Man, what a weekend!

It was the 25th anniversary of the National MS Society Mid-Florida Chapters Bike MS. And my 5th year of participation! The last 3 years I’ve volunteered, the first two years were as a SAG (Support and Gear) driver and this year I coordinated the SAG Drivers along with Dad. Going into the weekend everyone was performing an anti-rain dance, sun dances, doing anything they could in hopes that the rain would hold off until AFTER the ride. The weather forecast was calling for rain at the least and we were hoping that was all we would get. Thankfully on Saturday we didn’t get any rain. It was overcast and then breezy, which helped a lot at keeping the heat down. We also didn’t have any medical emergencies this year; part of that was due to the cooler temperatures. The century route was closed as a precaution, although we did have a rider get confused and end up on the century route, even though he meant to take the 50 mile route. Oops

Because the century route was closed, Saturday was the earliest the ride as finished in years. Dad and I were in Orlando by 3pm! It was a little too breezy to go swimming, plus I was the only one who brought a suit in hopes of possibly making it into the beautiful pool at the Caribe Royale. Sunday was forecast for more rain, a 60% chance by noon. But the morning was decent, we didn’t have to delay the start of the ride this year thankfully. My SAG drivers got out on the course and I headed back to Lake Wales to direct them all. The first riders made it back to Bok Tower at 9:15, a mere 2 hours after the start of the ride!!! We did get some brief rain showers late morning, but they were thankfully very brief. I would say that the ride this year was a definite success. Sadly we had less volunteers this year than in years past, but we were able to make the ride go as smoothly as possible for all participants. I’m already looking forward to next year.

Hotpads for Hope – Currently Available

The following are currently available for $5 each plus shipping. Remember, proceeds are going to the National MS Society Mid-Florida Chapter. If you see one you would like or would like one in a different color, email me at ridetoerasems@gmail.com.

            

Step by step

On March 24th I’m participating in the National MS Society Mid-Florida Chapters Walk MS that is being held at Lowry Park Zoo.  The funds raised via the Walk (and Bike event) are used to help those living with Multiple Sclerosis here in the Mid-Florida area.  Funds raised help people afford durable medical equipment to make living their lives easier, it helps people afford disease modifying medications that they may not otherwise be able to afford.  Funds go to research to help find better medications, why MS happens and hopefully, one day soon, a cure. 

MS is something that has been a part of my life since the late ’80s when my dad was diagnosed.  In 2006 I received my own diagnosis.  The symptoms vary greatly and it affects each person differently.  I walk so I can help people who are affected worse than I am, I walk so that one day someone does not have to hear “You have MS”; and I walk so that my own version of this stays just as it is and does not get any worse.  Please help me. You can help by donating here.  Every dollar helps, so even if all you can do is $1, that’s ok. It helps.  Thank you.

Oblahdee, oblahda, life goes on

La la la life goes on.  This is actually a better title than my original one of 10 little itty bitty minutes. Why? Mostly because it’s just an update about life and how it goes on.  I know I’ve been MIA, and I haven’t meant to be. We had the bike MS Citrus Tour in May, Grandpa got sick, Mom got sick, Mom got sick again and house hunting has continued.

This year for the Citrus Tour J and I were SAG drivers and next year I’ll be riding again. My friend Super K’s daughter decided she would rather ride than volunteer. As she’s only going to be 16 she needs to have someone 21 or older with her at all times. So I’m all registered for next year and even have my team set up, Cruisin’ For a Cure. I have a brand new to me road bike that will hopefully make the hills easier for me to manage. I found it on Craig’s List for $175, considering that these are usually at least $600+, I’m happy with the price. I’ve even started riding, although given the weather lately I haven’t been riding as much as I want to be/should be. Interested in a challenge? Come join my team!

Grandpa ended up having to have a pacemaker put in earlier this summer. He wasn’t out of the hospital and in rehab a week when Mom’s Crohn’s flared up landing her in the hospital. She wasn’t out a week and landed back in. Poor Mom has been through the ringer this summer. But they did manage a trip out west to visit my brother and some friends in California. Mom said it was nice being able to drink water directly from the tap. Our water here in FL has a seriously funky taste to it, so everything we drink has to be filtered.

The house hunting continues. In March J put in an offer on one that we really liked. It’s a short sale and was perfect, it only needed cosmetic work and a few minor repairs/updates. Sadly Chase was being stupid and decided they didn’t want to order a new BPO (the stuff they do to determine the price/value of the short sale home) to meet J’s asking price. So back to the drawing board we go. In the meantime, I’m still living at my 2 steps above ghetto apartment. And I currently have only 1 neighbor out of 3! The pain in the butt one moved several months ago and the one I liked just moved the past weekend Thankfully she’s not going far.

