Sunday, November 22, 2015

Friendsgiving and a Full House

My mother had three kids and married a man with three kids, so needless to say, I came from a big family. I also grew up on shows like The Brady Bunch and Eight is Enough so I always envisioned having lots of kids someday. The holidays were always fun and exciting, especially when my cousins, aunts, and uncles were included in the festivities.

Then once I grew up and had kids I realized that I am NOT a Brady or a Bradford. Quite frankly, kids make me kinda crazy, so I stopped at two. I would never have those crowded (but cozy) Christmases of my youth, but that was okay. I'd have my sanity. Right? (Shut up.)

Last summer, we were blessed with a third child (can an 18 year old be referred to as a child?) who unexpectedly joined our family after having been in foster care through most of her teens. Bethany rounded out our brood and has made a great addition to our family. Trust me when I say she brings enough fun, excitement, and yes, chaos to the house. Most of the time it's welcomed chaos. ;)

Today, she planned a friendsgiving celebration, inviting her boyfriend and numerous friends and coworkers. There were appetizers, relish trays, turkey with all the trimmings, pies (pies, and more pies), and lots of people.

This unexpected girl who joined our lives has given me a full house after all and I wouldn't want it any other way. I'm not a Brady or a Bradford, but I am a Samples and this is our world.

Happy Thanksgiving, all!

Tuesday, November 3, 2015


I sat down yesterday and began writing another book. I've had about a half-dozen ideas come to me in the last few months, but this one was inspired by a book my husband was cackling about a couple weeks ago. I looked at him and told him I found the opening paragraph to my next book. He looked at me like I was crazy, but since that's not a new thing for us, I just grinned and began typing in an empty Word doc. I read back to him what I'd written and he kinda gave me a blank stare and one of his "whatever works for you, honey" looks. God bless him.

Writing for me has been way tough for the last year. Between Lyme bacteria literally drilling into my brain, medication has taken quite a toll on my memory, as well. Disease has skull-fucked me into oblivion and I'm pissed about it. (Yeah, so much for that peace I talked about in the last blog, huh?) When I'm pissed, I become motivated. So yesterday, I sat down and wrote over 2,000 words in a new story. New characters, new story line, new everything. It was hard and it's probably crap and will be edited into something completely different from what I'm writing now, but I have more voices needing to be heard.

It's encouraging to know the characters are still there and even more encouraging that they want to tell their stories. But most encouragingly, I've been writing like a mofo. I'll take it!

Sunday, November 1, 2015

Fall ramblings

I'm pretty sure I should have been a fall baby. I love this season. I love everything about it - the sights, the colors, the sound of whistles on a football field, the cooler temps, the smell of leaves burning, even the evenings that begin before supper time.

This year, as my physical limitations have kept me pretty grounded to home, I'm learning to become content with my own company. We did a lot of home renovation the last couple months, so I've been enjoying the new digs. It's amazing to me what a little color change and new energy can do to a space.

As I've been spending more time by myself, I've opened my mind and interests a little, exploring meditation and various pagan traditions. I have friends and family who dabble in alternative faiths and it has fascinated me to learn more about other people's practices and rituals. (Before anybody freaks out: no, I'm not worshiping Satan or praying to toast with the shadow of the Virgin Mary burned into it. Relax.) I've just been paying more attention to the elements around me - the moon, the tides, the stars and nature, in general. I've been paying homage to family and my ancestry as well. In doing this, I'm also trying to remove some of the clutter from my life - physically, spiritually, and emotionally. It's been wonderfully freeing for me.

While I do still have a ways to go with my Lyme treatment and subsequent testing for co-infections, I'm finding a lot of peace in letting go of the things that don't matter in the long run. I shredded stacks of old files, papers and notes I no longer needed. I've purged a lot of clothing, personal care products I admitted I'd been hoarding, and many other things that have been gumming up my life. 

I'm finding ways to bring calm and peace to a life that is anything but calm and peaceful. I'm learning that a lot of it has to do with choices. I can choose to be chaotic or I can choose to let things go. Don't get me wrong. Sometimes, you need to be involved and it can create chaos until all the parts fall into place, but I'm trying to do better about choosing peace.

As we head into the holiday season, I wish you peace and lots of wonderful memories with loved ones.

Thursday, October 22, 2015

Lyme Life - update

I posted this last summer after I was diagnosed, but I've added a few thoughts and decided to repost it here:

I was diagnosed with chronic Lyme disease in May 2014, though my doctors and I suspect I've had it for a decade or more. I don't remember a tick bite, nor did I have a specific bulls-eye rash or flu-like symptoms. It wasn't until I suffered significant memory loss, several episodes of Bells' Palsy, and years of pain that I even considered getting tested.

