Tuesday, August 4, 2009

Been A While Since I Have Posted

It has been a while since I have even thought about blogging. It just has been so very busy around here. I know that is not an excuse but that is my excuse. lol.

My daughter had her baby about two and a half weeks ago. He was early and was in Childrens Hospital for five days. He is doing great now!! He is adorable!! My family is what keeps me going.

I have been feeling pretty good lately. I am having trouble with swelling. Trying to get all this fluid off of me. It is hard for me to take extra water pills if I am not going to be at home. It would help if I would not fall asleep in the recliner with my legs hanging down. I know that is part of the problem.

I know that God is watching over me and my family. Usually summers are very bad for me. So far this summer has been pretty good for me. One reason could be that it hasnt gotten real hot and humid here this year. I am just glad that I have not had a bad summer.

There seems to be so much saddness around lately. So many people have lost their jobs in this area. DHL was here and about 10,000 people are without jobs. Everyone seems so sad so that makes me sad. I dont know if it is the economy or just me that is getting me down. We were worried for a while that my husband was going to lose his job. Thank God he didnt. I dont know what these families are doing that are losing their jobs. Its depressing everywhere not just here.

I found a knot on the front of my neck a few weeks ago. Went to the doctor and she said its a goiter. That I had to go on medicne for my thyroid. I was so worried it was cancer. She did an ultersound on it. One more thing that God has taken care of for me. So I am on another pill. As long as it is helping me I am not going to worry about it. I just have to trust God.

I know I am all over the place with this post. I just have so much running through my mind I am just typing as it comes to me. I guess that is enough for now. How is everyone else doing?

Thursday, June 4, 2009

Test Results Are In

I got my test results from my echo of my heart and the ultrasound on my throat. God is so good. We are happy with the results of both test. Finally I feel that I am heading in the right direction.

First the echo, we do one of these every year. The past three yrs we have not seen any improvements at all. I had been getting a little discouraged over this. Well this one is showing improvement in the heart. That is really good news. I was really happy with that. We started a new medicine called Letairis back in December and I think it is helping. Also I have been trying so hard to lose weight. It is coming off very slow but its coming off. I think that is helping too. I know that losing weight has to help. It will be easier on my heart without the excess weight.

Losing weight is not an easy thing to do. I hear people say just dont eat and you will lose weight. It isnt all about eating it is other things too. I am working on all of that and it is taking time. I know that I will get the weight off but it will be slow. I want it to be slow so that I dont gain it all back.

The other test I had was on my thyroid. I have a knot on the front of my neck. They call it a goiter. They have put me on thyroid medicine and will check it again in a couple of months. I was very happy with this. I was concerned about it and spent time in prayer. I kept giving it to God every time that I started to worry about it. God took care of it for me.

I serve an awesome God. God has always been there for me no matter what I am dealing with. Has it been easy, of course not. God never promised us that everything would be easy for us. I know that during the times that I am going through tough times God is right there with me. That is how I grow as a Christian. I think so many people think that once you become a Christian that you dont have problems anymore. Maybe that you dont but that you shouldnt. That is very far from the truth. I know with my illness I see it as a blessing in some ways. I have come across so many people. I have made some wonderful friends. I am doing this blog and you are here reading it. I count it a blessing to be able to share me story with all of you.

I am here to help others and uplift and vent when I need too.

Always remember that God loves all of us the same and want all of us to be happy!

Friday, May 29, 2009

Had a vist to my PH doctor

Wednesday I had an appointment with my PH doctor. It went well. I have lost 8 pounds since my last visit. So she was very happy with that. I just need to keep losing.

I had an echo done. I think its been about a year or so since my last one. I still have not heard what the results were for that yet. I am hoping that I am doing better. As long as it isnt getting worse I will be fine with that. I had to do my 6mw and didnt do so good. It was late afternoon and I had not eaten all day. I was getting really hot during the walk and light headed. I know it was cause I had not had anything to eat. I am sure she isnt going to be happy with that walk. I wasnt happy with it.

We talked about a knot that I found last Friday on the front of my throat. It is my thyroid. I got my bloodwork done on Tuesday and my Primary doctor checked it and said it was my thyroid. She did a blood test and scheduled me for a ultrasound of my thyroid on Thursday. My PH doc said that she doesnt think that it is much to worry about. That my thyroid has been working overtime and is inflamed. She said that only about 5% of thyroid problems are serious. That is may just have to go on medicine for it. I have not heard anything yet and today is Saturday. So I am hoping that no news is good news.

I just dont need something else to have to worry about right now. I just keep praying that everything is going to be okay.

Friday, May 15, 2009

Cincinnati PH Phourm

Last night I had the opportunity to speak at the PH Phourm in Cincinnati. I was very impressed with the turnout. It was great and the doctor and nurse who spoke did a great job.

