Blog

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

 

 

Advertisements

I blog》 that does not make me a “blogger” ☆multiple sclerosis☆

I really enjoy writing my thoughts and experiences with you all. But I am not a “blogger”. I was diagnosed with multiple sclerosis in 2010. I had just given birth to to two children within 18 months of each other. My baby girl was only 8 months the first night I remember having vivid symptoms. It was the Sunday of Black Friday. Family had just been to the house and celebrated Thanksgiving. My husband, daughters and I left for Charlotte, North Carolina from Galax, Virginia to look for a house. I had missed Charlotte and desired to be back.

When we left out early  that Friday morning, I left my house one way but when we came back on Sunday evening, I was different. I had told my husband that my legs felt funny, heavy even.  I could tell by the look on his face that he was concerned. For we had already had friends and family who had a fight with multiple sclerosis. Some loved ones quite close to us. He said to me, “Alright baby I’m going to get you some Aleve you go and get ready for a bath I’ll run your water. Maybe that will make you feel better.”

I must say my legs have never felt the same since that night. That night marked the beginning of the rest of our lives.

I don’t know if I’ve ever really introduced myself before. I do feel like I have a purpose in my story. That would make me “what I” call a Multiple Sclerosis Warrior Advocate. I choose to share my story. Although, I don’t know how I expect to do that when at the same time I’m a little nervous about being the “face” of Step For Me. Because it really isn’t about me. It really is about you. I want to help you, hence the Title “Step For Me”. I do want to be the voice for you and let the world know that we need help. We need friends, family, we need the public to understand how we live. The difference in our story is we weren’t Born This Way. So at times it can get overwhelming remembering how we used to be and how now we can’t be. It’s hard. It’s a very difficult life. I choose to use it for my good. I choose to learn from our struggles and make a better me out of it all. I don’t know, I guess I try to be strong when others can’t be. And with the God I serve, I know I can be! 

I do want the small amount of readers I think I may have to give me feedback. I am trying to build something for you. I need your input. The reason I want you to understand that I am not a blogger is when you don’t see me blog for a day or two (okay let’s be real sometimes a week) doesn’t mean that I’m being lazy or that I had forgotten about you. I’m actually working on other things for you. Keep in mind I am a wife and a mother of three in the house. Remember I am physically slow. It takes me a long time just to get household things done. I am trying to manage an Instagram page and 2 to 3 Facebook pages Twitter,…Plan events, remind you that I’m available, all while designing programs to make our lives better. I could use your help! We have a Facebook Chat page called. Friends who like Step For Me. I invite you all to that page.

There are some things I would like to get done and that is the best way to get your feet back. Chat, ask questions, involve you. I felt with my diagnosis that there were some things I needed that was missing. I did wonder if there was anyone else who felt the same way. For instance in the beginning of my diagnosis we tried to figure out the best things for us, you know the best course of action. At the time, I had a prescription for Solu-Medrol but I didn’t have the funds to administer the drug. I looked and I searched. I found a place that had funding to help me administer Solu-Medrol. This is what motivated me. Because I didn’t have cancer and my disease was multiple sclerosis. They couldn’t help me. That made me angry that made me so upset because I felt victimized. I was a mother and all I was doing was trying to get help to get one foot in front of the other to help raise my children. It got to the point that my doctors wouldn’t even give me steroids (pill form) anymore. So I was stuck. Stuck and angry, angry and stuck, stuck and trapped, trapped and stuck….there was no way out. I felt like my children were being punished, but what about my kids. No one seemed to care. No one seemed to care about my husband. He was a truck driver. We’re actually owned a business at the time of my diagnosis. Are you kidding me what are we going to do? So that’s why we’re here. We are here for you. So let’s make life better for all of us together.

❤ Desmine

 

Multiple Sclerosis, colds, the flu and YOU!!!

As if our strength, immune system and daily obstacles are not enough, here we sit in the climax of cold and flu season.  No matter how hard we try we still get attacked and contaminated with germs.  As clean as I try to be with Lysol and Clorox in the house, the germs won and took over my family’s comfort. With a husband and 3 children in the house I realize, I’m just fighting to be fighting. Unless I can have Lysol automatically mist the house kind of like how the grocery stores mist their produce, I’m just going to lose.

