Saturday, August 31, 2013

PSA: It's Not Just Handicapped Parking That Makes "Normies" Ignorant

I've complained a time or two about the way people look at me when they see me get out of a handicapped parking spot. In case you haven't noticed any of those, I thorough enjoyed this article speaking to the ignorance of some people out there.

However, today I want to discuss I different a different form of the ignorance I experience in my daily life. Well, this one is a we-issue, meaning it affects not just me, but also Kevin. 

Friday night we were at the Nationals' game. As he does everywhere we go Kev was carrying my purse. In case it's not obvious to you, he does that because of two main reasons: 1-my primary diagnosis is a nerve disorder that affects the entire upper quadrant on the left side of my body, from my neck through my shoulder down to my fingers; and 2-because that combined with everything else makes me incredibly weak and I tire easily, as well as faint frequently. He sees it as an unnecessary burden for me that adds extra pain, and why shouldn't we avoid exacerbating things....

Walking from our car to the stadium, we were both aware of a group of 5 or 6 people walking by us chuckling. Not so quietly one of them kept making comments. "You know what, I should wait to say it..." And then upon seeing both of us turning our head, "Oops, I said that out loud." They were all roaring with laughter. Perhaps adding to their glee was the fact that instead of my usual black purse, that night I had chosen to bring a pastel pink purse. 

Throughout the night many people turned to stare at him/us. For some odd reason we didn't discuss this until Saturday at home, but upon sharing info we found that we both noticed all of it. We noted the days I wear my sling this obviously never happens. What was odd to us was that even though privately it was eating us both up, we said nothing to each other or to the idiots blatantly making comments. 

I recently got fired up about the looks I got from parking in handicapped spaces. A friend of mine who can actually relate, and therefore is qualified to share opinions on such matters, told me that it's not worth getting so heated about the ignorant dirty looks. Now, this is true. I let it affect me too much. She also pointed out to me that there are ways to politely and appropriately attempt to educate the people who find it necessary to make comments. Kevin and I both wished we had said something to that first crowd of goons. And at least now we know that we are in agreement about how we ought to handle it next time. 

But that still doesn't feel like enough for us to simply have a plan. It's wrong that we can count on there being a next time. I know my blog doesn't reach many people, but for those it does I am challenging you to consider this on a personal level. 

If your mother, wife, or best friend had an injury or illness that made them tired, weak and in pain, would you help them carry their purse or bags? Would you help them with absolutely anything you could? Would you do these things only in the privacy of your home or would you do it in public? Would you care what it made you look like to strangers who only see a purse on a man's arm with no visible injury to the woman? Or are you the type of person who just sees a man carrying his date's purse and laughs? Would it matter even if a man was carrying a purse for himself? Do you judge people who use the elevator instead of stairs for one flight, or do you remember that you don't know their situation? Do you judge the "healthy looking" people in handicapped parking spaces? Do you assume anyone young and not blatantly crippled is in good health? Do you think everyone elderly is in bad shape and weak or ill? Or, God willing, has someone in your life instilled upon you that you ought not judge a person's outsides when you know nothing of their circumstance?

Think it over. In many of my posts I use the phrase invisible illness. It's hard not to know exactly what that means -- it's self-explanatory. I didn't come up with that wording, but I love it. It's a blanket over a whole community of people like me who struggle against disease that cannot be seen by the naked eye. As my friend reading this blog, I'm sure you're sympathetic to me. But can you take that into real life and stop yourself from judging strangers? If you didn't know me, would you mistake me for someone healthy and whole? Or if you were in Kevin's shoes, would you have the love in your heart to not give a fuck what a bunch of wannabe tough guys think? He knows he's more of a man than them for it. 

I didn't even realize this when I started typing this blog, but I know now. What I'm talking about is adult bullies. As ridiculous as that sounds, these people who feel the need to make comments and laugh and stare are just plain old bullies. Kevin and I look different when we're out, and bullies of all ages like to laugh at the people who are different in some way. It happens in high school and apparently it never stops. It's pathetic. When I coached at Parkville, they had campaigns and pledges to stop bullying (mostly because of the prominence of cyber bullying at the high school level). This doesn't exist in the real world, because it should be a code of life. It should be common sense, but as Voltaire said, "Common sense is not so common."

