Kilimanjaro Update/Teaser

As I’ve had time to really process everything, at least for the most part, I should probably say a few words about the trip before I start posting my pictures, videos and testimonials and definitely before any media comes out now that we’ve been back for a week. 

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Despite best efforts, four out of five of us summited. I did not. On day 5, summit night, I made it about halfway to the summit before I couldn’t breathe at all; not altitude sickness but really couldn’t breathe, probably a combination of severe asthma, altitude and thin oxygen. You know that feeling when you get the wind knocked out of you and you’re gasping for breath? The higher I went to closer to that I got and my pulsox (taken once I was down at camp by another who failed to summit because my guide, although knowing the signs and symptoms could not get his puslox to work with my long nails) was bouncing around between 28 and 36. Normally it should be 100 at around sea level but at that altitude it’s usually around 60 because of the thin air (approximately 50% oxygen at that altitude). How I was still conscious and just passing out at that point is beyond me. So it got the point, me crying (and not breathing) in between waves of consciousness and arguing that I could go on, my guide told me that if I tried to continue I’d could quite possibly die because going on, there was very little if anything they could do should things go further south and that they needed to get me back to camp (and potentially down one more camp) and a lower altitude ASAP. Of all the things I have going on medically (knees, ankles, heels, MS, titanium spine, etc) it would be my lungs to crap out on me. Or as my dad said in his one line response, “you suck at breathing.” STUPID F’N ASTHMA!

But we all made it back down safely in the end, and lavished in beer, Kinyagi with Fanta, a shower and a bed. We all hurt immensely and could barely walk once we finally stopped moving. Pictures and stories and videos to come of course, along with many many more stories.

Don’t forget there’s still time to donate. I may not have made it to the top but I can still make it to the top of that goal. MY STUBBORN ASS ALMOST DIED FOR THIS PEOPLE! Please continue to share far and wide! And I’m thinking about trying again! Let’s go out with a bang (the you need a cigarette afterwards kind)!

It’s a Small World After All. It’s a Small World After All. It’s a Small Small World

I’ve always known it was a small world. I love playing the six degrees of separation game as I’ve met Kevin Bacon I live on an island with eight million people living on top of each other and yet still run into people I know regularly out of the blue in the most random of places. I find out another regular at my local bar in New York City knows all of the same music people as I grew up with in the Philadelphia area because he played in the bands and on their records. I walk through the Chicago airport and someone screams my name and it’s a random Clemson Tiger that I don’t remember but remembers me. It’s a small world and I very much pride myself on my networking skills and my matchmaking skills. If I don’t know someone who meets certain criteria, I know someone who does. And I love matchmaking people who I think should know each other for whatever reason: similar interests, business opportunities, etc.

Yet it gets smaller. When I started to planning this whole Kilimanjaro trip, I knew I wanted to use an in country tour company and not a foreign one for a multitude of reasons. It seemed only natural to ask a former coworker from my prior time in Tanzania for a recommendation. He referred me to a friend of his, Edward, with Pristine Trails. I will write a more glowing recommendation of them in an upcoming post because they were beyond exceptional and I couldn’t be happier with how the hike turned out sans actually getting to summit vs. hypoxia. But I digress.

As it turns out, Edward’s mother also worked for the same organization Peter and I worked together at, Cross Cultural Solutions, but at the Moshi site while we were based in the then new Bagamoyo site. Then it gets even smaller. Kim, Edward’s wife, went to grad school at Columbia in NYC in the Masters version of my very same Certificate program. We overlapped for a semester but did not know each other. Not only were we in the same school and program; they lived together less than 20 blocks from my own house in Manhattan. She is now working on and expanding programs and activities that I worked on more than a decade ago. I had no idea that they were still even active let alone grown so large.

So on the other side of the world, I find the circle is still so small. I tell you this as an anecdote of “wow, what are the odds,” but also as a warning. It’s a small world and how you treat and build your network is incredibly important. Make the impression you want to last over the decades. The most significant part of this particular story is that there is no social media connections or influence involved. Imagine how much larger that circle is when you toss in the social media aspect.

People remember you and at some point in the near future or decades down the line may be the one who is charged with keeping you alive (in this case literally) or who knows what other significant roles. 

Traveling while sick or disabled

In 5 weeks this will be my view...

In 5 weeks this will be my view...

I’ve traveled extensively over the majority of my life but Kilimanjaro will be my first major trip abroad since being diagnosed with Multiple Sclerosis. Wow is it different!

Typically I would book my trip; the plane tickets, the stay, activities, etc. I would get the required immunizations. I’d apply for my visa. And then I’d impatiently wait until the last minute to pack and hop on a plane. That’s exactly how I did Africa the first time.

This time, it is so much more. In addition to planning a trip for five people and trying to corral everyone and raise money and , there is so much prep for all of the “what if” scenarios.

I need to strategically schedule the trip between two infusion treatments, giving me exactly 4 weeks of available time. After that I have to consider the recovery from treatment time and then I have to account for two days travel both ways. Suddenly my month long trip has become 16 days in country with 4 days travel.

I visit all of my doctors for clearance to travel and climb and put my body through hell for a few weeks and then need letters just to get my immunizations. People with MS aren’t recommended to get live vaccines so we have to weigh the pros and cons to my long term well being and if they choose that I should medically not have certain vaccines, I need letters for that too or else I may not get in country or allowed back into the U.S. (we’re already pressing our luck being in Africa and traveling through the Middle East…womp womp).

I need to make sure I have a double supply of all of my other medications just in case. With MS, I need to have steroids in case I start having symptoms. Then I need insulin for the chance that I need to take the steroids because steroids screw up my blood sugar. I need additional notes in order to then carry all of these drugs onto an airplane across multiple continents and countries.

As with any grossly physical endeavor, I have to make sure that I have everything to constantly monitor my body temperature. I don’t regulate my own temperature too well anymore so I need to keep tabs on it and especially not overheat.

Then you have to have the “what if” scenario plan. What if I have a seizure? Then I’m probably fine, just power through. But what if I have a relapse? Everyone on my trip has to know the protocol. I have to have doctors instructions and phone numbers. I have to have what hospital to have them send me too just in case I were to need it (that should also probably be conveyed to the embassy but I’m going to gamble and just have the plan).

