Thursday, November 29, 2012

It's All A Process

I have been having a terrible time with sleep since stopping the Xanax. I cannot fall asleep. I try. I try to talk to myself and prepare myself with the self talk in hopes of falling asleep when I hit the pillow. It seems to be getting worse as the nights go on. Last night I laid there until two am and decided it was time to get up so I went downstairs and watched a little television. Oh ya, that will help anyone relax, over 200 hundred channels of crap to get your juices flowing even more. I can go to bed and feel tired but as soon as I lay down my brain likes to jab me and start messing with me. It likes to go over all the crap that it should have put to rest from going over it and over it all day long. If that makes any sense as I am person who has to make sense of everything. Truthfully, I miss the Xanax so much. I almost caved last night and took some but I self talked myself into not going down that road again. I went to the doctor the other day and now I am going to try Ambien for sleep. I am not sure I am happy about this treatment either as this can also be habit forming and you are not suppose to take it for more than five weeks at a time. So after five weeks I stop and I am worse because I now have become somewhat addicted to Ambien? It is a no win situation, at least for me. My doctor also told me there are now insomnia clinics. You dedicate so much time to taking the classes and it involves a lot of homework on training your brain to sleep. I can hardly even think of adding more to my plate as I am going to start PT for my cervical spine and my foot. One step at a time is all I can handle. It is all so very exhausting to say the least, which you think would help me sleep. Hummmm, no such luck. I am anxious about starting therapy. Using the energy it will take to do therapy will completely wear me down which I am sure makes no sense to most of the world but if you are chronically ill you understand.

I laid there with all of the above running through my head at three am when I finally climbed back in bed and I thought to myself: THIS IS ALL A PROCESS. I also thought to myself: I AM SICK OF THE PROCESS. I wish it were like a merry go round where you could just stop the insanity and jump off and it is all erased, but then what would I/we learn from our process? I finally feel asleep thinking about the process and wanting to run to my blog at three am to write. I resisted. My blog has become my one true friend that really gets me. The friend I can pour it all out to and not have someone tell me things like you are fine, my blog just listens and I am in control and if you know me I love that! I woke up at nine am because I couldn't sleep anymore and my brain began to work all over again. If only we have a little switch on the side of our head to flip it off. No such luck.

The more I thought about the process and before my strange slumber I thought about the process and how all of life is really just that, a process. The process of growing up in, at times, a hateful world. Mean children while you make your way through elementary school. The process of being a part of a family and fitting in there. The process of Jr and Sr high school and fitting in there all the while wondering what the heck is going on. The process of college and all dealing with life on a whole different level. The process of having all the right cloths or being cool and fitting in somewhere. The process of finding a mate and getting married, having children, raising children, working, making friendships, getting hurt, having health issues, and the list could go on and on. I am sure you can add many of your own processes. You survive all the processes, somehow, we all do. All of life is a process and when I think of it I made it through all the hard parts so I am sure I can make it through the process of finding a way to sleep. It will all work out, it always does.

In the end, and only this morning did it hit me, I figured out what the process was. Do you know? Think about it for a second or two.............The process is called life. It can throw some hard knocks your way. It may even eat you alive at times but you have to try to focus on the good things through your process. Does that mean we forget all the hard parts of the process? No! Those are the parts that make us who we are and mold us either in a good way or a bad way. It is up to you to decide what you will let the process do to you. I believe the process never ends until the day we die. We must live each day to its fullest and take the bad when it comes, learn, and move on. We must also savor the good as well. In the end it is all our own make up, our own lessons, and our own life. Here's to hoping for a good nights sleep tonight or maybe a little nappypoo to catch up on the six hours I lost last night in the process.

God Bless!


Monday, November 26, 2012

The Most Wonderful Time Of The Year...Or Is It

Well folks it is that time once again. Sing it, It's the most wonderful time of the year, or is it? People rushing around trying to make all those purchases they think will make their life, and the lives of others, oh so much better only to realize after they get something they want something bigger and better. That time of the year of eating like pigs and making New Years Resolutions you will never keep to lose all that fat. That time of the year for planning get togethers with people who really don't care about seeing one another but they have to do it because the world tells them to do so. That time of year we all are oh so nice to one another when we are in public but when it is all over we go back to being rude and obnoxious. Ah yes it must be the most wonderful time of the year. Don't get me wrong I know there are some people who do love this time of the year. Those who do like getting gifts and appreciate them all. Those who watch what they eat because they don't want to have to make those New Years Resolutions. Those who have close families who love to get together and they really do care about one another. Those who are kind in public all year round, there still are a few left out there.

I wonder if I have to list what all the stress of this month brings to a person with chronic illness. I can leave much to your imagination as to what happens and if you want further explanation just read some of my past blogs and insert HERE, times ten for some.

