quick recap
Can’t believe it’s been over two months since I blogged. Life has been busy, and I haven’t been focused on tracking.
Some highlights from the past two months:
DD2 bought her first house, on the opposite coast. Many phone calls and texts back and forth, to offer guidance and support. She closed New Years Eve. I can’t wait to go and visit!
DS graduated from college! He worked full-time and went to school part-time, so it’s been a long time coming! Now the job hunt begins.
DD2 was here for a two-week visit. I guess it’s a testament to the strength of our relationship that we can go a year without seeing each other, and when we are back together, if feels like it’s only be a minute. She plans several visits this year, for weddings.
DD1 is thinking of a May wedding. Nothing definite yet, but conversations have begun. Something small and intimate.
I have one missing chicken – just disappeared into thin air and one who is lame in one foot. The others are doing well and still laying. Now that the days will be getting longer, the younger flock is acting like they will start laying soon.
DXH had a melanoma removed from his cheek, and is healing well. They said they got it in time. Still disconcerting to have another type of cancer after the prostrate two years ago.
Health:
I’ve had a cold for 2 months and am still coughing. ERG.
I’ve seen the neurologist, who has only one screwdriver, in one size. He has a very large Philips head screwdriver – my screw either is a very tiny Philips head or another type of screw altogether. His screwdriver wouldn’t work. His advice – go home and forget all about it. He was young and patronizing. Each of my symptoms could be caused by any number of other things – I understand that. But when you add them all up, they have to mean something and I’m not sure ignoring them until they get worse is the best course of action. Needless to say, he is no longer on my health team.
I’ve lost 7 of the 16 inches of edema gain. I’m getting lymph massage 2 times a week and acupuncture once a week. The scale is moving, very slowly, down 3 pounds. Prednisone is evil.
From an RA point of view, I am doing really well. I was on my feet cooking and doing all day Christmas eve and Christmas day, and only had a tiny edge of a backache by the end of the day. I am noticing the winter storms as they roll in and out, with their 20 and 30 degree temperature changes, but with only mild aches, nothing an hour on the couch doesn’t fix. Usually a nap and I’m good to go for the rest of the day. Certainly nothing I would call a flare. Much better than this time last year.
My hands are healing. I’ve not taken any more prednisone and have reduced the cortisone to less than once a week. I’ve had blisters only twice in the past 2 months. Four knuckles are still cracking and dry, the skin on one hand has a dry patch. I’d say I’m about 90% better.
I’ve switched to Tirosint – a certified gluten-free thyroid medication that comes in factory sealed blister packs – so no chance of cross contamination at the pharmacy when they count the pills in trays that don’t get cleaned between orders. I’m also taking a vitamin D that appears gluten-free. I still have “need a nap syndrome” around 4 each day.
I’m eating meat, eggs, some fruit and vegetables, one cup of coffee with cream and sugar, rice or potato. Pretty simple stuff. And testing anything new we want to eat. The gluten tox tests cost about $15 for one test, so it certainly increases my food costs. Maybe in the long run, it will decrease my medical bills and be worth it.
Trying to lose the coffee once again. I’ve looked back at my posts, and this has been a recurring theme for the past two years. Get off the coffee, which is the only dairy and sugar I eat regularly, to see if either of those is adding to the weight/edema/ra or anything else.
The nerve symptoms continue. The past few days I’ve woken with the sleep paralysis thing. Once this week I tripped over my left foot. The trembles I’m dealing with by getting up and moving when they start. Which doesn’t mean I’m not having them, just that they go away when I move. No noticeable change in my smell/taste. Still have the strange throat rattle when resting on my back – so I don’t. Unless these things get worse, there is no way to dx. So it is wait and see.
I had 4 moles removed – the last ones I have. All are healing. One is on the instep of my right foot, so I’ve limped around for the past 5 days. The poor chicken and I are a matched set. we both need epsom salt soaks!
FODMAP starts today.
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.
A new adventure
Today is Wednesday – only I’ve skipped a whole week of tracking my symptoms. Strangely, the entry below, for last Tuesday, could pass for yesterday’s entry.
My left arm is better, it’s been sore for two weeks, gets some better every day. Still sore in the shoulder area, still weak, but generally still improving. I’ve had two chiro appointments, one acupuncture and one PT all aimed at helping it, plus daily self massage and stretching. It’s a long, slow process. PCP said it sounds like fibromyalgia – that’s just another name for inflammation. Wonder why it moved from my joints to my tendons and muscles?
