Saturday, April 29, 2017

The Open Road

Yesterday was a beautiful day, one of those rare days we get sometimes in April. I decided it would be a good time to get outside on my motorcycle. Of course the battery was dead, so I had to charge it and I needed gas and my neighbor came to my rescue. But eventually it started and stayed started. For 20 glorious minutes I rode up and down the hill and around the side streets, making sure that it was running well. Everything was going well so I pulled out onto Main Street and accelerated and .... It died. It died and would not start again.

Sighing I pushed it over to the curb and called my v handy neighbor Phil who I knew was at home working in his driveway. Unfortunately his phone was not with him, so the 9 phone calls I made and the 5 text messages were a complete waste of time. So then I called my other dependable mechanical genius, who was still at work in McMinnville. He said he would be back in town in about 45 minutes or so and if I had not found help he would swing by and see what he could do.

So for the next hour I sat on my bike by the side of the road, answered Facebook messages asking if I was still stranded and tried to look like I was not completely and absolutely clueless. (Which I was). About 50 minutes into my wait the man who owns the saw shop noticed I was sitting there and asked if I was broken down. When I introduced myself, he not only knew me, but knew where I lived! I love a small town! He was on his way out and could not stay to help, but it was about then that Ralph pulled up.

I was impressed when Ralph actually got it started, but sad when it would not stay started when you accelerated. Ralph finally decided he would need to tow me home. That was a lot of fun, I would be towed again in a heart beat. It only took me going around one corner that I learned to keep the tow rope taunt.

But I was finally deposited into my driveway where my neighbor Phil met us. The fellas think it might be a fuel filter, me I have no idea. I just know it is not running. So that will be one of my projects for the next week or two. Get my bike fixed! Because I need to be riding .. It is calling me!

Perhaps I will even learn a little something about fixing my bike in the meantime. I can actually charge it myself now ... Well after I borrow a charger I can. I have also been told I need a decent Phillips screw driver. That was after my neighbor had watched me taking the panel off with my Philips screw driver. But I guess I am learning and hopefully soon I will hit the open roads again.

I wonder how long this weather is going to last ...

Just Connie


Wednesday, April 19, 2017

Changes

One of the things that has become clear over the past 5 years, is that my mild asthma suddenly is totally out of control. They have tried me on medication after medication. With the immune deficiency fueling the storm wit every infection.

The have been trying to get me on this fancy new biologic last ditch asthma drug. It has been a long approval process because it is very specialized and very new. I found out today that I have been approved and referred to the Salem Hospital Onocology/hematology to administer it it once a month. It is very expensive and the drug company will help underwrite my co-pays for the first year. But I will have major charges for my time at the infusion center.

And to really give me some discomfort, my medical fund is down to $500. I have to admit that made me tear up because I had just gotten notice that I have several thousand dollars of charges coming in for the gamma globulin. I am working hard to stay in a state of peace, but in all honesty in my humanness I do not see how I can pay for the treatments that are saving my life.

But for now I am moving ahead with the treatment they tell me I need to live. I am praying and trying to see God's heart and wisdom and will strive to take it as it comes. God has not abandoned me and I know He is there. But I also know that in this broken sinful world things do not always work out as we would like them to.

So .... I am praying for peace, for wisdom and for obedience. That is a pretty tall order.

Just Connie

Thursday, April 13, 2017

Voice Therapy

I went to see my voice therapist today up at OHSU. It was an exciting appointment. She did some vocal warm ups with me and then asked me to sing a song. She was blown away at how much I had improved. It felt so good to be singing ... I could not stop smiling. My voice is not completely healed yet, but it is coming back.

She recorded my voice and then told me I have a very rare singing voice. She then showed me the digital printout of my voice. I have all of the overtones as I am singing. It is one of the things that gives me such a big powerful voice. Well, big and powerful except for the last couple of years. It has been more weak and squeaky.

She also confirmed my range and said she thought I would get my full vocal range back. She said she liked what my voice sounded like in the upper registers. Definitely a first soprano and she liked my voice! That was good to hear from a professional.

I am excited to get back to singing. She said I will still struggle with hoarseness for a while, until I get my muscles back. I just need to keep exercising.

I don't know when I have been so excited to exercise!

Just Connie

Tuesday, April 11, 2017

Treatment News

Well .... I heard from my immunologist yesterday about my latest blood work. The good news is that my antibody levels are moving ahead. I began somewhere in the 200's and the last test was in the 400's and this one was 635. However, it is not moving ahead fast enough. He explained that I really need to be over 800 which is still on the lower end of normal antibody range. And what that means is that he is increasing treatment. He is doing it is small incremental stages, so I do not think it will add much to my side effects yet. Next month we will do another step up.

