heartsongs

Weaving my way around Rheumatoid Arthritis.

Just a bunch of whining and health stuff

with 3 comments

Nothing much interesting to say these days. I’m so frustrated with the health stuff I’m going through at the moment, that I don’t have much energy for anything else. So far, keeping track has not shed any light on anything except the fact that if I keep eating the way I’m eating, I’ll never figure out any pattern. Something has to be triggering the mess of blisters on my hands and the tummy stuff and I need to find the culprit, so I can heal.

__________

The Report Out – Friday

Woke with tummy flat, feet at a 1. hands .5, edema seems steady. Scale up 171.5 – drat.

Left hand less stiff than right – usually it’s the other way around, so maybe the chiro is helping.

I have hundreds of new blisters and had “D” three times last night, both before & after dinner – so it wasn’t dinner. Wish I could figure out the time line. The blisters are popping out in all kinds of places I’ve never had them before, now have them on three fingers and back of right hand – for 40 years they’ve been mainly on left hand and one finger on right hand and never on the backs of my hands. Now the backs of both hands are covered in little bumps and scabs and cracks and dry skin – not an inch of normal skin. I’m so frustrated with it.

Strangely, I haven’t had the fuzzy brain that normally goes with a gluten zap.

Yesterday I ate:

2 ears of corn with butter, 4 hard-boiled eggs. 1/2 a small watermelon, HD vanilla ice cream, Chili (beef, peppers, tomatoes, onion, cumin, chili powder, red pepper – all from my garden, or tested) and corn bread – again something we all eat regularly enough to trust. No coffee! So, what goes? Is there something here I’m not seeing? Is the HD ice cream suddenly CCd? Is dairy a trigger for the edema and blisters and “D”.

___________

The Report Out – Thursday

Woke with tummy flat, feet at a 1, hands .5 – all over edema seems down. Scale said 171.0 – strange how it will let me gain as much weight as I want in 24 hours, but if I lose more than a pound, it stops at the next pound down, and won’t go any lower.

hands seem a little better each day. no new blisters today. a little less dry, less itchy, less red. Still a long way to go to heal. One knuckle is cracked today, they seem to take turns.

I’m taking a new approach to my food – simple – maybe my tummy needs a rest.

Yesterday I ate: peaches for breakfast, peaches for lunch,  popcorn & butter & salt & nutritional yeast for dinner, coffee (down to 1 cup – from 4!) & cream & sugar and some ginger. My tummy was happy all day.

__________

The Report Out – Wednesday

DAMN< DAMN <DAMN

Got the bloated belly last night – immediately after dinner – looked 6 months pregnant – we had a couple of new to me ingredients, but things my kids have been eating – guess I will test them tonight, see if we can figure out what got me.

The bloat is down enough I can actually zip my pants this morning, but still uncomfortable.

weight up to 172.1 – that’s almost two pounds overnight – a sure sign of food related edema. ERG

new blisters, lots of new blister, all else about the same

and the gluten dream – I ate a whole pan of Amy’s sticky buns before Sean caught me in the act. She made them for a bridal shower – thank goodness Amy and the sticky buns are in Oregon – sometimes I wake from the dream and am not quite sure if it was real. Seems I have some version of this dream every time I get glutened – my subconscious actually telling me – it happened – again.

We made Thai food, so the pepper sauce and the soy sauce are suspect. Of course it can be anything – the new bunch of cilantro, or that particular bag of rice or, or, or – we use few prepared foods, but still seem to get glutened regularly. I’m really tired of being sick.

Guess it’s time to dial back to a few basic foods and stay on them until I’m healed.

Yesterday I ate: I don’t remember much – birthday cake & ice cream & chicken and left over vegetables, nothing new & nothing that should have caused problems

__________________

The Report Out – Tuesday

Last night, the edema in my wrists was less – almost to normal! Of course, today it is back. Sigh. I’m playing with vitamin C to see if that can help my skin heal – up to 4000 mc twice a day. Maybe that is helping the edema? Maybe the weather shift?  Edema and stiffness in balls of feet and toes is less, too. Scale is steady at 170.3.

Slept poorly last night – according to fitbit – awake 14 times, but I feel alert and rested this morning. No fuzzy brain. Maybe I’m just far enough out from the last gluten zap.

I know all these things – the edema, the fuzzy brain, the skin blisters, the restless sleep, the RA –  are all related and all related to the gluten and maybe some other food triggers, too. I just need to figure it out, and to figure out how to stay safe from gluten.

They babies spent the day in the playpen. The big girls were around several times to check on them. DS fixed a temporary wall in the run, so we can move the babies in there for part of the day (especially when it’s raining) so the big girls can see and hear them and get used to the idea that they are in “their” run, but not get to them. We’ll do that until the little gals are big enough to run the yard, and then try introducing face to face and see what happens.