“Girls wash your hands, girls grab the hand sanitizer, girls cover your mouth.” Who am I kidding? I could sit in the house for a solid week and never even walk outside but that will never stop me from getting sick. I’ll sanitize the house, has it guarded, armored and ready for battle when the kids walk through the door but…

The thing is with five people in the house it seems to take forever to be rid of what we get. At some point you just gotta laugh at it.  Forget the fact that you try to prepare for this season internally and cook and prepare foods to help boost your immune system. Yeah we all know the foods that work or supposed to work but as you’re fighting the fight and going through it, it feels like nothing’s working.

My main concern is staying healthy without relapsing. Relapse knocked on my door this past week. I can’t tell you how scared I was that I could not walk, could not feel the bottoms of feet, had no strength whatsoever. I had to resort to depending and leaning on my husband to get to the bathroom, to get in the bed, to shower, and he even had to bathe me. I HATE THAT! Not that he ever minds, I just want to do it myself. I have been there where I couldn’t. It wasn’t just day-in-and-day-out it was week-in -week -out and month-in- month-out! I KNOW WHAT IT IS LIKE TO BE COMPLETELY CARED FOR WITHOUT ANY OTHER OPTION! IT IS NOT FUN! Reality is that it comes with the territory of multiple sclerosis. The question is how do you come out in the end?

Again I can’t stress to you how important and dedicated a caregiver team is to your well-being. I know I’m blessed and I try hard not to take it for granted so when I’m down, my heart really goes out to The Warriors who don’t have live-in caregivers. Honestly, I can’t imagine how I would have made it this weekend without my team. I guess that’s why I work so hard with this organization.

There should never be anyone alone and scared of the changes in their body but I can tell you I was there. When I tried to get up out of the chair and I couldn’t feel the bottom of my feet and my legs had absolutely no strength to pick my body up, I automatically went to the worst thought imaginable. As I was crying in panic, venting out in fear of a relapse, I kept saying, “I’ve been here before baby, we’ve been here before.”  I don’t know what my husband was thinking “really”, he had a way of keeping me focused though. As he helped me toward the bed and I looked at that “dark valley”, it looked like such a long long walk. I want that was treacherous and Haley a walk with obstacles all around. All I could do was just Chant… yay though I walk through the valley of the shadow of death I will fear no evil for you God are with me!  The more I spoke it the more I believed it, the more I believed it, the closer I got to that bed! I do have my strength now, but it’s consistent work at getting there.

Let’s be clear I understand that not everybody is going to believe the way I do, serve the God I serve but I can promise you it works for me. I strongly believe that believing in something is key to staying on top of this disease. Because when you get scared like I did this weekend and you have nowhere to turn where do you go? If you don’t believe in something if you don’t believe in someone, where in the world do you go???

I’m only human and I don’t want any of you to think that I’m perfect or that I don’t get down and doubt myself because I do. I don’t want anyone that thinks that I never see a hard day or that sometimes I don’t FEAR… only the God I serve keeps me from such fear for long. I can tell you this weekend I was scared. Scared of not being able to walk after all the work I’ve put into learning again.

I CAN say that I’ve been taught, I’ve been conditioned not to live in the “spirit of fear”. So when you take a moment, breathe, and remember who you are and what you believe in. I can promise you the rest will come. Stay strong, be well, be blessed!

❤ Desmine

Let me be clear about “my” Multiple Sclerosis story!!!

” Dear Heavenly Father, Lord I ask you to go before me as I write this blog. Speak for me as I am reminded to be wise as a serpent gentle as a dove. Matthew 10:16 Amen”

I AM A VERY SPIRITUAL PERSON!  So much so that one of the most rewarding highlights of my day is when I praise God. I built this organization with the help of my husband and children with a determination to set out and walk out my assignment given to me by God. It doesn’t matter to me if you believe in “My” God. It means more to me that you believe in “something”.  I have full understanding of what my assignment for this organization is because it came straight from God. Now you may choose to believe that or not that’s up to you. He even told me what it is to be titled.

My job is simply to walk out this walk of mine as weebly as it can be. My healing comes as God sees fit and there are hundreds who have walked with me for 7 years and know how far I have come from  being bedridden for several months, blind with Optical neuritis that is no longer “medically” there, to being able to feel my fingertips to this week losing the numbing in my hand that’s been there for over 7 years etc.

I admit it does sound a little bit unbelievable, but All truth Here, I don’t play with God. He doesn’t play with me.

