It has been good to be feeling better and stronger. But I had a reminder this week that my lung issues are not gone. First of all I was allowed another small step down on the steroids, which thrills me because they cause so many side effects and I have been on them so long. But it has caused a small downturn in my peak flow. The last step down evened out over a couple of weeks and I expect that it will do the same thing this time. I also had one of those treatments where there is more side effects and one of them was I got a bit wheezy after treatment. I am still noticing a bit of a wheeze when I lay down, but I expect it to slowly improve as well.
All of my doctors have been reminding me that my asthma is not controlled. And intellectually I know that it is not magically healed, but it is hard to look at it objectively when I am feeling better, They are trying to get me on a brand new asthma drug. It has taken another step forward in the approval process and I am beginning to see the big picture of this new drug. It is very new and very expensive. I would have to go to the hospital once a month to receive it. My local hospital has never administered it before but they say they are willing. It is an odd feeling to find myself looking at yet more medication and I have to admit it makes me a bit uneasy.
But I am trusting my doctors, and expecting good things. I am placing the whole asthma medication in God's hands. If I need to have it, then it will be approved. If not, then block the approval process. And it is good to be able to just lay it the altar and leave it there.
So I continue to work on getting stronger, letting my lungs heal, get my voice back and try to be compliant with my doctors.
I am not sure which of those is the hardest .....
Just Connie
Friday, March 31, 2017
Monday, March 27, 2017
Hiking Cap Kiwanda
Saturday I went on a hike. It was a six mile hike at Cape Kiwanda. 1,000 straight up and 1,000 ft straight up. I was pretty nervous about how well my lungs would do. But I really wanted to give it a try.
So,we packed up and headed to Cape Kiwanda which is near Tillamook and Sand Lake. The rain stopped just as we got there. So we put our packs on, got Hope Puppy geared up and headed down the trail. It was a beautiful hike lush evergreens, new leaves popping out, the trilliums were in bloom and eye could see ocean as we began to make our way down the Cliff.
It took us 70 minutes to make our way down a very steep and muddy trail. At the beach we pulled out our lunch and enjoyed some quiet time in our own private beach. But it was soon time to begin the arduous hike back up the Cliff. And it was amazing, I did very well, my lungs didn't hurt, I was not wheezy and we did the climb up in 90 minutes.
I was so excited at how well the hike went, blessed by all of the healing taking place. I was not expecting it but I am so very grateful. I cannot wait for my doctors to see how well I am doing. Because they have all played such an important part in my recovery. And of course all the prayers which are being lifted up for me. I can hardly wait to see what happens next!
It feels good to breathe ...
Just Connie
So,we packed up and headed to Cape Kiwanda which is near Tillamook and Sand Lake. The rain stopped just as we got there. So we put our packs on, got Hope Puppy geared up and headed down the trail. It was a beautiful hike lush evergreens, new leaves popping out, the trilliums were in bloom and eye could see ocean as we began to make our way down the Cliff.
It took us 70 minutes to make our way down a very steep and muddy trail. At the beach we pulled out our lunch and enjoyed some quiet time in our own private beach. But it was soon time to begin the arduous hike back up the Cliff. And it was amazing, I did very well, my lungs didn't hurt, I was not wheezy and we did the climb up in 90 minutes.
I was so excited at how well the hike went, blessed by all of the healing taking place. I was not expecting it but I am so very grateful. I cannot wait for my doctors to see how well I am doing. Because they have all played such an important part in my recovery. And of course all the prayers which are being lifted up for me. I can hardly wait to see what happens next!
It feels good to breathe ...
Just Connie
Thursday, March 23, 2017
Church Board
Tonight was Church Board Meeting. We have three new people on the board. So I spent the first part of the board meeting training them on what a board does and what the pastor does. I am planning on doing some training at the beginning of every board meeting. I think that will be good for all of us.
It was a good meeting, we waded through a lot of stuff tonight with lots of laughter and a lot of work got done. I ended the meeting grateful for the people who are serving on the board, grateful for willing hearts and oh so grateful for this church.
I have a happy heart tonight and that feels good ....
Just Connie
It was a good meeting, we waded through a lot of stuff tonight with lots of laughter and a lot of work got done. I ended the meeting grateful for the people who are serving on the board, grateful for willing hearts and oh so grateful for this church.
