How to rule the world from bed

Since we’ve been socially distanced like the rest of the (responsible) world,* my husband is using his free time at home to help me refit the bedroom and bathroom.  My mobility is not as good as it was even six months ago, and honestly my environment has been difficult to manage for a couple of years.  I couldn’t make the necessary changes myself and due to the back-breaking nature of the central part of this project, my poor fella didn’t have the time or energy to do it for me.

It started with a night stand.  My night stand was a few Sterilite drawers covered with a pretty curtain, and it was a PAIN. IN. THE. BUTT.

I also kept most of my life in a giant fold-out desk that looks like Optimus Prime and Madame Garderobe from Beauty and the Beast shared a drunken night and an unfortunate offspring.

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The hot mess that was my room, sans the sterilite plastic drawers. You see my problem.

 

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“So what’s your story, kid?” “Oh, you know, dad was a transformer, got drunk in a lumber yard, and here I am!”

The swing-out drawers were heavy and difficult to manage, and they also took up most of the free space on my side of the room.  On my bad days I couldn’t even get the lock open, so I basically just learned to live without 2/3 of my stuff and kept my growing stash of medicine in a few cumbersome buckets in various nonsensical places around my area.

One of the things I resolved to do for myself this year is improve my self care, which obviously I cannot do if I can’t get to my self care stuff.

The bathroom is difficult to navigate too, as seemingly anyone with ANY chronic health issue can tell you.  Showers suck.  Baths suck.  Especially when you can’t get yourself out of said bath without causing more pain than what you had at the beginning of the whole ordeal.

To make a long story short, because I know you just want me to get to the part where I show you what we did and tell you where to find the Things used, we replaced Optimus’ love child and my Leaning Tower of Nightstand with a system of cubbies.  We got them from Target, and they were about $45 each.  We got 4, and that is the biggest purchase we had to make for this redo.

You can find them here.

The canvas boxes to go into the cubbies are $5 at any decent Wal-Mart, Target, or Chez Amazon. We got few from each, in purple, gray, and Navy/gray striped.**

I replaced the curtains that came with the house, a truly hideous gold and red beaded number that is like struggling with an octopus if you want to in any way alter their position, which we frequently do.  Besides all this my husband works nights and I am extremely light-sensitive some days.  We got four blackout curtain panels from Wal-Mart, which you can find here.

They’re the kind with rings, not the kind with a loop in the top of the fabric, so they slide back and forth really easily.  They are lovely and dark and keep the room cool in the ever-growing sticky Texas heat.  Plus they are purple.  I love purple.

The best thing about the cubbies is that there’s lots of storage space, and an equal amount of display space for my knick-knacks, of which I have many.  This means my pretty little treasures, mostly gifts from my husband that I love to see, are easily visible.  That by itself gave me a little hit of serotonin.  I can also reach everything I need with much less rib-shattering Sistine Chapel style reaching than before.

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This always drove me crazy. Come on, Adam. You’re not even trying. TOUCH THE LORD!

 

Now, about the bathroom.

Our tub is tiny.  A shower chair will not fit.  So I ordered a shower stool.  It is padded and sturdy and light and adjustable, and big enough for my derriere but also small enough to fit in our micro-tub.  It has a shelf for stashing the sprayer.

Oh yeah, the shower sprayer!

My only non-negotiable with the shower head was that it be removable and have a long cord.  The one I ordered has an 8 ft cord and a few different spray settings.  Frankly, I cannot tell a difference in any of the spray patterns, but it’s as effective as my stationary shower head.

I actually had showered the night before I got my bathroom stuff, but just on principal I went and shaved my legs so I could give it a test drive.  I’m not going to tell you angels sang and my hair had two times more bounce, but it was lovely to reach the middle of my shower, realize that I was in pain and exhausted, and be able to say to myself,

“Self…just take a break.”

My favorite realization was that if I just put the shower head on the under-stool rack, It would simultaneously warm the seat and keep me from overheating from a constant inescapable deluge of hot water.  This is the shower stool I got.

My one caveat is this:  For the love of Bob, please run hot water on the seat for a minute before you put your nekkid butt onto it.

There are a few more implements in the bathroom realm that I want to talk about, but they’re really more skin care items, so I’ll save them for later.***

Look, life is tough. Just because your body can be a jerk to you doesn’t mean you have to be a jerk to your body.  Think of it like a kid; your body doesn’t really know what it’s doing and when it gets sick, pretty much all it can do is throw out a series of instinctive responses to try to get its needs met.  Self care is just anticipating those needs and giving your body one less thing to cry for.  The changes to my living space did cost a little, but I made a lot of other alterations that were free, like setting up the area beside my bed to be more convenient. I did that before I ever thought about getting rid of the Ugly Sterilite Nightstand.  Or studiously ignoring the toilet cleaning until it resembles Jurassic World in there.  Self-care, man.

Take care of yourself!  You’re the only YOU you’ve got!

 

 

*Yes, I know essential workers still have to be out and about, and some people have no other choice.  I salute you, essential workers.  But allow me to point out that the RESPONSIBLE ones still practice social distancing and sanitization as often as possible.

**Apparently this idea caught on because I can’t find the ones we got at Target or Wal-mart.  They have several other brands though.  Search “canvas storage cubes” and it should bring up some good stuff.  Just make sure they’re the 11inch ones.

***This is Erin-speak for “I will never ever write about this topic again but I need to end this blog because my tummy hurts.”

Pandemic Check-In!

We are alive!

We are actually much more than alive.  We are very, very fortunate.  Everyone is healthy, and the current shutdowns haven’t affected us too much…yet.  I say that not to be pessimistic but as kind of a white flag to Murphy’s Law.  I know it can get worse, no need to prove it to me, thank you, move along, nothing to see here.

Many of you are being forced into emergency homeschooling because of the pandemic.  For you, I suggest you take a look at some of my #homeschoolwithouthomicide posts on IG ( chronicmamakitchen ) or Facebook (The Chronic Mama)  

It’s rough, guys.  It’s rough when it’s not something you were prepared for or inclined to do.  But it’s easier than you’re thinking, as long as you keep your chill.

I hear they’re delivering booze right to your door these days.  I’m just sayin’.

