Life in Crystal's World

Moving

2023-07-16T13:34:00.003-04:00

Content from this blog has been migrated to www.coloradocrystal.wordpress.com. Please visit this link for future posts.

Life Balance - Fatigue

2023-04-15T22:34:00.000-04:00

Recently I’ve posted a couple times on my need to find a way to balance health concerns. My immunity was very low for a fairly extended period.

The first big symptom that I have for low immunity is fatigue. This is different than exhaustion that might come from significant exercise or activity. I’m not sure that I can explain the difference but it is palpable.

I found this Cleveland Clinic discussion on fatigue that seems to define it pretty well.

When I am fatigued, I often feel a like there is a weight laying on my chest. How heavy that weight is can how difficult it is to get around and take care of tasks.

I've learned that when I begin to feel any level of fatigue, it is time for me to back off from in-person interaction. If I do not, then fatigue gets worse and other symptoms of illness may develop.

There are some days where the fatigue is mild. I still have enough energy that I COULD take a class at the dojo or go to church or [insert group activity here]. The fallout would likely be that tomorrow I would be able to get up and work but do very little else. Or, perhaps, I might be ok tomorrow but repeated exposure to people adds up to knock me down hard after a few days.

There are times when I could handle interaction with one or two people when the fatigue is mild. Sometimes I need that small interaction for my mental health.

But usually, on these days, I try to listen to my body: stay home, train on my own, play with the dogs a little extra, and take care of personal administrative tasks. If the fatigue gets heavier, I might binge watch some classic TV comedy so that my energy is reserved for work hours. I take a lot of naps.

I am learning to look ahead to my week, calculate people exposure, and make strategic decisions to support my immune system.

How many doctor appointments and what kind? Some have more risk of exposure to illness than others.
Any in-person work meetings?
Are there social events at restaurants?
Do I have any travel?
If I went to church in person this week, how full was the auditorium? Is a larger or smaller than usual crowd expected next week?
Based on expected exposure level, what classes can my body handle this week? Should I attend church in person or virtually? Do I attend that work meeting in person or virtually?

Some friends have asked why the volume of exposure to people matters. Here’s my best I’m-not-a-doctor explanation.

Every one of us is carrying around germs all the time. Most of the time, it is no big deal because the immune system is designed to address the germs of another person. An autoimmune disease means that my immune system is not functioning quite as it should. In fact, when it gets a little nutty, my immune system actually attacks my body instead of helping it. I am on an immunosuppressive drug to keep that nuttiness from occurring. Suppressing my immune system so that it will not attack me makes it less able to help ward off germs.

I started out this post saying that my immunity has been down for an extended period of time. I had two glorious weeks of no fatigue in which I took as many classes as I could, attended services - including Good Friday and Easter with the masses - and went out with friends. I was so excited to have energy that I probably overdid it. Not sorry, even if I pay for it over the next couple weeks.

I had to slow down for a few days to make sure I had energy for events later in the week. This has been my reminder to work on making a habit of intentionally calculating expected exposure and energy expenditure.

For Women's History Month, A Little of My History

2023-04-03T21:48:00.002-04:00

Sometimes I start writing a post and get delayed because life happens. And then I think, "It's too late to post that now." Women's History month is over and I started writing this a while ago... but life happened and I got delayed. This time I decided to go ahead and post it.

Here's a little of my history as a woman in a technical field...

March was "Women's History Month". Some of the stories I read throughout March gave me pause to reflect on the people who have influenced my life, who gave me a chance, and whose teaching pushed me to where I am today. The list is very long and the stories are many. This post is to acknowledge a very few who instilled confidence to begin the journey that has been my career.

From earliest memory, my older brother cajoled, harassed, and protected me. When other people implied that I couldn’t do something, he would say, "You're smarter than that." He may have teased me for being a nerd, but he never once asked or allowed me to dumb down my intelligence.

I don't remember spending very much time with my Aunt Cathy or my Aunt Victoria prior to college. Maybe I saw them one or two times a year, at the most. They didn't waste opportunity. They asked questions that required critical thinking and expected me to be intelligent.

Aunt Cathy made sure that I understood that being a smart girl was good. Sometimes her primary opportunity to communicate was through the gifts she sent - toys (some of which I quickly disassembled to investigate mechanisms), educational games, books. That intentional connection said that who I am is worthwhile. In terms that I hear often today, she taught me "to be my authentic self".

I remember Aunt Victoria always had some new thing to show me, often on the computer. At the time, I didn't know what she did for work, but I knew she was smart, she worked hard, and she appeared to be well respected. She convinced my father that we needed a computer at home… and I promptly became the primary non-game user of that machine.

While these three built a "You can do what you choose to learn" foundation, my Uncle Murrell asked me to put my learning into action and he set the bar high. I remember 2 very specific situations that influenced my career.

I was about 16 when Uncle Murrell opened his recording studio. It wasn't far from our house.

One weekend my parents were out of town and my car had broken down on my way home from work on Friday night. Uncle Murrell called the house in a panic - something was wrong with his office computer and he wanted me to figure out how to fix it. Worst case scenario is that I try.

I grabbed the keys to my dad's little truck and made my very bouncy way to the studio. It was only my 2nd time driving a stick shift and I didn't know to hold the brake when shutting off the vehicle. Thank God for the parking block because that truck would gone through the window of the business.

My Uncle saw that error, educated me on proper parking, and pointed me to his computer. I found the problem and got the machine working again. I didn't think it was a big deal but He made a big fuss to everyone about His niece fixing the machine.

The next year I was given the opportunity to compete for a scholarship which required a recorded speech. I asked him for help, thinking it would be a quick thing. He was not going to let me have anything less than a well done, professional recording. He made me work hard and learn what equipment would enhance the production, teaching me to be concerned with quality of small items because they affect an overall product. I won that scholarship and, 30 years later, I am still using his lessons.

Really, 30 years later, I am still using the lessons of all of them: my brother, my Aunts, and my Uncle. Many thanks for their confidence and for the time and care they invested in a teenager/ young adult who didn't appreciate it nearly as much as she should have at the time.

Still Finding Balance

2023-02-05T08:59:00.001-05:00

I’ve received a few questions this week about how things are going with managing the Rheumatoid Arthritis.

