Trusting God When the Unexpected Happens

It has been a month since I checked into the hospital for a routine abdominal gastrointestinal surgery. Plan was I'd be in the hospital anywhere from a few days up to a week. Well, at a week post-op, I was still nowhere near ready to go home. All attempts at advancing diet kept ending up with me back on clear liquids only. A PICC line (peripherally inserted central catheter) was placed and parenteral nutrition (nutrients via IV) started. Days stretched out ever longer. I started having more pain, especially at night, running fevers at night. At one and a half weeks post-op, my surgeon stopped by to let me know he was planning emergency exploratory surgery, hoping to have me in the OR within the next hour. Oh my! That surgery was long. I recall very little of the final day before that second surgery, or the initial days afterward. I know I woke with even more IVs and tubes then I'd had beforehand. I was uncomfortable, sore, tired. It turns out I had infection from perforated bowel. My surgeon cleaned it all out, resected part of my bowel. I was in ICU for a week and half. I was sicker than I had known. In the adult inpatient unit, I had been allowed to take myself for walks, IV pole and all. In ICU (even step-down ICU), I was not allowed out of bed without assistance. Early on, I needed assistance, but as tubes slowly were removed, I slowly got stronger, slowly became more able, but still not allowed to do much. By that point, I was getting bored, but still had no energy to actually do anything. TV was only temporary distraction, puzzles took too much thought, reading was too hard to hold the book or focus. That left me with iPod (music) and phone (Facebook, text messages, email, etc.). Even messaging took too much effort at first.

Once I was recovering in ICU, we started marking progress by removal of lines and tubes. At one point I had two IV poles. They later found a pole that would hold all of the IV pumps. We teasingly it called it a Christmas tree. 

IV "Christmas tree"

I loved the visits from my family! One or more of them visited every single day! A friend from church also visited. I was uncomfortable enough and things happened unexpectedly enough that I actually discouraged most visitors other than family as often did not feel up to seeing others. As an extreme introvert, I go into performance mode with visitors and that was too exhausting. Anyway, so grateful for my family! Also so grateful for friends praying, sending notes, sending flowers. One family sent a Christmas tree with lights! It made the room so much more festive and made a great night light. Dad bought ornaments to decorate it.

Christmas Tree!

Christmas Eve, our family had a precious time together in my room in ICU--reading excerpts from prophecy and the Christmas story, singing a Christmas carol, praying together. Earlier in the afternoon my sisters had brought my dad's stocking and the gifts to stuff it with, along with hot cocoa. They kept our tradition going even with me in the hospital.

Christmas Eve sisters' tradition at the hospital

It was hard being in the hospital so long (three weeks) just from perspective of inactivity, loss of muscle, etc. It was even harder being there when normally, I'd be home preparing for Christmas. I had to learn to let go of ideals, refocus on what was important. Apparently, I'd had a bit of a close call, so was grateful to be alive and well cared for, grateful for family coming. 

Christmas morning found me still in ICU, still attached to IVs, still with a PICC line in place, etc. However, the IVs were stopped that morning, and, my surgeon determined I was OK to go home! Best Christmas present ever! When the PICC line was pulled, my nurse, knowing I was curious, asked if I wanted to see it....yes. Crazy to see how long and know that the end was by my heart. 

Going home was exciting, but also a lot of work. I was thin and weak from the difficulties eating, and the time in bed for so long. I had to have help. I stumbled on the second step into the house from the garage. The flight of stairs to my room felt like trying to climb a mountain and I had to hold onto the wall for support. I was independent with some things, but needed help with others. Still, so special to be home for Christmas!

Home for Christmas!

One week later. I saw my surgeon to have staples removed, the retention sutures (precaution for Ehlers-Danlos syndrome weak, compromised skin and tissues) stay another week. He said incision looks good, that I was looking better. He acknowledged he was concerned about me, but glad to hear things were going well at home. 

Eating is advancing slowly. I still cannot handle much volume at a time, so tend to eat small amounts every few hours...including overnight, as hunger wakes me. 

I have been sleeping better since being home. I am still not sleeping through the night, but finally had a couple of nights of not needing a snack in the night. This is good! I am hoping this persists!

