MS Strong

I’ll remember that phone call most likely all my life.

The one that stabbed into my heart and stuck there like a knife.

I woke up with no feeling in those fingers and my toes,

With no idea what havoc those small symptoms could expose.

 

You see them in the movies, or hear about them in a song,

Those moments when your ‘normal’ ends and the seconds just drag on.

No one can prepare you for that moment, for that day

When you find out that you’re sick, and it will never go away.

 

I first react in fear and panic, in shock and disbelief

Numbly listening to the doctor, my hands shake, why can’t I breathe?

It’s “indicative of MS”, “ok”, “do you know what that means?”

“No, not really.” My voice shakes, my heart is racing, please help me.

 

Multiple Sclerosis is what the doctor then explained.

All I heard was that it was in my spine and also in my brain.

Something in my body wasn’t right, was really wrong.

It’s funny but looking back, it had been that way so long

 

I held myself together, saying “everything’s alright”,

Until I broke down in the shower later on that night.

My husband sat beside me, as we cried there on the floor,

Knowing that from here on out it’d be so different from before.

 

We were right, and things have changed a lot in half a year.

MS has put some things on hold, like having a career.

It’s hard to work when you cannot stay awake

And the slightest change in weather makes your whole body start to ache.

 

But It hasn’t all been bad, these lessons that I’ve learned.

I’m proud of all my bruises and battle scars I’ve earned.

I’ve grown, and I am learning to live in the moment every day,

To connect to life around me, and let my heart show me the way.

 

I married my best friend on a cold night in late November

A night of love and family that we always will remember.

Those around us showed support and an avalanche of love.

Love is something this disease can never get rid of.

 

I faced some of my hardest nights, have felt so vulnerable, so scared,

But I learned that when you learn to ask, someone always will be there.

Some days I feel my weakest, and some days I feel so strong.

Some days the world feels right and some days everything goes wrong.

 

I will continue on this journey, I will continue on his fight.

I will use the gifts I’m given to spread awareness and shine light.

We’ll find a cure and I’ll keep singing my fight song.

Do you feel as good as I do now?

Because this is MS Strong.

How do you beat the heat?

Many people with Multiple Sclerosis suffer from heat sensitivity. Heat can actually cause symptoms of MS to temporarily worsen, recreating old flare ups! Doctors believe this is because the increase in body temperature causes the damaged nerves to fire even less effectively. Similarly, when someone with MS get’s a fever from an infection they can sometimes have a “pseudo relapse”, where old symptoms will flare up but then go away once your fever clears up. It only takes a couple of degrees increase to cause a whole world of issues in an MS’rs body.

For me just an hour or so in the heat can leave me feeling severely fatigued, nauseous, and I lose feeling and have numbness/tingling in the right side of my body. But I LOVE being outside in the sun so much! It’s great for my mental health, as well as the fact that I could use the vitamin D (I am also severely vitamin D deficient). I’ve developed a few tips and tricks to keep myself stay cool in the heat. So I don’t have to totally give up my time with my plants and dog outside!

  1. Stay hydrated. I always try to drink a lot of water, but when I know I am spending time in the heat I make sure to drink extra! I also pretty much never leave home without my water bottle anymore 🙂
  2. Take breaks. I try not to stay out in the direct sun for very long at all. Even if I am in the shade, and the temp is really hot, I make sure that I take frequent breaks in the air conditioning to make sure I don’t get too overheated.
  3. Sunscreen! I have a newly found passion for skin care. The two golden rules I have found are MOISTURIZE and PUT ON SUNSCREEN! Your skin will thank you!
  4. Stick to the shade. I try to adhere to this as much as possible. For example, yesterday when my husband and I went out to lunch we asked for a table on the patio but not in direct sunlight. We had to wait a little longer for a table, but the restaurant was happy to accommodate!
  5. My neck cooling “towel”. I got a cool little cooling device at this year’s Walk MS: Twin Cities. It’s basically a tiny scarf that you stick in the freezer and it get’s (and stays) nice and cold! I love to slap that baby on when I am gardening or reading outside!

