Mondegreen

There’s a line in the movie Hairspray from 2007 uttered by Miss Maybelle (played by Queen Latifah) when her son Seaweed brings white classmates home from school with him. Seaweed introduces Penny to Miss Maybelle and Penny says, “I’m very pleased and scared to be here”. “Here” being a predominantly black neighborhood. Maybelle’s reply was, “Now, honey, we got more reason to be scared on your street”.

 

Since the first time I saw the movie, this line has been rolling around in my mind.

 

Like y’all, as I have aged and had more life experience, my thoughts and opinions have evolved through the years. Things that I thought to be true simply aren’t true, either because I initially learned them incorrectly or because the world has changed. Conversely, things that I thought weren’t true, are true.

 

I’ll start with something easy and mostly relatable to illustrate my point. You heard a great song as a kid. You learned all the lyrics. You have been singing this song for years, perhaps decades. One day you hear the song performed by a different artist and some words sound different to you. You take to Google, and WHOA! You realize you have been singing different words forever!! 

 

What do you do with that information? Do you argue with Google? Do you rant on the internet about how XYZ changed the lyrics to this great song? Chances are, you are a reasonable person, and you say, maybe sheepishly, wow, I’ve been singing the wrong words all these years. Now that you have this information, do you continue to sing the wrong lyrics? Of course not. You accept that you learned (or heard) the lyrics wrong and move on.

 

Why is it so difficult for us to translate this premise to other issues? Why do we refuse to see another side if it’s different from what we know? Why can’t we listen to new information and make informed choices? Why do we dig in our heels and defend our position when faced with contradictory information? Why can’t we admit that we are misinformed? When someone presents us with facts that are the opposite of what we thought to be true, why do we continue to hold onto archaic, misinformed tenets?

 

Why are we so afraid to be wrong?

 

Some years ago I wrote a Facebook post about white privilege. I wrote how when I first heard the phrase, I was indignant. I wasn’t privileged, how dare someone call me privileged! At some point, I heard ~really heard~ the word white and understood that white privilege is vastly different from having means. From there it was easier to open my eyes, my mind, and my heart to acknowledge that white privilege exists, racism isn’t gone, and yes, I had been wrong for years. In short, my outlook evolved.

 

I am ashamed of how long it took me to realize this. I went to a great school, and I had no idea that my friends of color were dealing with racism. I worked in a store where the clientele were predominantly people of color, and it never occurred to me to treat any customer any differently because of how they looked. We lived in Chicago, and we had friends who were from all corners of the world. It never occurred to me that any one of them was facing bigotry. Because of my limited scope, seen through the eyes of a white person, there was no racism because I wasn’t racist. I didn’t see it happening to my friends. I honestly thought racism was a thing of the past.

 

Then we moved back to Buffalo.

 

I was genuinely surprised by how segregated my city was (and is). Was it like this the entire time I lived here before leaving for Chicago? The answer was yes, yes it was. That, my friends, is white privilege in a nutshell. Having the luxury of being oblivious to the fact that the evils of racism are alive and well is the very foundation of white privilege.

 

I hope that you can be open to learning the hard things. I hope you are willing to have the hard conversations. I hope you are willing to evolve. I hope I continue to listen, learn, and evolve.

 

I hope.

 

 

 

 

 

 

 

 

 

 

 

 

Churning Butter and Other Musings

One time I was filling out a form online and I mistakenly clicked “start over” instead of “continue”. Of course, everything I had just typed in was gone and I was annoyed. Grumbling under my breath about the placement of the buttons while I was redoing the form, I stopped typing. At that moment, I had a shift in my way of thinking. Yes, it’s true that I HATE redoing things for no good reason, it’s also true that it’s only some keystrokes to complete it. It’s not as though I was redoing an entire cuneiform tablet or a mural with hieroglyphics.

Things like that make me question whether I would have survived in ancient times or even fairly recent past times. On those rare occasions when the power goes out, I sort of lose my mind. It’s usually too dark to read, and everything else I think of doing requires electricity.

Inevitably, my mind wanders to other things such as, how did people with MS manage without modern conveniences? We’ve known about MS for just over 150 years, but I would hazard a guess that it’s been around for much longer. How did the pioneer woman with MS churn butter? How did the knight don armor in the summer?

Of course, like free word association, other questions arise. Here it is 2022 and people don’t fully grasp what MS does to a person. How on earth could someone in 1653 explain that they couldn’t lift the pail of water from the well because they were just too weak? How could someone in 1778 explain that he couldn’t wear the wool uniform in the summer because it was way too hot? How could an infantryman explain to his CO in the civil war that he couldn’t march 200 miles in 17 days?

If I had no air conditioning, I would likely be incarcerated for manslaughter, or at the very least assault. When I am overheated, I am this/close to turning into a rabid animal. How did people with MS function before Mr. Carrier invented air conditioning?

How could Miss Eliza convince anyone she couldn’t walk? I imagine she looked fine, except that she couldn’t walk. How did Henry the VIII’s chef explain he forgot about the venison cooking and it burned? I cringe at that scenario. It’s not like there was Door Dash back then.

People with MS are (sometimes) miserable in modern times. I can’t imagine living in the past with MS. I know in those 10 years (in the 20^th and 21^st centuries!) I spent searching for an explanation/diagnosis, I really began to doubt myself. After years of hearing that I was “fine”, I was somewhat unsure if there was anything wrong. I wonder how people in the 14^th or 19^th century dealt with having MS, especially not knowing it was MS? In my case, not knowing what was wrong with me was maddening. I can only imagine that people thought themselves cursed; that there was witchcraft or voodoo at work. One could argue that they were indeed cursed- haven’t we all felt cursed at one time or another?

