What a wonderful time we had together...but then comes flare that takes you down

On January 14th 2010, my husband and I took a bus trip to Disneyland with his company Safeway. For most people this would be a simple task, but for me it isnt. I had to make sure that I had everything that I needed for a short 1 day trip. That included my medications, clothes that would not cause me pain, and my wheel chair. This was going to be our first time in Disneyland without our kids. I just wanted to be happy and enjoy my time with my husband, but having the RSD and fibromyalgia wasnt going to make it easy. Being pushed around by my husband and having to be stared at and questioned because no one seems to understand why Im in a wheel chair because I look normal on the outside. We had a fantastic time together despite all that I was dealing with. By the time I got back home, that simple time with my husband that most people take for granted knocked me out. I spent the next three days in bed feeling like a Mack truck hit me and long painful sleepless nights. I can not wait for the day when I can get up and go do something and know I wont have to pay for it in the end.
.............. I greatly enjoyed my time with my wife even though it was a bit bittersweet. It was great to have those close moments with her in a place we love and I wish she didnt have this disease to hold her back. I know its hard to see her struggle with the looks and stares of stangers who wonder why she sits in a wheel chair when it appears she is healthy and normal. If only people knew what I know about her, and the pain she carries inside. I hope that one day the awareness and knowledge that people have of chronic pain conditions will give our society more of a heart of compassion and respect for those who silently suffer. I know it wasnt easy for her, but I appreciate her effort to spend a special night with me when she knew it would not be easy and at times painful. I love her for her spirit and strength, and will always cherish our time together. Its frustrating to see how one night can have such a drastic affect on her body. I try to support her as best I can but there is nothing I can do to stop her flare from getting worse. I feel bad as she struggles to get any sleep at night, and everything with her body seems out of wack. All I can do is enjoy the special moments we have in this life, and support her through the aftermath of her condition.

Gentle Hugz Rachel and Mike Silva

My Boyz

I have three wonderful boys who are my world,Michael Jr.13,Gregory 11 and Joshua 8.I am very blessed to have my boys,after my last son I had to have a complete hysterectomy at 26 years old.If I didn't have my three little oops as early as I did ,I wouldn't have them.God always knows what He is doing.My oldest son Michael Jr. fell 15 feet when he was 2 years old,it has affected him in life with learning disabililities.He is still a very loving and helpful son.He is talented in drawing,loves anything to do with sports.This year for him in school he has made many amazing improvments.I am very proud of him.I and his dad never allowed his disabililty to be a excuse for anything,always pushed him to the best he can be.My middle son Gregory has had his own health issues as a baby too.He was a premature baby,being 6 weeks early.When Gregory was 6 weeks old he stopped breathing in my husbands arms,thankful my husband quick respone to cpr on him,he still with us.That started a year and half of being sick and in out of the hostipal.He had RSV and other lung,ear infections.In total by the time Gregory was two he had over 50 ear infections.He is also a loving and caring child.He enjoys playing outside and doing anything with his dad.Gregory still gets sick pretty easily,last year he missed almost three months school due to mononucleosis.My last son Joshua aka small fry was also a premature baby.When he was 8 weeks old he developed a very high fever that wouldn't go down and end up in the hostipal.We then found out that he had spinal meningitis,he was in the hostipal for almost 2 months.Now he is a active and very funny kid.Joshua is a very socail always hanging out with his friends.He can throw a football like you couldn't belive for such a little guy, also talented in art too.Well thats a little bit about my boyz.
I am grateful for boyz,since I have been sick there life has changed so much.I am not as active as I was years ago.We all have had to find ways for me still to do stuff with my boyz,that doesn't drain my engery.They have had to adapt to life with a disabled mom.We can't do "all" the things that there other friends sometimes do.They also have to help out in our home probaly more then the average kid would have too.I am grateful that 90% of time they do it and understand why mom is bed or laying down.I and Mike have always been open with everything,never hiding anything and educating to the best we can.In a other blog,I am going to take the time to interview each one them,so that we can hear there perspective on having a disabled mom.When you are struck with a disabililty it effects the whole family in ways sometimes we don't even know.I hope my boyz thoughts will be able to help another family.
Much Love and Gentle Hugz Rachel

