Learning to Ride the Wave

I have been a bit MIA the past couple of months when it comes to writing. It took me a while to decide that I wanted to share what was going on with me and has taken me even longer to figure out how to put it into words.

If you know me personally or have read any of my other works, you know that anxiety and mental health issues are something I have dealt with ever since I was a young teenager. Over the years I have gone to many therapists, tried many different medications, read many books, done countless meditations, and tried homeopathic remedies to try and “fix” my anxiety. 

After my diagnosis of Multiple Sclerosis about a year ago my anxiety really began to spiral out of control. What once was a small voice of worry in the back of my mind became a deafening roar that echoed violently off of the inside of my skull. Every day I felt like I was at war with my own mind. I was exhausted, I was losing hope, and I was scared.

About a month ago I started an intensive outpatient therapy program (meaning I go to treatment for 7 hours each day but go back home after treatment each evening) to finally address both my PTSD and anxiety. It was a difficult step to take, but one I knew was important for my mental health.

 The treatment I am going through is called Prolonged Exposure Therapy (PE). PE has two parts to it:Imaginal Exposure- revisiting your traumatic event in detail with a therapist, speaking in the present tense, and then discussing and processing the imaginal exposure and your emotions etc. afterwards with the therapist.

The second part is In Vivo exposures. This means “in real life”. These exposures are confronting your fears both during programing and at home after programing each day. You work with your therapist to develop a range of all of your possible feared stimuli or situations (related to PTSD or another disorder, so it could be specific places, people or things that remind you of your trauma and cause panic and anxiety or trigger you in some way) and create a challenging but doable exercise to do repeatedly day after day, until it no longer causes you anxiety.

 This process is called habituation and it is the gradual process of becoming accustomed to safe but uncomfortable situations that we once perceived as scary or dangerous. Once you habituate to a once feared stimuli you move on to the next thing on your fear hierarchy.

I am attending a program that focuses on Prolonged Exposure Therapy as well as Cognitive BehavioralTherapy (CBT), Dialectical Behavior Therapy (DBT), Experiential Therapy(ET) and medication management.

This treatment has been one of the most exhausting, terrifying, empowering, healing, and intense experiences of my life. I am not going to lie and say it’s easy, but I will say it works.

It’s hard. I mean really, really hard, but it is so worth it in the long run. Beginning to free myself from the heavy weights of anxiety and panic that I have been dragging around for so long is so invigorating!

It is both intimidating and self-empowering to wake up every day and face my biggest fears. To look my demons in the eye and tell them to fuck off. To learn to trust and love my own mind again.

I didn’t write for a while as I started this treatment program. Writing is very emotional for me and when I write a lot of my heart pours out onto the pages. I wasn’t ready to write in the beginning of treatment. I just had too many thoughts, fears, anxieties, and emotions to even begin to put them into words, let alone share them with anyone but my therapist.

But then one day I picked up a pen and wrote something that sort of encompasses what I have learned so far from this program and what I am continuing to learn and work on every single day. A Poem entitled : The Wave.

It took a while, but I have finally started to feel like myself again.

For anyone dealing with mental health issues or trauma, I know what you’re feeling. I know how scary, and lonely, and exhausting it can be to fight with your own thoughts every day. I know how far away happiness can feel at times, and I know that it may seem like there is no light at the end of the tunnel.

But this is a gentle reminder that there is.

That you are not alone. That you are strong, even if you feel broken. It’s ok to feel what you are feeling, whatever it may be! Your emotions are valid and none of them are “bad”. Be accepting of your emotions and thoughts, but you don’t have to let them control your actions. You get to do that!

It felt important to share this with you all because too often people find themselves ashamed to admit they are struggling with a mental health issue. Once we start looking, however, we will realize that there are so many people out there who are feeling the same things as you are. Take comfort in knowing that we are all human and we all experience both good and bad in our lives. You are not alone, you are not “sick” and you are not crazy. 

You are grounded. You are loved. And you are enough. 

-A 

The Wave

It feels a thousand years ago

I started on this daunting path

With shaking hands and wild eyes,

Still picking up the broken pieces of the aftermath.

