10/20/2015
After my transplant I was on a high. I was high for life, for living life and enjoying every moment it had to offer, but in that process, I lost something very dear to me. I lost Chris. We had been together for 15 years and 9 months and I thought things were fine. Sure, I could see that some things were different, we were growing apart some, the sex life was becoming non existent, we didn't talk as much, we were starting to live separate lives, but I thought we were indestructible. That what I get for thinking we were secure in our relationship. Going through recovery from something like chemo and a stem cell transplant transforms someone, you become more passionate about the life you have been given a second chance on. When I was sick, I was in a deep state of depression. I did not want to be here in this earth, I prayed for death. I am very independent and do not like having someone take care of me physically. I had shut out a lot of my friends because I never had the energy to get out and do stuff, the friends I distanced myself from just didn't seem to understand what I was going through. That was partly my fault because I always had a poker face on and never really wanted to talk about the negative things afterall, positive thoughts equal positive results, right? Well, not always, but those friends also brought negativity to my life which I could not deal with at the time. Remarks about my weight, about me not coming to hang out with them, I just need to get up and exercise etc. They did not understand that exercise caused even more weakness and fatigue. I changed my diet to a raw food vegan diet and that helped tremendously because it gave me more energy, but in the process I lost weight, a LOT of weight and I got reprimanded for that because supposedly I needed to be healthy and at a healthy weight to prepare myself for chemo. What they didn't understand is that I was at my healthiest at that moment because I was eating whole foods packed full of nutrients. Over time, I got over all of the comments, but I haven't forgotten them. When I went for my transplant I was lonely during the times I was in the hospital alone and there were moments I asked myself what the hell I thought I was doing. Did I make the right decision? Chemo really does take a toll on your body, all the chemo, steroids and other drugs they give you in the hospital just puts your mind in a different place and I was still depressed. Once I was released from the hospital after my transplant I was weaker than ever before. My walking was bad enough before HSCT and after HSCT I could barely hold myself up with my own two legs. I coudlnt step up on a curb without falling right to the ground. I couldn't walk too far because my legs would get too fatigued and I would trip and fall to the ground. It was a struggle and I often wondered if the transplant even worked. I shut myself up in the house and only got out for doctor appointments and blood draws. After a couple of weeks of being home I landed right back in the hospital with a fever of 103 and they decided to admit me. My thoughts were racing, "Here we go again" being isolated in a hospital room all by myself. Chris would come visit me in the evenings for a couple of hours, but I was still lonely. I remember crying when they told me they were going to admit me because the last thing I wanted was to be locked up in the hospital again. After four days I was released and they never found out what had caused my fever, but they got it under control, I had more blood transfusions and no telling what other drugs I was given. I felt like a human pin cushion. Once released, I shut myself up in the house again to stay away from anything that could get me sick. My life was a living hell.
Finally after being home for 6 weeks I started physical therapy, I knew if I didn't start going, I would definitely never get better. It helped, it took a little time to finally get there, but I was getting stronger each day and I saw my symptoms going away and my strength coming back and 4 months post transplant I felt good enough to go back to work so, of course I'm going to be on top of the world. I was getting back into society and living again, I just don't think I handled it well because then Chris felt like I was leaving him behind and didn't need him anymore. What he didn't understand is that I was finding happiness again. Happiness within myself and with life. I was HAPPY TO BE ALIVE. I would pray daily thanking God for not listening to be about taking me. I was so thankful to be a part of this trial/study and the fact that it worked for me. I put my whole heart and soul into helping others who were struggling with their disease and/or recovery. I was chatting with numerous people about HSCT and spreading the word. Chris could have made himself a part of it, but he chose not to. Selfish maybe? I don't know. Maybe he learned that he didn't need me anymore, maybe he turned his thoughts about himself around on me to place blame for the demise of our relationship. I recently was told by a lady I met in Chicago recently that the world is constantly evolving and we either change and evolve with it or we get stuck. My opinion is that I evolved and Chris got stuck and while being stuck in his own personal hell, he realized he wasn't happy. Sure, I could have gave him more attention, but I had to learn the hard way in our relationship that the more attention I gave him, the more he backed off and pushed me away so, I was stuck on how to handle this. I thought, "If Chris wants to spend time with me he will just say so, I cant read his mind." He never really knew how to communicate with me, he was always passive aggressive and through the years I forgot how to communicate with him. I've always had this tough girl attitude about me and I think it was a way to protect myself. In the meantime, I was destroying my relationship with him. I realized though that while going through something like this and going through the recovery part there are stages that we have to experience. I knew that eventually I would slow down again and not be on the go so much, but I wasn't ready to slow down yet. I had a message to send to people. I wanted everyone to know that no matter what life throws at you, things WILL get better. Well, I am now having to learn that all over again.
August 9, 2015 Chris decided to tell me that I needed to move out because it just wasn't working for him anymore. No other communication before that. He always seemed like he was fine. I guess I was too blind to see the signs. I was devastated and blind sided and thought my life had just been ripped out form underneath me yet once again. How do I survive this? I invested almost 16 years of my life in him. I told myself after my transplant that no matter what, I would never leave him, that we could get through anything and that I wanted to be there for him if he ever got sick. I wanted to devote the rest of my life taking care of him. I had made plans to spend my commission checks on fixing up the house and getting it to the state that would make us happy and proud of living there. I had already started some of the work by ripping up the carpet. I planned to stain the concrete, redo the cabinets, repair the damages outside, treat the termites, whatever the house needed, I wanted to be the one to do it, to show him how much I appreciated what he had done for me. Well, I found out that he had fallen out of love with me months ago prior to telling me to move. Even after talking to him, he made a comment about feeling that way in October, but I remember that I was still at home quite a bit and constantly telling him how much I loved him and appreciated him, but apparently that wasn't good enough. It makes me think that it really wasn't all about me not making him happy. He was notorious about keeping score on things he did for me, but forgetting about the things I have done for him. I remember so many times offering to do things for him and he wouldn't let me. I guess he too was very independent. He didn't want to have to take care of me and did not want me taking care of him. I remember a few years ago he had complained about how his mom couldn't do anything for herself and was so dependent on his step dad to do everything for her. Change the oil in the car, wash the car for her, change the tire on the car if it needed it and he said he refuses to do that for anyone because a woman needs to learn to be able to take care of herself. My mentality is different. I know how to change a tire, I don't mind washing my own car and I have always been responsible for taking my car in to get the oil changed, but once in awhile it would be nice to see your man do it for you to show you he cares and that he's looking out for you and in return, I would do that same for him. When I would offer to wash his car he refused to let me do it. I was able to sneak it in on occasion, but his thought was "Now she's going to expect me to do something for her." Wow, what happened to just doing something nice for someone because you wanted to? When we would go visit his family, he would jump up at the drop of a pin to help his mother or sister with anything they needed, but I was a different story. I always admired how much he cared for them, but all I wanted in return was the same respect and love he gave them. All I got was the bag of negativity and resentment. Since we split, he has been telling his mom all kinds of hateful things about me and I found out recently that he had been talking to some girl, a mutual friend of ours, for he last last few months, since before we split up. I also found out that he had feelings for this girl. Now, how do I process that kind of crap? I know that time heals all wounds, but this is someone I completely trusted, 100% with my heart. He was not one to cheat and rarely one to lie. He may have kept things form me, but once confronted he always came forth with the truth. To top it off, after the split up, we were still seeing each other. Not in a relationship, but it was still intimate and we would still tell each other that we loved each other and when I wasn't around he was texting and calling her. This was NOT like him. Is he going through a midlife crisis? I believe he is. He needs to find himself