Heading in the right direction

Decisions, decisions, what's a girl to do? Within these last couple weeks as my quest for independence is becoming more like a reality I've been hit with more tough decisions that only I can make for myself. I need to decided if I should cut my losses and put my house on the market. I am thinking I may not even have a choice at this point seeing that my sub flooring is falling out from underneath me. A few weeks ago I got out of the shower in the master bathroom and took a step and the floor crushed underneath my feet. Now I know I am a big girl but if it didn't do this 110 lbs ago, why now? So then my next thought was it must be water damage since it happened after showering. I was just sick with worry and since I have no idea what I am looking at or that I don't even know if I could maneuver getting downstairs I decided to wait and have a professional look at the flooring. Well then the next day it happened again, this time in the living room. Again I stepped and then squished. I seriously thought about calling weight watchers that moment. I instantly started crying and thought, "seriously"? This is happening to me? I made some calls and finally a week later a very nice man from a charity program agreed to come out and look at what I was dealing with.
What he found was that, thank God, it wasn't water damage but that my sub floor is just made of crap and was giving out. So he said that my master bath and living room floors needed to be replaced. Yuck. And he said it would be approximately $1500 in materials alone. Double Yuck.
Naturally, I don't have it. Of course why would it be that easy? So the only way I see this working out is that I am going to have to sell and try to find something out there in my price range that is structurally sound.
Now we bought this house over a year and 1/2 ago for $115,000, but we've put near $25,000 of work into it. I know in this market I will not come out even, not even close. But I am having a realtor come out tomorrow to give me an idea of what we can list it for.
Truthfully, I don't want to sell. I love my house. It's so cute, it decorated, painted and set up perfectly for my family of 3. I love my neighborhood, my yard, my town...all of it. But to me there is no other answer.
So I am hoping buyers see that it has a new roof, new siding, new floors in the laundry, kitchen and dining room, new appliances, new furnace, new water heater, new toilet in master, new bathroom mirrors, new paint everywhere, new ceilings, new door knobs, new hardware in kitchen, new garage door and two new windows. And I am really hoping they look past the $1,500 in flooring that needs to be repaired. I don't know if I can just put an allowance in the purchase price or not. I have no idea.

I also have no idea where to go. The one blessing of being a disabled mom is that I can go anywhere. I am not tied to any specific region. I went last weekend and looked at a very cute house just south of Rochester. I loved the house, not so much the town. I do have a good friend that lives down there so I would have someone to help every now and then and also then have some company. *See my happy dance, lol!* Do I sell it and not even know where I am going? Or can I stay and just not use the master bath and deal with a bad spot in the living room? Is that safe for the girls and I? So many questions, so little answers. I don't even know if I have the knowledge of these things to make a correct decision. I am just not finding that I can get answers to these questions without someone trying to sway my decision. And this needs to be something I decide for myself.

This is a decision I need to make on my own with the best interests of my children in mind. I know all of us love our home, but we could love the next place as well. The problem is everything we do is just us alone. I'd have to hire movers and probably packers too because of my immobility and I'd need to have a garage sale to sell my mountain of baby stuff and yes I am even willing to part with all of my Marilyn memorabilia as well. I still need to find a home for my cats or save even more money I do not have to bring them to a no-kill shelter.

The other factor is that if I do sell for the amount I am hoping for I may have enough money to pay off back taxes, some other debts, file for my bankruptcy (mounting medical bills!), and then have enough to put down on a home. Here is another major part of it, if I do move more than likely I would have to move into a manufactured home, because I could buy it outright or they would finance me because they'll pretty much finance anyone. Bonus, I could buy new and not have to worry about major house repairs for a long time; bummer, I'd have to live in a manufactured home community and from what I know of them that they are crime and drug-user filled and probably not a great place to raise kids. I know that it is a complete judgement on my part and probably a huge stereo-type, but the more people I talk to about it the more confirmation on those judgements are coming to light. So I was thinking maybe there is a community more out of the metro that is more family-friendly? Another question without an easy answer?

So this blog is basically throwing out all of my questions and thoughts plaguing my mind right now. Lydia is using the entire house and it's contents as a trampoline right now and everytime she is flying-high in the living room my heart jumps for fear of finding her in the basement, lol! Funny, but true, I know. I need to make a decision quick and in the mean time I have been cleaning and decluttering like a crazy lady getting it ready to sell, because my instincts tell me that that is my only option right now. Also it's helping me keep my mind off that fact that divorce papers are in the mail right now waiting to be signed therefore my marriage is waiting to end.
Too many changes, too many thoughts, not enough answers.
Good thing I've begun therapy....

Hugs and kisses to you all!!

P.s. I am finally one only 2 meds, and guess what they are working and I am feeling soooo much better. Bad pain days are few and good ones are many!!! So lurking among the hard decisions are good blessings...yeah God!!!

Hello Again World

Well today has been a very inspiring day for me. I spent it with my family at the park and also with a very dear friend from my childhood. Which taught me that you never know what God has planned for you. It's definitely true that when he closes a door, he opens a window. My friend came over to originally take pictures of the girls for their birthdays, but it turned into a very active day for all of us at the park. We donned the girls in pink ballerina suits and just let them loose. Chintan and I played with them as we would any other day. We hugged and kissed them a million times because let's face it their faces are smothered daily and have been since the day they were born! It was so much fun to feel "normal" again. It was so much fun, and good..a good pain day.

Writing this brings me to tears because I am so happy. Being with my family today as we played as one and knowing it's captured on film feels so good. I know now that in my most painful days I will have pictures to look at that will let me know that their are more of those to come. I will see the joy on the girls faces, and Chintan's, and mine. That kind of happiness that only happens for us every so often. The kind where any smile is infectious. It was a perfect day.

Because I know days like these are possible and probably because I am spontaneous to a fault, I am yet again going for the gauntlet. I am again trying to get off my prescription meds. On Thursday I went and saw my family dr. and told him that I was having a lot of difficulty at the pain center. I told him I wanted out and I wanted off the med that they had me on. Like I've been saying for months it doesn't work and I don't see the point in taking these meds if my pain is not being reduced. So he switched me to a pain med that is in a patch form not a pill. I thought this could be the ticket, I knew the effect should of been immediate so I couldn't wait to put it on and sit there as my pain dissipated. Well after I put it on, I waited to feel it go down, I waited and waited and waited. Finally it was 24 hours later, I had a bad night of sleep and I thought that's it, again I say...I am done. And this time I am NOT telling any dr. of mine. I refust to be talked back to going on those.

