Already the Last Day of November…

Each morning when I wake, I carefully grab my meds, a drink and my iPad and go slowly to my bathroom. Where I try to deal with the intense pain and wait for my medication to help take a bit of the intense edge off. I general, I spend a good two hours here, before I can emerge from my den. Some days I am there for a few hours and then I have to go back to bed, because the pain just will not ease up. I often think, what a life I have! The constant struggle to get through one day, one hour or even one minute. I do my best to listen to my body and do what it tells me to do. If it is screaming at me to go back to bed, I go back to bed. If I fight this, I end up in more pain and have a much more difficult time making it through the day.

Life…. On average I have around seven days a month that are tolerable and I can get a few small things done. All I ever asked for was to have a 50/50 balance. Two weeks that are tolerable! Yet I spend months fighting with the doctors to do more, only to be left with what I have for months on end. Everyone deserves to have the best possible life they can. For some, that means they need all the help they can get and they need medications to take some of the pain away. After years of this battle, it is easy to become discouraged. Then finally, the doctor will do something more. You find more relief and a much better balance, only for it to slowly slip away from you again after a few months go by. This roller coaster of life is rough. It was hard enough before the chronic pain. The one thing I always feared was being in pain. I did not fear death, just the amount of pain I may be in before the actual death took place. Yet, here I am in the roller coaster of a life full of pain! Like my greatest fear came to life. I am still here and I am still pushing onward each and every day. I may only be able to look at the next few minutes or hour, but it am still doing it! Sometimes, we ask ourselves why we bother to keep fighting onward when we are in so much torturous pain. The answer, I think, is simple. We might miss a cure if we did not fight on. We might miss the best day of our lives, if we did not fight on. There is always an ounce of hope in there. If we ever loose the hope completely, that would be the end of our fight. That is when one decides they can no longer fight and give up, maybe even putting an end to the life they faught for years to hold on to. I can see how this can happen. Being in pain is no fun. But I still have the hope, that tomorrow I will wake up and feel great or tomorrow will be the best day I have ever had. Life changes in a blink of an eye, so we have to hold on to that drop of Hope and we Must push onward in this life. Together, we can do it. Everyone needs a support system and for me, this is the only place I have ever found any support what so ever. So I thank you all so very much. Thank you for taking time to read my posts and thank you for commenting. It truly is the one thing that keeps my hope alive.

20131130-114057.jpg

Happy Thanksgiving….

I made it! I prepped everything possible yesterday and someone else cooked everything today for me. The food was very good and I am glad To at least have my small little family here with me. The five of us plus my sons military friend, that had no family, were together today. That I am grateful for!

My low back, hips and feet are in tremendous pain today! I am having trouble sitting here just to post this, so it will be short! Often, I feel like I am going to succumb to this pain. Like, I will just wither to death in the intensity of it all! I feel this way right now. It is so bad I have tears in my eyes. I keep fighting to find a position that is less painful. I jiggle my legs in hopes it will distract my mind! I really just do not know what to do anymore. I have some really decent days and they are always followed by so much intense pain!

Could you pray for me, anything at all, just wish for this pain to ease up, please!

Update:
Last night while in tremendous pain I has stated to my significant other (SO) that I was wanting to eat some left overs from Turkey dinner but I didn’t think I could handle getting everything out myself. What did he do? He got pissy with me and mouthed me, he did NOT help me out and he complained he was tired….. This is what I am talking about when I say how I wish I had a support system. When I am buckled over in pain and crying, no one seems to care. Not that they can really do anything to help me, except maybe be compassionate and help me into bed and get me things if I want something. Nope, just ignore me or yell at me….. I so hate this life!

Today I Have To Bake…

In the life of one with Chronic Pain, Having to complete a task on a specific day is very difficult. All sorts of things factor into my ability to do any task. Today is the day I cook Pies for Thanksgiving. I have four pies to make. I cheated and bought prepared crust to save myself some work. All of the work has to be done from a high kitchen chair. I have had a few good days where I could get something done after my medications were working in my system, so I assumed (making an ass out of you and me) that today would be a good day. I woke to horrible pain and it’s is raining out. Rain almost always sends me into intense levels of pain. It is also cold here with the current temperature being 48 degrees. I have been up for a couple of hours now and on my second dose of pain medication, with the hopes that the second dose will kick in and I will be able to go out to the kitchen and begin my work. First off, I have to bake two of the pie crusts for French Silk pies, then I have to make the Best Ever pumpkin pie and last is a Peach Cobbler type of pie that does not have a crust, but you make a crust type of mixture and dollop it on top. The Pumpkin is fairly simple, but the French Silk is a long time stirring constantly on the stove then whipping it all up. I just have to get my mind over the pain!

