New Year, New You?

The last six months have been quite difficult and I most certainly have fallen off the wagon health wise. So now I find myself at a crossroads. I can continue to attempt to anesthetize my pain both physically and emotionally with food my body doesn’t need or I can put my trust in God’s plan for my health and body.

I don’t want to jump on the diet and exercise bandwagon, I simply want to seek God’s will for my body, mind and soul. Not drastic changes but small to moderate changes that are sustainable and help me improve.

I’ve battled a great deal lately with the “I can do it myself “ syndrome. While I still want to strive to do what I am able to do, I find myself needing to be better at asking for help. This is especially true when it comes to asking for God’s help. I simply must remember that asking for help, especially God’s help, doesn’t mean I’m weak but does mean I’m smart enough to know when I am in need of help.

“Trust in the Lord with all your heart, and do not rely on your own understanding.”

Proverbs 3:5

My reality is I can’t walk more than 20 steps unaided, I can’t stand longer than 10 minutes (on a very good day), I’ve lost the feeling in my fingertips and therefore drop a lot of things all the time (which I’m unable to bend over and pick up), and I’ve allowed myself to lose the focus on healthy foods in reasonable portions. Here’s some encouragement I found in my bible study this morning which I plan to post in all the places I need to have reinforcement and encouragement.

“Cast all your anxiety on him because he cares for you. “

1Peter 5:7

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can anyone of you by worrying add a single hour to your life?  “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Matthew 6:25-34

“Many are the plans in a person’s heart,
    but it is the Lord’s purpose that prevails. “

Proverbs 19:21

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

New International Version (NIV) Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

My new year, new you plan this year is:

  • Spend more time in study and prayer
  • Focus on small, sustainable changes
  • Ask for and accept help

What about you? What are your plans for 2019?

What we do while we wait

Anyone who knows me knows that Advent is my favorite season of the year. It’s a pause at the end of a busy year to reflect and wait for the expression of God’s love in the form of a self-giving God made man who came to save us. First of all, I’m so grateful that God keeps calling us back into an intimate relationship and has found a way to dispense with the sin that separates us from our loving creator. Secondly, I’m amazed and thankful that we have the opportunity to rededicate ourselves to this relationship which is just the beginning of this adventure.

Rededication. Commitment. Follow-through. One of the things I believe has changed in our society at large is the concept of dedicating oneself to anything. I see it in children all the time. Parents help them join a group organization or sport and if the child does not like it, the parents let them off the hook of their commitment. Fortunately, I also see families who enforce the commitment for at least a season. What about marriage? I’m not talking about a situation where one spouse is abusive in any way. I’m referring more to the light way some take the commitment they make to their spouse. Marriage can be hard, but that doesn’t mean we give up when times are tough.

For me, the difficult times keep coming in my search for a healthier me. I’ve wanted to give up. It only gets harder to stay committed. But I’ve made a commitment to myself and those I love who are so supportive of me. I’m also committed to not letting this disease sideline me.

Last week I accidentally managed to get back in the choir. But it was a hairy ride, literally. Richard came out just before the processional was to start to tell me the choir was singing one of my all-time favorite anthems and that it was too bad I wasn’t going to be in the choir. Then he kind of got a gleam in his eye. “Why not? Why don’t we get you in the choir?” I had missed choir and while I felt committed to being there, I wasn’t sure I should vest and sing because I hadn’t attended rehearsal. But I’ve conducted the piece before and sung it many times. So, we rushed back to the choir room and there was a mighty throwing of choir robe and cotta while he organized my music for me. We rushed back into the nave and started down the aisle just as the hymn started. Richard moved as quickly as possible to get the portable ramp in place that would enable him to push my wheelchair up on the platform that held the altar and then began to push me up…missing the side at one point and driving me off the edge. Fortunately, the organ crescendo covered most of my screaming and we got to the top of the ramp. He then hustled to the other side to move the ramp so that I could be wheeled into the choir pit. At this point, the acolytes were backed up behind us as was the rest of the choir. I was mortified but moved into the place we had prepared last week for the wheelchair. The choir director never missed a beat and didn’t seem to mind this sudden addition to the choir.

