Tag Archives: raising awareness

May 31, 2014 · 1:10 am

NF Awareness Month

Well, it came and went–May, as I forgot and was reminded yesterday–was NF Awareness month. It was also Autism Awareness month. I don’t find it necessary to tell you facts or stories of NF–you have already read my blog entries. So, I will end this NF Awareness month with something different–none of the talk, such as, “This is a side effect of medicine or tumor function;” But talk of living life with NF2–because, I will tell you plain, it has, is and will continue to change my life.

Once in a conversation with my friend Jess, we discussed our thoughts and feelings about the topic of researchers finding a cure for our disease. I thought about it for a long time and finally responded to her email, saying that I cannot imagine life without it. Please don’t consider me a strong person, because if anything, this disease knocks you down. There are more moments were I detest my own body, wishing that I was something more rather than being thankful for what I have–in other words, as my body continues to unwind, I feel left behind.

Yet looking back at the road thus far, I am aware that life has been filled with divine moments. Moments where God met me in my lowest state and helped me back to my feet, never leaving me behind. And so life continues–to the end, which is the beginning of Life.

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

Revelation 21:4

PS. I believe that God has given doctors and researchers the skills, resources and knowledge to help individuals suffering with illnesses, such as myself. Although at the current moment, there are no treatment options available for me, I still desire to walk with hope in the Cincinnati NF Walk, June 22nd, and support the further research of NF, along with those persons in which the research impacts through results, such as new treatments. If you would like to donate for this cause, there is still time: Team A Mile in Mel’s Shoes

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June 24, 2013 · 6:55 pm

Team: We Walk with Mel!

Dear Family and Friends,

Galatians 6:2 says, “Bear one another’s burdens…” and yesterday was another example of how you reflect this verse in my life as I walk with NF2. DSCN2250

I was never expecting to raise a lot of money, but through your generosity, I was able to help contribute over $800 to the NF Walk cause: research. As a whole, the Cincinnati NF Walk raised a few hundred d0llars over their goal of $25,000!!!

Maybe I have not talked about it as much as I should (because to be honest, I had been putting myself in denial of reality), but it is no secret that I am running out of options for treatments. Even the steroid treatments I am currently on will not last forever…only God knows the timing of it all. So yesterday when my sister asked why I was walking, I told her I was walking to help raise money for research and then after a pause I said, “And just because I can.”

I can walk! And I think I should get into a praise habit and thank God every morning when I get out of bed, because it is only through God’s strength that I still can. Yesterday was not an easy walk. In fact, it was much more physically enduring than the Women’s Center Walk last month or even my fall off the treadmill a few days ago, but the truth of the day: I was there, because I can walk!

But even though I can still walk, I would have never made it through the 2-mile trek alone. I consider you all on my “team,” but I know everyone who wanted to be there could not all be there and thank you for your prayers from afar. I did have a team with me though: (L to R) my younger sister, my aunt and uncle from NC, and my oldest sister and brother-in-law. Together they helped make my day both a fun one and a successful one.

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As we got started, we were first welcomed by Storm Troopers and bounty hunter from Star Wars. Being a fan, I thought it was hilarious they were there acting like crowd control and took a picture with them.

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As you can see, there was quite a good turnout of walkers. Sadly though, we did not get to talk to hardly anyone else there, because by the time I changed my tee shirt and we did our picture with the signs, the walk was about to begin. We were able to talk to one family that had NF1, only for a few minutes. They were very nice. DSCN2249

Before the walk officially began, they wanted a big group picture–which should be uploaded on the CTF website within a few weeks. So, up this huge hill we went and as long as you could see the lady with the camera she could see you. Then the walk started (thank you David and Uncle Jim for helping me get off the hill!) 1058790_813723071694_1175541122_n DSCN2253 DSCN2254

We stopped often so I could take a drink and catch my breath. It was a lovely day but a toasty one!! By the time we got half way, I felt so tired (due to heat, not enough water intake and not a great breakfast to jumpstart my day)…that and my left foot was achy! Combination of bad balance and the path tilting slightly to the right, my left foot was feeling the weight!

The NF Walk took place at the Sharon Woods Lakeside Lodge which had at the half way point an area with bathrooms and picnic tables in a shaded area. This is probably why I came in last, because we stopped there and I was able to eat an apple, which greatly boosted my energy to finish no matter how bad my left foot felt. DSCN2258 DSCN2256

There did come a certain point when I started to get really wobbly even with my walking sticks, just from being fatigue. I also find that I could not get much conversation in as turning my head to the side while walking makes me wobble too. So, my aunt suggested I forgo the rod and staff and use their arms! It helped me forget about my feet and I got to get some chatting time in too (between catching my breath!) 1060338_813741854054_844995300_n

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And I finished, even if a bit unstable on my feet! 🙂

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Instead of joining the picnic, my aunt and uncle treated us to a delicious lunch at a local deli. 🙂 They left afterwards to head home and the rest of us made our way back northward, stopping in Lebanon for ice cream at a place called Double Dip. If you are ever in the area, it is worth your dessert appetite.

