I Will Not Suffer In Silence

Last night I had a reaction to food again.

We had made “cup ‘o pizza” again, but this time we used alfredo sauce instead of red spaghetti sauce, and we added shrimp.

Soon after eating, I had diarrhea and felt itchy, especially on my scalp. And my left thumb broke out. I only had one GI episode, but overnight, the thumb worsened. Now it’s so scaley that it’s splitting - the skin is breaking open and bleeding. This is dermatitis - it is a common reaction when there’s a food or chemical allergen present. I normally break out on my left thumb, my right pinky, my scalp, and high up on my facial cheeks - I get perfect round scaley red patches on each cheek if there’s enough of the allergen present in my system.
Right now, I’m just having thumb and scalp issues. The scalp just gets itchy, thank gods. I couldn’t deal with flakey cracking open scalp. Ugh.

When this all started happening last night, I researched the ingredients in the alfredo sauce I’d purchased. I found that it has modified corn starch, lactic acid, and xanthan gum. The pre-packaged deli ham we bought also has lactic acid in it. I’ve never had a reaction to the alfredo sauce before… unless the ingredients have changed.

I researched all those ingredients, and the only one that I consider a suspect at this time is the xanthan gum. However, I’m going to have to do another experiment with all three ingredients - seek them out in food labels and buy them on purpose and consume them one at a time to see if there’s a reaction.

January 6, 2008 Edit: I still haven’t run this experiment, yet.

I was eating Amy’s brand corn tortilla cheese enchiladas, topped with Trader Joe’s jalapeño tortilla chips, when I had a full GI reaction. Started with tightening in the stomach, then full on stomach pain, then nausea, then the rest.

I looked at the box to be sure I got corn instead of flour tortilla enchiladas. It IS corn. Or so it says on the box. Maybe it was a mixup. I have no idea - I ate it all before getting sick. :(

My eyes are glassy and I’m even MORE tired now than I was before. My pulse is normal - they say when the body has an allergic reaction, the pulse can elevate. Hm.
I’m gonna go take a nap.

10pm Edit: It wasn’t the food. This has been going on for five hours now. I decided to look up “withdrawl symptoms” to the hydromorphone (Dilaudid), since I took so much of it, yesterday (well, for me, it was a lot).

Get this! (bold indicates those symptoms I am exhibiting)

The opioid abstinence or withdrawal syndrome is characterized by some or all of the following: restlessness, lacrimation, rhinorrhea, yawning, perspiration, chills, myalgia, mydriasis. Other symptoms also may develop, including: irritability, anxiety, backache, joint pain, weakness, abdominal cramps, insomnia, nausea, anorexia, vomiting, diarrhea, or increased blood pressure, respiratory rate, or heart rate. - rxlist.com

Even as I looked up the symptoms, my right upper arm began twitching, too (it’s noted as a side effect while ON hydromorphone, but for me it could be part of the withdrawl).

Go me.

Another drug I need to fire.

Oh, and george was mostly dead all day today, but returned by 9pm. No pain, yet, just bleeding. But if the pain resumes, and I have this nausea and stomach pain, THEN what do I do?
I seriously might go to ER for injection at that point, cuz I’m seriously done with abusing my stomach right now.

When I was ON the hydromorphone, I had the following side effects that I failed to note until now:

• depressed respiration
• stomach and intestinal gurgling
• low-level nausea
• headache (first withdrawl symptom I had as of late last night)

This blows. I don’t know what else to say.

My allergist/immunologist called me back today and we discussed What Next, since my blood tests came back normal for most allergies, and the thyroid panel was normal again. I told my doc I’d been reading up on hypothyroidism, and that I feel I hit every symptom in the book, and yet my thyroid is normal, so could it be I have a pituitary issue?

He thought for a moment and said it’s possible, and told me this goes outside of what he can help me with. He told me to seek out an endocrinologist. Finally, the green light. So that’s my next move. I had to see the immunologist before the endocrinologist to get this go-ahead. Sucks that I knew in advance that this is the avenue I needed to pursue - I feel I’ve wasted precious time and money, but the insurance company doesn’t like it when patients skip ahead. They need a clear trail to follow.

