Being Aware

With MS Awareness month (that would be March to you civilians) almost over, I have been thinking about what I should write. How to make you more “Aware”. Truth is, nothing I write will matter. 

Yay, you know about MS. Yay, you know some of the symptoms. Yay, you might have a vague idea of life with MS. Unless you have it (and to be crystal clear, I don’t wish this on ANYONE, and I mean I wish NO ONE EVER got the MS diagnosis- not even my worst enemy), you won’t fully understand. MS Awareness Month is every month for me. I am painfully aware of MS twelve months of the year. I don’t mean this in a “poor me” way, it’s just factual.

Conversely, while there are similarities with other diseases, I don’t fully understand them on a deeply personal level. I know people with Rheumatoid Arthritis, with Lupus, with Fibromyalgia, with Depression, and with other chronic conditions. I sympathize, I commiserate, maybe we even have a symptom or two in common. But I don’t know precisely how they are feeling. One thing I don’t do- ever – I don’t ever suggest how they manage their disease. I may ask if they heard about a study or a new medicine, but I don’t tell them what they should be doing. EVER.

I don’t grill them about every treatment they have ever tried, I don’t chastise them for stopping a treatment for whatever reason, and I don’t make them feel like they should do more to “cure” their condition. I don’t tell them that my neighbor’s cousin’s friend’s middle school teacher ate nothing but marigold petals and it cured his disease. I don’t make that person feel inferior for not trying the marigold petal diet to “cure” their incurable condition. I know it's difficult enough to live with a condition that's unpredictable and incurable. I don't want to add something else to deal with by badgering someone.

So in a nutshell, I think I figured out this “Awareness” thing. I would respectfully ask that you not offer “helpful advice” that includes suggesting supplements, diets, getting more rest, sleeping less, exercising more, drinking water, choosing to be happy, going outside, or smiling more. I would respectfully ask that you don’t chastise the person for not trying your suggestions. I would respectfully ask that you don’t talk to the person as if it is their fault they have the disease. I would respectfully remind you that if you don’t have that condition, you do not know more about their condition than they do*.

If a person decides that they want to be honest with you when you ask, “how are you”, please know that this person trusts you, appreciates you, and feels safe enough to tell you the truth. PLEASE, please, please be mindful of that when listening to their answer. Please know they are not looking for answers or suggestions, they are unloading a burden. Please let them talk.

 

*** PUTS AWAY SOAPBOX***

*If you are a specialist in that field, there’s a chance you might know more, but believe me, no one does more thorough research than a person diagnosed with an incurable condition.

STENGTH

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I’ve been taking Aubagio going on 4 years and I am one happy camper. As happy as I can be anyway. I have no noticeable side effects, and it’s a pill I take once a day. No $^*(& injections! My MRIs have been mostly stable. There are no new black holes in my cerebellum or elsewhere. Speaking of my cerebellum, I found this post while looking for something else. I found it enlightening, maybe you will as well. All in all, it seems like Aubagio is doing the trick.

That’s about all we can hope for, isn’t it? Our MS drugs won’t cure MS. The best they can do is slow the disease progression. Any nerve damage that’s occurred, well, that’s there forever. Like the tattoo that was supposed to say “STRENGTH” that really says “STENGTH”, or the mistake you made in 7^th grade that you replay in your mind over and over. Not. Going. Anywhere.

At least it’s not fatal, you have that going for you, right?

Now, I’ve never actually had someone say that to me. Thank goodness because I’m unsure how I’d react. While correct, MS isn’t fatal, it is incurable. The best we can hope for at this moment in science is that we won’t get worse. Even the much-lauded stem cell therapy isn’t at the point of repairing nerve damage. 

So here we are faced with this incurable nerve-damaging disease. What’s worse is that we are literally doing this to ourselves, yet we are powerless to stop it*. Our bodies are attacking the myelin sheaths in our brains. So here comes the immune system saying the equivalent of “your money or your life” to the poor vulnerable myelin sheaths. Of course, the myelin has no money, it’s inside our bodies, so what do you think happens? Our immune system starts munching on the myelin**, leaving us short-circuiting wherever the myelin has been damaged.