So I am back dancing with the withdrawals, but I am taking a new approach to weaning off. I hope it works, so far it's not too bad. I feel it, but it's not overwhelming. "Knock on Wood", yes please do it...now if you will.

I hope this time I can conquer it. I just keep going back to hearing that narcotic pain meds effect nerve pain. And I do know that my muscular pain is really bad as well. But ibuprofen and a heating pad can at least take the edge off muscular pain. I am used to that, I can do muscle pain standing on my head, it's the nerve pain that's relentless.

I just am ready to do whatever it takes to get my life back. I am waking up and praying for God to fill my "grace tank" to get me through the day. And I believe he will.

This wonderful day has been a god-sent just what I needed to remind me that there is a life out there still worth living in. The girls and I take our walks everyday, but I think it's time to spend some more time at the park. Getting our jolly's out as I like to say.

Hope all is well !!
Chrissie

My Side of the Story

The words imperfection and insecurity are two words that have played a major role in my life. And for a while there they were the star cast. But now as I am dreadingly approaching 30 my life has taken quite a few turns that have tested one of my players to the core. Insecurity.
I know we are all imperfect beings and I am okay with that. If someone really wanted to dig deep I am sure they could find some pretty twisted imperfections in my past, which in turn has spun insecurity out of control. I have heavily relied on others opinions of me and my intentions to give me that sense of confidence. To a fault I have done this. I believe when people make mistakes intentional or not and they have learned from that and grown, it's time to pack up those mistakes and put it on the shelf labeled "past". Then when you fast forward your life to the point where all of your "big" mistakes are on your shelf, it's time to leave them there. But occasionally you run into the people that can't leave yours there. They pick up bits and pieces of each bad decision and carry it over into your present and then throw them in your face when the mood strikes them. I call these people, cowards. Do you really have nothing better to say, or is your point not strong enough that you just put a label on someone and never give them a real chance to drop it? My problem is that I've let these people decide for me when to drop my own label. I realize actions speak louder than words. And I have tried. Tried and tried and tried. But with what I have gone through, which I realize is very difficult for some to show any compassion or empathy to a piece of crap like me, has made me a million times stronger. And again I have not been an angel. I do forget things so easily, there are days where I am in so much pain I am not Suzie sunshine. I get it I should write things down more, I should perfect my "pain" demeanor to include no slips. Believe me I am getting there. Have I hurt, yes? Intentionally, no.

Then there is insecurity. I have a lot of that as well. But my insecurity breeds from years of being told I am not good enough. Including me telling me I am not good enough.
I swore to myself that when I had babies, that would change. I was doing great, I was so proud of myself. But pain ruled it's ugly head and my life became full of limitations. I will take the blame for a lot of crap in my life, but there are certain things I will not take credit for and that is having a screwed up spine and getting RSD. Those two things were out of my control and to top it all off, took away all of my control. I had to rely on others without having many ways to reciprocate, which has left me feeling like a burden and most of all insecure. But my question to you is where do some find it comforting to throw something like that in someones face? Especially when I would never do that to them. I would never take mistakes from ones past and throw them in there face to prove a point. It's hurtful and mean. And when it's done while you are accusing one of the same things, it doesn't give you a leg to stand on.

Bottom line is that in the last month as I have struggled yet again to make sense of my world and am trying so hard to stand on my own two feet. Kicking someone while they are just getting some balance is low. I am almost 30, I am not ignorant, I am not perfect, I don't intentionally hurt people, I am fallible, I say inappropriate things out of strong emotion, I forgive. I just want so badly some control back, some independence back, I want choices again, I want to be able to stand up for myself finally, I want to follow my own rules of conduct not someone else's, and to top it all of I don't want to fight with family. I don't want drama. My mother, my daughter, and I all are struggling with scenarios where stress exacerbates our situations. I have been trying to de-stress life for myself, my daughter, and my mother. But I am tired of every time I feel like I am doing something good, my actions are called into question. I am not ignorant, but I am not one to follow every social grace out there. I am, by admission, a very laid back person. If I want to plan something for my daughter I want to be able to do it, without having everything pointed out to me that I have done wrong. Who says it's wrong. Life doesn't revolve around certain rules of propriety. I know I don't.

So here I go embarking on another thing that is socially wrong, and I am sure is viewed as narcissistic and attention seeking as I hit publish on this very public diary. Think what you want. This is my life and I will live it as I see fit. I have a very dear friend who is like a sister to me that can tell me like it is in almost every situation, so no, I don't want or expect people to kiss my ass. But I love that while giving me those hard knocks she has never once judged me for my past, present, or future.
So yes, here is another vent. But I needed to get it off my chest right away, because it's just me and the girls tonight and I want to be all the mommy I can be to them. Which in my book, is looking like perfection.

Boosting my Inner Wellness

This is my letter to All You magazine for there Healthy Living section. I thought I'd enter my story to see what happens. I figure what have I got to lose!!! It's something I would have never had the guts to do, but lately I feel that life is too short and I think that my story could really help others. And bottom line is that I've always felt the quickest way to forget your problems is to help someone else with their own. And my own issues have been controlling my life way too long. It's time to step out of my box and offer some kind words and thoughts to others, and in the process it will only help me feel better. So I figure this was a good place to start:



Dear All You,

I was just reading my August issue and was reading the health section, which has always been the section I would skim through or just avoid all together. I saw at the bottom of the page "tell us how you lost weight and successfully kept it off." I thought well, I lost 105 lbs, I should write in. Then I thought to myself well, I may not count because I lost my weight due to an illness. But I think I do count because I feel that my determination to regain my health, mind and body should be considered.

Last Christmas I recieved my second spinal fusion surgery due to a very damaged spine rooted from a terrible case of scoliosis as a child. Due to that surgery I contracted a rare and debilitating neurological disorder called Complex Regional Pain Syndrome. Where my body doesn't correctly heal from injuries and recognizes pain throughout my body that isn't there. It is said to be the most painful condition that exists, surpassing natural child birth on most pain scales. For months I laid in bed and had to isolate myself away from my family. My children laughing and playing, or let's facing crying and screaming caused jolts of pain throughout my entire body and would ignite my "fight or flight" response in my sympathetic nerve system.

