Sunday, May 20, 2018

10 Months: Ongoing Progress!

I am ten months post-op right hip surgery. Progress has slowed dramatically, but that is because I am getting ever closer to full normal ability.  It is really just continued gradual progress. I wrote on how well things were going last month, and this progress is still ongoing. Major accomplishments in the past month include having running gait checked, solo long distance travel, able to sit long enough and well enough to be making it to church regularly again for first time since prior to left hip surgery. Also, seeing both Iowa and Minnesota physical therapists and getting great reports from both--for the most part. My shoulder is flaring neck and back, which in turn are flaring left hip, which in turn can irritate right hip. But overall, hips are solid, I have confidence in their ability to handle normal, everyday activities. So much progress in just a few months. These photos are taken same location, roughly same view (little different angle), ~3 months apart, both on the way back from Minnesota for medical appointments. Both are beautiful in different ways. In some ways, the dramatic changes seen across seasons, seems to illustrate the dramatic change across time with rehab and recovery.

May 18, 2018 (10 months post-op)

February 21, 2018 (7-months post-op)

The recent travel was a huge milestone! Travel has been difficult for me ever since the constant pain started many years ago. Hip issues made it worse. I finally had a car a few years ago that made trips easier on me, but still had the hip issues. The accident last fall not only re-injured things, it also totaled my car. I finally got my car replaced! This is a huge answer to prayer! It fits me, is more comfortable to drive. This trip was 1000 miles total, thus not a minor undertaking. I did half first day, the other half split between couple of days. My right hip had major issues with driving pre-op, again after the accident. Now pretty much back to normal with driving! My right hip was not the problem. Left shoulder, left side of body was the problem. So, that was huge! I was kinesiology taped the entire trip, and using my makeshift Theraband brace parts of the trip as well.

I incorporated a walk into the travel. These are photos from my favorite trail for walking from when I lived in Ames. So fun to get to walk it again for the first time since before this last surgery, nearly a year ago.

Love the peaceful view and sound of water flowing!

I am walking well--both for exercise, and just getting around, daily tasks. My average daily step count is ~11,000, but the range is actually ~5000-23,000, depending on if a walking day versus swimming day, and what other activities throughout the day. Even with travel, I was getting more than 10,000 steps in. This was partially from taking walking breaks when stopping along the way with travel. But, also because I am back to parking farther away from entrances, taking the stairs, etc. It was exciting to finally get to have running gait checked...and be told it looks great! I was never a runner, no plans to become one with my iffy joints from Ehlers-Danlos syndrome. But, it was another milestone in this recovery journey. It was also exciting as my young nieces have been praying for me since before my first hip surgery that someday I would be able to run. God has answered their prayers! I am able to run! It is just not in best interests to do so beyond the little jogs across a street, or down a steep hill as I have been doing again for a while.

Travel day from recent trip.

As far as shoulder....making very slow, inconsistent gains with swimming, ability. However, it depends on if the shoulder is taped or braced or not. If not, I simply do not use it--it is too uncomfortable, flares up too many other things to attempt. The reason for the recent trip was another opinion for the shoulder. I felt the recent consult went very well. No final answers, but some new ideas for next steps, something else to try, see from there. I felt very much listened to, that my complexities were taken seriously, but not used as an excuse. I felt the previous surgeon listened, but had no new ideas, nothing to offer any hope, left me feeling stuck, stranded, out of options. This surgeon gave me the hope of something else to try to calm things down. depending on how things go, surgery may/may not be an option later, but he wants to be very sure before attempting surgery with me and complexities of what is going on. This inspired confidence that regardless of what happens, he will support me, if he recommends surgery confidence going in, if he recommends against surgery, confidence, we will have thoroughly explored options. Grateful.

Post from 10 months post-op left hip.

There are still a lot of unknowns. I am still recovering from multiple issues, still learning to manage numerous chronic medical conditions. But, applying my theme for surgery recoveries to all of life right now. This is not a race to see how fast I can recover, but a journey to see how well I can recover. It is worth being patient.

"Rejoicing in hope; patient in tribulation; continuing instant in prayer;" Romans 12:12 (KJV)

Copyright © 2018 by Only By God's Grace. All rights reserved.

