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

 

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

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

 

 

MRI aka: Menacing, roaring, instrument!

So, today was my second MRI in the last six months. I will be honest I was really anxious about this one. Since my diagnosis in November I have started experiencing some new symptoms as well as a few persistent old ones sticking around. My MS Specialist and I decided it would be worth getting some updated scans done so we can make some decisions about starting a medication.

Apparently, back in November I just got a brain and upper spinal MRI (honestly the twenty four hours before/after the diagnosis are a bit of a blur from the emotion of it all) but this time my neurologist wanted to add the full spine as well as the full brain. The nurses warned me that it would be a lot longer than my first MRI and last a little over two hours. I am pretty claustrophobic and really struggle with panic attacks so I went in prepared.

I wore my most comfy sports bra with no metal in it (thank you Victorias Secret!), yoga pants, and a tank top. I meditated as soon as I woke up in the morning (at 5am because my nerves were already in full swing and anxiety LOVES company) and my MRI wasn’t until noon. It helped a bit and I ended up being able to fall back asleep for a little bit. I ended up having horrible nightmares. That is something I want to go into in another post. I have always had extremely vivid dreams and recently have been suffering from some pretty intense nightmares 😦

So after I woke up I did a little light cleaning and got my “happy place” set up for me to come back to after the MRI. This includes:

My lavender scented, weighted blanket (seriously, this thing is like a magic blanket)

A full bottle of water

Harry Potter Hogwarts Mystery all cued up on my ipad

My Himalayan Salt Rock Lamp for a warm healing glow in the room

My favorite pillow, recliner, and some more blankets. I’m kind of a blanket freak…

I was set for the post MRI de-stress so I did another 35 minute meditation to center myself and check in with all the areas of my body I was feeling stress. I use an app called Insight Timer that has thousands of guided meditations for all sorts of situations so I was able to find something that helps to calm yourself while still staying alert and not falling asleep! I really think that helped me for my pre-MRI jitters.

Funny side note: On the drive to the hospital my husband and I passed a middle school and saw bunch of kids doing the “1 mile run” around a field. Remember those things?!? I was HORRIBLE at them…like seriously dreaded them. I turned to my husband and said “That looks so terrible. Honestly I would rather be doing what I am about to do that run a mile right now” You fellow fatigue-ers (that’s not a word, now it is) know what I am talking about!

The MRI started out really well! I took my sedatives prescribed by my doctor, had on a Taylor Swift Pandora station and did a bit of meditation as soon as I got in the machine to calm my nerves and stomach. I felt really relaxed and one of my MS power songs “Fight Song” by Rachel Platten came on so I was really feeling like a badass woman at that point.

But about an hour and fifteen minutes I think the sedatives started to wear off and anxiety started to rear her ugly head again. My head was killing me and I started having a panic attack about the time they gave me the contrast. I knew I was about 3/4 of the way done and REALLY just wanted to get it over with. So I laid there and I cried and tried my hardest not to move. I just didn’t want to hit my panic button and have to start the scan over. I tried to just focus on my breathing and kept reminding myself that this would be over soon…and it was.

When the nurse pulled me out and saw I was crying he was shocked and said that for someone who really didn’t want to be inside that machine I did really well and didn’t move at all. So at least that is something to be proud of. I powered through and even though I was scared I proved to myself that I CAN do it. It might take some tears and a weak moment or two but I WILL get through this.

I wish anyone who is dealing with medical procedures today peace, good vibes and relaxation.

We are all in this together and we have a support system in each other.

 

 

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

 

The fatigue is real…

Ever since my diagnosis of Multiple Sclerosis this past fall one thing that I have learned is that with MS you don’t just “get tired”. You get fatigued. I’m not talking normal every day fatigue either. I’m talking ” I just moved my entire life’s belongings from one apartment to another…alone” type fatigue. (…yes….I did do that when I lived in Chicago…twice).

This fatigue can hit at any time. For me I pretty much always feel it. I’ve been feeling it for a long time now. It was one of the major red flags that something was off in my body. When you start sleeping 18 hours a day and still wanting a nap during the other six it’s time to get checked out. Some days I feel it less than others. Some days I feel like I could hike a mountain or dance for hours, and other days I feel like I am fighting with my entire body just to get out of bed.

It’s definitely one of the hardest parts of this disease for me. It’s unpredictable (just like everything with MS) and it makes it hard for me to commit to things in advance. I hate the familiar ache in my heart when I text or call a family member or friend to tell them I need to cancel plans…again. It hurts my heart when I can’t attend things I have been looking forward to for weeks. And it freaking sucks to miss out on all of the fun things I could have done if I hadn’t been so fatigued from this disease.

I am lucky to have a supportive husband and a tight knit group of family and friends that are very understanding and supportive of me and my fight with MS. But, I know it hurts them too when they get that last minute text asking to reschedule.

I am learning to come to terms with my “new normal”. I am learning that it is OK to put myself and my health first. I am learning that there is nothing to be ashamed of when I need to nap or rest my body. I am learning that when I push myself too hard one day, I will pay for it in the next few. I am learning that the people who love me understand and do not judge, I am learning to to LISTEN to my body when she tells me that we need a break. I am learning.

P.S. pictured is my dog and nap partner Sir Mac N Cheese