12-12-12 Project February Photo Collage

Collage of images taken at doctor appointment of me wearing a liver foundation support t-shirtHere, is a collage of pictures taken at one of my appointments this month. Being able to show support to another condition while still participating in my own health journey is really putting things into perspective!

Thank you Kristin at the San Diego Chapter of the American Liver Foundation. She sent me some fantastic Liver Foundation awareness shirts and a bracelet. An awesome gal!

Much love,
Marissa

* Thank you babe for being the camera man!

6 comments

  1. Came across this on facebook and I appreciate your blogs. When you describe your symptoms of the constant movement it sounds just like what I am experiencing. I’ve been to two neuro-opto’s and the one I just saw friday called it visual vertigo, and he offered no help with the symptoms and said there was nothing he could do.
    Just like you it was also hard for me finally realizing that I was not able to return to work and had to identify with the label of being “disabled”. Sometimes you feel like you are the only person in the world dealing with these issues, but I see that I’m not.
    I do have a deficit in one of my ears but I have a lots of muscular issues also which do not fall in line with the vestibular balance disorder. So I am in the process of trying to get a Dr to look at all of my symptoms as a whole and not just symptom per symptom.
    The other thing I wanted to comment on was that I read that you are trying to work from home but I can’t even do that at this point becasue of the vision issues are so bad. I can only stay on the computer for a few minutes at a time, some days not at all, reading a book is out of the question……it would be hard to work at all with balance issues, vision issues, fatigue, and muscle twitching. I just can’t do it at this point and I’m afraid that I might not ever again, and that is hard.
    So…. I’m just trying to get through the days of wanting to just give up on trying to find source of the problem. Vestibular rehab has not helped, it has only stirred up the constant movement I experience. So I keep moving on…..Thanks, Rebecca West

  2. Hello Rebecca,

    Thank you for reaching out and sharing your experience. When I hear each person’s vestibular journey I find parts of myself in each story. I have had this condition for a total of 7 years. It has taken time to be able to get back to certain activities such a reading and accessing the computer. For the first few years those two aforementioned actives seemed impossible; it took years. It may continue to take years. I kept pushing the reading. I would try and read daily for as long as I could until I started to notice an extended amount of stamina. I can’t read for long durations and reading takes a ton out of me, but I feel like I am training myself. I have clung to audio books as a solid alternative. As for the computer, I take a ton of breaks. I could never handle a data processing job where I am required to sit in a chair for the duration of the shift. I often move and find that taking my laptop around the house helps. Being stuck to a desktop is not the optimal situation for me.

    Have you heard of NORA? They are Neuro-Optometric Rehabilitation Association. Check this out: http://www.nora.cc/for-patients-mainmenu-34/balance-a-illusions-of-movement-mainmenu-68.html It may be worth it to contact the president Dr. Carl Garbus. He may be able to offer advice or suggest an eye doc in your area that may be able to give you another opinion. I have seen improvement after having the prisms put in my glasses along with the Binasal Occlusion. I am not crashing into walls around my house ( my arms used to be bruised up). I have a better sense of perception.

    I can feel where you are at right now. I know how low this condition can take us. Not knowing what is happening to us makes the journey more daunting. Know that you are not alone and that everything you are feeling is valid and relevant. I believe your desire to look for a multi-level approach is very smart. Keep pushing and know that you have someone here for you. Please keep in touch!

    Much love,
    Marissa

  3. I love love love the support! You are rocking that shirt :-) I hope that you had a good appointment. Im so excited about this month! Much love to you and the fam. Talk to you soon!

    • You are the best! It feels great knowing that I’m not alone. So happy that you felt the excitement! It’s amazing rocking an awareness shirt. Being able to connect to another person is powerful. So glad you are excited! Keep pushing forward. I got your back! I am glad you have mine. This month I’m really going to need it!

      Much love,
      Marissa

  4. Hi Marissa and Kim.
    I can’t wait to read the blog interview for this months topic of rare diseases: Liver disease – (Budd Chiari Syndrome). Kim: I enjoyed reading over your blog as well and pray you will get your liver transplant soon. There are over 100 different types of liver diseases thus I was not surprised to not have been familiar with Budd Chiari Syndrome. We need to educate more people about liver wellness and erase the stigma that liver disease is a disease of alcoholics and drug users. Liver disease is non-discriminatory and because we cannot feel our liver, and it has the amazing ability to regenerate itself, many people can be affected without even knowing. I just wanted to share that you both are an inspiration and I appreciate your strength and the effort that you are putting towards educating others about your illnesses (and other rare illnesses.) Blessings – Kristin

  5. Thank you so much Kristin for your support! I appreciate your passion to educate people about liver disease. Your willingness to send me awareness material shows your dedication and desire to help others. Thank you for being part of the project! Blessings to you.:)

    Much love,
    Marissa

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