much to my sjogren

splash

2009-07-21T13:48:00.000-07:00

And just like that, I was back. Six months later.

I was sitting outside in the sun just now, trying to give myself the pep talk I need right now. The house is quiet, with the kids away at camp during the day, and I was gearing up to paint my son's room. I wanted to paint today, but the pain in both my feet and hands is back and I'm finding it hard to ignore.

Hence the sitting in the sun, talking myself.

I forgot the comfort that comes from laying it out here, speaking the truth that doesn't come up in polite conversations. I know what comes next as I feel my coping skills waning. It is the panic, and the fears behind the panic - that the pain will take root and grow, making my life difficult to manage - that leave me paralyzed.

So I am waiting to paint another day, trying to decide if rest is called for or if being distracted would help.

But saying it here, helps.

Hips don't lie

2008-11-14T08:17:00.000-08:00

Oh, so you thought I'd write this post last Friday?

Me too.

But Friday ended up being my freak out day of doing mindless activities - namely searching for miniature bundt pans - after finding a lump in my left breast.

I saw the doctor last Tuesday and scheduled my first mammogram and I felt relatively calm about it.

Then it sank in, and all I could think about was how I took Imuran for a year.

So sitting down and writing because crazy-making behavior. I swore off google searching the hours away reading about breast cancer, and filled my weekend with so much activity, I never had time to seriously worry.

Good thing too, because it was nothing. I came away with a base mammogram/ultrasound but not a worry in the world.

Except for my hips.

The weather has changed and I have become a Granny action doll, complete with bum hip. (Sore shoulders sold separately.)

I've given Jazzercise a rest and have gone back to some gentle yoga in the mornings.

This new pain - that wakes me up at night - gives me new insight and sympathy for the elderly and their talk at nauseum about their joints.

Because when your hips hurt, it's hard to ignore.

Guest Post: Rosalind Joffe (privacy and disclosure and living with chronic illness)

2008-11-06T06:00:00.000-08:00

I wanted to know: How do you handle disclosing chronic illness, in the workplace and I guess, in your personal life as well. How much is too much and what is the responsible information an employer deserves to know?

I’ve lived with chronic illness for almost 30 years and I still find that disclosure isn’t simple. Let’s be clear. Disclosure means talking about something for the first time – in this case living with chronic illness. The on-going conversations about chronic illness aren’t necessarily easy. But I’ve found that the first conversation is often the hardest.

That’s why I suggest you consider the following when disclosing to a new friend or your supervisor: Be as public as you need to be and as private as you want to be.

This means that you don’t HAVE to talk about this with anyone unless it’s hurting you not to do so (“as you need”. And, you can say as MUCH or as LITTLE about it as you feel comfortable sharing (that’s where your sense of privacy should be considered).

If this seems overwhelming or is making you anxious, you can simplify the situation by asking:

• What do I hope to achieve – my desired outcomes -- by disclosing to this person?
• How could this information impact my relationship with this person/people?
• What is the best time and place to say this?
• What does this person need to know for me to achieve my desired outcomes?

The last question leads to the heart of this issue: what do you want to say and what not to say.

Chronic illness is unpredictable and it creates a level of uncertainty for you and for others. Because work relationships are inevitably based on your performance, you want to assure this person that you’ve got the situation under control and your illness will not become a burden for anyone else.

Similarly, when you’re telling a new friend or someone whom you don’t know very well that you live with a chronic illness, start slowly so you don’t overwhelm the other person with information. I suggest keeping 3 things to keep in mind:

• Know the facts about the illness and stick to them.
• Talk about how this affects what you can do rather than vague descriptions of how it feels.
• Keep the conversation as unemotional as possible.

If you find this information useful, chapter 6 Talking About Your Chronic Illness of my book, Women, Work and Autoimmune Disease, Keep Working Girlfriend! describes the various situations you might find yourself in and offers more options to consider.

Living with chronic illness can be an isolating experience, particularly if you don’t share it with those around with you. But sometimes we can err on too much sharing and even our closest friends and allies will feel they’ve heard more than they want to know. It’s in your best interest to develop your sense of what is enough.

*****

Thanks, Rosalind! I will be back tomorrow to do my best Shakira impression, because my hips, they speak the truth.

Keep Working, Girlfriend blog tour

2008-11-05T06:44:00.000-08:00

I am fasting this morning for a big blood work up so of course, my tummy is rumbling ala Pooh Bear in protest.

Join me tomorrow as I welcome Rosalind Joffe of cicoach.com, and author of Keep Working, Girlfriend. You won't be disappointed.

(You can find the blog tour dates and locations by clicking the book above.)

back to normal

2008-09-22T18:29:00.001-07:00

My back finally started feeling better - am I so glad - and the aches and pains seemed to disappear as suddenly as they came on.

Story of my life.

I'm still working out, going to Jazzercise and taking several walks a week, and on most days, I can tell a difference in my energy levels.

I think squeezing in those workouts helps me deal with pain better, sleep sounder and generally feel happier. And hopefully, I'll be able to squeeze into some cuter (read: not MOM) jeans.

Fall is here and it's my favorite time of year...

(I posted a fairly healthy soup recipe over at Mama Milton, if you are so inclined now that the days are getting shorter.)

such a liar and woe to me

2008-09-05T12:08:00.000-07:00

Posting regularly again? Boy, I missed the boat there.

But school's back in session and I will see if I can manage two blogs again. I guess I won't make any promises.

My husband and I took a trip to Bermuda in August and we had a great time: No mid-flights cluster headaches, only some mild soreness and swollen ankles.

I was poised to hit the gym - Jazzercise, specifically - when I was struck down by the flu. Yes, no kidding, 104 degree temp, red eye, aching influenza. I guess it's flu season somewhere, and I brought it back with me.

What followed: Sinus infection, of course, and this ridiculous backache.

It's been nearly a month, and I can't shake it.

I've tried:

heat
baths
ice
topical creams
tennis balls
whining
sleeping on back
walks
tearful pleas for back rubs when my hubby's home
aerobics
muscle relaxers
complaining
magnesium
prayer
fish oil
epsom salt baths
OTC NSAIDS
prescription NSAIDS

*sigh*

Nothing seems to do it. Funny thing is: I'm pretty sure it originated from laying around so much. Or I picture a team of secret op virus strains crawling into my muscles and throwing one hell of a party.

So, I am tossing it out to you, dear readers. I'm a bad bad blogger, here on this site, but if for merciful heavens you have any advice, please. I'm begging...

And I will be so very grateful for some relief.

not perfect

2008-07-29T09:49:00.000-07:00

I caught a summer cold, compliments of my kids.

They are thoughtful like that.

I managed to hit Jazzercise Saturday morning, but my throat was miserable.

Sunday, I was dragging and my perfect staging abilities - our house is on the market - was hampered. I let the house relax a bit while I sunk into the couch.

Of course, my slacker tendencies meant I left for a movie with the house less than perfect AND someone wanted to see it.

Doh. I hate that.

But like always, I am doing the best I can on any given day. And sometimes that's not saying a whole lot.

pretty pathetic

2008-07-22T18:22:00.000-07:00

Does that last post say MAY 26TH. I knew it was bad, but not that bad. Yikes.

Well, I didn't fall off the planet, thankfully, but I had been swarmed with first the end of school crazy in June followed by the manic activity of staging our house that we recently put on the market while the kids are out of school.

Bad news: Complete and utter blog neglect. (Even mamamilton.com felt unloved.)

Good news: I was able to do a lot of the painting - count them, 5 rooms on one weekend - and although I was of course sore, it was very manageable with a little extra Neurontin.

So, I am back to keeping this site current again, as best I can, while summer roars around me.

rains

2008-05-26T18:40:00.000-07:00

When it rains, it pours.

Or so they say.

(I've never understood that saying. We take our rain in spits and drizzles here.)

I've had a resurgence of symptoms lately, running the gamut: increased painful neuralgia in my hands and especially, my feet; muscle aches and weakness in my quads; exhaustion; dysphagia.

I'm finding myself more discouraged than I have been in the past. I don't think the pain is worse; I think I am overwhelmed.

Summer is coming and with it, the kids and I will be trying to get the place ready to sell so we can move while Greg continues to work out of town a couple of days a week. It makes me yawn, just thinking about it.

But I'll place a call to my doctor's assistant and see what kind of cocktail we can fix up for me.

(And I'm wondering: Am I frustrated or depressed a bit? It's hard to tell.)

little inspiration

2008-05-04T19:17:00.000-07:00

“I want others with a chronic illness to go find their own mountains.”

Wendy Booker

I caught another cold. Again. Nasty stuff and right after I started working out again, with a vengeance. Thankfully, I am starting to feel better and should be back in the studio - dancing and lifting weights - again by Wednesday.

(I would go tomorrow, but I've got an appointment with my interim rheumatologist. Nothing says Monday morning like a blood workup.)

I caught a segment about Wendy Booker on CBS Sunday Morning, just today. Wendy was diagnosed with MS in 1998, after long term numbness in her legs. Though she found the news devastating, and against her doctor's wishes, she began training for and completing marathons. Now she is climbing mountains - literally - and challenging the notion that life is over when chronic illness takes center stage.

{CBS doesn't have her interview up on their website yet; it's worth checking out, once it's up.}

Watching her train was a shot in the arm. And it was just what I needed.

have drugs, will travel

2008-04-17T11:09:00.000-07:00

We came packing.

I carried an arsenal of meds to Disneyland last week, prepared for just about anything. Would I get a cluster headache flying? Would I be in pain, after racing through the park with my family? Well, if push came to shove, I was ready, drugs at hand.

