heartsongs

Weaving my way around Rheumatoid Arthritis.

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!

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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.

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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

Low Dose Naltrexone (LDN)

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In the ongoing search to find a way to improve my health – I’ve connected with a gastroenterologist who does Fecal Microbiota Transplants (FMT). He suggested that I try LDN for a few weeks before I try the FMT.

I am now on day 5 of 1 mg of Naltrexone. So far, no responses, positive or negative. I was looking forward to the “vivid dreams” that most people report, but alas I slept dreamlessly! Maybe I’ve slept better the past 5 nights, it is really difficult to tell, since my sleep is sporadic – sometimes good, sometimes ok, seldom great, but also seldom awful any more.

Tonight I’ll up the dose to 2 mg and see what happens!

Although I’ve not found any clinical studies that indicate LDN for Celiac, Hashimoto’s or RA, there are many anecdotal accounts that indicate it may help to treat the symptoms and help me heal. And the potential side effects are minimal.

In general, my health is steady. RA is only flaring in a minor way as the fronts move in and out. Edema is getting better – I’ve been scheduling lymph drainage massage as time and money and therapist availability allows, and that helps me stay in a steady state.

Hands are healing, slowly. When I get a gluten zap, I get new blisters, but they are healing faster. Maybe all the vitamins are helping.

I’m taking D3, C, B12, Probiotic, and Glutamine – working with an MD/Nutritionist. See her next week for more blood work.

Weight today 174.4. All joints at baseline 0.5. All edema at baseline. Fingers – 3 healed, 1 with scabs/sores, 6 dry & peeling.

 

 

Written by wovensongs

November 10, 2013 at 12:01 pm

Just health data

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Health Stuff Monday:

Woke frozen and in the middle of a hot flash – cruel to be unable to toss off the covers. Yesterday was a beast of a day. Woke with blisters on most fingers, afternoon had blisters on back around one hive spot, the last night had blisters on inner thing, again near hive spot. ICKY stuff, these blisters.

Balls of feet around a 1 and hands a .5

Edema: feel a little more swollen and stiff everywhere.

I have that “getting a bladder infection” feeling of irritation, which never turns into anything they can measure with their tests

Tummy – size 4 beach ball – same as the last few days

Weight this am –  170.7 – that’s good, in the right direction again

DH: 3 fingers with normal skin, 0 cracked, 5 scaby, 7 dry &  3 swollen around nails – in spite of the new blisters, my hands are still looking better this morning, they are healing faster from the blisters.

Hives improving, not as itchy or as raised

The itchy head neck bumps flared yesterday, as well. Less itchy today

The spot on my right ankle still healing. blisters on left knee scabby, but healing

PVC all day yesterday – they seem to go with the gluten – keeping this extensive log is helping me understand some of this

Neuro symptoms: some tremors yesterday, minor

Eye flashes quiet

Hot flashes this am

RLS quiet

Sleep: woke once, right back to sleep

Yesterday I ate: raw apple, coffee, cream, sugar, banana, eggs, salsa, raw pepper from garden,  tomatoes from garden, pork, spinach, more coffee

So, I sort of stayed true – added spinach, but also pepper and tomato. I want to add raw vegetables, unwashed from my garden, to try and introduce more good gut bacteria. Gardening is almost over for the year, so it seemed prudent.

 Saturday is a blur – gluten gotcha

Health Stuff Friday:

Woke feeling great after sleeping all night for the second night. Appears it takes a whole week for the gluten symptoms to abate.

Balls of feet around a 1 and hands a .5

Edema: better than yesterday. I have knee caps again (1/2). Right hip better.

Tummy – flatish

Weight this am –  171.8 – oh dear going up 2 days in a row

DH: 3 fingers with normal skin, 0 cracked, 1 scaby, 7 dry &  3 swollen around nails – overall, better than yesterday, still swollen

Hives improving

The itchy bumps head neck bumps fading

The spot on my right ankle still healing.

PVCs quiet

Neuro symptoms: quiet

Eye flashes quiet

Hot flashes quiet

RLS quiet

Slept all night, for second night!

Yesterday I ate: raw apple, coffee, cream, sugar, chicken broth, carrots,  chicken, jello, popcorn & butter, cheese, more coffee

Today is day four coffee countdown – need a new approach to the coffee, cause I really don’t want to ditch it – but think I should give the no dairy, no sugar a fair try.