I appreciate the questions as sometimes I get wrapped up in the task list of managing and do not remember to communicate.

Physically speaking, it’s a balancing act - not referring to my foot but to keeping from illness - and I haven’t quite gotten the hang of it. When I started taking the pharmaceutical in July, I knew that I was making a trade: long term mobility for more frequent illnesses. An immunosuppressive drug to keep my immune system from attacking my joints also suppresses the ability of my immune system to ward off illness.

Therefore, as discussed previously, I am learning to be more active about managing my lymphatic system. I haven’t mastered it. There are a couple of smaller tasks that I need to work on adding to my daily routine that will help.

My doctor said that part of managing the lymphatic system is exercise. If there is a circumstance that impacts my ability to get to a class, I need to find other ways to exercise. I’m still figuring out whether there is a threshold at which lack of exercise leads to more illness. Figuring that out will allow me to be more proactive about managing around unexpected circumstances and changes in routine.

Emotionally speaking, managing has been more stressful because other people don’t listen and respond well.

When immunity is low, I have less energy and may need to limit how I interact with other people. I am aware of my limitations and am very up front about communicating them. Having limitations doesn’t mean that I do not want to or should not participate in an activity; it just means that my participation is modified. I will communicate my limitations and modifications.

This is not so that other people will feel sad or find the need to cut short their own participation. In fact, that response is actually more draining and can physically reduce my ability to participate.

Pity is the worst part for me. When someone expresses pity because I have limitations, it is an emotional invitation to have a victim mentality. A victim mentality does not help anyone achieve victory in any scenario. Instead, it invites one to view him or her self as one who doesn’t have a chance. DO NOT DO THAT. I am working very hard to not be beaten by this disease.

Treating me as a victim communicates that I should not spend time with you because you are not listening. I’m a little like Horton the elephant - I say what I mean and I mean what I say. If I say, “I want to go with you. Please be aware that I have to wear a mask this time”, I mean that I want to spend the time with you and participate in that activity but I don’t want you to be surprised when I put on a mask to help protect myself from the masses. In this case, I know that my immune system is struggling. Likewise, “I need to sit in the car while you go in but please take all the time you want” means that my energy is low and the time I can spend sitting alone will help me recoup some energy (which allows me to spend more time with you). Rushing back may actually cut short what I can recoup so actually take the time you need.

If I agreed to a modified participation in an activity, it is because I wanted to spend time with that person or group. The alternative is that I stay home and do not participate at all. I’d rather have some fun with my friends than none.

Additionally, my Hope is not in my physical ability to function. My Hope is in the God who knew in advance that all of this medical stuff would happen. Inviting a victim mentality distracts from focus on the God who can handle it and puts my focus on my ability (ahem, lack of) to solve the problem(s). That's not good for mental health or forward progress.

For the question, “How is your health today?” It is getting better. The last few days have been a struggle. I had more people interaction than usual in the last 2 weeks. It’s cold and flu season and I missed some of the tasks that help me stay healthy. This morning is significantly better than the previous 2 days and, based on past history, I will probably be fine by tomorrow if I continue to rest and incorporate all the little things that have been missed recently.

Thank you for asking.

Finding Balance

2022-12-17T19:10:00.000-05:00

There have been a few questions about my foot lately. Here is the current status…

I started taking a pharmaceutical in July to help minimize further joint damage. As of September’s x-ray, there has been no additional deterioration to the bone or joint.

The drug I am on suppresses my immune system so illness has been a bigger struggle than before. I knew this was a trade-off when I started taking it.

My doctor lowered my dose by 20% in September because I could not see to recover from illness after a trip. I had been sick for about 3 weeks by that time.

The day after that doctor visit, my massage therapist told me that my lymphatic system is not draining. It turns out that the illnesses I am prone to when my immune system is down is tied to the lymphatic system.

I am learning some about the lymphatic system and managing it in light of being on an immunosuppressive drug. Next week I have an appointment with my rheumatologist for a quarterly follow up and will be talking to him more about this.

As for mobility with the damage in my foot, I am learning to balance more in the center of my foot than on the outer edge. I have found a couple pair of shoes that help to force my balance in the right place and, even without them, I’m starting to get more consistent at walking with the correct balance.

I’m starting to find the right balance point for kicks and some stances in karate but I’m not yet consistent. Sometimes that can leave my foot a little sore by the end of a class, as the incorrect stance can make the damaged bone poke at the soft tissue a bit. Finding the right balance point for each stance will be a process of time.

Thanks for praying and journeying with me.

Recovery Management

2022-08-08T17:30:00.003-04:00

My thanks to Lezah for editing this post.

In April, when I found out about the damage in my foot, my doctor said I couldn’t do karate for the foreseeable future. At a minimum, I was in a boot 3 weeks while we got an MRI and scheduled a follow up with him. This came up about 3.5 weeks before the first of two pre-tests for the black belt exam.

I made it through all the tests and got the boot off a few days before the 2nd pre-test in June. A few people tried to talk me into trying to pre-test. As I hadn’t really been able to work on any material since the end of April, I knew that there was no way I would be prepared.

July was an exceptionally busy month. I knew it would be pretty busy going in and, to manage my autoimmune and energy, I accounted for the known busyness in the way I structured time management.

On July 4th, I learned that I would indeed be testing for black belt. Because stability is not up-to-par, I would not be doing partner work of any type and would only do one kata.

I hadn’t done that kata since April. So, after getting together with the ladies to celebrate the holiday, I came home and started working on it.

I looked at the calendar and pushed anything I could to August so that I could add in more training. I knew I would be borrowing against future energy to push through to the test.

My testing classmates welcomed me back to the group, helped me get to the right mindset and encouraged me pretty much every class. There was also some joking about my “elaborately faked injury”. My friends outside of karate encouraged me in many ways, including prayer to get ready and take the test, as well as threats if I were to hurt myself and, thereby, miss the test. One cannot ask for better friends.

Less than 2 weeks before the test, I still couldn’t stay balanced during kata. Sensei gave me analysis on the problem and it took me the next week or more to get consistent about not pitching forward or sideways.

In the middle of that training, we had some events that gave me insight on how the change in stepping was coming along. While it’s not perfect and there are times when I can still feel the bone poke my flesh, I am getting better about putting my weight/ center of balance on the other section of my foot. So, I started back to partner work, slowly, before the test. Balance is still an issue there but my classmates are good partners, willing to go slow and let me figure it out.

