The title of this entry is a mantra I share with a friend. Some days it is how I feel about the reality of our life around here. Most moments I stay in the positive and count my blessings and miracles. But there are moments, okay days, where it all just feels overwhelming and unfair. This is when I feel just as the title says and I scream, "CHRONIC SUCKS!". The best part is that God understands, expects and allows me to walk through those feelings. He watches me struggle through and finish my tantrum. Much like I work to do with my kids, he patiently waits as I stomp my feet, scream and cry. Then, when I have exhausted myself, he scoops me up into His arms. He soothes me with His love and tells me all is okay. He reminds He is there and He is my strength. That is the awesomeness of God!
On a side note, we got the results back from Dr. T about Ricks' autoimmune disease testing. Most of the results looked good. There was one, the neutrophils, that was high. I guess these are a marker of inflammation and so this shows that there is some kind of inflammation some where. Dr. T recommends we see a rheumatologist for further testing. He said his tests really look inside the box and with all things considered we need to look inside and outside the box. So we wait to hear from Dr. T about who is the best rheumatologist for Ricks to go to. Then we add another specialist to our list. Ricks is joining Maggie in having his own medical team. The thought of 2 kids and 2 medical teams really exhausts me. As I said, sometimes chronic sucks.
Maggie is so frayed and done feeling sick. She bruised her tummy on the 4th. With all her issues, I thought it best we have the pediatrician check it out. All looked fine but Maggie's anxiety was high. She was scared that they would have to do more medical interventions or IV's. After her appointment, she had a little bit of an emotional breakdown. It was short-lived and we talked our way through it. During the talk, she told me she is sad to feel sick all the time. It makes her worry about what the doctors will do or if they will ever fix it. Talk about breaking a mother's heart! In the end, I calmed her and she moved on.
It seems she is getting worse and there is no resolution in sight. I told her pediatrician today that I feel as if there will never be an answer. That she will just have this head pain for the rest of her life. He looked a bit taken aback but did agree that she may be ill a lot in her life. His recommendation is she has to learn how to be happy and successful in spite of her health. I totally agree but will she still be ill with this infection? He did not seem to think all was hopeless but there are moments when it feels that way. As I said, chronic sucks.
Yes, at this moment, I am feeling a bit more on the half empty side of the table. I just want a moment of health and peace in this family. I want not to have to manage and organize medical appointments, doctors or test results. I want two kids who feel healthy and don't need 5 medicines to help manage the day. I know that my wants are not truly realistic at this time. I hope someday to get there for me, Rick and the kids. I also know that God is waiting for me to finish my tantrum. He is waiting with open arms to remind me of all my blessings and miracles.
Wednesday, July 6, 2011
Sunday, July 3, 2011
Looking Back
I was reminded tonight of some of the places I have been. It was a great reality check of how far I have come in life. The bottom line is that I never knew I could be so blessed and so happy. How grateful I am!
Friday, July 1, 2011
Mantras
There have been a few different mantras I have come across lately in my mediation book. They have really helped me lately. I have reread them numerous times and they have put life into perspective. Each one has had its moment and reminded me of a few key points: stay in the present, gratitude, let go and have faith. I wanted to share a some of them:
It is not your circumstances that need altering so much as yourself.
There is a beauty in a God-guided life.
You need to be constantly recharged by the power of the spirit of God.
Take a blessing whereever you go.
You can prove to yourself that life is basically and fundamentally an inner attitude.
God has things planned for you, far beyond what you can imagine now.
Only now belongs to us.
This one really rings true - If you can take your troubles as they come, if you can maintain your calm and composure amid pressing duties and unending engagements, if you can rise above the distressing and disturbing circumstances in which you are set down, you have discovered a priceless secret of daily living.
And my favorite as of right now - Learn daily the lesson of trust and calm in the midst of the storms of life.
The last one is what I am really working on. To have trust and stay serene even on the worst day. I am not always perfect but I do sincerely try.
It is not your circumstances that need altering so much as yourself.
There is a beauty in a God-guided life.
You need to be constantly recharged by the power of the spirit of God.
Take a blessing whereever you go.
You can prove to yourself that life is basically and fundamentally an inner attitude.
God has things planned for you, far beyond what you can imagine now.
Only now belongs to us.
