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The Loneliness of Chronic Illness

No man is an island... unless that man is chronically ill.  Chronic illness makes islands of all its victims.  Y'know that feeling eve...

Sunday, May 5, 2019

Chronic Pain, Explained


To people who don’t understand chronic pain:

What a lot of people don’t understand about chronic pain is that it’s unrelenting. 24/7 365 days per year, we are in pain. Even when we’re smiling, even when we’re sleeping. There is no end.  and that takes a physical and emotional toll. 

Think about how frustrated you are when you stub your toe, or how miffed you get when you put hand sanitizer on a paper cut.  Think about how you’re constantly aware of and irritated by a canker sore or a hang nail. 

Now consider this: the amount of pain we are in on a daily basis would put you in the emergency room, no question. We have no concept of what a zero on the pain scale feels like anymore.  We’re lucky if we get down to a 3, and even then, our 3 is your 6, and our 6 is your 9.  We live our lives as functionally as possible in an amount of pain with which you would not be able to function. 

A lot of the examples I used earlier are singular injuries, however most people who suffer from chronic pain suffer from multiple illnesses that all cause their own specific, constant pain.  So imagine deep paper cuts on every finger, along with 5 canker sores in your mouth, 2 stubbed big toes, and 10 hangnails…. and you know none of them will ever heal.  

You’d think you would get used to the pain but you never really do.  You can get used to the idea of being in pain, and the idea of trying to function as best you can while in pain, but you never get used to the pain itself.  Especially because the body likes to switch it up, so every day you wake up not knowing which of your conditions will cause the most pain.  Some days the “hang nails” are more excruciating than the “stubbed toes,” and the next day the “paper cuts” make you want to crawl out of your skin.

I personally have multiple diagnoses that cause me pain.  I have had a constant headache for the last 3 years.  I have horrible nerve pain from the waist down that doesn’t respond to medication and oftentimes renders me unable to walk. I have Gastroparesis, which causes food to sit in my stomach for hours and hours on end, making me feel like I swallowed a boulder.  I have joints that partially dislocate whenever they please.  Thanks to EDS, oftentimes I will wake up with both of my hips partially dislocated and my muscles seized up so tightly around them that I am unable to put them back into place until my muscle relaxer kicks in, which can take hours. I have Endometriosis, a disease in which tissue similar to endometrium grows outside the uterus, and whenever I have a period I bleed internally. I have Autonomic Neuropathy and POTS, both of which contribute to my head and leg pain.  I wake up every day not knowing which of these illnesses will cause me the most pain.  None of these conditions will ever go away.  This is my reality every minute of every day. 

As I hope you can see, this is far beyond the paper cut analogy. It’s infuriating and exhausting, disheartening and stifling, agonizing and all-encompassing.  Please keep this in mind and be patient with us.

Wednesday, April 24, 2019

Health Update: Nov 2018-Jan 2019

At the end of last year, after almost 3 years of chronic illness, I managed to get 3 new diagnoses in 3 months.

It all started in November.  My fancy USC neurologist ordered a repeat skin biopsy, and a tilt table test.  My first skin biopsy, taken over a year prior, had come back clear, so I didn't expect this new one to yield any results.  This skin biopsy, however, came back positive for Small Fiber Neuropathy, something I had been convinced I had since the early days of my chronic illness.  Seriously I knew I had this disease all the way back at the beginning and no one listened to me.  It didn't help that the last biopsy came back negative but apparently there can be false negatives which would have been awesome to know at the time.

Then came the tilt table test. For those who don't know, a TTT is a test in which you lay flat on a table, your vitals are taken, then the table itself moves into an upright position and your vitals are monitored for like 45 minutes.  The test is used to test for functional conditions of the heart.  In a normal person, the body adjusts when you go from sitting to standing.  The heart rate rises slightly then returns to normal, and blood pressure does the opposite (dips slightly then returns to normal.) In someone with a functional heart condition, their heart rate rises upon standing, and continues to rise which makes the body act as though it's running on a treadmill.  Anyway, I got this test and sure enough my body acted like I was sprinting, and I was diagnosed with Postural Orthostatic Tachycardia Syndrome.

I had been having joint problems for a while.  My joints were painful at times and felt very unstable.  In November, my joint issues reached a peak when my ribs began subluxating (aka partially dislocating) when I hiccuped.  This had happened to my knees before but they had always slid back into place quickly and on their own.  My ribs, on the other hand, stayed out of place because the muscles around them seized up.  Whenever my ribs went out (which was often over the next few months), I was pretty much immobile.  So in January I talked to my rheumatologist about it and turns out he thought that I had already been diagnosed with Ehlers Danlos Syndrome, which I had not been.  So once we cleared that misunderstanding up he actually tested me and diagnosed me with it.  EDS is an illness in which the connective tissue/"glue" that holds the body together doesn't work, leading to unstable joints and, well, unstable everything else.  So in my case we believe that when Lupron destroyed my Autonomic Nervous System and peripheral nerves, it also destroyed my connective tissue.

