Friday, October 29, 2010

Fire Friday- Tammy Jo's story

I am a wife and mother of three children. My son is 10, my daughter is 8 and our youngest girl is 2. We had been married nearly 10 years and bought home in 1999. My husband had changed it quite a bit and although I needed a new kitchen, I loved my home. We live in Massachusetts and my husband is co owner of a cabinet making business. We were having money troubles of course with the economy and I was trying to work and take care of the kids and school work and everything most moms do.

The night of our fire, I was folding laundry on the coffee table watching tv. We heated our home with a wood stove and had been using it for years. It was a very cold night and I even made sure to put enough wood so I wouldn't have to come down in the middle of the night to fill it again. I went to bed around 10 pm feeling confident that I had the lunches made and the laundry folded for the next day.

3:35 a.m. We hear the spoke detector beeping. It is a kind that speaks and says FIRE FIRE FIRE FIRE. We raced down stairs assuming it was the wood stove acting up. We soon discovered there was a lot of smoke in the house. Our kids were screaming and the baby was still upstairs. ( My husband build a 3 car garage with three bedrooms and a bathroom above it) My husband told me to grab the baby and he went to check to see where the smoke was coming from. (at that point, I really thought the wood stove just popped the top and smoke had escaped) As I got downstairs with the baby and the other kids near me, my husband said the smoke had filled our finished basement and we needed to get the kids in the van.

Without thinking, I grabbed the kids and put them in the car as I picked up my phone to call 911. We live in a community where there is no full time fire department. The firemen were sleeping in their beds so we had to wait for them to wake up, go to the station and get here!! We backed out of our driveway and parked down the street. My husband called his parents and while crying told them he thought our house was on fire!

We were all crying by now, watching the smoke pour out of the windows. The smoke was so thick and so black. We had our family dog in our car and she was lucky because she didn't know what was going on. We were watching our home pour smoke out each orifice and I didn't know what to think. The tears were streaming down my face and I had to try to keep a brave face for my son and daughter. My baby was just sitting in my lap. She was 5 months old at the time.

The fire department came and my husband went to the house to answer the questions they had about where our source of heat came from. By this time, my in laws drove across town to our street and got into our car and saw the five of us crying and scared. They saw my son who had already suffered from anxiety wonder what was going on. They saw my husband cry for the first time in his adult life. I suffer from Irritable bowel syndrome and I had to use my mother in law's boots to walk to my neighbors house with really bad stomach pains.

Some family members came to our car and took our kids to their home so they could get some rest and not further damage their little minds. They were after all, very young tired children who needed food, and clothing and rest.

We watched while they were slipping and sliding down the street because it was so cold outside and the water froze on the street. Our neighbor told us to get our of our car and into their home. It was at our neighbors house where we learned that everything was gone. The structure was still in tact, but all our possessions inside were destroyed. The fire started form our chimney. The person who built it did not put enough mortar between the bricks and the wood of the house. Through use and time, it was inevitable. It was not our fault, and there was no way to inspect it, repair it or predict it. We were just lucky that the smoke detectors worked.

The fire chief came to the neighbors house and took us in and let us see our home...
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These pictures were taken of the first things we saw when we entered the front door. We could recognize everything, yet see nothing...This truly changed us. It changed who we are as people and has changed how our children live and react to life.

We lived in a trailer on our property for just six months, but it felt like six years. We were cramped and uncomfortable, but alive and together. We had some amazing support from family, friends, and community. We received many donations and so much emotional support.

We were forced to knock down the main part of the house and rebuild from the foundation. The garage with the bedrooms above had to be gutted out and built up again. We moved into our new home in July of 09' thanks to my husband's business and a great insurance company.
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This is our new home.
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This is one of the first things seen when coming in the front door now...