and I need to heal. I have been going to therapy and finding out where my underlying issues come from, which a learned they mostly come from my childhood and my relationship with my parents. Things that I thought I had let go of were still harbored deep within me and I didn't realize it. My issues can be fixed and dealt with, I'm becoming a better person because of it by facing it head on. When I sit back and reflect on the last 16 year of my life with Chris, I realize that we were never really completely happy with one another. I just learned to accept it for what it was and for once in my life I learned to love unconditionally and now realized that I became what Chris wanted and I guess he learned that what he thought he wanted, he really didn't. I had to learn to compromise so much of the time with him, most things always had to be his way, what he wanted and I had to just deal with it and accept it. He always preached "double standards." What I learned is that he did not practice what he preached. If I felt something, I talked about it. If I was hurt, I told him, if I was depressed, I told him. If I was unhappy with my life or with him, I told him. He always knew where he stood with me, but I never got that same respect from him. If something was bothering him, I didn't know about it until something was bothering me. I fought hard for this relationship and now feel like it was just a waste of my time. Even after him telling me to move out I tried to fight for this relationship and be a better person and give him what he wanted, all the time while he is talking to some other girl telling her he has feelings for her. I feel like such a fool. I sacrificed so much of who I was while I was with him. Many times I felt like he hindered me in my journey, but I didn't care because thats how much I loved him. Hearing about Carey just ripped my heart out. He always preached being honest and loyal and yet here he was doing the opposite. I saw red, I went into psycho mode and the ugliness in me came out full force and we got into a knock down, drag out brawl. Needless to say, that ruined any chance of us ever being friends again or ever speaking or talking to one another. I learned that night that we were toxic for each other. He was so afraid of being controlled, yet he controlled me in his passive ways. I would ask him to spend time with me and put his phone down or get off his video games and he would get mad at me and tell me that it had to be on my terms and my conditions yet, he had no qualm telling me to put my phone down and spend time with him, which I did, unless I was working and chatting with a client. I often wonder what he would do if he was with someone who was married to their job. He couldn't handle it. He was not driven or goal oriented and couldn't stand it when I was. He had no motivation, no drive, no passion in anything and always put me down when he saw me being passionate about something. In his own little ways, he would belittle me and tell me that I was controlling and I think now that was his of trying to control me. How did I lose myself in this relationship? How and why did I let it happen? I knew that we should have split ways years ago, but I kept holding because I didn't want another failed relationship when the whole time, I should have walked away after the first year and gave myself the chance to meet the one who really was right for me. I know we learn something from everything we experience and there is a reason for everything that happens so, with that said, I dont regret my relationship with him. I did learn to be a little ore patient and more caring, more calm and compassionate, but I do think that I wasted my time. Call that a contradiction or whatever you want to call it, but thats how I feel, it's my feelings and I own them. Now, I sit here and think "I'm 46 years old, where do I go from here?" I know that God has a plan for me and there are better things waiting for me. I just need to learn from it and be patient. God removes people form our lives, not because of something we did, but because they have served their purpose and if they stay, they will hinder us. Each day gets better and easier, but it's still hard to understand where my journey will take me now.
Tuesday, October 20, 2015
Saturday, September 19, 2015
9/19/2015
Wow, today I had an experience of a lifetime. I flew a plane. I FLEW A PLANE and it was amazing.
I went to visit my friend Mark in Pleasanton TX. and his friend Clint came over to visit. Clint has his pilots license and is an instructor. He was talking about having to get up this morning for a flight lesson and I mentioned that it would be awesome to be able to fly. He invited me to come join him and he would take me up in the air and let me fly the plane. I got very little sleep that night and woke up this morning, bright and early, ready to go with the biggest smile on my face. He called me promptly at 10:30am and told me to come on over to the airport. Luckily, it was just around the corner from where I was staying, I was there in 5 minutes and I got to go up while he was instructing his student, but then afterwards he took me up, just the two of us, so I could sit in the pilots seat and see everything from his view and be able to control the steering myself. This has inspired me to want to take flying lessons now. This has become one of the items on my bucket list. I had a permanent grin on my face the rest of the day and I feel on top of the world. Of course, this could not have happened without going through a loss in my life.
Since recovering from my stem cell transplant I learned to have a new passion for life. I find happiness in everything, the good and the bad. I have taken on the world in full force because I know what it feels like to lose who I am and then regain it back. The loss I recently experience was that of Chris leaving me after almost 16 years together. He blindsided me, gave me no warning, no discussion in advance, no hint that he was unhappy. I dont get it, he was ok with me always being on the go before I got sick. It gave him the chance to do the things he wanted to do without having me nagging at him. I get sick and he saw that I needed him and he liked it. He liked being my caretaker, but once I got better, he no longer wanted to be a caretaker and he wanted me to be independent again and once I was completely independent, he realized he no longer liked that. He thought I no longer needed him. I didn't need him, but I alway's wanted him, which in my eyes is more important than needing someone because it shows that the person is in your life by choice. This all happened on August 9, 2015. Just a little over a month later and I am realizing he did me a favor. Although he did allow me a lot of freedom, he also hindered me from really experiencing other things in life. He always kept score, he always had negativity about everything I did. Had Chris and I not split up, I wouldn't have went to visit my friend Mark and then wouldn't have had the chance to meet Clint and fly that plane so, thank you Chris for making my life better without you.
In hindsight, looking back on the last 16 years, I see how he really treated me and held me back. I see even more, how negative he really was. I don't know why I held on for as long as I did. I loved him and I held on to that love and the hope that we might eventually figure this out and how to have a meaningful relationship with each other, but for some reason we just couldn't.
Wow, today I had an experience of a lifetime. I flew a plane. I FLEW A PLANE and it was amazing.
I went to visit my friend Mark in Pleasanton TX. and his friend Clint came over to visit. Clint has his pilots license and is an instructor. He was talking about having to get up this morning for a flight lesson and I mentioned that it would be awesome to be able to fly. He invited me to come join him and he would take me up in the air and let me fly the plane. I got very little sleep that night and woke up this morning, bright and early, ready to go with the biggest smile on my face. He called me promptly at 10:30am and told me to come on over to the airport. Luckily, it was just around the corner from where I was staying, I was there in 5 minutes and I got to go up while he was instructing his student, but then afterwards he took me up, just the two of us, so I could sit in the pilots seat and see everything from his view and be able to control the steering myself. This has inspired me to want to take flying lessons now. This has become one of the items on my bucket list. I had a permanent grin on my face the rest of the day and I feel on top of the world. Of course, this could not have happened without going through a loss in my life.
Since recovering from my stem cell transplant I learned to have a new passion for life. I find happiness in everything, the good and the bad. I have taken on the world in full force because I know what it feels like to lose who I am and then regain it back. The loss I recently experience was that of Chris leaving me after almost 16 years together. He blindsided me, gave me no warning, no discussion in advance, no hint that he was unhappy. I dont get it, he was ok with me always being on the go before I got sick. It gave him the chance to do the things he wanted to do without having me nagging at him. I get sick and he saw that I needed him and he liked it. He liked being my caretaker, but once I got better, he no longer wanted to be a caretaker and he wanted me to be independent again and once I was completely independent, he realized he no longer liked that. He thought I no longer needed him. I didn't need him, but I alway's wanted him, which in my eyes is more important than needing someone because it shows that the person is in your life by choice. This all happened on August 9, 2015. Just a little over a month later and I am realizing he did me a favor. Although he did allow me a lot of freedom, he also hindered me from really experiencing other things in life. He always kept score, he always had negativity about everything I did. Had Chris and I not split up, I wouldn't have went to visit my friend Mark and then wouldn't have had the chance to meet Clint and fly that plane so, thank you Chris for making my life better without you.
