Loocie's Sarcoma Journey Thoughts, Feelings & Snippets.

[Skippy]

I am so sorry about your friend.I admire your tenacity and perseverance,you are an inspiration.

[Lee03]

[Mechman47]

Daisy is under the desk, chin planted on my knee. OK now she is back to leaning and free panting.
She suffers more with fireworks each year.
I wonder why that is. It didn't bother her at all when she was young?

I guess our patience thins as we age!
That is an understatement!

[Mechman47]

I can take the thinning, Its the sagging that gets me.
Gravity is winning, way too fast!

[Horndogg]

I'm having a hard time posting this after Lynn's post and I'm sure I posted this before, but I really love this.... This is for you Loocie


Attachment 311881

that is beautiful

[SillyLoocie]

Today, I am feeling like I have energy & I am able to eat comfortably. As I inch my way into week three of my treatment, I think I am ready to take it on. I still can't help but wonder what is in store for me in regards to a treatment & attack plan. Feeling intrepidation big time.

[SillyLoocie]

A NF Fighter......My friend who is in palliative care with cancer & NF wants the dialogue to get out there. We are trying, but we are only a small group.

[Natalka]

[Lynn49]

[Spartacus]

Hope you're feeling better Loocie. Positive energy to you. PEACE and LOVE

[Natalka]

Hoping you can relax this weekend and that you are doing okay.
I continue to have you in my prayers!

[SillyLoocie]

I am having great difficulty with blurred vision. It is an exercise in frustrating futility. It is a side effect of the drugs. My chemo drug as well as the anti nausea & the steroid drug. I am so light sensitive & it seems that none of my glasses make much of a difference.
Now- I see my eye doc this week, & I am back at Princess Margaret the following week.Not really sure how long this will last. (it's been getting worse over the course of treatment.

[SillyLoocie]

Imagine having a medical condition that many doctors have never heard of, that is so diverse and unpredictable that no doctor can tell you which symptoms you will have and when? This is obviously not something most people would wish for – but this is the way life goes for many people with neurofibromatosis. Often misdiagnosed or not diagnosed until complications arise, people with neurofibromatosis also face very limited treatment options.

Neurofibromatosis (NF) is a term for three distinct disorders: NF-1, NF-2 and schwannomatosis. NF causes tumours to grow on nerves throughout the body and can lead to blindness, bone abnormalities, deafness, and disfigurement, loss of limbs, learning disabilities and excruciating disabling pain. In some instances, even cancer. NF-1 affects one in every 3000 people and is more common than Cystic Fibrosis, Duchenne Muscular Dystrophy and Huntington ’s disease combined. There is currently only one adult clinic in all of Ontario that specializes in NF and only one NF dedicated children’s clinic. Both clinics have long waiting lists.

The Neurofibromatosis Society of Ontario (NFSO) is a volunteer run charity dedicated to supporting individuals and families affected by NF. We also network with doctors, clinics and researchers. We are not funded by the government. We rely on donations, fundraising and memberships to keep our cause alive.

In order to support research into better treatment options and to increase the number of doctors caring for people with NF, we need to make more people aware of this condition.
Our mission is to creative awareness and to fund the support we offer families – WE NEED YOUR HELP. We will be running a variety of fundraising and awareness events and we are looking for donated items to include in our raffles silent auction and/or monetary support of our charity. Any donation over $10.00 is eligible for a tax receipt.

Our charity is based in the GTA but we support the entire province of Ontario. Our mission to inform and educate. One in 3000 people have Neurofibromatosis type 1 (NF1). There is NO CURE.

I am afflicted with NF-1. I was one of the people who were not diagnosed until late in life. I ended up losing my right leg amputated below the knee due to this condition and I have had many health challenges.

[Skippy]

Sorry Loocie for all you have been through and are going through.Thank you for providing us with all this information.Take care of yourself.You're a fighter! Still praying for you.

[Hondamanic]

Big hugs to you my dear friend!