Wednesday, November 25, 2015

Thankful for What?

It's no secret that this has been a hard year (hard few years, to be clear). And WH and I have been struggling. It's easy to get lost in that struggle, to forget that there is sunshine, to wallow. As Thanksgiving and the holiday season approaches, it's a stark reminder of what we don't have. But that's a rabbit hole I'm trying very hard not to let myself fall down.

I could easily think about how WH and I aren't able to be together. But instead, I'm thankful that we have each other. That we are in this thing together. That we bolster each other on those days that seem darkest. I'm thankful that we haven't lost each other even as we have lost so much else.

I could let myself feel all alone. But instead, I'm thankful for family and friends who have given of themselves to make sure that we aren't alone. To make sure that we feel loved. These warriors in our army have given their time, their money, their tears, their souls to make sure that we feel supported.

I could despair that we're not going to cook dinner together and sit around in our comfy pants after our Thanksgiving meal, dozing off in front of the TV. But instead, I'm thankful that our families will be together. Maybe it's not in the way we all wanted, but we will be together. Laughing, eating, loving, enjoying -- because we are suvivors.

I could look back at this awful, awful year and wonder where has it gone. But instead, I'm thankful for the time we had this year to keep fighting. For the time ahead of us that will surely bring better days and relief and wellness. Time -- it's the greatest thing we have as we continue to fight.

No, friends, I am not going to get lost in the quagmire that we've been slogging through. I'm going to hold my head up, power forward, and be thankful for the incredible gifts that we've been given this year. Because even through all of the loss and illness and struggle, we have been pretty damn lucky. And I know that there's more good to come.

If you would like to learn more about we're going through or help us as we battle this monster, please visit our YouCaring website.

For more information about environmental illness, mold, and mycotoxin poisoning, read here, here, and here, and watch video here.

Sunday, November 22, 2015

How are you?

People ask me a lot how I'm doing. How WH is doing. It's always hard to know how to answer this question, because the truth is: not good.Sure, we have good days and good moments, but mostly we are struggling mightily every day. And when someone asks, "How are you?" it's always hard to know if they are asking because that's what people do, or if they really want to know. I have grown to hate this question. I hate having to think about how I am, how we are, and then having to answer it. Mostly I just say "fine," and force a smile.  But I can't remember the last time that, "I'm fine" was the truth. Because I'm not really fine.

I haven't had a hug from my husband in months. My clothes are so contaminated, and his sensitivity so severe, that me getting close to him makes him feel worse. I can remember what it feels like to hug. And that's what I have to think about when I go to bed at night, without him. We are alone together . . .

That whole "Netflix and chill" thing? Yeah, we can't do that. My husband lives in a hotel, and I can't go there (see above, re contamination). Sitting on the couch together watching a movie and chilling out . . . I can't think of anything closer to heaven.

We eat out all the time. Sounds luxurious, right? It isn't. We have no choice. It's the only way we are able to see each other. If I never eat in a restaurant again, it will be just fine with me. Cooking is a simple pleasure that I miss more than I realized I would. I long to cook for us both and enjoy a quiet meal, just the two of us, no waiters, "ambiance," or other people around.

Every day, I look at the weather forecast with trepidation. I may be the only one thankful for the unseasonably warm fall we are having, because my husband can't find a coat. The fabrics exacerbate his symptoms (think about it...most of our clothes are imported, often by boat. Boats are prime breeding grounds for -- you guessed it -- mold). Can you imagine not being able to find clothes to wear, or a warm coat? Eventually our luck will run out and the weather will turn, and he will have no warm clothes. This is our reality and I am heartbroken by it daily.

Our lives are consumed with worry. Will it get cold tonight? Will the place we've chosen to eat have put their dusty Christmas decorations out yet? Will the hotel rates fluctuate higher this week? Will the doctor call back? Will the contamination spread? Will the pain be bearable today? It's like a chess match, constantly, and you never get to stop thinking, stop worrying, stop moving the complicated pieces around the board. 

I don't mean this as a pity party. This is our reality. We are surviving it day by day. And we are finding bright spots. We are surrounded by unwavering, unbelievable love and support. There are rays of light in all of this, but there are also a lot of clouds.  So, just know if you ask me how I'm doing, even if I say, "I'm fine," I'm not.

If you would like to learn more about we're going through or help us as we battle this monster, please visit our YouCaring website.

For more information about environmental illness, mold, and mycotoxin poisoning, read here, here, and here, and watch video here.