I spent my childhood running around in the yard and the pasture behind our house. We went fishing and camping every summer. And I don't remember our dogs and cats ever wearing flea & tick collars. We were a rural family and we sure weren't going to let some pesky bugs dictate our lives. As a kid, I remember hearing about something called Lyme disease, but I had no idea what it was or the effects it had on its victims. Even as a parent to my own kids, Lyme wasn't something I ever concerned myself with. If anybody got a tick, it was plucked away with a cotton ball soaked in nail polish remover and we went on with our lives.

How foolish we were.

My diagnosis took me by surprise, but at the same time, with all the research I'd done while waiting for my test results, I think I would've been more surprised if it hadn't come back positive. I had almost every sign of late-stage Lyme. In fact, I remember hoping the test would come back positive. Not because I wanted to have it, of course - who the hell would want to be this sick? - but because it would finally give a name to all the shit I'd been dealing with the last several years. 

Like most people with multiple nondescript symptoms, I just wanted an explanation. I was so sick of giving excuses that seemed like bullshit even to myself and I was the one who knew what I was going through. I blamed my brain fog on the anesthesia from my hysterectomy in 2012. My pain was, of course, from sleeping wrong and not seeing my chiropractor as often as he'd suggested. The Bells' Palsy and skin rashes were an allergic reaction to something, I'd said. My deepening depression, growing anxiety and increasingly common mood swings had to be because of stress. Sleeplessness, exhaustion and weird sleep patterns could be blamed on my anxiety and depression. I mean, literally everything could be explained away by something else. But there was only one single thing that would encompass them all and it would finally have a name.

Until my diagnosis, I sucked it up and dealt with life as it came at me. After all, if it didn't have a name, how could I not just deal with shit? I had no excuse, no reason, no explanation. Hell, if I'd known I had Lyme disease three years ago, I could've saved myself thousands of dollars in therapy where I tried to figure out why I felt so fucked up all the time. I still tend to think I'm stronger than I am, more motivated than I feel, more capable than not, and as a result, I get pissed at myself because I end up overdoing things.

Upon diagnosis by my primary care doctor, I spent a month on doxycycline which made me extremely physically sick a few times. Then, when the doxy didn't work, I was sent to an infectious disease specialist who put in a PICC line for IV meds that totally hosed my 40th birthday month. I did feel better for a few weeks after those meds, but by fall, I was miserable again. At that point, my doctor didn't know what else to do. I succumbed to the disease and accepted that it would just be something I'd always have to deal with.

Fortunately, a friend of mine suggested contacting the website to find a Lyme-literate medical doctor. I had no idea what that meant, but as I explored the website (as well as a couple others), I discovered that there are two "schools of Lyme treatment." The first is what most doctors follow. It's set in place by the CDC and it does not involve anything called "chronic Lyme disease." It doesn't exist, according to them. The second school of Lyme is a precedent-setting group who is willing to risk career and reputation to treat what they know is real. LLMDs are regular doctors (general practitioners, OB/GYN, infectious disease, or internal medicine doctors, etc.) who also treat Lyme disease and all its co-infections. They often have to challenge medical labs, insurance companies and other doctors and specialists to do so. There have been times when these doctors have lost their licenses for treating patients like me. There have been lawsuits and medical board hearings more times than not, and the results rarely go favorably. To find a good LLMD is a rarity. In the entire state of Iowa, there are only three doctors (that I'm aware of). I'm very fortunate to have found mine.

Impatience is another very real circumstance. My Lyme doctor told me at my very first visit, "this is not going to go away overnight." I had no idea how right she was. The most frustrating part is feeling like I've made progress and then slipping backward. For every five steps I take, I might get to keep one of them. While not every single day is a battle, the majority of them are. Being in my forties, but feeling like I'm 80 is not fun. I've learned to measure my days by the degree of severity of the symptoms, not whether or not I am experiencing any. Every day, there's pain. Every day, there's brain fog. Every day, there's something I forget. Every day, there's neuropathy. Every day. Some days they're at a one, some days they're a nine. They're never a ten, though because I know there's always room for them to be worse. I've never rated my symptoms at a ten. I hope I never have to.

Mostly, I just miss who I used to be. I was fun-loving, carefree, spontaneous and happy. Now, I have to remind myself to be some of those things, and I am slowly coming to terms with the fact that I will probably never be some of them, too. Spontaneity is rarer for me because I have to stock-pile my energy. Happy is a choice, I'm learning, but I do try to find happy in every day - whether it be something grand or something minute. I still love having fun, but carefree is something I'll never be again.
That part sucks.

This will always be on my mind. Even if I get to the point of being symptom-free, it will always be in the back of my mind like a stranger lurking in a dark alley. My health was something I used to take for granted, but the bottom line is that I will always be sick. There's no cure for chronic lyme disease (only remission), no survival rates, no pink ribbon campaigns and universal sisterhoods like there are with cancer. Thousands of people have it, but nobody talks about it. That's hard. Most days I feel very alone in this. Those are the days when I stay in bed and lose myself in a book (or at least try to - my concentration has been a little sketchy) or Netflix binge. Other days, I pretend I don't hurt just so I can feel normal...even if it's bullshit.


