Once SIlent-Now Proud to Speak for All Amputees!

Hello everyone! I’m Terri Ross, a Lead Advocate for the Amputee Coalition, founder and President of Paducah Area Amputees in Action, Inc Support Group and also the proud mother of Kristin and Kelsey, wife of David and the very proud Gran of Colton. I am also a daughter, little sister of the family, Aunt TT to several nieces, nephews, and great nieces and nephews. My husband and I are both second generation farm families and proud to continue the family tradition of row cropping, although we aren’t as involved as we once were when his family farmed their own farms and others, too. 

My husband, David and I now enjoy taking a long weekend when we are able; attending car shows, drag races and visiting with our long distance friends. Our girls are older now, the oldest graduating from college this spring, the youngest graduating from high school in May. We enjoy traveling to warm locations in the winter with friends and basking in the sunshine for a few days to escape the dreary winter weather. These are memories we are making together that will. hopefully, last a lifetime. 

There was a day in September, 2003 when I almost lost the chance at making memories with my family. Just another busy workday for me, not enough time in the day to get it all done, working through lunch, grabbing a bite to eat as I worked at my desk, too tired to cook, so we planned to eat out as we did often. Life was good, we were on top of things, had nice cars, great jobs, I loved my job, bought my kids whatever they needed and most of what they wanted. All that came to a screeching halt on that beautiful September Friday afternoon. 

When I woke up the next Wednesday afternoon for a few minutes, I wondered where I was, I could tell I must be in a hospital, but I knew it wasn’t the familiar surroundings of the local hospitals I had visited and even been a patient in a a few times in my life. I heard a few familiar voices, people speaking to me, but back to sleep I went, then later, doctors surrounding me and telling me I was going to have another surgery, this one to wire my jaw shut in the morning. This, I understood and wanted no part of, but someone must have hit the “sleep” button again because they upset me. The next thing I remember is my husband, David, standing beside me and leaning down beside me and softly telling me, “I have to tell you, something, Babe.” 

It’s been over nine years since those words were spoken to me and I have literally come a long way, Baby! Back from the edge of death, so that the thought of it doesn’t frighten me like it once does, I don’t fear the pain or uncertainty of wondering what happens in those final moments. I am definitely a believer in Heaven and Hell, but today I am not here to argue those points with you, just to tell you since I have been to the brink, my fears were quieted. From being silenced by a respirator, a tracheotomy and jaws wired shut to conquering one of my biggest fears, the dreaded public speaking.

Although by accident, my accident has led me down a new path in life. At first, I refused to take part in any of it. I was determined to return to my job and work as I did before, although it took me 13 month of intensive rehab and numerous surgeries and setbacks, I returned to my previous position with the company on a part time basis. I worked part time until the they would no longer allow me to stay in a part time position and I had to leave my job. This was like a kick in the gut, I had worked so hard, tried so hard to to return to what I loved doing and be the best employee I could be and for this to happen sent me spiraling into feeling as if I had been working for nothing. My job defined me, I was good at it, I was great at it, really. I did whatever needed to be done and left no task unfinished. There were days before my accident I was so sick with fever, the safety manager, followed me around, demanding me to leave, because I was sick and probably spreading germs. I refused and told him I could not leave, I had work to do and vacation/sick days were for days when I was not sick, when I could enjoy the day off, but I hardly took a day off, I rolled over vacation days into the next year or took the cash instead because I was too busy.

The “after accident” me would drag myself into work for five hours a day, four days a week. Some days I could only get myself there in a wheelchair. I would have someone back my truck out of the garage so I could get in it from my wheelchair. Going out the back door of our now modified house, I would hold my walker in my lap, along with my purse, wheel to the front of the house and load my wheelchair in the back of the truck. I would then hop to the front of the truck on my walker. Then, after loading the walker, I would get in and drive to work, already tired after just getting loaded up to go to work. A few times, I forgot to put the brakes on the wheelchair and just as I stood up, the chair would roll backwards down the driveway, almost to the road, usually ending up at the foot of the driveway. I would stand helplessly, watching it roll, praying it didn’t roll out in front of a car and hurt someone and silently cursing myself for being so stupid. By the time I could get it retrieved by driving down and loading it up, I would usually be in tears and I would just try to get myself together before I got to work and wipe the tears away before I arrived.” Everyone has bad days”, I would tell myself. “When I get to work, I’ll forget about this and I’ll be ok”

