Holding On

On Friday, in addition to an EKG (to check for medication side effects), I had to visit the town vampire for lab work.

I was bummed to find out that my inflammation levels had increased since I last had them on Monday. But I am hoping that perhaps they had risen between the first one and when the antibiotics started to hit the infections, and that they were actually coming down.

I am feeling improvements on several fronts, but that inflammation number – measured by something called C-Reactive Protein (CRP) is very important to my doctor. It doesn’t tell the whole story, but lets him k ow if I am going in the right direction.

So as I continue to do my treatment regimen, I am praying that the improvements I am feeling are confirmed with another blood test in the next day or two. Hoping the doctor agrees, and that I my theory is confirmed.

I appreciate the prayers and love. It gives me strength, which I could really use right now. It is daunting to have such uncertainty and fearing where I will land.

Ode to a Marriage

Twenty-two years ago, when I was just 25, I married a man.

A man with whom I’ve grown into adulthood, shared laughter and tears, trudged up mountains, and got lost in valleys.

We have weathered storms and rainbows, and learned that you cannot have happiness without knowing pain.

We’ve walked through heaven and hell on earth, and found one another again whence inside the darkest places.

Twenty-two years ago, did we anticipate the journey we were about to take? Like all newlyweds, we prayed for the best. But nothing in life is perfect.

We have walked through the past quarter of a century, together, although sometimes, I feel like that’s somewhat of a miracle. We forced ourselves to communicate when it seemed impossible. When our paths would begin to diverge, through faith and a sense of commitment, one of us would reach for the other’s hard, pulling them close again.

I am no expert, and we don’t claim to have any of the answers, but I am proud of how we have been able to keep returning to the path when challenged.

And for that, I am truly thankful.

Measuring Progress?

It’s sometimes hard to measure progress when I am in the middle of treating an exacerbation.

There are at least a half dozen clinical symptoms that I can consider, but because changes happen gradually, I can’t always trust my own perspective. Am I coughing less? Bringing up less junk? Are my fevers improving? Are my lungs tolerating more activity? Am I feeling better?

The doctors rely heavily on my anecdotal evidence, but also maintain close control on my lab work. They want to know if my inflammation levels are better, if my lung function is improving, and if my vital signs are more aligned with my baseline. For example – my oxygen levels, blood pressure, temperature, etc.

In the meantime, I look for little clues that I am improving. How long does it take my lungs to recover after getting up for the restroom or get something to eat? How am handling stairs? How productive is the cough?

It’s always questions, questions, questions. Having to self-assess is hard when you so badly want to be better. There is nothing harder than making the call to say I’m not improving.

So, 2 ½ days into antibiotics, what is the story?

I am measuring small victories – fevers are down, coughing seems a bit less. I still need my oxygen if I do anything other than sitting. But I still feel very crummy. And it’s really hard to eat, but I am trying. I will be getting labs drawn in the next couple of days to see if things are going in the right direction.

Almost 4 hours later….

Blood work, chest xray, full CF checkup.

Inflammation levels shooting up again. Going on oral antibiotics for my MRSA…again.

Just want to get home, take a Tylenol for my fever, and pass out,but Ken’s got to go get my meds and I have to eat something.

Thankfully, my doctor seemed optimistic. I wish I could feel that way right now but…BLERGH!!!

CF Lands Here

I am going to start sharing my life with CF here on my blog instead of on Facebook. This way, if people are interested, they just need to check here. I apologize for the extra step, and I promise this is not because I want “followers”. I just don’t want to bring people down with constant bad news.

So here goes.

This weekend, just 12 days after leaving the hospital, my MRSA infection has flared up again. Fevers, lots of lung and sinus junk, dropping O2 levels…the whole gamut. Thankfully, I have a CF clinic appt scheduled for today as a followup to my hospitalization from 2 weeks ago.

I am very nervous because this infection is insidious. The doctors admitted to me in the hospital that they are stumped. But we hope that we might find some answers, and I will update you later on those.

And then…

I also have a new issue as a result of my treatments. My fabulous vest, which gives me independence to do my own airway clearance (chest physio therapy) by shaking me, has gradually effected my back and leg muscles to the point where I am in great discomfort.

Basically, because I’m short, my legs do not touch the floor of anything I said on, and I have a bony butt which doesn’t give me much support. As a result, all that shaking is causing back instability – now some of my muscles are now in pain all day every day, even overnight.

I am doing physical therapy on my own, using a STIM machine, moist compresses, and exercises to keep my legs and back stretched out. But every time I get relieved, the discomfort returns the moment I start doing another vest. I hope that the doctors can help me find a solution, because I have not found one that will help me at this point.

It would happen every once in a while, but started being constant before my hospitalization. Because I was told to continue doing high levels of vest therapy a day, 3 to 4 hours, that discomfort became constant.

So we have to work on a plan to get my airway clearance done without damaging anything else.

Thanks for reading, and I will update when I have any new information. Thank you for your support and love!

What is a Life

I recently shared a documentary about a young adult with Cystic Fibrosis – Claire Wineland. She lived out loud. She loved life in the way that most of us wish we could, for the moment, in the moment. She waxed poetically with the wisdom of an octogenarian who’d seen the world and experienced generations of changes.

A good friend who does not have CF thanked me for sharing the story, and I found myself telling her that Claire did more in her 21 years than I have done in my 47 here on earth. You see, I often worry that the things I did accomplish when I was younger have been forgotten, and feel that the very few things I’ve done since I had to medically retire don’t mean much of anything, to anyone.

I think it’s common for humans to compare themselves with one another. The people who “everyone knows” and who win awards and accolades for being brave enough to live life like Claire did – and boy, did she live.

But is that fair to compare any single human experience to that of another? Is it fair to ourselves, or even to our heroes? We each embark on different journeys the moment we’re born. We each have our own lists of strengths and areas to grow.

I’ve always said that I have no regrets – I have made the best choices with the information I had available at that time. Do I wish some things had turned out differently? OF COURSE!! But I was born exactly when I was supposed to be born, into my own set of experiences, into the life I was meant to live.

toni_1stgrd

Already living the Life I was meant to live.

I am always asking myself, am I doing enough? Do I give enough? Probably not, because 50% of the time, my body isn’t able to do much of the things I need to do to live. When you’re jut surviving, there’s not much to give to others. But I still try.

I can only hope that as we find more ways to improve different areas of my body’s dysfunctions, I can surpass simply surviving, really live, and maybe, someday, feel like I’m thriving.

But what that looks like is different for each of us, CF or not. We determine what life means, not our circumstances. Perhaps that’s what I got most from being able to witness just a few moments of Claire’s brief life.

Thank you, Claire.

Once again, if you missed it, Claire Wineland Documentary

Beauty in Sadness

This is the story of Claire Wineland, a 21-year old CF patient whose body finally gave in despite her living larger than most of us twice her age.

It’s been one year since you left us, Claire, and you are still teaching.