MS Life is Chock Full ‘o Irony

You probably already knew that. MS is a mean, relentless, ironic disease. It’s actually one of my most obvious observations since this whole wacky ride began almost two years ago this month. Well, two years ago in December anyway but close enough.

The things I’ve hated on about myself or thought were critical to my state of mind are the things aggravated most by my multiple sclerosis. So in essence, MS is working to make my worst fears actual realities. Here is but one of many examples…

My looks have always been way too important to me. I took vanity to some dizzying heights in my twenties and thirties. Hell, even into my forties, who am I kidding? It was the thing I always clung to as necessary for my happiness and sense of well being.  As a result, the second I’d been wronged or jilted in some way or when things happened to me in life that presented unpleasant challenges, I would immediately focus all of my energy on hating the way I looked. It’s my standard stress reaction, according to my Precious, Cheryl my therapist. Cheryl is rarely wrong. Because this reaction of mine is pretty much guaranteed. Something stresses me out? Something hurts me? Obviously, it’s because of all of my flaws.

There’s quite a few of those pesky perceived flaws. I’m not pretty enough, I’m not thin enough, I’m not stylish or cool enough, I’m not the kind of girl guys like, I have major hideous physical flaws. I catch glimpses of myself in any reflective surface and see what I believe is a real-life monster. I believe this to be actual truth (though Cheryl often reminds me that I have “broken eyes” that see things that aren’t really there when I’m stressed out…whatever, that’s just crazy).

In circumstances like this when I’m in that reliable downward spiral, when I become the monster-girl, there is one perceived hideous monstrous flaw that bothers me a LOT. It is the area of my upper back that I affectionately refer to as my hump.  It’s part of an entire upper-body focused twisted obsession wherein I’ve convinced myself that my neck is too thick, my posture is terrible and as such I’ve developed a roundness in my upper back akin to good old Quasimodo.

I refer to my hump often. My hump really ruins any dream I’ve ever had of being perceived as graceful. It’s round bumpy humpy-ness utterly ruins my profile. I loathe my hump. It haunts me.

Lately, since my relapse from hell I’ve developed some odd symptoms. I’ve been having a severe, burning pain in my hump which has never been attractive but had yet to have actual feeling associated with it. Now it burns like hellfire that requires me to ice it for any kind of relief. Pain relievers have zero effect on my burning hump.

The next weird thing I’ve been experiencing is an overwhelming thirst. Like, ten days in a desert without water thirst. I’m woken up in the middle of the night nearly every night with a mouth and throat so dry I can barely swallow. I’ve been drinking a lot more than a gallon of water a day. I’ve had to increase my 5 gallon bottled water delivery from 4 per month, to 5 per month and most recently I’m up to six 5 gallon bottles in a MONTH. That’s just insane. I live alone!

And finally, I have noticed a very strange, uh, re-organization of where I carry weight. I’ve never bothered much about my belly because comparatively speaking, it wasn’t anything to really worry about. Now I have a gut. I have a round ass face and a thick neck. My skin is weirdly dry. Try not to be jealous. I know it’s hard.

I was worried I might have developed some kind of serious condition like diabetes or thyroid disease (or worse). Isn’t one disease at a time enough?

My primary care doctor, Dr. Mackey, ordered a bunch of blood work for me so we could figure out what was going on before I saw her today for my annual visit. We talked about my hump pain, my amazing thirst, my roundness in unwanted places…and then we discovered something even more mysterious. My blood results were amazing. No blood sugar issues, lowest A1C in my life, thyroid levels normal. Normal. Normal. Normal.

And yet…searing pain in my hump, debilitating thirst, dry skin and all the rest. Even Dr. Mackey (kind woman that she is) said, “You do seem to have developed a roundness at your upper back that concerns me.”  A roundness?!?! She was medically acknowledging my biggest fear.

MY HUMP IS REAL! It’s not imaginary and it has been getting worse and guess why? Come on, I’m sure you’ve guessed by now…It’s likely to be due to something called Cushing’s Syndrome that is sometimes caused by long term use of high-dose steroids. You know long-term like over the last six months of my life. I’ve been on steroids 5, maybe 6 times? That includes my IV Solumedrol in the hospital that time. I get a small hit of Solumedrol with each of my Ocrevus infusions.

“Will it go away?” I asked her, feeling utterly desperate. “How do we get it to go away? Or make it stop growing?!?!?” I think Dr. Mackey could hear the desperation in my voice. I mean, I’m less than subtle as a general rule.

And then she said, “Well. You can avoid being on high dose steroids as often as you have this year but that’s kind of impossible seeing as your MS has been so incredibly active in the past 6-8 months.”

