Alot has happened-

I had my wisdom teeth removed just before the holidays, believing it was the cause of my discomfort in my left ear.  Well, now that everything has healed, and I have been on anti-biotics for almost 2 weeks, I think we can can safely rule out any infection. (I have also confirmed this with my GP).  It is a mystery to me, because the pain is crippling.  But it also seems to coincide with my flare ups.
I do have an appointment in Boston this week!  What I thought might take 5 to 6 months will be happening before the end of the week.  I may finally know why I have pain, muscle spasms, parasthesia, mood swings, memory loss, and all the other nasty stuff that has happened to me over the pass few years within a matter of days.  It seems to good to be true...
I had to pick up a copy of all of my tests done over the course of the year.  I snuck a peek at my MRIs and X-Rays... I'm no doctor, but I thought I only had one white spot on my brain (I have Mesial Temporal Sclerosis)?  There looked to be at least eight...  I'm not going to freak out, but this makes me wonder if perhaps I have been diagnosed wrong?  My new doctor did say he thinks my pain is related to my central nervous system.  He wouldn't diagnose me because he is not a neurologist.  I just trust him more.
And it makes me all the more anxious to see this specialist in Boston.  He does specialize in both pain and neurology.  I'm excited and nervous all at once... and yet I don't want to get my hopes up too high- because I've been down that road before way too many times.

-Recovering-

This past Friday, I began to suffer from the worse case of vertigo I have ever experienced.  It felt as if I were walking on a boat, I was nauseous, and I couldn't focus on anything.  I went to the ER that night, where they gave me some anti-nausea medication, yet I still felt car sick for the next 3 days. 
Yesterday, I also had a terrible earache.  I went to my GP to rule out an ear infection.  He said I was showing no signs, other than a slightly red throat. I made a follow up for this coming Friday, in case things haven't improved, and went home. 
The pain has gotten worse, radiating from my jaw and ear.  It is a stabbing,throbbing pain, that gets worse when I move my jaw.  The only thing I could think that might make my face hurt like this, and also cause the vertigo I had been experiencing is either TMJ, or an impacted wisdom tooth.

I already know that my wisdom teeth on the bottom are impacted.  I never had them removed, because they weren't bothering me.  So I have made a dentist appointment in the up incoming days to see if that could be the culprit.  I think my only saving grace has been the pain medicine for my RSD.  I remember when my siblings wisdom teeth began to be a bother to them, and both of them had impacted teeth...  they were in agony.

For now, I'm just glad the vertigo has gone.  I could not get out of bed, or open my eyes it was so bad.  At least with the pain, I can some what function.  It's all a mater of thinking of shades of gray.

PLEASE READ and SIGN!

Online Petition

-Just When I think I can Relax-

So I remember the term the doctor use to describe the 'uncomfortable yucky feeling' I have on my side.  Paresthesia.  It burns, it's painful, and sometimes it is just plain old yucky.  People who have had experienced any type of anxiety have had felt some form of it... the feeling of the hair standing on end.

I have it constantly, ten times more severe... and much more painful.  I no longer wear denim, it hurts my skin. 

So I look up conditions that could cause paresthesia, and there are many- RSD, fibromyalgia, lupus, vitamin B deficiencies, anxiety, I could go on...  but I narrowed my search to 'one sided paresthesia', and I came up with this article:

A 48-year-old right-handed female patient with a right aortic arch and history of tetralogy of Fallot repair as a child presented with recent episodes of severe headaches that resolved and episodes of left-sided numbness. On examination, the patient had no neurologic deficit. MR imaging of the brain was performed, which demonstrated tortuous dilated vessels in the right perimesencephalic region and mass effect on the brain stem. Cerebral angiography demonstrated a right proximal PCA dolichoectasia of the P2 segment supplied by a patent P1 segment and posterior communicating artery (Fig 1). Other areas of milder dolichoectasia were present with mild enlargement and tortuosity involving the right intracranial internal carotid artery, basilar artery, and distal right anterior inferior cerebellar artery.

READ MORE HERE 

The one test I haven't had done (recently) is an MRI of my brain.  And this article is, in short, is saying that the patient had a problem with the vascular system in her brain.  The majority of what I have read about one sided paresthesia involves the vascular system in the brain.  That scares me a lot.  My little sister (she was 25 at the time) had a stroke.  The entire left side of her brain basically died.  

 

The other condition I have read about are transient ischemic attacks (TIA) or 'mini strokes'.  These are one third of the time warning strokes to a larger stroke.

Now, I could be blowing everything out of the water, and worrying over nothing...  But I called Boston, none the less, and made sure I let them know I was very concerned, and wanted to know if they had gotten my records yet.  The receptionst found them, and when I told her I was experiancing left sided paresthesia, told me she would mark it as 'Urgent', so I would be seen as soon as possible. 

I'm not sure if I feel any better...  But hopefully I will know what is going on soon.  Until then, I need to just find something to do to keep me relaxed, and pain free.  The more good days, the better.

Second Opinion

I finally had my exam with the second pain specialist.  This has been the most thorough exam since I've started this process.  The doctor ran his finger across my skin, and had the nurse mark where the uncomfortable and painful sensations started and stopped.  From head to toe, no area went unexamined.  There where parts of my body that were being effected that I wasn't even aware of.  My entire left side of the body has some form of pain and or discomfort.  Sometimes it burns so bad I can no longer wear jeans.  My intestines and muscles are also being effected.

This bring us to the next step in my journey.  I was born with a scar on the right side of my brain, on the temporal lobe- mesial temporal sclerosis.  It has been the cause of my epilepsy.    I also have a birth mark, or what is known as an hemangioma on my left side.  This has my doctor thinking- perhaps what is causing my pain is somehow connected to the scar in my brain.  So I need to make an appointment with a specialist in Boston.  One that treats both pain conditions and seizures.  This could take over 6 months to get an appointment.

Until then, my doctor has a plan.  He has spent his career treating cancer patients- and he is tired of poisoning people.  His goal is to treat my pain as effectively as possible with the least amount of medication.  He prescribed a medication he believes has less side affects, and we will be working with my psychiatrists and neurologists to lower the amount of medication I am taking.

I feel a great deal of relief...  I already had a good nights sleep, something that was seriously lacking for me for months, and a pain free day.   At the same time I have felt overwhelmed, inadequate, and lonely.  The pain came back today with advengence, and I just fell apart.  Pain is an emotional roller coaster, and it's taking me for one hell of a ride.

-Wearing Down-

When you live with pain, you learn to run on pure adrenaline to get you through the day... or at least that is how my body is coping.  I don't do a whole lot, most days.  I wake up, have breakfast with my family, take a nap, then get the few things I need to to get done for the day, whether it is running a couple errands, or just checking some messages on the computer. I also have my son to take care of, and as any parent knows, every toddler has there moment.  But I get through the day, and I'm sore, but still unable to sleep.
Today, I experienced something I very rarely feel these days.  Pure out of breath, barely able to move exhaustion.  Even after napping.  What changed?  I had company, and we ran an errand, and I also pushed myself a little but harder to keep up to her pace- taking her dogs out to play with them, chasing my son around. I sat down half as much I am used too. 
Then it hit me like a ton of bricks.  The adrenaline was gone, and  I was scared and sore... this wasn't a panic attack (I have had those).  This felt like I had run 20 miles while carrying 100lbs on my back.  The moment I sat down, I was done for. 
It has taken my 4 hours and some to start to feel some what normal.  I'm still exhausted.  I'm not tired, just fatigued.  It's days like this I wish I could show the doctor what was going on....  It's days like today that I can't stand the uncertainty. Is this the RSD... no.  Is it a result of chronic pain... I highly doubt it.  But for now, that is all I have.

-Guilty as Charged-

Today, I felt myself physically giving up.  No matter how hard I try to mentally push through the pain, sometimes my body just gives way to the physical signs of depression.
Since being diagnosed,I have had a terrible time with doctors, either over medicating, not listening, or not being available.  I had to switch doctors, and start the process all over again- and it took me over 7 years to get the first diagnoses because I was just living with the pain, and the doctors kept telling me it was all in my head.
Now I have a son, and I have a terrible time particapting in his life... The waiting and the pain are just exhausting.  I try so hard to keep my spirits up, but it's just getting harder every day.  There are no local support groups here, and I only have my mom and fiance as local support.
I've started just napping toget through the day...  which just makes me feel worse.