I have to admit that I was disappointed. Not depressed, but disappointed. I was rather hoping the levels would be high enough that I could have a step down and go to one treatment a week. But this is my reality and I will embrace it to the best of my ability and continue to try to fit the treatments in. And live the abundant life I am given.

I am blessed by the doctors that I have, whoa re working so hard to get me strong and well. Drs who care about how I am handling the treatments, what side effects I am struggling with and who really want me to be well and happy.

I am blessed by my Drs and by my friends and family who faithfully stood beside me from the beginning. I am blessed and I know that, I feel it and it helps me find joy in the reality of ongoing treatments and illness.

There is joy and wonderful things ahead ...

Just Connie

Monday, April 10, 2017

Late Night Death Call

I got called by the Fire Hall last night to respond to an elderly lady who had died in her home during her nap. When people die at home there are protocols that must be followed by the county responding. In our case we have two different counties within the city limits of Willamina. The City has a contract with Yamhill Co for law enforcement protection. Yamhill Co is called once the paramedics have called that the patient was DOA.

Last night all the Yamhill Co Deputies were tied up on a domestic call on the other dude of the county. It was an hour and a half before the Yamhill deputy was cleared to come to us. But he got the ball rolling as I worked with the family on finding the funeral home that the deceased had made arrangements with. We were able to find the company and at least alert them they would be heading down to Willamina from Portland. It took another hour and a half for the deputy to gather information, contact the Polk County Meducal Examiner and be wrapping things up do we could call the funeral home to have them head this way.

By this time I had been on the scene 4 hours, both ambulance crews were pcalled out and then the deputy was called out as well. To their credit, all of them, checked to make sure I was comfortable being left on the scene with the family by myself. Which I was in this case. So they left me extra radios and told me to call if there was any problems.

So for the next hour I spent with the family as they spent time with their loved one before the Funeral Home came. We laughed and cried and they told me about her life. That is always precious times with families.

But finally I knew I needed to head home, and still the funeral home was not here. But the family seemed comfortable waiting on their own, and they had a great support with each other, so I hugged everyone and said goodbye.

As I have reflected on the evening, it reminds me that this is pastoral work on the front lines where people are broken and needy and we can share such abundant love with them as they walk the journey through sorrow. I am thankful for the opportunity to serve. It is an honor and a privilege.

And you never know what is happening next ...

Just Connie

Thursday, April 6, 2017

Friends and Family

I was able to spend some time with a childhood friend today. We went to grade school,and high school together. I had not seen he and his wife since our last class reunion. But he is facing a health crisis and they heard I was as well. So they made the time to come and have lunch with me today.

We had such a good time and we sat and talked for two hours and could have easily spent more time if we all did not have commitments to get back to. I felt so good and uplifted after seeing them and so grateful for the time we spent together.

It got me to wondering though, why we wait so long to make time for the people we want to see.mit was our mutual health crisises that pushed us to make time for each other while we could. So often in my family, it is funerals and hospitals that seem to draw us together.

I live several hours away from my family and I do not get to spend much time with them, especially on my current treatment schedule. But I am realizing that I miss a lot of what is going on with the family. I know this treatment schedule will not last forever, but for right now it is pretty tough to fit everything in.

So I am going to work hard at seeing the people who breathe life into me, who uplift me and make me smile. And that means my family too.

I think I might need more hours in the day ....

Just Connie

Sunday, April 2, 2017

A Good Place

Sometimes I am left with treatment side effects that are not pleasant. I often have a headache that lasts several days and the whole intestinal response has been .. Well unpleasant. But this week after the second treatment the side effects hung on and hung on. At 2am they hit again and I was up all night. On a Sundy morning as I am preparing for worship, it is not how I like to start the day. But it is the reality of being on treatment.

I was  trying to explain too friend today that I am working hard at taking it as it comes. Trying to not get stressed about side effects, because the reality is that the treatments are saving my life. I think the side effects at this point are probably worth it. I am feeling stronger and breathing better. My voice is actually coming back and I am not wheezing as much. I have even been able to try some small step downs with the steroids which lessens some of the unpleasant side effects of the steroids, such as dropping my blood sugar.

So really even with side effects I think things are going pretty well. Life is good and I believe there are even better things ahead.

And that is a good place to be ...

Just Connie