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.