Dear MS…

Dear Multiple Sclerosis,

We’ve been seeing each other for quite a few months now, but I know it is just the beginning of our relationship. When we first met I didn’t know much about you. I had heard your name before but never really given you much thought. But then you showed up one morning and changed my life forever.

You brought with you some of your not so pleasant friends. You know the ones I am talking about…numbness, tingling, lesions, burning, dizziness, and fatigue to name a few. You introduced me to steroid infusions, injections and MRI’s. I can’t say I’m a huge fan of those guys either.

You scared me more than I have ever been frightened before. You make me feel weak. You make me feel sick. You make me feel isolated and anxious. You took away my trust in my body.

You’ve been a tough pill to swallow. I’ve hated you, been bruised for you, and miss out on fun things for you, when you demanded it.

But I have not given in to you. I won’t ever stop fighting you. You may be a part of me now, but you are not what makes me me. 

Despite your efforts, I have stood back up each time you’ve knocked me down. I have learned that I am stronger than I ever knew I was. You have taught me take my body seriously. To listen when it’s signaling to me that something is off. To focus on the positive more than the negative.

I have learned that even on my sickest days, I have people around me who will support and care for me. That I am never alone. I have learned that the power of love will shine bright enough to light up even the darkest of nights and frighten away even the most ghoulish of nightmares. I have learned to be courageous, even when I don’t want to be.

I have learned to take things a little slower and enjoy each minute. To stop and appreciate the everyday things and the beauty all around me. I have learned to love more fiercely, to be more quick to forgiveness and slow to anger. I have gained a compassion for life and the miracle that it is!

So in the end…I cannot hate you. For what use would that be? I’ve chosen to grow, rather than sit still. I’ve chosen to be inspired, rather than be afraid. I have chosen to fight. My life is still my life.

Sincerely,

Mrs. MS Strong

 

Pain, Pain, go away…

The past week or so has been rough for me. I have been experiencing the MS hug, extreme fatigue (I’ve only felt it this severely once before), weakness, stomach problems, muscle spasms and shaking, and pain in my limbs, back, and chest.

I’ve been in contact with my doctors, so they know what is going on. My neurologist said I could be having a worsening of symptoms because the injections are working and as my nerves get a chance to heal they are misfiring more rapidly, and that it will pass in time. Other possibilities are an underlying infection causing a flare up, or an actual flare up. So I am really rooting for the first option!

When I get this sick I have noticed that my anxiety seems to use the time to take center stage in my thoughts. I start worrying that I will never feel better this time, that people think I am just lazy and don’t understand what I am going through, I worry that I am dying. I know that none of those things are true. That they are just the negative ideas and words of my anxiety. But it’s hard to just stop those thoughts when anxiety can be SO LOUD.

I know that I am stronger than this disease. I have bounced back from this before, and I will do it again. I just wish there was a little more certainty around Multiple Sclerosis. The unknown is a very scary thing. But I am arming myself for battle with my armor of blankets, my shield of heating pads, my noble steed Sir Mac N Cheese. But the most important thing I have to help me fight this battle is the love, positive energy, and caring actions and thoughts of my husband, family, friends, and all of you!

Let’s keep fighting this thing!

-A

MS, Sushi and Heating Pads

I just want to thank everyone who reached out to me after my last blog post where I talked about the discomfort I have been feeling lately. Learning to trust my body again Hearing people who have experienced the same symptoms share their stories with me is so comforting.

Another thank you to those who reached out with words of comfort, or just letting me know they are sending good vibes and prayers my way. All of these things are like medicine for my soul!

MS can feel really lonely at times. I know that I am very newly diagnosed, but I already have felt the loneliness and loss that comes along with the diagnosis. I’ve felt it when I have been too sick or too fatigued to attend a social outing with friends, I have felt it when I have to leave a dinner or hanging out with friends and family earlier than everyone else because the room is spinning and I am afraid of getting sick in someone else’s home. I am afraid that some day the invitations will stop coming. Just because I don’t end up going out doesn’t mean that I don’t want to. I truly appreciate the invitation. It means you haven’t forgotten me, that you still want me around (even though I might not be my usually bubbly, outgoing self some days), it means you haven’t gotten bored with me always being sick. So thank you.

