Ski Trip

Busy weekend! My friend and I headed cross country skiing Saturday. It was a beautiful day on the mountain, mild weather and bright sun, with great snow. I knew I was fighting fatigue since it was only two days after treatment, but I have to admit that I was pretty disappointed in my stamina. I found myself tiring quickly and getting very short of breath. I skied a loop of a mile or so and then went and sat at the lodge for a while, sending my friend to go and ski on her own for a while. Then I skied s loop of another  mile or so and went and rested again. I am very glad I went but so wish that I had a little more oomph for the day.

After skiing we headed back to McMinville and had dinner at one of our favorite restaurants. I was dismayed when dinner did not stay down and so blessed by the help of my friend. I waited a bit and then headed quickly back home. It was an uncomfortable trip that I was very thankful to have over with. I would really like to find a way to so be these miserable days I call my throw up days. Dr tells me it is a side effect of the high blood sugar. All I can say is that I do not like it!

However, with all of that, tomorrow is treatment and I know that it is another step towards healing and health. That is a very good thing, it is just at time I wish the process was easier.

Just Connie

First Treatment

At 8am I presented myself to the Fire Station and began my pre medications. At 9am one of the paramedics set all three needles for me and I stretched out in my sleep room to rest as the pump slowly pumped the gamma globulin in. When it had run through, we gently pulled all the needles out, plugged any holes and I rolled over and went back to sleep. For the next four hours I slep and only got up to eat a little and to check to see how the meds were wearing off.

I finally woke around 5, with no nausea, no migraine and feeling incredible blessed. It was by far the easiest treatment I have ever had. I think they have found the right blend of meds to get me through these treatments.

It makes me much more hopeful about the long term nature of the treatment. Now if I can just find a way to get it all on one day, instead of two .......


Hmmm .... I know ... Seems I am never satisfied. But what a difference it would make in my schedule!

Just Connie

Grateful

Pulled myself out of bed and got ready for the day. I knew that it was going to be a busy day with a lot to get done. I headed to the church and prepared for staff meeting, worked on some of the handouts for Thursday's Board meeting and put a call into my immunologist to talk about what had to be done before Thursday's treatment. The result of the phone call was that I would have to make an afternoon trip into Salem to see the Dr and try out one of the medicines to check for reactions. Which would mean at least two hours being monitored. I would also need to pick up a prescription from him while I was there.

Wrapping up the phone call, I headed into staff meeting with a great group of people. Where we scheduled, planned and prayed over the ministries at the church for the next 2 hours. From there I headed to the Kiwanis meeting where I spoke about the Community Kitchen and the needs that were facing us.

From there I ran down to the Fire Station to sign checks and make sure we were set for Thursday's scheduled treatment. Finishing at the station I headed into Salem to meet with the immunologist and be monitored with the new medication. For the next two hours or so, I fielded phone calls, arranged for the shipment of treatment medication and read. But at the end of the time I was pronounced safe enough to try one dose of the medication with treatment on Thursday, given a prescription to help with the nausea and the plan for the next couple of months.

Leaving the Dr's office I headed to Turner, where I had a Camps Board meeting. For the next two and a half hours, I looked at policy, procedure and budget, listened to reports and was completely blessed by the direction and management of our conference Camp.

So now it is 10pm and I am home from a 14 hour day. I find that I am grateful for so many things tonight. Grateful to be feeling better so that I can do a 14 hour day, grateful for my wonderful Dr's who are working so hard to  help me get better, grateful for the incredible people I work with across so many different groups.

And grateful is a pretty good way to end the day ...

Just Connie

Final Approval Part 2

Final insurance approval came in today. They will probably ship meds tomorrow, they will arrive Wednesday and treatment on Thursday. I am so relieved and will be so glad to get things laid out and ready for Thursday.

That means tomorrow I need to talk to the pulmunologist and get my pre-meds all laid out. That means I might need to take a trip into his office to retry the drug I had a reaction to at my last treatment. It will be worth it, if we can find a cocktail that works in terms of keeping some of the side effects from treatment down.

Then Wednesday the drugs will arrive and I will have to sort them all out and get them ready. On Thursday I will report to the fire hall to have my needles set and to have people to monitor me through the several hours of treatment.

Then Friday I will recover and Saturday I am skiing!

This will be a very full and busy week.... Deep breath .....

I am going to need it!

Just Connie

A Great Group of People

I spent the evening with a wonderful group of people. It was the 2017 West Valley Fire District Awards Banquet. It is so much fun to be with these people that I respect and love. There was lots of laughing, lots of teasing and the opportunity to show how much we appreciate a job well done.