The best part: I hardly needed a thing.

Yes, I've been gone for a month, under siege it seems. I had the dreaded flu - and before you whisper 'shot', remember that I'm allergic to eggs so it's a no go. The kids had head lice. We had two birthdays, one Easter, spring break and a trip to California. Man oh man I've been tired.

But as we flew home last week, I was grateful I was able to keep up with my family. In the weeks following the flu, I had the start of what seemed like another episode polymyositis. I kept an optimistic outlook, but packed plenty of Prednisone because it had me worried.

Besides being tired - which I imagine everyone experiences at Disneyland - and a neuropathy flare-up in my legs, I kept up, rode everything and had a blast.

It was just what the doctor ordered.

walk in the park

2008-03-04T22:01:00.000-08:00

Winter has been tough on my joints; my knees ache nearly every time I go outside. I can see a cycle building: aching and stiffness leading to less activity and less flexibility, strength.

This is not uncommon, I realize, just disheartening.

Not long ago, I was mighty strong, bendy even.

So, tonight I was at the park with Zack and two of his buddies and it was just cold enough for me to forgo reading a book on a bench. I decided I'd walk around the playground when the arch climber caught my eye...

{You know, the thing that looks like a big ol' rainbow?}

I started climbing until I was on top, looking down at the baffled boys, racing to join me.

I piled over and under it; I tried the monkey bars, swung around.

I felt like the self I left behind when I started seeing the rheumatologist. It was exhilarating.

*****

When our friends went home, Zack turned to Lexi, with the broadest, proudest grin.

You won't believe what Mom was doing tonight...

It brings me hope that I don't have to settle; I have choices.

thinking up hip hop nicknames: how about Puff Milton

2008-02-19T21:03:00.000-08:00

I should be rejoicing, celebrating the pain relief brought to me by Celebrex, now without stomach upset.

And I would be if it wasn't for the edema, the scary kind.

The rapid-weight gain, overnight I have not a pair of pants that fit kind of edema. Not even fat jeans, which left me in a skirt and tears before an impromptu barbeque with friends.

I like to think of myself like the Queen, confident and assured, despite being heavier from steroids and general chubbiness.

I like to think of myself being above weeping over pant sizes, but there I was: boo-hooing and frustrated to boot. The Celebrex worked wonders for my arthritis.

I guess it just wasn't meant to be.

So, I drank lots of water, and lo and behold, I was able to pry on some clothes the very next day.

Onward I go, discouraged but moving.

*****

Oh, Much to My Sjogren received a little love today. She blushed and dug her toe in the sand...

it still smelled like bergamot, part one

2008-02-04T20:17:00.000-08:00

The receptionist didn't recognize me. My hair is considerably longer now; my time away longer still. My naturopath met me in the hallway, and I yielded to a hug, steps away from the marks on the wall, tracking my kids' growth.

I came in for Bowen Therapy, to hasten my recovery from my neck injury and hopefully, to get some relief from arthritis. I had forgotten how inviting her office is; the tiny painting she had picked up at Goodwill. Her kindness.

She covered me in warm blankets and worked on my back, around my collar. She told me tidbits about her daughter, and then she would leave the room - typical in Bowen - like a Zen master, metering out parables.

I looked out the window, through the shades at the stark winter trees, already feeling some pain relief.

Why had I waited so long to try this path again?

lessons from a 2 year-old

2008-01-30T15:46:00.000-08:00

I'm a slow learner, always adjusting. I injured my neck a couple of weeks ago, and whined about it on my other blog. I was discouraged when the urgent care doctor acted like I was out of line, lifting weights with an underlying condition.

It bummed me out.

So, I've been babying my neck, getting better. I did only 10 minutes of yoga today, but that's 10 more than I've been able to do all year. (Yes, it is January. Sounds more dramatic that way.)

I've been thinking about a 2 year-old I know of, with JRA, going through IV steroids this week to reduce the inflammation in her eyes. Poor thing gained 2 pounds this month, from the meds and her cheeks are puffy. She hates being at the hospital. She has mood swings.

And I sound just like her at times, unable to cope. Whiny and miserable.

I figure if she can manage it, well, by golly, so can I. She's my hero.

clusters ceased

2008-01-09T18:16:00.000-08:00

The headaches have passed. I can't capture how much easier my life is in their absence. I would sing you a ditty, if I could sing.

Life always looks sweeter on this side.

My hands continue to be cold, every time I sit down with my computer.

Maybe I need one of those walking work stations...

update: stupid cluster headaches and blue fingers

2007-12-26T07:44:00.000-08:00

First, let's focus on the positive, shall we? The EE is doing much better: I am continuing the steroid treatment and eating carefully, but I did have prime rib on Christmas without any trouble. It's been months since I could eat something like that.

I am so thankful. My life is much easier now.

But now for the bummer news: I'm in the middle of a cluster headache cycle. I had a migraine on Friday, followed by two 2-3 hour clusters, one of Sunday and one on Christmas morning. I usually get several a day, so it could be worse. I'm taking prednisone, upped my neurtontin and prescription migraine meds. I took my last verapamil I had on hand and I am waiting for my neurologist to call me back.

I got a little weepy yesterday, worried I was ruining Christmas, curled up on the couch. Greg was quick to point out that the kids were distracted and fine. I was a bit loopy all day.

Right before the headaches began my fingers are turning blue, from Raynaud's syndrome. I wonder if there's a connection.

That's all for now. I hope your holidays are joyful and pain-free.

don't explain

2007-12-05T09:17:00.000-08:00

Well, hello my neglected site. Yes, I thought of you last month, really I did, but I was busy posting on my favorite child so you sat alone and probably cried. So sorry.

I spent part of my time away pouting over this eosinophilic esophagitis gig until I got sick of myself and started reading cookbooks, making my own soups. I'll admit it here: IT'S NOT FAIR. It's a useless sentiment, but this last diagnosis made me grumpy.

I think part of my disgruntled attitude stems from the social ramifications. Let's face it: food is often the center of our gatherings, and eating can be a landmine. It has been for me. I can't remember a meal I've shared with my extended family where my Grandma wasn't making comments, pushing food, questioning what I eat.

I grow weary.

So, between you and me, I'm eating what works. It's different everyday. I still feel like I need to justify my choices, but I am working on it.

THAT girl

2007-11-14T09:49:00.000-08:00

I've been stewing all week, frustrated by this new diagnosis. I am the google queen, I want answers, I want a plan. There just isn't much out there.

The standard treatment for adults is swallowing a steroid from an asthma inhaler. I guess I can look forward to eating soft foods, more biopsies, more dilations. Children with eosinophilic esophagitis are often tube-fed, and allergy tested because eosinophils are part of the allergic response. (They are commonly found in systemic yeast infections and parasitic infections too - and if you are wondering, I was tested for both and have neither. Now, that's good news!)

So, I asked my doctor if this could be related to food allergies, considering I do have a IgE mediated allergy to eggs. Could I have more hidden allergies? Not enough to kill me, per se, but enough to wreck my esophagus? And the answer my friend, is it could be. It's hard to say.

I've been researching diets all week: macrobiotics, limiting the most common allergens recipes, etc. So very confusing, all. I'm not sure what to believe.

I've thought about it and realized I am not as vigilant as I should be. I don't bother wait staff, making sure my food is egg-free when we eat out. I know mayo find its way into many foods, and as long as I didn't have an anaphylactic reaction, I let it slide.

Not any more. I regret being such a wuss.

I didn't want to bug anyone. I hate making a fuss over food. I don't want to be that girl.

But I am that girl. What can I say? I guess this is a lesson in taking care of myself, speaking up.

I am headed to the beach for a women's retreat with some of my favorite people at the end of the month. The menu looms in my mind. I emailed the director yesterday, asked to see the menu in advance. I feel high maintenance, but I'll get over it.

I don't have a choice. It's like assertiveness training, on the fly.

good golly gullet

2007-11-06T18:20:00.000-08:00

So I went in to see my rheumatologist this morning for my monthly check-up. He's a cool cat, in great shape and we get along just fine. I worry he will be retiring too soon for my liking - instead he is headed to Spain for 8 months, to study ultrasound methods, in Spanish no less. He's a go-getter. I like that about him.

We go over the basics: no pregnancy on my meds, flu/cold season, and the fact that we basically have maxed out the options up to the more drastic, in-clinic IV med stuff. I know this and nod. We cover the GI doctor's newest diagnosis (yes, the biopsy was positive): eosinophilic esophagitis and the treatment. (I am have an inhaler that I don't *puff* but rather swallow, delivering the steroid to the esophagus. I am sticking closely to a soft food diet.)

I ask tons of questions. I want to know what I can do to improve my case, stay healthy. And he basically says this new condition probably is from my autoimmune disease and there's not much I can do about it. This just ticks me off. Stupid autoimmune disease.

Like I said, this is a good doctor. He encourages me to workout, lose weight, be brave and strong. But I just can't help but think I can do more.

If the freight train is coming, and I can't stop it, fine. But I plan on wriggling my way off the track - maybe it will just lob off a toe.

Clearly I am grumpy and out of sorts. I need a good night's sleep and a plan.

Man, I'm stubborn.

anxiety is setting in

2007-10-30T16:29:00.000-07:00

Over a week has passed and the biopsy is starting to weigh on me - will I or won't I have yet another pain in the butt diagnosis. Do I have more food allergies? And then what?

