Tuesday, March 20, 2018

Wednesday, March 14, 2018

Hip Preservation Surgery

What is hip preservation surgery?  It is surgery that preserves the joint. Not a joint replacement, rather repair of the issues within the joint. In my case, this involved shaving bone to correct bony impingement, repairing the labrum, etc. It is fascinating to me what all can be fixed via only a couple of small portals. My repairs included anchoring the labrum back in place, shaving excess bone from femoral acetabular impingement (FAI), decompressing the anterior inferior iliac spine (AIIS) for subspine impingement, cleaning up a torn ligament, tightening the capsule, etc. Hip arthroscopy is technically a minimally invasive, outpatient procedure. But, it is still a major surgery.

I was both overprepared and underprepared for this surgery.  Having had prior surgeries, I knew the basics of what to expect in some ways, but this was beyond anything I'd had before. I had never been on crutches or used a walker before, etc. These were a huge learning experience. But, overall, I was pleasantly surprised with how much easier it was than I expected! Preparation and rehabilitation each deserve their own separate post.

Some things that have surprised me a bit with any surgery, but especially orthopedic surgery, is no mention whatsoever of how to support healing with nutrition, relaxation, etc. I am never certain if the reason nutrition is not mentioned with me is because it is typically not addressed, or if it is because most of my physicians and other providers know my background is in nutrition. Regardless, I notice it does not get brought up. The approach I take with myself is to make sure I am supporting my body for recovery the final weeks/month before surgery and the initial few months after surgery. This means no weight loss, greater emphasis than usual on protein, strict avoidance of sugar. There are other approaches I take as well. I recently found this link which has great information regarding pre- and post-op nutrition. Most of these are things I have done. Plus, I do some additional strategies as well. I had started moderately high dose vitamin C prior to a surgery a couple of years ago when fighting a respiratory infection, trying to support my immune system in order to be well in time of surgery. Then, knowing that vitamin C is an essential co-factor for collagen synthesis and that collagen is needed for wound healing, stayed on the vitamin C after surgery to help support healing. Further, without any evidence, chose to remain on vitamin C knowing I had a torn hip labrum. I had no expectations of the labrum healing, but figured the vitamin C would not hurt. Then, went into hip surgery--so just kept on taking vitamin C. Interestingly, when I was diagnosed with Ehlers-Danlos syndrome (genetic connective tissue disorder due to defects in collagen), high dose vitamin C was one of the recommendations! Thus, I have gradually increased dose some over time.

Preparing for surgery. This topic deserves its own post, so this will be a brief overview, not comprehensive. Preparation included "prehabilitation" in physical therapy. This helped me go into surgery as strong as possible, which in turn, aided with rehabilitation post-op. With hip arthroscopy, the goals of "prehab" included hip and glute strengthening, core strengthening, also upper body strengthening in preparation for being on crutches. I made sure I had work and school tasks caught up and to good stopping places prior to surgery. I made meals in advance to make things easier after surgery. I made sure regular prescriptions were current, refilled. I arranged to have a family member able to drive me to/from surgery, stay with me the first days after surgery. Friends pitched in to help with rides until I could drive.

Although I said, and still say, recovery was much easier than anticipated, it was certainly not easy. I like to be up and doing things. My body needs to keep moving. Patience is not one of my virtues....just something I have been given numerous opportunities to practice. I strongly dislike restrictions and limitations. However, I understand their purpose and am capable of dutifully following them.

I mentioned in my post regarding hip impingement, and diagnostic process that I was eventually sent out of state for another opinion, and this second surgeon is who recommended surgery. Thus, I traveled for surgery. However, he and his office made it as easy as possible for my family and me. I had an early morning surgery time, so my sister and I drove there the evening before, stayed overnight in a hotel, checked into the surgery center bright and early the next morning. I was discharged same day back to the hotel. My surgeon did request I stay in town overnight, start physical therapy the next morning there before traveling home, but fine to travel after PT.

Surgery. Part of the pre-op process included a very brief tutorial session with crutches since I'd never used them before. I was also given the recommendation not to try using crutches on the stairs once home--rather, sit down and scoot up the stairs. I saw my surgeon before surgery--was able to ask final questions. My burning, final question was how soon I could be in the pool after surgery. (I use being in water as part of total pain management, and past surgeries had disrupted things and made recovery even rockier. So, this was important to me from global management perspective.) Initial response was ~3 weeks, as that gave time to make sure incisions were closed once sutures were removed. Since I wanted to be able to be in water as soon as possible, had experience with being in early, ways to protect incisions, injection sites, etc., I asked if possible to be in sooner if I used Tegaderm or other waterproof bandages. This was conceded to be acceptable. Yay! (But, I also think this is why I was warned against pushing limits later by my surgeon. That question showed my true colors of being a definite limit pusher--something my local physical therapist was already very aware of.)

