Every. Freaking. Time. 

Every freaking time I decide to put on clean pajamas no more than an hour afterwards, I have the urge to sneeze violently and thus pee myself a little. 

Not so much as to douse my clean pajamas. But just enough to make sure I have the feint smell of dried old lady pee hanging on me until I decide to give in and put on another pair of clean pajamas and then wait for the same thing to happen all over again. 

The laundry pile grows higher with just slightly peed upon pj’s and I try to justify not adding to it by telling myself, who the hell cares if I smell a little like pee? The cats don’t seem to mind. I have to be honest. I barely even notice it. I realize that the battle between being slightly damp and having the energy to tackle that giant pile of laundry will inevitably be won by my desire to just go the hell to bed. 

The thing about cliches is they exist for good reasons. The one about the dotty old lady with a bunch of cats who wanders the world smelling faintly of piss? Yeah. Well, as it turns out, it’s pretty goddamn reliably accurate. 

It sucks to become a cliche. I suppose it happens to all of us one way or the other. 

That said, I better remember to call The Great Scott to let him know that I’m not sure that bladder drug he has me on is working out so well. 

It’s always freaking something. 

Fifty is nifty…and exhausting

A monumental non-MS related event happened to me this weekend.

On Sunday, February 19, I turned 50 years old. I know! Me. Fifty years old. I almost can’t believe it’s true. Oh, but it is true. I have the two-day recovery experience to prove it.

I agonized over what to do to celebrate this monumental occasion. My friend Sandy and I had been talking about it for weeks…What did I want to do? How did I want to celebrate?  She knows me well enough to know that doing nothing would depress the hell out of me but doing something  might have the very same effect what with the reality of what my life is like now. My post-MS life, I mean.

I knew I didn’t have a big night out in me. I knew I didn’t have the energy or the desire to have a big party out somewhere swanky like I’ve done for milestone birthdays past. I wanted to celebrate with people I love but I wanted to do it in my own home. I didn’t want to get all dolled up (hell, by the time I did the hair, makeup and put on real clothes I would be ready for bed!). I didn’t want to worry about looking cute or wearing the right outfit. I just wanted people I care about in my home with me, until I inevitably got tired and kicked them all out.

I needed people who wouldn’t be offended by getting kicked the hell out when I hit the wall.

So I had a pajama party. I had my personal party planner (Sandy, the best friend ever) instruct people to come to my house on Saturday February 18th at 6PM. Yes, at 6PM. This would be an early starting birthday party cause that’s all I have in me. I also told her to tell my guests to be dressed in the kind of clothes they would wear if they were hanging out at home having a wild evening with Netflix and delivery food. I had her tell people to wear their pajamas, in fact, because that’s what I would be wearing. Only one guest actually followed instructions, but I didn’t care. I was happy to be surrounded by friends in comfy clothes celebrating my first half century of life.

People brought amazing food. Sandy decorated with the usual “Look who’s fifty” kind of decorations. I had two glasses of champagne surrounded by people who are really important to me, while I sat in my favorite comfy chair. The guests all knew me (obvi) but some didn’t know each other. My family was there, including my sister (who made the amazing cake), my niece, my brother and some friends from work who are so much more than co-workers. And then a few significant others who have been in my life through thick and thin, and very many birthdays throughout the years…including my one and only Cheryl! Yes. I invited my therapist to my 50th birthday pajama party and she actually came. I don’t think anything could have made me happier.

I had been a little nervous about the whole thing – this seemingly random but important group of people I wanted to be with me while I celebrated in my own low-key way, might not like each other or have anything to talk about. But they all seemed to have fun! I know I did. And when I hit the wall? They actually cleaned up before they left. I mean, what could be better than that?

I planned my low-key celebration of me knowing that anything I did would likely wear me out for days and I’d need to recoup afterwards by sleeping more than a little and doing next to nothing and that is exactly what came to pass. Yesterday I slept in until 2PM. Today, I had big plans to run to Target for a few things I needed after taking a shower. Well I did take that shower. But I didn’t make it to Target. I just don’t have it in me. So I didn’t go. I did manage to get the trash to the curb. In my new life that felt like a major accomplishment and I am giving myself props for doing that.

My trash looks festive! We did it. Me and my friends. We celebrated, even knowing that my ability to do so would be severely limited, we did it anyway.

As luck would have it, our office was closed today for the President’s Day holiday so I have one more day to rest before my life begins anew tomorrow and my second half century begins.

