Monday, July 28, 2008

Lupus Walk

The Annual Mad Hatter Lupus Walk is October 18th. I have set up my fundraising page and I am hoping to raise a ton of funds & get a BIG group of friends & family together for this walk.

You can click here to view my page and you can either support me or create your own fundraising page as part of my team.

I want to win largest team & most fund raising, not a bad goal to have. So sign up today, mark it on your calendars & let's have a great day! This is a kid friendly event!!!

Wednesday, July 23, 2008

Her words are powerful to me....

I copied this from But you don't look sick. It's a great site and every day I get a small article. this one hit me hard becuase I touched on this subject in my last post.

The Pain of Disease and the Triumph of Togetherness
* Looking back on 5 years of

There’s a pain that can be worse than any physical disease.

It’s the loneliness you feel when you see your friends go out and do things without a second thought and how that is an impossible dream for you. How the simple act of attending class or going out to supper becomes a mountain you just cannot scale, because of the varying weights that disease dangles along with it. It is so difficult when you are all alone and those you love are where you want to be and they don’t even understand the magnitude of how much you would love to have that normalcy to be there. I would love to be able to not deal with a single consequence and only reap the rewards of fulfilling that task with them, but I can't always do that.

It’s the pain of being different—and no one understanding the magnitude of that difference and how every aspect of your life is touched with the tentacles of your ailment. You can’t make a simple yes/no decision on the spot because you have to think about its impact on your body and your future and how that impacts those you love. Nothing is easy and everything becomes important.

It’s having to think through the response to the question, “How are you?” Who knew that was such a deep question, but to those of us with chronic illness, we all know the struggle involved to give a truthful, but upbeat answer. You crave for others to understand that you love and appreciate your life, but that does not make a single breath of it easy or mean that you’re “doing fine.”

It’s the guilt that can accompany it all. Am I holding my family back? Am I putting too much work on my husband? Will my children understand how much I love them even when I cannot run or jump, or even just walk with them? Can my parents truly know how grateful I am for their protective care during the years before, during, and post-diagnosis, each day waking up trying to learn to be the best person I could be with this illness (and not always succeeding)? Can my siblings forgive the extra allowances I was given in retrospect? Can I forgive myself for not being able to do it all?

Like many of you, I’ve lived a life like this. I’m 28 years old and have been chronically ill for two thirds of those years now. So it’s not like we don’t have coping mechanisms that help tackle these pains. I have a faith that has been blessed by the inward turmoil that goes along with the pain (physical and emotional) and I have an appreciation for the important things that come with being able to live the simple life. Yes, being able to, not being stuck with it. But that doesn’t mean that there aren’t those moments. Those moments that you just would like someone to understand.

And here enters “ButYouDon’” I’m an innately shy person. Having lived a life of near hermit-dom for many years along the way, I suppose a lot of introspective tendencies have come my way. But when I read the Spoon Theory, like you readers, I was touched in a way that you other spoonies can relate. Someone out there gets it. In fact, not only one person, there’s a community who does. And perhaps I’m more of a lurker than a talker, but even I can appreciate the blessing of seeing (through articles, discussion boards, etc) that we are not alone. And for those of us who need to feel some compassion and understanding every once in awhile to get us through those rough moments, I want to say thank you for this site and the community that cares, that has evolved within its walls. Together we can make it through each day, and make it better than we could have alone.

Written by Carrie Beth Burns © 2008

Friday, July 18, 2008

Mid July update

So much has gone only, physically, but especially emotionally. Let me explain.

Last week was our annual family camping trip. I have had a TON of anxiety regarding this trip because my medication is on a specific schedule and the mornings are already so bad, I was nervous about not being able to walk to the bathroom on my own. At home I have furniture in the right place for me to hold myself up to the bathroom. Mornings are so bad, so you can see where my reservations come in (not to mention late nights and a lot of physical work).

This year we opted to meal share with another family, and only God knew how much that would relieve from me and especially from David when it came to meals & such- don’t get me wrong we did help out but I was incredibly blessed that my friend had an RV so cooking and clean up was MUCH easier.

I kept pretty good track of my medication schedule, the mornings were BRUTAL and I know that two days I had maxed out on my pain medication and desperately needed more. On Wednesday a group of friends decided to do the ropes course, something I have ALWAYS wanted to do. Something I knew in my heart would tax my body so badly that I would pay for it…. I just didn’t realize how much. So in the heat of the day (Note: heat & my lupus are a terrible combination, so I already felt like crap), I put on the gear and I was the second to the last person to scale the 25 foot tree. I was incredibly proud that I made it that far but I was not meant to make it much further. There were some hiccups in the tree that gave us a 30 minute pause and then I moved across the wire, and again another 15-20 minute pause. By the time I climbed around to the other side my body said no more, and since I couldn’t make it back, my legs were jello and my mind was woozy they propelled me out of the tree and called 911. (for more exciting photos and stories stay tuned to my family site.)

So I paid BIG time for that one, I played softball that evening and came back to camp with a migraine. Again, no more pain pills for me so I climbed into bed and slept as best as I could.

The next morning was rough, David helped me walk ½ way to the bathroom, but I got to embraced and didn’t want others to see him needing to help me and I got the strength to go the rest of the way but I collapsed once I got inside. I don’t know why I am so scared to have others see how bad off I really am, maybe because I fear they won’t acknowledge it, or they won’t care.

So the rest of the week was restful and full of bruises and knowing when to ask for help. David is the most AMAZING husband. I just needed to give him a look or whisper in his ear and he was right there discreetly helping me do whatever I needed.

Right now the hardest thing is realizing that those that I thought were dear friends aren’t. Over the last few months I have seen one of two things, first, friends who I thought were true and there for me disappear, and friends who I had never really been close to show that they are true caring friends.

But at family camp a comment was made to me by someone who I thought was a dear friend; it’s possible I am reading into the comment, but it was so hurtful (and no I probably won’t address the situation because I don’t feel like I need to justify my disease). So here is the situation in a nut shell.

I fight HARD to not let my lupus or fibro show, I fight HARD not to let it bring me down. I plan and I plan and sometimes those plans change because my heart desires me to accomplish a task that I probably shouldn’t push myself to do- that’s the dare devil in me .
So when comments are made that it is unfair that I planned rest time or whatever so I can plan to do more than I should hurts and it hurts a lot. I wish for one day I didn’t feel like crap all the time. I wish for once I could go camping with my family and not stress about the fact that I am going to flare big time the next week. I wish people would just understand that when I have to plan rest time and then I change it because something else of greater desire come up that I can do that, I am willing to suffer the consequences.

Don’t send me to bed early because I want to enjoy others company instead of resting- I know In the back of my mind what I will pay for and I don’t need others pushing me away- that is of course unless I am being obnoxious- than go ahead (LOL).
I am so blessed to have those around me that understand. David was wonderful and the Russell’s offered me a warm place to sleep almost every night- I just didn’t want to leave my family alone in the cold and then get caught snoring to loudly .

So today is Friday and my flare is getting progressively worse as the week goes on. I have a feeling this will be an extremely relaxing weekend, I need it. I need to get through this flare as soon as I can.