This is a bit late. I had it mostly written, but things got crazy. I am now three months post-op left shoulder and it is doing really well! I am so grateful and relieved. In the past month, more activities have been added back, PT rehab advanced, etc. I saw my surgeon right at 3 months and he is pleased with strength, range of motion, etc. He has no concerns. He said my shoulder will continue to make progress for several more months, but more slowly. The stiffness with internal rotation is completely normal and internal rotation is usually slowest to come back. He also cleared me to start trying to use my arm with swimming!
I had been dreading the travel for surgeon follow up for 6-week post-op check. It was a rough trip, but I survived. However, back pain never calmed after that trip, but rather has continued to worsen. Thus, I was dreading this trip even more. My dad offered to drive me! Even with him driving, being able to ride with seat fully reclined, it was not a pleasant trip. But, it was also very clear I would not have gotten through it if I had tried on my own. So grateful he was available and willing!
I also saw the physical therapist I have seen to check hips before hip surgeon appointments. This was a problem-solving mission. I was pretty sure hips were fine, but back and SI joint pain so severe, so similar to some of the compensation from pre-op hips, that I wanted the perspective of someone who was not dealing with the entire mess, who knew me, knew hips, knew Ehlers-Danlos syndrome complexities, etc. She was so helpful! She could listen to me tell about the overwhelming, overlapping issues, check what my body was communicating, then help prioritize next steps based on her observations, what she knows of EDS. So, grateful that hips got another clear report and confirmed that I can still tell (usually) difference between joint pain and muscle compensation.
There is a lot going on. I have had numerous specialist appointments, more MRIs, other testing, still more to come. I have been given partial answers, but we are still working on sorting things out. I am desperately hoping we can get any additional testing that is needed done as soon as possible so we can proceed with next steps for treatment. I am trying so hard to find the positive, but the reality is that I am not doing well and do not feel well.
Copyright © 2018 by Only By God's Grace. All rights reserved.
Saturday, November 24, 2018
Monday, October 8, 2018
Shoulder Rehab Progress: 2 months post-op
Two months has sure gone by quickly! The past month has been challenging. Rehab is going well, my shoulder is recovering and healing well. However, difficulties with insurance led to taking a break from physical therapy out of necessity. We are trying to touch base base every couple of weeks to make sure I continue to make progress, do not lose ground.
Today is exactly two months since surgery. Today was also first physical therapy appointment in 2.5 weeks. I was not sure how it would go as not sure how well I am able to keep forward progress on my own. Also, my shoulder has been more achy lately, but so has the rest of my body.....rainy weather, getting colder. The appointment went well! He is pleased with my range of motion and strength. Strength is advancing nicely. Range of motion is not progressing as quickly, but no concerns at this stage as it is nearly normal ranges. This was such a relief to hear and so encouraging.
I saw my surgeon for 6-week post-op check at 5.5 weeks post-op. He was very pleased with how I am doing, how well my shoulder is healing, how well incision scars look. This was encouraging to hear! Also, I drove the entire distance myself. It was approximately 900 miles round trip and I did entire trip there, part way back same day, then the final part the next morning. My shoulder handled things fine. My back not so much. Still recovering, but it may also be partially post-op tiredness, pain flare.
In spite of the flare, my shoulder is regaining a lot of ability it had lost due to pain prior to surgery. I am actually using that arm! I can walk without my arm being braced or taped and it does not hurt! I can use both hands to lift and carry things. I have to be careful, but as long as I am, my shoulder does not hurt! I am sleeping so much better than prior to surgery, too. I can get regular shirts and even light compression tank tops on and off normally! I had not done so for months prior to surgery--rather have lived in tank tops because I can step in and pull them up like pants. Super easy. Pre-op difficulties and finding solutions meant that post-op was not that bad as I had already figured out quite a bit. Still, it is exciting to be regaining ability I have not had for months. I am grateful and relieved.
I am still not allowed to use my left arm for swimming. Thus, I am still only kicking laps in the pool. However, I ditched the kick board. Legs are still primary source of power, but I am moving right arm a bit to try to mimic more normal motion. Making this shift, plus that it has been weeks now of kicking only, means I am getting faster. I am hoping that by the time I am cleared to try gentle arm motion, that my legs are strong enough to do the work, allowing arms to just go through the motions until my left arm and shoulder are stronger, ready to actually work.
