I wrote the 2-week update at two weeks, but had a rough day and never got it finished and posted. So, I am combining weeks. Also, I had an interesting realization....I am regaining ability to drive for the third time in a year, was cleared to be in the pool again for third time in the past year, fourth time in 13 months. And....hoping third time is the charm!? The first time I lost ability to walk, I became grateful for every step as I relearned how to walk. The first time I lost ability to drive, I was so excited to regain the ability. Thus, I do not take skills, abilities for granted. It is difficult to keep losing, having to work to regain the same things over and over again. However....so grateful I am regaining, not permanent loss at this point!
Two Weeks
I am two weeks post-op today. It has been a rocky week and a rough day. My shoulder has been more sore and PT could tell today that it was more stiff and I was more hesitant and reactive with having it moved. Today was first time trying very basic active motion and it went OK, but oh, my arm felt like dead weight. I am cleared to walk more as pace is nearing pre-op pace, but duration and distance are still less than pre-op. Incisions are not ready to be submerged yet....but, when I was asking PT how big of concern when I am just asking to walk in the pool, I have waterproof bandages, and I was in the pool with incisions submerged five days post-op hip, he actually agreed with me, had already wanted me able to be in the pool earlier since water aids in overall management of everything, plus aids rehab. The other item that is waiting on incisions to be well-closed, is restarting NSAID. After watching how much I was struggling today, and after he felt how much more stiff things were, he said go ahead. He thinks since I have been on it with past surgeries, am full two weeks post-op, it is not a big concern, I clearly need help.
Three Weeks
Today is three weeks post-op. And, steri strips are gone! I had pulled them one off of one incision yesterday knowing the incision looked fine, but PT checked and pulled the rest off this afternoon. He officially cleared me for pool, including submerging incisions! We both agreed I should continue to use waterproof bandages just to be safe, but he thinks incisions are good to go. Also, just getting into the first most basic isometric exercises. Shoulder is surprisingly stiff, sore again after starting to ease up later last week after restarting NSAID. PT can tell how stiff it is and how uncomfortable for me. He is hoping more pool work will help with that since my body has typically done better in water. I am hoping so as well. I am also hoping getting back to more of the activities I was doing before will help calm some of the more global flare. The shoulder is feeling better than pre-op, but has less ability and when PT pushes limits of allowed range of motion, it is not pleasant. I am sleeping longer and better than pre-op. Grateful for sleep!
Why the silence, delayed updates? Well, I found out right at two weeks post-op that I need another major surgery. I had really hoped shoulder would be last surgery for a while. So, I was taken by surprise, caught off guard, feeling overwhelmed. Nothing is scheduled as all involved know my body has healing and recovery to do for shoulder before we consider anything else. The tentative plan is get shoulder surgeon's thoughts on what he thinks is reasonable time frame for my body to recover from shoulder without compromising recovery at 6-week post-op check. Then schedule next surgery accordingly. In the meantime, scheduled for second opinion with another surgeon for the proposed surgery. (This at recommendation of one of my other doctors who pointed out every surgery is complex with underlying connective tissue disorder, thus second opinion simply makes sense.) Working on coming to terms with the fact my time line for goals has again been altered.
I am grateful for what is going well. The shoulder is healing, incisions are closed without some of the issues encountered in past. I have support as I work to rehab my shoulder, manage ongoing recovery for the rest of my body, and prepare for more surgery. I am making gains with physical activity ability! I am walking at near pre-op pace and distance. I am slowly adding back what hip rehab exercises are doable without interfering with recovering shoulder. I can do more daily tasks. I can drive--at least locally. I can walk in the pool and do hip rehab exercises in the pool, was even allowed to do a tiny bit of very simple shoulder work. I was just cleared to try doing more gentle shoulder exercises in the pool, try kicking with kick board! Have not tried yet, but hopeful.
Copyright © 2018 by Only By God's Grace. All rights reserved.
Wednesday, August 29, 2018
Saturday, August 18, 2018
Shoulder Rehab Progress: 1 week post-op
Hard to believe I am already more than one week post-op shoulder arthroscopy. The surgery went well, no surprises, not too involved. Recovery is going well. But encountering other challenges, so it has been an overwhelming and at times discouraging week.
