It's Okay to Not Be Okay + How to Deal

6:26 PM chronicmigraineellie 0 Comments


Something that not many people tell you when you're dealing with a chronic illness is that it's okay to not be okay. On the outside, we put up this front- that despite how chaotic our lives are medically, we try and make them seem as perfect and put together as possible. However, it is necessary to give yourself the space to not be okay.
Living with a chronic illness is hard. It's not a walk in the park. I know that I try as hard as I can to make it seem like my life doesn't have bumps, or even have ups and downs. However, I also give myself space to not be okay. Most importantly, I cry. I am a proud crier. I cry all the time. And that's because IT'S HEALTHY.
I recently just got some news (which i'll share once I know more information) and have had to deal with my next steps, new doctors, and what this means for my life. It's so easy to get carried away and lose sight of yourself and your goals in life because of different diagnoses. As patients, we are often only given the bare minimum of information so that we have to look up more information ourselves. Well, we all know how that goes. Googling your symptoms should always be taken with a grain of salt. ALWAYS. That is non-negotiable. Furthermore, if you're a special medical snowflake like myself, you will not always find relevant and helpful information about your condition. You may just end up freaking yourself out and frantically calling your doctors- which is not fun for anyone. Furthermore, it'll just add even more stress onto your already rising stress levels.
The way to use this type of exploratory Google research is to create questions for your doctor for your next visit, so you can be informed and then bring these ideas up to your doctor(s). Try and write down a list of concerns, medicine questions and general informational questions about your condition so that when you do see your doctor, you're not totally frazzled and unable to ask questions.
Getting to the point where you can think rationally about your condition can be hard too. I know that sometimes I forget that what's going on is actually happening to me, and not someone else. I have to take a step back and pull myself back together. Sometimes it takes dissociating from my illness to think about my medical problems so that I don't think about the pain and trauma that I go through daily and can logically and realistically think through my life, my medications and what I need to do to get the best care for myself.
Whenever I tell people about my medical problems, they always ask me if I know what's wrong, why I became sick and if there's a way to fix it. Looking into someone's eyes and saying "No, they have no idea what's wrong with me, there's no cure for migraines and I may grow out of them but we're not sure" is heartbreaking for me because it brings back all of the emotions that I work so hard to keep down about how helpless that I feel. I always feel like I have to justify my answer by saying "but I'm doing better and I'm more stable than I have been" and other phrases like that almost to placate the sadness and remind myself that things seem to be looking up. We all do what we need to to keep going. Personally, I look forward. I set flexible goals. I do everything I can to make myself feel the most empowered and in control that I can. I also give myself the time and space to break down. Because this is hard. No one should ever feel like they're carrying the burden of their illness alone. Reach out to someone, talk to a friend about how you feel and set short term goals for yourself, no matter how small you may think they are. Sometimes, just getting out of bed and showering are totally valid goals. Know that you need to give yourself the time and space to recover, and by doing that you are already helping yourself. A healthy mind is one that is both realistic and optimistic. As a spoonie, you need to have both so you can take care of yourself, mentally and physically.

As Chronic Migraine and Daily Headache month is coming to an end, I hope you all learned something from the posts that I did every day on social media. If you haven't looked yet, go to my Instagram, Twitter and Facebook pages to catch up on the informative posts. Feel free to share any of the pictures to raise awareness. Even though June may be coming to an end soon, my fight to raise awareness about Chronic Migraines and Invisible Illnesses continues. As always, have a lovely, migraine-free week.

