2nd Treatment Thoughts

The second treatment is now behind me. It took four hours to infuse the 7 grams of gamma globulin. The side effects were fairly normal, migraine, nausea, fatigue and general achiness. I was up and down all night and today I am very tired, nauseous and fighting a bad headache. But all of it is worth it.

I decided that I am going to rest this morning and work on my sermon here  at home. I am pretty drug out yet. I am expecting to begin to get acclimatized as the treatments go on. At least that is my hope. Some of this process I had forgotten like the overwhelming fatigue. But it is all coming back to me now.

Now, the concern is how long the new insurance will take to approve treatment. I need to not have a lag in treatment. So that is my prayer and concern. Please Lord, move the insurance along.

Please ... Please ... I want to get well.

Just Connie

Dinner Date

By life style and income I do not go out for expensive dinners. Tonight I had a friend take me out to a high end restaurant. The kind of place that has 10 tables or less. I have to say that it was absolutely amazing! It was some of the best food I have ever eaten, beautifully presented and served. Incredible flavors .... Well I could go on and on.

It occurred to me as we were savoring each bite, that this was really a dining experience more than the meal. The beautiful setting, incredible servers and then of course ... The food. The company was wonderful as well which just made the whole evening better.

I am grateful for the chance to experience something that is really outside of my norm. This was delightful both for the food and the experience. Friends make everything better ... And I am feeling blessed on so many levels tonight.

And blessed is always good ...

Just Connie

Bring It On

Pastors wade through a lot of stuff in any given week. We counsel with people whose lives or marriages are struggling. We spend time with those who are grieving and sick. We attend church meetings, community meetings, city meetings, denomination and training meetings. We study and write sermons and papers and letters. And usually in the midst of doing all of that we get complaints that we are not doing something enough. It is just part of the job. Usually it just rolls off my back as I try to explain why I am doing what I am doing and go on with what I know God has called me to.

This last month that has been harder as I have been so sick. I am finally climbing out from under everything, even though I am in the beginning stages of treatment, I am feeling better as the pneumonia has cleared up and my lungs have perked up some. I think one of the things that has distressed me is that there is truth to the fact that I have not been doing a lot of the things I usually do. But most of what I have given up has not been church things, it has been the community things I serve as a representative of the church.

So now I am beginning to pick up all the pieces and  start to get things laid out in a normal pattern again. Part of that will be sharing just how I have been spending my time and what my plans are in the weeks ahead. It is good to have more energy and more time and to dig into ministry again.

It is good to be looking with anticipation to what will be happening. I knew there was good things ahead, but now I feel ready to meet them head on.

So  bring it on ... I think I am ready ...

Just Connie

Day Thoughts

Today, I got to celebrate Chrustmas with my parents and my son and his family. I had a lot of fun and it was so good to see them. And of course so much fun watching my 6 year old grandson open his gifts. I think I did good in picking out what he likes. That was good.

Mom and Dad gave me their gift. It was a beautiful card telling me they loved me. Mom looked at the card in disbelief and asked, "Where is the rest of it?" I pointed out that the card had been sealed and she watched me open it. I then started laughing and said, "I am going to call Toni Ann and ask her if she got the same thing for Christmas!"

It felt good to laugh and on my way out I got to throw the football with my grandson. He was amazed that I could throw a perfect spiral. It made me laugh and I told him that Great Grandpa made sure we could all throw a football correctly. I then pointed out that my grade school principal had me teach the boys even though I was not allowed to play.

It was a good day and I feel blessed. And that is a good way to end the day.

Just Connie

Frustrated

My body frustrates me! So often right now it does not do what I want it to do. And this morning when I needed it to be functioning and well, once again it did something unexpected and unwanted.

I woke up feeling fairly good this morning. Lung function is slowly coming up and I felt good about my plans for the day. Preaching for Christmas morning services and then overseeing the volunteers for the big Community Christmas Dinner.

I got to the church bright and early and laid my sermon out, got everything ready and then floated around chatting as people came in for services. I was chatting in the foyer 5 minutes before service when suddenly, I was sick and sprinting for the  bathroom. After losing everything I had ingested for the last week, I shakily put myself together and sent someone across the street to purchase a diet 7 up. The brilliant man also brought me some saltine crackers and I managed to get through church services without socially embarrassing myself.

But I realized I was in no shape to go and volunteer for the Community Dinner, so after church I headed home and curled up on the couch, where I spent the rest of the day dozing and watching Dr Who.

I am so ready to be better. I want my body to start cooperating ... I want my life back.

I am ready ...

Just Connie

Treatment Day

Today  was my first treatment. It went well, though I have to admit that I feel worse than I thought I  would with such a small amount. By the end of the hour and a half treatment, I had a migraine and was nauseous. The migraine is a bit better right now but the nausea is at full throttle.

On Christmas Eve I will take the second dose which is twice as much as I did today. I am really hoping I will acclimate and the side effects will taper off. No matter how bad I feel I know that every drop is bringing me life and that is worth it.

It worked out very well having my friend Carolyn here for training and she will help me place the needles for the next treatment. Which will be nice to have help when I need it.

It occurs to me that my attitude is very different this go around with treatment. I hated doing it every week and resented the time that it stole from me. This time I am grateful to start and willing to invest the time to help me get better. I really think that attitude is a better frame for my healing.

Now tomorrow I will jump back into life and hopefully get some  things done.

