Sjogren's and Michelle's rambling updates

Sjogren's Syndrome.  What is it?  I was diagnosed with this difficult to pronounce disease from my rheumatologist.  I thought, no biggie, just dry eyes, mouth and skin.  For years I've thought, that was it.  Until recently.  A friend of mine told me he also had it.  He seemed to think it was a serious issue.  I wondered why he thought this way...  Then a few days later, I noticed on Twitter that someone I follow had mentioned it was Sjogren's day and had posted a link to a site about it.  This is the first thing I saw:

You can view a larger version of this on the website: http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms

Shocking to say the least.  I had no clue that all of these symptoms were involved!  I have had so many of these, and it hit home with me.  The neuropathy, stomach problems, muscle pain, neurological issues, and of course the dryness.   My doctor seemed to make light of the Sjogren's and so I didn't give it a second thought.  It's a wake up call to me now that I should research something when a doctor mentions it, or diagnoses me with something.  A friend of mine is dealing with complications from this disease, and is slowly on the mend.  It was great to see you last night Dave.  Brenda too!  Thanks again for the scrumptious dinner and red velvet cupcakes which were divine!  Love you both!

Well, to update how I'm doing...  I woke up today in a lot of pain.  It's pretty much all over.  Last night it started with shoulder pain.  I took a pain pill (I haven't had to take any for quite awhile because I had been feeling okay), and I was able to sleep fairly well.  When I woke up early this morning, just getting out of bed was painful.  Letting the dogs out, woof-woof, feeding them and then making coffee was draining.  I managed to make myself an egg for breakfast then crawl back into bed where I am now writing this blog.  Oy vey.  This disease is so unpredictable, annoying, painful, draining, and just a real pain in the ass!  Okay, okay, I know, quit complaining!  Time for some quiet time and to meditate...  Ohm...

I also applied to go to Washington D.C. again in September.  I'll find out by August 3rd if I get to go.  I really hope so.  I am ready this year to have my voice heard!  I'm going limp around the halls of the House on Capitol Hill and speak up!  Last year, I was a bit timid as it was my first time to do advocacy work in person with members of Congress and a Senator.  Not this year!  I'm more vocal, determined, and the issues that have to do with health care and rheumatology are so important to me.  Go Michelle, go Michelle!  Yes, I'll be my own cheerleader!

Another thing I've been doing is working on the online auction that Arthritis Introspective is having in November of this year.  We are having the auction to raise funds for our annual Gathering that will take place here in Houston.  Probably in March of 2012, dates to be confirmed soon!  The Gathering is a wonderful event.  I've met so many great people with arthritis that inspire me, are so uplifting, and are so welcoming.  Great personalities that have a sense of humor too.  I recommend anyone that has arthritis to try and attend the next Gathering!  You won't regret it.  It's changed my life for the better.  So, I've been working on writing letters, sending emails, brainstorming on ideas of which companies to contact.  So far, I'm enjoying it!  It's cool to be doing something important and that I'm capable of doing on my own time, when I'm feeling well.  I've been working with Scott from Arizona on this project.  He's great as he's done this before and has given me a lot of advice and information.  Thanks Scott!

I also want to do a separate artist event.  There's a cool online site where artists can upload their art and people can buy prints, notecards, etc. with the artist's work on it.  So really the artist doesn't lose anything because they keep their original artwork.  I think it is going to turn out well.  So if anyone has artwork or something they'd like to volunteer for the auction, hey, hit me up!  Or just send me money.  LOL!  Donations to AI actually are important.  You can donate at the website:  Arthritis Introspective

Well that's all of my rambling for now!  Hopefully I'll have good news to report later about our auction, going to D.C. (my fingers are crossed), and hopefully I'll be feeling better too.


Enjoy your Sunday! Blogger out! 

Unusually good day!

Today has been a little unusual.  I had a doctor's appointment early this morning.  So last night I wasn't tired and I was worried about getting up in time for the appointment.  I was also worried about the appointment itself.  Once again, I worried for nothing.  The doctor worked things out with me.  My prescription was covered under my insurance, and the other one she helped me with the mail order pharmacy to get it for cheaper.  All in all a good visit.  I also gave her information on Arthritis Introspective and explained what it is and that we are fundraising for the Gathering next year.  She said she's probably going to donate to it.  I even left her a self-addressed and stamped envelope to make it easier for her!  Hee-hee!  Every little bit helps!

I also went to Walgreen's and my favorite pharmacy tech was there, Kourtney.  She is always so nice and pleasant and she always greets me by name.  Wow, a pharmacy with great customer service!  That's hard to come by these days...  She always checks to make sure my meds are covered by my insurance, and if they're not, she gives me a call.  Great young lady!

