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

 

 

Let’s talk about ANXIETY

Anxiety is something I have struggled with long before my diagnosis of MS. I was lucky to have a mom who noticed the symptoms and could see I was suffering even when I was as young as fourteen. My anxiety began to manifest when I as in middle school in the form of hypochondria. I was ALWAYS afraid of getting sick. I’m talking no sharing food/drinks, constantly washing hands, sanitizing my toys, and barricading myself in my room when one of siblings got sick. Growing up, my bedroom was the guest bedroom (I was the lucky kid who got the queen sized bed in her room, but that also came with cost of giving up my room when extended family from out of town came to visit). I can remember just crying with fear every time I knew someone else would be sleeping in my room because HOW in god’s green earth was I going to GET RID OF ALL THOSE GERMS!?!

I saw a doctor and we talked about what I was experiencing and I was put on an anxiety medication and things got a lot better for a while! Unfortunately when I was in high school I experienced abuse from an older boy and almost lost myself to his dark influence and hurtful behavior. Luckily, (again!) I have some pretty rad parents who devoted their lives to making sure I got away from him and found a place where I was happy and safe (as happy as kid can be when going through that kind of abuse at the ripe young age of fifteen) and have since been getting the mental health treatment I needed.

About a year ago my anxiety got much, much worse than it ever had been. I had recently moved back to Minnesota from Chicago and was not adjusting well. My (then) boyfriend (now) husband and I decided it was time for me to start seeking regular mental health treatment again. I was diagnosed with PTSD from sexual and emotional trauma, Generalized Anxiety Disorder, and Panic Attack disorder. I have been working with a wonderful psychiatrist who has helped me find meds that work for me and is helping me find techniques to deal with my frequent panic attacks.

Then November came…and along with it my diagnosis of Multiple Sclerosis. My anxiety has gone through the roof. It’s almost like the diagnosis snapped me back to being a child again. I have started feeling that familiar and horrible overwhelming feeling of being afraid of everything that could make me sick. Ironic isn’t it? The hypochondriac child gets sick as an adult with something you can’t get better from?

How does your anxiety manifest itself? Since my diagnosis I have been experiencing a whirlwind of emotions but anxiety and fear are definitely in the forefront. At first I was having severe panic attacks on almost a daily basis (I am now down to one or two a week- THANK YOU MEDITATION and Xanax for during the worst of the attacks). I’ve noticed that my anxiety manifests in nausea, vomiting, scratching, Insomnia, rapid obsessive thoughts, racing heart, flushing, shortness of breath, sudden feelings of intense doom aaaaand cue panic attack…

What do you guys do to help with your anxiety? Besides seeking help from a medical  professional ( we need to take our mental health just as seriously as our physical health and that means there is NO SHAME in going to a mental health provider. You wouldn’t be ashamed to go to the doctor if you got pneumonia? Right!?!)

I am currently seeing my psychiatrist for medication management and a phycologist specializing in helping those diagnosed with chronic or terminal illness. Both of these people have helped me TREMENDOUSLY in understanding and accepting my anxiety and how to get control of it rather than letting it control me. I still have a lot of work to go though.

My go to home remedies for when I am having a challenging day are:

• Walks with my dog (seriously I swear he can tell when I am having a rough day)
• Meditation and Mindfullness exercises
• Drinking calming Herbal Tea
• Use of calming essential oils like Lavender
• Taking a nap (sometimes when I am over fatigued my anxiety takes that as a chance to rear her ugly head)
• Cleaning and organizing my house (I have no idea why it helps but it does)
• Listening to music. It can be calming music or just my favorite uplifting playlist.
• Writing this blog! It’s actually one of the big reason I started this blog. I have always loved a creative resource!

So people…give it to me! I want to hear what you find empowering, comforting and helpful when anxiety gets the best of you!

-A