multiple sclerosis
now browsing by category
mondaze
I wish I had something insightful to say today.
I don’t.
I feel so overwhelmingly tired. Every part of my body feels like a one-ton weight. My arms, my legs, my neck. My head is screaming with pain. It is a migraine … something that has become all too frequent of late.
Today felt full … that feeling of eating too much, too fast. It went by in a blur … and I’m fairly sure I accomplished things. But not the things I’d set out to do in the morning. So regardless of how much I accomplished, today feels wasted. How did I run out of time? How did I get to the end with so many things unattended?
Perhaps that’s a mental issue I struggle with. I certainly struggle with perfectionism and OCD. Two things that dictate my day … doing, being, performing perfectly. Checking all the boxes. Doing all the things.
Am I rambling? It doesn’t look like I’ve written much but my brain is running, overflowing. I am frustrated by my disease, by the pain in my body I cannot fix, by my unrelenting fatigue and how it steals my time … my days. Angry at the fog of my brain and the unresponsiveness of my body.
I think about Dr. Markowitz and how he infuriating responds to so many of my concerns … “It could be MS. Or it could be your age.” A pause. “Or something else.”
So, um, life? It could be life. The aches and the pains, the stiffness and the desperate, constant need for more sleep. Of waking unrested. Yes. Life.
I start every Monday with a fresh slate. I begin again. I set goals and strive to achieve them. Hitting road blocks along the way just isn’t my favorite thing. And yet, here I am. On Monday. Exhausted. Fuzzy. Ready to be done.
Reframe it. Find gratitude. It feels nearly impossible. But I sat down and I typed. For the fifth day in a row. And for that, I am grateful.
Ha! I did it.
xox, g
staying focused
Last night hubs took lead dinner preparing duties and made chicken parmesan with cauliflower rice. I may be the only person in the world to feel this way, but I vastly prefer cauliflower rice to regular rice. I am a huge, huge fan. And dinner was delicious.
I, however, failed to take any photos or note any cooking methods. Perhaps this challenge will catch me up earlier than I anticipated. But I do love having a meal at the end of the day that’s warm, and home-cooked and filling. I will make a better effort this evening to document!
This morning I ventured to yoga for the first time in nearly three weeks. My knee injury has been harder for me to deal with than I anticipated. To be fair, the last injury that really sidelined me was five years ago when I accidentally broke my foot on John & my honeymoon. That was a pretty tough one. But memories of the difficulties of being out of commission faded with time. And that was also in my first year of MS, so everything felt much more confusing and challenging. That broken foot took nearly four months to heal. That’s a long time for a hairline fracture.
Back in April when husby encouraged me to get back to yoga and I trepidatiously ventured out to a new studio, it was pretty hard. I think I sweat nearly a gallon and I smelled terrible and I was fairly certain that I was going to pass out or collapse after sixty minutes of heat, chaturangas & downward facing dogs. Today was a different kind of hard. Poses that were never difficult proved nearly impossible. My heightened awareness of both my knees made my movements slow and labored. I saw myself in the mirror and felt clunky and puffy (Can you balloon up after merely three weeks of inactivity? Yes, yes you can). But strangely, after my awkward triangle poses and extended side angles and my near inability to do a simple warrior one, I finished class feeling better than I did before I went in. Yoga just does that, I guess.
Getting injured hasn’t just been physically difficult for me. It has been mental torture. I’ve wallowed in the frustrations of lack of movement, fear of the increased MS-ness of my body, and slowness with which every task has had to be completed. When you favor one leg (either consciously or unconsciously) it throws your whole body out of whack so not only does my left knee hurt in uncomfortable ways, but now so does my right knee and both my hips from my strange, labored, limping walk. I’ve tried to focus on other things ~ writing, cooking, etc etc. But I get distracted by the disorder of the house and the need to clean (something I haven’t tried because of my lack of fluid movement). Yoga helped with all that mental clutter, too. Therapy has been good in so many ways. But not the calming, meditative way that yoga is helpful. The feeling of just being on your mat and everything else fading away. Being present. Being fully in that moment. (Sidenote, that sh*t is hard, sometimes. I feel like my mind never stops – it’s constantly whirring and buzzing with a million thoughts at once).
