Friday, August 31, 2012

Noticing A Theme Here

I can't help writing this again today as my foot is almost to the level of unbearable pain. The scale of 1-10 in the doctor's office is pushing toward the 10 but no tears so 7 or 8 might be about where it is. Believe me if I am writing that, it is bad. I just don't know what to do anymore. Cry, but that doesn't solve a thing. Go back to the doc, who will tell me what I already know. I am at a loss. I do not want to sit on my butt all day because I will go bonkers especially since I am one who does not like to sit around and do nothing. I putz around all day doing this and that all the while feeling like I never accomplish anything, but busy none the less. I hate to admit it but I  think that is what I am going to have to force myself to do, and I mean force myself to do, sit. This is no fun at all. On days like this I wish it would all just go away and if that means death then that is what it means. I know no one gets that but for me it is a true reality. All of this gets old, tiring, and exhausting. It brings you to that point of just wanting it all to end, but it doesn't so I push on.
One of my goals for today is that I will be making salsa. I have tomatoes ready to go and I am not wasting them because of a foot problem or because of chronic illness. If I don't make the salsa the illness wins and that just is not happening! So there take that stupid foot and chronic illness nananananahhhh!! That is how it feels every time I accomplish something, like I win and I just have to make fun of the illness for being the loser. I know that makes no sense to many but to those who suffer you all get it.

I know I continue to write about my foot a lot lately but as I do I am also hoping to prove the same point I always write when I come to my blog. The point that chronic illness never ends. It never goes away. The point that maybe one day it is a pain issue that lasts for only one or two days. The point that sometimes it is an issue that last days, into weeks, into months, such as this foot problem of mine. The point that just when you think it may be getting a little better you awaken only to have it turn into even more of a nightmare by the time evening hits. The point that you can become so frustrated as you do everything right to help the issues get better only to have it become worse. But the biggest and most important point of all. No matter what, no matter how much pain you are in, no matter how bad this problem gets, your mind, heart, and soul are much bigger than the problem could ever become. The point that you must continue to believe that just as fast as the problem gets worse it may become better. Yes, I am writing a lot about my foot, but at the same time I am trying to get a point across about the monster that never leaves you alone, chronic illness.

You cannot allow the illness to rule your life. Yes, there are times, like today, where you have to give in, so to say. You have to rest and allow your injuries to heal. You have to take the time, as hard as it is to do, and just rest. You have to tell yourself it is only today and not think of it in terms of days. Today I will rest so hopefully tomorrow I can do more and have less pain. I don't want to rest. I don't! I hate it when the illness has that upper hand but I also realize if I don't rest today my foot is going to become so bad I might not even be able to walk on it and believe me it is almost there. Standing up and putting any weight on it is excruciating right now, it swollen up like a balloon and telling me to sit down and rest. I will get the ice, sit, and do some crafts, watch some crappy tv, or maybe read some of my books. It will be a low key day but a good one none the less. I will listen to the illness today and allow it to be in charge, but only for a while. It will not win!

I write this not to complain and I surely do not write this for any sympathy. I write this to hopefully give others a glimpse of what it is like living with chronic illness. I am in pain in other areas of my body but the foot pain seems to be the dominate pain lately. It is the pain my brain is trying to fight and it is exhausting. I woke up at 10:00 am this morning not wanting to get out of bed. I could have laid there for another few hours but I thought to myself, No! Get up and get going. Life must go on and life must be lived no matter what pain you are in today or on any given day. It is time to start the day and be happy in what ever I am given. I hope and pray you are able to do the same in whatever you may be facing!

God Bless!


Wednesday, August 29, 2012

Can Anybody Hear Me

Remember the part in the titanic when one of the men called out to the people floating after it was silent, "Is there anybody out there?' 'Can anybody hear me?" I don't know why, but that phrase sticks in my head and rings in my ears so much that I think I will make it the new theme sentence of my life. I also hear the part where Molly was in the life boat and said, "Those are you men out there." These two phrases haunt me to the core when they pass through my mind. I guess being a person who would risk my own like to save someone else just makes it hard for me to process these parts of the movie Titanic.

I have to be truthful reading the above is how it really is when you are chronically ill. It doesn't matter how many blogs a person writes, how many times you try to explain it to people, how many times people witness an ill person being ill, it just seems that you are never going to get anyone to understand, unless they live it and possibly if they take care of someone who is ill, even then there are people who just can't get it. Marriages break up, friendships split apart, jobs are lost, etc. It saddens me to no end. I try to explain things in terms that I think are easy to understand, but it seems it still doesn't matter. I feel like I continue to beat a boulder with a child's wooden hammer trying to chip away at little pieces of the living with illness but it always seems the hammer whittles away before the boulder has a dent. In my head trying to explain it makes sense and when I write it I think it does, but I wonder how much of it is misunderstood.

I have said many times before that I write this blog for therapy. It is cheap therapy and it helps me to dissect little tiny pieces of what I go through. It is much cheaper than a therapist, which I am pretty sure if I went to, I would being the therapist to them, so I continue to write. I need to have something to release all of this pain and agony out on, not only for me but to help others who live the same as I do. Rich is a great listener, but I am really careful to let it all out to him because all he does is worry. He is deeply affected by illness so I must admit I even shelter him from some of what goes on with me on a daily basis. It is harder to see someone you adore in pain over your illness. This is the hardest part for me, not the illness, but watching my family suffer.

