October is finally over. It’s been a whirlwind of activity and unexpected challenges, and I’m glad to have it behind us.
The move is done except for unpacking boxes, and we’re determined to not let that linger too long. We’re taking our time to carefully choose the furniture and decor items we want in our space and so far we’re very happy with our choices in feathering our nest. Our new adjustable bed is fantastic, and while I’m still in the adjustment period for it, I think it will be very good for my chronic conditions.
The Bell’s Palsy has mostly resolved, thank goodness. My doctor can still detect some very slight droop in the eye and mouth, I still have to be careful when applying makeup or moisturizer to that eye because it doesn’t close all the way unless the other eye is also closed. But my speech is normal again, and my vision is almost back to normal. The eye gets twitchy sometimes, but that’s normal due to the nerve regenerating.
I had said I was going to start doing NaNoWriMo (National Novel Writing Month) once I was done with grad school. Last year I was having flares of my conditions too bad to manage to keep up with the writing. This year I am coming off a really stressful period and just feel like it’s too much to put myself under the pressure of a deadline right now. I think it’s the better part of valor to decline yet again. I will have opportunities for NaNoWriMo camps in the spring and again next November.
Besides, it’s not like I’m going to stop being creative. I am going to work to start putting more content here on my blog on a more regular schedule. Now that I can speak normally again, I also want to start work on a project I’ve had in mind for several months which is a YouTube channel/vlog focusing on awareness of chronic illness and disability. I don’t expect to get rich, but I hope to get enough of a following to raise awareness of chronic illness, and the challenges we Spoonies face. Especially we Spoonies who are “well enough” to work, but there are trade-offs in other parts of our lives to carry it off. If I can manage to get enough followers and supporters to justify upgrading my equipment beyond my new iPhone (there’s another story in that) and my iPad, that’ll be cool too. So I’m working on several initial scripts for that endeavor, not sure when I’ll have enough material to feel comfortable starting that off, but I’m hoping by Thanksgiving and definitely before Christmas.
So... yeah. I woke up yesterday morning with an odd numbness on the right side of my tongue and my right upper lip. But had waaayyy too much to do, being in the middle of packing to move (movers come tomorrow, and we’re way behind on packing) so I went about my errands after thinking “hmm, that’s odd”.
By noon, the numbness had spread to most of the right side of my mouth, my right cheek had started twitching, and my right eye had started burning like it was dry. Really dry, like Sahara dry.
I mentally said several VERY vulgar words and took myself off to the bathroom mirror with my phone camera to do some stroke assessments. Effects limited to the face. Ok, that’s good. No problems speaking, and the fact that I remember all of the stroke assessment means my cognition is probably fine. Probably no need for 911. Did the rest of the detailed assessment and I was 99.9% certain I was dealing with Bell’s Palsy and not a stroke or anything else, really.
I’m going to interject some nurse education stuff here. What I did was damned stupid and you, Gentle Reader, should NEVER, EVER, EVER, do what I did. If you or anyone you love develops facial weakness or numbness on one side, you should hasten to an emergency department and let them determine what’s going on. I’m not a doctor, I am not trained or equipped to diagnose anyone, including myself. That we nurses and other medical professionals do it with ourselves and our families is well known, but it doesn’t make it smart. I’m not just saying this to cover my legal butt here. I’d feel horrible if anyone who read this decided they were having similar symptoms and postponed care only to find out they were having a stroke instead. When it is a stroke, time is brain. Let the professionals figure out what’s going on, don’t waste any time.
Anyway, I didn’t delay care for long, because even though I was pretty certain it wasn’t a stroke, it’s imperative with Bell’s Palsy to get steroids started as soon as possible, so I got into my doctor’s office quickly, got my diagnosis confirmed by the doc taking walk-ins (love my doctor’s office), and got a shot of steroids in my butt. I’ll be on a high dose of steroids for a week, tapering off — hello, jitters from hell — and with any luck the facial paralysis (which is MUCH WORSE this morning) will start reversing soon and be over in a few weeks.
I *so* didn’t need this right now. Which of course, is why it hit right now. The medical literature insists that Bell’s is not caused by stress. However, the main culprit in Bell’s is a virus called herpes simplex virus 1 (HSV1). This is the virus that causes fever blisters on the mouth (typically), and yes, its close sibling HSV2 is the dreaded genital herpes. You can get HSV2 on the mouth and HSV1 genitally as well, but they tend to prefer their normal sites of infection. I have horrible fever blister outbreaks, my primary doc has never seen anything like mine. It’s been confirmed to be HSV1, so it’s most likely the cause of my Bell’s.
My fever blister outbreaks have specific triggers, and while stress doesn’t usually cause it all on its own, like so many other chronic conditions like my autoimmune ones, stress primes the pump and makes flares or outbreaks that much more likely. So the stress of the move very likely primed the pump and my lovely reservoir of HSV1 virii decided to jump from one nerve bundle to another and play havoc with my life this week. I developed an allergy to the medication they treat HSV with, so all we can do is hit it with the steroids to take out the inflammation.
Oh, and having migraine disorder also puts one at higher risk of Bell’s Palsy as well. Joy.
Once one has had an episode of Bell’s, they are also more likely to have repeat episodes. So I have that to look forward to.
