Taking the long way

Hello friends,

I know it has been a long time, please forgive me. The last few weeks have been very difficult. I tend to withdraw inward during difficult times, so I suppose the last few weeks are no exception. When I started this blog I decided that I wanted it to be a positive reflection of my journey. When I first ventured out looking for other people living with MS I found that more than a small portion of the people I encountered seemed to be held hostage by the disease. Their mournful lamenting about all they have lost was a serious downer, so I wanted this blog to be anything but. However I have come to realize that if this is to be an accurate reflection of my life, it must include the positive and negative.

When I see so much negativity and pain in my work, it makes it a little easier to appreciate the things that I have been blessed with, but stress is subjective. I am sure the things that stress Donald Trump and Bill Gates are far different than the things that keep me up at night, but they are no less intense or important. Of course the preeminent issue for me is my health. There is no way for me to ignore the changes in my daily activities.

I am walking better than ever, but I regularly use my power chair at work. This is often very surprising to the people that I work with. They will see me up and walking and from the look on their faces it is almost as if they have witnessed a miracle. I use the chair to assist with fatigue. I work in two different buildings in a decent sized hospital. If you have ever travelled between buildings in a hospital then you know that the distances can be significant. It takes a great deal of energy for me to walk. It takes a great deal of focus and concentration to put one foot in front of the other. In the beginning it was the vertigo that was the biggest issue. That has gone away, but I still struggle with balance. It is difficult to orient myself in space. It is so hard to explain, but my perceptions of how much to shift my weight from one leg to the other while moving the opposite leg forward is not automatic for me anymore. It is especially hard when I don’t have something to “ground” me. Like a wall to run my hand along as an extra bit of information about where up, down, left and right are located. When I am walking through open space I often find myself sticking my arms out like I am blind or walking in a giant moon bounce. This effort can be exhausting and the more tired I am the more difficult it becomes. I hate to admit it, but I have actually had a fall. Luckily I only had a small scratch on my arm, but it definitely bruised my ego significantly.

I only use the chair while I am at work because I thought I did not need it outside of work. I think I might have been wrong. My world has become so much smaller. I am starting to realize that I often avoid leaving home because I worry about the distances that I might have to walk. Mostly I just go to work and go home. It can be hard to keep your spirits up when there is so much monotony. One day just starts to melt into the next. I try to be more active, but it is such a delicate balancing act. It is almost like every hour of activity requires 2 hours of recovery. Just this Sunday I slept for over 18 hours, basically only waking up for meals. I may have gotten a few things done on Saturday, but absolutely nothing on Sunday. It is hard to decided just how much I am willing to sacrifice.

It is ironic that an article written about my recovery by Mary Free Bed was recently published. (http://www.hoperestoredmfb.com/patient-stories/nickyl/) The article talks about my positive outlook, but lately positive is not the description I would have chosen. Seeing this article and the wonderful comments from my friends was a huge boost. It reminded my why this blog was so important to me. I will try not to let the blahs take over and continue to share this journey. Thank you all for listening. Talk to you again very soon!

Gone, but never forgotten

Hello Friends,

My heart is very heavy today. How do you say goodbye to a friend? How do you learn to let go? Yesterday I lost one of my oldest and closest friends, Oscar J. Perry. From the day we met some 16 years ago we were peas in a pod, the same kind. We always connected and seemed to understand each other (and the decisions we made). Oscar helped me through some really difficult experience as I transitioned into adulthood and learned who I was. He was supportive and even defended me when I was too afraid to do so myself. He always made it clear that we would be friends no matter what and encouraged me to be an individual. He helped me to understand that those who mattered don’t mind and those who mind don’t matter. I don’t know if I would have made through if it weren’t for his support and encouragement. I don’t know if he ever knew how much he meant to me or how much he influenced my life, but I will forever be grateful to him.

I will never forget how he could turn a crappy apartment of basement room into something comfortable and home like. Anybody that knew him in college will remember the black lights and posters that covered the walls. Going off to college is a traumatic experience. I would have never admitted it at the time, but I was scared. I come from a close knit family and had never been so far away from home. On top of that I was going through some major changes in my life. My high school friend and I moved to Allendale with no idea of what to expect.  Oscar was the first person I met when I came to GVSU. He was friendly and welcomed us with open arms. Since I started over the summer term there were very few students (and even fewer who looked like me). Oscar introduced us to people, showed us around and basically taught us the ropes. Most of all he told us about his family by choice, the Imps and Emeralds of Phi Eta Psi. Initially I was skeptical. I was not really the “Greek” sorority/ fraternity type and this was something I had never even heard of. Oscar is responsible for me giving this organization consideration and eventually coming into the land of Green and Gold. No matter where he was, what he was doing or who he was with Oscar always represented for the Phi Eta Psi Family. He was also sincerely supportive in the development of the Gamma Phi Psi organization as well. A true brother in every way.

I could always count on my family by choice and especially Oscar. I remember how we would pool our meager student resources to buy food and provide entertainment, so that no one ever went without necessities or companionship. For a time we were roommates and lived as a family. We laughed and cried and fought, but I wouldn’t trade that experience for anything. It made a Podunk little town surround by cow pastures feel like home to a little kid from the city. Some of the happiest memories of my adult life took place in Allendale and the vast majority of them include Oscar. He was even there when I had my heartbroken for the first time. He gave me a week to sulk and cry and avoid personal hygiene but then enough was enough and he insisted that I get up, get showered and get dressed because we were hitting the club. Thank you so much giving me the kick in the past that I needed.