I want to make a conscious effort to stay positive and stay upbeat as I move through the recovery of my knee. I want to make sure I am not dipping into depression and putting to much emphasis on having MS. I think people who say “I might have MS but MS does not have me” are either the healthiest MS people ever or slightly in denial. I’m okay saying that sometimes, MS does have me. Sometimes it wins the power struggle and I have a really bad run of days. Sometimes, pathetically, I feel super duper sorry for myself. But the trick is to feel those feelings. Get mad, be sad, wallow. And then wake up the next day and move forward. Give MS its space. Respect its tantrum-throwing, infuriating ways. But don’t let it control you all the time.
Going to yoga today – if I’m completely honest – was terrifying. I was so afraid. Of how it would feel. Of what I would or wouldn’t be able to do. Of hurting myself again. Of everything you might think I would be nervous about and so much more. I was scared I wouldn’t be able to drive home after class. I was scared of everything.
But here’s the thing, here’s the trick. I did it anyway. And that’s what makes the difference.
experiments
I’d like to say I’m a consummate reader as though I read Dickens and Faust and thought-provoking interviews and opinion pieces about the state of our world and current affairs. And sometimes, I do. But when I say I’m a consummate reader I mean I read a lot … of everything.
Which includes, but is not limited to, daily email blasts and articles from Mind Body Green.
It was one of these articles that started niggling in my head until I felt I had no choice but to give it the attention it felt it was due.
Which is how I have found myself pledging to cook all our meals for the entire month of October.
Wait, wha?
I have read many articles on various diets, both fad and health-related. I have read about Paleo and Keto and the benefits and drawbacks of vegetarian and vegan lifestyles. I have read about the Wahl’s Protocol and OMS (Overcoming Multiple Sclerosis). I have read articles (upon articles) about the benefits of various food groups or individual foods helping with specific issues (um, inflammation, I’m looking at you).
But …. I’m also a little bit of a cynic. In addition to being wildly stubborn and pouty.
What I loved about the article I read was the idea that sometimes, we lose track of our food and how we are consuming it. Life gets busy, it gets stressful, there aren’t enough hours in the day. And take-out or ready-made food is a really great solution. Which maybe we think we only do once in awhile, but then all of a sudden, I’m getting sushi take-out twice a week. Not only do I need a second mortgage to afford all the sushi, but something is getting lost nutritionally.
The author also wrote about how relaxing it was to get home and prepare meals with her husband. I think that’s what really hooked me. Because when the hubs and I do make dinner and stand together chopping vegetables or prepping fish or meat for the grill, we talk and laugh and interact in a way that is far healthier than sitting beside each other scrolling through our phones as our pre-made dinner cooks in the oven.
And then there was the idea that just cooking fresh food could actually be healthier than any kind of restriction or diet. That the act of cooking meant that I would know exactly what went into it, I could control the portion sizes and I would be responsible for what went into my body. Every day. It wouldn’t be about counting cups of dark leafy vegetables or measuring fat grams. It would be about eating whole, healthy food prepared daily by yours truly.
I was really into this idea. And so, to keep myself accountable, I thought why not revisit the roots of this blog, and share my cooking adventures through the month of October?
If you’d like to read the article that inspired me, you can find it below (along with the rules she outlines!). So … here goes!
https://www.mindbodygreen.com/articles/budget-30-day-home-cooking-challenge
injury time out
On Sunday I was walking down the stairs to take Lucy out and my right foot slipped. It slid four or five steps. My left did not. There were bumps and John came running. I looked up at him with teary eyes and smiled, nodding slightly. “I just slipped,” I said, but the tears weren’t because of that.
