"If you're going through Hell, keep going."
-Winston Churchill

Apr 26, 2011

Try me!!

 Let me begin by apologizing for any typos- I am somewhat exhausted, short on time and using Dragon Dictation that sometimes jarbles my thick southern accent!

I hope everybody had a fantastic Easter! Personally, it has been a very busy couple of days! Saturday, I had some friends over where we spent many hours playing trivia game called ‘You Don't Know Jack' on the Wii. It was a blast! I was feeling good and smart winning a lot of games until that night when my brother, Kenny, came over and dominated me on the game. He's successfully deflated my ego! On Sunday, my family gathered at my sisters for Easter brunch, despite the fact it was after 1:00 PM! Between two of my sisters, I have four nephews and two nieces between the ages of 5 and 11; needless to say, family gatherings are usually energetic and loud and Easter proves to be no different! After brunch, we had an Easter egg hunt for the children, which was really fun. When I was a child, we had candy in our Easter eggs, but now it is money and candy! I wanted to hunt for eggs myself! I was told if I could reach them, I could keep them. How hilariously cruel is that?! After all the Easter festivities, the children were dying to get in the pool across the street and my aunt and uncle's house. By that point, we were exhausted and decided to call it a day… Besides, I had to challenge Kenny to a rematch to the trivia game on the Wii. Finally after three games, I won one and that was all I needed. You have to understand, Kenny beats me at anything trivia related so to win one was quite the accomplishment! Sunday night I needed to get to bed early because Monday morning we were leaving early to go to Methodist to see my urologist.

 As much as I love to go and visit with everybody, seven hour round trip in the car makes for a very long and exhausting day. A few weeks ago, I was having complications with my bladder medicine. Unfortunately, I cannot see just any old urologist; they must be specialized to in spinal cord injury patients. Luckily, I was referred to a doctor down here for future issues. My medicine was increased because of bladder spasms and my doctor spoke to me about considering bladder augmentation. As of right now, every 4 to 6 hours I have to get back in bed to catheterize. You can probably imagine how big of a pain this is! I have to schedule my whole day around it, not to mention the process of getting in the Hoyer lift to get in and out of bed. A bladder augmentation would enlarge my bladder to enable me to hold more liquid. In addition, he wants me to consider a procedure that would allow me to catheterize through my appendix. I know this sounds quite odd, when he first mentioned it to me I thought I misheard him. After getting advice from another female quadriplegic, I realized how much independence this would really give me! Not only would I be able to do it myself but I would not even have to get out of my chair. This will also cut down on the number of possible infections you can acquire from in and out catheterizer. They recommend you wait until at least a year post injury for this surgery, so it won't be anytime soon. Apparently, the recovery is pretty harsh, but I know if I have already overcome this much so I know I can push through that too!

As of this moment, Tuesday, April 26, at almost 5:00, I have about 1700 followers on www.facebook.com/rehabforkaty page. The response has truly been phenomenal! The Southern Belle T-shirt fundraiser has gone above and beyond anything I expected. We have even sold a shirt in Boston, Mass.! The deadline is Sunday, May 15; please keep in mind if you are mailing your order to calculate enough time for its arrival. Mailing out on May 10 should allow enough time. Laura, the fundraiser coordinator, will place the order with Southern Belle Monday, May 16. It will take about three weeks for the shirts to arrive. I asked everybody to please be patient, this will be a very large order that Laura, and people who have volunteered to help, will have to organize and sort out in order to distribute. When it becomes closer to the time of arrival, we will post all the details on the Facebook page. I believe at the moment we are considering having a large pickup date at the Beach Park in Pascagoula. Keep in mind if you are doing a group order form, YOU, the seller, are completely responsible for picking up your bulk order and distributing them to the right people. We are trying to make this process as simple as possible and appreciate the cooperation. The order forms can be found at www.rehabforkaty.formyfriends.org, along with links to my radio interviews, YouTube channel, and PayPal donations.  Also, Saturday, May 14, there is going to be a benefit at Thunder's Tavern in Pascagoula. At the moment, all I know is that it begins at 12 PM, catfish plates will be served, the pool and patio will be open, and so far there are four bands scheduled to perform. As soon as I know more details you will too. Another positive thing that has come out of the Facebook page has been meeting other female quadriplegic's who I can talk to. It seems like here on the Gulf coast it is an ‘all boys club’ and while I have no shame, I just find it easier to talk to other girls. You can never have too much peer support.

