I have wondered this often. Is it ok to be angry with God? When I first found out about my PH I was scared. I could not understand why God was allowing this to happen to me. It seemed that my life was one big problem. I was not happy and had not been happy in many years. Maybe I had never really been happy ever in my life. I was going through a divorce and trying to raise two kids on my own. I was working long hours and doing the best I could for my kids. Then I got sick. Why was God allowing this to happen to me?
At the time I was attending church and living as close to God as I was able to at the time. Why does it seem that everyone else is so happy and things go there way. Why could good things never happen to me. When was God going to give me my break. I felt so alone. I had people who I thought were my friends. I soon found out who my true friends were. I found that I really didn't have anyone that I could count on. Both my mom and dad were helping as much as they could.
I stopped going to church. I felt I didn't have a church where people really cared about me. I had been in that church for a long time and no one even called to see how I was doing when they found out I was sick. I was very hurt by that. It showed me once again that no one cared about me. If it wasn't for my two kids I honestly don't know what would have happened. I just did things that I knew were wrong. I just wanted the pain to go away. I could not understand why God was allowing me to have to deal with so much. One time my sister in law told me that God knew I could handle a lot cause I always had to deal with so much.
Why me, why did I have to be the one who always had bad things happen to me. I know of the things I brought on myself with decisions that I made. I never felt I fitted in anywhere. That maybe me being born was a mistake and I was having to pay for the fact that I was born. That God was going to throw as much at me as he could. That he didn't care about me he was trying to destroy me. I never understood why God didn't just let me die instead of going through all of this. Had I done something so terrible when I was a child and now as an adult I was having to pay for it.
I was depressed and no one cared. No one ever said to me that I seemed depressed. Looking back now I see that I was so much depressed. I never thought of suicide. I knew if I ever tried anything like that I would go to hell. I didn't want to go to hell but I was angry with God. I would watch people around me and they all seemed to happy. I didn't know what I had to do to be happy. I didn't know what happy felt like. Feeling that way and now having to deal with PH. What are the odds that I would get something so rare. Why me God, why me?
I felt so out of place even with my own family. I had family members who didn't even think twice about checking on me after I got sick. I got to the point that I either had to rise above all of it or I was going to die and where would that leave me kids. My kids are a huge reason that I fight everyday. If something happened to me who would take care of my kids. No one could take care of my kids the way I could. No one would love them the way I do.
I made peace with God and now I trust him in ever area of my life. He has helped me deal with so many things. There are still days that are hard. God has given me so many blessings. I have learned how to deal with my PH. None of this would have been possible without God. Next time I will talk a little bit about the blessings that have come to me as a result of my PH.
Saturday, January 31, 2009
Wednesday, January 21, 2009
Starting A New Life
Trying to get back in the swing of things after coming home from the Cleveland Clinic was hard. There are a lot of things that we take for granted everyday that now I was aware of. Just taking a shower or walking to my car I was out of breath. I would have to sit and catch my breath.
When I came home I tried as best I could to explain it to my kids. My son was only two at the time. So I knew he would not understand much. I explained that mommy had a boo boo on her stomach and he had to be careful which side he could sit on. After there everytime he wanted to sit on my lap he would ask which side mom. I remember the first Sunday we were back at church. As we walked in my son Spencer jumped in front of me. Telling people to back up that I had a boo boo on my stomach and not to bump me. My daughter Dawn was very quiet. She never really said much about it. I was worried about her and how she was really handling all of this. Dawn tends to keep things to herself.
I was concerned as to how Spencer's dad was going to react when he found out. I was so afraid that he was going to try and take Spencer away from me. Dawn was older and I knew I would not have that problem with her dad. When Spencer's dad found out he just told me he was sorry I was going through this. That if at any time I needed him to keep Spencer he would. I didnt even dare ask him for help. I had family and friends that helped me with my kids when I needed them to.
Going back to work was a challenge for me. Working full time and trying to take care of my kids was not easy. Dealing with my illness was stressful enough. The medication I was on caused a great deal of pain. Just getting up out of a chair was painful. I would come home from work and be ready go to bed by 7PM everynight. Spencer would lay in bed with me and watch tv with me. That was about all I could do after working all day. I only worked for about 8 months after starting on my new medication. It was just way to much for me to handle.
I was approved for my disability within a couple of months. We had to wait until I had been off work for 5 months before I could start getting my benefits. That was a very difficult time. We lived only on the little bit of child support I received. Looking back I dont know how we made it through those few months. We made it through them together. Then I started getting angry with God. I will talk about that in my next post.
When I came home I tried as best I could to explain it to my kids. My son was only two at the time. So I knew he would not understand much. I explained that mommy had a boo boo on her stomach and he had to be careful which side he could sit on. After there everytime he wanted to sit on my lap he would ask which side mom. I remember the first Sunday we were back at church. As we walked in my son Spencer jumped in front of me. Telling people to back up that I had a boo boo on my stomach and not to bump me. My daughter Dawn was very quiet. She never really said much about it. I was worried about her and how she was really handling all of this. Dawn tends to keep things to herself.
