I have a confession

My deep, dark secret isn't really much of a secret. Truthfully, I'd describe it as a well-known fact. It's pretty obvious if you've ever heard me discuss cultural traditions. 

My "confession"? I'm Southern. I was born and raised mere minutes from the Mason-Dixon line. I'm from the suburbs of a large city, so I have zero accent 99% of the time. But so much of the cultural traditions I grew up are decidedly unique to the southern portion of the US. This means I've always known home canned jam is better than store bought, I know the true meaning of the saying "bless her heart!" (it's not nice...), and all emotions, be it happiness, worry, sadness, grief, celebration, or anger, are all dealt with the same way: with food. 

So when I was told today that my mother injured herself yesterday and her knee is now in a rigid brace while they figure out what ligaments/tendons/muscles are torn, I promptly turned my car around and headed to the grocery store. She and my father are both currently working two jobs (mom used to be a teacher and now tutors in addition to her job, and my father is an adjunct professor in addition to his regular job), so having time to cook good, healthy food is hard enough already. Add in Mom being down for the count with the knee, and I knew they'd be stuck doing a lot of eating out, which they are trying to avoid. 

I got down to business, and in a matter of a couple of hours I had a large insulated cooler bag stuffed full with food: pulled chicken barbecue with homemade sauce, coleslaw, pasta salad, fruit, and a frozen, easy cook meal for later in the week (chicken fajitas). 

This is just the normal, right thing to do in the way I was raised. It's the same way many of my friends and neighbors think. Heck, the sweet elderly lady up the street feeds me just because she can! But what I don't understand is why this ISN'T the normal way of doing things in other areas of the world. 

Think about it: when your child/spouse/parent/friend/whoever is in the hospital, do you want to cook? What about when you've just broken your leg? Or when a loved one dies? Most of the time, cooking is the last thing on peoples minds during times of stress. But it's during these times when a good, nutritious meal is most important. 

So I leave you, my readers, with a challenge. Give it a try. Next time there's a tragedy, illness, or even a cause for celebration (who has time to cook when a new baby enters the family?), feed your friends and family. Make a good, healthy meal and drop it off. I can guarantee you'll bring a smile to someones face and let the people who are important to you focus on the important events unfolding in their life. 

Celebrating Mom

Like all 20-somethings, it wasn't so far back in my past that my mom and I were mostly communicating with yelling and furtive late night/early morning notes (to avoid crossing paths). I was becoming sicker with every passing day in my late teens/early twenties, was enrolled in an insanely difficult college program, felt like I had nothing left to keep living for, and like many hormonal, stressed, and depressed teens, all of this turned into a lack of a good relationship with my mom. Thankfully, as my life evened out, and a glimpse of light began to appear in the end of my tunnel, that relationship that had been missing between my mother and I developed. She went from being The Enforcer to being a friend. 

My parents, on their 25th wedding anniversary:

I know many people for whom the relationship with their parents is sorely lacking. I even know a few who have cut all ties with their parents for their own mental health. And I'm glad that my relationship with my mother is growing stronger with time and not weaker and more strained. Seeing what these friends have been forced to give up (for while most of them never had a decent relationship with their parents, there is still the hope and desire for that relationship that is lost when the ties are severed) makes me all that much more grateful for what I have. 

This year has not been an easy one for my mother. She was diagnosed a few months back with Crohn's Disease. Crohn's is an autoimmune disease where the immune system begins to attack the digestive track, causing large lesions to appear. The lesions cause a whole host of issues, from malnutrion and anemia to exhaustion and infection. In addition, Crohn's also causes a range of other symptoms, including inflammaory arthrtis, a rash that looks and feels like wide spreading bruising, muscle aches, damage to mucus membranes (causing dry eyes, dry mouth, etc) and more. 

Mom has tried a minimum of 4 rmedications at this point, and has already been moved to bimonthly infusions of the biologic agent Remicade (the same medication I'm on for my autoimmune issues, oddly enough). She's in pain, sturggling to figure out what she can safely eat without getting even sicker, and trying to adjust to life wth a serious chronic illness.

And through it all, she's been here to take care of me. Just since January 1st of this year, she has moved into my home on 2 seperate occasions to care for me after surgery. She's bathed me, done my laundry, cooked for me, put up with my griping, gotten me out of the house when I hit my limits with Cabin Fever, and even cuts my grass. 

