Oh no you didn’t! Things I can’t believe people say to sick people…

I have a big mouth. Like a really big mouth. I’m notorious for saying things without realizing that there are some things you should not say — for putting my foot in my mouth. In fact, it’s something that my friends tease me about constantly… Want a dose of irony? I’ve been listening for people say the most absurd, inconsiderate nonsense you’ve ever heard. The worst part? When it comes to those who were once the closest to you…

Total strangers, acquaintances, & “medical professionals”:
Have said that I’m faking my illness. They have said that I’m just looking for attention. They have acted as if they’ve had a flipping clue as to what I’m going through. They’ve pretended to have “cures” to my illness that they don’t have a clue about. They’ve assumed I’m pregnant. They’ve used my vulnerable moments where I’ve opened myself up in hopes of helping others, to attack me personally. In fact, one woman went so far to say “I hope you never get better.” The ironic thing is that I just end up feeling bad for them. This kind of total lack of compassion indicates, to me at least, that they’re pretty unhappy & that they’re self absorbed jerks. Look, I just want people to be happy, & there’s nothing wrong with being self absorbed… HOWEVER, if you’re so miserable that you have time to bash total strangers, something is wrong. I feel bad for you. I do my best to educate & be patient with these people. When they start to annoy me, I stop myself & say “I wish them peace, love, & happiness.” It’s corny, but it makes me feel better — it’s something I highly recommend. But again, they’re total strangers, who gives a flying f@ck what they think?

My family:
This one hurts a lot & involves very few words, in fact, not a single word. It doesn’t really surprise me, my extended family, who has only been involved in my life as it’s been convenient, hasn’t said a flipping word to me. Not one card, not one call, not one visit. They know I’m sick, they just don’t care. Total strangers care more about me than they do. Yet, when I die, I’m sure they’ll all be “wahhhhhhhh she died so young” I’m hopeful that my husband & friends will tell them exactly where to go. It would be nice if things were different, but we’re talking about some serious family drama & issues that go way beyond my illness or even me. I just have this naive idea that “family” means that people put their crap aside when this kind of thing happens… I wish them all well & pray things were different, but I’m not exactly optimistic anymore.

My once closest friends:
I’ve heard it all… From “all you talk about is Lyme” to “have you tried” to “I had that once” to “you just need to…” to “feel better soon.” I’ve developed a pretty thick skin about this stuff & usually just smile & nod, educating them as I have it in me. Their comments are based in ignorance & sting, but what hurts the most is them just flipping dropping off the planet. It’s like I’m dead. I have a few friends who still check on me from time to time, but most of them are too busy with their own lives to worry about me. The “old me” was the person who always made the plans, the friend who did the driving, the person who called, etc. “New me” just sort of sits here, alone, behind her computer, waiting for the moment when I can serve some small purpose in their world. I want them to be happy & enjoying life — I’m happy for them. I just wish things were different.

My dad:
A newly born again Christian, screamed at me for 2 hours that I was “still sick because you haven’t found Jesus.” I could be wrong, but that doesn’t sound terribly Christian, not to mention that it’s inaccurate. I pray he’ll see the error of his ways, but it’s unlikely… I suppose a tirade about the lack of support I’ve received from my Dad will eventually make it’s way to the internet, perhaps on Father’s Day — keep your eyes peeled. In any case, he is who he is — I love him despite this nonsense, & I keep holding onto hope that things will change, that I’ll get the love & support I deserve, even at 40 years old.

My kids:
I love them unconditionally but have broken my heart a thousand times, they don’t visit, don’t ask how I feel. It seems like my illness has no impact on them. One of my girls has more than once said to me with a smile “at least it’s not Cancer.” I wonder if I did have Cancer, would she care about me then? I’m hoping that as they grow up & can see things clearly for themselves that they’ll come back to me, & express some level of compassion so that we can move forward. I was not a perfect parent, but I did my best, & I did it alone & I was sick the entire time. I raised you better than this… Regardless, I love them & just want them to be happy, if that means they don’t talk to me, so be it.

And on the flip side…

My dear friends who have stood by my side, my youngest daughter, & my husband:
You have been my biggest cheerleaders & my constant support. I could not do this without you. I am grateful for you at every minute of every day. You do not always say the right things, but your unwavering support speaks far louder than your words. I am so sorry that I’m not there for you the way I used to be. I am so sorry for the burden I have become in your lives. I am bound & determined to get better — when I do, I’ll make it my life’s mission to repay your kindness & love.

And to the people reading this…

To the caregivers, family, & friends of the sick:
Thank you for taking the time to read this. It’s a small thing you’re doing for those you love. It shows that you’re compassionate & caring. The world needs more people like you. You are all angels.