Because I know what people think. Hell, if half the medical community doesn't recognize chronic lyme disease as a real thing, what hope do I have with friends and family who don't have the answers? People who don't know anything about Lyme don't understand that I hurt almost all the time. Or that going to the grocery store or making dinner for my family can put me in bed for a day and a half. Or that traveling can take me out for a week straight. They don't understand that extra stimulation such as a crying baby or a fight between family members makes me want to beat my head against a wall. They think me being asleep at 2 in the afternoon is laziness, or that being awake at 3am is insomnia. They don't understand how painful it is for me to sit at a ball game without moving for two hours. And that even just listening to them vent about work or their kids makes me want to cry because the burden is too great for me to carry. As time has gone on, more friends have learned about how this disease affects me, but making new friends isn't really happening; it takes too much effort to explain this all to them.

I feel like I should be spending my day apologizing to people around me because I'm sick. They have to hear me scream when I'm angry and cry when I get frustrated. They pick up the slack when I don't have the energy to both make dinner and clean up afterward. They work hard because I can't. Most days I feel like a complete burden. I'm working through that guilt, but it's not gone yet. Mostly, though, I just miss me.

I have hope that even if my physical abilities don't return to what they were that my mental capacities do. I'm smart. I'm funny. I'm ridiculously talented with words. But I'm also forgetful, crabby and tired a lot. I'm optimistic and I try and keep my hopes up, but at the same time, I have to be realistic because I don't want to set up false expectations for myself. Eighteen months into this and I'm still working on the balance there.

Most importantly, I try and remember that even those four steps may slip away, I am still gaining ground. Some days I feel okay. I'm motivated and energetic. I do my hair, throw on some make-up and venture out for a short while. It usually tires me out, but I refuse to let this disease dictate my life anymore. It's spent too much time doing that already. I just take things day by day, breath by breath.

 That's Lyme life.

Friday, September 11, 2015

Channeling my inner Nicole Curtis

This was after we discovered the fish tank had been leaking down the drywall.

Everybody's on board for tearing up the carpet. It's the easiest part!

 Boo set to removing the staples that held the padding down while The Boyfriend started yanking up all the tack strips around the perimeter of the room. Both kids worked harder than I had all day.

 Shortly after removing the carpet, we realized we also had a plumbing leak, which had damaged the subflooring. So instead of just having the simple task of laying flooring, we also now have to figure out how to patch the drywall and call a plumber to fix and find the leak in the wall.

It was somewhere around this point that I went from "I can totally handle this" to "Oh my God, what have I gotten myself into? I just wanted a new bed!" Thankfully, we're in a place where we can afford the fixes (watching enough house-flipping shows on HGTV has taught me, if you don't have the budget for things that can go wrong, don't tackle the project in the first place), provided they're not too big. At this stage of the game, they're still manageable.

Yesterday, Hubby and I hit the ReStore shop, Walmart, Lowe's and Menards to pick up the things we need to make the repairs and do the changes we have taken on.  Hauling the usual Walmart purchases (things like cat litter, shampoo & conditioner, and paper towels), four sets of mini-blinds, five boxes of flooring, three  bags of drywall repair stuff, and lamenting about the bait-and-switch faucet we had to buy, everything finally made it in the house by 7pm. Thankfully, a friend of ours was here checking out the water damaged floor, so he helped carry everything in. He also stuck around and helped Nate disassemble our old bed and move it to the office so the new bed can be delivered tomorrow. I ran out of energy somewhere around 10pm. Sleep finally came around 3am after I set in motion an action plan for the rest of these fixes and updates.

Today, though I was tired and in some pain from all the running I did yesterday, I had a lot on my to-do list. Unfortunately, I had a few setbacks. the light bulbs I bought for my bathroom vanity were too big, the blinds for the living room were too narrow, the filters for the furnace were the wrong size, as were the sheets for the new bed. And, because I couldn't figure out this fancy ladder we borrowed from the neighbor, I couldn't reach the peak of the ceiling to scrub the trim. I finally gave up about 2:00, grabbed a Coke, and plopped my ass in front of the TV to watch Sex and the City reruns until my feelings of inferiority subsided.

Eventually, I got back up, put on my big girl panties, and sucked it up. I spent the afternoon patching all the nail and thumbtack holes in office and bedroom, then I got the new new plantation blinds hung in office (including one botched attempt at hanging a support piece that blew out my elbow early in the game). I finished that just in time for the plumbers to show up to give me estimates for the leak in the wall. I hired one and am looking forward to him fixing it on Sunday (without charging me overtime for it being a weekend - go me!). 

After that, I took down the curtain rod in the bedroom, patched those holes and took the Roman shade down too so I can paint around it without dripping on the shade (which I have always loved more than any other window covering). Once that was done, I emptied our nightstands and cleaned them so I can sand them and stain them tomorrow (including removing all the metalwork to be spray-painted). Then I moved all the dressers out from the wall so I could get all the dust bunnies who've taken up residence since we moved in (the last time I cleaned the cobwebs from the corners of the ceiling). I also cleaned the ceiling fan before vacuuming. I was even feeling adventurous enough to wash windows and the trim around them (inside and out, including the gunk in the window tracks). 

