Wednesday, January 4, 2012

I Wish It Had Been A Bicycle

I suspect that this bus was THE ONE. Found here. 

My post Sjogren's Reality recently received this comment by Anonymous:

I was recently diagnosed. I don't have severe symptoms. That is probably why I feel very optimistic and want to believe that I will not be the victim of my illness. I have enjoyed a very active life, and without knowing I have suffered fatigue, dried eyes, dried mouth, stiffness, etc. It was just life; I lived it without feeling sick. I wonder if I will start “feeling sick” now that I know that it is not life, that it is Sjogrens.

Hm. What an interesting perspective - she suffered fatigue, dry eye, dry mouth and stiffness without knowing that it was an illness. I'm wondering if the onset of these symptoms was ssssllllooooowwww in her case, and in sneaking up upon her, her awareness was also slow in appearing. Of course, that's just my guess.

Not so for me. In a rather short period of time, I felt as though I had been smacked head on by a speeding bus loaded down with obese passengers each hauling over-loaded suitcases.

Wham! Julia's face swelled in a mumps-like fashion, every inch of her body hurt, and she found herself trying to bribe co-workers with twenty dollar bills to walk the length of the office corridors since she just. couldn't. do. it. anymore.....and was miffed when nobody took her up on her offer.

Of course, everyone's experience is different with this disease. I am optimistic for Anonymous. Gosh - if you feel as though you are just dealing with what has become "life" and is still able to function in what you consider a normal fashion, I say, YIPPEE!

Go get 'em, girl!!

There's oodles of Sjoggies out there that do just that. These lucky folks have limited severity of symptoms and the disease just remains at a nuisance level for the rest of their lives, and I hope against hope that this is your case, too. It's not only possible - it's probable.

Just stay out of the bus lane.


Unknown said...

I'm like you, Julia: I went to bed healthy one day and woke up with full body arthritis the next. Medications have helped so much, but I've been on an AI roller coaster ever since that morning.

But, like you said, Sjogren's is a different disease for everyone who has it. And maybe people whose symptoms come on more slowly can adjust? Also, maybe if someone has just SJS and not the AI cocktail many of us deal with, it's easier to deal with?

Whatever the answers to these questions, I hope that Anon keeps doing well!

cargillwitch said...

I have been more like anonymous to this point. It wasn't until I realized I coudn't handle stress anymore that i took notice to what had been slowly evolving in my body over the course of many years. Heck I did a 100km race this passed summer! I just have been a drill sargent with my physical self for so many years I didn't listen very well when it was giving me slow and progressive signals that all was less then well. It took nearly having a nervous breakdown to assess what was happening.
I had lost my sense of smell about 6 years ago, had to use biotene everything to keep the canker sores at bay , drank constantly and sucked on throat drops like they might be pulled from the shelves.I just chalked up the fatigue to perimenopause, farming, a full time nursing job, two hour commute and six kids! Even after using eye drops 24 /7 and having a mother with Sjogrens I still thought it was all just aging and hormones.
Call me a slow learner but once I had the diagnosis suddenly I seem to be much more aware of all the smaller stuff becoming larger . Only because I now know? or am I just now paying better attention? who's to say?! I do hope to go as long as I can but I know having seen it progress in other family members that it doesn't go into remission .

Connie said...

I too have been more like anonymous as far as symptoms. At his point I am at a "very probable" Sjogrens diagnosis. My symptoms have come on slowly, slight dry eyes, one week of scary brain fog and fatique that felt like the plug was pulled on me. I too chalked it up to perimenopause, working long hours being self employed, getting older, out of shape or just life. It wasn't until earlier this year when my finger joints started aching that I received a wait and see probable diagnosis of Sjogrens. I have often wondered would I feel better, or not think about it as much if I had not been told that I definately have something AI going on ? For me a diagnosis would be bitter sweet.

LH said...

I was more like Anonymous for a couple of years. The main symptom was the dry eye. I ended up at the eye doctor with scratched corneas every few months. Once it ulcerated - thankfully he got it whipped. My mouth was dry all the time and I was afraid I was diabetic. Got tested and nope, nothing. Then the joint pain started and the doctors in my little town swore I was working too hard and stressed.Said I needed ant depressants. Finally a genius of a nurse practitioner (who Listened, bless her) said she thought something else was going on and sent me to a rheumatologist. Finally some answers. Sjogrens for sure, maybe RA, and now fibro added to the mix. The bus finally hit me: fatigue, fog, pain, etc. I had to close a thriving business. Hubby says I used to change the world before lunch and now I am upset that I can't.
I just found this blog a few weeks ago and I'm very grateful. I don't feel quite so alone anymore.