I really enjoyed worshiping with my choir friends and getting to sing this favorite anthem (E’en So Lord Jesus Quickly Come by Paul Manz). It was all very moving for me. But the point is, I had committed to getting back in the choir and I refuse to let my need to use a wheelchair or walker keep me from fulfilling this commitment. I refuse to let this disability keep me from doing those things that I can do with some accommodation. I hate needing accommodation but most others don’t mind helping me. This Christmas I will do what I can to help the choir make a meaningful contribution to worship beginning with Lessons and Carols tomorrow night. I’m also fighting the follow through on my commitment to lose weight. I’m finding this commitment to be one I have to rededicate myself to each day. And even once I’ve achieved my weight goal it will be a commitmentI have to make every day to stay healthy. It’s a promise I have to make to myself, not anyone else. Every bite needs to matter. It’s a path back to making my body a temple of the living God and that is a worthwhile commitment.

What will you do during this season of waiting? What commitments will you make as we proceed into the new year? Prepare you the way of the Lord, make straight his path and come before him to worship – a commitment we can all make. 

Planning Ahead and Gaining Some Self Control

It’s that time of year. The time of year when my mind starts to wrap things up and prepare for the next year. You see, I’m a strong believer in goals and they have helped me feel better about difficult years when I review my progress through time. Especially years like this when it feels likeI’ve had more losses than gains.

Last year I worked through the book Living Forward by Michael Hyatt. It helped me plan for this year and that plan helped me maintain a little focus when the bottom fell out in February. Through all the physical issues I had to work through, having other goals to focus on helped me continue on instead of falling into a black pit.

Don’t just drift through your days, design a life you love.

Michael Hyatt

This year I’m reviewing how things went and using another Michael Hyatt book called Your Best Year Ever to get ready for 2019. 

To plan goals moving forward through this process I first have to dig to the bottom of my beliefs:

  1. Identify limiting beliefs
  2. Reframe those limiting beliefs into liberating truths
  3. Take action

To better understand these steps, I highly recommend this book. Here’s an example of how this works for me.

  1. Limiting belief – I’m powerless to lose weight and get my body back.
  2. Liberating truth – I can utilize resources and support to make small, sustainable changes to my diet and exercise that can last a lifetime.

Then I need to do an After Action Report (something I know from diocesan youth work and the military)

  1. State what you wanted to have happen
  2. Acknowledge what actually happened
  3. Learn from the experience
  4. Adjust your behaviour

What I’m seeing come up over and over in this process as I Acknowledge what actually happened is a lack of self-control. It’s hard for me to admit. I look at both of our children and my husband and they seem to do so much better with issues of self-control than do I. And in addition, I have a person in my life who has been speaking this truth to me a great deal while I denied and ignored it. I’m a child of the era when instant gratification was born. I’ve seldom wanted for much. Both my parents and my husband have seen to it that I have all I need and then some. And left to my own devices, I pretty much assure myself I can have almost anything I want. Oh, we’ve gone through lean times, but I haven’t actually suffered.

So, what’s next? I have a lot of this process to work through and I image it will take nearly until January 1st to complete. YesterdayI went to the library and picked up Willpower: Rediscovering the Greatest Human Strength by Roy F. Baumeister. I’ll be working through that book and hopefully The Willpower Instinct: HowSelf-Control Works by Kelly McGonigal Ph.D. If you’ve read either of these books, I’d love to hear your thoughts. Also, if you have read and recommend other books in this vein, please share those with me.

Meanwhile, back at the ranch, I’ve attended my first Real Appeal support meeting. This is a virtual health support group which is free through my health insurance. We meet online once per week and I can schedule a one-on-one session with the health coach up to once per week. The concept is to change small things in sustainable ways. There are a lot of other perks as well. Suffice to say, this is the best healthcare benefit I’ve ever seen. We had three assignments this week: Weigh in, physical measurements, and log everything I eat. I’m three for three so far this week. I’ve disliked recording some of the food I’ve eaten over the Thanksgiving holiday but a commitment is a commitment.

