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.

Copyright © 2017 by Stef. All rights reserved.

4 Months: Massive Roller Coaster Month

Today is four months since the right hip surgery.  I am at the phase of recovery, where there still are weekly gains, but it becomes easier to see progress over a month, rather than a week. This was an interesting month.  Started out super flared, thought it was going end up with flare finally resolved....but nope, ended in worst flare yet. Instead of making gains, I have lost a significant amount of progress/ability. I had started making gains, but progress abruptly ended.

Week 14: Making Progress...

...I think!?!  This week started out in recovery mode after all of the travel to Minnesota and Iowa for surgeon and PT appointments, professional conference, etc. Plus dealing with an annoying issue that had resurfaced inexplicably.

Elliptical is back to pre-op ability.  Walking for exercise is still on hold, but we are using elliptical and walking in the pool to work on gait and help prepare for walking, just as we did last year with my left hip. Pool walking has been iffy since this flare started, so still trying to work back up on that and have gotten from 5 minutes, up to 15 minutes. Swimming has been shifting gradually back toward pre-op ratio of freestyle and breaststroke, but not there yet, as still protecting both hips and both shoulders. I did finally try on a good day swimming pre-op ratio of strokes and that resulted in pre-op pace, too! I was pretty excited.  This has only happened once, is not consistent yet, but offers hope! Next tried swimming a mile (6 more laps than normal), using various ratios of strokes--75/25, then 50/50 the final 6 laps.  (Pre-op was 90/10, or 90% freestyle, 10% breaststroke with no kick). It went well!  Both shoulders and both hips did fine!  Pace was not great, but who cares about pace, when new distance went well in spite of the challenges! Because of that little experiment, then walking in the pool for as long as hips felt OK and only stopping when they started to get tired (30+ minutes!), still did hot tub, and hot shower afterward, I ended up running a tad later for PT than intended, only had time to stop by home, hang up swimming things to dry, grab a snack, head back out for PT.  Thus, was nicely warmed up.  So, he tested me by trying more of the old exercises that had gotten hard--hips handled things fine!  He worked on range of motion--commented it is better and the joint feels better! PT was pleased and I was encouraged. Exciting to be back or nearly so to pre-op ability with a few things.  Shoulders are handling the swimming so far, but noticing left shoulder is getting more tender again with some things.  I see the surgeon for my shoulders again soon, and curious of his thoughts on progress.  We have gotten the last flare with shoulders calmed, we do have shoulders stronger again, but have not regained full range of motion again on left.  Also, the injection for the left shoulder has been losing effect over the past week or so.

Week 15: Back on track?

Elliptical is consistently back to pre-op duration and pace, swimming laps is now back to pre-op duration, pace, frequency as well!  Hip pain seems almost gone again, so flare seems to be calming.  Op hip is regaining ROM quite well after having lost ROM and been really limited.  Still not walking for exercise, but only as needed to get around. However, I can last longer with shopping or other outings. PT is pleased with progress.  Left shoulder is definitely losing injection effects.  Pain keeping me awake at night, pain with some activities during the day.  So far still handling swimming as long as I am very careful of form.  Still waiting to hear when we can get the MRI scheduled. Grateful hips are calming down!  But, it is always something.  It is what it is, move on....

I can sit cross-legged again!  This is new in the past week as we made progress with ROM.  I know I could earlier last time, but was told not to compare.

Week 16: Optimistic and Excited

Still making progress! Chiropractor and PT can tell there is progress.  I am walking better, the joint feels better, etc. All are pleased, I am encouraged. First day of week 16 (15 weeks, 1 day), and I "walked" 2.14 miles on elliptical in 30 minutes, then swam a mile (36 laps), in 35.5 minutes.  That is probably a personal best time.  This was a different gym, but same brand of elliptical, and pretty sure standard length pool.  I must have been on a roll or something? Couple of days later and 2.07 miles in 30 minutes on elliptical and swam 36 laps in 36 minutes! This was the regular gym, elliptical, and pool.

And, right at 16 weeks, sort of starting to flare, not awful, talking things over with PT, explaining I was puzzled with recent compensation issues with left hip and not sure.  He offered to check my form on the exercises I had mentioned being aware of the issues.  He shifted my position slightly at one point to see if it helped, and it put enough more weight through left shoulder (badly flared/painful), that it pretty much quit.  So....we think maybe the gradually worsening shoulder as injection has been slowly wearing off may be the culprit behind the return of old compensation issues.  The next puzzle is what to do......upcoming shoulder MRI will hopefully give more info on shoulder and how far we can push it, or if it needs more rest, etc.  Modified a few hip exercises for now to take pressure/weight off shoulders.  When working on that, it reminded me of old, similar exercises and asked if they were OK to do again, and he said yes, and in fact, they would be very helpful at this stage.

Week 17: The Unexpected

The beginning of this week started with multiple imaging procedures, including shoulder MRI. The initial scan was scheduled well in advance, the final scan was scheduled the day before. The middle scans were scheduled by accident--literally. I had gone to the gym to loosen up and get my body moving after the first scan.  Elliptical (2+ miles in 30 minutes) and swimming (1 mile--36 laps in 38 minutes), plus one lap walking in the pool, all went great and felt amazing!  Headed home, grateful that activity helped so much, feeling so much better, even thinking how grateful to be able to drive normally and without pain.  Then, the rest of the day, rest of the week, and who knows for how long, was changed in a split second.  A pick-up truck came through a red light and hit my car in the intersection, pushing my car into a post.  Both vehicles totaled.  My dad came to get me. Just walking from my car to his car, the right hip was sore, stiff, struggling not to limp.  We went straight from accident scene to take other driver home, then ER. ER did x-rays of right hip, diagnosed various muscle strains, other minor injuries, warned I'd feel worse the next day, instructed to use ice/heat, medications (NSAID, muscle relaxant), see primary care physician in a week if not better. Discharged from ER just in time to get back and changed and get to shoulder MRI appt. Physically, mentally, emotionally exhausted. I was badly shaken by the accident--both physically and mentally/emotionally. The rest of the week was a blur. The right hip was sore, had bruising and swelling. It refused to do much. I was backed down to early post-op (day after surgery) hip rehab exercises, elliptical banned, walking only as truly essential (significant decrease in daily steps, not lasting long with errands, or avoiding entirely), pool still OK as tolerated, but I could barely do anything before pain from the new injuries made me stop.  It is neck, shoulders, back, hips, etc. So, impossible to compensate for one with another as all flared, everything is hard. Crazy how I went from pretty able and making good progress, to pretty limited and dependent again.  Not driving, needing rides, etc. Amazing how new injuries and increased pain can make one grateful for the normal chronic pain levels. Also, interesting to be able to differentiate between acute and chronic pain. The new injuries are a completely different quality of pain. Pathetic that I know and can tell this.

I did let my hip surgeon and team know what had happened, that my right hip was flared, and asked what they thought needed checked--they had me request hip x-rays in the ER. Then, PA called and discussed things. He said not to push through things, to use pain as my guide, let my body rest and recover. Stay in touch and keep them updated after PT and primary care appts.

