Traveling with MS and Anxiety, Part 1: Leaving the House

As I am sitting here writing this at 4am it is currently the FIRST morning of the FIRST vacation I have gone on since my diagnosis of Multiple Sclerosis.

The day before we left I was terrified. I had 2 major manic attacks that day, one of them lasting over 3 hours until I finally passed out for the night. I was quite literally shaking in fear. My husband sat with me patiently, listening to me rattle off every possible thing that could go wrong on the trip and how it would most certainly lead to my death. He held my hands to keep me from digging my nails into my skin so deep that I bled. He counted slowly with me to make sure I kept breathing. He is my superman.

I used to be great at traveling. I moved to Chicago, by myself, when I was only 18. I used to dream of traveling the world and seeing every inch of it! I used to fly back to Minnesota to visit my family and didn’t think twice about getting on an airplane.

I am not sure when that all changed. I think it was about 3-4 years ago, around the time my anxiety became very intense and I was diagnosed with Panic Attack Disorder and PTSD.

Now, even thinking about getting on a plane leaves me scrambling for the bathroom with nausea. Now, staying overnight in unfamiliar places can trigger a panic attack before I even get there. Now, I have to take oodles of medication just to relax enough to be able to go to the place that I am SUPPOSED TO BE RELAXING AT!

Multiple Sclerosis added a whole other level of anxiety to traveling. There are so many “what if’s” and unpredictability when it comes to MS. You can go to bed fine one night and wake up the next morning unable to feel your entire left side, or see, or speak. The thought of having a major attack when I am far away from home, my doctors, and the familiarity of my routine is extremely scary for me. What if something happens to my meds.

I’m going to have to give myself my shots ‘on the go’ for the first time. Woohoo, nothing like injecting yourself with disease modifying drugs and flaunting all of your injection sites in that hot new bikini you bought!

Two nights ago, I did not think I would make it on this trip. Hell, I didn’t even think I would make it out to the car. Even though the massive panic attack was telling me that:

“It’s not safe, it’s an Island for God’s sake!”

or

“You’ll get sick, you’ll be miserable, you won’t have the things you have at home to help you feel better”

or

“You are going to freak out. You won’t be able to sleep there at all. You’ll get so stressed out you’ll give yourself a relapse”

All of those things kept swirling through my head like a corndog in a nauseated kid’s stomach on a roller coaster.

I thought about canceling. But I didn’t.

I told myself that this disease and this anxiety has taken so much from me already. It can’t control my life. I WANT to see this beautiful island and waterfalls! I want to go on this trip!!! So, I mustered up all the courage that I could, packed my bags and we made it here!

I am so happy that I looked a scary thing in the eye and told it to fuck off. I am still having a little bit of anxiety, of course. But it is not stopping me from enjoying this time with my family.

This morning I am going to sit and watch the sunrise on a beautiful island, breathe in fresh air, connect with nature and most of all be grateful. Be grateful that I can still go on trips like this. Grateful that I can conquer some of my fears, one step at a time. Grateful that my family loves me and supports me the way they do. Grateful I found a husband who will always have my back and be my shoulder to cry on, bicep to snuggle, and hand to hold. Grateful for this new day. Grateful for this beautiful life.

New Grill, New Attitude

Big developments in our household this weekend as my husband and I welcomed a brand new baby grill to the family! She is roughly 75 lbs (give or take a few), 61″ long and has a beautiful stainless steel completion.

The proud father of a baby grill (the husband) & Sir Mac N Cheese (the dog)

After a grueling day in the sun my husband finally got the new grill all set up today! We have been looking forward to being able to grill out since we bought our house last fall! So of course we couldn’t wait a moment longer and decided to grill up some sausage and shrimp to have with some red beans and rice tonight!

One of our favorite gluten-free, dairy free “quick” recipes is cooking up a protein of our choice (usually shrimp and some sort of smoked sausage or chicken) and mixing it with some seasoned rice and beans. Delicious, filling and low effort! Those are three things that I often require by the time dinner rolls around.

With MS my energy levels definitely suffer. I need a lot more sleep than the average person. I also have sudden and sometimes severe issues if I push myself too hard and stay up too late/don’t get enough sleep. I have learned not to be ashamed of the fact that I am an adult woman who needs a nap every day. It’s just part of my “new normal”. I need to listen to my body and when it is tired, or hot, or dehydrated or hungry I need to make it a priority to give my body what it is asking for. Which is easier said than done.