I have been depressed before and know the preventative measures to take:

• Make sure to eat at least three meals a day
• Try and get a good nights rest
• Limit naps
• Excersise
• Keep Social Company
• Use positive thinking

These are just the basic.  I've been going through the motions.  But it is just that- they're just motions.  I eat, whether I'm hungry or not.  I try and sleep, and stay on some kind of schedule.  I try and go without naps, if I think I can function (it's getting harder everyday).  Excersising- I have my limits, but I try to work around them.  Social company- I get out of the house when I can.  Positive thinking....   I have hope...  that is one I always will need to work on.

I just wish I knew why I felt like giving up more and more.  When I say give up, what I mean by that is, well many things.  I wish my family didn't have to take responsibility for me.  I want to just go somewhere where they could figure stuff out.  I hate the way I see my family worry about me.  I hate watching my son grow up and not being able to do more for him.  I know I do the best I can, but I want to do more. 

I guess this would be classified as the 'guilt' aspect...

-The Grieving Process-

grief [griːf]n

1. deep or intense sorrow or distress, esp at the death of someone

2. something that causes keen distress or suffering

3. Informal trouble or annoyance people were giving me grief for leaving ten minutes early

come to grief Informal to end unsuccessfully or disastrously

 From www.thefreedictionary.com

 It is safe to assume that when a person is diagnosed with or has been suffering with RSD for a period of time, eventually they will need to go through a period of grief.  And similar to that of the loss of a person, one with RSD will go through similar motions as they grieve the loss of what was once their lives, which has both physical and emotional effects.

I think, personally, it has been harder to grieve the loss of my abilities, going from a independent young woman, to someone who is bound to a recliner the majority of most days (not by will), than the loss of my father.  I would not want to go through either, by any means, and I know this is by far a difficult and all most gruesome comparison to make, but it is the best I am able to make, so please bare with me.

When I lost my father, he died of a heart attack suddenly.  It was unexpected, and he was young, in his early 50's.  I remember the shock.  The months of insomnia.  I couldn't eat for months.  I went through the motions of the day for almost 2 years.  Nothing felt real.  The crying came spontaneously. 
I'm also not much of a spiritual person, but I found myself talking to God.  Asking him why?  And looking for comfort in friends- yet as hard as they tried to console me, no one seemed to understand.
I also felt guilty.  I should have helped him.  He was having a heart attack in front of me, and I couldn't recognize the signs?  He had just certified me in CPR?

I find dealing with the 'diagnoses' of RSD coming to me in similar waves.  First it was a shock that this was now my life.  I just seem to be going through the motions.  The more I loss my ability to do what I 'used to do', like clean the house, or go out, the more I find myself grieving for myself.   I feel guilty that I may be burdening my family.

It's not exactly the same.  And I don't expect anyone to think it is.  But the idea that we are allowed to 'grieve', and let go every once and awhile, and cry.  I find that the hardest part.  I think I need to be this strong person, and not show anyone what I really am feeling, and then I just have this breakdown every few months where I just start crying, and I don't know why.

I write this, not for comfort.  I know I am still coming to peace with my feelings and emotions.  It will take time and a lot of work.  I still get 'waves' from the loss of my father.  I write this, in hopes that there are others out there that have similar emotions, and can get comfort in knowing they are not alone.

If you would like to read more about the Physical and Emotional Effects of Grief here are a few sites-
Physical and Emotional Effects of Grief 
Recover From Grief 
Coping with Grief And Loss
When Illness is Prolonged: Implications for Grief (Recommended)

-A Pain in the Butt-

I have had severe pain in my leg, buttocks and hip now since July.  I have had to jump through hops to get the doctor to take my complaint seriously.  I was sent to the emergency room on several occasions, treated as a drug addict, had to send a letter of grievance, and start the long process of getting a second opinion.
Today, 2 weeks after getting my EMG, I had to call their office to see if my pain management was even thinking of considering a follow-up appointment.  Come to find out he hasn't even gotten the results (I've already had them faxed to myself).

Well, after spending a half hour reading a little of the Gray's Anatomy, and 'Googling' some of my findings and symptoms, I think I am on the right path to finding an answer for the pain.

Piriformis Syndrome- a neuromuscular disorder that occurs when the sciatic nerve is compressed or otherwise irritated by the piriformis muscle causing pain, tingling and numbness in the buttocks and along the path of the sciatic nerve descending down the lower thigh and into the leg.

From Wikipedia, the free encyclopedia

Well, I'm not a doctor.  But I am assuming this makes sense, with all of the muscle spasms I have been having through out my body.  If my piriformis muscle has been spasmming like the rest of my muscles, it could possibly be the cause of my nerve pain.  To be certain, however, I will check with one of my doctors.
So when I called to make an appointment to have my EMG reviewed, I asked the receptionist to note down my 'theory' so the doctor could see if such findings were in my test.

If I'm wrong, I'm no worse off than I was yesterday.

-The Most Frustrating-

I would have to say that the most frustrating part of having any type of chronic illness is the lack of communication amongst my doctors- or as they call it 'Physician Coordination of Care'.  It is a simple, money and time saving idea-

• You have your General Care or 'Main Doctor'
• He (or she) sends you to one or two specialist, and then reviews what their results are.
• Reviews all of your symptoms, medications, and tests results, and then can tell you what you have, and how to treat and hopefully cure it (if you are lucky).

But unfortunately that is just a pipe dream... and this is why:  MONEY.  It cost money not only to have all of these tests done, but one most have the schooling to know what effect a medicine is having on your body, and what all these symptoms combined could be.  That is why there are so many different specialist.

Not only does it cost money for all of these specialist, tests, the medications, the cures, but one must count in the time.

Who could possible want to do all of that?

Unfortunately, it is those of us with chronic illnesses, debilitating pain and diseases... and some times our family and loved ones.

It makes me wonder what ever happened to the Hippocratic Oath.  Do no harm...  did they just mean physical harm? Just to their patient?  

I know I am ranting, but with over 10 specialist (and some) under my belt now, some still on the pay roll, and a pharmacy running through my veins- and still no defining answer, because my doctors won't talk to one another- can't take the time to send a fax, I think I am entitled to rant once and a while.

And at the end of the day, I buck up, and wait for my next appointment.  I can always hope.

-Back From 'Vacation'-

One might say I've been taking a vacation from my pain, if that is possible.  I had an EMG last week, and since then, I stopped researching, writing senators, devoting any extra time to my 'pain'.  I had been spending my days relaxing with my boys, and just spending my free time with friends, occasionally taking a nap or two.
And yesterday, I decided it was time to get back into the habit.  I realized I had let my doctors charge me for a co-pay I didn't need to pay, and made sure that all of them were going to refund me.  We went to the library, and I got some books to do some more 'research'. The more I know about my body, the more I can advocate for it.  So I got a copy of 'Gray's Anatomy', and 'The Idiot's Guide to Fibromyalgia'.

I have a doctor's appointment coming up, and I want to be sure I am prepared.  And I have learned that one can have RSD and fibromyalgia together.  That could explain some of my fatigue and forgetfulness.

I have been keeping a list of 'symptoms' that have been bothering me of the past few weeks.
My muscle spasms have been so bad that my fiance can now place his hand on them and feel them.  I get them in my hands, feet, knees, back.  You name it, I have had spasms there.  At night, the are so bad, they keep me awake.

Perhaps the my 'vacation' has been some slight version of denial.  It seems when ever I come back to, I get a little depressed.
I did find a group, the American Neurologist Association (ANA), that has an advocacy program.  I do not know if they actually have advocates, but I thought what would be the harm in writing them.  Usually specialty groups (aka lobbyists) like to help people if it benefits their causes.  The amount of time I've had to wait now just to get some kind of diagnoses, let alone pain relief on my hip/leg has been ridiculous.  I figure if I can scratch there back maybe they could scratch mine.
Until then- I think I will go back on 'vacation'.  Reality blows.