I began talking to other amputees in my doctor’s office, at physical therapy and at my prosthetist’s office and asking them questions about their prosthetic limbs. Did they like their limb they were wearing? How did they lose their limb? Why did their limb look different from others I had seen? My curiosity about these things had me asking so many questions to my doctor, he approached me about starting a support group for amputees in our area. He told me he always knew there was a need, but felt they needed a person with leadership qualities and I might be the right person. He asked me to think about it and I agreed. Later, he asked me to visit a patient of his, who was having difficulty adjusting to limb loss. 

This would be my first peer visit and it was both difficult and healing for both of us. I approached the patient, an older lady, who was in physical therapy at the hospital after her amputation, learning to use her prosthesis. When I spoke to her and suggested I was going to start having meeting with other amputees, offered her my support, told her my story, she began to cry. I was very upset also and went to the nurse’s station, found a nurse who had cared for me several times in the stays on the unit and also cried in her arms. 

Later, I attended a clinic, where several amputees and family members were gathered and saw this lady with her daughter. The daughter was asking if anyone knew of a support group which her mother had been told about by someone who had visited her while in the hospital.  I reluctantly spoke up and told her it was me, but was relieved to learn she was excited to come to a meeting. The lady and her daughters attended meetings until she passed away from another condition a few years later. She was able to wear her prosthesis, walk with a walker, then a cane and return to her home, which was her goal. We were so proud of her success. Mission accomplished.

I knew I wasn’t finished with my mission, I had only begun. From a conversation with a lady who needed some encouragement and who also helped me find myself. My new path in life. Starting a support group is difficult and there are times I want to quit.Those days when I am tired and want to go home and relax. But, then I worry if there is someone new coming that night and if I am not there, will that make the different in whether they succeed or fail? If my friend, Jeanne and her husband had not shown up the first night at my first attempt at having a meeting and been so loyal all these years, would my group have been successful? Jeanne has been an
amputee since age 8 and will tell you being an amputee at 8, was very tough, kids are mean and life was rough for her at times. She married a wonderful, loving man, who attends these meeting with her because they still enjoy each other’s company after over 30 years of marriage. She worked long hours and walked three flights of stairs every day for over 20 years and has been my inspiration since the day I met her. There’s nothing Jeanne can’t do and I was determined to do the things Jeanne told me she could do and inspired me to try new things. She has been through so many things in life and never thinks twice about just doing whatever everyone else does. I would not be where I am today without Jeanne and her support for our group.

These last few weeks have been hectic and I have gone places I have never been before. Representing all of us by testifying before the KY House Insurance and Banking Committee on behalf of the prosthetic parity bill is something I had been working toward for almost two years. The Amputee Coalition has been preparing people like me for the chance to be ready to represent each state that does not yet have prosthetic parity. I am grateful to them for having faith in me to represent all of us. Speaking for us, representing those without a chance to speak, who do not have the opportunity given to a select few by luck of the draw, or media spotlight, by being an outstanding athlete. Those who get up every day and try again, blisters, socks, pads, pain and squeaks, I represent each one of you and I am one of you, the blisters, socks, and pain, included. Thank you for letting me represent you. 

 

If you have questions about the Amputee Coalition or Paducah Area Amputees in Action, Inc. Please go to www.amputee-coalition.org or call 1-888-AMP-KNOW  

You can contact Paducah Area Amputees in Action, Inc. at 270 488-3020 or find us on facebook 

 

 

 

 

 

 

Two Feet Shorter welcomes Nicole Milholland!

So glad to welcome Nicole Milholland to our blog! There are only so many guy things we can add to a blog, so I hope Nicole might be able to add some girlie friendly content! She just might also add some insight into her journey as a congenital amputee, sports medicine rehab professional, and educator!

So honored to have her here, helping and supporting amputees and their families!

Social media, new links, and cool new stuff!

All right then, college is done until January, and I am hoping I can get caught up on a few things I want to get done! I am hammering out a few things right now, and playing around with social media a bit more.. New facebook page, new twitter, and all that jazz!

