MS Strong

I’ll remember that phone call most likely all my life.

The one that stabbed into my heart and stuck there like a knife.

I woke up with no feeling in those fingers and my toes,

With no idea what havoc those small symptoms could expose.

 

You see them in the movies, or hear about them in a song,

Those moments when your ‘normal’ ends and the seconds just drag on.

No one can prepare you for that moment, for that day

When you find out that you’re sick, and it will never go away.

 

I first react in fear and panic, in shock and disbelief

Numbly listening to the doctor, my hands shake, why can’t I breathe?

It’s “indicative of MS”, “ok”, “do you know what that means?”

“No, not really.” My voice shakes, my heart is racing, please help me.

 

Multiple Sclerosis is what the doctor then explained.

All I heard was that it was in my spine and also in my brain.

Something in my body wasn’t right, was really wrong.

It’s funny but looking back, it had been that way so long

 

I held myself together, saying “everything’s alright”,

Until I broke down in the shower later on that night.

My husband sat beside me, as we cried there on the floor,

Knowing that from here on out it’d be so different from before.

 

We were right, and things have changed a lot in half a year.

MS has put some things on hold, like having a career.

It’s hard to work when you cannot stay awake

And the slightest change in weather makes your whole body start to ache.

 

But It hasn’t all been bad, these lessons that I’ve learned.

I’m proud of all my bruises and battle scars I’ve earned.

I’ve grown, and I am learning to live in the moment every day,

To connect to life around me, and let my heart show me the way.

 

I married my best friend on a cold night in late November

A night of love and family that we always will remember.

Those around us showed support and an avalanche of love.

Love is something this disease can never get rid of.

 

I faced some of my hardest nights, have felt so vulnerable, so scared,

But I learned that when you learn to ask, someone always will be there.

Some days I feel my weakest, and some days I feel so strong.

Some days the world feels right and some days everything goes wrong.

 

I will continue on this journey, I will continue on his fight.

I will use the gifts I’m given to spread awareness and shine light.

We’ll find a cure and I’ll keep singing my fight song.

Do you feel as good as I do now?

Because this is MS Strong.

How do you beat the heat?

Many people with Multiple Sclerosis suffer from heat sensitivity. Heat can actually cause symptoms of MS to temporarily worsen, recreating old flare ups! Doctors believe this is because the increase in body temperature causes the damaged nerves to fire even less effectively. Similarly, when someone with MS get’s a fever from an infection they can sometimes have a “pseudo relapse”, where old symptoms will flare up but then go away once your fever clears up. It only takes a couple of degrees increase to cause a whole world of issues in an MS’rs body.

For me just an hour or so in the heat can leave me feeling severely fatigued, nauseous, and I lose feeling and have numbness/tingling in the right side of my body. But I LOVE being outside in the sun so much! It’s great for my mental health, as well as the fact that I could use the vitamin D (I am also severely vitamin D deficient). I’ve developed a few tips and tricks to keep myself stay cool in the heat. So I don’t have to totally give up my time with my plants and dog outside!

  1. Stay hydrated. I always try to drink a lot of water, but when I know I am spending time in the heat I make sure to drink extra! I also pretty much never leave home without my water bottle anymore 🙂
  2. Take breaks. I try not to stay out in the direct sun for very long at all. Even if I am in the shade, and the temp is really hot, I make sure that I take frequent breaks in the air conditioning to make sure I don’t get too overheated.
  3. Sunscreen! I have a newly found passion for skin care. The two golden rules I have found are MOISTURIZE and PUT ON SUNSCREEN! Your skin will thank you!
  4. Stick to the shade. I try to adhere to this as much as possible. For example, yesterday when my husband and I went out to lunch we asked for a table on the patio but not in direct sunlight. We had to wait a little longer for a table, but the restaurant was happy to accommodate!
  5. My neck cooling “towel”. I got a cool little cooling device at this year’s Walk MS: Twin Cities. It’s basically a tiny scarf that you stick in the freezer and it get’s (and stays) nice and cold! I love to slap that baby on when I am gardening or reading outside!