I’m closer to tying all my health issues together: endometriosis, pancreatitis, gallstones, pituitary or thyroid trouble, allergies… and hell I was born with jaundice, so I know my kidneys have never been robust, either. It’s all tied. I’m closer to finding out what to do to bring balance and healing, or at least better quality of life through improved proper diet, exercise and mindset.

Today while working I ate a handful of chocolate covered espresso beans. Not wanting to eat more, I savored the last one, and kept the bean in my mouth for awhile.

Well, within 90 minutes, I had a racing pulse; 91bpm. I was about to have a panic attack. Yawning or taking controlled breaths did not help, it only made it worse. So my man took me out on errands he had to run, and then we went for an hour walk. My pulse got down to 80. When we got in the door again, my heart rate kicked back up. It’s now at 87bpm.

GAH.

NICE GOING, DUMBASS.

Remember your rule? Caffeine will KILL you?

argh.

Ok, now I’m down to 73bpm.

…and back up to 77bpm within five minutes.

I know it’s likely the caffeine that made my heart race, but I’m still gonna go spend time on endocrineweb.com now, and tomorrow I will call the allergy and immunology doctor back again and ask more questions. I hit every symptom in the book except for the hair loss.

To make my already sucktastic day worse, the meal I so looked forward to tonight ended up causing me much discomfort after I had consumed it.

The meal was Cup ‘o Pizza, based upon the meal by the same name featured in the comedy The Jerk. It’s awesome! For those of us who love love love pizza but can’t have it because of gluten intolerance, this is The Way!

Or so I thought.

Within an hour of eating, my chest and stomach felt like it was expanding so rapidly that I might explode. The internal gas was too slow to come out. It gurgled and raged inside of me, and at times I didn’t know if I’d burst, throw up, or just die on the spot. Laying on my left side only made it worse, when the left side (the side of your body the stomach leans towards) is supposed to be *good* for digestion.

And then the explosive diarrhea.

I emerged from the bathroom and demanded to know what my man had put into the pizza ingredients, because we’d just tried this out for the first time a week ago and I was fine afterwards.

He said he’d added nothing. And then I flashed back to a recent excursion to the grocery, whereby I was pissed off to find that Polish sausage contained yeasts and/or corn syrup. WTF.
So with that flashback in mind, I thought, “Oh no, the pepperoni.”

I shuffled to the fridge, found the pepperoni, and read the ingredients.

IT HAS STARTER CULTURE IN IT, which is a yeast.

THAT’S why my stomach and GI tract have been expanding and grumbling and freaking out.

The reason why my body freaked this time and not last is because my man added double the amount of pepperoni we did last time.

Niiiiice. And I never knew this about sausages before. In fact, I can’t find anything on the web that says sausages and pepperonis are made or have to be made with yeasts. And we got the pre-sliced pepperoni at Trader Joe’s, which I mistakenly assumed would mean the meat would be I dunno… better quality. So of course, I didn’t check the label.

*sigh*

So now I’ve learned yet another lesson.

Want Cup ‘o Pizza? See the local butcher first, ask about how the pepperoni is made, and take it from there. Omit permanently if necessary from recipe.

Ugh.

Haven’t heard back from the doctor’s office on the blood tests for liver, thyroid and other stuff yet.

Went to the immunologist and he needs time to research all that I told him re: endometriosis/pancreatitis/allergies all being linked under the endocrine/immune system trouble I have. He, like me, wants to link everything under one umbrella but says it’s likely not so clear-cut in my case.
He’s going to order blood tests and unfortunately for me this means I have to subject myself to the foods that cause my immune reaction - namely the wheat/gluten/yeast/corn syrup/milk/eggs stuff I’ve been avoiding.
Then the big one I’ve REALLY been avoiding - he wants me to get that colonoscopy I ran away from in 2006 when the other allergist in his office told me to get that done. I chose to just abstain from the offending foods, instead.

