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Stepping toward balancing a “new walk” of life!

Wow! Have you ever done something and wondered why you were so particular about that “thing”?

Our mission statement: Inspiring to step out on faith conquering strife while stepping toward balancing a new walk of life!

Some may not know how hard it really is living with multiple sclerosis.  The mission was created with thought, experience and a desire to help in ways I could not find with my “new diagnosis” of multiple sclerosis.  Figuring out how to apply my new struggle with the resources I had or “lack there of”, while raising a young family, juggling a business, fighting a deteriorating body that refused to cooperate!  I remember it happened so fast one minute I was running next minute I was on a walker.

As you all know I have struggled this summer with a new diagnosis of general anxiety. Talk about scary.  “The not being in control part is hard for me”!  As if not being able to feel ‘in total control’ of your body isn’t enough?! 

Figuring out how to use the new medication was and still is a challenge. The way I requested my medicine left me with limits. I refused to take anything that was known to have a history of addiction, I just wanted something to help me learn how to cope rather than just fix it. With that said, I was on a little bit of a roller coaster ride.

Primarily I was given two medications to start with, as I transitioned off of one, my body went through a grumpy phase.  Both medications together allowed me to experience some of the best sleep I’ve had in seven years, so I was quite happy. After a month, I went through a whole different transitioning learning how to maintain with just the one drug as I noticed my sleep reverting back to only a “hope and a dream”🤣, that played a roll in my already new confused headspace, my family watched me go through yet another scared, angry emotional experience. The thing was the whole time I was never in denial. I did a lot of apologizing, while trying to put this new puzzle together with all these new tiny little pieces that were just dropped in my lap and scattered with all my current disarray! I was losing my grip while trying to hold on. I did not want any new changes. In my mind, my family could not afford any new changes, but we are tough and getting through it. But what does that “really” mean?

I strongly believe you can’t be strong about it and quiet about it at the same time. I knew I had to be brutally honest to the people who take care of me from day to day. Even though I tried to explain to them how I was feeling on the inside I knew I had to keep them involved with every new experience. I didn’t want to be a stranger in my own home, but that’s exactly what it felt like, not because of anyone else but because “I didn’t even know who I was”….

Communication, communication, communication with your loved ones, and caregivers aka Generals is one of the most important steps in the process. Things are now better, as I continue to live the happiest and best I can for ME and the ones I 💕.  I have had to rely on faith and stepping toward balancing a new walk of life, a lot lately. Physical balance and life balance is my everyday priority. I really never know what to expect until I get up in the morning.

“Today is always different from yesterday and will always be different from tomorrow” D. Young- MS Advocate

I find peace in knowing that I have to start my day with balance in mind inside and out! Balancing makes me strong, keeps my core strong in more ways than one!

Are you stepping with me? Are you determined to seek a newfound balance in your life?  Eliminate whatever keeps you from seeking balance. 🧡 Desmine

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Controlling your Control

Ever feel out of control? Your chest is heavy, you can’t breathe, you start pulling and tugging at your clothes. That bottle or jar you always felt trapped in “physically” because you could not run, jump, or be active suddenly feels real! No longer an analogy but very much a reality. A reality you hear many people disregard or belittle.

Ever notice how people pick and choose what diseases or conditions they consider relevant? The ones you physically see are usually more accepting. Me for example my disability is noticeable. I must have aide to be “safely” mobile. I mainly use a rollater when I’m out by myself. I always get the question inquiring about my physical state compared to my appearance in age.  The public obviously sees I need the rollater but judge when I first pull-up in a handicap parking space. I surely don’t “look” like I need the power shopping cart while shopping  in it until I get up. Sometimes my situation is accepting, other times, people are not sure.

People understand what they “know” and may struggle to accept what is “unfamiliar”.  Never feeling what or how you feel. The feeling of confinement, trapped in your own body, or maybe you feel like know one understands? You wanted to go to that family gathering, you didn’t make it to your uncle’s funeral, or you’re tired of not supporting your child’s school physically. It’s not that it happens occasionally, you can’t be involved more times than you actually can participate in things that are important to you. After a repetitive scenario you began to feel like your third grade class hamster stuck on that silly wheel going through the motions getting absolutely nowhere! It’s an out-of-control feeling, never getting a break from the pain and fatigue.  Using your energy and everything you’ve got, to get absolutely nowhere- or so it seems…

A diagnosis of anxiety on top of multiple sclerosis definitely set my world upside down this summer.  I can’t express to you how many times I have felt “out of control”. I’m gonna start by saying that the anxiety and depression community definitely deserves more respect  than given. Let me be clear when I say, I commend anyone who has struggled with anxiety at any point in their life. It is not fun, it is not easy!

