I received a flurry of phone calls today from my immunologist and the pharmaceutical company. The outcome is that my gamma globulin meds will arrive tomorow and I will most probably begin treatment next week.
I find that I am both looking forward to getting started and yet rather dreading the reality. The doctors have been very honest with me. This is life and death treatment for me. I am not getting better ... I am getting worse at a faster rate than they had hoped. My lungs are down, my immune system continues to worsen, I am on massive steroids, three different antibiotics and just trying to stay upright and breathing until treatment begins.
I know that there will probably be side effects, I know that I will chafe under the limitations that treatment will put on me, and I know that this is my best chance at life and health. So I am choosing to embrace this chance I am being given and walk with joy and confidence as I continue this journey. I believe there are things for me to learn and that there will be wonderful things ahead.
It is just another step forward ....
Just Connie
Tuesday, November 29, 2016
How Am I Doing?
People often express concern about how I am handling what is going on with my body. I have to say with honesty that it depends.
It depends on physically what is going on. Because I have found that how my body feels and what my emotions are are very intertwined. When my lung function is low and I am struggling with infections it is easy to feel down or believe that I am not going to get better. And conversely, when my lung function is a bit higher and I am feeling stronger it is do much easier to believe that I am being healed.
It depends on how many things are hanging over my head. I have found it very hard to keep up with house work. It seems by the time I stagger home, I have no energy to do the most basic of tasks. Walking into a house that us not cleaned and organized to my standards has increased my stress and feeling overwhelmed. I gave had this feeling that I should be able to do keep up with everything. I was blessed to have a couple of dear friends who came in while I was gone and cleaned my house. They made an incredible dent in the mess and that gift of service has done a lot to strengthen and encourage me.
It depends on whether there is forward motion on medical treatment or it it seems I am in a downward spiral with little hope being offered. Right now the doctors are working hard to get me back into treatment and are hopeful that this will make the difference between life and death for me.
It depends on my support system. Do I feel loved and supported? I have to admit here in Willamina it is hard to not feel loved and supported. People have been amazing. Someone anonymously had a ton of stove pellets delivered to me. People continue to donate to my medical fund and I have a local businessman each month that donates to help with personal travel expenses and so on.
So I realize that my emotions are dependent on a lot of things. I also realize that sometimes emotions lie and do not reflect the truth of a situation. What I do know about my situation is that currently I am critically ill. If we cannot stop this downward cycle I will die. I also know that I have an incredible team of doctors working very hard to bring healing and health to me. And I find that I am at peace. I am doing everything that can be done and the rest is in God's hands.
I believe that God is big enough, loving enough and wise enough to do what needs to be done for me. I believe that that there are good things ahead for me.
It will be good .... Or it will be even better .....
Just Connie
It depends on physically what is going on. Because I have found that how my body feels and what my emotions are are very intertwined. When my lung function is low and I am struggling with infections it is easy to feel down or believe that I am not going to get better. And conversely, when my lung function is a bit higher and I am feeling stronger it is do much easier to believe that I am being healed.
It depends on how many things are hanging over my head. I have found it very hard to keep up with house work. It seems by the time I stagger home, I have no energy to do the most basic of tasks. Walking into a house that us not cleaned and organized to my standards has increased my stress and feeling overwhelmed. I gave had this feeling that I should be able to do keep up with everything. I was blessed to have a couple of dear friends who came in while I was gone and cleaned my house. They made an incredible dent in the mess and that gift of service has done a lot to strengthen and encourage me.
It depends on whether there is forward motion on medical treatment or it it seems I am in a downward spiral with little hope being offered. Right now the doctors are working hard to get me back into treatment and are hopeful that this will make the difference between life and death for me.
It depends on my support system. Do I feel loved and supported? I have to admit here in Willamina it is hard to not feel loved and supported. People have been amazing. Someone anonymously had a ton of stove pellets delivered to me. People continue to donate to my medical fund and I have a local businessman each month that donates to help with personal travel expenses and so on.
So I realize that my emotions are dependent on a lot of things. I also realize that sometimes emotions lie and do not reflect the truth of a situation. What I do know about my situation is that currently I am critically ill. If we cannot stop this downward cycle I will die. I also know that I have an incredible team of doctors working very hard to bring healing and health to me. And I find that I am at peace. I am doing everything that can be done and the rest is in God's hands.
I believe that God is big enough, loving enough and wise enough to do what needs to be done for me. I believe that that there are good things ahead for me.
It will be good .... Or it will be even better .....
Just Connie
Sunday, November 27, 2016
Sunday
Sundays are busy and wonderful. I am feeling better after several days on antibiotics. Today was one of those very special Sundays. Everything seemed to fall into place and there was such joy and happiness as we celebrated together.
I love Sundays like this where everything seems to fall into place and the building is vibrating with the love of God. From the music and prayer time to the sermon. It was wonderful.
After service I went out to eat with a friend and we ran into other friends and we all ate together and had such a good time together. What an unexpected blessing.
After lunch I had one of those important conversations with a close friend to share what the doctors are saying right now. I was so overwhelmed with his love and support. I am so blessed by the friendships I have here in Willamina. I love this town and I love these people. They add so much love to my life.
I have been resting this afternoon and in a few hours I will head to yoga class to wrap my day up. All in all, a wonderful day.
It is good to have some of these kinds of days .....
JUst Connie
I love Sundays like this where everything seems to fall into place and the building is vibrating with the love of God. From the music and prayer time to the sermon. It was wonderful.
After service I went out to eat with a friend and we ran into other friends and we all ate together and had such a good time together. What an unexpected blessing.
After lunch I had one of those important conversations with a close friend to share what the doctors are saying right now. I was so overwhelmed with his love and support. I am so blessed by the friendships I have here in Willamina. I love this town and I love these people. They add so much love to my life.
I have been resting this afternoon and in a few hours I will head to yoga class to wrap my day up. All in all, a wonderful day.
It is good to have some of these kinds of days .....
JUst Connie
Friday, November 25, 2016
Feeling Blessed
I spent the last two days with family. Even better, I spent the last two days with my children and grandchildren. For the first time ever I was with with all three grandchildren at the same time. It was wonderful, amazing and just an incredible blessing.