Start of Week 18 (4 Months): Overwhelmed

The shoulder surgeon called me himself with MRI results--confirming his suspicions he had told me beforehand of labral and/or rotator cuff issues in addition to the os acromiale (failure of bones to fuse during development).  Because I have already been in PT all along, injections have helped, but not lastingly, he is recommending surgery as next step.  However, he is aware of the recent accident, hips flared, so would not consider proceeding until my body has healed/recovered from everything it is currently dealing with. Oh my. I was totally overwhelmed when I got off the phone. I felt like new issues were being piled up on top of me faster than I could keep up with. I was relieved the MRI showed a reason for the ongoing pain and limitations in the shoulder.  However, I had been hoping to be done with surgeries for a while.  Not be facing another when still rehabbing from the last surgery, plus recovering from an accident. Additionally, if possible to imagine, this will be a bigger surgery than the hips were.

Even in the midst of challenge, I am still finding the positive aspects, learning new things.  Grateful! For the accident to be severe enough to total both vehicles, yet both drivers walk away! For the accident to take place at that busy of intersection, yet only involve two vehicles!  For there to be no passengers or pedestrians involved! For family and friends who came to get me, have given rides, etc.  God is good in all!  He gives grace and strength, He is sufficient.  I do not need to understand what happens or know why, but I do need to trust Him.

Here is the post from 4 months post-op left hip last year.

Copyright © 2017 by Stef. All rights reserved.

15 Years: Only By God's Grace

There is an anniversary date that my body manages to remember even if my mind does not.  It is an anniversary I would prefer to forget completely--both mind and body.  However, it seems permanently etched into memory.  It is not a pleasant anniversary.  It has a lot of negative associations.  It has definitely changed me.  Yet, there is good, too.

What is this anniversary?  The date of the car accident that first introduced me to constant, unending pain, moment after moment, day after day, week after week, month after month, year after year.  October 24, 2002. Fifteen years. I have written about the anniversary before several years ago.  This year is a little bit different. No, pain is not gone, no we do not have any cures, no we do not any hope of there ever being a cure, or of pain ever going away.  However, some of those unanswered questions I had back then, have now been answered, at least in part.  We now know why I do not heal, why I do not fully recover, why I will always have pain, fatigue, etc.  It also explains earlier injures that would never heal, more recent injuries that are not healing. The diagnosis in March 2017 of Ehlers-Danlos Syndrome, a genetic connective tissue disorder explains so much.  Collagen and connective tissue are a large part of what the body is made of.  When there are defects in collagen and the ensuing connective tissues, there will be issues throughout the body.  In my case, it is ligaments, tendons, muscles, etc. that will not heal, or take decades to do so. It is painful joints. It is muscle pain and spasm. It is also gastrointestinal issues from the time I can remember, migraines, sinus infections, etc. A rather wide variety of seemingly unrelated issues, that are very much related--all caused by faulty connective tissue across multiple systems. It helps explain many of the challenges I have encountered after surgeries and other procedures as well, when puzzled with everything happening.

Over the years, God has taught me much. Surrender and submission has been a major theme or lesson.  I have had to learn to let go of my independence, learn to accept and ask for help.  I have had to let go of old ideas of how I identified myself. I decided very early on that pain was not going to define me.  However, I had to acknowledge that pain still changed how I defined myself.  I had always considered myself strong, independent, reliable, dependable.  Pain and the related issues changed all of that--feels as if they took it all away.  Yet, I still refused to be defined by pain.  I still had my joy and could still choose to be cheerful even when feeling miserable.  Over the many, many years, God has slowly used pain, fatigue, and the other issues to show me my true identity.  This true identity is something that nothing can change and no one can change.  It is secure, unchanging.  What is it?  I am God's child.  He loves me, I am His. I have the sure hope of eternal life with Him in heaven one day--totally pain-free, new whole body, no more tears or suffering.  Nothing can change that.

Looking back over the years, I can still say that God is good.  He has sustained me through so much, He has faithfully provided, He has carried me when so weak I wanted to give up.  He has been working in and on me through all.  There is a reason and a purpose in all.  I do not have to understand.  I only have to trust.  His grace is sufficient.  He gives strength when I am weak.

These are just some of my favorite verses that have encouraged me through the years of pain and challenges.

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
Isaiah 41:10 (NIV)

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.
Revelation 21:4 (NIV)

Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
2 Corinthians 12:7b-10 (NIV)

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 (NIV)

But by the grace of God I am what I am, and his grace to me was not without effect. No, I worked harder than all of them—yet not I, but the grace of God that was with me.
1 Corinthians 15:10 (NIV)

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28 (NIV)

The Lord thy God in the midst of thee is mighty; he will save, he will rejoice over thee with joy; he will rest in his love, he will joy over thee with singing.
Zephaniah 3:17 (KJV)

Copyright © 2017 by Stef. All rights reserved.

Week 13 (aka 3 months): Survival

Another week, another month. I am 13 weeks (yesterday), 3 months (today), post-op right hip and 15.5 months post op left hip.  Last week, I had my first surgeon appointment since the right hip surgery, though there has been lots of communication over the past few weeks via phone, and some email.  I also survived my first long distance travel where I was the one driving since surgery.  That was quite the ordeal.

The positive aspects first!  I successfully drove over 430 miles each way for surgeon follow-up appointment and a professional conference.  I had been in a massive flare, so had been mostly resting, doing gentle rehab, icing before the trip.  Local primary care physician had started prednisone burst/taper, and that calmed things and allowed me to get through the trip.  My body survived driving that entire distance, sitting/standing through hours/days of conference sessions, etc. and I am alive to tell about it!  I split the trip both ways--never did the entire distance in one day.

I had a PT appointment before the appointment with my surgeon. The PT appointment went well.  She said this is just a flare, was not too concerned  That being said, she said my right hip was pretty stiff and she could tell it was irritated even with the prednisone helping calm things.  She did soft tissue work on the hip and surrounding muscles, checked some of the exercises, made some recommendations for me to work on and to take back home to my local PT.  I had a meeting at the PT clinic after the appt.  Then straight from there to surgeon's office. Surgeon appointment also went well. He is not concerned about things, it is just a flare. So relieved. I had not let myself think it was more than a flare initially, but when week after week and things only progressively got worse, I started to get more concerned, then a little scared.  Especially since there was a triggering incident in addition to normal flare factors. But, the incident was not thought to be of concern, no concerns regarding the hip itself to this point.  He did give me an order for an injection in case things do not calm down, but said to wait a few weeks and give things more time first. If no progress even with that, then we can check with MRI later, but he does not think it will be needed and I certainly hope not. So, so relieved and reassured!

I went straight from surgeon appointment to the hotel for the conference just in time to get checked in.  There were no rooms available yet to check in, so ended up attending first afternoon of sessions in yoga pants and tennis shoes from PT/surgeon appointments.  Oh well, it was a more casual setting, plus far more comfortable for me!  I used my same tactics that worked well last year to get through the conference in as good of condition as possible--sat/stood in the back where I could change position often (or slip out) without distracting others, evenings after sessions I made use of the hotel gym--elliptical, rehab exercises, then the pool--walking, gentle exercises, hot tub.  I had my ice packs with me.  There was a fridge but no freezer, but fridge-cold ice packs still help.  This year, I also did lots of lying prone (tummy time) and icing during breaks between sessions each day of the conference as well.

