I saw the pulmunologist today.ni have something going on with my lungs which he suspicions is Neal infection of some kind. I will have a bronchoscope on Friday and they will culture the infection to see how best to treat it. They also found some scarring and a couple of small cysts.
When I told him that I tried to hike Saturday and it was probably the hardest 7 some miles I have ever hiked, he was amazed, he told me I had more "stick to it-ness" than anyone he knew. So I guess I should perhaps stop beating myself up for being a wimp on the hike.
I explained that I had the annual church camp out this weekend. He told me that I could not go on Friday, but he would clear me to go with no restrictions from Saturday on. That made me very happy. I would not have wanted to miss the camp out two years in a row.
So I have arranged for my ride on Friday to the hospital since they will be putting me under and will try to have everything packed and ready to go by tomorrow. I also have the music and the sermon to finish up for the camp out service. And of course food to pack both for me and for the potluck.
I am looking forward to getting out there and enjoying some time relaxing in nature with friends. Not only that but it have 9 people scheduled for baptism after the service. There are some really exciting things going on during the camp out and I am very thankful to be a part of it.
It is 8pm and I have just finished up treatment. Tomorrow I will recover from the side effects and get my sermon and music done and get everything printed out and ready to go. It will be a very full day and Friday will be full as well.
I have to say that life is never dull around here. But as always God is big enough, loving enough, strong enough and wise enough to meet me right where I am. And that peace is filling my heart tonight.
So grateful for the love of God which lifts me up, heals me, comforts me and stretches me. Tonight I am singing "I will trust in you ..."
just Connie
Wednesday, August 30, 2017
Sunday, August 27, 2017
Ouch
As a pastor, I have found over the years that we are great targets. You cannot please everyone and everyone has an opinion and usually I can let things just roll off without too much pain involved.
But today as I came into service, I knew I was struggling physically. I was very nauseous, struggling with my breathing, but ready to worship and to celebrate. I knew when I was diagnosed that there would be people who would be frightened for me, people who would be sure that they knew what I should do, how much rest I needed, etc. I have also said that when the pastor is sick the church gets twitchy. But the Church for the most part has surprised and blessed me by their love and support.
Today, some of the roosters came home to rest so to speak. I heard that there were those who feel I need to just go home, let someone else pastor and get better. What they do not understand is that first of all I am called to this church and this community. I am not only called of God, that call is recognized and affirmed by my denomination. Secondly, I will not get better if I just go home and rest. It is the opposite of what I need. Spiritually, physically and emotionally I need to answer the call of ministry, I need to push myself and keep moving ahead. Every Dr I have is in full agreement.
I was still processing the information I had been given when I got a complaint about my preaching. That one really surprised me and I have to say was really discouraging. I left the church feeling very alone and very hurt. My brain reminds me that this is a normal part of leadership, but right now my emotions are beating me up.
But the thing I know is that as I pray about it, God will let the truth rise up out of all the other stuff. So tonight I am thinking, praying and let God weigh in on everything. He is big enough for this and I am so very grateful.
Just Connie
But today as I came into service, I knew I was struggling physically. I was very nauseous, struggling with my breathing, but ready to worship and to celebrate. I knew when I was diagnosed that there would be people who would be frightened for me, people who would be sure that they knew what I should do, how much rest I needed, etc. I have also said that when the pastor is sick the church gets twitchy. But the Church for the most part has surprised and blessed me by their love and support.
Today, some of the roosters came home to rest so to speak. I heard that there were those who feel I need to just go home, let someone else pastor and get better. What they do not understand is that first of all I am called to this church and this community. I am not only called of God, that call is recognized and affirmed by my denomination. Secondly, I will not get better if I just go home and rest. It is the opposite of what I need. Spiritually, physically and emotionally I need to answer the call of ministry, I need to push myself and keep moving ahead. Every Dr I have is in full agreement.
I was still processing the information I had been given when I got a complaint about my preaching. That one really surprised me and I have to say was really discouraging. I left the church feeling very alone and very hurt. My brain reminds me that this is a normal part of leadership, but right now my emotions are beating me up.