I have a friend who always made me laugh year after year and I never forgot how she would say it to me. "All that crap on television is so unrealistic. Everything is perfect. The food, the decorations, the happy people all getting along, that is not how it is at all. It is a big time of stress and arguing and fighting. Think about it the next time you watch one of those so called perfect commercials." Insert belly laugh here. How true! I thought about what she told me so many years ago and every time I see those commercials this time of the year. Over the years I have more and more realized how right she is. Scrooge? I don't think so. Just a realist who see's the world for what it really is. Am I a scrooge? If I had to answer that for myself I would have to fess up and answer, yes. Truthfully ever since one of my best friends and a man I loved dearly was killed on Christmas Eve many years ago I have questioned everything about life. The worst lost I had ever experienced and it had to happen on Christmas Eve, the most wonderful time of the year. For me not so much after that. A part of my heart died and was buried along with Tim, a part of my heart that had gave me hope for the future and after he died nothing ever seemed to be real to me anymore. I didn't then and I never will understand why he was taken. There really wasn't any reason as to why he had to go. I struggle with that one everyday. Yes, that was the year Christmas changed for me and I became somewhat of a scrooge. I remember it clearly like it was yesterday and I was 19 when he died. This year I will be 50 and the pain of losing him still makes this time of the year unbearable for me. I get through every year somehow with the help of Rich and the kids especially the little ones who bring back that excitement I use to know.

The focus. The focus for me at Christmas time is the hope I have and it comes from a tiny baby in a manger. If I did not have a faith in that birth many years ago I am not sure I could have made it through the most wonderful time of the year for so many years. Knowing I will see Tim again helps me to make it though another year of the most wonderful time of the year. I will make it the best I can and I will enjoy my immediate family to it's fullest, as always. We will celebrate the birth of our Savior and keep hope in what ever comes our way in the coming year. Like I always say, "God is good even when things are not so good." So bring on the cheer, bring on the stress I am armed and ready and it is all because of a tiny little baby!

God Bless!


Thursday, November 22, 2012


I am thankful. I am thankful everyday but I am sure in a much different way than most.  Last night at our church service our Pastor preached on being thankful. His message hit home for me because it started out with all the obvious things we are thankful for but what about the little things? You know like electricity if your power goes out and you wish you had it, along those lines. I find it curious how on the occasions that I am able to go to church the Pastor preaches on some of the things I think about and last night was no different. Well, for me, everyday, I thank the Lord for drugs that help me make it through a day. I am thankful that God gave me a husband who understands what I go through when I very well could have ended up with some jerkface who might not understand. I am thankful I am able to not work and my husband has a job that allows me to stay home in order to take care of myself. Of course, I would love to be able to work but for now my health does not allow it. I am thankful for the obvious, family, shelter, living in the US of A, all the stuff we are all thankful for but for me it all means just a little bit more as my life is very small these days.

Today I am thankful. Thankful that we are having our Thanksgiving with our family tomorrow because I woke up at 4 am with a slight migraine. I warded it off but i am still feeling wiped out. I am thankful we are not having a house full so I can rest a little bit today. I am thankful Rich will be here today to help me prepare food for tomorrow. I am thankful we will have the day together, alone! We have alone time during the week but it is different because Rich usually comes home tired and has used all his words for the day by the time he gets home. I am thankful for scrabble, the board game, because I am going to kick his butt in a game of it today. I figure if I am able to beat a Michigan Grad then I for sure can beat a business man with ease, at least I hope I can. I am always thankful when I beat Rich at a game because he is so competitive. Wii bowling, I am the champ, beating him brings me great joy. I am thankful Richie and Leah will be home this evening to share some of their time with us. I am thankful for coffee. I am thankful for chocolate. I am thankful for children. I am thankful for my pets. I am thankful for makeup and hair products. I am thankful for stretchy pants. The list could go on and on but you get the idea.

In life it is not about the grandeur. It is about the small things combined to make the big things. If we look at life it isn't about the large stuff it is that combination of all the little stuff. The things we want compared to the things we need. The kindness of a friend or a stranger in the smallest of acts that can make our whole day happier. It isn't about buying someone a large gift or gifts, but about giving someone a piece of your heart to make them feel loved and cared about. I always say if we do not care about one another what is the reason we are here? If we are too busy to care then we are too busy. We cannot care about everyone that crosses our path but we can about some and hope that the ones we are unable to show love to are being showed love by someone else. It is the circle of love thing. I hope that we can all keep the spirit of thanksgiving in mind until thanksgiving day next year and remember the small things in life and not the big. Let's be thankful!

God Bless!


Tuesday, November 20, 2012

I Am Blessed

Before I start I want to make clear, I know I shouldn't be writing this, that being said I am writing it anyways. Lol. Last time I did this it bit me in the tooshie. In some odd way writing this stuff down helps me to process all that is going on even on the good days, if that makes any sense.

