"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.

A month goes by....

And here we are July almost in the record books, and still I cope with the changes of my life. While things improve, things stay the same and things become less bearable.

Five months of having a disease with a name, less then that since Worker's Compensation agreed I have the disease, but the beautiful thing is they agree, and therefore we move on. I am able to move around most days with out my cane, but my foots swells so, I'm able to wear little else but flip flops. I am proud to say that my stubbornness keeps me mobile. Funny how my stubbornness and vanity is a good thing when it comes to Reflex Sympathetic Dystrophy.

I often think even if no one reads this, it doesn't matter because it's therapeutic for me to put this out here. I have new medication that is slowly allowing me to attempt to reclaim my lost half a life...however, it gives me a false sense of wellness that I pay for at a later date. I am able to function at a higher degree then I was, i.e. I am not lethargic and catatonic on the living room couch anymore. I am able to get out to my therapy and doctor appointments and on good days accomplish a few errands before my body tells me enough is enough. My knee is giving out less and less, as my foot swells more and more, give a little to get a little. As I said things improve, get worse and remain the same.

I never thought not working would affect me as much as it does, I have grown depressed from the inability to work, and I wonder when I may be able to return to the workforce, but know in heart of hearts that I would now become that employee that calls in sick frequently, only because my disease is so unpredictable from one day to the other, one minute from the other, one activity to the other. How pitiful it is to go from the "Go To It Girl" to having to force myself to leave my bed in the morning in fear that if I don't it may not get another chance to leave it at all. Maybe I should call this one "Don't Cry For Me Argentina"... or "Poor, Poor Pitiful Me".

Alas, there you have it, I have done a lot this month, and paid for every single bit of physically. How when we are healthy we take for granted going on a family vacation. I can't survive for 30 minutes in a vehicle without pain, let alone the four hour stretches we took on our travels with our boyos this July. We did manage a vacation that was full of memories for our boys, but I paid for it, with a long recoup period, and frequent use of my TENS unit and pain medications got me through the trip. That will be the last road trip for this family. I couldn't even share the driving with my husband because I can not drive more then a half hour a day. Driving restrictions are tough, and even worse is trying to drive at night when you have become out of practice. Roads can become a scary place.

And there we are...another day/week/month in the life of me.

"Don't wait for answers, Just take your chances, Don't ask me why" ~ Billy Joel

The last two weeks have been uneventful, yet not all at the same time. I'm not sure how that's possible, but let me explain so it makes sense.

My husband took me to a Rock Concert, it was awesome, however, my foot flared up from a very short walk and a couple of stairs.

I'm trying to adjust to life a disabled person, physical therapy is at a stand still, I've had to go back onto my crutches, noted an increased inability to maneuver on my left limb.

I cried when I went to price out the rental on a wheel chair to go on vacation with my family. I realized that I am disabled, differently abled, special..etc. but do not like it, because I feel I am admitting to myself that I will never again run. I have for the past few months held tightly to the hope that if I have my lumbar blocks that I would return to the pain free mobile woman that I use to be. Now I have to figure that I am not, and won't.

I'm trying to adjust to this, figure out what makes me flare up and what doesn't, but it's never the same. The inability to walk heel to toe, and well..it's kind of crazy what can happen to a person with RSD in 14 days.

With my husband to help me with groceries, I realized that if it wasn't for PT appointments I would not have to leave my house, and that's scary thought. How easy it is for a person to become a shut in, and look forward to the visits from the Jehovah's Witnesses and who all else comes door to door.

I have been having conversions with God, asking for signs and receiving them. I've been reading, lots of reading, and wondering..exploring possibilities and ideas for the rest of my life.

I've considered taking up sewing, as that I find it hard to find clothes I like and don't want to wear pj pants all the time.

Sometimes I feel I am without a purpose, though I have three sons, without a job to get up for every morning, and some place to be, I wonder sometimes why I get up in the morning.

So, I take it day by day and sometimes hour by hour, but sometimes that can be a hard thing to do. I try to do something normal, like go to a concert, and I spend the next day in bed. I try to go on a field trip with one of my boys and spend the next day unable to put weight on my foot or get out of bed. Violently sick, trying to figure out how I'm going to get to the bathroom to vomit without putting weight on my foot to get there. So it's hard to tell what's going to happen. Like I've said before, when I try to be normal, try to do normal things, I always pay for it with horrible pain afterwards, and it's not fair. It's the burden I've been given but I don't have to like it, I just have to figure out a way to deal with it.