In hindsight, looking back on the last 16 years, I see how he really treated me and held me back. I see even more, how negative he really was. I don't know why I held on for as long as I did. I loved him and I held on to that love and the hope that we might eventually figure this out and how to have a meaningful relationship with each other, but for some reason we just couldn't.
Wednesday, March 4, 2015
Happy 1 Year Bday to me!!!!
What a year...
HAPPY BIRTHDAY TO ME!!!
MARCH 5, 2015 - I cannot believe, with everything I went through, that I have reached my 1 year post transplant birthday and WOW, what a year it has been. From the moment I first showed signs of my disease to this day, it was one heck of a ride. Some of the moments I would love to go back and relive, other moments I wish never existed and would be erased from my memory, but everything from this last year I cherish and hold close to my heart. Last year on this date I received my stem cells back, they call it your new birthday because that is the moment you get a brand new immune system. My new immune system has not let me down and it seems to be just as strong as it was before I ever got CIDP.
So, where do I start? I have already blogged about most of my milestones when I first started this blog, but one milestone I have not shared yet was being able to wear heels again on February 21st for a Chamber of Commerce Gala I attended with my teammates. That was the first time in 2 1/2 years, it may seem like a small thing to some, but it's a huge thing to accomplish for those of us who at one time, had no strength to balance themselves even when standing flat on their feet. My next goal is to master walking in flip flops again. I still have trouble bending my toes so, I can't hold the flip flop on my feet. I've tried and when I walk, my feet just leave the shoe behind and this saddens me because summer will be here before you know it.
Since my last post, I have started a new job working for Keller Williams as a Realtor. I decided that life was too short, it was time to spread my wings and face my fears. I got my Real Estate license 4 years ago and Apartment Locating is not what I wanted to do for the rest of my life, I'm ready to make peoples dreams come true. I love to see people smile and buying your first home is exciting, even for those who aren't buying for the first time, but who might be expanding for a bigger family. I am not sure that I could have made that jump in my career without going through this transplant. If I can face my fears of chemo and hospitals and needles, I think I can face most anything. Let's see where this journey takes me.
Speaking of my fear of chemo, I sometimes sit back and think about when I was first told about HSCT, not knowing what it was and not knowing chemo was involved. I can't believe I almost gave up the idea of not having the transplant because of that fear of losing my stupid hair or of throwing up. I am so thankful I gave that up to God because otherwise, I might be sitting in a wheelchair right now and I definitely would not be typing this blog because I would not have had the energy or the drive and I would probably be sitting in a corner having a one man pity party. Instead, I sit here in amazement of what life has to offer, the joy and happiness that I feel inside because of my new surge of energy I have, my outlook on things are so different, I stopped letting my fears control me, that may get me in trouble, but how can I sit back and just let life pass me by when I have been given a second chance? I want to get more involved in my community and spread the word of HSCT, volunteer with organizations to help spread awareness, help raise money for people who struggle to pay for treatments. I didn't have insurance when I first became ill and when I was told by my doctor that I needed to see a specialist, all I saw were dollar signs. Luckily I was able to get insurance and even more lucky that I picked somewhat good insurance that covered most of the cost of my treatments. I'm talking about my IVIG treatments I received before transplant. At $40K per treatment, there is no way I could have swung that without the help of insurance, what about those who can't afford insurance, or who have high co-pays. So many things on my mind, so many thoughts and ideas of how to help others and pay it forward. To start out small, I started putting together chemo care packages and sending them out to patients going through HSCT for their autoimmune disease. I haven't been able to do it for everyone, the cost is not cheap, but there are some that stand out to me and have touched my heart strings in one way or another and I try to get a package out to them. I want to give back as much as I can because when I was down and at my worst, people came out of the woodworks to help me, physically, emotionally and financially. Complete strangers donated to my go fund me page, even to this day a donation here and there may trickle in so, I use that money to pay it forward to others, to show my appreciation for everything I have been given.
Throughout all of this, I have always kept a smile on my face, even when I was at my worst and I have, for the most part, kept a positive attitude. Today, I have the biggest smile on my face for two reasons. One reason is the obvious, I get to celebrate a year of being CIDP free and the other reason is because of the birthday present I received yesterday. I was given the news that my friend Don Poprock, whom I met in Chicago while going through my transplant, was accepted into the trial to receive his own transplant for CIDP. Exactly one year ago he was turned down and I think he may have almost given up the idea of ever trying again. I am so glad he did not give up and persevered.
Bryan Hinkle, Me and Don Poprock
February 26, 2014
Time to say goodbye and let's hope for an even greater year than this last. Thank you stem cells for giving me my health back.
HAPPY BIRTHDAY TO ME!!!
MARCH 5, 2015 - I cannot believe, with everything I went through, that I have reached my 1 year post transplant birthday and WOW, what a year it has been. From the moment I first showed signs of my disease to this day, it was one heck of a ride. Some of the moments I would love to go back and relive, other moments I wish never existed and would be erased from my memory, but everything from this last year I cherish and hold close to my heart. Last year on this date I received my stem cells back, they call it your new birthday because that is the moment you get a brand new immune system. My new immune system has not let me down and it seems to be just as strong as it was before I ever got CIDP.
So, where do I start? I have already blogged about most of my milestones when I first started this blog, but one milestone I have not shared yet was being able to wear heels again on February 21st for a Chamber of Commerce Gala I attended with my teammates. That was the first time in 2 1/2 years, it may seem like a small thing to some, but it's a huge thing to accomplish for those of us who at one time, had no strength to balance themselves even when standing flat on their feet. My next goal is to master walking in flip flops again. I still have trouble bending my toes so, I can't hold the flip flop on my feet. I've tried and when I walk, my feet just leave the shoe behind and this saddens me because summer will be here before you know it.
Since my last post, I have started a new job working for Keller Williams as a Realtor. I decided that life was too short, it was time to spread my wings and face my fears. I got my Real Estate license 4 years ago and Apartment Locating is not what I wanted to do for the rest of my life, I'm ready to make peoples dreams come true. I love to see people smile and buying your first home is exciting, even for those who aren't buying for the first time, but who might be expanding for a bigger family. I am not sure that I could have made that jump in my career without going through this transplant. If I can face my fears of chemo and hospitals and needles, I think I can face most anything. Let's see where this journey takes me.