I have three grandsons, ages 6, 3 and 1. It was wonderful to play with them and get to know them. They are such wonderful little guys and they really blessed my heart in so many ways as we played together. It makes me want to spend much more time with them. This time was way too short.
I also got to spend time with my daughter. What a wonderful woman she has grown into. She is strong and has opinions and thoughts and it was incredible to stay up late with her and just talk and talk. How I enjoyed that very rare and special time with her.
The outcome of theses two days is that it was not long enough. I want more time with them. It makes me even more determined to get healthy so I can go and visit. But I am also feeling very blessed to have this time with my son, daughter and grandchildren. I am truly blessed.
And that is a pretty good thing to be feeling the day after Thanksgiving.....
Just Connie
I have three grandsons, ages 6, 3 and 1. It was wonderful to play with them and get to know them. They are such wonderful little guys and they really blessed my heart in so many ways as we played together. It makes me want to spend much more time with them. This time was way too short.
I also got to spend time with my daughter. What a wonderful woman she has grown into. She is strong and has opinions and thoughts and it was incredible to stay up late with her and just talk and talk. How I enjoyed that very rare and special time with her.
The outcome of theses two days is that it was not long enough. I want more time with them. It makes me even more determined to get healthy so I can go and visit. But I am also feeling very blessed to have this time with my son, daughter and grandchildren. I am truly blessed.
And that is a pretty good thing to be feeling the day after Thanksgiving.....
Just Connie
Wednesday, November 23, 2016
A Full Day
I saw the pulmunologist this morning. The news from him is that I have an active infection, Thrush and my lungs are worse. I am now on three different antibiotics, a drug for bone loss because of the massive steroids and the order to keep moving. He did say I am worsening which I already realized. He also wants me in gamma globulin treatment yesterday.
Tonight the immunologist called and my latest labs are back. The good news is that I do not have the antibody that fights against the gamma globulin treatment. The bad news is that my immune levels are worse and levels that have not been low are low. The immunologist will be calling the pharmaceutical company on Monday and trying to get treatment begun next week. I am not sure that is possible. But I hope it is soon.
I am very ready to feel better and begin to reclaim my life. I am very thankful for the doctors that are working so hard to bring me health and healing. I am truly blessed. I also remain convinced that there are wonderful things for me to learn as I journey through this.
There are good things ahead ...
Just Connie
Tonight the immunologist called and my latest labs are back. The good news is that I do not have the antibody that fights against the gamma globulin treatment. The bad news is that my immune levels are worse and levels that have not been low are low. The immunologist will be calling the pharmaceutical company on Monday and trying to get treatment begun next week. I am not sure that is possible. But I hope it is soon.
I am very ready to feel better and begin to reclaim my life. I am very thankful for the doctors that are working so hard to bring me health and healing. I am truly blessed. I also remain convinced that there are wonderful things for me to learn as I journey through this.
There are good things ahead ...
Just Connie
Tuesday, November 22, 2016
Tough Day
Today was tough! I woke at 6am and hit the ground running. I put 6 pounds of sweet potatoes in the crockpot to cook, got ready for the day, did all my blood sugar and lung testing and headed to the church by 8am to get ready for my morning meetings.
At 9am the committee that is planning the Candlelight service met with me to go over what the plan is for this year. I am very excited at what they are planning and I think this will be a fabulous service. At 10am I met with the ministry staff. We laughed, we planned, I shared what was going on medically with me. I firmed up December's preaching schedule, it is always hard for me to give up preaching time! And we went over the calendar. Of course all through both meetings I was in and out of the bathroom struggling withe the nausea and GI issues that have plagued me for months. It makes it very hard to get much done.
By 11:30 we were wrapping things up and I headed to the Fire Hall to sign some checks. while I was there I texted my primary care dr to alert him as to what was going on and I was directed to come to his office and pick up a new medication for IBS, since my gasteroenterologist thinks I am having a systemic reaction to the trauma my body is facing.
From there I headed into McMinnville hoping to actually find a pair of pants that would fit me since I have dropped yet more weight. I headed to Ross Dress for less and actually scored big. Two pairs of pants that fit (sigh, size 2) I cannot lose any more weight, a shirt, a sweater and miracles if miracles, 2 pairs of boots that actually fit! I spent much more than I had planned, but any time I find shoes that fit me, I have to buy them.
While I was shopping, I called the immunologist's office to alert them I had not heard from the pharmaceutical company about treatment. In a few minutes I got a call from the the Dr himself letting me know that he did not have my blood tests results back yet. He told me he would find out what was happening and then call me back. It wasn't that long when he called to tell he that the lab had been late in sending it out to Montana. It would be up to 7 days before he got results. The problem is that if the blood tests show that I have IGA antibodies it would change the course of treatment. I told him I was not going to die in the next 7 days and we could afford to wait until we knew. And that is when he told me the plan was to have me try this brand new sub cue treatment. But only 2 grams a day for 4 days in a row. And that is when my eyes filled with tears as I thought about the reality of four days of treatment. But I managed to not blubber to the Dr and say good bye.
From there I grabbed a fast food lunch, which turned out to be a bad idea because my stomach did not like it and then headed to Walmart to pick up a few things. It was 3pm by the time I got out and I threw things in the car and headed back to Sheridan to pick up the new meds and then to stop at the Fire Hall to update them on the latest news from the immunologist.
I am so blessed to have friends I can cry with, and laugh with and be loved. For the next hour I leaned on them as they breathed life and comfort into me. The Fire Chief came and joined us and we laughed and shared wild stories. And that is when the chimney fire toned out. Chief and I sat there looked at each other and decided to listen to it on the radio. If it got bigger than the chimney we would head over. So for the next 45 minutes we listened with pride as the crew did an incredible job without us.
When I knew it was all covered I took my sick tummy and my aching head home. To wrap presents, unpack the car, make the sweet potato dish for Thanksgiving. Give the key to the incredible woman who is going to help me dig my house out while I am gone. Clean the kitchen, run the dishwasher and now I am sprawled on my bed trying to convince my stomach to not throw up so. I can go take my meds and hang up all the washing.
Soon I will actually go to bed, and head to yoga at 5:30 am in the morning and then hit the ground
running. It will be a good day, a long day but a good day and I am really looking forward to seeing my family.
Now if my stomach will just cooperate .....
