I am in such a strange place- physically and emotionally. It's just weird.
There are days where I feel fine, and I drive; grab the kids smoothies on the way to dance. Pick up groceries and cook a normal dinner. We sit around the table and talk about the day. Laughing. Realness.
And then there are days I don't see daylight. I'm in my bed, under the covers. Rummaging through my brain, trying to find out why this is happening to me. Didn't I already pay my price? Didn't I already lose it when I had the "great depression" of 2007 after Maeve was born? That wasn't enough? Because in hindsight, its still not anything glorious or heroic. It's plain ugly. It's medicine and horrible thoughts and dark clouds.
I had an appointment with my therapist the other day. He's great- let's me talk and talk and talk, slips in a few helpful tips and always assures me that "THIS IS OKAY." I need that voice- someone to constantly tell me, "You are okay. This is okay. It will all be okay." At my appointment, I reflected back on the year;
February- it was such an ordinary Sunday. I remember it was Sunday because the kids had school the next day and when I had realized I hadn't peed that entire day, I shook with some panic. Immediately went into the bathroom, and tried to go to the bathroom. And that's when I realized, I had to go- but I couldn't. I couldn't go pee. I called my mom and dad, and with my history of kidney and bladder issues, they said I better go into the ER, because not peeing for a day can't be good. I can't really remember that trip to the ER very well. They have all blended into one now, with a few significant ones poking out here and there. I think they put in a foley catheter. And told me to follow up with my urologist.
I couldn't get into the urologist for a few days, and I remember lying in my bed, listening to life outside the door, my foley bag hanging at the end of the bed, thinking "OH MY GOD. CAN IT GET WORSE THAN THIS?" I didn't want my kids to see the "pee bag." So I had Ryan keep them out; they came in at random times to say goodnight, or to give me pictures. And then they'd slip back out the door, my room dark again, and their life, their beautiful, loud, colorful life would go on. I'd cry but, at that point I had hope. I had a urologist appointment and he was going to fix this.
The day of my urology appointment could be marked as one of the worst days of my life- for several reasons. The first being, my urologist at Mayo came without a heart. He might have had a beating organ, supplying blood to other organs, but there was nothing else in there. Without an ounce of sympathy, he said I needed to learn how to self catheterize and make an appointment with neurology because this is MS. I cried so hard I couldn't drive home from Jacksonville. The nurses had to put me in a room they weren't using so I could try and get myself together.
I never saw that doctor again. Though I did write a lengthy letter to Mayo, explaining they had a POS working for them. I still haven't heard back.
Somehow I got home and had arms to collapse into. And thus began my year. My year of collapsing. My year of pain, doctors, embarrassment, confessing, embracing.... I could go on for a long time.
I switched urologists and found that my new urologist didn't have much of a bedside manner either. Maybe my expectations are too high? But can you at least look me in the eye when you say, "This is classic MS, you're going to have to get used to cathing yourself."
A super sweet nurse showed me the ropes on cathing. And as humiliating and embarrassing as it was, she had an angel heart, and made me feel like I was normal. This was normal. This was okay. I'll forever be grateful for her.
With the cathing situation under control, it was time to check out my head.
I found my neurologist via the phone book. Dicey, for sure. But I lucked out. I won't say his name (I still see him) but he's been one of the most compassionate people I've met on this journey.
Immediately he ordered an MRI of my neck and spine. All was clear. I remember texting "my group" (family, close friends)- IT'S ALL CLEAR!!! I DON'T HAVE MS!!!!!!!!!!!!"
I met back up with my neurologist who said it was a great sign that my scans were clear. There was still no set reason for the bladder issues, but he gave it a name; "A neurogenic bladder" and I feel really fancy when I tell it to ER doctors and nurses. It's WAY better than "I can't pee."
Self cathing is so strange. First let me tell you, it's not nearly as bad as you probably think it is. Second, you could do it if you had to. Third, it's an awesome way to introduce bacteria into your bladder. Fourth, if you suffer from infections of the bladder and kidneys, cathing is like blazing a trail for bacteria. I found this out quickly.
And let me also add, it doesn't matter HOW sterile and clean you are, if you cath, you are introducing bacteria into your bladder. THE END.
