Thursday, May 30, 2013

As Promised, Medical Follow-Up

I managed to see 5 doctors all in one day -- today. This was with only 2 appointments originally scheduled. It's an impressive feat. 

Our adventure started at 8 am on the 8th floor of JHOC. That's Johns Hopkins Outpatient Center to you normal, healthy people. It's pronounced Jay-Hoc, if you want to sound in the know.

We allotted time for me being slow, traffic, and parking, but we were still a few minutes late. I literally mean a few as in 3 or 4. Then the computer system had a major meltdown checking me in (couldn't handle my history or medicine list...?). So I seemed more like 25+ minutes late by the time they sent me back.

And do you know the first thing the woman doing a very painful test on me says? "Did you know that your appointment was at 8 o'clock?" 

Hmm, let me think about that. I know I made a conscious decision to wear my Superwoman panties today and it seems like you, Ms. Thing, decided on your bitch panties.

No, but seriously. I try my best. And as Kevin insightfully pointed out, these are the people who regularly treat disabled people with debilitating conditions. Good job.

And I seriously was wearing Superwoman undies. My best friend gave them to me, because I'm her Superwoman, or Supermoo if you prefer. Some people might think a grown woman giving another grown woman superhero underwear is weird, but I think that is weird. Anyways, I had a feeling today would be the kind of day that called for some superhero inspiration. 

I've spent a long time getting to my point, so I'll try to be concise. The test was painful, as it was the last time I had it. The technician was a bitch, unlike the previous tech I had for the same test. The primary nurse for the Hopkins specialist I saw was kind, compassionate, and thorough. I can't tell you how nice it is seeing someone in the medical community who understands my disease and knows I'm not crazy or exaggerating or a wuss or whatever. The doctor was also nice and understanding. He is the protege of THE Hopkins specialist, and he was training a Brazilian doctor. Baby steps, but so awesome that awareness is spreading. 

I'll share with you my text to my bestie so you feel equally special. 

So yes, I still have TOS. I'm still not better. And just like EVERY NEW DOCTOR DOES (no matter the condition) he wants to start at square one. Does it matter that I had unsuccessful PT before? Absolutely not. Maybe it'll be better now that I'm in more pain post-op. I am really looking forward to that. Now I've said before what an ace Kevin is in terms of being a caregiver, but he is not used to shit like that from doctor's. He was frustrated at how useless this appointment was, knowing that means prolonged pain for me. It sucked telling him that sadly, this is something to get used to. But in a weird way it was a nice change of tune for me to be the comforting, reassuring one. 

Now the referral for my heinous rash was actually useful. Thoracic doc suggested I see a dermatologist very soon. I went to the derm department 2 floors below, showed the receptionist my neck, explained, and politely asked if they could find time for me today. She worked magic and managed to squeeze me in just two hours later. 

Kevin and I dined in the main hospital's Cobblestone Cafeteria. We also visited the chapel for some much needed prayer and meditation. I gave him the insider's guide to Hopkins. 

I was seen by not one, but two, dermatologists. And they concurred the rash, that has been growing for the last two weeks, was caused by an allergic reaction to the surgical glue used to close my incision. Thus, the rash clearly circles the incision. 

For those of you keeping score, this does NOT make sense, because surgery was 2-months ago. So, this allergic reaction waited 6 weeks to stir. I know, I know. It doesn't make any sense. But three Johns Hopkins doctors were pretty sure that despite logic, that's my problem. They prescribed me a steroidal cream to slather on and around the rash and (because of my immune deficiency) an antibiotic, just in case there are other issues going on. 



If you're keeping score on another count, this'll be my third antibiotic in the past month. It's this vicious Catch-22, having no immune system. Docs always prescribe antibiotics because my deficiency keeps me so at risk, but then my immune system never can learn to be strong on it's own. I take a probiotic daily, whether or not I'm on an antibiotic. (From late 2011 to early/mid 2012 I was on various antibiotics for 9 months straight. Nonstop. Never got healthy. Just a frame of reference.)

Four docs down, one to go. Fifth was not at Hopkins. Number 5 was my pain management appointment. That appointment was originally scheduled for next week but we thought it'd be a good idea to consolidate and save Kevin from having to take another day off. The reason we initially didn't do that is because my pain doc is on vacation until next week, so the appointment would be with the PRN. I love nurses. Usually more than doctors. This office is one of the exceptions. But I figured this appointment is just refilling a few prescriptions. No big deal, right? Wrong.

Due to a lot of pain and a very long day I was incredibly emotional and showing it. We waited for more than 30 minutes for the appointment. In the waiting room I was privy to hearing, separately, two of the nastiest, most entitled one office could hope to face, back-to-back. Both women we old enough to be my grandmother and through their loud rants I learned they both only take two medications a day. And they both suffer from temporary painful ailments. They ripped the receptionist a new asshole, for things she had nothing to do with. They both are still gainfully employed. One of them threw a fit that the docs were running late because she had to get home to her cats, because she breeds (don't get me started). The other spent several minutes complaining that she has too much natural gray and wah-wah-wah the time spent on the upkeep and the last dye job came out brassy. And they were both throwing gigantic poor-me-pity-parties about everything. When they both left I started crying, in the waiting room, our of exhaustion and out of anger. It's hard to express to fire in my gut, in my soul, when I hear stuff like that. I hope I live long enough to earn my grays. I hope at that age I'm only on 2 medications. I hope I'm physically able to work. It's common for us sick kids to feel frustration with people who seem to take for granted the basic things we dream of. I usually keep it together better, but after today I just couldn't. The combine of mental and physical exhaustion was too great (remember, I also typically spend my entire day in the couch). I shared my frustrations with Kevin, and fought to hold back the tears, but the spilled over when a nice older lady nearby got up and brought me a box of tissues. 

So by the time it's my turn to go back every bit of exhaustion from the day has set in. I shared all my updates from Hopkins and lack of surgical success with the nurse. I not only had to beg for attention and my refills, but I also got a lecture. This lovely lady decided to lecture me on making "mountains out of molehills" in regards to my pain and my life problems. But like the women in the waiting room, I think "if you can physically hold down this job, how can you even think you can comprehend my world?"

Today ended with too much nausea to eat much dinner at all and a feeling that I ought not get out of bed tomorrow. Sometimes you just need a day. Or several. 

Thanks all for messages, texts, thoughts and/or prayers today. You guy are, as always, so very wonderful. Keep it up, because this journey is most certainly continuing. Also, will someone remind me to get around to finishing the "what is wrong with me" post so everyone can be caught up?! Thanks again!!

Wednesday, May 29, 2013

Chronic Illness Meme & Johns Hopkins Preview

First I wanted to share a new meme discovery: chronic illness cat. You should count on seeing this guy a lot. He is wonderful.