Sounds simple enough, right? My back and hips and tailbone are crushing me…. My neck is squeezing the life out of me! My feet feel like they are in a vice grip of torture. Positive thoughts…… Think positive thoughts….. “I am happy and full of life! I will complete all tasks needed without any problems or pain! I am a Goddess! I am the Maker of Wonderful Desserts! I Can do Anything I Put My Mind Too! I AM Filled With Joy and Happiness!” Now I am forcing a huge smile upon my face, feeling the happiness flow through my body….. Ok my mind feels like it is in a more positive place now. Now I just need to keep it all moving in that Positive Direction!

For the week of Thanksgiving, every year, I have the following schedule: Monday – clean fridge and stove/oven. Tuesday – Bake pies. Wednesday – Prepare all food items that can be done a day early, like candied Yams, the filling for Stuffed Celery, stuffing and preparing the turkey so I just have to pop it in the oven on Thanksgiving, etc. Thanksgiving Day – pop turkey in oven, make stuffed celery, make mashed potatoes, gravy, rolls, cook candied yams and corn, etc.

Now, back a few years ago before I had the chronic pain, I had no problem doing this at all. My issues were depression, panic and anxiety. This time of year, starting with Halloween, then Thanksgiving, then my son’s Birthday on 12/18, then Christmas and not easing until the New Year, I always become more down and out since the death of my son in 2003. Then the chronic pain set in, each year has become more and more difficult! This being the 3rd thanksgiving since the onset and the worst one yet. Everyone here says they will help me, but I do not know what to have them do in order to help me. I know I can have them prepare the potatoes and cook them, but everything else needs me in order to come out right. I have been teaching my sons girlfriend how to make several things though. I have never been good at asking for help or telling others how to do things. I have always felt that if I have to tell you how to do it, I mind as well just be doing it! Not to mention, every time I seem to ask for things to be done, they don’t do it, forget or want to do it way later on instead of when it needs to be done! I can’t seem to understand why no one else here can look around and see dust and just dust everything. I told them all that I needed someone with OCD, that needed to clean all the time, living here so I didn’t have to figure out how to get it done and not be in bed crying afterwards! Did I ever tell you how I really don’t like people much? In general anyway. They always seem to cause more anxiety or chaos in my life. Since I was a child I have always just had one or two close friends. Yes, I have social anxiety and difficulty trusting individuals, so it all stems from my metal issues I guess.

So, every day is a huge challenge for me in many ways. Pain is a big problem and I have been trying to not do to much or let things get to me as much as they always have. I can only do what I can do, after all! Then there is the depression, grief, loss, loneliness and so on, that has been there for a while now. Anxiety and panic that has been there in high form since 1995! As if I didn’t have enough to deal with on my plate already, before the chronic pain came in to play. Geeze, I need to stop looking at all that and get back to the positive thoughts! I need to get up and go into the kitchen and start getting some baking done! “You Can Do It!!” On the plus side, it’s chilly out so the oven won’t make the house so uncomfortably hot! Here I go, I’m going to get my chair and go to to he kitchen, wish me Luck and a pain Free Day, please…..

Venting….

Warning: the following post is pure venting. I have a lot on my mind and I need to get it out, so if you would rather not read about my ranting and life problems, just pass this one up….. Thanks!

Marriage, I have been married three times. You would think I would of corrected the issues I had with previous spouses when I married the next one, but oh No! Not me, I just keep on doing it all over and over again. Growing up my parents had four children by the time they were 18 and 19, then 8 years later I came along as I huge surprise. My father worked several jobs and went to school. He did what he had to do in order to provide for his wife and five children. He wasn’t around much when I was a kid and I guess when I was in grade school I thought my brother was my father. He is 11 years older than I am. However, my father always made it know that you did what you had to do in order to provide. Needless to say, I married three times and not one of them was like my father.