Today I wrote about how Mrs. Romney looked as she spoke last night while I am pretty sure she was standing there experiencing many symptoms, none of which any of us could see, or ever begin to understand. Who knows maybe her eyes were not working well as MS affects the optic nerve of the eyes, maybe her muscles were weak as she stood in the same place for so long without sitting, etc. I have a deep understanding for what she is living with on a daily basis as I do for many of my chronically ill friends. What seemed like a simple speech to those watching was not a simple speech to her, believe me.

I write this blog. I try to help others understand but I know they don't. When I think about it on days like these I become very frustrated. I want to quit everything and just run away. The misunderstandings of being ill and the world are too much for me to handle. I contemplate deactivating my fb until after the election because I can't take the divided and bitter atmosphere of the office that is suppose to be respected and now is just a game we play, back and forth nonsense, accomplishing nothing except more hatred towards one another. I don't think this is the way it is suppose to be. (I don't need people telling me not to leave fb, really so please don't). I am frustrated for the lack of support for those who are chronically ill. I a frustrated to no end with politics and try to avoid it as much as I can. Stress for the ill can lead to flares and I am not willing to argue what I believe with people who believe what they believe as I think we are all entitled to our beliefs and cannot change one another by fighting about it.

The other day I was watching the View and Robby Benson was on and he was talking about how he had a heart condition when he was acting years ago. He was talking how he had to hide his condition because in the world of acting if you were sick you were done. No one would hire you on because you would be a liability to the companies you were working for. This is the reason that even today Hollywood never comes out and admits when they are ill. Paula Abdul "came out" the other day on Dr Oz with her "secret illness" as she called it, Reflex Sympathetic Dystrophy. It saddens me when stars like this come out. It just shows you how chronic illness comes with a tag attached to it. How unaccepted it is by the world. How can this be? How and why should we be so embarrassed to admit when we are ill? I don't think I am weak because I am ill, in fact I feel even stronger because of it. It has taught me courage. It has taught me how to fight and how to live and know what does and doesn't matter. I am thankful for my illness and quite honestly if I had a chance to change my life and never have had chronic illness I would still want it. It has made my relationships stronger with the people whom I know truly love me and it has made me a better person. I just wish everyone could understand, but for some reason I don't think that is ever going to happen.

I end this blog with a sigh today. I have nothing more.

God Bless!


Tuesday, August 28, 2012

Wedding Survival

I am happy to write that I survived the wedding and I am actually feeling okay. I thought by now I would have crashed and burned more than this but I haven't. I keep wondering if I am still running on energy and stress. It is like someone wound me up like a clock and I cannot stop going. I am still stressed and feel like I should be doing something more to get ready, even though it is over. Weddings are way to much work and society has put so much pressure on these young brides to think they need to have it all at their weddings. I remember when Rich and I got married it was a very relaxing, low stress, and fun day. It was simple and fun. We were all there for one reason to say our vows and celebrate without all the glitz and glam. If I remember correctly our decorations were balloons and they were a big hit with everyone. It was a perfect day. I wish the world could go back to that simpleness but I don't know if it ever will.

The only part of the Steph and Vinnie's day that was challenging for me, when it comes to the chronic illness issues, was this stupid foot. I had a steroid injection three days before the wedding in hopes that I would have a good day without pain and swelling. Well, guess what? Wishful thinking. By the end of the ceremony I was dying in pain and my foot was swollen up like a balloon. I even went down in the bride room and sat down for a bit to try to get the swelling to go down a little bit before our guest arrived but it didn't help. Of course no one knew it but me as I put on the face and made it through somehow. I told Rich we needed to meet our guests at the door when the arrived so I wouldn't have to go around to all the tables at the reception because I had no idea what was going to happen with the foot as the evening progressed. I remember talking to people at the reception but I really can't remember what we talked about because the burning searing pain had my mind in shambles by that time. Oh well, such is life. I kept shuffling my shoes on and off and switched my weight from foot to foot to relieve the pain. I mad it through!

One of the hardest things for me in dealing with chronic illness is that when I am with people, just talking even in a simple conversation, it is increasingly hard to concentrate and stay in the conversation when your body is screaming out to your brain. You are trying to listen and soak in what people are saying while at the same time the brain is telling you to sit down or don't put so much weight here or there, or don't do this/don't do that and you lose yourself in trying to do ten things at once. It isn't like everyone else where you can just talk, laugh, or joke around, because you always have a second "person" so to say along for the ride, the illness. It depends on the day and what part of your body the illness is attacking. One day it may be a joint or two, the next day it may be your eyes, the next day your foot, the next day you are very weak and can hardly lift your arms up. It is a constant battle and being in a crowd is excruciating in more way than one.