My surgeon's office was able to get me in for another PT appointment the afternoon the conference ended.  I did have to leave the conference a bit early, but figured my body needed the PT help more than my brain needed the rest of the final session of the conference.  The PT did help!  That plus constant ice made the first part of the return trip not so bad. I still stopped often. I was also still just done with being in the car by the time I got to Ames that evening, just as it was starting to rain.

Travel. Sigh. My body just does not like travel and at present does not even like being in the car even briefly. I had ice, adjusted the seat just so, used the heat for the seat, lots of frequent stops, etc.  Still, really struggled at times and to point of tears multiple times. By Omaha on the way up, I had serious doubts as to whether this was even doable as already struggling and in tears by Council Bluffs.  I had music CDs with me, and have the more intense music for when stronger distraction is needed...and turn the volume up. I also find I gradually ease speed higher to get me to next stop and out of the car again faster. I always used to set cruise control right at the speed limit, and this trip was usually 5 mph above speed limit, plus bumping it up with passing, and keeping up with traffic in Omaha, Des Moines, Twin Cities, so however fast traffic was moving, which was faster yet.  I am talented(?) with scheduling/timing so hit Des Moines on the way up at evening rush hour, Twin Cities on the way up at morning rush hour, Twin Cities as I left at evening rush hour, but missed Omaha rush hour both ways and just caught edge of Lincoln rush hour returning, but was able to stay on east side of the city.

The return trip, at the halfway point, I had a weekend to just rest and recover and that helped.  Again, I made good use of hotel gym and pool to get elliptical, rehab exercises, pool walking and exercise done.  Also, lots of lying prone and ice. I also had the chance to hang out with someone I had not seen in years and catch up a bit! Long story but very grateful! (Random observation/question: why do hotel fridges not freeze ice packs solid, but do freeze food?!?  I had brought snacks since I was gone most of a week and my body had been highly reactive to a lot recently, so wanted "safe" back-up options.  Anyway, the fridge could not get ice packs frozen, but could freeze both baby carrots and peanut butter.)

I saw one of my specialists and my PT from when I lived in Iowa.  Both were helpful.  PT was very helpful--yes, the hip is incredibly stiff, somewhat irritated.  She got it moving some better again, checked some exercises, gave more suggestions for moving forward from here.

I have only been home a couple of days. I went to the gym once home the first evening for elliptical and pool--swam laps.  It felt amazing to move after being stuck in a car for hours again.  Then family time after that and movie night with my sisters. Late night, but good. Good to be back.  Good to be out of a car and out of a hotel.  And, by God's grace, I did it! I could tell people were praying for me! I survived my first long distance trip post-op, with a flared right hip that had to do the driving. It took restarting the prednisone at little higher dose and extending the taper, but I did it.  (Got the phone call from PCP's nurse as I was driving out of the Twin Cities ~5:15 pm, rush hour traffic.  Normally, would not answer a phone when driving,and certainly not rush hour Minneapolis, but knowing it was Friday, after hours, and there was no way to call back, so took the call.  Thus, we were discussing what to do with prednisone while I was navigating rush hour traffic. No missed turns, no mishaps, plus she helped support what to do over the weekend and until back home again.)   Prednisone taper is nearly done, now. So, it will be interesting to see how things go once fully off again. Just grateful it helped make the trip doable.

Yesterday was a recovery day--no appointments or anything planned.  Slept in, did PT exercises, went to the pool, etc.  Today was still a slower paced day, but back to PT.  He took it easy on me since still in recovery mode.  But, still did exercises, soft tissue work, then ice. Rehab seems to be going better again.  I am also advancing with ability with both elliptical and swimming, plus also working back up with pool walking.  Elliptical is approaching pre-op ability, but is not consistent yet.  Swimming has been at pre-op duration for several weeks, but not pace yet, as still protecting shoulders as well as hips.  However, right leg is kicking every lap of freestyle now as of this week.  Neither side is kicking with breaststroke yet and I was told to wait on that still. Walking for exercise is still on hold.  Walking for now is only as essential to get around. Which is pretty much the same as pre-op as well, only this time, not limping, not painful. So, definite progress.

 

Elliptical 2 days pre-op right hip (and 12.5 months post-op left hip) and 3 months post-op right hip (and 15.5 months post-op hip).

13 weeks/3 months post op left hip last year.

Copyright © 2017 by Stef. All rights reserved.

Week 12: Fear, Frustration, and Hope

Crazy week.  Started out miserable, scared, really not doing well. We backed off of PT, rehab exercises again to see how that would go, kept some exercises that seemed to be going well, kept elliptical, kept swimming. I was started on steroid burst again, sent to rheumatologist.  The rheumatologist appointment was not particularly helpful.  He again ruled out systemic rheumatic conditions--not surprising.  However, he really had nothing helpful to suggest. He recommended things we had either already tried and were doing or had tried and not gone well. (This was among one of the worst appointments I have had in a long time. He did not exactly brush me off, so much as did not listen, appeared to have preconceived ideas/assumptions about me, would not let me explain, pretty much made me feel like I knew nothing and was doing everything wrong, and as if the rest of my team was not doing things right either. It was all I could do to try to stay calm, not get upset.  I was working so hard and staying calm, I forgot to ask half of what primary care physician had asked me to ask about. But, I prefer not having this physician involved in my care in anyway.  I suspect, he prefers not to be involved as well, and that may be why he made things so miserable for me????)  I did cry that afternoon as incredibly frustrated and emotionally drained from the appointment that morning, plus still in escalating pain, getting more scared.  I had gone in hoping for the best, but preparing for the worst as I never know how appointments with new providers will go.  But, I was still not prepared for that.  Rough, rough day, questioning everything because I had been questioned.  Surgeon's PA called later after hours to touch base with how I was doing.  I updated that things were still getting worse, that PCP had started prednisone, that rheumatology appt was unhelpful other than again confirming no systemic involvement from autoimmune inflammation. I did not tell all that happened, but did tell what was relevant to problem-solving hips issues. PA seemed to agree with me that this was not a good fit, that I need someone who will think outside the box, that my surgeon will check things and see what he thinks once I get there.  That was reassuring to be reminded that my surgeon and team know me, are there for me, and will support me no matter what some other provider who had never met me before may say.

I called my Iowa PT out of desperation as miserable, scared, dreading the trip to IA/MN. My Iowa PT called me back and was so helpful!  She tried to problem-solve over the phone what might be going on, what might help.  Gave a couple of things to mention to local PT next appointment, then see what MN PT and surgeon think when I see them.  I am scheduled with IA PT on the return trip, too.  So, she will ave a chance to see what is going on and help the best able.  That conversation was so reassuring.  There has been so much uncertainty.  She had concrete ideas and suggestions.

After 24 hours of prednisone, started noticing brief reprieves from pain and increases in ability to move a little better.  It continually got better, but sort of non-linear, as we just kept getting rain and storms.

Finally, a weekend that was not mostly bed rest!  Saturday started rainy, but ended up nice.  I got through exercises pretty well that morning--still cautious and careful of what I do and how I move, but starting to try more again. Sunday, still stayed home from church as still afraid to sit much. But, did rehab exercises, took the day slowly and carefully.  Opted to go to the pool and swim laps as felt well, swimming helps, not sure how much access to swim I will have later in the week.