Keep in mind there are ways to handle this particular situation. Number one is being honest with yourself that it can be an issue if you let it. It already is an issue if you’ve been diagnosed. It is definitely a hard adjustment. The hardest part is staying in control and not allowing the situation to scare you 😱😰😭when it shows up. Learning how to respond instead of react has been one of the biggest lessons for me. I remind myself of this daily and realize I must take anxiety one day one step at a time just like multiple sclerosis. I am a mother and wife first.  Taking the time to communicate with my family about how some things are different and a plan of how we as a family together can Stay in Control is a working progress with many challenges.  I know I must be mature enough to keep in close contact with my doctor, and use the research given!  It’s a must, that way my family can stay in control. It is OK to get help, talk to someone.

 

🧡 Desmine

 

Life changes…

It has been a while since I spent time here. For a couple of reasons. You know, life continues. Even when you slow down even when you can’t, life continues. What do you do from day to day to stay grounded? What are the things that you make sure you put in your life that keep you well? I just don’t know, do you feel like you have it all together? Can you tell a difference when there’s been a change? A change in your happiness, a change in your mood? Perhaps you change your whole routine altogether? If so, do you know why you made change?

Change could be great if you intend on  greatness, prosperity, and success. Great changes are getting married , a promotion, graduations or even just a simple compliment when you changed your hair, or that day you made a decision to smile 😏😌😊😃 more. Great change for me is when I try every day to be better than I was the day before. That’s been a Great and positive change of mine since my diagnosis of multiple sclerosis. It was something that I knew I had to change within myself in order to conquer this goliath of a daily challenge we call multiple sclerosis. It is most definitely the hardest thing I know I’ve ever had to deal with and with that- I’m sure there has also been change in who I’ve become. Multiple sclerosis in itself brings on change. Changing the way you do every thing. Changing the way you think, changing where you go, who you go with. It most certainly changes how long it takes you to do “something” or how it gets done altogether. Like my laundry for example, It still gets done. I may need help to get it done or the way I get my laundry to the laundry room is a completely different way. And I’m Pretty confident that I look quite silly getting my laundry up the steps to many but I get it up the steps. Change… do you ever just sit and think about the changes that multiple sclerosis has put you through. I most certainly pray that even with your challenging changes you find a way to smile. I certainly hope you find purpose in your new changes and when changes come unexpectedly like most of us with a diagnosis of multiple sclerosis. I must certainly help you pray that you find balance and unexpected changes that make life more difficult.

Difficult changes is what I’ve been going through the past few months. I work out regularly eating better and I get more things done. There has been a change in me that I knew wasn’t me. A change that made me aware of the fact that I am a mother and I am responsible for my children even when I don’t want to admit that I need help. Help is exactly what I sought after.

After a week of a series of panic attacks, getting annoyed during my workout, snapping for no reason, feeling like I couldn’t breathe,  just complete agitation altogether. I made the decision to go to the doctor and was diagnosed with anxiety on the spot. Talk about reevaluating some things. 🧐😏. I knew that I had to make some changes so I could concentrate on my newest change. I am still learning how I fit this new challenge into trying to uplift and lead a community of people to more hope, less blame and anger. After sitting and praying and thinking, you know my family and I decided that you can’t help people unless you’ve gone through something yourself.

Not surprised with this diagnosis at all, I mean my brain fights and is on overload all day just to make my body move and work, function and maintain. There’s no surprise that a chemical imbalance on the brain decided to invite itself.  I mean if you think about it, it’s already a war zone on our brains anyway. This particular change makes me want to change my lifestyle. conquering more goals, acheive more challenges! Or is it my age that makes such a change. Maturity and understanding helps me get through the day, and for “me” I know I must read The Word (bible) or, I’ll get lost in all the noise! It’s so loud out there. Just trying to make a decision. For some, they result to yoga, or meditation, crying it out to a trusted friend. I chose my regular routine just with alterations and more awareness.

You do realize that with every drastic change there is a choice. There is a decision that you must make. Rather the decision is to fight it alone which I do not suggest, seek help, make the decision to make the best of it, and, oh yeah there’s that decision to just sulk in it, be angry at the world, blame someone or something for your changes or should we take the “Stepping toward balancing a new walk of life approach?  I am still a very faithful person and I know His grace is sufficient for me, so this too shall pass.

🌺 Desmine

***Now the website is manageable, I will get back to blogging again. I have missed you all and look forward to engaging with you regularly again.

