Do You Believe In Magic?

Multiple semi precious gemstones on board

Do you believe in magic? I never have. It’s hard to believe when you live with a chronic medical condition.

I went to a summer camp for 11 years when I was a kid and there was a magician who came to visit every summer. My first summer he made a playing card stick to the ceiling of our Rec Hall. It stayed there for all 11 summers. I bet its still there to this day. Every summer I would check to see if it was still there, and even when I’ve been back for reunions. Not because I’m in awe of his magic, but because I’m skeptically trying to figure out what the trick is that’s keeping it stuck up there or whose job it is to reapply it before each summer.

I’ve recently gotten to the point where I’m willing to try anything and everything under the sun to feel better. I’ve turned to alternative therapies in the past, but I admit I didn’t give them a fair chance. Lately I’ve been adding in a lot more supplemental yoga, physical therapy and meditation to my routine which I’m finding helpful to what I’m already doing. I’ve heard of crystals and their healing abilities before and I’ve been intrigued but also skeptical because after all, can a rock really possess the power to heal? Or is it just a scheme that celebrities buy into because they need something to make them feel connected to the Earth so they can claim that they’re “grounded”?

I was in Upstate New York recently for a friend’s birthday and while I was there we came across this really cute store that was selling crystals. The store owner was talking about what each of them do. They were really pretty and I thought I could use something like that in my life, but I just wasn’t sold on the legitimacy of it all. Plus, it seemed expensive for a rock. But after we left I couldn’t stop thinking about that store and its crystals, which is usually how I determine if something is worth buying. Unfortunately, we weren’t going back to that area for the rest of the weekend.

Then this past week I got an email from a yoga studio I went to once inviting me to an event they were having called “CRYSTAL JOURNEYING WORKSHOP + REIKI CIRCLE”. It felt like a sign. In the description they were going to teach you all about crystals, their meaning, how to tell the real ones from the fake, how to use, clean and store your crystals, they were giving away a free crystal gift and then there would be a reiki circle at the end. I wasn’t too sure about the reiki circle but I felt like I needed to be at this workshop in order to get all of my questions answered.

I asked my sister and a friend to go with me but neither could make it. I was nervous to go alone but decided to be brave and do this for myself. There were only 5 people that attended the workshop which allowed for each of us to get a lot of personal attention. I went in there really curious and with an open mind. I learned a lot. Everyone there was so kind and friendly. I felt comfortable opening up about why I was there and asking any questions I had.

We did a crystal meditation with the clear crystal that was gifted to us and during the meditation I could feel its energy. It may sound unbelievable to some but the crystal which is naturally cold turned extremely hot in my hand and I saw visions during my mediation that have some very personal meanings to me.

We ended the workshop with the woman who led it performing reiki on each of us. I was nervous about this part only because I had reiki done to me once and I didn’t feel anything. If you don’t know what reiki is its a type of massage but the person performing it never touches you, they use energy and go over each of your 7 chakras to open up any blockages. I had a mask over my eyes so I could never tell where she was except for the fact that I could tell when she was over my crown chakra, or my head, because it was tingling. It felt like intense pins and needles. And then when she was at my throat chakra I felt pressure in my throat and then the same thing happened with my chest, which is the heart chakra. I didn’t feel any other sensations anywhere else but I saw Chip, my dog who passed away 3 years ago. I’m aware it sounds crazy but I believe he was coming to say hello after she opened up my crown chakra.

I entered the workshop with a migraine and left feeling amazing. I did, however, wake up with a migraine again the next morning. I’m not saying I’m going to forego my medication and only do crystal meditation and reiki from now on but I think supplementing the Western medicine with the Eastern can’t hurt. Egyptians and lots of cultures have been using gems and stones for thousands of years so if its good enough for them, why not me?

I think everyone should do whatever makes them feel good because at the end of the day that’s what matters — getting to a place where you feel well, even if its just for a few minutes. I bought a few different crystals since — amethyst, fluorite and blue citrine are particularly good for what I need right now — and I set my intentions and have them around my room and plan to use them as I see fit. I currently have a lot of doctor appointments and don’t know if I can fit reiki into my schedule at the moment but the yoga studio did say they plan to have reiki circle events coming up so I will definitely plan to attend those.

These are all words I never thought would be coming out of my mouth but I guess a skeptic with a chronic migraine condition can believe in magic after all.

That’s What This Is.

Butterflies In Stomach Icon

When I got to college and made new friends suddenly everyone was talking about this thing called anxiety. It seemed like everyone around me was anxious. I didn’t really understand what they were talking about. I was convinced that everyone else was crazy and I must be the only normal one.

I always had some social anxieties growing up. In school, I never wanted to be noticed by teachers so I sat in the back of the classroom and tried my best not to be called on – even when I knew the answer. I dreaded public speaking and any presentation where all eyes were on me. One year there was a standardized test that included writing an essay and then reading it aloud. I remember the day of being frozen at the bus stop, crying because I was so nervous. My dad drove by on his way to work and asked me what was wrong. He had to talk me down and ended up driving me to school that day because I refused to get on the bus. But those all seemed like “normal” things to me that most people feared.

