Four Months

It is hard to believe that I am almost four months post op from the hip surgery already! There are times I even forget I had surgery, other than that my hip is so much better than it had been for years prior to surgery.  Wow!

I decided to try something different.  I have been struggling so much with the various medical issues out of control and the non-op, right hip getting worse.  I thought I would see if taking a break from writing would also maybe help me take a break from thinking about things.  However, it really made no difference.  I did not really think it would, but was at a point where anything was worth a try. I already know how to focus on other things and use distraction.  I was already trying to stay focused on other things, on what was going well, and rejoice in each milestone and indicator of progress with the left hip.  However, right hip continues to intrude itself upon notice. The left hip is still healing incredibly well and making excellent progress. For this I am very grateful.

I do still know what has happened each week. There is not much difference week to week anymore.  I think the majority of healing has taken place and I have regained the majority of normal range of motion and am regaining strength.  The full recovery takes about a year, so things are still healing, but less noticeable now.

14 Weeks: Turning Around
I am not really sure how things are going.  They are going better in some respects, not so well in others.  We have the medical situation turning around for now, finally.  However, it is with extreme measures that are not sustainable long term.  There still is no long term plan.  I am grateful things are getting better for now and trying to just stay in the moment and not think about what happens next. I am still amazed at how well things are going after surgery in the grand scheme.  That hip seems to still be doing really well in spite of all of the recent challenges with other issues.

15 Weeks: More Firsts
It has been a while since I have really gotten to do or try much new.  Focus has been on regaining better control of things.  This past week I drove long distance for the first time since surgery.  I attended a conference for the first time since surgery.  I got to carry my littlest niece for the first time since surgery.  (I had gotten to hold her on my lap earlier).

The conference is one I have attended the last two years as well.  The first year, I sat near the front and managed to actually sit through entire sessions.  Last year, I sat in the back, sat on my back pillow, stood often, moved around.  This year was similar to last except that left hip (op side) was much better than last year, and right hip much worse than last year.  Left hip handles sitting longer, but right does not.  Left handles standing longer but right does not.  The problem with right not handling standing, is then I have more weight shifted onto left, which then tires out left hip faster and it gets sore. I was pleased to discover that after a full day of sitting, standing, left hip being sore, right hip being pinchy and painful, back and neck being sore and painful, that elliptical, PT exercises, and being in the pool helped calm everything down incredibly well!  I did need a couple of days just to recover once it was all over and I was home again.

16 Weeks: Changing Things Up
This was an interesting week.  After so much travel for the conference, I was home only a couple of days before back on the road again for another surgeon appointment.  This time, my sister came over and she did the driving!  So grateful! This appointment was more for problem solving since things had only gotten worse and I was struggling after the previous plan had not been followed when the local surgeon had declined to give the injection that had been ordered but without offering any alternative plan.  The result was that things kept deteriorating until I "crashed"--unable to cope effectively. Anyway, this appointment went well. He checked both hips and left hip is still doing great in spite of everything!  Plan is still the same as last time--stay on course with PT for the left hip and a cortisone injection for the right hip to calm it down, but this time his office will communicate directly with the local surgeon's office and hopefully coordinate care better and hopefully the plan will be followed and I will be able to get the injection. I had half hoped it would be decided that I did not need the injection and maybe there was something else we could try instead. I am not afraid of injections; on the contrary, I have had several and they have all been incredibly effective.  I simply prefer as minimal and non-invasive approaches as possible. I guess, right hip is too irritated for less involved measures.

All along, it has struck me as odd because right hip (non-op side) is still stronger than left hip (op side), but the left hip is tolerating things better than the right hip.  Well, at the appointment, it turned out that the left hip is now stronger in some respects than the right hip.  I had not known that. When I saw PT the next day, I was informed that the left hip is now the good hip.  Wow.  I knew eventually it would be a good hip, but for it to be "the good hip" at three months into a 1-year recovery was not anticipated.  I am not sure how much of this is because it is healing so fast versus that the other hip is deteriorating that rapidly, or a combination thereof. Still, it surprised me.  I am pleasantly surprised and grateful that left hip is still doing so well in spite of all of the challenges.  It has been discouraging how problematic the right hip has been and that its cannot seem to calm down no matter what we try, short of extreme measures. I think part of what has been so hard is that I cannot measure or see progress as well because as soon as left is cleared to try something, I am told that right will not be able to handle it so not to even try. Hence, it being very difficult to see or feel progress when still incredibly restricted.  I have to choose to remember that it is the right hip that is restricting things and that the left hip is doing well and regaining ability and freedom.

More firsts! I was cleared to try whip kick for breaststroke!  I am not really allowed to fully kick yet but OK'd to go through the motions slowly and carefully and gently hanging onto the side of the pool or a kick board! So, of course I tried--it went well.  It has been months.  Left (op side) hip felt fine! Right hip did not do so well.  Sigh. I was not surprised about that, but still disappointing.