Speaking of peer support, I was contacted by LIFE of Mississippi. LIFE is an organization that helps people with their disabilities. The nearest location is in Biloxi and in a couple weeks somebody will come to my home to meet with me and assess what I need. They will match me with somebody with a similar injury for peer support and inform me on participating in recreational activities. Apparently, they just recently had a basketball and tennis clinic. I would love to be a part of wheelchair sports! That is part of the reason I am very anxious to get a manual chair. I do not care that I will probably not be any good due to lack of triceps; it will still be a lot of fun! It will also be great to interact with other people with spinal cord injury who have been dealing with it a lot longer than I have. The person I am paired with will also help me to learn how to do self transfers- that will be a major hurdle!! I cannot even explain the excitement or how much independence it will really give me. Once I am able to transfer myself, I no longer have to worry about keeping my mother up late at night and, are you ready for this, think about modifying a vehicle for me to drive!! What a fantastic (and maybe scary) day that will be!! I know it is a long way in the future, but with how fast these 11 months have gone by already, I am sure it will be here in no time.

In my last blog, I mentioned getting the ball rolling with the Disability Rights of Mississippi. It was my advocate who contacted LIFE to contact me. She will also contact the Department of Rehabilitation to make sure I am accepted for the waiver program. The process will probably take a couple months, but it is better than none at all! I also contacted the Shepherd Center in Atlanta, GA, to find out more information on what I need to do to be able to attend their program. It turns out they do accept Mississippi Medicaid, but also mentioned it was one of the hardest states to get approval. As of right now, I still have limited benefits and though I know nothing will happen for a while, at least contact has been made. It is going to be quite a lengthy process and I am going to fight it till the very end! There is no excuse for me not to have full benefits! The lady I spoke with at Shepherd also mentioned loopholes and a scholarship program so I will keep my fingers crossed!

To wrap this up, in case you do not follow the Facebook page, I had a follow-up segment with WHIL 91.3 out of Mobile, AL. If you missed it, you can hear it at www.rehabforkaty.formfriends.org, towards the bottom of the page. I also had a short interview with Magic 93.7, we are still waiting on the audio file and once we receive it, it will also go on the resource page. There is a new YouTube video explaining my Bioness exercises, hopefully I will post another video before the week is over. And stay tuned because this Thursday, the Mississippi Press will be doing an interview with me as well. As soon as it is posted online, we will of course link it to the resource page, the Facebook page, and I will post it on this blog. I think I just about covered everything! Thanks again for your continued support and interest in my recovery. God bless!

ps- here are a couple photos of my therapists and me yesterday at Methodist Rehab
Michael, my physical therapist.

Courtney, my recreational therapist and Candace, my occupational therapist.

Apr 20, 2011

A productive day!

I have been on the computer since 9:30 this morning. While it feels like I haven't done much, I suppose I really did get a lot accomplished. A few days ago, I contacted who I consider to be my mentor at Methodist rehab and asked her if she knew of any resources and/or people I should contact. She wrote a fantastic e-mail on my behalf and sent it to Disability Rights of Mississippi. This morning, I received a phone call from a lady who works there. For those who didn't know, I am on “limited” Medicaid, which makes absolutely no sense. The state programs concerning Medicaid, Mississippi Department of Rehabilitation, Vocational Rehab, and Life of Mississippi do not work together. You must individually call each program to sign up and find out what they can do for you. They make the system so confusing. Today I learned about a waiver program. Having a spinal cord injury, I automatically qualify for this program. HOWEVER, despite the fact I am eligible, I must call my counselor and request to be on the waiver list. Now why, when I'm automatically eligible, must I specifically request for the assistance? I was not informed of this until today, nearly 11 months after my accident. The Mississippi waiver program will provide me with the personal care attendant, which will greatly help my mother in taking care of me. In addition, once I am placed on the waiver list I automatically receive full Medicaid benefits. With full Medicaid benefits, I am granted another 30 days of inpatient rehab in July. This is like a dream come true. However, if I am to walk again- while 30 days is great- it is still not enough. I e-mailed the Shepherd Center in Atlanta, which is one of the top 10 rehabilitation centers in the country, requesting information about admissions and any financial assistance programs. Mississippi Methodist was a little over $15,000 a week, so I cannot imagine the cost of Shepherd. Walking again, though, is priceless. 