Now I need a Xanax because just thinking about all of this is stressing me out which is never good as stress is one of the three major relapse triggers. I don’t even think I’ve considered half of what else I need. I thought writing this all out would help calm my nerves not fry them more! EEEEEEK!

Is this what it's like traveling with children?

Take one thing off my mind and head over to the Donate Now button at the top of the page and help us raise some money!

Let's Make a Deal

Healthcare (and actually life in general) is not a finite, my way or the highway, practice. There can be quite a bit of flexibility, within reason, in care although you should always use your doctor as a point of contact in any modifications and obviously take your medications as prescribed. That’s my disclaimer. Now on to the good stuff.

When it comes to most things medical, I am the queen of playing Let’s Make a Deal.

Depending on the doctor and the patient, some are more than willing to play. I’m not sure if that makes me the worst patient ever or only borderline worst patient ever since I am 100% pharmaceutically compliant; I just opt out of most other instructions.

For example, I played college lacrosse after having my spine fused with Herrington rods for scoliosis despite being told not to play contact sports ever again.

I quit occupational therapy post last relapse after two sessions. I was MISERABLE and could do better on my own and I could make it productive. So I went back to crafting and creating. I started loom knitting on wide boards and worked my fine motor skills back to crocheting and beading and sewing and silk flowers and more; so much so that I opened the Hazina Safari store to unload much of what I was mass producing at that point.

I did spend just over a year in physical therapy but that was mostly for the massages and another case of Let’s Make a Deal. If I did my exercises and everything he needed me to do regularly at home then he would stretch me and fix my neck and back for me during my appointments instead of making me work. He’d ask if I did me clamshells and core work and I’d tell him the truth, “I went to barre so yes.” He also bribed me with foreign chocolate.

More recently, I’m playing a game of Let’s Make a Deal with myself. As I train and over train to climb Kilimanjaro in January, I’m walking as much as I can, everywhere I can. That’s not too hard to do in NYC but it does start to get monotonous after awhile. The main logic is that all of these fitness classes and gym sessions are great and all but I’m going to be on a mountain for SEVEN days straight, not an hour and a half in a hot studio or gym. I need to make sure I have the stamina. And I love walking to and from places vs marinating in the summer subway tunnels but what do you do when you have nowhere to go? You just make yourself walk. You turn on your music, call your parents, take a business call and walk. I was walking myself insane.

So again, I have gone back to my roots and started volunteering with animals again. I started with a few small shelters and hospitals right by my house but soon realized that the ASPCA was next door to one of my doctors’ offices and I was sold. I went through my hours of training and a few hands on tests and now I socialize with dogs and cats, I walk dogs and I CARRY PUPPIES! Yes, you read that right, I CARRY PUPPIES. How better to train for hiking with a day pack than hiking around NYC while carrying puppies, I mean besides actually hiking with a day pack of course but that is not the game.

So what deal are you going to make with yourself today?

REMISSION!

YEAR NUMBER THREE OF REMISSION IN THE BOOKS!

After a stressful few weeks of tests (mostly between tests), I can happily say that I am still in remission for year number three. For anyone who saw me remission week or even MRI day, you know just how much it weighs not knowing. You think of every minor feeling, bad day, and twitch, every everything that could be slightly not right that might have been a new lesion versus just a random feeling. This time of year I get so paranoid that every time I have a headache, I swear it’s the feeling of my brain slowly deteriorating and holes enlarging. There’s always that chance that the medications stopped working or it just wasn’t able to stop this relapse. There’s also the fear that just because I don’t have a new symptom does not mean I don’t have any progression. There are so many parts of the brain that we don’t know what they do or may not have any function at all. A new hole there is still a new hole.

Remission for autoimmune diseases is very much different than remission from other diseases like cancer although I’m sure the process is just as stressful. Mainly, we’re not cured. It simply means that we have had no progression and no new symptoms; our disease in dormant or stable. We still have to take our medications. We still have to take care of our existing symptoms. Our lasting symptoms haven’t gone away. We just aren’t getting any worse. It is a milestone, yes, but it is hard to explain in a way that everyone can understand. It has been so ingrained in our heads that remission equals cured and chemotherapy equals cancer that anything that strays from that is deemed questionable and potentially false. It's on the same level as the "but you don't look sick" scenario.

But those are all conversations for another time. This is a celebratory post. ON TO CLIMB A MOUNTAIN!

 

Good Night My Sweet Froggy Prince

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I don’t quite remember how Froggy originally came to us. I’m not sure it really matters. Like people, history doesn’t define them. Everyone reacts differently to similar situations. When he came in, he was a no name white fluff ball. One of our vets named him Froggy because he had a kneecap issue so his back legs would kind of cross and flop, much like a frog. He was happy

This story has been a labor of love and taken far too long to write because every time I do, I start crying. I write this not to toot my own horn or bring attention to myself but to solidify the legacy of my orphan baby who should not be forgotten and will forever have a piece of my heart for he was wise beyond his five years and stronger than most people I know let alone fur babies.

If there is one thing I know for sure it is that we as humans in no way deserve the animals and pets in our lives. I’ve always known this within the context of the animals I’ve lived with and those I’ve generally been around but it has become abundantly clearer working around the shelter in New York City. In about 15 years of volunteering and working with animals up and down the east coast, these guys are something special; the way they adapt to the concrete jungle and the way they survive as well as the unique and sometimes appalling ways they end up with us.

These last few weeks I have been utterly impressed, encouraged, inspired and simply in awe of that survivor spirit found in so few people but all too many dogs and pets. Froggy, or as I call him My Sweet Froggy Prince, is a shining example.

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and friendly and didn’t meet a person he didn’t want to play with and love on. If I remember correctly, he was adopted pretty quickly the first time but returned to the shelter. Something just wasn’t right with him. We found out then that he also had Lyme disease. He was adopted out again. And returned again. He was in decline. I wasn’t involved in his medical diagnoses or treatments because that wasn’t my job. My job was to make his stay with us as amazing as possibly despite whatever he had going on. I think he ended up having the kneecap issues, Lyme, a slipped disc and undetermined other neurological problems that left him in immense pain and a struggle for any true mobility. Yet we persisted and somewhere along the way we fell in love with each other.

