The Miracle Worker

Well I know I am a few days late, but it's been a very rough week so far. But I finally did get to meet Dr. Hess who is an extreme pain specialist and someone who has worked with RSD patients before. He was wonderful! He was almost the male version of me :) We spent a lot of the appointment (which was 2 hours long) laughing and joking. He really was very comforting and seemed very confident.

We went over all of my symptoms and the dr.s notes. And whenever the subject of paralysis came up he immediately squashed the subject. Saying we arn't there yet and I won't let it happen, I am going to do everything in my power to get you well, etc. He said that he has a lot of colleague/friends from all over the world and he'd send me to Philadelphia, Germany, France, where ever I need to go for treatments. He was so caring and sweet. He switched all of my meds and one of the drugs he put me on was Lyrica. When he mentioned it I told him my insurance wouldn't cover it, so he left and came back with 4 bottles of the Lyrica. So kind and wonderful :) He said he is going to aggressively treat me for systemic RSD, but he did say that he thinks I may also have Lupus. I asked him, how is that possible and he said stress. Who knew?

His main concern along with the pain was my stress level. He is very concerned with how tense I am all the time, all the guilt I feel, all the pain. Dr. Hess explained that my body is naturally going to be very tense because of my high pain levels, but that I need to try to eliminate external stresses. When I told him that it's too hard, that I feel constantly guilty all the time...he responded with "Are you Catholic?". Shoot, might as well be, lol!! I know I do need to calm down, I tell myself that all the time. I know that de-stressing is imperative to calming down the RSD and not putting myself at risk for other possible problems. But when I've lost 90% of my life, 95% of the control, & 99% of my self-control...it's hard to watch the life I loved so much fall to the wayside. Like one of my friends so bluntly said to me yesterday "Don't make a mountain out of a mole hill!" Well, if all I have left are molehills, they are going to feel like mountains. I am going to want to hold on to the little bit of control I have left and in my life, I've got to fight like hell to keep it.
So I go back to see my so-called "miracle worker", in 2 weeks. I am very excited to see what he has for me, to find out what all of his colleagues have to say. He's doing a case study on me and this isn't just inter-office, it's world-wide. He's pulling out the big guns! Woo hoo! I am glad that a doctor finally recognizes how sick and how much pain I am in. And it has seemed to be the pain specialists, so thank God for them! It feels good to look into the eyes of someone who just "gets it." It feels freeing, comforting, non-judgemental, and yes, a bit calming.
I am very ready to get this thing under-control, fight the pain with an arsenol, not a brick.

He also gave me some tips on how to get through the most extreme pain....hee hee... As most of you know I am not one to swear unless very mad or frustrated. And most of that has just started since I've gotten sick, lol!! So Dr. Hess, said to let out a good f**k while I am in pain. And mom and I looked at eachother and then at him and both said together "I/She doesn't swear!" So he laughed and told me then to yell GDRSD! GDRSD! Like my own personal cheer, and I am sure you can figure out what he meant by that term. But I don't take the Lords name in vain, so I'll stick to GoshDarnRSD! LOL!!
Love and Hugs,
Chrissie :)

Fighting the Good Fight

Well today was filled with many blessings...thank goodness! Lol, I needed it! It was my 2nd day in a row with good pain. Good pain to me is a level of about 4 or 5 out of 10. It's definately manageable and I can keep a smile on my face all day with it. So today I was able to take Lydia outside to play on the deck with all of her outdoor toys. She was learning to kick balls (toys, I promise, ha ha...), play on the teeter-totter, and walking up and down the back ramp. So when Lucy woke up my nanny and I walked the girls down to the park and there Lydia learned to climb up the stairs on the jungle gym, go on the slide, and she was repeating words like crazy! I was such a proud mama, she is a sponge right now and I love it when I get to teach her these things. It was such a great blessing!!!

My mom also directed me to a new RSD website where I signed up for a membership where I will recieve quarterly newsletters, a magazine, learn about area support groups, hear "hope" stories, and learn about new medical and legislation information. So I was reading the stories of other RSD patients as I am still on a search to find someone with my type of RSD. Systemic RSD is so rare, that I had yet to find one person who's RSD started out systemically. Well today I found her!

