much to my sjogren

splash

noreply@blogger.com (Lisa Wheeler Milton) — Tue, 21 Jul 2009 20:48:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Fri, 14 Nov 2008 16:17:00 +0000

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)

noreply@blogger.com (Lisa Wheeler Milton) — Thu, 06 Nov 2008 14:00:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 05 Nov 2008 14:44:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Tue, 23 Sep 2008 01:29:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Fri, 05 Sep 2008 19:08:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Tue, 29 Jul 2008 16:49:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 23 Jul 2008 01:22:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Tue, 27 May 2008 01:40:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Mon, 05 May 2008 02:17:00 +0000

“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

noreply@blogger.com (Lisa Wheeler Milton) — Thu, 17 Apr 2008 18:09:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 05 Mar 2008 06:01:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 20 Feb 2008 05:03:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Tue, 05 Feb 2008 04:17:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 30 Jan 2008 23:46:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Thu, 10 Jan 2008 02:16:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 26 Dec 2007 15:44:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 05 Dec 2007 17:17:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 14 Nov 2007 17:49:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 07 Nov 2007 02:20:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Tue, 30 Oct 2007 23:29:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Thu, 25 Oct 2007 02:22:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Tue, 23 Oct 2007 23:15:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Thu, 18 Oct 2007 00:31:00 +0000

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

noreply@blogger.com (Lisa Wheeler Milton) — Wed, 10 Oct 2007 21:22:00 +0000

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.
__________
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