El Tango MRI – The steps are simple! Don’t.Move.

I had my second MRI of 2018 today. I will say I was pretty worried going in to it. My last MRI did not go very well and triggered some major anxiety for me. I tried to prepare myself this time and was prescribed sedatives by my neurologist to help me get through my 2 hour-long trip into the tiny tube.

MRI’s are stress full enough.

The loud noises, I am fairly certain I made contact with an alien race during my machine’s clanking that was surely heard out into the deep universe!

The tiny enclosed tube, I can only imagine too many people have felt like the fleshy roll of dough being forced back into its Pillsbury canister upon entry.

The cage locking your head in like a space suit helmet, and a table that feels like it’s laying on top of a bellowing alligators back.  (If you do not know what an alligator bellow sounds like, treat yo self!) ⇓⇓⇓

 

Now I gotta say I am SO grateful for the headphones/Pandora station they offer during the procedure. Nothing like the relaxation of headphones so faint and full of static that you couldn’t possibly hear the music over the raucous machine surrounding you.

The best part is when the machine pauses for a second and you get drawn out of your sedated stupor by, the suddenly predominantly louder, “If I die young, lay me down in a bed of roses…” (you know…that cheerful diddy from 2010). If I could pick ONE song to never be included in my MRI playlists it would be that one. I’m just getting an MRI for god’s sake let’s slow the roll on the funeral music.

All in all this MRI went MUCH better than my first two. I am chalking it completely up to the sedatives I was given beforehand.

Sedated and waiting to go into the machine!

Seriously, a calm mind is absolutely vital when you are in a machine like that for two hours. If I gotta get that calm mind through the sedatives for now, than so be it.

I hope that anyone else who has a tough procedure/appointment today finds out just how brave they really are today! Sometimes the things that we deal with, with chronic illness and autoimmune diseases, are shitty. But that is just fine because Spoonies are some strong motherf*$‡%ers!

-A

MS🧠Kicks🧠Ass🧠But🧠So🧠Do🧠I

This morning I woke up for the fourth day in a row with limited (VERY limited/borderline no) feeling in my right leg. I’ve also been having increased tingling in my right foot, and some weird hearing issues. And lastly,  muscle spasms and tremors in my right leg. In the past I have had issues with my right leg losing feeling, but it came back after two rounds of steroid infusion therapy.

I know that this could just be a pseudo relapse due to stress (seeing as most of the symptoms are in a leg that has had issues before makes me think this is likely?) but it scares me nonetheless. It still means that something is wrong. It means that inside my brain there are parts that are dying, being eaten away at by my own immune system.

I have reached out to my neurologist and I am waiting to hear back about what he wants to do about this flare of symptoms.

Today has been a rough day. It’s so hard to explain what it feels like to know there is something wrong inside of you.

It’s so hard to trust your own body and listen to the strange sensations we feel with MS when there are people around you suggesting that it is “just your anxiety” or all in your head. I am still learning how to trust my body, something that is SO important with a disease like MS. God, it’s still weird to say sometimes, disease.

I am the one living in this body, I am the one who knows when something doesn’t feel right. I have lived long enough with anxiety to know when it is wreaking havoc in my body..and when it is not. When it is something else. So I need to trust what I know.

It sucks to have to miss out on things and have to stay inside and rest when my heart and mind still want to be out having adventures. It is unsettling to have a mind and body that are on completely different pages sometimes. I am not choosing to be sick. I am still learning how to accept that some things, like having this disease, are out of my control.

If any of you have someone who is struggling, who is sick, or who just are having a rough day today, give them a hug. Or shoot them a text reminding them they are a badass mother****** and that you love them! We all can use a little pick me up some days.

“Without a little lift, the ballerina falls.” – Next To Normal

So this is for you, yes YOU. The anxious ones, the sick ones, the overworked ones, the black sheep, the depressed ones, the frightened ones, the lonely ones. YOU ARE BEAUTIFUL. YOU ARE STRONG. YOU ARE EXACTLY WHERE YOU ARE MEANT TO BE 💕 Keep on that fight, you courageous warriors!!