Just Connie
At 9am the committee that is planning the Candlelight service met with me to go over what the plan is for this year. I am very excited at what they are planning and I think this will be a fabulous service. At 10am I met with the ministry staff. We laughed, we planned, I shared what was going on medically with me. I firmed up December's preaching schedule, it is always hard for me to give up preaching time! And we went over the calendar. Of course all through both meetings I was in and out of the bathroom struggling withe the nausea and GI issues that have plagued me for months. It makes it very hard to get much done.
By 11:30 we were wrapping things up and I headed to the Fire Hall to sign some checks. while I was there I texted my primary care dr to alert him as to what was going on and I was directed to come to his office and pick up a new medication for IBS, since my gasteroenterologist thinks I am having a systemic reaction to the trauma my body is facing.
From there I headed into McMinnville hoping to actually find a pair of pants that would fit me since I have dropped yet more weight. I headed to Ross Dress for less and actually scored big. Two pairs of pants that fit (sigh, size 2) I cannot lose any more weight, a shirt, a sweater and miracles if miracles, 2 pairs of boots that actually fit! I spent much more than I had planned, but any time I find shoes that fit me, I have to buy them.
While I was shopping, I called the immunologist's office to alert them I had not heard from the pharmaceutical company about treatment. In a few minutes I got a call from the the Dr himself letting me know that he did not have my blood tests results back yet. He told me he would find out what was happening and then call me back. It wasn't that long when he called to tell he that the lab had been late in sending it out to Montana. It would be up to 7 days before he got results. The problem is that if the blood tests show that I have IGA antibodies it would change the course of treatment. I told him I was not going to die in the next 7 days and we could afford to wait until we knew. And that is when he told me the plan was to have me try this brand new sub cue treatment. But only 2 grams a day for 4 days in a row. And that is when my eyes filled with tears as I thought about the reality of four days of treatment. But I managed to not blubber to the Dr and say good bye.
From there I grabbed a fast food lunch, which turned out to be a bad idea because my stomach did not like it and then headed to Walmart to pick up a few things. It was 3pm by the time I got out and I threw things in the car and headed back to Sheridan to pick up the new meds and then to stop at the Fire Hall to update them on the latest news from the immunologist.
I am so blessed to have friends I can cry with, and laugh with and be loved. For the next hour I leaned on them as they breathed life and comfort into me. The Fire Chief came and joined us and we laughed and shared wild stories. And that is when the chimney fire toned out. Chief and I sat there looked at each other and decided to listen to it on the radio. If it got bigger than the chimney we would head over. So for the next 45 minutes we listened with pride as the crew did an incredible job without us.
When I knew it was all covered I took my sick tummy and my aching head home. To wrap presents, unpack the car, make the sweet potato dish for Thanksgiving. Give the key to the incredible woman who is going to help me dig my house out while I am gone. Clean the kitchen, run the dishwasher and now I am sprawled on my bed trying to convince my stomach to not throw up so. I can go take my meds and hang up all the washing.
Soon I will actually go to bed, and head to yoga at 5:30 am in the morning and then hit the ground
running. It will be a good day, a long day but a good day and I am really looking forward to seeing my family.
Now if my stomach will just cooperate .....
Just Connie
Monday, November 21, 2016
Juggling Act
The last two days I have woke up nauseous.... Really nauseous. The kind where you are struggling all the time to not run for the bathroom. It was bad enough at church yesterday that I sent a couple of the teens to go buy me a diet 7-up at the market. Today was no better and after yoga class I took my meds and laid my aching head back in bed. I slept over 3 hours, so my body must have needed it.
I headed to the office to work on my sermon and got a call from my gasteroenterologist to tell me my ultra sound looked fine. That was good news. The bad news is means that the pain, cramping and nausea is probably a systemic reaction to the trauma my body is experiencing. That does not fill me with joy and there is not a lot I can do at that point. Just treat the symptoms and take another step forward.
Wednesday I see the pulmunologist, I do not think he will be happy. I have not started treatment yet and I think that will frustrate him. I have not even heard from the pharmaceutical company yet. And now so close to thanksgiving I probably won't till next week. It is pretty frustrating.
But I will keep taking one more step forward, trying to keep all the health balls in the air as I juggle them. The high blood sugar, my lungs, the steroids, my immune system, my systemic reactions, my stomach, my vocal chords and whatever else will rear it's head in the days to come.
I think I need to becone a better juggler ....
Just Connie
I headed to the office to work on my sermon and got a call from my gasteroenterologist to tell me my ultra sound looked fine. That was good news. The bad news is means that the pain, cramping and nausea is probably a systemic reaction to the trauma my body is experiencing. That does not fill me with joy and there is not a lot I can do at that point. Just treat the symptoms and take another step forward.
Wednesday I see the pulmunologist, I do not think he will be happy. I have not started treatment yet and I think that will frustrate him. I have not even heard from the pharmaceutical company yet. And now so close to thanksgiving I probably won't till next week. It is pretty frustrating.
But I will keep taking one more step forward, trying to keep all the health balls in the air as I juggle them. The high blood sugar, my lungs, the steroids, my immune system, my systemic reactions, my stomach, my vocal chords and whatever else will rear it's head in the days to come.
I think I need to becone a better juggler ....
Just Connie
Saturday, November 19, 2016
Church Dinner
Tonight was the big Thanksgiving Dinner at the church. To make sure I was in good shape for it, I laid low all day. Didn't get done any of the things I had hoped to do, except prepare the sweet potatoes for the dinner.
The dinner seemed to be a wild success in fact we ended up putting more tables up in the foyer to get people seated. I am thinking that next year we probably need to split the two dinners up. The church dinner and the Community Kitchen Dinner. I think there were too many people crammed in too small a space. But I still think everyone had plenty of food and had a good time.
It felt weird to go in and not do any of the set up or tear down. That is against my nature and my habit to just float in for the dinner and go home. But I am working hard to not over tire myself .. It is really hard. I hope it never becomes easy.
So now, I am resting again, letting my blood sugar come back down after way too big a dinner.
Sigh ...
Just Connie
The dinner seemed to be a wild success in fact we ended up putting more tables up in the foyer to get people seated. I am thinking that next year we probably need to split the two dinners up. The church dinner and the Community Kitchen Dinner. I think there were too many people crammed in too small a space. But I still think everyone had plenty of food and had a good time.