One of the specialist appointments that was supposed to take place two weeks post-op first surgery, had to be rescheduled since I was still in the hospital. This was with hematology regarding a genetic mutation involved in clotting. However, while in the hospital, platelets reached critical high, so surgeon called hematology in for that. The Nurse Practitioner recognized me because of my smile--it is my mom's smile. This hematology group is where my mom had her cancer treatment when she treated locally. When I saw the hematologist after I was home from the hospital, instead of shaking my hand when introducing herself, she gave me a hug telling me I looked like my mom. She asked how my dad and siblings were doing, remembering them from Dad going to appointments with my mom and from Mom talking about them. My mom passed away 4.5 years ago but she is still remembered. I look enough like her, with her smile, that they know I am her daughter. 

We all have my mom's smile!

December looked nothing like I had anticipated. I had intentionally scheduled surgery for as soon as possible after Thanksgiving, knowing it would take a while to get eating normalized and wanting to fully enjoy Thanksgiving dinner and Christmas dinner and treats. I had hoped to be back to normal at least with eating by Christmas. However, that did not happen and eating still has a way to go to get back to normal. While some may think there is little good in what happened, I choose to say there is much good. The infection was caught, second surgery took place in time to prevent things getting even worse. I had excellent care while in the hospital. I had supportive family praying and visiting, supportive friends praying, sending notes, sending flowers, etc. I had a chance to stop and reflect on what really matters. It is not the traditions. It is that Christ gave up everything to come to earth to save the very people who caused Him pain. No matter how uncomfortable I was after surgeries, I could look to Christ's example and all that He endured....on my behalf. 

John 3:16 (KJV)

For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.

Isaiah 9:6 (KJV)

For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace.

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

Shoulder Rehab Progress: 3 months post-op

This is a bit late. I had it mostly written, but things got crazy. I am now three months post-op left shoulder and it is doing really well! I am so grateful and relieved. In the past month, more activities have been added back, PT rehab advanced, etc. I saw my surgeon right at 3 months and he is pleased with strength, range of motion, etc. He has no concerns. He said my shoulder will continue to make progress for several more months, but more slowly. The stiffness with internal rotation is completely normal and internal rotation is usually slowest to come back. He also cleared me to start trying to use my arm with swimming!

I had been dreading the travel for surgeon follow up for 6-week post-op check. It was a rough trip, but I survived. However, back pain never calmed after that trip, but rather has continued to worsen. Thus, I was dreading this trip even more. My dad offered to drive me! Even with him driving, being able to ride with seat fully reclined, it was not a pleasant trip. But, it was also very clear I would not have gotten through it if I had tried on my own. So grateful he was available and willing!

I also saw the physical therapist I have seen to check hips before hip surgeon appointments. This was a problem-solving mission. I was pretty sure hips were fine, but back and SI joint pain so severe, so similar to some of the compensation from pre-op hips, that I wanted the perspective of someone who was not dealing with the entire mess, who knew me, knew hips, knew Ehlers-Danlos syndrome complexities, etc. She was so helpful! She could listen to me tell about the overwhelming, overlapping issues, check what my body was communicating, then help prioritize next steps based on her observations, what she knows of EDS. So, grateful that hips got another clear report and confirmed that I can still tell (usually) difference between joint pain and muscle compensation.

There is a lot going on. I have had numerous specialist appointments, more MRIs, other testing, still more to come. I have been given partial answers, but we are still working on sorting things out. I am desperately hoping we can get any additional testing that is needed done as soon as possible so we can proceed with next steps for treatment. I am trying so hard to find the positive, but the reality is that I am not doing well and do not feel well.

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

Shoulder Rehab Progress: 2 months post-op

Two months has sure gone by quickly! The past month has been challenging. Rehab is going well, my shoulder is recovering and healing well. However, difficulties with insurance led to taking a break from physical therapy out of necessity. We are trying to touch base base every couple of weeks to make sure I continue to make progress, do not lose ground.