I have a happy heart tonight and that feels good ....
Just Connie
Wednesday, March 22, 2017
Credentials interview
Today I headed for Portland for my annual credentials interview. This is an opportunity for the Conference leadership to touch basis with where I am emotionally, physically and spiritually.nit als gives them a chance to hear from me about what I think is working at the church and where there have been struggles.
It was a good interview, they asked hard questions ... But important questions. Such as, "How has your illness effected the church". And the reality is that it has effected it in both negative and positive ways. On the positive side, people have stepped up and taken responsibility in areas they have not done. There are new ministries growing out of that new forward motion. People are spreading their wings and learning to fly and that has been a joy to watch. On the negative side, I sense an uneasiness about what the future will hold. That is totally understandable because ..... We do not know what the future will hold. All we can do is be faithful to the call and the ministry before us.
I thought it was a good interview and I felt their love and support. So glad for our leadership and their commitment to myself, the church and the pastors across the conference.
From there I rushed back to Willamina for yet another treatment. It was the only time I could do the second treatment this week without compromising Sunday. But that means the side effects will really linger on through tomorrow. But it is a case of, I need to suck it up and get it done anyway. And I think that is doable.
So right now, I am curled up in bed and will try sleeping off my pre, mid and pist drugs and recover from the treatment. My migraine had tapered off but I feel it beginning to build . So dark and quiet for me for a while.
Looking forward to tomorrow and 4 days off treatment! Whoo hoo!
There are good things ahead ...
Just Connie
It was a good interview, they asked hard questions ... But important questions. Such as, "How has your illness effected the church". And the reality is that it has effected it in both negative and positive ways. On the positive side, people have stepped up and taken responsibility in areas they have not done. There are new ministries growing out of that new forward motion. People are spreading their wings and learning to fly and that has been a joy to watch. On the negative side, I sense an uneasiness about what the future will hold. That is totally understandable because ..... We do not know what the future will hold. All we can do is be faithful to the call and the ministry before us.
I thought it was a good interview and I felt their love and support. So glad for our leadership and their commitment to myself, the church and the pastors across the conference.
From there I rushed back to Willamina for yet another treatment. It was the only time I could do the second treatment this week without compromising Sunday. But that means the side effects will really linger on through tomorrow. But it is a case of, I need to suck it up and get it done anyway. And I think that is doable.
So right now, I am curled up in bed and will try sleeping off my pre, mid and pist drugs and recover from the treatment. My migraine had tapered off but I feel it beginning to build . So dark and quiet for me for a while.
Looking forward to tomorrow and 4 days off treatment! Whoo hoo!
There are good things ahead ...
Just Connie
Monday, March 20, 2017
Hiking Yaquina Head
I got up early and began to gather my hiking things. The plan was to head to the beach for Tami's Birthday and do some short hikes around the Yaquina Head Lighthouse. I looked out the window and noticed the buckets of rain coming down and added extra dry clothes to my bag.
It was not long before Tami was there and we were on our way to the beach. And it rained and rained right up until we got to Lincoln City and the rain began to let up. By the time we hit Newport, we were actually seeing blue sky.
We began at the interpretive center and learned some interesting facts about the lighthouse. From there we headed to the upper parking lot where we started with some wonderful photo s of the the lighthouse against a beautiful blue sky. We first took the short hike around the lighthouse and looked at the nesting rocks, where colonies of seabirds nest every year. Then we tool the short path down to the tidal pools, where we saw lots of tidal creatures big and small. There were harbor seals and ducks and just so much to look at.
From there we sat in the car for a whike do I coul catch my breath. Then we headed up the headland for the last hike of the day. It was a fairly gradual grade, but such a beautiful view from the top. I am really glad we made the effort to do it.
It was a great day, that I really needed. So glad that I could get outside for a while.
It was a day that blew life into me in so many ways. I need more of these!
Just Connie
It was not long before Tami was there and we were on our way to the beach. And it rained and rained right up until we got to Lincoln City and the rain began to let up. By the time we hit Newport, we were actually seeing blue sky.
