*Last Entry; only 4 days recorded in my journal, and it remained unfinished.

Day 1 “What If”

Why do we plague ourselves with this simple phrase and question of, “What If?” It is like self-inflicted torture for me. As an overthinker, it is the worst question to ask. It immediately feels like a file cabinet that is open and facing me, inside are the file folders, all tabs each containing a different subject. You could also think of it as a ‘fork in the road.’ Imagine you are standing at a split in the road, and you try to ponder which path or direction to take. The little voice inside me today whispers, “What If?” For me, today was a day I never imagined I would face in this journey of my health crisis.

I, at almost 42 years old was told by my medical team and hospital case manager on the floor that I was on that I could not go home. I needed to go to an inpatient rehabilitation hospital to work on strengthening and learning to use my legs again. I needed 24-hour care and an intense physical therapy program before I could return home and to my family. But inside my head, I thought, “What If,” I do not get better or, “What If,” my legs can’t really be what they once were? Riddled with anxiety and trying to comprehend the unimaginable change in my health, I just felt numb. How did I go from walking independent a week ago to fully dependent on a two person assist to even stand up? And then silence.

“Ms. ________; you were accepted by the facility.”

I felt I could now breathe. And then relief. What was to come? Here comes the questions again. Damn.

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Day 2

My hand clenched the hospital bed rail so tightly. I lay on my side facing the ‘buttons,’ on the hospital bed itself. Staring at them intently and using my other hand to raise the volume of the call remote so I could try to fall asleep with the TV on. I could care less about TV when I am in the hospital. What I do care about is, is keeping the nurse a button away because the silence when you are inpatient at times can be deafening and I find I grasp at anything to be a distraction from my current reality. This is my second inpatient hospital stay in under two and a half weeks. I have shed more tears than I care to admit. I am a firm believer that holding in emotions is never a good idea and only leads to excessive worry. I suggest a bible passage. Philippians 4:6-7, ” Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” (Passage from the New International Version bible of Bible Gateway)

Apparently, God knew this, ‘anxiety,’ is something that is a health issue, that if left unmanaged can move us spiritually farther from a relationship with Him and catapults us into leaning on the world around us to cope with it.

Going on almost two weeks of seeing inside the four walls of a hospital can make even the strongest warrior take pause and try to refocus on what matters most. If you do not have your health, then you do have anything. The key is to really know yourself health wise and learn the self-care practices that only you can do to bring calm in any storm, including quick and uncertain changes to your health.

I am being gentle with myself today and although the near future seems uncertain, what is certain is that God can carry it all for you, SO SURRENDER and LET HIM.

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Day 3

My mantra today is to be gentle with myself. ‘Gentle,’ as in my inner self talk, my emotional state and how I feel processing this huge life change. While I may feel physically broken, I know deep down I am still a pillar of strength. Have I been here before? No, never. When you lack anything from your past to compare to something that you are currently dealing with, it makes it that much harder to face. After all, It’s new for you. Usually anything, ‘new,’ for me brings a lot of change with it. While I would like to think I do pretty well at rolling with the punches so to speak, somehow today I am struggling.

Today is the day I am moving on to another hospital, but this one has a specific role in my treatment. It is an intense, physical rehabilitative hospital focused on getting me moving again on all cylinders. My goal is to walk freely again, but for now I will settle with just being able to take some steps without feeling like I will fall down. Being able to feel is something I feel we all take for granted until you find part of yourself feeling numb and then you realize how much importance there is to just feel, touch and move. I wish I could be like Dorothy in the “Wizard of Oz.” and tap my heels together so I could go home. After all, truly there is no place like home or to be with those you love. I know I feel, ‘home sick,’ as they call it tonight. Grateful for modern technology these days as opposed when I was first diagnosed 12 years ago. At least I can video chat and call.

It’s going to be okay even if it feels that it isn’t. Breathe.

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Day 4

Where to begin? I wished everyone in my family a Happy Valentine’s Day although Valentine’s Day really should be celebrated every day. The “I Love You’s,” cards, flowers, and acts of kindness should be in our everyday. How wonderful the world would be? Today did not go as planned. I find not only do you have to roll with it, but there are also times you find yourself wanting to scream, cry hard and just be alone to breathe. I had group Occupational Therapy today working on our arms here at inpatient rehabilitation. The facility was great so far, and the staff was very friendly and accommodating. I even got to shower in a shower chair and really wash my hair, a first in over a week as opposed to being bathed in a hospital bed. It truly is the little things. Then upon an evaluation by the doctor overseeing me today, she wanted further testing as to why my legs were not bearing weight and that I couldn’t hardly move them well or walk. I was frustrated. I was told I had to leave this hospital and go back to the hospital I just came from for yet another work up…this time in the Emergency Room hoping to incorporate those tests into why this was happening. I felt so down. So, defeated. I was transported by ambulance. I waited three hours and then when I was seen told they do not do such testing that is being asked for and I had to be transferred to yet another hospital that did. I got so upset is putting it extremely mild. I advocated for myself and voiced the distress I was feeling. I was at the mercy of the health care system. I kept texting my family, “I just want to come home!! I was done.” So, I got transported by ambulance yet again.

Then almost 24 hour later I am finally back at the inpatient rehabilitation hospital. The last hospital was able to set up one of those tests needed as outpatient and Neuro was able to access my condition and give the doctor here the medical information needed that allowed them to finally make the decision to take me back at inpatient rehabilitation and continue my treatment for the next ten days.

What I missed was watching on video my daughter and my mom open their Valentines I hand made them. I did get to see my husband, but only in the Emergency Room when I was first transferred back long enough for him to hold my hand as the port in my chest was accessed for IV bloodwork and medication. But we did hug, and I was able to tell him how much I loved him. It was the hardest and strangest Valentine’s Day I ever had. I cried tears. I learned very well these last two weeks that learning to be completely alone isn’t always a choice you make, but one that is made for you. I had to make friends with pure silence and being alone. I am grateful I could have my phone to communicate. I am most grateful I am here. I am fighting. I am loving my family from afar. It was just a rough day. Tomorrow is new.

