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Saturday, May 19, 2012

It seems that with my illnesses, I've changed. My dreams are more vivid. I know I spend more time in dreams. I sleep more some weeks than others. I drop off at the drop of a hat, sometimes with no reason or warning, which annoys Ronnie. Sometimes the need to sleep overwhelms me, and I've already slept so long. But it's not quite narcolepsy, I think? Then there are times I hardly sleep at all, usually during those times when I feel somewhat healthier. I don't always sleep long, but often when I am up and down at night, or in the times when my circadian rhythm is upset and I sleep in the day... I keep returning to the same dreams, over and over, and go a bit further in each time, rather like watching a series on television where they keep giving you a quick run through of what has already happened, before the next episode, in case you missed something. That kind of annoys me but it's nice if you miss an episode. Only I didn't miss any!

I'm actually awake most days, now, but still having pain from stress fractures, I guess. Not going out. Using the rebounder some. Not as much as I want to. I have ambitions but I'm not fulfilling them, and that upsets me.

The whole food allergy thing is annoyingly in my way. Not just the symptoms, but the whole study and research and everything I'm doing to try to get away from the symptoms, basically, without resorting to sedation from benedryl.

I've struggled to just avoid any antihistamines this past week, and really focus on the symptoms with each added food. It does get confusing sometimes, and I am going to try another tactic, I think. At the moment I'm just in a very limited mode of complex carbs like brown rice, sweet potatoes, and some white potatoes. Sweet corn is ok. Not sure about field corn or limed corn. Almonds and walnuts are ok. Flax seed is ok. Broccoli, spinach and zucchini are ok. So are peas. I can't eat a lot of raw things other than apples and melons, though. Beef, pork, chicken and most fish seem ok, so far - yet my symptoms never seem to leave, and sometimes they worsen when I'm eating what I ate the day before and had no worsening symptoms with. So that confuses me. A few things are absolutely out. Raw onion, strawberries, peanuts - and apparently cinnamon and most other spices and probably several herbs, and possibly anything citrus except avocado.

I'm apparently not really doing the whole exclusion diet thing right, though. I kind of based it on what we did with my sons when they were small, through the Institutes for the Achievement of Human Potential. That started with rice and apples and added one food at a time, watching carefully for symptoms for one day, only.

Apparently that is not how they do it, now. It's lamb and lettuce and pears, to start, and the last time I looked at lamb it was over $80 for one little leg!!! It wasn't even organic! And I love lamb so very much. That saddens me. I miss it. I haven't had any in years. Oh well.. Raud likes it, too, though Ronnie hates it. I can do with a steak instead, I suppose? If it's organic beef. Which is almost as pricy. I think Ronnie paid $7 a pound for some ground up grass fed beef. Same thing I used to pay about $0. 50 a pound for, on the hoof. As for the lettuce, it's awful cooked and I don't seem to do well with it raw. Ditto pears, for raw, as they feel furry in my mouth. And no I won't eat canned.

So, maybe I need to start over, yet again, since it seems that it is taking a long time to get back in to see my doctor - which is annoying. I know the allergy tests are in, but if it is Oral Allergy Syndrome it may well be that it is not going to show up on the standard allergy tests, which means he's going to be no help whatsoever.

I've been reading so much about it. I've found so many people on various forums and in groups, answering questions and telling their stories in fits and starts. Most have no medical support. It's what they found on their own, or in a book, or from someone else's experiences, or by accident, or by research online, as I am doing.

For some, it seems that carbohydrates may be related to the problem. One woman said that she can live on two things and be healthy without symptoms - chicken and lettuce. Add anything else and she is ill. And she is not well off financially and can't afford to live on chicken and lettuce and so she adds things like rice to save money, and has a return of her symptoms which actually involve her whole gi tract, as mine does. Several others mentioned carbohydrates specifically. One said that it has something to do with the palate and taste buds reactions to carbs in food and the signals they send to the brain when they detect them. So, for her, no fruits, no grains at all. Many, many are using coconut oil. Many say it helps them to ingest it. Others, who have only oral symptoms, use it for oil pulling. Many say how they use it simply to reduce the inflammation in their mouths and esophagus. Others say that, with strict dietary changes, it has cured them.

One very interesting thing is that, thus far, all of the people that I have read and heard from and emailed with, have severe sensitivities to gluten. Several are late diagnosed celiacs. Which leads me to think that, with the known association between celiac/leaky gut syndrome/and autoimmune disorders, that this allergy syndrome may actually be symptomatic of yet another autoimmune disorder. I have at least three of them. One since early childhood. Thyroiditis is autoimmune. So is Menier's Syndrome, which may actually mean that the hearing loss that I have associated with this, might be an autoimmune reaction to the measles virus that triggered it, and caused leaky gut syndrome? There is also Sjogren's syndrome, which I have many, many symptoms of, but which they don't bother with because they aren't going to treat for it, because darn if I am going on chronic cyclosporine ingestion. I use herbals and such. Whatever... not worth over thinking, here, as it does not help the issue, really.

So, maybe I should start a diet of coconut oil, meat, and a few cooked veggies, and see what happens? I have to get more veggies in, but it's worth a try. It takes a heck of a lot of willpower for me to do this, since I'm still cooking rices and pastas and cheesy things for Ronnie and Raud. Not to mention hot dogs and beans, which I can't touch, but which Ronnie loves. From the time my oldest was eating, I've had to cook two meals for everyone, as his diet has always, always been very limited. Ditto adding in Raud's intolerance of food colorings and additives. I could keep Raud on what I eat, but Ronnie won't do it. In fact, with the stress fractures limiting my shopping time, he's bringing in white flour too often, even though he was happy with the results of not eating it, as he lost four inches around his waist. At least until he started eating them again. Oh well. It's his body but it's Raud's too and Raud just has no self control where it comes to food, at all.

Whichever way I go, I need to go back to basics.

And Leila is coming to visit in July! Hooray Hoorah Huzzah! For TEN DAYS! Which is awesome! I miss her.
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Member Comments About This Blog Post
    I don't know personally what you are going through, Sue - but I've been trying to cook for my stepdad - he is allergic to just about everything. No fish, no fresh veggies or fruits, no spices or herbs at all except salt. He's been married to my mom now for about 8 years and it's been really interesting taking him out to eat at our favorite restaurants; but we've been able to find several "work arounds" for him so he can enjoy going out with us!

    Keep at it, Sue!

    2374 days ago
  • JILL313
    Hi Sue, I hope you can figure it out with the elimination diet. It must be hard to narrow it all down. Fight on Sue, you're so very worth it!

    My sons and I are doing fine. I need to re-read the book the Spark as mine isn't very bright right now, to say the least.

    Have a wonderful Sunday.


    2375 days ago
    It's so hard Sue but don't give up, maybe one day.
    It must be so hard to cut out so much from your diet, I find mine hard enough but it seem nothing like what you're going're an inspiration. emoticon

    I've been attending an allergy clinic. There are twenty of us and a specialist nurse, it's a sit and talk and ask questions kind of session and very interesting.
    I'm glad you're in touch with people who suffer in a similar way, it's very helpful. I've learnt a lot from my sessions and though it's not a solution it helps to know that I'm not alone in all this.

    Have a wonderful week-end emoticon
    2376 days ago

    Comment edited on: 5/20/2012 5:39:28 AM
    I hope you find what works for you. I'm glad you're researching solutions and reaching out to other people who suffer from the same allergies.
    2376 days ago

    I just cannot imagine having to cut so much food out. I hope somehow, some way, you're better able to identify the worst triggers to avoid the most intense symptoms.
    2376 days ago
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