I have been having horrible ulcers on my skin. Way more than what is typical for me. I had about 35 between both arms, and then about 5 or 6 huge ones on my legs. My left leg in particular has a sore that takes up my entire bottom portion of my calf. I have never seen anything like it, and neither has my doctors and others suffering with BD. I have been seeing a well known wound care specialist at UIC for the past two months. He has given me multiple different medications and wraps to promote healing and prevent infection. So far, it has been helping immensely. Also, they performed a technique called a debridement. This is where they numb up the area and use a scalpel to scrape off any dead tissue/skin that may be preventing it from healing. It wasn't bad. Tomorrow they are going to take cadaver skin and place it on the area using steri strips. It's similar to a skin graft but it's not a surgical procedure. Since I am on high dose steroids and am therefore immunosuppressed, the hope is that my body will not reject this skin as foreign and will accept it as my own and use it to promote healing and reduce scarring. I am afraid, not for the pain because I don't think it will hurt. But instead it really, really grosses me out. I am very thankful for whomever decided they wanted to become an organ donor because this allows me to even get this procedure. But the thought of it makes me sick. I hope that I am able to stomach it.
I will update as things progress. Next week I also have two appointments, one with my rheumatologist and pain management doctor. And then I have oral surgery on Wednesday. I really want to get that over with. It's not going to be fun healing from that while having horrible mouth ulcers. Oh well, such is life with BD.
I have to say that I am so excited that I have found various "secret" groups on facebook that have members who are all suffering from Behcet's. I don't know why it took me this long to find it, but I am just lucky that I finally have. I have been connecting with SO many people who understand exactly what living with this disease is like. There are so many people with similar situations and it is nice to know I am not alone. I am creating some really great friendships throughout this process. Although this is not the means I wish us to connect, I feel blessed to have found the people I have. I hope to continue to meet others so that we can support one another and fight this lifelong battle. We will NOT let BD win.
Thursday, August 22, 2013
Friday, August 2, 2013
Behcet's, Behcet's, Behcet's
I cannot believe we are already more than halfway through the year 2013. I really thought this year would bring good things in in terms of remission and relief from my various medical problems. This has yet to be seen. I have literally been in the hospital about 12 times since January. I have not had one day without experiencing symptoms. I was taking Enbrel and Cellcept but it did not appear to be working. However, once I stopped (probably about a month or two ago) I started to get the WORST flare up to date. I had so many mouth ulcers that covered my tongue, roof of my mouth, and all down my throat. Additionally, I got the most skin ulcers I have ever had. I think I have about 30 on my arms alone. I have one huge ulcer on my left lower calf that is actually three ulcers right next to each other. Combine they are the size of a baseball or a little larger. I went to a wound specialist and have been there three times. I just went today and they performed a procedure called a debridment where they numb the area and scrape off dead tissue with a scalpel to promote healing of the wound. For the past three weeks I have had to change the dressing daily. I apply pain medication cream, then this dressing that is made out of seaweed called calcium alginate. I top that with a non stick gauze covered with vasaline (which I decided to do on my own, and it ended up helping immensely). I wrap my leg with a gauze wrap and then an ace bandage. It has been so hard to have my leg wrapped up during this heat. But the wound is healing much faster than I anticipated, so no complaints.
I also have about 6 other large sores on my legs the size of quarters. During the first three weeks these ulcers hurt so incredibly bad. They burned and stung to the point that I was in tears. I had increased my steroid dose to 60mg, and am now down to 40mg. The side effects are horrendous. The weight gain, sweating, anxiety, heart palpitations, mood swings, anger, etc. I even continue to get new mouth and skin sores despite the high dose steroids. I have been on antibiotics for two weeks.