We had opportunity to share stories, give awards and just relax with each other. We do not often get that kind of time together.  So we enjoy the time we do have.

Last year I was called out at the beginning of the banquet to a fatal cardiac arrest. Much to my stunned amazement I received the Chief's Award while I was gone. Chief still gives me a hard time for not showing up to receive the award. But that is the reality of first responder life. I get called out of a lot of things.

Tonight sent me home feeling good, with a smile on my face. Feeling proud of those I work with and grateful for the opportunity to be with them. What a great way to end the day.

Just Connie

Approval Part 1

I just spoke with my immunologist and approval has come in for 6 months of treatment. The approval has not made it back through the pharmaceutical company yet, possibly Monday. But the process is moving along and that is good.

I also was able to discuss some of the pretreatment plans and drugs. He also confirmed that he has ordered treatment in two sessions several days apart. That will take a huge hunk out of my week. But I am willing to try it out.

So things are moving ahead, some new things are being discussed to help mitigate treatment side effects and I will find out more next week.

Hurry up and wait .... sigh

Just Connie

Dr Appointment

"Hold your breath ........ Breathe, now relax." The x-ray technician walked me through yet another chest x-ray. Gathering my clothes and dressing, I made my way through the hospital back to my pulmunologist's office.

4 and a half hours later, I left the office with the news that I had pneumonia. Sigh .... I was hoping they would find my lungs much approved. However he did say that I am an anomaly, my lung function should be much worse based on my x-rays. The reality is that being an athlete all my life has really benefitted my lung health. My continued activity level I am sure has benefitted my lungs.

So now, I am back on yet another antibiotic to add to my drug pile. Praying that this go around will kill thus current bug dead. This has been a particularly long infection cycle. But it really highlights the need to be back on treatment. I need antibodies to fight infection.

I guess the good news in all of this, is they found the pneumonia before I was feeling critically sick. That is a positive. It also explains why I have been sooooo tired. It is good to have a reason.

So I will rest, take my medication and keep trying to prepare for treatment. Just another step forward ....

Just Connie

Living Life

Well I still do not have insurance approval, though I am hoping that it comes in today. However, I did find out the current treatment plan which has taken some of the wind of  my sails. The doctor right now wants me to split treatment up into two sessions. One that I infuse 4 grams and then a second session that I infuse 3 grams. I know that he is hoping this will mitigate some of the side effects I have with treatment. However what I have experienced so far is that will means not only two treatment days when I am down and in bed. But I will have 2-3 additional recovery days. So instead of being really sick for 2 days, I will be kind of sick for 4 days.

I will comply and try it out, but I think I will have a miserable, time consuming, schedule destroying month ahead of me when treatment begins again. And I am trying really hard to not complain. Because I am thankful for treatment, but the reality is that I still have a job to do, I still have the desire to live life. I keep trying to remind myself that this part of it is not forever. This is early days of treatment yet and the doctor is still experimenting.

But I have to admit that I have this deep desire in my heart that my life is not centered around my illness. I want to be in vital ministry. I want to continue to learn new things. I want to hike, ski, backpack and paddle board. I want to grow. But that gets so difficult in the midst of treatments, Drs, hospitals and illness.

But I am going to try ... I want to live life and I want to live it abundantly!

Just Connie

Alone

One of the harsh realities of life is that I am alone. I sleep alone, I go to work alone, I come home alone, I go to the Dr alone, I get bad news alone .... Well you get the idea. Over the past 8 years I have adjusted and gotten used to it for the most part. I have a great family who cares about me, I have friends who care and want to know what is going on and how they can help.

However, today I am finding it to be one of those days when being alone is rubbing raw. Today I am tired of being alone, tired of dealing with life by myself, tired of being sick by myself, tired of getting bad news by myself ... tired of being alone.

But the reality is that I am alone. I have chosen to embrace that, learn from it and grow stronger. I have learned to depend on God in new and deeper ways because of it. I have purposefully deepened friendships and my support networks. All of that has grown out of being alone. I recognize that and I am thankful for that.

But today ... Today the aloneness is hurting. I know it won't last, tomorrow will be better. But still there is today. I am thinking it is a good afternoon to cuddle with Hope Puppy in front of the fire. It is impossible to be lonely and sad with a lap full of border collie.