17 Weeks: Still Persevering
This has been a bit of a rough week again.  For one thing, I am still waiting to get the injection for the non-op hip and it is still pretty irritated.  It was decided to leave the prednisone dose stable and not taper further until after I am able to get the injection.  Still, the dose has been tapered far enough that things are slipping again--across the board, not just the hip. With the taper other things are again reappearing.  I had noticed quite a few interesting observations over the years of prednisone bursts and tapers.  Prednisone essentially "fixes" everything.  We have no idea why.  I have been tested repeatedly for autoimmune issues, but always unequivocally negative. Are the other issues consequences from living with constant chronic pain? Thus, when prednisone decreases pain, other things resolve? Or, is something else going on?  When we decided to leave prednisone dose alone, it was partially because other issues were again surfacing as the taper progressed.  For now, the priority is getting hip pain under control.  However, we are watching the other things and depending on what happens, I may get sent back to more specialists again for additional work up. I really do not want to as diagnostic work can be draining and exhausting--physically, mentally, emotionally (and financially). I have been cautioned that I need to learn to not minimize things when discussing concerns with my various healthcare providers  However, minimizing is a deeply ingrained coping mechanism that I have always done and I honestly do not know how not to.  Also, I am trying to manage things as independently as possible and non-invasive as possible.  There are quite a number of things I am just watching on my own...and only mention once I become concerned or it seems to me to become relevant to something else we are trying to address.

Ever more and more I find myself forgetting I had surgery and thus find myself doing things accidentally that had been off limits after surgery.  I even find myself doing things I had not been able to do for months/years before surgery!

Something I wrote the other day:

Not quite 4 months post op and op hip is doing so well I keep forgetting that it had surgery and to be careful. I mentioned this to PT and that I am afraid of accidentally doing something and hurting it. She said at this point I am in less danger of doing anything serious even if I do something my hip is not quite ready for yet. I mentioned I will find myself sitting cross-legged without thinking about it--she was not concerned. She keeps having me try new stretches and things I have not been able to do for years and it is exciting to find I can do them now!!!! PT is pleased with progress. I am trying really hard to focus on recovery and how well op hip is doing. Otherwise, it is incredibly discouraging and frustrating how badly non op hip is doing and how limiting it is.

The non op right hip is starting to catch and feel stuck again.  It had stopped since the high dose prednisone a month ago. Sigh.

I have been thinking again over the past week. We are trying to protect the right hip.  With the left hip, I had no idea it was even the hip itself--thought the hip pain was compensation from my back.  It was years later we finally diagnosed the hip.  Thus, I was not protecting the hip at all.  I was continuing on with life the best I could.  I was limping, but able to get around.  The result was years of compensation, me further irritating things from not knowing enough to avoid some things. By the time things were accurately diagnosed, things were pretty bad and essentially it was too late anymore to avoid surgery as things were too far gone. (Did not stop me from trying to avoid surgery anyway.) With the right hip, I am more aware of what to avoid, what to do, what not to do. The right hip is not as bad as left hip was before surgery--for this I am very grateful! I am also very hopeful that the right will not need surgery. However, I do not want the right hip to get as bad as the left hip did before surgery.  Thus, trying to protect the right hip.  However, as I was thinking through how restricted I still am, I realized I am more restricted than much of the years before surgery.  It is not pain itself, but the goal of protecting the hip. Yes, if I overdo it pain reminds me, so pain is sort of a secondary indicator. I can live with some pain and restrictions--I have been doing so for 14 years already. However, once pain and restrictions get to a certain point, it is not really living anymore. It is surviving. I am honestly not sure if the current restrictions will calm down the right hip--so far, nothing is working. If not, then what is the point?  I do not want to live this restricted the rest of my life. I'd rather have surgery than be this restricted.  I do not want surgery--hence trying to protect the right hip.  I really do not know--need to ask about this and see. Maybe we are just protecting until injection? In which case, that does not help with trying to patiently wait until I can get the injection. Sigh.  Hence why I feel stuck so much at present. It is because I am stuck. This is also why I prefer managing as independently as possible--not having to wait on providers. I am not a patient patient.  I try to be, but it is so hard sometimes.

I am trying to live in the present and not worry about the future.  But, I am also trying to maintain an eternal perspective and not get caught up in the temporary challenges of the present.

2 Corinthians 4:16-18
Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal.

Copyright © 2016 by Steph. All rights reserved.

12 weeks: Stalled and Stuck

Supposedly, 12 weeks post op from this surgery is another milestone and other restrictions are supposed to lift.  But, with me we are still stuck and not making much progress.  The operative hip is feeling great, doing well.  PT told me it is healing well, regaining range of motion well, and also getting stronger, but the strengthening is going slowly because of how limited we are by the other hip not tolerating the strengthening exercises.  This is really discouraging.

PT is very creative, very resourceful. very supportive, but she told me the reason progress feels as if it has stopped is because we are stalled.  My right hip is still just not handling rehab for the left hip.  We are trying to protect the right hip but still strengthen the left.  It is weird in that the right hip is still stronger than the left hip after surgery and the atrophy from a month on crutches.  But, left hip can handle the various exercises and right hip cannot. Things have been shifted almost entirely to single leg on the operative leg to continue to strengthen it and give the other a break.  All exercises on both legs are being done in the pool to decrease weight bearing on the other hip.  As of later this week, possibly the other hip was no longer worsening?  I was restarted on NSAID late last week. That NSAID usually takes a few days to reach peak effect, so it should have been in full effect as of this week.  That was encouraging that something was finally helping some!  But, then later in the week I discovered that my body was not tolerating the NSAID this time.  It took me a while to even realize I was reacting as this was completely unexpected and had never happened with this medication before.  Thus, I had the hard decision to stop the NSAID. I honestly do not what alternatives exist from here.  It appears to me that remaining options without injections are either increasing oral prednisone again or going back on narcotic.  Neither of which I am excited about.  We had been trying to see if we could get me off the prednisone completely, and I did not even need narcotic very long after surgery. (Rather enlightening and puts things in perspective that right hip is more problematic than surgery was, and right hip is still not as bad as left hip was before surgery....)  It is not really feasible right now to get back to MN for an injection there even though there is a current order for the injection.  I already had difficulties driving and right hip only makes driving even harder yet.

