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.
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