Homemade Christmas

Written 12/18/2021, edited and posted 12/18/2022.

I enjoy Christmastime with the memories, traditions, baking, family get-togethers, and time to refocus. I have usually done quite a bit of baking by this time but this year I have not yet started. 

I am in the process once again of moving, but this time locally, not long distance. The process has been pretty drawn out. Between no actual deadline, long work hours, multiple medical appointments, and needed rest time, I simply have not been able to get things done as quickly as hoped. The boxes from my last move are largely still packed and stacked in various locations. This actually has made it more challenging to try to get furniture accessible to move. I have moved some boxes and some smaller furniture, but still have larger items to move and a lot more boxes.  I have had fun with setting up my new place and moving in the things from my old place that have been in storage for years. 

I knew I eventually would want my own Christmas decorations but had planned to wait and shop after-Christmas-sales. However, Black Friday sales had amazing deals and my dad decided not to have a tree or anything. It didn't seem right to have nothing. So...I got a small artificial tree! I have always been used to real trees and this tree is easier as no need to remember to water it. Because my dad did not get a tree, everyone came over to my place to put lights on my tree! I had not made ornaments yet or anything. I have a book of patterns for making thread crochet delicate snowflakes and I have made a couple years ago, but I am not sure where either the book or the snowflakes are at present. I do have my own ornaments somewhere, but not really sure where. I know my decoration preferences are simple, homemade, yet festive, when it comes to holidays. My kitchen accessory theme is gingerbread. It only made sense to continue a gingerbread theme to a tree! I would have loved to make cranberry and popcorn garland, but time did not allow. So I found wooden beads, painted red, that look like cranberries! Perfect garland. I found a pattern to crochet a "popcorn" garland and I bought the yarn, but this might have to wait until next year. I made gingerbread "cookie" (cinnamon salt dough) ornaments and painted them with fabric paint to mimic icing. I made dried orange slice ornaments, hung candy canes, and am planning to make regular white salt dough snowflake ornaments. I think it would be fun to make a cinnamon salt dough "gingerbread" village of houses. The smell of baking cinnamon salt dough and orange slices is amazing! 

 

Ornament "Recipes"

1. Cinnamon Salt Dough
Ingredients:
2 cups flour
1 cup salt
1/2 cup cinnamon
1 cup warm water
Directions: 
Sift together dry ingredients. Add warm water to make a dough. More or less water may be needed. I added most of the water, then all, then got additional. Knead the dough for several minutes to help finish mixing and make the dough smooth. Roll out to approximately 1/4 inch thick, cut with cookie cutters. Poke holes for hanging the ornaments in the top with a drinking straw or use a toothpick to poke and enlarge a hole. Bake at 225 degrees, 2 hours or until dry. The tops will lighten and these can be rubbed with a bit of cooking oil to return them to original color. Cool completely before decorating. I used fabric paint and it worked well. Allow the paint to dry fully. Once dry, I threaded red and white twist twine through the hole in each ornament for hanging. I initially planned to paint both sides, but it took so long for the first side to dry and I used so much white paint, and I ran out of time and motivation, thus ended up not painting the other side. I may do so next year. Or, I may make different ornaments depending on how these store. 

 

 

 

2. Dried Orange Slices
Ingredients:
Oranges
Directions:
Slice oranges into even thickness slices and place slices on parchment lined baking pan. Pat with paper towels to blot juice. Bake at 200 degrees for 2 hours or until dry and desired degree of color. These get darker with longer baking. Allow to cool fully. Once cool, use a tapestry needle and fine, clear beading thread to make hangers. I threaded the needle with the line, then used the needle to puncture a hole near the rind, and pull the line through. I strung all of my slices on, then gradually cut off desired length to line and tied. 