It is getting ever more difficult, but I can still find and can still choose to focus on the positive and what is going right.  The repaired hip is still doing incredibly well!  This is a huge relief.  Especially since PT says she thinks it is starting to compensate now for the other hip.  I had noticed a few weeks ago when walking to class that the repaired hip still got tired and sometimes sore.  However, this week, when I walked to class, it did not get tired or sore--just felt normal!  However, the other hip did get tired and painful.  I feel as if I simply cannot win.  It is starting to seem impossible to be able to figure out how to fully support my entire body.  I am not giving up but getting ever closer to wanting to do so.  The medical situation is undermining everything else at present and stressors with school are further undermining medical situation.  Caught and trapped.

I am making progress in some things in spite of the right hip being problematic.  Swimming is going well and freestyle is back to normal--meaning I have to be super careful of my shoulder but both hips are handling kicking fine. Elliptical is going well and even the flared up, irritated, non op hip is tolerating that alright as long as I limit pace and duration.  Stationary bike is still OK--some days it is fine, others I have to cut it short because of non op hip.  I still cannot walk for exercise. Repaired hip was OK'd to try walking on land other than just to get around but the other hip is so irritated that I have not tried and am still doing all extra walking in the pool. I really want to go for a walk outside again but don't dare risk it right now.

I am very grateful for the support network I have.  I almost titled this week either "Crash Course" or "Collision Course" as it felt as if all aspects of life were going wrong, physically collided, and all of the pieces hit me at once and almost knocked me down. This had been building for a few weeks, but I still did not really see it coming to this extent and got caught off guard.  The few that I will let know when things are not going well went above and beyond to let me know they are there for me and will support me no matter what happens. It was difficult to acknowledge I needed help and to let others know, but needed to happen.

I have no idea what the future holds from here on any front right now.  But, I know the Lord knows and He has me right where He wants me and when He is ready to move me elsewhere He will let me know.  I need to trust Him, trust those supporting and counseling me.  I need to be willing to let go of my original ideas if that is where He leads.

I am still my limit-pushing self and Friday evening when I did my usual stretches and noticed where range of motion was at, I became curious as to whether I could sit cross-legged again.  So, I tried and this is the result.  Not too bad!

I do not normally post links. However, I think what I read this morning fitting for the current circumstances.  I also think the video link a friend had posted is also fitting.  I am not reading anything into either of them, just aware of how appropriate they are.

https://thepianoguys.com/portfolio/okay/

This Is Exactly What You Need to Hear Today - OKAY - ThePianoGuys

http://www.crosswalk.com/devotionals/desert/streams-in-the-desert-september-24th.html

When the Spirit Shuts a Door - Streams in the Desert - September 24

After they were come to Mysia, they assayed to go into Bithyma: but the Spirit suffered them not (Acts 16:7).

What a strange prohibition! These men were going into Bithynia just to do Christ's work, and the door is shut against them by Christ's own Spirit.

I, too, have experienced this in certain moments. I have sometimes found myself interrupted in what seemed to me a career of usefulness. Opposition came and forced me to go back, or sickness came and compelled me to retire into a desert apart.

It was hard at such times to leave my work undone when I believed that work to be the service of the Spirit. But I came to remember that the Spirit has not only a service of work, but a service of waiting. I came to see that in the Kingdom of Christ there are not only times for action, but times in which to forbear acting. I came to learn that the desert place apart is often the most useful spot in the varied life of man--more rich in harvest than the seasons in which the corn and wine abounded. I have been taught to thank the blessed Spirit that many a darling Bithynia had to be left unvisited by me.

And so, Thou Divine Spirit, would I still be led by Thee. Still there come to me disappointed prospects of usefulness. Today the door seems to open into life and work for Thee; tomorrow it closes before me just as I am about to enter. Teach me to see another door in the very inaction of the hour. Help me to find in the very prohibition thus to serve Thee, a new opening into Thy service. Inspire me with the knowledge that a man may at times be called to do his duty by doing nothing, to work by keeping still, to serve by waiting. When I remember the power of the "still small voice," I shall not murmur that sometimes the Spirit suffers me not to go.
--George Matheson

"When I cannot understand my Father's leading,
And it seems to be but hard and cruel fate,
I Still I hear that gentle whisper ever
pleading,God is working, God is faithful, ONLY WAIT."

Copyright © 2016 by Steph. All rights reserved.

11 Months: Preparing for Round Two

I am 11 months post op from surgery on my left hip and just recently saw my surgeon again, but for the non-op right hip this time.  Of course he checked left hip as well and it is doing well, no concerns. Although left hip is doing well overall, it is a bit sore/flared from compensating for a very painful, limiting right hip  We are not making much detectable forward progress as just trying to retain what strength and ability I have in spite of right hip not handling sitting, standing, walking, etc. The right hip is essentially similar set of issues as left was pre-op. Thus, we are now planning on surgery for my right hip.  This is not a surprise, but rather has been more or less suspected since around two months post op, but we were uncertain how I'd rehab from first surgery, if second hip would calm down, etc.