Life as a Spoonie is often one surprise like this after another. All I can do is roll with it and try to keep a positive attitude. After all, Bell’s Palsy is a temporary and treatable condition. It’s annoying as all hell, but it’s not debilitating.
So for all my Spoonies out there, I hope you’re able to find at least one positive in your life to focus on today.
Fair warning: tonight’s blog post is going to be long, mainly because it’s going to be educational. It’s also going to include more than a bit of ranting about what I consider to be improper and completely negligent medical care.
Legal disclaimer: the information I share is in no way intended to be used to diagnose or advise treatment for anyone. I am not a physician and am not offering any kind of individual medical advice. If you have any medical questions, you need to direct them to your personal physician, and if you believe you are having a medical emergency, you should seek immediate treatment via your respective Emergency Services.
Tonight’s blog is inspired by a friend of mine who is in her 30s and is suffering from chronic, frequent migraine attacks. She hasn’t shared with me her exact age when she started getting them, but she indicated childhood and we can assume at the very least since puberty (since that’s when they typically go nuts for most of us biological females). For her entire life, her medical providers have blown her off, telling her that her headaches are nothing major, something women have to get out of doing things, they probably aren’t migraines, and/or she’s over-blowing them. She’s been offered Excedrin for treatment and advised to change her diet, try yoga or meditation. Her mother has received the same treatment. As such, she has been denied education about her SERIOUS NEUROLOGICAL CONDITION, treatment of same, and in my mind this care has been completely improper and negligent.
This makes me want to scream and bash things. I have migraine disorder, it runs in my family. I’m also a nurse who got an in-depth education about the disorder after my daughter was hospitalized for a week with a rare form of migraine. The nurse educator and patient advocate in me was in shock hearing my friend’s story about all the doctors who have deprived her of not only relief but also of any level of knowledge and understanding about her disorder for all these years.
So for everyone out there who has faced the same thing, know that at least one medical professional hears you, and gives a damn. While your experience may not reflect this yet, trust me that there ARE physicians and other providers who also give a damn, and they WILL listen to you, they WILL work with you to get your condition under the best control possible. THERE IS HOPE.
My primary physician manages my migraine disorder. A few years ago my symptoms changed and I started having blurred vision in one eye with the migraine attacks. She sent me to a neurologist to make sure it was just the migraine disorder as I’d never been evaluated by a neurologist, and there are a few other things (all are pretty bad) that it could have been. Once he reported back that yes, my brain looks just like a migraineur’s brain, this is just a new migraine symptom for me, she took back over. She has been determined to help me get my migraine attacks under control. At their worst, I’d have 2 or 3 a week. A few months ago when I had a follow-up with her, I was down to pretty much one a month with my menstrual cycle, and another one a month with weather fronts. She wanted to try tweaking the meds it had taken us about 8 months to get to this point, to try and knock out the PMS attack. I laughed at her and told her I’m fine with where I’m at. I have meds and other therapy that knocks out the attack within an hour, that this is completely workable for me. I tell this story to demonstrate that there ARE physicians out there who will work to beat the migraine monster into submission.
One other thing I can offer is some basic education about migraine disorder and some resources that I have found to have good solid information and tools. The resources I cite are not the only ones out there, the internet is vast. These may not even be the best ones, they’re just ones I’ve found to be helpful and trustworthy. Please feel free to comment and share ones you like.
First, let’s get some vocabulary down. Many people refer to the headache itself as “a migraine”, as in “I get migraines.” I have tried to stay away from that usage in this post, though I do fall back on it in casual conversation. It’s not accurate, even if it is easier to say. Migraine is a neurological disorder, and it’s MUCH MUCH more than just a headache. In fact, there are 4 clearly defined phases in the migraine cycle: prodrome, aura, headache, and postdrome (hangover). Not all people with migraine get the aura, so some people only get 3 phases. Here’s a great site that explains the phases of a migraine attack:
Those of us with migraine disorder used to be called migraineurs. In today’s politically correct landscape, we’re advised to use person-first language and say “person with migraine” or “person with migraine disorder”. I’m an analytic person who prefers precise language, so I personally like “migraineur”. But I see the point. I just don’t see it as a hill to die on.
So, to wrap up the language: I have migraine, or I have migraine disorder. I then suffer migraine attacks. One phase of those attacks is the headache, or migraine headache. Fun, right?
Incidentally, there are a BUNCH of different types of migraine. The classic migraine has all 4 phases and is also called migraine with aura. There is also common migraine or migraine without aura, which is just what it sounds like. Silent migraine which is the prodrome/aura/postdrome with no headache - so you get all of the odd neurological symptoms but no headache to clearly tell you what’s going on - fun, right? Some researchers consider cluster headache to be a type of migraine. There are the rare types: basilar, hemiplegic, brainstem aura, abdominal, ocular, vestibular. These more rare types can occur with or without the headache portion, and several of them are often mistaken for strokes. Fun, right? If you get them only every so often, they are episodic. If you get them frequently, or at regular intervals they’re chronic.
Then, there’s the impact. The physicians who are negligent like my friend’s, focus only on the number of headaches. Some who do a little better ask how many days you miss work or school. However, the providers who know what they’re talking about ask how many days your life was impacted - work, school, or leisure activities. Not just missed, but days you weren’t at your best or didn’t do things you wanted to do. And then they look at the days AROUND those days because they know that the prodrome and postdrome affect AT LEAST 1 day before and after.
