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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...

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.