Think about all of the times you skipped breakfast because you were running late to work, or stayed up until 2am binge watching Netflix when you know you need to be at an appointment at 9am the next day? How about when you look back at your day and realize that you have barely drank 3 glasses of water let alone the 8+ our bodies need to function fully!

It’s so easy to ignore what our bodies are telling us and put them second to our busy lives, jobs and desires! But we have to remember to thank our bodies and treat them nicely! We only have the one, so be kind to it! Eat those veggies, drink the glass of water and take that nap!

I am noticing that my anxiety levels have gone down quite a bit over the past month or so. It could be a new medication that I started (CBD) that is thought to help with PTSD and the anxiety that comes along with it. It could also be that summer is in full swing so I am getting out of the house more and soaking up a lot of vitamin D! It could be that I am making some progress in my efforts to practice mindfulness and meditation. Personally, I think it is all of them combined!

As much as this diagnosis of Multiple Sclerosis rocked mine and my husbands world, it does feel like the ground is starting to stop shaking. We are learning our new normal and discovering each day the little changes and things that we can do to make our hurdles a little smaller and our daily lives a little more joyful!

We spent the weekend getting some things done around the house (such as giving birth…I mean assembling our new grill), running errands, and enjoying some much-needed relaxation time together.

I learned how to the mow the lawn. I am mildly afraid of the lawn mower and the power that it wields, but I am wildly proud of the finely manicured lawn I produced all on my own!

(minor assistance from husband was required)

So as I sit here as my husband grills up some shrimp, my dog patrols the boarders of our lawn and I gaze out admiring my finely mowed grass I am again touched with gratitude. Gratitude for this lovely little life I call my own! I hope you all have something that tonight you can be grateful for as well!

-A

 

 

 

Link between childhood trauma and autoimmune diseases?

I have been thinking a lot lately about the link between childhood trauma and stress related disorders (post traumatic stress disorder, obsessive compulsive disorder, etc) and Multiple Sclerosis.

According to numerous studies throughout the years there is significant evidence that persons who experienced childhood trauma or prolonged stress and anxiety as a child were at a remarkably higher risk for autoimmune disease. These studies are ongoing and are still working out exactly how and why this happens in the body.

Those of you who have read my story you will know that I was abused as a teen by an older man who I met through community theater. Luckily, my family fought tooth and nail for years to keep me from completely slipping away into the clutches of this monster, and eventually it paid off. I was able to make the decision to end my “relationship” with him and remove him from my life.

But those years left scars on me emotionally. I was always an anxious child and started treatment for my anxiety and depression at a young age (around 15 or 16). But after the mistreatment and trauma caused by this man my anxiety only got worse.

A few years ago I stared experiencing flashbacks, nightmares, severe levels of anxiety, panic attacks and other unpleasant symptoms. I started seeing a psychiatrist and going to regular therapy. Through this I was diagnosed with PTSD. It was only about three years later that I was diagnosed with Multiple Sclerosis.

It is somewhat amazing to think about what a powerful impact stress and trauma can have on the body, even years later. Not just emotionally, but manifesting itself into physical illnesses, and in some cases, autoimmune diseases.

When I first discovered this information I was MAD. I was mad at the man who abused me for all of those years. He took so many things from me. My childhood, my innocence, my trust, my confidence and independence and so much more. But now, to learn that years later my health is now leaving me too and it could be linked to the trauma he caused me…

But the longer I have sat with this information the more my anger has slowly ebbed away. By no means do I forgive what that man did to me. It is unforgivable and to quote my girl Kesha;

Some things only god can forgive.” – Praying, Kesha

However, I do not harbor as much anger and resentment towards him as I once did. The struggles and the pain that I endured because of him shaped me into the woman who I am today. I learned to be strong and to shape my own opinions, I learned to be true to myself because I am enough, I learned the importance and the constant love of my family, I learned that I will never let anyone control me or push me around ever again.

They were hard lessons and took me years to finally start addressing, but now that I have I have found a peace that can only be described as liberating.

I do not want to live with hate in my life. I do not want to live in the past. I do not want to live resenting someone for their crimes against me. I have a good life. Even with PTSD, Anxiety, and Multiple Sclerosis I would say I have it pretty damn good.