I hit a wall of pain and exhaustion about 10pm and rested for a while with some ice on my elbow. Hubby brought me some dinner home and I inhaled that, talked to the girls who were finally home and done with homework. When everybody went to bed, I tackled the bedroom again. 

Almost all our furniture is hand-me-downs or second-hand things we've picked up along the way. This includes a 90's style black lacquer dresser with gold trim. It's functional and in good shape, but it's ugly. Ohhhhhhh, so very ugly. So tonight, I decided to take the outdated mirror off the top, remove all the gold trim, and take off the handles so I can paint those to match the nightstands. I'll leave the dresser black, but the other dresser (which was bought in 1983 by my parents) needs to be painted so it matches the first one. Oh, did I mention in all that I managed to wash and dry 3 loads of laundry?

There's still SO much to do before the bedroom is inhabitable again, today was a success in my book. 

Tomorrow, I tackle the drywall repair in the office and master bath, I will sand the nightstands and dresser, and pick up the paint, a few supplies for that, and the lumber and hardware to make the new headboard. I have to stop at Walmart and exchange the stuff I bought in the wrong size, too. Oh...and I have a doctor's appointment at noon, I have to pick Bethany up from school at 1:45, come home and pick Shelby up after she gets out of school, drop her off downtown at 4:30 and be home by 6pm so I am here when they come to deliver the new bed. I was hoping I would get the bedroom painted tomorrow night, but I think it's gonna have to wait.

For those wondering what crawled up my ass with this Fixer-Upper-Home-Reno-What-the-Hell-do-I-think-I'm-doing thing --- it all started with a bed.

Did I take on too much? Yes.
Is this typical of me? Yes.
Will it all get done? Yes.
Will I spend a month bedridden when all is said and done? Yes.
So why am I doing it? Well, because if I'm going to spend a month in bed, I want it to be the prettiest little place of retreat I've ever seen. It's been the last thing in the house to get updated and it's long overdue. But hey...if you feel like sending me chocolate and hot apple cider, who am I to stop you? *hint hint*

Monday, September 7, 2015

How a new bed leads to total renovation

Most people, when they need a new bed, they just go out and buy a new bed. The process is done once the bed is delivered and setup.

That's not us.

No, see. When we decide to get a new bed, it winds up being a total renovation of half the rooms in our house. How does this happen? Let me walk you through the process. I'll give you a hint: it starts with Pinterest.

  1. Buy new mattress and box springs. Opt to go from the current Queen size to a King so you have more room in bed. (This? This is where the trouble began.)
  2. Decide to move current bed to office, including the beautiful head/footboard you just bought a year ago.
  3. Move office bed to the girls' room to replace the mattress on the floor that one of them has been sleeping on for almost a year.
  4. Decide that since the office is sans bed and it's mostly empty, you should paint it as you've talked about doing for ten years when you moved in to the house.
  5. Realize that your bedroom with its brand new bed on the way also needs a fresh coat of paint. Again, because you've talked about it for ten years and it's high time you get it done.
  6. Since you're painting the bedroom, you should probably buy a new bed so the fresh walls don't get dirty without a headboard behind it.
  7. "Man, king-sized beds are expensive! Let's build a headboard instead!" Begin pricing building materials and realize that you're saving a small fortune by making it yourself.
  8. "You know, if we're not spending all that money on a bed, we can put the new flooring in the office. I mean, it'll be empty. We might as well." You know, because you've been talking about yanking up that gross, dingy carpet for years.
  9. "If we're buying the flooring for the office, we probably should do the bedroom hallway. Oh, and we should also redo the bathroom so it matches the rest of the floors." By the way, this endeavor includes the kitchen, laundry room and master bath. "Even if we don't have the energy to do it all at once, at least we'll have the flooring so we can tackle it when we are able to and won't have to track down matching flooring."
  10. "Awesome! Let's get started!"
  11. Start moving things in office. Realize the fish tank has ruined part of the wall because the filter spilled over the back of the tank.
  12. Spend the afternoon peeling wet drywall and make a note to look up "patching torn drywall" on YouTube later.
  13. Begin tearing up carpet and padding in office and hallway.
  14. Realize there is a plumbing leak in the wall between the office and bathroom that has ruined part of the subfloor.
  15. Shit. "Well, so much for getting all the flooring at once. We've got to throw some money at this repair now. Guess we'll get enough flooring to just do the office, hallway, and bathroom." Note to self: save the packaging and purchase information so we can match the rest of the flooring later.
  16. Let the teenagers tear up the carpet tack strips and staples from the padding while you look up cost of new plumbing parts, drywall spackle, and subfloor pieces. Be grateful the teenagers are powerhouse workhorses who aren't afraid of hard work. Remember to feed said workhorses later.
  17. Have a meltdown.
  18. Curse the bastards on Pinterest.
  19. Be grateful the bastards on Pinterest posted links to fix the stuff that needs to be fixed.
  20. Dry your eyes and realize this is TOTALLY doable and could have been a LOT worse.
  21. Realize that the wall repair you've been intending to do in the master bathroom can be done now that you know how to patch the torn drywall. Go crazy chipping away the warped paint from the water damage in said bathroom.
  22.  Get excited that yes, your house is total disaster, but hey, you get a new bed delivered Friday and you're gonna sleep like a baby...eventually.