So that was a big chunk of my day today. In other news news, the philanthropy of the Sigma Nu chapter at Ole Miss is paralysis. Each year they have a big charity to raise funds for a beneficiary who is most deserving. Today I had to write my story basically selling myself and why they should choose me. The deadline is Friday and I have no idea when I will hear back. It would be absolutely amazing if I got this. On top of other fundraisers and benefits, this could really help me towards my goal of going back to inpatient rehab. Speaking of other fundraisers, the Southern Belle T-shirts sale has been absolutely amazing! If you're unfamiliar with this fundraiser, please visit http://www.rehabforkaty.formyfriends.org  for all the details. So far, we have sold over 100 shirts! The deadline will be May 15. That same weekend there is to be a band benefit at Thunder's Tavern in Pascagoula. I do not have many of the details yet but as soon as I do they will be made available. Media wise, things are also moving along. 91.3 WHIL out of Mobile, AL, did an excellent radio interview with me which can also be found at the above link. I also finally posted a YouTube video and hope to follow-through with many more. To watch the video, please visit http://www.youtube.com/user/RehabForKaty. In addition, Walter Brown of 93.7 will have me on his show Friday morning, April 22, between 8-9:30AM. And finally, WLOX will be doing a story on how social media has affected your life that is set to air the last week of May. I will be one of a few who has an interview for this particular topic.

It has only been eight days since I started http://www.facebook.com/RehabforKaty and the response been truly amazing, almost overwhelming. We are almost at 1600 followers and I could not have asked for more. I'm so full of hope for things to come. To be honest, even if I had the option to go back to June 13 and change it all, I would not. I have learned more about myself, my relationships with others- who would stay by my side and who cannot handle it- I have grown closer to my family, and my relationship to God, my faith has been restored and I would not trade that for anything. I count my blessings each and every day. It is so important to be thankful for what you have, for without my family or my friends, I do not know where I would be today. Again, I thank you all for your support and prayers. Miracles do happen, and I will be one of them!

Apr 14, 2011

we must be the change we want to see in the world

This may be quite lengthy, but I'm going to treat this entry like it is my first, as I anticipate many new readers coming from my Help Katy back to Rehab Facebook page. It is a very detailed account of my story. Hopefully, my whimsical wording will keep you entertained enough until the end. I'd like to begin by thanking each and every one of you for your interest, support, kind words, and prayers. Without such a great family, friends and strong support system, I would not be nearly as far along. With that being said, let me take you back 10 months ago to the day of the accident.

It was a hot June day and finally the weekend I've been looking for to have arrived. A year prior, I made a rash decision to move to New Orleans, LA, leaving behind my best friends and people I considered family. This canoe trip was a group of 15-20 Olive Garden coworkers/friends, many I had not seen for over six months. Despite the fact I had been counting down the days, when Saturday, June 12, finally arrived, I felt funny. Not ha ha or he he- just like something was amiss, yet I could not put my finger on it. For a split second I debated on not going, simply because I worked as a waitress, usually 40+ hours a week, and still living from shift to shift. Regardless of my financial situation I decided I needed a break and left for Hattiesburg. I enjoyed a quiet evening with close friends and went to bed early knowing the next day would be a long hot day out in the sun. 

Up until the time of the accident, the day had been perfect. We had been taking our time at Little Black Creek, slowly making our way towards the rope swing at the end. We docked off at a point called “The Gator Hole” so we could cut into a watermelon and rest up a little before the last leg of the trip. There was a large sandbar and a drop-off point, meaning where we parked our canoes was about 2-3 foot deep and then drastically dropped to 6-8 feet deep. I plopped down in the sand about 20 feet from the water with a small group of friends. The next thing you know a friend and I began running towards the creek to jump in. When I saw people shoulder deep in the water I assumed they were afloat; however, before I realized they were sitting in the shallow end, it was too late. Mid-air I knew. As soon as I hit bottom my whole body instantly went numb while I remained conscious. It was undoubtedly the scariest moment of my life. While my mind ran 1,000 miles a second, my body lay still face down in the creek. I knew my friends knowing me would think I was being the jokester I so commonly came off as. I immediately begin praying that someone would pull me up in time. After what seemed like an eternity, when I thought my lungs could take no more, a friend pulled me out. It was not until the moment I was able to speak that my friends knew something was wrong. They carried me to sandbar and stabilize my neck. At one point, I had convinced myself it was just the pinched nerve and not wanting to ruin the trip for everybody told my friends to just put me in the canoe and keep on going. Luckily, they knew better. Park Rangers were stationed along the Creek and fortunately one close by saw what had happened and reached us within minutes. Although inside I was scared and panicking on the outside I remain calm, cool and collected. I relayed all the information they needed to know to contact my family and before you knew it there was a helicopter to airlift me to Forrest General Hospital. Soon enough, I was surrounded by doctors and retelling my story of what had happened. After x-rays and a CAT scan, my doctor said I immediately needed surgery for my c5 spinal cord had been severed and they needed to remove the fragments. This would be my last memory for the next two weeks.

