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The medical information contained in this blog (when it appears) is not intended to provide medical advice of any kind. Any medical topics discussed here are as they pertain to the author and her conditions only. Do not make any changes to your medications, treatments, etc. without speaking to your personal physician first.

Saturday, November 27, 2010

Made It Through Thanksgiving

Woot! I made it through Thanksgiving!

I am quite pleased that I managed to cook the entire meal. Ron and Stephanie helped me with preparation and such, but I was able to be there for the whole thing. Including Bridgette's assistance in making Eggplant Parmesan for my step-son Nathan. He is a vegetarian and since he doesn't eat meat, he would have no main dish. So I made the eggplant so he would have a vegetarian main dish to eat along with the side dishes. Bridgette's help was real cute.

My camera's battery was dead, so I had to take pictures with Bridgette's Fisher Price camera. So they're not great pictures, but they clearly show her dipping the eggplant into egg then breadcrumbs, ready for baking. She enjoyed it. Her dad helped her while I took some pictures.

Thanksgiving 2010

It was a good day. I was in bed by the time the meal was done, so I didn't get to enjoy the company we had over, but I was still glad that I was able to cook the whole meal.

Today I am already back to normal, with low levels of pain. The radio frequency definitely worked!

Thursday, November 18, 2010


I wrote a couple of poems back in 1997 about what it felt like then to be living with constant chronic pain. I thought back then they were a bit over the top, but after 10 more years of living like this, they aren't. They are very honest and very real and very accurate.

These two poems have not been edited. They are exactly they way they came out of my mind when I felt this overwhelming need to write them. Maybe someday I will edit them, though I do not want to as their errors show the confusion and difficulty with mental tasks that are also inherent with living in pain all the time. Anyway, here they are:

Aug 13, 1997
by Missy H. ©

Every day is the same

each day filled with pain

can't do what I want to
can't do what I need to

I am forced to sit

sit and watch

my life fade away
my children grow apart
it tears at my heart

I wonder why
why does it have to be this way
I try to stay upbeat
to smile through the tears

inside I am dying
my heart cries for release
my mind aches to live again

to be able to walk, to run
everything on hold
as I watch my life go by

sitting, stranded

wrapped within this cloud of pain..

May 1997
by: Missy H. ©

People say God never gives you more than you can bear
I have to wonder, as I sit here
wrapped in pain, my body throbbing
all day and all night
no end in sight

My mind struggles to ignore
Fighting constantly
My body wracked with agony
My heart cries for release
Cursing my weakness, the tears hot on my cheeks
How much more must I take?
What sin have I comitted, to earn such a fate?
The pain never ending
The fear having to yield to my body's shortcomings
The guilt of not meeting my role
I have to wonder, is this too much for one soul?

Struggling To Be Normal

Most people sleep at night, get up at a certain time each day then go about doing their daily activities, be it work, school, play etc. For me, my days and nights are all mixed up. Due to pain I have a difficult time sleeping at night. By the time I manage to do so, it is usually early morning (4 to 6 AM). I may sleep 4 to 6 hours, sometimes less. This goes on for a few days until my body reaches pure exhaustion from lack of sleep and I end up sleeping 12 to 16 hours which means I wake up somewhere around 4PM to 8PM. Now I'm wide awake and there is no way I will sleep at night. This cycle of sleep disturbances can be triggered very easily. One single night awake due to pain, can take me 2 to 3 weeks to get back to sleeping at night. Each additional day/night of inability to sleep or stay asleep only makes it take longer to get back to normal, hence the 2 to 3 weeks.

Right now, I am struggling with trying to get back to sleeping at night since my pain is in good control. I am not doing very well because my body is used to being awake at night (from the weeks spent in bed watching netflix) and only sleeping when exhaustion hits. This means that I have a difficult time sleeping.

I started meditating before bed. Using breathing and visualization to help my body relax and feel sleepy. It helped a bit, but not perfectly. I still didn't sleep until 3 or 4AM, and woke between 10 am and 1 pm. But that at least gave me some daylight hours. Then came the last two nights when I just couldn't sleep until 6AM. (Today was 8AM). Yesterday my alarm clock woke me at 11AM like I had asked it to, and I did not take a nap. I was very tired when I went to bed at 10:30pm. I really thought I would sleep all night. No such luck. I was still awake at 6AM, and then at 7 and 8. Somewhere around 9AM I finally fell asleep. My alarm was set for 12:30 in the hopes it would be just a nap, so I could sleep tonight. No luck, I apparently turned it off in my sleep (when it went off) and did not wake up until 4:30PM. ARRRGGGHHHH!!

This is so frustrating because now I am wide awake and I KNOW that there is no way I will sleep tonight. I've tried forcing myself to stay awake until the next night, but it doesn't work. I end up falling alseep where ever I happen to be sitting (my lay-z-boy, my computer chair etc).  So I end up going to bed trying to take a short nap of 2 to 3 hours. Nope, when someone comes to wake me up I just can not wake up and then I'm out for 8 hours or more and wake up that night or late evening.

I just want to be normal. Like I was before the additional break to my SI joint, back in 2000 through 2003. I want to be awake during the day, sleep at night, and do things. But no such luck, not for me.

