My healing comes in steady waves.
So inconspicuous it could go unnoticed if one wasn’t aware.
Like the second hand on an old clock
I tick slowly on, in minute and determined movements.
The forward movement is so small it could go unnoticed by the naked eye.
Until you glance away, and back again, and see how far I have already come.
What do you think of when you think the word ‘Brave’?
Do you think of knights or warriors or heroes in capes?
Or do you think of everyday people of all sizes and all shapes?
Brave is waking up each morning, willing to face the challenges of the day.
It is looking your problems in the face, but never backing down.
It is letting a smile sneak through when all your heart can do is frown.
Brave is walking through a valley of fear and doubt and pain.
It is silencing all of the ‘what if’s” smacking around inside your brain.
And somehow calming the restless and anxious soul and letting a racing mind unwind.
Brave is showing up to the doctor’s appointment
Even though you are afraid of what they might find.
It is learning to leave the demons of your past behind.
Brave is taking a deep breath in… and letting it out again.
Brave is admitting when you need help, that you can’t do it on your own.
It is making it through the night when it’s dark and you’re all alone.
Brave is smiling through the tears that are streaming down your face.
And cracking jokes in hospital rooms to ease your loved one’s fear.
Brave is accepting words of help, even when it’s not what you want to hear.
Brave is pulling yourself back up to standing, after you’ve taken your hundredth fall.
It is not beating yourself up for the times you showed your pain.
Brave does not mean that you are not scared, that your heart does not race,
and your hands don’t shake, they do.
Brave is feeling all of the fear and stepping forward anyways.
Brave is one foot in front of the other, one step at a time.
Brave is being patient for the change you need, trusting that the stars will align.
Brave can look at you with fear in her eyes, a quiver in her voice.
Brave can break down and be a monstrous mess
But brave knows that eventually, life will coalesce.
Brave is the woman at the clinic, or the man who limps slowly down the street.
Brave is the family in the waiting room, or the patient in the bed.
Brave is the battles we have won in the past, and the ones that lay ahead.
Brave is falling into bed after a hellish kind of day.
And telling yourself that even though it was so hard, it’s going to be ok.
Braving is reminding yourself that tomorrow is a brand new day.
Brave doesn’t always shock and awe.
Brave can be quite simple and quite small.
And sometimes those little tiny steps are the bravest of them all.
-A
The past two weeks have been rough. Very rough. It’s taken me a while to even work up the courage to write this post.
Two weeks ago I started feeling really crummy. I came down with some sort of stomach bug. It sucked, but it was just a stomach bug, I knew it would end. A few days passed…and then a few more. Before I knew it I had been down and out for a solid week. I woke up that next morning to something that I had never experienced before. My whole body was shaking. It wasn’t just shivering, it was violent, uncontrollable shakes wracking through my entire body. I would later find out that this phenominon is called Rigors.
At first my husband and I thought I was just cold. We cranked up the heat, layered clothes onto me, and piled on the blankets. But the shaking just continued. In fact, it got worse. The next day I emailed my doctor asking for advice. I’ve had chills before when I have had the flu, but never like that. My doctor suggested that I be seen that day.
I went in, got some meds. They did some tests and assured me that I had an infection and with some antibiotics I would be fine. Fast forward two days and I could barely walk anymore. My body was exhausted, I was exhausted, and to be honest, I was scared. Really scared.
I ended up spending the day in ER getting fluids and more tests than I could count. Again, they ruled out everything (this time also ruling out an infection, and advising me to stop taking the antibiotics). My heart rate was high, and I was running fever so the ER doc gave me the option of going home and trying to rest, or being admitted overnight for observation. I chose to go home, and try to get some sleep. I felt like that was what my body was needing the most. Looking back, I wish I had stayed.
Two days later I was back in the ER for more fluids and tests. This time I was put on a drug combination of Reglan and Benadryl. The Reglan to help with nausea, the Benadryl to help counteract the side effects of the Reglan. I was so tired of being sick at this point, that I didn’t even question what these side effects could be.
“Reglan can make you a little restless.” The doctor had said.
Well, it did. But it was manageable for the first day. I felt uncomfortably wired, but the Benadryl took the edge off. But that night I barely slept. I had the worst Insomnia of my life. The next morning it only got worse.
I started feeling incredibly anxious. I didn’t feel like myself at all. I could feel every racing beat of my heart pounding against my ribcage and rattling my entire chest. I couldn’t focus on anything, I couldn’t stop moving. I felt like I was dying.
It turns out I was having a severe adverse reaction to the Reglan. My heart rate continued to run high and my body was going completely haywire. It was worse than anything I have ever felt, including from Steroid Infusion Therapy, which anyone who has had done can tell you is not a ride in the park.
I was scared before, now I was terrified.
I ended up being admitted to the hospital due to the extreme adverse reaction to Reglan. Luckily I was able to go home the next day. It’s been four days since I last took the Reglan (and I only took it for one day) and I am still having waves of extreme anxiety and racing heart, although less frequently and intense each day.
It turns out this is not an unheard of reaction to the drug. Although uncommon, it can cause this type of response in some people. My chart now has Reglan listed under my drug allergies.
These past two weeks are a blur of pain, fear, stress, anxiety and tears. I’m having a hard time moving past these painful memories. I know that it is in the past, and that I will never take that drug again so I will never have that reaction to it again, but I am still scared.
It is hard to admit that I am shaken, that I wasn’t able to just bounce right back like I usually do. It’s not easy to talk about things that caused such pain. And it is definitely not easy to look this kind of anxiety in the face and tell it to fuck off.
