Monday, October 17, 2016
Sunday, September 11, 2016
It's been 15 years, but I am certain you know exactly where you were and what you were doing. I know I can.
It's hard for me to think about that day. My kids were still so young and, as far as real life goes, I was still fairly naive. Living in the Midwest tends to create a safety net that makes us a little disconnected with things that happen elsewhere in the world. We still wave at cars as we pass them on gravel roads. We know our neighbors - if not by name, at least by face. We still tend to leave doors unlocked sometimes and we trust that our kids know where they need to be when the streetlights come on at dusk. That day changed all that for everyone.
I can't tell you what it was like for people in Pennsylvania, Washington D.C., or New York City that day and I thank God that I can't. But for me, and I'm sure many others, it took away my sense of security. I locked doors again. I looked at people in public with scrutiny instead of recognition. I was more protective with my kids and where I allowed them to be - all the time, not just when it started getting dark. And I worried. Day. Night. While I slept. I worried. I still worry. As my youngest child is just weeks away from signing a contract with the U.S. Marines, I worry. With my oldest child living 700 miles away, I worry. I worry for my grandchildren who haven't even been conceived yet. I worry for friends living in big cities where this could potentially happen again. I worry. I worry. I worry.
In October 2014, my husband and I visited the 9/11 museum in New York. I'd been to Ground Zero at least twice before that, seeing it at varying stages of rebuilding and was profoundly affected each time. But to see, touch, hear, and even smell (yes, some scents never go away for those of us with empathic abilities) the relics and memorabilia from that fateful day was more than I could handle. I sat outside for quite a while after visiting the memorial and just cried. Grief? Sorrow? Pain? Survivors' guilt? A combination of it all? I can't go back there again, I do know that much. But I encourage everyone to visit it at least once in their life. 9/11 changed us all, but that museum will change you all over again in a completely different way.
As always, I honor those who lost their lives that day, as well as those who survived. I share your pain and my strength with you all.
Thursday, September 1, 2016
I want to state blatantly, though, this post isn't for sympathy or for someone to tell me how strong I am. I'm not. I'm a survivor. That doesn't make me strong. Please lend your understanding, but keep the sympathy for someone who deserves it.
Lyme disease is caused by spirochete bacteria (they look like little corkscrews) called borrelia bergdorferi. They are typically vomited into the body by a tick after it bites and feeds on your blood. Sometimes there's a rash and flu-like symptoms. In my case, there were not and I don't remember the bite. So, I could have had it from just a few months before testing positive, or I could've had it since I was a kid...or anywhere in between. Symptom wise, I believe I was infected somewhere between 2004 and 2007. For those who are immediately diagnosed, treatment is quick, usually simple and while the antibodies are always there, generally speaking, it's "cured" by most definitions. Testing is incredibly difficult because accurate testing has not been developed. It's a hit-or-miss kind of thing, so the fact that my tests came back positive is miraculous enough. Most Lyme patients don't get solid proof that they have it.
For those of us who are bitten and don't realize it, it turns from acute Lyme disease to chronic Lyme disease. It's also incredibly difficult to treat because the CDC does not recognize chronic Lyme disease as an actual disease. They (along with most medical doctors) believe that once a round or two of antibiotics is administered that the disease is cured. Any symptoms beyond that treatment is considered "post-treatment Lyme disease treatment" and "in rare occasions lasts more than six months". Considering the hundreds of thousands of people with ongoing Lyme disease, this is not the case. It's not "rare" that it lasts longer than six months. Almost everyone who has been treated for Lyme disease beyond the immediate period following an infected tick bite goes on to suffer from months and years of ongoing symptoms, if not a lifetime of fighting relapses and risks of reinfection. It's important to know that while the CDC is one of the most knowledgeable sources on most diseases, for years they refused to recognize the sheer volume of patients diagnosed with Lyme disease. They hid the truth from the public, and they've hidden treatments, tests and other truths about the disease itself from those who suffer from it. I caution anyone with Lyme or if you think you may have Lyme to research as much as you can, but seek treatment from a Lyme Literate Medical Doctor. These doctors have been specially trained and certified for the diagnosis and treatment of Lyme disease and its co-infections.
