I know I blab on about all the symptoms I suffer. I rant about how I wish it would all go away but right now, as I still suffer from those, I also suffer even more from the emotional side. It is so brutal on your soul when you are unable to do much of anything physical but for me it the worst part is the fact that I am unable to work. This has been weighing heavy on my heart ever since the wedding planning began. It has weighed heavy on my heart before like when Richie went off to college. Mind you, you would think that because we owned a small business we would be able to pay for our child's college education, wrong. Owning a small business has drained us to the gills, like a fish swimming out of the water, you know the kind if you have ever fished and held a fish in your hands the gills going crazy as they try to find water to get the oxygen. I am not complaining at all, really I'm not, so far we have been able to stay afloat and provide jobs for others along with Rich. With this economy jobs have been cut, it is inevitable. The astronomical costs of running a small business that has a lot of expenses has wore hard on us but we keep plugging along. Along with everyone else the crunch of this economy has been felt on the home front too. We continue to thank God for all we have and do the best we can with what he has given us.
I am struggling very much the past month with the fact that I am unable to help financially. I know I said I was back on the work front helping Rich at the office but it still is not a real job. It is my husband saving me from my own madness, like he always does. This week has been brutal for me. When I get like this I feel so worthless. I don't know why because I had a very busy week helping others, something I am a master at, but it isn't the same. If you know me I am a very giving person so I am not complaining about that at all, it is more of the self-worth part of the picture. I watch others who are able to have a "normal" life and I still long for that. I watch people take it all for granted. It really can wear on a person who is ill. I can't say I feel sorry for myself because I don't, I think it would be better put, I feel sad for myself. It pains me when everyone is out in the world living a life while I am stuck in the mud so to speak. I know only I can change this but it isn't that easy. If I over do it I pay so I try to take it easy, take are of myself, and it leads to this. The real world will not understand this at all.
Last night I finally broke. I cried and talked to Rich and for some reason whatever it is he always knows what to say and how to make me laugh about any situation. He allows me to crack and listens but then in the end I always know he is going to snap me back into place. He tells me I do more than anyone he knows. He admires how I hold our family and home life together. He marvels at how I help so many people. All the little things that I think are trivial and do not matter much to the world, to him are monumental. He believes I am the greatest woman he knows and that one really cracks me up. He always knows how to help me take that step back and realize how much I do, do. No, I don't bring in a paycheck which will be hard for me no matter what Rich or anyone else says, but I give and I must continue to learn that sometimes just giving is enough. If you know me at all money and material things are nothing to me, as long as bills can be paid I am good. As long as I have a little extra cash to help someone else I am good. I don't want to work to gain riches because riches are worthless, (unless you are married to one because my Rich is priceless, insert sappy here), but to have the self worth for me, not anyone else, is all I really want. To have the longing to be like everyone else. I know it more than likely isn't going to happen but I will never give up the hope!
Today I move forward feeling a little better after my Richtervention. He is the master and I am thankful for him and his love and understanding. I wonder how many men could handle the stresses of living with a chronically ill person. I am not just talking of the physical but the emotional aspects of it. Understand me, I am not a complainer and rarely do complain unless something is almost unbearable for me. I hide a lot from him and everyone else, but there are those times I have to let it all out. Poor Rich is the place I go. My safe haven. He is a master at handling it along with all the stresses of owning a business. It is funny because he always tells me how blessed he is but I have to remind him I am the one who is blessed, more blessed than he will ever know.
Today is a new day and I will embrace it with a new outlook all the while wondering about it all and trying to make sense of it all. I don't think that is going to happen so I am going to try to live in the moment and quit looking so far ahead. It seems when I start to look ahead and try to figure it all out is when I get myself in trouble, so here is to today and only today!!
God Bless!
Dianne
Saturday, September 15, 2012
Wednesday, September 12, 2012
Godsend
I received a call on Monday that my shoe inserts were ready to be picked up so of course as soon as I hung up the phone I was in the car. It was another rough weekend but that's okay. It wasn't all from the foot but I am still having continuous issues. I am happy the pain was kept at bay and at a level that I could handle. The worst part is that my neck has been giving me more issues than normal once again. I cannot win. I jump from one thing to another. Yesterday my gastritis, inflammation of the stomach, was acting up once also. This is very common with autoimmune suffers but it is usually just a mild twinge of pain and nothing to really write about, until the past few days. I knew it was getting worse on Monday but I figured take some Gaviscon and it will be gone, this time I was wrong. Yesterday I went into a full blown attack and it wasn't/isn't any fun at all. At this moment it is semi controled because I stopped at Walgreens and bought a bottle of Malox liquid. I ran to the car put my seatbelt on and grabbed the jug out of the bag. I looked around and thought to myself I better not chug it right here so as soon as I got on the road at a light I chugged a few gulps. I have no idea why I was concerned about doing it in the parking lot when the light was just as busy. Dizzy! But truthfully when you are experiencing jabbing pains in your stomach that won't subside you gotta do what you gotta do. Chuggalugglugg! Ahhhh, semi relief! I can live with this.
I went this morning for a massage to hopefully loosen up some of the muscles in my neck so I can get back to sleeping again. I always have issues with my neck when I lay down but when it is this bad it is a nightmare to say the least. It would figure I would have to deal with more than one thing on top of all else and all at the same time. When my neck goes out it sends everything out of balance. I have wrote many times how important sleep is when you suffer any pain or autoimmune disease. I stopped massages over a month ago because I wanted to find a new place to go and never got around to finding a place, bad move on my part and the past few weeks I have begun to pay for it.
