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

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…

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

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

 

The Spoon Theory

Most likely if you, or a loved one is living with an autoimmune disease you have heard of the “Spoon Theory”. When I was first diagnosed I came across this theory when I was working to educate myself about Multiple Sclerosis. People living with an autoimmune disease experience high levels of fatigue. Unlike normal tiredness, this fatigue is all-consuming and cannot be warded off with a simple cup of coffee or a quick nap. It is bone aching, lead eyelids, energy sucking exhaustion. When fatigue hits we really don’t have any other option than to rest. It’s not a suggestion from our bodies, it’s a demand.

The spoon theory was created by Christine Miserandino in an essay she wrote in 2003. She used spoons as a physical representation of the amount of energy we have available to us to complete activities in our daily lives.

Imagine that you only had 12 spoons, that’s what people with MS get. 12 spoons to get you through your whole day. Waking up costs you one spoon, showering is two, getting dressed is two, eating is one. That’s half of your spoons gone before you have even walked out the door in the morning!

That is why people living with chronic or autoimmune diseases need to plan their activities carefully. Prioritize things that need to get done for early in the day in case we run out of spoons by 1pm. That is why it makes working full-time hard for many people. That is why sometimes we have to put rest first.

Spoons can be replenished by getting a full night’s sleep. The caveat here is that many people living with autoimmune diseases suffer from sleep issues such as insomnia or pain that keeps them from getting a good night’s sleep. This can cause us to go even further in the hole with our spoons! We can borrow spoons from future days if needed but those spoons will eventually need to be replaced by taking rest days. That is why it is important, I am learning, to make sure I plan a couple of days of “nothing” after any big events or holiday weekends.

So when I say I am low on spoons, now you know I’m not just begging you for free silverware!…but maybe a nap…

-A

Stronger than you think.

This weekend I tackled something that I have been dreading ever since I got sick last fall. I went to a big social event and I stayed the whole time! On top of that, I had so much fun!

My husband and I attended our friends’ wedding this weekend. Leading up to the day I was pretty nervous. This would be my first big “social outing” pretty much since my diagnosis of Multiple Sclerosis last fall.

Even before my diagnosis I would always get a little bit nervous before going to parties or events where there would be big crowds and lots of noise. Shortly after I found out I had MS my husband and I tried to go to a Timberwolves basketball game and we ended up leaving before the game even started due to me having a massive panic attack. I just couldn’t handle the noise of the crowd, the feeling of having so many people close to me, and the claustrophobia brought on by being enclosed in a building with so many people and limited exits.

Since then my social anxiety has grown more and more. What if I don’t feel well at the event, what if I need to leave but can’t find a socially acceptable way to do so? What if I push myself too hard and have another relapse? What if I have a panic attack in front of everyone? My mind just races to the worst possible scenarios, if I don’t actively work to calm myself down.

My energy levels still have not bounced back completely, so I was also uncertain as to how my body would react to an “all day” event.

But after all of that worry, I had a wonderful time with our friends and honestly didn’t feel too much fatigue/weakness the day of the wedding. I made sure that I stayed hydrated and limited my alcohol, and I kept cool by staying in the air conditioning as much as possible. I think I had so much else going on, and was focused on all of the love and joy around me that I forgot that I was even worried about “what my body could handle”.

I forgot that I had MS. That was really great feeling.

Laughing with friends, chatting with people I hadn’t seen in a while and dancing with my husband just filled my heart with so much positivity and happiness.

Now don’t get me wrong, my big weekend didn’t come without some price to pay. I am pretty sure I slept the entire day on Sunday, only waking up to eat and go to the bathroom. This morning I was pretty exhausted still. But I listened to my body and took a nice little morning nap (is that even a thing?). Slowly but surely, I can feel my energy coming back to me.

Even though MS does limit me physically at times, I am learning how to balance this disability and my life. I am learning that sometimes it is worth it to use a little more energy for a special occasion, I just need to plan on having a couple of “rest days” afterwards to allow myself to recover.

Multiple Sclerosis makes life more difficult, that is for sure. But it also has pushed me to realize that I am stronger than I ever knew I was. I can face the things that scare me and come out the other side smiling.