One of the reasons I get so upset when physicians blow off migraine is that we migraine warriors are at higher risk of some serious stuff. I do not include this section to scare anyone, because I believe knowledge is power. Migraine disorder, especially some of the subtypes, put us at higher risk of stroke. This gets complicated when many of our migraine symptoms are the SAME SYMPTOMS as those of stroke. It’s very important for us to know what our “normal” is, and know when something is definitely NOT “normal” because that’s when we need to go to the ER and get it checked out. Chances are, it’s just a particularly bad migraine, but we have to be careful. There’s also a very rare migraine caused hearing loss. Again, do not be scared about any of this, just learn to be very aware of your body, and listen to it when something is not right.
Ok, let’s move onto something more hopeful, TREATMENT. There’s a lot of options out there these days, and more coming in the near future. There are several meds that can be used to prevent attacks, how well they work varies from person to person so often it’s trial and error but if you have frequent chronic migraine it’s worth the effort. There are also several options for what is termed “abortive” meds. The term means to abort the attack and has nothing to do with Planned Parenthood. 🙂 The most common is a family of drugs called triptans and like every other drug, some work for a given person better than others, again it’s trial and error. Some people find they don’t work at all, some people can’t take triptans. There are some others that tend to be considered less effective, but they work really well for some people.
There’s a bunch of new drugs on the market that are really expensive and are a completely new pharmacological approach to attacking migraine. They work really well (can you see this one coming?) for some people, not so great for others. Because they’re new and expensive, you usually have to have tried and failed all of the standard treatments first. But it’s good to have new options coming on the market. Not so new but still expensive are some other options like botox in the nerves at the back of the head, and some various nerve stimulation implants… people usually try these things after everything else has failed. I use a nerve stimulation device that is not an implant - it’s like a TENS unit for the forehead - and it works great for me, but it’s expensive and insurance doesn’t cover it. I spent an FSA overage on it one year instead of losing it as a known gamble, and I’m happy with it.
You’ll hear a lot about diet changes, triggers, and supplements. Take MOST of this worth a grain of salt. The conventional wisdom for decades has been that a bunch of really yummy food are all migraine triggers and must be eliminated from the diet of all migraineurs: chocolate, beer, wine, cured meats, hard cheese, nuts, MSG, caffeine, alcohol… you get the idea. New research is indicating that rather than being triggers, people with migraine get cravings for these foods during the prodrome phase and then because the headache phase follows them eating the food, it was correlated inappropriately with the headache.
Now, to be clear, you are very likely to find that one or two food items really are a trigger for you. If you suspect this, a food and migraine journal can be helpful. For me, it’s Nutrasweet. For years, I was downing my migraine meds with a Diet Coke, and we couldn’t figure out why the meds weren’t working right. Doh. I also can’t drink beer or red wine. But the rest of the “naughty list”? No problemo.
For supplements, the only one with any real scientific evidence behind it is magnesium and the evidence isn’t overwhelming. Try it (but cautiously - loose stools is a side effect of magnesium supplements) and see if it helps, it can’t really hurt anything except the aforementioned side effect. Incidentally, there are several formulations of magnesium supplements on the market, and amateur nutritionists will argue about which is best absorbed in the body - there isn’t a good answer, but some formulations have less of the side effect for each person than others, so if you think magnesium helps you can try different formulations to avoid the side effect. Others that can be helpful are riboflavin (B2), CoQ10 (no real evidence for migraine but it’s a good supplement to take in general), butterbur (a few small studies show positive effect), and feverfew (again, a few studies show positive effect). Anything else very likely doesn’t have any real evidence. CBD is the new kid on the block, and there’s a lot of anecdotal evidence, but no real scientific evidence, so you’re on your own there.
A note about supplements… if you are on any prescription meds, you really should check with your doctor and/or your pharmacist before adding in supplements. Natural doesn’t mean safe. Interactions with meds can do nasty things like damage your kidneys or liver (every chemical you put in your body has to get processed out through one or the other) or cause other weird side effects. Better safe than sorry. Most doctors don’t really know anything about supplements, but they should be able to look them up. To be really safe, check with the pharmacist, they’re the experts in HOW the meds work and interact.
Your Aunt Mabel or cousin Jane will tell you if you go gluten-free, or Paleo, or Atkins, or keto, or Whole 30, your migraines will go away because it worked for the 3rd nephew twice removed of her neighbor’s co-worker. Seriously. Everyone and their dog will tell you how to fix your chronic condition which by definition DOES NOT HAVE A CURE, DAMMIT. (no, no hard feelings there) If you want to try any of these things, go for it. Some people have a positive response to [choose your adventure] diet and it does positively affect their chronic condition. Atkins almost landed me in the ER, so thankyouIllpass. MY body needs a balance of the macronutrients (protein, carbs, fats) and I’m not messing with that EVER again thankyouverymuch.
Other suggestions you might hear like yoga, meditation, tai chi, or the like are all great ideas. Anything you can do to improve your overall health and reduce stress is great and might reduce your migraine attack frequency. Might not. It is highly unlikely to be anything close to a cure-all.
