Monday, January 28, 2013

Blast Me Blepheritis

This past week has been a good week. I got to spend a few good days with Lola before she got sick again and they were really fun and full of love and kisses. I miss her so much but things happen and you have to deal with them. Like I always say, life goes on not matter what happens. People die, pets die, you must learn to live on and move forward. I know Lola would want us to be happy so just keep thinking of that and her last sweet kisses she gave to me. Depending on the situation at hand it is easier to move on at certain time than others but we must keep a positive outlook as much as posible.

My health over the past six weeks or so has been okay. I have had to decrease one of my meds because of the side effects and each week I feel myself going down hill more and more. I can always tell when I am not doing well because it is really hard for me to pull myself out of bed and I just want to lay there and not move. I more or less have to force myself to get up. I change my frame of mind as I lay there and think of something I could do to feed my soul. I think of my art room, humm, what could I make today. I think of the laundry because Rich does need clean clothes for work. In some odd way even doing housework gives me self worth. You see when you don't work, or you are ill, your world is small and even something as simple as emptying the dishwasher is a feat in itself. I know it sounds crazy but it is true.

I am not sure if the stress of Lola being sick and taking care of her for almost a month or cutting back on the meds, or the stress of all of this happening at one time has affected my immune system even more, I have had a rough few weeks. I have had two health issues hit at the same time. One I will not talk about the other I will because it may affect others. I have had problems with very dry eyes for many years. I know have Blepheritis. It is very annoying to say the least and a number of problems come along with both issues. Dryness, itchy, burning, swollen, red, gritty feeling, light sensitivity, and crusties upon waking. I use Restasis for my dry eyes but it does not help with Blepheritis. With this your eye lids and the area around your eye become inflamed. It can go hand in hand with autoimmunes diseases since they also cause inflammation. of course I would be one the lucky who have to deal with this too. I have to use hot wash cloths and keep my eyes clean with baby shampoo. I am trying not to wear makeup and keeping them as clean as I can, as I said it is more of a nuisance than anything else.There really is no other treatments unless there is an infection and I am sure I do not have that. I am anxious to see what my Rheumatologist has to say about this. My Neurologist is the one who mentioned this the last time I was there to see him. It seems to get worse then clear up and then get worse and clear up, on and on. All I have read on Mayo and Web MD says that it more than likely will never go away you just have to try to keep it under control. I know with all the inflammation I experience that can be hard to do but I will try the best I can to keep it under control.

The story continues. It never ends to tell you the truth. Every night when I go to bed I think to myself about what tomorrow will bring, I never know. I pray for strength to get me through whatever it might, or if I am fortunate what it might not be. Those are the best days when I wake up and nothing new decides to rear its ugly head. It is hard to live like this but it is the reason you must live one day and one minute at a time, feeding goodness into your head and continuing to move forward the best you can and the best you know how. There are the days you are flying blind but you keep flying. Spreading your wings and allowing them to take you somewhere that brings joy to your heart. What else can we do? The alternative is not an option, at least on most days. Hang on and enjoy the ride my friends!

God Bless!


Friday, January 25, 2013

Bone Cold-Literally

The winter here in Michigan has been very mild and enjoyable this year. We haven't had much snow and the temperatures have made it very nice to go out in a light jacket certain days and a winter coat on others. I like these winters because the driving is easy when you don't get much snow so a quick run to the store is fairly easy except for all the crappy drivers out there. This week it all changed. Our weather pattern changed quite quickly going from mild to brutally cold with lots of beautiful snow. Yesterday morning Rich said it was five degrees when we got up and an hour later he said it was down to one degree. He told me something I never knew, that the temp always drops just before the sun comes up. Who knew? I guess working in the nursery business all these years and weather being such a huge part of his job he knows it all.

