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.

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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

When it rains it pours…

The other night I was sitting on the couch while my dog, Sir Mac N Cheese, was outside doing his dog business. Suddenly, through the screen door, I see him BOLTING across the yard with a small grayish blur just inches in front of him. He was about three seconds from catching a squirrel that had made the unfortunate decision to cross into this big dog’s territory.

I ran outside screaming at Mac to stop, not wanting to witness my floofbaby murder a small rodent, just in time to see the squirrel dive through the chain link fence to safety. My 90lb dog sprinted around the yard a few times, stared menacingly out the fence, and pawed aggressively at the ground making sure that squirrel knew who was boss.

This is not the first time Mac has chased off small mammalian intruders from our yard. However, this IS the fastest I have ever seen my speedy boi move. Unfortunately, I also think he injured himself in the midst of his primal rage.

About an hour later I noticed that he was favoring his back left leg and I called the vet and made an appointment for the next day. Last November, right before I was diagnosed with Multiple Sclerosis, Mac ruptured his ACL and some other parts of his knee in his right leg after my husband took an unfortunate tumble on some ice…onto the dog…

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Mac had surgery to repair his knee the same week I started my first round of steroid infusion therapy. We were bedridden together during my first major MS attack and two rounds of treatment.

Now, I am headed in for an MRI on Tuesday at my neurologists request because we suspect a relapse based off of my worsening symptoms this past week or so.

The vet confirmed yesterday that Sir Mac N cheese has sprained his ACL in his left leg. Guess what that means…back to 24/7 snuggles and rest-time for Mac & Alix!!! Isn’t it funny how we both are kind of relapsing at the same time?!?

I am a bit anxious for my upcoming MRI. I had one not too long ago that did not go wonderfully. I made it through but I am pretty claustrophobic and anxious and the MRI’s are definitely difficult for me. This time I did ask to be given a sedative, so hopefully that will help, seeing as this will be another 2 hour MRI!

So for now, Sir Mac N Cheese and I are going to rest, without feeling guilty! Sleep, without feeling lazy. And relax, without feeling bad about it. Sometimes self-care needs to come first, for all of us!

-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

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It’s OK not to be OK

This is not the easiest post for me to write. It is hard to admit that we are not perfect. It is not easy to discuss our failures and it is so hard to admit that we have thrown in the towel.

Last weekend I left for my first vacation (or even stay away from my home!) since my diagnosis of Multiple Sclerosis (MS) last November. I was extremely anxious about it going in. I was worried about a whole multitude of things. But the biggest and nastiest fear, lurking under the floorboards of my heart, was that I wouldn’t be able to do it. That I would get sick and need to go home, or be too anxious and need to go home, or never even leave the house to begin with!

I went in with a plan. I made lists, did research, and checked and double checked everything. I set myself up for success.

Things went well the first couple of days. The best parts of it were being able to spend time with my family and just laugh, be ourselves, and forget about our everyday worries for a little while. I have an amazing family. They make me laugh like no one else can, comfort me in a way that only years of strong bonds can teach, and they understand me better than anyone on this planet.

Don’t get me wrong, I was anxious those first few days. But it was like the pot was boiling with only half empty water. I wasn’t worried about it boiling over. Things were controlled. Looking back, I was needing to take my Xanax much more often than I normally would, but that is ok! It is what it is there for.

But then on my third night of vacationing I fell apart.

I think I was starting to feel the physical toll of being out in the sun, swimming, cliff jumping etc. It scares me – not cliff jumping, MS – Even though I feel it almost every day, every time my right leg goes numb and tingly it scares me. I tried to remind myself that I have felt that feeling before, it just means I need to rest and I will bounce back in a day or two.

I think I was also having a really hard time being away from the comfort of my routine and familiarity of being at home. I was letting it get to me that my meds weren’t in the same place they always are when I need them, that the bed made my back hurt and crunched like diaper every-time my husband rolled over next to me, that I didn’t have my dog to snuggle and pet when I started to feel the anxiety simmering closer and closer to the surface of the pot.

I don’t know what caused me to boil over. I was fine one moment and in the throes of a full-blown panic attack the next. All I could keep thinking was that I NEEDED to get off this island and go home. My husband tried to calm me down. I took my meds. We went back to our lodgings and laid down and tried to ride out this attack. But I just couldn’t shake it.

We ended up leaving the trip early due to my anxiety. I felt like a failure. I felt like I was giving up on something that I had JUST been so proud of, my courage. I felt weak. It was not a good feeling. I think I cried the whole ferry back to the mainland.

I let myself feel sad for the rest of the night. I allowed myself to feel guilty for leaving the wonderful trip my mom and dad had planned for us. I allowed myself to feel anxious and terrible, but just for a little bit.

I knew I had made my choice, and although I might be a mess right now, that is OK.

It is OK not to be OK. It is ok to admit that you have given it your best shot and you need to go home and rest now. It is ok to say I can only push myself so far. It’s ok to admit that I might not be quite as strong yet as I though I was.

