I have spent approximately the last week pondering the steps I will need to take in order to help resolve some of the medical issues that I am experiencing. Several weeks ago, my boyfriend gave me the email address of his urologist and suggested that I get in touch with him and ask for his thoughts. My therapist echoed his suggestions and still the contact information only sat inside of my wallet. During the time that the contact information for my boyfriend’s urologist was “gathering dust” I was somewhat focused on the issue with my toe.
I went to the wound care center last week so that the problem with my toe could both be diagnosed and then hopefully a treatment plan would be decided upon. When I got to the wound care center, I told my surgeon what had happened and after examining my toe, he told me that I had a subungual (under the nail) hematoma. I told him that I was experiencing some throbbing with it suddenly, and that my discomfort was what prompted me to get it looked at. He said that he was going to remove the toenail to relieve some of the pressure. He then asked the nurse that was with us to get him the supplies he would need. Of course, I was not entirely thrilled with having my toenail removed but I figured that it was going to ultimately make me feel better.
When the supplies were brought in, after asking about my sensation, my surgeon started poking around the sides of my toenail and cleaning it up a little. When he got to one spot I said that it hurt. My surgeon then questioned where exactly my pain was and I pointed it out. That is when his plan changed and he said that he was going to leave the nail in place. I said something at that point along the lines of, “you are”? He said that yes he was going to leave it and that it was actually better to leave it anyway. I asked him how long he thought it would take for it to grow out and he said that it would probably take about a month. When I asked him what I should do about the discomfort, he told me that I should deal with it if I could. I left the appointment with no plans to follow-up and thinking that eventually it would heal.
A couple of hours later, my boyfriend and I were out having lunch and I found myself sinking into an emotional funk. I have a tendency to over-think things and sometimes my thoughts make a minor issue snowball. I told my boyfriend a little of what had gone on during the appointment and that I was confused because the surgeon changed his mind. My boyfriend did agree that it sounded a little odd to him to but that I could just wait the month and if things with my toe hadn’t improved then I could call and ask for another suggestion.
The next day I had an appointment with my therapist and filled her in on everything. Again, she suggested emailing my boyfriend’s urologist and explaining to him what was going on as far as my kidney pain is concerned and that I was emailing him in hopes that I would be able to draw on his experiences in treating patients with disabilities. I told her that it sounded like a wise decision and somewhat agreed to email him soon. I also told my therapist what had gone on the previous day at the wound care center. I told her that instead of leaving the appointment with a plan I left feeling even more unease than I had when I first arrived. I explained to her that in my experience with my wound care surgeon, he had rarely if ever changed his plan in the middle of actually doing something, as he had during my appointment. I also said that it seemed a little odd that he originally was going to remove my nail but then when he changed his mind about that he said it was better to leave it alone. My thought was, if it was better to leave it alone then why was his first instinct to remove it. My therapist agreed that it was a valid question. Being that I failed to question any of this during my appointment at the wound care center, she encouraged me to either call or email my wound care surgeon to just ask him if he would let me in on his thought process. I questioned if she thought I should get in touch with my surgeon immediately or if she thought I should wait the month and see how my toe was doing and get in touch only if the plan didn’t work. My therapist told me that in her opinion I could email him that day or the next day or really, “whenever, I felt like I wanted to feel better about things”.
A few days ago I got up the courage to email my boyfriend’s urologist. After giving him a condensed version of my story, and explaining that I had seen a second opinion that gave the suggestion that my pain was lingering due to my disability, I asked if he could give any thoughts on what was going on. I was surprised to get an email back within twenty minutes. He thinks that I just need to see an urologist that will pay more attention to what is going on and offered recommend one. Unfortunately, the doctor he was planning to recommend is approximately two hours away from my home. I responded, thanking him for offering to give me the name of someone and that I would take the information. I also, asked if he knew of someone that would be a little more convenient for me to get to.
I have not heard back from my boyfriend’s urologist regarding any recommendations but I am hopeful that I will hear something soon. I have not however emailed my wound care surgeon to inquire about his thought process yet. Part of my hesitation is possibly because of the intense trust I have in him and part of it is because I tend to shy away from confrontation, especially with people that I have great respect for. I realize, that asking to be let into his thought process is not confrontational; it is just that I have never really questioned his judgment before. I guess, I will need to think about things farther to decide how I want to proceed in both of these areas.
Tuesday, July 15, 2014
Wednesday, July 9, 2014
If It Isn’t One Thing, It’s Another
My follow-up appointment at the wound care center was three weeks ago. When I was there, my surgeon asked me how I thought my wound was doing. I explained that I had seen a picture of it the previous evening and I thought it was doing well and that it was potentially finished. When my surgeon examined the wound he didn’t say all that much about it, he did however, apply Silver Nitrate to a section of it. I did not ask why he did that; I can only assume that he did it to give it a bit more strength. He told me that he wasn’t going to ask me to make another follow-up appointment with him but that if I felt that it wasn’t “perfect” in about three weeks I should come back in and have it checked.
I also had an appointment with a new urologist a few weeks ago. The majority of the appointment consisted of me filling him in on everything that had gone on with me in the past few months and why I was seeking his opinion. I explained that I am still currently experiencing what I think is kidney pain and that my prior physician had brushed my complaint off as just a sore muscle. I told the new urologist that I had been treating it like a sore muscle but that I really didn’t feel that it was muscular because icing it and taking pain medication was not working. I also explained that the pain seems to change with my urination so to me it was signaling a kidney problem.
The new urologist listened to my complaint and then asked me to show him exactly where my pain was. Once I did that he said that it does sound like kidney pain and that he had a couple of ideas why I was still uncomfortable. He said that while it is possible that the remaining fragment of the stone is causing me pain, based on its size and the location of it he said it is highly unlikely. He said that in his opinion my pain might be lingering because of my disability. A patient without my issues may experience discomfort for a few weeks after a similar ordeal but, in me, it may take months for it to dissipate. The urologist said that he has not seen many patients with my particular disability so he cannot say absolutely that is what is going on, only that it is something to think about. His final and in his opinion most probable cause for my pain was that I had developed a mild urinary tract infection (UTI). I said it sounded possible but in my opinion it wasn’t likely because my system was not behaving the way it typically does when I have a UTI, although I did agree to drop off a urine specimen at the lab so we could test for one. A couple of days later I received a call from the urologist’s office saying that an infection was found and that an antibiotic had been ordered. I took the medication for the prescribed time period, kind of hoping that the UTI was what was causing my pain and that it would all be resolved with the antibiotic. Unfortunately, the medication has not made me feel any better.
I have another appointment with the urologist in about a month so that we can re-assess the remaining stone fragment to determine if it has moved or changed in size. I have discussed all of this with my therapist and she thinks that he may have a point about my disability slowing my recovery process. She has suggested that I consult other urologists that may have a wider patient pool of disabled patients who may be able to tell me if that is possible. I have taken my therapists advice and have started asking around among some friends to see if any of their urologists may be able to shed some light on my situation.
