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