I received a flyer from The Center For Good Health in Holland. Mind you, I usually either skim through those flyers or throw them away without a second thought. You have to understand when you are ill just reading a flyer with all the classes you can sign up for can make you feel really bad because you can't do them. You start thinking how unfair it is that you can't do that exercise class or that swimming class or whatever it is you read, I hate doing that to myself. This time was different I actually sat down and skimmed more intensely through the brochure book. I read and thought to myself, 'oh how I wish I could do that.' Then I came to a smaller ad that said medical massage and I thought to myself I should call so last week I called and talked to a very nice lady for a while. She explained about the message and I made the appointment for today. When I was driving home today after the massage I already felt looser so I am very thankful for that.
The woman who worked on me has to have been a Godsend, that is all I can say. She has lupus. She was on all kinds of medications and now takes none. She is writing a book and hopes to have it out in the next year. Can you imagine how it felt as I heard her talk? If you have been following my blog the past few weeks I have talked much about how sick I am of taking these drugs and I now I meet someone who has weaned off all her drugs, is writing a book, does massage therapy, and also teaches yoga at the center. Guess what? I signed up for Very Very Beginners Yoga. YAY for me! This is a monumental step for me and I feel God has finally led me to the right place at just the right time and to the right person. I must tell you, as she laid her hands on my neck and upper back her first words when she felt my muscles were, "OH SWEETHEART," in a very understanding but concerned voice. It wasn't the I feel sorry for you voice but the voice of someone who could feel my pain in her hands. I knew at that moment I was in the right place and this was before she even started telling me her story. Plus she had great energy so I liked that a lot!
I made another appointment for next weeks massage and I am looking forward to feeling better. I have got to try to take some control of this madness. I feel like I keep going downhill instead of up. I am hoping I will have more good days and nights after I get on some kind of a mind, body, spirit plan. I know I already do these things for the most part, but I also know I need improvement with all of them, I think we always so no matter how well we do them. So, here is taking the bull by the horns and once again trying to do more things right than wrong. It isn't that easy and takes time. We are all a work in progress. Fall down, get back up. Suffer and know you will come out of it. It is all good somehow and God sends what we need when we need it if we are only open to listening. I'm glad I listened!
God Bless!
I went this morning for a massage to hopefully loosen up some of the muscles in my neck so I can get back to sleeping again. I always have issues with my neck when I lay down but when it is this bad it is a nightmare to say the least. It would figure I would have to deal with more than one thing on top of all else and all at the same time. When my neck goes out it sends everything out of balance. I have wrote many times how important sleep is when you suffer any pain or autoimmune disease. I stopped massages over a month ago because I wanted to find a new place to go and never got around to finding a place, bad move on my part and the past few weeks I have begun to pay for it.
I received a flyer from The Center For Good Health in Holland. Mind you, I usually either skim through those flyers or throw them away without a second thought. You have to understand when you are ill just reading a flyer with all the classes you can sign up for can make you feel really bad because you can't do them. You start thinking how unfair it is that you can't do that exercise class or that swimming class or whatever it is you read, I hate doing that to myself. This time was different I actually sat down and skimmed more intensely through the brochure book. I read and thought to myself, 'oh how I wish I could do that.' Then I came to a smaller ad that said medical massage and I thought to myself I should call so last week I called and talked to a very nice lady for a while. She explained about the message and I made the appointment for today. When I was driving home today after the massage I already felt looser so I am very thankful for that.
The woman who worked on me has to have been a Godsend, that is all I can say. She has lupus. She was on all kinds of medications and now takes none. She is writing a book and hopes to have it out in the next year. Can you imagine how it felt as I heard her talk? If you have been following my blog the past few weeks I have talked much about how sick I am of taking these drugs and I now I meet someone who has weaned off all her drugs, is writing a book, does massage therapy, and also teaches yoga at the center. Guess what? I signed up for Very Very Beginners Yoga. YAY for me! This is a monumental step for me and I feel God has finally led me to the right place at just the right time and to the right person. I must tell you, as she laid her hands on my neck and upper back her first words when she felt my muscles were, "OH SWEETHEART," in a very understanding but concerned voice. It wasn't the I feel sorry for you voice but the voice of someone who could feel my pain in her hands. I knew at that moment I was in the right place and this was before she even started telling me her story. Plus she had great energy so I liked that a lot!
I made another appointment for next weeks massage and I am looking forward to feeling better. I have got to try to take some control of this madness. I feel like I keep going downhill instead of up. I am hoping I will have more good days and nights after I get on some kind of a mind, body, spirit plan. I know I already do these things for the most part, but I also know I need improvement with all of them, I think we always so no matter how well we do them. So, here is taking the bull by the horns and once again trying to do more things right than wrong. It isn't that easy and takes time. We are all a work in progress. Fall down, get back up. Suffer and know you will come out of it. It is all good somehow and God sends what we need when we need it if we are only open to listening. I'm glad I listened!
God Bless!
Monday, September 10, 2012
Beads, Beads, And More Beads
I have been thinking a lot lately or should I say more like wondering. I wonder a lot about many different things but for some reason the past weeks have laid the burden of all the drugs I am taking. Ever since I had the encounter with my new doctor who caught me off guard about getting off the Xanax. I think I have really gotten angry over the whole thing. I am cutting back and I know in the end it will all be worth it. It is like cutting down on a steroid dose it can be brutal to say the least. I talked with my Rheumatologist about cutting back on the steroids but there is no way I would be able to cut back on Xanax and the Medro. It could be a disaster so for now I work on one thing at a time. Right now I work on the Xanax breakup. I am sure this is what is affecting me so brutally right now.
