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 🙂

 

 

 

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

The waiting game.

Multiple Sclerosis has already taught me a few things. Things like:

It’s OK to be tired and need to take a rest. No shame in napping!

It’s OK not to be able to do the things I used to do (like have the full-time job that I loved, even though I might have complained about it while I was working, I never realized how much I would miss my company, work and coworkers until I had to leave)

When I need to go to the bathroom I need to go NOW (come on, I have to be able to laugh about this one, right?)

But a big thing I am learning from MS is to be patient and to live in the present rather than worrying about the future. This is something I am still learning, and expect I will continue to learn through the rest of my life. Mindfulness and being present in the now is something I have worked on in the past with meditation but it has never been more relevant or necessary in my life. With this disease there is no way to predict the future. There are no two patients with MS that have the exact same symptoms. It all depends on where the lesions develop in the brain and spinal cord, what stage of the disease you are at, how your body reacts the treatments and medications. There are SO many things we don’t know about this disease (let alone why/how people even get it).

So I am learning…(let’s be honest, mostly struggling) with just letting go of the “what if’s”. You can’t spend your whole life worrying about the “what if’s” especially if you have a disease as unpredictable as MS. This is a really hard thing for me because anxiety LOVES “what if’s”! What if I progress fast? What if I lose my sight? What if I can’t be the mom I want to be in the future? What if? What if? What if? What if? Sometimes I just need to take a step back – look my anxiety straight in her bossy little face and say “Shut.Up!”.

This is my life and I am learning that I get to control it my anxiety DOES NOT.

So, as I sit here on the deck in the probably too cold to be outside but I am doing it anyways because… Minnesota, weather and write this blog I am actively telling my anxiety to be quiet and to just enjoy this moment. I had an MRI yesterday and will have to wait until Monday morning to meet with my Neurologist and get the results and that is all my brain wants to think of. But what is the point in worrying about something that is going to be the same no matter how much thought I put into it this weekend? Me worrying all weekend is not going to magically make the lesions disappear or my symptoms go away! So as my therapist always says “Why suffer twice?” anxiety makes you suffer before you’re actually in the situation you are worrying about.

So I am making a choice today. I will not worry all weekend about the results of my MRI. What will come will come and I will be strong either way!

So for now, I am going to sit outside and listen to the birds, get some much-needed rest after yesterday’s uber stressful day and be grateful for the now.

-A

P.S. Even though I am not a huge fan of Cesar Millan’s dog training techniques I do love this quote from him:

“Dogs live in the moment. They don’t regret the past or worry about the future. If we can learn to appreciate and focus on what’s happening in the here and now, we’ll experience a richness of living that other members of the animal kingdom enjoy.” – Cesar Millan

 

 

The fatigue is real…

Ever since my diagnosis of Multiple Sclerosis this past fall one thing that I have learned is that with MS you don’t just “get tired”. You get fatigued. I’m not talking normal every day fatigue either. I’m talking ” I just moved my entire life’s belongings from one apartment to another…alone” type fatigue. (…yes….I did do that when I lived in Chicago…twice).

This fatigue can hit at any time. For me I pretty much always feel it. I’ve been feeling it for a long time now. It was one of the major red flags that something was off in my body. When you start sleeping 18 hours a day and still wanting a nap during the other six it’s time to get checked out. Some days I feel it less than others. Some days I feel like I could hike a mountain or dance for hours, and other days I feel like I am fighting with my entire body just to get out of bed.

It’s definitely one of the hardest parts of this disease for me. It’s unpredictable (just like everything with MS) and it makes it hard for me to commit to things in advance. I hate the familiar ache in my heart when I text or call a family member or friend to tell them I need to cancel plans…again. It hurts my heart when I can’t attend things I have been looking forward to for weeks. And it freaking sucks to miss out on all of the fun things I could have done if I hadn’t been so fatigued from this disease.

I am lucky to have a supportive husband and a tight knit group of family and friends that are very understanding and supportive of me and my fight with MS. But, I know it hurts them too when they get that last minute text asking to reschedule.

I am learning to come to terms with my “new normal”. I am learning that it is OK to put myself and my health first. I am learning that there is nothing to be ashamed of when I need to nap or rest my body. I am learning that when I push myself too hard one day, I will pay for it in the next few. I am learning that the people who love me understand and do not judge, I am learning to to LISTEN to my body when she tells me that we need a break. I am learning.

P.S. pictured is my dog and nap partner Sir Mac N Cheese