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Stop Pushing Me

by | Jun 29, 2016 | Anger, Chronic Illness, How To Help A Friend With Chronic Illness, Invisible Illness, Loneliness, Lupus, Shame, Trauma | 4 comments

I push myself everyday often beyond my better judgment.  Lupus and Sjogrens are not diseases that I can beat into submission nor is the depression that comes along with the chronic widespread pain.

Yes, I want to do more, but why can’t you see I can only do so much and some days a lot less?

You need to know something else. When you don’t make the time to visit me?  it breaks my spirit in ways I cannot adequately describe.  I  may be broken, but I still have value. I am worth the trouble it would take to make the trip to my house.  I know you love me.

I wish you knew how much I need you to recognize this won’t go away by ignoring it and by default me.

complicated

by | Sep 24, 2015 | Cancer and Neoplasia, Chronic Illness, Coping With Cancer, Family, How To Help A Friend With Chronic Illness, Pain And Pain Disorders | 0 comments

we were supposed to close on our house today.  that’s been pushed to friday now.  the entire first floor had to be restained and refinished.

tomorrow was supposed to be my final chemotherapy session.  now i have no idea what the end of my treatment looks like.  maybe two more cycles.  maybe imrt.

i’m on prednisone indefinitely to combat the bleomycin toxicity damage. yesterday, my pulmonologist added bactrim three times a week to fight off any atypical pneumonias that steroid users are susceptible to.

the steroids have also swollen me to the size of a freshly cracked tube of cinnamon rolls.  poppin’ fresh would be proud.  none of my clothes fit.  i’m not trying to be all, “oh, woe is me, i’m so fat,” i’m just sayin’… i can’t open the closet and just get dressed anymore.)  it really makes for a bad start to the day.  and spending money on fat clothes is really not something i’m amped up for.

my feet are blistered and peeling.  my fingernails are falling off.  my teeth are getting really sensitive.  my joints hurt.  i’m tired all the time.  i’m overly emotional and can be generally unpleasant far too much of the time.  half of my hair is growing back, but it looks muppety and i plan to shave it off.  i am so beautiful.

nugget has a cold.  she’s been seen three times for it (mostly for my benefit) and is really just fine, but it makes me sad to see her sick, especially when there’s little i can do to comfort her. at least she’s learning to cover her mouth when she coughs.

we drove up to northern virginia yesterday for a bunch of doctor appointments.  the plan was for nugget and me to go back to my parents’ last night, but i couldn’t make the drive.  so, we’ll try again this afternoon. wish us luck!

hopefully all will go smoothly at closing on friday and slowly but surely we’ll start making our way into our new home.  i know my treatment will be sorted out eventually, but it’s difficult to see the supposed, and most anticipated, end come and go.

i know, life’s like this.

All That You Can’t Leave Behind

by | Sep 24, 2015 | Anger, Birth Defects, Chronic Illness, Compassion, Encephalocele, Faith, Family, Fear, Feelings, Guilt, Hope, How To Help A Friend With Chronic Illness, Loneliness, Love, Medical Mystery Tour, Neural Tube Defects, Neurological, Nerve, and Spine Disorders, NICU, Stress, Trauma | 0 comments

It’s a nice enough looking building, all official and comforting, with people buzzing in and out in their neatly pressed scrubs, looking like they know precisely what they’re doing and where they’re going. In the hallway there, there’s a heart statue, or maybe it’s a statue of kids in a ring, perhaps playing a game of “Ring Around The Rosy.”

The desk is always manned by a sweet-faced volunteer to help you find whatever you’ve lost or find your way, except when, of course, you cannot find it at all. There are flowers there, too, beautiful flowers, always fresh flowers. Usually lilies are mixed in, fragrant lilies, reeking of death and funerals, but the flowers are so beautiful that you can almost forgive the scent that makes you want to vomit.