I also stopped at a local coffee shop for a cup of iced coffee.  It's a cool little coffee shop.  I'm thinking of having our first AI meeting there.  They let me leave flyers for AI on there book shelf for papers and things!

Today has been great so far.  Feeling happy for a change is a great feeling!  Now for a nap since I got no sleep last night!  The dogs are already in bed ready to sleep.  Smudge is zonked out on the dresser.  Now it's time for me to shut my eyes...

I hope everyone can have at least one good day like I've had today.  Just take it as a surprise present!  I think I even have a bit of a skip in my step.  At least I didn't fall today!!

Enjoy the weekend even though it's hot out there!

One step at a time

My crew of furry kids!

Well, it's the weekend once again.  I had an early wake up via my dogs and kitty at 5:30 am.  I dragged myself out of bed slowly this morning.  I took one step and wham, knee pain.  As I limped to the back door to let the rascals outside, I was thinking, will I ever have a day that I wake up and not feel pain?  It doesn't seem likely.  I was very optimistic about Actemra giving me my old life back.  It has helped some.  I do have more good days than bad days right now...  Living with Rheumatoid Arthritis is so unpredictable.

About 2 weeks ago, my rheumatologist added MTX and prednisone to my treatment plan.  Two days after I started this, I had so much energy, and hardly any pain.  I started early in the morning cutting the back yard and front yard.  Trimming and edging also.  Cleaning around the house. Power washing outside. Cooking dinner and more.  I felt pretty darn good!  I was so happy to be able to do things again, even if it was house work and lawn care!  Unfortunately it didn't last.  I am now having pain again and lots of fatigue.  The fatigue is awful.  It feels like a combination of the tiredness you feel when you get the flu and/or running a marathon...

As I step forward, the work with my support group is moving along.  We've had a few new members sign up.  I had a great visit with Kevin when he came through Houston.  We chatted and talked about goals for AI and the Gathering next year here in Houston.  He really is a good guy.  It's so nice to meet people that make you feel comfortable and you feel you can trust.  A true friend.  I also got to meet up with Vince who lives on the southwest part of Houston.  He is one of the organizers for the Gathering.  We had coffee, talked, and visited the possible hotel for the Gathering to be held.  It is a very nice hotel!  The area is great with lots of restaurants, shops, bars, all within walking distance.  We have to have a bar close by!!  Vince is another person that is really great.  I am happy that I am meeting people that are a positive influence and who inspire me to do better, and be a better person.  We should all be more choosey of our friends.  They reflect on us, and they can either bring you up or bring you down.

All in all things are going well.  I was hoping to be feeling better physically than I am right now, but I do feel better mentally so it's a bit of a trade off...  I've made some changes for the better and I feel great about them!  I'm looking forward to two fundraising ideas.  Actually make that three ideas!  Now to get them all to come to fruition...  There is going to be a lot of work involved, but I'm psyched about it!

I'm taking steps and learning who is important in my life.  I hope to show them that I appreciate each of them as individuals and for their unique personalities.  Friends get us through the rough times, share the fun times, laugh together, and sometimes cry together.  We discuss ideas, life, personal problems, issues, jokes, and enjoy each others company and conversation.  The negativity is gone from my life.  Trust is an important part of friendship.  I'm even reaching out to my family without having turmoil.  So things are looking good in that aspect!  I miss certain people.  Chelsea!  (hint-hint)  I'm going to have to get my ass to Austin to see you.  It's just the long drive that gets me.  Just driving around Houston on Wednesday wore me out.  Maybe I can get hopped up on prednisone for the drive!!  LOL!

Well, today may be a day that I don't do much.  It's going to be another hot one here in muggy Houston.   I slept for a bit last night, but I feel like I didn't sleep at all...  I hate it.  I did manage to water all the plants this morning, as they were drooping.  I'm hoping to get some more tomatoes out of the plants we have left!  We still have basil, mint, and rosemary growing pretty well.  Also the Hibiscus are doing great.  Blooming all the time!  Next year will be even better.  I'm going to read about gardening over the winter and go all out next Spring.  For now, I'm ready for Summer to be over.  I'm ready for the cool breezes of Fall.  Enjoying coffee on the patio with the windchimes swaying and singing in the air...

As for now, I feel pretty good.  Certain parts of my body may be in pain, but my mind is much clearer and happier!

One last thing.  I really hope I get to take a trip up north this Fall!  I'm looking forward to doing something important to me, and to visit a couple of really great friends!!  (Whether they like it or not!)  So I'm keeping my fingers crossed!  I'd love to visit NYC with Joan and Marianne and enjoy the city.  Possibly go on a photog hike with Joan.  Maybe even the Jersey shore to walk barefoot in the sand...

Each day, I take one step at a time and see where it leads me.  Always looking for the positive direction and hoping for the best!

Michelle