Before I get into that, I would like to introduce you to an acquaintance of mine. I am sure most of you have heard of her, she is Stephanie Decker. Stephanie and I often meet in passing at our shared prosthetics company, Kentucky Prosthetics, and at amputee events.

She has a new website, and I offered to share her new site with my readers, and she gladly accepted. So, there is a link on my links section to the side, and the website is:

www.stephaniedecker.com

 

I wish you the best of luck with the site, Stephanie!

Now, on to other things! I have a facebook personal page and a facebook public page. Sometimes the things I put on my personal page are for a broader audience, and sometimes not. so, if you would like to shoot my public page a like, please do so.

Links to my public page and my new twitter accounts are in the sidebar here, so feel free to like, follow, share or what have ya!

Me and social media, happy accident waiting to happen? Who knows, follow along and see!

Do, or do not, there is no try

Tonight I had a wake up call of sorts. I am back on the Jiujitsu mat again, and I am really enjoying it. for me and my trainer there are a lot of challenges because of my being..erm… two feet shorter than everyone else. Some things work great for me, and some things don’t. I have a few advantages, but a lot of disadvantages, so it is kind of give and take.

 

Tonight, was a bit rough on me. I wont go into a bunch of technique talk, because that is not the point I want to make tonight, really. Suffice it to say that I couldn’t do things the way i wanted to, my workout partner and my trainer both had to help me figure out alternatives, and there weren’t a lot to choose from. :/

 

I got mad, really mad at myself for not being able to just do it like everyone else, and I crawled off the mat a bit frustrated. A lot frustrated, actually.

 

As I got my legs on and my gi and gear packed up and was about to walk out when my trainer, Eric, asked (as always) “did you learn anything tonight?” and then followed that up immediately with “frustrated, huh? Hey, there’s ups and downs, tonight was just a down.”

 

Like a great big smack in the backside of my forehead a thought came to mind and I had to tell him that yea, I was frustrated, but…. two years ago I was lying in a hospital bed wondering how I would ever get into even a wheelchair, and now I am wondering how to accomplish some of these moves on the mat.

 

Needless to say, I felt much better after walking out the door. I actually thought about it all the way home. Two years ago my sick and broken body was lying in the hospital, and I didn’t even know when I would ever go home again. A year and a half ago I was given a pair of what felt like stilts and I wondered how I would ever walk on the damned things. A year ago I wondered how I would ever make it a day walking on campus for college without giving out. Six months ago I wondered how the hell I was ever going to keep myself up on a motorcycle…

 

And now? Now I’m wondering how to work past having no legs and only one hand to grip with on the Jiujitsu mat.

 

See the theme here? Problems are all in perspective…. when I woke up from my coma I had to push a button just so someone would come put a bed pan under me so I could go to the bathroom! Do you know how frustrating that was? I now have that same level of frustration at a problem so utterly small in comparison.

 

Perspective.

 

I got through those other things, and all the other little problems I had because I didn’t give up…. I owned those problems. I bought them lock, stock, and barrel. I didn’t put them on lay-a-way to pick up at a later time, I put my name on them, and then I freaking owned them!

 

I am telling you this because tonight it just seemed so profound to me the paradigm shift in what I consider frustrations and problems, and I want you to know that whatever problems are so bad in your life right now… Well… Two years from now, they are not going to be problems. Now don’t get me wrong, here. This isn’t a “my problems are bigger than yours so quit crying” thing. Don’t you dare feel bad about being frustrated over your problems, or compare them to mine. We all deal with our own demons, and I can’t compare mine to yours, and vice-verses.

 

What I am saying is, own your problem. sign it on the dotted line, square it away, and put it away, so you can move onto the next thing that will surely frustrate you. If you don’t own it, it will never be yours to put away. This is not something you can try to do, this is something you either do, or don’t do.

 

Do, or do not… there is no try….

 

Own it… I did…. you can too….

A long time coming for Sara Jo!

Terri Ross, Sara and I all trucked up to Louisville today to go to an amputee walking clinic. Sara sat in her chair listening to the lectures, and watching other amputees walk….. Until it was time for the open session!