It's my own anger and insecurity with my health that makes me feel the need to defend myself. That's obvious. But I also shouldn't be in a position to feel the need to defend myself. Other adults shouldn't behave in such a immature, thoughtless ways. 

My friends always say they wish they could do something for me, to make my world better. It isn't often that anyone can directly offer me help, but I have thought of a way you can make the world better for everyone: Consider this post, sincerely ask yourself the questions I posed, live with mindfulness, behave with thought, and speak up against bullies (at any age). 

As always, thank you for reading and offering your endless love and support. 

Thursday, August 22, 2013

The Fabulous Miz Bobbi Becker

I always love sharing what my awesome friends do to show how much they love me during these trying times. As I've said many time before, YOU GUYS make my world less small, and it seems to keep getting smaller.

A friend of mine recently sent me a card. Her message is simple, sweet, and perfect. Her handwriting is also perfect, and in case you were wondering, it's her own made-up calligraphy-esque font. (I once was at her house while she was addressing envelopes for a friend of hers' wedding because this font is that awesome & I volunteered for the job of envelope-licker. Privilege!) Even better is the card she mailed me is her own, meaning she is an artist (self-taught) and she makes these beautiful paintings. Then she turns them into prints and cards and other lovely things. So now I have not only a thoughtful card from someone who loves me, but a piece of true artwork.

Below are images I took of the card, her handwriting, and her message to me. It brightened up my day so much. But first I want to tell you a little more about the woman behind these. She is one of my soulsisters out there in the great big universe. She has a big ol' bear of a dog named Finnegan, and I used to foster a big ass bunny, also named Finnegan. At the time I met her, she and I were both living alone. She is, as all women are, the Queen of her castle. However her castle is a gorgeous house/cabin in the middle of her own enchanted woods. She is also the Queen of those woods. It was there she took me out to pick fresh raspberries to add to our morning cereal. We bonded over our love of dogs, quotes, passionate love, bad taste in men, and great sex. She is one of the Queens ruling her very own, co-owned boutique. She may well be the Queen of dreaming big and boldly and also of loving fearlessly and ferociously. And finally, she is the Queen of the penis game, even though she didn't even know what it was until I came into her life!

Without further ado, the art and love of the Oh-So-Fab Bobbi Becker:



In case you have a gifted enough eye (meaning you aren't blind) to see how ridiculously talented my dear friend is, here are all the ways you can track down her to peruse her prints or buy a birth certificate.
This is the blog for Foxxy Moxxy (a boutique that Bobbi co-owns)

Wednesday, August 14, 2013

30 Day Chronic Illness Challenge (Days 5 - 10)

Day 5: Umm, awful. Most days, most ways, I hate my life.
Day 6: Savor every last little thing because you don't know it now, but it's ALL slipping away. 
Day 7: Most people are unreliable, and in the end you are the only person you can truly count on. Some will be fleetingly there, some will be great while they're there but be infrequent. But at the end of the day it's just you with your symptoms and your feelings. No one understands. 
Day 8: I can't. I don't have an image of that. I was to believe I will get better and resume a life that involves coaching and working and exercising, but no doctor has really sold me on that dream. And I can't imagine living another 5 years like this. So to reference Twilight, I can't see her future anymore. 
Day 9: Acupuncture and chiropractic work. No and no. Though I haven't tried either for the latest issues. Doesn't seem worth the out of pocket money with all I have to dole out for copays...and the track record of ineffectiveness.
Day 10: There aren't many... But my Dad gives me unwavering love and support. Kevin does every day-to-day little thing there is (i.e. carrying my laundry downstairs, making most of our meals, driving me damn near everywhere, helping me move around...) Oh, and Peapod grocery delivery from Giant.

Sunday, August 11, 2013

30 Day Chronic Illness Challenge (Days 1-4)

This is not going to take 30 days, because some questions will either have already been answered or I just won't feel like answering... It may be less than 30 days because I'll answer multiple in one day & skip some. Or it may take more than 30 days because I'm easily distracted and disabled. So there you have it. But we shall start now.