This week will include the last two physical therapy appointments, at least for now. I’m actually heartbroken as I’ve finally seen some minimal improvements in my pain levels and range of motion for my hip. However, as my daughter Rebecca (also a physical therapist) reminds me, physical therapy isn’t meant to be a cure but is meant to help me improve my mobility and range of motion and to provide me with coping tools moving forward. I’ll probably be crying in December at the loss of this tool but I’ll work hard on the exercises my physical therapists gives me and try to maintain, if not continue to improve, my range of motion and activity level.

Are we truly moving into the last week of November? Where has this year gone? Please pray with me for those for whom these holiday times are sad and difficult. Those who always do without, those who’ve lost a loved one this year, and those who suffer from disease both physical and mental. But also take time to “stop and smell the roses” for yourself. The year that follows is always more meaningful when we stop to take stock in all the blessings we’ve enjoyed.

Being Thankful for Where I Am

As we move into Thanksgiving week (how could you miss it), I’m working on considering all the things I have to be thankful for. They are many and I’m fortunate in all that I have and for those in my life. However, I keep having to face those things I no longer have or things I can no longer do. Oh, I’m hopeful and work at remaining optimistic, but the fact is there are now limitations. While I know there are so many people with greater limitations and far less support than I have, I still have to cope with the change in my reality.

Richard and I were talking about his company Christmas party we attended just last year. It was wonderful. Held on a retired navy ship, there were lots of options of food to eat, people to socialize with, and historical information on this now military museum. I was saying how I wished they’d do that again this year when Richard reminded me that I wouldn’t be able to get around on the ship. There were lots of navy ship type stairs everywhere as well as narrow passages with doorways to step over in the hatches. I really would no longer be able to enjoy that party in that place. And that’s not the only thing I could do just a year ago that is no longer on my dance ticket. Really??!!?? The day to day is difficult enough without the realization that now things are way out of scope for me.

Others deal with this all the time. For them, these activities may never have been an option. For others like myself, they are activities we remember being able to do “before” that are no longer something we can look forward to or enjoy. Those are the big things. There are little things as well.

This week a meeting I was scheduled to lead in a room that was handicapped accessible was moved for me to a room that was not accessible. Had this happened and the change affected one of the other attendees, I would have raised cane. What did I do? I cried. Large heaving ugly crying. It was at the end of a particularly difficult day and it was one thing too many. It turned out to be an honest mistake made from the position that others do not recognize these impediments that are so much an hour-by-hour part of my existence. The bottom line is that I need to learn to stand up for my self as vigorously as I would stand up for another. Not something I’m used to nor good at.

So how do I continue through all this, the lack of the ability to participate fully in things and learning to stand up for myself, in a season of thanksgiving? I really don’t know. It’s a day by day thing. But it’s not an option, it’s a mandate. What I would ask of each of you is that, as you plan activities and participate in the activities others plan, please consider the limitations of yourself and others.

  • Do they have dietary restrictions such as a need to eat gluten-free? Or allergies to consider?
  • When you are attending any function are you conscious of those who can’t tolerate strong fragrances and limit your use of perfume or aftershave?
  • Is your home, or wherever your event takes place, friendly to those of limited ability? (I’m facing missing at least one Christmas party because I can’t get into the host’s home.)
  • Are you asking too much of yourself or others by trying to do more than is healthy for you? That would include elaborate meals, tons of shopping, lots of events to attend? Is that really worth it? Your energy and capacity to do things is a finite thing. Will you really enjoy the holidays if you are worn out?

Please consider others and take care of yourself. It is vital that you relax and enjoy the holiday season starting this week because you never know what will change in your life before the next season begins. I’m always amazed when I realize that last February I was on a walk for 1.5 miles and now I’m struggling to get back to where I can get around with a walker. I no longer have the hope of doing anything that takes a great deal of walking (practically anything outside the house) without a wheelchair. It hasn’t even been a year in my life!