Over the years our careers and his nomadic lifestyle separated us for periods of time, but we always seemed to come back together. We always picked up as if we had just spoken yesterday instead of six months ago. Our birthdays were one day apart and over the years we frequently celebrated them together. We often referred to each other as Twin for this reason and the incredible similarities in our personalities. A month ago when we last saw each other, we talked about having a big party next year since he would be turning 40 and I would be 35. We talked about our futures and how aging had changed us. Oscar talked about maybe finally settling down and putting down permanent roots somewhere. As much as we were the same we were very different. I knew he would never be able to settle down as well as I know I would never allow myself the freedom to change course at a moment’s notice the way he had. Like true Pisceans we were two sides of the same coin. Two extremes of the same emotions.  Looking back on this last encounter I wish I had said more. I wish I had told him that I loved him and that he would always be my brother. We never realize the significance of these moments until they have passed. I have to believe that if he never knew these things to be true, he knows them now.

I know he is already very busy in Heaven reorganizing things and decorating his room. I am sure he is even recruiting new members to the green and gold family. I love you big brother, I will see you when I get there!

 

R.I.P. Oscar J. Perry

Odysseus 1 Enigma of Wisdom

March 11, 1972 – October 30, 2011

Gone but never forgotten…

Little Monster

**** I thought I hit post last week but it looks like I hit save LOL. So I will post a new update soon!
Hello friends,

I think my empathy might be broken. The emotion necessary to do my job can be a bit draining at times. Thankfully my energy is renewed by my students and their eagerness to learn and help. I tried a new format for my class last night and I am very encouraged. Prior to last night the level of class participation was dismal at best. Initial I thought maybe it was that they had not done the material and therefore could not contribute to the discussion, so I decided to do a pop quiz to find out. I was pleasantly surprised to find that the overwhelming majority aced the test so lack of preparation was not the problem. It seems that they are just really afraid to speak up. They seem to prefer to let me talk the entire time.

One of the assignments for the class is to write a question based on the assigned reading to be turned in at the start of class. So, last night instead of lecturing, I decided to use the question cards. Some I posed to the class as a whole and called on individuals for others. I was so happy to finally have some engagement and exchange of ideas. I did not get to cover everything that I wanted to, but was very pleased with the results over all. This was even more amazing because I returned their first research papers. The scores were a bit lower than either I or the students expected, but the average score was 80%. After quite a bit of internal debate I decided that there was fault on both sides as there were things that I did not explain clearly enough and the students failed to ask questions. I offered an optional extra credit assignment. Those that would like to improve their scores will have an extra assignment and I will have another assignment to grade.

Teaching has been an amazing experience, especially with his group of first year students learning the basic tenants of my profession. It reminds of why I decided on this career in the first place. It helps to reignite the passion for my work. Social workers are nothing if not passionate.  The work we do is often shunned by others. We will never be famous, rich, acknowledged or  even appreciated most of the time, but we do what we do because we just cannot imagine doing anything else. I love my job even when I hate it. I know that many of my clients will never think of our interaction again, but just knowing that I have done all that I can to help that person is enough. When I started out in social work I was once told that if I wanted to be underpaid, overworked and under appreciated then I was in the right place. I never imagined how true that would prove to be, but I still cannot imagine myself doing anything else. Sure I would like to have to the status (and salary) allotted to any other graduate level professional, but all in all I can't complain. How many people have the opportunity to impact another persons life in the way that I can. It is an amazing experience every single time. I will never get tired of that.

Of course I have to tell you about Gizmo. I came home from a long day at work and at school and it turns out he was pissed! Literally and figuratively. I get home tired, but happy to see my puppy. He follows me into the bedroom while I change out of my work clothes and immediately lifts his leg and pees all over my bedspread. As I stripped the bed I thought Oh well, accidents happen. I took him out for a walk and a little one on one time. So then I go into the living room to watch a little TV before bed. Gizmo jumps into Cheryl's lap and immediately pees in her lap. I laughed my ass off, but Cheryl was less than pleased. Then as I laid on the couch watching TV I realized that Gizmo had been quite for a long time. I looked down on the floor and see that he had been very busy chewing through my cell phone charger. That was the last straw, somebody went to bed earlier before I became an abusive parent. He might be a little monster, but he is my little monster!

Well, thanks for listening. Talk to you again soon!

Some much to do, so little time

Hello friends,

I have really missed talking to you. Since we last spoke, both of the new medications were approved. I have already started the Ampyra to help improve my ability to walk independently. So far, so good. I don't know if it is the medication, but I am finally able to walk without any devices! It is incredibly tiring, but it feels amazing to be able to walk on my own. I have been having a lot of pain and muscle cramps as my legs get used to walking again, but I finally feel normal again. I my have once again pushed things a little too far this weekend though.

I have scheduled to begin the Gilenya on October 31st. Now that it is close to becoming a reality, I have to say that I am a little worried. I know that the risk of cardiac complications is very low, but my luck has not been the best lately. My family has a long history of cardiac issues. Both my grandparents died from heart disease. I hate to take chances with my heart under the circumstances. So if you remember please say a little prayer for me.

My class has been going very well. Last week my students turned in their first paper. Reading and grading papers is far more difficult than I ever expected. I wish I had time to talk more, but there is so much for me to do I will have to chat with you later. Thanks for listening. Talk to you soon!

Wow

After finishing my last post I logged into my Facebook page. There is a new feature that shows you what you post on today's date one year ago. I was shocked by what I had to say months before this whole ordeal began. The post that I made really puts all the ups and downs of the last year in prospective for me. This is what I said on 9/14/2010: Regardless of the challenges that come my way, I am content and taking in all that life is offering me. I really hope I can live up to my own expectations. 