Some Ups...

Last time I had posted I was feeling pretty down.  Not just pain wise, but also emotionally drained. 
Well I made sure I took care of myself emotionally the next day. As simple as it may sound- but it made a huge difference.  I spent 3 hours with the hair dresser taking care of myself (I lightened my hair, and had my eyebrows waxed), and I came out with new life.  I was still in pain, but I don't know if it was getting out of the house and the fresh air, or having someone to talk to, but I had new energy.

This past weekend I was about to buy new replacement pads for my TENS unit, which normal cast me $50 every 2 months, when I saw the ultrasound machine was on sale for $120.  After consulting with my partner- who normally does all of my back rubbing, we decided to invest in it.  I had ultrasound treatment the last time I was at physical therapy for the RSD in my shoulder.  It was very effective at getting the knots out, especially when my shoulder was frozen, and it didn't hurt, like the TENS unit.

TENS UNIT

Ultra Sound

I have been using the ultrasound now, and it has greatly reduced the pain.  I also use it on the RSD in my leg.  I haven't felt this good in months.  Now if only I could get some sleep.  I'm still having trouble with insomnia.  Not falling asleep no matter how hard I try to put myself on a schedule.  And once or twice I ended up napping when I was either in extreme pain or pain free. 

I've also been getting out too see friends of ours, and went to the library with my son and partner.  As fall has made its arrival, I can't stress the importance of getting out, and doing things.  Even the smallest changes make the biggest difference.

-Sleepless Nights and Bruised Bodies-

This was me last night, right before 2AM.  I don't know if you can tell- but I haven't slept much the past few months.  The combination of pain, stress, and a wandering mind has kept me up, regardless no matter how tired I am.
I used to go to sleep around 10PM and wake up at 7 or 8AM.  Now, I wake up at 9:30AM, no matter how much sleep I get, and then make my way through the day, half awake, sore, 'sleep at the wheel' so to speak.  Then evening approaches, and no matter what I have tried so far, I just can not get to sleep.  It's at least passed 1 or 2 in the morning before I pass out.
This vicious cycle is taking a terrible toll on my mental state.
I have become very emotionally irritable.  Things that I could let go, not bother me, I turn into a mean person over. I don't like it.
The other big side effect- I'm a walking hazard.  I've found myself doing really dumb things, like walking full force into door frames.  My body is on auto-pilot, and the captain is taking a nap. I have the bruises to prove it.

 

It all makes me all the more frustrated that the doctors do not seem to be listening to me.

For now all I can do is try to cope, and try to resolve my insomnia.  Doing daily tasks is even harder now that I have no physical energy, along with the pain.  

I spend the majority of my day in the recliner.  I am relying more on my family to do house work, and other tasks, as much I fight the want to not do so.  The bruises above were my dumb attempt at cleaning the home, which left me feeling physically ill the rest of the night.

The next thing I am doing is making sure I never miss a meal, and that I take at least a multi-vitamin once a day.  Every bit of nutrition seems to help.

And last, I try to make sure I stay as close to a sleep schedule as I possible can.  I make sure I go to bed at the same time every night- no matter how tired I am (or am not).  And I wake up at the same time everyday- on hopes that I can return to some sort of normal sleeping pattern.

This is all something I will have to keep you updated on... since it is still in the process... any tips are welcomed.

-Cohabitation/Relationships-

What does this have to do with chronic pain and RSD?  A lot if you have a spouse or partner of any kind.

I have been blessed with a very understanding man.  He loves me very much.  He works hard at his job, loves his family and gets along well with mine (which is great considering we live with my mother).
He is my best friend.  But adapting to RSD has been challenging for both of us.  I say both of us, because we both have had to change our outlook on our lives together as partners.  For instance, we always planned on having more children... and now, it is something we really are reconsidering.

But these are just some of the general things one thinks about when it comes to there relationship.

I have found one of the hardest things is physical contact.  Holding hands, snuggling on the couch.  Even who sleeps where on the bed takes extra thought.  He will go to grab my hand on a bad 'flare up' day, and it hurts so bad, I start to cry.  He quickly apologizes, and I know he didn't mean to hurt me.  The guilt sets in.
Last night was a fine example of how this syndrome can truly effect us.  I was having a bad flare up, and having a hard time falling asleep.  He hit the pillow and fell into deep slumber.  I laid there for over two overs, as par for the course now, and was finally drifting off, when he rolled over and slammed into my bad leg twice, and then brought his knee up into my side.  I was wrecked with pain.

Wide awake I ventured off to find another place to sleep.  I finally settle into the futon downstairs.  A half hour later, I got some sleep.  He never knew that he had hit me, he was sleeping. When I told him what happened, he felt terrible, and so did I.  I know he did not intentionally try to hurt me.

I have also found that this has taken a terrible toll on or sex lives.  It seems he is never in the mood when I am feeling good.  When he is, my body is so sore, and worn out, I couldn't do anything no matter how much I wanted too.  It also doesn't help that the majority of medications I am on can extremely lower any ones sex drive.

But we have found compromise in our life.  We talk more now than we ever did.  If I am feeling good, we at least snuggle on the couch.  He is still my best friend.  He has made a effort to do more around the house, and help out. He makes sure I don't forget to eat, and have snacks.

I think the biggest 'problem' is I feel guilty.  Guilt will do terrible things to your mind if you let it.  Make sure to keep an open line of communication between you and your partner, and keep them updated on all of your Doctor appointments, even have them come with you.  It makes a big difference.  Let them know that you hurt, and that it is not 'their fault'.  If they want to help, find ways.  Mine loves to rub the knots out of my shoulders, and it is a great way for us to spend time together.  Even if it involves RSD.

-A Moment For Strong People-

I try very hard to keep an emotional balance while dealing with my life. It is very hard.  And every few weeks or months, I crack.  It can take a song, a silent pause, someone saying the wrong thing, and I just start to cry...  usually it ends up while riding in car, left to my thoughts, or on hold for the twentieth time with a doctor's office.

Not only does the pain of RSD slowly wear me down, many other factors effect me as well. 
I am not talking about the depression...  I know depression, I've been to that dark place before...  what  I'm talking about those moments, after weeks of restless nights, endless doctor visits, people not understanding, that generally were one down...  The general stress in my life, that I talk only to four or five people in person about, but no one seems to truly understand.
I try very hard to keep an external shell of what I consider to be 'strong'.  I have to take care of my son.  I have a loving family.  I know complaining about my pain all day is just as stressful on them as it is to me. 
But ever now and then the dam needs breaks, and I just cry.  Whether there is a reason or not, I will cry for at least a good 10 minutes to an hour... and it feels so good.  Whether I cry in the car, or alone in the shower, sometimes one just needs to break down the wall and let it all go.

If you have no one to talk to, don't rely solely on online support groups.  Human contact is very important.  Get out as much as you can, especially with Fall and the holidays approaching.  Even if it is just going to your local library, go get some books to read to brighten your spirits, and while you are there talk to your librarians. Ask them if they know of any good books. And if need be, find a therapist if you do not already have one.  I have two (not the two people I was referring too).

Please Read and Be inspired-- I know it is a lot to read.

I did some research and found that the Oregon Senator, Ron Wyden, tried to pass something similar to the American Pain Act.  One June 13, 2001. he delivered the following on the senate floor-

(if you can not read this, let me know)

And so I wrote to him-

Dear Senator Wyden,
I was reviewing the congressional record of your statements introduced in front the Senate on June 13, 2001 (page 10651), and I was moved. 
My name is Katherine, and I have Reflex Sympathetic Dystrophy as a result of a car accident in 2002.  I have been trying to work with Senator Scott Brown to create something exactly like you said in 2001.  I continue to receive phone calls from his representatives in the Washington office, but it is my belief now that it is more to keep me quiet.I talk constantly to an internet support group to why we should write our elective representatives to help get the funding and proper care from pain doctors that we deserve.  But I have yet to create such a spark.I am inspired because I know it only takes one person who is motivated enough to get things done.  My grandmother, Jill Blakeslee, worked with senators to get the Untie the Elderly Bill passed.  She as nurse, and her father was her patient.  On his death bed, he asked her if she was his jailer or his daughter... and she never looked back from there.You could say I have the same spark.  My mother constantly tells me a little grease gets the squeaky wheel moving.  I used to kick box with my sister.  Now I can barely walk without my cane.  I am a  twenty seven year old mother of a two year old...  and I am not going down without a fight.
I believe in those words you said on the senate floor.  Do you?
Sincerly, Katherine

Do research on your issue, and just write a letter that inspires you, and you hope will inspire them.