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“A random prayer”

Dear Jesus,

Please help guide me throughout my day; help me to give all worries and lay them at your feet. May I be mindful how I view my situation ever grateful that I am okay despite my mobility issues and that it could always be worse. That I may be patient in affliction knowing you are there guiding my steps literally and that I am not alone.

Amen.

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*Last few pictures I had recorded.

*Lastly, thank you to everyone who prayed for me, supported me, texted me, called me and so on. You were what was helping me cope with the hardest of time in my life.

“When You Can’t Go Home” (2nd week of February 2022)

We must remember when praying to God that He is not an ATM; we can’t just, ‘take,’ as in pray with our demands, rather we must make a ‘deposit,’ first. I always start a prayer with thanking God before I make any requests known to Him. Today, my prayer life felt as if my debit card pin would not work when I entered it. It read, ‘error, instead of, “Hello, God.” I couldn’t tap in, communicate or even initiate the conversation with the man upstairs. But why?

For almost two weeks straight I have seen the inside walls of a hospital as a patient and now I am too unwell and too physically unable to go home. I must accept that I am going to an inpatient rehabilitation hospital due to being a high fall risk and unable to walk or care for myself on my own due to my mobility limitations. How did I get like this in less than a week’s time?

I wish I had an answer or a reason. One thing about me is that I love the knowing of, ‘why,’ to pretty much everything except when the ‘why,’ is an answer you to do not want to hear in this case or cope with. After a tough phone call I received, I suddenly had many tears fill my eyes instead of fear settling in. I got sweaty and panic like at the warp speed of how it all seemed to me. I was told that I would be an hour away from home for a length of time that was yet to be determined. I felt broken and so very vulnerable. I utilized the hospital’s spiritual services and talked it out right away with the Chaplain, who by the way was an angel in disguise to me. He listened and before we finished talking managed to make this completely shattered woman feel whole again for a few minutes and smile.

At the moment I am writing this entry, I am still awaiting to see the neurosurgeon to find out if surgery will be necessary to treat my condition and improve my quality of life. I will let you know the outcome.

Stay tuned for Part 3, the last entry from my Covid Chronicle.

*These (Covid Chronicle) blog entries are out of my notes taken while at home, in the hospital and during my rehabilitation stay that I took down on paper at the time in my journal. The entries may read different from my usual blog entries.

January 2022

It was mid-January when Covid 19 hit my whole household and everyone in it, but my mom, with a destructive cyclone that was meant to throw even the toughest warrior, ‘me,’ off my feet. My rock bottom moment had arrived, and I said to myself that I am going to proclaim that what I was currently living in was a version of that Carrie Underwood song, “Jesus Take the Wheel.” However, that wheel needed to go turbo speed instead of drifting slowly along, that’s until my faith tested me to the max. Much like living with MS, navigating the unpredictable can make you feel broken, so what happens then if you can’t give into rest and are faced with a mountain that you can’t climb? You know, like the ‘Everest,’ of mountains? I first saw a glimmer of that mountain in November after my mom had Covid 19 and I needed to care for her and keep her isolated. I never caught Covid 19 at that time and anyone else, my family was spared. Now, we are mid-January, and I somehow found the strength to push through the second battle of it with this, ‘Everest,’ of a mountain ahead. But I laid down my so-called sword and surrendered to it all when I stopped suddenly caring for everyone and I succumbed to Covid 19 as well. As I write this entry, I am on Day 13 from testing positive and over the contagious phase, but still testing positive. This is my first and I pray the only time I will make an entry in my now, ‘Rona’ Diary as I call it.

The background of it is that I am fully vaccinated and boosted because of my Multiple Sclerosis and because I take the immunosuppressant therapy called, ‘Ocrevus,’ for it, the medication depletes certain B cells. Your B cells in of themselves are the memory making cells that are tied into your antibody response to any and all viruses and play a key role in the body’s response to vaccines. But let’s back up if you will….

I got boosted on January 10th, 8 days before Covid 19 got me. Upon my positive test in the ED, I soon went back to the ED a few days later because it caused an MS flare weakening the right side of my body along with an unbearable cough, swollen and bleeding gums (first sign I had of Covid 19) which made it hard to eat and maintain my diet. Oh, and did I mention crippling, drenching night sweats for 5 nights? But thankfully it didn’t take a hold of my lungs and the Pfizer booster I had got me past the need for staying there due to pneumonia, which thankfully I never developed. So, I went home from the ED and in those 11 days home with Covid, it got way harder. Everyone in my house had a triad of emotions, sick of the four walls in isolation and anxiety took over my daughter as she was so scared that if I got worse, I wouldn’t come home if I went to the hospital again. Those are NEVER words I want to hear again. I started to document pictures because I wanted to do just a picture album entry of my journey with Covid (I added a few of those pictures at the end of this blog entry). I wanted to capture how this virus affected me with my MS, the good, the bad and the ugly so to speak. Honestly, in all 12 years of having MS, this Covid virus was the hardest battle yet, or was it? I suddenly felt there would be more to all of this.

So, what does one do to get better?

For me, I prayed on my knees a few times; I prayed at my daughter’s bedside for Jesus to take her worries away. I rested all I could and hydrated myself trying to push through housework once out of isolation and made myself get up and down out of bed trying to keep my body mobile and strong. And I cried, oh how I cried from the emotional toll I was coping with, but along the way a newfound appreciation for my family as a whole including my mom. It was our first ever whole family viral infection situation. The beautiful in it all was that I laughed more intentionally. I played more with my daughter when I could to keep her from becoming emotionally drained from the situation we were in, and I set my mindset on being purposeful with my time. I cuddled my pup more, watched TV and movies that were only ones to make me laugh. I poured into the presentation of my food on the trays I brought into my husband, my daughter and my mom who were all in separate rooms, writing them notes on each tray I made. I never thought I would enjoy the love that all of Corinthians 13 expressed in the Bible in many ways throughout my days at home with the virus. It was so hard to keep going taking care of everyone when I had Covid too. I felt awful. I had MS on top of the Covid and I struggled deeply. I had to keep mom isolated as well so she couldn’t help because I didn’t want her to get ill. Then…I left again from home, and it all changed.