Tick tock. I hate waiting.

cupcakes for a cause

2007-10-24T19:22:00.000-07:00

Create a virtual cupcake and with every one you send, $1 is donated to Cupcakes for a Cause, an organization that helps children with cancer.

Cute and calorie-free for a good cause - count me in.

Update: upper gi endoscopy

2007-10-23T16:15:00.000-07:00

Here's the brief rundown: I had a schatzi ring that was dilated and broken up. This sounds very icky and I have pictures, so if you are looking for scary Halloween fodder, it's all yours. (So kidding.) Doc GI also took a biopsy for possible eosinophilic esophagitis. I guess I will get the results in a few weeks. My preliminary research, laying here in my bed, tells me this might be related to food allergies, or an allergic response. The doctor said this would need to be treated with a liquid steroid I would swallow to reduce inflammation.

Other than feeling hungover today and having a sore throat, everything seems to be a little better today. It wasn't near as scary as the meds worked their magic and I could hardly remember a thing.

I count this as a good thing. I'll keep you posted on the biopsy results.

verdict: upper endoscopy

2007-10-17T17:31:00.000-07:00

GI doc came in yesterday and asked me about my rectal bleeding, because that's what he read in my chart. Oh really? Now I imagine that bleeding like that is unpleasant, and I don't want to make jokes about it, but it did make me laugh just a little because rest assured, this was not the reason I was there. Once we got past the mix-up, I found him to be nice enough - it's hard establishing repertoire with a new doctor. You need them, to be sure, and you have to communicate well, or you may not get what you need.

So, he explained several things that could be leading to the dysphagia:

stricture - scarring that narrows the esophagus, making it increasingly difficult to swallow
shatzki ring - benign ring of tissue in the esophagus
motility disorder - basically the muscles don't work right

I am going Monday morning for the endoscopy. It doesn't sound pleasant, but I will be sedated and offered narcotics, which relieves my mind. He may do a biopsy or dilate the esophagus while I out of it too. I sure hope this makes me all better.

(And that he reads the chart right this time.)

___________

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nightmares and being able to adapt

2007-10-10T14:22:00.000-07:00

I had a nightmare over the weekend. I kept choking and choking - I couldn't swallow some lettuce and I went to the ER where they proceeded to stretch my esophagus out with a medieval, torturing device. I told the dream doctor that I thought it might hurt as he began and he said, "Yeah, most patients cry for 2 hours." Then I woke up because even my sleeping brain knew that was a bunch of crap.

It can't be that bad, but I am obviously a little nervous about my appointment.

I've been spending a lot of time thinking about my Grandma, visiting with her on the phone since she had her stroke and is inside more often. (She is typically outside, working with the dogs at her kennel.) Though she is never weepy, she speaks about being sad - how hard it will be for her to give up her business and home soon. There isn't any way around it; I know that. But it seems to surprise her. I find that interesting.

None of want to grow old and lose our independence. No one wants to get sick. But it's coming for us all. We may not like it, but what is the alternative? I think my Grandma has always been in control, always wanted to set the rules - for everyone. And she never backs down.

I admire this quality at times. She is a force to be reckoned with.

Sometimes, though, it is better to go with the tide, let things be. Fight, be strong and sometimes accept there are things we cannot change.

That serenity prayer isn't just for AA, my friends - I find a little peace there too.
__________
Technorati Tags:dysphagia, GI, stroke, serenity prayer, acceptance, growing old
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but I just bought food

2007-10-03T13:55:00.000-07:00

I went grocery shopping yesterday for two ravenous hyenas, the Invisible Traveling Man and me - the woman who needs toddler foods. (I feel like a 1 year old. "Chew, chew, chew.") Well, I'm not about to start buying Gerber foods again so there has got to be a way for me get my veggies because let's face it: a grown woman shouldn't subsist on chocolate pudding.

Today I combined stir fry vegetables with broth, making a tasty (egg-free) soup in its own right. Then I added the instant miso soup I picked up at Trader Joe's. It was heavenly - low fat and satisfying.

Good food is good for the soul.

elixir

2007-10-01T21:33:00.000-07:00

Last week, I could feel a cold coming on. (Gee, thanks kids.)

I drank lots of water and took about 4 ounces of my newly harvested? brewed? kombucha tea with a little bit of unsweetened apple juice. I turned in early.

Maybe it was wishful thinking, or the water. But I forgot until mid-morning that I had even caught the bug.

Or maybe kombucha has been around for thousands of years for a reason.

He's baaccckkkk

2007-09-25T16:40:00.000-07:00

My favorite doctor is back tonight, insulting friends and consulting janitors. Good times, good times.

goes down easy

2007-09-21T13:12:00.000-07:00

After some phone wrangling, I have an appointment with Dr. Gastro - ah, my team grows. The receptionist was charming and kind (ew, you poor thing) but the earliest she could get me in is October 16th. Such is life with specialists.

With this 'moist' diet, one would think the weight would just be falling off. I thought it might be the silver lining. But alas, sucking down smoothies and puddings does not a smaller body make. Those calories just slide on down and leave me hungry.

I'm cutting coffee, alcohol and spicy, real food and all I get is bigger. I am waiting for my sense of humor to kick in. Right. About. Now.

So, I am scanning the globe, searching for lowfat, egg-free, not-too-spicy recipes that my family will like too. And when I am done, I will find a solution to the missing sock dilemma, plaguing families across the country.

I'm on a mission.

*****
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this is what denial looks like

2007-09-19T22:12:00.000-07:00

Last week was nasty. I 'choked' all the time, food stuck in my esophagus. I ran a fever. And Greg was gone a lot.

I don't like to write about it. I don't know why. It used to feel cathartic. Now it feels indulgent.

But I am back. The fever is gone, and I am feeling a little better. I have stocked up on soups, smoothies and other moist foods.

{I told a friend that today. It makes me think of cat food.}

I'm still waiting to hear from the gastroenterologist. I think it's time I get forceful.

hard to swallow

2007-09-05T16:44:00.000-07:00

I am trying to keep my chin up but I swear it is tough. I saw Dr. Rheumy today and have a couple of things to be happy about: I lost more weight, I am reducing my Prednisone dose and the very professional woman that drew my blood today left no marks.

All good.

But I can't help but worry about my new symptom - I am having a difficult time swallowing solid food, especially if it is dry or hard, like rice or my medications. I have 'choked' like this before, but now it is becoming a problem. It could be because my esophagus is dry or he mentioned there could be other causes. I am increasing my Prevacid, and calling back with an update next week. Then, I will most likely see a gastroenterologist for a barium swallow test.

My Grandma has struggled with esophageal stricture for years. She has spent many a holiday in the bathroom, coughing on lodged food. I am familiar with the procedure her doctor performed, without pain medication, to stretch her esophagus out; she cried out in pain. (My Mom could hear her from the waiting room.)

This sticks in my mind, yet this food sticking thing is for the birds too.

Bummer.

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while I was away

2007-09-03T16:05:00.000-07:00

Nothing much has been happening in my little corner of being chronically ill - I don't like to think about it much frankly. It's like being chronically late, only I can't quite control it. It's negative. And when I sit down to write a post, I can't help but come to two things:

When I am with folks (and we all know them) that are having a little love affair with sickness, I find myself in denial, wanting to separate myself from them. I don't want every sentence to begin with, "My pain/fatigue/depression/disability...", every 10 minutes. I don't enjoy being with victims and I surely don't want to identify on some profound way with being ill or being whiny. That said,

When I am with folks (and we all know them) that poo-poo what are legitimate concerns, I find myself chatting up how rough it really is. I suddenly feel misunderstood and want their approval - poopy though they be.

So, I am still doing the dance, adjusting to this new life I am leading - luckier than most, still living with pain and disease.

How do you keep your spirits up? How do you strike the balance between becoming a professional patient and holding on to what makes you you?

And how much do you expose - to friends, to family, in your professional life?

Technorati Tags:chronic disease, sjogren's syndrome, medical victim, whining, autoimmune disease
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Hydrate

2007-08-18T06:33:00.000-07:00

I'm about to say a ridiculous thing (I warned you): if you have sjogren's syndrome, you got to drink a lot of water.

See? Common sense.

But a couple of weeks ago, I was exercising and running around with the kids and the next thing I know, I was dizzy - I thought I was going to faint. I double-checked my meds. It happened three times one week. I was looking at beads at the craft store and boom! I felt like I needed to sit down.

So, I started being a little more cautious. I cut back on the workouts or made sure I ate more beforehand. I started taking naps again. And I chugged water throughout the day. It seemed to do the trick.

Catching up

2007-08-07T17:22:00.000-07:00

I caught up on my memes today over at Mama Milton.

I should have a new post tomorrow; stay tuned.

More tips from Ms. Granola

2007-07-26T15:50:00.000-07:00

Over the weekend, my right side went numb. Just for a day. I had to drag my foot along, and my knee acted wonky and wiggly - I had a nice limp started.

There has been a whisper of nerve pain in my right eye - often the precursor to a cluster cycle.

I am more than willing to abide by conventional medical advice, and I take my meds like a good girl. But folks, there is no cure for sjogren's or other autoimmune disease. I have bad days.

I don't believe this is reason to give up or buy into crazy snake oil promises of cures. I just have to believe that lifestyle makes a difference, and I will take help wherever I can

Here's an article I found on Dr. Weil's site today. It's not super specific, but it also has some pointers worth trying when other methods fail. (I see skipping dairy made the list. I knew I was on to something.)

drandrewweil alternative+medicine sjogren's autoimmune tips neuropathy clusterheadaches

The (non) Dairy Queen kicks wheat to the curb

2007-07-25T18:28:00.000-07:00

Warning: feel free to file this under 'I always knew that lady was a fruitloop'. Or something like that.