Yesterday Rich said he was happy that I was I seemed to be doing more and that I must be feeling better. I answered him with a, "yes I am." Little does he know I started taking the Tramadol on a regular basis once again and for some reason that is like a miracle drug for me. I have no idea how it works but it definitely takes the egde off of the pain and gives me more energy. I wonder if it really gives me more energy or if I have more energy because I have less pain? Pain is exhausting to say the least. If you have ever had chronic pain you understand this. I am hopeful this will make it a good holiday week and weekend since our family will all be together. I am excited to spend some time with Richie and Leah once again but being sick can wreak that real fast! Having them here is the best medicine ever for me. I love having all of the family together in the same room. I am blessed!

I also have started to take the same pain med at bedtime which helps me to get a better nights sleep. I am in a good cycle for now in regards to my neck pain and I am trying to be aware and not do anything that will aggravate it. Even the smallest of physical labor can send me into a tail spin of pain and migraines for days. I also began taking 500mg Magnesium which is suppose to help with migraines so we will see if that works or at least cuts the migraine frequency down a bit. I am hopeful and blessed!

Tomorrow I see the foot doctor once again. If I can get this foot pain under control I will be all set. The pain has become excruciating once again to a point of where I can hardly stand it. It is the kind of pain that you want to pull your hair out of your head. Stabbing, gnawing pain that at times is unbearable even on the pain meds. I am nervous about going back to the doc once again and having to hear, "Just give it time." Ya, I bet if the person treating me had pain like this they would never be able to handle it for one day. That is the one thing I have the hardest time understanding about the medical community. When it is just another patient or just another case their answer is always to "give it time." I always wonder to myself, if I was your mother would you say the same thing to to her? If I was your wife or husband would you say the same to them? If I was your child would you say the same to one of them? Just "give it time?" I think it funny because many times when you go to the doc you aren't in as much pain or you "look good" so how can you possibly be in pain? I wish I could let a doctor jump in my body for a week and feel what it is really like, then lets have a consultation about how your week went doc! I sure cannot say this about my regular docs that I see because they are all wonderful and understand what is going on with me but when I, or someone I love, has to see a doc for a specific problem it seems the "wait and see is always the answer. Annoying! I am to the point of not going to the doctor anymore unless it is something that I have to go for, my foot included. Ugh, not looking forward to tomorrow but I have come to a decision. Next February is one year since foot pain D-day. February 10 to be exact. Funny how you can remember things like that. I am going to tell him I don't want to come back to him anymore until the one year mark and then we will go from there. It is a waste of my time and money to continue to go every month and hear the same thing. I feel pretty much over it and if I have to live like this then I guess I have to buck it up and deal with it. Period. I am still hopeful for a cure after all these months and even with the ongoing foot issues I am blessed!

It is Thanksgiving week. I have much to be thankful for. Being chronically ill is NOT one of them, but what I have learned is. Spending time with the people who love me and truly understand and support me tops the list of blessings. All else is petty crap. I will continue to keep a positive mind set even when I get frustrated with all I must face on a daily basis. I am blessed!

God Bless!


Thursday, November 15, 2012

Pain, Pain, Please Go Away And DON'T Come Back Another Day

Have you ever had pain so bad it makes you shake and tremble? Have you ever had pain so bad that you are up all night hurting so bad you wonder how you are ever going to make it to the morning light? Lately I have had a lot of trouble when it comes to laying down to sleep. My cervical spine is messed up once again. I thought after the surgery I wouldn't have to deal with this kind of pain ever again. I have since found out I am wrong. I have researched a little bit on the subject of having other discs go bad after a fusion but I haven't done to much digging into the subject because the little I have read has made me cringe. Even the thought of having to go through another fusion is excruciating for me. I have had a few surgeries mind you but the fusion ranks up there with the sinus surgery as being the worst pain ever. Truthfully I would rather give birth to all three of my children, drug free, than have to face another cervical spine surgery. Yes, it was that painful for me and the recovery was torture. I cannot say I ever got to a place of no pain but at least I was better than before the surgery. I got to a place where I didn't have to think about my neck with every move I made. Of recent I am back to that place of having to think before everything I do physically. It doesn't matter what I do, even the simplest of things, that can put me back into this hell of pain. The pain was so bad last night that I can hardly see straight. Yes, I have issues with blurry vision on a daily basis but over the past few months that is even getting worse. My memory has also gotten much worse, so much that Rich has even noticed. And I think I am so good at hiding things which I am for the most part but hiding that you are forgetting the simplest things is not possible. I had to come clean to him and tell him my memory is getting worse. When I did, he said he has noticed it for a while. You can see what a sweet man he is because he never once has told me I am losing my memory he waited for me to tell him. He tries to hard to make things easier for me as he knows how much I suffer on a daily basis. With this neck problem I am trying not to let him know how bad it is in fear that he will worry about me even more than he already does. The stress of the business is enough for him on most days so adding to that stress is not something I like to do.

