The Journey Alone

I have learned a lot over the past years about living on my own and facing life on my own. Sometimes it comes easier than it does at other times. The past couple of weeks have been particularly difficult for many different reasons. But the outcome is that I feel very, very alone.

I realize that is my reality and that for the most part I need to embrace it and learn from it. But I have to admit that it has been painful in a way that I have not faced in many years. I am optimistic my nature and choice, but this feeling of aloneness is chipping away at me.

How much of that is because of the physical assault on my body? Well, a lot of it certainly could be. But it still is stilling the beat of joy and life that usually rings so strong in me.

So I will try to get extra rest, keep fighting for health and try to experience the things that give me life ..... Alone ... Sigh ...

Just Connie

Hospital Day 4

Finally improving which has been encouraging. It is a matter of how fast and I can see treatment problems looming before me as I try to juggle days and Dr's appts. Right now I am shooting for Wednesday and Saturday.  We will see if I actually get to go home tomorrow. 

The staff here has been incredibly kind and I am very thankful for them. From the respitory therapists to the nurses, CNAs and the Dr's have all been working to help get me back on my feet. It is a good feeling to be surrounded by kind people when you are sick.

I have also been blessed by visitors from the community, the church and family who have taken the time to come and see me. They have kept me laughing and brightened long days. 

I am continually reminded of how much attitude makes makes a difference to everyone around you including myself and my recovery. And to be compliant and submissive to my care providers. I do not always find that easy. But that is probably not a surprise to anyone.

I have found that not only here at the hospital all through this health crisis I have had to give up a lot of my freedoms. I find that I really struggle with that. My life has become so defined my medical needs and demands and I do not want my life to be about my illness.

So I will try to fight the things I can, submit to the things I should, listen to my Dr's and still try to live life abundantly.

That sounds doable ... Right?

Just Connie

Hospital Stay Day 2

It was a along night, but I hope I am making progress. The respitory therapist showed me my chest X-rays and that wa interesting and a bit depressing. There were some swirly occulions which is probably pneumonia and of course the atelectasis that has been showing up for the last few months. It was interesting to see and I am always glad when I get a chance to see the actual records.

I am getting two different IV antibiotics, steroids, cough meds, insulin ... Well it just keeps gong. I have not see a DR since yesterday morning so I am not sure what the game plan is yet. Of course hope springs eternal in my heart and I am hoping they will end me home today. I guess it will depend on whether they think they are making any headway on the infection. We will see.

I am always so impressed with how nice everyone is here. I always feel like I get very good care. I am so ready to be back living life fully. Though I am already trying to figure out how I am going to juggle two treatments this week. It will be challenging, but I will make it happen. I want to be better.

I keep asking the Dr's what I am doing wrong that I can change. They keep telling me, I am doing nothing wrong I need to just keep fighting and moving ahead. Some days the fighting is easier than others.

But it is still worth it. I grew up in s family that taught me to fight ... The catch phrase was ..walk it off. So I am walking it off.

Even in this hospital bed ....

Just Connie

Hospital Stay Day 1

I spent a very miserable night with very low lung function, a lot of coughing and struggling to draw breath. In the morning I texted my primary care to update him. He of course said what I did not want to hear. Go to the hospital. I argued the point but it did not change the outcome. So I packed a bag and had friends drop me off.

I was dumbfounded to give my name, get plunked in a wheelchair and taken into a room, with all the nurses saying, "Hi Connie" as I was wheeled by. I am spending way too much time in the hospital.  Before I knew it I had blood tests, blood cultures, X-rays and was being told I was staying. Once in a room, I was hooked up to the heart monitor, put on oxygen, regular breathing  treatments and had my legs wrapped.

Now the hospital is quieting down for the night. I have been given my first round of meds, including the dreaded lovnox shot in the abs. Soon they will come in with the next round of meds and I might get some rest.

The hospital is a world all its own. I'm am very thankful for the excellent care and kind staff here. It is an incredible blessing.

And yes, I did have to tell my family Dr that he was right ... I needed to come in.

Sigh ....

Just Connie

Feeling Worse

I woke up feeling worse. Short of breath, pounding headache and coughing, coughing, coughing. I walked into my Dr's office and truly expected to be told that I was doing okay and to get some rest. However, the reality was ... I was in respitory distress and needed to head to the hospital. And arguing was getting me nowhere. Not to mention the bucket of tears I was crying.

So I caught a ride to the hospital with one of my minister friends and began my 7 hours at the ER. I got a chest X-ray, an ekg, blood tests, blood cultures, fluids and lots of nice people to help. The final outcome is acute bronchitis/early pneumonia. So back on the antibiotics I have only been off of for a couple of weeks.

