I Am From

I am from

Bedtime stories, lilac bushes, the smell of cakes baking. From living room plays and my little brother’s laugh.

I am from

The smell of horses on my clothes and the thrill of spying on my older sister. From anxiety pills, singing in the bathroom mirror and dreams of being a Broadway star.

I am from

Reading books until my eyes would hurt and growing up too fast. From late night phone calls, crying myself to sleep, and from losing myself to a monster hidden inside a man’s body.

I am from

Daydreams and parents that fought for me and never gave up. From the rush of freedom when you tell someone toxic ‘goodbye’. From therapy, from growing pains, from surviving.

I am from

The windy streets of Chicago, staying up late drinking wine on the deck and flipping off taxis that almost run me over.

I am from

Butterflies on the first day of college, from counting my last quarters to pay for the train. From Dunkin’ Donuts coffee and a cigarette before work.

I am from

The smell of an empty stage on the first day of rehearsal, dogs barking and dive bars. From the feel of leash in my hand and garage cover bands.

I am from

Packing up my belongings in the back of a truck and admitting when I need help. From the biting cold of Minnesota winters and the scorching sun of the summer.

I am from

Sweeping up hair in a high-end salon. From the night that I met him and fell in love. From finding each other and learning to trust again after all of life’s pain.

I am from

The new puppy crying in the middle of the night, the smell of bacon on Saturday morning and picking up dog poop. From floppy ears, wet kisses and going for walks.

I am from

Two apartments, one townhouse, then our home. From a diamond ring inside a Christmas ornament. From a night in November and an exchanging of vows.

I am from

A phone call that changed my life, fatigue, pain, and MRI’s. From Panic attacks, steroid infusion therapy, IV’s and the kind words of nurses.

I am from

PTSD, headaches and lesions in my spine. From being diagnosed with Multiple Sclerosis. From getting back up when life knocks me down and learning each day.

I am from

Lesions in my brain, syringes, the clean smell of a hospital that makes your nose wrinkle. From injecting myself with disease modifying drugs and the painful hold of the MS hug.

I am from

The compassion of others, from faith in myself. From laughing so hard that we both end up crying, from flashbacks, kisses goodnight and wishes for sweet dreams every night.

I am from

Positive thinking, energy, vivid dreams and poems. From strength in the face of my greatest fears. From soft blankets, dog snuggles, and songs stuck in my head.

From determination,  finding a cure, walking for awareness and the power of love.

From becoming a woman I can be proud of.

The Spoon Theory

Most likely if you, or a loved one is living with an autoimmune disease you have heard of the “Spoon Theory”. When I was first diagnosed I came across this theory when I was working to educate myself about Multiple Sclerosis. People living with an autoimmune disease experience high levels of fatigue. Unlike normal tiredness, this fatigue is all-consuming and cannot be warded off with a simple cup of coffee or a quick nap. It is bone aching, lead eyelids, energy sucking exhaustion. When fatigue hits we really don’t have any other option than to rest. It’s not a suggestion from our bodies, it’s a demand.

The spoon theory was created by Christine Miserandino in an essay she wrote in 2003. She used spoons as a physical representation of the amount of energy we have available to us to complete activities in our daily lives.

Imagine that you only had 12 spoons, that’s what people with MS get. 12 spoons to get you through your whole day. Waking up costs you one spoon, showering is two, getting dressed is two, eating is one. That’s half of your spoons gone before you have even walked out the door in the morning!

That is why people living with chronic or autoimmune diseases need to plan their activities carefully. Prioritize things that need to get done for early in the day in case we run out of spoons by 1pm. That is why it makes working full-time hard for many people. That is why sometimes we have to put rest first.

Spoons can be replenished by getting a full night’s sleep. The caveat here is that many people living with autoimmune diseases suffer from sleep issues such as insomnia or pain that keeps them from getting a good night’s sleep. This can cause us to go even further in the hole with our spoons! We can borrow spoons from future days if needed but those spoons will eventually need to be replaced by taking rest days. That is why it is important, I am learning, to make sure I plan a couple of days of “nothing” after any big events or holiday weekends.

So when I say I am low on spoons, now you know I’m not just begging you for free silverware!…but maybe a nap…

-A

Stronger than you think.