My little one is getting by on virtual playdates.  Honestly, they’re so nice it’s tempting to never go back, but I know in a few weeks I’ll be ready for MY playdate with MY cousin.  Until then, it’s nice that our kids can destroy two houses at once with the miracles of modern technology.

My teenager has discovered…coffee.  I don’t even know any more, guys.  At least he’s awake and ready to help with chores?

My husband works for a national chain of gyms, so they’re shut tight.  This means he’s at home with me, which is great, because he’s helping me a LOT.  This is an opportune time, since my body has apparently decided to develop some exciting new neuro symptoms that limit my ability to do ABSOLUTELY EVERYTHING, like any of us need more symptoms.  I’m working on getting into a neurologist, but meantime it’s just lovely to have an extra pair of adult hands to enlist, guilt-free, and another warm body to send on our infrequent grocery runs.

Another bonus of all this:  I’ve worn pajama pants every day this week.  Even better: My pajama pants have POCKETS.

I’m about to set out on a mask-making adventure that will probably take most of the weekend.  My hands aren’t up to much in the way of sewing and I don’t have a machine, but I can pop out a few masks for the faces nearest mine.

If you’re about to give a ten minute pillow hug to everyone in your family just to get some peace and quiet, you have my sympathies.  Please be careful, keep abreast of the news, but don’t give it too much of your time and headspace.  Remember:  Your first responsibility is to keep yourself healthy.  All else must take second place.

I want to hear how my other Chronic Mamas and Daddies are doing!  Drop me a line in the comments here or on social media and let me know I’m not just talking into the void!  Or not.  Void is good.

Take care of yourself!  You’re the only YOU you’ve got!

A tutorial for the maskless!

My husband says I look like Sub-Zero from Mortal Kombat, but I’m posting this anyway.

I know I have a lot of immune compromised friends out there, and since this is a site for parents, self-isolation may or may not be a possibility. Also, due to the shortage of masks, we are not able to just go to the nearest store and buy the personal protective equipment we need. There are tutorials showing how to turn a bra into a mask, but most of the designs are NOT fibro-friendly, either to make or to wear. I found one here that is easy to make and use, cheap or free to make, and if you give some thought to the materials used they can be much more comfortable to wear for extended periods.

Here’s how to source your materials:

If you can get to Wal-Mart, they have swatches of fabric in the craft section that are just the right size of one mask.  If you can’t get to such a place, just sacrifice an old sheet or shirt or something.  Cotton is definitely best.

If you can sew, all you need is scissors, needle, and thread.  If you can’t, just get a bottle of fabric glue for less than $2.

You won’t be surprised to learn that all of the elastic thread is gone, but FEAR NOT!  I didn’t want elastic digging into my ears anyway.  Instead, I snipped a soft ponytail holder to the right length and used it instead.  If you have no ponytail holders, you can use shoelaces or even rolled up strips of fabric.  Adaptation!

This site features a free, printable, extremely low skill pattern and tutorial for a mask.

Mask Pattern

 

If you try it, let me know on Facebook or in the comments here!

Erin vs. Shapewear. Two shorts enter. Two shorts leave. Medic.

How about a review for you guys?
Shapermint shorts: Are they worth it?
Although there’s some really good points, they’re not for me, or probably anyone else with chronic pain, fatigue and weakness. Shapewear is usually problematic for anyone with Fibro. It’s hot, it’s uncomfortable, it digs, it squeezes, it itches. However, if you have a Ponderous Belly (TM), Ponderous Thighs (TM), or any other Ponderous Parts (TM), sometimes it becomes more painful to let things flap in the breeze. At least for me. It depends on the day. Sometimes I’m a wild woman who cannot be contained by mere elastic and thread. Some days I like to be cocooned up like a caterpillar, safe from the seismic vibrations of my own body. My go-to for those days has been leggings with built-in compression. But since I am a girly girl some days a nice dress is the only thing that will do.
The Shapermint Empetua shorts are supposedly for this very thing, as well as preventing Chub Rub. I ordered a pair in black and nude.
When they came, I expected something of a struggle because of my hands and also the aforementioned Ponderousness.
Ten minutes later I was walking toward a bright light, hearing the voices of those who had gone before in Shapewear related coronary events.
I thought, “Surely if I leave them on for a few minutes, they’ll…I don’t know, expand?”  No.  It didn’t happen.
I am a 1x.  I ordered a 2x.  Then I returned the 2x for 3x.  Same near-death experience.
I refuse to go up to a 4x.  I’m getting a refund and buying some more nice leggings.  I don’t know why I ever doubted myself.
Now, on the plus side:
  • The shorts were thick and well-made
  • They breathed much better than I expected.
  • They were slow to roll down, although since they were too small they obviously did.  I’m sure if it had fit properly it would have more or less stayed in place.
  • They were not itchy, even though they were tight like a bad corset.
  • They did a good job of shaping my thighs, though there was so much compression around my midsection I looked like a busted can of biscuit dough on a hot summer’s day.
  • Their exchange center was very easy to use, and they had my exchanges back at my door the day after my return arrived.

So there it is.  Not my worst experience with buying shapewear online, but it was certainly predictable.

 

Take care of yourself.  You’re the only you you’ve got.

The Chronic Mama

It’s a cane….It’s a sword. IT’S BOTH!

Two weeks ago I had an incident where I nearly fell at my daughter’s recital practice.  I was fortunate to be with a very lovely group of dance mommies.  They were kind enough to pretend they didn’t see the sudden inexorable hold gravity had taken on me, but it was still embarrassing.  Especially considering I’d just watched Jasmine’s MUCH older teacher execute a beautiful series of leaps that I couldn’t do if you gave me a line of cocaine and lit my pants on fire.

The rest of the evening I couldn’t help thinking about how difficult it’s been to get into a standing position lately, and how very much I grab onto furniture when I walk.  It made me feel even more awkward to realize that I knuckle-walk like a gorilla on household items that are in no way meant to bear the weight of a girl of my squishiness.

I talked to my husband about it that night.  He and I together decided it was time for me to get a cane.

I fought it.  I hated it.  But I also knew what I would say to a patient walking the way I have been. I would reccomend a cane immediately and give them a stern lecture about fall risks if they resisted.

Robert spent a long time talking to me about how a cane doesn’t make me less attractive or strong.  He reminded me that I wouldn’t need to use it every day, that some days I walk like someone who’s never even heard the word “fibro.”  When that didn’t help, he did a thing that only he seems to be able to do.

