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.

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.

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…

 

The Perfect Match

Imagine this.

You spend all your life searching for “The One”. You think you find him once but then distance tears you apart in what becomes a painful, messy withdrawal. Then after two years of searching for someone new, you finally find someone else who understands you and is able to give you the support you need. . . only to find that they don’t accept insurance!

Of course, I’m talking about finding the right doctor to help treat your migraine condition.

In New York City, it is almost impossible to find a reputable doctor that accepts insurance. It seems that all good doctors come with a big fat bill attached to them. Quite frankly, that doesn’t seem fair to me. It seems they’re getting paid under the table or something, and it feels illegal. I feel people are getting cheated and deprived of services they should have the right to have access to. What is an entry-level employee to do? I know I’m already living above my means and struggling to stay afloat as it is.

An initial consultation with a neurologist is usually about $500 and each follow-up appointment runs at about $300. The follow-up appointments occur about every 2-3 months, depending on the patient’s circumstances. That ends up costing more than just a couple pretty pennies.

If you can’t pay your bill right away, you have the option to set up a payment plan or you are sent to collections. Of course, no one usually tells you this until after the balance is overdue.

So what really makes up the perfect match?

Does it matter that your doctor is the head of the headache department and has the best credentials? Or do you settle for the doctor who may have less experience but accepts your insurance?

I don’t know. I don’t have any answers. I wish it was mandatory for everyone to accept all insurance and I wish getting treated for a condition no one has any control over wasn’t so stressful. It’s certainly not helping to lessen my headaches, that’s for sure.

No-Brainer

As a 23-year-old living in the city I tend to face some obstacles having a migraine condition and also wanting to have a social life. I mean, can you blame a girl? This isn’t an issue that is new to me, however — I’ve been battling my inner social butterfly since I first was diagnosed with migraines in the 8th grade.

In each stage of my life my migraines have brought on different consequences. In high school I missed a lot of school because of my migraines, and surpassed the 20 days we were allowed to miss a year.

In college my hangovers lasted a whole lot longer than anyone elses. It was hard adjusting to living in such close quarters in the dorms. My roommate didn’t understand when I needed complete darkness and silence, which I couldn’t expect her to, and often took it personally, which made me feel guilty for being such a grouch.

Now as I am in my 20s it has come down to choosing between a social life and feeling well. I have come to learn that I can no longer drink. It’s just not smart for me. About a year ago, I had an ulcer in my stomach that ruptured and I was in the hospital for two weeks after having major surgery. If I had gotten to the hospital a few hours later, I might not be here today. During my recovery, my doctor informed me that I could no longer have distilled liquor — vodka, tequila, rum, gin — nothing! The only drinks allowed were wine, champagne, and beer. The funny thing is wine gives me headaches most of the time. So, really I shouldn’t be drinking at all. It has been a major adjustment for me. It seems like such a small thing but everyone my age seems to be getting less and less mature by the minute. Everyone is still in that college mindset and they don’t seem to be getting out of it anytime soon. I actually can have a pretty good time sipping on a water with lemon all night and hanging with my friends. Plus, it looks like I’m sipping on something much stronger. And with my personality, people usually end up thinking I’m drunk anyway. But the reactions and interrogations I still get about it boggles my mind. It’s like what’s more important? My health or getting wasted? Seems like a no-brainer to me.

Even without drinking, I still tend to get headaches being in noisy restaurants or staying out too late after a long day. The right amount of sleep and keeping a similar routine is key, while not always practical. I still need to learn when to just go home and call it a night. I tend to have a guilty conscience though and feel that I need to stay out and spend the time with my friends. I don’t want to be labeled “that girl” who is always leaving because she has a headache. I need to learn not to worry what others are thinking about me and instead worry about that migraine that is coming on. It’s definitely a balance and you need to know your body and listen to it. It’s something I am learning and understanding more with each new day.