The surgery itself is the easy part--I slept through it. It helped having a surgeon who is excellent at what he does, who inspired confidence and trust.  I trust him fully.  I was curious about the surgery, but simply from wanting to know what was being done, not because I questioned the surgeon in any way.

I was discharged before noon! Wow! Rested at the hotel, had to problem-solve an effective system for icing. We watched a movie, but I did not remember much. A friend stopped by to visit. I know I woke in the night, but do not recall any major sleep challenges--unlike pre-op. Challenges post-op included I could not move surgical side leg, was completely non-weight bearing. It was hard to get situated in bed, it was hard to get out of bed. I needed help with getting the surgical leg situated. Surprises: I was fully independent in the bathroom! Yay for not needing help! However, I needed help getting out of bed in order to get to the bathroom.

The day after surgery, I was not hungry, but knew I needed to eat. I kept it light but protein dense. I had my first post-op physical therapy appointment. Physical therapy went well and was incredibly helpful! I was given tips for crutches--how to walk correctly with partial weight bearing, stairs tips, etc. I was told it was fine to use my good leg to support and move my surgical side leg. I was given exercises, examples of things to do to help fill in any gaps in surgeon's rehab protocol. I was told how to do quad rocking, allowed to see how low I could get--fully into child's pose! Wow! And, no pain at all! PT let us put my ice packs in the freezer during my appointment, then supplied us with fresh ice for the trip! My discharge info had said to stop every hour on the return trip to get up and "walk" around with the crutches. However, PT told my sister if I was asleep, to just keep driving and let me sleep. We did so. But, this meant I woke after we had just passed a good stopping point, with my hip and leg stiff and sore. I was pretty swollen and uncomfortable by the time we got home.

After surgery, I had a big, bulky bandage, so was not sure where exactly incisions were, how many there were, etc. Bandage made it difficult to ice as well. My discharge info had said I could remove the bulky bandage 24 hours post-op, which was about the time of the PT appt. PT said it did not matter if I left it on or took it off before physical therapy. I opted to leave it on as I figured it was more protection over incisions since I was going to be traveling.  I am also glad I waited as bandage removal was sort of a messy process. One incision had seeped quite a bit. Residual adhesive issues that required scrubbing with rubbing alcohol, rubbing with coconut oil, etc.

Once the bandage came off, I discovered two small incisions, one of which had seeped quite a lot. It was recommended to cover the incision/sutures with bandaids to protect them from catching on clothing. My body dislikes adhesives, so I was reacting to my "safe" bandaids that I had previously tolerated. I was even reacting to the sutures themselves by the time they were removed around two weeks post-op by my local primary care physician.

I was allowed to take a shower 2-3 days post-op. I so badly wanted a shower, but was so exhausted on the first day I was cleared, that it ended up not happening. When I did finally get a shower, it was an exhausting process and required a nap afterward. In fact, everything attempted required a nap afterward. Physical therapy appointments were exhausting...and meant napping once home. I think I slept most of the first week. My existence was sleep, PT rehab home exercises, eat, rest/sleep, repeat. Once I was finally more awake late in the first week, I also discovered I was always hungry no matter how much I ate. I knew recovery from surgery required extra energy, but had not thought about how much more work crutches were as well.

I was prescribed NSAID for first weeks after surgery, non-optional as prevention against heterotopic ossification (abnormal bone growth). I was also prescribed antibiotics as a precaution, narcotic painkiller as needed, anti-nausea medication as needed, stool softener as needed. The NSAID and antibiotic were taken as prescribed. The others were all as needed, and never needed at maximal dose. In fact, I am not certain if any of them were truly needed. Out of precaution after rough recoveries from prior surgeries, I started out on narcotic, but quickly realized I had no actual pain. I was uncomfortable at times, but not pain. This was a pleasant surprise! I had such severe pain pre-op, and had been expecting even worse pain post-op, but that simply was not the case. I am notoriously unpredictable in my reactions to medications, so I was relieved that each of the medications my surgeon prescribed for after surgery, were ones we already knew I tolerated and worked well for me. Thus, no risk of reactions during post-op recovery.

