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?
Tuesday, August 4, 2009
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!
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.
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!!
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.
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.
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.
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.
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