 

What had felt like an impossible feat

Has already begun to come to pass

And the healing that seemed so far away 

Came like a wave crashing over me so fast.

 

Once I accepted where I was 

And stopped trying to control the entire game

I found that were I was, was enough 

And my life was waiting there for me to come reclaim.

 

The part of me that’s hurt is still there

It just doesn’t sting so bad.

I’ve learned to trust myself again,

A self-love I’ve never had. 

 

The fear still creeps up on me

every now and then,

It’s breath hot and sticky

breathing down upon my neck 

 

But instead of curling up to hide 

I look that fear right in the eye, 

And tell it to back right off

Because I get to decide.

 

What is scary, what is dangerous,

What’s worth the adventure and the risk.

That anything life throws at me 

Together my heart and mind can fix.

 

It’s a very scary war to wage,

The one inside your head.

It takes a special kind of brave to speak of your demons

To utter words that long have gone unsaid.

 

Anxiety, OCD, Depression

and so much more.

Just the tip of an iceberg of issues

That the world’s learned to ignore.

 

It’s time we change the stigma, shed a little light.

Mental illness does not make you weak.

It makes you very strong.

And it takes a very brave soul

to ask for help when things go wrong.

 

 

So, the woman who feels hopeless,

Or the man who feels so lost but is afraid to say

Are nothing short of warriors

Donning armor and walking into battle every day.

 

 

So, when you feel the weight crushing down upon your chest,

Remember both the bad and good are but fleeting states at best.

You will learn to cherish every emotion your heart has had and each lesson that life gave,

Once you take a risk to swim and learn to love to ride the wave.

5 Types of Anxiety Disorders

Chances are good that you or someone who you love has experienced some form of clinical anxiety in their lifetime. Anxiety is a completely normal and healthy feeling that all of us feel at one point or another. But having an anxiety disorder is a lot more than just feeling nervous.

I’ve decided to write about five major types of anxiety disorders. Someone with anxiety can have one, two, three or all of them at once! There are more that I will not discuss today, but that does not mean they are not out there!

Just because you have one Anxiety Disorder does not mean that you can’t have another, in fact many of these disorders kind of bleed into the next so it is not uncommon to develop more than one anxiety disorder.

Think of Anxiety Disorders as an umbrella, and all of these different disorders fall under the same umbrella.

Generalized Anxiety Disorder (GAD): Generalized Anxiety is often described as being in a constant state of worry and feeling of doom or dread that something bad is going to happen. However, oftentimes (not always) people with GAD have a hard time pin pointing exactly what it is they are anxious about, it is more of a constant state of general unease.

Obsessive-Compulsive Disorder (OCD): Obsessive-Compulsive Disorder is characterized by  repetitive, unwanted thoughts (the obsessive part) and the need to perform repeated tasks or behaviors (the compulsive part). These compulsions can oftentimes become ritualistic in nature, done to temporarily ease the symptoms of intense anxiety and bring a short period of comfort to the person. The term “OCD” get’s thrown around very casually in our current society.

People love to say “Oh my god, I organized my entire closet by color. I am SO OCD!”  or “You like to clean your house every other day? You must be OCD!”

The truth is statements like that stigmatize and romanticize OCD. A disorder that is anything but “cute” and “funny”. Only those truly fighting the heavy shackles of  Obsessive-Compulsive Disorder know how serious and horrible this disorder really can be. Anyone who truly has OCD would never make an offhanded comment or joke about it.

OCD is not organizing your pens by shade, or sweeping your house every day. OCD is having to get up ten times an hour to check that the oven is off, so that you don’t burn down your house and kill your entire family. Or the guy whose hands are red and raw because he has washed them 37 time already today, but still has to open doors with his sleeves covering his hands. OCD is being completely aware that your thoughts and actions are irrational and not actually helpful to your anxiety, but you have.to.do.it.anyways.

Panic Disorder: Panic disorder is defined as someone who has had (is having) multiple unexpected or repeating episodes of severe anxiety accompanied by; feeling of doom or dread, intense fear of dying, heart palpitations, shortness of breath, shaking, sweating, fear of “going crazy”, nausea, dizziness, numbness and a general feeling that something horrible is going to happen.