It means more to me that people are inspired by my story. I’m under full understanding that my type of “Faith Walk” can be unbelievable and downright controversial at times. But that’s perfectly okay to be a true warrior of God that’s what happens. The fact that someone comes to a “FAITH BASED” NON PROFIT ORGANIZATION having DISBELIEF and lack of faith is exactly what Step For Me is founded on.  You are welcome hopefully while keeping in mind that our mission is unchangeable and I refuse to apologize for what I believe in just to make someone else happy or comfortable. My job is to shine like I do everyday and touch the spirit of those struggling the most. Every month I walk into that infusion center for my treatment I’m smiling to make sure I’m approachable. Doesn’t matter how much pain I’m in or how bad I walk that day. I feel like a smile on my face can make somebody else’s pain better momentarily.

Here at Step For Me our MISSION is inspiring others to step out on faith conquering Strife while building Inner Strength while helping others step toward balancing a “New Walk of Life”.

…. so the God I serve gives instruction, I follow, He does the rest, meaning… I, Desmine lift Him up and He said He would draw all men to Him. For me it’s that simple that’s what I BELIEVE. I invite all to think outside of their daily box and rely on a higher power that has the ability to change your life around. I no longer take any of my MS meds other than tysabri. I don’t take Lyrica, Cymbalta, Gabapentin, Sertraline… all of which I have taken until one day I just got tired of popping pills. I had broken my leg so all of your drugs I was already taken for multiple sclerosis on top of all the drugs they gave me for my broken I was my Breaking Point. I went before God wholeheartedly and I said, ” Lord if you could just maintain my pain without these drugs. Popping pills is not me and I want to stop taking all these pills”.

So when I told my  neurologist who is a MS Specialist that I had stopped taking all my pills and then I felt better. She said okay Desmine if that’s what you want to do but you will not be coming off tysabri…deal made. I have not filled any prescriptions for neurontins in over 2 years. Again, “my faith walk”.

My story should be unbelievable for I serve an unbelievable God!🤗 Just remember you are always welcome on facebook page, my website, my YouTube channel, twitter… no matter how much you may not believe. That’s what we’re here for. Be blessed.

❤ Love, Desmine

 

Multiple Sclerosis happy v/s Multiple Sclerosis Miserable

Rather you realize it or not, you have the power to determine your multiple sclerosis outcome. I know what I was diagnosed I kept hearing multiple sclerosis is a “mind over matter” disease. At the time I was much younger extremely optimistic and determined to get the best out of the situation.  I knew I was in for a long bumpy ride for I had a  close family member who was diagnosed before me. Thing about it is I already knew what “my” diagnosis was before I was medically diagnosed.

I already knew all the symptoms and the signs going through the diagnosis with a loved one prior to my own symptoms I believed was ordained. I can’t explain to you how many times I argued with countless doctors over what I “knew”  my body was at war with. REMEMBER, NEVER LET ANYONE TELL YOU THAT YOU ARE FINE WHEN NO ONE KNOWS YOUR BODY BETTER THAN YOU!🤔 I had lived the fatigue, the pain, all the changes living with MS before it started happening to me supporting a loved one’s fight.

Now I’ve always said you have two different types of MS Warriors.

1. Advocate MS Warriors

2. Closet MS Warriors 

There’s absolutely nothing wrong with either one. We all can pick and choose if we want to share our pain and suffering, others would rather keep it to themselves. For me, I must talk about it, I must fight for it, I must ask questions, I must explain it. Only because that’s what makes me feel good, I choose to advocate for multiple sclerosis. I choose to share my experiences, my family’s experiences. My happy.

Keeping my experiences, pain, obstacles to myself only makes matters worse. MY BODY IS ALREADY TRAPPED WITHIN ITSELF. Why in the world would I hold on and keep all of what I’m going through “trapped in” with what I can’t change. I can’t change my diagnosis but I most certainly can change the outcome. So I choose to be ” happy” because “misery” and I do not get along. It’s just not enough space for misery and I. We produce conflict together which bogs me down. It gets weighty like bricks on my shoulder. And we all know we can’t afford any more weight than we’re already dealing with.

Sometimes people can make you miserable as well. Make sure you’re not surrounding yourself with such shenanigans. People can change your health outcome. Don’t let them in.

I was explaining to my youngest children yesterday that every little thing I do I have to think about. From picking up a penny, to buttoning a simple button, to completing three steps without falling. It’s War out here for us. Make it as absolutely pleasant as you possibly can. Misery can become routine without even realizing it. I realize and I understand and I am walking this walk right there with you.