Over there is the place you cried until you dry-heaved as you took your infant daughter to her third MRI in her first week of life. And just past that is the chapel where you prayed for her life. The stained-glass windows during that frigid February day shone a cold bright light as your daughter slumbered through an anesthesia coma, and you tried to forget all that you knew about neurosurgery.

You prayed with all of your soul.

Above the chapel is the waiting room where you sat after you’d dropped your daughter off into the arms of her neurosurgeon, hoping that the last kiss you gave her warm, delicious head, wouldn’t be the last kiss you ever gave her. You sat in that waiting room with the three people who cared enough about you to show up and hold your hand and you choked back tears as the operating room nurse brought you back a bag of your daughter’s first hair in a bio-hazard bag.

You held that bag and wondered if that would be all you had left of her.

Below that waiting room is the gift shop where you dragged Nathan, someone who you will always treasure for being a friend when you needed one most, to buy your daughter something hopeful. A necklace. Carefully, you pick out a necklace that you will give your daughter and someday tell her, “Amelia, Princess of the Bells, Mommy bought you this when you were having your brain surgery.”

It’s a very beautiful necklace. A crystal encrusted heart on a simple silver chain in a velvet bag. It is perfect.

You hope she knows that this necklace is very, very important.

Two floors and a yawning corridor away, is the happy floor, filled with women and new babies, where your life was forever changed with seven words, “Becky, there’s something wrong with your baby.” A new world was created then, a secret place only you could go, this land of tears.

Your soul broke.

Up above that room, down another winding corridor, you screamed as they wrenched your nursing baby from you. Your breasts wept, too, as you cowered in that bed, terrified, in your secret place, your own land of tears.

In the dark basement, worlds away from the happy new parents above, you joined the ranks of the hollow-eyed ghosts in the NICU as you signed in and out to see your daughter. There, at least, you didn’t scare anyone with your eyes swollen nearly shut from crying and cheeks raw and bleeding from hospital grade tissues.

Above her bed there would be her bed post-surgery in the PICU and seeing her in a gown that bore the same logo as the hospital you’d worked at in nursing school made it almost easy to pretend this was all some vicious nightmare. That maybe you’d wake up to a normal, healthy baby.

Then your daughter would cry, her voice raw and hoarse from intubation and you knew this was your new world order.

When your other children came to see their sister, you’d rearrange your horrible face into a mask of what you hoped would pass as cheerfulness, ply them with candy, and hope that they wouldn’t look too closely at your shaking hands or tear-stained face. When they screamed, “I want MOMMY!” as they left for the day, you felt torn between the two worlds, one of which you’d just as soon leave behind, too.

All corridors eventually feed into the cafeteria, where you remember laughing for the first time in months. It was a jangled, strangled sort of sound, but there it was: a laugh, from your mouth, and it was real.

Down by the statue of the heart or perhaps children dancing in a circle is where you waited with your daughter as you took her home with you for the last time. Surrounded by all of the pink things you could find, balloons deflating slightly in the cold February air, you were exhausted, but ebullient: your warrior daughter had made it.

A mother had never been prouder. You held her car seat close to you as you whispered to her sleeping cheek, “You made it, my girl. You’re a fighter like your Momma, all right.” This time, for the first time in her life, when the tears wet her cheek, they were the good kind.

But late at night, when the rest of the house sleeps, these are the corridors that your mind roams, over and over. Your memory, photographic, can recall everything with the sort of clarity that makes you relive those days constantly.

You are forever delivering that sick baby.

Constantly having her wrenched from your arms, always back in those terrible moments roaming the halls, seeing the same desk clerk, smelling those awful lilies, dry heaving into the diaper bag.

The sadness is omnipresent and yet nowhere. It is the new world order.

Save for roaming the corridors all night every night, you haven’t been back to those halls since your daughter had those awful thick black stitches removed from the back of her head.

You must return. New problems, a new specialist, means one thing: you must face your demons and return.