Sunday, July 26, 2015

This is NOT OKAY!

The previous blog has been removed by the blog owner to protect Roxanne and her family, as well as to ensure that her legal case against Joe Pata is not compromised in any way.

Permission is NOT granted to use this photo of the victim for any reason.

For those who are interested, a fundraiser has been established to help Roxanne with moving into a new home and purchasing a dependable car. Any remaining funds will be applied toward helping her children work through the tragedy that has struck their lives. Please go here to donate and help spread the word. YouCaring: Roxi's Restart

Thank you for your concern and interest regarding this situation, for the donations, prayers, kind thoughts and words, but mostly for respecting her privacy at this time.

Monday, June 22, 2015

Walk a mile

As I've battled Lyme disease for the last year, I've gone through the full gamut of emotions: depression, bargaining, confusion, denial, and many, many forms of anger -- anger at my doctors for not catching it early, anger at the outdoors, anger at the ticks, and a LOT of anger aimed at God. It's been the hardest thing for me to deal with.

But I experienced something today that put a lot of things in perspective for me.

Today would have been my mom's 77th birthday. I don't usually make a special trip to the cemetery to visit her, but since we were in town today, we took the small detour. We stopped to get flowers and I decided since I was there that I'd also make a quick stop and leave a lily on the headstone of Maria, my bestie's mom, since they're buried at the same cemetery.

My husband and I pulled up behind a car parked along the side of the road in the cemetery and I noticed near Maria's grave, there was a newly-dug gravesite. Wilted flowers were gathered near one end, not far from a clearly bereaved woman who was crumpled on the ground with her hand resting on the fresh dirt. I didn't recognize her (the cemetery is one of the biggest in Des Moines) and I don't make a habit of approaching grieving strangers, so I let her be as I walked toward Maria's grave.

I had trouble finding Maria's stone because I've only been there a couple of times, so I wandered a couple of minutes before I realized she lay to rest only about four sites away from the new grave. By now, the woman stood and I glanced over, catching her eye. She looked overwrought with pain and I was immediately drawn to her.

Softly, I said, "You look like you could use a hug." She nodded and I embraced the stranger. As an empath, I often feel the emotions of those I encounter and this woman was no different. Her pain was an overwhelming loss and it was almost too much for me, but I hugged her tighter. When I pulled away, I noticed a beautiful tattoo on her arm that had been recently inked. It was what appeared to be the face of a teenaged boy. Underneath it was his signature.

I immediately recognized the name and face as a sixteen-year-old boy who was recently murdered, and while I already knew the answer, I asked her if she was his mother. She nodded. 

I handed her the lily in my hand. "I think this will do you more good than the person I brought it for," I said. She took the flower and hugged me again. Realizing I could offer no more comfort (could anyone?), I spoke words of condolence and a promise of prayers for her family and left her again.

My tears fell once my back was turned, and I immediately realized that my anger at God was so foolish. How could I be angry at Him when this mother had so much more reason to be angry than I did? After all, when our children are hurting or sick, don't we beg God to cure them and give us the ailment instead? Don't we tell our kids, "If I could fight this battle for you, I would"?

I cannot fathom the pain of losing a child and can't begin to imagine how much grief this woman must be feeling to have him taken in such a violent way, but I knew that my frustration over a disease that I'm actively healing from...a disease that won't kill me...a disease that I can't pass to anyone else...that my frustration and anger was futile.

I don't know why I got Lyme disease. I don't know why this young man was killed. I don't know a whole lot of anything about why bad things happen. But I do know that I can't...that I won't spend one more minute being angry. I'm still alive. Everything else is manageable.

I continue to pray for this woman and her broken family. I hope you will, too.

Sunday, May 24, 2015

Canasta, for the win!

Yesterday was my Lyme anniversary. It was a year ago that I got the dreaded news that I had been infected with Lyme disease. I'd gotten it years before then, but after years of battling the unknown, it had finally been diagnosed.

In the last year, I've fought for my life - literally. I have felt more pain than I thought a person could possibly tolerate and live to tell about. But worse than the pain, was the emotional strain the disease and its side effects had on my brain. I spent much of the last year struggling with severe memory loss, cognitive dysfunction, questioning my worth, wondering what the point was to my life if it was to be filled with that much pain, and honestly, wanting to die more than I wanted to live. I've always fought depression, but never like this. I'd never wanted to kill myself.