Anyway, back to my truths...
Those corkscrew bacteria are Satan in a molecule. They are like teenage boys: they screw EVERYTHING. Cells, organs, blood, tissue, muscles, brain, eyes, ears....you name it and it's going to penetrate it. In the late-stage chronic lyme sufferers (like myself), when it penetrates the brain, it literally drills into the gray matter in your skull and permanently damages everything in its path, microscopically speaking. For me, it started in my thyroid and moved up my spine, through my cerebellum and into my temporal lobe. It has affected memory, hearing, speech, body temperature balance, ability to think of correct words and phrases, moods, and caused me increased sensitivity to noise, temperature and smell. I have muscle fatigue, pain in most of my joints, exhaustion in general as well as everything I mentioned above. Sometimes, I have good days. Most of the time, I'm average. But my bad days are bad. Those are when I stay in bed, limit my interaction and sleep - not just for recovery, but for the sake of saving relationships because my moods are volatile and I can't control them well. Anxiety attacks can come out of nowhere, last for hours and take days to recover from. So can bouts of rage and anger. These mood swings zap energy from me and it takes me a long time to get over them, much less the repercussions of the people who are in the path of my tornadic destruction.
It also affects my balance, my equilibrium, my organ function, my immune system, my breathing/cardio abilities, and my energy levels. You'll sometimes hear me refer to having -or not having- spoons. That's based on the Spoon Theory, which describes what many chronic illness sufferers deal with: http://www.butyoudontlooksick. com/articles/written-by- christine/the-spoon-theory/
Again...the symptoms aren't all the time...and not all symptoms at once (usually)...but my bad days can cover quite a few symptoms in varying degrees of strength.
As far as the timing of my diagnosis, I can only go off of what my symptoms were and when they developed. While depression and anxiety have been lifelong issues for me, the majority of the other symptoms began in the mid-2000s. My mother-in-law remembered me talking about being bitten by a tick in 2004 after we'd taken in some baby bunnies who'd been abandoned by their mother, and I remember picking numerous ticks off of them when we first brought them inside. I don't remember the bite, but my MIL did. By January 2008, I had dealt with several episodes of Bells Palsy (where it looks like somebody's had a stroke and half their face is sliding off their skull), which is usually a symptom of late stage Lyme. I had major health issues in 2012 when my reproductive organs began failing. I lost my right ovary in Feb 2012 to a dermoid teratoma tumor, then lost the uterus and cervix in May that year. Six months later, I went back under the knife a third time so the doctors could repair what didn't heal correctly. Menopause began shortly after that and I've dealt with numerous hormonal changes. This was also when the major mental and emotional issues began. They never seemed to get better. I blamed all the anesthesia, but as it turns out, most likely, it was Lyme related. I was finally diagnosed in 2014 at the urging of several friends, and it has pretty much consumed my life since then.
I have taken a plethora of antibiotics, both oral and intravenously. I have changed dietary habits, added numerous vitamins and supplements, hormone replacements, anxiety and depressive medications as well as hordes of natural and homeopathic regimens to help ward off the symptoms I deal with.
I have, during the course of my treatment, felt suicidal and hopeless more often than I care to admit. I also push people away who either aren't strong enough to deal with the ugliness of this disease or lack the strength of dealing with me while I fight this disease. I am incredibly difficult to love right now. I tend to keep to myself as often as possible.
Again, I don't want sympathy or pity. But I will happily take your acceptance. I'll take your attempt at understanding. I'll take your commitment to learn more about it. I'll take your proactive approach to preventing it in your own lives and the lives of your pets and children. I'm not strong. I'm not a hero. And I don't deserve your admiration for persevering through this hideous disease. But I will gladly help you learn more so you don't wind up like me.