Thursday, November 19, 2015

What You Can't See

There's a lot about mold exposure and environmental illness that seemingly makes no sense. There are a lot of unknowns and even more "unseens" that make it a mystery, not only to the doctors and providers who are treating it, but to the person who is suffering from it. I have learned a lot about all the things you can't see simply by listening to and learning from my superhero husband.

What you can't see is the constant pain he is in. He looks like the picture of health, but inside he's hurting. He can't buy warm clothes because many fabrics are also contaminated. So much of what is in stores has been imported, often by boat (a prime breeding ground for mold), and the fabrics irritate him. He can't find a warm coat right now -- so we are not looking forward to the colder days that are invevitably coming. While he is smiling on the outside, my warrior husband is suffering on the inside. But he'll never let you see it.

What you can't see is contaminated environments. Despite being a new building, recently cleaned, or looking nice, some things aren't what they seem. There have been countless times that we've walked into a restaurant, store, or other building only to learn seconds later (because that's how long it takes to react) that something just isn't right. New buildings (or recently renovated ones) frequently have residual construction dust that can exacerbate his symptoms. We often play "Goldilocks" in a restaurant to find a seat that's just right (not too near the outdoors, or near dusty plants, or near exposed brick, or, or, or...).This level of sensitivity to contamination is what has prevented him from finding a place to live, and why he's living in a hotel room. It's an invisible prison.

What you can't see is the incredible strength. For more than four years, this has been our reality. And for four years, my husband has kept hurting, kept going, kept fighting. Every day is like a chess match, anticipating what new challenge this disease is going to throw at us, what move we will have to make next to think ahead. And despite every setback, every devastating pivot, my husband has been nothing short of amazing. Check and mate, we will beat this thing because of his incredible strength.

You can't see all these things, these invisible, powerful, life-changing things, but they're there and they're part of who we are. A friend recently compared us to a duck, gliding on the surface but paddling like hell underneath. Yes, we're paddling like just can't see it. If you would like to learn more about we're going through or help us as we battle this monster, please visit our YouCaring website.

For more information about environmental illness, mold, and mycotoxin poisoning, read here, here, and here, and watch video here.

Wednesday, November 18, 2015

The C Word

Contamination. This is the center of our lives. When you are living with environmental illness and toxic mold poisoning, contamination's the thing. What does that mean exactly? Lots of things, actually. Mold spores are everywhere. And we all tolerate them. But for someone with mold toxicity, they're an invisible hazard. WH is extremely sensitive to any sort of mold in his environment. They cause strong reactions and set back his recovery signifcantly. Things like books and fabrics are the worst culprits, but anything -- even glass, plastics, metals -- can become contaminated.

It may sound silly, in fact, we've had doctors who have said as much, but little things can carry a big wallop. We recently got new credit cards. Credit cards. Innocuous enough. But devastating. We don't know why or how, but the cards were terribly contaminated (perhaps they were made in a mold-ridden facility, perhaps they were shipped in a moldy truck, it's mind boggling to speculate, so we try not to). Innocuous things that we aren't expecting can knock us to our feet.

A contamination is devastating to the environmental patient. Because of his severe sensitivity, for WH, it means his reaction is even stronger than usual. It means headaches, nosebleeds, shortness of breath, elevated blood pressure, chest pains, and more. It means that, because my clothes are now contaminated, we can't sit next to each other -- let alone hug or kiss. It means simple things now become complex. For example, instead of simply coming home and getting comfortable in front of the TV, one must "de-con." A shower with antifungal shampoo, careful bagging (in zipper bags to prevent contamination) of all clothes. It means living in a hotel, isolated from everyone and everything.

Shopping is a nightmare. In a time when most of our goods are imported, contamination is pretty much the norm. Clothes that are mass produced under unsafe conditions (mold, chemicals, dust, to say the least) in foreign countries are shipped here by boat (mold, mold, and more mold) and stored in warehouses (did I mention mold?). By the time they get to the store, they're often so contaminated that they're unwearable to the toxic mold patient. And it's not just clothes...paper towels, food items, anything that can absorb mold spores is at risk -- and so is the patient.

WH often calls himself a "truffle-sniffing pig for mold" because he can sense it within moments of exposure where others aren't aware of it at all. Avoidance is critical to recovery, but living in a humid city, surrounded by constant, common contaminants, often makes avoidance a challenge. And when there's a devastating, unforeseen event, avoidance means isolation -- from your home, from your family, from anyone who is contaminated at all. So much isolation.

This illness may not have a name, it may not be something you can see, but it is real and it is devastating.  If you would like to learn more about we're going through or help us as we battle this monster, please visit our YouCaring website.