I have to admit that this one hit me hard. Both physically and emotionally. It came on very fast, in the midst of treatment and went critical before I even knew it was a real problem.  I feel like I have been hit by a truck and all I want to do is cry.

So tonight I lay here and cough and wheeze ... And cry ...

But tomorrow is a new day ....

Just Connie

Treatment a Day

Not one if my better treatment days. I showed up at the station for my pre meds after having been up coughing all night and they listened to me breathe and decided I needed a breathing treatment. So while I was waiting for treatment time, I had my vitals run and given a duo nebulizer treatment. When that was done it was time to hook up the needles and begin the gamma globulin treatment.

I no sooner got the pump hooked up and the drugs running when the chief contacted us and said he needed to talk to all of us together. We listened in stunned disbelief as he explained that the wife of one of our firefighters had unexpectedly and suddenly died. An amazing couple that all of us like and respect. This will be devastating for the whole station.

I quietly headed to bed trying to process everything and slept till lunch time. I got up, heated my lunch, checked in with the students to see how they were doing, took my next round of meds and went back to bed. This time when I woke up coughing I was also running a fever. So they did more breathing treatments and gave me Tylenol for the fever. Finally though they decided I could go home and now it is 7:30pm. I am exhausted, heartsick, feverish and tired of being sick.

And I have a feeling I have a whole lot of sick ahead of me yet .... Sigh

Just Connie

Busy

Busy day, I was at work by 7:15 and waded through my desk work and prepared for my 9:30 staff meeting. We had a great meeting but by the time it was done I was due to be at the Fire Hall to have my vitals taken and pick up this months meds which had arrived. Then it was time to head to Kiwanis for lunch.

Following the meeting I headed into McMinnville for my vision appt. everything checked out there, which was a relief after all the drugs that have been pouring into my body over the last 8 months. Then it was time to run errands. I needed a couple shirts, I needed all kinds of odds and ends. Not to mention the $200+ dollars for the vision check and contacts.

This has been an expensive week. Yesterday I spent over $600 on just some of my monthly meds. First of the year is pretty painful until my deductible is met.

But I will scrape by somehow ...

I pulled into the driveway about 6pm, had some dinner, put everything away. Unpacked my meds for this month and got them sorted out and ready for treatments. Now I am finally curled up in bed, trying to remember if I have forgotten anything for tomorrow which is another treatment day.

Sigh ... 4:45 is going to come early ....

Just Connie

Treatment Day

I hopped out of bed at 4:30am and jumped in the shower. I knew it would be my only chance to shower before my treatment. After my shower, I put my makeup on, laid out all the medications and medical supplies I would need and took the gamma globulin out of the fridge so it could come to room temperature.

By  then it was time for yoga class, so I headed over to the Molloy Farm for my early morning yoga. I always enjoy it and I think it is especially important on treatment days. I need to be up moving around and exercising as much as I can before the drugs kick in.

On my way back from yoga I alway call mom and dad and check to see how they are doing and to update them on me. There is always lots of laughing and silliness that lifts my heart and prepares me for the day.

Arriving home, I took the first of my pre meds, I cooked my breakfast, packed my lunch, changed my clothes, got all the electrolyte drinks I would need during treatment including diet 7 for the expected upset stomach. I packed everything in bags by the door as I waited for my ride to the fire station. I then took my next round of pre drugs, knowing that these would make me fuzzy within the hour, but would help with things like the  itching, inflammation and nausea. My ride arrived and we made the short hop to the fire station where I carried my lunch, books, pillow and so on to my sleep room and began to lay out the treatment drugs and needles that would be used in a few minutes.

At 9am we began the process of placing the needles in the back of my arm and anchoring them down. Needles hooked to lines, hooked to lines attached to the pump. When everything was set the pump is started and it begins to slowly push the gamma globulin through the tubes and into my body.

From there I head to my sleep room, where I do a little bit of reading, a bit of sleeping and get checked on a lot by the staff and paramedics. About an hour in, I usually take a migraine drug and in 2-2.5 hours the gamma globulin has finished running. By then it is time it take another round of oral drugs for nausea and itching and try to have some lunch.

After lunch it is usually time for a tordal shot to help with the migraine and go back and sleep for the rest of the afternoon. Around 5 they check on nope and see if I am stable enough to go home and sleep. So they bundle me up , take me home and send me to bed.

And now I am just doing a quick run down of a treatment day while I can still string a couple coherent thoughts together. But my body is screaming for bed!

Tomorrow is a new day, thankfully ... Because it is going to be busy!

Just Connie

Home at Last

Just got home from a 7 hour trip back home from the Pastor's Conference. It was such a good Conference. What a privilege to hear from our Bishops, get good training and to be with the Pastors from 4 states.

