Sometimes Things Can be a Real Pain in the Neck

While my boyfriend and I were waiting for authorization from his insurance company, he and to a lesser extent, I were continuing to treat his wounds with the Iodosorb and a foam dressing. Although, I want to be more involved than I have been, his schedule has required him to take more of the responsibility for his usual dressing changes. At his recent wound care appointment, his doctor explained that she felt the wound on the lateral (outside) part of his foot was doing so well and had become so superficial that she felt she would be able to glue it closed and then apply steri-strips to secure the edges of it. My boyfriend and I were pleased that at least one of his wounds was beginning to come along so the doctor applied medical grade superglue. His medial (inside) wound was also looking very good and the doctor told us to continue using the Iodosorb and the foam dressing. She then asked how the progress was with his new braces, which he then explained that he had received authorization and was just waiting to make the appointment. Although, I did not say anything at that point, I did feel somewhat blindsided by the information because I had repeatedly asked him if he had heard anything and was consistently told, “no”. To say that I was peeved, is an understatement, but I tried to take a step back and understand that all of this really was his responsibility and I should perhaps try to take more of a hands-off approach, especially because I had a lot of my own stuff to deal with as far as my shoulder was concerned.


By this point, I have seen three; orthopedists for my shoulder injury. The first orthopedist disagreed with the MRI report, based on her viewing the images personally, and also on the physical exam she performed on my arm. She said that in her opinion, I had not torn anything and what I had was a case of bursitis, and some early arthritis in the top of my shoulder but that ultimately, one of my muscles was just not as built up as she would have liked. She then recommended a cortisone shot to try to help my pain. I had had one previously, in my hip and I knew that cortisone shots were painful but that it had helped my hip so I agreed. I also agreed, because I had done some prior research and knew that getting one shot in my shoulder would be okay but that getting too many, could lead to any surgical repair being more difficult. I had originally, gone into the appointment, thinking that I would just hear her out and wouldn’t make any actual decisions but all of that seemed to go out the window. I think what happened was, I was thrown for a loop when she said that I did not have tendon damage and so I may have somewhat let my guard down. My initial thought was that I of course would not have gone ahead and scheduled any type of repair of the shoulder until I had at least gotten a second orthopedic opinion but maybe I felt that, that wouldn’t be needed so I went ahead with the shot. After I got the shot I went home and applied ice to my shoulder to try to minimize the pain and swelling and took it easy for the rest of the day.


I decided to get a second orthopedic opinion on my shoulder situation prior to beginning any physical therapy as a “tie-breaker” of sorts because the MRI report had said one thing and the orthopedist’s opinion was different. I went to the second orthopedist with copies of all the imaging that I had done of my shoulder and also the patient portal app that I had on my phone that documented everything from my initial orthopedist appointment. That orthopedist viewed the images and also agreed that it didn’t look like I had torn anything. He then did an exam of my shoulder, during which he asked me to move in all sorts of painful positions. At the end of all of this he explained the diagnoses he had come up with. According to him, I had Bursitis, a contusion of the shoulder, impingement syndrome and a neck strain. After hearing all of this I asked what my options are and was told that he could give me another cortisone shot but that at this time all he would recommend would be physical therapy. I accepted the cortisone shot because by that point I was more confident that I would not need surgery. I received the shot and left with the instruction to start physical therapy in about a week.

Of course while I was trying to handle all of the pain and inconvenience of having a shoulder injury, I was also continuing to assist my boyfriend with his wound care. His wounds in my opinion were beginning to stall in the healing process which somewhat bothered me but they weren’t really looking worse at that point so we continued to treat his wounds as directed, until I noticed something different. All of a sudden, when I was changing the dressings on his wounds, I noticed that some undermining was developing on one of them. I looked into the small opening as closely as I could, with the flashlight of my cell-phone and I realized that the undermining area looked to be very dry. Of course, I had learned all about moist wound healing so my first instinct was that something should be done so that the area could gain a bit more moisture. I explained to my boyfriend what I saw and what my thought process was and asked him if it would be okay if I called the wound care center and got some input on the situation.


When I called I spoke with the nurse that I communicate with very well and explained to her what I felt was going on. She then asked me what I wanted to do based on the supplies I had available. I told her that I would like to use Hydrogel in the new area and she said that if I felt it was too dry to go ahead and stop using the Iodosorb and to apply the Hydrogel. When I hung-up with the nurse I explained to my boyfriend what she had said and he said to go ahead with the new plan. I then had to figure out a way to apply the Hydrogel, which comes in a tube similar to a toothpaste tube, into a very small opening. After thinking it over for a minute, I decided that I could probably put some of the gel into a syringe and push it in that way. I was unsure if it would work completely as the diameter of the syringe was slightly larger than the opening I needed to squirt the gel into. I gave it a try and although I wasn’t sure if the gel went down as far as was necessary I knew that what I was able to get into it, would most likely help. Afterward, my boyfriend went home and I wasn’t going to see him or his wounds for a few more days. It ended up that I didn’t even get to see his wounds until the following wound care appointment. When we got there I was happy that we got the nurse that I had spoken to on the phone so I wouldn’t have to explain to a different nurse why we weren’t following the written orders. The doctor came in and told me that she had heard all about what was going on and what I had done. When she examined him she saw the part I was talking about and because the Hydrogel that I applied had done it’s job she told us to discontinue that and to go back to the Iodosorb, she also took a culture of his wounds because it had been awhile since one had been taken and she wanted to make sure that the new undermining area wasn’t caused by an infection.