Due to the high pain levels and the amount of meds that I was on, I was constantly in a state of nausea and usually if I ate I would directly throw up. Because of that my weight plummeted. I had been about 270 or so pounds. Well now 7 months later I am somewhere between 160-170. I try not to weigh myself too much. I never have but before it was because I was too scared to see the number, and now I don't think I am too comfortable in this body therefore I don't want to be obsessed with numbers.

So yes, I did lose the weight in a very bad manner, but here is where I believe I deserve a little credit; about a month ago I was lying in bed in a wrath of pain, barely coherent and I glanced over to my dresser and saw nothing but a sea of pill bottles. And at that moment I knew I was done. For me, my girls, my husband, my family, all I knew was I was done. I sat up and prayed for awhile for the strength and grace to do what I was about to do. I stopped taking them and immediately grabbed my walker and started walking laps around my house. I did that for a few days until my legs got some stability and I did laps without the walker. Apathy of the muscles and bones is a big side affect of CRPS, so I knew if I wanted to get through this I needed to move. I figured it hurts no matter what I do, so do I waste away in pain or do I live in pain. I choose life. I have 2 small children. Lucy is 11 months and I have missed out on nearly half of her life. My daughter Lydia is 2 and was just diagnosed with a strong case of autism about 4 months ago. My girls needed me and I let CRPS take me away. Not anymore.

I am moving everyday, I get out of bed in the morning and do not return until night. If I need to rest I will in the living room around my girls. I do have wonderful volunteers who have been helping with the kids since I got sick. And with Lydia's autism she will soon have a personal care attendent. The thing that I have to work on the most is eating without gaining all of my weight back. So I do eat, but for the first time in my life I am trying to eat a balanced diet. I switched to whole grain bread, drink vitamin water 0 instead of diet pepsi, and probably the biggest shock to everyone who knows me is that I am eating fruits...and VEGGIES! I even ate raw spinach in a salad for the first time and really enjoyed it. I thought my sister was going to pass out at the news of that.

I had great control finally after months, I was doing so well. Then that day happened, right after 4th of July, my biological father was in town, I attended a family picnic after months of being home bound, Lydia was improving, I was improving, Lucy was saying first words, and then...the unthinkable happened. My husband of 8 years announced over the phone to me that he was leaving. He was exhausted, stressed, and needed out. He said I could have the house and the kids as long as I didn't contest the divorce. And he came the next day, had all of his things in garbage bags and left me. My world was shattered. I hadn't ever managed a bank account, or really paid a bill. My best friend and first love was no longer my friend and lover.

My illness was exceedingly exacerbated by the stress of the situation. I stopped moving, stopped eating, except for the occasional bowl of "comfort me" ice cream. I cried myself to sleep everynight while holding our wedding picture. During the day I was like the crazy lady with the fake smile so my girls would think daddy's just permanantly at work, but the minute they napped or went down for the night, I was a mess. I gave it a couple of weeks.

Then much like before, I dug deep down for the strength and the grace, I started moving again, started eating again. And now I am back to fighting shape. If anything the past 8 months have taught me such a huge lesson in the capability of the human will. I had no clue I was so strong, I've always knew I wanted to be a good role model for my girls, but I thought it would be because of my joy, morals, respect. Once I found out I was going to have a baby girl, I had to shed that "bad body" image. I told myself I was beautiful everyday. My body shape is genetic, so in case my girls were mirror images of me I wanted it to be a positive reflection. Now in so many ways it will be. I am going to be the best role model I can be, and now I've learned I am my own role model. I've really impressed myself in this last year. I had no idea I had it in me. I've always been the "osterich" in life, just tuck my head in the sand when things get too serious or complicated. But not anymore. I am finally able to handle things as they come and with the maturity, positivity and quickness they need. Now I am not only someone my girls can be proud of, but for the first time, I think I am someone I can be proud of.

Thankyou so much for your time and consideration of my story.

Sincerely, Chrissie Patel
Centerville, MN

A Friend with Benefits

No worries, I haven't rebounded that quick. But what I am referring to is a good friend of mine Kelly. I was thinking alot about her this weekend and realizing what a pivotal role she has played not just in my life but within this entire situation as a whole. I consider her a friend with benefits because not only does she have all of the necessary qualities of a best friend but she has gone above and beyond in the last 2 years.
Kel and I could not be more opposite in most areas of life. She is a very responsible, mature person. She is a planner, she is organized, a neat freak (OCD by her own admission), she sees 5 steps ahead in every situation and plans accordingly. I on the other hand am uber-laid back, spontaneous almost to a fault, an extreme goof ball, definately a free spirit. We've gotten into many discussions, debates, and sometimes arguments about our views on life, but the bottom line is that she accepts me for who I am and vice-versa. In the last 7 months as my life has taken an extreme down turn and all has been tested, she has stepped up in ways that are crazy to me. She is one of those "no matter what" types. Just like me.

I've realized that we have many similarities and some probably are a product of us rubbing off on eachother. But the benefit to Kelly and my friendship as it applies to my health and life right now is that she is constantly there for me as I try to be for her. And I know that for sure I couldn't have gotten through this with the strength, courage and dignity that I have if it wasn't for her. We talk probably a good 4 or 5 times a day and our first conversation is first thing in the morning when my pain and nausea is sometimes at it's worst. She knows exactly how to handle it and to get me on the right path for my day. She is almost an intrigal part of my stability right now. And I know most would say that well its easy for her, she doesn't work, she's a stay at home mom. Well I suppose technically that's true except for the major factor that our job is 24/7, stressful, draining, and keeps us on the tips of our toes. Plus I have helpers and she is just on her own. Our husbands both work constantly and she has a 3 and 6 year old. Not to mention she has to be the busiest person I know. There are some days talking to her and hearing her "to-do" list for the day is enough to make me want a nap. She'll notice grass on her floors and want them scrubbed, she is an artist and paints beautiful things so she constantly has many projects awaiting her attention. To top it all of, she probably has the most spotless house I've ever heard of, her kids are bathed all the time, she works out everyday and can take multiple showers. I envy her energy, her drive, responsibility, creativity, parenting, sex drive, her inner drill sergeant, eagerness, but most of all her heart. She has enough love for me and my children to include us in her everyday life. She constantly is giving me advice on how to help my girls, maintain the house, and to be a good family member. And the most amazing part of what makes her so special is that when she comes in to town to visit her family which keeps her so busy, she always makes time for the girls and I. She doesn't just stop by for a visit, she helps me organize, clean, she works to improve my life. There are so many benefits to my friend that it would be impossible to list them all. She can be 5 places at once and can do it with grace and unfortunately the occasional migraine. She strives to make others lives better and I mean everyone. Not just me and the girls, but she puts her husbands, childrens, and family's needs above her own. I know that is one of our similarities. We joke about it quite often.
That is another pivotal need for my life that she fufills effortless for me....laughter. She can find the humor in most anything, God bless her. Me, personally I would rather laugh and make a joke than take things too seriously and she can do that as well :)