On the exercise front I’ve been trying to get more of that in. There’s been the bike rides, which I really need to improve on.  I also did something I’ve never done before today. I ran on the treadmill in the gym for 10 minutes straight! It was at a slower speed, 4.5 and 4.4, but there was no walking until the cooldown period. I was pretty proud of myself for that. My goal for that is to keep running that 10 minutes but increase my speed. I think I can manage that.

Ahh Spring!

We’re finally starting to warm up, although we are still below average.  I don’t care, it’s beautiful outside! So nice that I actually was able to take the motorcycle into work today.  And it felt great!  On this beautiful day I got to skip out of work early, I had my semi-annual neurologist appointment. The good news is everything is status quo.  The even better news? He said that there’s going to be 2 oral meds coming on the market this year!!! 2 people!

Now granted I won’t actually be able to switch for probably at least a year. That’s because one of my lesions is directly on my spinal cord at the C2 level. When my symptoms first presented my body was numb from the mid-chest down, that’s a lot of numb body. So my doc doesn’t want to take any chances of making that lesion any worse. And I’m with him, I like having use of my legs and hands. And waiting to switch to the new meds means there’ll be that much more time for it’s safety and effectiveness to be evaluated.

I did have to go have blood drawn.  Since this wasn’t planned I wasn’t able to make an appointment in advance. So I spent time in the waiting room texting my friend to see how she’s doing and how her husband is doing. That place needs magazines, they had none!  Not a one, nothing to entertain people waiting.  Well, except for the other guy waiting with his significant other. He was pretty entertaining. He feel asleep and started snoring softly.

I’m giving the Topsy Turvy another shot.  I want to be able to grow tomatoes. It may be that the direction my apartment faces is a detriment, but I really hope not. I did get some cherry tomatoes last year. This year I’m going for beefsteak ones. I also picked up a packet of chive seeds so I’ll be growing that. I’m also thinking of another Topsy Turvy with Cucumbers.  I tried doing that in the container last year and that didn’t work out so well.  Partially because I didn’t know it needed to be staked.  According to the Topsy Turvy though, cukes and green peppers are supposed to do well.  And strawberries. Although I’m thinking this weekend we just need to head to some local strawberry farms since they’re doing U-pick ‘em now.  Yum!  I’m going to head outside, get some vitamin D, plant my chives and re-pot the petunia I picked up. I’m feeling very domestic, now if only there was more yard for me to be domestic in. (Still working on that)

Amazing!

I have had such a positive response to my Hotpads for Hope.  I was a little afraid I’d make all these and no one would want any and there would go my great fundraising idea.  But I’ve been very pleasantly surprised (even with all the positive encouragement from my co-workers).  I’ve already sold a total of 11 items and I have order requests pending for another 10-13!  Most of those are custom too.  I’ m very excited about being able to present the money raised to the National MS Society. 

There’s a doctor at USF’s MS Center who is applying for a grant to study CCSVI (read more about it here) and MS.  This doctor believes that problems with blood flow between the brain, spinal cord and the heart contributes to nervous system damage.  This is a study that won’t be underwritten by drug companies because any treatment that results likely won’t include medication.  But this is an important study, the results of this study can bring about new procedures, therapies, treatments and whatever to help people suffering from MS, and maybe even other diseases.  As far as I’m aware, this is a completely new direction for anything.  So the funds raised from my Hotpads for Hope as well as funds raised by others during the walks and ride will not only help make life easier for MS sufferer’s in the area, but may also be used to help fund the grant for this study.  Or fund the grant for other studies to find better (ORAL please!!) meds, the cause of MS or even a cure. 

This isn’t quite where I planned for this to go, but there you have it! I need to get back to crocheting my little fingers off, I have orders to fill!  And I’m losing time this weekend, we’re Daytona bound for Bike Week! Don’t worry, I’ll have pictures for everyone when I come back.  Enjoy your weekend, pray to whatever higher power you believe in that it’ll warm up and I won’t freeze this weekend and I’ll see you on the flip side.  Oh, and if you haven’t already, get your order in for your own hotpads!

Time flies like an arrow…

And fruit flies like a banana Sorry, when thinking of a title for this post my co-workers wall hanging came to mind.  I know, it’s corny.  But I could have gone the typical route and said “Time flies when you’re having fun” or anything other cheesy phrase that alludes to the passage of time.  But, as cheesy and trite as those phrases are, they are really fitting.

It amazes me how fast the time really has gone. Here we are in the beginning of February already.  I’ve been planning on having more posts, and I’ve even composed them in my head.  But I’m never at my computer while composing, or with a pen and paper to write down my thoughts.  And then I forget.  Or, like is happening right now, off track.  Time flying and how it amazes me.  Well, it amazes me because in a few short months it’ll be time again for bike MS.  This will be my third year of participation in this important fundraiser, although my role will be shifting a bit this year.

