Tag Archives: God’s strength

April 26, 2014 · 8:38 pm

The Art Show

Last week, we–as a family–headed down to Cincinnati for an evening of fun. First stop was a run-around through Ikea (that place is like a corn maze!) with the intent of finding a reading chair for my room. The hunt turned out quite successful as we left with a small recliner-style chair loaded in the back of the suburban. It is a simple, but lovely black chair and it has already been well used! We also went to Jungle Jim’s–the coolest international market around! We all ventured to our favorite places around the world in search of goodies. My focus was the variety of teas: Papaya and Passion Fruit black tea from the Asian section and herbal teas from the England section–Raspberry Cream Caramel and Tangerine Almond.

We then headed out to the Clifton Cultural Arts Center for the art show in which I was a participant, with collaborating artwork and two of my own paintings. Although I barely missed meeting with the three girls that I had been in Skype contact with over the previous months, I did have a chance to meet the two professors–Jenny and Sarah–and one other student from their class. The collaborating watercolor cards (that I started) were not yet complete, so I look forward to seeing the outcome when the girls send them to me in the mail; the painting canvas, however, was finished and on display. Because I had only started the canvases, seeing the outcome didn’t feel like I had any part in the project, though I did. A very strange and new experience, because I still feel as though I make art thinking inside the box…a very traditional view of art I guess. IMG_4913

IMG_4912

IMG_4932 Jenny, me, Sarah

IMG_4916 My own paintings: Clematis in Full Bloom and Fire and Ice

As I ended viewing the art exhibits around the room, I had a chance to talk more with Jenny about the class, art experience and purpose of this particular show. I had noticed a theme: much of the art descriptions discussed around the area of cancer or other life-threatening traumas–the pain, emotions, questions, fears, doubts, hopes and dreams, survival. Jenny mentioned that she had encouraged the students to think deeply of these things and portray them–because we are all affected, whether you are the one facing the trials or it is someone else you know. Art is a medium to express these different side-effects of disease.

One art set was a participant project where cards and pens had been placed on a table. You were invited to write an encouraging letter to an anonymous adult cancer survivor or patient. (Read about full project here: The Mandala Project.) I locked my walker so I could sit at the table and picked up a blank card. At first I didn’t know what to say…I get a lot of encouraging letters, sometimes even from strangers, but here I sat speechless for a few minutes. I finally started just by saying my name and that I didn’t have cancer, but a rare disease with tumors. After my first introduction sentence, thoughts just started to come…

I concluded my note by mentioning strength, because, let’s be honest…whether it’s cancer, NF2 or another disease, any can initially wipe out your strength–physically, mentally and emotionally. I have been there. I still am there. And it is when you cry out in your uttermost weaknesses, that God answers in His fullness of strength…in ways you never anticipated, hoped or dreamed.

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.

Romans 8:26, ESV

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March 23, 2014 · 9:01 pm

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. 🙂

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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October 27, 2013 · 9:16 pm

Light

Today was refreshing. Encouraging. Restful. (I like naps!) A time of fellowship with a friend. And sunshine.

I am not implying that the sunshine alone turned my attitude in a 180 degree motion, but waking up to its light did lift the mood as I prepared my breakfast and sat down for coffee and morning readings. Last night, I ended the day pretty much in despair. I saw little hope. I felt sick in my stomach/intestines and getting ready for bed was in pain from the pressure in my neck.

Mornings are a better time of day for me; I am a morning person, though I can totally stay up late as well. But I feel energized in the morning and this morning was no different. I still woke to the same problems I fell asleep to last night, except the pain in the neck was gone and not as much pressure on the spine. My stomach issues are just something else anyway, but I did enjoy a light breakfast.

Finishing my coffee, I read the passage in Genesis where Jacob wrestles with God. I always find this passage interesting, because we see Jacob on his way to meet his brother Esau after fleeing from him years before because he stole Esau’s birthright and the blessing from their father Isaac. So now the night before they meet, Jacob is afraid. I read the Matthew Henry Commentary for this particular passage and it was discussing how Jacob stayed behind, alone, to pray…”wrestling” with the Lord.

And Jacob was left alone. And a man wrestled with him until the breaking of the day. When the man saw that he did not prevail against Jacob, he touched his hip socket, and Jacob’s hip was put out of joint as he wrestled with him. Then he said, “Let me go, for the day has broken.” But Jacob said, “I will not let you go unless you bless me.” And he said to him, “What is your name?” And he said, “Jacob.” Then he said, “Your name shall no longer be called Jacob, but Israel, for you have striven with God and with men, and have prevailed.” Genesis 32:24-28

I can’t say that I have ever prayed fervently a whole night about my fears…to be honest, this past week, I don’t even think my prayers got past the phrase, “I can’t do this…” Not even this morning’s prayers were very specific, but knowing that I can wrestle my inner thoughts, emotions and everything before God enables me to be vulnerable. I think of vulnerability like dependency = the sign of weakness. But it can be a source of strength–like my walker…it implies a tone of “handicap”, but it is a source of strength and stability when I walk. And today, I was able to get my walker to my car, in my car and drive to meet my friend for an afternoon coffee/chat. I don’t always need my walker or my cane as this morning, I was walking fine without them, but being independent, still needs dependent. I am finally accepting that my safety, when on my own, needs the stability.

