Friday, January 28, 2011

Losing the battle not the war

Last night I lost this battle with Lupus. This has far been one of my worse flares. Now I know my Lupus is still pretty mild compared to a lot of other people, but this is bad, real bad.

I have gone into every battle (Flare) thinking: Lupus will not define me. I am stronger than my Lupus and I will make it through. Usually that works, but this week it didn't.

None of the meds I took yesterday worked. It was devasting to lay down last night and feel defeated. Wishing that just once the steriods would work, pleading with God to help me through it.

Now outside of my Lupus it has been a tough week anyways, between the enormous fight between David & me and a very dear friend passing away I have been on edge with my emotions (which thanks to fabulous anti-depressants that is very rare).

So last night at about 10:00 pm I lost it. The tears flowed. I haven't cried that hard in several years, but I gave in. Gave in to the intense pain, gave in to the insominia, gave in to the emotional pain. Just gave in to it all. I prayed and prayed and still didn't find the answers I was looking for. I know God is shaping me for a reason. I know God uses my Lupus in so many ways to help others, so I must rely on His strength and not my own and last night I failed.

I slept three hours and that was it. Now I'm up with pain and nasuea debating if I should take more meds. Debating if I should call into work, debating if it's time to put life on hold. But spending the day in bed will make me go completely crazy. I think taking a day for bedrest would be good for my body but bad on my soul. If I spend the day in bed, I will spend it crying allowing my Lupus to take me over. Allowing it to continue to win.

In two hours I will head to work. I will figure it out. I will fight.... at least until 4:00 and then it's home to bed.

I guess I need to learn that I don't always get to win- but it's hard to loose a battle to Lupus but the war is mine.

Thursday, January 27, 2011

Another Doctor's Appointment

As i had mentioned in my earlier blog this week I was having chest pains. I knew it wasn't Pleurisy, although sometimes I wish it was. My Rheumy and I had talked about getting my heart checked out sometime down the road.

Well today I had my monthly appointment with my Rheumy and let me tell you, getting through the last 4 days was the hardest thing I have ever done. My chest hurt so bad at times I was crying in pain (which for me is painful). Pain meds didn't even help.

In talking with her today we discussed a more urgent need for me to see a cardiologist.... oh great a new doctor :-).

we also talked about steriods (for those that know- I am resistant and refuse to take them). After telling her no we had to talk about other ideas.

I feel really good about our chat. I ended up with IV drugs, which I am ashamed to say I can't remember what she gave me, and then three more prescriptions to fill.

I hate leaving the doctor and thinking what did we just talk about or what are all these papers and prescriptions in my purse. I am just a good little patient and follow all my drug rules without asking- is that normal? I don't care what I am taking as long as it works.
So off to the pharmacy. I have high hopes that this will work although I'm told it may takes week to kick in. The IV took the edge from the chest pains, but it's still there. It didn't help with my joints being swollen, but hopefully that will go soon.

Monday, January 24, 2011

My wish

The hardest thing in the entire world for me is to have people closest to me not understand what is wrong. Today I sit at my desk in silence. The last two days have been full of silence. My chest radiates pain, for more than one reason.

You see my husband, (who is the most AMAZING man in the world, so remember that while you read the rest. he is my rock on this earth, my support system and the love of my life), said something to me on Saturday in a heated argument that hit me hard. It's been a long time since he used my exhaustion against me in a fight. That kills me. I know I need to forgive him, but his words just keep repeating themself in my head.

I know I'm always tired... I know I don't get things done. I know. But what others don't know is what I go through every day watching life go by and me not being able to do anything. Do I want to go home and crash, no. Do I want to have a messy kitchen? no. Do I want all this... NO. I want to feel great, I want get up in the morning go to work come home and be a mom and a wife.

I hate my "internal dialouge" sometimes.

I wish with everything in me I could should him what it's like. I wish I could show a handful of people, but it's not possible. I wish they knew how crappy I wake up feeling, I wish they knew what it feels like to watch others work on things I should be doing around me. I wish they knew. (But I don't think following him around smacking him with a baseball bat for a day is legal- LOL)

I wish they knew what it felt like to have your joints feel like they way 500 pounds and I need to walk up that hill or down a flight of stairs. I wish they knew what it felt like to leave work at 4 and worried that I wont be able to hold my head up long enough to drive home.

I wish they knew how hard it is to say no, when my heart says yes. I wish they knew. I wish they knew. I've shared the "Spoon Theroy" a million times. I know a few have read it, but I don't know if they get it.

I struggle with what to share with him or with anyone. Sometimes I feel like if I say it outloud it will come true and i just don't know how to talk about them.

