Word Mental Health Day

October 10th is World Mental Health Day. I talk a lot about mental health on my blog. I have been affected by mental illness since I was a teenager. Growing up, my parents were very open about mental health and, having experienced anxiety and depression first hand, were able to recognize when I started exhibiting signs of anxiety and depression when I was around fifteen years old.

I have come to realize that not everyone grows up in an environment where mental health is talked about in a very open and honest way. There are many people out there who have no idea that they are not alone in feelings of sadness, or fear or hopelessness. People who have no idea that there is a whole network of people out there dedicated to helping those with mental health issues and getting them to a place where they can enjoy their lives again. Today is about shedding light on mental health and ending the stigma that seeking help for your mental health issues is something to be ashamed of.

One thing I have noticed that concerns me is the trend of “pill shaming”. The idea that there is something wrong with people if they are taking medication to help manage their mental health. If you had a physical illness and there was a medication available to you that would make you feel better would you stop for one second to wonder “what will people think if I take this medication?”…nope! You would take the meds, and get better! So there is no shame in seeking help from a medical professional if you suspect that you are struggling from anxiety or depression. They are there to help you, and they can help.

Now, I am not saying that there is a magical pill out there that will just cure your anxiety or your depression. There are many tools that I have added to my proverbial tool belt to help me combat my anxiety problems. To name a few; Meditation, Self Care, Writing (my personal writing as well as blogging), Eating Healthy, Counseling, Regular Exercise

One of the techniques that has helped me the most, not just during panic attacks, but also during physical discomfort from MS, illness, etc. is meditation.

I was recently watching an episode of “In Search Of” hosted by Zachary Quinto and they were searching for the answers to how some people are able to exhibit super human strength or feats during periods of meditation.

He was specifically looking at a Shaolin warrior monk who through meditation, is able to complete tasks that would usually leave a human seriously injured. However this monk walks away with not even a scratch to be seen. For example, in this episode the Shaolin warrior monk breaks a wooden staff* over his head. He never loses consciousness, finches, and claims to feel no pain whatsoever!

*** No matter how good you are at meditation I am NOT recommending you do this…unless you are a Shaolin warrior monk…then I guess go ahead.

In search of (haha get it?) an answer as to how this monk is able to endure these superhuman feats Zachary, the monk, and one other person conduct an experiment where they took two MRI scans of their brains. The first scan was a regular scan, but during the second scan the men were asked to put their hand in extremely cold ice water. They were specifically looking for the area of the brain that recognizes pain to light up.

As suspected, when Zachary Quinto put his hand into the ice water his scan showed the pain receptor area of his brain lighting up like a Christmas tree. But when the monk did this same test, while meditating and centering himself into a place a of tranquility, his scan showed extremely limited activity in the pain receptor area of the brain!

Even more interesting, Zachary went into the MRI machine one more time to test just how successful he could be at lowering his pain level through meditation. His scan, while meditating, noted a significant decrease in activity in the pain center of the brain.

Even the doctor who was helping them conduct this tests were baffled at how affective meditation was at physically changing the way our bodies received and reacted to pain!

I have not been feeling great with a stomach bug the past few days and I have found meditation extremely helpful to help ease my discomfort. Sometimes, if your discomfort is too high to even concentrate on a full meditation even just focusing on your breathing can help. “In…two…three…four…out…two…three…for”. That phrase has gotten me through many a tough moment over the past year.

So today if you are struggling with a battle against mental illness, or if you know someone who is, let us all remember that there is always hope, there is always light, and there is an army of people around you (including me!) that are cheering you on and supporting you every step of your journey!

Let’s share some positive vibes today.

-A

 

 

 

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

 

 

 

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

 

 

 

 

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.

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

 

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 🙂

 

 

 

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 beautiful. Seriously, 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

When the ball finally drops does it shatter?