Today is exactly two months since surgery. Today was also first physical therapy appointment in 2.5 weeks. I was not sure how it would go as not sure how well I am able to keep forward progress on my own. Also, my shoulder has been more achy lately, but so has the rest of my body.....rainy weather, getting colder. The appointment went well! He is pleased with my range of motion and strength. Strength is advancing nicely. Range of motion is not progressing as quickly, but no concerns at this stage as it is nearly normal ranges. This was such a relief to hear and so encouraging.

I saw my surgeon for 6-week post-op check at 5.5 weeks post-op. He was very pleased with how I am doing, how well my shoulder is healing, how well incision scars look. This was encouraging to hear! Also, I drove the entire distance myself. It was approximately 900 miles round trip and I did entire trip there, part way back same day, then the final part the next morning. My shoulder handled things fine. My back not so much. Still recovering, but it may also be partially post-op tiredness, pain flare.

In spite of the flare, my shoulder is regaining a lot of ability it had lost due to pain prior to surgery. I am actually using that arm! I can walk without my arm being braced or taped and it does not hurt! I can use both hands to lift and carry things. I have to be careful, but as long as I am, my shoulder does not hurt! I am sleeping so much better than prior to surgery, too. I can get regular shirts and even light compression tank tops on and off normally! I had not done so for months prior to surgery--rather have lived in tank tops because I can step in and pull them up like pants. Super easy. Pre-op difficulties and finding solutions meant that post-op was not that bad as I had already figured out quite a bit. Still, it is exciting to be regaining ability I have not had for months. I am grateful and relieved.

I am still not allowed to use my left arm for swimming. Thus, I am still only kicking laps in the pool. However, I ditched the kick board. Legs are still primary source of power, but I am moving right arm a bit to try to mimic more normal motion. Making this shift, plus that it has been weeks now of kicking only, means I am getting faster. I am hoping that by the time I am cleared to try gentle arm motion, that my legs are strong enough to do the work, allowing arms to just go through the motions until my left arm and shoulder are stronger, ready to actually work.

Overall activity has been decreasing over the past month. This is a result of flare--pain is high, fatigue has returned, still worsening. I simply do not have the capacity that I had. This is not hips or shoulder limiting, but lacking the actual energy. Surgeries have usually resulted in a severe flare of fatigue, higher pain around one month post-op. We now figure it is MCAS (mast cell activation syndrome), causing flares. We took precautions with surgery and the first few weeks went incredibly well. But, I still hit a flare around five weeks post-op. It should ordinarily be improving again, but thus far, only seems to be worsening. Previously, this has been addressed with prednisone burst/taper to break the pain cycle. However, we still have no date on next surgery and allergist managing MCAS does not want to risk prednisone close to another surgery. Although, I would argue that if we don't, my body will not be ready to withstand another surgery anyway.

It has been a challenging month, but most of the challenges have been related to other chronic issues, rather than surgery or recovery. It is frustrating when working so hard to get through each day, to then also have to fight what can feel like huge battles to get the medical care needed. Primary care physician and shoulder surgeon had both given new orders for physical therapy, only for PT to be denied when they tried to authorize it. I have fought insurance battles before. But, they are exhausting, draining. Additionally, we are working on trying to sort out other issues, figure out how to prioritize, and what to do. The result is I have been overwhelmed with everything. I am tired. It is requiring more effort to keep my focus on what is going well, to trust fully in God, knowing He is sustaining me.

"From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I." Psalm 61:2 (KJV)

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

Shoulder Rehab Progress: 4 weeks/1 month post-op

I am four weeks post-op shoulder, nearly one month post-op. This past week has been some better. For one thing, being back in the pool has helped immensely! My shoulder is calming down, gaining better motion, the rest of my body is calming down, etc. I strongly suspect that if I had been allowed to be in the pool earlier, we might have avoided some of the shoulder stiffness and soreness and some of the global flare. My neck and back are still pretty flared, easily irritated. For now, just grateful I can be in the pool now and that it does help so much! I swam laps until the day before surgery, was cleared to kick laps with a kick board at three weeks post-op, not allowed to use surgical side arm at all yet. However, in the first week of adding back kicking, already back up to a mile of consecutive laps! It is slow, but I can do it and it feels great! Pretty excited and encouraged.

