As the clock struck midnight on January 1, 2103, I imagined that this year would be filled with recovery, health, and happiness. Unfortunately, I have been in the hospital numerous times since the start of the new year.
Approximately three weeks to a month ago, I was in the midst of a horrible flare up. I got a mouth ulcer on the roof of my mouth that was about 3cm in length. It nearly covered the entire roof of my mouth. The pain was unbearable. Eating and drinking water was nearly impossible. Talking was difficult and others found it difficult to understand me. Waking up in the middle of the night and the first swallow was excrutiating. I was hospitalized in Edward here in Naperville for four days. I was treated with four days of IV antibiotics (40mg) and pain medications. Typically this would be enough to decrease the ulcers and effectively treat the flare up. Despite the steroids I continued to worsen. I woke up at 2am one night and was in so much pain. Something told me to look at the ulcer in the mirror. I was shocked to see that it was covered in blood. I woke my mother, and she didn't know what to do either. In 8 years of having these mouth ulcers I had never had this happen. I took some medications and drank some water and managed to fall back to sleep. I awoke in the morning and texted a picture of the bleeding ulcer to my rheumatologist. She immediately responded, stating that I needed to admit myself into the hospital. Since I had already gone to Edward, I was instructed to go to UIC because this would allow my rheumatologist to have direct control over my care.
I really REALLY did not want to go. I don't cry often but I burst into tears. I am so sick of going to the hospital. I feel better and comfortable when I am at home in my own environment. My doctor was very concerned with the bleeding and also with the fact that the ulcer was so deep that it was reaching the bone. She wanted to prevent the bone from eroding. Should the sore become infected and spread to the bone, this would create serious implications. The infection can then spread further throughout my body and possibly into my brain. I was terrified. My mother and I drove to my sister's house in DesPlanes and she drove us into the city. I was immediately uncomfortable at this hospital. I hate being that far away from home and in a place where I had never been. I was first treated in the Emergency Room. The doctors and nurses were so nice. I had a team of three residents who discussed my case with me and they informed me they would be my team for the duration of my stay. They had read about Behcet's before but had never seen it in a patient, so they were eager to learn about it. Whenever I go to a teaching hospital such as UIC, it is amazing how many doctors come to see me because they are interested in such a rare disease. I can sometimes have as many as 20 doctors simultaneously examining me and asking me questions about my symptoms and the treatments I have tried.
My mom and sister stayed with me until I was about ready to be admitted. As soon as I got settled in my room I burst into tears. Things were not going well. They would not give me pain meds through the IV, which is always a necessity when I am in the hospital. Swallowing pills makes things worse because it scrapes the sore and prevents it from healing. I fought with the resident on duty. She was not one of my many doctors that were on my treatment team. Since it was about 10pm, many doctors were not around. She informed me that she didn't have any orders for IV pain medications. I was so frustrated because the oral medications would not adequately control my pain. I told her she could contact my doctor, and she told me that I could call her. She proceeded to stand at the bottom of my bed with her arms crossed while I called my doctor. She didn't answer and so I texted her. About an hour later, my doctor texted me back asking who this resident was because she needed to speak wtih her ASAP. She was livid. She asked me to give her cell number to the doctor and have the doctor on call contact her. In addition to not receiving pain meds, I was not getting the medications that I take daily at home. This was rediculous. I had written my at home meds down for the nurse, and told another nurse my med list, and also informed the doctors what my meds were. There must have been orders for my medications because they had given me my Cumadin, but nothing else. Also they gave me IV steroids and fluids. It was so confusing and frustrating. This doctor on call said she was not at liberty to give orders for pain meds because she isn't aware of my history. Then her responsibility is to contact my doctor to receive orders. Plus, her having me call my doctor in front of her was extremely unprofessional. I could have been calling anyone as far as she was concerned. My doctor was not happy with that either. Long story short....She never ended up contact my doctor. She gave me one dose of IV pain meds, which would only last two hours. My doctor ended up calling me and asked what was going on. I told her that the doctor on call stated there was nothing she could do until morning. My doctor stated...."Yes, she can. Her job is to control your pain. You have a hole in your mouth!" She was incredibly angry.
The doctor on call finally came back in and asked if I had ever been on a PCA before. I had. A PCA is a device that administers pain medications intravenously. So for me, every ten minutes I could push a button and it would admister a dose of pain meds. This is convenient because it does not require me to wait for a nurse to bring pain medications and I can make sure that my pain is adequately controlled. It was strange because she could not give orders for pain meds to be given every two hours but then she went ahead and ordered a PCA? It was so contradictory. At least I was starting to get some relief from the pain. At this point it was midnight, and for about five hours I was fighting with doctors and nurses, calling my doctor and my mom, crying intermittently....I should have been resting comfortably, but instead, I was having to take control of my treatment.
