"Secrets stolen from deep in side, the drum beats out of time" ~Time After Time Cindy Lauper

It has been a long time since I took the time to visit my blog, and chat about what's going on with me.
I feel pretty good lately, I still have my bad days, the barometric pressure wreck havoc upon the limbs.  Luckily, my CRPS/RSD is pretty localized to the left foot, leg and left side of my lower back.
My meds have changed as well, I've had my methadone increased, and the percocet and flexeril only get me through the rough spots.  I've gotten back into the work force through Vocational Rehabilitation, and I've been working as a paraprofessional in a local Middle School.  I love the job, I love helping children. I've even become the softball coach this year, though I don't run, but I can still guide the girls from the side lines.  I enjoy being back in the world.

I wonder if what happens to us is that we often get diagnosed with this disease and think that it is a death sentence for us, and we no longer live, dwelling in the pain and agony of our conditions, we confine ourselves to our beds and our couches.  Our bodies shutting down, becoming more painful, more tender, more burning.
My husband suffers from a chronic back condition, and he always does, keeps on doing, and he has made me the same, and so when i could stay, sit, sleep instead I clean, move and tend.  Thus my body suffers, but moves.  As most Doctors tell you, moving is the best thing you can do, but sometimes, and I still have those days, sometimes I just can't move.  I can't tend, I can't do, and those days I am supported, and I recognize the burn and sensitivity that is CRPS.

In the end we all experience this monster in a different way.  My way is not your way, and  I respect that, just as I ask that you all respect my experience with CRPS/RSD.

Hold On For One More Day~ Wilson Philips

"I know that there is pain, but you hold on for one more day and you break free from the chains" ~Wilson Philips

I haven't been here for  while, I've been busy trying to start a small business I'm so stubborn that I refuse to be allowed to be disabled.  I'm only 35, I can sit home and do nothing, so I make myself do things. I have a great little yarn shop and the great thing about it it, I have a couch i can sit on while I wait for customers and allow myself to take the breaks and get the rest I need while still doing something to contribute to society.  If I can't make it to work that day I have two options 1) Close the shop for the day or 2) Get my Mother-in-Law or my Dad to go sit on the shop.  I thank the Goddess for my family every day to help me in my endeavor.  Most weeks I can make the 4 of 5 days of work, but I always end up having to spend at least one whole day in bed when the week is over.

My Doc is talking about Ketamine Infusion, I'm hoping it gets approved and I can do it, it would be nice if it works, and gives me the normalcy that so many have had since they started having K-infusions.  I understand I would need boosters, etc. but I really think it will be helpful.

The pain has gotten so bad lately, that it's spread up my leg, into my back, and my left arm, the bicep is in a constant aching pain, luckily it hasn't totally effected my hand, but at night I will wake up with pain in my hand and fingers.  I need my hands to knit! 

So dear Reader, I promise this to you, 1) to be better about posting (I won't wait 6 months to get with you)
2) I promise to check in at least 2 times a month, and we'll cover my daily life, CRPS life on FB, and Treatments, etc. :)  Look forward to more of me....and "Hold On for One More Day!"

"Survivor" ~ Destiny's Child

"I'm a survivor, I'm not gonna give up,  I'm not gon' stop, I'm gonna work harder, I'm a survivor,
I'm gonna make it, I will survive, Keep on survivin', I'm a survivor, I'm not gonna give up, 
I'm not gon' stop, I'm gonna work harder, I'm a survivor, I'm gonna make it, I will survive,
Keep on survivin'."

I sit here surrounded by sheets of paper and balls of yarn.  Scribbled algebraic symbols and problems all over different slips of paper as I try to move my way through Algebra. The mind of Mrs. Suzie Kelleher didn't understand Algebra when she was Ms. Suzie Messier and in High School trying to figure it out the first go round, she sure the heck isn't getting it was what we call "RSD Brain".  The yarns from Cascade Yarns, Manos del Uruguay, Colinette's and sample of other yarns surround me as I try to decide which yarns will going my shop for the Grand Opening, and which ones I will purchase later as begin to build my inventory for my yarn & bead shop.  Knitting needles and crochet hooks peek out from "TO-DO" lists and reminders of all kinds.