Acceptance is rough. Although today, I found a ray of sunshine…of hope. I can live with these new changes, though I am still figuring out how, it is still difficult and I will still have melt-down days of despair, but today, light prevailed.

We ought to continue instant in prayer, always to pray and not to faint: frequency and importunity in prayer prepare us for mercy.

Wrestling believers may obtain glorious victories, and yet come off with broken bones; for when they are weak then are they strong, weak in themselves, but strong in Christ.

Matthew Henry Commentary. Biblegateway.com

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October 14, 2013 · 11:29 pm

The Secret Ingredient

During last weeks PT session, my physical therapist and I made small talk as she was helping me get into my new ankle braces (more to come on that story). I told her that my only weekend plans was to attend the Taming of the Shrew play with my sister at Cedarville University. (The play was AMAZING!) Because I had nothing else, she invited me to join her and her husband for the annual Sauerkraut Festival in Waynesville.

http://www.sauerkrautfestival.com/

They have attended for a few years in a row and she proceeded to tell me all about the different things they have there at the booths and the food. When she mentioned that they put sauerkraut in desserts too, I gave an “ew” remark but was assured you don’t taste it, it just adds moisture. Like a secret ingredient. I am not a sauerkraut fan, but decided it would be fun to tag along and experience the festival for myself.

Around these parts, every town has a few festivals special only to that town. For Cedarville it is Cedarfest held at Labor Day. The Chamber of Commerce writes:

Cedarfest is an annual Labor Day Weekend festival in Cedarville, Ohio; the “Home of Labor Day”. Cedarfest has something for everyone in the home of the Father of Labor Day.

http://www.cedarvillechamber.com/

It is a really fun-filled weekend. We attended different events last year–my favorite was the pancake breakfast served at the fire station. 🙂 Anyway, Yellow Springs holds the Art on the Lawn Festival and an annual Street Fair every October. Young’s Dairy holds different events in the summer and in Springfield (also during Labor Day weekend), they have an annual “Fair at the New Boston” festival, in which you take a step back into time. There are countless others–if you attended them all, your summer weekends would always be booked. But I think these traditions are fun and they provide opportunities for vendors to share their home-made products with people and it is a social time.

Yesterday was no different, except this was by far the LARGEST festival I have ever seen! Wow…crowded! It reminded me of back in the days where the markets were on the lower section of the city or right outside the city walls…full of vendors selling their meats, baskets or fabrics, with live chickens clucking around. 🙂 There were no live chickens in Waynesville, but the street was still a sight to see.

Although she was not there as a PT–it was kind of like hanging out with an aunt/uncle–I felt more confident with her being there as we took the walker I just bought Friday and it was my first time using it; she showed me the proper ways to get on the curb and such. I am so thankful that I had the walker, because it was not only great for balance as we weaved our way through mass amounts of people, but the seat also came in handy when we ate lunch and for the souvenir bags of homemade goodies.

The town was set up like a driving street. You walked in one direction on the right lane and the other direction in the left lane…traffic jams were ultimately inevitable. The main street of vendor booths was a mile long. We started on the side in which you climb the hill…so by the time we reached the other side and turned around, we were walking downhill. (Another time I was thankful for the walker!) We took our time…mostly “window shopping” but every once in a while stopping in a booth to look around at the products or test taste the food. We tried the sauerkraut salsa at one booth…my tongue felt like it was on fire! Thankfully, there was a booth from WI not too far down, so the delicious cheeses set that problem straight.

We had sauerkraut pizza for lunch and it actually was really good. If I was served the pizza at a restaurant without knowing what the added toppings were under the cheese, I would never think to say “sauerkraut” as an addition. They look like onions anyway. But this pizza was good–also had sausage and green peppers too. Towards the end of our two mile excursion, we stopped at a booth that had desserts (sauerkraut: secret ingredient). Among the options, I bought a brownie, a slice of pie, and a whoopee pie. Still seems strange, but the brownie reminded me of German Chocolate cake and I had the pie this morning at breakfast with coffee. I liked it better than the brownie.

Yesterday was a fun day. I am glad I went and glad I had my walker to help me as I really pushed myself physically in all that walking. By the time I came home, my body was ready to just sit; so I did. Even after a good nights sleep, my body today was feeling the effect of yesterday’s exercise–my body was just slower moving today. It took me all afternoon to get papers organized out of my file box for a meeting tomorrow; my hands were not cooperative. Then it took me over a half hour just to change the sheets on my bed–by the end, I was breathing like I had just ran a 5k.

My strength is not found in the cups of coffee every morning, nor in the stability of my walker–but by God’s goodness. His strength is no secret ingredient…it is the ingredient to my life and the reason I live through another day.