Overall activity has been decreasing over the past month. This is a result of flare--pain is high, fatigue has returned, still worsening. I simply do not have the capacity that I had. This is not hips or shoulder limiting, but lacking the actual energy. Surgeries have usually resulted in a severe flare of fatigue, higher pain around one month post-op. We now figure it is MCAS (mast cell activation syndrome), causing flares. We took precautions with surgery and the first few weeks went incredibly well. But, I still hit a flare around five weeks post-op. It should ordinarily be improving again, but thus far, only seems to be worsening. Previously, this has been addressed with prednisone burst/taper to break the pain cycle. However, we still have no date on next surgery and allergist managing MCAS does not want to risk prednisone close to another surgery. Although, I would argue that if we don't, my body will not be ready to withstand another surgery anyway.
It has been a challenging month, but most of the challenges have been related to other chronic issues, rather than surgery or recovery. It is frustrating when working so hard to get through each day, to then also have to fight what can feel like huge battles to get the medical care needed. Primary care physician and shoulder surgeon had both given new orders for physical therapy, only for PT to be denied when they tried to authorize it. I have fought insurance battles before. But, they are exhausting, draining. Additionally, we are working on trying to sort out other issues, figure out how to prioritize, and what to do. The result is I have been overwhelmed with everything. I am tired. It is requiring more effort to keep my focus on what is going well, to trust fully in God, knowing He is sustaining me.
"From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I." Psalm 61:2 (KJV)
Copyright © 2018 by Only By God's Grace. All rights reserved.
Today is exactly two months since surgery. Today was also first physical therapy appointment in 2.5 weeks. I was not sure how it would go as not sure how well I am able to keep forward progress on my own. Also, my shoulder has been more achy lately, but so has the rest of my body.....rainy weather, getting colder. The appointment went well! He is pleased with my range of motion and strength. Strength is advancing nicely. Range of motion is not progressing as quickly, but no concerns at this stage as it is nearly normal ranges. This was such a relief to hear and so encouraging.
I saw my surgeon for 6-week post-op check at 5.5 weeks post-op. He was very pleased with how I am doing, how well my shoulder is healing, how well incision scars look. This was encouraging to hear! Also, I drove the entire distance myself. It was approximately 900 miles round trip and I did entire trip there, part way back same day, then the final part the next morning. My shoulder handled things fine. My back not so much. Still recovering, but it may also be partially post-op tiredness, pain flare.
In spite of the flare, my shoulder is regaining a lot of ability it had lost due to pain prior to surgery. I am actually using that arm! I can walk without my arm being braced or taped and it does not hurt! I can use both hands to lift and carry things. I have to be careful, but as long as I am, my shoulder does not hurt! I am sleeping so much better than prior to surgery, too. I can get regular shirts and even light compression tank tops on and off normally! I had not done so for months prior to surgery--rather have lived in tank tops because I can step in and pull them up like pants. Super easy. Pre-op difficulties and finding solutions meant that post-op was not that bad as I had already figured out quite a bit. Still, it is exciting to be regaining ability I have not had for months. I am grateful and relieved.
I am still not allowed to use my left arm for swimming. Thus, I am still only kicking laps in the pool. However, I ditched the kick board. Legs are still primary source of power, but I am moving right arm a bit to try to mimic more normal motion. Making this shift, plus that it has been weeks now of kicking only, means I am getting faster. I am hoping that by the time I am cleared to try gentle arm motion, that my legs are strong enough to do the work, allowing arms to just go through the motions until my left arm and shoulder are stronger, ready to actually work.
Overall activity has been decreasing over the past month. This is a result of flare--pain is high, fatigue has returned, still worsening. I simply do not have the capacity that I had. This is not hips or shoulder limiting, but lacking the actual energy. Surgeries have usually resulted in a severe flare of fatigue, higher pain around one month post-op. We now figure it is MCAS (mast cell activation syndrome), causing flares. We took precautions with surgery and the first few weeks went incredibly well. But, I still hit a flare around five weeks post-op. It should ordinarily be improving again, but thus far, only seems to be worsening. Previously, this has been addressed with prednisone burst/taper to break the pain cycle. However, we still have no date on next surgery and allergist managing MCAS does not want to risk prednisone close to another surgery. Although, I would argue that if we don't, my body will not be ready to withstand another surgery anyway.
