Can-Can Girl

After the sudden passing of my beloved dog, King, I felt emptiness. I lost my best friend and companion. About 4 days after his passing, I started experiencing numbness in my right leg. Sort of like pins and needles. My arms were falling asleep at night and my memory wasn’t all there. I passed it off as stress, anxiety, and grief.  

But I was finally feeling ready to return to work and the daily grind of life. 

I woke up the following morning and did my regular routine, still ignoring the numbness I have been experiencing. I arrived at work and when I tried to walk up our two flights of stairs to get to the office, I could barely pick my left foot up. It was like my feet became really heavy and my brain wasn’t telling my legs to move. But again, I ignored it as stress. I struggled to get to the top of the stairs. I decided to use the restroom and when I sat down, it felt like the right side of the toilet seat was heated, like really hot. That’s weird I  thought, but again, I just ignored it. 

I went on with my day brushing off these symptoms. The following morning I woke up to my left arm being extremely painful to touch. It was like nothing I have ever experienced before. By this time, my right leg hadn’t gotten any better and was actually becoming more numb over time. But being the stubborn asshole I am, I still ignored it. The following morning I got out of bed and lost the ability to walk properly. My left leg completely gave out and I felt disoriented, very tired, and weak. That’s when I realized I can’t ignore this anymore. I drove to the emergency room. 

Once there they immediately started running tests. They initially thought it was a stroke. I was told the best case scenario would be Lyme’s or Lupus and worst case would be MS or a spinal tumor. Right then and there I realized this is serious and my life would forever change dramatically. People who know me well, know I am very competitive and pretty damn active. I do around 15,000-20,000 Fitbit steps a day. I compete in daily and weekly showdowns all the time! In fact, my dad and stepmom just bought me a brand new Fitbit for Christmas. I lost a 130 lbs—no pills or surgery. Hearing this was crushing to say the least. 

I was immediately inundated with doctors. 2 neurologists, 2 primary care doctors, and 1 viral doctor. They told me I needed a spinal tap along with brain and back MRI’s. Now the thought of a spinal tap scared the living shit out of me, but I had to stay strong. They wheeled me in and it took about 40 minutes of rooting around in my spine to pull any fluid. Just my luck. They had to shoot an IV of pain meds and anxiety medicine into my arm because of the pain I was experiencing. Finally after poking, prodding, and jabbing what seemed to go on for hours, they were able to get what they needed. 

Straight from the table of hell, they put me on my back and wheeled me into the MRI room. They proceeded to tell me that I needed to be in there for one hour and 20 minutes! Let me repeat that. One hour and 20 minutes. They strapped this football helmet contraption on my head and gave me a panic button. This alone scared the piss out of me. I thought why would I need a panic button?! They slide me into this coffin-because that’s literally what it is like. They put headphones on me to listen to music, but that’s a fucking joke because all you hear is banging, beeping, and loud vibrating. And god forbid you open your eyes, it feels like you are trapped. All while having to lay completely still, not moving an inch. 

I made it one hour and ten minutes. I started panicking, sweating, shaking and I felt like I was having a heart attack. I started pressing the panic button like I was a contestant on Jeopardy. They pulled me out and said, calm down, you have about 10 more minutes left. HOLY SHIT! 10 more minutes I thought. But I made it. 

They wheeled me back into the emergency area to await the results. By that time I was experiencing nausea and a really bad headache from the spinal tap. They had to take more than usual to do as many tests as possible in the shortest amount of time. They needed to rule out all viral possibilities. They tested for everything—-Lyme’s disease, lupus, meningitis, West Nile disease, AIDS, hepatitis, and about 20 other different things I never even heard of. All negative. 

After waiting for about an hour the neurologist came in and said- okay, we are waiting on the MRI brain and back scans but we are pretty damn certain you have multiple sclerosis. My stomach sank into my feet. My first words were, am I going to die? Am I going to be able to walk again? Can I have kids? Can I live a normal life? It was like a train of emotions hitting me all at once. But in the grand scheme of things, they said this was the best outcome. A thousand times better than a spinal tumor and having to have emergency back surgery. 

