Chronic Pain feels like...

Chronic pain is a difficult thing to explain.  I feel like a crazy person all the time.  If I had an oozing open sore, or hives, or a fever, or a bullet wound, a broken bone, everyone would be able to see what hurts.  It would be probably easier to treat, too.

Back story:  I hurt my back in 1998, then high jumped at Penn State for 4 years.  I received the best physical therapy there, they were awesome.  In retrospect, I think they did more good for me than the bad that the high jumping did.  The trouble got more troublesome after I graduated, and I didn't have my 3x a day miracle workers to take care of me.  I really, REALLY loved those people!  Physical therapy in the real world is a terrible, terrible waste of time and money.  $30 copay to get a hot pack and be told to do 30 sit ups on a ball?  Are you serious?  Is this 1982?  Idiots. So where was I.... 2004 I jumped over a friend (it was a stupid idea, we were drinking and snow tubing), he actually ducked and I flew right over him, landing square on my head, like, legs up in the air.  Crunch!  I blacked out for a second- then seemed fine- miracles!  But I have had neck issues since.  2005 Lyme's disease, I slept for a minimum of 14 hours for 3-4 months after that, and slowly was back to normal a few years later, but I don't think I ever fully recovered. 2008, very violent and traumatic labor with my daughter (ended up with a  c-section), I may have ruptured a disk and did damage to my SI joint while pushing- also haven't recovered fully.  Then in 2010 I had a planned c-section with my son, much better experience!  But carrying that giant baby around gave me sciatic issues that I still have.  I was so thankful they took him a week before his due date! He was 9lbs 4oz already.  I like to lovingly call him "meatball" and "the big easy", both fitting for that big sweetheart :) This year (2012) I was diagnosed with a wheat (or gluten, not sure yet) allergy.

I think that about sums it up.  My main diagnosis seems to be Fibromilagia because I have constant pain that is everywhere and makes me tired, but I don't think that is the whole truth.  I am still trying to find what is wrong with me, and what to do about it.  Not eating gluten has helped, but not completely.  It's more like when I do eat gluten, the pain is a lot more unbearable. There is something wrong, and I believe it can be remedied, but it's already been a very, very long road.

This is what chronic pain feels like for me.

-A car alarm, or alarm clock, that never ever turns off, and get louder or softer depending on the pain level.  Sometimes it is so loud and close to your head that it is hard to hear and process what people are saying to you. It's hard to focus, to stay on task, to remember why you walked into a room.  Sometimes it is in the background, and you can do a pretty good job of ignoring it and getting on with your day.  But it never really goes away for good, even if you take narcotics.

- At the worst part of the day, it's like someone is giving you an indian burn, but you can't break away and they just won't stop.  You want to punch that person in the face to get them to stop, but there is no one to punch, the pain is coming from your insides somewhere- but it's hard to even pin point where.

-Your back hurts, but so do your fingertips, your legs, your hair, things that don't even have nerve endings, so they can't possibly hurt,  so you must be crazy.

-Unloading the dishwasher and putting laundry from the washer to the dryer is a huge deal.  You have to give yourself pep talks, and do Lamaze breathing.  You get angry at yourself and the situation.  Why the HECK is this so hard to do?  I used to be able to bound up the side of the Penn State Football stadium like a gazelle, well, the first 3 times out of 9 anyways.  By the end it was a pretty sad sight.  The point is that knowing what you could endure then and what you can endure now is so different, leagues apart, that you feel worthless and low.  This is what I have become?  That is depressing.  On the flip side of this, you can dig a  huge hole and plant a tree, you can run full speed at the beach, you can do all sorts of things that only a healthy person could do- so you must be fine!  I find that the more intense or difficult a task is, the easier it is for some reason.  It's like the large muscles and adrenaline take over and the pain goes in the background, but you pay later.  Small, easy tasks are the awful ones.

- Everything is so daunting.  Toys on the floor you need to pick up, dishes in the sink.  Every movement and stretch and bend hurts, and you start counting how many you will have to do to get the job done.  Then you stop counting, it doesn't help in the long run!

- People get on your nerves way faster than they did before.  Dishes in the sink, stuff in your way, doing any extra movement is a commitment and a mountain to climb.  It takes pennies out of your piggie bank that is bordering on bankrupt in the first place.  You wish your kids' childhoods away, someday they will wipe their own butts, get their own juicies, fold their own laundry, be helpful.  But that is YEARS away.  You have years of it like this first.  Years are a long time when they are in front of you.  You feel like a bad parent because you can't fully appreciate the wonderful stages your kids are in.  They are great kids, it's not their fault you have so little to give.

- You have a few trusted people who can in some way understand what you are going through, thank GOD for them!  You only really talk to them about this.  Otherwise you feel like a downer, or that people think you are exaggerating,  or lying, or whatever.  You get sick of hearing yourself say the same thing over and over for years.  They just can't understand it, or make sense of it, and why could they?

-It feels like a low grade flu, body aches, joint pain, but no fever.  Nothing to show.