But then I will be forced to ask, 'Is that fruitloop dairy-free? How about wheat-free?'

I have eschewed wheat and dairy during seasons of my life, for various reasons. Because Marilu Henner told me to. (The dairy, anyway.) Because my breastfed son had 'digestive' issues from week one. Because my naturopath suggested it a couple of years ago.

It is pain to eat this way, especially because I have a bone fide egg allergy. I certainly don't expect other people to accomodate my plan. But my stomach always feels better when I'm off the 'stuff'.

It's a fact. A big pain in the butt fact.

And now that I have a belly full of pills, all with ulcer warnings on the bottle, I am taking care to protect my gut.

We'll see if it helps.

wheatfree dairyfree pills stomach specialdiet GF/CF

Needless worry

2007-07-12T22:41:00.000-07:00

Tuesday morning I came home from dropping the kids off at VBS to a message from my rheumy's office. Some routine blood work the week before had come back abnormal so I needed to head to the lab for a repeat liver workup.

This seriously brought me right on down from the lofty corner of the clouds I was living on that morning.

So, I made my way over to the pharmacy and the lab and got everything done before I headed to my Dad's birthday party. I even held up during the heatwave. But this test got under my skin.

I worried about liver damage from Imuran, that I would have to give up the wonder drug. I worried about the stuff I read about Primary Biliary Cirrhosis . (Sometimes knowledge is a dangerous thing.) I worried. I worried alone; my hubby's away on another business trip. I worried about the kids.

I finally decided yesterday to stop, because what will be, will be. The future is not mine to see, nor yours. I packed up the kids to visit a friend and her darling baby, Sage. I talked to my Mom and Greg. I got up this morning, took the kids to swimming lessons, then VBS and later, met up with some moms and our tribe of respective kids at an urban water park.

I've got me a lot of living to do.

I got a perfunctory letter in the mail this afternoon that simply stated that the repeated blood tests were normal. At first I was shocked - talk about fast turnaround. But then it sunk in and I was so thankful.

Like I said, there's a lot of living stretched out in front of me...

primary biliary cirrhosis Sjogren's syndrome liver blood tests worry living

Yankee doodle doctor visit

2007-07-03T20:56:00.000-07:00

I saw Dr. Rheumy today. As expected, we discussed the meds and came up with a plan for the rest of the summer. I will continue going up on the Imuran, and hopefully wean off off Prednisone this fall. Everything else is staying the same.

I could tell a big improvement in my legs - he ran the pinwheel up and down and I could both feel my leg and I didn't experience any pain. (I still don't have much sensation in my feet, but it has been that way for almost two years.)

I was pleased that I had lost weight; I was proud that I have resumed a workout schedule, joined a gym. He chided me to keep working on it. I ignored him (a little anyway) and just remembered that I am doing quite a bit. I'm still proud of myself. I am sweating and aching and doing what I can.

I am grateful that he listens, that he has taken my concerns seriously. Not every doctor does. I get tired with the kiddos during the summer, but I don't need a daily nap now. I have been more social again, spending time with friends. Hopefully this remission will last.
sjogren'ssyndrome rheumatology Imuran neuropathy checkup

Dialogue

2007-07-02T22:03:00.000-07:00

MtMS has readers! I'm not just whining (entirely) for my benefit. Yippee.

Being sick and being in pain is just one of the FUN AND EXCITING parts of having an autoimmune disease. But let's not forget the joy that can be found getting diagnosed and receiving treatment. Because you haven't lived until:

paper is jammed in a not-so-pleasant fashion into the lower eyelid; the eye that is dry, no less, and doesn't want to be messed with
a resident 'performs' a spinal tap, biffs, and you get poked again
the headache that follows
and the we just don't know what's wrong with you...

I could go on and on, but I don't want to brag.

Here's some thoughts after reading recent comments:

The neurological symptoms are a big drag. They are considered less common, and I think, misunderstood. I saw a reputable neurologist and we still didn't come up with any answers. No one thought it was autoimmune, even with the positive ANA. Until. Until a high frequency showed up on a brain MRI. Even the doctor dismissed it, but followed through with more tests. I have often thought that if I had complained about my dry eyes earlier, we may have arrived at a DX earlier. But because my chief complaint was neurological pain, numbness, and fasciculation (twitching), I think it took longer. The neurologist referred me to the rheumy doctor - maybe that helped...
I don't know where I was going with that...
Another thing I've come to appreciate from both doctors -honest, however, vague answers.

Me: So, are my cluster/vascular/I-want-to-stick-a-key-in-my-eye headaches from Sjogrens? Is the nerve inflamed?

Doc: Maybe. Could be.

Me: Hey, I ache more than my Grandma. I'm sporting orthopedic shoes...Is this related?

Doc: Hmm. Maybe.

There's a pattern. I think it is because these things are tricky. They shape-shift (sorry to go all Star Trek on ya). Everyone 'does' it differently.

So like parenting, politics and religion, every one got a horse in the race.

I just pray my horse can get up and go.

autoimmune chronic+illness sjogren'ssyndrome sjogren neuropathy fasciculations diagnosis

File this under 'who cares'

2007-06-30T11:26:00.000-07:00

I've been a bad, bad blogger. I've been neglecting this site with dedication.

Sorry.

I saw the doctor for my routine lady visit this week. It's funny how I feel like I see doctors all the blessed time, yet I was a YEAR late on this one. Looks like the chronic stuff just takes over and I forget to take care of myself in a reasonable manner.

I weighed in, and found I had lost almost 2 pounds since my visit with Dr. Rheumy in May. Which should have been great news. Ta da. But I was grumbly and sad because I have been so careful with my diet and I joined a gym a month ago. There has been sweating and lifting weights. Yoga. Lots of water.

The reward felt puny.

I know the steroids don't help in this arena. And I am absolutely sure that being overweight is not the worse thing in the world. (I had an after-school special eating disorder in high school. It was the 80s. Everyone was doing it. It didn't solve anything.) My world would not be brighter and better if the scale reflected a smaller number to me - I would just have more clothes to wear.

It's the effort that hurts. It's because I've been trying.

Oh well. It only proves that I am kicking Sjogren's butt with the meds now that I can whimper about weight gain. In March, being chubby was the least of my worries. I was consumed with pain management. I got what I wanted. I feel better.

So I will still keep working out; I will eat healthy foods. I need to.

And I will enjoy this sunny day, big butt or not.

prednisone weight sjogrens exercise

Gravel

2007-06-16T18:07:00.000-07:00

I was just having smug thoughts about my dry eyes; they really haven't been bothering me much. Until today.

(Those darn thoughts of joy)

I forgot how annoying it can be. The blinking. The irritation.

The 'I think there is gravel in my eye' feeling.

Geesh. I will try to be more grateful when they feel better.

sjogren's redeye gravel dryeyes

Me and the razor

2007-06-04T17:04:00.001-07:00

You can find me most mornings, slicing up little bits of Prednisone, slowing weaning myself off the juice. Sometimes I do a fabulous job, cutting it up into fourths. Other times I look like an extra in the latest coke film, making lines.

[Can we get Johnny Depp?]

Looks like I am in the market for a pill-cutter.

Technorati tags: Sjogren's prednisone pill-cutter Johnny Depp

Going down

2007-05-24T18:35:00.000-07:00

I saw Dr. Rheumy today. I am officially beginning phase one of the 'get the heck off of Prednisone' routine; followed by joyful high stepping.

It will take weeks, maybe months, to completely wean off the steroids, but it is a start.

My total weight gain: a measly 4 pounds in two months. This, my friends, is pretty good news, all considering.

I am also upping my dose of Imuran and was given a pass on more blood work today.

So besides the ordinary sinus headache, compliments of the cold-du-jour, I am all smiles.

Technorati tags:Prednisone Imuran weight sjogren's chronic+illness

I got some love

2007-05-22T18:58:00.000-07:00

I forgot to mention I got some props recently: http://browserlife.blogspot.com/2007/04/rave-of-day-for-april-18-2007.html

Thanks!

It pays

2007-05-22T11:53:00.000-07:00

I recently received a bill for $220 for a specialized blood test, one that will be billed to my insurance and (hopefully) covered.

[Yes, that's one test. It was to test for a certain enzyme level - if my levels were low, I wouldn't be a good candidate for continuing Imuran without it becoming toxic to my liver. So it was important, but still...]

I glanced over it and didn't give it much thought. I imagined it was right.

Then I checked it against my records and found three errors - three errors that could take $220 out of my pocket or force me to beg for an appeal.

The moral of the story: assume nothing. Make reviewing the endless, and boring, paperwork your new hobby. It pays to look.

Technorati tags: insurance bills

My secret boyfriend

2007-05-21T18:13:00.000-07:00

Ok, I lied. It's not really a secret; Greg knows I have a thing for Dr. Gregory House. He is forced to watch/listen/hear me go on and on about my favorite TV doctor every week. And when they, the good people at Fox, take the show off for about three weeks at a time, the TV (and Greg, again) get an earful.

(Even Zack can identify him on the cover of a magazine.)

Fictional Dr. House is snarky, rude and impatient. He carries a cane and pops Vicodin to combat agonizing pain. What's not to love? He is raw and human and brilliant.

Plus, it is like playing 'name that tune', only with autoimmune diseases. (Every other episode 'autoimmune' comes up.) I imagine that is because he specializes in diagnostic medicine. And there is one thing you discover when you have a multitude of strange symptoms and no immediate explanation: you are bound for a battery of tests and a whole lot of guessing. It's a place I am familiar with.