So, as I'm dealing with it, I'm know that I'm too stubborn to ask for help some days, and sometimes I wonder why more people don't ask to help, though I'm not sure if I would take them up on the offer...

There it is two weeks in the life of a person with RSD....trying to deal.

Red Tape & The Unwelcomed

Red Tape....the request for services going to Kentucky to go to Boston to approve...Why is there always a middle man? Shouldn't we streamline, our tax dollars at works...

So why I wait for my Doctor to submit a claim for my Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome with the appropriate ICND 9 Code, on the proper form and fax it to the proper office, so I can get my MRI done on my leg to figure out how much of it actually affected by the RSD, the pain is no longer localized to the knee to toe that I was first diagnosed with...OH no!

Let us stall, and wait "no more lumbar blocks for you", for the First one, my Pain Management (PM) Specialist was on the phone screaming and threatening to report them to someone somewhere for something bad...I'm not sure, but she got the first one to be approved. When it didn't take, when it didn't do what she wanted it to, she came up with a new plan of attack. We were going at it more aggressively to confuse my system, to allow my central nervous system (CNS) to remind my brain what it was like to be pain free, we were going to double tap it (two days of lumbar blocks back to back) and wait a week and double tap it again... so while we wait for the first one to happen, while we wait for the next round to occur the pain is spreading up my thigh into my lower back, and the pain knows no end. I haven't seen my PM in month, I'm living on Neurontin, Amitriptyline, and Tramadol. And while I don't want to get into my "drug habit" so to speak, you must understand, because it speaks volumes of how the body adapts to the medications and they no longer become effective.

The Neurontin makes me what I've come to affectionately call a "Loop Head", my Amitriptyline reads "Take 1 or 2 Tablets at bedtime as needed for Insomnia/Pain" at first one would be enough to knock me out, and I was finally able to sleep. Unfortunately, 1 would not be enough into the second week of pain and not being to sleep without it, and believe me I tried, so I went up to the authorized 2 but it stopped working too, and so I'd take some Tramadol and try to go back to sleep. Now, it's sad to say but neither the Tramadol or the Amitriptyline help with the insomnia or the pain.

I'm not a drug seeker, let's get that straight away, I have three boys, and do not want to spend my days high on narcotics so I miss their daily lives. I only take my medications at bedtime, to sleep, because I need it to function as a parent. So know I'm juggling pain, a pain greater then child birth, with no assistance, and no cure in sight, trying to be the best mom that I can be, and my one glimmer of hope that I have, that I'm trying to hold on to is being bogged down by red tape, and I'm getting the "Unwelcomed" spreading of this monster up into my back!

Am I Admitting Defeat?

Disabled...
I'm not sure if I'm angry at the word or what images it invokes for me. I have spent 2 months fighting this word. And then yesterday, the thread that I was hanging by the keep me from admitting my defeat, admitting that I am disabled, broke and I cried. Tears rolling down my face as I told my wonderful husband that I can no longer do it all, I am no longer Super Woman, and my kryptonite is RSD.
I always thought that if I got everything right I would be able to return to normal, to the person I was before this diagnosis. I was injured in August 2008, and I clung to the hope that I would get fixed and get better. I now know that I will not, and it's painful to say that, because RSD will not allow me to get better. I'm always going to have balance my activities so as to not cause a flare up, nurse myself, be gentle with myself. It frustrates me, and insults me at the same time.
As I journey through this new half of my life, I need to tell you the small changes that come. First it's noticing that you can't wear just any shoe, because you're foot swells as you walk on it, and if there isn't any room in the shoe then it rubs causing blisters and ulcers on the foot. The next thing I noted is that I couldn't just wear anything, jeans felt so heavy on me. It's not an every day thing, on good days I can still wear jeans, but on bad days it's just too painful. So I adjusted, buying sweat pants, lounge pants and other light cotton pants that wouldn't rub and cause pain. Then it's not being to walk for a long time, frequent breaks are required, my cane is needed, and finally I admitted I need a wheelchair to really be able to get out and do things.
Most of the time I'm house bound, I can't drive more then 15 minutes without pain. Luckily I drive an automatic, because I wouldn't be able to work a clutch. My left foot is constantly in pain, it can vary from a numbing burning pain to a sharp stabbing pain. The RSD has spread from my toes and knees up to my hip. I can barely lay on my left side on a good day, and forget about a bad day. On a good day I can be seen walking to and from my son's school with out my cane as I pick him up from Kindergarten. I can not walk the less then ½ a mile from our house to school though, because that would cause a serious flare up and turn a good day into a bad day.
Here I am again waffling into acceptance.... I'm disabled, but I don't want to be disabled. Who wants to be right. My wonderful group of sisters I have found through facebook tell me I am “re-abled” or “differently abled”, but I still found myself labeling myself as disabled, because I can't do what I use to do, and I can't be who I use to be. I am feeling like saying I am disabled is admitting defeat.
Some days I feel defeated.....

