Tag Archives: hymns of faith

What I Lean On

“Help me. Help me.” I blurt out in a semi-panic but soft-toned voice. I knew my sister, Melissa, was behind me with my walker and bag. I had just taken my first step down the stairs leading to the garage; I felt my body starting to lean backwards in off-balance mode. The last thing I wanted was to take another tumble, thus, my cry for help. Melissa helped me rebalance and I slowly descended. At the bottom, my walker is reopened and I place my bag in the middle compartment. Now holding to the handles, I stand and wait for my ride to church.

I haven’t used my walker in the house since around Thanksgiving. Even my cane I have left in the garage and have only used these two walking assistants when going outside the house to town, church, errands or meeting friends and social gatherings. That is until this past weekend. I first started with my cane. I noted at the beginning of last week that getting up to use the bathroom in the early mornings could sometimes have me feeling off-balance. I never used my cane, but just had it resting against my bedside for “just in case.”

Then I fell. Friday afternoon–I was setting up my painting area for a Saturday morning, “Coffee, brunch and painting,” time with ¬†a friend. I don’t even know technically how it happened, because I don’t remember twisting my ankle, but my tumble forced me to my knees. If I had “snapped forward,” I would have just landed harder on my hands. But my fall sent me on backward whiplash; my legs being folded under me, I crunch down on my crooked feet. As I regain composure, but in pain, I try to shift my feet out from under me but find myself underneath the table (that is the part in which I don’t understand!) I knew I was going to have to have assistance getting up off the floor, and since no one came downstairs yet to check on me, I pushed my Lifeline button. ūüôā

Friday’s fall resulted in a very sore left leg: a torn ligament in the knee. It is really the last thing I wanted at this time. I already am struggling with increasing frustration at my right hand and just the mental processing of being slow. Now I use my walker more regular in the house–discussion today also mentioned that it might be time to restart my AFO braces (at least the right foot while my left leg slowly heals.) That decision alone will be something to pray for peace about–my choice to end wearing them, and PT sessions, in the Fall was primarily to live without them until I needed them to walk. I can still walk, but it is only by God’s divine power that I still can.

I see myself weakening and I want to be strong; I force myself to persevere, but need strength to lean on.

What a fellowship, what a joy divine,
Leaning on the everlasting arms;
What a blessedness, what a peace is mine,
Leaning on the everlasting arms.

Refrain

Leaning, leaning, safe and secure from all alarms;
Leaning, leaning, leaning on the everlasting arms.

Words by: Elisha A. Hoffman

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Filed under Adjusting to NF2, Uncategorized

The Book: “NF2: Our Journeys”

Question: Where has this year gone? Here we are in July already! Stop and think for a moment on all that you have done in the past six months. If¬†you are like me, you¬†may be wondering¬†how you are going to write your Christmas card this year;¬†thankfully, we still have another six months to figure that out. ūüôā

As I reflect, there is a list of major events on my calendar: blood clot, hospital trips, Physical therapy, paintings, a few visits to see grandparents, Spring Break vacation, books read, made new friends, turned another year older,¬†overcoming new physical limitations, visited¬†my sister a few times¬†in Columbus and Megan visited from¬†Colorado…and last but certainly not least:¬†I wrote¬†about my life¬†(limit 1500 words) for this book NF2: Our Journeys.

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January 2, 2o13–a representative from The Children’s Tumor Foundation contacted me through my blog in response to¬†a letter I had sent to the foundation at the end of the previous year. Three days later, she contacted me again. The Children’s Tumor Foundation works alongside a foundation in the UK called, Children With Tumors. There was an opportunity for those with NF2 to participate¬†in this¬†publication (sharing their story)–all started by Jessica Cook who also lives with NF2.

January 9, 2013: Unexpected blood clot.

January 10, 2013: In hospital and I get an email from Jess. This is where it began.

I can count on both hands how many people I have known/met personally that live with either NF1 or NF2. Yes…less than ten people. It was only when I started this blog that my social group of “meeting” people who live with NF2 expanded slightly. When Jess first emailed me, it was about the book. I had no idea over the next five months I would not only get to be part of this amazing opportunity to share my journey of living with NF2, but also make a new friend in the process.

January and February were crazy months of doctor appointments, physical therapy and painting. I had until the end of February to write my story. Not that I procrastinated, but a combination of all taking place those months and just a lack of not knowing what to say, I finally forced myself to sit down a few days before the due date and write. I submitted it the day the rough drafts were due. By this time, Jess and I had been emailing back and forth and she responded to my draft with praise saying that it was what she had expected. That put my nervousness at ease.

My story was edited (spelling, grammar, punctuation) by Jess and a few of her friends and then sent back to me to read and review. I asked my cousin, who is known for her exceptional editing skills, for help on a few sentences and wordings–then satisfied–I sent it¬†back to Jess¬†saying it was final on my end. I picked my¬†“author¬†name” for the introduction and submitted¬†a picture. (Muffy¬†is famous! ūüôā )¬†By this time, I now had told my family about Jess and the¬†book; I had¬†mentioned it to my doctors in Cincinnati and wrote about Jess to my grandparents. Just talking about it all was exciting!

Getting to know Jess over the past six months has been both encouraging and inspiring. We never started our emails from the past (full life story)…we started right where we were at the moment. Sure, past events have come up in our conversations,¬†such as,¬†physical changes we have endured, emotional battles we¬†have overcome (such as isolation and self-image struggles) and how living with NF2 has broadened our life’s story in ways unimaginable.

