I am thrilled to announce a few things that I am currently working on. First, I know that you may have noticed I have shared a couple stories of other people who also suffer from BD. I think that it is so important to share these stories for a variety of reasons. Everyone deserves to have their story heard and to have a voice. Also, as you all know, not every case of BD is the same. So just because I have certain symptoms and issues does not mean that you can fully relate. Other people may have more similar issues and therefore it may give you ideas about potential treatments, coping techniques, etc. I think it's so important for all of us to reach out to one another and to make as many connections as we can, so this can help with that. So I am in the process of getting stories from some individuals whose stories I believe are super inspiring. I look forward to sharing them with you, and I hope you are excited to read them as well!
I am also FINALLY starting my book. I have wanted to write a book about my life with Behcet's Disease. I have put it off for a while but it is time to start the ball rolling. In addition, I am wanting to get into motivational speaking and have made some contacts that may facilitate this process. I am so happy about these upcoming projects! I may be seeking your advice about what kinds of things you want to hear about in the book...... So look out for those posts!
Monday, September 2, 2013
Cadaver skin ..... and more
I have been really impressed with how my cadaver skin is taking. I did not know what to expect from this procedure. To be totally honest, I did expect to be completely grossed out. I am not at all grossed out by the look of it. I would share a picture, but I don't want those who are uncomfortable seeing it to have to look at it. If you are interested in seeing what it looks like, please email me and I will send you a picture. You can email me at mandifessler@gmail.com.
I return to the wound care specialist tomorrow for another follow up visit. I have not been there since last Tuesday. Initially they wanted me to come twice a week so they could monitor it and change the wrap/bandages. But since they checked it last Tuesday and there was very little drainage, they decided that I could go an entire week before coming back. They were so pleased with how it looked. I cannot recall whether or not I have posted how well the skin was taking....If I have already updated, please forgive me.
Dr. Ennis, my amazing wound care doc in Chicago, was incredibly pleased by how fast the skin was taking. There are two spots where my skin has already begun growing through. Since I was on high dose steroids, I was a perfect candidate because being immunosuppressed will allow my body to refrain from rejecting the skin. Instead, it will accept it as my own and speed up the healing process. It's so interesting how this all works. I had to decrease my steroids, but I am also now back on Cellcept so that is still an immunosuppressive medication.
Speaking of steroids....I was gaining SO much weight that my doctor took one look at me and was completely shocked by how much weight I had gained in such a short period of time. I have gone from 200 to 238 in the past few months. My face and chin are SO incredibly swollen. It is difficult to breathe because of how bloated and swollen my stomach is. A typical taper includes decreasing my dose by 2.5mg every two weeks. But my rheumy, Dr. Sweiss, told me to go from 40 to 30mg for two days....and then from 30 to 20mg. I have remained on that dose for the past week and have increased my cellcept to two pills (1000mg) a day. I have noticed a difference in the decrease in steroids for many reasons, some good and some bad. I think I have lost weight and I can breathe again.... I am not as hungry as I was. But I feel totally terrible. Whenever I decrease my dose I feel so horrible, like I have the flu, everything aches, feel like I have a fever, etc. I hope to be off Prednisone in the next few months for good. I have to get off of it and STAY off of it. I need to find an alternative to this horrible medication. The weight gain has been so terrible. I have gained a total of 113 lbs. I cannot believe it. I know appearances are not everything, but I don't even recognize myself when I look in the mirror. I feel disgusting. I want my body back. It's bad enough that I have to be in such pain and fatigue all the time. To also have to cope with body image issues on top of everything else just exacerbates this vicious cycle of declining psychological and physical health. I have had people tell me that it's stupid to worry about this and that I am being "pretentious." I just want to look like me again. I am not wanting to look like some supermodel nor am I wanting to look like some perfect person. I just want MY body back. It's all part of wanting some semblance of normalcy.
I could go on and on about that topic, but I can discuss that at a later date. Thanks for reading, as always. I hope you are all feeling well, and praying for your remission!
I return to the wound care specialist tomorrow for another follow up visit. I have not been there since last Tuesday. Initially they wanted me to come twice a week so they could monitor it and change the wrap/bandages. But since they checked it last Tuesday and there was very little drainage, they decided that I could go an entire week before coming back. They were so pleased with how it looked. I cannot recall whether or not I have posted how well the skin was taking....If I have already updated, please forgive me.
Dr. Ennis, my amazing wound care doc in Chicago, was incredibly pleased by how fast the skin was taking. There are two spots where my skin has already begun growing through. Since I was on high dose steroids, I was a perfect candidate because being immunosuppressed will allow my body to refrain from rejecting the skin. Instead, it will accept it as my own and speed up the healing process. It's so interesting how this all works. I had to decrease my steroids, but I am also now back on Cellcept so that is still an immunosuppressive medication.
Speaking of steroids....I was gaining SO much weight that my doctor took one look at me and was completely shocked by how much weight I had gained in such a short period of time. I have gone from 200 to 238 in the past few months. My face and chin are SO incredibly swollen. It is difficult to breathe because of how bloated and swollen my stomach is. A typical taper includes decreasing my dose by 2.5mg every two weeks. But my rheumy, Dr. Sweiss, told me to go from 40 to 30mg for two days....and then from 30 to 20mg. I have remained on that dose for the past week and have increased my cellcept to two pills (1000mg) a day. I have noticed a difference in the decrease in steroids for many reasons, some good and some bad. I think I have lost weight and I can breathe again.... I am not as hungry as I was. But I feel totally terrible. Whenever I decrease my dose I feel so horrible, like I have the flu, everything aches, feel like I have a fever, etc. I hope to be off Prednisone in the next few months for good. I have to get off of it and STAY off of it. I need to find an alternative to this horrible medication. The weight gain has been so terrible. I have gained a total of 113 lbs. I cannot believe it. I know appearances are not everything, but I don't even recognize myself when I look in the mirror. I feel disgusting. I want my body back. It's bad enough that I have to be in such pain and fatigue all the time. To also have to cope with body image issues on top of everything else just exacerbates this vicious cycle of declining psychological and physical health. I have had people tell me that it's stupid to worry about this and that I am being "pretentious." I just want to look like me again. I am not wanting to look like some supermodel nor am I wanting to look like some perfect person. I just want MY body back. It's all part of wanting some semblance of normalcy.
I could go on and on about that topic, but I can discuss that at a later date. Thanks for reading, as always. I hope you are all feeling well, and praying for your remission!
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