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....

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".

My new favorite item

My new favorite gadget. I have to say I LOVE, LOVE, LOVE this. I hate having to ask my husband to open my pill bottles and with my kids in the house I don't feel right about getting regular caps.
This tool is a wonderful gadget. The magnifying glass may come in handy some day but for now it just opens my bottlesClick here to learn more

immunosuppressant

I have a love hate relationship with my immunosuppressants. I LOVE what they do to me.. I feel so much better when I'm on them. My Lupus rarely rears it's ugly head and I have enrgy and no pain. I just feel fabulous.


My hate is because if you get sick you have to go off of them until you are better. So right now I take one shot a week. On Monday night I knew I should have held off a day or two because my brother and his family spent the whole weekend at my house and his wife & both kids had a cold. But I thought, no... I wont get it. Sure, I've kissed, hugged, shared food with my nephews but there is no way I'm getting sick- I feel great! Well today I woke up with a soar throat and nose issues.... NOOOOOOOOO!
so when Monday comes around I will need to make a decision. take the shot or not. last time I had to go off my shot I suffered horribly. So here is to hoping that my body will kick this cold ASAP and not have me make a decision to take it or to not.

Why can't I sleep????

You know what sucks about not being able to sleep? that you can't get up and do anything cause you will wake others up and you are begging your body to just drift off. not being able to sleep is sign one that a flare is coming. Some would think that my body would be CRAVING rest when a flare is on it's way, but no. Mine says "time to get up".

I am a greedy sleeper. I like my sleep and I do not like to loose one minute of it, so you can imagine that I am VERY cranky today. I have a big weekend ahead and i don't have time for a flare.

Hmmmmm.... now that I type that, I realize I say that every time I have a flare.

Happy Thursday!

Joints

JOINTS: (N)
1. junction between bones: a part of the body where bones are connected, e.g. the knee, elbow, or skull.
2. junction between segments of invertebrate body: any of the points of connection between movable segments of the body in an insect, spider, crab, or other invertebrate
As I see this definition of the word "Joint" it makes me chuckle. Joints to me are more than just where the body connects... they are a source or REAL pain. My last chest xray showed signs of arthritis in my back- wait your back has joints? I am always shocked to learn something is a "joint" because I never really thought of it that way. My ear pain, is actually my jaw- which is a joint! this probably doesn't shock most people but it shocked me... just another thing to blame on Lupus.

Today my index finger is in severe pain. I'm trying not to use it at all but when my job is sitting at a computer that makes it IMPOSSIBLE. I look like a dork trying to type with nine fingers and I'm dealing with a TON of typos.

Cori's definition of Joints:
A source of pain, a place where your body connects and can cause severe pain at times.
I wish I knew what I did to my finger but I'm sure it's just Lupus related as everything else is. Time to continue my week.

I'm back

It's a shock I know. But I think it's time to start keeping track of all that is going on in my Lupus world. I sure have missed having a place to dump it all and recent comments made me realize that people are actually reading this!

The remainder of this year was ok. I had some severe flairs and one that lasted several weeks. I am getting better at managing them, but sometimes the pain is just so unbearable. I also decided to help out with the Seattle Lupus Walk in October and had such a great time I decided to sit on the committee again. It was so awesome to see our ideas and hard work become a huge success.

In November I suffered a BAD flair with massive chest pains. It was to the point that I couldn't move. My Lupus Dr. decided to try a new medication with me, one that isn't treated for Lupus. After being on it for 4 weeks I was amazed at how I felt. We then tried to push the expensive ($2,000 a month) drug through my insurance and with a huge praise they paid it! God is so great!
I have been on it 6 weeks and it still seems to be working GREAT with little side effects. My Dr. thinks that by the time we go to Disneyworld at the end of the month I should be 110% better and wont need any assistance while I'm there (wheelchair) which makes me even MORE excited!!! WOO!

So that was the rest of my year. I hope to keep this blog up from now on.