I was a bit nervous since this was my first time telling my story. It was a lot easier than I thought. I knew I was in a room full of people who understood what I was going through. I hope that I was able to help someone in some way. Having being dx almost 10 yrs ago gives people hope.

It wasnt until later in the evening that I had some drama. While I was at the meeting I was very hot and was a little short of breath. I thought that it was just cause I was a bit nervous about speaking. On the way home I was still really hot. We dropped my son and husband off at home then we headed to Walmart to do grocery shopping.

My daughter and I got to Walmart and thank goodness they had the electric carts available. I was riding through the store and noticed that I was starting to get a little dizzy. I thought what is going on. As I was walking out of the store I thought that I should check my pump to make sure it was working. I looked at it and it was not even on!!! I had done a medicine change before we left for the meeting. I was in a hurry cause I always double check my pump to make sure I have it on. I did that at 4pm and it was 11pm. I had been without my Remodulin for 7 hours.

I called the nurse at Accredo and talked to her. I came home and got ready for bed and put on my oxygen. I knew being without the drug for that time that I was going to have some side effects. Yes I was having a very bad headache. Then today the diarrhea started. I was not surprised. I did email my doctor and told her what had happened.

About a year and a half ago I had a crack in my line. I could not even sit up without almost passing out. Then I was getting some of the drug but not all. This time I was not getting anything at all and was doing pretty well. My SOB wasnt bad. My doc said that that is showing her that my heart is getting better. That is really good news for us. I do have an echo scheduled for the end of this month.

I have been losing weight again. I know that losing the weight is helping me a lot. I just thank God that he was watching over me during this time. I am still amazed that I was able to speak last night and not get so SOB or even pass out!! Praise God!!

Monday, April 27, 2009

Went Away For The Weekend

My husband and I went to his parents for the weekend. They live about four hours away. I had told my husband at the beginning of the week if we were going to go before it got to hot we had to go this weekend.

We left on Friday morning and came home on Saturday night. It was a short trip but we had fun. My husband got to reconnect with his high school buddie. It was nice seeing my husband have a good time. We spent some time at one of his sisters. His brother was there also. My stepson was there with us too. We got to spend some quiet time with my stepson on Friday night. We all enjoyed that. My husband misses his family. It was a surprise to his dad.

On the way up there we had some problems with my central line leaking. We had to stop and I had to change it. I am glad that we got it fixed in time. I was wondering why I was short of breath with I got up on Friday morning. I started getting lightheaded again on Saturday morning. I was afraid that I was going to swell up a lot since I had not taken my lasix for two days. I wasnt to bad when I got home.

We both were so very tired when we got home on Saturday night. I am glad that we made the trip. My husband had a good time and that is what was important to me. This weekend was for him. I love him very much and want to do as much as I can for him. He is always there helping me. This was a small thing that I was able to do for him. I love him very much.

Friday, April 17, 2009

Seen My PH Doc This Week

Wednesday I seen my ph doc. I had stopped taking my Letairis last week. I wanted to see if it was what was making me swell up and feel so tired all the time. It was so I told my doc what I had done. She is putting me back on it at the lower dose. She wasnt surprised that I had stopped taking it. She said nothing surprises her that I do.

I have had a cough for a few days so she did a chest xray and I had my labs and six minute walk done. I have gained some weight back since my last visit in December. I knew I would have a gain. I have got to get the weight off. Why is it so very easy to gain but so hard to lose weight? That is a whole nother issue.

Today my PH nurse called and said that my doc wanted me to do an increase on my Remodulin. Oh what fun that is. I hate the side effects. I had to do an increase a little over a week ago and still having the side effects from that increase. I hate to increase my medicine. To me it is a sign of failure. That my PH is getting worse. I dont like to think about that.

I have a new grandchild on the way and need to get healthy. It seems the harder I try the more sick I get. Some days I feel like that I cannot keep fighting but I have a family that needs me. I just keep praying and trusting God.

Monday, April 6, 2009

Things I Am Thankful For

There has been so much going on that is depressing lately. I thought it was time that I reflect on things that I am thankful for. So here goes.

1. God My Father - Without God I would be nothing. He carries me through each day. I have a peace within me that only God can put there. I know that when I die I will be going to heaven. I thank God everyday for sending his son Jesus to the cross to die for our sins.

2. My husband Russ - I sure don't know what I would do without him. We have been married for about 6.5 yrs now. I was sick before we even met. We met on the Internet. Yes ladies there are really good men that you can meet on the Internet. God put us together is the only way to explain it. He is my rock and will do anything in the world for me and my family. God has truly blessed me with him. I love my husband very much.