He went online and found me a sword cane.

I was joking when I first mentioned that the only way I would carry a cane is if I were packing a sword inside.

He found this little gem on Etsy.

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It came last week.  It is a cane with a FRIGGIN’ SWORD INSIDE.

When I shared this little factoid on a fibro humor board I frequent, the response was almost completely uniform cries of “YES THAT IS A THING I WANT.”  Almost uniform.

Somehow, a few people seemed to be concerned that I wasn’t aware a sword was a weapon, and by concealing it inside a cane it is a (dramatic musical sting) concealed weapon.

I live in Texas.  I’m a Rennie.  I’ve owned swords for years.  I’m aware that it’s not a thing you want to carry just anywhere.  The sword cane was to make me feel better about the transition.

I know at least some of these buzzkills were trying to be nice.  I think.  But they seemed to be under the impression I was intending to unsheath it in the grocery store and run around skewering police officers.  Apparently I come off as a person that will do that kind of thing, because people seem to respond to me like that when I get excited about something.  Like, a lot.

Not one to idly dismiss the concerns of meddling strangers, I found and ordered a more everyday, utilitarian type of cane.  It’s coated in botulism and filled with lead BB’s, perfect for swinging at doctors who think fibromyalgia is a synonym for laziness.  It also folds up so it will fit in my purse!

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And it has pretty butterflies on it!

Botulism butterflies!

 

Take care of yourself.  You’re the only YOU you’ve got.

~The Chronic Mama

Review: Morpho Topical CBD Spray

Yes, it works.  But keep reading, because it’s important.

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I’ve had burning curiosity about CBD for a while.  Since now it can be cultivated nationally, I was tickled to get the chance to review a topical CBD product from Simply Transformative (and its sister site, Honey Colony).  The literature on their site points to a group of individuals who are so much more interested in detail and quality than I will ever be.  You can read about their Morpho spray here.  I could spout a lot of words like “bioavailability” but the bottom line is this: Their spray is high quality and has a few extra homeopathic ingredients that are touted as specifically helping Fibromyalgia symptoms.  I wanted to see if it really worked.

The box arrived promptly, and the company provided tracking through FedEx.  The bottle is a reasonable volume, and even though I used it on everything I could possibly think of, a little bit goes a long way.  The smell is light, a little bit like ginger, and the liquid is thin and has an orange tint to it.  I didn’t notice it staining clothing but I don’t wear a lot of light colors.  I would beware if you are wearing white.

As I mentioned, my brain has been itching to learn what CBD can actually do firsthand.  When I got the bottle, the first thing I did was spray it on my lower back, hip, and knee on the right side, since that is where my body has decided it’s going to express most of its pain right now.  I sprayed it on my husband’s back where he has all kinds of exciting herniations and knots.  After about 20 minutes, I noticed that the nagging pain on my right side was gone.  Not better.  Gone.  My husband’s back pain (which hadn’t been relieved by anything to that date), experienced a 2 to 3 point reduction on a 1-10 pain scale.  Not much, but it’s been ridiculously hard for him to find any kind of relief.  But it didn’t stop there.

I was asked to specifically test this stuff on my fibro pain, and while I’m well aware that Fibro-Monkey causes all manner of chaos in the body, I know exactly what they’re talking about.  That steak-searing, burning pain just under the skin that drains all your strength and makes all the doctors roll their eyes.

 

Look.  Even though I’m super excited about this product, I’m not going to tell you it absolutely took my fibro pain away.  What I CAN tell you is that I consistently experienced a 2-3 point reduction in that particular pain.  That may not sound like much to someone who doesn’t have fibro, but let me tell you I was grateful for it.  It made me comfortable enough to sit still on a day when the pain was like a cattle prod, first driving me to move and then forbidding it.  That kind of pain can make a person verifiably insane after a while, and it’s usually the last pain my oral pain meds touch.  Normally by the time I’m medicated enough to feel a reduction in fibro pain, I’m ready to hug the toilet.  The Morpho spray has reduced my need for pain meds to half my previous dosage.

 

The test I wish I hadn’t had to do

There’s one more thing I want to share about this spray.  It’s hard for me to write about, but it could be extremely important to your decision whether or not to try it.  You may be reading this thinking “Yeah, well, the placebo effect can do some wonderful things.”  I’d be thinking the same thing, and no WAY am I shelling out $40 for a placebo.

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The day after I got the Morpho spray, I lost my Emotional Support Animal.  She was 16, and so sick.  I used meloxicam (kitty strength) and a pet-specific CBD product to help maintain her quality of life.  She seemed more comfortable at first, but as the days of her sickness wore on it lost its effect.  Not to mention she began refusing it, and have you ever tried to stick a syringe or dropper in the mouth of an unwilling cat?  It ain’t pretty, and if your time with your kitty is drawing to a close it’s a hard thing to make yourself do.

The last night she was with me, before I went to bed, I sprayed a little of the Morpho under her lips.  She didn’t seem to mind the taste, and she went from periodic straining and crying to relaxed dozing.  She didn’t act dopey.  She still kept her paw in my hand and responded with pleasure to her favorite ear scratchin’.

The next morning I woke up to my faithful friend in the midst of a seizure.  I screamed for my husband.  He held her to keep her safe while I grabbed the CBD.  The Morpho was closer at hand than the pet CBD, and to be honest by this point I had a lot more confidence in it.  Though she was jerking and straining, it was the easiest thing in the world to lift up her lip, spritz some of the Morpho underneath, and massage it in.  Thirty seconds, guys.  That’s how much time it took for the seizure to stop.

I’ve been a nurse for 16 years.  I’ve seen hundreds of people die, watched them suffer and wish to God in heaven I had something to stop their pain and make their journey easier.  I’ve held the most powerful pain medications known to man in my hands and watched them have little to no effect.  I have also never seen anything stop a seizure that fast (short of IV medications that hit your nervous system like a Chuck Norris style roundhouse).  I would have killed to be able to have something like the Morpho spray in my pocket when I was a nurse.