He told me not to move, he would take Lucy out. Normally, I would agree and then blatantly ignore him. But I didn’t. After getting both legs next to each other (from their lightening bolt position of the slip) I sat and waited for him to come home. I tried to feel as much as I could in my legs. Which, if I’m honest, isn’t much. Even on a good day.
A million thoughts raced through my head. Breath steady and move your toes and just be quiet for a minute. Those were the good thoughts. The bad ones included It’s your knee, how you could have been so stupid, it will take ten times the amount of time to heal because of MS ….
But I walked upstairs when John got home. We iced it. We went to bed. I felt confident that it would be okay.
On Monday we went to the ER. Because it didn’t feel okay. It felt wretched and scary and I felt wretched and scared (and frustrated and mad and defeated … among other things). The ER told us (after hours and ex-rays and the sound of sneakers on linoleum passing our room over and over) a whole lot of nothing. As we drove home in the rain of Hurricane Florence I spewed vitriol, frustrations dripping in sarcasm and resentment.
Life isn’t always about having MS. But also … it is always about having MS.
This week has been brutal for me. Drowning in my frustrations, my limitations, the pain of my body from inactivity as much as injury. Resentment. Inability. The list goes on, and on. And infuriatingly on.
The truth? I will take longer to heal than someone who doesn’t have an autoimmune disease. I will also be slightly more proactive about it, because I know how debilitating the consequences are for not taking care of myself.
I didn’t fall down the stairs because of MS. So as mad as I’ve been, I can’t blame it on my disease. I slipped on the steps because I didn’t have shoes on, I was looking behind me to get Lucy to come down the stairs and I missteped. Not being able to blame MS pisses me off, to be honest. I like when MS gets to be the bad guy of my life. I wasn’t super pleased at having to accept that this slip could have happened to anyone, MS or not.
It is challenging to be restricted. It’s challenging to have to sit, knowing full well that the only thing that will help things get better is time. It’s challenging to go to sleep each night trying to figure out how to get the best rest possible when it feels impossible. Not being able to run around and do simple household chores means that all I can do is sit here and think about it. Think about life. Think (and worry) about my knee. Think about everything I currently can’t do.
It’s also hard to acknowledge all the challenges, admit your faults and move through it. I am pretty bad at that. Today, as the week winds down into the weekend, the only thing I am trying to do is give myself a break. Let go of the resentment. Accept everything for what it is without needing to define or categorize it. And breathe through it.
That’s really all I can do.
change
My life has changed dramatically since leaving my job last January.
I mean, dramatically.
At first, I felt lost. As though I had no direction and even worse, didn’t even know how to find one. Then I felt resentful. At the circumstances under which I left my job. At my disease. At the world for doing me so dirty. And then came defiance. I will conquer. I will succeed. I will create and live and be unstoppable.
But MS nipped that one pretty quickly in the bud.
Who am I? What do I want to do with my life? What am I currently doing with my life? … I chewed on these questions for a long time. I felt like I wasn’t contributing to our household, that I was the weak link. That this invisible illness of mine was debilitating, but not debilitating *enough*.
But the real question that I kept coming back to was ~ who was I before and why was I that girl? Did I like that girl? Was I proud of her? Did she pursue dreams relentlessly and with passion? Um…. hmmm.
I spent a lot of time not knowing myself and not really having a clear direction (other than stay alive and pay the bills). I spent over twenty years in the hospitality/restaurant industry because I sort of landed there. And I did love it. And I was passionate about it. I was so proud of my last company and all it accomplished while I was there. I look at it now and it’s nearly unrecognizable — it just blew up. Which is fabulous. But I’m not sad that I’m no longer part of it. I wasn’t *that* passionate.
I went to college for musical theatre. And I absolutely adore musical theatre. In fact, I was medium okay at performing, too. But I wasn’t passionate enough to risk it all. To sleep on couches and starve myself and do everything you need to do to make it in the industry. I started waiting tables instead. (See above for where that lead).
