IM MOVING!!!!!

IM OFFICIALLY MOVING MY BLOG TO ANOTHER SITE. THIS SITE GIVE YOU AN OPPORTUNITY TO COMMENT WITHOUT HAVING TO SIGN UP WITH GOOGLE OR ANYTHING LIKE THAT. SO CLICK ON THE LINK BELOW FOR FUTURE POSTS. ALSO IVE REPOSTED EVERYTHING SO IF YOU WOULD LIKE TO COMMENT ON A PREVIOUS POST YOU CAN. THANKS EVERYONE!!!!!!

www.kasrecovery.wordpress.com

My 10-second rule

I’ve been thinking about making a change on my blog page. A lot of my friends and family who read this are telling me that they would love to comment on my page but cant because of the site, and the difficulty it takes to actually set up accounts just to comment. So I’m looking at a possible change in the future. Ok now to the important stuff, when I say that I’m talking about me talking about me. The past couple of weeks have been pretty normal, the usual a lot of ups and downs. I met a friend at Shepard center who is going through a lot of similar things that I’m going through. She is pretty fresh off her injury so naturally the adjustment is hard for her rite now. So I just try to be there for her. A lot of our thoughts are alike along with the things we are going through. It’s crazy because I never thought that I would be the one helping some body and giving advice through this. I know I’ve come a long way, and this struggle is pretty intense. I just want to be there for her like my family was and still is there for me. One big thing I’ve realized about all of this is that you’re not the same person you were before you ended up in you condition. It’s almost like starting a new life and starting over. You have to learn everything all over again. Sometimes I try to think of myself as a newborn baby so I wont get so mad at myself when accidents happen or things don’t go normally or as they did before my problems started. It takes months or even years to develop these things. And while I’m dealing with your new learning curve you have to still deal with managing your emotions. Just last night I felt myself a little down because I wasn’t able to be out and about like I was a year ago on a weekend night. But I had to remind myself that that was then and this is now, now being my new life. I also give myself a 10-second rule to get depressed. Let me give you an example, I started taking baths upstairs in my old bathroom. So I literally bump up each step till I get up stairs. Then get in a rolling chair to get to the bathroom. Being up there for the first time was surreal I got to see my old room for the first time since March, and my old bathroom. So naturally I became depressed. After then is when I made up the 10-second rule. Each time I go up there to my old room and bathroom with my parents helping me I only give myself 10-seconds to get depressed and feel sorry for myself then I have to immediately find a way to get in a better mood. Just some of the many tricks you have to teach yourself in order to progress in your new life. 

It's Always Sunny in Southern California

 

Hello world so since the last time we spoke a lot has happened. I'll try to talk about everything, but if I don't get to it all I'm sure I will some time in the near future. As I write this I must inform you that I am on a flight back to Atlanta. My mother and I spent a couple of days in Los Angeles visiting  my sister and attending an NMO convention they were having out there. Let me start off with the good stuff. LA is awesome. I love the city. Love the vibe. It's like a whole new world a world different from that of Atlanta, Ga. The best way I've been expressing the city so far "It's different not a bad different more like a breath of fresh air different. I only got to see the city for one day and it was pretty much from the passenger seat of my sisters car. Half because my stomach felt horrible all day and I didn't want to have to waste time getting out and stuff I wanted to see it all in the time I had. But from what I saw I was intrigued and I hope to visit again in the near future. I also have to go back and visit my sister more it was quite apparent she missed us. By the way she is doing very well for herself out there. She lives in a beautiful apartment in downtown LA walking distance from Dodger Stadium and no more than 5 min from where the Lakers play. I have to I was impressed, proud and jealous all at the same time. Impressed because I always knew she was making big moves out there but to see it is totally different. Proud because this is my sister we are talking about here. I almost got on the social networks to show off the pictures of her place, but I didn't. And jealous because I wanted to be the one to get away and do my own thing, or at least want it also. Before my last relapse that was my goal. My goal was get a good paying job, and eventually move out my parents house to somewhere out of my element to somewhat start over. I even wanted to see the world at one point and time. I can remember when I was younger trying to sign up for the Air Force behind my parents back. Then once it was close to time for me to go all I was going to do was say was "l already signed to go. I have to go now." But once they found out about my disease they turned me down. Seeing my sister in this new city just brought on the same old feelings of why does it have to be me, I'll never get to do that, and hating my current situation, basically the same old song and dance more or less. After a while I started to get depressed and that feeling is still lingering around to be honest. As for the NMO convention it was a range of things. If I had to sum it up I would say it was boring, informative and depressing. Boring because some of the things they talk about I had no clue what they were talking about. So I would dose off from time to time or just play on my phone. Informative because when I did understand what they were talking about I learned a lot of good information, like the possibility of a cure. It was depressing because a lot of that good information that I learned made me have to reevaluate some of the thoughts in my head or future ideas I had for myself. I will give you an example; they say that it hasn’t been fully proven that NMO is a hereditary disease. But from what they are seeing it seems like most people who have it usually have family members who also have some type of autoimmune diseases. Anyone who knows me knows I want a son. More than a wife or girlfriend I want a son. But to have to see your kid struggle with some type of autoimmune disease and to know that you had something to do with the struggles your kid is going thru I’m not sure how I can handle that. Why bring a child into this world to know the possibility is great of him going through some of the same problems you are going through or worse for me to do something like that would be selfish. I don’t have to have a seed that bad. After hearing things like that I mentally checked and had to go back up to my hotel room for a while. Still overall it was a great trip. I’m happy I went and hope to get out of town more in the future. I realized from this trip I don’t leave Atlanta to often and that’s not good.      

