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!

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.

Radio Frequency Procedure

Warning: Graphic Image and Specific Language about a medical procedure. If you are upset or bothered by reading about or seeing a picture of said medical procedures being done! then please do not view this post.


For those who may not understand what radio frequency procedures are, I asked for a picture from the flouroscopy (almost like an x-ray) view so that I could scan it in and explain about how it is done and why it sends me to bed for a couple days after it is done, as well as why it helps so much making me willing to keep repeating such a hellaciously painful procedure. As well as to discuss it and other topics with my son.

I will be referring to this picture:

You may need to click the picture to view it full size and read the labels.

You can easily see the main part of the 6 inch screw that lays horizontally through my left sacroiliac joint. It starts near the hip (I can actually feel the screw head under my skin if I press the right area) and goes through the entire illeum, across the broken joint and ends about halfway through my sacrum. This screw was supposed to hold both sides of the SI joint together while it fused to solid bone. It did not fuse so the screw now acts to stabilizing my sacrum so it can't move as far as it is capable of. The area underneath the ridges of this screw is my sacrum itself.

In the lower left area of the picture it gets pretty dark. This is because the surgical steel plate and screws cast a shadow on flouroscopy (they do the same on x-ray and cat-scan). The plate can be seen though, along with the screws that go back to front holding the plate in place.

For background knowledge, the plate and all the screws are loose. (so not only am I permanently screwed, all my screws are loose too! ROFLMAO) There are visible spaces around the threads and length of all the screws on cat-scan review. It is these spaces that have allowed the affected bones to be mobile again. When I walk they grind together and you can sometimes hear them pop, crack, or snap very loudly. Also, the second attempted fusion resulted in pseudoarthrosis which is a thin bone covering over an attempted fusion. An uncommon side effect that results instead of a complete solid fusion that would have removed the SI joint and left the illeum and sacrum connected as one solid bone. This thin covering makes it appear the fusion is solid on an x-ray, but the spaces of the original joint are still visible on cat scan {as cat-scan takes slices, that can see behind the bone covering}. When this covering broke, and a subsequent fall was endured (which caused further fracturing of the bones), the end results is a permanent compound fracture of the left SI joint and bone fragments are floating around. It is the plate and screws that make it possible for me to continue to walk, but since they are loose the bare bones do grind together and new bone fragments can be chipped off if I were to further injure the area through falling or a car accident or something.

Ok..radio frequency step by step.
I am brought into the flouroscopy room at my local outpatient surgical center. I am laid face down on the table and prepped. A grounding pad is placed on my right thigh when they do the left side. (everything is the opposite when they do the right side) Iodine is wiped over the area to be treated and sterile drapes are placed over my body with the opening in the cloth showing the lower back and pelic area on the left.

I had an IV for the first time this was done, with mild sedation using versed. In some people versed makes them very emotional. That is the reaction I had. When I started crying from the pain, I could not control it or stop even when the procedure was over, and instead of just crying for a moment or two I was sobbing (I hate crying from pain btw). This caused a nurse (who was later let go) to insult me and call me names. As a result the next 3 times I went through this procedure I did it without an IV or even mild drugs as that nurse (who was still there for the next 2 out of 3) told me only Versed could be used (Which was wrong by the way). However the last time I had this done (Aug. 2009) the nurse assigned to me asked me why I did not want an IV and medication. I told her how versed affected me and that I was told it was the only medication they could use, so I chose to suffer through it rather than be humiliated. She was the one who told me that versed can do that to people and that they can use a different drug instead. She told me to give it a try with the different drug and see if that helped at all. It did. The procedure still hurt like hell but it was not as bad as it is when I am not medicated. So this time I was again given an IV and a low dose of medication right before the procedure started.

For the first part of the procedure only my skin can be lightly numbed. The doctor then proceeds to place each needle with the assistance of the flouroscopy. This is to help ensure proper placement of the needles, and to ensure they are not going into areas known to carry nerve roots for a mobility nerve (sciatic nerve and its roots which are present at all lower lumbar disc levels).

The needles for L4-5 and L5-S1 hurt the most because it is those areas that have a degenerated disc and a herniated one (in that order). There are areas of scar tissue and bone fragments which make it difficult to just slip the needle in. This is further complicated by the presence of the surgical steel screw. One needle goes above the screw, but the other one has to go underneath the screw. This takes some maneuvering on the Dr's part. While these needles were being placed all I can do is cry and try to breathe through the very sharp pains that are shooting across my entire lower back and pelvis. It hurts a great deal.

Once all the needles are placed, they must test each one. This means they send the waves through the needles, one at a time. This stimulates the areas and thus exacerbating my pain. This is the part that gives the reason for not numbing the entire area first and the reason I must be awake for these procedures. As each needle is tested, it is my job to feel the waves and where they cause pain. If I can't feel the waves, they adjust them until I can. In addition to that I must be able to tell them if I get any sciatica type symptoms. This means any numbness, tingling, sharp pulling sensations, or sharp pains going down my leg. If those symptoms are there, the needle must be withdrawn and replaced because those symptoms mean the waves are hitting the sciatic nerves.

Once all the needles are in the correct places and tested, they numb me. But it is not completely numb. I can still feel the waves as each needle is activated, run for a little while, then move on to the next one. The only difference is it is nowhere as intense and sharp a pain as I feel during the testing section. Part of the reason is that I am numb, but because the waves are now at the correct frequency (thus stronger) I can still feel it. Again, L4-5 and L5-S1 are the worst. Once the proper time has passed for each level, the needles are removed and a dressing is placed. I am moved back onto a gourney and into the recovery area. This is where I am watched for about 20 to 30 minutes, then sent home.

