Much to My Sjogren

RSS Feed Homepage

Articles: 1, 2, 3

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
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

Dialogue
2007-07-03 07:03:00
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 witha resident 'performs' a spinal tap, biffs, and you get poked againthe headache that followsand 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...
More About: Dialogue , Dial

File this under 'who cares'
2007-06-30 20:26:00
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 refl...
More About: File , Under , Ares

Gravel
2007-06-17 03:07:00
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
More About: Gravel

Me and the razor
2007-06-05 02:04:00
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
More About: Razor

Going down
2007-05-25 03:35:00
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
More About: Going , Goin

I got some love
2007-05-23 03:58:00
I forgot to mention I got some props recently: http://browserlife.blogspot.com/2007/04/r ave-of-day-for-april-18-2007.htmlThanks!
More About: Love , Some

It pays
2007-05-22 20:53:00
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
More About: Pays

My secret boyfriend
2007-05-22 03:13:00
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.
More About: Boyfriend , Secret

One week later
2007-05-17 20:14:00
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 ma...
More About: Week , Late

Stress
2007-05-10 19:12:00
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.
More About: Stress , Tres

Paranoia
2007-05-02 00:35:00
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 m...
More About: Para , Paran , Noia , Paranoia

Creature from the green lagoon
2007-04-27 00:56:00
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
More About: Green , Goon , Creature , Lagoon , The G

All better
2007-04-20 03:53:00
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 br...
More About: Better , Bett

Common
2007-04-16 17:32:00
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
More About: Common , Comm

Dealing with difficult people
2007-04-14 01:43:00
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 tha...
More About: People , Deal , Ealing , Diff

Feeling pretty darn good
2007-04-11 05:47:00
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...
More About: Pretty , Good , Feeling , Feel

I wasn't begging for spam
2007-04-06 20:50:00
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
More About: Spam

Begging for Prednisone?
2007-04-06 19:24:00
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,...

Unpacking
2007-04-03 04:51:00
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...
More About: King , Packing , Pack

Two pills for me, please
2007-03-13 20:14:00
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...
More About: Please , Lease , Ease , Pills

Update
2007-03-09 18:28:00
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 antibiotic...
More About: Update

Worse than the disease
2007-03-06 17:38:00
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.
More About: Disease , Ease , Seas , The D