This one really rings true - If you can take your troubles as they come, if you can maintain your calm and composure amid pressing duties and unending engagements, if you can rise above the distressing and disturbing circumstances in which you are set down, you have discovered a priceless secret of daily living.
And my favorite as of right now - Learn daily the lesson of trust and calm in the midst of the storms of life.
The last one is what I am really working on. To have trust and stay serene even on the worst day. I am not always perfect but I do sincerely try.
Thursday, June 30, 2011
Shout It Out
A memo to my husband:
I know you hate emails and blogs but I am sometimes better at expressing myself when I write. And yes I am forcing you to read this as I did my previous letter. It is all part of my charm : ) I also want to shout it out to the world (or at least the few who happen to read my blog) that you are the most awesome husband a woman could ever hope for.
We have had our share of ups and downs. Lately we hit a few bumps along the way with life happening as life tends to do. There were moments we were not very patient or kind with each other. We snapped and sniped about the everyday and the not so everyday moments. It was not the life we wanted or promised in October of 2005 as we said those vows in front of family and friends.
In those same vows we promised for better or worse. So this was one of the "worse" moments and we had a decision of which way to go. You stood tall and stepped up. Together we talked, not only about what was best for us, but what was best for our children. The past couple of months, you have worked hard to do whatever you can to make the worse into the better. I have watched you change and grow. You have faced some fears and challenges with courage and strength.
When I tried to explain to someone about where we were at I had a hard time. I just couldn't find the right words to verbalize how our relationship has changed. It is no longer that "head over heels"/"you complete me" place. I tried talking about the connection/emotion part but I just couldn't quite put my finger on it. Last night and today when we talked it popped into my head like a light bulb. You are, and have been since the moment we started, my best friend. I know you feel the same because of our talks and our song (Best Friend by Queen).
When we met and fell in love I had expectations of what "love" and "marriage" was. I watched my family and friends, putting the same expectations on us. That was were I went wrong. On this journey I have learned that we are very different from all those I have seen or experienced. We are not the mushy love or cuddly love. I don't ever feel we will fit into that overemoting (although I am a bit overemotional sometimes). I don't see us in that category of the couples who are "so in love". Our relationship is built on friendship so deep and so connected. I don't make sense without you because you somehow ground me. Our love is a deep-rooted strength that just is. It keeps me safe, confident and strong. It is comfortable and warm. We will hit rough waters again but I know that what we have built is strong enough to hold us together. No matter what comes our way we will face it and grow stronger.
I love you with all that I am. You are my rock, my sense and my safe haven. I know that no matter what I say or do, in the end it is your arms that will make it all better.
Love,
Suzi
I know you hate emails and blogs but I am sometimes better at expressing myself when I write. And yes I am forcing you to read this as I did my previous letter. It is all part of my charm : ) I also want to shout it out to the world (or at least the few who happen to read my blog) that you are the most awesome husband a woman could ever hope for.
We have had our share of ups and downs. Lately we hit a few bumps along the way with life happening as life tends to do. There were moments we were not very patient or kind with each other. We snapped and sniped about the everyday and the not so everyday moments. It was not the life we wanted or promised in October of 2005 as we said those vows in front of family and friends.
In those same vows we promised for better or worse. So this was one of the "worse" moments and we had a decision of which way to go. You stood tall and stepped up. Together we talked, not only about what was best for us, but what was best for our children. The past couple of months, you have worked hard to do whatever you can to make the worse into the better. I have watched you change and grow. You have faced some fears and challenges with courage and strength.
When I tried to explain to someone about where we were at I had a hard time. I just couldn't find the right words to verbalize how our relationship has changed. It is no longer that "head over heels"/"you complete me" place. I tried talking about the connection/emotion part but I just couldn't quite put my finger on it. Last night and today when we talked it popped into my head like a light bulb. You are, and have been since the moment we started, my best friend. I know you feel the same because of our talks and our song (Best Friend by Queen).
When we met and fell in love I had expectations of what "love" and "marriage" was. I watched my family and friends, putting the same expectations on us. That was were I went wrong. On this journey I have learned that we are very different from all those I have seen or experienced. We are not the mushy love or cuddly love. I don't ever feel we will fit into that overemoting (although I am a bit overemotional sometimes). I don't see us in that category of the couples who are "so in love". Our relationship is built on friendship so deep and so connected. I don't make sense without you because you somehow ground me. Our love is a deep-rooted strength that just is. It keeps me safe, confident and strong. It is comfortable and warm. We will hit rough waters again but I know that what we have built is strong enough to hold us together. No matter what comes our way we will face it and grow stronger.