Hoping & Coping with RSD

Coping & Hoping...hmm.. that's where we are at today.

I feel like I'm in mourning, kind of like the way I felt when I lost my Gramp so many years ago. So I look at The Five Stages of Grief. Denial, Anger, Bargaining, Depression and Acceptance.
As my Therapist told me, I was mourning my former life, the loss of my normalcy, the loss of my job, the loss of being in control. I know she's right, I know this what I feel, the loss of being able to move. It's as simple as that. The freedom to move my body and not have pain. I can not walk heel to toe on my left foot, I have extreme sharp and stabbing pain every time I move. When I'm sitting I have an achy pain that goes from my hip to my toes. The burning pain like having your foot too close to the fire or even on fire that licks up my foot into my shin and calf slowly up to my knee.

The McGill Pain Scale goes from 1-50, RSD sits at about 42, amputation of a digit is 40, child birth is a 32. There are some days when I feel like I can manage the pain, those are the days I tell everyone I'm doing okay, and I hear things like “You look good” or “Glad to see your better”, but that's when I start to get depressed, because I know I'm not going to “get better” there is no cure, I'm going to get where I can manage this monster, where I can figure out what works for me, and only me, because that's how this disease works.

Coping also includes how the bills get paid, and this causes the stress level to go up add that to the burning stabbing pain I'm feeling and there are days I don't want to crawl out of bed, everyday I do though, even if it's just to move to the couch where I sit most of the day and feel pain.

Feeling useless, broken and hurting. I don't know if that makes sense, but that's how the days are.

I didn't go through denial, I was glad to know that what I had, what I was feeling had a name. I am angry, I don't bargain, but I feel some serious depression, and I waffle into acceptance at times.

Now all I have is hope, hoping that I can manage this pain, this monster of a disease...Hoping & Coping makes up my day.

"The Day The Music Died...." ~ Don McLean

I wasn't driving my Chevy to the levy, but it was like a life altering moment.
The day my Doctor told me I had RSD, I didn't even know what it was. I had never heard of it, and yet that acronym would have such an impact on my life..one I'm still trying to figure out.

Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) the two are interchangeable, they are the same disease. RSD became CRPS, it's such a squirrelly disease, had to pin down. The effects I have can be totally different from another person suffering the disease, but we all, as I have some to realize have one thing in common, the constant chronic pain.

RSD can be caused from something as simple as a bump, a fall, it doesn't take much, but once you have it, it alters your existence. I started this journey with a dislocated knee, and a surgery to clean up scar tissue that had formed around my knee. My hopes were to get my knee back to 100%, return to work full time, and be able to run, hike, bike, play with my kids, get dressed with out the pain. The day I found out I had RSD that dream slowly began to fall apart.

First came the realization that my knee was as good as it was going to get. I would have to figure out how to do the things I wanted to do with it as it, that is if I could get past the pain I felt to do those things.

Secondly, my dream of returning to work crashed down when I was placed on long term disability and had to "mourn" the loss of my job

I wasn't just mourning the loss of my job, I was mourning the loss of my lovely normal life. I shouldn't miss it though, it had already been eight months since I had been "normal", but I was mourning the dream of returning to normalcy.

I was given medication, and no hope for a cure. A hope of remission if..and a hope for some sort of maybe a kind of normal, but nobody could tell me what that normal would be.

That's possibly the hardest thing about RSD, it's day by day, hour by hour, moment to moment. I may feel good enough to walk without my cane, but then I may need a wheel chair. I might try to walk the mall for a few hours, and the next day not be able to leave my bed. Sleep like the dead for a day and a half and not sleep at all for two... I never know, I can't make plans except to go to the Doctors and physical therapy. The constants in my life.

I rail at myself for being broken, and I feel broken physically, mentally, and emotionally, as I try to live with chronic pain...
Day number~ 61 days since diagnosed