Thoughts on second hip surgery. I am not sure what to expect as I was told this time may be similar, or may be either easier or harder than last time.  A year ago, left hip was horrible--injection had worn off, but surgery not until July 1.  Right hip was starting to catch and was more painful than simple compensation seemed to explain.  But, I was afraid of hip surgery, hoping left hip scope was last surgery--at least for a while, and determined right hip was going to get through OK without surgery--refused to even consider it might need surgery. Although, gut instinct was it felt too similar to left.

Fast forward a year.  Left hip is doing great, surgery recovery has not been easy, but much easier than anticipated.  Left hip was pretty much back to normal ability a few months ago!  Then, injection for right hip wore off and it was back to misery.  I lost optimism of avoiding surgery on it, asked if MRI worth it in February--yes, but it took until April to be able to get it done.  By then, limping again, even on crutches one evening.  MRI confirmed the suspected labral tear, but also found a few surprises.  My initial reaction to thinking of another surgery was frustration to be facing such a major surgery again as we had just gotten me back to pretty much normal ability with left hip. It was so nice to be able to walk, sit, do things. Another surgery would knock me down again for months.  I knew pre-op last time that it was going to take time recovery and regain ability.  It did.  But, as I thought more about it, I then chose to look at things differently.  We had me back to full ability--my body had proved it is capable of healing from major surgery in spite of various complicating factors.  If it could recover well once, it can do so again. Then, as my right hip continued to worsen, I became more limited again, then left hip flared up, and I was losing ability again. Surgery became something I was hoping for and as soon as possible to try to help get things dealt with and allow me to regain progress again even if slowly.  I am no longer afraid of surgery as I have been through it, it was not as bad as anticipated, and has helped beyond what I had expected. I went from fearing and trying to avoid surgery, to hoping surgeon would recommend it and wanting to proceed ASAP.

There will be a few changes in how we handle things this time.  Even though my body is still the same, having confirmed the Ehlers-Danlos Syndrome, and still strongly suspecting Mast Cell Activation Syndrome, more precautions will be taken.  This includes greater support during the surgery itself, as well as more precautions afterward.  I am grateful for a medical team who knows how to handle these issues to support me for optimal outcomes!  Now, to figure out how to survive the next several weeks until surgery.  Prayer is greatly appreciated!

Copyright © 2017 by Steph. All rights reserved.

8 Months: Optimism

Here I am 8 months post op from hip surgery and finally feeling as if the end is in sight.  Things are going really, really well with respect to rehab.  The repaired left hip is at or beyond the ability it had prior to issues starting, not just prior to surgery.  I am amazed at what it can do and what it can handle. I can walk, sit, swim, do normal daily tasks, etc.  It will get sore at times as we are still increasing and advancing things in rehab, but it is just muscle soreness.  I have been told the hip has good strength and full normal range of motion again. The bothersome trigger points are gone, compensation issues lessening, gait better than it had been in years! The other hip is a different story.  It had been getting gradually worse again, the injection completely lost effect, and things are pretty challenging again.  I am being encouraged to keep walking and swimming, but with rehab we are shifting back to single leg exercises on op side again to give the other a break. It can still handle some exercises, but is becoming selective.   We want to try to keep it strong but without irritating it any more than it already is. Walking hurts, but I can still walk without limping. I do not like restrictions, or having to modify things, but also realize that this is necessary for long term.  It is worth it to me to decrease activity gradually in order to be able to keep doing some activity, than to push through at current level and lose the ability completely.  I used to call it a "controlled slide" before surgery with the left hip, as injections would let me increase ability temporarily for the duration the injection was in effect, and losing injection effects would find me again slowly backing down again. This is now what we are doing with the right hip and my shoulders.

I was finally able to get the left shoulder injected and calmed down!  So much better!  However, right shoulder has the same issues, and although PT told me she thought the orthopedic surgeon could inject two joints at the same time, I was told by the surgeon he could only inject one and I had to choose.  Difficult decision, but opted for left shoulder since it had been problematic longest and chose to optimistically hope right shoulder would maybe calm with time.  (More on this later....see further down.) Swimming pace and activities are still decreased to protect shoulder(s).  In hindsight, it almost seemed silly to only inject one shoulder when both cause trouble.  But, ever finding the positive side, realized this means I do still know my limits even when pain is out of the equation for one shoulder, as the other lets me know what both can truly handle.

This is a potentially dangerous thought track to follow, but I keep wondering what would have happened if we had just repaired the left hip three years ago shortly after the pain got severe.  Would the left shoulder have gotten injured two years ago?  Would the right hip have gotten injured a year ago?  Would the right shoulder have gotten injured several weeks ago?  All have been result of compensation issues.  Both the right hip and left shoulder were directly related to left hip.  Right shoulder (the second one) is probably from right hip getting worse.  I have underlying bone structure issues that make me more susceptible to impingement issues, but no one knew that.  There is no way to go back, I can only go forward from here.  However, it is worth thinking through what has happened over time from trying to keep going with injuries unresolved. I was told I am not a good candidate for surgery for either shoulder because of the underlying structure issues that are contributing to the problem.  I do not know what the plan is with the right hip.  I had been hoping to avoid surgery, and trying to focus on rehabbing the left hip and moving on with life, but right hip keeps intruding itself upon notice and I am becoming less optimistic.  I am really not sure how is best to manage the multiple issues without making things worse.