But now, since my health is not improving, it’s time to get the dreaded colonoscopy. The reintroduction of the allergens and the prep for the test are the worst parts of the test - not the scope itself. They drug you silly for that. But I’m afraid of ALL the aspects.
*sigh*

On the employment front, this week I had two companies asking for status from me on whether I’d join them or not. The first company is a child care agency. They want me to spend $125 on fingerprinting myself and sending the data to the department of social services. They say they DON’T do that FOR me cuz they’re an AGENCY.
After much venting to my man about all this, he says I should still go for this job, and he’ll help with the financial aspect in getting started.
The second job is an office job. Need I say more? I talked at length with my man and decided finally after two months of hemming and hawing that I do not want to take that job. So I called the guy up. He sounded disappointed, if not outright mad. Too much weirdness personality-wise goes on between him and the rest of the office. It’s severely insecure, I dunno what else to call it. I don’t feel comfortable offering more detail than that. I’m better off without that job.

Wednesday is my man’s birthday - no idea what we’ll do, yet.

Continuing for a moment in the realm of diet, I have NOT been adhering well to my restrictions. Today I had chocolate and rum. Last night and today I had some shrimp. Every day I have a couple of tablespoons of cow’s milk mixed into the yoghurt mixture I make.
Today I was more stressed out than usual these days, because of the two companies wanting to hire me. I don’t WANT to go back to the working world, but I *have* to. My man doesn’t want to support me full time financially anymore while I get the astrology business off the ground. He wants us to have money to get married this year. So I go back to work soon.
In my stress over all that, I ate chocolate and began drinking the rum.

I was listening to streaming online music when suddenly the music stopped and tried to rebuffer. It had done this a couple of times and found its way back to the stream. But then iTunes did something I’ve never experienced before - it LEFT the stream completely and instead of stopping, it began playing music from my general music library. I’ve never had this happen before. The song that came on was Gravity by A Perfect Circle.

Gravity - A Perfect Circle

Lost again
Broken and weary
Unable to find my way
Tail in hand
Dizzy and clearly unable to
Just let this go

I am surrendering to the gravity and the unknown
Catch me heal me lift me back up to the sun
I choose to live

I fell again
Like a baby unable to stand on my own
Tail in hand
Dizzy and clearly unable to just let this go
I am surrendering to the gravity and the unknown
Catch me heal me lift me back up to the sun
I choose to live, I choose to live, I choose to live

Catch me heal me lift me back up to the sun
Help me survive the bottom

Calm these hands before they
Snare another pill and
Drive another nail down another
needy hole please release me

I am surrendering to the gravity and the unknown
Catch me heal me lift me back up to the sun
I choose to live, I choose to live

I got up from my chair and declared NO, I CAN’T do this, and poured another drink. But after that, I forced myself to chug water and come back to full sobriety and just DEAL with all that was on my plate. I’m not good at dealing with stuff. I love to medicate to mute things that make me nervous or anxious or afraid. But I also believe in synchronicity. And the song stuck with me and had special meaning for me.

Tonight is the New Moon - the moon of new beginnings. So I danced. I had Club Steph with the darkened house and the blue string lights. I held ritual and created energy as it were, with incense aiding me into the dance. I danced until I sweat, until my knees ached (Moon in Capricorn - Capricorn rules the knees), and danced some more. The music was what I call ’swirly’, and not the kind I usually dance to. Usually I need Industrial music. But tonight I needed swirly. Stuff like Dead Can Dance, Tristesse De La Lune, Ivoux, Juno Reactor, and actually, ‘Colours’ by Sisters of Mercy.

Oh, and during my dancing, I got a flood of emotion in my chest and belly, and an image of my Aunt B. So I need to call her and check on her and my uncle tomorrow. He’s the uncle with Stage IV stomach cancer.

Today I hit another milestone in my astrology business. The last milestone was on the 4th when I figured out an industry secret. ;)
And today I also got permission from an independent bookstore to link to them from my business site! I spent at least eight, maybe nine hours at work today porting over changes that a web designer friend gave me. It’s not live yet - I still have nine more areas of the site to change. This would all be so much easier if I knew CSS or had money to pay a webmaster.
Soon. These things will come soon enough.
Today I am proud of my accomplishments in the realm of self employment.