 

Do you have any tips or tricks for staying cool in the summer heat?!? I would love to hear them!

Stay cool my friends 😉

-A

Birthday Weekend: Day 1

First things first, today marks the completion of my first week of Glatiramer Acetate injections. It was also a rough injection day. Maybe I wasn’t paying as much attention to what I was doing because ‘hey, this is my third time doing this in five days. I’m an old pro at this right?’ No, I am not.

I injected into my upper thigh today, as was planned in my “injection rotation planner”, but I must have had the depth setting too high because I ended up injecting into my muscle. Glatiramer Acetate is meant to be injected into the fatty layer before the muscle, and let me tell you, there is a reason why! It hurt like a mother trucker.

It didn’t help that I could not, for the life of me, find my heating pad this morning. My brain fog has me getting seriously forgetful over the past month or so. The other week I put ice cream in the fridge and didn’t know until I looked for it the next day only to discover that my ridiculously overpriced $4.99 gluten free, dairy free, soy free, nut free “ice cream” was now a lumpy sludge in the fridge. Shame. But this thing is LOST. My husband and I spent a good half hour scouring every corner (and yes, I looked in the fridge) for the hot pack and is nowhere to be found. And I literally used it two days ago!  I’m sure I’ll find it in some random place eventually

…unless it was stolen…I am looking at you Sparrow Mom.

Luckily, my husband was there to carry me to the couch and help me apply pressure and ice on my leg until the pain subsided enough for me to be able to crack a smile at some silly joke he was saying to try to distract me. And it worked, with his comfort, terrible jokes, and instant and caring reactions we got through my first injection stumble. I’m a lucky wife.

In other news, turn 25 on Sunday! I am so excited for this weekend. I have always loved birthdays. I love looking back at the past year and seeing how I have grown, how my life has changed, and the lessons I have learned. I love looking forward and the excitement and wonder of what another year will hold. Birthdays just make me happy. They celebrate life and all that comes with it!

My life has changed A LOT in this past year, and I can already tell that this weekend will not just be a regular birthday. This year I feel like I am feeling everything a little bit more. More love, more joy, more nostalgia, more gratitude for what I have; an amazing family and friends, my husband and even the medicine that I have access to that is giving me a chance at my new “normal”. My heart is dancing with all of the good vibes I am feeling today.

To start out my birthday weekend I would like to share some things I am thankful for in this past year.

  • I am thankful that my husband and I found a perfect neighborhood and home to establish our roots in.
  • I am thankful that even in the darkest times, just after my initial diagnosis, I learned an extremely powerful lesson. That no matter how much darkness is thrown at you the light of love will always shine through brighter.
  • I am thankful that the man of my dreams finally asked me to marry him 😉
  • I am thankful that I have been able to focus so much of my recent time and energy on getting healthier both physically and mentally.
  • I am thankful for the immense amount of support and love my family and friends, and even strangers, have shown me since my diagnosis of Multiple Sclerosis. Every single person who has reached out, prayed, walked in this years Walk MS: Twin Cities with “Dumbledore’s Army”, donated, sent good vibes or shared my story and MS awareness with others. I am thankful for you!

 

-A

When you realize a weed is actually a flower…

As I write today I have blisters and scratches all over my hands. I spent the morning outside weeding the front garden. As new homeowners, my husband and I are constantly surprised by things we never realized came along with owning a house. Things like having to call your first extermination service because there is a wasp infestation in your deck railings. Or the first time the upstairs toilet overflows. Or realizing that if you open the upstairs bedroom and bathroom windows at the same time your upstairs doors will all slam shut and scare the poops out of you! All of those lovely, first time homeowner memories will be cherished forever, I’m sure.

We bought our house in the fall last year, so we didn’t really get to see what the trees, flowers, plants around the house looked like in full bloom. Much to my surprise this spring, once our yard finally emerged from its icy blanket of snow I realized that we have quite the little garden started in our front yard! Unfortunately for said garden it took me about a month to realize that the plants growing were in fact intentional, not weeds. Now that I have realized my error (sorry flowers!) I decided it was time to get to work on weeding my garden and cleaning up the front of our house.