Although my wound care surgeon had said that he did not need to see me if I didn’t feel that my wound was doing poorly, they cannot get rid of me that easily. I have an appointment at the wound care center tomorrow for an unrelated matter. It was approximately a month ago that I banged my foot on my bed frame. Of course it hurt when I banged it but the pain didn’t last very long. I noticed something on my big toe shortly after I bumped it, in my opinion I had a hematoma under the nail. It was not a pretty sight but I wasn’t in pain and I know that sometimes these things just grow out and resolve themselves; so my plan was to wait for it to heal, while monitoring it. After a few weeks the nail grew thicker at the tip and grew out and fell off. However, the remaining part of the nail was still over the spot that I feel is a hematoma. I figured I just needed to continue being patient. Suddenly, a couple of days ago, I noticed that my toe was throbbing. I thought about it and I could not remember doing anything to it that would have potentially re-injured it and it didn’t look any different. Being that the pain was a new symptom, I decided it was time to make a phone call and ask about having it looked at. I called the wound care center to ask if the surgeon I had seen for my wound was able to see it or if they thought that I needed to be seen by a podiatrist. Ordinarily, my primary doctor would probably have been who I would have called first but I have such a comfort level and a trust with everyone at the wound care center that I knew any advice they would give me was going to be good. I ended up texting with the nurse that I had seen most often and speaking on the phone with the receptionist. I was told that I could come in tomorrow and have it looked at by my wound care surgeon. I am interested to hear his thoughts on the situation and what may have to be done so that the uncomfortable throbbing will go away.
I also had an appointment with a new urologist a few weeks ago. The majority of the appointment consisted of me filling him in on everything that had gone on with me in the past few months and why I was seeking his opinion. I explained that I am still currently experiencing what I think is kidney pain and that my prior physician had brushed my complaint off as just a sore muscle. I told the new urologist that I had been treating it like a sore muscle but that I really didn’t feel that it was muscular because icing it and taking pain medication was not working. I also explained that the pain seems to change with my urination so to me it was signaling a kidney problem.
The new urologist listened to my complaint and then asked me to show him exactly where my pain was. Once I did that he said that it does sound like kidney pain and that he had a couple of ideas why I was still uncomfortable. He said that while it is possible that the remaining fragment of the stone is causing me pain, based on its size and the location of it he said it is highly unlikely. He said that in his opinion my pain might be lingering because of my disability. A patient without my issues may experience discomfort for a few weeks after a similar ordeal but, in me, it may take months for it to dissipate. The urologist said that he has not seen many patients with my particular disability so he cannot say absolutely that is what is going on, only that it is something to think about. His final and in his opinion most probable cause for my pain was that I had developed a mild urinary tract infection (UTI). I said it sounded possible but in my opinion it wasn’t likely because my system was not behaving the way it typically does when I have a UTI, although I did agree to drop off a urine specimen at the lab so we could test for one. A couple of days later I received a call from the urologist’s office saying that an infection was found and that an antibiotic had been ordered. I took the medication for the prescribed time period, kind of hoping that the UTI was what was causing my pain and that it would all be resolved with the antibiotic. Unfortunately, the medication has not made me feel any better.
I have another appointment with the urologist in about a month so that we can re-assess the remaining stone fragment to determine if it has moved or changed in size. I have discussed all of this with my therapist and she thinks that he may have a point about my disability slowing my recovery process. She has suggested that I consult other urologists that may have a wider patient pool of disabled patients who may be able to tell me if that is possible. I have taken my therapists advice and have started asking around among some friends to see if any of their urologists may be able to shed some light on my situation.
Although my wound care surgeon had said that he did not need to see me if I didn’t feel that my wound was doing poorly, they cannot get rid of me that easily. I have an appointment at the wound care center tomorrow for an unrelated matter. It was approximately a month ago that I banged my foot on my bed frame. Of course it hurt when I banged it but the pain didn’t last very long. I noticed something on my big toe shortly after I bumped it, in my opinion I had a hematoma under the nail. It was not a pretty sight but I wasn’t in pain and I know that sometimes these things just grow out and resolve themselves; so my plan was to wait for it to heal, while monitoring it. After a few weeks the nail grew thicker at the tip and grew out and fell off. However, the remaining part of the nail was still over the spot that I feel is a hematoma. I figured I just needed to continue being patient. Suddenly, a couple of days ago, I noticed that my toe was throbbing. I thought about it and I could not remember doing anything to it that would have potentially re-injured it and it didn’t look any different. Being that the pain was a new symptom, I decided it was time to make a phone call and ask about having it looked at. I called the wound care center to ask if the surgeon I had seen for my wound was able to see it or if they thought that I needed to be seen by a podiatrist. Ordinarily, my primary doctor would probably have been who I would have called first but I have such a comfort level and a trust with everyone at the wound care center that I knew any advice they would give me was going to be good. I ended up texting with the nurse that I had seen most often and speaking on the phone with the receptionist. I was told that I could come in tomorrow and have it looked at by my wound care surgeon. I am interested to hear his thoughts on the situation and what may have to be done so that the uncomfortable throbbing will go away.
Friday, May 30, 2014
Taking Control, Becoming Empowered
I had an appointment with the urologist a couple of days ago so that we could discuss the results of the Urodynamics Study. I went into the appointment with sort of a wall up because I already had lost all trust in this physician. I intended to listen to what he had to say but I also had previously made an appointment with a different urologist so that I could get another opinion. Therefore, in a way I felt like what he had to say wouldn’t really make a difference in the long run but that it may give me something to go on when I met with the new urologist.
The urologist told me that the ultrasound did show a small fragment of stone remaining but that it was not obstructive and as such was not the cause of my discomfort. He also said that my urodynamics study was surprisingly normal and so nothing was really wrong. He said the fact that I am not on any medication, though odd for someone with a neural tube defect; seemed to be fine for my body. I then questioned why I was still having back pain, in the same place that to me has always signaled a kidney problem. The urologist said that my kidney is fine and so my pain is probably due to a sore muscle. He suggested that I begin icing it and taking over the counter painkillers, as I would for any other type of muscle strain or spasm. I told the urologist that I really don’t feel like it is a muscle problem but that I would give his suggestions a try because it couldn’t hurt.
Before I left, I told him that I did want to give him some feedback about something that had happened awhile back that I did not have the courage to speak up about at the time. I told him that in the future he might want to avoid making assumptions about what a patient may or may not feel, due to his or her disability. When I said that, he gave me a questioning look so I continued to say that I did in fact have sensation and that I did experience some discomfort when he removed the stent. He then questioned if it was only discomfort or if it was pain. I said that it was discomfort and that if I were in pain I absolutely would have said something right then. He continued to say that it would have been helpful if I had mentioned it at the time but that he understood why I didn’t feel like I could. While I had mustered up the courage to bring up his treatment of me, I did not feel comfortable explaining to him that I had set up an appointment with someone else for a second opinion. I left the appointment after scheduling a time to see him at the end of the summer, although I have no intentions of actually keeping that appointment.