Examples:


























Second, I wanted to tell you about my upcoming doctor appointment. I meant to post way earlier in the day but now it's silly because the appointment is in like 9 hours. 

I'm behind my self-set schedule because physically yesterday and today have been very bad days. Yesterday was great going to the game, not so great that the Nats lost, but just took a lot out of me physically. I couldn't even stay awake past I think 8 or 9... And then today, my stomach was just... Ugh. So I just didn't get around to it. That's how this stuff goes in the life of a sick kid. Frame of reference: I actually had a visitor coming over today -- I never have that -- and I had to cancel because I just wasn't up for it. Fortunately my friends are loving and sympathetic about my problems. So it was a bummer, but ok.

Anyway... tomorrow is my appointment at Hopkins. This is the doctor whose approach to TOS is removing the rib AND the muscle, not just the muscle (as I had done). My surgeon told me he didn't see a problem with my rib, but since I wasn't getting better and he had no help to offer me, it was worth seeing if they saw something he didn't. (This paragraph reminds me that I have a draft started about my actual illnesses, really detailing what they are, what my symptoms are. I use the acronyms a lot, and my closest friends know what they are, but since I've recently learned people who don't know me that well also read --and thank you, btw-- I need to spell some things out for ya. Remind me to do that soon if I forget!)

Back to tomorrow, I've *really* been trying not to get my hopes up. Frankly, I don't feel anyone in the medical community has given me a reason to expect much. I specify in the medical community because my adorable father likes to tell me that he knows I'll be getting better, without even attempting a logic-based argument. Just cuz. He's sweet. Irrational, but sweet. So we know odds are very strong that nothing will change tomorrow, short of being extra depressed for a few days. Because if another doctor says they can't help me, that's inevitable. Or I could be planning another surgery... Who knows?!

A few hours will let us know. And you'll probably be third to know, after calling Dad and Moo.... Or I'll be lazy and you'll have to wait super late again like you had to for tonight's post.


**I'm posting this blog after midnight, so technically it changes my days, but when I said "today" I was referring to Tuesday and when I said "yesterday" I meant Monday. Just to clarify.**

Saturday, May 25, 2013

Date Night, How To Get In A Car, Flowers and Hugging Bears, & I Love You

Last night was "date night" for Kevin and I. We've made a few promises/rules in our relationship. One is to have an hour free technology each day. Another is to have one date night a week (my health permitting). The list goes on... 

But we were getting in the car. This is a process. He carries my bag and escorts me from the house to the car with me holding onto his elbow. He opens the door and I grip his hand tight as I lower myself into the passenger seat, still facing him. Then with my good arm I grab the "oh shit" handle (as my family calls it) and grunt and swing my feet in and get my body facing the right way in the seat. When I'm settled Kevin gives me my bag and shuts the door. Then he obviously goes around and gets in to drive.

As we were plopping me into the car, an unfamiliar car pulled up in the neighbors spot. We didn't think anything of it. Right after Kevin got in the car we saw a man walking up to our house with flowers. Kev jumped out and said that's our house and the delivery man said these are for Shanley, and Kevin pointed at me. 



Kevin brought the flowers and card to me in the car so I could see them and read the message before taking them inside. 

Not from Kevin. Not from my parents. A lovely surprise from a friend who is just so beautiful inside and out. She gave me a great smile. She is one of the most thoughtful and giving people I know. Frankly she inspires me to give more of myself, and I'm so lucky to call her a friend. Texting with her after thanking her, she said she had hoped the florist had a shark instead of that teddy bear, but that's a long shot. 

Anyways, just like my last post, I'm filled with gratitude. Last night I received several more messages from people who have been reading, but felt unsure if they should reach out to me. I thank you all. I love it when you do reach out, whether you are a long lost friend or a vague acquaintance. 

Every message I get renews my strength and my fight. Every person that says they're here, lightens both mine and Kevin's burden. You people are amazing to me. I truly do invite you all to talk to me, about my struggles or yours. To visit me and lounge with me, spend a night or two. 

I love you guys. Thank you for reading and writing back to me and showing up for me. 

Friday, May 24, 2013

You Guys Make My World Less Small

You people in the real world have TGIF. I used to, but now I often forget what day of the week it is. I've also, occasionally, forgotten the month. But I digress. I thought my version of TGIF could be a really uplifting, positive post.
It isn't written by me though. It's written by you.
Sometimes when people reach out to me about this blog, they apologize, more or less, for getting in my business. But please, get in my business. My world is small and everytime someone reaches out, it gets a little bigger.
The messages here are by no means all-inclusive of every FB message, text, or email that I've gotten, and clearly I can't include phone calls (like the 20 minute call from Hawaii yesterday!). Oh, and for once, none of this is about Kevin's awesomeness (even though we can all agree he has been the rockstar of caregivers). It's really all yours. YOU ARE AWESOME TO ME AND FOR ME TOO!!!!
Friends, I want you to know that these messages are a huge part of the reason I have this blog. As I said, my world is very small and isolated lately. Thank god for technology, because I can reach out and connect, and through this my world has become slightly bigger. Every time you tell me I inspire you, I feel more strength to keep fighting. Every time you share a problem that feels similar to mine, I feel less alone. Every time you send me these kind, loving words, you lift me up and you keep me going. You cannot possibly imagine how much every one of these means to me.
And that's a bonus reason I'm doing this post. Because the next time I get really down, I have an easy place to go to find so many blessings and so much love all with a single mouse-click. Re-reading these I wonder, what did I do to deserve you guys?
**Disclaimer: I removed things that gave away identities from the messages, because what you've said to me is personal, and it's not my place to put it out there. I'm just trying to share the wonderful love and kindness you've all bestowed upon me. If I slipped and you feel people reading will guarantee know it's you, message me and I'll go in and edit the post if need be.
So once again, thank you all. Love-love-love, Me.

PS--those of you that say I'm inspiring you through whatever your tough times are, talk to me... I'm home alone all day, so I'm available for those in need of a chat. Seriously. People always think "oh I can't share my problems with a chronically ill person, because my stuff will seem so trivial" but that is NOT true. Being able to talk to someone about "normal" problems, like family issues or dating stuff, make me feel more normal and connected. I will never feel your problems are trivial, everyone's pain and struggle, no matter how big or small, is real and valid. And being there for others lets me feel productive, like I'm contributing to the world. So lean on me. I promise, it will HELP me.

Okay, and on to what you loves have sent me......