Jess’ work in the UK through her social advocacy website and group–Can You Hear Us?–has inspired me to be connected. I have been reading other blogs from people living with NF2 and¬†(though good intentions) need to make a better effort to seek out the Deaf community here. It has¬†also helped me to seek out the¬†possibilities¬†when life hands you disabilities; I¬†believe¬†God placed this book opportunity in front of me¬†for a reason–because these past six months, I have seen my body change and¬†weaken faster than the other nine years of living with the disease combined.

I say it often, but it is the truth: It is only by¬†God’s strength and mercy that I can still function what I am. And He has shown me¬†in abundance the¬†past few months¬†that¬†what¬†I currently struggle with physically is not the end–there is still more to my story waiting to be told. There is always room for hope…

My story: I seems to be a re-occurring phrase over the past few weeks.¬†A few days ago I thought of the hymn “Blessed Assurance.”¬†I think Fanny Crosby wrote what I feel about my story best:

Perfect submission, all is at rest
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.

This is my story, this is my song,
Praising my Savior, all the day long;
This is my story, this is my song,
Praising my Savior, all the day long.

– – –

To buy a copy of the book:

http://canyouhearus.co.uk/nf2-book/shop/

(Shipping is included in the book price and PayPal converts the total for those ordering from the United States.)

For More Information:

Cook, Jessica (producer). NF2: Our Journeys: A collection of inspirational stories written by people with NF2. Lavenham Suffolk, UK: canyouhearus.co.uk, 2013.

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Filed under Adjusting to NF2, Books and Movies, Hospital Trips, Muffy, Paintings

Thursday’s doctor visits.

And it happened. May is now officially over and June has just begun. Crazy to think!

So I thought I would just recap from where I left off…Wednesday evening:

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest of the year, but as I gather my list of inefficiencies, I remember that when I can’t…He can.

I wake Thursday morning around my typical time, 6:10 a.m. This typical morning time started about a month ago…steroids can cause change in sleeping patterns. Lucky me, I get¬†morning shifts where I see the sun come up and drink fresh cups of coffee at breakfast.

Thursday was no exception except our coffee was on the go, because we had to get down to Cincinnati for my doctor appointments. The day turned out to be relatively fast appointments and we even made it home before 4:30 p.m. which is a record breaker!

I came prepared with my list of questions and observations of things over the past three months. The doctors said I am doing well for the condition that my body is living. And considering the results of my MRI, that prior sentence is an answer to many prayers daily on my behalf.

The MRI of the spine showed stable, which is not what I was expecting, because it usually has more liquid in the tumor at the base of the neck growing in the spine. I asked if there was more fluid in this tumor, but the measurements did not show so.

The MRI of the brain is what surprised me. It showed tumor growth in the meninges areas, including the 5th nerve, etc. I asked out of curiosity if my doctor had a count of how many tumors were growing. He did not know, but estimated about 80% of the tumors in this meninges area were growing; a few as much as 3-5mm and that is the most growth I have had yet. The tumor on the left acoustic nerve has also grown. When I mentioned that I had more ringing and my hearing test results from last week, it made more sense of why my hearing has decreased in that ear rapidly over the past two months.
Because I have had a lot of new side effects, I asked if the tumors from the brain are the ones effecting the rest of my body. It seemed strange to me that this¬†could be probable. I¬†guess I don’t know enough about the brain.¬†Anyway, my doctor¬†said that between the tumors in the brain, the one in my neck and all the ones in the spine down lower at the abdomen–it is extremely difficult to decipher¬†which tumors¬†are causing the problems.
My initial¬†thought was¬†that they would increase my steroids, but because I have been experiencing certain¬†side effects, they are keeping¬†me on the¬†same dosage I had been taking already.¬†The steroids are just to help keep the pressure from the tumors down, but don’t have any¬†control on the tumors as I also have thought this whole time.
Right now, I do have a chemo treatment option. It is also the last option at the moment that I have as far as studied/approved treatments. It is an oral treatment, so I would take it by pill. We went over the possible side effects again. They seem tolerable if I would get any but most effects deal with the blood cell counts and high cholesterol. I could also get a rash, swelling in the face, sores in the mouth (things like this.)
Thursday morning, my reading in Oswald Chamber’s My Utmost for His Highest talked about complete trust in Jesus: “Jesus Christ demands that you risk everything you hold on to or believe through common sense, and leap by faith into what He says.” I didn’t make my decision on this chemo treatment on Thursday. In fact, I still have to¬†pray¬†more about¬†it and make sure that this is¬†what God wants me to do.¬†But one thing is for certain–I feel God¬†had prepared¬†me for¬†that day, the news, the treatment possibility.¬†I had a¬†peace that I¬†normally don’t feel at doctor appointments.
I can’t say that over the weekend the peace remained as strong as what I felt on Thursday. There were times of doubt, fear of the unknown, hard questions to ask myself.¬†But when the time comes for my decision, I want to know the fullness of His peace like I felt on Thursday. The¬†peace that passes all understanding¬†and¬†say, “Whatever my lot, thou hast taught me to¬†say, ‘It is well! It is well with my soul!'” (Horacio G. Spafford, It is Well with My Soul. 1873.)

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Filed under Adjusting to NF2, Books and Movies, Hospital Trips