I'm sorry for this one

I was doing so well this week until yesterday. I felt like I had reached some milestones such as me being able to stay home by myself during the day. This was huge for me because I always talk about not having privacy; this allowed me to gain some of that back. I was also able to leave the house by myself get on the bus and ride to downtown Atlanta. I was impressed with myself on how I handled it so well, because I ran into a few issues going from place to place but I always found a way to make it work out for me.  Then yesterday came, for those of you who know me well you know I don’t really find myself in church much. Ok lets call it what it is I haven’t went to church in over two years, probably longer than that to be honest. Yes over two years, and that with the constant nagging from my parents for me to go every Saturday I might add. Well yesterday “drumroll please” I finally went to church, Im not sure if this was such a good idea. Now before I begin I have to say that I love and appreciate everything that everyone has done for me and I even appreciate the spiritual things. I mean I really and truly do. When people say that they have prayed for me I am very appreciative of that because you didn’t even have to think about me but yet you did, that to me in it self means the world to me. I have to say this because I have learned that this is a sensitive subject and people always seem to get upset if you don’t agree with them or feel the same way they do. Now lets get back yesterday, going to church brought up old feelings of boredom, irritation, and annoyance. Boredom because I rather be home watching the LSU vs Georgia game, Irritation and annoyance because I had about 30 to 40 people walk up to me and say that there prayers have been answered and it’s a blessing to see me out the house. As people continued to say that and make statements such as God is in control and I will be healed by the grace of God I began to get more and more irritated. I actually need to pause for a second because as I write this rite now my blood begins to boil. Because what I can’t understand is how people see can see all of this negative happening to me and say “God is in control”. When people say this too me I almost always want to say God is in control of the fact that I cant walk rite now REALLY!. Scratch that how bout the fact that I have to take about 20 pills a day so I wont be in extreme unbearable pain, or won’t even be able to move my legs. How bout the fact that I have to wear a depends because at any moment I can defecate and pee on my self, YES ME A GROWN MAN AT THE AGE OF 26. What about the fact that I take showers outside, or that I sleep in the living room, or the fact that my family is going in serious debt trying to pay for medical bills and accommodations so that I can function as a human being. Well if God is in control of all this then he failing in a lot of areas if you ask me.  I’ve also heard that maybe this is happening to me so that I can come back to the church. What about the other people at the Shepard center or around the world who have spinal cord injuries did God do this to them so they can come back to church too. If so that’s a sick and twisted way of going about things if you ask me. I’ve heard that maybe God was trying to change the path I was heading down or change me as person. To be honest I don’t think I’m a bad person in fact I think I am too nice in a lot of ways, so that’s the person who needed to be changed. That also gets me to think about my friend Cassie who has NMO also who I don’t think has a bad bone in her body, God couldn’t have did this to her for that reasoning. If this is the case I can give you a numerous amount of names of people who I have encountered in my life who this should happen to then. I’ve been avoiding talking like this because I know many of the people who know me and read this are very religious, but I had to get that off my chest because this is the way I feel about it all. Sometimes I hate the fact that I grew up in a religious background because when everyone feels one-way, I’m the black sheep. The black sheep who just needs more prayer so he can change his way of thinking. I’m sorry if I offended any of my readers, Im sorry Ill try my best to stick to the happy feel good posts from now on.

