This is the 5 year anniversary of being back in Illinois, being pretty much bed ridden due this being the sickest I have ever been, and feeling so unproductive.
In addition to the physical aspects of this disease, the psychological components are equally challenging to cope with. I feel like I so lazy and useless. I went from being at the top of my class and graduating with a doctorate. I joined a private practice for postdoc, and was on my way to a successful career and the life that I had planned out for myself. Then BD reared it's ugly head. And off the beaten path I go. I feel so lost. I don't think I will ever find my way back. But that's probably not what's supposed to happen anyway. I think the whole point is for me to forge a new path, a new journey and to find a new purpose in life. Let me tell you how difficult that has been. I am thankful to have found all the new friends because of this disease. I really want to start my book, which I have been saying for the past three years so I need to get on that. I think that once I start that I will feel like I am actively doing something. I need to do something that I know will ultimately help someone. That's why I got my degree in psychology-to help others. I have been talking to my friend BJ quite a lot (shout out girl!!) and feel so blessed to have connected with her. We laugh so much and it's so healing. We are able to discuss everything from our symptoms (some of which may be awkward at times) to anything else..... it's like once you open that gate and realize the other has BD, there is an instant connection and you feel like you can talk to that person about almost anything!!! She knows what I am going through since she has been bed ridden for a similar amount of time so she feels the same way. It's nice to have her as a sounding board and we are able to motivate each other and push one another toward greatness. We cannot allow one another to give up.
I just can't believe it's been 5 years. I am approaching 35 years old....I need to get my butt in gear and start doing something that will allow me to make a difference. The hardest part of this whole process has been accepting myself for who I am with this disease. It has totally disfigured my body because of the steroids. It has changed my personality.....I no longer recognize myself. I need to do something that will allow me to accept myself and feel whole again. I feel like I am broken into little pieces scattered on the floor. Time to pick myself up again and put the pieces of my life back together.
Saturday, February 1, 2014
Upcoming Treatment
So this new year brings new, and hopefully successful, treatments. I am starting Lanilomide soon, which is a derivative of Thalidomide. Shortly after that I hope to get a stem cell transplant. I read an article that stated that stem cell transplants are going to be "the treatment" for BD. Let's pray that we can find a way to fund this super expensive treatment. I hope that my rheumy can find grant money to utilize it for research since I have a severe case of refractory behcet's disease. Lucky me!
I had a horrible skin ulcer on the lower quadrant of my left leg...I guess one would call that an ankle.....Lol. I am happy to report that after a long 9 months it has healed!!! It has left a nasty battle wound that looks quite similar to a burn scar, but it is no longer a yucky open wound. Every once in a while it will hurt a bit but I attribute that to nerve pain. I have a few small skin ulcers. I also have really bad throat ulcers and mouth ulcers. My INR has been fluctuating like crazy so I have been unable to get my oral surgery. Therefore, we have had to adjust my Coumadin doses every couple of weeks. I have been suffering from terrible fatigue. I can barely walk for a few minutes without feeling the exhaustion. It's so hard because I used to be so active. I feel lazy, but then remind myself that it's the disease and not me. Still hard to come to terms with.
I hope this year will be a great year for myself and my fellow BD friends!!!!!!
I had a horrible skin ulcer on the lower quadrant of my left leg...I guess one would call that an ankle.....Lol. I am happy to report that after a long 9 months it has healed!!! It has left a nasty battle wound that looks quite similar to a burn scar, but it is no longer a yucky open wound. Every once in a while it will hurt a bit but I attribute that to nerve pain. I have a few small skin ulcers. I also have really bad throat ulcers and mouth ulcers. My INR has been fluctuating like crazy so I have been unable to get my oral surgery. Therefore, we have had to adjust my Coumadin doses every couple of weeks. I have been suffering from terrible fatigue. I can barely walk for a few minutes without feeling the exhaustion. It's so hard because I used to be so active. I feel lazy, but then remind myself that it's the disease and not me. Still hard to come to terms with.
I hope this year will be a great year for myself and my fellow BD friends!!!!!!
Dedicated to Kristi Dalby, my dear Behcet's friend and sister....
I cannot believe that it's been so long since I've written. I guess I have been in a slump....kinda down in the dumps lately. This disease just drags you down like a weight attached to your limbs. Every day it gets heavier and heavier. Eventually you find that you cannot even lift anything anymore so why bother.