For more information about environmental illness, mold, and mycotoxin poisoning, read here, here, and here. If you are inclined, you can watch the video below for more about contamination and how it happens. Both of WH's amazing doctors are featured in it.

Friday, November 6, 2015

I am 40.

Today I am 40. It's a milestone, to be sure. But it's one that's a little harder to face than previous ones (here's why). Rather than wallow or feel sorry for myself, I'm going to practice self care in the form of self love. A friend on Twitter yesterday (when I was still 39) suggested that I mark the end of my 30s by giving myself 39 compliments. I didn't quite get around to it, but I've decided to kick off 40 with 40 compliments for instead. Here goes:
  1. I'm tough. 
  2. I've got a great head of hair.
  3. Loyal, almost to a fault (but we're dealing in compliments here, not faults).
  4. I have low blood pressure  (which should not be underestimated as one ages).
  5. No wrinkles! (Also should not be underestimated)
  6. I will laugh with you and cry with you, because I really do care.
  7. I'm a pretty damn good writer. 
  8. I make a mean chili, burrito, and chicken soup (but not all in the same pot).
  9. My eyes (my best feature) are pretty.
  10. I work hard.
  11. I play harder.
  12. I love big.
  13. I will never forget your birthday. 
  14. I can bargain shop better than anyone (have I mentioned the $150 Manolos)?
  15. I'm smart.
  16. I'm a smart ass (a trait I value in others as much as in myself). 
  17. I'm great at planning things, especially parties.
  18. I have good taste (subjective, to be sure, but it's my compliment, so I say I do).
  19. I'm a connector...nothing is more fun than making sure great people know each other. 
  20. I can sew on a button (we're only halfway there, and this is getting hard).
  21. Getting hard? That's what she said! I can make a TWSS joke with the best of 'em.
  22. I have a great sense of humor (see above).
  23. I have soft hands.
  24. I'm up on current events. 
  25. I genuinely care about people and the world we live in.
  26. I'm a fast typist. 
  27. I can name all the Supreme Court Justices and every member of the Brady Bunch without Googling it.
  28. I'm pretty good with makeup (my own...sorry about your face).
  29. I know all the words to American Pie.
  30. I love giving gifts and will pick the perfect one just for you. 
  31. I am a champion napper.
  32. I'm a wonderful auntie to all my littles.
  33. I've got great manners. I always say please and thank you, and mean it.
  34. I'm good at putting things in perspective. 
  35. I've got faults, and I'm willing to acknowledge and accept what they are. 
  36. I will always try to see both sides of the story, even if I only agree with one of them.
  37. I'm a good swimmer (even though I hate the water).
  38. I can see the beauty in simple things.
  39. I'm the best friend I can be. I live for my friends. When I die, I want my tombstone to say, simply, "She was a good friend."
  40. I know who I am, and I love her. 
Compliment yourself. Whether you're 40 or 20 or 80 or anywhere in between. Don't wait for a milestone.

Friday, October 23, 2015

You Don't Know What Pain Is

When you're dealing with chronic illness, it's not always easy for others to understand the depth and breadth of what that means. I've been by WH's side for the duration of his illness, and even I only know a fraction of what he goes through on a regular basis.  This was solidified for me earlier this week when he gave me an example of how bad his pain is.

A few weeks ago, he had to have two teeth removed due to infection in his jaw likely related to the mold exposure. Last week he had to go to the dentist again, because even though the area was healing, his jaw bone had grown spurs (think icicles growing up from the bone and beginning to poke through the gums that had been recently operated on). It was extremely painful, and I cringed when he told me about it. The oral surgeon had to go into the area, snap off the offending bits of bone, and saw it down to smooth so that the problem wouldn't happen again. It sounds like hell, right?

Just about everyone out there can relate to dental pain. Who amongst us hasn't squirmed under a drill at some point? Each time WH would tell the story of his dental woes, our friends and family would wince and express how awful, how painful it must've been. After one of these wincings, WH said to me, "You know, everyone gets it when I say how painful my mouth is. Everyone can relate to that. But compared to the pain I've been in for the last four years, it's nothing."

Suddenly, I had a moment of clarity that I hadn't since we started going through all of this: I don't know what he's going through. I have no concept of how horrific this illness is and what a warrior he has been as he goes through it. I don't know what pain is. It reminded me of a scene from one of our favorite movies, Silence of the Lambs. The film is oft quoted amongst us, even at the most inappropriate times. In the scene, serial killer Buffalo Bill is trying to get his dog back from the woman he's kidnapped. She tells him that the dog has broken his leg and is in a lot of pain. At that point, Bill yells, "You don't know what pain is!"