These are a select few resources that I found very helpful pre-op, when learning about surgery itself. My physical therapist and surgeon also received their share of my questions. I am one of those patients who likes to know what to expect as much as possible. However, I also realize that some things are not knowable and I can be alright with that. My physical therapist gave me an idea of what post-op rehab would look like. My surgeon warned me I'd probably rehab slowly. However, I did not know actual restrictions, orders, specific protocol until after surgery. Everything worked out fine.

For reference.
Nutrition info (yes, same link as above because I think it that important!)
Pre- and post-op nutrition (Midwest Orthopedic Specialty Hospital)

Description of surgery (Bart Eastwood, DO).
Part 1 (Overview)
Part 2 (Periprocedure)
Part 3 (Technique)
Part 4 (Medication)

Video of surgery (Viewer discretion warning as this is surgical video, not scope view only. I am not remotely squeamish and I am incredibly curious. I had no issues watching, rather found it fascinating! However, I am aware others may have issues watching.)
Hip arthroscopy video (JW Thomas Byrd, MD)

Copyright © 2018 by Chronic Wholeness. All rights reserved.

Homemade Energy Bars Recipe

When dealing with chronic illness, I need to make every bite count. This recipe is one I made up based off of various ideas. It is nutrient dense, lends itself to being modified as needed for taste or allergy/dietary needs. It is a sort of cross between granola bars and energy bites. I have a basic recipe, but then changed it, then changed it again. Now, I rarely measure anything. Thus, this "recipe" will be given in estimates. I am normally not a fan of supplements, but rather of getting needed nutrients from food as much as possible.  However, dealing with weight loss, adding fat to everything was not helping enough, so resorting to protein powder at present in addition to the extra fat. Preparing for travel, so made these to take along for snacks.


Homemade Energy Bars Recipe

2-3 cups rolled oats
2 cups trail mix
1/2-1 cup protein powder (optional)
cinnamon
ground ginger
1 1/2 cups peanut butter
1/4 cup blackstrap molasses
1/4 cup coconut oil

Mix oats, trail mix, protein powder in a large bowl. Stir together peanut butter, molasses, coconut oil in a smaller bowl or large measuring cup. (Melt coconut oil if needed.) Pour peanut butter mixture over oats mixture. Stir until fully mixed. Pour into greased 8"x8" pan and press down firmly and evenly. Chill until firm. Cut into desired size bars. Store in fridge. (Coconut oil gets soft....)

Alternatively, these can be rolled into balls. I have done this, but it is time-consuming, and I tend to look for fastest, easiest ways to do things.

Any nut or seed butter can be used in place of peanut butter. Honey can be used in place of molasses. I am sure pure maple syrup could be as well. Any store-bought or homemade trail mix can be used--I usually use homemade trail mix. Or, in place of trail mix, any combination of nuts, seeds, dried fruit can be used.  Other optional items: sunflower seeds, ground flax seeds, chia seeds, unsweetened coconut, cinnamon, etc. I usually use honey, not molasses, but molasses actually contains more nutrients, it sounded good, so tried it and it turned out well. The molasses led me to deciding to add cinnamon and ginger as well--excellent combination! These were not measured, but liberally sprinkled/poured.

I normally do not use protein powder--this is first time other than for after orthopedic surgeries. I did not measure this--I looked at how much was left in the container, decided it looked reasonable so dumped the entire amount in. This time I used pasteurized egg white protein powder (only ingredient) for the protein powder. I usually use Tera's Whey unsweetened whey protein powder (two ingredients: whey concentrate, sunflower lecithin). I prefer unflavored as I have more options for how to use it. I need as few ingredients as possible--less chance of reactions.  I also like unsweetened as I do not do well with sugar, but also do not do well with most sweeteners. I can get away with some honey, molasses, pure maple syrup, even some sugar once in a great while if symptoms are stable. Artificial sweeteners, stevia, sugar alcohols are all off limits--this is just me and how my body reacts at this time. There are other protein powders out there, I am sure others that would work well for those with sensitivities as well, but these are the only ones I have used thus far that have worked for me.


All mixed together.

Mixture pressed into pain, chilled, ready to be cut into squares.

One granola bar.


 Homemade Trail Mix

1 cup almonds
1 cup walnuts
1 cup pecans
1 cup Brazil nuts
1 cup hazel nuts
1 cup cashews
1 cup peanuts
1 cup raisins
1 cup dried apricots (cut into smaller pieces)
1 cup dried cranberries

Mix together. I usually measure all into a large ziploc and shake it, or use a large mixing bowl. I cut up the apricots with scissors. Any combination of nuts, dried fruit, seeds will work.