*** Find Step For Me a Multiple Sclerosis  Foundation on Facebook and get inspired to push.

***You may also chat with us on Friends who like Step For Me on Facebook as well.

We have videos on YouTube that you can follow or actually talk about this no battle with anxiety

MS and Who You Are…

HELLO, HELLO! I hope all is well with everyone. Yes, I have been absent for a little while and have missed laying my heart out to those who are willing to read about it. I must say I’m really enjoying putting together a nonprofit organization for our community. It’s funny how I set out to build this organization for the community but it’s so interesting how the community pays it forward right back.  I am enjoying communicating with the area to come up with programs that may not be available yet. It is a lot of WORK with a few yeses and a whole lot of NO’S 🤔. I am grateful for the No’s.  They inspire me to work harder. I get it though.  Who am I to think I can help Inspire those out of an angry state of mind into a more positive mindset. Well, I am that one that wakes up happy taking notes of what kind of day I’m going to have. I am that one who is not going to let multiple sclerosis change my happiness. I am a person who enjoys inspiring, talking, and engaging with others about our fight. That right there alone is healing to me. That – I love making a part of who I am. I was telling my mom recently that I can no longer put myself out there with negativity. Multiple Sclerosis and negativity do not get along! For me it’s like oil and water.  Temporarily you can get oil and water to blend but it’s not forever, a rather short interaction. You have to keep your interaction with some people the same way and that’s okay. It’s necessary in order for you to find a new balance and realizing Who You Are. I AM at the point in my life that I realize I strive off of positive thoughts, positive energy, positive people! Everyday I’m finding ways to customize a routine, a plan that not only works for me but everyone around me!

Multiple sclerosis does make me angry though. I don’t want you to think that I don’t get in a funk because I do. Multiple sclerosis makes me angry in ways that I resent that my family has to go through so much from my disease. Why? Why? Why? So I had to find ways to deal with this. This one thing has the potential to change who you are if you allow it.  I am a mama bear and I suffer daily to watch my family deal with the fine details every day to make our lives work. Sometimes it’s hard to indulge the fact that the rules have changed. I am Mom and what mom says goes, but at the same time they have the liberty to tell ‘Me’ No for my own good. This too can change who you are, you’re not losing control your loved ones are organizing a new balance that’s healthy for you.  Setting ground rules and make sure everyone has an understanding so that you don’t get lost in what you’re dealing with is crucial. We have to stay focused and I understand that it’s not our fault that we go through a whole lot of pain and confusion. I also understand how lonely of a disease multiple sclerosis can be. We are always walking in somewhere or at an event where you’re the only one who may have a physical struggle, but own it! Own it with a smile! Be approachable! You would be surprised at the strangers and the people who want to help you if you just let them. Something that I still have a problem with to this day. I’m working on it though. Honestly sometimes I forget they’re offering help because they see what I’m going through. Me forgetting that I don’t have to do it all by myself, even when I’m out by myself- if they offer. I came real close to losing my independency and I still can if I’m not careful. But it means the world to me to still be able to drive and go out on my own. But let me be clear, I have to work for that independency everyday! Yes, I have limitations! That is one of the hardest parts of my day is leveling and balancing my limitations. It means the world to me to be able to help my husband run this family.

Sometimes I forget…Sometimes I forget that I have to slow my pace down. We may miss a whole lot of activities as Warriors that we just can’t be involved in but don’t get stuck. Remember that you have a whole community of people fighting with you to live. Never let that change who you are. Maybe instead of pouting or feeling down on yourself for having to say no to an activity. Take that time to work on something just for you.😄😄😄

More importantly sometimes we can get lost in our own pain and hurt that those caring for us has to feel it, see it, fight with you. So don’t push them away. They don’t have to do what they do. Apologize if you’ve been snappy. Thank them periodically for the hard work they do. Make sure you let them know it and that their care and hard work doesn’t go unnoticed. That too can become a part of Who You Are. A less bitter you and a more positive one! Remember, balance!

Again, a life with multiple sclerosis always seems to result back to a certain balance. Cut yourself some slack! Find new ways to love your new limp, that stutter that’s getting worse or even how slow your life has become.😉 What you’re doing everyday is unimaginable. Find ways to love that! Make that Who You Are, understanding that multiple sclerosis is only a part of Who You Are. With that comes some reinvention. You have to reinvent yourself, find a new balance, let go of some of your anger and find the rythm in your heart and make a new step to it. I promise if you step for me, I will step for you🤗

❤ Desmine

Will the REAL MS GENERALS Please stand up?!?

MS GERNERAL – one who cares for an  MS Warrior. One who steps in and consumes duties that the MS Warrior cannot physically achieve. A General also takes control of a situation in the best interest of the warrior.