This weekend I tackled something that I have been dreading ever since I got sick last fall. I went to a big social event and I stayed the whole time! On top of that, I had so much fun!

My husband and I attended our friends’ wedding this weekend. Leading up to the day I was pretty nervous. This would be my first big “social outing” pretty much since my diagnosis of Multiple Sclerosis last fall.

Even before my diagnosis I would always get a little bit nervous before going to parties or events where there would be big crowds and lots of noise. Shortly after I found out I had MS my husband and I tried to go to a Timberwolves basketball game and we ended up leaving before the game even started due to me having a massive panic attack. I just couldn’t handle the noise of the crowd, the feeling of having so many people close to me, and the claustrophobia brought on by being enclosed in a building with so many people and limited exits.

Since then my social anxiety has grown more and more. What if I don’t feel well at the event, what if I need to leave but can’t find a socially acceptable way to do so? What if I push myself too hard and have another relapse? What if I have a panic attack in front of everyone? My mind just races to the worst possible scenarios, if I don’t actively work to calm myself down.

My energy levels still have not bounced back completely, so I was also uncertain as to how my body would react to an “all day” event.

But after all of that worry, I had a wonderful time with our friends and honestly didn’t feel too much fatigue/weakness the day of the wedding. I made sure that I stayed hydrated and limited my alcohol, and I kept cool by staying in the air conditioning as much as possible. I think I had so much else going on, and was focused on all of the love and joy around me that I forgot that I was even worried about “what my body could handle”.

I forgot that I had MS. That was really great feeling.

Laughing with friends, chatting with people I hadn’t seen in a while and dancing with my husband just filled my heart with so much positivity and happiness.

Now don’t get me wrong, my big weekend didn’t come without some price to pay. I am pretty sure I slept the entire day on Sunday, only waking up to eat and go to the bathroom. This morning I was pretty exhausted still. But I listened to my body and took a nice little morning nap (is that even a thing?). Slowly but surely, I can feel my energy coming back to me.

Even though MS does limit me physically at times, I am learning how to balance this disability and my life. I am learning that sometimes it is worth it to use a little more energy for a special occasion, I just need to plan on having a couple of “rest days” afterwards to allow myself to recover.

Multiple Sclerosis makes life more difficult, that is for sure. But it also has pushed me to realize that I am stronger than I ever knew I was. I can face the things that scare me and come out the other side smiling.

I am working on continuing to express myself and my emotions/experiences through creative outlets. Today I tried singing for the first time in a long time. It felt so good! I will say that I was surprised how tired just singing a few songs made me, but it was worth it!

I thought that a cover of “Titanium” expressed perfectly how I am feeling about my MS right now. It’s tough, I am fighting every day, but I am strong.

 

Am I out of the woods yet?

Summer is officially in full swing and I feel like I am on the up and up! I am finally starting to feel better after what felt like a month-long bout of the flu! In actuality, it is likely that I was experiencing some initial side effects from my Glatiramer Acetate injections.

I am now a little over a month into the injections and I am feeling truly blessed that some of my pain and fatigue has eased up! It’s perfect timing because my husband and I are about to get started on a busy summer of weddings, our own wedding planning, and summer road trips!

I am still having a little anxiety about how unpredictable MS is. I worry that I will have a sudden flare up on a day with an important event or during a trip! The “what if’s” that come along with this disease are exhausting.

What I need to do is stop worrying about the future and just enjoy my now! In the words of another one of my favorite wizards;

“My philosophy is that worrying means you suffer twice.” – Newt Scamander, Fantastic Beasts And Where To Find Them

As summer has started to heat up and I get ready for more and more outdoor activities and plans I have really been interested in getting a cooling vest. Heat is one of the most difficult triggers for my MS. Just twenty minutes outside on a 75-80+ degree day and my fatigue spikes exponentially. I get nauseous, dizzy, and weak. It really doesn’t take much exposure to the heat to leave me feeling like a rag doll with the stomach flu.

Usually my symptoms subside very quickly after cooling myself back down to a normal body temperature. So far I do that by seeking out air conditioning, drinking lots of water and using a cool neck wrap (one of those things that you put in the freezer).

