Snippets of HOPE - PRP Alliance

From the Editor…

If you would like to submit a “Statement of HOPE” for inclusion in the PRP Survival Guide, please use “Leave a Reply” at the end of this webpage.

Alan B, LakeLAND, Florida, USA

Snippet of Hope
I was scared when my PRP journey began. Why me? How long will this journey last. I had lost control of my life and was miserable. I knew I had to stay positive and not let the disease control my spirit like it was controlling my body. Staying positive and being made every day a bit easier.

When I began my PRP journey I was scared and, like many of you. I had so many questions. Why me? How did I get it? Do I retire? Do I take leave? How long will my PRP journey last? And a thousand other questions.

I broke down and cried one morning just from the overwhelming fear and hopelessness I felt. I had lost control of my life which I had navigated so well for so many years. I was miserable. Whether I was in it for another month or another year, I knew I had to stay positive and not let the disease control my spirit like it was controlling my body. I started telling myself, my wife and anyone I spoke to about the situation , “I’m one day closer to being healed”.

My wife did everything to make make life comfortable as possible and I knew the last thing I wanted to do was be negative – complaining and whining about how miserable I was.

This disease affects every one you’re close to – particularly your caregivers. I was asked at one point, “Why are you smiling in your Facebook picture? My response: “I can’t complain because I am one day closer to healing and I know there are other ailments that could be so much worse.”

Staying positive and being hopeful that it would soon go away made every day a bit easier. While I’m not 100% clear yet, I still have hope and I know I’m one day closer to being completely well.

Carol T, Swaffham, England, UK

Snippet of Hope
When my PRP journey began I was alone and utterly terrified. I saw hopelessness in my mirror. But the flame of hope was ignited when I found the PRP Facebook Support Group. The flame shone brighter as I reached out to my new global family, all of us on a similar journey. Hope springs eternal.

My journey began when I was discharged from hospital with a Care Package in place. I was now on my own …… alone and utterly terrified. I cherished the carers arriving – I felt safe. I got used to standing naked while they undressed, creamed, bathed, dried, creamed and redressed me. I caught my reflection in the mirror and saw hopelessness. Then I “accidentally” found the PRP Facebook Support Group and the flame of hope was lit. I was NOT alone. I was NOT a freak. I was NOT the only one walking this destructive journey. The flame shone brighter as I reached out and found new friends. I now belonged to a global family, living a similar journey, who were also reaching out. My thanks to all of you. Hope springs eternal.

Jan T, Ringwood, New Jersey, USA

Snippet of Hope
The PRP Facebook group offered hope, knowledge, and community: there were others like me. With knowledge came power. With community came the realization that there was a “We” in all this. With help came hope.

Hopelessness = Helplessness
Hopelessness = Powerlessness
Hopelessness = Futility

Hopeless as in a hopeless case: incurable. Powerlessness as in there’s nothing I could do about it. How would I ever get through this?

Hopelessness = desperation

Desperation, as in disfigurement, intense itch. I could do nothing to stop the relentless march of PRP. Can’t look in the mirror. Can’t look at the mess on the floor. But with help came hope. With knowledge came power. With community came the realization that there was a “We” in all this. Diagnosis brought help. Nothing inspired more hope than when my dermatology team said, “We are going to help you.” The PRP Facebook group offered hope, community, and knowledge: there were others like me. There were people out there fighting for us–to get us noticed, to inspire researchers and doctors to find better treatments and maybe a cure. And there was straight talk: this is bad, this is misery, this is what you might have to go through. But you will get over it, you will find ways to live with it, it will not define who you are.

Help = Hope Knowledge = Power Community = Solace and Strength

Richard L, Lansdale, Pennysylvania, USA

Snippet of Hope
Hope can be elusive. One must chase after it sometimes. But when you grasp it, hold onto it as much as possible each day. Hope is a sustaining attitude that complements, and even improves, our medical treatments. The sharing of information has made my own hope even more robust.

Hope is an essential element in our journeys. It is our individual contribution to the best possible outcome for each one of us. It is a sustaining attitude that complements, and even improves I believe, each of our medical treatments whatever they may be. Hope helps us look forward to better tomorrows, whatever our age and type.

Many times I have “given up hope” or “all hope was lost”‘ as they say. That was not helpful, and it certainly ruined the rest of my day(s) during those episodes. Hope can be elusive. One must chase after it sometimes. But when you grasp it, hold onto it as much as possible each day.

Hope is made up of all your mental, physical, psychological, and spiritual capabilities. I’ve found that keeping these aspects as healthy as possible improves the strength of your hope. Hope is what makes us distinctly human.

My hope has been made more robust by INFORMATION and KNOWLEDGE. This has been primarily obtained by interactions with the PRP Facebook Group and its references to other sources. This has enabled me to understand and make choices. As well, it has given me a deeper appreciation of the condition and “hopes” of my brother and sister PRPers.