At least that is the plan ...

Just Connie

Tomorrow is the Day

Tomorrow is the day. I will be glad to have this first treatment behind me. I did not think I would ever come to the point when I would be thankful for an upcoming treatment ... But I am. I guess perspective is everything. When they tell you that you are dying and treatment is your only option' suddenly it does not seem nearly so bad.

Tomorrows treatment will be administered by a home health care nurse and one of our paramedics and one of our EMR's will be there to be trained along with me.  I know that last treatment go around I was very thankful for the backup of the paramedics when I could not reach the spot to place the needles or I sprung an unexpected leak.

Both the paramedic and the EMR that will be there tomorrow are very good friends and it will be good to be surrounded by love and teasing as I begin a new chapter in life. It makes everything better to know that you are loved and supported. So much of what I do is by myself and I work so hard to be independent but these last few months have really taught me that I cannot do this alone. I need the love, support and help they bring so generously.

So hoping for a good night's sleep and a peaceful heart as I take this journey.

Just Connie

Friendship

Had dinner with a dear friend tonight. I have found that friendships have grown very important to me.  I have been contacting those I love and sharing what is going on with me. I want to make sure that they know I love them and they are important to me.

Tonight was a great time of getting caught up and affirming our friendship. I really appreciate being able to share openly with people how I feel about them and what they mean to me. When time is potentially short, it seems to take the embarrasment and fear out of telling people how you feel. I am glad for that push.

My hope is that when this health crisis is behind me, I will not let go of the importance of telling people how I feel and making time to spend with those I love. There are good things I am learning as I journey through this.

I will keep learning and growing ...

Just Connie

Approval

After a month and a half of fighting, nagging and struggle, the insurance finally approved my new gamma globulin treatment today. That is the good news. The bad news is that half the staff is out for Christmas and I still have to get Meds shipped and the nurse scheduled to cone out to do the first treatment.

They are saying treatment mid week, I am praying that is so. I just know that I continue to struggle and tomorrow I do a 20 mg step down of the extra prednisone I have been on and my lungs usually struggle to adjust. I am  just beginning to see some improvement in some of my lung function.

I am also still waiting to hear from the medical supply company about the overnight oxygen sat testing. I hate having to nag every little piece to get it done. So tomorrow I will call the pulmunologist to find out what company I have been referred to, so I can call and get it scheduled. Hopefully this week.

I just want to be better and I am willing to do what needs to be done to help make it happen.

I just wish I had more energy ....

Just Connie

Hard Call

Sigh ... I made a hard call today. One that I did not want to make. I am going to have one of my associates preach in the morning nd I am going to rest and hopefully be ready to preach tomorrow night for the Candle Light Service. I love preaching and it is really hard for me to step back when I had already given several weeks of preaching.

But the reality is that I am really struggling t get a good breath and my lungs hurt. I am also doing every couple of hour breathing treatments. I am hoping by tomorrow I will begin to see improvement from the new antibiotic. So having someone else preach is the right call for the morning.

So tomorrow I will sleep in, do all my treatments and rest.

Sigh ....

Just Connie

Not Too Bad

We'll I got a call from my pulmunologist and it seems I have pneumonia. To be honest I am rather relieved that there is a reason for this massive downturn. He had the actual X-ray from 2 weeks ago and the one from last night. He said it was definitely pneumonia when you compared them and the collapse of the lower lung. I just know it is hard to breath and my chest hurts. And that I am so very tired all the time.

So I am on new antibiotics and I will do a lot of resting tomorrow. I will meet with my family dr early and do some stretches which will be good. And then come home and rest.

So I know more than I did last night, I have new medication and I am expecting to start breathing better soon.

Not too bad ....

Just Connie

A Hard Day

Hard, hard, hard .... Today has been difficult. I made an appointment with my family doctor to take a look at my throat and give me input on my breathing and lungs. My throat ... Well I have another infection ... thrush to be specific. So yet a third antibiotic to start again. My lungs ... Well that is where it began to get hard. My oxygen levels have been dropping when I lay down or sleep. I mentioned it to my family doctor he had asked me to tell my pulmunologist. So I left the pulmunologist  a message before I saw my family doctor. He called while I was seeing my family doctor. He wants me to have an overnight test to be evaluated for nighttime oxygen use.

That was not what I expected or wanted to hear. By the time my family doctor came back in, I was in tears. It is just another sign that I am worse. I do not want to be this person. But I am blessed with an incredibly caring family doctor who hugged me, let me cry and then told me he believes I am as bad as I am going to get. Treatment will begin and I will begin to heal and get better. He also pointed out that I have been hit by the perfect storm on every side. There is nothing I could do different or better. I have done nothing wrong and I am not making it worse.

He really encouraged me and I headed home to process everything. I spent the day puttering around and working on the Christmas decorations and resting. It was 5pm when the pulmunologist called again. He wanted a chest X-ray for me asap. He wanted me to head to the hospital now, he had already sent the order in. He also wanted me to bump up my steroids.

I looked out the window at the icy roads and began to pull my boots on. I texted my neighbor to let him know I was leaving for the hospital and grabbed my coat. That is when my neighbor offered to go to the hospital with me. So for the very long, slow and slippery trip I had good company.