Yesterday I ate: coffee, cream, sugar, peach, tomatoes, corn, chicken, zuc, basil, garlic, birthday cake & ice cream, popcorn, butter – mega doses of corn for a few days, see if I can determine if it has any effect on the edema or RA.

_____________

The Report Out – Monday morning

Woke with itchy ear canals and new blisters on my hands, 1/2 pound weight gain.

So now I’m beginning to suspect the Reese’s peanut butter cup I had at the farmer’s market yesterday. Since they are my favorite go to “food” for when I’m out and about and just want something besides my lunch, I eat them – hummm – probably more than I want to admit. Could that be enough, if it’s low level, to not give me “D” but to keep my hands from healing and my edema in place?

Guess it’s one more thing I don’t have to bother eating or spending my money on. Having Celiac sure simplifies my life – never have to decide which restaurant to eat at or what menu item I’ll eat once I get there! Don’t have to shop the middle aisles of the grocery store, or decide which cookie, bread, cracker, pasta, etc. etc. etc. I’ll buy! A silver lining, of sorts.

Yesterday I ate: coffee, cream, sugar, stuffed peppers (pork, cheese, cream cheese, salsa), eggs & pork chop, ribs, greens, corn, butter, peach, tomatoes, and home-made gluten-free german chocolate cake and ice cream to celebrate FSIL birthday.

_____________

The Report Out – Sunday

Woke feeling off, and was blurry all day –  low energy, low aches, edema, .5 pound weight gain, a little weepy, some new blisters & shadow of a headache. Just a blah day.

The mystery is solved – Louie, aka Louisa, is responsible for the eggs. Turns out she’s the gal in 7th grade gym glass who has a  36 DD, while the rest of us are still in training bras! She’s had her comb and waddle a full month before the other gals, and she is obviously the top hen. She’s laid her 8th egg, they are normal egg size now, and DD1 caught her in the act yesterday. The other gals are just now getting their combs and waddles. More eggs soon!

________________

The Report Out – Saturday

The storm systems have been wrecking havoc with my joints. As long as I know it’s the weather, i seem able to deal with it better. I can anticipate it, plan my activities, and do my best to remain calm and remember that it will get better as soon as the weather shifts. I always loved rain storms, now I love them for a different reason – once the storm gets here, my joints behave again!

169.5 – erg – guess I really do have to shun all the grains and starchy veggies if I want to lose. I ate rice Thursday & a GF English muffin on Friday – can’t remember what else.

_________________

The Report Out – Friday

How did I lose Wednesday and Thursday – the week is speeding by.

Woke with itchy hands, but no new blisters.

The weight is down for the second day in a row – 168.5! That’s three pounds since Monday.

When I went to bed last night, my feet were the best they’ve been in a long time – no edema in the balls or toes. We had a major storm overnight & I woke with them right back where they have been – golf balls on the soles & toes curled so that it’s difficult to get my VFFs on. Drat. I don’t think I got glutened, so will blame it on the storm for now.

Slept fairly well. All other joints about the same. Hands stiffer than yesterday, but at my normal.

Yesterday I ate: coffee, cream, sugar, chicken, mayo, tomato, melon, avocado, carrot, spinach, onion, green beans, burger, rice w/ bone broth, zucchini, garlic, ginger, basil, salt, Starbucks iced americano & sugar. Nothing processed. My tummy was a bit off after lunch and again after dinner. Maybe the butter? the tomato? Just the tiniest discomfort, not a gluten feeling.

I really need to go back to the elimination diet and then take about a year to re-introduce foods. I did it too fast in the spring, and never found anything that seemed to make a difference.

__________________

The Report Out – Tuesday

Drat, I entered this and didn’t save it somehow!

Hands and feet about the same. Slept fairly well.

woke with whole rash of new blisters – ugh. In general the DH is better, the meds seem to be working, if only I could stay unzapped for a month so they could heal.

Yesterday I ate:

coffee, cream, sugar – down to 1/4 cup, ginger, ice cream, 2 ears of corn, butter – my tummy was off all day & nothing tasted or felt good.

_________________

Never got the 6th egg. Maybe she will lay it this morning or maybe she hid it somewhere in the yard. We suspect it is Louie who is the early layer. She’s been keeping away from the other hens. For awhile, we though she was a roo, the jury is still out. She acts different from the other girls, but maybe she’s just a tad bit older, or has matured faster.

_______________

The Report Out – Monday

ERGGGG – got glutened at dinner – was it the pepper? I washed the pepper corns and dried them in the oven,  What a pain to have to wash and rinse and dry pepper – yet it seems to be an ongoing source of cross contamination. Sarah will use the test kit and test it this morning. No one else got sick, and we all ate the same meal – I was the only one to use the pepper – drat.

Symptoms: Diarrhea within hour of dinner, 171.6 – 1.4 pound gain overnight, sides of nose oily (I’m beginning to think this is related), and hundreds of new blisters. My hand look like hamburger again. Sigh. I want off this roller coaster.

