I’m just your average 23 year old grad student hoping to make a difference in the world; you know that idealist we all imagine millennials to be. But in spite of my desires to be that strong idealist who has the power to do anything, I live in a constant state of imbalance, from the age of 2 my parents knew I wouldn’t be given a normal healthy life. It started with a toddler running around screaming and crying while holding her head; my parents later learned I was experiencing migraines. Who could imagine a 2 year old with a migraine? This continued with a primary school student who began to feel chronic pain and suffered multiple migraines a month, luckily she befriended the school nurse and was not often treated as a faker due to her invisible illness. As I progressed into adolescence I began to have uncontrollable bouts of fainting and severe low blood pressure; my doctors treated my symptoms with salt and beta blockers but couldn’t quite find a diagnosis. It wasn’t until my late teens that it all began coming together, and I became a full picture to my team of doctors rather than multiple problems to treat separately. My neurologist discovered that I had a cerebral malformation known as the Chiari Malformation, which essentially means that my cerebellum overgrew and has been pressing on my spinal cord my whole life. This malformation was the root of many of my problems, but the only treatment was a surgery that had more chance to harm than help. I learned that my fainting and low blood pressure were from a disorder known as Postural Orthostatic Tachycardia Syndrome (POTS) a form of dysautonomia that is related to the Chiari Malformation and is also responsible for my chronic fatigue. My doctor discovered my Chronic Fatigue Syndrome when he began making me keep a journal of my sleep and energy levels; even though I average about 11 hours of sleep per night I still feel constantly exhausted. As if this list hasn’t grown enough, I also found out around the same time as my POTS diagnosis that I have severe Polycystic Ovary Syndrome (PCOS) which causes me chronic pelvic pain. It’s almost as if I was covered in glue and had a copy of the New England Journal of Medicine thrown at me and I had to live with whatever words stuck.
These illness took a great toll on my younger self, causing a variety of psychological problems including clinical depression (for obvious reasons), Obsessive Compulsive Disorder, and Generalized Anxiety Disorder. I could never feel control in my life except for over small things, that was how I developed the OCD. I could control locks, and ensure that one thing in my life is constantly secure. My illnesses made me feel for so long that I could never have the life I wanted, and occasionally that fear returns, but I have learned how to fight back and this blog will catalogue my journey.
All of my chronic illness warriors out there who have had to use steroids have probably had the experience of “Moon Face” and those of you lucky enough not to have experienced it have still probably heard of it. Moon Face is spoonie slang for swelling of the face and/or body; typically this is due to meds (more specifically steroids). As I was sending my partner his good morning “make an ugly face” Snapchat when I noticed my face looked like a blimp, I turned off the filters to be sure it was really what my face looked like and it was there, the dreaded Moon Face. I used to be ashamed of my appearance whenever I got Moon Face because I thought it made me look ugly and I would get the ever running swarm of elderly ladies at the supermarket saying they “could just pinch my chubby cheeks” (if you’re not my grandma don’t dare try). But as I have grown older and my relationships with my core circle of people has solidified a little more I don’t worry as much about my Moon Face, because my people know that Moon Face means I haven’t given up, that I’m still getting treatment, and that I have a chance to be healthier than yesterday. My Moon Face is part of my journey to health, and it’s only temporary. So to all of my fellow CI warriors, rock that Moon Face. You are perfect the way you are, and I know that’s the ultimate cliché, but in real life being strong enough to roll with these punches makes you pretty damn perfect. So battle on, Moon Face, spoons, and all.
When I first began dating my partner, I was sure to disclose my health situation after the third date. I explained to him what my situation was, which unfortunately for him was much better than I am now; but I did give him fair warning that I could get worse. Surprisingly he responded with affection and almost a sense of respect for the fact that he had never noticed before that I even was chronically ill (we’d known each other for a while before we began dating). He comes from a family of doctors, and his sister is chronically ill as well; he told me “if you don’t deserve unconditional love because you’re sick, then how could my sister ever find someone to love her?”. This was the most amazing sentiment anyone I had ever dated had said to me. When my illnesses began to spin out of control last fall, he was by my side the whole time. I would continuously ask “Are you sure you want to board this sinking ship?”, to which he would always reply “Of course, because you’re not sinking”. I had been repeatedly told by exes that I was a broken person, that I was damaged goods, or that if we had kids they wanted donor eggs because they didn’t want children with my DNA. But my partner has been amazing and kind, he cares for me as if we were already married. He’s held my hair back as I puke on the side of the highway from a migraine, he picked up my colon prep for me from the pharmacy before my colonoscopy, he even offers to drive me to my doctors appointments. As of last week we have been together for one year and 4 months, and he gave me a beautiful promise ring to remind me that when he sees his future it always has me in it. He is the first mate on my sinking ship, and he’s helping me find ways to patch my holes.