If you have read my Who am I? post you know that last November I was diagnosed with Clinically Isolated Syndrome(CIS). The National MS Society states: “CIS refers to a first attack of neurologic symptoms that lasts at least 24 hours and is caused by inflammation or demyelination (loss of the myelin that covers the nerve cells) in the central nervous system.”

Since that moment my life has changed so much. My husband and I had to make some  decisions to make sure that we were financially and bodily secure in the future, as we had no idea where this disease would take us. We got married with an intimate ceremony in our own home so that I could be covered by his health insurance. We would have gotten married anyways but this really sped things up. (Funny story, when we got married my husband had already ordered the ring a month before and was ACTUALLY planning on proposing that week. Little did he know he’d get the whole ball and chain!) We didn’t know what the future held. We just knew we would stand hand in hand and face it together…no matter what.

It could have been a six months before my next attack, it could have been years, it could have been never. That’s the thing about CIS. It gave me this shred of hope to hold on to that I wasn’t even sure was real or not. My rational brain tried to tell myself that no, most likely it was not real and that it WAS likely that this would not be my first attack. The optimistic, childlike, dreamer in me was still clinging though, clinging to a faint thread of that hope.

Yesterday, I got the results of my second MRI in six months. It wasn’t great. The disease has progressed and I have new lesions in my brain and spinal cord. The MRI showed that one of my previous legions had shrunk (most likely from the two rounds of steroid infusion therapy I had that first couple months) but the rest had stayed unchanged. My neurologist called me to talk about the results so that on Monday at our appointment we can dive right into the treatment options and make some decisions about symptom relief and disease modifying treatment.

I have been clinically diagnosed with Relapsing Remitting Multiple Sclerosis.

At first I took it really well. It’s funny, it was almost a relief that after six months of wondering and hoping and waiting, I finally didn’t have to wait anymore. I knew. That little thread of hope could go away now. And that is ok. I have spent many years feeling sick and not knowing how to describe it to people,  wondering if I was crazy, wondering if what I was feeling was normal, but not knowing how to describe what I felt to people. Now I can put a name to it. A name that I am not ashamed of, but would be lying if I didn’t say I was a little afraid of.

Multiple Sclerosis.

It hasn’t been even twenty-four hours yet but I feel like I have gone through 8,764 emotions. It’s not like hearing this from my doctor was a big shock. I already knew I had CIS from back in November, and honestly expected that the diagnosis would change during the next few years based on the conversations I had with my MS Specialist.

Maybe I wasn’t ready to hear it so soon? Or maybe no matter how prepared you are there is no way to avoid the fear and the sadness that comes with a diagnosis like this. I am afraid of the side affects of the disease modifying treatments that my doctor talked to me about. I am sad for the things I know I am going to miss out on because I am going to be too sick, or too fatigued to attend and will need to put my body first. I am afraid that I won’t be able to be the mother I want to be someday.

And I am mourning. I love the life I have. I am mourning the fact that I am not even twenty-five years old and I definitely  have a disease that I will have for the rest of my life. I didn’t even get 25 years of “normal”.

I know there are plenty of people who will tell me to be grateful it’s not something worse, that I’m not dying, that there are people who are worse off than me. But I feel that I have the right to mourn, to be sad, and to feel bad and scared. At least for a little bit.

But I will get back up. I won’t stay down on the ground where this news yesterday has knocked me on my ass.

I know I am strong. I have fought through scary and tough things before and I have come out the other side a strong woman, with a husband and family I love, a house and dog I wouldn’t trade for the world. My life is by no means “bad”. I love the life I have. Maybe that is why I am sad? Because it’s so unpredictable now, and I’ve never done well with unpredictable.

Not my happiest post yet…but it’s what’s on my mind.

“I don’t need a life that’s normal. That’s way too far away. But something next to normal would be ok. Yeah, something next to normal. That’s the thing I’d like to try. Close enough to normal to get by. You’ll get by. We’ll get by” – Next To Normal, The Broadway Musical

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