Weaving my way around Rheumatoid Arthritis.

FODMAP starts today.

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Saturday, October 13, 2012

The last time I got Gluten Zapped in a restaurant, I swore I would never do it again. I haven’t eaten in a restaurant in over 7 months.

Last night, friends were in town for a short visit; I joined them for dinner.The food was excellent, several of their friends were there, we talked and laughed and closed the restaurant down –  it was a lovely evening. I’m glad I went.

But I got zapped – major time. My friends had called ahead and everything should have been ok – but it wasn’t. I had a lovely gluten burp as I finished my meal – the very fist symptom, and one that now only occurs if I’ve been badly CC’d.

Woke at 2:30 with itchy, blistered fingers and insomnia. Took half a prednisone. Don’t know if half of one will be enough to damp this flare down.

Not what I wanted on the first day of my vacation. But a lesson learned. Next time, I do the homework. I go in person.I speak with the chef. I  inspect the kitchen. I make sure they REALLY understand that I’m serious, not just some groupie that’s jumped on the “gluten is bad for you” bandwagon. I’m the one that gets sick. I must protect myself and make sure I’m comfortable with the level of risk I’m taking.

And so,  a new commitment to me: I eat only food prepared under my direct supervision, in a kitchen I know is safe. Maybe someday that will be a restaurant, but not today, and not that restaurant.

After the market this morning, I leave for my cabin in the village. FODMAP diet starts now. Hard core, no FODMAP foods at all, even allowed amounts, for two weeks. Then the challenges.

Friday, October 12, 2012

I’m on vacation for a week! I’ll spend today “catching up” on things at home, and packing. Dinner tonight with my friends, the Farmer’s Market tomorrow morning and I’m off for a 4 day cabin retreat! I plan to take long walks in the village, maybe find a nature trail or two, and spend the rest of my time weaving and reading and relaxing in the tub! An artist’s retreat.

Hope to post some photos of my new work when I return. My friend is going to take some photos for me.

Had an interesting conversation with my son this morning. A few weeks ago, he had a nasty cold, which turned into pneumonia and an infected ear. The doc gave him Levofloxacin – 500 mg 10 tablets, which knocked the bug and he was good as new in a few days. What is interesting, is that he now says he can smell things that he didn’t know he wasn’t smelling –  the fresh turned earth, the morning coffee, in some cases he is smelling then again, in some they are just more intense. He said he has been noticing more and more smells over the past weeks. Since he has Celiac disease and joint problems, like me, I wonder if a course of antibiotics would have any affect on my smell issues. I know there is a whole group of folks out there treating their RA with antibiotics. So, I will do a little research, and think about this as a possible avenue to explore. I hate the thought of antibiotics in general – they wreak havoc with the gut bacteria, but maybe in this case, it’s what I need to turn the corner.

Weight 173.8 – up by .6 from yesterday  173.2 (high 174.5 October, low 164.5 August),  like a merry-go-round, up and down and up and down – but never getting anywhere.

Joints are happy.

I noticed I scuffed my right foot once yesterday

Edema: breasts less swollen, lymph node better, edema in balls of feet the same

Hands are a little worse – cracks on six knuckles – I stopped using the cortisone, so I guess I’ll go back to it and then taper more gradually.

A few muscle twitches yesterday,  and the vocal cord thing is ongoing.

Tummy is happy.

Today I ate: chicken sausage, eggs, ice cream, coffee, cream, sugar, fish, rice, roasted vegetables

Thursday, October 11, 2012

Weight 173.2 – down by .9 from yesterday  174.3 (high 174.5 October, low 164.5 August) – going in the right direction

Joints are happy, right foot stiffer than it has been. I also noticed I scuffed it a couple of times yesterday & once this morning

Edema: breast less swollen, lymph node better, edema in balls of feet.

Hands are a little worse – cracks on three knuckles.

No noticeable muscle twitches yesterday, but woke frozen again and the vocal cord thing is ongoing.

Today I ate: boiled eggs & mayo, chicken broth, peppers stuffed with chicken and herbs, chicken sage sausage, pork chop, rice cooked in chicken broth, snickers bar and vanilla ice cream and Tootsie rolls. Fell off the fodmap wagon. But – no coffee!

Wednesday, October 10, 2012

Weight 174.3 – ugh – up again by .2 from yesterday (high 174.5 October, low 164.5 August) – will this ever stop?????

Had acupuncture yesterday, she said my pulses were better than 2 weeks ago. I felt great after the session – better than I’ve felt in a couple of weeks.