It felt weird to go in and not do any of the set up or tear down. That is against my nature and my habit to just float in for the dinner and go home. But I am working hard to not over tire myself .. It is really hard. I hope it never becomes easy.
So now, I am resting again, letting my blood sugar come back down after way too big a dinner.
Sigh ...
Just Connie
Friday, November 18, 2016
Excited Thankfulness
I am so excited! For the first time in about 7 years I will spend Thanksgiving with my family. Not only that but I will spend it with my daughter and her family too! It has been about 15 years since I spent Thanksgiving with her.
I have to admit that it has been a grief to my heart to not be part of extended family celebrations. It is not how I thought my life would be. I always pictured my children and grandchildren streaming home for the holidays with love and laughter filling the air. Instead I find myself alone, ill and often lonely through the holidays. I have worked hard to try to not sit around and mope. For Thanksgiving I usually spend it at the Fire Station with the on duty crew. Christmas I spend volunteering at the free Community Christmas Dinner. Those are rich and wonderful times, but yet so different from what I thought my life would be at this point.
I have to admit that even when I am with my family I often feel out of place. My children are not usually there and I am often reminded that I am in so many ways an outsider. I do not doubt my family's love for me, I think in many ways they do not understand me or the life I live. I have little revelence to their lives.
But this Thanksgiving is different. I will be able to spend time with my daughter, son in law and two marvelous grandchildren. I will get to know them in new ways and hopefully let them know how much I love them and how important they are to me.
Just a week away ... I am feeling thankful ...
Just Connie
I have to admit that it has been a grief to my heart to not be part of extended family celebrations. It is not how I thought my life would be. I always pictured my children and grandchildren streaming home for the holidays with love and laughter filling the air. Instead I find myself alone, ill and often lonely through the holidays. I have worked hard to try to not sit around and mope. For Thanksgiving I usually spend it at the Fire Station with the on duty crew. Christmas I spend volunteering at the free Community Christmas Dinner. Those are rich and wonderful times, but yet so different from what I thought my life would be at this point.
I have to admit that even when I am with my family I often feel out of place. My children are not usually there and I am often reminded that I am in so many ways an outsider. I do not doubt my family's love for me, I think in many ways they do not understand me or the life I live. I have little revelence to their lives.
But this Thanksgiving is different. I will be able to spend time with my daughter, son in law and two marvelous grandchildren. I will get to know them in new ways and hopefully let them know how much I love them and how important they are to me.
Just a week away ... I am feeling thankful ...
Just Connie
Thursday, November 17, 2016
A Lavish Gift of Love
I stood in my driveway in disbelief .... trying to comprehend what I was seeing. There in front of me, stacked neatly on a pallet was a ton of stove pellets. They had been delivered while I was napping. I knew I had not ordered them, because cash flow has been a bit tight and I had been buying 5 bags at a time, which my neighbor would kindly unload for me. That would last about a week because that is my only heat source for the house.
I got in my car and drove to the hardware store to see if I could figure out where the pellets had come from. Yes, they had delivered them and no they could not tell me who had ordered them. In fact they were under orders to not tell me if I asked them. I stood there and cried.
I tear up everytime I think about it. It is an incredible, generous and practical gift. One that I didn't expect and is absolutely overwhelming. I feel loved and cared for, supported and encouraged. It is a lavish gift of love that filled me with gratitude for my anonymous friend.
It makes me wonder how I can give that kind of love and support to the people around me? If I can make that kind of difference for someone else? I hope so ... I pray so ...
Just Connie
I got in my car and drove to the hardware store to see if I could figure out where the pellets had come from. Yes, they had delivered them and no they could not tell me who had ordered them. In fact they were under orders to not tell me if I asked them. I stood there and cried.
I tear up everytime I think about it. It is an incredible, generous and practical gift. One that I didn't expect and is absolutely overwhelming. I feel loved and cared for, supported and encouraged. It is a lavish gift of love that filled me with gratitude for my anonymous friend.
It makes me wonder how I can give that kind of love and support to the people around me? If I can make that kind of difference for someone else? I hope so ... I pray so ...
Just Connie
Wednesday, November 16, 2016
Another Day ... Another Doctor
I saw my gasteroenterologist today. He is just one of the 11 specialists I have been seeing over the past months. He believes that the hiatal hernia is playing some role in what is happening with my lungs. However, he spent a lot of time telling me why I am not a good surgical candidate.. My response was, "Good, I do not want surgery."
But with that being said, I report to the hospital in the morning for an ultra sound to take a closer look at my gall bladder. I do not even have words at having to look at another potential problem. But I will jump through this hoop as I continue to try to move forward.
I am still waiting to hear from the pharmaceutical company so I can get treatment schedule and the week is quickly disappearing. It is strange to think that I have gone from, no, no I do not want treatment, to please get this started as soon as possible. A life and death perspective seems to change things or at least change my outlook.
That is not necessarily a bad thing ... Life is precious.
Just Connie
But with that being said, I report to the hospital in the morning for an ultra sound to take a closer look at my gall bladder. I do not even have words at having to look at another potential problem. But I will jump through this hoop as I continue to try to move forward.
I am still waiting to hear from the pharmaceutical company so I can get treatment schedule and the week is quickly disappearing. It is strange to think that I have gone from, no, no I do not want treatment, to please get this started as soon as possible. A life and death perspective seems to change things or at least change my outlook.
That is not necessarily a bad thing ... Life is precious.
Just Connie
Tuesday, November 15, 2016
Busy Day
Today was busy. I have to admit that I am finding my normal kind of busy days challenging right now. It began with a morning run to Salem to pick up my lab forms and then present myself to the right lab for the specialized blood tests that needed to be run asap. Then it was back to Willamina to make a pharmacy run for the antibiotics which were being started for the sinus infection I have developed. Of course that meant I had to stop taking the maintenance antibiotic I have been taking for the last month. Then it was time to head to the Fire Station to meet the crew for a mental health evaluation they had asked me to do on a client. And then time for an insulin shot. Then I grabbed a quick lunch, dropped off the Chamber Minutes for the meeting I was going to miss in the morning, touched bases with my family doctor and headed home to rest for a couple of hours. During my "rest time" I fielded a call from one of my specialists, counseled with two different people in crisis and dealt with a barrage of text messages. Then it was back to the station for the emergency preparedness meeting and another insulin shot.