I was surprised by the fear and the emotional turmoil I felt over being there in the ED yet again and then transferred to another hospital. The Covid precautions with the private room were so isolating. The profound sadness crippled me. The loneliness I felt and not understanding why some people are okay when they have Covid, and others are not. How did I become so traumatized by Covid? I am not sure how I kept it together. I remembered back to being at home with Covid and how I gave up my bed before I got Covid so my husband could isolate and then I gave everyone their own rooms and I slept in the living room with the dog on the floor. I became sick soon after too and remained a nurse at home through it all. I just kept serving my family. Then it hit me in a different perspective when someone online said to me there was a quote that inspired them. I do not have the quote word for word so I will paraphrase, but it went something like, ‘I didn’t come this far to only come this far.’ So, I decided after reading that in that moment I would FIGHT.

Now, I am inpatient in a hospital far from home about an hour away and receiving a gram (1,000ml) of Solumedrol a day through my port because my MS took a massive hit from Covid. I am writing this because I am on the edge, restless and exhausted. Steroids are the worse. You feel like a million bucks then you crash like having the biggest hangover of your life but say you throw having the flu into the mix too. The biggest lesson I came to here in my stay is to not go to bed angry, be patient (that’s a hard one for me) with each other, do your best because that is all anyone would want. Wear all the roles in your life well and do them with love. Lastly control your thoughts because they will overwhelm you if you do not. This virus can take you do a low point emotionally because for a while I thought I may become part of the statistics. After a blood test to my shock, my Covid antibodies are O due to being on my MS treatment, ‘Ocrevus.’ If you get Covid I pray it’s minor for you, but it can go the other way you know. Remember that God is in IT with you. And in your lowest moments remember you are loved; someone out there misses you and is there for you. So do not be afraid to ask for help because either way, YOU GOT THIS.

Some of my pictures from my picture diary of having Covid:

I think I have heard it said in many different ways that where you are headed in life is far more important than where you are coming from. I had writer’s block last year and then a bad case of procrastination. It seemed my life no longer made sense on paper or even in my own thoughts. My life was rapidly changing last year and as chaotic as it was I learned I had to be comfortable being uncomfortable. Especially if my life was to change and it did.

Home is a place in my heart. I moved a lot in my younger years and I stopped getting attached to places a long time ago and more attached these days to the experience of life. Home was no longer a dwelling, but a feeling. So when my family made the choice to leave what was home for a decade, a town where we lived for decades and move to a new state, new town and all the changes that came with it, we decided to start living radically and JUMP. Now, it wasn’t any one thing or any one reason. We realized that our lives, our health, our dreams for each of us were changing and we needed to make a change or we were going to live in such a way that wasn’t what we envisioned for our future and stole our JOY. And when we all sat together, my mom included, it seemed to make more sense to move to where our family could live WELL in every aspect. The state, the town all doesn’t matter now as I write to this to share. What does matter is that the journey was worth it, it still is and its constantly changing. How many can say that they started over or took that leap or tried that new thing that would make life turn upside down so it could be right side up again because that was what life demanded? Where is HOME to you? Is it a place or is it a feeling?

“Stay curious,” was what my daughter told me in the Fall of last year. By then we were already in our new home and it sat with me and still does. A metaphor for living if you will. Always be watching, looking, wondering and asking those questions. When I wasn’t sure that my blog made sense anymore and not sure if my journey with MS could be that interesting, I sadly quit. I quit and then I LIVED. I kept a mental journal of all the titles, all the experiences, the highs and the lows, the losses and the try agains if you will. But yet I couldn’t reengage or find my way back. My writing now rusty and so much has taken place where to begin again. It hit me like a brick falling on my head when my site renewed for my blog and it cost me money then I thought okay I need to make up my mind.

So how is my current state of affairs? My MS is still stable thankfully as in no new lesions in my brain or my spine and I had another infusion in the Fall of last year that went great with the new infusion facility and new neurology group. The leap paid off big time and I guess I kind of knew it would deep down. My friendships in my life drastically changed. Some amazing ones came, some went and the true friends stayed. Actually, all of them matter and all those friendships serve a purpose in my life. While I would say some life lessons are damn hard to learn and pull at your heart till its numb it seems, I found a great deal of growth in the friendships that changed and left and I am now happy for the way it changed me. I also feel the need for much more privacy in my life and it has paid off for me in how I feel emotionally. However, that makes it hard to share at times anymore because when you are content in life, you no longer live life as a SEEKER, you STAY. I love my life everyday from the comfort of my environment, the feeling in my heart and I no longer need to escape or find that contentment anywhere but where I am. I am loving the simplicity my life brings me now and I do not feel the need to find the JOY. because the JOY now finds me and it stays.

So…do I stay with this blog or not? For now, I am going to try. I have a story and I find these days I share it as I live it, but not in writing so much now, but by my actions, my thoughts, my daily grind so to speak. I am a wife, mother, daughter, niece and friend. I wear many hats in my day. I am enjoying my grey hair and the idea of turning 42 soon. I am glad that my hard days (believe me they are still there) are teaching me to live fully for the good days. While the chaos is still there, it is in a different way. In fact, the first item of decoration for my new home was, ‘Welcome to our perfect chaos.’ I am not sure if this blog will stay only about my MS. The title, “MS’in With Your Mind,” still makes sense to me because my MS has changed me, but for the better. My incurable disease is a part of me. While I do not have to like it as someone once told me, I do have to live it and how I live my disease is my legacy. Its my story. I may not work anymore and have the accolades that I once thought defined me or even mattered. I read somewhere once that the hole 6 feet under someday is the same for all no matter what you did in life. But I will be remembered for my strength and my outlook, how I dealt with my disease, how I took care of my family and all the rest. And that now is what matters to me most of all.

So my question for you is, “Where are you headed?” What does that leap of faith look like to you and is there something deep inside of you that wants something more? If so, give a listen to it and find out. DREAM. And most of all FIND THE JOY!

When did we stop coloring? When was the last time you picked up a crayon and colored a page in a coloring book? Last night, my daughter asked me to color with her before bed. I enjoyed the simplicity of it all. I had no idea what colors I wanted to use when I started on my page. I just relaxed and let loose. I had fun. However, I realized some very important things about myself while doing so in the quiet time we shared sitting parallel to each other.

