Be U: Scleroderma Certified

Coming for the Real You.

I'm hoping to share thoughts, fun and insightful information and aha moments with all to better serve ourselves and the universe.

My background is that of Executive Secretary for the local Electric company (11 years).

Certified Personal Trainer (since 1991) and Fitness Consultant for my own company, Beachin Bodies (6 years) and certified in Reiki and Nutrition with training in Cranial Sacral work, Tai Chi, and Meditation. Certified as a Professional Life Coach (2015); Minister at Universal Life Church (2016);

and, possibly, most important,

my own journey through illness and avenues, roads and roadblocks that I have taken to find the real me. (35 plus years).

The me that I was born as. The me that is the all-knowing. I believe the search is endless and we are here to learn and to love and to share it all.

Tuesday, July 20, 2021

Scleroderma Certified

I am looking at this as my last 'certification' (about myself) to share. I think it is a good (albeit vulnerable) truth to share with you so I can, deeply, share all of me; all about me with You.

I have already individually posted, on this Blog, my Certifications as a Personal Trainer; a Life Coach; a Reiki Practitioner; and a Minister.

This 'Certification' just may be most important in ways that truly matter and have driven a lot of my lessons, teachings, experiences, wisdom and depth of who I am and what my purpose is in practicing under the 'umbrella' of Just 9Be U, llp.

Scleroderma is an auto-immune dis-ease. Waaay back when I started getting symptoms at the age of 17, maybe a handful of doctors were aware of it. Even today, while most doctors have at least heard of it, it can take years to diagnose and it is not easy to treat or understand. There is no known cure.

I was diagnosed when I was 21. I taught many doctors what it was for decades; from my own understanding. The scleroderma patient is still teaching doctors as no two of those that are diagnosed with scleroderma have the same exact symptoms. There is no one drug that helps every one with the dis-ease. It hurts. It is painful. It is disfiguring. It can, for many, be life threatening. Definitely, for almost everyone, it is life altering.

Scleroderma is a long-lasting 'dis-ease' that can affect one's skin, connective tissue and internal organs. It happens when an overactive immune system causes the body to make too much collagen. Collagen is the 'glue' that holds our body together.

As a result, skin gets thick and tight and scars can form anywhere on the body and/or organs. Blood vessels can thicken and contract and slow the circulation down from minimal to almost non-existent. This can lead to tissue damage and great dysfunction throughout the body and on the skin's surface and just below in the fascia.

I feel like I have 'spanx' on most of the time, from my head to my toes. My body and skull can feel like they are in a vise. My face and hands have changed dramatically. I get ulcers on my fingers that disintegrate the tissue and are so painful if I knock them up against something--well I used to say that it feels like it is sending me 'to the moon and back' with extreme quickness and brute strength. Ouch.

I do a lot of every day things very differently. It takes me, very often, a lot longer to do them. Forget buttoning a button or putting on a piece of jewelry with a clasp. Unloading the dishwasher can be a challenge.

Flexibility and agility in my hands is very limited. And, when I get cold or very anxious, I contract. My already hardened blood vessels contract and my hands and, sometimes, feet go numb, turn purple and are extremely uncomfortable. This is called Raynauds Phenomenon.

While there are many things I have learned to live with, I'm still amazed how affected I am by the weather. The cold has long felt like an enemy. Scleroderma can feel like living with a terrorist because one never knows when it will strike.

While there are many things that challenge me, I have been blessed with lessons of deep humanity, opening to love, great gratitude and enlightenment into being human that I would not have gotten if not for this dis-ease.

I have lived with it 40 plus years and, because of this, I have been blessed with a phenomenal growth of soul and spirit, empathy and understanding, allowing, directing and redirecting and flowing with what is.

The medical world can offer me very little for comfort so I have learned that my comfort is an inside job. Healing and acceptance is an inside job. Praising and living in our humanness positively is an inside job.

Our lives here on Earth are an inside job out.

When we share what is going on inside of us out, miracles, peace, harmony, alignment and great love can appear and happen.

I have tried many, many alternative medicines. I have read up on chronic dis-ease, inner wisdom, connecting to nature and listening to my body and inner loving voice. I have experienced many holistic modalities in the name of peace within and healing.

I was told I may not make it to age 30. Double that and I am still here.

I am here to support our world. I am here to share different ways to look at life. I am here to slow down if not stop suffering. I am here to teach how to choose yourself and to know who you are without all your labels. How connecting to one's breath and silence can connect us to our greatest and most applicable wisdom.

My life has brought me here. I show up fully, ready, open and no matter how I feel, I can still choose love. I can still support and be helpful.

May you show up from a strong sense and loving stand of You. May you be ready, open and no matter how you feel, know that you can still choose love. You can still answer your calling. It is what You are here to do.

Be the truest, best, highest version of You. Know it. Live it. Share it. Shine it. Enjoy it.

No comments:

Post a Comment

My Past Story

The first thing I would always tell a new doctor was 'my dad left me when I was 10'. He just disappeared, ran away. It was pretty awful for me. I thought it was my fault as most kids sometimes do. I thought I was unlovable. Years later, 20 maybe, I realized it wasn't just that my dad left me that affected my life, but also that my mom stayed. She stayed and I'll be forever grateful. However, her staying wasn't all peaches and creme. She was so hurt, so distraught, so frightened to raise three kids on her own and find a job that it was very hard for her to be there for me and my needs. I chose to shutdown, be quiet and try not to make it any harder on her as to not ask for much, or voice much, or need much.

Years later, in 11/12th grade, I noticed my fingers being really cold and hurting all the time. I noticed them turning purple and the pain was very 'loud'. Humorously enough, I had chosen to be a secretary and typing was a big part of my everyday. I loved it even. Fingers flying across the keyboard with as little mistakes as possible was the goal. I was pretty good at it. While in typing class, I remember putting my hands on my neck to try to warm them and make them feel better. I was naive enough then to think this must be happening to everyone.

Anyway, years went by and nobody was able to tell me why this was happening or what to do to make it better. Then, approximately 4 years later, I remember (what I felt) was little me sitting across from a really big doctor at his really big desk and him telling me I was allergic to myself. Of course, this was him describing to me what auto-immune meant. I had a disease called scleroderma and it could kill me (sometimes in as little as five years) and I would most likely be on medicine and have it for the rest of my life and there was nothing to change it.

Anyway, almost 30 years later, I've had my share of pain and I'm alive. I've had ulcerations on my fingers and I have lost most of my nails on both hands from lack of circulation and producing too much collagen. My hands are somewhat not a pretty sight and to hit something with one of my fingers by accident (well, I refer to the feeling as 'going to the moon).

When I was about 30, I started looking at alternative medicine and I tried anything that came across my path to try to stop the pain. I have tried many normal and not so normal 'ideas'. I sometimes do not believe at what lengths I went to try to ease my pain and suffering!

This is what has brought me here to this point in my life.

I'm grateful to be able to learn so much about myself and life and I wouldn't take it back (well, some days I might want to).

Something was telling me to blog. I really didn't know much about blogging - I am still a novice at best. Approximately 5 weeks ago, I sat at my computer and started typing.

I am surprised at where my blogs have led me. I thought I was trying to help others and that still is a big goal of mine. However, what I am finding out is that this is a great outlet for me.

A way to feel like I'm doing something. I told a friend this morning about my blog and I said that it's draining because I put everything out there and do not hold back as I post each individual blog; its fun because it does give me an outlet and I feel a little purpose in my life; and it's scary because I don't want anyone laughing at me or telling me that I am completely 'off my rocker'!