AbleThrive

I’ve been lucky enough to become friends with Brittany Martin over the past few months.  She is the founder of AbleThrive (http://blog.ablethrive.com/about), an online support network for those with disabilities, their friends, families and so on.  This is still relatively new and constantly growing but even so, I think it’s a great source for those of us living a disabled life!

Brittany has asked me to contribute to the site by writing a weekly blog.  Hopefully the readers find this interesting and sometimes helpful.  I’m personally very excited and thankful for the opportunity!  Here’s a link to my first attempt!

http://blog.ablethrive.com/post/100081523604/4-tips-to-dating-online-with-a-disability

 


ScentsyHaley Burns is hosting 2 catalog party fundraisers for Aaron’s Journey: Scentsy & Gold Canyon Candles. Both parties will close on October 27th!

For more information about these fundraisers, go to the event notification on Facebook. You do not need to be a Facebook member to visit this page:

https://www.facebook.com/events/357056304452660/?ref=22

Aaron has participated in an aggressive therapy program at the International Center for Spinal Cord Injury (ICSCI) at Kennedy Krieger in Baltimore. He works on a home therapy program ICSCI developed for him. Initially diagnosed as an “ASIA A”, the worst possible injury (ASIA E indicates normal function), he has progressed to “ASIA C”. This means that his body is trying to recover the neurological connections it needs for his muscles to work again.

ICSCI is a one of a kind, cutting edge program, only partially covered by Aaron’s insurance, so he incurs a good bit of out of pocket expenses. Much of the costly therapy and equipment Aaron needs is not covered at all. Aaron‘s wheelchair currently needs to be replaced. He recently had to replace the part of his chair that he uses to control the chair’s movement. Insurance did not pay for that; the cost was $2000. The new wheelchair Aaron needs assists him to rise to a standing position. This is beneficial as Aaron suffers from blood clots in his legs and standing and putting weight on his legs helps his circulation.

Aaron’s road to recovery is a long one and there are no guarantees. We thank you for standing with us in faith, prayer and support of this fundraiser so that we may assist with, and continue to hope for, Aaron’s recovery.


Hello!

Hello everyone! I’m sorry that there has been such a gap in between posts. Everything has been going pretty good on my behalf, minus trying to fight off something right now. The Dr. thinks it’s a virus. I’m just glad it’s not pneumonia. Thank god I have not had that since July when I had my neck surgery. Speaking of surgery, everything is still going great regarding my baclofen pump. I had my two week follow-up last week when he took off the strips holding my incision together. He was very pleased and does not want to see me, unless there are any issues, for a year! I feel very fortunate. March 24, 2014 at 4:00 PM. Now if I can only remember that for a year!

I recently celebrated what was one of my coolest birthdays to date. Obviously everyone always looks forward to 16, 18 and 21 years of age for reasons I do not have to explain. You would think anything over 30 would be a little depressing, but I do not think I will have to worry about that for the rest of my life because I now share my birthday with my stepson. It was very cool to see him getting excited for his special day, and mine, as the time got closer. I have never been a big fan of my birthday but now I have a reason to be, if only for his sake! He recently took an interest in roller skating so this is what he wanted to do for his party. We did this the week before our birthdays and it was a lot of fun. On the actual day, we had family to our house for an amazing ice cream cake which Melissa made. I will never forget the first birthday I got to celebrate with Brock!

Unfortunately, or fortunately, I do not have too much else to report. I hope everyone is doing well and I will write again soon!


NCAA Tournament

This is my favorite time of year! When the NCAA tournament begins! I love filling out multiple brackets to see how I do, although it’s normally not too great. I formed a group on Yahoo which is free and I invite all of you to join, no matter your skill/knowledge level. It’s free and should be fun. All you need is a yahoo account, which is free as well.

Please join in!

http://tournament.fantasysports.yahoo.com/t1/group/2960


Installed

I now have a Baclofen pump. It feels a little weird. Something I will have to get used to overtime I’m sure. Not to mention that it is still swollen and my body is still adapting.