When we got to the hospital and checked in, they could find no order for a chest X-ray and told me to come back tomorrow. That us when I began to tear up, but I made the effort to call the pulmunologist who of course was gone and unavailable. I texted my family doctor my frustration who immediately offered to order the chest X-ray. So the X-ray was ordered and done and we were soon taking the long, slow, slippery trip back home.

Now I am home ... Tired and still processing everything. Wanting this part to be over already.

Sigh ....

Sighing and Yet Blessed

Sigh ... I have been struggling with shortness or breath and up and down  oxygen saturation  levels. I finally admitted to my family doctor that when I lay down my levels were dropping in the 80's. He thinks I need supplemental oxygen at night. So tomorrow I message my pulmunologist.

I pointed out to my doctor that I did not want to be that person. He pointed out that I lose brain cell function when I drop below 90. Suddenly oxygen did not seem quite so bad. Unwanted but not quite so bad.

I also had conversation with the drug company today. They still do not have approval to move ahead. I am getting discouraged ... I have no idea when treatment will start. I just know I am getting worse. Even on 2 antibiotics and massive steroids. I am getting worse.

That is sometimes hard to wrap my mind around because until 7 months ago I always bounced back from these downturns. But this is where I am am right now. I refuse to focus on the worse. I choose to focus on the fact that treatment is coming, the antibiotics are working and my doctors are caring and working hard to make me better.

There are good things ... I am blessed ... And that is a good focus.

Just Connie

Life and Blessings

Some days are hard ... Today was one of those. One of those days when I just feel bad and end up laying down while I am trying to get ready for work. It frustrates me because my stats were not all that bad ... yet I felt really bad. But I eventually got ready and headed to the office for staff meeting.

Staff meeting went well, and I made a stop at the Fire Station to sign a check and pick up a package and get an insulin shot. From there I headed home for lunch and rest. I rested for a couple hours and then was picked up for a basketball game which only lasted two hours. But by the end I was shaking with exhaustion and went and laid down in the car.

I have to admit that I find this weakness very frustrating. And still no news on treatment. I so want to begin to really get better and not just put a bandage on it. I know that I am losing ground and there is so much more I want to do. And I find myself unable ... To do the things I want to do.

And yet still life is rich and wonderful. I have been give an opportunity to tell people what they mean to me. Few people are given that. I am thankful for the chance and as God has laid people on my heart, I have written and told them I love them.

I will try to focus on the blessings I am being given. It matters what you focus on, and I choose life and blessings.

There is good stuff ahead ...

Just Connie

Today

After my early morning yoga class, I cleaned up and headed to the office to work on my sermons. Sermon number 1 for Sunday morning got done, by put as I started sermon number 2, the Internet was up and down, up and down ... Effectively stopping my research. I finally gave up and told those manning the church office I was going to make a bank run toros it my check and then head home to work where I could actually get internet.

By the time, I stopped at the bank, picked up my package from the fire station, it was time for lunch. And of course that means, blood sugar testing and insulin and then lunch. Once I had cleaned up lunch, it was time to call my immunologist (10 more days of antibiotic) and try the drug company and nag them more about approval for treatment. Supposedly, they will call me tomorrow. We will see.

I no sooner got off the phone when my neighbor man came over to help me take boxes up to the attic. By the time I finished that, I was very short of breath and exhausted. So time to lay down for a while and let my body recover as I listened to Christmas music.

By then, it was late afternoon and time to make a pharmacy run (wasted trip, they are out of my antibiotic). And then it was dinner time. It is hard to understand where the whole day can go so quickly. But before I knew it, I was washing up dinner dishes and heading for bed and I still have a couple sermons to prepare.

But tomorrow is another day, and I will try again ...

I guess really, that is all any of us can do ....

Just Connie

Ornament Exchange 2016

Tonight was our Annual Ladies Ornament Exchange at the Church. This is always a wild time and a wonderful way to spend some time together. Tonight was a lot of fun, but probably too much running for me.

The whole premise is that you can choose a wrapped gift off the table or steal an ornament that has already been opened. Of course the fun is in the stealing. You have 30 seconds to steal someone else's gift when yours is taken. After 30 seconds a gift has to be chosen off the table. As you can imagine, the is lots of laughter as we try to beat the clock and grab the ornament we want.

I opened up 4 different gifts and had them all stolen multiple times. I actually had the chance to steal my favorite back at the very end. It never happens that way, so I was very surprised. I ended up with a very nice Christmas stocking filled with ornaments. I have already hung all the new ornaments on the tree and hung the new stocking up.

I am very glad to be able to spend play time with the ladies of the church. It is all to rare that we get to do that. Good times, good food and plenty of laughing.

It doesn't get better than that ...

Just Connie

Shopping Day

I am fortunate, my adventure buddy Tami is also a shopping diva. So when I found myself in need of a formal dress, she is the one that I turned to. So this morning once the ice was beginning to melt off the roads, I headed into McMinnville where I met Tami and we headed to Wodburn to the Outlet Shops.

I tried on almost every sparkly thing in the the store (Dress Barn, my favorite place) and shock of shocks I actually found a dress that I loved and Tami loved. For good measure, I also found a red sparkly shirt I can wear with my suit. So I felt that I was very successful.

Shopping can be so overwhelming and it is so much easy when someone is there with you giving you an opinion. I am very thankful to have had Tami with me today. It has got me thinking about how most of life is so much easier when you have friends to help walk you through it.

