Well, I just knew that a day would come when I would want to go back to that sermon that Pastor Henrichs gave months ago and it's Saturday and the copies that I made of it are in my desk drawer at work so I backtracked through the blog posts of the past and I found it. As I was looking for it, I also had a chance to reflect on all the ups and downs that have been part of this journey/diagnosis. The comfort for me can be found in the next paragraph that I took right from the sermon. These are not my words but my Pastor's.
But the Lord did not leave Paul empty-handed in his suffering. He didn’t tell Paul to toughen up or just “rub some dirt on it.” He gave him a wonderful promise—a promise from which Christians have drawn strength and comfort for two thousand years: Jesus said, “My grace is sufficient for you, for my power is made perfect in weakness.” The grace of Jesus Christ is sufficient. The grace of God that flows from the cross of Christ into your life is sufficient. It is enough. Nothing more is needed. The power of Jesus is perfected when you are at your weakest. “When I am weak,” Paul writes, “then I am strong.”What about you? Do you believe that? Do you believe that the grace of Jesus Christ is sufficient—or is there something more that’s needed? When Paul heard those words from Jesus, all he had to do was reflect on the events of his own life to see that what Jesus said was true—to see that when he was at his weakest, Jesus was at His strongest. Paul had been beaten, flogged, stoned, shipwrecked, hungry, thirsty, naked, imprisoned and exhausted. But through it all, the grace and forgiveness of Jesus Christ had sustained him—compelled him—to keep on going.
Oh what comfort.
Saturday, February 27, 2010
Friday, February 26, 2010
I've got you covered...
You wouldn't think it would be hard to ask someone to pray for you.
It's fairly easy to say "could you keep my friend, parent, sister, child, childs friend...in your prayers" and of course, it is always received well and you know the prayers are being made.
However, turn the table, and say this "Could you pray for me?"
That is hard.
Why?
Because it is like saying "I can't do this alone." or "I need help." or "I am not well" or "I'm scared".
It would be a whole lot easier if we asked the question more often. "Could you pray for me?"
"I want to get to work safely" or "I need to make smart choices at the grocery store." or "I want to be a good role model for my children"...you know, the events that happen daily that we don't think about twice.
The other day my mom sent an email and she said "you know, we are always praying for you."
They pray for their children, grandchildren, friends, each other, every day.
No special requests need to go to my mom and dad. They have me covered, daily.
So, to you my friends, I am going to pray for you today and tomorrow, daily. Not because you are sick or need help just because you are worth praying for.
May your day be blessed and may you see those blessings through all of lifes events.
Now, if your day comes and you need an extra prayer, I hope it will be easier for you to ask. I know it will be nice for me to be able to say to you..."No special requests needed. I've got you covered. You are in my prayers everyday." I learned that lovely life lesson this week from my mom.
Happy Friday...I've got you covered.
It's fairly easy to say "could you keep my friend, parent, sister, child, childs friend...in your prayers" and of course, it is always received well and you know the prayers are being made.
However, turn the table, and say this "Could you pray for me?"
That is hard.
Why?
Because it is like saying "I can't do this alone." or "I need help." or "I am not well" or "I'm scared".
It would be a whole lot easier if we asked the question more often. "Could you pray for me?"
"I want to get to work safely" or "I need to make smart choices at the grocery store." or "I want to be a good role model for my children"...you know, the events that happen daily that we don't think about twice.
The other day my mom sent an email and she said "you know, we are always praying for you."
They pray for their children, grandchildren, friends, each other, every day.
No special requests need to go to my mom and dad. They have me covered, daily.
So, to you my friends, I am going to pray for you today and tomorrow, daily. Not because you are sick or need help just because you are worth praying for.
May your day be blessed and may you see those blessings through all of lifes events.
Now, if your day comes and you need an extra prayer, I hope it will be easier for you to ask. I know it will be nice for me to be able to say to you..."No special requests needed. I've got you covered. You are in my prayers everyday." I learned that lovely life lesson this week from my mom.
