Small Victories

I woke up for the first time in weeks without joint pain and stiffness (okay, maybe just a little, but much improved)!

I went to do my blood work and there was no line!

I went to the hospital mail room to mail out my perscription drug claims and caught the mail man before he left with the outgoing mail for the day!

I got out of the parking structure within the grace period and didn't have to pay!

Today is shaping up to be a good day!  What I've learned is that I have to make the most of these good days because I never know how I'm going to feel tomorrow...

- a little lupie -

My View Series #1

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now.  It had some good articles to help lupies deal with their symptoms and learn to live with lupus.  They have a section called "My View" where they have readers respond to a question.  In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?"  I really liked some of the responses, so I'll share some of them in a series of posts.

 

*****

It's going to be a fight, but you will find a strength inside you that you never thought you could have. When doors to life and normalcy shut, fight like hell to find a window. If you keep fighting back, lupus will never be able to take over your life.—Charlene

- a little lupie -

Tis the Season...

...for lupus flares :(

I think I've mentioned before, but the holidays seem to be the time for my lupus to flare.  It may have to do with the weather and the additional flurry of activities.  I don't feel particularly stressed, but I do have a lot more going on, both at work and at home.

This year, I am also dealing with being off of some of my medications.  I'm no longer taking prednisone, azathioprine, and procrit.  Some of the symptoms I've noticed are joint pain, fatigue, and mouth sores.  For the past week, my eyes have felt strained and I've been getting bad headaches...but I'm not sure if that is due to the lupus or not.

I had another outdoor service project that I had to go to for work on Friday.  I was dreading it all month.  The service project is "mandatory" and while I probably could get a medical exemption, I haven't decided how "public"  I want to be with my condition.  I don't want people to define me by my condition and I don't want people to feel sorry for me.  At the same time, I do want people to understand why I may not be full of energy and excited to do these types of activities.  So, I went to the service project on Friday but tried to lay low and stay in the shade.  There were a few others doing the same, and I've learned not to judge people as being "lazy" or "unmotivated," because I never know what their story is.  Sometimes I do wonder if others are dealing with the same thing as I am.

I did get a few mosquito bites that are large and painful.  As I've mentioned in a previous post, I'm wondering if my extreme reaction to mosquito bites is related to lupus.  I think I'll ask Rheumy about this at my next appointment.

I don't get the typical malar rash from the sun that other lupies get, but I am wondering if I have some kind of photosensitivity.  The sun seems to zap my energy and can make the malaise kick-in.  When I got home from the service project, I took a shower and knocked out at about 4:30 pm.  I slept all the way until 8:30 am the next morning and still felt tired.  I forced myself out of bed to eat and move around but was dealing with a headache that only got worse with bright lights.  I decided to head in early again that evening and finally feel back to normal today.

I've kind of been in denial about this flare because I was doing so well.  I was just about to hit my 6-month remission milestone, and I'd hate to have to restart my clock again.  I feel like it is passing, so I'll see what Rheumy says when I meet with him in a couple weeks.

- a little lupie -