Monday, February 29, 2016

...but, you don't look sick?

The famous phrase that I hear from so many people... those 5 words have literally made me question my sanity, self-worth and every single decision I make of every single day. A few months ago I read an amazing article on by Christine Miserandino (I linked it HERE, check it out!) This simple explanation of a day in the life with chronic illness hit home for me. It is so hard to explain, I've struggled for years and she nailed it!! While I don't have Lupus, that I know of...yet; every day is a battle. I feel terrible that I can't muster the strength to go out with friends. I know that people get sick of asking and me saying "no", but how do I explain I need to have an honest conversation with myself to decide if I can get home from work safely and then go straight to bed because my body is wrecked and my brain is no longer connected to it. Some days I literally have to choose between taking a shower and eating dinner because I don't have the energy to do both. There are days that I hurt so much that getting dressed is painful and "putting my clothes on hurts me" isn't really a viable reason to call in sick. So rather than try to explain it all; I avoid the guilt and the shame of telling people how sick I am and I power through life. I smile and laugh, I do my best to follow along with conversation; even though sometimes I get lost because it's hard to think, I keep myself busy with helping others so I don't have time to worry about myself.

I'm openly writing this because I know that there are others other there just like me. This year I was gifted the most incredible thing; someone paid my tuition to attend a Semester of Living Brave; a compilation of 2 courses that are taught by Brene Brown; it's changed my life. For that I am eternally grateful. First of all, accepting gifts is incredibly difficult for me. I don't mean that in the sense that your mother says; "no... I don't want a birthday gift...". Accepting a gift to me is almost painful, I am so much a giver that when I receive something for no reason other than "because" I struggle to process it; even though this is pretty much the mantra of my life. That is another story for another time. Anyhow, to cycle back to my point... Brene Brown has made me take a look at things an realize that my coping mechanisms are flawed at best and downright terrible if were truly being honest with each other.

To quote Brene Brown- Vulnerability is the last thing I want you to see in me, but the first thing I look for in you. - Daring Greatly

As I have mentioned before, I'm a perfectionist. My entire belief system is founded on avoiding shame and judgement by creating the perception that I am a superhero... Here lately I have either been a terrible illusionist or I'm finally figuring out that like all artwork; beauty is found in imperfections. While I have spent years as a personal coach and I've done a few motivational speaking events, I struggle with letting my guard down and being vulnerable. In my "year of yes" I'm letting down the shields and practicing the Japanese art of Kintsugi;the art of fixing broken pottery with gold, thus making the damage part of the beauty of the piece. I'm pretty good at getting others to see beauty in their "cracks"; it's time for me to see my own.

Let me back up this bus for you, it will help... I promise. You see, I've always been "sick". I was sick all the time as a kid and as a teenager. I thought for sure that I would "grow out of it" or something, I waited not so patiently and that day never came. I feel bad for my parents, I know they did the best they could with me, but no one is prepared for a kid that is sick ALL. THE. TIME. I grew up in a home of: you're not bleeding; you're fine, suck it up, tough it out, you're going to school unless you're vomiting, take some Tylenol; you'll be okay... there were colds, flues, strep throat, migraines, generalized body aches & pains- but invisible illness was not still not an acceptable answer. They were entirely out of their element. This is where I honed my "brave face" skills.

When my diagnosis of Endometriosis came in at 17, I felt this sense of relief; like I was finally validated in feeling miserable there was an actual name of my oppressor to curse. I started the battle with medication, alternative diets, pain management, surgeries... you name it and I tried it. Finally, around 19 they decided that I really didn't have a chance at having my own children, yet they still wouldn't take out the damaged, pain inducing organs.... because "someday I might change my mind..." Change it to what, exactly?...put on the brave face, power through the pain... don't let them see you sweat.

Through all of this I was also diagnosed with Cervical Cancer at 19. I was lucky, they caught it early. I had a surgery, took a couple of weeks off work and school, a round of antibiotics and some pain meds later, I came back from Spring Break with half a cervix when everyone else came back with a tan, tattoo and hangover....put on the brave face, power through the pain... don't let them see you sweat.

Ever persistent; Endometriosis was a 14 year, all-out battle of good and evil, daily pain, misery and torment that finally resulted in me finding a doctor that agreed I needed a hysterectomy. While this dramatically changed my life for the better it also opened up the door to all of my other "sick". I developed an infection because my stitches didn't dissolve properly, was treated with antibiotics, and then my broken shell manifested a glorious C-Diff infection that reared it's ugly head on me for over 6 months...I was weak, so weak that I struggled with everything. I weighed less than 100lbs (which is insane for my 5'5" athletic frame) and the whole time I put on my brave face and battled through. I worked; when I was allowed by doctors, I moved to a new state, I got divorced and I never let 'em see I was literally dying. ...put on the brave face, power through the pain... don't let them see you sweat.

It took me 2 years to get my body back and it was a hard fought victory to have some incredible boudoir photos taken of me for my 30th birthday. I was finally in love with myself. I marveled at the strength my body had; the trials it had endured and I wore my battle scars with honor. I was ready to talk about what I had been through... and I did.

