Sunday, September 30, 2012

Illness Doesn't Care

This past week I started to feel better, whatever better is. I was trying to lay as low as possible because I knew the kids, minus Richie and Leah, were all coming over on Saturday to help Rich do some work in the woods to get ready for deer hunting. There were trees that needed to be cut down and all the little things at go along with hunting. I absolutely love being in the woods  but I love it even more when the kids and Hunter and Addi come over to go out there with us. It is such a joy for me to watch them enjoy nature and to be able to teach them things about nature. One problem, illness doesn't care.

Like I stated above I spent the week still laying low after recovering from the prior few weeks of not doing so well, that is until it came to Friday. If the kids come here I always try to make some of the foods they like and this time was no different. Rich has a great idea and suggested BBQ so it could be in the crock pot and they could eat whenever they wanted and we wouldn't have to cook while they were here. I also made pasta salad and had chips and brownies. You would think that is a pretty simple menu for a lazy day and it is for most people. Friday I went to the store and bought all the stuff and made it all Friday afternoon. Big deal right? Yes, for most people no big deal for me like climbing Mount Everest. Illness doesn't care.

I went to bed Friday night excited and couldn't wait for the next day to arrive, something I don't usually do, think to far ahead. You can imagine my frustration when I woke up with a slight migraine at four am. I figured if I took the tylenol it would be better by morning, especially since my neck was causing me so much pain. Stupid choice of drugs at that moment. I laid back down and kind of fell back to sleep and woke fully at six am with a full blown migraine. I took some excedrin migraine because I hate to take the prescription meds I have because they cause me to be ill for a few days after so for the past six months or so I have been riding out the pain. Let me tell you yesterday I should have taken the script. I had the worst migraine ever. I was so frustrated about the day being ruined but more upset and worried about getting rid of the pain. I tried everything I could think of but still ended up in bed until one pm. By the time I got out of bed I took even more excedrin migraine. It helped enough to take away the pain and I was able to go outside for a little bit. The day ended better than it began. Illness doesn't care.

This coming week Rich and I are on vacation or should I say Rich is on vacation. We don't have much planned because as you can tell from above illness doesn't care. Illness doesn't care if my family is coming over so why would it care if Rich and I are going to try to get away together? We talk about taking trips like to Vegas or to an all inclusive but the fear that illness doesn't care kind of prevents us from doing it. I have no idea what will happen. I don't know if my body will react to flying in some odd way. I don't know if sleeping on a different bed or having a different pillow will send me into hell. It is funny because it can be just a little change that can send me into some sort of flare. I now figured out why I had the neck and migraine issue yesterday. I use a water pillow and it seemed like it was getting to flat so I added a very little amount of water to it. What a mistake that was. I figured it out this time what it was that gave me the headache, but only after laying in bed yesterday morning going over it in my head. Over it and over it and over it, trying to figure it out. I also know doing the shopping and the little bit of cooking added to the mix. It is insane how the little things people do everyday and take for granted are the same things that send me into hell. Illness doesn't care.

In ending this post I know that when Rich and I decide our destinations this week there will be one thing that is a definite for sure. We will be taking something along that we don't want to take along. The illness. It isn't like a regular vacation where you can leave everything behind and just get a way. I can't take the illness off like a coat and throw it in the corner until we get back. Our whole week will have its own captain of the ship. Our captain will dictate what we can and can't do. It will decide for us whether we can go here or go there. It may allow us one day of fun and who knows what it will allow the next day as it may zap me to the ground if I do to much. Illness doesn't care.

One thing is for sure. The illness may be there and may control some parts of our vacation but we will still be together. If that means one day or two we have to rest and lay in bed we will and believe me we will enjoy every second of it. Whether it is sight seeing or laying in each others arms the illness will be there but our hearts and souls will be connected. Take that illness because we don't care. We don't care if you tag along and we don't care what you do to us. We will fight you and we will still enjoy everyday no matter what, but I am almost sure illness doesn't care.

God Bless!


Thursday, September 27, 2012

The Voice

I can still hear it, that faint voice or maybe more of a loud roar that never stops. I hear it loud and clear when I am going through a rough patch. I hear a loud laugh or maybe a roar like someone yelling out Mahahahahaha and kind of having that evil laugh all rolled into one. When I am down and not doing well it can be so loud that at times I have to tell it to shut up or maybe even tell it that it wins. I give up you are the million dollar winner. I can't do this anymore. win...maybe.