I have been blessed by my parents and their constant support, but my heart friend Carolyn and my adventure buddy Tami. All of them have cried with me, encouraged me, given me advice and helped me walk through these very difficult last few years. I know I cannot do this alone.

I am also blessed by a church full of people who love me and pray faithfully for me as well as a town full of people who are also loving me and encouraging me. It reminds me that even though sometimes I might feel alone, I am not alone.

And not alone is a pretty good place to be.

Just Connie

A Good Evening

I went to a church event of a church in a nearby community tonight. This is a church who has faithfully prayed for me and I love the people. It is pastored by very dear friends. It has been over a year since I have been well enough to be with them for something like this.

Tonight I joined them for a sock exchange. We all brought a pair of wrapped socks and read "The Night Before Christmas". Everytime "the" was said we passed our wrapped socks to the right. At the end of the story we unwrapped the socks in front of us. It was a lot of fun and a lot of laughter.

There was good food, good fellowship and lots of love and laughter. I am very glad that I went. I just wish that my energy would have held out longer. I wanted to stay and visit, but I still had to drive home.

But I was there and it brought joy to my heart to be with them. It was a good evening ...

Just Connie

Ughhh

I was at the station when my GI tract began complaining. I know the drill and knew that I probably had several miserable hours ahead of me. I was just finishing up a breathing treatment and the freezing rain was letting up for a little bit so it seemed like a good opportunity to beat feet home. Well head home in 4 wheel drive carefully and cautiously after a day of snow and ice.

So I packed up and headed home and actually got in the door and my stuff carried in before my body screamed it was done. The problems as the doctors explained it to me is that my body is tired ... And sick and I am having a systemic reaction. It means nausea and vomiting and all kinds of intestional problems. All hitting at once. It makes for a very miserable few hours. And it sometimes dumps me in the ER with dehydration and electrolyte problems. Since it is impossible to replace fluids at the rate I am losing it.

I think after four and a half hours, the worst of it hopefully is behind me this time. At least I sure hope so. Since it seems to hit every few days. You would think I would begin to get used to it. But so far ... Not really. At least I do have those who check on me and I can complain to. Though I do try not to.

But tomorrow is another day. I am hopeful that things will be  much better.min fact I am supposed to pick up my new Christmas Tree tomorrow. I am very excited!

My house is beginning to look like Christmas!

Just Connie

Choosing

Still no phone call from the pharmaceutical company. That means that the insurance still has not approved treatment and treatment will not be beginning this week. It is frustrating to continue to go downhill while the insurance company messes around.

Right now my lungs are150 points below normal. I am on 2 different antibiotics. I am still on massive doses of steroids and I am not only not getting better, I am slowly getting worse. I m tired all the time, often sick to my stomach and still fighting to stay out of the ER. Any day that I am not in the ambulance as a patient I am a happy camper.

On a happier note, I am beginning to put the new bedroom together. Tomorrow I put the bed together and I order a mattress today and hopefully it will be here soon. It will be wonderful to have that room useable so I can begin to not only use the room, but begin to put Delinda's things away again. Get both the spare room back and my front room back again.

I have also put some Christmas decorations up. All my nativity sets are up and someone gave me some lights and I put those in the front windows. Today the Conference Office offered me a tree and if the weather is good I will pick it up tomorrow. So my house will be looking pretty festive. Much more than it has the last few years.

I am choosing to focus on the positive and let the rest of it just be what it is. I cannot change it, other than to do what the Dr's are telling me to do. So it does no good to rant and wail because it is not happening the way I would choose. It is what it is and I choose peace.

It is a good season to choose peace ... And hope ... And joy and love ...

And I think I will ....

Just Connie

Unexpected Joy

I was watching a movie and checking Facebook when the Face Time request dinged on my IPad. As I hit the accept button and the video camera kicked in, I saw a big smile on my face as my daughter and her family popped up on the screen.

As we talked the boys ran and jumped and played. I watched in amazement as my son in law did arm curls with the boys hanging off his arms and push-ups with them sitting on his back. They were having so much fun and it was such wonderful chaos. It made me long for the days that Joy was that age. But that was so very long ago and so much has changed since then.

It wasn't long before the boys were showing the Christmas tree and of course moving all the ornaments to the same branches. I reminded Joy that is why they always had a tree of their own that I promised I would not move any of the ornaments after they hung them up. It was so much fun to watch and be part of their evening.

All too soon it was over and we were saying goodbye and blowing kisses as the boys were off for their evening bath time. But it has left me with a big smile on my face and such an appreciation for how technology can connect us in such wonderful ways. 

I feel blessed and happy and that is a great way to end the day ..

Just Connie

A Snow Sick Day

We are getting our first snow of the year today. And since it would not let me post a picture of my backyard today, I found a picture of my sheep dog Charlie that always makes me smile, she loved the snow and I still miss her. She was a wonderful coma ion, a true gentle giant.

But today, we are getting snow, and me ... Well I am home with a virus. At least I have the flexibility this week to lay low for the most part because I am still waiting for a call to tell me about treatment which is supposed to begin this week. I am beginning to think that it is is not going to happen yet again. But I am letting it be what it is and try to keep myself as healthy as I can. 

