Essential Oils

I've said it more than once. More like a million. But its the little things for me. I am just discovering the wonderfulness of essential oils. I won't pretend to know everything there is to know about it. But I'm really interested in learning more. I always put a Altoid mint in my mouth first thing because its so pepperminty (yeah I made that word up, roll with it!) that it blasts through the fog in my brain in the morning and gets me up and going just by that punch of mint to my senses. So the other day I was feeling really anxious so I took some lavender oil to work and was going to put it in my warmer in the office and just see if that would work on calming me. The thing is, the guys at the shop loathed the smell of lavender. Way to girly for them. (Um, whatever, see the door? It says exit.) But to be nice I turned the warmer off for a bit but my anxiety returned. Then I had a lightbulb moment. I had recently attached a ribbon through my hoodie zipper that I always wear. Long story on the ribbon, but just keep rolling with it. Anyhoo... I saw the ribbon and was like AH HA!! Grabbed the essential oil and put some on the ribbon. Viola! A subtle scent of lavender wafting up to my senses and the calming began again. I am absolutely giddy at this simple but ingenious idea. Looking forward to trying different scents for moments like those. Thats it. Just a little ah ha moment that I thought I'd share. Hope it helps some of you. Have a blessed and amazing day!

Can we talk weather for a minute?

I know. I know. I am so random! But fibromites usually are. We have to say exactly what we are thinking exactly as we think it --- or--- we forget! LOL! Okay, its funny but not. Know what I mean?

I'd like to talk a bit about weather today BECAUSE its definitely messing with me today! Well, for the whole week really. But my body has finally had enough. Freezing temperatures are not kind to people with fibro and chronic pain. People with arthritis can feel it in their bones when the weather is changing. Often before healthy people see it on the news. I am a walking barometer.

This week has been freezing. Truly freezing. Had to get a heated water bottle for the rabbit and a heat lamp. So while he's all comfy and basking I'm all tight and crabby. HA! I can't compare my pain to your pain. I don't know who has the worst. I've never cared about measuring pain like most people. Pain is pain! I'll assign it a number if that's what it takes you to understand but really I am in pain every day. It just varies. Some days are better than others. Some are too horrible to even want to remember them. I'll have them again sometime, lets not relive until we have to right?

As I was saying freezing temps. And now snow. Two days of snow. Tomorrow the freezing rain starts. Oh joy! I do try to stay positive. LOL! Don't worry. The whole post isn't going to be me babbling the entire time about nothing. I'd like to give you some of my tips and tricks. If you have some I haven't mentioned please take a moment to add them to the comment section so that I and everyone visiting the blog, can add it to their arsenal. Thank you.

I am not going to talk about muscle relaxers and pain killers for this post. Everyone has their own medicine closet to take care of what ails them. It varies so much that I'll leave that to you and your doctor.

I can't start the day without a shower. I always say if I make it to the shower, i'll be okay. So a nice hot shower first thing. After the shower where most people rub on body oil, I rub in a topical pain cream. I 'try' not to do the stinky ones during the day if I can help it. I like sombra. I can put it on and it will smell but by the time I'm done getting ready the smell is gone usually. If you have time, a nice stretching session is beneficial. I'm a working girl and have a family so I don't get to do that stretching session every day. But do try.

When its cold like this the muscles get so tight. And with the rods, I really notice it. So I do try to put on a heat wrap before I go outside. Like Thermacare. Or a storebrand. But the magnetic heat portable heat pads are a must for me. I just recently discovered that the dollar tree has them. I cannot tell you how much that will save me! And if I don't put one on, I make sure there is always one in my purse. Better to be prepared.

They make a portable heat wrap that is battery operated. That's next on my list. That would be the way to go for me. I saw them at walgreens!

Dress in layers. I am always too hot or too cold. Usually too cold. ;) I have such poor circulation that my hands and feet are icicles almost all the time. But its nice to have layers so you can adjust for comfort. I do have the hand and feet instant warmers as well if it gets too bad. Those are just tucked into the side pocket of my car door so very handy.

My husband (if he's here) starts the car a minute or two before I have to leave so its warm. Such a little thing that is HUGE in my book. If you have a person that is able to do that, its a very nice treat. Maybe you could do something nice for them in return.

I like to have a heating blanket even in my car. They make adapters so just plug that bad boy in!
Total life changer for me! Are you noticing how I like to be warm?

My tens unit will help with keep the circulation going as will a brief walk. I can't go far. My knees are horrible! But I do try to get some exercise in. Usually I walk in the pool by our house. Exercise is exercise. Just get up and move. You don't have to do a lot. And with Fibro a lot of people cant because repetitive movement is killer. But in the pool it takes all the weight off and is so gentle on your joints etc. Worth a try! I know I feel better when I go. Hard to force myself to do it when its snowing, but hey. I do feel better once I am done. And I always reward myself with a little break in the hot tub after.