First PT went well! Good motion, no actual pain, though I sure knew when it was reaching end of comfortable range of motion. PT thinks this recovery will go as well or better than hips! Optimistic!
I am sleeping better than pre-op, as pain is less than pre-op. Also, in early stage of healing, so more tired. I am able to be weaning from the sling, but still not allowed to do anything with the arm/shoulder.
I also happen to be 13 months post-op right hip, 25.5 months post-op left hip. PT commented that hips are doing better than anticipated considering travel, surgery, broken routines, etc. That was encouraging! We have officially shifted to shoulder rehab, though hips will still be addressed as needed.
So grateful! God is good!
Copyright © 2018 by Only By God's Grace. All rights reserved.
First PT went well! Good motion, no actual pain, though I sure knew when it was reaching end of comfortable range of motion. PT thinks this recovery will go as well or better than hips! Optimistic!
I am sleeping better than pre-op, as pain is less than pre-op. Also, in early stage of healing, so more tired. I am able to be weaning from the sling, but still not allowed to do anything with the arm/shoulder.
Ten days post-op, just back from a walk,
plus summary for past week, not too bad!
plus summary for past week, not too bad!
I also happen to be 13 months post-op right hip, 25.5 months post-op left hip. PT commented that hips are doing better than anticipated considering travel, surgery, broken routines, etc. That was encouraging! We have officially shifted to shoulder rehab, though hips will still be addressed as needed.
So grateful! God is good!
Copyright © 2018 by Only By God's Grace. All rights reserved.
Friday, July 20, 2018
One Year: Grateful!
I made it! One full year since the surgery on my right hip, and just over two years since surgery on my left hip. I am pretty much back to normal ability--my overall endurance and energy level are more limiting than my hips are. I saw the physical therapist and my hip surgeon on the one-year anniversary of surgery. The therapist was pleased with how I am doing, my ability, etc. She said for being one year post-op, I am doing well, for also have Ehlers-Danlos syndrome, I am doing very well, for also being several months out from a car accident, I am doing excellent, and told me my surgeon would be pleased. When I saw my surgeon, he was very pleased with how well I am doing! He has no concerns. No need to follow-up. He would like to see me, get new x-rays, just check things, but said anytime in the next 1-3 years is fine. Such an encouragement and relief to hear this, even though it was anticipated. Local physical therapist had been telling me muscle tone was better--more strength, atrophy resolved, less spasm and tension, etc. The evening of the 4th of July, my sister, friend and I had gone over to the nearby lake and climbed to the top of the dam to sit and watch fireworks over the city--amazing view! Anyway, instead of taking the bike path that angled alongside to the top, we just went straight up the side--half running! When it down-poured rain, we ran down the side to the car. Would never have dreamed of being able to do this a year ago! PT said if my hips can handle that, then I am good to go! He was anticipating a good report from surgeon, and I did get a good report! This is a huge answer to prayer! I have been a complex case all along for various reasons and my hip surgeon is actually the surgeon I saw for second opinion. So grateful he could see through the mess my first hip was to what it could be. That he supported me through every part of pre-op, surgery, rehab, evaluating my other hip, figuring out timing on it, repeating surgery and rehab process. He and his team have gone above and beyond! I have also had amazing physical therapists who did the hands on, daily rehab with me. So grateful for them, their expertise, patience, willingness to support me and problem-solve no matter how complicated things were.
The trip itself was a definite test of my ability and endurance. I am so thankful my sister was able and willing to go with me and drive! We covered 1000 miles, five medical appointments, time with friends, etc., in less than 48 hours! Fun, profitable, but exhausting! So grateful for safety traveling, for how well all of the appointments went, for those who showed us hospitality, or helped in other ways, to get to meet others.
My shoulder, and ensuing compensation issues, is the biggest limitation at present. I did also see shoulder surgeon on this trip, and we scheduled surgery. So, although the hip recoveries are going well, it looks as though I will be starting shoulder surgery recovery soon. I am sure hips still have more recovery, but this sort of feels a bit like closing down the aggressive hip recovery phase, moving into hip maintenance and more aggressive shoulder surgery, recovery, rehab phase.