It got worse as I got older. At work functions I don’t always feel comfortable because I worry about who I’m going to talk to. I definitely am not the most outgoing unless I’m comfortable in my surroundings and I still dread public speaking, however, I still just think of that as my personality, nothing out of the ordinary.

But lately I have been experiencing a new type of feeling that finally made me go – OH. THAT’S WHAT THEY WERE TALKING ABOUT. THAT’S WHAT THIS IS.

Suddenly I can confidently say I am one of the crazy ones too. I have been experiencing debilitating anxiety. And it is not okay.

I have a constant pit in my stomach where I feel like I am on Steel Force at Dorney Park — which used to be my favorite place in the world — except we just keep dropping down and never get off of the roller coaster. I used to be the chill girl, I’ve even been told that I’m ‘zen’. It’s pretty ironic – considering lately I feel this constant sense of impending doom and cannot fall asleep at night because of it.

Sometimes I burst into tears uncontrollably and I can’t explain my emotions. My hair has started thinning and I’m getting acne where I used to always have ‘perfect skin’. I can’t eat – I’ve called out of work before because I just couldn’t face the day and dreaded getting out of bed. The worst part is I know it affects my head and causes my migraines to worsen, which is the last thing in the world I would want, but I can’t calm down and don’t know how to soothe myself.

I finally was prescribed medication from a doctor after opening up about how I was feeling to my therapist, but its addictive and I’m already on so many medications as it is. I would love to be able to not always rely on a pill to solve all of my problems. I want to be able to cope on my own.

At every appointment since I can remember doctors have always asked me if I suffer from depression and anxiety. I have always answered no. Lately, I can’t fight the feeling that I am suffocating. That I am drowning in a big empty pool that is my life. Next time I’m at the doctor I’ll have a different answer. Because that’s what this is.

Update: Painful Few Months

I have to apologize for my recent hiatus but the past few months have taken quite the turn that I was not prepared for. Since switching neurologists and therefore adjusting my medications and treatments, I have been in a state of constant pain for almost three months. I have been seeing different specialists almost every day and am working towards getting answers but I have been waking up with migraines every. single. day. I knew the changes that I was making were going to affect me and as a chronic pain warrior who holds a full-time job I thought I had been through it all but I have to admit I have really been going through it. I don’t know if there was any way I could have prepared for the way I have been feeling these past few months.

I am not one that likes to admit weakness. I’m used to being able to smile through pain. I’ve had about 20 years of practice. I always answer, ‘How Are You?’ with ‘Good,’ and ‘Great.’ Lately, my answers have been more along the lines of, ‘Fine,’ ‘OK,’ and ‘Alright’. Still not honest, but a little less cheerful. I always thought the ability to hide my pain and live these two separate lives where no one really knew how much pain I was in was a talent, but now I’m convinced its a detriment. I struggle with not wanting to be a downer or a burden on anyone, but at the same time its a lonely place not being truly understood. It gets overwhelming having to deal with everything that comes with a chronic illness on your own.

After living for so long one way, and being so damn convincing, how do you all of a sudden learn to ask for help? Does anyone else ever feel this way or am I the only one?

A New Approach

 

Medicine pills

Yesterday not only marked a new month but also a new beginning for me in how I approach my treatment.

I had my new patient appointment with Dr. Colman and it was exciting but also scary. I worried that I may have put too much emphasis on this appointment and didn’t want to be let down. However, Dr. Colman and her team did not disappoint.

They spent over 2 hours with me going over my history, every concern and issue I have or have ever had and they made me feel so safe and comfortable and NORMAL. I didn’t feel rushed, like they needed to get to their next appointment. I never felt like any of my concerns were being minimized or anything that I had been through made me a freak or a medical marvel.

When it came time to discuss treatment going forward, everything was explained to me in a way that was easy to understand even if it was hard for me to swallow. In the past when I spoke about how nothing was working and my migraines were still so bad,  I was just prescribed more medication, had my doses adjusted and was sent on my way. I was in and out of the office in 15 minutes or less. If I had a migraine that lasted more than 4 days and I needed the cycle to be broken, I was told I could go to the emergency room for a DHE infusion, but first I had to get approval from my insurance so I’d have to wait 3-4 days for that. It literally made no sense. And the ER is absolute Hell for anyone going through a migraine.

Yesterday I was told that I’m too reliant on my medication. As someone who has had a stomach ulcer rupture due to NSAID overuse, I would agree. I’ll be the first one to say I never want to end up in that situation again, but I also need to be able to function on some level and my medicine allows me to do that on most days. But then I got schooled on rebound headaches. I’ve heard about them before but I never paid them too much attention, because I deal with migraines. Chronic ones. I was always in the mindset of, I can’t concern myself with the likes of mere ‘rebound headaches’. I’ve got bigger things I’m dealing with.