I have a husband who not only loves, cares, and understands me…he is my best friend too. I have a family that is my rock, always there to support me and to lean on. I have a wonderful dog who keeps me on my toes and makes me laugh every day. I have a beautiful home with my own little garden and plants and I get to share it with Sparrow Mom and her family too!

(Brief update on Sparrow Mom. I know ya’ll care A LOT. Since she moved out, her three babes have made the great leap of life and taken wing. I could not be more proud of them. Bravo little birds, bravo. The nest is currently unoccupied, despite my daily real-estate efforts. Not to mention the multiple phone calls and coffee dates I had with a robin that seemed very interested…ANYWAYS I have a new friend in my backyard oasis and his name is Mr. Toad. More on him later.)

So I take this newfound information regarding my past (and how it could still be affecting my body in the present) and I am choosing to look at it not as painful reminder of things that once were, but as a positive sign for the future.

This research means that we are making progress in understanding these very mysterious diseases. And understanding is the first step towards finding a cure or a way to prevent them!

It is also a reminder of how impactful stress can be. We know that stress can trigger a relapse with Multiple Sclerosis. So now, more than ever, it is so very important for me to practice mindfulness, tackle my problems one day at a time, and take time to breathe and just relax!

No matter where you are in your life I encourage you to take a moment today to think of a few things you are grateful for, take a couple of minutes to just let yourself relax and enjoy those things, and take a few calming deep breaths. It’s a good day to let go of a little stress!

-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 beautiful. Seriously, 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

Happy Mother’s Day to all the Mama’s out there!

First of all, let me just say that Mother Earth could not have given us more beautiful weather on a day meant to celebrate some of the most beautiful people on this planet! Happy Mother’s Day to all the mothers, mothers in law, grandmothers, great grandmothers, moms to-be, dog moms, cat moms, horse moms, chicken moms (special shout out to the Sparrow mom building her nest in my African Daisy’s on my deck. You go girl! Keep on…mothering) ALL THE MOMS!

But today, I want to focus on a very special mom in my life (no it is not the bird).

My mom.

I have a pretty badass mom. For those of you who know her, you already know that 😉 But for those of you who don’t, just let me tell you…this woman is amazing. She has taught me to be the woman I am today. She is compassionate, loving, creative, quick to laughter, quick to tears (just like me!), fiercely protective of her family and fiercely loving of them too. She taught me how to forgive, even when your heart has been broken. She taught me to dream and to believe anything is possible in my life. She taught me to fight for what I believe is true and right. She instilled in me a deep love of books and stories and truly made me the creative, old soul I am today.

***Ok I am sorry, but we need to pause here to appreciate this photo. The woman lugged around my wriggly butt for 9 months, JUST pushed a seven-pound child out of her vagine… and now she’s got to sit there on a landline and CALL EVERYONE SHE KNOWS to tell them I was born! Come on kids, let’s appreciate our moms for a second. Not only did they give birth to us but there wasn’t no Facebook, Snapchat, Instagram, or Group Text to tell your friends and family you had your baby. Nope! You had to grab a landline, dial in a number, and actually speak to a human. Scary. Let’s also give a shout out to my mom who again literally just gave birth to me and is STILL on fleek! LOOK at that 90’s queen!

I want to just say “thank you” to my mom. I don’t think I will ever say it enough. So here it goes…

• Thank you for giving me life.
• Thank you for teaching me to be myself (no matter how much of a weirdo I may be!)
• Thank you for showing me the way to Narnia, Hogwarts, and Middle Earth.
• Thank you for keeping me safe from those who tried to harm me (even though I fought you at the time. You and dad saved my life)
• Thank you for always forgiving me even when I was a little shit.
• Thank you for always trying to understand me and my views even when they are a little “out there”
• Thank you for teaching me to bake.
• Thank you for gently guiding me back to my true path when I have strayed, but never forcing.
• Thank you for making me play outside and wait to get a cell phone.
• Thank you for comforting me every time I call and still being my go-to person to calm me down when anxiety takes over.
• Thank you for always being the first one to offer to be at my side during medical procedures and appointments.
• Thank you for being the amazing, compassionate, eager to learn, creative, loving mother of mine.

 

Happy Mother’s Day Mama,

Your Baby Girl