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.

Five Months

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

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

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

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

Copied from what I wrote a few days ago:

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

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18

Copyright © 2016 by Steph. All rights reserved.

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.

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. 

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 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.

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.

Progress Again Finally

It has been an interesting week and I wrote thoughts as the week progressed. Far more occurred than I am sharing here, but these are the major happenings. I am so grateful for progress and I am choosing to focus on the progress and not the unexpected challenges. I feel like this week is less of surgery progress report as a collision between the multiple other chronic medical conditions.

11/7/16

After another challenging week, another weekend of being in recovery mode, I received a call this morning asking if I could come in yet this afternoon for the injection?  Yes! Oh my, that was fast once they called!  I already felt better as I left and had an amazing rest of the afternoon actually being able to walk and sit pain-free or minimal pain in both hips!  So relieved!  It took over two months to finally get the injection, but it is definitely working! With the anesthetic part of the injection in effect, I find I am actually starting to do things more normally and more balanced again--less shifting of weight onto the op side hip to give the painful non-op hip a break.  It is still habit to shift onto op side, though as it has been so long from compensating. Funny how fast new compensation patterns develop.  I used to always stand with weight shifted onto right hip before surgery--hence it always getting irritated every time left hip flared before surgery.  I had been told, and learned how, to force myself to evenly distribute weight in spite of pain before surgery.  But after surgery, as left hip got stronger and right failed to calm down as we tapered prednisone, I gradually shifted to using left side more and protecting right side.

I am far more hopeful again, but honestly also a little apprehensive as the true test starts--tapering the oral prednisone the rest of the way.  The past tapers have flared all pain, but especially hips and shoulder. I am hoping things do not get too bad and that the shoulder will stay pretty stable. The left hips was tolerating the taper fine for the first time ever when we began tapering in August six weeks after surgery.  But, that is when the right hip and the left shoulder flared back up again and have not calmed since except for the high-dose prednisone burst several weeks ago.

It has been a rough evening after the anesthetic wore off, but by this time, I have had so many injections, I know normal response and knew it was going to be even more painful once the first part wore off than prior to the injection.  Hoping the cortisone takes effects as well and quickly this time as it has in the past.  But, hoping it lasts longer this time.

Probably worth noting, but trying not to think about what this may mean: the anesthetic worked 100%, as in completely pain-free.  As it wore off and pain returned, I only felt pain in all of the normal areas, with exception of muscle soreness. Things were reminiscent of injections in the other hip prior to surgery.  I am intentionally choosing not to think too hard about any of this or try to sort out what it might mean. I honestly do not want to know.  Normally, I am curious, inquisitive, wanting to know and understand everything I encounter.  Normally, I think of knowledge as being power.  But, sometimes ignorance truly is bliss.

11/10/16

By later in the week, I noticed definite times of no pain in the injected hip, suggesting the cortisone is starting to take effect!  This afternoon PT checked motion on both hips and said both were moving well and with full normal motion!  So exciting and encouraging!  She was really pleased!  I was pleased that someone other than myself could tell--that I was not imagining things out of too high of hope. We are again working on slowly adding strengthening exercises for the right hip and it is amazing how weak it got when we were trying to get it calmed down.

Now that I was finally able to get the injection, we are again tapering the oral prednisone.  So, that means now the other problematic joint (shoulder) that we had actually tried to check about getting injected a couple of months ago but not able to, is now flaring up.  But, since the right hip is finally calming down and both hips are doing well, there is more time to work on the irritated shoulder.  It could be frustrating, but I am grateful that at least things are sort of taking turns now, rather than hitting me all at once. The shoulder is limiting but less so than the hip has been, so this is still improvement compared to early in the week.

I also allowed myself to be persuaded into trying a new medication to try to help support my body as we taper the prednisone.  I am notoriously unpredictable in my responses to medications, so I am being as optimistic as possible and asked how to improve the chances that my body tolerates this medication and it actually does what it is supposed to do.  So far, not really noticing anything at all.  Pain in general is worsening, but suspecting prednisone taper for that and not concerned.

