Sunday, September 27, 2020

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.

Sunday, December 1, 2019

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.

Saturday, October 12, 2019

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! 💗

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. 

Monday, July 1, 2019

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.

Tuesday, February 26, 2019

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.

Friday, January 4, 2019

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.