3. Salt Dough

Ingredients:
2 cups flour
1 cup salt
1 cup warm water
Directions:
Sift together dry ingredients. Add warm water to make a dough. More or less water may be needed. I added most of the water, then all, then got additional. Knead the dough for several minutes to help finish mixing and make the dough smooth. Roll out to approximately 1/4 inch thick, cut with cookie cutters. Poke holes for hanging the ornaments in the top with a drinking straw or use a toothpick to poke and enlarge a hole. Bake at 225 degrees, 2 hours or until dry. Cool completely before decorating. I used white acrylic paint to make the snowflakes white. Then, I used glitter fabric paint and it worked well. Allow the paint to dry fully. Once dry, I threaded clear beading thread through the hole in each ornament for hanging. 

 

 

 

Do It Yourself "Tree Skirt"

All you need is a white sheet or piece of fabric. I was going to use a flat sheet but had no white ones and none of my others looked Christmasy. Stores didn't have inexpensive white flat sheets in stock. So, I ended up at Goodwill looking for sheets. I found a decent sized piece of white tulle fabric at Goodwill and my sister gave me an old white dust ruffle that had seen better days. I layered the tulle over the dust ruffle and draped and arranged it around the base of the tree. I grew up with a white sheet as a tree skirt and it always made me think of snow. So, this was fun to incorporate old memories. 

 

2022 Observations
Written 12/18/22

All of the ornaments actually stored pretty well from last year to this year. The orange slices darkened a little, but I still used them again this year. The glitter fabric paint yellowed somewhat. For now, I am still using the ornaments as is. However, I have enough extra ornaments from last year that I never finished decorating, that I can easily try other options to get sparkle, but without a huge glitter mess. The gingerbread salt dough village has still not been created. The crocheted popcorn garland is in progress, but since I did not start it until a few weeks ago and have been super busy with work, the garland will not be ready this year either. 

 

I am thoroughly enjoying having a Christmas tree decorated with homemade ornaments. I love the way it looks and I enjoyed getting to make my ornaments myself!

Copyright © 2022 by Only By God's Grace. All rights reserved.

Reflecting Over 20 Years

This date (October 24, 2002) is one my body will not let me forget. I have written about this date and what happened in the past. The last time I wrote about it was five years ago. I finally had some answers at that point. Enough has happened over the past five years that it is interesting to reflect back again now. On this date 20 years ago, my life was changed in a split second by a random stranger. The car I was driving was struck from behind by another car. The other driver was not paying attention. I was fully stopped, waiting to make a turn. The other car was traveling at full speed. The impact totaled both vehicles. The impact also introduced me to never-ending chronic pain. I already had a history of non-healing injuries, but nothing that matched neck and back pain that never gave me a break. Chiropractic, physical therapy, and other treatment strategies only provided partial relief. I longed to know when I would get better, back to normal. The initial prognosis was three months to give my body time to recover. Three months came and went and I was not better. After I passed the 6-month mark, I was told it was chronic pain and it might not ever get better. I was not prepared to even contemplate never getting better. I clung to hope that someday, somehow, it would get better. Over the years, I gradually learned to accept that pain is part of my life, part of my normal daily existence. Over the years, it also became very plain that there was something else underlying my inability to recover fully from the accident. I not only had chronic pain, but also chronic fatigue, numerous allergies, various other issues. After several years, things sort of calmed into a manageable state and I moved out of state for graduate school. The stress of graduate school slowly, but surely, undermined the control I had gained over pain, fatigue, and other issues. I ended up with massive pain and fatigue flares, allergies out of control. I also needed five surgeries during the time I was in graduate school. The wear and tear on my body was such that I completed my Master's degree, but withdrew from school just shy of completing my doctorate degree. I have still never been able to complete this final degree. Instead, I had to accept that my body cannot handle the stress of graduate school and academia. My final semester of graduate school, I finally was given partial answers to the medical chaos that had been my existence for so long. I was diagnosed with classical Ehlers-Danlos syndrome (EDS) and mast cell activation syndrome (MCAS). There was suspicion of dysautonomia, but I was not diagnosed with neurocardiogenic syncope (NCS) for another 1.5 years. 