I have far better ability at one year post-op right hip, than I did one year post-op left hip, but that was because right hip was painfully limiting. Now, hips do not limit me. A year ago I could barely walk, but was swimming daily. Now, walking is nearly unlimited, but swimming is severely restricted. Last year, at one year post-op left hip, I already knew I was scheduled for surgery on right hip. This time, at one year post-op right hip, I am already scheduled for surgery on my left shoulder.
So grateful to so many who have supported me on this journey! I know it is not over, but am so thankful for the progress! More hopeful now than prior to both hip surgeries, going into shoulder surgery with hope.
Copyright © 2018 by Only By God's Grace. All rights reserved.
The trip itself was a definite test of my ability and endurance. I am so thankful my sister was able and willing to go with me and drive! We covered 1000 miles, five medical appointments, time with friends, etc., in less than 48 hours! Fun, profitable, but exhausting! So grateful for safety traveling, for how well all of the appointments went, for those who showed us hospitality, or helped in other ways, to get to meet others.
My shoulder, and ensuing compensation issues, is the biggest limitation at present. I did also see shoulder surgeon on this trip, and we scheduled surgery. So, although the hip recoveries are going well, it looks as though I will be starting shoulder surgery recovery soon. I am sure hips still have more recovery, but this sort of feels a bit like closing down the aggressive hip recovery phase, moving into hip maintenance and more aggressive shoulder surgery, recovery, rehab phase.
I have far better ability at one year post-op right hip, than I did one year post-op left hip, but that was because right hip was painfully limiting. Now, hips do not limit me. A year ago I could barely walk, but was swimming daily. Now, walking is nearly unlimited, but swimming is severely restricted. Last year, at one year post-op left hip, I already knew I was scheduled for surgery on right hip. This time, at one year post-op right hip, I am already scheduled for surgery on my left shoulder.
So grateful to so many who have supported me on this journey! I know it is not over, but am so thankful for the progress! More hopeful now than prior to both hip surgeries, going into shoulder surgery with hope.
For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. But if we hope for that we see not, then do we with patience wait for it. Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God. And we know that all things work together for good to them that love God, to them who are the called according to his purpose. Romans 8:18, 25-28 (KJV)
Tuesday, June 19, 2018
11 Months: Persistent Progress
Hard to believe that my right hip is now 11 months post-op, so close to a year! And, left is nearing two years post-op. Crazy how fast time flies, yet how slowly it creeps along at the same time. Last year, as left hip neared one year post-op, I was thinking it was nearing its recovery period, as I had been told full recovery takes at least a year. Well, once I was diagnosed with Ehlers-Danlos syndrome, my surgeon modified my recovery time frame, telling me to expect each hip to take 1.5 to 2 years for full recovery. Thus, I have just thought of myself as rehabbing my first hip still along with the second one. There really is not a lot of significant progress to report compared to last month, and one thing my surgeon had counseled me at some point on this journey, was early on to look at progress across a month, later to view progress across 3-4 months, but also not to compare between hips--recoveries could be similar, or different. That has been helpful advice to keep in mind. There may not be a lot of progress in the past month, but I know I am still getting stronger! I am nearing my limits of endurance/what my body can handle, before reaching limits of what my hips can handle, so I cannot really test limits much with respect to hips. So grateful both of my hips are doing so well!
