  Bad blogger, BAD BLOGGER.

I have mostly been trying to wrap my head around this whole business of my rheumatoid arthritis, which has hit me like a mack truck.  And, what to do with this blog.  LOL

I mean, I definitely have an allergy to sulfites that makes my RA worse.  But this site seems to be geared towards sulfitenots and lately all I really want to focus in is the RA crap and I don’t want to bore anyone.  More than I usually do.

So I thought, I would just re-invent this blog to meet both needs.  And the RA peeps are gonna have to deal with the sulfite stuff and the sulfitenots are going to have to deal with the RA crap.

And the sharks and the jets are gonna have to play nice at the park.

I found a recipe that involves kale because it’s sulfite-free and the antioxidants are huge in helping to fight RA.  Will post it in the recipe section.

I feel like I have gotten into a pretty good routine with my no-sulfite eating lately.  I definitely am not getting the major attacks as I used to, partly because I know how to check everything now and also, friends and family are being really supportive.  Everyone has been really conscious and caring about what I can and cannot eat and it has made a huge difference.

There is still the pink elephant in the room question looming around all the time though:

Do I truly have this allergy or is it just my RA?

My Rheumatologist kind of doesn’t believe me.  LOL  Like, I love her, she is so cool and doing an amazing job with me, but when I bring it up, she looks like this

And in her cute french accent, she looks at me with a slide glance and says, “I don’t know about all of that.”

but I DO!  I DO know!  I eat something and 4 hours later, something bad happens.  OK, so there is no test.  But that should be enough, right?

We need to find someone, somewhere, some dr or allergist who will hurry up and make a test so we can all take it!

Let’s go one step further, people!  We need our own ribbon!  But instead of it being pink or red, white and blue, or yellow, maybe it should look like this:

Wear it proudly, sulfitenots!  (Don’t stab yourself putting it on.)

 

ok, I have to run.  But I also wanted to tell you that I got a Cuisinart breadmaker for my birthday and it’s AH.MAY.ZING.

Before I got it, I had bread pimps out there in the world for me…minions who would grab the Breadsmith bread that I can eat that you can only get Whole Foods or stores that are not near me and I would have to have them store it in their freezers.  But now I can make my own and it’s sooooo easy!  Who would have thunk that this blonde can make hot, succulent, steamy rosemary bread?

That’s it.  Have to go make a batch right now.

Huge snow storm coming to Chicagoland tomorrow…Stay warm!

 

 

06
Dec
10

I Lerve Groupon


ORGANIC CHAT

So, hi.

How are you?

I’m fine.

Just got back from doing some shows in Wisconsin.

I had an omelette Saturday morning and it virtually killed me.

But it was fricken TASTY.

What else is going on with you?

So, check this out…

ORGANIC FOOD DEAL

Organic food for cheapy cheap!

If I had any money, I would get it for myself, but I don’t, so you get it!

I try to buy as much organic food as I can, especially produce, but it breaks the bank, know what I mean?  Plus, there are some fruits and veggies that you just don’t need to bother with in my opinion.

Here is my DO buy list:

Peaches, apples, cherries, bell peppers, celery, strawberries, lettuce, spinach, tomatoes, raspberries, carrots

and my DON’T BOTHER list:

avocado, corn, pineapple, mango, asparagus , eggplant, all melons, broccoli, bananas, cauliflower, squash

I mean, if I could, I would buy all of these things.

If I could, I would also take a bath made entirely out of butter, but we can’t afford these things, can we?

Check this out…I ran across this somewhere, don’t ask me, I have 693 window tabs open right now…

all these organic foods are actually made by the same people that make Heinz canned baked beans and chicklets.  CHICK-EH-LETS!  CHICK-EH-LETS! CHICK-EH-LETS!

It’s all complicated.  The organics game. Too complicated at least for this blond.  Like, for example, these organic companies HERE are actually owned by Hain Celestial who are in some cahoots with Heinz.

I mean, would I rather grow everything in my backyard and then have some cows and goats and chickens and make everything myself?  Well, I would not mind the garden.  But yeah, not ready to deal with the other stuff.  If I think about the fact that chicken pops an egg out of it’s ass, then I can’t really get the gumption to put an egg in my mouth.  And I am NOT going to touch anything that just came from a chicken ass.

So these big corporations that say that they only deal in organics are actually hanging out having big boy drinks and rubbing elbows with the “bad guys” who make chipped beef in a can.

Then I ask myself, why do I care?  I mean, I should.  I have children.  I make them put all this food in their mouth.

Do you?

And now I have to go clean my house and make dinner, do the homework and get Alpha to lacrosse practice.  So i’ll blow off thinking about this for now.  It’ll pop back into my steroid scrambled brain at 3:47am.  Mark my words.

14
Oct
10

First cookoff item: Baby Bear Porridge


I woke up without the use of the OTHER hand.  I ate virtually NOTHING yesterday but I did have some baked Kettle sea salt chips.  The baked part was new.  REALLY?  Would that be it?  *Sigh* Will have to call company.  Anyway, I am henpecking with one hand so you know I started typing this entry last Thursday and I am still going.

But I must rise and conquer. Can’t blow on my stupid first day of the stupid cook-off that stupid me said that I would stupid do.

So, I decided to make a breakfast item because I never know what to eat in the mornings and I am looking for something healthy, filling, fast and something that won’t swell my appendages.  I smell oatmeal ceilings.  Off to the races!!!!
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13
Oct
10

Kitchen blonde+holiday planning=challenge


I went to a weenie roast the other day.

I ate beforehand and brought my own wine.

But I just couldn’t help myself with the food.  It was so amazing and forbidden.

This is what I ate:

  1. 1 ritz-like cracker dipped in yummy, slutty pizza dip
  2. 1 bite of Thor’s personal serving of cheese-chili quiche
  3. 1 freshly made burger, seasoned with REGULAR salt and pepper with a slice of tomato and lettuce on top.

That was enough to put me into 3 days of hezzell.

And it really got me thinking about the holidays and all the partying I am about to do.

I DOUBLE DOG DARE ME!

OK, so this is the challenge I am giving myself.  I will be making one thing a day that we, us sulfitenots, can eat.  Will some of it land on my wall or ceiling?  Probably.  Will it be edible?  Doubt it.  Will any of you want the recipes?  Not Way, Shirlay.  But as Thor is my hot*ss husband/witness, I CHALLENGE ME TO A COOKING CHALLENGE!

 

 

SUPER BAD COOK LADY TO THE RESCUE!

 

Alright, sheesh, now I just blogged it so I have to do it.

  • I declare to find my apron on the floor in the corner of my pantry and remove all dust balls,dead spiders and roll-away Cheetos balls.
  • I promise to wash my hands and not adhere AT ALL by any 5 to 10 second dropsie rule.
  • I swear that none of you will ever have to actually sample what I am making in person and that you will be much better off making it yourself.
  • And I vow to not buy anything from Whole Foods and pretend that I made it myself.

 

WONDERBLOND POWER ACTIVATE!

FORM OF: SULFITE-FREE COOK!

and now……………………………………………….OFF TO THE JEWEL!

 

(Sh*t.  Can’t find keys.)

 

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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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Heather Moran

Crazed sulfite-free woman.

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