Transferring

Transferring is a huge part of my daily routine that seems to really interest people. After I put up my shaving video I was getting Facebook messages, YouTube comments and even emails sent to me asking for a “How I Transfer” video. Because I feel like everyone has their own way of transferring, I thought showing my way could possibly give people some ideas or tips. My transfers have come a long way since I first started. What now takes me 10 seconds used to take a few minutes at least.The best exercise to practice for transferring are stomach exercises, because you need to be as stable as possible when transferring, and working your core will increase your stability. I did the three most basic transfers at home, so if there’s any others you’d like to see in addition to these, let me know in the comments!

Hope you enjoy the video ūüôā

 

 

A Time for Change

When I returned home from the hospital I remember looking in the mirror and just being in utter shock. I looked so frail and broken. I hadn’t taken a real shower in almost two weeks, my skin was a weird yellow color from the iodine, the bags under my eyes matched the hallows of my cheekbones that now protruded from my face, and most importantly the mouth that once never stopped smiling was now straight and pursed. I was damaged goods. All 5’11” of me had dropped down to almost 80 pounds while being hospitalized, which is¬†nearly¬†half of what I weighed four years prior. ¬†While in the hospital they learned¬†that I suffer from gastroparesis, a stomach disease bought on by my spinal cord injury. Basically, my¬†stomach takes much longer to digest food, so naturally it will require smaller amounts of food at a time so my digestive system doesn’t get overworked. This disease will be life-long and it is something I struggle with every day. Eating used to be my favorite thing to do. Forget hobbies, eating was my only pass time. You mix Greek and Polish and what do you get? An eater. The doctors¬†were relentless when it came to advising me to gain weight. It’s extremely difficult to put on weight due to my condition, though. With gastroparesis you’re not supposed to eat a lot, if any, greasy or fatty foods, because they take a lot longer to digest and are harder on your stomach. I recall one doctor saying “go home and just eat a bunch of cheeseburgers and junk food”. I just looked at her like the fool she was. I was just diagnosed with gastroparesis and she’s recommending the absolute worst diet for someone with the disease. At Northwestern, nonetheless. Needless to say, I didn’t take her advice. Instead, I started eating a lot healthier, which made my stomach very happy. I knew this ¬†wouldn’t help put weight back on fast, but being skinny is better than having a flare-up and winding up in the ER. Slowly my body started becoming healthier and I managed to put a little more meat on my bones. My new body was just another thing I needed to learn to love.

One day my mom sat down with me and asked what my vision for the next couple of years looked like. This took me by surprise, but the first two things that came to mind were school and living in the city. Living in the city would be easier in my mind because you don’t need a car, there’s basically anything you need right outside your front door and getting around alone seemed to be much easier for a wheelchair bound person. The suburbs were not ideal for my situation. By now my stepdad had moved out and cut ties and my brother moved back home. The divorce was back on and our house was going up for sale. It was a time for change, for everyone. Things at home were going better than they had in years, raising all of our spirits. My mom¬†knew how badly I was craving independence, and she saw my hidden potential. Her confidence in me was undeniably reassuring. Yes, there were a lot of things that could go wrong, but I couldn’t let the fear of the unknown stop me from achieving my goals and living my life.¬†Moving out on my own was something that excited me more than it frightened me.

Over the course of the next few months my mom and I were on the hunt for the most handicap accessible building we could find. I needed an elevator, hardwood floors, a big enough bathroom, ect. I was shocked when I saw how little housing options they had for the disabled, especially in such a huge city! Granted, I can adapt to pretty much anything. How the hell do handicap people who live in boo-foo survive?¬†In the end, we managed to nab the perfect spot! It was so beautiful and I couldn’t believe this would be my new home. A few months later I was living in my new apartment feeling more free¬†than ever. It was about a five minute walk..*cough*.. I mean roll, down to the beach and all the parks. There were shops, restaurants, farmer’s markets, bars, museums, street parties and so much more for me to enjoy! When I was living at home I was confined to my bedroom in the basement because our house had more stairs than Swallow Cliff! During the two years I lived at my parents I was bound to my bedroom, the garage and a tiny living space we remodeled into a small kitchen area downstairs. Now, I had the entire city of Chicago at my fingertips and I couldn’t be happier. Everyone could tell the difference in my spirits. My mom would say, “boy.. nothing seems to bother you anymore, you’re always happy”. I suppose that’s what a little independence can do for a gal.