...and then I got shot down with disbelief. I'm sure that you're noticing a pattern by now. Invisible Illness wasn't a viable answer in my life. Instead I was feeling incredibly shameful because I was feeling weak. Telling people about my symptoms always came back with the same response "...but, you don't look sick?" which made me question whether I was actually sick. "You're always so positive" they said, "there's no way that you are that sick" they said. So, I stopped talking about it and I did the only thing I knew how ...put on the brave face, power through the pain... don't let them see you sweat.

This last battle started in January of 2014. I got pneumonia and it kicked my butt... I did my best to slow myself down but, I worked 2 jobs for a reason and I was out of vacation time. I kept a low profile and tried to recuperate... I felt like I just wasn't getting better. After my realization at 30 that "I have endured so much, I need to talk about it" I felt like I needed to let the wall down with my new partner... this in and of itself was exponentially huge and wrought with inner battles of "shhh don't tell him that... he won't want you if you're broken... he's going to leave and find a healthy girl"..My amazing partner (that just so happens to work in health care) instead suggested I go to see a sleep specialist because I was SO.DANG. TIRED.  Turns out, I have Narcolepsy. I started medicine to manage my symptoms and was feeling pretty good. Of course there are good days and bad days. Some days I can't get out of bed and others I can run 13 miles... the terrible part; I never know from one day to the next how it's going to turn out. ...put on the brave face, power through the pain... don't let them see you sweat.

The fall of 2014 brought on a sinus infection that wouldn't go away, for Christmas I got a kidney stone and kidney infection which gifted me the knowledge of yet another antibiotic I am allergic to, an upper respiratory infection, an ear infection, another course of antibiotics, 2 weeks of steroids and bed rest... all I was missing was the effing partridge in the pear tree! It took a few months to recover from all of that fun. During all of this I started experiencing intermittent bouts of skipped heartbeats, chest pain and dizziness. ...put on the brave face, power through the pain... don't let them see you sweat.

By June I was full on sick again. This time I thought for sure it was Strep Throat. I also had a lump in my breast. I went into the doctor to have both concerns addressed. Luckily the sore throat turned out to be a virus. I immediately went to see a specialist about the lump and within 2 weeks I had surgery scheduled. A little insight into my coping mechanism- I organized a volunteer event for my non-profit to participate in about 4 days before the surgery, 2 days before the surgery I drove to Portland to watch my partner finish the epic Seattle to Portland bike trip, 3 days after the surgery we hosted out of town guests, 7 days later I was back at work... with a 101 degree fever. Medical would only clear me to go back to work if I promised to see my doctor within 24 hours to be looked at- and so begins the next 7 months... Thankfully, the lump turned out to be a benign fibroadenoma, I might get more, they might not be benign the next time...put on the brave face, power through the pain... don't let them see you sweat.

One would think that for someone that gets sick all the time I must go to the doctor a lot. WRONG. I have a deep seeded mistrust for doctors. Doctors don't like things they can't label, things that a pill won't take care of or things that aren't easy to find. Case in point- I've had mono 3 separate times; each a new infection. When you go to the doctor and tell them you have Mono AGAIN they get a little twitchy and defensive. They give you a big lecture about how people can only get Mono once because of an anti-body that we produce in the first week of the infection. The virus may reactivate on occasion, but you can't contract it again. WRONG. My body doesn't produce that anti-body, which I found out the second time I had it via an Infectious Disease Specialist- doctors never believe me though. That automatic dismissal is why I have learned to operate at a standard level of sick all the time. Why should I go if they don't believe me?

In the last 7 months I have been dismissed by 5 well respected physicians. I've had the following conversations:
Doctor 1: I think you have Chronic Hepatitis.
Me: How does one get that?
Doctor: Well, an at risk lifestyle; multiple sex partners or from recreational drugs.
Me: Ummmm, I'm an athlete, I don't do drugs and I don't sleep around. Plus my partner works at the hospital and is regularly tested... I don't think that sounds like me.
Doctor: Yeah, *laugh* I hear that a lot...I will order the tests.

Doctor 2:I think that you just need to focus your energy on thinking you feel better, not thinking you are sick.
Me: Are you telling me that this is psychosomatic or do you just think I'm a hypochondriac?
Doctor: Well, I can't find anything medically wrong with you. I think Antidepressants would help you.
Me: You know that I went to school to be a Clinical Psychologist, right? The only thing I'm depressed about is your quality of care.

Doctor 3:I don't know what else to test you for. I can't find anything wrong with you.
Me: What's my next step then?
Doctor: I don't know, I'm not sure there is anything to find. You can come into the office to talk about it if you want.
Me: No thanks, I will find the doctor that can find the answers.

Doctor 4: How did you even get this appointment? I don't see a referral here.
Me: I called and scheduled it.
Doctor: Why? I've seen your chart, I don't think we are going to find anything here.
My Partner: Seriously, you're going to just dismiss her like that? You're not even listening to what she has to say.
Doctor: Well I guess if you're really insisting we can do some more tests, but I don't think we are going to find anything serious.

