"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!