Here I am 8 months post op from hip surgery and finally feeling as if the end is in sight. Things are going really, really well with respect to rehab. The repaired left hip is at or beyond the ability it had prior to issues starting, not just prior to surgery. I am amazed at what it can do and what it can handle. I can walk, sit, swim, do normal daily tasks, etc. It will get sore at times as we are still increasing and advancing things in rehab, but it is just muscle soreness. I have been told the hip has good strength and full normal range of motion again. The bothersome trigger points are gone, compensation issues lessening, gait better than it had been in years! The other hip is a different story. It had been getting gradually worse again, the injection completely lost effect, and things are pretty challenging again. I am being encouraged to keep walking and swimming, but with rehab we are shifting back to single leg exercises on op side again to give the other a break. It can still handle some exercises, but is becoming selective. We want to try to keep it strong but without irritating it any more than it already is. Walking hurts, but I can still walk without limping. I do not like restrictions, or having to modify things, but also realize that this is necessary for long term. It is worth it to me to decrease activity gradually in order to be able to keep doing some activity, than to push through at current level and lose the ability completely. I used to call it a "controlled slide" before surgery with the left hip, as injections would let me increase ability temporarily for the duration the injection was in effect, and losing injection effects would find me again slowly backing down again. This is now what we are doing with the right hip and my shoulders.
I was finally able to get the left shoulder injected and calmed down! So much better! However, right shoulder has the same issues, and although PT told me she thought the orthopedic surgeon could inject two joints at the same time, I was told by the surgeon he could only inject one and I had to choose. Difficult decision, but opted for left shoulder since it had been problematic longest and chose to optimistically hope right shoulder would maybe calm with time. (More on this later....see further down.) Swimming pace and activities are still decreased to protect shoulder(s). In hindsight, it almost seemed silly to only inject one shoulder when both cause trouble. But, ever finding the positive side, realized this means I do still know my limits even when pain is out of the equation for one shoulder, as the other lets me know what both can truly handle.
This is a potentially dangerous thought track to follow, but I keep wondering what would have happened if we had just repaired the left hip three years ago shortly after the pain got severe. Would the left shoulder have gotten injured two years ago? Would the right hip have gotten injured a year ago? Would the right shoulder have gotten injured several weeks ago? All have been result of compensation issues. Both the right hip and left shoulder were directly related to left hip. Right shoulder (the second one) is probably from right hip getting worse. I have underlying bone structure issues that make me more susceptible to impingement issues, but no one knew that. There is no way to go back, I can only go forward from here. However, it is worth thinking through what has happened over time from trying to keep going with injuries unresolved. I was told I am not a good candidate for surgery for either shoulder because of the underlying structure issues that are contributing to the problem. I do not know what the plan is with the right hip. I had been hoping to avoid surgery, and trying to focus on rehabbing the left hip and moving on with life, but right hip keeps intruding itself upon notice and I am becoming less optimistic. I am really not sure how is best to manage the multiple issues without making things worse.
There have been a few more medication trial and error experiments that have only discovered more things that ether just do not help, or actually make things worse. Pain issues are not particularly well managed at present. Sleep has become a major challenge again as well. Sleep has been almost non-existent some nights, broken and random other nights. Just impossible to get comfortable. Having left hip no longer painful at night for months now, left shoulder calmed down via injection has helped, but still have painful right hip, right shoulder, neck, back, etc.
Other adventures this month include a pinched nerve situation with pain radiating down my entire right arm. I knew it was a nerve issue, knew pretty much what to do, employed every strategy I could think of, plus what others suggested. Battled all day long, nothing could do much more than take the edge off. Finally, by evening, called the nurse hotline seeking additional suggestions, and was promptly sent to the emergency room because it was arm pain and arm pain can in some cases mean bad things. But, normal EKG ruled out cardiac concerns, doctor agreed with my guess it was a pinched nerve. So anti-inflammatory and muscle relaxant injections and sent home. Ever the optimist, I soon realized that the injections were helping not only the nerve pain in my arm, but also the shoulder and hip pain! I slept that night! Finally! *Disclaimer: I do not recommend adding new pain issues just to get sent to the ER for injections for a couple of troublesome joints. It is not worth it! Especially when the injections wear off within a day or so and pain gets out of hand again.*
A couple of days later at my regular appointment, PT checked the painful right arm/neck/shoulder and commented I'd had both shoulders injected? No, I had only been able to get one done, and had chosen left shoulder, and was starting to rethink and regret that. Sigh. There was no way for anyone to know what was going to happen. It is challenging with this being dominant side arm. I had always been grateful with the left shoulder that at least it was not dominant side....then right got bad too. That was part of what made it difficult to decide which shoulder to have injected. Left had been in bad shape longer, less optimistic of it calming down without injection, but right is dominant side and I use it more.
Whew! Crazy month! Lots of good progress with the recovering hip. Loss of progress almost everywhere else, but that is what it is and I am grateful the hip is doing well in spite of other challenges. It is holding strong and not getting drawn back into the rest of the mess. This is huge progress! The current mess possibly sheds insight into what happened that did flare up left hip a few months ago--flare elsewhere that caused compensation issues in the hip. I remember being puzzled at the time at what seemed similar, yet different, to old patterns. This time is very similar to then except hip is not really involved this time. Huge progress! From left hip seeming to be what undermined management of everything else before surgery, to left hip being able to withstand the effects of everything else being flared! Wow! The ER trip was actually just this past weekend, the injections have lost effect, things are challenging. Not really sure from here, but hopeful we can figure something out. If not, then learn to live with this as new normal until things change again. Hope is essential.
And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 2 Corinthians 12:9
Copyright © 2017 by Steph. All rights reserved.