The scans found that I have MS in my neck and white matter in my brain. I have a level 22. Normal people have 0-10. This means my body is attacking itself and my nerves which then affects my walking ability, memory, speech, and a few other things. 

They immediately started me on 2 courses of IV steroids a day and said I was being admitted for at least 5 days. The first 2 days I could barley walk properly. I walked with a gait and I had to use a walker. I was just so tired. But, I had two wonderful physical therapists who pushed me and made me realize that nothing is going to stop me from living a normal life or regaining my ability to walk. 

They gave me exercises to do in the hospital bed. They told me to only do 5 to 6 sets, but clearly they didn’t know who they we’re dealing with! I spent the next 2 nights in my bed determined to regain my strength. I pushed and pushed and by the 3rd day I regained almost all of my walking ability and was able to walk without the walker and just a cane. When this first happened, I could hardly lift my left leg. By the end of the next day I was doing kicks in my bed! I felt like a can-can girl. I cried in happiness and it made me realize that I got this. I am not going to let this dictate my life, or stop me from doing the things I have always done! I will not let this defeat me. 

I couldn’t wait to see the therapists the next morning. As soon as they came in I showed off my new moves. She said in the 35 years she has worked as a therapist, she hasn’t seen this much progress in this short amount of time. That alone gave me the strength to know I got this. Since I was doing so well, I decided I would try and concur the dreaded steps. I went from one flight to two flights! I am not walking without a cane yet. I can work short distances, but tire very easily. I’ll take anything I can get at this point. 

I was released from the hospital yesterday. I will be seeing the best MS specialist in NJ and will have to be put on some type of life long treatment plan whether it be a pill or a shot. But the way I look at it is there are so many other terrible things in this world it could have been. I am extremely grateful as weird as that sounds. It’s all about how you look at it. 

I am a very private person. I don’t post what I eat, who I date, or when I am sick. I don’t like the attention. But I wanted to share my story in hopes it will help other people going through what I have experienced. I am not going to let this define me. I will make this my bitch, because I am a MUTHA FUCKIN WARRIOR. 

I plan to return to work on Tuesday if all goes as planned. I am going to take it day by day. But I am making leaps and bounds and I am very hopeful I will fully recover. 

I couldn’t have done this without the amazing support of so many people. I can’t even begin to express my gratitude. I don’t have the proper words. I have spent the last few days realizing how truly lucky I am. I want to thank all of you from the bottom of my heart. 

Zombies & Bubble Wrap

Horror was one of my favorite movie genres growing up. I would spend what would seem like hours at the local video store browsing cheesy 80’s horror flicks with my mom. Night of the Living Dead, the original black and white version, was my very first horror film I watched. It scared the living s**t out of me. Truth be told, I am still scared of the dark and not ashamed to admit it. Even so, I can’t stop watching every god awful horror movie that comes out. But nothing comes close to the sheer panic I felt opening my email and discovering this:

Hello, the review has been denied as you are not meeting the participation requirement. Your healthcare has been terminated as of January 31, 2019. Insert some more bull***t here. Thank you, UNC Risk Mgmt. 

I stared blankly at the screen. It took me a few seconds to realize what I just read. Then it hit me. OMG! I don’t have insurance. OH. MY. GOD!!! This means that my MS specialist visit wasn’t covered. I will not be able to get the treatment that I desperately need, or start my physical therapy. I will have to wrap myself in bubble wrap. Just roll me around. 

If you don’t already know, I am the woman who handles the health insurance audit for the company that I work for every year. A few days before I was admitted to the hospital I filled out all of the forms, dotted all the Is, crossed all the Ts, and faxed it to them. This happens every year and I didn’t think this year would be any different. But as it turns out, we hired three new employees last year and that was enough so that our “quota” was no longer being met. All of our employees are either covered by the union, their spouses, or they refused coverage because of the high cost. 

Just think about that for minute. Our healthcare system is so broken that we have a few employees that would rather pay the fine and the out of pocket expense of a doctor, than pay for insurance. Healthcare is a human right and no one should have to go without it, or suffer because they can’t afford it. That is why it is extremely important that people know exactly who is taking their healthcare away and why it is so important to vote them out. People’s lives are literally at stake. 