 

Do you have any tips or tricks for staying cool in the summer heat?!? I would love to hear them!

Stay cool my friends 😉

-A

Birthday Weekend: Day 1

First things first, today marks the completion of my first week of Glatiramer Acetate injections. It was also a rough injection day. Maybe I wasn’t paying as much attention to what I was doing because ‘hey, this is my third time doing this in five days. I’m an old pro at this right?’ No, I am not.

I injected into my upper thigh today, as was planned in my “injection rotation planner”, but I must have had the depth setting too high because I ended up injecting into my muscle. Glatiramer Acetate is meant to be injected into the fatty layer before the muscle, and let me tell you, there is a reason why! It hurt like a mother trucker.

It didn’t help that I could not, for the life of me, find my heating pad this morning. My brain fog has me getting seriously forgetful over the past month or so. The other week I put ice cream in the fridge and didn’t know until I looked for it the next day only to discover that my ridiculously overpriced $4.99 gluten free, dairy free, soy free, nut free “ice cream” was now a lumpy sludge in the fridge. Shame. But this thing is LOST. My husband and I spent a good half hour scouring every corner (and yes, I looked in the fridge) for the hot pack and is nowhere to be found. And I literally used it two days ago!  I’m sure I’ll find it in some random place eventually

…unless it was stolen…I am looking at you Sparrow Mom.

Luckily, my husband was there to carry me to the couch and help me apply pressure and ice on my leg until the pain subsided enough for me to be able to crack a smile at some silly joke he was saying to try to distract me. And it worked, with his comfort, terrible jokes, and instant and caring reactions we got through my first injection stumble. I’m a lucky wife.

In other news, turn 25 on Sunday! I am so excited for this weekend. I have always loved birthdays. I love looking back at the past year and seeing how I have grown, how my life has changed, and the lessons I have learned. I love looking forward and the excitement and wonder of what another year will hold. Birthdays just make me happy. They celebrate life and all that comes with it!

My life has changed A LOT in this past year, and I can already tell that this weekend will not just be a regular birthday. This year I feel like I am feeling everything a little bit more. More love, more joy, more nostalgia, more gratitude for what I have; an amazing family and friends, my husband and even the medicine that I have access to that is giving me a chance at my new “normal”. My heart is dancing with all of the good vibes I am feeling today.

To start out my birthday weekend I would like to share some things I am thankful for in this past year.

  • I am thankful that my husband and I found a perfect neighborhood and home to establish our roots in.
  • I am thankful that even in the darkest times, just after my initial diagnosis, I learned an extremely powerful lesson. That no matter how much darkness is thrown at you the light of love will always shine through brighter.
  • I am thankful that the man of my dreams finally asked me to marry him 😉
  • I am thankful that I have been able to focus so much of my recent time and energy on getting healthier both physically and mentally.
  • I am thankful for the immense amount of support and love my family and friends, and even strangers, have shown me since my diagnosis of Multiple Sclerosis. Every single person who has reached out, prayed, walked in this years Walk MS: Twin Cities with “Dumbledore’s Army”, donated, sent good vibes or shared my story and MS awareness with others. I am thankful for you!

 

-A

First Injection Day: √

Today was the big day, injection training! For those of you who have read my blog before you know that I was recently diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). Since my diagnosis I have had a lot to wrap my mind around. As someone who suffers from some pretty intense anxiety to begin with, it has been…challenging to put it kindly. But one thing that I have been working up the courage for was beginning a disease modifying drug.

Disease modifying drugs work to slow down the progression of MS. There are various drugs (I think 15? currently on the market in the US) that can be used to slow the progression of this disease. These drugs range in effectiveness, risks, and the methods in which they are administered/how they work in the body.

There is no cure for Multiple Sclerosis. There is no way to undo the damage, if permanent nerve damage has already occurred. One of the biggest misunderstandings I had (and I think many people would have) about the treatment I am starting is that it does not make you feel better. It doesn’t really alleviate any symptoms, rather it gives your immune system something different to attack rather than your own myelin (protective covering of the nerves. Think of someone with MS as having a cellphone charger with the wires exposed). The hope of this treatment is that it will slow the progression of my disease and delay my next relapse or attack of symptoms, maybe by months…maybe by years!