Update- Talking to Senate

Senator Scott Brown's (R) office called my home today, for the second time, in regards to my e-mails about RSD, chronic pain and rare diseases.  While I was on the phone, I made sure to address about my concerns about the lack of a 'Pain Act'.  I hoped that Senator Brown would be interested in supporting such an issue.  The represented on the phone assured me it was an e-mail he was 'sure to stumble across', and would be in contact with me in the future.
We shall see.  But again- baby steps make a difference.  At least now I know their office is keeping up on the issue.  If they do not, well, I have been talking to local representatives and other officials I am sure would like my vote in the future, and have been listening to me from the start.

So this is the document I make all the hype about:

   The Americans with Pain Rights Act

All across our Nation from all walks of life too many Americans suffer from chronic Pain. Their dried voices remain mute and distant as fading stars to the health care industry that continues to neglect their pain without just cause. As Human Rights Watch indicated last year in their report on pain care, pain causes “terrible suffering”. Too many Americans suffer terribly from pain- which is for many a “life- ruining condition”. Even infants in neonatal intensive care are not immune to poor or even absent pain care which research has shown has long term consequences for their well being. In addition to the 77 million Americans that suffer chronic pain each year, many more will suffer as pain from arthritis, neuropathy, diabetes, obesity, back pain and painful procedures is rapidly on the rise-as are the costs for pain care. Last year, the University of Ohio Medical Center indicated chronic pain is our Nation’s most costly health condition. The economic cost to society for pain is estimated at $300 billion per year-and rising rapidly. The human toll of suffering due to careless neglect shall not stand.
Despite the terrible cost to Americans, as the 2009 report “A Call to Revolutionize Pain Care In America” indicates pain remains “tragically overlooked”. We believe pain will continue to be tragically overlooked unless and until the Federal government creates an energetic pain rights act for all Americans. We call on you to make adequate pain care for all Americans the law of the land. We call upon you to memorialize a Pain Bill of Rights as follows:
All health care providers providing treatments for pain be required to have thorough education in pain care as part of their professional licensing.
Enforce  International law against cruel and degrading treatment in pain care including- no one will be denied adequate pain care on the basis of whether or not a health care provider believes the person has pain, or has a history of substance abuse or believes that treating pain will interfere with their own goals/objectives as medical providers. Pain relief needs to be patient –centered and not medicocentric. The federal government shall investigate and impose fines on any provider that fails to honor the Pain Rights Act.
A pain registry shall be established which will allow all citizens in keeping with Recommendation 86-6 of the former ACUS to report and share their experience with all other Americans.
The Department of Health and Human Services shall spend no less than 4% of the research budget on pain . Pain shall be officially designated as a disease and have its own institute at NIH- The National Pain Institute” A much more diverse research agenda beyond the biomedical paradigm should be created.
The research agenda at NIH and IOM on pain must include 50% representation from advisory committees for people in pain who are removed to the seventh degree from people in the medical field.
Research needs to include much more primary prevention, curative and regenerative treatments so that people in pain aren’t forced to be dependent on suboptimal pain treatments indefinitely.
People with pain shall be given much more adequate information about treatment options whether they are officially recognized or not and their own decision support systems which are adaptive.

Update- Letter of Grievance

About a week ago, I wrote a letter of grievance to the hospital and parent company that oversees my pain clinic.  I was upset with the quality of care I was getting from the receptionists and nurses.  Doing things like scheduling a simple EMG had become an all day, emotional escapade.  The receptionists would questioned my intentions as a pain patient, the nurse would never return my phone call.  By the end of the day, I would be in tears, and nothing would be accomplished.

48 hours after my letter was written and sent, I received a phone call from the 'Director of Doctor/Patient Relations'.  I wanted to make it clear to her that my problem was not with my doctor, but with the staff.  She assured me that this was clear from my letter, and that a investigation was underway.  I also received a letter in the mail.

Today, I called to try and schedule that same EMG this morning, around 9:30 AM.  I was greeted by a friendly hello, a voice I had never heard before.  I replied as I always do, 'hi, my name is so and so, and I am a patient of this doctor.  I would like to schedule an appointment for an EMG.'  The old receptionist would have cut me off at my name, and snapped "what do you want", but this woman gently replied that she would transfer me to his assistant.  I thought my jaw was going to hit the floor.  Instead of dead silence while on hold, I was listening to Bach...  was I truly hearing this?  I received the answering machine, and left a message with my intent.
Normally I would have expected not to hear back from them until later this afternoon, by the end of the work day.  I was breathless when my phone call was returned less than a half hour later. 

The Director of Doctor/Patient Relations called me about an hour later, and asked me if I had noticed a change in the pain clinic.  I told her yes.  It was very positive compared to what I had experienced in the pass.  She informed me there had been some staff changes, and she wanted to know if there was anything else that could be improved upon.  I told her no. She asked my to call her in the future if there were any other problems, and that was it.
This is all I wanted from the beginning- to be treated like a human being.  If you feel like you are treated unfairly or unkind, you have rights as a patient.  Do not let anyone walk over you.

Have you ever had a negative experience with your doctor's office?

The Stigma (Part 2)

peThe New Drug Crisis: Addiction By Prescription
This was an article in this month's Time Magazine. Imagine my surprise (insert sarcasm).
It is these one sided 'news stories' that give the public the ammunition they need to have the stigma over pain patients, especially those who take opiate medications for pain relief. There was nothing in the article that talked about patients who take the medication responsibly. There was no mention of alternative treatments for chronic pain. Just some fancy charts, a list of celebrities who have overdosed, and the stories of a select few individuals whom have had bad experiences.

Now, we could all get mad at Time for writing and publishing crappy article, but that really wouldn't get much accomplished. There are actually clinics that practice such measures, and patients that abuse the system.

My suggestion- they mention a Governor who was in a quest against such practices. If you want to get to the root of the problem, climb to the top-
Governor Charlie Crist of Florida signed a law 'preventing felons from opening clinics and hiring doctors to write prescriptions'. Find leaders like this in your area, or nationally, that you think will listen to you, or have an interest on pain management, pain rights, RSD, whatever.
That is why we vote, and pay for them to be in office, so they will make a change in our lives.

It can happen. You probably wonder why I am so passionate about this. I know it can happen. My grandmother was just a nurse in a nursing home. Back then, patients were tied to their wheelchairs without the permission of the family (or other health care proxy), and left in a corner, because it was more convenient. One day her father looked at her, and asked her if she was her daughter, or her jail keeper.
That set a spark in her, and she drafted the 'Untie the Elderly Program'. The law was passed. She traveled the country, and taught some elderly care facilities the new law, and that Elderly men and women should not be treated like little children, but adults.

I guess you could say she has passed that spark on to me. I believe we all deserve to be treated as humans. It only takes a few minutes to write your voted representation, and that is their job.

Sample Letters-

Want to write your representatives, but don't know what to say, or who to write to-
You can find a list of all your reps here!

And here are a list of sample letters-
Ideas to write congress
Sample Letter The American Pains Act
Sample Letter To Rep
Sample Letter To Rep 2

These were provided to me by the CT Foundation and The Invisible Project founder Paul Gileno.
Thank you Paul.  We all have a common goal.  That is why writing to your representatives is so important.  That is why we vote them to be in office- and even if you didn't vote for the person in office, they are representing you.  Make them work for their job.