Strength will rise as we wait upon the Lord
We will wait upon the Lord
We will wait upon the Lord (x2)

Our God, You reign forever
Our hope, our Strong Deliverer

You are the everlasting God
The everlasting God
You do not faint
You won’t grow weary

You’re the defender of the weak
You comfort those in need
You lift us up on wings like eagles 

“Everlasting God.” Chris Tomlin.

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November 13, 2012 · 1:00 pm

Update!!

Hello everyone.

I would like to take a few minutes to update you on my health. My last MRI and appointments brought up a few questions that my doctor felt needed to be address further by a few specialists: 1) the pain in my right hand due to the tumors growing in the palm on the pinky finger side and 2) my vision as I was (had been at that time) seeing colors frequently during the day. Of course we all see colors, but this was like going from being outdoors in the snow on a sunny day with no sunglasses on to going indoors–that funny green color when your eyes are trying to adjust back to the dimmer light. That is the best I could explain it, but they knew what I was talking about. So appointments were set on November 1st to see a doctor on the Pain Management team (for my hands) and a neuro ophthalmologist about my eyes.

The doctor concerning the pain was very nice. He reminded me of Mister Rogers. 🙂 He listened to all my pain problems and the conclusion came to that there is not much that can be done about the tumors in the hand, except keeping the pain down so that way I can still use my hand as normally as possible without cringing in fear of huge pain every time I go to open a door or pull out a chair or squeeze my shampoo bottles. I have already been on a pain medicine for a while now to help with the pain spasms, but I was given another prescription for a different pain medicine to help with these new different pains. The plan is to see how well this new medicine works on helping my pain (I mean it won’t all go away, but if it keeps it down so I can function that is good) and see how tired it makes me (I also don’t want to be a walking zombie. Been there before, not fun!) Next time I have doctor appointments, if I am not satisfied then there are two other pain medicines to try. So that is all very hopeful. 🙂

At my eye appointment, there were several things that we discussed. For one, my eyes were extremely dry and scratched. So I started eye drops to help with that. 🙂 And two, after they dilated my eyes, they found that my optic nerves were swollen. So, considering my case, the doctor said it is a possible many things, but most important: there is extra fluid in my brain and something is putting pressure on my optic nerves. Then it all gets complicated from there…you don’t know what tumor(s) are pressing on the optic nerve–it could be from the any tumors in the brain or if it could be from the tumor in the spine at the C-3 to C-7 area that is causing pressure and maybe blocking the fluid flow…many different causes. The most important thing was to get the excess fluid out so my optic nerves go back to normal and thus, I stop seeing excess floating colors throughout the day.

I started this medicine that helps soak up the extra fluid in the brain. I already notice a big difference! My eyes are doing much better! I have not seen much color since I started it–only one or two times compared to seeing it everyday all day long like before. The main side affects of this medicine is that it would effect the way carbonated drinks taste…they would taste more metallic. I totally forgot that at lunch last week and pulled out a Cherry 7Up to go with my lunch. I took a sip and about spit it out. I was like “Ugh this is so nasty! Tastes like metal!!!” LOL. I had to throw it down the sink and drank chocolate milk instead. Not drinking any carbonated drinks for a while is not that bad for my diet anyway, so no harm done. 🙂 I go back December 5th for an eye check-up.

And lastly, something that has come up that I have not discussed fully yet with doctors, but I am having much tenseness and pain in my neck and shoulder areas of my back. I think it is due to the extra pressure on the spine from the tumor that had more fluid shown in the last MRI. The new pain medicine has been helping relieve some of that pain. I have to watch my posture as I have been bending more like a person with osteoporosis with my neck strained out as standing up straight causes pain. My parents and I sat down and got a few things from different websites to help with different issues I am struggling with in maintaining independence. All these things are for people who live with chronic pain and weakness. Mom found a rice pad jacket, and it has been so helpful. All I had before was a little 4×6 size pad that I used. The jacket helps release some pain and tenseness in my shoulders. It is comforting. We found some silverware to help me for when I have to cut things, as gripping silverware now really hurts my right hand. Dad helped me find soap dispensers that I can use for my shampoo/conditioner when I shower. We found a device that helps me open my gas tank (right now I use a pair of pliers), a device to help me squeeze my eye drop bottle so I can put my own eye drops in, and I found big pens to write with at the Dollar Tree. All these things out there and available to help maintain independence and I never realized it.

I told my mom the other morning that I felt this time with these changes in my body, we did something about it. Not like we didn’t before, but this time, we took action to find ways to help get around the obstacles. And it was exciting. 🙂 And just the thought to know that I am not alone in this. I may be one of few that has NF2 but there are so many different factors and diseases that lead to the same side effects or weaknesses. Someone has been down this road before me, because these things are available for my use. That is such a blessing. My ten years are coming up in just a few days–ten years ago when I first found out the news that I had NF2. And I thought I was going to die. Now I see, God has only made me so much stronger by His strength. I really can’t explain what I am feeling right now about it–I’ll let you know in a few days. 🙂

~

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