Hands are better, in spite of another gluten zap on the weekend. DD1 is doing gluten testing today on the suspects. No prednisone this time, just a couple of days of cortisone. Still some dry knuckles, but blisters and cracks are gone for now.
Strangely, the RA is in total remission – maybe the prednisone??? Happy joints – I’ll take it!
Edema is still awful – I’m feeling like a sausage again. My biggest pants are tight and uncomfortable. I haven’t been on the scale in three days, because I dread seeing the number. Last time I looked, I’d gained 10 pounds in a month. PCP says that’s the prednisone.
Saw the PCP Friday. She did blood work for my thyroid. All came back great, so we’re going to switch me to the gluten-free version of levothyroxine, but stay with the same dose. That’s good news. (and she agreed to order a factory sealed bottle, so that the issue of cross contamination in the pharmacy is avoided.)
And she wants me to see a neurologist. She thinks the many symptoms are looking more and more like PD and that there are non pharmaceutical things that I can be doing to help. I’ve noticed, for a couple of months, that I’ve had difficulty getting my VFFs on in the morning. My toes seem to be curling – I chalked it up to the RA getting worse in my toes. Several times, I’ve also noticed that my toes were doing a little dance as I sat and used the computer or read a book. Not tremors, like I see in my arms and legs, more like making a fist and relaxing it, over and over, only in my toes. First time, I just watched in amazement, next few times I sighed and got up and walked around – it stops when I use my feet, next time I searched the internet for foot cramps/toe cramps/toe curls – and guess what – yep – PD symptom. Another thing I’ve been noticing over the past few weeks is that my back is tight and achy when I wake up. Also attributed that to the RA, and spend the first 15-20 minutes each morning doing gentle stretches. The reading I’ve done this week indicate it could also be part of PD. I have partial loss of sense of smell and taste, arm, leg, neck and finger tremors when resting, toe curls, back ache, early morning sleep paralysis, left drop foot, the white matter lesions they found in my brain when they did the smell/taste tests last winter, RLS, fatigue, trouble sleeping, daytime sleepiness and, apparently, my face is looking asymmetrical – sort of droopy on the left side. Lots of strange symptoms – some can be attributed to RA and some to Hashimoto’s, but all can also point to PD.
Maybe it is time to give it a name. And then figure out how to make friends with this new part of me. It’s a new adventure.
Tuesday
Woke to the funny freezing thing. Had tremors in my left arm driving home.
Left arm, biceps attachments still tender, arm weak, elbow weak. Maybe a little better than yesterday, but the soreness goes around to my shoulder now.
One new crack, no new blisters, the cortisone is working. Still some dryness and peeling, but making progress.
Hand stiffness – maybe a .5 or less
Right shoulder-blade – less sore
Balls of feet – my normal
Joints all seem good, better than my normal
Back a little stiff
Neck crinkly
Eyes – no flashes this am
Tummy soft and flat
Edema – stable
Weight – 172.1 (down 1.6 form new high of 173.7, up 7.6 from June 164.5) Had acupuncture last night, maybe that accounts for the weight loss.
Bristol – 4
Monday 6:30 am
So, most things are better today – including my spirits – is that the prednisone?
Left arm, biceps attachments still tender, forearm tender, weak, elbow weak. Not using my left hand for much. Just need to let it rest and protect it.
A few new deep blisters, but the prednisone and cortisone stopped the hand flare. Color is good, little redness. No new little blisters, some dry spots, no cracks, only new blisters are itchy. Maybe once they are completely healed, a small gluten zap won’t cause such chaos.
Hand stiffness – maybe a .5 or less
Right shoulder-blade – better
Right knee better
Balls of feet – better -1
Joints all seem good, better than my normal
Back ok
Neck crinkly
Eyes – no flashes this am
Tummy soft and flat
Edema – stable
Weight – 173.7 (new high of 173.7, up 9,2 from June 164.5) – the weigh gain seems to follow the prednisone and the gluten – erg.
Bristol – 4
Sunday 6:30 am
Left arm, biceps attachments still tender, all other tenderness gone
Hand stiffness – maybe a .5 or less
Right shoulder-blade – still sore
Right knee burning – guess it didn’t like hiking
Balls of feet – still swollen – normal 2
Toes of both feet – doing the cramping twitchy thing, right baby toe swollen
Joints all seem good, better than my normal – gotta love the prednisone
Only twitches this am are the toe things
Back normal stiffness
Neck crinkly
Couple of head twitches as I’m sitting here thinking
Eyes – no flashes this am (note: they have been flashing almost every am for at least a month)
Tummy soft and flat – no bloat – that worrisome lymph node still swollen on right, but smaller, maybe marble sized – have to remember to ask Alma about it next week.