All of these illnesses are a bummer but it's not like the illnesses themselves are new to me.  I've been dealing with all of these for a very long time and the only new aspect is the validation that there are names to go with my symptoms.

That's all for this update, I'll write a more recent update about my port and everything at another time :)

Thursday, April 11, 2019

How Chronic Illness Has Empowered Me

For the first year and a half of my chronic illness journey, I did everything I could to keep my illness a secret.  I thought that if I could just get a diagnosis I could get better, get back on track with my life, and no one had to know I was ever sick.  I spent that whole year and a half planning out how I was going to reorganize my future after I bounced back from what I thought was just a momentary setback.  I mapped out my college education so that I could still graduate the year I was supposed to, I continuously messaged my old boss telling her I just needed a few more months off in order to get better, and I mentally changed my desired career path at least 10 times.  I was so ashamed of dropping out of college that I tried to take one online class per semester, just so I could say I was studying something.  I did everything I could in an attempt to hold on to some sense of normalcy.  I was in denial about the decline of my body, and in my mind, the worst case scenario was people finding out about my illness, and judging me for it.

Growing up, I had never experienced a situation in which sickness was incurable and chronic.  All I ever knew was that if you get sick, you go to the doctor, and you get better.  That's all society taught me.  So when my personal experience didn't line up with that, I saw my situation as abnormal and unnatural.  It certainly didn't help that my doctors were telling me it was in all in my head.

After a year and a half, it finally became evident to me that I was not going to get better.  Not all the way better at least.  Not "better enough."  I slowly began to come to terms with the reality of my situation.  I realized that my life could never be the same as it was before I fell ill, and this realization was absolutely devastating.  I was only 19 and my entire future hung in limbo.  Everything was completely out of my control, and I was at the mercy of my illnesses.  I began to understand that if I didn't adjust my way of thinking (which was the one thing I had a semblance of control over), I was going to be miserable for the rest of my life.

I essentially had become too ill to care what people thought anymore.  I reached a point where I simply had bigger things to worry about than hiding such a huge part of my life.  I had been making myself miserable for a reason that no longer seemed worth it.  So I began telling everyone about my illness.  I shared my life story with anyone who would listen.  I refused to continue feeling ashamed of how far I had fallen, and I became proud of my strength in what I had been enduring.  Perhaps that's a silver lining in chronic illness.  Your priorities end up changing for the better.  You learn to put your mental health above the opinions of others.   

Once I started living my truth and being open and honest about all of my experiences, my mental health improved significantly.  I felt free of the pressure of needing to be liked.  I felt free to be my authentic self.  Chronic illness breaks us down in such a way that the strength we exhibit in getting back up is nothing short of admirable.  I possessed so much more strength than I ever thought possible, and I began to take pride in that.  As my illness continuously tore me down, I always found a way to build myself back up.  I relinquished control of my body and learned to take control of my mindset.

Chronic illness is certainly destructive, but through it we come to recognize the power that lies within ourselves.  Now, instead of blaming myself for what I haven't accomplished, I feel empowered by what I have overcome. 

Monday, April 1, 2019

Dating While Chronically Ill

Dating with a chronic illness is difficult, but not impossible.  Obviously the first hurdle we face is meeting someone.  Most of us spend limited time outside of our homes, and that time is spent going to appointments, possibly working, running errands, and using up all our energy trying to act like normal human beings and get home before our bodies completely shut down.  When we go out, the last thing on our minds is meeting new people.  

Online dating is a decent way to go about it, but it’s risky.  There are a lot of horny weirdos on dating sites and honestly, sometimes I lack the emotional energy to deal with these idiots.  My recommendation is to stay as far away from Tinder as possible.  My go-to dating app is Bumble because women have to message first.  I’ve also been on Hinge for a while and it’s pretty ok.  For now, let’s just imagine we somehow manage find a decent human on the internet.  Over a span of 5-15 business days we’ve vetted them, stalked their social media, and we’ve decided that the chance of being kidnapped or murdered is low enough to risk a date.  Now what?