Friday, April 20, 2018

Shoulder Support Tricks

This post is actually in response to a question I received about bracing my shoulder with a Theraband I had mentioned in my previous hip update post. I had recently discovered this as a trick to supporting shoulders. Desperation drives creativity and discovery and that is what happened in this case. I had been recommended to take a break from swimming and shoulder PT exercises to try to give my very painful and limiting left shoulder a rest, chance to calm down, more or less try to reset things. However, what actually happened was a massive flare of left shoulder, in turn neck became more painful, then right shoulder started to hurt again. After days of this, I woke in the night with left arm entirely numb, then the next morning neck sort of locked, not wanting to let me turn my head. That took heat, ice, heat, ice, repeatedly. I then started sleeping in a soft cervical collar that I have from previous injury to brace my neck at night. But, I could not figure out what to do for my shoulders. One suggestion from chiropractor was taking a Theraband, tying it in a loop, placing it behind my back when I went to bed, slipping my hands through so that the band held my arms down at my side, thus preventing me from moving and bringing them overhead at night. I am apparently a restless sleeper, sleep only my back, but often wake with arms overhead and elbows bent with acute angles that stretch ulnar nerve, creating cubital tunnel symptoms, but it is not cubital tunnel, just crazy EDS stuff. Anyway the Theraband worked! And, that gave me the idea to play around with it and see if I could figure out how to support my shoulder better. This is what I came up with. The band is essentially a figure 8. I can tie things behind my back, but this was already in a loop from using at night, so tried slipping on left arm up to shoulder, then with right hand giving one twist to the band behind my back and sliding right hand in and sliding band up to right shoulder. If too tight, it can pinch off circulation or nerves. With just a little stretch, it gives decent support! The band shown is one of my older latex-free bands. My physical therapist compared once and thought it was equivalent to a regular green Theraband. Thus, medium resistance. I usually wear it over a shirt, so it is not in direct contact with skin.

New fashion statement: Orange Theraband "brace" and blue kinesiology tape

I am trying to add shoulder exercise back in as recommended, but it is becoming very clear that the shoulder lacks actual strength, thus neck and back are compensating for it. (Atrophy easily seen in this previous post. The break from shoulder exercise has certainly not aided that issue.) The Theraband brace has supported very nicely for walks, PT exercises, daily tasks, etc. I rarely use it long at a time, but it helps give my neck a break. I also find kinesiology tape very helpful for supporting my shoulder, but also trying to help retrain neck and back to stop compensating. The above photo shows the tape on shoulder and up neck, but there is also a strip down my back on that side. Kinesiology tape is what provides huge aid with swimming, PT, living life. I would be taped all of the time if possible, but too long and it loses effect. I also have this little problem of adhesive sensitivity and can only stand so much before reactions get worse. My other shoulder support tricks include placing left hand in pocket of hooded sweatshirt--that serves sort of as a sling, and using an infinity scarf as a make-shift sling. Neither of these work as well, and scarf "sling" creates the elbow/ulnar nerve issue if done very long. But, they are welcome reprieve for my neck at times.

Scarf "sling"

Necessity is the mother of invention and desperate need certainly makes me more creative in finding solutions for problems.

Copyright © 2018 by Stef. All rights reserved.

Wednesday, April 18, 2018

9 Months: Thriving!

I am already 9 months post-op right hip scope, getting closer to a year. My left hip is approaching two years post-op. Both are doing well overall. I will not say 100%, but so much better than prior to surgeries. I can do pretty much everything I could before. I finally feel confident in the ability of my hips to handle normal load and work. I have been easily forgetting I had surgeries for quite some time, but would still favor one or both hips a tad, or move in a modified manner. I am now back to half running on the stairs, jogging across intersections when out walking in the neighborhood, doing 4.5-mile walks in just over an hour, averaging over 10,000 steps per day, with some days over 15,000 steps and 40 flights of stairs. Not too bad for being post-op both hips, multiple other issues! I am excited to be back to this level of consistent ability!

Walked total of 6.5 miles outside, 20,000+ steps!

Easy warm-up on elliptical

This makes it sound like life should be getting easier, ability back to normal. However, shoulders are both flared, had been on enforced break from shoulder PT exercises and swimming. Slowly allowed to add back exercises, then swimming. Adding back PT exercises has been surprisingly difficult. It is as if my shoulders forgot how to work completely, neck and back flared even worse from even more compensation. Back in turn flared up left hip--it still has strength and ability but is sore. Anyway, swimming is so far going well. And, feels amazing to be back in the water again!  I have had to start out slowly, but shoulders both handled it! This was swim a lap, walk a lap, repeat, but by doing this, I was to do a half mile (18 laps) of each! Most recent attempt, not so great and stopped earlier than planned as shoulder was just too sore and I was afraid of re-injury beyond current scenario. I had tried swimming two laps, then walking one lap, but after a few cycles of this and having to keep strokes more mixed up than usual, gave up and went back to swimming a lap, walking a lap. I was hoping to add a couple more laps of swimming, but had to stop at 18 laps. The water itself still felt great. The following day my shoulder/neck was sore, but eased up after a walk outside with shoulder braced with a Theraband. (I had discovered shoulder lacks strength to support itself, so my neck tries to support it. I have also discovered all sorts of options for make-shift braces, slings, supports for shoulders.)