Health Stuff Thursday:

Balls of feet around a 2 and hands a 1.5

Edema: Right hip better. Edema is worse than yesterday – I made an appointment with a new lymph therapist for tomorrow.

Tummy – flatish – better than yesterday.

Weight this am –  171.6 – yoyo

DH: 3 fingers with normal skin, 0 cracked, 5 scaby, 7 dry &  3 swollen around nails – hands much worse today – very dry and swollen

Hive improving slowly.

The itchy bumps  on my neck and scalp forehead and neck down to my clavicle – less itchy

The spot on my right ankle still healing.

PVCS at bed time, during the night, and this morning

Neuro symptoms: woke with sleep paralysis, once. Yesterday, driving to baskets, I had pill rolling in my left hand. When I gripped the steering wheel tighter, I had arm tremor. Put my hand in my lap, more tremor. Ugh.

Eye flashes this am. Last night, coming back from baskets, the lights all had halos, as they normally do. But they also had long vertical “spot lights” top and bottom. Very strange and distracting.

Hot flashes quiet.

RLS quiet.

Slept all night

Yesterday I ate: raw apple, coffee, cream, sugar, chicken broth, carrots,  chicken, affogato, squash, more coffee

Today is day three countdown – need a new approach to the coffee, cause I really don’t want to ditch it.

Health Stuff Wednesday:

Balls of feet around a 2 and hands a 1.5 – left baby finger and thumb sore, hands weak.

Edema: Right hip still a water balloon. Edema is receding. I have shins – left 1/2 way to knee, right a couple inches more. I have bones in my knee caps – about 1/2 each side. Bulges under arms are flat this morning. Hands and finger almost normal.

Tummy – flatish – better than yesterday.

Weight this am –  170.1 smile

DH: 3 fingers with normal skin, 0 cracked, 5 scaby, 7 dry &  3 swollen around nails – and less swollen than yesterday, still improving. Two blisters on knee improving.

Had a dozen new hives on my right thigh yesterday, for about 12 hours. Then they disappeared. The 5 on my torso are less raised.

My throat is sore this morning.

The itchy bumps  on my neck and scalp forehead and neck down to my clavicle – still itchy, but maybe a little better.

The spot on my right ankle finally looks like it’s healing.

PVCS at bed time

Neuro symptoms: woke with sleep paralysis, several times this am, at least three. Sometimes I can “break” it by trying to twitch my nose. That didn’t work this morning. I heard Josh come down the hall, open the cupboard and fridge, pour his cereal, move a chair. Then my head started shaking, then my left leg, then everything froze again, then I could move my arms and a second later, my whole body. It was the weirdest ever, and disturbing.

Eye flashes.

Hot flashes quiet.

RLS quiet.

Awake for 2 hours in the middle of the night.

Yesterday I ate: raw apple, coffee, cream, sugar, chicken broth, carrots,  chicken, banana.

Today is day two countdown – only one cup of coffee yesterday, in the evening to chase the headache.

Health Stuff Tuesday:

Balls of feet around a .5 and hands good today

Right hip still a water balloon

Tummy – flat at last

Weight this am –  170.1 – a new low

DH: 3 fingers with normal skin, 0 cracked, 5 scaby, 7 dry &  3 swollen around nails –  still better overall  – glad something is improving.

Hives on my chest in three places , and two on my back.

DH blisters in two places on my left knee, also new. And an itchy spot on my left ankle.

The itchy bumps that have been on my neck and scalp for weeks are active again, and now cover all my scalp, forehead and neck down to my clavicle – such fun to itch everywhere.

The spot on my right ankle finally looks like it’s healing.

PVCS at bed time

Neuro symptoms in the evening, twitches in left arm, right leg, head and toe curls in both feet

Eye flashes quiet.

Hot flashes quiet.

RLS quiet.

Yesterday I ate: raw apple, coffee, cream, sugar, beef broth, carrots,  beef, grape jello, affogato, popcorn, salt.

Today is day countdown to day one – first the coffee, cream and sugar have to go.

Written by wovensongs

October 7, 2013 at 6:20 am

Turn stumbling blocks into stepping-stones

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Three weeks on the SCD/GAPS elimination diet. I figure I’ve been doing it at somewhere between 80 and 90 percent. I never managed to ditch the coffee/cream/sugar & I’ve had ice cream several times, popcorn twice, corn chips once and two lollipops – which I burped for half an hour. For the most part, I’ve been successful. My tummy has been flat for most of the 3 weeks, I’ve had less frequent and less severe gluten zaps, I’ve lost some of the edema weight, my hands are showing significant healing.