The treatment I chose to start with is Glatiramer Acetate (the generic form of Copaxone). Glatiramer Acetate has minimal side effects, mostly confined to the injection site and does not cause long-term damage/risks to the reproductive organs. This was really important to me. I have already lost so much to this disease, I didn’t want to risk losing my future family too. So I wanted to try this less aggressive, albeit sometimes less effective, treatment option first. This drug is injected into the fatty layer under the skin either daily or three times a week, depending on dosage.

I’ve been trying to wrap my mind around giving myself shots for a while now (pretty much since I started researching treatment options last fall) and have been rather nervous about it. All it would take was the image of myself pushing a needle into my own tummy and my vision would go dark, hands and feet go numb and the room starts to spin (funny, those are all MS symptoms too! Yay anxiety, double the fun for me!) I tried to comfort myself by reminding myself that I would be thoroughly trained on how to safely inject, I would have my husband to help me if I really was that squeamish at the end of the day, and that when it comes down to it I could just inject in other body parts that made me feel less freaked out.

But all the self soothing in the world couldn’t keep that bossy voice of anxiety from running her mouth in the back of my mind.

But this morning came, and so did the nurse to show me how to tackle my newest MS challenge.

I just have to give a shout out to my nurse, who did an absolutely amazing job teaching me everything I needed to know and making sure I felt comfortable and ready to give my self my first ever injection.  And that is just what I did, and in my tummy no less! I decided that if I am going to face this fear I am going to face it head on!

It wasn’t too bad! The injection itself just felt like any shot does. There was some pretty strong stinging and burning for a few minutes after, while the injection spread, but it passed within a few minutes. As I write this, the only indication that I had such a life changing morning is a slight ache in my abdomen and a tiny dot where the needle went in. That’s it.

It’s funny. There are many moments when our lives change forever, and they pass without us even realizing them. Moments when we fall in love, take a stand or face a challenge. Sometimes they’re big, sometimes they are small. As small as pushing a button and a tiny needle injecting you with not just a medicine, but hope.

Hope that this disease won’t progress. Hope that I’ll have many years of health ahead of me. Hope that I’ll grow nice and old and have a family of my own to watch grow up too. Hope that one day I can look back at this time of my life and be proud of the bravery I showed, even when I felt like hiding. Hope that one day we won’t be on here talking about a treatment, we will be talking about the cure.

Until then, I will continue to learn each day, to cherish the peaceful moments and to fill my heart and the hearts of those around me with as much love and positivity as I can muster.

-A

“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” – Albus Dumbledore

silhouette photo of trees during night time
Photo by Miriam Espacio on Pexels.com

One of these packages looks more fun than the other…

I love the mail.

I love receiving letters in the mail, I love sending them. I love getting packages in the mail and opening them up, sending care packages to people! Yes, you have to sift through some junk to get to the good stuff sometimes, but isn’t that the same in everything in life!

As an adult I started getting more of “the junk” in the mail. Bills, advertisements, ads for stores I’ve never even shopped at. But I also started getting some fun stuff too! I get wedding invitations, baby announcements, Christmas cards! That’s kind of how my life has been lately. I’ve started getting a little more of the crappy stuff (MS diagnosis, intense anxiety etc) but I’ve also started getting a whole lot more of the wonderful stuff (a husband, a supportive family, a house and a goon of a dog).

For my birthday this year my husband got me a subscription for Ipsy. I am really excited to try out some new beauty supplies each month! Since my diagnosis I have been struggling with the way I view myself. I lost a lot of weight (not intentionally), began having the worst acne of my life (seriously, this shit makes my teenage years look like beauty marks!) and for a while, when I was feeling really sick, I just kind of gave up.

