Faith Like A Mustard Seed

This continued into college. As I said, I did have a relationship with God in so far as that I believed in Him.  However, I didn't always understand or truly believe on my own that He could and would help, guide, provide, protect, defend me even if it was done more on his time than mine and more his way than mine. And outside a hospital/medical setting. In early 2000's I was named Ms.Wheelchair Ohio. It was one of the craziest, biggest honors of my life. In one year I attended college part-time, worked part-time and did over 100 appearances promoting my platform of adoption and the Ms. Wheelchair Organization.  Looking back, I see how I let fear, lack of trust and maybe entitlement stop me from having an even better year. I thought that all appearances would go smoothly with no challenges or barriers since, after all, this was a program for woman in wheelchairs so everything's accessible all the time right? Wrong. Instead of seeing obstacles as opportunities to advocate for change and inclusion, I whined, complained and even yelled to have the barriers moved in the first place. See how I'm connecting this to faith? By the end of my reign I'm 100% certain they wanted me out as much as I wanted out.  After a time though, I could see I needed that to push me toward more independence and growing faith. I used what I learned to improve my ability to speak clearly and directly about my hopes, dreams, goals. Prayerfully accomplish them with God's blessing and help.

This wasn't easy to do with very loving yet overprotective family(read that Mother LOL) I began taking little trips myself, things that were big to me, maybe not so much to others. In 2010, I took the biggest risk and moved out on my own. It was scary, for more reason than one, but it was a wake up call that for too long I really didn't know what it meant to rely on God, his guidance, direction and timing for meeting my needs and just being my Father who loved me. I had to learn that just because something didn't Look like it was going the way I hoped for didn't mean it wasn't(hope that made sense). I had to, as I say, trust my gut but really it's listening for the small voice of the Holy Spirit and trusting his direction. Do I do this perfectly, NO. I went against counsel of family and I believe God, and basically left another job before I had a new one to go to.  It took five years before another would come along. In that time, relationships changed or eroded, my activity level stalled and I had to redefine who I was since I believed so much of my identity was wrapped up in the last job I left for to many reasons to explain here. I applied to as many jobs as I could. I got interviews, but either was rejected time and again or I was overqualified.  After a while I gave up.  Depression was diagnosed. Somehow this wasn't a shock, I was just glad to name it and do something about it.

Faith- Certainty without sight

For those who are new to this blog or being a friend, a little about me. I was born with and live with Spina Bifida, a neural tube defect that occurs days after conception causing paralysis plus numerous internal and external complications. Also, I was raised either in my biological family or adopted family in the Christian faith. That meant attending worship twice every Sunday(as much as possible)rarely on Wednesday. During the week we prayed, read the Bible occasionally and followed what we believed were the tenants of our faith(believing in Jesus Christ as the resurrected Lord and Messiah in addition to things like don't drink, smoke, swear, wait until marriage for sex, children did as they were told, there were consequences if we didn't. I still live by these and I'll get back to them). We believed in the Holy Spirit but didn't talk much about it as it was associated with unexplainable things such as miracles(we believed those only happened in the Bible). Somehow, whether it was taught outright or it's what I internalized from what I saw and heard, I came to believe that following all these things without question was all I needed to do to  be saved and assured of going to heaven after death. To go against these things was, in a sense, a point of no return. In other words, once one becomes a Christian, sin is unacceptable and unforgivable. I had come to believe my salvation, though given through Christ as a gift, was within my control since I could follow rules and/or do as I was told without question or argument. I believed I was "right" and most others were wrong when it came to matters of religion. Relationship w/God wasn't something I thought I could have and prayer wasn't really conversing with him. He only wanted to here certain things. Again, this may or may not have been outright taught to me, but I internalized these messages based on what I heard and saw from others.

Most of my life I'd heard and believed "Faith is being sure of what we hope for and certain of what we can't/don't see." This helped me with things related to my disability. For example, across my life I've had nearly thirty operations/medical procedures. As long as the doctor could tell me and my family what the problem was and how it could be dealt with to get me back to a more normal life, I placed my trust in God and mostly in whichever doctor to do what they said and usually I got back to my normal soon. Also, anytime there was a problem or concern that came up with our schooling and being included or getting needed accommodations, we knew that with our mom's help(which included but not limited to her fighting on our behalf) we would be accommodated/included as best was possible.  In both these examples and many others I came to believe that with "faith" in God and/or whoever helped us through situations, our needs would be met exactly as we decided they should be.  As I got into adulthood and began to speak more for myself and advocate for my needs, I found it more difficult to explain myself in ways that got me the outcomes I believed I needed to be included or accommodated. In other words, if I didn't see things happening the way I felt they should, I didn't have trust that I'd be included or accommodated and that I had lost control.  I almost quit college because of this.  I definitely left one job over it.