Today I go back to the foot doctor to be molded for my second pair of inserts for my shoes. I am hoping this pair helps because the last pair I had just caused me more and more pain as I tried to get use to them. I hate to say it but I feel like I am being pushed in the direction of having to have this problem surgically corrected. It is a very simple procedure but for me it is the thought of having another surgery causes much anxiety. I was told when I had my cervical spine surgery I would be up and around after a few weeks, well a few weeks for me turned into months. It is hard to have to think about any more procedures even when they are simple ones. The nightmare never ends but as I always say I will not give in. I want to, I really do, even as exhausting it is for me to just write this little post. I know that must sound crazy but it is true. You have no idea how many times I think it would be so much easier to crawl in a hole and just have someone throw some dirt over me, but then if I give up it would defy any reason why I amhere. I have to believe God keeps me here for a reason, whatever that may be, suffering or no suffering. I will push on. I know the foot problem will get better. It will! I have to keep that frame of mind or I couldn't make it through each day. God is good even when life isn't so good so we cannot allow our circumstances to define our life. We all must push on! Push on and push on we will!!

God Bless!


Wednesday, August 22, 2012

Will This Ever End

I had an appointment with a new foot doctor today. It went well. I really liked him and he actually spent time with me without whirling in like a tornado only to swoop right out the door like the last doc did. I think it helped that I took Steph with me and she works with him at the surgery center. Hey, you have to use whatever you can when you are ill, this time it was my daughter. Like I have said many times before, for some reason when you see a new doctor and have to go over your history with them you get that deer in the headlight look, like they are thinking there is no way you can have this much going on. Well, guess what? Ah, ya I do. This doc wasn't like that at all. Very soft spoken and kind. He could tell by just feeling my two feet that the left one was swollen and warm, and this is a good day so I told him. It really is compared to this past weekend,

I must admit even though I got more answers as to why I am having such problems it still puts me somewhat down in the dumps. I did get another steroid injection so I hope to have some relief by Saturday but hearing that this could take up to two years to repair itself is such a downer, although I am very happy he said with shots and new inserts I would have some relief as it get better. The biggest problem that annoys me to pieces is that I just received new inserts, from a nameless place, and the foot doctor said are not right. So for almost three months now I have been wearing the wrong inserts which may be causing more of the problem? Seriously? I swear it could only happen to me. I go to one doc and they tell me something, I get no relief so I go to another, and they tell me something else. It gets so annoying and expensive even with insurance. What is a person to do?

I have wrote before that I have accepted being ill. Then, it hits me I haven't accepted it. then, I flip back to being okay with it. Days like today make me sick to my stomach, antsy, sad, angry, annoyed, and just plain pissed off. I have to work hard to keep my head on straight but it seems like just when I think I am doing better I find out more stuff I just really didn't want to know. Today I found out my fascia, plantar fasciitis, is much worse than most of them he see's in woman. Well, of course, it is me, did you really expect it to be a simple solution? Surgery can fix the problem and may be an easy fix for some, but I am not willing, nor do I even want to talk about that option. The past few days the pain has been somewhat better so like I told the doc, "I can live like this, with this pain level." Now if you would have told me about surgery this past weekend I would have said, 'Put me out now and get it over with and hurry up!' Who knows what tomorrow will bring. No one.

Right now, in this moment, I am going to keep my mind on the positive. I got the steroid injection which is a good thing. I have to keep thinking this is good. The doc treated me with respect and not like I am an idiot, which is good. I may have some good pain control for a few weeks from the injection, which is good. I have people who love and support me through all of this even when I have had it up to my eyeballs, which is good. This all will end someday, which is good. Good, good, good. I will continue to keep my chin up when all I want to do is ball my eyes out, funny how pain has a way of doing that to you. It can exhaust you to the core. I am not going to repeat the bad thoughts that are coming to my mind so easily as I sit here typing. I could write a page of those, but I won't. I won't allow it. So for now I press on as all of us who suffer from chronic illness do, after all this all does have to end someday, right?

God Bless!


Monday, August 20, 2012



I am not sure what you think of when your see or hear the word grief. Maybe you think of a loss someone has endured, maybe you think of a loss you have endured, maybe you are grieving right now, or maybe you don't have a clue what grief is in its true form. There are so many different types of grief it may be hard for anyone to define or tell someone what their own grief may look like. If you know how deep I am I had to look up the word grief to get an accurate meaning and here is what I found:
Grief is a multi-faceted response to loss, particularly to the loss of someone or something to which a bond was formed. Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, and philosophical dimensions. While the terms are often used interchangeably, bereavement refers to the state of loss, and grief is the reaction to loss.
Grief is very complex.

In the definition grief is our response to a loss. I am sure most people think of grief in a loss of a person who has died. We have all had to do it, move on after the loss of someone we love. It isn't easy. From what I have seen and witnessed many times is the people who are on the outside perimeters of a loss sometimes are the ones who do not understand grief. We see someone we care about lose someone they love, a spouse, a child, a sibling, etc and we expect that person to be better after a month or so because for us we have gotten over it, so to say. What we don't realize is the person who lost the loved one is still struggling in silence because no one understands. People can't understand why the grieving person wants to be alone or why they have changed, instead of just allowing the grieving person to just be where they are. Time, it takes time for someone to process a loss and people never get over it, they just learn to live with it. If you are able to think of someone in your life who is very special to you and you were to lose them do you think you could just move on in a month or so? No, you could not. You would have to learn how to live your life without that person there, not an easy task. It is very hard work.We all must learn to respect someones grieving and let them be where they need to be for as long as they need to be there. It seems we have a very hard time doing that for someone so we pull away leaving the person alone and lonely.