My two children and myself have been seeing a counselor since the fire and I often stay awake as long as possible to make sure we are all safe. Just tonight, one year and a half later, my son is nervous about a heater we put upstairs to keep us warm. I know we are safe. I just don't know when my body will feel safe again...
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This picture was taken May 2010. My husband Scott, baby Erica, Myself Tammy Jo, our son Matthew, and our big daughter Laura.
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Thanks for sharing Tammy Jo. I'm wishing you peace as you continue to heal from the pain of your fire.

Do you have a story to share? Email me at life_after_the_fire@yahoo.com.

Tuesday, October 26, 2010

Walking in my shoes

"You never really understand a person until you consider things from his point of view - until you climb into his skin and walk around in it."
-Atticus Finch, To Kill a Mockingbird

Last night, I was sitting in my oversized Pottery Barn chair in my living room, dizzy as I always am, checking my email when a comment came in for moderation on my Happy Anniversary post about accepting that life sometimes is "For Worse." It's hard to know the intent of a blog commenter, but it really made me defensive and has continued to bother me almost twenty four (dizzy) hours later.

Kathy, I do not know what your intent was, but I will say that you have not climbed in my skin and walked around in it to be able to criticize my feelings. I share with the world, or at very least those who read my blog, my feelings. You might not agree, and you are certainly able to express your disagreement, but ultimately these are my feelings.

Certainly I can agree with you that I am fortunate to live in a country where I have freedoms and (at the moment) health insurance. I have access to doctors (though not many who believe in chronic lyme disease). And I have a house that I am learning to love. I do not live on the streets. I do not have to beg for food. But does that mean that I am not entitled to say that my current condition sucks? Am I not able to look at the fact that my home burned down the day after I finished folding my son's newborn clothes and wish for it to be otherwise? Can I not wish for health and be even a little sad that I am sick? Your comment seemed to imply that because I am "privileged" (spelled with an "i" in case you were wondering), I cannot have unfortunate life circumstances. And that just isn't true.

Until you have walked a day in my shoes, stood in the nonexistent transom of a burned down home while waiting for your son's birth, until you've had your face come to a halt and no longer smile or blink, until you have watched your son learn how to smile when you could not, until you've had a PICC line placed and been happy about the fact that you were actually being treated, you cannot possibly know how unlucky I feel some days. I believe that I have walked this road with strength and grace. I've learned through the last two years that it's impossible to know how mightily an event might have impacted a person, and to always ALWAYS start with compassion. I invite you to do the same.

Wednesday, October 20, 2010

Fall

I love fall. I know I've said this before. And I'll keep saying it.

I love the crispness of the air. I love that I can wear long-sleeved shirts that cover up my PICC line. I especially love the fact that this year I can love the cold weather AND eat ripe tomatoes because of the weird spring we had. I love the pumpkins. I love the lattes. And I love the anticipation for Christmas (speaking of which, have you picked up a copy of Chicken Soup for the Soul: Christmas Magic? My story is on p. 132!).

Kellen is finally old enough to understand the concept of a pumpkin patch. We went to Farmstead this year where we rode ponies and watched pigs race and jumped on a big air trap and rode a tractor.








When we stopped to pick pumpkins, Kellen melted down because he didn't want to say goodbye to the tractor, even though we were getting right back on.





We went again today with some friends, and Kellen got to ride in a metal cow behind a tractor.







He was sad when it wasn't his turn.



And he played in corn. I didn't have such a good time, as I leaned up against a fence that was improperly secured, and I fell backwards with my feet over my head. My tail bone is royally sore this afternoon.



The other thing I love about fall is the delicious apples. I remember my freshman year of college taking an environmental studies seminar and having the local farmer bring in apples from his orchard for us to taste the varieties. I fell in love with the diversity of the apple, and while I love to eat Fujis and Galas the most, I appreciate others for different uses.

Fall also brings some sadness though, as it was a year ago that my grandmother suffered the stroke that would ultimately end her life. My grandmother's applesauce was legendary, and last Thanksgiving was the first family holiday I can remember where it didn't appear on the table next to the turkey.

