In spite of all your suffering, Lovey, you made me laugh a little today because you have such a gifted way of saying things that brings some humor into the situation. CRS -- I had a good laugh at that one although I know it's serious. Humor is what gets us through sometimes.
Lovey said:
Man, this one hit me like a ton of bricks. I had to go have a good, ugly cry before I could formulate a response. Tomorrow is my husband's and my 32nd anniversary. Two years ago we were in Washington DC, walking for miles everyday in 106° heat (the avg. temp that week was 103°) and stopping only to eat and decide what to do next. Two months after that I was being life flighted from my car crash, but was on the road to recovery and looking forward to working again. A year later Sjogrens was diagnosed and it's been downhill from there. I used to be: Unstoppable. I did interior design and could spend 12 hours hanging wallpaper on 16' high walls, paint until I couldn't see straight, crawl around on someone's floor taking measurements for two hours and then draw it all out without realizing it was midnight. I walked up and down three flights of stairs (24 to upstairs, 13 to the lower level) several times a day as well as rearrange furniture at the store I worked at, come home, fix dinner and go for a walk or bike ride with my little Lydia, listening to her glorious chatter the whole time. People used to say they wished they had my energy and strength. I knew every single piece of inventory and fabric in that 12,000 sq. ft. store right down to a 3x4 silver picture frame. And now? I can go to the basement with a full basket of laundry, load the washer and get back up the stairs only to sit on the top step for a few minutes to gather the strength to get to the living room. Then I forget that I did a load and leave it in the washer for two days. I also suffer severely from CRS. (Can't Remember Shit.)
I have been in a bad spell the last 2 or 3 weeks and feel just sort of listless. I read back what I've written and as usual I've rambled on but I think this was a subject I've avoided and I needed to get this out. (I admire those of you that give such concise answers in so few words...aww hell...I'm just plain jealous!!!)
Thank you everyone for all you've given me...your ears, your shoulders, understanding and patience when I get in my maudlin mode!
Lovey…what a powerful story…SK…my answers would be much like yours:
able to have a conversation with others without feeling like I should take notes to remember the topic…
able to read and have some idea of what it was that I read…
able to go to work and meet the challenges…
able to wear beautiful shoes…
able to travel, or enjoy just going for a ride without severe pain…
medicine free…
I was dx’d with SS in the midst of a VERY stressful time in my life. I was having dental problems brought on by an error a dentist made in my mouth that caused Atypical Trigeminal Neuralgia. I just left a PT job, because my boss was insane. Additionally, my father had just passed away and his girlfriend was the health surrogate and actually kept bringing him back to life (CPR when he was elderly dying of cancer) in an attempt to get him To change his will to leave everything to her. (I had my suspicions of this but didn’t find out for sure until after he passed). My stress and pain were through the roof. Then…got the SS dx!
Prior to this, I was suffering with migraines and other oddities, but would manage to exercise, work here and there, travel, etc.
Working is now completely OUT
Traveling is very very difficult
Exercising, right now is out and I hope to bring it up to just “difficult”
One thing I Really miss and am particularly sad and concerned about is: I USE TO HAVE SPECIAL /IMPORTANT GOALS
I try not to let it get to me, but I am often “on edge” due to all the many health problems, medicines and doctor appointments I’m juggling
I value any good days (ok, often more like partial days) and am very grateful for them. It has taught me not to sweat the small stuff.For example, when relatives act stoooopid, etc. I just say to myself “it’s not worth my health to get upset about this silliness. I’m going to let this go” and, to my delight, I do!
Wow Nomad! I’m very glad you survived that whole ordeal! I would have asked to be put in a rubber room at some point, so I didn’t hurt myself or others. (Called a 5150 here in California) Personally I would have had an old fashioned smack down with the girlfriend, no matter what condition I was in. What she was doing was inexcusable. You are stronger than you think.
I was able to read all of this today and chuckle at so many of the responses. SK...wow. What a subject...but a really needed one, so thank you. Starbright, if I'd had water in my mouth (which I surprisingly didn't) when I read yours I'd probably have snorted it out my nose! Soooooo true. I can't count the number of times a day I say or think, "OMG where's my water?!!!!". Nomad, I had a situation similar to yours and I think you were generous in referring to your father's companion as "girlfriend". We called ours Psycho Bitch From Hell. I was borderline 5150 and would have had the smackdown had my husband not nearly tackled me to prevent it LOL! (I made do with some favorite salty terms that might have even embarassed a sailor.) Ahhhh geez, I feel some of my humor returning and if it helps anyone else cop a grin, then you've helped me, too! I wish you all a lovely day!