Finally Up To Date

April 2019

I'm getting more acquainted with this again so I just wanted to give readers an idea of the content and suggestions of how we all interact. I plan on writing at least twice a month, more if there's really something important(I don't want to overwhelm). Part of my life's purpose, I believe is to share the ups downs and lessons of someone living with Spina Bifida so I'll be talking about life.  Other times, I may discuss(prayerfully factually) thoughts, ideas about current topics from funny to mundane and yes even politics and faith. While I am a Christian I won't promise to be perfect, you may not like everything I say. I'm only going to post a few more entries to Facebook.  I welcome you to click the "follow" button or enter your e-mail address which then, I believe will notify you only when there're new entries. Should you choose to follow the blog and wish to comment, please feel free.  I ask you to be respectful and I'll do the same.  I don't mind dialogue but let's be open minded and respectful.

2019's been ok so far.  I've had some health concerns but they're slowly diminishing. My last testing will be in May for concerns about lymph nodes. Doing my best not to worry until I know there's something to worry about.  Like I said I work at the local Target.  Strangely I haven't worked since Mid January due to changes they made and they need to "figure out how to fit me back into the job" Given the weather and health challenges, I haven't worried to much but it's getting hard(financially and otherwise). Also, I haven't really heard of anyone else being shorted due to changes. I hope something works out soon.  Till then I'll work more on my Wedding Consulting plans.  OH I also have a blog for the www.wheelingweddingplanner.blogspot.com I hope you join me there to. Well, that's all for now. Night Folks!

Photos from the last few years

Friends, family and good times

 

 

Back To Blogging 2

All these things made me want to be cordial, yet cautious who I truly befriended.  Which in turn led to more days in which I'd wake up, realize I had no appointments, no one was looking for/needed me so I would sleep way more than I should.  Don't misunderstand, I had lots of nice times and gatherings with neighbors, I just didn't want to get in the middle of drama.  I had plenty of guests visit for Avon parties, family gatherings and friends over. I even competed with my sister in the Ms. Wheelchair Ohio Pageant that summer. I moved there not by choice, but I did my best to make the best of it. Out of homesickness, I went home as much as possible.

2013 turned to 2014 and things seemed to be moving along for me personally yet my dad hadn't been well for some time and in July he passed away.  About a month later, beloved comedian Robin Williams died unexpectedly.  Both were like gut punches and seemed intertwined because Williams movies had been a part of so many funny family memories. My dad left me a sum of money that was a blessing I didn't see coming. I was thankful that lots of financial burden would be off and entertained the notion of moving back to my hometown.  I prayed, checked availability at a place, and calculated whether I could really afford the expense now having more financial stability. I decided I needed to take the risk.  By years end, I was preparing to head home.  I was thrilled!  The place I moved to is another senior/disabled housing complex(really, truly the only type of place that has even close to adequate accommodations for the disabled). 

My apartment is way more spacious than I've had. Much bigger living area and bedroom.  Good space that meets my needs. I'm slightly more independent in the kitchen and have had a few memorable attempts at making food for friends, and several attempts at no bake cookies, bars, and desserts. After getting settled in, I felt more at ease moving forward with continuing education for Wedding Consulting. I decided on this as a career path because I've always loved all things wedding, have business experience and wanted to go with something I felt I'd stay with as long as I was at my other job.  I had already obtained certification from one school and felt it necessary to go further so as to become a member of The Association of Bridal Consultants. I became a registered member in October 2016.

While excited about meeting goals, I wasn't making money so I decided to apply at the local Target. The day of my interview I was all dressed and ready to go. And what do you know... a raining downpour!  My aide and I got me to the van with an umbrella but I still was drenched! I continued on, arrived early, and did my best to dry off and not be as much of a wet rat.  Long story short, I Got The Job.... After 5 Years Of Searching And Being Rejected I Got It!  Working there has taught me about how to work with and well... for very different distinct types of people.  Thinking about it makes me laugh. The end of '17 was rough due to many unexpected and often unexplainable issues with my van. Thankfully none of it got me fired. Since many of these episodes happened during winter months, while I was alone and oft times after work hours, I began experiencing things that I can imagine resemble PTSD type symptoms. Still kind of dealing with them to this day. Anger and fear are things I need to work on.  I'm just now feeling anything close to relaxed and certain I have reliable transportation.

All in all, I've survived and thrived through a lot. I hope to keep you up on what the future has in store. Thanks for reading, and we'll talk soon. :)



 

Back To Blogging

WOW Six Years! I can't believe it's been that long since I posted on here.  Browsing through some of my other posts, I see how things have changed. Lots of ups, downs, twists and turns. I'd like to get back to writing on here so thought I'd start off catching up.