Coloring takes patience and attention to detail. In my life as of late I have needed a great deal of patience. That is an area of my life I truly struggle with lately. I am finding myself in that busy season again as I call it where I am inundated with going to constant weekly medical appointments for myself and a few for my daughter. It can be overwhelming at times for me and it zaps all my energy which leaves little leftover for the daily things I need to accomplish as a regular part of my life.

In coloring, you aim to stay in the lines. I have a certain degree of self discipline in my everyday where I like to know all the details of my day so I can “stay in the lines,” and feel that I am controlling the narrative of the day. If I get out of the lines like in coloring, I can’t erase it and it feels that I have permanently screwed up or I can’t redo it and take it back. We all have days that we think are going to go according to plan and then one small thing or one misstep out of bounds and the day takes a turn for the worse. I do not function on the, ‘grass is always greener on the other side,’ when I look at life. I am a bit of, ‘it is what it is.’ outlook on life. But still with a good degree of optimism. I always feel there is room for second chances and sometimes a much needed third and a fourth.

Living with MS there is a lot of second chances that I give myself in a given day. I realize that planning my days does not work for me anymore in my 40s. I have a calendar and a very loose agenda. I used to love to plan and cross things off my to do list, but I feel those days are behind me. My physical symptoms change day to day and get in the way of my best laid plans and now I just roll with it. For my family and close friends it can be a source of annoyance at times because I am uncommitted to an agenda and I change my mind a lot or I cancel my plans on a whim. I make no apologies about it now except that it is who I am and I realize trying to change that is just not going to happen. I do the best I can and I am glad for God’s grace through it all. However, this comes with much frustration because I still deep inside want to accomplish all I set out in a given day and I feel at times like a failure if things do not turn out as I see them in my mind. Have you ever been there?

Even as I colored with my daughter last night, I still tried hard not to let my picture get messy. I couldn’t let loose fully I realized and just color. But in the end, my daughter loved my picture and we enjoyed our time together which to me was the best part. It was the TIME I gave to her that she most enjoyed. Whether or not what I colored did not matter, nor did it matter if it was colored perfectly. I glanced over to her page and I thought she did a great job coloring. It was clear to see with her age that she had come a long way even since last year, but I also kind of envied her, ‘out of bounds,’ approach still. To approach her page as she should by just being a kid. I wanted that and I still do.

Be comfortable with the uncomfortable. You can try to control as much as you want of your day. You can put every plan in place and use every resource you have. You can rise out of bed and say this day will be different. You can look in the mirror and fill yourself with positive self talk. BUT be prepared for the day to not stay in the lines. Tell yourself it will be okay even if it’s not okay. Know that you do not have eraser and make sure you are prepared to start over or create a new page.

We are our own worse critics. We need to be our own best friend too. I will never live up to the image of myself that is in my head and I am okay with that now. The ME that I am today is far better than the me that I was yesterday. I have made mistakes and recovered. I am experienced and have learned to try again. I am stronger because my health struggles have created adversities that I have had to overcome. I am a fighter because I will not give in. I am brave because I am sharing my journey now and unafraid of being vulnerable. I am a wife, mom, daughter, niece and friend. And so, I leave you with this last thought…

Color your life with seeking out the beauty of each day and being ever ready for it to throw you out of line. Embrace the messiness as a sign that you are ALIVE and LIVING LIFE. It’s all about perspective in the end anyways.

It’s been a while since I have written. I find for me that writing comes when I am moved to do so. Maybe it’s by circumstance or a sudden memory pops into my head, but I truly wait for it down deep in my soul and then I sit down and just start moving my fingers. I never prewrite anything. The best of my writing comes from being unfiltered, raw and unapologetic to how it translates from my mind onto my computer. It’s a rush for me. Today is a day that comes once a year for me that causes me deep reflection. However, it is the memories that trickle in of my late Father that stand out the most these last six years.

I find that in life we can wear our grief like a coat. I seem to take mine off now and then and other days it just stays on me and keeps me feeling safe from the outward elements of life. There are days that I want to just sit and surround myself with pictures, songs, lots of Kleenex and some old cards my dad wrote from my dresser drawer. There are many times that it passes quickly over me and other times it comes on like a rainstorm with all the thunder then all of a sudden the sun breaks and I feel free again. There are moments of smiling through tears that no longer sting my eyes and at the same time moments where I am paralyzed internally by a memory, a thought and it numbs me to my core.

To find the good amidst the grief I have learned to embrace it like an old wound that has scarred over. It looks back at me like to say, “Hey, remember this…?” I do, and I used to wish it away. I used to get really angry and beyond irritable and just want to scream, shut everyone away and be by myself forever. I remember the last package my dad sent me. One day I was carrying the contents of it to another room to put it out for decoration…one item of it being a Happy Easter snow globe. I dropped it while walking by accident and it shattered, the watered spilled and filled the cracks of my wood floor. I dropped to my knees like I had never done and let out a scream that I never done and just bawled. As my family attempted to comfort me sad to say I yelled to be left alone. I was in utter shock and I guess it was because he had just died not too long ago…and I thought that without that globe, that tangible piece that he gave me…he was now really gone. The permanence set in and I realized true grief for the first time.

You can have a love/hate relationship with loss. Sometimes I will intentionally play a song just to get it out of me because I find over time it builds up. It’s a release that now feels good when I need it and other times I watch a movie and it comes on, but its more of a happy cry and sentimental. Have you been there? Can you relate to some of this?

I used to equate my Multiple Sclerosis to loss. When I was diagnosed in 2009, I thought the lights are going to go out and its just going to be over slowly in time…every piece of me will just waste away as the years go on. I had just started to live I felt, I was 29. But as the years went on…the loss turned to LIFE. I realized you can live with a chronic illness a disease for which there is no cure and is progressive in time. You can fight the good fight and show your scars in life like victories. You can be at the bottom and rise again all at the same time. If my dad were alive today he would still be my biggest supporter and yet he would still know that my battle was hard and I have a long way to go. He would wish it weren’t so. He no doubt is proud of me looking down from Heaven at this life I have learned to come to terms with. I have used the loss of him to push me farther in my journey of healing, especially when it comes to living my life with MS. Life and loss can exist parallel to each other. You can LIVE LIFE and FEEL LOSS. And there is time for both. I may wear my coat today for a bit, but I will also take it off and see the sun, smile through the tears, and laugh out loud.