The doctor called me a couple of days later and told me that some infection had shown up in the culture and she was considering putting my boyfriend on a topical antibiotic ointment. I said that it was probably a good idea based on what I had been seeing and gave the information for the pharmacy my boyfriend uses. I then called my boyfriend and explained to him what the doctor and I had discussed. He then told me that if we needed to do daily dressing changes while using the antibiotic, new supplies would need to be ordered because as it was he barely had enough to get him through until his scheduled visit to the wound care center. I was slightly peeved that he had forgotten to mention it at the appointment and though I voiced this annoyance to him, I also called the wound care center and asked that new supplies be ordered. It took several days for the pharmacy to get his antibiotic in stock so while we waited we stuck to the dressings schedule that we had been using.


By this point I had been going to physical therapy to try to decrease my neck and shoulder pain and to increase my range of motion. After a few sessions that consisted mostly of stretching, my physical therapist determined that in her opinion my first rib was slightly out of whack and she wanted to adjust it. Without entirely thinking it through, I allowed her to manipulate me so that my rib would go back into place. I went home afterward and actually felt somewhat better, almost like she had loosened something and although moving was still painful, I felt like I was able to move slightly farther. All of this continued for several weeks when I noticed that I wasn’t really getting any more improvement or pain relief. I had a follow-up appointment with the orthopedist after seeing my therapist for approximately seven weeks. During the appointment, we discussed that my shoulder pain was improved slightly but that my neck was still really bothering me, I also asked him if he thought my rib had been out of place and explained that my physical therapist had been doing some adjustments to it. He said that he didn’t feel that my rib was out of place at all but he recommended that we take a neck x-ray to determine a cause of my neck pain. When my orthopedist pulled-up the x-ray images on the computer, I myself was able to see that something didn’t look quite right. The orthopedist explained that I had a slipped disc in my neck. I was somewhat relieved that I had a real reason for being in so much pain and yet I was concerned because a slipped disc didn’t sound like a minor diagnosis. When I asked what should be done about it, I was told to continue therapy and that he would see me again if I felt I was still not improving after awhile. I continued physical therapy for about another week when I decided perhaps it was time for yet a third opinion. I called the orthopedist that my wound care surgeon had recommended and was able to get an appointment relatively quickly.

I am Sick of Being Confused and Frustrated

It was approximately, two weeks later when finally the day of my shoulder MRI arrived. I went to the MRI a whole lot calmer than I usually am, due to a mild sedative that I had asked my primary doctor to prescribe. Ordinarily, I do not take any medication prior to an MRI but this time I decided that it was a good idea because I had been told that I had moved during the one I had on my wrist and I did not want any potential movement to distort the images. After the test I tried to relax for a few days and focus on celebrating the holidays with my friends and family. When my primary doctor’s office got in touch with me to discuss the findings of my MRI, I was told by my doctor’s Physicians Assistant (PA) that one of the tendons in my shoulder was partially torn and another was completely torn and that a third may have been involved. As such it was my doctor’s recommendation that I be evaluated by an orthopedist. My initial reaction to hearing that I had torn tendons was unfit for print but let’s just say it was rather loud and colorful.


It was a couple of days after speaking with my doctor’s office, when I was finally able to think clearly enough to process what the PA had told me, when suddenly, what she had said didn’t seem to make sense. I contacted my doctor’s office via the patient portal and asked that my physician call me so that I could speak to her directly for clarification. When she called me back, my primary question, was how the method of injury corresponded with my diagnoses; because to me it didn’t seem like banging the back of my shoulder would have actually torn a tendon, let alone two and potentially three. My doctor, told me that I was asking a very good question and the only thing she could come up with was that I had slightly and only momentarily dislocated my shoulder, which had damaged the tendons, but that I should ask the orthopedist that question. I made an appointment with the orthopedist that my doctor recommended for the following week. While I was waiting for the day of my appointment to arrive, it occurred to me that if I had actually torn tendons that the usual treatment is surgery. I have finally learned though that second opinions are useful and so I reached out to my former wound care surgeon to see if he would be willing to recommend an orthopedist. It may seem strange that I contacted my wound care surgeon for an issue with my shoulder and maybe it is, it’s just that I have such a level of trust with him and obviously, he knows surgeons that have other specialties, my theory, was really, what did I have to loose?


During this time, boyfriend and I have continued to use the Iodosorb to treat his wounds and although they are not healed yet, his cultures haven’t shown any infection that needs to be treated. While this is clearly, good news, the doctor has suggested that he get evaluated for new braces because perhaps the fit is contributing to his wounds. While my boyfriend agreed that the evaluation seemed like a good idea, he kept putting off being evaluated. By then of course I was frustrated that my boyfriend’s wounds were not closed but I was more frustrated by his failure to be evaluated for new braces. My thought process was, if there is something that could potentially help his wounds heal and also prevent more from forming in the future, why the heck isn’t he getting it done? During his wound care appointment a few weeks ago, my boyfriend’s doctor, asked him both what was stopping him from having his braces evaluated and what they could do in order to help facilitate it. My boyfriend said that making an appointment that corresponded with his work schedule was a challenge but that he didn’t really need anyone at the wound care center to do anything to make getting the evaluation any easier. The doctor, told us to continue treating the wounds as we had been but that she really wanted his braces evaluated. She also turned to me and I think half-jokingly told me to make it happen. While she may or may not have been half joking, I took her seriously, because I understood where she was coming from in explaining that nothing she could do would help him if he didn’t take care of the root cause of the problem.


I let all of this go for a couple of days, hoping that my boyfriend would step up and do what everyone felt needed to be done. While I was waiting, I was also stewing to myself and talking to the therapist that I have been seeing for approximately a year and a half. After hearing her out and really considering all that she had said about my boyfriend and I each having different “roles” in our relationship that we tend to excel at, I decided on a plan. I determined that pleading with him to make his own appointment hadn’t been successful, which in my view left me with two options. I could both sit and do nothing about it and potentially, “let him fall on his ass” metaphorically speaking, Or I could offer help. I chose the latter, which I am pleased to report that he took me up on. Knowing, his schedule and all of our commitments for the near future, I was able to call and make him an appointment so that his braces could be evaluated. My boyfriend also allowed me to speak with his wound care doctor to request that she call the place where he gets his braces adjusted so she could give her medical opinion on his wounds and what adjustments may potentially help.


