Unexpected Freedom

I opened my car door, slipped in and laid my head on the steering wheel and cried... and cried ... and cried. These were not tears of sorrow, these were tears of relief. I have to admit that I was very surprised by the depth of the relief I was feeling.

It all began an hour before when I raced to Salem to meet with my immunologist from the Conference I was at in Hillsborro. I knew that the immunologist and my other specialists had spoken and all of them had agreed to a joint treatment plan. I even knew that the treatment plan was to put me on a macrolide therapy which would both kill any lingering infections and would strengthen my lungs. What I did not know is when I would begin the gamma globulin treatment again. The gamma globulin that they said would save my life by providing the antibodies I so desperately need, for 11 months had made me dreadfully ill. It was all wrapped up by having a bad reaction to the new brand of gamma globulin they were trying in the hopes it would not make me so ill.  That reaction affected my lungs and I have been fighting to get back on top of things for 3 months. During the recovery time they had pulled me off treatment to allow my body to heal. But I had already had two back to back infections so there was concern over what my immune system was doing.

I was dreading hearing the start date of treatment in a way that really surprised me. I was relieved to hear that I could not do the macrolide therapy and the gamma globulin at the same time. "Ah! Reprieve!" was my first reaction as he told me that I would probably be on the macrolides for at least three months. Three more months of no treatment! And then he said, "I am not in a hurry to start up your treatments again. And I would like to apologize for how long you struggled with it before I took you off." I sat there with my mouth open and my eyes tearing up. My next thought was, "Which of my Drs squealed on me?" Totally unfair thought, but there it was. He went on to explain that most people just do not have any problems tolerating the treatment. I finally said, "You know when you say that, what I hear is, "You are a wimp and should do better". He shook his head and said, We will take another look in 6 months and see what your body and your immune system is doing.

I stumbled out of the office, down the stairs, out through the parking lot and into my car, which is where we started. I am still filled with a deep sense of relief. In many ways I feel like I have been given my life back. Life is so complicated on treatment and I was spending so much of my time sick and so very tired. I have been given at least 6 month of freedom. I am going to enjoy each and every moment.

And freedom feels pretty good!

Just Connie

Burning

Over the past few years when I have been so ill, I have worked very hard to find things that bring life and joy to me. Things like getting outside and letting God blow the cobwebs away. Another thing that has brought life and vitality to me has been my involvement with the fire department. What a joy to work with this incredibly talented and committed group of people. People who share my love of service and people who share my sense of adventure. I am coming to find that that is not very common place.

Last Saturday we had the opportunity to burn down a house for training. It will sound bizarre when I say, "It was soooo much fun!".  I am coming to believe that every firefighter has a strong inner pyromaniac within. I have to say it was exhausting, but  wonderful. I made it through without even a blip in my breathing. I did not even have to use my inhaler. So all of the precautions I used paid off.

I am grateful for the opportunities I am given and grateful ... well just grateful.

Just Connie

Pride

I tearfully looked at the pile of wires, cords and devices. I was defeated and I knew it. Since arriving home from the hospital 4 days earlier my internet had been down. Sporadically I would sit and try to puzzle it out, but it never seemed to heal itself, just because I told it to. The reality is that I had no real understanding of how things were hooked up and what should be going where.

Sitting there in miserable failure, I finally did what I should have done at the beginning. I picked up my phone and texted a techie friend and told him my dilemma. I asked if he could find the time in upcoming days to look at it or at least tell me where to start. He was there in a few hours and soon not only had me back connected, but was working on my dying tv problem as well.

I have to wonder why it is so hard to ask for that kind of help? I have actually had to do it three times this week. Once to ask to have my blood sugar checked, once because everyone of my kitchen flourescent lights had gone out. Thank you to my neighbor Phil for rescuing me from the dark. And then today as my broken Internet was fixed. I wonder if it is a type of false pride, that insists that I should be able to do it myself? Which then heaps coals of shame on my head when I cannot.

I think that the reality is that none of us can do it in our own. And for me being alone, being sick that is especially true. It is probably time to do a better job of laying pride aside and allow people to minister.

I have a feeling that is easier said than done ....

Just Connie

Not the Day I Expected

I drug myself out of bed, thinking "I am really ready to feel better". Tired, listless, low lung function all sapping me of my normal energy. I had been up all night and was watching a couple of symptoms that I knew might be telling me that the massive steroids I had been taking were effecting my blood sugar.

I headed to a short meeting at the Fire Hall, feeling worse and worse. I will go home and rest after the meeting I decided, just tough it through this. At the station I found myself getting shaky and unable to quench my thirst. Walking into the Community Paramedic Office, I asked her to run a blood sugar test. When I saw her shoulders stiffen as she read the results, I asked, "How bad?" When she said 490 I picked up the phone and called my doctors office. Their response was, "Go to the hospital now! And do not drive yourself."

Leaning on the door frame, I told Chief I was ducking out as the paramedic filled him in on my vitals. He took a look at me, looked at the paramedic and said, "Transport her." When I objected, he gave me that Chief look and said, "Shut up and get in the ambulance."

So in minutes I found myself in the back of the ambulance getting an IV and leads placed for the EKG. I cannot say enough for the care, humor and compassion that they treated me with as we headed to the hospital.

For the next five hours I was poked, prodded and tested. I was dehydrated, my blood sugar had raised to 530 and I was critically low on potassium. So lots of fluids, insulin and potassium were pumped in to stabilize me. The outcome was that I was sent home with a pile of instructions after 5 hours.

As I have reflected on the whole experience there are some things that am very grateful for. I am grateful for my friend who followed the ambulance and stayed with me every step of the way. Her humor and insights always make life better. I am also grateful for the expertise and wisdom of everyone who worked on me to patch me back together. I am even grateful for my Fire Chief who made a decision and made sure that I followed it.

I feel that I am blessed and fortunate. I am looking with anticipation for feeling better and expecting good things ahead.

Just Connie

Blessed and Encouraged

Breathe in ... Breathe out. It seems so easy. But for the last two months it has been so hard. After reacting badly to the new brand of gamma globulin I have struggled to get my lungs fully functional again. Over the past several weeks they have gotten worse and worse. Yesterday and today I met with Dr's who are working on getting me up and breathing again.

I have to admit to being tired. Emotionally and physically right now. Everything takes so much effort to do. So I am trying to be proactive, keep moving and getting more rest. However, that more rest thing has also been elusive because of the massive amounts of steroids I am on. But I am trying.

And I guess that is what it all comes to. Am I willing to just keep trying? Am I willing to allow it to be hard? Am I willing to embrace where I am? There is a lot of it that I do not like. But, there are also some amazing things blessing me as well. I have been incredibly blessed by the love and support of friends, families, churches and the community. The unexpected notes and visits just when I need some love and encouragement.

I have also been blessed by those who have stepped up to the plate to lighten my load and to help. Everywhere I turn I am reminded of God's grace and love. And I guess when you think about it that is not a bad place to be. Surrounded by love, grace and frienship. Blessed and encouraged ....

Yep, this is a good place to be.

Just Connie