Now I Lay Myself Down To Sleep

One of the hardest things to do if you have a chronic illness is to get a goods night sleep. I’ve spent many of nights wide awake instead of sleeping. Its either, I’m wide awake and my mind is going a mile a minute or I’m hurting too bad to get a wink of sleep. I’ve struggled for years over getting a new bed, but I’ve always found an excuse not to buy one. My bed use to be comfortable, but now it’s like sleeping on a bumpy blanket. The bed used to be comfortable, but not anymore. I’ve been checking out the antique style beds at time 4 sleep. One of my favorite beds is the Jessica Metal because of the decorative head board and foot board. The spiral swirls remind me of the lollipops from Disney world. One of my favorite time periods is Victorian, so this bed fits me just right. I like to look at the Victorian homes on TV and online. I would buy a memory foam mattress at the same time because I’ve heard such great things about memory foam mattresses. If it would help me not wake up feeling like I was hit by a truck in the morning, I’d love it. I would buy one of the leather beds if  I couldn’t buy the Jessica Metal bed.

of I couldn’t buy the Jessica Metal bed.

Lupus Robbed Me of My Energy !!!

I am struggling with my energy level, It gets to early afternoon and I’m totally exhausted. I could understand if one of my meds were changed, but they haven’t got a clue what to do to help. Its crazy to feel so tired when you do so little. Its not like I’m working out in a Gym or something. Geez I hate this damn lupus and all it does to me.

Does anyone know what could help with my energy level, I’m at a loss.? The doctor says its LUPUS, I hate LUPUS grrrrrr……..

Falling and I Can't Get Up

Really I don’t know where to start. Its been a really rough week for me. I had a really bad fall a few days ago. My dogs leash got wrapped around my leg and I went flying. I shouldn’t have been walking to begin with. I was having a crappy day with my gait(walking). My balance was really bad. I should have been in my wheelchair, but I wasn’t. I fell and hurt my knee and the back of my knee. My whole left leg is really sore. Thanks to this crap I’m in a flare and really don’t want to post. I want to lay down in bed and go to sleep. I feel horriable today , but I already have obligations. I hate this crap when it knocks me on my but. I’m really tired, but can’t rest. Well I’m back in my wheelchair totally for now. I guess My Septemeber flare is hear to visit. The pain level gets so bad during these times.  This week I got to the rhemotogist, no doubt to be stuck once again. I feel so exhausted from all this crap. It has such crappy timing. I know I’m ranting. I have enough pain to deal with, without falling. This Lupus stuff just plain old sucks.

What Lupus Takes and What We Take Back

What lupus takes  and what we take back

Lupus takes away life

It tears families apart

It makes hearts break

It spoils good things.

Takes away youth.

It hurts little children whom are inncocent.

It causes so much pain inside and out.

It cost us all millions in lives and money.

The only positive it gives is the will to fight back.

It teaches us to appreciate the good.

It shows us the postives in others so we can appreciate them all.

It teaches us to appreciate the little things in life.

I will not let it win because I will perserve against it again and again.

I am a survivor and I will not be its victim because I am a fighter until the end.

My Achy Swollen Back Again……

Yesterday I was hoping I would feel better, but I don’t my back is killing me. Everything is swollen. I took something to help and its done me no good, atleast it feels that way. Its proably the lupus causing a bunch of inflammation. I can’t stand anything cold on me so heat is the only option I have. My old heating pad has had more miles then me proably- LOL. Some people can take anti inflammatories, but I can’t because of allergies or crazy reactions. One medication I took I felt like I had morning sickness all the time. The doctor couldn’t believe I was having such a bad reaction to the medication. Needless to say I am really sensetive to a  lot of medications. When I start a new medication I always hold my breath because I never know how my body is going to react. Well I guess I’m off my rant for now….. Until next time

The Word of the Week is Frustration

The word of the week is frustration. Frustration is something I live with each and every day. Lupus kind of makes things go this way. . There are days where the only thing that keeps me going is my family. It’s the smiling faces of my family or the silly things that my dogs do. My male dog Mason was barking at his retractable leash one day. We had put the leash on the ground pole of our porch and every time he moved it made a whine noise. It was really funny watching him bark at the leash for no reason. You see he tries to act like he is tough. In reality he is just a big baby.