Balls of feet are swollen, everything about a 2, RA wise – there’s another storm brewing, so I am prepared to ride the RA wave this week.

Yesterday I ate: Chicken broth, coffee, cream, sugar, one pancake with butter and syrup, cream of mushroom soup from yesterday, peach, ginger, tomatoes, carrot, fresh squeezed orange lime juice, pepper, beef roast, carrots, celery, onion, potato.

And now the potato also becomes a suspect – maybe I am reacting to all the night shades I’m eating – or maybe just to the potato. So, they are easy to eliminate, I’ve cut back already. Just don’t want to get rid of tomatoes when my vines are heavy with beautiful globes.

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Written by wovensongs

August 17, 2012 at 7:00 am

3 Responses

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  1. I am so sorry you have been feeling so crappy. It just breaks my heart – knowing exactly what you are going through. I have all of the same issues (minus the blisters) and know first hand how debilitating this all is.
    I do have to share something with you that might be worth your investigation. First of all, let me tell you that this past week is the first time in YEARS I have found relief from all of this. Things had been getting really bad for me so about three weeks ago I went back to my GI specialist. They ran all the usual tests – including a gastric emptying test (which sometimes comes back normal and sometimes not). Anyway – the U of M has a new Nutrition department in their Mayo Building (yay!!!) and they sent me there to find out about a new program. It comes out of Australia and is just finding popularity in the US, although Mayo completely supports it. It’s called the FODMAPS diet (FODMAPS stands for fermentable oligo-, di-, and monosaccharides and polyols.) Here is a good site for easy to read info, but there is a lot more out there : http://www.ibsfree.net/ibsfree_at_last/fodmaps/ There is a book out there by Patsy Catsos, MS, RD that is really the bible on all of this. An example of FODMAPS would be:

    Lactose (also known as milk sugar, found in milk, yogurt and ice cream)
    Fructose (also known as fruit sugar, found in fruit, high-fructose corn syrup, honey and agave syrup)
    Sorbitol, mannitol, and other “-ol” sweeteners (found in certain fruits and vegetables as well as some types of sugar-free gums and candies)
    Fructans (a type of fiber found in wheat, onions, garlic and chicory root)
    GOS (a type of fiber found in beans, hummus and soy milk)

    I just have to say that it has made ALL the difference in the world and I can hardly believe it. This week I have had no bloating, no “D”, no gas, no pain, no rashes or itching and I have lost five pounds in the first week. I keep looking at my tummy and thinking, OH MY GOSH…THIS is what it used to look like!!!

    I am only on my second week of it, but I can tell you that NOTHING has ever worked like this has and I am super excited to keep going (which has not been the case with anything else I have tried).

    Anyway, I really hope that you find some useful information. If you decided to try it, I would be more than happy to answer any questions. I am seeing a very good nutritionist while doing this and she is extremely helpful and only an email away.

    I wish for better days for you!!

    Theresa
    One Moment One Life

    Theresa

    August 28, 2012 at 8:54 am

    • Good morning Teresa,

      You are an angel. I got you email last night, after returning from the dermatologist, feeling rather blue. It means so much to have you as a companion on this strange journey.

      I’ve sent for the FODMAP book and have been reading on line. This may be the key to my mystery. If it is a cumulative things – eat a little I’m ok, eat too much over the course of a day & I get symptoms, that would explain why I could never figure out what foods are causing it (besides the gluten).

      I really think all this autoimmune stuff is connected to our diet – maybe environmental triggers, too – and that we can heal, if we can just figure it out.

      Hope you continue to get better and better and better. I love your blog, your spirit, your soul.

      Susan

      wovensongs

      August 29, 2012 at 7:57 am

      • I agree, I think it is completely connected to all this autoimmune stuff. To compare my body now to the body I had five years ago…not the same body at all! All of a sudden I am allergic to the most unusual stuff. For example, I have had contrast dye in my MRI’s and CAT scans my whole life – no problem. The last time I had it I went into anaphylactic shock! I am super cautious with any new medications now. I’ve had enough emergency room nightmares to keep me from putting any new stuff in my mouth!
        This “diet” is not intuitive at all – yet, it makes complete sense. Not intuitive just because it is such a wide variety/range of food that contain these particular sugars. But the science of it makes perfect sense to me and it has SERIOUSLY changed how I feel. Nothing has done that before. I’ve done the gluten thing, I’ve done the lactose thing – only to be left frustrated at how it was not completely working. This, so far, has worked absolutely perfect. I almost don’t even want to say it out loud! So I truly hope this has some effect on you and that you find relief. I wish we lived close to each other so we could support each other IN PERSON! But, I am so very thankful for the friendship we do have and cherish it deeply. It’s been a hectic summer for me, so I am hoping that once school starts for the teenagers and my doctor appointments slow down I can have a little more “me” time to actually be on line more.

        Peace to you, Susan.

        Theresa

        Theresa

        August 29, 2012 at 5:48 pm


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