My boyfriend and I went to his braces evaluation together approximately one and a half weeks ago during which he and I did our typical “dance” of him explaining what is happening and me sitting silently and just observing. I think this tends to be my modus operandi because I have very strong boundaries when it comes to people speaking up for me and therefore am hesitant to do it for others, yet in this instance I do not think it was a wise decision. What ended up happening was little more than a colossal waste of time. Two things were done during this appointment, one of which was for a portion of his brace to be smoothed out so that it didn’t cut into his skin anymore. Of course that was a wise decision because his skin under that area of the brace is starting to wear down but it is not on his feet where his actual wounds are, although I do realize that smoothing that portion may help prevent his skin from breaking down further. The only other thing that happened was that my boyfriend was told that the company needed to contact his insurance company so that they could obtain authorization for new braces. It is my belief that this could have been done prior to his appointment because now he will have to go back at some point after insurance approves new braces so that he can be measured and casted for them. We are now waiting to hear back from either the braces company or his insurance company with either an approval or a denial of his new braces. Personally, I am not worried about his insurance company denying his request because he hasn’t gotten a new brace in several years and this one is clearly not fitting properly, I am just frustrated by yet another delay.

Can Things Get Anymore Absurd?

I am so sorry that it has been so long since I have updated, things got kind of hectic for a while and I temporarily needed to focus my mind on more pressing things than on updating you all. That said; buckle your seatbelts because I am about to unload just some of the absurdities of my situation to you all.



Approximately a week later I got the chance to look at my boyfriend’s wounds again and discovered that it had changed how it was responding to the treatments we were using. When I attempted to remove the Calcium Alginate from inside the wound I realized that it was sticking, as opposed to easily disengaging. To me that was a sign that the wound was no longer moist enough to warrant using Calcium Alginate and something else needed to be used to care for the wound. I then told my boyfriend what I felt like was happening and that it was my opinion that we should again put the Iodosorb in so that some of drainage would be absorbed but that a portion of it would react with the iodine and form a gel so that the wound wouldn’t become too dry. My boyfriend at that point said it was okay with him if I again changed what we were doing because his wound care appointment was a couple of a days later and we would be able to get professional advice then.


When my boyfriend and I were on the way to his appointment I asked him if he wanted me to explain to the doctor why we were no longer following her directions to care for his wounds. My boyfriend said that he absolutely wanted me to explain our thought process to the doctor so I went into the appointment with him ready to explain and yet also somewhat nervous that the doctor would be upset that we weren’t listening to her. When we got to the appointment my boyfriend and I explained what had changed and what we were doing to the nurse so that she could document all we had done as well as photograph the wound for my boyfriend’s records. When the doctor came in she told us that she had seen a picture and that we were right it did look different. I then told her what it had looked like the previous week and hesitantly, the steps we had taken to take care of it. The doctor told me that she liked the change I had made and that it was okay that I decided that because I, “know wound care”. I was relieved that she didn’t feel like I was overstepping and also that she agreed that what we had decided to do was the right decision. She then told us that she was somewhat concerned that its wet and somewhat macerated appearance was due to an infection although we all felt that was unlikely because my boyfriend had no other signs of infection. A wound culture was taken and we were told to continue treating the wounds as we had been and that she would call if the cultures showed anything that “impressed her”. We made a follow-up appointment for two weeks later and left hoping that we would not receive a phone call saying that he needed to start antibiotics.


It was around this time that I experienced a freak accident. I was getting into the passenger side of my boyfriends car as I always do when somehow I managed to bang the back of my shoulder incredibly hard on the doorframe. My boyfriend who was outside of the car at the time actually heard the impact and was at my side seconds later asking what had happened. After a minute, when I was able to get words out, I told him what had happened and that I was in a considerable amount of pain. My boyfriend then quickly put my wheelchair in the trunk and got in his car so that we could decide what needed to be done about my shoulder. I explained to him that the point of impact was on the back of my shoulder in the area where the arm meets the shoulder but that I also had pain radiating up my neck and down my arm, about half way to my elbow. My boyfriend then looked at my shoulder to see if it looked swollen or was beginning to bruise. He told me that it looked fine but that it was up to me what I wanted to do as far as treatment. I decided that we would just go back to my house where I would apply ice and take some ibuprofen. I did that, knowing that it was important to try to prevent or at least decrease swelling. A few hours later, before my boyfriend left, he asked me what I was planning to do as far as my shoulder because the Ibuprofen and ice hadn’t really helped my pain. I told him that I was just going to go to bed and would reevaluate it in the morning. I went to bed anticipating feeling muscle soreness the next day but not really anything more than that. Unfortunately, after five days of regularly icing my shoulder and taking ibuprofen on a schedule, my pain had not gotten any better. I knew it was time to make an appointment with my primary physician.

I was able to get an appointment with my doctor for the next morning, which my boyfriend brought me to. When I saw her I explained to her what I had done and also handed her a rough drawing of my injury. She found my drawing helpful and after examining me she told me that she could feel a very severe muscle spasm and said that she was going to give me a prescription for something stronger than regular ibuprofen. My doctor also told me that she wanted an x-ray of my shoulder, although she felt it was highly unlikely that I had broken anything. As it was much more likely that I had done some damage to the tendons or ligaments, she explained that she was going to have her office staff contact my insurance company, regarding authorization for an MRI.