However, Dr. Colman and her team disagrees. Because of all the medication I take and all of the combinations of triptan cocktails I mix together when I’m in a pinch, I am hurting myself more than I realize. On top of all my preventative medication, I’m using triptans almost every day and I also end up using extra strength tylenol most days too. I am currently prescribed three different brands of triptan and use them at my own discretion depending on my mood, intensity of migraine, etc. At yesterday’s appointment, like Sophie’s choice, I was allowed to pick only one to continue using. I can use it just 3 times a week. No more than that. If I need to use something else, they prescribed me a muscle relaxer that can be used more frequently.  I’ve been instructed to start with only half of a dose before bed when needed.

If I need to use a triptan more than three times in a week I can reach out to Dr. Colman via email and either her or one of her fellows will get back to me about other ways to help me. Those can include prescribing a steroid, another prescription, coming into the office for a nerve block or possibly seeing the nurse practitioner for an IV infusion. All of these including the muscle relaxer are options I have never been offered before.

We also spoke about so much more than medication. I went for lab work, which I haven’t been asked to do in such a long time. I am still awaiting results. We spoke about my mood, anxiety, how it affects migraine and the vicious cycle of cause and effect. As a result, we discussed methods of coping including therapy, meditation, exercise and more. We spoke about my sleep habits (or lack therof) and some big changes I need to make to combat the insomnia I struggle with. She brought to my attention the fact that I have an increased risk of stroke since I experience migraine with aura and the brand of birth control pill that I am on increases that risk further.

This appointment was eye-opening for me. Not only in how many more doctor appointments I need to make immediately, but how doctors in the same field treat patients so differently. Don’t settle for a doctor who may not be giving you the best treatment, just because supposedly they are the “best” in their field. I always try and steer clear of dwelling on the past. No sense in harping on what I can’t change so I ‘m not going to sit here and think about what could have been during the 7ish years I was under my previous doctors’ care, but I’m grateful to now be under Dr. Colman’s.

Though this new way of treatment is overwhelming and letting go of all of 2/3 of my triptans is going to be difficult, I’m ready to embrace this new approach because while I know it may get worse before it gets better, as with anything that is hard I have a feeling it’ll be worth it.

 

The Waiting Game

Waiting Room

You know the old adage, ‘You want what you can’t have?’ The idea that something or someone is so unattainable makes it that much more desirable. It’s the first thing they teach in Business 101: supply and demand. When I was little, I remember needing the hottest toy on the market, a Furby. I put it at the top of my Hanukkah list and hoped to see it on the table of presents where we gathered to open one per night. Everyone who was anyone at my elementary school was getting one and I just had to be among those select few. Of course, after the grueling tradition of opening one present per night, by night eight I was met with disappointment when my last present was not the highly-coveted Furby.

Looking back, I don’t blame my parents. They knew better than to wait in line on Black Friday just to be ran over by another set of parents willing to fight over the last Furby left on the shelf.

Every year, there is a new “it” toy and every holiday season there are videos of parents racing each other and fighting for a chance to nab the last one off the shelves. And if you want to try your luck at home on the internet, that’ll set you back at least a few thousand dollars.

As I’ve gotten older — and I’d like to think a bit wiser — my tastes and priorities have shifted, but some things haven’t changed. There some things that I am willing to jump through hoops for, some things that I believe are worth it. It may not be a material item and I may not be putting it on my Hanukkah list but for the past year I have been working relentlessly to score a doctor appointment with neurologist, Dr. Rachel Colman.

Dr. Colman is the one who I have been seeing to administer my Botox injections. At the same time I was looking for someone to give me my injections, I was looking to switch neurologists because Dr. Green, who I had been seeing up until this point doesn’t accept insurance. After more than doubling his prices, I could no longer afford to see him anymore and begged him to refer me to someone that he trusts and believed that would be a good fit for me. Finding a good neurologist is a daunting task when you are a chronic migraine sufferer and I thought I had finally trained Dr. Green to treat me how I needed to be treated after 6+ years. Unfortunately, not well enough since he wouldn’t give me a break in price. For some reason, just because I can get an appointment with Dr. Colman to administer Botox, that did not mean I could get an appointment with her to be a new patient. She was playing hard to get. She not only had a waiting list, but she had a waiting list to be on her waiting list.

The normal human being may have let that deter them. But I am no ordinary citizen. I have seen my fair share of doctors throughout the years and I am aware of how they operate. No pun intended. I know how rare it is to find a good one. Dr. Colman works closely with Dr. Green and comes highly recommended from him. She also accepts my insurance. Those are 2 qualities in a doctor that are extremely important when looking for someone you plan to see every three months for the unforeseeable future. What further sealed the deal for me was meeting Dr. Colman. When I saw Dr. Colman face-to-face for my first Botox appointment, she was a kind, comforting, intelligent and calming force that I immediately felt a connection to. I knew I had to be this woman’s patient no matter what it took.

I was hearing her tell me her schedule was way too full at the moment and it wouldn’t be fair to her current patients for her to take on new ones, but all I could think about was how I was going to find a way to make it into her lineup no matter the consequences.