I just had to share this with you. In a way I kind of miss the old site. The guestbook was always full of words of encouragement that I could always turn to when I have rough day. Even though there aren't any comments on this page I know that there are a lot of people pulling for me and this post reminded me that I can also rely on something deep down inside that has be preparing me for this challenge all along. Till next time ;-)

Everything Must Change

Hello Friends,
Life seems be moving at a thousand miles an hour. I fully intented to talk with you yesterday, but exhaustion got the best of me last night. Last week was my 3 month follow up appointment with the neurologist. St. Mary's hospital is so incredible. I love my doctor. He has never made me feel rushed and always takes the time to explain things to me fully. He thinks that I am doing well and currently in remission. We started talking about my medication. I try not to complain (except to Cheryl), but I just can't take the injections anymore. If someone didn't know any better they might see the numerous bruises in various stages of healing as signs of domestic violence. I have been on the medication long enough for there to be multiple red, sore, itchy, bruises at every injection site. I just cannot see myself doing this for the rest of my life. When it's time for my shot I have to choose placement based on the least inflammed skin. We decided to try the new oral medication. We spent a lot of time discussing the pros and cons of this decisions. This is a very new medication. It has only been on the market for about a year. So far, there haven't been any major concerns, at least none that the drug company has been forced to disclose.


Like all medications there are definitely risks associated with the Gilenya. Some of them are pretty scary. I had to have blood work, an EKG and an eye exam just to make sure I am healthy enough to take this medication. This drug can cause heart rate issues so severe that the FDA requires the first does to be given in the physician's office and I have to be on a heart monitor for at least 6 hours. It can causes macular swelling that could cause vision problems. It can raise blood pressure and will make me more prone to infection. Oh yeah and it might impair my liver function. Sounds like fun, huh?!
I know it sounds crazy and like a huge risk, but I did not come to this decision lightly. I have to think about a medication that I can seriously expect to be able to take in the long term. People that take insulin always say you get used to it and the injections become easy. Well the injections aren't the problem. I am so over the needle and the actual act of injecting myself. It is a day or later. The doctor explained that my body picks up on the alien substance in my body and mounts a serious response. This makes a lot os sense seeing that this over-active immune system my be the source of the whole problem in the first place. I had hope that this allergic response would wane over time, but Dr Sullivan said this was doubtful. Having my arms, legs, stomach and back covered in hives is too much to handle. So, this is why I have made my decision to take my chances with the new medication.


There is also a medication that we are going to be adding. I will be trying Ampyra which is mediction designed specifically for the ambulation issues with MS. It also has a fun bunch of side effects, but these are less life threatening than the Gilenya. This one will just give me a urinary tract infection. I hope that this will allow me to dump the cane. My dog has becoming increasingly frustrated with the slow pace of our morning walks! I have to laugh about it because crying just isn't an option.


Speaking of Gizmo, since our move he has started the grueling process of training me. I moved to a place that has a dog run and more freedom for him. Well, Gizmo immediately decided to take advantage of this. A while back I told you I was training him to use puppy pads. Well, I suppose seeing other dogs do their business outside shamed him in some way because he has refused to use the puppy pad since we moved. To prove his intentions he even tore it out of the frame and ripped it to shreds.  Sooooooo, Gizmo has been working very hard to get me properly trained LOL. The upside is no more "accidents" in the house. I wonder was he doing it on purpose all along in protest to the indignity of being asked to use a puppy pad!


I also made it through my first real lecture. It turns out 3 hours was barely enough time to cover everything I wanted to talk about. No one fell asleep and I even got a couple of laughs, so I guess I will call it a success. It is so strange being on this side of the lectern. There is a lot of time and work that goes into preparing a lecture. I really feel bad about the fact that I rarely completed the reading assignments when I was a student. But I will be doing my damnedest to make sure that my students do!


Thank you again for listening. Talk to you again soon!

Deer in the Headlights

Hello friends,

I made it through my first class without puking or passing out! I was nothing but nerves all day long. I couldn't even eat. I eventually had to force myself to eat a salad just to make sure I didn't get a hunger headache. When I finally arrived to class and settled in I realized that these were kids. I mean they are graduate students, but the vast majority of my students are about 21 or 22. Somehow I expected them to be older. They just stared at me, seeming halfway afraid to raise their hand or speak. It was hilarious watching them look around the room and tentatively raise their hand to say something. They just seemed so scared. I wonder if I was ever that tentative. It was then that I realized that they were looking to me for direction. They were just sitting there primed and ready to take in what ever I gave them. Some furiously took notes on everything I said, even though I was just going over the syllabus. It finally sunk in that I really do know more than they do. That I really do have knowledge to share with them. I have no idea how I am going to fill three hours a week, but I think I just might be able to do this. I just pray that my body holds out, I can't wait to share some of my experience and knowledge with these students.

I went back and forth about what I wanted to say about my cane or if I wanted to say anything at all. All of the other instructors I talked to about being a successful teacher said that the key was to be myself and insert my personality into what I am doing. I finally decided that my experiences with disability and chronic illness are a part of my identity and need to be included. I think my perspective as a person with disabilities will be valuable to the course because it is an area that is often overlooked, even in a field as inclusive as social work.  So, I decided to explain that I have a condition that affects my ability to walk and requires that I use various assistive devices like the cane or a wheelchair. I may get into more specifics later on, but decided I will just play it by ear and see how things go.

On another note, work is going incredibly well. I use the power chair quite a bit so people aren't used to seeing me walk. Since I went back to my full assignment and schedule fatigue has been an issue. Not in the sense that I am to tired to do the work, but my symptoms become much more pronounced when I am tired. I don't feel like I need to take a nap or anything, but my body shows the strain. The tremors, foot drop and my coordination all suffer. When I took a break from the chair this afternoon and did some walking, I think a few of the nurses thought I was going to fall down. It's slow and looks funny, but usually I can get it done. I am so thankful to work with amazing people who appreciate the work that I do and care about me as a person. I think teaching will be a lot of fun, but the hospital is my first love. Not just because of the work that I do, but because of the people I get to do that work with.

Well it's getting late and I have to work in the morning so I better get some rest. Thanks for listening. Talk you again soon.

