Another Nail in the Coffin

No, I am not being morbid about my possible future with RSD. I am talking about my actual nails. They feel like they are dying off, literally. They grow with the speed of light and fall of and break even faster. It's not just my finger nails either, it's my toes too. They are rigid, peel, crack, and are becoming very painful. They grow so fast that I am getting in-grown nails in my fingers and toes. And because they are constantly breaking off in peices, I've resorted to becoming a nail biter (fingers, not toes..lol) I know I am gross now, but not that gross, lol! So one day my nails will be bitten down to the nubs and within a couple of days I have white tips again...blessing in disguise if you ask me! I've been told this is happening because RSD, which directly affects your central nervous system, quickly spreads to your other systems, and what it's really starting to effect is my circulatory system. So that's why my nails are so bad now. But I am a bit nervous because if it can cause this with in 3 months how fast is it going to effect my other systems. It atrophies your muscular system and skeletal systems as well. Hopefully the treatments will be able to hold that off just a little longer. The dr. said it's already in every facet of my body but to varying degrees. My skin, hair, and nails are the first to go....hopefully this bastard will leave my bones alone for awhile. My muscles are already very much affected as they are constantly spasming, and whatever system your joints are associated with is starting to fail me as well. I guess if it's going to start taking my beauty away I can get used to that. I can fake it till I make it. Ha! I went to beauty school, I know how to create the look of volume in hair, cover up bald patches, work with red and cracked skin. But how do you makeover your insides? I can't add a deep conditioning treatment to my bones to strengthen them, I can't put lotion on my muscles to retain their elasticity, and I can't do a rejuvinating treatment to my blood and nerves to get them to flow right. So I guess, I will do what I am famous for and that is try to make my outside perfect so no one can see the damage on my inside. At least I have many years of practice! Ha Ha!! But my heart won't be touched by this disease which to me is my most prized possesion. It's large and strong, it takes an amazing amount of care. But I have the best medication for it. My wonderful family, my amazing friends, and my gracious Lord. They are the best protection from this disease, they help it stay open and functioning properly. And because of them while I am here on this earth my heart will remain strong and full of love all the days of my life...everlasting.
Love and Hugs,
Chrissie

Humble and More Humbled

Well my peeps it was my first day at water therapy at the Courage Center. For a place that has such an inspirational name, as I left I had to ask myself, where was the courage? To be perfectly honest my first experience at this place really left a bad taste in my mouth. I went a few weeks ago for a tour and for my assesment and I quickly realized how much I did not fit in there. I realize this place is a wonderful facility to help the disabled and elderly, but where do I fit in there? As I walked in with my nanny I kept up with the classic Chrissie defense mechanism...jokes...lots and lots of jokes. And embarrassing enough they were toward my courage center counterparts. I walked in to the locker room waiting for my eyes to burn as they had the first time when I was at wheelchair level to old naked women everywhere. I mean I know I am outgoing and free spirited, but not that much...I don't even like to see myself naked. I mean if I have to see naked women at least give me a decent rack to be jealous of, ya know? So after privately dressing into my swimsuit nanny and I headed off to the pool where the uncomfortable jokes continued as we sat and waited for my therapist to come get me. I looked around and saw all of these people in there twilight years (meaning old people, not tweens obsessed with the books, lol) I thought to myself man I don't belong here, these people wear their handicaps on their sleeves. Meaning being elderly, being in a wheelchair, or having a mental disablity. Again I ask....where do I belong??
So my therapist approached me, an adorable young girl, who quickly made me feel uncomfortable because we are likely similar in age, but looked years apart. Humbled.
Then we get into the pool and she tells me it's 92 degrees and it's likely to be a harsh sensation and to be careful. I thought to myself...ha...you don't know me at all, I love the water! I used to be a fish...Humbled. It felt like my skin was being rolled over by a steam roller, not just because of the painful pressure on my skin, but I instantly broke out into a sweating fit. I could barely walk, each step felt like I was walking on sand paper. She informed me that the therapy was for an hour, but not to feel like I needed to last the whole time, that I could stop whenever I needed to. I was determined to prove to myself and everyone in there that in fact I didn't belong and that I could handle anything this age-appropriate therapist could throw at me. Humbled. We started by navigateing the slopes to the deeper end of the pool where I saw a man that was at least 80 years old quickly walk up, I needed to baby step it and hold on to a railing for dear life. Then as we began therapy we started by walking baby-step laps and talking. I could barely pay attention to her because of the group therapy next to me singing as they swam with their noodles. I have no idea what they were chanting about but in my head it went something like this "We're stronger than you! You are a wimp! We need to shut up so you don't scream at us like a 2 year old!" The therapist was trying to explain more about my RSD, how this was an accomplishment and not a failure. Yeah, maybe to you lady...you arn't feeling like taking these people's noodles and beating them over the head with them. To me, that's a failure. I am supposed to be the compassionate nice one. And now RSD is turning me into a raging bitch (thank God, only in my head). Humbled. So to make a long blog a little shorter. I lasted only a half hour and it ended with me completely braking down and balling in the pool as I realized that RSD was taking yet another I used to love away from me. And as I embarrassingly pulled my head up I saw that all of these people that I had so harshly judged were looking at me with compassion and understanding. The one thing I couldn't give to them but yet want from everyone else. Humbled. My therapist reminded me that RSD plays mind games on you and others because on the outside you look perfectly fine (especially when you can fake a smile with the best of them, my own personal accomplishment!). That other disablities and handicaps you can see from the outside, but mine is on the inside. With most handicaps you can see people's personal hell, but mine is sheltered behind my somewhat normal looking self and my perfected fake smile and laugh. Overall it was a very humbling experience and a very scary experience. Scary, because I learned a lot of harsh realities about myself. That I am not the bubbly, happy, positive person everyone and myself wants me to be. But that sadly I am not perfect and I am allowed to except my imperfections, insecurities, and eventually my disability. Soon I will look like those people, and no longer will I have to hide behind my persona. And I am growing okay with RSD taking some of that away, just as long as it doesn't take my spirit. That's off limits. That's all mine.
Humbly,
Chrissie