I did a lot of self reflecting on the drive back home. I think it is important for me not to feel ashamed for not being able to stay the whole trip (something I really wanted to do not just for the fun and sun, but to prove something to myself as well). I think it is important for me to recognize that I did my best and that I will continue to work on it. That does not mean I am not strong.

I will continue to work on techniques to manage my anxiety. I will continue to meditate and live in the present. I will continue to be grateful for the little things throughout my day.

And some day, when I am ready, I will try again!

-A

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.

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

 

My DIY Harry Potter Bedroom

I love Harry Potter. I grew up reading the books with my family, staying up late to go to the midnight premieres of all of the movies, and playing “Hogwarts” endlessly with my childhood friends.

When I hear the melody of “Hedwig’s Theme” my heart does a little flip of joy!

J.K. Rowling’s wizarding world was my childhood. These stories will always hold a very special place in my heart, and no matter how old I get I will never stop waiting for my Hogwarts acceptance letter!

When my husband and I bought our first home this past fall I did not plan on having a full-blown Harry Potter themed bedroom.

I had a few HP decor items and decided to put them all into one of our guest bedrooms. Then I kept finding more and more Harry Potter paraphernalia…a couple of candle sticks that look like they belong floating above the tables in the Great Hall, a wand from the Wizarding World of Harry Potter in Florida, a couple of antique bottles. Next thing I know I am staying up until the wee hours of the morning frantically crocheting Ravenclaw blankets, scouring the internet for Harry Potter trinkets, and making “potions” out of glitter and corn syrup…I’m a WIZARD HARRY!

So, I now am the proud keeper of the humble beginnings of a badass Harry Potter bedroom! Someday I will tweak it to make it a nursery, but for now it is all MINE! It is absolutely my favorite room in the house and I am so excited to continue to work on it and add to it!

I wanted to share some pictures of this fun little room! I will try to share where/how I made some of the key items!

Wands up!

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An authentic “Dumbledore’s Army” pin from the Wizarding World of Harry Potter at Universal Studios

 

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“Don’t Let the Muggles Get you Down” wall sticker – Amazon $10.00, Hufflepuff House Scarf – Amazon $25.00

Originally this room had a dresser (one of the items that inspired the Harry Potter transformation), this bed and the jewelry “organizer” seen in this photo. All of these items were brought with us from our townhouse to the new house.

It wasn’t hard to add a little magic to this part of the room with a hand crocheted Ravenclaw house blanket, a Hufflepuff house scarf, and one of my favorite quotes from Ron Weasley! I plan on adding house scarves from the other three houses to complete the look!

“Don’t Let the Muggles Get you Down” has been a very important quote for my family and friends this year. We participated in our first annual Walk MS Twin Cities this year to help raise awareness and money for all of those living with Multiple Sclerosis. I was diagnosed with Relapsing Remitting Multiple Sclerosis this year and because of my strong love for Harry Potter and the strength I have found throughout my life in these stories, we named our team Dumbledore’s Army. Click the link to check out our team bio!

Dumbledore’s Army ended up raising almost $20,000 towards finding a cure for this disease! The quote pictured on the wall in the above photo was also pictured on the back of our team shirts!

 

HufflepuffWe cannot wait to return next Spring for our second year with Walk MS Twin Cities, where Dumbledore’s Army will continue to fight for a cure!

 

 

 

 

 

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Map of Diagon Alley – Wizarding World of Harry Potter, Universal Studios 
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Hedwig – Amazon $9.00, Floating Shelves – Amazon $17.00, Gold Frame – Dollar Tree – $1.00, Ginny Weasley’s Wand – Universal Studios $40.00 

These shelving units were SO easy to install. They are a bit smaller than what I was expecting when I ordered them (I had originally wanted to put the books on them but they are too small for that).

The “9 3/4” sign was very easy (and fun!) to make!

Step 1 : Print out your image on a piece of regular paper
Step 2 : ‘Age’ the paper by brewing a cup of tea and pouring it over the paper (put the paper on a large dinner plate in the sink for this) and let that sit for about 20 minutes.
Step 3: “Wipe” all of the tea off the paper with your hand and allow the paper to dry for about 20 minutes on the plate
Step 4: Use a blow dryer to gently blow dry the paper. It will start to crinkle a bit on its own. Make sure you blow straight down with the paper on the plate! If you try to hold the paper up off the plate you will blow your paper apart!
Step 5: Once your paper is completely dry use a lighter to CAREFULLY burn the edges of the paper to give it that ancient finished look!

 

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This dresser and trunk were really the inspiration for this room! 

The dresser is an antique that has been handed down throughout my family. It is missing a few of the handles for the drawers and I plan on replacing those eventually, I am just waiting to come across the perfect ones!

I totally lucked out on this trunk! I scored this beautiful beast from a garage sale for $50.00. To answer my husbands first question…YES it was worth it!

P.S. It is currently housing a VERY special, white dress…talk about precious cargo!

 

 

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Ginny Weasley Quote – HomeGoods – $14.00 

I happened across this plaque when I was out running errands and thought it would be perfect for my Harry Potter inspired room.