A New Role

Hello friends,

I had to stop and talk to you for a moment. I survived my move this weekend. I forgot just how much I hate moving. I was able to hire movers which made it faster and a lot less tiring, but I still hate it! Living out of boxes is nerve-racking and has added at least 20 minutes to my morning LOL. The craziest part is the fact the one of the main reasons I moved is my puppy. The place I used to live at technically didn’t allow pets, so I was constantly hiding him. Now he is free to go outside and there is even a dog park. He is still afraid of other dogs, but seems to getting used to other dogs being around. He is so cute when he goes out on the deck to people watch. I can tell that he is happier and that makes me happy.

 I am just a bundle of nerves tonight. Tomorrow is my first class. I hope I can go to sleep tonight. I have so many ideas and almost as many fears. I learned and grew so much while I was in college. Certain professors stand out in my mind because of their ability to capture my attention. Their ability to make me want to think more critically and understand an issue, not just regurgitate facts. I want to be that kind of teacher. This is a daunting task, especially over the course of a semester. I have spent a lot of time trying to figure out what made these particular instructors so special. The funny this is the one thing they all seem to have in common is their uniqueness and individuality. I think the key to making this a successful endeavor is to just try to be myself and inject my personality and experience into the class. I think if I can really express my love for what I do the students will become engaged in what I am presenting.

I am so privileged to do something I love.  I have an amazing job that is so incredibly well suited to my personality. People always say to me, “I don’t know how you do what you do”. Being a social worker feels as natural to me as breathing. It’s just what I do. I am so excited to share this with my students. Wow, that sounds strange “my students”. Somewhere along the line, I guess I grew up. I wonder when it happened. I wonder when I became a person that other people would be interested in listening to. I know I sometimes don’t give myself credit for my accomplishments, but I really hope that I am able to meet this challenge.

I better get some rest so I am fresh for class tomorrow. Thanks for listening. Talk to you soon J

Need for Speed

Hello friends,

I am happy to report that I made it through my first 40 hour week without complications. It was a little sad; I must admit I have come to enjoy my 3 day weekends, but I am very proud that I was able to achieve this goal. I even resumed my full assignment. So far, I feel that I have been able to attend to my responsibilities just as I did before. When the therapist first suggested the power chair, I was a little hesitant, maybe even a little self-conscious. Now that it has arrived; I don’t know how I managed without it. It is no longer a struggle to get through my day. On top of that, it is a lot of fun. Imagine if someone gave you a go cart to zip around in at your job. I am having a great time. This chair is amazing. I thought is would be big, slow and cumbersome. That couldn’t be farther from the truth, it is compact, fast and turns on a dime! Can you tell how much I am enjoying myself?! But, seriously, more than the fun of driving it around, the chair allows me to have enough energy left at the end of the day to have a personal life. Since I have been back to work, particularly hectic days have left me almost completely drained. Many evenings I go home and go straight to sleep. Cheryl had to wake me up to eat dinner. Now I have the freedom to fill my life with more than work, therapy and sleep.

This couldn’t have come at a better time because one of those opportunities I mentioned a few weeks back has come to fruition. I have accepted a second job. Now before you tell me to slow down and take it easy, this was an opportunity I have been working towards for over a year and just couldn’t pass it up. After careful evaluation of my situation, I accepted a position as an Adjunct Professor in the School of Social Work at my alma mater Grand Valley State University. I cannot begin to express to you how excited I am about this opportunity. Classes begin next week and I am working hard to prepare.  There is a lot more responsibility on this side of the desk than I ever considered. I am partially responsible for helping these students to become competent social worker who will one day be my colleagues. I hope I can do my small part to help them get there.

I hate to be so brief because there is so much more I want to tell you about, but the new semester is quickly approaching and I have work to do! I cannot wait to tell you about this newest chapter in my life and experience! Thanks for listening. Talk to you soon!

Being My Own

Hello friends,

Life continues to move forward at a lightening pace. I am doing my best to hold on and enjoy the ride. I met with my rehab physician who cleared me to return to a full time work schedule as soon as my power chair arrives. When I explained the time frame given to me by the medical equipment company, the doctor agreed that this was unacceptable and asked for the name and number of the person I was working with. A few hours after my appointment I received a call asking to schedule delivery of my power chair. Amazing how the right letters behind your name can make things happen!

My world has expanded 10-fold since I started driving again. I am out in the world on my own, no chaperone. I hadn’t realized it, but since I became ill I have not been ANYWHERE by myself. Just like everything else there are two sides to this privilege. Last week I decided to stop at a corner store on the way home. I had a very surprising reaction to the experience. I felt vulnerable. I don’t consider myself to be aggressive or confrontational, but I can take care of myself. Martial arts experience and a recent weight lifting regimen had made me pretty confident in my ability to protect myself if need be. Standing there in this shabby little party store I became painfully aware that if anything were to happen, there is nothing I could do about it. Neither fight nor flight is an option for me. I became terrifyingly aware of the vulnerability of physical disability. So many people have lived with this their entire lives, but it was completely new to me. As I drove home I thought about this for a long while. I thought about how easy it could be to withdraw from the world in an effort to stay safe. But, I realized that life isn’t safe for anyone. It isn’t supposed to be. That is what makes life interesting and worth living in the first place. I might be a little more cautious and aware of my surroundings, but I will continue to live. So if you see me looking around, don’t pay it any attention, I am just checking things out!

On a lighter note, I had a lot of fun too! After a long day of errands, including Gizmo’s first trim, I was able to go out to my friend Adrianna’s for a little decompressing. We went out on the pontoon boat to enjoy the sunset. It was amazingly relaxing and I have never seen the moon look so full. Once again I am reminded of the invaluable role that my amazing friends and family play in my life. I appreciate them more than ever. We finished the night with my absolute favorite, S’mores! Thank you Adrianna for making my day! I was also able to spend a day with some of my sorority sisters. I am so proud of how much we have grown and matured. I see major things on the horizon. Phi Psi day I die!