But I beg of you to change your surroundings if you find yourself in misery more than happy. There are too many physical support groups, social media support, events to be miserable. That route is detrimental to our health. Be blessed.

My bag of happy consists of…

1. The Holy Trinity

2. Supportive husband and children

3. Laughter

4. I suggest an MS specialist. Not just a general neurologist. There is a huge difference.

5. Regular communication between you and your caregivers, family.

6. Supportive church family

7. Lots of sex

8. Exercise of course is important but stretching for me periodically throughout the day is more beneficial.

9. I hear cannabis is like gold vapor for your nerves. CBD oil like gold liquid to your joints.

10. Positive attitude, even when you pee on yourself, spill something, or fall laugh about it and dance (well my dance is more like a bounce). 😄😄😄

❤ Desmine

“Twas the morning of Christmas, when MS quietly screamed loud”

At 6:54 a.m. I hear a knock at the bedroom door, there was giggling and chatter, realizing I had been here before.

It was Christmas morning, time to give thanks to the Lord.  As I sleepily started to smile, I found comfort in this feeling – that only happens once in awhile.

Brushing my teeth I asked myself, “have my children remembered to say “happy birthday Jesus”…, even though they’re excited about their presents because it’s Christmas?…

As my children were under the tree opening their gifts, I couldn’t help but notice that I kept feeling my “fingertips”.

We all know with multiple sclerosis it’s easy to get agitated. The more I tried to concentrate on my children, the more I became aggravated.

As my mind was discombobulated I tried hard to sort through the loud giggling, wrapping paper clatter, mixed with all the exciting chatter, I tried to figure out with me, what in the world was the matter??

Understanding this was a symptom of MS, I started to get stressed, for I was happy, it was not the time for me to get all upset.

As I tried to get it together, I suddenly couldn’t help but notice, Just how quickly I was beginning to lose focus.

I looked again down at my fingertips and realized, I could feel the ridges, the texture from my fingerprints.

As a family, we were so gratful, for it was Christmas morning, we were already so joyful.

So we’ll continue to praise Him for I will never forget this Christmas gift…. I promise if you just believe, sooner or later you will  fill a “shift”. I am so blessed because today  I am able to feel my fingertips.

…. I haven’t felt my fingers in six or seven years, we’ve praised him and thanked him, we couldn’t think of a better Christmas gift “this year”!

 

 

That deep multiple sclerosis “CAN’T KEEP YOUR HEAD UP” kind of sleep!

I am certainly enjoying this new “can’t keep your head up kind of sleep! I must say, I’ve been missing out. It is so unusual for me to get the kind of sleep that I’ve been getting. My particular multiple sclerosis sleep is practically non-existent. I’m in the “MS Zombie” group of those who live life without quality sleep because we are constantly fighting our bodies. Let’s face it our bodies are at war. Fighting spasms and tremors with the constant moaning and groaning, not to mention the Restless Leg Syndrome. My sleep is so bad at times my husband actually feels guilty sleeping and at times has to wake me up out of my sleep  to help me find a more comfortable position. You know that’s crazy but very normal for a lot of us! I’m constantly reassuring him that it’s okay to have a headache or get sick.

I’m not going to sit here and pretend that his good sleep doesn’t downright tick me off at times, not mad at him but very upset with the situation. How easily it is for him to fall asleep  when I’m doing it everything under the sun  to catch any kind of sleep because I can’t usually take naps either. I can be grown enough to say I pout sometimes because I’ve tossed and turned for hours, beat my pillows flimsy, all while praying that I get some sleep. The worst is every time you look at the clock and it’s 45 minutes later than the last time. Not to mention the many times I wake my husband up out of his sleep so he can….you know, put me to sleep. (I must say sex puts me right off to sleep every time but then again, I feel guilty for waking my husband up all hours of the night “too much”. His rest is important for work, even though he doesn’t ever seem to mind.

…but the sleep I’ve been “consuming” this week has been amazing. I can tell you I’m moving better this week. I’m not as stiff as usual and the free movement in my joints is quite nice as well.