I love you with all that I am. You are my rock, my sense and my safe haven. I know that no matter what I say or do, in the end it is your arms that will make it all better.
Love,
Suzi
Tuesday, June 28, 2011
Support and Encouragement
The past couple of days have been a bit rough. Ricks' appointment through me for a loop and Maggie has had a tough couple of days. This morning she spent over an hour on the couch because her head hurt. She cried a bit and just "needed a rest". I have felt a bit down, overwhelmed and exhausted. Even so, I have done all the footwork I can and handed the rest to God.
I am so grateful for the special people God has placed in my life. I have gotten great support from friends. People have understood and encouraged. Tonight I had a conversation with a friend who reminded me of all the growth I have gone through. She reminded how the fear and anxiety used to take over. I thought about all those days where the fear gripped my stomach and didn't let go. Today, even though it wasn't one of my best, I felt a peace and calmness. I know that whatever happens it will all be okay. So even in my darkest moments, there is still a light of hope.
The best part of the past 24 hours is my husband. Rick and I are very different people. I am the feeler and he is the thinker. Sometimes it is hard to communicate especially during stressful times. With some work and commitment, we have been learning how to change our patterns. The reward for hard work has been the past 24 hours. I have struggled and Rick has been there. We work as a team and stay positive. Without his love and support, things would have felt much worse.
Tonight I feel much more optimistic. I have used the tools I have, leaned on others and relied on my faith. The equilibrium has returned!
I am so grateful for the special people God has placed in my life. I have gotten great support from friends. People have understood and encouraged. Tonight I had a conversation with a friend who reminded me of all the growth I have gone through. She reminded how the fear and anxiety used to take over. I thought about all those days where the fear gripped my stomach and didn't let go. Today, even though it wasn't one of my best, I felt a peace and calmness. I know that whatever happens it will all be okay. So even in my darkest moments, there is still a light of hope.
The best part of the past 24 hours is my husband. Rick and I are very different people. I am the feeler and he is the thinker. Sometimes it is hard to communicate especially during stressful times. With some work and commitment, we have been learning how to change our patterns. The reward for hard work has been the past 24 hours. I have struggled and Rick has been there. We work as a team and stay positive. Without his love and support, things would have felt much worse.
Tonight I feel much more optimistic. I have used the tools I have, leaned on others and relied on my faith. The equilibrium has returned!
Counting
10 weeks and counting.....10 weeks of head pain, fevers, medicine, tears and frustration.....10 weeks of hope, prayers, faith and strength.....10 weeks of looking for answers or plans or something to make it better.....10 weeks of a broken hearts as it continues.....10 weeks of challenges and growth.....10 weeks of support, listening ears and new friends.....10 weeks and no resolution......10 weeks.
Monday, June 27, 2011
Autoimmune
I don't even where to start tonight. I wasn't even sure if I wanted to blog but it always seems to help. Ricks went to Dr. T today for his "red ear" issue. When we went before it was mentioned that it could be an autoimmune disease. Today after further discussion and an exam, Dr. T is feeling it is most likely an autoimmune disease. He rattled off some name and in the past I would have written down for research later. Right now I will just go with his explanation of what "may" be happening. Ricks' immune system may be attacking the cartilage in his body, more specifically his ears.
I am overwhelmed in so many ways. How do you process that your 2 year old's immune system is basically attacking his body? I can't even begin to think of what all of this "could" mean in the future. I will put that aside until we have further information. Selfishly, my gut felt as if I had been punched in the stomach. This is one more thing I have to learn about, manage and parent through. It is one more doctor/specialist I need to communicate with and more medicine to dispense. Some days I wonder how I can do what I do now? How do I continue to manage it all now? So the thought of adding on more condition and all it brings sends me into overdrive?
