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