When I think about symptoms I endure on a daily basis I wonder to myself which one is the worst one of all? When I am weak I think it is that one. When I am extremely fatigued I think it is that one. When I am in pain I think it is that one. When I have a migraine I think it is that one. When my foot is giving me issues I think it is that one. The list could go on. Today I deal with the pain. Pain I don't like. Pain that brings back other painful memories that I like to block out of my mind. I have pain meds I take when I hurt this much. I hate to take them but the reality is I must. I have a terrible problem of thinking to far into the future. When I am on the pain meds all I can see and worry about is if I will have to stay on them for a week, a month, or maybe even longer. I don't like the idea of having to take something else when I have been working on cutting other drugs out. I have to fight this dependance on drugs with all my might. I have to tell myself live in the day if you are in pain you need some help and that is okay. Today you have to take them so maybe tomorrow it will be better and you won't have to take anything except the Tylenol Arthritis. The mind game continues as my body fights against my sanity. Today and only today I am thankful for pain meds! I will continue to hope and pray that tonight will be better because right now that is all I have. Hope!

God Bless!


Wednesday, November 14, 2012

The Price You Pay

Here we go again. Just the other day I wrote how things were going well knowing all the while I was writing that entry it was going to bite me in the ass. I am almost always right when it comes to my chronic illness. I think most who are plagued with illness would agree. You know when something comes out of your mouth or you write something down, in some odd way, you should not be saying or writing it. It is a never fail price you pay when you are ill.

My price caught up with me yesterday and last night. My foot problem has become somewhat of a way of life for me. It is so odd to me that when you experience a certain kind of pain that after a long period of time it becomes a way of life for you. The pain in my foot has. I am so use to it after nine months I can hardly notice it is there, until yesterday. All day I was receiving stabbing pain being sent to my brain that literally would send out words of pain. Ahhhh seemed to be the word of choice and a few times the words of choice were much more harsh, I  will leave those to your imagination. Last night I decided to break down and ice it which helped to some degree. It is funny because I will endure the pain for as long as possible before icing as I almost feel like I have it prove a point, to myself or to the illness. The strange way my brain works after all these years of pain. In my head if I ice that means the pain and disease win. If I don't ice and endure the pain, screaming and hollering at it, and hoping it goes away without some sort of treatment, I win. I am telling you it is a brutal game that I hate to play. The pain won yesterday. I couldn't take it any longer so out came the ice. The best part is I made it through the day. There are days that is the goal, to make it through the day.

I had another painful reality hit yesterday. The reality that I have to tell Hospice I cannot come back to volunteer. I have been putting this off for a few years, filling out the papers every year in the hopes I can go back and cut hair for the patients. I looked at the papers yesterday that I have been hiding behind the calendar for a few weeks trying to avoiding the reality and pain it causes me. The realization that I cannot do it hits me hard. I filled out the paper and told them to take me off the volunteer list and that I was unable to return. This has to be one of the hardest things I have ever had to "let go" because of chronic illness. I feel it isn't fair to continue to lead them on that I will come back knowing all along in my head it more than likely isn't going to be possible. I cannot have others depending on me for a hair appointment only to be disappointed because I must cancel due to this illness. It would be fine if it were other circumstances but these people may be gone in a month, a week, or a day. A haircut to them means more to them than most of us. I have even had the honor of cutting a few heads of hair on people who were hours from death. It was humbling to hear the family so grateful because they wanted their loved one to be buried looking like they did when they were fully living. You can see why I will miss this and why it is sheer torture for me to have to resign from this volunteer position. I know I can't do it for now but I hope someday I will be healthy and strong enough to go back. I have to keep the hope!

Last night, bedtime. For me sleep is important but my neck has been giving me horrible issues when I sleep. I forget about it during the day because being upright helps take the pressure off the discs. This is where my problem was before when I had the first surgery to fuse the two discs that were rotted away. My biggest fear is that more discs are doing the same thing as this pain is getting continually worse. Last night was no exception. It was probably one of my worst of late. I tossed and turned all night trying to get the pain to go away. When you are in pain you will sleep in many contorted positions in order to find that place where the relief comes. Last night was one of those nights I was unable to find that right position. I woke up feeling like I didn't sleep a wink. The worst part for me is I am not a napper like many chronically ill people. I am good at resting but taking a nap is just not my thing. Today I will deal with the pain and hope tonight is better. Pain like this is exhausting so I hope for good sleep tonight. It has to be better and I must keep my focus on better sleep and less pain. If I don't I will drive myself crazy. Chronic illness does have a way of doing that you know. It can make you think you are bonkers if you let it, you mustn't! You must always stay one step ahead of the game. Foot pain? Better today! Hospice? Something else will come along. Neck pain? Tonight will be better. It is all a matter of mind over matter! I will look forward to Friday when my little love Hunter is going to sleep over. I can see him already jumping on the bed in between Papa and I. Laughing and telling me how much he loves us. I can hear him in the morning whispering in my ear, "Nana it is time to get up! Nana it's time to get up!" Me saying, "Nooooo go back to sleep," and him laughing at me. I will focus on all the good that will go on between now and then and I will tell myself, "Yes, things will get better." How do I know? Because they always do!

God Bless!

(I forgot about the dizzy spells I have been plagued with the past few weeks but I will save that for another entry.)