Thankfully my grandmother's apple trees are still in the hands of family, and we were able to pick some apples for ourselves this year in hopes of canning apples for applesauce so that her legacy lives on. Kellen thought apple picking was great, and I am sad that it isn't an experience we got to share with my grandmother. I also hope I don't suck at canning!



I might not feel great, but it's still fall. And I'm happy for that!

Thursday, October 7, 2010

Sometimes "I do" really does mean "for worse"

Today is our four year wedding anniversary. Amazing to think it's only been four years.

Photo by Brad Hollenbaugh

** While Dan and I didn't recite the traditional vows, I'm going to reference them for this post.

It's hard for me to look at that picture, even though it hangs on my stairway, and I see it every day (just as I did when a copy hung in the living room of our old house). I look at that girl, and I'm jealous. She's happy. Life seems so full of promise. The idea that she could need someone to stick by her in sickness and through "worse" is foreign to her even though she'd already endured some of life's challenges. She was twenty four. Getting married "for better or FOR WORSE" was just something that people said. They didn't really have to endure it.

But we have.

Three years ago we went to Tahoe for our first anniversary.

Even that trip seems happy and full of promise. And yet on our anniversary, we spent the day wandering around Tahoe looking for a place to draw my CD3 fertility bloodwork. On our anniversary, I started Clomid to help us get pregnant. It didn't work.

Two years ago, we sat on the foundation of our new house feeling homeless and without the things that had been a part of our newlywed journey. The toasting flutes from our wedding were ash. The champagne from our honeymoon that we were saving for our son's birth or Dan's graduation, evaporated. My wedding dress. Our whole life was gone.

Photo by Bonnie Creevy

Last year I had just learned that I likely had Lyme Disease, and we were traveling to Seattle, where we spent one of the rainiest weekends of my life holed up in a hotel room with a child who wanted none of it.

And this year, I spend the day in bed, crawling out of my hell to go to dinner. I want to blow out my hair so that I at least look presentable, but that takes energy, energy I'm not sure I have.

Dan and I have been married four years, and our lives have been tried beyond what seems fair or reasonable. I didn't enter into this marriage thinking that I was going to put my husband through "worse." I wanted to make his life better. Instead, I feel like I've drug him through hell (with me).

I think all you can do is hope. Hope that one day we get to experience highs in our marriage and in our life that make up for the lows that we've had to endure.

Sometimes saying "I do" really does mean getting through the worst of times together. Even if all you ever wanted was "for better."

Tuesday, October 5, 2010

Chronic Disease choices

My new website has been put on a semi hold while I figure out some coding stuff. It would be great if I could do that while I'm flat on my back in bed, but reading is a challenge, not to mention comprehension. If you've known me since I was a kid, you can only imagine how difficult that is for me to deal with.

This brings me to a larger point about choices we have to make when we're sick. I remember hearing a few years ago someone talk about the reality that when we say "yes" to one thing, we say "no" to another. That isn't any truer than when you are sick.

Some of the choices I have to make each day:

- Whether to go to bed early or read to my son at night. I have a portable IV pump, which was supposed to make this a moot point, but after the night when I had a line full (yes full) of air, I decided the best thing was to stay still during my infusion. We put Kellen to bed, and then I start my meds, which means I finish after 10.

- Coffee or extreme fatigue. Kellen gets up between 6 and 7 every morning. Since I don't finish infusing until after 10, I often am awake until close to 11. I'm lucky if I get eight hours of sleep. Dan goes to school, and then I have Kellen. He's taking swimming lessons, so my only real option if I'm going to survive the morning is some form of caffeine. I have stomach problems so this only complicates those. It also means that I likely won't take an afternoon nap, even though I should.

- Pain or well, pain. Speaking of stomach problems, I get to choose between the types of pain I get to experience each day. I have chest wall inflammation (pleurisy in medical speak). I went to the ER several times for chest pain before I learned what was wrong. Advil pretty much reduces the inflammation so that I'm no longer in pain (at least that way). But if I take Advil, I risk stomach pain and causing further damage to my GI tract.