I have always enjoyed makeup and beauty products, getting my nails done and all that jazz, but this winter I was so preoccupied with the shock of my diagnosis that I fell into a no bra, all day pj wearing, throw my hair into a nest of a bun at the top of my head situation…like Sparrow Mom was considering my hair prime real-estate at one point…

Now don’t get me wrong, there is NOTHING wrong with no bra, all day pj’s and having a tangle of hair fit for housing birds and other small creatures on the top of your head! I love those days. That still is me most days.

In fact, the only reason I am not wearing my pajamas right now is because I had to drag my butt away from my Harry Potter marathon and run some errands today.

I am totally supportive of rocking whatever look makes you feel good! The issue was, I was starting to not feel good about myself. I read a post someone wrote about depression and getting yourself out of a tough patch and one of the tips was “Have you showered today? If the answer is no, go shower. Right now.” It really made me realize that I was feeling crappy about myself on the inside (still coming to terms with the fact that a part of my body was attacking another part) and was letting anxiety and negativity control my life so much that I had stopped doing some of the basic things that made me feel good.

Again, I come back to the power of our thoughts and intentions. One small thing I could do to make myself feel better was to take care of myself, starting on the outside. Spring was just around the corner and I started making sure I established my self-care routine again. I used essential oils to make my showers even more relaxing and enjoyable. I made sure I put on an outfit I liked every day  even though I was no longer working at this point and most days wasn’t seeing anyone but my husband and Sir Mac N Cheese, it just made me feel a little more like myself again.

Now I am really getting into taking care of myself not just on the outside but on the inside too!

I’ve started a skin care routine (any other MS Warriors struggle with acne?…I’m thinking my stress levels and two rounds of steroid infusion therapy in 3 months kind of had something to do with it? I’d love to hear your tips and tricks!)

I’ve started taking pride in myself, both inside and out, and I’ve started an “internal makeover”, one could say. I am actively making sure that I keep that icky negative energy out (as best I can) and soak up as much positivity as I possibly can. So anyways, I’m pumped about this beauty package today.

But I got more than one package today. I got my first shipment of Glatiramer Acetate injections as well as my auto injector and training kit. Yeah…that package was slightly less fun to receive than my other one.

I spent the beginning of this afternoon reading and watching the training materials the drug company sent and organizing my “medicine cabinet” (which is starting to look like a small pharmacy) and trying to get myself prepared for Monday, when I start the injections. I will say, that after watching the training videos and seeing how the auto injector works I am feeling slightly less nervous about injecting myself…SLIGHTLY. I’m still thinking it will take some time (and probably an emotional breakdown or two) before I get used to it. But, that’s just it. I will get used to it. Someday. It helps to have a trained nurse coming to our home to teach my husband and I for the first day.

I will write my thoughts on my first experience with injections sometime next week, I am sure 🙂

 

 

 

Gratitude

Today started out as a very frustrating day. I spent hours on the phone with different pharmacists, nurses and representatives of the MS helpline trying to get my first at home nurse visit set up, where I will learn to give myself my injections of Glatiramer acetate  (the generic form of Copaxone).

There were many questions, warnings, and instructions that each person had to go over with me. By my fourth or fifth phone call of the day I was starting to get annoyed at the information I was hearing over and over again. I know that all of these people wanted to help me, and were just trying to make sure I understood my medications but I just wanted to tell them “Listen, I am completely aware of all of the risks and side effects of this drug. I went over them with my doctor extensively. Also, you don’t have to tell me that it is not a cure. I’m aware of that. What I don’t know is how to give myself a shot, and you can’t teach me over the phone so let’s get to the part where we schedule the training.”

But instead I sat there and listened to each of them repeat the same information. The same words smashing around on the inside of my brain. Scarring. Injection. Needle. Risks. Pain. Insurance. Not a cure. Syringe. Scarring. Injection. Needle. Risks. Pain. Insurance. Not a Cure.

I finally ended my last call of the day two minutes before I walked into my therapist’s office for our weekly appointment. At that point I think I was really needing that appointment. I just needed to vent.