I am working on continuing to express myself and my emotions/experiences through creative outlets. Today I tried singing for the first time in a long time. It felt so good! I will say that I was surprised how tired just singing a few songs made me, but it was worth it!

I thought that a cover of “Titanium” expressed perfectly how I am feeling about my MS right now. It’s tough, I am fighting every day, but I am strong.

 

Moments of Silence

Moments of silence, moments of peace

I live for them as they recharge

My internal battery that always seems to be running on empty

Another thing I can chalk up to my disease.

 

Life can seem so hectic, even when you’re standing still

The moments become memories right before your eyes

It doesn’t matter if you’re moving too

Even if you cannot move the world certainly will.

 

My hands smell like a hospital or a clinic room at best

Sterile and clean in a way that bites my nose

And there are bruises on my arms

And the rest of me is waiting for the results of all those tests.

 

“Please make a fist, now I’ll just find a real good vein”

I’m a pro at this, I think, I’ve done it a thousand times

But I still look away from the needle, and don’t look right at the blood

It seems the only thing I’m really used to is the pain.

 

The blood is gone, the tests are done, and the pee is in a cup

Now I wait here wondering if I’ll get a phone call like before

One that changes life forever, or shocks me through and through

One that makes my blood run cold or tells me time is up.

 

But as I sit here on the deck, my dog sleeping on my feet

The sun shines down on both of us warming up our souls

I smile and enjoy this moment, and appreciate my life

Because these bruises are my armor against any fate I meet.

 

All the pain in life has lessons, if you look just close enough

All your suffering will make you brave and strong

So, do not let your heart grow heavy, and never think that you are weak

For the times that were so hard on you have made you really tough.

 

A day in my body, one that is tired and autoimmune, will teach you many things

It will teach you to stand strong, when the foulest winds will blow

It will teach that you have courage that you never knew before

It will teach you to see the joy and the beauty that life will bring

And most of all it will teach that you can fight

and you can get through anything.

-A

Exhausted is an Understatement

I am emotionally and physically exhausted. This past month has been hard. Between starting injections, fighting off a relapse (or whatever this is), trying to manage pain, working through anxiety issues, death in the family and the political unrest and instability that our sentient Cheeto of a president is encouraging… let’s just say it has been a rough month or so.

I wasn’t going to write a post today because I was feeling so down. I had a bad injection this morning that caused some swelling and much more discomfort than usual.

Swelling from injection 😦

Mom, don’t worry, I sent a pic to my doctor and he said it was most likely just not injected deep enough! But if it happens again we may need to rethink Glartiramer Acetate…I feel like when I have a bad injection day it just kind of starts my day off shitty.

I’m not a betting gal, but I would put money down that anyone who has to stab themselves and inject a foreign substance into their body for their immune system to attack would probably describe the experience using a similar vernacular.

I’ve been extremely fatigued this past week or so. I didn’t think my fatigue could increase more from where it was at, but my body never ceases to prove me wrong. I feel down about myself because I have been so weak, and so tired. I have a pretty strong sense of self, but I can’t help but feel bad about myself when all I can do is sleep 15 hours a day and still need at least one nap to keep me going for the few hours I am awake.

It’s frustrating to watch my life pass by and to be too tired, or sick, or anxious to be able to actively participate in it.

I didn’t want to write this post because I try to be positive and I knew I didn’t have much positivity in me today. But then I talked to my therapist and she reminded me that this is my truth. People need to know that not every day is full of positivity and success and joy. Some days are hard. Some days you cry. Some days you hurt. And that is ok. That is human.

I know I am a strong woman. I wouldn’t be able to fight this fight if I wasn’t, but that doesn’t mean that I am not allowed to have my weak moments. No matter how strong we are, we all have days that knock us to our knees. What matters most is that we get back up again. It’s ok if we stay down on our knees for a little while, it’s ok to be sad and frustrated sometimes. I know that things will get better.

I hope that wherever you are on your journey today that you are able to find strength and remember that even at the end of the longest and darkest of nights the sun will always rise in the morning.

-A