It has been a challenging month, but most of the challenges have been related to other chronic issues, rather than surgery or recovery. It is frustrating when working so hard to get through each day, to then also have to fight what can feel like huge battles to get the medical care needed. Primary care physician and shoulder surgeon had both given new orders for physical therapy, only for PT to be denied when they tried to authorize it. I have fought insurance battles before. But, they are exhausting, draining. Additionally, we are working on trying to sort out other issues, figure out how to prioritize, and what to do. The result is I have been overwhelmed with everything. I am tired. It is requiring more effort to keep my focus on what is going well, to trust fully in God, knowing He is sustaining me.
"From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I." Psalm 61:2 (KJV)
Copyright © 2018 by Only By God's Grace. All rights reserved.
Friday, September 7, 2018
Shoulder Rehab Progress: 4 weeks/1 month post-op
I am four weeks post-op shoulder, nearly one month post-op. This past week has been some better. For one thing, being back in the pool has helped immensely! My shoulder is calming down, gaining better motion, the rest of my body is calming down, etc. I strongly suspect that if I had been allowed to be in the pool earlier, we might have avoided some of the shoulder stiffness and soreness and some of the global flare. My neck and back are still pretty flared, easily irritated. For now, just grateful I can be in the pool now and that it does help so much! I swam laps until the day before surgery, was cleared to kick laps with a kick board at three weeks post-op, not allowed to use surgical side arm at all yet. However, in the first week of adding back kicking, already back up to a mile of consecutive laps! It is slow, but I can do it and it feels great! Pretty excited and encouraged.
9/5/18: 4 weeks post-op
Some new milestones! I had a physical therapy appointment at four weeks post-op. We added more active motion and some weight! It may only be 1-pound and 2-pound weights, but it is progress! Passive ROM work by PT stretching things out is some better, but remains very uncomfortable in some positions. He commented that it felt good--meaning better than it had been. I retorted it did not feel good--meaning it still sort of hurts. I have only been to the pool three times since being cleared to submerge shoulder. the first time was with waterproof bandages still as a precaution. However, the last two times, no bandages. Last time, I was able to kick an entire mile with no breaks! Hips are doing fine. It was not fast, but I was amazed I could do it. I knew from second time that I could do total of a mile, but that had been pretty broken up. This time, I just started with a goal of a half mile, but since that felt great, then just kept going....for a full mile! Pace was not that great, but I did not care. So excited to have been able to kick a full mile and have it feel good!
I can get the SI joint belt on by myself. I can get regular t-shirts on/off by myself. The "off" still makes me stop to think, fear getting stuck, but I can do it, albeit slowly. Still mostly living in tank tops as easy. It is also easy to layer a lightweight hoodie over the top if need the warmth.
9/7/18: almost 1 month post-op (tomorrow)
I had another physical therapy appointment today, with physical therapist being pleased with progress and how things are going. My shoulder is gaining strength, range of motion. It is still weak, and a little stiff. However, pretty normal for this stage of recovery, nothing concerning. He asked if surgeon had said anything regarding when I'd be ready to work. No. Plus, we think I am heading into more surgery, still. We ended up discussing how to keep me progressing with shoulder rehab through another major surgery. I have second opinion consult next week, see shoulder surgeon the following week and need his input on when he thinks the shoulder is ready.
My back has been so uncomfortable that I pretty much have to keep moving. The rainy weather has made things challenging for walking, but desperation means I have walked in the rain this week. Yesterday, I had planned to swim but the pool was closed for repairs. It was a gorgeous day and not raining! So, I went for a walk! I am back to pre-op pace and distance with walking again! Walked again later as back just hurt and walking helps loosen it up. Then, later yet, my sister proposed looking at the flooding, so we went for a walk together, taking the time to really look at things, take photos. We went as far as we could until the path was under water. We could have gotten further if we had gone up to the road, but we knew eventually that would be under water too. The driving entrances into the park are all barricaded.
Overall my shoulder is doing well! My other shoulder is staying pretty calm in spite of working for both. My hips are doing great! But, my neck and back and just angry, irritated with entire situation. I have been back in compression shorts for quite some time--one of my early skills, was getting compression shorts on with one hand. I am now back in the SI belt as well and that does help some. We have been taping, are experimenting with different ways to tape, but surgery is a MCAS (mast cell activation syndrome) flare trigger and my skin is more reactive, thus we have not been able to tape as much.
I am grateful recovery is going so well thus far. Just the last day or so, find that I feel pretty normal, am using the arm more, though it is still restricted.
Copyright © 2018 by Only By God's Grace. All rights reserved.
