Being a patient means having to practice patience
This is part three in my quest for abdominal pain relief.
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My appointment with the general surgeon went better than I expected. The main reason for this was that he actually listened. Not only that, he seemed to genuinely care, and if he didn’t he did a great job faking it. While waiting for the surgeon to come into the exam room, I began feeling annoyed because he was running late. The longer I waited, the more anxious I became. I had to force myself to breathe deeply and to remind myself that I needed to remain calm for this appointment. Lucky for me, I was able to find a comfortable position on the exam bed and took a short nap. This was the best thing that could have happened. When the surgeon entered the room, I rolled over and said “Good morning sunshine!”, even though it was long after 2pm. This caused the surgeon to burst into laughter and set the tone for my appointment. He thanked me for having a sunny disposition, as many of his patients had read him the riot act for running behind that day. By the end of our appointment, I realized why he was running late. This particular surgeon, doesn’t care about appointment time frames, his goal is to serve the patient the best he can no matter how long it takes. Instead of the typical 15-20 minute appointment, he spent well over an hour with me. He listened carefully as I explained my entire history with ovarian cysts, adhesions, and my botched hysterectomy. He would even repeat my account as I shared it in order to make sure he fully understood what I had been through and was currently going through. And the best part was that unlike my primary doctor who provided him with little information, he made sure to send all the details along with his suspicions to the surgeons he was referring me to.
Overall, this appointment was productive and I left feeling like we are heading in the right direction. However, I did leave with a little disappointment. Because my case is complicated, he feels that a general surgeon would not be the best answer for me. Instead he is assembling a team to tackle what is going on inside of my body. He is referring me to a gynecological oncologist surgeon because he believes there is more going on inside of me besides adhesions. He agrees that adhesions that have stemmed from scarring are a big part of the problem, but he also believes that I may have endometriosis. This is something that was never discussed or addressed in the past because everyone was either trying to cover their bottoms from the botched surgery or wash their hands from me as they didn’t want to become entangled in a lawsuit. Another reason he is sending me to this other surgeon is that even though past surgeons had removed the hot spots for ovarian remnants that were left behind after my botched hysterectomy, there could be more in other places as well as remnants of my uterus. He also said that there is strong evidence to suggest that my pelvic floor is collapsing. I will also be seeing a surgical gastrointologist. The reason for this surgeon isn’t because he doubts that my digestive issues are being caused by adhesions, instead it is to make sure that they are the only reason and to access any damage that the adhesions may have caused to my digestive system. We also discussed and began scheduling a series of tests that will further prove that my digestive issues are only symptoms and not the cause of my abdominal pain.
I know, I know, this sounds great. So why am I disappointed? Because my hopes for experiencing any relief before the end of summer no longer exists. In fact, with the amount of tests that need to be performed, I will be surprised if I have surgery before the year ends. The soonest my colonoscopy could be scheduled for is August 17. I am waiting to hear from the surgeons scheduling offices and will be shocked if I am able to see them before September. Because I haven’t had any relief from abdominal pain since the end of December, I just want to cry when I think about spending the rest of the year with this pain.
I had to have a little chat with myself this past weekend. (Yes, I talk to myself, get over it!) I had to remind myself to be patient. Unlike past experiences, I was not being blown off or dismissed. My doctors are listening and working towards helping me. I also had to remind myself that I need to keep living. Long ago, I would basically stop living whenever intense pain took over for extended amounts of time. I refuse to allow my body to keep me from enjoying the things I do. Of course I have to be realistic in regards to how much I can do, but I can’t allow this pain to completely stop my life. Instead of being grumpy about not being up to going to Disneyland 2-5 times a month, I am grateful that my husband and daughter make the time to go and don’t mind pushing me around Disneyland once a month. Instead of putting my life on hold, I am continuing to make plans. This coming weekend I will be at Disneyland and the following I will be enjoying sounds, sites, and smell of the ocean while lying on a sandy beach.
Each day I remind myself to be patient with my body. To enjoy what it allows me to do and not stress about what it won’t. This is something that I will have to do for the rest of my life. In my fantasy life, after surgery I would never experience this type of pain again. But the reality is that I will. If I am lucky it will follow the timeline that it did after my last surgery. I would be thrilled to go another 7 years or more before reaching this level of agony again. I also acknowledge that this pain may return even sooner. But no matter how soon I experience relief or how quickly the pain returns, I must continue to be patient with myself and to live my life the best that I can.
Wishing you a day filled with many reasons to smile and gentle hugs,
Tagged: abdominal adhesions, attitude, botched, chronic illness, chronic pain, endometriosis, fibromyalgia, health, hysterectomy, invisible disabilities, pain, patience, patient, pelvic floor, spoonie, spoonies, surgeon, surgery