I LOVE YOU DAD.

I have many chats in the car with my daughter, but the one I had this past week was especially thought provoking for me. She said, “We are builders of our own imagination.” I never imagined my life years ago would we where it has taken me today. I remember the day that my then primary care doctor told me the results of my MRI at age 29 and that it showed Multiple Sclerosis.

I had a headache. That was my primary symptom at the time of my diagnosis, a reoccurring headache. While that alone is not a hallmark sign of MS, I remember thinking I was going to find out I had suffered from migraines. The look on my mom’s face said a whole different story and I knew that she knew this likely was the diagnosis. What a long road I had already traveled with my health that included a myriad of symptoms that were all over the place. What was my life going to be like now? I was newly married. How at age 29 was I diagnosed with an incurable disease? I no longer could imagine what shape my life would take ahead. I felt internally paralyzed.

Some moments in life you never want to relive and other moments you want frozen in time. During my car ride with my daughter this week, I thought how I was so grateful for the little moments. The many little moments in the course of a day that you cherish and you realize that you will soon forget them, but this was a moment I did not want to. My daughter has an incredible imagination for her age. Her favorite thing to do in life right now is to PLAY. And my favorite thing to do in my life is to be PRESENT. I will soon be turning 41. It’s been said that the years start to fly by and I now more than ever get what that means. But I must say that I am getting good at living in the moment. We were having our bedtime prayers the other night and I talked about memories with her and how I was loving this time with her and particularly the moment I was in of laying with her in bed and my hand holding hers. We were facing each other and talking. I alluded to the fact that I wanted to remember this moment with her, but I knew that I may in time forget it. She said, “You can follow your mind, but you can always follow your heart.”

That was a WOW moment for me. I said, “excuse me,” and I got up quick and I went out to the living room and wrote it on a post it note because I did not want to forget what she said. It was a telling reminder that as time goes on in life and things may become hard to remember that my heart will remember these times. There is a distinct separation to me. I know that my mind will fail me over time. I have severe cognitive issues at times with my disease. This has been especially true in the last few years. I even went to Cognitive Rehabilitation Therapy. There is such a thing if you can believe it? I was surprised. I went for quite a few sessions with a physical therapist who specialized in strengthening my mind. Honestly, I do not feel it did very much, but I walked away with a few better ideas of how to go about my day and preserve my cognitive energy throughout the day. I do know as I age that my mind will start to fail me more and more. My heart though is another story.

The essence of who I am you could say is within my soul. And while that is true, I find that my heart has shaped me as a person and it still does. At times, it may want to guide me into unchartered territory, but all the qualities I love and cherish I carry in my heart. Not in the physical sense, but metaphorically. You can see the essence of a person based on the quality of their heart. My daughter’s heart is beautiful. She is an old soul wise beyond her years of age. I told her the other day in the car that her imagination can take her anywhere. And for me, I imagine my years ahead being one where I try my best to stay ahead of the game and that means for me that I view my life at times like a long journey on foot. Some days I speed up my pace, but most days I have a steady gait. I stop at times to smell the roses so to speak. I stop to marvel at the beauty of life along the way. I question everything. I continue to learn. I hold my interactions along the journey to be all meaningful no matter how positive or negative they are. I view every person as a teachable interaction for me and that I will always learn from that individual whether I want to or not from those I meet along the way. I know that my life on this side of Heaven will have an end someday, but I determined now more than ever to make those moments along my journey count. Not every day will be wonderful, but it will always be beautiful in its own way. Even in the messy times of life.

My MS could’ve broken me and made me live my life as the woe is me predicament. A victim to my disease. A hopelessness view of dread of my life and of each day to come because there was so much unknown. And while the first two to four years after my diagnosis I was tormented by how I was going to find my identity again as a person and what my life would be like if I was just me and not defined by work or the many other things I worked so hard for. I basically had to divorce myself and realize that who I was up to age 29 was still there, but she was now different and it was okay. I grieved the loss of the life I knew before diagnosis and took off to find a new path for myself. I now imagine my life ahead as a beautiful challenge. I want to live with determination and be in the moment while facing the hardest mountain, that mountain being my health. And in the midst of all of it be the best daughter, wife, mother, and friend I can be.

I will end this entry with another piece of the conversation from the car ride with my daughter. At this point in conversation she already had said what I thought was one of the most amazing lines I had heard, but then she added to, “stop and think of our problems.” She had just finished talking about using our imaginations and after we do we need to think of our problems. Not just think, but to ‘stop.’ and think. In my mind that meant to be PRESENT.

The above pictures are just a few things that are part of my self care routine. Let me explain…

The following is a list of how I, SELF CARE:

