The Long and Winding (Yellow Brick) Road

I wonder what Dorothy imagined when she stepped onto the yellow brick road and began to move forward in her journey. I know that she could not have known what would lie ahead, not really. So many miles to cover, so many turns in the road, and so much that was unknown.

When I stepped onto my yellow brick road on Tuesday, I thought I had an idea of what might be around the first corner. I've been told that if there was no improvement in my condition in two months, that the next step would be a total knee replacement.

Well, I met the orthopedic surgeon yesterday...finally, someone who has some experience with osteonecrosis! And I left that appointment with a completely different picture of the road ahead of me. Wow!

According to this really good doctor who knows what he is talking about, a total knee replacement is NOT in my future. He says that this procedure is the total end-of-the-road step and I am nowhere near that point. (Plus, he said that I shouldn't even have a knee replacement, if I do have one, until I'm 65- and that's nine years away).

Apparently, my knee is really great except for this spot of dead bone (well, it's more than a spot). He explained that bone can revascularize- that the body has this way of, over time, growing new blood vessels in a damaged area and, in essence, bringing it back to life. This takes LOTS OF TIME (6-18 months...who knows?) and there is no guarantee that it will happen in my case, but he believes that it is the way to go for now. To continue down the "waiting" road and do everything possible to give the bone the chance to heal itself.

John and I are still processing this news, because it truly is a different picture. It means that I'll be on crutches for a long time and that this is the way life will be for many, many months. In about a month, prior to my next appointment with the surgeon, I am to begin very slight weight-bearing and then report to him what happens (pain, muscle spasms, OK, etc.) We are going to take this literally "one step at a time" and see what happens.

No surgery, no guarantees. Sounds like an invitation to trust, doesn't it?

Thank you for your continuing prayers, now for REVASCULARIZATION. That's the word! That's the prayer....

I'll let you know how we're doing with this after we have the weekend to absorb it.  :-)

Blessings,
Joanna

When The Tumbling Stops

Like Dorothy at the beginning of her journey, I have been caught up in a cyclone and I have been... tumbling. Someone said yesterday that it's like I'm in a clothesdryer...tumbling, tumbling, tumbling, always tumbling. That's exactly what it's felt like for many, many weeks now. I've been unable to get my feet under me (OK, unable to get my foot under me- no weight-bearing on the other one!).

This past weekend, John and I went away to the coast because we realized that, since this began, there hasn't really been time for us to be together alone and simply to talk about how we are doing, what this is like for each of us. Together we read the research articles on osteonecrosis and developed a list of questions for the orthopedic surgeon I will see tomorrow. And we were quiet, too, and enjoyed the beauty of creation.

Oh, that really helped! I started to feel like I was getting my bearings again.

And last night the Journey Center's board of directors and a couple of wonderful spouses gathered in our home to be together, to talk, to listen, to pray and to discern...where is God in this? What is the Spirit doing and saying in the midst of these unexepcted challenges and changes and the unfolding opportunities that continue to come to us at the Journey Center? What are the implications for the Journey Center's mission and how are we being invited to proceed?

By the end of the evening, I felt as if the tumbling had stopped. The prayers of so many have held me during the tumbling and now the presence, commitment and prayers of those who share the vision helped both John and I to find ourselves standing on solid ground again. Our gratitude is immense....

This morning, as I think of Oz, I realize that now I am ready to step onto the yellow brick road and engage in this adventure more fully. It is amazing how the prayers and love of companions (near and far) and the strength that comes as a gift from the Spirit make such a difference as the journey unfolds.

And I am grateful that this has happened before I see the surgeon tomorrow. How good it is to get my bearings for the Inward Journey regardless of what happens next on the Outward Journey. There will likely be more tumbling ahead, I know, and today I feel ready for whatever comes.

Thank you so much for your companionship and prayers...
Joanna

"Sometimes It Wasn't Very Nice, But Mostly It Was Beautiful"

This week, I've watched "The Wizard of Oz" twice and now I've got "Somewhere over the Rainbow", "If I Only Had a Brain", and "We're Off to See the Wizard" stuck in my head! :-)

What has stayed with me, more importantly, is something that Dorothy says towards the end of the film. Reflecting back on her experience, she says "Sometimes it wasn't very nice, but mostly it was beautiful." When I heard those words, I hit rewind so I could write them down. And I thought to myself, "That's what I want to say when I find myself further down the road on this journey of dealing with osteonecrosis! Sometimes it wasn't very nice, but mostly it was beautiful..."