I like seeds in trail mix, but they tend to sift to the bottom. Thus, I rarely add them to trail mix.

I also like chocolate chips in trail mix, but need to be careful with sugar, plus chocolate means melting issues if traveling with trail mix.

These both make great, easy to make, easy to modify snacks.

Copyright © 2018 by Chronic Wholeness. All rights reserved.

Monday, March 12, 2018

Easy Slow Cooker Vegetable Beef Soup Recipe

One of my many hobbies is playing with recipes to find things that are easy to make, take as little effort as possible, are healthy, inexpensive, etc. I have sensitivities, chronic pain, chronic fatigue, etc. I have to be careful of what I eat, I do not have the stamina to stand or sit long enough to do much food preparation or cooking. I also do not have much to work with in terms of budget. So, it was more or less necessity that drives this hobby. But, it is something I enjoy doing.

I learned to cook by strictly following recipes. However, the more experience I had, the more I learned about food science, nutrition, etc., the more I have become creative with recipes, or simply make things up completely as I go.

From a chronic illness perspective, my slow cooker is the best thing ever! In five minutes or so, I can dump in ingredients, then the slow cooker does the rest of the work for me!


I sometimes put the meat raw into the slow cooker with some of the juice and let the meat cook, then add the rest of the ingredients.  I sometimes brown the meat after starting the vegetables with the juice and seasonings. Ground turkey works well in place of beef. There really is no right or wrong way. The celery seed can be replaced with celery salt. Honestly, all of the seasonings are optional, this is just one of my "all-purpose" combinations. Soups are easy to modify.

I grew up as a really picky eater and still have some texture issues. I am not a fan of frozen vegetables in general, but the slow cooker can get them really tender and to the point my mouth will consider them acceptable.

Copyright © 2018 by Chronic Wholeness. All rights reserved.

Saturday, March 10, 2018

Appearances

What does appearance mean to you? How important is it?

I am a novice blogger, new to Twitter, new to Pinterest, still debating Instagram. However, I am familiar with Facebook, though still learning some of its capabilities, and at least know the basics of Blogger. What has struck me over the few weeks of observing, trying things out, is with the new year in particular, the emphasis on appearance, weight loss, getting fit. However, the message seems to be from looks or appearance perspective.  It is not from an overall health and wellness perspective.  This annoys me.  Why? Multiple reasons. One, I am fighting to live life as fully as able, I use physical activity and nutrition not for appearance sake but for survival. Two, I have training in clinical nutrition, clinical research. Media-inspired appearance goals are not helpful; on the contrary, tend to contribute to body image or eating disorder issues.

I have not done it yet, but contemplated collecting the numerous photos I have seen telling of how to get the best abs, or toned body, or lose weight, etc. Then, put all of the photos together into a collage leaving the various empty claims associated with them. Why? Because, it is all marketing based on a society that wants to have the "perfect" or "ideal" appearance, weight, etc. I do not care if it is exercises, diets, programs, etc. All of it is marketing.  It leads to dissatisfaction with one's current state.

Why is all of this irritating to me? Again, multiple reasons.  I have seen people struggle with eating disorders, body image issues. People trying to find the perfect diet that will help them get their ideal body.  Or, find the perfect exercise routine that will get them in the shape/condition they want.  People focusing on appearance, when there are people struggling to figure out how to optimize functional ability to just get through life as normally as possible. I have also seen people striving to find the "perfect" diet, or fitness plan that will manage chronic illness. I am not yet convinced there is such a thing, or if there is, what it looks like for one person will be different than for another person.

I have maybe, just maybe, made some comments here and there in some of the groups I am in that are more weight-focused.  They claim to be health-focused, but they are weight-focused. Someone posted something about being incredibly frustrated with weight and thought that if she could just get weight lower life would be better  That of course encouraged replies in a similar vein.  I typically ignore such, scroll past, don't waste my time.  But, I was in the middle of working on a blog post for a different blog on what is truly important and how perspective influences things. So, I thoughtfully commented with the intent of offering another perspective, without judging. Since the focus was appearance, I replied in kind--something to the effect that I am at "ideal" weight, have what some may consider a "perfect body" but that I would gladly regain the 60 pounds I lost decades ago if it meant having more ability, less illness. I have learned to accept illness. This is part of my life at this stage, so not really discontented, so much as frustrated that someone would be expressing discontent over something so shallow as weight from appearance standpoint when there are people fighting to live. Many thanked me for my comment, said it helped them refocus. I am in no way saying weight does not matter. I am simply raising the perspective that it is one small piece of overall health, not the major focus, and the focus needs to be on health more than appearance.