I’m not sure what to expect. I know 50 is supposedly the new 30 and all of that but I am also eyeballs deep in this journey to get my health under some semblance of control and I’m nowhere near the end. I’m still trying to find the treatment that will work for me. I’m still struggling to stay awake. I can walk a little better, for now, but I have no idea how long that will last so I’m a little leery of getting too excited quite yet. I still feel more like I’m 150 and not just 50. That’s just the damn truth.

I guess this is really just like every other milestone birthday I’ve celebrated so far in this crazy thing called life. I have no idea what it will bring and I can only continue to do my best with what comes my way.

And if I have to do it in my pajamas? Well, so be it.

A little love…for me

I’ve written before about how bad I am at optimism.

I know it’s nothing to be proud of. I know our thoughts have a direct impact on our lives and how we experience the world. I hate being so hyper realistic bordering on pessimistic. I really do. I just can’t seem to get myself to the place where I can allow myself the kind of peace that is supposed to come from thinking happy thoughts.

But sometimes? Sometimes one or two positive thoughts sneak in at the strangest possible times. Like today, for example. I am going out on a limb of positivity right now to make the following bold claim: I think the walking drug works for me.

There. I said it.

I have no idea how two little pills every day could have such a magical effect. It makes my brain hurt to think about how a chemical substance could trick my brain into thinking I can walk like a normal human again. But it appears to be doing just that. My legs feel like legs instead of what they usually feel like (something akin to alien limbs controlled by a will entirely their own that don’t like to bend or move properly).

According to drugs.com, Ampyra “is used to improve walking in patients with multiple sclerosis (MS). Dalfampridine produced an increase in walking speed in clinical trials. Exactly how it works is not known. It is thought to increase nerve function.”

“Exactly how it works is unknown.” Huh. That’s not shocking to me at all. What’s shocking to me is that it actually seems to be working at all. The Great Scott told me that some patients experience positive results from taking Ampyra but not all. He said there was about a 30% chance it would work for me. That didn’t sound like the best odds to me. But goddamn, if it doesn’t appear to be working pretty well. I might be the 30%! I almost can’t believe it.

Now I’m also characteristically realistic about this potential good news. I know it might not work for long. It might become less effective over time (TGS warned me of that). Some other horrible outcome could rear it’s ugly head at any time and I’d just have to deal with that. Drugs are complicated.

For example, Modafinil, the other wonder drug that I take daily for my overwhelming fatigue is definitely messing with me and not in a good way.

Modafinil works to keep my brain alert and it really does just that rather magically. But it also seems to make a lot of things work a little too well because I’m all of the sudden anxious, full of anxiety, unable to stop obsessing over strange things, maybe even a tad paranoid. It also messes with my sleep – this cannot stand. I need all the sleep I can get. I find it hard to read. That, too, is completely unacceptable. I’m struggling to finish book #4 of 2017 and this is not helping me reach my ultimate goal!

I wanted the drug to give me energy not make me hyper vigilant and notably crazier than normal. I’ve decided to lay off of it for a few days to see if I notice a change back to my version of “normal.”

The thing about the human body is that it is a vast, complex maze of interconnected systems and parts that nobody really truly understands. They try. They really try. But most “medicine” is an elaborate process of trial and error. Doctors know a lot, I realize that, but even the best ones will tell you that what they don’t know boggles the mind. The fact that I currently take more than one drug daily that uses the phrase “exactly how it works is unknown” to describe its mechanism of operation in the human body is a little bit mind blowing to me. But there you have it.

There are more drug adventures coming for me in the near future.

I have my last Tysabri infusion in March and then I am going DMT-free for two to three months. I will be on ZERO major disease modifying drugs for two to three months. This fills me with fear unlike any other I’ve ever known. I’m having horrifying visions of myself crawling around on the floor or sleeping 15 hours a day for three months. Then today while chatting with Cheryl, my therapist with MS, a different thought popped into my head..another oddly optimistic thought.

Maybe I will feel better without the big bad drug. Maybe it’s making me feel worse while it also appears to be keeping my disease in check. The side effects of the DMTs are hard to separate from the actual symptoms of MS. The Great Scott doesn’t think this current drug is the one for me. He seems much more optimistic about the potential for the “new goo,” as he calls it.

The whole process of modern medicine is about trial and error! You just keep trying and trying until you find the magical combination of things that work for you.