Speaking of my fear of chemo, I sometimes sit back and think about when I was first told about HSCT, not knowing what it was and not knowing chemo was involved. I can't believe I almost gave up the idea of not having the transplant because of that fear of losing my stupid hair or of throwing up. I am so thankful I gave that up to God because otherwise, I might be sitting in a wheelchair right now and I definitely would not be typing this blog because I would not have had the energy or the drive and I would probably be sitting in a corner having a one man pity party. Instead, I sit here in amazement of what life has to offer, the joy and happiness that I feel inside because of my new surge of energy I have, my outlook on things are so different, I stopped letting my fears control me, that may get me in trouble, but how can I sit back and just let life pass me by when I have been given a second chance? I want to get more involved in my community and spread the word of HSCT, volunteer with organizations to help spread awareness, help raise money for people who struggle to pay for treatments. I didn't have insurance when I first became ill and when I was told by my doctor that I needed to see a specialist, all I saw were dollar signs. Luckily I was able to get insurance and even more lucky that I picked somewhat good insurance that covered most of the cost of my treatments. I'm talking about my IVIG treatments I received before transplant. At $40K per treatment, there is no way I could have swung that without the help of insurance, what about those who can't afford insurance, or who have high co-pays. So many things on my mind, so many thoughts and ideas of how to help others and pay it forward. To start out small, I started putting together chemo care packages and sending them out to patients going through HSCT for their autoimmune disease. I haven't been able to do it for everyone, the cost is not cheap, but there are some that stand out to me and have touched my heart strings in one way or another and I try to get a package out to them. I want to give back as much as I can because when I was down and at my worst, people came out of the woodworks to help me, physically, emotionally and financially. Complete strangers donated to my go fund me page, even to this day a donation here and there may trickle in so, I use that money to pay it forward to others, to show my appreciation for everything I have been given.
Throughout all of this, I have always kept a smile on my face, even when I was at my worst and I have, for the most part, kept a positive attitude. Today, I have the biggest smile on my face for two reasons. One reason is the obvious, I get to celebrate a year of being CIDP free and the other reason is because of the birthday present I received yesterday. I was given the news that my friend Don Poprock, whom I met in Chicago while going through my transplant, was accepted into the trial to receive his own transplant for CIDP. Exactly one year ago he was turned down and I think he may have almost given up the idea of ever trying again. I am so glad he did not give up and persevered.
February 26, 2014
Time to say goodbye and let's hope for an even greater year than this last. Thank you stem cells for giving me my health back.
Monday, December 8, 2014
When I had decided to go with the option of the stem cell transplant I had started a go fund me page to help raise money for the transplant, help with bills while being unemployed and to help with follow up visits. I had stopped posting on the page after my transplant because I figured people would no longer be willing to donate if i had already had the transplant, right? Well, i was wrong because out of the blue i recently had a donation made on my page and I was ecstatic over it. Such a relief because, even though my insurance paid for the transplant, it didnt pay for everything involved, Im still receiving bills from Northwestern for my share and now, since the transplant, I had to change insurance and Northwestern is no longer a preferred provider so, that means I have to meet a $10K deductible before insurance will even start covering anything. I still have to continue going back to Chicago for follow up visits until I hit my 5 year mark. This past October I went for my 6 month check (at 7 months) and found out the hard way that Northwestern was not a preferred provider when I received a bill in the mail for close to $10k for all the testing and blood work I received while I was there, I will then have to go back again sometime between March and June and the once a year thereafter. This adds up and to top it off, I also have the cost of the hotel and the flights, those are no longer being donated and my insurance no longer reimburses me on flights or lodging. So, can you see how I would be thrilled to see that I received a donation after all these months. This will go toward my flight for my next follow up and, I think its time that I start shopping for new insurance.
There are some amazing and caring people out there in the world and I am so grateful to have them in my life.
Here is a link to my go fund me if you would like to donate or know of anyone who would. Even small donations of $5 or $!0 add up.
http://www.gofundme.com/Staceys-Stem-Cell-Fund
There are some amazing and caring people out there in the world and I am so grateful to have them in my life.
Here is a link to my go fund me if you would like to donate or know of anyone who would. Even small donations of $5 or $!0 add up.
http://www.gofundme.com/Staceys-Stem-Cell-Fund
Wednesday, November 19, 2014
Interested in applying for the trial/study for HSCT for CIDP? Click the link below
Dr. Burt also does Stem Cell Transplants for other autoimmune diseases as well, such as Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Phemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymositis, Scleroderma and Sarcoidosis.
https://clinicaltrials.gov/ct2/show/study/NCT00278629?term=CIDP&rank=19#contacts
If the link does not work, here are the contents:
Purpose
Show Detailed Description
Eligibility
Contacts and Locations
More Information
No publications provided
Additional relevant MeSH terms:
ClinicalTrials.gov processed this record on November 17, 2014
Dr. Burt also does Stem Cell Transplants for other autoimmune diseases as well, such as Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Phemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymositis, Scleroderma and Sarcoidosis.
https://clinicaltrials.gov/ct2/show/study/NCT00278629?term=CIDP&rank=19#contacts
If the link does not work, here are the contents:
Hematopoietic Stem Cell Transplantation in Chronic Inflammatory Demyelinating Polyneuropathy
Verified September 2014 by Northwestern University
Sponsor:
Northwestern University
Information provided by (Responsible Party):
Richard Burt, MD, Northwestern University
ClinicalTrials.gov Identifier:
NCT00278629
First received: January 16, 2006
Last updated: September 23, 2014
Last verified: September 2014
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- No Study Results Posted
- Disclaimer
- How to Read a Study Record
Purpose
Chronic inflammatory demyelinating polyneuropathy is disease believed to be due to immune cells, cells which normally protect the body, but are now attacking the nerves in the body. As a result, the affected nerves fail to respond, or respond only weakly, to stimuli causing numbing, tingling, pain, and progressive muscle weakness. The likelihood of progression of the disease is high. This study is designed to examine whether treating patients with high dose cyclophosphamide (a drug which reduces the function of the immune system) and ATG (a protein that kills the immune cells that are thought to be causing your disease), followed by return of the previously collected blood stem cells will stop the progression of CIDP. Stem cells are undeveloped cells that have the capacity to grow into mature blood cells, which normally circulate in the blood stream. The purpose of the high dose cyclophosphamide and ATG is to destroy the cells in the immune system. The purpose of the stem cell infusion is to evaluate whether this treatment will produce a normal immune system that will no longer attack the body.
| Condition | Intervention | Phase |
|---|---|---|
| Polyneuropathy | Biological: hematopoietic stem cell transplantation | Phase 2 |
| Study Type: | Interventional |
| Study Design: | Endpoint Classification: Safety/Efficacy Study Intervention Model: Single Group Assignment Masking: Open Label Primary Purpose: Treatment |
| Official Title: | Non-myeloablative Autologous Hematopoietic Stem Cell Transplantation in Patients With Chronic Inflammatory Demyelinating Polyneuropathy: A Phase II Trial |
Resource links provided by NLM:
Genetic and Rare Diseases Information Center resources: Chronic Inflammatory Demyelinating Polyneuropathy
U.S. FDA Resources
Further study details as provided by Northwestern University:
Primary Outcome Measures:
- Survival;Disease improvement;Time to disease progression [ Time Frame: 5 years after transplant ] [ Designated as safety issue: Yes ]
| Estimated Enrollment: | 50 |
| Study Start Date: | March 2005 |
| Estimated Study Completion Date: | December 2016 |
| Estimated Primary Completion Date: | December 2015 (Final data collection date for primary outcome measure) |
| Arms | Assigned Interventions |
|---|---|
| Experimental: Hematopoietic stem cell transplantation
Autologous hematopoietic stem cell transplantation will be performed after conditioning regimen
| Biological: hematopoietic stem cell transplantation
Autologous hematopoietic stem cell transplantation
|
Show Detailed Description Eligibility| Ages Eligible for Study: | 18 Years to 65 Years |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
Criteria
Inclusion criteria:
- EMG definite CIDP according to the EFNS / EPS criteria (section 3.2.4c) AND
- Clinically typical CIDP (section 3.2.4 b) AND
- Failure to tolerate or respond to, or an incomplete response to, or relapse after at least 3 months of conventional treatment consisting of corticosteroids (equivalent dosage of prednisone 1.0/mg/day to 0.75mg/kg/day to start with adequate tapering trials of no less than 0.5mg/kg/day), and either IVIG or plasmapheresis
- Failure to respond to therapy is defined by :
- Persistent muscle weakness Grade 3/5 or worse (MRC) in at least one muscle or grade 4/5 in at least two muscle groupsOR
- Persistent dysphagia documented by either aspiration or insufficient clearing on video fluoroscopic examination.OR
- Persistent incapacitating sensory loss (e.g. gait ataxia, falls > 1/month)AND
- If patients are on IVIG or plasmapheresis, neurologic condition is documented to deteriorate (for example, new, increase fingertip parasthesias, or increased leg heaviness) upon stopping IVIG (or plasmapheresis)@
- Monoclonal gammopathy of undetermined significance (MUGS) (in which the pathogenesis of are thought to be the same as CIDP) will be allowed provided bone marrow aspirate and biopsy rules out multiple myeloma.