The very next day I started calling her office and asking to be put on the waiting list for the waiting list. And I continued to call daily, weekly, monthly. Sometimes the receptionist on the other end of the phone appeased me and simply said the status was the same and I was on the list. Sometimes they acted like they had no idea what I was talking about. And yet, I was still as determined as ever.

At my second Botox appointment, I brought up the waiting list to Dr. Colman again and she gave me the same schpiel about how busy she still was. But this time she gave me the name of her personal secretary and told me she was in the office that day. I don’t know if she knew what she had just done, but I made it my mission to find Bethlehem’s desk before I left the office that day and I proceeded to give her all of my information and in return I took down all of hers. Two weeks later, I was informed I made it from the pre-waiting list to the waiting list. I nearly fainted after I got off that phone call. I still had a ways to go but I felt like my year-long campaign had finally worn someone down and I had made progress.

Then a few weeks ago I got the best call ever. The one that makes all of my hard work and dedication worth it. Someone canceled and an opening became available and I now have an appointment scheduled with Dr. Colman for TOMORROW, March 1st! A fresh start to a great month, full of possibilities. I had to take off work for the appointment because it’s in the middle of the day but I don’t even care. I am getting my foot in the door and now I’m going to officially be a patient of hers. Every appointment I make with her from now on can be made conveniently and without a serious wait time. I finally did it. After almost a year of phone calls, emails, tracking secretaries down, nagging, begging and tears shed I can finally say I scored an appointment with Dr. Rachel Colman. The only waiting that is left will be in the waiting room.

I did it. I got my Furby. Happy Hanukkah to me.

New Year, Same Pain?

Girls jump to the New Year 2018

My second round of Botox injections are tomorrow, January 2nd, 2018. It’s a new year with a fresh slate… if you believe in that sort of thing. I have to admit that when the clock struck midnight on New Year’s last night and everyone was either kissing, sipping on bubbly or blowing on their noisemakers I was experiencing a migraine. Same old pain that has followed me from about age 13 was joining me into the new year. In that moment I wasn’t feeling the festive spirit that New Year’s is supposed to bring — a clean slate, new beginnings and a hope for the endless possibilities that await you in the year to come. Instead I was mad. I was angry, I was sad and most of all I was in pain.

However, today is a new day. And I’m trying with all of my might to fight my inner pessimistic migrainiac and to look at tomorrow as my own personal New Year’s. After my first round of Botox injections, I had two really great weeks where I felt clear-headed in a way that is hard to explain but it’s something that I know I haven’t felt in a really long time. Even though the feeling didn’t last, the fact that I was able to feel like that is a huge accomplishment in and of itself and makes me feel like maybe with each round of injections I could hold onto that feeling for a bit longer. I know that is the goal of this whole process and while I still am going to keep my expectations low, my hopes remain high.

And so with that being said, I am not accepting this feeling of post-migraine misery that I have been feeling all day. I will no longer allow myself to have a self-pity party even though I know that’s easier said than done.

In the Jewish religion, 18 is a spiritual number. The letters of chai, meaning life, add up to 18 and many Jewish people believe that 18 is the luckiest number and a good omen for life.  So I refuse to believe that 2018 is going to end the way that it began for me.

I’m hoping that by speaking all of this into existence it will come to be that starting tomorrow my slate will be cleaned with each injection as if is it a sip of Dom Pérignon and tomorrow evening I will be ready to conquer 2018 and all that is has in store for me.

The Naughty List

Santa Claus reading a wish list at home.

Whether you are ready or not, December is here and that means the holidays are right around the corner. This time of year always gives me reason to reflect on myself — what I am proud of and more importantly what I can do better. What is important to remember is that it’s OK to be human and that we all are constant works in progress. Especially those of us with chronic conditions — while we are fighting against an invisible illness everyday there are always going to be things we wish we could have done better along the way.

In that spirit, below are my list of confessions. If Santa were to judge, I’m afraid I’d be on the Naughty List this year. My hope is that through this honest reflection I can open up a conversation, make others feel less alone, and ultimately I will use it to hold myself accountable so in the future I can do better. And maybe next year I can aim to be on the Nice List.

