Goals

My biggest hope is that with this blog I can help someone feel better.  Either someone newly diagnosed with Cowden Syndrome, or brain tumors (any), or Lhermitte-duclos Disease, or any rare disease.  That by sharing my story as openly as I have it will give another the strength to take their next step forward.  You see, I didn’t have that when I was diagnosed.  I hope to help it be different for someone else.

I received a compliment today from someone on Twitter (you know who you are!) that absolutely means the world to me.  Never, in a million years, did I think of today – 4 years ago.  I want others to know that it gets better.  Now, I may scream, cry, and get on the pity pot as we are all wont to do, but I do what I can to leave all that garbage here and then go on about my days:  Volunteering, working on-call when I can, etc.  It’s not easy, but I try.

I have thought about PT these past few days and can’t believe I forgot to mention to him a few things:  that I have struggled with fine motor tasks (I notice them.  This may not be a big deal to others but I know there is a change) and I should have focused more on my gait as one of my concerns.  And also told him that when I need to stand up on things (like when working out) that’s a big, freaking, deal.  It really is.

So, I don’t know what tomorrow holds, or next week or next month.  I know my next PT appointment isn’t until next week, which will give me more time to ponder about what I hope to do in PT.  Part of me wonders if my brain can make these changes, neuroplasticity I think is the correct term.  Can I?  Is there too much damage?  Was my brain scrambled too much to make any progress?  Will the insurance people count minimal progress and any progress and give me all the appointments as approved?  All this mumbo-jumbo insurance stuff always ruffles my feathers, but I am here to try.

Yup

Anything is better than nothing, right?  I know I’ll have another post soon after the next appointment because I really want to document this PT journey.  I know there will be some tears.  Frustrated tears are just par for the course now.  But, once I get the tears out hopefully they won’t come again.  🙂

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2 thoughts on “Goals

  1. I love your blog and admire you so very much , when me and my son got told we had pten / Cowden syndrome I dident no what to think felt very alone with it . Reading your blog shows you show strength hope and so much more , and that helps me too to read that. With your blog no one has to feel alone with pten.
    Respect and hugs to you From Gillian and my 6 year old son . x

    • Dear Gillian: I am so glad you KNEW that this post was because of you and the comment you said to me on Twitter a day or two ago. I cannot thank you enough for the kind words – but I can try: Thank you! You have no idea how much they mean to me. ❤

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