Saturday, July 2, 2016
Home is a strange word, sometimes. It can describe a hotel room for the few days of a vacation. Maybe it's referring to where you grew up. It might be your home town, or where you graduated high school.
For me, home hasn't really ever been a specific place so much that it's feeling that I'm somewhere with my people who get me.
Tonight, I'm 1,000 miles from where I live, but I am home.
Sunday, June 26, 2016
We literally hadn't spoken in over two years, so my thoughts are, if you couldn't at least drop a note, LIKE a post, or comment on something I said, then there's not much to catch up on. I needed my friends the last two years. NEEDED them. Not just for a listening ear or a shoulder to cry on, but literally, physically needed their help and support. She didn't give it.
So, for the first time in my life, I used my strength and turned down an opportunity to "catch up" with an old friend. I explained that over the last few years, I've learned who my friends are and who they aren't, and considering she hadn't spoken to me since 2014, it was pretty clear to me which category she fit into. I was polite. I was to-the-point. And I don't feel guilty. I'm taking my life back.
Sunday, June 12, 2016
My precious friend,
You are the reason I became an advocate for gay rights.
Of course, at the young age of 16, that was back before I knew what being an advocate meant, or even that gays didn't necessarily have the same rights as straights.
Before I met you, I was raised in a politically and socially conservative home. People were good solid Christians, they didn't cheat on their spouses, men didn't sleep with other men, motorcyclists were all Hells Angels wannabes, and every Sunday night we watched the Disney Movie of the Week on ABC. That's just what we did.
As I grew older, I didn't know anyone who was gay and out. Obviously I had gay friends, but at the time, I didn't know it. They were just either "secure in their manhood" or a "tomboy." I'm pretty sure the only time my mother ever explained to me anything about homosexuality was when I asked her the difference between being gay and being lesbian. She said, "lesbians are women." That was the extent of it.
Then I met you. You, in all your babouscka-wearing glory prancing in that parking lot donning a darling pair of boat shoes, a bouffant hair-do that made me incredibly envious, and the best sense of humor I'd ever experienced. You were out and proud of who you were, and you didn't give a damn who knew it. You didn't march in any parades, nor were you begging people to accept you as you were. You didn't feel the need to explain anything or justify yourself. You just were. You were perfectly you.
My whole life changed that day. I began opening up my mind and realizing just how closed it was in the first place. I accepted you without question because I loved you, and to me, it didn't matter who you slept with or what you stood for. I just knew you were one of the greatest friends I'd ever met. I valued YOU; the rest of the package was superfluous.
You are the reason I am able to accept, love and support my gay daughter and everything that's important to her.
YOU did that.
Thursday, June 2, 2016
When it comes to waiting for the perfect shot, I have infinite patience. It's pretty much the only thing I have patience for, actually. But I rarely expect anyone else to wait with me. Not many people I know understand my process because they're not artists themselves, but my bestie, being the infinitely patient person she is, sat with me as I took photo after photo. We sat on those cold rocks shivering for about an hour. The tide came in, the air got colder, but for that hour, I was at total peace. It was the perfect ending to a wonderful day.
With three kids and a hardworking husband, my life is filled with schedules, deadlines, and activities. My house is always noisy, people are always coming and going, and I don't have a lot of time where I can just relax. But for an hour, on the shores of Malibu in February 2013, I was at total peace.
Saturday, February 6, 2016
Fast forward twenty-some years and at least a thousand books I'd devoured.
Writing my own book came as a fluke. A friend of mine discovered an old fan fiction story she'd written in high school, and we noticed that she'd put me in it. My inspiration came from that story. What had "I" done prior to being in her story? Where was "my" history? Bottom line is that she hadn't written one. "I" was a superfluous character. I wasn't okay with that. So, I began writing My Book. That was the title: My Book. Catchy, right?