Just like everything in life we all grieve differently so on the flip side of grieving sometimes the person grieving never allows anyone to know they are grieving and they may hide away in their own little world and try to deal with their grief in secret. The worst part of this is the person doesn't realize they are not doing themselves or anyone else any good, just making life miserable for themselves and those around them. I think a lot of this way of dealing with grief has to do with the way you were brought up. In past times grief of any sort was almost like a forbidden territory. You had to be strong. You could never let anyone know pain or suffering in any way because it meant you were weak. I see this especially in men who have been taught that only wussies cry. I hate that a man is unable to cry because of something his father, another male figure, or the ideals of the world taught him. We are all human and if we do not cry and admit our weaknesses it will eat us alive until finally we break. We are all given tears for a reason and they are there to use them, no one should ever be ashamed of them. There is a saying that goes something like this: It is much easier to fix a broken child than fix a broken adult. This is so true. I have seen first hand how one person in a family can demolish the self worth of many people in a whole family. When the children grow up they carry bitterness and anger with them wherever they go and blame the whole world for one persons cruelness. It seems unfair and it is even harder to witness the acts of people who were hurt so long ago as they continue to live with that pain. Then when the actual abuser dies and you would think all the hurt would be buried with the person it seems the pain only get worse. Be careful how you treat people, especially if you are a parent of a young child. Childhood wounds cut forever.

I write today so people might understand the grieving process in someone else. The grief of death, in hopes that people can understand there are so many dimensions to grief. I could go on and on. I just hope someone can understand and be there for someone if they are grieving. Do not expect that because someone lost a dear one a month ago, year ago, five years ago, that they should be fine because most of the time they are not. Just love them where they are.

You should also know that I am going to bring chronic illness into this somewhere so here it is. The grief of chronic illness is just as painful and a never ending process. Just when you think you have grieved all your losses you are slapped upside the head over and over again. I think the grieving process of losses in illness pretty much go hand in hand with the loss of losing a loved one. You never truly get over your loses. You may fake and it tell others you are fine and have them convinced you are doing well and then you have another bad day and all the pain comes back. You may act and look like all is fine but deep down you are still dying a little at a time. Oh you are fighting, you are, but it is still there, the pain of the loss or losses, but as in a death you must deal with the grief. You have to find that one person you can let it all go with. The person you can cry to or with, the person who will just sit there and listen and not tell you what to do. The person who cares enough to tell you it is okay to think or tell you it is okay to feel the way you do with all you are facing. I hope if you only get one thing out of this post it is for you to ask yourself, "Am I that person to someone who needs me right now?" Not the person who is uncomfortable, figity, or leaves the room when someone really starts to open up to you, but the person who sits there and just listens. Just shuts up and listens. It isn't that hard. You have to understand when someone trusts you enough to talk to you and you listen it has nothing to do with you. The person talking is learning more and more about themselves by going over their story and this is how we all deal with grief by going over and over the stories of our tragedies. Are you the one someone needs today? Can you really sit there and just listen? You do not need to "fix" anything for anyone, just be there, that's all.

God Bless!


Tuesday, August 14, 2012

The "New" Plan

If you have been following my blog the past week you will know I am trying to cut down on my bedtime dose of Xanax for sleep. It is a very, very low dose but trying to cut it out of my daily meds routine has been a total nightmare. The first night I didn't take it I was sent back into a really bad place, a place I had forgotten about for a few months prior. It is funny how you cannot remember feeling really ill or having a flare when you are doing well, but when it comes back you remember all too well the instant it decides to rear its ugly head. You have to be strong in order to deal with not only the physical symptoms, but the mind games it can play on you at the same time. It is all a fight but you can believe me, in the end I WILL win! I will never give the illness the upper hand. I will fight with all I have to kill this monster before I allow it to take over my mind!

After a week of trying to figure all of this out I finally called my doctor yesterday. She suggested I go back on the regular dose I was on until after the wedding and hopefully by the time the wedding is here I will be feeling good enough to able enjoy the day. The only problem with that is when you are sent into a flare, for whatever reason, you don't just get better in a day. Just because I started to feel sick the day after stopping the med does not mean I will feel great the day after I restart it. It is hard to explain this because in the real world this approach probably does work for someone who has no significant medical issues. For the chronically ill it is like you are sent into the flare one minute and you are swimming to get out of it for many days after it starts, no matter what you do. One little change may take days of recovery, if that is what you want to call it even though t isn't really a recovery at all, but you know what I mean if you deal with chronic illness. The illness has the power and it isn't like a cold where you will be better in a few days, chronic illness may go on for days, weeks, and sometimes months just from on little tiny change.

