Monthly Archives: November 2012

November 24, 2012 · 3:40 pm

Thanksgiving Lessons 101

This Thanksgiving was a very special time. We celebrated my Grandpa’s M.’s 90th birthday with a surprise family reunion. And he was surprised!!! 🙂 What a great time it was to have the family here. I just don’t think it could have been any better!! Dinners ran buffet style through the kitchen; we somehow got all of us to fit together in the same dining room area/hallway so we could all eat together; we enjoyed chatting, pictures, playing games with the kids; and most of all, we enjoyed the precious time spent with Grandpa and Grandma. 🙂

Grandpa has taught me so much over the past years, but these are my top favorites: Don’t put your elbows on the table and collecting coins is a cool thing. Grandma taught me that it is okay to eat dessert first (you only have one life to live) and writing letters brightens the day. And together they taught me the most important lessons of life: Give and you receive, trust God in all circumstances, and to honor the ones you love as you honor God by doing so. Grandpa and Grandma have been married for 66 years. And they still love each other, care for each other. It is such a testimony. I have been blessed with not one set of grandparents, but three who all have shown me the same lessons of faith and love in their own special ways. Each give me a glimpse of something in my life that I can improve on. During the family reunion, Grandpa yet again showed me a life lesson, but this time I don’t think he realized it.

I must say it was refreshing to not be the only one with hearing aids. I actually had some good conversations about hearing aids with my uncle. It was fun for someone to “understand.” But Grandpa showed me a different way to understand the communication problems that come with lack of hearing. The first night we all were together–after the “SURPRISE!!!”–things were still on the energetic level and it was loud. I could not hear anything but the constant vibe of the family chatting and laughing murmur in my ears. That might be hard to understand, but it is hard to explain. Anyway, after giving my hello and hugs, I went over to sit by Grandpa. I can’t speak for him, but I wonder if the murmur was the same for him–either that or it was just still complete shock that we all were there. 😀 We exchanged a few sentences, then just sat quiet. I noticed as he looked around the room that he was just all smiles. He was not even engaging in any conversations, but still had joy in his face just as if he were chatting with someone right next to him.

I did pretty well at Thanksgiving. I had my hard moments with hearing but for the most part I did well, just hopping from one conversation to the next. It was last night when my frustrations reached a peak. After the extended family left, we decided to play Mexican Train (dominoes game). I got the rules down and we started to play. Then things started changing like “you have to cover the double” and then I said, “I don’t want to cover the double, I want to play here.” That kind of started it. By the next few rounds I had one question about the trains and doubles that I was trying to get an answer for, and everyone was telling me answers at the same time. Finally, after much frustration, we got it quiet and my brother-in-law restated why we had to put the trains down if we can’t cover the double and it clicked. I finally got it.

I am not blaming my family…they are not at fault (although we should work on the talking at the same time part). I could have not raised my voice in frustration of not understanding but because often in loud conversations I can’t get my voice heard, I get so used to shouting louder than I should just to be heard. I have always have had that problem. I just want to be heard. But Grandpa’s approach was the complete opposite. He does not shout to be heard, but when he speaks it is sincere and it is heard. So as the family left this morning I reflected on the past few days and how I see myself every time in these situations. I speak loudly before I try to lip read (which is my version of listening); I get angry when I cannot be heard and frustrated when I cannot hear or understand or know what is going on. It is a constant battle, but it is not for Grandpa. He showed me that you can live out James 1:19 and still enjoy life as if I had regular hearing.

Know this, my beloved brothers: let every person be quick to hear, slow to speak, slow to anger.

I have tried so hard to live out this verse, but I think it is now time for a new course of action: Be more like Grandpa, because Grandpa is an example of Christ’s love and humility. So thank you Grandpa for the lesson you taught me while you were enjoying your birthday festivities. I love you so much. 🙂

More to come…

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November 18, 2012 · 1:00 pm

Blessed.

Rachael Lampa and I are about the same age, yet our roads in life have been quite different. While I was still living the era of braces and junior high drama, she had been selected from a music festival to start a new record. Her “Live for You” album was the first cd I ever owned. Her voice was so captivating that I would play songs like “You Lift Me Up” or “Day of Freedom” and pretend it was me singing. (Yes, I know, not typical of junior high, but in my defense–it was always my dream to sing on stage with a lovely, breath-taking voice). 🙂

My favorite song on the album is her hit, “Blessed,” written by Cindy Morgan and Ginny Owens. Rachael sings with the organ sounding keyboards and the choir. Before you know it, I have tears in my eyes and goosebumps. Everytime.

I thought of this song as I read Psalms 139 the other morning. Here are verses 14, 17-18:

I praise you, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well.

Your eyes saw my unformed substance; in Your book were written, every one of them, the days that were formed for me, when as yet there was none of them. How precious to me are Your thoughts, O God! How vast is the sum of them! If I would count them, they are more than the sand. I awake, and I am still with You.

God saw before I existed that I would walk this journey of living with NF2. He orchestrates blessings that give me strength to endure and persevere. He blessed me with a loving  and sacrificial family, caring friends, prayer warriors, and kind strangers who all in their own way give me a glimmer of hope on dark days. God did not thrust this on me and walk away. He promised to walk beside me to the end of my days. “Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” (1)

With Thanksgiving just a few days away, I am so thankful for all that God has given–even relatively stable health for the past ten years. It is so neat to remember where I was when I first started, and see the journey so far. Pretty special, even if that means that the physical things in life have been taken away. But I am still here. 🙂 “For the worst and all the best, I am blessed.” (2)

Happy Thanksgiving week everyone.

