Sunday, January 30, 2011

Feeling pretty bummed out...

When I was first diagnosed, the doctors told me about all of the Dermatomyositis (DM)/Fibromyalgia (FMS) /Lupus (SLE) symptoms.  I could check nearly every one off except for three: unexplained weight loss, various skin rashes, and swelling of the eyelids.  

I was jokingly a little pissed that I had all these crappy symptoms, but none of the weight loss.  I still don't have any type of a rash, but over the past three days I have had swollen eyelids.  

I spent some time yesterday doing home remedies: splashing with ice cold water, cold compresses and tea bags.  I anxiously waited for the morning to come today to see if they were gone.  Maybe I had just had too much salt or caffeine?  Nope.  It's Sunday afternoon and they're still there.  I am so disappointed.

I'll call Dr. Grandits first thing tomorrow morning, but I am pretty sure what will happen next.  I'll have to go in for blood work, then I'll get put on steroids.  It was my goal throughout my treatment to not ever have to take steroids.  They have a long list of  unpleasant side effects that I don't want anything to do with.  On the other hand, they can help control pain.

The eyelid thing is also a huge SLE/FMS factor.  That makes me afraid that those symptoms could be flaring up.  That would put a damper on the good streak that I have been on.  I had a good weekend.  I felt pretty good Friday and Saturday, which usually are pretty tough days for me - see "Update" from 1/27 for an extremely scientific and informative graph.

Enter "Emotional Roller Coaster Maren." This is the part that i think I dislike the most.  I'm totally fine, upbeat and positive until something breaks it.  I'm so damn fragile right now, I hate it.  I've moved up a notch to "Daily Crier."  At least my close friends and family are used to it by now.  In a 5 minute phone conversation if I burst into tears at some point, no one bats an eye.  That helps, really.  I think that it's the stress just needing to get out.

Hopefully by tomorrow, or even by mid-week I will have better news to report.  Of course, I always know how many things that I have to be thankful for.  I feel guilty when I get so down when I have so much to be grateful for.  This is something that my counselor has been helping me with; allowing myself to appreciate how I feel, and not compare it to anyone else's struggle.  It's really hard for me.  No matter how sick I am, there are little kids who are worse and it kills me.  Apparently this is really unhealthy, so I'm working on it... don't worry.

So, writing this actually helped a little (oh no - I'm becoming a blogger).  Hopefully it wasn't a huge downer to read.  I guess I just want anyone out there who is going through the same thing to not feel like they're the only one.  The only reason I can think of for why there are readers out their in Belgium, Croatia, Canada and other countries is that they might have been looking for someone to relate to.  It's something that has been really comforting, for me.

Well, off to the couch with my pups!  Here's to a fantastic week; and more to learn about life with these diseases.  


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