Today my power chair arrived. In just one day it has made a huge difference in my life. I was able to get through my date with only a fraction of the fatigue. With a little bit of support there is nothing I cannot accomplish. I can’t wait to see how the rest of my life is improved by this. For the first time I didn’t feel like I needed a nap when I came home from work. I can only imagine how much fuller my life will be because of this.

There is so much else to tell you about, but I guess I will save a little bit for later. Thank you for following me to the new site. You are helping me in more ways than you can imagine. Thank you for listening. Talk to you again soon!

P.S. Please comment and let me know what you think of the new site!

On The Road Again

Hello friends,

I didn’t realize how much time has passed since we last spoke. I have been so busy. I have moved all of my previous entries to the new site, so please don’t forget to go to www.othersideoftherails.blogspot.com if you would like to continue following my blog. 

On another note, last Friday I drove myself to work for the first time in what seems like an eternity. I cannot tell you how wonderful that was for me. Of all of the things that I lost during this experience, the loss of my driving privileges and the accompanying freedom was the worst. Even more so than losing my physical mobility. I know that probably sounds odd, but what can I say? I am from Detroit, the Motor City, driving is my birthright! I am humbled by the kindness of my friends for helping to make sure I was able to do everything I needed to do. Thank you Carole, T.J. and Kristy, I really appreciate your help. With a special thank you to Cheryl who had to endure my complaints about her driving, when most of the time I think I was just mad that I wasn’t driving. She just might be the only person who is just as happy that I am driving as I am!

 Each step back into my life compels me to reflect on living through the experience of suddenly becoming disabled and the journey back to independence. Reflecting on all the things that I have taken for granted and all the things I ignored altogether. Of course being a therapist I had to analyze it LOL. In my training and professional experience I have often discussed grief and loss, but it is really something you have to experience to fully understand. It is an incredibly visceral experience. No amount of education or training can ever really prepare you for something like this. I have experienced loss and death in my life, but somehow these events were external. This experience has been absolutely internal and personal. I think being able to write this journal has been essential in keeping me from getting lost in my own head.

I thought about the famous stages of grief. I definitely had a period of denial. During the first few days in the hospital I scoured the internet trying to complete my own differential diagnosis. I heard what the doctors were saying, but I knew this couldn’t be happening to me. I have watched enough episodes of House to know that you have to go through a few guesses before the great epiphany comes along! In a way this helped me more than any of the information the doctors were giving me. Or the reassurances from well meaning loved ones that it might be something else. As I reviewed every conceivable condition for my symptoms it became more and more obvious that nothing else fit my list of symptoms.

Then there was a thankfully brief moment of depression. My cousin’s father died of MS a number of years ago and when I finally accepted the diagnosis, he was my first thought. It came over me that I had witnessed my own future as a child watching the progression of this disease. Over the years I watched him slowly lose the ability to walk and became confined to larger and more automated wheelchairs. He lost the ability to uses his hands and unable to use the wheelchair. He was eventually confined to a hospital bed with his entire world reduced to a single room. I thought about the last time I recalled seeing him before he died. He was lying in bed, impossibly thin and frail for a grown man, with a gaunt face and constricted limbs. His face drew into a strange grin. To my ears his speech was indecipherable, but his eyes were alive and showed so clearly his desire to communicate, to engage. I remember that even in that moment in his feeble condition his eyes still contained happiness. I don’t know why, but this memory has stuck with me over the years since his passing. I am sure the details have been corrupted by time and my own perceptions, but there it stayed in the back of my mind. Since his passing, I have rarely entered the room where he spent his last days. I don’t even think that my aunt knows it, but something about that room has made me uncomfortable since he passed away.  I like to think this is some empathetic response to another human beings suffering, but I wonder if it was something more.

When it finally sank in that the disease that had claimed this man’s life was now a part of my life, I lost it. I fell apart and cried in a way that I never had before, and pray that I never have to endure again. It was painful and gut-wrenching. It felt like pain and sorrow rushing up from the deepest recesses of my heart and soul. I remember just shaking and crying out, “I don’t want to die like that”. I was so upset the nurse ended up giving me a sedative. When I woke up it was all gone. The self-pity, the anger, the sorrow, the frustration; they were all gone. It was like they drained from my body with the tears that had flowed so freely the night before. When I woke I just knew that it would be different for me. It may be more denial, but I know I will get better. I know that I will find a way to live with this disease and not just live through it. I haven’t cried for myself since that night and I don’t plan to.

This isn’t to say that I don’t have my moments. There are definitely times when I become frustrated with the things that are still difficult for me. Times when I feel ashamed of my strange way my body moves when I walk and the random tremors that cause people to stare at me. What I am saying is that I try to make those moments as brief as possible. I still have an amazing and wonderful life surrounded by people who love me walking or wheelchair. No matter what happens in the future, my eyes will be filled with happiness. I wish the same for you.

Thanks for listening. Talk to you again soon.

Anger Management

Hello friends,

I am so happy to be making progress every day. I went for my driver’s evaluation and passed! The instructor will be amending her report and recommending that I return to independent driving. Hopefully in the next week or so I will get the final okay from my doctor.

The medical equipment company finally called and said they have received the insurance approval. I was very excited until I asked when I could expect delivery. The woman tells me they will receive delivery from the manufacturer in 3-5 weeks. I nearly lost it! I told her that unless they were building this chair custom  to my specifications with 20 inch rims and a 8 speaker Bose stereo system, there is no way it should take that long. They promised to look into it and give me a call back. She better because I am working really hard to control my temper, I would hate to have her ruin it!!!