Living on my own came with a whole new set of challenges, but I was ready for them. Even though house chores that used to take me only five minutes or so now took about an hour, I was so elated to be able to do them I didn’t mind. Little things like learning how to open different doors to more complex situations like doing laundry all needed to be mastered. You literally have to re-learn everything you were ever taught, and that takes a lot of time. Something that used to take little to no effort now is a chore that takes a considerable amount of time and effort. Doing dishes sitting down while trying to reach over the counter is another big pain in my ass, but I just think back to the days when I couldn’t even wash my own hands and this gives me a nice little reality check. So, next time you don’t feel like doing simple tasks, imagine doing them sitting down with only about 5% hand function and maybe that will put a fire under your ass. I’ve accepted that my life will come with more obstacles than others, but¬†in the end, they will only make me a stronger person. The struggles I’ve encountered while living solo have made me more independent, self-reliant and strong-willed. All of the good in my life definitely outweighs the bad, and I make a great effort to thank God every day for all the blessings in my life.

About a month or so after moving into my new place I met this girl on the rooftop. When people ask why I’m in a wheelchair my response will vary depending on the manner in which they asked me. This girl after a few minutes of talking with me asked if I had stolen the scooter I was riding (I ride a scooter on the streets because it’s much easier). I don’t think I’ve ever laughed harder in my life. Stole a wheelchair? Is this what everyone who saw me in the electric scooter thought? I didn’t know if she was serious… ¬†I would have to be a real scumbag to steal somebody’s scooter! I laughed for a good minute, then proceeded to tell her that I did infact need it. She felt terrible, but after I told her that was the best way anyones ever asked me that, her embarrassment subsided. How could I take offense to something so hilarious?¬†As months passed we eventually became great friends. I finally made my first good friend after becoming a glider! And she finally made her first wheelchair friend! Making this new friend made me come to the realization that people would still accept me into their lives even though I’m disabled.

Pretty soon I had a group of friends (some new, some old) that all got along and treated me as an equal. This is what I wanted; to start a new life in a new city with new people. I needed change more than ever, and it happened! Life is going fabulously; moving to the city on my own was one of the best decisions of my life. It isn’t always easy, but with each challenge comes a lesson. I give my mom an endless amount of gratitude, because if it weren’t for her I would have never experienced these amazing life changes. Anything from financial support to coming over after work to help clean my tub, she’s there no matter what. I can’t imagine what it was like for my family when my accident happened, but we’ve all pulled through and came out much stronger people.

 

 

A little place I like to call home…

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Blessings in Disguise

For those of you who know my story and have previously followed my blog, welcome back! For those of you who aren’t familiar, thank you for stumbling upon me (in blog form) and I hope you find some inspiration or at least learn a little something from my shared experiences!

PSA: There will be profanity in this blog, so if you’re not a fan of¬†an¬†occasional curse word¬†or three,¬†this might not¬†be for you.

My ultimate goal in recreating my blog is to be a little more candid with my readers. Also, and more importantly, I want to inspire others in similar situations to mine to become more independent and share some tips on how I survive in the big, rough city of Chicago on my own! I will share everything from my morning routine to what the nightlife is like for us gliders, how I get all glammed up, making new friends, traveling with a SCI and so much more! Before I get into all the fun stuff, I must first explain how I got to where I am today. It was a very bumpy road but it led to great things!

While I was writing my old blog, although many would say it was pretty raw, I was going through an extreme amount of personal obstacles that were hindering my mental recovery immensely, and I was hiding it from everyone. These hardships made it impossible for me to be motivated myself, let alone motivate others with my words. I never let my readers recognize there were any truly deep problems going on, besides the fact that I suffered a spinal cord injury. I know there are hundreds of thousands of other people suffering from spinal cord injuries, in fact there are almost 370,000 in the U.S. alone, who would benefit from me sharing my stories and experiences.

When someone goes through a traumatic injury it affects their entire support system. Your parents, siblings and friends are going to be severely distressed and overwhelmed. My situation, like most, was pretty uniquely devastating for everyone involved. But I want people to see the silver lining in all the suffering and extract the blessings in disguise. My last blog was cut short due to the personal difficulties I was facing. Now, over a year later, I’m finally ready to share this with my following.

