**This is what I am wearing today. I like to dress up when I feel awful, even if I am just sitting on my couch all day. I should probably take more than one photo and put some makeup on so I don't look how I feel, but oh well... Like I care at this point in my life.
This is what I LOVE about my life... after I declared myself safe on "home base" (aka my couch) only to wander away from it to eat and use the bathroom, my fiance came over to wipe my tears away and make me laugh all evening. PLUS, my dad bought me this new bathing suit that I was able to pick out for our new pool :-) (MAJOR sales at VS). They both know how to make me smile... oh, and I also picked up this hottie tottie AA dress in light pink. The color reminded me of the gorgeous flowered bushes outside my front door.
A lot has happened since I have woken up from a painless slumber. You'd think I would wish to always be dreaming since it is the only time I have no pain, but I love engaging life too much for that to become my only desire. My morphine has been increased to 10mg, but after having a long conversation with the nurse, it became clear that she is not counting on the morphine to be my liberator. I am to call if this increase does not help so that I can get in to see my doctor earlier than scheduled.
Also, my father did some research, and we are off to see the rheumatologist who diagnosed me with RSD due to my raised antinuclear antibodies and the obvious discoloration. Research is proving RSD to be autoimmune, and when you stare a wheelchair in the face every single day, you begin to think outside of the box. We are hoping to try the immune suppressant, Enbrel, with my young doctor who seems to be willing to think outside of the box with me and my desperation.
I am already on borrowed time.
I am so friggen lucky that I have health insurance. I am so grateful for that every single day.
8 comments:
i think we're all on borrowed time :/ i try to remind myself of that often because you just never know...
ut, what I really wanted to say to you is
that dress is SUPER HOT! good for you, and model it soooooooooon!
wow, that is tough. i have no idea how you must feel. but i CAN employ a bit of humor - imagine if you could only spend a few minutes each day sitting or laying down, wouldn't that be AWFUL!?!?!?! i just love to relax on my couch, as i've read you do too :) and standing is admittedly not my thing. i have had several lung surgeries and can't run, so i admire your marathon days! my brother and sister are both in the iron man competitions and i think they are crazy haha!! hope you are feeling good today!
i've had lots of collapsed lungs and nobody knows why... their best advice is to take it easy... forever! and i can totally deal with that!!
well... not really :) but i think i will subscribe to your blog and keep track of how you are feeling. send you pictures of puppies or something if you've had a bad day!
Hi Maria,
You are such a strong individual, and I pray you will not let RSD bring you down!!
I really don't think you will, but from some of the things you say, it seems as if there is a feeling of frustration or being overwhelmed with it. Which is completely normal and to be expected.
I do however love the fact that you are taking pride in the clothes you wear....even though you are on the couch all day.
Being on the couch all day is one of the things that bugs me.
So I will close this with a couple of famous quotes that hopefully you can relate to. =)
"Whether you think you can or whether you think you can't, you are right!"
~Henry Ford~"Nothing in the world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; the world is full of educated derelicts.Persistence and determination alone are omnipotent."
~Calvin Coolidge~30th President
"Time is the most valuable thing a man can spend."
~Laertuis Diogenes~Ya know, when you face a difficult challenge, you also have the opportunity to grow stronger, more capable, wiser, experienced, and resilient. So embrace those opportunities because in them you will find the sweet substances of life!!
If you need anything, I am always here for you Maria!!
Keep Growing Yourself,
Keep Expanding Your Skills, &
Keep Moving Forward!
Love Ya,
Coach Marla
Maria, you don't need any cosmetics to make yourself look like anything but the naturally gorgeous young woman you are! I love your smile and glowing skin - I'm a former esthetician; we have skin fetishes! LOL.
Glad to hear of the Enbrel idea! Wow, that's really interesting! I look forward to hearing how it works/if it does. Will be praying/meditating on that for you - for US!
Yes, even the big M for morphine doesn't necessarily do much. I pray the higher dose will help and that you can get another up-dose soon from the doc.
It sounds scary like morphine, but I've met a couple of people who are taking methadone and they say it's been amazing (one has CRPS, the other another condition) and that they are actually clear-headed on it, rather than the other medications which left them stupefied, if somewhat less in pain...
Sorry if I mentioned that already; I take Lyrica - it REALLY helps my pain but sheesh, my once infamous memory is crap, I tell ya! ;) Oh, well... it's an ok sacrifice at this point but scares me when I'm considering returning to school... but I digress (as usual).
Thanks for giving me a heads-up about this post, sweetie!
Love you so much, sister!
<3 L <3
How does Enbrel work for RSD? I want some form of medication to help my crazy pain. I hope that I can be as strong as you! Please write back!
thx! I'll look into it with my doctor.
Post a Comment