President Donald Trump said, “We totally support people with pre-existing conditions.”

This is FALSE. He supported multiple House and Senate repeal bills that would have ended such protections, is pushing junk plans that allow for insurance companies to discriminate against people with pre-existing conditions, and is arguing in court that pre-existing condition protections should be eliminated in a lawsuit Trump himself predicts would “terminate” the Affordable Care Act and its consumer protections.

Read more here:

I think is it very important that people know this information. I am positive they know someone that is, or will be affected by this. Whether it’s a loved one, friend, or a coworker. We are human beings; not numbers. 

Continuing on……

When I got into work my boss called UNC’s Risk Department and pleaded with them to reinstate my insurance, but they ignored our pleas. At the end of the day I was just a number to them and nothing more. I immediately did a Google search for healthcare companies. I found a marketplace website. I did something that I will regret  at least for the next few months— I put in my cell phone number. I still get at least 8-10 calls a day. I started telling them that someone did it to me as a joke and to please take me off of their list. Now don’t go getting any ideas! 

I picked up the very first call I received. I said I was dropped from my insurance and I need to get coverage ASAP. He said, sure let me start by asking you a few questions— name, address, birthdate, etc. He then asked if I had any pre-existing conditions? I replied, yes I was diagnosed with MS. There was a 5 second pause on the other end and then he said, to be honest we can’t cover you until open enrollment begins, and that is in November. 

November, I said?! Like eight months from now?! My MS isn’t going to take a f***ing vacation till then. I have been living in hell for weeks and now you are telling me I have to wait even longer to get my treatment…… MONTHS?! Yes, he said calmly. Sorry I can’t help you. Your best bet is Cobra. So ask your Human Resources department…I AM THE F**CKING HUMAN RESOURCES DEPARTMENT!

After looking into Cobra we realized it wasn’t an option because we have less than 20 employees. So there goes that idea! A true horror story is when you have an incurable disease and zero health coverage, because you are considered a “pre-existing condition.” 

Zombies? Puulease. This is what keeps me up at night now. 

I ended up calling Horizon Blue Cross Blue Shield of NJ directly. I immediately started with, I have MS and I need to get coverage ASAP. Can you help me or not? And this amazing woman named Tracey, said, you called just in time. We are having a special enrollment period starting in two days. So it’s best that you apply now or tomorrow. I immediately jumped at the opportunity. I found myself yelling into the phone, TODAY! That would be great! This open enrollment is only for people with special circumstances and I just happened to fall under one of them. You have no idea the feeling of relief that poured over me. Finally the universe is cutting me a break. But I don’t want to say that too loud. 

Fingers crossed everything goes through and I get my member id number, so I can finally start my treatment! 

I guess I won’t need that bubble wrap after all. 

But…….we need to send a message to our lawmakers that we are more than just a number. 

WE are people. 

WE deserve better. 

WE demand action. 

And action takes place in the voting booth. 

7,200 Seconds

When I was a kid, I would play barbies for hours on end. I was barefoot all summer long and rode my bike till the streetlights came on. I would catch lightning bugs and make houses for earthworms and potato bugs. I dreamed of one day becoming a marine biologist or a veterinarian. My biggest stress in life was getting a bad grade on a math test and my dad finding out and grounding me. Which happened quite a lot. Believe it or not, algebra still gives me the heebie-jeebies.

Skip ahead 30 years and I am in a doctors office trying to fill out what looks like a larger version of a Staples receipt. Pages and pages of information. It was overwhelming to say the least. After a while my hand started to cramp up and the pain set in. My boyfriend had to fill the rest out, while I sat anxiety ridden waiting for the doctor.

Knock. Knock. A nurse enters and says we have to do a few tests. She brings me out to the hallway and told me to stand at the line of tape on the floor and to read the eye chart. I literally said out loud, holy shit that’s far! It was like looking down a long hotel corridor. I could only read the first 4 lines. You would need binoculars to read the rest. She then told me to walk as fast as I could from one tape line to the other tape line on the floor, which was approximately 20 feet. It took 6.7 seconds, which she said was good. We went back into the exam room and she handed me an iPad with a memory test on it and told me to finish it. She returned a few minutes later to retrieve the test results. It was a breeze. Although, I had two more answers to fill out before it abruptly ended.