The thing this snow/sick day has done has given me w chance to do some organizing and get my nativity sets up. I only have one more to put up, some lights to hang, a wreath to fix and some wrapping stuff to put away. Then the next task is to shampoo the carpet in the guest room so I can begin to sort putting the new day bed together. Those projects are always frustrating to me because the directions are always poor and I never to seem to have the right tools. But I will do my best and then I will order the mattress that the bed will need and begin to put the room together. Finally!

So all in all, I guess not a wasted day, not the day I had planned. But still productive considering how I am feeling.

Tomorrow is another day and hopefully the treatment schedule will be laid out by then.

I am hoping .....

Just Connie 

Light Parade 2016

Today was the annual Light Parade in Willamina. To prepare I spent the day in bed resting. So just before line up time I went to the church dressed like I was taking an Artic Expedition. And bundled myself into the gator that was pulling the float. I wrapped a strand of lights around my head and spent the next hour preparing and waving down Main Street.

There were lots of happy faces as the parade progressed down the street.   It gladdens my heart to be part of the parade every year. Even though physically it was a stretch, it  breathed life into me in a very special way. Now tonight I am curled up in bed and reflecting on a great evening.

Even with everything going on with my body I feel blessed and loved and that is a pretty good way to be celebrating Christmas.

I think this is going to be an incredible Christmas.

Just Connie

ER Run

I curled into a fetal position as my aching stomach complained. I had Ben sick all night and I could not seem to stop throwing up. I knew I was dehydrating but kept hoping that it would soon stop. By at 5 I wa even sicker and I texted my doctor who texted me back in all caps "Call 911 NOW!" As usual I tried talking him out of it, but he was adamant .. So like a good compliant patient )who am I kidding .., I was grumbling the entire time) I called and soon my good friends and coworkers the paramedics were at my place loading me into a gurney and starting IVs yet again.

They began fluids and drugs to help with the nausea and soon had me at the hospital where they left me with hugs. Over the next few hours the hospital worked to try to get my nausea under control until they finally found a combination that worked and knocked me out. It was a double blessing. And about 6 hours after the initial call to 911, I was being released and  sent home to rest.

At home I was blessed when my parents came to check on me. I gave found that you are never too old to need your mommy when you are sick. And even though I slept the whole time I still needed and appreciated my mother being there. Both my parents are such incredible blessings to me. I am so very fortunate.

After they left, I slept till 9pm to basically wash up and go back to sleep again. Now today I am doing better, though my lungs are still low. But I am working on it as much as I can. I can honestly say, that I am very appreciative of the emergency responders in new ways as well as the ER, but oh so ready to not do this again. I twitted at the paramedics yesterday and said I am becoming on of those frequent flyers ....

It makes me even more ready to begin treatment this week. I want to be better. I want to get off this rooked coaster and make my body strong and healthy again. It gives me a whole new appreciation for the strong body I have had most of my life. I am confident that I will get there again.

I find that I have a great love of life and the people in my life. I do not want to regret how I have spent this time. I hope that I tell my friends and family enough how much I love them. They are so very important to me. If I have not told you to your face lately, and you are reading this, I love you. I live what you breath into my life and the joy you bring me. My prayer is that you will be blessed and happy.

There are good things ahead .. For all of us ...

Just Connie

Over the past few days my lungs have been getting worse. Bad enough that I got a very kind lecture from my doctor this morning about pushing too hard. He asked me to contact my Pulmunologist and let him know I was worse. I did as requested and got news that I did not want to hear ... Go to the ER. Of course I did not think I was bad enough, so I texted my family doctor who said ... Go to the ER. Being stubborn, I headed to the fire station. And within minutes they were putting in an IV, had me on breathing treatments and were rolling a gurney in.

I have to admit my breathing was fast and shallow and I felt horrible but whether I thought I was that bad or not I was soon at the hospital. In minutes they had me stripped down, x-rayed, blood drawn and continual breathing treatments being administered.

It was during one of the breaks in treatment that I received the call from the home health care nurse to schedule my gamma globulin infusions. The infusions that are supposed  to save my life and get me off this crazy rollercoaster I have been on.  They calmly told me that the earliest they could come out was Christmas week.   I stammered and stuttered and finally asked to be put on a cancellation list and slowly hung up. And like any rational adult ... I laid there and cried.

I looked at all the tubes in my body, felt my lungs struggling for air and thought for the first time, "I am going to die before they can get treatment going," I kept telling myself to focus on the task at hand ... Breathe in .... Breathe out. But while I was doing that I texted my family doctor with the news, who told me to tell the immunologist what was going on. So I did send a message but everything in me knew that there was nothing he could do.

Everytime I thought about it, I cried even after I was allowed to go home. I couldn't talk about it and knew that if I was fearful, others would be as well. I needed to find that center of peace that has been sustaining me. But I could feel the darkness beating on me.

Just a little while ago the immunologist called me, he has been talking with the drug company and they are coming up with an alternative plan that will begin next week.  And at that moment everything changed. Hope and light streamed back into my life and brought that center of peace that has sustained me.

It has had me reflecting on everything that has happened today and several things have occurred to me. First of all, just because you cannot see or feel God working does not mean that he is not there. A reminder that He is always working on our behalf. Secondly, the reminder that emotions do not always tell us the truth. Sometimes they reflect what is happening physically .... Sometimes frankly, they are just skewed. And lastly, the light is always there. Waiting to dispel the darkness, I just have to take a step of faith into the light.

So tonight, I am taking a grateful step into the light ready to embrace what is ahead.

