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My journey with Ulcerative Colitis (UC) really started about 8 years ago when I was diagnosed. For a long time I really didn’t know the full extent of what UC meant. For about 6 years of my disease I had it easy, I would have 3 or 4 flares a year lasting only a few weeks and only consisting of having bad cramps and bloody diarrhea maybe 7 or 8 times a day. I didn’t know how bad it could get. Well about 2 ½ years ago I was blessed with having my first child of my own a handsome baby boy. So now our family consisted of my husband, my step daughter (who we have full time) and my son. Things were great until about 2 months after the birth of my son. I started having a flare of my UC, but this time it was different. It wasn’t just several bloody stools a day, I started having fevers, joint pain and swelling, nausea and vomiting. I was miserable. I thought something else had to be wrong, so I went to the Dr. and they said these are all symptoms of my UC. I was breast feeding at the time so my treatment options were limited. I was put on steroids along with my usual medications. Months went by and things just got worse. I had my knees swell up to the size of grapefruit, they were so painful I couldn’t bend them. I would cry because it hurt so bad. I can handle pain, I had a totally natural childbirth and I’d rather do that a million times then the pain I’ve experienced from my UC. There I was with a newborn that I was too sick to care for. He would be crying in his crib and I would be stuck on the toilet, unable to walk to him. I would poop myself trying to change his diapers. I started getting really depressed. I landed in the hospital for the first time when he was 6 months old. I had to have a blood transfusion because I had lost so much blood through my stools, I had several antibiotics because I was almost septic (I had a fever of 104 for several weeks before I went in, because I knew we couldn’t afford it). I needed IV fluids, nutrition and steroids. After about a week I was released. I felt good for about 2 weeks and then everything started again. For the next two years I have been in and out of the hospital, each time needed the same things, blood, fluids, nutrition, antibiotics and iv steroids. My kids started to get used to mommy being in the hospital. Every time i was there it made me cry that I couldn't kiss them goodnight. For 2 years I lived with fevers everyday ranging from 99-104, there wasn’t a day of my life I didn’t have a fever. I longed to feel normal again, but honestly forgot what it felt like. I had bloody diarrhea 15 to 20 times a day, getting up hourly through the night to go as well. I was sleep deprived and very sick. Along with that I would have flares of joint pain and swelling, nausea a vomiting, skin rashes and just plain exhaustion. Over the course of a year I lost 110llbs putting my lowest weight at 108llbs, which is way too low for me! Over the last 2 years I've struggled to keep weight on despite being on high doses of prednisone. Through all of this I was still working a full time job because I had no other choice. We were barely making ends meet as it was there was no way I could stop working. I didn’t want to loose our house, I didn’t want my family to be homeless. It was all I could do to work. I would literally sleep during my breaks and just barely make it through the day. There were times I was throwing up in the trash in between seeing people, to be honest there were times I was having to use the trashcan to have diarrhea in because I couldn’t make it to the bathroom. I know that’s gross but it was that or poop my pants at work, which I also did on several occasions. So there I was, just a miserable person, a 33 year old pooping her pants, running a fever and being a shell of a person I used to be. My kids don’t remember a mom that could do anything but lay in bed. I would use what little energy I had to work, so I could provide for our family (my husband already picking up as much overtime as he can) that when I was home all I did was sleep, I couldn’t even make my kids dinner. I hated my life. I never wanted to go to the hospital because I knew that just meant more bills and it never made me feel better for long. Well after 2 years of battling this disease I found out it had started affecting my heart. My last hospital visit they discovered I have a second degree heart block. That was it! I had to do something this disease was taking my life away and now it was killing me! It led me to having surgery. I got my colon out and have a colostomy bag, which is the first of 3 surgeries I’ll have over the next year. We had to move into my dad’s house because we couldn’t afford ours anymore. We’ve rented it out. So now a family of 4 is living in a one bedroom basement apartment. We are thankful to have a place and the help. But now all the hospital bills are piling up, I’m not able to work. I’ll be out of work for 3 months due to the surgery, I’ll be able to go back for about 2 months but then I’ll be out again for another 3 months for the second surgery and same for the third. I don’t have vacation time and the company is too small to qualify for FMLA, so I'm not brining in much. I’ve made too much this year to qualify for any government assistance, even though I’m not working now. I’m stuck. I have to have these things in order to get better, but then we are drowning in debt because of it. We’ve sold clothes, furniture, toys, electronics, pretty much everything we can sell we have but it’s still not enough. My kids never get anything new from us its garage sale and thrift store school clothes. husband is working as much as he can. I’m finally on the road to recovery after 2 long years. I'm so thankful for what we do have. I'm finally going to be able to be a real mom that can take her kids to the park, a real wife that can stay awake long enough to watch a movie with her husband, a real part of the family. I will finally be able to cook dinners for my family and play with my kids. I’m so thankful for that. I’m thankful for a brighter future, but I’m scared what it’s costing. At this point we will never be able to afford to buy another house, my health has made us poor. I need help. I’ve gone to the hospitals and we are considered middle class, we just don’t qualify. If my husband didn’t work so much then we might, but he has to. We have student loans, bills, debt. We don’t have money left over at the end of the week, our paychecks are spent before they are paid, but we are still not poor enough to get help. I’ve never asked for help from anyone before, but I’m asking now. We can’t afford my sickness. We can’t afford the numerous hospital stays we are still paying on, let alone the future surgeries I must have. I’m asking for help as a mother, a wife and just simply a person that needs to get better. Thank you for anything you can do.
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