Wednesday, March 1, 2017
Saturday, February 4, 2017
Surgery Recovery Tips and Tricks
I have been working on this post bit by bit for months. I have had several surgeries of various types and have learned some universal recovery tricks as well as some more specific to type of surgery. Recovering from surgery can be challenging, but there are ways to make it a little easier.
Something many may not realize, is that recovery is as much mental and emotional as it is physical. Yes, the body has to heal from the trauma (intentional, controlled trauma, but trauma nonetheless), but it takes mental and emotional strength to work through the restrictions and limitations patiently. After recovering from a few prior surgeries, I knew what to expect in general when recovering from surgery. I have always prepared for surgeries by having things caught up with work and school, having meals prepared, stocking up on groceries, having laundry and cleaning all done right before hand, etc. This allowed me to feel free to just focus on recovery in the first days without worrying about anything else. However, in addition to this, with the last two surgeries I also chose to spend the final day before surgery celebrating everything I could do--even if it was partially restricted. I knew I would lose all/most of that ability the next day. However, the loss would be temporary and I could regain it back. Thus, after surgery I chose to view that as my baseline and things could only get better from there. Thus, I found myself getting excited over each regained ability. (I am now several months post op from the hip surgery, still have months to go for full recovery, but I still get excited about things I am being cleared to try again. Funny how things I used to take for granted suddenly become novelties or privileges to be able to do again.)
Mindset and perspective are huge. What happens to me is often out of my control. What I think is my responsibility. I can choose to see the difficulties, or I can choose to find what is going well and take a positive perspective. I am normally looking for the positive side of every situation. Example with choices. These photos were taken without moving anything other than direction the shot is taken.
Pain control. This is very important. If once fall behind on pain control, it can be hard to get back on top of it again. My previous surgeries were really rough in terms of pain after surgery. I learned to set timers on my phone to remind when a dose of pain medication was due, or wake me in the night when a dose was due. It seems silly to set a timer to wake from sleep, but with those prior surgeries, if I did not use a timer to wake me and waited until pain woke me, it was too late and it was miserable trying to get pain back under decent control. With medications, I also recorded time, dose, what medication, etc. every time I took anything. Part of my tracking was done in either notes on my phone or in text messages to myself. With both of the last surgeries I did not need hardly any pain medication, so the tracking was not needed very long. The benefit of tracking was preventing forgetting when or how much I took, accidentally taking doses too close together, missing a dose, plus also provided a record of how much I actually needed--which is probably only of interest to the scientist part of me. I think I was on narcotic pain killers for 2-3 weeks after some surgeries, but only hours or days after the past two. The past couple of surgeries, I possibly did not actually need narcotic at all, but it took me a little while to realize pain was a non-issue. Also, something many may not realize, but medications rarely eliminate pain. They just help decrease pain to manageable level. That was how I realized I did not need the narcotic pain medication with the past couple of surgeries. After the first few hours or so, there was no pain at all, unless I moved wrong. Thus, stopped narcotic. I had so much fear of post-op pain going into both of those surgeries because of past surgery recoveries and also severity of pain pre-op, that I was afraid to let pain get out of control. Thus, was started on narcotic before discharge after surgery, and continued once home until realizing pain was not a concern at all.
General medication tips and tricks from years of chronic pain. Once needing less narcotic, over the counter medications can be helpful. I discovered over time that the longer acting medications meant a greater chance of sleeping through the night. Thus, chose to use naproxen over ibuprofen (both of these are non-steroidal anti-inflammatory drugs, or NSAIDs) and the extended release acetaminophen (aka Arthritis Pain Relief Tylenol or something similar) over other forms of acetaminophen. Also, NSAID and acetaminophen can be alternated, thus as one is wearing off, the other is in full effect. Additionally, NSAID can usually be taken along with the narcotic pain medication.
Ice! Lots and lots of ice. This is partly to help with swelling, but partly pain control. I used ice almost all of the time. I was cycling ice on and off as much as I could. I have always used ice to help with pain management anyway, so after surgery was just increasing frequency. I have multiple types and sizes of ice packs. I potentially have more ice packs than food in my freezer.
Crutches.....I very strongly disliked them by the time I was done with them. Crutches create a whole new world of challenges. With some thinking ahead and problem solving as I went, it was not too bad. Crutches make it challenging to carry anything. Not impossible, just challenging. Bags come in very handy! Plastic grocery sacks are great for carrying all sorts of things. Ice packs to and from freezer. If ice machine, carrying frozen water bottles to and from the ice machine to change out to keep the water ice cold. I had a small bag that attached to the crutches that I kept cell phone, note paper, pen, medications, hand sanitizer, etc. in. That way those items were always with me. With crutches, I did not move very fast. If the phone rang, not within reach, it just did not get answered as I was not going to get to it in time. Having it with me, meant not stressing over missed calls. It also meant if something happened, my phone was with me. I was on my own early after surgery, thus phone was sort of my back-up in case something happened. Having medications on hand should just make sense. Note paper/pen was for taking notes during phone calls, tracking medication dose times, etc.
Crutch tips video (Nebraska Medicine) someone told me about after I was already off crutches but wished I had seen before. Also, what they do not show, was with stairs, turning the second crutch sideways and grasping the narrower part of the frame. I have small hands and simply could not hold both crutches in one hand if using the hand grips on both. I did not trust myself with crutches on stairs well enough not to hold onto the stair railing with one hand. This is why I was "stuck" until PT showed me how to hold the second crutch. Then, I could finally navigate stairs on my own without needing someone to be my second crutch carrier.
Other crutch tips: containers with lids and handles! Coffee travel cup with lid, meant I could carry it without spilling. Water bottle with lid. Microwave safe container with handle and lid--this allowed me to warm up leftovers, put the lid on, carry it to the table on my own. Water cup with lid and straw--great to have by the bed or wherever I was. It made it easy for carrying. All of the cups, water bottle fit in the crutch bag as well (not at the same time). I would carry utensils in a baggie.