3. My daughter Dawn - She is 21 yrs old. Yes she gave me a large amount of gray hairs during her teenage years. She has turned out to be a beautiful woman. A good mother to her son. We are not just mother and daughter we are friends too. I love my daughter very much.

4. My son Spencer - He is my baby boy. I love him very much. He is 12 yrs old and entering those teenage years. Yes we have challenges but he is a great kid who loves to sing in church. I love getting his hugs and kisses everyday.

5. My grandson Landon - What a joy he has brought to our lives. He is 3 yrs old and so full of life. Even on the days I am ready to pull my heart out he is a blessing. He is always ready to help me when he knows I am not feeling well. I love my grandson very much.

6. My mom - There is so much I could say about my mom. She has been there for me from the beginning of getting PH. She is one of my best friends. She is there when I need her for anything. Having her live right behind me has been such a blessing. Mom I love you!

7. My dad - My dad is a very strong man. He is a loving father. He has been there for me from the beginning too. He is there ready to do anything for me when I need his help. Even when he is sick he is more worried about me. He has told me if he could take this illness from me he would. That is true love. I love my dad very much.

8. Special friends Holly, Lisa, Jeanie, Elisha, and Kathy - They all have been so very dear to me. I met Elisha and Kathy as a result of my PH. They both are very special to me. They have been there to help me with whatever I need help with. Holly, Lisa, and Jeanie have always been there for me. Even getting on me when I need to slow down. They can tell when I am having a bad day. I appreciate all they have done for me and how they tell me to stop when I need to.

9. My church family - I know that I have many people praying for me all the time. When I am not feeling well that I can call on them to pray for me. I love my church family.

10. My wonderful doctor Dr. Sood - She is a very good PH doctor. She sometimes has to get tough with me. She doesn't just care about my PH she cares about me as a person and what is going on in my life. I love her and thank God for her.

I could go on and on all day. I needed to get all of this down so that it can be a reminder to me what I have to be thankful for. For those days that I am feeling low and I come back to this post and remind myself. God has truly blessed me.

Monday, March 30, 2009

Retaining Fluid

The past few days I have been retaining a lot of fluid. This morning when I got up I was 12 pounds heavier than I was on Thursday. This is not good. I knew it was time to call my doctor. I don't like calling my doctor cause I never want to be admitted to the hospital. I hate going to the hospital.

Well they increased my lasix by 80mg today. Told me if I don't get the fluid off of me that I will have to go into the hospital. The last time this happened and she wanted me in the hospital I fought her on it. She knows I hate going to the hospital. I have an appointment with her on April 15th. She is seeing if they can work me in on this Wednesday instead of waiting for two more weeks.

I can say that I am 4 pounds lighter this evening than I was this morning. So the extra lasix is working. Hopefully that in the morning it will be more and I don't have to worry about going to the hospital. She did also increase my Remodulin. With that will come the side effects. Mostly it will be bad headaches. That is already starting a little bit. I try not to complain about it to much. I have to look at it as this medicine is saving my life.

I have to get myself healthy. There is so much going on right now. Both my dad and step mom have been in the hospital in the past month. First my step mom was in there she got out and my dad went in. Then she got sick again after he came home and she is back in there again. So we have been really busy. I have not been getting the rest I need. Just say a prayer for me that I will get all this fluid off of me.

Thursday, March 26, 2009

My favorite bible passage

I have been reading some blogs tonight. It is very late and I cant sleep. It amazes me what some people have to endure on a daily basis. Yet they stay positive most of the time. That is what we have to do is stay positive about everything. With God all things are possible. We have to keep turning to him for all our needs. Here ismy favorite bible passage that I would like to share with you.

Jeremiah 29:11-14, 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. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart, I will be found by you," declares the Lord, and will bring you back from captivity.

Recently I have have been clinging to this passage. I know that if I have faith and believe then God is going to take care of me. Doesnt mean he is going to heal me. I have wondered many times why I was the one to get sick. I prayed and prayed why me God. God spoke to me and said why not you. Why should it be someone else other than you. You know it got me to thinking that we are all equal. Not one of us is better than the other. God loves us all the same. We need to show that love and support all the time to each other.

There are some days that it is hard to love others. Some days it is hard to love myself. We all have bad days. We never know what is going on in someone elses life at that moment. When we see someone being ugly we need to encourage them. Even if they are being ugly to us. Wow what a difference our world would be if we all did that. I am trying so hard to do that right now.

I keep praying and asking God to show me when I am not being loving to someone. I am the type of person that cant hold a grudge. I just want to see the good in everyone. Yes there are some people that are hard to be around. I still have to love them, isnt that what God does with us.

Wednesday, March 25, 2009

Been A Tough Month

Sometimes I wonder if there will ever be a week that something isnt going on. It seems as soon as I get through one thing something else comes up. Wouldnt it be nice to have just one week where everything goes as it should and you have no worries.