And now my gratitude for Kelly is exacurbated because of what she did for me, pertaining to Lydia. When Kelly's daughter Natalie was born 3 years ago, she was born almost 5 months premature. I believe she was the 2nd earliest baby born that survived. Kelly's strenghth, courage and grace taught me that we can handle anything because of our faith. Well Natalie qualified for a host of programs because of her premie status and one of those was the Birth-3 program. About 7 months or so ago when I started noticing that Lydia was acting a little more strangely than uber-independent (and what couldn't be explained by genetics, lol) Kelly convinced me to have her evaluated by the Birth-3 program. For that I will be forever grateful. Not only did she handle me with kit gloves during the process, knowing I would inevitably internalize everything and blame myself, she talked me through it, calmed me down and helped me approach it in a healthy manner.

So bottom line in the last 13 years our friendship has pretty much seen it all. But our friendship is like fine wine, it does only improve with age. Although she's fancy wine and I am a good stiff drink. But the bottom line is at the end, both gets you to your "happy place". Just where our friendship gets me. So thankyou Kelly for being my friend with benefits. I love you so much honey. I only hope I am able to do half of the things you do for me. You have shown me how to be a better friend, and for that...I thank you :)

Your "other" half,
Chrissie :)

A shot to the heart; and who's to blame?

Well, it's offical after all of this time, after all of the prayers begging for it not to happen or be true, it's happened. There has been a death. I've been mentally preparing for my own demise, or my fathers, a grandparent, or the possiblilty of a cat. But no one could of ever prepared me for this, possibly the greatest loss of all; my marriage. After 8 years together, 5 of them married, I can no longer say that I am his or that he is mine. RSD has officially robbed me of my greatest asset, my husband. He left us almost 3 weeks ago and the emptiness is overwhelming. I've never pondered life without him really. I am sure there were times after a fight or worrying about him getting in an accident or following in his father's footsteps and dying young from a heart attack. But to truly sit back and imagine my life without my partner and my best friend was unfathomable. I worried that my illness and all of the stress in our life right now may be too much for him, but he promised he'd never leave my side. In fact he made me promise that I wouldn't die, that I would fight for my health. So I feel cheated, like I stood up, I fought, I fought for our kids, our life, I fought for you. So now all I can wonder is why the girls and I weren't worth his fight.

The easy thing to do in this situation would be to be pissed as hell, cry to everyone I know about how shitty life was with him. But even though with all of the obvious valleys, the peaks were just to great to forget. He's my first love and I always knew he'd be my last and still after 3 weeks I can't picture that changing. He vows it wasn't me, that I was a great wife and a wonderful mother. He says it was all just too much. The illness, Lydia's autism, financial woes, lack of sleep, and abundance of resposibility. That even though I had been feeling better, the fact that my illness truly exsists, I think was the breaking point.

Now with the current sense of abandonment and sadness, I have to be at my greatest. My experience with men has been a sea of abandonment and sadness, so I need to prevent that for my girls. They need me. I need to buck up and manage finances and a household on my own. And prove for the first time a sense of "female empowerment." Trust me I've always been the opposite, I've longed for the simpler days, the days with defined roles between man and women. And now those lines are blurred. I am not only the woman of the house, but the man too. I wouldn't know how to change a lightbulb if a man didn't show me, although that was one area of expertise Chintan did not excel in. So maybe HGTV and the DIY networks need to become my new bestfriend, so I can eventually learn the meaning of true independence.

Life has been a bit of a balancing act, my RSD is back full fledge and with a vengence and I am still choosing to be on very limited meds. The dr.s are a bit worried about it considering my pain levels are still extremely high, but what I know for sure is that it is a state of mind and distraction is key. Luckily I still do have some great helpers and a definate bonus to being a single disabled stay at home mom is that Lydia now qualifies for a host of programs, grants, and disability that she wouldn't of had had we figured Chintan's income into the picture. I now am on MA with the girls too, so that 's a blessing in disguise. And as comforting as knowing that I have that cushion of financial help in the medical arena, it doesn't help that I don't have that emotional cushion that he would have given me if he were here. The thought of having to go to Mayo for "who knows how long" by myself is depressing. Having a hand to hold and a hug everyday, as simple as it may seem, was in itself worth all of the other troubles.

All I know is that in a year or two once I've figured out yet another new existance, I want to be able to look back and tell my girls that I handled this with maturity, dignity, and respect. I miss him very much, but the bottom line is that I am dissapointed in him. I have the courage and strength to stay and fight in my fragile condition, and he couldn't. I don't deserve that. Bottom line is that if that is the man he truly is, then I am better off on my own. Let's just hope that I can be double the man he was, and it's not looking like an unattainable goal.
Peace, love and happiness to you all!!