The issue I am running into is that sometimes I want to go to a party or concert or wedding and not being rocking an ever so fashionable ice pack around my neck…I mean I’m all for accessorizing…but maybe not with that.

I have read a few blogs and lots of reviews about cooling vests made specifically for people with MS that can go under your clothes. I want one!!! I am looking into insurance coverage for one of the Thermacool under the clothing vests.

It makes me so excited and happy to know that there are tools out there than can make my daily life a little easier!

Overall, I am feeling like the winds have shifted and things are flowing through my life with a bit more positivity and ease! I want to keep that going!

Even though the past month has been difficult, I made it through. It is a sense of accomplishment to know that I have gotten back up after MS has knocked me down AGAIN! I may not be back to 100% or even 75% but I am getting there!

I know this won’t be my last battle with MS, but the small victories feel good! And feeling my body begin to bounce back feels even better!

Keep the positive thoughts going in your lives and positivity will manifest itself from within you!

-A

A Father Is…

To a daughter a father is a very extraordinary man

From the first smile that they exchange, and until the very last

He will always be her support, he will always have her back

 

My father has many lessons to bestow upon his kids

He taught us to ride a bike and to try to hit a ball

He taught us to be good sports, and to get up when we fall

 

He taught my sister to be silly and be true to who she is

He taught my brother to be kind and to hold a baseball glove

And he taught his youngest daughter the power of unconditional love

 

I remember funny moments, like our morning drives to school

Like our trip to San Francisco, so much laughter in our past

It’s those memories that are so strong, that comfort and will last

 

We’ve had our times that tested, waters cruel and storms so rough

But even in those darkest times you taught your patience and your love

And that to stay afloat sometimes you need to look for guidance from above

 

My father is a man of courage, love and faith

He packed up the truck and stood there by my side when I moved two states away

And when I wanted to give up on my dreams he encouraged me to stay

 

He is a joker a couch napper and a protector of his house

He is a leader in his work, a loving husband to his wife

He leaves glow of happiness in the hearts of all those in his life

 

Coach, Husband, Boss, Son, Brother, Uncle, Friend and many more

My father wears many hats, a stack of them so tall

But I think the one that says on it – “Dad” – Is my favorite of all.

 

 

I love you, Daddy!

Love,

Your baby girl

Moments of Silence

Moments of silence, moments of peace

I live for them as they recharge

My internal battery that always seems to be running on empty

Another thing I can chalk up to my disease.

 

Life can seem so hectic, even when you’re standing still

The moments become memories right before your eyes

It doesn’t matter if you’re moving too

Even if you cannot move the world certainly will.

 

My hands smell like a hospital or a clinic room at best

Sterile and clean in a way that bites my nose

And there are bruises on my arms

And the rest of me is waiting for the results of all those tests.

 

“Please make a fist, now I’ll just find a real good vein”

I’m a pro at this, I think, I’ve done it a thousand times

But I still look away from the needle, and don’t look right at the blood

It seems the only thing I’m really used to is the pain.

 

The blood is gone, the tests are done, and the pee is in a cup

Now I wait here wondering if I’ll get a phone call like before

One that changes life forever, or shocks me through and through

One that makes my blood run cold or tells me time is up.

 

But as I sit here on the deck, my dog sleeping on my feet

The sun shines down on both of us warming up our souls

I smile and enjoy this moment, and appreciate my life

Because these bruises are my armor against any fate I meet.

 

All the pain in life has lessons, if you look just close enough

All your suffering will make you brave and strong

So, do not let your heart grow heavy, and never think that you are weak

For the times that were so hard on you have made you really tough.

 

A day in my body, one that is tired and autoimmune, will teach you many things

It will teach you to stand strong, when the foulest winds will blow

It will teach that you have courage that you never knew before

It will teach you to see the joy and the beauty that life will bring

And most of all it will teach that you can fight

and you can get through anything.

-A

Exhausted is an Understatement

I am emotionally and physically exhausted. This past month has been hard. Between starting injections, fighting off a relapse (or whatever this is), trying to manage pain, working through anxiety issues, death in the family and the political unrest and instability that our sentient Cheeto of a president is encouraging… let’s just say it has been a rough month or so.

