My MS Star

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.

We clean up pretty nice! 

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!

My amazing MS fundraiser T-Shirt quilt we won at the silent auction. Talk about wrapping myself up in comfort! Mac likes it too…

 

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.

New Grill, New Attitude

Big developments in our household this weekend as my husband and I welcomed a brand new baby grill to the family! She is roughly 75 lbs (give or take a few), 61″ long and has a beautiful stainless steel completion.

The proud father of a baby grill (the husband) & Sir Mac N Cheese (the dog)

After a grueling day in the sun my husband finally got the new grill all set up today! We have been looking forward to being able to grill out since we bought our house last fall! So of course we couldn’t wait a moment longer and decided to grill up some sausage and shrimp to have with some red beans and rice tonight!

One of our favorite gluten-free, dairy free “quick” recipes is cooking up a protein of our choice (usually shrimp and some sort of smoked sausage or chicken) and mixing it with some seasoned rice and beans. Delicious, filling and low effort! Those are three things that I often require by the time dinner rolls around.

With MS my energy levels definitely suffer. I need a lot more sleep than the average person. I also have sudden and sometimes severe issues if I push myself too hard and stay up too late/don’t get enough sleep. I have learned not to be ashamed of the fact that I am an adult woman who needs a nap every day. It’s just part of my “new normal”. I need to listen to my body and when it is tired, or hot, or dehydrated or hungry I need to make it a priority to give my body what it is asking for. Which is easier said than done.

Think about all of the times you skipped breakfast because you were running late to work, or stayed up until 2am binge watching Netflix when you know you need to be at an appointment at 9am the next day? How about when you look back at your day and realize that you have barely drank 3 glasses of water let alone the 8+ our bodies need to function fully!

It’s so easy to ignore what our bodies are telling us and put them second to our busy lives, jobs and desires! But we have to remember to thank our bodies and treat them nicely! We only have the one, so be kind to it! Eat those veggies, drink the glass of water and take that nap!

I am noticing that my anxiety levels have gone down quite a bit over the past month or so. It could be a new medication that I started (CBD) that is thought to help with PTSD and the anxiety that comes along with it. It could also be that summer is in full swing so I am getting out of the house more and soaking up a lot of vitamin D! It could be that I am making some progress in my efforts to practice mindfulness and meditation. Personally, I think it is all of them combined!

As much as this diagnosis of Multiple Sclerosis rocked mine and my husbands world, it does feel like the ground is starting to stop shaking. We are learning our new normal and discovering each day the little changes and things that we can do to make our hurdles a little smaller and our daily lives a little more joyful!

We spent the weekend getting some things done around the house (such as giving birth…I mean assembling our new grill), running errands, and enjoying some much-needed relaxation time together.

I learned how to the mow the lawn. I am mildly afraid of the lawn mower and the power that it wields, but I am wildly proud of the finely manicured lawn I produced all on my own!

(minor assistance from husband was required)

So as I sit here as my husband grills up some shrimp, my dog patrols the boarders of our lawn and I gaze out admiring my finely mowed grass I am again touched with gratitude. Gratitude for this lovely little life I call my own! I hope you all have something that tonight you can be grateful for as well!

-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.

 

Am I out of the woods yet?

Summer is officially in full swing and I feel like I am on the up and up! I am finally starting to feel better after what felt like a month-long bout of the flu! In actuality, it is likely that I was experiencing some initial side effects from my Glatiramer Acetate injections.

I am now a little over a month into the injections and I am feeling truly blessed that some of my pain and fatigue has eased up! It’s perfect timing because my husband and I are about to get started on a busy summer of weddings, our own wedding planning, and summer road trips!

I am still having a little anxiety about how unpredictable MS is. I worry that I will have a sudden flare up on a day with an important event or during a trip! The “what if’s” that come along with this disease are exhausting.

What I need to do is stop worrying about the future and just enjoy my now! In the words of another one of my favorite wizards;

“My philosophy is that worrying means you suffer twice.” – Newt Scamander, Fantastic Beasts And Where To Find Them

As summer has started to heat up and I get ready for more and more outdoor activities and plans I have really been interested in getting a cooling vest. Heat is one of the most difficult triggers for my MS. Just twenty minutes outside on a 75-80+ degree day and my fatigue spikes exponentially. I get nauseous, dizzy, and weak. It really doesn’t take much exposure to the heat to leave me feeling like a rag doll with the stomach flu.

Usually my symptoms subside very quickly after cooling myself back down to a normal body temperature. So far I do that by seeking out air conditioning, drinking lots of water and using a cool neck wrap (one of those things that you put in the freezer).

The issue I am running into is that sometimes I want to go to a party or concert or wedding and not being rocking an ever so fashionable ice pack around my neck…I mean I’m all for accessorizing…but maybe not with that.

I have read a few blogs and lots of reviews about cooling vests made specifically for people with MS that can go under your clothes. I want one!!! I am looking into insurance coverage for one of the Thermacool under the clothing vests.

It makes me so excited and happy to know that there are tools out there than can make my daily life a little easier!

Overall, I am feeling like the winds have shifted and things are flowing through my life with a bit more positivity and ease! I want to keep that going!

Even though the past month has been difficult, I made it through. It is a sense of accomplishment to know that I have gotten back up after MS has knocked me down AGAIN! I may not be back to 100% or even 75% but I am getting there!

I know this won’t be my last battle with MS, but the small victories feel good! And feeling my body begin to bounce back feels even better!

Keep the positive thoughts going in your lives and positivity will manifest itself from within you!

-A

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