Whew. Scrivener (the editor I use to write my blog) tells me I’ve written 2,343 words at this point. Da-amn. And I’ve really just scratched the surface. I’ve been a migraineur for about 35 years and have been very lucky with providers that not only treated me without prejudice but also educated me about my condition. Science continues to move forward, and new research is coming out regularly on neurology and migraine. It’s only going to get better from here.
Anyway, I’m going to list some resources here and then sign off. I’ll probably blog more about migraine in the future, especially if people let me know they want more content in this area.
The ultimate source of information, the American Migraine Foundation. Their resource library is extensive, and it’s easy to fall down the rabbit hole of research there. Of course, with so much content, sometimes it’s hard to find something specific I’m looking for quickly, but the site is great. There’s also a provider search.
Another great source of information, the National Headache Foundation. They don’t focus just on migraine, but they have good migraine resources. They also have a YouTube channel with some good panel discussions if you like videos.
For support groups, there’s a ton of them out there. I only participate in one, because I don’t need a lot of support at this point in my journey. I have found that every group has a personality and I recommend checking several out and finding a select few that are a good fit for you.
The one I participate in is Migraine Nation - a closed Facebook group moderated by Lindsay Weitzel Ph.D. who has migraine herself and hosts podcast/videocasts with the National Headache Foundation and features physicians and researchers and other people in the headache/migraine community on great topics.
There’s probably support groups in other media out there, but let’s be real… all media is Facebook. 😀
So, my gentle reader, if you’ve made it this far you deserve a medal of some sort. If you have migraine disorder, I hope this has been of some use to you. If you don’t have it but know someone who does, I hope this has given you some insight into their world. If you don’t have it and don’t know anyone who does, why in the hell did you read all this?!? (Seriously, comment below.)
Whatever the case, I wish you the best. (And if you have a physician/provider who dismisses your concerns and issues, FIRE THEM AND FIND A NEW PROVIDER WHO GIVES A DAMN… THEY ARE OUT THERE.)
I'm coming up on a half-century on this planet, and have moved several times as an adult. Each time, I end up pressed for time, and just throw everything into boxes and swear I’m going to sort through everything and de-clutter, reduce my stuff before I move again. It never happens, because the next time I move, the same thing happens.
This time, I have plenty of advance notice and am determined to downsize, de-clutter, “Kondo”, and otherwise reduce my belongings to just what I want to carry with us to the next place. Minimalism, to a degree. It sounds like Heaven to my Spoonie heart - less stuff to manage, organize, clean, maintain. Fewer spoons needed for the maintenance of my space and stuff. Yay, right?
One problem. Getting from here to there takes a lot of spoons. In the pre-chronic illness days, I’d make like Marie Kondo over a long weekend with a few nights short of sleep and be done. Not an option now. I can clean/sort/pack/paint/whatever for about 30-45 minutes at a time. Then I have to rest for about the same amount of time. I can only do this about 5, maybe 6 times a day on the weekend. That’s not nearly enough time to get through all the things we need to get done in preparation to sell our house, de-clutter everything, and pack for the move. Oh, and find a rental property. While working full time and hopefully without triggering a massive flare.
I wasn’t prepared for the emotional work involved in decluttering. I luckily am not dealing with hoarding issues or anything like that, but I’m finding that many of the items I’m having to sort through have a lot of memories associated. Many of those memories are not good ones, and more than once I’ve wished I could just pack up the things I want from the house and walk away from the rest of it. Not really an option, though. So I just take breaks when I need to, and lean on the Mister who is being a fantastic partner in all of this.
So sorting/decluttering is happening, but it’s a slow process. I guess if it were easy and quick, I’d have done it before now. We’re probably looking at the move in about 6 weeks, and I think we can actually be done and ready for the movers in that time.
When I sat down to write my surgiversary update, I realized it had been over six months since my last post. I had planned at the first of the year to start posting updates at least weekly, if not more often. The best laid plans, and all that. Spoonie life makes it hard to juggle all the things you want to do. Energy reserves are limited, and even though sitting down and writing a few paragraphs doesn’t seem like it should take that much energy, even just remembering that you were going to do it, or getting up to get the keyboard for the iPad if you manage to remember, sometimes is too much.
I continue to love my job. I have been working on some exciting technology projects to expand healthcare interactions for patients into the digital space, which is super exciting. I also have an opportunity to move into an area of data governance which is actually a personal area of interest, so that will be exciting for me. Most people find it dull and tedious but I’m not most people. Working full-time means I have very little energy left for the rest of my life, and it’s hard reconciling that with my goals and aspirations. But it’s the reality for so many of us Spoonies. I keep reminding myself how lucky I am to be able to work full time and support my family because many Spoonies struggle with the basic necessities and access to healthcare because they can’t work or can’t work full-time.
As much as I wanted my focus word for the year to be “calm” it doesn't appear that is to be my fate for 2019. A few months ago, Hubby and I were vacationing with some very good friends and discussing challenges we’re facing, and it became ridiculously obvious that the answer to many of our challenges is to sell our house and move closer to friends, work, and other interests and rent at least for a few years. This means that we now are throwing ourselves into decluttering, packing, and house repairs so that we can get our house on the market and start looking for a rental in our target area. Not “calm” at all! Calm may be on the other side of this, but it sure isn’t here and now.
