Day 6, Struggling with Negativity…

The weather today here is very windy, cloudy and cold in the low 50’s. This kind of weather tends to make it difficult for me to be positive. My pain levels were very high yesterday and last night. I had to make myself reassess what I need to be doing while I am here and look at the negative thoughts that were consuming my mind this morning.

At first, I had my brother and one sister came to mind. The negative things with them, so I knew I needed to look at that. It is all in the past and I cannot change any of it, but I can acknowledge the emotions and remind myself that I need to not have any expectations of other people. I removed the connection to them from my life, so I would no longer be negatively affected by them and I can choose to remember only the good things that occurred in those relationships, while not obsessing on all the hateful things they did.

Then, I realized I was greatly bothered by a statement my mother made yesterday. She had stated to a friend, in front of me, that I am not old enough to live here. Even though I am the same age my sister was when she lived here and my father told me I could live here if I chose too. I have to remind myself that she was most likely stating that I could not buy a home and live here that way, but I was allowing it to negatively effect me. Feeling that she was saying she did not want me to live here. None of this should be an issue anyway, since I really do not want to actually live here, just be able to get away to here yearly. So, why is it bothering me so darn much? I guess it is the thought that I am having, that my mom really doesn’t want me to be here. However, that is all in my own head. This is what I need to work on!

I have repeated my affirmations and I am faking it until I make it, like I am supposed to be doing. I also need to be taking an hour every day to go into a deep meditation. I did a light meditation yesterday and I really need to be doing a deep one daily. I have to get back on track with the plan I had in place. I wanted to eat very healthy while I was here, because I could and I have not done a good job with that either. I have ate everything available instead of making proper choices. That would be due to not having much food back home and suddenly having food to eat here, so that is expected. There is nothing wrong with that, I just need to refocus.

Our thoughts really do play a huge roll in how we feel mentally. Dwelling on negative things or stuff from our past, is much like a domino effect. It sets off a long line of negative thoughts and emotions. When we can recognize this, we can choose to replace the negative thoughts with positive ones. Just be sure that you do not stuff the thoughts or emotions, because stuffing them only causes them all to explode at once. Instead, take a look at the thought or emotions. Ask yourself what you are really feeling. Then remind yourself that you have a choice wether or not you allow it to negatively affect you. You see the thought or emotion, then feel it and assess what it really means to you, then you allow it to move on and replace it with positive affirmations. This does work, it takes time and effort, but you can work through things this way. For me, when I reflect in the morning after I wake up, I usually find that my thoughts or emotions are showing me what is really bothering me when I did not realize it was. Stuffing them back down only creates a huge explosion of it all to emerge at once and you will not even know what is really bothering you when this happens. Be gentle to yourself, reminding yourself that all is ok and wrap yourself in your own love. At the time, it may feel like a darkness that may never leave, but when you really acknowledge each thought or emotion and choose to work through each of them instead of stuffing them, you do find yourself in a beautiful, sunny place with darkness no where to be found………….

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The sunset two nights ago……

The New year… 2014…

Well, I made it to a new year again. My pain levels are horrendous and I am having to lay in bed more than not. The cold and rain has really amped up the pain levels. I have to lay in bed with a heated blanket under my sheet. That is the only way I can warm my body up at all. I feel like my bones are frozen and stiff, Aching flowing through every fiber of my being and deep harsh pain gripping me without an ounce of relief.

I called my doctors office today. I needed a refill for my short acting pain medication and I had to inform them that the long acting medication is not covered on my new insurance this year. My doctor is out until Monday. The nurse did call me back a short time later, she said she spoke to my doctors PA and that he said they could put me on a RX that I was already on the last year and we had stopped it due to the rashes, plus it wasn’t helping. Not only that, but he also said they would have to lower my short acting RX. I am so tired of this idiot having anything to say with my case. I told the nurse that what the PA said made no sense. How I was on that other long acting RX for a year and it was stopped last month due to the rashes and switched to what I have been on for the last month plus I had been on my short acting dose for over six months and I am still suffering in too much pain. I told her to wait until Monday and speak to the actual doctor. I already wasted an entire year seeing his PA who never listened to me about the lumps along my tailbone and how they have grown larger and the pain has increased with them. I demanded to see my actual doctor last month and he ordered an MRI to check for cancer. I can only hope that the year I wasted with the PA won’t be the death of me. I refuse to see that PA ever again, he is rude and just plain stupid. Also, if I do not get anywhere in February when I return for my MRI results, I will be making my next appointment with the neurologist whom I originally saw two years ago. That neurologist told me if I was not better in a year to come back to see him. I attempted to do that a year ago, but my doctor decided to actually see me then and I gave him a chance to figure out what the hell was going on with me and to get some control on to the pain. So, I will see him next month and if nothing is done to understand the problem or to help this horrendous pain, I will make the appointment to see the neurologist again. At the very least, he will look at my scans himself and he tends to see things that others miss. Something is seriously wrong. Something separate from my Degenerative Disc Disease, Arthritis, bulged Discs and pinched nerves. What began as horrible pain in my lower back on the left side, has now expanded to include my tailbone, hip, butt, legs and feet. Just getting through one day is all I can muster. It is so hard to get through the day, I hurt too much and I have had to resort to laying in bed. That is not a life people! Come on now, do something about it! I have looked up what long acting medications are covered on my RX plan and there are only four of them. None of which last a week, like what I am on, but there are two that are 12 hour. So, I say go to the 12 hour one twice a day and keep my short acting the same until we know how well it will help me.