This year I’m not riding, I just can’t.  If the route was flatter then it probably wouldn’t be an issue, but there’s just too many hills and my poor legs just can’t handle those hills.  So instead I’m helping out in a much needed capacity, I’m going to be a SAG driver! SAG is support and gear, they’re the vehicles that drive up and down the route picking up riders and ferrying them to the next rest stop, providing something to eat or drink, or maybe even just a moment in the AC.  Unlike riding I’ll be stuck out on the route until the last biker has made it to the destination.  But I’m thinking that I might bring some crocheting with to keep my hands busy while we’re cruising along.

The Mid-Florida chapter of the MS Society has changed things up a bit this year. This year volunteer’s get to register on the website and can have their own fundraising page.  I actually have two, one for the bike MS and one for the brand new walk taking place in Lakeland in April!  My participation in the Lakeland walk is a story for another day.  But I am very glad that volunteer’s have the ability to fundraise online.  I was planning on still doing fundraising and this just makes it easier.  The money raised from this event is so very important, it helps people in the area with so much.  And funds even go into research, research that is being conducted to find medications that help to fight MS as a whole or even just parts (like the new oral medication recently approved by the FDA), and research that can help to find a cure.  And every dollar raised helps so much!  If you’d like to donate, please do so by clicking here, it’s tax deductible.  And if you don’t want to donate online there’s an address provided for sending funds directly to the MS Society.  Or click on the about tab, submit your address (I promise, this is seen only by me) and I’ll send you a postage paid envelope. 

Thank you so much for reading, and for helping, no matter what cause is near and dear to you. There’s so many that needs help and your generosity is appreciated.  Much love!

Who let the dogs out?

Meeting number 2 for my MS Support / Social Group happened today and it was amazing! I contacted a local dog trainer, Clark Inghram of Inghram’s Sit ‘N Stay Dog Academy about doing a presentation on service dogs.  Clark Inghram is the owner/founder and provided a wonderful presentation.

He brought with him two volunteer trainers and 5 dogs, including a 9 month old Australian Shephard.  He showed us the basic commands that he teaches all the dogs and explained some of the different things service dogs have been trained on to assist their owners.  One dog acts as a brace for the owner who has MS.  If the owner needs assistance in getting up the dog is able to provide that and wears a special harness to be able to do so.  Another dog assists a person with Cerebal Palsy who walks leaning forward and quickly.  This places his weight off center and the person was prone to falling.  He was matched with a dog that walks slower so the dog walks slightly behind and is able to slow the person down a bit.  This dog is also trained as a brace so if his master does fall down the dog can assist him in getting back up.

Inghram’s first does basic training, making sure the dogs are able to sit, stay, back up, leave it, etc.  Once that foundation has been laid, they then move on to any additional specialty training based on the needs of the owner.  Currently they have 5 puppies (one of which was the Australian Shepard) that are being fostered and going through their basic training.  Once the pups reach a year Inghram’s is going to locate service personnel in the area in need of a service dog and determine what that particular person needs. Once that has been determined than additional training for both the dog and its new owner will take place.  The same procedure is carried out for all of their service dogs, the additional training occurs once they have identified what services the dog is needed to provide.

Everyone really enjoyed the presentation and I was really happy to see people learning about an alternative assistive device, something other than wheelchairs or canes, etc.

Life is like a box of chocolates…

Sometimes sweet, sometimes bitter, sometimes a little nutty.  Right now, overall, life is pretty sweet.  I’m very excited about tomorrow, and that’s contributing to the sweet part. 

I’m going to be doing some volunteering for the National MS Society and starting tomorrow I’m going to be leading a support group for those with MS!  Doing this fulfills a need and desire I’ve had to do more with the National MS Society and the volunteer co-ordinator has been amazingly helpful with this.    The group is going to be more of a social support group and tomorrow is our very first meeting; an afternoon of games, just something lighthearted for people to get together, chat and maybe forget about everything for a while. 

I’m also working on coming up with ideas for future events.  One that will happen is a yoga class.  I’ve talked to my yoga instructor from the gym at work and while details need to be hammered out, she wants to come teach it!  The class will focus more on adaptations that can be done for yoga poses for those who maybe are chair bound or can’t get onto the floor.  I’m also tentatively planning on a potluck or a cookie exchange for December, again something where people can get together, chat and let the stress of life and the holidays just slide away for a little bit.  I’m also planning on contacting the SouthEast Guide Dogs or DogSense Obdience to check on finding someone who trains service dogs for people with disabilities.  I’d love to have someone come in and speak about how a service dog can be a help beyond the usually obvious guide dogs. 

The social support group is starting to become a reality and I’ve had a lot of people respond positively.  I’m looking forward to connecting to more people fighting MS and hopefully making some new friends.

More MS Pictures

Dad finally sent me the pictures he and Mom took this weekend.

This is the official photo of our team, minus 3 people.  The guy on the left is Meghan’s husband and he accidentially rode 85 miles on Saturday instead of 75.

 

 

 J starting out on Sunday.  I was ahead of him and concentrating on not hitting or getting hit by anyone else in the pack.