The real test comes this next week: long distance travel, surgeon follow-up appointment, professional conference, other meetings and appointments.  We are problem-solving a lot of different things right now. The upcoming travel, is part of why I am being so cautious now--I do not dare push any limits and make it harder to handle the trip.  Still uncertain, but hopeful.

12 weeks post op left hip last year.

Copyright © 2017 by Stef. All rights reserved.

Week 11: Crashing?

Oh my, rough, rough week.  It started out a little more optimistically, but by late in the week, I was a mess and the weekend was tough.  So far, each subsequent day has been a little worse in spite of backing off of things again this week, but staying moving with what has been "safe" activity.  Hips are just not happy with much.  Back is not doing much better.  Shoulders are hanging in there! Yay for something!

This week started out some better, but then by end of the week I was miserable again and pretty sure the flare was in fact changing into a crash.  I heard back from surgeon's office--but hard for them to know without seeing me. The weekend was not just rest days, but full on survival mode.  Saturday, I did some exercises, somehow got two loads of laundry done, but then rested.  Sunday was entirely rest. Every time I got up, I would start to feel as if I was going to pass out. So, lots of water, lots of salt (what cardiologist told me to do years ago when worked up for this issue), found my compression socks from surgery, managed to get them on even op foot without help, compression shorts, even pulled a pair of leggings over the top of all of that for extra layer of compression.  It seemed to help some, so did that all weekend.  By Monday morning, my body hated compression and when things were getting more sore again, tried the compression shorts to see if it would help but it made it much worse.  So, whatever it was helping, was no longer viewed as helpful. Called surgeon's office again as miserable and sort of scared.  Knew they had a busy afternoon so did not expect to hear back.  After a miserable day, went to the gym--elliptical and swimming can still get me pain-free in both hips even when nothing else can.  Well, after swimming, saw I'd missed a call from surgeon's office.  Oops. 

We took an easier week with respect to PT, chiropractor appointments, and with respect to rehab.  Still keeping some rehab going and keeping up with cardio as tolerated. So far, both elliptical and swimming can get me pain-free, and I think this is independent of just exercise effect. I think elliptical is movement of the joint, swimming, the effect of water.  Also, cold pool is better than warm pool, but both help. Hot tub helps, but have to be super careful as heat intolerance issues are worse than normal. 

Called primary care physician and they got me in same day, prescribed oral steroid burst/taper to break the flare, referred to rheumatologist.  The rheumatologist had a cancellation for the next morning!  But, they needed me to complete ten pages of intake forms, and needed copy of doctor's note.  I explained the more helpful note was probably my diagnosis with Ehlers-Danlos Syndrome from last spring and I had a copy of the complete note.  They had me come in that afternoon in advance to pick up intake forms and bring in notes to be copied.  They told me they knew it was me just watching how I walked in....so, gait is getting bad enough that others can tell. (I am going to wait to write about the appt until next week, since it officially took place during week 12.  Besides, I need time to process, and figure out how to frame things.....)

11 weeks post op left hip last year.  I know I was in a crash then, and this is part of what is making me think the current flare, might actually be be a crash in process. I made it much longer without crashing than I have ever done before without prednisone. Week 11 this time ended with prescription for prednisone burst/taper.  Hoping and praying it works as well as it has in the past.

Copyright © 2017 by Stef. All rights reserved.

Week 10: Hanging In There

Here I am ten weeks post op right hip.  Definitely being reminded that this is a roller coaster recovery with lots of ups and downs.  I am still in a flare, discouraged, tired. I see my hip surgeon in a couple of weeks. Then the shoulder surgeon a couple of weeks after that.  I am actually concerned about the travel for both. I am struggling more with driving, sitting, standing again with this flare.  We have done a week of pretty much rest, ice, heat, gentle movement as able with the basic early exercises. Every attempt at progress was met with an angry hip, so backed off again. The more advanced rehab exercises have been on hold, elliptical has been on hold, even stationary bike was on hold for a while. We attempted a short trial of pool walking, which has historically been a "safe" activity and that did not go well, even though slow, careful, short duration. So, that got things backed way down and another rest day.  Lots of trial and error trying to figure out what the op hip in particular, and my body in general, will tolerate. I stayed home from church again as unable to sit or stand and not wanting to make things worse.  I avoid driving other than appointments, and still use left foot to hold down brake at long stoplights to give right hip a break (no pun intended!). I used to drive a 5-speed once upon a time so do not dare even trying to drive or brake with left foot since it is used to a clutch.

It has been really hard to go from steady progress, to no progress, then loss of progress. A week and a half ago I was up to 25 minutes on elliptical, 30-45 minutes of pool walking, 30 minutes stationary bike with resistance and it was going well.  Rehab exercises included mini squats, single leg bridges, various other more advanced exercises. Went to no elliptical, no bike, no pool walking, very little rehab--pretty much just the day-after-surgery exercises.  Still swimming some, but no kicking, and even backed off of the swimming.

Another cold front and series of storms went through this weekend, so another flare, on top of the already unresolved flare.  So, still doing some days of total rest.  However, also starting to figure out what the hips will handle--not much, but more than nothing. Left hip is really just irritated from compensating for the right hip--I think. Anyway, discovered over the weekend that both hips will handle a few minutes of stationary bike without any resistance; yesterday, that as long as super careful, I can do a few minutes of elliptical.  Today, both hips handled a few minutes of careful pool walking. So, I can get them moving some. All of this was OK'd by PT.  He did a ton of soft tissue work on both hips last Friday and we talked through how to try to approach this as not wanting to lose what strength we had gained, but not wanting to further irritate things either.  He had suggested the pool walking earlier last week and it did not go well. I mentioned when pool walking did not go well with left hip last spring, elliptical was still OK for some reason, but I had been afraid to try again this time since this is earlier post op and we had been still advancing elliptical, as it was a newer activity.  He said to go ahead and try, but start out slowly and keep it short. Then, basically proceed as tolerated. PT today went well.  He thinks we are making progress in that at least the hip is not still getting worse and we are figuring out some things it will handle. It has become very selective about range of motion, and type of exercises it will tolerate. As a result, there are some things I am becoming afraid of even trying anymore.  My limit pushing side is definitely being overridden by my cautious side at present with respect to hips.  The limit pusher is dominant with shoulders.  Since shoulders have been calming down since the injection, and even in spite of current flare, we are working on strengthening more again.  So, today I tried swimming laps again even though I swam laps yesterday.  This is the first attempt at swimming consecutive days since before surgery.  It went well! Grateful for progress somewhere!

Choosing to remember my theme for recovery.  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 my body needs to heal well.

Ten weeks post op left hip last year.  Apparently flares about now are normal.  However, this time, not the same triggers. Last year was a full-blown crash as tapering prednisone, working through a stressful project, etc.  This is only a flare, though if it does not get calmed, may turn into a crash depending on what direction things go.  I am employing what tactics I know and that I can implement.  In the meantime, I am grateful it is not worse than it is.

Copyright © 2017 by Stef. All rights reserved.

Week 9: Flare

Nine weeks (two months) post op right hip!