Just Connie

Breathing

I used to take my breathing for granted. You don't even think about telling your body to breathe in ... Breathe out. It just does it automatically. Days like today, remind me that breathing is a wonderful thing and can be an agonizing thing.

My lung function has been dropping and I find myself breathing fast and shallow, just trying to draw air in somehow, someway. It especially frustrates me because with the amount of steroids I am on there should not even be a blip in my breathing. I have no idea what is causing this downturn in my breathing, but I know that my chest hurts and I am struggling to do simple things.

I went to drill tonight at the Fire Station. Typically on Wednesdays we meet together and work on skill development. I went tonight but I sat in a chair and watched. I knew I didn't have it in me to put on 30+ pounds of gear and even walk across the room. Not when I was struggling to breath just sitting in a chair. I find that incredibly frustrating.

After drill I headed to yoga class where I spent most of my time laying of the mat in various positions trying to find a position that I could breathe in. After class my family doctor who is my yoga instructor talked to me about perhaps pushing things too hard, being stubborn and that he had counted my respirations and it was at dangerous levels. He is getting to know me all too well.

So I have instructions to bring my nebulizer to class in the morning and use it before I start. I will try it. I will try anything that keeps me out of the hospital at this point. And perhaps, when I get up in a couple of hours I will be breathing easier.

Praying for it .... So ready for better ...

Just Connie

The Journey Begins

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Things Are Changing

I have been in a whirlwind of tests and doctors visits. In and out of the ER for dehydration and high blood sugar and feeling ... Well not very good. I have known over the past 6 months that I have been getting worse but sometimes it is hard to really see where you are because you are struggling so hard to just keep going.

I had a wake up call in the form of my new pulmunologist last week. After struggling for 5 months with the OHSU pulmunologist and realizing that the new treatment plan was actually making me worse, my family doctor and I began to gather some referrals. He thought to ask one of his drug reps, "If you had a critically ill family member that needed a pulmunologist, who would you want them to see?" He did not even hesitate, he said, "I would send him to see this Dr because the man is brilliant."

So last week I headed to see the  new pulmunologist with a bit of fear and trembling and a lot of exhaustion. I was taken first for a chest X-ray, then run through a battery of breathing tests, lots of paperwork and questioning and then sent to wait in the exam room. After I had waited a while a man rushed in with his arms full of charts, looked me in the eye and said, "what are they f___ing thinking?" As I looked at him in confusion trying to figure out the context, he said, "why aren't you in treatment?" Oooh, it all began to fall into place.

It seems he had all of my records and was carefully reading through my test and lab reports and came across my immune panels. After questioning me a while he went back out with all my charts. I could hear him calling Dr's offices, asking questions and trying to get a handle on what had been happening. After a very long interval, he came back in and sat down, looked me in the eye and said, "you are very sick, frankly you are dying. You have to get back on treatment. Any other care we give you is just palliative if you do not address the elephant in the room."

As I sat and listened to him, I can remember thinking, I really appreciate his bluntness. I was amazed at how clear and decisive he was and that frankly I think the man is brilliant as he continued to put all the puzzle pieces together. Before I left, he had referred me to a new immunologist, had a very sensible course of treatment, ran new immune panels so the new immunologist would have what he needed to make a decision,  wanted to hear from the other doctors and pointed out that he believes that it is not a single issue but a multi level issue with my immune disease at the center.

So tomorrow I meet with the immunologist and hopefully develop a treatment plan. And I have to say that given everything I have been told, treatment does not sound quite so bad.

I just want to live my life fully, with grace, with humor and with courage. I believe that the best is yet to come.

Just Connie

Alien Landscape

By nature and by personal choice I am normally optimistic and positive. I love life and enjoy people. But I find myself swirling in a maelstrom of emotions right  now.  It is not a comfortable feeling and I feel like I have been deposited on another planet. Here I sit looking at a very strange and alien landscape.

So what do you do when you find that you are in a foriegn and unwanted place? I could moan and groan and complain ... But that really goes against everything that I am. I could go to bed and pull the covers over my head ... But somehow I do not think that is going to help in the long run. I could take a pill or take a drink that would deaden the things I am feeling .... But yet I deeply believe there is value in feeling the feelings.

I think that everyone comes to these places where we find ourselves broken, hurting and looking for answers. So what is the answer? I have a feeling that there is not a simple one. I think it is choosing to take a step in the dark, believing that the light is there. That does not mean that the hurt goes away, it does not mean that I will not be frightened it just means that I choose faith.

And anytime that I choose faith, the dark does not win.

A simple step of faith .....

Just Connie

Broken

Sometimes I have to wonder why I am trying so hard to keep breathing? It is an unrelenting, exhausting battle that never seems to let up. And I have to wonder why? What am I fighting for? I am not fighting to be here for my spouse ... I am all alone. I am not fighting to be here for my children, they are busy with lives of their own that does not include me. Why, then do I fight for health? For what gain? For what legacy?

I have always said I want my life to make a difference. But how do you guage whether you are truly making a difference? What measuring stick do you use and what do you measure? Is it by family relationships? Is it by the amount of people served? How do you know if you are truly doing what God has asked you to do?

Tonight my heart hurts, rejection cuts deeply and it is hard to see past that hurt. It makes me question everything I am and everything I do.

I think it is time to seek God's heart ..... Because tonight my heart is broken.