- Sugar or no. Because of the systemic overload of bacteria, a lot of lyme patients have trouble with things like yeast overgrowth, and as a result are encouraged to eat a low carb diet. The problem for me is that not eating sugar has led to hypoglycemia, which causes dizziness. I'm already dizzy enough, TYVM. I am currently on the "fuck-it-diet."

- Pixar or Bravo. I would just like to thank Pixar for creating such brilliant kids movies. They are actually quite enjoyable for adults. As much as it saddens me that Kellen watches so much TV, some days that's how we survive. We have already decided that Kellen will be getting more DVDs for Christmas because I know nearly every word to Cars. I'd love to find Lion King (though I think it's in the "vault"). We're also looking at Ratatoille and Aristocats. I'd love other suggestions. I used to have a great disney collection, but they are no longer in existence! (The movies we do have are Cars, Up, Nemo, Shrek (all 3), Toy Story, A Bug's Life, Tarzan, Happy Feet.)

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On another note, several blogging friends have asked what they can do to help. I've been thinking about that, and I think the greatest thing would be cards. There is something about opening the mail to find a personal card that brings a smile to my face. It reminds us we are thought of. I used to have a large collection of cards, which burned up in the fire. I've been trying to decide if I should post my address or get a P.O. Box. Our address has been so publicized that I don't know if publishing it again would matter much. But I'm also a little nervous about doing so. More details this week. Thank you all for caring. The support I've gotten in the last couple of days has been overwhelming. Thank you.

Monday, October 4, 2010

It's not enough to just be alive

I apologize if the title is shocking.

I've been reading this morning more tales of Lyme and re-watched the trailer to Under Our Skin (which used to be available online but apparently isn't anymore).

Someone said it isn't enough to be alive. Oh how that resonated with me this week. There was a time where simply being alive was enough. I could appreciate the pleasantness of life just simply by being.

That's not enough.

Just being is too painful. My body hurts, my head spins, I feel exhausted both physically and mentally. Living for the sake of living is not enough for me. I have to find other reasons to live.

I was talking recently to another Lyme survivor on Twitter about good and bad days. She said something about counting the moments not the days or the weeks. That phrase has changed my life. I certainly am not yet able to count good months. I am barely able to count good weeks. I can sometimes count good days. But I can always count good moments. I am so used to quantifying my life more globally, so each day was good or bad. And when I strung bad days together one after the next, my life seemed pretty gloomy. Let's be real, it is pretty sad.

But no matter how bad my day is there is ALWAYS a good moment that interrupts the bad.

It might be Kellen giggling with me when we are singing on the couch. Or lying in bed with him asking to read the "Be Butt" book (belly button). There is joy in picking the ripened tomatoes off the vine or walking out to the mailbox to find an unexpected card.

This illness has made me painfully aware of how those moments can save us from our pain, our suffering. It's no longer enough for me to just be alive. I have to live in those moments, stringing one second of joy to another in hopes that I will create a necklace of days that turn into weeks and eventually into months.

Sunday, October 3, 2010

Letter to friends and family: Lyme disease

Has it really been over two weeks since my last post? Time just seems to melt, one day into the next into the next. Several of my symptoms have returned, and it was all I could do to hold it together for Kellen's birthday party. I'm now recovering from that day even though it's over a week later.

Last night I came across a post from Infectiously Optimistic with a letter to friends and family explaining her Lyme disease and the struggle she endures day after day (please read this if anyone you know suffers with chronic illness. It's really beneficial). I have been struggling lately with how to ask for help from those closest to me. As someone who finds care giving natural, I have a hard time with needing to directly ask for the support I need. I feel like I shouldn't have to explain how to care. But I'm learning that those expectations only breed resentment if I'm not clearer about my needs.

I'm borrowing some of the language from that post in crafting my own letter:

Dear Family and Friends:
I have late stage Lyme Disease.