Sometimes it ISN'T very nice. The months of pain before we knew what was wrong. Not being able to walk or hike or do the leg press at the gym (yes, I actually miss doing the leg press!). Watching the muscles in my leg atrophy. Hearing the news that this isn't a simple torn meniscus. Facing an uncertain future. Watching my wonderful, tired husband having to do all his work and most of mine, and feeling helpless. Waking up in the night numerous times and feeling like a zombie during the day. Not being able to work at the Journey Center, and only having the energy to work a couple of hours a day from home. Yes, sometimes it isn't very nice...

But mostly it is beautiful. I'm just starting to come out of the "fog" that happens when you find yourself in an unexpected crisis. Like Dorothy, I've been disoriented and sometimes afraid, but now I'm taking a look around me and I'm noticing some things that are beautiful. Even though the land I'm in isn't home, it's not where I want to be and it seems so unfamiliar to me...there are some pretty wonderful things that I see and experience. And the beauty mostly comes in the form of people!...

...new people I would never have met if this hadn't happened- especially the members of the Therapeutic Water Exercise Class at Finley Center. Men and women in their 70's. 80's and 90's (one woman is 93!) who have been taking this class for 10-15 years and who are determined to keep moving, even though they suffer the pain of arthritis. They are so courageous, positive, loving and welcoming...and an inspiration, for sure! And wonderful Donna Burch, who started this class and makes it possible for all of us to be there! And people I haven't even met yet who have been working on getting me a wheelchair (one has been found now, thank you!).

...and people I already know who are extending love, prayers and kindness to John and I on a daily basis. So much beauty there, and sometimes it's hard to take it in!

...and the constant presence of the One who told me long ago..."No matter what happens, I will be with you." There have been so many "no matter what happens" seasons since then, and He is always present and loving and full of grace towad me so that even if everything is topsy-turvy, I experience His love like an anchor.

"Sometimes it wasn't very nice, but mostly it was beautiful." Help me, Lord, to see the beauty around me today and to be grateful for Your gifts...

Joanna

You Don't Know What You've Got 'Til It's Gone

Three times a week I do something I never thought I'd do, not being a "pool person". I spend 45 minutes in the local pool, participating in a Therapeutic Water Exercise Class. I put on a flotation belt, hop on my good leg into the deeper water, and exercise while suspended there and not bearing weight on my left leg. It is SO wonderful to be able to move and exercise and get the blood flowing! :-) 

This morning,  as I was "cross-country skiing"" down the swim lane, the words to an old song came into my mind...just one line- "You don't know what you've got 'til it's gone"...and I spent some time reflecting on the gift of walking, something I have totally taken for granted until now. To be able to stand up on both legs and move to wherever you want to without thinking about it...to enjoy walks and hikes and using your muscles until they are really tired- such a gift!

 I wanted to say to everyone I saw walking around on two legs...enjoy it! Use those legs! Be grateful for what they let you do! I'd give a million dollars right now to be able to run and dance and climb up a mountain. Maybe I'll be able to do that again at some point (that's what we're praying for!)...but for now I'll simply be grateful- not depressed- because my two legs have been a gift from God, and I've been able to do so many things and go so many places.

While I wait for healing and/or surgery, though, I still feel like Dorothy. I've been wandering around this new land I find myself in, getting used to it, meeting new people (Munchkins??) at the pool and at Kaiser...and experiencing the kindness and love that is coming my way. Thank you, everyone...

So here is what I know so far:

•  my condition is not fatal and I don't have vascular disease (like I told John the other day...You're stuck with me for at least 40 more years!)
• what I'm going through doesn't happen to many people and there is very little known about causes and treatments
•  I am not in much pain at this point because I am not weight-bearing, even though the pain from osteonecrosis is intense
• I need to find out what stage of the disease the bone is at, because that determines treatment and prognosis (I'll be seeing an orthopedic surgeon on the 29th)
• it is amazing how exhausting it is to go through this, even though it doesn't seem like I do much! Everything takes so long on crutches and one leg, and adjusting and figuring everything out is very tiring mentally. (Thanks for praying for the staff and board of the Journey Center as we sort through the impact of this on our mission there)
• God is good and never changes...even though so much has changed!

And now I'm off to watch "The Wizard of Oz", since Netflix just delivered it. It's been many years since I've seen it and I have a feeling there will be an abundance of helpful metaphors for my journey.