Again, knowing nothing about gardening I learned a very important lesson that I shall pass on to my children and my children’s children.

“When one weeds their garden, one must wear gloves, lest their hands will harden”. – A less wise me

Yep, once these blisters heal I intend on having some nice calloused hands to show off my gardening status!

Beginner…the status is beginner.

No matter, I am still proud of the work that I did today. It was hard, physical work, but in a way it was deeply cathartic. Yesterday we buried my husbands grandfather. It was a day full of family, sorrow, memories and love. It was truly a beautiful reminder of what is important in life. Faith, family and love.

As I was weeding the garden, early this morning, I couldn’t help but think. I thought about the past, namely the day before. I prayed for my husbands grandmother and the rest of the family as they process their grief and loss,  and that they will feel a healing in their souls.

I also thought about the present. As I continued to weed the garden the my body began to ache, it was getting warmer and I could feel my fatigue starting to take its toll. But each time I looked at my progress I felt such a sense of accomplishment that I forgot how tired I was. I forgot how easy it would be to just go inside and do this another day.

In those moments I felt weak I was finding comfort and strength in helping another living thing. By clearing out the dead branches and leaves around the roots of the plants to help them better grow. I felt comforted by watering the flowers as the hot sun threatened them and by sweeping off the path walking up to our front door, creating a welcoming pathway.

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By the way, while I was doing this I found and AMAZING pink rock. It’s a bit bigger than my fist and beautiful. I put it on our front step. Talk about good energies!

 

Even though the work was tiring and physically demanding, it energized me to be taking care of nature and allowing myself to only worry about one task at a time.

I think that we can think of our own minds as a garden. We need to nourish it, feed it, and care for it to help it grow. And it won’t always be butterflies and rainbows. It tough work. But good work.

Whether it be through reading, writing, gardening, doing an activity you enjoy or learning about a new subject that interests you, I think it is important to keep growing our minds, no matter how stressful or how busy our lives get. We need to remember to take the time to stop and ask ourselves how we are doing. Check in with your body and mind and give it the care it needs! And always remember that you are not alone. There are always people who care about you and appreciate you and think of you. Even if you don’t know it.

I am wishing everyone peaceful minds today and an evening full of love and comfort.

-A

 

First Injection Day: √

Today was the big day, injection training! For those of you who have read my blog before you know that I was recently diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). Since my diagnosis I have had a lot to wrap my mind around. As someone who suffers from some pretty intense anxiety to begin with, it has been…challenging to put it kindly. But one thing that I have been working up the courage for was beginning a disease modifying drug.

Disease modifying drugs work to slow down the progression of MS. There are various drugs (I think 15? currently on the market in the US) that can be used to slow the progression of this disease. These drugs range in effectiveness, risks, and the methods in which they are administered/how they work in the body.

There is no cure for Multiple Sclerosis. There is no way to undo the damage, if permanent nerve damage has already occurred. One of the biggest misunderstandings I had (and I think many people would have) about the treatment I am starting is that it does not make you feel better. It doesn’t really alleviate any symptoms, rather it gives your immune system something different to attack rather than your own myelin (protective covering of the nerves. Think of someone with MS as having a cellphone charger with the wires exposed). The hope of this treatment is that it will slow the progression of my disease and delay my next relapse or attack of symptoms, maybe by months…maybe by years!

The treatment I chose to start with is Glatiramer Acetate (the generic form of Copaxone). Glatiramer Acetate has minimal side effects, mostly confined to the injection site and does not cause long-term damage/risks to the reproductive organs. This was really important to me. I have already lost so much to this disease, I didn’t want to risk losing my future family too. So I wanted to try this less aggressive, albeit sometimes less effective, treatment option first. This drug is injected into the fatty layer under the skin either daily or three times a week, depending on dosage.