-Other immune mediated variants of CIDP will be included if they have auto- antibodies e.g. Anti GM1 or Anti-MAG.
Exclusion Criteria:
- Any evidence of hereditary cause for neuropathy that is known or likely hereditary demyelination neuropathy because of family history, foot deformity, mutilation of hands or feet, retinitis pigmentosa, ichthyosis, or liability to pressure palsies.
- Diptheria, drug, or toxin exposure likely to be cause of neuropathy
- Multifocal motor neuropathy
- Presence of sphincter disturbance
- Conditions in which the pathogenesis of the neuropathy may be different from CIDP such as: Lyme disease (Borrelia burgdorferi infection), POEMS syndrome, Osteosclerotic myeloma, malignancies such as Waldenstrom macroglobulinemia, and Castleman's)
- Multiple myeloma
- HIV positive
- Insulin dependent Diabetes mellitus
- Chronic active hepatitis
- Age > 65 years old or < 18 years old
- Significant end organ damage such as (not caused by CIDP):
- LVEF <40% or deterioration of LVEF during exercise test on MUGA or echocardiogram.
- Untreated life-threatening arrhythmia.
- Active ischemic heart disease or heart failure or myocardial infarction within the last 6 months
- DLCO <40% or FEV1/FEV < 50%
- Serum creatinine >2.0.
- Liver cirrhosis, transaminases > 2 x of normal limits or bilirubin >2.0 unless due to Gilbert disease.
- Prior history of malignancy except localized basal cell or squamous skin cancer.
- Positive pregnancy test, inability or unwillingness to pursue effective means of birth control, or failure to willingly accept or comprehend irreversible sterility as a side effect of therapy.
- Psychiatric illness or mental deficiency making compliance with treatment or informed consent impossible.
- Inability to give informed consent.
- Major hematological abnormalities such as platelet count less than 100,000/ul or ANC less than 1000/ul.
- Failure to collect at least 2.0 x 106 CD34+ cells by apheresis and, if necessary, bone marrow harvest is a contraindication to treatment, i.e., receiving the conditioning regimen.
Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.
Please refer to this study by its ClinicalTrials.gov identifier: NCT00278629
Please refer to this study by its ClinicalTrials.gov identifier: NCT00278629
Contacts
| Contact: Dzemila Spahovic, MD | 312-695-4960 | d-spahovic@northwestern.edu |
Locations
| United States, Illinois | |
| Northwestern University, Feinberg School of Medicine | Recruiting |
| Chicago, Illinois, United States, 60611 | |
| Principal Investigator: Richard Burt, MD | |
| Sub-Investigator: Kathleen Quigley, R.N.;MBA | |
| Sub-Investigator: Kimberly Yaung, R.N. | |
| Principal Investigator: Robert Sufit Sufit, MD | |
| Sub-Investigator: Jeff Allen, MD | |
Sponsors and Collaborators
Northwestern University
Investigators
| Principal Investigator: | Richard Burt, MD | Northwestern University |
More Information No publications provided
| Responsible Party: | Richard Burt, MD, MD, Northwestern University |
| ClinicalTrials.gov Identifier: | NCT00278629 History of Changes |
| Other Study ID Numbers: | NU FDA CIDP.AUTO2003 |
| Study First Received: | January 16, 2006 |
| Last Updated: | September 23, 2014 |
| Health Authority: | United States: Food and Drug Administration |
Additional relevant MeSH terms:
| Polyneuropathies Polyradiculoneuropathy, Chronic Inflammatory Demyelinating Autoimmune Diseases Autoimmune Diseases of the Nervous System Demyelinating Diseases | Immune System Diseases Nervous System Diseases Neuromuscular Diseases Peripheral Nervous System Diseases Polyradiculoneuropathy |
ClinicalTrials.gov processed this record on November 17, 2014
Monday, November 17, 2014
Where did I leave off? That's right, my last hospital stay and the weight I loss. I have since gained half the weight back and look much, much better. No more bony, skinny arms and legs, I'm healthy again. This journey has been a crazy one, but it's been an experience and one that I am not only grateful to be on, but happy I did it and would do it all over again.
After returning home from my last hospital stay here locally, I rested up for a couple of more weeks and then decided I wasn't going to get stronger and better if I didn't follow doctors orders and go to Physical Therapy. I was dreading this because I don't like meeting strangers and having to explain my story, or I didn't at that time. I finally settled on Concentra because they had an Occupational Therapist and a Physical Therapist under the same roof.
Physical Therapy, this is where the fun begins. I hated being there, I hated having to tell the therapist my story, I hated having to tell him what CIDP was and that I had trouble walking and that I refused to wear my AFO's and I hated everyone and everything. I didn't want to do a balance test and a walking test and didn't want to lay on the table for him to stretch out my legs and muscles and I hated getting on the stationary bike to build that strength because I was already short of breath and everything he made me do made it hard for me to breathe and I will NOT show my weaknesses until, the day I fell during therapy and couldn't get up. My Physical Therapist became my hero that day. It wasn't anything big, but just the way he handled the situation and let me know that it was okay. I started to enjoy going to therapy after that and got rid of my poor attitude and stubbornness. My therapists name was Bob and he was the BOMB. Although, there were those moments I would finish up with an activity he had me doing and he would just sit at his desk on his computer, Im sure he was working, but I'm your patient right now, I am the one paying you, pay attention to me and let me know what I need to do next. My PT visits would end up being an hour and a half to two hours long and I loved it. Bob was entertaining and always making us laugh, I loved his personality. If you live in Austin and ever need a PT, look up Bob Carl at Concentra in South Austin, you couldn't find anyone better.
I wont even get into the Occupational Therapy part of it because that was the most boring, dreadful therapy ever. Nothing fun or funny about it. If I thought I could have made it without OT then I would have skipped it all together, but I can say it helped tremendously.
I attended PT and OT from Mid-April to the end of July. Once June rolled around I found out that Bob had cancer and by August he would no longer be there for at least 3 months so that he could receive his treatment in Houston at MD Anderson.
We had these made to support Bob in his battle with Throat Cancer.
This is me with my new Therapist, Cierra the receptionist and my Occupatinal
Therapist.
I continued going to PT and had a different therapist, but it just wasn't the same. I have a short attention span so, if you don't make it fun, then I lose interest. I decided to skip the month of August and focus on work and I would come back later, that never happened.
