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Obsession 

Have you ever been obsessed? Unfortunately, I have. Obsessed with, oh I don’t know, let me list the ways:

  • Food
  • Relationships 
  • Looking at Pinterest, Facebook, social media in general 
  • Naps
  • Ignorant television shows

So, you see, I kind of have a tendency to obsess, unless it is a healthy thing then, ironically, I run like hell. Well, actually, that’s not true either because I can only run in my dreams. But, enough of this.

My latest obsession is searching for the perfect pictures to add to this blog. This week I have been attempting to put today’s aspect of me now into the framework of photography or clip art. And, boy did I. 

What I see everywhere now are barriers. My new shower (built and installed by a group of teens on a mission trip) has a 2-3″ lip. Barrier. They also repaired the threshold of my front door. A rise that those who walk freely do not notice. Me? A barrier. A door. My door. Business doors? Barriers. Steps? Big time barrier. No ramp, no go unless my son is there to pull my wheelchair, with me aboard, up.  Toilets without grab bars? Barrier. Grab bars not at the correct height? Barrier. 

I could go on. 

I am attempting to jump start my brain to rethink the world. I believe that many people before me have had to use their creativity to solve each of these and more. Unfortunately, I find myself searching for solutions to my problems from someone else which is problematic because of several reasons. First, everyone has a different view, vision of the problem /barrier. That being said, the solution will be applicable to their viewpoint and oftentimes not to mine. 

Secondly, I have gotten myself to ‘the easiest way possible’. In this case, I want to profit from the actions of others. Why? Well, it can’t be because I have no time. I really have nothing but time. Boredom? Well, maybe. I always have a list of things that need completed and the list remains the same day after day, or worse grows longer. But, the change of thought, my broken string of the day, is that I see things as a barrier and not as a challenge. Barriers are a negative, a scary thing. A challenge is a test and often a game. My brain will be used to create a strategy. A course of action that will be tried. After that I will monitor if it worked or need to be restratigized. Again, I have to remember, I have nothing but time.

To ‘step up’ to this challenge I have a significant ‘barrier’ that will worked out in the next few weeks here. The BIGGEST barrier is self confidence. I am trying different responses to the fear/anxiety that has gotten fairly strong roots from the manure in my mind and soul now. Ideas? Yes, that needs to be my next obsession because this is crippling. 

Yes, my search resulted in doors. Closed now, waiting to be opened. My hand is reaching for the knob. Wish me luck. 

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The problem with normal 

is that there is no ‘normal’ but nobody tells you that until you get beaten down. We are measured from conception: ow much weight our moms gain in the pregnancy 

How much weight our moms gain in the pregnancy 

How far along when she first felt movement 

Birth weight 

Length

What percentile all the way through childhood 

Only to be replaced by:

Grades

Conduct

Standardized tests

President’s Physical Fitness Test

Number of friends on and off the Web

Age when you reached puberty 

Age when you had your first date

Age when you ‘lost it’

SAT or ACT score

Number of colleges you were accepted into

Number of bedrooms, bathrooms in your first house

Numbers of numbers before the decimal point in your career

Bust size–female 

Penis size–male

AND SO ON AND ON AND ON AND…..

It seems to never end! Well now I find myself competing from an entirely different space–physical disability.  

At my last job I worked for a Center for Inde Living, a CIL. The mission of a CIL is empower people who have a disability live productively in the community. At the time I still walked, with a walker. As I left I had graduated to a scooter. (I have since moved on down the transportation line)  What is strange there was that I worked with several guys who were incomplete quads. They used to tell me how sorry they felt for ME because I was still trying. YIKES! Was I a failure in the disability world?

There are so many ways to look at life and I feel that I am always judging everyone and everything. Is the sidewalk smooth? Do I ‘look’ disabled? Should I ask for help? Accept offered help? Do it by myself so I remain more independent? Ignore the activity altogether? 

I have not made the ‘transition’ gracefully. I guess that sums it up the best. 

But, if I did have a magic wand I think there is something that I would love to do. Anyone who feels the need to tell me that, ‘God doesn’t give you more than you can handle!’ would get the opportunity to live my life for a day. No, actually a week. See how the world fakes being assessible. See how it feels to have the ‘atta girl’ looks. Wonder why people run to get around you and then slow down. Get all the well intended advice–‘don’t get used to the lift chair, use your muscles’ & ‘you had better learn how to conserve your energy’. (Both said to me by the same physical therapist a few days apart) Get invited to something but have no idea how to get there. 
Yes, I would give them just that. A chance to be me. And then, after the week, I would love to sit together and grade each other’s experience. I have to believe that, if a person truly tries to understand, there would be much more efforts made to adapt. 

In the end, I also think that I would see the strength I have. That I have always had.

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Doorway to…..

As a part of the 30 day challenge that I am working with one of the things we are instructed to do is find an object which, when seen, would remind me of the 30 days. I looked into many things but had difficulty choosing. But, no more.

As you can recognize, I chose a crystal doorknob. It may seem odd, but it is very well matched with the challenge. Why?