I have almost no memory of the test itself. From the time that I got up from seiza to the end of the kata, I was only aware of a very few things. I’ll have to see the video, when it becomes available, to see how I performed. I heard that the kata looked good and I passed the test so that’s all good.

Last week, I pushed through those things that I had scheduled in August in order to get through July. The next two weeks, my focus is on recovery.

As I expected, my energy reserves are depleted. Fatigue is my constant companion and my immune system is low. Every morning I assess what it will take to get through today without getting sick. My body gives indications that I have learned to read over many rounds of low immunity.

Inflammation was high for most of July and it has been backing off over the last week, so that is an improvement.

It’s not my first time through this so I was prepared. Most of my activities will be low key, sitting at the table or on the couch. I sleep a lot right now. There is nap time built in to every weekend and sometimes on lunch breaks. I have meals in the freezer and the individually packaged salads that grocery stores now offer are stacked in my fridge.

It is interesting how, in the midst of fatigue, there are days when it is hard to sleep without activity. I will still take some karate classes or do some work at the gym because the activity helps my body relax enough to sleep well. It won’t be at the intensity or frequency of classes in July, to be sure.

But, I may have to skip other activities in order to manage. Some activities will take me longer to accomplish than they might normally, as I will complete them in stages. (For instance, I typically do almost all of the household laundry in one day. I am on day 3 of working my way through it right now.)

It doesn’t mean that I am unavailable or unwilling to socialize or participate in events; it just means that I have to be deliberate about choosing activities and there is a greater risk that I could cancel at the last minute due to health concerns.

I have been asked what people can do to help. Prayer is the biggest thing. Please pray for me to have wisdom about choosing activity and for the fatigue to begin to lift.

I have become less shy about asking for help and I know who has been offering. If I come up with a need, I will definitely reach out.

I greatly appreciate the care and concern.

ZZzzzzzz!

2022-07-14T18:54:00.000-04:00

This weekend I was at an event. About 7 hours in, I walked past someone who made a comment about me being tireless. I decided to give a very honest response, "Actually, right now I am very tired, in significant pain, and my brain isn't working very well." He seemed quite surprised but when we needed help later, he was one of most willing to pitch in.

I learned very early that there is no honor in whining or complaining and that a non-verbal complaint can be considered annoying if expressed too often. When a job needs to be done, it is necessary to suck it up and get to work. Hiding pain or some level of exhaustion became a functional skill.

If you look at me and know that I am in pain or if I complain, the level is probably quite high. If I mention fatigue, there is a definitive chance that my body and brain feel very sluggish.

Last week I had a lot of energy expenditure almost every day. I knew I would pay for it this week but I thought that I'd probably be fine by Tuesday or Wednesday, at the latest.

Wednesday is definitely the best day I had all week but I still needed coffee to make it through my evening class. 24 oz of coffee at 6 PM, 1 hour of class where I was probably only active for less than half of the class, and then home to sleep - with no trouble falling asleep. If fatigue is not a factor, coffee after 2 PM will make it hard to sleep.

Sometimes I find autoimmune fatigue as frustrating as the pain. Maybe more so.

Today was a struggle. I could feel the foggy brain when I got up. Water, coffee, water, black tea - hydration and caffeine - to get through the morning. Good friends at lunch and then back to back meetings all afternoon... grateful for some adrenaline to force me through the fog... and by 5 PM, just about ready for rest. Sleep will come early tonight.

The time it takes to recoup energy seems to be longer now than a few months back. Another sign that the disease is active.

So, if it takes me some extra time to respond to you, in person or virtually, please give me a little extra time like my friend did on Tuesday.

He and his daughter asked for a high-five relative to something in our conversation and I am sure the pause while I processed what they wanted was quite long, but they did not rush me. "Yes. High five."

The extra few seconds or minute to think gave me the ability to interact as a friend instead of as a sick person. That makes a big difference for mental health.

Eating for Pain Reduction

2022-07-03T22:10:00.002-04:00

Anyone who has been around me at a meal in the last few years may be aware that I have become increasingly strict about what I eat.

For a number of years, until 3 weeks ago when I started back on medication, food has been the primary method by which I have controlled the inflammation in my body. Controlling my food intake has minimized pain and joint damage, improving by my current pain and overall function as well as delaying the onset of the crippling joint damage effects of Rheumatoid Arthritis.

I just ran across this page on the Mayo Clinic website that explains the relationship between food and chronic inflammation. Sharing it here to help in understanding for those who have struggled with my eating plan.

Just as an example, when I eat something containing sugar, I can often feel pain or mild inflammation in my hands within about 20 minutes. Knowing pain is coming in very short order is a pretty solid deterrent to eating anything containing sugar.

Anyway, I hope this helps with understanding the "why" behind how I eat.

Walking...

2022-06-26T13:18:00.004-04:00

The last week and a half have been very full. Simultaneously lovely and difficult.

I've been reminded that God built us to live in relationship with others. We were not made to be islands of humanity. Except for the gift of Jesus (which trumps all other gifts), friends may be the greatest gift around.

The physical struggle of walking around with a bone poking my flesh from the inside has been real. I can minimize or avoid the pain in the area of the bone by balancing my weight across the first four tarsals/metatarsals on that foot. For the entire time I have been walking, I step from the outside of my foot in. Now I must step more straight - heel to toe.

Much like making any other major adjustment, I have been over-compensating too far the other direction. In attempting to stay off of the damaged 5th tarsal, I've been putting more pressure on tarsals 1 & 2. I really need to put most of my weight on tarsals 2 & 3 to balance well. As Sensei says, "Point the middle toe." (Not as easy as it sounds, my friends.)

Yesterday, I was able to start to feel the right balance point on that foot. I need to figure it out on the other foot, as well.

That is all on solid ground. Working on a training mat or padded flooring is a greater challenge.

The over-compensation the other direction has created some stress on my knee. I think that part of it is may be also that walking on a new structure requires building up muscles or ligaments in a different way than they have been previously used. I asked a friend for help. He recommended the same balance exercises that I was given in PT after my knee surgery, as well as weighted leg extensions (also knee PT) to help me get to right center of balance. I have a lot of work to do.