Day 1: You already know my name is Shanley. You also know the illnesses I have from my post "What's Wrong With Me".
Day 2: The aforementioned post lists all my diagnoses and gives details of life with half the list. There will be a part 2--I promise.
Day 3: Redundant
Day 4: Some are awesome. Some suck. Most guys used to break up with me over it. Then this one guy decided to marry me because of it, so.... lol ;)  I've said this before, there are mainly 3 types of people: 1-those who don't know what to say & pretty much never talk to you because of it, 2-those who try really hard to empathize but end up saying the most insensitive things (coming from a place of good intentions), and finally 3-those mythical, majestic people who say the right things!

Saturday, August 10, 2013

What's Wrong With Me (Part 2)

^Sometimes it's easier to explain if you do some research on your own, because this is a wide, all-encompassing disease that is impossible to explain concisely AND accurately.

CFIDS has been the most significant diagnosis, both ruling&ruining my life for more than a decade. Most people know this one by my weak immune system -- aka if you sneeze around me, I'll be sick for a month. When looking to diagnose ME/CFIDS (aka CFIDS aka CFS), these are the symptoms to go with...

Symptoms of CFS are similar to those of the flu and other common viral infections, and include muscle aches, headache, and extreme fatigue. However, symptoms of CFS last for 6 months or more.

The main symptom of CFS is extreme tiredness (fatigue), which is new, lasts a minimum of 6 months, is not relieved by bed rest, and finally is severe enough to take you out of your normal activities. (Mine has been over a decade, so...)

That's simply how to get diagnosed. But as time goes on, and you pay closer attention, you find some other symptoms, including:
  • Feeling extremely tired for more than 24 hours after exercise that would normally be considered easy
  • Feeling unrefreshed after sleeping for a proper amount of time
  • Forgetfulness
  • Concentration problems (brain fog)
  • Confusion
  • Joint pain but no swelling or redness
  • Headaches that differ from those you have had in the past
  • Irritability
  • Mild fever (101 degrees F or less)
  • Muscle aches (myalgias)
  • Muscle weakness, all over or multiple locations, not explained by any known disorder
  • Sore throat
  • Sore throat
  • Upset stomach
  • Night sweats 

I have been so lucky enough, to have gone through aaaaaaaall these additional symptoms. I often have them, then forget they are a part of ME/CFIDS, then panic and look up what new thing I have only to be relieved(?) to know it's just good old CFIDS.

I'm lumping my mental health diagnoses together because though they are very different, they were all diagnosed around the same time, are my more minor conditions, and are more commonly known.

I've been ADHD my whole life. Just no one put a name to it until college. Not that I'm treated for it. But that doesn't matter much to me, in comparison with everything else. It has never been a hindrance to my schooling so they never noticed it. Same thing goes for me being dyslexic. If you get almost all A's, no one thinks you have dyslexia or ADHD. Sorry to break the mold!

My OCD is technically a pretty mild form, but severe enough that if I told you the more extreme ways it manifests, you'd think I was a total nutter butter. It's highly amusing to me that some of it's symptoms are "okay" or "normal" and some seem truly crazy to most. So I'm not going to tell you. Suffice to say, the diagnosis is definitely real. It's just not so bad that I'm worried if "xyz" isn't just so someone will die or anything. It just irks me to the point I cannot sleep or think of anything else or have mini-panic attacks.

PTSD is far and away the worst of the three, and fluctuates in severity. In my previous post I hinted at some reasons I have PTSD and also said that will not become the focus of my blog. Still true. But it's real, and it used to be A LOT worse. Like constant nightmares and tears from sex kind of bad. I'm a lot better now, but so far my experience suggests you don't ever fully shake it.

TOS (Thoracic Outlet Syndrome)
Below I put some links, again for you to do your own research. The quotes following the links are from the sources.

Let me give you my version of it: Imagine on one side of your body a curved line running from the middle of your neck, down through the middle of your chest, and hitting somewhere at the top of your ribs. So everything from that line outward down through you arm to your fingers hurts, tingles, goes numb, swells, and suffers massive muscle weakness.

Since September 2012 I have felt that pain every single day. This has continued and endured even through COUNTLESS injections and a surgery removing a muscle that was supposed to fix it. That's what it's like to live with anyways. But the somewhat more technical definition here is that a bundle of nerves is compressed causing this hell.