Lucky me, I have lesions (damaged or scarred myelin) in my brain, my C-spine, and my T-Spine. My MRIs look like snow flurries on a dark winter’s night. Quite appropriate for a snowflake disease, huh? Next time I’m at my neurologist’s office, I’ll ask for a copy of my MRI so I can show you. If we were playing lesion bingo, I would have a good chance of winning. Though, now that I think about it, that’s probably not a game I want to win.

Oops, I deviated off of my planned path. Again. I had a point I was making, what was it? Ah, yes, the incurable part.

Anyone who has had any chronic condition (chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both***) knows the challenge of living a life while your body wants you to quit trying. It’s not the easiest thing in the world to get out of bed in the morning wondering if you can walk. Wondering if you can do any of the things you want to accomplish.

And yet, we persist. We have to persist against all obstacles. We have to keep trying. 

*No amount of exercise will cure MS, following a special diet will NOT cure MS, taking the latest supplements will NOT cure MS. Maybe it lessens the symptoms for some people, but not for everyone. We are all different.

**This is not at all science-y. It’s what the Discovery Channel would call a dramatic re-enactment. It’s mostly accurate, but don’t take my word for it; I have no letters after my name.

***Source https://www.cdc.gov/chronicdisease/about/index.htm

 

 

MS Awareness Month Marches On

The WHOLE %&$# time

As MS Awareness Month is marching on (ha, see what I did there?), I thought I’d talk about my MS journey. Again.

I know I wrote about the road to a diagnosis in this post, but I think it bears repeating. You NEED to advocate for yourself. YOU need to make yourself heard. Looking back, it seems I was relatively passive in my pursuit of solving the mystery that is MS. I thought I was taking charge of my healthcare, but I’m not sure I was insistent enough. I knew something was amiss, yet I didn’t press enough when I kept hearing I was “fine”. Maybe deep down I wanted to hear that there was nothing wrong even though I knew there was something wrong. I can’t say with any certainty one way or another.

I remember arguing with a doctor in the emergency room who insisted I had pneumonia. I had no fever*, no cough, no shortness of breath, no discomfort in my chest save for the MS Hug that (at that point) had no name and a protruding rib. He showed me an x-ray and he was so sure it showed pneumonia, he even pointed out what he called pneumonia. Thanks to the marvel that is the internet, I now know what he showed me was not pneumonia in my lung.

I remember hearing my alarm in the morning, shutting it off and rolling over. I could not get enough sleep; I never felt rested no matter how long I slept. Fatigue was, and still is, my chief complaint. Fatigue is not just being tired. Fatigue is...indefinable to someone who has not experienced true fatigue. It’s a tired that never ever gets better. It’s having had excellent sleep and still not being ready to face the day. Fatigue is walking uphill through a waist-deep river of barely liquid mud while carrying a 50-pound backpack. It’s getting up from a chair while it feels like you’re being pushed down into the chair. Here’s a view of MS fatigue from another perspective. 

Fatigue is a feeling of heaviness that permeates your body. If you’re ever had the flu, you’ve experienced a fraction of what we feel daily. It requires maximum effort to move an arm and walking anywhere seems impossible. Just for fun, the fatigue level is constantly changing. Some days we can feel- dare I say it- normal, and some days it’s I want another cup of coffee but the kitchen is too far away.

So when we say we have MS, and you say, “gosh, I would never know”, you understand why it’s called an invisible illness or a snowflake disease. I explained how I feel about the moniker of snowflake disease here.

We are all different, and individually, we have different experiences daily. Or more often. I think that might be part of the reason MS is difficult to diagnose outside of areas where it is prevalent. There are so many symptoms that are common with other illnesses and the unusual symptoms (I didn’t tell my doctor about feeling wet when my skin was dry, that’s just weird) don’t get mentioned. Unless you’re looking for MS, you don’t look for MS.

 

 *I don’t really run a fever. In the throes of appendicitis, I never had a fever. My mom never really ran a fever, nor did my sister. We’ve since discovered that my daughter rarely runs a fever.