Just Connie

Life is Busy

I popped out of bed at 5 this morning ... well I crawled out of bed at 5 because it had been an up and down night thanks to the massive steroids I am on. But I did get out of bed and head to yoga class which is always a great start to my day. Afterwards I headed home, cleaned up had breakfast, called one of my ministerial students (woke them up) and headed to the auto shop in a nearby community to have my car looked at.

Having them meet me at the Auto Shop and then drop me off at the church so I could work on my sermon was my plan for the day. It was only a couple of hours into my study day when dispatch called and sent me to the scene of a cardiac arrest. And there I sat at the church with no car ... So I called the station and had them pick me up so I could run to the station and get a rig to take to the scene. So for the next couple of hours I counseled and sorrowed with some extremely nice people. I helped prepare the deceased for the family to spend some time with him before the funeral home arrived and then finally headed back towards the church.

By the time I got back my car was ready so I rustled up a ride back to the Auto Shop and picked up my car ... sigh .. I have some work to get done on it. Picked up some lunch and headed back to the church to eat lunch and work on my sermon. On the way back (I drive with a blue tooth ear piece) I fielded a couple of calls from my Dr's office about my blood test results. They were not as bad as they have been, but not as good as I want. And I might need to increase some medication. We will see.

For the rest of the day I will wrap up the sermon, Sunday morning service and get everything sent to the appropriate people and then head home. And .... home means I need to get a couple of more Christmas boxes packed up to put away. It is so much more fun going up, than coming down.

Life is busy, but life is good and it feels great to be breathing without extreme difficulty.

Just Connie

Good Stuff

I went cross country skiing today. First time of the season. It was looking kind of iffy for a while, first because,of my health and then because of the weather. But today was beautiful. A gorgeous bright, very cold day.

We went to a Nordic ski center that I had never been to. There was an incredible view of Mt Hood and  wonderful trails. I have to admit that I got short of breath, my chest got tight and hurt, I had no stamina and I had to stop often .... But I had a wonderful time.

I am very committed to getting out and doing the things that give me life. And that means that I will not lay around and wait to get well. If the Dr's allow it, if I am upright and breathing I am headed to the slopes in the winter, the trails in the fall, spring and summer and of course the lakes and rivers in the summer. I believe that being active has been one of the things that has actually kept me from being a lot worse.

So in two weeks I have plans to hit the slopes again. If for some reason the snow is bad, we will hit the hiking trail. I can hardly wait to see what the next adventure will bring.

This is such good stuff!

Just Connie

Frustrated

Frustrated! I found out Tuesday that I had to be referred to a new pharmaceutical company to be in network with the new insurance. Today I found out that the company they referred me to does not do gamma globulin and had never heard of me. The reality was they had referred me to the wrong company.

Soooo, today everything begins all over again. New Dr's orders, new insurance approval ... Everything. I am probably several weeks out from beginning treatment again. I am glad that I am in an upswing right now. I will do my best to wait patiently and trust that it will all work out.

Peace, and patience ....

This should be easy ..... right?

Just Connie

Long, Busy Day

I got up at my normal 5am time to head to my yoga class only to realize that my house was 50 degrees .. The pellet stove was not on. I quickly texted my yoga teacher and began the process of figuring out if this was something I could fix. 30 minutes later, the stove was running, I was covered in soot and  headed to the showers.

Grabbing a quick breakfast, I headed to the office for a scheduled meeting with one of my committee heads. After a great meeting I headed to the appointment with my family doctor to talk about these miserable days of throwing up I have been having that usually dump me in the hospital. The good news is that he thinks he knows what is happening. The bad news is that it is tied into the increase in steroids that always spike my blood sugar. More good news is that we might be able to mitigate it next time my steroids are raised.

From the doctors office I grabbed lunch from the deli and headed to a meeting with the other Chaplain. The meeting was a good start but we need to do it again soon. After the meeting I began tracking down our Fire Students to touch bases with them on the fatal call they were on last week. By the time I had finished up with the first couple, it was time for a meeting planning the upcoming Fire Banquet.

After that meeting, I made a pharmacy run, in the town that is just 5 miles away. I was able to get some paperwork turned in so the drug I needed could be ordered. I walked back to my car, started it ... And then watched in horror as it kept dying. It would not idle. I texted the Fire Chief and asked if he had any suggestions .... So he sent my friend Cliff to take a look. Who was actually able to  get it started and headed back to the Fire Station. Upon my arrival there I made a service appt at the auto shop for Monday. Sigh ...

Finishing that I ran to the gas station for deli food for dinner because I had just a little time before my Fire Board meeting. Finishing my dinner I found time to talk with another one of our students before I headed in for the meeting.

