A short PSA

We’ve all seen and shared posts about anxiety, the ones that say oh hey, friends, family, random acquaintances; I have anxiety, and THIS is why I don’t like going places or talking on the phone, or ya know??, being around people. Why do I feel the need to share those articles? It’s a disclaimer of sorts.

Anxiety alone makes me a walking contradiction, on the outside everything appears just peachy, or at least that’s what I want people to think. Inside my brain is going crazy with all these random thoughts that are almost always useless to combat anxiety. Even typing this I laugh at myself because I know these things, I know that the extra thinking only makes my anxiety worse. I also know that I am fighting myself, every day. I literally have notes everywhere saying things like “GET OUT OF YOUR OWN WAY” or “STFU & handle it” or “STOP STOPPING YOURSELF”, and I add more as I need them because I need a constant reminder. I am, my own worst enemy.

Anxiety can bring along depression like they’ve been besties forever or they hardly know each other and are constantly arguing louder than all the other thoughts in my head. I think my anxiety is jealous of depression. Depression leaves, anxiety is always there. Depression gets to just stick around for a little while usually based on circumstance and after the shit, I’ve been through in the last few years, I’d be worried about me if I wasn’t.

Anxiety, depression, and MS are a unique combination. The shaky hands that come with anxiety are only added to the tremors that don’t let you hold a fork to eat proper *I see nothing wrong with using my hands and I’m not sorry. Bring me to a crowd of people and I have anxiety screaming, depression sulking in a corner, and MS wants to run, run away so fast. Any public outing alone requires headphones and I always feel like I’m in someone’s way because I’m slow sometimes because I need to be, but most times I’m lost in the music. I have tripped holding on to a cart in the store before there was nothing on the floor, it’s just how I walk. Confusion – every one of these things makes me confused, I forget where I left things or why I walked into a room. MS brings a different kind of pain than anxiety or depression, MS’s pain in deep, hot, tingly, and constant, really unexplainable, but just cause I’m standing doesn’t mean I’m not in pain. Depression tired and MS tired don’t share the same rating scale, they are not the same. Anxiety thinks MS is a diva, I agree, she is. Anxiety, depression, and MS all are invisible, no one can see them.

People from the dark ages think and have vocalized that these things are all in my head or the heads of others who suffer from the same/similar maladies. I say the dark ages because those were the times, in my opinion, where these things couldn’t happen, they would sour the picture perfect life that has been painted. These things have all existed for a very long time. I can see why it would be difficult for one person to try and explain just one of these ailments, let alone three different ones even if they are a bit complimentary of each other. Sweeping these things under a rug, or creating a secret out of them does not make them go away. Hiding things may make a person feel shameful of who they are because of what they carry.

I will always advocate for MS and Mental Health I will scream from the mountains that I suffer from anxiety, depression, and MS because no one should ever feel like they are alone. Please try not to be that person that has no belief in things I’ve mentioned. If you haven’t gone through something yourself yet, you will, and if you tell yourself you haven’t because of preconceived notions that topics such as these are taboo then shame on you. For real. Shame on you. I hold no personal resentment, but we need to come together and stop tearing people apart for their differences visible or not.

rochelle

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Getting really real

I will be the first to admit that I have been in a funk. It’s the MS, is something I’ve heard on recent TV shows. I’m glad to see that MS is becoming a part of our media culture but MS not just in the background. This gives an inadequate picture of the disease. MS is a real, in your face bitch sometimes, I won’t lie, but neither does she.

It’s the MS that has me in a funk, but it’s not entirely her fault considering biology, psychology, and all the other ology’s that could apply to being depressed or overly anxious, or depressed cause your anxious, or…I’m sure you’re getting the idea. The most important thing a person with MS can do is surround themselves with people who won’t criticize, but question. People who won’t assume, but ask. To do this though, the MS’er needs to disclose MS to those people, and those people will either understand or they will leave, either way, be prepared. Find people that are genuine and good-hearted because the reality of MS is that we need real.

If I am accepting the fact that I have a chronic and debilitating condition – even if that is only the medical definition of it; then I am going to be real enough for people out there that may have just encountered MS, or have had it a long time, or want a different point of view, etc. Just like life, we all have a different narrative, having MS doesn’t change that.