So not a ton of tips. But hopefully you found a few helpful.

And just for record keeping purposes, pain level is a solid 8 today.

Scar Tissue & Nerve Pain

Since the scar tissue is giving me fits today, thought I'd talk about that a bit. Of course nerves were damaged and severed during the scoliosis surgery. How could they not be when you are cut open and pulled apart? Sometimes that feeling of a white hot branding iron becomes too much. Sometimes it feels like a red hot blade slicing into me. Quick flashes of intense burning. Thats how I would describe it. I would imagine thats exactly what getting stabbed in the back would feel like. Out of nowhere. I can manage with the stabbing feeling if its for just a few hours. But when it goes on endlessly it often becomes too much.

But as much as I hate that burning sensation I loathe that white hot branding iron one even more. Just like someone stuck a branding iron in the fire til it glows past red and into white and then just presses it into my back. That section just between the shoulder blades... OMG! That one I can't handle. Thankfully the pain specialist I was seeing had me try lidocaine infusion. That helped so much. Calmed those nerves right down. It was lovely. Eventually I was put on lidocaine pills and I get that pain less often. Having the lidocaine patches to put on my back between my shoulders and neck was such a blessing to have in my arsenal too. But those are gone now. Insurance won't cover them since I've never had shingles. MMMMK... Doesn't make sense to take me off what was working but... I am not paying $900 for them either. Thats ridiculous. The dr office did give me some lidocaine ointment to try. But the results are not the same. Very dissappointing.

So thats about the nerve pain in my back. I'll get shooting sparks down my arms and legs randomly too. Thats fun. Just be minding your own business and BAM! Can't tell you how many things I've dropped when it comes out of nowhere or how my legs buckle when they get zapped. I try to stay off ladders because you just never know when those bad boys are coming.

The scar tissue on my back is pretty severe. Not from the outside but from the inside. I went YEARS thinking that my actual muscles were caught on top of the herrington rods. It seriously feels just like that. Well, low and behold while getting trigger point injections for the fibromyalgia my doctor tried myofacial treatment on that area. Injecting the scar tissue itself. Thats what she said was across my rods. Bands of scar tissue. And it gets tighter and tighter making that pulling sensation worse and restricting my arm movement. So now when it gets hard to get full arm movement I go into her and ask her to do her magic. Oh my goodness. Such blessed relief! I don't realize how tight it all gets until she goes in and injects. She's really a life saver in my book.

The scar down my spine is jagged but thin. With a few raised keloid areas. I had a few inner stitches that didn't disolve and got to be like little rocks. We got most of those out with tweezers. Felt much better. But a few areas have those keloid scars and I'm thinking its caused from a few of those stitches that were too far under maybe? Don't really know. They are just there and super ugly. The part where they did the bone graft is like a wide fat worm. Raised and varies from red to purple. I tend to scar horribly. I discovered that after the fact. Oops. Nothing I could have done anyway though. So it is what it is. I don't let my ugly scars limit my apparel. I earned those battle scars so I am not going to hide them. If people have a problem with it, well, its there problem. :)

Pain level is currently a 6. The stress of work and standing too long is a big factor today. Will try soaking in a bath with epsom salts and then laying down on some ice packs shortly. Do try heat AND ice. Alot of people don't do the ice and I was one of those people for a very long time. But alternating between the two really does help me.

A few years

The first few years I did relatively okay. "I" think. Sometimes the pain would get me. Going to the doctor didn't 'do' anything. Xrays to show the rods were still there. (Have I mentioned I hate that statement?) Physical Therapy and a few pain killers. Not alot of help. Ice and heat. Ice and heat. I couldn't lay in bed for more than a day because I swear my back gets weaker and its harder to get up. But I kept going. No one likes a whiner right?

Enter stage left--- Numbness in the center of my back. Just above the shoulders. Maybe a 2" square. Can't feel a thing. But boy do I feel the prickles and needles racing down my arms and into my palms. Or down my legs and into my feet. Pain days creeping up a little more often than I would have liked. But I kept busy living life. You gotta keep doing. No pain, no gain, and all that jazz. I loathe that statement as well. No pain, no gain. YOU try it buddy. Thats what I wanted to shout. I went thru alot of pain and the only thing I gained was frustration at the doctors and more pain for me.

I eventually stopped going to the specialist. His work was done. Nothing more he really wanted to do to help me. Found a couple good physical therapists to do what they could. And just went with whatever came with the day. But now I'm older. And its all becoming known. The future that no one told me about is here. I am finding that the area above and below my rods are breaking down. Call me a idiot but I never realised that would occur. I had the fix all surgery remember?