Happy Friday...I've got you covered.
Thursday, February 25, 2010
News is news...
This morning I spoke to Dr. Cohen and the news is news. That's it. I could create a story and worry about what it might mean or could be, but really....why? It is only what it is until we know more and then again, it will only be what it is, no more and no less.
Not all of the lab results are back yet but the ones that are complete are mostly normal. There are two inflammation tests that are not normal but they are not way out of whack either. The tests we are still waiting on are antibody tests. They will show if there is another autoimmune disease that is jealous and wanting to start a fight with my myositis. That is fairly common among autoimmune diseases.
Dr Cohen did speak to a lung specialist about my situation and I have an appointment with Dr. Dima Adl on Monday morning at 10:30.
The doctors agree that there is definitely something going on in my lungs. It is not in the tubes but in the muscle/meat of the lungs. It could be the disease or it could be an insidious(sp?) infection which means rare or unusual or it could be something else. Dr. Cohen believes in the ability of Dr. Adl and is pleased that she will see me as soon as Monday. She told me to try and have a great weekend and to keep worry at bay. She will call me when any other results come in.
Stay tuned for more information and insights from your favorite myositis patient, of course, I am assuming you know no one else with it.
Love,
Kris
Not all of the lab results are back yet but the ones that are complete are mostly normal. There are two inflammation tests that are not normal but they are not way out of whack either. The tests we are still waiting on are antibody tests. They will show if there is another autoimmune disease that is jealous and wanting to start a fight with my myositis. That is fairly common among autoimmune diseases.
Dr Cohen did speak to a lung specialist about my situation and I have an appointment with Dr. Dima Adl on Monday morning at 10:30.
The doctors agree that there is definitely something going on in my lungs. It is not in the tubes but in the muscle/meat of the lungs. It could be the disease or it could be an insidious(sp?) infection which means rare or unusual or it could be something else. Dr. Cohen believes in the ability of Dr. Adl and is pleased that she will see me as soon as Monday. She told me to try and have a great weekend and to keep worry at bay. She will call me when any other results come in.
Stay tuned for more information and insights from your favorite myositis patient, of course, I am assuming you know no one else with it.
Love,
Kris
On second thought....
During my appointment on Tuesday, Dr.Cohen said she would call me when she had the results of all the tests and had had the opportunity to talk with the pulmonologist. I was fine with that. It seemed like a good idea to have all the information so that a plan could also be part of that discussion. Then a day passed. One out of the 5-7 days that I am expecting to wait. I want to know something, anything...one piece at a time will be just fine with me. I called the doctor and left a message yesterday afternoon saying just that. Hopefully I will hear something today. To help feed my head with knowledge and put things into perspective I did some google searching....don't do it. I should have listened to Bill when he said, "stay away from the internet today. The doctor will tell you everything you need to know."
Last night I took a long hot shower and was in bed by 9:30. At 12:30 I was awake because my hands were achy. I came downstairs (Bill was up decorating a cake and making cupcakes for a bake sale) took some advil and went back to bed. An hour later I was still laying there, wide awake so I got up and took my pillow to the couch downstairs and watched "American Idol"
3:00 AM passed, then 4:00 AM still awake.... 4:30 I went back upstairs to bed, turned off my alarm realizing perfectly well that sleeping or not sleeping I was not going to be able to get up and get to work at 8:00 AM. I did fall asleep sometime after 5:00 and I missed seeing the kids this morning before school. That makes for a lousy way to start a day. Their love and smiles and even the morning grumpiness that sometime shows it's face is all part of a wonderful way to start a day.
Today I missed it, tomorrow will be better.
Tomorrow will be better.