So no, I’m not falling victim to the placebo effect.  I’m a professional, and I know when a pain measure works.  I am in no way suggesting that you use Morpho in lieu of physician-prescribed meds.  I’m not suggesting it cures all pain and sickness.  But I watched it make a dramatic difference in a process that I’ve watched a hundred times, gently and completely bringing comfort and ease.  The best thing I can say about this spray is that it gave my friend the relief she deserved.

 

 

Nitty Gritty Numbers

 

In case you need things broken down by the numbers (or just don’t have the time or inclination to read my full review—punk)  here’s a summary of how well Morpho worked on each of our different pains.  I came by these averages using a 1-10 pain scale because by now it’s a hindbrain function for me to rate pain that way.  Pain reduction was averaged from 3 or more applications.  In our experience, 15 minutes is about the time the topical spray takes to work.

 

Hyperalgesia (Normal pain amplified by Fibromyalgia, e.g. bumping into a wall hurts like someone gave you a good two-knuckle punch):  Reduced pain by 3-4 points.  However, it didn’t do much to prevent the pain, and since I’m pretty accident-prone I would have to carry the bottle with me all day.  Also one bottle would only last about 34 minutes if I sprayed it on every time I bumped my bootie.

 

Muscle Pain:  This is one my husband was able to help me with.  Between the two of us we were able to gather a LOT of data about muscle pain.  Morpho reduced it by an average of 4 points with consistency.

 

Joint Pain:  This was where I had my best results, as the Morpho usually reduced my pain to a 1 or 0.  Anyone with chronic pain knows that is the rare unicorn of medication.

 

Fibro Burn: As stated above, 3 point reduction in pain consistently.

 

There was nothing noted in the way of side effects.  I didn’t even experience an increase in appetite.  It dries clean, not sticky, and the scent is not a man-made fragrance but a by-product of the ingredients (it actually contains ginger and lavender).  That means if you have fragrance allergies, it’s less likely to activate them.  The spray is glycerin based, meaning that it doesn’t sting or itch like something that contains ethanol, isopropyl alcohol, or mystery sludge at its base.

I’m running low now, and I’m definitely ordering another bottle.  $40 is a lot of money in my world, but it’s also a lot of pain relief.  I never did have a lot of faith in most topical pain treatments, so I was skeptical going in, but I certainly got my money’s worth many times over.

A final note in the interest of full disclosure:  If you decide to order this product and mention my name at checkout, I do get a smidgen of money, honey.  It would be nice, but frankly I don’t care if you do or not.  My mission with this blog is to help Fellow Fibro Fighters with whatever talents I happen to have, and I’ll keep doing it regardless of whether I turn a profit.  But if you’re gonna order it anyway, I wouldn’t mind a little name dropping.

If you have any questions I’d be glad to answer them in the comments or on my social media pages.

Take care of yourself.  You’re the only YOU you’ve got.

 

 

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So I did a quick interwebz search last week for “best long-lasting drug store lipsticks.”  I love drug stores for makeup, especially places like CVS.  Heck, even the Wal-Mart beauty department is a deeply rewarding place.  You can get great cosmetics and skin care if you’re careful.

I wanted to do a review today on the top result for my search, Burt’s Bees lip color.  If you’re familiar with Burt’s Bees, you probably already love them.  They’re a cool company and put only good stuff in their products.*  My mouth is prone to cracking at the corners, and their lip balm is the only reason my smile doesn’t look like Heath Ledger’s Joker.

Now I’ve got another reason to love them, because their lipstick is great.  As much as I enjoy putting on makeup, I have no patience for makeup that needs to be reapplied again and again.  Like most of you, I’m lucky if I can summon the strength to put it on once.  If, by the end of the day it looks like my face melted and slid to the left, it’s just going to have to stay that way until I can get it washed off.  At that point I take the offending oozey-slidey makeup and put it in my ever-growing cosmetics graveyard.  Ditto for anything that makes my skin feel dry, sticky, irritated, or just plain gross, because it’s an all-day distraction that my addled brain can’t afford.

So when I read the rave reviews about BB lip color I hobbled down to CVS.  The only issue I had was a (slightly) meager color selection, but the shades were all pretty neutral, so there should be a color for everyone.**  I got Lily Lake, but beware:  The pics on their site aren’t really true to the shade.  Lily Lake looks purple on the site, but it’s actually a lovely rosy neutral color.  Pick your first tube from a physical store if you can help it.

Honey, this stuff feels amazing.  It’s not thick or waxy, it’s not slimy or greasy.  It’s just a thin, moist layer, like lip balm that’s had a few minutes to absorb.  And since I was specifically looking for durability, I applied it right before I ate my morning yogurt.  Then, once I’d licked the spoon clean, I gave my heathens both big ole’ smacking kisses on their foreheads.  My lips looked the same before and after these activities.

But wait, there’s more.  The following is a scale I’ve never used on a makeup before, but considering the facts of a chronically ill life I’m pretty sure this will be meaningful to you too.  A few mornings ago I was feelin’ foxy and put on a smidgen of makeup.  As per usual when my makeup is looking good I immediately started vomiting.***  Oh yes, my stomach contents, my innards, and a good sized chunk of my soul came out with great violence.  My mascara looked like tribal cheek paint, my foundation was ruined, one eyebrow was vertical three inches below the other.  And yet my lips were still soft and colorful. Even after the post-Vomageddon tooth brushing and mouth washing, Burt still had me covered.

The other appeal is the price; it’s right around $10, which is about the maximum I’ll pay for a lip color.  As previously discussed, I’m cheap like Scrooge when it comes to the makeup I buy.  Most of the hypoallergenic/natural ingredient lip colors are a hair out of my price range, but I think me and Burt are going to be a match made in heaven.

Take care of yourself.  You’re the only YOU you’ve got.

The Chronic Mama

 

 

*To learn more about Burt and his bees, check out the documentary here.

**To see their lipstick, click here

***If I don’t vomit, I cry.  It’s invariable.  If anyone can recommend an affordable, effective makeup primer that will help my makeup survive these events I’ll be glad to review it.

Ghosts of Kitchens Past

 

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A lot of people don’t know about my Great Grandmother, Emma. She was a precious woman who grew up in a North Texas “children’s home” (orphanage) during the great depression. All my childhood I listened to her tell stories of Buckner and the other children there.  We all loved to hear her talk about the very different world in which she grew up.   When she was older, she worked in the Receiving Home where new children could be acclaimated to life at Buckner.  The children’s home was so much a part of her life that when she was dying, she told us the children from the home had come to get her.  The little girls that she brought into the family there at Buckner came to usher her into eternity. That’s the legacy of Emma, my mama’s mama’s mama.

