heartsongs

Weaving my way around Rheumatoid Arthritis.

Day 5

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7/26/2016

Feel better today, although my sleep was restless. Gained 2 pounds. What’s up with that?

Foods eliminated to date:

Dairy, Coffee, Legumes, Seeds, Chocolate, Seed based spices, other grains (I’m keeping corn for now, since it is in season, and rice for a few more days to make the transition easier), oils (except avocado and EVOO), nuts and gums (guar, carrageenan, etc.).

Food: chicken, avocado, cherry tomatoes, corn, pop corn, nutritional yeast, coconut oil, pork, grapefruit, raisins, avocado, salsa, corn 

Liquid:

12 oz ginger tea

12 oz H2O

6 oz black cherry juice

Stats for the day

Sleep: 11-6:30 (pee at some point) woke to the sun. One hot flash.

Hand and feet -1 all other joints behaving

Weight: 184 Starting weight 182. Gained 2 pounds overnight – ugh.

Edema Treatment: R2D2 – 1 hour left leg; 1 hour right arm

Exercise: zip – too hot

Meds & Supplements:

LDN

Levothyroxine

Oral Sinus Probiotic

 

 

Written by wovensongs

July 27, 2016 at 7:34 am

Day 4

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7/25/2016

Woke groggy and feeling awful. There’s a huge front stalled over the midwest, that could be getting me, DD2 had a sore throat the past two days, so I could be catching that. Whatever, I feel icky. No brain fog, so that’s good.

Foods eliminated to date:

Dairy, Coffee, Legumes, Seeds, Chocolate, Seed based spices, other grains (I’m keeping corn for now, since it is in season, and rice for a few more days to make the transition easier), and oils (except avocado and EVOO).

Food:

Potato, egg, onion, chicken, more of the same, orange

Liquid:

12 oz ginger tea

32 oz H2O

Stats for the day

Sleep: 9-6:15 (pee at some point) woke to the sun. One hot flash.All joints behaving, didn’t have any morning stiffness!

Weight: 182.2  Starting weight 182. lost 1.4 Lost yesterday.

Edema Treatment: R2D2 – 1 hour left leg; 1 hour right arm

Exercise:

Meds & Supplements:

LDN

Levothyroxine

Oral Sinus Probiotic

1 prescript-assist probiotic

5,000 D3

Written by wovensongs

July 26, 2016 at 9:07 am

Day 3

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7/24/2016

Headache finally gone. Woke groggy with brain fog. Got up and fed and watered the chickens and let them out to forage. Thought about going back to bed, but it was relatively cool and I knew I had a tiny window for gardening. Glad I made that choice, because my grogginess cleared up and I had 2 nice hours in the garden weeding and mulching and listening to the chickens clucking.

Foods eliminated to date: Dairy, Coffee, Legumes, Seeds, Chocolate, Seed based spices.

Food:

Blackberries, corn, avocado/lime/garlic, corn chips, potato, mayo, egg, onion

Steak, brussel sprouts, potatoes, tomato slices

Liquid:

12 oz ginger tea

24 oz H2O

Sleep: 11-6:30 (pee at some point) woke to the sun

Stats for the day:

Balls of swollen – 1

Hands stiff – 1

Other joints behaving

Weight: 183.6  Starting weight 182   lost .4 yesterday

Edema Treatment:

R2D2 – 1 hour right leg; 1 hour left arm

Exercise:

2 hours in garden, mulching, weeding, working on new herb bed. Back was fine today.

Meds & Supplements:

LDN

Levothyroxine

Oral Sinus Probiotic

 

Written by wovensongs

July 25, 2016 at 6:45 am

Day 2 – Headache

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7/23/2016

Took it easy yesterday, worked and went to bed early. I have a killer caffeine withdrawal headache this morning. Time and some peppermint oil seem to be easing the headache somewhat. Heartburn twice today – don’t know what’s causing it. “Rock” in my stomach all day.

Foods eliminated to date: Dairy, Coffee, Legumes, Seeds.

