Recovering From A Family Visit

Hello again. It’s been a couple of weeks since I last posted. Hubby and I enjoyed hosting family the past couple of weeks. The last one went home early this past Saturday afternoon. I have been so tired since that, outside of going to see my Dad for Father’s Day and attending church Sunday morning, I’ve not left the house. I thought about writing yesterday but thoughts were slow to come. The blank screen just stared back at me no matter how long I stared at it.

My brain feels a bit less hazy today. I decided to try and lube the wheels with a few purposeful thoughts to scatter the entrenched cogfog.

The MS monster roared and paced around the perimeter the whole time we had company. Thankfully though, it waited to pounce and begin devouring me alive until the last couple of days of the visit. I’m actually fairly proud it took that long because it means I paced myself for a whole two weeks🥳.

Anyway, this short post proves I’m still alive and kicking. I hope to be able to write again someday soon, I’ve missed it.

Godspeed,

Amy

Not Your Average Monday

It’s a BIG day at our house! One we’ve been thinking about since we bought this place 11 years ago and realized our shower in the master bath was very much like a coffin, but wetter. Well, if not like a coffin it was going to put us in one sooner rather than later. The door has fallen off twice and nearly took off Todd’s foot both times. It’s slicker than an ice rink despite no-slip treads and the step up into it has become nearly impossible for little ol’ MS me.

It’s almost like Christmas with visions dancing in our heads of a larger space made of glass and marble walls with a bench seat; a rain shower over head; a shower wand on the wall; a rail for me to hold on to; a built-in holder for soaps and shampoos; a textured, no-slip pan; and an almost zero-level entrance with a wee ramp to ride up on in my wheelchair, on my less than mobile days.

It’s just like Christmas in another way, too. In order to have the perfect, Norman Rockwell, jaw-dropping, memory making Christmas, someone has to invite, organize, clean, set-up, decorate, bake, cook, shop, wrap, host… themselves into a frenzied, anxiety-laden state before the festivities begin.

Well, that was us yesterday. Oh, man, we had to work hard! Every single thing from the master bathroom AND closet (which is part of the bathroom) had to come out. Several years ago we used to clean the house ourselves, but for the past seven or eight years we have had a housekeeper. But now that I’ve recently (as in a week ago) become a full-time, stay-at-home cat mom, we’ve reclaimed cleaning duties. We decided this was a good way to save a little cash now that I’m fully retired. I quickly realized two things as a result of this decision. 1) When you have other people clean your house you don’t really get a feel for how much stuff you have. My theory is it’s because you don’t have to touch things in order to dust or move them around to vacuum or mop. As a result, it makes it easier to accumulate stuff without clearing out old stuff. 2) It’s a lot of work to clean a house properly!

First, the closet. There we were, Todd trying to watch his toes and me being a menace on my scooter. Back and forth we went, each of us hauling load after load of clothes, shoes, bed linens, towels, travel accessories, and all the overflow soaps, shampoos, toothpastes, lotions, etc. to……..to where?!? We ditched stuff in every closet and corner we could find. We’ll probably never find half of it when we’re done.

As we went, we decided to thin the herd. There were a lot of things that didn’t “spark joy”. To be exact, we ended up with four 30 gallon bags of clothes and two 30 gallon bags of household items to be donated, as well as two 30 gallon bags of trash, and two 30 gallon bags of recycling. Marie Kondo would have been proud.

Actually, the bags of stuff to be donated, trashed, and recycled included things from the bathroom, too. Most of the bathroom stuff went in the trash. Note to self, check your medicine drawer more often. For example, we apparently moved into this house in 2007 with a bottle of Benadryl that had expired in July of 2005.

The shower and adjoining wall took their last few breaths, as time stamped by the clock on the wall, at 8:00 this morning. By noon this is all that was left.

It’s going to be 2-3 weeks before the new shower is finished. I’ll post some updates as we go. Meanwhile, if you need us, just look for the couple covered in and smelling of sawdust and sheet rock.