Dennis, the gentleman in the white shirt –and a paralympic gold medalist — along with a PT (I think1) named Pace talked her into getting on her feet!

So here you go, all those that have strived to help Sara, your efforts have paid off!

She walked down and back twice the entire length of the conference room we were in, then, in a quick trip to my prosthetics team office at Kentucky Prosthetics down their bars after an alignment adjustment by Matt Hayden.

Proud of you, Sara! Keep it up!

Sockets, struggles and a bit about Self Pity

The last couple of months have been tough for me. Around Mid-July I went to Chicago for a few days to be a guinea pig for the gang at Coyote Designs and got to try out the RCR sockets. My prosthetic gurus from Kentucky Prosthetics attended, and it was a great time, as well as an awesome socket concept. I now have a set of RCR style sockets of my own, and like them quite a lot, very comfy.
Everyone there was very professional, and I learned a lot about what CP’s and CPO’s go through to learn and do what they do. I also had an eye opener about how some amputees feel about technology advancement. Another DBK amputee was there to help with the class, and he was walking on a set of legs based on 25-30 year old technology. I was amazed that he was totally fine with that, and he himself is a prosthetist. As I played around in my RCR test socket, testing the limits of my movement, (I was seeing how far apart I could spread my legs and still be standing) he asked me why in the world would I want to do that? My only answer was “Well, why not?”

The real answer is, because I always want to push the envelope.. I always want to go a little farther and do a little more. I am never happy with where I am at, and am always striving for that next challenge, no matter how big or small. I am sure my prosthetics team must want to pull their hair out at times over me, but they take it all in stride and help regardless!

The point here is, for anyone in life, amputee or not, you should never settle for what you have and should always strive for more. Always move forward, never stand still!
While in Chicago I also got to hang out with a friend, and she drug me all over downtown Chicago! We had a great lunch with crappy service, and I wont even begin to go into trying to get a cab ride out to the airport! That was a nightmare, but it was well worth for the time spent! Thanks Nicole for showing me around downtown!
The morning after my flight back, we had did the poker run and event for my friend Sarajo Mayer, and it was a success! We had a great ride, (well, all except for my bike breaking down lol) great food, and the Cold Shot Band played some great tunes into the night. I want to thank everyone who attended and helped out Sarajo! Your donations are helping her to get into a set of legs she can use, and on the road to walking again!

All that activity in such a short time took it’s toll on me. I messed up my knee, and had to be helped out the door of Sarajo’s event when all was said and done. I ended up being off my legs for almost three months! That was a tough time for me, and honestly why I haven’t posted a blog for a while.

Me, Joe and Kevin

My only real time on my legs during that time was for a video and photo shoot for Kentucky Prosthetics and Otto Bock. I was honored to be asked to be asked to participate in some promotional work for amputees in the EMS community. Fire, EMS and Police will be represented in several videos from Otto Bock by Officer Kevin Trees, Paramedic Joe Riffe, and myself. Both of these guys are amazing individuals, and I am proud to have worked with them on this project.

It was a tough one for me, as I could barely walk for the pain of my knee injury, but I made it through. That’s me, the short guy there on the left, Joe Riffe in the middle, and Kevin Trees on the right.

Kevin has been back on active duty as a police sergeant for years now, and I am happy to say that Joe recently announced his return to active ambulance service as of yesterday, I believe. Joe is the only above knee amputee paramedic working in the Louisville area! I guess it is my turn to hurry up and get back to the fire service, I’m falling behind these two!

I am now back to walking full time, and I have some ground to make up from being off my feet so long. Right before I got hurt, I had started back on the Jiujitsu mat working out again. My friend and trainer Eric Myers, owner of Myers Dojo was happy to accept the challenge of training a guy with no legs in BJJ. I am happy to say next week I should be starting back my workouts and getting back on the mat!

So, life is getting back to normal for me, college is going as well as college can, and I am again moving forward. Throughout my entire down time I got mad, upset, a tad bit down, and really really bored. The one thing I tried not to do was feel sorry for myself. That never helps anything.

Self pity is an enemy to all, even if your not an amputee, and if you let it in it will ruin you. I know now it seems a bit cliche because of of it being put into a movie, but DH Lawrence’s poem Self Pity can be a lesson for us all:

Self Pity

I never saw a wild thing
sorry for itself.
A small bird will drop frozen dead from a bough
without ever having felt sorry for itself.
Those are some very powerful words. I think I would prefer to be a wild thing myself, how about you?