After I left her office my boyfriend and I dropped my prescription off at the pharmacy and proceeded to get an x-ray. When I went to get my x-ray, the technician asked me how I felt like it was going to be easiest to get the views they needed, while also trying to prevent my pain from getting worse. I explained that while I understood it was unlikely to work, that I would prefer to stay in my wheelchair. The radiology technician was unsure if that would work so she asked one of her coworkers into the room so that we could brainstorm. Ultimately, we decided to try it with me in my wheelchair and see if the images were clear, I was happy to hear that they could view what needed to be seen and that I was not going to have to transfer out of my wheelchair. I waited a couple of days for the results of the x-rays before I heard back from my doctor. I was told that the x-rays had come back negative for fractures and also for signs of a separation. At that point, I wasn’t being told anything other than what I already assumed. Then it was just a waiting game, while I waited for authorization for the MRI. For a few days during this time, my mind did start to wander into the “land of pity party” while I do not like it when other people pity me, I couldn’t help but feel somewhat sorry for myself. Here I was, still in a splint months after injuring my wrist so my mobility had already suffered when I suddenly injured my shoulder causing me to be nearly completely immobile. Luckily enough, I do have a support system in place so I was able to rest and let other people take care of me to a certain extent, all the while, helping to monitor my boyfriend’s wounds.

When Normal Test Results Are More Stressful Than Helpful & Why Won’t My Boyfriend’s Wounds Just Heal Already?

In the time since I last wrote, I have had several doctors’ appointments and have undergone various tests in hopes of finding some solutions to all of the medical issues I have been dealing with. I have seen an Infectious Disease Specialist, a Vascular Surgeon and have begun physical therapy for my wrist. I originally went to those appointments somewhat hoping that something abnormal would actually be found. It may seem somewhat strange to you but my thought process was that if the doctors could find an actual physical cause of these issues than a solution could be recommended.


One of the first appointments I had was with the Infectious Disease specialist. Being that, I had seen Infectious Disease specialists for various wound-healing issues and a few times for different kidney infections, I was not at all concerned about what he was going to do during my initial appointment. I sort of went into it as it being an information-gathering meeting. Of course I wanted him to fix the infection so that I could start feeling like myself but I was curious to pick his brain and learn what options I would have as far as a mode of delivery for any medication he would want to prescribe.


When I first went in I gave him the background on the kidney stone that had been removed eight months prior and all of the associated infection information. I also explained that I had been experiencing lingering back pain since even a month prior to the stone being removed. Of course I also told him the primary reason I was there was because I had been diagnosed with an asymptomatic infection approximately a month prior to seeing him that suddenly had me experiencing symptoms and that my urologist had concerns that the bacteria was resistant. The Infectious Disease specialist asked various questions about what symptoms I was experiencing and looked into which antibiotics I had been on previously for Urinary Tract Infections. I gave him a list of the medications that I had been on and when I was on them and also how I had felt on them. After looking into my medical record, he questioned about “The wound” that originally began this blog. I gave him a condensed version of what had happened and who had ultimately gotten the wound to heal. It turns out that the Infection Disease Specialist knows the surgeon that I had such a great experience with, what a small world! The infectious disease specialist suggested that I drop off a urine sample at the lab so that it could be determined if the bacteria that had shown up in the last urinalysis were still present or if it had changed. I was on board with that and asked what he was planning to do to treat the infection, he then explained that he couldn’t answer that without knowing definitively which bacteria he was going to have to treat. He also said that he wanted to look into some more diagnostic testing to see if he could find a reason for the recurrent UTI’s and also to see if my kidney was what was actually causing my back pain.

The diagnostic testing that he wanted me to have was just a simple CAT scan, which we were able to schedule for two weeks later. I went to the CAT scan knowing that the technician that performed the scan would not be able to tell me anything but confident that the Infectious Disease doctor would call me within a couple of days to give me my results and to help me decide where to go from there. During the time that I was waiting for the day of the CAT scan to arrive, I received a call about my urinalysis. I was told that the bacteria had changed to something that would respond to oral antibiotics. I was relieved by this information because I really did not want to experience having an IV or a Central line or PICC line again which I know is how they would have had to administer any type of intravenous antibiotic. I began taking the antibiotic and the symptoms of the UTI that I had been experiencing began to diminish. I continued to take the antibiotics for the prescribed time and a few days after my CAT scan was completed I made a call to the Infectious Disease doctor because I had not heard back regarding the CAT scan. When I spoke to him he informed me that my kidneys both look good and that he did notice some thickening of my bladder wall. He said that that was likely just due to the irritation of having to use a urinary catheter. He also told me that I have several gallstones but that typically they are left alone unless symptoms develop. I questioned if the gallstones could be causing what I was calling kidney pain and he said no because the gallbladder is on the right side of the body and my pain was in my left flank. We sort of left it under the understanding that he would forward all of my results to my urologist but that he was confident in saying my kidney was not causing my pain, he did recommend seeing my orthopedist in case something related to my disability was causing my pain. I am not entirely sure that I agree with him, what is a patient to do when a doctor is saying the body part the patient is concerned about is fine but the patient knows in their gut that it is not?


A couple of weeks later, I had an appointment with the vascular surgeon, as my podiatrist had suggested. As I have said, I didn’t want their to be anything catastrophic wrong with me but I was somewhat hopeful that the vascular surgeon would be able to come up with a reason for my lingering toe pain, even after the subungual hematoma had healed. I explained to the vascular surgeon, when the injury to my toe had taken place and the steps I had taken to get it to heal. When he examined my foot and lower leg he was unable to feel a pulse. I was not entirely concerned by this news, as I know that I have poor circulation and my podiatrist had been able to feel a pulse a few weeks earlier. The vascular surgeon said that he wanted to basically test the blood pressure in my lower legs and feet and that we would go from there. I went into another room with the person that was going to perform the test and was hooked up to several blood pressure cuffs and leads, all going into a computer. The test did not take very long at all and the results were immediately given to the vascular surgeon. He then came back and explained to me that whatever was causing my lingering toe pain was not vascular and he told me that he would forward the results to my podiatrist. Typically, I would be happy that nothing was wrong but I found myself feeling nothing but frustration. I left the appointment and explained to my boyfriend what the vascular surgeon had said and that I myself was beginning to question if this pain was in my head. My boyfriend agreed with me that it was possible but he doubted it because I am so in tune with my body.