Yes I have RSD, but what is it someone said "it doesn't have me".  I went down the dark horrible road of depression, where I thought I wouldn't see the day when I could play with my children, not that I'm there yet, but at one point I could hardly walk, today with my special drug cocktail my pain is lower, most days it's a steady 2-3 and when it spikes I have meds for that and I stay in bed and it goes down to where I can function again.  I haven't done Ketamine, and I'm not qualified to discuss meds with anyone, but for me, what has worked for me, is my meds, physical therapy and massage therapy.  That's right massage therapy  having someone touch my leg, making me reassociate with my limb.  It's there, it's part of me, and it hasn't made the pain go away totally, but it has become bearable.

My foot is still cold, it still swells, it still turns purple, I've still gone up a shoe size, still prefer to wear loose pants because of the tightness of different fabrics on my leg makes me feel like I'm "suffocating".  I still wear thick heavy socks, I still favor my good side to my bad side, but yet, I'm able to walk better now.

I'm not cured, I'm just surviving.  Day to Day, that's all we can do when we have this horrible disease.  So I'm going to be a business owner. You're all probably thinking, "How the hell are you going to do that?" and I say to you "Family".  If I have a bad day, and I just can't get there and do it, I have family who can and will do it for me.  Their help is going to enable me to fulfill a dream, of going back to work, and being useful. I will have a purpose once again.  I will continue to survive one day at a time.

"Ain't Nothing Gonna Slow Me Down" ~ Men At Work

The song of the night is “Ain’t Nothing Gonna Hold Me Down” by Men At Work.

I just got back from Dartmouth Hitchcock Medical Center in Lebanon, NH, a long trip from the Northwest parts of Vermont. So there I was, being poked and prodded like a science experiment by yet another doctor, and was told yet again that I have Complex Regional Pain Syndrome Type I, Reflex Sympathetic Dystrophy.

“Ain’t nothing gonna break my stride. Nobody’s going to slow me down, oh, no, I’ve got to keep on moving.”

And then I learned that though I may believe that Doctor’s tossed prescriptions at me, there was in fact a reason for such behavior, and that is because the number one method to treat CRPS is with Pharmacology and physical therapy. Trying in fact to find the perfect recipe for that patient to find their “cocktail” that will provide pain relief. We are still searching for my “cocktail”. And here I thought I was always a Mojito girl, turns out I could be a Bloody Mary girl or even a Martini girl. I knew already I was a Wii girl, my body feels the pain from the Wii exercises, but my swelling goes down.

“Ain’t nothing gonna break my stride. Nobody’s gonna slow me down, oh no, I’ve got to keep on moving.”

So my symptoms were analyzed today, I felt very comfortable with my Doctor, don’t misconstrue that statement, I feel very comfortable with my local Doctors, but it took a bit of time to get there with some and not with others. I had an immediate sense of positive vibes from this Doctor, and an immediate sense that he knew what he was he was doing, he knew CRPS. Thusly, I now know that I shouldn’t expect that just because I don’t have allodynia (sensitivity to touch or clothing), but I do have hyperalgesia (severe pain when only slight pain would be expected). I have swelling, mottled skin, skin temperature change, and pretty shiny skin too. We won’t get into the pain in moving the body part, the mood swings, and of course the sleeping issues. I know to stick to treatment plan, I know what I have to do, and so….

“Ain’t nothing gonna break my stride. Nobody’s gonna slow me down, oh no, I’ve got to keep on moving.”

So what's the next stepyou ask? The nex step is to stay on the Pharmacology program,and see how respond. Continue with my physica therapy program, continue with my craniosacal therapy, take up mirror box therapy, and let nothing break my stride or slow me down...