I was feeling frustrated. I couldn’t help but feel more and more like a name on a list of “people with MS” each time another bored sounding employee from the drug company would call me up and talk to me in the same monotone voice about the drug I was about to start, and the risks, and the things to watch out for…

I was completely consumed in my anxiety, frustration, and the loneliness I felt at that moment. Not a single person (with the exception of my neurologists assistant) that I had talked to on the phone had sounded like they cared. They just sounded like they were bored and reading off a script the drug company had given them. It all felt so cold.

I was letting the negative energy I was feeling take control of my mood and thus, how my day was going.

After talking with my therapist I started to realize this and shift back into a more positive energy and we ended up talking about the power of the intention behind our thoughts.

Dr. Masaru Emoto was a Japanese researcher and author who theorized that the human consciousness could have an effect on water crystals. He tested this by taking a drop of water from a constant water source and placing it on a single sheet of paper (also from a consistent source). He would then very intentionally focus all of his consciousness on either a positive or negative statement spoken (and in another test, written) to the water on the paper. He would then place the papers in the freezer and examine them the next day under a microscope. The results are incredible!

The water droplets that had a positive statement spoken to them were formed in intricate and beautiful patterns, just like a snowflake. The droplets that had a negative statement spoken to them were deformed and discolored. He also tested his theory by exposing the droplets to different music, prayers, and names of people in history. There are some youtube videos out there if you google his name where you can see most/all of the actual photos! It’s really amazing how powerful our thoughts and intentions really are. Below are some of the photographs taken by Dr. Masaru Emoto during is experiment.

I really love the beauty in the positivity!

 

It kind of reset my perspective for the day. I decided to stop focusing so much on the negative aspects of my day and instead to concentrate all of my energy on the positive things. My mood has already shifted positively and I am so grateful for the lesson that I learned today and my therapist for helping me discover it.

I know it’s not always easy to find a therapist you really connect with, but it is worth the wait and the search. Don’t give up on your mental health and be kind to yourself!

I challenge you all today to think of five things you are grateful for and send that positivity out into the universe. Lord know’s we could use it 😉

I am grateful for the sun.

I am grateful for a husband who supports me emotionally and financially in these hard times.

I am grateful for my dog, sleeping with his head on my foot.

I am grateful that Sparrow Mom decided to build her nest where I can watch her babies grow.

I am grateful for words and language and our ability to express and connect with people though them.

-A

The brain is quite amazing…

So my brain feels a bit all over the place today so please pardon if this post seems a little scattered.

This morning I had my appointment with my Neurologist. My husband and I knew that we were going in at this point to discuss treatment options, as my recent MRI had given definitive proof of Relapsing Remitting Multiple Sclerosis. No more CIS for this gal! So we did our research.

Anyone who know’s my husband knows that when he starts a project or gets his mind set on something there isn’t a thing in this world that could stop him. So, he went into research overdrive and scoured, I am fairly certain, every nook and cranny of the National Multiple Sclerosis Society’s database for every FDA approved treatment option out there. Then cross referenced it with whether or not they interacted with my current medications, whether they were ruled out because I was exposed to JC Virus (some MS medications can cause brain disease if you have been previously exposed to this virus), and researched the side affects, effectiveness, and risks of each one. He’s amazing. I hope that every person with a chronic illness is as lucky as I am to have the amazing support and love that I do.

We knew we were going into this with a few major concerns. I wanted a drug that was low risk for birth defects as my husband and I start our married lives together we know that someday (a serious someday people) we want to have kids. So, I didn’t want anything that could cause permanent damage to that whole scenario. I also felt pretty strongly that I wanted the benefits to heavily outweigh the risks. I know that these “safer” treatment options are sometimes less effective, but I don’t want anything that is going to make me more sick that I already am. I don’t know if that’s even a realistic thing, or if it makes sense. But Copaxone seemed like the closest fit for me.

I am nervous to start the treatment, but luckily this drug doesn’t have too many side effects. I just have to get used to injecting myself. But that will come with time. I’m not super afraid of the pain, I can handle that (I have a full side tattoo, so I would hope so at least). So that is where my MS journey is at right now.