  1. I still hide the fact that I have a chronic migraine condition from many people in my life
  2. During a period of bad attacks, I sometimes end up isolated for days without speaking to anyone and in turn feel very alone and like a waste of space
  3. Even after all these years, sometimes I forget to pack my medications with me in my purse, or on vacations and overnight trips
  4. In fear of the hospital, disdain for their bills and in an effort to avoid long waits and extra frustration, I never go to the ER anymore even when I think it may help, because I am that stubborn and afraid
  5. Even though I know it’s important, I struggle sticking to a regimented sleep schedule and suffer from bouts of insomnia
  6. Sometimes I don’t take my abortive medications right when I feel an attack coming on and I don’t really know why
  7. Sometimes I hide and sneak my abortives in public as if they are something to be ashamed of
  8. Sometimes I worry my friends and family don’t even believe my condition or think I am exaggerating
  9. A lot of the time I fake being well because I don’t want to disappoint those around me
  10. Sometimes I don’t tell my family when I have a migraine but I expect them to know that I do
  11. Sometimes I get depressed or frustrated with my condition and take my anger out on the ones that are closest to me and that I love the most
  12. Sometimes the guilt I feel from my condition overwhelms me
  13. I don’t like to talk about my condition too much because I think I will annoy those around me
  14. Sometimes I think there’s no point in discussing my condition because they can’t possibly understand
  15. Sometimes I worry that all my talk about migraine irritates people.
  16. Even though I am on dietary restrictions because of my condition, sometimes I cheat
  17. Sometimes I push myself and take risks I know could very well trigger an attack because I want to live normally and keep up with my friends and family
  18. I suffer from a severe case of FOMO
  19. I still hesitate to ask other people to accommodate my triggers because I don’t want to inconvenience them
  20. Sometimes it makes me angry that those who are close to me still don’t accommodate me by keeping  their voices down or lowering the lights when I’m having an attack
  21. Sometimes I get impatient with others’ complaints about their medical issues
  22. When other people talk about getting a migraine sometimes I question if they really had a migraine or just a headache

Worst Things To Say To A Migrainiac… EVER.

Woman and Woman Speech Bubbles

10. Did you take your meds?

Whenever I tell someone that I have a migraine 9 times out of 10 their first reaction is to ask if I took anything. To be honest, I have even caught myself asking someone the same thing when they told me they have a headache. The problem, though, is that headaches and migraines are different. Maybe its just an automatic reaction and people don’t know what else to say or how to respond. But as someone who suffers from chronic migraines I can attest that the second I feel a migraine coming on the first thing I do is reach for the drugs. So asking me if I took my meds is kind of like asking if the sky is blue. It’s insulting and annoying AF.

9. Drink Water. You’re Just Dehydrated.

I admit that water does have great health benefits and I’m a believer that its always important to stay hydrated whether you are a migraineur or not. Dehydration is definitely a trigger for some people, but once a migraine strikes chugging massive amounts of water isn’t going to make it magically disappear.  Trust me, if it could I’d most definitely be using that method instead of pumping my body with medication. If water could cure migraines I️ think doctors would have stopped searching for a cure decades ago.

8. You Need To Exercise More.

   All migraineurs are not created equally. Everyone has different triggers and symptoms, however, there are definitely things most migraine sufferers can agree on. For me, if exercise had a Facebook account our relationship would be listed as ‘Complicated’. I love to stay active for not only my body but for my mental health and I truly believe that when I am consistently working I feel better overall. However, my workouts are severely limited because anything that remotely resembles high-intensity tends to trigger a nuclear war in my head and sends me into a days-long head-pounding bender. I mainly stick to workouts like pilates, yoga, barre classes and long walks in the park but some days even that is too much for me. When I am going through a tough period, most days I’m happy to get out of bed let alone keep up my low-intensity workout schedule. Once I get thrown off my routine, it can take me weeks or even months for me to get back into it. It’s a complete catch-22 that I am constantly trying to balance. So next time you think exercise and meditation can fix any situation, think twice before you nama-say the wrong thing. 

7. Don’t stress over it. You’re just making it worse.

Of course stress is a good breeding ground for migraines but telling me not to stress over something just makes me more stressed out and angry and therefore negates the whole purpose of your sentiment. It’s like when you tell someone to calm down. It just gets them more angry. So don’t do it. Because now you’re the one making it worse.

6. C’mon. You can push through it.

Most migraineurs end up learning how to push through their pain and sugarcoat their chronic struggles to make others more comfortable. They learn to live with pain everyday because they have no other choice. They are forced to deal with discomfort on a scale that no one should have to learn how to function with. So when a migraineur gets to the point where they speak up and can’t take it anymore, what they need is someone to be understanding and to tell them it’s okay.

5. Have you tried this…?

The answer is probably always most definitely yes. As someone who has been suffering from this disease for over 16 years now, I can confidently say I have tried almost everything out there or looked into every option and if there is some new treatment or medication waiting on FDA approval I probably know about it and am waiting with baited breath for it to get approved so that I can try it.

4. It’s just a headache. It can’t hurt that bad.

No actually. It’s not just a headache. And it’s thinking like this that gives people like me a reason to not want to talk to anyone about my condition. This is why I think it’s not worth explaining to people what I deal with, because of the stigma that comes with the word migraine.

3. Are you feeling better yet?

A migraine can last anywhere from 3 hours up to 4 days or even longer. I want to be able to attend plans with my friends and spend time with my family as much as they want me there but the added pressure to feel better makes me feel worse than I already do that I am missing out.

2. You don’t look sick.

Migraine is an invisible disease. It’s one of the reasons it has such a bad stigma associated with it. So while I do enjoy a good compliment every now and then, just because I may look well on the outside doesn’t mean that I don’t feel like a team of masons are laying bricks on top of my head one by one until my eyes will inevitably pop out of their sockets.