I was supposed to get oral surgery in early February because I need two teeth extracted as a result of decay from the Actiq medication. I have been unable to have the surgery because I have been so ill ever since. I literally have not gone one day without horrible mouth ulcers. This past Sunday I started getting intense pain in one of the teeth that needs extraction. My entire jaw, ear, and head was throbbing. I noticed that more of the tooth had chipped off....It's the very last tooth on the lower left. The root is undoubtedly exposed. I went to the oral surgeon a few days ago and scheduled surgery for August 28th. He told me that it could kill me should the tooth get infected, which I was already aware of. But it's so hard because there is so much going on with my disease that there is like a domino affect. One problem causes another which leads to another and so on. It is so frustrating that I can't get a break from anything. I will start feeling a little better to the point where I get excited, and then every time something else happens. I am trying so hard to stay positive. I know this is a test of my strength and character so I remind myself that I need to hold onto the optimism and hope, even if it is small. I refuse to give up and let this disease beat me. I often receive comments from people stating that they are so impressed that I am positive and have a good attitude and they ask me how I do it. I honestly don't know how I do it. I just know that life is short and despite the fact that things royally suck for me most days, this is my life and it's the only one I will get. I do have a choice. I can choose to stay positive and happy and make the best out of every situation. Or, I can choose to be pessimistic, giving into the dark depression and isolation that accompany diseases like this. Don't get me wrong, this does not mean that I am happy every single day. I have days where I cry, am sad, have a pity party, wonder why this has to happen to me, etc. I yell and scream and get frustrated. But these emotions are fleeting and temporary. I remind myself that things could be worse and I am lucky to be alive. But I miss working terribly. Being a Child Psychologist was my life dream and passion. I want to be able to work again, even if it is just part time.
I have met some wonderful people that have contacted me through this blog. It has been so nice to have people to talk to who have firsthand knowledge of what it is like to live with Behcet's Disease. Having that kind of support has helped me greatly. Words cannot express how blessed I am to have those people in my life now. It is difficult because I really don't have much social support. I don't have people coming to visit, bringing me meals, etc. I do have some wonderful friends but the majority of them live out of state but I love that I can talk to them on the phone. I know it can be difficult for others to hear what I am going through, but I am thankful to have people to talk to. I just wish some people in my life would become a little more supportive and offer to do things to help. Living with a chronic illness, especially one that is extremely rare, is an incredibly isolating journey. I have learned so much about myself and how strong I truly am. It is my goal to help others....whether it be people who are suffering from Behcet's, other medical problems, mental health problems, or just life challenges in general. I have always felt that my place in the world is cemented in the role of assisting others. I hope that I am able to help others by sharing my story. I am going to begin writing a book that I hope to get published. As always, thanks for reading. And please comment or contact me if you have any questions or need anything. Take good care!!!
I also have about 6 other large sores on my legs the size of quarters. During the first three weeks these ulcers hurt so incredibly bad. They burned and stung to the point that I was in tears. I had increased my steroid dose to 60mg, and am now down to 40mg. The side effects are horrendous. The weight gain, sweating, anxiety, heart palpitations, mood swings, anger, etc. I even continue to get new mouth and skin sores despite the high dose steroids. I have been on antibiotics for two weeks.
I was supposed to get oral surgery in early February because I need two teeth extracted as a result of decay from the Actiq medication. I have been unable to have the surgery because I have been so ill ever since. I literally have not gone one day without horrible mouth ulcers. This past Sunday I started getting intense pain in one of the teeth that needs extraction. My entire jaw, ear, and head was throbbing. I noticed that more of the tooth had chipped off....It's the very last tooth on the lower left. The root is undoubtedly exposed. I went to the oral surgeon a few days ago and scheduled surgery for August 28th. He told me that it could kill me should the tooth get infected, which I was already aware of. But it's so hard because there is so much going on with my disease that there is like a domino affect. One problem causes another which leads to another and so on. It is so frustrating that I can't get a break from anything. I will start feeling a little better to the point where I get excited, and then every time something else happens. I am trying so hard to stay positive. I know this is a test of my strength and character so I remind myself that I need to hold onto the optimism and hope, even if it is small. I refuse to give up and let this disease beat me. I often receive comments from people stating that they are so impressed that I am positive and have a good attitude and they ask me how I do it. I honestly don't know how I do it. I just know that life is short and despite the fact that things royally suck for me most days, this is my life and it's the only one I will get. I do have a choice. I can choose to stay positive and happy and make the best out of every situation. Or, I can choose to be pessimistic, giving into the dark depression and isolation that accompany diseases like this. Don't get me wrong, this does not mean that I am happy every single day. I have days where I cry, am sad, have a pity party, wonder why this has to happen to me, etc. I yell and scream and get frustrated. But these emotions are fleeting and temporary. I remind myself that things could be worse and I am lucky to be alive. But I miss working terribly. Being a Child Psychologist was my life dream and passion. I want to be able to work again, even if it is just part time.
