Tuesday, October 29, 2013

I think Prednisone ate my knitting mojo....

As I've spent the last 2 years trying to find the right balance and mix of immunosuppressants to give me ideal symptom relief, I've spent a good bit of time on prednisone. The steroid is a great immune suppressant and it works perfect for temporary situations, but it's dangerous to take it long term. Since I've been on it 6 months or more now, my rhuemy and I decided we needed to get me off of it. I've been having some vascular side effects (it's weakening the capillaries, allowing them to be far too easily penetrable, meaning meds that are injected but not into a vein are getting sucked up and I'm bruising and I'm bleeding too easily, plus blowing veins when dealing with IV's). So I weaned myself off and am now dealing extra symptoms. More arthritis, more pain, more skin issues, all of it.

So imagine my surprise when I suddenly felt the urge to Make Things. Not just the woodworking and sprucing up the house I've been doing, but I've been wanting to sew, make jewelry, knit, and crochet. I honestly don't think I've completed a single project this calendar year since I've spent most of the year with major arthritis issues. Hands and wrists that don't bend don't lend themselves to crafting, especially crocheting (lots of wrist rotation with that craft).

I listened to my Inner Crafter (which is about 10 years old most of the time and tends to insist shiney things are the best) and picked up a skein of Project Linus yarn that was still in a box from moving this spring. It's cheap acrylic boucle in blue and white, but perfect for a super simple crochet project that I can pick up and drop with no warning. So I started doing a Corner-to-Corner Blanket. It's fun. I'd forgotten that crochet and knitting can be fun- they had been mentally feeling like work for months now.

Complete and utter weirdness. I knew prednisone had weird side effects, but eating crafting mojo? New one to me! Been stuck dealing with weird side effects lately, or just a lack of crafting mojo? Working on some Project Linus projects? (All little kids need blankies!) Feel free to share! Also, if you're a Raveler, feel free to look me up there- my Rav name is DaapAteMySoul.

Sunday, October 27, 2013

Fall Garden

I've spent the last 2 days battling the dying garden and preparing for the fall/winter garden. This has involved a decent amount of celebration at the death of the tomato plants and gloating at the tomato plants over their demise. Don't me wrong, I love having enough salsa, pizza sauce, and diced tomatoes for the winter. But holy hell will I be excited to can those last few tomatoes in the next few weeks. The last few on my counter need to ripen a tiny bit more, then I can cook them up and be done!!

I had planted some broccoli, cauliflower, and lettuce in the last 2 months, all of which plants were still a bit small. But we seem to have skipped fall and gone straight to winter- from barely needing the heat on to nightly freeze warnings in only 2 or so weeks. Not enough time for the cold weather plants to grow. But these are my favorite foods and I didn't want to just give up on the plants. Then the lightbulb went off.

Mini greenhouse! Duh! You build a box round the plants with an angled glass top thats hinged. Then you can open the top during the day to let in fresh air, close in the early evening to trap in some heat, and the plants are safe from frost and freezing overnight. I managed to round up all of the supplies for free even.

I tore out the garden by myself yesterday. I went from this:

To this:

In just a few hours, working solo. Today was for phase 1- the biggest part- of the construction of the mini greenhouse. My good friend Joe came over to help out for a few hours and we made some serious progress. I'm thrilled! Now all thats left is installing a glass panel in the side wall that gets all the morning sun (which involves some caulk and 5 minutes), then building the glass top which will be a cakewalk.

(Yeah, I know, I look mad sexy in sweats and a hot pink bandana!)

The mini greenhouse as it is now:

These last 2 days, though, have left me beyond exhausted and in major pain. My max dose of pain meds is barely touching the pain, heating pads aren't helping, rest isn't helping, muscle relaxants aren't helping. I used both of my topical meds (Voltaren gel and a specially compounded topical pain med) on my wrists and got the pain down from a solid 8/10 to a  6/10. I wish the topicals worked anywhere else. I'm desperate enough to try the contortions needed to get them on my back and see if it helps any. I just wish I could still work on a construction project for 16 straight hours, inhale food, then sleep 6 hours, and repeat. Heck, I'd settle for being able to work 2 hours and not collapse at the end. Tomorrow is errands and I have no clue how the hell I'm going to pull that off. I think I'll call my aunt in the morning and see if she can run with me... 