We began at the interpretive center and learned some interesting facts about the lighthouse. From there we headed to the upper parking lot where we started with some wonderful photo s of the the lighthouse against a beautiful blue sky. We first took the short hike around the lighthouse and looked at the nesting rocks, where colonies of seabirds nest every year. Then we tool the short path down to the tidal pools, where we saw lots of tidal creatures big and small. There were harbor seals and ducks and just so much to look at.
From there we sat in the car for a whike do I coul catch my breath. Then we headed up the headland for the last hike of the day. It was a fairly gradual grade, but such a beautiful view from the top. I am really glad we made the effort to do it.
It was a great day, that I really needed. So glad that I could get outside for a while.
It was a day that blew life into me in so many ways. I need more of these!
Just Connie
Friday, March 17, 2017
A Good Day
I got some great news from the voice therapist. She was very pleased with how I was doing and is allowing me to do some singing exercises 5 minutes in the morning and 5 minutes at night. She also expects me to completely recover my singing voice! That was incredibly happy news for me. I have really missed singing.
I also got a call from my immunologist who found some blood work from January which would qualify me for the new asthma medication they have been wanting to put me on. The massive steroids I have been on, skews my blood work horribly. So I signed the papers to start things through with the insurance. I am always blessed when I see the immunologist. He is just a very nice man that always makes me smile. I am very blessed to have him on my health care team.
I was also blessed to have a friend that ferried me around all day. She drove me to Portland, then to Salem and I just so enjoyed spending the day together. Since it was the day after treatment I was especially thankful to have a driver. I found as the day went on, I felt better and better.
It was just a day full of good news and good things and I can use a few of those ....
Just Connie
I also got a call from my immunologist who found some blood work from January which would qualify me for the new asthma medication they have been wanting to put me on. The massive steroids I have been on, skews my blood work horribly. So I signed the papers to start things through with the insurance. I am always blessed when I see the immunologist. He is just a very nice man that always makes me smile. I am very blessed to have him on my health care team.
I was also blessed to have a friend that ferried me around all day. She drove me to Portland, then to Salem and I just so enjoyed spending the day together. Since it was the day after treatment I was especially thankful to have a driver. I found as the day went on, I felt better and better.
It was just a day full of good news and good things and I can use a few of those ....
Just Connie
Tuesday, March 14, 2017
Treatment Again
This is treatment day, It usually begins with an early morning yoga class. Then two hours before treatment I start the first of my pre treatment drugs. One hour before, I take the second set of pre treatment drugs. Then before the drugs begin to make me drowsy and fuzzy, I lay out all the needles, drugs, tubing ... everything I will need for treatment. Then I load the needles with the medication and place it in the pump.
Some days I have someone come and help me set the needles. Other days, I place them by myself. By the time treatment begins all of the pre medications are hitting and I am very drowsy. So once the pump has started, I head to bed and sleep.
Three hours into treatment I take the next set of medications to help stave off side effects. Then it is back to bed and a couple of hours later, I usually wake up when the pump clicks off and then it is time to remove the needles and put it away for the next treatment. Then there is one more round of medication and then back to bed to sleep it off.
Then for the next couple of days I fight the lingering migraine, fatigue and nauseous. And about the time it is gone, it is time for another treatment.
But as hard as treatment is, I know that this is bringing me life and healing. And it is worth it. I am hoping that this phase of treatment will be finished within a month and I can step down from two treatments a week to 1 treatment a week. It would make an incredible difference to not only my schedule but how man "sick" days a week I am having.
Around April 1st I am supposed to be having another blood test and that will tell me what the next month of treatment will bring. And that is rather exciting to contemplate.
And exciting is good ...
Just Connie
Monday, March 13, 2017
Thankful
Back in the pulpit today! And it felt so good and I am feeling so much better! After spending a couple of days resting, trying to overcome lingering side effects, I woke up with more energy, wheezing a bit less and feeling so much better.
It was rather a relaxed day at church with 20 of our men at Men's Retreat, but it sure made the sanctuary look empty! But it was a good day of worship and I preached about living life in the hard times. I actually shared a bit about the melt down I had a week and a half ago or so. People really seemed to resonate with what I shared. Sometimes it is very hard to share some of those personal things but yet I think it is really important ... Well and when God nudges you when you are preaching it is always right to follow.
It felt so good and so right, to be back preaching. I am so thankful for the call, so thankful for this amazing church ... and just ... Thankful ..
