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.