I wasn’t going to write a post today because I was feeling so down. I had a bad injection this morning that caused some swelling and much more discomfort than usual.

Swelling from injection 😦

Mom, don’t worry, I sent a pic to my doctor and he said it was most likely just not injected deep enough! But if it happens again we may need to rethink Glartiramer Acetate…I feel like when I have a bad injection day it just kind of starts my day off shitty.

I’m not a betting gal, but I would put money down that anyone who has to stab themselves and inject a foreign substance into their body for their immune system to attack would probably describe the experience using a similar vernacular.

I’ve been extremely fatigued this past week or so. I didn’t think my fatigue could increase more from where it was at, but my body never ceases to prove me wrong. I feel down about myself because I have been so weak, and so tired. I have a pretty strong sense of self, but I can’t help but feel bad about myself when all I can do is sleep 15 hours a day and still need at least one nap to keep me going for the few hours I am awake.

It’s frustrating to watch my life pass by and to be too tired, or sick, or anxious to be able to actively participate in it.

I didn’t want to write this post because I try to be positive and I knew I didn’t have much positivity in me today. But then I talked to my therapist and she reminded me that this is my truth. People need to know that not every day is full of positivity and success and joy. Some days are hard. Some days you cry. Some days you hurt. And that is ok. That is human.

I know I am a strong woman. I wouldn’t be able to fight this fight if I wasn’t, but that doesn’t mean that I am not allowed to have my weak moments. No matter how strong we are, we all have days that knock us to our knees. What matters most is that we get back up again. It’s ok if we stay down on our knees for a little while, it’s ok to be sad and frustrated sometimes. I know that things will get better.

I hope that wherever you are on your journey today that you are able to find strength and remember that even at the end of the longest and darkest of nights the sun will always rise in the morning.

-A

5 Facts About My Anxiety

Anxiety is the most common mental illness in the United States. It affects over 40 million adults a year just in the U.S. alone.

The sad part is that well under 50% of people with anxiety seek treatment for it.

Anxiety is very different from simply feeling anxious. Everyone feels anxious at times in their life. It is completely normal and healthy to feel anxious before a big test, a job interview or airplane flight. Anxiety is your body’s way of taking care of you. It’s way of saying “Hey! This could be “dangerous”. We should be careful!” It’s a primal instinct that we all use to this day. The issue arises when you cannot shut off that anxious feeling after the test is over and the flight has landed long ago. It becomes an issue when day-to-day things like making a phone call or riding in a car send you into a panic attack. It becomes an issue when you are no longer in control of your life, anxiety is.

There are different types of anxiety disorders. Generalized Anxiety Disorder (GAD), Panic Attack Disorder, and Social Anxiety are just a few of the most common.

There is a sort of taboo around mental illness. I do think that our society has made some very positive steps forward regarding shining a light on mental health issues and taking away some of the stigma around it. We need to talk about it. We cannot ignore our mental health any longer.

I remember, way back in my freshman year of high school, a classmate of mine confided in me that she was going to kill herself that night. She made me promise not to tell anyone and said she would hate me forever if I did.

I confided in my best friend and we were so scared for this girl that we knew we couldn’t keep this secret. We told the crisis help group at our high school. The next class period the classmate who had confided in me was taken out of the classroom by a counselor. She did not kill herself, but she did keep her promise to hate me from that point forward.

I was absolutely wracked with guilt. I felt like I had broken someone’s trust and done something wrong. I recall talking to a priest about it at one point soon after. He said something that has stuck with me my whole life. He said;

“There is nothing bad about what you did. Evil thrives in darkness. What you did was shine a light on it so it could not thrive anymore. Sometimes shining a light is all you can do.”

So I have continued to try to shine a light on mental illness. For too long it has thrived in the darkness, hidden in the shadows and only spoken about in hushed tones. Well, times up. Not anymore.