So you can imagine that these past eighteen months have been interesting for me. Challenging, frustrating, desperate. Freeing.
I mean, seriously. What do I care about?
Last year was a blur. I quit and then John had surgery. Then he started a new job. And then September happened and September to December are always a blur of football and holidays. This year started well – we hosted our first Rabbie Burns supper and I was hired by Aflac to sell insurance. I got my license. I did my training. I f*cking hated it. I had some major issues with how business was done. I lasted a month. It wasn’t my finest moment in time.
And then the husband told me to go back to yoga.
He’d said it in the past but he was pretty adamant this time. My body was hurting. I was riding my bike every day but I was getting stiffer. The relief that I’d experienced before this for all the joyous physical MS symptoms was fading. I was mentally trapped. And then Dr. Markowitz suggested in April that I needed to figure out my anxiety because my MS wasn’t being triggered by anything physical. Physically, he said, I was doing really well.
Well, isn’t that a b*tch.
Timing is a crazy thing. I received an email blast from a new yoga studio offering a new student special – $21 for 21 days. I called my friend (recently on short term disability for a new MS drug therapy) and we began our 21 days. She didn’t end up staying at the studio after those first few weeks. But I did. I had found something that was missing. I still don’t know if I can put my finger on what it is. But I found it. And it led to some amazing things.
First, it led me to the chiropractor. I did something to my left shoulder (always a painful nuisance … thank you high school swim team). I arrived at my chiro slightly trepidatious but over my first three months fell madly in love with their philosophies, their clean living examples (homemade bug spray! homemade sunscreen! detox diets!)and their long term goal of helping me be the healthiest version of myself I can be.
I discovered essential oils. With a healthy dose of skepticism I ordered a diffuser and all kinds of oils I didn’t even understand. I didn’t even know how to use them for the first few weeks. I just occasionally googled something and then went about my day. And then, all of sudden, things started to make sense.
I also fully committed to using more natural products. I mean, your skin is your largest organ. It makes sense that the things you put on it affect your body as a whole. But I’m a skincare snob. I mean, a big one. Finding new products was not something I undertook lightly.
But Instagram came to my rescue (as it so often does … sort of, haha!). I found Real Simple Soaps out of Hilton Head Island South Carolina and I fell so ridiculously in love with her products that I even got my mother on the natural products train. RSS makes products using goat milk, kefir and probiotics with all natural ingredients. And the stuff works better than anything I’ve ever used. This amazing discovery led me to try Kopari deodorant (all natural coconut). Once the door to vegan, non-GMO, cruelty-free, natural products was open, I not only discovered some amazing things (all Kopari products that I’ve tried are amazing and Thrive Causmetics are THE SH*T) but I felt really, really happy.
I also took Dr. M’s advice and went to therapy. That has been super interesting. Always rewarding, sometimes painful. Usually thought-provoking.
I think that what I’ve learned more clearly than anything I expected to learn was the empowering and positive force of self care. It sounds super (I mean, super duper) pretentious, but it isn’t. I believe in it passionately. I believe in getting sweaty every day and the cleansing power of physically moving your body. I believe in eating healthy, whole foods (but still uber delicious and fun and inventive and non-restrictive). I believe in drinking a ton of water. I mean, a ton. (I drink about 96 ounces a day. I know. It’s a lot). I believe in prioritizing sleep in order to more fully enjoy your awake hours.
I have found that taking care of myself is so much more than getting my Tysabri infusion every twenty-eight days. And in turn, it helps keep my MS under control. It’s insanely powerful.
So I might not have a clear direction yet. But I’m starting to get a good sense of what I believe in, what I’m passionate about and how I want to spend my time. I’m learning to love and accept myself, flaws and all. I’m learning to forgive myself and my disease for bad days.
I’m also attempting to learn how to have curly hair. It’ll be an adventure.
self care?
