Monday, February 23, 2009

Just a blah day

The past couple of days have just been blah days for me. Feel like I am in a rut. My husband has a pulled muscle in his chest and has been in some pain. So I have been trying to help take care of him for once. He is always taking care of me.

We stayed home from church yesterday. He wasn't feeling good neither was I . I had to increase my remodulin this past week. I was having trouble with Shortness of Breath and swelling. This is the first time I have had to do an increase since September 2008.

I get a little down every time I have to do an increase. To me it is showing me that I am not doing as well as I think I am. I see it as a defeat. I know many people will be like what are you thinking. That is just me and how I feel. My goal is to get better and increasing isn't getting better. So I guess I have been a little down about that too.

I try to stay positive with everything but some days that is just hard to do. I know that I can only take it one day at a time. God is going to take care of me and my family through this journey. I have to keep praying and giving it to God everyday.

This blog has helped me in so many ways. A lot of times I have a problem expressing my feelings. I know I can come here and get all my feelings out. Thanks to all of you who take the time to care and read my blog. I could be fooling myself and no one reads it but that is okay. I am doing this for me and to help someone else if I can.

Friday, February 20, 2009

Watching People

Since getting sick I watch people more. I envy things that people take for granted everyday. Before getting sick I took a lot of things for granted too. I guess until you have to deal with something that you dont think about the things that just come natural to us.

Like sleeping in my bed all night. Before getting sick I could sleep in my bed all night. Not have to get up cause I cant breath. Now some nights I am lucky to be in my bed for 2 hours. I can never go more that 4 hours without having to get up. Yes I use oxygen at night. I still have to get up and sleep in the recliner. Some night I watch my husband sleeping and wish I could do that just for one night. That is something that I never thought of before. Some nights I cant sleep in my bed at all. Just depends on what kind of day I am having. Just being able to lay down is so heavenly sometimes.

When I had to go on oxygen almost two years ago I was so upset. First it was showing me I was getting worse. That was hard to accept. I have been fighting so hard and going on oxygen felt like a failure to me. Having to go out in public scared me to death. I remember the first time I had to go out to Walmart. I got so many stares. I could not believe people can be like this. One little boy kept staring at me. He asked his mommy why I was wearing that thing in my nose. She told him it was because I was too fat and had trouble breathing. I cried and cried over that. I never stared at people that I would see with a disability or using oxygen. I would go out of my way to help them if I see they needed help. That is how I taught my kids too. Now I was one of those people. Even at church I had a man staring at me. I thought it was very rude of him. It really upset me for I thought I could go to church and not have to worry about people staring. When that happened I just cried and wanted to go home and not show my face in public again.

Having to use an electric cart and people would get annoyed with you cause you were in there way. What happened to compassion in people. I just dont understand it anymore. I would watch people going about there business. They could walk through the store and were able to breath. I say to myself they dont know how lucky they are. What so many of us would give just to be able to walk through the store and be able to breath.

We all take so much for granted everyday. I know there are still things that I take for granted. We all have to be more aware of what we are saying and doing to people. We never know what someone might be going through. Life is not easy for any of us. I have to keep praying everyday that God gives me the strength to go on.

Thursday, February 12, 2009

My Wonderful Husband

When I first got sick I was going through a bad divorce. I never thought that I would meet my soul mate. I was in early 2002 I was bored one night. I thought I will check out a yahoo chat room. I had not been in chat rooms before. So I didn't know what to expect. As soon as I got in the chat room I started getting these instant messages. Of course they just want to talk dirty. Then this man popped up and was being very nice. I am wondering when is he going to start talking dirty and I have to delete him too.

That never happened. We talked on the computer for a couple of months before we talked on the phone. I was very up front with him from the beginning about my illness and being a single mom. I thought for sure that would be the last time that I would hear from him. We took the time to get to know each other before we met. I would ask him the same questions over a few weeks apart. To see if he was for real or just another jerk.

He was for real. We met in the summer of 2002. He lived 4 hrs from me. I knew I loved him when we met. My mom was not to happy that I was meeting someone off the Internet. His family was not happy either. We knew we were meant for each other. That summer is when we decided to get married. First we had to decide where we wanted to live. He lived 4 hrs away. I have never lived away like that.

I had told him that I would move so he wouldn't have to change jobs. He called me one weekend and told me that he gave his 2 weeks notice. That he knew that he needed to move where I lived. His family thought he was nuts. From the beginning I got the feeling that his mother didn't really like me. Yes that bothered me but I wasn't marrying her. He told his family about my illness. I don't think they really understand how serious it is.