This was also, right around the time that I had begun going to occupational therapy for my sprained wrist. It had been well over a month since my injury and I was still experiencing some pain and swelling. During my first appointment with the therapist she compared the size of my injured wrist and the functional strength of it to that of the wrist that I had not injured. She said that it was definitely swollen but nothing too terrible. She also said the area that was swollen felt squishy and that it was just fluid that my body would most likely just reabsorb. We spent the first several appointments with her just icing my wrist and massaging it in hopes that it would get the swelling to decrease. She explained to me that we wouldn’t really be able to do very much else for it until the pain went away and that once we could begin to move it we would have to go slow. While I understood where she was coming from and appreciated her honesty, I was becoming very frustrated because all of the copayments to see her were beginning to add up and I didn’t feel like she was doing anything that I wouldn’t be able to do for myself at home. Eventually, I had gotten myself mentally prepared to have that conversation with her when I realized, that although, it was still somewhat swollen, my wrist was suddenly not painful! When I went to her a couple of days later I told her that my wrist hadn’t hurt for a few days and that although I was continuing to ice it at home, it was still swollen. At that point, she and I began to do some gentle stretches and range of motion exercises in the hopes of both decreasing the swelling and hoping that slowly I would be able to move my wrist more normally.


All the while, I have still been helping my boyfriend take care of the two wounds on his foot. He has been seeing the other doctor from the Wound Care Center because the surgeon that we had both seen previously is changing his schedule so he hasn’t been as available. When the doctor first evaluated his wounds, she was thrilled that we had been told to use Iodosorb and a foam dressing to care for his wounds. During the initial appointment with her I explained that in my opinion the small one in the center of the callous was a puncture and that I wasn’t sure of the depth of it. She then decided to remove some of the callous so that she could better evaluate if the puncture had any depth or if it was mostly superficial. We were pleased to discover that it was pretty much superficial. I was very relieved because part of me feared that the puncture had formed a tunnel and I personally know what it is like to deal with a tunneling wound. After several weeks of doing the same dressings and the wounds beginning to look very good, the doctor proclaimed the puncture to be basically closed and the other one very superficial and although it looked healthy she was concerned that it was beginning to appear too dry. She instructed us to switch from using the Iodosorb on that wound to a Hydrogel so that the wound could gain more moisture. She asked to follow up in about a month and told us that she expected to be able to discharge him at that point.


I and too a lesser extent my boyfriend, continued to dress his wounds as the doctor had instructed and although I was happy with how they looked, I did not think that the puncture was as close to closed as the doctor did and I highly doubted that the other wound would enable her to discharge my boyfriend within the month. At approximately, the three week mark, I was doing my boyfriend’s wound care and was sad to discover that the wound we were trying to keep moist, had become entirely too wet and macerated. I then asked my boyfriend if he felt that I should continue to do what the doctor had instructed or if he wanted me to change what I was doing to something to help control some of the excess moisture. The reason we did not try to get in touch with the wound care center at that point was because in my experience they would have just asked him to come in the week before he was originally scheduled and he was unable to reschedule due to his job. My boyfriend told me that he wanted me to continue doing what the doctor had said and that she could change the orders the next week if necessary. I understood where he was coming from in the sense that it is not up to the patient to change the course of treatment but I was concerned that it would get much worse in the time we were waiting for his appointment. I explained all of this to him while explaining that I would not do anything that would harm him and that I would only change the plan if he approved. I myself have learned a ton about wound care and how wounds that are healing are supposed to look and so I didn’t doubt myself, as much as I was trying not to override my boyfriend’s rights as the patient. Ultimately, he allowed me to change his dressing from the Hydrogel to Calcium Alginate that I would put inside of the wound to try to help absorb some of the moisture, prior to putting the foam dressing on top of it. He was going to be at his house for the next few days and so I gave him some dressings as well as the Calcium Alginate and some Iodosorb and even the Hydrogel just in case the situation changed again. I asked him to please text me a photo of his wound a few days later so that I might be able to help him decide what he should be using.

Why Can’t I Just Be Pain-Free and Healthy? Dealing with Several Issues (PART 2)

After soaking my toe in warm water daily, with absolutely no improvement, I followed up with the podiatrist’s partner one week later at the wound care center. When I got there, the nurse that I had always been most comfortable with saw me. She examined my toe, and said that it looked really healthy; that she didn’t see any signs of infection and that it seemed to be healing well. I told her that I agreed it did not seem to be infected but that my pain has not changed at all. At that point I attempted to pick her brain to see what she could come up with for possible causes of my discomfort and what solutions she may have. She was completely stumped and said we would have to ask the podiatrist. When the podiatrist examined my toe he was thrilled with how it looked, I explained that I was still experiencing pain and nothing I was doing was relieving it.


His only suggestion was to cut the toe off of an old pair of sneakers so that it wouldn’t have any pressure on it. I am not sure why I didn’t press further, but the fact is, aside from that appointment I hadn’t really been wearing shoes at all and was still in pain so I did not really think that destroying a pair of sneakers was going to help. The podiatrist sent me home with instructions to cover the toenail area with Silver Gel and to cover it with a band aid and a very small dressing that is the equivalent of a compression stocking, to help the swelling. He also recommended that I return the following week so that my original podiatrist could see me. After that, the nurse came in to apply the dressing to my toe. While she was doing that, she explained that Silver Gel is basically Bacitracin that has silver in it, which as I know by now, has antimicrobial properties. I left confident that I would be able to adequately care for my toe until I could be seen again.