Just Connie

Projects

I have a week of leave left and still too many projects left on my list. It has not helped to have my lung function so low. That means that I get tired and short of breath very quickly. I have most of the guest room taped off so I can paint tomorrow afternoon. Though since I got another steroid shot today I might be getting up during the night to paint. We will see how it goes.

I am hoping to begin on the deck by Friday. But I also start my motorcycle endorsement class on Friday and it goes through Sunday. So I might be running out of time. But I am going to make an effort to start cleaning the deck and getting it ready to repair and seal. Then I need to do the digging for the patio. There is just a lot to get done yet.

My car goes into the shop on Thursday and that will complicate things but at least it is a local shop. So I can probably walk home or catch a ride since I will be dragging my Turnouts and my Wildland gear with me. It just reminds me that not only is the clock ticking ... My pocketbook is emptying as well. What a process this has been!

I am trying hard to not get discouraged by how much is left and how little help has been available. People are very busy and I do understand they have things to get done as well. So I will keep plugging away and get as much done as I can. Many of the projects I can keep working on after I get back to work.

So pray for me to be productive, for my lungs to cooperate and to stay positive. It will be so nice to get some of this done before treatment begins.

Just Connie

Nightmares

I sometimes struggle with nightmares. Sometimes I can tell that I am processing things that are currently going on in my life and sometimes I can tell that I am processing old trauma and experiences. The past week I have been having nightmares around a recurrent theme.

I am not sure why I am processing these old experiences now. Nothing has happened that has brought it to the forefront of my mind, but there it is. Night after night I awake in a panic because someone that I am frightened of has come back to get me. Night after night I am experiencing this same person in different scenarios, unexpectedly showing up. The sense of panic and fear that I feel is so real that when I wake up I am unable to go back to sleep again. A couple of times I have even sat up in bed listening .... To see if there is something .... Or someone out there in the dark.

I can not figure out just what has triggered these recurrent nightmares right now. Is it time to drag those experiences out and to look at them again? Is it a warning to be prepared? Is it a call to pray for the person I am frightened of? (Which I am doing) I have to admit that I do not know. But I am praying about it.

I think it might also be time to contact those that can tell me if this person is doing well and still half a country away from my location. So today I am seeking .... Information and and peaceful sleep. And I am thinking that I hear nap time calling me.

Yep most definitely ...

Just Connie

Good to Serve

I had just curled up on my bed,meeting ready to take a nap. (This sabbatical I am on has given me napping opportunities). And that is when my Fire Department pager went off. Scanning it, I saw it was a mental health emergency.  I thought, well if they need me they will call.

It was just as I was drifting off to sleep, that my phone rang. On the other end was one of our paramedics. As he quickly explained the situation he asked me what they should do? They had a young man who would not communicate and would not get in the back of the ambulance. He had a long history of mental illness and had taken meds in years. His mother was frantic to get him help and was worried about the family safety.

Since he was a legal adult and his parents did not have medical power of attorney, I explained they could not force him in the ambulance if he was not an imminent danger to himself or others. I heard the sigh, as the paramedic struggled to figure out what to do. Finally he said, "Can you come?

So I jumped in the car and headed to the scene. Upon arrival I found the young man standing in the full sun at the back of the ambulance. As I introduced myself I saw with relief that his eyes were tracking me. I saw with dismay how tense he was and how nervous we were making him. Telling people to move back, I began to softly talk to him. Each time I asked him if he would allow us to take him to the ambulance he shook his head.

I told him that I could see I was making him nervous so I would move back to the porch. In a few minutes he followed me there, but still refused transport or to allow us to take his vitals. I went in the house to explain to his mother that we could not force him. As her eyes filled with tears, I felt my own eyes tear up. I know first hand how frightening it is to watch a lived one slip away into their mental illness. I know the fear of living with the danger and the confusion with very few answers. I finally told her that I would make one more try, but then we would have to leave.

Walking back out to the porch, I gently began to question him about what he was feeling and experiencing. With amazement, I heard him say in a whisper, "I don't like it". "Let us help you then. Won't you come to the ambulance with me?"  And with relief I saw him nod his head. So I walked to the back of the ambulance, climbed in and held my hand out to him. As he slowly put his hand in mine, I was throwing up prayers of gratitude as I settled him onto the gurney.

And as we took the 20 minute drive to the hospital he began to speak to me. At the hospital as we transferred him into the examining room, I gently laid my hand on his arm and asked him if I could pray with him before I left. After prayer, I told him that I would be praying for him and explained that I would be leaving.

As I climbed back into the ambulance, I was filled with a strong sense that I was doing just what God had created me to do. There is real joy in knowing you are where a God wants you to be doing the things that he is calling us to do. Even when it is hard, even when it is inconvenient, even when it makes me miss my nap. I am so thankful for the opportunities I have been given here to serve. I am being stretched in new ways, in wonderful and unexpected ways.

Besides that I was given another gift on the ride back to the station when one of the paramedics turned to me and said, "Hey, the Chaplain did more than I did on this call". Laughing at his chagrin, I said, "Yeah, but you get the joy of finishing the chart!" I am surprised he refrained from throw something at me. I am lucky he is so nice!

It is good to serve and it is even better to serve with those who are a joy to work with.