Monday, November 12, 2012

Things That Make You Go Humm, Humm, Humm

I am happy to report I haven't written in my blog the past few days because I have been feeling pretty good. I always hate to say that, let alone write it. You know how it is as soon as it is on paper or comes out of your mouth it already starts to bite you in the butt. You can almost feel it starting to make up a plan on you as you write it. Humm.

When I tell people I am feeling well it is like they think I have had the miracle cure hit and now I am back to my old self and able to do it all. It is so hard to make the real world understand. There are times I hate to tell certain people I am feeling well because the first thing I get is, lets go here, lets go there, you need to come over. "Umm do you realize the energy it takes me to, just stop over?" "Oh and did you forget where I live? "I have to put the brakes on that real fast at times with certain people. I want to shout "WAIT  a minute. I said I feel better but you must understand that if I do all the things you want me to do with you I can guarantee a flare and a backlash that you don't understand and I am pretty sure you won't be there to take care of me when I have that flare. It isn't a kind of better that means I can do whatever I want, do you understand?" Humm
(Yes, there are times I get very angry because these are the people who should understand.)

Funny how when you are chronically ill the world, no matter how much you tell them what is going on with you, only wants you back to the person you use to be. How in the world do you explain that more than likely it is not going to happen? Believe me, I want it too. I really do, but it seems the odds are stacked up against me. The people who want you to go away for a weekend but have no understanding when you tell them, "if I go with you for the weekend I will be sick for a week after." I might get a horrid migraine that will take two to three days out of my life. I am not willing to use that time with you because it takes away from Rich, our children, and our grandchildren. I usually get a deer in the headlights look and a comment that goes something like this, "Well, all you have to do is come and you can just sit and rest the whole time."Nope, they didn't hear a word I just said." I have almost given up on trying to explain any of it anymore. In the words of Rich, "People will never understand hon but I do." Yes, he does because he lives with the truth of it all. the truth that no one else knows or cares to know about. Humm

On the flip side I try as hard as I can to be on the healthy side of things. I wonder to myself if I were one of my friends and they were the sick person how would I handle it? I would like to think I would be compassionate and understanding. I would like to think I would not push them in any way, shape, or form. It is easy for me to say I wouldn't do any of those things but would I? I hope I would be able to understand and not make my friend feel pressured into doing anything they did not want to do. I hope I would understand that I have no idea what they are living with. I hope I would only do good for them and try to feed their soul with my love and understanding instead of putting unneeded pressure on them.  I hope I could feel or at least try to feel what they are going through. I think I would ask them questions, a lot of questions, and wait to listen to the answers before I came to my own conclusions as to what it feels like to live with chronic illness. The ups and downs that no one knows about, I would want to know. I hope that I would know that just because the friend looks good it doesn't mean they are. I hope I would realize and believe there really is a raging fire going on inside their body instead of looking at them like I don't.. I wonder if I would be able to be this friend to someone who was suffering from chronic illness. Humm

There are many things I wonder about myself and about other people. It is just human nature to do so whether you are ill or not. As human beings we have some weird way of doing that, you know? It is really quite ridiculous if you ask me. I wonder why we can't take people for who they are and for where they are instead of questioning them so. We all have our stuff to deal with in one way or anther. We must learn to understand one another and love one another without strings attached. I have come to the conclusion that people take things way to personally. For example, I can't go away for a weekend with you, that has nothing to do with you, so don't take it as it does. In my heart I would love to go hang out with you all weekend it is just that the payoff is not worth it for me. I would love to go to a party and have a few drinks and get crazy but for me the pay off isn't worth it, it isn't about you. It is my hope that in reading this, if you have a friend or family member who is chronically ill you will remember what I wrote the next time you feel the need to pressure them into doing something. Don't make them feel guilty. Love them and understand. Don't leave them feeling bad or guilty because you decide to take it personal that they can't do something. Don't allow them to leave with that one strange word in their heart and mind, Humm.

God Bless!


Thursday, November 8, 2012

Bye Bye Drugs

I have an new plan as far as all the medications I am currently taking. I have made the decision to cut out a few of the medications that I have the okay to do from my Rheumatologist. I figure if I cut them out and I begin to get more symptoms I can always go back on them if need be. I almost feel some sort of liberation and control since I made this decision. My mind set is to not think about what I am doing and just do it. Every time I think about my symptoms returning I block them out and try not to ask myself, "Am I getting this symptom back or am I getting that symptom back?" I have to think in different terms. The one day at a time will come into play here and be very valuable to my mind and my soul.When I feel a symptom I am going to try to block it out if at all possible.

The recent drug I cut out of my regimen is Plaquenil. It has a side effect of blurry vision so when I cut the evening dose out a few weeks ago I didn't think anything of it because I was still on the morning dose. I stopped the evening dose and would stop the morning dose next. I figured if my blurry vision was going to get better from stopping this drug that could only be a plus. The crazy part? My vision has become much more blurry since I stopped the morning dose. It is going to be very interesting waiting to see what happens from stopping the evening dose as well. I am hopeful that over time my body will adjust to not having this drug running through my veins and I am hopeful my vision will get better as time goes by. I am very hopeful and optimistic. I am keeping the vision of less drugs as my goal to the finish line of this race. My vision may be worse but I have to believe getting off some of this poison will help me feel better. I am feeling more morning stiffness over this past week but I am hoping it is just the weather and it will even itself out once the weather is at an even keel, if that is possible in Michigan.