9/5/18: 4 weeks post-op
Some new milestones! I had a physical therapy appointment at four weeks post-op. We added more active motion and some weight! It may only be 1-pound and 2-pound weights, but it is progress! Passive ROM work by PT stretching things out is some better, but remains very uncomfortable in some positions. He commented that it felt good--meaning better than it had been. I retorted it did not feel good--meaning it still sort of hurts. I have only been to the pool three times since being cleared to submerge shoulder. the first time was with waterproof bandages still as a precaution. However, the last two times, no bandages. Last time, I was able to kick an entire mile with no breaks! Hips are doing fine. It was not fast, but I was amazed I could do it. I knew from second time that I could do total of a mile, but that had been pretty broken up. This time, I just started with a goal of a half mile, but since that felt great, then just kept going....for a full mile! Pace was not that great, but I did not care. So excited to have been able to kick a full mile and have it feel good!
This is kicking only, but pretty exciting for soon post-op!
Also, pretty impressive weekly total for 3-4 weeks post-op.
Not too bad for a single day just shy of 4 weeks post-op!
Reality is, my body needs to move.
Yes, I am sleeping a lot! My body is working hard to recover.
Love what this t-shirt says in light of post-op shoulder restrictions!
I can get the SI joint support belt on and tight by myself!
Also, loved getting back in the pool! Waterproof bandages as precaution.
Yes, still using kinesiology tape to try to calm neck and back.
I can get the SI joint belt on by myself. I can get regular t-shirts on/off by myself. The "off" still makes me stop to think, fear getting stuck, but I can do it, albeit slowly. Still mostly living in tank tops as easy. It is also easy to layer a lightweight hoodie over the top if need the warmth.
9/7/18: almost 1 month post-op (tomorrow)
I had another physical therapy appointment today, with physical therapist being pleased with progress and how things are going. My shoulder is gaining strength, range of motion. It is still weak, and a little stiff. However, pretty normal for this stage of recovery, nothing concerning. He asked if surgeon had said anything regarding when I'd be ready to work. No. Plus, we think I am heading into more surgery, still. We ended up discussing how to keep me progressing with shoulder rehab through another major surgery. I have second opinion consult next week, see shoulder surgeon the following week and need his input on when he thinks the shoulder is ready.
My back has been so uncomfortable that I pretty much have to keep moving. The rainy weather has made things challenging for walking, but desperation means I have walked in the rain this week. Yesterday, I had planned to swim but the pool was closed for repairs. It was a gorgeous day and not raining! So, I went for a walk! I am back to pre-op pace and distance with walking again! Walked again later as back just hurt and walking helps loosen it up. Then, later yet, my sister proposed looking at the flooding, so we went for a walk together, taking the time to really look at things, take photos. We went as far as we could until the path was under water. We could have gotten further if we had gone up to the road, but we knew eventually that would be under water too. The driving entrances into the park are all barricaded.
The partial daily summary is from yesterday--had to keep moving.
The weekly summary is the past week. Not too bad!
Photo of part of Holmes lake taken from the top of the dam.
Part of trails under water, parking lot no longer is, but clearly was.
Sign posts on the beach are now in the lake.
Overall my shoulder is doing well! My other shoulder is staying pretty calm in spite of working for both. My hips are doing great! But, my neck and back and just angry, irritated with entire situation. I have been back in compression shorts for quite some time--one of my early skills, was getting compression shorts on with one hand. I am now back in the SI belt as well and that does help some. We have been taping, are experimenting with different ways to tape, but surgery is a MCAS (mast cell activation syndrome) flare trigger and my skin is more reactive, thus we have not been able to tape as much.
I went swimming (kicking) again! We are trying a different way of taping.
Tan lines from taping shoulder pre-op. Also, no waterproof bandages anymore!
Tan lines from taping shoulder pre-op. Also, no waterproof bandages anymore!
I wore the t-shirt to PT as it seemed appropriate--he agreed.
I am grateful recovery is going so well thus far. Just the last day or so, find that I feel pretty normal, am using the arm more, though it is still restricted.
Copyright © 2018 by Only By God's Grace. All rights reserved.
Wednesday, August 29, 2018
Shoulder Rehab Progress: 2 & 3 weeks post-op
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.
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.
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.
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.
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
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
Topping
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.
Cheesy Garlic Biscuits
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
Topping
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!
Copyright © 2018 by Stef. All rights reserved.
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.
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.
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!
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.
Copyright © 2018 by Stef. All rights reserved.
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.
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 Recipe
Enjoy!
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.
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.
Copyright © 2018 by Stef. All rights reserved.
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
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.
Enjoy!
Copied from here:
*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.
Christmas
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.
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.
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