But the thing I know is that as I pray about it, God will let the truth rise up out of all the other stuff. So tonight I am thinking, praying and let God weigh in on everything. He is big enough for this and I am so very grateful.
Just Connie
The Hike
As I have journeyed through my health crisis over the past few years I have made several commitments. One of those commitments has been to keep moving and stay active. The doctors all say that this is the right thing to do and will not only help me in the short term but has great long term benefits for my lungs and immune system. I have also found that getting outdoors breathes life into me.
I have been struggling with lung function over the past couple weeks and have recently had to go back on night time oxygen. But I have really been feeling the need to get outside and soak up some of Gods beautiful creation. So yesterday I packed up and went hiking with a friend to a hike I have done many times.
The air was a bit smoky from the wild fires in the Mt Jefferson Wilderness area, but I was not that concerned. I brought my inhaler and a nebulizer with me if needed. And oh my goodness ... Did I end up needing them.
I began struggling pretty early in the hike and was making frequents stops, trying to slow down my breathing and take deeper breaths. At about 3.5 miles my hiking partner looked at me and said, "You need to sit down." And it was at that point the nausea hit like a sledge hammer and right behind that came the overwhelming feeling of discouragement. Suddenly I was so done with being sick all the time, struggling with things that should be easy and sick and tired of being sick and tired.
As usual my hiking partner was wonderful, supportive and wise ... We turned around and headed back. I got to the car and did two back to back breathing treatments and began to do better. We went to dinner (which stayed down) thanks to my great anti nausea drugs and enjoyed some time poking through the shops next to the restaurant.
As I have been thinking about the hike, I am blessed by the beauty that we saw, blessed by a great friendship and realizing that I have pretty high expectations of myself. I still have this feeling that I should have been able to finish the hike I have done so many times in the past. My brain tells me that is unreasonable, but my emotions are telling me I am a wimp and I need to push harder.
So tonight I am thinking and feeling and sorting things out.....
Just Connie
I have been struggling with lung function over the past couple weeks and have recently had to go back on night time oxygen. But I have really been feeling the need to get outside and soak up some of Gods beautiful creation. So yesterday I packed up and went hiking with a friend to a hike I have done many times.
The air was a bit smoky from the wild fires in the Mt Jefferson Wilderness area, but I was not that concerned. I brought my inhaler and a nebulizer with me if needed. And oh my goodness ... Did I end up needing them.
I began struggling pretty early in the hike and was making frequents stops, trying to slow down my breathing and take deeper breaths. At about 3.5 miles my hiking partner looked at me and said, "You need to sit down." And it was at that point the nausea hit like a sledge hammer and right behind that came the overwhelming feeling of discouragement. Suddenly I was so done with being sick all the time, struggling with things that should be easy and sick and tired of being sick and tired.
As usual my hiking partner was wonderful, supportive and wise ... We turned around and headed back. I got to the car and did two back to back breathing treatments and began to do better. We went to dinner (which stayed down) thanks to my great anti nausea drugs and enjoyed some time poking through the shops next to the restaurant.
As I have been thinking about the hike, I am blessed by the beauty that we saw, blessed by a great friendship and realizing that I have pretty high expectations of myself. I still have this feeling that I should have been able to finish the hike I have done so many times in the past. My brain tells me that is unreasonable, but my emotions are telling me I am a wimp and I need to push harder.
So tonight I am thinking and feeling and sorting things out.....
Just Connie
Wednesday, August 16, 2017
The Dark Forest
I love the town I live in. I love the people, I love the culture, I love the way that they have embraced me and supported me as I have walked this journey. From flowers on my door step to a ton of stove pellets, to food that is so often dropped off for me. All of it reminding me that they love me and I am not alone. I am so very grateful for each and everyone of them.