Doctor 5: Why are you here? *puts finger up in the "hold on" gesture, then answers personal cell phone call in the middle of my sentence*
Me: I was referred here by my Naturopath because of my recent test results, and the cardiologist I saw this morning also thinks its a good idea.
Doctor: The disease they are referring you for is extremely rare, I don't think we're going to find that.
Me: So the fact that I am exhibiting almost all of the symptoms and I am a runner that can't walk up a flight of stairs combined with two rounds of testing is insignificant?
Doctor: Well if it makes you feel any better, I can re-do all of the tests.
Me: You mean the ones that I had less than a month ago? Yeah, no thanks.

My daily list of symptoms: 
  • increased blood pressure- regular is 100/70 and I'm pretty frequently over 130/80.. in fact, I just got a prescription for beta-blockers... the things that people with hypertension take to stop their hear from exploding out of their chests. Fun fact about beta blockers; if you have regularly low blood pressure and your insanely high intermittent suddenly drops back to normal after you take one you feel equally as crappy on the opposite end of the spectrum. Neat, huh?
  • random bouts of tachycardia- were talking heart rate over 120 bpm, regular is around 55-60
  • extreme fatigue- I come home and go to be at 4:30pm 1-2 nights per week
  • weight loss- since this spring I have lost nearly 30lbs- mostly by sitting on my ass because I'm too tired for anything else, partly because I have no appetite and everything I eat very rapidly comes out of my body in one form or another... yeah, it's not sexy.
  • my hair is falling out
  • my skin is dry
  • daily pain that could stop an elephant
  • I have headaches caused from: blood pressure, hormones, dehydration, sleep deprivation
  • oh yeah, I have Narcolepsy and can't sleep!! WTF? When your heart is constantly racing out of your chest like you're running from a heard of stampeding wildebeests (yep, just like the Lion King) it's really dang hard to fall asleep or stay asleep. 
  • I can't think- you know when you have had a few too many drinks or your kids wake you in the middle of the night and you struggle to form a sentence or can't understand simple sentences spoken to you... that's all day, every day for me. I think that this is the most frustrating aspect of this invisible illness; I have a degree in English, I am generally well spoken and articulate- remember above when I said I I was a perfectionist... well it's taken me 2 weeks to write this because I struggle to form coherent sentences with correct spelling. 
What I've been tested for:
  • Mono
  • Hepatitis
  • Pulmonary Embolism
  • Endocarditis
  • Hypothyroidism
  • Hyperthyroidism
  • Malaria
  • Liver Failure
  • Congestive Heart Failure
  • Early Menopause
  • Immunoglobulin Deficiencies- A, G, M
  • Lyme Disease (Ab)
  • Toxoplasmosis
  • Histoplasmosis
  • Coccidioidomycosis
  • Epstein-Barr
  • Cryptococcus
  • Brucella
  • Q Fever
  • B Henselae
  • Tuberculosis 
  • Blastomyces
  • Strep Throat
  • Cytomegalovirus
  • Syphilis
  • HIV
  • Pheochomacytoma
  • Carcinoid Syndrome
  • Systemic Mastocytosis

...I'm sure there is a slew of other stuff that I can't remember, but those are at the top of the highlight reel. We're still looking... the current focus- revisiting Lyme Disease, based on some genetic testing results that indicated a mutation caused only by Lyme.

Back to the point of this long winded ramble... I'm not sharing this to to gain pity or seek attention, I don't wan't to be a martyr, I'm not asking for forgiveness or acceptance. I'm doing the best I can and for the first time in my life, I'm okay with that. Those 4 words are been the hardest of this entire article. I'm okay with ME. 

I'm thankful for well meaning comments, I appreciate the offers to help; but to be honest; if I don't even know what's wrong... I really don't know how you can help. It's difficult for me to ask for help; but I'm finally in a place where I know that if I truly need it, I will ask. I promise. I know that I need to do better about sharing what's really happening with me. In preparation for that, if you are going to ask me how I am; be prepared for the honest answer. Some days it might be good, some days it might be truly awful. I'm not going to hold back or sugar coat it. If you're not all in; for both the beautiful and the ugly, please don't ask. I feel like I've been distracted by what I've been going though and I know I've slacked off in the relationship maintenance department. Since we are being real with each other here; I'm just going to say it. It's hard for me to concentrate on everyone else when I'm worried that I am literally dying. I'm not trying to be dramatic, when your doctors are testing you for obscure diseases and cancer every other week and you feel the way I do... it's not irrational. Because I am a "giver" down to my core, I feel like I've been being selfish and that has finally stopped. For the first time taking care of me is my number one focus. I've got to be okay with that. The best way for you to show your support? I need you to be okay with it too. 

Do I want to feel better? You bet.
Do I want answers? Every. Single Day. 
I want to be healthy (period). I don't want to have to decide on whether I shower or spend time with my partner. I want to go to happy hour on the fly. I want to run, hell; I'd be happy with walking, a race- at my pace, on my terms. I want to stop being thankful that I didn't have a heart attack on my walk through the parking lot before and after work. 
The thing I want most of all? For people to understand that appearances are not everything! Before you pass judgement, pass some empathy first. You never know what's happening in someone's life; you don't know the battles they face, large or small. 

Be kind. Share some love.

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