I’ve been thinking a lot about mindfulness lately and living in the present moment, really connecting to it. I did a great guided meditation last night before bed and something that the instructor spoke about that really stuck with me was how small a part we are in such a HUGE universe of being. It reminded that all of us are connected. We are connected to the people and energy in our homes, neighborhood, city, state or province, country, continent, the world, the universe, the cosmos. The magnitude of it is almost incomprehensible to the human mind. All of these things are existing and working in perfect harmony to keep us alive and our ecosystem thriving.

When I saw my images from my MRI today I couldn’t help but think of that meditation. Even inside our bodies is this crazy complex system that all works in harmony to keep us alive. And even though the neurologist was showing me the parts of my body that were sick, I could also see all the parts that were strong and working and beautifulSeriously, if you’ve ever seen an image of the inside of your own body from pelvis to the top of the head you would think it was beautiful too! It just reminded me that although I may be sick, my body and mind are still strong in many other ways. Even though part of my body get’s confused and attacks itself, a bigger part of it works in a cohesive way together… in harmony, every moment of the day to keep me alive. It made me feel grateful towards my body for the first time in a while.

She’s amazing 😉

P.S. Special shout out, again, to the sparrow mom who is now glaring at me from inside my basket of African Daisy’s. Like..I’m sorry you chose to build your nest in my happy place. We gonna hafta share, girl.

-A

When the ball finally drops does it shatter?

If you have read my Who am I? post you know that last November I was diagnosed with Clinically Isolated Syndrome(CIS). The National MS Society states: “CIS refers to a first attack of neurologic symptoms that lasts at least 24 hours and is caused by inflammation or demyelination (loss of the myelin that covers the nerve cells) in the central nervous system.”

Since that moment my life has changed so much. My husband and I had to make some  decisions to make sure that we were financially and bodily secure in the future, as we had no idea where this disease would take us. We got married with an intimate ceremony in our own home so that I could be covered by his health insurance. We would have gotten married anyways but this really sped things up. (Funny story, when we got married my husband had already ordered the ring a month before and was ACTUALLY planning on proposing that week. Little did he know he’d get the whole ball and chain!) We didn’t know what the future held. We just knew we would stand hand in hand and face it together…no matter what.

It could have been a six months before my next attack, it could have been years, it could have been never. That’s the thing about CIS. It gave me this shred of hope to hold on to that I wasn’t even sure was real or not. My rational brain tried to tell myself that no, most likely it was not real and that it WAS likely that this would not be my first attack. The optimistic, childlike, dreamer in me was still clinging though, clinging to a faint thread of that hope.

Yesterday, I got the results of my second MRI in six months. It wasn’t great. The disease has progressed and I have new lesions in my brain and spinal cord. The MRI showed that one of my previous legions had shrunk (most likely from the two rounds of steroid infusion therapy I had that first couple months) but the rest had stayed unchanged. My neurologist called me to talk about the results so that on Monday at our appointment we can dive right into the treatment options and make some decisions about symptom relief and disease modifying treatment.

I have been clinically diagnosed with Relapsing Remitting Multiple Sclerosis.

At first I took it really well. It’s funny, it was almost a relief that after six months of wondering and hoping and waiting, I finally didn’t have to wait anymore. I knew. That little thread of hope could go away now. And that is ok. I have spent many years feeling sick and not knowing how to describe it to people,  wondering if I was crazy, wondering if what I was feeling was normal, but not knowing how to describe what I felt to people. Now I can put a name to it. A name that I am not ashamed of, but would be lying if I didn’t say I was a little afraid of.

Multiple Sclerosis.

It hasn’t been even twenty-four hours yet but I feel like I have gone through 8,764 emotions. It’s not like hearing this from my doctor was a big shock. I already knew I had CIS from back in November, and honestly expected that the diagnosis would change during the next few years based on the conversations I had with my MS Specialist.