I was also able to go tubing as planned this weekend. I had a great time and I can’t wait to do it again. I look forward to this trip every year. Eventually I will have all of the things that I want for the trip LOL. I make a list each year of the things I want to have for the next trip, but without fail only remember the beer! Next year I swear it will be different. I will plan ahead and have everything ready! Actually if I can find away, I will go again before the summer ends. There is nothing more enjoyable or relaxing as lying in a tube eating, drinking and chatting with family and friends. These little moments make the rest of this worth it.

I value time doing the things that I enjoy with the people that I care about. I spent too much time focused on the wrong things. I never realized how out of whack my life really was. I thought about work constantly. More than just thought about it, I often worried about it. Worried had I taken care of everything. Worried if I should have done more. Worried if anyone thought I wasn’t fully competent in my role. My life revolved around going to work and going to the gym. Looking back it is easy to see how limited my perspective had become. I think I still give my work the 110% that I always have, but I leave that at the door. When I am at work that is my focus, but when I am at home that is my focus. It feels so much better this way. I know that I do my best every day and that is all that I can do. As long as I do the best that I can, I am content.

So here’s to contentment, love, friendship and peace. Thanks for listening. Talk to again soon.

Saturday July 23, 2011

Hello friends,

This week has been full of surprises, both good and bad. So many thoughts are running through my mind. This might be a long one so please bear with me.

My frustration with my driving situation pushed me to call driver’s rehab and explain my concerns. I just cannot picture myself using hand controls for my vehicle. Anyone who has seen me over last few months can attest to the improvements I have made in my ambulation and endurance. Am I back to 100%, not yet, but I am getting pretty damn close! I felt that my reaction times were even more delayed by using the hand controls.  I also hope to be able to get a new car next year, so it wouldn’t make sense to make expensive modifications to my current vehicle.  I don’t want to wait until next year to start driving again. I may require assistive devices in the future, but that time is not now. I suppose I made good case because the driving trainer has agreed to another road test using the foot pedals next week.  I hope this will settle the issue and move me closer to independent driving.

On another note, I am really getting back into the swing of things at work. In my smaller coverage area, I think I am able to provide the level of service that I expect of myself. At the same time, I realize the burden that my presence places on the rest of my team. My assignment is smaller, but that does not change the number of units that need to be served. Someone has to cover the areas that I am not able to. When I am there, my teammates have to cover the portions that I cannot. I worry about the burden that this places on my team and the diminished level of service all of the other units suffer because the team is spread so thin. I am continually impressed by my team and their ability to accomplish so much with so little. I worry about them as well. I know all too well the effects of pushing yourself too hard for too long. I worry about how long things can continue this way.

 Our coverage staff have commented to me how difficult it is for one person to cover the units that I did. I don’t know if it will be realistic for me to take it on again, but I must be a glutton for punishment. Since I am using the cane pretty exclusively, I decided it was time to try the walk to the other unit I was covering. It is a rather long walk. Probably the longest distance I have covered since this all began. I have to admit it was extremely difficult and I am not looking forward to doing it again. I actually broke a sweat getting there. It seemed to take forever to get there and I had to rest for about a half an hour before I could even consider trying the trip back. I am still patiently waiting for my power chair to be approved and delivered, but last Friday the DME company told me it could take 3-6 weeks. I won’t even get into how I feel about that. But anyway, the next day the pain in my back and legs was far greater than I expected. I really wanted to stay in bed Thursday, but I managed to push through and go to work. I was very pleased with myself for getting through the day. I was even happier for the nap I took as soon as I got home!

MS has changed the way that I walk. It has changed the way that I use my muscles. It has caused my body to move in strange and unusual ways that it is very unhappy with. The more I move, the more muscle pain I have. The doctor has given me muscle relaxers, but I cannot take them while I work. On tough days, I have had to go back to my office to try to stretch and rest until the spasms pass.  The great thing is a good portion of my job can be done over the phone, so no one has to know. Today when I woke up the pain in my back was so bad I couldn’t get out of bed. I had to take a muscle relaxer and wait for it to start working so that I could get in the shower. But an amazing thing happened. As the pain diminished I was able to control my body much more easily and walk without the aid of the cane. It was so exciting. My legs are getting stronger and when I am not in pain I am able to walk quite well. It was so exciting, but at the same time very scary. I have to wonder if the only way I will be able to walk independently is with the use of medication. The idea of that reality is the furthest thing from independence that I can imagine. I guess I will have to wait and see.

The realities of coping with a chronic medical condition are starting to set in. I am very grateful to be an insured American. I don’t know how I would have managed without it. My health insurance has covered the VAST majority of my medical expenses. While only a relatively small percentage of my medical expenses are my personal responsibility, it still amounts to thousands of dollars. I am in most case only responsible for 20% of charges, but a single bill for my inpatient admission was a little over $18,000. Contrary to popular belief, social work is not an extremely lucrative profession LOL. Thankfully, I have been able to cover the costs so far, but the bills continue to poor in. I really have to work at this point. There is no other choice if I want to continue to take my medication and have the necessary therapies. The co-pay for my MS medication alone is $70. I can’t imagine how I could afford it without insurance.

Speaking of my medication, I AM SO SICK OF NEEDLES!!! The side effect that I was most afraid of, the flu-like symptoms, have not been so bad. I am really frustrated by the injection site skin reactions and pain. Each spot that I inject develops an itchy red rash and a hard sore lump under the skin. This lasts for well over a week. So at any one time 5 or 6 of my 8 injection sites are itchy and painful. A couple of aspirin usually take care of the flu-like aches, but nothing really helps these skin symptoms. The reactions on my arms are so bad my MS nurse has advised me to take my arms out of the rotation for awhile, leaving only 6 injection sites. I got really down earlier this week when I considered the fact that this is what the rest of my life might be like. I pray that the amazing research into the treatment and management of this disease continues. So much has improved in the last 20 years; I hope that in the next 20 years there will be other options available to me. But for now, just like tonight, knowing full well how awful it will be I will force myself to give myself the injection and be thankful knowing it will help me live a fuller more productive life.