And just because Mr Mortensen does it so well, give him a listen!

And this clip here is for a buddy of mine who very recently lost his leg… I think he will be a wild thing too, and although right now he knows pain, I don’t think he will ever know self pity. This one’s for you, brother!

New feet for me.. Perspective for you!

I recently posted this to the Amputee Coalition of America’s facebook page. I want to share this with you all, and then afterwards expand upon it..

Just had to share my excitement! 6 months ago I bought a gently used right side College Park Tru-Step foot on eBay. since then I have found lots and lots of other right sides, but no left side, at least in my price range. so several months ago I was a guinea pig at an OT/PT CEU hours conference. I met a person who is themselves a single BK amputee, and knows how to get feet. I told them what I had, and what I still needed. I pretty much said “gimme a free foot” and they pretty much said “pfft yea right.. I can’t do that.”

Real nice about it, but up front about a no go. So, I continued to search for the left side.. No joy.

Sienna Newman, one of the great people on my prosthetics team, told me to hold out and wait, not buy a left side yet.. and guess what? A few weeks ago, a box was dropped off at KY Prosthetics in Louisville, KY, just chock full ‘o a left side foot, and various parts for my right side I already had!

We have been waiting for my liners to come in, so I can get liners and new feet on all in one shot.. and I go Monday for that. I have been through two sets of liners in six months.. I wear them out!

Why, you might ask, did my prosthetics company just not work a new set out through my insurance? It’s because I don’t have any. My insurance coverage ran out one year and two months ago.

Since then, my prosthetics company has made me 4 sets of sockets, (8 total) with another set coming in July. They are paying for and going to a class to make a new kind of socket for me simply because I want it. Everything I need takes double, as I am a DBK. If I need it, I still get it, regardless of my ability to pay right now. 10 total sockets, and all the supplies I need, without a single question.

I like my CP Velocity feet I have now, but the Tru-Steps are just awesome.

But not nearly as awesome as the person who helped me get the foot, and my prosthetics team from Kentucky Prosthetics and Orthotics in Louisville, KY.

I get asked often why I travel three hours for my prosthetics. This is why.
Can’t wait for Monday!

Pretty groovy, right? Free foot, and still getting support from my prosthetics company for more than a year without insurance.

But, that doesn’t really tell you much, so, let me put it into perspective.

The new foot? the trustep? Let me show it to you…

Now, here is the type of feet I have now.. Also College Park, and great feet.. The Velocity..

See the difference? Again, perspective..

Look at the velocity… I have some friends (best friends, actually) that have a street legal drag race car. It’s a Dodge Demon,, and it is totally badass. totally! (I’m looking at you, Jenny and Bob!) It can be driven on the street, but it is more at home on the straight track. It is built for speed on the flat track. Hopped up motor, beefed up undercarriage, and all the trimmings for go-fast down the track.

More perspective, the “cheetah legs” you see some amputees running in, those are like top fuel dragsters, they are made for one thing.. Going REALLY FAST… those are not regular daily wear feet.. Just like a rail dragster is not meant for daily use on the road.

Now, the trustep? Just scroll back up and look at it. Independent front suspension. Articulating ankle.. This is like a brand new Dodge Ram 4X4 with a turbo diesel. It is meant for on road and off. Hills and valleys. Those tough spots. You can go fast in it, but you can just as easily lock it in 4 low and dive off into the mud hole.

That is what the trustep is.

My walking should improve immensely over tough terrain. Because my current feet are made for high return on flat surfaces. to put it into perspective for all of you, here is my comparison of what things feel like now as opposed to when I still had my legs:
Flat surfaces=flat surfaces
flat grass= walking in river rock- slightly unstable
clumpy grass and/or a gravel driveway= big rip-rap rock
Everyday inclines=super steep slopes

that’s what it feels like. I have no ankle control. It is what it is. But, with the trustep, this should be different.. At least a bit better, and potentially a lot better.