Sleepness Night 1

As I sit awake at 12:43 am , as do so many other suffers do at night. I think the night sometimes is the worse, the wanting to sleep, the pain and feeling so alone. Even though your family is the house with you and your husband is laying right next to you. I find myself in such a struggle sometimes as I lay awake...I usually have the t.v. on in our room or the computer on.I do this to help me not stay focused on the loneliness and pain.I just feel so awful knowing my husband is trying to sleep to get rest to go to work the next day.I lay their tossing and turning, flipping the pillow and moving blankets on and off just to try to find some comfortable postion to sleep in. As seconds turn to mintues and mintues turn to hours. As the tears roll down my face, as I scream into my pillow from pain and frustation. So many thoughts run through my mind , I rememeber going to bed at night with my husband and just him holding me in his arms and falling asleep and waking the same the way. Now on most nights the pain prevents him even touching me, just horrible feeling when you are laying next to one you love. I so long for the nights when he can hold me close. Thinking sometimes, God why me???...where did I go wrong in my life, but knowing deep down that is not the God we serve.Our God does not punish us in anyway.I will lay awake crying my soul to Him clinging to His word,He will not waste my hurt in anyway.I may not see it now, but someday I will. As we do lay awake at night hold on to the promise our Heavenly Father.Know that you are not alone, there are many of us out there suffering brought together by one common thread. I pray for all of us tonite...Our Heavenly Father come to at Your throne and ask for Your Healing Oil to placed on all of us from the top of our heads to the bottom of our feet.That You may hold us close tonite and all Your angels surrond us.That we may awake renewed and refreshed in Your Spirit.Despite all the pain and frustartion we feel we can take the burden to You and leave it at Your feet, and You will carry it for us.I thank you and praise You for all that You will do all of us tonite.Amen My Sweet Jesus.
By:Rachel Silva

A Husbands Perspective

I just thought it was important that our family have a voice too. This affects them in many ways like us, especially us who are married. I know for me, my husband has lost the woman I used to be. I know some days how tremendously hard it is on him. They take so much of the grunt of our pain and frustration we have because of our disease. I want to give my husband a voice today. Here are some of his thoughts: Some days are harder than others but there is one thing about this situation we are in that I can never change: I can't fix whats wrong with my wife. As men we always want to fix a problem or find a solution, but when it comes to a disease like chronic pain, there is no easy answer or 12 step process. I have become angry at times toward Rachel and even myself for not being the supportive and loving husband I'm supposed to be. I never knew how tested my marriage vows would become when I said the words" in sickness and in health". No man is ready to face a problem or a foe they cant defend themselves or their family from. Yet for the past 6 years I have watched my wife endure this horrible battle with a faceless enemy that has taken everything from her. As her husband, I wish I could save her from this pain and suffering she is in, but unfortunately I cant. I have learned that I need to only try to listen. Listen and try to understand how my wife is feeling from day to day, moment to moment. Just being there to hold her and support her in any way I can is the best thing I can do as her partner and protecter. There will be days when the weight of the burden that this illness brings upon a marriage will feel unbearable. There will be days when your frustration and anger and guilt will get the best of you. There will be days when maybe one more trip to the emergency room will break your patience and concern...But just remember as her husband..."Im not the one fighting this disease....Im not the one in constant pain" Renew your mind and your spirit each day, and ask God to give you what you need when you feel you have nothing left to give. Listen, learn, and pray. I can only hope that some day I live to see her fully healthy and happy again. If not in this lifetime, I with stick by her side until the end.
I just hope hearing from myself and my husband this can help at least one person.
Gentle hugz......Rachel and Mike Silva

I want give thanks to Cynthia for inspiring to start blogging. This will be place for all to get to know me and my crazy life.First of all I am Christan and devoted to Jesus with my whole heart,second I am wife to my husband Mike and third I am mom of three boyz. I have RSD(reflex sympathetic dystrophy) and Fibromyalgia.I was diagnosed with RSD almost 7 years ago and the fibro almost a year now.Here I will be blogging about many things in my life, educate people on chronic illness, praising Jesus and posting my poems and thoughts. I hope to bring people together and reach and give support to others who are silently suffering.Know one should have to deal with chronic pain alone.Thanks to Fb I no longer am alone in this battle.My hope,my strength I find in one place and that is My Savior Jesus Christ.
I live in Soquel, California and have my whole life.My boyz are Michael 13, Gregory 11, Joshua 8...these are my 3 reason to keep going everyday.I love my family,cooking and just started getting in mosaics recently and finding very good therapy for me.I been with my hubby since I was 16 and he is my best friend. On another blog I will tell you how we met, it is so funny.
It 11pm laying next my snoring hubby and coughing 8 yr.old trying to find a comfortable place in this bed...the joys of motherhood,but I do love it.
Much Love and Gentle Hugs Rachel