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…

I just wanted to say thank you again…from the bottom of my heart for the love, support and prayers that you have shown me over the past ten years and this week in raising funds on my behalf for NF research.

God has richly blessed me with the abundance of family and friends and I can truly say, “I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now.” (Philippians 1:3-5)

~ Mel

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June 21, 2013 · 12:44 am

Thursday’s Terrible Tumble

Two are better than one, because they have a good return for their labor:
If either of them falls down, one can help the other up.
But pity anyone who falls and has no one to help them up.

Ecclesiastes 4:9-10

I wouldn’t call it ironic, but yes, I did read this passage of Scripture in the early morning hours with my cup of coffee.

The day seemed to start so typical in routine. Awake by 7am-ish, make a cup of coffee, feed Muffy breakfast, watch a deer eat the farmer’s soy beans, eat my own breakfast and morning readings. This morning, my intent was to get to the gym for an exercise before coming home to finish a few lingering projects. I should stop planning my days.

I leave a note for my sister that I headed to the gym with a salutation, “Be back soon, xo.” I had used the bike yesterday, so today I wanted to walk two miles in preparation for Sunday’s NF Walk in Cincinnati in corporation with raising awareness and funds for research with the Children’s Tumor Foundation. We have known about this for months, but I was not fully interested in taking part of the event until I participated in the Miami Valley Women’s Center, “Walk 4 Life,” in May. Shortly after this, I emailed my family to see if they were interested still in the idea, as I would only be I interested if someone walked with me. I would not walk again by myself. Although my parents would be out-of-town that day, my sisters committed to the walk.

So, taking my momentum of excitement to the gym, I decide I can walk the two miles better in a straight line than 16 times in a circle around the indoor track. I go for a treadmill. My thoughts betrayed me.

I was doing just fine. I actually have no idea what went wrong. I am a symmetric person (the accountant in me to balance like an equation), and when I exercise it is no different. I warm up for five minutes then do a faster walk for ten or twenty minutes then cool down for five minutes. I was walking slower than an average person’s stride for the first five minutes, clutching the handle with both hands. I barely notch up the speed to get my legs moving and I don’t even think it was but a few minutes later that I just came down.

It was slow motion: my nose planted in the middle of the handle bar and I try to pick myself up and regain balance but then my feet just buckle from underneath me and down I go…hitting my mouth on the way while belly flopping on the moving tack. I very ungracefully glide off and somehow landed on the floor sitting up cross-legged. I had lost my glasses on the way down so I can’t see and hold my nose and say, “Ow. That hurt.” Then I realize I am bleeding from my nose and considering my fall plus blood thinner pills–well, the equation was very messy and did not balance.

Within seconds I had at least from what I remember, four people at my side. One gave me towels for my nose, another had my glasses and two finally helped me to my feet when I was ready. The lady there helped me to the bathroom to wash my hands and arms and then when I was a bit clean (still bloody nose), I sat out at the tables and they did paperwork. They were very concerned and helped me call my sister (we woke her up) and she came to pick me up.

The rest of the day goes from there…while I sit on the couch with ice on my already blackish-blue nose, Marcia is making all the necessary phone calls in order to figure out what to do next. My doctors at Children’s wanted a CAT scan of the nose and neck to ensure nothing was broken but most importantly the bleeding factor, even though I was not showing any signs of something drastic. We ended up leaving twenty minutes later for the ER and spent the next few hours there. Thankfully, my nose is not broken and nothing wrong otherwise but a low INR count.

The point of my story is not necessarily my poor decision to decide to walk on a treadmill with weak legs and ankles (and not attaching the safety stop clip to myself either), but that I would have not made it through the day without the kindness and help from those around me or those on the other end of the phone with my sister. Even if I did not have NF2, I still believe that after a tumble like that, I would have required a helping hand.

This is why I am excited to be part of the NF Walk on Sunday–because I can be a helping hand in bringing hope to others just as others have done for me.

We can’t do everything, but can we do anything more valuable than invest ourselves in another? Elisabeth Elliot

For more information:

My team, “We walk with Mel!”:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1044487&supId=373310036

NF Walk in Cincinnati: http://ctf.kintera.org/faf/home/default.asp?ievent=1044487&lis=1&kntae1044487=AC40628269E94A3193B4E32ACD2CA733

The Children’s Tumor Foundation: http://www.ctf.org/

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