"Most doctors agree that TOS is caused by compression of the brachial plexus or subclavian vessels as they pass through narrow passageways leading from the base of the neck to the armpit and arm, but there is considerable disagreement about its diagnosis and treatment."

"The disorder can sometimes be diagnosed in a physical exam by tenderness in the supraclavicular area, weakness and/or a "pins and needles" feeling when elevating the hands, weakness in the fifth ("little") finger, and paleness in the palm of one or both hands when the individual raises them above the shoulders, with the fingers pointing to the ceiling."

"Neurogenic TOS has a characteristic sign, called the Gilliatt-Sumner hand, in which there is severe wasting in the fleshy base of the thumb.  Other symptoms include paresthesias (pins and needles sensation or numbness) in the fingers and hand, change in hand color, hand coldness, or dull aching pain in the neck, shoulder, and armpit."

More Technical Info On TOS
Treatment for thoracic outlet syndrome - National Library of Medicine - PubMed Health


I can't explain this as well. It's new. It's excruciating. And it's random and cruel. Let's just put it that way, shall we?

Living with these painful conditions, you can imagine I'm on a lot of medication, right? I've talked about it, so that's not new or exciting. Except that I now have the tolerance of a rhinoceros. 

This happens. The docs don't like dealing with something they can't fix or change. So they tinker. They want to try new things. Like when they switched me from Valium to Ativan. And it made everything worse. I didn't need they change. It was utterly stupid. 

My Spine Stimulation was perhaps the cruelest and most asinine of their tinkering. I was in extreme pain, from the "treatment".

They put a needle in my spine, for the 4the time, only this one didn't have medicine. It had wires, electrodes. The electro-shocked my spinal cord. Apparently in this therapy, you aren't supposed to feel pain because you feel the tingling much stronger. It's ridiculous and awful. 

I'm still in therapy. I'm still on my medicines. I will continue trying whatever alternative therapies they toss my way. But you really can't go 27 years living like this and not feel like this PostSecret card sometimes, because the secret is, death isn't scary--living like this forever is...

What's Wrong With Me (Part 1)

Do you know how long this post has been a work in progress? Since the beginning of this blog. For real. But it's time now. I've been wanting to tell you about my primary two conditions but now that has changed. It seems like it's time to tell about not just the BIG 2, but also the other stuff going on. Because there's more than my fair share.

^I really and truly can't even begin to tell you how often I come up short somehow and don't remember something I have. There are just so many.
Unless you're new to my blog, you know I love the chronic illness cat meme. Laughter is the best medicine.
I have been diagnosed with the following chronic illnesses/disorders: (In Chronological Order From Youngest Age of Diagnosis to Most Recent): allergies&asthma, chronic sinusitis, NMH, ME/CFIDS, ADHD, OCD, PTSD, TOS, and now doc's are not so gently hinting at a lovely little gem called CRPS. Hearing that get tossed onto the pile of medical shit in my life prompted me to revisit this blog.
This meme, as so many others do, made me laugh at loud (because if you can't laugh you'll just cry). I remember when I was diagnosed with TOS thinking "Oh, cuz one incurable lifelong chronic illness isn't bad enough? Really, God?!" But then time goes on and I remember that my count is already plenty higher than one or two. That list is my chronic illnesses or disorders that I live with on a daily basis (at least that I can remember right this very moment). CHRONIC health problems, not just whatever illness I've picked up along the way, like having my tonsils removed or the random lump biopsied from my breast (at age 19) or any of that.

Oh, yeah, but it does feel worth mentioning that there was once a doctor who diagnosed me and my knee injury as, "A medical mystery... But you are too beautiful to play sports anyway; you should just accept that you'll never play again, get a therapist, and go into acting or modeling." That was at the ripe age or 12 or 13, and my parents didn't sue or punch him; they listened to him and sent me to a shrink. That was at the very beginning of my knee injury, that later turned out to be a torn ACL. ACL tears are much too normal in comparison to the rest of my list, so clearly I had to mix it up there and have a record 8 surgeries on the same knee by the age of 23.
[Sidebar: In my to-be-read stack of books is Warrior Girls. When I read the book jacket depicting a story of chronic injuries in young female athletes, with a focus on soccer and knee injuries I damn near peed myself with excitement. I had to have it. Kevin bought it for me, along with a long-sleeved FCB jersey as a pre-op present back in March. But my lust for this book waned when I learned the book's central focus is on an athlete whose playing career ended after 3 knee surgeries. Warrior Girls also gives attention to a shocking entire 18-womaned roster with a combined ACL surgery count of 9. These numbers pale in comparison to what I did (stupidly, one may argue, but did nonetheless). Why wasn't I interviewed?! Seriously.