Like any relationship it started with me seeing him whenever I came in for a little bit of loving and a treat. I tried to visit everyone for at least a few minutes when I’m done with my regular work. He’d jump and wiggle and squiggle and lavish his visitors in kisses while we doled out even more head scratches and belly rubs. Then he’d be gone for a few days or weeks but end up back with us for whatever reason. Each time he came back I spent more and more time with him. I can’t imagine how scary and confusing it was for our little ball of fluff to go to these homes and then come back and leave again but the more time he spent with us, the more he got to know each of us and the more demanding he became of some of us.

He was a house favorite but we just kind of got each other. I would come in early before hours to do work with puppies and every time I walked by his corner room (the NYC ASPCA is basically the Ritz of shelters) to strip and redress my PPE he would wiggle and cry knowing that as soon as I was finished he was first up for a visit.

As he lost use of his legs and was in more pain, I spent even more time with him. I remember when I was in his place, not being able to use my right side and control my extremities. Dogs are resilient but they don’t always come back like people. Still, we just got each other. I knew he was struggling with his gamut of health issues but I was so completely unaware of just how bad it was. He still jumped and squealed and barked for me to come see him every morning. He still dove into my lap and jumped up to aggressively lick me until I pulled him off. And then he didn’t. He wiggled and cried and jumped but then when I came in his room he’d give me a few kisses and then crawl into my lap and fall asleep. I’m sure there were signs and if I had inquired, someone would have told me more detail of his quickening decline but I simply wasn’t there enough to really see what was happening.

I started spending even more time with him. He would fall asleep in my lap for hours. I started bringing my book down with me knowing we’d be spending the rest of the morning or afternoon together. I’d lay down with him and take a nap myself. And then came the talk of fosters and fospice and euthanization (the ASPCA is a no kill shelter except in extreme behavior or medical cases) after his surgery didn’t work like they had hoped. If there’s one thing I regret with my Sweet Froggy Prince it is that I didn’t know just how bad it was until it was too late and that I didn’t make the decision to bring him home quick enough to make it worth the quality of life difference. We did everything we could but nothing was enough. I never did get to bring him home but I do know his last days were well worth it. I was basically sleeping at the shelter with him all day until they kicked me out at night. I only left when others came to visit. He was never really alone. I made sure of it.

As most people can attest, every so often there is a student or patient or client that hits you harder than the others; you fall harder, are more desperate to fix them or yearn for them to succeed. Froggy was mine for this time around. I’ve seen animals come and go. I’ve seen them in rough shape and some have to be euthanized, my own included. It’s an incredibly emotional field. Your cry, get yourself together and channel that energy and determination to the others who still need you, who still have a chance and just keep swimming. Luckily when you work with animals, they tend to notice that you’re sad or under the weather and instead of you lavishing on them, they take care of us. Even in his last days, Froggy was taking care of me. I had just had my infusion and came in right after to see him. He crawled into my lap, wrapped himself around my arm wrapped in bandages and fell asleep after giving it a thorough once over. We really don’t deserve them.

GOOD NIGHT MY SWEET FROGGY PRINCE

Take Your Proprioception to the Barre

This may be a somewhat disjointed article (more so than usual) because I’m trying to tackle three large topics that are very much intertwined for the purpose of this conversation and probably should have been previously addressed separately but instead I’m going to explain as much as needed along the way as to why this is a choice workout and take on the medical/kinesthetic detailed background in a later article or in the comments. I’ve never been one to do things in the “proper” order anyway. DESSERT FIRST!

Sooooo….

We’ll start with balance and proprioception. Proprioception is defined by Stedman’s Medical Dictionary as a sense or perception, usually at a subconscious level, of the movements and position of the body and especially its limbs, independent of vision; this sense is gained primarily from input from sensory nerve terminals in muscles and tendons (muscle spindles) and the fibrous capsule of joints combined with input from the vestibular apparatus. What does that mean and why is it important? Well, the basic translation would be that your body takes in sensory input from its various receptors throughout your body to note where you are in time and space and maintain that location. It’s important enough to be one of the key factors tested in every one of our neurological evaluations and usually the most dreaded. Put your feet together, stretch your arms out in front of you and close your eyes. Now stand on your left foot. Stand on your right foot. Sound familiar? That’s proprioception. My favorite measure has always been on the swing set; get swinging nice and high, close your eyes and let go of the chains. How’s the balance? Do you feel wobbly? Are you nice and stable? Do you fall off? Do you feel like you’re going to fall of? That’s proprioception or lack there of.

Now, I spent two long years in physical therapy doing the same exercises over and over to increase my core strength and balance and ultimately, proprioception. I had to learn, without access to touch stimuli, where I was in time and space and how to keep myself there. Bridges. Planks. Clamshells. Stand on one foot and close your eyes. On your toes. On your heals. Bicycles. All of the core building and stabilizing movements that most people hate to do. But at the end of the day, proprioception is a major key to preserving function in the long run. It may not be entirely scientific but I like to believe that the more you have to lose, the stronger you are in the more highly affected areas, the longer it will take to break it down; my own uneducated idea of a self initiated protective factor.

That said medium cardio and high strength training workouts have been on my radar and top of my list to try and review as part of the “able” disabled series. And barre is currently at the top of my “run, don’t walk” list…okay maybe speed walk; it’s a bit toasty outside for a run for most of us.

Barre is basically a series of fitness classes derived from actual ballet workouts but made accessible to those of us who aren’t (and possibly shouldn’t be) ballerinas. My choice studio in NYC is Physique 57. It focuses on strength and balance and stability and a certain level of grace (that if you’re anything like me is completely unattainable but we can dream). It is everything I did in PT but amped up a bit. More reps. More positions. And a whole lot of squats and pushups. The bonus is that even it New York City, it costs less than PT and I get an hour instead of thirty minutes (but no stim, massage or heat…womp womp).

They say, “embrace the shake,” which very much falls in line with my own, “if you’re sweating it’s good, if you’re shaking it’s better.” But they also advocate not pushing yourself beyond your own capabilities. The barre is used for stability in exercises that you may or may not be confident in (or physically capable of) performing without assistance. While you’re pulsing out those ridiculously low squats on your toes and are shaking so bad you might fall over, you have the barre to help you push out those one or two extra reps. And never feel intimidated because if you look around the room, every single one of us stands up, shakes it out, and jumps right back into the set. And while it is one heck of a workout, it is limited in cardio to the point of maintaining an increased heart rate but not so much that you should have to worry about negative medical effects from the autoimmune side of things (I am not a doctor and speak only from my own experiences so always consult with your doctors first).