Um. Ok. That little piece of information is a giant chunk of suck. I can’t avoid steroids! Unless I somehow miraculously stop relapsing every few months, I have a future chock full o’ steroids. Unless the new goo suddenly kicks in and I suddenly start feeling like a real girl again (as if that’s likely to happen).

F.M.L.

MS, it turns out, is trying to ruing everything about me. My physicality, my appearance, my general ability to do basic tasks – and now, NOW, it’s going to mean I’ll likely be in constant adrenal suppression that will make my hump even humpier than it already is. Just when I was trying a new era, one where I try harder to  love-my-broken-body! Goddamit. I want to be nicer to my body, I want to stop resenting it so actively but damn if it isn’t really hard to love your damn hump. Humps are inherently unlovable. Trust me on this.

I’ve read that Cushing’s Syndrome is reversible. According to the Cushing’s Support and Research Foundation, “This process of weaning and wakening of the adrenal axis may take up to a year, and should be monitored by an endocrinologist or physician who has ample clinical experience with the process.”

Another specialist? Another “process.” When I see that word anymore I shudder. I’m not asking for a whole lot of instant gratification, people! Just a teeny, tiny twinge. Why isn’t there some speedy method of hump reduction? Is there ANY JUSTICE IN THE WORLD AT ALL?!?!?

So me and my burning hump will be trying to figure out how to wake up our adrenal axis (whatever the hell that is). Until such time that “process” is completed, prepare to listen to me complain about my damn firey upper back “roundness.”

Dr. Mackey is such an amazingly nice woman, but I cannot deny that I wanted to punch her in the throat when she used that word.

Maybe MS is trying to cure me, finally, of fatal vanity. Maybe MS is trying to help me re-focus on more lofty things like trying to feel good instead of trying to look good. Maybe it’s trying to force me to accept that it’s always been what’s inside that counts (even though I thought that was actually a thing people would say to unattractive girls when they felt sorry for them).

I’ve made a vow, a solemn vow, to try and love my hump (and all of the other objectionable things about this body these days). I don’t know if I’m up to this challenge.

But it’s either that or waking up my adrenal axis and that sounds kind of intimidating. I’m sure it involves a lot of kale.

Post Script:

Here are some good things that happened today to me and my hump…

– I went to the doctor AND to my office today, meaning I walked more steps today than I’ve been able to walk in a while and also remain upright. (1,701 to be exact…I’ve made it clear before that my expectations are really not that high.)

– I ate a giant healthy salad for lunch AND butternut squash soup. I’m so healthy! I also walked to get said salad and soup all by myself. Not very far, but still. It counts. I didn’t need a walking companion.

– I made some serious progress on experiencing life on the outside today, more than I’ve been able to accomplish in a good while. I guess that’s progress.

 

 

13 thoughts on “MS Life is Chock Full ‘o Irony”

  1. Even though I don’t have MS, I spend half my life at Drs offices, new meds, new issues everyday, from Lyme. It seems to mimic MS a lot. Then every test is Normal!!
    I’m a “complicated case”. I understand your step counter- 3 weeks ago, I went to Walt Disney world.it was my bucket list. I survived!! I made it over 16,000 steps, in 1 day- when I got home home I spent 7 days in bed-
    Then Pensacola Beach for Thanksgiving w family and friends, 4 days in bed after. There is always a payoff if I push this body past where it seems to want to be. In bed , I think.!!
    But I’m only 54. I wanted to travel, I want to be thin, can’t I trade this body in??

    But your stories make me want to cry, give me hope, cause u keep pushing through it. And then be brave enough to put it out there!! Please keep blogging. It does help others feel not so alone. Thanks. If u ever get to New Orleans, I can show you my hometown, not just the tourist hot spots.!! Your fan, paula

    P.s. Did u ever ask Your dr about the marinol
    Medicine? It keeps my nausea down so I can eat. It’s totally legal in U.S.. Walgreens fills it. Been a life saver for me. Anyway, take care , as best u can!! Live//Rock this life!!