Buckner was evidently a good, solid place to grow up.  Gran Gran had a thousand memories there, and apparently others did too.  The Buckner Alumni produced a cook book filled with recipes from the children that had grown into adults there.  Any time there was a special occasion in my house, out came the Buckner cook book the way some people bring out Betty Crocker or Julia Child.  I’m fairly sure there are still crumbs from my very first ill fated attempt at baking cookies.

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On Halloween, we met a family that lives just down the street from us.  Our little heathens played together Friday, and yesterday we had dinner together.  The lady of the house and I share a love of cooking. We talked Friday about how cooking connects us to the women in our family, and that’s when we decided we should have supper. She brought dishes that she grew up with (her mother is from Belize and her dad is from El Salvador, so I’m REALLY excited to see what she comes up with). She asked me to make a dish from my family.

So naturally I busted out the Buckner cook book. It’s falling apart. The pages are scribbled with notes from 3 generations of women who raised me, taught me to be a Jesus-loving southern lady, and coached me even when I was an annoying little turd.

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I wasn’t prepared for the overwhelming sense of belonging and the tender memories opening these tattered pages brought on.  I love old things.  I love anything with human history, anything that’s been used and loved.  Items that have been used for decades almost seem to exude a presence, a glow from the long contact.  The fact that these recipes connected me to the women of my own family was a little overwhelming.  I could feel the memory of my Gran Gran as clearly as if she were standing over my shoulder.  Or more accurately, behind my back.  Gran Gran was a teensy tiny little lady.  I was towering over her at ten years old.

I measured and mixed, all the time hoping the dish wouldn’t come out tasting like old wet armadillo butt.*  This was especially important to honoring the traditions of my ancestors considering that we had company coming over, and the code of Southern Hospitality is inviolable.  If the casserole was gross, I’d have to find something to serve in its place, and that would take energy I just didn’t have.  It was touch and go there for a while, and I gotta admit some pretty dire scenarios flashed through my head.  But in the end, I had a nice smooth broccoli cheese casserole with gold-toasted almonds on top.  Did I take pictures?  Of course I didn’t.  Do you think my Gran Gran snapped a picture of her food every time it came out of the oven, sizzling and fragrant and golden brown?  No ma’am.  Do you think my granny snaps a picture of her perfectly burned Bachelor Button cookies every time she pulls out a batch?  Not a chance.  We have absolutely zero pictures of my mom’s pot roast.  I made the decision to honor that ageless tradition that….Okay, I actually just forgot.  But it turned out lovely anyway, cheesy with tender broccoli and just enough crunch from the almonds.  I’m sure I will be making it again and I’ll try to remember pics before someone dives into it.

And how was the evening, you ask?  Well, they left around 1am.  My teenager even forsook his computer and headset to come converse with us.  I think Gran Gran would have smiled on that.  She would have loved my kids very much, just like she loved all of us.  I had the privilege of knowing Gran Gran until I was 16.  I also had the supreme honor of helping to care for her in her last days, until she finally let the little Buckner girls walk her Home one last time.  It was nice to be able to visit those memories, and even nicer to be able to write them down for you guys to see.

Also, good to know my broccoli cheese casserole doesn’t bring shame unto my family.  I’d have to leave out an offering of sweet tea to appease their restless ghosts.

 

 

*Armadillos are a real thing.  It came to my attention years ago that some people in the northeast believe that the armadillo is a myth, like a jackalope or a unicorn or a good fruit cake recipe.  This is not, in fact, the case, as evidenced here

 

 

The Origin.

Guys, this blog has stuck around in my life longer than most of my doctors. At first it was just a little tool I had to keep the voices quiet and stave off the imps of self pity and isolation. Somewhere in there I fell in love with an invisible, silent audience. I learned that there are more people out there like me, broken and brave and stubbornly doing the impossible every day because they have no choice in the matter. If you’re new to this site, go take a look at some of my other posts before you read this so you’ll know I’m not a complete drag.

Earlier this month I exchanged guest blogs with a really cool Chronic Chick named Amber over at theworldseesnormal.com. Since it was a guest blog, I wound up distilling the tao of my existence into a couple of pages. What I ended up with was a nice introductory blog for anyone on my page, so like any good mom, I’m re-purposing it. I don’t mind telling you, revisiting some of these memories in enough detail to write them down was severely painful. It was hard as hell to write and I’m not doing it again, so here it is, in black and white.

I was diagnosed with Fibromyalgia when my daughter was two. I’d been having pain for a few years that no one could find the cause for. I ran the gamut of super-expensive diagnostics that diagnosed precisely nada. I was put on heavy opiates long enough to become completely dependent, then told I was a drug seeker and denied the medications that were allowing me to function even as they made me act like a complete nutcase. I took myself off opiates and learned to work through the searing pain. Then, I got pregnant and gave birth via c-section. I lost a lot of blood, and my energy level never quite recovered. For a long time, I thought I just needed better nutrition. I thought I needed to work out more. I thought I was just going through what all new mothers went through. After all, I was caring for an infant in the daytime and working full time as a charge nurse at night. My (step)son is older, and he helped a lot. Actually, a lot more than he should have had to. There were so many days when I seemed to bleed pain and fatigue, when no matter how I tried I just couldn’t make my body move. Work became more difficult. I went to the doctor and was told I was too fat and given the most cursory of examinations before being dismissed.

Then one night, a co-worker tapped my shoulder to get my attention. Though the touch was light, it felt as if someone were digging a spike into my shoulder. That spike stayed there for over an hour. That was when it clicked: I have Fibromyalgia. One of my oldest, most faithful friends has fought the fibro fight for many years, and I recognized the pain from the way she used to talk. I looked up symptoms, found a new doctor that actually looked me in the eye when I talked, and told her my suspicions. She thoroughly examined me, a lot more thoroughly than anyone else. She also actually looked up the diagnostic criteria for fibro and began checking tender points. I had a diagnosis, but I didn’t know what to do with it. There was no cure. The few meds that sometimes work for fibro, didn’t. I still had no energy, and no matter what variants of a healthy diet I tried it didn’t change. Caffeine didn’t work. Supplements didn’t work. I had to get through day by day, hoping that I was doing enough to keep my kids happy and healthy.