One week later

2007-05-17T11:14:00.000-07:00

I made it to horse camp. We were all intact. There were mosquitoes, bunk beds and silly little girls; I met some fun ladies aka the 'Moms' of said silly girls. I was proud that I made it through a rough night's sleep and really bad food.

(Not what the doctor ordered.)

But I am glad we went and I saw Lexi ride a horse for the first time.

The weekend was busy, and I had a great time with family and friends. I ate too much, laughed too much and even drank a little booze. I felt pretty good.

Enter Monday. It all caught up with me.

I am beginning to understand that I am on a budget; my wages have been diced. When I borrow too much, the creditors start hounding me and one way or another, I will pay.

I don't regret my fun weekend. It's just that Monday was rough. I bathed in Batherapy and wondering if I could go through the day, with green paste slabbed on me. Would the kindergarten class notice?

The 'normal' zinging sensation in my feet have been punctuated with jolts, that make me jump. It reminds me of when I was a little girl and I had accidentally touched a live wire at my Grandma's house. The cows may be dumb, but I get why they stayed clear of the fence. It bites.

By Wednesday, I was starting to feel a little better. Today, Zack woke up with a fever. I've cancelled my plans and am hoping for the best.

Please be tough immune system. No attacking the good parts, just keep me well. We have another exciting weekend planned, one I'd hate to miss.

I'm having a tough time with my Pollyanna shtick.

Okay, I'll give it a try.

I'm sure this too will pass.

Not convincing, but it's a start.

Technorati tags: Sjogren's+syndrome chronicillness budgeting coping

Stress

2007-05-10T10:12:00.000-07:00

I am a relatively calm person by nature.

It's been a busy week, not unlike others, yet I am wearing my shoulders as earrings. It's not a good look.

So, I stopped completing my to do list just now and put on a yoga DVD.

It will all get done, it always does. Or it won't.

Running around frantic doesn't help me live the lush life.

Moonface rising

2007-05-08T17:55:00.000-07:00

I read all about the side effects, signed the dotted line and started Prednisone a month ago. I have been careful with my diet, and sodium intake and drinking aqua until, well, something dramatic happens.

And then I take a peek at the picture we took this morning, and it is clear to me that Moonface has arrived. Is back fat far behind? Stupid steroids.

At least my beard is coming in nicely.

My sense of humor is little tattered tonight. I feel like playing the blame game.

Don't like the tone of your wife's voice tonight? Blame steroids. Is your husband's hearing failing? Blame steroids. Are you misunderstood? Not paid enough? Underappreciated? Sick of the war in Iraq? Oh yes, blame steroids.

Now you try. It's an all-play.

I know why I am swollen. I know it will pass. But today, I am not a fan.

Technorati tags: Moonface sjogren's syndrome Prednisone

On being happy.

2007-05-06T06:40:00.000-07:00

I woke up early this morning; the little birdies were trying out for the choir it seems. Our bedroom is torn up. We are painting, meaning I am avoiding the fumes and Greg is breaking his back. I can't wait to finish it up today - it's going to be beautiful.

I woke up chipper, with no pain. I laid in bed and thought about the week. I kicked the ball around with Zack and one of his buddies at soccer practice. I swung a tennis racket around with the kids. We caught the latest Spider-man movie - and Zack stayed awake. Lexi had a sleepover. I had lunch with good friends. I hosted a spa party. I went to a reading, saw Chuck Palahniuk. My life is sweet.

I woke up thankful.

I woke up happy.

(I woke up sappy. Don't puke on your shoes.)

I've had a couple of friends ask how it is that I am still a happy person, at least most of the time. I can't help but think 'what is the alternative'? Life is short. It is true for me and it is true for everyone. Time's a wastin'.

I plan on having me some fun while it lasts, to make it count.

I don't feel like that when I hurt from head to toe, but I push forward until I do again.

It may be denial, but it's how I cope.

Sure beats crying in my soup.

Technorati tags: hope sjogren's syndrome living with chronic illness

Paranoia

2007-05-01T15:35:00.000-07:00

My inner control freak is going crazy.

No sooner did I start Imuran and everywhere I turn, folks are getting sick - more specifically my girl is sick, coughing and sneezing, and she feels clingy. I don't know just how immunosuppressed I am these days; I mean do a few of the good guy fighters work, or are they all on a strike? How sick could I get?

Can I work with the 2s in the church nursery with my scary mask on? I could decorate it with the little baby Jesus stickers...

How about at school? Would Lexi claim me it I bling it up with some rhinestones?

(Think of the money I will save on lipstick.)

I am determined to make masks the new spring accessory. Just think SARS - it could be hot.

*****

We came to some conclusions at last week's appointment: to continue with the Prednisone (hello carrot sticks) and to start Imuran. The hope is that it will suppress my immune system and the inflammation will decrease. The up side: less neuralgia, more function, less arthritis and muscle pain - even my eyes could feel better. The down side: nausea, fatigue and a propensity for catching crap.

We are hoping that the more aggressive treatment will halt the progression of the disease, the small-fiber neuropathy.

Sounds good to me.

Now, please cover your mouth when you cough before I go all Hughes on you.

Technorati tags: immunosuppressants germs sjogren's syndrome small fiber neuropathy

Creature from the green lagoon

2007-04-26T15:56:00.000-07:00

When I was growing up, my Mom had her nighttime rituals - chief among them was her evening bath. I would beg to 'keep her company', lest the poor soul be lonely. It's a wonder she didn't lose her mind with all my constant yakking.

I started taking more baths over the past year, mainly as a way to wind down and get some pain relief. (Just so you know, I wasn't grubby before that. I just took the faster shower method.) There are lots of fancy remedies, but I have taken a liking to Batherapy. It is a natural mineral bath agent (not a secret agent, because it says so right on the bottle) and it is relatively cheap. It smells, well, rather earthy, but I have grown fond of it. At the risk of sounding like a bad infomercial, I would highly recommend it when you've tried all your strategies and are still in pain and need a good night's sleep. The stuff works.

Technorati tags: arthritis batherapy pain relief

All better

2007-04-19T18:53:00.000-07:00

I arrived for my nerve conduction test early; I figured the sooner we get it over with the better. I could feel a nervousness building in my chest, and tried to find humor in the irony but I couldn't quite shake it.

When the elevator doors opened and I saw the chaos, I remembered why I was feeling afraid. Not a lot of happy things find their way to the neurology floor. In pediatrics, there's a flood of ear aches and rashes. Here, the mood is more serious.

There was a woman being wheeled in on a stretcher, accompanied by her family. The lady after her was clearly upset and terse with the receptionist.

I started to wonder if this is what a panic attack feels like. Either that or I had new symptoms to report: namely, sudden weakness in my legs.

I told myself to get a grip, to stop worrying that this test would beget more tests. That I was making it worse, this fleshing out of possible outcomes. I started reading, drowning out the woman clutching her head and moaning. I was taking deep breaths. I was feeling better.

Then one of Marge Simpson's long lost chain-smoking sisters started reading the newspaper, aloud. I am sure she was just trying to pass the time - it was clear by now that we were all in it for the long haul as the doctors were running behind - but after 15, 30, 45 minutes passed, it was all I could do to stay seated.

Must you read about the massacre? In that voice?

Let's just say she was not a cup of chamomile tea.

I finished my book and read the posters on the wall. I was down to Field & Stream.
*****

The doctor and I chatted about books and writing. It really wasn't all that bad. Turns out I don't have carpal tunnel - I got better. I credit my unemployment. Slinging books can't be good on the wrists, sjogren's or no sjogren's and I am pretty kind to my joints these days.

So I commented that I feel a little whiny, complaining when there has been an improvement. (Read: Am I crazy?) He reminded me that it was important to eliminate one possible cause for my discomfort; he spoke highly of my rheumatologist. And he encouraged me to write more, join a writer's workshop.

Told you they are superheroes.

Technorati tags: nerve conduction test neurology panic sjogren's symdrome Marge Simpson

Common

2007-04-16T08:32:00.000-07:00

I have a cold now. Just a cold. My throat hurts and is dry, so I am drinking lots of tea and plan to rest today.

I can't take an antihistamine these days - it seems like it dries me out and guess what? It exasperates my other, bigger Sjogren symptoms.

Any winning suggestions when you can't load up on cold meds?

(I have a feeling that rest and liquids are probably key.)

Technorati tags: common cold sore throat sjogren's syndrome

Dealing with difficult people

2007-04-13T16:43:00.000-07:00

A couple of weeks ago, I went in to fill a prescription for Restasis; the outrageously expensive eye drops for the rich and famous. I thought it looked weird - it wasn't signed by the doctor. I figured the pharmacist and I would have a chuckle over it and she'd call and...

You can see where this is going.

Instead I was met with suspicion. The Pharm tech called over for a higher authority, and they both looked me up and down. She spoke kindly, to be sure, but I could tell she was handling me. She turned to her computer, typing madly, like they do in movies, making conversation about being unaware of Restastis being available OTC, but she would be willing to check for me. I think I turned my head sideways at her, wondering why she was looking for something we both knew didn't exist so I said just that.

Clearly she thought I was crazy. She asked if it was for my kids; she asked me what I wanted her to do. I felt like I was robbing a bank. Poorly I might add.

She insisted that she call the doctor. She insisted that I go back to the eye doctor for another appointment. And though I apologized for getting snappy with her, I had had enough.

She kept my prescription.