Her help, love, and care, and our improved relationship in these last few years, means more to me than I can really put into words. 

Mom, if you're reading this, I love you and Happy Mother's Day. Oh, and don't let Dad eat your cookie dough*! Sadly, I couldn't find any cookie dough theft alarm systms to include with the dough for your gift, so you'll just have to watch him near the freezer. ;)

(My level of Normal-ness is beginning to make more sense now, isn't it?)

* You can make cookie dogh and freeze it on trays/plates in individual cookie sized balls, then put the balls in a container once they've hardened up. When you want to bake, just let them thaw out on the cookie tray, then bake like normal. Not an ounce of taste difference and it lets you make just a few cookies at  time. 

N.B.: I apologize for any typos. My actual computer is out of commission for the moment and the iPad app for writing posts is extremely iffy, as is the post editing page on Blogger on an iPad. 

Happy Thanksgiving!

A quick post to say Happy Thanksgiving to my American readers. We had a blast today with the entire family and no one jarred my SCS wires/unit. It was a bit weird because I spent very little time with the kiddos, and normally the kids talk me into a board game. This year, their parents all told them to please leave me alone because of the trial, which was likely for the best, even if it did feel odd. I managed to get a hug from L, my favorite little cousin, who is 3 years old and cute as a button. Of course, being a stinker, he  first had to hide and "refuse" to hug me, but he kept laughing so hard he almost fell over so the hiding didn't work so well. He's at such a fun age, when they start using whole sentences. Today he thanked my mom "for making yummy pies". (He's a true member of the family- he's a pumpkin pie fiend.) 

Some family fun:

Dad in a pink plaid apron.

Grandpa snoring away in his chair after dinner. 

Wait- what did you just ask me?!

My father turned 50 today. (Yes, I'm 26. I have very young parents. Grandparents, too.) Last night dad had a big blow out birthday party at my parents home with over 40 guests. Thankfully, my parents home is plenty big enough for that kind of party, so I could manage to maneuver fine even with the extra width of crutches. I made the rounds, as I knew nearly everyone there, even Dad's work buddies since I briefly interned at his company. I got all the normal "How are you?"'s, as expected, followed by the also expected, "How's the hip?" Breaking your hip 3 times before the age of 25 tends to make you the topic of gossip, so I'm used to that one, too. My standard answer is, "Still attached." Most people chuckle a bit and nod knowingly.

But after the normal questions, I kept getting asked a third question. It was one that blew me away that people actually asked.

"How's the pain?"

Most people tend to have issues acknowledging pain disorders. I get asked all the time about my hip, because broken bones and orthopedic issues are normal enough that even though what I deal with is a bit more extreme than normal (though nowhere near what some people cope with), people can relate. The pain, though? Most people have nothing to relate to it. I barely remember not being in pain, since I've spent 1/3 of my life in bad pain. Yet people almost never ask how I am in that regard. My biggest disability is the elephant in the room. I didn't quite know how to answer and found myself stumbling through.

I've been trying to figure this out. It's just... weird. Kind of unsettling, to be perfectly frank. Now to wrap my brain around all of this.

Good family are worth their weight in gold

Growing up, I was decidedly not very close to my mothers sisters. My mom is one of 7 children- her 2 brothers I've never met. Four of the five sisters lived here in town when I was a kid. (One of them moved away 2 years ago.) But despite having 4 of the 7 kids in one place, there wasn't much closeness between them. I remember dreading spending time with moms family, as my cousins were much older and bigger and frequently broke my toys. 

Throughout my teens, things slowly began to change, as the sisters began to spend more time together. But what really drew the family close was the death of the oldest sister, my Aunt Jayne, who lived in a convent out of town. (She was a Catholic sister.) My mom and the 3 aunts from this area all traveled to the convent and spent weeks there. My mom actually wound up staying the entire summer, spending 2 months living in a semi-cloistered convent after my aunt Jayne begged her to stay. Jayne passed on young, in her early 50's, from cancer. Despite the fact that she had lived away her entire adult life, doing only what Mother Superior allowed, her death left a hole in the family, and the wagons circled close. 

Since then, the family has become close. I can call my aunts when I need to talk or need help. They support one another, call each other, and text each other non-stop. It's still rather novel after growing up without this side of the family being close, but it's amazing all the same. 