"Hey Shanley!
I just read through all of your blog posts (yes, like a creepy stalker) and there are a few things I want to tell you. First off, I want to say I am sorry the surgery did not help as expected. That really sucks, and you are absolutely inspiring for keeping your chin up through all of your struggles. In tandem with that, it's good to know that you're allowing room to be vulnerable- I am a firm believer that allowing yourself to feel vulnerable, sad, and scared really makes you better able to cope with what you are going through. It can be overwhelming at times- feeling like you are literally suffocating in emotions, but taking it one day, one minute, or one second at a time and breathing through it, accepting those feelings- That is testament to your incredible strength. 
I am also really happy that you found a blog as a "mental dump" outlet. I know that when life gets overwhelming it is unbelievably important to get it all out- it is therapeutic and relieves some of the stress. I would like to thank you for sharing your struggles, and triumphs with me (and the internet). It's important that people know and hear about invisible diseases, and I think it's wonderful that you are sharing your personal experiences.
I have struggled with _____, another invisible disease but it is much more well known. I've been thinking about starting a blog detailing some experiences I have had with the hopes of helping others. Reading your blog has been absolutely inspiring, and I'd hope to inspire others as well.
I'm not sure if all of this rambling is actually doing anything, but I was compelled to email you about my feelings on what you've written. So I guess what I want to say is that you are a strong, compassionate, woman who has been dealt a really tough hand, but you have the fire in your heart that gives you the determination to succeed and overcome these shitty obstacles. I can't even begin to tell you how inspiring, and encouraging that is- especially to people like me, who suffer from invisible diseases.
I see on Facebook that you moved - but I googled it and you're only an hour away from me. Please PLEASE know that if you ever need anything, a plush shark, a box of chocolates, some cheer-you-up flowers, a shoulder to cry on, a person to cry with, a helpful ear to air complaints, pains, thoughts to- I'm your girl. If you ever need anything, anything at all, I'm a text or call away.
Love you, keep your beautiful chin up!"

"I am so sorry to hear about all that you are going through... _____ showed me your scar on Instagram and my heart goes out to you, I can't even begin to know all that you are going through but I know that you have made a difference in my daughter's life, not knocking _____, but _____ is constantly saying well it's different because in soccer we were a family,  I hear her repeat that theme over and over again, I hear such admiration in her when she talks about you, not just as a coach but as a person. I am so lucky that she had you for a coach but even more lucky as someone that she looks up to not just for winning  but also a strong, confidant young woman/ I hope you can get the relief that you seek from this pain. Take Good Care of Yourself and Heal...."

"So I started following your blog recently after seeing one of your fb posts... and from what I can tell, life kind of sucks right now, huh? Although your gratitude made me smile. I'm sorry your surgery turned out the way it did, more so I'm kinda pissed. Do I have any right to be pissed for you? Idk, but I am - it just seems like shit. If you get the chance to reply to this, do let me know what actually happened? 
I'm also totally here if you just want to rant and bitch about anything and everything, cuz I think you have every right to at this moment. I also wanted to say that I think Kevin is amazing. I'm in awe of him and you too ๐Ÿ˜Š
I really hope to hear back from you, I've been missing our chats!"

"Hey Shan, I am so enjoying your blog...writing is so therapeutic...but of course my heart aches for you....i wish we lived closer...so sad that you are so ill & lonely...if you would feel comfortable would you please send me your address...would love to drop you a card ...or something homemade & sweet??? Do you have any food restrictions??
Thinking bout you lots...and sending hugs"

"I was thinking of coming over  around 12:30. Is that alright? Do you need anything? Would you like me to pick up something for lunch?"

"Shanley i knew u were sick but had no idea to what extent. I've been reading ur blog and the tears just started flowing. Besides being unnaturally beautiful on the outside lol, ur soul, ur heart shines. Ur an amazing woman and I have an ever deeper admiration of u. I felt a connection with u when I met u for some reason. Shockingly cause I don't like ppl a lot lol. I resonated with ur tough girl attitude. I understand that completely. I just met a guy and I actually like him so naturally I wanna take off running!  I'm trying to be cool about it on the outside and not show him complete crazy.  Idk how to do this dating thing. Ur words have given me some hope for myself, eventually lol. I just want to know what can I do for u?  I wish I drove and could just sit on the couch and nap, talk, whatever with u sometimes. I'm at a loss for words. I can't believe u can't get disability. I just want u to know that I will be here if u need someone to talk to or lean on. I know u have a lot of friends and family an ur husband is AMAZING. But one more won't hurt. Ur a hero in my eyes. I wish u nothing but happiness and less pain. More light and love.  Namaste"

"Keep blogging, it's very powerful and I know you didn't ask for my opinion, but I can't wait to see you to deeper with it.... I know it's been a long journey, but I really hope you start feeling better soon."

"Hi Shanley,
I just read some of your blog and wanted you to know that you are on my mind. I am thinking of you and praying for you. I can't imagine or fully understand what you are going through and I don't always know the best way to put feelings into words, but I am a big fan of quotes, proverbs, and poems. I am hoping that some of these quotes I found can offer you words of encouragement.....
"Let someone love you just the way you are - as flawed as you might be, as unattractive as you sometimes feel, and as unaccomplished as you think you are. To believe that you must hide all the parts of you that are broken, out of fear that someone else is incapable of loving what is less than perfect, is to believe that sunlight is incapable of entering a broken window and illuminating the dark room." ~thethingswesay.com
"An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it's going to launch you into something great. So just focus, and keep aiming." ~unknown
"I'd be unstoppable if not for law enforcement & physics." ~unknown
"Giving up on your goal because of one setback is like slashing your other three tires because you got a flat." ~christinekane.com
"10 years ago we had Steve Jobs, Bob Hope and Johnny Cash. Now we have no Jobs, no Hope, and no Cash." ~unknown (pinterest)
"Tears are prayers too. They travel to God when we can't speak." ~ Psalm 56:8
"The strongest people are not those who show strength in front of us but those who win battles we know nothing about." ~unknown (pinterest)
"I can't promise to fix all your problems but I can promise you won't have to face them all alone." ~unknown (pinterest)
"Never apologize for what you feel. It's like saying sorry for being REAL." ~ILIKETOQUOTE.COM
I hope you smiled at some point. Keep your chin a up and keep writing."

"I just read your blog post. It reminds me so much of my grandparents. They had the strongest love I've ever known and I feel honored to have even been able to be in its presence. I know we haven't kept in touch over the years, but that number right above this message sent December 2007, still works. And I'd encourage you to use it if you ever need an ear to listen or mouth to distract you and perhaps offer advice on something I can't begin to understand, but feel for nonetheless. Keep your chin up, Shanley. We're all rooting for you."

"Hey shan! I got to tell ya- I enjoy reading your blogs- I'm learning about your sickness and I continue to keep you in my prayers! Loved your beachy pics with your hubby- beach pictures are always my favorite! (No make up needed!) I wish you didn't live in _____ bc I sure would love to catch up! Hang in there girl, it doesn't sound easy but with love of your family and hubs I have total confidence your tomboy self will be back! Xxoo"

"And oh em gee shanley we all hope you get bettrr.  This terrible you dont deserve this your are the best person I have ever met ! I know you will have somyhing good coming around the corner soon you deserve It ! :( please get better !!!!!!!!!!!! ♥
......I dont know where I would be with out you . You have really been a big helping hand."