So let's get to diagnosing me, shall we? I've been jacked up medically since I was a wee tiny thing. Three times in my life, that I recall, I've spent a year or so completely laid up/ill. I'm in my 4th. And then there was definitely a 5th if you count the 2 (count em, two...) bouts of scarlet fever both before age 4 (so I'm told). I don't fear death, the way many folks do. I fear what my future likely holds: being so sick that I'm laid up in bed, all the time, forever. Death is merciful when compared to a life that steals your body but leaves your mind.

Allergies, Asthma, & Chronic Sinusitis
I was diagnosed with allergies, asthma, and chronic sinusitis all by the age of 10. I had been sick all of my life up until then. Mostly the doctors had said it was recurring ear infections. However, in children, sinus infections are frequently misdiagnosed as ear infections. Same goes for allergies and hand-in-hand with that is asthma. None of that was or is too exciting. I still suffer from these. I am allergic to most everything there is to be allergic to: grasses, weeds, trees, flowers, and all the lovely outdoorsy things. Inside, dust mites, dust, smoke, and cats do me a great deal of damage. I carry an EpiPen (an epinephrine autoinjector if you are unfamiliar) all the time. I did as a child then stopped for many years, as my allergies seemed to be managed well enough by allegra and zyrtec and benadryl. In November of 2011 I was rushed to the ER when I stopped breathing due to an allergic attack prompted by some unknown substance (comforting, isn't that?) in the Outback Steakhouse meal I was eating. I now carry an inhaler again. I usually have sinus infections all winter, resulting in antibiotics all winter. 2011-2012 resulted in 9 months of antibiotics straight. Pretty much the worst thing ever. Except for the shit that's been going on now.

Neurally mediated hypotension. This is a stupid disorder. Basically the heart and the brain just up and suddenly don't communicate properly. When that happens the blood pressure drops out of nowhere and the heart gets confused. The heart gets the signal that the blood pressure is too high and drops really low to compensate to fix it. This fun combo results in fainting.

Only I have it one better. I have the atypical version of this lovely condition. Instead of my heart rate dropping, my heart-brain communication is doubly jacked up and my heart rate spikes through the roof. It's the body's way of trying to increase the blood pressure, by pumping it out harder, faster. Only the heart pumping that fast is counterproductive: the ventricles/valves open and shut WAY TOO FAST, subsequently not getting outflow of blood and lowering the blood pressure even more. Then it's lights out.

It can happen after standing for a long time or getting dehydrated or just whenever the heck it wants. It is amplified by CFIDS and it ramps up CFIDS. Fun tandem there.

I was diagnosed after I fainted while driving. Fortunately I was only going 40 mph and it was after the big blizzard of 2003 and there were high snow drifts on the side of the road for my car to ping pong in (rather than flipping in a ditch). Three sides of my car were banged up. Just not my side. I had just passed someone going in the opposite direction, and it's a miracle for both of us that I fainted seconds after instead of seconds before.

Being 16 my parents didn't exactly believe that I had crashed my car without knowing how it happened. I told them it felt like I blinked and suddenly was in a snow drift, facing the wrong direction. They grilled me about if I was texting, talking on the phone, fiddling for a dropped CD, anything. They didn't believe me at all--they probably would have if I'd told them about the previous times I had fainted, but for some stupid teenaged brain reason, I hide it from them. I only got taken to the doctor as a way of calling my bluff. When it turned out I had a real heart condition (and a fancy new University of Maryland Medical Center pediatric cardiologist) they felt so guilty that they paid to have my car fixed. Which was awesome, but almost worthless because the docs benched me and said I couldn't drive until I went without fainting for 6 months. I still haven't gone that long, but I have learned how to recognize the symptoms of an "episode" coming, so I get to a safe, lying down position first.