I have met some wonderful people that have contacted me through this blog. It has been so nice to have people to talk to who have firsthand knowledge of what it is like to live with Behcet's Disease. Having that kind of support has helped me greatly. Words cannot express how blessed I am to have those people in my life now. It is difficult because I really don't have much social support. I don't have people coming to visit, bringing me meals, etc. I do have some wonderful friends but the majority of them live out of state but I love that I can talk to them on the phone. I know it can be difficult for others to hear what I am going through, but I am thankful to have people to talk to. I just wish some people in my life would become a little more supportive and offer to do things to help. Living with a chronic illness, especially one that is extremely rare, is an incredibly isolating journey. I have learned so much about myself and how strong I truly am. It is my goal to help others....whether it be people who are suffering from Behcet's, other medical problems, mental health problems, or just life challenges in general. I have always felt that my place in the world is cemented in the role of assisting others. I hope that I am able to help others by sharing my story. I am going to begin writing a book that I hope to get published. As always, thanks for reading. And please comment or contact me if you have any questions or need anything. Take good care!!!
I'm Back....
I apologize sincerely for my absence for the past few months. So much has been going on and it has been difficult to carve out some time to sit down and really concentrate on writing a post.
First off, I had to put my kitty Chase to sleep. He was very sick and was hospitalized around the time of my birthday in early June. After a week in the hospital he was sent home with a feeding tube. He had gall stones and was unable to eat due to severe nausea. He responded well to the treatments. A few weeks later he was sick again. They gave him prednisone, antibiotics, anti nausea meds, etc. Again, he responded very well to the meds. He was better within a few hours, Approximately a month later, which brings us to mid July, he suddenly started vomiting violently, was unable to walk due to pain, and was extremely lethargic. I just knew that this was it. Prior to taking him to the vet I told Bella (my dog and Chase's best friend) that Chase would most likely not be returning home. I remember laying next to him on the floor petting him and just crying, telling him it's okay to stop fighting. I knew he was suffering and it was just a matter of time before he was sick again. Each treatment was just a band aid. Sure enough, when I took him to the vet they told me that they could give him more meds but that since he was in excruciating pain it was probably evident that his gall bladder was about to rupture. The vet was confident that the end was near and she would not have been surprised if we were back within 12 hours. So I made the difficult decision to end his suffering. It was the hardest thing I have EVER had to do. My mom and I stayed in the room while they administered the medication to put him to sleep, not entirely, but the ketamine which is just like anesthesia. I could not handle being present while they pronounced time of death. He was on a lot of pain meds so he was very out of it. I just held him and told him how much I loved him, how wonderful he was, how much joy he had brought me in my life. He was there during the most difficult times of my life....When I started getting ill with Behcet's, moving from Arizona to California for internship, and then back to Arizona again. And then the move from Arizona to Illinois to live with my mom. He developed a strong connection with my Mom over time. It is so hard to think about him. Bella was immediately depressed and could sense something was different. She wasn't eating the days following, wouldn't bask in the sun, wouldn't do much of anything. I would find her searching the house for him. I knew I wanted to get another kitty but didn't anticipate getting one soon. However, I saw this kitty at PetSmart through Purrs Naperville. She was 10 weeks at the time, she is a tabby/tortie, and the best part....she's polydactyl, meaning she has extra fingers. She has thumbs on both of her front paws. She is absolutely beautiful. Her and Bella instantly hit it off, she started giving me kisses right away. It just felt like it was meant to be. I brought her home and she immediately fit right in. It feels like she has been here forever, it's only been three weeks. She is very crazy, hyper, clumsy, happy, and just brings a new energy in the house. Bella is no longer depressed and neither am I.
It's funny. As much as I miss Chase, and I always will, I have to admit I was a little shocked at the way I reacted to the whole situation. Since he was sick and there was no cure for his illness, I was constantly worried and stressed wondering when the time would come that he would no longer be able to go on. After I walked out of the vet that day, although I was balling my eyes out, I felt a huge weight lifted off my shoulders. It was a relief to know he was no longer suffering and that I did not have to stress about it. I was very depressed and in mourning that weekend. I got Khloie, the new kitty, on Sunday. Some people disagreed with my decision to get a new kitty so quickly. Everyone experiences things differently. This just felt right for me. I have so much love to give and since I am home alone all day it helps to have the animals around. Plus it takes my mind off my illness. It was like I had hope all over again. I started sleeping at night and not all day. I became more active, doing things around the house and just overall in a better mood. My mom even noticed stating that I had my fight back. I without a doubt believe I made the correct decision.