Here’s a what I don’t need

  • Don’t try to understand, I’m sorry (not sorry), you can’t.
  • Don’t get angry if I space out – that is the MS, not your conversating skills – I do that, I’m sorry
  • Don’t assume that because I am standing I am not in pain. Pain is 80% mental & I don’t need that kinda negativity in my brain
  • Don’t think I been drinking because I can’t walk straight even barefoot, on a flat surface. Truth is, my legs sometimes feel like jello or pudding sometimes and other times they feel like the strongest oak tree, I don’t get to pick when that happens
  • Don’t get angry when I do things differently, like throw away those annoying ties that keep the plastic wrapper on the loaf of bread, I HATE THEM! I shouldn’t have to feel like it’s a workout before I make a PB&J
  • Don’t treat me like I’m a fragile bitch – if you already know me you know it’s not true – I won’t break easily, especially since I haven’t yet

The list above is just on a whim, it’s endless and is all things that have happened to me. I know that things like this shouldn’t be big things, but when people react to little things like this in a negative way it only makes a person feel worse, similar to rubbing salt in a wound. Basic human things, just like any other person, how would you want to be treated? I don’t walk on eggshells for people, but I don’t treat them like shit either.

I’m sure I can come up with Do’s and Don’t’s but we seriously can’t tell other people how to act. It all comes back to communicating, in an elementary way. If we don’t effectively communicate then how can we expect anything from anyone in any situation? I stutter and get frustrated, so I either stop and take a deep breath or give up entirely. Depends on the who, and all the other w’s.

I’m not allowing MS to define me. Instead, I am hoping that by embracing the fact that she is a part of me, maybe we’ll learn to coexist. Doubtful, but I am nothing if I am not hopeful. A world without hope is a horrible place, and I don’t want to live in a place like that.

There’s no glamour to being disabled before you’re 40. My funk derives from this revelation too, and it’s difficult for me to wrap my head around, eventually I will. Of course, the news was more bitter than sweet considering this bitch has swooped in and taken over. Almost stopped me dead in my tracks. Almost. She won’t get in my way, not if no one else could.

Good thing I can adapt.

xoxo

Rochelle

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With a little help from my friends

To those who don’t think real friendships exist anymore, or that you can’t make new friends when you move 1000 miles from home, or that you can’t KEEP those friends that you have known since you were eight years old, I call you all liars! I have been blessed with some of the best friends a girl could ask for. Moving so far from home I learned real quick that my short list of ‘friends’ was actually much shorter. That’s OK! That’s exactly perfect for someone, like me, who has zero tolerance for frauds or people who were only my friend because of what I knew. Fuck that. True friends are counted on all of my fingers, without using the same one twice, and there’s room for more. Maybe.

I got a package today from my beautiful, bestest, first Jersey friend. It’s just what I needed to give me that little it’s gonna be OK. We never were the girls who talked on the phone for hours, we used to email back and forth but life gets crazy and email is meh! I’m a shitty friend for not talking on the phone, but who wants to talk on the phone after work time? Not me when I was working and surely not me now. Thank you for understanding and for being here 🙂 I love you!  a8b9714b-845f-48e9-ad07-d7432e4853d3-collage

Since 2017 started I feel like my life has been a fucking shitstorm. One thing after another of shit I didn’t and probably would never ask for. My son has been awesome throughout this, he’ll have his own post soon (whether he likes it or not). My friends tho, put a smile on, give me their best pep talks, and make sure that I know they are here for me, even if they can’t physically be here. We don’t have to talk or text every day, but it’s good to know that your friends are there, especially when shit gets hard. Maybe hard isn’t the right word, it’s more like real. I’ve said before, this disease is merciless. MS has zero fucks to give about what happens in my world, and that is something I am slowly learning to deal with.

I feel like my life is up in the air right now, which normally I could deal with, but now I am finding it a bit more difficult. One day at a time. I keep telling myself this, I’m tired of hearing my own voice most times. My whole point of this post is to exclaim my appreciation and gratitude for my friends. Whether they’re in the same state, or 1300 miles away they’re here for me, just like I’d be there for them.

xoxo

rochelle

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We made it

What a whirlwind of chaos my life has been. Florida met a major hurricane last weekend, brutal storm. Horrible damages for some. We were without power for about five days. I’d say it wasn’t a big deal because during it really wasn’t. It was the after that I couldn’t have anticipated. 

