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?
On Monday July 3rd, which is normally a joyous day as it’s my father’s birthday, my family went into mourning for one of the most influential family members we’ve ever had. Our dog of 11 years passed away that day in her favorite place, under the swing set in my mothers arms. She was 14 and had been inexplicably ill for the last month. And I’m sure you are all thinking oh this is just a sappy post made because she’s sad; but truly I think there is something we can learn from her impact as Spoonies. DC (our dog) had been with me since my POTS began. Unfortunately for me, my disorder began at a time when I was mostly forgotten by my family; they were all consumed with problems that didn’t involve me and thus neither did their thoughts. DC never forgot me though. She was often the one waking me up after I passed out by licking and scratching at my face. When I had migraines she would lay with me so I could hide from the light in her fluffy black fur. When I was 14 and entered an abusive relationship I would cry into her fur in a corner in my room as she basically hugged me (she was almost my size). When that boyfriend became an ex and decided that he was going to change that by coming to my home, DC was the one who’s wolf like appearance and large teeth scared him away; for me that was the first time she saved my life. The second time was when my POTS and migraines were so out of control and I was in so much pain that I felt like nonexistence was the only option; and feedback from my mom who had begun locking my in my room when I had a migraine or growing impatient when I was POTSy only increased that feeling. Now, I don’t blame my mother for her behavior, there were other problems going on that she had to take care of, and I never disclosed to her many of my emotional traumas that led to my attempts. My abusive ex had beaten me regularly, the bruises I covered with long sleeved hoodies even in summer, and for a little over a year he got away with having raped me before a football game. This combined with my pain led to 3 suicide attempts; first I tried drowning myself in the tub which of course didn’t work, then I tried taking a whole pack of cold pills thinking that would do it, finally I laid fully clothed in the warm tub, cut my wrist a little, took a bottle of pain meds, and went to sleep. I woke up rather quickly to the feeling of scratches against my arm, face and chest, the sound of barking, and her licking the blood on my wrist. I quickly vomited up the pills as I leaned over the side of the tub; and then passed out again. DC stayed with me, and kept licking and scratching to wake me. Eventually she was successful in fully waking me (as I continued to vomit) and I realized I could never put her through that trauma again. From then on, she was my angel. No one other than my psychiatrist has ever heard this story before today; but I think it is necessary for every Spoonie to know that sometimes when you feel like giving up, there are forces that will stop you and loved ones that you will scare. Chronic pain patients have some of the highest rates of suicide amongst other medical conditions, but for many of us there is hope and even sometimes an angel like mine. Thanks to her diligence 8 years later I am here in grad school working to become the professional that helps people who are in those shoes I wore, so that maybe I can be someone’s angel. So I hope she rests easy on the other side of the rainbow bridge.
**Side Note: I also understand the necessity of palliative care and I fully back physician assisted suicide. But I feel that it takes a team of doctors and your caretakers to help you make that decision because no one should have to go through that pain alone.
Today is one of my “good days”, it’s not that I suddenly feel healthy; it’s more so I can tolerate normal activities in spite of my illness and pain. As of now I am adventuring new parts of my home town with my boyfriend in 90 degree weather. This worries me solely because with POTS heat is the enemy and I already have enough trouble staying hydrated. But I only get to see me boyfriend a few times a month because I’m away at school so I’m not giving up these precious days. Also tonight is my father and sister’s combined birthday bbq; and I would never miss their birthdays. I found out that my sister has actually already had a party with her friends and invited my other sister but not me. When I addressed this with my mom I got a hurtful response “she probably just assumed you would be too sick to come anyway”; tonight at the bbq I will put on my bravest face and prove to them that I am not this sick frail little woman who can’t do fun things with friends and family. I’m fact yesterday I went on an adventure with my boyfriend through the river in our town and through some old vintage shops and went to the best diner all before going to celebrate my nephews 5th birthday. I made it without a cane yesterday and I rocked my port proudly. And next weekend I’m going with a friend for a bachelorette weekend at her cousin’s private beach house where we will be doing all the wild and crazy things that bachelorette parties entail. My friend didn’t assume that I would be too sick to come. She was ecstatic to hear I was coming and fully embraced my need to bring supplies. So today I will adventure and I will keep proving that it’s not all bad days for me.
So anyone with chronic pain, severe depression, chronic fatigue, or Ehlers-Danlo’s syndrome can tell you, every day hygiene for healthy people is a struggle for us. And don’t judge us for this fact, for me with my POTS a hot shower could make me pass out, with my port (which is accessed 5 days of the week) I can’t get it wet, and with my migraines a hot shower will make me vomit and increase my pain tenfold. This is all not to mention that with my chronic fatigue and depression it takes a lot of energy and motivation just to get undressed for a shower. This is a struggle many of us know, but we hide from the public. Now I struggle to shower, so I have adapted to sponge baths on days when I have to go out and I can’t get myself to shower, if I’m not going out though I’m not moving. But there is one pro to showering less often than a healthy person, it actually increases the health of my hair by not exposing it to such heat so often and it preserves my lovely violet dye job a little bit longer. I have also adapted to not having energy to wash my face or brush my teeth, I keep a water bottle and spit cup with a dollar store toothbrush on a table near my bed and face wipes on my nightstand, this way it takes less energy, but it still gets done. Another pro to showering less, I save a ton on shampoo and conditioner which since I use the salon brands is a lot of money. Con to this, I rely on dry shampoo and Pinterest “how to hide dirty/wet hair” to make it through my week and still look professional. But if someone you know or love that has a chronic illness seems to be having a hygiene problem, don’t judge them, they’re trying their best. But maybe carefully choose your words to encourage trying this great new shampoo you found or invite them to get a blowout so they don’t have to bother with their hair for a few days. Just be kind, and remember we’re trying our best and for you our best needs to be enough.