I’ve been trying to wrap my mind around giving myself shots for a while now (pretty much since I started researching treatment options last fall) and have been rather nervous about it. All it would take was the image of myself pushing a needle into my own tummy and my vision would go dark, hands and feet go numb and the room starts to spin (funny, those are all MS symptoms too! Yay anxiety, double the fun for me!) I tried to comfort myself by reminding myself that I would be thoroughly trained on how to safely inject, I would have my husband to help me if I really was that squeamish at the end of the day, and that when it comes down to it I could just inject in other body parts that made me feel less freaked out.

But all the self soothing in the world couldn’t keep that bossy voice of anxiety from running her mouth in the back of my mind.

But this morning came, and so did the nurse to show me how to tackle my newest MS challenge.

I just have to give a shout out to my nurse, who did an absolutely amazing job teaching me everything I needed to know and making sure I felt comfortable and ready to give my self my first ever injection.  And that is just what I did, and in my tummy no less! I decided that if I am going to face this fear I am going to face it head on!

It wasn’t too bad! The injection itself just felt like any shot does. There was some pretty strong stinging and burning for a few minutes after, while the injection spread, but it passed within a few minutes. As I write this, the only indication that I had such a life changing morning is a slight ache in my abdomen and a tiny dot where the needle went in. That’s it.

It’s funny. There are many moments when our lives change forever, and they pass without us even realizing them. Moments when we fall in love, take a stand or face a challenge. Sometimes they’re big, sometimes they are small. As small as pushing a button and a tiny needle injecting you with not just a medicine, but hope.

Hope that this disease won’t progress. Hope that I’ll have many years of health ahead of me. Hope that I’ll grow nice and old and have a family of my own to watch grow up too. Hope that one day I can look back at this time of my life and be proud of the bravery I showed, even when I felt like hiding. Hope that one day we won’t be on here talking about a treatment, we will be talking about the cure.

Until then, I will continue to learn each day, to cherish the peaceful moments and to fill my heart and the hearts of those around me with as much love and positivity as I can muster.

-A

“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” – Albus Dumbledore

silhouette photo of trees during night time
Photo by Miriam Espacio on Pexels.com

Happy with a headache…

I have a headache. It’s funny, for someone who has a disease that affects my brain I don’t, and never have, had a lot of headaches. Growing up I can probably count on one hand the number of times I remember having a headache. Starting about two years ago I started getting periods of time where I would get headaches of various intensities quite often. Then I’d go months and months without one again. I’m in a headache period right now!

My husband was sick this weekend (finally feeling better this evening) so I am crossing my fingers that this is just a stress headache and not my already struggling immune system giving in to whatever virus he brought home.

I start my injections tomorrow, so I am pretty anxious about that. I played around with my “whisper inject” (automatic injector) without any actual needles/syringes and watched/read all the “how to” materials again. I wouldn’t say my anxious feelings are negative or bad feelings. They are more the healthy kind of nerves and tension that I always feel before a new medical procedure. It’s just anxiety watching out for me and wanting to make sure everything is safe and ‘ok’ before I try this new thus scary thing. But anxiety, I got you girl, I’ve done my homework, I’ve got a nurse coming to my home for the first injection and I will be OK! (positive thoughts!)

Ok, I HAVE to update ya’ll on the Sparrow Mom situation. WE HAVE CHICKLETS. I repeat! We have a birth…multiple births…hatches? Anyways, my (taller than the average human) husband walked past my hanging basket of African Daisy’s today and casually said “Oh, they’re alive. Watch out when you water this”.

Seeing as I was not bestowed with his same gift of height I, precariously, balanced on a patio chair and held my phone up so I could take a picture and “see” these “live” birds! And behold….sure as shoot Sparrow Mom is gonna be a busy ladybird from here on out!

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Don’t worry, I was very careful not to touch the plant/nest or disturb them at all!

So as anxious as I am tonight, for what tomorrow holds, this was mother natures way of reminding me to stop and take in all the beauty and life around me! It completely made my day. And I have to say that I am, in general, very proud of my plant and animal babies today.