That fire that’s always in the top part of my legs crept its way through my entire body. Some call this an MS hug, but fuck that, just like Irma, I didnt invite this hug into my space. I’m hurting but also fear that if I don’t at least try to keep a normal routine I’ll really be the lazy bitch people think, or (more tragically) gain every damn pound back that I lost. Even if the losing wasn’t by choice, the gaining back isn’t one. 

The upside, brain is still working well. I may not always speak clearly or in English,  cognitive functions are necessary! Before Irma swooped in here I was on a schedule, as soon as my body gets the message or the rest it really needs I’ll get back to it. At least I don’t feel like I’m melting anymore. 

Staying as positive as I can in my cynical way. This disease is shit! MS messes with your body and your brain, changes you with force. My friend asked me before the hurricane if I was ‘ready’ for the hurricane, my reply; my life’s been a hurricane, what’s Irma gonna do, or Jose really!? I was not petrified of the experience but more for the after, not the during. People get crazy in times of crisis, like for real crazy!!! That scared me more. 

Sometimes it’s like MS is finding these new and creative ways to make me fight, or at least duck and weave until later on. Some fight is better than no fight at all. 
xoxo

rochelle 

adopting adapting?

Yesterday I just felt heavy. Today I’m feeling flat and in a world of hot leg pain. Good news though, I should not have to drink any more chalky pretend tang in my future. All of the old meds are gone!!! 

Pain aside. I’m still fighting even if it’s only with the disability people right now, but yep, still fighting. If you’re still young it seems impossible that you could need to be disabled but seriously, it happens. We can’t pick or decide. Doctor kinda did that for me, just a small speed bump but yea. Good times. 

Just like everything else with MS, I have to adapt. 

A little Lemtrada???

Maybe it’s my research skills…er lack thereof but I am not having any success in finding any real decent info on post-lemtrada experiences. I’m not saying they ain’t out there just haven’t found anything dated this year. I’ll keep looking. 

After three rounds of drinking pretend tang, all of the old meds are gone! I’m hopeful this a good thing. I’m not trying to be the bitchy blogger about this disease, I just strive to remain myself through this process and hopefully learn along the way and help someone else. 

I’m just over two months post-lemtrada and this fatigue is kicking my ass more than before. I am really hoping it’s a sign that since the olds meds are gone then maybe the lemtrada can start working. Hopes and dreams…no other way right? Or maybe because Florida has been super hot this summer? I have no idea, just more waiting. 

My brains working, my body doesn’t always cooperate, but when it does I take full advantage, I’m never sorry for it. Doctor said do what I can, so I do. I use a chair when I cook so I don’t have to stand the whole time. And YES, I actually cook full meals. I will exercise using the wii cause it’s really too humid and seriously it’s safer and causes less worry for Bubba when he’s not home. 

I’ve been making an active attempt at avoiding situations that will make me feel like shit, taking cooler showers, not letting the room get too hot or cold, trying to watch where I walk…cept I don’t always. Drinking loads of water, I actually almost never stop with the water. 

There is nothing I can do to prevent anything from happening to me on any given day but I can sure try to deter it, or at least avoid it entirely…like the beach. Especially in August. 

Last week Bubba dropped me off to spend time with the girls, for celebratory purposes and some catching up, which is always over due. Dude told me I looked like I was melting in the chair, looking back that’s exactly how I felt. I was comfortable, surrounded by good people, and enjoying my time with them. So grateful they are so chill to just chill.

It’s hard for people who don’t have a personal connection to this disease to understand it. Even harder when your future is waiting in the hands of some questionable medical person making a decision on whether I am actually disabled or not. Like that wasn’t a hard enough pill for me to swallow at 39, I feel like the questions and papers just keep coming. Having added stressors like that are surely helpful to my recovery, but Oh gosh! Guess what….still standing. 

it took a while to brew….

multiple 

sclerosis

culpable 

ferocious 

how do you fight 

words of fright

culpable = guilty 

least that looks pretty

but ferocious, a furious battle

i’ll place my trophy on the mantle

i’ll fight, i won’t always win

MS will make your head spin 

it’s mean and ugly

and comes through bluntly 

but i won’t deny

sending a reply

i’m bouncing back 

in between the attack
until next time 

rochelle

extra thanks to my incognito cheerleaders!!  you guys are the best. 

a little poem for MS

dear MS i want to say

i hate you 

you’ll forever be my companion

even if you lack compassion 

you don’t care what i got planned

or even if i can stand 

or what my aspirations are

you care about the scar

you left of my lip

you made me trip 

when i’m the one who can’t grip 

the pen to write 

you fuck with my sight 

still wanna know why i’m down? 

i’m just sad & you’re a clown


a lazy sunday with Maddie Moo

Hello world!!!