A new desk clerk and a new flower arrangement await you in the official looking building in which you found absolutely no comfort and now you must face up to walking these halls once again. It’s likely that you’ll cry. It’s likely that you’ll dry heave. It’s likely that no one will understand your reaction to this big official building. It’s just a place, after all.

But this is so much more than a place. It’s where the old you shriveled up and died and the new you was dragged screaming into the world.

So you and your ghosts walk the corridors all night every night, reliving the worst parts of your life, wishing they could be laid to rest, knowing that they never will.

Ever.

—————

This post was written by Becky Sherrick Harks and originally published here, on Mommy Wants Vodka.

Poison Extraction AKA Leukemia Part II

by | Sep 15, 2015 | Blended Families, Cancer and Neoplasia, Caregiver, Chronic Illness, Coping With Cancer, Grief, Help For Grief And Grieving, How To Help A Friend With Chronic Illness, Loss, Parent Loss | 4 comments

Part I Here

My memories of the time between when Mom was admitted and when she left for Houston are jumbled. I know with Mom gone, running the house largely fell to me. I would get me (age 8), my sister (age 3-4) and my Dad up in the mornings and make breakfast. I remember having burns on my thighs from wearing my night shirt while cooking bacon in the morning and the grease would pop and splatter me. I remember learning how to do laundry and having to have a step stool so I could climb on top of the washing machine so that I could reach the soap. I remember sitting on the sofa attempting to hand-sew a hole in my underwear closed.

Through out the summer we spent a lot of time with various family members and random people from our church who volunteered to look after my sister and I for a day. That was probably the hardest. Every house had different rules. One house I sat until I was near starved b/c I’d been taught it wasn’t polite to ask people for food. When the woman found out she was like “oh honey you just have to speak up or better yet go serve yourself!” Then the next house I got in trouble for trying to do just that. Some houses they’d tell me I could eat anything I wanted and others I was told that beggars can’t be choosers and I should eat ONLY what they offered me and eat every last bit.

Then there was the boredom. Some people had kids who would share their toys. Others did not – either the kids were grown or the kids wouldn’t share. Or they’d want to watch a movie I wasn’t interested in or what not. The sweetest woman, I have no idea what her name was or I’d write her a big fat thank you note all these years later, discovered I liked to draw and she bought me a BIG thick fat loony tunes coloring book and a box of 64 crayons. I swear that book saved my life with all those days of house hopping.

I also discovered reading. But mostly I discovered how to fake reading…. Nobody would tell me exactly what was up with my Mom. They made this big show of how Momma would do 6 weeks of chemo therapy (counted it off on the calendar with us and everything) and then she’d be all better and could come home. That was a lie. I don’t know if it was intentional or just misinformed but either way when the info changed they didn’t tell me directly.

And so I’d pretend to read a book and listen while Daddy talked on the phone. I even remember him saying “Oh nah, its okay, she’s reading a book. She’s not listening” and he would talk about chemotherapy and radiation and bone marrow transplants. I didn’t understand what those words were exactly but I caught the gist of it. Daddy seemed to underestimate my vocabulary and comprehension back then. Where as my Mom always just talked to me like I was an adult and I’d just have to stop her occasionally to have her define things.

It was funny, at one point they put me in class with one other little boy and some type of teacher there at the hospital where she tried to give us the “My Mommy has Cancer” after school special or some such thing. I was so excited to finally have a person to ask all my questions to. I immediately started asking about chemo etc and she about freaked. I think she would have put her hands over the ears of the other kid if she could.

As it was class was HASTILY broken up – me with one teacher where I asked all my questions and the little boy went with some other person to get the kiddie version.

Our days went something like this: we’d get dropped of with whoever was watching us that day, Dad would go to work, then he’d come and pick us up, we’d go visit Mom in the hospital. My sister and I would wear masks b/c the docs explained that we had cooties and would make Momma sick (oddly enough she never once got sick from my sister and I but she caught a dozen things from Dad). And then later in the evening we’d head back home and I’d lay across the foot of my Dad’s bed pretending to read Black Beauty while he talked on the phone.