Part 2: It Takes Both Rain and Sunshine To Make a Rainbow

In part 1 of this two-part post I told you the essential story of my Multiple Sclerosis to date or, if you will, the daily “rain” in my life. Now, if I stopped there all I could ever expect would be perpetual, devastating floods that would eventually drown the whole of me into an ocean of hopelessness. But, to the praise of His glory, this is not where things end!

God has created each of us to be more than just simple, physical creatures satisfied by nothing more than the air we breath and the food and water we intake. He has created us in His image and in doing so we reflect, albeit to a much more limited and imperfect degree, His palette of emotions as well as a spirit which will live on once we leave this life. Therefore, all of us have emotions which, when properly trained, can transcend the physical realities of our circumstances. We also have a spirit within us that longs for something, someone greater than ourselves. Our spirits cry out to be restored to fellowship with our Creator; wanting and needing to rise above the physical needs of our bodies. My spirit found the one, true, living God when I was 13 years old and from that moment on faith in God and Christ, His Son, has filled and overflowed my life with joy.

I don’t have complete control over how my MS affects my body nor the vicissitudes from day to day of what it will or will not let me do. However, I do have control over how I allow my emotions and my faith to run my life. Psalms 19:9 says, “The fear of the Lord is pure, enduring forever”. Did you know that “the fear of the Lord” is an Old Testament expression meaning “reverential trust”? Yes, once we realize Who God is and His holiness, we will fear Him because we realize who we are. We are not holy and knowing Him reveals our sinfulness. That is why Proverbs 9:10 tells us that “the knowledge of the Holy One is understanding”, it reveals our need. But once we yield to Him and become His by putting on Christ His Son through baptism, our faith is based upon a reverential trust in God to keep His promises. Once we have trusted in who He says He is and the promises He has made, we go the next logical step by submitting to Him. The most beautiful and wonderful example of this submission is by our Lord and Savior, Jesus Christ. Of Him it is said, “Sacrifice and offering you did not desire, but a body You prepared for Me; with burnt offerings and sin offerings you were not pleased. Then I said, “Here I am – it is written about Me in the scroll – I have come to do Your will, O God” (He 10:5-6). Further, the Hebrew writer describes the moment when the time of Christ’s passion came. Hebrews 5:7-9, “During the days of Jesus’ life on earth, He offered up prayers and petitions with loud cries and tears to the One Who could save Him from death, and He was heard because of His reverent submission. Although He was a son, He learned obedience from what He suffered and, once made perfect, He became the source of eternal salvation for all who obey Him.”

Of course Jesus trusted God, He had just been in heaven with Him and had left Him to come here. But look what that trust enabled Jesus to do! He reverently submitted. And so, that is what I will do. I will live each and every day trying my best to reverently trust and submit to God my Father.

Trusting and submitting to God has benefits that far outweigh my physical limitations. He offers the “fruit” or “gift” of His Spirit, which Galatians 5:22-23 lists as, “love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control.” The Holy Spirit has been given to us as our “Helper” or “Counselor” (John 14:16) and His “fruit” or “gift” has everything to do with how to manage my emotions when living with this disability. These are how I will stay emotionally strong through whatever MS or life throws my way. I will love the things MS has taught me. I will find joy in the things I can still do. I will find peace in the knowledge that God understands my limitations. I will practice kindness and goodness because others may be experiencing greater problems than I am. I will be thankful for God’s steadfast faithfulness to me and pledge to show mine to Him out of gratitude and because there may be others who would be encouraged by my example. I will let his gentleness toward me influence my thoughts, feelings, and actions toward others. I will allow all the other components of this great Spirit given gift to learn and practice self-control.

God is the sunshine mentioned in the title. The rain of our broken lives mingled with the sunshine (or Sonshine 😉) creates the most beautiful of rainbows. After all, what was a rainbow given as a reminder of in the first place (Genesis 9:16)? A promise!