By June-ish, I had lost count on how many times I had been taken to the ER with a kidney or bladder infection. I was/am officially a frequent flyer at the ER. Thankfully, when I go into the ER, I'm usually sick enough that I don't care. But in my quiet, at home moments, I definitely think about what has become of me- the sickness- the pain- I can't count the number of doctors I've seen, the number of IV's placed in my arms, the nurses who've cried and prayed with me. It's a blur of hospital madness.
In June, I was sick- like SICK, with a kidney infection. I knew it. My back ached, and I was running a fever. The pain was nauseating. But it was Maeve's last performance in her mermaid ballet show. I spend the majority of the show sleeping on a couch in the back dressing room. When it was Maeve's turn to dance I'd sit in the dark wings, watching my girl shine. There was a sense of accomplishment when that recital was over. Because I had been there- I had watched every performance. I had packed snacks, done make up, killed the ballerina bun and took stains out of tights. I was a good mom that weekend. And the moment that last recital was done I waved my white flag.
Someone (I can't even remember?!) took me into the ER and that marked my first hospital stay. I had a bacterial infection in my kidneys. I couldn't walk into the ER- Ryan (I'm assuming, haha) wheeled me in. My blood pressure was low, labs were off and my most vivid memory of that day was my doctor pulling up a chair and telling me I was going to be admitted to the ICU. I was drugged up. I didn't care. But I knew the ICU was for really sick people.
I spent five days in the ICU- my kids weren't allowed to visit. And I had more antibiotics than I think I've had in entire life. Bag after bag was hung. Drip, drip, drip, into my arm... some of the antibiotics made me vomit. Others made me itch. But the nurses were quick with the dilauded and zofran, keeping me out of it, allowing me to hold it together. My mom cried. My dad wanted to transfer me to Jacksonville. I felt like a child; my parents talking in low voices with the doctors. Me, lying there, knowing no matter what, I'd be safe as long as my parents were with me.
I ended up leaving that hospital stay without ever being transferred. I was wheeled out, put in the car like a lump of baggage. We filled my 20 prescriptions at Walgreens, and while we waited for them to be ready, I ate some kind of chocolate thing from Carrabbas. It tasted amazing. Maybe it was because I hadn't eaten in a few days. But I think mostly, it was me, letting go. It felt so easy. It felt like my cozy bed, in my favorite pajamas. Surrendering to whatever this was, and not shutting off my brain to feelings. Because feelings hurt too much those days.
Depression. Have you had it? If you have, there's no need to read my poor explanation of it. You feel it. You know, that no explanation will ever do that awful word justice.
If you haven't suffered from depression, I'll try and make it simple. Everything you thought you loved, and lived for, is questioned. Your very being- what makes you, you, is gone. Vanished- and I haven't a clue where to find it. Sunny days mean nothing. Kindness makes you cry, because you don't deserve it. And your kids... your kids break you. With a single word, they can shatter you into pieces. A quiet, "I miss you, mom" can burn for days. Weeks. During the summer of 2014, I was convinced I was made of ashes. Just burned up words, under my skin.
Depression is not weakness. Depression is the hardest thing I've dealt with thus far in life, and if I were weak, if depression was about weakness, I wouldn't be here. Therefore, I can say with confidence, if you are struggling with depression, you are the opposite of weak. You are strong and stubborn. Holding onto slivers of a fraying life, believing with all you have that it will get better. And that takes immense strength.
I was hospitalized three more times that summer. Twice for kidney stuff and once for gallbladder removal surgery. I ended the summer optimistic; my sister Meghan was getting married and I couldn't imagine things getting much worse. I had paid my dues, right? I deserved a reprieve. A ray of warm sun, just for me.
I can't remember the date, or even the "whereabouts"- September, I'm guessing.... but as soon as one medical hurdle was jumped (self cathing/kidney/bladder/gallbladder issues) another hurdle would pop up. This one, in the form of vision loss (optical neuritis) and migraines.
These episodes (which are now occurring about 2x a month) are so debilitating and painful I become disoriented and desperate. I need the ER ASAP- I need morphine. I need steroids to get my vision back. I've been given medication to take at home when these strike, but so far, I haven't been able to stay out of the hospital. These headache/vision things are unlike anything I've ever experienced. Not only is the pain- indescribable- but combining that with the loss of vision is pure torture. The fear and anxiety is all consuming. And it becomes a race to the ER- a race to get an IV, to get something pumping through me that will restore some sense of security. Maybe someday I'll be able to ride these out at home. But at this moment, the panic, the pain, its too much. I don't know HOW to handle it. I've talked with my neurologist and ophthalmologist, both who've told me its okay to stay at home and treat with the meds they've given me. But each time it creeps up, all I want, all I can focus on is "NO PAIN, NO PAIN, NO PAIN." And off to the ER we go.