"Late Stage Lyme Disease is a neurological disease, much like Multiple Sclerosis, Parkinsons, and ALS are. When a person is initially infected with the bacteria, the disease is not neurological in nature and is easily treated with a course of antibiotics, but if the infection goes unnoticed and is left untreated, the bacteria continues to replicate and spread throughout the body. The systemic bacteria is able to morph itself into a resistant form that can hide itself in places in the body that the immune system cannot easily penetrate, like the joints, eyes, and the brain. The patient then becomes a Late Stage Lyme Disease patient.

"I know that this information is controversial, and if you do a google search on it, you are likely to come up with conflicting information. The disease itself devastates a Lyme patient's life, but the controversy surrounding the disease makes it that much harder. Understandably, it breeds doubt amongst other doctors, friends, and family members of a patient. I like to explain it this way though:

"The way Lyme Disease is currently being handled is much like the way AIDS was handled when the AIDS epidemic first arose. Patients who were infected with HIV were doubted, because the infection was so rare, understudied, and controversial. The patients were denied treatment and made to feel as though they were crazy, and that it was all in their head, despite their obvious illness and failing bodies. One of the leading Lyme doctors on the East Coast was actually initially an HIV doctor, and diagnosed one of the first cases of AIDS in North Carolina. He stuck loyal to his HIV patients despite the controversy surrounding the disease. He now primarily treats Late Stage Lyme Patients. It is reported that unfortunately, Lyme Disease is shaping up to look like an even greater epidemic than AIDS. This doctor asserts though, that compared to the research that was being done on HIV in the beginning of the AIDS epidemic, Lyme Disease research right now is alarmingly elementary and rather non-existent.

"I'm sure that controversy exists in the early stages of any new disease or epidemic, because typically the initial reaction to something that we don't understand is to either fear it and avoid it, or ridicule it. Unfortunately though, as this happens, lives are coming to a screeching halt, much like mine has.

"When Lyme Disease moves from it's early stages to its late stages, the symptom list grows exponentially. Initially, a patient may have 2, 3, maybe 4 symptoms that are easily ignored. By the late stage of the disease, the official symptom list expands to over 57 symptoms. This may seem nearly impossible and like an exaggeration, but think of it this way: the brain is the control center for the entire body. If there's an issue in the brain, then virtually anything in the body can go wrong, because the brain is the commander of every organ, cell and function in the body.
"

I do not know when I was bitten by a tick, whether it was the bite in Virginia when I was ten or whether it was a bite when I was pregnant. I've struggled with bizarre medical issues since I was young and have had bouts of extreme fatigue that were inexplicable. But those episodes seemed to be controllable.

After having Kellen, my face went paralyzed, Bell's Palsy, seemingly benign. If I had known then that I had Lyme disease, I could have been treated with antibiotics and hopefully gotten better quickly. Instead, I was prescribed steroids, which is actually devastating to a Lyme patient as it provides an environment ripe for bacteria replication. Because of the fire, my diagnosis was even further delayed because it was easy to assume my symptoms were a stress response or related to my PTSD. Each day from November 2008-September 2009 I continued to get sicker and sicker as the bacteria ravaged my body, most notably my nervous system with profound dizziness, light sensitivity, peripheral neuropathy, shooting electric shock pains down my arms, migrating joint pain, muscle pain, and fatigue merely from waking up. In that time, I probably had thirty healthy days.

Lyme patients are often written off as head cases, merely imagining their symptoms. Why anyone would imagine this hell is beyond my scope of comprehension, and if you knew how badly I felt on a day to day basis, you would never accuse me of hypochondriasis or pretending to be sick for attention. By questioning my diagnosis, you create even further isolation when chronic illness is isolating enough.

Despite the pain in my body, I have continued to try to live something resembling a life. I know to some of you it seems that I am wallowing in self-pity, eager to share my pains with anyone who will listen. You don't see the strength it takes for me to get out of bed and take care of my son. There are days where my only goal is to be able to cook dinner. I endure great pain to live half the life that I imagined I would live at 28. When Kellen goes to the Little Gym, I experience increased dizziness because I'm so sensitive to light and noise. But it's important to me that he not sacrifice because of my illness. We have people over for football games because we enjoy it, and yet the energy I expend cleaning my house and cooking takes me several days to recover from, nevermind the dizziness that comes along with the noise. I can no longer do so many of the things I love (like reading and scrapbooking), so any activity feels like I've crossed the finish line of a marathon.