1. My anxiety makes me physically ill. Anxiety doesn’t always manifest in the “classic” way that one would think it would. For me my symptoms of anxiety can range from trouble breathing, shaking, shivering, flushing, nausea, headaches, vomiting, inability to focus, panic attacks and more.
2. My anxiety makes me flakey. This is something I really do not like about my anxiety. I absolutely hate that there is a fear inside me that is powerful enough to make me want to cancel on things I want to do. I have been working on this a lot lately. Having a chronic illness, I am constantly having to check in with myself to see if my symptoms are from MS or Anxiety. I can usually tell, it’s funny, I can actually tell the difference between an anxiety stomach ache and an actual stomach flu stomach ache. When I feel sick from it I try to acknowledge to myself that what I am feeling is anxiety and that is OK. Acknowledging it is half the battle.
3. My anxiety makes me lash out. I am not proud of this. Sometimes I will not even realize that my anxiety is bubbling up inside me, coming dangerously close to boiling over. Then someone will ask an innocent question, or my dog will bark to try to get my attention and I will snap and say something with a sharp tone, or make some snarky response. I immediately feel guilt and know that I am not really angry at that person, or mad at my dog. I am anxious and, like a wounded animal trapped in a corner, I have lashed out. Then, I have to remind myself that I can leave that corner whenever I want to. Anxiety is not in control of my actions, I am. 
4. I see two doctors, take 4 medications and meditate daily to help manage my anxiety. I cannot emphasize enough how important my mental health care team has been to me. They have helped me navigate and understand my illness. They have given me coping strategies and techniques to help me during panic attacks. They have made me realize I am not at all alone in this fight. My psychiatrist has helped me navigate that difficult world of finding the right medications for my body chemistry to help me find balance. If you suffer from a mental illness and have not talked to someone about it please reach out to your local crisis hotline. They can help direct you to a licensed therapist or psychiatrist in your area to get you the help you need. You do not have to fight this alone. You are not alone!
5. I am not ashamed of my anxiety. Yes, it is a part of my life (sometimes a very big part) but it does not define me. I talk about my anxiety so publicly because I know there are people out there, silently suffering, and they need to know that there is nothing to be ashamed of. They need to know that there is a rainbow at the end of the storm. They need to know that help is out there, all you have to do is ask.

Please, reach out to your loved ones. Check in with them and make sure they are doing ok. If you are feeling anxious or depressed or just “off” tell someone! If you don’t feel like you have someone you can tell, reach out to your local crisis hotline.

You are not alone. You are worth it. You are stronger than you know. Together we can shine a light on mental illness and help each other find the help that we need! Stand strong, warrior.

-A

 

Dear MS…

Dear Multiple Sclerosis,

We’ve been seeing each other for quite a few months now, but I know it is just the beginning of our relationship. When we first met I didn’t know much about you. I had heard your name before but never really given you much thought. But then you showed up one morning and changed my life forever.

You brought with you some of your not so pleasant friends. You know the ones I am talking about…numbness, tingling, lesions, burning, dizziness, and fatigue to name a few. You introduced me to steroid infusions, injections and MRI’s. I can’t say I’m a huge fan of those guys either.

You scared me more than I have ever been frightened before. You make me feel weak. You make me feel sick. You make me feel isolated and anxious. You took away my trust in my body.

You’ve been a tough pill to swallow. I’ve hated you, been bruised for you, and miss out on fun things for you, when you demanded it.

But I have not given in to you. I won’t ever stop fighting you. You may be a part of me now, but you are not what makes me me. 

Despite your efforts, I have stood back up each time you’ve knocked me down. I have learned that I am stronger than I ever knew I was. You have taught me take my body seriously. To listen when it’s signaling to me that something is off. To focus on the positive more than the negative.

I have learned that even on my sickest days, I have people around me who will support and care for me. That I am never alone. I have learned that the power of love will shine bright enough to light up even the darkest of nights and frighten away even the most ghoulish of nightmares. I have learned to be courageous, even when I don’t want to be.

I have learned to take things a little slower and enjoy each minute. To stop and appreciate the everyday things and the beauty all around me. I have learned to love more fiercely, to be more quick to forgiveness and slow to anger. I have gained a compassion for life and the miracle that it is!

So in the end…I cannot hate you. For what use would that be? I’ve chosen to grow, rather than sit still. I’ve chosen to be inspired, rather than be afraid. I have chosen to fight. My life is still my life.

Sincerely,

Mrs. MS Strong