Just Connie

God's Goodness

The text came as I was getting ready to lay down for a nap. I was tired, overwhelmed by everything that was on my to do list and so ready to lay my aching head down. I had more projects than I had money to complete the tasks. I laid there and was so tempted to ignore it until after my nap. I scanned it quickly and sighed. Someone needed to see me on an urgent matter right away. If it had been anyone else but this couple, I would have deflected them for a couple of hours. But I got up and actually put shoes on and waited for their arrival.

Giving them both a hug I tried to gauge where they were emotionally. They seemed happy and relaxed and joked with me as I brought them into the house. Sitting down they told me they had something for me and I could not say no. Experience has taught me to be wary, "Is it alive?" I asked? When they assured me it wasn't, I grudgingly said okay. At that point they handed me an envelope. Opening the flap I saw a wad of cash. Gasping, I tried to hand it back to them. "No, God told us to do this and we are being obedient." I sat there and looked at that envelope as the tears welled up in my eyes. "It is too much ..." But they again assured me that God very specifically told them to do this.

With amazement, I explained I had not known how I was going to buy paint to paint the house or the materials to repair the deck and lay the patio. I didn't know, but God was already providing. As we said our goodbyes, I was stricken by their generosity and by their obedience to what God was calling them to do.

And it was just two days later as I was standing at Les Schwab hearing the stunning news that the funny noise in my car was bad brakes, calipers and rotors. As they quoted the price for repairs, I knew I could pay it. Instead of standing there and crying because I did not have the money to repair it, I took a deep breath and said, "Get er done". Once again God provided, before I even knew I was going to be faced with the repair. As I waited for the car to be finished, I calculated how badly the repair was going to effect the house repairs. Sighing, I decided I would prioritize things and work till the money was gone.

Two days later I was handed a check by a local businessman to help offset the cost of my car repair. After I got done crying, I realized that it looked like I was going to be able to pay for everything on my to do list after all.

God's goodness never ends. Not because I deserve it, because I don't. He gives and teaches others the joy of giving. And is teaching me the humility and joy of receiving.

God us good .... All the time ...

Just Connie

Finding My Bliss

One of the joys I have in life is my work with the Fire Department. In so many ways it keeps me fresh and gives me joy. One of the things I have always enjoyed, is being part of drills. Not only do I get to work alongside people I like and respect, but I am learning things that are highly unusual for a  woman my age. I am also getting to know crew members in a whole new way.

Knowing how good it has been for me, I was rather taken aback yesterday as I was conducting interviews at the Fire Department. We are getting ready to hire a new Community Paramedic. As we interviewed one man we asked about his fire skills and he made the comment that at his age he didn't really want to go into burning buildings. I looked down at his resume and quickly calculated. The man was 9 years younger than I was! It was all I could do to not laugh. But I schooled my face into a professional demeanor and got through the interview. As we discussed the merits of the candidate, I brought up his statement and we all laughed as I pointed out that I was older by far and I was training with the crews.

It got me thinking about our perspective in life. I am always excited to learn new things and look for the experiences that will keep me young. I felt in many ways that this man had decided that he was old and needed to do things that were appropriate for his advanced age. I rather think that would be a joyless way to live. And thinking back he did not smile much during his interview.

I want to live fully, I want to learn, I want to run towards the burning houses. I want to rappel off buildings and get certified for water rescue. All of the things I have been filling my life with. I think I would rather live my life and have it filled with joy, than to be safe and surrounded by the mundane.

But that is just me, and everyone has to find their own path and their own bliss. Who knew that mine would be found as I jumped off the edge of a 4 story structure?

Just Connie

Time

It has become apparent that I have lot a lot of things "that have slid" around the house. There are all kinds of reasons, with one being that I have been sick much of the time and just did not have the energy to face it. The other primary reason is because I am never home to do the work that needs to be done. So little by little things piled up. My fence needs repairing, my garden space is overgrown and needs to be cleaned out. My deck stairs rotted out and I need to dig the soil out so they do not rot out again. The trim on the house needs to be scraped and painted. I have a roof leak in the carport and the roof needs to be treated for moss.The flower beds look like a jungle and frankly from the outside the house looks abandoned. And that is just the outside. I have several rooms inside that desperately need to be painted. I need to finish sorting and putting away my sister's things. And I have to shovel out the room my son used while he lived with me.

All of these things have been weighing on my mind as I contemplate the upcoming treatment. I have some things that have to be done while I am feeling well enough. It dawned on me several days ago that I need to take several weeks off and get at least some of these projects done. I would also like to do some camping, hiking and paddleboarding done as well. Especially the camping which is a lot more problematic while I am on treatment. I would also like to go up and se my daughter and grandsons. All of that requires ... time.

So I called my superintendent and told him that I need to take some time off before I begin treatments again. He asked me to call a board meeting and is planning on Skyping in with us for the meeting. He said he had some ideas but did not specify what he was thinking. I have to admit that it makes me a bit nervous. It took me a while to figure out what was making me nervous and I realized that I have had this nagging feeling that at some point the church and/or the Conference will get fed up with my illness and replace me. My rational mind says  that won't happen but I have to admit that the underlying fear is still there.

So I will probably call this week and talk to him about my time off. For one thing I do not want to burn up all of my vacation  on what is only the 2nd month of my vacation cycle.  I will also lay out a priority list on what I need to do around the house and prepare to hit it hard with whatever amount of time I actually take off.

Lots to do with little time .... sigh ....

Just Connie