Five years ago, I finally better understood why I could not heal, why I could not fully recover. What I did not know when I wrote five years ago was that another car accident was in my future in just a couple of weeks (November 8, 2017). Once again, a random stranger struck the vehicle I was driving with such force that both vehicles were totaled. I was in shock that it had happened....and that it had happened again. This time I was t-boned by someone who ran a red light. I was 3 months post-op my second hip surgery (right hip), at the time and my hip surgeon had me get checked in the ER to rule out fractures. I checked out alright, but pretty much lost the ability to walk more than a few steps at a time. However, my entire body hurt so much I could not manage crutches again, either.  It was a long and scary several months as I tried to recover and questioned if I'd be able to recover, and if so, to what extent. I was clinging to the Lord to just get through each monument of each day. 

The blessing of knowing about the underlying conditions this time, meant I was able to be more proactive and I better understood what was happening. Gratefully, after several months, I actually returned to previous baseline without additional repercussions. There have been several more surgeries since then, but for EDS-related issues and not due to the second car accident. 

Fast forward another five years, and I have gained better management of the various chronic medical conditions. I am not pain-free, I do still have intermittent fatigue, allergies, propensity to almost pass out if not careful, etc. But things are managed well enough that I was able to start working again three years ago and I am still going strong. All of this is only in God's strength and by God's grace. He has carried me through many difficult years. He is good. He loves me. 

Similar to my written thoughts several years ago, I never would have asked for chronic pain. I still would love for the pain to end. However, I would not ask to have the last 20 years of my life back pain-free. The reason is still the same. God has taught me so much more of Himself through the difficulties of pain, disappointments, inabilities, disabilities. 

Romans 8:26-28 (KJV)
26 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered.
27 And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God.
28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.

https://www.biblegateway.com/passage/?search=Romans+8&version=KJV

Copyright © 2022 by Only By God's Grace. All rights reserved.

2020 Medical Travel Update

I have not posted much for a while. I have been doing well in some respects, really not well in others. I am working, still rehabbing from various surgeries and injuries. There was a surprise test result summer 2019 that put the planned next steps on hold indefinitely. That test result also triggered greater concern and further evaluation of the underlying Ehlers-Danlos syndrome. We ruled out the more serious subtype via genetic testing. This was a relief. However,  as symptoms continued, and gradually increased,  I was in a watch and wait period. Nothing could be done until my body healed more and there was nothing we could do to speed up the process. Fast forward another year and things are worse instead of better. I have had tests every few months but my body is still not healing. I saw the Omaha surgeon again end of July and he informed me we were at the point of surgery but there were a lot of risks and he was not optimistic about the desired outcome. He recommended additional perspectives and referred me to a different Lincoln surgeon and to Mayo Clinic. I was grateful he was wanting as much information as possible before surgery. The Lincoln surgeon appointment was the middle of August and he was thoughtful and thorough. He had additional questions and testing that he would order. However, he felt that I would be better served in a larger clinic and he recommended Cleveland Clinic and referred me there. Neither of the local surgeons wanted to proceed with testing until I had been seen elsewhere as they anticipated Mayo and Cleveland would do their own testing and no point in repeating. Thus, I was in a holding pattern. There was nothing anyone could do. There have been some incredibly miserable times. I have continued working, but I have been struggling. 

I heard from Mayo Clinic scheduling first and they had appointments available less than two weeks from when they contacted me. I heard from Cleveland Clinic the next morning to schedule and they got me in the next week. Wow! Grateful, but overwhelmed. 

I was in Cleveland middle of September and at Mayo the following week. It was a lot of traveling, a lot of appointments, and a lot of testing. But, I felt like I was in great hands at both locations. Both surgeons were experienced and knowledgeable about the specific issues I had and how the Ehlers-Danlos syndrome complicates things, but were not afraid of the complexity. Both were optimistic about surgery helping and successful outcomes. These two surgeons know and respect each other and neither is pressuring me one way or the other. I still need another test, but they were fine with me getting this done locally and results sent back to them. We will go from there. It does look like surgery will be happening as soon as we can get things coordinated. I am leaning towards Mayo for surgery after all of the appointments. 