In 2013, I was mostly getting adjusted to a new normal with my Interstim Sacral Nerve Stimulator. I can happily say that I'm going six years strong with it having approximately 80-95% success rate(that's saying a lot since I live with Spina Bifida and was told I probably would always have some issues) and lots less socially crippling. At the time I was about a year into unemployment and truly hoping that was the beginning of a turning point. While I was fortunate to be offered many interviews, I somehow never seemed to measure up or the company offering couldn't offer enough hours so they didn't have to pay benefits. It was devastating. I quit the job I'd been at for 18 after feeling like my back was against a wall.  This was a place that helped me get many starts in life and had a lot, in my mind, to do with my identity. Many other things happened, friends/family were moving or dying, and social connections(aside from social media) I had were being diminished. Finances were getting slim and it felt like walls were closing in. The day I couldn't balance my checkbook almost broke me.  It was obvious something wasn't right and saw my doctor immediately, I was diagnosed with depression and prescribed a low dose medication. 

On top of this, rent was getting high where I was living. I knew I couldn't stay and the one place in my hometown the was accessible for the disabled didn't have vacancies. Sadly, I had to move about 20 minutes away. My new apartment was an efficiency, if you don't know what that is it's about like a child's shoe box in which the kitchen, living, bed/bathroom And The Bedroom Closet seemed to fit all in one small space. Never in my life did I ever have to downsize so much(7 large garbage bags of cloths just in the first few months.) One of my first days there consisted of training a new home health aide, have both the cable and internet guys installing things and needing me to answer questions or give instructions all while the wheelchair repair guy was doing something with the chair.  It makes me laugh now, but at the time it was head spinning.

I lived in a senior and disabled housing development.  For as outgoing as I am, I sensed that not many people really wanted to embrace the newbie unless they wanted dish on the other lady from the complex my aide was working for. This made me want to avoid people.  I also came to realize it mattered which side of the complex you lived on.  One side thought they were better than an other and answered to this high and mighty lady who rode around on a scooter and thought she was just as much the manager as the actual manager.  She was referred to as The Mayor.  I wonder if she's still alive....??? I could tell all kinds of stories but I digress.

Hope at last?

In January this year, I came across a monthly newsletter from Robinson Memorial Hospital in Ravenna Oh.  The cover story was about someone who suffered from bowel incontinence and the treatment she underwent to hopefully to treat it.  Her story is so similar to mine in the symptoms she had and how they affected her life, especially the severity of the problem which eventually caused her to be home bound...just like me.  The treatment she underwent is called InterStim Sacral Nerve Stimulation which controls nerve signals from the brain to the rectal and anal sphincter muscles.  It's an implantable neurostimulator(pacemaker like device) that is placed in the lower back.  Leads (thin wires) from the device are connected to the sacral nerves to improve bowel control.  She spoke of how, just even during the trial period, her symptoms had greatly improved and she was almost completely back to her old life.  She decided to have the device permanently implanted and she Is back to her old life and planning new things.  I was stunned and excited at the same time since I Never dreamed I'd ever hear of such a possibility.

I thought, could this be for me?  Would it work even though I'm disabled?  I thought back on a lifetime of prayers expressed to God through tears, pain and embarrassment and wondered...is this the answer to those prayers?  I decided to visit my Primary Care Physician, Dr. Mineo to discuss it with him and get the needed referral for a consultation.  He knew of the therapy and spoke well of the specialist, Dr. Yuh.  He gave me a phone number, wished me good luck and asked I keep him up to date on how things were going and as always contact him with any other questions or concerns.  I went home and scheduled an appointment.

About a week later, I was in Dr. Yuh's office with my aide who graciously went with me to help make sure I asked all questions I wanted and understood all I was hearing.  He is nice, kind and very interested in finding solutions.  In order to understand my situation better, he wanted me to do a week long journal so he could get an idea of how severe my problem was.  He also wanted to do a colonoscopy to determine if I was okay health wise to proceed.

Let me tell you...I Never Wanna Do Another Colon-Prep As Long As I Live!  I made it through most phases of it til I had to do the Gatorade and Miralax mix. I drank so much I cramped, but I kept going thinking "I've gotta finish this, gotta finish this".  At one point, I looked at the floor and it was wet.  I went to my room to change and just got water everywhere...again, no clean space to sit.  Needless to say my wheelchair seat was ruined.  I kept saying to myself, this's gonna be the last Major accident you deal with, just a little while longer.  I finally got myself, my bed and my chair(somewhat)cleaned up and I laid down around 3a.m.  The procedure time couldn't come fast enough.