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Finding Your Voice During Pain

1:02 PM chronicmigraineellie 0 Comments

Ever had a thought on the tip of your tongue but you can't figure it out? Imagine that, but with every single sentence you try to form. For migraine patients who have neurological complications with their migraines (like me), talking can be one of the most difficult tasks. Last week, I went to CVS to pick up a prescription and when asked for my birthday I gave the day and year as 96/1924. I didn’t even realize that I had said anything wrong until the pharmacist asked to verify my birthday for the second time. Simple questions like “are you okay?” and “how painful is it” can bring me to tears as I struggled to even form the words yes or no. The pressure that comes from having to quantify your pain when you can’t see, listen or speak without feeling like every cell in your body is on overdrive is stressful, adding to the pain of the migraine.
Now, I’m sure you’re thinking that there are pain scales to quantify your pain, a catch-all scale that provides “easy” ways to tell doctors your pain. Yet how easy is it to figure out whether your pain is a 9 or 10 when there seems to be almost no difference? To me, each migraine sufferer has a different pain scale. For example, what would be a 4 on the pain scale for me might be an 8 or 9 for someone else. Everyone tolerates pain differently.


Furthermore, when I am in a doctor’s office or ER and usually unable to communicate, eyes clamped shut to keep light out and trying to breathe and block out the loud beeping sounds and hustle of the office or ER, the last thing that I want to do is look at a chart and try to quantify my pain.
So how do we fix this? When I was a patient at Cedars-Sinai Pain Center, they had a numerical pain scale, but they also had words accompanying them. I could shake my head yes or no answering questions like “is the pain throbbing or shooting?” and “is it a dull pain or a sharp pain?” Through this way, it was much easier to convey how much pain that I was in, even though half the time I was getting ER treatments I was visibly in pain, crying and sometimes screaming.

When I was in the hospital in February for the blood clot, I made a joke to my ER doctor that that was the first time that I was in an ER and “actually had my brain.” She laughed, but didn’t totally get it, because she didn’t get how serious that my migraines were.  However, I was totally serious. In my own morbid sense of humor, I realized that this was the first time that I could truly advocate for myself. Countless times I had been refused treatment or given ibuprofen in ER’s because they would not understand how much pain I was in, or how to treat it no matter how much I said that I needed DHE or that my parents talked with the ER doctors and coordinated with all of my specialists. Over the years, I figured out a good way to try and line up the road to treatment by creating a series of notes on my phone or on a notecard in my wallet.

This notecard contains:
1) My full name
2) List of current medications and diagnoses including rescue meds;a way to denote your rescue meds is by putting PRN, which means “as the situation demands” is medical terms. Make sure to note when you take your meds; i.e. if you take them in the morning, put AM and the amount that you take. If you are unresponsive or cannot speak well, this gives the attending doctor information that can help them make medical decisions. 
3) Emergency protocol: what do you usually get if you go to the ER or, if you haven’t, ask your specialist what they would recommend for the ER doctors to follow in the case that you are not able to contact them while you’re at the ER
4) Phone numbers of your primary care physician and specialists
5) Emergency Contacts: have a list of friends, family and friends that the ER can call in case you have to go in alone. I cannot stress how important it is to have someone with you when you go to an ER. Having someone there with you can make a huge difference in your treatment, as they can help you advocate for yourself to get the treatment that you need, not just the bare minimum (or in some cases, being discharged before your needs are addressed).

Unfortunately, the U.S. medical system rests on the ability of the patient to advocate for themselves. Sometimes, this can lead to potentially dangerous situations, like how my blood clot almost went undetected twice because an ER refused to run tests on both separate occasions that I was there. It was only because I was stubborn and forced them to do something that they found the clot. Unfortunately, migraines are much trickier because they are not physical. You can measure blood pressure, sure. However, measuring the pain is another problem because there is no physical indicator and because it looks so different for every person. We need to change how hospitals and hospital systems evaluate pain, to create a more effective way to comprehend and explain pain. Patients need to be part of this process so we can create the best environment to assess and treat pain without placing more stress on those incapable of quantifying the pain.
I want to start a national revolution and conversation regard invisible illnesses and chronic pain. Do you want change this broken system? Join me as I raise awareness in June for Chronic Migraine and Daily Headache Awareness Month, on instagram + Facebook (chronicmigraineellie) and Twitter (hyphenated_dk).

As always, have an amazing, migraine free week!


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