Now, look at the two feet themselves. See the connection parts? Look how much taller the velocity is the trustep. I am set as short as I can be on the Velocity, and I am still two inches taller than I once was. I will lose those two inches with the trustep. That means lower center of gravity, better balance, easier sitting and standing, and easier climbing steps.

I will lose a little height, but I will be gaining so much more.

Now, moving on to other perspectives.

Now, I could potentially BUY A NEW CAR with what this foot costs. Could you imagine your local car salesman at a big dealership handing you the keys to a brand new car and say “Here ya go.. Take off.. No charge!”

Nope, not gonna happen. Not without a reality show and lots of media coverage. And you still paying the taxes on it 😉

Now, to take the analogy a step further. Keep in mind, I have not had insurance since around April of 2011. That’s a year and two months ago!

Imagine buying a car from a dealership that only sells custom made cars. Perspective: for the cost of my legs, I could have bought a new Porsch.

So you get your new custom car from the dealership, and the warranty runs out. the dealership not only gives you brand new tires every six months, but also a full new custom made frame and suspension every time you need it. and they build it by hand!

I am a bilateral below knee amputee. that means I need two of EVERYTHING. I have had about four sets of sockets made for me since my insurance ran out. that’s 8 sockets, people. the process is not simple. it goes like this:
1. Individual molds of my distal ends have to be taken.(office visit one)
2. Exact replicas of my distal ends have to be cast from these molds.
3. Plastic test sockets have to be made from the castings of my legs.
4. I have to be test fit from the test sockets. (office visit two)
5. Corrections have to be made to the test sockets by heating and custom molding to perfection.
6. New plaster castings of the sockets have to be made from the test sockets.
7. Carbon fiber sockets have to be made from the new castings. they have to add all the mounting hardware, make it perfect, or I can’t walk in them.
8. Install, final adjust and tuning. (office visit three)
That is what it takes to get me a new set of sockets. and they have to make TWO OF EVERYTHING.

Under those sockets I have to wear liners. they are supposed to last six months. I have been through TWO SETS of liners in about six months, but I am really active. these things are not free, but when I need them, I get them.

More perspective for you. I want a new design of socket. They are a new concept for BK amputees, and by all accounts, are totally awesome. an evolution in sockets. Google RCR sockets to see them. My prosthetics company has not been through the training to make them. But when I decided I wanted them, they decided to apply for, pay for, and take the educational courses to make them for me.

The classes are in July, and so my sockets will be made shortly after that.

that’s like your custom auto dealership sending their mechanics to a course to make NEW FRAMES and SUSPENSION for your custom out of warranty car. And not charging you. Making the new frame and suspension, and installing it, and just handing it over.

I would not be where I am today without the support of KY Prosthetics and Orthotics. they have stood behind me every step of the way. Insurance or not.

To the person who helped me find a foot…I am simply overwhelmed that you believed in me enough to do this for me.

And Matt, Sienna, Tommy, Mike, and all the rest at KY Prosthetics that have helped me, stood behind me, pushed me, and put up with my stubborn self.. I can’t properly put into words my gratitude for your efforts. It is humbling and overwhelming all at once. Thank you.

I get asked why I travel three hours for my prosthetics care… This is why. All of the determination in the world would not have gotten me out of a wheelchair and walking if not for the efforts of my Prosthetics Team.

I am very lucky, and I wont ever forget why.

And I can’t wait ’till Monday!

Charity Poker Run

Mark your calendars for July 14th! We are having a poker run for my friend Sarajo Mayer at the Providence VFW!

 

you have met Sarajo before, right here on my blog. she is a courageous young mother, who lost her legs and some of her fingers due to an ATV accident..

We are going to have a Poker Run w/meal included afterwards, raffle tickets for some very nice donated items, and a band and dance afterwards.

Follow along on the event page on FaceBook for more info!

Come on out and support sarajo!

Decisions, decisions… Help me choose!

Well, my old leg sleeves are getting pretty ratty, and I am needing a new pair! So, I thought you all my help me out..

Here are the covers I have been wearing for almost a year:

I know, kinda groovy.. Very cool.. But getting old for me.. so, here are some new styles I am looking at:

 

So we have flames, red static, krome, plain black, or a custom design like the Marines one above, except with a fire/rescue logo or something..

 

what do you think?

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