  • it has power. A simple twist opens a brand new experience, or into the comfort of home.
  • It holds onto a time where efforts were made to create beauty, elegance. Nothing was left to be simple. (This is something that I must work on. Beauty isn’t in the top 1000 words I would use to describe myself.)
  • it now has little value currently, it has become detached from its duties.
  • it has become something else, my challenge symbol.

As I look at it I see myself. Gone are the days when I knew what I was supposed to do. I had a designated role. People knew my role, strength and used me to get to where they needed to be. But, it needs to be noted that I did put a lot of effort and time to be the person who felt strong, needed. Now, not so much. Most importantly, I feel detached. I feel that I am not opening doors for anyone, even (especially) me.

But, I can. But, I will.

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Committing time to and for ME

I am again looking to identify why I am willing and able to not get back to ME. I really don’t understand why. This past month I registered for a 30 day mindfulness program. You may have done one of these, too. It is a daily prompt. You pick the journey. I have now started it for the 3rd time. 

I have no idea why today gets in the way of life.  

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What does bravery look like?

I am learning that a word’s meaning is oftentimes on a sliding scale. Words that measure are great examples–hot, cold, short, tall.  What is a cold day for me–heavier jacket, jeans–may find right beside me someone in shorts. We don’t have to feel the same. That is a given. 

But, what about words like ‘brave’. Saying the word out loud brings to my mind photos of the Marines raising the flag on Iwo Jima. I am called to remember first responders fighting fires. Protesters standing their ground against the authority when their view of the world is being compromised. Yes, these are just a few examples of bravery in my mind. Me? I see few examples in my life now. I see myself crawling and choosing to stay out of the limelight. 

But, back to the string that has broken. I am taking a 30 day challenge to work on living with intention. Daily l receive an email with a quirky challenge, a word of the day and a short challenge. I just received, sent once a day, the challenge set for day 10. Yes, I am 9 pictures, okay yeah days, behind. 

The intention today is ‘bravery’. Perhaps this is my missing string? I see myself fearing everything right now. Am I going to fall when I stand up, when I go down the ramp, when my wheelchair gets too close to the curb, when there….—I could go on and on. Anxiety about living is a horrible thing.  

I am going to work on this. I am going to try. 

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Frozen Debby

Frozen Charlette was a story and porcelain doll popular in the late 19th century. Inspired by the story of a young woman who was too stubborn to appear a certain way that she self destructed.  I see a lot of similarities with how I have viewed myself. 

I worked almost entirely in social services. I am a whiz helping people become ‘connected’ to services they need, and deserve. I am a bull dog–I will fight for you to the death when you are being wronged–when you are denied anything. I will tell you over and over how great you are and point out examplesto support the praise. If there is something I can do to make your results better I will: lend you money (lending? No more likely give) to reach your dreams; look for instructions, print them out & prompt you to complete the task. I’m sure these aren’t the only thingsthat I do for you but will not extend to myself. 

  • I suppose that my message to myself, and anyone willing to take the time to read this, that, when a limit is placed on my and life, look the squarely in the eye and go for it. Believe not only that I can do it  but deserve it. Practice self love. I am good.  (Doesn’t necessarily feel right, but it is a start.
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Living life as a meme

I seem to be seeing myself in all these ‘damaged goods’ posts on social media. Three out of four strings, gold in the cracks. I need to find a new vision board. That has to be my focus. 

I am, unfortunately, where I find less joy in a lot of things, people and places. As the weather gets hotter my options become more limited. I find myself jealous or cynical. 

Change takes effort. I. Will. Once. Again.

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The tension before the string broke

You know, sometimes it is the artist’s task to find out how much music you can still make with what you have left. Itzhak Perlman November 18, 1995