Medium at Large AKA What Does This Meme, Part II

So there I was, sitting on my couch, playing a silly game on my phone when my Facebook app opened. All on its own just popped right open. To a specific post. Facebook opened on its own to a friend’s post about seeing a medium.

A friend had suddenly lost her best friend, and this friend contacted a medium.

I commented that this was a sign that I should get the name of this medium, especially when you consider how I happened upon the post. I actually had been wanting a reading for some time but I was hesitant. We all know there are some shady people around. 

I sat there, stunned, wondering if I had unconsciously opened the app. I tried to make sense of what just happened. Obviously, I had a faulty phone. But why was it that Facebook opened? Why not any of the other hundred or so apps on my phone? And why this post? Like you, I have a bunch of friends, plus the pages I follow, plus the groups I belong to, not to mention the tons of Spam that floods our Facebook feed.

I have no other explanation other than the Universe was guiding me down the path I was supposed to take.

I say that because a little while later, I got a message. I mean an honest-to-goodness message through an app, from a flesh-and-blood person, not an ethereal, inexplicable, open-to-interpretation message.

The message was from a mutual friend who had seen my comment about getting the name of the medium. As it happens, I already had the name of a medium, I just didn’t know it at the time. He hadn’t made it public that he himself, is a medium.

Come with me if you will, on a short journey back in time. I can (fairly) succinctly explain how these events came to be and how they are connected.

In the fall of 2019, I was a chaperone for a school musical field trip to NYC. The person who asked me to be a chaperone? The director of the musical, who turned out to be the medium. On said field trip I met a bunch of other moms. One of the moms I met is the person who lost her best friend and contacted the medium. She didn’t know that the director was a medium either, as the medium she met with was not the director of the musical. Following the convoluted, yet connected story?

So, the conversation with the director/medium went mostly like this:

“Your P sister has been pushing me to contact you. Seeing the Facebook post, I knew this was the right time”.

Me: Briefly sitting agape.

“She was with you the whole time we were in NYC and she was pushing me to talk to you. I wasn’t sure how to broach the topic, and I have really kept it under wraps that I am a medium”.

Me: I definitely knew she was with me at Wicked. I could feel her. Especially during “For Good”. Wicked was the last show my sister and I saw together.

We decided that we would set an appointment for my reading. Then, the Pandemic Lockdown happened. We kept in contact, and I foolishly thought the lockdown/quarantine/whatever you want to call it would be over and the kids would return to school after spring break. BAHAHAHAHAHA. Anyway, he called me and said that my sister was being very insistent and maybe we should do a phone reading.

Any of you who knew my sister knows that my sister was relentless (I mean that in the best possible way) when she wanted something so this call did not surprise me in the slightest. Facetiously, I said that was soooooo unlike my sister. We scheduled the phone reading shortly after.

The reading was amazing. My sister, my mother, a grandmother, and a cousin came through. I had affirmations about many things, and some other insights as well. I’ve also had subsequent readings, and there is always one thing mentioned that I haven’t figured out yet.

He tells me that he’s seeing a lipstick. The person is very excited about this new lipstick. I cannot figure out who this person is. Perhaps it will come to me, or perhaps in the next reading this person will show something other than lipstick to clue me in.

I will be happy to share his information with you if you would like it. Shoot me a message and I will gladly send you his Instagram and Facebook page.

 

 

 

 

I'm Unsure What this Memes

I’ve been thinking about my sister lately. My sister is always on my mind, there’s no question about that, but lately, I’m thinking about her SO much. She was such an important part of my life and I still have the urge to text her and call her. I'm unsure if I'm having these remarkably strong feelings about her because I miss her tremendously, because I’m feeling so lousy, because it’s coming up to spring, because I keep seeing crooked pictures in my house, or all/some of the above. My sister was a unique and incredible soul. You can read a little about her in the birthday post I wrote for her some years back. Incidentally, you have no idea how heartbreaking it is to write about her in the past tense.

What’s that? Why do crooked pictures make me think of my sister? Every so often, for no real reason, we would text each other this meme. I previously mentioned this briefly here.

Any variation of this meme would suffice. One of us would send it and we'd laugh and laugh.