Now comes probably being awake tonight and struggling to stay awake all day Friday, so I can maybe sleep Friday night like a normal person. Here's hoping I can do it!

Saturday, November 13, 2010

It has been a while..Radio Frequency Follow Up

I realize it has been a month since my last update and I will explain why. The first radio frequency procedure, which I blogged about on the 13th of October was done after I had already spent 6 weeks in bed. Sadly the insurance companies are who decides who these procedures are doled out. I don't understand it because it seems, in my case at least, that their way of doing it is a waste of money and saves no one any time or money. I've had these procedures 5 times, and they have worked every time (this one included thankfully!). Yet the insurance company insists that I have to have the diagnostics done at two week intervals, followed by the radio frequency procedures (also at two week intervals). Before these can commence I have to return to a condition that requires these procedures. What this means is I have to return to being pretty much unable to function due to pain. Since I live in a part of the country where prescription abuse is pretty high, raising my pain medication during these times is not an option. This leaves me in extreme pain, all day long, for at least 2 months before they will even schedule the diagnostics. After the diagnostics I have to do a follow up with the doctor, who will then schedule the radio frequency. All told this means I was stuck in bed for almost 3 solid months, most of it spent in extreme pain without adequate pain control. All so I could go through hellaciously painful procedures, to control the pain. I get to repeat this process every 8 or 9 months or so because the insurance company demands I allow the radio frequency procedure to wear off completely, to see if my pain is as bad or worse than it was before.

The weeks spent in extreme pain are depressing, debilitating mentally and emotionally, and cause muscle loss due to inactivity, which can also increase the chances of a blood clot and other diseases. This is NOT good. Then comes the multiple appointments of painful procedures that increase the already high level of pain. These procedures cost in the thousands of dollars each time. There is no exception made for patients like me. Meaning patients who have a history of successful radio frequency ablation in their pasts, no new injuries and the same pain caused by the same conditions to just skip the diagnostic steps and save the insurance company 5 thousand dollars per test. (this is the amount listed on my EOB, explanation of benefits) for each diagnostic procedure. The radio frequency itself comes in at around 15 thousand. By demanding these diagnostics every time the insurance company is billed for 40 thousand dollars at the end of each cycle, when they only NEED to be billed for 30 thousand. (Trust me, they don't pay even half of the billed amount!)

Anyway, what happens when I am forced into such extreme levels of pain, and pain increasing procedures is I withdraw. All my mental and emotional energies are focused on making it through each day, and on many days making it through the next hour or even the next 5 minutes. I have no extra energy for anything else. Of course this triggers a depressive episode, which does NOT help the situation at all. End result, I get real quiet. This is why I was not posting here or on my stitching blog. I did manage to keep up with some emails, read a few blog posts from others, but not much more than that. I did do some stitching, but mostly I watched Law and Order on Netflix with my son's laptop and just withdrew from everything.

This time, after the radio frequency was done the Dr. decided to do toradol injections in the SI joints. I wasn't expecting it to help much. I was hoping to do radio frequency on both joints, but he preferred these injections. They use toradol on me as I can no longer do the steroid injections. Surprisingly this has brought decent results. So far they have only done the left side, but it has made it possible for me to get back to cooking dinner, doing some housework and laundry. My pain is A LOT lower than it was and I am out of bed.

However, coming out of that shell that I retreat into is more difficult. It becomes a matter of forcing myself to do things, whether I want to or not. Eventually the excitement and happiness of being able to do those things without paying for it with extreme pain, makes me realize that I am, once again, back to myself. Oh not the self I was years ago, but the self I was a few months ago. That realization and those wonderful feelings make it possible for me to continue to do things without as much mental effort of forcing myself.

But I have noticed that this gets harder every time I have to go through it. I am tired of having to return to a place of severe suffering every single day, just to satisfy some stupid insurance "rule" that really doesn't make sense in my case. I'm tired of having to live with extreme levels of pain, all day long, because I live in an area where prescription drug abuse is higher than in other areas. I have proven, over years and years, that I do NOT abuse my medication. That I am no addicted to it. Yet no exception can be made in order to try and control my pain better during those months that the insurance company demands I suffer through before they will allow the cycle of procedures to start up. I have a lot of anger over this and it is difficult to let this anger go because I am not the only one who suffers. My entire family suffers right along with me. They don't get the attention they usually do. And let me tell you a 3 year old child does NOT understand that pain is what is preventing her aunt from playing with her the way she usually does. To a 3 year old, I'm just ignoring her. My husband doesn't get the cuddling, discussions, support, etc. that he would normally get because I just don't have any extra energy to give to him. Same for my son, who also suffers in his school work because I can't sit at the table and teach him. Instead he is stuck pretty much learning on his own. My sister-in-law is stuck doing all the cooking, laundry and housework that is generated in a household of 6 people and 4 cats.

I resent that my family members have to go through this. I struggle with guilt, shame, fear, and anger..all of which combine into depression. Thoughts that if I weren't so "broken" I could be a better Mom, Wife, Aunt and Teacher. I struggle with fears that they will get tired of this and leave me. It gets harder every time I have to go through this to recover from the emotional and mental aspects, as well as the physical.

But I am still around and I am still fighting. Right now I am focusing on getting back to where I was 5 months ago. Here's hoping I can do it.