The next day I called the urologist’s office to request that my records be sent to another physician. That was when I met up with all of the HIPAA red tape that requires that these requests be sent in writing. I temporarily panicked when I considered that a letter would need to go through the mail and that, in combination of the office staff needing to gather all of the needed documents might take more time than I had because my meeting with a new urologist was rapidly approaching. Once I calmed down and took a moment to consider my options I realized it wasn’t such a big deal because I could fax over my request. I quickly drafted a letter requesting my records be sent to another doctor and provided them with his contact information. I followed up my request with a phone call to make sure that the Fax was received and that it provided all of the necessary information they needed. The person on the phone said the fax was fine and that getting the records to the other doctor prior to my appointment shouldn’t be a problem.
Currently, I am still experiencing back/kidney pain. I am treating it as the urologist has recommended, though I seriously doubt that it is muscular. My feeling is that if it were muscular, painkillers would at least lessen my discomfort. I also think it is my kidney because the pain level increases right before I urinate and then lessens afterward. My appointment with a new urologist is in a couple of weeks and hopefully he will have some ideas as to the cause and possible treatment of my pain.
My discomfort with the urologist was so based on his moodiness that I feel that the only benefit I gained from seeing him was his surgical skills to remove my kidney stone. He seemed to have a completely different persona in the office than he did at the hospital. I did not appreciate his assumptions based on his views of my disability or how he spoke to me on a couple of occasions. This experience has given me more evidence to trust my gut in the future and that I as the person living in this body know what I am feeling better than anyone else. As such I have a responsibility to myself to seek out answers. I have also realized that I really should speak up if I do not feel like things are being handled appropriately. I spoke up on the last visit with that urologist in part because I knew that I was not going to be seeing him again so I didn’t particularly care about hurting his feelings or about how what I had to say may effect me further down the road. I felt like I needed to be heard not just for myself but also because of the possibility that what I said will stick with him and help prevent a future patient from having assumptions made about them.
The urologist told me that the ultrasound did show a small fragment of stone remaining but that it was not obstructive and as such was not the cause of my discomfort. He also said that my urodynamics study was surprisingly normal and so nothing was really wrong. He said the fact that I am not on any medication, though odd for someone with a neural tube defect; seemed to be fine for my body. I then questioned why I was still having back pain, in the same place that to me has always signaled a kidney problem. The urologist said that my kidney is fine and so my pain is probably due to a sore muscle. He suggested that I begin icing it and taking over the counter painkillers, as I would for any other type of muscle strain or spasm. I told the urologist that I really don’t feel like it is a muscle problem but that I would give his suggestions a try because it couldn’t hurt.
Before I left, I told him that I did want to give him some feedback about something that had happened awhile back that I did not have the courage to speak up about at the time. I told him that in the future he might want to avoid making assumptions about what a patient may or may not feel, due to his or her disability. When I said that, he gave me a questioning look so I continued to say that I did in fact have sensation and that I did experience some discomfort when he removed the stent. He then questioned if it was only discomfort or if it was pain. I said that it was discomfort and that if I were in pain I absolutely would have said something right then. He continued to say that it would have been helpful if I had mentioned it at the time but that he understood why I didn’t feel like I could. While I had mustered up the courage to bring up his treatment of me, I did not feel comfortable explaining to him that I had set up an appointment with someone else for a second opinion. I left the appointment after scheduling a time to see him at the end of the summer, although I have no intentions of actually keeping that appointment.
The next day I called the urologist’s office to request that my records be sent to another physician. That was when I met up with all of the HIPAA red tape that requires that these requests be sent in writing. I temporarily panicked when I considered that a letter would need to go through the mail and that, in combination of the office staff needing to gather all of the needed documents might take more time than I had because my meeting with a new urologist was rapidly approaching. Once I calmed down and took a moment to consider my options I realized it wasn’t such a big deal because I could fax over my request. I quickly drafted a letter requesting my records be sent to another doctor and provided them with his contact information. I followed up my request with a phone call to make sure that the Fax was received and that it provided all of the necessary information they needed. The person on the phone said the fax was fine and that getting the records to the other doctor prior to my appointment shouldn’t be a problem.
Currently, I am still experiencing back/kidney pain. I am treating it as the urologist has recommended, though I seriously doubt that it is muscular. My feeling is that if it were muscular, painkillers would at least lessen my discomfort. I also think it is my kidney because the pain level increases right before I urinate and then lessens afterward. My appointment with a new urologist is in a couple of weeks and hopefully he will have some ideas as to the cause and possible treatment of my pain.
My discomfort with the urologist was so based on his moodiness that I feel that the only benefit I gained from seeing him was his surgical skills to remove my kidney stone. He seemed to have a completely different persona in the office than he did at the hospital. I did not appreciate his assumptions based on his views of my disability or how he spoke to me on a couple of occasions. This experience has given me more evidence to trust my gut in the future and that I as the person living in this body know what I am feeling better than anyone else. As such I have a responsibility to myself to seek out answers. I have also realized that I really should speak up if I do not feel like things are being handled appropriately. I spoke up on the last visit with that urologist in part because I knew that I was not going to be seeing him again so I didn’t particularly care about hurting his feelings or about how what I had to say may effect me further down the road. I felt like I needed to be heard not just for myself but also because of the possibility that what I said will stick with him and help prevent a future patient from having assumptions made about them.
Wednesday, May 14, 2014
Urodynamics and a Wound Care Appointment
Last week, I had my urodynamics study. The study was to test my bladder function so that my urologist and I could best determine a baseline, which would help us decide what our next step toward getting me feeling better might be. The test didn’t take very long and wasn’t very uncomfortable. The basic process of the study consisted of emptying my bladder and then inserting fluid back into my bladder until I told the nurse that I was beginning to feel the urge to urinate. After that she asked me if I felt like I absolutely had to go then or if I could wait. I told her that I was able to wait so she inserted more fluid. After I felt like I could no longer wait she stopped the fluid and apparently watched my bladder on a monitor. We waited and for some reason nothing we did were helping me to empty my bladder despite the fact that I felt full. Eventually, she told me that she saw that my bladder was contracting but only a little bit but that if I were feeling the urge that intensely she would conclude the test. I was feeling like I could no longer wait so we unhooked me from the sensors and the nurse told me that I needed to set up an appointment with my urologist in a couple of weeks to go over the results. I left that appointment and made a beeline for my house where my bladder felt free to empty. Soon, it was time to go to the Wound Care Center for my appointment with my surgeon.
When I got to the Wound Care Center, I had the same nurse that I had seen the previous week and she asked me how I felt the wound was doing. I explained that I hadn’t been able to see it, so I had no definitive answer but I that I was experiencing some discomfort with it, although, nothing close to the pain I had when things had gone haywire in the past. When my surgeon walked in the room, I was relieved to see him but was also hoping that I wasn’t there wasting everyone’s time. He asked me what I had been doing to treat the area and I told him that the doctor from the previous week had recommended using Calazime and also the barrier skin prep and that I was following those instructions.
