I'm so upset right now and need to get this out in the hopes that it will ease my mind a bit. I'm 33 years old but feel like I am stuck in the body of a 60 year old. I have lupus which has destroyed my body between the actual disease and the meds hoping to keep me healthy. I have a heart murmur, hiatal hernia and hemroids, along with just having my bladder put back up into my boday. The only health thing that makes me feel like I am my age is having my tubes tied on Monday but even that is due to this stupid disease.
While meeting with the surgeon, she told me that after doing this very routine surgery over a 1000 times she has never seen anyone hemorrage as much as I did. Thanks body...just what I needed. Now to top it all off, I had to go back to the hospital again last night. I thought I had the stomach flu that has been going around but called my surgeon to let her know and she wanted me to go to the ER to make sure all was OK. While at the ER, they discovered that I don't have the stomach flu but some oppurtunistic infection that is usually seen in older patients and in nursing homes. I guess because of the surgery and my immune system being compromised the bacteria decided I would be a great host...once again my body couldn't do anything about it. I'm now on heavy duty antibiotics to try and get rid of it.
I'm married to a wonderful, energetic, loving 33 year old man who should have a wife that matches him and instead he is stuck with a woman that is basically an old lady. I know that my life and health could be much worse but I feel so betrayed by my body. Why can't it fight to let me go through a routine surgery without complications? Is it going to let me live a full long life or is it going to betray me again before I'm ready? Please body, figure this out and let me go back to living my life the way that I want to!!!!
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Hi--I am a very sick Lupus Mom too! I have two beautiful children who are now teenagers. Young though 14 and 12. I have never talked to anyone about my illness. I have always had a wonderful but demanding career. I had 10 major surgeries on my joints during that time and, was married,children, new home. Like everyone. I had a brain injury (stroke) Oct.4, 1998, four months after my 2nd child. Now after I had worked all of my 20's and most of my 30's not only did my body betray me but now my brain. My doctors put a port-a-cath in my upper right chest and started chemo-therapy. Cytoxin, IVIG, narcotics,zofran, and benedryal. Infusions lasted 9hrs at a time every three weeks for six months. Three months off then six months on. During this time, my husband could not handle it and started drinking. My family could not handle it and would not help with my children. My company stood by me. No one could stand that I was so sick and wasn't capable of me taking care of them anymore. So I was left with my illness, lost my home, my car, I was scared to death. I did have two gifts from God who got me throught and still due to this day. They are amazing souls and I am blessed to be their mother. I am still very sick and need more surgery this year including my eyes. I am going blind from the steriods I have been on all my life. I am never going to get my "rock star" life back. All the traveling, the limo's, creating new products for babies, or working trauma medicine in NYC/LA. I know I am always going to be in alot of pain. I know I will not live long and that will hurt them so badly. Deep breathe.......My daughter gets so angry when I am sick. My son just cries. The emergency room is so familiar. I have been hospitilzed for at least 6to7days more then 4x this year. Wow this isn't good for me. It is making me feel hopeless and selfish. Guily too. I admire all of you who can do this Chemotherapy does work for me but I have found no doctor willing to do it on the east coast. On a cheery note we are moving back to southern california where at least I have found more progressive doctors. I am sorry if I was a downer. I quess that is why I don't share and keep to myself now.
ReplyDeleteTake care
Just remeber what Father Gudio Sarduccii said on Saturday Night Live!
ReplyDelete"It does not matter how you feel, it is how you look that matters!"
It's shallow, but yeah whatever works and it makes me laugh. Just a thought.
I am so very sorry to hear how sick you are and how much you have been through. This is a HORRIBLE disease who steals our lives away from us a little at a time. You are definitely not being a downer...that is why I right this blog to find other people who are like me and can relate. Please know that you will be in my prayers and thoughts.
ReplyDeleteI also tend to try and make myself look better but then get annoyed when people tell me how good I look even though I feel like crap!!!!
Oh no sorry to hear you are so sick! Im batteling lupus too! Hope you get better asap! Im a new follower of your blog!
ReplyDelete