1. It’s all in your head.

I really, really wish this were true. Unlike those who use “I have a migraine” as just an excuse when they call out sick from work, keeping the stigma alive, when I do it its the real deal. I’m not playing hooky. I’d actually rather be at work. Instead I’m laying in my bed in silence… with the blinds drawn, lights out, cold compress on my head, hoping for a miracle and wishing it really was all in my head.

 

10 Ways You Can Tell You’re A Chronic Migrainiac

Unhappy woman's form double exposed with paint splatter effect

10. You Give Zero Fucks

Before I ever experienced my first migraine I had a lot of different priorities. I worried about the same things many other 12-year-old girls cared about. Will the cool girls invite me into their clique? Does my crush think I’m cute? Can I talk my mom into buying me the newest Juicy Couture sweatsuit? What are the Spice Girls doing right now? Will my chest always be flat? While my love for the Spice Girls has not wavered — I am currently coveting the Victoria Beckham collection and am seriously concerned for the well-being of Mel B. — I can guarantee you post-migraine condition my priorities have shifted in a major way. I no longer care what people think of me. I try to take advantage of the few good days I get by living my best life the only way I know how and the only person that can define what that is, is me.

9. You Wear Sunglasses Indoors & You Are Not Anna Wintour

Anna Wintour is a badass. She  rocks sunglasses whether she is inside or outside and she rocks them like the boss lady she is. Some people may find it offensive when they see regular people wearing sunglasses indoors. They assume anyone who’s wearing them must think they are just too cool. Some people might be right. But light sensitivity is one of the most common side effects of migraine. When I’m having a migraine attack, the smallest sliver of light can feel like I’m camped out on the sun. A dark room may even feel too bright. The brightness levels on my phone and iPad screens are always set on the lowest possible setting and that’s not even enough to lessen the feeling that a tiny person is taking an ice pick and chipping away at my eyeball when I look at it. So next time you see someone wearing their sunglasses indoors, they may not just be making a fashion statement.

8. The Font On Your Phone Is The Same Size As Your Great-Grandmother’s

I can’t tell you how many times I’ve been asked about the font on my phone. I have 20/20 vision and yet the type-face on my screen makes it look like I am legally blind. I set up my phone this way on purpose. To avoid eye strain, and for the nosy people on the subway who would have trouble reading my texts over my shoulder otherwise… you’re welcome.

7. You Are A Walking WebMD

It was a while after I started getting migraines before I was officially diagnosed with chronic migraine disorder. When I first started experiencing excruciating head pain I wasn’t sure what was going on and I visited a number of different doctors and had lots of tests and scans done. It was scary. There was a lot of trial and error as I was prescribed different medications, and doctors used lots of terms I didn’t understand. I quickly learned the importance of research. Now before I take any medication I look it up and research the side effects, I read reviews and I make sure I know what I’m putting in my body. Before I see a doctor I look them up, I read reviews and I make sure I know who I’m entrusting with my care. When a doctor mentions a possible diagnosis I look it up, I familiarize myself with it and I learn what it means. I get second, sometimes third opinions. I receive newsletters from foundations and organizations that keep me up to date on the latest news and discoveries in migraine research so that I’m informed and can ask about certain treatments and findings with my doctors. No one is going to care more about your health and wellness other than you so it’s important to be proactive and stay informed when it comes to your health care.

6. Your Primary Physician Is Your Neurologist

I literally put down my neurologist as my primary care doctor when I fill out forms. What, like that’s weird?

5. You Have A Small Inner Circle

When your schedule is filled with more doctor appointments than social outings, you learn quickly who your friends are. When I was in high school I missed a lot of days because of my migraines and my once always-smiling, hyper self was replaced by a moodier, quieter, resting bitch face. I couldn’t wait to escape those halls and I almost didn’t because of the amount of days I had to miss. I had to bail on a lot of plans, but that’s okay because it taught me who my real friends were. I still have to cancel plans occasionally but because of the group I have surrounded myself with the only sense of guilt I ever feel is mainly my own. I know I’m not easy to be around or deal with when I am having an attack (or even on the days leading up to one or afterwards), but that is something I am constantly striving to improve upon. I’ve been through a lot more in my short lifetime than anyone should have to deal with and because of that sometimes I’m more reserved and slow to open up to new people, because those who don’t understand can be judgmental and honestly I don’t have time for that.

4. You Fake It Til You Make It

When your months are filled with more pain days than good days, you learn to cope and power through. I think I’m pretty good at faking it. Sometimes too good. After you realize how much you hurt the people around you when you can’t say the right thing, or when its time to adult and you can’t miss a day of work, you learn to compartmentalize and put on the act that you are well. The fact that this disease is an invisible one can sometimes lead to the stigma that you actually are faking the illness and not the fact that you are well. But make no mistake, its the wellness that’s being faked. The second that I’m able to I’m collapsing onto my bed, and shutting out the world until the next time I need to come out of my shell.

