Tuesday, August 31, 2010

-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.

Saturday, August 28, 2010

-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?

Thursday, August 26, 2010

-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.

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.

Tuesday, August 17, 2010

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.

Monday, August 16, 2010

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.

Friday, August 13, 2010

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.


Thursday, August 12, 2010

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-