Today I went out for lunch with my sister and two good friends for her birthday. We had sushi and it was lovely. I have a lot of food allergies (wheat, soy, nuts, sesame, dairy) but praise the lord, I can still eat rice, seaweed and fish! Yes, my options are a bit limited and I have to make sure the restaurant can accommodate my sesame allergies before ordering, but I still get to enjoy a good salmon roll every now and then!

It was great to catch up with my sister and our friends. It was one of those moments where I forgot I had MS and was just enjoying myself. I also treated myself to a manicure today as my husband and I are getting photos taken together tomorrow! I can’t wait! I’ve never had professional photo shoot like this and it’s not supposed to be too hot tomorrow, so it should be a blast. Lastly, I stopped at the local Chuck & Dons and got my dog a new bone. He’s a 100lb german shepherd/husky mix and it’s been raining for a whole day so I figured I would do us both a favor and get him a rainy day treat 😉

I am still experiencing some issues with muscle pain and tightness (I think I’m receiving a nice little “hug” from MS) but I went to Target yesterday and got myself an electric heating pad for my back and that thing is a miracle worker! My issue now is that I am in a constant battle of giving my back some relief from the pain and getting too hot and making myself feel fatigued and loopy. So I am alternating between the two. I can’t complain, at least I found some temporary relief for my back pain! Now I just need an ice pack to cool myself down!

Now for the stuff that really matters: Sparrow Mom and her babies have taken the great leap of faith and flow from the nest. It’s so touching watching my little fluff babies grow up and fly off to live lives of their own! I have put a “for sale” sign in the African Daisy’s and am currently accepting applicants for a new tenant. Rent free, just no eating my succulents!

 

 

-A

 

 

 

 

 

Learning to trust my body again

I haven’t been feeling well this week. For the past few days I have had a huge spike in my fatigue. The kind where just taking a shower or putting a load of laundry in the machine leaves me feeling sick and ready for a three-hour nap. I can feel that I am weaker than normal and have been losing my balance and getting spells of dizziness and nausea.

I’ve also been experiencing a new feeling that I can only chalk up to Multiple Sclerosis. It feels like my diaphragm and muscles around my rib cage are squeezing my whole torso like a python. It doesn’t really affect my breathing as much as it is painful. All the muscles wrapping around ribs and back just hurt.

I’ve tried to ignore it and just deal with it, because what else can I do right? There’s no way to tell for sure why I am feeling this way besides the fact that I have Multiple Sclerosis. I’ve heard of the MS Hug and maybe I am experiencing some version of that?

Last night as I was scrolling through Pinterest and I came across a map of the spine and what each part of it controls. Suddenly, I started putting something together. A few weeks ago my MRI came back with a new lesion in C4. When looking at what the nerves in the C4 area of the spine control I found that sure enough, it’s the diaphragm and muscles around the lower rib cage!

I couldn’t believe it! It made so much sense! Before I even knew it my body was telling me something was wrong in a very specific area. I just hadn’t put two and two together. It made me feel good to see that I wasn’t just imagining this pain and discomfort.

It’s such a hard feeling to describe to people and so often I question myself as to whether or not pain/discomfort is MS related or just the normal aches and pains that people feel every day. Then I remember I am a 25 year old woman with an autoimmune disease and and that it SO important to be in tune with what my body is telling me. It’s just hard to know whether something I am feeling is related to MS or not. But I am learning to trust my body again. To listen to her when she is telling me something is wrong. Because looking back, my gut instinct is usually right when it comes to my body.

I am on week two of my Glatiramer acetate injections (which are known to have virtually no side effects besides injection site irritation) so I am skeptical to think that I am feeling this yucky just from that, but again, who knows! 

It’s not always fun. Sure I would love to go out and do something fun with my husband on this beautiful summer night, but instead I will be probably be on the couch with my heating pad, weighted blanket and a good TV show getting the rest my body is begging me for.

So today, even though I am not feeling great, I am choosing to be grateful for those feelings. It means my body is doing what it is supposed to do and telling me what it needs. All I have to do is listen.

-A

 

 

 

 

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.

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

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

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