There have been a few more medication trial and error experiments that have only discovered more things that ether just do not help, or actually make things worse.  Pain issues are not particularly well managed at present. Sleep has become a major challenge again as well. Sleep has been almost non-existent some nights, broken and random other nights.  Just impossible to get comfortable.  Having left hip no longer painful at night for months now, left shoulder calmed down via injection has helped, but still have painful right hip, right shoulder, neck, back, etc.

Other adventures this month include a pinched nerve situation with pain radiating down my entire right arm. I knew it was a nerve issue, knew pretty much what to do, employed every strategy I could think of, plus what others suggested.  Battled all day long, nothing could do much more than take the edge off. Finally, by evening, called the nurse hotline seeking additional suggestions, and was promptly sent to the emergency room because it was arm pain and arm pain can in some cases mean bad things.  But, normal EKG ruled out cardiac concerns, doctor agreed with my guess it was a pinched nerve.  So anti-inflammatory and muscle relaxant injections and sent home.  Ever the optimist, I soon realized that the injections were helping not only the nerve pain in my arm, but also the shoulder and hip pain!   I slept that night!  Finally!  *Disclaimer: I do not recommend adding new pain issues just to get sent to the ER for injections for a couple of troublesome joints.  It is not worth it! Especially when the injections wear off within a day or so and pain gets out of hand again.*

A couple of days later at my regular appointment, PT checked the painful right arm/neck/shoulder and commented I'd had both shoulders injected?  No, I had only been able to get one done, and had chosen left shoulder, and was starting to rethink and regret that.  Sigh.  There was no way for anyone to know what was going to happen. It is challenging with this being dominant side arm.  I had always been grateful with the left shoulder that at least it was not dominant side....then right got bad too.  That was part of what made it difficult to decide which shoulder to have injected.  Left had been in bad shape longer, less optimistic of it calming down without injection, but right is dominant side and I use it more.

Whew!  Crazy month!  Lots of good progress with the recovering hip.  Loss of progress almost everywhere else, but that is what it is and I am grateful the hip is doing well in spite of other challenges. It is holding strong and not getting drawn back into the rest of the mess.  This is huge progress! The current mess possibly sheds insight into what happened that did flare up left hip a few months ago--flare elsewhere that caused compensation issues in the hip.  I remember being puzzled at the time at what seemed similar, yet different, to old patterns. This time is very similar to then except hip is not really involved this time. Huge progress!  From left hip seeming to be what undermined management of everything else before surgery, to left hip being able to withstand the effects of everything else being flared!  Wow!  The ER trip was actually just this past weekend, the injections have lost effect, things are challenging.  Not really sure from here, but hopeful we can figure something out.  If not, then learn to live with this as new normal until things change again. Hope is essential.

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 2 Corinthians 12:9

Copyright © 2017 by Steph. All rights reserved.

9 Months

Here I am nine months post op from left hip surgery, or three-quarters of the way through the year I was told at minimum for full recovery.  Things are still going incredibly well. I keep forgetting my left hip ever had issues, we keep trying things out of curiosity to see what it can do, and have yet to really find its limits. I can run a little bit, but have not done much as my body does not really like running in general, and my right hip dislikes running in particular.  Right hip still acts up, but each time it hurts with sitting, or walking more, or at night, etc. it reminds me that left used to hurt, but no longer does and has not for quite some time!

What can I do?  Pretty much anything.  What can I not do?  Really not that much. Crazy compared to early post op when so restricted and so little I could do and trying to find one new thing each day I could do.  I do still need to remember that just because I can do something does not mean that I should or that it is best. Now, I am consistently walking at old pace and distance, swimming laps, Pilates, careful yoga, running in the pool (can run on land, but non op hip does not appreciate it), left hip is fine to sit, stand, etc. All of this is pain-free! Pre-op, none of this was pain-free and definite restrictions for all. Right hip has definite limits for what it can handle.  But, I drove myself to and from MN not too long ago in one day and left hip did not even need ice!  Wow!  The rest of my body was not too happy with me, but I survived rather better than I expected.

I did have a PT appointment in MN recently as a sort of check after things had been iffy a few months ago, but she said left hip is doing great, right on track with expectations, and no concerns! Right hip is not doing as well, but that was no surprise.

Other challenges this month include still working on calming down the pinched nerve situation, new stomach pain issues, trying to mentally wrap my mind around new information in terms of diagnosing the underlying issues, a suspected cracked rib, the injection for my left shoulder lost effect, etc.  It has not been an easy month and I am so grateful that my left hip has continued to do well and even right hip has been somewhat calmer just from the amount of medication I have been on to deal with other new pain issues.

Overall, left hip is doing really well.  We are still working on strengthening it and addressing residual compensation issues, but these become less of an issue all of the time.  I think what has become the biggest indicator to me of how well things are going is the consistency.  Left hip is consistently pain-free and flare-free.  Left hip is consistent in what it can do and handle in terms of activity, sitting, standing, etc.  It is no longer the unpredictable mess of never knowing what it could handle.  Right hip is not at all consistent.  It has OK times, but it has very painful times.  It can handle things one day (or moment), but not the next.  This is more similar to left hip a couple of years before surgery or earlier post op during more intensive healing and recovery stages. As someone who has lived with chronic pain for so long I no longer know what pain-free is, no longer know what predictable is, it seems really odd, yet exciting, to have a pain issue actually resolve!  I do not think that has ever happened before.  I recall being really nervous about surgery and the possibility of it making things worse or not helping. I absolutely trust my surgeon and his team as well as my physical therapist, but do not trust my body. I have had such difficult surgery recoveries in the past, and my body is unpredictable in how it responds to so much.  My response to this surgery continues to surprise me.  So, so grateful for an excellent surgeon who saw through the mess that my hip was to what it could be and gave me the chance to get some semblance of a life back, for supporting me through all of recovery thus far, even when things got a little challenging a few months ago.  So, so grateful for an amazing physical therapist who is creative and resourceful and does not give up on me no matter how challenging things get. So, so grateful that my body has proven that when well supported and directed, it is capable of healing and recovering well from hip surgery!  So grateful!