Just Connie
It was rather a relaxed day at church with 20 of our men at Men's Retreat, but it sure made the sanctuary look empty! But it was a good day of worship and I preached about living life in the hard times. I actually shared a bit about the melt down I had a week and a half ago or so. People really seemed to resonate with what I shared. Sometimes it is very hard to share some of those personal things but yet I think it is really important ... Well and when God nudges you when you are preaching it is always right to follow.
It felt so good and so right, to be back preaching. I am so thankful for the call, so thankful for this amazing church ... and just ... Thankful ..
Just Connie
Tuesday, March 7, 2017
Treatment Day
A late treatment day ... Here it is 6pm at night and I still have another round of meds to go. I am fuzzy, nauseous, very tired and struggling with my intestinal system. All very common reactions to treatment and why I am taking so many pre, mid and post meds along with the gamma globulin.
But I am not throwing up and my intestinal system seems to be calming down. So those are all positive and I am looking forward to a good nights sleep and yoga in the morning.
I find myself getting very tired, very quickly and I really need the disciple of daily exercise. It just seems so hard to get right now. But I am working on it.
Treatment day always seems a bit surreal to me. It is very odd to be pumping my body full of these drugs. But yet the joy of hearing that my antibodies are beginning to climb makes the misery worth it. I am willing to work hard to reclaim my life and health.
I am working hard to not get side tracked or discouraged and trying to find times for treatment that are not so invasive into my work week. The problem is when I do them in the afternoon, then I struggle with a bit more treatment side effects the next day. Such as fatigue, headache and nausea. But it is still giving me the chance to do the work I am called to do. And that brings joy and life to me.
So in just a little while I will take my last round of treatment post meds and then I will get ready for bed and try to sleep off the side effects. At least that is what I am hoping for.
Tomorrow, yoga class, Chamber Meeting and then meeting with a couple who want to do vow renewals. A pretty normal ministry day and that sounds pretty good to me.
Just Connie
But I am not throwing up and my intestinal system seems to be calming down. So those are all positive and I am looking forward to a good nights sleep and yoga in the morning.
I find myself getting very tired, very quickly and I really need the disciple of daily exercise. It just seems so hard to get right now. But I am working on it.
Treatment day always seems a bit surreal to me. It is very odd to be pumping my body full of these drugs. But yet the joy of hearing that my antibodies are beginning to climb makes the misery worth it. I am willing to work hard to reclaim my life and health.
I am working hard to not get side tracked or discouraged and trying to find times for treatment that are not so invasive into my work week. The problem is when I do them in the afternoon, then I struggle with a bit more treatment side effects the next day. Such as fatigue, headache and nausea. But it is still giving me the chance to do the work I am called to do. And that brings joy and life to me.
So in just a little while I will take my last round of treatment post meds and then I will get ready for bed and try to sleep off the side effects. At least that is what I am hoping for.
Tomorrow, yoga class, Chamber Meeting and then meeting with a couple who want to do vow renewals. A pretty normal ministry day and that sounds pretty good to me.
Just Connie
Monday, March 6, 2017
Wonderful and Challenging
Back in the saddle again ..... However this cowboy did not ride very long. I got my sermon done (thank you Lord!) I was very glad for what had been percolating on my heart the last few weeks. I made a Bank run, a run to the Dr's office to get a shot for my post treatment headache, then a Pharmacy run. At the Pharmacy I was blessed to run into my friend Bob who used to own the pharmacy because they were out of my insulin syringes nd he was able to get them to find me some until more come in tomorrow. I would have run out today and that would not have been good.
By the time I left there I was exhausted nd shaking. I headed home where I run into. Friend from church who was clening my floors for me. I blessed her, wrapped myself in. Blanket no fell into bed. When I woke up she was gone nd my floors were clean! What a wonderful blessing.
I am beginning to realize that I am not going to bounce back quickly from this. It is going to be painfully slow no frustrating. But I am not going to give up.ni am going to keep going, keep stretching myself a little bit and keep moving as my pulmunologist has told me too.