With a heart full of hope – A

Multiple Sclerosis Meltdown

I had a bit of a meltdown today.

I woke up in a body that did not feel strong.

My eyes open in the morning and my mind is 25 years young.

But my body does not feel like 25.

It feels weak. It feels fatigued. It feels unsteady.

Does everyone ache the way I do? Do they feel it at this age too?

I want to go out and explore the world.

I force myself to walk with my dog. Probably pushed too hard.

And after we both end up sleeping on the couch.

I don’t like feeling like my body is failing me.

I don’t like when the words “It’s not fair.” run across my mind for the millionth time.

It’s scary to know there is something wrong inside, something that no one can see.

Its unsettling to know that my own immune system is the thing hurting me.

I’m anxious for all the tomorrow’s and uncertainty they bring.

I am angry at my frantic mind for pulling me out of the present, out of calm.

Today I feel like 25 trapped in 93.

Today is what my husband and I call a “challenging day”.

It’s not bad, because it’s still my life and that is precious.

So we choose to look at this disease as a challenge.

Something that we can overcome.

I had a bit of a meltdown today.

But having good cry is not something that is wrong.

And although I may feel sick today I know

It’s what is on the inside that makes me MS Strong.

-A

 

TO SLEEP, OR NOT TO SLEEP? That is the freaking question!

Well, I have woken up to another day that I accidentally slept away the majority of. I always feel a mixture of guilt and embarrassment when this happens.

I usually wake up around 5:30am or 6:00am every morning with my dog. We get up, go outside, eat breakfast, and watch a TV show or two. I give myself my Glatiramer Acetate injection and take my meds. It’s a nice relaxing morning routine we are having. The issue is, without fail, by 10am I am so fatigued and exhausted that I can barely keep my eyes open. So I end up taking a nap around that time most days. I try to keep it in the 1-2 hour range so that I don’t sleep too much and disrupt my sleep pattern.

Anyone with insomnia knows how delicate those patterns can be; nap just a little too long, drink one caffeinated drink too many and  BAM! HELLO 3am and wide awake!

I have almost completely cut coffee out of my diet. Originally it was in hopes of combatting my insomnia. But lately I have been thinking about maybe starting to drink one or two cups in the morning just to try to combat that peak in fatigue each day. Does anyone have any tips for fatigue? What have you found to be helpful? I’d love to hear any advice/input!

I didn’t sleep well last night. I had insomnia and laid in bed for about 4 hours before I  worked myself into an anxiety attack, took a Xanax and finally passed out. Lovely, isn’t it. But naturally I still woke up at 7am. By the time 9am rolled around I was falling asleep on the couch…until 3pm…

These sleep problems are tough to figure out. I know that my body does need quite a bit of extra rest due to my Multiple Sclerosis. I also know that severe fatigue is one of my most significant issues relating to MS. It’s hard because part of me says “Don’t let the fatigue control you! Don’t sleep away your life!” and the other part is saying “For the love of god woman, take the freaking nap so we can at least function for the last half of our day!” Usually team nap wins.

One of my worries I’ve developed since I got sick has been that people will think I am lazy. It is so hard to explain this kind of fatigue to those who have never suffered from it. It’s so different from feeling tired or sleepy.

It’s ten-ton bones, muscles made out of silly putty, weights hooked to my eyelids, sick to my stomach, mind consuming, room spinning, body shaking exhaustion.

So on these days when my body takes over I try not to let myself feel too guilty about it. Obviously my body needed the rest, or it would not have slept for that long! I try not to worry that I did something wrong. Even on the days when I am doing nothing I am actually doing something huge. I am fighting a disease. I am surviving a chronic illness.

So yes, I may need to rest more than the average human from time to time. Yes, I am an adult who has regular (and scheduled) naps and yes, even though I am only 25 sometimes I have to miss out on fun stuff because my body physically just can’t do it that day. But that is ok!

I am also a warrior! I am also fighting my own immune system every single day! I am strong, even on my weak days!

