Reflecting Over 20 Years

This date (October 24, 2002) is one my body will not let me forget. I have written about this date and what happened in the past. The last time I wrote about it was five years ago. I finally had some answers at that point. Enough has happened over the past five years that it is interesting to reflect back again now. On this date 20 years ago, my life was changed in a split second by a random stranger. The car I was driving was struck from behind by another car. The other driver was not paying attention. I was fully stopped, waiting to make a turn. The other car was traveling at full speed. The impact totaled both vehicles. The impact also introduced me to never-ending chronic pain. I already had a history of non-healing injuries, but nothing that matched neck and back pain that never gave me a break. Chiropractic, physical therapy, and other treatment strategies only provided partial relief. I longed to know when I would get better, back to normal. The initial prognosis was three months to give my body time to recover. Three months came and went and I was not better. After I passed the 6-month mark, I was told it was chronic pain and it might not ever get better. I was not prepared to even contemplate never getting better. I clung to hope that someday, somehow, it would get better. Over the years, I gradually learned to accept that pain is part of my life, part of my normal daily existence. Over the years, it also became very plain that there was something else underlying my inability to recover fully from the accident. I not only had chronic pain, but also chronic fatigue, numerous allergies, various other issues. After several years, things sort of calmed into a manageable state and I moved out of state for graduate school. The stress of graduate school slowly, but surely, undermined the control I had gained over pain, fatigue, and other issues. I ended up with massive pain and fatigue flares, allergies out of control. I also needed five surgeries during the time I was in graduate school. The wear and tear on my body was such that I completed my Master's degree, but withdrew from school just shy of completing my doctorate degree. I have still never been able to complete this final degree. Instead, I had to accept that my body cannot handle the stress of graduate school and academia. My final semester of graduate school, I finally was given partial answers to the medical chaos that had been my existence for so long. I was diagnosed with classical Ehlers-Danlos syndrome (EDS) and mast cell activation syndrome (MCAS). There was suspicion of dysautonomia, but I was not diagnosed with neurocardiogenic syncope (NCS) for another 1.5 years. 

Five years ago, I finally better understood why I could not heal, why I could not fully recover. What I did not know when I wrote five years ago was that another car accident was in my future in just a couple of weeks (November 8, 2017). Once again, a random stranger struck the vehicle I was driving with such force that both vehicles were totaled. I was in shock that it had happened....and that it had happened again. This time I was t-boned by someone who ran a red light. I was 3 months post-op my second hip surgery (right hip), at the time and my hip surgeon had me get checked in the ER to rule out fractures. I checked out alright, but pretty much lost the ability to walk more than a few steps at a time. However, my entire body hurt so much I could not manage crutches again, either.  It was a long and scary several months as I tried to recover and questioned if I'd be able to recover, and if so, to what extent. I was clinging to the Lord to just get through each monument of each day. 

The blessing of knowing about the underlying conditions this time, meant I was able to be more proactive and I better understood what was happening. Gratefully, after several months, I actually returned to previous baseline without additional repercussions. There have been several more surgeries since then, but for EDS-related issues and not due to the second car accident. 

Fast forward another five years, and I have gained better management of the various chronic medical conditions. I am not pain-free, I do still have intermittent fatigue, allergies, propensity to almost pass out if not careful, etc. But things are managed well enough that I was able to start working again three years ago and I am still going strong. All of this is only in God's strength and by God's grace. He has carried me through many difficult years. He is good. He loves me. 

Similar to my written thoughts several years ago, I never would have asked for chronic pain. I still would love for the pain to end. However, I would not ask to have the last 20 years of my life back pain-free. The reason is still the same. God has taught me so much more of Himself through the difficulties of pain, disappointments, inabilities, disabilities. 

Romans 8:26-28 (KJV)
26 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.
27 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.
28 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.

https://www.biblegateway.com/passage/?search=Romans+8&version=KJV

Copyright © 2022 by Only By God's Grace. All rights reserved.