Besides the chance to hear from our Bishops, being with the pastors was probably one of my very favorite parts. I do not get much extended time to talk and share with my fellow pastors, so it is always a treat when we can get caught up with each other.

It was also good to have a couple of my ministerial students with us. I am looking forward to Tuesday's staff meeting when they will share what they learned with the rest of the staff.

I am very thankful for these times that are offered to us from the denomination and the local churches willingness to send us. It is a privilege that I do not take for granted.

I am feeling grateful, tired and that I will need some time to process everything I learned over the last few days.

Just Connie

Sick Lesson

The conference was going well and I was excited to hear from our Bishops. I settled myself into the auditorium in an all to familiar growing discomfort. I was getting sick to my stomach. I stuck it out till I knew it was almost too late and made a mad dash to my room where I spent the next three hours in sick misery. Frustrated, I just tried to wait it out realizing I had missed all three Bishops messages.

I finally headed back in time for the small group session, still a bit green around the edges. But I got better as the time went on, till I was finally feeling pretty good again.

I find these times of sudden, intense illness very frustrating. Some of it I know is caused by the gamma globulin treatment. Some of it is caused by something called gasteroparentisis. Where I am just not digesting the food I eat.  Whatever it is caused by, it is miserable and I hate it. Both from the time it steals from me and the discomfort and misery it brings.

But I do not want to be frustrated, this is something I cannot change. It is yet another of those things I need to accept, and just journey through. I guess a reminder that not all journeys are fun or enjoyable. But yet there are surely things for God to teach me on this journey too. I guess the question is, am I willing to learn? Am I willing to be open enough and humble enough to accept even the uncomfortable lessons?

I am willing to try .... Time will tell how successful I am....

Just Connie

Pastor's Conference

I packed up and stacked my suitcases by the door as I waited for the ride that would take me to the Pastor's Conference in Northern Washington. It was dark, stormy and pouring buckets of rain. When my ride pulled in we loaded things up and began the the long trip north.

As we traveled I monitored the rising flood waters at home and posted updates on the Fire Department Facebook page to keep the community up to date on what was happening. I am continually amazed at how much I can do from a distance with technology.

We arrived late afternoon at Warm Beach Campground and were soon checked in and resting. I am not sure how sitting in a vehicle for 7 hours can make you so tired, but it does. But by 6 we were ready to meet with friends and head to dinner. For the next 2 hours we talked and laughed and enjoyed spending time together. It is so rare to be able to spend extended time together and it makes it so much richer to be able to do that.

So now, I am curled up in bed, reflecting on a great day and looking forward to tomorrow.

This is going to be a good time together.

Just Connie

Washing Machine

The other morning my washing machine decided to empty itself all over the floor. Of course it did it while I was trying to get everything ready for treatment and get out the door. So instead of doing that I was bailing water out of the washer, mopping the floors like mad and  wringing out wet  towels. And dragging buckets and buckets of water outside to dump out.

Once I had gotten most of the disaster cleaned up I texted my neighbor man for ides or repairman suggestions. He said he would take a look while I was gone for treatment. When I staggered back home that night, the washer was out in the garage and I got a text that said, "it's dead, you need a new washer". Knowing my bank account, I certainly knew that was not going to happen. So I did what any drugged up person after treatment would do ... I cried and went to bed.

So for several days I have ignored the gaping hole where my washer belongs. It began to get harder as I have been preparing to leave town for a Conference. But I still managed to work around it. But today my mom called me to talk to me about them helping me buy a new one. I of course told them that they had no business buying me a washer. She promptly told me to shut up. On that happy note I said good bye because my neighbor man was at the door. I told him that mom and dad wanted to buy me a washer and that is when he told me they couldn't because they were too late. Because two people had already gone together and bought me a washer.

And that is when I started crying. I am overwhelmed and humbled that they would do that. What an incredible generous and loving thing to do. I guess they are installing it while I am gone to the Conference. There are no words to express my gratitude and surprise.

But I will try and I will keep on trying. I really do not. Deserve this ....

Just Connie

a Surprise

I woke up this morning groggy from yesterday's treatment. With a headache pounding over my eye. I looked out the window at the big snowflakes swirling outside and sighed. I was due to head to Portland for vocal chord therapy. Picking up my phone I texted my designated driver to make sure we were still a go.

An hour later found us on the road to Portland with a quick stop at my Dr's office for a tordal shot for my headache. Before I knew it we were there waiting to be called in so the therapist could begin the work on my very hoarse voice.

The therapy actually went very well. Well enough that she decided to work on my singing voice as well. She actually got some good solid tones without the cracking and patchiness that has plagued me this past year. I just about cried when I heard almost normal tones coming from my throat. I stood there and clapped my hands I was so excited.

