This post is delayed because I have been letting my thoughts simmer for a while. I had to really think about just how open and personal I wanted this post to be. I have decided that after writing so openly about my medical journey, that it would be unfair of me at this point to censor what has been going on with me both physically and emotionally.
My surgeon discharged me from the Wound Care Center on January 23, 2013. When he discharged me, I was happy that my wound was closed but also completely terrified that it would open again as it had previously. My visiting nurses continued to do weekly visits with me for approximately five weeks after discharge, to make sure that my wound didn’t open again. During that time I was still keeping the news of my discharge to myself. While a part of me was incredibly happy and wanted to shout it from the rooftops, another part of me was worried that if it opened again I along with my friends and family would be devastated and that was too much for me to think about.
During that time I was also regularly attending my boyfriend’s appointments at the wound care center so I was still incredibly submerged in wound care. My boyfriend was discharged from the wound care center on April 3, 2013 and since then his wound has remained closed. When we left his last appointment we figured that we could just get on with our lives again.
Unfortunately, getting back to our old lives would prove to be more difficult than I ever imagined it would be. My boyfriend seemed to adjust quickly, but that is probably because his wound didn’t have as great of an impact on his daily life. I however, have had more of a difficult time. First, I am incredibly paranoid about my wound reopening. No matter how many times my boyfriend and I check the area and see that it is still doing well, I cannot get the last time it opened out of my head, or the words that the surgeon said about its reopening could be related to osteo. Two weeks ago when my boyfriend was checking to see if the area was still doing well he told me that the wound was still closed but that something else had developed. I asked to see a picture so that I would know what he was talking about. What I saw was a hemorrhoid. On one hand, I was sort of grossed out by it but on the other hand, it was starting to put the pieces of the puzzle together. You may remember that I had previously seen a couple of streaks of blood after I have gotten off of the toilet but that my nurse had always said the wound was still closed. Suddenly, it seemed to me that the blood must have been coming from the hemorrhoid and that I had just assumed it was from the wound because that’s where my focus had been for so long. As ridiculous as it may seem, I was relieved to have a hemorrhoid.
My boyfriend was spending a few days with me last week and while we were having a discussion, without entirely thinking, I let it slip that I am really not transitioning very well at all. As much as my boyfriend is trying to understand, he is unable to put himself in my shoes. He said that he expects that I would be thrilled to not have to be stuck in my house any more. Logically, I get that he thinks that’s how I would feel but that really isn’t how I feel at all.
While, it is spectacular to be able to go out whenever I want to, it is also a really scary situation. I was basically stuck in my own house for the greater part of four years, unable to do much of anything. As such, it seems that I got used to being both inside and with being near only a handful of people at a time and also was very rarely by myself. Therefore, while he was here visiting, we had decided that we would be going out and doing things, partially, because it would be fun but also to try to get me out of my house. Due to his work schedule and my admittedly strange sleeping patterns he was more tired than either of us expected and so we did not really do anything for a couple of days. While we were discussing the fact that we had been stuck inside, I began to break down and try to explain that I was feeling like a prisoner in my own home and that it really stunk. As much as he tried to understand, he was unable to fully grasp what I was saying. He brought up the fact that nothing was stopping me from going out by myself and I did the best I could to explain to him that I had been with people for so long that being out of my house alone seemed daunting.
I find myself at this point wondering what I need to do to get myself out of this funk. It isn’t just that I am sick of being inside, which I absolutely am but I am also finding myself completely overwhelmed by large crowds of people. I think that it is because I haven’t been exposed to crowds in such a long period of time and that I will eventually readjust but wow, readjusting is really hard. This feels somewhat like a case of depression.
I have experience dealing with depression because I had it as a child and teenager, yet this case feels different in some ways. Depression when I was a teenager felt like I did not want to do anything at all, and it didn’t matter what I had planned for the day. In this case, I feel more stuck. Like I want to go out and do things and have experiences yet I am unable to actually follow through with plans. Maybe these feelings are rooted more in fear, than depression?