To sweat or not to sweat...that is the question??

Well one of the awesome side effects of RSD is extreme sweating....extreme doesn't describe it properly. If sweating were a sport or a competition, I'd be America's Next Top Mop. I have to decide daily whether or not if I can handle moving off of my chair or getting out of bed not just because of the pain but also if I feel like dehydrating. Today I attempted to pick up Lydia's room and fix her some lunch, I'd like to say her peice of pizza was soggy because I nuked it in the microwave, but hey the jig is up...my daughter consumed sweat for lunch. Gross, I know...but hey it is what it is...lol. I sat outside for a while in a tank top, now I know I am a Minnesotan and as soon as it gets nice out we approach the world with t-shirts and shorts. But 50 degrees and a tank top is a little extreme, but hey at least being outside dryed my hair a little quicker. Not to mention giving the term B.O. a run for it's money. I definately don't smell like a pretty girl anymore...more like a burly long haul trucker that showers at pit stops once a month. Scary, but true. Ha! I try to find a positive in each of my symptoms and my conclusion to this is...I'm not sweating, I am deep conditioning my hair. After all your own oils are the best treatment for dry hair. (Which is another side effect with RSD...dry, brittle hair that grows like a weed and falls out all the time.) Stay tuned for that blog entitled: Hair today..gone tomorrow, lol! Hope you are all well :)
Love and Hugs,
Chrissie

I am officially blogging!!!!!

Well it's my first official blog...yeah! I have decided to set up a blog as sort of a diary for myself and others to help deal with my RSD. The diagnosis is still fresh, I barely understand a darn thing about it. Just that it is attempting to rule my life (or lack there of, lol), and I am fighting like heck not to allow it. It officially stands for Reflex Sympathetic Dystrophy (which dr.s say sufferers really have none of the above, not the first weird thing about this you will hear), but my husband says it just means I have a case of the Really Sexy Divas...god bless him, because I really don't have that either. But hey, I'll go with it, because at least he thinks I do :)
RSD is attempting to take all the things I love away. The main thing are my gorgeous daughters. I fought and prayed like heck to have them and now I can barely do a darn thing to take care of them. In fact a month ago I was fighting and crying because I refused to let them spend any time away from me and now I can't stand to even be in the same room as them. And they are gorgeous, I mean seriously, not like how most parents think their kids are goregeous even when they resemble Homer Simpson, I mean I get stopped non-stop because of these kids. I feel like they up my pimp-factor, lol! Plus I used to be a hairstylist and a good one at that. It was the only thing in life I was anal about. I loved it! It filled my creativity tank like crazy! I stopped when I was pregnant with Lydia, I was in too much pain from my back which is what started me down this path. But it was bitter sweet because I was finally a stay at home mom, which in all honesty is all I wanted to do with my life. I wanted to be Carol Brady...with much cooler hair...and more dorky, but also more cool....and really laid back, but still goofy with the dumb corny jokes and all that jazz. I set out to be the best darn wife and mother ever....actually like Roseanne (one of my personal favorite t.v. shows) So like a Carol Brady/Roseanne combo. And I was too!! I rocked at it. My life was vieing on perfect. I had a great husband, 2 beautiful kids, a new (and very cute, I might add) house, and 2 smelly cats. Then a couple months after I had Lucy all things changed when the dr.s said I needed a 2nd back surgery because my lower back looked like a grenade exploded on it. And during my spinal fusion I developed RSD.
I am working everyday on staying positive and trying to triumph over this disorder. Some days I lose, some days I win. I know what my future holds as far as becoming paralyzed and handicapped goes, but I figure I am not there yet. I will stay hopeful, besides the dr.s can say this will happen or that will happen but only God knows. So as far as I go it's Sunshine and Rainbows for me...lol!!
I will use this blog to inform everyone about my RSD, if I got into everything in this one blog I'd be blogging for ours and to be perfectly honest my butt (literally) can't handle it. My left butt cheek is tingling and spasming as we speak, er...read..or type. whatever...you get the point. But most importantly I need to journal this journey for me, for you, for RSD. Because (here comes cheesy quote..) I may have RSD but it doesn't have me. Now throw rotten fruit as you please or cheer with a tiny tear flowing down your cheek...I'll except either.
Lots of Love and hugs,
Chrissie