Well, that depends a lot on your personal illness situation and comfort level.  If you’re like me and you bring up your illness to anyone and everyone you meet, and assuming the person you’re interested in isn’t a total horse’s ass about it, you can suggest a time and place to meet.  If you’re not like me and you wanna keep your illness to yourself, all power to ya. you do you, boo.  Regardless of how open we are about our illness, the illness itself will inevitably affect the date.  Unlike able-bodied people, we have to strategize everything.  We have to schedule the date for a day that has nothing else planned around it.  Gotta make sure we do nothing the day before, to save our energy, then plan to do nothing the day after, because we’ll feel like death.  Then, we have to try to schedule it for a time of day when *hopefully* our symptoms aren’t too high.  For example, my symptoms are much worse in the evening than in the morning.  Morning dates aren’t socially considered all that sexy but I’ve got to work with the cards I’ve been dealt.  Then we have to choose a location that is accessible (close parking, no stairs, has food you can eat/drinks you can drink, yadayadayada etc).  

After all that we have to hope and pray and cross all our fingers and toes that by some miracle our bodies behave themselves on the scheduled day.  Of course, the best laid plans of mice and men oft go to shit, and I have had to cancel multiple dates due to my body being its unreliable self.  Canceling a date for health reasons is actually a great test of character because if the other person is an asshole about it, you’ve just saved yourself a ton of time and energy which is awesome cuz we don't have time or energy to spare.  However, if they’re nice, then maybe the date is worth rescheduling once your body is feeling a bit better.  Alright I’m 4 paragraphs in and I haven’t even gotten past a first date scenario.  In my opinion, casual dating while chronically ill is one thing, and relationships are another.  With casual dating there are little to no stakes (y’know aside from a worst case scenario kidnap/murder situation).  If you just don’t feel up to going out or to talking to people anymore you literally don’t have to.  Ghosting and blocking people is super duper fun and I 10/10 recommend it.  Relationships, however, are a whole other (more complicated) ballgame that I’ll write a different blog post about at another time in the interest of length and clarity.

Wednesday, March 6, 2019

The Loneliness of Chronic Illness

No man is an island... unless that man is chronically ill.  Chronic illness makes islands of all its victims. 

Y'know that feeling everyone has as a teenager? That "no one understands me" feeling.  Take that and multiply it by a million and that's chronic illness.  At least when dealing with teenagers, people have a point of reference, since they were once teenaged themselves.  The same can't be said about chronic illness.  With chronic illness you don't get it 'til you literally get it.

I'm going to be honest here, I don't know how to cope with the loneliness that accompanies chronic illness.  It is so gut-wrenching and all-encompassing.  It's not just the literal state of being alone, either.  Along with the physical solitude comes the mental.  I could be in a room full of people and still feel utterly and hopelessly alone, because everyone in the room is able to function so seamlessly while I'm trapped in a cage of my unreliable body's making. 

Despite our most valiant efforts, time will not stand still for us; so our friends and family move on without us.  And we've got no choice but to watch them go.  Those closest to us often claim to understand.  They see us being left behind and they feel badly for us.  Some grasp at straws to try to empathize, but it's impossible to grasp the totality of the loneliness without truly being in our shoes.  There's no way to fully comprehend the utter devastation of chronic illness.  It destroys everything in its wake, and we're left shakily holding on to the memory of who we once were, the friends and family we once had, the life we once led. We grieve the potential we lost.

For someone who's constantly treading emotional water in an attempt not to drown in my sorrows, I hold myself together quite well for the most part.  I put on the bravest of faces and act like it's no big deal.  It's fine my family is going out of town without me.  I'm happy for my friends who are surpassing life's biggest milestones.  I joke about how my life is in shambles, all my plans fall through, I can't do the things I love anymore.  I say "thank God I'm an introvert because I spend 90% of my time alone" and "isn't it funny how before we moved here, I complained how much I despised this house, and now I spend the most time here out of anyone." I must laugh or I will cry, and if I start crying I don't know when or if I'll ever stop.

There is some hope, however, because there are other chronically ill people out there.  Other lonely people whose experiences resemble my own.  I have not met any in real life, but the internet is a wonderful thing that has allowed me to forge deep, meaningful friendships with people who truly do get it.  People who know how I feel because they have been through it themselves.  Sometimes it's just nice to have someone to be lonely with.



Friday, March 1, 2019

My Gastric Pacemaker Experience

Hey I'm Kayla and March 1, 2018, I received my Gastric Pacemaker/Neurostimulator, so it seems only fitting that I write a post today, in celebration of it's first birthday.