2019 Bible Reading Plan

Yes, I know it is July 1, not January 1. The reality is, I only recently, in the past weeks, figured out a feasible plan for this year. I normally follow some plan to read through the entire Bible in a year, plus read a devotional as well. I keep a journal to jot notes of what I am learning. I have done this since 2000. Each year has the same overall plan, but the details vary. Well, last year started out on track as normal. Shoulder surgery threw a bigger interference than I had anticipated. I had stayed on track after hip surgeries, surely I could after shoulder surgery. That was not the case. Instead, I found inability to use my left arm at all really interfered with holding a Bible, devotional book, notebook, writing, etc. I have been getting Streams in the Desert via email for years, but I like my print copy version better. I started just reading the emails. I tried to catch up with Bible reading later after surgery once I could hold books and take notes better again. I was so far behind, that it was daunting. I kept working at it anyway. I had an inpatient surgery at not quite four months post-op shoulder. I planned to do my reading in the hospital, but knew it might be via phone only. What I did not expect was being so sick that I could not keep up with basics via phone, an emergency later surgery, moved to ICU, in the hospital a total of three weeks. I was so weak, I had no energy for anything. Even once home, it took time to regain my strength. It was also already the new year with no time to catch up or plan. Energy went into recovery. I sort of floated along for a while. I went back to reading Streams in the Desert on my phone. I knew I needed more, but could not figure out what to do. I did not want to pick up where I left off last year as I would just feel behind. Then, I thought maybe I could pick up where I left off last year and use the rest of this year to finish. But, I have more surgery coming. It is still challenging to read, write. I also did not want to get trapped in feeling like I had to complete something and working so hard to finish that I missed the message. With prayer, I came up with the following plan. I am still reading Streams in the Desert via email via phone. Additionally, I am now also reading Daily Light on the Daily Path and My Utmost for His Highest, also both via email via phone. My Utmost for His Highest has a link at the end of each day to a One Year Bible plan daily reading, with a passage from both Old and New Testaments. This appealed to me as it is all electronic, can all be done with my phone, it is a different format for Bible reading, and my three favorite devotionals. The Bible reading directs to Bible Gateway, has the exact passages linked, is using New American Standard Bible version. This fits in with my past reading plans, but is different. There is no urgency for completion. I have missed a couple of days and it is alright. The journaling portion I am still struggling with. I had the brilliant idea of copy/paste screen shots of the readings, but on day two of this, Evernote informed me I had used over 50% of my storage. That ended that experiment. The next idea was to copy and paste the links from emails into Evernote, then jot notes from there. However, technology is not really my strength and I cannot figure out how to get the links from the emails on my phone. I can on computer, but that sort of defeats the purpose. Thus, for now I have a reading plan, but no journaling plan. I can use the names of the devotionals, or passage from Scripture as headings in Evernote and jot notes underneath, but would really like to be able to link directly. Grateful to have a plan that works for me at this time.

Copyright © 2019 by Only By God's Grace. All rights reserved.

Shoulder Rehab Progress: 4 to 6 Months Post-op

My shoulder was doing really well and looked to be making gains through four months. However, another surgery just days shy of four months post-op shoulder left me struggling just with the new recovery, thus all shoulder rehab on hold.

I was in the hospital at four months post-op, had been home from the hospital a week or so at five months post-op, but still pretty weak and tired. Finally feeling better around 6 months post-op, so finally working on blogging and updates.

Six months post-op shoulder finds me less capable in some respects than at three months post-op. However, my shoulder is better in other respects. It is hard to describe. I have greater confidence in my shoulder's ability, but it is not as strong. I did restart physical therapy late January. Therapist pleased that my shoulder and hips came through the ordeal as well as they did. That was encouraging to hear.

Small boost of encouragement recently. I was at the pool and a physical therapy assistant who had worked on my right hip early post-op a year and half ago was there. I had not seen her at the clinic in a long time, so asked if she still worked there--yes, but another location. As we chatted, she said I am doing really well for post-op so much and that swimming and pool work is the best thing I can do! That was reassuring!

Where am I at with activity? Walking laps in a hallway at home, swimming laps, pool walking, rehab in the pool, some simple rehab on land. Core is still resisting waking up, but will activate fine in water. I can grab and lift a full gallon of milk from the fridge with my left arm without issues. I can reach overhead, but have some difficulty, especially if early morning and have not stretched yet. The swimming is 50/50 freestyle, backstroke, so lots of shoulder work and it handles that. I do swim a few laps of breaststroke, but not kicking as more concerned for hips with the speed of the kick and range of motion used than I am for shoulders. Hips can do whip kick, but with current atrophied state, not trusting things. Just because I *can* do something does not mean I *should* do it.

Copyright © 2019 by Only By God's Grace. All rights reserved.

Hip Rehab Progress: 15 to 18 months

15 Months Post-op

My second hip had surgery when my first hip was a little over a year post-op. So, I have never known what the normal course of hip recovery is beyond a year. Well, my shoulder had surgery when my second hip was a little over a year. Thus, I am not sure I will ever know what normal progression is. Besides, my body has never liked to follow normal patterns anyway. I had not really decided if I was going to keep updating on hip recovery or not. Both hips are doing so well. However, a few things are making me think it might be interesting to update. First, it is now five years since my first hip became so severely painful I could barely limp around. Yes, it took two more years to actually figure out it was my hip. Secondly, the back pain is back to higher levels again after being somewhat better. Old compensation patterns are not only resurfacing, but getting stronger again. However, hips are still fine. No hip pain. No indication of giving way. None of the other signs I later learned were blatant hip pain. What is going on now? No one knows. EDS and MCAS both flaring.