I went to my primary as long as I could. But as she was very nice their wasn't much she could do. Prescribe some anti inflammatories. Recommend ice and heat. The usual. So finally I went to a pain specialist. I went to their physical therapists and was shown different treatments to help. Like Laser Light Therapy. THAT my friends is a true wonder. If asked I would have scoffed and laughed at a 'light' making me feel better. But I am not laughing any longer because it worked! Muscles finally unbunched enough to let me breathe. Made me feel like melted butter for an hour. Such a nice respite. I just don't realize how tight I get. Even with muscle relaxers and anti inflamatories... I walk like a eighty year old grandma. I don't meet peoples eys in restaurants anymore. I don't need or want their pity.

Its frustrating to me. To hurt all the time. Not always my back either. My knees hurt so badly now that it almost over rides all my other aches. Almost. Neck, tailbone... Those are couple more areas. Crud even some days my elbows woud ache for no reason! Whats THAT about? But seriously, touch me and I'll flip out. The thought of people touching me is unfathomable. I keep everyone at a distance now. I have come to loathe hugs. Of course I do hug as necessary but I really try to be the initiator now instead of having them pull me down for one. I like to hug on my own terms and when I am braced for it. LOL! Sorry. But I am honest. Leave me alone in the bubble and I won't have to hurt you.

Turns out that not only do I have scoliosis with the herrington rods I've somehow wound up with Fibromyalgia. And chronic fatigue. The list goes on. I am sure if you follow this blog you'll hear all about it. LOL! Being diagnosed with Fibromyalgia was a shock. I'd never heard of it. Now I hear it all the time. I wish I understood the syndrome better. I can attest that it is real. And it affects everything. Its the most random illness I've ever heard of. No wonder its laughed at and not believable to those that don't have it. I'd have scoffed too. But the joke is on me ladies and gentlemen. And I am determined to have the last laugh. It might sidetrack me, but no way will I let it keep me down. Not for long anyway! I've got a family. A son that is my world. The pain will just have to keep pace. I say that. But in real life it does control me more than I'd like it too. So not fair to my kid and husband. Some days I manage it better than others. Thats all I can hope for. Keep the dragon lady to little puffs of smoke. So thats it for today. Just a bit more rambling. Pain today is at a 3 and heading to a 4 in a hurry. So I must go stretch and try to hamper it. Good night ya'll.

Fusion

Fast forward to August 31st 1997. I am carefully painting my toes for the last time. In a 'normal' way at least. This sounds ridiculous to those that haven't been limited by bracing or fusion, I know. But bear with me here for a second. I wore that brace for 23 hours a day for 4 years and then transitioned out of it. Had what 2-3 years of freedom only to be told it didn't work? Talk about crushing! Anger. Sadness. I ran a whole heap of emotions that day when I was told my spine kept moving. Seemed like it was all for nothing. Then the doctor tells mom and I that my torso is twisting. It was going to hamper my breathing further. Cut into my lungs. What did we know? The doctor knows best right? I had no internet to refer to. I didn't have other cases to follow up on or ask questions. We did what he said must be done.

So back to painting my toes. I do this (1) to steady my nerves. I am scared of tomorrows surgery. And (2) the act of being able to bend and still paint them was huge. I can't really explain it. But knowing I would no longer be able to do it that way was significant to me. But after a few minutes the radio announces that Princess Di has been killed in a car accident. What does this have to do with anything? I don't really know. But it made everything a bit easier. I still had life. It was just a surgery. Kind of put things in perspective I guess. And it was her funeral and every other story about her that I watched from my hospital bed that week. So if you ask me when I had my surgery my answer is always "when did Princess Dianna die?" 

I begged, begged, and begged my doctor not to staple me. I was so scared of staples. So he stitched me up and taped me. Dear lord! I still cringe and want to cry remembering my grandma having to peel that tape off a week or so later. She was the only one that had the patience and did it gently. Everyone else was trying the 'bandaid' method. If ever you are in the same position, do NOT tear them off. It is NOT the better way. Trust me.

They had me up and walking the very next morning. I will not lie to you. It wasn't the easist thing to do. But I did it. Pushing myself to walk farther than they said so I could get out of there and go home. The nurses were horrid. One night the damn lady pushed the wrong button and I literally slid out of bed. I cry at that memory. That was alot to endure. But you do. You endure. You have no choice not to. They will pull the drainage tubes out. It feels like you are being stabbed and then a hot rush of fluid. I think I had two tubes. If there were more, I blocked it out. The only good thing I can tell you about that is that its over quickly.