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.

 

*

 

 

 

 

Hip Hip Hooray

  

So, here's the thing, y'all.  MS is a rare disease. Just having MS makes us special. Special in the "you won the incurable disease lottery that affects only 2 million people GLOBALLY," way, NOT special in the "you hit the actual lottery" way. Unless you did win the actual lottery, If you did, that's amazing and awesome! But since you're reading this blog, I'm going to guess you didn't win the lottery that gives you money.

Yes, we could look at the bright side; MS isn't fatal. That’s pretty much where the bright side ends and the dark side begins. 

The reality of living with MS almost makes one angry when one hears all the euphemisms and unsolicited (however well-intentioned) advice. 

After living with MS for over 17 years, I KNOW I have a fairly mild case. I'm still walking and doing things on my own power. My worst symptom is still the MS fatigue. MS fatigue is not a simple, "I'm tired, I'll take a nap". Oh, wouldn't it be fabulous if sleep took away the fatigue? I've heard (and given) many explanations of the fatigue we experience. No one who doesn't have MS really understands, though.  And that's okay. I think the only way to really understand MS fatigue is to experience it, and I wouldn't wish MS on ANYONE. 

My biggest complaint about having MS is that when you experience something new, everyone (myself included) assumes it is related to the MS. Even my neurologist, who I adore, treated me for a flareand ordered an MRI when I first told her what was going on. All the subsequent members of the medical community who I saw for this operated under the presumption that I was having a flare. 

Not until I had an x-ray months after my initial complaint did they discover the true cause of my problem. 

You see, I had a visit with my primary care provider (who I also love, she's amazing) and she referred me to a chiropractor. I have a wizard for a chiropractor, and I made an appointment with him.  After a few visits, he told me it was a nerve issue. I shared that with both my neurologist and PCP. They concurred and presumably the nerve was inflamed because of the MS. A few visits later and the pain wasn't completely gone. That was highly unusual. Like I said, he’s a wizard. 

I had a follow-up with my neurologist. My MRI showed nothing that wasn't previously noted, no enhancing lesions, nothing that pointed to the nerve problem. I still have a black hole in my cerebellum that they are continuing to watch. 

My neurologist referred me to a physiatrist. No, not a psychiatrist, a physiatrist. What is a physiatrist you ask? Don't feel awkward, I didn't know either.

https://www.aapmr.org/about-physiatry/about-physical-medicine-rehabilitation/what-is-physiatry

I had the visit with the physiatrist. She said I would need PT but not until we got my pain under control.  She prescribed a compounded topical pain reliever. Then, almost as an afterthought, she did an x-ray.

I had my medicine filled and diligently followed the instructions. Waiting (hoping) for the relief it promised. There was none.

Some time later, I got a call from the physiatrist’s office. PT was not in my cards. Small wonder why the topical medicine wasn’t working. I have “prominent osteoarthritic degeneration” in my right hip. So that was why the muscle relaxers weren’t working (except when I took some before bed, I could get a good 5 hours of sleep). That is why the ibuprofen wasn’t working, and that explained why the chiropractor didn’t help.

They called to schedule me for an ultrasound. Apparently, they can use ultrasound to deliver pain medicine and cortisone. It's supposed to something like miraculous as far as the relief it brings. They also told me to schedule a consultation with an orthopedic surgeon.

While at this ultrasound appointment, I asked the doctor how I could have gone from 0 to 100 as far as loss of mobility and pain. The doctor said by the looks of my x-ray, this has been going on for years, at least 5 years. I asked him what I could expect.

“If this treatment provides pain relief, we can prolong the surgery”.

What, what? Surgery?

“Hip replacement. Your decision will be complicated. Replace it now, then probably replace again later. The question would be if we can give you enough relief to prolong the surgery. There has been success with stem cell therapy, but that’s not covered by insurance. It’s about $40,000.”

I liked that he didn’t mince words. In other words, though I hated the message, I liked the delivery. I called a prominent ortho center here. The first appointment they had was March 28. I took it.

Then I got worse. I didn’t think I could get worse without breaking my hip, but boy, was I wrong. So very wrong. I have not gone to a store in months. I barely leave the house. I use a cane for support, especially after my leg gave out twice in the house. My resting pain level is a 4 or 5. Without warning, I will get a jolt that’s about a 25. It truly makes me cry out. I realized there was no conceivable way I would make it to March.

I called another orthopedic center in my area, and I have an appointment for Tuesday morning at 8:00.

Now you know essentially everything I know about my latest adventure.

To loop back to the beginning, not everything is caused by MS. I had somewhat forgotten that. I never dreamed I had degeneration in my hip. Since finding out, I have been replaying the past few years, trying to remember ANY hip pain. I still don’t. I’ve been thinking back, trying to remember any injuries. I don’t. In all, I saw 5 different doctors trying to get relief. I didn’t mention the doctor of Chinese Medicine I saw. Yes, I went for acupuncture. That’s a different post for a different day.

I’ll probably post an update when I have answers.

Until then, keep advocating for yourself. While MS did not cause this particular chapter, I never stopped seeking answers and relief. If it feels different from your normal, have it checked, checked, and rechecked if necessary.