9/5/18: 4 weeks post-op
Some new milestones! I had a physical therapy appointment at four weeks post-op. We added more active motion and some weight! It may only be 1-pound and 2-pound weights, but it is progress! Passive ROM work by PT stretching things out is some better, but remains very uncomfortable in some positions. He commented that it felt good--meaning better than it had been. I retorted it did not feel good--meaning it still sort of hurts. I have only been to the pool three times since being cleared to submerge shoulder. the first time was with waterproof bandages still as a precaution. However, the last two times, no bandages. Last time, I was able to kick an entire mile with no breaks! Hips are doing fine. It was not fast, but I was amazed I could do it. I knew from second time that I could do total of a mile, but that had been pretty broken up. This time, I just started with a goal of a half mile, but since that felt great, then just kept going....for a full mile! Pace was not that great, but I did not care. So excited to have been able to kick a full mile and have it feel good!

This is kicking only, but pretty exciting for soon post-op!

Also, pretty impressive weekly total for 3-4 weeks post-op. 

Not too bad for a single day just shy of 4 weeks post-op!

Reality is, my body needs to move.

Yes, I am sleeping a lot! My body is working hard to recover. 

Love what this t-shirt says in light of post-op shoulder restrictions!

I can get the SI joint support belt on and tight by myself!

Also, loved getting back in the pool! Waterproof bandages as precaution. 

Yes, still using kinesiology tape to try to calm neck and back. 

I can get the SI joint belt on by myself. I can get regular t-shirts on/off by myself. The "off" still makes me stop to think, fear getting stuck, but I can do it, albeit slowly. Still mostly living in tank tops as easy. It is also easy to layer a lightweight hoodie over the top if need the warmth.

9/7/18: almost 1 month post-op (tomorrow)
I had another physical therapy appointment today, with physical therapist being pleased with progress and how things are going. My shoulder is gaining strength, range of motion. It is still weak, and a little stiff. However, pretty normal for this stage of recovery, nothing concerning. He asked if surgeon had said anything regarding when I'd be ready to work. No. Plus, we think I am heading into more surgery, still. We ended up discussing how to keep me progressing with shoulder rehab through another major surgery. I have second opinion consult next week, see shoulder surgeon the following week and need his input on when he thinks the shoulder is ready.

My back has been so uncomfortable that I pretty much have to keep moving. The rainy weather has made things challenging for walking, but desperation means I have walked in the rain this week. Yesterday, I had planned to swim but the pool was closed for repairs. It was a gorgeous day and not raining! So, I went for a walk! I am back to pre-op pace and distance with walking again! Walked again later as back just hurt and walking helps loosen it up. Then, later yet, my sister proposed looking at the flooding, so we went for a walk together, taking the time to really look at things, take photos. We went as far as we could until the path was under water. We could have gotten further if we had gone up to the road, but we knew eventually that would be under water too. The driving entrances into the park are all barricaded.

The partial daily summary is from yesterday--had to keep moving.

The weekly summary is the past week. Not too bad!

Photo of part of Holmes lake taken from the top of the dam. 

Part of trails under water, parking lot no longer is, but clearly was. 

Sign posts on the beach are now in the lake. 

Overall my shoulder is doing well! My other shoulder is staying pretty calm in spite of working for both. My hips are doing great! But, my neck and back and just angry, irritated with entire situation. I have been back in compression shorts for quite some time--one of my early skills, was getting compression shorts on with one hand. I am now back in the SI belt as well and that does help some. We have been taping, are experimenting with different ways to tape, but surgery is a MCAS (mast cell activation syndrome) flare trigger and my skin is more reactive, thus we have not been able to tape as much.

I went swimming (kicking) again! We are trying a different way of taping.
Tan lines from taping shoulder pre-op. Also, no waterproof bandages anymore! 

I wore the t-shirt to PT as it seemed appropriate--he agreed. 

I am grateful recovery is going so well thus far. Just the last day or so, find that I feel pretty normal, am using the arm more, though it is still restricted.