Chrissie

The Withdrawl Dance

My thoughts through all of this in the past week have been running rampant. And I've found out a funny thing about will. Not only that I have it, but that it truly is a state of mind. I've always admired people with strong wills. I never thought I had it, mainly because my mind is usually my worst enemy. When I know I can't do something, that is usually when I want it the most. But throughout this past week, that whole process has completely flipped, and I apologize for sounding crass, but it's been a mind-f**k. I've realized when it comes to the meds I am on, it's not about your minds will or your hearts, it's about your body's. I have no desire to take any of these meds at all, in fact the thought of having to makes me sick. But my body is so used to them now it is sending me signals that I have no idea what is fact and what is fiction. I still haven't spoken to my dr. about my decisions to withdraw from their "prescribed plan". Mainly because I am worried they'll try to convince to go back on. I am being more responsible about taking myself off the meds now. I've gone down to only 2 meds and am weaning off appropriately. But I desperately want to know what my body is actually telling me. I still have a lot of nerve stuff going on. I am still not sure if that is a withdraw symptom or actually a chronic problem with my central nervous system. The pain has decreased quite a bit, but surprisingly has localized mainly in my upper body. I experience quite a bit of nausea, but am able to eat and use the restroom normally. I slept very well for about 4 nights and then last night was a bit rocky. I awoke to quite a bit of pain in my legs, hips, joints, and low back. That was very discouraging. And I am also seeing my allodynia returning. Clothing is becoming difficult to wear again, wind or air hurts my skin, to firm of a touch definately isn't pleasant. So I just am not sure what my body is telling me. So therefore it's will is out of control.
But I am in control of my mind and heart and I will not give up. I've been praying very hard everyday for the strength to get through eachday. I awake and ask God to give me the grace to get through the day, so I am able to take things one day at a time. I am trying not let my mind win, to place blame, or to hold grudges. I do realize that if I do get better that God will reward me. I will get credit for time served if you will. I will be enriched. Nothing he does is in vain, his plan isn't without intricate thought. So there is a purpose for the past 7 months and for the future, and I trust that he knows best. I know I will get discouraged, that's human. I may question, that's human. But I will trust, and that's christian.
I am just praying so hard that the withrawl dance will soon end. That soon I will know what I am really feeling. What is fact. I don't know how long it will last because I think my body is still just getting used to being on the small amount of meds I am giving it. Ideally I'd like to decrease every week, but I have to listen to what my body says. And I hate that, because my heart and head say no more, but I don't want to do permanent damage to my body if I put it into shock.
I am getting there. I've been out of bed almost the whole week. I've been spending everyday with the girls, been able to pick up around the house, feed the kids, get the ready for their days, and even let Chintan get a little sleep! Slowly but surely I am returning, I don't know what condition I am coming back in, except for one thing....I am coming back in fighting condition. So what ever is left and whatever Mayo finds I'll be strong enough to fight back. (Enter Rocky Theme Song now....) Hee Hee :)

Who knew the miracle worker here...could be me?

This week has been a very weird week. It started earlier in the week when I glanced over to my dresser and noticed probably 10 or 15 pill bottles. Just tons and tons of pills, most for pain, some for depression, anxiety, muscles spasms, inflammation, vitamins, etc. And then I thought about everything that the dr.s have been saying lately and then I thought...that's it...I'm done. I am not going to do this anymore.

Now this part may seem quite controversial to some of you, but this blog is about brutal honesty so here I go. I took inventory of my meds and then immediately stopped taking them. I thought, no all of these meds can't be good. All of the side effects, the long term effects, addiction prospects, no. I will not live this way anymore. So from monday night until I think it was wednesday I made it without a pain pill. But the weird thing was except for pain I felt pretty decent. I had some nausea which caused some vomiting. But hardly any bone pain, joint pain, muscle aches. Just nerves...lots and lots of zapping. Then on Friday a thunderstorm hit. And all of a sudden the pain was so overwhelming and the electricity of nerve pain in my body was so overwhelming all I could do was ball and ball and ball. My mom talked me through the worst of it and just kept comforting me and telling me to stay strong, it's best not to be on all the meds. She kept telling me she was so proud of me and I didn't understand. But she explained that I was taking over my destiny, my body, my health. All of a sudden I was pretty proud too.
Then this morning (Saturday) came, I finally slept last night after 2 nights of no sleep at all. But I woke up with an overwhelming zapping feeling through my arms, hands, face, and mouth. I tried to stay strong most of the morning. But eventually I called the dr. I didn't want to because I knew they wouldn't support my going cold turkey off the meds. They explained about withdrawl symptoms and they thought that was what was going on.
So here's the thing with how I was feeling this morning. Not a lot of pain, no nausea, alert, just zapping. The dr. convinced me to take a dose of my cymbalta to start weaning off the appropriate way. So I sadly agreed, but I was scared of what would happen if I didn't.
Within about an hour the zapping stopped, but....with that, the feeling of "RSD" rushed over my body. The pain, the nausea, the hot/cold flashes, the color changes, sensitivity of touch, etc.
I decided to call a pharmacist and talked to her about reactions to cymbalta vs. symptoms of RSD. And she said it's the same.
I am trying so hard not to get my hopes up, but I am praying that this may be the answer to my prayers. Could this be a drug reaction?

All I know is that I am almost on the path to find out. The pain center is sending me to Mayo for a complete investigation. I am nervous and excited all in the same. Dr. Hess is writing a letter for me to go down there, thank God!!!