The past few months have been a whirlwind. Of what, I’m not sure. But it feels like every day the minutes slip away and I’m constantly fighting to be more efficient, to use time wisely, to check all the boxes of ‘things to do’ … and yet, I still manage to feel constantly behind.
A few weeks ago on my Instagram feed (the MS one ~ ilooknormal) I posted about self care. That I hadn’t meant for 2018 to be shaped by it, but somehow, that’s what has happened. For a few weeks I’ve been going to the chiropractor three times a week. It is actually crazy how much that changes your life. And for two months I’ve also been hoofing it to yoga multiple times a week. Plus riding the bike. Plus switching to a Keto diet (um, yeah, I’m not super good at it, but it definitely has its benefits).
Let’s rewind here a minute.
I am not working. So it makes it easier for me to prioritize yoga and chiropractic care and sleep and cooking every day , etc., etc., etc. But after all these weeks of ‘taking care of myself’ I feel a little lost. I mean, I know that the things I am doing are good things. My body does feel better. But, if I had a job, or any other obligation whatsoever, how could I possibly fit all this stuff in?
Sometimes I wonder if it’s the fatigue. If ‘normal’ people just have more hours in the day because their bodies require less sleep. Or, even if they do require as much sleep as I do, they just skip it and manage to be okay. That is not the case for me. Two nights ago I slept for about six and half or seven hours and spent the following day feeling like I was going to die. Eight hours isn’t negotiable for me. It is a requirement. Nine is better. Otherwise all the carefully placed cards in this little house of mine crumble to the ground in an instant.
So.
How do I prioritize this ‘self care’ (most of which is physical) and ALSO manage not to lose my mind?
This is an interesting conundrum.
For the first time in more than a decade, I went to a therapist. This was prompted by my neurologist who pondered during my last appointment if the troubles I was facing in my MS journey were not, as it happened, brought on physically but rather, mentally.
That’s a cold bucket of water to the head if there ever was one. I’d been so focused on the physical side of my disease that I’d completely forgotten that the insidious monster doesn’t discriminate when it comes to triggers. And how (this I asked out loud) could the issue be mental when I’d left my job (y’know, the one with all the stress and anxiety and b.s.) nearly fifteen months earlier?
Mmmmmm.
So, self care is about a little bit more than a chiropractor and yoga and a Keto diet.
To me, right now, it’s about finding an anchor. And figuring out the direction of the wind. I feel physically better since I’ve been doing all of ‘the stuff’ but I also feel adrift and confused and lost. I’m not sure what I’m doing and at 38, retirement doesn’t feel right. So how can I leverage all this stuff and do something I love?
Yeah, I haven’t figured that out yet.
I love writing, but I never seem to find the time. I love cooking, but at the end of the day (when most of the cooking is done in our house) all I want to do is curl up on the couch and be quiet and still. I love traveling and restaurants and using my brain. But what with all the hot yoga and bike riding and chiro appointments I am too tired to even contemplate doing anything else. And if I went back to work full time, I’d give up everything that I have found to help control the disease. So, that’s a little like my own private Sophie’s Choice.
Anyway. My goal is to get back to this blog more regularly. Like Stephen King wrote in his amazing book “On Writing,” you really need to do it every day. Keep the muscles fresh. Keep honing the skill. Maybe, while I’m doing all this, something will clarify and I’ll find my way. Until then, I’m on my self care journey & I’m hoping that it keeps getting the job done.
starting again
When I left my job last January, I didn’t really have any idea what I was going to do. I was quite certain that I would spend February sleeping & watching junk TV (mission accomplished) but after that … it was sort of nebulous.
Last year was a good year. I found myself again, I worked through some things. I decided I wasn’t actually that bad of a person. I’d just maybe spent too much time in toxic situations surrounded by toxic people. (Let’s take a time out for a minute — I don’t think I really understood what a toxic person was until I understood myself, so that’s kinda the catch with toxic people. They come in all shapes and sizes and their toxicity is different depending on who they are interacting with … so it can get complicated.) But the thing is folks — anyone who makes you feel bad, who makes you doubt yourself, who is constantly stating the negative… probably toxic.