The holidays were especially hard. I’d always loved Christmas, but now I started to dread it. There was always pressure to work more, to do more, to take the kids more places and somehow instill the air with Christmas magic. Most of my memories around my daughters’ first few holidays are through a blur of exhausted tears. I remember one Christmas eve in particular. I was getting ready to go to work. I was going to put my daughter to bed, go work eight hours on my feet, come home, take heartwarming pictures of the kids opening presents, dress them perfectly, take them to Christmas festivities with family, smile, be engaging, make memories, live in the moment, and record all the Christmas magic for the years to come. Then I would take them home, get an hour of sleep, and go back to work again. I sat down beside my daughters’ crib, and I realized that I was too weak and tired to tell her the story of the first Christmas. My body throbbed so badly that I couldn’t form the words. I sat down on the floor, there by her crib, in the soft glow of twinkle lights, and wept because I couldn’t tell my daughter my favorite story in the entire world.

I’m not gonna lie, I was feeling pretty sorry for myself. That low place got way too familiar as time went on. I found myself on the floor more and more often, too weary and in pain to take another step. And I’d like to tell you that I always managed to pick myself back up, but the reality of chronic illness is far from that.

However, I discovered something when I was there on the floor (besides the cat’s toy stash under the fridge). I discovered I could get stuff done from down there too. I discovered how delighted my little girl was to have mommy on the floor with her and her blocks. I noticed my son could talk to me about his day just as easily when I was lying on the couch cradling a heating pad. I found out that in exchange for an extra hour of video gaming, my son would sweep and mop the kitchen while I took a nap. I realized if I went about it correctly, I could prepare dinner almost completely sitting down.

So that’s what I started doing. I figured out ways to do things sitting down. I began timing and scheduling my day to use my energy as efficiently as possible. I started showing my husband the new ways I had learned to do things. I talked to other parents with chronic illness, and I discovered they, too, had ingenious ways to get things done and be good to their kids.

At the time I had a little blog where I would chronicle the funny things that happened around my house. Through the blog I was beginning to find that if I could re-frame something unpleasant in a funny way, it was much easier to avoid the mires of self-pity that made life one long trip to the dentists’ office. The parents around me that were as sick as me or sicker seemed to have above-average senses of humor. They limped their way through life with determination and a steadfast refusal to take themselves seriously. These superwomen in comfy clothes somehow got everything done.

I watched all of this from the perspective of a nurse who has spent her career learning about controlling pain. Over time, the carnival that is the inside of my brain began to slowly assemble the data it was being fed. The new coping mechanisms for parenting through pain aligned themselves with the principles I learned in nursing. See, nursing is another field where weak and tired humans are asked to do the impossible flawlessly without a break. My body and mind have failed me, and I’m not able to be a nurse right now. But I did the impossible then, and I’m still doing the impossible, just like every other CI parent on the planet.

If you think of your energy as a monetary budget, you can more easily visualize this. A normal person has an energy budget like the bank account of an upper middle-class American. Regular deposits are made, and there’s a backup savings account to deal with any emergencies. Their resources aren’t unlimited, but it’s pretty much enough to get them through the ups and downs of normal life. When a car breaks down or a home repair is needed, they take a little from their savings accounts, maybe trim up their spending a little, but they can continue without much of an interruption in their lifestyle.

When a person has a chronic illness, their energy budget looks a bit different. The resources in the account are meager, and there’s no savings to cover overdraft. It’s as if they’re on a fixed income, with stingy little deposits coming at irregular intervals. It’s from this perpetually depleted resource we must draw to find the energy to make it through the day.

What about a parent with chronic illness? Okay, so picture that skinny little sad bank account, but with a big ole’ student loan payment being billed with merciless regularity.

See? Impossible.

Right?

And yet, if you’re reading this, if you’re a parent with chronic illness, you’re doing it. You’re doing exponentially more with exponentially less. Maybe you don’t know how you’re doing it. Maybe you think you’re doing a lousy job. But you’re doing it.

So going back to the “energy budget” concept. If you’re a sick parent, you have to make that budget stretch, just like every other budget in your life. That doesn’t mean that you and the people around you have to have less. It means that with a little creativity you can do more than you thought with less than you dreamed.

The first way to stretch that budget is to plug all the leaks. Leaks are parts of your daily routine that use more energy than they have to. Leaks are things healthy people usually don’t notice, because their funds are being regularly replaced the way they should be. Parents in pain can’t afford to have even a drop of their precious strength wasted on something that no one wants or needs. If no one notices or cares about having their clothes ironed, get yourself a bottle of wrinkle releaser and go take a nap! If your family doesn’t want complex home-cooked meals every night, order some pizza and give them vitamins.

Leaks can also be unfulfilled needs that we tend to ignore in our bodies. Hunger, thirst, fatigue, and pain can all cause a low-grade drain to our energy. Be vigilant about taking care of yourself. Medicate for pain or anxiety before going into intense situations, especially ones where your kids need you to be at your best.

Remember that although kids are whiny, instinctively selfish little people, they are also psychologically programmed to love you more than anything on the face of the planet. There is no love more complete, more selfless, than that of a parent and child. Let that love fill in the gaps when you can’t be perfect. They may be disappointed with canceled plans or frustrated with the differences between their lives and the lives of their friends, but as long as you keep a constant background dialogue of love, you can get them and yourself through anything.

Be honest with your kids about your health, especially when it has you feeling down. Hiding things from little ones doesn’t usually end well, so just be open about your struggles. My son began asking questions when he was about eleven or twelve. By then I’d begun to need more help with things I’d always insisted on doing myself, and he was noticing. So while I sat with him and taught him to help around the house, I talked to him about my body and why some days it seems fine but others I have trouble getting around. It was hard at first explaining it in a way that made sense to a kid, but I just slipped it into a hundred different conversations at every reasonable opportunity.