There are still unknowns. But I am grateful for how things have fallen into place. God has shown Himself sovereign and has gone before. This is encouraging and reassuring. I am honestly a bit fearful of surgery based on what happened last time but I am also desperate for help. I am more hopeful and optimistic after these appointments and I am so grateful that I was able to travel. I am also exhausted after all of the travel. Prayer regarding wisdom and timing for surgery and more travel. I have had surgery out of state before but not inpatient surgeries out of state. Prayer for patience while waiting to get testing completed and surgery scheduled. Prayer for endurance as I continue working and trying to keep up with home tasks in spite of significant pain, symptoms, and not feeling well. God is good. He has shown Himself faithful. Sometimes it is last minute, but always in time. His grace is sufficient. 

Copyright © 2020 by Only By God's Grace. All rights reserved.

Homemade Pecan Pie

The holidays have a way of feeling a bit chaotic at times, but I so much enjoy the baking that goes with them. I had not made pie in years, but really wanted to make a pecan pie for Thanksgiving this year. First hurdle, was I could not find my box of recipes anywhere. I think it may be waiting to be unpacked. Thus, this left me starting completely from scratch. I looked over numerous recipes online, looking for something that would lend itself to modification with greatest chance of working. I ended up modifying a crust recipe from a cook book and a filling recipe that I made up using what sounded feasible. I was taking this pie to a large family Thanksgiving get together. Thus, I really wanted it to turn out, but had no way to check until the pie was served.

Pecan Pie Recipe

Pie Crust
3 cups whole wheat flour (I used white whole wheat)
1/2 teaspoon salt
1 cup butter
1 egg
3-4 tablespoons water.

Mix salt and flour. Cut in butter until mixture is crumbly. Beat egg, add water to egg, then pour into flour mixture and mix until dough forms. Roll out to desired thickness, fit into pie pan.
Notes: I suspect this was supposed to be a double crust based on amount of flour and butter, the amount it made confirmed this guess. However, with whole wheat crusts, I find it more challenging to get them rolled as thinly as with all white flour, and I find whole wheat crusts to be a bit more fragile. Thus, it is easier if there is excess dough. the excess dough scraps bake up nicely as "crackers" of sorts.

Pecan Pie Filling
2 cups pecans
1 cup honey
3 eggs
6 tablespoons butter, melted
1 tablespoon vanilla
1/4 teaspoon salt
sprinkle of cinnamon and nutmeg

Spread pecans in bottom of pie shell. Mix together honey and eggs, stir in melted butter, vanilla, salt. Whisk all together. Pour over pecans in pie shell. The pecans will float to the top. I pressed them in enough to make sure the tops of the pecans were coated with the filling mixture.

Bake at 350 degrees ~25 minutes, with foil covering edges of crust. Then remove foil, bake additional 20-25 minutes until knife in center comes clean, or the filling is set.

The pie came out of the oven absolutely beautiful! I was so excited. But, I still was not sure on taste. The extra pie crust scraps gave us a sneak preview on the crust--it was really good! Thanksgiving Day came and pies were brought with us. The pie turned out well! I was not the only one who liked it! So pleased it worked!

Homemade Pecan Pie!

Note: this post was written 11/29/18, but I did not get photos edited before surgery early December 2018, then have not gotten around to finishing the post until now. The pie turned out well and I made it again this year, relying on the draft of this post for my recipe!

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

Homemade Pumpkin Spice Granola Recipe

I woke up this morning to frost on the ground and below freezing temperatures. I have been noticing more leaves falling. It really feels like autumn.

Cool weather makes me feel like baking.  I make granola often and have previously posted my basic recipe and a few modifications. However, I keep experimenting. There are more recipes coming once I actually get them consistent enough to be an actual recipe. I tend to start with ideas and make things up as I go. Anyway, I finished the last of the previous batch of granola this morning, so planned to make more. The last batch was applesauce spice. I wanted to try pumpkin spice. This flavor was given family approval on the first try and I knew what I did. The applesauce granola and the banana nut granola recipes are in constant flux, but hoping to get them finalized and posted one of these days. Spoiler alert, the pumpkin and apple granolas steal ideas from the banana nut granola. Anyway, this recipe has some seemingly odd ingredients but they work well. As usual, no guarantees that I won't change the recipe in the future. In fact, I can almost guarantee I will change the recipe over time. I always do.