Back in the middle of 2017, I began to lose a ton of weight very very quickly.  Within 5 months, I had lost 1/4th of my body weight.  I was unable to eat without extreme pain or nausea, and I had gotten to the point where I could barely even stomach liquids.  Fortunately, I was able to get proper testing relatively quickly and I was diagnosed with Gastroparesis, which translates to stomach paralysis, for those who don't know.  Basically, the stomach is a muscle that contracts/pumps in order to move food through, and my stomach muscle stopped pumping.  I ended up being referred to a surgeon in the Gastroparesis Institute at USC, and he laid out my options.  I had the option to start treatment less aggressively (ie Botox injections in my stomach, which have a very low success rate), or I could look at my surgical options which included the Gastric Pacer and/or a pyloroplasty (permanently opening up the hole that the food empties through from the stomach to the duodenum).  Due to the rate I was losing weight, I knew that if I attempted Botox and it didn't work, I would end up needing a feeding tube, which was something that I personally wanted to avoid at all costs.  My doctor had told me that he had recently been performing Gastric Pacemaker implantations AND pyloroplasties in the same surgery on some patients, and he had been seeing better results from them than from patients who received only one or the other.  Based on my case (and the fact that I'd rather have one surgery than multiple), we decided to do the Gastric Pacemaker and the pyloroplasty together.  I have never once regretted this decision.



The surgery took a total of 4 hours, and I was in the hospital for 2 days and 2 nights total.  For some, it would have been an outpatient procedure, but due to my ever-growing list of chronic illnesses, we decided it'd be best for me to at least stay for one night.  Those first 48 hours after surgery SUCKED. I mean holy shit the pacemaker was HEAVY (the weight of 2 golf balls) which meant it was painful as hell and super hard to get adjusted to.  Not to mention that when I get anesthesia I can't pee afterwards because my body is ridiculous so I had to beg for 2 catheters (honestly when a hospital makes you beg to pee, they're doin something wrong but I digress).  And in the hospital, I unfortunately broke my 12 year no-vomit record.  I literally hadn't barfed since I was 8 years old then some jackass gave me an anti-inflammatory that my body did NOT like and the record was gone :(



Once, I was stable and released from the hospital, recovery was easy enough.  Lots of resting and netflix, which wasn't out of the ordinary for me.  I became adjusted to the weight of the pacemaker so I don't notice it anymore.  It took about 5 months to get the settings on the pacer adjusted to where I could eat a somewhat normal amount, but I actually started gaining weight back within a month of the surgery.  One year later and I have gained 11 pounds back and am no longer underweight!  In terms of eating I have 2-4 good weeks, and then 2-4 flare weeks, which is to be expected because I still have Gastroparesis.

All in all I am beyond grateful for my pacemaker and everything it has done for me.

Tuesday, January 22, 2019

Doctor Horror Stories


Hi I'm Kayla and I've been fucked around by the healthcare industry for three years.

I've been to a plethora of shitty doctors, and today I am going to share my doctor horror stories with you, the general public, in the hopes of perhaps making you feel less alone as you navigate the clusterfuck that is the medical field.

I haven't calculated the total number of doctors I've seen (because ew math) but it's definitely upwards of 30. Here are the worst of the worst:

1. My First Neurologist: spat out a few classics such as "It's all in your head" and "I can't help you," along with "You need to find someone smarter than me." Then he shoved me out the door with no referrals or direction of any kind.

2. My Second Primary Care Physician: She seemed chill until I wasn't diagnosed with MS (she reaaaaally wanted me to have MS for some reason).  She then told my pain management doctor that she'd prescribe me the meds I needed, only to ambush me with an intervention.  Lady flat out accused me of being a drug addict.  If I were a drug addict, I'd be the worst one ever because what junkie brings their mom to doctors appointments when they beg for drugs? She got yelled at by me and my mom.

3. My First Physical Therapist: Fell asleep in the middle of my appointment......... Yup....... 'Nuff said.

4. My Second Neurologist: "You're too pretty to be sick", "You'll continue to improve", "Stop seeing doctors, you're wasting everyone's time", "I'd tell my own daughter the same thing." I feel bad for his daughter.

5. My Second Pain Management Doc: He made me cry, then smacked me on the leg as some sort of weird attempt to comfort me (which made me scream because NERVE PAIN) then he yelled "well how was I sposta know that would hurt?!" To which my mother and I yelled in unison, "YOU'RE THE PAIN MANAGEMENT DOCTOR!"

6. My First Cardiologist: Literally told my mother to shut up. He got yelled at by me.

7. My Second Cardiologist: Was 2.5 hours late for all his appointments, the waiting room was full, whenever the door from the waiting room opened, I saw him texting in the hallway. His nurses had to apologize for him.

8. My Fourth Neurologist's colleague: During the most painful procedure of my life she had the audacity to say "I know it's annoying." She got yelled at by me.

9. My Fourth Neurologist: Never knew what the fuck was going on.  Also his office sucked so he gets negative points.

10. My First Psychiatrist: put me on a med that turned me into a zombie (where my Klonopin homies at?) then scoffed and told my mother "Well I can take her off the med but she'll probably kill herself. That came outta fuckin left field cuz I had never been suicidal... fun!

Honorable mention
My First Gynecologist: gave me the drug that ruined my entire body, then put me on a birth control that sucked.

Here's my advice: don't ever get sick.  It is not worth the trouble.