State of Mind

So again I really need to get better with posting. Ive decide to set a goal for myself to a post at least once a week even if it's short or doesn't have much substance in it. I feel like sometimes I maybe skipping out on vital info by posting ever couple of weeks or so. Either way I been good for the most part. Still learning day by day about my condition and how to work with it. It's crazy all the paraplegics I've met have been so great and helpful with anything, and I do mean everything. I could remember back in April when I first lost the use of my legs I was intruded by my physical therapist to a young lady named Cassie who had NMO like me. After meeting Cassie I think my outlook and mindset began to change on being a para. I could remember her walking in the door with a smile and me thinking what is she happy and smiling for that has to be fake. But after spending an hour with her I realized that she was genuinely happy. What is even more crazy is that her story is worse than mine. My situation with my legs progressively got worse a years time but she littery woke up one day and could not move her legs. Also I was able to immediately seek help and physical therapy when this started. For Cassie coming from a small town in Oklahoma the doctors had no clue how to help her. So for years she was not able to receive the proper treatment, needless to say this caused things to get worse for her before they got better. Cassie lost the use of the motor functions in her hand and went blind for a year. Along with all of that she was never able to receive physical therapy because her insurance didn't want to pay for it. But the will on this girl is amazing. She still went on to achieve her doctorate in science and is currently traveling the world breaking records and winning medals for wheels chair sports such as cycling, shot-put, and track and field. This girl is totally amazing. If meeting this girl won't inspire you then it's just not meant for you to ever feel that emotion. I personally felt a lot better about everything after meeting her. But that's how all the other paraplegics are also. I've realized that not everyone could be in the position that we are in and take it in stride. It's almost like we were chosen for this. That's the mind set that everyone gives off. It's definitely something that I want to adopt for myself. So even though I'm no longer in therapy I've been trying to still do things to further myself. I've been pushing the trail by my house with my sister and cousins. I'm also thinking of possibly going back to school, which is big for me because after six years of going to school and not achieving anything it would be good to get something under my belt. Well see how it all works out though. All I know is that my state of mind is something that will make or break my new and old endeavors.

Being Content

Being content with your life is something that I don’t ever think I will be. I can imagine myself being 50 years old and still wanting to tweak something about myself. I remember when this all started happening meaning the relapses were coming one after the other. I was so depressed. I knew at the rate I was going I would eventually end up in a wheelchair. I thought that there was no way I could be happy living my life in a wheelchair. To be honest my depression was so bad I ended up in physic ward for about a week. At that point the thoughts that raced through my head we that there was no point of living if I was going to be in a wheelchair. That week in the physic ward was the last time I saw function in my legs. In fact I literally walked into Emory Hospital that day and haven’t walked since. After that week I was then transferred over to the acute rehab side of the building. I ended up staying there for a 3 to 4 weeks. I could remember being totally convinced that I had to walk again, and that I was going to make it happen. While in therapy I would strain every working muscle in attempts to get some type of movement out of my legs. I was trying so hard that I could remember at one point straining my neck in attempts to achieve movement, which left me in extreme pain for about a week. I continued to tell my physical therapist I want to walk again, and I would focus all my efforts towards that. What I didn’t realize is that the amount of pressure I was putting on myself made things worse for me. By telling myself that I was going to get better and not progressing like I wanted kept me in a deep state of depression. I can look back at that now and be happy or at least satisfied with the progress I’ve made psychologically.  Though I’m nowhere close to where I need to be, but by slightly adjusting my attitude towards being in a wheelchair is a step in the right direction. I’m not saying it won’t be difficult, everyday I find out something else that I’m going to have to learn to do differently. But what I’m also learning is that literally any and everything can be done from a chair. So despite my disabilities nothing should hold me back. 