Tonight I became rather angry at the fact the bathtub has been leaking and has now become a serious leak. I have informed the spouse of this on several occasions and he had done nothing, so I ranted on about it and how I would have to take care of it myself, then he went and looked up the information and says he will fix it tomorrow. What pisses me off the most is when someone says they will do something and they do not do it. He does this ALL the time! What pisses me off secondly is lying. Let’s just say, he really pisses me off sometimes. He will run out the door to help others, but not put this house or me first, EVER! I have grown rather tired of this crap. What woman doesn’t want to be number one in their mans life? Seems I have always wanted this, yet still have not found it! I was married way too young at age 16 and that lasted five years. I always went for the shorter than I am and skinny guys and he was once of them! He was also a drunk and three years older than me. Then I was married again, but I made that man wait five years before we married. I thought if he wanted it bad enough then he would wait and still be there. He was and wanted to be married, so I married him. He was one year older than I am. He was also a drunk, but I gave him an ultimatum after a few years and catching him sneaking beer to take to work with him. No more alcohol or no more marriage. He quit and was good for several years. He was the opposite of what I was always with. He was tall and big, I thought going after the opposite would change the kind of man I was with. Didn’t happen! Then after 16 years together he cheated and got strung out on drugs and left. Of course, this was three years after my oldest son died in a car accident. Then, One year later I married a man 16 years younger than I am. I never even dated a man more than a couple years younger than me before. He pushed to be married and I felt like it didn’t matter if you made them wait or not so I went for it. It has been seven years now. He isn’t a drunk and he doesn’t call me nasty names like hubby #2 did, but he lies all the time and never does what he says.

I am 44 years old and I am tired of trying to be number one in my mans life. Every single one of my husbands would have sex with me often, then after a few years it would dwindle away to once a month. How does this happen? I see men all the time saying how they can never get sex from their wife, but I can never get sex from my husband, no matter who it is. He does pay a bit more attention to me now that I am no longer over weight, but it is still no where near what it should be. How about at the very least, once a week! But I can be in the mood and he will pull his usual crap of everyone else is more important than I am. Then I am sitting at home and getting myself off. Or he lies too much and I am pissed off. How about just brush your teeth daily so your breath doesn’t smell like ass! He almost never comes on to me and I have always been the kind of woman who wants to feel desired. Our arguments are usually over his lying or not doing what he said he would do or the fact we haven’t had sex in six weeks. I pretty much just try to keep my mind busy and do what I have to do, so it’s like being alone in a lot of ways…..

Remembering Back to My Childhood…

I was thinking back today and it dawned on me that my whole life I have suffered from pain and inflammation. Having your parents tell you that it’s just growing pains, when there is no such thing, was my first introduction to them not believing me. I suffered from headaches all the time. My back and joints ached and I would even walk into walls. If my child was complaining about pain and walking into walls I think I would be concerned. In my teen years my mother gave me ibuprofen for my headaches and I noticed that it also helped me not feel quite so bad all over my body. In my early twenties I would pull muscles easily and sprain my ankles. Right at age 26 I began having migraines. Which runs in my family. My father, sister and nephew also have them. I get a floater in my vision that gets larger and larger until it blocks out most of my vision, first. Then it goes completely away and about twenty minutes later I get a severe and horrible headache where sound and light are horrible and nothing you do can ease the pain. I was at work when the first one hit. I had no idea what it was. At first, I thought I had something in my eye so I kept picking at and rubbing it. I couldn’t see the computer screen and I felt nauseated. I struggled with it and weather I should go home, then it finally just stopped and I thought, “well that was very weird” and I continued to work. Well, for about twenty minutes anyway, then I was hit with the worst headache of my life. I grabbed my things and punched out of work and drove home. The ride was only 5-7 minutes and I thought I was going to die before I reached my home. I took four ibuprofen then went to my bed in silence and darkness. No matter how still I was, I just could not ease the pain. I lived with my parents at this time and when my father came home he told me it was a migraine and that he had them too. Sure would of been nice to of been warned about it and what I could of done to prevent the hours of pure hell I suffered. I made sure I told my children about migraines and what to do! Now as soon as I get the “floater” in my eye, I take four ibuprofen and go to bed. I am able to have a much less severe headache that way. I still, at age 44, get the migraines out of no where a few times a year. When I do get one I usually have at least one more in the following day or two, if not a couple more. They last for hours and then the entire next day you don’t feel right and your exhausted!