I am also finding that people are distressed because they either assume I am not resting or I am doing things I should not be doing. I am the best monitored patient outside of an ICU unit. And I am very compliant with my medical orders. I also have found that everyone knows what I need to do to get better. I need to take a special vitamin or supplement, I need to pray more or divest myself of some spiritual illness they think I have.... Well the list goes on and on. I know they have my best interests at heart, but it gets very frustrating and I know it frustrates them when I do not do what they want me to do.
So I smile, I explain why I can't do what they want me to or tell them I will pray about it. And I keep doing what God is telling me to do, while following the Dr's instructions to the best of my ability and trying, trying to keep a good attitude and get some actual work accomplished.
These are wonderful and challenging days ...
Just Connie
By the time I left there I was exhausted nd shaking. I headed home where I run into. Friend from church who was clening my floors for me. I blessed her, wrapped myself in. Blanket no fell into bed. When I woke up she was gone nd my floors were clean! What a wonderful blessing.
I am beginning to realize that I am not going to bounce back quickly from this. It is going to be painfully slow no frustrating. But I am not going to give up.ni am going to keep going, keep stretching myself a little bit and keep moving as my pulmunologist has told me too.
I am also finding that people are distressed because they either assume I am not resting or I am doing things I should not be doing. I am the best monitored patient outside of an ICU unit. And I am very compliant with my medical orders. I also have found that everyone knows what I need to do to get better. I need to take a special vitamin or supplement, I need to pray more or divest myself of some spiritual illness they think I have.... Well the list goes on and on. I know they have my best interests at heart, but it gets very frustrating and I know it frustrates them when I do not do what they want me to do.
So I smile, I explain why I can't do what they want me to or tell them I will pray about it. And I keep doing what God is telling me to do, while following the Dr's instructions to the best of my ability and trying, trying to keep a good attitude and get some actual work accomplished.
These are wonderful and challenging days ...
Just Connie
Sunday, March 5, 2017
A New Day, A New Perspective
What an emotional rollercoaster I feel like I have been on. That is a very difference experience for me as I am usually on a pretty even keel. It reminded me that I need to be taking care of myself physically, emotionally and spiritually. They are are interwoven and I need to look at my life holistically.
Though I hate to admit it the overnight oxygen is actually helping. I rested better last night and woke with more energy than I have had in weeks. That is strengthening the continual steps of healing. Tomorrow morning I will get up at 5am and return to my yoga class. That will not only be a positive for my physical health but for my emotional health as well.
Spiritually, I will be back to a more normal schedule at the church. Tomorrow is sermon and study day and I am really looking forward to digging into where God is calling me in the weeks ahead. I will also have more time to spend in quiet reflection and more time in ministry which will energize my spiritual life. There is nothing like walking with certainity on the path God is calling you to walk to recharge your spirirual batteries. Obedience is so important.
Emotionally I will continue to try to be honest with friends and family though I often find it hard to do, especially when my heart is broken. But I am working on being a better and more honest friend. I am so very grateful for the people that God is putting in my life that love me and care how I am dealing with the happenings of my life.
I am grateful for Dr's who are honest with me and are working hard to bring my life back and health back to me. I am blessed and I believe that God has good things ahead for me. That strengthens me, fills me with courage and optimism and prepares me to keep traveling the road stretching before me.
I am ready to forge ahead, to not get lost in fear, exhaustion and words that strip my confidence and hope. Tomorrow is a new day and will be filled. With new things, with joy and challenge.
I can hardly wait ...
Just Connie
Though I hate to admit it the overnight oxygen is actually helping. I rested better last night and woke with more energy than I have had in weeks. That is strengthening the continual steps of healing. Tomorrow morning I will get up at 5am and return to my yoga class. That will not only be a positive for my physical health but for my emotional health as well.
Spiritually, I will be back to a more normal schedule at the church. Tomorrow is sermon and study day and I am really looking forward to digging into where God is calling me in the weeks ahead. I will also have more time to spend in quiet reflection and more time in ministry which will energize my spiritual life. There is nothing like walking with certainity on the path God is calling you to walk to recharge your spirirual batteries. Obedience is so important.
Emotionally I will continue to try to be honest with friends and family though I often find it hard to do, especially when my heart is broken. But I am working on being a better and more honest friend. I am so very grateful for the people that God is putting in my life that love me and care how I am dealing with the happenings of my life.
