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.

Advertisements

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