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
Thursday, July 22, 2010
Thursday, July 1, 2010
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 :)
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 :)
Saturday, June 26, 2010
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!!!
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!!!
Tuesday, June 8, 2010
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
Love you all and thank you again!!
Chrissie
Thursday, June 3, 2010
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
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
Friday, May 7, 2010
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
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
Tuesday, May 4, 2010
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 :)
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 :)
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