I was concerned as to how Spencer's dad was going to react when he found out. I was so afraid that he was going to try and take Spencer away from me. Dawn was older and I knew I would not have that problem with her dad. When Spencer's dad found out he just told me he was sorry I was going through this. That if at any time I needed him to keep Spencer he would. I didnt even dare ask him for help. I had family and friends that helped me with my kids when I needed them to.
Going back to work was a challenge for me. Working full time and trying to take care of my kids was not easy. Dealing with my illness was stressful enough. The medication I was on caused a great deal of pain. Just getting up out of a chair was painful. I would come home from work and be ready go to bed by 7PM everynight. Spencer would lay in bed with me and watch tv with me. That was about all I could do after working all day. I only worked for about 8 months after starting on my new medication. It was just way to much for me to handle.
I was approved for my disability within a couple of months. We had to wait until I had been off work for 5 months before I could start getting my benefits. That was a very difficult time. We lived only on the little bit of child support I received. Looking back I dont know how we made it through those few months. We made it through them together. Then I started getting angry with God. I will talk about that in my next post.
Tuesday, January 20, 2009
My First Experience At Cleveland Clinic
Going to the Cleveland Clinic was causing a lot of stress. Not knowing what to expect. I am still thinking they are going to put me on a pill and I would be okay. We get to Cleveland and meet my first PH nurse Kathy. We went through a series of test. She talked to me about a new medication called UT 15 that was in a clinical trial. She explained a little bit about it. That I would have to give myself injections.
I have going through my mind the type of injections my great grandmother had to take for her diabetes. I am thinking I can learn to do that. While we were waiting to see the doctor Kathy came in and said she had a patient that she wanted me to talk to about the medication. By this time my dad and step mom was there with me along with my mother. This lady came in and showed us her site. She showed me a site where a small catheter was in her stomach hooked to a small pump. I looked at her and told her that was not what they were going to do to me. She told me that is how you have to get the medication. Now I was getting really scared.
My doctor finally came in. He explained that was how I had to get my medication if I agreed to go on this medication. At the time the only other medication was inserted through a central line in the chest. After talking it over with my parents we knew we had to do this. We were scheduled for a heart cath and then we would be started on the medication. I was admitted to the hospital and had the heart cath and started the medication.
We could not leave the hospital until we learned how to do the site changes and work the pump. My mom stayed with me and we practiced and practiced so we could go home. They told me that I would be there a couple of days. I wanted to get out of there and back home to my kids. The next morning when Kathy came in I showed her I knew how to do everything. I finally got to go home.
Since I was in a clinical trial I would have to come back every few weeks until we knew if I was on the medicine or not. Being in a clinical trial we did not know for the first twelve weeks if I was on the medicine or not. I knew after the first week that I was on the medicine. I was feeling better and was breathing better. If I wasn't on the medicine then all of this had to be in my head. We went back at the end of the twelve weeks and I was indeed on the medicine. This medicine was saving my life.
I have going through my mind the type of injections my great grandmother had to take for her diabetes. I am thinking I can learn to do that. While we were waiting to see the doctor Kathy came in and said she had a patient that she wanted me to talk to about the medication. By this time my dad and step mom was there with me along with my mother. This lady came in and showed us her site. She showed me a site where a small catheter was in her stomach hooked to a small pump. I looked at her and told her that was not what they were going to do to me. She told me that is how you have to get the medication. Now I was getting really scared.
My doctor finally came in. He explained that was how I had to get my medication if I agreed to go on this medication. At the time the only other medication was inserted through a central line in the chest. After talking it over with my parents we knew we had to do this. We were scheduled for a heart cath and then we would be started on the medication. I was admitted to the hospital and had the heart cath and started the medication.
We could not leave the hospital until we learned how to do the site changes and work the pump. My mom stayed with me and we practiced and practiced so we could go home. They told me that I would be there a couple of days. I wanted to get out of there and back home to my kids. The next morning when Kathy came in I showed her I knew how to do everything. I finally got to go home.
Since I was in a clinical trial I would have to come back every few weeks until we knew if I was on the medicine or not. Being in a clinical trial we did not know for the first twelve weeks if I was on the medicine or not. I knew after the first week that I was on the medicine. I was feeling better and was breathing better. If I wasn't on the medicine then all of this had to be in my head. We went back at the end of the twelve weeks and I was indeed on the medicine. This medicine was saving my life.
Monday, January 19, 2009
Being diagonsed with Pulmonary Hypertension
It all began in the summer of 1999. I was going through a very rough divorce and working about 60 hours a week. I had a 12 yr old daughter and a 2 yr old son I was raising alone. It seemed I never seen them as I was working to make ends meet. Then it happened I got sick. It was the Friday before Labor Day. I was at work and just feeling very bad. Had a very bad headache and was so tired. I just thought it was from working so many hours.