Last night I did take my full dose of Xanax and I slept wonderfully. I do feel better today but I am still weak and feel very tired. I can tell I have inflammation because my neck hurts, I am stiff and sore, a clear sign of my inflammation kicking in. But, I am better than yesterday so I am very thankful for that. I have eleven days to get it back together so I am good for the wedding, after that I don't care. I just hope and pray that by the wedding day I am able to enjoy it and be there in full with a mind that only has to concentrate on the wedding. If I am in a bad place physically it will affect everything, my ability to concentrate, my ability to socialize with our guests, my ability to see straight, my ability to just think and on and on. If I am physically ill my brain will be working hard trying to keep my body going so that will take away from what I am able to do. It is exhausting to say the least. So for the next eleven days I will take it easy and lay low, hoping and praying the body heals itself to a place where I am doing good. If not, then I will just deal with what I am given and press on. What other choice is there?

God Bless!


Saturday, August 11, 2012

Am I Really Addicted?

A few years back in 2009 I had to have cervical spine surgery to fuse two disc's  together that were eaten away by disease or whatever decided to attack them and eat them to the bone. Over the years I had such horrible pain in my neck on some days it would actually make me cry out from the pain. It was horrific at times and when it got the point where the pain was so bad it was affecting my daily life I know it was time to seek out a neuro surgeon. I found one and brought all my MRI's to the first visit. He walked in the room, took one look at the pictures, and said the two disc's were bone on bone and I would need a fusion in order to help this problem. When we went to the appointment I kind of already knew what he was going to say but when you actually hear it coming out of the doctors mouth it has a different ring to it, more of a reality instead of just a thought in your head.

When we were done with the appointment Rich and I left and talked about this procedure for a few days. Do we do it and take the risks or do I/we continue to live in this vicious pain cycle. We decided it was time to get this problem fixed so I called to set up a time for the surgery. Upon making the appointment there was one problem we knew about, my use of steroids. At that time I was on a higher dose of steroids for all my pain issues and I was told I would need to taper off the steroids in order to have the surgery. Well, if you know anything about steroids you cannot just stop them cold turkey. It took four long months of more pain and a slow taper but I finally got off the steroids, which was brutal to say the least. We were finally able to have the surgery which was set for February 10, 2009. Funny how you can remember dates of things like that.

A few weeks before the surgery I became very anxious, knowing what they were going to do to my spine, and knowing the risks associated with the surgery. When I went for my pre-op appointment I told my doc I was very anxious and she suggested I go on  Xanax to calm me down, so I did, thinking nothing about it. I would take them at night because that is when I was the most anxious. I would lay in bed and think the worst so the Xanax helped me to relax and get the sleep I needed.

February 9 came and the surgery was done. I knew it was going to be bad but I never expected it to be as bad as it was. The pain I had afterward was just a horrible if not worse then the pain before. I remember crying to Rich and wondering if this was a mistake. He assured me it would get better over time. After a long, very long, recovery I started to feel better. I had many PT sessions and other therapies done to my cervical spine to help me get the muscles back into working order. It took a good two years to get myself to a good place. I am now happy I had the surgery and things are going well with my neck. I still have some issues but I am able to live with them if I apply heat or creams for the tightness.

The one problem is I was never able to stop the Xanax over the past three and a half years. As time went on I continued to take the Xanax at bed to help me sleep. Sleep for the chronically ill is vital and I never knew what harm I was doing to myself. Now I have a new PCP and she wants me to stop Xanax and try a new drug, which is fine. The one problem is, she never told me to wean off the Xanax and when I stopped cold turkey and started the new med I had a terrible reaction. If this is what an addict goes through with detox then I have much more sympathy for someone who is trying to get off drugs. It is not fun at all. I am sure their detox is much, much worse than any I feel.

I had a very rough couple of days stopping the Xanax cold turkey and last night I went back on it. I feel much better. I have learned a big lesson in all of this. Do your research before stopping a drug. This just proves what I always preach- you have to be your own doctor. Do the homework before changing anything in your daily medical regimen/therapy. You must do what is right for you not what someone else tells you even if that someone is a medical professional. It is your health, you know what you feel like, you know what you can handle. I will begin the slow process of weaning off the Xanax and go from there, but not without learning some valuable lessons along the way.

God Bless!


Friday, August 10, 2012

I Knew It But Did It Anyway

When I left the doctors office with a new script the other day I had an uneasy feeling about it right from the get to. It was like I was hit upside the head with this medication change and it came out of no where. I had no time to think or do any research on the new drug and for me any change, even a little one, can have big consequences.

My new doc does not like me on Xanax at night for sleep so when I went to the doc Monday to have my foot checked and asked for a refill I was told we do not do that in this office. This is fine, really, but what will I do now to fall asleep? New doc said to try Traxodone at a very low dose it is an antidepressant used for sleep in very low doses. I thought to myself, as I was blindsided, this will either be good or bad. I talked to my Rheumatologist about it and she was good with the change too, although concerned about stopping the Xanax cold turkey after being on it over three years. The past two nights I did not take any Xanax, only the Trazodone. Well, let me tell you, this was no good. It surely is not for me. Within an hour of taking it the first night I got a headache and my heart raced all night long. I didn't sleep well at all. Then I took it again last night thinking maybe the first night was just a fluke, wrong. Last night was even worse than the first night. I did not sleep a wink. I was hyper when I went to bed, had a headache, heart racing and I knew it was going to be a long night. Today I feel like I was out all night partying and I have a hangover. I am shaky and just do not feel well at all. We mustn't forget sleep is extremely important to people with chronic illness.If I do not get ten hours a night I suffer.

