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Monday, October 19, 2015

I'm currently back in the hospital for another round of treatment to try to revive my dying feet. I call them my 'dead Barney' feet since they often vacillate between roaring fire red and deathly purple. And always pain-filled. My hands, face and entire legs behave the same way now, but it's my feet that are most threatened currently. So it's off to the cardiac wing for 7+ days every 5-6 weeks. It's unpleasant to say the least, but I love the nursing staff, which helps bucketloads.

One of my nurses told me that there was a 22 year old girl down the hall from me, recently diagnosed with EM. She is here for her first treatment and she's scared.

Immediately I felt compelled to ask the nurses to wheel my big bed over to visit her and talk her down, but I'm struggling with not wanting her to see what full blown EM looks like: claw hands and dead Barney legs, Santa red cheeks and ears. Barely walking, often crying from chronic pain.
It can be off-putting to many folks. Shoot, it can be overwhelming to me!
Am I being selfish here by letting my fears prevent me from going to introduce myself this girl?

My vain brain screams at me not to pursue this encounter simply because of how I look - what my EM has robbed me of over the years. I don't want to overwhelm her visually with what her future will be like, especially on her first (of too many) 'band-aid' treatments, that only offer temporary relief.

I'd like to tell her that she should fight to keep her normal life as long as she can, and not take the small things for granted.
Get healthy NOW.
Go sit in the sunshine and walk barefoot on the beach.
Read your favorite book past midnight just because you can. Dance while you fill up your car's gas tank.
Go on a road trip and take in the local attractions.
Don't hesitate.
This is going to be a rough and bumpy road. We don't have a cure (yet). Let yourself cry, but don't wallow in it. Get a support system into place - then promise yourself to use it.

I might have lost it if I saw what my future looked like 13 years ago. Too much to process so soon after the recent diagnosis. She's struggling just to get through today.

Would I be causing more harm then good by asking to meet this girl?

'Nuff said
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Member Comments About This Blog Post
    emoticon emoticon emoticon

    Hopefully sending you a little joy, that you deserve!

    I wish I could visit you actually, not just virtually. chris
    1239 days ago
    I've said it many times before, you are amazing.
    1259 days ago
    You are such a good person, do what in your heart you know as right........

    You make me see I need to life my life, not fear so much was is to come, thank you
    1275 days ago
    Oh sweetie, I always think of you and pray for you. Will continue... emoticon
    1276 days ago
    You are a beautiful soul..gratitude for sharing this..
    1278 days ago
    Sweet, kind Bren. Even in mega-pain in the hospital, you're always thinking of others. You are amazing. I think your other Sparkfriends have all said what I'd say, too, so I won't repeat it.
    Gentle hugs to you.
    1278 days ago
    I agree with talking to the nursing staff. I also think the online contact could be a good idea. Sometimes typing it to a faceless stranger is easier than talking face to face. I know you want to do what is best for both of you. Thanks for the reminder not to take my health and mobility for granted.
    1278 days ago
    What a wonderful blog post!! It's quite bittersweet, but it made me happy knowing that you want to reach out and help others. That's SO positive and quite infectious. Keep going and get better soon!
    1278 days ago
    Oh my dear sweet friend, Bren!
    I wish I was there to sit by your bed and talk...you amaze me with your strength and courage (and don't you dare think, oh if she only knew I cry or feel so helpless...I don't care...you are courageous and strong)!!! And the fact you want to reach out and help another says what kind of kind person you are! You are in no way being selfish or vain...you just care how she will be with it! I agree with talking to the nurse or nurses who know this young lady and getting their input (maybe she is in therapy and could they could inquire about what's best). I also thought the suggestion of an email friendship was a good idea (easily they could explain you couldn't physically visit)! And take your time to think about it...you need to be comfortable with it, too!
    I will be checking back on you and I apologize I did not realize you were back in the "joint"!!!
    Much Love & Gentle Hugs to you!!!
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    1278 days ago
  • NUMD97

    I read this post, wishing I could reach into the screen and touch you, and comfort you, and give you all the right answers. SENANG probably said it best, to touch base with the nursing staff who would know this patient best and her needs.

    What is so striking that throughout your 13-year struggle, you look for ways to help others in similar straits. It says volumes about you.

    Perhaps if she has a laptop with her, and you obviously do, you might establish email communication where she could spill her thoughts wantonly, unabashedly, and not worry about the person behind the screen. She could freely be naked and tell her what it's like for her, and you could respond in kind.

    That's all I have for now.

    I wish you, as always, nothing but the best,

    1278 days ago

    You are obviously fully aware of and open to both sides of the conundrum. The nurses know you are both there struggling. Perhaps now is the time to simply take it to prayer and let the Holy Spirit create the opportunity, if it is indeed meant to be.

    In similar circumstances I have never regretted waiting and let God take the reigns.

    I trust and pray that both of you remain firmly in His loving, merciful and life-giving grip.... though honestly Bren, I cannot, with my puny human brain and heart, fathom how/why you or anyone else must walk this painfully baffling and isolating path.

    1278 days ago
  • PHOENIX1949
    emoticon emoticon

    Interesting conundrum.
    1278 days ago
    Very tough question.

    I would ask someone at the hospital for their thoughts. Or are there others who know more about the EM that might be able to offer you their insights?
    It is so hard to know what someone else would want since we are all so different.
    1278 days ago
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