YOU WILL WALK AGAIN

Well people it been a while since we last talked. Ima try catch you guys up to speed with everything. I'm still at the Shepard Center. They have switched me to a different program though. The last program I was in was really dry and boring and I guess they saw the irritation and boredom on my face, so they switched me to something they call "day program" which consist of me being at the center from 9 to 4 everyday. Which is a lot better than me coming downtown every couple of days for a hour session then going back home. It's crazy because I actually like it. It's almost like a mini community here and they are teaching me not only how to function for myself in a wheelchair but that you can embrace being in a chair and there's nothing wrong with that. I definitely can say that I needed this. It's hard sometimes to embrace the wheelchair situation when your family and friends are constantly telling me "YOU WILL WALK AGAIN". Then I would start to believe it, and put all my efforts into walking. Then when I continue to wake up with no movement in my legs I would get depressed. It was like a never ending cycle that continues and still continues to this day. I could remember last month I was such a dark place that I didn't even want to write on this blog. I felt like what I had to say would probably be best left inside my head and not for the public to see. You see my birthday was last month and I turned 26. The whole month all I kept thinking about was the year before and how depressed I was that I was turning 25, still living in my parents house, still didn't have a solid career, and I was nowhere near financially where I wanted to be. I thought about that and compared it to this year and all those things remained the same only I was adding that I no longer had the use of my legs. Those thoughts swarmed me like a bad disease. Though I still deem these thought to be very true I'm attempting to roll with it. No more late nights begging and pleading with God for my legs back. I have to focus on what I can do for me and that is learn to embrace it for what it is. And if so happens that one day I do get my legs back I will roll with it just the same. Not to say Ive fully grasped this concept yet but it is definitely a seed I'm trying to plant in my brain now.

My month!

I have been really bad with posting. To be honest I've been in such a dark place that I've choose to not to post and share my thoughts. I will return soon but in the mean time I will post some pictures of the month I've had. 

Hot or Cold

I don’t know where to begin today. So many things going on that it’s got my mind all over the place. I’ve officially started my physical therapy. Have a full schedule and everything. Yea it took a couple of months but I now go to Shepard Center three times a week. My family is ecstatic about it and continues to say that this will get me back on my feet. I love their enthusiasm but I honestly wish they would stop putting those thoughts in my head, because when I start to believe that I begin to get into a mode of waiting for it to happen. My life is going on rite now and I continue to waste time “waiting to get back on my feet”. Time is something we will never get back so I have to be careful how much time I sit around waiting for this to happen. What if I never do? I think the toughest part about all of this is the balance of the two beliefs. The belief that you will get back to 100 percent and the belief that this is what it is and your life may just have a wheel chair in it permanently. It’s weird because you almost have to straddle the fence with the two ideas, and I was never one for that type of thinking. At a young age I decided that I when it comes to beliefs and ideas I would either be hot or cold, and never lukewarm. So it’s hard to change the way you think but this what I have to do. If I have to keep both beliefs in my mind I have to learn to do that. I told a friend today that things will change and I will try to go back to managing my life and moving forward with the situation I have. No more waiting around but starting to live again, and at the same time still work hard at getting on my feet. That way if I never get back on my feet at least Ill have the life I built for my self.   

Weight shifts

It feels like I haven’t posted in a while. This is probably because I haven’t. I again apologize for this. Well let’s get to it, this week was the week of my first evaluation at Shepard Hospital and I must say it went well. I like it there. It’s almost like a mini community for people with disabilities. During the evaluation the physical therapist had me do a couple of things to test my range of motion and test my current abilities. Of course after everything I had to ask if I would get back to normal and she said it was to early to tell and that she would have to work with me some more. So I think I will approach the question again in about three weeks. After we were done they said there were going to call to set up a schedule for next week but I haven’t heard from them as of yet and to be honest I’m getting kind of restless. You see I understand that I have a six month window where my likely hood for getting back to full strength is the greatest. My relapse happened at the beginning of April so that means I’m already nearing the end of my 3^rd month, and I’m not getting a little anxious about everything. But regardless I think they can help me. She seemed to know a lot about my condition and told me things about myself I didn’t even realize. One big thing is that I “weight shift” without thought. I know a lot of you guys are like what is “weight shift.” Well the best way to explain it is have you ever sat on a hard bench and you butt began to hurt. Hurt so much to the point that you would have to get up. Well this is because we have the ability to sense when we have been sitting in a certain spot for too long and blood is not flowing to that area of our body. Well in the cases of someone who has no sensation or weak sensation in those areas such as myself there is nothing to make us aware that we need to shift our weight or get up and let blood flow back to those areas. So every 30 minutes we have to shift our weight to one side for a minute, and then to the other side for another minute to prevent skin sores. Skin sores in some cases can be really hard to treat and can even lead to serious infection and death. In fact we all know Christopher Reeve who played Superman for many years but fell off a horse, which left him fully paralyzed. He died due to a skin sore infection. Me doing “weight shifts” subconsciously means that I’m being to get more sensation back which is a good thing. So I ultimately have to be thankful rite? As far as everything else goes I have to continue to have patience that things will fall through.