It is like a nightmare you never wake up from, these drugs. I am kicking myself in the butt for ever starting them but then when I think back I felt I had no choice at the time. If didn't try something I wonder what would have happened. It is a hard burden to carry wondering if you did the right thing or not. At that time my eyes were so bad that NOT taking something wasn't even an option. Living life with my eyes closed was not living life for me at all. I mean it isn't like all the sudden I would have gotten better so now I live day to day wondering what tomorrow will bring. I usually do not do that but this week I have something on the calendar everyday and that can be extremely scary for someone with chronic illness. I try not to think to deep but at times like this past week with all the bad days I am a little weary wondering. I'm trying not to but when I had a great day yesterday I was very optimistic, until I woke up this morning. I literally did nothing today. Well, a few things, but mostly nothing. I hate it. I live in fear of all the things that can happen with this monster.
What if I never started the meds? What if I tried to go with all the natural remedies I read about? I do try the best I can to live a clean life but I am still human. It is hard to be perfect at everything when your life is so out of control and out of your hands so to speak. I mean, I watch everyone else live lives of doing while I sit on the sidelines just trying to be a little normal as I continue to lose more and more of some of the things I love. Getting out, going to church, hanging with friends at night, it is just too hard to do for me, unless I have good days. When you are in the bad you can hardly remember the good and vice versa when you are in the good days.
I sleep in late and have a very hard time getting out of bed. I get tired very easily just talking to people, I know that makes no sense, I am wore down by 7pm and need to just stop. It is impossible to explain, plus the world doesn't get it anyways, and I don't think ever will. The thoughts of kicking myself in the butt for going on drugs has been laying heavy on my heart as I wonder how many of my symptoms are really side effects of the drugs. It isn't like I can just stop all this madness cold turkey, it could be deadly if I do. No one understand this part of illness. I get lots of advice on what I should try from many people. Rich even gets it at work, "Has your wife tried this or that?" It drives me bonkers. It is a struggle and I sure do not need people butting into my treatment plan when they have no idea what is going on with me. People who have never been at one doctor appointment with us. People who have not witnessed how ill I really am. Enough said.
I cherish yesterday. It now sits in my file, my memory files, a perfect day with my family and grand babies, minus Richie and Leah sadly. I mourn for days like yesterday when I feel like I have over the past week, if yesterday is taken out of the equation. I begin to feel sorry for myself and I cannot tell you how much I hate that in a person. Although I cannot say I really feel sorry for myself, I guess what I am trying to say is that I am sorry for all I miss in life. All the missed opportunities I use to be able to participate in. I know this isn't explained well but I am sure my chronically ill friends know exactly the point I am trying to get across. I wonder if we ever truly accept this?
This weekend I did make it over to Hobby lobby. I didn't feel great Saturday, but I still made myself go. I decided I need a new hobby for the days I am just sitting feeling like crap. I bought a bunch of beads and string and decided I am going to start making necklaces and bracelets. It at least helps me to feel like I am doing something when I am weak and weary. Let me tell you, who would ever think someone with Inflammatory Arthritis could bead? Do you know how small that string and those beads are? Do you know how hard it is for someone with arthritis to hold onto anything small? It is sheer torture, believe me. BUT, I AM DOING IT! I will win! I also figure it is also good therapy for my hands so I am killing two birds with one stone. Yes, I will have necklaces and bracelets coming out of my ears but oh well. I will have something else to give away to others and leave a piece of me with them as they leave. Who wouldn't love that? There always is a brighter horizon even when you think there isn't!
I gotta go my beads are calling me. What is calling you?
God Bless!
Dianne
It is like a nightmare you never wake up from, these drugs. I am kicking myself in the butt for ever starting them but then when I think back I felt I had no choice at the time. If didn't try something I wonder what would have happened. It is a hard burden to carry wondering if you did the right thing or not. At that time my eyes were so bad that NOT taking something wasn't even an option. Living life with my eyes closed was not living life for me at all. I mean it isn't like all the sudden I would have gotten better so now I live day to day wondering what tomorrow will bring. I usually do not do that but this week I have something on the calendar everyday and that can be extremely scary for someone with chronic illness. I try not to think to deep but at times like this past week with all the bad days I am a little weary wondering. I'm trying not to but when I had a great day yesterday I was very optimistic, until I woke up this morning. I literally did nothing today. Well, a few things, but mostly nothing. I hate it. I live in fear of all the things that can happen with this monster.
What if I never started the meds? What if I tried to go with all the natural remedies I read about? I do try the best I can to live a clean life but I am still human. It is hard to be perfect at everything when your life is so out of control and out of your hands so to speak. I mean, I watch everyone else live lives of doing while I sit on the sidelines just trying to be a little normal as I continue to lose more and more of some of the things I love. Getting out, going to church, hanging with friends at night, it is just too hard to do for me, unless I have good days. When you are in the bad you can hardly remember the good and vice versa when you are in the good days.
I sleep in late and have a very hard time getting out of bed. I get tired very easily just talking to people, I know that makes no sense, I am wore down by 7pm and need to just stop. It is impossible to explain, plus the world doesn't get it anyways, and I don't think ever will. The thoughts of kicking myself in the butt for going on drugs has been laying heavy on my heart as I wonder how many of my symptoms are really side effects of the drugs. It isn't like I can just stop all this madness cold turkey, it could be deadly if I do. No one understand this part of illness. I get lots of advice on what I should try from many people. Rich even gets it at work, "Has your wife tried this or that?" It drives me bonkers. It is a struggle and I sure do not need people butting into my treatment plan when they have no idea what is going on with me. People who have never been at one doctor appointment with us. People who have not witnessed how ill I really am. Enough said.
I cherish yesterday. It now sits in my file, my memory files, a perfect day with my family and grand babies, minus Richie and Leah sadly. I mourn for days like yesterday when I feel like I have over the past week, if yesterday is taken out of the equation. I begin to feel sorry for myself and I cannot tell you how much I hate that in a person. Although I cannot say I really feel sorry for myself, I guess what I am trying to say is that I am sorry for all I miss in life. All the missed opportunities I use to be able to participate in. I know this isn't explained well but I am sure my chronically ill friends know exactly the point I am trying to get across. I wonder if we ever truly accept this?