I have been holding tight to this today because I have found that I am pretty weepy today. I know that 99% is probably the plethora of drugs running through my body since not only is today a treatment day, but my steroids have been bumped back up. But I do not like days like this when I am just curled up in a ball crying. I feel very alone, though my head reminds me that I am not. But yet the feelings persist. I am positive that it will be better tomorrow, but tonight is hard.
I am finding that so much of this journey is just toughing it out until it is better. Some days that seems easier to do than other days. Today is one of the hards ones ... But yet I know that am loved and cared for, by friends, family and most of all by God. It is standing in the dark, believing with every fiber of my being that the light is there. I just need to take another step forward out of the dark forest.
Weeping may last for the night time, but in the morning comes joy,
Waiting for the dawn ...
Jus Connie
I have been holding tight to this today because I have found that I am pretty weepy today. I know that 99% is probably the plethora of drugs running through my body since not only is today a treatment day, but my steroids have been bumped back up. But I do not like days like this when I am just curled up in a ball crying. I feel very alone, though my head reminds me that I am not. But yet the feelings persist. I am positive that it will be better tomorrow, but tonight is hard.
I am finding that so much of this journey is just toughing it out until it is better. Some days that seems easier to do than other days. Today is one of the hards ones ... But yet I know that am loved and cared for, by friends, family and most of all by God. It is standing in the dark, believing with every fiber of my being that the light is there. I just need to take another step forward out of the dark forest.
Weeping may last for the night time, but in the morning comes joy,
Waiting for the dawn ...
Jus Connie
Tuesday, August 15, 2017
Blood Test News
Soooooo ..... just had a phone call from my immunologist with my latest blood test results. Instead if the hoped for and anticipated big jump in my antibody levels I only showed a 20 point increase. That means in 4 months I have only increased 44 points. The Dr is not sure why I am not increasing like I should be. He said for my weight I should have reached a therapeutic level months ago. He also said for the first time today he is not sure he can get it up to where he would like it to be.
But I do know that I am better than I was a year ago and I am having fewer infections even though I was just treated for one last week. My antibodies have gone from the 200's into the 600's so there is improvement. Just not much over the past 4 months.
So tonight I am feeling the feelings, disappointment, a bit of discouragement and of course a bit of apprehension over what the increase in treatment will do to my side effects.
However, I remain committed to the fact that this is abut the journey not the destination. I am thankful for the many, many prayers that are being lifted for me by so many people around the world. It makes an incredible difference to me and in me.
Thank you for your love, prayers and support you make a difference in my life.
Just Connie
But I do know that I am better than I was a year ago and I am having fewer infections even though I was just treated for one last week. My antibodies have gone from the 200's into the 600's so there is improvement. Just not much over the past 4 months.
So tonight I am feeling the feelings, disappointment, a bit of discouragement and of course a bit of apprehension over what the increase in treatment will do to my side effects.
However, I remain committed to the fact that this is abut the journey not the destination. I am thankful for the many, many prayers that are being lifted for me by so many people around the world. It makes an incredible difference to me and in me.
Thank you for your love, prayers and support you make a difference in my life.
Just Connie
Monday, August 7, 2017
A Good Thing
I have been reminded all to clearly this past week of the heavy toll the steroids take on my body. Because of the increase in steroids, I am back on insulin to control my blood sugar. I find myself getting very emotional which is not like me. These crying jags are very distressing to me on every level. But I am hopeful that I am beginning to adjust and some of the emotional side effects will begin to lessen.
Because the reality is that regardless of how I feel, I have work to do. I have sermons to write, people to counsel, staff to meet with, mentor meetings that need to happen and community meetings to be a part of. I also have classes to teach at the fire hall and some committee fires to put out as well. I keep pointing out to God that really and truly I do not have time to be this sick. And yet ... I am.
Yesterday, we kicked off a new Sunday School format for the month of August. The two people who are supposed to be leading it were gone ... Both of them, on the kick off day. That meant that I was in charge of getting all the adults and children together and trying to get everything done and being rather clueless about the whole thing.nAnd the entire time I was fighting nausea and intestinal issues. From there I went right into service. But I did send one of the students across the street for a diet 7-up hoping that would baby my stomach through the service. And yet service was good. I am so glad it is not dependent on me and h I feel. I made it through the sermon and everything seemed to go fine. Then I went home and was sick, sick, sick all afternoon.