The room we were in had a large window that overlooked the parking lot and a side entrance to the MS wing of the hospital. As we waited for the doctor I watched other MS warriors walk in and out with canes and walkers. I wondered if I too, would need one permanently in the future. I had so many questions that I actually typed—more like pecked, three pages of my daily symptoms I was experiencing since leaving the hospital. It took what would normally take 10 minutes, almost an hour to finish. I even faxed it to the doctors office the day before and called to confirm they had received it.

Another knock on the door. It’s Showtime! The doctor enters and introduced herself. She asked me a few questions and we reviewed my typed notes. After about 10 minutes she said she wants to start me ASAP on Tysabri. I need to come to their infusion treatment center once a month and be hooked up to an IV of this drug for one hour. I was told that I would have to wait an extra hour before I could leave to make sure that I don’t have a negative reaction or any bad side effects. I asked, for how long? She said, for as long as it is successful in stopping the progression of this disease and preventing new lesions from forming on my brain.

Just great—-I was just handed a life sentence without parole, my cell mate being an IV.

She continued and said. I would have to come in for an office visit every 3 months and come in every 6 months for a brain MRI. I said, oh that’s not that bad. As long as it is just one scan—I was in there for an hour and 20 minutes at the hospital. I thought my heart was going to blast out of my chest, like the movie Alien. She looked me dead in the eye and said, it’s an hour long MRI. My mouth hit the floor. I might as well get used to the “hell coffin.” This is turning into a real nightmare scenario.

She prescribed me Gabapentin for the pain that has taken up residence in my body. Normal pain killers such as Percocet and OxyContin do not work with this type of pain. When I was in the hospital I had one major pain attack, mostly in my head and upper neck. They did an IV of OxyContin and I literally said to them, this is it? When is it going to kick in?! It did absolute shit. It brought my pain down from a 9 to a 7. Finally the neurologist that was my doctor in the hospital gave me a Butalb. In two minutes my pain was dramatically reduced. I said, f*ck the pain killers, I want this from now on. So as you can tell, I was extremely eager to try Gabapentin. At this rate, I would shove crystals up my ass, stand on my head and spit out wooden nickels if it helped my pain. Now that would be a sight to see!

It was a lot to take in all at once. My boyfriend literally took every piece of literature they had in their office. By the end he was carrying out a 5 pound stack of brochures and catalogs. I forgot to mention through this whole ordeal that he only has use of one arm. He had shoulder and bicep surgery a week before all of this happened. So as you can imagine, it’s been rough to say the least and comical at times- as I’m sure you can also imagine.

I scheduled my three month doctor visit on the way out and we met my Mutha F*ckin MS Warrior squad in the lobby- aka my dad and stepmom. I am super grateful that they came with us and were there to support me. It is crucial to have a great support system. I am one lucky woman.

Now—-Off to the pharmacy! 🐎

I hobbled up to the counter to pick up my prescription and low and behold they said there is an issue with my insurance. Say whaaaat?!!! You have got to be f*cking kidding me! I was just on the phone with them two days prior making sure my coverage was in place. And she said, YES! I even asked them what my insurance covers in regards to physical therapy. They told me 30 visits a year- physical and cognitive therapy combined. Which is shitty. That’s not even one time per week.

Is this some kind of sick joke the universe is playing on me?! I am starting to think someone put a voodoo spell on me. Seriously. I forgot to mention my family and I also found out on the drive to the doctor that my amazing great aunt Mary passed away. I didn’t even get the chance to process it yet. My world was crumbling down around me and I am standing in the middle of the pharmacy yelling on the phone at my insurance company.