Animals have an amazing ability to help people throughout various life challenges, specifically medical or mental health issues. Their unconditional love and support is extremely therapeutic. I strongly encourage people to adopt a pet if they are struggling with any type of illness. The memories and the experiences that they provide are priceless.
First off, I had to put my kitty Chase to sleep. He was very sick and was hospitalized around the time of my birthday in early June. After a week in the hospital he was sent home with a feeding tube. He had gall stones and was unable to eat due to severe nausea. He responded well to the treatments. A few weeks later he was sick again. They gave him prednisone, antibiotics, anti nausea meds, etc. Again, he responded very well to the meds. He was better within a few hours, Approximately a month later, which brings us to mid July, he suddenly started vomiting violently, was unable to walk due to pain, and was extremely lethargic. I just knew that this was it. Prior to taking him to the vet I told Bella (my dog and Chase's best friend) that Chase would most likely not be returning home. I remember laying next to him on the floor petting him and just crying, telling him it's okay to stop fighting. I knew he was suffering and it was just a matter of time before he was sick again. Each treatment was just a band aid. Sure enough, when I took him to the vet they told me that they could give him more meds but that since he was in excruciating pain it was probably evident that his gall bladder was about to rupture. The vet was confident that the end was near and she would not have been surprised if we were back within 12 hours. So I made the difficult decision to end his suffering. It was the hardest thing I have EVER had to do. My mom and I stayed in the room while they administered the medication to put him to sleep, not entirely, but the ketamine which is just like anesthesia. I could not handle being present while they pronounced time of death. He was on a lot of pain meds so he was very out of it. I just held him and told him how much I loved him, how wonderful he was, how much joy he had brought me in my life. He was there during the most difficult times of my life....When I started getting ill with Behcet's, moving from Arizona to California for internship, and then back to Arizona again. And then the move from Arizona to Illinois to live with my mom. He developed a strong connection with my Mom over time. It is so hard to think about him. Bella was immediately depressed and could sense something was different. She wasn't eating the days following, wouldn't bask in the sun, wouldn't do much of anything. I would find her searching the house for him. I knew I wanted to get another kitty but didn't anticipate getting one soon. However, I saw this kitty at PetSmart through Purrs Naperville. She was 10 weeks at the time, she is a tabby/tortie, and the best part....she's polydactyl, meaning she has extra fingers. She has thumbs on both of her front paws. She is absolutely beautiful. Her and Bella instantly hit it off, she started giving me kisses right away. It just felt like it was meant to be. I brought her home and she immediately fit right in. It feels like she has been here forever, it's only been three weeks. She is very crazy, hyper, clumsy, happy, and just brings a new energy in the house. Bella is no longer depressed and neither am I.
It's funny. As much as I miss Chase, and I always will, I have to admit I was a little shocked at the way I reacted to the whole situation. Since he was sick and there was no cure for his illness, I was constantly worried and stressed wondering when the time would come that he would no longer be able to go on. After I walked out of the vet that day, although I was balling my eyes out, I felt a huge weight lifted off my shoulders. It was a relief to know he was no longer suffering and that I did not have to stress about it. I was very depressed and in mourning that weekend. I got Khloie, the new kitty, on Sunday. Some people disagreed with my decision to get a new kitty so quickly. Everyone experiences things differently. This just felt right for me. I have so much love to give and since I am home alone all day it helps to have the animals around. Plus it takes my mind off my illness. It was like I had hope all over again. I started sleeping at night and not all day. I became more active, doing things around the house and just overall in a better mood. My mom even noticed stating that I had my fight back. I without a doubt believe I made the correct decision.
Animals have an amazing ability to help people throughout various life challenges, specifically medical or mental health issues. Their unconditional love and support is extremely therapeutic. I strongly encourage people to adopt a pet if they are struggling with any type of illness. The memories and the experiences that they provide are priceless.
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