Today I was feeling better, just in time for another treatment. Sigh ... It is hard to tell right now what is the treatment, what is the infection and what is attributable to the extra drugs I am taking. So I will just keep on doing what I can, take one step in from of the other and pray that all of these drugs are beginning to work. and I am praying for the time to do the work that needs to be done.
I guess anything that drives me to my knees to pray more is actually a good thing ..
Just Connie
Because the reality is that regardless of how I feel, I have work to do. I have sermons to write, people to counsel, staff to meet with, mentor meetings that need to happen and community meetings to be a part of. I also have classes to teach at the fire hall and some committee fires to put out as well. I keep pointing out to God that really and truly I do not have time to be this sick. And yet ... I am.
Yesterday, we kicked off a new Sunday School format for the month of August. The two people who are supposed to be leading it were gone ... Both of them, on the kick off day. That meant that I was in charge of getting all the adults and children together and trying to get everything done and being rather clueless about the whole thing.nAnd the entire time I was fighting nausea and intestinal issues. From there I went right into service. But I did send one of the students across the street for a diet 7-up hoping that would baby my stomach through the service. And yet service was good. I am so glad it is not dependent on me and h I feel. I made it through the sermon and everything seemed to go fine. Then I went home and was sick, sick, sick all afternoon.
Today I was feeling better, just in time for another treatment. Sigh ... It is hard to tell right now what is the treatment, what is the infection and what is attributable to the extra drugs I am taking. So I will just keep on doing what I can, take one step in from of the other and pray that all of these drugs are beginning to work. and I am praying for the time to do the work that needs to be done.
I guess anything that drives me to my knees to pray more is actually a good thing ..
Just Connie
Friday, August 4, 2017
Sick of Being Sick
When the Pulmonologist office called to tell me they were calling in an additional antibiotic, I realized that I only had a few minutes to get there before they closed for lunch. So I threw things together for a quick trip to the neighboring town to pick up the antibiotic and to pick up the insulin which I am forced to go back on because of the increase in the steroids.
The good news is that they had the insulin ready for me. The bad news was they could not get the antibiotic until Monday. The really bad news was that I found myself tearing up when she told me that. She offered to call some of the McMinnville places to see if any of them had it in stock. Albertson Pharmacy did, so I got back into my 150 degree car (because the air conditioner is not working) and headed to McMinnville. 25 minutes later I was standing at the pharmacy counter as they explained it would take them 25 minutes to fill the order. I staggered to the nearest chair, put my sunglasses on and cried. I felt like an absolute idiot, but there I was at Albertsons crying.
When they finally called for my name, took all of my insurance information and gave me the antibiotics I headed to the car before I could socially embarrass myself any more than I already had. I got back into the 150 degree car and headed home.
So now I have the drugs that will get me through the weekend. Hopefully getting my blood sugar and the infection under control with help with my rollercoaster of emotions. I am just so sick of being sick today. All of this seems way too familiar. And yes I remember that all my doctors told me I was not done with infections and they would come back ... but I was so hopeful they were wrong or at least there would be a longer break than I have had. I also realize that I am tired and I am sick. And emotions are effected by our bodies and the drugs we pour into them. It is just not like me to feel sooooo ... well overwhelmed with everything and so grieved at the things I have not been able to do this past week. Things that not only were important to me, but important to others as well. I feel like I have let them down.
So tonight I am taking my meds, rehydrating and going to try to get some good sleep. I am also looking for the Comforter and will try to attune myself for what God wants to say to my hurting heart.