My insurance company has been trying to kick me off the past few years, because I am the only one on it at my work. I am also the Human Resources woman who handles this. I wear many hats at my job. Every year I have to fill out audit paperwork and send it back to them. They want everything— tax reports, your first born child, wage reports, so on and so forth. I thought I filled it all out, hence my “check up” call. But apparently I didn’t sign and date a few forms, so the risk department canceled my insurance. The woman on the phone tells me, the person at your job canceled it. I said, I AM THAT F*CKING PERSON! AND I SURE AS HELL DID NOT CANCEL IT! After a few minutes of her frantically calling different departments, she tells me that she is emailing me the forms and that once I sign and date them, they will reinstate my coverage. I will have no lapse in coverage and I will be reimbursed for what I payed out of pocket for my prescription. The pharmacy helped me out and put in some card, so it only came to $24 for a 90 day supply. Not too shabby. But what a major pain in the ass!

I wish I could go back to a much more simple time of running barefoot in the summer and catching fireflies; not having a care in the world. But this has taught me one very valuable lesson—never take things for granted. Even though people may be smiling on the outside, you have no idea the pain they are experiencing inside. Everyone is fighting their own battles. The world needs more kindness AND Medicare for All.

By the way, I had to have my boyfriend tell me how many seconds are in 2 hours. I wasn’t lying when I said I was bad at math.

A Barrel of Coffee

According to ancient lore, 16th century monks trained their companion dogs to serve as rescue animals. They would strap barrels of Brandy around their necks and send them out to find and rescue unlucky travelers gone astray. The survivors would then drink the alcohol to stay warm while waiting to be rescued.

Now you’re probably thinking why would she possibly be thinking this? But as I pulled into the parking lot at work, a panic washed over me. Not only was it my official first day back, but I also had to conquer two flights of stairs with an extra large coffee and a cane in tow. How the hell was I going to do this? Simple, I would take a cue from the monks and somehow fashion a contraption to strap around my neck to hold my coffee. It wasn’t that crazy of an idea! But I’m no MacGyver, so that quickly came and went. And really, who was I kidding?

As luck would have it, there are some pretty amazing people that work in my office building. I have been learning slowly that it is okay to ask for help and I have learned the hard way of what happens when I try to overexert myself or push too hard. I picked up my phone and dialed a friend, or as I like to jokingly call him, Matt, my personal coffee chauffeur. He met me outside grabbed my coffee and off to the stairs we go!

Half way up the first flight of stairs I could feel the heat vents blasting on me. Oh shit, here we go again— f*cking Sahara Desert time. As I have previously wrote about, our landlord turns the heat way down on the weekends to Arctic temperatures, but during the week it is set to a sweltering 74 degrees- which we can’t change. I thought, I am just gonna collapse and camp out here on the steps.

Oh—how a barrel of Brandy would be great right about now.

I finally made it to the top after a few short breaks and a lot of cursing. The heat makes everything worse for me. It literally stops me dead in my tracks. For example, I thought I was going to literally drop to the ground stepping into the bathroom while my boyfriend was in the shower from the steam. So add physical activity to it and I turn to sloth mode. As soon as I got into the office I blasted our stand alone AC unit to a cool 65. I need to get one of those cooling vests or I am going to give someone hypothermia. Luckily for me, my boss likes it cold too.

I haven’t mentioned my boss before, but he definitely deserves a huge shout out for being so supportive and so understanding through this entire ordeal. He was on vacation for my first day back, so he wanted me to be as comfortable as possible and boy he didn’t disappoint! At my desk was an array of healthy snacks, a little case of 5 hour energy shots, diet soda, you name it and it was there. I once again found myself crying at how incredibly grateful I was to have such a wonderful support system. There’s a reason I have worked here for 16 years. Sorry to say people, but I truly do have the best boss a woman could ever ask for. And you if think different, meet me in the parking lot or stair landing, depending on how far I get.

I have been making it from 9:00 am to noon every day. Which is a huge accomplishment for me! After a few hours my brain fog sets in and then the knock you out tiredness visits. I am learning the first signs of this, so that way I can leave before it overtakes me. The last day I pushed too hard and I found myself in my car, in my work parking lot, crying hysterically from exhaustion and pain. Little by little I will work my way up. I know I can do it!

I made it through the week without a barrel of Brandy, but I sure could use a barrel of coffee.

Pass the Guac!