MS Warrior – one who has been diagnosed with multiple sclerosis

What you do is admirable 😍. Such an act that may not have been in future plans for some. You wake up thinking about our well being and before you get comfortable and rest, you first make sure those you take loving care of is comfortable first. For Generals the routine comes easier for some than others and some have more demanding obligations but nonetheless, your Warrior needs you. The job comes with so many duties and consequences and managing our daily routines while maintaining your own can be a circus 🎪 act. Finding and keeping everything balanced should be the goal not perfection, not a show. You’ll be surprised how balanced you become with love and effort. You can mix up a rhythm that helps you stay balanced. It does require teamwork but you see how our bodies change from day to day. We feel what is going on. The problem is we have so much going on with our bodies we lose focus on the pain, numbness..because we so desire to be that same “soccer mom/dad” 💪we use to be. We still have that ‘save the world mentality’ stuck in a slow motion film. So as a General you may see a relapse in the horizon while we are stuck in a war zone, a time lapse or that slow motion film. Your job is to report back to us in our ‘current battle’ to let us know what’s ahead.

It sounds tiring doesn’t it? WE’LL IT IS, IT’S TIRING FOR THE GENERAL AND WARRIOR, oh but there is balance. I promise, there is balance. But as a General, you have the right to tell us NO! If we have too much as a Warrior to carry (metally, physically), as the old oak tree, we come tumbling down…

You may have to find the right way to tell us NO, but never neglect to tell us NO! You can catch our slur on video or how our foot drop may be changing.  You may start with, I think we should try something different. Are you still stretching everyday? I was reading something and I think it might benefit you if….

By all means necessary find a way, find a way to bring and keep a healthy balance in your lfe! Sometimes we try going faster that our bodies can’t physically keep up with and mentally…. I don’t think I need to remind 🤔 you how easily a Warrior can get confused or just darn right FRUSTRATED 😲?

So how do you juggle all this without losing focus. How do you make sure you take care of yourself as a General?

I can’t really give you an exact assignment but I can reasure you YOU DON’T HAVE A CHOICE! YOU MUST TAKE CARE OF YOURSELF! Communicate with one another. You will find a way. You, our Generals are so important to us. You have genuine concern and care. You keep us safe but more importantly you push.  We could push on the bar to help us good quality care of each other no matter if you are a spouse, child, parent, friend.

Continue to do what you do. Those who do it for their loved ones sometimes forget that you are still serving. Truth be told I thought that’s how we are all supposed to be serving one another. Don’t forget that we see how hard you work, we say how much you sacrifice just for our benefit. That is a special kind and thank you.

From the Warriors, we think you Generals rock and with you by our side, we can better step toward balancing our New Walk of Life!

❤ Desmine

Multiple Sclerosis and a “New Walk of Life!”

It’s interesting how Step For Me a Multiple Sclerosis Foundation was built. The idea came in like a Commander in the night. Not only do I remember the moment the idea was born but I know where the idea came from. It was the strangest thing. I must say my children are a big influence. They helped come up with the logo, engaging their father with every step. They understood and assisted with the mission. A portion of the mission states “Stepping toward balancing a new Walk of Life!”  My girls and I started with a notebook and a couple of pens. We started writing down keywords. Key words that represent what we were going through and what we wanted to achieve. Funny thing is, it really didn’t take us long. When the name “Step For Me” came to my mind several weeks prior, it was pretty much set in stone. There was not a whole lot of talking about it. It wasn’t a whole lot of pondering over it. At the time I was blind in one eye, and couldn’t do for myself. My husband was literally stepping for me, my children as small as they were, we’re stepping for me. The more I engaged with others struggling with my fight, I realized why it had to be called Step For Me. I needed help with everything, so did some of them in the fight. From getting dressed to walking, I even needed help bathing. I’ll never forget sitting on the edge of the bed and sliding because I didn’t have enough strength in my legs to hold myself up. I realized that in order for me to get through this, I needed help. I needed help in so many different ways and directions. There’s also some hidden references in that title. I am a very spiritual person though I can’t say I was at this level of relying on faith when MS introduced itself.

So the idea of Step For Me is not my idea at all. I’ll never forget that night. I’ll never forget all the things moving, crashing in my mind, it was so loud. So I asked, why me? I’m sitting here in Depends, blind, can’t walk… I was really taken by the weight of this “idea”. Then I heard so clearly, “My grace is sufficient for you, for my power is made perfect in weakness.” 