So, this year, this season, I choose to focus on what I can do, on what I have, and on sharing the love I still so vividly feel that Jesus shares with us. After all, that is the most important thing in any season. Our family will try to focus on fewer things and more caring for others. I hope you’ll join us. But first – we’ll be thankful. I’ll be thankful for each of you, for the people I work with, pray with, sing with, and whose company I enjoy. I’ll be thankful for all the things I learn from others. For their perspective, their presence, and the knowledge they choose to share with me. And finally, I’ll be thankful for the plan God has for my life – whatever that is. As God’s love for us knows no bounds and provides all we really need in life.

Progress – I can finally say I’m having more good days than bad. Working from home has been a Godsend. My energy levels are much better – at least 2 days a week. On Monday, Wednesday, and Friday I pretty much still come home and want to go straight to bed. I’m gradually able to run a few errands with just my walker but any more than a handful of steps requires a wheelchair. But I’m not hurting while I’m just sitting any longer. I haven’t gotten the most recent set of blood value information but I’m truly hopeful that the inflammation is down some more. Physical therapy is a miracle. I’m actually excited to be able to ride the incumbent bike now – it only hurts for the first 2 or 3 minutes. I still need to build up stamina but that’s a HUGE improvement.

Thanks for your continued prayers and support. They mean the world to me and to our family. I pray you enjoy the blessing that is thankfulness this week and all the time.

Practicing Presence

Each day I’m confronted with things I’m no longer able to do. While I have faith that I will be able to do some of those things again, it doesn’t appear that will happen any time soon. So, what’s left when you feel you are unable to do the things you’ve already done?

This is becoming a more prominent issue as we head into the holiday season. Standing at the stove and cooking dinner has become impossible for longer than 5 minutes at a time (however, I’m learning to do a lot sitting on the seat of my walker). Cleaning the house? I wasn’t good at it before but running a vacuum while using a walker is pretty difficult to say the least. What about hosting dinner? Ha! Shopping for gifts in a store? You’re kidding, right?

Day by day I have to consciously think about what I can still do more than think about what is out of scope. I personally have a deep-seated need to feel as though I’m contributing not only at home but in the world at large. So, what can I do?

The thing that has become so significant is the practice of presence. In our furiously busy world these days, we seem to be too busy to simply sit with someone and listen to their stories. Sitting is something I’ve become a pro at! Listening is something I’m developing (those who know me will understand how difficult that is for me). But I’ve found this gift of presence to be profound not only for those with whom I am sharing time but for me as well.

Two Sunday’s ago, I met a young woman at the Starbucks®. I must confess that she spoke to me first. She was sitting in one of the comfy chairs in a quiet section. She asked me how I was doing and I replied with the usual platitudes. Then when I asked her how she was something magical happened. She told me she was well, things had become difficult but she knew it would be okay. I’ll spare you all the details but, in the end, we had actually forged a friendship. She’s engaged to a member of our military who is away serving our country while back at home she has lost her job and her home. Having someone to talk with who “gets” the military thing seemed to be so helpful to her. We prayed together before parting ways which was so powerful and now, I pray for her daily because, again, prayer is something I can do.

Yesterday I had the opportunity to sit and talk with someone I don’t know very well. She had always come across as a very bitter person when I was around her. Oh, she’s still pretty bitter, but she’s been working her way out of that as best she can. She has some commonalities with my daughter Rachel and my health – more than either of us realized – so there was much to share. After quite a while of talking off and on, our day was coming to a close and she stopped me, looked in my eyes, and told me how deeply our conversation had affected her. She no longer felt like she was trying to deal with these health concerns all by herself. Wow. Just wow. None of us likes to feel alone. Dealing with chronic illness and chronic pain has the potential to be very isolating even on good days.

All this is teaching me that listening to others shows that you value them and provides dignity to them. “I care enough to truly hear you.” Sharing your story lets them know they are not alone.