Also, being around people whose values, morals, ideas of life matched mine in a lot of ways — much healthier than being told all the time that I was doing it all wrong.
I think I’ve distracted myself with this train of thought. So I’m going to diverge for a minute. Just because my values and morals are different from yours doesn’t make mine right and yours wrong. It doesn’t even classify them. It’s just that I see life one way, and you see it another. And both those ways could be awesome. They could be fulfilling and exciting and full of adventure and learning and fun. It’s just that I prefer to do things my way, and you prefer to do them your way. If either of us start pointing fingers and belittling the other — that’s when it gets bad. I don’t necessarily agree with a lot of things. But it isn’t my place to tell you that YOU can’t do them. And in turn, you shouldn’t criticize my life because I make different choices. I’m not trying to solve the worlds problems right now. But I think this past year has given me a lot of perspective that I had lost.
Right, so my point of this post.
Next week I start a new job. It’s a scary job and it is completely outside my comfort zone. It isn’t like anything I’ve ever done in my entire life. I am terrified. But I am also hoping that this new step allows me to have purpose, earn an income and do something to help other people. Sitting at home for a year really helps you figure out your drive (or lack thereof). It tells you what you need to feel happy and fulfilled. And I’m hoping that going back to work and being part of society again is something I am able to handle without sacrificing everything I’ve worked so hard on this past year.
and now, we are here
This month has been a little crazy for me. Sooooo many MS appointments, needles in my arms, big magnets, life-saving drugs, etc etc.
Today, Facebook reminded me that a year ago, I left my old employer. It blew my mind that it has both been a year, and been.a.year! So much has changed.
To be fair, I probably should have left a lot earlier than I did. I don’t think I had any concept of how wildly unhappy I was until several months of decompression had occurred. Suddenly I wasn’t angry any more, I wasn’t constantly stressed out about things I couldn’t control and I began to see my life a little more clearly.
Multiple sclerosis is pretty serious. I mean, it is but it also isn’t. I think I’m just used to it by now. It’s just how my waking hours are shaped every day. I learn, I make adjustments, i forge on. I don’t think I spent nearly enough time thinking about that and how my life had changed with my diagnosis until I wasn’t working any more. I mean, my job controlled my whole life. It was always priority number one.
And let’s be honest. For years, it was a one in a million job. I had lucked out. But then, suddenly, it wasn’t anymore. And I had to call it. I don’t regret that.
I know this post is a little bit of a ramble through my mind, but everyone’s journey is different. Just like everyone’s MS is different. We all get up in the morning and do our best … and sometimes that’s enough and sometimes it isn’t. When I lie down to sleep every night (well, y’know, most nights when the fatigue hasn’t totally clobbered me) I do an inventory of the day. Did I drink enough water? Did I eat well? Did I exercise? Did the chores get done, the laundry folded, the groceries bought and put away? Did the damn floor get cleaned?!? (It is the bane of my existence). Did I moisturize, brush my teeth (this one is a little hard for me to forget, I’m manic about brushing my teeth!) did I take care of all my MS stuff …. I mean, the list doesn’t end. I’ve usually fallen asleep before I get through it.
MS makes you think about other things as well, when you’re ready to think about them. It makes you think about how you spend your time, how you spend your money, what you prioritize, who your real friends are. It helps you to shape your life in a better way — both mentally and physically. Possibly emotionally as well, but I’m not sure I’ve gotten there.
There are a million ways to live a life. When I left Z, I worried that I’d made the worst decision. That I would look back and regret it. I justified. I got angry. I twisted everything up and over-examined it. But you know what really healed all the pain that it had caused me?
Time.