Sometimes an NMH episode (as I call it) just causes bad dizziness, no fainting, especially when I feel it coming on. Sometimes it causes vicious waves of nausea. Like I said, it's stupid.

So that's it for now. Like I said, it's so much, it seems to make more sense splitting it up. Part 2 will contain the rest of the list. Thanks for reading. Xo

Monday, August 5, 2013

I haven't been a good blogger...

But it's not because I'm better. I'm not. I'm just spending my time reading, resting, hanging with my husband (on summer break from teaching), and at PT. 

When I do get on blogger I am STILL writing about all my diagnoses which I think I may have to release as a multi-part blog. It's so long, and still not done, no one will read it as-is!

But here's the summary of what's going on now:
PT is going amazingly (semi-sarcasm) because I manage to not be getting better. In some ways I manage to be getting worse ??? I only say semi-sarcasm, because in SOME ways it is ACTUALLY amazing how my body refuses to get better and chooses to stump the guys *in charge* (docs & PTs). I am amazing... I amaze them. Ha!

So let me jump in there and say, again (because I've said this in other blog posts already), I currently have an amazing medical team behind me. My therapist is incredible; she totally get me and all my layers; she totally speaks my language. My PT happens to not just be well-versed in what I was sent to him for, but he also is familiar with all my diagnoses. He's probably the first medical personnel that I haven't had to explain my conditions to. He's never angry when I'm late and he always takes however long my body needs to work with me each day. And that's saying something, because PT for this stuff is nothing like PT for a knee surgery. With a knee surgery you eventually get to lift weights and stuff. With this, with me right now, I pretty much require hands on attention nearly the entire time I'm there. I've said it a thousand times, I love my pain doc. He makes me laugh and stay relaxed, which is so necessary since he is the guy jabbing me with needles in my spine, in my back, and (the best kind) in the front of my neck so I can SEE IT COMING. Finally is my Hopkins TOS specialist. This is the dude who officially oversees everything. He doesn't make me go to Hopkins for regular follow ups. He lets me e-mail updates and he PERSONALLY replies within an hour or two every single time.

So yeah, I'm in great hands. Which means something has got to give. But not for a little while. For now it's all on my PT. Because Hopkins doc has put a hold on all injections until after I have an "MR neurography" (and MRI mapping out my nerves). This'll determine if my rib is still being compressed. If it is then it's probably time to talk rib removal. If it isn't, then I'm green lit for the spinal stimulator 3-day trial. Yay (NO)!

I'm still working on that LONG post telling you all about everything I have. And a few other little posts. But in the meantime, here are some of my favorite blogs that you should check out. Let them entertain you when I have my dry spells...

This is the blog of a friend of mine. She is a beautiful soul and person, a yoga instructor and a deep spiritual being. She tells her personal stories, her yoga stories, her travel stories. And most of her blogs include beautiful photographs of her practicing her passion-turned-career. She inspires me.

Another friend. He's truly one of the smartest people I know. And he does amazingly cool things with cutting edge technology that frankly I don't even understand. Also, a common thread with my friends is that he too turned his passion into his profession and lives his dreams. It's a quality I genuinely love and respect in people.

Kathy was one of my high school English teachers back in the day (10 year reunion is in 2 weeks). She knows she was one of my favorite teachers. She taught my favorite subject. I always loved her class, her personality, and now being married to a teacher I have all the more respect for her. One of the awesome things about growing up is realizing that your childhood adults are people too, and getting to see them as such. But I still feel weird referring to her as Kathy!

I don't know this guy but he shares that trait I love in my friends. He just flipped his world upside down to live his dream. He is awesome and inspiring in the way he has chosen to live his life and guide his family.

Speaking of family living and marriage...

Another wife, family, faith based blog. She is well-known as a Christian writer/blogger. Her faith is different than mine, but she's still quite inspirational.

Uhhh, duh.

Double duh.

If you don't know PostSecret, I don't know where you've been. But it can trigger any number of emotions. Funny, sad, inspirational, relatable....