I still remain susceptible to flare triggers and suspect I will for the rest of my life--sobering thought. The combination of travel, sitting early in the week made me more sensitive to being in the car the rest of the week even just driving to PT.  It was not bad, just a bit sore.  Then, massive cold front went through and my body does not like even mild weather pressure changes at all, so I definitely felt that one.

I seem to have encountered the first flare-up with right hip since surgery.  Both hips handled the drive to and from Omaha (from Lincoln) early in the week, plus lots of sitting between waiting and exam rooms.  This was huge as driving, sitting, standing were incredibly difficult pre-op both hips. I was pretty excited at how well things went. However, right hip was more sore that evening and the next couple of days. I noticed it did not like being in the car, and found myself using left foot to hold down the brake at stoplights again as I used to do pre-op.  There was a major weather change shift over the weekend and that flared entire body, including both hips. Sunday, I stayed home from church as too uncomfortable to be able to sit. The right hip was still pretty sore Monday, so called PT to see if this was something to work through and continue rehab exercises, or back off.  I was told to take a break and he'd check it next day at my appt.  He did check and could tell it is irritated, but not too concerned and figured it should be calming down in the next day or so.  He said to go ahead and try pool walking, then elliptical, but back off duration and pace, then start adding back more rehab exercises by Thursday.  Tried pool walking this evening, and I did not last as long as usual, but being in the water felt great!

The Omaha trip earlier last week was seeing a new orthopedic surgeon for my shoulders, and to check hip incisions. Incisions were not concerning. This surgeon was clearly familiar with Ehlers-Danlos syndrome and among other things checked what degree of laxity my shoulders have--some, but not too bad. He confirmed the os acromiale in both shoulders and that it can cause pain itself, though my worst symptoms are coming more from rotator cuff--especially left shoulder. I ended up with cortisone injection in the left (worse) shoulder, plan to follow-up in several weeks, discussed MRI at that point depending on how things are going. He was more thorough than when I have had shoulders checked in the past, but he also took more time. Injection calmed shoulder nicely! Normal injection response--amazing relief first few hours, then more sore.achy, then couple of days later, better! Right shoulder is calming as well--I was not sure, but really hoped it would without an injection as it had done so in the past once we got left calmed some.  We have already increased shoulder exercises in PT with injection in effect. This is a relief.  After the appointment, I was second guessing both injection for the left shoulder and not getting an injection for the right shoulder.  However, I was basing my observations and preferences on how both shoulders felt and what I knew from past. We had talked about waiting on injections completely.  However, when I explained what has been done, is being done, what happened last time, we decided on injection for left shoulder that day.  I was asked about right and said I did not think it needed it. Afterward, half wished I had waited on left as several more weeks is really not going to be that big of deal but then remembered the difficulties falling asleep at night from painful shoulders.  So, then wondered if I should have asked to go ahead with right as well, but do not want more injections than actually needed.  My body seems to be following previous patterns and confirming right decisions.

Week 9/2 months left hip last year.

Copyright © 2017 by Stef. All rights reserved.

Week Eight: Optimism

Eight weeks post-op right hip, 14 months post-op left hip.

I am finally getting back into more normal routines.  I am doing pre-op exercise routine as far as able, and I am back to taking a day off a week from exercise.  That has helped immensely. Instead of merely getting through each day, I am starting to look ahead again.

I do still get tired out/worn out easily and if I do more one day, need to take the next more slowly.  I am sleeping 10-12 hours a night, 8-hour nights just are not enough.

PT says my op leg is getting stronger, walking is getting better!  Yay for progress! Still advancing time on elliptical and it is going well. I am up to 15 minutes and nearly a mile at a time and it feels great to be moving!  More lap swimming again, and that also still feels great! I am kicking with left leg for freestyle, no kicking at all for breaststroke. I am working a little at a time on increasing flutter kick with freestyle with right leg, but not pushing it yet.  I am swimming full number of laps I was swimming before surgery! I have to be super careful of shoulders, but as long as I am careful and am not swimming consecutive days, shoulders are handling being back to more swimming again. Pace is slower than before surgery, but between not kicking as much/strongly, and shoulders being irritated, not worried about pace at this point and working more on form and grateful for being able to swim at all. I am still walking in the pool to work on gait and endurance.  I can walk up to 45 minutes in the pool (maxing out here).

I was given an activity monitor a couple of weeks after surgery.  (I sort of wish I'd had it pre-op first hip as it would have been fascinating to watch as ability decreased pre-op first hip, became nearly non-existent after surgery, the slow increase with rehab, the decrease as second hip got worse, now slow increase again. It also would have been interesting to compare between recoveries.)  Anyway, when on crutches, to protect my shoulders in particular, I was intentionally trying to limit to less than 1,000 steps per day (pathetic goal, I know).  I was mostly successful, exceptions being PT days and pool days.  Once off crutches, not really trying to manipulate things, so much as let my body move more as able and tolerated.  Steps have been averaging around 5,000-6,000 a day.  However, I have reached over 10,000 steps in a day in the last week!  For someone who is goal-oriented, it can be hard not to try to reach certain goals and an activity monitor can make it even more tempting to push toward goals. However, the clinical researcher part of me finds it interesting to just observe what happens without trying to manipulate outcomes.

I did get in for dry needling early in the week.  Opted to target low back and left hip based on observed referral patterns and what I know of my body.  Sure enough, she found numerous tight areas to work on and left hip had more tension than right. She said she can also dry needle shoulders.  I see the orthopedic surgeon for my shoulders, so will see what he says about shoulders, if injection(s) or not, then go from there regarding needling or not.

Not sure how many are aware I am sensitive to latex but PTs are aware as regular therapy bands contain latex. I had latex-free bands from a clinic several years ago but these were wearing out and the next clinic I had been at did not have latex-free bands.  The new clinic I am at now has latex-free bands!  It is the little things. All bands shown below are latex-free.  The orange ones are the ones from several years ago.  The others are the new ones.

New latex-free bands!  No more rashes/reactions, no more worn-out bands breaking on me!

There are, of course, other things going on, but choosing to focus on what is going well.

Week 8 left hip last year.

Copyright © 2017 by Stef. All rights reserved.

Week Seven: Regaining Independence

Seven weeks post-op right hip, 14 months post-op left hip.

I have been incredibly independent from the start this time, so not much to complain about. However, with this surgery being right hip that was operated on this time, driving has taken longer.  I had started to feel stuck even though I have sisters who have been very willing to give me rides when they are available.  But, as the flare progressed, I needed more medical care, which translated into more appointments, which in turn meant more rides. Also, their schedules started to fill as they returned to normal school and work tasks. It was hard to try to schedule things when not knowing availability for rides. I have also been more or less stuck by myself at home during the day.  I have not really had time to feel lonely or anything because rehab exercises, ice, rest take pretty much the entire day. However, I had projects I wanted to be working on and have not been able to get to them. I do still get a lot of reading done and some crocheting as ways to fill the time when on the exercise bike, or icing, or in waiting rooms.