"I got to keep on moving"

"Say it if it's worth saving me" ~ Nickelback

I haven't blogged in awhile, I've been working on quite a bit. I just completed a short story that was entered into a competition through Good House Keeping.
I'm currently working on a novel with my friend Juli Manz.

Since I made my last post, much has happened, things of course are under constant change for people with CRPS.

So, the month of September was spend in a good deal of pain, trying craniosacral therapy to lessen it, and other holistic measures. http://www.craniosacraltherapy.org/Whatis.htm
Building up my medical team. I'm lucky to have a great Doctor that knows what RSD is about, and that here is no cure. He's goo to me, and willing to try these holistic measures to see what will give me relief. I've been doing craniosacral for about four weeks now. I notice a difference after I get the treatment, I'm more mobile, like I am in the summer, able to move easier, keep up with my kids while walking in the grocery store. I no longer rely on my cane, and I'm happier about that. It's a very gentle manipulation of my limbs, even the infected one, but it's like being able to stretch it after so long. It's a tingly release that feels good, and leaves me feeling good for about 5-6 days.

I go to PT twice a week, for measurements of my swelling, gentle balance exercises and a gentle massage. It helps with the swelling and keeping my foot from blowing up large and purple.

The chest pains I felt after the last epidural have not eased. It's believed that I have costrochondritis, an apparent inflammation of the cartilage in between my ribs. Well it's going on 8 weeks with this pain, and and nothing seems to be making it better. Then three weeks ago I started to note this pain in my triceps of my left arm, and them it started to spread down the arm,down into the elbow,and into the forearm and the finger. I noticed that it was getting harder to type, to grasp thing, or hold them for a long period of time. I called my doc, an now I have an MRI scheduled on my neck and lower back. A possible pinched nerve, a possible RSD spread, do we know hell no, not yet.

This is the stuff that makes a person so frustrated, and that's when I started to think about this song by Nickelback which brings us to the title of this post...

"Prison gates won't open up for me" Sometimes this disease feels like a prison. I'm trying to break out of, I know there is "no cure" and yet still I don't want to believe. I think maybe if I take more vitamin C and I do mirror box therapy I'll be cured. I can't give up hope, it's all I have. For me the "you" in this song that I'm reaching for, that I'm calling for is a cure.

Apparently an episode of House has both my Physical Therapist and ND have both decided that mirror therapy is the perfect cure or me so look at this http://www.youtube.com/watch?v=Pe8Y3YETnuY from youtube. My 5 year old and I looked at it, and he said to me, "You're not going to fall for that are you Mom?" I don't know if I'm going to fall for that son, but maybe my mind will. The possibilities that are now coming at me in abundance are scary. None of them are a get better quick scheme, 4 rounds of magnesium through an IV, 4 rounds of Ketamine, 12 weeks later you have the same results, or so the studies say. My ND says Magnesium, my PT says Ketamine, my Doctor has yet to weigh in.

The four walls I'm terrified of, are permanent disability. I'd rather collect my retirement and be able to work. I'm hoping once I get the pain under control that I can go back to living a normal life, I know I may be hoping against hope, but again it' all I have, it's all I'm reaching for. I want o go back to work. I want to play with my boys, and dance.

I head to the neighboring state later this week to their pain clinic to find out what they can do for me, I'd to Boston or NYC if they could give me some relief an return to normalcy.

I'm invoking my warrior spirit, and saying to Hope and Cure, "I'm calling, come please I'm calling"

"You Had a Bad Day" ~ Daniel Powter

"Where is the moment we needed the most" ~ For me this would have been an awesomely working epidural/lumbar block today that actually took the pain away completely, instead of just numbed it and everything from my belly button down. It was definitely not what my PM wanted it to me, and she doubled it to get some sort of a result because I wasn't responding for the first round....crazy maybe, but I was there anyway..so might as well try to knock it out. It so didn't knock anything out except me. Even though my legs don't work I must of kicked up the leave and lost the magic there.