The past three weeks have been brutal once again, brutal to say the least. Just getting out of bed has been a job. I would wake up and just lay there with my eyes open. My body and muscles so weak it was hard to even roll over and when I did roll over I felt like I ran a mile. I am sure that makes no sense to the real world but I can also imagine to others it makes perfect sense. I tell you, the days like those are enough to knock you down far enough to never want to get up. The days you want it to all end. The days that voice is so loud it tries to cloud out any good thoughts a person has. It pierces your soul in some sort of odd way. I know it is just my mind, tired and wore to the core. I tell myself not to listen to that voice of despair but it isn't always that easy when you are dealing with so many issues all at one time. Kind of like when a healthy person has a cold and they think they are dying, except the ten day cure never comes for me. The voice is always there ready to make you cave and ready to make you really give up.

If you know me at all there is one thing I am, a fighter. I am a strong headed know it all, anyone who has been with me for five minutes can tell you that. I like to argue for some reason. Not in a bad way but I am a questioner. I need details. If you are telling me a story about your life you are sure to get some specific questions because I want to hear it all. I have come to realize this has either come from my Hospice training or from childhood. I know I had it before Hospice but I think the training helped me to reinforce this quality or character or whatever it is called. I grew up with two brothers so I learned how to be head strong. They picked on me a lot but what they don't know is they taught me a lot along the way. I learned to be strong willed and I learned how to stand up for myself and be outspoken, many times to a point of getting the strange looks, and the, "I can't believe you just said that" looks. Hahaha you know the ones. Every time I get that look from someone I chuckle inside while almost feeling bad at the same time. Then I tell Rich I said this or I said that and he is like, "You did?" haha more chuckles. There is the word of warning: Never ask me what I think of something unless you really want to know because it may not be what you want to hear.

Back to the voice. I do believe my strong will is the reason I can't give into the voice when I am very ill. I might get close to the edge but never over the edge! Many people with chronic illness suffer from depression, which is understandable, I am fortunate to not have to add that to my list of aliments. I hear that voice that encourages me to give up but for me it is different. I can't give up. It makes me want to fight all the harder. I will crawl into the laundry room if need be to do a load of wash when that voice is screaming at me to give in and give up. I will sit and do something for someone else when that voice is hollering your are done, washed up. I will make dinner for Rich or come here and write a blog. I will do whatever it takes to be the winner of the voice game. It will never win. My body will have to totally give out for the voice to win, and that is not going to happen if I have anything to say about it. I will fight this with everything I have, not because I have to, but because I can. If I give into the voice there is no reason as to why this is happening. I have to continue to believe this is all happening for a reason even though I do not have the answer. I push on.

The voice has become a distant voice the past few days. Oh I still hear it, believe me it is always there, just a little bit quieter. It becomes that whisper in the background waiting to rear its ugly head while I wake up each day wondering if this is when the loud thunderous sound magnifies. To be totally honest with you I hate the fact that God put the wrong soul in the wrong body. I don't understand why he would do that. The very few people I have conversed with about this have no answer either. I told my Rheumatologist that one time and she said she agreed. I have all this goodness I wish I could spread out to the world but I can't. I do the best I can wondering why I cannot give more physically to the world. I have to stop myself from thinking to deeply because it causes me so much pain in my heart when I do. Just writing it brings tears to my eyes.

Today, the voice is faint. It feels good to not have it so loud. If it is only for today then so be it, I will take it and enjoy it the best I can. Take that Mr or Mrs Voice, whichever one you are. You will never win as long as I am the captain of this ship. I must continue the good thoughts and cloud out the bad. Positive wins every time. Negative is the easy way out form where I sit and from what I experience. The more negative I get the worse I feel so I try, as hard as it is on some days, to stay as positive as possible. It is hard, hard as hell, but it is possible. It also helps to have a meltdown every once in a while. It is weird because when I am really sick my tears are for the pain, weakness, and all the symptoms, but when I feel better like yesterday the tears change. It is like they change into more tears of fear. I was talking to Rich last night and the tears came, not because I felt sick but because I felt better. It is scary every time I start to feel better. I don't know why. I think it has to be the fear that I was so bad and now better so I have a fear of when it will all crash down again. It is hard to explain but Rich always knows what to say. He was rolling his hand up and down saying you were in your few week down, down went his hand, and now you will be in your few week up, putting his hand up like a roller coaster. It is so sweet to me how he knows it and he gets it. He lives it right along with me and his love, compassion, and encouragement get me through the down times. It also makes me very sad that he has to live this just as much as I do. I know it kills him to see me when I am sick but like he always says that is why God put us together because he knew I would understand. So, when I hear the voice, many times I replace it with Rich's. His voice is so much easier to listen to then the evil Mahahahaha.

God Bless!


Monday, September 24, 2012

What Do You Do?