This week was the worst – I got sloppy – I had those lollipops on Wednesday, then popcorn on Thursday, Ice Cream, Corn Chips – gluten zaps makes you really hungry for something. Yesterday I cooked beef soup for the week and made candied ginger because the new crop is in the market, and I make enough for the year. And I was still feeling brain foggy from the last gluten zap – I was on day four of the pear sauce, and planned on trying paprika on my chicken. Then I tasted the candied ginger, too.  And ate one, only one, of the toasted squash seeds.

And immediately after dinner – beach ball belly (BBB) – AND the tiny men with the pitch forks moved in. I can’t remember when they last made a visit – a year ago? maybe 2? This time, they stayed all night, doing their gymnastics in my belly. I also had a return of neuro twitches and toe curls, which have been quiet for some time.

This morning, the men and their pitchforks have  moved on. Still have BBB, still having some twitches, am starting to feel human again.

Only I don’t know what caused all this – was it the pear sauce kicking in on the 4th day? Was it the paprika? Was it the ginger? These are two things we use often, so I thought they would be ok. Was it the corn chips from the day before? So, now I have BBB and a sleepless night of pain, and know NOTHING.

In seventh grade, my History teacher put a new quote on the board every day. He never would talk about the quotes, just put them there, every day for a whole year. They never related to anything we were studying, and covered the range of topics of life. I found that I spent most of each period puzzling over the quote. I’ve loved quotes ever since.

In the middle of the night, to try to keep my mind off the tiny pitch forks, I was doing some puzzles where you end with a quote, if you solve the puzzle correctly. Almost every puzzle I worked contained a message just for me:

“Every problem is a chance to do our best”

“A good scare can be a powerful teacher”

“Turn stumbling blocks into stepping-stones”

“Self discipline is the only real discipline”

So, now I’ve had three weeks of practice on this elimination diet. I know that it has helped me to start to heal. I know where my particular stumbling blocks lie. And I am starting over. Giving this a real chance. Giving it 100%.

Wish me well.

 

Health Stuff Monday:

Balls of feet around a .5 and hands good today

Right hip maybe improving?

Tummy – ah 9 months – if I could only deliver this baby and get done with it.

Weight this am – ugh, 170.8 lost 1.1 pounds since yesterday.

DH: I now have: 3 fingers with normal skin, 0 cracked, 1 scaby, 7 dry &  3 swollen around nails – so still seeing overall improvement.

Hives on my chest in three places – this is new.

DH blisters in two places on my left knee, also new. The spot on my right ankle finally looks like it’s healing.

PVCS at bed time & this am.

Neuro symptoms in the evening, watching TV, twitches in left arm, right leg, head and toe curls in both feet and major cramp in right toes. Sigh.

Eye flashes quiet.

Hot flashes quiet.

RLS quiet.

Yesterday I ate: raw apple, coffee, cream, sugar, chicken broth, carrots, chicken, beef, squash, paprika, ginger.

Today is day ONE – again.

 Health Stuff Sunday:

And the saga continues. Today I have the “foggy brain, wish the world would go away, hate my life, don’t want to do anything in spite of the fact that it’s a beautiful fall day” part of the gluten zap. On days like this, I need to either go away and hide in a cave or be super vigilant to not go down the spiraling sink hole that ends with me picking a fight with my DD1 or hating the world and everyone in it.

Balls of feet and hands good today – no noticeable swelling!

Right hip maybe improving?

Tummy flat again!

Weight this am – ugh, back to 171.9 – yet another part of the Gluten Zap roller coaster.

DH: I now have: 3 fingers with normal skin, 0 cracked, 1 scaby, 7 dry &  3 swollen around nails – so still seeing overall improvement.

PVCS at bed time & this am.

Neuro symptoms quiet!

Eye flashes quiet.

Hot flashes early am – GZ

RLS quiet.

Yesterday I ate:  carrots, broth,  pork, PEARSAUCE, coffee  C & S, corn chips and butternut squash.

Today is day four for pears – so far, so good! I’m adding spinach at dinner.