I was always such against having this because the idea of something foreign in my body is a little creepy. I already had some metal in my foot and more importantly my neck that I did not ask for. Going through with the surgery guarantees that this will be in my stomach area for the next 6 to 7 years, unless something happens to the device before hand. What a commitment. My spasms have just gotten too out of control, past the point of medication, and I was running out of choices. Being constantly hesitant about going out and wondering if you can enjoy yourself without spasming and needing pulled up gets old after a few years. I was obviously ready to take whatever steps necessary to do what I thought would improve my quality of life.

So, how did it go? According to the doctor, perfectly. According to me? I realize it’s very early, but so far, not a regret in the world! My mom picked me up from the hospital and from getting dressed, out of bed, getting into my wheelchair and leaving, the ride home to entering the house, no spasms! It’s unbelievable. It’s like I’m in someone else’s body. Unfortunately they just happen to be paralyzed as well! 🙂

That’s where we are right now. I’m sure just like with anything else there will be good and bad things to come of this. I will obviously be updating everyone as the time goes by and let you know of the changes I experience. I appreciate any of you that may have read my posts and prayed for me. I have no idea who even follows this blogs anymore since I neglected it for some time. Hopefully some of you are still around and I can win you back! If only for 5 minutes a day!

Hope everyone is doing well and I will write soon!


Baclofen Pump and Some Other Things

So, it’s been a few days since my trial which went great! We were so pleased with the results and the possibilities that this could offer and allow me to do as far as therapy goes, without the spasms. The physical and occupational therapists were also impressed. It’s really a no brainer for me that opting for the surgery is the only answer. I will be having this tomorrow morning, hopefully spending very minimal time in the hospital. I cannot wait to come home, heal and start to feel like myself again.

We also had our new furnace installed. That could have not happened sooner! It really stinks being a quadriplegic and not really having a thermostat in my body that matches everyone else.

Melissa and I went to a couple’s retreat this past Saturday which was a lot of fun and beneficial for the both of us. It consisted of only couples dealing with disabilities in one form or another. There were seven in our group and I think 35 couples overall, the others being parents who have children with disabilities. Again, it was great. We get to me some really cool people and hopefully made some good contacts.

That’s really about it for now. Pretty much just taking it easy today in lieu of tomorrow morning and however many days afterwards it takes to fill normal again. I’m really confident that it’s not going to take much at all, but who am I?

Sorry it took me so long to inform everyone of the results, assuming you cared. Hope you all are going well! Melissa or I will put the post up tomorrow if possible to give an update of how things went.

Take care!


Let’s Try Again

Tomorrow morning we will be waking up around 3:30 AM or so in order to get to the hospital by 6:30 AM. I’m going to get this baclofen trial a go again. Last time they forgot to tell me to stop taking my blood thinner in advance, which I did this time. Hopefully there’s nothing we forgot this time because I think Melissa and I would go crazy. If not completely mad.

So what do I have to look forward to? A gigantic, very nice and flamboyant man picking me up out of my wheelchair to put me into the bed. I knew that he and I did not see eye to eye when he asked if I saw Magic Mike and when I said no, informed me of what was missing out on. Sorry but I think I’m doing just fine without it! Either way, he’s a really nice guy and he did a lot for us last Monday despite the circumstances. He was very helpful, which I’m grateful for. After all of that is said and done, I get to have the needle in my back! Yippee! What a wonderful Monday.

So, here’s to tomorrow going smoothly! Oh yeah, we will be getting our furnace Wednesday. Hopefully before the big storm hits, which will probably turn out to just be flurries anyway. Although I would rather a blizzard!

Take care everyone! I will touch base and let you know how it went.


Not Even a Week

Well, we have not officially lived in our home for even a week and we are needing to make a major upgrade/replacement. A few seconds before the heat would kick on, I would small gas. Not good. Yesterday I finally figured something was up and Melissa called UGI to have someone come. Apparently this was a much bigger deal than I thought because she said someone would be here within 30 minutes. Much to my surprise, they actually were.