As the meeting was finishing up, I got a text from my doctor offering me a massage to help with all the muscle spasms from the dehydration. So after the meeting I drive through the snow and the ice and met him for a massage. It was an incredible way to end a very long day.

Now I am home, relaxed and headed to bed ....

So good to have some energy again.

Just Connie

Uncooperative Body

I have complained before that my body does not always cooperate and do what I expect or want it to do. Today was one of those days for me. I woke up feeling fairly well and got ready for the Chamber of Commerce meeting in spite of the 6 inches of snow. I was doing my normal taking minutes stuff when I began getting sick. Soon I was dashing to the restroom to rid myself of the little breakfast I had eaten. Somehow finishing the meeting without publically humiliating myself I drove myself home and put myself to bed as I tried to stay hydrated. I texted my doctor to give him a heads up I was throwing up again, who texted me back that I knew the drill ... I needed to go to the ER if it did not stop soon.

So for the rest of the day I fought nausea and tried to keep myself hydrated in spite of what my body was doing. When my doctor texted me later to check on me, I had actually stopped throwing up but was somewhat dehydrated. I told him I was pounding down the sugar free Gatorade and working hard on rehydrating ... So I was able to skip a trip to the ER for hydration.

But why oh why ... Am I struggling with this on non treatment days? 4 days after treatment? They say it is a systemic reaction .... But I really do not like getting hit with this so suddenly out of the blue. It stole a whole day from me, yet again ...and narrowly missed sending me to the hospital again.

All I can say is argggggghhhhhhhh!

Just Connie

Still Waiting

Still waiting on insurance approval for my gamma globulin treatment with the new insurance. I am beginning to be worried about the lag in treatment that looks like is coming. Last week I only had 2 grams of medication to take instead of the prescribed 7 grams I should have been taking. And I still have heard nothing this week.

So today I am on four different antibiotics, but my lung function is coming back up and that is a good thing. I was also able to step down from 60 mg of steroids to the 40 mg that I usually take. That is also a good thing and my body will appreciate it. Because it has so many side effects when I have to step it up even higher such as fluid retention, high blood sugar and the ever present Thrush.

It is good to be feeling better and I am hoping to hold on to this so I can go cross country skiing this weekend. It will be the first time this year and I m really looking forward to getting out into nature. I have missed a lot of hiking and adventuring this fall. And the reality is that it really breathes life into me when I am able to get out.

So I will keep plugging away and trying to get the approval and the medications sent. I will try to keep my trip scheduled for this Saturday and I will keep working on staying moving and healthy. That is quite a bit and I think will probably keep me busy.

Which is good ... busy ... keeps me out of trouble right? .... Probably not ....

Just Connie

Unexpected Blessing

I am curled up on the couch watching an old Doris Day movie when I normally should be in church. The predicted snow and ice storm came in with a vengeance and we are all iced in this morning. Which means that in the first time in over 35  years of ministry I cancelled a Sunday morning service.

So I am watching the movie, enjoying some unexpected down time, when I am not feeling too bad. I am hoping to get my Christmas decorations taken down today with this unexpected time bonus.

I have to admit that it is a beautiful frosty world out there. I filled the bird feeders and they are filled with birds of all kinds. I am enjoying watching them as they fight for position.

I am thinking that today is one of those unexpected blessings that come along. Recognizing it is one thing. Utilizing it will be a whole other thing.

Let's see how it goes ....

Just Connie

A Mixed Bag

Today was frustrating, challenging and a blessing in many ways.

It began with an early morning run to the pharmacy to pick up the antibiotic my pulmonologist had ordered for me for the lingering infection that is compromising my lungs again. I had also ordered additional anti nausea drugs because in the wisdom of my old insurance company they would only give me three days worth at a time. However, the antibiotic was unusual and only available in McMinnville, I had to be back at the house to meet the paramedic for my infusion in 15 minutes so there was no time to go and pick it up. Also the anti nausea drug was due for a Dr's okay, and I knew my Dr was out of the office all day. I stood there tearing up and feeling like an idiot and finally said, "Well this will be an interesting treatment today."

I headed back home and prepared for treatment. When the paramedic got there and we were chatting I shared  my medicine frustrations. And that is when she said, "I am in McMinnville today. I can pick up your antibiotic." I was blown away. And that is when my Dr's office called and said, "We sent in the prescription for your anti nausea drug and for a 30 day supply." Both of those were very unexpected blessings.