When I finally came to, two weeks later, I was flabbergasted by everything. It turns out I had been on a drug called Versed which does not allow you to make memories. My family began to fill me in on the events of the last two weeks, they had come from the coast, along with many family friends, loved ones and people I've never even met to come and show their support and pray for me. I learned that I've had pneumonia in my lungs, placed on a breathing tube that I kept trying to pull out, and although I could not remember the last two weeks, I had been awake and always kept a smile on my face, unable to speak but expressing my emotions through my eyes. By the time I could remember, they had done a tracheotomy to help me breathe, however, meaning I could not talk-one of the worst things you could do to me! Not that it stopped me; I ran my mouth a mile a minute and people just had to learn how to lip read. At this point, I cannot move my arms pass my biceps nor did the doctors think I ever would. These doctors don't know Katy Blake. I spent a little over four weeks in ICU, I never stopped waving around my arms as much as possible to regain my muscle and I never stopped smiling. By the time I moved into a room on the sixth floor, I was able to at least scratch my nose. My right arm, which is my dominant, progressed three times as fast as my left. I spent one weekend out of ICU before horrible Monday when a mucous plug caused my breathing to almost stop and resulted in a code blue. On top of this, my neck brace which was promised to come off had been put back on for an additional month. It was not over yet. During the next two weeks back in ICU, I became extremely stick. Unable to eat and running a high fever, I went from a healthy 135 pounds to 110 pounds. It was soon discovered that my feeding tube was not properly sealed and emergency surgery would be needed. After these two weeks, I was finally back on the sixth floor for good, little did I know the length of time I would be there. While in ICU, I had developed a pressure sore on my backside that refuses to heal. Because of this I had to stay in the hospital for another five weeks before minor skin flap was done to make it heal.

Finally, September 5th, I was ready to go to Mississippi Methodist Rehabilitation Center. Mississippi Medicaid was granting me a mere two weeks of rehab. I have had Blue Cross Blue Shield insurance my entire life prior to the 10 months before the accident.  My mother had been put on Medicare and could no longer afford my insurance payments. As much determination that I had mentally, the first two weeks I was not able to physically push myself as much as I wanted. After being bedridden for three months, the pain of reusing and regaining my muscles deterred me from making much progress. The entire staff of an MMRC had been talking to me about vocational rehab. Now, you would think in the state programs you sign up once and it distributes to all the disabled programs in Mississippi. This is very far from true. At the last minute we applied for vocational rehab. In order to qualify you must be able to be rehabilitated enough to be a functional member of society. And to the surprise of everyone at an MMRC I was denied. Let this be a lesson, you don't poke the bear. Long story short, many phone calls later, my angry mother had gotten me vocational rehab and the night before I was supposed to leave, I was granted another two weeks of rehab. I put forth 110% of my effort and strength in order to strengthen and be able to adapt my new lifestyle. In the four weeks at rehab I learned to feed myself, put my shirt over my head, paint, play the Wii (which is a great workout), put makeup on the right side of my face, and learn the tools I needed to be able to use the computer and my cell phone. During the last couple of days of rehab I was finally strong enough to be able to try and stand, however, lack of time prevented me from doing so.