I didn't know eye drops had recreational purposes.

I left angry and frustrated. Sure, I knew I would make one call to my doctor and I would get the drops. I didn't question that. But the nonsense of dealing with one pharmacy after another, after a doctor's office and HIPPA and copays and reading the fine print and researching - it feels like a waste of time. One I can't completely escape. In the end, like taxes, they have ya over the barrel.

It makes my dry eyes want to bleed.

Technorati tags: restasis crazy pharmacists prescriptions medical bureaucracy sjogren's syndrome

Feeling pretty darn good

2007-04-10T20:47:00.000-07:00

I started Prednisone on Sunday. My little Easter treat. I had hoped that the prescription would have been called in late on Friday, but tried not to hope too much. Because we knowing low expectations can be key.

I think the pharmacist was surprised by my utter joy - who wants to take a drug with this host of side effects? The answer in short is me.

I like bounding up my stairs. I like walking erect, like a real girl, instead of being hunched over in the morning. I like feeling my fingers and not just when they are zinging with sharp pain.

Look, I have feet. I can feel them.

Yes, yes, there has been some insomnia, but nothing outlandish. And I am eating my veggies and eating sparingly for I know this stuff can pack on the pounds. In fact, I have trying to lose pounds from Prednisone this year anyway. Every time I reached for a questionable item at the grocery store this week, I pictured my doctor, with his head in his hands, asking me to promise that I would be careful with my diet during treatment.

Shame is effective. I will see him again soon. I hate being in trouble.

Technorati tags: prednisone weight gain side effects neuralgia sjogren's syndrome

I wasn't begging for spam

2007-04-06T11:50:00.000-07:00

Dear doctor-writer man:

Maybe my posts have given you the false impression that I am so sick, so lonely, that I would appreciate receiving your ad via comment ON EVERY POST I HAVE EVER MADE ON THIS SITE. I wasn't using my inside voice. Sorry.

See, I can imagine you pimping your book once on my blog - whatever- but flooding it means that you aren't A) reading my posts and B) you are trying to annoy me.

I can find annoying things in my life all on my own. Thanks though.

Go away.

Sincerely,

The Sjogirl

Begging for Prednisone?

2007-04-06T10:24:00.000-07:00

I reread that last post, and realized how robotic I sound.

"I, Lisa, have a disease. It is icky. I take medicine. Beep. Beep."

Oh well. I felt like I needed to spell out where I was, and I didn't feel like *talking* about how bummed I feel every time I see the doctor. This may be why I don't schedule like I should. I can feel expansive and optimistic until someone starts talking about the facts and the 'things to come'. Or could come. Then I spend a week worrying.

And worrying simply is a waste of time.

I have been feeling worse. It occurred to me that if I am going to do a course of Prednisone, let's just do it. Why test more? (I did blood work. I just don't see the need to zap me again to come up with the same answer - my autoimmune disease is most likely damaging my nerves.) If the treatment is the same, and we are playing detective, let's get it going on. I have kids to care for.

I never thought I would be begging for the nasty steroids again. But if it helps, and I feel good, there's no time like the present to start.

I am calling back today as soon as the medical assistant is in.

I can't wait to plump up like a Ballpark frank.

Unpacking

2007-04-02T19:51:00.000-07:00

I wrote a post last week, lost to the Blogger ghosts, outlining what happened at my last appointment with my rheumatologist. It was filled with actual paragraphs; tonight it is only an outline:

There was the neurological exam, akin to a sobriety test. Lots of walking straight lines on my toes, touching my finger to my nose (with my eyes closed) and my favorite, mimicking the good doctor while he makes funny faces. There was also the traditional pin poking, to torture me. (No, not really to torture me - they say it is to check where the lack of sensation begins.)
Dr. Bong (his real name) is sending me to see my neurologist for another series of Nerve Conduction tests.
I will increase the gabapentin over the next few weeks, and hopefully, manage to stay awake.
We (meaning me) will try a therapeutic/diagnostic course of my old pal Prednisone, and if it helps,
I will try a DMARD. The only medication I recognized was methotrexate - which frankly scared me at first, but I am coping better now.

I ended the post with some harsh words for the scary lady/man that took my blood. It was 4:55 pm and clearly she wanted to go home. She audibly groaned when she saw me. So, she really warmed up when I told her that it can be hard to draw my blood. She took it as a personal challenge. She jabbed me and when it didn't work (told you), she didn't try again - she wiggled and jammed the tip, mid-stick, until it did.

Jerk.

Not all medical staff have found their calling.

Two pills for me, please

2007-03-13T12:14:00.000-07:00

Today is the first day of project ramping up - I doubled my Neurontin last night. I noticed I was a little groggy this morning, but I am perfectly fine blaming that on the time change over the weekend. I didn't make big plans for today (especially driving), just in case I was wiped out. So far, the initial drowsiness was more pronounced when I started the drug last week; I have grown a little accustom to feeling loopy I guess. (Much like when I went from one kid to two - I had already adapted my busy life to motherhood.)

I might be crazy (was there a warning for that?) but I swear that my mouth isn't dry anymore. I have been lucky to not suffer much in that department, but I can detect a difference. I hope this is some positive side effect. (Last winter I did get dry cracks on the side of my mouth. And nothing says sexy like oral sores.)

I see the rheumatologist in a week. I look forward to his take on this neuropathy that is still causing me a lot of pain, and well, making it rough for me to get around well. I'll keep you posted.

Update

2007-03-09T09:28:00.000-08:00

As you know, I went to see my new primary doctor on Tuesday. Last fall, I decided that I needed a doctor who I could see for everyday woes (like when I get a sinus infection) that would also be aware of the my chronic health issues. Someone who could figure out when I need to see a specialist - a clearinghouse in the flesh. I love my naturopath, but I needed someone within the allopathic loop as well. I had high expectations for this doctor; someone who gets me. Someone that understands that I don't want to take unnecessary medicine, that I like to employ common sense first, and that I am raising two kids and have a suburban mom lifestyle (read: busy). I need to be able to function because I am the primary caregiver and my husband sometimes leaves me lonesome, earning the big bucks.

I found her the first time out.

When I explained last winter that I was concerned that my cold would become a sinus infection right before my trip to see Greg's family, she got it. I only take antibiotics when it gets really bad and after I have used the neti pot, drank gallons of water, rested and used decongestant and expectorant. Instead of making me wait or some hogwash, she wrote not one, but two prescriptions to have on hand for the winter, just in case. (I haven't used either.) She understood that Sjogren's could make me more susceptible to sinus problems, and conveyed a sense of understanding - that it wasn't my fault. She understood that I do the best I can to prevent infection, but hey, if it happens, no problem, take these. Imagine that: a doctor that partners with me.

When I saw her Tuesday, she had a nurse studying with her. It was clear that the intern had an intensive medical background and I enjoyed listening to them discuss what would be the best treatment to start with. I joked that I was looking for a magic cream, that I wanted to feel better and start walking again. She looked at me and offered encouragement, that if this particular pill didn't work, we can try others. To not give up, we'll find something. Contrast this with the dentist that explained that I could lose my teeth. Young. Or with the prospect of eating only blended foods and this is a welcomed trend - optimism.

So I started taking Neurontin and Lodine this week. You can hear me whine about how sleepy it has made me here and here. But I am thankful for hope and a doctor that listens.

Worse than the disease

2007-03-06T08:38:00.000-08:00

I'm seeing the doctor this morning, and willing myself to be open to trying a new pill/med/poke in the eye, in hopes of getting a little relief from the neuropathy that is coloring my world. I am also hoping (I am a little delusional) that the 'cure' isn't worse. It's usually a trade off.

I checked my email just now and found this little gem from ChronicBabe. Gotta love a little pharmaceutical humor.

Grateful

2007-03-05T22:05:00.000-08:00

I don't feel grateful, just so you know. I feel bad saying that, but the house is quiet and between you and me, the day has been long. I can't point to any one thing and complain, but everything is exasperated when I am in pain. I finally mentioned I am having nerve problems to Zack's teacher, which I know should not be said in passing but how else do I explain that frankly I can't use a paper cutter today. My motor skills are funky. Even typing is wonky tonight.

So, enough whining. I have a doctor's appointment in the morning and here's hoping that there will be something Harry Potter magical in the medical cabinet, just waiting to make me feel better. I am banking on it.

*****
A couple of things I am thankful for:

*Greg calling late tonight (he is out of town). He was rummy and tired and excited about his new position.
*Spunky kids
*New friends
*Old friends and brand spanking new babies
*My supportive family, always there

Sneaky

2007-02-28T14:49:00.000-08:00

It is difficult to explain to the onlooker what having an autoimmune disease is like, for when the body takes aim, at itself, the symptoms vary from person to person and from time to time. So in the end, there is no coalition of forces, no army of women that personify the illness. The definition is fuzzy while the disease waxes and wanes. The pain bounces from joint to joint; my eyes burn and then my hands. My feet either develop blisters (I can't sense any irritation) or they burn and tingle. Meanwhile, my obligations are pretty steady. I lug a rather invisible disease - no one knows or quite possibly cares, that I am sick. So I do the best I can, explain when I must and try not to become that mother, defined by an endless list of complaints. For I am more than my pain, more than a label - I'm just trying to make the best of it.

Checking in

2007-02-21T20:34:00.000-08:00

I didn't fall off the planet - see I'm still here. But my denial is starting to wear off. This is less of a defeat and more of an admission. I have been hoping that because I have been feeling so good, so normal, that the whole chronic illness thing was some anomaly, some bad dream I cooked up for attention. I've got nothing against hope because I embrace my optimistic nature - just look at my Mom. She doesn't mope much and it serves her well. Attitude (cringe, I know how goofy it sounds) does play a part in living the lush life.