Creativity ever to the rescue--wearing both SI joint support belt and the waist strap to my hip brace as a back brace. I have gotten far more use out of my hip brace as a back brace than I ever did as a hip brace. Physical therapist was impressed with my resourcefulness, suggested another option for back brace, but said what I was doing worked well.

18 months post op right hip (2.5 years post-op left hip)

I clearly never got the 15 months post-op post published. So I am just adding to it. 18 months post-op left me rather behind. December had two major surgeries, a lengthy hospitalization, and I ended up losing most of my strength, endurance, having to start over with rehab. I had prepared for surgery as I always do--stayed on top of exercise and rehab, went into surgery strong. However, unanticipated issues arose and second emergency surgery became necessary and much longer hospitalization than planned. Hence, global atrophy in spite of having worked hard to go into surgery strong. (But, it could have been much worse if I had not been strong for surgery.) Hips are still both fine, but lost their supporting muscles, thus not able to do much. The back pain was horrible in the hospital. I hardly needed pain medication for the surgeries, but my back was awful. Physical therapy at the hospital was coming to take me for walks (I was not allowed out of bed on my own because of fall risk, numerous IVs, lines, tubes everywhere). At one point, I asked for tips to help with my back and they were so nice to check postures, how I was getting in/out of bed, with me explaining I was protecting abdominal incision, but also protecting left shoulder. I was told I was moving well, doing all I should. However, I was given tips to try to help lessen back pain. It still took trial and error, but the final days were less miserable. Although, that may be also being less limited, more able to move enough to shift position some on my own.

I am not able to wear most of my compression clothing or braces because I am still swollen and healing from the abdominal GI surgeries. However, a nurse gave me a binder that can be used as an abdominal binder or a back brace, or both! I can also get the SI belt on and it sits low enough not to bother too much, but is uncomfortable as some of my scar goes that low. I also discovered that the elastic/Velcro straps for the cooling pad for my cold therapy machine works well for back support! Because they are narrower than most support belts/braces, I can better position the straps in ways that are less pressure on still swollen abdomen, yet still get some back support. Anyway, it is helpful to have some aid with back support. I may need to try kinesiology tape again, too. I do have my TENS/NMES units back out and using them. Also back to icing, heat for back. A physical therapist helped explain something I have always wondered. This is that my body either loves or hates compression. It either feels amazing, or I cannot stand it and have to get it off. She said when it feels good, it is because my body needs support. When it is uncomfortable, it is because of an inflammation issues. So, my abdomen not liking pressure is because of ongoing inflammation from surgery and infection even though healing. My back needs support.  

Back to hips. My left hip is fine, nothing seems to phase it. Right hip is tight and a bit sore at times. I am doing tummy time again to gently stretch out hip flexors. I discovered I can do TENS at the same time as tummy time so that gets both done without stressing me any further over how much time goes into rehab and recovery.

All rehab is in the pool for the most part. Physical therapist had me focus on pool work after the accident last year when struggling, and he is having me focus on pool work now. The goal is to get me strong enough to do more on land again. My body thrives in water. The water feels good, supports me, lessens pain, gives positive feedback, gives gentle resistance, works my whole body gently. My core is shot from surgeries, trauma. It will not activate on command--isometrics, or trying to engage for abdominal brace just do not happen. But, my core will engage and work in the pool. So we are using swimming and pool walking to help with shoulders, hips, back, and core! I can walk laps in a hallway at home and I have walked outside a couple of times on unusually nice days. Walking distance is pretty normal, but pace is not back to pre-op these last surgeries. Still, grateful for progress!

Copyright © 2019 by Only By God's Grace. All rights reserved.

Shoulder Rehab Progress: 3 months post-op

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.

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.

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.

Ten days post-op, just back from a walk,
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.

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.

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)

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

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!

"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.

10 Months: Ongoing Progress!

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

May 18, 2018 (10 months post-op)

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

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

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

Love the peaceful view and sound of water flowing!

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

Travel day from recent trip.

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

Post from 10 months post-op left hip.

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

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

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

Shoulder Support Tricks

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

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

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

Scarf "sling"

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

Copyright © 2018 by Stef. All rights reserved.

9 Months: Thriving!

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

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

Easy warm-up on elliptical

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

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

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

9 months post-op left hip.

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

Copyright © 2018 by Stef. All rights reserved.

8 Months: Positively Discouraged

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

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

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

After a walk outside! Yes, shoulder is taped.

Elliptical a few days ago after already walking outside.

Sitting criss cross--more comfortable, better ROM.

Kinesiology tape: helps support my shoulder.

Taped shoulder, but also bony prominence showing due to atrophy.