The gentleman from UGI indicated that whatever machine he was using was detecting carbon monoxide and basically the house was unsafe. He shut off the gas to the furnace and then turned the furnace off as well. Fortunately we are still able to use the gas to cook, keep our water warm, etc. We needed to have someone else come take a look at whatever was happening with our furnace, which we did, and they indicated the issue could not be fixed and the entire unit needed to be replaced. We freaked out. Thank god we purchased a home warranty which will cover a huge amount of the cost.

We are however, living without a main way to heat our home. Thank god family has come through yet again. Cousin Nate let us borrow a few space heaters which worked wonderfully last night and today. Melissa did hear from the home warranty company and the new furnace has been approved and hopefully will be installed between this coming Monday and Wednesday. We are keeping our fingers crossed for as early as possible.

So that’s our latest excitement. That and I started experiencing excruciating pain in my neck again. Hopefully this will pass. Also, my baclofen procedure has been rescheduled for this coming Monday so we are definitely looking forward to that.

I hope everyone as well!


Trial? Failure!

So my morning got started at 4:00 AM today to get ready for my baclofen trial. We were to be at the hospital by 6:30 AM but we were running behind and got their closer to 7:00 AM. Really no big deal there.

I get checked in, taken upstairs to where everything is going to go down, get transferred into a bed from my wheelchair and got changed. Then they started trying to insert an IV. Wow. Total failure. I think they tried four times. I think they were trying for probably the fifth time when the Dr. showed up and told us he was unable to do the procedure because I was taking a blood thinner. He was well aware of this but never told me to stop taking it days before the procedure, as they should have. He apologized and took full responsibility.

There is more to this story that I will share later but right now, that’s about all I can write without getting completely frustrated all over again. The good news is I believe I will be going back next Monday to try again.

I will keep you posted!


Moved In and More

So we finally moved into our house yesterday! I’m so thankful for my family and all of the help they offered with the entire ordeal. Everything went great and as of right now, everything is really coming along, getting unpacked and it already looks like home! It’s a good feeling but we definitely miss my Mom and and the old house. We are so pleased despite the mixed feelings. It’s not like she’s going away; at least we hope not! 🙂

Without any real time to take a breath, tomorrow Melissa is going to accompany me while I do a baclofen trial for my ever bothersome spasms. We have to be at the hospital around 6:30 AM, meaning we will probably get started around 4:00 AM, if not earlier. Fortunately this is not an overnight stay, at least it’s not supposed to be. I will be admitted, giving local anesthetic, followed by an epidural to administer the drug to see how my body reacts and if I am a candidate. I forgot to mention, prior to any of the actual testing, a physical therapist will evaluate me and my spasticity prior to receiving the baclofen. Then, he or she will check in with me every so often throughout the day to see how things are going. They said this generally takes 10 hours, give or take I would imagine. We shall see!

Both of these things are very exciting times in my life! The trial could potentially be life changing, just because how bad my spasms have gotten and how they have altered my life, and obviously purchasing and moving into your first home with your family goes without saying!

I hope you all are well and I will check back with you soon!


Blogs!

Please check out my wife’s new blog! She has done a great job so far and I love reading it, especially called the great stuff about me! 🙂 Here is the address- www.sciaaronmelissa.blogspot.com . We have also had the privilege of getting to know another couple dealing with life and an SCI. Here is Dana and Mike’s web site – http://www.lovelikethislife.com/ . You don’t have to be living or dealing with an SCI to just appreciate the stories, information and sometimes life lessons you can that are offered. They are definitely worth a read! Feel free to pass along information!


Downton Abbey

If anyone out there is looking for a new TV show to start watching, I highly recommend this. I would never in 100 years would have guessed I would enjoy this as much as I am. This is coming from a from a man who loves Sons of Anarchy and The Walking Dead. I just heard so many great things about it and I’m really happy we finally caved in and started watching. I would be curious to hear what other people think.

That’s all for now! Just a random thought.