It was the day before my first day back at work. My boyfriend and I decided to do a trial run to my office just to make sure I could handle the drive. As luck would have it, I work only four miles away. I was a little shaky at first, but then I realized—I got this! As we pulled into my work parking lot a wave of accomplishment and happiness washed over me. Who would have thought driving four miles would have such a huge affect on me? But this was one step closer to normalcy.

I soon realized I could no longer park in my “normal spot” which was in the far corner of the parking lot. Hello……..feeling of disappointment, again. I would purposely park far away to get in as many “Fitbit steps” as possible. This was my daily routine for the past two years. Maybe to some this seems silly or trivial, but if you add up all of these “little things” during the day or week, it really becomes depressing and frustrating. It’s a constant reminder of how my life used to be. But as always, I dusted it off and powered to the next hurdle.

Once inside, I faced down two flights of stairs. I never realized how intimidating they could be. This is going to take all damn day, I thought to myself. I made it to the top of the first flight and I felt like I just climbed to the crown of the Statue of Liberty. One more flight to go. It took a bit, but I made it to the top. VICTORY IS MINE! Then I realized that I have to do this Monday through Friday.

My emotions are like a yo-yo.

Accomplishment. Disappointment.

Accomplishment. Disappointment.

Accomplishment. Disappointment

Rinse and repeat.

I turned the key to the office door, walked over to my desk and sat down. I made it. I did it. The good news is that our landlord turns down the heat down REALLY LOW on the weekends, so it was an icebox. Perfect for me, not so much my boyfriend who’s teeth were chattering by the end. I on the other hand, am constantly hot. My body is like a fucking furnace running 24/7.

Now was the true test— Can I perform my job well? How long can I last before I crash from exhaustion? When will the pain strike? When will my hands and arms give out? I was in uncharted territory. I had no idea what to expect. But it was sort of like riding a bike. You never really lose it. I just started doing my normal routine and it felt great to get back into the swing of things.

I won’t lie and say it went seamless. I can’t type yet. I felt like a velociraptor typing with my right hand. My left hand side is the weaker side and the side that decides at awkward times to stop working. BUT, I managed to catch up significantly. Accomplishment! And we are getting the Dragon speaking typing software, so I am feeling very confident this will not hinder my ability to do my job.

All was going swimmingly. Then my old friend, pain, decided to rear its ugly head. I actually broke down crying. I cried loud and hard. I am in Hell, I thought. I felt like some sick cruel joke was being played on me. But thankfully no one was in the building, but my boyfriend and I. It finally passed. By then I was exhausted. My entire body felt weak and just spent. Like a hangover, but on steroids. Then multiply that by 10. Yea….it’s that bad. I made it two hours. I was proud and yet part of me was upset that once again, this was just another painful reminder that I can’t just resume life back to normal. I turned the lights off, locked up, and decided I was going to go for the gusto and make it to the grocery store. I needed everyday items like toilet paper and water. It’s a terrible feeling knowing you can’t just jump in the car and go with this disease. I just never know how I am going to feel day to day. Let alone hour to hour.

It was a mad house! Everyone and their mother was there. I started to panic thinking I will not find a close parking spot. And the thought of walking far makes me want to cry, scream, and yell. All at the same time. But low and behold a close spot was open! SCORE! I once again found myself using the good ole trusty shopping cart as a walker.

I wobble into a wall of avocados. And BAM! It hits me. It’s fucking Super Bowl Sunday! WOW! How did we both totally forget this?! This is just another reminder of how different our lives are now. So we bagged a few avocados, grabbed some chips and salsa and some pre-made goodies and got online. My legs started to feel like Jello and then my right leg and foot went completely numb……..Oh shit. This was my body telling me I am being a stubborn ass again and overdoing it. We paid and got out of there as quickly as possible.

Once home I was so tired that I literally had to crawl up my flight of stairs. I realized quickly that I need to move. Like yesterday. But I felt accomplished. I was able to go into work and I was confident that I can at least do a few hours everyday until I see the doctor, in 4 days, and get on some sort of treatment plan so I can see where I stand. But for now, I’ll take the win.