Medley said...

I love reading your blog. I've been learning so much from it. I was diagnosed last August with probable Sjogren's but looking back I can see that my body has been "working on it" for years (asthma, allergies, milk allergy, acid reflux, joint pain, I even had a pericardial window 3 years ago.) This past December was horrible - physically (my body reacted in ways that it never had before - random pains, fatigue, brain fog)and emotionally (finally coming to terms with the fact that I might not be able to do the things I thought I'd be able to do.) I teach elementary music and December is always a busy month with concerts and end of semester things. I was never so happy to see Christmas break come and I could sleep!
Today I feel really good, one of those days that I think "there can't be anything wrong with me" except that my dry mouth is reminding me that there is. I went to the dentist yesterday and got one more prescription (strong flouride toothpaste - whoopee!) and a moisturizing mouth rinse. One more thing to add to my daily routine of meds.
It's interesting to read that Sjogren's is different for everyone. There are so many things that I wonder about, like whether my upper back hurts because of my asthma, acid reflux or something else. And is the fact that my hip hurts so much when I lay on my side at night that it wakes me up and I have to turn over part of the joint pain that comes along with this.
The other day I was lamenting to my husband that I felt like my life had been stolen and he made the comment, "Me too." It suddenly occured to me that his life has changed too, I'm not the same wife I used to be. He's very supportive but it makes me feel bad that this is affecting him, and my whole family, in ways that I never thought of before. I'd been so focused on what was happening to me that I hadn't really considered what was happening to all of them too.
Thank you for all of the information you provide and thank you to all of the people who post. So far I don't have anyone in my community that I know who also has Sjogren's so reading the other posts helps to know that I'm not alone.

stephanie said...

6 or 7 yrs ago, my eyes/mouth suddenly, almost in one day, felt like the moisture was sucked out. I went to an eye doc who, the very first visit, suggested I get tested for SS (smart man). For the next several yrs I thought "hey, this SS isn't so bad, just dry eyes and mouth" (even tho it was horrible for me to move to glasses from contacts; who knew I was so vain?). Then last fall my joints started killing me. After several steroid dosages, the pain suddenly went away in Feb 2011. I started PT/exercises (am I glad I did!) and then in Oct BAM the joint pain returned. My philosphy at this stage: Everyone has something going on in their lives; if they don't yet, they will someday. A new normal: Life is fluid. As my husband says: That's part of it, which I appreciate as it is very practical.

Omgrrrl said...

Hi Julia! I stumbled upon your blog and am proud to become a follower. My mother has Sjogrens. You humor, perspective and insight will be helpful for me to understand and share in her journey.

Anonymous said...

Sorry I did not reply sooner... been a bit busy.
Indeed, the symptom that was unusual and suddenly came for a month and left just as it came was the hand stiffness. I told my doctor, but she told me it was probably arthritis. Since several of my family members have it I got tested for it, and Sjogrens appeared to be the culprit.
It was only then that I was asked if I had dry eyes, which I did, but thought it was usual for someone that wears contacts. I was also asked if I had a dry mouth, again that was the case, but I always blamed it on the fact that I do not drink the recommended 8 glasses of water per day. Last, I have felt the fatigue, but when I was working about 50 hours per week, so I blamed it on the amount of work I had.
So, I think you are right Julia, my symptoms have been there hidden and have been showing up very subtly. I have not experienced that heavy weight some of you have. I definitely consider myself lucky.
P.S. I love your blog

thouartloosed said...

I thought it was "just life" too. I didn't feel sick; I felt older than I was and so very tired. So much so that when I was initially diagnosed, I was relieved because there was a physical REASON to feel so worn out.

Anonymous said...

You know, though, sometimes our perspective is formed by the doctors we see. Last year, a r heumatologist at an Very Important Medical Research Hospital said my at-times-overwhelming fatigue was "just the stress of daily life." No kidding.