Monday, April 26, 2010

Change, Change, Change

I hate change. I don't handle change well, especially when it comes to my health. I have had a headache for 6 weeks. So I had the regular battle of do I see my PCP or my Rhuemy. I opted for my PCP because I hadn't seen him in a while. After a week of trying a couple of meds I went back and he decided it was time to try Prednisone. Woo! I hate that drug, it doesn't work. But I agreed.

So today I saw my Rhuemy for a routine check up and talked about the headaches and it is possible that the medication I take for my chest pain is causing the headache. So now I have to decide if I deal with the headaches or the chest pain. This is so disappointing. they both are annoying in there own way.

So I will go off it for one week and see what happens. If the headaches stay I have to have more tests done. If the headaches go I have a terrible decision to make.

Monday, April 12, 2010

moving day is coming

Oh boy. We move from an apartment to a 5 bedroom house in just 5 days. Aside from the actual moving part I'm doing ok. But this weekend made me realize that I really can't do anything.

I tried to help my parents move their stuff downstairs and I couldn't do it. what am I thinking?

I am really glad our friends have jumped in but I just don't know if I can stand on teh side and do nothing. This weekend is going to be crazy.

just thought I would share.

Friday, April 9, 2010


In the last few months my pain has been managable, but today it's gone through the roof. I have taken everything I can take while at work and nothing is taking the edge off.

I hate it when pain takes over every thought. I just want to forget about it and have it go away.

Wednesday, April 7, 2010

What's it like?

Sometimes i dread this question and sometimes I yearn for the right person to ask it. I want those that care to ask. Friends that have been there for years and years and still don't understand. But I also don't want to tell someone that is just asking to kill time or show sympathy.

I have accepted the pain, the drugs, the doctors and all the unknowns. This week has turned into an interesting one. I went to my PCP on Monday about a 3 week long headache. To me going to the doctor was a waste of time since I knew the answer would end up being "just Lupus" but with all the people nagging me I figured I would kill two birds with one stone and ask about a side pain that was getting worse. And of course, my addiction to social media sites meant that I would share where I was. But I wasn't ready for what people told me.

"I'm sorry" that's what they said. I want to scream. Did you give me Lupus? then don't say you are sorry, cause you have no reason to be. It drives me crazy and really I know these people are just trying to give me some encouragement and show they care. But the words "I'm sorry" don't show me that. I don't want people to apologize for me having Lupus. After 10 years of dealing with it I have accepted it as my path in life and I am going to do everything I can to make sure I follow it as best I can and share my pain and resources with the many others that have it.

My other issue is friends that have been around me for years and still expect me to pitch in or go out. I can't always do the things I want to. Maybe I have been "faking" it too much. Maybe they can't see that holding a handful of playing cards is crazy painful. Maybe they don't see that when we go out on a friday night I spend Saturday napping off and on. Maybe they don't see that the weekend getaway would take me another 2 days to survive.

And i know that some of their ignorance is my fault. I don't want to talk about it publicly, I don't want to draw attention to myself when I am feeling the worst, and I don't want you to make me feel bad for having to say no.

As I am writing this I just realized that this month marks the 10 year mark to my diagnosis. Wow 10 years. Part of me wants to weep and the other just block it from my mind. It's hard, really truly hard. But I know my Lupus only effects a fraction of what it does to others and I need to be greatful that it hasn't gotten worse.

tomorrow I go in for a CAT Scan of my liver. We will see what happens in there. I really hope this is just nothing, but I fear it is something....

Monday, April 5, 2010

Once again I have failed to update my blog :-(. I really need to get into a habbit of taking care of this blog. So once again, forgive me.

A LOT has happened since mid January. My family & I went on an 8 day vacation to Orlando. It was AMAZING! But I spent a few weeks after to just trying to get over the travel and all that came with it. I did think it was well worth it.

February came and went & so did March. So hard to believe.

3 weeks ago I started getting headaches and finally went to the Doctor today. So I start some more Rx in hopes of dealing with it... the list of drugs I take is getting longer & longer. Hopefully it will take care of it though so I can go a day with out head pain.

I also asked the doc about a side pain I have been having. He checked it out and immediatly ordered liver function test and an immediate ultrasound. GOOD times!

So the Lupus fight continues. I'm sure I will waste my time on all these tests only to be told "it's just Lupus".