Happy thoughts

You know when you get the feeling that all signs point upward, that the universe is trying to tell you something. The last couple of events that has happened to me has been like a breath of fresh air in a room that reeks of depression and bad thoughts. I hate the way I think sometimes because I let my surroundings dictate my thoughts. Something I deem bad happens to me and I’m in a bad mood, something I consider good happens and I’m in a great mood. Whereas I wish I would rid my mind of all the bad thoughts and only think happy and positive thoughts regardless of my surroundings. I was reading an Instagram post about a guy who was in pretty bad condition. He had cancer and the doctors told him he had two weeks to live. That man survived and is living a full and healthy life today. While reading his story I discovered that he was not able to walk and was bed stricken for 8 months. That was the part that hit home for me. That exactly how I am right now. This will the 3^rd month that I have been bed stricken and unable to walk, and of course the doubt comes in my mind that my normal abilities will never come back to me. A lot of the time I feel like I’m regressing instead of progressing. The ability to move my toes came back, but as of or right now I am no longer able to move them. But regardless I want to believe like this guy did. Easier said than done, it’s hard to believe you wont crash when you’re driving blind. But I do know one thing is for sure giving up and throwing in the towel is not an option.  As for my progress nothing significant this week, I continue to strengthen my back and trunk with exercises each day. This has been helping me, but a part of me is waiting until I start at Shepard next week Tuesday. Which I hate because I don’t want to rely fully on them, I want to rely on my self also but I can’t help it. Either way, lets see what happens I’m crossing my fingers for good things.

6.6.13

I know, I know it's been a while since my last post. I really need to get better with posting but alot of time I'm either sleeping or at some doctors appointment. Sometimes it get hard to find the time for this. But I will stop myself right there because that sounds like in excuse and I hate those. I just need to do better. At this point I do see some type of improvement. The improvement is really small, but I am starting to notice things like transfers and getting my legs to move in a different position to be easier. I can't wait to start at Shepard to see how they can help improve my situation. Regardless I just have to be patient and persistent. I've been trying to do small workouts for my truck and back. I've seen much improvements with being able to sit up and make movements without back support. It crazy because I want everything to happen so fast but it doesn't happen like that. I wish I can wake up tomorrow and everything be back to normal or better. But that's farfetched for my situation. Throughout this whole process patience has been the number one attribute that I've learned to have and value. If you can tell from my previous post and this one my mood is alot better these days. I'm not sure why that is. Maybe it's because I can kinda see the light at the end of the tunnel. Though its so far away it looks like a spec or star. To be honest I'm just happy I can see it. My cousin told me the other day he can't wait till this is all over regardless of the outcome. I have to agree with him. If Im going to be walking or bound to a wheelchair for the rest of my life it really doesn't matter. Of course I would love to have one outcome more than the other. But at this point I just want to close this chapter of my life and move on to the next one.

5.30.13

It's 3 in the morning and I'm up. A little bit anxious yes because tomorrow will be the day where I start to receive my medication for NMO. It's weird because I feel like I have alot riding on this. When you look at you future you never want to look at it in a negative light. You want to see youself happy and successful doing whatever it is you wanted to do. That's what drives you to achieve and forfull your dreams and goals. For the past couple of months my future in my mind has looked so dark if I were to put my hand up in front of my face I wouldn't see it. But this week has been different I've started having thoughts of hope and progress and thoughts of a future where I can once again accomplish the things I've always wanted to. The thing is that scares the hell out out of me because I don't want to set myself up for disappointment. It's like my mind attempts to be optimist but because of my past experiences its hard to let go of the pessimist state of mind. I don't know which way to lean. All I can do is hope for the best, but i would lying if I said my mind wasn't all over the place about this.