-Worse than 'One of Those Days'-

I had a list this morning.  Short and sweet:

1. Call in prescriptions 
2. Schedule EMG.

  I called my prescriptions in, I had two.  No problem.  I have the numbers to the computer menu memorized.  But I also had to make sure that my Neurologist's assistant (we will call her Beth) had called in my refill that I had asked for 2 weeks prior.  Easy enough.  I waited to talk to the pharmacist.  It wasn't there... and I hadn't had breakfast yet.  I called my neurologist's office immediately, because I knew I didn't catch Beth as soon as possible, that my medication wouldn't be ready for pick up by the time my mother would be coming from work to get them, and I needed them by tomorrow morning.  As soon as I got a hold of Beth, she told me she had already faxed over the script, but she would resend it, just in case. An hour later, I called the pharmacy to see if they had a copy, to be certain.  They told me they had received a script from my neurologist. 
At that moment...  I knew there was something about the day...  one of those days where everything is ten times more stressful than it needs to be.
Task one was taken care of (so I thought), and after lunch, I began to work on scheduling my EMG.  A simple task.  I called my pain management center near my home, and my doctor's nurse (we will call her Mary), explained to me that she would call me after having a word with me doctor.  Easy, right?  
Three hours later, I decided to call her back.  First, the receptionist ask me why I was calling.  She thought I wasn't being seen by them any more, because I had gone to a second pain center.  It was true, I had gone to a second pain center, but the doctors there wanted to work with my current doctor.  They want to collaborate.  What business is that of the receptionist,and why is she giving me attitude?  I just ask to speak to Mary?  I was polite, and ask to please speak to Mary.  Mary explained to me that the doctor was in the O.R. all day, and never received any information from the other pain clinic.  She began to get very short with me.  She told me there was nothing she could do for me, and thought I already had an EMG done on my leg.  I never had.  At this point I was exhausted emotionally, and told her I probably needed to get an advocate due to the lack of communication between the two facilities.  I know an advocate wouldn't help (even if one could I couldn't afford one), but it was the first thing that came out of my mouth- but it worked.  She finally said she would call the other doctor, even though I already was going to do so.
I don't know what was said.  And my EMG was never scheduled.  I just sat there, and cried for a few minutes, picked myself up, and filed a letter of grievance to the hospital regarding Mary and the receptionist's actions. 
Never let any nurse, doctor, or receptionist treat you any less than human.  If they do, go for a second opinion, and write a letter of grievance to the administration.  No one should get away with that.  A letter of grievance documents your case.

-Being Disabled-

I am disabled.  I've been disabled 'legally' since 1999.  I've been disabled as long as I can remember.

I  have been diagnosed with epilepsy, major depression, anxiety disorder, spondylolisthesis in my L5 and S1, and recently, RSD.

Some how, something in my life has made me believe that being 'disabled' is a bad thing.  That 'disability' is a dirty word.  Every time I walk into a doctor's office and check off the box that asks me what my work status is, I feel ashamed.  Every time someone asks me what I 'do for a living', I am embarrassed.

I did try to go to college, and it was obvious the first day that I was different.  I had to explain to my roommates what epilepsy was, what my seizures might look like, and why it was important that I took medicine.  On top of that, if that weren't embarrassing enough, I had to explain that if I had a seizure for more then 5 minutes, I had an emergency medication (what I refereed to as butt Valium) that needed to be administered anally. 

I only last one semester.

I tried working part time- and soon found that my seizures were not cooperating.  To make matters worse, I began to have anxiety attacks.  I soon lost my last job.  I was working as a librarian, working 2 hours a week.  The administrator asked me come into the back room, and asked me if my medical issues were going to become a problem.  I knew he wasn't supposed to ask me that question, but anything I said outside of that room would be heresy.  I quit there, on the spot, and walked home.

Soon after I applied for disability, and was approved.  My life was forever changed.  Some family members treated me different.  As if I was leaching off their tax dollars. Some treated me as if all of a sudden my IQ dropped 40 points.  Some didn't understand why I was disabled due to the lack of a wheel chair.

Even to this day, people ask me what makes me disabled... I start to tell them, and I see the half puzzled look on their face, and feel like I should stop.  I get embarrassed.  It has taken me years to find friends that truly accept me for who I am, and a man that loves me, and stands by my side.  I dated people before, and the minute they heard the word disabled, could not get out the door fast enough.  

Today, I understand I will probably not work a 9 to 5 job.  But I have found things I am able to do.  I am a great artist on the computer, and I am a full time mom.  So, when I am asked what I do for a living, now I check 'homemaker' and I feel a little better.  

Does it effect you?

-Needed an Emotion Vacation-

After my last post, I was a bit shaken up.  Between the let down at the pain management center, and lack of continue cooperation of my current doctors, I was feeling overwhelmed.  I have received over whelming support from many of my readers and other friends to continue writing.  I want to thank them all for making me feel like this is not all for nothing.
 I have had some more appointments with my neurologist, pain management doctor close to home, psychiatrist, and called my General Practitioner, to keep up to date with all my medications, tests, and any other new symptoms, feelings, progress of any kind.
The doctors are fine, but I always get this feeling from their staff that they are treating me like some addict looking to score.  It's a terrible way to feel on top of the pain I am already feeling.  And then talking about it in some support groups, I am constantly being badgered by one or two individuals who aren't fully educated, or have some notion that everyone that takes narcotics must be some addict.
Well, I want to set the record straight.  Not everyone who takes narcotics is an 'addict', just like everyone who drinks is not an 'alcoholic'.
My medication is closely monitored.  There are reasons that I am currently being treated with narcotics:

• I'm epileptic, which limits a lot of the medications for nerve pain that I can take.  My neurologist does not want to mess with my seizure medication right now because I haven't had a breakthrough seizure in over 2 months.  Considering the lack of sleep, and stress, that is pretty remarkable.
• I have had an allergic to Dilantin, called Steven-Johnson Syndrome.  This makes doctors prescribing medications very nervous, because a lot of medication is in the same 'class' family.
• Considering the medications I am already on for epilepsy, anxiety, and depression, there was not a lot of different 'class' families for the doctors to choose from at this time.

Medicine Class System

Now, I can't explain this to every nurse, or every person.  So I live with the dirty looks, the comments.  I am very aware that addiction is a possibility.  My father was an alcoholic, not an mean drunk, just a quiet alcoholic.  I am also aware that this fact increases my risks of addiction.  This is why I have been so diligent with my doctors, keeping my family involved in every aspect of my treatment, and taking the time to take care of myself.

In the mean time,  the doctors search for a new answer, or at least start to work together, and will work on getting me off the narcotics.

In the mean time, I've started to use a cane.  I only use it when I go out of the house, where their is the possibility that I will be walking or on my feet for most of the day. The dramatic change in how people treat me is mind numbing.  

They offer me their seats, hold the door for me.  I know these are just gestures of kindness, but I was brought of to never feel any different than any other person (any normal person).  To never let my disability hold me back.  And I'm starting to feel myself being left behind.

This is my last post for now.

I have been very persistent with my medical team, as inconsistent they may have been with me.  I met with the new pain team in Springfield yesterday.  My thoughts- finally we can move on, and begin a treatment plan with the RSD in my leg. After what has seemed like an eternity since I first started to feel symptoms in my ankle and rear, I was going to have the start of a treatment plan.
Little did I know how disappointed I was about to become.
The intern walked into the room, with my medical records in hand.  My latest MRI and X-Rays had shown that there was nothing wrong with my lower back, with the exception of spondylolisthesis in my L5 and SI, from which I was diagnosed with as a teenager.  She leaned over, and began to tell me that my records indicated I showed nothing significant that would cause my pain.  She then told me I had only one of the 'factors' that would indicate that would indicate CRPS,or RSD.  And have been the end of the appointment....
But I broke down.  My left ankle was significantly colder than the right. I can't fake that, and I was getting that feeling that she just thought I was there to get more medication, or attention.  I asked her just to touch my ankle... and then I begged her. I was crying.  I told her I didn't care what she called it, that I was in pain, and that all I want is some kind of relief, and that I am tired of doctor after doctor just dismissing me and passing me off to the next one, because they aren't sure what to do, or piling on another drug, and thinking that is all they need to do.
She left the room, so I could change into a gown, and did an examination of my leg and arm.  She seemed dumbfounded, and told me she was paging one of the heads of the pain center.