My surgeon was good. The herrington rods he installed are still 'in there.' Thats what I'm always told anyways. But the thing about this guy is that he has no bedside manner. No after care at all. Its in there and you are on your merry way. Which is bullshit. Its like if you have issues, he doesn't want to hear about it because he takes it that his operation was sub par or something. Over the years it has driven me to really not like this man. Yes he's talented. Yes I'd go thru back surgery with him again because he is good. But now I know I cannot count on him for after care. And I won't get the whole truth from him either. The thing I find the most horrifying and unforgivable is there was no warning of the future. Nothing about the future good or bad. I just 'assumed' that the surgery would be a good thing. Breathing is a good thing right? Its not like I had a choice. With my curvature it would have had to have been done. But could I have stalled by a year or two? I will never know. And thats why I am starting this blog now. To tell my tale. So you don't travel necessarily down the same road I did. Or if you are, you have a friend to help guide you, grab your hand, pull you along.

Why now? Because I'm ready. Like I said before, the internet wasn't available to me then. And where I had issues over the years, it hasn't been like it is now. NOW is the time that you need to hear my story. To follow my path. You might not have the same journey ahead of you. But you might pick up some tools that are useful to you along the way. This is the future he never told me about. Maybe it was just too new of a procedure and he didn't know. But I'll be honest with you. I am living it. And I can tell you this-- Be kind to your body after surgery. Not that I did anything super horrible. But I also didn't have it pointed out to me that whats above and below the rods works twice as hard and takes the brunt of it all now that you are fused. Maybe I should have known that. But I didn't. I thought I had the miracle fix and was good to go, relatively speaking.

So I will leave you with that today. If you have a fusion surgery, take extra special care of your body. Know that the othe parts of your body are taking on the work of what was fused. Now is not the time to try bungee jumping :) If you are going to do that, do that before your fused. Just sayin'.

Getting Braced

As with most adolescents the scoli story starts with that test they do at school. Bend over and touch your toes. Move on to the next. Only I didn't get to move on. It was more bending over and touching my toes as more and more people came to look at my spine. Little tingles in my belly began but I soon was better when I got to 'move on' to the next health station. But by the end of the day I had a note for my mom to come in to the health office the next day. That was just the start of it. From then on it was doctor appointments, xrays, etc. If your here, you most likely have gone thru it and know exactly what I am talking about.

Then the day you finally get that damn brace you were fitted for. Say goodbye to the life you had. Its over. Everything is different. In that one moment, it all changed for me. This tight yet bulky hunk of plastic took so much. Unless you've been in one, don't judge. And yes, I know people have it worse. But when you are going thru it, it IS the worst. Petty thoughts but they are honest. Hadn't even exited the office when my mom points out the lady that has the brace where it goes up in a ring and they have screws in her head. It could be worse I am reminded. I know. I know. But it was plenty bad as it was. Go out to the car and try hard to hold back the tears. Mom not saying anything either because she's trying to keep it together. BAM! Fudge! Just smacked the crap out of my head getting in the car. Yeah dumbass, you can't bend remember? Augh. That took some getting used to. And to be honest, I still smack my head from time to time.

Got home and my mom left immediately. Little did I know how hard it was for HER to hold it together. Absorbed in my own nightmare I completely lost it. Took off the brace and literally threw it across the room and into the tv. So unlike the timid, shy, quiet, good girl that I was. Cry, scream, lashing out. I was lost, mad, and confused. How could this be? Why me? And all that jazz. Shit. Mom was coming home. How in the heck was I suppose to get that damn thing back on? Oops. Didn't think about that one. :)

Like I said. Everything changed. Clothes no longer fit. A whole wardrobe needed to be purchased to fit over the brace. We didn't have a lot of money and so I got off brand whatevers that fit. Which added to the horror of having a brace. At that horrible age where appearance matters, I was the ugly ill dressed kid. I expected to be laughed at and made fun of. And I did. A bit. But I lived through it. I had some good friends. Thank you God for that.

Other changes that were obvious right away were change in diet. I couldn't even eat an apple without being stuffed and sore. The brace binding me so tight. Even my breathing was different. And sleeping on my stomach? Over! I can't even tell you how clumsy I became. My balance completely thrown off. Thankfully the brace covered my hips because I constantly ran into corners or edges of things. Graceful I was not. PE was killer. I had the teacher from hell itself. Situps, running the mile, the burns and bruises I got was pure torture. I do not remember that teacher fondly. If you have someone in your life wearing a brace, give them a break. The road they are traveling is not an easy one.

That's a good intro to how getting a brace for the first time goes, right? Next post will be about surgery. Just a few quick stories to bring you to the here and now.