Thursday, October 24, 2013

Handy Woman

Hi, my name is Cassie, and I love power tools.

Wait, this isn't Power Tool User's Anonymous? Damn.

I first used a framing nail gun when I was all of 11 years old. It was pretty damn comical, actually, since I wasn't quite big enough to handle the recoil, so every time I put a nail in the floor, it would push me back a foot. Picture it- a pipsqueak of a tween with a nail gun that weighed 1/10th of her body weight. I'd lean over, put a nail in the floor, fly back a foot, waddle forward 2 feet, and repeat.

It's easy for me to know why I love tools so much. They allow me to create, to change the world around me. Things take me a lot longer to do these days, with the whole being disabled thing, but I find that if I approach a project slowly, surely, and in pieces, I can still do quite a bit. And well, what I can't do I can often bribe my parents into helping with. I've been catching up on some planned projects this last week, so I figured I'd picture bomb the blog for fun.

First up, I finally managed to get rid of the hideous vertical blinds on my back door. I am not a fan of those things. The replacement is a system from Ikea that consists of 3 off white lace panels, each in it's own track and able to slide the full length of the door.

As I was trimming the ridiculously long lace panels, I realized I had more than enough fabric left over to cover the glass fronts on a cabinet in my kitchen. It's a liquor cabinet with glass on both sides, viewable from the kitchen and the dining room. I don't drink, so it's packed full of coffee cups and reusable shopping bags. Useful, but not so sexy. So I sexified it.



Steps to doing this (if you're interested):
1. Take the door off the cabinet.
2. Remove glass from door by removing the 4 small plastic pieces holding it in.

 3. Clean glass.
4. Cut some 3M Clear mounting strips (for those removable hooks) into very skinny little sections.
5. Apply clear adhesive strips to glass in several spots along each side (you can skip over where the plastic tension piece for holding in the glass goes- it will hold up the fabric for you there).

6. Attach lace panel to glass, watching the tension to keep the fabric taunt. Only removing the backing from the strips as you get to that side. Do each of the 4 sides (right, left, top, then bottom), then do the corners once the sides are anchored.
 7. Screw glass back into door, then attach to cabinet. Voila!

Last project of the week thus far as been finally assembling the drawers for the Ikea storage unit in my craft room. Now my pattern drafting supplies and fancy sewing scissors have a home.

Next up: finishing the kitchen table and saving my fall garden from the sudden and early winter.

Saturday, October 19, 2013

My Story- Monostotic Fibrous Dysplasia

I deal with a multitude of health issues, some of which are odd presentations and some of which are downright rare. So I figured I'd start a series called "My Story" to cover the details and medical nonsense behind what I deal with. Most of what I deal with is due to a domino effect starting with a single incident- when I broke my hip. To the time machine! (Yep, I'm a nerd. Proud of it.)

I was actually an athlete in high school, running track and dancing. When I began to have back pain and chronic UTI's, my mom worried and dragged 16 year old me to the doctor. It all turned out to be related to a trio of rather benign and easily enough controlled GI issues (IBS-C, Acid Reflux, and Gastroparesis), but testing revealed something none of us ever expected.

My femur was hollow.

Yep. Hollow. The right femoral neck, to be precise, not that any of us knew bones that well yet. I was dragged off to an Orthopedic Oncologist who diagnosed it as a Benign Unicameral Bone Cyst. Easy to treat- a single bone graft and you're golden. So I proceeded to graduated high school, turn 17 in July, then 1 month after my birthday, I had Hip Surgery #1 (HS#1) in Aug 2004. HS#1 was simple enough- they made two tiny incisions into the front of my hip, drilled 2 holes into the femur, then drained the cyst and packed it with donor cadaver bone. I woke up and demanded to know when lunch was. I actually returned the bottle of pain meds to the pharmacy after a week, untouched. Easiest surgery ever. Now, I just had to stay off my leg, complete zero weight bearing, for 8 weeks. Easy, right?

Wrong. I fell after 6 weeks and shattered my hip. Proceed to HS#2. This time a second doc, my Local Hip Reconstruction Expert (LHRE) joined the party and I was pinned and plated back together. This time, things were very, VERY different. The pain was immense. I was inpatient for a week and was discharged using a walker. It took months to get walking again. I was taken off my crutches on Christmas Eve 2004.