15 minutes later, a tall, older gentlemen,with a calm, gentle face entered the room.  Head did a thorough   head to toe exam of my entire body, just asking what just gentle brushing my skin, asking if it felt fine, tickle or felt 'yucky', and then ask were the sensation started and stopped.  It was the first time a doctor had asked me that, in the 8 years I have been in this pain.
Afterward, he proceeded to tell me he believed I had a real problem, but it was not RSD.  He is not certain what it is yet.  It is some type of neoropathy.  He also believes I am on too much medication.
A plan has been put in place so he can consult with my pain management team back home.  I am also going to see a pain psychiatrist (for the first time).

It is a lot to swallow.  I have spent the past few months researching and preparing to live with RSD.  I was coming to piece with it.  I have met many nice people on support groups... and now I feel like my world has been shaken, and the lights have been turned off.
Living with any pain of illness,and not knowing what to call it is scary, at least for me.  Now to start the process all over again... and perhaps in the future I may start a new journal.

If you think you are not receiving the care you deserve from a doctor, get a second opinion- and if the staff is treating you any less than human, get their names, and report them to the administration.

Personally Disappointed

I'm disappointed with the RSD community.  A few people patted me on the back for taking action and writing to senators.  But when I asked my fellow sufferers what they would want to make a difference, a change in their lives as people with RSD, not one person spoke.  The crickets chirpped.

I know everyone wants a cure.  I would love to get rid of this burning pain, stop taking the meds, and  move on to living a full pain free life where I am not dependent on those that love me.
But that is not my reality.  And it saddens me that no one feels strongly enough to voice the same.

What is the point of trying to help people that don't want to be helped?

RSD has robbed me of freedoms I didn't even know I had.  I have to spend a majority of my time sitting in a recliner.  The majority of my savings goes to medical bills.  I can't write or paint anymore.  I have trouble picking up my son.  And if the emotional pain were not enough, I have to live with the fact that I am probably going to get worse, and every time I see a new doctor, I have to try and convince him that this is a real condition.

It saddens me that no one has their own story that makes them feel as mad or upset to want to change what has happen to their life.

Update-  I have been working with the RSD community, and I should apologize for this post.  This was a combination of all of my frustrations- pain, doctors, and at the time, a lack of overall support, not just from the RSD community.  Now we are all working together, and hopefully will get some things done.  Baby steps are a start.

One can make a difference.

I e-mailed my senator 3 weeks ago, about CRPS. I recieved a phone call today from his office, and they want to know all about it. One person can make a difference.

Scott Brown's Washington office called me today, and not some recorded message. It was one of his officials. They wanted to know more about RSD (CRPS).
About 3 weeks ago, I wrote him (as well as John Kerry, my local representatives, and Obama), regarding a meeting the board of health senators had regarding ...rare diseases.
I also wrote how a lot of soldiers are coming back from serving for our country, and aren't receiving the care they need.
The official I talked to told me to keep in touch. There currently isn't any piece of legislation going on regarding RSD, but if I have any information to continue to e-mail him, or even call.
I did call back, and I didn't get a machine- I got the official. I found a piece of legislation passed in Michigan, and informed them of it. I also talked to him about the hardship of having an 'Invisible Disability'. He told me he would pass the information along to Scott Brown, and took down all the information.

 

Now I just need to figure out what would make a good piece of legislation.  I am serious about making a difference for those of us who suffer from RSD.  Even invisible disabilities.  

If anyone has ideas, please comment or message me, or write your senator. We can all make a difference.

 

I haven't posted in a few days-

I've been very busy with family and medical tests.  And on top of that, I have comedown with laryngitis.

So, my family is the most important thing to me. I have my fiance, son, and we live with my mom.  My fiance's parents come to visit when ever they have the time. And we visited with My fiance's dad,and his wife and step daughter this past weekend.  It was a good visit. The only rough part for me was his father talked about a man in home depot that he came across who was 'limping around', that he could tell just wanted to be home all day on social security. I know he wasn't trying implying anything towards me, but it still bothered me.
I wish people would think about who and what they are making fun of before they talk,because one never knows who is listening.  And I am just as guilty of this.  It sounds very P.C, but I wouldn't want someone making fun of my child like that. And who knows, one never knows what is really going on with that person.  I'm learning that lesson the hard way.
So, I finally gave in and bought a cane. I don't use it everyday, but just when I'm having really bad flare ups, so I can still get out, and do things with my family.  I've become very sub conscience when using it.  It is a weird feeling having a 75 year old man holding the door for me.
And I had several X-rays and an MRI done of my back, but I won't recieve the results until next week.

I did go to the New Pain Center-
Because I wasn't displaying the four signs of RSD, the doctor is waiting for my medical records before she even starts to treat me.  Until then, I have been continuing to see my previous Doctor.  He isn't a bad doctor- he is actually very good.  It is his staff that is poor. My pain has be the same, consistently shooting and burning in my leg and across my back.

My mom, in the mean time, has been showing signs that she is not doing well.  It makes me nervous, especially since she won't let me know how poorly she is feeling.  I made her go to the ER on Saturday.  They have since then done numerous blood work, checked for tumors (that came back negative), and are waiting to send her to a cardiologist.  I know she is more concerned then she lets on, but she puts a front on 'because she is the mom'.  She forgets her children are adults now, and that we are going to worry about her.
I can only sit back and wait, and hope she stays well, or the doctors keep on her case.

Starting to collect donations for -The Invisible Disabilities Advocate-

-A Long Day,Quiet Weekend-

It took over a month of torture tofinally get my pain management to confirm what I suspected to be RSD.

One month ago, I realized the pins in needles in my ankle were similar to the ones I had in my shoulder when I wasn't having a flare up- and I kid you not, the next day, my ankle hurt so bad, all the way up to my butt check (the politest way I can put it), I could not walk.  I called my pain management doctor's office hoping to get some kind of help- they respond by telling me the following:

1. "RSD does not spread"  (Yes, it does)
2. "The doctor is on vacation for a week.
3. "Our nurses are over booked and under paid."

I was so frustrated, and hurt so bad, I broke out into tears.  No one should be treated that way, especially a person being treated for chronic pain. I did get the reception's name.
That night I ended up in the Emergency Room for 4 hours, just to get a shot to relieve the pain over night so I could sleep.  I also ended up with a prescription of an opiate I had never taken before.
Later that week, I was back in the ER. The medication they prescribed was making it hard for me to breath.  I spent the entire day there.  My fiance asked his mom to babysit, so we didn't bring our son to the ER.  They sent me home and told me to see my GP and take my old medication- I was back to where I started, and very frustrated.

When I saw my GP, he couldn't understand why the pain management hadn't started me on Lyrica yet, and then took me off of Nortriptyline, because I had an extremely low blood pressure (hypo-tension).  I was taking Nortripliline not for it's anti-anxiety purposes, but to treat nerve pain. 
As a result, a day later, I ended up back in the ER.  Extremely frustrated, and at my wits end, I was hoping they would send me home after conducting at least a X-Ray of my back to rule out the possibility of a pinch nerve.  Instead they sent me home, and increase my opiate intake.

I had my stellate ganglion block 4 days later.  The surgeon was aware of the way I had been treated by her office, and had known I had not yet seen my pain management doctor.  When I came in, and she found out that I had been back to the ER twice, and still had not heard from the office, she called herself, and made me an appointment.

Friday, I saw my doctor.  Beyond frustrated, exhausted, and emotionally drained, I waited in the office with my son and fiance.  I hadn't been able to play with my son all month, hardly able too keep up with him.  My fiance had been my emotional rock and stood by me even when I took my frustrations out on him.

The doctor came in and apologized.  Talked about a SCS implant (I'm not interested, everyone who has had one that I've spoken with hates it), and wrote me a script for steroids. He will talk to my neurologist about Lyrica, and sent me home.

I'm going to a new pain center on Monday. No one should have to wait a month, and be treated any less than a human being. 

A Quick Ode To Moms (and Dads)

I want to take this moment to thank all the parents out there who stand by their children who are going through chronic illness.  As a relatively new mom, I know the worry I feel when my son is sick, or bumps his head.  I could never imagine the panic, frustration, and suffer a parent of a child who has a chronic illness must feel.

