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. 

Puzzle pieces

I perpetually feel like I'm breaking, like another piece of falls out of place with every passing day. Like a small subset of patients with CRPS, mine likes to spread. It started in the outside of my upper right thigh, only, on Sept 4, 2004, at 2pm. The injury that triggered my CRPS (most cases are triggered by an injury) was a fall down 1 stair. Not a flight of steps- just a single, little stair. Further injury, of any sort, to the body can make the disease spread, and for me, surgery is a sure-fire trigger. If you think back over the last few months, you'll remember that I've had 2 surgeries since the end of 2013. Guess what that means?

Yep. It's now full body. The spread of the CRPS into my arms has been documented by 3 pain management physicians in the last two months, and I was referred for an aggressive series of Stellate Ganglion Blocks. These injections are basically the same thing as the SNB's I've been having done for years, just into my neck instead of into my back. My regular Interventional Pain Management doc, the guy who has done my back injections for years, sent me to his boss to have the series done. 

The hope is that we will be tackling this soon enough to bring it to a halt and get my arms into remission. At this point, I've had 2 injections done and my third is scheduled for 2 weeks from now. Honestly, I'm sure not at all sure if these will ever come close to buying me a remission. My current guess is no. But I'm certainly going to try, and if they help, then that will make me a candidate for a second SCS trial, this time in my neck. (And yes, even if you already have a SCS in a different portion of your spine, you still need to go through a trial again to get a second pair of wires implanted.) 

In the interest of full disclosure, when I started writing this post 4 weeks ago, the title was, "I swear I break a little more every day". Then, when I was out running errands a few days ago, it dawned on me- while things certainly can, and do, get worse on me on occasion, I finally have the needed tools to also help myself cope. Instead of being a crumbling piece of china that will never go back together, I'm more like a jigsaw puzzle, that both comes apart easily and can be slowly, and carefully, pieced back together. 

Image from EngineeringDaily.net

That certainly doesn't mean I'll ever be normal, fine, or even just not disabled. Far from it. Just like a puzzle is never again a solid sheet of cardboard after they cut the pieces apart. But puzzle pieces can be laid next to each other and form a very fragile semblance of a whole picture. And now that I'm finally working with a knowledge of what all the pieces are that exist out there, I can slowly start putting back together a life for myself. Just knowing that helps so much when things seem dark.

Sheep!

The KY Sheep and Fiber Festival was this weekend, and I managed to snag a ride with friends from my knitting group. As always, it was a blast! I got to shop, enjoy the colors and textures everywhere, see sheep, pet llamas and alpacas, and meet some online friends in person finally. One of my favorite parts of fiber festivals is the amount of non-wool options out there. I'm mildly allergic to wool, so I can't work with it (brief contact is okay, but no wearing it or knitting with it). But at places like the KYSFF? Racks of alpaca and silk roving for spinning! 

I wound up choosing to buy some dyed, unprepped alpaca locks, instead. I've never spun straight from the lock, so this will be an experiment for me. I want to eventually turn the brown/dark/red batch into fingerless gloves. No plans yet for the pinks/blues/purples. 

I also managed to snag 2 skeins of Wolle's Color Changing Cotton. This stuff is very popular in the world of knitters and as it's all handmade by a very nice woman, there are limited quantities each month. Getting it online can be tricky, especially the big skeins made for making shawls from, so I was thrilled to snag a Shawl Skein (185g) and a regular size skein (100g) at the fair. 

Ms. "Wolle" herself posed for a quick shot of her sweater, knit from her fabulous yarn.

Oh, and I got to try weaving! Decidedly fun. 

The day wound down with some Bunny Therapy (it was soooo hard to not give this fluffy little guy a new home, as he was up for adoption)...

... and some fluffy, and not-so-fluffy, sheep. The naked sheep always look so fed up with us silly humans. 

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. 