Showing posts with label fear. Show all posts
Showing posts with label fear. Show all posts
Monday, May 13, 2013
Sunday, January 27, 2013
Uncertainty
“My one purpose in writing is simply to provide a catharsis for my own thoughts. They worry me until they are set forth in words.” ---
H.L. Mencken
I usually only turn to this blog after I have the facts from my surgeon or one of my nurses. Today, however, is going to be a bit different. I have been going through a lot surrounding my wound and so today please allow me to use this to express my frustrations, fears, worry and joys.
Last week I had an appointment with my surgeon at the wound care center. Being that the previous week my surgeon had proclaimed my wound healed and my visiting nurses also seemed to agree I went into the appointment kind of feeling like I was going to be discharged, yet still sort of unsure about the situation. As a matter of fact, when I went in the nurse asked me if we had “sealed the deal”, in other words if my wound was closed. I told her that I thought so, I also told her about the communication that my nurse had received that caused me to be so incredibly cautiously optimistic the week before. The nurse understood why I had felt confused and when I told her the depth that was mentioned in the communication she told me that she was virtually positive that it was in fact an outdated communication, which I shouldn’t worry about.
When my surgeon came in and examined my wound he also said that it was closed and I was done, I was marginally more excited than I had been the previous week but was not anywhere near feeling the joy I felt the first time my surgeon had discharged me. Before I left the nurse and surgeon took a picture of my wound to document that it was healed and also to show me what it looked like. I never got to actually see that picture though because we got talking about another pressing topic that was taking over my life.
Several months ago I discovered that my boyfriend had a wound on his lower leg. He being a typical guy minimized it and was not at all concerned. I was worried though so I tried to encourage him to get it checked out if not by a doctor, at least by my visiting nurse. He refused and because I did not want to nag him I let the subject drop but only temporarily. Eventually, he agreed to let my visiting nurse take a look at it, he said it was because I was genuinely concerned but I personally think he just wanted me off his case. My visiting nurse, with me also being her eyes was sort of treating his wound off the record for a couple of months and then it healed.
Unfortunately, his wound did not stay closed. My boyfriend asked me if my visiting nurse would be able to take a look at it again, because this time it was draining. My boyfriend’s schedule however, did not mesh with when she was coming over so last week when he was with me; I offered to look at it. He allowed me to do that and once I did, I almost immediately said that it needed to be seen. I also recovered the wound, using calcium alginate to absorb some of the drainage and then covered that with a Tegaderm foam adhesive dressing. I then asked my boyfriend if he wanted me to call the wound care center to ask if he could be seen, ideally while we were both there later that day for my appointment. They were unable to fit him in that day but could schedule him for a week later.
All of this was on my mind during my appointment, so some of the time we were talking about my boyfriend’s wound and what I had done after I had seen it that morning. I explained what I had seen and then how I had covered it again. The nurse seemed to think that what I had done sounded like the right thing to do until the surgeon could see it. I then halfway jokingly asked her if she would kindly get some of this information out of my head, that I could not stop thinking. She chuckled and said no.
My boyfriend and I left the wound care center and as we were leaving I told him that I had been discharged but that this time I was really not going to tell anyone other then him at least until my wound stayed closed for awhile. I had decided this because I will never forget the shattered look on my parents’ faces when I had to tell them that it had reopened after seven weeks of being fine. When we got to my house I asked my boyfriend if he would take a picture so that I could see being that I never got around to seeing the one from the wound care center. I saw the picture and although I was still only cautiously optimistic I was happy to see it closed. A few hours later my visiting nurse returned my phone call and I told her that my surgeon said I was done but that they couldn’t get rid of me that easily because I was going to go back the next week with my boyfriend. My nurse was thrilled to hear about me but was disappointed to hear that my boyfriend’s wound had opened up again. She then told me that getting it seen was a good idea, not so much because of the drainage but because their could be an underlying cause of the wound. That was precisely my thinking also.
