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.

Quiet

I just finished filling out more stupid social security papers. This time they sent me a paper about fatigue. It just seems like the same old questions over and over again. I don't know how much more information they need about my conditions. I sure don't understand why they didn't just send all the papers together. Oh well. This is a stupid game that they make you play. Ironically, they didn't play too many games when they deducted money out of each of my paychecks through the years. I expect to be denied as I hear that is what they do to everyone the first time. I know that I have a ligit case to get it but I have no choice but to appeal when they do. I don't expect to hear anything soon anyway so I will not even go there yet. I imagine when we have been kicked out on the street and are sitting on a corner begging for food they may pay some attention. Wow, that was negative. Sorry. My husband received a paper from them today for him to call the my worker and talk about my conditions. At least they are gonna talk to someone that knows all about it.

Today is another day. What can I say? I am pretty exhausted today and was up and down all night last night. I did manage to rest some. I am still in my bathrobe. I need to take a shower but don't really have the energy to do that. I am just trying to remain in this quiet place that I have here in my bedroom with minimal pain at the moment. When I start hurting again I will get up and try the hot shower routine.

I miss working. I felt so good about myself and even though my job was stressful, I was a contributing member of society. I don't feel important anymore. The days just seem like I am waiting for something to happen. Sometimes they are blurred with attempts to get rid of pain. Sometimes they are quiet like right now...not peacful but, quiet.

Peaceful Sunday

I seem to have less pain today. I am sure it is because I was able to take all four of my hydrocodone yesterday and slept better also. I slept for two hours at a time for a total of six hours of sleep. I was quite drowsy this morning but unable to go back to sleep. This has been a nice day at home alone with my husband. We have watched football and he cooked supper for us. I enjoy spending time alone with him. I will need to go tomorrow and have the x-rays that the doctor wanted me to get when I did the MRI Friday. I didn't get those because we would have had to wait and my husband had to get to work. I also was in too much pain and wanted to get back to the truck to bend across the seat with the truck door open. That position seems to really give me relief when I need it. I spend a lot of time leaning over the kitchen counter...wow, I think I have been there about five times today. Amazing what positions you will put yourself in to get relief...seems like just a normal part of my day these days. I am wondering if I will hear anything tomorrow about the MRI. They did say that it would be a few days, so I will not hold my breath. I am just anxious to find out what my next step is and get some relief.

Take Another Pain Pill

I sit here alone, again. My husband is out with his family. My children are at work. I would have went with my husband but pain steals social interactions from me once again. At least I was able to get my pain medication back on track again this morning after my husband picked up my refill. How horrible to have to think about when you can take another pill everyday. I just wanted to post. Sorry it is so gloomy. My mood isn't that wonderful right now. I will try to spend some time this evening thinking of things that create peaceful thoughts for me. This pain is lonely.

MRI

Well, today was the MRI. It was with and without contrast to assure that they could differentiate between scar tissue from my previous back surgeries and new issues. It was very difficult to remain flat on my back in one position while they completed the MRI. It was extremely painful and I ended up with some spasms. My toes and fingers were numb and I required assistance getting off the machine when it was over. I guess it took about 45 minutes total. The tech told me it should take about three days for my doctor to receive the results and that I would have to follow up with the doctor for a copy of the results if needed. I feel bad today. I will not spend time detailing why but I did want to post as I have made a committment to myself to do so daily. Getting out of the house today was nice. The fresh air and sunshine did lift my mood for a moment. I will try to get in bed now and see if sleep will be possible. Hopefully I will rest some. I am exhausted.

Acceptance of the Unknown

I had a really bad day of pain. I feel okay right now. I have the effect of my hydrocodone on board and my elbow and wrist warm wraps on. I slept until 2am last night and back to bed about an hour later to actually sleep until 6am. I believe that is the longest that I have slept straight in awhile now. Of course, the morning pain moved on to the afternoon pain. Finally, an hour ago I had to give into hydrocodone again, knowing that I will be completely out tomorrow until my refill on Saturday. I try to move as much as I can while I have the pain relieved. I just do not want to lose muscle mass to this process. I can't help to ponder what it will be like when I am fifty or sixty.

I realize that I have not talked much about who I am or given a timeline of medical issues that bring me to this point. I will spend some time on this post with those topics and periodically through other topics. I couldn't possibly do that in one sitting because of pain issues so I will gradually include those topics in my posts.

Where do I start? Hmmm...I am over forty and a mother of an adult daughter and son. I have been married to my husband for about twenty years. My daughter is from a previous marriage and her father passed away with lung cancer after we were divorced. I am a sister, daughter, aunt, neice, granddaughter, cousin, friend, and a registered nurse. I have worked as a helper in a trophy shop with my father, as a waitress, a manager in two resturants, a dancer in a bar, a cashier in a grocery store, and of course as a nurse. In fact, I have worked at some job since I was a child working with my father in his business. The only time of my life that I have been out of work was when I was pregnant with my daughter until the fifth week postpartum and I had the pleasure of remaining at home with my son for six months. I have never been lazy. I have always been driven to do something. I may have worked in a lot of different jobs when I was younger but I always had a job. I feel my work history helped to create a very diverse registered nurse. I am a good nurse and am very proud of the care that I have provided my patients with over the years.

And now I am out of work. This is the absolute hardest transition that I believe I have ever had to make in my life. Although, I have gradually been able to work less and less over the previous three years. This year I have made 1/3 the amount of money that I made per year full-time as a nurse. I did only work up until the end of September. I just had to stop trying to do something that was destroying me further physically and emotionally. I really could not do it anymore. I decided that it was time to give in to what I had struggled to ignore for the past three years. I pushed as hard as I could push. I ignored the obvious signs of the seriousness of my illnesses and my pain. And here I am ... wondering who am I now.

Counting the Pills Away

Here I sit, as darkness has fallen outside, wondering how many pain pills it may take to get rid of enough pain that I may sleep tonight. My left arm is really just killing me today...a deep dull, throb that doesn't stop. My back is the usual and my hands burn. I will not type much so I can preserve what tolerance I currently have. I have counted my pills and it looks as if I will be short two pills to make it to my refill on Saturday...and the cycle will begin again. I have an MRI with and without contrast on Friday and since that is the first one that I have had since my last back surgery, I fear what is new. What are they going to want to do to me now. What promises are they going to make? I did well in the beginning after the surgeries but this time I am not. I am not sure this body can go through that again. I fear this heaviness in my upper thighs. I know that isn't a good sign. I will try not to think about it for now and concentrate on getting myself prepared for rest tonight. I really hope that I can sleep well. I wonder if some of my problem is the knowledge that when I do sleep I will wake up in pain. I do believe that has a tiny part in my insomnia. If I actually do manage to relieve the pain well enough to rest for a few hours, I wake up to the reality of full blown pain and the stiffness. I have to slowly roll my body, listen to the cracking, and get to the bedside table where the hydrocodone is at. I really need my doctor to help me find a better way to manage this pain. This has robbed my spirit.