Copyright © 2017 by Steph. All rights reserved.

Five Months

A few days ago marked both five months post op from the hip surgery and also one year post op from the last pelvic surgery.  I no longer have any idea how many weeks post op from the hip surgery I am--lost track of that quite some time ago.  I am still so grateful with how well both of these surgeries went and how recovery went for the one a year ago and how well the hip recovery is still going thus far! I had such hard recoveries with prior surgeries that these have been a pleasant surprise in comparison.  The hip surgery is a really long recovery and it is taxing my patience at times, but that is not even the recovery itself so much as the side challenges that keep coming up.

Things have been sort of up and down lately.  The injection for the non op hip is fully in effect and that hip feels normal--no pain and it will finally handle exercises!  At three months post op I had been told my op hip was now the good hip.  However, once we finally got the non op hip calmed down with the injection, now the hips sort of seem to be taking turns with which one is best.  The non op hip has fewer issues over all than the op hip, but the non op hip is still weaker than the op hip.  It is amazing how fast strength is lost.  There are also times that both hips feel "normal" (whatever that is), and I totally forget I even have hip issues!

I had been told to take a break from walking three months ago or so after the non op hip was being so recalcitrant and we could not get it to calm down no matter what we tried. I was then cleared to try walking again once the injection was taking effect, but then got hit with the adverse reaction to a new medication and that knocked things back another couple of weeks with rehab.  This week I finally got to try walking for exercise again!  I was told to start with only five minutes and if that went OK to increase to ten minutes.  I did 1/4 mile on the track to start--it was actually almost 7 minutes, but went fine, tried again a couple of days later and down to 5.5 minutes so tried longer distance a couple of days later and managed 10.5 minutes and an entire half mile!  And, neither hip hurt at all!  First time since long before surgery! It is nowhere the pace or duration I could do prior to hip issues, but I am so grateful to finally get to try walking again other than just what was essential to get from place to place.  Definitely progress!

Things have been slipping and more discouraging again on other fronts.  I am choosing to focus and be grateful for what is going well and not worry about the rest.

Copied from what I wrote a few days ago:

The hip surgery is a long, long recovery. It is going well overall, but it can be hard to be patient. I keep reminding myself that this is not a race to see how fast I can recover but a journey to see how well I can recover. This reminds me of my walk with the Lord, as well. He is molding me more into His image in His way and His time. I need to be patient and not try to rush the process. If the process includes pain and illness, then I need to view these as His gift to me and be grateful for them. His grace is more than sufficient.

"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

Copyright © 2016 by Steph. All rights reserved.

Patience, Perspective, and Persistence

This is not really a progress report--it seems as if there is not much, if any, progress again right now.  This is more about the real keys to success in recovering from pretty much anything.  These are not new concepts for me after many years of dealing with chronic pain and various other medical conditions, and other surgeries/recoveries.  However, there have been some differences this time that caught me by surprise, so choosing to take a step back to regroup and intentionally refocus on the basics.

This is a long recovery and much comes down to patience, perspective, and persistence. It is worth taking the time to let the body heal, not to push things or try to make things go faster than the body is ready. Perspective--this is where I have been struggling. The op hip is doing well and I try to keep my focus on that, but non op hip is not. Thus every time op hip is ready to try something new, PT says not to even try because non op hip cannot handle it. This makes it difficult to see any progress through rehab because I am still incredibly restricted. I was prepared for things to be very limited and to have to regain ability slowly. I was not prepared for other hip to interfere to the extent that I am unable to regain ability at all with some things--at least not yet. It has been exciting to see how well op hip is doing but this has often been overshadowed by how poorly non op hip is doing. 

For example, I still cannot walk other than just what is essential to get around as non op hip gets mad. But, I can handle sitting longer, and I can stand longer, Yesterday, I did PT exercises and elliptical in the morning, walked in the pool and did other PT exercises in the pool after lunch, did my own grocery shopping in the evening, carried the groceries up the two flights of stairs to my apartment, etc. I can do things and have to focus on what I can do and not on what non op hip is limiting me from doing. 

I am confused. The right hip has always flared up when left hip flared even prior to surgery. We have always gotten it calmed down again once left was calmed (usually with an injection). The left hip is doing really well after surgery, is getting stronger, is doing its own work, carrying its own load, and even starting to compensate for right. However, right is not calming down, but rather getting worse. So, I really am not sure why we cannot get the right hip to calm down this time without high dose steroid. Puzzling. I keep wondering if I have just become too sensitive.  However, when providers can tell without me telling where the problem is that the hip is swollen, gait is off, etc., I do not think I am being hypersensitive or imagining things.  