This weekend I did make it over to Hobby lobby. I didn't feel great Saturday, but I still made myself go. I decided I need a new hobby for the days I am just sitting feeling like crap. I bought a bunch of beads and string and decided I am going to start making necklaces and bracelets. It at least helps me to feel like I am doing something when I am weak and weary. Let me tell you, who would ever think someone with Inflammatory Arthritis could bead? Do you know how small that string and those beads are? Do you know how hard it is for someone with arthritis to hold onto anything small? It is sheer torture, believe me. BUT, I AM DOING IT! I will win! I also figure it is also good therapy for my hands so I am killing two birds with one stone. Yes, I will have necklaces and bracelets coming out of my ears but oh well. I will have something else to give away to others and leave a piece of me with them as they leave. Who wouldn't love that? There always is a brighter horizon even when you think there isn't!
I gotta go my beads are calling me. What is calling you?
God Bless!
Dianne
Friday, September 7, 2012
Brain Overload
Here I go again repeating the same thing over and over like I have so many times. I think of the Three Stooges boing myself up side the head saying, you idiot. I should have known something was up yesterday with the way I felt, classic sign blurry vision and droopy eye, who come I didn't put it all together? I kept blaming it on the drugs, which it may well have been, but when I woke up at 4 am the morning with a migraine I thought to myself, AH the answer to yesterday. Seriously? I couldn't figure it out yesterday that, that is what was on the horizon? Every time I have a day like yesterday or an evening where something is off I always wake up with a migraine either in the middle of the night or early morning. This one was no different. I did the usual coffee, excedrin migraine, back to bed with a towel over my eyes and tried to go back to sleep as hard as it is. Five hours in hell.
I laid there thinking, as I usually do, because when you are in that much pain all you can do is think, sleep is impossible. You would think as hard as it knocks you down that you would sleep but it seems your brain is on overload mode. The longer I laid there the more I thought about it. I have said before my migraines put on a fascinating light show for some reason. I have taken all precautions for when one strikes. I had Rich put up a shade, a dark wooden blind, and dark maroon curtains to keep the light out of our room for the days the migraines strike. I also lay there with a dark washcloth over my eyes but as crazy as it sounds I feel like I am in a room full of spot lights pointing directly in my eyes while an ice pick chips away at my brain behind my eyes, sometimes one eye, sometimes both, fortunately this was a one eyer. Yes, that IS fortunate to me. I thought more on the light show and another way to explain it is like in the movies when you see lightning hit a transformer or an electrical wire. There are times the light show is like the transformer brighter and firing off like crazy and other times it is the slow sparks of one electric wire. It is so hard to explain, unless you are one of the less fortunate to experience them, which I hope that is not the case. The better the pain became the lights became like puffy clouds floating by so I dreamed of Rich and I laying down watching them fly by. The only place in the world I feel safe, in his arm, so I dream about being there a lot when I am not doing well. I get a peace there that I cannot find anywhere else. Whether we are making love or just laying beside one another in silence, okay that doesn't happen much with me, but you get the picture he is my safe haven.
I thought more about the brain connection to a migraine. I tried to figure out what in the world did I do differently the past few days that would provoke a migraine to hit? Did I eat something different? No. Did I do something different? No. Did I this? Did I that? My brain tries to figure it out so I can avoid whatever it may have been at all costs. I know my neck is in much pain today so I am blaming my neck. I'm still not sure that is the real reason but at least it gives me something to go on. Of course the longer I laid there and the more I thought, 5 hours worth of time is too long to think. I thought about the brain. What an amazing part of the human body. It controls everything. The control center if you will. I was thinking about the telephone operators in the days long, long ago. You know the ones, they sat at a chair plugging in the lines on the big switchboard in front of them. I thought of our brain like that. I have been busy especially last month with the wedding. The overload the day of the wedding. My brain has had so many wires being plugged into it I think it just short circuited or something. It got tired and decided to attack me to tell me to slow down for a minute and start to take better care of me. I kind of forgot that the past few months, not because I didn't want to but because I had no choice. I ate wrong, gained back a few pounds, ran high on stress, etc. It is always bound to catch up to someone but especially with a person who is always ill in one way or another.
I look back to when I was doing it all right. Eating right, slowing down and taking better care of me, realize I have to go back there. I was still having good and bad days even as I was doing it all right, it was still an up and down roller coaster ride but I felt I had a little more control over what was going on, even with the whole foot problem.
I almost feel like I am back in a horror movie running from a monster and I can't get away. Or like a haunted house where there are the people dressed up in the scary costumes grabbing at you or chasing you down a hall only I can feel that monster behind me every minute and I keep running trying to keep ahead. I know it is bound to catch up to me at some point and it has. Once again I am beat to the core. I know for this minute it is the migraine hangover. Last weekend it was the excruciating pain from my foot, next weekend, who knows, hopefully nothing. All I know is I will never stop running. Even when the monster catches me I will still fight him with everything I have. If that means I lay in bed in the dark for 5 long hours thinking of stupid things like this, trying rationalize all that is going on, then so be it. That is the way I deal with it. Plus, I figure it keeps me from going crazy when I can try to make sense out of things. For some reason I don't know if it does, but for me it works.
We move on my fellow suffers. All of us who suffer whether it is with illness, relationships, jobs, whatever it is, we all must continue to run from the monsters in our life, hoping that one day we will turn around and they will all be gone. In the meantime we dance, we love, and we support one another in love. Press on!
God Bless!