And now I must sleep. I will try not to worry too much for my uncle.

Dear Steph,

You’ve abused your body for far too long. Tonight you had plum wine and you KNOW it has sulfites in it. Your face and chest rashed out. Then you had ice cream. Now you have new uterine and anal pain because it’s all kicking back up anew, just when you thought george went away for a few weeks.

In yet another attempt to get it through to you, it’s time I told you in terms that you may understand better…

chocolate will KILL YOU.

cow’s milk will KILL YOU.

I’ve written out a sign that says similar and put it next to your monitor. I can print more all over the house if it will help.

AS SOON AS YOU START AVOIDING THESE THINGS PERMANENTLY, YOUR HEALTH WILL BEGIN TO IMPROVE.
Your immune system will stop reacting so violently. The Endometriosis definitely hurts less without chocolate, milk, sugar and artificial sweeteners.

And now that it’s public, perhaps your friends can help you ADHERE to these words of caution.

Love,
Steph

P.S. good job on the Budwig Diet. Keep up the good work!

Did you know that Dynasty brand Chinese-style extra hot mustard has wheat in it?

Neither did I.

Well, THAT wasn’t fun.

Yes, even a teaspoon full of mustard on a hotdog, ladies and gentlemen… and it sends my GI tract into HOLY CHRIST WTF mode.

Good times.

I have learned my lesson - always - ESPECIALLY - look at the ingredients on condiments.

I’ve been gluten-free for a year and nine months. You think I’d have learned the ropes by now. Ah well.

Spent all day yesterday sneezing and having intermittent faucet dripping nose action. Had some mild coughing fits but nothing too bad. The worst part was the foggy brain and being SO tired. And then the sinus headache started in around dinner time.

My man decided last night that since both of us are now sick, that he’d buy us dinner instead of having to make dinner. We got something quick and cheap and brought home Boston Market food. Of course, as I sat there chowing down, the food tasted a bit sweet to me. I said “great, I think there’s corn syrup in this”.
And I was right. I thought the corn syrup was in the creamed spinach but no, it was actually in the fecking squash casserole! And there’s wheat in the squash casserole, too! Not enough for me to get sick on it seems, but obviously I want to avoid it in the future.

Throughout the day and even after dinner, I found my stubborn streak and held onto it tightly, and got over a full day’s work done for my business. Even went out and bought printer paper, and though it’s a shade off, it still does the trick for printed reports. I’ll get OCD later and try again to match the colour from the site to printed paper.

Today I started off the day with a really bad nightmare, and it took me about an hour to settle down (I think chamomile tea and a nice email from my friend wanting to buy my product helped, too).

I’ve been VERY tired again today, and my eyes feel itchy and swollen, AND I’m still feeling like george is gonna be here any second, too. I wish he’d make up his fecking mind and be early already, instead of dragging on the pain for days before the Real Pain.

I keep trying to get work done, but I can’t focus for shit. And now the coughing has started again. GAH.

I hate today and it’s not even noon, yet.

Back on July 6, 2006, I had eaten buckwheat pancakes and had a hypoglycemic attack, which is also what happens when I eat foods containing wheat. I suspected I was allergic to gluten, not just wheat as an isolated grain.

Since that time, I’ve been terrified of buckwheat, despite numerous sources citing it as gluten free.
I’ve also read over the past year that buckwheat is easily contaminated by glutenous flours and grains. That’s likely what happened to me last year when I used a buckwheat pancake mix - there must have been some glutenous flour contamination going on.

My health counselor gave me a cupfull of buckwheat a few months ago, and told me to soak the grain for hours, then rinse it, before cooking it. It was not in powdered form.

Well I tried that last night - I soaked it overnight, and today I made a breakfast porridge out of it, with a banana and cinnamon. It was tolerable, taste-wise. As I ate it, my stomach grumbled and gurgled a bit, but I did not have a sugar attack, nor did I feel nauseated, nor did I have intestinal panic.

So, lesson learned - I will eat buckwheat, but I will do so with extreme caution.