This may seem like a luxury, but they were more of an absolutely necessity as my hands were so sore after the first week or so of crutches. I got a set of these crutch pads with bag on clearance and they were definitely worth it!
There are lots of things that require creativity to figure out. That is part of the challenge, but I tend to thrive on challenge as long as not too difficult and as long as it does eventually resolve. Also, I had modified so much before some of the surgeries, that I had a bit of a head start for after surgery.
Copyright © 2017 by Steph. All rights reserved.
Mindset and perspective are huge. What happens to me is often out of my control. What I think is my responsibility. I can choose to see the difficulties, or I can choose to find what is going well and take a positive perspective. I am normally looking for the positive side of every situation. Example with choices. These photos were taken without moving anything other than direction the shot is taken.
I can choose to see the crutches.....
....or, look out the window.
It is my choice. I chose to view the crutches as a tool, and enjoy the view out the window. :)
Pain control. This is very important. If once fall behind on pain control, it can be hard to get back on top of it again. My previous surgeries were really rough in terms of pain after surgery. I learned to set timers on my phone to remind when a dose of pain medication was due, or wake me in the night when a dose was due. It seems silly to set a timer to wake from sleep, but with those prior surgeries, if I did not use a timer to wake me and waited until pain woke me, it was too late and it was miserable trying to get pain back under decent control. With medications, I also recorded time, dose, what medication, etc. every time I took anything. Part of my tracking was done in either notes on my phone or in text messages to myself. With both of the last surgeries I did not need hardly any pain medication, so the tracking was not needed very long. The benefit of tracking was preventing forgetting when or how much I took, accidentally taking doses too close together, missing a dose, plus also provided a record of how much I actually needed--which is probably only of interest to the scientist part of me. I think I was on narcotic pain killers for 2-3 weeks after some surgeries, but only hours or days after the past two. The past couple of surgeries, I possibly did not actually need narcotic at all, but it took me a little while to realize pain was a non-issue. Also, something many may not realize, but medications rarely eliminate pain. They just help decrease pain to manageable level. That was how I realized I did not need the narcotic pain medication with the past couple of surgeries. After the first few hours or so, there was no pain at all, unless I moved wrong. Thus, stopped narcotic. I had so much fear of post-op pain going into both of those surgeries because of past surgery recoveries and also severity of pain pre-op, that I was afraid to let pain get out of control. Thus, was started on narcotic before discharge after surgery, and continued once home until realizing pain was not a concern at all.
General medication tips and tricks from years of chronic pain. Once needing less narcotic, over the counter medications can be helpful. I discovered over time that the longer acting medications meant a greater chance of sleeping through the night. Thus, chose to use naproxen over ibuprofen (both of these are non-steroidal anti-inflammatory drugs, or NSAIDs) and the extended release acetaminophen (aka Arthritis Pain Relief Tylenol or something similar) over other forms of acetaminophen. Also, NSAID and acetaminophen can be alternated, thus as one is wearing off, the other is in full effect. Additionally, NSAID can usually be taken along with the narcotic pain medication.
Ice! Lots and lots of ice. This is partly to help with swelling, but partly pain control. I used ice almost all of the time. I was cycling ice on and off as much as I could. I have always used ice to help with pain management anyway, so after surgery was just increasing frequency. I have multiple types and sizes of ice packs. I potentially have more ice packs than food in my freezer.
This is just a few weeks before the hip surgery. Ice on op side hip; have often had ice on both hips at once, neck and back, etc. I tie ice packs on--that keeps them in place, but lets me move and get things done.
Ask for and accept help! This was one of my biggest challenges as I am incredibly independent. I learned to ask for help--at least some. I also had to learn to accept offered help. I did still change the battery in the ceiling-mounted smoke detector one week post op from hip surgery, but it was because it was late at night and was not sure who to even call at that time of day (and I managed to complete the task without putting weight on op leg at all). With not driving, with crutches, etc. I did have to ask for help for several weeks with rides, help with errands, laundry, cleaning, etc. I could cook and do simple cleaning tasks on my own pretty early, but vacuuming, mopping, carrying laundry or groceries on stairs were not feasible until off crutches and walking pretty well.
Meals. This is something that can be very helpful to prepare in advance, or often others will offer to help with. With one surgery, all of the other students in the lab I work in took turns bringing me meals--so incredibly helpful! That saved me not just meal preparation but from having to go grocery shopping as soon as well. With the hip surgery, I made ahead and froze some things, but had to reserve freezer space for all of my ice packs. I also had a bunch of snack foods in single servings in baggies that were easy to grab and carry even with crutches. One of my favorites after surgery (or any time really) is homemade granola bars. I already did a lot of crock pot cooking and this came in very handy. I can dump ingredients into the crock pot in a few minutes, then it does the work for me. (I have lots of crock pot recipes, too.) How to move the crock pot to fridge once it is done? Easy, scoot bar stool over to counter, lean self against counter, transition crock pot to bar stool, push bar stool to fridge (slow with crutches, but works!), transition crock pot to fridge without putting weight on op leg. Bar stool was an amazing tool for pushing all sorts of things around the kitchen. Office chair worked great for pushing things around living room.
Rest nest. I am not sure what else to call it. Basically think where makes the most sense to spend most of early recovery--bed for me after most surgeries. Then, I had a power strip by my bed that had cell phone charger cord, ice machine, laptop charger cord, anything else, right at hand within easy reach. I already had a night light near my bed, and it is definitely helpful when early post op. I have had enough surgeries and have enough various pain issues that I am pretty well trained to sleep and stay on my back. However, the first surgery before fully trained to stay on my back was tough. Pillows helped keep me in position. Even when trained to stay on my back, pillows were helpful to prop whatever area had surgery--arm, leg, etc. I had used pillows pre-op to keep legs from going into excessive external rotation and continued to use pillows to prop legs as needed the first weeks post op.