"I miss you so much. I love you.
I actually just started crying when I typed those texts. I'm sad for what you've lost, I'm sad I don't see you anymore, that you can't really talk to me, we still love each other the same but our friendship is different now and I miss you a whole lot. <3
I am glad you started the blog but it does make me incredibly sad when I read it, so I don't do it often. I feel like, I'm a nurse and I should be able to help you. I have all the education, but it is so useless in helping someone I love so much. I don't want to make your struggles about me, I hope I am not coming off that way..."

"Hey Shan I know you've been feeling down lately with all the medical stuff , I just wanted to tell you to stay strong. You are always there for me and everyone on the team, You are a gorgeous person Inside and out, and you can make it through anything. Get well soon Shan, love and miss you."

"Love your modeling pics on IG and super love your tri hair (of course). I'm back in the hospital. Sigh. Hope you're feeling a little better. Glad to see you blogging."

"That happened to my aunt when she had knew surgery. She was 23 at the time. In her 40s now. And has multiple surgeries which never helped. Sorry that's not encouraging news.. I really do wish the best.... That sounds terrible. I thought I had problems too young with a bad back."

"sorry to see the recent events with your body and health ๐Ÿ˜” praying things get better babe."

"I wish there was something I could do for you ๐Ÿ˜ฉYour such a good woman... I love you and I wish I could be there for you. I will be back In town June 12-16 - If you need someone to wash & dry your hair..๐Ÿ˜ช๐Ÿ˜"

"Heard everything got worse!:( I really hope everything gets better and im sure it will!! I love you lots and Im here if you need anything shan"

Thursday, May 23, 2013

30 Things About My Invisible Illness(es)

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is: CFIDS (chronic fatigue and immune deficiency syndrome) and TOS (thoracic outlet syndrome)

2. I was diagnosed with it in the year: 2002 and 2012

3. But I had symptoms since: forever for CFIDS and only recently for TOS

4. The biggest adjustment I’ve had to make is: just changing my entire life

5. Most people assume: that I'm healthy. People always tell me how tired I look, but that's it.

6. The hardest part about mornings are: from the CFIDS: how stuff and achey my joints are and from TOS: staying awake long enough after my various alarms to get through my pills schedule

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn’t live without is: my iPhone

9. The hardest part about nights are: waiting for the medications to knock me out as my brain races through horribly sad and scary and depressed thoughts about my future

10. Each day I take 25 pills, and a few spreads of my ketamine cream

11. Regarding alternative treatments I: desperately need to find out if my insurance covers them.... I've tried acupuncture for other things and had no success but I need some serious help and Western medicine has failed me thus far

12. If I had to choose between an invisible illness or visible I would choose: invisible. For one thing, it's the "familiar evil" so I know what it's all about. Also, I hate when people treat me differently the second they find out I'm sick. Like suddenly I'm fragile or no longer an equal adult.

13. Regarding working and career: I've lost mine and I desperately hope to get it back

14. People would be surprised to know: how bad it really is, because I put up too tough of an exterior and avoid being vulnerable. However this blog is helping to change that.

15. The hardest thing to accept about my new reality has been: 1-that my health is totally public to people I barely know (via Kevin sharing it very openly with all of his friends even before the wedding) and 2-the complete dependence on other people, usually Kevin (so I can't be mad that he shared it, because it's now his story too). I can't drive or bathe myself or dress myself. And I am a VERY independent person, or at least I was... Maybe the hardest thing to accept really is the loss of the self-identity I had. I'm not the person I was...I can't be, my health doesn't allow it, but my heart still hold onto that.

16. Something I never thought I could do with my illness that I did was: keep on fighting, after surgery failed me

17. The commercials about my illness: don't exist. My invisible illnesses aren't the "popular" or well-known ones. They are both rare.

18. Something I really miss doing since I was diagnosed is: playing soccer. All forms exercise really.

19. It was really hard to have to give up: coaching

20. A new hobby I have taken up since my diagnosis is: this very blog.

21. If I could have one day of feeling normal again I would: drive and run and play soccer all day

22. My illness has taught me: a lot about who I am, more about who other people are, and even more about the point of life and how to live it

23. Want to know a secret? One thing people say that gets under my skin is: "if it were me, I'd do ______" Biotch, it isn't you and you don't have one single effing clue how you'd survive in my shoes. Don't tell me how to live when your health is perfect or even normal!

24. But I love it when people: back up their offers to help. Everyone says, "oh I'm here if you need anything" but those are usually empty words. I can't garden, do yardwork, fix stuff around the house, drive myself places, grocery shop, walk a flight of stairs alone, carry my laundry basket, etc etc etc. And I'm lonely. My world is very small. So go ahead, help. Show up. Not many people do.

25. My favorite motto, scripture, quote that gets me through tough times is: "everyone who lives, dies, but not everyone who dies has truly lived"

26. When someone is diagnosed I’d like to tell them: practice embracing/accepting change. Everything in your life will change and you can't stop it. Much easier said than done.

27. Something that has surprised me about living with an illness is: that someone still loves me, instead of leaving me for being sick, like everyone else did in the past

28. The nicest thing someone did for me when I wasn’t feeling well was: Kevin. Marrying me. And taking care of me daily ever since.

29. I’m involved with Invisible Illness Awareness Week cuz I like who blogged for it and I really like a fill-in-the blank form to share some of my own issues **it's not IIAW right now

30. The fact that you read this list makes me feel: like you're actually listening and like you genuinely care, if you've made it this far. So thank you.

Wednesday, May 22, 2013

How'd Florida Go?

As you may have read in my last post, traveling isn't great for me. The pressurized cabin, the bumps, so many things mess with my pain level. Kevin made it as tolerable as possible, but it was still a very bad situation for me. To simplify how bad it was, Kevin suggested for our honeymoon we only consider places we can fly direct to, because he doesn't want to see me go through that again. (I said no, if my honeymoon isn't worth sucking it up for, whatever would be? And I'm not willing to concede defeat like that.)

After landing, things didn't get a whole lot better for me. The taxi ride was bump after bump the entire way out. By the time we checked in at the hotel, it was time to get ready for the wedding. No rest for me, and god knows I need my naps to survive. So I made do with some energy drinks (I usually stick to just coffee), and I managed to not just survive, but also actually enjoy the night. The wedding was on the beach, and the reception was in a ballroom overlooking the beach, so while at dinner we got to see the sunset of the Gulf. Perfection.

