Sunday, March 18, 2018

8 Months: Positively Discouraged

I am eight months post-op second (right) hip. There has been encouraging progress in the past month. I am also feeling really discouraged. However, the discouragement is not really even related to the right hip, but rather compensation issues as we continue to work through trying to rehab my body from numerous issues simultaneously. Is it possible to be positively discouraged? Grateful for what is going well, but feeling discouraged about the numerous challenges at the same time? I did not even start writing this post until the day before the 8-month post-op mark for my right hip. Hips have been doing well for the most part. Neither hip is what I would consider 100% recovered yet. However, in the past month, I have noticed I am not favoring either hip, and I am returning to more normal methods of getting dressed, doing daily tasks. Both hips can still get sore and be prone to flares at times, but pretty much back to "normal" pre-hip issues ability and had even been discussing with PT a couple of weeks ago trying to run. However, as the cortisone injection for left shoulder has apparently fully lost effect, shoulder is becoming more limiting globally and is flaring up neck, back, left hip (20+ months post-op).

The positive--right hip is doing really well! I am rapidly regaining range of motion, strength, ability. I was back to pre-hip issues ability with exception of what shoulder is interfering with. Thus, need to shift perspective. This is not an isolated hip issue at this stage but a more global compensation issue surrounding shoulder and neck issue that needs sorted out to allow progress with hips and with continued healing from the other injuries.

I can walk outside back to pace, duration I was doing years ago! I can do elliptical at faster pace, longer duration than I was doing between hip scopes. I was swimming at former pace and duration....briefly, before shoulder injection started to lose effect.

After a walk outside! Yes, shoulder is taped.

Elliptical a few days ago after already walking outside.

Sitting criss cross--more comfortable, better ROM.

Kinesiology tape: helps support my shoulder.

Taped shoulder, but also bony prominence showing due to atrophy.
Unintended things also shown in this photo: how flexible I am without trying, old scar on arm from past surgery, posture of dejection which totally fits with current discouragement, even though this photo was taken over a week ago and was just the position that worked to show tape and bony area.

Showing atrophy more clearly with tape off.

One of the outcomes of the various conversations with hip surgeon, PT, etc. a month ago had been the general consensus that my left shoulder needed a third opinion before making any decisions. I saw the third surgeon a few days ago. He was familiar with Ehlers-Danlos syndrome and hypermobility and how that affects (complicates) things. He checked my shoulder, asked my perspective/history of things. He recommended against surgery. On one hand, I was relieved when he recommended against surgery. On the other, I was disappointed as he agrees I have exhausted nonsurgical approaches, he agrees I am struggling, but had no new suggestions for managing things. He recommended taking a break from swimming and shoulder PT to see if a break would help calm it down. However, we have done this multiple times in the past, had been trying to work on increasing swimming as that is how we managed best in the past.

I had the shoulder taped again just hours after the orthopedic appointment. I had removed the tape a few days in advance to let the shoulder go back to true reality as much as possible, but without me suffering more than strictly necessary.

I felt (still feel) pretty discouraged and disappointed. Not for a recommendation against surgery, but for total lack of any hope from the appointment. I had gone into the appointment keeping expectations low and honestly no preconceived ideas of what I wanted in terms of surgery recommendation. All I was looking/hoping for was being listened to--I was, and some glimmer of hope moving forward--this did not happen. I was not outright dismissed, which I am very grateful for. However, it did feel like the underlying medical issues were used a bit as an excuse.

I had hoped to get a brief perspective from PT how to proceed with rehab until my next appointment, but did not hear back before the weekend, so sort of making things up as I go for now as uncertain what to do or not do with rehab as exercises for neck, back, and hips all use shoulders. Thus, it is not as easy as just stopping shoulder PT, but continuing with PT for everything else. It all interconnects. This was actually a point that I do not think was truly addressed by the surgeon--he acknowledged neck/shoulder could be and probably were keeping each other flared. However, did not take into account role of shoulder on flaring up back and left hip. So, hip rehab has been stalling out due to shoulder, now we are backing down shoulder....but not sure how to proceed. I took a total rest day--I did not feel well as weather had changed, not been able to swim as normal routine, had planned to try some PT exercises, but then opted to wait until I heard back from PT, so never did any.