Pumpkin Spice Granola

6 cups old fashioned oats
1 cup walnut pieces
1 cup pecan pieces

1 cup cooked pumpkin
1/2 cup peanut butter
1/4 cup unrefined coconut oil
1/3 cup olive oil
1/4 cup honey
3/4 cup pure maple syrup
2 eggs

1 tablespoon cinnamon
1 teaspoon nutmeg
1/2 teaspoon ginger
1/2 teaspoon cloves
1/2 teaspoon allspice
1 teaspoon salt

Mix oats and nuts together. Mix peanut butter, oils, honey, and maple syrup, whisk in eggs. Stir in salt and spices. Pour liquid ingredients over dry ingredients and mix well. Pour into greased baking pan and bake at 300F for about 1 hour,  stirring every 20 minutes. Let cool in pan. It will harden more as it cools. I store this in an airtight container in the refrigerator. Enjoy! 💗

Notes:
Essentially, there should one cup of oil/fat, one cup of sweetener, one cup of pumpkin.

I used canned pumpkin. I planned to use all peanut butter, but was running short so added virgin coconut oil and extra virgin olive oil. The unrefined coconut oil has some coconut flavor, which I like in granola recipes. I planned to use maple syrup and no honey, but there was just a tiny bit of honey that seemed to be begging to be used up. I  debated adding molasses, but decided that is a future experiment. I was going to add coconut, but was out. I have used the pumpkin, peanut butter, maple syrup combination before, but not in granola.
I have been using peanut butter in granola for quite some time and had updated my earlier recipe to reflect this. This summer I have been using mashed bananas in place of honey and peanut butter in place of oil and it gives a good combination of flavor. The eggs were just an idea to boost protein some. I quickly discovered that they also make granola clumpy and stay that way instead of disintegrating into individual oats as most of my homemade granola does. Thus, eggs have become a normal granola ingredient for me. I also added chia seeds to this, but just poured. I would guess maybe a couple of tablespoons? I used two 9x13" pans. If using only one pan, it will take longer to bake and may need to decrease the baking temperature.

Obligatory note reminding that infants under one year of age should not have honey.

Pumpkin Spice Granola! 

PS: this is my first blog post completely written and edited from my phone. This is my latest trick. 😊

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

2019 Bible Reading Plan

Yes, I know it is July 1, not January 1. The reality is, I only recently, in the past weeks, figured out a feasible plan for this year. I normally follow some plan to read through the entire Bible in a year, plus read a devotional as well. I keep a journal to jot notes of what I am learning. I have done this since 2000. Each year has the same overall plan, but the details vary. Well, last year started out on track as normal. Shoulder surgery threw a bigger interference than I had anticipated. I had stayed on track after hip surgeries, surely I could after shoulder surgery. That was not the case. Instead, I found inability to use my left arm at all really interfered with holding a Bible, devotional book, notebook, writing, etc. I have been getting Streams in the Desert via email for years, but I like my print copy version better. I started just reading the emails. I tried to catch up with Bible reading later after surgery once I could hold books and take notes better again. I was so far behind, that it was daunting. I kept working at it anyway. I had an inpatient surgery at not quite four months post-op shoulder. I planned to do my reading in the hospital, but knew it might be via phone only. What I did not expect was being so sick that I could not keep up with basics via phone, an emergency later surgery, moved to ICU, in the hospital a total of three weeks. I was so weak, I had no energy for anything. Even once home, it took time to regain my strength. It was also already the new year with no time to catch up or plan. Energy went into recovery. I sort of floated along for a while. I went back to reading Streams in the Desert on my phone. I knew I needed more, but could not figure out what to do. I did not want to pick up where I left off last year as I would just feel behind. Then, I thought maybe I could pick up where I left off last year and use the rest of this year to finish. But, I have more surgery coming. It is still challenging to read, write. I also did not want to get trapped in feeling like I had to complete something and working so hard to finish that I missed the message. With prayer, I came up with the following plan. I am still reading Streams in the Desert via email via phone. Additionally, I am now also reading Daily Light on the Daily Path and My Utmost for His Highest, also both via email via phone. My Utmost for His Highest has a link at the end of each day to a One Year Bible plan daily reading, with a passage from both Old and New Testaments. This appealed to me as it is all electronic, can all be done with my phone, it is a different format for Bible reading, and my three favorite devotionals. The Bible reading directs to Bible Gateway, has the exact passages linked, is using New American Standard Bible version. This fits in with my past reading plans, but is different. There is no urgency for completion. I have missed a couple of days and it is alright. The journaling portion I am still struggling with. I had the brilliant idea of copy/paste screen shots of the readings, but on day two of this, Evernote informed me I had used over 50% of my storage. That ended that experiment. The next idea was to copy and paste the links from emails into Evernote, then jot notes from there. However, technology is not really my strength and I cannot figure out how to get the links from the emails on my phone. I can on computer, but that sort of defeats the purpose. Thus, for now I have a reading plan, but no journaling plan. I can use the names of the devotionals, or passage from Scripture as headings in Evernote and jot notes underneath, but would really like to be able to link directly. Grateful to have a plan that works for me at this time.