The next drug on my list to delete is the Prednisone. This drug is brutal to try to wean off from but I have done it before and I am hopeful it will go better than expected, if not then I will have to increase the dose and just deal with it. Prednisone is the drug the chronically ill person hates to love. You love it for its miraculous ability to help symptoms disappears quickly and you hate it for the other side effects that come along for the ride. Prednisone is the one drug I take as soon as I get up in the morning that helps me within an hour or so. I hate to say I do love this drug at a low dose but I also know what it does to my body. It is not the best drug to take as it causes many issues but as with any drug you have to outweigh the risks when you are ill. Do you want to feel better or do you want to live in pain? The question is easy to answer many times. I am hopeful on cutting back on this drug. Hopeful that even if I can't get off it I can at least cut out a few milligrams. I am ready to take more control over my illness instead of always depending on the drugs to do it for me. Over the past six years the drugs have helped me immensely. I am grateful to have had them when I was very ill. I am thankful they are there on my really bad days but I feel I am ready to at least try to take more control of this illness without the drugs. I have started yoga which I know is good for me, body and soul. I try to eat well but I am a work in progress there too. It is a never ending battle that I intend to win even if it takes me a few years to get it right. I will not stop until I cross that finish line and become the winner!

God Bless!


Tuesday, November 6, 2012

Today WE Vote

You cannot be everything to everyone but you can be someone to one. I think of this a lot in my small world especially when disaster hits and I want to jump in the car or on a plane and go help people. I know it isn't possible for me to do but it saturates my heart none the less. I hear of so many places you can send money and my heart and soul wish I were able to send something to all the causes but it just isn't possible. Money is a struggle for us as well but we do what we can do. This isn't about that it is about the burden I carry when I am unable to help. The wanting to and not being able to. How hearing story after story of people suffering and not being able to do much. I wonder to myself what if it were my family or someone I know suffering like that. I hear of FEMA and how they are suppose to help people but then I hear how they are no where to be found. I wonder why our country is not ready in an instant to respond to a disaster. Why is someone not organizing this before a disaster starts? Why are people starving, thirsty, and cold? These are the issues with government that plaque me not only now but in years past. This is not a political blog entry it is just one American to another asking what has happened to us and why can't we take care of our people the instant a disaster hits. I still think it I should have ran for some office to get some of this stuff figured out, sigh. It pains me to hear of the bickering and hate that goes on between parties and beliefs. We live in a America for gosh sakes the greatest country in the world and we act like selfish brats. It annoys the hell out of me when I know people are suffering.

In writing all of that I wanted to make a correlation as to how this would pertain to chronic illness. When you are a highly sensitive person and you worry about others every time you hear of a need it affects your health. It doesn't matter if you are healthy or chronically ill, this is a fact. The problem is when you are a highly sensitive person who has to dissect everything to the core it affects you in physical ways. It gets exhausting when you worry about others and feel so helpless. I have a hard time understanding how people can be selfish. I have an even harder times listening to anything negative. This is why our country is so screwed up, we can't work together and accept one another for our beliefs we have to lash out at one another and get mad that someone doesn't believe as we do. I have read some awful things on facebook in the past months. I have read awful things and watched and heard awful things on the television the past few months. I am both angry and saddened at the same time, but I have to learn to let it go, something that isn't easy for a highly emotional person. The stress of this election year has torn me apart physically, mentally, and emotionally. I don't like it at all. I can't wait for it to be over. Over in the hopes that life can move on in a good direction and I can start to get back to some sort of normalcy that isn't so hard on my chronic illness.

Today I vote. Today you vote. Today we vote. It is up to us/you. I don't care how you vote I just hope it is a vote from your heart. A vote that comes from what you believe, and not a vote of hate. Voting is a privilege that we all should be honored to do. I have been thinking about this and my thought is: If you are happy with the hope and change we have had, then vote. If you are not happy about the hope and change we have had, then vote. If you don't care either way, then vote. Pretty simple. I won't hate you if you vote different than I and I hope you won't hate me for voting what I vote. We are all entitled to our own beliefs and we all need to learn to accept one another for what we believe instead of tearing one another apart. I hear from both parties we need to work together but I can tell you right now if we continue the way we have for the past few months I don't see that happening. I hope and pray we can, that's all.

God Bless!


Monday, November 5, 2012

Doctor Dread

Ahhh Monday. The day everyone starts their new week more than likely at work, maybe chasing children, or catching up from the weekend. This is one of my dreaded Monday's. My six month Neurologist appointment. Needless to say while others stress about work and living life I stress about yet another doctors appointment. I am almost sure if you back track in my blog there are many more entries just like this one. They could be about my Neurologist, Rheumatologist, or even maybe about my yearly physical. You see, when you are ill an ordinary doctors appointment  is not so ordinary.