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1. Journaling: I love to journal. I have several journals (pictured above). One of my most favorites is my gratitude journal. I like to shop at Target or Home Goods for a fancy, fun journal and I jot down no more than 3 things a day that I am grateful for. I feel 3 is an attainable goal for me in a day. My recommended time is right before bed because this leaves you with a sense of fulfillment and positivity at the end of your day. I also have a huge prayer journal that is seen in the lower left picture above. That is from a channel I follow on YouTube called, “Coffee and Bible Time.” Ashley and Taylor run the channel and post videos about prayer routines and a host of topics related to prayer life. They have an Instagram and Facebook account under the same name and they have a podcast. I find them and their mom (Mentor Mama) very inspiring. The prayer journal shown that they sell is a hard cover binder full of pages and sections…I highly recommend it (they have a section on their website you can purchase bible study PDF downloads, this journal, my sweatshirt (seen above) and other items: (coffeeandbibletime.com). I also have a container for pens and highlighters so I can decorate my writing and color. I am starting to add stickers as well. My prayer life is so important to me in my self care tool box. It keeps that ongoing connection daily with God. Somedays I only have 5 to 10 minutes to do it and no matter the amount of time you put it in…any time is enough.
2. A fun tote bag: I used to love purses and always went out with one, but now days it’s a tote bag. The one picture above from, “Life Is Good,” was a gift from a family member, but it’s fun and I love to take a fun tote with me when I am out. It’s just an added tiny thing that brings me JOY.
3. Time with my daughter: In the lower right photo above is a picnic she did this past weekend for me. I loved her imagination this past weekend. She knew it was cold out and I was recovering from my infusion so she packed up a travel rolling tote on wheels of her play food, blanket and tea set. Then she had me wait in my bedroom and I came out to our dining room with it set up. She served me and we chatted. She also put some play fish near the blanket on the kitchen floor to represent us by a lake and we went fishing for our lunch as well. She told me she wanted to do something for me and make us feel like we were outside on a sunny day so she put the dining room light on to represent the sun. It was not easy for me to get on the floor because of how sick I was feeling and mobility wise as well, but I pushed myself. It meant the world to her and I have learned that no matter how my MS affects me….I make time to do these things because they are the memories that impact me the most. Whether it’s a random dance party with her in the living room where I just wave my arms and flicker the lights or letting her put on a magic show at 9pm at night before bed…I let her and we do it. When my step son was little, I created that same magic of play with him and although my MS journey was just starting out back then….I pushed through a lot in the early days to cultivate that relationship and it prepared me for the unexpected answered prayer of having a child when I was told I could not get pregnant years later. My cup runneth over that I got to experience a second time the joy of motherhood. I highly recommend spontaneous PLAY anytime you can with your kid(s). It is vital to laugh and let loose when it comes to self care.
4. Décor: Who doesn’t love to go to TJMaxx Home Goods, Target or Hobby Lobby? I do, however, I have a few other special items like some cross stitched pieces that my mom made me and I have a picture of one of those, above. All that is listed on that is pretty darn accurate for me and a great reminder each day to focus on things that cultivate relaxation of the soul. The one place I have such items is in my bedroom. I get up and go to sleep in my bedroom so it’s only fitting to me these days to have things in there that I see right away when I get up or see when I go to bed that are a visual reminder of what makes me happy and at peace. Also, drawings from my daughter too (shown above). Décor is an important part of self care because what you surround yourself with at home is a reflection of you and what is important to you.
5. Objects are important: Shown above is a little shell character as I call it with glasses on. That was one of the last things I got from my father the year he passed away unexpectedly in 2015. It was in a care package from him that he sent in the mail to me before my daughter was born of a bunch of items that he picked out for her before her arrival. He passed away before he got to meet her in person. You can understand how that little character fills me with a lot of emotion in a good way. I treasure it. I have now become less of a collector of items in my life though. You will not find much in the way of that in my home that I decorate with now…it’s mostly pictures. I am not sure why the last few years I stopped collecting. Maybe it’s because less seems better for me in my life. It allows me to not feel so overwhelmed in my environment. It also is a mental declutter tool for me. So I have a few items that are very dear to my heart, but the more space I see around me…the less overwhelmed by life that I feel. That is important while living with a chronic disease or illness because you can find yourself more at home then you ever thought possible. For me, that is true of my life with MS. Your home then takes on new meaning than just a place to live.
6. Check lists are another must have for me: The one pictured above was in the three dollar bin at Target. I love to cross things off. What a sense of accomplishment I feel when I can write my to do list and watch the items completed. Another way I use it is to keep by my bed at night. I find it helpful when the nights come that thoughts seem to run around and around in my mind from something that is stressing me out or when I am not feeling well. I just take my pen and jot down what I am thinking and put it onto paper. The crazy phenomenon that happens for me is that it completely prevents those run around thoughts to return for the overnight so I sleep better and I am prepared better for tomorrow. It is another tool in my tool box.
7. Gifts of inspiration: A good friend of mine mailed me a collection of index cards that she wrote on with inspirational quotes or verses. It was one of the most creative things I have received from someone and something that I can build off of. I can add more of my own. You can take it with you where you go and I keep it by my bed. This leads me I guess into creativity because my next goal is to create my, vision board. I have been cutting out quotes and pictures from magazines for months. I bought some poster board and I want to put together what inspires me and hang it up somewhere in my house. A motivational tool much like the gift my friend sent. What I love about about now being 40 years old compared to my 20s was that I live in world of social media. And as much as it can be a thorn in my side at times…I have a found a good balance now of it in my life. You can get all sorts of inspiration from various media outlets and followings on Instagram, Facebook, or even Pinterest. I am excited to create my vision board soon!
8. Music is food for the soul: I have always loved music from all sorts of genres. As of late my music choices mean more than the lovely tunes I hear in my ear. The music lyrics have got to say something to me that not only brings me JOY, but also inspires me or helps me to cope with whatever I am experiencing. I even like the sad songs too. Maybe it’s because it brings me great emotion which cultivates a great release of emotion. Feeling my feelings is important in self care and it’s important for fighting against a chronic life long disease. It motivates me to push harder, look deeper within and get lost in a song. One of my two favorite cd’s that I listened to a lot from last year, but still going strong is Christian artists, ‘for King and Country’s,’ “Burn The Ships,” CD and also ‘Lauren Daigle’s,’ “Look Up Child,” CD. Check those out if you can, I highly recommend.
9. Coffee mugs and coffee: Calling all coffee lovers…. What is your favorite kind of coffee? Mine is a dark roast. And might I say, ‘strong too.’ I really enjoy the Starbucks Italian and French roast. I have a Keurig machine and it is pretty much my life line as far as a drink goes. I have worked in coffee shops in the past and I just love a good mocha too or americano. Starbucks K cups is just one, but I love a plain mocha too from anywhere. Checking out coffee shops is something I love to do and to support local. I recently got a blender for Christmas for a gift and am happy to say I have created fun mocha frappes at home and enjoying experimenting with it. I like to start off my day with a strong cup of coffee. I do not put anything in it. I did something for 2021 that was not a resolution for me, but a commitment. I decided to create a, ‘Coffee Cheers,’ post each morning to my personal Facebook for all 365 days of this year. Why? Well I wanted to get friends and family together online each morning as if we all met up at a restaurant and sat together to have a cup. 2020 kept me inside because of my compromised immune system and I am loving being able to connect each morning. First, it holds me accountable. Much like making your bed when you get up, it’s a sense of accomplishment. I woke up and said, ‘Hello,’ to the world and I toasted a morning cup of joe to say, ‘Hi.’ We all need human connection and a place to belong. While I have had to be home and not see friends in almost a year in person I figured that it was the best way to stay connected and again another tool in my tool box.
10. Going to bed each night and letting things go: This is so important. Why? Well I am not referencing a fight here or even any discourse. I am simply going to bed with nothing that is preventing me from feeling love. It’s easy for me to fall into feeling woe is me on the days I struggle to make it through accomplishing anything with my illness. OR the guilt I may have from not being able to engage fully with my family. I always end the day by an, ‘I love you,’ to everyone in my household. I pray each night over my list of requests, I write my gratitude and have the sense of reality that, ‘well life is short.’ This we know more than ever. And that end part of my day sums up my self care. Yes, there may be things inside me unresolved or that I am working on turning over to the Lord etc. But I do go to bed with it put to the side. I do choose to not hold a grudge. I do choose to love. And say thank you for another day. Bedtime prayers are essential in our bedtime routine. It is something my daughter does too each night now on her own I am proud to say. There are two questions she answers. What are you grateful for? (yes, she does knows the meaning) and what brings you JOY? Then we say a joint prayer and go to bed. What I started doing this year was recording her answers again. We started the questions portion of prayer time when she was 4 years old. If finding a sense of faith is hard for you right now, then I encourage you to just start out with those 2 questions each day. Watch how things start to change for you. You will chase in life what brings you JOY and foster what makes you grateful.