Joints are happy.

Edema: sore lymph node, breasts swollen and tender to the touch, I have a lymph massage scheduled for Friday, and PCP sent a referral to the hospital lymph clinic, where it cost 5 times as much, but insurance will pay 80% because they are in network. Doesn’t make a lick of sense – insurance would rather pay 80% of $500, than pay $96 to the out of network PT who is better and better qualified.

Hands are the same.

No noticeable muscle twitches yesterday, but woke frozen again and the vocal cord thing is ongoing.

Today I ate: eggs scrambled in ghee, chicken broth, peppers stuffed with chicken and herbs, popcorn & butter, GF english muffin and butter, ginger

Tuesday, October 9, 2012

Weight 174.1 – ugh – up 0.2 form yesterday (high 174.5 October, low 164.5 August)

Joints are happy.

Edema is the same. sore lymph node under left arm yesterday, a little better today.

Left arm seems ok today, no noticeable soreness on touch or movement – that took 3 weeks to resolve.

Hands are the same, still dry, no new blisters or cracks. Still using cortisone & rx moisturizer once or twice a day.

Fewer muscle twitches yesterday, but I was busy most of the day.

I have this other weird thing with my breath and vocal cords that’s been going on about three months. When I’m at rest, occasionally I will feel a build up of pressure in my throat, then after some time – several breathes – there will be a big exhale of air with an accompanying strange rattling sound from my vocal cords. The first time it happened was during a lymph massage. It continues to occur when I get lymph massage, and now when I get acupuncture and more recently, just when I’m at rest.

Last night it happened as I was falling asleep, in the middle of the night – did it wake me or was I already awake? – and this morning as I was waking up.

A bit of research this morning brings me to a possible idea – resting tremor of vocal folds – symptom of PD.

Saw the PCP Friday, she is “working on” the neurology referral. Apparently, it can take months to get in to see someone.

And so, I wait.

On Tuesday I ate: ginger tea, eggs w/ mayo, cucumbers, chicken w/ mayo, peppers stuffed with chicken, herbs, rice in bone broth. 1/2 cup coffee, cream, sugar. Heartburn and cucumber burping all afternoon – dang I’m really liking the cucumbers as substitute crackers. Tummy fine rest of day.

Monday, October 8, 2012

A new beginning. I’m starting the FODMAP diet soon. I’m working with a nutritionist, who is very knowledgeable about celiac and is on board with Paleo. I’m taking the FODMAP diet book to her today. She had heard of the diet, but not read anything about it. I can see her at the on-site clinic at work. My plan is to see her every two weeks, so she can review what I’ve done, and help me evaluate and tweak things. I’ve never worked with a nutritionist before, so this is a new venture. My goals – lose 40 pounds, get the edema under control, see if I can find anything else that is causing the abdominal bloating, reduce the number of gluten zaps. I’m hoping that working with someone will help keep me on track, keep things in perspective, give me someone to “lean” on and dialogue with. And, hopefully, her years of education and experience will add something to the mix that I don’t already know.

Weight: 173.9, down from 174.5 yesterday. PCP believes the weight gain – 10 pounds this past month, is edema from the prednisone.

My arm is about 95% better. Still can’t lift it over my head without a little twinge.

Joints are good this am, in spite of a 20 degree temp drop. Fall is here.  RA is taking a back seat. Hope that means my joints are healing.

Hands are better, no new blisters or cracks, skin still dry on knuckles, but better each week.

Mysterious muscle twitches continue.

On Monday I ate:

4 eggs, with mayo. Chicken breast, with mayo. Ginger tea with sugar. Cucumber, 1/2  cup coffee with cream/sugar, 1/2 ear corn w/ butter, roast chicken, mashed potatoes w/ butter/cream, rice checks w/ sugar cream

So – almost FODMAP – too much cream and sugar and shouldn’t have them together or at a meal with corn.

Had a nasty caffeine withdrawal headache. 1/2 cup of coffee at 6 and a nap fixed that. Felt good, tummy wise.


Written by wovensongs

October 13, 2012 at 4:18 am

One Response

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  1. I wish you the best, my friend. And I hope that you find this as wonderfully helpful as I have. I’ll be thinking of you!! Also, if you have not, I suggest purchasing the book as it is out in second addition now and some things have changed since information has been posted on the web. If for some reason you cannot get it. let me know. I would HAPPILY send one to you!! No cost!!!


    October 15, 2012 at 10:38 am

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