Edema – stable
Weight – 172.9 (down 0.6 from high of 173.5, up 6.4 from June 164.5)
Bristol – 4
Edema weekly check: Since June, I’ve gained 8.75 inches, evenly distributed across my body, along with the 9 pound weight gain. EDEMA. UGH.
A new chapter
Sunday September 23, 2012
I’ve lost over a week, as far as recording my detailed symptoms – but I’ve traced back and done a synopsis below.
Gluten does that – besides the physical symptoms, I get despondent, grumpy, withdrawn, angry, tired and it takes all my energy just to get to work & keep up the minimal amount of home stuff.
The past two weeks have been hard. DD1 and DXH were in Portland visiting DD2 for a week, which meant more responsibilities for me. DD1 had a nasty cold for a week before they left, which also meant more responsibilities for me. DS came down with the same cold, only his turned into an ear infection and pneumonia by Monday, which meant even more responsibility on my shoulders. He’s usually my rock.
The cat was spayed, and pulled her stitches out, which meant another trip to the vet for staples, antibiotics twice a day, a collar to keep her from licking herself, which means hand feeding her, since she hasn’t figure out how to eat with the collar, and keeping her inside and supervised.
All the other critters are doing fine. The chickens are not only giving me 4 eggs a day now, but proving to be some of the best therapy around. They are funny and love everybody (people = food). They come running when they see you. Twelve chickens clucking and flapping their wings and running full tilt across the yard – my own comic skit every time I walk out the door. They follow me everywhere. I have to scatter a hand full of sunflower seeds in the yard to distract them so I can go for a walk, or get in the car!
Yesterday, after setting up my booth at the farmer’s market, I was standing and talking with a friend, holding my coffee cup in my right hand, sipping my coffee, my left hand at my side, when the trembling began. My left hand/arm did its little dance for a few minutes. I finally put my hand in my pocket to disguise the trembling. Then my right hand decided to join the party – and now I know a new way to add froth to my morning cup-pa!
This is the first time that I’ve experienced the trembling when standing. It used to only happen when I was lying down – relaxing, reading a book, watching TV. The past few weeks, it has happened a few times while I was sitting. And now while standing. Not a good thing.
Mid morning, my friend, PT2 came along. We chatted about my art work, which she had never seen, and then she asked me how I was. (I haven’t seen her in several weeks – just too busy, and she left the practice where she was insurance billable, and opened a private practice, where she is not insurance billable.)
Now, normally, I don’t tell people how I am. For the most part, I keep a stiff upper lip and a positive attitude, and don’t share. But I’ve seen PT2 since right after the RA dx, weekly for almost a year, and then less often this past year. She knows all my symptoms. So, I told her what had just happened with the trembling, and then I burst into tears. Not my style at all.
She was an angel, and just the right person to talk to. I’ve been coasting the last few weeks, knowing that I needed to come up with a new plan, but not really making any decisions. Reading and thinking and worrying, but not really changing anything. So, now it’s three am, I spent the rest of Saturday going for a long walk and then doing research, slept for a couple of hours, and typed this review and now I’m off to sleep and will wake tomorrow with a plan.
On to the next chapter in this saga.
___________________________
Saturday, Sept 22: woke with new blisters on fingers – took a prednisone. I just can’t face having my hands get worse again. The dermatologist said she’d like to see me get to the point where I used the prednisone and cortisone only for flares, but once a month or less – now it looks like once a week. I see her again in 6 weeks, when we will re-evaluate, based on how I’ve done. I had tapered off the cortisone this week, and was only using the moisturizer, until yesterday. Sigh.
Friday, Sept 21: just another day at work. “D” today – and I don’t even know what I ate yesterday.
Thursday, Sept 20: Finally saw the chrio on Thursday evening. She did gentle adjustments, tens, and light massage. That seemed to help, and my arm is some better, still not right, but better. Today was DD2s birthday. She is on the west coast, and I miss her, immensely. DD2 and DSIL left for a long weekend – wedding to attend.
Wednesday Sept 19: Woke with inflamed tendons in my right wrist and inflamed tendons and tender lymph nodes from my wrist to my axillary on my left arm. Iced and did lymph massage and babied that hand & arm. Had all day meetings on Wednesday & Thursday, lots of time at the computer, and “dinner” out with the work crew on Wednesday night. I didn’t eat, just had sparkling water. I enjoyed getting to know the folks from out-of-town, but it meant I missed my Wed night with my gal friends, and I needed them this week. It was, however, the first time I’ve gone “out to eat” with folks and felt OK about not eating. Since I can’t smell the food, and the company was fun and funny, and I ate before I left, so I wasn’t hungry, it actually was a fun evening.