Over the weekend, I did try to work through some of my home exercises, see what I could do that was not using the shoulders at all, or using them minimally. The colder weather is not helping--both from flaring things up and from lack of ability to walk outside.

Quite honestly, I am still actively rehabbing both hips, not only the right hip.  My right hip seems to be doing better than my left hip in some ways, but not as well in others. It was at 8 months post-op left hip I was finally optimistic about left. However, that post also addresses some of my ongoing nagging concern--how much of some of these issues are compensation issues, and until we do get sustained plan for shoulder, fighting a losing battle. Right shoulder has been giving twinges again the past couple of weeks in spite of being super careful. At a loss. But, still refusing to give up. Regrouping....

I am grateful for great medical care from a team who support me, have my best long term interests in mind. I need to continue to choose to remember my recovery theme: this is not a race to see how fast I can recover, but a journey to see how well I can recover. This motto applies to life with all of the chronic illnesses. It is worth taking the time to let my body heal at its own pace.

Copyright © 2018 by Stef. All rights reserved.

Friday, February 23, 2018

7 Months: Progress!

Time marches on. February 18th marked 7 months post-op for my right hip, but I chose to wait to finish writing this post, as I was scheduled with my hip surgeon for a couple of days later to recheck things after the car accident last fall.

Travel was challenging as usual, even with family doing the driving. There were a lot of people praying and we made it safely. The travel plans were precarious with ice/sleet/snow taking place prior, during, etc. However, there is a positive side to all. The sun on the ice was gorgeous!

So much beauty!

I am making progress, albeit slowly. The physical therapist and surgeon were very pleased with my progress and how things are going, especially in light of the challenges. As long as I keep making progress, no concerns at this stage. This was reassuring and such a relief to hear!

I am walking again! Like really walking! As in walking for exercise! Not just walking as essential to get around! Most of the walking is on an indoor track. However, on a warm day late January, I walked to PT (not far, maybe half mile?).  It felt great!  First walk outside since months before surgery. On February 18th, I celebrated getting through another month by going for a longer walk outside! Just for the fun of it! The weather was unusually warm, PT had OK'd me to walk in the neighborhood, but I had not been able to try until now. It felt amazing to get fresh air! This is the first I have walked this "old normal" route in 2-3 years.

I am also slowly regaining range of motion. I can again sit with legs crossed...sort of.

First photo:
This is at ~15 weeks post-op, just couple of days before the car accident that set me back months, caused dramatic loss of ROM, strength, endurance, general ability. This is sitting criss-cross in photo on left, then left leg in and right leg extended in center photo, then right leg in and left leg extended in photo on right. (All photos taken using mirror)

Second photo:
This is at 6+ months post-op, 2.5 months post-car accident, regaining ROM again finally! This is first I have been able to even try sitting criss-cross since the accident. Photos in same sequence as above.

In some ways I am doing better now than at 7 months post-op left hip in spite of the additional challenges from the car accident.  In other ways, still way off track, behind schedule.  I am not comparing, just observing. I am so grateful for each regained ability, no matter how small.

Copyright © 2018 by Stef. All rights reserved.

Tuesday, January 23, 2018

Gingerbread Cookie Recipe

We recently had a cold day, windy, snowing, and with blizzard warning.  It was a great day to stay inside. Lots of organizing in the morning, PT exercises in the afternoon, more organizing. Then, baking with my sister! This is a recipe that I no longer recall where I first got it, nor to what degree I modified it from original. This is one of my "healthy" cookie recipes. But, it is still a cookie.

Gingerbread Cookies

Gingerbread Cookies Recipe

½ cup butter, softened
1/3 cup molasses
add honey to the molasses to make ½ cup
1 egg
2 cups whole wheat flour
1 ½ teaspoons baking soda
¾ teaspoon ginger
½ teaspoon cinnamon
½ teaspoon allspice
¼ teaspoon nutmeg
¼ teaspoon cloves

Cream butter, molasses, and honey. Add egg and mix well. Sift together dry ingredients, then add to wet ingredients. Mix. Roll dough on floured surface. Cut into desired shapes. Bake ~350° for ~10 minutes, or until firm in center. Baking time may vary depending on size of cookies. Decorate as desired, if desired. 