When I finally got up this morning at five am I started to think about this more. I did a little more research to find some people cannot take this drug because of what I described above. When Rich left for work at eight this morning I tried to lay back down to at least get a little rest. I laid there for an hour not being able to go to sleep and I am tired. The more I thought about this I have made a decision, one that my Rheumatologist told me to do, as she said, "With you everything has to be done slooowwlllyyy especially when weaning off a drug." She seems to be the only one who understands me and always says I am a difficult case and she never knows what she is going to get, she means it in nicest way, and I totally agree.She is one smart lady let me tell you!

My new decision is to cut back slowly on the Xanax for now. I am going to take my time for now I will alternate one pill and a half of pill every other night. If and when my body tolerates it and adjusts I will cut down to a half a pill every night. When I tolerate that I will cut down more and more, very slowly. It is just like when I cut down on the steroids, go slow. Dr. Key tells me to go very slowly because if I do it like other people I suffer. You would think after living like this for so long I would know the game. I always have to learn it the hard way. I am thankful I always have Dr. Key to put me back in my place she is a God send for me. I am indebted to her for her care and her understanding of my illness.

 Today I will push on. I fell horrible to say the least but I will be just fine. We are watching Addi tonight so I will keep looking forward to our time with her which will keep me focused on the good and not the bad side of all of this. I know in the end this will all turn out fine but I sure do wish I could listen to that voice inside my head that tells me not to make those big changes so fast. I guess it is human nature but when you are ill having to even think about making a med change is stressful, you just want to do it now so it is done and you don't have to concern yourself with it. There are so many components to it. It is not like everyone else who can just stop something and start a new, it is a long brutal process that can be exhausting by the time it is done. In my head I always try to ask myself, "What would Dr. Key say?" along with listening to my inner voice. This time I failed miserably but not today. Today is a new day and I will do what is right for me not what is right for anyone else. I hope my new doc can learn a lesson about me and what I need as far as my care, which is unlike anyone else. It is my body, my choices, my decisions. I know Xanax is a bad drug to take. I totally agree but for me it works for sleep. If this is what I need then this is what I need, although for now I will try to get off it and find a better solution and go from there. I use to take benedryl liquid for sleep and I may try that once I am weaned off the Xanax but for now it is going to be a long, slow ride of Xanax detox and I know in the end it will all get figured out somehow. Ah, the joys of illness.

God Bless!


Thursday, August 9, 2012

Do You Really Understand Chronic Illness?

I just went for a walk around the house. I made it a little over 1/2 mile, which for me is like a "normal healthy" person walking 2 miles. I can't explain it but I sure wish I could. I made it to about round number 4 and I could feel myself slowing down like a car when it runs out of gas. You are flying along the road at a steady speed and all the sudden you start to slowly come to a stop as the car glides to the side of the road, it is no different with chronic illness when you do to much. I was so proud of myself as I made round 6 that I thought to myself I really CAN do this. It is discipline,  but I know the benefits will outweigh the exhaustion I am feeling right now. It will be worth it, it will be worth it, I keep saying this over and over especially since this illness thing can eat you alive if you let it. I will continue to repeat positive thoughts even on the days I am unable to do as much as other days! This is one promise I have made to myself, always in all circumstances look at the positive side. So, I only walked a half mile but it is a half mile more than yesterday. So, I didn't clean my house today but there is always tomorrow. Thoughts like this keep me going. I have to think this way or this illness could eat me alive.

While I walked I thought of a lot of things. How I continue to deal with all of this and wondering how and why one thing after another can keep happening to the same person. It still, after all these years, makes no sense to me at all. This lead me to think of how others could never possibly understand it either, as I can't understand it myself. Of course this lead me to more thinking. The thinking of those who do not understand. The cruelty of some people and how insensitive they can be to people who suffer with chronic illness. How even some of your closest friends now look at you as your disease instead of the person you use to be. Don't get me wrong, I can understand why, I really can, but I wonder what I would do if the tables were turned and it was a friend and not me suffering. I would hope I would have more compassion for them and understanding. I wonder if I write that only because I have suffered? If I never suffered would I have the compassion and empathy I have now. I think I would. I believe I would.

I thought about how so many different things come into play with someone who is chronically ill and outside relationships.. All the things no one thinks about. How some of us can get so mad at people who say stupid things to us. How we lose friendships because of the insensitivity of our friends. The world needs to understand that when you are ill your whole world shrinks. I don't think people can really comprehend this. You have less to do, maybe you can't work anymore, maybe you are stuck in the house more, maybe people/friends forget you more and stop inviting you out because you said, "no" so many other times. This is the stuff that is hard on us. Our world use to be huge like yours and now it is tiny. Think of a time you had the flu or a cold and how you couldn't do much, now imagine that everyday for the rest of your life. Can you?