The day you hear bad news it is sometimes to forget that there was a before. For some ‘disabilities’ there may be an event that immediately precluded it. One of the easiest examples would be an auto accident. You are fine one day, well minute, then the next your world has changed. With a chronic disease, the loss is incremental. The diagnosis may be found when they, and you, wrote it off as something much less menacing. The words are a shock, but normally, the impact is limited and oftentimes, with treatment, symptoms may be reduced. You may forget it, the words take a backseat in your life. Fortunate as that is, I faced it as ‘out of sight, out of mind’. I have a track record of not putting emphasis on my physical well-being. I have loved, a lot, of soda, sugar, salty chips… Exercise or watch television? Where is my seat and snacks? I know now that I made bad choices.
So, now is the part of the gig where it is put up or shut up. I can keep looking at short-term results or life. Last year I spent 12 hours in a crappy nursing home. I had c-diff, an inflammation of my bowels, caused by long-term antibiotic use. I had been on strong antibiotics for three weeks for cellulitis, due to the lymphedema. The c-diff resulted in an eight day hospitalization, I was OUT OF IT. Because of being sick I had much more problem walking, getting around. I had been getting the run around from the state getting my personal assistant so I had no help at home (I live alone). I was discharged to the nursing facility and I lasted about 12 hours. Lots of reasons why, I could use this entire page could be examples, but it is neither here nor there. I called my daughter.’’ I got out. I called my neurologist to ask a favor—admit me to the medical center where he is on staff. He agreed. Unfortunately, he admitted me to the neurologic floor and that gave the staff a hiccup, I had to be on isolation, they transferred me to a medical floor where I stayed for 10 more days. Then I was transferred to a rehab center for four weeks. It was the lowest point in my adult life.
I must get it together. I am reading the Protocol and have eaten fairly clean for the past two days. I have stretched, not exercised, but at least stretched. All meds and supplements taken on time. Water has been drank, no other liquids.
Every so often, when I feel stuck, I draw a card from a deck of energy cards in my drawer. The story behind the card was that, “a period of growth and satisfactory growth towards your passion”. I will take it. I will state, out loud, that my passion is health.
Today I am ending on the note that the string that broke for me is for self-care. My family didn’t model it, I went into a profession where it was shown that our greatest gift is shown when we had complete control over our caseload—I worked in social services. I know now that this is impossible and harmful to me. Self-care should be a required college course. The tension I put on my ‘string’ made it certain to break. But, going forward is up to me and the relationship I forge with my team—family, personal assistants, medical providers. Here it goes, I cannot go backwards and, to some extent, what is done is done. My eye is set on the prize.

Posted in Personal Journey, Uncategorized

Every composition starts with a single note, every story with a single letter

You know, sometimes it is the artist’s task to find out how much music you can still make with what you have left. Itzhak Perlman November 18, 1995

This story starts with an “I”. Me.

Let the composition begin! As most people do, I fell into a life that is predictively normal. I had a mission in life, one that got me a lot of support from the community. I had some money in the bank. I was a few semesters away from graduating from a program that I dreamt of attending for a decade. Then I allowed the proverbial rug to be pulled from under my feet and down, down, down did I go.

So, I am now determined to rebuild my life in a new three string model. At this point my missing string is my approach to dealing with my health. High on the list are Primary Progressive Multiple Sclerosis (PPMS) and lower limb Lymphedema. Lower on the list, but adding up nicely are depression—both situational and as a component of MS, asthma, heart disease, and Pseudomyxoma Peritonea (PMP)—cancer in my appendix. Doesn’t it say something that I put cancer at the end of the ‘lower health issues’? What it all means to me is that the past 16 years has been rough, for me and for those in my life who had to go along for the ride. (I actually am exhausted by the looks and inquiries that are not wanting to hear, but expecting to hear, a new illness)

Why is my ‘approach to my health’ getting my words on this paper tonight? Why? Because I don’t get myself. PPMS is incurable. By all medical standards it is incurable, not even able to contain. The course is basically laid out and, by having it for over 15 years since diagnosis, I have given it a pretty good run for my money.

But, what if the gold standard of advice is wrong? I should admit that I have not complied with disease modifying drugs I have tried. These meds caused me to feel under the weather, forever, and had to give myself shots once a week, every two days or every day. Then, a pill was released. I started and stopped it within 48 hours. I was admitted to the hospital within the first 2 days with a GI bleed. Really? I do have great response to a ‘walking med’ and, hopefully will start it again next week.

So, other options may need to be FULLY investigated. By me. Now.

People around the world have found marijuana reduces significant PPMS symptoms. Montel Williams says it has cured his. I know someone else who is showing a reduction in brain lesions. Doctor’s finding, unaware that she is self-medicating, but clinically could not explain it. Unfortunately, he does not practice in a state that has passed legislation approving the medical use of marijuana. Maybe someday she will be able to share her ‘clinical report’. I do, but Illinois has made the process difficult, and expensive.

Also, in my bookcase sits a copy, bought and paid for by moi, a book entitled, “The Wahls Protocol. Written by a neuro-surgeon who herself has MS, it is her personal efforts—diet and electrical stimulation—to tackle her progressing disease. The point of the documentation is that MS is both manageable and treatable to the point of a cure. Have I read it? No. Have I listened to the Audible version, just waiting for me to soak it in? No. Have I joined Facebook groups about it and read along the people who are being helped, as well as, those needing support in this lifestyle redefinition? Why, yes I have. Passive living (Oh this needs to be the subject of a string! I do this a lot.), instead of actually taking the leap. “I hear it’s hard to do”. Like losing the ability to walk on my own isn’t? Wearing Depends is so sexy. Spasms? They must be growing on me. Why can’t I begin?

Every song has a first note, this post is my note. How can I work around my missing string? Why have I accepted this ineffective stance on my health? Why am I willing to be a victim of abuse—abuse by myself? I tend to jump in with both feet. And I have drowned with that tactic. I try to start, buy what I am pretty sure is on protocol. Of course, I failed. The Protocol will be read, starting before I go to sleep. I will not assume understand it’s components. I will shop. I will train my personal assistants so they know what is expected and share my goal. The chance to stop this hideous disease. Let’s see if my composition is well received. I am stepping onto the stage now. Wish me luck.