August 1st, I attended the Younique convention. Remember those AFO's I said I refused to wear? Well, after enough falls and pleading with my PCP, I decided to start wearing them. Younique is a make-up line that I decided to start selling for extra income and they had their convention in Grapevine at the Gaylord Hotel. Two days of classes and demonstrations and meeting new people. I had started wearing my AFO's mid May and I had decided to stop wearing them this weekend at the convention. I did NOT want to look like the handicapped person I thought I was. See that, I "thought" I was handicapped. After this weekend at the convention, I realized that my foot drop was going away, it was not as pronounced as it had been in the past. Those weeks of physical therapy had paid off too, my legs were stronger and my balance was back to normal. August became the month of new beginnings. I ditched those AFO's after that weekend and to this day they sit in the trunk of my car. I never went back to physical therapy because I could see that I was able to do this on my own. Since then, it gets better and better on a daily and monthly basis. I still want to go back to PT for one last test to not only see Bob and how he is doing, but also to see if I score different on my test than when I first started. I know I will, I just want to see how much has changed and how far i have come along.
September 5, 2014: This is my 6 month post transplant birthday and this brought another exciting milestone. Here is my facebook post from the day before...
Ok, I did it. I finally dusted off my bike and went for a ride. I haven't been on it in about a year and a half to two years. I wasn't able to keep my balance in order to throw my leg over the bike, this time last year I wouldn't have been able to open my hands wide enough to grab the brakes. I also didn't have the strength to push the peddles, but tonight was a different story. I was able to do it all. My ticker still works and got a good workout, my legs were crying to come back home, but my body was a trooper. Tomorrow is my 6 month post transplant birthday and this is how I celebrated.
That was one of the happiest days so far since my transplant. I haven't been on my bike since then, but to know that I can do it is an accomplishment. Now I just need to motivate myself to ride it more often and make it a habit. I bought that bike 7 months before I got sick so, it broke my heart to see it sit in the garage and rot. I almost sold it a couple of times so maybe someone cold get some use out of it and because I could have used the money, but each time I talked myself out of it because I was determined to get back on it one day. I was not going to let this disease win.
Over time throughout the month I noticed I was getting better and better at balancing on one foot. Before the transplant, just barely lifting my foot off the ground would throw my balance off. Now, I can get dressed and put my pants on, one leg at a time, without leaning against the wall for balance or sitting on the bed. It took me 6 months to get to this point and I am feeling human again.
I was supposed to go back to Chicago at the beginning of this month, September, for my 6 month evaluation, but I put it off for another month. I wanted to go back when my friend Brenda was going for her one year evaluation. Plus, Chicago is prettier and much more pleasant in October.
September 30 - October 4: Chicago and my Evaluation
September 30th: This day started bright and early. I scheduled a 6am flight, we would land in Chicago at 8:30am. I figured that would give us the day to play and explore, but it didn't work out that way. A few days beforehand I have received a call from Nicole Peters, Dr. Burt's assistant, asking if we could change my appointment with Burt from Wednesday to Tuesday the 30th. Ok, no problem, that would just give us the following day to do whatever we wanted. We, my friend April and I, boarded the plane and patiently waited, and waited. They were having issues with the plane so they decide to make us get off the plane and catch a new flight. Fortunately for me, my flight took off at 6:30am and we have a layover in Nashville and then on to Chicago. I go to Chicago at 11:30am. Unfortunately for April, she couldn't catch that flight with me because she had a conference call that she had to be on at 10:30am, there was no way she would be able to be on that call if she would have caught that next flight with me. She settled on a later flight, I cant remember when it was supposed to leave, but I do remember she was supposed to land in Chicago at 3:30pm. Well that didn't happen either, I can't recall the circumstances that came about, but she didn't show up at the hotel room that night until 11pm. Talk about a long day for both of us considering we got up at 3am that morning.
After I had landed at 11:30, I met up with Brenda and we caught a ride to the hotel where we ran into Donna Hightower and her husband. Donna received a call from Paula at Dr. Burt''''s office and we were all three told to come on to our appointments. I had missed my scheduled time because it was set 11am and I was still on the plane at that time, but Dr. Burt is so awesome at fitting you in whenever you can get there. He cares so much for his patients and loves his job, he makes adjustments when needed.
Donna went on ahead of me and Brenda, but we weren't far behind. I was the last to be seen by Dr. Burt, but once I got back to the exam room and he walked in the door, I asked him if I could give him a hug. He smiled and of course let me and I gave him the biggest hug ever with a big fat Thank You to follow and told him I felt like a million bucks. I then gave Paula a hug too and let them know I was so grateful. I know Dr. Burt lives for these moments because it shows him that he is doing good and there's a purpose in what he does. These are the reasons he does this research for stem cell transplants. I got a good check up and Dr. Burt said I could just expect to continue getting better, I told him that I did expect that and knew that i would continue on the path that I'm on. I also told him and Paula that hopefully soon they could expect a video of me running.
After our appointment with Burt, Brenda and I had blood work done and then met Donna and her husband at Pippen's Irish Pub and ate the BEST hot dog ever in the world. I ordered the charred cheddar dog Chicago style along with cheese fries and an ice cold beer. A great meal after getting a great report from Burt.
After returning back to the hotel and waiting on April to arrive, I rested up some, but decided to go bother Brenda, I figured this may be the only chance to have "us" time with nobody else around and give us a chance to get to know one another better. We laid in the bed telling our secrets and laughing and had a great time talking. I was getting tired and knew April was about to be there so I went back to my room.
(This is me right before going to our appointment with Dr. Burt, trying on one of Brenda's wigs. I forgot what it felt like to have longer hair)
Wednesday, October 1st. At 10am we had a meeting with Chicago Greeters to get a tour of Chicago. This is a pretty cool thing Chicago offers, it's free and they give you a 2 to 4 hour tour of anything you want to see. You have to be a visitor, you cannot be a local, and it is given by a local who volunteers their time to tell you about their wonderful city and the many things it has to offer. We got a tour of the loop, saw some pretty cool stuff and enjoyed our day.
Me, Brenda, Donna & April October 1, 2014
Later that day Brenda and I met up with Jessica, the photographer that snapped a few photos of us at the Rosebud back in March. She generously took our pictures for us t no charge. Like I said before, she has a heart of gold. Here are some pics she took.
Thursday October 2, 2014 consisted of going back to the hospital to have an EMG and NCV test. This is not a pleasant experience. The NCV consist of them sticking electrodes on you and zapping you with little shocks of electricity to see how quickly your nerves relay the message. The EMG is the same thing except they stick a tiny needle into your muscles. This test hurts, not too terribly bad, but enough to get you very agitated.
Dr. Allen about to give me my EMG test
Receiving my NCV Test
About to start the NCV test on my arm
Once I left the hospital I was on my own. Brenda was about to have hers done, Donna was out doing her own thing and April stayed back in the hotel room to work. I decided to take this time to do some roaming around on my own and take some pictures.
When I went to Chicago last year in October & November I wanted to go inside this church and just never got the chance because the person(s) I took with me either went without me while I was at my doctors visits or they just didn't want to go in, so I figured now was my chance to do it, I was by myself, I had nobody else to take into consideration which meant I could stay as long as I wanted, be as slow as I wanted to be so, I went inside, had a seat and prayed. I thanked God for this opportunity, for a chance to have my life back, for my family and friends who were there with me the whole way trough this ordeal, for Chris who has ben by my side the whole time and for all my friends I have met on the CIDP and HSCT group pages on facebook who were there to support me. I felt so blessed.