A couple of weeks ago, I started getting a rash. A sort of invisible, icky itchiness that woke me from my sleep. Then I got a cough (probably a virus), the pain in my side returned and oh, don't forget the throwing up and gimpy right leg again.

As I sat on my couch, contemplating who I should call, it occurred to me that I was due back to see both my rheumatologist and my neurologist in November. (I am supposed to see them every 3 months.) Calling now becomes awkward and I feel ashamed - embarrassed I didn't come back like I am supposed to and some strange remorseful guilt for being sick in the first place. I still can't shake the feeling that if I eat right, do everything right, I will be in the clear. I know that I didn't ask to get sick but my actions speak otherwise. I somehow believe I really can control my life, and by extension, I won't have symptoms anymore. I guess I need to make some calls today. Set up the appointments. Call it pragmatic hope.

Continued glee

2007-01-05T17:20:00.000-08:00

I have a new post over at www.mamamilton.com - still slobbering over feeling well. (I admit, I am geeking out over my newfound gooey goodness.)

Writer's block by health

2006-12-27T19:17:00.000-08:00

I haven't been posting here much. I have been feeling so good, I honestly have lost some interest in talking about illness. I think for now, I will be posting my thoughts about chronic illness on my main blog, www.mamamilton.com, under a category Much to My Sjogren. Maybe I will return at some point.

I am beginning my first novel and some other projects. Life is good.

Stealing from myself

2006-12-04T12:34:00.000-08:00

The kids and I are sick. Very sick. I had just enough energy to write one post. Here it is:

Postcards from Influenza

Backstory

2006-11-28T11:41:00.000-08:00

There always seems to be a back story. The reason I am hesitant to rush to the doc with another symptom, yet another complaint, is that I have complained about this before and still don't know what is wrong. When I was pregnant with Zack, my Midwife thought it was my gallbladder. But the ultrasound showed no gallstones, so I thought that was the end of that. I first went to Dr. Brown, my naturopath, for this pain, in the same 'gallbladder, liver' area, about three years ago. I tried castor oil packs and changed my diet--the pain seemed to go away. Only to return. Can the gallbladder become inflamed and then get better? Six months before I had an appendectomy, my Mom had taken me to the ER with stomach pain. Is this the harbinger, or do I just get belly, or rather, rib aches?

Holiday cheer

2006-11-27T16:46:00.001-08:00

Sometimes they make nice.
Originally uploaded by mama.milton.

I have had pain in my upper right side off and on since Thanksgiving morning. And nausea. Not so much fun. When Zack went to school this afternoon, I decided to take a nap. I was feeling a little blue--I don't want to make an appointment; I don't want to be sick. I felt like I needed this nap, but felt a little deflated because there are many things I wanted to do this afternoon.

I woke up refreshed. I also woke up to snow. I knew the kids would be thrilled to catch a change in the weather after so much rain. They spent the afternoon throwing snowballs and rolling in the snow.

My spirits were lifted. I will call the doctor tomorrow if I continue to feel bad. My desire to feel good sometimes overrides common sense.

Spelling and memory

2006-11-22T14:51:00.000-08:00

I was rereading one of my posts yesterday and I saw spelling errors. A couple of words I missed somehow. I have always been such a stickler for correct spelling, so I found this out of character--and troubling.

There is some debate about the validity of 'brain fog'--cognitive difficulties associated with Sjogren's Syndrome and other autoimmune disease. I have noticed changes in myself over the past few years. I soon will be 36; older for certain, but definitely not a candidate for dementia yet. I guess I have always been a bit preoccupied, but this is something more. It's a search for words, names, the things I know are in there somewhere. Maybe I am just tired, busy with the kids. I sure hope so. This lack of brain power scares me.

Back pain report

2006-11-21T09:20:00.000-08:00

When I left the ER in October 2005, the doctors concluded the pain, weakness and difficulty breathing was from a herniated disc in my neck. My neurologist dismissed this diagnosis immediately; it never made sense to me either considering I hurt my neck when I was 18. (In a cheerleading accident. Ooh, that sounds dramatic. Simply put, avoid catapulting a cheerleader from your calve onto your shoulders at 6 am. She could, and did fall forward onto my head. My neck was very sad. And my 8 am Greek class sure got interesting on muscle relaxers.) This was an old injury. We later discovered the reasons I was miserable.

But my neck has been hurting me, and not all my pain is due to sjogren's, I am sure. I get the impression there's not a lot of great solutions out there when your spine is injured . Gee, where have I heard that before.

I saw this segment this morning on GMA. Dr. Timothy Johnson discussed the reality that most back and neck pain is related to the muscle, not the spine. Surgery doesn't solve this problem. There is a theory out there about injecting the sore muscle with a needle, to increase blood flow. This seems to mirror some of the theories posited by yoga, acupuncture and massage.

Something to consider:

http://abcnews.go.com/Health/story?id=2668782&page=1

Meanwhile, I am using heat this morning to get through the day. It'll do.

Charlatans

2006-11-16T12:25:00.000-08:00

I am a big believer in alternative medicine. I think belief is important in all medicine. Pharmaceuticals are driven by science, but there wouldn't be medical trials with placebos if belief didn't influence outcome.

We experienced great results with my son when he was 2 and 1/2 when we sought help for chronic diarrhea. A homeopathic solution from our Naturopath brought substantial relief for $5--and that's after we saw many doctors and he had been tested for cystic fibrosis and celiac disease. I have great confidence in this doctor because she personally cares for my family and she's not afraid to refer me to a MD when it is necessary. She also encouraged me to take prednisone when it is prescribed. I trust her judgment, even after a few treatments we tried actually exasperate my neuropathy. It's a good partnership.

But I think there are limits to alternative care. And there are lots of people parading around as experts that want our hard earned cash in exchange for promises of better health or even a cure.

Last winter, I was sick but we still weren't 100% sure why. My neighbor was genuinely concerned and began telling me about a product her husband was selling. (FYI-I hadn't actually spoke to him in over 6 months. She had kicked him out for physical abuse, complete with restraining order and then invited him back home all with my mouth agape. Not relevant to the story here, but it does give the backstory for why I had a rocky relationship with him at best.) I watched a DVD produced by the company, but couldn't find any solid evidence to support its claims. She was sure this powder was the cure. And for only $160 a month. For sugar. (Found naturally in fruit and aloe vera, I imagine it is good for you. But I'd rather eat the fruit.) When I politely declined at the bus stop each day, her husband started sending me emails. He really had no idea what my symptoms were, he was adamant he could fix it.

Imagine my surprise when I was working one evening at Borders and the hubby strolled in and started pushing his wares on me. His basic premise was that he could cure me and that my pain and increasing disability were basically my own fault for refusing his treatment. I have worked in public for many years and I can be graceful under pressure, but this conversation confounded me. When I told him that I shared his concerns with allopathic philosophy, that doctors and pills have limitations too, he looked confused and started mumbling something about aloe vera. Right there I knew he didn't know what he was talking about. He was a salesman by trade, and in another scenario, I might have tried it because I was scared and hurting. And that my friend, makes me angry. It makes me angry that on top of doctor's appointments, and blood tests, and exhaustion and pain, that I had to ward off a company looking to exploit my desire to get better.

Eventually he stopped bugging me. They moved away after school ended and I don't hear from them anymore. But it made me realize that somewhere between my desperation to feel better and some one's desire to capitalize on it, I must be my own best advocate. It's no time to be a wuss.

Hiatus

2006-11-10T09:14:00.000-08:00

It's been two weeks since I have updated this site. My apologies. I have been mulling over what my goal, what I hope to accomplish by writing about chronic illness-- a mission statement for my lowly site. I don't want MtMS to become your one-stop shop for whining. I am just one woman living with pain. But I am not alone. I hope as I stumble through these changes in my health and life, I will help someone else along.

I have been planning a couple series of posts. Hope you'll join me along the way.

Happy feet

2006-10-26T16:21:00.000-07:00

I joined a small Mom's group through my church this fall. I say it's small now, but with 5 out of 7 women with child, we are scheduled to grow. These delightful ladies have suggested I could join them in the procreative fun--they don't want me to feel left out come spring--so I reassured them that I would be just fine. No really. Me and my mister are done with making babies. I'll just admire theirs.

As we settled down for our bible study, I thought the room seemed cold . Then I felt a slight breeze coming through the window, because IT WAS OPEN. It occurred to me that I was surrounded by prego mamas, warmed by an increased blood flow and girly hormones. I have Raynaud's, like my Mom before me. My circulation doesn't work correctly, so when I get cold or chilled, the blood essentially stops flowing to my feet and hands. (It is a painful spasm that slows the blood flow.) When I first saw the rheumatologist, Dr. Bong (his real name), applied mineral oil to my cuticles and examined the blood vessels in my fingers. (And here I thought I was going to get a manicure.) I guess I am in the beginning stages, where the capillaries start to turn away from the tips of my fingers. Though rare, the lack of blood flow can cause gangrene, so it is important to keep warm.

Last winter, my Mom and Dad gave me a wonderful electric throw. I used it nearly every day for 6 months. My kids love to snuggle in my 'magic' blanket. It's a great investment. I am searching for better socks (I usually wear several pairs with slippers in the house). I am considering getting a pair of "Warm Me Ups", although it will be tough to do anything with them on. I am a big fan of thermal underwear, the new sleeker kind. I will start taking Verapamil soon, which is also helpful in the prevention of cluster headaches. (If some cheesy marketing company were to produce a commercial for this drug, it would warn you that it can cause constipation and light-headedness. I've found this to be true, but sometimes a necessary evil.)