New opportunities continue to present themselves to me and in spite of all the obstacles I face each day, I feel incredibly blessed. I don’t want to jinx anything, but I hope to have some really great news to tell you in the next few weeks. So please keep your fingers crossed and if you can see fit, say a little prayer for me.

By the way, I am hard at work on the permanent blog site Other Side of the Rails. I chose this title because my life will forever be changed as person, a professional and a care giver because of my experience on the other side of the bed rails. The transition from care giver to patient will influence the rest of my life. I am working on a way allow this blog to generate income so (a bit selfishly LOL) I hope you decided to continue to follow me there and share it with others!

Sorry to go on for so long. Next time I will tell you about Gizmo’s first shots. I don’t know who was more upset by them, him or me LOL! Anyway, thanks for listening. Talk to again soon!

Monday July 18, 2011

Hello friends,

 Today was another amazing day, but I am coping with a little bit of frustration. I have improved immensely over the last few months. Even though I have felt like I was able to drive, I haven’t done so. I have instead waited through the formal evaluation process. I am frustrated because this process has been far longer than I anticipated and I feel as if I am not being told what the expectations are.

When this started I thought I would go through the driving simulation and if I passed that,

 I would be done and free to return to driving. I was told that if necessary I would then be scheduled for a road eval. Turns out that my interpretation wasn’t quite correct. What they meant was if I did not pass the simulations, I would not be eligible for a road eval. Worse yet there were more surprises/miscommunications to come.

After waiting two weeks, I had my road eval today. I felt pretty confident about this eval because I received the written report from my clinical evaluation. I passed the vast majority of the eval. I was well within normal limits for things like visual acuity, field of vision, night vision, depth perception and 11 other testing areas. On one test that measured my reaction time to visual and auditory cues, I had an issue with a poor choice of footwear and a little bit of anxiety. Basically my shoe got caught moving from the gas to the brake. My reaction was timed at 85/100 of a second. It appears that the safety standard is 75/100 of a second. In all of the other trials my reactions were well under the standard, so I didn’t think this was a problem. The report stated that I was appropriate for on-the-road eval to “further assess ability to return to independent driving”. Almost as a side note the report indicated that my need for adaptive equipment such as hand controls should be further assessed in-car.

Well I arrived for my evaluation today and was told that I had to use the hand controls due to lower extremity deficits. I was shocked to say the least. I have moved from crutches to a cane since the clinical eval, so in my mind my lower extremities are stronger than ever. I did not protest, thinking that once I got through this I would be finished with this process so it was just a minor inconvenience. So as we drove I was able to get the hang of using the hand controls, but I felt far more unsafe and afraid using this method. My mind and muscle memory have been trained to signal my foot to use the gas and break. My mind was struggling to instead use my hand in an unfamiliar pattern to control the momentum of the vehicle. I won’t even go into how foreign that little spinny knob thingy is.

It felt like being in Drivers Ed all over again. The instructor even had a brake on her side, just in case. During the ride the instructor explained that today was to determine just how much on-the-road training I would require as she happily informed me that I was adapting well so she would only be recommending the minimum 6 hours of training before my secretary of state evaluation. WTF?!?!  Six hours? Secretary of State? My face nearly fell off. No one had ever mentioned any of this. Granted I never asked, but I had no idea that this would be such an involved, long-term process. It turns out that after 3 two hour in-car training sessions, I will become eligible for a road test with the Secretary of State. If they agree that I am comfortable with the hand controls they will give me permission to use said equipment. Apparently there are huge fines associated with using this stuff without permission from the state. THEN the conversion company will be able to install the required devices in my vehicle. Who knows how long it will take get all of this scheduled and completed, especially now that I am working 4 days a week.

I left feeling quite frustrated and a little angry that I had not been provided with good information about what would be required of me. I am not sure what if anything can be done about this. I feel somewhat powerless in this situation. I just cannot imagine myself comfortably using the hand controls. I haven’t been nervous behind the wheel since my one and only driving lesson with my mother that ended in less than 5 with a near miss of the tree in our front yard. This is not a good feeling.

That along with the seriously hectic day of psychiatric placements at work and a PT session completely wore me out today. I think I was asleep a half an hour after I got home today. I didn’t even play with my puppy. Now it is time to go to bed so I can work tomorrow and I am wide awake. I am trying to stay positive, but it is a bit of a struggle today. Some days are definitely harder than others. I am working hard every day and trying to focus on the victories instead of the challenges. The number of obstacles along the way sometimes amazes me. It makes me mad, but I will successfully complete this task as well. Time to suck it up and Git-R- Done!

On that note, thanks for listening. Talk to you soon.

Tuesday July 12, 2011

Hello friends,

Every day is a little bit closer. A little bit closer to my goal. Every new thing that I am able do is so amazing. I don’t think you can really appreciate YOUR life until you face having it taken away. I think all too often we focus on having some other life. Some other house, some other car, some other job, some other everything. I think that longing for something else is why “reality” TV is so popular. It captivates so many, even when it is so far removed from the reality that most of us live in day after day. I mean seriously how many of you could ever race around the world like “The Amazing Race”? Or spend 40 days on a deserted island or some remote tropical paradise like “Survivor”? Or even in college, how many of you lived with 7 total strangers like “The Real World”? Hmmm, okay well maybe I did, but that is a story for a different day! I guess what I am trying to say is that I am happy just surviving the amazing race that is my real world. It’s fun to lose yourself in a world of make believe, but don’t get caught up in the hype. Real life is so full of joy if you just take moment to stop and really appreciate it!

This weekend I went out to a small swimming hole to take a break from the heat. I must admit, I was a little nervous. As walking has been a bit of a challenge recently, I could only speculate about my ability to coordinate my body for something as complex as swimming. On dry land being uncoordinated might result in a fall. While painful, this would more than likely be survivable. Being uncoordinated in the water could have far more dire consequences. So just to be safe I decided to rent the inner tube and even considered the water wings, but my pride/vanity wouldn't let me go that far!