Health-wise, things seem to be settling down. (Superstitiously knocking on the nearest wood item available.) I have found a new rheumatologist, and I really like her. She’s young and isn’t blowing off my increased pain with the fibromyalgia. She repeated a lot of lab work that had been done several years ago and not repeated since, and has confirmed that the psoriatic arthritis is indeed still in remission. This is good news, because while I’m still in pain, it means that there’s likely no joint damage being done at this time. She’s given me some things to try to reduce the pain levels, and admonished me to stop avoiding the mild opioids I’ve been prescribed if I need them in order to do the mild exercising we both know I need in order to reduce the fibro pain.
So that's my life right now… working, recovering, working some more, and trying to get the house sorted, packed, and market ready when I can. Hoping to come up for air sometime soon.
To start off, you need to know how horrible yesterday was, and the day before.
Sunday, I woke up hurting in almost all of my joints. My back and neck, both hips, right knee, both wrists and many of my finger joints but most of all my thumbs hurt horribly. There’s not much to do when that much of you hurts, except lie on the couch with heating pads and electric throws and try to amuse yourself. The brain fog was bad enough I couldn’t even really focus on a show with a plot, so I watched a lot of YouTube videos. At one point I put on a documentary series so I could semi-focus on it while I tried to take a nap. (Tip: when you hurt too bad to sleep, some kind of sensory input like a comforting TV show can sometimes distract you enough to sleep though it sounds counter-intuitive.) Napping has the unwelcome effect of making it even harder to get to sleep at a normal bedtime as well, but I risked it because I was just so exhausted from the pain and brain fog.
I was disappointed because I am trying to participate in the NaNoWriMo (National Novel Writing Month) Challenge, and couldn’t manage more than about 600 words over the entire weekend. I haven’t been able to participate in it for years because I was working full time and in school, but now that #gradSchoolSucks is over, I signed up with the hope I might finish it for the first time. Right now, I’m behind by about 9,400 words. I’m not throwing in the towel, but there’s a good chance I won’t make it.
Long-time readers may remember that I had a list of things I wanted to do in 2018 after I was finally done with school. It had fun things like seeing friends more often, taking up belly dance again, learning to swing dance, and hobbies I wanted to take up again. NaNoWriMo was on that list. Most of the other things on my list I’ve had to abandon thanks to my chronic illness. So I'm really disappointed and frankly angry as hell that the one thing I thought I could count on may also fall prey to this damned illness.
Dawn broke yesterday morning and I was hurting even worse than on Sunday. I gave serious consideration to calling in sick. Or working from home, as that’s an option for me with my job. After waffling back and forth for a while, I finally decided to drag myself into the office. I’d called in sick only a couple of weeks ago after a horrific day of out of town meetings combined with a cold front and 4 hours on the road completely drenched and freezing (a WHOLE ‘nother story) threw me into a flare and I woke up the next day virtually unable to move. I don’t want to start being “that employee” and I certainly don’t want my boss to have to take up slack for me related to my chronic issues. I knew as bad as I was feeling that I’d end up dozing on the couch with my laptop for much of the day, and not be productive working from home. So I took a hot shower and drove myself to work.
Normally I am a decent example of “you don’t look sick”. I work at it quite a bit to not put my pain on display and prefer to let most people think I’m doing fine even if I’m not really. Yesterday I apparently didn’t manage it, because more than one coworker asked me if I was feeling okay. I couldn’t even muster the energy to fake it and admitted that I was not having a good day.
I’m proud of myself for dragging myself through the day and being mostly productive. I got home, took pain meds, ate, watched some TV, took more pain meds, and went to bed early hoping that it would be a new day and I would feel better.
No such luck.
My joints didn’t hurt as badly as they did yesterday, so that felt like a win. But I had a bit of a headache brewing when I woke up. It didn’t seem like a migraine, so I popped some Excedrin with my morning meds and got on the road with my protein coffee shake.
About five minutes down the highway, the migraine made itself known. Normally, I don’t get overly nauseated with my migraines, but occasionally I do. This was one of those occasions. I’m driving 60 mph (or more, I plead the 5th on that topic) on an interstate, and I’m having all of the signs that my few swallows of protein shake along with my meds are threatening a rapid return. So fighting back the nausea, I carefully weave my way across three lanes of traffic so I at least have a shoulder available if the threatened return becomes inevitable, while digging by feel in the glove box for an emesis bag and turning the A/C up to high. (Yes, prepared Spoonies - especially nurses - have emesis bags in their cars.). It was a precarious several minutes, and I missed my express lane entrance, but my stomach finally quieted down, and the Excedrin had apparently been just in time because the migraine had disappeared by the time I got to my parking garage. Of course, there’s the “post-drome” aka “migraine hangover” but I’m well experienced with working through those.
I think I managed to hit the “you don’t look sick” bar today, so that’s good. What a lot of people who don’t deal with chronic pain don’t realize is how much it drains you. I’ve also learned that pain in the hands is so much harder to ignore than leg pain. I’ve had my share of injured knees and ankles, and I can prop those up and ignore them. Pain in the hands, though… that’s a doozy. Typing, picking up the phone, holding a pen, picking up the water mug - everything makes the hands hurt worse. Last night I dug out my compression gloves, and while they’re not exactly high fashion, they help with pain and swelling. I wore them most of the day, and alternated menthol patches with my topical prescription anti inflammatory. There’s nothing like smelling like menthol at the office to make you feel ancient, I gotta say.