I was diagnosed with Epilepsy at age 13, and have seen what worry and stress it can do to a family.  As I have gotten older, and my medical needs have increased, I have been blessed enough to have my mother by my side.  I will never have the words to thank her, and can only imagine how she feels.

So I want to take this time and let all of you parents out there that we do appreciate what you do for us, no matter how young or old we are.  It takes an extremely strong person to care for a child and put all of their needs before their own, and there should be an award for what you do.

Thank you.

Twitter, Customer Service and Plastic Dolls

I know what your thinking- where is she going with this....
It seems these days that if you have any kind of customer service problems that you want taken seriously, the best way to resolve them is via Twitter.  Well, I recently had taken issue with a gym I joined, Planet Fitness, and that is exactly what I did.  This is my Twitter story-

A few months after I gave birth to my son, I figured I would join a gym to help ward off the baby blues.  Planet Fitness was having there 'Special' join for $29.99 a month, and bring a friend.  It sounded like a great deal, since I can't drive (because of my epilepsy).  This way whoever drove me, could work out with me as well.  I probably went a total of 6 or 7 times total.  Maybe 14 at the most (and that is pushing it).  I haven't been back since my son was at least 6 months old, and he is almost 2 years old now.
In that period of time, little did I know, they had continue to bill a bank account I thought I had closed.  I do not blame them.  That is my fault.  I should have been keeping tabs on it.  Luckily (and unlucky for me), it had overdraft protection, and I racked up about $500 in gym fees, for a membership I wasn't using.
I received a letter last month letting me know that I owed Planet Fitness money.  You can imagine I was a bit shocked.  In  the past year, I have been dealing with being a new mom, been diagnosed with RSD, and been through so many tests and medications, I couldn't count.  Planet Fitness was the last thing on my mind.
I ask the woman on the phone if I could cancel my membership.  She told me I had to come down to the gym to cancel my membership. I explained to her I couldn't drive, or walk, and she asked me if I could get a cab.  Affened, I politely ended the call.  I had to wait until it was convenient for someone else to take me.
Well, a couple hours turned into another month.  I couldn't be mad at my family, though. They already drive all over God's great creation to get me to the doctors', and the Emergency Room, and help me with ever day tasks we all take for granted.
I finally got to the gym, and was hit with another $59.00 that I owed.  I paid it without complaint.  I just wanted it to be over with it all.
I Twittered about my experience.  I understand there are policies in place for reasons.  I don't want my money back.  Neither Planet Fitness nor I expected the medical complications to become a factor in or 'business relationship', and I did agree to all terms when I signed the paper.
But I wish they would take to heart that not all of their customers fit the mold of the perfect customer.  Not all of us just go on 'vacation for a year', as their representative said to me in a phone call, when I asked why they didn't call members who where inactive for a year.  Some of us encounter unexpected events in our lives that are more important then going to a gym.
And if I understand that when I say their employee didn't tell me that you can 'cancel your membership by mail as addressed in the policy', I know it is here say, but I think it is important that the company be aware of where I am coming from.
I am an individual who is not looking for reimbursement.  I was just trying to give suggestions to prevent further problems like this from happening.  There was no need to be rude. 

So, if I haven't bored you with my long story, I would love to hear your stories of how you haven't fit the plastic doll mold of other companies 'policies', and problems you have encountered.
We aren't all Plastic Dolls.

No Rest For The Weary

It's true, and I never really understood it until recently.  As my pain has grown increasingly worse, with no real treatment, the insomnia and sleep deprivation have also increased. 
I can remember a time when I would wake up around 8 am, take a 2 hour nap at 1 pm, and then fall asleep at 9 pm.  I could roll around, and get all comfortable in my covers.  Granted I was taking a lot of medication that made me very drowsy, I didn't work, and I wasn't a mother at the time.
Now, I wake up around 7:30 am.   I do not nap, because my son needs me, and I'm afraid if I do, I will have trouble waking up.  I have trouble falling asleep because of the intense cramping in my legs at night... and I have to sleep perfectly still on my back.  Alfred (my significant other) calls it 'my princess in the pea' sleeping.  I want to snuggle with him. I miss snuggling with him.  I am constantly getting up, because I am restless.  I don't fall asleep until sometime past 2 am.  I barely dream anymore. 
The worst is being tired all day.  I could fall asleep at any moment... but at the same time it is so hard to find the time to nap, or the ability.  The pain makes it so hard.

One full day of sleep, just to keep up.  Now that is a good dream.

-Stellate Ganglion Block-

A mouthful, at the least.  I had my third block today... some of you may be wondering what is it and what does it do...

• What is a stellate ganglion block?

A stellate ganglion block is an injection of local anesthetic in the sympathetic nerve tissue of the neck. These nerves are a part of the sympathetic nervous system. The nerves are located on either side of the voice box, in the neck.

• What is the purpose of a stellate ganglion block?

A stellate ganglion block blocks the sympathetic nerves that go to the arms, and, to some degree, the sympathetic nerves that go to the face. This may in turn reduce pain, swelling, color and sweating changes in the upper extremity and may improve mobility. It is done as a part of the treatment of Reflex Sympathetic Dystrophy (RSD), Sympathetic Maintained Pain, Complex Regional Pain Syndrome and Herpes Zoster (shingles) involving an arm or the head and face.

How long does the stellate ganglion block take?

The actual injection takes only a few minutes.

 Taken From Here

 Well, I get mine with just some 'local anesthetic'.  No medication to make me relax... I just lay on the table, head back, and the surgeon feels my neck for the nerve.  Once she think she has it, she sticks the needle in my neck, and aspirates the needle to make sure there is no blood.  If there is, she is in a vein and not the nerve (which is a very bad thing, and if medication were to be injected, could have bad consequences).  
Then they slowly inject medication into my nerve.  Beside the initial injection, my experience is it doesn't hurt.  I get some tightness in my throat (because I am very thin), and then my eye slowly begins to droop.  It stays that way for the majority of the day.

However, the pain in my arm, neck, and jaw is gone from the time of injection until later that evening.  Some people experience longer and different effects.

• What should I do after the stellate ganglion block?

You should have a ride home. We advise patients to take it easy for a day or so after the procedure. You can perform the activities that you can reasonably tolerate. Some patients may go for immediate physical therapy.

• Can I go to work to work the next day?

Unless there are complications, you should be able to return to work the next day. The most common thing you may feel is soreness in the neck at the injection site.

• How long the effect of the medication last?

The local anesthetic wears off in a few hours. However, the blockade of sympathetic nerves may last for many more hours. Usually, the duration of relief gets longer after each injection.

• How many stellate ganglion blocks do I need to have?

If you respond to the first injection, you will be recommended for repeat injections. Usually, a series of such injections is needed to treat the problem. Some may need only 2 to 4 and some may need more than 10. The response to such injections varies from patient to patient.

Read More Here

A Moment... and a Pause.

I have friends up this weekend.  I haven't seen them in over 5 years.  My best friend and his girlfriend. 
And the ironic part is- my best friend appears to be suffering from RSD. 
The doctors diagnosed him with neuropathy this past winter.

Neuropathy: A condition which is characterized by a functional disturbance or pathological change in the peripheral nervous system.

But after we discussed both our pains and experiences over the past years, it became apparent to me that it sounded more than just neuropathy to me. Could he possibly be suffer from RSD?

I checked my favorite link for an article that compared the pain of diabetic Neuropathy and RSD-

The neuropathic pain of Diabetic Neuropathy is the sole manifestation of this painful Neuropathy. The painful Neuropathy is accompanied by not only burning pain, but also stabbing and electric shock type of pain because in both diseases (Diabetic Neuropathy and RSD) neuropathic pain causes damage and electric short in the nerve fibers. This is the reason anticonvulsants (especially Tegretol) are so effective in both diseases. Obviously, Tegretol has to be non-generic. Carbamazepine, which is the generic name of Tegretol, does not do any good for either condition. Neurontin is also not as effective as the true, brand-name Tegretol. The neuropathic pain also causes temperature changes in the extremities in both diseases.