Panic attacks are very scary, anyone who has had one (and most people do, unfortunately, at some point of their lives) knows that in the moment it can feel like a near impossible task to overcome the feeling. When people who are having a panic attack say they feel like they are dying, or about to pass out it’s because they truly feel that way.

When repeated panic attacks occur panic disorder can continue to intensify to the point of Agoraphobia. Agoraphobia is defined as:

“A fear of having a panic attack in a situation where it would be challenging or embarrassing to escape. This fear often leads to persistent avoidance behaviors, in which the person begins to stay away from places and situations in which they fear panic may occur. For example, some commonly avoided circumstances include driving a car, leaving the comfort of home, shopping in a mall, traveling by airplane, or simply being in a crowded area.”

Post Traumatic Stress Disorder (PTSD): PTSD is an anxiety disorder that develops when someone experiences a shocking, dangerous, scary or terrifying event. Oftentimes people associate PTSD with soldiers and those who have seen combat. This is a very common and serious cause of PTSD, but not the only one.

PTSD can be caused by things like sexual assault, a car accident, witnessing or being the victim of violence or crime and more. Most people will experience trauma in their lives and recover from it in a healthy way over time. When healthy recovery does not happen PTSD can develop. PTSD is characterized by having all of the following symptoms at least once a month after your trauma:

• Revisiting the Trauma – this could be through intrusive thoughts, flashbacks and nightmares.
• Avoidance Behaviors – this could be avoiding the actual place of trauma, memories or talking about the trauma, or even things that remind the person of trauma.
• Aroused Reactivity – Being easily startled or always on edge, difficulty sleeping, and irritability or angry outbursts.
• Cognition Symptoms – Loss of interest in pleasurable activities, feelings of guilt or depression, distorted thoughts, trouble remembering details about the event or trauma (blacked out memories)

 

Social Phobia (previously known as social anxiety): Social Phobia is an intense fear and sense of self-consciousness in social settings. The intensity of social anxiety can vary from person to person. One person with Social Phobia may be fine in a social setting, as long as they don’t have to speak in front of the group. Another person diagnosed with Social Phobia may have issues even leaving their house due to the overwhelming fear of interacting with others.

The good news is that all of these anxiety disorders are treatable with the use of therapy and medication management. Many times anxiety disorders will require both to be fully and effectively treated.

Cognitive Behavioral Therapy (CBT) is one of the most widely proven treatment options of Anxiety Disorders. When participating in CBT you work with a licensed therapist to identify, address, and change distorted and destructive thinking and behaviors. You work to improve emotional regulation and develop, with your therapist, healthy coping techniques to use throughout your life, because unfortunately you cannot cure anxiety, but you CAN learn to control it!

I hope that this information helped you better understand that when someone tells you they have an Anxiety Disorder they aren’t telling you they are simply feeling nervous or anxious. There is so much more that they are dealing with under the surface.

If you or a loved one has one of these disorders I encourage you to educate yourself (using a reputable source, of course) on the anxiety disorder further. Education is power!

Be patient and kind with one another, you never know what demons someone may be fighting.

And for the warriors currently in their own battles with an Anxiety Disorder, you are STRONG. You are NOT ALONE. And things WILL GET BETTER. Keep fighting warriors!

-A

Brave

What do you think of when you think the word ‘Brave’?

Do you think of knights or warriors or heroes in capes?

Or do you think of everyday people of all sizes and all shapes?

 

Brave is waking up each morning, willing to face the challenges of the day.

It is looking your problems in the face, but never backing down.

It is letting a smile sneak through when all your heart can do is frown.

 

Brave is walking through a valley of fear and doubt and pain.

It is silencing all of the ‘what if’s” smacking around inside your brain.

And somehow calming the restless and anxious soul and letting a racing mind unwind.

 

Brave is showing up to the doctor’s appointment

Even though you are afraid of what they might find.

It is learning to leave the demons of your past behind.

 

Brave is taking a deep breath in… and letting it out again.