It is so messed up that we, the patients, have to dig and search for possible ways to help ourselves and then we have to fight with our doctors to even try the medications that may or may not help us. I am tired, all the time. I just don’t have the energy to fight for anything. I force myself to eat something once a day and I have given in to laying in bed since that is the only way I can get through the day. I say, what ever those lumps are on my tailbone, take them out! They are obviously causing the increased pain! Maybe then, I will go back to dealing with the usual pain and maybe then the medications I am on now will be enough! Just do something and do it quick. I had my MRI on December 26 and I couldn’t get in to see my doctor until February 3. That’s messed up! Sometimes when I go for the return visit for my scans, they can’t even find them or they have not even been read yet. There are two places here for people in pain. I went to the other one first, per my doctors recommendation and he was horrible. That man tortured me on purpose and treated me like I was a drug addict, when I have never been even close to one in my life. My doctor then sent me to this place, two years ago. At least they try to help me with the pain. I’m running out of time though. I feel it in ever ounce of my being. It’s running out fast. Whether it is cancer or not, whatever it is, it has sucked the little bit of life I had out of me. I really don’t want to show my ass when I go to see my doctor, but I am going to have to stand up and demand something be done. I am regularly drug tested and I always pass and it shows I do take my medication. So why do I still get treated like a drug addict by many of the nurses and PA’s there? I get enough negativity from to he people I live with, I need my doctors to be positive and really listen to me. I have always been able to feel when something was wrong in my body. I have let this go on for far too long….

Beautiful weather today, but pain is intense…

Today has been absolutely gorgeous! 77 degrees with a nice breeze. I just love the Fall and temperatures in the 70’s, but for some reason my pain goes through the roof at the same time. I still have the A/C on because it’s going to be 90 again in the next couple of days and it gets a bit to warm in the late afternoon which heats the house up too much. However, the issue is the fact that every year my pain gets so bad in Fall that I end up in a wheel chair. This does not make sense to me. The beautiful weather should help keep my pain to a minimum. It’s not rainy or cloudy out so it has nothing to do with that. The pressure is good. For the last few years my pain has been so bad that I have been in a wheelchair for Halloween. I do not want to go through that again this year. I just wish I understood the correlation between fall and my pain. I am in the south and it’s so nice, weather wise in the Fall. I could see my pain increasing due to it being cold or hot outside. So what is it?

As I sit here typing this my left hip is robbing in deep pain. My lower back and tailbone feel like they are crushing into me. A deep in the bone pain, much like a ice cream headache, is flowing down my left leg. I wish I could make this hell just go away!

I love Halloween! Every year we decorate the back porch and set up a scary walk down our driveway onto the back porch where the kids get their candy. Every prop I have I made myself. I have always loved doing this and after my son died, I did Not do Halloween for several years. Each year people say how they appreciate our efforts in creating a haunted walk, because no one does it anymore. So many kids cannot go to a haunted house, because it costs $20 or more to get into one here. I have always liked to make it special and scary. I remember being a kid and there was always a scary haunted house, no matter where I lived. It takes two months of a little bit here and a little bit there to make it all happen. Just being able to get candy to pass out has to be done in very small amounts over a very long time. Yet, we always do all we can. Then I became ill and had the chronic pain over come my life. Three years now. If not for the others here, I would not be able to do a single thing for Halloween. I am grateful for the fact we can still make it a special day.

I have lost so many things I love in life because of this pain. There has to be a way to make my life a more enjoyable one. I go to my appointments and I do everything the doctors tell me to do. But they have not tried to correct anything. They insisted on a dozen injections that never helped and since then they just see me every two months and they do not seem to even care or hear what I am telling them. I know there are other therapies out there to try. How do you get your doctor to try them? I have begged for the spinal cord stimulator in hopes I could just not feel all this pain anymore, but they refused to do it. I want a real shot at a decent and enjoyable life! Everyone deserves that…