The Ehlers-Danlos syndrome remains a challenge to learn how to manage. I feel as if the rest of my life is going to be a domino effect of joint after joint giving out. The partial answer to preventing this is strengthening the muscles to better protect the joints, but we have been doing this for years--even prior to diagnosis. I sometimes feels as if my body is 80, though I look 25 ish, but am in reality in between. Currently sleeping in a cervical collar at night to support neck, keep it from moving too much while sleeping. Using Therabands to support arms/shoulders to hold them in place, try to decrease incidence of my arms/hands going numb. Compression shirt to support shoulders, back, compression shorts/leggings to support low back, hips. Kinesiology tape to support shoulders, help retrain neck and back to stop compensating for shoulders. But, keep reacting to tape.

There is a lot to be grateful for and this is what I am choosing to focus on. There are a lot of gains in ability with respect to the hips. I am very grateful for this, especially in light of the difficulties I have encountered along this recovery. I am thriving with respect to how well my hips are doing, what they are capable of, my confidence in ability. I am grateful for all who have supported me in getting to this point. I am aware both hips still have some healing and recovery ahead, but feel hopeful.

9 months post-op left hip.

4/20/18 edit: added hyperlinks to post describing Theraband shoulder brace/support.

Copyright © 2018 by Stef. All rights reserved.

Tuesday, April 17, 2018

Easy Tomato Soup Recipe

I grew up having tomato soup with grilled cheese sandwiches. I still love this combination but my body does not love canned soups. I just went without....until this idea. This is just as fast and easy as canned soup.

Easy "Homemade" Tomato Soup
1 can (6 oz) tomato paste
1 1/2 cups chicken broth
1/2 teaspoon onion powder
1/4 teaspoon garlic powder
pinch black pepper
pinch celery salt
4 tablespoons (1/2 stick) butter
salt to taste
1 1/2 cups milk

Heat all ingredients except milk together, whisking to mix. Add milk last, heat through.

This recipe can be easily multiplied. I have made a double batch and I am sure it can be tripled just as easily. This can be made on the stove top or in the microwave. I sometimes do not add the milk at all, but rather add milk to preference when serving.

The amounts of chicken broth and milk are based on preference. All chicken broth and no milk works great. If no chicken broth, it may work better to use 1 cup of water for the first step, then stir in 2 cups of milk later. I also sometimes do not measure how much liquid I add, so sometimes the soup so thicker, or thinner than other times. If I add milk too early it curdles.  The soup is still OK and tastes fine, just looks weird.

Copyright © 2018 by Stef. All rights reserved.

Cheesy Garlic Biscuits Recipe

It seems like it has been a while since I have posted a recipe.  I am still creating new recipes, modifying older recipes, plus have never typed up all of my regular recipes in the first place. This recipe is something I had made a variation of before, but could not find my notes on what I did. So, I experimented and made the recipe up again. The result was amazing!

Cheesy Garlic Biscuits

2 cups whole wheat flour
1 tablespoon baking powder
1 teaspoon garlic powder
1/2 teaspoon salt
2 cups (8 oz) shredded cheddar cheese
1/2 cup (1 stick) butter
1 egg + milk to make 1 cup

1/4 cup (1/2 stick) butter, melted
1/4 teaspoon salt
1/2 teaspoon garlic powder
2 teaspoons dried parsley

Stir together dry ingredients, then add cheese.  Melt butter. Beat egg in a glass measuring cup, then add enough milk to fill to 1 cup.  Add melted butter and egg/milk mixture to dry ingredients and mix. Drop by heaping spoonfuls onto cookie sheet. Bake ~12 minutes @425. Remove from oven, brush tops with melted garlic butter. Return to oven and bake an additional 3 to 5 minutes or until golden brown.

These are amazing fresh from the oven. They make a great side for soups or stews. Or, they can make a great egg sandwich in place of toast, regular biscuit, or bagel, etc.

Copyright © 2018 by Stef. All rights reserved.

Thursday, March 22, 2018

Today: Personal Victory!

I know I just posted an update. However, I was pretty discouraged with the shoulder scenario--even though hips were doing well. I have been in a massive flare--far beyond normal for flares, miserable, fighting to find something positive in the midst of the mess.

Today was gorgeous. This evening, I went for a nice walk with my sister and cousin. The walk was along the top of the dam along the lake near where my family lives. This has always been my favorite place to walk here as you can almost forget you are in the middle of the city. We walked the full length of the entire dam (~3.75 to 4 miles?). I ran part of it--very short distance, carefully, not full speed. But, it felt amazing! (This is first run in over a year, and first time walking this path in a few years!) I have had such a rocky recovery with the shoulder issues, move, acute injuries after the accident, etc. The walk/run this evening was such an encouragement! Grateful!

Holmes Lake!

Copyright © 2018 by Stef. All rights reserved.

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.