 

One of these packages looks more fun than the other…

I love the mail.

I love receiving letters in the mail, I love sending them. I love getting packages in the mail and opening them up, sending care packages to people! Yes, you have to sift through some junk to get to the good stuff sometimes, but isn’t that the same in everything in life!

As an adult I started getting more of “the junk” in the mail. Bills, advertisements, ads for stores I’ve never even shopped at. But I also started getting some fun stuff too! I get wedding invitations, baby announcements, Christmas cards! That’s kind of how my life has been lately. I’ve started getting a little more of the crappy stuff (MS diagnosis, intense anxiety etc) but I’ve also started getting a whole lot more of the wonderful stuff (a husband, a supportive family, a house and a goon of a dog).

For my birthday this year my husband got me a subscription for Ipsy. I am really excited to try out some new beauty supplies each month! Since my diagnosis I have been struggling with the way I view myself. I lost a lot of weight (not intentionally), began having the worst acne of my life (seriously, this shit makes my teenage years look like beauty marks!) and for a while, when I was feeling really sick, I just kind of gave up.

I have always enjoyed makeup and beauty products, getting my nails done and all that jazz, but this winter I was so preoccupied with the shock of my diagnosis that I fell into a no bra, all day pj wearing, throw my hair into a nest of a bun at the top of my head situation…like Sparrow Mom was considering my hair prime real-estate at one point…

Now don’t get me wrong, there is NOTHING wrong with no bra, all day pj’s and having a tangle of hair fit for housing birds and other small creatures on the top of your head! I love those days. That still is me most days.

In fact, the only reason I am not wearing my pajamas right now is because I had to drag my butt away from my Harry Potter marathon and run some errands today.

I am totally supportive of rocking whatever look makes you feel good! The issue was, I was starting to not feel good about myself. I read a post someone wrote about depression and getting yourself out of a tough patch and one of the tips was “Have you showered today? If the answer is no, go shower. Right now.” It really made me realize that I was feeling crappy about myself on the inside (still coming to terms with the fact that a part of my body was attacking another part) and was letting anxiety and negativity control my life so much that I had stopped doing some of the basic things that made me feel good.

Again, I come back to the power of our thoughts and intentions. One small thing I could do to make myself feel better was to take care of myself, starting on the outside. Spring was just around the corner and I started making sure I established my self-care routine again. I used essential oils to make my showers even more relaxing and enjoyable. I made sure I put on an outfit I liked every day  even though I was no longer working at this point and most days wasn’t seeing anyone but my husband and Sir Mac N Cheese, it just made me feel a little more like myself again.

Now I am really getting into taking care of myself not just on the outside but on the inside too!

I’ve started a skin care routine (any other MS Warriors struggle with acne?…I’m thinking my stress levels and two rounds of steroid infusion therapy in 3 months kind of had something to do with it? I’d love to hear your tips and tricks!)

I’ve started taking pride in myself, both inside and out, and I’ve started an “internal makeover”, one could say. I am actively making sure that I keep that icky negative energy out (as best I can) and soak up as much positivity as I possibly can. So anyways, I’m pumped about this beauty package today.

But I got more than one package today. I got my first shipment of Glatiramer Acetate injections as well as my auto injector and training kit. Yeah…that package was slightly less fun to receive than my other one.

I spent the beginning of this afternoon reading and watching the training materials the drug company sent and organizing my “medicine cabinet” (which is starting to look like a small pharmacy) and trying to get myself prepared for Monday, when I start the injections. I will say, that after watching the training videos and seeing how the auto injector works I am feeling slightly less nervous about injecting myself…SLIGHTLY. I’m still thinking it will take some time (and probably an emotional breakdown or two) before I get used to it. But, that’s just it. I will get used to it. Someday. It helps to have a trained nurse coming to our home to teach my husband and I for the first day.

I will write my thoughts on my first experience with injections sometime next week, I am sure 🙂