I ducked out a bit early for an appointment, and hoped it wasn’t obvious I’d bailed a little early two days in a row. Honestly, I work with a bunch of great people and our office is pretty flexible about hours and such. But as a Spoonie, and one fairly new to the job, I worry about appearances.
Now I’m home, and luckily my pain remained constant today and didn’t get out of control, so a normal dose of pain meds should let me get good sleep tonight. Here’s hoping for a better day tomorrow.
I’m not typing all of this out as a whine. Well, not much anyway. I’m sharing all of this as an example of the choices Spoonies have to make every day. If you don’t struggle with chronic illness, or have someone in your life who does, I want to give you a glimpse into the struggle we face.
Those of us with chronic migraine have to try and divine whether this headache needs a triptan, or if there’s a good chance Excedrin or Advil could take care of it. This is because most insurances restrict us to 9 doses of triptan a month, and some migraine attacks take 2 doses to resolve. Also, taking the triptans too often can set us up for “medication overuse” headaches. Despite the other neurological symptoms, despite the pain, we have to weigh if this attack is “bad enough” to treat it with the prescription meds.
When we have other kinds of pain that respond well to opiates, we again consult the crystal ball. Is this pain “bad enough” to take a dose? Doctors are hesitant to prescribe opiates now, so we feel the need to ration what we have. Long term, opiates stop working as well for chronic pain, so that’s in our minds as well. Do I think tonight’s pain is likely to be worse than what I will have next week or next month, or should I try and manage it with things that don’t work as well?
Then there’s the required “pacing” which is a code word for budgeting and reserving our energy so we can do the important stuff. Lately, I’ve had enough energy on a weekend to do ONE thing, and ONE thing only. If I’m scheduled to medic for the roller derby league on a Saturday night, I can’t plan on doing a single other thing that weekend. No grocery shopping trip, no visiting family or friends, no chores around the house. If I simply must do some house cleaning, that’s ALL I can do that weekend, and I’ll likely have to pay for it with the next day being a don’t-leave-the-couch day.
Jobs create another kind of stress and worry. We don’t want to be “that employee” and we don’t want to burden our team by our absence. One of the driving factors for my leaving both ER jobs that I absolutely loved, was that I knew my health was declining and every call out overburdens your team. Many employers are not understanding of frequent time off for illness, and we worry about losing our job and being unable to support our families on top of feeling like we don’t contribute enough to our work team.
Every day when we wake up feeling like death warmed over, we have to try and figure out if it’s bad enough to call out or if we think a worse day might be around the corner and we can’t “burn” a sick day. After all, it’s not like we’re contagious and putting our coworkers at risk. It’s just our own pain we have to deal with, and when pain’s a daily experience, what makes this day enough different to call out? In my case, winter tends to have more frequent migraines and upper respiratory infections. My new migraine preventative medication may make a difference this year, but I won’t know until we get further down the road. I need to reserve my PTO days not only for budget reasons, but to not be “that employee”.
Spoonies like me who are still able to keep working full time walk a tightrope. We’re glad we’re still able to work (many aren’t) and support our families. But many of us also feel we spend all of our off time recovering so we can go back to work, and we lose too much of our personal and family lives. Some days we just can’t make it in, or if we do we’re not at 100% and we feel guilty either way.
So yeah, I’ve had a couple of rough days already this week. I’m hoping the worst is over and the rest of the week will be an upswing. I’ll make it through, either way. After all, I have a 100% record of making it through the day, and that’s something.
Facebook's On This Day reminded me that today is my 2 year Surgiversary.
So much has happened in the last two years. My life hardly resembles that of two years ago, in a good way.
Here's a picture of me also from the general time period before surgery.
It isn't until photos like this show up on my feed that I really realize how big I was. It's always a little breathtaking since even when I was at my highest weight I never really saw myself as that big. It's like I had reverse body dysmorphia.
So here's what I look like now.
Forgive the blur, Im using my new selfie slick and my hand shakes.
Also, I'm on a vacation right now in case you couldn't tell from the hotel background. Check out how much slack I had in my seat belt on the plane!
I was JUST shy of needing a belt extender when I flew the last time before surgery.
I'm not perfect. I still have struggles with food. I don't eat how many WLS "gurus" say I should. I get obsessive about the scale and still sometimes beat myself up about my food choices or weight. I'm not as toned as I'd like to be. Or as active as I know would be better for me.
What I am, is a woman who decided to change her life, and did it. It wasn't easy, but I've held on. I'm 2 years out from gastric sleeve and am maintaining within 10#of my lowest weight. I only feel like I have another 10# I'd like to come off. My medical team is thrilled with how far I've come. I am off my CPAP, off 2 blood pressure meds, and my autoimmune arthritis has been in remission for over a year. While I still fight chronic illness, I'm healthier than I've been in 2 decades.
Not bad, if I do say so myself.
People ask me if I regret having surgery, especially when I complain that I can't eat more of some really delicious food. My answer? Not one iota. My only regret is that I didn't do it years before.
So if you're thinking about having bariatric surgery, and your medical team concurs, count mine as one voice saying "you can do it!"
I have fallen woefully behind in posting updates to this blog. I’m happy to report it’s for the most excellent of reasons.
