Defeat

I know I haven't added in a few days. Here I am. I have had some bad days lately. Today I visited the doctor that ordered my MRI and spine bending xrays. The results are worse than I realized. It is quite scarey. It is very depressing. I have damage even up to the T11-T12 area. In fact, there is disk protrusion there with loss of disk height. Disk height has noted loss in the L5-S1 area also. L3-L4 was noted to be mild broad based disk bulge flattens the ventral thecal sac. L4-L5 level said broad based disk bulge is present with superimposed small central protrusion, with annular tear. that impresses the midline ventral thecal sac and minimal right facet degenerative change is present with a small synovial cyst present at the right facet extending laterally. L5-S1 said broad based disk bulge with a superimposed large right eccentric protrusion resulting in a right lateral recess stenosis with mass effect of the right S1 root. The impression was Degenerative disk disease predominately at L4-L5 and L5-S1 with the greatest at L5-S1 where there apprars to be a current right eccentric disk protrusion causing a right lateral recess stenosis. My x-rays of my ankles showed spurs in ankles bilaterally.

So what did I hear from the doc about this? Well, the doc didn't bother coming in the room. The NP came in and sat down with me, started telling me that there was no easy fix to all of these problems. She said that they could maybe get rid of some of the right leg pain by draining the synovial fluid from the cyst and doing an epidural steriod injection. She stated that my two areas of height loss would require surgery to fix but that since I have arthritis those areas would probably not heal correctly or damage further. She then said she was going to ask the doctor something and that she would be right back. Another nurse came in with my paperwork saying that I would be contacted by someone about my steroid injection and synovial cyst drainage after the holidays. WHAT???? My first question to her was about if anyone was going to explain this to me before they decided to do this. She handed me a piece of paper with instructions. I asked if anyone was going to do anything about my pain. She said that my referring doc (Rheumatologist) would have to do that and that they would be sending the paperwork over to them. Out the door I went. I am angry. My increasing amounts of pain have been ignored. It isn't like they don't have proof that I have a problem. So tomorrow I will play the phone game with my Rheumatologist's office nurses who will never call back. I will probably need to come in to see someone (after a four hour wait) and pay another doc 40 dollars to 'talk' about what we need to do about this pain. This is just totally out of control. There are drug addicts walking around with nothing wrong with them and getting more pain medication.

Outside of the pain medication issue I am feeling pretty sad and defeated. I try to consider what my pain is going to be like in 3-5 years and how I would even tolerate it. Even if I am given medications strong enough to help it, do I want to walk around like that...dependent upon a chemical substance that I have to beg to get from a doctor. And my mind has to stop and wander off from that. I cannot fathom the thoughts of more pain. I am sick of pain.

I will elaborate more on the game social security is playing in my next post.

Snap and Pop

Oh yes, it is after three in the morning. I lay down in bed and try to sleep but it is not going to work. I had to take my hydos (a couple of them actually) to get out of the really bad pain earlier and I fell asleep for a few hours. So now I sit here hearing and feeling the snaps and pops as I move a hand or a foot. I have to say that they feel better now, somewhat anyway, as much as can be expected anyway. I just hate not being in control of a routine for sleep.

This pain is crazy. It amazes me how I have dealt with it this long. Seems like yesterday that it started but it really is all just a blur of when since it so gradually esclated to this point. I try search my memory for first clues of what forcasted this disease process. I try to figure out the different pains that I feel and label them accordingly while asking myself, "Is that the rheumatoid arthritis or the degenerative disc disease". Of course, I spend time wondering if my Bipolar disorder plays a role in the pain or of my feelings about the pain. I am just totally consumed by this process. Yeah, that's what I will call it, "This process".

So why do I spend my time consumed with trying to figure out pain and label the pain. Why does it matter that it has a label? I guess to make the doctors happy or to suffice my family with a title to what is wrong and why I have applied for social security disability benefits and why we lost our house when I could no longer work. A title to please the DEA when my doctor continues to prescribe me Hydrocodone 10/500 four times a day. Something to satisfy my own mind that I need for sanity maybe.

I've spent the past three days reading the boards on a website about chronic pain and the suffering of people all over the world. I thought it would help me some to know that I was not alone. I mean, I knew that I was not the only person suffering but it helped me put some of my thoughts and feelings into perspective and at least move out of my world for moments of time. I guess the surprising realization that I had was that there are people being stigmatized everywhere for being a person with chronic pain. I was amazed by the magnitude of this epidemic. The stories that I read over and over again pointed to thousands of people that could not get medical professionals to treat their pain appropriately. All of these poor souls left to be under treated, or untreated, and suffer in agony.

As a medical professional myself, I remember the patients that would want every pill coming to them. I heard the other nurses label patients 'med seekers' or 'drug addicts'. I actually remember thinking those labels towards patients that were mine periodically (and feeling horribly torn about it). I remember feeling frustration about a person's pain that seemed to be difficult to treat but I never withheld or refused to call a doctor and I always made sure that I remembered what I learned in nursing school, "Pain is what the patient says it is".

I know that there are so many people abusing drugs in our society but something has to be done to assure that our doctors are not afraid to treat pain. We cannot stigmatize people with chronic pain and realize that we may not actually ever see on a test result scientifically of why that person feels that pain. I find myself in fear of this new chronic pain patient role. I know the obstacles that face me. I am scared of them. I pray my surgical scars on my back suffice.