I was wondering what another patient would have gone through if they had this happen. I am always very aware of what medications I need and what my treatment should be. I am educated and having lived with this disease for so long I am the expert on my condition. I had to advocate for myself in order to get what I needed. If you are not an active participang in your own treatment you may find that you do not get what you need. I was proud of myself because I used to be the type of person that would just sit and not want to ruffle feathers. I would say that everything was fine and just wait until things were sorted out. However the experiences of living with this disease has taught me that at times I have to be the one to speak up and state my needs.
I had asked for Xanax because the high doses of steroids were causing severe anxiety, heart palpitations and anger. The steroids in combination with the stress of the situation was seriously causing a panic attack. The nurse would not give me Xanax because it was not "ordered." The nurses and doctors all told me that I could have any of my at home meds, and this is one of them. Yet they denied it to me. I managed to do some deep breathing and calm myself down and get a couple of hours of sleep. I wanted to go home so badly. My mother was so angry and felt helpless because she was at home. She was ready to pick me up the next day and sign me out and take me to Edward. However, if I sign the form that releases me AMA (against medical advice), then my insurance would not pay for the treatment. I was stuck there. I felt like I was in prison.
The next morning, things started getting a little better. I was still in such pain and was feeling awful, but at least the doctors that were on my team started making sure I received the medications I needed. I was getting 40mg of IV steroids every 6 hours. I went into the hospital on Saturday, so at this point it was Sunday. I started talking with the woman who shared a room with me. We actually talked a lot throughout my time there, which helped. You never know who you may be placed with. In the past I have had some interesting roommates. That's why I prefer Edward Hospital, because you get a private room. I read a few books to pass the time. I talked on the phone a lot to get support. I was so lonely and wanted to go home so badly but I knew that I needed treatment in order to feel better. So I sucked it up and dealt with it. There was not much I could do about it. It was difficult. I hate being in the hospital so often.
I finally started feeling tons better and the ulcers were steadily improving. By Monday morning I was informed that I could be discharged that afternoon. I was so excited. I couldn't wait to get out of there. The steroids were making me feel so much better. I had tons of energy and my pain had decreased immensly. My mom and sister picked me up and then I was able to go home.
I was so SO HAPPY to be back home with Bella and Chase (dog and cat) and my mom. It had been such a difficult couple of weeks with being in the ER for one day, a four day stay at Edward, and then another three days in UIC. Upon coming home I was able to drink water and eating was easier. By Wednesday and Thursday the sores were gone! I couldn't believe it! I felt perfect! It has been probably at least six months to a year since I had a day like that.
It makes me wonder what it would be like to feel this good all the time....or even half the time. I had forgotten what it was like to feel normal....to feel healthy. To feel no pain and have energy and everything. Words cannot express how amazing it felt! But it is also bitter sweet, because in the back of my mind I wonder when the shoe will drop...When will the sores resume? How long will I get to feel that good? Sure enough, now the sores started coming back.....Even on steroids! It's quite frustrating. I just have to take it one day at a time. I am thankful for the time that I do have that is pain free, or even just reduced pain. I have a good attitude and that is something that I can control!! I know this sounds bad, but I hear people complaining about the silliest things. And it makes me so angry inside because I know what I have to deal with every day, and to hear someone complain about something so small frustrates me. I wish these people could live a week in my shoes to see what it is like to deal with a chronic illness. It is so difficult. There are stressors constantly at play, interfering with my ability to function normally from day to day.
I know this was a long post...If you have made it this long, thanks for reading! It has been a rough few weeks. I am now starting a new medication called Cellcept, which is an immunosuppressant medication that is typically given to individuals who have had organ transplants. I hope that it works! It can cause weight loss, which I HOPE that it does....I have been continuously gaining weight from the steorids. I know it will go away but it makes it harder to deal with things because I feel so ugly and fat. Like many other medical issues, Behcet's Disease affects me on many levels...much more than just physically/medically. The emotional and psychological components are quite difficult to handle. That is what makes social support an integral part of treatment. Having people in my life who take the time to listen and understand what my life is like is something that I need terribly. Without this, life is isolating, lonely, scary. I retreat into a dark place where I am alone and feel like I am facing things on my own.
I am thankful for my mother, my siblings, my father, and my friends who have been so supportive throughout this difficult time. Thank you for listening and for your thoughts and prayers. It means so much to me that you think about me and what I am going through. Please let me know how reading these posts have affected you. I am interested in knowing if it helps you in any way to understand what chronic illness is like and how it can change one's life forever.
Take good care!
Mandi
No comments:
Post a Comment