I had to watch the kids yesterday and it sure was bitterly cold out. I had to take Addi with me to go pick up Hunter from school. I knew it would be like running a marathon for me but what are you going to do when your daughter has a meeting she can't miss. Plus the fact that I love spending a few hours with the kids alone. I got Addi all ready to go get Hunter from school then I got myself ready and we headed outside. Luckily the car was still warm so we were golden there. We got to school walked in, picked up Hunter, who by the way told me he had a wet fart so we had to go home, we went outside to leave. Hunter decided to climb the snow pile in the parking lot so Addi and I stood there to watch. I knew it was cold but never realized how cold and I forgot what the cold does to me. We piled in the car after Hunter slid down the hill and headed back to their house where we found out Hunter's wet fart wasn't really a wet fart after all. Haha we had a great laugh over that one. Of course Papa loved that one and had to call him last night to laugh about it. I could hear Hunter laughing so loud when Rich asked him about it. I love kids! So honest no matter the subject.

I played with the kids after they ate lunch and by that time I was wore out. It is hard work taking care of those little ones, you forget when your kids are grown and gone. I felt stiff and very tired. We played some games and Katie came home. I left and came home to my quiet house. I felt off but didn't know why. I am slow when it comes to figuring things out with my illness. I nver put it all together for some reason probably because it has been my life for so long and it is just the way it is, one thing after another, you never know from day to day. Rich came home from work, we ate, and I went to take a bath. By this time my neck was stiff I was exhausted and cold. I was so cold I couldn't get warm. The kind of cold that, for me, feels like my bones are ice. After my hot, very hot bath, I sat on the couch and as I sat there I thought to myself I am still bone cold. It had been a half hour and I thought to myself of past winters. The bone cold thoughts came back with a vengeance. Since this winter has been so mild I forgot about this icy bone cold symptom I experience in the winter. So you guessed it I got up and a half hour later I was soaking in a hot bath again. I know it sounds crazy but it is the truth. It is the worst cold you can experience. After each bath I was hot, my skin was red, but my bones were ice cold. This morning I woke up with the other part that follows the bone cold. Pain. My neck is very stiff since that is where I experience the worst bone chill. I wonder if it is from the six inches of metal that are implanted in my cervical spine but if I recall I had this before the surgery, for years as a matter of fact. I have a headache which I am blaming on either the cold and the neck pain or I am wondering if it is sinus problems. This is what you do with every symptom when you are ill everyday. Is it from this or that or what?

The conclusion? It never ends. Just when I am doing pretty good it seems it all can change so fast. Oh well we all have it. The good days we enjoy and when the harder days hit we get through them knowing they will pass. I know this will. I feel a little warmer today. The cold bone feeling is still there but it isn't as intense as last night. I just soaked in the hot bath once again hoping it penetrates deep to the bone. It won't but I keep telling myself it will and then like magic the cold will disappear and it will all be good again. I wait patiently. Well, at least until I am exposed to more cold anyways. I suppose I could wrap a scarf around my neck too but truthfully that doesn't help either. Maybe a thermacare will be on the list for today. I don't know. I hate to have to use those things during the day it is like the illness wins when I give into wearing one of those for pain. I hate to give in and let the pain win. Stubborn? Yes! I am mad as hell at this illness thing and I fight it every minute of everyday. I yell at it. I try to ignore it even when the pain is really intense but it is hard on days like this. It will not win! It will not win! Now I go. Go to put on a few more layers of shirts to hopefully warm the bones to some sort of a livable stage.

God Bless!


Monday, January 21, 2013

Making Life A Little Easier For Yourself

I was going through my list of songs I have written down in a binder and a few pieces of paper fell out. I have no idea where I got them but I thought I would share them with you . They are ideas on how to make life a little easier when you are living with chronic illness. I figured them falling into my lap today was a sign that I should share the information with you.

First and foremost when living with a chronic illness it isn't easy trying to manage the extreme fatigue that attaches itself to illness. This is not the normal fatigue most people experience but much much more intense. So intense it is hard to explain but if you have it, you know what I am talking about.
Controlling fatigue:
1. Pace your activities for the day.
2. Take frequent rests.
3. Try to get a good nights sleep. Yes, this is hard for people in pain but it is possible. Talk to your doctor.
4. Eat a well balanced diet.
5. Minimize stress. This can be tough at times.
6. Remain physically active. Even when you don't feel like it, do it!
Yes, there are those days your fatigue can be so extreme you are unable to do much at all but you must at least try to do a few things and not let the fatigue win.