Somehow, though, I've survived. I'm intact. I'm alive! I've had limited pain for the last month. And tonight, I won two games of canasta against my husband. I can't even remember the last time I was able to function well enough to remember how to play the game, much less strategize and win. It's a sign of vast mental improvement.

I'm too nervous to say I'm over the hump, but I definitely see the progress I've made. I have another few months of treatment to go (and at least two months being symptom-free) before I'm considered "in remission" but I feel so much better than I did. Even if this is as good as it gets, I'll take it over what it's been.

I am so fortunate to have the most amazing doctor. She's been such an incredible foundation for me through the last six months. She's literally been at my beck-and-call, providing me her cell number to text whenever I've needed her. She's knowledgeable and trained in Lyme disease treatment and without her, I couldn't have done this. All the specialists I went to over the course of the last year combined didn't do what she did. I am so thankful for her.

Thank you all, as well, for your prayers, kind words, thoughts and support. I am so blessed to have you in my life.

Wednesday, March 18, 2015

Sugar, and spice, and everything nice

I've spent the last twenty years raising kids. I looked forward to when they talked, walked and could become potty-trained. Being able to feed themselves, sit in the backseat without a car seat, and sleep in a big-kid bed were also milestones I anticipated. My husband and I have worked very hard to raise responsible, independent kids who are able to make mature decisions and live successfully as adults.

So, what happens when you succeed?

You lose your shit.

You sit sobbing in your office at a quarter-to-midnight because you realize that your baby girl turns eighteen in fifteen minutes. You panic because you aren't sure if you've taught her enough, given her the right examples, or taken enough pictures so she doesn't feel like she was slighted by the second-child syndrome. 

You struggle to find words profound enough to express how much you love her, how proud you are of her strength, and how you will support her unconditionally as she charges through life, blazing a path of her own.

You think back to when she pouched food in her cheeks like a chipmunk and that time she accidentally knocked her plate of spaghetti on the floor then stood there saying "Taa-dah!" like it was some well-planned magic trick. You think about the adorable way she sneezed as a baby--one full sneeze or two, then a big breath like she was going to do it again but instead she'd let out a sigh and grin. You remember the way she mimicked the pigeons outside her bedroom window and how she communicated with animals before she did humans. You recall when she started learning where her body parts were and she called her tummy her "Buddha", except she wiggled her tongue when she said it and it came out more like "Blubbub". You also can't forget when she finally got that whole toilet-training thing and came running out of the bathroom at the restaurant yelling, "MOMMY! I went ICKY in da potty!"

You realize that the days of reading her bedtime stories, tucking her in, and her waking you up in the middle of the night because of a bad dream are gone, and that the next closest thing you'll get to doing that again is when she lets you take care of her children. HER children!

You pray that you've taught her right from wrong, good from bad, and how to love herself enough to be okay when someone breaks her heart. You hope that you've given her good memories of her childhood and that you weren't really the tyrant she claimed you were when she was "soooooooo mad at choo!"

You remember all those times when you just wished she'd grow up a little bit more quickly so she could do more, see more, understand more...and then you realize she did.

And all you want are those eighteen years back so you can go back and make sure you did it right--that you played enough, laughed enough, and loved enough.

Peanut, you have always been such a bright light in my life. Your heart is so big that sometimes I can't even believe you're mine. Your generous spirit, forgiving nature, and loving personality are my most favorite traits, and I hope you carry them with you always. I love you with all my heart and I am so very proud to be your mom. Happy birthday, baby girl!

Wednesday, February 4, 2015

It's Time to Change

I've thought about suicide many times over the last thirty years. I'm a lifelong veteran of anxiety and depression, and I was recently diagnosed with mild bipolar disorder. All that aside, however, chronic Lyme disease, which has affected my brain on a molecular level, is what has caused me the most issues where my mental health is concerned. This disease has changed who I am as a person and I hate who I have become. I cannot fathom spending the rest of my life this way. So, yeah, I think about suicide.

Pretty morose thinking, huh? I agree. What's probably even more shocking is that I am the one writing it. Mel's thought of suicide? No way! Not me, right? I can find a joke in anything. Why would I want to kill myself? That's ridiculous! She's got a wonderful husband! She loves her kids! She has a great job! She's surrounded by such a great support system! 

But the truth is, I think about it a lot. I just don't admit to anyone. The consequences for admitting so would be too great, and let's not even discuss what would be said about me behind my back and the fodder that could be used against me as a mother.

Mental illness is whispered about like it's some sort of STD you pick up in a seedy motel. Along with that, come the people who think it's an excuse for behaving a certain way...or, the opposite, that people have to behave that certain way in order to be categorized as having mental health issues. Don't forget to add in the side effects from the hordes of psychotropic drugs we're prescribed to fight our illness. And, of course, everybody has their own opinion about how you should treat it effectively ("Snap out of it," is my personal favorite).