And it helped. I don’t expect every kid to be like Alex. They’ll have varying degrees of difficulty understanding and accepting the concept of chronic illness. Remember how hard it was for you to understand the permanence and indiscriminate meddling of your illness. But as he grew, he saw the truth of what I was telling him, and that was all he needed. He saw that I was trying my best. He saw that I was learning to deal with things differently. He also saw how deeply it touched me when he helped me. Even though he was required to do his chores just because his dad and I believe kids need chores, I thanked him often and from the bottom of my heart. When he couldn’t do his chores, or I helped him with them, I still told him how important he was to me. He knows my love for him isn’t dependent on what he can do for me, but there is none of the helplessness in the face of suffering that I see from other kids his age. He’s 15 now, and let me tell you, that kid walks tall. He has the same insecurities of any teenage boy, but he is secure in the fact that he can help the people around him. He’s compassionate, because he knows that everyone you see is fighting a private battle. He’s seen people criticize me, call me a hypochondriac, rail at me for using a handicapped spot, and tell me how delightfully easy my life is. He’s also seen how hard it is for me to do the simplest things. He’s seen the moments I don’t let most people see, moments when I give up, the times that I’ve broken down, the days I lash out at the people around me because of the pain inside me. He’s also seen me get up, make the most of it, choose to be happy, and find the joy in life. Kids watch us, and even if we choose not to tell them the truth with our words, we tell them truth with our day to day lives.

Encourage creative solutions. This one is difficult, especially for someone with less energy than the average bear. It’s also galling for a Southern girl who was taught to do everything I was told with an immediate and enthusiastic “Yes ma’am!” or “Yes sir!” But I’ve learned over the years that not only does creativity trump intelligence for problem solving, it also breeds enthusiasm and engagement. Anyone who has contact with the up-and-coming teenagers of the current generation knows that they don’t lack intelligence or work ethic, they simply lack enthusiasm. Well, let them solve their own problems. I’m not kidding. I’ve seen kids who’ve had their problems solved for them. While they may be excellent kids and turn out fine, their first instinct when they run up against a problem is to run back to their parent. My solution is to stand with my kids, shoulder to shoulder, and let them take the lead in working out a solution. Rather than expecting immediate, unquestioning, and exact obedience (which, let’s be honest, isnt’ that realistic anyway), if they come to me with a different solution they’d like to try, I do what I can to encourage it. Of course, there are situations where for safety or other considerations they need to do what I ask without negotiation. For these times, I tell them something along the lines of “Please just do exactly as I ask. If you think of a better way to do it, we can talk about it after and maybe try it next time, but this time just do what I’m telling you.” (or, in emergencies, saying the word “NOW!” at the top of my voice seems to work out fine).

Of course, both of my kids are arguers. They’re really, really intelligent so they have a lot of questions, and it took me a long time to learn that arguing is how they learn. It’s how they assert their independence, and how they find their limits. They would be that way no matter what my parenting style, though (I know because initially I tried the “do what I say when I say it without question” approach. The result was not a sliver less arguing and a lot more frustration and tears on all sides). I don’t have the strength to work against their nature, especially not when I see so many good and noble traits in them. So go with the flow. Figure out what YOUR kid needs, and put your precious energy into those specific needs.

Be patient with yourself and them. I was never called patient in my life until I married my husband and had two kids who both have anxiety and ADD. Did I mention my husband also has chronic pain, anxiety, and ADD? Lord help us. But I learned that in the battle to conserve energy, it is ALWAYS less draining to keep my cool than to lose it. It always takes less of my finite budget to take a deep breath and let things roll off. Slamming doors hurts my hands. Yelling makes my muscles hurt. Stomping around angry causes hip pain.

Please don’t think I’m some kind of level-five zen master who levitates through the house on a cloud of love and pixie farts. I’m a lunatic some days. But through that lunacy I’ve learned that love, honesty, and creativity can patch those energy draining holes and give you better access to what few meager resources you have.

Thanks for letting me share my story. You can email me at thechronicmama@gmail.com or message me on Facebook under The Chronic Mama. I’m less fluent in twitter-ese and instagram, but if you don’t mind waiting for me to remember those platforms exist and check them you can contact me there. Twitter is @riskywords and IG is The Chronic Kitchen. Everybody take care of yourselves. You’re the only YOU you’ve got.

The Chronic Mama

Guest Blog From Another Chronic Contributor!

Since it’s Blogtober (yes, apparently that is a thing) I went out (read: online.  Silly rabbit.  I don’t actually leave the house) and met a friend.  This friend has a lovely blog over at The World Sees Normal.  She’s also a recovering nurse and she’s a straight up warrior.  Read her story here, then pop on over to her site to read my guest blog on her site!

 

Where did this journey all begin?!? Honestly, somewhere in my childhood I would guess. I was always one of those kids that picked up even the slightest bug. Always sick. Never thought much about it though until I got older (in High School) when my friends started to notice that I was sick way more than they were and started to ask why. At that point we didn’t have any answers and wouldn’t for many years. Looking back now we can see where it all began. My junior year of High School I was hit with a case of Mono that just wouldn’t go away. It last for SIX MONTHS, at the time we didn’t think much of it, now we can see that the never ending case of Mono was most likely my first Lupus flare.

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Lets rewind and take a look at the journey that got me to where I am today. In the of Spring 2012 I was living the life that I had dreamed of. I was working as an RN, serving as charge nurse most shifts and helping to train nursing students and new co-workers. I loved my job, I loved that I was able to work three twelve hour shifts a week and that I had a job with direct patient contact. In January 2012, I was hired as an adjunct Clinical Instructor for a local nursing school and I was so thrilled because that is something I had wanted to do, even before I graduated nursing school in 2007. I also started working on my Masters in Nursing Education in January 2012, and I was so excited to be moving toward my goal of teaching in a nursing program. My life was on track and I was happy with my the direction it was going.