In retrospect, Momma mostly looked good at the time. I remember she lost some weight and when the chemo got started a friend of hers who was a beautician came the hospital and gave her a hair cut. My Mom had had the 80′s big curly shoulder length hair and her friend cut it off to a ultra short pixie cut. They explained that this was better since the chemo would probably make her hair fall out and it wouldn’t make such a mess this way. I remember being shocked but liking it.

I missed being able to give my Momma kisses but at least we could scramble up into her bed and cuddle with her and get hugs. We’d bring her pictures we’d drawn to decorate her hospital room. And we always loved to see when other people would bring her balloons. She couldn’t have flowers so if somebody forgot and sent her them they’d hold them out at the nurses station and we’d take them home with us at the end of the night. I liked that part because I loved fresh flowers but I sure wished I could share them with Mommy.

Then they began to talk in earnest of transplants. Momma needed a donor and a hospital. At the time there were only 3 hospitals in the country that did the transplant – one in Tucson, one in Seattle and one in Houston. At the time we lived in Phoenix and so Daddy asked the doctor, “Well, Tucson is closest… whats the difference between the them?” The doctor replied that, “Well, right now, Tucson has about a 13% success rate, Seattle is running 20% and Houston is doing 50%”. My Dad stared at him for a minute and went “Ya know Houston sounds GREAT to me.”

I remember the search for a donor. They started by testing all of my Mom’s brothers. Adam and Sam went first and neither was a match. They’d wanted to avoid putting Uncle Mike through the stress because he had a heart condition, but he agreed to be tested. By this point, I’d caught on that if Mommy didn’t have a bone marrow transplant that it was going to be bad. I wanted them to test me. I didn’t care if it hurt. I was willing to do anything to save my Mommy.

Momma was dead set against my even being tested. She said it hurt too much and she didn’t want me to go through that. I was set and ready to be stubborn and fight long and hard for this if I had to but thankfully it turned out my Uncle Mike was a match.

So now we had a donor and a hospital there was just one more major roadblock: money. The insurance company was refusing to pay for treatment. There was some sort of government assistance available but they didn’t want to pay either and MD Anderson wouldn’t let us come unless they got a down payment that was either 30k or 3k I don’t remember. I was 8 at the time but I remember it was wayyyy more money than we had. My parents had always been on the verge of broke though they worked hard to provide for us but the medical bills quickly piled up and wiped out whatever was left of their finances.

And so, I don’t know who all organized it but they had a big benefit dinner to try to raise money for my Mom. A local grocery store donated steaks, family friends provided entertainment, and Kodak (my Dad was a professional photographer at the time) donated door prizes. I know the tickets were like 100 bucks each. We raised a ton of money with that dinner (I can’t remember exactly how much) but it was still far short (less than half if I recall) of what we needed.

Unbeknownst to me at the time, my father’s childhood best friend, an attorney, sent a letter to the hospital and the government and explained that if they continued to delay my mother’s treatment while they quibbled over the money and she died that we would sue them for everything that the mother of two small children was worth.

The day after the benefit dinner, we got word from the hospital that they’d let us come after all. We only needed to pay less than half the previous amount in advance. I don’t remember the numbers but I remember it was almost the exact amount we’d raised at the dinner the night before. It was a miracle.

A small army of sisters from church came to the house and packed up everything. My sister and I went to live with my grandparents while Mom and Dad went to Houston.

The day they left we went to the hospital early. Mom was in street clothes for the first time in months. They wheeled her in a wheel chair out of the hospital and to a waiting limo. I was so excited, I’d never been in a limo before. Daddy explained that taxis had too many cooties and they wanted all of us to be able to ride together so they’d gotten a limo. I remember my Mom and Dad piling into a little leer jet complete with a small medical team to monitor Mom through out the trip.