I faded early inthe night but managed to hang on until the end, and even get some dancing in despite my body. Kevin was an angel, offering to leave early with every sign of my pain or fatigue, but I felt I had to hold out for the whole event. I mean, the "Chadresa" wedding is why we were in Florida to begin with. How could I leave early? Of course, as soon as I got to our hotel-home I crashed very hard.

We slept in all day Sunday, which was needed for my recovery. This isn't just the TOS, but also the CFIDS coming in to play. After several cups of coffee, we hit the beach early in the afternoon and relaxed. We sunned both sides equally, with me slathered in SPF 50. (Sunburns mean more pain, more dehydration, and more health problems in general. I'll stay pale if need be.) Then we went to play in the water. Floating and flirting in the Gulf felt so freeing. I forgot that what I was doing could be considered exercise.***

When we left the beach we decided ordering carryout would suit my body much better than going out. We got delicious calzones from a local Italian pizza place. Kevin set the table while I sat slumped over in my chair, and he asked if I was just tired or if it was something else. I said it wasn't tired, it was beyond exhaustion...meaning CFIDS related. 

Five bites into my 3-cheese piece of heaven I had to give up. I asked if he minded if I excused myself and apologized for not finishing dinner with him. I went to go lay on the couch and asked him to come sit with me when he was finished eating. Apparently I passed out quickly, only stirring for him to settle in with me moving my head to his lap, then I stayed out for 2 hours. I awoke disoriented and still exhausted. I ate a little more, knowing my body needed more nourishment ("food is fuel!"), and we went to bed soon after.

Monday morning meant checking out and another long, bumpy trip to the airport. I had nothing to do but sleep through much of the ride -- when my body is in pain, that is one of the best things I can do for it. We arrived with plenty of time, and that means good things for me. It means less stress, less fuss, and time for coffee. Fortunately our return flight was a direct flight, so we had it quite a bit easier upon the return home.

Fast forward to Monday night, and it's like Sunday night on repeat. I was dead to the world. We were watching some TV and I felt my eyes getting heavy, thought I'd rest a little, but then 1.5 hours passed and I woke up so groggy and disoriented. Kevin explained to me how long I'd been in & out, and that I'd oddly requested "my food" and said some other things. I apologized for not making him the Sloppy Joe dinner I'd promised.

Tuesday was still much of recovery mode. I slept in extremely late and felt it in my muscles and bones and entire being all day. I explained to K, and I'll now explain to you, that's just the way CFIDS works. It's not tit-for-tat. One day of exhaustion does NOT mean one day of recovery. I wish it did, but that's just a dream world. It's not reality. So we will see how the next few days go. Kevin's birthday is tomorrow, so tonight we are celebrating with his family and tomorrow we are celebrating with just us. I'll spend my days resting while he is at work, so I have a good reserve for the evening activities. And I'll keep you posted.


***Happy story: While we were packing up our beach bag, I noticed Kevin playing with his wedding band, and realized he had a noticeable tan line. If you know me, you know I'm the girl who has a song lyric for every situation and immediately the beginning verse of Ed Sheeran's "Wake Me Up" started playing in my head.
I should ink my skin with your name/ And take my passport out again/ And just replace it/ See I could do without a tan/ On my left hand/ Where my fourth finger meets my knuckle
ENJOY!

Saturday, May 18, 2013

Real time... Traveling!!

Kevin's friends are getting married today. On a beach on the gulf coast of Florida. I'm pretty sure it's the sunset, barefoot ceremony I've always dreamt of... And I haven't yet met these friends, so I'm honored to be there.

Unfortunately getting there means flying, and flying means a lot of bad things for me. I've flown alone since I was 15. Several flights alone since then. Florida. NC. LA. Bahrain. I've had layovers and missed flights and craziness.

Today I realized in this present health state, flying alone is another "thing I can't do." But Kevin, as always, is making sure to help with every possible thing that could go wrong. Within his control. He can't help how the pressure affects my swelling and pain...but he soothes me. He holds me still during the bumps that cause so much extra pain. He handled check-in. He carries the bags. He remembers to walk at my pace. He helps with my sweater on and off, zippers, and all. He body blocks other people from bumping me. He asks my every pain and symptom and ache, so, as he says, he knows how to help me. In all the hustle and bustle of traveling, his still on top of pill-time for me.

Without a complaint. Without a cross word to me. He doesn't do these things begrudgingly. He does these things with a smile, with lots of "I love you's" and forehead kisses.

We are on a layover now. Before our first flight I was terrified. So many things could be bad flying in my condition. But now I feel relaxed, I feel much more at ease. I'm learning to trust that he's got it. I am so used to being in control all the time, but I can't be anymore. I can follow his lead and it'll be okay. He's got this... And me.

Wednesday, May 15, 2013

Posters, Making Every Moment Count, and Caged Lions

I stare at this word-photo everyday. It hangs on the wall next to the right arm of the couch. To anyone who might come in our home, it's in a very tucked away corner. For me it's direct line of vision, 12 o'clock.


"Life.
Find a passion and pursue it.
Fall in love. Dream big.
Drink wine, eat great food and spend quality time with good friends. Laugh everyday.
Believe in magic. Tell stories.
Reminisce about the good old days but look with optimism to the future. Travel often.
Learn more. Be creative.
Spend time with people you admire.
Seize opportunities when they reveal themselves.
Love with all your heart.
Never give up. Do what you love.
Be true to who you are.
Make time to enjoy the simple things in life.
Spend time with family. Forgive even when it's hard.
Smile often. Be grateful.
Be the change you wish to see in the world.
Follow your dreams.
Try new things. Work hard.
Don't count the minutes, count the laughs.
Embrace change. Trust in yourself.
Be thankful. Be nice to everyone.
Be happy. Live for today.
And above all...
Make every moment count."

When I bought it, I thought, Sure some of these aphorisms seem trite, but I love it. It really is the way to live. I only thought about taking a sharpie through "drink wine," but everything else was dead on.

As you can see in the picture, some of the font is bigger than others, or bolder. But still I know this sign so well, that's not necessarily where my mind goes. If I'm doing well I see so much beauty, positivity, and great advice. I think, Hey, I can do that. I can be nice to everyone and be thankful and be creative. I can smile, laugh, reminisce, love, dream, trust, etc...

But this morning.... This morning I was not doing well. All I could think was I spend EVERY SINGLE DAY on this couch staring at this effing poster that says "AND ABOVE ALL MAKE EVERY MOMENT COUNT." Are you SERIOUS? Why in the Hell did I hang that poster there?

And then there were tears. And there was internal beating myself up. You're pathetic, I told myself verbally and internally. You don't make moments count. You're trapped in a body that can't do the things that define you and you're cursed with knowing exactly that; you're cursed with a disease that steals your body, but not your brain.