About a year and a half ago I had gone from being told I would never feed myself again to walking with a walker. I was beating every odd. The doctors and surgeons who had told my parents I would never be an independent young woman were dumbfounded by the progress and strides I was making, and so quickly. Walking again was my main focus and goal in life. It’s practically all I ever thought about. All the anger and frustration I had built up inside of me was taken out in the gym during physical therapy. I was working with some of the best therapists and trainers in Chicago and boy was it paying off! But even though I was making all this progress and supposedly inspiring so many people, I was rapidly falling into a dangerously deep depression.

A month before my life altering accident my mother asked my step-father for a divorce. A security deposit was put down on a lovely 3-flat in the city. My mom, brother and I were all set to separate ourselves from the family that had been built for over 10 years. And then BOOM… I break my neck and become paralyzed. I was under my stepdad’s insurance at the time, so the divorce was temporarily put on hold while I recovered. This created a huge divide in my support system, not to mention a toxic environment for my grieving family. The negative energy in our home made it unbearable at times. It was going on 2 years of being bedridden unless someone helped me into my wheelchair. So, whenever there was an argument or screaming match going on in the house I was forced to lay there and endure it. The only person I blamed for this hell-hole was myself.¬†I’m the reason they had to stay together, I’m the reason they’re struggling so bad with money, I’m the reason my family is dealing with depression.¬†These were the thoughts that haunted my mind for years. I went from blaming it on myself, to taking it out on myself.

During those fights I withstood I would hit myself, scream and cry while telling myself it would have been better if I died. Usually my brother would be there to console me. He would put me in his truck and we would just drive, but he moved to my dad’s house in Michigan. My dad got very ill, so my brother moved there for a while to help out. His absence really affected me, especially during those loathsome times. We’ve always been extraordinarily close and not having him there really added to my depression. Not to mention, my best friends were starting to drift away from me as well. Most of my friends were the same age as me (22), so they were at the height of their party days. Having to help with the wheelchair and the occasional bathroom trip proved to be too much, and this made me feel like I wasn‚Äôt even worth being friends with anymore. I could count on one hand the amount of times I was invited out with my friends and their friends. I don’t want to make it sound like there was no effort ever made on their part, but any time we did something I was usually the one initiating it. In the beginning it was new and exciting and we were kind of having fun with it, but after a couple of years, taking me out became more of a chore than anything. And who wants to do chores while they’re out trying to have fun? So, at the time I really didn’t have anyone to talk to and it really started taking a toll on me. Horrible thoughts creeped into my mind constantly…¬†What¬†was the¬†purpose of me surviving? Why would God do this to me? What did I do so wrong in my past that I deserved this? Am I ever going to feel happiness again?¬†And most importantly… How¬†the fuck am I going to get out of here?¬†

A long-time friend of mine saw the limitations when it came to my independence. Mainly because getting out of bed was something I still couldn’t do alone. I needed someone to lift me up and sit me down. My friend’s sister is disabled as well and had an electric scooter that she wasn’t using or planning to use in the future. So, they donated it to me, and it changed my life! I could get myself on to it and just go! I would ride down the block and sit by a small pond and just be so thankful to be alone and not be afraid. I could take my dog on walks and not have to worry about him getting loose and running away, because his leash attached to the chair. This totally lifted my spirits and made me much more independent. Most importantly, I taught myself how to transfer on and off the toilet, which eliminated the need for adult diapers. How freeing is that? It doesn’t get much better than trading in Depends for cute Victoria Secret panties! This alone helped immensely with my confidence. Being able to go to the bathroom alone, shower alone and get out of the house on my own were some of the most freeing barriers I’ve broken.