When he looked at the area he told me that it was closed and not anything to worry about but that I had done the right thing by coming in when I personally felt unsure. I did tell him that I am sometimes feeling a stinging sensation in the area and questioned that it was actually closed. He told me that it was closed and that he did not have a reason for why I may be experiencing the discomfort. He recommended continuing to use the Calazime and skin prep and asked me to come back in about a month so that he could see how it was doing then.
As of now, my plan is to see my urologist in a couple of weeks so that he can tell me the results of the Urodynamics study. I have decided though, that I will not see him past that appointment. I have received the name of an urologist from one of my former visiting nurses and I intend to call and make an appointment with him so that a solution may be found, hopefully with someone that I will have a better feeling about. I am continuing to treat my wound as my surgeon has recommended and I am planning to follow up with him in a few weeks. Hopefully, all of this will be resolved shortly so that I can move on with my life.
When I got to the Wound Care Center, I had the same nurse that I had seen the previous week and she asked me how I felt the wound was doing. I explained that I hadn’t been able to see it, so I had no definitive answer but I that I was experiencing some discomfort with it, although, nothing close to the pain I had when things had gone haywire in the past. When my surgeon walked in the room, I was relieved to see him but was also hoping that I wasn’t there wasting everyone’s time. He asked me what I had been doing to treat the area and I told him that the doctor from the previous week had recommended using Calazime and also the barrier skin prep and that I was following those instructions.
When he looked at the area he told me that it was closed and not anything to worry about but that I had done the right thing by coming in when I personally felt unsure. I did tell him that I am sometimes feeling a stinging sensation in the area and questioned that it was actually closed. He told me that it was closed and that he did not have a reason for why I may be experiencing the discomfort. He recommended continuing to use the Calazime and skin prep and asked me to come back in about a month so that he could see how it was doing then.
As of now, my plan is to see my urologist in a couple of weeks so that he can tell me the results of the Urodynamics study. I have decided though, that I will not see him past that appointment. I have received the name of an urologist from one of my former visiting nurses and I intend to call and make an appointment with him so that a solution may be found, hopefully with someone that I will have a better feeling about. I am continuing to treat my wound as my surgeon has recommended and I am planning to follow up with him in a few weeks. Hopefully, all of this will be resolved shortly so that I can move on with my life.
Monday, May 5, 2014
A Week of Chaos
I spent last week trying to keep my thoughts positive and not worry too much about everything that was going on with me medically. As I was leaving the radiology office after my ultrasound I requested that the reports be mailed to me. The office said that they would be sure to send them.
A few days later, the urologist’s office called me. I had a temporary moment of panic when they called because I remembered that he said he would only call if anything had shown up. When I answered the phone it was a person from his office. I halfway expected her to transfer me to the doctor so he could speak with me directly, instead she told me that the results had come back normal and so I should come in a few weeks later for my scheduled urodynamics test. I thanked her and hung up the phone feeling confused. I wondered why I was being called when everything was supposedly fine when I had previously been told that I would not receive a call if everything were okay. I tried not to let it bother me and just focus on the fact that they had communicated with me and that communication is a good thing.
A little while later, my mother handed me my mail and in it was the report from the ultrasound and x-ray. I opened it somewhat expecting it to say every little thing that had been seen so that did not surprise me as much as I was disturbed to see that a “small, 4mm density’ which was most likely a small fragment of the kidney stone had been discovered. I understand that 4mm is very small but when I considered that my original kidney stone was 8mm I didn’t necessarily agree that something that was half the size of the original was actually being considered normal. At first I was ticked off because I felt that the urologist’s office had lied to me about the results. After I calmed down and thought about it more clearly; I don’t believe I was lied to as much as I was not given all of the information. I believe it would have been more appropriate for them to tell me they found a small fragment but that it was not causing any of my problems so they did not plan to do anything about it.
All of this communication and miscommunication is causing me inner turmoil. On one hand while I was somewhat confused as to why I was receiving a phone call I was glad that they did not seem to forget about me. I would much rather receive a phone call to tell me that everything is okay than to not receive one when I am expecting one. The fact that they neglected to give me all of the information has me still considering switching providers. It of course brings up issues of trust and my belief that they are making appropriate decisions. I am just hopeful that the remaining fragment does not affect the urodynamics study that I have scheduled in a couple of days. I am considering bringing all of this to the urologist’s attention when I am there but I am sometimes uncomfortable being confrontational. I will need to do a “gut check” before I go to my appointment to decide how I want to proceed.
Last week, was also my appointment at the wound care center to figure out what was potentially happening with my wound. When I got to the appointment I gave a nurse that I had never seen before a condensed version of the history of the wound and then told her what I had seen the previous week, which had lead to my making the appointment. After she took all of the information she then examined my wound but she did not say much about it. I got a feeling though, that it was because it was doing very well or that she couldn’t actually find it. I waited a couple minutes for the doctor to come in and then I explained to her what I had seen and that it scared me because one of the previous times that it opened I had seen her and it actually had depth and required care. She totally understood my concern. I showed her the picture of my wound that had lead to my appointment and she looked at the area. She then explained to me that it was not open but that the top layer of one section had come off, giving the impression that it was open. She correlated it to having a facial and when you leave your skin looks red because the top layer is sometimes removed. I was relieved that nothing was really wrong but I also felt like somewhat of an idiot for having come in for nothing. The doctor said that it wasn’t for nothing because I did not really know what had caused it. She then recommended that I use Calazime on the area to try to block out any moisture that may break down the skin, although she did not see any breakdown happening, so it was more preventative than for treatment. She also told me to make a follow up appointment with my wound care surgeon for the following week, when he was there just to see if what she had recommended was working.
I have that appointment in a few days, ironically the same day that I am scheduled to have the urodynamics study. I am hopeful that both of those appointments are informative yet uneventful.
A few days later, the urologist’s office called me. I had a temporary moment of panic when they called because I remembered that he said he would only call if anything had shown up. When I answered the phone it was a person from his office. I halfway expected her to transfer me to the doctor so he could speak with me directly, instead she told me that the results had come back normal and so I should come in a few weeks later for my scheduled urodynamics test. I thanked her and hung up the phone feeling confused. I wondered why I was being called when everything was supposedly fine when I had previously been told that I would not receive a call if everything were okay. I tried not to let it bother me and just focus on the fact that they had communicated with me and that communication is a good thing.
A little while later, my mother handed me my mail and in it was the report from the ultrasound and x-ray. I opened it somewhat expecting it to say every little thing that had been seen so that did not surprise me as much as I was disturbed to see that a “small, 4mm density’ which was most likely a small fragment of the kidney stone had been discovered. I understand that 4mm is very small but when I considered that my original kidney stone was 8mm I didn’t necessarily agree that something that was half the size of the original was actually being considered normal. At first I was ticked off because I felt that the urologist’s office had lied to me about the results. After I calmed down and thought about it more clearly; I don’t believe I was lied to as much as I was not given all of the information. I believe it would have been more appropriate for them to tell me they found a small fragment but that it was not causing any of my problems so they did not plan to do anything about it.