It was a mixed blessing. As I read her medical case study I realized her and I are very similar, almost scarily similar. She too suffered from scoliosis, harrington rod fusion surgery, a 2nd fusion, spinal stenosis, and back and leg pain. Well in 1992 she was diagnosed with systemic RSD after having gone through all that. All of which I've had! The dr.s said it made her susceptible to RSD, I'd never heard that before! Well here's where it gets a bit scary; she was diagnosed in 1992 and by 1993 she was quadropalegic and living in a nursing home at the age of 35. In 1 year she progressed that badly!!! And since then since it had spread to her abdomen the pain was so severe it caused complications in her intenstines and colon. She's had her colon removed, has "dumping" syndrome (yes it's just as gross as it sounds, lol), and she's had a heart attack. So as of now with treatments she now has her pain successfully reduced to a level 4 and she can finally be in public again like going to church, concerts, family functions, etc. (Positive!)

Well I thought to myself I have 2 options when dealing with this information. I can either 1, assume I will follow in her footsteps and start preparing mentally for being paralyzed by the age of 30, or 2, I can fight. Fight like hell to regain some control of my destiny.

On the physical side of it, it will be tricky as friends reminded me that I am still recovering from my spinal fusion surgery that has a 6-9 month recovery period. So I will still be careful with overdoing it on that respect, but I am gonna start moving. I don't care how high my pain level is that day, I am gonna take a breath, say a prayer, and move. I am refusing to give up on my body before it gives up on me.

Now emotional, it will be a different story. Severe depression and anxiety are huge symptoms of RSD, so (as I am sure you all have noticed by now) I have very big highs and very big lows. Hello Captain Obvious, right??? LOL!! But I am hoping if my head can stop playing tricks on me and I can just accept myself for who I am now, I can really try to fight this. I need to stop this back and forth crap in my head of the dr.s are wrong, oh they are definately right, well maybe they are wrong. It is very obvious I have this disorder, I just have to get my head and heart to match up.

And spiritually, which in the past (even as of 2 weeks ago) would have been my easiest struggle. In fact it wouldn't have even been one. God is all powerful, he has a plan, I need to trust in it and believe that I can get through anything with him on my side, right? Yeah that's what I've been telling myself my whole life. But I've never been shaken to the core like this before. Even with all I've been through and some of you know all of those dirty details, I've never felt this forsaken before. I think it's because this time I have so many more cards on the table, so much more to lose, so much more to fight for. My girls, oh my precious babies, they need me...we are so close the 3 of us. And when you add Chintan into the mix, we are a really tight unit. So it's time to stop being so selfish and I need to realize that God is a busy man, with all the heartache out there and need to realize I can't be priority #1 right now to him and that's okay. He's gotten me through plenty other things in the past. And I know now it's like he was suiting me with armor to fight this fight. And I do know that if things get really sticky he'll step in and do what he feels best. I have to believe that, I need to believe that, and trust in that.

So that's it! I choose the fight and I'm telling ya, I'm a tough cookie!

Frustration, Desperation, Anger=Sunshine & Rainbows??

I am desperately trying my best to stay positive, living by my motto, sunshine and rainbows. I promise you I am. But where the heck is all the damn sunshine and where the bleep is that darn pretty rainbow??? RSD has taken my once happy, bubbly persona and turned me into a bitter and angry person. (Don't worry not all the time!) It's just that I have my days and they are becoming more frequent, and to be frank, it's worrying me.
I'm that girl...that special breed of big smiles, loud jokes, and infectious laughs. It's being replaced by half smiles, sarcasm, and fake laughs. I can't shake it. And now, today, which has been an unbearable low I am am doing the unimaginable, the cowardly, the embarrassing....I am questioning God and his love for me. The one constant in my life that I've been able to turn to in good and bad and trust in his plan. If I have no trust, can I have belief? I feel like he has forgotten about us. We had our hopes and prayers tied up in possible job situation for Chintan that would have really lightened our load and made it possible for us to breathe. Well, we found out today that it isn't happening and to top it all off he informs me that his current employer is really putting the heat on his division at work; no commissions=no job.
I also found out that my nanny and her mother in law are very actively pursuing other jobs to get her out of here all in the same day that I finally got up the nerve to tell my mother that I am definately not comfortable having the girls in daycare.
I am lost, I don't know whether I am coming or going. I know now that I just need to push through the pain and fatigue and just leap back into my life before RSD. Which is bitter sweet. Bitter because I know that it will greatly risk progressing my disorder, but sweet because I'll be back to being a full time mommy plus I can take the stress of Chintan of having to pay for a nanny. I also know that if I let my nanny go, I can no longer go to water therapy which I know is vital to my disorder. But I feel I need to sacrafice myself for my family. I am the one causing all the pain and instability so if I can take it away it will relieve stress for my husband and mother, plus erase my guilt of needing them so much. I know my husband will love having the financial cushion and my mom wants the summer off, so this to me is the only logical solution.
Now I just need to find my way back to God or pray that he will find his way back to us. I am going to need him as I risk everything. I need him to give me strength everyday because he has it in droves and I have little to none.
I just want to go about life like I don't have RSD, I just want to pretend that it's back pain that I can't do anything about like before. I've worked through pain for a very long time and I know that I can be strong enough to handle it. Hopefully with God by my side, if he'll have me back.
Love and Hugs
Chrissie

