Originally Posted by stillsmiling

Hi everyone...... I've hit a rocky patch, and I would so appreciate ANY of your thoughts on the subject. Here goes.......I am the youngest of four children. (I'm 37) I am blessed to still have my aging parents here, and I am very close to them. I grew up in a very tight knit happy family. Late last night I received a phone call from my very best friend who is like a sibling to my own siblings, and certainly like a sister to me. She called out of love, crying to tell me my very persuasive attorney brother had called her to ask her what he could do for me.....he is a fast talker and he wants to fix everything he can. (He does have a huge heart.) He was all worked up in a tizzy about thinking I've been told so many things through the years that he was certain (Even though RSD has been confirmed by 6 different Dr's) there was another explanation...... Maybe this was all anxiety on my part. There were several more things he said that cut like a knife. He ended up the conversation with her by saying I just love her too much to sit by and watch this happen. They both ended up in tears. My brother and his wife have 5 children, He has an outrageous work load, he is very busy, and worries about everything constantly. I called him this morning and we talked for 3 hours. The first hour was him hollering nonsense. He was pulling at straws for this illness to not be real. I just had a feeling to let him get everything out. He said that he had held a family meeting with all of my family on Sunday to come up with a care plan for me.....but ended up angry with my parents who have accepted this disease, and felt like they had given up. He pulled out his checkbook and started saying. I will write out a check for any amount that can get rid of all of this. He came to the meeting with "evidence" that this is not really happening to me. That night apparently ended up with everyone in tears and feeling very frustrated. Getting back to our call. He yelled the first hour. The next hour I patiently explained this disease to him, but I got interrupted at every turn with him venting all of his frustrations. The last hour turned terribly sad......his hollering turned into tears and he said, "you are my baby sister, you are the Sunshine for our entire family, you have had a gift of being optimistic and seeing the good in every situation since you were a tiny little girl. I cannot sit by and watch this happen to you." He said, "I would lay down in front of a truck for you. I miss you terribly at every family dinner. That's why the entire family eats your little girl's Sunshine soul up because she is you. I'm angry with every Dr that has just put you on more and more medicines over the years, and you've only gotten worse. I want to help you!! I want this new Dr. to sit down with all of us and explain why this is taking you from us. I avoid your phone calls so much because I can't handle how it breaks my heart literally in half when you are down. I can't take all of the pain. I just can't handle it. I love you too much. You are Jenni. You are our little sister that we all love so much. You are gifted and talented. I miss hearing your laugh. We all miss you terribly when you are not with us.....I feel so confused and angry as to why some days you are yourself and others you can't move much less be apart of our family nights. We feel like you are too accepting and giving into this disease." I started to cry for a couple reasons. One was feeling grateful to have a brother (and sisters) that love me so fiercely, and the other is that they are hurting and grieving. He ended with saying I want to go to your next Doctor's appointment. I want to hear it from him, and if he does confirm that you do have RSD what we can do to stop it!!" This is the first time since my diagnosis of Full body RSD (14months ago, but I had developed it several years before, just not diagnosed) and more recently brain and eye involvement that he became just completely unglued and does not want to believe it. A question I have for all of you is this.....I have my 2nd appointment with my new Dr. coming up. My brother wants to cancel his work plans and go with my husband and I to that appointment so he can understand and come up with a plan with the Dr. to help me. I know his heart is in the right place and is very heavy, but I am fearful that he will say things like, "this is all in her head", or monopolize the conversation and not leave me with adequate time for my own concerns. I am overwhelmed with all of it. Do any of you have any thoughts on the matter? Thank you in advance. I feel defeated and overwhelmed.<br />
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