Upon arriving home in Pascagoula, I began outpatient therapy at Singing River Hospital. Despite my determination, I was unable to work as hard as I wanted due to lack of proper equipment for spinal cord injury. After the New Year rolled around we had to reapply for Medicaid in which I was denied. All therapy came to a stop and my prescription medication tripled in price. We have learned this lesson once, don't poke the bear. A long and frustrating to and a half months later, I was granted limited Medicaid. While it covers my prescriptions and general doctor visits, it does not include dental, vision, etc. nor any additional rehab. During this time, things seemed so bleak yet there were a few happy moments. Vocational rehab purchased two Bioness hand units, at $6500 a pop this never would've been possible otherwise. The Bioness stimulates the muscles in my hand to open and close, allowing me to use them in normal everyday functions and eventually retraining those muscles to do so on their own. About a month ago I began outpatient therapy in Ocean Springs. They have been very hands on and working with me very diligently. As wonderful as it has been, six hours a week of therapy cannot compare to the six hours a day of the inpatient facility. Without the proper equipment and therapist my recovery can only go so far.

From day one, I never felt sorry for myself. Even as a child I always remember believing mind over matter. With hard work, determination, and a positive attitude you can achieve anything you put your mind to. The first time I cried in the hospital was when my family read my Caring Bridge posts. The overwhelming support and love from people I knew to people I've never met was incredible. I felt like the entire world was behind me. God truly answers prayers and he was very busy in June 2010! Regardless of my situation I felt like I was invincible. Miracles happen every day and I intend to be one. I know I will walk again if I get the proper rehab. But let it be known if I never make it back to inpatient rehabilitation I am forever grateful to just be alive and inspiration to others. My injury could have been so much worse, it could have been complete, it could have been a c1-c4, or it could have been a brain injury. I have always believed everything happens for a reason though we may not know it for quite some time. I feel like I was forced to grow up fast- I lost my father at age 11, dealt with people close to me having addictions problems, suffered many heart aches, began working at age 14 and moved out on my own at 18. Looking back, it seems like all my trials and tribulations were making me stronger in getting me ready to deal with the greatest obstacle of my life. I live without regrets and I learn from my mistakes. Life is a beautiful thing many of us take for granted and many of us do not realize it until it is too late. I am not perfect, never pretended to be and never will be. But I'm honest with myself and others and believe there is good in everybody. I always tried to live my life by the Golden rule “Treat others as you would have them treat you.” I always believed in karma and now it seems like it is coming full circle. All the years I put others before myself and now people are selflessly reaching out to help me. May I spend my whole life returning the favor. Once again, thank you for reading and supporting me and God bless.

Apr 3, 2011

Live for today

It is so hard to believe it's already April, the weeks go by so fast... It feels like just yesterday I was in ICU at FGH. My what a long way I've come. Since June 13, since the New Year, Hell, since last month. Of course, day to day, it's difficult to see progress. But stepping back to look at the big picture, Im astonished and very proud. Lately I have been working on my triceps and already I can lift my arm higher than I could a few weeks ago.

Now, in addition to having a PT come to my house to train me on different exercises, I have begun going to Ocean Springs to attend outpatient rehab 3x a week. This past Friday was my first official appointment and boy did I get a work out! I started with respiratory therapy, since my lungs are not back up to par, which is completely my fault for not keeping up with my breathing exercises like I should (but now I will), I still exceeded expectations. Next, I was transferred to the mat where I worked on triceps and trunk control; sat unsupported using my arms as props; and was placed on my stomach where I used my upper arms to do a push-up like motion. Needless to say, before the night was over, I was feeling the burn- and it felt good.

As far as the Bioness go, I am awaiting approval from Medicaid to have occupational therapy. Until then, my $14,000 paperweights sit in their cases, still in their original packaging from the distributor. Sometime this week we will find out if I have been approved or not for OT, if not vocational rehab will supposedly pay for the OT sessions to allow my mother and me to be properly trained on how to operate the Bioness. As you can imagine, Im very anxious. Although I have learned many ways to adapt, to regain use of my hands and fingers would be overcoming a major obstacle I look forward to.

Yesterday I started a new muscle relaxer. Previously I was on Baclofen, and had been since August, which by now the effects had greatly worn off. The new one I began is much more potent, and while it controls my spasms, it leaves me a little loopy in the process. I sincerely hope that soon the side effects will subside so I can continue to progress without feeling like a zombie.

I'll leave this update with a realization that's been on my mind for a few days...
If I had known then what I know now, my entire life, and the people in it, would have been completely different. But that's not the way the world works. There's no use crying over a broken neck. You can't always control what happens to you, nor how people close to you react, but you can control how you handle each and every situation. You learn to adapt and improvise. The longer you hold on to the past, the harder it hurts. You can't always fix your mistakes, but you can know better for next time. Yesterday is gone and tomorrow is never promised. Live for yourself today.