I hugged my Mother goodbye for what I was scared might be the last time. I had know idea if I would ever see her again. And then I stood next to my Grandma with her arms wrapped around me and I sobbed my little heart out as I watched the plane back up and take off.

Part III Here

My Lyme Disease Story Part II

by | Sep 13, 2015 | Anxiety, Bacterial Infectious Diseases, Caregiver, Chronic Illness, Fear, Grief, Help For Grief And Grieving, How To Cope With A Suicide, How To Help A Friend With Chronic Illness, Infectious Diseases, Invisible Illness, Lyme Disease, Stress, Suicide, Trauma | 3 comments

Click here for Part I

Everyday I feel like I am going to die.

It’s pretty difficult to sleep at night when you are afraid that you won’t wake up in the morning, leaving your 18 month old motherless. And in the *capable* hands of your husband who, when it’s his night to make dinner, relies on boxed Mac and Cheese. Without me he’d probably revert back to Kraft, leaving organic Annie’s behind.

Neurologic disorders are their own beast, I think. The symptoms are literally all in your head, and yet you feel them everywhere. My feet tingle. Sometimes I can’t stand the feeling of pants on my legs because my nerves are hyper sensitive. My hands go completely numb some nights. Just a minute ago I was pretty sure that my tongue had stopped working and that maybe I was having a crazy allergic reaction. When I touch the skin of another person, sometimes it feels like it’s burning.

I’ve been to the ER too many times this last year. At first it was chest pain, which was treated with Ativan. Turns out I have chest wall inflammation. Advil was much more helpful than the anxiety drugs, but I’m a woman so must be crazy. Then I went to a doctor for what felt like the flu in the height of the swine flu outbreak. She listened to my heart, which had become tachycardic. She thought I was having a thyroid storm. Nope. Just Lyme disease. (It would have been helpful to know it was Lyme then.)

Lyme is also extra special because it causes psychiatric changes. Remember IRENE from the Real World? Don’t you wish you were my husband? I swing between uncontrollable anger to lying on the floor thinking about death. Suicide is actually the leading cause of death for people with Lyme. When I was first diagnosed and reading about the disease, I couldn’t figure out why there were links to suicide prevention lines. I get it now.

And then there’s the memory deficits. I’ve always had a really sharp memory. My mom hates me for it. Pray that your children don’t remember every phrase you ever uttered to them! I’m also a word freak and can kick some serious Scrabble ass. But now, I have trouble remembering the word for “countertop” (yep, happened the other day). I don’t know how to spell things. And I often just stop in the middle of a conversation unsure of what we were talking about or what I was saying or what I want to say next.

My stomach hurts. My knees ache. I lose my sense of taste sometimes. I can’t sleep, and yet I’m profoundly exhausted. I get night sweats. Bright lights bother me. And low lights bother me even more. I feel jittery and can’t sit still. But I’m too tired and sore to move. And I constantly feel like I’ve just gotten off a Tilt-A-Whirl, that’s how dizzy I am.

This is my life. I don’t tell you this for sympathy. I tell you it because it’s real. And frankly it scares the shit out of me.

My Lyme Disease Story – Part I

by | Sep 12, 2015 | Anger, Anxiety, Bacterial Infectious Diseases, Caregiver, Chronic Illness, Fear, How To Help A Friend With Chronic Illness, Infectious Diseases, Invisible Illness, Loneliness, Lyme Disease, Sadness, Shame, Stress, Trauma | 3 comments

I was bitten by a tick when I was ten. It’s the only tick bite I remember, though a large number of those with Lyme don’t remember a tick bite. There’s no way to know if this bite or another was the culprit. I do remember a rash on my hand the summer I was pregnant, and I now wonder if it was from a tick, but there is no way to know. I always had weird medical things happen as a kid though, so we have wondered if maybe it’s been dormant for many years. Your immune system has an amazing ability to keep things in check (even if you’ve been given a taste of that forbidden formula).