I have tried the following over the last 14 years:
- 4 Chiropractors for a minimum of 6 months per
- expensive high tech traction that left me in worse shape
- massage therapists- I found one who makes me feel better and not worse over all (YAY SHELLEY!)
- Shiatsu - I do like this, its gentle, but not quiet, something, enough to make a big impact
- Physical therapy
- tens unit
- raiki
- yoga and pilates (helpful, but not fixing anything)
- keeping active, exercising, stretching, eating healthy, keeping a healthy weight, lots of core exercises
- heat packs on back and neck every morning, and several times during the day when possible
- anti-depressants that were supposed to focus on the Fibromialgia (not very helpful, off after 6 months)
- Rx narcotics
- Rx anti-inflammatories
- Prayer
- Supplements- Glucosamine/condroitin/ Vitamin D (low on blood tests), Vitamin B, Fish Oil, calcium, iron
- New Dr- Osteopathic


So far the best plan seems to be sticking with supplements, not doing high impact exercise, which is the only kind I enjoy, getting massages as much as possible, taking anti-inflammatories even though I don't think they are doing much.   When I have a really bad day, and I think about how awesome heaven will be and how I want to go there more than twice a day, I take an Rx narcotic and it dulls the pain to a manageable level.  I don't ever feel out of it on them, just closer to normal.  Which makes me pretty sad.  I don't understand how people get addicted to these.  I don't get that AMAZING high feeling.  It just makes things less horrible.

There are some natural mood lifters that make my pain move further into the background and easier to ignore.  One of them is doing things that cause a lot of adrenaline.  Like, risky intense projects involving loud saws, or axes.  Doing landscaping, where there is a big difference when I am done- I feel so accomplished and that natural high I get from that is such a welcome reprieve.  Although that exercise causes so much more pain in the following days that I am inclined to stop doing any of that for a while.  But then I get bored, and down, and I still have this pain that is always with me anyway.  Normal life causes no adrenaline rush, with subsequent additional pain levels, but it's pretty boring.  More dishes in the sink, stuff on the floor, laundry to do, juices, meals, repeat repeat repeat.  But being a stay at home mom is a huge blessing because I have some flexibility to get to the gym and go to appointments. And I LOVE my kids, they are great! I want to have these years with them.  I am thankful for being able to stay home, I don't want it to seem like I am not.  Having said that, it's no Shangri la, as any stay and home mom would tell you :)

I like my new Dr.  She has a background in internal medicine, like my dad, which I like because they deal with measurable facts and studies.  She also has a background in chiropractics, but does not do rough adjustments because they are too damaging to the body.  I totally agree, I went for years, but did not ever get much pain relief.  It felt like my body was reacting to the snapping and cracking by getting even tighter to protect itself.  Some people swear by it, but I never personally found it to be very helpful.

My new doc did some very gentle pressure exercises.  I wish I remembered more of what she said.  She went from the head to my feet.  The basic jist is that I have injured myself so much over such a long time, that my body systems keep finding ways to compensate for what isn't working, but now I don't have much left to pull from.  She is opening joints gently, promoting my body to start healing itself.  It's an onion peeling process.  She said I'd feel pretty bad for a few days after the first treatment, man was she right!  For days the car alarm was next to my ear, SCREAMING constantly.  I am starting to get back to normal after 4 days.  I have some hope there.  I feel like she understands, she listens, and she has some solutions besides drugs.  Yay!

I am also trying to eat a low inflammatory diet that is high in phytochemicals to encourage healing, and eating less sugar.  My morning coffee is the final straw!  Not eating sweets is pretty easy if you cant have gluten, coffee and ice cream are still tough though.

I'll try anything.  I'd stand in a lightening storm if someone said they heard of that working for someone, ever. I know it can be better, and I'll keep trying to find answers, new things to try.  This is a huge battle for me, every day.  Not everyone can understand this, but some people can.  The whole thing makes me have to lean more on God miraculously helping me get through the days, and it also makes me super pissed that He doesn't just end this finally.  I hate waiting.  Does anyone not hate waiting?  Tell me your secret!  

I'll update as there are things to add.  If you pray, please pray for me, and thanks for listening.

FABRIC.  I have some problems with hording.  There, I said it.  One of my biggest weaknesses is FABRIC.  THE POSSIBILITIES ARE PRACTICALLY ENDLESS is what I say to myself as I carry bags and bags and bags into the car, and into the basement in huge piles.  What can you NOT make with fabric?  NOTHING.  So I always say YES! What am I supposed to do, let it all ROT in a LANDFILL?  Hecks no.

Last year I contacted a local upholstery business and asked for discontinued fabric sample books to make crafts with.  The lady was so sweet, and had me pick up a carload. Which would have been plenty, but months later she called me and said she was liquidating EVERYTHING and DID I WANT IT??   YES I DO!

4 Carloads later my entire basement was full.  Cut to this past week, I am sorting through it all (this was not my only free fabric supplier either, for shame, for shame...) and giving much away.  But I kept some outdoor fabric sample books for a little project....