Some say that before things get better, first they get worse. Whoever came up with that saying deserves a big ass fucking award, because my God is it true. One night I was tidying myself up for bed and after I was done brushing my teeth I went to roll through the doorway in my electric scooter. Just as the first set of wheels hit the threshold bump my right foot slipped off the footplate and got stuck between the door frame and the chair. Most people assume that because I’m paralyzed I don’t have any feeling, but I have complete sensation. My tibia (shin) was broken and it hurt like a bitch and a half. Luckily it was only broken ¬ĺ of the way, so no surgery was needed.¬†Are you fucking kidding me? How will I do therapy now? All the sweat, blood and tears that I shed during my recovery were all for nothing.¬†

The broken leg was followed by a very scary complication with my IVC filter. An IVC filter is a little contraption that looks like a mini head scratcher that keeps any blood clots from traveling to the lungs or heart. Here’s a picture.¬†This filter was put in when I first sustained my injury. The filter broke in several places and two pieces of the metal actually completely detached and migrated so far into my liver that they surgically cannot be removed. The first surgeon I went to told me there were a couple more pieces that could break off and migrate at any time, but she refused to take it out because it was “too risky of a surgery”. This scared the shit out of me because all I could think was what if it punctures a lung or my heart? This thing could kill me at any second!¬†Thankfully¬†I found someone who specializes in taking them out. He’s actually the only surgeon in Illinois who does this type of operation, or at least he was at the time. It was a very complicated and challenging surgery. They predicted it would take about 45 minutes, but it ended up taking over 5 hours. He showed me the filter afterwards and it literally looked like a dog had chewed it up.¬†This shit was inside me in order to PREVENT injuries?! Now I see why that other doctor was like uh-uhhh!¬†But it was out, and this was such a relief!!

Throughout the 2 weeks I spent in the hospital because of the filter I only had a few friends come to see me. Friends that I’d had for several years hadn’t even sent a text asking how I was doing. The ugly truth really showed itself then, and I realized I’m the only one who’s going to get me through this. People who I thought would never leave my side had suddenly vanished. I worked so hard to keep my friendships alive after my accident. I let a lot of things slide that I normally wouldn’t have. I let some of my best friends use me in order to better their own lives. Who was this doormat? The old me would have dropped someone so fast if they pulled this shit. I could understand how me being depressed would affect my friends. But aren’t friends supposed to make those tough times a little less terrible? Stick by your side when shit gets rough, not just leave you. At this point I hadn’t made any new good friends since being chair bound, so I think not being confident in that aspect kept me from cutting people off. For the longest time I thought nobody would want to be friends with me because I was in a wheelchair.¬†You¬†know what? I don‚Äôt need this, fuck them!¬†The friends that truly matter are still here, and that’s all I need.¬†If you’re not going to stick by my side during the bad times,¬†then¬†you’re not worth¬†the good times.

Due to my broken leg I was removed from physical therapy and told not to bear any weight (stand) for 3-4 months. Because I did not get consent to return to physical therapy from my doctor, I was put on a year-long waiting list to return. This would diminish all the improvements that I worked so hard for. The last 2 years I completely dedicated my¬†entire¬†life to recovering and within one second all of it was taken away… again. If you’ve ever heard the saying “if you don’t use it, you lose it”, well that applies to this situation perfectly. I had the use of my legs taken away from me twice now, and my optimism for the future was starting to diminish. I thought to myself..¬†What happens if I overcome this broken leg and dedicate my life to therapy again, and then something else happens? I could be going to school, living life and just moving on in general.¬†It may sound like I gave up, but really I just wanted to get on with my life. Every day for the past two years all I thought about was therapy and upcoming doctor appointments. I wanted to travel, go to school, make new friends, move out on my own. I wanted to be a normal 22-year-old, well as normal as possible. At that point I could really care less if I walked again or not, I just wanted to be happy. Making a new life for myself was my new main goal, so that’s what I did!

Pharmaceuticals

One subject I really haven’t addressed on here yet is medicine. This surprises me, because if there is one piece of advice I could give anyone in a situation similar to mine, it would be to become as naturally healthy as possible. That means getting off any medication that is not 100% necessary or does not have a natural alternative (which most medications do). The few main meds that I am mostly against are anti-depressants, pain medication, and baclofen. All of these that I just mentioned are highly addictive and/or dependents. Meaning, your body will become highly dependent on them over time.