Well I know that isnt going to happen until I get to heaven. The past few months I have been through a lot of stuff. I often wonder why I have to go through it. Its not for me to know God has a plan. I trust God completely and will serve him no matter what is coming my way. I have had to learn how to keep giving things to God and not try to solve them on my own.

As far as my PH I cant complain. There are so many people out there that has it so much harder than me. Yes I am limited on what I can do. My family has adjusted over the years. Sometimes I get upset that I cant do the simple task as to walk through Walmart. That there are so many people out there that take that for granted. I think I talked about this in an earlier post. I think that is the one thing I miss the most. That I just cant go somewhere and be able to walk very far.

I am just trying to keep a positive attitude about everything. I am trying not to let things get to me. I dont need to add more stress to myself than I have already. Stress can do so much to a persons body. I just keep counting my blessings that God has blessed me with.

Monday, March 9, 2009

I think I am fighting a losing battle

I know that I am not alone in trying to lose weight. If you have never tried to lose weight I want to know who you are. I think that losing weight is harder than trying to keep myself healthy. I get so frustrated all the time.

There are so many diets out there. Each one promises that you can lose a lot of weight in such a short period of time. They are all liars. People will do anything to get your money. I have looked into a few of them. Thinking that would be great. Then I see how much it cost and that ends that. I didnt put the weight on in a couple of months. So why do I think I can take it off in a couple of months.

We live in a society that we want everything right now. We dont want to wait for anything. There are drive thrus for everything now. For fast food, drug stores, banks, even for weddings! We need to slow down. We dont walk for anything anymore. We have to drive everywhere we go. We live two blocks from a grocery store. My son and daughter both look at me weird if I tell them they can walk to the store.

I remember back when I was a teenager that we were always out riding our bikes all over town. We never just sit around the house and watched tv or played video games. We were out and about as much as possible. If we were around home we would have had more chores to do. We never said we were bored. That is all I here from my son who is now 12 yrs old. He needs to lose some weight too. It is like pulling teeth to get him to go outside and play. What is going to have to happen to get him moviated.

I am trying so hard to lose weight. My weight goes up and down due to retaining water. That makes it difficult for me to know how much weight I am losing. A few weeks ago I bought a dvd called Walking Off The Pounds. It is an in home walking video. You can do 1,2.or 3 miles. Since I have to be very limited on my exercise I only do the one mile. When I first started I could only do 5 minutes. Today I got in 15 minutes. That is a hugh thing for me.

I am trying to get my whole family to eat more healthy. My husband is addicted to chocolate. Sometimes that is hard. I have a sweet tooth and love my chocolate too. Portion control is the key. I tried like only eating twice a day and no luck in losing. I know that I have to eat to lose. To me that just doesnt make sense. The less I eat the more I should lose in my mind. I know that is not how it works.

So this week I am working on healthy eating and portion control. When I see results I feel really good. When I dont lose I feel really bad. I have been working on this for a long long time. Will I be successful in losing the weight? Guess it depends on what you consider successful. For me my first goal is to lose ten pounds before summer. I am making very small goals that I can acheive. Would I love to lose 50 pounds by summer, sure I would. I just know that I would fail setting a goal like that.

Am I all only in this battle or are others out that that have failed so many times before too? If so I would love to hear from you. Love to have some buddies in this diet journey.

Monday, March 2, 2009

Just Another Day

Right now things seem to be pretty good with me. Yes I am having some shortness of breath. It has been cold again this week. I am sure that is part of the problem. I just increased my medicine last week. I thought that would take care of it but it didn't as much as I wanted it to. Maybe I need another increase this week.

I don't like when I have to increase my medicine. To me it seems like I am getting worse when I have too. I have not been eating very good either. Eating the wrong things. I had stopped drinking all pop including diet pop. Well last week I was drinking pop. I felt blotted all last week. That could have caused my shortness of breath too.

Some weeks it is hard just trying to deal with my illness on a daily basis. Some days I don't think much about it. Just depends on how I am feeling. My husband is great all the time. He always puts me first no matter what is going on that day. Sometimes I feel guilty for as much as he does for me.

I feel I am all over the place with what is going through my head today. Yes I think about my illness and think of things that I could do if I wasn't sick. I remember how active I was before I was sick. Then I think of how it has changed my life in good ways from getting sick. I have been able to be home for my son. Now I am able to home school him. Some days that is a blessing and some days it isn't.

I just have to take it one day at a time. Have to take the good days with the bad days. I just keep giving it to God and thanking him for everyday he gives me to be with my family. Even on the days that I am ready to wring all of their necks.

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.

Saturday, January 31, 2009

Is It Ok To Be Angry With God

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.

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.

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.

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.