Tuesday Sept 18: I had a big fight with DD1 and another with DXH, and I don’t usually fight with anyone. Bad case of the gluten grumps.
Monday Sept 17: Blisters & one new crack. DD1 and DS both had “D” yesterday, and woke with new hives. So, we traced it to the beef, which I had bought at a different store. Drat. I HATE GLUTEN.
Sunday Sept 16: “D”
Saturday Sept 17: Family dinner. First one in a week. Between people being sick and busy work and travel schedules, we’ve been eating catch as catch can – with lots of chicken soup and eggs and left overs.
Friday Sept 14:
weight 172.3 – down 1.2.
Saw dermatologist for follow-up. She gave me a new scripts for a moisturizer and a protector, wants me to taper off the cortisone, unless I flare again. Hands are looking good, still some spots on fingers, but better than yesterday. She said it takes a month after my hands look healed for them to be completely healed at the cellular level, and they don’t look healed yet.
Joints all about the same, edema the same. Had acupuncture again yesterday, hoping that will help the edema.
Thursday Sept 13:
weight up again 173.5 – haven’t seen that number in over a year – so the prednisone is my enemy now.
hands are better no new blisters, so healing again
joints about the same, edema worse. Lymph gland under left arm swollen and tender, ball of left foot, left little toe, left knee, left arm all sore, even my jaw and my face are swollen on the left side. Sigh. Right shoulder girdle sore – too much time on the computer the last week.
Lots of freezing again when I wake up the past few days & some more trembling, now it happens when I’m sitting as well as when I’m laying down. It had gotten better, now worse. Sense of smell is about the same, a little better some days, then worse others. I hate this nerve involvement. It’s scarier than the RA, and that’s scary enough.
Seeing the acupuncturist today, and the lymph therapist on Saturday. Maybe we can slow this train wreck.
Wednesday Sept 12:
Hands are improving, no prednisone today, no new blisters, everything a little better.
Tuesday Sept 11:
Lost Tuesday when Safari crashed. Have to remember to save the drafts!
Hands are about the same as Monday – blisters on fingers are drying up, knuckles have some cracks and are dry, backs of hands are still healing – no new blisters, except between finger and thumb of left hand, color is back to normal, skin is soft and smooth, so I’m just dealing with the fingers, which is an immense improvement. Took one prednisone (10 mg) and using the ointment.
Joints are behaving – guess my body is busy attaching my hands instead of my joints.
Edema is about the same. Weight up to 172.3c
No idea what I ate on Monday.
Monday Sept 10, am:
Hand report:
D*** D*** D*** D*** – woke with dozens of new blisters scattered over 7 fingers, one new crack. backs of hands are fine so far. Fingers are itchy. So, I’m very suspicious of the peanut butter cup I ate Saturday. They are supposed to be gluten-free, but I’ve over indulged in them the last few months, and my hands have been really bad, so maybe that’s the culprit. They don’t fit in the FODMAP diet, anyway, so that’s one more potential problem I don’t have to figure out.
Still healing: less red, less swollen, less leathery, less puffy, some dryness on knuckles, new deep blisters, new tiny blisters, one new crack, new itchiness.
All Healed: , no peeling skin. Still using the cortisone ointment 1 x a day. Took 10 mg of prednisone this am to see if it’s enough to knock this back fast.
Joints - maybe a 1.5 in feet and hands this am. A little less stiff than normal, but not stumbling around stiff. Neck a little crinkly, lower back and shoulder a bit stiff this am.
Edema: no noticeable change.
Weight: 172.2
Sunday I ate: 2 eggs, butter, pork chop (paprika, salt) bacon, 1/4 cup applesauce (sugar, cinnamon),basil, tomatoes, chicken broth (scallion tops, carrots, tomatoes, celery), 1/2 c coffee & sugar (no cream)
1pm – tummy bloated, lots of burps and feeling sleepy – so is this the corn I ate yesterday that is finally hitting my large intestine & causing the bloat? or is this the food I just ate? Or is this the peanut butter cup I ate on Saturday?
3:00 pop corn with butter & nutritional yeast & salt & now my tummy feels fine. Hmmmmm, Applesauce (sugar, cinnamon), another 1/2 cup coffee, sugar, cream and that’s all
The Gorilla on my Shoulders
Sunday – a new beginning.
The FODMAPs diet book arrive yesterday. I read it cover to cover, taking notes as I went. I’m pinning a lot of hopes on this new approach helping to solve the mystery that is my digestive track.