Now finally I am back home, curled up with Hope Puppy and ready for bed. I am tired, tired, tired. But I guess that is a pretty good way to head to bed... Tired.
Tomorrow is a new day.
Just Connie
Now finally I am back home, curled up with Hope Puppy and ready for bed. I am tired, tired, tired. But I guess that is a pretty good way to head to bed... Tired.
Tomorrow is a new day.
Just Connie
Monday, November 14, 2016
Hiking Photos
I was not able to download photos from Saturday's hike from my Ipad. So here are a few of the photos I took of a very gorgeous hike.
Perspective
Days like today I feel like I am wading through glue. I am tired and sluggish. My blood sugar is spiking and all I want to do is go and lay my aching head down somewhere. But the reality is that I have things to do today. I have been to yoga class, seen the Dr, gone to the bank, the pharmacy, tested my blood sugar and given myself an insulin shot (that is why I feel so bad) and have finished my sermon. I am now waiting for someone to make a vegetable donations and then I can head home for some lunch.
I find it hard to be very productive when I feel so bad, so much of the time. My lung function is slowly creeping down which it should not be on the massive steroids I am taking, my blood sugar is still having crazy high spikes and I am just so tired so much of the time.
But I remain committed to getting as much done as I possibly can, resting when I can and continuing to challenge and stretch myself. I am finding that it is really a matter of focus. Will I focus on what I do not like or only on the things that frustrate me or will I find the things that are positive and beautiful in my life and focus on that? It really does make a difference ... so I am choosing to focus on the fact that I was able to treat my crazy high blood sugar and that I got a lot of things done this morning even though I was not feeling well.
Life is good and God is even better ....
That is a perspective that makes a difference.
Just Connie
I find it hard to be very productive when I feel so bad, so much of the time. My lung function is slowly creeping down which it should not be on the massive steroids I am taking, my blood sugar is still having crazy high spikes and I am just so tired so much of the time.
But I remain committed to getting as much done as I possibly can, resting when I can and continuing to challenge and stretch myself. I am finding that it is really a matter of focus. Will I focus on what I do not like or only on the things that frustrate me or will I find the things that are positive and beautiful in my life and focus on that? It really does make a difference ... so I am choosing to focus on the fact that I was able to treat my crazy high blood sugar and that I got a lot of things done this morning even though I was not feeling well.
Life is good and God is even better ....
That is a perspective that makes a difference.
Just Connie
Saturday, November 12, 2016
Adventure Day
I snuck away today ... With the blessing of my doctor. My adventure buddy and I headed to the south coast range or the Sweet Creek Trail. We took the very short route, only 2.2 miles, because my energy level gives out very quickly. But it was gorgeous! So very glad we went.
I learned to do some new things, like plan a short hike, give myself an insulin injection in the car and learn to sit back and let someone else drive.
I find that getting out into nature, blows the cobwebs away and fills me with joy and new life. I am blessed to live in such a beautiful area with so many options to get away. Blessed to have someone to hike with. And basically just blessed.
Looking forward to the next adventure ...
Just Connie
I learned to do some new things, like plan a short hike, give myself an insulin injection in the car and learn to sit back and let someone else drive.
I find that getting out into nature, blows the cobwebs away and fills me with joy and new life. I am blessed to live in such a beautiful area with so many options to get away. Blessed to have someone to hike with. And basically just blessed.
Looking forward to the next adventure ...
Just Connie
Friday, November 11, 2016
Out of Step
I sighed as I looked at the glucose meter in my hand ... The numbers would explain the headache and how I was feeling. The numbers also meant I needed 5 units of insulin. I washed up and prepared the insulin and needle for injection. I found myself wondering if this was going to become second nature instead of the huge chore that it seemed. I thought back to how overwhelming the gamma globulin infusions seemed when I first began those. And yet prepping for those got very easy over the months. It was the treatments themselves that were difficult.
So I am hoping, that I will learn to do this more easily. To prepare a kit, to haul with me every day. To check before every meal and treat as necessary. In many ways this is like learning a new language or traveling to a foreign country. I feel out of step with what my body is doing and what my body needs.
And yet while I am on steroids, this is my reality and I want to embrace it. I have to wonder what lessons will be coming to me through this.
Hmmmm ... Time will tell. But I think God will bring me through.
Thankfully,
Just Connie
So I am hoping, that I will learn to do this more easily. To prepare a kit, to haul with me every day. To check before every meal and treat as necessary. In many ways this is like learning a new language or traveling to a foreign country. I feel out of step with what my body is doing and what my body needs.
And yet while I am on steroids, this is my reality and I want to embrace it. I have to wonder what lessons will be coming to me through this.
Hmmmm ... Time will tell. But I think God will bring me through.
Thankfully,
Just Connie
Thursday, November 10, 2016
Moving Ahead
I took a deep breath as I realized that the incoming phone call was my immunologist. I had been waiting to hear from him about treatment options. As we spoke, he began to lay out what he had been discovering. There was a new gamma globulin product on the market that seemed to have fewer reactions for users. It would be delivered sub cutaneously at home like my last round of treatment. It was a high concentration with less "other" stuff. The pharmaceutical company and the immunologist believed that with the right pre treatment that this might be successful for me. We spoke for about 30 minutes as we talked everything over. I gave him the green light to go ahead with the treatment.
Now I am realizing I have a lot of work to do here to get ready for home treatments. My house is a disaster ... a messy dirty disaster. The kind of mess that was embarrassing when the ambulance scooped me up here yesterday.
It is just so hard to get it done when you feel so dreadful all the time. I have been given the name of some house cleaning services and I am hoping perhaps I can have someone come in to help. It is hard to admit that I cannot do this on my own. But the reality is that I cannot.
So, things are moving ahead, I have a bunch of work to do. And it is time for me to get busy.
So why am I sprawled in bed? Sigh .....
Just Connie
Now I am realizing I have a lot of work to do here to get ready for home treatments. My house is a disaster ... a messy dirty disaster. The kind of mess that was embarrassing when the ambulance scooped me up here yesterday.