Time away. Time pursuing other dreams. Time that rolled on and moved away. And suddenly, all the angst, all the introspection, all the heartache and self-doubt and stress and anxiety that those seven years had caused me feels very far away. And I feel free.
never-ending
I’d like to believe that there’s a part of every single person that believes inherently that they are destined to do great things.
I mean, if we don’t all believe that, what are we doing? Are we really content with just being mediocre? Being middle of the road?
I don’t think that’s a thing.
And yet, in the months I’ve been home, I’ve come to see my restrictions so clearly it can be frightening. I’m tired — all the time. Not sometimes, or in the afternoon, or after a long day. All the time. When I’m rested, when I’ve eaten well, when I’ve slept through the night (it does happen!). I’m always tired. Sometimes it’s mild — like, whoops, I went to bed too late, but I can power through this day. Sometimes it’s so all-consuming I’m unsure whether my brain will ever function normally again. When I’m really tired, I forget things. A lot of things. It feels like I’m drunk, or perhaps drugged … like the world is faraway, and I’m seeing it all through water. I play a game every morning, just to test myself. I always try to remember what movie was on when I fell asleep. Sometimes it’s easy. I remember right away. Sometimes I have to ask John. Sometimes I just can’t remember, and I get so frustrated.
Today I wondered if I would ever be able to do anything ever again, the fatigue was so shattering.
And yet, I have to believe that if it’s something I care about, something I feel passionately about, I’ll get it done, I’ll figure it out.
There are a million things I want to do in my life. And I certainly don’t want MS to be the obstacle preventing me. And as I lay in bed after my nap today, I also knew deep down that I don’t want to be mediocre. I don’t want to come and go through this life and not leave a mark.
I think I’m finally ready to figure out my next phase, my next step, the next chapter of my life. If I can stay awake long enough! 🙂
sometimes
Sometimes it’s virtually impossible to be positive.
Despite this blog and my obsession with Instagram ([at]simplygwyn if you are curious) I’m a pretty private person. I don’t relish in other people’s misfortune (or fortune) and I don’t always like to share my own. Have I had tough times? Oh, yes. Have I had amazing triumphs? Yes, it could be said. Do I tend to share those specifics either here or via my social media identity? Usually not.
Today has been a brutal day. For many reasons. MS, obviously. I finally slept through the night but I woke up exhausted and without motivation to do anything. Feeling that way is frustrating, sometimes as though I’m watching myself through a thick pane of glass, all the details blurry and no way to communicate to myself. It’s hard for others to understand — there’s nothing physical that signals my distress, my struggles. I look fine, so I should be fine. I discriminate against myself using that logic all the time.
When you start a day feeling listless and then one thing after another pummels you — it’s very hard to rally. I rode my bike — something that helps sometimes, but doesn’t always. I did one of my longest rides ever — 32.1 miles in 90 minutes. Yay! Go me …. I think.
John got home close to 4pm and brought in the mail. Yup, I’d been such a slug all day, I hadn’t picked up the mail on Lucy and my afternoon walk. It happens folks, that’s the reality of my life. In the mail was a delightful form letter from our new insurance advising me that after review, my MS medication would not be covered and all future costs would be 100% our responsibility.
Whomp. Whoosh. Air sucked out of my lungs, tears stinging my eyes. And this was at the end of an already brutal day.
I’ve been on five drug therapies for MS. I’ve read all kinds of blogs and posts about controlling MS without drugs. I drink green smoothies religiously. I can be enormously fussy about the food I eat. I work hard every day but I cannot NOT be on medication. Before Tysabri I had Lydia (my cane, for those who weren’t reading my blog in 2014). I could barely walk up stairs. My disease progression was aggressive and scary and bad. And now, here I am. Blue Cross Blue Shield of Michigan has decided that they won’t cover the only medication that has ever worked for me. Somehow, a huge insurance company now controls my life. Literally, my life.
Today, it must be said, has not been a good day.
D5 Creation