After having my little chat with God, I went back to the hotel room to meet up with April and figure out what we were going to do about dinner. The winner that night for dinner, Jake Melnick's. Home of the best wings in Chicago.
Try the Firecracker wings and the fire roasted Artichoke
Friday October 3, 2014
After the EMG and NCV test yesterday, I had to go back to see Dr. Allen to discuss the results and answer a bunch of questions regarding what I can and can't do on a scale of 1 to 5. I also had to get up out of a chair and walk to a point down the hallway and back and they timed me to see how fast I was compared to last time. Significant difference for the better this time around. Dr. Allen told me that he could see great results with the EMG (muscles) and only a slight change on the NCV compared to last years results. He did explain though, it doesn't matter what the test results say, what matters most is how I fell and how I'm doing. I let him know I was feeling great and doing perfect. He was not as encouraging as Dr. Burt was. He told me I may not see anymore changes and that I may not get any better than I was at that point. I think maybe he didn't want me to get my hopes up, you know, use a little reverse psychology on me. That doesn't work with me. I know in my heart that I WILL get better, but I told him that even if I didn't, I was happy with my results now and anything beyond this would be a little bonus.
That evening me, April and Donna went back to Pippen's Irish pub for another hot dog and a drink before meeting up with Brenda and Donna's husband to go to the top of the Hancock tower for cocktails. We figured our last night there deserved a special treat and this was just the place. We found a spot right in the corner of the bar with great views of downtown Chicago all lit up.
I have no idea how I was able to get those two pictures to connect like that, but it looks pretty cool. That bottom picture is Donna, Me and Brenda. Oct. 3, 2014 Stem Cell Sisters for life.
Saturday October 4, 2014
Our last day in Chicago and it was cold. I believe it was around 42 outside and raining. April and I slept in, took our time getting ready and packed up. We had a lunch date with another HSCT patient, Scott Hucks. I didn't bring a coat with me because I didn't think it would get cold enough while we were there so, we stopped at the H&M store to do a little shopping, oh darn it, lol. I found a coat, a sweater and I was good to go. Off to meet Scott, his girlfriend Heather and his brother Luke. Can you guess where we met them? That's right, Jake Melnick's. This has become my all time favorite place in Chicago to go for good food and drinks.
Luke, Me, Scott and Heather
Scott and me. October 4, 2014
You go Scott, kick MS to the curb.
April and I finally had to leave to go catch our flight back to Austin. Good Bye Chicago, I will miss you, til next time.
Back home and back to daily life. The weeks and days passed and on October 24th I had to run down the driveway after my 2 year old granddaughter. Wait, what? Did you hear that? I RAN. It was by accident that I found out, but I did it.
My facebook post on October 25th: 2 1/2 years ago I acquired an autoimmune disease that made it impossible to run, heck even walking was hard. In March I had a stem cell transplant to restart my immune system and gave me a new one. Today at almost 8 months post transplant, here I am running. Not perfect, but way better than before the transplant. For those of you who wonder why I had the transplant or wonder if it was worth it, YOU BET. Watch and decide for yourself. Stem cell transplants work.
After returning home from my last hospital stay here locally, I rested up for a couple of more weeks and then decided I wasn't going to get stronger and better if I didn't follow doctors orders and go to Physical Therapy. I was dreading this because I don't like meeting strangers and having to explain my story, or I didn't at that time. I finally settled on Concentra because they had an Occupational Therapist and a Physical Therapist under the same roof.
Physical Therapy, this is where the fun begins. I hated being there, I hated having to tell the therapist my story, I hated having to tell him what CIDP was and that I had trouble walking and that I refused to wear my AFO's and I hated everyone and everything. I didn't want to do a balance test and a walking test and didn't want to lay on the table for him to stretch out my legs and muscles and I hated getting on the stationary bike to build that strength because I was already short of breath and everything he made me do made it hard for me to breathe and I will NOT show my weaknesses until, the day I fell during therapy and couldn't get up. My Physical Therapist became my hero that day. It wasn't anything big, but just the way he handled the situation and let me know that it was okay. I started to enjoy going to therapy after that and got rid of my poor attitude and stubbornness. My therapists name was Bob and he was the BOMB. Although, there were those moments I would finish up with an activity he had me doing and he would just sit at his desk on his computer, Im sure he was working, but I'm your patient right now, I am the one paying you, pay attention to me and let me know what I need to do next. My PT visits would end up being an hour and a half to two hours long and I loved it. Bob was entertaining and always making us laugh, I loved his personality. If you live in Austin and ever need a PT, look up Bob Carl at Concentra in South Austin, you couldn't find anyone better.
I wont even get into the Occupational Therapy part of it because that was the most boring, dreadful therapy ever. Nothing fun or funny about it. If I thought I could have made it without OT then I would have skipped it all together, but I can say it helped tremendously.
I attended PT and OT from Mid-April to the end of July. Once June rolled around I found out that Bob had cancer and by August he would no longer be there for at least 3 months so that he could receive his treatment in Houston at MD Anderson.
This is me with my new Therapist, Cierra the receptionist and my Occupatinal
Therapist.
I continued going to PT and had a different therapist, but it just wasn't the same. I have a short attention span so, if you don't make it fun, then I lose interest. I decided to skip the month of August and focus on work and I would come back later, that never happened.
August 1st, I attended the Younique convention. Remember those AFO's I said I refused to wear? Well, after enough falls and pleading with my PCP, I decided to start wearing them. Younique is a make-up line that I decided to start selling for extra income and they had their convention in Grapevine at the Gaylord Hotel. Two days of classes and demonstrations and meeting new people. I had started wearing my AFO's mid May and I had decided to stop wearing them this weekend at the convention. I did NOT want to look like the handicapped person I thought I was. See that, I "thought" I was handicapped. After this weekend at the convention, I realized that my foot drop was going away, it was not as pronounced as it had been in the past. Those weeks of physical therapy had paid off too, my legs were stronger and my balance was back to normal. August became the month of new beginnings. I ditched those AFO's after that weekend and to this day they sit in the trunk of my car. I never went back to physical therapy because I could see that I was able to do this on my own. Since then, it gets better and better on a daily and monthly basis. I still want to go back to PT for one last test to not only see Bob and how he is doing, but also to see if I score different on my test than when I first started. I know I will, I just want to see how much has changed and how far i have come along.
September 5, 2014: This is my 6 month post transplant birthday and this brought another exciting milestone. Here is my facebook post from the day before...
Ok, I did it. I finally dusted off my bike and went for a ride. I haven't been on it in about a year and a half to two years. I wasn't able to keep my balance in order to throw my leg over the bike, this time last year I wouldn't have been able to open my hands wide enough to grab the brakes. I also didn't have the strength to push the peddles, but tonight was a different story. I was able to do it all. My ticker still works and got a good workout, my legs were crying to come back home, but my body was a trooper. Tomorrow is my 6 month post transplant birthday and this is how I celebrated.
That was one of the happiest days so far since my transplant. I haven't been on my bike since then, but to know that I can do it is an accomplishment. Now I just need to motivate myself to ride it more often and make it a habit. I bought that bike 7 months before I got sick so, it broke my heart to see it sit in the garage and rot. I almost sold it a couple of times so maybe someone cold get some use out of it and because I could have used the money, but each time I talked myself out of it because I was determined to get back on it one day. I was not going to let this disease win.