It is just so hard to get it done when you feel so dreadful all the time. I have been given the name of some house cleaning services and I am hoping perhaps I can have someone come in to help. It is hard to admit that I cannot do this on my own. But the reality is that I cannot.
So, things are moving ahead, I have a bunch of work to do. And it is time for me to get busy.
So why am I sprawled in bed? Sigh .....
Just Connie
unexpected Trip
I was in a Chamber of Commerce meeting taking notes when the all too familiar symptoms began to hit. My head was pounding, I was nauseous and dizzy, I was clammy and sweaty and so weak and miserable. My blood sugar was spiking again.
I took deep breaths and kept telling myself to just get through the meeting and I could go home and lay down. I was surprised when my friend Carolyn who works with the Fire Department jostled my arm and said, "I am here to take you home." By that time I was so miserable that I did not even argue as I gathered my stuff and staggered out the door.
As she loaded me into her car, she explained that the Fire Chief who was sitting next to me called for her to come and get me to be evaluated by the medic. In minutes I was loaded up on the gurney, hooked into an IV and headed toward the hospital once again.
Over the next 5 hours, they pumped me full of potassium and fluids as they worked to bring my blood sugar down. I left with instructions to present myself to my primary care dr who was expecting me. Once there I was trained how to do insulin injections and put on a sliding insulin dose before meals.
I left tearful, exhausted and grateful to be going home. Here at home I have been contemplating this new change in my life and trying to rest as much as possible. Now I have one insulin dose under my belt and am confIdent that I can do this even if I do not like it. I do know that I am really ready to not be getting sick every day. I am ready to be off this roller coaster and reclaim my life again.
I am confident that I will come through this. I am confident that there are good things ahead. I am confident that there will be joys and heartaches and things to learn as I journey through this. I just need to keep taking another step forward.
So this is me, taking another step ....
Just Connie
I took deep breaths and kept telling myself to just get through the meeting and I could go home and lay down. I was surprised when my friend Carolyn who works with the Fire Department jostled my arm and said, "I am here to take you home." By that time I was so miserable that I did not even argue as I gathered my stuff and staggered out the door.
As she loaded me into her car, she explained that the Fire Chief who was sitting next to me called for her to come and get me to be evaluated by the medic. In minutes I was loaded up on the gurney, hooked into an IV and headed toward the hospital once again.
Over the next 5 hours, they pumped me full of potassium and fluids as they worked to bring my blood sugar down. I left with instructions to present myself to my primary care dr who was expecting me. Once there I was trained how to do insulin injections and put on a sliding insulin dose before meals.
I left tearful, exhausted and grateful to be going home. Here at home I have been contemplating this new change in my life and trying to rest as much as possible. Now I have one insulin dose under my belt and am confIdent that I can do this even if I do not like it. I do know that I am really ready to not be getting sick every day. I am ready to be off this roller coaster and reclaim my life again.
I am confident that I will come through this. I am confident that there are good things ahead. I am confident that there will be joys and heartaches and things to learn as I journey through this. I just need to keep taking another step forward.
So this is me, taking another step ....
Just Connie
Tuesday, November 8, 2016
The Gift
Someone cried for me today. It surprised me, blessed me, encouraged me and made me cry.
I was attending a community meeting when a highly placed city leader from a neighboring community came in and sat across from me. It was so good to see him and he had lots of good information to share with us. At the close of the meeting he came and moved to a chair next to me and asked, "How are you doing?" I began to tell him what the doctors are saying and I watched his eyes fill with tears. He looked at me and said, "You are important to our communities. You have no idea how you are viewed." Then he looked me in the eye and said, "I am not much for praying, but I am going to be talking to God." And that is when I started crying.
He gave me an incredible gift today. He gave me love, support, encouragement and was willing to show me what he was feeling. He reminded me that though I might often feel alone. I am not alone. There are people I would never expect who are loving me, praying for me and want to help.
I am thankful for that gift, thankful for the tears, thankful for the gift of love.
Just Connie
I was attending a community meeting when a highly placed city leader from a neighboring community came in and sat across from me. It was so good to see him and he had lots of good information to share with us. At the close of the meeting he came and moved to a chair next to me and asked, "How are you doing?" I began to tell him what the doctors are saying and I watched his eyes fill with tears. He looked at me and said, "You are important to our communities. You have no idea how you are viewed." Then he looked me in the eye and said, "I am not much for praying, but I am going to be talking to God." And that is when I started crying.
He gave me an incredible gift today. He gave me love, support, encouragement and was willing to show me what he was feeling. He reminded me that though I might often feel alone. I am not alone. There are people I would never expect who are loving me, praying for me and want to help.
I am thankful for that gift, thankful for the tears, thankful for the gift of love.
Just Connie
Monday, November 7, 2016
Another Step Forward
With dismay I looked at the numbers on the scale. It indicated 3.5 pounds of fluid build up. I looked in the mirror and noted the puffiness of my face and what seemed to me, immense bags under my eyes. I lifted my leg to the counter and pushed down, noting the pitting edema and sighed. That all added up to another day on the meds to help get rid of the fluid, so it would not further compromise my breathing.
And of course all that fluid retention was caused by the steroids which are actually keeping me breathing while I wait for treatment. The steroids that I have been on since July have also been playing havoc with my blood sugar. Usually when I go on steroids I can go on a diabetic diet and keep things under control. However this has been such a long stretch on such a massive amount that my blood sugars have been dumping me in the emergency room, getting me treated at the Fire Station and frankly making me sick almost every single day.
After a particularly brutal weekend with my blood sugar, where I actually had to come home from the scene of a fire because I was sick (blood sugar tested 501) I presented myself at the doctor this morning. I did not maybe get the answers I wanted, but I got answers that I think will help. I have been put on high does of metformin which should help get things evened out. I have been given three days to stabilize and then I get put on insulin on demand. So I would take it when I have one of those crazy spikes I have been having.
Yes, I admit, I cried as I got the news, but I was having a blood sugar spike at the time. But though it is something I did not want, I know that it will will help me feel better. And I am confident that when I am in able to dump the steroids some months in the future, my blood sugar will normalize once again. I am looking forward to that day. Looking forward to getting off this emotional roller coaster and looking forward to living life again.