Shortly after I posted last, I was contacted by a recruiter about a job with a large local hospital network. It took a while to get through the rounds of interviews, get and accept the job offer, and get on-boarded. But it all worked out, and I just finished my third week at my new digs.
I am, as some people say, happy as a pig in slop. (Isn’t that a mental image? LOL) The Mister says he hasn’t seen me this excited and animated about work in a long time. This is exactly the kind of position I dreamed about and worked so hard on my master’s degree for. I feel a bit like Melanie Griffith at the end of Working Girl. Though my new workspace is “Apple-esque” (read: open office concept) instead of an office with a door. Though not my preferred environment, it’s a minor gripe, especially compared to all the awesome things about my new job.
My new group functions as a technology think tank for the network. I’m a program manager, which really means I project manage a bunch of related projects that make up a program. We’re looking into all the ways we can extend care from our physicians and hospitals into the digital space through mobile and web technology and such. It’s really exciting, and though I have a lot to learn about project management, the team is fantastic and incredibly supportive.
So I’ve been learning to navigate downtown Dallas and Central Expressway, and parking downtown means I’m walking almost twice as much for my routine activities than I used to. So of course, my body thinks I’m punishing it, and the fibro is trying to fight back. Most evenings I crash, and right now my weekend activities are limited to one physical or outside the house activity and the rest of the weekend is resting and recuperating to do it all again the next week. I believe I’ll adjust to the increased activity and be able to start doing more things, but I’m listening to my body and resting when I need to so I can be effective at work. The Mister is awesome about looking after dinner and other things that have to be done, which is awesome.
It's a serious and lasting love I've had since I was a teenager.
I grew up in a religious denomination that teaches not to defile your temple (body) with drugs like caffeine. It wasn't a "you're going to hell" prohibition, but it was certainly discouraged. As a result, I didn't learn to like the taste of coffee as a teen or adult. But my parents weren't all that strict about it, so I started drinking sodas with caffeine and had a serious Dr. Pepper addiction starting from about high school forward. It wasn't until I developed some benign cysts and my doctor inquired about my caffeine intake that I had ever even stopped to figure out how much I was drinking most days. (It was a LOT.)
Then came the day I discovered the Frappuccino® from Starbucks. That was heaven in a cup. With whip and drizzle. I was hooked. When I couldn't get Starbucks, I started drinking "regular" coffee with a lot of cream and sugar. Friends have told me I don't really like coffee, since it's not coffee when I'm done with it. It's a chocolate milk concoction with a little coffee in it.
I knew I was addicted. I have chronic migraine, and if I didn't have a good dose of caffeine by noon, I'd have a migraine headache by 3pm. The first neurologist Munchkin saw said that migraineurs self-medicate with caffeine and it can be a good thing. The next neuro she saw griped at both of us coming into his office with Starbucks. (We fired him.) The few times in my life I've tried to detox off of caffeine, it was 2 to 3 weeks of headache and fatigue and prescription doses of ibuprofen 'round the clock.
Nursing school and nurse life did nothing to dissuade me from continuing my caffeine habit. In fact, it's a standing joke that all nursing students have coffee in their veins instead of blood.
Then came my bariatric surgery.
My surgeon doesn't restrict caffeine after the 2nd day post-op, but a lot of people report not being able to tolerate coffee on their newly rearranged stomachs for periods ranging from a few weeks to a few months post-op. Knowing that coffee is pretty rough on the stomach, and since carbonated beverages and ibuprofen are completely prohibited for an extended time post-op, I knew I needed to get off of the caffeine. Withdrawal was not something I wanted to try while recovering from surgery and having a delicate stomach.
So a few weeks before surgery, I started weaning myself off of caffeine. It actually went pretty smoothly, with judicious application of ibuprofen and good migraine meds. By the time the surgery rolled around, I didn't need it anymore. I was "clean" for the first time in decades.
After the surgery, I didn't try coffee for a few months. I tolerated it fine when I did, but there was something freeing about not HAVING to have the caffeine in order to feel well. I also appreciated that since I didn't drink it regularly, when I did indulge in a cup, I got more of a "kick" from it than I had when I was drinking it multiple times a day. I decided I'd just continue with most days not having any caffeine.
Unfortunately, I'm also a Spoonie. Multiple chronic illnesses, most of them with symptoms of extreme fatigue and brain fog, cause me to struggle to get through many days. I started having occasional sugar-free caffeinated sodas with lunch. Then it became a daily thing. (Yes, my sleeve lets me have carbonation if I don't drink it too quickly.) A couple of weekends ago, I was feeling particularly sluggish and decided to get a soda. It picked me up so well that I had coffee the next morning and I had another really good day energy-wise.
I was faced with the choice of inviting my coffee monkey to climb right back up on my back or staying true to being "clean" and forcing myself to push through days without any support.
(Most people probably don't think about this kind of thing to the extent I do. It's one of my charms.)
I looked at myself in the mirror and said, "Screw it." Then I made myself a cup of coffee. Lots of creamer, monk fruit sweetener (that stuff is AWESOME).
Since we're starting to have warm weather here in Texas, I tried some cold brew coffee in cold milk with chocolate. YUMMY! That's my new morning staple until it gets cold again.