I AM NOT PATHETIC. I know that will be today's positive affirmation. But I also know it's true that I am stuck in a body that betrays me, while my mind stays sharp. Living with CFIDS for so long, that has always been my greatest fear. That one day I would be crippled by it, in such a way I spent all my days in bed, watching life and the world go by me. Oddly enough, it's more the TOS that has caused this. I never saw that coming.

CFIDS, in total, has caused me to spend nearly 3 years combined total disabled, stuck in bed. So I am familiar with this type of torture. And I've always told people, whether they believe it or not, that's a fate worse than death.

A few hours ago I was a leaky sobby mess, but I already have my fight back. I don't know how, but I'm going to find a way to get out of this trap. It's like wild animals that are captured and caged. In the movie XXX, staring Vin Disel and Samuel Jackson, Jackson's character says,
"You ever watch lions at the zoo? You can always tell which ones were captured in the wild by the look in their eyes. The wild cat. She remembers running across the plain, the thrill of the hunt. Four hundred pounds of killing fury, locked in a box. But after a while, their eyes start to glaze over, and you can tell their soul has died. The same thing happens to a man."
Jackson's character is referring to prison, but it's the SAME for people like me.

It's Me and You

Everyone comes up with their little tricks to cope through the really hard times. It's a fact of life for people like me that there will be horribly challenging moments and we need help getting through them without have a complete mental breakdown.

For me, lately at least, my truly horrible moments seem to be when the pain, for whatever reason, escalates suddenly, out of nowhere. I live in constant pain and I'm on a bazillion medications. So I can deal with the pain. Except for the sudden onset escalations. Those send me into mini-panic attacks (because the pain alone isn't bad enough, stupid body of mine).

The triggers for sudden onset pain are typically sudden cold air/wind, when someone accidentally touches my tender spots too hard (pat on the back, squeezing hug on that side), when I fall, when I almost fall but catch myself with my left hand (stupid body reacting stupidly!), and finally the "just because it happens" trigger. I also have the mini-attacks from bad news/emotional pain.

I can't prevent any of these. But when they happen my slight familial tremor I inherited from my mom goes crazy and one body part shakes as if I'm seizing. Literally, if I'm in bed with the tremor, you'd think you were in one of those tacky old motel rooms with the vibrating bed.

In addition to the tremors, my reaction to the pain is tears. Duh, right? Kevin and my dad have gotten really good at identifying the onset by the look on my face (if they aren't by my side for me to just tell them). I clench my face, my entire body as well, but really squeeze my face, refusing to cry until I'm somewhere safe. A private room. The car. Just not in public, not in the middle of my grandma's 90th birthday party, or Opening Day for the Nats, or Easter at my cousins.

I know I need to be hugged. Held. Loved. Reassured. I used to be a "tough girl" who didn't want people to see me cry, ever. If I had to cry I would run away alone, lock myself somewhere totally private. Now when this happens, Kevin or my dad or whoever is emotionally closest to me at the event damn well better take me away. I can't be alone with these tears. I have to be held, so I can start feeling safe.

It is a slow process. It gets worse before it gets better. Once I'm in the private safe place to cry I let go of the tension and my tears come cascading out. My body shakes with sobs, even if the tremor doesn't kick in. My hair gets soaked by my own tears. Kevin's shirt gets drenched. I feel as if I can't breathe, I feel as if I can't possibly survive the next few minutes or hour. I feel like I'm going to die.

I am in that moment trying to rescue myself from drowning in my own pain. I can't possibly do it. When this happens and I'm alone, I inevitably cry and sob until my body is exhausted and I fall asleep. But the best way I survive this, is with Kevin in charge.

We learned the best technique on Opening Day. We were having a great time and it was my first game at Nationals Park. It was actually really warm, even hot, most of the day. I was loving every minute of the experience, sharing one of K's favorite things with him. Watching Bryce Harper hit TWO home runs on Opening Day. What a day!

The Nat's won and we were in celebration mode. Everyone was. We had to wait to meet some friends so Kevin could give them the shirts he made (very clever, about Pitcher Ross Detwiler, "Like a Ross"). Anyways, we were waiting, waiting, and it started getting really cold. And then windy. Double trouble for me. Kevin saw what was happening, and rushed through the exchange with his friends. I tried to smile and greet them nicely; he has wonderful friends.

We rushed to the car, which was parked reasonably close, but at that point it felt hours away for me. I failed my usual steely face and tears were streaming down my face as we navigated the crowd. I just kept my head down and trust Kev to guide me.

Once we made it back to the car, I was immediately relieved to be out of the wind. We laid my seat back and I let the waterworks start. Kevin held me, petted me, reassured me. He looked into my eyes and showed no fear of his own. He told me it was going to be okay, over and over. He said, "It's me and you baby, it's just me and you. It's going to be okay, because it's me and you. I'm not going anywhere. It's me and you."

Time passed. I calmed some. His parents came to the car to drop some things off for us. His mom reassured me and patted my hand through the window. His dad gave me a Nats hat, my very own! They understand remarkably well for me so new to me and my stuff. After they left, Kevin repeated those lines a few more times. The pain was still too much, but I was calm. I was back.

I told him, those words were the best comfort/reassurance I've ever gotten during any panicky times. Most guys I've dated ask me "what am I supposed to do?!" even when I'm halfway comatose after fainting. And once they see something like this, they run away. Men have always run away from me because of my health problems. Kevin is the first to stay. And being reassured, "me and you baby, just me and you," reminded me I'm not alone. I never will be.

Tuesday, May 14, 2013

Things...

A picture is worth a thousand words. So here are three.






Love & The Little Things That Make My Days Bright

I meant to post this on Mother's Day, but ya know.... us sick kids aren't always timely with our plans. Plus the meds make us forget stuff. For those of you that don't know me very well, this girl is someone who I have mentored for the last two years and consider her my half-daughter. She often calls me Mommy, and during season I coaches her, she leaves me little love letters in my coaching book. I haven't been able to see her recently, but she'll always be my girl.

The happy Mother's Day text came in on Sunday night. My reply was in the morning. And calling me "Stanley" wasn't a typo, it's one of her weirdly affectionate things.





Friday, May 10, 2013

Negativity Jumped In & I Needed To Check Myself, So.... GRATITUDE LIST A-Z

Does the negativity matter? Probably shouldn't, but it feels like it. Please stick with me, I need to vent the negativity, then I'll get to gratitude. I PROMISE! (Or if you don't want to read the vent, scroll down to the positivity. It's not like I'll know!!)

I'm in the process of losing my house. (I have a stack of medical bills a foot high, most from the few months I was uninsured, some from even with insurance!) And so of course, the mortgage also became very challenging.

POP QUIZ:   How do you pay for out-of-pocket health care and housing when you are too sick to work and you are denied disability by the government?
ANSWER:  Oh, I don't have one, I was hoping you did.