The treatment ran quickly today, with the usual migraine, nausea and exhaustion that seems to come with it. I went to bed and slept off what I could. And that is when people began to come with soup, stew and meds. It was amazing! I felt so loved and so blessed.

So tonight I am curled up in a blanket in front of the fire. My sermon is done and I am not feeling too bad except for the headache and lingering nausea. So tonight I rest, in the morning I will head to yoga class and do what I can.

Like most days, today was a mixed bag. But if you only focus on the frustrations you will never be able to embrace the blessings as they come. I am so thankful for people who love me and want to help. They give me wings and help me stay focused on the positive.

I just hope I am that kind of person for others ....

Just Connie

Another Step Forward

As I have journeyed through the last few years, I have learned a lot. I have learned that not every doctor is right for me. I have learned to not get discouraged by a lack of progress (mostly) and I have learned to partner with those who are invested in my well being.

Some of those partners are my family physician, my fellow fire department colleagues and of course my prayer support. It is not always easy to accept help or to be completely honest about the pronouns or what I am feeling and experiencing. But I have found that in a lack of information people fill in the blanks and not always with anything close to the truth. So I try to publically share updates and information on a regular basis.

Out of that public sharing has come some incredible help, because they knew of a need. Accepting help has been often challenging but good for me and good for the giver as well. When I stop to analyze it, I do not want to rob someone of the blessing of giving. I know the joy I get in helping people.

I am convinced that there is still a lot for me to learn as I journey through this. I believe there will be ups and downs and that I will not always enjoy the process of learning. But I also believe that there are good things  ahead. Things that will strengthen and improve me. Things that will continue to transform my heart and life.

Just another step forward....

Just Connie

Rough Treatment

Rough treatment day ... Even with the smaller amount of gamma globulin. The infusion went well, I was nauseous and had a migraine brewing and very, very tired. So pretty normal. I had something to eat and laid down to sleep it off. I woke up throwing up and coughing. My throat was increasingly tight and burning. I messaged our community paramedic that I was not doing well and something was not right. Soon after that I was wheezing and really struggling to get air.

Before I knew it the medics were there swarming me. Giving oxygen, getting the ephedrine ready and monitoring exactly what was happening. Over the next minutes I slowly got better and better. Finally we called my doctor and the paramedics gave all the right information and I was able to not be transported for a change.

My doctor will make a decision in the morning about tomorrow's treatment and I will hopefully try it again. Sigh ... I sure wish this was an easier process. But boy, oh boy, am I thankful for our paramedics.

Just Connie

Treatment Plans

Had a long talk with my immunologist today. He wants me to split my half dose into two doses to see if it cuts down on my symptoms during treatment. That means I will have treatment tomorrow and on Thursday. I am willing to try most anything to make this work.

He is also adding two new meds for the migraine I get during treatment. One is a pill I take at the hint of a headache and the other is a shot I give myself when it develops into a migraine. Both of them are non narcotic (which is what I ask for) and for vascular migraines. So I am expecting some relief.

I am still waiting for approval for treatment from my new insurance. I have no idea how long this will take. It is such a frustrating process. But for this week I have something to tide me over and new meds to help alleviate some of the ick.

So I think I am in a pretty good place .... Time will tell.

Just Connie

Real Life

Spent part of the day researching and studying Primary Immune Deficiency. I learned a lot but I think it will take a while to process everything I am learning. It is a lot to take in. Part of the process is finding the right places to get information because there is a lot of non information out there too.

But the outcome is that I feel like I know more about this disease and I think we are definitely on the right treatment path with the right doctors. It is possible that's we might have to change gamma globulin products or the method if I do not adjust well. But we are heading in the right direction.

The bottom line is that I do not want to live my life centered around my immune deficiency. I want my life to be about more than my illness. So the more I understand it and can treat it effectively, the less I should have to concentrate on it.  So more time and energy for real life.

And I am ready to embrace some real life again ...

Just Connie

Looking Ahead

I am feeling better and breathing better ... That is such a good feeling. I have more energy and feel more like myself than I have in months. It is amazing to be going back up the scale instead of down.

And that brings us to treatment this week ... I have no idea what is going to happen ... But I know that I have 4 grams of gamma globulin in reserve that I can use if I need to. But it makes a difference to be making decisions feeling better instead of worse.

So I will do what I can to get treatment approved by the new insurance and to get started again. But in the mean time I will jump back into ministry and enjoy every moment. This is a joy to me as I have grieved over the time I have lost to illness.

I can hardly wait to see what the week has in store ...

Just Connie