Sunday, October 23, 2011

Confusing, Frustrating, disappointing!

Today is my wonderful and amazing boyfriend's birthday. I planned a nice lunch with his friends and got him a huge cake and some sparkling wine. It was a wonderful day, even though the day before I had an attack after having the worst service at Whole Foods. I ordered a cake a week in advance so it would be ready the day before and all I would have to do is be in and out. Lately, getting in and out is about all I can handle. I arrive and they charge me for a small instead of a large cake which I didn't realize.

After I paid they the tell me to go back in line and pay more, so I wait again. While in line I am looking at the paper which has the wording for the cake and they had spelt his name wrong to. It was a simple name and I told them five times on the phone the correct spelling.

So now they have to fix the cake. Maybe for someone else this delay would mean nothing but to a sick person like me it was exhausting. No one even appologized until I found myself at customer service complaining; they did nothing to compensate me for their mistakes. It seemed like forever and a Friday at  Whole Foods at 4 pm is literaly a nightmare! I kindly told the man what happened. He said sorry I will look into it and sent me on my way. I stood there looking at him, getting more upset due to the stress of even just planning any sort of event I began to bleed profusely - through my pants and so embarassed I am forced to run to the car.

Today is my boyfriend's actual birthday. After all these events I am now too tired to even accompany him out on the town with his friends. I feel terrible. I feel like I am letting him down. I worry what will his friends think? They are still just getting to know me.

I know he completely understands because he is a great and wonderful man who has seen what endo can do to me but most people have not. I just want to be out there with him but I cannot. This is sad.

I am 26 years old and cannot go out on the town with my boyfriend for his birthday because my body will not allow me. I so desperately want to be there with him, instead I am lying in our bed cramping, bleeding and crying from the pain. And then the disapointment that I am not normal and endo wins again.

What a life sentence. I never get a day off and I can'teven particapate in normal activities. I feel like I am a prisoner in my own body. I just so want to be there with him!

Erin Ross Coward

Wednesday, October 12, 2011

Confusing, frustrating and disappointing!

Wow, it has been a very long time since I wrote. 

Life has been so confusing, frustrating and disappointing. 

After months of being on bed rest too sick to function, I was given the chance to have my fifth surgery in August. I had to go through several doctors to finally return to Dr. Catherine Allaire. 

She is the best in town by the way after visiting many great doctors. After many scheduling difficulties I was given a day, which then was canceled and rebooked. To the woman who gave up her spot for me, thank you. 

I had been told in the summer I had been accepted to UBC for a two year program in the Education department in Elementary studies. I was so excited. 

I had worked so hard to get my first BA in art history and had dreamed of returning to school to become a teacher. The woman who gave me her spot saved me from having to have my surgery in the fall which would have meant I could not proceed with school and my dreams. 

Well, the day came and after five hours waiting hooked up to an IV I was told there was not enough time to do my surgery. I was heartbroken. My new boyfriend and I cried as he helped me get dressed. It felt like my life was begining to cave in on me. 

My dreams were disappearing and the thought of spending another month or two in bed horrified me. The next day I decided to just go to the ER and make them do it. I was lucky Allaire was there and I got my surgery. 

I had to stay in the hospital for a few days to recover which is usually rare. After my release I found out that I had a bladder infection and the hospital had forgot to tell me or treat me. I ended up back in the hospital. Finally I was on the road to recovery! Then another road block. 

In my first week of school I lifted a book bag which was too heavy and I ripped my ab wall near my incision. I ended up missing school and had to go back on meds. Meds in which I had worked extremely hard to get off of after the surgery. I felt helpless. I thought I was going to be kicked out of the program.

I have not yet but it is always in the back of my mind. Then my bleeding started up again. The surgery did not work. I was so upset. Most of my endo was removed except for a piece that was on my bowel. 

It was too dangerous to remove it. So now I have worry on my hands. What is wrong with me? This is not my Endo flaring up, I have been told my gushes of blood is something different. I just had my cervix cauterized, which is extremely painful. 

Again I am missing school. I am so afraid I am going to loose my spot in the program and my dream will be gone since I have a disease that I cannot control. Everyday I worry will I bleed. I have spent months thinking positive but now I am filled with worry. I work so hard at school and I never give up. 

I hope they do not give up on me. I keep trying to believe everything will work out but as some of you know, when you aren't in control of your own body anything can happen. 

-Erin Ross Coward