When the Celiac and RA were first diagnosed, the radical changes in my diet brought about a 20 pound weight loss and 46.876 total inches lost between June 2010 and Sept 2011. Since then, things have slipped dramatically. I’ve managed to keep my weight about the same, within a 2 pound window, but the inches have crept back. I am now 23.88 inches bigger than a year ago. This seems to be distributed evenly across my body – more edema everywhere.
When I first was diagnosed with RA, I was corresponding with a scientist blogger who gave me some advice about food and elimination diets. His comments, as I remember them: find the foods that don’t exacerbate the symptoms and live on those – one could live on egg yolks if one had to – how big is the gorilla on your shoulders?
At that time, I did a 4 day fast, consuming water only, and then added foods back one at a time. I never did figure out foods (besides gluten and MSG) that caused my symptoms. Since they, I have done other traditional elimination diets, adding foods back one at a time, again with no new information gathered, except that zero carbs allows me to lose weight/edema. So, I’m going to try FODMAP and if that doesn’t work I’ll go to zero carbs. There has to be a solution in the food somewhere. The gorilla has gotten bigger – maybe I can make him cute and cuddly once again.
Joints - 1 in balls of feet & NOTHING in hands – no stiffness or aches this morning! Neck a little crinkly, lower back and shoulder a bit stiff this am.
Hand report:
Still healing: less red, less swollen, less leathery, less puffy, some dryness on knuckles, new deep blisters and new little blisters Saturday and Sunday - sigh – but maybe this gives me a time line – “D” all day Wednesday & blisters on Saturday & Sunday
All Healed: not itchy, no new cracks, no peeling skin. Still using the cortisone ointment 1 x a day.
Yesterday I ate: coffee, cream, sugar, corn & butter, pork chop, banana, peanut butter cup
Some Progress
Wednesday – Taking the day off, have an airport run to do this afternoon – makes for a strange work week – 3 day weekend, work one day, day off, work two days & it’s the weekend again! I could get used to this.
Hands continue to improve.
Edema is steady/my normal.
Joints are same as yesterday, maybe a s in balls of feet & NOTHING in hands – no stiffness or aches this morning! Neck a little crinkly, back and shoulder a bit stiff this am.
Hand report:
Still healing: less red, less swollen, less leathery, less puffy, one new deep blister – sigh
All Healed: not itchy, not dry, no new little blisters, no new cracks, no peeling skin.
Had the Dreaded “D” yesterday at work, and heartburn in the middle of the night.
Yesterday I ate: coffee, ice cream (yes my go to food – have to fix that), eggs & mayo & butter. Roast, carrots, celery, onions, potatoes, butter, cream. DS cooked & I hadn’t read him in to my new diet plans, so onions.
Tuesday:
Hands continue to improve – no prednisone & no upset tummy
Second set of storms – more edema. Had lymph massage on Saturday & acupuncture on Monday and yet my weight is up to 171.9 this morning. I’m so tired of this.
Joints are a little happier than yesterday, maybe a s in balls of feet & NOTHING in hands – no stiffness or aches this morning! Neck a little crinkly, back and shoulder are happy again.
Hand report: less red, less swollen, less dry, less leathery, less puffy, not itchy, no new little blisters, no new cracks and no new deep blisters. So, that is going well.
Guess, other than the weight gain, everything is either stable or better than yesterday.
Monday I ate: chicken heart/liver in butter, soup (chicken, broth, carrot, celery, tomato, scallion tops), 1/2 cup coffee w/ sugar, banana, orange, 4 deviled eggs (eggs, FODMAP mayo & butter), 1/2 cup coffee w/ cream & sugar, more soup & eggs & 1/2 cup ice cream
Progress????
Happy Labor Day
Hands continue to improve – more slowly – I skipped the Prednisone yesterday. My tummy is feeling better this morning.
The hurricane remnants blew in last night, so my Edema is a little worse.
Joints are a little less happy than yesterday, maybe a 3 in balls of feet & 2.0 in hands. Neck a little more crinkly, with major pops, left shoulder-blade unhappy and all of my back stiff and achy.
Hand report: less red, less swollen, less dry, less leathery, less puffy, less itchy, no new little blisters – but three new cracks and one new deep blister. So, while my tummy is happy, my hands are making less progress in some places. I’ll see what today brings.
Yesterday I ate: fresh ginger tea with sugar, ribs, popcorn with butter, and then I stopped eating because my tummy was feeling worse and worse. After three days of upset tummy, I just needed to fast and skip the Prednisone and see what happens. Hopefully, not more of this.