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

Shoulder Rehab Progress: 2 & 3 weeks post-op

I wrote the 2-week update at two weeks, but had a rough day and never got it finished and posted. So, I am combining weeks. Also, I had an interesting realization....I am regaining ability to drive for the third time in a year, was cleared to be in the pool again for third time in the past year, fourth time in 13 months. And....hoping third time is the charm!? The first time I lost ability to walk, I became grateful for every step as I relearned how to walk. The first time I lost ability to drive, I was so excited to regain the ability. Thus, I do not take skills, abilities for granted. It is difficult to keep losing, having to work to regain the same things over and over again. However....so grateful I am regaining, not permanent loss at this point!

Two Weeks
I am two weeks post-op today. It has been a rocky week and a rough day. My shoulder has been more sore and PT could tell today that it was more stiff and I was more hesitant and reactive with having it moved. Today was first time trying very basic active motion and it went OK, but oh, my arm felt like dead weight. I am cleared to walk more as pace is nearing pre-op pace, but duration and distance are still less than pre-op. Incisions are not ready to be submerged yet....but, when I was asking PT how big of concern when I am just asking to walk in the pool, I have waterproof bandages, and I was in the pool with incisions submerged five days post-op hip, he actually agreed with me, had already wanted me able to be in the pool earlier since water aids in overall management of everything, plus aids rehab. The other item that is waiting on incisions to be well-closed, is restarting NSAID. After watching how much I was struggling today, and after he felt how much more stiff things were, he said go ahead. He thinks since I have been on it with past surgeries, am full two weeks post-op, it is not a big concern, I clearly need help.

Three Weeks
Today is three weeks post-op. And, steri strips are gone! I had pulled them one off of one incision yesterday knowing the incision looked fine, but PT checked and pulled the rest off this afternoon. He officially cleared me for pool, including submerging incisions! We both agreed I should continue to use waterproof bandages just to be safe, but he thinks incisions are good to go. Also, just getting into the first most basic isometric exercises. Shoulder is surprisingly stiff, sore again after starting to ease up later last week after restarting NSAID. PT can tell how stiff it is and how uncomfortable for me. He is hoping more pool work will help with that since my body has typically done better in water. I am hoping so as well. I am also hoping getting back to more of the activities I was doing before will help calm some of the more global flare. The shoulder is feeling better than pre-op, but has less ability and when PT pushes limits of allowed range of motion, it is not pleasant. I am sleeping longer and better than pre-op. Grateful for sleep!

Why the silence, delayed updates? Well, I found out right at two weeks post-op that I need another major surgery. I had really hoped shoulder would be last surgery for a while. So, I was taken by surprise, caught off guard, feeling overwhelmed. Nothing is scheduled as all involved know my body has healing and recovery to do for shoulder before we consider anything else. The tentative plan is get shoulder surgeon's thoughts on what he thinks is reasonable time frame for my body to recover from shoulder without compromising recovery at 6-week post-op check. Then schedule next surgery accordingly. In the meantime, scheduled for second opinion with another surgeon for the proposed surgery.  (This at recommendation of one of my other doctors who pointed out every surgery is complex with underlying connective tissue disorder, thus second opinion simply makes sense.) Working on coming to terms with the fact my time line for goals has again been altered.

I am grateful for what is going well. The shoulder is healing, incisions are closed without some of the issues encountered in past. I have support as I work to rehab my shoulder, manage ongoing recovery for the rest of my body, and prepare for more surgery. I am making gains with physical activity ability! I am walking at near pre-op pace and distance. I am slowly adding back what hip rehab exercises are doable without interfering with recovering shoulder. I can do more daily tasks. I can drive--at least locally. I can walk in the pool and do hip rehab exercises in the pool, was even allowed to do a tiny bit of very simple shoulder work. I was just cleared to try doing more gentle shoulder exercises in the pool, try kicking with kick board! Have not tried yet, but hopeful.

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

Shoulder Rehab Progress: 1 week post-op

Hard to believe I am already more than one week post-op shoulder arthroscopy. The surgery went well, no surprises, not too involved. Recovery is going well. But encountering other challenges, so it has been an overwhelming and at times discouraging week.

