My MS Star

Last week I had the pleasure of attending my first “Taste of Generosity” silent auction and fundraiser hosted by the National Multiple Sclerosis Society.

This event not only raises money to help work towards finding a cure for Multiple Sclerosis (MS), it also is a chance to honor MS Stars in our community. An MS Star is someone who has made an impact on the MS community in some way.

When I first heard about this event I knew that I had to nominate someone who has been a super nova of a shining star in my life since my diagnosis of Multiple Sclerosis last fall. My husband.

It was a wonderful evening spent with family and folks from all around the twin cities, joined together for one cause; find a cure for Multiple Sclerosis.

We clean up pretty nice! 

Thank you to all of those who continue to support me on my MS journey through your prayers, words of support and love! You all lift me up, more than you know!

My amazing MS fundraiser T-Shirt quilt we won at the silent auction. Talk about wrapping myself up in comfort! Mac likes it too…

 

El Tango MRI – The steps are simple! Don’t.Move.

I had my second MRI of 2018 today. I will say I was pretty worried going in to it. My last MRI did not go very well and triggered some major anxiety for me. I tried to prepare myself this time and was prescribed sedatives by my neurologist to help me get through my 2 hour-long trip into the tiny tube.

MRI’s are stress full enough.

The loud noises, I am fairly certain I made contact with an alien race during my machine’s clanking that was surely heard out into the deep universe!

The tiny enclosed tube, I can only imagine too many people have felt like the fleshy roll of dough being forced back into its Pillsbury canister upon entry.

The cage locking your head in like a space suit helmet, and a table that feels like it’s laying on top of a bellowing alligators back.  (If you do not know what an alligator bellow sounds like, treat yo self!) ⇓⇓⇓

 

Now I gotta say I am SO grateful for the headphones/Pandora station they offer during the procedure. Nothing like the relaxation of headphones so faint and full of static that you couldn’t possibly hear the music over the raucous machine surrounding you.

The best part is when the machine pauses for a second and you get drawn out of your sedated stupor by, the suddenly predominantly louder, “If I die young, lay me down in a bed of roses…” (you know…that cheerful diddy from 2010). If I could pick ONE song to never be included in my MRI playlists it would be that one. I’m just getting an MRI for god’s sake let’s slow the roll on the funeral music.

All in all this MRI went MUCH better than my first two. I am chalking it completely up to the sedatives I was given beforehand.

Sedated and waiting to go into the machine!

Seriously, a calm mind is absolutely vital when you are in a machine like that for two hours. If I gotta get that calm mind through the sedatives for now, than so be it.

I hope that anyone else who has a tough procedure/appointment today finds out just how brave they really are today! Sometimes the things that we deal with, with chronic illness and autoimmune diseases, are shitty. But that is just fine because Spoonies are some strong motherf*$‡%ers!

-A

MS🧠Kicks🧠Ass🧠But🧠So🧠Do🧠I

This morning I woke up for the fourth day in a row with limited (VERY limited/borderline no) feeling in my right leg. I’ve also been having increased tingling in my right foot, and some weird hearing issues. And lastly,  muscle spasms and tremors in my right leg. In the past I have had issues with my right leg losing feeling, but it came back after two rounds of steroid infusion therapy.

I know that this could just be a pseudo relapse due to stress (seeing as most of the symptoms are in a leg that has had issues before makes me think this is likely?) but it scares me nonetheless. It still means that something is wrong. It means that inside my brain there are parts that are dying, being eaten away at by my own immune system.

I have reached out to my neurologist and I am waiting to hear back about what he wants to do about this flare of symptoms.

Today has been a rough day. It’s so hard to explain what it feels like to know there is something wrong inside of you.

It’s so hard to trust your own body and listen to the strange sensations we feel with MS when there are people around you suggesting that it is “just your anxiety” or all in your head. I am still learning how to trust my body, something that is SO important with a disease like MS. God, it’s still weird to say sometimes, disease.

I am the one living in this body, I am the one who knows when something doesn’t feel right. I have lived long enough with anxiety to know when it is wreaking havoc in my body..and when it is not. When it is something else. So I need to trust what I know.

It sucks to have to miss out on things and have to stay inside and rest when my heart and mind still want to be out having adventures. It is unsettling to have a mind and body that are on completely different pages sometimes. I am not choosing to be sick. I am still learning how to accept that some things, like having this disease, are out of my control.

If any of you have someone who is struggling, who is sick, or who just are having a rough day today, give them a hug. Or shoot them a text reminding them they are a badass mother****** and that you love them! We all can use a little pick me up some days.

“Without a little lift, the ballerina falls.” – Next To Normal

So this is for you, yes YOU. The anxious ones, the sick ones, the overworked ones, the black sheep, the depressed ones, the frightened ones, the lonely ones. YOU ARE BEAUTIFUL. YOU ARE STRONG. YOU ARE EXACTLY WHERE YOU ARE MEANT TO BE 💕 Keep on that fight, you courageous warriors!!

With a heart full of hope – A

Multiple Sclerosis Meltdown

I had a bit of a meltdown today.

I woke up in a body that did not feel strong.

My eyes open in the morning and my mind is 25 years young.

But my body does not feel like 25.

It feels weak. It feels fatigued. It feels unsteady.

Does everyone ache the way I do? Do they feel it at this age too?

I want to go out and explore the world.

I force myself to walk with my dog. Probably pushed too hard.

And after we both end up sleeping on the couch.

I don’t like feeling like my body is failing me.

I don’t like when the words “It’s not fair.” run across my mind for the millionth time.

It’s scary to know there is something wrong inside, something that no one can see.

Its unsettling to know that my own immune system is the thing hurting me.

I’m anxious for all the tomorrow’s and uncertainty they bring.

I am angry at my frantic mind for pulling me out of the present, out of calm.

Today I feel like 25 trapped in 93.

Today is what my husband and I call a “challenging day”.

It’s not bad, because it’s still my life and that is precious.

So we choose to look at this disease as a challenge.

Something that we can overcome.

I had a bit of a meltdown today.

But having good cry is not something that is wrong.

And although I may feel sick today I know

It’s what is on the inside that makes me MS Strong.

-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

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