Food:

4 pork sausage, 2 eggs, EVOO, salt

popcorn, coconut oil, salt, nutritional yeast (hummmmm, is that legal?)

chocolate chips

corn on the cob with salt, baked chicken, rice, chicken broth

Liquid:

12 oz ginger tea

36 oz H2O with 1/4 cup black cherry juice

Sleep: 8-6 (pee at 4) woke to the sun

Stats for the day:

Balls of feet swollen – 2

Hands stiff – 2

Back is stiff, other joints behaving

morning- itchy ear canals, stuffy right sinus, nostril

Weight: 184   Starting weight 182    2 pound gain overnight

Edema Treatment:

R2D2 – 1 hour left leg; 1 hour left arm

Exercise:

3 hour in garden, mulching, weeding, digging potatoes – 10 gallons of purple Peruvians – back happier than yesterday

Meds & Supplements:

LDN

Levothyroxine

Oral Sinus Probiotic

1 prescript-assist probiotic

Written by wovensongs

July 24, 2016 at 9:08 am

A new adventure

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I have a new doctor. She is an integrative medicine doc with a specialty in kidneys. Since I had a kidney stone last year that’s a plus. She understood all the things I wanted to discuss and I have great hopes that she may know something about these diseases that I don’t know. At least it will be less work to have a doc who is on board instead of having to teach/convince them.

Today I start on a new adventure… gradually moving into the auto immune protocol to see if we can determine if there are other foods that are exacerbating my abdominal and RA symptoms.

Today I’m switching from coffee to tea. Since I usually have 1-2 cups a day, I expect a major headache! I am also dairy free starting today.

Food:

5 ginger gum drops, throat coat tea, banana

Potato, pork chop, coconut oil, red pepper – I love coconut oil, but not so sure about potatoes heated in it. Maybe it will grow on me. Bye Bye Butter. Hummmm, now my tummy is bloating, and big burps.

Chicken tenders, red pepper, tomatoes, raspberries. All red, but yummy. Didn’t know raspberries were high in Oxalates – bye bye raspberries.

And now I have heartburn – so what caused that???? Tried Digize essential oil, that didn’t help, so took a Pepcid.

10 ginger gum drops, handful of chocolate chips and some peanuts. Just grazing while I hung out with the family.

Liquid:

16 oz tea. 24 oz H2O

Stats for the day:

Balls of feet swollen – 3

Hands and other joints behaving

I am a total of 8 inches bigger across the 25 points I measure than at my largest in 2010 when I was DX’d. The edema continues to be a major problem. 4 inches bigger than Feb this year. I weigh 8 pounds less than 2010 – 182.0. Time to get serious about the edema again.

morning- itchy ear canals, minor RLS, Stuffy left sinus, nostril

Weight: 182.0

Edema Treatment:

R2D2 – 1 hour left leg am; 1 hour right arm

Exercise:

1 hour in garden digging and washing potatoes in am. Back was stiff and complaining before I finished.

Meds & Supplements:

LDN

Levothyroxine

Oral Sinus Probiotic

Written by wovensongs

July 23, 2016 at 9:49 am

2015-2016 update

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My last post was dated February 2015.

In early March 2015, a kidney stone was lodged in my ureter and required laser surgery and two horrible weeks of pain before things turned around and headed in the right direction. I believed the doctors when they told me I’d be “good as new” in a couple of days after the laser – it was 2 weeks of the worst pain ever. Hope I never go there again. All tests since them show no stones and no indication of calcium oxalate in my urine. Hooray!

Other than that little adventure, my health has been pretty stable. The RA flares with the weather, it flares if I do too much and it flares if I get gluten zapped, otherwise I’m able to do normal activities.

My gut is pretty happy unless I get zapped. I still have abdominal bloating most days, mild discomfort with it, and systemic edema. Am not able to lose weight through dieting and exercise exacerbates the RA.