Dancing on tip-toes

Well so far this week has been so-so. My meds were just upped, so usually that means that my pain levels on average are reduced for a couple of weeks. Today though I am trapped in bed by spasms, exhaustion, and weakness. My eyeballs feel like they have weights on them. I am sure I am feeling crummy all of the time due to stress. The good ole' stress monster that attempts to rule and screw up my life. Yet again personal relationships aren't perfect. Which is so hard because I have a hard time giving the people in my life a whole lot of compassion, and whats ironic, is that that is one thing that I want from my family and friends. I am having difficulty understanding why people have such huge expectations for me. It takes so much of me just to function with my high pain levels and my constant nausea. There are so many side effects to my illness and my meds so even though the pain is so excruciating, it is just the tip of the iceberg when it comes to my daily stresses. My body feels like it's been literally beaten up daily, hourly, even some days by the minute. I struggle just to maintain a smile, to laugh, to see things optimistically, to have even one positive mantra. So when others expect me to do more, the extra mile, I get so frustrated. Alot of my illness can be controlled (good or bad) by stress levels. I know that I am not by any means perfect and neither is Chintan or my kids, but right now we are by far not living, we are just surviving. Our house isn't immaculate, the kids don't always look perfect, I rarely wear makeup or get in the shower (I know that it's gross but this blog is about my reality and showering is extremely painful, so I sponge bathe a lot.) Most of the things in our life are put on the back burner, because priorities are re-adjusted not because of what's important in that week or month but because of what's important in that minute. We have very little help, it's mainly Chintan, me, my cousin and my mom. And I do understand that, people are very busy and just because I am terminally ill does not mean that people's lives have to stop, but because I need to be realistic about that others need to be realistic when it comes to expectations for us. I don't want nor do I expect others to tip-toe around me, but I can't do it for others. Life has become extremely honest and up-front for us, very "in your face". Trust me a lot of this I'd rather be in the dark with most of this stuff, but it just can't be. Patients, compassion, and understanding needs to be a must right now. We have a lot of big decisions to make right now, we need alot of things that just aren't possible, and we can't accomplish everything that is in front of us right now. I also do know that as adults there are certain things that we can't just ignore, we still have a responsibility to life that we just can't get out of. Just because I am ill, Chintan works 80+ hours a week, Lydia has autism doesn't mean we are excused from life's necessities. But is it easier to just put things on the back burner when we are overwhelmed, to just lay on the couch when things seem too crazy? Absolutely. I think in some ways that is human nature. Not to mention the fact that Chintan and I have always been laid back, chill type people. We are definitely not the "serious" type. And now that life has taken this unexpected turn, I think it's our defense mechanism just to stick or heads in the sand. Is it right? Is it the "adult thing to do? Is it responsible? Heck no! I am not proud of it, nor is Chintan. It causes a lot of tension in our relationship. But he is stressed to the max, exhausted, and feels pushed up against the wall and I am in constant excruciating pain that has taken everything away from me. So therefore we will make mistakes, we will do the wrong thing, we will be irresponsible. To be honest it's just hard enough to be good parents right now. And we both focus so much of our energy on parenting responsibilities that adult, marriage, friend, family responsibilities fall to the wayside. I know I don't feel good about it, but I am so tired and so overwhelmed that sometimes I just don't care. Now that I am terminal honestly I just want to be around people that offer something positive to my life. Whether it be a good joke, a funny story, a life lesson, or comforting shoulder. So bottom line of today's blog: I know we are not functioning at a high level, I don't want people to tip-toe around us, but I would appreciate some slack. And if we are driving you nuts because we aren't living life to your standards then just either keep it to yourself or cut ties. Because right now we are looking for support, love, friendship, compassion, and understanding. To all of you out there reading this we will continue to do things that piss you off, make you scratch your head, or disappoint you, but honestly none of it is intentional. I love everybody very much and appreciate all of the prayers and love out there and I would never intentionally hurt a soul. So search your heart for some compassion. Because I promise if roles were reversed or even if not and one of you needed a friend, I would be there. On both sturdy flat feet, with wide arms, and an open heart.
Love you all and thank you again!!
Chrissie

Life...uncensored...

For the first time in this blog I don't know what to say. I know I need a release, I've been encouraged to use this blog as my outlet. My world has definitely shifted, my reality has been realized, and my strength has been tested. For the last 2 weeks I have been so sick, the pain has been outrageous, to the point where I didn't know if I could go on. And all the while as my body is attacking me I am taking care of these two little miracles. I just love to look and observe Lydia, her autism intrigues me. I wonder what her world is like and I find major comfort that through all of this that world is a happy place. She is so bubbly and happy all the time. My little Lucy, now she is the exact opposite of Lydia. Obviously it's because of the autism, I get it! But she is so vocal...mama this....dada that.....I think it's great. She wants me all the time and cries constantly when I can't pick her up. Let me be honest, when my girls are happy and vocal, singing songs, cooing, or just shouting words...I want to run away and hide. Most of the time I have to plug my ears. It's like nails on a chalk board to me. What kind of a mother am I? When holding my children is torture, listening to them is annoying and looking at them is depressing. Don't get me wrong I love my babies, but this disease has robbed me of my entire life, all of my joy, and now it's attacking my spirit. The one thing I swore it couldn't have.
The dr.s are now talking about a fatal form of Lupus. They seem pretty sure that that is my new reality. I am trying not to think about it. I am not googling it like I did the RSD because I don't want to get to freaked out. But the drs. already keep mentioning my demise. I am not ready to hear that I could die. I just want to know that my babies are going to be okay. I want my dreams back. Chintan keeps mentioning that a year ago we had it made. He still worked a lot but I was the epitome of a stay at home mom. I loved it, we had a great time Lydia and I and then when my little Lucy was born...my heart must have grown to make room.
Well now we need to decide who will have partial custody after I die...what a decision. It's so hard. I wanted them to go to one of my besties Heather, but she bravely declined and I understood completely. I just want to scream in frustration, not because of this kids, but because why me? What did I ever do? Yeah I am not perfect, but seriously, 3 diseases at once, while having 2 small children, one of them being autistic. Yeah I am being selfish right now so I can get it out! Because all day everyday I think about the people who have it much worse. But I need to scream and get it out, but I can't it will scare the babies. So I'll scream here; What the Fuck????? Why????? You promised you'd never give more than one can handle...well I am broken!!! I am done!!!!!!! Do you hear me???????????? I am balling my eyes out right now and can barely type, but I know you can see me!!!! Where's the comfort??????????? I know the dr.s have to be honest, I know they have to be blunt, but where is the compassion? I am going to keep believing and trusting in you. You've never failed me before, every time I am in a rut you show me the way out. I've been low before but never this low. Please give me the peace of mind that if I go I won't be in pain anymore, I'll have comfort. Because right now even though they said it's a probability, I still see no way out of this pain. I suppose living with RSD, Fibro, and Lupus for the rest of my life, will be better than dying. Even though the pain is absolutely excruciating at least I am with my babies. So as mad as I am and as broken as I am, I choose life! I am sorry but you can't have me, I am not ready!!! My girls need me! No body will ever kiss and hug them as much as I do, nobody will ever admire and love them as much as me!

This is the most morbid freaking blog, and I am sorry. But I need an outlet. I promise I'll lighten it up soon. I am just very frustrated and angry. I do still have happy moments there are people that can give me a giggle. I do spend day after day in the positive, I just needed to vent.
Again, I am sorry. But I do hope this finds you all well.

Hugs and kisses, Chrissie

My special girl

My Lydia has always been my special girl. Her nickname is "Dia" which means the light in hindi. And she so is. I've always admired her independence and self-confidence. She is so strong, bright, caring, and funny. I've definately always thought she was "special". Well today we found out that she is extraordinarily special. My baby has autism. The evaluator that came today has been researching, studying and working with autism for over 20 years. She was very informative and really brought Lydia's truth to light. Her autism effects her social, problem solving, and verbal skills. They talked a lot today about Lydia's world and how it takes a lot to enter it. I have always tried to force my way in, trying to play with her, talk to her, read to her, snuggle her. But it's usually a rarity and always on her terms. I think what breaks my heart the most that as her mother I want to be completely infiltrated in her world, but she doesn't know how to let me in. And also she can't tell me what she needs or wants. She can't really verbalize it and she doesn't know how to gesture for it. Her autism affects her problem solving skills to the point where she doesn't know to reach out to me for help, she feels the need to figure everything out on her own. So she grows frustrated very easily when she can't. Lydia also is hesitant to associate with anyone she can't "figure out". That is why Lucy is pretty much a ghost to her and she wants nothing to do with animals. For her they are all too unpredictable.