Sadly, in February 2012 all that changed. I was hospitalized for a week with a respiratory infection that no one could figure out. Looking back I can see that this was just the beginning of the decline in my health. I had to be off work for a MONTH at that point because I just couldn’t breath, despite all the treatments we tried. On top of having trouble breathing, I was also always exhausted, and was dealing with so much joint pain. More pain than I had ever experienced before. That July, I was diagnosed with Systemic Lupus among other things. Though troubling and scary, it explained so much. It explained why I had been feeling the way I had and the symptoms that no one could ever figure out that I had experienced over many previous years. In the months and years following my Lupus diagnosis I was also diagnosed with so many other life altering diagnosis that made it hard to see any kind of future for myself. Just to name a few, I was diagnosed with Fibromyalgia, Endometriosis, Interstitial Cystitis and other chronic illnesses. Not to mention the migraines that years later morphed into hemiplegic migraines. Following the Lupus diagnosis it became clear that I wasn’t going to be able physically to continue working as a nurse on the floor. And due to my health I not only had to leave my job, I had to step down from my teaching position with the nursing program before I even started. And I had to drop out of the masters program that I had only just begun. To say the least I was crushed. I just couldn’t understand why God would allow these things to happen and what I had done to deserve so many trials.

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At that time I honestly couldn’t see past the diagnosis. I couldn’t understand why my ability to do the things I dreamed about was being taken away. My job, furthering my education and the ability to have children. As I mentioned above I was also diagnosed with endometriosis. Having Endometriosis along with Lupus has made it so I will never be able to carry my own baby, which is something I have always wanted more than anything! As long as I can remember I have dreamed of being a mom and all the things I would do with my children. And all that has been taken away. I do hope to adopt one day if I get to a place where I can care for another person. At that time though I couldn’t fathom what I could have possibly done to deserve what was happening.

In the months (and honestly even years) following my diagnosis I struggled. I struggled to find my place in my workplace. I struggled to find my place in my relationships (family, friends, romantic) as I felt like nothing was the same even when others didn’t see it that way. I lost friends and relationships that I thought would be lifelong all because of my health. It was something I was going to be stuck with forever and couldn’t walk away from and was having a hard time accepting. And those people did the one thing I wished so much that I could do. They threw up there hands and walked away. Probably around 6months to a year in I began to see something had to give. Something has to change. I couldn’t continue going at things the I was because something had to give. So I searched and searched for a place I could go for support. Someplace I could go and talk to others who were living through the same issues that I was. A place where I could go and openly express my feelings without being judged, and also a place where I could find information on the issues I was dealing with. I looked for local resources and online resources, but I couldn’t find a place where I really felt comfortable. After spending time searching, it became clear to me that I was supposed to create the place I had spent so much time looking for. Attachment_2.png

After I realized that I was supposed to create this place of solace and education that I had been looking for. After I finally came to the realization I spent a lot of time researching support groups & educational groups. I wanted to find out what made these groups successful, and what made them flourish. So I did just that. I recruited a few of my fellow Lupies (aka someone with Lupus) to help me and we created a Lupus & Chronic Illness Support Group on Facebook. A group we called Lupie Groupies. My friends and I created a group where those of us dealing with chronic issues could go and be real. A place where judging others for their thoughts and feelings is NOT allowed. A place for those who were newly diagnosed, as well as for those who have been diagnosed for decades and everyone in between. A place to find education on their conditions and as well as information on treatments.

At first we were a very small group, but over the last 4+ years we have grown to over 600 members. When I started this journey I could never have dreamed that I could develop a support group that would grow to be so big! I have received such amazing feedback over the last four years from people in this group. People telling me that the group has given them hope, and that they have made life long friends in the group.

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In 2016 I began having Hemiplegic Migraines (stroke like migraines) that took over my life. I had a migraine literally everyday for 7 straight months. And as my mom tells me I became a champion puker (not a something I ever wanted to be a champion at). It was awful. Finally after being seen at the Mayo Clinic I was able to get some relief. But I had to quit my job. At the age of 31 I turned in my resignation and left a job I thought I would be in until I retired. And sadly since I had no income I also gave up my freedom in a sense. I had to move back in with my family. Don’t get me wrong I am so GRATEFUL for them and them letting me move back home. It’s just ideal at 31.

I took off six months per the recommendation from the Mayo Clinic and decided to try to go back to work. I found a great privately owned company that was so great to me. They should have fired me 12 times over before I finally was let go because honestly I was off work more than I was there and I only worked two days a week. But in Aug of 2017 I had my first seizure and had an accident totaling my car and ending my nursing career for good. This time giving my resignation was harder because I knew it was for good. So I knew I needed to find something to pour my heart into. And thankfully I had started this hobby blog in early 2017. So I poured my soul into my blog. And I found opportunities to work as a patient advocate where I work alongside other amazing people who are also going through daily struggles. Which encourages me to continue my fight.

Don’t get me wrong I would still give my right arm (just for reference I am VERY tight handed. My left hand is more for looks than function) to be able to go back to work. I am still mourning the loss of my career. I know mourning may sound like a strong term. But for me that’s the best way to describe it because nursing was something I knew I was called to do from a young age. So having to give that up after only working for 11 years is heart breaking. A couple times a month when I am having a really good day I have that thought of “I bet I could go back to work, maybe in an office and not a floor!” But then I remember just how ill I am and how that’s not possible. If you would have told me ten years ago that I would be back living in my parents basement, fighting multiple chronic illnesses, with no car (thanks to that seizure last year and no money for a new one) and that I had filed for disability. I would have told you that you had lost your ever living mind. But it’s true. That’s where I am at this point in my life. And as much as I am not okay with it, I am okay with it.

I know that makes no sense at all. But the last six years since my diagnosis hasn’t been all bad. I have found my tribe, those people in life that you know were meant to be there and will be there forever. And most of them, not all but most, are fellow spoonies. Because as much as I hate to admit it, friendship with a fellow Spoonie is just easier sometimes. Not only can I say that I am lucky enough to have found my tribe but I feel like I have been blessed with a second calling. I don’t feel like everyone is lucky enough to get one and somehow I got two. Well, maybe 1.5. I feel like I was supposed to get these conditions so I could use my medical background to teach, spread awareness and provide support to others in similar situations. And I love it!!! Do I wish I could make a little more income from it?!? Ya!!! But maybe someday!! Right now I just feel so blessed that I am able to take my horrible health and turn it into a positive. If someone would have told me this is where I would end up I would have laughed. But honestly I am pretty content. Do I miss work? Yes, yes, a million times yes! But I truly feel like I have found my calling! I was put where I am to be a resource, a friend, a blogger, a leader to those who are in similar places. I was put where I am for a reason and I have had to adjust to that and learn to live in that place.

With Love,

Amber

Amber is a blogger and chronic illness advocate.  Check her out at theworldseesnormal.com!