2. However, the RSD requires three other conditions to meet the minimum requirement of diagnosis of RSD. In other words, simple neuropathic pain is not enough for the diagnosis of RSD.

3. The other three conditions, other than the neuropathic pain, are:

A. Reflex constriction of the muscles in the extremities in the form of flexor spasm, dystonia, tremor, or weakness of the extremities due to muscle spasm (Orbeli phenomenon).

B. Inflammation in the form of edema, swelling of the extremities, skin rash in the referred pain area away from the nerve damage, and neurodermatitis in the referred pain areas away from the nerve damage.

In addition, in RSD the inflammation can cause trophic changes of the skin and hair, as well as inflammation of pain in the synovia and bursa of the joints. Such changes are usually not seen in simple Diabetic Neuropathy. So, if there are the above mentioned manifestations of inflammation, then were are not dealing with simple Diabetic Neuropathy, but the complication of RSD.

C. The disturbance of the limbic system in RSD is more persistent and more resistant to treatment with anti-depressants.

The symptoms in yellow were ones we shared, and knew we both shared, and could be either diagnoses.  The ones highighted in red, though, were things he discussed with me that made me consider otherwise.  He has only seen a foot specialist, lost his job, and is waiting for SSI to kick in.

Hopefully he can get to see a pain management doctor.  He is only taking anti-seizure medication for the pain, and wearing 'New Balance' shoes, as recommended by his doctors.  His insurance will not approve Lyrica.

For now, I am letting him use my TENs unit... and we are both getting some relief from our pain.  It's nice to catch up with old friends, no matter how you feel.  I feel like a teenager again... and then I fell old... and that's okay too.  I have a smile on my face.

Repetition-

One would assume that if you continued to repeat yourself, finally your point would get across.  I have been repeating myself for 3 weeks now, getting several different doctors' opinions, given them all information regarding my condition, telling them what one another has said verbatim, and I am no closer to where I started from.
Wednesday my general care took me of the only medication I was taking to help to control nerve pain (nortriptyline), because my blood pressure had been  running so low (84/57) he was afraid I might pass out.  Was it a bad call on his part, no, I don't want to pass out, but what am I supposed to do for pain management?

I spent last night,and some of this moring in the ER for the third time.  My pain was so unbearable I could not sit or walk.  My pain management doctor is unavailable until mid August.  My neurologist- late August, and he only treats me for my seizure disorder...  the ER doctor just increased the amount of opiates I take,and told me to see a chiropractor.
I felt defeated, and angry.  It has been like running into a brick wall at full force over and over again.  One doctor tells that the RSD has spread to my leg; another telling me RSD.  I have a surgeon not even look at my leg, and tell me it is RSD.  And finally 2 doctors tell me they can't be certain what is going on without the proper tests or a chiropractor letting them know that everything is in alignment.
If you have this figured out- you are way ahead of me. (Slams head on desk).

I woke up this morning and got on my GP's ass to finally give a referral to a new pain clinic (which I had provided his assistant the phone number with) in hopes of getting some answers, finally.  The receptionist asked me what I wanted her to do- I tried with all my might not to scream at her, with what little sleep I had gotten. 

30 Minutes later, I had an appointment 1 and a half from now.  For now, it is just a waiting game.

-Today's Link-

The Depression Factor.

It is a known fact that people with RSD commonly get depression.  I'm really starting to understand why. 
It is not just the pain the is frustrating, or the inability to do things I once could... I'm starting to adapt as the days go by.  I admit, the exhaustion does take it's toll on me.  I love to go for walks, and just walking around the block makes me my body need to crash.
There have also been the days that I haven't been able to go out and help in the yard or around the house.  Some might think, 'yeah, a free pass,' but when you feel like there is no order in your life, the clutter gets to you, and all you want to do is clean... or at least that is how I have felt. And it is not easy to do with a 2 year old in the home.
The days of isolation aren't so bad, now that I have found a few online support groups to talk to.  That is what is great about today's 'Modern Age'.  One can get all the company they need from the comfort of their home.  It also helps when riding in the car kills your bottom, and other parts of your anatomy.
No, I think the one thing that has depressed me the most is the fact that the doctor's don't listen to me, or do not take my pain seriously.  When I pick up my medication, the pharm techs look at me like some kind of drug addict.  It depresses me that I have become the 'fax machine' between four different doctors, because they're too busy on vacation to communicate with one another.
I am depressed because there are days when I feel like aspects of RSD are going to consume my life, because a doctor didn't care.
I have had hypo tension so bad for a month now that my GP is worried I might faint, but he doesn't know what to do, besides take me off one of the meds that my psychologist and neurologist started me on 2 months ago. He didn't consult them, however.  He also doesn't believe that RSD is a type of Chronic Regional Pain Syndrome.
I have been in the ER twice now because of two other doctors' "mistakes".

I am losing faith in the medical community.  I am becoming depressed.

RSD Support Groups-
Reflex Sympathetic Dystrophy Support
Coffee House, Motion Parent's Group, Grown Up's Support Group
and the are a few on Facebook.

The Undiscused Female Aspects-

As a woman with RSD,one of the most discussed aspects of the syndrome is how hormones can effect flare ups.  Before my diagnoses, I noticed that around the time of my menstrual cycle, when my hormones would be highest- both during my period and mid-cycle, my pain increased, mostly during my period. 
This has made sense to me, because my epilepsy disorder reacts the same way to the hormonal changes to my body.  My seizure activity increases at the same time.
When I became pregnant in 2007, some of my RSD symptoms lessened, and I also had some flare ups, during the first trimester, and towards the end of the third.  After I gave birth, my pain level was almost unbearable at times.
Since my diagnoses, however, not only has the doctor not addressed this issue, but it took me a month to find other woman suffering from RSD discussing the same  symptoms.
We all were experiencing an increase in flare ups during 'that time of the month',that we could not find any pain relief from.
Yesterday, I did find information that would link these two together-

There is no contraindication for an RSD victim to become pregnant. As a matter of fact, as is the case with some other neurologic illnesses such as multiple sclerosis and epilepsy, pregnancy may be beneficial in the management of the disease.

 
Excerpt From-

In conclusion, this would suggest that hormones do play a role in effecting RSD.

A Day at a Time.

Yesterday was a very bad day.
With RSD, one will have good and bad days.

Saturday was great. My pain level was low, and I pushed myself to do as much as I possibly could.  A big mistake.
Yesterday, I was laid up from exhaustion, my leg throbbing and burning.  My arm was in unbearable pain.  As a result, my fight or flight response was in high gear.  My heart felt as if it was going to jump out of my chest, and at times I felt like I couldn't breath.
I still had to be a mom, too.  My significant other works all day on Sundays, so it was my sole duty to take care of our 22 month old.  I brought him out side to play.  I should know by now not to turn your back for one second on your child, but I did to get a start on picking up the yard.  Two seconds later, he was down the driveway and headed for the street. With every bit of strength I had in me, I ran after him, forgetting what pain I was in.
I brought him inside, and broke down.  For a breif moment, I thought to myself, if I had known I was 'going to be this sick, I would not have had a child, it is not fair to him'.  What a terrible thing to feel...  to think.  But there is truth to that.  It isn't fair to him. As much as I love him, what if I wasn't able to catch up to him?  I was sick to my stomach with fear.  The prospects of my future seemed dire.

 But I can not allow thoughts like that consume me. Not now, and not ever.  Any parent with a chronic condition needs to remember this- no your child did not ask for 'this'- but neither than you.  And it does not, and will never change how much you love you child.  Make the best of every day...  and that is what I try to do.  Make the best of each day- and remember to take care of yourself. Because if you are not feeling good, than you can not give your best...
Some people forget that... even me.

But I digress (as always).
A new 'thing' started last night.  I started having a hissing noise in my ears.  Only sometimes.  I looked it up today, and was surprised to find out it was tinnitus.  Can be caused by RSD as shown here.
I have made an appointment with my GP for Weds.  I am looking to change my pain mangement doctor to either a new pain management center, or another RSD specialist. They may be an hour our of my way, but I can't keep up with this.

A RSD support group-
Reflex Sympathetic Dystrophy Support Network

Book of the Day