Zero gravity chair! I love this! I first heard about it from friends with back pain and since I have back and neck pain, thought it sounded worth trying. I got one just to see and it was so comfortable and so nice to have another alternative position. It worked incredibly well after the hip surgery as well and I pretty much just alternated bed to chair the first few weeks. I discovered a body pillow fits perfectly and makes it super comfy. I also discovered it is very easy to prop up my laptop and work when fully reclined.
Waterproof bandages. This may not apply to all, but is very important to me. I am a swimmer--just recreational and not competitive, but love being in water and do not hurt as much when submerged in water. Thus, one of the hardest parts of recoveries for me have been being banned from submerging incisions. A few surgeries ago I discovered these amazing waterproof bandages that stay on even after being submerged for hours! I asked and was cleared to be in the pool early after the hip surgery as long as I was certain bandages were completely waterproof--and I was certain. These work better than Tegaderm, which I maybe know from past experience from prior surgeries and injections is not entirely waterproof, neither does it always stay on.
Meals. This is something that can be very helpful to prepare in advance, or often others will offer to help with. With one surgery, all of the other students in the lab I work in took turns bringing me meals--so incredibly helpful! That saved me not just meal preparation but from having to go grocery shopping as soon as well. With the hip surgery, I made ahead and froze some things, but had to reserve freezer space for all of my ice packs. I also had a bunch of snack foods in single servings in baggies that were easy to grab and carry even with crutches. One of my favorites after surgery (or any time really) is homemade granola bars. I already did a lot of crock pot cooking and this came in very handy. I can dump ingredients into the crock pot in a few minutes, then it does the work for me. (I have lots of crock pot recipes, too.) How to move the crock pot to fridge once it is done? Easy, scoot bar stool over to counter, lean self against counter, transition crock pot to bar stool, push bar stool to fridge (slow with crutches, but works!), transition crock pot to fridge without putting weight on op leg. Bar stool was an amazing tool for pushing all sorts of things around the kitchen. Office chair worked great for pushing things around living room.
Rest nest. I am not sure what else to call it. Basically think where makes the most sense to spend most of early recovery--bed for me after most surgeries. Then, I had a power strip by my bed that had cell phone charger cord, ice machine, laptop charger cord, anything else, right at hand within easy reach. I already had a night light near my bed, and it is definitely helpful when early post op. I have had enough surgeries and have enough various pain issues that I am pretty well trained to sleep and stay on my back. However, the first surgery before fully trained to stay on my back was tough. Pillows helped keep me in position. Even when trained to stay on my back, pillows were helpful to prop whatever area had surgery--arm, leg, etc. I had used pillows pre-op to keep legs from going into excessive external rotation and continued to use pillows to prop legs as needed the first weeks post op.
Zero gravity chair! I love this! I first heard about it from friends with back pain and since I have back and neck pain, thought it sounded worth trying. I got one just to see and it was so comfortable and so nice to have another alternative position. It worked incredibly well after the hip surgery as well and I pretty much just alternated bed to chair the first few weeks. I discovered a body pillow fits perfectly and makes it super comfy. I also discovered it is very easy to prop up my laptop and work when fully reclined.
Waterproof bandages. This may not apply to all, but is very important to me. I am a swimmer--just recreational and not competitive, but love being in water and do not hurt as much when submerged in water. Thus, one of the hardest parts of recoveries for me have been being banned from submerging incisions. A few surgeries ago I discovered these amazing waterproof bandages that stay on even after being submerged for hours! I asked and was cleared to be in the pool early after the hip surgery as long as I was certain bandages were completely waterproof--and I was certain. These work better than Tegaderm, which I maybe know from past experience from prior surgeries and injections is not entirely waterproof, neither does it always stay on.
Not sure how many boxes of these I have gone through after surgeries and injections.
Crutch tips video (Nebraska Medicine) someone told me about after I was already off crutches but wished I had seen before. Also, what they do not show, was with stairs, turning the second crutch sideways and grasping the narrower part of the frame. I have small hands and simply could not hold both crutches in one hand if using the hand grips on both. I did not trust myself with crutches on stairs well enough not to hold onto the stair railing with one hand. This is why I was "stuck" until PT showed me how to hold the second crutch. Then, I could finally navigate stairs on my own without needing someone to be my second crutch carrier.
Other crutch tips: containers with lids and handles! Coffee travel cup with lid, meant I could carry it without spilling. Water bottle with lid. Microwave safe container with handle and lid--this allowed me to warm up leftovers, put the lid on, carry it to the table on my own. Water cup with lid and straw--great to have by the bed or wherever I was. It made it easy for carrying. All of the cups, water bottle fit in the crutch bag as well (not at the same time). I would carry utensils in a baggie.
Survival tools!
This photo is from ten days post op. Heading to the pool, because isn't that what everyone does 1.5 weeks post op from hip surgery? I loved being in water--gave my entire body a break and no crutches when in the pool!!!! Anyway, this photo shows the crutch pads on the hand grips as well as the crutch bag. I never used the under arm pads as I did not need them and they got in my way. Not shown in this photo but present nonetheless are the waterproof bandages. The bandages stayed put and the incisions/stitches stayed dry.
Grabber. This is optional, I never had one or felt I needed one. Depending on type of surgery, it can sometimes be difficult to pick things up from the floor. I have had abdominal surgeries and hip surgery and those types of surgery introduced some challenges, but I figured it out. One of the side benefits to crutches is using them to pull things closer and even pick things up with the end of a crutch. I also have always picked things up from the floor with my toes, so this random talent came in very handy after surgeries when hard, or impossible, to either bend over or squat down to pick things up.