What am I doing different you say??? Well, I started taking a supplement.

https://www.walmart.com/ip/Spring-Valley-Tumeric-Curcumin-Complex-Capsules-500-mg-90-Ct/46342034

Turmeric curcumin complex by Spring Valley is about the only thing I’ve been doing differently. I do seem to move these heavy legs a little more easily. My 16 year old daughter had me arm and arm last night and sad, “Mom you seem to be walking much better”. That meant the world to me to hear that from one of my caregivers that sees and notices everything sees a difference.

I do struggle with foot drop on my left side and for the past 2 weeks I do seem to get around more quickly even when I’m  out by myself. As far as my pain goes, it seems to be easier to tolerate as well. Although I’m not naive, better sleep makes your life better in multiple ways. Do I believe all this extra sleep could contribute to my quicker more steady gait, less pain and better mood because I feel better? ABSOLUTELY!!!

From a health aspect, I do recommend trying this supplement if you don’t already use it. Anything is worth a try if it can give you a better quality day and then when you add a couple of good quality days they add up to a good week then a good couple of weeks. You may hear from your loved ones that they see a difference.

I have a video about  turmeric and cumin  already  on our YouTube channel. I have tried another brand but so far I like this one better. I hope I’ve made you curious enough to try it it’s worth it.

♡ Desmine

 

 

 

Sometimes you have to make fun of MS…

Sometimes you just have to make fun of multiple sclerosis! Even though you’re going to cry about it make sure you make room to make fun of it. Laugh at it! It’s good for you to laugh at your situation.

https://m.facebook.com/story.php?story_fbid=10215609645018221&id=1353757697

Continue to support each other. It doesn’t matter if it’s spousal caregiving, family caregiving, or even a paid caregiver. Consistently supporting each other is so important. We couldn’t do it without each other and it’s takes both parties to make it as successful as possible. Remember that it should never be a give-and-take that it should be a given receive relationship! (my husband and I have lived by this for 15 years).  I do realize at times we’re not always as cordial as we should be, so apologize when necessary. Communicating is crucial. When you do not communicate well with one another that allows unnecessary attitudes to hinder your day. And as Warriors and true caregivers we all know the last thing we should do is stress. Try making your environment positive rather it’s inspirational music, working out, or resting remember to leave yourself enough space. Space meaning allow yourself plenty of time to rest when needed. Don’t over exert yourself, that allows more stress and fatigue which opens the door for injury. And for today compliment yourself and each other. Allow yourself to let each other know how much you appreciate each other. A little appreciation always goes a long way.

♡ Desmine

Do you “fear” of switching treatments?

In my absence I’ve been sick a few different ways, my children have been under the weather all while trying to put together an event for this organization.

In the midst of my absence I received a message about switching to tysabri. The treatment I have been blessed with for going on 7 years now. This treatment tends to make many people apprehensive. Trust me my husband and I were there. But we had to ask ourselves at what cost do we not try the drug when my body is deteriorating so quickly?? At some point you have to start asking yourself what is your life worth? If your body is failing on the treatment that you’re on I do suggest switching treatments.

I too was recently in the same situation I still contemplate from time to time rather to switch my drug. Yes, tysabri works for me. Even though I still move slow, I cannot run, hey I can’t even jump, but when your neurologist, your husband and your children make you realize that you have made progress on the treatment you reconsider.

It may not work as fast as I want it to. It may not be as impactful “over night” as I want it to be, but when you measure the state I was in when I started the treatment compared to now I realize I’m an athlete in my MS community. My vision went from 20/400 to currently 20/30.  I’ve only filled my prescription once in 6 years and I dont even wear my glasses anymore. I may not be able to jump,  but to be able to stomp your feet while standing after being in a wheelchair for 6 months is major progress.

NOW I’M NOT ABOUT TO SIT HERE AND PRETEND tysabri fixed all these things. As we all know I’m a very spiritual person. With that said it upsets me to hear people say that they “fear” their treatments.

Stop right there! You should never “FEAR”! Fear and faith do not work together. But having faith wholeheartedly has to be taught. Yes, it’s absolutely okay to be apprehensive about making the right decision. Yes, it is perfectly okay to have questions or to be confused. But there is a line.  It’s a thin line, but there is a line. These drugs they give us are intended to “slow down progression”! I am teaching myself right now to not be so quickly to jump to the new drug just because it works for some. If your current drug is not helping you make progress, then by all means shop around. THE THING I’M STRUGGLING WITH IS, IN 6/7 YEARS I HAVE NOT HAD A RELAPSE. SO I KEEP GOING BACK AND FORTH WITH THE IDEA. I MEAN I REALIZE IT MAY BE SILLY TO SWITCH DRUGS JUST BECAUSE OF THAT ONE FACTOR… but if I do decide to change I will be prayed up and sure that God and I have the same understanding and that understanding is… He’s got me, no matter what I choose. Now that, my friends, is the faith I live by. I have to because these legs of mine, they’re very heavy but I have 3 children to get up and get ready for school EVERYDAY!