All we want is for people to care even if they cannot understand. Care and understand that we are not rejecting you we are living with a monster that consumes our life. We, even if it has been years, are still trying to figure it all out, knowing we never will. All we need is love just like everyone else, but in a different way. We are still the same person we are just a little more complex than we use to be. We are just like you in so many ways. Understand we do not want to talk about how we are doing when we see you, but it is nice when someone asks and really does care to hear the details and our daily struggles. Believe me we can tell by the look on your face and reading your body language if you really do want to listen. I am an expert at this type of language. It is no wonder some of us pull away from the real world. The pity in the eyes of other people. The feeling of being totally alone when you are in a large group because you cannot connect to the big world the group lives in. The best one is when you are left alone with someone and they are so uncomfortable they make up excuses to leave you. This one I cannot figure out but it really does happen. Another reason the chronically ill stay home, it makes it easier on everyone else. Sad but true.

Life goes on for all of us, ill or not. We all do the best we can with what we are given. In the end it is just that the chronically ill need a little more understanding and love than most people. That's all.

God Bless!


Monday, August 6, 2012

More Stressin

I went back to the doc today for my foot. It seems somewhat better after wearing the boot for two weeks. I can retire the boot but I cannot burn it, doc says keep it because it is good for either right or left foot. Ughhh I hate the idea of adding another device to my already large collection but I always do what I am told so in the closet the boot goes. No doubt I will hide it under some sheets so I do not have to see it every time I open the closet for a towel. It is funny when you are ill how you can look at something and it can bring back a memory of pain or suffering almost like you are back in that time, for now out of sight out of mind works with the boot. The best part is I can go from a fashionable boot to my fashionable stretchy pants hopefully in a few days. Hey, nothing but class over this way in our neck of the woods. I still need to go back to the foot doctor to see what he thinks as far as this ongoing pain, but for now I am free of the boot and very happy about that.

While I was at my appointment I brought along some of the refills I needed to get new scripts for thinking to myself it will be one less thing to have to do in the near future. I am going to the doc so why not take advantage of it, right? Wrong! I did get my refills but when it came to the last one, Xanax, my new doc said we do not give out scripts for Xanax unless it is for anxiety attacks. I do not suffer from panic attacks and I use this drug to get me to sleep. I have a terrible time falling asleep. Once I am there I am okay but it is getting my mind to shut off and calm down. My new doc wants me to try a new drug called Trazadone at a very low dose it is suppose to be very good for sleep, also helps with migraines. I felt like I was in a whirl wind as she was telling me about it. You see when I go to the doc I usually have a pretty good idea how the appointment is going to go but this one caught me off guard. I sat there agreeing with all she said, asked questions as she wrote the trial script and I was out the door. I went to Walgreens, picked up the meds and came home.

When I got home I started to think about this more. I talked with her about interactions with all the other drugs I am on and she said this one will be the same as Xanax when it comes to interactions. I AM A WRECK! My mind is filled with more questions and racing out of control. I don't think doctors or people realize what a huge stressor it is for a chronically ill person to change even one drug. It is a huge deal not knowing how I will react, if it will it do what I need it to, how it will affect me? I am not willing to deal with even more side effects than I already do. It is down right scary for me and stresses me out like crazy. I am going to talk to my Rheumatologist this week when I go about this switch. If she is good with it then I will give it a try and go from there.

For tonight and tomorrow night I will do the same thing I have done for the past three years and who knows maybe Wednesday night I will try the new med. I am going to try NOT to stress myself out over this change, but it sure is hard not to. I have been doing fabulous the past few months and one change can send me into a tail spin of hell. I sure hope this change does not do that for me. So, we all push on, all of us with whatever it is we have to deal with. We all have and know what works for us when we live with chronic illness. We may have a flare and it may make no sense at all. We may not be able to figure out what causes our flares at times, but sometimes we are able to pinpoint what has caused them to a tee. I hope this new drug will not be one of those drugs I take that I regret. Push on my friends and do the best you can! What more can we do?

God Bless!


Sunday, August 5, 2012

Finally - On The Right Track?

I think I am finally there. In the place I am suppose to be at this time. I may have finally found the right combination of drugs for me. Oh don't get me wrong I have been here before, it is just that every time I get here and I feel like a somewhat "normal" human being I start to think I am God and try to cut back on dosages of certain meds thinking I will be okay, only to fall back into a pit of hell, as I call it.

Here I am once again in a good place. The methotrexate has finally built itself back up in my system since I was able to find the injectable form. The medro/steroid is at a level that is just about perfect for me. Yes, there are days I still get inflammation and could take more, but I push through those days and try other therapies to get the inflammation down. Increasing the medro helps but it sure is murder and makes me crazy. I am already pretty outspoken and the higher doses of this drug can make me down right mean, so I stay on my 6mg dose and do the best I can with that. It is just when I feel somewhat "human" as I do now I think hummm I can cut back on the steroids and get off them. This always turns out to be a huge mistake and backfires big time. I am also taking a new pain meds twice a day called tramadol. I don't know what is in it but it has changed my life. I have energy, less pain, and am doing so much better since I started it. I hate the thought of another drug but when you are ill you will do anything to try to feel better, if that means another med then so be it. The worst part of this drug is my memory is just horrible on it, almost scary when I think of how it has affected my memory but there is always a trade off when taking any drug.
At night I take a muscle relaxer for my neck pain and a xanax to help me sleep. You see when you are in pain sleep is one of the biggest luxuries that suffer, and a ill person without sleep just gets more pain. It is all a vicious cycle.