When I was 14 years old I had a severe case of Epstein Barr, which is Mono. So severe that I was out of school for months and when I did return to school I could only make it half the day before I had to go to sleep. I have seen several posts from people with Fibromyalgia that stated they had Mono in the past. To make it all even more strange, I had Mono again back in 2006. I did not get as sick from it that time though. I also had Fifth disease in my twenties and it just would not go away. It stayed in my body for months and I was so ill. I was also in college at the time and I literally would have to go to my car and sleep. As a child I had recurrent cases of strep throat until I finally had my tonsils out at age 15 and several cases of pneumonia.

Doesn’t it seem like I had several things that said, “hey, this female has something wrong with her immune system!” My severe chronic pain began after I was beaten from behind. I have also seen many posts on how Fibromyalgia seemed to really show itself after an illness or event. I have always had mental problems as well. Suffering recurrently my entire life with depression, then the panic attacks and anxiety came in to play. I know the mental issues are genetic, because my mother has them and several of my siblings and nieces as well. All three of my children had or have anger issues, as well as my grandson. So am I looking at several disorders or are they all really stemming from one main disorder? One of my nieces has chronic pain and I notice her moods fluctuate just like mine and she finds herself in severe bouts of depression as well. However, her pain began after a car accident.

So many questions and I wish I could find someone that can give me the answers. My pain is controlled about half the time to a level I can deal with, but I have to take all my medication. The other half of the time I have horrible pain and my medications only take a bit of the edge off. I wish I could be in a pain level I can deal with all the time, but I am very thankful for the breaks I do get. The week of my period is pure and utter hell for me. A solid 7-10 days of crushing pain and inability to function. I have about 7-10 days a month where I can function somewhat normally. That means, those days I can get something done, but I have to be very careful to pace myself and not try to do too much. Take several breaks and rest. Most of the time I have a couple hours that I feel ok, followed by a couple hours of crushing pain, which repeat over and over all day. My medication helps, but only for about three hours, then I have another three hours where I suffer until I can take my next dose of medication. When I asked the doctor why he couldn’t give me more medication to cover the entire day, he said I would be asleep all the time. Yet, I do not get tired from my medication. So he is assuming I get tired from it, since many people do. Why can’t doctors treat you fully, enough even, so you can have the most relief possible. I understand slowly increasing medication, but when I am telling them I do pretty well 1/3 of the time, they need to listen and do everything possible to give a patient a decent chance at life. Even on my good days, I cannot function in a normal capacity. I am never NOT in pain, but it sure would be nice to have more relief than I actual obtain. How about shooting for a minimum of half of your life being in the least amount of pain possible. On a pain scale with 0 being no pain at all and 10 being the worst pain you have ever felt, I run on my good days at a 6 and the bad days at a 10 with the general days being a 7/8. I would love to be able to have an average pain scale of 6. That’s all I am asking for!

Life Goes On….

My grandson lives with us. By us I mean my son and I. He a gas his Aunt as well, my sons fiancé. He will be four years old in January and he has a mess of emotional issues. My daughter, his mother, dragged him around for a couple of months and left him with people he didn’t know. No clue what happened during that time, but he has not been the same since. Other than that, he has always lived here.

Yesterday, my grandson threw his tootsie roll pop at me and it bounced off my forehead! I immediately was in tears, that seriously hurt! I have a swollen lump area and it is bruised. Crazy how a three year old has that much power. He has serious anger episodes out of no where. I always explain things to him and he does know what is right and what is wrong. Yet, he looses control in fits of anger and I really don’t know what else to do. He is in a very safe and secure home. Everything is scheduled and he feels more comfortable knowing what is next each day. In his fits of anger he has even ripped apart a fire truck, that I cannot figure out how he possibly could do that. This all scares me…. I fear the teen years! I must find a way to get the anger to settle down.