Part 1: It Takes Both Rain and Sunshine to Make a Rainbow

I’ve struggled with how to write this. I have attempted it now for two days on several occasions but the words just weren’t there. I’ve had 2 persistent questions I can trace the first origins of to the fall of 2001. Although I’d had three full blown flair-ups of my MS over the previous 11 years after my diagnosis, all the symptoms disappeared after the relapses and I couldn’t tell any discernible difference physically between before and after they took place. But 2001 marked a change. After the dust from my relapse that year had settled, I noticed I fatigued more easily and quickly than usual (the number 1 symptom of most MSers). I also began to have some issues with my bladder (also a highly common symptom) and my coordination was just not like it had been before. That’s when the seeds of “What’s going to happen to me in the future?” and “Am I going to have to stop working?” first started stewing in my mind.

Well, from 2001 onward to the present time, I have had 1-2 exacerbations a year with the exception of 2007 and last year, 2018. My symptoms have been typical for MS and, with regard to walking, the following have come, gone, and some have stayed: poor balance and coordination, muscle cramps related to too much muscle tone in my calves and thighs, tingling, heaviness in my legs, the feeling of pins and needles in my legs and feet, total numbness making it nearly impossible to know if I have moved my legs, and a total inability to walk at all. Other parts of my body have been affected, too. I’ve had numbness, the feeling of pins and needles, tingling, and heaviness in my arms, face, and torso as well as problems with dizziness, coordination, bladder and bowel dysfunction, and word finding problems. But worse than all of these has been the fatigue related to MS. The fatigue is unique and is caused by all the damage done along the nerve tract over the years to the myelin, or coating that wraps the nerves to help the signal move along quickly, just like the insulation around a wire that carries electricity. When myelin is destroyed, the signal from the brain to the different parts of the body can’t get through very well, or sometimes at all. Your body has to work extra hard to make the signal get to the parts of your body that have been affected. All this extra work requires energy. Your nervous system can’t work without electrical impulses so it will use however much energy it needs to get the job done. Of course, no one has a limitless well of energy. Therefore, when the majority of your energy store is being used up just to communicate signals in your body necessary to function, it leaves a very shallow pool from which to draw from to do everything else.

It’s very hard to describe the fatigue of MS. It doesn’t have anything to do with how much sleep I get or how much I rest during the day. Sometimes I wake up after a good night’s sleep and, first thing in the day, the fatigue is so great I can hardly hold my head up and I can feel the energy ebbing away just by blinking my eyes. Other days I wake up and seem to have energy to walk and go about my activities but then, WHAM! In a matter of seconds fatigue hits and I have to stop immediately and rest for hours in order to recover enough energy just to sit up again or to walk across the room.

Over the course of my professional years working as a speech language pathologist (SLP), I have had to make accommodations for my MS in order to continue doing my job. First, I had to stop working with little kids because they just required too much energy and would wear me out quickly. Next, I had to stop travelling so much while working in a private practice because driving made me tired. This was followed by having to change jobs to one where I didn’t have to travel at all, then I started using a scooter at work, twice I had to reduce my hours, and finally I took medical retirement 2 1/2 years ago . Since then, I have worked at a local university 2, six hour days per week, in the fall and spring semesters, supervising graduate students in the clinic as they learned how to do therapy.

I just resigned my position at the university this past Friday. I had been struggling with another down turn of my MS since October, 2018 which ultimately culminated in a full-blown exacerbation mid-January, forcing me to miss the first two weeks of the semester as I took and then recovered from huge doses of IV steroids. I returned to work 2 weeks ago but I knew pretty quickly the last hurrah had come. The energy required to get dressed and ready to go, drive, walk in the building, meet with my students, observe their sessions, edit their documentation, get back to my car, and drive home left me absolutely bankrupt of energy. The other 5 days of the week when I wasn’t working had to be spent trying to recoup enough energy to make it back to do 2 more days the next week. I could barely walk independently, get in and out of the bath/shower safely on my own, make it to the toilet… and my other symptoms, such as poor balance, clumsiness, word finding issues, et cetra were worsening.