We’ve all been asked after a bout of illness “how are you feeling now”, “Are you better”, “Back to normal yet”, and many of us answer with a simple “I feel better”. For your average person who just got over a case of the flu, these words are praiseworthy; but for a chronic illness warrior these are some fightin’ words. It feels as though every time I speak those 3 words I am tempting fate, like saying “Bloody Mary” in front of a mirror. Last week during one of my most terrible weeks for pain yet, I made the mistake of using those words. After leaving the emergency room my mother called to see if their treatment had worked, and silly old me used those 3 fateful words to reassure her that her baby was ok. Within half an hour of the drive home from the emergency room the pain had returned tenfold. I was crying from pain the rest of the ride home and after I slowly worked my way to my room with the help of my friend, who had been driving me around all day, I slumped into my bed with every icepack I own running down the right side of my body. I had cursed myself, but really this ending was an inevitable outcome from the poor treatment I had just received. The true problems of this curse lie in a second feature. On “good days” or “low pain” days, we tell ourselves “I feel better” and that can be the worst thing to tell yourself when you’re too stubborn to pace your activity level as well as your physical energy, and your mental energy. “I feel better” can be a trick to us spoonies, and can lead to severe energy deficits, flare ups of our illnesses, and a multitude of other problems. And the worst part is having friends and loved ones come to you after you’ve over done it and ask “But you were so great yesterday, why aren’t you ok today?” or the hollowing “We had plans, you said the other day you were feeling better. How could you let me down like this?”. Therein lies the true curse of “I feel better”; in the words of Admiral Akbar “IT’S A TRAP!!!”. So when you feel like using those three beautiful words that you pray will last forever, remember to pace yourself and anticipate physical reactions if you just got over a mysterious illness like I had.
To the wonderful souls of doctors that actually listen to your patients, I would like to express my upmost gratitude for your bedside manner and your willingness to listen before you “help”. This past week I encountered quite a few doctors after a Botox shot for my migraines accidentally hit a nerve. I was in severe pain down the right side of my body from Monday until Saturday and addressed my concerns with quite a few doctors. First I messaged my neurologist through her patient portal and told her that I thought my migraine was getting worse, rather than message me back asking about the type of pain or how bad it was on the 10 point scale her nurse simply sent a message back saying “I have passed along your message and it will be addressed as soon as possible. I have yet to receive a reply. I do not blame Dr. H for this, it is primarily up to her nurses to keep her on track with important patient messages and emergencies; and in person Dr. H is one of the best listeners I have encountered as far as doctors go. I especially like that she understand that I have a background in neuroanatomy the biological aspects of her treatments, thus she speaks to me in words that my parents don’t understand but I fully grasp. In truth I hate when doctor’s speak to me in laymen’s terms after I have expressed my background knowledge; it becomes hard to advocate for myself when I am spoken to like an ignorant child. I called doctors upon doctors and even went to the emergency room only to be told “oh that’s just an atypical migraine for you”, within half an hour of leaving the ER my pain had completely reappeared because the treatment they gave me was for “just an atypical migraine”, as if in the 21 years that I have dealt with these migraines I haven’t learned to tell the difference between a migraine and other types of pain. This is what I dealt with from doctors all week until Saturday. I attempted to self advocate and express my concern that I wasn’t having a migraine and was terrified that it might have been a stroke, but they all gave me treatments as though it was a migraine so the pain simply continued to progress. By Saturday I had received a call from my mother letting me know that she had set me up an appointment with a new doctor at my GP’s office and that I should come to town and we could go together to find out what was going on. Let me tell you, this doctor was incredible, her first words after greeting me were “So I know the nurse already spoke to you about your symptoms, but could you tell me in your own words what is wrong?”