Then one day…

I looked at this wall and noticed this:

This is the back wall of my closet- I opened the closet fully so we could put the TV in the little nook. Absolutely no one goes in there. We have to move the TV out to dust and sweep. I will straighten the photo, and invariably it gets crooked again. For reference, the photo has been there since about 2014-2015. It was always straight because believe me, I would have noticed if it wasn’t. Even if my eye wasn’t attuned to such things, there is a piece of wood on the wall that used to hold up a closet shelf that accentuates straight (or crooked) lines.

 

So take a wild guess when this started happening? You got it, sometime after my sister departed this life.

Y’all know that I don’t believe in coincidence and that I do believe I have visitors. I previously wrote about it, you can read this if you have extra time.

This post was intended to be a prelude to the other part of my story, but if I shared the story in my usual storytelling style, this would be a heckuva long post. So now I have a conundrum; do I stop here and work on the other post, or do I keep going and hope you don’t notice that I’m just using filler to fluff the post? Since I know you are astute, I won’t fluff and fill this piece. I’ll hit “publish” and work on the other story. I'm not positive this is a strong stand-alone piece, but just know that this ties into my next post. Which, incidentally, I intend to write with more regularity than once a year.  

I’d love to hear from you, tell me what (if any) your experiences have been.

 

-LA

 

 

 

 

 

 

 

 

 

 

The Femur is Lava

 

So I’ve been thinking about the time I went to PT and they discovered that one of my legs was shorter than the other. I went to PT because I had unbearable spasms in my back, but now I’m wondering if that wasn’t the start of my current problem with my hip. If you are so inclined, you can read about that little adventure here.

 

The timeline fits. My doctors say from that judging by my imaging they believe this has been going on for 5 or 6 years. I went to the ER and to PT in 2016. It’s just odd to me that in all this time I never had my hip bother me, not even a little bit. I know the doctors say that hips are fine until they are not. That hips can go from zero to 100 seemingly overnight. It’s just that you would think I would have felt even a little ache in my hip if I’ve had degenerative arthritis as long as they think I have.

 

Then again, we (all the medical professionals I saw, plus myself) treated my current hip thing as an MS flare for how many months? Who knows how many twinges and aches I attributed to MS through the years that were possibly something else? One of the joys* of having MS- even after 17+ years being diagnosed with MS- is that I’m still unsure what is a flare, what is a new symptom, and what is totally unrelated to MS. I’m not one to call the doctor with every little thing, but in this case, all the medical professionals in my life initially thought it was nerve inflammation, perhaps or perhaps not related to or caused by MS.

 

Could I have gotten help for my hip sooner? Maybe, if I had pushed for x-rays. The trouble in my case (I don’t know if this is true for all hip problem cases or not, so as usual, I will only explain how it affected me) was that the pain wasn’t in my hip exactly. The pain was all around my hip, but not where I would consider a hip problem to be. All the nerve pain diagnoses really fit the circumstances. Especially because it came out of nowhere, I never expected anything different than an MS flare. Apparently, no one else did either.

 

There was one symptom I had that was insane- the only way I could describe it is that it felt like the bone marrow in my femur was replaced with lava. Nothing, and I mean NOTHING could touch that pain. It was burning, searing, pervasive, mind-numbing, and continuous. In my last post, you might remember that I casually mentioned I went for acupuncture. Well, I mentioned the lava-in-the-femur thing to this doctor of Chinese Medicine. Are you ready for this? I thought he was joking when he said there is something called “Steaming Bone Disorder”. HUH?

 

Well, me being me, what do YOU think I did when I got home? Yep, I contacted my good friend Google and read about Steaming Bone Disorder, which is caused by a Yin deficiency. I went down the rabbit hole but found a Chinese herbal supplement that was supposed to help. My doctor of Chinese medicine had some and I decided to try it. I would say within a week, the femur filled with lava thing was under control.

I am not suggesting you try this, or even that you see a doctor of Chinese Medicine. I’m only saying that it helped my femurs full of lava.

 

What I am saying, and I cannot say this enough, is NEVER stop advocating for yourself. If you know something is amiss, keep looking for a reason. I mentioned the femur-lava thing to each medical professional, and only the doctor of Chinese Medicine addressed it.

 

*