The pain never truly relented, though. When I overdid things, my leg would just drop out from under me. Not very convenient when walking between classes at college. It often felt like there was a railroad spike in my hip socket. LHRE spent a year looking for a cause for my pain. Nearly 1 year to the day after HS#2, we began to plan HS#3. One of the pins and a small screw implanted during HS#2 were coming loose. HS#3 was done in Sept. 2005.
My hip after HS#3:

The pain continued. My orthopedic team was at a loss, so they would throw me a prescription for pain meds 2 or 3 times a year and kept monitoring the cyst pocket that remained. Then, in 2007, we got word that the cyst was growing, and quickly. My family and I didn't really understand this- we were watching to see if the cyst would heal itself. No one ever expected it to grow. But we went back to the Local Orthopedic Oncologist and had surgery #4. Another draining of the cyst, and another round of cadaver bone. Things seemed stable enough and I was discharged from orthopedic care.

Fast forward to 2010, when my other health issues were becoming severe. I'd been sent to the Mayo Clinic Rochester. While there, the head doctor investigating my case sent me to the orthopedic clinic as he was concerned about my hip from the way I walked. That's when it happened- I finally got a proper diagnosis.

Monostotic Fibrous Dysplasia.

Fibrous Dysplasia is when the genetics of a single cell of bone misfire in utero. If it happens early enough in development, then the more extreme form of the disease, Polyostotic Fibrous Dysplasia, will present during childhood. In PFD, multiple bones, up to 60% of the skeletal structure, is affected by these weakened cells. PFD presents in young children and most often presents in facial bones. If the misfiring happens much later in fetal development, then Monostotic Fibrous Dysplasia forms, where only a single bone is affected. MFD patients usually do not experience issues until mid to late puberty. The single cells mutation becomes more and more wide spread. The mutation means that the bone cells can not properly adhere to one another, so the normal bone tissue is displaced by a fibrous lump that has no structural integrity. This often times malforms the bone, causing it bulge. I was "lucky"- my bone never bulged out due to the location of the cyst. If a big enough section of bone is weakened, then the entire bone will bow.

The Mayo Clinic decided to go the aggressive route when treating my MFD cyst, as it was starting to grow for a 3rd time. The location of my cyst means that a critical section of the femur is about as strong as a rolled up piece of paper. The cyst was also starting to encroach on the ball of the hip. Preventing Avascular Necrosis (bone death due to lack of blood supply) became a priority. So we planned to do 3 surgeries in 1 go. They removed all of the old hardware, as it was deemed too unstable to support my full body weight. Second came scraping out the cyst pocket through a large hole in the front of it, then doing a laser ablation of the pocket, before adding cadaver bone. Third came implanting a massive Internal Hip Replacement.

My leg post-op:

The huge new hardware is designed to take the weight of my body straight from the ball of the hip, through a pin, into the downward rod that runs to the knee, then through 2 screws that both anchor the rod and help evenly distribute the weight load.

I broke my hip twice in the months immediately following the surgery. The bone was extremely weak and even with the rod bearing 75-90% of my weight, the bone couldn't handle the remaining. The breaks ended up being a good thing in the end, though. They helped me heal faster and I actually gained a few small pockets of solid bone back in that area following the surgery. The most important thing is that for the time being, the cyst has stopped it's growth. Since it is a genetic mutation, however, there's always a chance of it reoccurring if so much as a single mutated cell was left. FD cysts love to grow, then stop, then grow, then stop, over the patients life. PFD patients often experience far less cyst growth after puberty, thankfully, while MFD patients seem to have very sporadic growth patterns over their life.

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.

Thursday, October 17, 2013

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.

Tuesday, October 15, 2013

Remicade and RSD/CRPS

As part of my health issues is weird autoimmune nonsense (technical diagnoses are Seronegative Rheumatoid Arthritis and Unspecified Connective Tissue Disease, aka "We have no clue what's actually wrong"), I take immune suppressing medications. I currently use 3 different ones: Azathioprine, Prednisone, and Remicade. The Azathioprine controls the issues I have with swallowing, helps prevent weight loss, stimulates my appetite, prompts saliva production, reduces my sun sensitivity, and a few other things. The prednisone is meant to be temporary- I'm actually in the process of coming off of it. We started it to help control things while I made the switch from methotrexate (an extremely common immunosuppressant) to the new meds and I'm very slowly tapering off.