. It was a miracle, I found someone who would listen! Over the course of the week my mother and I had been emailing each other different research on possibilities of what was wrong with me and we both concluded that it must have been a bad injection from my last treatment that Monday, and that Dr. H probably hit a nerve; so I was ready to sit and discuss exactly what was wrong, how I felt, and what I thought it might be. Dr. J, the new miracle of a doctor, ran a few tests just as a precaution. Due to the lack of swelling of the lymph nodes and she trusted my opinion that it was not at all a migraine, she concluded that I must be right and actually found the needle mark for which one of the 27 shots probably hit that nerve because she noticed it was a little knotted and bruised. She listened and treated me as an expert on my own body and it was amazing. I know there are more doctors out there who have the same compassion, as most of my specialists are of this understanding disposition. I am forever grateful for doctor’s who listen when you self advocate and who don’t assume that you are clueless about human anatomy. Not only have I gathered a plethora of knowledge on how the human body works, I have also had a lifetime of experience as a patient with chronic illnesses and have had them all well explained by doctors throughout the years. So when a doctor allows their office to be a space where I am the expert on my body and they are the consultant, it seems to make a big difference in how fine tuned your care is to your individual health. So here’s a shout out to all of the doctors out there who listen when we need you, you are literally our lifesavers.
So as I have previously mentioned, I get Botox injections in my head, neck and shoulders in order to treat my migraines. Now my neurologist is amazing she’s one of the best in my state and normally she has the aim with a needle that DaVinci had with a paintbrush. Unfortunately this week I got to ride the pain roller coaster for something I hadn’t even considered to be of consequence for me. Dr. H accidentally hit a nerve on Monday as she administered my twenty something shots and as I was already in major pain when I arrived (ocular migraines have wonderful timing) I didn’t notice this new pain growing. I spent a week in and out medical offices for help (I’ll delve into this later) as my entire right side of my body was inflamed. Wednesday and Thursday I couldn’t even move due to the pain. My neighbor Sam was so kind that he offered to help me to the bathroom, bring me food, take care of my service dog for me, and even drive me an hour and a half to the emergency room; he did all of those things other than the bathroom part, for that I was willing to wiggle worm crawl the 3 feet to my toilet for the sake of my own modesty. It wasn’t until Saturday that the cause of my pain was discovered and I began anti inflammatory treatment with Midrol, Rx strength Ibuprofen, and Toradol (alongside some powerful muscle relaxers). I woke up this morning at a 1.5 on the pain scale compared to the 9 I was at on Saturday morning; and we spoonies know that our pain scales are typically skewed so it took a lot of pain to have me reach a 9.
All of this to say I had a bad Botox treatment and it terrified me. But after all of these ramblings about what I just went through, I have no intention of stopping my Botox treatments. My mother and father are nervous about my continuing treatment, however when you’re getting approximately 27 shots it is highly probably that something could go wrong. I mean why else would you have to sign a consent form before every treatment. I also don’t blame my doctor, I was particularly twitchy during our session which may have also led to the mistake. My Botox treatments from Dr. H are clinically upheld (I refuse to use the word “prove” ever, nothing can ever truly proven only backed up), and they are one of the last treatment options I have left. Millions of U.S. Americans receive Botox everyday and I am sure plenty of them have the occasional side effect too; but should we risk our own chances at healthy lives because of one scary occurrence? In my opinion, no, all of my treatments and medications are my chance to become the charismatic and strong woman I want to be every day that ends in “y”; not just on days that my pain level is low enough to tolerate normal activities. I think because of my 21 years as a chronically ill young woman not only have I learned to tolerate and hide my pain, but I have become harder to scare away from research backed treatments that I am given a full understanding of how they work (my background in neuropsych helps with that part). So I had a bad stick, whatever, I’m not permanently injured nor am I severely maimed so I will simply remind Dr. H about this occurrence at my next appointment and continue my treatments.
**DISCLAIMER** All medical treatments have some level of risk to them. Always discuss your options and the risks with your doctor before trying any treatment or continuing treatment after a bad reaction such as the one described above. This story is my own narrative and may not necessarily fit your particular problem or be good advisory material for you. Always check with your doctor for help.