Outdoor Pillows! I cut the samples out, matched 2 sides that had similar color stories but different patterns,  sewed them up, and stuffed them with old pillow stuffing.  Some neighborhood girls were a huge help stuffing! TADA!

The fabric and stuffing were all upcycled/reused so the project was a free one, minus the time.  I am planning on gifting many, using some, and selling what is left over.  They are water resistant, and all different, so they will be a great little kitchy addition to our back yard monster project (that's a whole other post!)

My hope is so teach some of the girls here how to use a machine, and let them go hog wild with all the free fabric- why not? It was FREE!  But I have had a really hard time finding the energy and time to actually do a sit down lesson.  They come over after school, when both kids are up from nap, and it's time to make dinner.  NOT the best time for a lesson involving needles.  Someday, maybe someday...

My soap box lesson during the stuffing times was that you don't have to have a lot of money to live well.  (It does help, not gonna lie)

The girls had to hear me rail for a while. Do they realize that not every kid in the world gets a free education?  That if their parents cant afford school, they just NEVER get to go? ladies, are you taking advantage of your free education?  I really believe in public schools- I learned a lot in high school.  I learned painting basics, and now I fill our house with silly art.  I learned how to use a sewing machine in home ec. class, after that you just need to look things up and work it out- Making things for yourself does not have to be intimidating.  I think feeling comfortable and fluid in learning and practicing new skills needs to be really really normal for kids at a young age, when they are willing to jump in a get dirty.  Before the insecurities and peer fear immobilize them. I watched my mom fearlessly tackle vacuums on the kitchen table, I am not kidding, that stayed with me.  I saw her jump in with screwdrivers, so I jumped into things with screwdrivers.  Thanks, Ma!

 I worked in public schools, I know they are not perfect.  But if we teach our kids to be curious and try and glean everything they can from what is available, they might be shocked later on to see how many tools they have in their tool belt.

The non Violent Hostile land Takeover of 2011


I can't stand ugly, disorganized, inefficient spaces.  You would never know this is you look at my house.  BUT here is an example of something getting MORE pretty, efficient, useful and great! Last (2011) Spring, I asked my friend, who's dad owns the property next to mine, if he would mind me taking over the great expanse of crabgrass that he owned and making it a community garden.  He didn't mind- YAY!  So my sweet brother in law Philip took a pick ax to it for days, and some neighborhood kids and I set out to separate the evil crabgrass from the innocent dirt- no small feat.  TJ and Ben did most of the work...

Success!  We then planted lettuce, Swiss chard, tomatoes, peppers, basil and kale, and had enough to share with neighbors for the summer!  The kids were such a great help, very curious and willing to jump in.  We saw lots of insects and creepy crawlies.  We talked about what it means to care about where you live, and why we should want to keep the neighborhood nice.  Don't they think they deserve to live somewhere nice?  I sure do.  God sure does. And as always, i gave a lecture on littering, par for the course.  

Glo helping last spring

 The Summer came and went, and there was lots of extra produce that the kids helped to distribute around the neighborhood- Success!

Kale 

Swiss Chard

This spring (2012) the kale was still looking great.  I showed the kids how to pick, wash, oil and salt the kale leaves to make KALE CHIPS!  They devoured wave after wave of kale chips.  Apparently they taste like kettle corn.  I dont really agree, but I was so happy they were stuffing so much kale in their sweet little mouths- they can say it tastes like Leprechauns for all I care.  YAY KALE!  Do you know how healthy that stuff is???  VERY! 

(holding up kale chips, in triumph) 

This spring we planted red and green lettuce, multicolored carrots, and a hefty perennial herb garden (mint, lavender, lemon balm, rosemary).  Pics to come once things grown in a bit and look pretty.  The markers were a steal from http://www.studiogblog.com/plants-natives/kitchen/rustic-french-diy-garden-tags/   They were easy to make and came out great!  I recommend.

We are hoping for a bumper crop and a lot of sharing and growing together.  I am so proud of the Coatesville Garden Club Mini Farmers-  YAY! 

 

HI!

Hi, I am Jen.  I do alot of things without keeping track or memories, and this is my attempt to share what I do with those who are interested, as well as keep a neat and tidy record for myself and my kids.  I like to explain how I feel in percentages.  I think that 96% of my brain is thinking about what's coming up, 3% lives in the present, and 1% remembers the past.  Fortunately, I have a few life long friends who remember most of it for me.  The past, or what I remember of it, was super fun and great!  But not nearly as interesting as what will be!
   I will probably be sharing about my family, our little urban garden and city beautification plans for our lively city of Coatesville, Pa, our CSA farm and wonderful Farmer Karen, church, God, Jesus, food, marriage, wheat allergy that is annoying the bejesus out of me at present, living with chronic pain,  friends, fun, brilliant ideas I steal from others, trash picking, fixing things up, art, kids, questions and observations.  I am, as usual, a good 10 years late to the technology party.  This is the blogging those kids keep screamin' about!  TADA! Thanks for reading!