Owner: Much to My Sjogren URL:http://www.muchtomysjogren.com Join Date: Sun, 22 Apr 2007 21:12:51 -0500 Rating:0 Site Description: Living the lush life in a dry bod. Site statistics:Click here
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 breat
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 Read more:Common
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 that s Read more:people
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 di Read more:Feeling
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
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, an
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 no
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 it Read more: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 antibiotics w Read more: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. Read more:disease
Grateful 2007-03-06 07:05:00 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 2007-02-28 23:49:00 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. Read more:Sneaky
Checking in 2007-02-22 05:34:00 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 becom
Continued glee 2007-01-06 02:20:00 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 2006-12-28 04:17:00 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. Read more:Writer
, block
Stealing from myself 2006-12-04 21:34:00 The kids and I are sick. Very sick. I had just enough energy to write one post. Here it is:Postcards from Influenza Read more:Stealing
, myself
Backstory 2006-11-28 20:41:00 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 2006-11-28 01:46:00 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. Read more:Holiday
Spelling and memory 2006-11-22 23:51:00 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 2006-11-21 18:20:00 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 d Read more:report
, Back pain
Charlatans 2006-11-16 21:25:00 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 bett
Hiatus 2006-11-10 18:14:00 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. Read more:Hiatus
Happy feet 2006-10-27 01:21:00 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 th Read more:Happy
Take a hike 2006-10-23 03:58:00 Lex and ZackOriginally 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 pa
Sjogren's Walkabout 2006-10-19 21:23:00 Just found this on Chronic Babe:http://www.chronicbabe.com/bits/archive/2006/10/do_the_sjogrens.phpHopefully national events, like this one, will promote more awareness about this most common of autoimmune diseases that so few people know about.
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 Read more:Creature
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 my e Read more:Paranoia
On being happy. 2007-05-06 15:40:00 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 h
Moonface rising 2007-05-09 02:55:00 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 syndromePrednisone
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.
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