I know there are many of you who feel that we are neglecting you. My entire day is focused on surviving to the next day, and I'm sorry if I have hurt you or otherwise not been engaged in your life. It is not because I do not care (and I need to remember that just because I haven't from you that it is not because you do not care). As the other blogger noted: "A lot of the time though, when you're chronically sick, you're "out of sight, out of mind" because the nature of normal everyday life tends to swallow up those around you." And because of my illness, I am no longer engaged in normal everyday life with you.

There are also family members who don't understand why we don't make the effort to come over (more). They don't realize that there are days where simply getting out of bed requires incredible effort. I have to give myself an IV infusion everyday for two hours. I have to take my medicine out of the fridge one to two hours before my meds start. While you might not mind my infusing at your house, it feels like a hassle to bring my supplies with me, not to mention the inevitable reality that I will need to drive home connected to my IV. Additionally, if we are at your house, I have to spend more time corralling my son and making sure he doesn't break something or hurt himself. Ultimately it's just so much additional effort for me to go anywhere that we just stay home. On my good days (and hopefully weeks), I'm trying to make up for two years worth of projects. The reality is that I still have yet to fully move in to our house because I've been sick for so long. As I've said many times, we are more than happy to have you over as long as you don't mind the clutter that seems to overtake my house.

The doctor of that blogger said that this disease takes a village to overcome, both in terms of medical professionals and support. She says, "I also believe that at the end of the day, if the patient doesn't have their own village of supportive, accepting, educated family and friends to come home to, the puzzle is incomplete. You just can't do this alone." I know that I cannot beat this alone, both mentally and physically. I know that learning to ask for help is only one small part of my long journey in this life, and I am continually reminded that I need to seek out the support I need. I need you as a part of my village if I am going to come out of this on the other side.

Things you can do to support me:

- Educate yourself about Lyme disease. This is a very controversial disease, but I trust my doctor. No one would question me if the doctor said I had cancer. Please don't question this either. The doctors and patients are, in a way, unlucky to be at the forefront of this disease (possibly a major epidemic) because there is just so much that is unknown and treatment often feels like an arrow flying through the air in a dark room just hoping to land on the target... and if you're especially lucky the bullseye. The documentary Under Our Skin is a great start as is the book Cure Unknown.

- Don't assume that because I've had good weeks that this week is a good one. The worst weeks I've had have followed some of the best weeks because it's so mentally draining to have a bad day after so many good ones.

- Reach out. Chronic illness is, as I said, very isolating. The loneliness only enhances the depression that comes along with this disease. While I may not have the energy to go out to lunch or even get coffee, I need friends, whether you call or come over and hang out for a bit.

- Leave out the puppies and rainbows stuff. Positive thinking is great, but my sharing with you how badly I feel isn't negative thinking. It's just my sharing my struggle with you because I am trying so hard to get you to understand the pain I'm living with so that you don't think my laying on the couch is laziness or made up. I don't need you to tell me to think happy thoughts. If you do, I promise to annoy the heck out of you one day with the same rainbow up the ass crap, and I don't think you'll like it!

- Dinners. Evenings are especially hard for me, so having some frozen meals would be helpful.

- Other household help. Simply doing laundry takes an enormous amount of energy, much less weeding as my meds cause sun sensitivity. Any help is always appreciated.

- Patience. I do believe that I will get through this and get to experience health again. In the meantime, please be patient. If I'm short with you, I don't mean to be. I just don't feel well. If I cancel plans, please know it's not personal. If I don't call for months, I promise I still care.

This journey is hard. But I know I can't do it alone. I need you.

Be well.
Brooke