During the time I was waiting for my appointment with the podiatrist, several other health issues needed to be addressed. Firstly, I had two appointments with the orthopedist regarding the pain in my wrist that was not decreasing, though I was on the prescription dosage of Ibuprofen and had been using the splint regularly. During the first appointment he had told me to just wait it out a few more weeks, unfortunately, waiting it out did not seem to be helping. When I went back to the orthopedist he examined my wrist and then left the decision as to the next step up to me. He said that it was certainly reasonable to wait it out a little longer yet he also explained that getting an MRI scheduled was absolutely warranted. I decided to schedule the MRI firstly, because I really did want answers and secondly, I figured with scheduling the way it usually is, my wrist would have time to feel better prior to getting it, which would enable me to cancel the test.

Awhile back, my urologist ordered a routine urinalysis because I am still looking for a cause of my lingering back pain. A few days later I called the urologist’s office, after receiving my lab results via the Patient Portal that my local hospital has. While I as a patient, do like that I personally get to see my results, along, with a chart that gives the normal ranges of numbers. The lab results from the patient portal of course do not erase the need for a physician, both to explain things to me in plain English and also to call in medication if necessary. When I spoke with the nurse, she said that my urologist was wondering if I was experiencing any other symptoms that would indicate a Urinary Tract Infection (UTI). I then explained to her that the only symptom was the back pain but no new symptoms had developed. She then explained to me that the reason she was asking was because my urologist was wondering how I felt about Not treating the infection if I was asymptomatic. The doctor’s concern with treating my infection was that I was becoming resistant to antibiotics that he was able to prescribe and so treating the resistant bacteria would be the job of the infection disease doctors. I explained, to the nurse that I felt like not treating it was the wiser decision at that point and that I would call the office if any symptoms developed.


All the while, my boyfriend informed me that he had wounds on his foot. Seriously, how much more medical drama could I be expected to handle? I admittedly, ignored my boyfriend’s wounds for a couple of weeks, because I was dealing with my own stuff. I also know that my boyfriend, while stubborn at times, was not going to let a wound get out of control so a part of me didn’t feel all that bad for somewhat ignoring his needs. When I did get asked to look at them, I did and saw two wounds, both of which were caused by his ill-fitting braces. I knew that my boyfriend had already gotten his braces adjusted so that they would hopefully no longer add to the problem. I then examined the wounds; the first one was open but had very little depth and to the best knowledge was not showing signs of being infected. The second wound, looked like a very small puncture in the center of a large callous. While the second wound appeared smaller than the other wound, it actually worried me more. I was concerned because I could see that it had some depth but due to its size I was not able to visualize exactly how much depth it had. I then covered both of his wounds with Bacitracin and put one of the only dressings I had on them. At that point we decided to call and schedule an appointment at the wound care center so that my boyfriend could be evaluated and we could be given some appropriate dressings. When I called to try to get an appointment for my boyfriend, we hoped that one would be able to be scheduled with the same wound care surgeon that we had both grown so comfortable with. We were pleased to hear that the surgeon was scheduled to be at the wound care center the following week so an appointment was scheduled. It seemed to me that we were going to be spending the day at the hospital because that day was when I was also scheduled to see the podiatrist.


The day before my boyfriend and I had our appointments at the wound care center was the day that I had the MRI of my wrist scheduled for. I went to the MRI appointment not at all worried about the test, mostly because I had certainly had MRI’s before but also because I had several other concerning things on my mind.


That week, I had noticed that I was starting to develop signs of a UTI; of course I had already been warned that the cultures had come back indicating that I had one so I was not surprised when suddenly I noticed that my urine was cloudy and had an odor to it, what did surprise me and temporarily scare me however, was when I noticed small amounts of blood in my urine. Of all the UTI symptoms the blood was of course the most concerning, until I remembered that with all of the Ibuprofen I had been taking, it was possible that the medication itself was causing that particular symptom. I mentioned all of this to the nurse at my urologist’s office and she agreed that it was possible that the Ibuprofen was causing the small amount of blood and as such she suggested I try to ease up on the dosage if it was at all comfortable. She also recommended that I have a consultation with an Infectious Disease doctor at my local hospital because, the previous bacteria was resistant. I did ease up on the medication and the blood in my urine eased to exist, at least to the naked eye. I also called and made an appointment with Infectious Disease, just to cover my bases.


In addition to the kidney pain and my painful wrist, I was of course following up with the podiatrist for my painful and still swollen toe. When I got there I casually mentioned all of the other health issues that were going on. When the podiatrist looked at my toe she was incredibly pleased with how it looked. The hematoma was gone and the nail was beginning to grow in nicely and I showed no obvious signs of infection. I then asked her why she thought I might still be in pain and she was somewhat unsure. It was then that she asked me if I had any other symptoms that might seem unrelated, that she would be able to use. After thinking for a minute I told her that I had been having some muscle spasms in the calf of the leg that was having the toe issue. At that point she excused herself to go talk to the other podiatrist, when she came back, she had a business card with her. She suggested that I see a vascular surgeon just to rule out anything that could be fixed. She also said that if the vascular surgeon was unable to help that I should seriously consider going to a pain specialist. Clearly, I had some things to think about and maybe even some doctor’s appointments to make, that would have to wait though, because an hour later, my boyfriend had his appointment with the wound care surgeon.