You can see being ill, taking drugs, doing all the little things to help yourself feel okay to get through the day can all be a full time job. It is relentless agony. Should I do this, should I do that? When I feel good like I am now I still have to be very careful, one slip up can send me back into the hell. One good sign for me is that I am good today. We moved Richie and Leah yesterday and I helped unpack, normally I would not be able to do anything the day after working like that, but today I feel good. It is almost scary to think about so I push it out of my head. It is hard living in fear wondering if tomorrow the hell will return. I try to push the bad thoughts of the hell returning out as fast as they come in and just enjoy the good.

My point is, when you find what works for you, you must keep doing what you are doing. Do not think you can stop a med or cut back. Do not think you can be wonder woman or superman just because things are good. Push on do the best you can but don't over do it. Take the good and do good. In starting this post I listed a few of the drugs I take. Those are only a few, there are a few more, but I feel these are the ones that really help me to have a better quality of life. I feel blessed we are able to find these drugs and we have insurance to help us cover some of the expense because without them my life would be much more difficult. I am thankful to have drugs that allow me to enjoy my family and give a little bit of love to others when I am able. I wish I were able to give more but there is a limit when you are ill. I struggle with this the most, but I try my best to show others love in a world that seems to be changing into a place that I don't like. Sad to write for me, but even sadder to witness. I wish I were able to be out there more to show more goodness to the world. This is very painful for me too but I have to believe the little that I can do, do is making a difference in this world.

Here we are again at then end of my babbling. My hopes and wishes for you are that you are able to push on. I hope if you are on drugs for illness you are able or have found what works for you. I hope you do not have the struggle, as I do, of thinking, I am doing good so I will cut this drug out, it is a bad, bad idea. I have done it so many times and I think I have finally learned my lesson. This is what works for me so don't mess with it, I'm not going to anymore. I hope if you struggle you are able to get here too. It is never easy thinking to yourself, I have to do this for the rest of my life? But it is worth it if you are able to enjoy all the beauty that surrounds you in people and in life and you at least feel okay to do so!

God Bless!


Friday, August 3, 2012

Here's To Us!

I can't believe it has been a week or so since I have written anything on my blog. It seems I always have something to write about but for some reason I haven't had the time to think about writing as I go off to work each day. It is a huge adjustment for me to have to get out of bed, get ready, drive to work, work, and then drive home. Yes, to most people who work these little things are nothing, but for me it is the whole day. By the time I get home from working around 2:00 pm I am done for the day. I must learn how to balance this all out. I don't know how. I haven't cleaned up the house since I started. Dinner has been burgers and veggies or fish and veggies, or whatever I see when I open the freezer. My energy is depleted but my mind is being kept busy so I don't have time to think about what my body is doing to me.

My foot continues to give me issues even as I wear this stupid ugly boot. I go back to the doc Monday and I am hoping I can burn this stupid thing. I figure if I am in pain with the boot on what is the reason to wear it? I will say between working and this foot pain the energy is sucked out of me even faster than it is on my usual stay at home days. Then there is the other worries because my lower back and hip are giving me issues because the boot and the tennis shoe I am wearing on my right foot are not the same height. So what is a person suppose to do? Boot, more pain. No boot, more pain. It seems, at least for me, I never have win/win when it comes to my health issues. If I am feeling strong and my muscles are working well then the pain is acting up. If the pain is at a minimal then the weakness is acting up. I don't understand it at all, but I do understand it helps to make me a stronger person in so many other ways.

I just posted a saying on my facebook wall that hit me right in the heart it says:
"Someone asked me how I hold my head up so high after all I have been through. I said, its because no matter what I am a survivor. Not a victim."
I absolutely love this! How true. If you spend your time sitting around feeling sorry for yourself because of this or that,what is the point of living? I believe that life is good. People are good. We all should try to do good and we should not sit around feeling sorry for ourselves because of what life has thrown our way. We must pick ourselves up and do the best we can with what we have. Yes, there are days it isn't that easy. Yes, there are days we all wonder what the heck all this suffering is about. Yes, there are times we want to throw in the towel, I'm not denying that. We are all human. I am just saying if we allow that negative energy into our lives it will drag us down fast and sometimes it can be very hard to pull ourselves out of that black hole of hell. I know because I have been there many times. When this happens I try, as hard as I can, to do something that feels good to me and is good for me. I have my list in my head of things that I know bring me back up. I won't list them all but I sure hope you are able to have a list in your head too. One of my favorites is to take a hot bath and use all the yummy smelling stuff I have. After I am done I am clean, I feel better from the heat, and I smell delicious. The best part is it drives Rich crazy so then I get more good stuff. If you understand what I am writing and you try your own special touches then you too can be pulled from the drudgery of illness or life. It isn't easy but it is doable. Everything is doable!

Here's to us!

God Bless!