The healthy one

It's not easy being the healthy one. Sometimes I feel so much guilt for having a bad day when I know that Rick has bad days all the time. If I am having a back ache or headache, I always feel badly when I complain about it in front of Rick. His joints and back hurt him most of the time and unless you know about it, like I do, most people would never know. He can get terrible headaches that land him in bed or in the shower to try to get relief, and then I complain when I have a headache. How is that fair? He goes about his business and very rarely complains. If he complains I know he is really hurting.

When the kids have been crazy all day and I have about had it, I feel bad when I have to ask him to help. I don't want to have to interrupt his nap, or bother him to help me. I know that probably sounds silly, but I feel like I should be able to handle every situation because I am the healthy one. He works ridiculously hard every day, and I just have to take care of things around the house. So there is some degree of guilt on my part when I have to ask for his help. He never asks for help because he is sick, so I feel like I should be able to handle things because I am the healthy one.

I am sure that all sounds so pathetic, but those are the things that bother me.

I am not always very good at coping with Rick's diseases. It has taken me awhile to come to terms with everything, and I am still struggling with it all. At first I felt overwhelmed with what Rick would have to deal with. With the Crohn's diagnosis it was actually a relief at first because he was so sick I thought he probably had cancer. He was very sick and had lost an enormous amount of weight. I had been doing research before the diagnosis and from what I had read on the internet I figured it was cancer, but I had also seen what Crohn's disease was as well. So when the doctor said that he was really sick and that it was Crohn's disease I was actually relieved. I knew that Crohn's was treatable and liveable, granted it can also be painful and hard to control at times. But I knew that it was not something that was going to take him from me. After getting that under control life seemed to get back to normal.

About a year and a half later Rick started having severe pain in his joints and he was finding it more and more difficult to walk and get around. When he couldn't get out of the shower on his own it was time to go to the emergency room. That is where we discovered that he had an auto immune arthritis called Spondyloarthopathy. I was so worried about him, I definitely did not like seeing him in so much pain. That was hard to watch and I will probably not forget the pain on his face. How can I possibly complain about my back hurting when he has gone through something like that? Like I said, it is not easy being the healthy one.

Now the diagnosis of PSC was not something I was prepared for. Sure I knew what it was. I had done all the research on crohns and knew there was a liver disease that only like 1% of crohn's patients got. Of course I didn't look too far into it because I thought that there would be no way Rick would get that. I was crushed when the doctor thought that the high liver panel indicated that Rick had PSC. I went home and looked it up on the internet. I couldn't believe my eyes when I saw that most patients will require a liver transplant and that it was considered terminal. OMG!! How could my husband have something terminal?!?!?!

Waiting for him in the hospital waiting room while he was undergoing the procedure to determine if he did in fact have PSC was probably the hardest time of my life. I very vividly remember sitting on that chair and looking at the clock over and over again. I remember thinking that the procedure should have already ended and then still waiting another hour after that. I remember the doctor coming into the waiting room and pulling me into the recovery area to tell me that it was PSC. I remember standing by Rick who was laying in the bed sleeping away, and putting my hand on his foot while the doctor talked about the PSC. I knew too much about the disease and inside it felt like my heart was breaking. I wanted so badly to be able to cry but I wasn't going to do that in front of the doctor, or at the hospital for that matter.

I have cried many times since then. I have cried for the third child I had wanted to have. I have cried for the future that is now so uncertain. I have cried just because I don't understand why my husband. I have tried to be strong and not show how much it bothers me sometimes. And other times I just feel like my stomach is in knots. I am one of those people that like to plan ahead and know what is going to happen. I don't like not knowing what the future holds for Rick. I have a hard time coping with being the wife of a PSCer (as they are called in the PSC support group). When we were first married I never imagined that this is where we would be right now. Like I said before, I think it is hard to be the healthy one. I am the one that has to watch all this happen to my husband. I am the one that has to stick a needle in his arm. I am the one that has to wait in the waiting room dreading what the doctor is going to say.

And of course I feel guilty for feeling this way because he is the one that has to go through all of this. Rick is the one in pain. Rick is the one that has to take so many pills everyday. Rick is the one that has to endure the tests. I am just the one that has to watch.