11. A favorite saying or verse: The above one is mine. It is from the Bible, but it just rings true for where I am now in my life. I want how I live my life to be flowing throughout my home. And I mean that my home is a reflection of my faith. Not in the visible sense so much, but the unspoken. It encompasses love, family, growth and togetherness. It has memories built within. Home to me is not a place or dwelling, but a space in my heart where my family is together. Where we DO life. That wherever life takes us, our home is within us. And we honor the Lord in how we live. Not just in the physical sense, but in our actions, our day to day and how we relate to each other.

12. Goals: To have a mindset that is still wanting to move forward and accomplish. With living with MS, my future is very shaky, unpredictable. It is hard to see ahead and make plans. Many of my plans get cancelled. I can’t live into tomorrow. I can only remain in the present due to my circumstances. If I have learned anything from years ago it is that planning is not a good idea for me. But I have goals. This way when I have to change course abruptly due to my health needs at the time, I still am reaching for something ahead knowing that in time I am working towards it even if plans are halted for today. It allows a lot of HOPE into my life. The one foot in front of the other approach.

13. Self help books: I am not a fiction reader in my life anymore. I keep trying, but those days are long gone. I am in the non fiction realm. I really enjoy learning. Learning in general. I love self help books or books that motivate. Auto biographies too. These type of books have really helped to give me ideas of ways to grow my self care routine in my life. For me, reading is a vacation for the soul. It spells TIME FOR ME. However, the Bible is now the one that takes precedent because I want to really study and learn it. So self help books have fallen second for now. I also love to read to my daughter and encouraging that in her because to me there is nothing like a great bookstore to step into or a library to visit and discover.

14. Do one thing: My advice for living with a chronic, life long disease such as Multiple Sclerosis is to do just one thing a day. Set out to accomplish just one thing. As many of you may know that have health issues or know of someone who does that in a given day, doing just one thing is all you can do. In 2020, I got to looking like I lived in the never ending lounge pants, hair up in a bun and loose tee shirt. It became a uniform. Then it hit me last year that why was I doing that? I had to be home for one. I made an excuse that it was the easiest thing to wear and why get dressed up if it was just me and my family home because I wasn’t going out. However, little eyes were watching. So early on in the pandemic I thought let’s just get up and SHOW UP. I am gonna dress up to teach homeschool Kindergarten. I am going to take time to put my hair back and wear something nice or at least that looked like an outfit. Then it became some lipstick I added. Soon the vibe changed and a stride developed in my step. The pandemic year became easier to handle and what I realized was that one small step each day no matter what that was for me was enough. Making my bed that day. Meal prep. One thing. One thing was all it took for me to feel accomplished. For me to feel real. Think about that for a minute. I also let go of the guilt that some days, one thing was all that could be done. God sure doesn’t care if my laundry, dishes, to do lists and so on are done. He cares for my heart. He cares for me. And me caring for myself is honoring God.

I am sure this will not be my only post on self care. Wouldn’t it be neat if I made another 10 years from now when I am 50 years old?! Self care is essential to me because it helps me live my best life. In my 20s and early 30s I didn’t grasp the concept. And with my MS developing more over the years and more symptoms to navigate, it forced me to stop and take a hard look at what motivates me and drives me ahead. To be honest, it also helps my head stay above water so to speak. There is much that can bring one down in life. Having my illness has meant a lot of loss in my life, but that will be another blog entry. I set out in last year in 2020 to find the things that I needed in my tool box or wanted to have. After all, I am home due to having MS. But being home with my daughter for the majority of the year of 2020, in many ways forced me to do life differently. Create a world within a small space. Foster all the things that the pandemic stripped away. It was great, but it was also hard. Mix that with my illness and many other changes in my life and I had to get to a place where I grew happiness, literally, and I found that fulfillment in the self care portion of my life.

What do you think of when you think of self care in your life? Do you have a verse, a word or a mantra that wakes you up and gives you a driving force in your life? How about answering what brings you JOY each day or what are your grateful for at the end of the day? If you already have your own tool box I think that is awesome. If you don’t, I hope that this blog entry may stir up some ideas in you of how to build your own. Or maybe you would like to expand on your self care routine.

Below is a card I have kept since my grandfather passed away in 2009. It was his last card to me. I think it is fitting and just sums up what my self care is to me. You see, he had cancer and was terminal. I was soon to be married in the Fall of 2009. He passed on earlier in 2009. The beauty was that in his note he was loving on me despite his own battle. He was extending an extension of himself…he was loving me. He was looking ahead for me so that I had a part of that love to carry me forever. What he didn’t know was later in 2009 I was to be diagnosed with Multiple Sclerosis. He prepared me with this note. Its part of my décor on my wall in my bedroom. I hope it inspires you too.