 

 

A random side story/recommendation as to just how accommodating the studio is:

I didn’t know it walking in one day, but I was about to get hit by a lay down or fall down day. I easily made it through our warmup and arms session but by the time I got to the barre, about 10-15 minutes in, it was simply not happening. I thought it was a quick wave, so I sat down for a minute and waited for it to pass. I got back up, took it to the barre and again nearly passed out. Although the instructor assumed I was lightheaded because I hadn’t eaten or was dehydrated, she and another instructor taking the class helped me out to the lobby sofa where it was much cooler, got me water, a banana and an apple and hovered until I swore it wasn’t a not eating thing but an MS thing. I was then helped to my Uber and received an email the next day just checking in. They care even if they really make you want to cry some days. Outside of (and possibly even within) classes where I personally know or have worked with the instructor, it was by far the best, most caring team I have ever encountered in the fitness

I LOATHE SPINNING but I do it anyway

Let me preface this whole article by saying I HATE CYCLING AND SPINNING. I just need to make that clear because I’m trying to be as objective as possible about something I continue to do because it’s good for me despite loathing everything about it

(breaks into song):

My pulse is rushing

My head is reeling

My face is flushing

What is this feeling?
Fervid as a flame
Does it have a name?
Yes!
Loathing
Unadulterated loathing
— What is this Feeling, Wicked the Musical

Back to fitness.

I don’t know about you but as an incredibly competitive person, I feel like I’m always up against others and myself. Living in New York City has only infinitely ballooned the issue. Therefore, fitness classes that in any way quantify your workout beyond personal gains tend to be utter failures for those like me simply because I will push myself, well beyond my own capabilities in order to beat myself and those alongside me. PR or ER (personal record or emergency room) is a very real thing and in today’s society, we have moved beyond simply activity tracking and into that competitive bubble where we all have apps and challenges and competitions so I’m sure there’s more than a few people who share this problem or else the industry would not exist.

That said, my workout of choice for this post is FlyWheel. I’m not a huge cardio fan at this point in my life but if I have to do it I want quality cardio. FlyWheel is quality cardio and unlike some of the other fad cycling classes, the focus is on that quality cardio, form, listening to your body, and not doing weird dance moves that should never be done while cycling for high risk of injury. In my experience, the instructors are trained in fitness and anatomy vs other brands where a dance background is preferred (very different from cycling), they are knowledgeable and helpful in the subject matter and know how to correct both to accommodate prior injury and prevent new injury.

As far as the studios in general, they are quite clean and modern; very typical of any boutique fitness studio. Their “stadiums” are much smaller than most other spin classes I’ve attended. If you preregister for your class, a bike number is assigned to you and your shoes will be waiting in a cubby for you when you come in; no waiting in line for a pair of shoes. They offer complimentary water, towels, fresh fruit (usually a bowl of apples and bananas on the tables), lockers and have full amenity showers and changing rooms (although you may want to skip the closing stretch to grab a shower if you’re on a time crunch as there is usually a short wait). They’re really great spaces.

So cycling just not being for me does not mean I’m not going to continue doing it because it pushes my limits and comfort zones. No one wants to plateau, especially when training for a physically vigorous challenge. Cross training is key.

So FlyWheel. It is amazing for me in many ways. I need more cardio and more experience controlling breathing and my core temperatures during more strenuous cardio. I need an instructor if I’m going to spin otherwise I will half ass it like a champ. It gives me current stats on how I’m performing at any given moment via a nifty personal digital display on each bike. Those stats, much like the displays on a treadmill or elliptical, help me pace myself and follow the lead of the instructor. I am absolutely terrible at pacing myself through intervals. I am always going too fast through the slower parts. It also keeps me from sprinting all out vs holding steady at an increased output during the harder intervals and only sprinting during actual sprints. It also allows me to see how I’m progressing via their online profiles.

For me, FlyWheel is also dangerous because it does quantify and rank your performance against other fellow classmates using what I can only assume is an algorithm taking into account your rpm, torque, etc., which means fight to the death…usually my death because I’m the one with issues. There are digital “leaderboards” in the front of the room although you do not have to displayed on them if you don’t want the whole room to know you’re dying over in the corner just spinning in first position or that you’re kicking everyone’s butt in third with full torque. Even if you choose not to be displayed on the public leaderboards, you can still compare yourself to the leaderboard numbers using your personal display. You can also sign into your profile online and see how you ranked against everyone in the class afterwards and see how you fared within your own previous performances. And if you’re like me, you can then berate yourself until your next session for missing a PR by TWO MEASLY POINTS!!!!

As you can see, many of the pros and cons overlap with the cons being more psychological than fitness related. In general, I recommend FlyWheel or any cycling focused spin class for someone with injuries or limited fitness experience. It is lower impact on the joints compared to walking or running but more so than say, an elliptical. Well-trained instructors are key and as always, listen to your body and go at your own pace. Basically do as I say and not as I do.

Enjoy the sweat!

Fitness and the “Abled Disabled”

By now it’s no secret that I’m training to climb a mountain (just in case you missed the entire temporary overhaul of Hazina Safari for the duration of the #MSvsTheMountain campaign) and it’s been a heck of a ride so far but also a very informative one.

PC: Michael Madsen

PC: Michael Madsen

It's not always pretty...actually it's almost never pretty

It's not always pretty...actually it's almost never pretty

Now, I frequently say that, “if I can do it, anyone can do it,” when it comes to various fitness activities. I don’t mean to demean or diminish anyone (or any practice) when I say that, but given the right mindset, leadership and a little hard work, everyone and anyone can make a step towards being more fit. You might not be hanging from the rafters any time soon (maybe you are) but you can take a short walk, take a long walk, get off the elevator a floor early and take on that last flight. Don’t have weights? Use a water bottle. There are so many little things and small hacks you can do to move (see what I did there?) towards a goal to be even just a bit more fit. And if I, with a fused spine, numb hands, seizures, little bit of crazy and other random MS symptoms can accomplish my goals (hopefully) then you can too. I know I am the exception and not the rule (yup I just pulled a He’s Just Not That Into You quote) when it comes to level, but it is, on your own level, possible. You just have to decide what your goals is (with the help of your doctors if the situation requires) and work toward it. If you said to me three years ago when I was laying in a hospital bed, unable to feel half my body and on excessive amounts of IV steroids, among other things, that I would lose that 30lbs of steroid weight, be back up and moving and training and know how to use my hands and arms without always being able to feel them and about to head back to Africa to climb one of the Seven Peaks, I would have never believed you. Yes that was a lot of commas and “ands” and and and just because. I digress.