There's a social media campaign going on right now called Time to Change. Its main focus is to end mental health discrimination. So right now, I want you to eliminate the stigmas you have in your head about mental illness. Forget what you know because, chances are, you don't know as much as you think you do.

Take my friend, Mike for instance, pictured in the center here:
Mike was one of the happiest people I've ever known. Never without a smart ass comment, hilarious joke or some funny sexual innuendo, he was always the life of the party. He was the first to jump to someone's defense or the first in line to help out. If you needed someone to listen, you called Mike. If you needed someone's ass kicked, you called Mike. If you needed anything, you called Mike. He didn't know a stranger because he wouldn't let them stay one for long. He was a decorated officer of the law and a successful entrepreneur in numerous ventures. He shared his life with his beautiful wife, Laura, and was surrounded by friends constantly. Last summer, Mike killed himself, devastating all of us who were left in his wake. The most overheard phrase at his funeral was, "I had no idea..." We all thought we knew Mike. We didn't. 

Two weeks after Mike was laid to rest, I got the news that my friend Nate died. He was only 24, so even before finding out the circumstances behind his death, I knew it had to have been one of two probable causes: accident or suicide. Not able to fathom that Nate was anything but blissfully happy, I wanted to believe the first. Unfortunately, it wasn't the case.
I met Nate only a few months before his death, but for the time I knew him, we bonded deeply. I felt a kindred spirit in him and, at the time, I couldn't figure out why. I just knew we had it. Nate's heart was one of the most generous hearts I've ever known. His career was on the rise and everything he touched was turning to gold. As a part of the male revue show, Men of the Strip, he'd just been spotlighted on the E! network. He was on the top of the world. Nate was incredibly handsome and talented beyond belief, but his greatest qualities were his extraordinary sense of humor and the ingrained sense of duty he felt when it came to taking care of others. In fact, that sense of duty is partially to blame for his death. Nate always felt it was his job to take care of others -- to love them, to protect them, to make them laugh -- and when his own demons became too much to bear, he left this world in the way he did so he wouldn't become a burden on those who loved him. His family and close friends knew he'd fought some mental health issues, but it wasn't until he died that anyone knew just how big Nate's battle really was.

Another person whose suicide affected me deeply this year was a guy by the name of Chris. While I never met him in person, Chris touched me more deeply than some people I've known my whole life. 
He'd been a regular on Dance Party, USA, back in our teen years, which I used to watch with my mother. Chris was one of her favorites and mine. When Mom became ill with cancer, I would record the shows she missed, and we would watch them together later. She always said it reminded her of when she was a teenager and watched American Bandstand. My mother and I didn't have a lot in common, but that was one thing we bonded over. A year later, when she passed away, Chris and the others were a source of comfort and familiarity for me as I grieved. I've never forgotten what the kids on that show did for me. Last month, during an especially hard bout of bipolar depression, Chris took his own life. He, like both Mike and Nate, was extremely successful in life. He had three amazing kids, he was surrounded by a supporting family and lifelong friends, and, in 2014, he was named Teacher of the Year. He'd spent his whole life giving back to his Philadelphia community. But, also like Mike and Nate, very few people knew just how deep Chris' pain went.

It's so easy to jump to the conclusion that people who commit suicide simply don't know how much they're valued by their loved ones. Or we can't understand their deaths because they had so much "going for them." But the fact is, when you're in a frame of mind where suicide is a logical solution, none of that matters. It doesn't matter how much we're loved, how much success we've obtained, how much money we have or how many lives we've touched. All that matters is finding a way to stop hurting and for some of us, death seems like the only solution. It's not that we want to die, really. It's more like we just don't want to be alive, because alive = pain. And that pain seems never-ending.

I don't pretend to know every thought my friends had before their deaths, but I do know my own thoughts. And voicing these feelings in a public spotlight is the scariest thing I've ever done. For someone with anxiety, the last thing I want is attention focused on me; I know what people will think. I know what they'll say. And I know the assumptions that will be made. But if we want to bring awareness to mental illness and suicide, we have to start talking about it. We have to erase the stigmas, forget what we've heard, and we have to fucking talk about it.

We can't just light a candle and hope the problem goes away. We have to roll up our sleeves and reach out. We have to be honest with what we feel ourselves and we have to be willing to listen to those who are brave enough to speak out instead of act on their feelings.

This isn't a problem we can throw money at in hopes of finding a cure. Mental illness doesn't work like that. It takes being down in the trenches and getting soaked to the skin before you can make a difference. Will you do it?

Mike needed this. Nate needed this. Chris needed this. I need this.

If someone you know shows signs of depression, has thoughts of suicide or you've noticed they're just not dealing with the stress of life quite as easily as they used to, please reach out to them. Be an ear, be a shoulder, be a friend. If you can't help them carry their burdens, encourage them get in touch with someone who can: a therapist, a doctor, a mental health support group, or all of the above.