The best part is Maggie's favorite nurse, Nicole, asked how Mags was. Dr. T overheard me saying she is struggling and feeling worse. My feeling it is because she is no longer on a consistent regime of ibuprofen. The Tyenol I have been giving her has been useless and she is feeling the pain. I told Dr. T I am not sure it is even worth it to bring her back to him because there is not much more he can do. He agreed and said her next stop is the ENT. At the same time, I could see his mind working over the information on the ibuprofen. He told me that if Ricks' blood test show an autoimmune concern, we need to test Maggie. After all this time, it could be because of an autoimmune? One more option and hope we may figure out how to get rid of her crazy head pain!
I forgot to mention what we are doing about this autoimmune issue. Today we went from Dr. T to the lab so Ricks' could give 3 vials of blood. The results come back in a week and we meet with Dr. T on Tuesday. If there is a concern, we head to a rheumatologist to find out the next step. There is nothing I can do at the moment. I have taken all the needed steps and we wait for the answers. I am still going a bit crazy and feeling a bit scared. The emotions in my heart are hitting my stomach and sticking in my throat. It feels a bit big to have 2 kids (actually my 2 babies) with some pretty big medical questions out there.
Thank God for His strength and presence. I just trying to be and know in my heart He has my back. He is holding us all in the palm of His hand. I don't need to worry but to have faith that it will all turn out as it will. Even if we get the worst news possible, God will be there to walk us through. The key to serenity is not to worry about the future and all the what ifs. They will come in time. I have to just stay in the present and chose life. I can't control the tests or the outcomes but I can live my life with gratitude for the blessings and gifts. My kids may have major medical concerns or procedures on the horizon but for today I will just love them up. All of that "stuff" is not as important as providing them a happy and stable family. Let go and let God as they say! Tonight I do my basic retreat when we get medical news that throws me for a loop - a bath, some prayer/mediation and a good night's sleep. Tomorrow I enjoy a day full of playing and laughing with these 2 amazing kids God blessed me with : )
I am overwhelmed in so many ways. How do you process that your 2 year old's immune system is basically attacking his body? I can't even begin to think of what all of this "could" mean in the future. I will put that aside until we have further information. Selfishly, my gut felt as if I had been punched in the stomach. This is one more thing I have to learn about, manage and parent through. It is one more doctor/specialist I need to communicate with and more medicine to dispense. Some days I wonder how I can do what I do now? How do I continue to manage it all now? So the thought of adding on more condition and all it brings sends me into overdrive?
The best part is Maggie's favorite nurse, Nicole, asked how Mags was. Dr. T overheard me saying she is struggling and feeling worse. My feeling it is because she is no longer on a consistent regime of ibuprofen. The Tyenol I have been giving her has been useless and she is feeling the pain. I told Dr. T I am not sure it is even worth it to bring her back to him because there is not much more he can do. He agreed and said her next stop is the ENT. At the same time, I could see his mind working over the information on the ibuprofen. He told me that if Ricks' blood test show an autoimmune concern, we need to test Maggie. After all this time, it could be because of an autoimmune? One more option and hope we may figure out how to get rid of her crazy head pain!
I forgot to mention what we are doing about this autoimmune issue. Today we went from Dr. T to the lab so Ricks' could give 3 vials of blood. The results come back in a week and we meet with Dr. T on Tuesday. If there is a concern, we head to a rheumatologist to find out the next step. There is nothing I can do at the moment. I have taken all the needed steps and we wait for the answers. I am still going a bit crazy and feeling a bit scared. The emotions in my heart are hitting my stomach and sticking in my throat. It feels a bit big to have 2 kids (actually my 2 babies) with some pretty big medical questions out there.
Thank God for His strength and presence. I just trying to be and know in my heart He has my back. He is holding us all in the palm of His hand. I don't need to worry but to have faith that it will all turn out as it will. Even if we get the worst news possible, God will be there to walk us through. The key to serenity is not to worry about the future and all the what ifs. They will come in time. I have to just stay in the present and chose life. I can't control the tests or the outcomes but I can live my life with gratitude for the blessings and gifts. My kids may have major medical concerns or procedures on the horizon but for today I will just love them up. All of that "stuff" is not as important as providing them a happy and stable family. Let go and let God as they say! Tonight I do my basic retreat when we get medical news that throws me for a loop - a bath, some prayer/mediation and a good night's sleep. Tomorrow I enjoy a day full of playing and laughing with these 2 amazing kids God blessed me with : )
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