This illness is unfathomable, even as I've witnessed it. We simply don't know what pain is. If you would like to learn more about we're going through or help us as we battle this monster, please visit our YouCaring website.

For more information about environmental illness, mold, and mycotoxin poisoning, read here, here, and here, and watch video here.

Friday, August 21, 2015

A Shoeulogy

Lest you think that this has all been about perspective and growth and strength, I feel the need to share with you one of the most devastating (and, frankly, shallow) aspects in our journey to health through loss. I reached a point several years ago where I was utterly pleased with my wardrobe. I had cultivated and curated pieces that I loved and could intermingle with each other to wear again and again. It made me feel good and it gave me confidence.

More than my wardrobe, though, was my shoe collection. I can only say, with a tear in my eye and not an ounce of irony, that my shoes were my babies. I had boots: suede, leather, snakeskin; red, black, brown, camel; high heel, low heel, mid heel; knee high, calf high, ankle booties. I had heels: patent, suede, fabric, leather; gold, black, brown, burgundy, red, nude; stiletto, wedge, chunky. I had sandals: strappy, flat, walking; leather, rope, cork, plastic. I even had a couple of pairs of sneakers and three or four pair of flats. Did I mention the boots?

Learning, as we did, that we would have to lose everything in order to gain health was hard enough to bear, but when it became clear that "everything" included my shoes, it was just too much. I would dissolve into a puddle just thinking about it. And with that, let me provide you with a eulogy for my shoes, a shoeulogy, if you will.

Goodbye, red snakeskin Manolo Blahniks. From the first moment I saw you on the rack in Filene's, I knew we were soulmates. From your $250 pricetag (which I talked the checkout lady down to $150) to your perfect stiletto heel to your absolutely uncomfortable leather sole, I loved you. You were with me at my rehearsal dinner, on a trip to Prague where I nearly broke your heel off (sorry about that...nobody told me there'd be cobblestones), and on days at work when I really needed to be sassy. You were the queen of my closet.

Goodbye, nude pumps. You served dutifully for several years, smartly blending in with browns, blues, oranges, and even, on one occasion, sequins. You were up to whatever task I chose to draft you into: a business lunch; a summer wedding; dinner out on a Saturday night; brunch with the Girls. You were the pearl necklace of shoes -- elegant and suitable for nearly every occasion.

Goodbye, black riding boots. From September through March, you were the go-to choice for comfort and ease. Whether it was a denim skirt or skinny cords, you knew just how to make any outfit look as if it had just emerged from a Town & Country Magazine shoot in the English countryside. Cheerio, old friend.

Goodbye, red satin peeptoes. You carried me down the aisle on my wedding day, and danced the best night of my life away with me. You gave me a blister on my little toe, but I forgave you for it. And even if you didn't get out much after that night, your place on my shelf was one of honor.

Goodbye, black leather high heel Prada booties. Like your cousin Manolos, we met in that aisle in Filene's, your name on the box issuing a siren call that could not be ignored. Though you probably didn't appreciate it, I told anyone who would listen that you only cost $150 (marked down from $795) because I knew your real worth. What I would give to stroke your Italian leather one last time . . .

Goodbye, Stuart Weiztman lanyard cork wedges. You were without a doubt the most comfortable, sky-high shoes I've ever owned. You went with everthing: jeans, dresses, slacks. I could put you on in the morning, walk a couple of miles, and keep wearing you into the evening. A dutiful and practical shoe, you gave me height and confidence and comfort. I'm glad you're now living with some girl in Australia who totally gets you.

Goodbye, J. Crew red snakeskin mid-calf almond toe heeled boots that were half a size too small, but fit if I wore stockings instead of socks and ignored that I couldn't feel my little toe. You were the best $35 bargain a gal could ask for. For more than 10 years, you marched yourself out when I really needed a kick (and had forgotten about that pesky little toe thing).

Goodbye, Aquatalia knee-high suede high heeled dress boots, I think I'll miss you most of all. I coveted, nay stalked, you online for three years before I finally made you mine. You went with everything, kept me warm, and felt like you were made from the skin of a newborn. I loved everything about you and would've slept wearing you if I could. You made my life better just being in it, and it's a little darker out there now that you're gone.

To all the other boots, flats, sneakers, heels, and sandals, you may not have been my favorites, but you served me well and loyally every step I took. May every step you take be one toward heaven.

For more information about environmental illness, mold, and mycotoxin poisoning, read here, here, and here, and watch video here.