Yeah, yeah, I know, I know. There are some who don’t believe it, who will never believe that. But that’s okay. I’ve already had comments of others disbelief in my faith in this “New Walk”of mine. The thing is the better you get at relying on faith the easier your walk becomes. Some of you may think that I’m only talkin “physical walk”. I’m actually talking about New Walk of Life in “everything”! There’s absolutely no way I could get through my days with the smile on my face without a certain level of faith. It’s not something that comes overnight. It can be worked at, it can be practiced, it can be taught.

MISSION: Inspiring others to step out on faith, conquering strife while building inner strength. Stepping toward balancing a New Walk of Life!

I believe my assignment is setting this tone. A place of comfort, a place of understanding. Multiple Sclerosis is a BEAST! In my mind multiple sclerosis is such an ugly disease. It’s the unknown for me that makes it so “beastly-like”. I need order in my life. I have always had structure so I rely on that. So the hardest part for me is living this life in a swamp of the unknown.  I tell people everyday I never know what kind of day I’m going to have until I make the first few steps across the floor. I don’t know about you, but it’s really hard to make plans when you have no idea how you’re going to feel. How I feel that morning is how I “structure” my day. See, balance. “Stepping toward balancing a New Walk of Life!” …that whole phrase is the life of an MS Warrior who wants more, who wants better, who is determined to achieve better, realizing with the right amount of faith we can still LIVE!  Some of us have a problem with our gait. So we are 1.stepping differently 2. MS is a working progress of a balancing act of everything we do. 3. Many of us stretch and workout to improve our new walk that comes with our new life  with MS. I choose to keep negativity  away.  I can’t  be angry at multiple sclerosis and expect to heal at the same time. That just doesn’t work for me in my mind. I have to constantly push myself my family constantly pushes me  in order  for me to stay on this path. Yes my MS is a Beast but who said I can’t put some bangles, earrings and a little lipstick on it? With a few adjustments, some creativity, push, a dash of kick butt, the right volume of growl and a great deal of faith we can still live life more abundantly.

I do believe you have to put the right people in your path. I do believe sometimes you have to believe in the “UNSEEN”  especially WHEN WE WANT THE GENERAL PUBLIC TO UNDERSTAND THE MYSTERY, THE “UNSEEN”, THE TANGLED UP MESS  TRAPPED IN OUR BRAIN OF MS, sometimes you just have to walk a different walk, sometimes you just have to live the mystery out. Be Blessed, and step toward balancing a New Walk of Life!

❤ Desmine

Does “attitude” really “matter” with multiple sclerosis?

“Multiple Sclerosis is a  “mind over matter” disease!”  that was the very first comment of Courage I received. Even though it was quite a loaded comment I was just wondering what you thought about that? I heard that over and over and over in my mind wondering how in the world I was going to live the rest of my life with such a disease called multiple sclerosis.  I must say leaving the “normal society” and walking into a “disabled Society”, is like a movie, a movie where you’re a ghost and you can actually walk through a wall and on one side of the wall is life as you knew it and the moment you walk through that wall, it’s a whole new world. Your world is in pieces and you’re wondering how in the world you pick them all up and put them back together again. Believe it or not, it’s War out there. Our bodies are literally going through war. So how do you handle your battles?  I want to make sure that I am relatable with the whole MS community. I want you all to know that just because I’m on here blogging and trying to uplift you, I have challenges too. This new Walk of Life is just that. And how my multiple sclerosis is a new Walk of Life in all realms. We have to relearn how to do everything. For instance Saturday, I was cornrowing my daughter’s hair. I was so agitated so frustrated because even though the feeling in my hands came back on Christmas morning, it is such an adjustment that can be quite annoying. Now that I can feel again I see how weak my hands are. Now that I can feel again using a knife, holding things, pouring things, during my children’s hair, doing my own hair, is an adjustment. Even though getting feeling back in my hands is such a blessing, I have to learn how to relive life with feeling in my hands. It doesn’t come back overnight. I had lived seven whole years not being able to feel my daughter’s cornrows when I braid. It became more of a “touch and see” thing where I could see that I was touching her hair so I just went through the motions. Who would have ever thought???

As I was braiding her hair I could feel the muscles in my arms going ballistic and to be honest with you it kind of wore me out. It wore me out mentally and physically. An extreme wake up call though. A bright light bulb that lets me know that working our body out from head to toe everyday is so important.

I must say I got a little snappy, a little attitude because things weren’t happening the way I wanted them to happen. But I must be careful not to block my blessings. I must find a way to dig deep and figure it out without so much frustration and without getting snappy.

So how do we control such a challenge knowing that we have mood swings. Do we use our MS as an excuse? An excuse not to try harder because it hurts or because it’s frustrating? Do we wake up in the morning with an attitude because we had restless leg syndrome last night and didn’t get a wink of sleep?  Do we catch an attitude because it’s cold and rainy outside and our daughter won’t let us go to her softball game (because that just happened to me last week)?