We were planning on getting married in the Spring of 2003. We were planning the wedding and I was going to school. It was all stressful on me. I came home from school one afternoon and told him I thought we should just go to Gatlinburg, TN and get married. We called our parents and told them we were going. They were more than welcome to come if they wanted to. That was on Wednesday and we left the next morning.

It didn't matter to him that I had an illness. I made sure he understood everything about my PH before I agreed to marry him. At first I had a hard time understanding why anyone would want to be with me being sick. When you find that someone it isn't going to matter if they really love you. We have been married for over 6 years now. I have a wonderful husband. Wish I could have met him 20 years ago. He helps me so much. He will cook, clean, do laundry, help with the kids. He does everything I need him to do. He does it all without complaining. I could not have asked for a better husband. Both my parents love him. Everyone who knows us tells me all the time I am lucky to have a wonderful husband.

Yes I am lucky but God deserves all the credit. God put us together. What are the odds that both of us would be in the same chat room at the same time. I thank God for him everyday. If there is anyone who thinks just because you are sick you are not going to find anyone don't give up. Even though I live with PH I still am able to have a life.

Friday, February 6, 2009

Meeting New People

When I was still trying to figure all this PH stuff out the last thing I thought of was making some awesome friends. So many people came into my life that would never have happened if not for getting PH.

First my original doctor is an awesome doctor. He was caring and was making me a priority. Then there was his nurse Kathy. I could go on and on all day about Kathy. She is such a dear friend. Even though she is no longer my nurse we stay in touch. If I am confused about anything or making a big decision concerning my PH I call her to get her advice. She still takes the time to talk to me even though she is not my nurse anymore. I love her dearly.

Now I have a wonderful doctor at Ohio State University. She is a very caring doctor. It takes a special person to be a good PH doctor. I was blessed to have two very wonderful doctors. I don't always make things easy for her. I can be very stubborn at times. I know that she is right and need to do things her way. She is very compassionate and gives me a little lead way. I also have a great nurse at OSU too.

It is so very important to have doctors and nurses that you are comfortable. I did have one doctor who I just didn't connect with. I was going to the Cleveland Clinic and it was just to far for me. I loved my doctor and nurse up there. I didn't want to leave them. If I could have gotten them to move closer to me I would have tried so hard to do that. I knew that was impossible.

I attended the PH Conference in California and met a doctor who actually came to my town once a week. I thought this was great. I switched to him. Our personalities just didn't fit together. I knew that I would have to find another doctor. That is when I found my doctor at OSU.

If you are not comfortable with your doctor you have to find someone you are comfortable with. Along the way I have found many friends. I roomed with a lady when I went to the PH Conference in California in 2002. I was nervous about rooming with a lady that I didn't know. It was such a blessing. She was a very sweet lady and we became good friends. We kept in contact with each other for the next few years. Sadly she passed away in 2007. I miss her so much. It was hard hearing of her passing. It really showed me how real this illness really is.

I also became good friends with an amazing woman named Elisha. She is so wonderful. She is there to help me with anything that I need. She is another special person who has come into my life that would not have if it wasn't for the PH. That is what I try to focus on more.

It is all a blessing from God. Some of you may be thinking how can she see this as a blessing from God. If it wasn't for the PH I would never have met this people and so many others that I have not talked about. I see these important people in my life as a blessing. Sure I have my times that I don't understand and I get mad and upset. The blessings outweigh the sad times and that is what I try to focus on. Don't get me wrong I have my bad days and spend a lot of time crying. I have to keep trusting God and letting him have control of my life.

Tuesday, February 3, 2009

How I made my peace with God

Sometimes we all get so low we have nowhere to go but up. That is where I was at. Being raised in church I knew how to pray. I started crying out to God. First for forgiveness of my sins. Yes I was sinning when I turned away from God. Then I started asking God to show me areas I needed to change. I knew I could not change on my own. That I needed him to help guide me. I started reading my bible. My favorite verse is Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. I kept praying and reaching out to God. He guided me through the things I needed to work through.

He was also giving me so many blessings. I was able to see my PH as a blessing in some ways. I had to quit my job and stay home. I was able to be home with my son and be there for my daugher when she got out of school. It took 5 months for me to get my disability after I stopped working. Durning that time I lived on my child support. All my bills were being paid and we did not go hungry. Without God I would not have been able to make it through that time.

Yes we had our challenges too. God does not promise us that we are going to have everything so smooth. We are going to be tempted and go through many trials. We have to make that decision to keep trusting in him. That is what I did and God took care of my family and continues to take care of us everyday.