So, within the space of just a few months, both of the questions I started wondering about way back in 2001 have finally found an answer. As I’ve mentioned in another post, my neurologist and I think I’ve walked to the edge of Relapsing Remitting MS and am staring at the prospect of Secondary Progressive MS a lot more closely than what feels comfortable. I guess that answers the question of what my future is going to look like. I’m so thankful it’s taken 29 years for that answer to come. The 2nd question came to it’s ultimate, final answer Friday.

It’s hard, but not unexpected. I’m sad, but not devastated. I’m still trying to get my head wrapped around it all.

But this is not the end of everything and it isn’t the end of my fight with MS. I’m still alive and I’ll lay out my battle plans in the next installment of this 2 part story.

To the praise of His glory,

Amy

And Now I will Show You the Most Excellent Way

I’m not quite sure what I was expecting when I signed up on Match.com 13+ years ago. I had really just signed up on a whim and didn’t have much confidence anything would come of it. I never imagined that within one month of joining I would find my one, true love and be married to him four months later. God really does work in mysterious ways!

From the very first email through to our first phone call and then to our first time meeting, Todd and I just knew. We celebrated our lucky 13th anniversary this past December and I’m still amazed at how everything in life just keeps getting better and better simply because I’m sharing it with him.

Because I hadn’t really dated much and hadn’t had any real relationship experience before I met Todd, I had a lot to learn. I hadn’t had very many good examples of love in action growing up. My parents had a messy, ugly, no-love-lost divorce when I was young. My maternal grandparents, though they remained married, barely hid their contempt for each other. My paternal grandfather died in a car accident when I was 14 months old so I never had the chance to see their lovely marriage. Half or more of my parents’ friends were either already divorced or going through one, it was the 1970s after all. I heard people say they loved their spouse, but I didn’t see much of it displayed.

In both big ways and small, Todd started showing me right away that love is more than just words, it is comprised of many small, daily actions. Little things, like always keeping my car filled with gas, dropping whatever he is doing to make an emergency run to the store when I run out of an ingredient mid-baking, taking over all the laundry duties because he knows I don’t particularly enjoy doing that chore, always doing the dishes after I cook…the list could go on and on. He doesn’t keep track of the things I do for him compared to the things he does for me. He just does things for me because he knows it makes me happy, there is no scoreboard. Naturally, this has translated into me loving to do things for him. Daily gestures of love and kindness help keep love soft. (“Love is kind.” I Co 13:4)

Of course, like all couples, we have disagreements and/or we inadvertently hurt each other’s feelings on occasion. I saw a lot of arguing growing up and little care when feelings were hurt. I never once heard “I’m sorry” or “It’s my fault, please forgive me” after the fact. No one reaffirmed love afterward, either. What I did see was a lot of withholding, grudges, and games played against each other. However, Todd always, always, always apologizes and says he loves me after an argument or when he sees my feelings have been hurt. He always kisses me and with sincerity says he loves me. He does this no matter what and usually within a minute or two of the occurrence. Well, such gentleness and humbleness of heart is impossible to ignore. I have learned to do the same with him and believe this is one of the most important components of feeling safe and being able to forgive and move forward in love together. (“Love is not rude…it is not self-seeking…it keeps no record of wrongs.” I Co 13:5)