All of this communication and miscommunication is causing me inner turmoil. On one hand while I was somewhat confused as to why I was receiving a phone call I was glad that they did not seem to forget about me. I would much rather receive a phone call to tell me that everything is okay than to not receive one when I am expecting one. The fact that they neglected to give me all of the information has me still considering switching providers. It of course brings up issues of trust and my belief that they are making appropriate decisions. I am just hopeful that the remaining fragment does not affect the urodynamics study that I have scheduled in a couple of days. I am considering bringing all of this to the urologist’s attention when I am there but I am sometimes uncomfortable being confrontational. I will need to do a “gut check” before I go to my appointment to decide how I want to proceed.
Last week, was also my appointment at the wound care center to figure out what was potentially happening with my wound. When I got to the appointment I gave a nurse that I had never seen before a condensed version of the history of the wound and then told her what I had seen the previous week, which had lead to my making the appointment. After she took all of the information she then examined my wound but she did not say much about it. I got a feeling though, that it was because it was doing very well or that she couldn’t actually find it. I waited a couple minutes for the doctor to come in and then I explained to her what I had seen and that it scared me because one of the previous times that it opened I had seen her and it actually had depth and required care. She totally understood my concern. I showed her the picture of my wound that had lead to my appointment and she looked at the area. She then explained to me that it was not open but that the top layer of one section had come off, giving the impression that it was open. She correlated it to having a facial and when you leave your skin looks red because the top layer is sometimes removed. I was relieved that nothing was really wrong but I also felt like somewhat of an idiot for having come in for nothing. The doctor said that it wasn’t for nothing because I did not really know what had caused it. She then recommended that I use Calazime on the area to try to block out any moisture that may break down the skin, although she did not see any breakdown happening, so it was more preventative than for treatment. She also told me to make a follow up appointment with my wound care surgeon for the following week, when he was there just to see if what she had recommended was working.
I have that appointment in a few days, ironically the same day that I am scheduled to have the urodynamics study. I am hopeful that both of those appointments are informative yet uneventful.
Saturday, April 26, 2014
Turning Lessons into Action
January 23,2014 marked one year since I had been discharged from the wound care center. I felt that the one-year anniversary of my discharge was an appropriate time to make a visit to the wound care center to say hello and thank my surgeon. Of course, when I got there, my brain was not really connecting very well with my mouth so those words never really came out. In the months leading up to my one-year anniversary I had begun seeing a therapist to help me process my thoughts and to start to develop a plan for my future.
I was taking small steps but plans were beginning to form. The last few months I began to worry less about the wound re-opening. I felt that being that it had been fine for a full year I was pretty much home free. I was beginning to feel excitement for the future when I found myself in a situation that wound up being a test for my gut. In January, I found myself in my local hospital’s Emergency Room.
To make a very long story short I was very sick with a kidney stone and infection. Although, an urologist probably should have followed me, once I hit my late teenage years I was stubborn and for the most part stopped seeing doctors. So, when the emergency room physician asked if I have an urologist that I wanted called I said no. The doctors then called the urologist that they know works well with my primary care physician. When he saw my test results and examined me he said that he would do surgery to remove the kidney stone the following morning. At that point I was on pain medication and was probably a little “foggy” so I didn’t really object to delaying the surgery. Suddenly, late that night, the surgeon came in and told me he had changed plans and was bringing me to the O.R. right then.
I woke up from the surgery in the Intensive Care Unit where I was told that the surgeon was unable to remove the stone because he encountered pus and that I was in I.C.U because my blood pressure was very low, most likely caused by the infection. I asked what was going to happen about the stone because I knew it would have to be removed at some point. I also asked about the pus that was found and I felt that my father gave me the “G rated” version of what all had gone on. The next morning I was feeling a little better and just happened to notice the urologist in the hallway. He came in and told me how much pus he had encountered and that he had put in a stent so that the urine would be able to bypass the stone and that we would schedule the surgery for a few weeks later, once I had been on a round of antibiotics.
A couple of weeks after I was discharged from the hospital I went to the urologist’s office so that we could discuss my options for removing the stone. When I got there my opinion of the surgeon changed. Suddenly, his bedside manor left a lot to be desired. I was put off by it but chalked it up to his having a bad day and tried not to take it personally. We discussed my surgical options and I decided which option I wanted and he agreed that it was probably the right choice. Two days prior to the surgery the hospital called to ask all of the preregistration questions, that at this point I could probably answer in my sleep. Before hanging up with the hospital, I questioned that the surgery would in fact still happen on that day, even though a snowstorm had been forecast. I was told that the hospital takes the surgeon’s lead and that they rarely postpone due to weather. I was glad to hear that I was not going to be postponed because I was experiencing some discomfort and wanted the situation resolved as soon as possible. The day before the surgery I received a phone call from the urologist and he indicated that he believed that we should postpone the surgery for a few days due to the weather. I did not want to postpone the surgery so I did the best I could to advocate for myself. At that point the surgeon said that one of the reasons for possibly postponing was that a piece of equipment was coming from out of state and he did not think that it would arrive on time. I hesitantly agreed that postponing for a few days was an okay idea but that I did have one more question before he hung up. The reaction of the urologist was less than professional but I let it slide without calling him on it and just asked my question.
The surgery to remove the stone and replace the stent was uneventful and I was back at home relaxing by mid afternoon after making a post-op appointment with him to remove the stent. The day he removed the stent was when I had my second gut feeling that maybe he was not the right physician for me. He didn’t explain any part of the procedure for removing the stent and while it is relatively simple, I still feel that it should have been explained to me prior to his doing anything. In addition, he did not numb the area, based on his (incorrect) assumption that I wouldn’t feel anything. I regret not calling him on any of this but I was so blindsided by his actions that I didn’t have it in me to say anything.
During this time I had been continuing to see my therapist and had been telling her what had been going on and that my plan at this point was to look for another doctor while continuing to take his advice to do a few more tests. My thinking was that his thoughts sounded plausible and his ideas to get more testing all made sense to me so getting tests done with him was fine because I figured results could always get sent to another physician if I chose to go that route.
One of the tests that the urologist wanted was for me to get an ultrasound done of my bladder and kidney so we could see if anything was going on that would possibly explain why I am still experiencing pain weeks after the stent was removed. The ultrasound was a few days ago and I tried to ask questions during the test but the technician said that he was unable to discuss my results with me. I was frustrated by this especially when I glanced at the screen and saw what in my mind looked very similar to the kidney stone when I had seen one of my CT scans. The technician said that it was part of my intestine. I had a weird feeling that I was being fed a line but I didn’t feel comfortable pressing for more information. After the ultrasound I explained to my boyfriend what had happened during the test and that I just had this eerie feeling that I saw a kidney stone. He suggested I call the urologist and while I understand why he suggested that, I had been told that he would call me if anything I needed to know about showed up on the ultrasound. As we were going to my house, I began to get a horrible feeling in the pit of my stomach, that something with my wound was suddenly not right.
