Be U: Scleroderma Awareness

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.

Wednesday, June 22, 2022

Scleroderma Awareness

June is Scleroderma Awareness month. All throughout my Facebook newsfeed, I am seeing information, stories and experiences regarding scleroderma.

Scleroderma means 'scarring of the skin'. Some refer to the bible where it reads about people turning to stone. Scleroderma is about producing too much collagen and it makes connective tissue hard and unyielding. It is a dis-ease of the autoimmune system.

I have had it since I was 17. I am in my 45th year of it. I have learned to not claim it as 'my' dis-ease but a dis-ease and it is a part of my every day life.

I don't consider it fun ever. I do know that it has brought me to my knees and into the depth of life, living, being human and an awareness that, most likely, never would have been possible if not for this dis-ease. It has opened me to the core of my being; again and again and again.

It started off as 'Raynauds' which is purple and/or white fingers - numb and painful because of the lack of blood circulation due to cold and/or stress. My fingers are tight, stiff and my nails and my fingertips have deteriorated because of the lack of a healthy blood flow to them.

Ulcers pop up on fingers and elsewhere for some and they are so very painful and it takes a very long time to go away. OUCH.

To pick up change, to put on make up, to get dressed, to empty the dishwasher, to grasp, to turn things on or off can be a real challenge. One day I had lunch with another person with scleroderma and when we went to open the new ketchup bottle we had to laugh as it was not going to happen through either one of us. To take a shower, I have to talk myself into it as the cold I feel afterwards takes tremendous energy from me.

I find no fun or ease in writing about this. I feel shame because of my inability in doing simple things. I feel frustration as it takes me much longer to do everyday 'normal' things that can often be taken for granted.

It attacks the appearance of my face as my skin on my face is so tight. It feels like I have 'spanx' on all over my body. It feels like my skin is too small for my muscular skeletal body.

It can affect every organ. It can affect and tighten the throat where I know some that have had to get their throats stretched just to be able to eat. It can and does kill.

I believe because of my exercising and my love and constant search for peace within, I am one of the lucky ones. I often remind myself this; especially the times when I am Not feeling so lucky.

When I was first diagnosed (which took five years) most doctors did not know of scleroderma. I have taught and shared it with many professionals. Now, most doctors have heard of it. Many do not have any patients of their own with it. Even the scleroderma experts do not have great knowledge of changing and definitely not of healing it. I find it is usually a trial and error dance between medicine and my own wisdom.

Because there is no known cure, I have for several decades now, told myself it is an 'inside job' to do the best I can to listen, respond, nurture, learn, experience and love myself through it.

What may help one scleroderma patient does not help another. Each system and illness experienced is unique for each person.

More women than men have it by a large percentage.

May you let the uniqueness of You and your experiences walk through the truth and innate wisdom that is etched inside of You. For illness, dis-ease, life, living and You being You.

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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'!