And you....enjoy walking!  :-)

Joanna

Where Am I?

When I go on a journey, having a map is a must. Once I figure out where I am and where I'm headed, the map shows me the way.

Having osteonecrosis isn't like that. Every doctor I've seen so far doesn't know any more about it than I do from researching on the Internet...it is that rare. Yesterday I saw a vascular surgeon and she handed me the same article I had just printed out at home the day before! And she asked me to keep her posted on my journey so she can learn something about this disease.

I feel disoriented, like Dorothy did when she found herself in Oz. I don't know fully yet where I am- how did I get here (how did this happen)?; how extensive is the damage? (the doctors don't want to do another MRI for various reasons and I'm left not knowing if it's limited to my knee or if my ankle or other joints are affected). Where am I?

And I definitely don't know where I am headed. If it's just my one knee, there will probably be a good outcome. If my ankle is involved, I may never walk normally or hike again. There may be one surgery or many surgeries ahead. The pain from ON is second only to bone cancer and many of the stories I'm reading that others with this disease have written tell of shattered lives and chronic pain and disability. What lies ahead?

What I DO know is that I am not alone...and that makes all the difference as I try to get "the lay of the land". I know that many people are praying. Yesterday, the day after I sent out the email asking for prayer, I actually slept all night and awakened with no pain in my ankle and no extreme stiffness in my knee. That's not happened in two months! Then I received a call from a vascular surgeon at Kaiser, asking me to come in that afternoon for an appointment and we ruled out vascular disease as a cause of the bone death in my knee. This is a great relief, to know that I'm not also dealing with heart/artery disease.

Both of these immediate answers to prayer were a great encouragement to John and I, as were the emails I've received from a number of you. Thank you!

Whatever the reality of my situation is, and whatever lies ahead... I know that I am not alone. Jesus is here now and He will be with me on the path ahead, offering me grace and peace and His loving presence...and for this I am so grateful.

Onward!

The Unexpected Journey

I was thinking yesterday that I feel somewhat like Dorothy in the Wizard of Oz! You know, just living my life as I always do when suddenly there is a tornado out of nowhere, my whole house (life) is picked up and plopped down in some strange land. I have this feeling all the time of "Whose life is this that I have found myself in?! It sure isn't mine..."

But it IS mine now, like it or not. I'm starting out on a new and unexpected journey and I've created this blog because so many of you want to know the details of what has happened and how I am doing. I'm finding that it is exhausting to tell the story and the latest over and over to each invidual person, and this approach helps me conserve my energy and focus on resting and healing.

Thanks for checking in here and caring, and thank you so much for praying. Right now, in the early days after diagnosis, my focus is simply on getting my bearings and then I have every intention of fully engaging in what lies ahead, both the Outward and the Inward Journeys. And I know that I will be OK, and more than OK, because I am not alone. My guide is Jesus and I trust Him so much. And He has blessed me with such dear friends, too...

I've been having trouble with my knee since February....and last week I had an MRI. We fully expected the problem to be a torn meniscus and so were shocked to discover that I've been diagnosed with a rare bone disease called osteonecrosis. Basically, the bone in my knee has suffered something like a stroke. For some unknown reason, the blood supply has been cut off at some point and part of the bone in the knee has died.

This is something not often seen by physicians. My specialist has only seen it 3 times in 18 years and he says that my case is by far the worst due to how extensive the damage is and where the dead bone is located (on the weight-bearing part of the knee).

I will spend the next two months on crutches (have already been on crutches for one month), and I can't do any weight-bearing on the affected leg. Sometimes the area will heal, but the doctor isn't very hopeful that this will happen in my case. The next step would be a total knee replacement surgery.

There are many challenges...figuring out what I can and can't do at home, fighting the Kaiser system to get the care and tests I need (they won't do an MRI of my whole leg, even though it is likely that I have the condition in other joints), and starting to sort out what effect this set-back will have on my ability to work and on the Journey Center mission.

Your prayers are deeply appreciated and, I must say, it's quite different to be the one needing the prayer and support, rather than the one giving it! I am humbled and very grateful for your love and concern. (Thank you for praying for my dear husband, John, as he is ending up with quite a load on top of his usually busy life- cooking, laundry, etc. He is so kind to me!)

So, like Dorothy, I'm off on an unexpected journey! Though I long to be "home" in the life I had before the tornado, this is where I find myself now. Who knows who I will encounter along the way and what transformation I will experience and witness? I will keep you posted.... :-)

Love,
Joanna