When we got back to my house my boyfriend, looked at the area and his reaction was less than positive. After I saw a picture of what he had seen, I began to get really scared. After over 15 months of having absolutely no problems whatsoever, my wound looked like it had opened again. I sat up and looked at my boyfriend and told him that I was scared, really scared. People that know me, know that scared is not a feeling I express very easily either. He grabbed me in a hug, said he understood and then suggested I call someone. At that point I had no idea who to call or what to do because I had heard that my amazing surgeon from the Wound Care Center had changed his schedule and so he wasn’t there as often. I did end up calling the wound care center, only to be told that my surgeon had been there the day before and that he wouldn’t be back for a couple of weeks. I was not comfortable with waiting that long so I asked if the other doctor that I had seen a few times was there any time soon and was able to schedule an appointment with her for next week.
We then had to hurry up to get me to my appointment with my therapist. As soon as I saw her I damn near lost my mind. I explained that I have fears about what may have shown up on the ultrasound and then I dropped the big news that my wound had opened again. She told me that I should try to remain positive and that we seem to have caught this at the very beginning before it had a chance to turn into anything catastrophic. She also suggested that I email or call my wound care surgeon because it may make me calm down. I expressed that while I did want his thoughts, I was hesitant to contact him because I felt it was potentially crossing a boundary. She told me that she really felt like it would be acceptable for me to contact him so I did shortly after I got home.
When I received an email back from him, I vomited before I even read it. I had been nauseous since my boyfriend had discovered that my wound had opened and I guess I had kept it together until that point because I felt like I had to. Once I received the email from my surgeon though I felt like someone that knew what he was talking about and that I trusted completely, was aware of it I could relax and didn’t have to hold it together anymore. Upon seeing a picture of the wound, my surgeon agreed that having it seen by the other doctor was a smart idea. He also agreed that to him it did look pretty superficial. I am trying to remain calm until I can be seen at the wound care center and until I hear from the urologist regarding my tests.
I was taking small steps but plans were beginning to form. The last few months I began to worry less about the wound re-opening. I felt that being that it had been fine for a full year I was pretty much home free. I was beginning to feel excitement for the future when I found myself in a situation that wound up being a test for my gut. In January, I found myself in my local hospital’s Emergency Room.
To make a very long story short I was very sick with a kidney stone and infection. Although, an urologist probably should have followed me, once I hit my late teenage years I was stubborn and for the most part stopped seeing doctors. So, when the emergency room physician asked if I have an urologist that I wanted called I said no. The doctors then called the urologist that they know works well with my primary care physician. When he saw my test results and examined me he said that he would do surgery to remove the kidney stone the following morning. At that point I was on pain medication and was probably a little “foggy” so I didn’t really object to delaying the surgery. Suddenly, late that night, the surgeon came in and told me he had changed plans and was bringing me to the O.R. right then.
I woke up from the surgery in the Intensive Care Unit where I was told that the surgeon was unable to remove the stone because he encountered pus and that I was in I.C.U because my blood pressure was very low, most likely caused by the infection. I asked what was going to happen about the stone because I knew it would have to be removed at some point. I also asked about the pus that was found and I felt that my father gave me the “G rated” version of what all had gone on. The next morning I was feeling a little better and just happened to notice the urologist in the hallway. He came in and told me how much pus he had encountered and that he had put in a stent so that the urine would be able to bypass the stone and that we would schedule the surgery for a few weeks later, once I had been on a round of antibiotics.
A couple of weeks after I was discharged from the hospital I went to the urologist’s office so that we could discuss my options for removing the stone. When I got there my opinion of the surgeon changed. Suddenly, his bedside manor left a lot to be desired. I was put off by it but chalked it up to his having a bad day and tried not to take it personally. We discussed my surgical options and I decided which option I wanted and he agreed that it was probably the right choice. Two days prior to the surgery the hospital called to ask all of the preregistration questions, that at this point I could probably answer in my sleep. Before hanging up with the hospital, I questioned that the surgery would in fact still happen on that day, even though a snowstorm had been forecast. I was told that the hospital takes the surgeon’s lead and that they rarely postpone due to weather. I was glad to hear that I was not going to be postponed because I was experiencing some discomfort and wanted the situation resolved as soon as possible. The day before the surgery I received a phone call from the urologist and he indicated that he believed that we should postpone the surgery for a few days due to the weather. I did not want to postpone the surgery so I did the best I could to advocate for myself. At that point the surgeon said that one of the reasons for possibly postponing was that a piece of equipment was coming from out of state and he did not think that it would arrive on time. I hesitantly agreed that postponing for a few days was an okay idea but that I did have one more question before he hung up. The reaction of the urologist was less than professional but I let it slide without calling him on it and just asked my question.
The surgery to remove the stone and replace the stent was uneventful and I was back at home relaxing by mid afternoon after making a post-op appointment with him to remove the stent. The day he removed the stent was when I had my second gut feeling that maybe he was not the right physician for me. He didn’t explain any part of the procedure for removing the stent and while it is relatively simple, I still feel that it should have been explained to me prior to his doing anything. In addition, he did not numb the area, based on his (incorrect) assumption that I wouldn’t feel anything. I regret not calling him on any of this but I was so blindsided by his actions that I didn’t have it in me to say anything.
During this time I had been continuing to see my therapist and had been telling her what had been going on and that my plan at this point was to look for another doctor while continuing to take his advice to do a few more tests. My thinking was that his thoughts sounded plausible and his ideas to get more testing all made sense to me so getting tests done with him was fine because I figured results could always get sent to another physician if I chose to go that route.
One of the tests that the urologist wanted was for me to get an ultrasound done of my bladder and kidney so we could see if anything was going on that would possibly explain why I am still experiencing pain weeks after the stent was removed. The ultrasound was a few days ago and I tried to ask questions during the test but the technician said that he was unable to discuss my results with me. I was frustrated by this especially when I glanced at the screen and saw what in my mind looked very similar to the kidney stone when I had seen one of my CT scans. The technician said that it was part of my intestine. I had a weird feeling that I was being fed a line but I didn’t feel comfortable pressing for more information. After the ultrasound I explained to my boyfriend what had happened during the test and that I just had this eerie feeling that I saw a kidney stone. He suggested I call the urologist and while I understand why he suggested that, I had been told that he would call me if anything I needed to know about showed up on the ultrasound. As we were going to my house, I began to get a horrible feeling in the pit of my stomach, that something with my wound was suddenly not right.
When we got back to my house my boyfriend, looked at the area and his reaction was less than positive. After I saw a picture of what he had seen, I began to get really scared. After over 15 months of having absolutely no problems whatsoever, my wound looked like it had opened again. I sat up and looked at my boyfriend and told him that I was scared, really scared. People that know me, know that scared is not a feeling I express very easily either. He grabbed me in a hug, said he understood and then suggested I call someone. At that point I had no idea who to call or what to do because I had heard that my amazing surgeon from the Wound Care Center had changed his schedule and so he wasn’t there as often. I did end up calling the wound care center, only to be told that my surgeon had been there the day before and that he wouldn’t be back for a couple of weeks. I was not comfortable with waiting that long so I asked if the other doctor that I had seen a few times was there any time soon and was able to schedule an appointment with her for next week.