Last night I took a long hot shower and was in bed by 9:30. At 12:30 I was awake because my hands were achy. I came downstairs (Bill was up decorating a cake and making cupcakes for a bake sale) took some advil and went back to bed. An hour later I was still laying there, wide awake so I got up and took my pillow to the couch downstairs and watched "American Idol"
3:00 AM passed, then 4:00 AM still awake.... 4:30 I went back upstairs to bed, turned off my alarm realizing perfectly well that sleeping or not sleeping I was not going to be able to get up and get to work at 8:00 AM. I did fall asleep sometime after 5:00 and I missed seeing the kids this morning before school. That makes for a lousy way to start a day. Their love and smiles and even the morning grumpiness that sometime shows it's face is all part of a wonderful way to start a day.
Today I missed it, tomorrow will be better.
Tomorrow will be better.
Tuesday, February 23, 2010
Here's the update on my test results...
Last week my doctor ordered two tests to be repeated…a pulmonary function test and a CT scan of my lungs/chest. The reasoning for the order is because I have had a persistent cough in the mornings and I have been experiencing shortness of breath. This is most noticeable when I cough or walk up or down the stairs.
Today when I was at the doctor she shared the results of the CT scan. At this point there have been significant changes in the progression of the interstitial lung disease. The conclusion actually reads as follows:
1) Significant interval progression in interstitial lung disease with bibasilar ground glass air space and interstitial changes as well as scattered areas of linear interstitial and ground glass air space opacity peripherally in both upper lobes as well as the right middle lobe. A component of superimposed aspiration pneumonitis would not be excluded in the lower lobes or the lingual where the areas of opacities are the most confluent. Clinical correlation is suggested.
2) No pleural effusion
3) No adenopathy.
Of course I don’t understand any of the above, do you?
What I do know is that Dr. Cohen ordered some additional tests to be run when they run my normal labs. There may be an overlapping disease which is common in autoimmune diseases.
She did not receive the written results from the pulmonologist but will likely have them this afternoon. The results themselves, without the professional interpretation, show a decrease in my lung capacity and function since the test I had a year or so ago.
Once she has the results from the lab and has talked with the other doctors she will get back in touch with me to make a recommendation (5-7 days) Although my skin looks good and my muscles are working well, my joints (especially in my hands and wrists) and my lungs indicate the disease (myositis) is active. She wants me to start up on prednisone again but agreed to let me wait on that until she has all the facts.
If you would, say a prayer for me that helps take the worry away, give answers to the doctors and restores my health, it would be greatly appreciated.
Last Wednesday in church we sang “Abide with Me” during communion. A gentleman who we worship with had just received a diagnosis of cancer and I could see him singing at the communion rail. I have been meaning to write him a note, letting him know I have been thinking of him and praying for him. Isn’t this a beautiful line from the hymn…”Ills have no weight and tears no bitterness….I triumph still if Thou abide with me!” It even has an exclamation point.
Those are comforting words when you are not feeling well and the exclamation point make me want to say/sing it with confidence.
Love you.
Kris
Today when I was at the doctor she shared the results of the CT scan. At this point there have been significant changes in the progression of the interstitial lung disease. The conclusion actually reads as follows:
1) Significant interval progression in interstitial lung disease with bibasilar ground glass air space and interstitial changes as well as scattered areas of linear interstitial and ground glass air space opacity peripherally in both upper lobes as well as the right middle lobe. A component of superimposed aspiration pneumonitis would not be excluded in the lower lobes or the lingual where the areas of opacities are the most confluent. Clinical correlation is suggested.
2) No pleural effusion
3) No adenopathy.
Of course I don’t understand any of the above, do you?
What I do know is that Dr. Cohen ordered some additional tests to be run when they run my normal labs. There may be an overlapping disease which is common in autoimmune diseases.
She did not receive the written results from the pulmonologist but will likely have them this afternoon. The results themselves, without the professional interpretation, show a decrease in my lung capacity and function since the test I had a year or so ago.