There are lots of things that require creativity to figure out. That is part of the challenge, but I tend to thrive on challenge as long as not too difficult and as long as it does eventually resolve. Also, I had modified so much before some of the surgeries, that I had a bit of a head start for after surgery.
Copyright © 2017 by Steph. All rights reserved.
Wednesday, February 1, 2017
7 Months
And, back to the roller coaster of highs and lows. What a ride.
My left hip is still recovering and rehabbing well after surgery. I was finally cleared to try running this week! Only in the vortex pool and not in fast current yet, but run nonetheless! At the same time, I still struggle to stand or sit extended periods of time. I do great if I keep moving, but quickly run into issues when still. My right hip has been getting ever more irritable again as the injection continues to lose effect. I have been grateful that the injection is losing effect more slowly than was the case with the left hip, but it is still hard to have pain levels creeping ever higher, annoying pain keeping me awake at night, ability starting to decrease again. Not sure if being cleared to try running in the pool is actually going to last very long....right hip has a way of taking away new abilities as soon as left hip is cleared to try. For now, grateful for progress.
Shoulders seem to be competing with each other regarding which one is worse/better. I can at least write to take notes in class again better. The shoulders do make sleep challenging and some daily tasks challenging. Interesting how much one takes the entire body and its abilities for granted until something starts to hurt or not work properly.
I had been sent to yet another specialist recently to try to sort out some of the guesses for the ongoing, underlying issues, and to hopefully implement recommendations from some of the other physicians. I very quickly ran into a dead end. I am still not sure from here. I am on back-up plans again. At least we had back-up plans this time, though. What is puzzling is how I can have the most normal, healthy blood, but clearly not be either normal or fully healthy. In other words, more negative blood work, another negative exam, even with lots of affirmative answers to questions. I asked how much prednisone + maximum dose prescription NSAID + cod liver oil + glucosamine + anti-inflammatory diet + overall healthy, careful lifestyle would have on masking things...and was not really ever given a good answer. I know prednisone masks things all by itself. I had a negative exam on left hip when I was pre-op but on high dose prednisone to calm down the first shoulder right after I initially hurt it. Prednisone will hide the full reality. That is part of why I got caught by surprise with how bad right hip and left shoulder were when we first started tapering prednisone after surgery last summer. The prednisone had been masking far more than just the severity of left hip pain.
This may seem random, but please bear with me, there is a point to this. I have always liked snowflakes. I was talking with someone recently about the additional meaning of snowflakes to me. Each snowflake is unique. Each person is unique. My body happens to be more of an anomaly. Snowflakes remind me that this is alright. This is just how I am, how my body is. For those who have seen my current Facebook profile photo, it is a paper snowflake I made Christmastime 2015. It is a reminder it is OK to be different, even when it is hard and no one knows how to help me. This also ties into something I shared in a previous post years ago.
Copyright © 2017 by Steph. All rights reserved.
My left hip is still recovering and rehabbing well after surgery. I was finally cleared to try running this week! Only in the vortex pool and not in fast current yet, but run nonetheless! At the same time, I still struggle to stand or sit extended periods of time. I do great if I keep moving, but quickly run into issues when still. My right hip has been getting ever more irritable again as the injection continues to lose effect. I have been grateful that the injection is losing effect more slowly than was the case with the left hip, but it is still hard to have pain levels creeping ever higher, annoying pain keeping me awake at night, ability starting to decrease again. Not sure if being cleared to try running in the pool is actually going to last very long....right hip has a way of taking away new abilities as soon as left hip is cleared to try. For now, grateful for progress.
Shoulders seem to be competing with each other regarding which one is worse/better. I can at least write to take notes in class again better. The shoulders do make sleep challenging and some daily tasks challenging. Interesting how much one takes the entire body and its abilities for granted until something starts to hurt or not work properly.
I had been sent to yet another specialist recently to try to sort out some of the guesses for the ongoing, underlying issues, and to hopefully implement recommendations from some of the other physicians. I very quickly ran into a dead end. I am still not sure from here. I am on back-up plans again. At least we had back-up plans this time, though. What is puzzling is how I can have the most normal, healthy blood, but clearly not be either normal or fully healthy. In other words, more negative blood work, another negative exam, even with lots of affirmative answers to questions. I asked how much prednisone + maximum dose prescription NSAID + cod liver oil + glucosamine + anti-inflammatory diet + overall healthy, careful lifestyle would have on masking things...and was not really ever given a good answer. I know prednisone masks things all by itself. I had a negative exam on left hip when I was pre-op but on high dose prednisone to calm down the first shoulder right after I initially hurt it. Prednisone will hide the full reality. That is part of why I got caught by surprise with how bad right hip and left shoulder were when we first started tapering prednisone after surgery last summer. The prednisone had been masking far more than just the severity of left hip pain.
This may seem random, but please bear with me, there is a point to this. I have always liked snowflakes. I was talking with someone recently about the additional meaning of snowflakes to me. Each snowflake is unique. Each person is unique. My body happens to be more of an anomaly. Snowflakes remind me that this is alright. This is just how I am, how my body is. For those who have seen my current Facebook profile photo, it is a paper snowflake I made Christmastime 2015. It is a reminder it is OK to be different, even when it is hard and no one knows how to help me. This also ties into something I shared in a previous post years ago.
Copyright © 2017 by Steph. All rights reserved.