Dianne
I laid there thinking, as I usually do, because when you are in that much pain all you can do is think, sleep is impossible. You would think as hard as it knocks you down that you would sleep but it seems your brain is on overload mode. The longer I laid there the more I thought about it. I have said before my migraines put on a fascinating light show for some reason. I have taken all precautions for when one strikes. I had Rich put up a shade, a dark wooden blind, and dark maroon curtains to keep the light out of our room for the days the migraines strike. I also lay there with a dark washcloth over my eyes but as crazy as it sounds I feel like I am in a room full of spot lights pointing directly in my eyes while an ice pick chips away at my brain behind my eyes, sometimes one eye, sometimes both, fortunately this was a one eyer. Yes, that IS fortunate to me. I thought more on the light show and another way to explain it is like in the movies when you see lightning hit a transformer or an electrical wire. There are times the light show is like the transformer brighter and firing off like crazy and other times it is the slow sparks of one electric wire. It is so hard to explain, unless you are one of the less fortunate to experience them, which I hope that is not the case. The better the pain became the lights became like puffy clouds floating by so I dreamed of Rich and I laying down watching them fly by. The only place in the world I feel safe, in his arm, so I dream about being there a lot when I am not doing well. I get a peace there that I cannot find anywhere else. Whether we are making love or just laying beside one another in silence, okay that doesn't happen much with me, but you get the picture he is my safe haven.
I thought more about the brain connection to a migraine. I tried to figure out what in the world did I do differently the past few days that would provoke a migraine to hit? Did I eat something different? No. Did I do something different? No. Did I this? Did I that? My brain tries to figure it out so I can avoid whatever it may have been at all costs. I know my neck is in much pain today so I am blaming my neck. I'm still not sure that is the real reason but at least it gives me something to go on. Of course the longer I laid there and the more I thought, 5 hours worth of time is too long to think. I thought about the brain. What an amazing part of the human body. It controls everything. The control center if you will. I was thinking about the telephone operators in the days long, long ago. You know the ones, they sat at a chair plugging in the lines on the big switchboard in front of them. I thought of our brain like that. I have been busy especially last month with the wedding. The overload the day of the wedding. My brain has had so many wires being plugged into it I think it just short circuited or something. It got tired and decided to attack me to tell me to slow down for a minute and start to take better care of me. I kind of forgot that the past few months, not because I didn't want to but because I had no choice. I ate wrong, gained back a few pounds, ran high on stress, etc. It is always bound to catch up to someone but especially with a person who is always ill in one way or another.
I look back to when I was doing it all right. Eating right, slowing down and taking better care of me, realize I have to go back there. I was still having good and bad days even as I was doing it all right, it was still an up and down roller coaster ride but I felt I had a little more control over what was going on, even with the whole foot problem.
I almost feel like I am back in a horror movie running from a monster and I can't get away. Or like a haunted house where there are the people dressed up in the scary costumes grabbing at you or chasing you down a hall only I can feel that monster behind me every minute and I keep running trying to keep ahead. I know it is bound to catch up to me at some point and it has. Once again I am beat to the core. I know for this minute it is the migraine hangover. Last weekend it was the excruciating pain from my foot, next weekend, who knows, hopefully nothing. All I know is I will never stop running. Even when the monster catches me I will still fight him with everything I have. If that means I lay in bed in the dark for 5 long hours thinking of stupid things like this, trying rationalize all that is going on, then so be it. That is the way I deal with it. Plus, I figure it keeps me from going crazy when I can try to make sense out of things. For some reason I don't know if it does, but for me it works.
We move on my fellow suffers. All of us who suffer whether it is with illness, relationships, jobs, whatever it is, we all must continue to run from the monsters in our life, hoping that one day we will turn around and they will all be gone. In the meantime we dance, we love, and we support one another in love. Press on!
God Bless!
Dianne
Thursday, September 6, 2012
Crap Day
My day didn't start out well at all. I woke up at 5 am and couldn't get back to sleep so I just laid there knowing I would eventually fall back into a slumber. It did happen, at least I think it did, somewhere in between a dream or what seemed like a dream, even though I felt wide awake. I laid there and had some sort of weird sensation in my head. I would be lying if I said I never had it before. It was like my head got all fuzzy and I couldn't wake up. I tried to move and nothing happened. I laid there thinking I was having a stroke all the while trying to call Rich's name as I could hear him in the kitchen making his lunch or breakfast, one of the two. It seemed like I woke up and moved and could see the lights on in the kitchen so I thought it was just a dream try to go back to sleep and having the same thing happen once again. It is odd because I have had this before, only one time, but I remember it distinctly. I thought I was having a stroke that time too. All I could think both times was that I would to be able to hear Rich close the door for work and I am either going to lie here until he gets home or die, one of the two. If I recall I woke up and moved that time too except for the fact that I got up that time because I was so scared and didn't want to go back to sleep because of the fear of that no control feeling. I can only imagine how stroke patients feel when you hear stories of people who have strokes and they lay there unable to move but aware of all that is going on around them. Creepy!
Last night was shot night. Methotrexate. I always know the next day will not be good, it just happens. Probably from the poison running throughout my veins. The poison that in a few days helps me to at least have a pretty good weekend. Today has been different. I feel worse than normal. My eye is drooping much more than usual which is kind of scarring me because I haven't had issues with that since I have been back on the weekly shots. My head feels flighty and I am weak. I am trying to tell myself that this will all be better tomorrow and I am hoping for that too. Thankfully my foot hasn't been as bad as it was over the past weekend so I am not having to deal with that like I was. It still is not good but I can live with this. Do I want to? No, but like I always say, "It is what it is."
The strange part in all of this is that I can't get that feeling out of my head. The laying there not knowing what is going on around me. I am almost afraid to go to sleep tonight in fear that it might happen again. I haven't even told Rich yet because I know if I do he will lay awake all night checking on me and to me there is no sense to that. I hate when he has to worry about me, it is worse than the illness, for me at least. What is meant to be is meant to be. It is one of those days that it would be better if it would all just end. But then I begin to think of all the good in my life and I have to stop myself from thinking like that. It isn't easy when you are sick and it feels like it will never end. I am tired today. I am weary. I am sad. But I am not a quitter and I will fight this. I will pray to God for a good day tomorrow and if not then I will deal with whatever I am given. Easy? Hell NO! Worth the fight? Hell YES! So into the night I go not knowing what will happen but knowing all the while no matter what happens I am in a good place.