This is the first day since I started Ocrevus back in 2017 that I have remained home without going to the Emergency Department overnight. That being said, last night was brutal. I only ended up getting 2 hrs. of sleep overnight. The anxiety I had from the unknown which I talked about in my, “Number 8,” blog entry was paralyzing. I stayed up till 3 AM because I was too afraid to fall asleep. I sat up in the recliner and kept my mind busy. It is not recommended by me because I had to get up so early in the morning to help my daughter start her day and get ready for her schooling that she is doing at home. My reserve tank as I call it was simply empty and I had to be ready to get up in just a few short hours. Why had I done it to myself?

When I did wake up this morning…I was stunned. I could swallow. I had no sore throat. I went immediately into the bathroom to gaze at myself in the mirror and I did not see a red lobster looking back at me. That description is what I call it because of how my skin looked the following mornings with all the other past infusions, like I was sunburned and as red as the reddest of lobsters. I was surprised. It was so unfamiliar to me that I was in a daze from being so over tired, but then realized I had to start more premeds and start a Medrol steroid pack as soon as I woke up this morning. It’s a steroid taper pack. Six days worth and you start out with the most pills on the first day and on day 6 you only take 1 pill.

I was thankful that my mom was home to help get my daughter started with her day and I got my coffee, breakfast and took 6 pills in the steroid pack at once. Anyone who is aware of it’s cousin, Prednisone, realizes how bad the aftertaste in your mouth is unless you swallow those pills at warp speed. And I tried. By 11 AM this morning I had still not slept more even with all my attempts to try. My mind just won’t shut off and there is a restlessness that is just awful. But I remember it all well…this is how it goes and I always come back to realizing that I have been here before. I can do this.

I am not out of the water yet so to speak until its been 72 hours post infusion. That is the time frame where anything is possible. Last infusion, my face swelled some and my lips were swollen. The redness too of course was all over my upper body and face. Today, I was looking back at myself and I looked like, ME. A strange and foreign reality that had been years since I had witnessed that after an infusion. What I know most of all is that to really rest is to come from a place of rest.

Those of us with MS know all too well that sleep is crucial for balance in our life and for us to feel well. I have suffered from insomnia since I was little. Most of my jobs that I had when I was working were overnights. I loved the night shift. I could sleep like a baby during the day, but never at night. And there was something about those wee hours of the morning before I headed to bed that was so peaceful to me. However, as years progressed and I got diagnosed I experienced fatigue in a whole new way. True fatigue for me is not the lack of sleep kind, but rather a whole body experience. I describe it like having weights on all your extremities pulling you down as you do the simplest of daily tasks. Some days, just getting up from a sitting position takes all the effort I can muster. Other ways it presents itself is, cognitive fatigue. where I have severe brain fog as we call it in the MS community. I can’t read well for the day. I have to have things repeated to me. I don’t understand what someone in my household is saying. I repeat myself what seems like a million times. There is also the ways that fatigue affects my breathing. I am now a shallow breather. I was told that in time MS may affect my diaphragm and in many ways I believe that process has started. The fatigue with MS just lasts some days all day or it can last a few days to weeks at a time. There comes a lot of self imposed guilt for all I can’t do and what I think my life or day should look like at the time.

How did I get here? Can I change it? The answer is, “No,” I can’t and I got here because I have a diagnosis and a disease that controls me in many ways. I accept it and roll with it. I do not make excuses anymore to others or loved ones and even my family. I now realize when I have to miss out on something or go to lay down earlier than I should that I give in because that is the best self care I can give myself. I may have a day or a few where I literally get nothing done. Just staying in survival mode and pouring into my daughter and husband at home is sometimes all I can muster for the day and all the other stuff can wait. I feel less than at times when I just sit and rest. The hardest part is not giving into the fatigue. I resist it and sometimes I make it worse. Which brings me back again to my point that it is crucial to come from a place of rest. Your reserve tank needs to be filled at all times so when you are using all you got during the day or the fatigue takes it all…you still have some reserve left to tap into.

My decision last night to stay awake because I was afraid my throat would close was not smart. I was at the infusion clinic for 9 hours and I had no reserve when I got home. I was depleted. Then, when you add in the steroids into the mix…you essentially lose sleep for a good 24 to 48 hours because the steroids amp you up. You become so desperate to sleep, but your body will not let you give in. My reserve tank is still empty. I have only still gotten 2 hours last night. What I did accomplish today was being full present for my daughter and getting her schooling done, cuddling. That is something way more valuable to me because it represents TIME. The sleep will eventually come and I know that. What normally occurs post infusion is tonight through a few days from now I will crash. My body will just say lights out and that’s it. What comes with it is a lot of flu like pain and heaviness of my legs and arms. I will feel paralyzed. Its incredibly unnerving. Scary.

My advice in my experience is to always have that reserve tank available. Make sure each day you add some to it so you always have a back up just in case you need to tap into it. For me…I went into my infusion yesterday on the usual 4 to 5 hours of sleep that I get every night. That is my normal. I was so worried about all that needed to be done at home that I couldn’t do after my infusion that I pushed myself as I always do. I, in essence, did this to myself. I would like to say I learn better each time. I also think that it’s just part of my personality. To push myself beyond what I should. Sometimes acting AS IF I do not have MS.

So the take away for me is to be gentle with myself this week. No one is taking a report on what I am accomplishing, but me. I know that for two weeks a year that this is my reality and yet has to be my priority. My infusion and the week after. Every 6 months. I have to let go of what my week may look like or bring and go with the flow. Embrace the messyness of it all. Which is very hard for me to do by the way. I plan to try better next time this coming July and make sure I am rested up going into the infusion. The funny thing is that in creating my blog to now share this life I live with MS, I surely would think I will not forget the next time. What I am most grateful for at the end of each day before I turn in for the night to go to bed is that God is not keeping score either. He is not going down a list at all I didn’t do with my time, but rather how I spent it. What was I feeding my soul with? How was I going about my day? What was my attitude? Where was He fitting into the REST that I was to be getting or trying to get? And I know without a shadow of a doubt that He would not want me depleted. When I am not resting or giving into rest or when my reserve tank is empty….I am further away from God’s presence more than ever. It is in the REST that I am the most at peace and content with whatever is thrown my way…I can handle it.

How do you REST? Are you functioning on all cylinders all the time? Do you have a reserve tank that you keep adding to a little each day so you are ahead of it all when life throws the unexpected your way? Think about it. See what you come up with.