If you are having trouble getting through your day and thoughts of dying seem more promising than thoughts of living, please talk to someone. If nothing else, find help here:

National Suicide Lifeline: 1-800-273-8255

It's #TimetoChange

* My deepest gratitude to the McBride, Estimada, and Tully families for allowing me to honor your loved ones in this small way. As always, I pray for peace and comfort for your families.

Wednesday, January 14, 2015

Lyme Life Update

I was going to put all this in a FB status and realized it's easier just to put it all here.

I had an appointment with my Lyme doctor today. Let me just tell you how amazing this woman is. I couldn't ask for a better physician. At my first visit, we sat together going over symptoms, side effects and treatments for more than two hours. She didn't even leave the room. Today, we sat for an hour together going over what's working, what's not and how I'm feeling compared to the last visit. She's never in a rush, never trying to push me out the door. She even gave me her cell phone number so if I have questions between visits, I can reach her easily. She is incredible and has restored my faith in traditional medicine.

Last month she put me on three hard-core antibiotics. I dealt with a lot of nausea and had to orchestrate each dose carefully so I didn't take anything on an empty stomach. I'm hoping that's not the case this month, but I'll be taking precautions. Now, we've gotten rid of two of those original medicines and I'm on three additional ones. This puts me on a total of four antibiotics and six supplements. Add to that two daily pain killers, a sleeping pill, an anxiety pill, and two pro-biotics I have to take so the antibiotics don't give me an infection. Some of these pills are taken once a day, some twice. Some are switched over mid-week so my body doesn't get too used to one medication. I feel sometimes like this is all a giant game of keep-away/sneak-attack with the Lyme bacteria. I am also on a restrictive gluten-free, dairy-free and sugar-free diet. I can have minimal foods with those ingredients in them, but the more I have, the worse I feel. The last two weeks has been proof of that. The good news is that I'm learning how to better deal with what I can't have. I've found substitutes for some things and others, I just do without.

I've lost count of the number of pills I take on a daily basis. I think it's partly due to the fact that I hate that I have to take so many. I've always been such a homeopath when it comes to medication and trying to heal the body naturally. But the bottom line is, this is the fight of my life. Literally, it's a fight for my life. With the wrong treatment or too-aggressive of a treatment, I can have organ failure. Already, my body has gone into menopause because of the disease itself. The doctor is optimistic that once the Lyme is under control that normal ovary function will return, but in the meantime, I'm on two hormone replacements. So this isn't just some fatigue and arthritis I'm dealing with. It's some serious stuff with very real consequences.

One of the concerns I had, given my history with ovarian cysts was that I had another one. I've been having a lot of abdominal pain on the left side (reminiscent of what I had before my surgery in 2012 to remove my right ovary). At first I thought it was ovulation pain, but when my doctor told me a few weeks ago that I'd gone into menopause, I knew that wasn't it. We're still not completely sure what the problem is, but thankfully an ultrasound showed that my left ovary is perfectly normal and not cystic. Since surgery at this point in my treatment could send me back to square one, this was a true blessing.

My doctor has also begun treating me for bartonella (I told Midget I have Barton Bellas...unfortunately my version is pretty aca-awful), which is a common co-infection with Lyme disease. Bartonella is also the cause of cat scratch fever (not to be confused with the one Ted Nugent sings about. I think you'll need an ointment for that one). (Isn't it good to see I haven't lost my sense of humor in all this?) Since Bartonella tests aren't very sensitive (means that you can have it and the test can still come back negative), she's decided not to make me go through the expense of it. Since bartonella can be passed through ticks, fleas, body lice and through cat scratches, it's hard telling how I got it or when. We just know that it's likely I have it based on my symptoms and since it's treatable with antibiotics (hey, what's one more, right?), we're moving forward with treatment.

Overall, I have good days and bad days. On the good days, I tend to push myself without realizing it. That's one of the troubles with chronic illness: when you feel good, you want to leech as much from the day as possible but sometimes that can set you back days, if not weeks. I felt really great last week and over the weekend, so I (with Midget's help) put my office back together, which consisted of moving furniture and LOTS of boxes and totes. I'm paying for it now with pain and muscle fatigue. Those are what define my bad days (along with mood swings, mental fog and complete exhaustion, among other symptoms).

I try very hard not to complain. A positive attitude is vital to get through this but I never imagined being this young and feeling this old. Unfortunately, it's a reality and something I'm going to have to deal with for quite a while still. I've learned to control the things I can control and let go of what I can't. I've had to learn to say "no" more often. I've also had to let go of toxic situations and people. I've grown distant from some friends and lost others altogether, but I can't focus on the losses, only the gains.

One of those gains has been how supportive my family has been every day. They've really stepped up and done what needs to be done around the house. Hubby hasn't complained once about my mood swings or the days when I have no energy to do anything. And the kiddo has totally gone out of her way to do more than her share of chores to help pick up my slack. I could not imagine dealing with this disease without their support.

I probably won't update again for a while, but since so many of you have asked and have seen updates so far, I wanted to let you all know what was going on.

Long story short, I'm not in remission, but I'm on my way. I'll take it. :)