Still so relieved and excited. Finally!  Progress!  It has been a difficult couple of months of fighting, almost giving up so many times--including earlier this week.

11/12/16

I was so encouraged with finally making progress, finally getting pain under better control!  But then almost ended up in the emergency room last night. The best guess at present is severe exacerbation of pain as a side effect to the new medication that was started a few days ago in an attempt to support me during the prednisone taper as tapers have historically not gone well for me.  Well, this medication certainly did not help and maybe made things worse.  Pain spiked far faster and higher than with normal flares and compared to past prednisone tapers as well. This is certainly not normal for me. I went from pretty functional Friday afternoon to barely able to finish getting groceries, leaning on the shopping cart for support, barely getting things up the stairs to my apartment (left all non perishable items in the car to carry up another time), then lying on the floor with ice packs the rest of the evening unable to sit or stand longer than a few moments at a time.  I had intended to go to another couple of stores and start laundry but those ideas were completely abandoned due to pain levels and inability to stand or walk very far.   Discouraged as this means yet another weekend spent in recovery mode after all. I am very grateful that I was able to go to a family function that I had been looking forward to, but I had to take it easy.  This set back has been discouraging and last night in particular was difficult.  It is getting easier to want to quit fighting and just give up.  I am still hanging on but not sure how long.  This evening is better than this morning, which was better than last night.  So, slight hope is returning, but much more cautiously optimistic at present than the past few days before this situation happened.  I am at the moment completely back off the break through pain medication and being careful, but trying to see if I can stay off of it if things are calming back down.  The new medication has been stopped and it should be fully clearing my system relatively soon as I had not been on it that long. (There were multiple discussions with medical resources last night and this morning, but more will have to be discussed and decided Monday.)

11/13/16

Seemingly making progress again.  Things are still challenging, but grateful for any progress again at this point,  Praying for wisdom for my doctors tomorrow when they see the notes of what happened over the weekend. Praying for acceptance for me of whatever new plan is suggested.

1 Thessalonians 5:16-18
Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you.

Copyright © 2016 by Steph. All rights reserved.

Mexican Casserole Recipe

This is a super easy crock pot recipe, as are most of my recipes.  This one was made up sort of on accident, again like most of my recipes are.  This actually started out with the intention of making chili, but part way through I changed my mind and started just adding things that sounded good.  It turned out really well.  I was planning to make chili again today, but once I got it started, began to think of changing it into this recipe...which is exactly what ended up happening.  This is modified from the chili recipe I posted a few years ago.

Easy Crock Pot Mexican Casserole

1 cup pinto beans
1 cup black beans
1 cup red beans
2 tablespoons chili powder
1 tablespoon cumin
1 teaspoon garlic powder
2 teaspoons onion powder
2 teaspoons celery seed
1-2 pounds ground beef or turkey
1 cup brown rice
1 10-ounce package frozen, chopped spinach
~1 ½ teaspoons salt (to taste)
1 can tomato paste
V8 (a few cups, I just poured)

Sort and rinse beans, cover with several inches of water and let soak overnight.  In the morning, drain the beans, pour beans into crock pot and cover with plenty of fresh water.  Add all seasonings except salt. Cook on high.  If using at least 90% lean ground beef or turkey, I crumble it in raw and let it cook with the beans.  If not, then I brown and drain the meat before adding it.  The spinach may be added frozen, and it will thaw and cook. I usually add the spinach and rice once the beans are mostly tender.  Once beans and rice are both tender, I add the tomato paste, V8, and salt. I usually turn the crock pot to low at this point, but it does not really matter. The V8 I add until it reaches the consistency I want. I did add additional onion powder, garlic powder, and chili powder but did not measure any of them.  This works best in a large crock pot. This does freeze and thaw well.

You can use any mix of dry beans, but I usually use the ones listed.  The meat is optional, the spinach is optional. Even the rice is optional, but I like the combination of all of them.

Copyright © 2016 by Steph. All rights reserved.

Patience, Perspective, and Persistence

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

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

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

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

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

2 Corinthians 12:9-10

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

Copyright © 2016 by Steph. All rights reserved.