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

Showing atrophy more clearly with tape off.

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

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

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

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

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

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

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

Copyright © 2018 by Stef. All rights reserved.

7 Months: Progress!

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

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

So much beauty!

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

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

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

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


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

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

Copyright © 2018 by Stef. All rights reserved.

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.

5 Months: Setback

I am 5 months (22 weeks) post-op right hip, 17.5 months post-op left hip, 2 full years post-op exploratory surgery, and 6 weeks post car accident. The four-month update communicated the various challenges that ended that month, started this month. Back to tedious early stages of rehab, but different context.  The hip is stronger than right after surgery, more capable in some ways, less in others, badly flared, but the rest of my body is also flared or sore from exacerbation of existing issues and new injuries, so my entire body is trying to heal and recover, thus nothing left to compensate with. Entire body working so hard to heal, support itself, that fatigue is severe, limiting.  No endurance for anything. I went from being in decent physical condition, to unable to do much of anything, wearing out in minutes, barely able to walk, etc.

Some days I feel like I will never regain enough functional ability to do anything. It seems as if I have procedures lined up in queue, waiting for me to be fit enough. Every surgery, I think maybe it will be last, or at least for a while, and the last few, have known the next was coming before rehabbed from that one. Same case now.

My hip surgeon wanted the hip checked more thoroughly, but realized the challenges of getting me all that distance, thus asked for shoulder surgeon to check things out. This was done a couple of weeks ago at four weeks after the accident.  Things were beginning to calm down, I was starting to regain more ability, but still nowhere near where I had been before the accident.  The appointment went really well.  He had my x-rays from the ER after the accident and said those look fine.  He checked right hip pretty thoroughly--range of motion, where things were tender, etc.  Checked left hip as well and commented that left definitely moves better than right.  However, he thinks this is just a massive flare from the accident, and is not concerned at this stage.  He also checked shoulder again--think he is still trying to determine just how symptomatic the various issues are, thus which ones truly justify surgery.  He again told me he will not consider proceeding with the shoulder surgery until I have had time to heal.  My body is already dealing with too much, working hard to recover from the accident as well as still rehabbing from hip surgery. He wants to recheck things in 6 weeks, make sure hips are still calming down, I am still making progress, see how I am doing, how things are going.

I am very slowly regaining ability, slowly able to do more, slowly pain is calming. Grateful for progress. Still not back to the ability I had before the car accident, but hoping this is just a setback and not something that creates permanent issues. I am still relying on compression clothing to support my body (compression leggings to support low back, hips, and knees, compression shirt to support upper back, shoulders).  I am no longer needing the cervical collar for support, but chiropractors are taping (kinesiology tape) my neck for support.  That has helped immensely.  We have right hip taped now as trial and so far, really helping.  Taping left hip and shoulders is under discussion as well, but we are going slowly, seeing how my body responds. Thus far, no reactions to the adhesive, which is a minor miracle by itself. Oh, and when one is small, sometimes finding compression clothing small enough to actually provide compression can be challenging.  Girls' size medium works well!  Plus, less expensive.

I feel as if back in the tedious, time-consuming, tiresome stage from earlier.  Ability is limited, back to working on making even small gains. Last week was discouraging as full reality was setting in, still dealing with higher pain levels, extreme fatigue, loss of ability.  I had to consciously choose to focus on what was going well, each gain, etc.  This week has been a little better.  I am still tired and still wear out easily, still continuously medicated for pain/spasm, but finally making noticeable gains in rehab and ability. Also, less miserable from pain--medications do not eliminate pain, or even fully mask it.  Rather they decrease it enough to be more functional.  Early on, pain was high enough that even with medications, I was not particularly functional.  Pain has lessened enough that same doses of medications are more effective, but there is still constant pain.

My surgeon told me at 12 weeks not to compare between hips  I am not doing so intentionally, but it is hard not to with some things.  There are lot of things that I do not recall from last time, but there are a few key milestones I remember clearly.  One was being able to sit cross legged again--took longer this time in the first place, then lost the ability again after the accident and still have not regained it.  One was being cleared to walk for exercise--it was right around 5 months, early December last year.  Nowhere near that yet as still back to slowly advancing elliptical.  Another was being back to full pre-hip issues normal ability--by 7 months last time.  That may still be possible, but not counting on it or anything really at this point.  This hip has been flared pretty much the majority of its post-op rehab. I am just grateful to be making progress again.  But, this has been hard.  I have been reminded by providers that my body is recovering from a lot, to be patient and gentle with my body.  I need to keep expectations low, let my body heal.  They have also told me I am doing well with keeping a positive attitude in the midst of all of the challenges.  That was encouraging to hear!

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18

Post at 5 months post-op left hip last year.

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