But admitting I am scared is nothing to be ashamed of as long I don’t give up. As long as I keep my head up and keep moving forward. As hard as the past two weeks have been, I did make it through.
I proved to myself that my body and my mind are strong. No, they are not perfect. But they can take a few punches and stand up again. I might not stand up gracefully, or quickly but I will stand.
So with shaking hands, but a determined heart I look forward to a new week full of smiles, healing, positivity and growth.
-A
I have been a terrible blogger the past couple of weeks. As in…I have not blogged.
I have been sick for over a week now with some sort of cold. Before MS a cold was no fun and made me feel like crap, but I feel like after a couple of days I would bounce back and just have a stuffy nose or other minor symptoms. That is NOT the case with this cold. I have been feeling solidly ill for the entire week.
Fellow MS’ers, have you experienced an increase of severity in your cold/flu symptoms since your diagnoses? Other than loading up on meds, what are your tips and tricks for when you are “down and out” due to illness?
I have been meaning to write a blog post every day this week, but I have just been so fatigued I haven’t been able to write much at all, let alone anything to post! I am hoping to bounce back from this sickness soon and I will think of something really special to write about!
I just wanted to check in with all of my friends on the blogosphere and wish you all a happy Monday.
I hope you are all staying warm (for my fellow northerners) and cozy today!
🤒 – A
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.
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!
I have struggled with anxiety since I was a young teen. I have had times in my life where it was almost non-existent, and times when it felt like it was smothering me slowly. I have utilized many different approaches to help ease my anxiety. I have found that what works best for me is working with a psychiatrist for medication, self-reflection and meditation, creative outlets like writing and singing, and professional counseling with a counselor that I have a good and trusting relationship with. All of those things take time and it can be a bit of a hunt to find the right people/techniques for you, but don’t give up!
I recently had a therapist tell me that my anxiety was controlling my life. They told me that it was affecting me, my ability to enjoy life, and my relationships with others. They reminded me that by allowing my anxiety to make decisions for me (like leaving a vacation early) I am affecting not just myself, but my husband as well. Which is true. I didn’t leave the trip alone, my husband came with me because we always have each other’s backs. But he deserves a full vacation too!
Being reminded of all of those things hurt profoundly. It is not easy to recognize your failures and shortcomings. It’s even harder to have them spoken aloud by others and to know deep down that they are right.
While I did not agree with this person’s recommendations on how I fix the problem, I did take away the very important lesson they taught me, and for that I am grateful!
It was kind of like I closed a chapter in my mind. It was a chapter titled “Anxiety: The Boss”. As if a switch flipped in my mind, I decided ‘No More!’
I was done letting my life slip by while I worried about it from the corners of my mind. I was ready to step back into the spotlight of my life and enjoy it!
My diagnosis of Multiple Sclerosis this past fall really thew me into a whirlwind of emotions, and rightfully so! I went through (and probably am still going through) a full process of grieving. Grieving for the life that I always had thought I would have, which had now drastically changed in the blink of an eye.
I am still trying to navigate this new world I’ve been thrown into, and sometimes it’s a lot scarier than others. Imagine walking around with a cement block tied to a balloon on a string dangling above your head. You know that eventually the string will break, or the balloon will run out of air and the block will fall on you, but there is no way to know when. So each day you wake up to unknown. Wondering, I wonder what my body will be like today.
It is no wonder that people with Multiple Sclerosis often have anxiety and/or depression! Not to mention the mood changes that can come as a result of MS.
All of these fears have been causing me to want to hide inside. To keep myself safe, and not do anything that might cause me to get stressed out, or sick, or overheated and cause a relapse. But when that switch in my mind flipped I realized that I am OK right now!
I have 95% of my mobility, I just need to remember to take it slow and use railings etc to prevent falls! I have my sight, my speech! I am extremely lucky as far as MS goes.
Yes, my chronic fatigue can cause some nasty symptoms. And I stumble over my numb foot every now and then, but as long as I plan my days accordingly (meaning giving myself nap time😋 and a rest day soon afterwards) I can still do SO much!
So this weekend I did not one, but two things that challenged my anxiety, and proved to myself that my body can handle some fun and adventure!
I saw Taylor Swift’s Reputation Tour on Friday night with my sister. We have been to all of her concerts together since Speak Now (2010), which is one of our favorite “sister traditions”.
After my diagnosis I was worried that I would not be able to make it to the tour this year. Stadium crowds, the noise and the lights can all cause overstimulation resulting in my dizziness and vision issues really kicking in. Not to mention, large crowds can cause claustrophobia for me.
Having that ‘kick in the ass’ earlier this week, I went into this weekend telling my anxiety that I was in control! This is my life, and I am going to enjoy it, dammit!
I had a wonderful time with my sister at the concert and was able to get through my claustrophobia with crowd using some simple breathing techniques!
The next day I went to the Minnesota State Fair with my husband and some of our friends! More big crowds! Again, I proved to myself that I could do it, and it was fun!
All in all, I’m feeling pretty damn proud of myself. I am excited to continue with this positive energy flow I am on! I am so grateful for this change in perspective and the adventures that it could bring!
I am pretty wiped out today, after my weekend of fun! But it’s a stormy day here in the mini-apple and perfect for resting, recharging my spoons, and snuggling with my boys!
Wishing you all some peace, relaxation and joy this wonderful day ❤️ – A
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.
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
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
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
Alix in Wonderland 