The person who has a chronic illness:
You’re no doubt nodding your head & thinking of a thousand similar experiences. I’m so sorry you’re going through this. You don’t deserve to suffer. You deserve compassion & love. You deserve to be healthy. You deserve so much more than you’re getting. If you’re anything like me, the feelings of loneliness & being a burden have led you down a pretty dark path, more than once. Please hold on. Reach out to a friend, a therapist, a suicide hotline… Reach out to me. If you cannot hold on for yourself or your family, please do it for the millions who are suffering like you, who look to your example for strength. We are in this together.

I have good days & bad. I have days where I come inches from throwing things at people who say idiotic things to me & days where I just laugh it all off. I have days where I can’t take it anymore & I’m googling different ways to kill myself. I am fighting for my life & I’m not giving up. I am fighting for those who suffer along with me, we’re in this together.

I have disease that really sucks — or at least that’s how I got it…

landscape

I’m typically so busy with my “little world” that I get distracted & forget about myself.  I can’t help but wonder how long I’ve been doing it for.  On July 18th I suddenly felt numbness in my left arm which led me to MGH — they said I had a pinched nerve & that I should go for massages.  A doctors prescription for massages?  Short of prescription for “more cowbell” I can’t think of anything cooler — sign me up!

I was a good patient & forced myself into following “doctors orders” & had weekly massages.  Yet the numbness got worse & worse.  I saw a chiropractor, did yoga, drank green smoothies, & finally saw my neurologist.  The person I typically see in the office is a physicians assistant because I really think the best appointments I’ve had have been with physicians assistants & nurse practitioners. She recently left the practice, so I saw “The Head DIC” —  who proved to be just that.  He told me that I didn’t have a pinched nerve, that he’d run tests but that there wasn’t anything wrong with me & that this was not a neurological problem.  He ordered tests on just about everything — essentially to placate me.  To add insult to injury, the claim for the screening for multiple sclerosis he sent me for was denied by my insurance company…

Most people would tell you that I’d run circles around the Energizer bunny, yet I was operating at 25% capacity for several months.  I couldn’t decide what annoyed me more: being in constant pain or “The Head DIC” insisting that it was all in my head. I told my chiropractor “Dr Nick” what had happened & asked him for a referral — he sent me to “Dr Chris.”  Short story long, long story short: I have lyme disease.

Let me tell you a little about lyme: most of us think of lyme as a disease you get if you’re outside frequently or spend time with animals.  But the truth is, that the people who are frequently outside or work with animals are the lucky ones.  They’re all too aware of the disease: they know they’re at risk, they know what the tics look like, & they know that they need to begin treatment immediately.  Your average joe asks questions like “Did you have a tick?”  “Were you outside?”  “Did you have the rash in the shape of a bullseye?” — which is what I would have asked before now.  The reality is: the ticks are teeny tiny & often go unseen, you can get a bite on the beach, & you don’t always get a bullseye rash.  I talked to “Dr. Chris” who told me within moments that “there’s definitely something wrong with you” (something you, my 3 loyal blog readers are bound to find out first hand…) & talked to me about possible causes.  He immediately suspected lyme — we live in New England where it’s rampant & he had seen more mis-diagnosed cases than he could count.  He even told me that he had a patient that had a Hodgkins diagnosis, but it was actually Lyme.  I told him “I was already tested” but he told me that the typical panel is terribly ineffective (something like 30-40%) & that I needed the full panel.  Well, they ran the full panel & it came back positive & I was thrilled!  Lyme disease: antibiotics & you’re fine.  SOOOOO NOT TRUE!

For the last 3 weeks I’ve been taking 1000mg of Clarithromycin & 400mg of Hydroxychoroquine.  Sounds sexy huh?  Well, I’m getting worse.  My doctor warned me that this could happen.  He told me that we still don’t know enough about the disease & that the medical community is in constant debate on the subject.  He told me that some people NEVER recover & that we will likely try several combinations of antibiotics, that some people found relief through daily IV antibiotics, but that it was expensive & NOT covered by insurance.  In typical Stacy fashion I just had to focus on the positive, suck it up & take the pills.

It’s been 3 weeks, I have an appointment today at 11.  I’m hoping to get in with the “lyme guy” at MGH if “Dr. Chris” will support it, pending my blood work.

In the meantime, I found a really cool website/app through a TED Talk that I LOVE: SuperBetter, it makes getting healthy a game.   Even if you aren’t the “gaming type” (we’ll scold you for that another day) you should watch Jane McGonigal: The game that can give you 10 extra years of life — it will change the way you look at things, 20 minutes well spent.

Rambling about my problems for no reason isn’t my style — I’m hoping that this post will help someone else.  Maybe I’ve dispelled some lyme myths.  What I really want want is for us all to take control of our healthcare.  Don’t be a “good girl” & do whatever your doctor says — be informed & fight for your every minute of your life, time is finite 🙂