So times are tough. Clearly. I thought I was going to get a renter for my home and I was thrilled. I'd still be a little behind on the mortgage but I'd get a chance to catch up. But then my Realtor screwed the pooch big time, time and time again. So that deal fell through. And now the bank says my "grace period" to put off paying is over.

This leaves me with one real option: a short sale. (Unless any of you are secretly rich and are interested in charity cases?!) In case you don't know, a short sale is when your bank says, okay, you can get out of this and we'll sell the house for a loss. You still may have to pay those months of debt, and the hit to your credit score is nearly as bad as a foreclosure.

Anyway, the girl from the bank I was talking to on the phone about this had a stereotypical valley-girl voice, and was overly cheery. I don't know about any of you guys, but while detailing my health and financial struggles and hearing someone talking to me like that, it kind of make me want to strangle either her or me....just to make it stop. Like, please?!

So I get through it; I'm scheduled to discuss all this with a case manager next week. And she leaves me with, "Well, I hope I've solved all your problems. Thanks so much for being a valued member of the BAC mortgage family! You have a spectacular rest of your day!"

I'm sure some of that is standard shit she HAS to say, but Oh-Emm-Gee, did she actually hear what we discussed??  Yup. Problems solved. Valued member about to lose that mortgage. And spectacular day, yeahhh she definitely wasn't listening to the medical stuff I said. I don't HAVE spectacular days anymore. I have constant pain. It's not spectacular. It's just not.

Here's where I get better. After realizing I can't strangle her, because I don't even know what time zone she's in. And I don't want to strangle myself. That REALLY won't solve anything. And I really don't want to stew in this all day either. So I go through my metaphorical box of tools and think this is a time that calls for a gratitude list. Without further ado, here's my A-Z Gratitude List:

A- Ash, Amanda, Amy S-F, & Alkaline Trio
B- Blaze, Baltimore, basketball, baseball & Bryce Harper
C- Casey, coffee, cardiologists, & coaching
D- Dad, DD3, doctors, & Denny's
E- Erika & Eastern Shore of MD
F- FCB, friends, & family
G- Gavin & gay marriage equality
H- Hockey, Holtby, & hospitals
I- Ice skating & ice cream
J- Jill B for washing my hair when I couldn't
K- Kevin, Kerry, Kali, & Keurig
L- Love & life
M- Moo, M&M's, Molly, Moshe, Mom & mixtapes
N- Noelani, neurologists, & neurosurgery
O- Old-timers & the ocean
P- Pete, Pipeline Soccer Club, PHS, & perspective
Q- Quest Court
R- Rose gardens, red roses, & Reece's Pieces
S- Soccer, sports in general, Steph, & Sara
T- Tattoos, Third Eye Blind, twizzlers, & traveling
U- Undergrad years at Salisbury U
V- Vivian, my new friend & vows
W- Wifey & Warfields
X- X-ray machines. Yeah, I'm a sick kid. Medical technology is super important.
Y- Youth sports, youth mentoring, young love
Z- Zebras, of the Rainbow variety. The almost 22 year old one, and the almost 2 year old one

Tuesday, May 7, 2013

What is your morning routine?

My husband's morning ritual starts out very similar to yours, I imagine. His alarm clock goes off waaaay too early (6am) and he stumbles out of bed. He showers, brushes his teeth, and gets dressed for the work day.

By the time he gets to me, he's just about ready to go. But his hardest tasks are still ahead of him. He has to wake me from a medicine induced sleep, something that is very different than simple, normal sleep. And I've never been a morning person anyway.

5 minutes later (I think) he helps me get dressed. We've laid the clothes out the night before because I'm too groggy to think in the morning. My clothing has to be comfortable and loose or wide fitting on the neck. My scar still hurts too much for the pressure of clothing.

I pee then brush my teeth; simultaneously he takes my purse, meds, and back o' junk/stuff to do downstairs. When I step out of the bathroom he is sitting, waiting on the bed. He leads me downstairs. I fall a lot, so I rarely walk up or down stairs alone anymore. I fall A LOT. Even on solid ground, not just stairs. It's awful.

I take my first set of pills at 6:30 (and every 2 hours after for the rest of the day). Kevin makes us both coffee (some days before I come down, some days after) and brings me an ice pack. He tucks me into "bed" on the couch. I get goodbye kisses and almost always a forehead kiss. Those are my absolute favorite. His forehead kisses make me feel safer than most anything. I thank him for all that he does and he leaves for work. I know within an hour, after he gets settled in at work, I will get a text from him, telling me he loves me.

On the coffee table are two Nutri-Grain bars (already opened to save my dead arm the trouble) my pills, my water, my coffee mug, my reading material, and my to-do list. I am in and out of sleep for the next few hours. I have alarms on my phone going off every two hours, and I have phone calls or texts, from Kevin, alerting me so I don't miss my medication. For some reason I don't have alarms set in the afternoon. By then I'm usually reliably awake. But if he doesn't tell me it's time to take my pill, I often forget.

He rarely shows frustration with my health problems/our life struggles. I often do. I cry almost every morning once he walks out the door. Between the meds and the tears I fall asleep quickly. I try to be strong for him, because he is so strong for me. I am exhausted from the physical battles, the emotional battles, the spiritual battles.

I am ashamed of my current way of life; though I know it's not my fault I've fallen ill I'm still ashamed of it. I feel I am grieving the loss of the person I know of as myself. She no longer exists, in the physical world. Only in our hearts and mind. I miss her. I'm still figuring out who I am now, and it isn't easy to do. I suffer from a loss of dignity in the things I can't do or need help with, but that list is a whole other post--literally, already saved in drafts!

Speaking of, I actually have several blog posts saved in drafts, almost ready to go. This was one of them. Some of the posts to come:
  • things I'm unable to do at all, things I'm unable to do without assistance, and things I've lost
  • my official diagnoses (health terminology and good old normal human speak)
  • and other personal "us" things that keep Kevin & I going



As I mentioned, most of this entry was already saved in a draft, but I decided it was time to post this one because of a blog post I just read What Says Love In Your Marriage? and THIS is it. This morning routine that is so good for me, and so giving of Kevin SCREAMS love to me. 

I've felt guilty for the added burden in the morning. I mentioned that to him last night and his reply shocked me. He told me he likes this new routine. Even though it's a little more work, he gets to start his day talking to me, rather than just kissing an unconscious blob goodbye (our previous morning routine). I'm in awe of his positive outlook and deep love for me. I often feel I don't deserve it, but I sure am grateful for it.


Monday, May 6, 2013

Little Talks

Little Talks is a lovely song by a band called Of Monsters and Men. This haunting duet has sort of become our song... or one of them at least.

The full lyrics are below, but up here I'm going to quote the ones that resonate with me the most. Italicized lyrics are the girl. The few bold are the male....