As the distance that I can walk without pain is not great, I am still driving a little motorized scooter to get around the grocery store. Those things just putz along. I miss moving a little faster but am grateful for the lack of pain after shopping. When I can, I order my groceries and pick up. Not only does it keep me off my feet but Mack gets a ride out of it. He's a big fan of grocery runs because the parking lot is a place where he can hang his head out the window like a big dog.

I have to be careful to allow myself more time to get around and get things done right now. This is a big mental adjustment for me. (Hm... maybe the forced slow down will eventually help kata.)

This week I had a couple of occasions to watch people participating in activities that I enjoy. I had to sit out and watch. It was great to be able to be with my friends during that time but also an emotional struggle. Not that I am feeling sorry for myself but that the inability to participate is another loss to grieve. I've been working through this grief since the discovery of the damaged joint; the last two weeks have been a little more emotional.

I am very grateful for God's gift of friends. These two weeks they have comforted me, laughed with (at?) me at the story of trying to give myself that first injection, helped me adjust training, ignored my statements that I didn't need help, distracted me, and given me perspective. I am truly blessed.

Longevity and Mobility

2022-06-16T22:13:00.005-04:00

Today I called my rheumatologist's office and they were able to get me in right away. Usually I have quite a wait to get in.

We discussed what happened with my foot and other things I've been experiencing since April. I asked if these are signs that the disease is progressing and he said that they are.

It is time to be more active about managing the progression of the disease instead of just the pain. I have a friend to tells me to consider "longevity and mobility". I have been thinking about that but slightly different: longevity OF mobility.

If the disease is progressing at whatever rate this is now and it is not routed or slowed in any way, I will be very crippled before retirement. I have goals in retirement that include being able to move around. Honestly, I have goals now that would get tossed if this thing isn't slowed!

So, I decided that the risks of the medication that was recommended are worth it, if my body will tolerate them. I am still nervous because of how sick I got the last time I was on RA medication.

Tomorrow I start weekly injections. The effects of the meds should begin to be felt in about 3 weeks with full effectiveness around 10 weeks.

I'm a little nervous about giving myself a shot but at least it's not another pill to upset my stomach!

Giving In

2022-06-15T17:00:00.001-04:00

The medications prescribed for Rheumatoid Arthritis are typically not geared at pain reduction. This was not explained to me by my first rheumatologist. I could not understand why the meds did nothing to take the edge off the pain and felt that the 24/7 nausea that resulted was not worth the tradeoff.

Someone recommended that I try the Autoimmune Protocol Paleo eating plan to see if that helped and, indeed, my pain was eliminated.

The doctor agreed that since I was out of pain, I could go off the meds.

He eventually closed his practice and referred me to another rheumatologist.

The new rheumatologist modified my diet even more and requested for me to research a few specific medications geared at modifying the progression of the disease (Disease Modifying Anti-Rheumatic Drugs or DMARDs, for short). In my research I found a statement to the effect of, “Pain is the indicator that joint damage is occurring.” He agreed that I could stay off the meds and monitor the situation.

Circling back to the situation at Podiatry the last few weeks… Both my regular podiatrist and my friends have repeatedly reminded me that my pain threshold is very high and more or less, “Are you sure you would have felt a problem?”

I believe that I know myself very well so I say something that shows that I am not getting their point, “If there was pain, I would do something about it. There hasn’t been pain.”

Sometimes it takes a while to sink in but… perhaps my pain threshold is so high that I wouldn’t actually be aware of joint damage occurring.

Also, I normally need some time to think things through so one of my default immediate decision tactics is to make a decision that will buy me time. So, Monday I said that I would wait for the 3 month follow up with podiatry before going to rheumatology. That way I would know the rate of deterioration (they will take more x-rays and do more measurements).

Actually, I don’t want to mess around for 3 months and just wait for more damage to occur.

There is a lot more information on RA available on reputable websites than there was 5 years ago, which was more than when I started this journey 10ish years ago. Also, there are groups on FaceBook where fellow RA sufferers commiserate and share experiences and information.

I started a little bit of research this week and discovered that a couple of other “symptoms” that I’ve been experiencing are characteristic of RA. I was debating on whether to go to the doctor over those so, I won’t. But when I started to put the whole timeline of those symptoms together with the foot and the fact that I’ve had RA pain flares 3 times in the last 2 weeks without any dietary reason, I realized that my body has probably been in an RA flare for a few months and I didn’t know it.

There is still more learning to do. It overwhelms my brain.

But short term action…

I emailed the rheumatologist this morning and asked for the list of meds to research. I will look back through old pharmaceutical records and see if I can find the name of the one(s) that made me sick (so as to avoid). And I’ll probably move up my appointment with rheumatology to get started on modifying the progression sooner than later.

We’ll see if research leads to a different game plan in the long term.

Give it the Boot

2022-06-13T18:22:00.002-04:00

The CT report says, "In conjunction with adjacent fifth MTP joint distention..., the findings are felt most likely secondary to inflammatory arthropathy." Arthropathy = joint disease... aka Rheumatoid Arthritis. AND "These findings are not characteristic of malignant neoplasia." So, not a malignant tumor.

The doctor took some more x-rays and did some measurements. Then he let me know that my RA is causing joint deterioration in this area, as stated in the CT report.

We'll monitor every few months to see the rate of deterioration and I'll work with my rheumatologist on the forward plan. I've known for years that joint deterioration was coming sometime.

I am back in normal shoes and can return to normal activity. Sayonara to the boot.

Mack is off the hook... I don't have to go find the places he hides bones in the yard. 😂😄

Thank you for praying the last couple of months!

Immunity and a CAT

2022-06-08T20:17:00.000-04:00

Two things today...

First, my immune system has felt low since Sunday afternoon. I don't want to have to cancel my Monday doctor's appointment over illness. Therefore, I will be limiting my in-person interaction to providers and those who are going with me to appointments through Monday. After Monday's appointment, I will reevaluate based on immune health and forward direction from the doctor. I would appreciate prayer for staying healthy and wisdom in decision making at the Monday appointment.

Second, tonight was my CT scan. I told Mack that it would be more fun if it was a DOG scan. He just looked at me. I guess he didn't think it was funny. Sometimes the dog is a ruff audience.