Recently I have been rather defiant of my illnesses; I ignore the voice in my head that tells me to slow down or I’ll be down for the count for days. I’ve gone 4 days without infusing just so I could go to my friend’s bachelorette weekend at the beach without having awkward stares from strangers at the needles in my chest as I lay in the sand next to 8 perfectly healthy young women. The sun and alcohol mixed from an occasion of this sort is something that my rational self would remind me to avoid, but my little devil on my shoulder got me with “you’re 23, live it up while you can; after all you probably don’t have as much time left for this type of thing as the rest of these girls”. I was bed ridden for 3 days straight, literally bed ridden not just exhausted but truly stuck in bed for everything except using the bathroom my neighbor had to bring me meals and walk my dog for me all 3 days, after that and walked with my cane the rest of that week and could barely see straight enough to drive. Then there was the trip to DC with my boyfriend. We went on lots of adventures in 97 degree heat and I deaccessed myself the first night when we got to the hotel, even though just two days earlier my infusions had been ordered by m doctor to double and I had only completed 3 so far that week. But nevertheless I persisted as the hard headed woman that I am, I was determined to show my boyfriend around one of my favorite cities in the country. After this I remained very POTSy for about a week.
I think I am learning my lesson though. I have begun really sticking to the doctors’ orders for the last week and a half. I carry my cane with me everywhere now; not just when I feel like I won’t be judged. My boyfriend helped me adapt a small backpack to carry my infusion supplies so I can hang my bags inside and thread the tubes through my shirt to infuse on the go so that I don’t miss any more of my fluids. Yesterday I went for my second round of Botox for my migraines, which I had been trying to put off because this time I was going to have to go alone (my mother accompanied me for the first round) and this is 27 shots going into my head, neck, and shoulders. I have also begun to carry spare pill boxes to ensure that I don’t miss any doses of any of my medications; I even keep access supplies and half a liter of saline plus a Heparin flush in my purse at all times. I have recently begun using a small humidifier by my bed at night with an essential oil diffusor that releases a combination of lavender and peppermint oils for migraine flares. I’ve noticed that this has also lead to a change in my skin, in that it has begun to have a smoother texture. And of course, I have been constantly drinking my 128 oz. of water a day thanks to my 32 oz. Brita bottle.
Over the weekend I discovered that following these orders more strictly that there are actual measurable differences in my health. My resting heart rate has gone down to 74 when I meditate, compared to the previous average of 114. Fair warning of TMI, my urine has gone from almost brown due to dehydration to nearly clear every time. My blood pressure has begun to regulate itself again and is consistently at a healthy rate for someone my age as well. I hope to soon be able to resume my daily yoga practices and eventually get back to the gym for my weight training again. These tiny steps up the ladder towards homeostasis for me have been bounds for my self confidence. It’s now a measurable fact that little by little, I am stronger than yesterday.
As a patient with multiple chronic illnesses I have quite a few doctors whom I regularly visit, especially my POTS specialist Dr. S. I see him at least once a month and check in weekly via the patient portal. I also have my general practitioner, who manages my pain levels and keeps an eye out for infections or any other side effects of my many conditions, him I see approximately once every two months unless I have an illness. Then there’s my neurologist, Dr. H, who manages my migraines with Botox injections every 12 weeks and has a special migraine center that I can go to if I have a migraine emergency where the pain lasts more than a week and doesn’t seem to slow down, that center could knock out the pain from a punch by Zeus in just a matter of hours. I also have my OBGYN, Dr. W, who manages my PCOS and my sexual health. And let’s not forget Dr. L, who manages my mental health. Now I live in a very rural area and it takes about an hour and some change to get me to any one of these providers from my apartment. But it’s truly amazing that this many doctors are available to me, granted that is due to my father providing me with great insurance, however I fear, as all of us Spoonies do that access to these care providers may become limited for us in the USA. I am scared that the literal life saving treatments from Dr. S might be forced to stop due to expense or my pain medication may be stopped because the insurance doesn’t want to cover it. These are questions we must ask ourselves, can we let this happen, is this fair, where are our human rights?