Well, I can drive again! I started about a week ago. I was told to start out just trying in a parking lot, or non-busy residential area.  That went well, so drove myself to PT a couple of days later and that also went well.  Drove myself to church.  Drove myself to run errands, etc.  Yay!  I am also cleared for elliptical!  First attempt felt great and went well.  It was hard to hold back to the duration and pace I was told to start out with as trial.  It felt amazing to be able to move more again!  I then swam consecutive laps in a lap pool for the first time since surgery.  I had done up to ten laps at a time here and there or had done consecutive laps for 35 minutes at a small pool, but that was different.  This was 35 minutes of non stop laps in a normal length pool.  My pace is not what it was pre-op, but since this is the first I have tried to this extent since surgery and since I am not kicking, I was impressed with how well it went and how many laps I got done.  I am kicking with left leg for freestyle, no kicking at all for breaststroke. I can do a tiny bit of gentle flutter kick with right leg for freestyle, but it does not amount to much yet (have only done a couple of partial laps and there is no power in it--really just working on getting it used to the movement again).

PT went well yesterday--he told me I am walking well, gait is looking pretty good, he can tell I am getting stronger.  The op hip is doing well.  It is the rest of my body that has been the set back. I was given the OK to back off on how many times a day I am doing exercises since we are advancing with more strengthening.  Hopefully, this means things will be and feel less time-consuming and tedious. It has been exciting to advance in rehab and to get stronger, but has been hard when it feels like my entire day is taken up with rehab.  He also said it is fine to go back to taking one or two days off a week from intentional exercise!  Yay for another shift back to more normal routine.

Aha moment!  This article explains some of why I felt like I was always hungry in spite of always eating and eating well those early week after surgery. I knew healing from surgery itself placed higher energy demands on the body and I suspected crutches also did, but was not sure what effect crutches had, especially when limiting how much I was up and around.  (I was finally weighed recently and I did lose weight after surgery in spite of trying to hold weight stable. Of course, there was also muscle atrophy from being partial weight bearing as well.)

Overall, still doing really well with respect to recovery.  Some of the massive flare is starting to calm down.  I am more optimistic again. There are still challenges to work through, but they seem less insurmountable.

Week 7 left hip last summer.

Copyright © 2017 by Stef. All rights reserved.

Week Six: Full-blown Flare

I am six weeks post-op from right hip surgery and nearing 14 months post-op from left hip surgery. Things are going well with respect to recovery, but not going well overall.  I am definitely in a massive flare of the already existing issues that we'd had sort of calmed down before surgery.  Several weeks of crutches were too much for my body.

I am choosing to focus on what is going well.  I am still sleeping through the night in spite of increased pain.  This is nine to eleven hours a night.  The hips have been mostly pain-free.  Left got sore over a week ago and is included in the current flare.  However, even flared, it is better than it was pre-op.  Right hip got sore a few days ago, too.  This is the first it has had anything even near pain since right after surgery. Again, even sore, it is far better than it was pre-op.  Surgery has already proven itself more effective than injections early on just as it did with left hip last summer. I am back on the prescription anti-inflammatory, but that is more for the global flare than for hips this time (last spring it was for hips). I can walk short distances without crutches and it is pain-free, no limping, but still have to work on gait, strength, and endurance. I can swim (no kick), ride stationary bike, do PT exercises (advancing--more weight bearing work, more core work--mini-squats, planks, etc.).

The flare. This includes neck, back, both shoulders, wrists, hands, knees, even hips to a lesser extent.  All is a result of crutches. This has been building for weeks in spite of trying to prevent it.  It has been getting ever more challenging.  At present, it looks like the worse of the two shoulders will need an injection.  I am hopeful that the other shoulder and left hip will calm without injections. I am keeping activity to limited level--safe activities.  My body needs to move, but it is very easy to overdo it right now.

I encountered more difficulties with being "medically complicated" but I am so grateful for a medical team who are willing to support me in spite of the challenges. The flare reached crisis level late last week and I called various of the physicians who knew aspects of the situation.  The EDS/MCAS doctor was not available and no other provider at that clinic wanted to attempt to guess at what to do for me so deferred to local doctor who had only seen me once before. The conversation with surgeon's PA was very helpful--they will support me the best they can through this, restarted the prescription NSAID, and OK'd injection for the shoulder.  The appointment with primary care went very well. He is trusting that I know my body, know what helped work through the flare last time, and he will support me with what is needed--refilled the prescription NSAID, gave options for getting injections done. PT this afternoon went very well.  We are still making good progress with rehab.  Added back "new" exercises that I get to do again. No crutches now except for longer distances, then only one. Checked form and it is great--helped I am sure that I did exercises right up until surgery, then have picked up again as soon as able and cleared since surgery. PT did lots of soft tissue work on both hips, discussed shoulder exercises, iced both hips and both shoulders at end.

High points this past week include actually making it to church for the first time in well over 6 months!  Yes, the zero gravity chair came along, but I made it!  I still had both crutches, but they were more of a warning to others not to crowd or rush me than actually being used as been walking without them at home.

Week 6 left hip last summer.

Copyright © 2017 by Stef. All rights reserved.

Week Five: Making Progress

This week started off as tedious as ever, still on both crutches.  I am in the stage of recovery where nothing can get my heart rate up....except swimming.  However, swimming is still no kick, I have two not-so-good shoulders, so have to be super careful.  I still get worn out easily. Getting through rehab exercises, icing, self-care takes all day.  I am getting lots of reading done--when on the stationary bike or icing.  Otherwise, things feel time-consuming, tedious, tiresome.

My body is getting ever more uncomfortable from crutches--cried myself to sleep a couple of nights ago from shoulder pain--outright pain, not just soreness.  Back on pain medication at night for shoulders, neck, back.  Hips are so far OK, though left has been getting sore and nervous about flaring it up again. I took a day off from rehab exercises over the weekend as a desperate attempt to help calm things down, or at least slow the downward trend.  The surgical hip was doing fine, handling things, did not need a break, but the rest of my body needed help of some type and I was not sure what else to do. I am not sure the break helped, but it did not seem to hurt, either.  I still did some gentle range of motion work for both hips.

Today I woke with worse pain yet in left shoulder, right shoulder more sore, neck and back even more sore, left hip more sore, etc.  The result was tears--exhausted emotionally from how tedious the past few weeks have been, how sore and stiff the rest of my body has been, etc.  I had nearly lost track of how well surgical hip was doing with how poorly everything else was feeling.  I knew I had PT this afternoon and was desperately hoping he'd let me try walking without any crutches and just see if I am ready as not sure my body can handle another day of this.  I was literally fearful of flaring things beyond point of return. I did take pain medication this morning as had a sneaking suspicion I'd be crying all day if I did not as too tired of the situation to deal with the pain as well. The day did get better, but still working on staying off my feet/crutches as much as possible, lots of rest with ice packs.

Physical therapy this afternoon went well!  I was asked how things were going and was honest--right hip is doing well, the rest of my body not so much.  Tried some new things with exercises and they went well. I was told the right hip is doing well, making steady progress, getting stronger!  This is encouraging! Tried walking with a cane and that went well and was easier on my shoulder.  I asked if reasonable to try walking without any aids?  Yes.  I tried and both hips felt fine.  However, PT commented I was limping.....on left side.  Oops.  He had observed a lateral shift as I was walking. This is an old compensation pattern from pre-op left hip.  Sigh.  So, he had me focus more on form, try again, and said it was better.  So, I am officially cleared to walk without crutches at home!  Yay! Excited, but more relieved than anything.  Recommendation is to use a cane for longer distances, keep one or both crutches when out and around as a visible cue for others not to crowd or rush me.  I am fine with this, as I recall last time being glad to be off crutches, but also missing them because they did provide a very visual reminder to others that I was not 100% and move more slowly and carefully, thus not to rush me. PT iced both hips at the end today.  That helped. So relieved and grateful!  Hoping and praying everything does calm down.