Thursday, January 12, 2017
6 Months: More Firsts!
Here it is another new year! Also, at the start of another new semester. Hard to believe I am already 6 months post op from the hip surgery! I have not written, or rather posted, in a while as not sure what to to write or share. I have a few half written posts, that I cannot seem to figure out how to finish right now. Things are going well in some respects, not so well in others. I have so many half written posts from during the diagnostic period (years), but was never sure if I wanted to share until I knew outcomes. Thus, never really mentioned hip issues until after surgery. Once again, I find myself uncertain of exactly what is going on. What I think is happening now, is another collision of the numerous chronic medical conditions. We had figured out a temporary means of managing things, but all knew it was not sustainable long term. We continued this approach long past what was initially ever intended. Once the hip was repaired, we started to slowly withdraw this management approach. I crashed medically in September, we reversed the process, got me stable again, but than started again and things have been slipping ever since. So now what? (That is actually the title of a half finished post in my drafts.) I am not really sure. I had another crazy week before Christmas in which there were lots of medical appointments. These weeks often get overwhelming, and this time was no different. However, I felt like every single appointment went well, every single appointment had good, honest, open conversations about where things are at, potential options, and some new ideas for next steps. I have been told by every single medical provider that I am medically complicated. A lot of the various issues interact with each other and treatments for some interact with treatments for others. It can feel overwhelming trying to manage all, trying to keep everyone on the medical team on the same page. The recent appointments went so much better than I could have hoped! Everyone is on the same page! Rarely have all agreed and worked together so well before. So, what next? Well, more medical work up. Probably more medication trials. Will any of it give new information or help? Maybe, Maybe not. I am both hopeful and apprehensive. My body is notorious for testing negative to everything and responding unpredictably to most medications. More testing in the same direction of previous negative tests....no one is optimistic of really figuring out what the underlying issues are. (I gave up on that years ago. I now have two physicians who have told me if we ever do figure things out, I will end up with a condition named after me.) What we are trying to do is figure out alternate means of managing things.
I had another surgeon recheck of the hip before Christmas and things are doing great from surgical perspective! This is always reassuring to hear. Where are things now with rehab? Still making forward progress. I am walking better and longer! I can walk for half an hour and PT has had me maxed out there for now. Pace is still slower than pre-hip issues. I used to be able to walk 2 miles in 30 minutes (even 4 miles in an hour or less!), but now it has been 1.5 miles in 30 minutes. I wanted to get faster but my body just did not seem ready and although I am a limit pusher, I know better than to push when things are iffy. Still, I was excited to be walking! Well, earlier this week, things felt better and I could tell I was walking faster, but chose not to check pace and let my body do what it wanted and what felt right. Ended up being 2 miles in 33 minutes!!!! Super excited! (I was initially concerned PT may not be as excited since that was pushing limits, especially since the 2-mile walk had been immediately preceded by 2 miles on elliptical to make sure things were warmed up and moving well. But, PT was pleased and said that since this is what I used to be able to do easily, this is what we want me back to doing and right around this point in recovery, too. So, she OK'd keeping this up as tolerated. She did warn me things may feel off the next day or so and that I may not be able to consistently walk like this yet, but if my body wants to, let it.) It is pain-free, no limping, better gait than in years! But, still have some gait issues that we are working on. Swimming is still going well--pretty much pre-op pace. Still not swimming with whip kick, but can go through the motions OK, just not comfortable doing so with the speed and power needed to swim. Shoulder is still hanging in there with swimming, but swimming is also still restricted to protect the shoulder. I did get the shoulder looked at finally. I have sort of known that if it was going to calm down, it would have done so a long time ago, but I am stubborn and did not want to be dealing with more than a few issues at a time, so shoulder had to wait until we had hips calmed down. (I was half hoping it would calm down as well once hips calmed down.) Well, I learned my shoulder has impingement (hips had/have impingement, starting to not like that word and what it means). Injection was mentioned/offered, but since we are working on figuring out alternate management approaches systemically, we opted to wait and see if anything helps. If not, I can come back for an injection later. (And, NO mention of surgery or anything! What I had been afraid of.) Good shoulder is apparently deciding to join the party though. It gave up earlier this week. It did let me swim, but pace was slower to keep it from pinching too badly. PT has already instructed me previously on mechanics to try to protect both shoulders, so I know how to be careful. I also was cleared to try a yoga class this week! It has been a couple of years since I went to a class as I had too many restrictions and preferred to do things at home on my own. It seemed to go well, but true test is the next day or so.
It felt like a few breakthroughs this week, finally! First time this close to pre-op walking pace and duration since surgery! First time back in a yoga class since years before surgery! Grateful for progress as otherwise, it can be easy to get discouraged when dealing with so many things at once and losing progress with many. I have tried to keep this post focused on the positive, yet still sharing some of the reality. I find that I still have to remind myself repeatedly of my motto from early on after surgery. This recovery is not a race to see how fast I can recover but a journey to see how well I can recover. I need to support my body the best I can and let it heal and grow strong at its own pace. I am now about half way through recovery. Seems crazy how long this recovery is, but also crazy how far I have already come. Here is hoping and praying things only get better from here. I am also praying for wisdom for all involved in my medical care as things are precarious and complicated/challenging at present. Regardless of what happens, I know that God is good. He has sustained me this far, He will carry me through.
Copyright © 2017 by Steph. All rights reserved.
