When it rains, it pours!

Well I know it has been a long time since I have updated everyone on life in the Patel household and how things are going with my illness. I do apologize, but we've been a bit insane around here. My symptoms are still progressing and changing and the pain does continue to get worse, but I am settling in to my "new" existence. I think the shock factor of how bad I felt has now regressed to the point of eery comfortablility. Our life is starting to resemble the olden days in the fact that I am back to taking care of the kids 4 days a week, which I love. It is extremely painful, but I feel that no matter what I do I will hurt so I might as well reconvene with life. I do have help 2 days a week because my cousin comes over while Chintan is at work and for the full shift too! Plus Chintan is home on Sundays, so we have our family day then. I realize that doing this against the doctors orders could very well put me and my fusion at risk, but I feel the benefits outweigh the risks. With pain disorders in general most people lose a lot of mobility, and I have, but if I stay moving while taking care of the kids it puts off my potential future living on four wheels.
So because of my little sabbatical from mommyhood, I was worried that Lydia was a bit behind developmentally. So a friend of mine mentioned having her evaluated by my county's department of education. They came out and did an assessment and determined that in most areas she's right on track, some areas she's ahead for her age, and unfortunately she is a little behind in a couple areas as well. They said that she scored very well during the assessment so that they didn't need to do a formal evaluation, but if I requested one that they would do it. Man, am I glad that I did it! They came today for day 1 of the evaluation to assess her motor, emotional, and social skills. Well they told me that Lydia presented a lot of red flags for autism. I was so broken hearted and instantly thought it was my fault, that if I hadn't gotten sick and was able to focus a lot of attention on her that she wouldn't have these problems. I started to cry and they assured me that autism is in the brain and it's something she's born with. But I swear when you become a mother you carry a lifetime pass to the guilt club. I am so bogged down with worry and fear that my illness has had a terrible impact on my children.
One of my house rules is that there is to be no anger, yelling, or cussing around the kids and as far as my depression and anxiety go I do my very best not to let the kids see it or feel it. I put on my "happy face" for the girls at all times and expect family to do the same. Chintan and I met with Dr. Toll (pain psychologist) and we discussed the kids at length along with a lot of our major stressers right now besides the obvious. It's all mainly financial and lack of sleep. But Dr. Toll was very proud of us for always putting the kids and their well-being first and foremost in our lives and for our positive, spiritual outlook. Although he reassured me that I was doing everything I still worry that it's not enough. On the days people are here to help, I try my best just to focus on me and resting and doing what I need to to feel good in those moments because it's not possible when I'm alone. But then I wonder if I'm being selfish.
Well now with the possibility of autism looming I really need to keep up the good work to continue with Lydia's positive advancement. I swear the girl is a little sponge right now and it makes everyday a new adventure. What is she going to learn? What words is she going to say?
I am sure much like when I was ill as a family we will all pull together and try to stay positive and live in the "now". Lydia is my whole family's "little angel". She's completely latched on to my mom, completely smitten with my brother in law, and really starting to attach to my sister.
She's having a blast getting to know my cousin that comes to take care of us and is starting to open up to her as well. I know our little "villiage" will come together for the spirit of this little girl and she will be the better for it. She is such a strong and bright girl and I know that she will be fine. Her and I are very similar people and we both are very strong-willed and stubborn. I know I don't except limitations at face value and I can tell she is the same way. So please pray for my little girl that she doesn't have autism and that there are just some areas we have to be more productive with.
I go see Dr. Hess (my pain specialist) on Thursday to go over all of my 13 test results! Yes the rheumotologist tested me for that many!! Her thoughts on everything is that it's either RSD or Lupus as well as a severe case of Fibromyalgia. Dr. Toll gave me a list of things to talk to him about that are in his eyes the symptoms of most importance. Those things are lack of sleep (I get approximately 2 or 3 hours a night), restless legs syndrome, pain levels, swelling in my joints and legs, and continuous weight loss. I lost another 10 lbs in 2 weeks, so under normal circumstances, I'd be like "yeah"!!!! Another 50 lbs or so until my goal weight, lol!! No not that much, at that point I'd be a rail, and I like having a bit of junk in my trunk. Or in my case a little jelly in my roll :) I don't get to go see the psychiatrist until June and he's the one who needs to put me on anti-depressants. I am looking forward to see if those help calm down my worries and stress. I know that there are some that say I think about my illness too much and over-analyze and guess-timate the future. But I really think that that is a normal reaction to being sick and in pain and definitely not in "the know". I feel like sometimes because I am so sick sometimes my feelings and thoughts get put on the back burner because it's all just too much. And at that point all I feel is rejection. Being made to feel like a first class reject on top of everything else going on inside my head is just not working for me right now, lol. Obviously, right? So here I go, I am going to keep trekking on in this very important and hopefully informative week. Prayers needed for all of us, please. We all need the strength to get through this exceedingly stressful time. I hope this blog finds you all well. I will try my best to write more often especially with all of the new possible developments to come!!

Hugs and Kisses,
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

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