》》》 okay so they say we have mood swings but do we have to use that as an excuse? So I handled it this way. I let her my other children and my husband know that I wasn’t happy and that I was extremely frustrated and that I was just going to take some time to “pout”. I did just that. I pouted for about a good half-hour, then I put the puzzle back together and kept it moving.  ☆☆☆ remember communication is key.

You have the right to feel the way you feel just don’t get caught up in it. Falling into this routine will result in a life lived miserably and a life that passed us by.

REMEMBER, I am not telling you how to feel your MS is not my MS. How I feel is not how you’re going to feel but I do believe in encouragement. I do believe in advocating for this disease. I do believe that my story can help somebody else because so many other stories have helped me. Together we can beat this Beast but mentally if we can’t figure out how to untangle that confused mess in our head I’m afraid we’ll just be riding that wheel with the hamsters getting absolutely nowhere.

I certainly hope these blogs are helping someone. We do not have to let the diagnosis make us a statistic!

Do you remember your first push of encouragement with this disease? If it was not positive encouragement, find a new one. I do believe that MS is a “mind over matter” disease. So my question is HOW DO YOU MIND THIS MATTER???

❤ Desmine

Was your Multiple Sclerosis inherited?

I don’t talk about this topic very much. Even though I knew the answer to this question before science decided to say MS may be hereditary. I’ll never forget the year I started reading that “studies show”  MS could be hereditary, because everything I had read before said there isn’t research that claims MS is hereditary. Unfortunately that was one of my biggest fights with my doctor before my diagnosis. Arguing a doctor and their science is a hard lesson I learned. A lesson I try to inform you and others. DO NOT WASTE TIME DISAGREEING WITH A DOCTOR. No one knows your body better than you. The doctors had me thinking I was crazy. No, I’m serious I really thought I was crazy because everything I said was going on and what I “knew” was going on, I was told MS is not hereditary! “…so, how did you know, you ask???”

For one and a half years I tried to get diagnosed. I have briefly danced around the topic in some of my previous blogs but I asked for permission first. 8 years prior to my diagnosis, I worked from home at the time and received a phone call from my very own mother. She was chipper, confident, but I knew she was about to tell me something, maybe a death in the family, or maybe bad news about one of my friends I grew up with. In my mind, my mother was a hero with super strength and at times super powers. For her to tell me Sissy, I have been diagnosed with MS. ——-WHAT, what did you just say??? My whole world as I knew it started warming up at the same time my world was slowing down as she explained to me how she came to find out. All I could think about was Richard Pryor. That’s all I knew about Multiple Sclerosis at the time.

Now I don’t know about you but just the words Multiple and Sclerosis together sounded like death in a bottle to me not realizing that in parallel, it can be…. (what I call the black hole) can’t tell you how many times I’ve told my husband that I feel like I’m trapped in a bottle with a lid on tight. You do feel trapped in your own body with no escape. If only we could unzip ourselves and step outside just for a breather would be great, just an out, just a release.

I mean everything else in my life I could relate to gets a break. As an athlete you can call timeout, at work you get a lunch, part-time you get breaks. When traveling a great distance you stop, stretch your legs use the restroom, even during shows or long presentations you get intermission. When giving birth to my first child I remember looking at my mother saying, the contractions wouldn’t be so bad  if only I had  a longer break in between to catch my breath but at least I got a small break, with multiple sclerosis, we may get less pain today but extreme fatigue. We may walk better tomorrow but stay confused for the most part. We never get a break. But I wonder if you all realize that’s a benefit. That makes you amazing, that makes you strong that makes you someone else’s hero. So be mindful of the way you complain be mindful of your doubts be mindful of who’s watching because my mother taught me strength in that phone call. She was not crying in that call, she was not upset, she told me how she was going to handle this Beast, and she is doing just that! She doesn’t complain about what her body is going through. Though she’s not as vocal and open about her MS as I am, she is a huge part of the way I look at fighting the Beast. Her and my husband are the only ones who have seen or heard me cry over the Beast. I guess she’s my personal support group. Even though she still doesn’t complain, she’ll cry with me when I need it.