Plan your day:
1. Pace yourself.
2. Know your limits.
3. Avoid overdoing and then crashing.
4. Exercise should not cause more fatigue and if it does then cut back a little. Figure out your time limit and what you can do even if it is five minutes it is five minutes more than yesterday.
5. Build in rest.
6. Remember to build in rest so you can do your evening activities. Go easy in the morning.
7. Have something to look forward to each and everyday. 

Energy Conservation:
1. What's the most important activity for today? What can't wait? What else would you like to do today? Remember what you do early in the day will affect you later in the day so if you are going out at night keep that in the back of your mind in the morning and early afternoon and plan your activities accordingly so you are not to wore out for the dinner plans.
2. Listen to your body. Know when to push yourself and know when to stop.
3. Learn what works for YOU! You are not the same as someone else so do what YOU can do. Never ever try to keep up with someone else!
4. Learn how you can recover. When you do overdo it what do you have to do to recover?
5. Journal your meds and your activities. It is easy to think you will remember when you took your meds or when you did to much but it is easy to forget when you get busy with something. Stay on schedule. Don't miss meds and limit activities. Find a schedule works for you.
6. Put yourself first. Me time. For some reason we think we are not suppose to do this in our society but when you are ill it is a must. It isn't selfish it is self care. You are no good to anyone else unless you are good to yourself.

Energy Conservation at Home:
1. Sit during chores.
2. Delegate to family members.
3. Keep objects you use at appropriate heights and readily available. Who cares if you have things out and it looks a little cluttered it saves the energy you would use to looking for it.
4. Schedule rest periods.
5. Plan activities. Break the activity into parts. Prepare everything ahead.
6. Clean your house in stages. Monday bathroom. Tuesday dust. Wednesday change bedding. etc. You don't have to do it all in one day.

Energy Conservation in Grooming:
1. Sit on a stool to brush teeth, etc.
2. Prop up your elbows if needed.
3. Use an electric toothbrush.
4. Rest in between.
5. Have a easy hairstyle.
6. Take a shorter shower or bath. Make sure the water isn't too hot to cause weakness.
7. Sit down to get dressed.
8. Wear easy cloths that aren't to tight that move with your body for more comfort.

Energy Conservation in the Community:
1. Park close. Get and use a handicap sticker if need be.
2. Avoid peak busy times.
3. Wear supportive shoes.
4. Stay balanced. If that means you need a cane then use it.
5. Use a cart.
6. Plan according to meds.
7. Shop by mail.
8. Small sizes weigh less.
9. Ask for help in the places you are doing business.
10. When you get home unload perishables and leave the rest in the car until you either have the energy to do the rest or someone is home to help you.
11. Ask someone to go with you to help you or if need be call someone to pick up a few things for you ifyou are unable to get out. Most people would be happy to help you if you would just ask.

Energy Conservation at Work:
1. Use proper neck and back support.
2. Sit, don't stand.
3. Avoid eye strain.
4. Take breaks.
5. Use proper air conditioning/heat depending on the time of the year.
6. Check into the Family Medical Leave Act if need be.
7. Take pillows to prop around you or to sit on.

I am sure we all could add many things to this list. Ways we all incorporate into our lives to make life easier for us. What makes like easier for me may not make life easier for you. Just like our disease we are all different. We all must adapt to our limitations. We all must learn to control our disease and live as comfortably as possible. With that being said I am off to take a nice hot shower and loosen up my muscles so I can go do some yoga.

God Bless!


Saturday, January 19, 2013

The Answer

Yesterday the Arthritis Today Magazine site asked this question:   
Happy Friday to our arthritis community! Share a story about how arthritis has impacted your life. 

I didn't have to think about it for too long to answer. My answer:
Arthritis has helped me realize all that is good and to ignore the negative that can weigh me down and for that I am thankful for my arthritis!