 

So in reality this has been a much longer adventure, going all the way back to my early teens when I had my spinal fusion for scoliosis (Harrington rods). Not being able to bend your spine has a weird way of restricting fitness and limiting recreational options. I couldn’t do gymnastics or dance and I definitely was told I wasn’t supposed to play contact sports again (we all know how that worked out with lacrosse all the way through Clemson). Don’t tell anyone but I also rode a roller coaster, six months after having my spinal surgery, against all medical advice, still wearing the brace because they were afraid of the hardware pulling out of my still too soft bones (bones are “soft” until you stop growing much like the soft spot on baby’s heads).

When I moved to New York City, it was eye opening in so many ways. And then Groupon and LivingSocial and GiltCity became a thing. I suddenly had a new confidence to try things I’d always wanted to do but had previously been scared of or felt they were outside of my abilities. All of these new discount and flash sales made things financially accessible in a way they previously hadn’t been and if I couldn’t do it after all or didn’t like it, it was a minimal sum that I was out.

AntiGravity is one of the big ones. I had seen aerial yoga and other similar performance inspired fitness classes but never had the kahunas to just go for it.  Again, I’ve never been able do dance or gymnastics or anything like that but I bought a Groupon pass anyway. What was the worst that could happen? If I didn’t like it or couldn’t do it then I would simply finish out my pass with mat yoga. I never looked back. It made aerial arts and gymnastics and dance accessible to me and thanks to some great instructors I have continued to practice and succeed and even train as an instructor. Yes, there are a few moves I have to modify. I can’t do most things that involve the bulk of weight on your hands but forearms always work as a great alternative and I can’t do anything that involves a rounded spine but I can do it. I CAN DO IT!

So back to fitness for the able disabled (tangents, I know). I’ve been doing a sort of experiential experiment with different studios, fitness classes, instructors and genres to not only find what is going to work best for me as I train to climb this mountain but also to recommend to people like you what could potentially be helpful to you as you navigate a really intimidating arena that is of immense benefit your life and wellbeing, no matter your status of ability/disability because let’s be honest, just showing up is sometimes the hardest part.

I’ve been to spin classes and yoga classes and rowing classes and aerial classes. I’ve learned a lot about my competitive nature and myself. I’ve learned that anything that keeps track of your output or progress is a no go for me because I’m too competitive a PR or ER (personal record or emergency room) is a very real thing in my screwy brain. I’m looking at you Flywheel.

Over the next few weeks I plan on breaking down my experiences with the help of ClassPass to keep it interesting and switching it up to try things I’ve never done before (I’m in my 30’s and had never been to a spin class until February of this year!!), paying far less for classes that are incredibly expensive in this city (I get 5 classes per month through them for maybe $75 which would be the equivalent of 2 full price classes at any studio since most run between $35 and $45 per session…go ahead and pick your jaw up off the ground. We know how ridiculous it is but the alternative is kicking your own butt at your local Planet Fitness or similar gym which seems ideal until you realize you only do the exercises that you like and not necessarily the ones that you need) and a few studio specific memberships of the ones I love and hurt in a the good way.

Stay tuned…

 

*I would however, recommend (and encourage) you to NOT do what I tend to do and not tell your instructors about your physical limitations until a few weeks in when they try to correct your form and you answer, “oh yeah, by the way I don’t bend that way because my spine is titanium” because as an instructor, most of us will not judge you or push you any less than the other students but we will make sure that you don’t hurt yourself and give you alternatives to get the same results from a variation of that move (sorry LA). It took me to the point of becoming a certified instructor to realize that to be true because I’ve long had a fear of people underestimating my ability based on my disability. 

The Importance of a Medical Advocate

It has taken the last two weeks for me to really digest everything that happened and how best to relay it to you anything more productive and informative than an angry rant about never getting a break.

Let me start by saying that obtaining pharmaceutical treatment for any cancer or chronic illness is drastically different than that Z-pak for your last case of the flu. This comes from my own personal experience on both oral and IV treatments. 

After multiple rounds of tests to find the best treatment for what ails you, your doctor prescribes and then the fun begins. The drug then goes to your insurance company for preapproval (PA) and a request to the pharmaceutical company. You are enrolled into a prescribing program and are assigned a caseworker. Depending on your insurance, the medication and your doctor, that might be the extent of your hassle, especially if your medication is oral. It is usually shipped to your home monthly and you will have periodic check-ins from your caseworker and a registered nurse from the pharmaceutical company as well as your doctor.

If your treatment is in IV form and needs to be administered by a medical professional, it starts to get a little sticky. The next question is how does your doctor obtain the medication. Do they order it directly from the specialty pharmacy on a case-by-case basis or do they bulk order and store on-site? Odd question but it turns out it’s quite crucial as to how your insurance to covers it because the former makes it a pharmaceutical (prescription plan) benefit while the latter qualifies it as a medical procedure under general medical benefits. Confused yet? It’s taken me three years to get to this level of understanding so don’t worry if you’re not quite following. I still don't get some of it the first few times they explain it; and sometimes, neither do they.

Now your insurance will more than likely only cover the treatment under one plan or the other. For instance, my insurance categorizes my infusions under my medical plan so I have to go to an oncologist because my neurologist orders for each person. So now I have my doctor (neurologist) and a site of care doctor (oncologist) where I get my treatments. The neurologist prescribes the drugs and the oncologist gives them to me. My doctor prescribes for six months at a time as restricted by the pharmaceutical company and my insurance approves a year at a time, or 13 treatments. On top of that, I have to go to an office in network that is specifically trained by the pharmaceutical company to administer their drugs that also obtains the medication within the confines of insurance regulation. Then toss in one more wrench; most infusion centers, by policy, do not infuse patients that are not their own. To give you an idea of what all of those hoops and requirements mean when finding a site of care, there are only TWO offices in all of Manhattan that qualified. Talk about options.

