Much to My Sjogren

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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
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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.
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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 be...
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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.)
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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.
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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
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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?
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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.
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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.
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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. Surger...
More About: Report , Pain , Back , Back Pain , Repo

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 b...
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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.
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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...
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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...
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Sjogren's Walkabout
2006-10-19 21:23:00
Just found this on Chronic Babe:http://www.chronicbabe.com/bits/arch ive/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.
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