God Bless!
Dianne
Last night was shot night. Methotrexate. I always know the next day will not be good, it just happens. Probably from the poison running throughout my veins. The poison that in a few days helps me to at least have a pretty good weekend. Today has been different. I feel worse than normal. My eye is drooping much more than usual which is kind of scarring me because I haven't had issues with that since I have been back on the weekly shots. My head feels flighty and I am weak. I am trying to tell myself that this will all be better tomorrow and I am hoping for that too. Thankfully my foot hasn't been as bad as it was over the past weekend so I am not having to deal with that like I was. It still is not good but I can live with this. Do I want to? No, but like I always say, "It is what it is."
The strange part in all of this is that I can't get that feeling out of my head. The laying there not knowing what is going on around me. I am almost afraid to go to sleep tonight in fear that it might happen again. I haven't even told Rich yet because I know if I do he will lay awake all night checking on me and to me there is no sense to that. I hate when he has to worry about me, it is worse than the illness, for me at least. What is meant to be is meant to be. It is one of those days that it would be better if it would all just end. But then I begin to think of all the good in my life and I have to stop myself from thinking like that. It isn't easy when you are sick and it feels like it will never end. I am tired today. I am weary. I am sad. But I am not a quitter and I will fight this. I will pray to God for a good day tomorrow and if not then I will deal with whatever I am given. Easy? Hell NO! Worth the fight? Hell YES! So into the night I go not knowing what will happen but knowing all the while no matter what happens I am in a good place.
God Bless!
Dianne
Tuesday, September 4, 2012
A Rude Awakening
This is it. This is the entry that rips my heart out as I write it. It is from my heart and it is raw. It has nothing to do with being ill, for the most part, although for me it has everything to do with being ill. It saddens my heart out when I think of it and brings tears to my eyes so fast that I cannot think about it too hard or too long. I am hoping if I write it down I can forget it and move on. It is the time all mothers must, number one, face, and number two, accept, at one time in their life. It is heartbreaking and heartwarming both at the same time. It is a rebirth so to speak. A rebirth for yourself as well as your children. A new life for all who are involved and what we all strive for as our children grow and leave home. It is the moment you realize you are not needed as much as you would like. Its that moment it all hits you like a jackhammer on hard concrete, you know when you hear that it makes you cringe because it is so loud it almost hurts your ears? kind of like that. What a fitting blog entry on the first day of school as I see many posts on facebook of mothers who are either happy or struggling, it is a mix of both today.
This entry begins at Steph's wedding reception last weekend. It was after all the whirlwind of the day ended. The wedding was over, the dinner was over, the cake, dances, and other festivities were done, I was exhausted to the core and nothing made sense anymore. Thinking even hurt my brain but as I sat in the chair alone I thought about a lot, mostly about being lone. To be honest I never felt more alone in my entire life as I did in that moment of time sitting at the table. I looked around and saw people I knew but didn't really feel connected to any of them at all. I watched Katie and Dave together laughing and enjoying one another in their love. I saw Vinnie with his bride, Steph, and saw a very happy couple who obviously belonged together. I don't think Vinnie wiped that huge smile off his face the whole day, they were truly meant to be together. I saw Richie and Leah and thought to myself, next year this will be them. They are so perfect for one another and their happiness together eludes love. I looked around and saw Rich doing his usual, entertaining of the crowds. For some reason he has always been the one to make sure everyone has a good time whether it is our weddings or another gatherings, he is always worried about everyone having fun. You must understand when it comes to this I do not, and never have, felt it was my obligation to make people have fun. I believe that is up to each and everyone of us to do this on our own, this is where Rich and I differ in so many ways. I do not understand his need to entertain the crowds and while I am always on the sidelines, watching, alone. If it is ever up to me I would pick staying home laying in bed together where he would pick being with people. If it wasn't for him I would probably lock myself away and never see anyone. I believe I would be happy doing so it is just who I am. Wired different then most people.
When I was looking around the room at that moment to a room full of people, as I wrote, I never felt more alone in my whole entire life. I was totally lost. I thought to myself, 'This is it?' My whole life has been about my children and now I am left with nothing? I was lost. I devoted my whole life to Rich and my children and now I felt I had nothing at all. The realization that they really don't need me anymore hit me hard as they progressed with the night and I sat there alone to tired to even want to talk to anyone. It was a hard pill to swallow at that moment.I just wanted to run and never come back. If I have to be honest that was not a very good night for me emotionally what so ever. I never led on to anyone so here it is for the whole world to read. Truthfully, in that night, I just wanted to run away and never come back. I can imagine most people reading this who know me are thinking why would she want to run away when she have it all. I do, but I am talking about me. The inner being of myself that no one really knows. The heart and soul that holds in so much because people do not need to know what I am really thinking, especially as I was surrounded by people who really do not care about me or my family and show up to things out of obligation. This wedding has made me realize even more than I already do that you only have those who are your flesh and blood to be there for you when you really need them. Illness and caused me to have a raw understanding of life and people. Good and bad, it is what it is, for me at least.
