Realizations

I had a good appointment with Dr. S this morning. My SED levels have dropped, which is good.  They are still elevated, but not like before.  It would seem that our course of action seems to be working.  The swelling around my joints has also visibly decreased. All of this is good.

None of this means I can say 'It is done!'  If anything I have to maintain my vigilance over my choices.  I may never get my levels of energy back that I had.  I'm not going to pine away wishing for lost glory. Instead, I'm going to look forward to what I can do.

We discussed my change of diet.  Dr. S thought I had made a wise decision. He seems to like the fact that I don't go half cocked on anything. I research, gather all my information then make my decisions.

I have to admit that I have been feeling better since I started the vegetarian based diet.  I'm being careful to make sure that I am eating a balanced diet.  I'm not going vegan.  I'm keeping my dairy, egg and fish options open.

I'm proceeding with caution as I manage these new waters. Spring and Summer will be the time to be vigilante for me. I've not done well in the sunshine.  I never have.

This time I can approach this summer prepared.  My life has changed, but my dreams and goals haven't.

Lupus & Work

My new reality is really my old reality.  No much has changed in my grand scheme of things.  My day to day living experience is still up and down, good and bad, etc.

It's Life.

What has changed is my understanding of the 'why' of my physical condition.  There is a certain satisfaction knowing that I'm not losing my mind.  For a while there it was a close thing.  It's a relief to know there is a reason for all the aches and pains.  That, through patience, I'll be able to manage this.

How I deal with work, now that's a challenge.  Generally, I can make everything work.  But I have a small problem.  I'm a type A personality with a definite overachieving issue.  I want to get the job done.  I like to work.

My acknowledgement of Lupus is forcing me to re-evaluate how I do things at work.  How many responsibilities I take on and when I ask for help.  I'm not very good at asking for help.  The LFA website has a great article about making my workplace more manageable.  I'm slowing getting the changes I need implemented. Re-jiggering my workspace to be more ergonomic, working with facilities to help me out with the glare.

All this is something that I can ask for according to the ADA.  I'm not planning on stopping work anytime soon, so I have to find a way to make my work environment as friendly to my current situation as possible.

Yes, I have Lupus and I'm learning to ask for help.

'Tis the season .... For the Plague!

Sneezing, coughing, sniffing can be heard across the floor at work.  In elevators, I waiting for that stranger to sneeze without covering their mouth, exposing everyone to their icky germs.  Seriously, what DID their parents teach them as a child.

I've never been a particular germaphobe, but I do know that I have been more susceptible over the last several years to the bug du jour.

As a kid, even a young adult I had a really strong immune system.  I could pretty much survive anything. I only recall getting the real flu once in college. Trust me projectile vomiting in the middle of the sidewalk because I wasn't going to let no stinkin' bug keep me from my mid-terms was a memorable moment in my life.

Now when someone sneezes in my direction, I throw hand sanitizer at them, followed by tissues and a threat of violence if they come any closer (I feel that any jury would find in my favor if it got that far). I'm considering wearing a mask for the next 6 months out in public.  People would avoid me then! :)

That brings me to today.  The annual Flu Shot extravaganza.  I didn't use to get them.  Frankly, the years I got them I seemed to get the flu more often.  Now?  I get them every year.  I usually have a little reaction to them but the end result outweighs the initial inconvenience.

The Lupus Foundation of America recommends the Flu vaccination as well as the Pneumonia vaccination due to the suppressed immune system issues of the Lupus patient.  The key is that the vaccination can not have 'live virus'.  The nasal spray vaccination has this.  So a shot is necessary.

So many people come to work sick.  I'm much more aware of the impact of one cough, sneeze or runny nose.  I can't be responsible for bringing the plague to work. Frankly, I expect the same responsible behavior from the people I work with.

Burying my Head in the Sand

Telling people outside my family about my Lupus has been a lot easier than figuring out how to tell the siblings about it.  I know that my friends will support me 100%.  I can trust them to be their for me through thick and thin.

They've never looked at me and said, "I just don't understand why you don't take better care of yourself."  Like Lupus gives you a choice.  You can be doing everything right.  Eating right, exercising, but this is a disease where the immune system futzes out and rebels.  In the computer world, we'd say a gremlin was in the hardware.

I love my family. I've discussed this with my mother.  She's processing this.  My father passed away from an unrelated terminal illness.  This is not something she wants to deal with.  I can't blame her. But part of me does.  She's my mother and I want her to listen.  So, if she's not listening, I'm pretty sure that the sibs won't react well either.

I'll tell them eventually, but the approach will be tough.  There is no easy way to do it.  I'm laying to the ground work.  Putting Lupus support information on the blogs I write that I know they read, on my Facebook page.

I know that in their own way they love me and don't want anything to be wrong with me.  I've seen them drowning in the depths of their denial.  Frankly, I'm not sure that I have the energy to deal with their fear.

Yes, I'm being passive aggressive about this.  I haven't fully processed this myself.

I'm going to go back to being an ostrich.

Information Overload

Having a label to all the oddball symptoms I've been having helps.  Having a mother who has now made it her project to find out all the ins and out of Lupus and all the medical ramifications of all the treatments, is going to send me over the edge.

Seriously.

I know that she loves me and wants me to be 'fixed' and healthy.  That is the role of a mother.  But 'fixing me' is something she can't do.

This is where I seriously have a hate/hate relationship with the internet.