It took less time for the CT scan than it took to get my x-rays at the Doctor's office. It took longer for the office to burn the scan to a disk than to actually do the scan. Meow, meow.

The most interesting part of the visit was the conversation in the waiting room when I returned from the scan to wait for the disk. Without getting in to the details, it was clear that we (my friend and I) needed to be in that waiting room at that time for those people. God arranges these things.

Emotional Truth

2022-06-07T18:00:00.009-04:00

Hard things bring emotional responses. Emotion is, unfortunately, not always truthful.

Earlier this week I found myself telling someone that all the hard things were because of my foot and the resulting uncertainty of my immediate future. Rationally, analytically, logically, that is a patently false statement.

Some things are certainly impacted by it but the foot is not the cause of everything... and, in fact, there are certain things not even impacted by the portion of bone that is missing.

It helps to remember the practice of Philippians 4:8. Think about things that are excellent and praise worthy.

Or, as this lyricist says it, remember who handles the storm. It's particularly (emotionally) satisfying to crank up the bass a little.

https://open.spotify.com/track/4Uvjwj4KWFlyCULhR9zeTx?si=UEdld6WvSGywdY3czxrkAQ&utm_source=copy-link

CT Scheduled

2022-05-27T15:35:00.001-04:00

CT scan has been approved by insurance and is scheduled for June 8.

I won't have good results until after a follow up with the specialist. That appointment is not yet scheduled.

Expect it to be after June 15 for me to have any further update.

No, No News

2022-05-24T21:08:00.001-04:00

The referral for a CT scan was supposed to be faxed over on Thursday morning. It's the same radiology department that did my MRI.

For the MRI, they called me within 24 hours of receiving the referral. I haven't gotten a call to schedule the CT yet.

Anticipation grows when timeframes are not defined. I am starting to get a little antsy.

Today I texted my doctor and asked if he could verify that the referral went out. He's checking on it.

Meantime, the furry kid showed me that if mom won't get off the couch and open the unlatched door, even a tiny guy can be resourceful enough to grab the weather stripping with his teeth. As if to say, "I do it myself!" ... Just at a time when I needed a little comic relief.

Also, questions have come up about the difference between MRI and CT Scans and what they show. This webpage is not from any of my providers but they have a succinct, direct explanation that made it easy for me to understand.

Dr. Doggy

2022-05-21T09:00:00.008-04:00

One thing that has been bothering me about my foot problem the last few weeks is the my dog's response.

When I tore my meniscus, he wouldn't let another dog near my leg. He was very protective of it. After I had repair surgery for both ACL and Meniscus, he carefully went around the bandage and incision. As the incision healed, he was willing to move closer to the knee. But he never touched my knee until it was healed.

I think he can smell an incision, infection, or whatever. If it's not that, there is some way that he knows when there is tissue damage.

With my foot, he acts like nothing is wrong. At night he doesn't mind leaning on my foot to sleep. Last night he dropped a small ball on it with no thought.

Based on this multi-week consultation with Dr. Doggy, I am struggling to believe that there is any infection in my foot.

My doctor called me Wednesday evening and told me that, after a consultation with the doctor to which he is referring me, they are leaning toward the thought that the bone may be dying because of damage to the blood vessel feeding it. Since a dying bone doesn't seem to impact soft tissue, it would seem logical to me that the dog is not aware of it in the same way that he is aware of an incision or other damage.

Too bad I don't know if he can sniff out a tumor...

Dr. Doggy is really falling down on the job here. I guess I have to wait for the CT Scan and human doctors.

Mathematical Unknown

2022-05-19T17:30:00.017-04:00

Math is a framework by which we can define an unknown item. The various processes used therein have been derived from and tested by the laws of nature over millennia. Nature is extraordinarily organized and mathematical. Math is asking the question, “Why” and searching for an answer.

When I was in college, majoring in Applied Mathematics, I would often ask the professor, “Why….” It drove the engineering students crazy. I was regularly told to stop asking why and accept that it is.

Also, this got me into trouble when I was growing up. If I couldn’t understand and I asked, “Why”, there were many “Because I said so” or “Because that’s the way it is” answers.

Early in my career, another engineer was teaching me the finer points of Radio Frequency. As we walked in to one learning session, he started out with, “I’m going to show you this. Don’t ask me ‘why’. I don’t know ‘why’. Just accept it.” That was a little difficult for me but I appreciate that he was up front. (The need to know “why” eventually drove me to grad school.)

My brain begs for the “Why” - the definition for an unknown.

So, people who know me well are questioning how overwhelmed I am with this whole “part of your bone is missing” thing. Where am I at emotionally?

When I get a new dump of information, it can be very overwhelming. During yesterday’s appointment, I was struggling to keep up with where we were at and next steps. The doctor left the room for a few minutes and my friend untangled it for me. So, by the time he came back, I could ask relevant questions. A couple times, they just had a conversation and I listened in. That helped me.

The “why” is still under investigation and the timeframe for resolution is yet unknown. That is insufficient definition for my brain. So, yes, it can be overwhelming.

One of my friends says, “Focus on God. Glance at my problems.” This is a succinct statement of the framework (cf May 14 post) that really works for keeping me from feeling overwhelmed.

When I look at the problem, there is little I can control. To focus on that will ramp up anxiety. Antithetically, Philippians 4 says to intentionally choose to focus on other things to prevent anxiety.

I can control is whether I am ready for potential next steps:

Is surgery possible? Yes.
What would prepare me for that? How about ready-made meals in the freezer for when it is hard to stand for long periods? Yes, I can do that now.
Rides for if I cannot drive? Keep a list of the people who have offered.
If surgery happens in the next 3 months? Make sure that the graduation and birthday cards needed are already on hand, the yard and house chores are covered, and the dog has sufficient playmates.

Those are all things I can do to take control and prepare. The unknown can stay on the periphery.

Over all of this, continue to spend time reading the Word and covering in prayer. Focus on God, glance at the problem.

Over time, the “why” will become known; the human based investigation will complete. Let’s be real here, none of this is a surprise to God and He already knows the “why”. Staying focused on the One who already knows the answer is key to the investigation.

I once read, in a graduate mathematics textbook, a concept that I have dwelled on many times over many years. I no longer have the exact wording from that book so I am paraphrasing here: understanding the mathematical infinite (figuring out large scale unknowns) requires pursuit of the Infinite, with the implication being that pursuing the “Infinite” meant to pursue the One who created the order and natural laws within which we function.