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

Shoulder Rehab Progress: 4 to 6 Months Post-op

My shoulder was doing really well and looked to be making gains through four months. However, another surgery just days shy of four months post-op shoulder left me struggling just with the new recovery, thus all shoulder rehab on hold.

I was in the hospital at four months post-op, had been home from the hospital a week or so at five months post-op, but still pretty weak and tired. Finally feeling better around 6 months post-op, so finally working on blogging and updates.

Six months post-op shoulder finds me less capable in some respects than at three months post-op. However, my shoulder is better in other respects. It is hard to describe. I have greater confidence in my shoulder's ability, but it is not as strong. I did restart physical therapy late January. Therapist pleased that my shoulder and hips came through the ordeal as well as they did. That was encouraging to hear.

Small boost of encouragement recently. I was at the pool and a physical therapy assistant who had worked on my right hip early post-op a year and half ago was there. I had not seen her at the clinic in a long time, so asked if she still worked there--yes, but another location. As we chatted, she said I am doing really well for post-op so much and that swimming and pool work is the best thing I can do! That was reassuring!

Where am I at with activity? Walking laps in a hallway at home, swimming laps, pool walking, rehab in the pool, some simple rehab on land. Core is still resisting waking up, but will activate fine in water. I can grab and lift a full gallon of milk from the fridge with my left arm without issues. I can reach overhead, but have some difficulty, especially if early morning and have not stretched yet. The swimming is 50/50 freestyle, backstroke, so lots of shoulder work and it handles that. I do swim a few laps of breaststroke, but not kicking as more concerned for hips with the speed of the kick and range of motion used than I am for shoulders. Hips can do whip kick, but with current atrophied state, not trusting things. Just because I *can* do something does not mean I *should* do it.

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

Hip Rehab Progress: 15 to 18 months

15 Months Post-op

My second hip had surgery when my first hip was a little over a year post-op. So, I have never known what the normal course of hip recovery is beyond a year. Well, my shoulder had surgery when my second hip was a little over a year. Thus, I am not sure I will ever know what normal progression is. Besides, my body has never liked to follow normal patterns anyway. I had not really decided if I was going to keep updating on hip recovery or not. Both hips are doing so well. However, a few things are making me think it might be interesting to update. First, it is now five years since my first hip became so severely painful I could barely limp around. Yes, it took two more years to actually figure out it was my hip. Secondly, the back pain is back to higher levels again after being somewhat better. Old compensation patterns are not only resurfacing, but getting stronger again. However, hips are still fine. No hip pain. No indication of giving way. None of the other signs I later learned were blatant hip pain. What is going on now? No one knows. EDS and MCAS both flaring.

Creativity ever to the rescue--wearing both SI joint support belt and the waist strap to my hip brace as a back brace. I have gotten far more use out of my hip brace as a back brace than I ever did as a hip brace. Physical therapist was impressed with my resourcefulness, suggested another option for back brace, but said what I was doing worked well.