Once she has the results from the lab and has talked with the other doctors she will get back in touch with me to make a recommendation (5-7 days) Although my skin looks good and my muscles are working well, my joints (especially in my hands and wrists) and my lungs indicate the disease (myositis) is active. She wants me to start up on prednisone again but agreed to let me wait on that until she has all the facts.
If you would, say a prayer for me that helps take the worry away, give answers to the doctors and restores my health, it would be greatly appreciated.
Last Wednesday in church we sang “Abide with Me” during communion. A gentleman who we worship with had just received a diagnosis of cancer and I could see him singing at the communion rail. I have been meaning to write him a note, letting him know I have been thinking of him and praying for him. Isn’t this a beautiful line from the hymn…”Ills have no weight and tears no bitterness….I triumph still if Thou abide with me!” It even has an exclamation point.
Those are comforting words when you are not feeling well and the exclamation point make me want to say/sing it with confidence.
Love you.
Kris
Tuesday, February 16, 2010
Update regarding my test of endurance
I was changing things up, working seven hour days instead of six hour days in hopes of getting the OK from my doctor next week to return to work full time. I worked four seven hour days and then two hours (still limited to 30 hours) in the first week. I worked two seven hour days the next week and that was it. I couldn't continue with that schedule. I guess I failed my test of endurance. I guess I am going to have to work my way into this. One seven hour day one week, then two seven hour days for awhile, add three when I am ready, etc.... It's going to take longer than I had hoped.
Tomorrow I am having a repeat pulimonary function test followed by a CT scan of my chest. This is being done to address the dry cough I have had for months as well as shortness of breath. Early in my disease I was diagnosed with interstatial lung disease. The lungs don't repair themselves but it is important to make sure they don't get any worse as well. I have base line pictures/tests for just about everything and that includes my lungs. More to follow on that in the days and weeks to come.
On a happier note, last week Tuesday we got a lot of snow. So much that Jake's after school program was cancelled. When he got off the school bus I was already dressed in my winter play clothes (long underwear, hat, scarf, gloves, etc...) and that is exactly what we did. We played in the snow. We played tag, made snow angels, wrestled, etc... When Emma got home from school the fun continued for another 15-20 minutes. This is an afternoon I won't soon forget and I really hope they don't either. When Jake got off the bus on Wednesday, Thursday and Friday he asked each afternoon if I could play again...I couldn't, that 45 minutes on Tuesday wiped me out for nearly the whole week. It's really sad for me to have to say no to something that's good for both of us and really fun for both of us. That is certainly a more difficult "endurance test" to fail. As I look at my goal and things to aspire too, being active with my family will have to take priority over returning to work full-time. Remind me of that if you see me going in the wrong direction.
Have a great day.
Kris
Tomorrow I am having a repeat pulimonary function test followed by a CT scan of my chest. This is being done to address the dry cough I have had for months as well as shortness of breath. Early in my disease I was diagnosed with interstatial lung disease. The lungs don't repair themselves but it is important to make sure they don't get any worse as well. I have base line pictures/tests for just about everything and that includes my lungs. More to follow on that in the days and weeks to come.
On a happier note, last week Tuesday we got a lot of snow. So much that Jake's after school program was cancelled. When he got off the school bus I was already dressed in my winter play clothes (long underwear, hat, scarf, gloves, etc...) and that is exactly what we did. We played in the snow. We played tag, made snow angels, wrestled, etc... When Emma got home from school the fun continued for another 15-20 minutes. This is an afternoon I won't soon forget and I really hope they don't either. When Jake got off the bus on Wednesday, Thursday and Friday he asked each afternoon if I could play again...I couldn't, that 45 minutes on Tuesday wiped me out for nearly the whole week. It's really sad for me to have to say no to something that's good for both of us and really fun for both of us. That is certainly a more difficult "endurance test" to fail. As I look at my goal and things to aspire too, being active with my family will have to take priority over returning to work full-time. Remind me of that if you see me going in the wrong direction.
Have a great day.
Kris
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