Four years, at least three sets of name changes, and a lot of editing later, I published my first book, Distance and Time. I never planned on publishing it, much less making it a series. I was perfectly content with my one, silly, little story, but my friends weren't. They urged me further. I was happy with what I'd done. I was okay with it. "Josh" and "Carly," however, weren't done. Before I knew it, I was writing Better in Time, the second book and the finale, All This Time. As I neared the publication date for book three, Distance made it to #154 on the Amazon bestsellers list (out of over one million books). My mind was blown. I cried with joy for days!
Yesterday, I released the final book in the series, All This Time. My entire Time After Time series has been published. Each book has its own set of great reviews, and I have written a best seller. If, at any point, I decide to stop writing, I am profoundly comfortable with my success as an author, and I am grateful to each one of you who helped me with that journey.
I did it, Mom!
Distance and Time (Time After Time, #1) Kindle
Autographed paperbacks: $15 through me, incl. shipping (Contact for details)
Free on Kindle Unlimited
Better in Time (Time After Time, #2) Kindle
Autographed paperbacks: $10 through me, incl. shipping (Contact for details)
Free on Kindle Unlimited
All This Time (Time After Time, #3) Kindle
All This Time (Time After Time, #3) paperback
Autographed paperbacks: $15 through me, incl. shipping (Contact for details)
Free on Kindle Unlimited
Amazon UK Links: (Free on Kindle Unlimited)
Distance and Time (Paperback)
Better in Time (Paperback)
All This Time (Paperback)
Saturday, January 9, 2016
I'm in such a great place right now. Truly. It's so different from where I was last year at this time. I'm still dealing with Lyme disease, but thankfully, it went on vacation a few weeks ago and, knock on wood, the symptoms have been almost completely gone. I'm starting to get some energy back (though I still battle with fatigue and exhaustion sometimes) and my brain fog is also at an all-time low. I'm also recovering from carpal tunnel surgery that I had last month. My strength is returning quickly and I'm ridiculously pleased with my surgeon and the work he did. My hands feel better than they have in a long time. I have several weeks to go before I'm back to normal, but all roads seem to indicate I'll get there soon.
The family is crazy as always. Big Man has been at his job for about six months now and loves it. He moved out into his own place and has been adjusting well to bachelor life. He graduates from DMACC in May and is well on his way to incredible success with his company. Boo has been working her butt off and saving money to get her own place. In the meantime, she's just enjoying life with her boyfriend and friends. She will be returning to school in the fall. Midget (I don't know why I still call her that - she's 4" taller than I am!) is in her senior year of high school, and if all things go as planned, she'll graduate in May. She's planning on taking a few months to enjoy a pressure-free summer, then will be enlisting in the military. I'm so proud of my kids and proud of where they're going in life. They make life so much more interesting! Hubby, too, is doing great. This marks year 11 with his company and he loves it as much as he did at the beginning. It's challenging and stressful at times, but he's never been one to back down from a challenge. After all, he married me 15 years ago, right?
I'm gearing up for a new book release in February and cannot be more thrilled. Becoming an author was the best choice I've made, aside from my family. It's allowed me to meet so many people whom I've become close to, and I know there will be so many more joys to come. The feedback I've gotten on my books has been so encouraging and positive. I can't say enough about how great my readers are. I see hateful, negative reviews on so many other authors' pages, and it breaks my heart. I'm sure my day is coming, but until then, I feel so fortunate to have the readers I have.
I don't really have any great epiphanies to share with you today, and I know my blog posts have been further and farther between, but I wanted to catch y'all up on life at my house. I hope everyone's new year is healthy, prosperous and filled with love and good memories to be made.
Sunday, November 22, 2015
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
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
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.
Thursday, October 22, 2015
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.
Fortunately, a friend of mine suggested contacting the ILADS.org 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.
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.
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.
Friday, September 11, 2015
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.
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!).
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.
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*