But fight on we must.
My dear friend, Kristi Dalby, has been in the hospital and is very ill. She also has Behcet's Disease. She is very immunosuppressed, is septic, has various infections, may have encephalitis, etc etc etc. She is so sick. She said numerous times she feels as though she is dying. She's not one to throw that phrase around lightly. She is such a strong and tough woman who has been fighting for a long time. I actually have this blog to thank for bringing us together. She accessed my blog and sent me an email and we became instant friends, contacting each other daily ever since. That was over a year ago. The thing about chronic illness is it is so difficult for those who are healthy to truly grasp what it is like to be sick every day. So to have friends who know EXACTLY what you are going through is such a blessing. I am lucky to be a part of a Women with Behcet's Group on Facebook. It's such an amazing group of women who all share similar experiences with this terrible debilitating disease. When one of us hurts, we all hurt. So for Kristi to be in the hospital so sick, hurting so much right now....I feel helpless. It's interesting. I guess I feel how my family and friends feel in my life when they see me in pain and are unable to do anything to help me get better. But all you can do is provide support, pray, and love that person. And do anything they need. I have been thinking about her constantly, wondering what she is feeling right this moment. Wondering if she is okay. I have faith that she will beat this because I feel that there is enough strength between those of us who know and care for her...that this strength will lift her up and these prayers will reach God in such astounding numbers that He will have NO CHOICE but to help heal her. Her family needs her, her kids need her. We all need her.
It scares all of us to have someone we know get this ill, because we know this could be any one of us at any time. It's truly terrifying. I can't spend time thinking about it though. I just have to remain positive and talk to loved ones and seek social support. Does this mean I remain happy all the time? No way. I find that I withdrawal....I get depressed and cry and wonder when will this suffering end? But I will not give up this fight. I can't. There are too many people out there who are fighting and need inspiration. Every time you read someone's story about overcoming seemingly insurmountable obstacles it inspires me. I hope to inspire others in a similar manner. It's kind of like a pay it forward inspiration style! :) Please keep Kristi in your prayers. She means so much to me.
Thanks for reading! Hope you are all having a good start to 2014!
PS. You can read Kristi's story on the post published on 2/28/13.
But fight on we must.
My dear friend, Kristi Dalby, has been in the hospital and is very ill. She also has Behcet's Disease. She is very immunosuppressed, is septic, has various infections, may have encephalitis, etc etc etc. She is so sick. She said numerous times she feels as though she is dying. She's not one to throw that phrase around lightly. She is such a strong and tough woman who has been fighting for a long time. I actually have this blog to thank for bringing us together. She accessed my blog and sent me an email and we became instant friends, contacting each other daily ever since. That was over a year ago. The thing about chronic illness is it is so difficult for those who are healthy to truly grasp what it is like to be sick every day. So to have friends who know EXACTLY what you are going through is such a blessing. I am lucky to be a part of a Women with Behcet's Group on Facebook. It's such an amazing group of women who all share similar experiences with this terrible debilitating disease. When one of us hurts, we all hurt. So for Kristi to be in the hospital so sick, hurting so much right now....I feel helpless. It's interesting. I guess I feel how my family and friends feel in my life when they see me in pain and are unable to do anything to help me get better. But all you can do is provide support, pray, and love that person. And do anything they need. I have been thinking about her constantly, wondering what she is feeling right this moment. Wondering if she is okay. I have faith that she will beat this because I feel that there is enough strength between those of us who know and care for her...that this strength will lift her up and these prayers will reach God in such astounding numbers that He will have NO CHOICE but to help heal her. Her family needs her, her kids need her. We all need her.
It scares all of us to have someone we know get this ill, because we know this could be any one of us at any time. It's truly terrifying. I can't spend time thinking about it though. I just have to remain positive and talk to loved ones and seek social support. Does this mean I remain happy all the time? No way. I find that I withdrawal....I get depressed and cry and wonder when will this suffering end? But I will not give up this fight. I can't. There are too many people out there who are fighting and need inspiration. Every time you read someone's story about overcoming seemingly insurmountable obstacles it inspires me. I hope to inspire others in a similar manner. It's kind of like a pay it forward inspiration style! :) Please keep Kristi in your prayers. She means so much to me.
Thanks for reading! Hope you are all having a good start to 2014!
PS. You can read Kristi's story on the post published on 2/28/13.
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