Hands down, the worst part of this year, my sickness- MS- or whatever it is, is knowing my kids are watching. They know I'm sick. They know most of the time, mama will not go outside and play because its "one of those days." They know if I'm not in their room to read a story and kiss them goodnight, that they have to bring their story to me, in my bed. It's not even a question. It's just the way it is. They know if I'm not at the dinner table, it's a bad day for me. And when I AM at the dinner table, they go on and on about how they love our big family and "it's the funnest when mom makes dessert." This year- I can't even remember when- (probably around my gallbladder surgery, which rendered me absolutely useless)... we were packing up to take a walk on the beach. Henry asked, "Mom are you coming?" And I said, "Yep!" Like, yeah, obviously- I always go to the beach. And Henry started jumping up and down, "YES! MOM IS COMING! MOM IS COMING!" I cried the entire way to the beach that day.
I am failing these kids. These beautiful babies with the biggest imaginations and hearts, the energy and perseverance to move mountains, are failed daily, by me. It's haunting. At the same time, (as Ryan and I talk about this ALLLLLLLLLLLLL the time), we're not sure what else we can do at this point. When its a good day, we milk it for all its worth. I'm trying to build memories that are strong enough, so happy and sprinkle filled that when I am absent, perhaps those memories will fill in the gaps. Alas, I'm not stupid; nothing will ever be big enough to fill in the gap of me. We all know that. And we skate around it, trying to stay optimistic, hopeful.
There are days the optimism works, and I really truly feel like there will be better days. That this is a crazy hard season in my life; I'm swimming with sharks with bloody limbs. I'm leaving an easy trail behind me- but I'm still ahead, and as long as I continue to swim, I'll get there. I'll make it to my destination. Blood will be lost, no doubt I'll be exhausted, but I'll come out with stories to tell and be a better mom for it. The mom who out swam the sharks.
And then there are days where optimism is nowhere to be found. It's gone. And those are the really, really hard days.
What I'm attempting to do is separate these two extremes; separate them completely. And take each one for what it is. A good day, is a good day, life goes on. A bad day, is a bad day, life goes on.
Something you may or may not know about me is I'm a creature of habit. I love stability. I love knowing what to be prepared for; what's lying ahead. So this whirlwind of a year has been painfully harsh, blunt. Unforgiving. Days pass, things happen, and I'm tossed around like a rag doll. Will I be in the hospital tomorrow? I'm not planning on it. But nothing is a given.
The thing is, this is your life too. This is life. This has been my life for, forever! But I'm just now realizing it. We all hear those sayings, "Life is unpredictable.... We never know what tomorrow will bring." And on, and on. Today, I LIVE by those sayings. It's my sanity. To know that I'm not living an unplanned, chaotic life, separate from the rest of the world... I'm just accepting it now; learning to ride the wave.
With every hospital stay, I tend to read scripture (thank you iphone APPS!:) like there's no tomorrow (no pun intended). Two of my favorite verses that I meditate on are "Be still and know that I am God" Psalm 46:10 (that's tattooed on my wrist).... and "I loved you at your darkest." Romans 5:8
Romans 5:8 may sound like an odd verse to meditate on but let me tell you why this is a verse that is constantly on my heart. When you're hooked up to bags of antibiotics and have a catheter hanging at the end of your bed, your hair hasn't been washed in a week and you're bloated from the steroids, it's pretty easy to feel low. Unwanted. A burden. Ryan will come to visit me and I'll straight up ask him, "Why do you do this? Why don't you just walk away? Look at me." And I'm not talking just physically- I'm speaking deep, down- I am a mess... who would love this? Well, first of all, God. God loves me. He loves me at my darkest. (see? Beautiful verse, right?) And second, He gave me someone that also loves me at my darkest. A whole group of people actually. Ryan, and my beautiful family.
I place so much worth on what I do or how much I do; and none of that matters- not to my family, not to Ryan, not to my kids and certainly not to Jesus. I am loved because I am His. As ugly as this can get; I am loved so deeply.
I say with hesitancy that today I am okay. (because normally when I say "today's a good day!" I end up in the hospital)... but generally speaking, today, yesterday, these days, have been okay.