Counting Down

Our house is finally coming together, although we have not yet moved. Our days living with my mother are limited, and that makes me sad in certain ways, but also is very exciting because of the new chapter in our lives that we are starting. After all, I am almost 31 years old, married, with a stepson and living at home with my mother. Who would have guessed? I never imagined this is where I would be in my life at this stage but then again, it’s almost getting to the point where this seems somewhat normal, if that’s at all possible. August will mark four years since my injury and everything I knew before hand has either changed significantly or is no longer part of my routine. Some days are easier than others. Some days bring more joy than others. Some days I really struggle to be anything than miserable and I hate it. It’s not fair to anyone. Not myself but more importantly, not to those that love me and sacrifice so many things on a daily basis just for my benefit. That’s why I’m hoping this new chapter of ours will allow me to get a new start, if for nothing, only for my own mental health! Besides, my wife and stepson deserve my absolute best. Not that the time that has passed with them was horrible on my end, at least I hope not, but I could have definitely done better. I guess everyone can always do better, but I’m really looking forward to this fresh start. So anyway, sorry for this long and rambling post, but I wanted to say hello and give you a small idea of what’s going on. I really appreciate any of you out there who still follow these little blurbs about what’s going on in my life. It means so much. I know I keep saying that I’m going to write more often, but this time I mean it! I promise! I hope that all of you out there are well. Talk soon!


We finally settled!

As of Friday, January 11, Melissa, Brock and I are proud homeowners! We are very excited with all of the potential that this home has to offer. It is in fine condition and ready for us to move in however, we are looking into some home modifications so we are unsure the exact date we would actually make the move. Thankfully my mom is in no rush to get rid of us, at least it doesn’t seem so anyway! 🙂 I would love to post some pictures of the house but I need to figure out how to do that. As easily as I move around with computers and now a decent amount, I just cannot figure that part out! I will work on it. Either way, we will be taking before and after pictures so at some point hopefully we will be sharing those with everyone.

I know it’s been a while since I’ve touched base so I hope that everyone had a very nice holiday season. I also hope most of you are avoiding the flu although that seems practically impossible.

Thanks for following! We will touch base soon.

Aaron


New Family Member!

Our family grew early December 3 with my cousins welcoming their beautiful baby girl, Elle! She is absolutely beautiful in the only bad part about the whole thing is that they live in Las Vegas. Danielle, my cousin’s wife but as far as I’m concerned my cousin as well, started going into labor just before her mother was able to arrive from Pennsylvania, which they had planned. She was able to reschedule her flight and arrived just in time, along with one of Danielle’s sisters, which was a surprise to her. Bill, my cousin, will be having his mother visit very soon! I know that she is very excited and she just celebrated her birthday on the 6th, so what a great birthday present that was!

Danielle and the baby (And Bill!) are thankfully home safely, healthy and happy but if you could pray for them, I’m sure they would be very appreciative! It definitely will not hurt!

Thanks a lot and congratulations to them again! I cannot wait to meet her!


Not Alone

A new friend I’ve made recently through a spinal cord injury website and now on facebook has a blog that she and her husband created called www.lovelikethislife.com . I have really spent a good amount of time reading through her blogs and with that her inner most thoughts. It has been a wonderful outlet for me. I don’t feel quite so alone. Not that I am alone, at all, because I’m not. BUT, sometimes the things that go through my head make me feel like at times I could be. Finding this blog by Dana & Michael Ritter has shown me that I’m not alone. I’m not the only person who feels this way and it’s okay to get overwhelmed.

For example, I get up earlier on weekends then on days I’m working, because I get Aaron ready. Yeah, we could sleep in until 9am, but then we wouldn’t start our day until 1 or 2pm. And we are old, and typically like to be in bed, snuggling, watching a movie by 9 at night. So, depending on the day and what we have going on, I get up at 5 or 6 to get things moving. That’s not fun. But that’s just life. We make the best out of it. Thank god for DVR. We catch up on some of our shows, as we are getting ready for the day. I always make him put his hand on my butt or something inappropriate when his mom walks in, and we act like nothing is wrong. We laugh about that all day. It’s the little things, I swear. But do I secretly want to oversleep some days and not get up until 10am? Yeah. But then I’d feel guilty, and we wouldn’t be moving till late afternoon. Just not worth it.