Copied from here:

I am not sure where this was copied from....or why baking info is missing. Yes, I increased the butter. I use blackstrap molasses. The dough can be chilled and then rolled, cut, and baked at a later time.  I made up the baking temp and time. 😉
*Note: infants less than one year of age should not have honey.

Although I typically think of gingerbread with Christmas, these can be used for numerous seasons, holidays, etc.


Valentine's Day

I have made them in the shapes of leaves, acorns, and pumpkins for fall. I have decorated with icing, sprinkles, chopped walnuts, etc. The iced gingerbread people above, do not require any fancy decorating supplies.  I used a baggie and snipped off one corner with scissors, then piped the faces and typical gingerbread look with that. Super easy!  (Warning, I cannot recall how many baggies I went through....they have a way of bursting.  Oops.)

This scene was created by my sister and me using gingerbread cookies and only basic items.

Little House in a Small Wood

Copyright © 2018 by Stef. All rights reserved.

Thursday, January 18, 2018

6 Months: Progress Finally!

Once again I am at the start of a new year, grateful to have made it through the last one, hoping this year will be better. I am six months post-op right hip, 18.5 months post-op left hip, ten weeks post car accident. Six months seems to make a difference with this hip surgery recovery.  It must allow enough time for more thorough healing. I recall last year making sudden gains around 6 months post-op, and this hip has been similar in some respects.  However, quite different in others. This month started out still struggling after the car accident, but making progress finally. There had been more time for healing. 

In some ways I am still not back to where I was before the accident early November.  In other ways, I am doing better.  I suspect much of this is simply the time factor--healing takes time.  We are in "uncharted waters" with respect to this recovery.  Rehabbing from hip surgery and recovering from a car accident are not a good mix. I am no longer "only" rehabbing from hip surgery.  But, neither am I "only" recovering from a car accident. Rather, I am trying to heal from both simultaneously. Except that they sort of interfere with each other. I suspect there is no standard timeline for recovery from car accidents since they can vary so much. There is a somewhat typical estimate on recovery from hip surgery. However, I am totally off track now.

We made some new discoveries over the past month. Kinesiology tape (Rock tape) works incredibly well! Taping my neck, was the first I was able to swim more than a few laps and with far less pain!  We also tried taping right hip with good success, left shoulder with reasonable benefit, left hip with dubious outcome, right side of mid-back with no detectable difference (that I know of). I am sensitive to many adhesives, so we started out with only small area, did not leave the tape on as long as it could have lasted, checked skin for irritation. Then, me being me (careful) and knowing my body, took a couple of extra steps--removed any residual adhesive, then applied hydrocortisone cream.  Did a few weeks of taping different areas, then the shoulder tape was pulled off at the clinic, three new areas taped, I had other appts, so kept going through the day.  That night, noticed shoulder was red/irritated where the tape had been, and mildly itchy along some of the edges of the new tape.  So, I knew this would be the last taping for a while.  It was nice while it lasted.

I recently had a recheck with local orthopedic surgeon to see how I am doing with hips, healing from accident injuries, and recheck the shoulder.  I really was not sure what to expect as I realize the entire situation is complicated. The appointment went very well.  He agreed that the situation is challenging, as well as how difficult (impossible?) it is to predict recovery, because my body is trying to heal from two major issues at once--major surgery and auto accident injuries, plus has other ongoing issues. He said my body is not ready for more surgery at this point. He suggested I get back in touch with my hip surgeon regarding rechecking hips earlier than the next scheduled follow-up appointment there. He said to wait and give more time for healing on the neck issue before getting too concerned, or pursuing more testing. My left shoulder was thoroughly rechecked, trying to determine the extent the various issues are bothering me; he also checked laxity by gently pulling on my arm above the elbow, asked if it hurt at all?  Nope.  He then told me my shoulder is subluxating (partially dislocating). Oh. He gave me another cortisone injection for left shoulder with the goal of giving me a break from the shoulder pain at least, making more progress in PT--even though we have already done this twice before and keep ending up back at the same place.  He had me move my arm after the injection while still in the exam room, after a short time asked me how it felt--much better! Also, could move it better!  But....that again confirms the shoulder is a significant part of the ongoing issues.  After injection, he said he suspected I'd need surgery once ready.