-A

Link between childhood trauma and autoimmune diseases?

I have been thinking a lot lately about the link between childhood trauma and stress related disorders (post traumatic stress disorder, obsessive compulsive disorder, etc) and Multiple Sclerosis.

According to numerous studies throughout the years there is significant evidence that persons who experienced childhood trauma or prolonged stress and anxiety as a child were at a remarkably higher risk for autoimmune disease. These studies are ongoing and are still working out exactly how and why this happens in the body.

Those of you who have read my story you will know that I was abused as a teen by an older man who I met through community theater. Luckily, my family fought tooth and nail for years to keep me from completely slipping away into the clutches of this monster, and eventually it paid off. I was able to make the decision to end my “relationship” with him and remove him from my life.

But those years left scars on me emotionally. I was always an anxious child and started treatment for my anxiety and depression at a young age (around 15 or 16). But after the mistreatment and trauma caused by this man my anxiety only got worse.

A few years ago I stared experiencing flashbacks, nightmares, severe levels of anxiety, panic attacks and other unpleasant symptoms. I started seeing a psychiatrist and going to regular therapy. Through this I was diagnosed with PTSD. It was only about three years later that I was diagnosed with Multiple Sclerosis.

It is somewhat amazing to think about what a powerful impact stress and trauma can have on the body, even years later. Not just emotionally, but manifesting itself into physical illnesses, and in some cases, autoimmune diseases.

When I first discovered this information I was MAD. I was mad at the man who abused me for all of those years. He took so many things from me. My childhood, my innocence, my trust, my confidence and independence and so much more. But now, to learn that years later my health is now leaving me too and it could be linked to the trauma he caused me…

But the longer I have sat with this information the more my anger has slowly ebbed away. By no means do I forgive what that man did to me. It is unforgivable and to quote my girl Kesha;

Some things only god can forgive.” – Praying, Kesha

However, I do not harbor as much anger and resentment towards him as I once did. The struggles and the pain that I endured because of him shaped me into the woman who I am today. I learned to be strong and to shape my own opinions, I learned to be true to myself because I am enough, I learned the importance and the constant love of my family, I learned that I will never let anyone control me or push me around ever again.

They were hard lessons and took me years to finally start addressing, but now that I have I have found a peace that can only be described as liberating.

I do not want to live with hate in my life. I do not want to live in the past. I do not want to live resenting someone for their crimes against me. I have a good life. Even with PTSD, Anxiety, and Multiple Sclerosis I would say I have it pretty damn good.

I have a husband who not only loves, cares, and understands me…he is my best friend too. I have a family that is my rock, always there to support me and to lean on. I have a wonderful dog who keeps me on my toes and makes me laugh every day. I have a beautiful home with my own little garden and plants and I get to share it with Sparrow Mom and her family too!

(Brief update on Sparrow Mom. I know ya’ll care A LOT. Since she moved out, her three babes have made the great leap of life and taken wing. I could not be more proud of them. Bravo little birds, bravo. The nest is currently unoccupied, despite my daily real-estate efforts. Not to mention the multiple phone calls and coffee dates I had with a robin that seemed very interested…ANYWAYS I have a new friend in my backyard oasis and his name is Mr. Toad. More on him later.)

So I take this newfound information regarding my past (and how it could still be affecting my body in the present) and I am choosing to look at it not as painful reminder of things that once were, but as a positive sign for the future.

This research means that we are making progress in understanding these very mysterious diseases. And understanding is the first step towards finding a cure or a way to prevent them!

It is also a reminder of how impactful stress can be. We know that stress can trigger a relapse with Multiple Sclerosis. So now, more than ever, it is so very important for me to practice mindfulness, tackle my problems one day at a time, and take time to breathe and just relax!

No matter where you are in your life I encourage you to take a moment today to think of a few things you are grateful for, take a couple of minutes to just let yourself relax and enjoy those things, and take a few calming deep breaths. It’s a good day to let go of a little stress!

-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.

 

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