I know a lot of people who say anti-depressants are great once you find the one that best suits you. I have a couple of problems with that. First being that you are going to need to test out multiple brands that each have their own side effects and also take weeks to “regulate” into your system. This process could not only take months to be effective, but could also cause problems with any other medications you’re taking or even worsen your depression. Alternatives to anti-depressants are so simple and effective that I have the hardest time understanding why people don’t choose this route. The main thing is your diet. The nutrients you put into your body make you feel the way you do. If you’re a healthier eater and exercise regularly, you’re going to notice a positive difference. It’s as simple as that. If you’re thinking ‘ok.. you just became a paraplegic, eating a banana isn’t gong to help that kind of depression’ you’re right. It won’t, but in the long run, neither will medication. The only thing that will help something of that magnitude is time.

Moving on..

Pain medication. I have so much to say and so much personal history with this stuff that I honestly don’t know where to start. When you’re first injured there is no other choice but to take pain meds, and a lot of them. Unless you want to suffer like you couldn’t imagine. What they’re doing to your stomach lining, liver and kidneys is by no means a good thing and staying on them can cause major difficulties with these organs. But the choice to slowly wean yourself off them when the time comes will not only be hard, but it will probably have some negative effects as well. With a recovery that takes years, it will only be normal that you’d take pain meds for a while (months-years). With my recovery it was also different on a whole other level because it is very hard to regain movement in muscles that are numbed by drugs like Vicodin, Norco and Oxycontin. If you are having trouble weaning off you might want to consider a non-narcotic. This may be a very controversial suggestion, but this is my blog and I feel that if others in my situation will benefit from it, then I will take some judgement. The best suggestion for pain, anxiety, sleeping difficulty, appetite problems, tremor/spasm pain, nerve pain or tingling is cannabis. The best quality it possesses when it comes to recovery is that there is so many forms, so there’s something for everyone. Although, the only downside is that it is not medically legal in every state. Almost every person I’ve come in contact with that are also injured use some form of cannabis.¬†

Lastly, I will strongly urge anyone with any type of paralysis to stay away from Baclofen. If you’re not familiar, Baclofen is primarily used to “treat” spasticity. Usually its used in pill form, but in some cases it needs to be inserted via intrathecal pump (which has the potential to malfunction and cause some serious health problems, possibly ending in death). My experience with Baclofen was not only a bad one, but it took so long for me and the doctors to realize that it was the Baclofen causing my other health issues. With my body being so fragile at the time it was the perfect candidate for a lot of the side effects.

The main ones being:

dizziness (which is terrible for a person with low blood pressure like myself)

drowsiness (which is terrible when you take it 3 times a day and are expected to do aggressive physical therapy)

unusual weakness- especially muscle weakness (which is the complete opposite of what I need)

loss of appetite (which isnt good when you’ve already shed 35 lbs.)

low blood pressure (which a doctor will “fix” with another drug with other side effects)

muscle or joint pain (which is weird, considering its supposed to help pain in some cases)

A lot, right? It took over a year for me to finally realize it was the medicine worsening these issues. When I finally got off it the amount of recovery I saw amazed me. Not only were my muscles and joints feeling completly different, in a good way, but I had so much more energy to go to therapy and kick its ass. When coming off this drug, you have to be very careful and make sure to slowly wean yourself. Reason being, the side effects of stopping it may be even more dangerous than the ones of starting it. I’ll list them just so you can see what I mean…

Convulsions/ Seizures

Hallucinations

Increase muscle spasm/ cramping

Mood or mental changes

Unusual nervousness/ restlessness

It might sounds crazy that I would suggest this, but bananas and avocados are proven to help muscle cramps/ spasms. They’re high in potassium, which helps ease tightness in muscles. As odd as it sounds, it definitely helps me. Also, drinking plenty of water to hydrate your muscles is important. If simply changing your diet isn’t enough, using electric stimulation on the spastic area will surely help!

These are just  a few of the pharmaceuticals I feel strongly about. I could go on about this subject for days. The main reason being that only 4.5 months after I stopped using the majority of the drugs my doctor had me on, I was walking with assistance. This included pain killers and spasm medication. By no means am I saying you will walk again, but your chances are a lot higher with healthy body than with a weak/ sick one. I hope this info is insightful to others in a similar situation.

Getting Stronger

This past week a lot of progress has been noticed not only by people around me, but myself. I’ve said it before, but it’s very hard to see all the progress you’re making when you’re living it everyday. People always say to me “you could not do that two months ago”, and I always think about it and realize they’re totally right. Others who also suffer from a spinal cord injury say the same thing, they don’t realize how far they’re coming until somebody reminds them.