Spring is in the air

I've never been a big fan of winter. Far too cold for my tastes. Spring has always been my favorite time of year- not too hot, not too cold, not yet sticky with humidity. This year has been especially nice, since I have my own yard in which to plant flowers and start a garden (I bought my house late enough into the spring last year to make it tough to do any of this). 

My front flower beds have been in need of an overhaul, for several reasons. First off, the houses prior owner was a bachelor who did not enjoy gardening, and the landscaping made that obvious. Every since thing out front was a shrub. No flowers, aside from a few bulbs and a phlox leftover from the owner before him, and those the prior owner moved around haphazardly while doing yardwork. Add to that one bush dead from an attack of the Mold Spores of Doom and the phlox taking a heavy hit when we tore out and repoured the front walk, and you had some very sad flower beds indeed. 

With money being tight, I didn't want to buy many plants. I did cave and buy 3 of a purple perennial that grows to about 12" tall and has a single little purple flower on the tip of each stem. Thank to brain fog, I can't recall the name of the plant tonight, but they are very pretty and do well in the weather around here with minimal watering needed. My aunt gave me a few flowers from her own yard that needed thinning out, plus some snapdragons she bought for me, and my neighbor gave me a decent sized hosta when she thinned her own plants. All in all, I'm quite happy with how my front flower beds have come out.

Next up was starting the veggie patch out back. I wanted to do some potatoes, more carrots, garlic, and onions this year, so I got my hands on various pots and huge plastic containers to use as deep pots. These large totes are fantastic planters- just drill some holes in the bottom, prop up on some scraps of lumber to allow them to drain, and fill with dirt. 

Prepping the totes:

All planted and ready to grow!

The other big adventure going on right now? I've re-started Physical Therapy. PT is always a LOT of work, but very much worth it. It helps me maintain muscle mass (which has a tendency to vanish on me, between the CRPS and the scar tissue from all the surgeries), it helps keep my pain under control, it keeps me flexible, and more. This time around, in addition to the normal strengthening goals, we're working on improving my walking, including trying to get me down to using 1 crutch for real distances. Yesterday was my first appointment for this round and while I didn't hurt any extra last night, I'm paying the price today with overly tight muscles across the front of my thighs. I know from experience that that will lessen in the next few weeks, but right now my shuffle looks more like a drunk zombie lurch than a graceful shuffle. Now to just hope no one thinks I'm trying to eat their brains... 

Dictionary of My Life

Let's face it, I live in a world of TLA's. That's Three Letter Acronyms ;) . I never have posted a comprehensive list of what these medical terms and TLA's I use so often mean. Many of those coming to my blog are familiar with some of these health issues, but not all, and certainly not all of the various treatments I'm on for everything. So, a big bad list of everything! Okay, it's not quite everything, but I'm going to try!

RSD/CRPS- A neurological disease in which the sympathetic nervous system gets caught in a pain loop and winds up basically burning itself out. This causes extreme pain (CRPS holds the dubious distinction of being the most painful non-terminal illness known to science), blood flow issues and skin discoloration (what I call the Zombie Effect, or purple and white mottling, and Neon Pink, or spots of bright, bright red, are the most common), temperature regulation issues in the affected region(s), skin, nail, and hair growth issues, hypersensitivity to all stimuli (also known as allodynia), a variety of other issues.

Fibro- Short for Fibromyalgia Syndrome, or FMS. A neurological disease in which the nervous systems become hypersensitive to all stimuli. The overactivity in the nerves causes widespread pain. Issues like headaches, IBS, tremors, myoclonic jerks (a type of nerve malfunction that causes major muscle spasms strong enough to move the entire body), and more can occur with fibro.

IBS- Irritable Bowel Syndrome. There are three types, C, D, and A, which is short for Constipation, Diarrhea, and Alternating, respectively. 

Tachycardia- Overly rapid pulse. An average adults resting pulse is about 60-70 bpm (beats per minute). 