I had a bad RA flare (D’Quervaine’s tendinitis) in my right wrist in September, probably from too much weaving, and spent way too many hours in PT, Chiropractic and dry needle & regular acupuncture. 11 months later and most days I don’t even think about my wrist. The dry needling seemed to be what turned the trick. And he treated both wrists. The residual pain from the D’Quervaine’s in that wrist from 7 years ago has finally disappeared.

I also had a year of very occasional limping. It started slowly, with a limp on my first step on my right foot. Then a few weeks later it happened again, then again. One of those things that started out so innocuously that I didn’t really notice that it was getting more frequent and lasting longer each time it happened, until one day I was limping with every step, all day long. Hurried off to the PT, and she told me it was RA in the small bones in my foot. Lots of ultrasound and manual therapy for weeks and weeks, and I’m walking without a limp again. Next time something small happens, I need to remember to go to her first, rather than waiting to see if its going to go away on it’s own.

In the search for a new lymph massage therapist (it’s been two years since mine beloved therapist moved back to Holland) I discovered the Flexitouch machine – which does automated lymph drainage. My body responded well to it. The down side is that it takes two hours a day. The up side, my insurance company paid for the many thousand dollar machine. I got it near the end of 2015, then lost my momentum with the holidays and planning for my daughter’s wedding. Now I’m recommitting to the 2 hours a day to see if I can tame the edema beast. At least I can nap & who doesn’t need an extra 2 hours of napping each day! I have affectionally named it R2D2.

I’ve been on Low Dose Naltrexone for over a year now, and am finally sleeping. Usually, I sleep 4 hours, wake to use the bathroom, then sleep another 4 hours. Very occasionally, I will sleep through the night. It is an amazing experience after not sleeping for 20 years! I even have technicolor dreams.

My youngest daughter was married in May. that just leaves my son. It was a beautiful wedding in a small chapel with just family attending. A picnic reception in the park followed. I adore my new son in law (and my old one, too). Need to balance it out with a lovely daughter in law.

I’m still working, happily, and doing my art and raising chickens and a large garden, selling art, eggs, herbs and vegetables at the local farmer’s market on Saturdays. Life is good.

I’m ready to embark on another healing adventure to see if I can drive the RA and tummy issues further into remission. I’ve read both “The Paleo Approach, Reverse Autoimmune Disease and Heal Your Body”, by Sarah Ballantyne and “The Autoimmune Solution, Prevent and Reverse the Full Spectrum of Inflammatory Symptoms and Diseases” by Amy Myers. Both books recommend almost the same thing. And both reference the scientific literature they base their ideas on. I was actually following Ballantyne’s recommendations in 2015, when my kidney stone developed. That event derailed the entire experiment, and I never went back. Now that I have a new doctor who believes in alternative therapies and diet, I am excited to be back on this path and with a partner to cheer me on and keep me accountable! And maybe she even has some ideas I haven’t discovered.

 

 

 

 

Written by wovensongs

July 21, 2016 at 10:53 am

A New Beginning

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Over a year has passed since I blogged. Much has happened, much has stayed the same.

I had a horrible rash in January, which resulted in 5 days of bed rest on mega dose of prednisone. I gained 12 pounds, which I have yet to lose. We think the rash was related to the emu oil in the LDN. I stopped the LDN and all other drugs and supplements for 5 months, but eventually had to go back on levothyroxine.

The builders completed the bones of my studio in December; my wonderful family completed the interior, the soul. I moved into the space in February, 2014. I have always had a corner or a closet or a box somewhere in my home for my art; now I have a wonderful space that is all my own, and as a result my first gallery show is up at the O’More School of Design, in Franklin, TN.

I took a round of FMT pills, my Celiac symptoms have been milder since. The skin on my hands is about 90% better – maybe from the FMT, maybe from switching to nitrile gloves and eliminating latex reactive foods from my diet. May need to get tested for a latex allergy.

My lovely daughter was married in May, 2014. It took the whole tribe, friends and family, to choreograph this gluten free/egg free wedding on a shoe string budget. Housing a half dozen wedding guests and feeding 25 friends and family for 4 days, in addition to catering the rehearsal dinner and sit down wedding feast for 100 was an amazing feat. My daughter is very loved.