We then had to hurry up to get me to my appointment with my therapist. As soon as I saw her I damn near lost my mind. I explained that I have fears about what may have shown up on the ultrasound and then I dropped the big news that my wound had opened again. She told me that I should try to remain positive and that we seem to have caught this at the very beginning before it had a chance to turn into anything catastrophic. She also suggested that I email or call my wound care surgeon because it may make me calm down. I expressed that while I did want his thoughts, I was hesitant to contact him because I felt it was potentially crossing a boundary. She told me that she really felt like it would be acceptable for me to contact him so I did shortly after I got home.
When I received an email back from him, I vomited before I even read it. I had been nauseous since my boyfriend had discovered that my wound had opened and I guess I had kept it together until that point because I felt like I had to. Once I received the email from my surgeon though I felt like someone that knew what he was talking about and that I trusted completely, was aware of it I could relax and didn’t have to hold it together anymore. Upon seeing a picture of the wound, my surgeon agreed that having it seen by the other doctor was a smart idea. He also agreed that to him it did look pretty superficial. I am trying to remain calm until I can be seen at the wound care center and until I hear from the urologist regarding my tests.
Wednesday, July 24, 2013
Six Months Since Discharge!
I know that I have not blogged in a very long time, I could not let today go by without blogging though. Why today? Because it has been exactly six months since I have been discharged from the wound care center. I feel like today is a good day to give an update, as a way to sort of mark the day.
These six months have been a period of great transition for me. When I was first discharged I remember being terrified to tell anyone that I was healed. As the weeks went by though, I realized that eventually people would need to know, so gradually I began to open up and told a handful of people. The people that I intentionally kept it from the longest were my parents. I kept it from them as a form of protecting them in case it was going to open again in any sort of catastrophic way. Also, I was probably subconsciously protecting myself from having to see people disappointed. Once the cat was out of the bag and everyone knew, it was a relief, I physically felt lighter. Finally, I would be able to move on, or so I thought.
The switch from patient to then being the person that was helping take care of my boyfriend’s wound was actually relatively easy. Aside from loving my boyfriend and genuinely wanting his wound to heal, I was absorbed in wound care because so much information about it had been floating around in my head for so long. Of course, I went to every doctor’s appointment with him, because he wanted me there but also because of the relationships that had developed with the doctors and nurses that work at the wound care center.
Shortly after my boyfriend had been discharged I began to realize just how much this whole journey really affected me. When this journey began, back in January of 2009 I was of course bummed out that I had for only the second time in my life developed a pressure ulcer. I was upset that I had let it happen in the first place, and then of course it was really upsetting that I was going to be stuck in bed for the duration of the healing process. The wound of January 2009 only lasted a month though so looking back it was really not that big of a deal. When the wound developed in April 2009 I was beyond devastated. I really felt like I had been doing everything I could to prevent one from happening so I was caught off guard. I feel like although I may not have been entirely aware of it at that time, I began to shut down when I was told I had one again. I continued to do everything my doctor and nurses told me to in order to get the wound to heal, to a certain extent. I didn’t listen to myself when I originally got a weird uneasy feeling upon meeting the doctor at the first wound care center that I was treated at. I don’t know why I ignored the feeling, except to say that it was probably because I had never had a really bad experience with a doctor. As a result of sticking with that physician for so long I was further isolated. I could not leave my bed to really do much of anything. As such, I was forced to accept help from other people, which admittedly is something that I have never been very good at. To me, this wound meant a loss of independence. I had to rely on family members to give me the majority of my meals in bed and also to take care of cleaning my room for me; two things that I am incredibly picky about. In addition, I was completely isolated from everything outside of my room, let alone of my house.
Eventually, when I got fed up with the first doctor, I got another opinion which then lead to my going to the wound care center a couple of towns away, where I had very good experiences. After a couple of appointments with my surgeon he said to me that he didn’t even think that my wound was a pressure ulcer in the first place. The surgeon said that he thought the wound developed from a pilonidal cyst. While, I was relieved to hear that the wound may not have been directly caused by anything I did, I was more than a little annoyed that I was only hearing about this after having dealt with it for more than two years. The research that I did independently, due to my own curiosity explained that if it had been properly diagnosed at the beginning the cyst could probably have just been removed, leaving me with a small wound that would, with proper care most likely close on its own.
I never really told anyone how I was feeling, and I’m not sure why I kept it to myself. Of course my close friends knew, without me having to say much but as far as talking to anyone that could help me process some of those feelings, I never said anything. Having to rely on others instead of myself was a huge adjustment but honestly, having to rely on myself, now, post discharge is even more daunting. I am better now than I was, say two or three months ago but sometimes I still catch myself feeling hurt if someone does something that I consider making a decision for me. For example, at the beginning of the summer my boyfriend, parents, a few family friends and myself were going to attend a town wide concert. The day before the concert my boyfriend got in touch with me to tell me that unbeknownst to me my father had sent him a text message telling him to buy ponchos for us because it was going to be raining the entire time we were at the concert. I was angry that my dad had gone ahead and sent that message because I didn’t feel like it was his place. My boyfriend and I are adults after all and I didn’t feel like it was my father’s decision what he and I wore to a concert. I didn’t feel like I had to words to express how I was feeling to my father directly so I didn’t say anything. Instead my boyfriend and I got our own raingear and I did my best to just let it go.
The concert in and of itself was a huge thing for me to go to. I must admit when we first arrived I was a little bothered by the amount of people. It has to have been because I had been so isolated for so long that being in a crowd was overwhelming at first. Once I was able to calm down and relax I did have a really good time. As my boyfriend and I were leaving, I decided that instead of getting a ride with my parents I wanted to push home. The concert was less than a mile away from my house and I know that I have pushed from there to my house before and I wanted to prove to myself that I could do it. I told my boyfriend that I didn’t want us to take a ride and he said that was okay with him.
Though it took longer than I would have wanted it to take, I made it. It took a whole lot of tears and some positive self-talk and some rather colorful language but I did it. At one point my parents pulled over and asked if we were sure we didn’t want a ride and I insisted we were fine. When we got to my house I looked absolutely horrible because I was tired, and wet and I had the brilliant idea to get my face painted at the concert which due to all the tears the paint had run and smudged and looked gross. At first my parents were really worried that something had happened but I explained to them that it was something I HAD to do and that they would never really be able to understand.
Later I was talking to my boyfriend and said to him that I did it and he reacted by saying, something like “yeah no kidding, it isn’t that far”. At first I was crushed that he responded in that way, until I talked to my best friend who explained to me that what he probably meant was that he knew I could do it so although he was happy for me, in his mind it was never in question that I COULD do it. Once she said that, I understood and realized that she was probably right. I kind of took the accomplishment of pushing home from the concert as a sign that I Really was going to be okay.