After I wrote my answer I read some of the ones that were entered before mine. Many of them talked about the negative that arthritis has caused in their lives. The more I read the sadder I became. It breaks my heart that people can only think of the negative things that illness has brought into their lives instead of the positive. That being said I just read the responses that were written after I wrote mine and they seemed much more positive than the ones before I wrote mine. I find this interesting. I believe in this world we are all followers in some odd way. We seem to go with the crowd or go with the flow. If someone tells us one thing and we think another way we tend to agree so we don't have to stand up for what we believe in. I don't believe this is right. We all should be honest in what we live or what we believe in no matter what it is, arthritis, a political stance, or whatever it may be. I just found it odd that all of the sudden the responses were a little more positive but odd in a good way. It seems we need people to remind us of the good we have instead of always looking at the bad. It seems the world has such a negative attitude on everything these days. Ob believe me I have those days too. The ones where I hate everything and wonder what the heck this is all about. But when I do I can usually find some good that is mixed in with that negativity, at least I try we are all a work in progress.

To be honest if I had to write a paragraph about how arthritis has impacted my life I could go on and on. It has made my marriage even stronger than it has ever been. To know someone would go to the ends of the earth for me is heartwarming. It has made me realize the relationships with people in my life are either based on what I could do for them or not. It is all good. It has brought out my creative self. Yes, it has always been there but now I have more time to do the things I love to do. It has made me not really care if I have a little dust or if the all the laundry isn't done the day it hits the basket. It has made me lighten up, a little bit, on the idea that I have to have a four course meal for Rich when he gets home from work. He could care less if we have a burger for dinner vs a chicken dinner. It has made me appreciate the little things like a kiss from my grandbabies or holding a door open for someone or helping someone in need when I am out in public. Only because I know what it is like to be one of those people who may need the help at certain times. It has helped me to not judge people. I don't think I really ever did this but there probably were times I did, especially now that I am the one with a handicap sticker and people are probably looking at me with that look that says she doesn't look handicapped to me. I don't think of myself as handicapped but there are those days if I do too much I sure do pay the price. The price has made me appreciate and live every moment the best I know how. I have had a great life and am blessed beyond measure. So when they asked how has arthritis impacted your life of course all I could think of was the good and how blessed I truly am.

I hope whether you have arthritis or not that you can find the good in your life. The positive things that are the things that keep you going and keep you living. Life is short and all the little things that you do to feed your soul are the things you will leave behind to the ones you love. Every time I write a blog, paint a picture, write, or decorate my home I think of it all as the part of me I am leaving to the ones I love. When I am gone they will have much to remember me by. What more could I do but enjoy every little moment given to me? I hope you are able to do the same!

God Bless!


Thursday, January 17, 2013

Weigh-ty Issues

Just when I think life has settled down a bit all hell breaks loose. I made it thorough Christmas. I have been very careful with germs and staying home so I don't get sick. Yes, for the normal world it is no big deal, all those little things that have to get done. But for me when all the little things hit or one big thing hits it is exhausting and can send me into autoimmune hell.

Our dog has been seriously ill with pancreatitis since Christmas. She was in the hospital for three days after Christmas and we thought she was better and then she had a relapse and became even sicker than the first time. I had to take her to Michigan State and after a long day and many tests they found her pancreatitis was still there and very severe. They wanted to keep her there but I had an uneasy feeling as far as leaving her there so I called her doctor at Allendale Animal Hospital and asked if they would be willing to take her back once again. The doctor was happy to take her back so I took her home with me all drugged up and she slept until the next morning when I brought her back to Allendale Hospital. I was uneasy about leaving her at State since it is a teaching hospital I figured they would have all the students poking and proding her. She has had a rough enough life with all the abuse she endured in early life I didn't dare leave her. Allendale Animal Hospital took very good care of her for four more days and she is home now. Having her ill brought back that sick feeling that you get when one of your children are sick. The worry is so tiring. It weights on you and wears you out. I know this is not good for my health but it is one of those, "What are you gonna do?" things that you just have to push your way through. Many times I am able to control how much I do and where I spend my energy, the little I energy I have, but when it is an urgent weigh-ty issue and you have no choice and you do what you have to do and pay later. We are both resting comfortably today after three weeks of uncertainty.

