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!!!
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