I even had that hard talk with her shortly after my diagnosis, making sure she didn’t blame herself for my MS She assured me that she didn’t but I can hear it in her tears. She teaches me how to swallow the pain. But I’ve had to learn how to let go, be rid of, or regurgitate what I swallow. My suggestion is to find ways to do the same. For me I stay in The Word, I have to because if I didn’t, I would be angry and I would be cursing MS. I go to church because at church I see other people’s struggles and somehow that helps me support them and get through my own. And for some reason writing this blog, creating a nonprofit organization that I never dreamed I would ever do, and answering your questions helps me get through it at all as well! The more I engage with the MS community, the more cases I find where multiple sclerosis is hereditary so study MS, learn it, learn how to diagnose it. Lord knows I did, after my mom laid the bad news on me, I had to get off the phone I couldn’t call her for 2 days. For two whole days I studied, I think I knew more about multiple sclerosis than some neurologists. That’s how I knew, that’s how I knew for a whole year and a half that I had the Multiple Sclerosis Beast! Learn multiple sclerosis because now that “studies show” it can be hereditary we need to be mindful of what to look for in your loved ones!

❤ Desmine

Are you paying attention?

Are you? Are you paying attention? Do you know the side effects of your treatment? Do you know your body well enough to know what to expect? You can consume medicines, foods, vitamins, beverages but do you know what’s going to happen next? What happens to your body when you forget your daily routine of supplements? Can you tell the difference the next day? Do you sleep differently that night? What about your mobility, stress, cognitive ability? Do you know your treatment well enough to know what to expect if you do this or if you do that? Can you tell a big difference when you don’t stretch or workout?

For two solid weeks I have been extremely exhausted. Exhaustion to a frustrated level? My minimal routine ran off its tracks, derailed and left me to depend on everybody to do everything. Yeah, I understand that exhaustion is a normal thing and comes along with the territory but when something is off, and something is completely different, paying closer attention to all the details could make a huge impact.

For the past 2 weeks I’ve been so exhausted. Yeah you know the kind, can’t hold your head up, constantly falling asleep while watching TV with the family and not having enough strength to pull off a simple meal, because a full-course meal is out of the question.

Oh how frustrating it is to have a routine “as simple as it is” (to others)… but a way for you to get your exercise, your stretching and your simple chores complete. Then, the bottom falls out and you can’t get anything done. It doesn’t matter that you have some things that you can complete all by yourself. It does not matter that you feel achieved, or like a conqueror because you got that load of laundry folded. If these things make you feel like you’re contributing and you can get them done on a regular routine with multiple sclerosis you should feel like a hero. You should feel achieved and like a conqueror but then you can’t even do the simplest things. You have to resort to asking for help to do this and help to do that. It does have the potential to upset you. Upset you because you want to – but can’t. Upset you because you don’t like asking people for help. Or maybe upset because you fear it may be a relapse.

I kept saying,” it seems like every 5 to 6 months I get extremely drained after my infusion. I kept engaging my husband and children trying to put a finger on why I’m different after some infusions, than others. But why?? Is it something I ate? Did I not get enough sleep the night before?

I know about a year ago I realized that being stressed out or tired while on the day of your infusion makes a difference for me. So I made a note of it. I’ve had the same appointment for the past 6 years so I’m used to that. What I started focusing on is how do I feel when I receive the infusion? After realizing this I made sure that I am rested up and stress free walking into the infusion center.

》》》This past couple of weeks I had an infusion and then my bloodwork drawn 2 days later. So if I noticed that I was extremely tired about every fifth or sixth infusion, what in the world changes in my routine every 5th to 6th month. Hello, I’m getting my red and white blood cells, liver, and JVC virus testing complete every 6 months! I either need to expect this or change my schedule around so that the blood work and infusion isn’t within the same week. Who knows? I’m anxious to find out in about 6 months.

So are you paying attention? I want us all to start paying closer attention. Pay attention to what we put in our bodies. I realized after so many years of neurontins and painkillers, I still hurt. My body was still in saturated pain. I just couldn’t take it anymore. That was one thing I did not like. Now I do not suggest this for anybody else. We all know we’re not supposed to just stop anything without consulting our doctors. For me I just couldn’t see the value of paying for all those prescriptions, and popping pills to still hurt. So, I consulted God. I prayed, told him what was on my heart and what I really wanted. Oh yes in my relationship with God I talk to him as if he’s sitting in the chair in front of me. I knew that I needed his help to get through it. I do feel much better.

I challenge myself everyday to do better. This is the only body I’m ever going to have. It’s definitely not like a take-it-or-leave-it type situation. Though it would be nice to pack MS for a day wouldn’t it? To be able to take it or leave it behind at times? Y’all be blessed.

