Thursday, February 07, 2008

Reflections

A year ago, I started noticing that my skin would burn faster than everyone elses. Since I've been a diagnosed SLE patient for eight or nine years, the sensitivity didn't really surprise me. But, I could've never anticipated just how life altering that seemingly small issue would become. When you are diagnosed with something like SLE, you tend to think about all of the organs it could attack and the pain that it causes. Of particular concern to us were my kidneys and heart. I think, for a while, we got quite myopic. Without really knowing exactly when or how it started, we started noticing the burnt skin and crappy immune system. Because those weren't things we really planned for, we did what most people do when you run into a problem of that scope and nature: we put coping mechanisms in place. I stopped going outside or in public. And, when even that wasn't doing the job - I started living out of one room in the house. We put up plywood and dark curtains. I stopped participating in things outside of this home and, eventually, outside of this room.

Then you all came along and did what we didn't have the time or courage to do - try to find a new tool for the coping arsenal.

I didn't realize just how deeply entrenched in my disease I was until today, when Steve finished the front of the house and moved to my bat cave. Since he was working in here, with all the blinds open, I had to go in the living room. It was awkward. I haven't spent more than five daylight minutes in there for months. Today, I was out there for hours. It was physically liberating and glorious...but, emotionally, very strange. Logic told me that I was safe, but I was anxious. When you spend a year avoiding something, it's very hard to shake those habits and fears to let your guard down and enjoy. But, I was out there. And, it was amazing.

When Steve finished the bedroom, I walked in and got teary-eyed. For the first time in a year, I could see my backyard from my room. The blinds were open. The heavy curtains were down. And, I wasn't burning. I feel like it's not my room. LOL Everytime I walk in from another room, I do this strange double take. Strange is good.

It's you (yeah, you!) I have to thank for this. You, my readers and friends. You've done more than just donate some cash: You've given me a part of my life back that I thought was gone. You've given me my house back. And, most importantly, you've given my children a hands-on mom again. :) I played DDR for an hour. LOL I noticed that, without the UV burning, I had more energy. It was so much fun. THANK YOU. We may be cat-like in our independence, but this effort proves that atheists can, and DO, join forces for the good of their fellow man. And, to the theists who I know donated - thank you for seeing past our ecuminical differences and helping your fellow man. *GIANT HUGS TO ALL*

28 comments:

Sean the Blogonaut F.C.D. said...

Damn it woman, you got me all teared up at work.

No...not... gonna cry.

Hugo said...

Enjoy, you deserve it!

Berlzebub said...

I'm glad we could help, P-Momma. I'll also being putting together all of the suggestions from those who donated and emailing them to you, this weekend.

I'm ecstatic at how this all worked out. Although we didn't know it at the time, we raised 7.5 times more than we actually needed to get the film installed. I'm sure the cost would have been much higher if [deep announcer voice] MMMan [/deep announcer voice] hadn't been so generous. Even then, unless the installers were union, I think we would still have raised enough to get it done.

Now, you get used to being comfortable in your own home, again, and spend time with the little possums. I'll be sending you the check for the remainder as soon as it gets transferred (sometime in the next five days). Then, you can think about what you want/need to spend it on.

And until I actually get to meet you, *GREAT BIG HUGS*.

Don't forget, if you're ever in the area, we'll MST3000 the Creation Museum. If it closes before then, there's always the actual Cincinnati Museum, the Cincy Zoo, or King's Island.

jen r said...

Oh, you've got me all teary-eyed. I'm so happy for you...now off to learn about PowerPoint. *sniff sniff* I'll try not to cry during class....

corn said...

It's so heartening to hear your story. Perhaps there is some non-sanctimonious good left in the world.

I hope this phase passes for you. I've got a good friend with SLE going through med school of all things (and she's a single mom to boot!). She's had photosensitivity, kidney failure (when 4 months pregnant), pleuritis, etc. The positive thing is that while they were debilitating at the time, they weren't permanent (except the chronic fatigue).

Enjoy your house and take care of yourself. My friend swears by diet, exercise, and lots of rest and with only one rotation to go before graduation, it seems to have worked for her. Good luck.