This morning we will be celebrating All Saints Day with Baptisms and Confirmation (what a coo to have the Bishop on such an important feast day!). There’s one sentence in the service that has been poking at me and nudging me for the last 2 years: “Will you strive for justice and peace among all people, and respect the dignity of every human being?” It’s become my daily driver because, again, it is something I CAN do. I’ll use that as a guide when I stop to vote on my way to church this morning as well. It guides and directs my conscience. It, along with following the teachings of Jesus, has become my mission and helps me focus on what I can do.

Practicing presence. Thanks be to God.

Progress – Physical therapy really hurts while I’m working but is starting to pay off in less pain during the rest of the time. It’s still very day-to-day and doesn’t add to my stamina but less pain is a good thing.

Working from home is a God-send. It doesn’t lessen the pain, but it allows me to have peace and to not stress out just trying to get to work each day. Every other day feels like Friday because I know I will be able to be home the next day.

I’m off to the polls, praying the whole way. May God have mercy on our country, our community, and the world because only God can provide the healing and guidance we need. I pray you are voting in this mid-term election. Whatever you feel led to – please vote and pray.

The Road is Long

This snippet of lyric has been running through my head for the last several days. These words by Bobby Scott and Bob Russell are a good reminder to me that it’s not a sprint but a marathon. (Now that you may have that earworm stuck in your head, the song is He Ain’t Heavy, He’s My Brother.)

This week was week two of physical therapy. I’m working with a second therapist named Rachel (what are the odds?). My regular PT is, wait for it, on her honeymoon (does this sound like my Rebecca?). Anyway, she, just like my Becky, is very sweet but a rigorous coach. My range of motion has definitely increased but the pain has not lessened. Some days it’s actually been worse. But it’s a step by step thing (pun intended). Fortunately for me, I can call our family PT and ask questions. Friday was the most active PT appointment and is still reminding me that I actually have leg muscles and they can feel overworked (ouch). Becky was able to suggest stretches that helped.

I think when I started physical therapy my subconscious believed I would feel better and be able to walk more. My head also knows that physical therapy, while probably my favorite medical treatment due to results, is not a cure-all. After my diagnosis in March of 2017, I scrambled to learn all I could about this disease. Then I took what I’ve learned and roll the reel of my memories of my physical history and realized I had suffered from this as far back as 2004 at the very least. Back then, I had knee and hip pain (same right hip and my left knee) along with frequent migraines. When blood tests were run my ANA results (a marker for autoimmune diseases) were very high. So they started running tests. Lots of tests. There was concern about MS. They were worried about Fibromyalgia. Was it Lupus? Even the Rheumatologist was confused. By 2006 I was frustrated and threw in the towel. Nothing we did alleviated any symptoms and no one could tell me what was wrong. At that point, I was still able to climb the stairs well enough so I let it drop. Meanwhile, my ENT wanted me to have surgery to remove a sinus cyst. The migraines improved somewhat. No reason to investigate further, right?

Fast forward to 2010. Richard had been living in Tampa for his new job for more than a year and it was time for Rachel and me to join him. He and Rebecca (in Tampa for the first 2 years of her degree) found an apartment on the bus route (a required element of a new home) and Richard wanted to enjoy high ceilings as a way to make up for moving from a three-story, 5/4 house to a 2/2 apartment. So, we moved into a third-floor walkup. This spelled disaster for my hip. By the end of our year there I was nearly crawling up to the apartment and carrying groceries on that climb was out of the question. My exercise was only ever done in a pool. I was treated for bursitis with limited improvement. I did learn a lot from the PT but just didn’t find lasting relief (ding, ding, ding, this was a clue).

Move forward to 2014. My GP was concerned as those ANA markers weren’t getting better (they seldom do). At the same time, Rebecca tells me on a trip to Universal Studios, “Mom, your gait is really bad. You need to see someone about that, preferably a physical therapist.” Between the recommendations of the two of them, I sought treatment. Physical therapy provided better results this time. I also recognized the need to get some of the weight off the joints. But still, regular exercise was problematic because my hip was so touchy. I just figured this was going to be my life as I aged.