Journeying on Foot

2022-05-18T16:59:00.002-04:00

Today was the post-MRI follow-up with my podiatrist.

As I've mentioned to some people who have asked, I have great confidence in this doctor's recommendations. Here's why... In the time since my last visit, he has consulted multiple other doctors, pulled out his medical books to study, and surfed online journals and research, in addition to the MRI. He is willing to admit when a situation is new and always looking to learn and become better at his craft. And he keeps his patient always in mind.

The next step is a CT scan. Beyond that, my doctor is not completely certain so he is referring me to another doctor that has more knowledge in unusual cases. (What?! You don't find disappearing bones unusual? Pshaw!)

Added to the list of possible causes from the last post is the possibility that the blood vessel feeding that bone was damaged, causing a lack of blood flow and death of that part of the bone. Very oddly, someone made a comment to me last night about the possibility of the bone dying.

Answers to questions that I've been asked:

Is this caused by my Rheumatoid Arthritis (RA)? Could be a contributor but usually the signature is different in that the damage from RA typically appears on a different side of the bone.
Does the right foot need to be checked to see if both are affected? No.

The friend that went with me helped me sort out what was being said, asked questions, and prayed with me, for which I am most grateful.

Mack has been a little extra snuggly today. It's either because I am a little off (still need to really process the new info) or because the weather is cold and rainy. Probably some of each. He's a pretty good little unofficial therapy dog. Cute dog pictures are obligatory of you are mentioning a cute dog.

So, we journey on.

What's in a Foot?

2022-05-14T13:10:00.002-04:00

Remembering to update everyone who asks to be informed is hard for me. So, resurrecting my blog to keep everyone updated on this journey. Here we go...

When my podiatrist discovered that the head of the one bone is missing in my foot, he said that it was not an acute break. He was certain that it is occurring over time. He wanted to check for bone tumor, bone infection, or whatever else.

The MRI was Thursday evening. What I didn't know was that my insurance needed to approve the procedure before I could have it. I found this out when they called me at 6:30 PM to say that "the procedure your doctor ordered has been approved". Well, that is good since it is in an hour and a half! God brought that in right in the nick of time and now I know to watch for it in the future. A friend went with me and prayed over the procedure that it would reveal to the doctor the things he needs to know.

Several people have reached out for a status post MRI.

To start off, I completely forgot how palpable radio waves can be at close range to the transmitter. This is what I was thinking about during the MRI. My foot was encased in a special boot and the electromagnetic energy was primarily focused within the boot. Back when I used to visit rooftop cell sites and mountaintop sites where higher powered antennas might be collocated, I have felt the radio energy. Many memories flitted through my mind. As I periodically speak to teen girls on radio waves, I can add a new dimension to my discussion when MRI is mentioned.

I received the MRI report on Friday afternoon. I am not a doctor and have no medical training. I am not a fan of the unknown and I live in an age where I can easily access definitions. Good analysis happens when evidence can be followed to a natural conclusion so no pre-determined conclusions are allowed. However, I am also a person who needs time to think and collaborate in order to get questions together so some research is necessary.

So, I looked up the words in the report that I didn't know and I am sure that my very capable doctor will give me a better read out on Wednesday.

Based on my limited knowledge, my understanding is that the MRI may show that there is something causing the bone loss over time. Trauma to the location, a tumor, or infection are among the potential causes. This is in line with the initial suspicions of my doctor. The doctor who wrote the MRI report indicated that a CT scan may be needed. We'll see what my doctor says when I see him.

I am not worried about the outcome but I like to be prepared.

I am compiling questions. You are free to contribute to the list. I also pulled some recommended questions off of a Mayo Clinic article.

While I don't currently feel inclined to do much research on local oncologists, I have asked for some advice, in the event that such a referral is needed.

Mayo Clinic says that infectious disease and orthopedic are the likely specialists needed for bone infection. I do feel very inclined to research infectious disease doctors in the area. Recommendations for or against individuals is welcome.

I can't really explain why I have an inclination to research the one more than the other right now. It just is.

Several people have mentioned that they think I am compartmentalizing. I will honestly say that I am not. I definitely have the female brain that considers all issues concurrently… and the boot keeps me very aware of this particular problem. But I do create a framework for managing any situation to keep me from being overwhelmed by the unknown.

I always told my son that handling a crisis is 3 steps, repeated as needed: pray, develop a plan, execute the plan. So in this situation, prayer is over all, the plan is under development and will be rooted in the recommendations of my doctor, and some items will execute while others are still being determined.

Last week I was reading in 1 Kings. There was a king, I forget which one, where the author pointed out that he put his faith solely in human physicians. It was just a statement but it seemed pointed. Yesterday I was reading 2 Kings 1. Ahaziah did not recover his injury because he reached for a false god. I want to be very intentional to be seeking the true God through every step, knowing that He will utilize the expertise of the medical professionals to accomplish His purposes in this. I greatly appreciate all who are praying with me. I used to know someone who would say, "Prayer is the most important thing." That is true.

From the messages I have received, I am aware that many are worried. When you begin to worry about this situation, please meditate on Matthew 6:25-34.

Pray for my doctor to have the wisdom for the next step. Pray for myself and my friend who is attending the next appointment to know what questions to ask. Thank you!

Make it a Great Day

2021-08-10T19:00:00.001-04:00

"You are a silver-lining person. I just know it. Your 'Out of Office' says 'Make it a Great Day'." This is what a coworker recently told me.

In the first part of my sixth grade year, I attended a school where the morning announcements ended, without fail, with the phrase "Make it a Great Day". The explained premise is that what makes a day "bad", "good", or "great" is how a person chooses to respond to the circumstances that arise.

This learning came at a time when I had very little control over the things that occurred in my life. The little bit of wisdom communicated was that I could take control over at least my attitude.

Over the course of time (ahem, years), I began to intentionally allow or create the thought processes around "What [actions/goal] will make a more desireable outcome?" and then proceeded to analyze the situation. Over time and experience, I learned to look from multiple angles.

Thinking about my Middle School/High School journey, this mindset surely saved me from more mental health issues than the severe anxiety that I kept buried for many years.