Brave is admitting when you need help, that you can’t do it on your own.

It is making it through the night when it’s dark and you’re all alone.

 

Brave is smiling through the tears that are streaming down your face.

And cracking jokes in hospital rooms to ease your loved one’s fear.

Brave is accepting words of help, even when it’s not what you want to hear.

 

Brave is pulling yourself back up to standing, after you’ve taken your hundredth fall.

It is not beating yourself up for the times you showed your pain.

Brave does not mean that you are not scared, that your heart does not race,

and your hands don’t shake, they do.

 

Brave is feeling all of the fear and stepping forward anyways.

Brave is one foot in front of the other, one step at a time.

Brave is being patient for the change you need, trusting that the stars will align.

 

Brave can look at you with fear in her eyes, a quiver in her voice.

Brave can break down and be a monstrous mess

But brave knows that eventually, life will coalesce.

 

Brave is the woman at the clinic, or the man who limps slowly down the street.

Brave is the family in the waiting room, or the patient in the bed.

Brave is the battles we have won in the past, and the ones that lay ahead.

 

Brave is falling into bed after a hellish kind of day.

And telling yourself that even though it was so hard, it’s going to be ok.

Braving is reminding yourself that tomorrow is a brand new day.

 

Brave doesn’t always shock and awe.

Brave can be quite simple and quite small.

And sometimes those little tiny steps are the bravest of them all.

-A

Word Mental Health Day

October 10th is World Mental Health Day. I talk a lot about mental health on my blog. I have been affected by mental illness since I was a teenager. Growing up, my parents were very open about mental health and, having experienced anxiety and depression first hand, were able to recognize when I started exhibiting signs of anxiety and depression when I was around fifteen years old.

I have come to realize that not everyone grows up in an environment where mental health is talked about in a very open and honest way. There are many people out there who have no idea that they are not alone in feelings of sadness, or fear or hopelessness. People who have no idea that there is a whole network of people out there dedicated to helping those with mental health issues and getting them to a place where they can enjoy their lives again. Today is about shedding light on mental health and ending the stigma that seeking help for your mental health issues is something to be ashamed of.

One thing I have noticed that concerns me is the trend of “pill shaming”. The idea that there is something wrong with people if they are taking medication to help manage their mental health. If you had a physical illness and there was a medication available to you that would make you feel better would you stop for one second to wonder “what will people think if I take this medication?”…nope! You would take the meds, and get better! So there is no shame in seeking help from a medical professional if you suspect that you are struggling from anxiety or depression. They are there to help you, and they can help.

Now, I am not saying that there is a magical pill out there that will just cure your anxiety or your depression. There are many tools that I have added to my proverbial tool belt to help me combat my anxiety problems. To name a few; Meditation, Self Care, Writing (my personal writing as well as blogging), Eating Healthy, Counseling, Regular Exercise

One of the techniques that has helped me the most, not just during panic attacks, but also during physical discomfort from MS, illness, etc. is meditation.

I was recently watching an episode of “In Search Of” hosted by Zachary Quinto and they were searching for the answers to how some people are able to exhibit super human strength or feats during periods of meditation.

He was specifically looking at a Shaolin warrior monk who through meditation, is able to complete tasks that would usually leave a human seriously injured. However this monk walks away with not even a scratch to be seen. For example, in this episode the Shaolin warrior monk breaks a wooden staff* over his head. He never loses consciousness, finches, and claims to feel no pain whatsoever!

*** No matter how good you are at meditation I am NOT recommending you do this…unless you are a Shaolin warrior monk…then I guess go ahead.

In search of (haha get it?) an answer as to how this monk is able to endure these superhuman feats Zachary, the monk, and one other person conduct an experiment where they took two MRI scans of their brains. The first scan was a regular scan, but during the second scan the men were asked to put their hand in extremely cold ice water. They were specifically looking for the area of the brain that recognizes pain to light up.

As suspected, when Zachary Quinto put his hand into the ice water his scan showed the pain receptor area of his brain lighting up like a Christmas tree. But when the monk did this same test, while meditating and centering himself into a place a of tranquility, his scan showed extremely limited activity in the pain receptor area of the brain!