I am sure when you read the title of this entry you thought it was going to be about weight so I wouldn't want to disappoint you. A totally separate issues than the dog saga. As soon as I weaned off the Xanax I gained instant weight. I have no idea why but in one weeks time I put on fifteen pounds, no kidding. I didn't eat differently than usual but gained. Yes, I did indulged a little more on sweets over the Holidays but surely not enough to gain that much weight. It is so annoying to constantly have your weight be such a weigh-ty issue. It gets really annoying when you don't eat like the normal world but still have issues with weight. I don't do drive thru's. I don't drink pop. I try to stay away from sweets except for the occasional treat. I try to cook healthy during the week the best I can. I stay away from carbs although this can be my weakness. I just don't get it. It gets so frustrating and my weight has been a weigh-ty issue for me my whole life. I am happy to say I have lost four of those extra pounds and I attribute it to the protein shakes I started drinking every morning for breakfast. I do believe this helps me because when I was drinking them before I lost or at least maintained my weight. The worst part for me is Rich always tells me how good I look and it makes me not care about my weight as much as I should. I know this is going to continue to be a weigh-ty issue for me for the rest of my life.

The other day my daughter told me I am too nice. It made me think for the past few days. Is it really possible to be too nice? I can't believe it is but then again maybe I am or at least was in my past life of normalcy. A weigh-ty issue for me. When our kids were little I did a lot. involved at school, church, and helped a lot of people on the side. I never said no to anyone. I was brought up by the golden rule so for me it was second nature to help people. Sometimes I wonder if my illness was caused by stress, stresses I brought on myself by not taking such good care of myself when I was younger. I have had certain people take total advantage of me because of my willingness to help others. Funny how I never saw it then but I sure can see it now as I look back. I have learned over the years that I don't always have to say yes or be the one who does it all. It feels really good to finally get here. Did the stress of my younger years force my body to have some sort of immune response that caused me to become ill? I don't know but I do know there is some evidence that stress can and does contribute to autoimmunes and having tramatic events can also contribute. I was taken advantage of horribly by a family member and I allowed it. I was so blind. This is a very weigh-ty issue for me as I can't change the past but have learned to use it to my advantage now. I have grown and learned that I have to take care of myself in order to be any help to someone else. We are all a work in progress.

My list of weigh-ty issues could go on and on but for now I will stop. I am sure as you read this you are thinking of some of your own weigh-ty issues. Whether they are your weight, people, a family member, or friend I hope you can either learn a lesson from them or maybe you have already learned your lesson from them. Embrace your weigh-ty issues but don't allow others to take advantage of you. Be your own person and if that means saying no then by all means say no. Don't worry about what the other person will think of you but worry about what you think of yourself. It is okay, really! I have learned you cannot be any good to anyone else unless you are good to yourself. I hope you can or have learned that too!

God Bless!


Sunday, January 13, 2013

Goal. Plan. Work. Win

This IS possible! 

A year ago if you told me I was going to be doing yoga on a daily basis I would have laughed in your face. I began weekly yoga classes last October never expecting that this was going to be for me. The first month was brutal to say the least. My neck pain was getting out of control and I knew I needed to do something because I sure did not want to have to take more pain meds to cover up the problem. It has been almost three years since my fusion and I was hoping by now there would be some kind of a miracle cure but I was wrong. Don't get me wrong I am much better than I was before surgery but I never expected that this neck issue would be a life long struggle but I am finding out it will be. One of the main reason I signed up for yoga was for this reason. The first month of yoga made the pain even worse but the instructor reassured me it would get better with time. She was right. It has been three months now and along with four PT sessions I am learning how to manage this pain with yoga, stretches, neck exercises. My nights have improved and for the past week or so I have no been awaken by my neck pain. Progress! I hope this continues.