From 2016 through the beginning of 2017 I lost 55 pounds. Yea! However, I was still walking funny. My GP, with the next round of severe hip pain, referred me to a rheumatologist. This time, I found one that picked up on clues but we played around with the diagnosis for a few months and I felt like a chemistry set with the medications he prescribed. Finally, even though I don’t have the gene marker for AS, he diagnosed me with it. First, there was a shot in the outside of my hip, next on the inside of my hip. During that one, he pulled an amazing amount of fluid from the hip – even he was surprised – said he’d never gotten that much fluid out of that joint before (and this is not a young man or a new doctor). The pain wasn’t really lessening so I started using the walker to relieve the weight on the hip. Next, the left ankle started in. Surely this is just an overuse issue as it was on the opposite side, right? Another injection and the doctor telling me that no, this was another joint which had succumbed to the AS. We added the air cast on the ankle and he added me to a drug study for AS patients.

During the intake exam for the study, he is required to poke and prod in specific spots throughout my body to see which pain points are bothering me. OMG!! I didn’t even know I hurt in most of those places but he found over a dozen spots that weren’t just tender – I flew off the table with more than half of them. Yikes!!

From that overlong history you can see this really isn’t a sprint. It took me a long time to get here and to gain the massive amounts of weight that came with it. It’s going to take a while to get anywhere along the path of better health.

There are so many days where I wake up praying that this is the day I’ll see improvement. Maybe today I won’t hurt so bad. Perhaps this evening when I come home from work I won’t be nearly in tears and exhausted from a day of dealing with this pain and limited mobility. Most of the time that’s not true. I have a good day once in a while but not even once a week. It’s really hard not to lose hope. But hope has morphed from hoping I’ll be able to travel extensively and walk wherever and whenever I want to hope that I’ll be able to move without a wheelchair and hoping that one day I’ll be able to walk around the block again. Even those hopes seem far away some days.

But our lives are filled with different roads to travel down. The song that was sung at each graduation from my high school has served me well throughout my life so far. I choose to continue to travel down the road less traveled – hopefully paved and not uphill, but not just the easy road. I know that Jesus travels that road with me and often pushes my chair as I go. But it’s still a “long, long road.” I hope you’ll continue to travel with me.

The Road Less Traveled

BY ROBERT FROST

The Road Less Traveled

Progress? The study directors for the AS drug study has provided me with an update on my inflammation markers and my hope for improvement on Cosentyx: “Your Sep. 26 hs-CRP was 10.6 mg/L, and the Oct. 3 was 9.0 mg/L. Still “high” but it is coming down!”

To put that into perspective the Mayo Clinic posts these ranges:

Lower risk: <2.0 mg/L

Higher risk: > or =2.0 mg/L

Acute inflammation: >10.0 mg/L

A Time to Rest

Has it really been three weeks since I last posted? Time really does fly when you have lots to do (fun? Sometimes.) Since I last posted I’ve been blessed to have my parents visit and I’ve attended our Diocesan Convention. The visit with my parents is always a cherished time. I can’t get enough of time with them. I wish I could pick up Tennessee and move it closer to me here in Florida.  We were able to go see how our condo in Maitland, Florida is doing. By the way, this wonderful condo is for sale – who do you know that needs a 3/2 close to Mickey Mouse?

Attending diocesan convention is always a treat as I learn a great deal and see wonderful friends I may not have seen in quite a while. But this year was extra special for two reasons. The highlight for me was being in the sixth row as our Presiding Bishop, Michael Curry spoke in a plenary session and then preached and presided at the Eucharist. While he became most famous by preaching at a royal wedding, I believe the world would have taken note of him just from the way he preaches the love of Jesus to a broken world. He glows with that love and the world responds to him in the same way. To be in his presence is to have a glimpse into what heaven may be like when we all learn to love from our hearts as Jesus teaches. It’s really too bad that I’m not a good photographer but here’s a couple of pictures from his presentation.