Remicade is a biologic medication. You see commercials for biologics all the time on American TV these days, for some odd reason. The typical order of meds tried for autoimmune disease is Plaquenil (an antimalarial that modulates the immune system versus straight up suppressing it- it makes me vomit profusely), then methotrexate, sometimes the next step is Arava (not recommended for women with intact, working reproductive organs), then on to the biologics. Biologics leave you with little to no ability to fight off infection, they're very expensive at about $3,000 per infusion, and they require extremely close monitoring. Commonly prescribed biologics include Humira, Remicade, and Enbrel. Some come in an autoinjector and some must be done via a several hour long infusion at a chemo infusion center. I'm lucky- my rheumatologists office has it's own infusion room complete with goofy TV playing and very friendly nurses who know their patients inside and out.

Today was Remicade infusion day. I go every 8 weeks and see the doc, have blood drawn, then have a 2 hour infusion. We upped my dose today by 33% in an effort to get better control over the arthritis. Currently, the arthritis is very inflammatory, causing massive fluid buildup in every single joint in my body. The biggest hassle, though, is the elbows and wrists. The fluid build up impinges my nerves and causes pain and numbness in my hands and arms. Drives me bonkers, since it makes typing, net surfing, knitting, spinning, and even cooking more difficult. Since today was my 4th infusion and most patients see big results by 1 week after the 3rd, we upped the dose some. I've got my fingers crossed that this works.

The weirdest part, though, of the infusions is that once the Remicade hits my system, my RSD/CRPS pain flares immensely. I actually have to take extra pain medication in advance of the infusion to cope with the pain. The pain levels take about 1 week to completely normalize. Considering the fact a normal day for me means pain levels at a 5-6 out of 10 and a bad day is a 6.5-8, a pain spike means complete hell. I figure I'll spend the next week working on my design portfolio, ensconced in my very comfy recliner.I just wish I could get some answers as to whether or not this is a normal reaction to Remicade for an RSD patient. But since RSD is fairly rare and Remicade is neither for the RSD nor a first line drug, finding an RSD patient on Remicade has proven impossible thus far. My Rheumatologist has no clue either. La sigh. The fun of a rare disease.

Tuesday, October 8, 2013

Will the canning ever end??

I'm rapidly becoming convinced the answer to this question is, "No". I thought that by now my plants would be completely dead. But noooo. While the bottoms die, the tops just. Keep. Growing. I now have a tomato plant topping 12 feet. Yep, 12'. Didn't know it was possible.
For reference, that fence is over 6' tall, the stake is nearly 8', the plant goes 2' across the ground before going up, and it doubles over and the top hangs down as it's long passed the stake in height.

I'm, thankfully, down to 1-2 very large mixing bowls full of tomatoes each week versus the 5+ I was getting during peak season. This is this weeks take- the green ones fell off during a storm 2 days ago.

I've now run out of normal size jars and had to buy more. I had thought the 5 dozen pint and 3 dozen half pint jars I was given would be enough, especially as I'd bought a dozen half pints already. But I'm now down to the last few pint jars and have had to buy another down half pint jars. I'm making one last full size batch of pizza sauce today, as I've been using it on pasta and other such things, then will be a half batch of salsa. After that, all content will become jars of diced or stewed tomatoes. Nothing fancy, at all. I'm out of tomato cooking mojo it seems.

Right now the whole kitchen smells like vinegar and lemon juice as I'm trying to get hard water scale out of the bottom of some of the jars I was given. Give me 20 minutes, though, and the whole place will smell like cooking onions and garlic. Thankfully, I'm planning grilled veggie sandwiches on garlic clove bread for dinner. Give me a day or two and I'll post the recipe for the sandwiches- they are insanely yummy.

At this rate, I'm going to have to rename this blog "Self Medicating With Food" with how much cooking I've been doing lately! And yet, somehow, I've lost 5 lbs since losing my job. Trust me, I'm eating, a lot, but apperently less stress+ slightly less pain= less weight. That or my autoimmune issues, which are prone to making my weight randomly drop, decided to flare up. So long as my weight stays in it's ideal range for me (as decided on an individual basis by me and my doctors), then it's not something I'm worrying about.