This weeks has its highs and lows.  My hips and shoulder were letting me do more again in PT early in the week, only to end up on the strong pain killer just from walking to class the next day. Sigh.  It is the right hip that keeps throwing fits.  We are trying to find the balance between giving it a break to calm it down, but not let it get weak. It is thus far defying that such a balance exists. It is now weaker than left hip, but it is still not calming down.  Persistence is essential to keep up with daily rehab work even when it feels like it is not doing any good. 

2 Corinthians 12:9-10

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.

Copyright © 2016 by Steph. 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.

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.

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.

One Year: I Did It!

I am one full year post op from left hip surgery!  This was the time frame I had been told at minimum for full recovery.  I never allowed myself to think anything less than a year.  So, when I was back to pretty much full normal ability around 6-7 months, I was thrilled and relieved and excited!  I ran into a flare ~9.5 months post-op after compensating for rapidly worsening right hip.  But, otherwise, the left hip is doing well.  Last appointment with surgeon, he cautioned me to expect it to take closer to 1.5-2 years to fully recover with each hip--I did not think at the time to ask him if this is because of the Ehlers-Danlos Syndrome, or because of both hips being involved, or a combination thereof. Regardless, it honestly does not matter to me as long as I know that my body can recover and do so well. My theme for this recovery has been that 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 taking the time to let my body recover the best it can. My only regret regarding this surgery was not getting it done years earlier. But, that is not something I had any control over. I am just grateful I finally was able to have it done and that recovery has gone so well.

A year ago, I went into surgery still semi-functional in spite of severe limitations and pain, and came out pretty helpless and needy.

Barely awake after surgery. Pleasantly surprised with how little pain!

I compared early recovery to infancy--almost completely helpless, could not walk, stand, sit, crawl, or roll over, and I woke every few hours even through the night, but slept the majority of the time. I even had "tummy time" as part of rehab. I regained ability far faster, but still similar in many ways to early developmental stages of infancy.

The pool has probably been the single item I used most through rehab and relied on most.  I could still do things in the pool even when unable on land.  Being submerged in water decreased all pain. I had asked before surgery and was cleared to be in the pool early after surgery.  Early on, I could not do much but just being in water felt good and gave me a break from crutches.  When we ran into issues with non-op hip interfering with rehab, PT had me do things in the pool as I could do more in the pool than on land.  That way she kept me moving, kept me progressing in spite of challenges.

Here I am a year later, having been told year at minimum for full recovery.  Am I fully recovered? Probably not.  I was back to pre-hip issues ability for the most part before seven months post op, but the hip is still more prone to flares, there are limits for how long I tolerate some things, etc.  Also, at last appointment, surgeon told me to expect it to take 1.5-2 years each hip for full recovery.  For now, I am very grateful for how well things have healed thus far. I was back to walking an easy four miles in an hour, going to yoga class, Pilates class, even a little running at PT or in the pool.  I had gotten to try whip kick with breaststroke and it went well....with post-op hip, not so much the other.  I pretty much got back to full ability with most things I had done before hip issues.  I have since lost a lot of that ability because of the other hip, but it was so good to be able to get back to them for a while and to see that my body is capable of recovering back to old ability.  I am swimming at pre-hip issues ability or better, so that has been encouraging to have retained something I can do even with other hip getting worse. Surgery on my other hip is in just a couple of weeks, so I will then be starting over again.

I am grateful that the hip has healed and regained ability so well. This in spite of compensating for a painful other hip the vast majority of the past year. I subtitled this post, "I Did It," and there is a huge sense of accomplishment for not only surviving the past year, but coming through it as well as I did. However, I would be remiss not to credit both my surgeon and his team as well as my physical therapist.  There is no way I could have gotten through this year without them and their treatment, support, guidance, and care.  There is also no way I would have come through as well as I did without all of the support and help from my family, friends, and so many others.

I had anticipated the early days after surgery doing various quiet activities- crocheting, reading watching movies, coloring, etc.  However, I had issues with blurry vision most of the first week, and by the time vision cleared, I was totally on my own and self care and rehab exercises literally took all of my time in those early days (still napping a lot).  Once able to do more, I was back to studies. So, I never did most of the hobbies or things I thought I was going to do after surgery.  I did start another baby afghan the morning of surgery.  I eventually finished it, but this is the longest it has taken me to crochet a baby afghan.  I think it took me longer because I was doing other things after surgery, and most of the crocheting took place in the car to and from Minnesota for surgeon follow-up appointments. (I was not the one driving!)

God has faithfully carried me through a challenging year.  So much has happened. Hip surgery and recovery were only one part. However, they have been intertwined with all of the rest.  

Copyright © 2017 by Steph. All rights reserved.

Two Weeks: Regrouping

August 1 marks two weeks post-op right hip and 13 months post-op left hip.  The focus has been mostly on the rigth hip, but the left hip is still rehabbing as well.  Left hip is doing great!  It is handling doing most of the work with crutches.  My shoulders are also so far handling the crutches. Both shoulders and left hip are usually pretty tired by evening and sometimes getting sore, but OK again the next morning.  I am trying to be cautious with how I move and how much I am up and around to avoid the issues I ran into last year from crutches.  I should be about halfway through the time on crutches.  The right hip is still doing very well!  I am still off pain killers, no actual pain.  It will get a bit sore if I have been up sitting more with appointments, but nothing concerning--just uncomfortable. It is interesting to look back and see how things were going at two weeks post op last time, as well as a year ago.  I'd say overall, recovery and rehab are still going better this time, but I am being cautious as I know how easy it is to overdo it and how easy it is for flares to strike. I also know weaning off crutches can have some uncomfortable times. A lot has happened over the past week.  This includes moving out of state, so final packing, cleaning, transition first to a hotel, then travel.  My sister was staying with me for the move and she did her best not to let me help, but I insisted with tasks I knew from last year that I was capable of doing. Thus, I did help with both packing and cleaning.  I am none the worse for doing so, and it decreased both our stress levels those final days.