Just Connie
The good news is that they had the insulin ready for me. The bad news was they could not get the antibiotic until Monday. The really bad news was that I found myself tearing up when she told me that. She offered to call some of the McMinnville places to see if any of them had it in stock. Albertson Pharmacy did, so I got back into my 150 degree car (because the air conditioner is not working) and headed to McMinnville. 25 minutes later I was standing at the pharmacy counter as they explained it would take them 25 minutes to fill the order. I staggered to the nearest chair, put my sunglasses on and cried. I felt like an absolute idiot, but there I was at Albertsons crying.
When they finally called for my name, took all of my insurance information and gave me the antibiotics I headed to the car before I could socially embarrass myself any more than I already had. I got back into the 150 degree car and headed home.
So now I have the drugs that will get me through the weekend. Hopefully getting my blood sugar and the infection under control with help with my rollercoaster of emotions. I am just so sick of being sick today. All of this seems way too familiar. And yes I remember that all my doctors told me I was not done with infections and they would come back ... but I was so hopeful they were wrong or at least there would be a longer break than I have had. I also realize that I am tired and I am sick. And emotions are effected by our bodies and the drugs we pour into them. It is just not like me to feel sooooo ... well overwhelmed with everything and so grieved at the things I have not been able to do this past week. Things that not only were important to me, but important to others as well. I feel like I have let them down.
So tonight I am taking my meds, rehydrating and going to try to get some good sleep. I am also looking for the Comforter and will try to attune myself for what God wants to say to my hurting heart.
Just Connie
Thursday, August 3, 2017
Rest and Come To Me
Been down with a flu bug for a couple days. I thought I was doing somewhat better until I started throwing up this morning. Unfortunately that included my first round of pre meds for treatment.
But I kept moving through it and took round number two of the pre meds at the appropriate time when whispering prayers to please, please stop the throwing up.
My friend came to help me set the needles and I could tell I was tired, shaky and a bit dehydrated. But somehow all the pieces were put together and the needles were ready. Laying down on the bed, my friend Carolyn, carefully placed the needles and taped everything down. I put the 1st of two syringes in the pump started the pump.
As I was heading to bed to rest for the next 3 hours my pulmonologist called. My family Dr had asked me to contact him when he realized I had a flu bug and my lungs were down. His instructions to me were to go back to 40 MG prednisone for 6 days, 20 MG prednisone for 6 days and then hopefully back to 10 mg. He also reminded me to take my Zofran for the vomiting and stay hydrated which is very challenging when you are throwing up.
I am discouraged today, feel like I am going backward in my fight to get off steroids. And I am still feeling miserable today both from treatment and the flu bug.
I acknowledge that how we feel physically effects our emotions. .. even realizing that I just want to lay my head down and cry.
But I believe God has surrounded me with the best Dr's and incredible family and friends who are loving me and praying for me. That is a precious gift as I continue on this journey.
Tonight I am tired, thankful but tired... and God is whispering in my ear "that is okay. Rest and come to Me.
Just Connie
But I kept moving through it and took round number two of the pre meds at the appropriate time when whispering prayers to please, please stop the throwing up.
My friend came to help me set the needles and I could tell I was tired, shaky and a bit dehydrated. But somehow all the pieces were put together and the needles were ready. Laying down on the bed, my friend Carolyn, carefully placed the needles and taped everything down. I put the 1st of two syringes in the pump started the pump.
As I was heading to bed to rest for the next 3 hours my pulmonologist called. My family Dr had asked me to contact him when he realized I had a flu bug and my lungs were down. His instructions to me were to go back to 40 MG prednisone for 6 days, 20 MG prednisone for 6 days and then hopefully back to 10 mg. He also reminded me to take my Zofran for the vomiting and stay hydrated which is very challenging when you are throwing up.
I am discouraged today, feel like I am going backward in my fight to get off steroids. And I am still feeling miserable today both from treatment and the flu bug.
I acknowledge that how we feel physically effects our emotions. .. even realizing that I just want to lay my head down and cry.
But I believe God has surrounded me with the best Dr's and incredible family and friends who are loving me and praying for me. That is a precious gift as I continue on this journey.
Tonight I am tired, thankful but tired... and God is whispering in my ear "that is okay. Rest and come to Me.
Just Connie
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