I had another surgeon recheck of the hip before Christmas and things are doing great from surgical perspective! This is always reassuring to hear. Where are things now with rehab? Still making forward progress. I am walking better and longer! I can walk for half an hour and PT has had me maxed out there for now. Pace is still slower than pre-hip issues. I used to be able to walk 2 miles in 30 minutes (even 4 miles in an hour or less!), but now it has been 1.5 miles in 30 minutes. I wanted to get faster but my body just did not seem ready and although I am a limit pusher, I know better than to push when things are iffy. Still, I was excited to be walking! Well, earlier this week, things felt better and I could tell I was walking faster, but chose not to check pace and let my body do what it wanted and what felt right. Ended up being 2 miles in 33 minutes!!!! Super excited! (I was initially concerned PT may not be as excited since that was pushing limits, especially since the 2-mile walk had been immediately preceded by 2 miles on elliptical to make sure things were warmed up and moving well. But, PT was pleased and said that since this is what I used to be able to do easily, this is what we want me back to doing and right around this point in recovery, too. So, she OK'd keeping this up as tolerated. She did warn me things may feel off the next day or so and that I may not be able to consistently walk like this yet, but if my body wants to, let it.) It is pain-free, no limping, better gait than in years! But, still have some gait issues that we are working on. Swimming is still going well--pretty much pre-op pace. Still not swimming with whip kick, but can go through the motions OK, just not comfortable doing so with the speed and power needed to swim. Shoulder is still hanging in there with swimming, but swimming is also still restricted to protect the shoulder. I did get the shoulder looked at finally. I have sort of known that if it was going to calm down, it would have done so a long time ago, but I am stubborn and did not want to be dealing with more than a few issues at a time, so shoulder had to wait until we had hips calmed down. (I was half hoping it would calm down as well once hips calmed down.) Well, I learned my shoulder has impingement (hips had/have impingement, starting to not like that word and what it means). Injection was mentioned/offered, but since we are working on figuring out alternate management approaches systemically, we opted to wait and see if anything helps. If not, I can come back for an injection later. (And, NO mention of surgery or anything! What I had been afraid of.) Good shoulder is apparently deciding to join the party though. It gave up earlier this week. It did let me swim, but pace was slower to keep it from pinching too badly. PT has already instructed me previously on mechanics to try to protect both shoulders, so I know how to be careful. I also was cleared to try a yoga class this week! It has been a couple of years since I went to a class as I had too many restrictions and preferred to do things at home on my own. It seemed to go well, but true test is the next day or so.
It felt like a few breakthroughs this week, finally! First time this close to pre-op walking pace and duration since surgery! First time back in a yoga class since years before surgery! Grateful for progress as otherwise, it can be easy to get discouraged when dealing with so many things at once and losing progress with many. I have tried to keep this post focused on the positive, yet still sharing some of the reality. I find that I still have to remind myself repeatedly of my motto from early on after surgery. This recovery is not a race to see how fast I can recover but a journey to see how well I can recover. I need to support my body the best I can and let it heal and grow strong at its own pace. I am now about half way through recovery. Seems crazy how long this recovery is, but also crazy how far I have already come. Here is hoping and praying things only get better from here. I am also praying for wisdom for all involved in my medical care as things are precarious and complicated/challenging at present. Regardless of what happens, I know that God is good. He has sustained me this far, He will carry me through.
Copyright © 2017 by Steph. All rights reserved.
Sunday, December 4, 2016
Five Months
A few days ago marked both five months post op from the hip surgery and also one year post op from the last pelvic surgery. I no longer have any idea how many weeks post op from the hip surgery I am--lost track of that quite some time ago. I am still so grateful with how well both of these surgeries went and how recovery went for the one a year ago and how well the hip recovery is still going thus far! I had such hard recoveries with prior surgeries that these have been a pleasant surprise in comparison. The hip surgery is a really long recovery and it is taxing my patience at times, but that is not even the recovery itself so much as the side challenges that keep coming up.
Things have been sort of up and down lately. The injection for the non op hip is fully in effect and that hip feels normal--no pain and it will finally handle exercises! At three months post op I had been told my op hip was now the good hip. However, once we finally got the non op hip calmed down with the injection, now the hips sort of seem to be taking turns with which one is best. The non op hip has fewer issues over all than the op hip, but the non op hip is still weaker than the op hip. It is amazing how fast strength is lost. There are also times that both hips feel "normal" (whatever that is), and I totally forget I even have hip issues!
I had been told to take a break from walking three months ago or so after the non op hip was being so recalcitrant and we could not get it to calm down no matter what we tried. I was then cleared to try walking again once the injection was taking effect, but then got hit with the adverse reaction to a new medication and that knocked things back another couple of weeks with rehab. This week I finally got to try walking for exercise again! I was told to start with only five minutes and if that went OK to increase to ten minutes. I did 1/4 mile on the track to start--it was actually almost 7 minutes, but went fine, tried again a couple of days later and down to 5.5 minutes so tried longer distance a couple of days later and managed 10.5 minutes and an entire half mile! And, neither hip hurt at all! First time since long before surgery! It is nowhere the pace or duration I could do prior to hip issues, but I am so grateful to finally get to try walking again other than just what was essential to get from place to place. Definitely progress!
Things have been slipping and more discouraging again on other fronts. I am choosing to focus and be grateful for what is going well and not worry about the rest.
Copied from what I wrote a few days ago:
Copyright © 2016 by Steph. All rights reserved.
Things have been sort of up and down lately. The injection for the non op hip is fully in effect and that hip feels normal--no pain and it will finally handle exercises! At three months post op I had been told my op hip was now the good hip. However, once we finally got the non op hip calmed down with the injection, now the hips sort of seem to be taking turns with which one is best. The non op hip has fewer issues over all than the op hip, but the non op hip is still weaker than the op hip. It is amazing how fast strength is lost. There are also times that both hips feel "normal" (whatever that is), and I totally forget I even have hip issues!
I had been told to take a break from walking three months ago or so after the non op hip was being so recalcitrant and we could not get it to calm down no matter what we tried. I was then cleared to try walking again once the injection was taking effect, but then got hit with the adverse reaction to a new medication and that knocked things back another couple of weeks with rehab. This week I finally got to try walking for exercise again! I was told to start with only five minutes and if that went OK to increase to ten minutes. I did 1/4 mile on the track to start--it was actually almost 7 minutes, but went fine, tried again a couple of days later and down to 5.5 minutes so tried longer distance a couple of days later and managed 10.5 minutes and an entire half mile! And, neither hip hurt at all! First time since long before surgery! It is nowhere the pace or duration I could do prior to hip issues, but I am so grateful to finally get to try walking again other than just what was essential to get from place to place. Definitely progress!