Two days later my visiting nurse came to my house and she was so incredibly happy to hear that my wound had closed that as soon as she walked into my room she turned on the music that was on her iPhone. She had decided that this visit was going to be a fun one. I was okay with that but also told her that I am trying to temper my joy with some realistic expectations, purely because I had become so devastated when it had opened. When she looked at the wound she also said that it was closed and then took a picture so that I could see it. The picture that she showed me was different from the one my boyfriend had taken just two days earlier. I calmly asked her what the darker part was and that it looked open to me. She said that a tiny part of it was open but that it had absolutely no depth at all and was not draining so she was still calling it healed and even decided not to cover it. When she left my brain started spinning. I was upset that it looked different in just two days and had no idea what to think about her not covering it again.
I did not have any drainage that I noticed for the rest of that day so I was sort of hoping that my nurse was right and that I was needlessly being paranoid. I spent the majority of the day in bed, this time because I had come down with a cold.
The day after that was when I began to get a really weird feeling that my wound had opened even more and was potentially draining again. I did not feel anything at that point so I tried to convince myself that my mind was playing tricks on me and that I needed to relax, especially because my cold was really making me feel crummy. I lounged in bed and when I wasn’t sleeping I was trying to zone out to the television. The thing that did pop into my head periodically was my boyfriend’s wound. His appointment at the wound care center was four days away and I was interested to know what it was going to be like to be on the other side of a wound care situation. That evening when I got out of bed I noticed something that may have been drainage coming from my wound, I was a little nervous but did not do anything about it. Again, my mind had been playing tricks on me and I was trying to convince myself that while I had the right to be concerned after all I had been through, I should also try to think positively.
Thinking positively is apparently not something I am very good at doing though, especially when I am stressed. That night, while having dinner my mother said something really funny and I started laughing so hard that my eyes started watering. Once that happened though the tears brought on by laughter turned to tears of stress due to being unsure about my wound and being concerned about my boyfriend’s wound. Of course my parents have no idea that any of this is going on so I was crying with a goofy grin on my face. It wasn’t that big of a deal but it did make me feel like a fool. Here I was having dinner with my parents; one minute laughing at my mother and the next minute crying about the uncertainty that was happening in my life. I am pretty sure that I will have a visiting nurse at some point tomorrow who will hopefully be able to tell me if what I noticed was actually drainage or if I really do just need to calm down.
H.L. Mencken
I usually only turn to this blog after I have the facts from my surgeon or one of my nurses. Today, however, is going to be a bit different. I have been going through a lot surrounding my wound and so today please allow me to use this to express my frustrations, fears, worry and joys.
Last week I had an appointment with my surgeon at the wound care center. Being that the previous week my surgeon had proclaimed my wound healed and my visiting nurses also seemed to agree I went into the appointment kind of feeling like I was going to be discharged, yet still sort of unsure about the situation. As a matter of fact, when I went in the nurse asked me if we had “sealed the deal”, in other words if my wound was closed. I told her that I thought so, I also told her about the communication that my nurse had received that caused me to be so incredibly cautiously optimistic the week before. The nurse understood why I had felt confused and when I told her the depth that was mentioned in the communication she told me that she was virtually positive that it was in fact an outdated communication, which I shouldn’t worry about.
When my surgeon came in and examined my wound he also said that it was closed and I was done, I was marginally more excited than I had been the previous week but was not anywhere near feeling the joy I felt the first time my surgeon had discharged me. Before I left the nurse and surgeon took a picture of my wound to document that it was healed and also to show me what it looked like. I never got to actually see that picture though because we got talking about another pressing topic that was taking over my life.
Several months ago I discovered that my boyfriend had a wound on his lower leg. He being a typical guy minimized it and was not at all concerned. I was worried though so I tried to encourage him to get it checked out if not by a doctor, at least by my visiting nurse. He refused and because I did not want to nag him I let the subject drop but only temporarily. Eventually, he agreed to let my visiting nurse take a look at it, he said it was because I was genuinely concerned but I personally think he just wanted me off his case. My visiting nurse, with me also being her eyes was sort of treating his wound off the record for a couple of months and then it healed.