This happens to be my husbands favorite part of the room as it doubles as an Multiple Sclerosis joke…got enough nerve…get it? I didn’t even think of that until he said it, but I kind of love it!

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As I continue to come across antique bottles and trinkets I snag them and add them to my ever-growing potions corner!

I created the vibrantly colored potions by mixing water with Mica Powder Pigments soap dye! I found out later that it actually works better to use corn syrup rather than water. It helps the pigments not to settle on the bottom of the bottles.

Another tip; super glue the corks in when you are finished to make your vials leak free!

Well I hope you enjoyed my little ‘work in progress’! I know I certainly do!

-A

 

 

A Poem for the Insomniacs

The pink and gold are streaming through the window.

The sun is sinking, melting slowly across the sky

Telling us the day is almost over, almost time to say ‘goodnight’.

 

I’ve been looking forward to my bed, so comfy and so warm,

Looking forward to the moment when I’ll pull the covers to my chin

And my journey off to dreamland surely will begin.

 

My head rests, it’s so comfy with my pillows and my dog snoring on the floor

The lights are out, and we have the temperature just right

I just know I’m going to get some damn good sleep tonight!

 

The seconds turn to minutes and then an hour has gone by

My eyes are drooping heavy, but my mind seems wide awake

I am tossing I am turning…I am thinking that last coffee was a mistake.

 

Insomnia, my old friend! How I love thee so!

I’ve tried everything to combat these tired and sleepless nights

I’ve taken my warm shower, meditated and turned out all the lights.

 

I have listened to a bedtime tale, and counted wooly sheep

I have stretched my legs and gotten up and gone on back to bed

I have even taken meds, but my brain chose “wide awake” instead.

 

It’s not that I’m not exhausted, because I truly am.

My limbs are tied to bowling balls and my eyelids feel like lead

But no matter what I do I’m restless, tossing and turning in this bed.

 

The moon stares through the window, telling me to close my eyes

The silence seems to roar, I should not be awake right now

The clock is mocking me, daring me to fall asleep somehow

 

We are a brotherhood of dream chasers, hunters of the ZZZ’s

We are united in our midnight thoughts and the sleepless fight,

Bonded by the early mornings bled from the late nights

 

We are nap takers, and coffee drinkers, we are the sleepless warriors

We have dark circles under our eyes and you may catch us in a yawn or two

We are the night owls, the sleepless zombies. Look around, we are all around you!

 

-A

 

TO SLEEP, OR NOT TO SLEEP? That is the freaking question!

Well, I have woken up to another day that I accidentally slept away the majority of. I always feel a mixture of guilt and embarrassment when this happens.

I usually wake up around 5:30am or 6:00am every morning with my dog. We get up, go outside, eat breakfast, and watch a TV show or two. I give myself my Glatiramer Acetate injection and take my meds. It’s a nice relaxing morning routine we are having. The issue is, without fail, by 10am I am so fatigued and exhausted that I can barely keep my eyes open. So I end up taking a nap around that time most days. I try to keep it in the 1-2 hour range so that I don’t sleep too much and disrupt my sleep pattern.

Anyone with insomnia knows how delicate those patterns can be; nap just a little too long, drink one caffeinated drink too many and  BAM! HELLO 3am and wide awake!

I have almost completely cut coffee out of my diet. Originally it was in hopes of combatting my insomnia. But lately I have been thinking about maybe starting to drink one or two cups in the morning just to try to combat that peak in fatigue each day. Does anyone have any tips for fatigue? What have you found to be helpful? I’d love to hear any advice/input!

I didn’t sleep well last night. I had insomnia and laid in bed for about 4 hours before I  worked myself into an anxiety attack, took a Xanax and finally passed out. Lovely, isn’t it. But naturally I still woke up at 7am. By the time 9am rolled around I was falling asleep on the couch…until 3pm…

These sleep problems are tough to figure out. I know that my body does need quite a bit of extra rest due to my Multiple Sclerosis. I also know that severe fatigue is one of my most significant issues relating to MS. It’s hard because part of me says “Don’t let the fatigue control you! Don’t sleep away your life!” and the other part is saying “For the love of god woman, take the freaking nap so we can at least function for the last half of our day!” Usually team nap wins.

One of my worries I’ve developed since I got sick has been that people will think I am lazy. It is so hard to explain this kind of fatigue to those who have never suffered from it. It’s so different from feeling tired or sleepy.

It’s ten-ton bones, muscles made out of silly putty, weights hooked to my eyelids, sick to my stomach, mind consuming, room spinning, body shaking exhaustion.

So on these days when my body takes over I try not to let myself feel too guilty about it. Obviously my body needed the rest, or it would not have slept for that long! I try not to worry that I did something wrong. Even on the days when I am doing nothing I am actually doing something huge. I am fighting a disease. I am surviving a chronic illness.

So yes, I may need to rest more than the average human from time to time. Yes, I am an adult who has regular (and scheduled) naps and yes, even though I am only 25 sometimes I have to miss out on fun stuff because my body physically just can’t do it that day. But that is ok!

I am also a warrior! I am also fighting my own immune system every single day! I am strong, even on my weak days!

-A