The past two months have been full of a lot of thinking and questioning. It has been over half a year since I made one of the biggest decisions of my life, and I’m not the biggest fan of making decisions because I never want to make the wrong ones. Of course I do make the wrong decisions sometimes and every once in a while I wonder if having a lymph node transfer was one of the bad ones. I got to thinking, with all the new research going on with the lymph system and lymphedema in particular, “Did I jump into this whole thing way too fast?” and “Did I jeopardize the possibly of receiving a better treatment in the future by going through with the surgery, and will my next surgery further put me in jeopardy?” While I was asking myself these questions I started researching and ran across a couple pages by Stanford Medical which explained: they have been doing a lot of research on lymphedema and new treatment methods for it. I became very interested and even called to see if they had any openings and how much it would cost if my insurance didn’t cover a consultation with them (as we all know they probably wouldn’t have.) I thought that talking to doctors who knew a lot more about lymphedema would make me more comfortable with the decisions I have made and will make when it come to my health.
Having these thoughts made me question whether or not I should go through with the liposuction surgery I’m supposed to have at the end of the year, and as much as I hated it I was thinking that I was going to have to hold off on that until I felt comfortable that I wasn’t screwing myself over in the long run. Luckily, I was able to get an appointment with my surgeon while I was home for a week this summer. At that appointment I was able to discuss all my concerns and questions with her. I was even able to ask what she thought about going to Stanford. She was very understanding with me and said I should go if I felt like I needed to, but she also reassured me that if anything these surgeries would probably make me a better candidate for future lymphedema treatment methods. I came out of that appointment pleasantly surprised and happy which isn’t usually the case. After going over everything with my surgeon I felt peace with the whole situation. That was such a gift because it had been weighing on me for quite a while. I was also able to build a greater trust in my surgeon which I believe is so important in cases like this. My surgeon had never performed this surgery before and to my knowledge it had never been done by Kaiser Permanente before. That’s a scary thought, but because I was willing and to be honest a little desperate it is opening so many doors for my surgeon and for Kaiser as well. Kaiser is now starting to build a lymphedema team and my surgeon will be at the head of it. I’m so happy for her and for all the patients this will hopefully benefit. So to clarify, I will be going in sometime late December to have liposuction on my leg, and they will also be reducing the bump of tissue on my ankle just a little. My surgeon said I’ve already been through the hardest part, and this next procedure should be really easy. It’s an outpatient procedure so I won’t be stuck in the hospital on bedrest for three weeks again which is a huge step up! Other than all the doctors stuff I would just like to share an experience I had a couple weeks ago. Living with lymphedema can be hard not only because of the constant concern you need to have for the affected limb, but also because you know you look different than most people. I made a new friend and we were trying to plan a time to hang out. We texted back and forth and then he asked if I would like to go float the river with him and some friends. I saw the text and instantly thought of my leg. It was the first time that we were going to hang out, and he didn’t know about my leg. I debated in my head whether or not I should go telling myself, “I don’t want to let my leg hold me back from anything” but also thinking, “Maybe it’s not the best thing to do when first getting to know someone. I want to make a good impression.” Being in a swim suit in front of a group of people is a hard thing to do even without lymphedema because we as humans are great at pointing out our flaws. I feel that it is hard because I know people will ask questions: “Are you okay?” “What happened to your leg?” “Does it hurt?” or they will just stare… I don’t know which I like less. The point is, it can be hard but don’t let your imperfections control you. I’m still working on it. Also, be nice to the people staring and asking questions. You’d probably be curious too. |
AuthorHi, my name is Sydney, and I have Primary Lymphedema. I created this blog to share my journey, and I hope that by sharing my story I can help those who are on a similar path. Archives
April 2017
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