Unfortunately, his wound did not stay closed. My boyfriend asked me if my visiting nurse would be able to take a look at it again, because this time it was draining. My boyfriend’s schedule however, did not mesh with when she was coming over so last week when he was with me; I offered to look at it. He allowed me to do that and once I did, I almost immediately said that it needed to be seen. I also recovered the wound, using calcium alginate to absorb some of the drainage and then covered that with a Tegaderm foam adhesive dressing. I then asked my boyfriend if he wanted me to call the wound care center to ask if he could be seen, ideally while we were both there later that day for my appointment. They were unable to fit him in that day but could schedule him for a week later.
All of this was on my mind during my appointment, so some of the time we were talking about my boyfriend’s wound and what I had done after I had seen it that morning. I explained what I had seen and then how I had covered it again. The nurse seemed to think that what I had done sounded like the right thing to do until the surgeon could see it. I then halfway jokingly asked her if she would kindly get some of this information out of my head, that I could not stop thinking. She chuckled and said no.
My boyfriend and I left the wound care center and as we were leaving I told him that I had been discharged but that this time I was really not going to tell anyone other then him at least until my wound stayed closed for awhile. I had decided this because I will never forget the shattered look on my parents’ faces when I had to tell them that it had reopened after seven weeks of being fine. When we got to my house I asked my boyfriend if he would take a picture so that I could see being that I never got around to seeing the one from the wound care center. I saw the picture and although I was still only cautiously optimistic I was happy to see it closed. A few hours later my visiting nurse returned my phone call and I told her that my surgeon said I was done but that they couldn’t get rid of me that easily because I was going to go back the next week with my boyfriend. My nurse was thrilled to hear about me but was disappointed to hear that my boyfriend’s wound had opened up again. She then told me that getting it seen was a good idea, not so much because of the drainage but because their could be an underlying cause of the wound. That was precisely my thinking also.
Two days later my visiting nurse came to my house and she was so incredibly happy to hear that my wound had closed that as soon as she walked into my room she turned on the music that was on her iPhone. She had decided that this visit was going to be a fun one. I was okay with that but also told her that I am trying to temper my joy with some realistic expectations, purely because I had become so devastated when it had opened. When she looked at the wound she also said that it was closed and then took a picture so that I could see it. The picture that she showed me was different from the one my boyfriend had taken just two days earlier. I calmly asked her what the darker part was and that it looked open to me. She said that a tiny part of it was open but that it had absolutely no depth at all and was not draining so she was still calling it healed and even decided not to cover it. When she left my brain started spinning. I was upset that it looked different in just two days and had no idea what to think about her not covering it again.
I did not have any drainage that I noticed for the rest of that day so I was sort of hoping that my nurse was right and that I was needlessly being paranoid. I spent the majority of the day in bed, this time because I had come down with a cold.
The day after that was when I began to get a really weird feeling that my wound had opened even more and was potentially draining again. I did not feel anything at that point so I tried to convince myself that my mind was playing tricks on me and that I needed to relax, especially because my cold was really making me feel crummy. I lounged in bed and when I wasn’t sleeping I was trying to zone out to the television. The thing that did pop into my head periodically was my boyfriend’s wound. His appointment at the wound care center was four days away and I was interested to know what it was going to be like to be on the other side of a wound care situation. That evening when I got out of bed I noticed something that may have been drainage coming from my wound, I was a little nervous but did not do anything about it. Again, my mind had been playing tricks on me and I was trying to convince myself that while I had the right to be concerned after all I had been through, I should also try to think positively.
Thinking positively is apparently not something I am very good at doing though, especially when I am stressed. That night, while having dinner my mother said something really funny and I started laughing so hard that my eyes started watering. Once that happened though the tears brought on by laughter turned to tears of stress due to being unsure about my wound and being concerned about my boyfriend’s wound. Of course my parents have no idea that any of this is going on so I was crying with a goofy grin on my face. It wasn’t that big of a deal but it did make me feel like a fool. Here I was having dinner with my parents; one minute laughing at my mother and the next minute crying about the uncertainty that was happening in my life. I am pretty sure that I will have a visiting nurse at some point tomorrow who will hopefully be able to tell me if what I noticed was actually drainage or if I really do just need to calm down.
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