I have been doing fairly well the past few days. I am trying to be sure to pace myself and also occupy my mind away from the pain. I am working on a cape with a hood for myself. I should finish it in the next couple of days. The temperature is crazy, today is in the 80’s and I had to turn the A/C back on yesterday. I should be able to turn it off tonight or tomorrow. Then next week it looks like it will be a bit chilly. I am glad though, I do not like cooking when it is warm out. My oven heats the house up every time it is on. I will have to be sure to delegate jobs out to everyone so I do not over do it and suffer the consequences. Thanksgiving will be the first dinner I have had in a long time. The cost of food is crazy and I always get what my grandson needs first. I live on pickles and cereal and have lost over 50 pounds. I colored my hair red for the first time ever too. I will attach an up to date photo for you all to see. I was going through my photos for this year and you can see how fast my body changed. I have tried so many times to loose weight and rarely ever did. I guess being in a ton of pain and nauseated often, plus the lack of food is what worked. Or what ever is wrong with me is wasting me away…

I wish I had a good friend near by. I really miss having one! My best friend since age 10 lives in southern, Illinois. We talk occasionally online. I have a friend from college not to far away, but I rarely see her or hear from her. I have tried to make new friends with some neighbors, but they tend to be drug addicts around here and when I learn that I walk away! I have one neighbor that is horrible. Loud and rude and her kids are obnoxious. They came from a bad area and act the same here, instead of trying to better themselves! There is always a bad apple around here. One moves away and another one moves in! I have always only had a few people I let in close to me, but now I really don’t have anyone. I do have my sons fiancé, she is who I go to the store with and we talk and share things, so I guess I am lucky to have her! It is so hard to find someone who can be trusted and doesn’t stab you in the back. My friend from college, that I put in a position she wanted, stabbed me in the back and took my job from me. Yet, I do still talk to her. I think she feels so guilty about all that, that she can’t let herself me close to me again. I also think she wonders how I could possible still be friends with her. That’s just how I am! I have always stood up for the under dog and I have always helped my friends in any way I can. I also feel that all things happen for a reason!

20131118-123726.jpg

Pushing Onward…

I have had two decent days! I pushed positive thoughts through and I even tackled some dusting today. I guess I did a bit too much though, because once I sat down my pain seemed to grip me in every single area. Then the neck pain became so bad that I keep trying to stretch it for some relief and soon after the horrible headache I get in my temples hit. I threw everything I had at and it still crushed into my temple and through my jaw and in my neck. I then became very nauseated, which happens when the pain gets to be way too intense. Strangely, I crave cinnamon toast when this happens, so I made some and ate it, which seemed to calm my nausea a bit. I had to give in and take more medication and then I finally caught a bit of a break from the intensity. It is much more tolerable now, but still there. Which is why I am still awake at almost 3 am! My left hip and back are jabbing me as well, all because I dusted one small room!

I have noticed when I have a more tolerable pain day, I tend to do too much and pay for it later on that day and the next. I have been making sure I pace myself and take breaks and only do one thing, yet I still pay for it. What seems like not very much, takes me the entire day, and is still too much! I have limited myself to one single chore in hopes that I can avoid the dreaded flare of pain. Hmmm… I am a bit confused on what to do now. I have to get something’s done because no one else will do it. Things get way dustier and messier than I like and it does effect my moods, but I made sure I paced myself and did not attempt to do any of the chores while in intense pain. I am not sure what I can do without paying for it later. Do I do half of that chore next time and see how that works out? I can’t believe how I used to be able to clean the entire house in one day, take care of three kids and a husband, cook all the meals and do all the laundry. To make matters worse, I am allergic to dust! And I already do as much as I can from a sitting position. Bending is the worst for me, it always sends me into stabbing pains from hell!

When the pain gets that intense, it is almost impossible to think a single positive thought! You are suffering so much it consumes you. I quickly read a few positive thoughts I had written down and then worked on some crochet I have been doing in order to occupy my mind. It was difficult to do with my head throbbing so severely, after a short time I had to put it back up and go get more medication. Then I laid down and tried deep breathing, which helped me get through the 30 minutes it took to finally catch a break from the hard edge of the pain. I know for a fact, that occupying your mind helps with pain. But there are pain levels that just will not let you focus or do anything at all. That’s when you have to focus only on your breathing. Slowly in and slowly out!

I made it through another day. I am now going to try to get some sleep. I am sending out positive thoughts and praying that tomorrow is a lower pain level that I have had tonight! 😇