Health Stuff Saturday:

Wednesday I had a yummy earth lollypop – I’ve eaten bags of them before  with no problem- this time I burped for 1/2 hour – great huge burps. Thursday morning I woke with two of the deep sore blisters, but no little ones, crusty eyes and nose. Friday evening I had the dreaded “D” and restless legs. If it was the lollypop, that means my timeline is shorter than I thought. Or it wasn’t gluten, but the citric acid I reacted to. Or my symptoms are changing. Or.

Balls of feet and hands good today – no noticeable swelling!

Right hip still a ball of fluid, makes sitting unpleasant. Tops of legs bulging again, below right knee. Need to get myself back to a lymph therapist.

Tummy flat again!

Weight this am ???

DH: I now have: 3 fingers with normal skin, 0 cracked, 0 scabs, 7 dry &   1 peeling, 3 swollen around nails – so still seeing overall improvement.

PVCS quiet

Neuro symptoms quiet!

Eye flashes quiet.

Hot flashes quiet

RLS Friday evening.

Yesterday I ate:  carrots, broth, jello,  pork, PEARSAUCE, coffee  C & S, popcorn w/ butter & affogato – oh my!

Today is day three for pears – so far, so good!

Health Stuff Friday:

Balls of feet and hands good today – no noticeable swelling!

Right hip still a ball of fluid, makes sitting unpleasant. Tops of legs bulging again, below right knee.

Tummy flat again!

Weight this am 170.3 – down to another new post prednisone low :)

DH: I now have: 3 fingers with normal skin, 0 cracked, 0 scabs, 7 dry &   1 peeling, 3 swollen around nails – so still seeing overall improvement.

PVCS – a few at bedtime

Neuro symptoms quiet!

Eye flashes quiet.

Hot flashes and RLS quiet.

Yesterday I ate: chicken, APPLESAUCE, carrots, broth, jello, chicken sausages,  pork, PEARSAUCE, coffee  C & S –  :)

Today is day two for pears – so far, so good!

Health Stuff Thursday:

Balls of feet are a .5, hands a little stiff.  Neck still creaking, maybe a little less

Right hip still a ball of fluid, makes sitting unpleasant. Tops of legs bulging again, below right knee.

Tummy flat again!

Weight this am 171.3 – up .4 drat

DH: I now have: 3 fingers with normal skin, 2 cracked, 0 peeling with a scab, 7 dry &   1 peeling, 3 swollen around nails, and two new deep blisters in totally new places – what’s with that.

PVCS – a few at bedtime

Neuro symptoms: woke frozen again

Eye flashes quiet.

Hot flashes and RLS quiet.

Yesterday I ate: eggs, chicken, APPLESAUCE, carrots, broth jello, chicken sausages,  coffee  C & S – again :)

Today is day four for apples – so far, so good!

 

Written by wovensongs

September 30, 2013 at 7:55 am

Someone just like me

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I’ve recently re-joined my team after being co-located in another building for 18 months. We move people around a lot where I work. I met a co-worker yesterday. She sits one aisle over.  And she has Celiac and RA. We discovered each other over a birthday celebration where we both abstained from the cupcakes and then met for lunch and talked for two hours.

It’s the first time I’ve met someone with both CD and RA, and she has Hashimoto’s Thyroditis and Dermatitis Herpitiformis, too.

At first, I was really happy to meet her, have someone in person and close by to share this journey.

And then I was really sad for her – she is the same age as my oldest and has two young children. I can’t imagine going through this at her age and stage in life.

Let’s hope for a cure, soon.

Health Stuff Wednesday:

Balls of feet are a .5, hands a little stiff.  Neck still creaking, maybe a little less

Right hip still a ball of fluid, makes sitting unpleasant.

Tummy flat again!

Weight this am 170.9 – back to pre-gluten a week ago – now to make more progress

DH: I now have: 3 fingers with normal skin, 0 cracked, 0 peeling with a scab, 7 dry &  peeling, 3 swollen around nails. Better than Tuesday, still making progress

PVCS – a few at bedtime

Neuro symptoms: woke frozen again, twice in night

Eye flashes quiet.

Hot flashes and RLS quiet.

Yesterday I ate: eggs, chicken, APPLESAUCE, carrots, broth, affogato, coffee  C & S – again :)

Today is day three for apples – so far, so good!

Written by wovensongs

September 25, 2013 at 7:43 am

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