When I became a parent, I had to learn greater flexibility so the question changed to "What actions will allow forward movement; is the goal still the right direction; and is my way the only way or is there another viable path to achievement?"

One item that took me years to grasp is that sometimes taking control of the situation means not controlling the process, if I want both control of my life and peace in living it.

However it is framed, the purpose of the question remains the same - take control of any little piece of life possible in order to avoid living in victim mentality. I didn't know it in the sixth grade but I've since discovered that the Bible instructs us to take control of our thought processes to reduce/remove anxiety and experience peace. Philippians 4:4-9.

I am forever grateful to the educators who took the time to teach us to choose our thought processes. I'm really not so much a "silver-lining" person as a "fortitude or pivot in the face of difficulty" person.

Make it a Great Day.

Managing

2020-05-05T19:15:00.002-04:00

As states are beginning to make plans for reoopening the economy, I have seen the argument that it is too soon to do so because people with autoimmune and other underlying health issues or who are of senior age will be at more risk.

As I've discussed on this blog in the past, I am one of those with an autoimmune disease. Prior to this whole Covid-19 situation, I was responsible for managing my own autoimmune. Over the years, I have talked with others who have autoimmunes and have learned that they actively make modifications to manage their own health, as well.

Germs that would not really impact someone with a healthy immune system can be a greater risk for us.

Before C19, I often missed karate class, church, and social events because it was necessary to manage my health. On busy weeks, I build a recovery day or two in to my calendar. I take supplements to boost my immune system and scrub my grocery cart in an effort to avoid the transfer of germs that could land me on the couch for weeks. I've been known to decline a handshake in the interest of my health. I also talk to my doctors, who have made it very clear that they can advise me based on their expertise but that I am the one responsible for acting on that information.

With the understanding that C19 can hang in the air in an enclosed space, I now shop during off peak hours (midday during the week) whenever possible. I wear a mask when I enter a retail establishment, not because I think a dust mask protects me much but because it will do more than nothing.

A few years ago, I attended a week long youth program where we were told that, in the interest of communicating realistic understanding, some of the activities would be "safety third". The idea that perceived physical safety should be paramount has also been a facet of my thoughts. [Mike Rowe addresses the "Safety Third" concept more eloquently than I ever could on one of his recent podcasts. If you are not familiar with the term, I encourage you to listen.]

Until recently, I have always been expected to manage my own health and calculate the risks for my own safety without asking anyone to close down their businesses or avoid their own activities.

Because of the fear of Covid-19, I now see/hear people saying that the government should tell me what is needed for the management of my health. That is, we should not reopen the economy because of my health.

No one has ever shut down business or avoided work to manage my health before the recent events. For the record, I do not expect anyone to forgo their economic pursuits to help me manage what I have managed for years.

No More Meds!

2017-02-10T13:54:00.000-05:00

As part of managing my autoimmune over the last 18 months, my diet has drastically changed. With that change and the resulting elimination of pain, I have been able to quit taking all of the medication that was prescribed for chronic illness. Yea!

I called my pharmacy to find out how to dispose of the medication and was told that sometimes the county health department has drug take back days.

So, I looked up the county health department. After wading through broken links and presentation decks that got me nowhere, I finally found what I needed.

I gathered up all of my medication and dropped it off at a local Yellow Jug location. If you have old medication sitting around, here are resources to dispose of it safely.

Great Lakes Area:

http://www.greatlakes-us-cleanwater.org/yellow-jug-old-drugs/

National:

http://disposemymeds.org/

https://www.deadiversion.usdoj.gov/drug_disposal/takeback/

Sources:

http://hd.ingham.org/Portals/HD/Home/Documents/eh/Substance%20Prevention/PrescDrugDisposalReferences.pdf

http://www.michigan.gov/documents/deq/deq-ess-cau-RXbrochure_279298_7.pdf

Living at Peace

2016-04-18T23:54:00.002-04:00


This picture of the bridal veil falls at Niagra, taken on a family vacation, helps me keep relationships in focus. A relationship can be like water peacefully rolling along until it falls off a cliff and bashes around on some rocks, settling back in to peace as the mist clears.

I hate conflict. I have always hated conflict. For me, the fastest way to high stress is conflict. I’m not kidding. I spent weeks preparing for a presentation and had dramatically less anxiety and stress than what is created with one disapproval from or disagreement with another person.

Someone who is reading this is thinking, “Um, but you create conflict.” Yes. Sometimes, that is true. Sometimes I create conflict just because I am a sinful jerk who doesn’t handle situations very well and sometimes I create conflict because doing so will lead to peace.

I remember some times when I was a teenager where two people would be arguing. The arguing would not stop because neither person could walk away without having the last word. When my anxiety reached a certain point, I would say something which would lead both parties to yell at me, and then the argument would cease. It became a tactic for me. I didn’t want the anxiety so as soon as it became apparent that the argument would become an unceasing loop, I would step in and take the verbal lashing, just to make it stop.

I had a recurring dream about being in a war zone. Specifically, I was on the front lines during a war and I was always looking for cover. Usually one side was using tanks and the other was using bow-and-arrow. Sometimes I would get to see this dream in various versions for most of a “full night” sleep.

When I left for college, that dream stopped. I wondered about that for many years. A counselor (aka therapist) eventually told me that it stopped because I was removed from the conflict.

Somewhere in the last 20 years of life, I read this passage: Romans 12. The discussion is largely how to live in relationship with other people. In particular, verses 9 on to the end of the chapter got my attention, with verse 18 being the standout.

“If possible, so far as it depends on you, be at peace with all men.” (Romans 12:18 NASB)

This has really become one of the thoughts that drives how I think about structuring life. Through much Bible reading; a mess of trial and error; and much hurt, I have come to these conclusions:

It’s not really peace if a relationship appears to be peaceful on the outside but one party has an unspoken issue with the other.
Sometimes conflict is required to clear up whatever is in the way between two individuals.
I am responsible for promoting peace only as it is in my power. If I have been lovingly truthful with another person, I am not responsible for that person’s response. If I have lovingly tried to clear the air, I have done what is in my power to promote peace.

After reading on trauma, taking parenting classes, reading about parenting well, and basically failing on having peace in my house, I came to the conclusion that I was not doing everything in my power to promote peace.

