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

Gratitude

Today started out as a very frustrating day. I spent hours on the phone with different pharmacists, nurses and representatives of the MS helpline trying to get my first at home nurse visit set up, where I will learn to give myself my injections of Glatiramer acetate  (the generic form of Copaxone).

There were many questions, warnings, and instructions that each person had to go over with me. By my fourth or fifth phone call of the day I was starting to get annoyed at the information I was hearing over and over again. I know that all of these people wanted to help me, and were just trying to make sure I understood my medications but I just wanted to tell them “Listen, I am completely aware of all of the risks and side effects of this drug. I went over them with my doctor extensively. Also, you don’t have to tell me that it is not a cure. I’m aware of that. What I don’t know is how to give myself a shot, and you can’t teach me over the phone so let’s get to the part where we schedule the training.”

But instead I sat there and listened to each of them repeat the same information. The same words smashing around on the inside of my brain. Scarring. Injection. Needle. Risks. Pain. Insurance. Not a cure. Syringe. Scarring. Injection. Needle. Risks. Pain. Insurance. Not a Cure.

I finally ended my last call of the day two minutes before I walked into my therapist’s office for our weekly appointment. At that point I think I was really needing that appointment. I just needed to vent.

I was feeling frustrated. I couldn’t help but feel more and more like a name on a list of “people with MS” each time another bored sounding employee from the drug company would call me up and talk to me in the same monotone voice about the drug I was about to start, and the risks, and the things to watch out for…

I was completely consumed in my anxiety, frustration, and the loneliness I felt at that moment. Not a single person (with the exception of my neurologists assistant) that I had talked to on the phone had sounded like they cared. They just sounded like they were bored and reading off a script the drug company had given them. It all felt so cold.

I was letting the negative energy I was feeling take control of my mood and thus, how my day was going.

After talking with my therapist I started to realize this and shift back into a more positive energy and we ended up talking about the power of the intention behind our thoughts.

Dr. Masaru Emoto was a Japanese researcher and author who theorized that the human consciousness could have an effect on water crystals. He tested this by taking a drop of water from a constant water source and placing it on a single sheet of paper (also from a consistent source). He would then very intentionally focus all of his consciousness on either a positive or negative statement spoken (and in another test, written) to the water on the paper. He would then place the papers in the freezer and examine them the next day under a microscope. The results are incredible!

The water droplets that had a positive statement spoken to them were formed in intricate and beautiful patterns, just like a snowflake. The droplets that had a negative statement spoken to them were deformed and discolored. He also tested his theory by exposing the droplets to different music, prayers, and names of people in history. There are some youtube videos out there if you google his name where you can see most/all of the actual photos! It’s really amazing how powerful our thoughts and intentions really are. Below are some of the photographs taken by Dr. Masaru Emoto during is experiment.

I really love the beauty in the positivity!

 

It kind of reset my perspective for the day. I decided to stop focusing so much on the negative aspects of my day and instead to concentrate all of my energy on the positive things. My mood has already shifted positively and I am so grateful for the lesson that I learned today and my therapist for helping me discover it.

I know it’s not always easy to find a therapist you really connect with, but it is worth the wait and the search. Don’t give up on your mental health and be kind to yourself!

I challenge you all today to think of five things you are grateful for and send that positivity out into the universe. Lord know’s we could use it 😉

I am grateful for the sun.

I am grateful for a husband who supports me emotionally and financially in these hard times.

I am grateful for my dog, sleeping with his head on my foot.

I am grateful that Sparrow Mom decided to build her nest where I can watch her babies grow.

I am grateful for words and language and our ability to express and connect with people though them.

-A

The brain is quite amazing…

So my brain feels a bit all over the place today so please pardon if this post seems a little scattered.

This morning I had my appointment with my Neurologist. My husband and I knew that we were going in at this point to discuss treatment options, as my recent MRI had given definitive proof of Relapsing Remitting Multiple Sclerosis. No more CIS for this gal! So we did our research.

Anyone who know’s my husband knows that when he starts a project or gets his mind set on something there isn’t a thing in this world that could stop him. So, he went into research overdrive and scoured, I am fairly certain, every nook and cranny of the National Multiple Sclerosis Society’s database for every FDA approved treatment option out there. Then cross referenced it with whether or not they interacted with my current medications, whether they were ruled out because I was exposed to JC Virus (some MS medications can cause brain disease if you have been previously exposed to this virus), and researched the side affects, effectiveness, and risks of each one. He’s amazing. I hope that every person with a chronic illness is as lucky as I am to have the amazing support and love that I do.

We knew we were going into this with a few major concerns. I wanted a drug that was low risk for birth defects as my husband and I start our married lives together we know that someday (a serious someday people) we want to have kids. So, I didn’t want anything that could cause permanent damage to that whole scenario. I also felt pretty strongly that I wanted the benefits to heavily outweigh the risks. I know that these “safer” treatment options are sometimes less effective, but I don’t want anything that is going to make me more sick that I already am. I don’t know if that’s even a realistic thing, or if it makes sense. But Copaxone seemed like the closest fit for me.

I am nervous to start the treatment, but luckily this drug doesn’t have too many side effects. I just have to get used to injecting myself. But that will come with time. I’m not super afraid of the pain, I can handle that (I have a full side tattoo, so I would hope so at least). So that is where my MS journey is at right now.

I’ve been thinking a lot about mindfulness lately and living in the present moment, really connecting to it. I did a great guided meditation last night before bed and something that the instructor spoke about that really stuck with me was how small a part we are in such a HUGE universe of being. It reminded that all of us are connected. We are connected to the people and energy in our homes, neighborhood, city, state or province, country, continent, the world, the universe, the cosmos. The magnitude of it is almost incomprehensible to the human mind. All of these things are existing and working in perfect harmony to keep us alive and our ecosystem thriving.

When I saw my images from my MRI today I couldn’t help but think of that meditation. Even inside our bodies is this crazy complex system that all works in harmony to keep us alive. And even though the neurologist was showing me the parts of my body that were sick, I could also see all the parts that were strong and working and beautifulSeriously, if you’ve ever seen an image of the inside of your own body from pelvis to the top of the head you would think it was beautiful too! It just reminded me that although I may be sick, my body and mind are still strong in many other ways. Even though part of my body get’s confused and attacks itself, a bigger part of it works in a cohesive way together… in harmony, every moment of the day to keep me alive. It made me feel grateful towards my body for the first time in a while.

She’s amazing 😉

P.S. Special shout out, again, to the sparrow mom who is now glaring at me from inside my basket of African Daisy’s. Like..I’m sorry you chose to build your nest in my happy place. We gonna hafta share, girl.

-A