These last few months, the signs of this closeness have become obvious. When I got my stomach bug last week and both my parents were at work, I was trapped in my house with nothing to drink (I normally only drink water or a very heavy vegetable juice blend that sounded disgusting). So I called one of the aunts, who was able to pick me up Sprite and drop it off on my doorstep. This same aunt has talked me through the process of unemployment after I lost my job a few months ago. She's been a rock lately. 

I'm now facing a spinal surgery this fall and there's a good chance part of the procedures will occur while my parents are gone on vacation. Since they are normally the ones who come over to help me around the house, I thought this overlap would leave me panicked. But.. No. I'm a bit worried, but I know I have my family. Couldn't ask for more. 

A is for Ability, not Addiction

My cousin got married last weekend. It was a beautiful ceremony, held at the Krohn Conservatory, filled with just family and some close friends, followed by a reception in which the food was good, the music was fun, and people actually danced. Yep, good weddings can and do happen.

There was one blight on the entire thing for me, though. Last Friday night was the rehearsal dinner, held at my mothers house. About midway through the night, I plopped down with two of my aunts, and we're chatting away. We're a rather *ahem* especially chatty family, which I'm sure comes as a complete shock.

Then it happens. My aunt calls me the A-Word. "Addict".

Considering the fact I live with 6 chronic pain diseases (RSD/CRPS, MFD, osteoarthritis, Degenerative Disc Disease, Fibromyalgia, and autoimmune inflammatory arthritis), my doctors and I decided years ago that one facet on my pain management protocol needed to be narcotic pain medications. There many facets to this pain management plan, though, including PT, anti epileptics, anti inflammatories, an SNRI (type of anti depressant used to control pain), monthly nerve blocks, and physical aides like the crutches and the wheelchair.

The biggest reason it floored me to hear this garbage spew out of my aunts mouth? Her oldest daughter had severe Crohns disease. The fact that even after years of caring for my cousin E my aunt had no clue, at all, the differences between proper pain control and addiction just about knocked me off my chair.

Some definitions:

Tolerance: When a body becomes adjusted to a substance and there is a less of an effect. This is noticed with many medications. There's that pesky period in the beginning when the new med causes side effects. This can be anything from cold sweats from a hormone to dizziness from an antidepressant. Then the body adjusts to it and the side effects ease up. That, my friends, is tolerance. Tolerance can, sometimes, also mean needing more of a medication to get the same effect. 

Dependency: This is when the body becomes very accustomed to a substance and gets cranky when it goes away. The most common medicines to cause dependency are things like anti depressants, pain medications, anti epileptics, prednisone, insulin, and even some cardiovascular medications. If you've developed a dependency on a medication, all that means is suddenly stopping it is going to cause some extreme discomfort, and in some cases, it can even be potentially fatal. If you're taking a medication that causes dependency, they recommend slowly tapering off when discontinuing. There are NO mental cravings for the substance at hand.

Addiction: Addiction is when tolerance and dependency are joined by a psychological craving for a substance. This is characterized by inappropriate behavior  in search of more of the substance at hand. Addicts will do things like steal, harm others, and worse, in an effort to get more of the substance they want. They will sell or trade everything they own. Their family structure is harmed by their behavior. 

I do not now, nor have I ever, actually craved any of my meds. I love the pain relief they provide, but if I'm having a lower pain day, I'll happily skip the meds and give my liver a tiny bit less work that day. To me, the narcotic pain meds mean Ability. Without them, I'd be fully wheelchair bound, unable to wear any clothes but ultra soft fleece, and nearly house bound. Take away all the other pain control tricks and I'd be curled up in the fetal position sobbing 24/7. So yeah, I find it HIGHLY offensive to be called an addict.

To quote my rheumatologist, when  I told him about this, "Saying you're addicted to narcotics is the same as saying a diabetic is addicted to their insulin. And last I checked, diabetics don't car jack to get more insulin."

Just for fun, an example of what proper pain control allows me:

Yep, that's right. I danced at the wedding. I've started to master doing the Electric Slide on crutches. It's a fun party trick, that's for sure! So for me, A is definitely for Ability.

Dewey's Story

While I was showering tonight, the song "If I Die Young" by The Band Perry came up on my playlist. And, as always, my mind went to an adorable little boy who left life far too soon- my little brother, Dewey. Since I talk about him rather often, as he taught more than I can ever express in the 10 years we had him for, I figured I'd share a bit of his story for those following this blog.