Over time throughout the month I noticed I was getting better and better at balancing on one foot. Before the transplant, just barely lifting my foot off the ground would throw my balance off. Now, I can get dressed and put my pants on, one leg at a time, without leaning against the wall for balance or sitting on the bed. It took me 6 months to get to this point and I am feeling human again.
I was supposed to go back to Chicago at the beginning of this month, September, for my 6 month evaluation, but I put it off for another month. I wanted to go back when my friend Brenda was going for her one year evaluation. Plus, Chicago is prettier and much more pleasant in October.
September 30 - October 4: Chicago and my Evaluation
September 30th: This day started bright and early. I scheduled a 6am flight, we would land in Chicago at 8:30am. I figured that would give us the day to play and explore, but it didn't work out that way. A few days beforehand I have received a call from Nicole Peters, Dr. Burt's assistant, asking if we could change my appointment with Burt from Wednesday to Tuesday the 30th. Ok, no problem, that would just give us the following day to do whatever we wanted. We, my friend April and I, boarded the plane and patiently waited, and waited. They were having issues with the plane so they decide to make us get off the plane and catch a new flight. Fortunately for me, my flight took off at 6:30am and we have a layover in Nashville and then on to Chicago. I go to Chicago at 11:30am. Unfortunately for April, she couldn't catch that flight with me because she had a conference call that she had to be on at 10:30am, there was no way she would be able to be on that call if she would have caught that next flight with me. She settled on a later flight, I cant remember when it was supposed to leave, but I do remember she was supposed to land in Chicago at 3:30pm. Well that didn't happen either, I can't recall the circumstances that came about, but she didn't show up at the hotel room that night until 11pm. Talk about a long day for both of us considering we got up at 3am that morning.
After I had landed at 11:30, I met up with Brenda and we caught a ride to the hotel where we ran into Donna Hightower and her husband. Donna received a call from Paula at Dr. Burt''''s office and we were all three told to come on to our appointments. I had missed my scheduled time because it was set 11am and I was still on the plane at that time, but Dr. Burt is so awesome at fitting you in whenever you can get there. He cares so much for his patients and loves his job, he makes adjustments when needed.
Donna went on ahead of me and Brenda, but we weren't far behind. I was the last to be seen by Dr. Burt, but once I got back to the exam room and he walked in the door, I asked him if I could give him a hug. He smiled and of course let me and I gave him the biggest hug ever with a big fat Thank You to follow and told him I felt like a million bucks. I then gave Paula a hug too and let them know I was so grateful. I know Dr. Burt lives for these moments because it shows him that he is doing good and there's a purpose in what he does. These are the reasons he does this research for stem cell transplants. I got a good check up and Dr. Burt said I could just expect to continue getting better, I told him that I did expect that and knew that i would continue on the path that I'm on. I also told him and Paula that hopefully soon they could expect a video of me running.
After our appointment with Burt, Brenda and I had blood work done and then met Donna and her husband at Pippen's Irish Pub and ate the BEST hot dog ever in the world. I ordered the charred cheddar dog Chicago style along with cheese fries and an ice cold beer. A great meal after getting a great report from Burt.
After returning back to the hotel and waiting on April to arrive, I rested up some, but decided to go bother Brenda, I figured this may be the only chance to have "us" time with nobody else around and give us a chance to get to know one another better. We laid in the bed telling our secrets and laughing and had a great time talking. I was getting tired and knew April was about to be there so I went back to my room.
Wednesday, October 1st. At 10am we had a meeting with Chicago Greeters to get a tour of Chicago. This is a pretty cool thing Chicago offers, it's free and they give you a 2 to 4 hour tour of anything you want to see. You have to be a visitor, you cannot be a local, and it is given by a local who volunteers their time to tell you about their wonderful city and the many things it has to offer. We got a tour of the loop, saw some pretty cool stuff and enjoyed our day.
Later that day Brenda and I met up with Jessica, the photographer that snapped a few photos of us at the Rosebud back in March. She generously took our pictures for us t no charge. Like I said before, she has a heart of gold. Here are some pics she took.
Thursday October 2, 2014 consisted of going back to the hospital to have an EMG and NCV test. This is not a pleasant experience. The NCV consist of them sticking electrodes on you and zapping you with little shocks of electricity to see how quickly your nerves relay the message. The EMG is the same thing except they stick a tiny needle into your muscles. This test hurts, not too terribly bad, but enough to get you very agitated.
Once I left the hospital I was on my own. Brenda was about to have hers done, Donna was out doing her own thing and April stayed back in the hotel room to work. I decided to take this time to do some roaming around on my own and take some pictures.
After having my little chat with God, I went back to the hotel room to meet up with April and figure out what we were going to do about dinner. The winner that night for dinner, Jake Melnick's. Home of the best wings in Chicago.
Friday October 3, 2014
After the EMG and NCV test yesterday, I had to go back to see Dr. Allen to discuss the results and answer a bunch of questions regarding what I can and can't do on a scale of 1 to 5. I also had to get up out of a chair and walk to a point down the hallway and back and they timed me to see how fast I was compared to last time. Significant difference for the better this time around. Dr. Allen told me that he could see great results with the EMG (muscles) and only a slight change on the NCV compared to last years results. He did explain though, it doesn't matter what the test results say, what matters most is how I fell and how I'm doing. I let him know I was feeling great and doing perfect. He was not as encouraging as Dr. Burt was. He told me I may not see anymore changes and that I may not get any better than I was at that point. I think maybe he didn't want me to get my hopes up, you know, use a little reverse psychology on me. That doesn't work with me. I know in my heart that I WILL get better, but I told him that even if I didn't, I was happy with my results now and anything beyond this would be a little bonus.
That evening me, April and Donna went back to Pippen's Irish pub for another hot dog and a drink before meeting up with Brenda and Donna's husband to go to the top of the Hancock tower for cocktails. We figured our last night there deserved a special treat and this was just the place. We found a spot right in the corner of the bar with great views of downtown Chicago all lit up.
I have no idea how I was able to get those two pictures to connect like that, but it looks pretty cool. That bottom picture is Donna, Me and Brenda. Oct. 3, 2014 Stem Cell Sisters for life.
Saturday October 4, 2014
Our last day in Chicago and it was cold. I believe it was around 42 outside and raining. April and I slept in, took our time getting ready and packed up. We had a lunch date with another HSCT patient, Scott Hucks. I didn't bring a coat with me because I didn't think it would get cold enough while we were there so, we stopped at the H&M store to do a little shopping, oh darn it, lol. I found a coat, a sweater and I was good to go. Off to meet Scott, his girlfriend Heather and his brother Luke. Can you guess where we met them? That's right, Jake Melnick's. This has become my all time favorite place in Chicago to go for good food and drinks.
You go Scott, kick MS to the curb.
Back home and back to daily life. The weeks and days passed and on October 24th I had to run down the driveway after my 2 year old granddaughter. Wait, what? Did you hear that? I RAN. It was by accident that I found out, but I did it.
My facebook post on October 25th: 2 1/2 years ago I acquired an autoimmune disease that made it impossible to run, heck even walking was hard. In March I had a stem cell transplant to restart my immune system and gave me a new one. Today at almost 8 months post transplant, here I am running. Not perfect, but way better than before the transplant. For those of you who wonder why I had the transplant or wonder if it was worth it, YOU BET. Watch and decide for yourself. Stem cell transplants work.
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