Traditional wedding vows include that you promise to “have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part.” Or, in other words, no matter what happens in life. On our first date I told Todd that I had Multiple Sclerosis. And, I’ll grant you, he didn’t know much about the disease other than it’s not something anyone wants to get. But I will never forget what he said to me, “It’s just one more thing I can learn to love about you.” Seriously, that set the tone for each and every day since. He meant it. My MS has slowly progressed over time since we married. The “in sickness and in health” part of our vows has been a truism. I took early retirement 3 years ago due to my MS, I rely on him to push me in my wheelchair 60-70% of the time when we go out, he has to help me get in and out of the bathtub half of the time, he cleans up my messes because I am so clumsy, and has had to take on many other daily chores around the house that I either can’t do at all or need help doing. As you can imagine, losing the ability to take care of your own needs is a difficult process that is upsetting. He has loved me through my tears, helped me keep perspective, and is my number one source of encouragement. Every single time he says the same thing to me, “It is my pleasure.” I told him the other night that he makes me feel safe. He had the sweetest smile when he turned in response and said, “Good, then I’m doing my job. That’s my goal. You are safe.” (“Love always protects…always perseveres.” I Co 13:6)

The apostle Paul said, in I Corinthians 13:8, that “love never fails”. Indeed, it is the “most excellent way” (I Co 12:31)

Beginner’s Guide to Becoming a Crazy Cat Person

Come on, you know you want to! Let your inner ROAR come yowling out!!

  1. Get enough meowvelous clothes to cover all the seasons and to wear one every day of the week.

2. Don’t forget the Purrfect accessories.

3. Snuggle in with snazzy, P-awsome jammies.

4. Lots and lots of drinking vessels, and I’m not kitten.

5. Pawsatively beautiful art –  both LARGE…

…and small.

6. Plenty of toys to keep your kitties feline fine.

7. Customized furniture

8. And last but not least, you will need to get professional photographs taken with your cats at least once in your life. These oldies but goodies are from 1998!    ðŸ˜¹ ðŸ˜¹  

The Ocean

In mid to late summer of last year my MS took another noticeable swing at me that affected my day to day life. Over the years it had already made itself obvious daily, but it decided to add a bit more heft to it’s punch. I’ve always described my experience with MS as a battle because I have to war against it so the only thing it can take from me are physical abilities, not my mental toughness, joy, peace, or purpose. Each time it strikes and takes a physical toll I go through another war within. I wrote the following in late October last year and decided to share an edited version of it here. Everyone wars with something. Maybe you can relate and this will give you the same hope it gave me.

The past few months I’ve thought a lot about how small my life felt it was becoming as a result of not having the energy to get out and do things on my own much. I struggled to find a peace about it but it was elusive. If social media was to be believed, everyone else in the world was busy doing fun things and living relatively large lives compared to mine. It left me feeling that life was passing me by and I was a passive observer rather than an active participant in it. I have prayed a lot about this and the widening void of frustration that inevitably comes over the course of living with, what has been for me, a slow progression of disability from M.S. these past 29 years. The answer came slowly and in pieces but did ultimately reach a watershed moment as I was driving one morning. My daily Bible study had been in I Peter for a few days. I kept thinking about all the things that Peter had seen, heard, and experienced over the 3 years he had spent with Jesus and how they had ultimately persuaded him to believe that He was the true Messiah. I know he had many memories that convinced him, but to me walking on the water has always seemed right up there with seeing people raised from the dead. When the apostle Matthew wrote his gospel he remembered how everyone in the boat that night had been scared upon seeing Jesus walking toward them on the water. Matthew recorded that Jesus recognized their fear and said, “Take courage! It is I. Don’t be afraid.” (Mt 14:27). Peter replied, “Lord, if it’s you, tell me to come to you on the water.” (vs 28). Jesus told him “come” and Peter “got down out of the boat, walked on the water and came toward Jesus.” (vs 29). Matthew recalled there had been a wind that night and the waves were choppy (vs 24). Peter hadn’t gotten very far before he noticed the strong wind and became “afraid” (vs 30). It was at that moment that Peter took his eyes off of Jesus and the impossibility of what he was doing hit him. Impossibility. That word jarred me when I went back to read the story. Peter was doing something that was absolutely impossible. I identified with impossible. At times it has seemed impossible to live a full life with M.S. You know the rest of the story. Peter called out and said, “Lord, save me!” (vs 30) and “Immediately Jesus reached out His hand and caught him. ‘You of little faith,’ he said, ‘why did you doubt?'” (vs 31). They climbed back into the boat and “those who were in the boat worshiped Him, saying, ‘Truly You are the Son of God.'” (vs 33). It’s all about perspective, really, isn’t it? It was stranger to Christ why Peter had taken his eyes off of Him than the fact that Peter realized he shouldn’t have been able to walk on the water in the first place!