I started praying. My prayers were situation specific and went like this one, “Ok, God, I do not want the arguing about getting up in time for the school bus every single morning. How do I promote peace?” So, we went shopping for an alarm clock and I didn’t do any more of the waking up. If a kid sleeps through an alarm and misses the bus, his two healthy feet will carry him the 1-2 miles (depending on where we lived) that it would take him to get there. Make sure you’re not late because I am not excusing the tardy.

The first couple times that the alarm was slept through, I had peace because everyone knew the expectation. I may have been yelled at but because everyone knew the expectation, I could hold on to that structure and respond with, “Make wise choices today. I know you need to head out. I need to get ready for work.” My work was not compromised which kept peace in my day and my kid got the benefit of exercise while learning independence skills.

That worked so well that I tried it on other conflicts, both at home and outside of home, looking for pragmatic solutions to promote peace in relationships. I have found a structure that works well for building peace.

Respectfully approach the person for a conversation on the problem and why, specifically, it is a problem. Have this conversation just between the two of us so that concern for embarrassment or gossip is minimized.
Own that I might be the problem. If so, ask the person for forgiveness and to kindly hold me accountable if I step in to the problem behavior.
Kindly ask for a behavior change in the other person, when needed.

I have been practicing this for many years now and I am still fairly terrified every time a situation comes up where I have to confront someone. I typically wait longer than I should to have the conversation and my insides shake like maracas during a rumba. So far the conversation has never been anything close to as horrible as I work it up in my head. I have never lost a friend-worth-having over it. There have definitely been times where someone was angry that I brought it up or needed space and time to process the conversation but somehow that always seems to get resolved. Actually, the relationship is usually better because of it.

I have, however, lost more friends than I wish over not pursuing peace. It is a great sadness for me that those relationships are lost.

This journey and the place it has me in now have been on my mind a lot lately. I have been under pressure in multiple situations to abandon forthright honesty and to lower or change expectations and structure. When the pressure comes, my anxiety ramps up. When I evaluate whether to give in, my mind always goes back to the statement, “so far as it depends on you, be at peace with all people”. I think about the structure that requires each party to take responsibility for his or her own actions and whether I have allowed the space for that to happen.

In the situations lately, most of the time I am holding on to the structure and, despite irritation or disagreement from the other party, I find that I am at peace. There is one where I struggle to allow the space for another to step up to responsibility. And God has graciously placed in my life someone who is willing to call me out… as often as needed… to bring about peace.

Changing the Cycle of Domestic Abuse

2016-04-13T19:11:00.001-04:00

Here is a paradox that I have recently noticed. (Please not that I am not an expert. I am an observer.)

The American culture makes a big deal of telling women to get out of domestic abuse situations and decries cultural structures that allow women to be abused in other countries. Culture says that abusers should be held responsible for their actions and the abused need a safe place.

However, on an individual level in America, women are regularly told to let themselves back into the situation with the abuser. The abused woman is told, “He’s changed. In the [2,4,6,…] months that you’ve been away, he has been kind and considerate. You should give him another chance.”

My observation in interacting with and learning the stories of foster and adopted children is that abusers don’t change on their own. I haven’t seen or experienced it to be any different for those who are abusing adults.

If a victim lets an abuser back in after such a short time, she is set up for more trauma. It is very sad to hear a person encourage a woman to put herself back in the cycle.

Perhaps the encouragement is made because the encourager does not understand what the cycle of abuse looks like. This picture is a simplified version of what I have observed.

Instead of trying to encourage or guilt an abused person to let the abuser back in to her life, I propose another course of action.

Acknowledge that it took guts and strength to step out of the situation to begin with even though it might mean some difficult financial or legal times. Be a shoulder she can cry on.
Encourage the abused to find professional mental health support and healing. This might be a difficult or nerve-wracking endeavor so step up and help. Offer the moral support of sitting in the waiting area or babysitting the kid(s) so she can get this help.
Encourage a change in how the abused might approach future relationships so that the cycle is not repeated. (One approach to this is given below.)
Assist but set clear boundaries. Often someone who has experienced abuse feels like she is in continual crisis and that can spill over on to you. Be clear in how you are willing to help. Do not be manipulated into helping when you should not just because you feel bad about her situation. For example: “I can help by babysitting on Tuesday evening but not the rest of the week.” or “I can research which therapists take your insurance while you focus on finding a job. I will make you a list and then you can call and take it from there.”
Set boundaries in your speech. If you are still friends with or have interaction with the abuser, do not share information on the life of the abused with the abuser. “I choose not to give you that information.” is an excellent response to pressure from the abuser. Stand by your choice. Likewise, do not share information on the life of the abuser with the abused (unless it is necessary for her safety). But also do not abruptly change a conversation because she suddenly entered the group. Hearing the daily details of the life of someone who has violated trust can raise anxiety and fear. Looking at the abused person awkwardly or cutting off a conversation abruptly in a group gathering because she walked up communicates that there is cause for concern or that you are not willing to be honest with her. Be honest. Finish your sentence and find a way to change the subject, knowing that, sometimes, graceful transitions just won’t happen.

Regarding #4 above, I have noticed that women often get in to abusive relationship after abusive relationship because they do not know how a man who will treat them well would behave. Several years ago someone gave me this challenge: Women - read the entire Biblical book of Proverbs with a focus on how it says a man should behave; Men - read the entire Biblical book of Proverbs with a focus on how it says a woman should behave. Make a list. These are the characteristics you should look for in a spouse. Then go back and read it again with the opposite focus: Men - read the entire Biblical book of Proverbs with a focus on how it says a man should behave; Women - read the entire Biblical book of Proverbs with a focus on how it says a woman should behave. Make a list. These are the characteristics you should be emulating for a healthy relationship. (If you don’t have access to a Bible, you can access an online copy here for free.)

I took the challenge. It changed the way I consider which people get to be in close relationship with me. It also gave me a concrete set of expectations to use in setting healthy boundaries in any relationship. (Cloud & Townsend’s book Boundaries was an excellent assist in this.)

Are there ever times when a person legitimately changes and a renewed relationship could actually be healthy? Absolutely, Jesus can change people from the inside out. But give the interaction significant time to prove the change and do not assume that your experience with the former abuser is the same as the formerly abused’s interaction with him.

Practice and encourage wise and responsible decision making. Don’t be the paradox.