I’ve been in such a low place for a while being creative has not been on a list of my priorities; lately, writing has taken over. I love blogging online, but to me there is nothing better than having an actual pen and paper with you; having Multiple Sclerosis and a love for beautiful journals is an unexpected match made in heaven.

MS is something that is so hard to describe to anyone; even if someone who has MS shares your symptoms it is not something we have a pissing contest over; it’s not the same but WE (us MSr’s) can relate. 

I never wanted to talk about it; never wanted to read about; I only searched for whatever I was feeling and how MS related to it. Then, as technology grows, we get all these cool gadgets and information is literally in the palm of our hands. This is why I started this blog, to give a bigger picture of MS, and what it is for me that others can hopefully relate to. 

I need to explain my shower experience. Don’t get all pervy . Seriously taking a shower is a sometimes daunting task. I did not time how long I was actually in the shower, but I was as I call it rushingly taking my time; I got to the shampoo, I can’t remember if I washed my face; but that’s the normal routine, I was tired going in; but the steam in the shower was invading my space, or exacerbating my symptoms as the doctors and some fancy speakers may call it. My legs began to shake a bit, so I steadied myself. Rinsed out the shampoo, got the soap, thew in conditioner cause, come on, I can’t NOT!!! 

This whole time, the only thing calming me down is accounting for everything that I felt, each time I knew the water was PERFECT and swore it was too hot, I didn’t touch the damn thing (thanks to MS I can’t even take a blissfully hot shower anymore). I can tell you that for some oddball reason I put the body towel on the toilet and the hair towel on the sink. 

Thank god I did. I don’t want anyone to have to pick me up ever much less out the shower. Actually forced myself to sit down and comb my hair and put whatever product I could reach in my hair; probably a habit I should get more on board with PREparing?

I know exactly why this was happening to me. I knew it was going to happen when I stopped working out this morning; still did it maybe for 37 minutes MORE than I’ve done in a while and maybe not just an ‘arms’ workout. But it felt so good. 

Right now though, I am resting my legs with the help of Maddie, the anvil.  I’ve been sitting here roughly thirty minutes typing away; hoping that this makes sense and really hoping a bit of rest helps me. 

I’ve been mostly cognitively firing on all pistons, which I will take over the leg shake/crazy tremors thing, even if talking is a task (which I love and hate), I’ll see how that goes tonight, when I go see some friends for drinks (Bubba’s driving) and I don’t drink a lot or often. 

I am just over 30 days post-Lemtrada, and even though I wanted to snap up and run, I really am trying to take it easy. I know I pushed it today and I assure you, I will push it again. I won’t go as much over; but I will slowly creep to it and pass it. Someday. 

rochelle

let the medicine do it’s work

yesterday was my last treatment of lemtrada. well until next year.  five days. not a humongous sacrifice to feel better. or try to get some semblance of normalcy. normal is not my setting. 

i spent that time sitting nearly upright in an uncomfortable chair for an average of seven hours a day.  no big deal. i had books, a computer, my ipad, phone, and headphones of course. oh and snacks. plus they had people that came around to check on all their patients keeping us hydrated, uplifted, and in no short supply of gloriously warm blankets. 

ya know when you go to the beach and stick your feet in right at the point where the water hits the sand….and you stand there for just a little while just to feel the power of the ocean? that is how my entire body felt when i woke up this morning. i felt so weighed down. this is nothing new in relation to having MS but it’s usually just my legs. 

this treatment is no joke. my immune system is more suppressed than usual but all for the ideal result; kill the bad cells and build new ones. i’m not some whimpy broad who can’t tolerate pain, but this pain is different and i’m trying to view it in a positive way. rest for me is not easy. i want to do everything i can no matter how i feel but i can’t and i have to let this medicine do work. 

any new medication comes with a hope, will it work? i believe it will. since i’ll probably be spending a good portion of my time in my ass in the coming weeks i’m asking for some recommendations….books? netflix? prime? i do not need another hobby since coloring is my go to activity. i plan on slowly reincorporating yoga into my daily regimen. 

until my next genius discovery…

rochelle