Instead of feeling frustrated by that fact, like I usually do, it sounds oddly hopeful to me tonight. I’m giving myself a little Valentine’s Day love and allowing myself to believe that the right combination is out there for me.

I will find it. It will help me. I mean, look at me! I seem to be walking.

 

Hope in a bottle?

Hope is a funny thing.

If you’re me, you avoid it because you hold a fundamental philosophy about life that states that if one prepares for the worst possible outcome, one won’t ever be disappointed. I believe this may be a common philosophy among young widows. It started for me before that, though. And it continues after. It’s just how I think. I’m not terribly proud of it, but it feels safe. Cozy. Familiar.

Pictured above is the latest hope in a bottle recently delivered to my doorstep by the nice, if somewhat infuriating and idiotic people at the CVS/Caremark Specialty Pharmacy. It arrived in a giant box, about 20 times larger than it should have been to ship such a tiny bottle. I eyed that box suspiciously. I was almost afraid to open it. The bottom line is, hope scares the shit out of me.

This potential miracle in a bottle called Ampyra is supposed to help me walk better for which I am charged a $200 monthly co-pay. Thanks, shitty pharmaceutical companies. Thanks very much.

The thing about not being able to walk very well is that it pretty much affects your entire life. Every outing becomes a highly complex planning experience. Can I park close enough? Will there be something for me to hold on to? Will there be steps? How many? What if when I start walking my legs have other ideas? These are all things that go through my mind before I leave the house for just about any reason at all. The thing is, I don’t mind my funny walk or crawling up steps in the comfort of my own home, but it’s not something I love to experience out there in the public.

I’m not sure if it’s as simple as being vain, but I’m sure that’s part of it. It does look funny, there is no doubt about that, but more and more I really, truly don’t give a shit how I look. I think it’s more about how horrible it feels. There’s this strange experience when your brain is telling your legs to do something, but your legs aren’t down with the plan. Your brain is saying, “Walk! Head up the street! Here we go, one foot in front of the other, easy peasy!” Even toddlers can do it. Eventually.

But your legs all of the sudden don’t feel like they are entirely under your control. Or even a little bit under your control. I wish I had words to describe it better, because it is a singular, maddening, flat out bizarre experience to feel that something connected to your person isn’t under your control.

When people ask that question, you know the one, if you could change anything about yourself – anything at all – what would it be? Without a second’s hesitation my answer is always the same. I would love to be graceful.

Have you ever seen the way a dancer walks? They are very straight, erect and strong looking. Yet they glide across a room as if propelled by an invisible force that only they can conjure that makes them look like they are walking on air. I’ve always wanted to walk like that. Even when I was healthy, I never came even close.

I stumble, I stomp and I stutter step. I clunk and creek and clomp. And that’s when I stay on my feet. I see myself as the antithesis of graceful. I am the definition of non-grace. Then I started to have those “legs-not-legs” feelings on a more regular basis. I was diagnosed with MS. And my hope to ever be a graceful walker was permanently dashed. I mean, there are worse things that could happen! But being able to walk…it’s kind of fundamental. It’s not like having nice skin or getting a reliable erection (if you’re a man). Those things are simple to get prescriptions for. And they are usually cheap. Drugs that help you walk, on the other hand, take over 7 weeks to be approved, too many phone calls to count, mix ups with insurance details, mean emails to nurses and yet more phone calls.

There are two categories of drugs I take to help my MS. The big MS drugs are the Disease Modifying Therapy drugs (or DMTs to us in the know). For me, that is my monthly infusion of Tysabri. We all know how well that’s been working for me so far. Big snore.

Then there are the little MS drugs – those that affect (or try to affect) daily symptoms. I take Modafinil for fatigue. I take Baclofen for night-time muscle cramps. I take Amitryptiline for nerve pain. I take something called Oxybutynin for my stupid spastic bladder that makes me pee a thousand times a day.

And now, I also take Ampyra, the magical walking drug that is intended to help my legs remember their primary function on a more regular basis.

I’m only on Day 2. I’m not ready to sing it’s praises from the rooftops yet because I’m still pretty shaky but I have noticed that my legs aren’t as stiff and weirdly awkward. I seem to be able to walk a tiny bit faster and straighter instead of my usual drunk-like stumble drag gait. It seems to make me a little dizzy which is odd for a drug intended to help you walk better but I’m trying to give it time to pass. Like many side effects, it might be temporary. I’m learning slowly but surely that time is the factor of life I have zero control over. So I’m trying to be more patient. Emphasis on trying.