Mephitis said...

I'm really chuffed for you and here's hoping your new normal will feel normal soon. :D

reddhedd said...

Aww! This is so cool for you, P-momma. I'm so happy you get to live a closer-to-normal life now.

redd

Brent Rasmussen said...

Much love, P-Momma!

Kelly said...

Hooray! I'm so glad you're able to get a little bit of normal back in your life, even if it feels strange for now. Good work, Berlzebub!

And now I'm all sniffly and teary.

aimee said...

I'm so happy for you and your family. How great it must be for all of you. Especially you, to get to roam about your house and play with your little ones must be such a sense of freedom : )

Unfortunately I was not able to help out with the effort at the time. I was wondering if you would be able to put up the link to your wishlist on Amazon again? I would still like to be able to do something.

Poodles said...

*Sniff* *Hugs*

Berlzebub said...

@ Aimee:

Here it is.

Tara said...

My hope is that someday you are able to walk outside into the sunshine, eyes blinking rapidly both from the brightness and the happiness.

My hope is that the doctors and scientists eventually find a cure or a better treatment.

Have you looked into the special clothes used by people with conditions such as "Xeroderma pigmentosum"? Sorry if this has been covered before. I'm new around here.

Ginny said...

I am very happy to hear this. No one is more deserving! Congrats on getting your windows treated. I bet the change will really boost your mood and that can only do good things for your health. :)

Maggie Rosethorn said...

You made me cry, Pmomma. I'm so happy for you. It must be wonderful to be out to play with the kids. Hugs!!!

Psychodiva said...

reading your words and seeing what a difference it makes to you- makes it all worth it :)

(((hugs)))

Joe said...

I'm glad to see all went well with the installation and you're happy with the work.

aimee said...

Thanks Berlzebub.

OzAtheist said...

That's great to hear that it's worked so well. Enjoy your new found freedom around the house.

Does this mean we'll see less blogging now you'll be running around the house playing with the children? :-) :-) :-)

and thanks to berlzebub for organizing the donations.

Milo Johnson said...

People today fail to credit the incredible property that sunlight has of lifting human morale and elevating the body's ability to defend and repair itself. Bask away, Pmom!

Sara said...

Congratulations! It may take a little time to adjust, but you'll do just fine. In fact, given the way humans are programmed, you may find that living in the light again does wonders for your mood.

And as for "ecumenical differences," my theology, at least, is to help a person in need - irrespective of color, creed, beliefs, age, gender, attitude, and so forth. Some theologies preach that it doesn't matter what, or whether the person believes - it matters that they need help, and we can help. And unlike Christians, we're not allowed to preach at you when doing it.

Besides, anybody who can lecture as effectively as you do on making fresh lunches for her kids, which my mother always did, is worth a lot of credit and praise!

Anonymous said...

I have been praying that you would be able to find some small relief and that your life and your vision could expand. I read your blog regularly and find myself asking for comfort for you. I am so glad that this blessing has come to you.

jesslla said...

I'm so happy for you! You've got some amazing friends. *hugs*

Berlzebub said...

@ Anon:
(Sorry, but this ticks me off.)

Gee, anon. Forget about the people that helped to make this happen, it must have been your prayers. [/sarcasm]

Now, I apologize for being snarky, because I know you probably (hopefully?) mean well. However, I have a list of over 100 people who helped actually make this happen. Your assertion that your prayers in some way made this happen dismisses their efforts and generosity for P-Momma's benefit.

While you were praying, we were pooling our resources to actually do something. That you seem to be claiming that your prayers is what made all of this happen is an insult to this effort.

Poodles said...

Holy shit! If this was an answered prayer, that makes Berlzebub god and the rest of us oh I don't know maybe angels?

EXCELLENT!

Berlzebub said...

@ Poodles:
Don't you come to my blog, darlin'? You are all denizens! LOL

fdqpink/Baal's Bum said...

I would be proud to be a denizen of berelzebub
Lets all sacrifice an evangelical to the LORD BERLZEBUB

Poodles said...

Berlzebub, you should start your own sappy tv show. Touched by a Denizen! (Hey better than "touched by a priest")