AI- Stands for AutoImmune, a classification of health issue where the immune system attacks the body instead of just foreign invaders like germs. Diseases such as Rheumatoid Arthritis, Psoriasis, Lupus, and more fall into this category. 

RA- Rheumatoid Arthritis. A form of autoimmune arthritis that causes joint destruction that can be rapid and severe. 

OA- Osteoarthritis. This is the standard form of arthritis that comes with aging. It is caused by wear and tear on your joints from overuse wearing down the cartilage, or padding, in the joint. It is commonly treated with oral anti inflammatories, most commonly NSAIDs (non-steroidal anti inflammatory drug) like Celebrex, Naproxen, and Meloxicam. 

FD- Fibrous Dysplasia. A rare genetic skeletal disease that occurs in about 1 in 30,000 people. A genetic flaw in (a) bone(s) causes the good, hard bone tissue to break down and leave behind a honeycomb like structure. This can cause the affected bone(s) to bulge and/or break, which can result in severe disability depending on location and severity. There are two forms, Monostotic (MFD) which occurs in 1 bone, and Polyostotic (PFD) which occurs in multiple bones. FD most commonly affects the "long bones", which includes the large bones in your arms and legs, ribs, and the skull and facial bones. 

SCS- Spinal Cord Stimulator. This is an electrical device that is implanted into the spinal cord through an (usually) outpatient surgery. A small battery pack is implanted in the back, side, or stomach, in a fat pocket close to the skin, and wires are fed into the spine. An electrical pulse is fed through the wires to help control pain caused by CRPS, Failed Back Surgery Syndrome, other back issues, diabetic neuropathy, and more. Patients use a remote control to control the intensity of the stimulation. 

SNB- Sympathetic Nerve Block. A type of injection done on the nerves where they branch off from the spine in what's called a Ganglion Bundle. These Ganglion Bundles branch off on the spine between the spine and the internal organs. These injections involve using a long, flexible needle to reach the ganglion bundle, then a mixture of medications including a numbing agent and an anti-inflammatory are injected to reduce inflammation. This can help reduce symptoms for patients with CRPS.

SGB- Stellate Ganglion Block. These are basically a SNB but done in the neck region in order to get to the nerves that control the arms and hands. These can be done from both the back and the front and use a much smaller needle than SNBs, as the nerves are closer to the surface. 

PT- Physical Therapy. .. Need I actually define this one? 

WWPT- Warm Water PT. Done in a heated pool, usually heated to 86 degrees F or warmer. My local therapy center heats to 89, which is comfortable even with the CRPS. 

OT- Occupational Therapy. A type of therapy used to help people overcome and work within limitations caused by a disability or severe injury. While PT works on gross motor skills, OT works on more fine motor skills and tasks of daily living. 

Forearm Crutches- Also known as Lofstrand Crutches, these are the most commonly use variety of crutch in the UK and Europe. In the US and Canada, underarm crutches are more commonly used, especially in cases of short term injury, as they are considered to be more stable. Forearm crutches are easier to negotiate and are less likely to cause nerve damage in the upper body, however, which makes them popular with those with permanent disabilities. 

Immune Suppressant- these medications suppress various functions of the immune system in order reduce inflammation and damage to joints and organs in those with autoimmune diseases. Many of these drugs were originally created for use in chemotherapy.

Biologics- A class of immune suppression made using recombinant DNA. There are a variety of different mechanisms these drugs use, which means different patients respond to different ones. Because these meds are more fragile than most, they are given via injection or IV infusion. They are more expensive and there will not generics of these meds anytime soon (great explanation as to why here), but they provide excellent options for patients who do not respond to chemo-type immune suppressants. Remicade, which I receive infusions of every 6 weeks, falls into this class of med. 

Sooo... at this point, I'm sure I've left out something. Actually, more like multiple somethings. But this covers all of the tags I'm currently using and then some. But, if there's ever a term I use that you don't recognize, feel free to ask. I don't assume people know what all these crazy terms mean- quite the opposite, in fact.