But today, I felt like I did indeed walk better. I’m not going to be doing graceful pirouettes any time soon. But I never really could! So who knows. Maybe this one is a winner?

Only time will tell.

Musions on Infusion, episode (I forget)

I had an off-schedule infusion today because it was also my day to visit with The Great Scott, in the flesh. You see TGS when he can see you, not when you damn well feel like it, so off-schedule infusion it was!

It’s funny. The infusion room is not a place I am ever very enthusiastic about entering but in some ways it’s also the place where I learn the most about my disease and get the most useful information.

Going on an off day is like going to a party with a bunch of people you don’t know but who have known each other forever. One of the women in the room today has been getting infusions for 14 years. That kind of blew my mind. I can’t even remember which one this is for me, but it might be 12? I can’t be certain.

Another woman wore an anti-Donald Trump t-shirt and kept spewing news and stories from the Internet openly in the room as she read them from her phone. Here’s the thing. I am of like mind, and as you may have noticed if you know me at all, rather passionate about my anti-That Man feelings. But in the infusion room you cannot escape. It was clear there were three of us on the same page and one of us decidedly not on that page. It was more than a little bit awkward.

I learned today from my all-lady infusion group that menopause and MS are not friends. I told them I insisted to my gynecologist to put me back on the pill because I wasn’t prepared to deal with all of that at the same time as all of this. The ladies unanimously agreed that I made the right decision. Most of them are neck deep in the menopause (as I like to call it) and all having exacerbated symptoms as a result. I am not anywhere near ready to deal with that and THIS at the same time. I know I said that already but I felt like it deserved mentioning twice.

My month has been marked by a persistent viral illness and some pretty off the charts stress levels (the stress is caused by life events over which I have zero control and which are frankly not mine to write about openly so I choose not to, but trust me when I say it’s…a lot).

Illness and stress at the same time mean my usual degree of feeling like crap is multiplied by a factor of about a million and basic life tasks become super challenging. I’m dirtier than usual (showering is just not possible when I feel like this) and more tired than usual (I’m not even sure how that is possible, but somehow it is). Life hasn’t been all sunshine and roses this month, thank you very much, and I’m not signing up for menopause on top of that. Period. At least not willingly.

Nurse A was on her own today and hustling her little butt off. I feel badly for her. She tries so hard to remain positive and upbeat but every now and then you get a glimpse of what her life is like working for the hospital and it’s not easy. Then she has to deal with us on top of that. It makes making ads for a living feel kind of like having a lemonade stand.

One of my fellow infusees today was a very challenged walker. She arrived late, like most of them did today complaining about how shitty people drive when it rains in Pittsburgh (which they do! Man it was a hot mess this morning). She inched her way across the room, pushing her rollator in front of her. She dragged one hot pink Nike clad foot across the linoleum, taking teeny tiny steps forward with her good foot. It felt like she was never going to make it across that room and I couldn’t help but wonder why she didn’t take a chair closer to the door. But as I looked down and found myself in the same chair I always sit in (fourth chair in from the door) I realized that habits are hard to break and comfort comes packaged in familiarity. She wanted to be in her chair. I get that.

I had to stop mid-infusion to go have my sitting with The Great Scott.

Like I said, TGS waits for no woman so I got my line capped and headed across the office to the other side where the geniuses live. TGS had two students with him today observing me so we went over my case in intense detail. I learned things I probably learned before but was too muddled to pay attention or know what they meant. We looked at pictures of my brain for a very long time, different slices from different angles, all lit up with bright white spots, my own personal festivus of lesions. I asked TGS how many lesions I have. I don’t know why I wanted to know but when you have a disease marked by ambiguity sometimes any concrete information is welcome even if it’s quite meaningless.

TGS: “There’s a few, (1-2-3-4), there are more here, (7-11-14), and here are more in this view, (17-19-25). I’m going to say you have anywhere from 30 to 45 lesions in your brain. A few more on your cervical spine. They are the likely culprits for your walking difficulties.”

Me: “That sounds like a whole lot.”

TGS: “Well, it’s not a lot and it’s not a little. It’s pretty much average. But these days physical lesions in the MRI are less indicative of how you experience your disease. Research has shown this over time. The better indicator is how you are doing over time.”

Neuro Students: Enthusiastic head nodding, concerned faces, some muttering. Me thinking: “MORE TIME, JESUS CHRIST HELP ME.” But smiling pleasantly at all of them like a daft lunatic.