Radio frequency procedures damage the nerves around a painful area, thus preventing them from sending pain signals to the brain and lowering how much pain the patient feels. I call them middle nerves because I can never remember their proper names LOL. These are not the surface nerves that allow you to feel sensation through your skin. Nor are they the nerves that lay near your bones and handle movement, bladder and bowel control etc. (Sciatic nerve in lower back and pelvis). The nerves being deliberately damaged lay in between those two areas (surface/skin and mobility nerves near bones) hence I call them the middle nerves and usually explain them to people as the filling inside a sandwich. This scarring interrupts the pain signals that, in a chronic pain patient like me, are constantly being sent to the brain.

The longer a person is in pain, the better their nerves and brain get at feeling that pain. (I guess practice makes perfect is just as apt for the human body) The nerves become overly sensitive and send pain signals to the brain constantly. The brain gets better at reacting to the pain signals received from those areas because the more often it works, the better the brain gets at noticing it. In a chronic pain person what this means is that they will feel pain constantly, and even minor fluctuations in that pain are perceived as more intense by the brain. This can also distract the brain from noticing minor pain relayed from different areas. This is part of the reason I do not always feel the muscle aches that accompany doing too much right away. Instead I only feel those after I have stopped doing whatever it was, sit down and relax for a while. It is while I relax that my brain starts noticing the signals from other areas, as well as from the injured ones. This is why I clean house in 10 to 15 minute bursts, alternating with sitting down for 10 to 15 minutes. It is those resting minutes that allow me to guage my pain level and realize that I am reaching my limit and must stop even if I am not done.

The scarring/burning of the nerves lasts for quite some time. I get about 9 to 10 months of lower pain levels out of it. Some patients can get up to 2 years from this procedure and apparently a few lucky people get permanent results. But for the majority of patients these nerves do regenerate and when they do the original levels of pain return. For some it happens quickly, for others it happens over a period of time. I am one of the latter people.

Side effects vary but for about 2 weeks after the procedure I experience odd sensations, which are signals the damaged nerves are sending out. I get pins and needles sensation throughout the affected area, these little zinging shoothing pains that shoot every which way a few times an hour, a burning or heated sensation in the treated area, or a sensation of tingling as if I had a tens unit on. These sensations start out frequent for me and lessen over time, usually stopping within 2 weeks. They can be greatly alleviated through the use of medications such as Lyrica or Neurontin during those two weeks.

This is what was done to me on Monday the 11th. It will be repeated on the right side on the 25th. In addition I will be scheduled to have the procedure repeated two more times, this time to the sacroiliac joints themselves, which I erroneously thought was already being done and it wasn't. I'm not looking forward to the procedure on the left SI joint, which is the broken one, because I am expecting it to hurt even more than the left side of my lower back does. I am expecting that because it is the part of my body that causes the most severe pain. But I will get it done because I know how much relief these procedures do give me, and by adding the SI joints it is possible that I will be able to lower my pain medication for the first time in the many years I've been stuck having to take such medication on a daily basis. Ohhhhh I am really hoping and praying that this will be possible!! It is also possible that with the pain of my lower back and pelvis under much better control, that I will be able to do a lot more physically and thus rebuild some of the muscle tone I have lost due to immobility. (and maybe lose a few pounds too!)

I originally had the picture printed out to show to my son and give him a little science lesson on nerve conduction, bone structure, and the issues facing a chronic pain patient such as dependency, tolerance and the differences between those two things and addiction. There is a lot of emphasis being placed on prescription drug abuse. As I have stated in older posts, these political views even showed up in his science text book for the 6th grade. The book flat out stated that anyone who takes pain medication on a daily basis is an addict, that there are no medical conditions that cause chronic pain. With those messages coming from so many different sources (friends, family members of his friends, teachers, school books, television, newspapers and radio) I was expecting him to eventually have doubts and start wondering if I was an addict or not. So I took the opportunity of homeschooling and the time to explain these things in detail to him.

So we spent some time discussing tolerance, dependency and addiction and the differences between them. We spent some time going over the behaviors that are present with an addict and how they differ from a non-addicted chronic pain patient. The biggest one being: no addict would put themselves through the hell of such painful procedures as radio frequency, steroid injections or more because their goal is not pain control, it is to get high. Whereas a chronic pain patient will attempt those procedures (and repeat them if they work) because their goal is pain control, not to get high. I didn't even have to point that out to him, he got it on his own. He understood that I continue to suffer through these procedures because they help me and they make it possible for me to deal with my pain without having to increase my medication every year or so. (I took the same dose for 6 years before the pain got so bad that I had no choice to but to increase my medication, even with the injections and RF.

So that is how radio frequency is done on me. For more information about this procedure here are some links:

http://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain

http://www.medscape.com/viewarticle/718292

http://www.neurotherm.com/

http://www.webmd.com/cancer/tc/radiofrequency-lesioning-for-chronic-pain-

I do feel lower pain in the treated area, but since it is only 1 area out of 4 it isn't enough to affect my ability to move around or to be out of bed for more than a couple hours at a time. Still it is nice to have a lower pain level in that area and I am looking forward to how it will feel when all 4 sections have been done.

For now I am still stuck mostly in bed because it is the most comfortable place for me to sit, and still stuck with pain levels at a 7 or 8 on a daily basis. This high level makes it a lot easier for me to hit a pain crisis simply by doing normal every day things. So for now I am still having to take it extremely easy with small windows of freedom (freedom meaning I can sit at the dinner table for an hour or half an hour, or sit in my recliner and watch tv for an hour or so, or take a shower without my shower buddy [read hubby] and more.

I hope this long rambling disjointed explanation of radio frequency helps you understand things a bit better. If you hung in and read it all, thank you!