- Joined
- Sep 17, 2011
- Messages
- 1
I've lurked this site for a while, reading my life, yet never contributing my self. I never joined because I really don't have anything to add that someone else hasn't already said, lived through, or discussed. I kind of feel like I have nothing to contribute, so I am not sure that I should have joined. The only thing I feel that I have to say is to complain and no one likes a "Debbie Downer." I really do not want to gain haters from the start because of my "poor little pitiful" story. I'm not looking for pity. I just need to lay everything out, to people who have been there and who are there, with me. I do not have support in my "real" life and could really use a shoulder from someone who knows.
I really don't know where to start. Typing this is overwhelming. I don't want people telling me that they get belly aches too and I should just suck it up. I get enough of that in my real life. That is what has brought me here. People don't get it. Ugh! I'm sorry. I'm just gonna try to explain what I mean.
I was diagnosed with Chron's in 2007. It was a long battle because the docs acted like I was lying about bleeding out of my butt or that my poop was the consistency of water. I got pretty huffy with my doc when I was finally provided a colonoscopy (only to humor me, that's what I was told) and was then diagnosed. I was started on Pentasa and changed to Imuran. The Imuran made me sick as a dog. I would barf in my sleep. I couldn't eat anything and I dropped down to 129 lbs. I am 5'8 3/4" and looked like a skeleton. I was put on Prednisone in October of 2010 and started Remicaide in February of this year. I was tapered off of Prednisone in June (after a 70 lb gain...meh).
I also have a slueth of other medical problems. Let me see if I can remember everything:
Neuropathy- Finger tips are completely numb (possibly from an undiagnose B-12 deficiency)
Seizure disorder- Started having seizures in July 2009
Hashimoto's Thyroiditis- Diagnosed when I was in early 20's (My "first" medical problem)
Endometriosis- Diagnosed in December of 2005 when it caused a bowel obstruction- had part of ileum and all of cecum removed.
Osteoporosis- Long term steroid, birth control, and vitamin deficiencies
I have not worked since July of 2009. My body has just given out. I had a professional career and worked many hours. I moved back to my hometown to live with my parents. I am 35 and living with my parents. I have two brothers who live near by and this is my problem. My family does not believe that I do not feel well. They say that I look ok so I must be faking. It frustrates me beyond belief when they say that I am faking. How can I fake endometriosis that has strangled my bowel? How can I fake bleeding out of my butt? My Mom goes to all of my doc appointments with me. She actually goes into the exam room with me because she doesn't believe that I can be sick and look "fine." The thing is is that I don't look fine. It is my new "normal" to look like crap. I have dark circles under my eyes and when I feel really bad, my face turns red. But since I have looked this way for several years, it is considered "normal" to my family, so I must be fine.
I had a Remicade treatment yesterday and got really nauseated during the treatment. This is the first time this has happened. My Mom goes to the infusions with me. The nurse said I looked like I didn't feel well and said my face got really red. She got an order for Phenergan and I felt better. Mom said something about it must not have been that bad because I didn't actually throw up. REALLY?!?!?!
I don't want pity from my family. I just want them to understand that I don't feel well. I am not allowed to lay in bed or rest. There is always something to do around the house or someone needs something or I need to watch my niece. It's never ending. I feel really stiff today and wore out. I got into somewhat of an argument with my Mom because she wants me to clean the house today. This happens the day after an infusion, every time. I just don't get why no one understands that I don't feel well.
I went to the gyno this past Wednesday and they scheduled a hysterectomy for next Friday. I was not expecting that, but knew it was going to happen. My Mom says stuff like, "well, I always had periods too, so my endometriosis is bad too." She still has her uterus. My Mom is upset because I have never been married and I don't have any children. She is acting like this is my fault that I need a hysterectomy.
I guess I just don't like when someone minimalizes (is that a word, it is now) my feelings, pain, and what I am going through.
I'm rambling, I'm sorry. I'm just going to quit here. I thought about re reading this and editing, but I just don't have it in me right now. Thanks for letting me whine about my problems. I am aware that my situation is minute compared to others, I just needed to vent about my own situation.
Thanks for listening.
I really don't know where to start. Typing this is overwhelming. I don't want people telling me that they get belly aches too and I should just suck it up. I get enough of that in my real life. That is what has brought me here. People don't get it. Ugh! I'm sorry. I'm just gonna try to explain what I mean.
I was diagnosed with Chron's in 2007. It was a long battle because the docs acted like I was lying about bleeding out of my butt or that my poop was the consistency of water. I got pretty huffy with my doc when I was finally provided a colonoscopy (only to humor me, that's what I was told) and was then diagnosed. I was started on Pentasa and changed to Imuran. The Imuran made me sick as a dog. I would barf in my sleep. I couldn't eat anything and I dropped down to 129 lbs. I am 5'8 3/4" and looked like a skeleton. I was put on Prednisone in October of 2010 and started Remicaide in February of this year. I was tapered off of Prednisone in June (after a 70 lb gain...meh).
I also have a slueth of other medical problems. Let me see if I can remember everything:
Neuropathy- Finger tips are completely numb (possibly from an undiagnose B-12 deficiency)
Seizure disorder- Started having seizures in July 2009
Hashimoto's Thyroiditis- Diagnosed when I was in early 20's (My "first" medical problem)
Endometriosis- Diagnosed in December of 2005 when it caused a bowel obstruction- had part of ileum and all of cecum removed.
Osteoporosis- Long term steroid, birth control, and vitamin deficiencies
I have not worked since July of 2009. My body has just given out. I had a professional career and worked many hours. I moved back to my hometown to live with my parents. I am 35 and living with my parents. I have two brothers who live near by and this is my problem. My family does not believe that I do not feel well. They say that I look ok so I must be faking. It frustrates me beyond belief when they say that I am faking. How can I fake endometriosis that has strangled my bowel? How can I fake bleeding out of my butt? My Mom goes to all of my doc appointments with me. She actually goes into the exam room with me because she doesn't believe that I can be sick and look "fine." The thing is is that I don't look fine. It is my new "normal" to look like crap. I have dark circles under my eyes and when I feel really bad, my face turns red. But since I have looked this way for several years, it is considered "normal" to my family, so I must be fine.
I had a Remicade treatment yesterday and got really nauseated during the treatment. This is the first time this has happened. My Mom goes to the infusions with me. The nurse said I looked like I didn't feel well and said my face got really red. She got an order for Phenergan and I felt better. Mom said something about it must not have been that bad because I didn't actually throw up. REALLY?!?!?!
I don't want pity from my family. I just want them to understand that I don't feel well. I am not allowed to lay in bed or rest. There is always something to do around the house or someone needs something or I need to watch my niece. It's never ending. I feel really stiff today and wore out. I got into somewhat of an argument with my Mom because she wants me to clean the house today. This happens the day after an infusion, every time. I just don't get why no one understands that I don't feel well.
I went to the gyno this past Wednesday and they scheduled a hysterectomy for next Friday. I was not expecting that, but knew it was going to happen. My Mom says stuff like, "well, I always had periods too, so my endometriosis is bad too." She still has her uterus. My Mom is upset because I have never been married and I don't have any children. She is acting like this is my fault that I need a hysterectomy.
I guess I just don't like when someone minimalizes (is that a word, it is now) my feelings, pain, and what I am going through.
I'm rambling, I'm sorry. I'm just going to quit here. I thought about re reading this and editing, but I just don't have it in me right now. Thanks for letting me whine about my problems. I am aware that my situation is minute compared to others, I just needed to vent about my own situation.
Thanks for listening.