My energy is starting to come back to some degree and I feel better all over. Cured? No. I still have to be careful and not over do it but I feel more awake and able to get more things done for some reason. Good and bad days? Yes. But I can feel some sort of shift happening. Proof that if you stick to something it will help you. Believe me there were weeks I didn't want to go to class and other weeks I wanted to quit but I fought it and I am so glad I did. Last December I had one of those weeks I did not want to go. I was so tired and wore out from doing the few things I did to get ready  for Christmas that it was like brain overload to even think about going to yoga class. I was on my way to class one week and I thought I forgot my mat. I made a deal with my self as I drove in a church parking lot to see if my mat was in the car. My deal was, if my mat is in the car I go, if it isn't I go home. Well, guess what? The mat was in the car. Darn I thought to myself but I made a deal and when I make deals I stick to them so I got back in the car and drove to class. A funny thing happened when I left class. I felt one hundred times better than when I got there. Right then and there I made the decision I was going to get serious about yoga. Since that day I felt a shift. A life change happening. A shift I can't explain but it is good. I feel calmer and more in control. I feel like I can handle this chronic illness the rest of my life because I have something that I can control. You see, the more yoga I do the stronger my muscles become. The stronger my muscles become the less my joints hurt which in turn there is less pain. See the cycle? The good cycle instead of the bad cycle. I like this cycle much more than the pain cycle and sitting on the couch trying to get relief with meds and heat and ice.

My next goal is to get on the treadmill and when it gets warm get outside to start walking outside. I started out with yoga slowly and now am doing it everyday. I plan to do the same with the walking. If I can only do five minutes the first time I am going to tell myself it is five minutes more than yesterday. I know if I stick to it I can increase those numbers and I will keep my mind frame on my success with yoga and tell myself I can do this. As with yoga when I first started I did it once a week in class. Now I am doing 20-30 minutes one day and 10 the next, alternating. Anything is possible if you put your mind to it. It seems my workout schedule is good for me right now but who knows maybe in a month or so I will be doing 20-30 minutes daily. All I know is when you see results like this I cannot quit or I will slide right back in the pain cycle.

In ending this I hope you can see that if I can do it YOU can do it too. Put your mind to it! Believe in yourself, like I did. When you believe anything is possible! We are all a work in progress and all we can do is try. Have a little faith in yourself you never know where it will lead. For me? I am hoping the yoga, walking, eating better might make me feel so much better that I will be able to reach my ultimate goal: A JOB! Stay tuned we shall see what happens.

God Bless! 


Tuesday, January 8, 2013

Planning Your Moments

Wow! Talk about contradicting myself. A few entries ago I wrote about how we should live in the moment. Today I am not only thinking about that but also thinking about how we also need things to look forward to. There are so many things you can look forward to. A trip, a outing with friends, a shopping trip. All things that take a lot of your time but what I am really talking about is the time you take for you. The time you plan that nurtures you.

I thought about this for the past hour or so because I haven't seen my grand babies for five whole days and I am having grandchild withdraw. I am looking forward to seeing them on Thursday afternoon and playing with them for a few hours. I almost hate to say it but since I became less of a social butterfly it is almost like I don't look forward to much anymore. I know what you are thinking, I have to be depressed. No I'm not, fortunately for me, as many chronically ill people do suffer from depression, I am thankful I don't. The reason I don't look so forward to much anymore is the pay off. The payoff no one understands. You could understand why I don't look forward to much if you were able to live in my body the day or two after I do something that over taxes my body and even my mind. You see, chronic illness not only plays havoc on your body but your mind too. Your brain is so busy getting all these messages that you become wore out very fast not only physically but mentally. When I get to a certain point in an evening my brain will actually shut off. I am unable to take in much more information and I know that is when it is time to leave and get home to calm my mind, body, and soul. I will tell you yoga has done wonders for me not only for the mind calming but also for my physical condition. I am making a turn on the right direction by doing yoga and I am grateful I finally took the step and tried it. Doing things for yourself is important. I know now days we are almost made to feel guilty if we take time for ourselves, we shouldn't!