Looking back, it appears week five was a bit rough last time, as well. However, it also it had its good times.  Similar to last time, I have added back some of the pre-op exercises for the rest of my body as able to stand more. This has helped some.

Interesting link to a blog post by a PT who has had/recovered from surgery for hip labral tear.

The highlight of this week was not rehab-related at all.  Rather, it was getting to view the solar eclipse!  So exciting to get to see!

Copyright © 2017 by Stef. All rights reserved.

One Month: Holding Steady

Yesterday was a full month after the right hip surgery. It seems hard to believe it has been a month since surgery.  In some ways, it feels like it has been forever.  The tedious stage continues.  My body is exhausted from crutches and I wake stiff/sore every morning. I am cleared to use only one crutch around home as long as it feels alright and not too long of distance.  I can put full weight through with both crutches, but again, only as long as it feels alright. So far it all feels fine. I know I posted at one month post-op last time as it was a memorable date--the day I was first allowed to start weaning crutches and try walking both with one crutch and with no crutches.  The no crutches did not go well and I had to keep a crutch.  This time, I was allowed to try walking with one crutch in PT at four weeks, and since it went well, told it was fine to walk short distances at home with one crutch.  Well, the PT appt at one month (4.5 weeks) was pretty much just repeat--walking with one crutch still looks fine, so still fine to do so at home.  Otherwise, two crutches. Because I had already been cleared to do this, this was sort of an anti-climax to be just maintaining the status quo. We have still not even tried seeing how I do without either crutch. We know I can stand with full weight on surgical side. I think I am more puzzled than discouraged, but have to admit to being somewhat discouraged. This hip is doing better, tolerating adding weight on better than first one did, etc. Thus, I am uncertain why I am being held back.  However, I know from last time that weaning off of crutches is a crucial step, needs to be done in such a way as to make sure there is no pain and no limping.  We are still working on gait.  The rest of my body gets ever more tired of crutches.  I wake every morning with everything stiff and sore--neck, back, shoulders, wrists, hands, both hips.  Left hip has been sore the last few days--enough that when icing right hip first thing in the morning, I have iced left as well the last few days and that has calmed it nicely.  So, hoping to avoid full blown flare, but being cautious.  I had been limiting how much I am on my feet/crutches/walker anyway, but starting to do so even more and starting to become afraid of consequences of being on crutches/walker this long based on what happened last time and what is happening now. I still go nowhere non-essential. I have been wanting to get to church, but trying to wait until off crutches. I had been hoping to make it this weekend, but with still being on two crutches, this is now unlikely.   Besides, it is still hard to sit very long. (Family movie night here at home started out with me fully reclined in my zero gravity chair, but halfway through I moved to lying prone on the floor propped with a pillow.)  The other hard part of recovering from right hip surgery, is still not being able to drive.  I could drive pretty early with left hip. I am very grateful for sisters who are willing to make themselves available to give me rides.  However, I really want to be able to drive myself again.

I am still not on any pain medications or sleep medications, but things are stiff and sore enough to be considering restarting pain medication(s), and sleep quality is starting to worsen enough to contemplate adding back sleep medication(s). I know this is just an awkward, tedious, challenging phase of recovery, so I am trying to be patient and proactive versus reactive in my approaches.  However, coming off crutches with hips flared is not going to help the next stage of rehab, either.  Uncertain what it best. Hoping to get through the weekend alright and see how PT goes next week.

Copyright © 2017 by Stef. All rights reserved.

Four Weeks: Stay the Course

In some ways it is hard to believe I am already four weeks post-op, and in other ways, it seems like it has been much longer. This week started out much more optimistically than the previous week proved to be.  However, in reality has not really been much different. I can put more weight on the surgical side hip/leg now, but am still on crutches, still partial weight bearing--even if there is a higher percentage of weight on the leg, it is still not full weight. My shoulders, hands, wrists all appreciate this change in weight bearing ability, but are still stiff and sore from still having to aid with partial weight bearing. My body is getting ever more tired of crutches. Also, the additional weight bearing is as tolerated, so there are times I am still at the initial 20 pounds max restriction on surgical side.

I am still loving being in water--pool walking, PT exercises in the pool, swimming no kick, just hanging out in deep water, etc. Being in the pool is a break from crutches but being in water also provides counter pressure and lowers all pain. Both hips are pretty much pain-free, but the rest of my body is not and crutches have flared the normal problem areas.  Last time, I ended up needing injections in the other hip and one shoulder once off crutches.  Hoping to get by without needing injections this time.  So far, other hip is holding out great!  Both shoulders are not so happy, but not awful.  So, I am remaining optimistic.

Positive observations:  I was off pain medications very early after surgery, used some over the counter acetaminophen as needed with the move and travel, but then was off of that as well by 1.5 weeks post op.  I was prescribed non-optional NSAID (anti-inflammatory) for the first three weeks after surgery, but even that is done now and so far still doing well without any pain medications at all! I have also been off of all sleep aids since surgery, though used them a few nights here and there around the time of the move because of the general upheaval of routines and environment. Since then, I am sleeping through the night for the most part even without sleep aids!  This is huge!  I have been on some form (usually multiple forms) of pain medications and sleep aid medications for many, many years.  I did have a reprieve after surgery last summer, but was still on prednisone at that point. This time, not even on prednisone.  However, I am on super high doses of antihistamines to manage the MCAS (mast cell activation syndrome), and this is strongly suspected to be aiding with symptom control--both pain and sleep issues, along with numerous other symptoms. The antihistamines were what aided the final weaning fully off prednisone last spring. I have noticed a little stiffness at times in the surgical hip since stopping the NSAID, but it seems to be intermittent, not persistent. No increase in swelling though.

I had noticed at two weeks post-op that op side leg was already getting smaller from atrophy from being on crutches.  A little after three weeks, my sister commented my leg felt noticeably lighter when she was doing the circumduction "exercises" with it.  Yep, sigh.  I had asked PT the day after surgery if there was anyway to minimize the atrophy after surgery while on crutches and she said there was not.  So, it is what it is.  It is interesting how fast muscle is lost and how long it takes to regain it. Last time I had lost an inch circumference entire length of leg on op side by the time I was off crutches.  It took months to regain it.

Last time I had incision issues at 2.5 weeks post-op.  Things resolved fine.  However, it led to a discussion pre-op this time in context of recommendations to leave sutures twice as long due to the Ehlers-Danlos Syndrome.  Last time, I had been reacting to the stitches themselves by the time they were removed, so I was nervous about leaving them even longer. Thankfully, surgeon's PA said to still get them removed at the same timing as last time, but this time suggested steri strips.  So, that was what we did and so far, so good. Just recently pulled off steri strips (as directed) and things look good--at least as good as surgical incisions can look. Certainly looking better than the mirror image ones on opposite hip, which are wide, though fading nicely.