Recently my best friend, Paige, took on the caregiver role for me. I must say I am loving it. Instead of having a random stranger (no offense to care givers), I have my closest friend. She’s also really strong, so doing physical therapy stuff is a lot easier. Anyways, what I wanted to say is the other day at Next Steps she walked with me and the walker. Paige has seen me walk with the walker and a trainer many times, but this time she got to try it. It went awesome! I must say, my trainer has some competition… It was so gratifying to hear someone who lives this injury with me everyday say how amazed she was of how little she had to do, and how proud she was. That was the best feeling ever. It makes me notice how far I have come since that first day. I’m very grateful to have such a dedicated friend who makes my recovery such an important priority.

I have a Power Plate at home, which is a machine that vibrates at high frequencies to contract all the muscles in your legs, trunk and lower back. When I first started using it about four months ago I needed two people assisting me. One on the left leg holding at my knee and hip, and one on the right doing the same. The handle bars also vibrate, making it even harder. Well, now I only need one person there I case my knee buckles or something. Progress is still being made and all the hard work over the last 20 months is paying off in a big way.

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Milestone

Since I last wrote in October a lot has happened. I’ve been very busy the last few months, which is why I haven’t updated in a while. But in retrospect it’s kind of cool to see the progress made in only 4 months. The last time I updated I was just starting to walk with a walker and electrical stimulation on my right leg. It has been a blessing being able to walk with a walker at therapy. It has also been a huge challenge. It can be very easy to get frustrated at your body when you want it to do one thing and it does another. This does test my patience, and I have learned to be much more patient throughout this whole journey. Since last writing I have had the opportunity to test out a Walk-Aid device, which is one of the most amazing things I’ve encountered in the medical world since my injury. Basically what the Walk-Aid does is send electrical stimulation to the muscle that lifts the foot, so when I go to take a step my foot will lift up, allowing me to take a step with my weak leg. I am in the middle of a 30 day trial with the device right now. If they feel it is safe for me to take home at the end if the trail I will get much more practice with it everyday. Fingers crossed that happens!

Patience is not the ability to wait, but the ability to keep a good attitude while waiting.

Mindset

When I took my first step after being injured the feeling that I felt was indescribable. I honestly never thought I would feel what I did, and I don’t mean that as in I thought I would feel a different way, I mean the negatives got to me so much that I lost faith for a second. How do you fix something that is completely 100% out of your control. I was a prisoner in my own body and couldn’t imagine ever being happy in my skin again.

After being admitted into Illinois Masonic for inpatient rehab, where I would remain for over two months, my faith in myself was put to the ultimate test. Surrounding me were all senior citizens who mostly has suffered strokes. That was my home for the time being. You could imagine how being in that setting would not only hurt a person’s confidence, but it also really effected my thought process towards my future after leaving the hospital. What will outpatient therapy be like? Will it be all elderly people there too? Am I going to progress? What’s going to happen to my family? What’s my life going to be like? There were so many questions I had and none of them could be answered.

It took a while after being home to “adjust” to my “new life”. Honestly, I don’t even know if I’m totally adjusted still. Life has gotten better though. Physical therapy and spirituality are the two things I give most credit too. In order to physically excel, you must mentally be stable. That was my biggest challenge, and finding the good in life again was definitely the hardest part of regaining my happiness. Taking that first step was proof to me that if you mentally push yourself to your limit physically you will transcend.

The reason I’m bringing this all up is because recently I was told by doctors to “relax and not partake in any physical activity for at least a week” and was on heavy pain medication after a trip to the hospital because of neck pain. Throughout my unwanted vacation from therapy I was reminded of being in the hospital. Being stuck inside four walls all drugged out is not my idea of fun, not to mention I was very afraid I was going to lose muscle tone from being off for so long and my walking would be affected.

I returned to therapy today and GOOD news, I didn’t lose what I have been working so hard for! Infact, I did my personal best today. I had to mentally remind myself on the way to the gym this morning that if I could do it once I could do it again if I had to. Again, preparing myself mentally paid off for me physically. I took a video of my session today, which I’m really excited to share with everyone. One step at a time.

You can’t live a positive life with a negative mind.

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