All of the biologics I’ve taken thus far for my MS have worked this way; they are not available through your traditional neighborhood pharmacy (even the oral biologics). When the process works, the patient has little to do but show up, pay your copay and receive your infusion treatment. When the process breaks down, a new circle of hell has been entered. I wish the story ended there, bringing light to just one labyrinth that goes into simply obtaining life saving treatments; sadly, it does not.

Still with me? How are those Venn diagrams and flowcharts looking?

It is worth mentioning that I’ve been taking the same infusion therapy for three years now. March 27th was actually my anniversary as I started my fourth year. I schedule my entire life by these appointments. I have them scheduled a year in advance and can count out four weeks between treatments like clockwork to organize travel and work and anything else that might take me too far from that tether to an IV. Up until then, it has been a rather seamless and painless process. It all happened behind the scenes between all of my doctors and other parties. This time however, everything fell apart and I had no idea.

On Tuesday of the week before my treatment I received a frantic call from my oncology nurse who was running through the following week’s patients and stumbled upon the fact that I was no longer authorized to receive my treatment with no reason why. She had no idea if we had discontinued treatment or I had relapsed or any of infinite other scenarios had occurred; it is oncology after all. No one had told them anything. No one had told me anything.

Insert the emphasis of being or having a medical advocate.

I called the pharmaceutical company. They were the ones that had unenrolled me from their program. The pharmaceutical company tells me that they have neither the PA from the insurance company or the reauthorization from my neurologist. I know nothing of this. No one has told me, the patient, anything and in the last three years I have never had to be directly involved in the process. It had always rather magically happened behind the scenes and I just showed up for someone to stab a needle in my arm for a few hours, once a month; nope, not anymore.

Well I have a copy of the PA so I email it to them with all of the verification codes they need but I’m still missing the reauthorization from my other doctor and my oncologist can’t submit it because they are not an authorized prescriber; they can only administer. So I start calling and emailing my neurologist.

From Tuesday of last week, until Monday of the following week at 7:45pm, I called and emailed and texted both my neurologist (who was out of the office) and the pharmaceutical company four times a day every day to not only stay informed on my own medical future but also make sure that shit gets done and my case didn’t fall into what I imagine to be a black hole of lost paperwork. Please excuse the language. And in that week I have learned one thing: being and/or having a medical advocate to fight for your best interest is crucial. I also now understand so much more why and how people end up going off meds even when they’re covered, paid for and approved. Again, when the system works, it works. When it fails, it is an epic catastrophe.

Now for the really the good part. It is not the policy of the pharmaceutical company to inform the patient or the site of care if the status of enrollment has changed UNLESS treatment has been discontinued by the prescribing doctor. If they’re waiting on paperwork, you’re basically SOL unless you have an amazing nurse like mine who checks her patients’ statuses and treatments a week ahead of time. If it weren’t for her and the accidental discovery, I would have shown up Monday morning and been told that I couldn’t receive treatment, or worse they would have given me my infusion and ultimately risked their accreditation to infuse anyone in the future. If it weren’t for her, the week of fighting for my own well being would have started Monday, the scheduled day of my treatment, and put me a week behind on my monthly treatments, risking my overall health and ultimately my remission. Thankfully I have just enough understanding of the system and the medical jargon paired with more than enough raging bitch to be my own advocate. If you aren’t that person, you need to find one. I’m also fortunate enough to have had that person in the beginning to set the example when I wasn’t able to do it for myself and when I didn’t know what I know now; a translator, a fighter, a partner, an advocate.

At 7:45pm on Monday night, I was finally approved and good to go. I called my oncology nurse Tuesday morning and she squeezed me into a fully overbooked schedule to make sure that I received my infusion "on time." Robin is a hero.

Had I not spent that week calling four times a day to check on the status of my enrollment, not forced them to keep constant contact with my neurologist’s office instead of every two weeks, I would not have received my treatment that day, a day late but received nonetheless. Had my nurse not stumbled upon the issue, I wouldn’t have received my treatments. Had I not worked my way up the phone tree at of the pharmaceutical phone lines, I wouldn’t have received my treatments.  Had I not argued my way through rep after rep and fought through the scripted answers, I would not have received my treatments. Had I not kept reps on the phone while connecting me to the next tier, I would have been hung up on like so many times before. I learned, I fought and I succeeded. Had I not had anxiety meds, a support system to vent to and puppy dog cuddles, I would have lost it and even more tears and anxiety attacks would have flowed. I was my own advocate and I am exhausted.

Everyone needs an advocate. If you don’t have one and can’t be one, the system will walk all over you because at the end of the day we need that multibillion-dollar pharmaceutical company or insurance company more than they need us. We have no other option. They have people like us beating down their door. We fight and beg and do more than half the work but they still get the tens of thousands of dollars for each month’s treatments. It’s our lives. It’s our productivity. It’s our health and we need to fight for it because we have no other options.

This is how the system works and it is not just insurance that causes problems. It’s easy to blame them but in this case, they’re not the ones who dropped the ball. The bigger issue as that it is really hard to fight for your health and well being in an already grossly confusing and intricate system when you are left out of the conversation regarding your own medical care. How is it that as the patient, I am not a part of the conversation? How is it the policy to NOT contact the PATIENT? Why is it that after three seamless years the line of communication completely broke down despite knowing months in advance that all of these renewals would be needed like every other year? Who is the priority here because it certainly isn’t the patient? Imagine trying to do all of this around life, a career and other treatments like physical therapy and occupational therapy. My priority should never be fighting the bureaucracy to get what I need at the failure and oversight of others. My priority should be fighting my disease; to keep it at bay and to keep myself a fully functioning member of society.

Again, I need them more than they need me. This whole ordeal made it transparent.

Insomnia, drunks and snark OH MY

I have a raging issue with snark. My brain and mouth completely lack any sort of filter and I say basically whatever comes to mind.

For example, my memories on Facebook today reminded me of a scenario from two years ago. I'll quote the full post

Minding my own business browsing the produce at Westside (grocery)...
Little girl: MOMMY why does SHEEEE get to squeeze the Cuties before she buys them?
Me (not missing a beat): Now THAT is part of being a woman
Oh wait she was talking about oranges 😵 it’s a wonder I don’t get slapped sometimes

So given that little background, this happened last night...

I couldn't sleep again (big surprise) and was hungry so I ran to the bodega around 3am. I ordered my food at the counter and waited to the side bc that's usually around the time the cops come in for their break. Instead a bunch of drunk guys come in, obviously headed home from the bar or party and kinda pissed about going home without any ladies. They start hitting on me (pjs, fleece, glasses, big rats nest on top of my head) and then try to tell me they play football and are kind of a big deal.

