Monday, November 15, 2010

What to do....

It's Monday. It's a very difficult Monday. I didn't really think I had over done it over the weekend but apparently I did. I tried my best to rest, sat when I could. Fell asleep before 10:30 and yesterday I spent the afternoon in bed.

And yet when I woke up this morning I wanted nothing more than to stay in bed. The problem. No sick time. I have used it all up and I am reluctant to use my vacation time for days off. But as I sit here at my desk I feel like I am going to loose it. I am going crazy. I would give my right arm to lay down, cry my eyes out, scream in pain. This really sucks. Tylenol is doing nothing and I can't take anything stronger at work... what a huge frustration.

I love my job, I love working and right now I can't afford not to work. Life is so frustrating and such a challenge. How do I manage to sit here for 8+ hours a day? I really need a vacation. Can I make it through this week... I don't know. I know today I will go home and spend the entire evening in bed, leaving my wonderful husband to cook and take care of my 9 year old.... but I really don't have a choice. I need something.. maybe a million dollars so I can take a few years off. :-). So today I will continue to sit at my desk, fight back the tears and pray that 4:00 comes much quicker than normal.

Wednesday, November 10, 2010

One of the Most Frustrating things about having Lupus

Let me just start this post by saying my Rhuemy & PCP are AMAZING. This post stems from issues with specialist.
The first most frusting things is when I am dismissed. In August I was really, really sick. I spent days in bed, a trip to the ER and trip after trip to the doctor for tests and IV fluids. Both my normal doctors were on vacation but I saw a new family doctor who didn't dismiss me, I was amazed. I know my body better than the average person. I know when I have a fever and I know when it's not Lupus. After a few weeks I went to a GI who did more tests and I learned that everything was "fine". So there it was "It's Lupus".

It is really frustrating. Now I am dealing with new symptoms. I am dizzy all the time, my core temptature has dropped to 94.5* and these headaches are INSANE. But it's Lupus.

The dizzyiness makes me so sick. walking down the hall is intersting, I sometimes wonder if people think I'm drunk. But of course it is blown off, I have Lupus therefore they can't help me, unless I want to take steriods and steriods don't work.

The core tempature thing is really interesting. I didn't know that it WAS lupus related. I had never heard of this side effect, but it really sucks. Frist of all I'm cold all the time! When I get home from work I usually take a burning shower just to warm my bones & joints up. then I crawl into bed under 5 or 6 blankets and a heating pad just to warm up. This is also an issue when I go to the doctors & they ask if I have had a fever. I know when I have a fever, if I'm "normal" they think nothing of it. to me 98.6* means I am clamy and sick. So if I am asked if I have had a fever I say "yes, but I don't know what it is because I don't take it, I just know when I have a fever". So now to find a cure for being cold, because nothing is more miserable than spending my day shivering or in so much pain from my cold, cold bones.

So I guess I just need to learn that most things are "just Lupus". But what if something isn't "Just Lupus"? what do I do then?