PS. I found this acoustic version of “Blessed”–I hope you enjoy listening to this very special song. The website listed after is the lyrics–(and her name is spelled wrong, LOL).

http://www.youtube.com/watch?v=xXjyuNBWujM

http://www.songlyrics.com/rachel-lampa/blessed-lyrics/

References

(1) Joshua 1:9, ESV

(2) Cindy Morgan and Ginny Owens. “Blessed.” From the album, Live For You, by Rachael Lampa. Word Music, 2000.

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November 17, 2012 · 11:17 pm

The Basics.

Hey guys.

Thought you might be interested in my new items that will help me maintain my independence as much as possible. 😀 I explained them in my last blog post, but I thought pictures would better show how they work as they are even a bit new for me. Why don’t we start as if I get up in the morning. I brush my teeth and take a shower.

The soap dispensers hold my shampoo and conditioner. I am trying to finish the bottles of my old ones. When they are done, I will just use the dispensers. They give me quantities of shampoo as if you were getting soap at the sink. 🙂 I have to squirt it a few times. And the handle at the right is what helps me get in and out of the shower. It was also what my arm was drapped around when the blood clot hit. Very sturdy!

I also use eye drops to help the dry eyes. I put this on the bottle today and came in the kitchen saying, “With the sound of thunder and speed of lightning- Look! In the sky! It’s a bird, it’s a plane, it’s Super-Tears!!!!” Needless to say, I think even Superman would have approved. 🙂 Because I don’t have the finger muscles to push the bottle, the clippers do it for me:

The rest of these things are random for when I need them. Such as when my back has the tense, sharp pain feeling–I heat up the rice jacket. It is flopsy (word?) but very comforting!

I might also need to cut open things in the kitchen, such as the bag in the cereal box or the covers to my tea. I also like to use paper to make special cards. Using real scissors gets difficult. It is not so much closing the blades part as it is having the thumb strength to reopen them. So, we got these new scissors that bounce back for you. All I need to do is practice, because I can’t cut in a straight line anymore. This might also be from not having the grip in the left hand to hold the paper still, but nonetheless, these scissors are great!

I decided that although I do not need this device right now, it is good to practice on. There might be a day when big pens just might not be what I need when writing. So, we found this neat device that makes your hand sturdy. It is hard, because I have always set my pens against my ring finger, and this device does not. Old habits are so hard to die. I hope to practice with it here and there to get used to it. I want to be able to at least do my signature the same with it. 🙂 That is my goal for now.

I have not had to use this YET, but it will probably be used very frequently: say hello to my new gas tank opener. 😀

This will look so much more appropriate than a pair of pliers. 😀 And lastly, what I love the most–to eat. These new silverware are fantastic! The bigger rubber handle allows me to grip the utensil like before but without hurting my hand. I have also noticed they are not ones for proper etiquette. At dinner tonight, the already used knife resting at the top of my plate kept falling off. Hmmm, I have to practice different ways to place them.

Of course the knife looks good resting on the plate in this picture (below), but that is because it was not loaded with gravy. 😉

We made our order from The Wright Stuff. Here is their website if any of you are interested for more information: www.WrightStuff.biz

What do you think? Any favorites? 🙂 I am adjusting well to these and really, they are for the better. I am not the first, nor the last to use resources like these. I am so thankful they are available for my use and independence. Now, if we can just work on the compression stocking part–I think that would just about cover all my problems. 🙂 Night everyone.

More to come…

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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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November 12, 2012 · 7:30 pm

Reminisce

Today, I met a wonderful lady. She and Mom know each other, but today was my first day meeting her. She was so full of life and wisdom. What was probably only meant to be a small business chat, ended up with cups of Egg Nog, my peppermint tea and hours of talking, encouraging and sharing Scripture. She showed me the fullness of God’s mercy, goodness and grace. I sat in my spot on the sofa and felt blown away, like marveled, at her testimony. I knew God sent her today. For me.

Yesterday I got in a little quarrel with my sister. She left to go back to school and I was just about to eat lunch. I was so upset at myself, I just went to my room and cried. I ended up falling asleep until the afternoon. But before I fell asleep, I told God that I can’t do this anymore. I don’t know what I am doing in life; I have no friends here my age, no job, no passion and most of all, I knew I was lacking in my walk with God. How could I face the mountains without Him? Just so much has happened over the past week or so, and I felt like I am in a flood. Just drowned in self-pity, pain and confusion.

God showed me again today…no matter how low the valley gets, there is always hope, because He is with me. He loves me and wants to teach me about His goodness, mercy and grace during my trials. I just was a loss for words today as she shared her story. Unthinkable things, circumstances and choices in her life. Yet, here she is saying, “Your will, not mine,” and truly has the God-given passion for reaching out to the hurting and the lost. God taught me so much in just a few hours, I felt like I was taking a college class. 🙂 What an amazing day!

Today was a cloudy and rainy day, but I felt rays of sunshine in my soul.

Though the fig tree should not blossom,
nor fruit be on the vines,
the produce of the olive fail
and the fields yield no food,
the flock be cut off from the fold
and there be no herd in the stalls,
yet I will rejoice in the Lord;
I will take joy in the God of my salvation.
God, the Lord, is my strength;
he makes my feet like the deer’s;
he makes me tread on my high places.

Habakkuk 3: 17-19

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