My response: if you could take your eyes off my ass long enough to read my Clemson fleece you'd realize that no, when it comes to football, I'm the big deal. Goodnight gentlemen. 

Guy behind the deli counter nearly dies laughing bc he has told me many times how much money he made on our game 😂😂

My snark has no limits. Just don't split your pants laughing ;-) 

Sunday Funny

Today I ran to Duane Reade. For the non New Yorkers, that's a pharmacy that might be as prevalent as Starbucks on every other corner. I needed a few items. The store was about to close and as I was about to enter the checkout queue, I ran directly into an older gentleman. I channeled my inner southernbelle and told him to go ahead before me. It wasn't like there was a line afterall. He takes one look into my basket and says very sternly, "NO, you go ahead. The only thing in your basket is tampons, advil PM and chocolate. I have a wife and three daughters. I KNOW BETTER." We both had quite the laugh and I went ahead to checkout with an extremely embarrassed/uncomfortable cashier. I giggled the entire four blocks home. 

Dating While "sick" in the Digital Age

This is going to be an amalgamation of dating, or at least attempting to date, as a 30-something single woman in New York City; A woman who has not yet broached the subject of being “sick” with any potential new beau (sans those I’ve known before and throughout my battle) while delving into online and app based dating. Dating has changed a lot in those last few years. Let’s just say the pickings are slim at best and I’m more and more disillusioned with each match. Who knows though, there might just be a happy ending in it for me eventually. But until then, I shall rant now and divulge in stories in subsequent posts.

 

If you're going to go there, I can play the game. I'm just not sure he understood my humor.

If you're going to go there, I can play the game. I'm just not sure he understood my humor.

Now the digital age has changed so many things about dating for the better; the ocean of fish has expanded exponentially and you can Google beforehand to narrowly dodge the bullet of a pathological liar or potential serial killer just to name a few. There is no denying that. I have done my fair share of detective work. But it has also made personal information that much easier to dig up before it comes up organically in healthy getting to know you conversations. And then there are those years of embarrassing Internet posts from the last 20 years before some of us finally realized that the Internet never forgets and while we wait for the rest of the population to have that epiphany. For my, my biggest thing is that if you Google me, you’ll find the usual spattering of work and academic information but you will also find this website and some of my fundraising accomplishments. All are things that I tend to be very open about but also things I prefer to tell people in my own time and in my own way.

 

I’ll start by saying that I tried this whole app dating thing maybe two years ago. It ended up in two guys bailing on me before a first date, one Tinder stalker who started following me (both online and in real life) through a now ex mutual friend on Facebook (Tinder links through Facebook so users can see mutual Facebook friends on the profile page in the app). And the icing on the cake was the guy who seemed nice but stood me up on our second date, leaving me waiting alone on a street corner in NYC in a misting rain. I quit after that. My self-esteem couldn’t take any more.

 

The inspiration for this whole story series (and it will be a series until I can happily say it no longer needs to be documented) came out of a need to address a more personal issue in dating, as the title implies, dating while sick in the digital age. If and what and when to disclose an illness of any kind is a personal decision and dependent on a myriad of factors. My own preference is not to tell people right away. I am a person first. I’m an awesome person at that. My friends tell me so regularly. I am in remission. I have and continue to tackle my obstacles and you would never know I was “sick.” Therefore it is not a defining aspect of me and should not be a deal breaker before the deal is even drafted. But it will also include the good, the bad and the epic fails, including tonight’s event I’ll regale you with shortly.

 

So my first four first dates via dating apps were abruptly canceled a day or less before our proposed meeting. Why you might ask? Because they goggled me and found my website and a blurb on the MS Society website about my fundraising. We live in a society where people are so stuck in their own worlds that the idea of even meeting someone not deemed worthy due to a non terminal and stable genetic disease that no one has ever asked for, is completely acceptable with a simple, “yeah, I’m not really into the dating the sick girl.” Sick girl my ass. I do more, try harder, work more, fight stronger than most of you guys and do it with grace as I stumble over a few hurdles along the way. But I must say, you are not one I will stumble over. You are the ones that I will trample without looking back, preferable in a fancy pair stilettos to drive the point home. And yes, I’m angry and hurt and questioning my own self worth because people like you unfairly judge people like me. Maybe you should use that Google button to search MS and success stories and prognosis and celebrities who you’d also never know had the disease. I think maybe I’ll start discriminating against people with less than perfect eyesight.  

 

Tonight’s interaction was of the best so far in a surreal conversation reminiscent of a time where AIM chat room and MySpace introductions first included the line a/s/l…a term lost on much of today’s youth. But I digress. So I start our Bumble conversation in my usual fashion, with the game two lies and a truth. He plays along. We’ll call him Isaac. Isaac compliments me a few times and my game sparks a bit of conversation. We chat for a few moments and then he pulls that, “well you’re up awfully late line.” My honest response is my usual 2am issue: insomnia and a snoring dog who thinks she should sleep on my head. And here it comes. As a female you can see it coming from a mile away, maybe even 10 miles. And there it is, “I’m bored and horny. What are you wearing?” My automatic response was, “yeah, that’s not where this is going. Sorry.” And he unmatched me before I could even click out of the text screen.

 

Thirty-five years old and that’s still what your fallback is when meeting a woman? You told me less than five minutes ago you weren’t into hookups and then pull that crap? Give me a break Isaac. If the convo didn’t disappear as soon as you unmatch, I would have screenshot that exchange and Bumble shamed Isaac as best one can Bumble shame without self shaming. Is this really the dating pool? I’ll just go ahead and say it…this is why I’m single. 

I'M BACK!!!!

Let me first apologize for such an extended hiatus. Sometimes life gets in the way in some of the most unexpected ways. Sooooo the last few months: We found a large tumor in my fur child but it was thankfully benign and we were able to remove it fully. I had some health issues but all is on the mend. I was in a car accident in the back of a cab and had a bit of a setback there. I’ve been taking care of myself and some friends dealing with various issues. It is so important to take care of each other.

 

Those of you that follow me on social media have been able to keep up with some of the crazy but I’m back and ready to start back here with all of the yummy food, crazy stories and puppy dog pictures.