The point of this is to understand even though you must try to live in the moment you must also have things you look forward to. The things that keep your mind and your soul happy. The little things that give you purpose when you are held up in chains by chronic illness or if you live a normal stress filled life. I have many little look forward to things. Seeing my kid and grand kids. Knowing I have many different art projects I can do if the mood hits me. The thought of having a night alone with my husband and turning our phones off and just laying together talking. My yoga class once a week and the yoga I now incorporate in my daily living. These are just a few more things that give me purpose and a reason to continue living as much of a normal life as possible. With that being said even though I look forward to things I still try as hard as I can to live in the moment I am in and savor every minute of it. So in reference to the entry that was about living in the moment I also believe we have to plan some things to keep ourselves going. The two go hand in hand, planning and living in the moment. You must have things you love to do and do them. You must have passions that allow you to live in the moment. I hope you are able to think of a few of yours and plan and live them with zeal.

God Bless!


Monday, January 7, 2013

Sleep, I Guess

Wow I never thought I would write a blog in a t-shirt and no underwear but hey I was way to lazy to go down to the dryer so I figured what the heck I'll go big just this one time. Yup TMI but if you know me or knew me that's me. I have no idea why I am writing as I have been trying to rack my brain thinking of something to write in my blog the past few days. I do know one thing I am sleeping better as I started taking Zoloft a few weeks ago but just when I go to bed. My sleep was all but gone and it was making me absolutely crazy to say the least. It is amazing what sleep deprivation does to a person. Since I started the Zoloft I have been feeling like a zombie the past few weeks but I am hoping that is going to go away and is just a short term side effect.Then I wonder is it trying to make friends with all the other poison circulating in my blood. When my doctor told me it sounded like I had anxiety I didn't believe it. I'm still not so sure I believe it but what the hell, on this pill I already don't give a crap about anything so maybe they are right. I cannot believe I am taking a drug that makes me not give a crap. I feel kind of mean and a little more bitchy on this too so wow good thing I started this new drug to calm me down, hummm. Just don't rub me wrong or you are going to get what you get. I can't guarantee if it will be good or bad. Just sayin. All I know is I am having a harder time getting out of bed in the morning. It feels like I could just lay there with my eyes open and not really care if I move or not. I am wondering if I really want to do this to myself for the rest of my life. I don't like that, not being in control feeling at all. Even being ill a lot I still think I am a very level headed person who likes to research things and find as many facts as I can on certain issues. I would like to stay that way, thank you very much! I still do not believe I have anxiety. On this med I almost feel like I am walking in circles accomplishing nothing, a feeling I never had on Xanax. But I will say, yesterday and today, I have felt a little more alert after waking up and getting my body in motion. It is a sad day when a control freak is on a drug that threatens to take that away. I am in the beginning stages so I will give it a few more weeks and see what happens. I sure do not want to become dependent on, another drug, a drug like this if it is going to take my bullheaded, bossy, controlling demeanor away from me. It would be awful hard to live with myself if I lost that. After all everyone has come to love me the way I am so why would I want to disappoint them with being overly nice, compliant, and not in control? So the sleep saga continues stay tuned for updates.

God Bless!


Friday, January 4, 2013

The Moment

I saw this quote yesterday and I have no idea why I cannot get it out of my head. I think about the moment a lot, this moment, the moment I am in. I wonder how many other people do. Do you? I know my life is much different and I do not have the luxury of living the normal life that most people are able to live. I guess never knowing what the day is going to bring in some odd way forces you to re-evaluate your life. When your health becomes some sort of a full time job you begin to morph into the person God created you to be. It isn't like I never appreciated all I had or the people who surround me but now it is different. I delight in such simple things. A room full of the ones I love, a song, a wild animal, the joy of just knowing Rich will be home from work in a few hours. Things like that. I try not to think to far ahead and making plans, for me, is like a far off thought. We might make plans for the weekend but for me it is almost like I cannot even process the weekend as I am trying to focus and get through today and the now. Plus, I have no idea if that day is going to be a good day or a bad day so plans for me are a far off dream. While most people live for their weekend plans there are times I dread them. I must always stay one step ahead of the game, ahead of the real world, and live in the moment. I have said it before this was very hard for me in the beginning stages of my illness but over the years it has become easier. The past few years I have made even more changes. Changes that are right for me, for my health. I fought it for so long but now it feels good to say no and do what is right for me. The sad part is I just don't care anymore if people get upset with me. They have no idea what I live with so it is all good. I don't care what people think anymore. It sucks up so much energy to worry about everyone else all the time. I don't have time for that anymore as I am trying to live in the moment.