 What do you do? I cannot tell you how much those four words can send me into a bitter angry place. I don't understand why society bases a persons success or life on those four words. Seriously? I go to a doc appointment and am asked what do you do? Or I need to go for my regular blood checks and when I sign in I am asked, "Do you work?" Ummmm no I don't. Then the look of you don't? I hate that look. It feels like the look of either pity or what do you mean you don't work? Or it could be the look of wow you are lucky, no job, no kids at home, etc. Every time I am asked, "What do you do I want to yell at the person asking, "What are you referring to when you ask what do I do?" I really just want to let it rip or rip them a new one. This past week when I went for blood work and the girl asked me the dreaded question do you work, I said no, and she said so you are a homemaker? Seriously once again? I just said yes a homemaker. "Okay here is your paper work you can go to the right and have a  seat and someone will call you," she said quite nonchalant. Are you kidding me I think to myself. I wonder if it bothers me more than it bothers them?

I haven't really thought about the, "What do you do?" question much because truthfully right now it is taking all my energy to just exist. What do I do? If you really want me to answer that we might need to go grab a cup of coffee or dinner. At first when I am asked what do I do I usually go into a guilt mode. I don't work. I don't earn an income but I sure can spend my husbands income, and no not on the things most of the world does. What do I do, hummmmm let me think here. Most of all I force myself to stay sane. When you live chronically ill your mind can play a lot of dirty tricks on you, like when someone asks you what you do and you feel like a worthless piece of crap just taking up space. But the more I thought about the question this morning the more good I began to came up with than bad.
I don't have a "real" job, no I don't, but I have so much more. I don't earn money but to me money is worthless. I don't understand the wants of the world when all mine wants are needs to keep myself at a halfway healthy point or just get better so I can be like everyone else.

This morning I woke up after a brutal week or so. I am so exhausted I can hardly move. This is no fun but being the mind over matter person that I am I went outside to cut some flowers. One of my favorite things to do it cut flowers and dry them. For some reason seeing the dried flowers and adding them to my collection brings a smile to my face and to my soul. Then, I use them to make cards. After I walked in the woods for a bit and enjoyed the beauty for a few minutes my body said far enough don't forget you still have to get back, so I headed back with my fall collection of flowers to dry. Saturday I sat down with some clay and made some beads, after I baked them I made a homemade bead necklace. This only adds to my new hobby of making beaded necklaces. I love to paint. I haven't done it recently but I still love it. I love to draw, not good at that but it is still fun to do. I love that the picture I made of a bunny turned out so well. I asked Hunter what it was and he said, "Thumper," it was! I love to bake. I am not much into cooking anymore because the gastritis in my gut makes me want to throw up for the past year when I look at food so poor Rich has survived on simple meals, never complaining once, but always worrying about how I am doing. I love to spend time just watching my grand babies play. Addi the other day when she was over taking all the tootsie rolls and saying, "this one is for mama okay?," and "this one is for dada okay?" and so on. It was precious. I get a ton of texts, some days more than others, asking me, "Mom how do I do this or Mom how do I do that?" It makes me realize that my children do value my opinion and really do think I can do anything. Little do they know sometimes I just fake that I know so much. Every call, e-mail, or text means the world to me. I keep my house clean and believe me this isn't easy when you have a hard enough time finding the energy to get dressed on most days. Today I stripped the bed to wash the sheets, something I should do more often, but oh well. All I do never ends. No I don't work but in a sense I do because for me everything is work even the things the real world takes for granted.

The more I thought about the stupid question, "What do you do?" The more I thought to myself I do a lot, I just don't have a pay check to show for it. But I do have some beautiful art. Beautiful necklaces but most of all I have love. I have it all. I just need to remember it. I have to learn the next time someone asks me that stupid question to stand tall and stand proud because I probably do more than most people do. I have time. Time to reflect. Time to be there anytime day or night for others. Time to encourage someone. Time to do the things that I love to do. Time to love. It makes me realize we all must be happy with our "What do you do," no matter what it is because we all do matter and we all do have a special place here whether someone else thinks so or not.

God Bless!


Wednesday, September 19, 2012

What Keeps Us From Going Crazy

I am sitting here thinking. You might want to stop reading this now if you are one of the few who truly know me when I start to think. I have a tendency to get very deep, so deep that I can shut a room up in a matter of seconds with just one thought or question. Ha, it cracks me up when I think about it, but it is fun in an odd sort of way too.

I sat here at the computer checking facebook as I do every morning. My thoughts turned to the fact of how a chronically ill person keeps oneself from going crazy. I mean really falling off the edge and having to call the patty wagon to take us away and lock us in a padded room so we can bounce off the walls. I have not been well for the past few weeks and then BOOM I wake up today with much less neck pain and I feel a little stronger than I have felt. I even started to think of the things I could do around the house so that is a good sign. When you are ill you do not care about doing anything except surviving. I have been trying to get rid of all the stuff that laying around that we never use and donating it to Good Will in the hopes that someone else may need it and use it. The past week of having to sit on the couch and do nothing has been hard but today is my new day. The day I have waited for. It is here! I knew it would come and I will enjoy it and be thankful in it. I think it is about my 1,000th new day by now but I will take them as they come and enjoy them as much as possible before the next storm hits.