Dew was born in June, 1989. He was a healthy baby, fat as can be. Mom always jokes about how his fat rolls helped him sit up long before he could do it by muscle tone alone. ;) He was 2 years younger than me but a  fast grower and soon he was close enough to me in height to drive his big sister bonkers.

Everything changed, though, the day of his 6 month immunizations. His DPT shot was part of a bad batch and it ended up leaving thousands of children brain damaged. (I've seen estimates ranging from 1,000 to 2,000.) Everything was fine in the doctors office but less than 30 minutes later, on the drive home, Dew suffered his first Grand Mal Seizure. Over the next 10 years of his life, Dew would suffer thousands of seizures, often having 3 or more per day, despite seizure medications.

At first, the doctors swore it was a "normal" case of epilepsy and Dew would outgrow it. It slowly became obvious that both the initial vaccine and the ensuing massive, and at times uncontrolled, seizing had left brain damage in their wake. Despite the fact that no matter what antiepileptic and no matter how much of it they threw at him, the seizures continued.

I'd like to take a timeout in this already lengthy post to say something very important: I support vaccinating children. Yep, I have documented proof a vaccine killed my brother and if I am ever blessed enough to adopt children of my own, they will be vaccinated, on schedule. I view vaccines like this: If my baby brother had to die so that millions of children could live, then I can deal with that. It sucks, but I can deal with it. Vaccines save lives. Millions of them.

My parents tried everything to slow the progression of Dew's seizures and the brain damage that accompanied the lengthy and severe ones. The ketogenic diet, medications, even drug trials. When Dew was about 4 or 5, the reason nothing worked was finally discovered- he had Cystic Fibrosis. CF is a genetic illness that causes lung difficulties which are fatal. When Dew was diagnosed, the average life expectancy of a kid with CF was about 20. (Research and lung transplants have since improved this.) CFer's are also more prone to all types of infection, especially respiratory ones. And, as in Dew's case, CF often causes malabsorption in the GI tract. The medications Dew was taking to stop the seizures were coming out the other end completely undigested. Once we added enzyme capsules, the meds started working, but finding a combination that could control seizures like this was a difficult and uphill battle.

Over the years, the seizures damaged and/or killed off the majority of Dew's brain. He could no longer swallow correctly and had a feeding tube put in, used AFO leg braces to walk, needed a wheelchair when out and about, and he lost the ability to talk.

None of this ever seemed to phase Dew, though. He smiled all day, every day. He had a hug for everyone he knew and most people he didn't know. He never cared if people stared. Nurses could stick him full of needles and at the end he'd smile at them and hug everyone. He had the most adorable grin and knew how to use it to get himself out of trouble. And boy, could he get into trouble...! To this day, 14 years after his passing, his antics are legendary. His particular favorite thing was to steal the kitchen utensils, especially the tongs, then he'd "sneak" them off to the living room where he'd proceed to hide them under the couch. He'd get his head stuck under that couch about twice a day and he'd just lay there, thumping his feet on the floor, and wait for someone to come find him. My older brother or I would get sent in to "rescue" Dew and once we'd pull him out, he'd just laugh or try to get us to chase him around and tickle him. He loved to be tickled. The little goofball would even tickle himself, laughing up a storm the entire time, which never failed to make everyone else in the vicinity laugh their butts off.

I'll never forget the day Dew died. He'd actually been really health recently and hadn't been hospitalized in a few months. He had a massive seizure and was taken by ambulance. This was pretty normal, so I was sent to spend the night with a friend. Mom showed up at the door, though, at dinner time. I assumed Dew was doing well and had been released, so I argued with Mom, wanting to stay at my friends. Mom drug me outside and I'll never forget standing in my friends yard, looking up at all the cars in our driveway and knowing that Something Was Wrong. In the end, Dew had seized for hours without stopping, and eventually his heart and lungs gave out. There was nothing they could do. Our little boy, our Curious George, our precious Dewey, was never coming home.

He taught me more than I could ever imagine. I didn't develop health issues until my late teens and the lessons Dew taught me have carried me through many hard times. He taught me that everyone is worth a smile. That crying ought to be reserved for the big things. To take time to be silly. To love and appreciate your nurses and they will return the feeling. He taught me that I can deal with anything that comes my way. I may not always manage to do so in a proper Dew Worthy Style, but I try my best.