Monday, May 17, 2010

Buoyed By Your Support...

It's Monday night and I'm preparing myself for tomorrow's outpatient port access. 

While I am not at all looking forward to another three days crashed out from the outing, I wanted to take some time to tell you that I will be buoyed by all of the emails, texts, and Facebook comments I received. Y'all know how to show some love! 

I am writing this post because I received such an overwhelming amount of support and I don't know how to thank you all enough. 

I had been feeling a bit 'wimpy' about my devastation over losing home care and then getting kicked in the stomach by the outpatient nursing care I received, but you all made me feel like I was not at all being wimpy!

You got angry for me. You wanted to spit and scream. You sent extra prayers. You cried for me. You offered to do anything to help. You offered to do many things to that nurse, including make *her* cry. You validated me. 

Two friends who are doctors themselves expressed their disappointment in the care I received and the loss of home care. 

Many of you have wondered how you can help and feel like you are not doing 'enough' for me. It is me that never feels that I am 'enough'. To you all, I say: You have gone above and beyond for me. You give me the gift of your time by reading my blog and responding. This is a huge gift, as I know how busy life is for you all. You remain patient, loyal and steadfast while I often go long periods without writing back. You show compassion, empathy, and support. You keep giving without expectation of receiving. You pray. A lot. You wait for me to reply to your needs without angering at my delays. 

This, my friends and family, sustains me more than you will ever know. It is true gift.  Through you, I feel God's presence in my life.

I am so humbled and so grateful.

Tomorrow I will take my phone with me so I can re-read your messages while I receive the Rocephin drip (30 minutes). I will take a comfy down pillow with to make the reclining chair more comfortable. I will wear my flannel PJs (It is still so cold here!). Oh and my TV, which I went almost two weeks without is FIXED! So, I have a little respite to look forward to in that department if my ANS isn't too freaked out.

As for a little update:

We have spent a great deal of time trying to find ways to re-institute home care. Yesterday I received an email from Dr. ANS that he would be willing to write a letter justifying home care. I felt my whole body breathe a sigh of relief. We also feel that Dr. Lyme will write a letter also. I'm working on getting my PCP on board.  The challenge is getting so many different doctors at so many different locations coordinated.

The biggest problem is trying to find a way to get all the little boxes checked in the exact way Medical Assistance wants them! (I'll try to explain the whole denial at some later point!)

And no worries, we definitely have plans to file a complaint about the nursing care during the first outpatient port access. It has just had to stay on the back burner while I work to try to get home care again.

Love, Hugs, Gratitude and Many Blessings,

If, as a spiritual advisor once told me, each time we think of someone it is like saying a little prayer for them, then you are all prayed for a LOT! I hear you when you tell me your little guy isn't eating well, your Grandpa is sick, your missing your mom, etc. and I send my thoughts to you constantly. Do you feel them? Are your ears burning? :)


Photo:  'Pollen-less' Cherry Blossom necklace from a new friend. She made this herself! I wear it every day as my 'little something pretty'. It matches all of my PJs. And it unites me with a fellow person struggling with chronic illness. Isn't it gorgeous? Her random act of kindness blew me away!


catier said...

as you fall asleep tonight, hold in your head the way you want tomorrow to go. how great you will be treated, how comfortable you will feel, how many loving emails you have to read while the golden shining fluid flows into you to fill you with more fight and more health then ever before.
peace and sweet dreams emily!

Katherine said...

I love the necklace. So pretty!
I hope today is going MUCH better for you than your last experience.
My thoughts are with you.

Rachel said...

I wish I had free texting on my phone plan so that I could send you little messages every time I think of you.

I hope that today went much better than last week.

Lots of love to you,

DizzyGirl said...

i hope that all went well for you.. and i will be praying that you can get your home health care re-instated!!

much love

Anonymous said...

Emily, Your words hit so close to home and I am so deeply saddened that this care or lack of continues. Your blog should be standard reading for those individuals studying to enter the medical field. Your words and actions have demonstrated such grace in the face of such disrespect.

Wouldn't it be wonderful if the medical community only had to deal with 'well' check ups!!!!!I have known such 'indifferences and the energy it takes to keep moving forward. If you chose to 'lose it' entirely with any medical personnel, you would have so many other labels applied to you.

The grace and patience that you exhibit will hopefully plant a seed for others. When they have their 'light bulb' moment, you will come to mind. Then, the people they treat from that day forward will benefit.