5.25.13

It's been a few days since my last post. I'm not sure if I mentioned this last time but I was released from the hospital on Monday. For most people they would be ecstatic about this, me not much. Being home means living in a living room where your a side show for all incoming and outgoing traffic. It doesnt allow me any privacy what so ever. It also reminds me of my shortcomings in life giving the fact that I'm soon to be 26 and still live with my parents. But one thing i can say is that my parents have been very, very supportive and accommodating throughout this whole process. I can argue that they have become too accommodating towards me. But I can look in there eyes and see that all of this is rough on them too so I can't fault them for doing anything they can to help. I wish I could say I had some forward progress news for you guys, but I don't. To be honest things seemed to have backtracked a bit. I'm getting alot more spasms then usual and like when everything first started I'm getting excessive tone which cause me to throw myself in aqward positions everytime I try to move my body. Also I've developed a strain in my neck from the rest of my body having to over conpinsate for my legs being none responsive. But I do have some good news and that is I start my actual medication for NMO on Thrusday. I'm crossing my fingers and hoping that this one will bring some serious resolution to my ongoing issues.

Acceptance

I would be lying if I said its easy for me to write today. Sometimes I'm not sure if I'm getting better or getting worse. Something's have gotten better but then other things have gotten worse. It crazy how we as people get up in the morning hop out of bed. Hop in the shower get dressed, and go to work and think nothing of it. Not even taking the time to realize that having the ability to do these things could one day be taken away from us. I hope to get better, I truly do but whatever happens I have to be winning to accept my reality. Everyone says you'll get better but no one know that for sure not even the doctors. All I truly know is regardless I can't let this defeat me and run my life.

5.20.2013

I woke early this morning and was reading over my comments and I'm just appreciative of everyone who are taking the time to comment or even just read my experiences. For a little more than a year now my life has for the most part flipped upside down. I been through so much not just physically but emotionally throughout this process. But I will save those stories for another day. One thing I can say at the moment is that I'm definitely gaining a story from my life. Sharing it with you all has become empowering at the same time therapeutic for me. Maybe it will have the same effect for someone else too. Excuse me I'm just having one of those deep thought moments.

5.18.2013

It's been a couple days since I posted anything. I would be lying if I said it hasn't been a lot going on. I actually started to get out the house again and to see that there is still life on earth has been great. That seemed short lived because I am back in the hospital. I rather not go into the exact details of what exactly has landed me here. But me and my mother walked into the ER at 7 30am and after running a series of test all day, the doctors decided to admit me at about 9pm. They have put me on another round of steroids to see if that can help. I figure it can't hurt. So it looks like I will be here till Monday or Tuesday. I'm just blessed to have family and friends old and new ones that have continued to be there for me. Where would I be without them.

The Diagnosis

Before I continue I think I need to share some background to my situation. When I was 17 I was diagnosed with MS. Within the past year I have been had a series of relapses that have left me from walking and fully functional to in a wheelchair and having no control of my legs. I also don't have a lot of feeling from my chest down. About 2 months ago I  checked myself in Emory where they placed me in there rehab center. During this time I was told by the doctors that I don't have MS and that I have Neuromyelitis optica. Which is rare disease similar and often confused with MS. This more or less means that all medications that I have been given before have been no help to the relapses I've been having. The good news is the doctor I'm now seeing is great with NMO and says I should regain a lot of my function once on the correct medication. I hope I have the right doctor this time.

Day 1

Physical therapy went well. We did alot of exercises to build back the strengh in my trunk. We also did some exercises to try gain some movement back in my legs. Even though I can't wait to get into Shepard rehab center this is also good for me. 

5.13.2013

Today started off bad but I was able to have energy to get a lot accomplished. I even lifted my left leg to a 30% off the ground. The physical therapist comes tomorrow so hopefully I can get more accomplished.