Positive. You know my blog always has a positive side at least I try to make it that way this entry it no different. I have thought about the wedding a lot over the past week. I have thought about some of the things that happened over the past ten months of planning the wedding, the stress, the heartless actions of people, the preparations, the sitting there all alone at the reception with all the "stuff" running through my head. I wish I wasn't the type of person who has to think so much on everything. I wish I didn't have such a big heart. I wish things didn't bother me so much, but that is my make up, it isn't going to change. I came to the conclusion that being alone isn't all that bad. I realized over my week of deep thinking that I really am not alone. I have raised three very responsible adults. All three of them adding goodness to society, all the while taking care of themselves, and making their own lives without me there every minute to help them out. It actually is a very good place to be as a mother. Yes, they still call me, and we are still very close, but something has changed. They have grown up on me while I never took a minute to realize they were doing so and in the meantime I lost myself somewhere. This week I start with a better outlook. I talked with Rich this weekend and spend some much need alone time, doing what I love doing, laying in bed. Talking, being close, and trying to figure out what the next chapter brings. I am not sure what it is but I know I need to find something. It will come to me one of these days.
I continue being a mother. I will be here when my any of them need me and even when they don't. Waiting for the text or the phone to ring and hearing the words, Mom, or Dianne, what do you think about this, or what do you think I should do about that? The only difference now is my answers to the questions. When they ask "What do you think you should do?" I have to take a step back. I have to allow them to decide the big decisions and guide them along as they choose which path to go down. When they make a mistake I have to stand back and watch them hurt or suffer. It isn't easy, but it is the way life works. So even as I feel more alone than I have ever felt in my life I am rich, much richer than I have ever been. Rich in love. Love I have for my family and the love I feel from them. Whether other people care, or don't, I have them and when I think about it I wonder what more do I really need?
God Bless!
Dianne
This entry begins at Steph's wedding reception last weekend. It was after all the whirlwind of the day ended. The wedding was over, the dinner was over, the cake, dances, and other festivities were done, I was exhausted to the core and nothing made sense anymore. Thinking even hurt my brain but as I sat in the chair alone I thought about a lot, mostly about being lone. To be honest I never felt more alone in my entire life as I did in that moment of time sitting at the table. I looked around and saw people I knew but didn't really feel connected to any of them at all. I watched Katie and Dave together laughing and enjoying one another in their love. I saw Vinnie with his bride, Steph, and saw a very happy couple who obviously belonged together. I don't think Vinnie wiped that huge smile off his face the whole day, they were truly meant to be together. I saw Richie and Leah and thought to myself, next year this will be them. They are so perfect for one another and their happiness together eludes love. I looked around and saw Rich doing his usual, entertaining of the crowds. For some reason he has always been the one to make sure everyone has a good time whether it is our weddings or another gatherings, he is always worried about everyone having fun. You must understand when it comes to this I do not, and never have, felt it was my obligation to make people have fun. I believe that is up to each and everyone of us to do this on our own, this is where Rich and I differ in so many ways. I do not understand his need to entertain the crowds and while I am always on the sidelines, watching, alone. If it is ever up to me I would pick staying home laying in bed together where he would pick being with people. If it wasn't for him I would probably lock myself away and never see anyone. I believe I would be happy doing so it is just who I am. Wired different then most people.
When I was looking around the room at that moment to a room full of people, as I wrote, I never felt more alone in my whole entire life. I was totally lost. I thought to myself, 'This is it?' My whole life has been about my children and now I am left with nothing? I was lost. I devoted my whole life to Rich and my children and now I felt I had nothing at all. The realization that they really don't need me anymore hit me hard as they progressed with the night and I sat there alone to tired to even want to talk to anyone. It was a hard pill to swallow at that moment.I just wanted to run and never come back. If I have to be honest that was not a very good night for me emotionally what so ever. I never led on to anyone so here it is for the whole world to read. Truthfully, in that night, I just wanted to run away and never come back. I can imagine most people reading this who know me are thinking why would she want to run away when she have it all. I do, but I am talking about me. The inner being of myself that no one really knows. The heart and soul that holds in so much because people do not need to know what I am really thinking, especially as I was surrounded by people who really do not care about me or my family and show up to things out of obligation. This wedding has made me realize even more than I already do that you only have those who are your flesh and blood to be there for you when you really need them. Illness and caused me to have a raw understanding of life and people. Good and bad, it is what it is, for me at least.
Positive. You know my blog always has a positive side at least I try to make it that way this entry it no different. I have thought about the wedding a lot over the past week. I have thought about some of the things that happened over the past ten months of planning the wedding, the stress, the heartless actions of people, the preparations, the sitting there all alone at the reception with all the "stuff" running through my head. I wish I wasn't the type of person who has to think so much on everything. I wish I didn't have such a big heart. I wish things didn't bother me so much, but that is my make up, it isn't going to change. I came to the conclusion that being alone isn't all that bad. I realized over my week of deep thinking that I really am not alone. I have raised three very responsible adults. All three of them adding goodness to society, all the while taking care of themselves, and making their own lives without me there every minute to help them out. It actually is a very good place to be as a mother. Yes, they still call me, and we are still very close, but something has changed. They have grown up on me while I never took a minute to realize they were doing so and in the meantime I lost myself somewhere. This week I start with a better outlook. I talked with Rich this weekend and spend some much need alone time, doing what I love doing, laying in bed. Talking, being close, and trying to figure out what the next chapter brings. I am not sure what it is but I know I need to find something. It will come to me one of these days.
I continue being a mother. I will be here when my any of them need me and even when they don't. Waiting for the text or the phone to ring and hearing the words, Mom, or Dianne, what do you think about this, or what do you think I should do about that? The only difference now is my answers to the questions. When they ask "What do you think you should do?" I have to take a step back. I have to allow them to decide the big decisions and guide them along as they choose which path to go down. When they make a mistake I have to stand back and watch them hurt or suffer. It isn't easy, but it is the way life works. So even as I feel more alone than I have ever felt in my life I am rich, much richer than I have ever been. Rich in love. Love I have for my family and the love I feel from them. Whether other people care, or don't, I have them and when I think about it I wonder what more do I really need?
God Bless!