I am trusting and believing that there are good things ahead. This is just another step forward.
Just Connie
And of course all that fluid retention was caused by the steroids which are actually keeping me breathing while I wait for treatment. The steroids that I have been on since July have also been playing havoc with my blood sugar. Usually when I go on steroids I can go on a diabetic diet and keep things under control. However this has been such a long stretch on such a massive amount that my blood sugars have been dumping me in the emergency room, getting me treated at the Fire Station and frankly making me sick almost every single day.
After a particularly brutal weekend with my blood sugar, where I actually had to come home from the scene of a fire because I was sick (blood sugar tested 501) I presented myself at the doctor this morning. I did not maybe get the answers I wanted, but I got answers that I think will help. I have been put on high does of metformin which should help get things evened out. I have been given three days to stabilize and then I get put on insulin on demand. So I would take it when I have one of those crazy spikes I have been having.
Yes, I admit, I cried as I got the news, but I was having a blood sugar spike at the time. But though it is something I did not want, I know that it will will help me feel better. And I am confident that when I am in able to dump the steroids some months in the future, my blood sugar will normalize once again. I am looking forward to that day. Looking forward to getting off this emotional roller coaster and looking forward to living life again.
I am trusting and believing that there are good things ahead. This is just another step forward.
Just Connie
Sunday, November 6, 2016
Laughter
We were sitting around brainstorming how we could best have an unforgettable baby shower announcement at church ... And that is how it all started.
The result, was four of us who met in the foyer at church stuffed pillows under our shirts and waddled our seemingly pregnant selves up the main aisle. The fact that this group of four contained myself the pastor, an 84 year old woman, a 67 year old woman and a 60 year old woman was just part of the fun.
You could hear the ripples of laughter move through the congregtion as people got a good look at us. By the time we reached the front everyone was laughing. We made the announcement, called the real pregnant woman up and had the chance to share some love.
As we waddled back down the aisle I was struck by how wonderful it was to laugh and laugh. And how fun it has been to find the plethora of questions that have arisen since the photos hit social media.
It is good to laugh. More than that it is healing to laugh. Scripture tells us that a merry heart does the soul good. It is so very true. I think it is time to laugh and laugh and laugh some more.
Just Connie
The result, was four of us who met in the foyer at church stuffed pillows under our shirts and waddled our seemingly pregnant selves up the main aisle. The fact that this group of four contained myself the pastor, an 84 year old woman, a 67 year old woman and a 60 year old woman was just part of the fun.
You could hear the ripples of laughter move through the congregtion as people got a good look at us. By the time we reached the front everyone was laughing. We made the announcement, called the real pregnant woman up and had the chance to share some love.
As we waddled back down the aisle I was struck by how wonderful it was to laugh and laugh. And how fun it has been to find the plethora of questions that have arisen since the photos hit social media.
It is good to laugh. More than that it is healing to laugh. Scripture tells us that a merry heart does the soul good. It is so very true. I think it is time to laugh and laugh and laugh some more.
Just Connie
Saturday, November 5, 2016
i Want My Life Back
My heart hurts ....
So much has been taken from me over the past 5 years by the illness I have been fighting. I feel like I have lost so much that gives me joy and life. But I have worked really hard to stay positive, optimistic and focus on the things I am able to do. I am optimistic by both nurture and nature. It has held me well on this journey.
Today I laid low all day, feel pretty tired and miserable. So when I was called to the scene of a structure fire I was pretty sure I was good to go. I jumped in my car and headed to the fire which was not that far away. Arriving on scene I slipped into my turnouts, put my helmet on and headed up the hill. The reality was I was winded and short of breath by the time I got there. But taking a deep breath I put my mask on and went to check in with the command officer. He handed me the white board and told me to record people in and out and rigs as he gave me a scene size up. When the Deputy Chief arrived on scene, I passed the board on to her and began to take photos. Within minutes I was shaking and short of breath. Frustrated, I sat on a rock wall and began drinking water, trying to recoup. But the reality was that I was not getting better and after I had been on scene an hour, I cleared my passport with the chief and headed home so I would not distract the crews.
Here at home .... Well I have grieved. Yet another thing that is important to me, that I cannot do. This emotionally is a huge loss and right now I cannot see around the loss. I am tired, tired inside and out. Tired of being sick, tired of losing so many activities that are important to me ... I am tired.
I just ... I just ... I just want my life back ....
Just Connie
So much has been taken from me over the past 5 years by the illness I have been fighting. I feel like I have lost so much that gives me joy and life. But I have worked really hard to stay positive, optimistic and focus on the things I am able to do. I am optimistic by both nurture and nature. It has held me well on this journey.
Today I laid low all day, feel pretty tired and miserable. So when I was called to the scene of a structure fire I was pretty sure I was good to go. I jumped in my car and headed to the fire which was not that far away. Arriving on scene I slipped into my turnouts, put my helmet on and headed up the hill. The reality was I was winded and short of breath by the time I got there. But taking a deep breath I put my mask on and went to check in with the command officer. He handed me the white board and told me to record people in and out and rigs as he gave me a scene size up. When the Deputy Chief arrived on scene, I passed the board on to her and began to take photos. Within minutes I was shaking and short of breath. Frustrated, I sat on a rock wall and began drinking water, trying to recoup. But the reality was that I was not getting better and after I had been on scene an hour, I cleared my passport with the chief and headed home so I would not distract the crews.
Here at home .... Well I have grieved. Yet another thing that is important to me, that I cannot do. This emotionally is a huge loss and right now I cannot see around the loss. I am tired, tired inside and out. Tired of being sick, tired of losing so many activities that are important to me ... I am tired.
I just ... I just ... I just want my life back ....
Just Connie
Friday, November 4, 2016
Rest Day
One of the unpleasant side effects of the massive amount of steroids I am on is that I do not sleep well. This is very different from my norm. I typically sleep well and solid all night long. But on steroids I sleep an hour or two and then I am up for an hour or two. Sleep for an hour or two .... Well it just goes on night after night.
Today, I drug myself out of bed at 5am for my yoga class. Which is also unusual that I am so slow and tired in the mornings, but I got up and went. Class was a struggle as it has been for the last few weeks, but I believe it is important for me to be there and to keep fighting for health. After class I ran home, cleaned up and then met my Friday morning group for breakfast. From there I did a pharmacy run and then headed home. Where I promptly went to bed and slept ... Yes for an hour or so.