Remember “Mom first -MS, take your seat”!

See everytime I choose to go out and interact with the public. Rather they are people I know, or complete strangers, I always get the same question…..How in the world are you always smiling??? Oh that one’s easy. My faith! My faith! MY FAITH!

People see me struggle with my own balance. People see me fight to get my left foot up as I walk. People see how quickly I get tired. They also see how I refuse to give up because I know that “his grace” is sufficient for me! Have I fallen, bumped my head, burnt myself, broken my leg, all due to multiple sclerosis? ABSOLUTELY! I choose to use every single accident as a learning opportunity, you know, (what not to do)! I use these experiences to help others coming along with the same struggles that I’ve been through. My husband gets messages, I get messages on the simplest things. How do you deal with this? How do you deal with that? Lord, I’ve learned that I always thought I was born to be an interior designer. I did that. I enjoyed it. Oh and how much I miss it. But there came a time when I learned that, interior design was not my purpose. Even though it was a ‘service and I helped’ people enjoy and love their biggest investments oh, I must say the satisfaction I get by answering these little questions and helping people from my experiences is so much more rewarding.

Even though I wonder what it would be like to go out here and race with my children. Play volleyball salt and pepper with my husband, while our children play at the park. Oh how I miss the batting cage. He used to take me to the batting cage all the time. And dance, oh my husband can dance and we used to go dancing. We still dance a little bit differently but to go out in my stilettos, looking all grown and sexy with the love of my life…. We choose to take all of that we used to have together and apply it to what we have now together. That also takes a certain level of faith.

” even though Desmine may have to walk down that extremely dark, winding, steep treacherous valley filled with doubt. I’m going to choose to Not Fear, oh because I have a choice. Because I know at the end of the day he is with me…Psalms 23

It’s that simple, put your name on it. Kneed it, massage it, customize it to suit your situation.

Be blessed. Love, Desmine

 

The Respiratory Yuck..

As I start this week full of turkey and happy as I can be, I must say I’m still a little tired over fighting bronchitis, an upper respiratory infection, all the above.  I have been fighting what I now realize is becoming familiar territory for me. My family and I sit and chat about the things I go through and the more we talk about it we realize that this is familiar to us. Not only did I just fight this in the spring, it decided to flare up again in the fall. NOT FUN!

I must say the threat of respiratory issues was a red flag for us and one of the determining factors of not switching from Tysabri to the Big O. After being on Tysabri for almost 7 years, we realize it’s becoming a habitual side effect with the treatment I take now which is Tysabri. Going to discuss the new treatment with my neuro and the reasons why or why not to switch made us realize that one of the side effects that made us choose not to switch is something that I’m already dealing with. We have already decided that in March, April, October and November I have issues with breathing. I’ll start taking breathing treatments, take allergy medicine daily and wash my hands more and be mindful of my surroundings in public. I’ve got to remember that my immune system  is already challenged. Makes me wonder is that a side effect of Tysabri too? Is it just me? Should I definitely stay away from the Big O? So is upper respiratory issues just a side effect of the Big O or is it just multiple sclerosis treatments all together? I’ve never had problems breathing before. I never had an issue with not being able to breathe or not being able to do things because of it.

Oh multiple sclerosis and all of your challenges. It’s almost like trying to determine if some of the issues you’re dealing with is just the fact that you’re getting older or is this a new multiple sclerosis symptom? Is it a new sign of a side effect of the treatment I’m taking? Am I going crazy? Does anyone else deal with this other than me?

I’m frustrated but I’m strong, I’m a soldier, I’m a warrior! I’ll get through it like I get through everything else. I’m going to read my Bible get my Bible study out of the way. Listen to my gospel music, keep stepping, make some more phone calls and continue to build this organization for you!

Remember that tomorrow is Giving Tuesday. Step For Me is already grateful for all donations. Step For Me uses donations to help implement service programs we are pushing through. Some programs help with prescription assistance, copay assistance, sleep studies, and children’s programs for multiple sclerosis.