Shoulder update, since it is what is holding things back. I had a guided injection into the left shoulder joint a few weeks ago. Wonderful, blissful, pain-free reprieve for a few hours....then miserable, far worse than prior to injection. This is more or less normal response to injection, but magnified this time as contrast was used and my body seems to find contrast irritating, especially injected directly into a joint. The shoulder surgeon and I had discussed this at my appointment, and when I expressed my concern regarding contrast, he ordered an ultrasound guided injection to avoid contrast. So grateful! So, what happened, then? Well, shoulder surgeon is long distance, so he ordered the injection to be done locally for me. The rest is a long story, but ultimately I decided I wanted the person sticking a needle into my shoulder to be comfortable with how we were proceeding, so agreed to contrast. I was really hoping it would be OK. Bur, oh my, it was so miserable for over a week--the longest it has ever taken cortisone to take effect. I was not sleeping, not using the arm, etc. But, I survived! Cortisone is in effect now. However, with the shoulder so sore for so long. plus the plan being shutting shoulder down for a break the first week after injection, then gradually add back shoulder PT, but no swimming for a month, my body was in a global flare by the time the injection started to really work. I am still working through this flare. My body pretty much needs to swim, but not allowed to do so with arms, yet. However, surgeon and PT OK'd me to "swim" with a kick board, and this is what I am doing--part of why hips and legs are getting stronger! They have to work harder in different ways than if using arms with swimming, or only walking, PT rehab. Right shoulder and arm are getting stronger from doing everything. Left shoulder and arm are really pretty pathetic. That shoulder lacks the strength to support itself, thus if not taped, my neck tries to support my shoulder, which flares neck, which flares back, which flares left hip, which refers pain down left leg, eventually flares right hip and right shoulder. Hence global flare. My left shoulder does not even like holding the kick board to swim, so I hug the board to me with my right arm crossing entire width of board and gripping left side of board with right hand, then let left arm just sort of drag along. It works. I "type" one-handed when not taped. I live in tape as much as I can....have tan lines from where tape usually is. I am discovering ways to calm/prevent as severe of skin reactions to tape! But, my skin still needs breaks to recover even from milder reactions, plus just to let it breathe. Without tape, I do not use my shoulder/arm much--they will not work right, hurt if I try. (Hurt even if I do not try). The break days typically fall over weekends, thus weekends are really uncomfortable, often miserable. I plan my rest day to be when tape is off, since I will not be able to use the arm well anyway, all activity uncomfortable.
I had not gotten my hair cut since right before the right hip surgery last summer. It had grown out to shoulder length or so curls. Long enough to have to find ponytail elastics and put it in a ponytail out of the way. It had not been that long in years. With shoulder so awfully miserable after injection, I went and got my hair chopped off into short pixie cut again. So much easier and so much cooler in this summer heat! I had not intended to let it go this long, but about the time hips were ready to sit long enough for a hair cut, I was in a car accident, and not able to sit anymore. Once I did regain ability, I was sort of curious to see how long it would look OK just growing out from a prior pixie cut. (I had figured that would not grow out gracefully....but it did! Of course, having some natural curl helps hide oddities.) Anyway, it was getting to be too much hassle, so finally chopped it off. I had to take in a photo from right after surgery to show what it "normally" looks like when we cut it. Since I was still in brace and on crutches and they were visible in photo, that led to questions....and memories. I have come so far in the last 11 months!
A year ago, I was nearing one year post-op left hip. I was scheduled for right hip surgery. I was no longer able to walk much so was swimming nearly daily, both shoulders were the strongest they had been in years. Over the past year there has been a lot of change in ability, with gradual return to my normal routine of swimming and walking alternating days, with at least one rest day a week. Then, after this shoulder injection I could not swim, so was walking daily--accrued 22-some miles of intentional walking (either for exercise, or concentrated walking to get somewhere--PT, library, store, etc.) the first week of June. Now, able to "swim" without using arms, just kicking, holding onto a kick board. Thus, able to shift back to my normal routine of walk three days a week, "swim" three days a week, alternating days to give my body variety, plus chance to rest between types of activity. This along with gradually advancing shoulder PT is helping to slowly calm this flare. But, it has been a discouraging process. It often seems like I barely recover from one issue, surgery, or situation, before the next one is either scheduled, or just happens--many times overlapping. I need to choose to keep in mind that this is temporary. One day, all will be well!