    1. You’re so sweet. I’m flattered and honored to have made another new chronic illness friend. I knew that Lyme mimics MS! They must have tested me for Lyme a million times. It’s so very similar. I am in freaking awe of your day at Disney. Holy crap. I think I would have been face down in the magic kingdom after only 2000 or so steps. You might be my new hero. 😉 that whole after big activity you get a week straight in bed, we MS’ers call that the MS Tax. And man do I get it. I’m currently in bed after making the effort to be physically in my office more this week and today is my sleep all day to make it up day. Thank goodness for vacation days, right? Who’d have thought I’d be spending those sleeping and not seeing the world? But I’m trying to remember those fateful words I keep hearing:
      It could always be a LOT worse. New Orleans is a place I’ve never been and it’s on my own personal bucket list. Maybe that will actually happen sometime and I can meet you in real life!! That would be amazing. Wishing all good hints for you, Paula!! We are in this together. ❤️

  2. I love your posts. You are so honest and forthcoming about your challenges with MS. I have secondary progressive form for 20 yrs. It’s been interesting. I’ve gone through about every emotion one can go through with this disease. There was the denials, the anger, the why me everything. But that all changed when I started CBD oil 6 wks ago. It changed how I felt physically and how I looked at ME mentally. I suddenly felt like things weren’t so bad after all!! My outlook has done a 180! Pain is under control and I feel peaceful! And I owe it all to Charlottes Web and the Stanley Bros. of Colorado! I was able to go to the health food store and there it was! Keep all of informed on your progress with your challenges! We all care about you and feel your pain! Hang in there. You know MS-this too shall pass!!😙

    1. Holy crap. Cher. I just started with CW cbd oils and I can’t tell if they’re helping or not. I guess I have to give it time? I bought from their site online. My pain has been off the charts lately. I’m hitting all time highs. I hope it works for me too. I’m so excited to hear about your progress! It gives me hope.

      1. So glad to hear you started it!! It has given me hope where there was nothing but my strong will which was starting to weaken. That’s the biggest change for me with the oil-MY sudden sense of well being. Can’t explain it. But it’s almost like my body was getting something it had been missing?? Anyway I’ve been off Aleve for pain and Benadryl for sleep and that’s a plus! You hang in there! Like I always tell myself Rome wasn’t built in a day! Lol

  3. Bethy. This is amazing. I was just formally diagnosed with MS in June if this year, however the signs from MRI and spinal tap were already clear as day. I feel that since this formal diagnosis, I have experienced so many symptoms. However, I also haved high anxiety and unbelievable stress as I was also diagnosed with Sjrogrens syndrome autoimmune in March of this year. I feel so many emotions. I could relate to your story so well, as if I were writing it. I’m so scared. I live on my own as well. It’s overwhelming. I wish to hear more from you. Xo

    1. It’s definitely a lot to deal with alone. At the same time, sometimes I’m grateful that I’m alone. I don’t know how I could be any kind of ‘partner’ to anyone in this condition. It’s going to get better. I keep telling myself that, so I’m going to tell you what I tell myself. It WILL get better. I write to help keep myself from going crazy. It’s always such a wonder to me that my ramblings could help someone else. Thank you for that! -xo

      1. I’m alone too. This disease is new to me…officially june this year, but my old neuro danced around a diagnosis in Jan. I fired her. I’m diagnosed with rrms, which I haven’t a clue how the MS doc arrived at. Since June, symptoms have come out like gangbusters. It could be perhaps that my boyfriend of 6yrs bailed cuz, hey who wants to be with a “sick person “. And apparently, Stress causes these flare monsters to appear. I write this because it seems I awaken with a new “present” every am, so I can relate to this last blog you wrote about everything getting tied into an MS symptom. And my doc of course with the idk phrase. Whats a flare, a relapse a remission, a progression???? I’m convinced that they are just letters that mean the same,
        You have MS and it sucks. I’m in love with your blog.

        1. Your comments did come through!! And I’m so so sorry this is happening to you. I’ve been told it levels off eventually – that we’ll get to a place where everyday isn’t a new nightmare and every second isn’t spent obsessing over how this disease has/will ruin everything good about life. I’ve decided to believe that this will happen to me (and to you too!) because the alternative is too miserable too contemplate. About that boyfriend? Screw that. You are better off. Who the hell does something like that?!? My firm belief is that there are worse things than going through this alone. Like going through this with someone who can’t remotely get it. That would be worse. Thank you for taking the time to comment. The early days are the worst. If you go back and read at the very beginning of this blog, you’ll see that you’re not alone. I have felt and am feeling many of the same things. If one person feels better understood by something I’ve written, that’s pretty freaking amazing. Thanks for taking the time to tell me your story! Sending positive vibes your way…🙂

  4. 🙌🏻Preach! I’m with you chick! I had to get my drivers license renewed (handicapped😱) and I didn’t recognize myself in the picture!! WTH happened to me!!?? Excuse me while I eat my feelings!

    1. It’s seems some of our diseases look an awful lot alike. I guess that’s why so many are so hard to diagnose. Thanks for reading! Means the world to me. 🙂

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