I had my first brush with cancer, a keratoacanthoma on my forearm. If one must have cancer, this is a very good one to have. It rarely metastasizes or invades. Treatment is removal. Very non-eventful.

The chickens are thriving, the cats purring, the parrot squawking, the garden suffered from wedding neglect, I survived the wedding extravaganza in spite of the RA.

Bursitis in my hip cause a month of limping, and took 7 months of PT to rehab.

My RA doc gave me the highest complement, saying she had learned so much from me!

My friend and fellow weaver lived with Leukemia for 5 months, and then passed away easily and peacefully in her home. She was only 61, and planning to retire on her 62 birthday. She left a large hole in my heart and life.

My very best friend has suffered with his own health demons for almost a year.

My PCP left the field of primary care to enter the mental health field. I may need her services because I’m going crazy trying to find a new PCP.

Tomorrow, I start the Auto Immune Protocol of the Paleo Diet. I am determined to find a way to heal my body from the Celiac Disease, the Hashimoto’s and the RA. I am so much better than 5 years ago, I’ve come far, now I want to finish the journey and become a healthy person.

2/28/2015

Written by wovensongs

February 21, 2015 at 11:46 am

Studio day 2 LDN day 8

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May son is adding a larger chicken coop to the back of the existing coop. Half the chickens slept outside, in the enclosed run all spring/summer/fall. Since temps in the low 20s were predicted last night, the new coop was quickly/temporarily screwed together. After the chickens settled in for the night, DD1 carried them from their outside perches and settled them into the new space where they could be cozy and warm. When all were inside, my son screwed the coop side shut.

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This morning, when I let the chickens out, only a few came through the door – the ones who were in the old coop.

The ones in the new coop didn’t have a clue how to get out. They were raising quite a ruckus and I had to find a screwdriver to open the side and let them out.

 

 

Here’s the door they should have gone through, into the old coop, and out into the world. I hope they get smarter today!

IMG_1350

 

 

 

 

 

 

 

 

The studio begins to take shape:

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Health & LDN:

Sleep: woke twice, turned over and back to sleep. No LDN dreams.

Weight 175.0, balls of feet 1, all else normal. No flare with front that moved in. We had snow and rain last night. Burrrr.

Written by wovensongs

November 13, 2013 at 8:27 am

LDN day 7

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Day 1 – breaking ground on the new studio! This is the top of the drive, looking towards where the studio will be. Backhoe on right, chicken coop on left – the back of the studio will be just to the left of the backhoe, in front of the trees.

IMG_1348

 

 

 

 

 

 

 

And one of my current works:

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Once the studio is built and I’m moved in, I hope to offer classes again. To have a place of my own, with all my materials and inspirations and books around will be a true delight.

Health & LDN:

Sleep: woke twice, turned over and back to sleep – normal, woke again early am with “stuff of life” on my mind, thought about it for 1/2 hour, then back to sleep – also normal. Only one image – a wedding band – DD1 and FSIL have been looking and talking about rings for a few days – so no surprise there. So, again, no LDN vivid dreams – drat!

Weight 174.4, balls of feet 1, all else normal. No flare with front that moved in.

Written by wovensongs

November 12, 2013 at 8:21 am

LDN day 6

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Upped the dose to 2 mg last night. Slept normally – awake once when the raccoon family visited and tried to get into the chicken feed. Soon the coop addition will be done, and the feed will be locked away in its own storage place. No more mid-night marauding!

Only dream I remember was a snatch of an image of a woman in a red dress (no surprise there since the book I just finished was “The Witness Wore Red”. She did have an interesting hat that was a giant mushroom, in beautiful tans and muted mossy greens – so not sure the “vivid dreams” part of LDN applies.

Weight 173.7 all else baseline and healing slowly. There’s a front on its way, so will be interesting to see if I flare.

Written by wovensongs

November 11, 2013 at 8:28 am

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