Nobody Gets It

Today just sucked.

Sores on my tongue were driving me crazy.  Pain level was a 9 a good part of the day.  I got a hive in a new spot....on my left hand.  And I was busy all day....so no nap.  (ugh)

My husband got floor seats to the Mavs game, and I told him I didn't want to go.  He made me feel guilty about it.  He STILL is bugging me about having to turn down these tickets.  He doesn't get how terrible I feel today.

In a couple of weeks, I am going to San Antonio with my daughter's choir as a chaperone.  It will be a lot of fun....but a lot of walking.  I REALLY am uneasy about going.  I have been putting off writing the 360.00 check and I finally told her today that I wasn't sure I could go....BAD IDEA.  She is correct in telling me that I *did* already commit to going---months ago.  She was really upset and reminded me that it HAS been stormy a lot the past few days and I've told her that bad weather affects my pain. The weather won't be like this in San Antonio and furthermore, all the room assignments have been made.  (hehe)

But seriously, I couldn't tell her no.  I have to go. 

Nobody gets it.  Nobody knows how completely awful I feel.  I'm really starting to fall into that wanting-to-just-disappear depression. 

I need to find a doctor who can help me.   Soon.

What Makes Me Sad....

I went to IKEA today.  I love that place.  So much to look at and amazing ideas.  I could shop there all day.

But I CAN'T!

Why?  Because some no-name, nobody can figure it out, illness makes me feel like dirt after shopping for about 30 minutes.  My legs start to ache and I start to feel feverish.  It's horrible, but it always happens when I try to do anything that requires walking...including grocery shopping.   That really makes me sad.  I can't have a normal life if this is how I feel when I go out and do something.

I'm home now.  I'm exhausted and have a temp of 99.5.  I need to find a rheumatologist, even though I know they will be stumped too.

Another symptom I'm having a lot (with the chest pain and fast heart rate) is dry mouth.  Fun, eh?

Hope you all have a wonderful Easter weekend.  

Here We Go Again

I am going to call one last (I hope) rheumatologist tomorrow.  I had to stop seeing the one I've been going to because he is not on insurance and since he still hasn't diagnosed me, it's just too dang expensive.  I told him and he totally understood.  It sucks having to start over, but we have to do it.

Meanwhile, I feel like I'm dying.  I'm not kidding.  I'm sicker than I've ever been.  I'm in so much pain.  My joints in my knees, fingers, and toes hurt all the time lately.  After a nice little 2-3 month break from it, I'm once again getting the hive-like intensely itchy rash attack about every other day.  My chest is now hurting a lot of the time, as well.   Along with the pain in my chest, my resting heart rate is up around 95 a lot of the time.  I'm just not feeling well at all.  Quite frankly, I'm scared.

So I will try to find a new doctor tomorrow......me and my stupid mystery illness that shows up in none of my bloodwork.  I need Dr. House!  (don't I wish!)

Seriously, though, my gut tells me it's lupus.  My last doctor was going to test me again for it, but he never got around to it.  I don't know what to think or do anymore.  All I DO know is that I am getting sicker.  I need help and I pray that I can find a doctor who can figure this out.

I've been reading blogs every night, but just haven't felt like writing (or even commenting).  I decided that I probably need to write 1~for therapeutic reasons...it always feels good to vent this way!  and 2~to keep a journal/record of my symptoms...my memory sucks these days.

Hope you all are doing better than I am.