PT appointment at four weeks went well.  There has been some muscle tension/soreness, so lots of soft tissue work and less exercise work.  No AlterG today.  He said the hip is doing really well overall and he did let me try walking with only one crutch.  Since it felt OK, he said it is OK to use one crutch for short distances at home from time to time.  But, otherwise, still on crutches. Sigh. This hip is handling increased weight bearing better than I remember the first hip doing, but this is still a long process.  I am not nearly as wiped out after PT appointments this recovery as I recall from last time, but I do find those days more tiring overall and that it does not take much to wear me out. My body is siltl doing a lot of healing. I clearly recall some aspects of last recovery quite well even without going back and looking. However, it is still interesting to look at last year  Here is the 4-week post from last year. That week was challenging and taught me a lot of caution and has definitely impacted some of my choices this recovery. Experience teaches wisdom.

Copyright © 2017 by Stef. All rights reserved.

Three Weeks: Tedious and Tiring

I am now three weeks post-op and I have been in the tedious phase of recovery. Overall, things are still going really well, but everything takes longer. It often feels like all I do is rehab exercises, rest, ice, self-care. But, this is laying the foundation to build on as my body heals and we start working on strengthening and advancing exercises. It is worth taking this stage seriously and supporting my body as it heals. I am intentionally not comparing recoveries between hips, but once I have gotten through each week and written the update, it has been interesting to look back and read my thoughts on things at the same stage last time. Here is three-week update last surgery.

I posted the two-week update early enough that I missed being able to mention that I went to a picnic that evening. It was so good to get out for something other than medical appointments, moving, or even the swimming, which is partly rehab oriented.  This was fresh air, seeing people, an actual social function.  I still do not do well with lots of sitting, so we (my sister, not me), hauled my zero gravity chair along.  I still wore out--too much sitting--even with my own chair.  But, overall, it was worth it.

There is much that is going well.  I am sleeping through the night for the most part, most of the time.  Both hips are totally pain-free!  This has been amazing!  After surgery a year ago, I was so excited when first hip was pain-free, but second was not....and when it hurt would remind myself at least the first did not hurt.  So, now the novelty is neither hip hurts!  I am also still adding in new things I can do.

Crutches. I think it took longer this time, but still ran into issues with the crutches flaring up shoulders, neck, back, wrists, hands, etc. All are tired by evening and all stiff/sore when I wake the next morning.  I knew this was a possibility and tried to be careful and avoid it. I am still doing PT exercises for neck and shoulders, plus have already seen chiropractor to get things addressed.  For now, choosing to rest and stay off crutches/feet as much as possible. This means going nowhere non-essential, doing nothing non-essential, hence things getting even more boring.  PT and pool are considered essential as the outcomes are worth being up and on crutches to get there and back. I do have and use a walker as well, but the walker is harder to maintain as normal of gait, just as stressful to shoulders, wrists, hands, etc. It is also more awkward to maneuver. Lots of reading and crocheting are happening during this enforced downtime.

Brace. It has still never yet restricted my movement.  It does throw off my walking with crutches and wear me out faster.  I was supposed to wear it 2-3 weeks per discharge info, but surgeon had told me pre-op 2 weeks or until sick of it.  It is not that bad, so not sick of it. However, not convinced it is actually helpful in my case and may actually be contributing to some issues. Not sure. Initially, I thought the more tiring days were from being up more; however, it seems both hips, but especially surgical side, are more tired/sore on days I wear the brace whether up more or not. I think it is the extra weight from the brace and that I have to be careful to avoid catching crutches on it, so gait is off even more than from just restrictions and crutches themselves. Anyway, I am now three weeks post-op, so can officially be done with it based on discharge info.  I have not been wearing it the past few days already anyway and quite a bit of the stiffness/soreness calmed down again.  Thoughts: I suspect the brace would have been more helpful if I had not already known how to stay within restrictions.  I recall last time thinking early on maybe a brace would have been nice to prevent going outside of restrictions. However, I decided with time it was better not to have a brace as it forced me to be continually mindful of how I moved.  Between that experience and that most of the restrictions are things that were painful pre-op, thus had been avoiding already anyway, I know how to stay within restrictions without a brace to remind me.

I have still not tried driving this time.  I am a really weird mix of super cautious, with definite limit pusher.  However, multiple surgeries and other experiences have helped teach me patience and when to be cautious versus when to push limits. Right after surgeries I tend to be more cautious, almost afraid to do anything. As I recover, curiosity starts to take over and I start testing things out of curiosity to see how I do. Being in the pool is something relatively safe to test and push. Driving is not. I had enough trouble driving pre-op that I am in no hurry to try too soon and risk a set back.  I also still do not like sitting up fully, so prefer being reclined.  I can sit better than pre-op, but still not really comfortable. I do not want to undermine recovery, so sort of waiting until sitting is more comfortable and hip feels stronger, less sensitive to little things.

Being in water remains my best help.  It helps relieve the issues from crutches--neck, shoulders, back. I can swim full laps even though it is all only arms, no kicking yet. I can stand in neck deep water, do simple PT exercises in neck deep water. It feels so good to be in the water and able to move better. Came back from the pool at 2.5 weeks post-op after not wearing the brace or compression sock for the first time when out and both hips felt so good I stood at the bottom of the stairs trying to remember which hip I was supposed to be protecting.

PT with new therapist here is going well.  I had been really apprehensive about this, but also really optimistic.  I had been with my Iowa PT for 4.5 years and through multiple surgeries and other tough issues. I credit her as well as my surgeon with how well my left hip has done. It is scary starting over with someone new who does not know me or my body and whom I do not know.  But, so far, going well.  He seems to really know rehab, is open to what I know of my recovery last time as well as the input of both the MN and IA PTs, but also giving me new suggestions that are helping.  Sort of funny incident during second appointment, I mentioned how tight my thigh on operative side was.  He did some manual soft tissue work, commented I had some knots and that since I was not squirming at all with the pressure he was using, he was going to try something else, so then got out Astym tools telling me what they were. I'd had Astym and Graston before and they worked well.  Anyway, hip and leg felt so much better after he worked on them!!!! Grateful and more hopeful again.

Today marks three weeks post-op and is a next step in rehab.  I get to start adding more weight onto the surgical side, get to relax some of the restrictions, as mentioned above I get to be done with the brace, etc.  I have already walked in the pool in neck deep water, but am now cleared to walk in chest deep water and to do PT exercises in chest deep water.  I got to try the AlterG (anti gravity treadmill) at PT this afternoon and that was fascinating to experience and gave valuable feedback as there were cameras so I could watch and adjust my gait. More soft tissue work again, too. PT could tell things were less tense than last time, but still had knots that needed worked out. He is hoping that more weight bearing will help with that.  He also agreed that my observation about the brace possibly having contributed to issues made sense and was probably part of what had been going on. Anyway, I am ending week three and entering week four far more optimistically than even just a few days ago.

So grateful for how well things are going overall, trying to keep my focus on the positive aspects, but it has been challenging and discouraging at times as well. My theme for recovery needs to be kept in mind: 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 needed to let my body heal at its own pace.  I need to stay focused on the end goal--full recovery.

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.  Hebrews 12:1-3 (NIV)

Copyright © 2017 by Steph. All rights reserved.