Back to the picture collage....I more or less have the body of an athlete in spite of the fact I cannot run, I am just learning to walk again, I have numerous illnesses, multiple limitations. Do I use any of the gimmicks being marketed? No, none. I do not follow any diet, any particular exercise type. Rather, I use nutrition thoughtfully to support my body--emphasizing whole foods, protein, veggies, etc. I use a combination of types of exercise including home exercises from physical therapy for multiple issues over the years, some Pilates, walk as able, swim as able, elliptical, bike, pool exercises depending on ability level. I am strong, lean, have been mistaken for a gymnast before when at the pool....I was barely off crutches at the time, could not walk much at all. No, not a gymnast. Just a very determined person who refuses to consider herself disabled in any way. I may have some challenges with functional ability, but I am very capable of adapting and finding ways to work around most issues. I am striving to support my body the best I can with nutrition and physical activity, not for appearance, but for ability to live as fully as possible in spite of challenges.

Copyright © 2018 by Chronic Wholeness. All rights reserved.

Tuesday, March 6, 2018

Test Subject

I had more medical testing recently.  This is more or less normal for me...and results tend to be normal as well, even though clearly I am not normal. Current guess is this test will be normal as well. What was this test? Esophageal manometry, or motility study.  Do you know how not fun it is to have a tube placed up your nose, down your throat, into your stomach? Nose was numbed prior, nothing else was as they needed me able to swallow still.  I have an over-reactive gag reflex.  Maybe the real reason for minimum of 6 hours NPO (nothing by mouth: complete fasting--no food, nothing to drink) before this test is to prevent patients vomiting during tube placement???  Do you know how much this nutrition professional dislikes fasting?  I slept most of the time prior to having to leave for the test to avoid being awake any longer than necessary when hungry, thirsty, caffeine deprived. I had another upper GI endoscopy this afternoon and had planned to sleep until time to go, but my body woke too soon. So, was awake, hungry, tired, thirsty, etc. (So, for those seeing dietitians/nutritionists, please remember we are real people and do not like fasting or diets or changing eating patterns any more than anyone else does. Or, at least I don't.) Anyway, so far, things looked normal on this scope, which is an improvement from last scope, but still leaves unanswered questions. And, a recommendation to see another specialist. This again, is not an unusual outcome.

What tests have I had?
Laboratory
-Blood work, lots and lots of blood work
Imaging
-CT scans, with and without contrast (numerous)
-MRIs, with and without IV contrast, or arthrogram--contrast injected into a joint (numerous)
-X-rays (numerous)
-DEXA bone density testing (multiple)
Gastroenterology
-Colonscopy (multiple, I am nowhere near screening age yet....)
-EGD (multiple)
-Esophageal manometry/motility test
-Gastric emptying test
Cardiology
-EKG (so many times, no idea how many?)
-Echocardiogram (multiple)
-24-hour Holter monitor
-4-week event monitor (reacted to electrodes, had open sores, scarred, they had pity on me, ended the test a week early)
Neurology
-EMG testing (miltiple, mostly normal, one diagnosed radicluopathy--by a neurologist who had told me directly that all of my symptoms were due to anxiety, repeated the positive portions of the test multiple times because he thought I was faking it--I did not know enough about the test to have any idea how to fake it or that it could be faked. He begrudgingly diagnosed me with radicluopathy.)
-Nerve conduction studies (multiple, mostly normal)
Miscellaneous
-Salt chloride test for cystic fibrosis
-Muscly biopsy for muscle disorders
-Autonomic testing
Numerous other tests, some highly specialized.

I have also participated in research studies...more testing.

It is a relief to find out test results are normal, as that means no additional issues to have to deal with. However, it can also be a relief to have abnormal results, as that at least provides direction for additional approaches to managing things. Additionally, as odd as this may sound, it is somewhat validating when a test comes back abnormal--it confirms that my body was not making things up, or exaggerating symptoms. What I experience is real, even when tests come back normal. Tests are fallible, do not provide definitive answers. They are only one part of diagnosing issues. There is a saying, "Treat the patient, not the labs," that I find especially important with the more medically complex situations. I would extend the concept further to treat the patient and not the condition, as well. Not all patients manifest the same even with the same medical condition(s).


Copyright © 2018 by Chronic Wholeness. All rights reserved.

An Introduction to Chronic Wholeness

I will be writing about chronic illness in the context of wholeness or wellness.  I chose this to be my theme or purpose:  pursuing wholenes...