30 Day Chronic Illness Challenge (Days 11-14)

Day 11: My God is loving and sometimes bad, shitty, unfair things happen. That doesn't mean God or a HP is punishing someone... So I'm going to go with bad luck and bad genetics. And partially, being on too many antibiotics my entire life.

Day 12: That's nearly impossible to do. But I have a draft of just that already in the works! Imagine your stomach flu, year-round. And the feeling of stubbing your toe on a dresser all over your whole body. Oh, and not being able to use half your body--don't reach up on the top shelf with that arm! Don't put too much weight on that foot! Oh, you took a shower in the morning? Guess what, you're not leaving the couch for the rest of the day. Your knee has seen 5 cadaver ligament grafts, so to compensate, we're going to remove your body parts. Then literally doctors say things like, "You don't need this muscle. You can do without that rib. But don't dream of doing any of the stuff you love again, because let's be realistic, kiddo, it ain't happening."

Day 13: I object to the intelligence of whoever created this. Effing duh. Yeah, I was basically robbed of my entire life as I know it, but mentally I'm peachy keen. Stupid.

Day 14: Well, that's a jackass question to follow up the previous. Fine. 1-Blaze. His whole existence. Him snuggling me all day long. The sweet way he smells. The loud way he snores. And the beautifully vulnerable side he only shows to me. 2-Kevin. He has quite literally, on purpose, given up his life as he knew it to take care of me. He does just about everything for me.

3-My Dad. Duh. He's my other most important man besides K & B. He takes care of me too. He still does some doc appointments, though usually Kevin is able to. But prior to April, Dad did them all. He has also been saving up vacation days in anticipation of whatever surgery comes next.
 

4-Good therapy. I've been in and out since I was 7 years old. I have had incredible therapists. And I have had mentally special therapists. Currently, thank God/Jesus/Virgin Mary/Goddess/Allah for her, because, well, see question 13. Mentally, I'm a mess. Let's just be honest about that. I'm a hot effing mess of mental shit. 5-Having health insurance again. Let me paint this picture for those of you who don't know, if you're still reading at this point. I lost health care a little while back, because of preexisting conditions. I'm going to dumb that down one step further: I lost health insurance because I was sick. You thought health insurance was supposed to help people when they're sick? Gosh, me too. Wrong.
On a related political note, this is why I want to rip people's eyeballs out when they hate on "Obamacare". Look, be a Republican and hate on Obama all you want, that doesn't offend me. But typically when I hear criticisms about Obamacare, it's people making these arguments and claims that it's just another handout to lazy people. Maybe some people abuse the system, sure. But do you know how hard it has been for me to get disability? I still haven't received it. Do you know that if all aspects of Obamacare were already into effect, I wouldn't have gone months without health insurance. Do you know what months without cost a person like me (who is on about 15 prescriptions and probably averages 4 office visits a month (not counting PT, only doctors)? I'll give you the ballpark: I'm in a 5-digit figure of medical debt. And separately, but related because of not being on disability though I am disabled (therefore no income) I'm also in a totally separate 5-digit figure of debt over my home in Baltimore. Uhh yeah, awesome? Refer back to good therapy

I'm skipping 15 because I don't like it. Thanks for reading my rant of the day!

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.

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!

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.

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.

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

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.