This past weekend, I forgot to get coffee when I got up Sunday morning, as the habit is not yet ingrained. Around 2pm I was trying to figure out why I felt so groggy and headache-y. I went to grab some food from the fridge and saw my bottle of cold brew and the light bulb went off. Got myself some coffee and felt better within the hour. (Yes, I'm a dork sometimes.)
Part of me felt bad that I'd succumbed to my addiction again after being well and truly free of it.
The part of me that loves my coffee knocked the other part into a coma and suggested we stop at Starbucks on the way home.
Dr. Young made the point that a condition is fundamentally different than a disease, and migraine is so much more than a headache. By using words like "migraines" or "migraine headache" we change the perception for ourselves and others and minimize a serious neurological disease. Also, using the term migraineur reduces the person to their illness much in the way the terms epileptic or schizophrenic do.
It's more than political correctness, it's about the perception these words create. I've used the term migraineur for years. Like other labels, it's simple and concise. I like simple and concise language, and have always resented political correctness being thrust upon me and my choice of language. However it's important for me to recognize the impact of the words I choose. This is like choosing to say rheumatoid disease instead of rheumatoid arthritis or psoriatic arthritis. The word arthritis dilutes the full impact and implication of rheumatoid disease.
Incidentally, I'm not trying to tell my readers or anyone else what words they should or shouldn't use. I'm just offering some food for thought, and offering an opportunity to think about the language you choose to use.
Part of my challenge in processing this is that I still tend to not think of migraine as the neurological disease and disability that it is. It's been just another fact in my life since I was a teenager. It runs in our family - my sister, nephews, and daughter all have it. Sis and I suspect our Mom has it based on our observations (though Mom disagrees).
I've written before that I never considered myself to have chronic illness until my rheumatoid disease was diagnosed. As I became more educated on the subject of chronic illness, I realized that I've lived with multiple chronic illnesses for most of my life. While my asthma is fully controlled with medication, I still have to make decisions in order to keep from having an attack. I cannot exercise in cold air without a mask, I cannot go to smoky environments, and I have to exercise caution when dusting or cleaning, and I can't go to concerts (second hand marijuana smoke has forced me to leave too many concerts early). I've had migraine attacks since my late teens, and it's affected my life to varying degrees ever since. Rheumatoid disease and fibromyalgia are just the two latest entries to my list.
So while I was still digesting and processing the information from Dr. Young's article, I watched the film Unrest (https://www.unrest.film/) and it reduced me to tears. It's available on Netflix and other streaming media. If you or anyone you love deals with chronic illness, I highly recommend that you watch this film, though I will warn you in advance it is hard stuff. It chronicles Jennifer Brea's experience with Myalgic Encephalomyelitis (ME) which has been associated with chronic fatigue syndrome. (Note: this association is disputed by some ME researchers.)
While the film is specifically about ME which I do not have, so many of the themes struck home with me, as I believe they do with all people who have chronic illness. People not believing us when we share our symptoms and struggles. Doctors telling us it's a mental condition (and even prescribing depression medication). Fighting to get referrals to specialists or specific testing. Feelings of guilt from placing burdens on our family and friends because of our illness, and of not "pulling our own weight". Relief when we finally get a diagnosis, even if it's incurable, because it means there's tangible proof finally. Grieving the person you once were and can never be again. Worrying about missing too many days of work, or not being productive when we drag ourselves in. Wondering if you will ever have a pain-free day again.
I've had to catch myself several times while typing out these paragraphs, as I tend to write that people "suffer" from chronic illness. This is yet again one of those words that changes perceptions. Certainly there is suffering that goes along with chronic illness. For some of us, it's intermittent. For others, it's fairly non-stop. But the term is passive, it's being subjected to something. It's like using the phrase "victim of" and while some people use it, others hate it. I don't embrace being a victim, even though the legal term applies. Similarly, I don't embrace suffering from anything. I prefer more active terms. I survived abuse, I fight chronic illness. It's also important to recognize that some people don't like the active verbs, either, and find being labeled a "fighter" or a "warrior" demeaning. Dr. Young probably offered the best advice, in that we can use any term we want when relating our own experience, but we should try to avoid applying labels to other people as only they define their experience.
The biggest word I struggle with, however, is "disability". When I think of someone with a disability, I think of wheelchairs, canes, severe impairment of a sensory system like sight or hearing, or like some of the people in Unrest essentially being bedridden. I have a strong aversion to calling myself disabled or saying that I have a disability. Part of my resistance is because I don't want to minimize what those with the more severe impairments deal with. I am still able to hold down a full-time job. I recently finished a master's program while continuing to work full-time. That doesn't fit the picture in my head of someone with a disability. Never mind that while doing that, I was completely unable to keep up with even minimal housework or cooking, and every weekend was spent recuperating from the week before. Part of it may be a fear that someday the impact on my daily life will be much more severe.
Perhaps the other thing about words is that while they can change perception, we can maybe create a change in how certain words affect us and others by changing the dialog around them. Especially when dealing with hidden or invisible disabilities, talking more about them and how disability is on a continuum can change how we and others see the concept.
There's one word I won't give up, though. Spoonie. The story by Christine Miserandino (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) in which she explains to a friend what it feels like to have lupus has given all of us who deal with chronic illness a touchpoint around which we have built communities of support for each other. It gives us a shorthand to use with each other and our allies. It might be reductive, but for me it's an identity within a community and that's an important thing to have, especially when you have a chronic illness.