"You stand in the line just to hit a new low, you're faking a smile with the coffee you go"
This sounds like I need to discuss the deep depression I fell into, it's apparently part of the RSD thing, I kept meaning to call my Doc, per my sweet friends request, but I forget, because that's another wonderful about RSD, and so I haven't done it yet, but it's in my notes of things to do, if I remember to look at them..I know ARGH!

Today in the hospital I had a nurse grab onto my feet to check my strength, problem is I may not have extreme allodynia but still you don't grab the foot of someone who has RSD, and I told her, and she seemed to not really know what the hell it was. I was too exhausted to explain. I did ask her to be very careful with my left limb, that it hurt with not even much pressure. Then there was all the whispering about RSD, the Nurses asking me what my epidural was suppose to do for RSD. I wish that there would be more training for health care professionals in this area...."So you had a bad day...."

Ever notice the chorus of this song makes it seems like the guys telling her, "Yeah what ever you had a bad day, suck it up, I don't want listen to you carry on about it" I feel like things are like that in my house at times. Not all the time,don't get me wrong, I know my hubs loves me, totally loves me, I just don't think he understands what I'm going through and comparatively to his back and neck pain with his damaged discs he figures if he can cope I should be able to cope to, maybe he doesn't feel that way really, maybe I just think he feels that way, often times we don't really talk about how he feels, We seem to rely to heavily on my empathetic abilities.

I'm not sure what a blue sky holiday is, but as long as it doesn't belong having to make a decision between a sympathectomy and a Spinal Cord Stimulator, yay, I don't want that so much. It seems like there's n good choices for this rotten disease. My head is spinning...
Neurological Associations Four F's Diet
Chiropractic or Acupuncture
Lidocain Infusion
Topical Capsaicin or Fentanyl Patches
Hyperbaric Oxygen Chambers
Ketamine Infusions
really the SCS and the Sympatheticomy is my last choice.....
My Aunt has an SCS for her arm RSD, it doesn't help her, it has a 50-70% chance of a better quality of life. Sympatheticomy has a 30-40% chance of working...I don't know it scares me.

So I had a bad day..I can't work up a smile..I'm not allowed to go for a drive unless it's only 30 minutes and with this latest med, I really just can't...and so...where is the magic when I need it the most?

I hate RSD. I hate what it has taken from me (My job, My ability to play with my beys, over 20 pairs of cute shoes, the ability to be the Dancing Queen, the ability to wear a pair of jeans, running, walking, a foot that's not so cold and is a normal size and color...the list goes on)
I hate that makes me rely on my 7 year old son to take Care of me, bring me sweet tea and medicines, sometimes even feminine products...ARGH! It's embarrassing, but I say Thanks you, I'm trying not to be just the giver, it may be that I have this to force me to learn the lesson of being a taker...I'm a horrible taker.

So I had back to PM on 9 September for the final round of lumbar blocks...and then referral to Dartmouth Hitchcock Medical Center in New Hampshire...

I continue to suffer the set backs of this horrible disease that was proven to me that the Medical Community needs to learn more about....I'm printing flyer's to take with me next time.

'Hello Darkness My Old Friend" ~ Simon & Garfunkel

Depression. Apparently this disease not only robs you of your limbs, and abilities but comes in and steals your joie de vivre, joy of everything, joy of life. I find myself sinking in the deep darkness of depression, I've been here before I know what it looks like, but this time it is because I fail to have a purpose, a reason to leave the rack in the morning. I have lost my joy of living. How joyful can living be when your limb ache from your toes to your hip. How joyful is it to put on the mask to pretend to be happy.
Is it wrong to want people to tell you that you look better, so you can make yourself believe that you are getting better, when you won't not really because there is no cure for your illness, your sickness, your disease....

And then I push everyone away, cloister into my house, cocoon myself in, and I will emerge the beautiful butterfly eventually, the happy go lucky girl I am suppose to be, expected to, the one that stick s with it, and doesn't let anything get her down...but she must wait, it's not her turn yet.

I still struggle to understand what this disease means to the rest of my life.....I'm trying to deal.