I am using the cane most of the time now, so it seemed like it was time to give this challenge a go. So into the water I went. Tentatively at first as I adjust to the sand moving under my feet, I took a few steps into the water. Marveling at how for the first time since this all began, the ground really was moving beneath me, LOL. When I was finally out far enough to use the inner tube to support my weight and felt the pull of gravity slip away, I felt the biggest grin spread over my face. You know the kind of smile that is so contagious that your whole face wants to join in on the fun. I was no longer fighting the battle between what my body was telling me and what my mind knew to be true. The water and my natural buoyancy kept up, down, left and right in their proper alignment. I finally relaxed completely for the first time in months!

I suppose I have always had an affinity for the water. As I serenely, floated in the water letting my mind wander, I thought back to a picture in one of my family photo albums of my mother and me in an infant swim class. I realized that I have actually been swimming longer than I have been walking, so it only makes sense that this would feel so natural to me.  Some of my best childhood memories revolve around family trips to BaldMountainState Park and the pool at AvondaleHigh School (where much to the amazement of the older kids) I would jump from the highest diving board without fear. In the water, I felt normal for the first time in months. I spent a lot of time at the spot where the water was just over my shoulders with my feet firmly planted on the squishy bottom just walking back and forth, enjoying the feeling of walking relaxed and upright. I hardly wanted it to end. I almost pouted when it was time to leave LOL.

Moments like these are what I look forward to. That and of course my puppy Gizmo. He is really developing some personality. He is alert, energetic and more than a little mischievous. He is so funny when I tell him no. He looks so offended that I would dare interrupt his fun. He will stop, but as soon as he thinks I am not looking he goes right back to what he was doing. The problem is, he is so cute I can’t stay mad for long. I will be very happy when this teething phase ends though. He wants to chew on everything including me! House-training has also been an adventure. He is close to mastering peeing on the pad, usually getting at least within a few inches of the designated place. Number 2 on the other hand has been far more difficult. He just can’t seem to grasp the concept that pee and poo belong in the same place! Luckily, I am starting to learn his patterns and can pretty accurately predict when he is ready to drop off a package with just enough time to rush him over to the potty pad. Once more I have to wonder if I am training the puppy or if the puppy is training me!

Well I have to get ready for work in the morning and head for bed. Thanks for listening. Talk to you soon.

Friday July 8, 2011

Hello friends,

Another eventful week has passed. Last Friday I saw the rehab physician who has cleared me to work four days a week. As you already know I also picked up my puppy on Saturday, so I was happy to have a long weekend to spend with him. I had a great 4th of July, with great friends. I hope you did as well! I was really surprised by my puppy though. After the cookout, I decided not to go to the fireworks because I thought the noise might upset him. Imagine my surprise when he went to his bed and slept through it all! I suppose I shouldn’t underestimate him.

 This week I ended up working Tuesday, Wednesday and Thursday because of the holiday. It is the first time I have worked three days in a row since April. I am feeling stronger and stronger, but by the end of the day I am usually pretty tired. I have to keep pushing and working hard to walk. Every day my shoulders feel more abused. This just isn’t a long term solution for me. I do not believe that my recovery has plateaued. I WILL continue to make improvements and gains. I have been working very hard on the mental and physical training that I need in order to walk. I cannot say what the future holds, but I can say that wheelchair/crutches are not permanent. It may be one day and I can accept that, but I just believe in my heart that that day is not today.

It is still very hard for people to understand what is going on with me. So many times I have been asked,”If your legs work, why can’t you walk?” While I am no longer dizzy or nauseous, my ability to balance and coordinate the orderly movement of my legs is still quite impaired. When I stand without support, it takes immense concentration to remain upright. If I close my eyes or become distracted, it all falls apart. Without the visual cues and constant internal reminders to ignore the feeling that the floor is tipping to one side or the other underneath me, it is a major struggle.

There has been so much improvement since this all began, but it is still a little frustrating. I mean I trip over my own feet like a toddler. The best way I can describe it is that feeling you sometimes have when you have been out on a boat in rough water, then return to land. It’s the sensation that the ground is moving beneath you, swaying from side to side. You know it isn’t possible but you feel it all the same. The problem for me is that it never completely goes away. Some days are better than others and I am learning to get used to it.

With that being said, all my work is starting to pay off. Today in therapy I have finally made the move to using a cane. I am significantly slower than I was on the crutches or even the wheelchair, but I don’t care. Being on the cane puts me one step closer to walking independently. My therapist tells me every week that I have to slow down and take things easier, but it just isn’t in me. Today they wanted me to walk for five minutes then rest for three. Can you imagine how long it would take me to do anything?! Maybe it’s the ADD, but that is just outrageous! We finally agreed to 15 and 5 instead. The therapist says I am driven, but as if that were a bad thing. It’s just who I am. This disease may have changed my life in many, many ways, but it can’t change my character or who I am as a person. I will continue to push, but I will try to push a little more slowly.

Bit by bit, day by day I am getting my life back. I appreciate every challenge and celebrate every achievement. It may sound strange, but in a lot of ways I am thankful that this has happened to me. I am so much happier and more satisfied with my life. I have so much clarity and take joy in each day. I just wish everyone could see that and understand that there is no need to be sad or feel pity. I am so much better than I was before. This disease may have weakened me physically, but mentally and emotionally I am stronger than ever. I finally understand that while I am responsible for my life and my actions, no amount of determination or defiance can change my path. Where I am is exactly where I am supposed to be. I am learning to enjoy the journey instead of constantly trying to commandeer the wheel. I know that I am in good hands ;-)

Thanks for listening. Talk to you later.