I realize that there is not a magic fix, and there is a lot of hard work ahead of me. But this filled my heart with hope and joy today. I will be singing again. I have missed it so very much.

This goes a long way to battle the rest of the Ick I am facing. I am feeling pretty grateful.

Just Connie

Pokey Friends

I have a pokey friend. I have to say that I am pretty thankful for my pokey friend because she helped poke the treatment needles in me yesterday.

When my friends Cliff and Carolyn realized that I was going to have to do treatment on a Sunday afternoon, Super Bowl Sunday to be more specific, they came to the house and pucked me up with all of my drugs and supplies and brought me to their place.

Carolyn had gone through the training with the home health care nurse, so she was fully aware of what needed to be done. I had taken all. My pre meds and just before lunch, Carolyn set all my needles and I began the pump. By the time I finished an incredible lunch, I was was getting groggy and wrapped myself in a blanket and dozed the day away.

By the time the game was wrapping up, treatment was done. And Cliff bundled me up and took my very groggy self home.

I am so thankful for friends who will invite me into their lives and offer such meaningful help to me. It fills me with a sense of being loved and reminding me that I am not alone. And that is a pretty precious gift to give to me right now.

So tonight I am very grateful for pokey friends,who are willing to do the hard stuff with me.

Just Connie

Friends

I am blessed to have friends. Some friends I have had for decades, others for years and still others for months. All of them are precious to me.

This morning I met with a group of friends that meet for breakfast on Fridays. There is a lot of silliness and laughing and we always have a good time. I came away with a smile on my face as I got in the car and headed to the fire station to meet with yet more of my friends.

From there I headed back home to do some house cleaning, when friends dropped in to have me read their papers they were getting ready to turn in and helped me vacuum the house. Now that is friendship!

I put my feet up for an hour or so and then got ready to head to Salem to have dinner with a friend I used to work with at the Mission. I had a wonderful time with him and I am so glad that we are able carve out time together. I am always thankful for the time we spend together.

After dinner, I headed home to wait for yet another friend. A ministry friend who is serving as a missionary right now and that I do not get to see very often. She is speaking at the church on Sunday and her plane came into Portland tonight and she drove to Willamina to stay with me. So we will have a couple of days to get caught up and enjoy some time together.

Days like today remind me how important other people are in my life. I need them, their love, their support, their wisdom and the uniqueness of who they are. I believe that each of them are a gift from God.

I am feeling pretty blessed ....

And that is a great way to end the day.

Just Connie

Recovery Day

I drug myself out of bed today, feeling exhausted and headachy from yesterday's treatment. But I knew I had things to accomplish so I got dressed and drug myself to the office. I worked there about an hour and a half under my body was screaming at me ..., go home! So I made a run to the bank to make a deposit, stopped at the Dr's office to get a tordal shot for the headache and made my way home. Once there I fell into bed and slept and slept. The kind of deep sleep where I did not know if it was day or night when I woke up.

But eventually I got orientated, got up did a little light cleaning, made some lunch and went back to bed again. I have to admit that these recovery days are taking a toll on me. I have a lot to get done on my schedule and treatment and recovery days are taking a huge bite out of my week. I am trying to let it be what it is ... But I am finding frustrating nipping at my heels. I also know I am frustrated because my young function is dropping, most probably because the Dr had allowed me to try a step down on the prednisone. I so want it to work and I am so disappointed!

So physically, today was not one of my better days. But still it was a good day. God loves me, I have friends who love me and I believe there are good things ahead.

Life is good ....

Just Connie

Treatment Day

Treatment day. I reported to the Fire  Station at 8am to begin the first of my pre drugs. At 9am I took the second set of pre drugs and be gave preparing the syringes, medications, tnbings abs bandaids. By 10, everything was laid out and ready for the Community paramedic to set the needles. So for the next 15 minutes I sanitized and prepared the sites while she set the needles and anchored them with tape. Then the syringe is checked for blood and then put into the pump and started. For these smaller doses it takes about two hours to run. By then I am due for more medication nd I roll over and go to sleep for. A few more hours.

And that is pretty much how it goes. I wake up, get something to eat, take more meds and go back to sleep. By 6pm I drug myself downstrairs to trend the safety meet and see if I could clear some of the fuzziness out of my head. By 8pm I was feeling I could drive myself home. So I packed up and headed home.

Hope Puppy was ecstatic to see me and she helped me was up every step of the way so I could fall face down in bed. I think with this many drugs running through me, I am going to sleep well tonight. I am glad to have a few days break before the next treatment. I am hoping a Sunday afternoon. We will see since I have to be up at OHSU on Monday morning bright and early. It will be a very busy weekend.

But that is not a bad thing .... I just need some better lung function and energy,

Wonder if I could order it on AMAZON.

Just Connue