In the Beginning

I decided to start this blog to have a space to voice my experiences living with a mystery autoimmune disorder and raising a child with Asperger’s Syndrome, Obsessive Compulsive Disorder, Attention Deficit Disorder – Combined, and Separation Anxiety Disorder. Mostly this will be a space where I can put to words all the thoughts, feelings, and emotions that I experience just trying to live one day at a time. I want other mothers to know they are not alone and I hope I can bring them some sense of peace, laughter, and the occasional AHA moment where they can say “Yes! I feel that way too! I’m so glad someone put that to words.” I have been struggling way too long trying to do this alone and it is time for me to share my journey with all of you and bring MYSELF some peace and laughter too!

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3 Responses to In the Beginning

  1. DisabledMe says:

    I also have fibromyalgia, but no children. I can’t imagine what you’re going through – I often wonder how/if I’ll be able to have children given the fact that I can barely take care of myself. I struggle on a daily basis trying to get my own mother to understand what it means to have a child with a disability (since I was only diagnosed a few years ago) and it’s a constant struggle. Stay strong and stay healthy! Good luck.

  2. Dawn Herring says:

    Sarah,
    This is a brilliant idea! I will be eager to read your posts and share them with others.

    Be refreshed,
    Dawn

  3. Susan says:

    Hi I am a 47 year old mother with a child with Aspergers, I was a retail pharmacist for 23 years and recently have had to go for disability. It is comforting to hear from another with this situation. I have a wonderfull supportive husband, and wonderful old friends who live about an hour away. I recently moved and am having trouble forming new meaningful friendships with women, because all the pain and the attention to my sons, older son is neurotypical (adopted from South Korea and is a great support) .I just dont have any energy left at the end of the day. I am going to join aspen for support. I realize what a stigma being in chronic pain is. As a pharmacist I often heard other pharmacist make derisive comments about anyone who takes narcotics. I had to switch my prescriptions to a private pharmacy. I have taken very low dose oxydondone over the past 4 years. I am also trying to get disability so I can concentrate on getting better,not just masking the symptoms. Over the weekend I took an art seminar with a neighbor, She saw me take medication in the middle of the day and remarked that she was “concerned about me” I had forgotten my dose and was in alot of pain and had to take a pill. I cant stand it! I tried to educate her about what I have to do to get thru the day so I can be a parent and maybe try to persue a hobby so I can relax. Needless to say I told my therapist and she suggested I need to broaden my horizons, (meet more people) and I agree with her. I also am facing unbelievable beuracracy from Cigna. I dont know anyone who would leave a prestigous job to fake being in pain. Prior to this I had never taken any narcotics in my life except a few days post surgical. I have tried every possible option. I just wanted to vent. I am seeing Dr Richard Podell , summit nj, He combines holistic and conventional medicine , which is I believe the only way I can improve and hopefully go back to work again. I was also recently diagnosed with adhd, which explains my difficulty i concentration. I believe there may be some kind of genetic link at play here. I know eventually the science will be there until then Godspeed everyone, you are not alone.

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