The other reason this convention was special to me? I was able to attend with both my husband who was an alternate for our church and my daughter who knows absolutely everyone in this diocese. I vaguely remember being in that position as a youth and young adult in the Diocese of Southeast Florida. She was very good about introducing me to many people, most of whom would look at me when Rachel was distracted and tell me how wonderful she is and how blessed they feel to know her. My momma’s heart is so very proud of her.

Today finds me at the end of two busy weeks and fighting a fatigue I’ve never felt. For example, last night I slept for 10.5 hours. I’d like to tell you I feel refreshed but not really. I finally feel a bit more rested but I can see that the day ahead will still be challenging on the energy front. This is after sleeping usually more than 7 hours a night for a few weeks – a new record for someone who’s used to sleeping somewhere between 3 and 5 hours a night. This is just one more challenge of having AS.

Currently, I’m taking 5 medications for my AS and 3 for other issues. That’s a lot of chemistry. This week I also started physical therapy. The PT has greatly increased my range of motion but I haven’t yet experienced any decrease in pain. If anything, I hurt worse. The physical therapist did, however, show me a way to be more comfortable when I sleep so the quality of my sleep this week has gotten better (more “deep” sleep according to Fitbit®).

So today I rest and plan the week ahead to include times of rest and self-care. This week I will also begin working from home 2 days a week. What a God-send!! It was actually a shock when my boss told me the executive team approved this request. It had been my boss’s idea and my doctor was only too willing to write the note requesting this exception. It means I will travel 4 fewer hours this week and if I need to, I can work in my jammies or something just as comfortable. This will also limit my exposure to germs which has now become a frightening thing as catching a cold has the potential make me deathly ill (no immune system any more due to medications and AS). It will be a challenge for Rachel as she is used to having full run of the house while Richard and I are at work. I really hate to infringe on her space but know this will help me a great deal.

So, my focus this week will be on what my counselor often talks to me about – a focus on self-care. This is something that is truly difficult for many – paying attention to taking care of myself. You know, the goose or the golden egg theory. It’s time to take better care of my goose. In my heart, I know that by doing this I am better able to live into the plans God has for me. My calling to help teach in a bible study. My need to return to better mobility. And finally, my bounce back from a fatigue far worse than I’ve ever experienced.

Rest, I shall. Think and pray and listen for God’s call and God’s will in all things, too. Then I can press on to live into God’s purpose in my life – whether I’m physically challenged or not.

Things I can do even when I’m bone tired:

  • Fall asleep in my chair directly after dinner each night (well practiced for the last two weeks)
  • Watch football (Go ‘Noles!)
  • Write this blog
  • Read both edifying books and for pleasure
  • Study the bible and facilitate our new women’s bible study at church
  • Talk with my loved ones both present (Richard, Rachel, Richard’s parents, and my beloved church family) and far away (Rebecca and John and my parents). The great gift of presence.
  • Make plans for what I pray will be an amazing, loving Christmas. Since everything takes longer than Rachel and I plan as we both fight fatigue, we have to start planning way early to pull anything off.
  • Pray for each of you and our world. The richness of the Episcopal church provides words of prayer when I’m struggling to find my own words.

Please take care of yourselves as well. As I keep telling people, we never saw this disease coming and, while I can now look back and see symptoms as early as 2004, it felt like it happened suddenly and my life has been derailed. If I’d listened to my body sooner I might have been able to do more about coping with less struggle. I’ve learned that the best thing I can do for this condition is exercise. However, because I wasn’t exercising in the first place I am now caught in a catch 22 – I need to exercise to be able to move but I need to be able to move in order to exercise. So please go for a walk on my behalf. Or, if you’re up to it a hike, run, swim, whatever, as long as you move. Day by day I’ll work myself back to where I can move but it’s a long way from here so I’m depending on you to lead the way.

Something encouraging I discovered this week

A friend in an AS support group shared a link to an article that provides hope for people with AS. I really hate it that we have to use mice for medical studies but the little dudes are really coming through in this research. Here’s the article from Ankylosing Spondylitis News.