Even more interesting, Zachary went into the MRI machine one more time to test just how successful he could be at lowering his pain level through meditation. His scan, while meditating, noted a significant decrease in activity in the pain center of the brain.

Even the doctor who was helping them conduct this tests were baffled at how affective meditation was at physically changing the way our bodies received and reacted to pain!

I have not been feeling great with a stomach bug the past few days and I have found meditation extremely helpful to help ease my discomfort. Sometimes, if your discomfort is too high to even concentrate on a full meditation even just focusing on your breathing can help. “In…two…three…four…out…two…three…for”. That phrase has gotten me through many a tough moment over the past year.

So today if you are struggling with a battle against mental illness, or if you know someone who is, let us all remember that there is always hope, there is always light, and there is an army of people around you (including me!) that are cheering you on and supporting you every step of your journey!

Let’s share some positive vibes today.

-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

 

When you realize a weed is actually a flower…

As I write today I have blisters and scratches all over my hands. I spent the morning outside weeding the front garden. As new homeowners, my husband and I are constantly surprised by things we never realized came along with owning a house. Things like having to call your first extermination service because there is a wasp infestation in your deck railings. Or the first time the upstairs toilet overflows. Or realizing that if you open the upstairs bedroom and bathroom windows at the same time your upstairs doors will all slam shut and scare the poops out of you! All of those lovely, first time homeowner memories will be cherished forever, I’m sure.

We bought our house in the fall last year, so we didn’t really get to see what the trees, flowers, plants around the house looked like in full bloom. Much to my surprise this spring, once our yard finally emerged from its icy blanket of snow I realized that we have quite the little garden started in our front yard! Unfortunately for said garden it took me about a month to realize that the plants growing were in fact intentional, not weeds. Now that I have realized my error (sorry flowers!) I decided it was time to get to work on weeding my garden and cleaning up the front of our house.

Again, knowing nothing about gardening I learned a very important lesson that I shall pass on to my children and my children’s children.

“When one weeds their garden, one must wear gloves, lest their hands will harden”. – A less wise me

Yep, once these blisters heal I intend on having some nice calloused hands to show off my gardening status!

Beginner…the status is beginner.

No matter, I am still proud of the work that I did today. It was hard, physical work, but in a way it was deeply cathartic. Yesterday we buried my husbands grandfather. It was a day full of family, sorrow, memories and love. It was truly a beautiful reminder of what is important in life. Faith, family and love.

As I was weeding the garden, early this morning, I couldn’t help but think. I thought about the past, namely the day before. I prayed for my husbands grandmother and the rest of the family as they process their grief and loss,  and that they will feel a healing in their souls.

I also thought about the present. As I continued to weed the garden the my body began to ache, it was getting warmer and I could feel my fatigue starting to take its toll. But each time I looked at my progress I felt such a sense of accomplishment that I forgot how tired I was. I forgot how easy it would be to just go inside and do this another day.

In those moments I felt weak I was finding comfort and strength in helping another living thing. By clearing out the dead branches and leaves around the roots of the plants to help them better grow. I felt comforted by watering the flowers as the hot sun threatened them and by sweeping off the path walking up to our front door, creating a welcoming pathway.

By the way, while I was doing this I found and AMAZING pink rock. It’s a bit bigger than my fist and beautiful. I put it on our front step. Talk about good energies!

 

Even though the work was tiring and physically demanding, it energized me to be taking care of nature and allowing myself to only worry about one task at a time.

I think that we can think of our own minds as a garden. We need to nourish it, feed it, and care for it to help it grow. And it won’t always be butterflies and rainbows. It tough work. But good work.

Whether it be through reading, writing, gardening, doing an activity you enjoy or learning about a new subject that interests you, I think it is important to keep growing our minds, no matter how stressful or how busy our lives get. We need to remember to take the time to stop and ask ourselves how we are doing. Check in with your body and mind and give it the care it needs! And always remember that you are not alone. There are always people who care about you and appreciate you and think of you. Even if you don’t know it.

I am wishing everyone peaceful minds today and an evening full of love and comfort.

-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