2015: OH the hopes and dreams I have for you, 2015!!!!
Actually, a lot of priorities have changed from last year to this year. And things that once were so important, are just sort of "there." Not like they're not important anymore, but they're not going to make or break me. I want this year to be a year of healing.
I understand that medically, there isn't even an official diagnosis- so healing may not come from doctors or medicine, and I could end up with more migraines, bladder issues and Lord knows what else,- but I'm speaking of healing in terms of the mind; being in a better place. A different place- where my self worth isn't constantly on the chopping block. I'm getting there. I really am. I'm not THERE... but I have confidence if I continue to remain in His word, tally up my good days, watch my kids and engage with them, laugh, accept my husband's love, even when I feel like I don't deserve it because "THIS"- my sickness, my rollercoaster ride- is too much, my mind will have no other place to go than up.
Okay- so major props to whoever read all of this.
I guess you could call that my "story" of 2014. Like anyone else, I have resolutions that I'm super excited about- I have reflections that I'm thankful for, and I'd love to share them with you- list style though... because all that above sucked the brains out of me...
Thankful Reflections Of 2014
- kind doctors
- nurses- even the grumpy ones...;)
- my family- mom, dad, sisters and brothers- you guys have held my family and I up this year.
- Ryan- there's too much... I'll continue to show and tell you, each day.
- YOUNG LIVING- I try not to let my mind wander where we'd be if we didn't have YL.
- Ningxia Red for giving me energy & deep relief for those migraines, holding me over until we reach the hospital :)
- 4 kids that call me mom even when I feel like I don't deserve that title
- friends- the real ones who love you no matter what. Who don't judge friendship on how long its been since we've last talked... or other silly 1st grade behaviors that I can't even try to get into right now.
- morning coffee with Ryan
- the hugs and kisses from my departing littles :) -There's nothing like a "BYE MOM! LOVE YA!" from your big boy kindergartner.
- Henry's school; the people we've met- the way they treat my little man. What a blessing.
- my dogs.....I know, I know. But sometimes, when its a "bad day" and Ryan's out with the kids, they're my saving grace.
- all of the awesome Bible apps I've found on my phone; many of which got me through some long hospital nights
- my kids' health. THANK GOD, THANK YOU LORD, for their health.
Resolutions for 2015
- be thankful every morning my feet hit the floor
- get lost in my kids; stare in wonder as Henry explains his lego pirate ship. Relish in every cuddle from Rosie, as those are becoming less and less. Laugh at Stella, worry about the mess and chaos later. Study Maeve; my baby who is becoming a girl with more feelings and emotions than I can grasp!
- Grow as a YL leader, by watching the amazing examples the Lord has put in my life. Lindsay, Monique, Nicole- I just love you guys; your smarts & and your selflessness is crazy impressive.
- Okay so this one is WAY out there, but it's been a pipe dream for awhile, and now with the freedom that YL has given us, I MIGHT be able to pull it off; Anchored Hope - a line of tee shirts (baby to adult), based on things my kids say. I have designed a few already and they're STINKING ADORABLE (I think so :) I have no idea what this will be- an etsy store? A few sales here and there? Or something just for my kids? Really no clue- but designing has been amazing, and it turns out my kids are pretty witty. :) Anchored Hope= Hebrews 6:19- look it up :)
- finding a HOME church. As in, not attending as a guest- but as a member. This is so important to me.
- Giving back. We sponsor a child through Compassion International, but we've been talking/looking into other ways to give back- specifically, locally. Coincidentally, there's a HUGE chapter of kids here- YOUNG LIFE- (not young living :) and I'm hoping to get connected with them :)
- No resolution list would be complete without SOMETHING about dieting. I don't want to call it dieting though.... Just eating pure and whole foods. That should be something so natural...
- being a better housekeeper- I'm awful with chores. Always have been- ask my mom. But I'm a grown adult and I've gotta step it up in that area!
- keepin on with that mind training ;) -okay a hospital stay? Not fun. Also not end of the world. Get up, get going.
Okay- so I THINK that's it for now.
Wowza. That's a whole lot... thank you for reading- thank you for NOT judging (if you are judging, kindly take yourself somewhere else, your glass house won't hold up well here. :)
And HAPPY, HAPPY NEW YEAR!!!!
Love & blessings to YOU!!!