By they way, I never made it past the first quarter, but it was probably better off considering I am a Giants fan. 😉

Jerky, Empanadas, and a Backpack

Do you remember the old tv show Super Market Sweep? This is the music that was playing in my head as I approached the Quick Check doors.

This was my Atta-Girl moment. I just drove for the first time since leaving the hospital. Sure it was only 2 miles away, but I felt like I was on top of the world. I made it. Things were finally looking up.

Earlier that morning, I had mapped out my plan of attack like a sergeant commanding a platoon. The goal was to get in and get out as quickly and seamless as possible. What could possibly go wrong?

Well for starters it was more crowded than usual, but I had my new cross body purse and was confident that I could maneuver easier this time around. I made my way over to the sandwich order screen. I ordered with confidence and ease. I then maneuvered my way to the coffee bar and not one cane drop or clumsy slip up. Today was going to be a good day.

I get on line and there are 2 customers ahead of me and the line behind me is building up with impatient people. This disease has made me realize how fast people move through life. Literally and figuratively. As corny as it may sound, they don’t stop to smell the flowers or just enjoy life’s simple pleasures. They are too worried about their phones, or how many “likes” they get on social media. We are losing our humanity and fast.

So there I was next in line and I turn around and my neighbor from across the street says, “Hi, is everything okay with you?”—All concerned looking. I take it people have started to notice my car not moving over the past few weeks or the fact that I am not out walking my now deceased dog. I almost lost it right then and there but mustered out— I’mmmm okay. Like a little church mouse peep and turned around to the employee behind the counter 14 feet away yelling at me, “HEY! WHERE HAVE YOU BEEN? WHAT’S WITH THE CANE?!” All animated waving her arms and shit.

Now I basically live at the QC. I am there every morning getting coffee. Sometimes multiple times a day. I often joke I should just get a cot there. So I knew this would happen, but not like what was about to unfold.

I hobble up to the counter and whisper, I was just diagnosed with MS, but I got this! I figure why lie and or try and hide it. This is who I am. I figured that would be it. She would say something along the lines of, I’m sorry and we would move on and never bring it up again. Ever.

Man I was in for a treat.

She proceeds to hold up the line to tell me a story. Very. Loudly. She says she has a friend who was diagnosed with MS and became pregnant. The doctors told her it would be really hard on her body and she should think about aborting the child for health reasons. But being a good Christian woman, this was completely out of the question. She said it was because of physical therapy that she was able to have this child and for me not to worry because her friend had “the worse kind of MS” and as long as I do my physical therapy, all would be well. Like it was some kind of fucking magic pill that would make this all go away.

Crickets….. the entire place was quiet. I turned around and everyone was staring at me. I felt a wave of panic wash over me and my legs become jello. I know this feeling well. In retrospect, I should have just finished paying, took a bow and walked out with confidence. But….. I am not quite there yet. Nor am I used to the unwanted attention.

This is where my hero, my partner in crime, and my rock saved me from a mental and physical breakdown right then and there next to the jerky and empanadas.

He calmly says, why don’t you go out to the car. I got this. In my head it was more like——-GET TO THE CHOPPER!!

I quickly hobbled out of the store. Got into my car. Put on my brand new Jackie O sunglasses and balled my eyes out in the parking lot. Was it always going to be like this? When can I go back to living my life before this atrocious disease decided to ravage my body?

When he finally came out with my sandwich, coffee and other odds and ends in tow he said, fuck them. This will get a hell of a lot easier. We will get through this together and I will be here helping you every single step of the way. You will never be alone. People just don’t know what to say in these situations. People are stupid. This will get so much easier with time. He is the guy who says to me when I ask him would he still be with me if I lost my arms and legs——sure, I will just shove you in a backpack and strap you to my back. He just gets me and for that, I am extremely grateful.

He has laid next to me while I was wrenching in pain and was feeling like I was never going to return to the light or any type of normalcy. Just letting me know that he was there and that’s all anyone really needs in life. Someone to love them, even during their darkest hours.

He may not be fighting the same battle as me, but it is still emotionally and physically taking a toll on him. Even though, he would go to his grave denying this. I know it’s true and I totally get it.