Things have been slipping and more discouraging again on other fronts. I am choosing to focus and be grateful for what is going well and not worry about the rest.
Copied from what I wrote a few days ago:
The hip surgery is a long, long recovery. It is going well overall, but it can be hard to be patient. I keep reminding myself that this is not a race to see how fast I can recover but a journey to see how well I can recover. This reminds me of my walk with the Lord, as well. He is molding me more into His image in His way and His time. I need to be patient and not try to rush the process. If the process includes pain and illness, then I need to view these as His gift to me and be grateful for them. His grace is more than sufficient.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18
Friday, November 25, 2016
Festive Sweet Potatoes
This is one of my favorite holiday recipes. I think cranberries make things look festive. I managed to lose the original recipe and had modified it anyway, so just go by memory, thus it is probably a little different each time I make it. Below is what I did this time.
~4 lb sweet potatoes (I think this was closer to 4.5 lb)
Sweet Potato Casserole
~4 lb sweet potatoes (I think this was closer to 4.5 lb)
1 red apple (I think I used Fuji because that was what I had)
1 12-oz pkg cranberries
1/4 c honey
cinnamon
-Scrub, cut up, boil sweet potatoes until tender. Drain, peel, cut into desired size, layer in 9x13" pan (this step can be done in advance and the sweet potatoes stored in fridge until ready to finish/bake).
-Rinse and drain cranberries. Boil cranberries and honey until the sauce is desired consistency (~10-15 minutes? berries will pop and soften)
-Thinly slice apple over sweet potatoes
-Pour cranberries over top of apple/sweet potatoes
-Sprinkle cinnamon over top of cranberries (I don't ever measure this, just sprinkle liberally)
-Bake @ 350 until hot through and apple is tender (~45 minutes)
Please note that infants less than one year of age should not have honey.
Please note that infants less than one year of age should not have honey.
Enjoy!
Update Thanksgiving 2018
These are very good using pure maple syrup in place of the honey and dotting the top with butter before baking. They are also very good served with chopped pecans.
Update Thanksgiving 2018
These are very good using pure maple syrup in place of the honey and dotting the top with butter before baking. They are also very good served with chopped pecans.
Update Thanksgiving 2021
These are very good using a 12-ounce can of undiluted apple juice concentrate in the cranberry sauce in place of the honey. I also sprinkled the cinnamon on top of the apples and then topped everything with the cranberry sauce.
Notes
This can be made with frozen cranberries. The sauce will take a little longer.
Cinnamon, nutmeg, cloves, allspice, and/or ginger can be added to the cranberry sauce.
The cranberry sauce is also very good on pumpkin pancakes.
Sweet potatoes ready for the oven.
Copyright © 2016 by Steph. All rights reserved.
Sunday, November 20, 2016
Life is Rarely Boring
This past week has been difficult, but not from anything related to surgery. I had gone into the weekend with far worse pain than usual from what I was suspecting to be a reaction to the new medication. However, Monday, the prescribing physician was surprised at the reaction and did not think it cause and effect, thus asked me to give it another try. Second try also resulted in dramatic exacerbation of the pain. Thus, the medication was stopped. It took the majority of the week for all of the effects to clear.
The medication reaction set things back with PT and rehab as pain was so high it was hard to want to move very much. PT checked and my hips and body were still able to move and respond well and not acting like a normal flare (she has seen me through several so knows what is normal for me), so she also really thought it was a reaction to the new medication and not an actual flare. She did back me off exercises as she could tell I was not doing well. By later in the week when the reaction was finally mostly resolved, she increased things back up.
I had been so excited about finally making progress again last week after the injection only to end up with another week long set back from a medication reaction. Sigh. Sometimes, I feel as if no matter what I or those supporting me do, I cannot win. Anyway, I am grateful that the reaction effects have cleared and I am back to "normal" baseline pain levels again. I never thought I would say I was this grateful for the usual pain. I am also grateful that the non op hip is finally cooperating! It is handling strengthening exercises, handling more weight bearing, handling sitting, standing, etc. Finally! It is still weaker than op hip, but we are at least able to work on strengthening it.
I am currently looking forward to a bit of a break. Life in general has been rather more "interesting" than I prefer. I am ready for quiet and rest.
Matthew 11:28
Come to Me, all you who labor and are heavy laden, and I will give you rest.
Copyright © 2016 by Steph. All rights reserved.
The medication reaction set things back with PT and rehab as pain was so high it was hard to want to move very much. PT checked and my hips and body were still able to move and respond well and not acting like a normal flare (she has seen me through several so knows what is normal for me), so she also really thought it was a reaction to the new medication and not an actual flare. She did back me off exercises as she could tell I was not doing well. By later in the week when the reaction was finally mostly resolved, she increased things back up.
I had been so excited about finally making progress again last week after the injection only to end up with another week long set back from a medication reaction. Sigh. Sometimes, I feel as if no matter what I or those supporting me do, I cannot win. Anyway, I am grateful that the reaction effects have cleared and I am back to "normal" baseline pain levels again. I never thought I would say I was this grateful for the usual pain. I am also grateful that the non op hip is finally cooperating! It is handling strengthening exercises, handling more weight bearing, handling sitting, standing, etc. Finally! It is still weaker than op hip, but we are at least able to work on strengthening it.
I am currently looking forward to a bit of a break. Life in general has been rather more "interesting" than I prefer. I am ready for quiet and rest.
Matthew 11:28
Come to Me, all you who labor and are heavy laden, and I will give you rest.
Copyright © 2016 by Steph. All rights reserved.
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