During his appointment we both explained what had caused his wounds, what we had been doing to treat them and that the issue with his brace, which caused them had been fixed. During the evaluation, the wound care surgeon voiced his concern that the situation was not entirely fixed because the callous was still present. The small wound that was on the callous was considered closed, too the wound care surgeon. I am currently slightly worried that it has more just formed a scab but that the puncture depth may still be a problem. The only reason I can come up with for not voicing my concern was that I somewhat felt like it wasn’t any of my business. If my boyfriend wasn’t worried, then why should I be? The wound care surgeon told my boyfriend and I that we were to put Iodosorb in the wound and then cover it with Aquacel Foam. Iodosorb is a brown paste, the purpose of which is to absorb fluid, and remove any fluid or debris that the wound may have. As the Iodosorb absorbs the drainage from the wound, iodine is released from the paste, which helps to kill bacteria. Aquacel Foam works, by gelling on contact with the wound’s drainage and then pulling the majority of the moisture away from the wound so that maceration does not occur, yet it also, allows for an appropriately moist environment for optimal healing. We were then told, to use foam dressing on top of the callous, not so much for absorption but to provide some protection from his brace. After we were both clear on the instructions to take care of his wounds we were told to schedule a follow-up appointment a few weeks later.

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.

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.

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.

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.

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. :)

Changes

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?

A (Happy) State of Confusion

The following day, when my boyfriend arrived he almost immediately checked to make sure that my wound was still doing well. We were both pleased when he told me that it was still closed and was beginning to look even better since we had started using the Zinc.

When my boyfriend and I went to the Wound Care Center for his appointment later that afternoon, the nurse was incredibly happy when she took the dressing off of his wound. She said that to her it looked closed and asked how long it had looked that good. My boyfriend said that it had looked that way for about a week and that it hadn’t been draining. I looked at his wound and was very pleased to see that it was in fact closed.

When the surgeon came in the room we spent a few minutes catching up because he had been away for a few weeks. He agreed that my boyfriend’s wound was healed and told him that he no longer had to keep it covered but that he should use moisturizer on it for at least the next several weeks. That sounded like an awesome plan. The surgeon then asked us what we were going to now with our lives being that neither of us needed to see him anymore.

At that point I spoke up and asked if he had heard that I was at the wound care center the previous week. I was surprised when he said that no he had not heard that and then asked me what had happened. I in turn was surprised because I thought that the nurses would have told him and also because I knew I had already blogged it and he previously told me that he was reading. I told him that the week before I was seen, my wound had opened and I had gotten really scared and wanted it checked. The surgeon then said that it was a very good idea to get it checked because it is always better to try to catch it at the beginning. I told him that that was exactly my thinking when I called to make the appointment. I also explained that it had closed by itself again before my appointment but that I went in because I was nervous.

The surgeon then told me that the nurse and doctor that had seen it the previous week must have been confident that it was actually doing well, or else they probably would have told him. I kind of assumed as much. The surgeon then proceeded to tell me that if it opens again I should definitely come get it checked because it “could be osteo”. I knew from previous experience that “osteo” relates to bone. I said that I would absolutely come back in if I were uncomfortable with how it looked. We left the Wound Care Center and began to live our lives again.

Things were going well for about a week when I suddenly got “that” feeling. The area was a little sore but it was mostly an emotional gut feeling that had me on edge. When my boyfriend came I asked him if he would please check and see if anything funky was going on. He looked and said that it didn’t look open to him but an area below the wound seemed to have formed a very small blister. I had no idea what to think of that news so I asked to see a picture. I saw something that may have been a very small blister but nothing was draining so I took the “wait an see” approach. On one hand I know that things need to be checked as soon as possible, yet I also didn’t have the horrible gut feeling that I usually get. We waited a few days and when my boyfriend next checked it he said that the blister seemed to have either popped or been absorbed by my body because it was gone but now that same area had a small piece tissue that had come off. We were unable to tell if it was just dead skin from a part of the blister or if somehow some of the scar tissue had sloughed off. We’re both rather confused by the situation but neither of us really feels like it absolutely needs to be seen. We are going to continue to monitor it to see if any other strange things happen, if so we will definitely get in touch with my surgeon.

Boyfriend is Doing Well, I Need to Relax and Await Answers

My boyfriend and I continued to treat his wound with the Bactroban ointment and a gauze pad and just as the surgeon predicted, it continued to do very well. When we went back to the wound care center the following week even I was pleased with how small it had gotten. The surgeon was also happy with its progress and told us that we should continue using the ointment for a week and then after that just to cover it to provide some protection, by that point it would probably be closed. The surgeon said that he wouldn’t be able to see us for a few weeks but to make an appointment for three weeks later. We made the appointment for three weeks later and left.


It has now been a little over eight weeks since I have been discharged from the wound care center and approximately three weeks since my visiting nurses have stopped. I am still diligent about making sure that I do not stay in one position for very long and still periodically have my boyfriend check to make sure that my wound is closed. It was still closed after seven weeks so I decided that my dad’s birthday was when I was going to officially tell him the good news. I wrote the dates that I had been discharged, in his birthday card. He was incredibly happy to hear that I had been discharged, and while I suspect that he knew already, he did not say anything. My family and I were just starting to adjust to me being fully discharged when a few days ago I started to get a bad feeling.


I cannot explain what I felt, other than to call it a “gut feeling” I feared that my wound had reopened. I tried to remind myself that I had had that feeling before since I had been discharged and each time my wound had remained closed so I was probably just overreacting. When my boyfriend was here two days ago, I asked him if he would please check for me because I was really nervous, because the day before I thought I may have seen a little bit of drainage in my clothing.


As soon as my boyfriend saw my wound he said, “Yeah, it’s opened”. I was not surprised by what he said but I still needed to see it for myself. He showed me a picture of it and sure enough, a tiny portion, the same part that had opened previously was open again. I took a minute to just stare at the photo in disbelief that this had happened again. I was so upset that I could hardly form coherent thoughts to have a conversation with my boyfriend. At that point, admittedly I got a little more emotional than I usually do; all my boyfriend could do was hold me.