In spite of all going on, rehab and recovery are still going well!  I can do most things on my own, am independent for nearly everything.  Because of surgery on right hip, I am still not driving--I have not even tried.  The hip may be ready to try, but I do not want to risk a set back and currently have drivers available. Once again, I am finding all of the work pre-op making sure I was strong has been incredibly helpful with early recovery and rehab.  We think I was even stronger prior to this surgery, than last surgery.  At any rate, I am handling crutches better, stairs are easier--not just knowing how to navigate them with crutches, but actually less exhausting, less work. With an injection several months ago anf treating MCAS and other issues, we had gotten shoulder pain calmed down, and that allowed us (PT and me) to work more on strengthening.  I was able to go from restricted to only swimming non-consecutive days to give shoulders a break, to gradually working up to swimming every single day (6 days in a row) the week before surgery.  This further strengthened shoulders, plus increased overall endurance and I think has really helped.  I think both hips were also stronger going into this surgery, than last time.  I know core strength was better  Last time, I was 7 months post-op abdominal surgery when I had the hip surgery and we had my core strength back really well and even better than prior to the abdominal surgery, but this time had even more time to continue to build my core strength.

Moving necessitates finding a new medical team. As a decidedly medically complicated patient, seeing new providers for the first time can be interesting (aka intimidating/nerve-wracking). I go into appointments with new providers hoping for the best but keeping expectations minimal.  I know things are challenging--not just for me to live with, but for providers to help me manage. I do not expect answers, solutions, etc.  I am only looking for help and support with learning to manage everything the best possible.  I have been surprised over the past year with some actual answers, diagnoses, etc.  But, was not expecting them, so they actually caught me off guard. However, it has been incredibly helpful to have those answers when transitioning care--better explanations for what is going on, less questions as to what exactly we are trying to treat, etc.

I got to meet my new PT and the appointment went well.  I am optimistic.  I also saw the physician who I have been looking to transition primary care to and had the sutures removed and replaced with Steri strips. Incisions look fine, the Steri strips are a precaution due to EDS. He was not at all concerned with my medical complexity, knew what EDS is, was open to info on MCAS.  He is willing to support me with what is needed to manage things.  So grateful things went well!  More hopeful.

I saw my surgeon the day before surgery on right hip for 1-year post-op appointment on left hip.  He checked both hips, which did not surprise me, and we also discussed both hips.  Left hip is doing really well, no concerns.  We discussed expectations long term for left, rehab for right.  My surgeon told me my persepctive on things was healthy and encouraged me to do what I did last time as it clearly worked for me.  This was a huge boost of confidence just as I was going into surgery the next day.  I was trusting him as he operated, and he trusting me with rehab. He told me he would support me with whatever is needed, but I need to let him know what I need.  I already knew he would support me as he did so with the first hip even through some flares and rough times. I was nervous as knew I would be changing PTs and I credit my Iowa PT with helping me rehab as well as I did with the left hip and really wished I could have stayed with her to rehab the right hip--at least the first few months.  The PT I saw this time in MN further supported me.  She commented she could tell I'd been through this rehab before and clearly had a good PT working with me in Iowa.  She trusted me to walk without the brace to get on the bike and commented she had watched and I never once broke restrictions. This was another boost of confidence that I and my body know what to do.  This confidence and trust in me and my body is so helpful when trying to navigate working with new medical providers.

Speaking of medical complexity, here are some of the Facebook memories for this date over the years. This is the third time in 4 years I have been recently post-op on this date.

1 YEAR AGO TODAY

Stephanie Kratzer

August 1, 2016 at 6:13pm · 

I get to start weaning off crutches! I know this will be a process and not to rush it, but I am so excited right now!

4 YEARS AGO TODAY

Stephanie Kratzer

August 1, 2013 at 9:11pm · 

I am headed back to Mayo Clinic in the morning for the results of my muscle biopsy and other testing. Please pray for clear answers and direction.

In the past week, I once again traveled out of state, this time moving from Iowa to Nebraska, rather than returning to Iowa from Minnesota after surgery. The trips are the same distance (~215 miles Ames to Minneapolis, ~215 miles Ames to Lincoln, both take ~3.5 hours, but I usually take 4 ish hours from frequent stops). The trip home to Iowa after surgery took 4 hours.  The trip to Nebraska went OK, but uncomfortable and the normally 3.5-hour drive took 5 hours.  I was so tired of sitting, even reclined, but too tired to stand/walk much, so ended up lying down on a bench at a rest stop for a while for a break.

Officially back in Lincoln, Nebraska. I have no idea how temporary or permanent this move is. For now, grateful to be here, but missing Iowa and Iowa people.  I am still in transition as staying with my sister until off crutches and can better handle all of the stairs at my dad's place. Then, still in transition even there until rehabbed well enough to find work and my own place again.

God has gone before, faithfully brought me safely here, sufficiently providing needs.  I need to keep trusting.

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