First PT went well! Good motion, no actual pain, though I sure knew when it was reaching end of comfortable range of motion. PT thinks this recovery will go as well or better than hips! Optimistic!

I am sleeping better than pre-op, as pain is less than pre-op. Also, in early stage of healing, so more tired. I am able to be weaning from the sling, but still not allowed to do anything with the arm/shoulder.

Ten days post-op, just back from a walk,
plus summary for past week, not too bad!

I also happen to be 13 months post-op right hip, 25.5 months post-op left hip. PT commented that hips are doing better than anticipated considering travel, surgery, broken routines, etc. That was encouraging! We have officially shifted to shoulder rehab, though hips will still be addressed as needed.

So grateful! God is good!

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

One Year: Grateful!

I made it! One full year since the surgery on my right hip, and just over two years since surgery on my left hip. I am pretty much back to normal ability--my overall endurance and energy level are more limiting than my hips are. I saw the physical therapist and my hip surgeon on the one-year anniversary of surgery. The therapist was pleased with how I am doing, my ability, etc. She said for being one year post-op, I am doing well, for also have Ehlers-Danlos syndrome, I am doing very well, for also being several months out from a car accident, I am doing excellent, and told me my surgeon would be pleased. When I saw my surgeon, he was very pleased with how well I am doing! He has no concerns. No need to follow-up. He would like to see me, get new x-rays, just check things, but said anytime in the next 1-3 years is fine. Such an encouragement and relief to hear this, even though it was anticipated. Local physical therapist had been telling me muscle tone was better--more strength, atrophy resolved, less spasm and tension, etc. The evening of the 4th of July, my sister, friend and I had gone over to the nearby lake and climbed to the top of the dam to sit and watch fireworks over the city--amazing view! Anyway, instead of taking the bike path that angled alongside to the top, we just went straight up the side--half running! When it down-poured rain, we ran down the side to the car. Would never have dreamed of being able to do this a year ago! PT said if my hips can handle that, then I am good to go! He was anticipating a good report from surgeon, and I did get a good report! This is a huge answer to prayer! I have been a complex case all along for various reasons and my hip surgeon is actually the surgeon I saw for second opinion. So grateful he could see through the mess my first hip was to what it could be. That he supported me through every part of pre-op, surgery, rehab, evaluating my other hip, figuring out timing on it, repeating surgery and rehab process. He and his team have gone above and beyond! I have also had amazing physical therapists who did the hands on, daily rehab with me. So grateful for them, their expertise, patience, willingness to support me and problem-solve no matter how complicated things were.

The trip itself was a definite test of my ability and endurance. I am so thankful my sister was able and willing to go with me and drive! We covered 1000 miles, five medical appointments, time with friends, etc., in less than 48 hours! Fun, profitable, but exhausting! So grateful for safety traveling, for how well all of the appointments went, for those who showed us hospitality, or helped in other ways, to get to meet others.

My shoulder, and ensuing compensation issues, is the biggest limitation at present. I did also see shoulder surgeon on this trip, and we scheduled surgery. So, although the hip recoveries are going well, it looks as though I will be starting shoulder surgery recovery soon. I am sure hips still have more recovery, but this sort of feels a bit like closing down the aggressive hip recovery phase, moving into hip maintenance and more aggressive shoulder surgery, recovery, rehab phase.

I have far better ability at one year post-op right hip, than I did one year post-op left hip, but that was because right hip was painfully limiting. Now, hips do not limit me. A year ago I could barely walk, but was swimming daily. Now, walking is nearly unlimited, but swimming is severely restricted. Last year, at one year post-op left hip, I already knew I was scheduled for surgery on right hip. This time, at one year post-op right hip, I am already scheduled for surgery on my left shoulder.

So grateful to so many who have supported me on this journey! I know it is not over, but am so thankful for the progress! More hopeful now than prior to both hip surgeries, going into shoulder surgery with hope.

For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. But if we hope for that we see not, then do we with patience wait for it. Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God. And we know that all things work together for good to them that love God, to them who are the called according to his purpose.  Romans 8:18, 25-28 (KJV)

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