I don't go out in the world much, especially now with all this flu going around, but when I do it is always like some sort of a freak show for me. The few times I did go to the store for a few items for Christmas it amazed me the kindness that surrounded me. Yesterday I went to the store very quickly for a few items, avoiding everyone around me because of the germs, but saw a little different scenario. People didn't seem as kind after Christmas. This is one of the things that drives me bonkers about Christmas. It made me think even more about the moment. The few people that did surround me were in a rush, to busy to be kind, and surely not living in the moment. I wish people could step back and take a look at themselves and see what they look like when they are out there in the world. For me, I live in the world of, "What if this is my last moment? What if this trip to the store is my last and on the way home it ends? Do I want it to end being rude to the strangers I meet?" I know it is a crazy way of thinking but when you are ill and on life threatening drugs you can't help but come to grips with your death. You also cannot help but come to grips with living in the moment.

I hope after you read this you can think about the moments more. I hope you can learn to live in the moment you are in instead of worrying about tonight or tomorrow, Friday, or the weekend. Yes, I know life is full of planning and that is a fact but make your plans and live in the now. How many precious moments pass you by as you are looking forward to that date on your calendar? I am teaching Rich this concept and he is much more aware and is really liking it. He will even say, "I know, live in the moment. I am trying." It is hard to do but as with everything we are all a work in progress, even me. Thanks for sharing a few of your moments with me I truly appreciate it from the bottom of my heart!

God Bless!


Wednesday, January 2, 2013

2013 Resolutions

I am pretty sure if you go back in my blog to this time last year I wrote pretty much the same thing I am going to write now. I'm funny like that I usually don't change my thoughts or ways and stick to the same ways of thinking year after year as many of us do. All the New Years Resolutions to lose weight, eat healthier, stress less, are upon us once again. The reason I write this is to write I am not into resolutions for the New Year, never have been and probably never will be. Yes, I make the same vows as all of you but my vows/resolutions are pretty much based on a daily basis, and I am sure many of my vows to myself look very different than those of the healthy world.

I write this because, for me, my life is a resolution everyday single of the year. My vow to myself to get out of bed and make the best of each day no matter how my body decides to attack me. It is funny because I have been thinking about writing this blog entry for the past twenty-four hours and I put it off until this morning knowing when I went to bed last night this is what I was going to be doing this morning if I were given another day, writing this. When I woke up this morning I was slammed once again with neck pain and a slight migraine that I am trying to ignore, if that is possible.  My vision is blurry and distorted and making it very hard to focus on anything without it swaying all over the place. But here I am, keeping my daily resolution NOT to let anything stop me from pushing on. Yes, it is a huge struggle on some days to fight it. It is really hard on some days, days like this, not to crawl back in bed and lay there until the middle of the afternoon but if I do that then, number one illness wins, and number two I am not holding up to my end of the bargain, my daily resolution to fight. Believe me I will not go down without that fight! Bullheaded? Yup that's me.

Yes, I made the typical resolutions as most of you to lose weight, exercise more, blah, blah, blah, but more importantly to me is to live normally in MY world which is not as normal as many others world. I downed my handful of meds and vitamins this morning. Later today I shoot myself up with Methotrexate. Tonight I take more meds, not so normal for some but for me a way of life. I fought it all for so many years and some days I still do, although I have come to some realization this is my normal now. I don't like it but it is what it is. Rich always tells me the meds are my cure, at least for now. I have to try to believe that as I wish I could throw them all away and never take another pill or give myself another shot, but the minute I start messing with my normal med schedule I pay and I pay dearly. I hope this year I can resolve to the fact this is it and accept it for what it is. Today I feel I can but who knows what tomorrow or next week will bring. This is why when you have chronic illness you resolve to live one day at a time because you have no idea what tomorrow will bring or how you will handle it emotionally. You embrace the day you are given and do the best you can. Today I am hoping for the best year I could possibly have and accepting my daily resolutions, doing the best I can to stick to them. I hope you are able to do the same in your struggles.

God Bless!