Be U: Screammmmmm

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.

Monday, June 20, 2016

Screammmmmm

How does one scream online, but gently, so it does not negatively affect another?!??!

Ha!

Still having monthly struggles with achieving the medicine that my body needs and is helped by.. or at least this is how it seems for now.

This month, I went in on a Monday to be certain they would have the medicine in stock (as requested for the reminder each month by a technician there) on Friday when my doctor's appointment was for. I was told yes they do, but come in Sunday and they can fill it then. I went in Sunday, I was told to come back on Tuesday and to take the script home with me so it wouldn't get lost.   Last month, I was told they want to hold on to the script (same pharmacy) and will call me in two days when it can be filled and is filled.

Each month, I have an issue. I don't know what the 'rule of the day' will be. I struggle with this. I am uncomfortable with this. It is not fun. Hence, the scream inside me wanting to come out. (FYI - I have allowed this scream its freedom!)

All I can do is walk through this. The best I can do is share my truth, keep my heart open because it feels better for me and bring the script back when told.

This is probably the sixth pharmacy that I have tried to work with since I arrived 2 years ago with local, new doctors. My schedule has been interrupted often. My fear and discomfort has grown immensely and, stress is not one of my friends. Perhaps, this is the exercise for my heart that I am getting as I am certainly not on a regular 'movement'/exercise routine. I definitely am calmer now that I was three months ago. I am grateful for this.

How can one make sense out of nonsense.   I don't think it can be done.

Either I stop taking the pills, which I would have to wean off of because my body is so dependent on them or I go along with the 'rule of the day' to get them dispensed to me until something better comes along.

It is a three part routine. The doctor, the pharmacist and the insurance company. The doctors tell me to treat it like diabetes pain meds. It is a dependency that makes my body run easier. I have been told this before I came to Florida and now, that I have doctors that hear me and/or understand scleroderma; two years after finding doctors that can empathize/understand/see me and my experience of living with my physical body. I really still don't have a doctor that seems to be able to tell me about what their experience is with scleroderma. I am lucky that I am so 'experienced/trained' in it I suppose. I am forever blessed that I had one doctor for 30 years that did it all for me. I am hugely grateful (now more than ever) for him. He kept on top of the latest research and he and I together kept me pretty healthy - as scleroderma goes.

Then, once I have the script, I have to find a pharmacist that will fill the script. Not hold on to it and not tell me why.   Not to hand it back and not to me why. Not to hand it back to me and when questioned say they are at their limit. Not to hold on to it and 5 days later tell me they don't like the pain doctor I go to and to go to this one. Then, only to found that 'that one' only offers shots for back pain. I could go on more but this is the jest of it.

Then, when and if the pharmacy gets on board, it is up to the insurance company if they want to pay for the drug and in what amount. They have paid for one drug for two months and then decided they didn't want to anymore. They also declared a monthly amount of another drug that they are willing to pay for. It was different than what the doctor's script declared at the time.

Can you say exhausting...   I surely can.

All I know now is that I am choosing to go forward believing in and trusting in the process of life. That this is happening for a reason and it is for my greater good. That everyone struggles and this just happens to be mine now. That I won't always struggle. And, that I am strong enough to outlast until I don't.

So, I persevere. I love on. I show kindness on. I share my spastic truth about my energy around this. I GO ON.

I do this because this gives me my greatest peace available. This is the best way I know how to go on. For today, I go on.

May you go on in the best way you know how to go on that brings you and allows you into being your best self; for today. Maybe our goal can be to feel good about who and what we are about.. I don't know. It only feels true from deep within.

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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'!