Maybe I wasn’t ready to hear it so soon? Or maybe no matter how prepared you are there is no way to avoid the fear and the sadness that comes with a diagnosis like this. I am afraid of the side affects of the disease modifying treatments that my doctor talked to me about. I am sad for the things I know I am going to miss out on because I am going to be too sick, or too fatigued to attend and will need to put my body first. I am afraid that I won’t be able to be the mother I want to be someday.

And I am mourning. I love the life I have. I am mourning the fact that I am not even twenty-five years old and I definitely  have a disease that I will have for the rest of my life. I didn’t even get 25 years of “normal”.

I know there are plenty of people who will tell me to be grateful it’s not something worse, that I’m not dying, that there are people who are worse off than me. But I feel that I have the right to mourn, to be sad, and to feel bad and scared. At least for a little bit.

But I will get back up. I won’t stay down on the ground where this news yesterday has knocked me on my ass.

I know I am strong. I have fought through scary and tough things before and I have come out the other side a strong woman, with a husband and family I love, a house and dog I wouldn’t trade for the world. My life is by no means “bad”. I love the life I have. Maybe that is why I am sad? Because it’s so unpredictable now, and I’ve never done well with unpredictable.

Not my happiest post yet…but it’s what’s on my mind.

“I don’t need a life that’s normal. That’s way too far away. But something next to normal would be ok. Yeah, something next to normal. That’s the thing I’d like to try. Close enough to normal to get by. You’ll get by. We’ll get by” – Next To Normal, The Broadway Musical

The waiting game.

Multiple Sclerosis has already taught me a few things. Things like:

It’s OK to be tired and need to take a rest. No shame in napping!

It’s OK not to be able to do the things I used to do (like have the full-time job that I loved, even though I might have complained about it while I was working, I never realized how much I would miss my company, work and coworkers until I had to leave)

When I need to go to the bathroom I need to go NOW (come on, I have to be able to laugh about this one, right?)

But a big thing I am learning from MS is to be patient and to live in the present rather than worrying about the future. This is something I am still learning, and expect I will continue to learn through the rest of my life. Mindfulness and being present in the now is something I have worked on in the past with meditation but it has never been more relevant or necessary in my life. With this disease there is no way to predict the future. There are no two patients with MS that have the exact same symptoms. It all depends on where the lesions develop in the brain and spinal cord, what stage of the disease you are at, how your body reacts the treatments and medications. There are SO many things we don’t know about this disease (let alone why/how people even get it).

So I am learning…(let’s be honest, mostly struggling) with just letting go of the “what if’s”. You can’t spend your whole life worrying about the “what if’s” especially if you have a disease as unpredictable as MS. This is a really hard thing for me because anxiety LOVES “what if’s”! What if I progress fast? What if I lose my sight? What if I can’t be the mom I want to be in the future? What if? What if? What if? What if? Sometimes I just need to take a step back – look my anxiety straight in her bossy little face and say “Shut.Up!”.

This is my life and I am learning that I get to control it my anxiety DOES NOT.

So, as I sit here on the deck in the probably too cold to be outside but I am doing it anyways because… Minnesota, weather and write this blog I am actively telling my anxiety to be quiet and to just enjoy this moment. I had an MRI yesterday and will have to wait until Monday morning to meet with my Neurologist and get the results and that is all my brain wants to think of. But what is the point in worrying about something that is going to be the same no matter how much thought I put into it this weekend? Me worrying all weekend is not going to magically make the lesions disappear or my symptoms go away! So as my therapist always says “Why suffer twice?” anxiety makes you suffer before you’re actually in the situation you are worrying about.

So I am making a choice today. I will not worry all weekend about the results of my MRI. What will come will come and I will be strong either way!

So for now, I am going to sit outside and listen to the birds, get some much-needed rest after yesterday’s uber stressful day and be grateful for the now.

-A

P.S. Even though I am not a huge fan of Cesar Millan’s dog training techniques I do love this quote from him:

“Dogs live in the moment. They don’t regret the past or worry about the future. If we can learn to appreciate and focus on what’s happening in the here and now, we’ll experience a richness of living that other members of the animal kingdom enjoy.” – Cesar Millan