I was offered two different programs for her. An autism based program and developmental delay program. The evaluator said most parents who find out their toddlers have autism, they choose the developmental delay program because it is more vague and some of the parents just arn't ready to accept the diagnosis and don't want to deal with it at such a young age. So they'd rather their child be in the delay program and revisit the autism diagnosis after a few years of being worked with in all areas. The autism program is more focused on specific areas of delay due to autsim specifically. And when she is 3 after a year of one-on-one therapies she'd go to a special needs preschool program. So after being told the pros and cons of both, I decided on the autism program. I figure I can't just go about pretending that this isn't part of her. So I am embracing this head on and I want it handled immediately. I figure much like my illness early detection and treatment could only be the most beneficial. Not to mention, I am very much about raising little individuals. There is no "norm" for how I want my girls raised. I want to embrace and support all aspects of them while offering moral guidelines and values. So I choose to love her because of this and not in-spite of this. Autism is a hard pill to swallow but this is part of who she is, and that's okay. I am sure that she will overcome the hardships associated with it and become the bright, creative, expressive child that I know and love. Her differences will enhance her life not hinder it. I will keep everyone updated as therapies progress. And I do believe in trusting this program and I believe that they have her best interests at heart. I am not much one to go with eastern medicine, I am an "all american" type and trust in her doctors and therapists. I know some people feel differently and that's okay. But I am hoping people let me do what I feel is best for my daughter, I am her mother and I will follow my instincts. It's been a long stressful week with Lydia's diagnosis and mine as well. I need to just stay focused on her development and not get too stressed out. Because if I get increasingly worse what good am I gonna be to my girls?



So as I mentioned a bit ago Dr. Hess met with me this week to go over my test results and went over my treatment plans. He is going to move forward with treating me for a severe case of Fibro and RSD. Right now he adjusted my meds again and we are going to see how I respond to these. He also said what I do at home is just as important as the meds. So I need to rest as much as possible and try to find comfort as much as possible, but I need to still be moving. And that's why he wan'ts me to find comfort as much as possible. I have been spending a lot of time in bed when I am not taking care of the girls. I need to find some relief. I can no longer go to water therapy because I don't have a ride. (I still can't drive obviously). The other very imperative thing to my treatment is my stress levels. RSd is so exacerbated by stress and emotions that I need to constantly keep things in check. And I am a worry wart by nature and Dr. hess said I am naturally going to be in a lot of physical stress just due to high pain levels and being so sick. So I need to try not to add to it. Even if I start crying a little bit, the pain is instantly heightened, which usually makes me want to cry more. So I need to keep all of these things in mind as I go about life as usual.

So bottom line is we still need prayers and continued support. And I want to thank all of you that have been so wonderful during this difficult time. It's nice to know that there are some people out there that just have your back no matter what during a time where insecurity breeds second guessing and constant stress. So, I hope everyone is doing well and keeping warm. Much love and soft hugs!!!

Chrissie

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 :)

What's up with chuck?

I know the title of this blog is a little confusing, but I didn't want to title it "What's up with my puking 3 times a day?", LOL!! I didn't want to scare people off, ha ha! Now, vomiting isn't necessarily a symptom of RSD as far as I know, but it can happen due to high pain levels and high stress levels. I've been experiencing a lot of digestive issues as far as appetite loss, abdominal cramping, nausea, and tushie issues (I'll leave it at that!).

I've lost almost 80 pounds this year and that's with Lucy's pregnancy. Normal women gain 30 pounds during pregnancy and I lost that. But she still came out with a very healthy weight of 7 pounds 9 oz. As of January I've lost another 40 lbs which is when RSD starting effecting me. My body has changed so much with all of this weight loss. I've gone down over 4 pant sizes. There are quite a few people in my life that are so excited about my new figure. And they are wondering why I am not. I think it's because I didn't go on some new fad diet and I didn't start exercising 5 days a week. I lost all of this weight due to excruciating pain. Pain that makes it so I have no desire to eat. I have to force feed myself a granola bar or a piece of string cheese before I take my meds in the morning. Even drinking water can send me into a fit of vomiting. It's gotten to the point where I have to carry "puke bags" in my pockets or in my purse, because of the instantaneous need to well, puke.

My body is also changing so much to the point where I can feel bones that I quite frankly didn't know existed. It's so weird to touch the side of my torso and feel my rib cage or put my hands on my hips and have them actually be on my hips. Usually my hands were on my love handles, lol. But as I have navigated my new body I've found some new discoveries besides bones. I've found lumps. One lump at the bottom of my rib cage, 2 lumps underneath my knee and a very large baseball size lump at the base of my neck.

The skin on my hands are peeling off in sheets as well and I am still experiencing a lot of what they call "allodynia" which is extreme sensitivity to touch. I try to hold out the majority of my pain tolerance for my kids. What I mean by that is that it hurts so bad to be touched so when I know it's time to do something with the kids, I let them touch me, grab me, hold on to me, kiss me, whatever they want and I just grin and bare it. But I only have so many of those moments before the pain becomes overwhelming.

So I go to see Dr. Hess again tomorrow to figure out if there is something else going on that is also adding on a plethora of illnesses. I plan on talking to him about all of the above. I am hoping this time he hears me a little more clearly because last time, I felt that he was going so fast and being such a goofball (which a big part of me, I did enjoy!). But I want to be heard, this is my life, this is my future. And all of these new symptoms are very scary. So please pray for me that Dr. Hess will be very understanding and open to listening to me tomorrow.

Hope you all are well!

Love and Hugs,

Chrissie

The Letter to Normals

This is a letter I found on the internet (auther unknown), but I edited it from my perspective:

Hello family, friends, and anyone wishing to know me,

Allow me to begin by thanking you for taking the time of your day to spend time reading my blogs and getting to know the "new" me better. A person's time is their most valuable asset and yours is appreciated. I want to talk to you about RSD and other chronic pain disorders. Many have never heard of these conditions and for those that have, many are misinformed. And because of this, judgements are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am now and how RSD has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who's attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you won't see my scars as you would a person who, say, had suffered a car accident. You won't see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain could be more destructive because people can't see it and do not understand...

Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough, I assure you. My tears are shed many times when no one is around and usually only when I am at my limit. My embarrassment is covered by a joke or laughter, but inside I want to cry....

Most of my "friends" are gone; members of my family are starting to tire and I fear they too will abandon me. My illness has been questioned. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning pain in my arms and legs, so intense that I can't put my clothes on and I am left in tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. I may not remember what i promised to do for you, even though you told me just seconds ago. I do not have selective memory. On some days, I just don't have any short-term memory at all. As I try to maintain my dignity the demon assaults me at every turn, please try to understand....

Sleep, when I do get some, is restless and I wake often because of the pain the sheets cause to my skin or because I twitch uncontrollably.

And just because I can do a thing one day, that doesn't mean I will be able to do the same thing the next day or next week. I may be able to take my kids to the park on a sunny day; the next hour I may not be able to walk to the fridge to get a diet pepsi because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say "but you did that yesterday!" "What is your problem today?" The hurt I experience at those words scars me so deeply because I fear I have let my family down again; and still they don't understand.....

On a brighter note I want yo to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another's face light up and smile at my wit. I love my babies and shine when they give me hugs or greet me with their infectious smiles. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you guys and want nothing more than to be part of your life. And I have found that I can be a strong friend in many ways. I am your friend, your cheerleader and many times I will be the one to make sure you have the appropriate gifts on farmville or make sure to reach out when you are having a rough day. Many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, goals...and also this demon...Do you have an unseen demon that assaults you that no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, I promise you that. I will not let you suffer alone. I will be there in ways that I can and probably ways I shouldn't. I will give all I can as I can. I promise you that. But I do have to do this thing my way. Please understand that I am in such a fight myself and I know that their is little hope of a cure or effective treatments, at least right now. But I will hold on tight to that little bit of hope, I will hold on like hell. Please understand...that I am just like you...Please understand.....

The Great Escape

Well it finally happened, I knew it was gonna happen eventually. I am only human and can only take so much. I've been like a ticking time bomb, and I finally exploded. The only way I can explain it to help people to understand from an RSD standpoint, is that one thing you experience with your sympathetic nerve, is a "fight or flight" sensation and also explosive amounts of adrenaline. Well the combo hit together at once on Saturday and I couldn't handle my surroundings and I ran. I got into my car and started driving. And once I did I realized, I have no place to go. Driving was hell, very painful to my legs and they started to go numb, so I needed many breaks. I know I am not supposed to drive, I know it puts myself and others at risk, I do know this....now. But not in the moment, there was no logic, no reasoning, no real explanation.

So as I was driving I started to panic because I knew I needed to take a break as I was balling heading down the road. I couldn't find a single empty parking lot anywhere. I wanted to find a peaceful park or a place by a lake. But they were all crowded with people. So I found an empty church parking lot, I pulled in and started balling. I did call my mom to let her know because she was planning on being back to the house at 5 to relieve Chintan so he could go to work.

What I ended up doing was driving to see a friend of mine that I've worked with at a salon for a couple of years (when I could work, that is). I was going through a major heat wave and still going on adrenaline, I had her shave my head. I had her get out the clippers, put on a #6 and go to town. I had my haircut 2 weeks ago and it had already grown well over 2 inches. I wanted it gone. So she calmly obliged and when she was done had me sit in the backroom with an US weekly (one of my dirty little obsessions that she knows all about from work, lol). She was about to close and then took me over to Target because I was in no position to go home. She pushed me around in a wheelchair while we shopped and talked and helped me to calm down.

Usually my "fight or flight" attacks only last between 10 and 30 minutes. But I couldn't escape it, probably because it was mixed with so much adrenaline. I knew by driving and going to Target I was risking people thinking "she's not that sick, she can drive, she can shop" and I was right. I need to reiterate that with pain disorders a harmful assumtion like this can really hurt someones feelings. Just cause I can do something one day, DOES NOT mean I will be able to do it the next. And in this situation, I wasn't driving and shopping because I felt good, it was pure adrenaline that was keeping me going. Adrenaline, anger, frustration, sadness, etc. But in no way was it because I was having a good pain day. In fact the stress from the past week has gotten me so sick that I've been having non-stop migraines, throwing up constantly, insomnia, and horrific pain. I know in my head that "to just get over it" would be a wonderful idea, but when you are dealing with the amounts of pain I deal with on a daily basis, your thought process is completely screwed up. RSD is in the brain, it effects everything. Logic, reasoning, emotions, stress, thoughts, pain, mobility, everything. And I know now why my dr. is very passionate about me not stressing, because this is what can happen. Now I know that it is a very rude assumption to ask the people in my world to try not to stress me out. They all have their own worlds and lives and I would never want anyone to tip toe around me. I WANT so desperately to be normal and to be treated as such.

I know that running away wasn't a good idea, but like I said, I am human. I can only take so much. I am so busy fighting for my rights as a mother and a human that I have nothing left for RSD. My mind is wrapped so heavily around the state of guilt I constantly am in, I have a hard time expressing my feelings and wants. Well this week was horrible because I am starting to always express my feelings. My "happy face" has left the building. I was raised to shove and bury my feelings and put on my happy face all the time. Don't say a thing, it could hurt someones feelings. And as wrong as that may sound to some people, I miss those days. I miss my happy face.

On Friday I go see the pain psychologist, thank God. I know my mom and husband are ready for this as my depression starts to rear it's ugly head and I start to not be able to control what comes out of my mouth. They want to old Chrissie back the one that smiles and says "whatever". The laid back Chrissie that could be talked into everything, she was so much easier to deal with. I covered everything with a joke or a smile. I miss that girl and want her back. My relationships were so much easier, I wasn't a burden then because nobody had to "deal" with me. Hopefully the psychologist can help me find her again. I want 90% of her back, I need 10% of this Chrissie so I can stick up for my time with my kids. But other than that I want to go back to caring about everything and everybody else. I want to be the caregiver, not the caretaker. So hopefully in a weeks time she'll be back. Hopefully in a week I'll have the strength to just sit back and enjoy the ride. In the passenger seat where I've always done best with.

Man, I'm gonna need more than an hour with this guy, lol!!

Lots of love and hugs,

Chrissie

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