TGS: “Student #1, why do we prescribe Oxybutynin – Maribeth, I’m putting you on Oxybutynin.

Student #1 with very kind eyes: “Uh, something about smooth muscle, controlling the uh, the bladder control, uh…”

Haughty Student #2: “It works on the striated muscle in the blah-di-blah-di-blah blah blah blah…” I’m sure this was the right answer because TGS clucked approval at him.

But I got the impression that Student #1, with the kind eyes, was his preferred student since he had him do my vision field tests and some basic neuro tomfoolery that happens at every appointment. Student #1 was a super small Asian boy, very thin, jet black hair that stood perfectly on end uniformly all around. His eyes were very dark, definitely black and sparkly. He shook my hand when he walked in the door, his hands were very thin and cold. The other one? He was a beefy white dude with dead looking pale blue eyes and liver-looking lips with a half untucked plaid shirt and he did not shake my hand. I did not like him at all. He was way too superior.

TGS spoke directly to me today instead of into his mini-dictaphone. It was a pleasant change of pace. Here is what we (generally) agreed upon:

  • I’ve not yet experienced a real remission but he thinks it’s going to happen (guess what? it takes time!);
  • He thinks this drug isn’t helping me as much as he’d hoped. He said “Tysabri is what I consider my  best drug but it’s not working out that way for you. I think we want to put you on the new goo.” He means ocrelizumab, the not-yet-FDA-approved drug that everyone is buzzing about in the MS circles (who knew there were MS circles? Well, there are.);
  • The new drug should be approved at the end of March, so my last Tysabri infusion will be in March. Then I need to be flushed for two to three months. That means no DMTs for me for 60-90 days. This scares me a lot. I’m kind of dreading April through June as a result. TGS said we might do some low-dose steroids during that time, depending on “how bad you tank.” He actually SAID that. Sigh;
  • My other new drug (the one TGS quizzed the student about) is to help “calm” my over-active bladder. Super fun. I hope it helps because when I’m not sleeping I’m peeing and it’s getting rather old.
  • The best thing he said during those intense 20 minutes was this, while looking at my brain on the screen in the room, “Most people start to have brain shrinkage when they hit a certain age and they have MS. If I didn’t know anything about you or this case, I’d look at this brain and see a brain of a young healthy person. This is a young looking brain.”

That might be the best compliment anyone has ever given me.

So I shuffled back to the infusion room to finish off my fill-up and share the TGS’s opinions with the ladies, and maybe gloat a little about my awesome young brain.

They unanimously explain to me that the early years (YEARS) are the worst. Each of them had a good three or four years of utter hell before things leveled off and they found some kind of normal. Then for some of them, menopause shoved them back into utter hell and the whole leveling off thing has to happen again.

This scares me a bit. It seems fairly likely that by the time I “level off,” assuming I do, it should be right about time for my hormones to go wackadoodle. I feel like my MS timing is all off. Young looking brain or not.

But TGS remains optimistic on my behalf. He said to me, today, “I believe that once we find the drug that works for you all of this can be reversed. Or at least most of it. I am optimistic.”

He actually made eye contact when he said that part. I felt a mild shiver run down my spotty spine.

I wish he could write me a script for optimism. My insurance would probably reject me for that drug, too.

Check that…

Quick update. So, that whole positive things are looking up I’m getting my new walking drug update that I just posted yesterday?

Someone made a mistake. 

There was an error in the dates designated on the pre-authorization. The specialty pharmacy had to resubmit it. But nobody told me. First I had to talk to the ever- helpful Great Scott’s office (so not helpful). They did give me the telephone number for the specialty pharmacy. 

Ok then. Another phone call. Another 40 minutes of confusion. Another non-answer answer: “There’s nothing you can do. Maybe your neurologist can call and ask them to expedite the new pre-auth.”

Email Nurse Carol. Again. 

I know lots of people have experienced this whole health care system circle jerk. I know many people have life-threatening diseases and they, too, are likely jumping through these ridiculous hoops, being told one thing then another. Losing precious minutes of their potentially short lives waiting on hold. Maybe some don’t even have the energy or ability to chase it all down. I know how lucky I am to have insurance at all!

I know all of these things. Yet none of them make me feel any better. 

I should probably buy some cool furnishings and high-quality sheets with which to furnish the rabbit hole I keep falling down. It appears I’ll be spending a lot of time down here.

Might as well get comfy.