I found myself dozing the day away ... Until late in the afternoon my neighbor man came over to help me put away some things in the attic. And I have to admit that it took everything I had to make myself get up and go do it. But at least that is one task that is actually finished .... Thankfully!
I have spent the rest of the time laying in bed, dozing and reading. It is extremely rare for me to do this ... But everything in me was screaming to rest. Well that and the headache, muscle cramps and everything else I have been fighting for weeks.
But hopefully tomorrow I will be better rested and ready for all the tasks at hand. Because it is looking like a very busy day.
I am thankful for a day to rest, thankful for my neighbors help. And I am thinking thankful is a good way to end the day.
Just Connie
Today, I drug myself out of bed at 5am for my yoga class. Which is also unusual that I am so slow and tired in the mornings, but I got up and went. Class was a struggle as it has been for the last few weeks, but I believe it is important for me to be there and to keep fighting for health. After class I ran home, cleaned up and then met my Friday morning group for breakfast. From there I did a pharmacy run and then headed home. Where I promptly went to bed and slept ... Yes for an hour or so.
I found myself dozing the day away ... Until late in the afternoon my neighbor man came over to help me put away some things in the attic. And I have to admit that it took everything I had to make myself get up and go do it. But at least that is one task that is actually finished .... Thankfully!
I have spent the rest of the time laying in bed, dozing and reading. It is extremely rare for me to do this ... But everything in me was screaming to rest. Well that and the headache, muscle cramps and everything else I have been fighting for weeks.
But hopefully tomorrow I will be better rested and ready for all the tasks at hand. Because it is looking like a very busy day.
I am thankful for a day to rest, thankful for my neighbors help. And I am thinking thankful is a good way to end the day.
Just Connie
Thursday, November 3, 2016
Woodpecker Attack
Over these past 6 months as my body has struggled and additional drugs have been added, I have found myself in a new physical low. It is both unanticipated and unwanted. I have found myself struggling with new limitations that are straining my ability to cope.
My 8-9 yoga classes a week have dropped to 5-6 classes that I often have to rest through. My normal stamina and strength is a fraction of my norm. I find myself tiring easily and this week I have actually been slipping home at lunch when I can to eat and rest before heading back to the office. I have been referring some of my emergency calls to my backup chaplain. And though I am absolutely confident that he does a great job, it hurts my heart that I am not doing it.
My house and yard are beginning to look like it is abandoned. It seems when I am home, I am sleeping or have n energy to do the normal maintenance and chores or any household. It has been all I can do to keep the dishes washed, the bathroom scrubbed and clothes washed. I am beginning to think that one of these days I will walk in and I will be strangled by the cobwebs. I am finding it hard to do everyday things like carry in the 40 pounds of pellets to load the stove, so I can have heat for the day. And the more it piles up, the more overwhelming it feels.
And I have to admit that as my energy and physical ability has flagged ... There is a sense of discouragement that is often pecking at me. Rather like a woodpecker on a tree, it pecks and pecks and pecks. It whispers words like, "you are not doing enough." And "you are failing". I try hard to keep those whispers at bay, but they are there ... peck peck ... pecking away.
I am blessed with a myriad of people who are praying for me, who constantly encourage me. My family doctor is on, who never fails to tell me to not give up, to trust in the day I will be healed. And it means so much to me. My parents are unswerving in their love and support. But I have to admit there are days that it is very hard.
But I am choosing to believe that it will not always be like this. I am going to choose joy, because I can and to trust in a beautiful future. I am also going to try to do something that is very hard for me. I am going to ask for help. At least I am going to try. It is not my strong suit, but yet I think it will not only bless me, it will bless those who help.
I will continue to fight, to trust and to live in joy. I believe that God has me in the palm of his hand and there are countless people loving me and praying for me.
And really what could be better than that.
Just Connie
Tuesday, November 1, 2016
Another Step Forward
I have to admit ... I am feeling a little shell shocked tonight. There has been a lot hitting me from a lot of directions and medically ... Well it is just a lot to take in and process how I actually feel.
The immunologist seemed to be in complete agreement that I need to be in treatment asap. He is going to consult with the pharmaceutical company and call me with a treatment recommendation. I have to admit to some ... Well apprehension. I was so very sick when I was on treatment, it took up so much of my life. And yet when they point out that I am dying, I guess it kind of puts it in perspective.
The dr is considering IVIG this time. Which means instead of a sub sutaneous infusion I would get an IV treatment. But instead of every week, it would be once a month or so. That is very appealing to me in so many ways. But I will see what he ends up recommending.
I know that there are things I have to get done before treatment begins. My house is a disaster, I have so many projects that need to be done or finished. But I have been so sick and so tired. It is very hard to find the time or the energy to get them done.
But I guess the next few weeks will be the suck it up sissy pants time. It will all have to be done regardless. But in reality, all I want to do is go to bed and sleep for a month or so. Well that and go and sit in the woods for a few hours and let the beauty of creation help fill me with peace.
Sigh .... I guess just another step forward. It is just getting harder and harder to drag my foot there.
Just Connie
The immunologist seemed to be in complete agreement that I need to be in treatment asap. He is going to consult with the pharmaceutical company and call me with a treatment recommendation. I have to admit to some ... Well apprehension. I was so very sick when I was on treatment, it took up so much of my life. And yet when they point out that I am dying, I guess it kind of puts it in perspective.
The dr is considering IVIG this time. Which means instead of a sub sutaneous infusion I would get an IV treatment. But instead of every week, it would be once a month or so. That is very appealing to me in so many ways. But I will see what he ends up recommending.
I know that there are things I have to get done before treatment begins. My house is a disaster, I have so many projects that need to be done or finished. But I have been so sick and so tired. It is very hard to find the time or the energy to get them done.
But I guess the next few weeks will be the suck it up sissy pants time. It will all have to be done regardless. But in reality, all I want to do is go to bed and sleep for a month or so. Well that and go and sit in the woods for a few hours and let the beauty of creation help fill me with peace.
Sigh .... I guess just another step forward. It is just getting harder and harder to drag my foot there.
Just Connie
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