So, I guess I will be an oddball when I bring mittens and a woobie next week. Well, for a little while anyway. I'll soon fit right in with the babies.

Take a hike

2006-10-22T18:58:00.000-07:00

Lex and Zack
Originally uploaded by mama.milton.

This week has been full of ups and downs. Wednesday my neuropathy flared; my hands and feet burned and tingled. I cancelled my plans to attend a First Aid class with Lexi's Girl Scout leader. I was miserable. By the next day, I felt much better and roughhoused with Zack and my 3 1/2 year old nephew, Austin during my sister's birthday party. Such has been my experience with Sjogrens--I can't predict my symptoms or their severity on any given day.

Today the pain and stiffness came back. My joint filled with gum, I made my way home from church and plopped down into my big, cozy chair. I cried, although I am not sure why exactly. I have been in more pain and certainly weaker. Maybe this is an emotional component. I am not sure. I took a short nap and decided to proceed with my plans to take the kids on a short hike around Lacamas Lake. The sunny days are limited; I will have small children for only a short while. I get the impression the pain will be there for me another day.

Sjogren's Walkabout

2006-10-19T12:23:00.000-07:00

Just found this on Chronic Babe:

http://www.chronicbabe.com/bits/archive/2006/10/do_the_sjogrens.php

Hopefully national events, like this one, will promote more awareness about this most common of autoimmune diseases that so few people know about.

Now it's time for Neti

2006-10-13T07:47:00.000-07:00

It's the fifth day of my cold and I am feeling pretty good. I am particularly glad I am on my feet today as I am chaperoning for my son's kindergarten class trip to a pumpkin patch. I love pumpkin patches and will find anyway to purvey my favorite gourd, even if it means riding a bus with 5 year olds.

I thought I would pass on one of my strategies for avoiding sinus infections. It's a little gross, but effective. Well, at least it works for me sometimes.

I use a neti pot. It's this little teapot looking thing. I place warm, pure saline water into my neti and flush out my nose. Here's the part that scared me at first--I pour water into one nostril and it exits out of its twin. I was certain this would cause me to drown, but if I breathe through my mouth, I am fine. Neti pots provide much needed moisture to the nasal passages and clean goop out. And if you do get a sinus infection, it actually feels good.

I watched an episode of The Office recently, the Christmas party one where Dwight gets the teapot intended for Pam and sees its neti-potential. Now when I neti, I can't help thinking 'I am Dwight'.

They say it's common

2006-10-11T08:46:00.000-07:00

I have a cold. A plain, boring cold. I used to pop OTC cold meds to get through the day, like everybody else. But since the root of Sjogren's syndrome and its unpleasantries, is dryness, I am avoiding taking something that will further dry me out. I tried taking dayquil for the first few days of my last cold, and I ended up with more nerve pain and it took my eyes days to recover.

I am trying something new this time--I am taking nothing for my cold and resting. I didn't have anything planned, besides writing, yesterday afternoon, so I took a big, slobber-on-the-pillow nap. Like a baby. With a snotty nose.

I am hoping that giving up some primetime will afford me a quicker recovery. The pattern has been: a cold, followed by a sinus infection and cycle of cluster headaches. Which fills me with dread. And if I do the math, by the time I recover, one of my kids is bound to have another cold.

So, I will wash my hands, drink my tea and dream of better days.

In case of emergency

2006-10-05T13:23:00.000-07:00

My Grandma was found in her driveway Tuesday, hunched over a cardboard box. She apparently had collapsed sometime in the afternoon, laying there, alone. When some friends from out-of-town arrived, it was clear she was confused, not able to speak in full sentences. She owns a dog kennel, and works harder than most people half her 75 years--although she told the doctors in the ER she is retired. After three days in the hospital she is on her way home, with no diagnosis or instructions. It could have been what they call a 'mini-stroke'. We just don't know.

Here lies the dilemma--what now? My Grandmas lives alone, if you don't count the dozens of dogs in her charge and the dogs she boards. She owns a public business with enough traffic that she has many friends, but there are slow days and she is isolated in her rural home of 35 years. She doesn't answer her phone at times; she's busy. She has severe asthma, but mows her lawn despite heat or smog advisories for the elderly or those with lung disease. She doesn't think she is either. She is stubborn. She is strong willed. I want to respect my Grandma's feelings and her passion for her lifestyle. I know it must be hard to face growing old. But what would have happened if no one came down the driveway that day? And is it fair to her family when she refuses to make plans to reduce her workload, or write out a contingency plan if she is unable to care for her dogs? I don't know.

But it's got me thinking. If I have a medical emergency, there are immediate concerns that have to be dealt with--namely my kids. So I am considering what I need to do to make a difficult situation better, just in case. I know the kids' schedules and all the pertinent phone numbers, when the bus comes and when homework is due. If I was sick and needed care, having instructions available may make me feel less worried and put my friends and family at ease. Somehow we made it through emergencies over the past year, but by the seat of our pants. I don't plan on living a little life because I could get sick. But, reality demands I take responsibility for my lush life, that my eyes are open.

One year later

2006-10-05T13:07:00.000-07:00

Do you know where you were last year at this time, this week? I know exactly where I was all week in 2005. I was parked, lying down, on my gushy green couch, experiencing what is known as a spinal headache. I know a lot about headaches. I'm familiar with migraines, SUNCT, tension and cluster headaches; I am versed in describing the what, how and where of head pain. Spinal headaches, it turns out, made my whole head and neck hurt. Apparently, my stomach felt left out, so I threw up too. Not a great time. But I had to marvel at one of its defining traits-- I could find relief by laying down. This was great news when the kids were at school, but a real bummer during carpool.

This is also the only headache I know of with a distinct cause and possible cure. The headache came at the hands of an inexperienced doctor, performing their first spinal tap in the ER. I signed a release form, and consented to being his guinea pig because I was ill and didn't know any better. Of course, I watch enough Grey's Anatomy to know all doctors have to start somewhere, but I've done my duty and will be much more selective about who pokes needles into my spine. When things go well, there's one stab and the patient lies on their back to allow a clot to form around the hole in the spinal cord, so you don't leak spinal fluid. In my case, several holes were made by the intern before the doctor in charge took over and got the sample they needed. I didn't find out why my arms were too weak to hold a blow dryer, or why it hurt to breathe that day, but at least the doctors that day were confident I didn't have GB or MS.

So I spent the next few days on my couch. I read compulsively, so I wasn't bored, just worried about taking care of my family. I waited for the headache to resolve. It didn't.

When I saw my new neurologist later that week, I explained to him I would have to lay down during my appointment. It was my strategy for that week. I would walk as fast as I could to the bathroom or to feed the kids before laying down, wherever I could. I realized this was getting ridiculous. I watched my son's first soccer game laying down on the bleachers. I reclined my seat at red lights. Clearly, I needed help-- I just had enough experience with other headaches to know that sometimes there isn't much you can do to fix it. Of course, the neuro knew better.

'Would you like me to fix that?'

'Yes, please.'

A headache that can be fixed, well imagine that. That's when I heard of a blood patch. It's exactly what it sounds like. The doctor pumped blood right into the area where the LP took place. For the next 24 hours, I had to remain flat on my back, while it took. But the relief was immediate. And I haven't looked as rested before or since.

2006-09-26T15:16:00.000-07:00

When I first became sick, and no one knew what was wrong, I used to pore over internet articles and try to figure it out for myself. It's what I do anytime I want to know something--I research. This was a bad idea. A doctor would mention some possible disease, and I would stumble upon all kinds of frightening pictures complete with sad memorial music and angels--websites that are meaningful to their authors but scary. I am 35. I don't plan on packing it in anytime soon. It's bad enough to feel sick and weak, I mean I knew something was amiss, but I was scaring myself even more with things I shouldn't worry about. I promised my husband I would stop my compulsive reading until we had some kind of diagnosis. After six months or so, lo and behold, I had one I could definitely live with-Sjogren's Syndrome. Sjogren's is an automimmune disease that primarily affects the moisture-making glands of the body, so think eye, mouth. But it can be systemic and cause fatigue, arthritis and neuropathy, so think me. For about 3 years now, I have also been getting migraine and cluster headaches. (Sounds like a subscription to some messed up periodical.) There's no sweet, Christian way to describe cluster headaches. I won't even try. But I liken the pain to childbirth, that is, if the child in question was trying to burst forth from my right eye. They don't call them suicide headaches for nothing,dear. And I have a wee benign brain tumor, cystic in nature, that we (my superhero doctors and me) keep tabs on. Tumors can be tricky and all so I bribe mine with promises of free rent in my noggin in exchange for it to stick to its no-growth policy. I like slacker cysts. So I guess that qualifies me to write about living with chronic illness and pain, but by no means makes me a medical expert or authority, just a patient like you. You need to get your own superheroes for that role. And I believe nothing heals like humor, so I'll try to keep whining to a minimum. You don't have to tell me someone else has it worse out there, because believe me, I know, I saw the pictures.

Greetings!

2006-09-20T12:48:00.000-07:00

On my way to creating my first blog, mamamilton, it occured to me that I have a lot to say about my life since being diagnosed with an autoimmune disease, Sjogren's syndrome, about a year ago. I decided to create a second blog, dedicated to living well when you are feeling anything but.