And your immune system is amazingly susceptible to stress, which arrived on my, well, ashy, crumbling doorstep when I was eight months pregnant.

I had Kellen and went into my six week checkup, where they did a pap, which came back abnormal (yeah, my fall pretty much sucked), and gave me a flu shot.

Four days later (and four days after returning to teaching) my face stopped working. I was home nursing Kellen (or trying) and tried to smile at him, at which point I realized I couldn’t move the right side of my mouth. Earlier in the day I had noticed that it felt like I was talking with braces on, like my lips were having to make way for an obstruction on my teeth, despite not having had braces in well over a decade. That morning I drank orange juice that tasted dull as well as had a Starbucks sandwich that made me question their place as a food establishment.

It turned out that my taste buds were not working on the right side. After I finished nursing Kellen I decided to go back to school to finish teaching. I was really scared but didn’t want to deal with it at the moment (because the only two options I could think of were a stroke and brain cancer). As I was driving down the road I lost my ability to blink my right eye. I turned around, and we went to the hospital.

The good news is that it wasn’t a stroke or brain cancer, though the way the doctor told me it was *just* Bell’s Palsy made it seem so benign as though I hadn’t just lost full functionality of one side of my face and now looked like this:

“Are you sure nothing else is wrong?” I asked the ER doc. I just couldn’t fathom that the nerves in my face would stop firing just because they felt like it. The doctor assured me that nearly all cases of Bell’s Palsy are spontaneous and have no other underlying cause than a small virus. (Had I lived in the Northeast, it is likely I would have been tested for Lyme then as Bell’s Palsy is common in Lyme and the first symptom of it moving into your brain, when things get really dicey.) They gave me anti-virals and steroids. (It was because of this I stopped breastfeeding.)

Dan and I decided to head down to San Diego. I had taken a leave of absence from work because I was overwhelmed. The stress of the fire and the rebuild was compounded by this new development, and I knew that I was spread too thin. It has always been hard for me to walk away, and while it was sad, I am proud of my ability to say, “I can’t.” We left the day after Thanksgiving, a trip that was nearly thwarted by an incredible and overwhelming sense of anxiety. I couldn’t sit down at all because I felt so antsy and uncomfortable. It was one of the only times I’ve ever had the urge to scrub a floor. It’s unknown if this was a natural progression of the Lyme or because I had been prescribed Zoloft to deal with the PTSD. It’s been posited that SSRIs may actually exacerbate Lyme symptoms in some people (many also find them helpful).

That was also the day that the dizziness set in, and it’s kept a firm hold on me for over a year. I spent the entire trip in San Diego sleeping. When I wasn’t, I was scared. I truly thought I was going to die but was afraid of going to the ER because I didn’t want them to think I was crazy. I wish I had gone while in California.

I made a deal with myself that I would make an appointment with my neurologist in January if I was still sick after Christmas. I scheduled an appointment. That week I woke up and felt fine, nearly canceling the appointment to see the doctor. At that point being dizzy was the biggest issue; it was debilitating and frightening. The symptoms came back strongly the day before I went to see the doctor It would be the first of many cycles but also the clue that led another doctor to Lyme disease nine months later.

At first I was diagnosed with Benign Positional Vertigo, which is caused by ear crystals shaking loose. The test for this is tilting your head back to see if it gets worse. It did. But the exercises didn’t work. So an MRI was ordered. While I passed the muscle tests with the neurologist and chiropractor I was seeing, I drop things a lot (more than normal), so I worried a lot about MS, especially because I was told that mid to late 20s was typical for age of onset. With every click on the MRI machine I just hoped that I didn’t have MS and if I did that the test showed it. I didn’t want to be sick, but I also wanted an answer to why I felt so badly.

Click here for Part II.