 My fears consume me on the day I have these appointments. I have been doing this for so long now that I have learned not to allow these appointments to ruin my whole week prior to the appointment. Every time the thought of an appointment enters my mind I block it out quickly with a good thought such as my family or I try to get busy with one of my hobbies. Needless to say on the day of the appointment that is impossible as I am writing notes for the doctor and trying to remember all I want to talk with him/her about. I try to take notes in between the six month appointments of any changes which are either significant or insignificant. It seems the things I feel are trivial may be a huge piece of the puzzle. I learned this from my Rheumatologist, the hard way at times. I didn't tell her something only to find out six months later I should have told her about it the last time I was there. Yes, I am a work in progress when it comes to these appointments but after six years I feel as though I am finally getting a grip on how to do them right. Maybe?

My fears are not only the appointment anxiety I feel but the wonder if my doctor will find something new. This time my eyes have been giving me more issues. I have had an increase in migraines so I fret is there a reason why? Small changes to some but monumental to me. I stress that I will leave the same way I did the last time, no changes and all is good. Okay, so what does that mean? I still am not normal. Will I ever be? Why would the same ole same ole stress me out? It is like you go wanting to find something new so you can have the hope that it can be cured, or just the answer as to why? Why are my migraines increasing? There has to be a reason. I am sure that makes no sense. Who in the world would want to find something? You can only understand this if you suffer on a daily basis and sometimes get no answers as to why you suffer.

I have written it before and I will write it again, The real world will never understand the ill world, but I can also turn that around and write that the ill world will never understand the real world, anymore at least. I hate that I have to write that. I can remember being in the real world but it is a distant memory. A memory like you have when you go on the trip of your life. You are able to remember little parts of it but it is impossible to remember it all. It is over. You enjoyed your time there but reality and life are what you live in now. It is no different with chronic illness. You get back from the trip and the real world begins, work, schedules, etc. With chronic illness it is no different except that the schedule is different. You have no control because you do not know what is going to happen from day to day. You might be on top of the world one day and do as much as you can and the next day is the complete opposite. You are unable to do anything. Can you see the contrast between the two? Chronic illness is not only a physical game but an emotional, psychological game. You have to be strong. Stronger than you have ever been in your life to be able to handle all that is thrown at you. You dream of being able to have your normal life back but know in the back of your mind you probably won't.

I am not complaining at all. Really! It is what it is. I am stronger. much stronger than I ever thought possible. When I think back on when I first became very ill I didn't want to be alone. I needed to have Rich by my side and there for any little problem, it wasn't easy. I felt like a helpless child who was dependent on someone for all my needs. I have sense come to grips with illness and I am much better and not so needy. In fact I think my independence is much stronger because I almost feel like I have to prove I can do it now. I don't need nor do I want to be coddled. It is liberating to write that. I don't have it all figured out yet but I am getting there. Writing that it makes me realize I am stronger than I think I am for today. It is just a doctors appointment not world war three. I can do this! I know when it is over I will feel relieved and refreshed no matter what happens. I always do. So, once again my blog saves me. Once again writing down all the struggles I am facing at the moment I am writing them gives me hope, peace, and just a little more acceptance. Knowing it is all going to be alright in the end.

God Bless!


Saturday, November 3, 2012

Sleep Craze

It has been a brutal past few months. I have weaned myself off Xanax successfully but I must admit I do miss it terribly. It has been quite a few weeks since I have been off it but the effects of withdrawal are brutal, or are they?  I am actually trying to figure out if it really is still withdrawal or the new meds my doc presceribed for sleep that are killing me. Whatever it is, it is brutal to say the least. Since I stopped the Xanax my sleep has been messed up big time. I sleep but I wake up all night long tossing and turning. I wake up in the morning feeling so wore out I can hardly function let alone think straight. Rich talks to me and I feel like I can't hear him or process what he is saying. The new drugs I have been taking are low dose antidepressants. I think I may have written it before but and I truly believe if you are not depressed and do not need the extra chemicals these pills put in your system they can wreck havoc throughout your body. I am proof of that lately.

The first drug I tried was Trazadone. It is used very commonly in a low dose 25mg for sleep. You take it just before bed and you are suppose to sleep better. Well, let me tell you I slept terribly the first time I took it. I tossed and turned all night. I kept waking up choking which is something I do without drugs but it had hightented in intensity that night. I had chest pain/heaviness and my heart was racing so bad I felt as if it beating out of my chest, enough to keep me awake a lot. I tried this drug a few more nights and knew that the zombie trance I was in all day and the nightly side effects were not worth it so I stopped. I made an appointment with my doc on Friday and she switched me to another brand of antidepressants, Elevil. I tried it last night and boy and I sorry I did as my chest was tight all night and still I woke up many times. I had many of the breathing or should I say non-breathing episodes wake me up on this drug too. It was awful. Oh don't worry it doesn't end there. I also woke up at 6 am with a migraine, not as bad as the usual ones but a migraine to say the least. I have been agitated, anxious, shaky, and ill all day. It is  making me crazy. I have to believe these drugs are not for me and have made the decision to stop them and not try anymore.