 

That said, I’ll leave you with a sad sad puppy mourning her Clemson loss this past weekend. 

Tourists, Catcalls and Racial Slurs OH MY

I’ve started this piece quite a few times over the last six weeks or so and there has been much internal struggle in whether to share and if so, how exactly to do it. For one, I’m embarrassed at my own behavior and that this is not a one-time reaction on my part. It is contrarily a coping mechanism I use more regularly than I should or should even have to. My second contention was that it didn’t seem extraordinary to me. After a similar more recent event, the latter has encouraged me to speak out because the more catcalling and aggressive confrontations that we don’t talk about, the more we passively condone it in a bystander effect situation. It should not be normal. It is a degradation that should not be something we don’t consider out of the ordinary. I also want to give credit to strangers who step in and encourage others to do the same when possible because even if we don’t need it, we do appreciate it. Forgive the scattered storytelling, it's hard to get it all across in words. So here it goes…

I thankfully live in a portion of Manhattan that attracts far less tourists than the norm around the rest of the island. That said, there are three main attractions that the double decker buses do drive by in my neighborhood and drop of visitors to explore. On of those plazas just happens to lie between my home and the park. So I was taking the pup to the park on a regular afternoon. I’m dressed in the standard New Yorker garb of dark sunglasses, headphones in, resting bitch face strong and visibly on a mission to get to the park with the crazy one (not that any of that really matters). Three men, quite obviously tourists, start whistling and cat calling, yelling rather obscene “compliments” my way. Some so inappropriate I’m not even going to write about them but to give you an idea, “got a pussy as pretty as that pup you got there?” Needless to say I already felt I needed to take a shower to wash off the grime.

I ignore them and continue my short walk across the plaza, on a mission to get to the park without punching an obnoxious tourist (a daily goal in my book). They continue and begin to approach me, changing their verbal assault from lewd “compliments” to defensive personal and character attacks, “hey bitch, we’re talking to you!” and, “think you’re too good for us?” and my personal favorite was another too lewd to mention statement on New York women.

At this point they were about three feet away and blocking my path. The dog had sat down next to me in defensive mode. Insert my embarrassing go to reaction, not speaking English. I start speaking German and try to go around them. Thankfully my dog knows her commands in both English and German. Then the situation changed completely.

The all too common aggressive catcall scenario quickly turned into an even more heated confrontation about immigrants and learn English if you live in our country and go home. They made Nazi and Hitler comments. They told me I shouldn't be ignoring a means to a green card. It was a very small glimpse into what actual immigrants experience and must feel far too often, especially in today’s ethnic climate. But I was a fraud. In my attempt to slip out of a difficult and potentially dangerous situation, I became an imposter in an increasingly larger confrontation and societal problem. Embarrassment suddenly turned more into guilt and shame. 

There was one positive to come out of all of this. A bystander came to my rescue even though I really didn’t need it. He was a stranger. He was also a tourist. He was former military with a stint in Germany. In broken German, he asked if I needed help and I explained to him in German that I was indeed American, knew what they were saying and spoke English just fine. He kept up my ruse, speaking only in German as he walked me across the plaza and the street and left me to go on my way to the park. I don’t know who he was. We never exchanged names. I’m not looking to track him down in some sort of Cinderella story. I thanked him before parting ways and his simple response was that he hoped that someone would step in for his sister or daughter or mother in the same scenario.

There is so much in this whole tale to disseminate and analyze and condemn, my own actions included. There are so many things to consider in our own behaviors and that of others, how we treat other people and how we normalize things that should not be normalized. It’s also a testament that there are still good people that are willing to step in when things get dicey and I cannot be more appreciative for those people.

I’m turning the comments off on this one because this isn’t really meant to start a debate. It is meant to simply be an anecdote as to the social climate that we have cultivated and currently live in. The virulent comments and circular arguments exist in just about every other forum.

So this is my story and a thank you to all of those who intervene rather than stand by and watch. 

Doubted Truths

This is a somewhat odd reflective rant but bear with me

Last night I couldn't find anything on tv and, despite my disdain for reality tv, found myself half watching Shahs of Sunset while writing. Most of it was a bunch of superficial crazy and lots of drama, the gold standard for most Bravo shows but one storyline really caught my attention. There is a girl with RA, which like MS is a progressive autoimmune disease. I don't know much about RA, or her story with it. I don't think it really matters for the purpose of this post. But there were a few things about it that hit home for me.

1. The fear, uncertainty and confusion of navigating more aggressive treatments when other options have been exhausted

2. The desire and even need to maintain normality in daily life, even to the detriment of your health, be it wearing heels and partying or simply going to brunch with friends and the isolation when your best attempts fail

3. The general lack of understanding and disbelief of those around you in how good or bad your health is at any given moment based of how you look or act because the disease is very much invisible. 

I think the last one hit hardest. Her friends and family questioned her illness and its severity as well as her treatments and chemo. They accused her of being dramatic and over exaggerating to garner attention and sympathy. Maybe she is. Again, I don't know her or her story. That's between her and her doctors. 

Let me just tell you that, as I sit here at my oncologist with a needle in my arm receiving my monthly chemo treatment for MS, chemo is a very real treatment for autoimmune diseases as a disease modifying treatment. It's kept me in remission for nearly 2 years now and hopefully indefinitely into the future. Remember, there is no cure for either RA or MS or a handful of other progressive autoimmune diseases. Let me tell you that just because I look fine, I may not feel fine. That my monthly chemo does not affect the crazy amount of jewfro hair that is currently out of control in the NYC summer humidity. That if anything, I underplay my health, not exaggerate because no one wants to be the sick one and it gets old after awhile for both me to tell and for you to hear. That I am not lazy. I don't want to be a homebody but it's not always by choice. Believe me, I'd much rather be out and about conquering the world via the path less traveled. Quite frankly taking care of my health can be rather boring and lonely.

This isn't a feel sorry for me I'm sick pity post. Through hard work, a little sacrifice, modern medicine and a great team of doctors, friends and family, I'm actually doing quite well. It is a request to reserve judgement and if you don't understand, ask questions. I've long been somewhat paranoid that the same conversations and skepticism go on behind my back but I will gladly answer questions if you just ask and I know many others feel the same way. Consider how you would feel if the tables were turned.

End rant. Happy solstice Monday ladies and gents.