I don't like walking around this old and empty house
The stairs creak as you sleep, it's keeping me awake
And some days I can't even trust myself
It's killing me to see you this way
There's an old voice in my head that's holding me back
Some days I don't know if I am wrong or right
Your mind is playing tricks on you, my dear


And here is the official YouTube video from OMAM's VEVO page.

 

"Little Talks"

Hey! Hey! Hey!
I don't like walking around this old and empty house
So hold my hand, I'll walk with you, my dear
The stairs creak as you sleep, it's keeping me awake
It's the house telling you to close your eyes

And some days I can't even trust myself
It's killing me to see you this way

'Cause though the truth may vary
This ship will carry our bodies safe to shore

Hey! Hey! Hey!

There's an old voice in my head that's holding me back
Well tell her that I miss our little talks
Soon it will be over and buried with our past
We used to play outside when we were young
And full of life and full of love.

Some days I don't know if I am wrong or right
Your mind is playing tricks on you, my dear

'Cause though the truth may vary
This ship will carry our bodies safe to shore

Hey!
Don't listen to a word I say
Hey!
The screams all sound the same
Hey!

Though the truth may vary
This ship will carry our bodies safe to shore

Hey!
Hey!

You're gone, gone, gone away
I watched you disappear
All that's left is the ghost of you.
Now we're torn, torn, torn apart,
There's nothing we can do
Just let me go we'll meet again soon
Now wait, wait, wait for me
Please hang around
I'll see you when I fall asleep

Hey!
Don't listen to a word I say
Hey!
The screams all sound the same
Hey!
Though the truth may vary
This ship will carry our bodies safe to shore

Don't listen to a word I say
Hey!
The screams all sound the same
Hey!

Though the truth may vary
This ship will carry our bodies safe to shore

Though the truth may vary
This ship will carry our bodies safe to shore

Though the truth may vary
This ship will carry our bodies safe to shore

Sunday, May 5, 2013

Real time

9:29 EST Sunday night, May 5, according to my iPhone.

Where I am going? Home.
From where? The ER
Why? Because my ankle is the size of a baseball.
Why? Because it's infected.

How did I get infected? Because I wore a pair of heels, and they rubbed my foot raw (as the price of beauty is pain).

How did it get SO swollen? Because I thought it was just a scrape and didn't feel the pain until it got SO bad because I'm on an obscene amount of pain meds already. This incident happened days ago.

Highway Don't Care


A month or two ago, Kevin and I had a stupid argument. I literally cannot remember a single detail. But it did end in me saying I needed to go for a drive. That's what I do....

It's what I've *always* done. I've always been the person who just drives to drive, just to get space, just to clear my head. Especially when I first started driving, my senior year of high school (when gas was still LESS THAN ONE DOLLAR per gallon). But that's a different point. This blog is about this fight. 

This stupid fight. This stupid fight that I handled stupidly. And then, the way the universe actually stepped in and saved me from making small problems bigger than needed. Dangerously bigger. Instead, the universe hit me upside the head with this beautiful song, that I had never heard before.

This song started playing just as a turned on the radio. I had made it two blocks away from the house. I stopped the car, found it using my iPhone Shazaam app, and sobbed til I was dehydrated. I turned the car back around those two blocks, then went back to see that amazing man I call mine.

"Highway Don't Care"

By Tim McGraw (feat. Keith Urban & Taylor Swift)


Bet your window's rolled down and your hair's pulled back
And I bet you got no idea you're going way too fast
You're trying not to think about what went wrong
Trying not to stop 'til you get where you goin'
You're trying to stay awake so I bet you turn on the radio
And the song goes


I can't live without you, I can't live without you, baby

I can't live without you, I can't live without you, baby, baby



The highway won't hold you tonight

The highway don't know you're alive
The highway don't care if you're all alone
But I do, I do.
The highway won't dry your tears
The highway don't need you here
The highway don't care if you're coming home
But I do, I do.



I bet you got a dead cell phone in your shotgun seat

Yeah, I bet you're bending God's ear talking 'bout me.
You're trying not to let the first tear fall out
Trying not to think about turning around
You're trying not to get lost in the sound but that song is always on
So you sing along



I can't live without you, I can't live without you, baby

I can't live without I can't live without you baby, oh baby



The highway won't hold you tonight

The highway don't know you're alive
The highway don't care if you're all alone
But I do, I do.
The highway won't dry your tears
The highway don't need you here
The highway don't care if you're coming home
But I do, I do.



I can't live without you, I can't live without you, baby

I can't live without I can't live without you, baby, oh baby



The highway don't care

The highway don't care
The highway don't care
But I do, I do.



I can't live without you, I can't live without you, baby

I can't live without I can't live without you, baby, oh baby
(The highway don't care
The highway don't care
The highway don't care
But I do, I do)
[x3]



I can't live without you, I can't live without you, baby


Friday, May 3, 2013

Some People Don't Believe in Heroes but They Have Never Met My Husband

I named this blog "This Life Would Kill Me If I Didn't Have You" after the country song "If I Didn't Have You" by Thompson Square. It quite literally describes my feelings toward my husband, Kevin.

The quote as the title of this post also accurately describes my feelings. I thought heroes were limited to men and women in uniforms: army, navy, marines, coast guard, air force, police officer, fire fighters, etc.... And I REALLY didn't believe in someone who could be my personal hero, my knight in shining armor, my prince charming.

I stopped believing in fairytales when I was..... actually, I don't really remember EVER believing in fairytales. Now I do. Because my life fits the very basic requirements of a fairytale: my life sucked, I couldn't do anything to make it better on my own, and then with the help of my prince charming and marrying him obscenely quickly, my life got better. We're living our version of happily ever after. It's a little different than the normal fairytale "happily ever after," but it ours.

So, be warned. This blog is sure to not be all about rainbows and butterflies. He's my fairytale, my king, my hero. This is a love story. But like all true love stories, like all real life, sometimes it'll be more like, this is how things suck... But he's my shining light through it all. He always has been, and he always will be.


As life fit that fairytale model, the hero fits the profile as well. He has been fearless, brave, and unfaltering. He set out on a quest. Ever since I met him 8 years ago, he has been on a journey to me. His quest took some interesting turns, like any hero's quest does. In metaphorical ways, he has gone to battle for me, time and time again. Over the years he nursed me back to health, time and time again. (All these steps were his story though, not so much mine...)

And then this year, he rescued me from certain death. That is not an exaggeration. Literally. It is 2013 and this man LITERALLY saved the life of this modern independent feminist. So my faith in fairytales has started, after 26 years of being a non-believer.



The posts that follow will be mixes, I am sure. Stories of his awesomeness. Stories of my sadness. But all throughout I am certain he will amaze me more and more every day.