I am still dealing with aggressive rehab--8-10+ appt each week since the accident. It is beyond exhausting, and becoming counter-productive...not time to do exercises on my own, or too tired from all of the running from place to place. I can drive, but still do not have a car.  I had the use of my sister's and was able to get myself everywhere most of the week her final week of break--such freedom!  But, short-lived. I am still employing my typical coping/management tactics and focusing on what I can do, not what I cannot do. 

Copyright © 2018 by Stef. All rights reserved.

Wednesday, January 17, 2018


Trust. Regardless of circumstances. So hard to say and live: "O God, take me, break me, make me." It occurred to me several years ago that spiritual health/healing often comes about through physical illness/suffering. My body is so broken, but is my soul broken and contrite before the Lord? Am I surrendering fully to His will and plan for me? I am certainly in the storms of life...curious to see what God is preparing me for.

"Some of the storms of life come suddenly: a great sorrow, a bitter disappointment, a crushing defeat. Some come slowly. They appear upon the ragged edges of the horizon no larger than a man's hand, but, trouble that seems so insignificant spreads until it covers the sky and overwhelms us. Yet it is in the storm that God equips us for service."
"No man is made until he has been out into the surge of the storm and found the sublime fulfillment of the prayer: "O God, take me, break me, make me.""

Copyright © 2018 by Stef. All rights reserved.

Monday, January 8, 2018

2018 Devotional Reading Plan

Each year, I choose how to go about my readings for my personal devotions. My plan for 2018 is to read through the Bible from Genesis through Revelation by the end of the year.  I have been reading through the Bible every year since 2000.  Some years I find reading plans online that go from cover to cover, other times, chronologically.  I also have a chronological Bible set up in daily readings.  It has also been helpful to me to change what version I am reading each year. I have read NIV (New International Version), KJV (King James Version), NKJV (New King James Version), ESV (English Standard Version), NASB (New American Standard Version).  Just the minute differences in wording between versions can give me a perspective I have previously missed. This combination has deepened my understanding, but more importantly has strengthened my relationship with God. It is amazing to see His love for each person. God's Word truly is living--it has new meaning, new insight each time I read it.  It offers encouragement, conviction based on what circumstances I am in, but is always what I needed to read at the time. I was unable to find the web site I got my reading plan from, but came across this site and at initial glance, it looks like a similar schedule to what I am doing, plus lots of other options.

In addition to Bible reading, I also read from one or two devotional books each year.  The past few years have been Streams in the Desert, as it meets me where my biggest struggles have been--complexities of joyful living in suffering. Daily Light on the Daily Path is a favorite.  My hard copy has both morning and evening readings, but the online version does not appear to have both. This one is entirely Scripture, but arranged around a topic for each reading.  My Utmost for His Highest, is another favorite I have read over the years. There are others I have read, many more I have not read.  These are simply the ones I come back to year after year.

In addition to the above resources, I also utilize Bible Gateway when searching for specific verses, or want to be able to copy and paste into a document, email, blog post, or Facebook post.

Hebrews 4:12 (NIV)
For the word of God is alive and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart.

Copyright © 2018 by Stef. All rights reserved.

Monday, January 1, 2018

Farewell 2017, Welcome 2018: A New Year, a Fresh Start

The end of a year provides a good time to reflect over how the year has gone, what victories were won, what struggles endured, what challenges solved, what difficulties still to be surmounted. 2017 was challenging for me, containing multiple unexpected discoveries. From new diagnoses, to new surgeries, to new location (moving out of state), to having to find/create a new support network, to new injuries, to new car accident, etc., the year was difficult. However, it also had its good times, its victories in the midst of the hard things. I know I learned much through the challenges, and am prepared for things to continue. The new year offers a great opportunity to make a fresh start and I hope 2018 is calmer. There are some suspected challenges ahead, but most of the future is completely unknown. I am in a position of nearly complete dependence on others for multiple things.This is hard for me, but a reminder that I am completely dependent on God for all. I pray I am able to look to God to carry me through the difficulties, give wisdom for pending decisions, provision for daily needs.
“Wherever you are, be all there! Live to the hilt every situation you believe to be the will of God.”
― Jim Elliot

"Therefore if any man be in Christ, he is a new creature: old things are passed away; behold, all things are become new."2 Corinthians 5:17 (KJV)
"Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus."Philippians 3:13-15 (NIV)
Happy New Year! Welcome 2018!
Copyright © 2018 by Stef. All rights reserved.