This thought was already simmering in my mind when I heard the song Oceans by Hillsong UNITED (a contemporary Christian music group) come on in my car that morning when everything came together for me. It’s kind of a long song, but the words that got me were about how His grace abounds in the deep oceans of life, and that His sovereign hand will always guide me. I may not be able to walk when fear is all around me, but He will never leave nor fail me. When the oceans rise, I will trust Him and rest in His embrace. I am now convinced that THIS is the greatest experience of life. Going wherever He leads me, as the song says, “Where my trust is without borders; Take me deeper than my feet could ever wander; And my faith will be made stronger; In the presence of my Savior.” (Songwriters: Joel Houston / Matt Crocker / Salomon Lighthelm Oceans (Where Feet May Fail) lyrics © Songtrust Ave, Capitol Christian Music Group 2012). I immediately understood exactly how I was going to get through this. I had been thinking of myself and all the things that I couldn’t do and my eyes were focused only on me. With a lot of tears my mind cleared and I realized that if I refocused my gaze upon Christ then I would stop worrying about and thinking of the life I felt like I had lost. God’s hand is with me in these deep waters. I absolutely will drown if I try to get through this thinking about all the things I can’t do, like Peter, the impossibility of it all. This is the very moment in my life when my eyes MUST be on Jesus. He won’t leave me here to drown in this disease OR in the frustration it has brought.

I have had some pretty crummy MS days since this epiphany and you know what? I haven’t had any of those previous thoughts about life passing me by. Matter of fact, I’ve felt more loved by Him and at peace than I have in a long time. I feel like I see and feel the hand of God upon me more than ever before. I think it’s because I have never been in such deep waters in my life. Some refer to this feeling as a “mountain top” experience. It’s as if I can see much further across the valleys of life now. The view is pretty breathtaking up here and I don’t want to come down anytime too soon.

I got off of social media for a while following this experience because I realized it had played some role in my feelings.  I’m back on now, but I only check it once a day instead of, well, a lot.  I can testify that this decision has helped me keep a better perspective on life, too. 

Blessings,

Amy

A Bit About Me

If you’re looking for a Christ-centered, cat crazy, tasty eats, continuing sweet love story, daily look into trying to live with gratitude and joy, you’ll feel right at home here.

I’ve been living with Multiple Sclerosis for 30 long years. My first exacerbation started when I was 20 and, just a couple of days before I spent my 21st birthday in the hospital getting my first IV steroid infusions, I was diagnosed with Relapsing-Remitting MS (RRMS). My progression has been slow and I have fought hard for 26 years with constant use of various disease modifying drugs, but I’ve finally tottered from the edge of RRMS into the haziness of Secondary Progressive MS (SPMS).

I stay sane and grounded by recognizing my life is to be lived to the praise of His glory no matter what disease or disability this earthly tent accrues. MS can do a lot of things, but it can’t take away the joy and peace God has lavished on me through my Lord and Savior Jesus Christ. It also can’t change the fact that I am absolutely bonkers about my sweet hubby and our two adorable cornish rex cats, Laudy and Pip.

If you’ve made it this far then I like you already 💖. I read/listen to books and enjoy sharing my favorites with others, am currently learning German to keep my mind sharp, love sharing recipes for baked goodies, and figuring out how to travel with handicap accessible style to places both far and near. I took disability retirement four years ago but remain a speech language pathologist at heart.

So, come along with me on this journey! Subscribe and share, the more the merrier!!

rpt