Yesterday at work I was meeting the ladies in the beauty shop. I work in a continuing care retirement community. After introductions, they were showing me all of the different equipment and cool things about the salon. They showed me a wheelchair lift that is great for ladies and gentlemen in chairs that need lifted up for cuts and stuff. They don’t even have to get out of their wheelchairs. Not thinking (because I usually don’t) I said “Oh that’d be great for my husband!” The ladies said “WHAT?” Sometimes I don’t think about things I say. Aaron being in a wheelchair is the most normal thing for me. That’s how I met him. That’s the only way I know him. But sometimes I forget my audience and something that is so normal for me, may be completely foreign to someone else. This what that case. So they asked what happened. I told them an accident in the ocean 3 years ago. They asked if I knew him then. I said no. Then the first thing they say is, and it never fails “you’re amazing. You are such an amazing person.” I just smile and say, something along the lines, well, if you love someone being a wheelchair doesn’t really matter. People usually go on and talk about how “inspirational” our story is and stuff like that. Gag me.

Wanna know the truth? Sometimes it sucks. Balls. Sometimes I just wanna be able to have a bad day, come home, mope around the house with a glass (or five) of wine and watch Private Practice. But that’s not life. I’m a mom to an awesome and energetic 7 year old. He wants to play football and monopoly. And somewhere in there I cook dinner. Remember to give Aaron his pills. Scratch his head. Adjust his microphone. Listen to Brock talk about the weather forecast 8 times in a row and still seem excited. Then get Aaron in bed.

And then there are the normal every day days, that are the best. Like coming home and playing Life on Wii, or heading out to our favorite little Tropical Smoothie Café followed by the boy’s getting hair cuts and then shopping at Target. We love relaxing, chill evenings when we’re all spending time together, joking, and laughing about something Brock would say is inappropriate. I love seeing Brock climb up on Aaron’s lap to play Wii with him, or climb up there at a store and they hide from me. The new favorite is they steal my cart and start pushing it down the aisle but simply rolling as fast as possible into it. That’s a good one. THESE moments are the ones that make me love my life and know I wouldn’t trade it for anything. Truly.

But that’s not to say life still doesn’t have it’s challenges. The lady at work who was trying to give me a compliment about being with a man in a wheelchair just ended up offending me. I don’t hold it against her. I’m used to it by now. Anyone who loves a person and would not be with them because they are in a wheelchair, well I don’t think that’s really love. Or not the kind of love it should be. It doesn’t matter how I met him, when I met him. I fell in love with him. Chair and all. I’m not amazing because I fell in love with a man with a disability. I’m not an example for anyone. Instead, anyone that feels the love Aaron and I do should be amazing, simply because of the kind of love we have for each other.

Don’t get me wrong, we are not perfect. We argue, butt heads, bicker, blow things out of proportion like the best of them! I surely am not perfect. I get grumpy and irritable. God forbid Aaron wakes me up to turn off the TV after I’ve fallen asleep. I’m such a mess of grumpiness I don’t even remember the next day, but he always reminds me! I get jealous. Jealous that I may not ever walk hand in hand with my husband. Jealous that other people have and I missed out on it. I get angry that something so horrible happened to such an incredible person. But through all the crap and imperfection we love. We love each other something fierce.

I am forever grateful for this man. And I’m also grateful for other people out there in situations much like Aaron and I that are willing to share the ins and outs of their lives as well. That makes me feel a little less crazy! Please check out their blog at www.lovelikethislife.com ! It will not disappoint!


Happy Thanksgiving!

Hello everyone! I hope that everyone has a wonderful day with their families eating lots of food, laughing and making memories. Hopefully everyone remembers the name of the day and thinks about everything in their life to be thankful for. I know I will. Three years ago I was still in a rehabilitation hospital, on a ventilator, had a trach, countless other issues and on top of that, in pain and so heavily medicated that I completely missed the holiday. People came to visit me which I did not remember the next day. Thank God for the progress that he has allowed me to make since then. I’m thankful for so many things that I cannot begin to even express my gratitude. I would be no one and who knows where I would be without my family, their love and support, constant giving and complete selflessness. They, along with God, have allowed me to become a person I am today. Although it’s not the same person as four years ago, that no longer matters. From this point we go forward, grow as the new person I am and be thankful for the opportunities I have been given.

Have a wonderful Thanksgiving! Did not take your days for granted.