Shoulder update, since it is what is holding things back. I had a guided injection into the left shoulder joint a few weeks ago. Wonderful, blissful, pain-free reprieve for a few hours....then miserable, far worse than prior to injection. This is more or less normal response to injection, but magnified this time as contrast was used and my body seems to find contrast irritating, especially injected directly into a joint. The shoulder surgeon and I had discussed this at my appointment, and when I expressed my concern regarding contrast, he ordered an ultrasound guided injection to avoid contrast. So grateful! So, what happened, then? Well, shoulder surgeon is long distance, so he ordered the injection to be done locally for me. The rest is a long story, but ultimately I decided I wanted the person sticking a needle into my shoulder to be comfortable with how we were proceeding, so agreed to contrast. I was really hoping it would be OK. Bur, oh my, it was so miserable for over a week--the longest it has ever taken cortisone to take effect. I was not sleeping, not using the arm, etc. But, I survived! Cortisone is in effect now. However, with the shoulder so sore for so long. plus the plan being shutting shoulder down for a break the first week after injection, then gradually add back shoulder PT, but no swimming for a month, my body was in a global flare by the time the injection started to really work. I am still working through this flare. My body pretty much needs to swim, but not allowed to do so with arms, yet. However, surgeon and PT OK'd me to "swim" with a kick board, and this is what I am doing--part of why hips and legs are getting stronger! They have to work harder in different ways than if using arms with swimming, or only walking, PT rehab. Right shoulder and arm are getting stronger from doing everything. Left shoulder and arm are really pretty pathetic. That shoulder lacks the strength to support itself, thus if not taped, my neck tries to support my shoulder, which flares neck, which flares back, which flares left hip, which refers pain down left leg, eventually flares right hip and right shoulder. Hence global flare. My left shoulder does not even like holding the kick board to swim, so I hug the board to me with my right arm crossing entire width of board and gripping left side of board with right hand, then let left arm just sort of drag along. It works. I "type" one-handed when not taped. I live in tape as much as I can....have tan lines from where tape usually is. I am discovering ways to calm/prevent as severe of skin reactions to tape! But, my skin still needs breaks to recover even from milder reactions, plus just to let it breathe. Without tape, I do not use my shoulder/arm much--they will not work right, hurt if I try. (Hurt even if I do not try). The break days typically fall over weekends, thus weekends are really uncomfortable, often miserable. I plan my rest day to be when tape is off, since I will not be able to use the arm well anyway, all activity uncomfortable.
I had not gotten my hair cut since right before the right hip surgery last summer. It had grown out to shoulder length or so curls. Long enough to have to find ponytail elastics and put it in a ponytail out of the way. It had not been that long in years. With shoulder so awfully miserable after injection, I went and got my hair chopped off into short pixie cut again. So much easier and so much cooler in this summer heat! I had not intended to let it go this long, but about the time hips were ready to sit long enough for a hair cut, I was in a car accident, and not able to sit anymore. Once I did regain ability, I was sort of curious to see how long it would look OK just growing out from a prior pixie cut. (I had figured that would not grow out gracefully....but it did! Of course, having some natural curl helps hide oddities.) Anyway, it was getting to be too much hassle, so finally chopped it off. I had to take in a photo from right after surgery to show what it "normally" looks like when we cut it. Since I was still in brace and on crutches and they were visible in photo, that led to questions....and memories. I have come so far in the last 11 months!
A year ago, I was nearing one year post-op left hip. I was scheduled for right hip surgery. I was no longer able to walk much so was swimming nearly daily, both shoulders were the strongest they had been in years. Over the past year there has been a lot of change in ability, with gradual return to my normal routine of swimming and walking alternating days, with at least one rest day a week. Then, after this shoulder injection I could not swim, so was walking daily--accrued 22-some miles of intentional walking (either for exercise, or concentrated walking to get somewhere--PT, library, store, etc.) the first week of June. Now, able to "swim" without using arms, just kicking, holding onto a kick board. Thus, able to shift back to my normal routine of walk three days a week, "swim" three days a week, alternating days to give my body variety, plus chance to rest between types of activity. This along with gradually advancing shoulder PT is helping to slowly calm this flare. But, it has been a discouraging process. It often seems like I barely recover from one issue, surgery, or situation, before the next one is either scheduled, or just happens--many times overlapping. I need to choose to keep in mind that this is temporary. One day, all will be well!
"For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal." 2 Corinthians 4:16-18 King James Version (KJV)
Copyright © 2018 by Only By God's Grace. All rights reserved.
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.
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.
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.
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.
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.
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.
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.
New fashion statement: Orange Theraband "brace" and blue kinesiology tape
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!
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.
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.
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