I was glad for the long weekend so that I could rest and I would feel better in a couple of days. That didn't happen. As the weekend went on I didn't feel any better. Went back to work on Tuesday and as the day went on I kept feeling worse. I started noticing that I was having trouble breathing when I would walk any distance. The room that my desk was in was a very large and long room. Of course my desk was way back in the corner from the door. I started getting really out of breath when I walked about from my desk. I had been there about 10 hours. I walked to my supervisors desk which was about 10 feet away and could not breath. I had to sit down to catch my breath. I told her I was going home.
I knew that something had to be wrong. By the time I got to my car I could not breath and was afraid that I could not drive. I knew I could not go back in the building. The front doors were locked and I knew I could not walk around to the docks to get back in. I sat there for a while and prayed. Once I was feeling a little better I drove myself to urgent care. They ran some test on me. They told me that they had called an ambulance cause they thought that I had had a heart attack from my EKG. I was really upset. I called my mother and told her what was going on. She met me at the hospital. They admitted me to the hospital.
The next morning my doctor had ordered lots of test. One of the test was an echo of my heart. She came in later and told me that I had Pulmonary Hypertension. I had never heard of it before. I was thinking hypertension means high blood pressure so they were going to give me a pill and I was going to be alright. Boy was i wrong. The next step was to send me to a pulmonologist. I went and he agreed that it was Pulmonary Hypertension. I told him that I wanted a second opinion. So we went for a second opinion. The second doctor agreed that it was Pulmonary Hypertension.
Our next step was to go to a cardiologist for a heart cath. This was the only true way to get the true reading of Pulmonary pressures. We went and had the heart cath done. The doctor said that he had never seen pulmonary pressure that high before. A normal pulmonary pressure is 25 or below. Mine was 125. He told me that they would put me on medicine and I would be fine. I am still thinking that they are going to give me a pill and I am going to be fine. My doctor told me that I would have to go on a treatment. My mom asked him what would happen if I didn't go on any treatment. He told her that she would come in and find me dead.
A few days later my doctor called me at work and told me that I had to go to the Cleveland Clinic the next day. This is when I knew that it was really serious. They don't just send you to the Cleveland Clinic unless it is really serious. I was going through a lot of emotions at this time. Mostly I was worried about my kids. What would happen to them if I could not take care of them or if I died. Next time I will tell you about my journey to Cleveland Clinic.
I was glad for the long weekend so that I could rest and I would feel better in a couple of days. That didn't happen. As the weekend went on I didn't feel any better. Went back to work on Tuesday and as the day went on I kept feeling worse. I started noticing that I was having trouble breathing when I would walk any distance. The room that my desk was in was a very large and long room. Of course my desk was way back in the corner from the door. I started getting really out of breath when I walked about from my desk. I had been there about 10 hours. I walked to my supervisors desk which was about 10 feet away and could not breath. I had to sit down to catch my breath. I told her I was going home.
I knew that something had to be wrong. By the time I got to my car I could not breath and was afraid that I could not drive. I knew I could not go back in the building. The front doors were locked and I knew I could not walk around to the docks to get back in. I sat there for a while and prayed. Once I was feeling a little better I drove myself to urgent care. They ran some test on me. They told me that they had called an ambulance cause they thought that I had had a heart attack from my EKG. I was really upset. I called my mother and told her what was going on. She met me at the hospital. They admitted me to the hospital.
The next morning my doctor had ordered lots of test. One of the test was an echo of my heart. She came in later and told me that I had Pulmonary Hypertension. I had never heard of it before. I was thinking hypertension means high blood pressure so they were going to give me a pill and I was going to be alright. Boy was i wrong. The next step was to send me to a pulmonologist. I went and he agreed that it was Pulmonary Hypertension. I told him that I wanted a second opinion. So we went for a second opinion. The second doctor agreed that it was Pulmonary Hypertension.
Our next step was to go to a cardiologist for a heart cath. This was the only true way to get the true reading of Pulmonary pressures. We went and had the heart cath done. The doctor said that he had never seen pulmonary pressure that high before. A normal pulmonary pressure is 25 or below. Mine was 125. He told me that they would put me on medicine and I would be fine. I am still thinking that they are going to give me a pill and I am going to be fine. My doctor told me that I would have to go on a treatment. My mom asked him what would happen if I didn't go on any treatment. He told her that she would come in and find me dead.
A few days later my doctor called me at work and told me that I had to go to the Cleveland Clinic the next day. This is when I knew that it was really serious. They don't just send you to the Cleveland Clinic unless it is really serious. I was going through a lot of emotions at this time. Mostly I was worried about my kids. What would happen to them if I could not take care of them or if I died. Next time I will tell you about my journey to Cleveland Clinic.
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