I am grateful for Dr's who are honest with me and are working hard to bring my life back and health back to me. I am blessed and I believe that God has good things ahead for me. That strengthens me, fills me with courage and optimism and prepares me to keep traveling the road stretching before me.
I am ready to forge ahead, to not get lost in fear, exhaustion and words that strip my confidence and hope. Tomorrow is a new day and will be filled. With new things, with joy and challenge.
I can hardly wait ...
Just Connie
Friday, March 3, 2017
Perspective
I felt my eyes fill with tears as I listened to the Dr. He had not seen me in a year and I know was distressed at how much ground I had lost in that time. But as I heard him tell me to file for disability, it became apparent that he did not think I was going to get better. I felt like I had been punched in the stomach. I fought the tears as I tried to make my way from the office in dignity.
All the way home I fought to put things in perspective. The fact that I have made progress, the morning call from immunologist to tell me my antibody levels are rising. But yet this Dr's perspective surrounded me with something that I have not felt since I entered this journey ... A lack of hope which is very foreign to my nature and my practice.
So I e-mailed a trusted friend who is also my primary care Dr. I told him what had been said and asked for his perspective and input. He honestly pointed out that I have a lot of ground to recover, but that all of them ... My pulmunologist, my immunologist and himself were working towards recovery not palliative care. I am so appreciative of his honesty and perspective. I really needed to hear that.
I also needed to hear him say ... Uhmmm don't go back to that Dr! I am definitely complying with that!
Just Connie
All the way home I fought to put things in perspective. The fact that I have made progress, the morning call from immunologist to tell me my antibody levels are rising. But yet this Dr's perspective surrounded me with something that I have not felt since I entered this journey ... A lack of hope which is very foreign to my nature and my practice.
So I e-mailed a trusted friend who is also my primary care Dr. I told him what had been said and asked for his perspective and input. He honestly pointed out that I have a lot of ground to recover, but that all of them ... My pulmunologist, my immunologist and himself were working towards recovery not palliative care. I am so appreciative of his honesty and perspective. I really needed to hear that.
I also needed to hear him say ... Uhmmm don't go back to that Dr! I am definitely complying with that!
Just Connie
Thursday, March 2, 2017
Tired ...
I am tired ... The kind of tired that saps you of your strength and drive. I do not often get like this, but this has been a partcularly hard journey the last few months. I have been fighting pneumonia, medication and testing, trying to fit in way too many Dr's appointments.nall of it to be sucking the energy and vitality from me.
It dawned on me today when my mother asked me if I was having a bad day. I Immediately teared up and whispered, I am having a lot of bad days. That is not like me at all and it truly srurprised mea. But I think it is an honest response to where I am right now. This is a hard journey and it is taking a to emotionally and physically.
My last two X-rays show pneumonia in both lungs with some scarring. My over night Oximeters test shows that I need night time oxygen which was supposed to be delivered today but it didn't show up today, so hopefully tomorrow.
I also get to see pulmunologist number one and it will be good to gets is input on everything. I would like less time caught up with Dr's and treatments however this seems to be my reality at this point. Right now I am trying hard to embrace where I am at and learn the lessons this journey will teach me.
I need to keep my eyes focused on Christ, stay positive, honor my fellow travelers, expect God's best. I also need to keep focused in the positive. I want my life to be bigger than my illness.
I think it will take some hard work and determination....
Just Connie
It dawned on me today when my mother asked me if I was having a bad day. I Immediately teared up and whispered, I am having a lot of bad days. That is not like me at all and it truly srurprised mea. But I think it is an honest response to where I am right now. This is a hard journey and it is taking a to emotionally and physically.
My last two X-rays show pneumonia in both lungs with some scarring. My over night Oximeters test shows that I need night time oxygen which was supposed to be delivered today but it didn't show up today, so hopefully tomorrow.
I also get to see pulmunologist number one and it will be good to gets is input on everything. I would like less time caught up with Dr's and treatments however this seems to be my reality at this point. Right now I am trying hard to embrace where I am at and learn the lessons this journey will teach me.
I need to keep my eyes focused on Christ, stay positive, honor my fellow travelers, expect God's best. I also need to keep focused in the positive. I want my life to be bigger than my illness.
I think it will take some hard work and determination....
Just Connie
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