I started to wonder if my shortness of breath, extreme weakness, and droopy eyelid being worse may all be because of MG and mixing it with these drugs. I did some research and read on a few sites that YES theses drugs can interact with MG. Needless to say I am happy I am seeing my Neurologist on Monday. I cannot go on like this. I am still so confused, I feel sad, and this is not me at all.  I will say it again, you cannot give antidepressants to a person who is not depressed, let alone one who is plagued with autoimmune diseases that already control every function of a persons body. As I have said many times before I do not control my body, my body controls me and it controls my life. It gets annoying especially when my kids want to come over on days like these and I have to tell them no. This starts a vicious circle of guilt for me but worse off is the fact that now my children have to worry about me more. I try to hide as much as I can from them but when there are days like this it is to hard to do. Plus it takes a lot of energy to hide it and pretend. On days like this I do not have that kind of energy to spare so I have to be truthful. This hurts more than the disease.

The rest of the day I will work on getting this evil drug out of my system. I will continue to drink lots of water. I will take a nice hot bath and hope it draws those toxins out of my pores. I will stay focused on the good. I will continue to keep the hope that I will get a good nights sleep one of these nights so I am not dragging so much. Most of all, I will never give up. I have to believe it is all going to be okay in the end. For now I look forward to hearing what my Neurologist has to say about all of this and press with life as usual!

God Bless!


Thursday, November 1, 2012

Early Wake Up Call

This morning I woke at five am. If you know me at all or understand the struggles I have on a daily basis you know that sleep is extremely important in order for me to function properly. I concur this must be true for most if not all chronically ill people.

There are other mornings, many, that I have woken up around four or five am and lay there and finally fall back to sleep until nine or ten am. Why was today different than those days? I performed the usual routine, bathroom, excedrin migraine for the slight headache that woke me, then lay back down and try to fall back asleep. The slumber decided to stay away. I felt some weird voice telling me to just get up, so I listened. Upon reaching the kitchen to make my coffee I had some weird sense of anxiety. Ever since I have stopped taking the xanax for sleep I have not been sleeping well at all so I wake up almost feeling like some alien from another planet. I feel like I can't concentrate and I am in a strange sort of fog. I feel sadder than usual. I am just not my normal jolly self. I tried to take the other med that the doc gave me in place of the xanax but it has done nothing but make me feel like a zombie during the day and I really didn't sleep well at all on it so I stopped that one too. Plus the dizzy spells are not worth the trouble. I can't figure out if I am still feeling the withdraw from the xanax or if I am having awful side effects from this new med that is probably still running through my veins.This sleep issue is still a struggle for me as I still do not understand why a doctor would rip a drug from me that was working well and switch me to another that would cause havoc on my body. I believe chronically ill people must be looked at in a whole different way than the normal world. I am anxious for my next appointment to discuss this with her face to face.

I sat down with my cup of coffee and read a few papers I had laying around. I turned on the tv and after a bit I decided to turn the channel and run from all the news that can bring me down so fast. I try to separate myself from the negativity of the news because it radiates deep in my soul, it is easier to stay away from all of it. I checked the guide and saw Joyce Meyer was on so I caught the tail end of her show. It ended so I checked the guide again only to find her show was going to start on another channel so the voice told me to listen. Listen I did. She started out talking about people, troubles, depending on God, the usual, but then she shifted. She shifted over to grace. She was talking about grace in the usual sense but then she turned to to people who may be ill and waiting on God to be healed. She said you people are the ones who have and need even more grace. Instead of worrying about being cured keep your focus on God's grace, the extra grace that is there for you. Maybe you are not being cured but it will happen, you just have to continue to believe and lean on God and his extra grace. If you know me at all you know I already know this, but it seems with all that is going on right now I needed to hear this more than usual. Look to God and not the world. Don't compare what others are doing or ask them for their opinion just lean on God. This is one area that can be hard for me as I watch other people have lives and jobs while I feel trapped, trapped in an illness I want to break out of so much. Grace! Remember Grace!

I must say I did have some sort of problem with this. I have more grace because I am ill or do I just need to believe I have more? To me that is like telling someone God loves me more than he loves you, I don't believe this is possible. All I know is what I have known all along: God's GRACE is sufficient enough. If I didn't believe this already I wouldn't have been able to make it this far and still be as sane as I am. This is what gets me through each and everyday. Whether you believe it or not is between you and God, as for me this is it. While I sit here writing this I wonder. Wonder about a lot of things. I wonder if Joyce is right and then I wonder if it really matters what she has to say. I believe it is between me and God, for me that is enough and I am thankful for his grace no matter what and now I know why I had a early wake up call today.

God Bless!