Hair today, Gone tomorrow

Well this is my much anticipated blog about my hair. My hair, once a muse for my creativity, now is falling out and breaking off like crazy. Hair is my thing, mine, yours, strangers, etc. Especially those people you see in walmart who are desperate for a makeover, I fantasize about what I'd do for them in my salon chair (colors, foils, cuts, and wax...oh definately wax!) But now my once beautiful thick blonde hair is now gone. Even when it was short it was soooo thick and luscious! It was my thing! So for quite a while now it has been falling out and now breaking off. It's due to my circulatory system. Damn the circulatory system! LOL!! So now I have decided to chop it! It was way fun and so empowering to say goodbye to my broken thin ends. I knew I was risking my hair looking even more patchy and thin, but I decided to go for comfort over vanity. Shocking I know...Vanity runs in my genes. All of the women in my family put our looks first. We definately have that "pretty" gene going on. My sister has it on steriods...she is GORGEOUS!! But mom and I figure once it's really bad that I am gonna get "wiggy" with it. My grandma is ready for one too, so we are gonna go shopping for one (or two or three) together. I've got to save up though because human hair wigs arn't cheap. I know I am frugal, but when it comes to my hair, synthetic just won't due. So hopefully I can get a couple cute styles. I am thinking definately one has to be curly. I've always wanted naturally curly hair, I've always been jealous of those girls with some kink! *wink* Ha Ha!! So my positive for this is: I get to learn a whole new facet of beauty...wig styling. I know it doesn't sound that glamourous, but hey I'll take what I can get..lol!!
Love and Hugs
Chrissie

The Beast of Burdens

The title of today's blog is based on my reflections during this week. This week has been a toughy as I start to realize the reality of my illness and all that it means to the ones I love. I was just reminded of how I have a very hard time feeling for myself because I am so consumed with the feelings of others. When you are faced with an illness of this magnitude (or any medical condition, I suppose) knowing how it effects others can be very stressful. I constantly worry about how my illness is playing with the emotions and stresses of my loved ones. And this could be a serious reason I am as sick as I am. Unfortunately the symptoms of RSD are greatly exascurbated by stress and emotions. But telling someone who is going through something so stressful not to stress is like telling a fat kid he can't have the last peice of chocolate cake. You better believe that after you go to bed he's sneaking the last morsel (trust me I know this from experience...I am that kid...literally and hypothetically, lol) I know that my illness is greatly inconviencing my family. My mom has given up her weekends for the past 3 months to be here with us while my husband works. My husband works 2 full time jobs and then comes home to be a single parent on less than 3 hours of sleep a night. My children are being cared for by a nanny and others instead of their mother.
My offical job title is stay at home mom, which I am living up to fairly well...I stay at home...3 out of 4 aint bad, right? :)
My mom has noticed that they arn't being stimulated and played with like they should and I feel a tremendous amount of guilt that people feel they are behind developmentally. It's a reminder of how I have let them down as a mother. That the 1/4 of my job title that I am not fufulling is the most important part.
The weight of worry on my shoulders is so overwhelming that I don't have time to worry about the toll it is taking on my body, but I worry so much about the toll it takes on others. We really have very little help for an illness categorized so often as "extreme". It's my husband, my mother, and my nanny having to fill up a weeks worth of work and outside of this house they all have other jobs. I have become a responsibility to shoulder instead of a joy to bear. People used to want to be around me and now they are retreating at the speed of light because some find it too akward. They often just don't know what to say. When all I want is a sense of normalcy, be my friend, like it was before RSD became my companion. They fear telling me the stresses of their day and often say that they know it's nothing in comparison to what I am going through. When it's not true and I would never think that way. It's all relative really. What is impacting my loved one's lives is real and I want to be a part of it and offer the kind words and compassion I am known for. Instead conversations are left abruptly and I am left with a sense of sadness. I try not to bring up my health unless asked, because I don't want to burden people with my situation. So thank God for this blog, I can try to get it all out here so there for my conversations arn't overtaken by my one and only selfish companion. I am going to continue to put a smile on my face and laugh through the tears because I refuse to let RSD be my best friend. It's far too controlling and narcissistic. So where is the positive in today's lesson? This time I am genuenly asking....how do I take away the weight of burden with out being a burden to others?

Love and Hugs

Chrissie

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