I wish they knew what it was like. I wish they could walk a mile in my shoes... I wish I could walk a mile in theirs.

My hubby and I will get through this, but it doesn't make it easy. Will I share with him what hurt so badly... probably not because in the next few days we will probably just go back to life like it never happened. So today I sit at my desk... saddened. Debating if I should share this with him. tempting, but I just don't know. I don't like the idea of my friends reading this blog... stupid I know.

Wednesday, January 12, 2011

Ups & Downs

It's funny... today I realized that I only posts about the "downs" of Lupus. There aren't a lot of "ups" but today is an up day. I'm actually doing ok. It's wierd to think but my day is almost over and I'm feeling ok. Not too tired, not in a lot of pain. It's wierd to have the good days. They are few and far between, but today I am feeling blessed to enjoy this day.

Just wanted to share with each of you that the good days really do happen.

Monday, January 10, 2011

feeling overwhelmed

Today I'm feeling overwhelmed. It's that time of the month when all my meds get refilled. Calling them in just reminds me that I'm sick. It's a sinking feeling. One I wish I didn't deal with.

In addition to the RX meds a friend was telling me about all the suppelements her daughter was on too and how much they have helped... which then reminds me that I have become horrible at taking all my supplements. Do non sick people really know what it feels like to have medication bottles lined up on your night stand, in your purse and a back up set you can toss in any bag at any time?

I'm not trying to complain, I'm just overwhelmed. Just wondering if anyone else feels as overwhelmed as I do. Wondering if others look at their supplements and think they are optional and swallowing one more pill each night is hard.

Please don't think I'm complaining... I can afford my meds, I can take them, I can deal with the side effects ( most of the time), I just feel alone in my world where my friends don't get it. Alone in my pain and alone in my thoughts.

Trying to rest in God's arms reminding myself I'm not alone is not always easy.

Friday, January 7, 2011

Social Media

I am addicted to social media, and when I say addicted I mean I can't go 10 minutes without checking Facebook & Twitter. I am addicted to both of these for different reasons.

First, Facebook. I love connecting with current friends and old ones. It has been so much fun to see what is going on in people's lives every day.

Second, Twitter. I have become a LOT more addicted to twitter than anything else. First I started my twitter account so I could vent about my Lupus on a regular basis. I wanted a place where I could really put out there what was going on and still keep it from my friends... I didn't want people to feel sorry for me.
Then my favorite boy band from the early days joined twitter & I immediately fell in love with all that was going on. I could keep up with my two favorite guys (Outside my family) in the whole world. And I have loved every minute of it. (Have I mentioned that they have both tweeted me? someday I'll meet them). :-)

Then I started to connect with my favorite NFL players on twitter... so much so that when I met Matt Hasselbeck I mentioned twitter and when I told him my name he actually mentioned one of my tweets earlier in the day... I about died... he read my tweets. (I'm a dork I know). Then I had an NFL player at my THanksgiving table because I offered to make him whatever he wanted to eat... all because of twitter. I love seeing the real side of these people.

And finally I have continued to connect with other people who I may never know. A few I have listened to their Lupus issues and encouraged through many issues.

Today another person sent me a tweet saying they too were diagnosised with Lupus... It is always a hard tweet or message to read, but I know that they too will get through this. People I have never met reaching out to me because of their diagnosis. How can I help them? I don't know. Right now I can just be there. Social Media has become an outlet for so many and I feel truly blessed to be able to share my life with so many strangers.

Raheem Brock's article

Sorry to people that read this blog on a regular basis. I need to post this article to others can see it... feel free to read it.

Page 1

Start page 2 (You read the first column... go to page 3 to finish that column then back here to finish the article... confusing I know

End of first column:

Wednesday, January 5, 2011


I use the word "tired" a LOT. So much that I hate using it, I hate feeling it and I hate having to take a break because of it. It really makes my heart sink when I hear those words come out of my mouth.

Within an hour of waking up I'm "tired". After taking a nap I'm "tired". Most of the time I'm tired of being tired, so how do I over come this?

Lately I have been going into debt in the energy catagory. I know that is probably common for everyone during the holidays but this year just seems worse. What makes it so difficult is that I don't know how to communicate to even the closest people to me that I need a break.. or that my body is done. I feel like I have hit a break wall.

Today is Wednesday and I keep reminding myself that the weekend is so close, but them I remember the plans we have made this weekend. But I don't want to cancel them... one is a playoff game for the Seahawks... this will take a weeks worth of energy but is worth every second of it. So then I fast forward and think if I can just make it through to the following weekend.

Will I ever be able to catch up on my debt to energy? I don't know. But I am sure I will fight every day to try.