3. You Are A Professional Napper

If there was an Olympic sport in napping I would probably take home the gold. I have always struggled with some form of insomnia and I also have restless leg syndrome so it always takes me a really long time to fall asleep. Once when I was spending the weekend with friends, I got the nickname ‘Flounder’ because of the way I was flopping around in the bed unable to get comfortable. Lately, 5-10 mg of melatonin has been helping me before bed. Most of the time though, I am still exhausted when I wake up and I never feel fully rested. All of my medications list “fatigue” as a side effect. Napping is a great way to fight fatigue. In my opinion,  a nap is always a good idea.

2. You Run a Portable Pharmacy

I have learned the hard way to never be caught without medication on hand. In order to out-smart myself, I have strategically placed triptans and acetaminophen in every purse, bag, pouch, wallet, etc. that I own so that I never get stuck in a situation where I am without medication when a migraine strikes.

1. You Are A Warrior

I have been through hell and back but I’m still here. I’m fighting everyday against an invisible, misunderstood, debilitating disease along with 2-3 million others in the U.S. alone. Though I have to admit it has crossed my mind, giving up is not an option. Knowing you are not alone helps. Anyone who suffers from chronic pain is a fellow warrior and deserves credit for continuing to fight everyday.

Expectations Low, Hopes High

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It’s been a little over 24 hours since my first Botox for migraine treatment and though physically I am slightly bruised, mentally I am stronger than ever.

It didn’t start out that way though. Yesterday my morning began full of nerves and of course, a migraine. All the research in the world couldn’t keep my anxiety at bay. I didn’t want to take any triptans before my appointment though because I wasn’t sure what the protocol was, so I just brought some with me in case and decided to ask once I got there. Later the doctor advised me to take them before the appointment began since I wouldn’t start feeling the effects of the Botox right away.

My mom accompanied me to my appointment and even though I am now 29 1/2 and have been attending most doctor appointments on my own for quite some time now, I can’t tell you how grateful I was to have her there. As any migraneurs can attest, oftentimes you are not the only victims of your disease. Your family members and close friends become targets as well and my mom has been on this journey with me from the beginning. My reasons for wanting her there were twofold. First, I wanted her there as a second witness to listen to all instructions and explanations from the doctor in case I forgot anything. Second, I wanted her there because she has been my biggest advocate when I was incapable of being my own. I think its safe to say she has been looking forward to this day almost as much as I have.

Now for a little background info, my neurologist that I have been seeing for the past 7 years is named Dr. Green. Dr. Green does not accept insurance and up until recently charged $275 per appointment. I used to believe the cost was worth it in order to ensure that I get the best care, as Dr. Green is a critically-acclaimed expert in his field. But he recently raised his rates to $525 and although I do get reimbursed for some of my out-of-pocket costs when I submit my receipts to insurance, its just gotten to the point where its simply too much for me to afford. For that reason, I am currently in the process of trying to see one of his fellows, who do accept insurance, for my primary neurology care. Dr. Green works closely with his fellows and recommends them so I trust that I will be in good care. Plus, I watch Grey’s Anatomy and so I feel fairly confident enough to say that I know the difference between a fellow and an intern and I know a fellow has been in the game long enough to know what they’re talking about.

So that’s why when I won the battle to have this Botox treatment approved by my insurance, I decided to have Dr. Coleman, a fellow of Dr. Green’s, administer the injections. Because if Dr. Green were to administer the Botox it would be charted as an appointment with him and I would be charged the $525 rate by his office. Unbelievable.

When my name was called in the waiting room at Mt. Sinai yesterday my mom and I were met by a young Dr. Pace and another pain fellow whose name I did not catch. I was a little surprised not to be shaking the hand of Dr. Coleman, but I assumed these two were just going to get me settled into the room before she took over. Dr. Pace began asking me questions and then answering any that I had. She was very nice and made me feel comfortable. She went over what I should and shouldn’t do for the next 24 hours.

I was told not to exercise, bend over, hang upside down (they actually had a patient do a trapeze workout class once so this is a warning they now must give), sweat, shower (apparently water pounding on the face is a no-no), or rub my face for the next 24 hours. I was advised to get lots of rest. I took all of this very seriously as I did not want to end up with one eyebrow higher than the other or something crazy. So I canceled the workout class I planned for Wednesday morning and embraced the no-makeup, dry shampoo look.

Everything was going smoothly… until I saw her preparing the needles and I came to the realization that she was intending to stick me with them. I casually asked her how long she has been doing this and she replied by dodging the question and choosing instead to explain that this was a teaching hospital, she was taught by Dr. Coleman and is totally capable of administering the Botox.

I mean, I didn’t really know what to think. I’ve always been somewhat of a people-pleaser and I would never want to intentionally hurt anyone’s feelings. I also am known for being terrible at making decisions. However, I know when it comes to my health care I shouldn’t play around and need to learn to speak up for myself because no one else will. And as I stated before, I watch Grey’s Anatomy. I know what a “teaching hospital” is. And I have no intention of letting “007” or any of those other eager wannabe doctors near me.