For awhile, that was enough to get me to begin to adjust to my life again but I still find myself unsure about my wound really being okay, and in trusting myself to make all of my own decisions, many of which had been taken away from me while I was bed bound. Approximately a month ago I really began to feel depressed. I let it go for a little while and then I decided it was absolutely time to reach out to someone who could maybe help me process everything. I called my regular doctor and explained to her a little bit of what was going on and how exactly I wasn’t coping. She gave me a few phone numbers of therapists she usually recommends, after getting in touch with one of them, who was not going to be an option for me I was discouraged. Here I had made what I felt like was a big step and asked for help and the first therapist I called was not going to be able to help. I am now pondering the other names she gave me and will hopefully come to a decision soon. In the meantime, being that I cannot turn my brain off, I have decided to try to learn a language. I don’t really know what possessed me to pick Latin, but I find myself with a textbook and workbook so it’s actually going to happen. That was a decision I made by myself!
**This post was so emotional that I’m not even posting it on the exact six month since discharge date (7/23/13) anymore. Oh well, writing it this way was cathartic. :)
These six months have been a period of great transition for me. When I was first discharged I remember being terrified to tell anyone that I was healed. As the weeks went by though, I realized that eventually people would need to know, so gradually I began to open up and told a handful of people. The people that I intentionally kept it from the longest were my parents. I kept it from them as a form of protecting them in case it was going to open again in any sort of catastrophic way. Also, I was probably subconsciously protecting myself from having to see people disappointed. Once the cat was out of the bag and everyone knew, it was a relief, I physically felt lighter. Finally, I would be able to move on, or so I thought.
The switch from patient to then being the person that was helping take care of my boyfriend’s wound was actually relatively easy. Aside from loving my boyfriend and genuinely wanting his wound to heal, I was absorbed in wound care because so much information about it had been floating around in my head for so long. Of course, I went to every doctor’s appointment with him, because he wanted me there but also because of the relationships that had developed with the doctors and nurses that work at the wound care center.
Shortly after my boyfriend had been discharged I began to realize just how much this whole journey really affected me. When this journey began, back in January of 2009 I was of course bummed out that I had for only the second time in my life developed a pressure ulcer. I was upset that I had let it happen in the first place, and then of course it was really upsetting that I was going to be stuck in bed for the duration of the healing process. The wound of January 2009 only lasted a month though so looking back it was really not that big of a deal. When the wound developed in April 2009 I was beyond devastated. I really felt like I had been doing everything I could to prevent one from happening so I was caught off guard. I feel like although I may not have been entirely aware of it at that time, I began to shut down when I was told I had one again. I continued to do everything my doctor and nurses told me to in order to get the wound to heal, to a certain extent. I didn’t listen to myself when I originally got a weird uneasy feeling upon meeting the doctor at the first wound care center that I was treated at. I don’t know why I ignored the feeling, except to say that it was probably because I had never had a really bad experience with a doctor. As a result of sticking with that physician for so long I was further isolated. I could not leave my bed to really do much of anything. As such, I was forced to accept help from other people, which admittedly is something that I have never been very good at. To me, this wound meant a loss of independence. I had to rely on family members to give me the majority of my meals in bed and also to take care of cleaning my room for me; two things that I am incredibly picky about. In addition, I was completely isolated from everything outside of my room, let alone of my house.
Eventually, when I got fed up with the first doctor, I got another opinion which then lead to my going to the wound care center a couple of towns away, where I had very good experiences. After a couple of appointments with my surgeon he said to me that he didn’t even think that my wound was a pressure ulcer in the first place. The surgeon said that he thought the wound developed from a pilonidal cyst. While, I was relieved to hear that the wound may not have been directly caused by anything I did, I was more than a little annoyed that I was only hearing about this after having dealt with it for more than two years. The research that I did independently, due to my own curiosity explained that if it had been properly diagnosed at the beginning the cyst could probably have just been removed, leaving me with a small wound that would, with proper care most likely close on its own.
I never really told anyone how I was feeling, and I’m not sure why I kept it to myself. Of course my close friends knew, without me having to say much but as far as talking to anyone that could help me process some of those feelings, I never said anything. Having to rely on others instead of myself was a huge adjustment but honestly, having to rely on myself, now, post discharge is even more daunting. I am better now than I was, say two or three months ago but sometimes I still catch myself feeling hurt if someone does something that I consider making a decision for me. For example, at the beginning of the summer my boyfriend, parents, a few family friends and myself were going to attend a town wide concert. The day before the concert my boyfriend got in touch with me to tell me that unbeknownst to me my father had sent him a text message telling him to buy ponchos for us because it was going to be raining the entire time we were at the concert. I was angry that my dad had gone ahead and sent that message because I didn’t feel like it was his place. My boyfriend and I are adults after all and I didn’t feel like it was my father’s decision what he and I wore to a concert. I didn’t feel like I had to words to express how I was feeling to my father directly so I didn’t say anything. Instead my boyfriend and I got our own raingear and I did my best to just let it go.
The concert in and of itself was a huge thing for me to go to. I must admit when we first arrived I was a little bothered by the amount of people. It has to have been because I had been so isolated for so long that being in a crowd was overwhelming at first. Once I was able to calm down and relax I did have a really good time. As my boyfriend and I were leaving, I decided that instead of getting a ride with my parents I wanted to push home. The concert was less than a mile away from my house and I know that I have pushed from there to my house before and I wanted to prove to myself that I could do it. I told my boyfriend that I didn’t want us to take a ride and he said that was okay with him.
Though it took longer than I would have wanted it to take, I made it. It took a whole lot of tears and some positive self-talk and some rather colorful language but I did it. At one point my parents pulled over and asked if we were sure we didn’t want a ride and I insisted we were fine. When we got to my house I looked absolutely horrible because I was tired, and wet and I had the brilliant idea to get my face painted at the concert which due to all the tears the paint had run and smudged and looked gross. At first my parents were really worried that something had happened but I explained to them that it was something I HAD to do and that they would never really be able to understand.
Later I was talking to my boyfriend and said to him that I did it and he reacted by saying, something like “yeah no kidding, it isn’t that far”. At first I was crushed that he responded in that way, until I talked to my best friend who explained to me that what he probably meant was that he knew I could do it so although he was happy for me, in his mind it was never in question that I COULD do it. Once she said that, I understood and realized that she was probably right. I kind of took the accomplishment of pushing home from the concert as a sign that I Really was going to be okay.
For awhile, that was enough to get me to begin to adjust to my life again but I still find myself unsure about my wound really being okay, and in trusting myself to make all of my own decisions, many of which had been taken away from me while I was bed bound. Approximately a month ago I really began to feel depressed. I let it go for a little while and then I decided it was absolutely time to reach out to someone who could maybe help me process everything. I called my regular doctor and explained to her a little bit of what was going on and how exactly I wasn’t coping. She gave me a few phone numbers of therapists she usually recommends, after getting in touch with one of them, who was not going to be an option for me I was discouraged. Here I had made what I felt like was a big step and asked for help and the first therapist I called was not going to be able to help. I am now pondering the other names she gave me and will hopefully come to a decision soon. In the meantime, being that I cannot turn my brain off, I have decided to try to learn a language. I don’t really know what possessed me to pick Latin, but I find myself with a textbook and workbook so it’s actually going to happen. That was a decision I made by myself!
**This post was so emotional that I’m not even posting it on the exact six month since discharge date (7/23/13) anymore. Oh well, writing it this way was cathartic. :)
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