18 months post op right hip (2.5 years post-op left hip)

I clearly never got the 15 months post-op post published. So I am just adding to it. 18 months post-op left me rather behind. December had two major surgeries, a lengthy hospitalization, and I ended up losing most of my strength, endurance, having to start over with rehab. I had prepared for surgery as I always do--stayed on top of exercise and rehab, went into surgery strong. However, unanticipated issues arose and second emergency surgery became necessary and much longer hospitalization than planned. Hence, global atrophy in spite of having worked hard to go into surgery strong. (But, it could have been much worse if I had not been strong for surgery.) Hips are still both fine, but lost their supporting muscles, thus not able to do much. The back pain was horrible in the hospital. I hardly needed pain medication for the surgeries, but my back was awful. Physical therapy at the hospital was coming to take me for walks (I was not allowed out of bed on my own because of fall risk, numerous IVs, lines, tubes everywhere). At one point, I asked for tips to help with my back and they were so nice to check postures, how I was getting in/out of bed, with me explaining I was protecting abdominal incision, but also protecting left shoulder. I was told I was moving well, doing all I should. However, I was given tips to try to help lessen back pain. It still took trial and error, but the final days were less miserable. Although, that may be also being less limited, more able to move enough to shift position some on my own.

I am not able to wear most of my compression clothing or braces because I am still swollen and healing from the abdominal GI surgeries. However, a nurse gave me a binder that can be used as an abdominal binder or a back brace, or both! I can also get the SI belt on and it sits low enough not to bother too much, but is uncomfortable as some of my scar goes that low. I also discovered that the elastic/Velcro straps for the cooling pad for my cold therapy machine works well for back support! Because they are narrower than most support belts/braces, I can better position the straps in ways that are less pressure on still swollen abdomen, yet still get some back support. Anyway, it is helpful to have some aid with back support. I may need to try kinesiology tape again, too. I do have my TENS/NMES units back out and using them. Also back to icing, heat for back. A physical therapist helped explain something I have always wondered. This is that my body either loves or hates compression. It either feels amazing, or I cannot stand it and have to get it off. She said when it feels good, it is because my body needs support. When it is uncomfortable, it is because of an inflammation issues. So, my abdomen not liking pressure is because of ongoing inflammation from surgery and infection even though healing. My back needs support.  

Back to hips. My left hip is fine, nothing seems to phase it. Right hip is tight and a bit sore at times. I am doing tummy time again to gently stretch out hip flexors. I discovered I can do TENS at the same time as tummy time so that gets both done without stressing me any further over how much time goes into rehab and recovery.

All rehab is in the pool for the most part. Physical therapist had me focus on pool work after the accident last year when struggling, and he is having me focus on pool work now. The goal is to get me strong enough to do more on land again. My body thrives in water. The water feels good, supports me, lessens pain, gives positive feedback, gives gentle resistance, works my whole body gently. My core is shot from surgeries, trauma. It will not activate on command--isometrics, or trying to engage for abdominal brace just do not happen. But, my core will engage and work in the pool. So we are using swimming and pool walking to help with shoulders, hips, back, and core! I can walk laps in a hallway at home and I have walked outside a couple of times on unusually nice days. Walking distance is pretty normal, but pace is not back to pre-op these last surgeries. Still, grateful for progress!

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

Trusting God When the Unexpected Happens

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

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

IV "Christmas tree"

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

Christmas Tree!

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

Christmas Eve sisters' tradition at the hospital

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

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

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

Home for Christmas!

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

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

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

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

We all have my mom's smile!

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

John 3:16 (KJV)

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

Isaiah 9:6 (KJV)

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

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

Shoulder Rehab Progress: 3 months post-op

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

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

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

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

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

Shoulder Rehab Progress: 2 months post-op

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Reality is, my body needs to move.

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

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

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

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

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

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

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

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

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

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

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

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

Sign posts on the beach are now in the lake. 

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

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

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

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

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