I have to believe that chronically ill people or people struggling with any type of illness or treatments are some of the bravest people in the world. The things we must face on a daily basis even when we are feeling well can become extremely overwhelming. Being one of these people it makes me wonder how we keep from going crazy. I think, for me at least, it is the ability to keep a hopeful outlook to the future, always telling myself that tomorrow will be a better day and doing what I have to do to get through the bad days. It isn't easy at all when you are in the middle of it but somehow you are given enough strength to do it. It comes from that inner hope and peace in my heart. I know God is watching out for me. I have the faith that all this is for a reason and I truly believe when I do die God will be there and he will wrap his arms around me and tell me it is all okay now and that I can let go. I think that is going to be the best moment in all of this pain and suffering I have to endure here on earth. I do look forward to that, but I also am still here, living, and making the best out of what I have been given. I think that is what keeps me from going crazy and I am sure that is what keeps many of you pushing on too.

Hanging on the hope. Doing the things you love. Being with the people you love and the ones who truly love you is really what this life is all about. Helping others every chance you may get even if it is just a smile or helping someone load their groceries in their cart at the check out. You think all those little things in life don't matter but they really do. In the end they are the reason we continue on. A stranger helping a stranger. A loved one dropping by or sending a note of love and taking the time to care. A husband who would do anything to make you feel better. A child who calls or sends a text to check in on how you are. All little things but  all these little things add up, they keep us sane and make us want to look forward to a new day even when we are in the bad days. My hope for you is that you can do the same and look to brighter days if you are in the struggle. Look around you and care it may just be what someone needs to keep them from falling over the edge.

God Bless!


Tuesday, September 18, 2012

The Strong Persons Fight

I feel like I am almost at the breaking point. I wonder how much more of this I can take. I know I can because I have to but I really do not want to. I have had a very rough few days. Migraines and acid reflex that is about killing me. I am happy I woke up with relief from the acid washing up into my chest and causing me to feel like I have been having a heart attack but still woke up with another migraine, the third day in a row. It gets old in a hurry as I wake up laying in bed wondering why. The why me? The why can't this all stop? Then, the why is this happening questions. I lay there with the questions going around and around and around in my head as to what has made me get so bad. I cannot figure it out. I have some clues that come to mind as far as I know when I lay on my left side I get an instant migraine but I can't understand how I was able to sleep on my left side all night with no migraine only to turn over and have the instant brain stabbing pain rear its ugly head. It makes no sense. When this happens all I want to do is lay down and sleep in the dark but when I know the pain is coming from my neck I am forced to get upright because for some reason I do better when I am upright. The past few days of being sick and weak from my acid issues I have been sitting. I think my spine gets to much pressure on it when I am down that it causes my muscles to tighten up and causes these headaches. I got out of bed and did something I never do during the day. I took a muscle relaxer, something I only do at bedtime. I hate to take that crap during the day. I feel like if I take it at night it is all okay because I am sleeping but when I take them during the day it feels like I lose and the disease wins. I know that makes no sense but for me it make perfect sense. Stupid drugs that I need to survive.

These are the times that the illness wins and it is brutal on the psyche. Usually I am a very easy going person and I still am when I don't feel well except when it comes to drugs and treatments. It makes me so angry and mad at myself that I am having to depend on a drug to just help me function. Right now I can hardly see what I am writing, it is all a big blur, which is much worst than on my normal days. It gets so old and annoying. I could scream and cry all day if I let myself but I am not going to. I am going to take a hot soak in the bath with my yummy smelling stuff. Then I am going to do my hair and put some makeup on. After that I am going to get my stretchy pants on because for some reason they always help me feel warm and comfy. I might even venture outside for a bit to enjoy some nature. I would really love to walk out in the woods but I am not sure I am strong enough to do that and this stabbing pain in my head may not even allow me to go out in the bright sunlight. I will see what happens. My point is that no matter how down this disease process knocks me I cannot and will not let it win. Yes, there are the days, like today, that I want to give up and just be done but that isn't an option.These are the days I have to accept the reality of having to take the drugs and just be okay with it. The days I tell myself tomorrow will be better and if not then the next day will be and so on.

This was on a fabebook page today and it was so appropriate for me and maybe for you too? We must never ever stop fighting because if we were not meant to be here we wouldn't be. God has us here for a reason even when it is hard to understand why on some days!

God Bless!


Saturday, September 15, 2012


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!


Wednesday, September 12, 2012


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!

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!


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!


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!


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!


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!