Dianne
Saturday, September 1, 2012
One More Day Ends
Back again? This might be the question you are asking yourself as you read this. I have been on here a lot this past week or two trying to make sense out of so many things. up until now the sense I am trying to figure out is my foot. I am in sheer agony. Every step is like a knife digging into my foot shooting into my ankle. It is almost bad enough to bring me to tears but damn it I will not allow a foot make me cry. I think if I did cry it would not only be from the pain but the exhaustion that set in yesterday. Weak, tired, wore down to the core of my physical being. I am thankful I have a good spirit and soul because if I didn't these past few days could have sent me into looney ville.
I had a lot of time to think today, which may or may not be a good thing for me. Rich is helping a friend with his yard so I have been alone for most of the day. Well, except for the pets. I think they are ready to leave to after listening to me mumble, scream, and complain all day. I have stayed off my foot, sat with the remote, my ipod, and did a few crafts, but for some reason those things don't help when you are feeling this ill.
I read something about sleep a few weeks ago and after reading it I had more to dissect. It said that you can sleep longer to catch up on sleep deprivation. If you have ever read anything about sleep that totally cancels out all that has ever been written on sleep. I have always read that if you are not sleeping enough you cannot catch up. Or if you sleep more it gives you extra time to not sleep, kind of like a saving account. I don't think that is what has ever been written either. I hate how all these studies change every month. One time you read this and another time you read that. It is enough to make a person stop reading.
I thought about this concept a lot today. I applied it to my exhaustion. I have been so busy the past few weeks with the wedding it is like it all came to an end yesterday. I woke up weak, the muscle weakness that is unexplainable. You are just limp and don't have the muscle power to do anything. It is a weakness that makes you weaker as you try to figure it all out. Odd as that sounds even as I write it my savings account ran dry. Like I have said many times before chronic illness is hard to write about. It never makes sense even to me at times as I am the one writing all these crazy jumbled words. I wish the savings account thing worked for weakness. It doesn't. You just never know when it is going to creep up on you, but when it does you remember it like it was yesterday.
I wrote earlier that Rich was helping a friend today. The plan was that the friend's wife and I were going to go with the guys and have a nice relaxing day by the lake. Well, guess what? You guessed it, chronic illness won again. I had to cancel. There is no way I would have ever been able to go and visit with them for a whole day. I am pretty sure that makes no sense to you as you read this, but for me and others with chronic illness it is a sad reality. We are fortunate to have good friends who understand and never take it personal when I can't do things. I am thankful for them as I have lost other friends from these monsters I drag around with me on a daily basis.
I am glad my foot is feeling better, if I stay off it, but I am also freaking out with the idea that as soon as I resume my normal activity all the really severe pain will come back. I have iced, put pads on the bottom of my feet, taken meds, bought special socks, wrapped it with an ace bandage, kept it up all day, and now I am scared to death to move. I know that makes no sense either. I know as soon as I get up the knife will jab me. Oh well, it could be a lot worse. I must say for some really odd reason when I come to my blog and blab I always feel better after I do, especially on the days that no one is here to listen to me blab and on the days I am struggling.
I guess that is it for today. I'm not sure if I accomplished anything with this blog but I feel better, I think.
God Bless!
Dianne
I had a lot of time to think today, which may or may not be a good thing for me. Rich is helping a friend with his yard so I have been alone for most of the day. Well, except for the pets. I think they are ready to leave to after listening to me mumble, scream, and complain all day. I have stayed off my foot, sat with the remote, my ipod, and did a few crafts, but for some reason those things don't help when you are feeling this ill.
I read something about sleep a few weeks ago and after reading it I had more to dissect. It said that you can sleep longer to catch up on sleep deprivation. If you have ever read anything about sleep that totally cancels out all that has ever been written on sleep. I have always read that if you are not sleeping enough you cannot catch up. Or if you sleep more it gives you extra time to not sleep, kind of like a saving account. I don't think that is what has ever been written either. I hate how all these studies change every month. One time you read this and another time you read that. It is enough to make a person stop reading.
I thought about this concept a lot today. I applied it to my exhaustion. I have been so busy the past few weeks with the wedding it is like it all came to an end yesterday. I woke up weak, the muscle weakness that is unexplainable. You are just limp and don't have the muscle power to do anything. It is a weakness that makes you weaker as you try to figure it all out. Odd as that sounds even as I write it my savings account ran dry. Like I have said many times before chronic illness is hard to write about. It never makes sense even to me at times as I am the one writing all these crazy jumbled words. I wish the savings account thing worked for weakness. It doesn't. You just never know when it is going to creep up on you, but when it does you remember it like it was yesterday.
I wrote earlier that Rich was helping a friend today. The plan was that the friend's wife and I were going to go with the guys and have a nice relaxing day by the lake. Well, guess what? You guessed it, chronic illness won again. I had to cancel. There is no way I would have ever been able to go and visit with them for a whole day. I am pretty sure that makes no sense to you as you read this, but for me and others with chronic illness it is a sad reality. We are fortunate to have good friends who understand and never take it personal when I can't do things. I am thankful for them as I have lost other friends from these monsters I drag around with me on a daily basis.
I am glad my foot is feeling better, if I stay off it, but I am also freaking out with the idea that as soon as I resume my normal activity all the really severe pain will come back. I have iced, put pads on the bottom of my feet, taken meds, bought special socks, wrapped it with an ace bandage, kept it up all day, and now I am scared to death to move. I know that makes no sense either. I know as soon as I get up the knife will jab me. Oh well, it could be a lot worse. I must say for some really odd reason when I come to my blog and blab I always feel better after I do, especially on the days that no one is here to listen to me blab and on the days I am struggling.
I guess that is it for today. I'm not sure if I accomplished anything with this blog but I feel better, I think.
God Bless!
Dianne
Subscribe to:
Posts (Atom)