I kept quiet until Dr. Pace completed prepping everything and then she asked again if I wanted her to do the injections or if she should go get Dr. Coleman. She continued to say she would not be offended either way about 6 times, all the while making me feel like she would most definitely be offended. I looked to my mom for guidance. She gave me nothing. I of course instantly questioned why I brought her. Forget all that nice stuff I said a few paragraphs ago. I felt my face turning red. the pressure was mounting. I again asked how long she had been doing this. She told me 4-8 times a day since July.

Now I’m no math whiz. Actually, scratch that. I don’t do math. Period. I tried to quickly calculate how many months ago July was. I know 4-8 times a day sounds like a lot. But I knew July was in the summer and it was currently still 86 degrees out. Still feels like Summer. So… in conclusion, it hasn’t been that long.

I did a lot of research leading up to this appointment. I watched reviews on Youtube, I read articles, I read blogs, I read Facebook posts — personal reviews, what to expect and how to prepare. The one piece of advice that remained constant in all of my research was that it really matters who is administering the injections. It could not be stressed enough that the person should be a doctor and an experienced one who knew what they were doing. It’s not that I thought this woman standing in front of me was unqualified or incapable. But God forbid something went wrong, I had a bad reaction or it didn’t work. I would always wonder… was it because I let the intern play doctor on me? So I made my decision. And after one long run-on sentence that included the word sorry at least 50 times, I told her I’d prefer Dr. Coleman. And with that, I think I definitely offended someone. But I don’t regret it.

Dr. Coleman came into the room and it was like a breath of fresh air. She was so warm and so friendly. You think this would make me feel at ease. However my nerves began to take over as I realized what was about to happen and the room got a little blurry and her voice became kind of distant and foggy. Once she had me get into THE chair and she had the needle in her hand, I can’t really explain why or how but suddenly and uncontrollably I burst into tears. Next thing I knew a tissue had found its way into my hand and Dr. Coleman was soothing me, asking me how long have I had migraines. Unable to formulate words through my tears, my mom jumped in and I was reminded why I brought her.

It was like my entire journey from 13 years old to now was flashing before my eyes. And all the doctor appointments, the tests, the missed days of school, the missed plans with friends, the strained relationships, the times spent in the dark and quiet, the pain, the effort to get to this appointment had all come to a head and was now showing itself. Dr. Coleman talked to me about hope. I have been trying not to have too much hope going into this appointment. I guess its hard not to though.

After I cried I actually felt even better. It was as if I needed that release. I was able to calm down, I took a few deep breaths and I was back in warrior mode. Whatever was going to happen, now I was ready for it.

Most of the injections were not that bad. Overall it was much less painful than I expected. The migraine I woke up with that morning was on my left side so not surprisingly, I felt the injections on my left side more. The ones at the base of my neck and in my temples were the most painful and the ones in my shoulders I barely felt. Dr. Coleman saved the injections in my face for last.

At this point I was sitting in a chair opposite my mom so we could see each other. The doctor was dabbing my forehead with a tissue and I noticed it was red which didn’t scare me but then I saw my mom’s face. Her eyes were bugging out of her head and she asked, ‘So… how long will she look like that… a few days? A week?’ That’s when I started to panic slightly, but was trying not to move, so asked as calmly as possible, ‘Um… what does it look like?’ And the doctor just said ‘Oh a few hours, maybe a day. Nothing to worry about.’

Later my mom described it looking like I had huge welts on my head, but by the time I even got out to the front desk to book my follow-up appointment they had gone down. This was another one of those, ‘did I make the right decision in bringing her’ moments.

By the time I got home my head was feeling very heavy and the left side of my neck and shoulder were really sore. It felt like I had been beat up a little. Throughout the day I ended up developing a migraine and my neck pain got worse. I took medicine and got in bed early. Falling asleep was hard. Not only because of the pain, but I tried to sleep on my back all night and I normally sleep on my side.

Eventually though, I  did fall asleep and this morning I woke up feeling better but still sore in my left shoulder and my neck. I no longer had a migraine but felt like it could return any second so I took meds to nip that in the bud. I looked myself over and found I have a bruise on my left shoulder, which is interesting to me because that was the least painful injection site. I guess that explains part of the soreness.  It’s also possible that I have bruising on my neck that I can’t see. I’ve been keeping my bra strap off of the bruise all day so it doesn’t bother it and expect to feel sore for the next few days. On my forehead I see the tiniest of red dots where the injection sites were, but the only person who could notice that is me and probably my mom but she’s no longer here so there’s luckily no one else around who knows what to look for.

The doctors said its possible I may start to feel a difference in about a week. I know I won’t be able to really tell if its working until after at least 3-4 sessions. I have my second treatment booked for January 2nd. Again, I don’t want to get my hopes up but its hard after all I’ve been through. So I’ve made a deal with myself. I have a new plan. Expectations Low, Hopes High. Let’s see what happens…