After a few minutes I needed some insight from someone that was a little more removed from the situation so I sent my best friend a text message. Explaining that it was open again and I had no more coping skills left and needed her suggestions. After she got over the initial shock, she suggested that I call the wound care center and see if someone could see me. She also told me that I should try to relax and zone out and forget about things for a while.

I was really upset that my wound had reopened; I also could not believe that it had happened just a few days after telling my family that I was fine. I realize it was just a coincidence but I couldn’t help but think that my making the announcement had somehow caused it to open again. By that point, I knew a decision had to be made about whom I was going to call. I decided to take my friend’s advice and call the wound care center and explain the situation. I did not want to call my visiting nurses because I knew that if one of them appeared it would instantly cause drama in my family and I could not put them through that again. When I called the wound care center the receptionist originally thought I was playing an early April Fool’s joke on them, once I explained that I was serious she began to check the schedule to see what could be done about getting me seen. She was able to make an appointment for me for the week before the surgeon comes back, with the doctor that I had seen when he was out of town before. She then asked me to hold on while she spoke to the nurse that I was most comfortable with at the wound care center. When she came back to the phone she told me that the nurse had suggested I just cover the wound with a clean dry dressing until I could get to the appointment.

My boyfriend covered my wound with one of the few dressings I have left, a Tegaderm Foam Adhesive and we just tried to relax and not worry too much. I go back to the wound care center next week so I am just trying to remain positive, until I get told just what is going on; if the part that reopened is just superficial or if it has depth and will therefore need more treatment.

What The Hell is Happening Now?

I know it has been a long time since my last post. I apologize; it is just that my boyfriend and I do not live together and I haven’t actually been able to see his wound in person very often.



His wound was doing incredibly well; it was appearing much smaller and had no signs of infection. Just as I was beginning to relax, he threw me a curve ball. He sent me a text message two weeks ago on the day that he had an appointment at the wound care center. He told me that when he woke up, he discovered a blood blister directly above the wound and asked me what he should do to cover it because he was worried that the dressings he was using would cause it to pop. At first I thought he was just messing with my head and trying to get a reaction out of me by claiming to have a blood blister so I told him to prove it. Minutes later I received a picture of what in fact was a blood blister.


I took a breath and picked up the phone and called him. I asked what size dressings he had, hoping against hope that he had one that would be big enough and loose enough to cover the entire wound, including the blood blister, without being so tight that it would pop. Of course he did not have any of the type of dressing that I wanted him to use. I told him to just carefully cover the wound itself, avoiding the blister as best he could and then get to my house as soon as he was able so that I could put a more substantial dressing on it prior to his appointment that afternoon.


When he arrived at my house about an hour later I looked at his leg and saw that he had a weird shaped blister, more like one large one and then a small one directly next to it. The smaller one appeared to have ruptured but the big one was still intact and the primary wound did seem to be doing very well. I then loosely covered the entire “situation” with 4x4 gauze, knowing that it would be sufficient until his appointment a couple hours later.


When we got to the wound care center we told the nurse that the wound had been doing well until that morning when a blood blister was discovered. The nurse uncovered the wound and told us that the doctor would be in soon. We waited and when the doctor came into the room we explained what was going on and my boyfriend’s thoughts on what caused the blister in the first place.


The surgeon then said that he was going to test the fluid in the blister to make sure that it wasn’t showing any bacteria that would need to be treated. He poked a tiny hole in the blister with a small needle and aspirated some of the fluid. He then said that the wound should continue to be treated the same way we had been, with the Bactroban ointment and just a small piece of gauze to cover. He said that if the culture came back showing anything that needed to be treated he would call to let us know but that he wanted to see him again in two weeks.


My boyfriend took care of his wound for himself for almost the entire two weeks and kept telling me that he thought it looked like it was doing well. I was happy to hear that he thought it was fine, but I was also a little bit nervous that he would minimize it if things weren’t going well. I hoped though that he was aware of just how quickly things like this can go downhill and would at the very least tell me if it began to change. Two days before his appointment at the wound care center I asked if I could please see another picture, so that I could reassure myself that he really was “fine”. My boyfriend sent me the picture he had taken that morning and I was disturbed by what I saw. When I had last seen it in person, I noticed that the blister appeared to be flattened out and was looking more callous than blister. The picture he sent me showed even more of the dark calloused area. Admittedly, I flipped out when I saw the picture. In hindsight, I realize that most of my reaction was caused by not being able to clearly see what was going on. My boyfriend tried to explain to me that it “wasn’t that bad” and that it was only the blister that looked “kind of gross”. I wanted no part of his explanation and shut down the conversation. Not the best idea in that situation, but being that nothing could be done about his wound at that point, it was really not worth it to discuss it anymore.


A couple of days later we went to his appointment at the wound care center and I explained to the nurse that I personally hadn’t seen it in a few days but that I did not feel comfortable with how it looked. The nurse took the dressing off and said that the blister had flattened out and was now a callous. I took the opportunity to look at the wound in person for the first time since I had flipped out about the picture I had seen. When I saw the wound I was happy to see that it was not nearly as bad as it had appeared in the picture. When the nurse left I told my boyfriend that it was not as bad as I originally thought, but that it still, “wasn’t pretty”. A few minutes later the surgeon walked into the room and when he looked at the wound a really funny look appeared on his face. His face seemed to say, “What the hell happened, what do you want me to do about that and how am I supposed to work with that” all rolled into one facial expression. He then asked when it had become calloused and I stopped laughing so that I could tell him that it had begun about five days prior. The doctor then began to scrape away the calloused area and when he did he was pleased with how it looked underneath. He said that he was also really happy with how the primary wound looked. The doctor told us to continue treating it the same way we had been and that he wanted to see the wound in a week. My boyfriend and I left the appointment happy with how things were going and admittedly I personally, was still somewhat giggly because I still had the look of the doctor’s face in my head.