Wednesday, April 27, 2011

By the way

I am blessed by your comments. They are so encouraging.

I am also available on email too, so feel free to contact me if you ever need to talk.

Thank you all so much! many of you I have not met, but you guys are amazing!


So things aren't horrible. They are actually back to "normal"... sorta.

So the swollen joints are gone, but my hands are still sore and don't like it when I do repetitive motions too much. So I am trying to take it easy. Apparently it can take up to 8 weeks for the infusion to show it's working... Today I am on week 5, so I am still hopeful.

Right now I am dealing with a rash all over my torso. Went to the Urgent Care clinic on Saturday night and was told I was having an allergic reaction to something, but no body knows what. I have racked my brain but we haven't changed a single thing. And apparently it's been too long for it to be a reaction to the infusion.

So he said "Steriods" and I proceeded to argue. I finally said you can prescribe them til you turn blue, but I wont take them. So if I have to deal with this forever I will.

I'm starting to question that decision.

Part of me is willing to try anything. It looks like I have chicken pox and the rash is starting to climb up my face. So what do I do? I just don't know.

And on the other hand, I'm stubborn. Steriods make me fat, grumpy and sleepless. Why would I take them?

So as I sit for 3 more weeks waiting for an answer. Hoping against all hope that the answer will be exactly what I need. Waiting is so tuff, but I will wait. Counting the days.

I hope you all are having a great day and thanks for letting me rant.

Wednesday, April 20, 2011

11 years

11 years ago this month I was dianogsised with Lupus. When I first got diagnosised I thought Lupus would never run my life. I was going to be stronger than it. I was going to beat it.

Well in 11 years I have learned a lot...

I have learned to listen to my body and I have learned that I cannot ignore my Lupus. The last year has been the hardest. I have had to really listen to my body, I have had to stop things I love to do and I have tried all kinds of new medications... the latest one has sent my body into a major flare. I hurt from head to toe. It is getting better, but slowly.

I kept reminding myself that I one of the lucky ones. But I'm starting to think i'm not. Sure my lupus isn't attaking my kidneys, but it is attacking my joints and my lungs it makes me exhausted and gives me headaches... maybe nobody has a good strain of Lupus. It's time for me to open my eyes and start realizing what is going no and start living my life.

Sunday, April 17, 2011

Long week

Well it's been a long week, physically and emotionally.
On Monday I finally called my doctor and was told to come in right away. I hurt. My pain level was at a 8 or 9. She told me thisncould be a good sign of the infusion working. She put me on bed rest and an intense regimen of medications to dull the pain.

First and foremost I hate taking time off work. But I knew I couldn't do my job. So insolent four days resting and it sucked. My hands were so bad I couldn't type. My joints hurt like nobodys business and my muscles hurt from laying down.

I woke up Saturday not sure if I was feeling better or if my mind was ignoring my body so I could do what I had planned. In the end I way over did it.

But on Saturday I saw the movie "Souls Surfer" I wanted to weep uncontrollably. Thisnyoung girl had dreams that could have been cut short but she had the determination to fight and do what her heart yearned for. I was inspired. But also mourned what I have let slide because I didn't have the focus. I need to reevaluate how I lean on God for strength. How I yearn to do what I want to do and not the bare minimum just to get things done. Time for focus and for God to use me in ways that only He can.

I can do all things through God who gives me strentgh.

Sunday, April 10, 2011

Bad days

*disclaimer- I am posting this from my iPad so if there are any weird spellings or typos please forgive me. I will try and proof.

Today I am angry; yesterday I was sad.

Yesterday I was in a LOT of pain... More than I care to admit. But I tried to make then most out of the morning. After running a few errands I was done. My head wanted to explode and my joints were swollen. My skinny little fingers looked like sausages and hurt. But that isnt want made me sad.
My husband and I don't get many date nights. Our youngest is 9 and since we both work full time I hate getting a babysitter so we can go out, well last night he had a sleep over, so for two weeks I have been looking forward to spending the evening with my hubby doing something fun.
After my nap yesterday I hurt. A lot. As we were taking my son to his friends house my hubby suggested we just go home. That hit me hard. Pushing the shopping cart at Target frustrated me, having to sleep for three hours just to escaped the pain made me mourn my sewing room and plans but the idea of missing something I had planned devastated me. I know i should be use to it by now, but I'm not.
We wne to dinner and I fought back tears from the pain, then ice cream and home to watch a movie. The date didn't suck as much as the pain, since that is what I remember.

This morning I woke up with high hopes of feeling better. It's my week to volunteer at the coffee stand and I refused to look for a sub so now I will suffer. Im pissed off. This isn't right. How can I be in so much pain? So swollen? I don't usually swear but today I want to scream "FU lupus!!!" today I am mad. I had things I wanted to finish this weekend.

I just want to know what no pain feels like. I am tired of lupus winning. I am tired.

Friday, April 8, 2011

2nd infusion

I had my 2nd infusion 2 days ago. I have been debating what to post and to be honest I have a lot in my brain right now, so if this seems scattered forgive me.

first the infusion went off rather well. This time it ended at 12:30 and I choose to go home and sleep instead of heading into work. I was very thankful that the family that was keeping my son said he could stay all afternoon if needed. And by the time I got home I could hardly hold my head up from being so dizzy and sick to my stomach (Yeah, I probaby shouldn't have driven). So then I slept. I slept all afternoon woke up for a few hours and then conked out for the night. I think that made a huge difference in how I felt... lesson learned.

This morning I was digging through all the material to find out when I will start seeing improvement and was discouraged to see "8 weeks". Can someone please tell me why the side effects kick in right away but the drug itself may not work for a full 8weeks??? That may need to be another medical break through.

The last two nights have been normal for me. The pain so intense that sleeping without painkillers is impossible. I'm not dealing with the morning stiffness which is really good news, nothing worse than setting your alarm 15-20 minutes early just so you can start moving your muscles before you get out of bed.

So now I wait. It's a very difficult wait. I want so much to see results but I can't just yet.

I need it to work, I fear my newest hobby is going to have to go away and it saddens me. My hands hurt so bad that I can only sew a few hexagons at a time and it is so discouraging.

If this medication doesn't work I pray that there is one out there for me, I am tired of making sacrifices for my Lupus. I am done making those sacrifices.