❤ Desmine

If only I had one day without multiple sclerosis…

Ever wonder what life would be like if you could go back for a day? I mean, to be honest with you, I think I’m beginning to forget how it feels to run. I wonder what it’s like to be able to jump, maybe even skip. Something tells me that if I could go back I would have the most fun with my children. In my heart I know I would be so juvenile, so giddy, quite silly. All the laughs, to be honest with you I would probably even cry. Though my youngest was learning the ability to walk while I was losing the ability to walk, I had to get real creative about play time with them. I must say I am the best zombie or monster out there. No one wants to challenge me in that particular department because I have had years of practice if pretending to be a zombie or a monster with something that is so natural for me to physically do. My children loved it. I may not have been able to run jump and play but boy the scary play we had with Mama walking around as a zombie, priceless. I’ve never been able to play with my two youngest in a free environment without fear of falling or hurting myself or them for all that matters.

Tell me what would you do? Those of you who have lost balance, strength, feeling in your hands and feet, what would you do if you had one day? If you had 24 hours to be your normal self, that self that you used to know. Would you just take off running? Would you turn flips and cartwheels? Would you paint a masterpiece? Would you play hide and go seek or tag with your children? Would you walk on the beach in the deep thick sand? Tell us, would you get on a stage and dance even if no one was there? Perhaps you would take to dancing in the street? Would you join a zumbathon class, run up and down the steps without holding the handrail while laughing with joy? Would you happen to stay alone or would you share it with the ones you love?  Ladies would you wear that pair of stilettos you just seeing online the other day? (I still remember the last pair I wore, the night, and where I wore them to).

I was an athlete, I am an athlete so I believe I would find a ⚾softball field and just run those bases, I don’t think I would stop I believe I would just run in circles.  I think I would want to hit and knock the ball out of the park one after another. It’s funny how I’ll watch TV and see people do some of the most amazing things and the first thing that comes to mind is well, they don’t have MS.

I do wonder how free I would be. To be able to walk without foot drop. Even on my good days I have the lagging foot drop that can be so annoying. I do wonder how it would feel to walk across a large room not worrying how close a wall is or if there’s a piece of furniture sitting in the middle of the room I can grab onto. I wonder what it would be like to go out in public and not use my cane or my rollator? Oh it would be so nice if I could go in public and not have to mentally  tag all the bathrooms  and memorize how many steps is going to take me to get there (on time). I just wonder what it would be like not to depend on anybody for anything. Not even to carry my plate. I wonder what it would be like to button buns without having to think? One of my biggest challenges is walking up steps without overextending my knees and locking my legs. That happens to be one of my daily workouts. I was just telling my doctor on Monday how hard that is. Wonder what it would be like to live and not have to concentrate about the things that I want to do. Like I watch my children and my husband just be, just be free. They don’t have to think about a thing when I have to think about every little thing I do. If only I had a day I would play with my kids like the world was coming to an end tomorrow. I would race them, challenge them.

I used to be an interior designer, so I wonder what it would be like to climb a ladder and measure two-story Windows again without worrying about hitting the floor. Wonder what it would be like to carry a 5 gallon bucket of paint?

I don’t know, maybe I would just cook a full course meal without anybody’s help and without having to stop and rest. I wonder what it would be like to clean my house from top to bottom in one day without having to stop and rest??

It would also be nice to just take a simple walk and not have to worry about inclines and declines, gravel under my feet and sticks lying around or without even getting tired. What in the world would that feel like?

I still have hope. Call me crazy but I still have hope. I have faith that one day maybe I can do some of these things. My vision is back from 20/400 to 20/20. (just had my vision checked on Monday). The feeling is back in my hands after 7 years. My sex life came back tenfold from the beginning of my diagnosis. So why in the world wouldn’t I believe and still have faith, you know faith in the one that I serve. I believe that one day I may be able to shout in church, so maybe I would call my pastor and ask to open up the church and have an emergency service? I want to do that. I want to be able to just let loose and just give God all the praise and the glory for where I have came from without holding on to the back of the pew in front of me. My praise is probably ugly to the human eye. I probably look a little goofy, quite strange. But I know God finds it absolutely beautiful!❤

There was a time it was not pretty. There was a time I had no faith no hope of getting better. I remember a time when I was a tender 30 years old in a wheelchair, blind, wearing depends without a driving privilege. And when I see where I came from, I realize there’s no room for sadness,there’s no room for resentment, or even pity. For I know I have a purpose in this walk, as rickety and weebly wobbly as it may be. I know I have a purpose in this here walk no matter how long it lasts.

I tell my children all the time I have no regrets because when I could do, I did it well and I did it to the best of my ability. So is there something for me in the end of all of this? Absolutely!! There’s something in it for me now. So watch me walk!

That’s what I’m here for. That’s what Step For Me is here for.

“Inspiring to step out on faith conquering strife while building inner strength. Encouraging others in stepping toward balancing a new Walk of Life!”

❤Desmine