Sunday, October 24, 2010

-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.

Monday, October 18, 2010

-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...

Tuesday, October 12, 2010

-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

 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)

Thursday, October 7, 2010

-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.

Tuesday, October 5, 2010

-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.

Saturday, October 2, 2010

-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.