Much to My SjogrenMuch to My SjogrenLiving the Lush Life in a Dry Bod - making good on living well even when you feel anything but Articles
rains
2008-05-27 03:40:00 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
2008-05-05 04:17:00 “I want others with a chronic illness to go find their own mountains.”Wendy BookerI 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. A... More About: Inspiration
have drugs, will travel
2008-04-17 20:09:00 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 ev... More About: Travel , Drugs
walk in the park
2008-03-05 07:01:00 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... More About: Park , Walk
thinking up hip hop nicknames: how about Puff Milton
2008-02-20 06:03:00 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... More About: Milton , Nicknames , Thinking , Puff
it still smelled like bergamot, part one
2008-02-05 05:17:00 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? More About: Part
lessons from a 2 year-old
2008-01-31 00:46:00 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. More About: Lessons , Year
clusters ceased
2008-01-10 03:16:00 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... More About: Clusters
update: stupid cluster headaches and blue fingers
2007-12-26 16:44:00 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... More About: Blue , Stupid , Update , Cluster , Fingers
don't explain
2007-12-05 18:17:00 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
2007-11-14 18:49:00 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 allergen... More About: Girl , That Girl
good golly gullet
2007-11-07 03:20:00 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 ... More About: Good , Olly
anxiety is setting in
2007-10-31 00:29:00 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. More About: Anxiety
cupcakes for a cause
2007-10-25 04:22:00 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
2007-10-24 01:15:00 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. More About: Update
verdict: upper endoscopy
2007-10-18 02:31:00 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 swallowshatzki ring - benign ring of tissue in the esophagusmotility disorder - basically the muscles don't work rightI 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 ... More About: Verdict
nightmares and being able to adapt
2007-10-10 23:22:00 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 com... More About: Nightmares , Ares
but I just bought food
2007-10-03 22:55:00 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. More About: Food
elixir
2007-10-02 06:33:00 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
2007-09-26 01:40:00 My favorite doctor is back tonight, insulting friends and consulting janitors. Good times, good times.
goes down easy
2007-09-21 22:12:00 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.*****Technorati Tags:gastroenterology, dysphagia, swallowing problems, sjogrens, soft food dietAdd to: Technorati Digg del.icio.us... More About: Easy , Goes
this is what denial looks like
2007-09-20 07:12:00 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. More About: Denial , Looks
hard to swallow
2007-09-06 01:44:00 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 ... More About: Hard , Swallow , Allo
while I was away
2007-09-04 01:05:00 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 liv...
Hydrate
2007-08-18 15:33:00 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. More About: Rate
Catching up
2007-08-08 02:22:00 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
2007-07-27 00:50:00 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 canHere'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 More About: Tips
The (non) Dairy Queen kicks wheat to the curb
2007-07-26 03:28:00 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 More About: Wheat , Queen , Dairy , Kicks , Kick
Needless worry
2007-07-13 07:41:00 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... More About: Worry
Yankee doodle doctor visit
More articles from this author:2007-07-04 05:56:00 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 t... More About: Visit , Doctor , Doodle 1, 2, 3 |
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