Boyfriends, girlfriends, husbands, wives, and life partners are the unseen heroes. They are the ones that deal with the emotional end result. They see you at your lowest darkest moments all while remaining strong in the face of uncertainty and pain. I wish more people would start asking the spouses or partners if they need help. Sometimes, they too, just need a helping hand.

It will get easier. He is right. Because I have the most amazing support team a woman could ever ask for. Or as I like to call them, the Mutha Fuckin MS Warrior Squad.

This photo was taken 5 weeks before my diagnosis. All it takes is one spilt second for your life to be changed forever. Stop and smell the flowers.

Trust me, it’s worth it.

Can you put in a store card for me?

I want to be brutally honest about my recovery and progress.

This past week home from the hospital has been life changing to say the least. New symptoms or hidden ones have suddenly emerged and the uncertainty of not knowing if you will fully recover is frightening. Not being pumped with an IV of steroids two times a day has shown me just how bad this disease can be left untreated.

I spend my days sleeping and medicating myself so I don’t become crippled with pain. For the first time I have felt this strong urge to write. My creative juices have been flowing like crazy. I haven’t felt this way since I was a child. I sleep in short increments. I wake up every night around 2:00 am with terrible pain. It feels like someone is taking a cigar cuter to the nerves in my legs and back. I couldn’t take it anymore so I decided I would take my mind off of it and give writing a book or blogging a shot. I mean, why not? A few minutes in and I started to realize how therapeutic it was for me. This is great, I thought! Finally a way I can take my mind off of this unbearable pain.

But this came to an abrupt end. I was about five paragraphs in and my hands just stopped working. They became rubber. I can’t really explain the feeling other than restless leg syndrome, but in your hands. I still haven’t recovered fully from it and I can’t really hold anything for a long period of time without needing a break. Thank you science for microphone messaging. Seriously. It’s been my only sanity lately.

Wednesday was the first time I was able to get out of the house to the grocery store and the Quick Check. First stop was QC, where I learned how hard it is to carry a purse and a cane in bad weather. I dropped the cane at least four times and I had to have my dearest friend Patricia get it for me- every time. I think the most crushing part was not being able to just grab myself a fucking cup of coffee without being clumsy or people staring at me. You see the looks. You feel like you just don’t belong. It feels like your body is having this internal war and no one can really understand it until they have experienced it themselves.

Next up the grocery store. It already feels like I ran two marathon’s. That really took it out of me. Shit, was it always going to be like this? I was determined to make it through the grocery store. I used the cart to hold myself up and to help me walk properly. I learned that after only five minutes of walking, my legs start to feel like Jello. I felt like I was just waiting to fall. The pain started to pick up and then the sweats started happening. Like crazy hot flashes. I fucking felt like I was in the Sahara Desert and I just wanted the rip my clothing off and sit in the middle of the grocery store aisle. I thought about it for a brief moment.

Doing normal things like reaching for cat food becomes this huge task. I wanted to break down in the store at least 5 times and just cry, but I had to remain strong. I keep whispering this to myself as I hobbled around the store. My arms started to burn from trying to hold myself up.

I kept telling myself—Who the fuck am I to get so upset? Some people can’t even go to the grocery store, let alone walk. Thank the lucky stars I have my friend who has been one of my rocks through all of this, just treating me normal and making me laugh through it all. Because at the end of the day, that’s all that matters in life.

This is all new to me and I am still learning about this disease and the effects it has on my body. I finally have a doctors appointment with an MS specialist next Friday. I am hoping with a new daily treatment and pain plan, I can resume life somewhat back to normal. I feel like I need to be extremely honest with my recovery, and in hope that it will help people better understand what I am going through and maybe, just maybe, it will help someone else who is just as frightened as I am.

For anyone who is on the fence about the benefits of cannabis oil—if it wasn’t for this, I would be in crippling pain. It is the only thing that is making my life bearable these past few days. The thought of anyone having to deal with the pain of this disease without it, kills me. It literally rips my heart out. No one should have to live through any type of pain. Ever.

As always, I am a Mutha Fuckin Warrior and this soon will pass!

Thank you all for your support.