Sometimes the frustration can be more than I can bear. It makes me want to lose my mind sometimes. It’s the wishing that I had my energy back and my life back. Once upon a time I worked as a CNA. Ya, it was a dirty job, but it was a job that I really loved. I was able to take care of others and it made me feel useful. I was doing for them what I would want to do for myself. It’s hard to be in there shoes in some aspects. It upsets me when people complain about there jobs because really they don’t know what they really do have. So my advice to all you that hate your jobs either get yourself a different job or be quiet. I’m sorry I am so blunt about it, but I feel very strong about it.  

What is frustrating about living with a chronic illness to you? Share your story here. I will chose my favorite and write a post linking that persons blog in my post entry. So Share your frustrations here….

Dear Mr Energy Monster

You entered my life over 7 years ago. You took away my youthful energy. You made simple things like cooking a meal difficult. They feel more like I’m running a marathon. You can leave anytime. I did not ask for you, nor did my family. You can leave me and find another home and that does not include me or anyone else. I have asked myself over and over why you came to visit me. I still don’t have the, answer to that question and if you would kindly come forward I have a few things to tell you. You’ve invaded my life like the bad sinus headache and that’s saying it mildly. I will be glad to release you anytime you can take your no good butt and leave me alone.

Not Sincerely Yours,

Chronic Chick

Slowly Recovering from Surgery and Daughter Update

I am slowly recovering from my surgery it seems to be taking forever. Sometimes I feel like the incision is going to come apart. I move my arm a certain way and it shoots pain. It really is annoying to deal with this all.  I am thankful for my help at home. My daughter was sick today so we had to cancel an appointment. She is feeling better now, which is great. We go to the doctors Friday to see what the test results are. Last week my daughter missed her tae kwon do because of my surgery. I do feel bad she missed it. She is doing really well in it. She has 2 of the 3 progress strips that she’s suppose to have. She has to memorize the oath for tae kwon do to get the last strip. I am proud of her. I am putting together some stuff for a new blog. Just hope that I can come up with a great title. It takes me a while to pick a name. It’s the writer in me. I do love to write. And yes, I write more then just about my chronic illness stuff. I have bits and pieces together for a couple of books that need a lot of work.

Living with Lupus and its Side Dishes

This is a blog entry I wrote on my other blog, that I don’t keep up to date- (Lupus Side effect). I thought I would share it with my readers.

Lupus is a lot like walking around in the dark not knowing which direction you want to go in. Each day is a new adventure in living with lupus. You never know what to expect. When a day is going along just right it’s hard to believe. It’s a lot like living in a dark room, and not knowing when someone is going to open up the door and says “IM BACK”. The life of lupus can be an agonizing nightmare or you can learn to roll with the punches and take what it gives you and punch it right back where it counts.

Life with lupus is a lot easier when you accept what it gives you to deal with then being in the feel sorry for me mode. Yes, I still have those moments but, since I’ve accepted that I am who I am and lupus doesn’t have an exit door. I do wish this disease to be a thing about the past. It has taken me years to accept that lupus has given me some gifts.

Life with lupus had given me the ability to appreciate the things that I never realized were sitting right in front of me. The sky has much to offer whether, it’s the puffy white clouds or the storm clouds rolling in. I appreciate the people around me and the things around me better. I have been made to slow down and it took me long time to accept I had to slow down. Initially, I slowed down too much and thought the world had ended because once again I was given the bad end of the stick. But I had to realize God must have given me a life with lupus to show me some kind of purpose. I am still searching and looking for the exact answers but, I know that one day I will have the answers. If the answers never come at least I know that I have kept on living and search for that small light at the end of tunnel of lupus.

One thing I would say to anyone living with a chronic illness is to remember just because your sick don’t mean it’s time to stop living. There is life after chronic illness. You have to remember to get back on the ship I call life. Sitting in a corner looking at the wall isn’t going to work in this life because once it’s got you; you’ve got to learn to live with it.

Random concerns of a lupie

This weekend is almost over and it seems like it just started. Before long I will be starting school for my daughter. Its pretty scary were jumping into homeschooling her for the first year. She’ll be a freshman. It will be nice to have her around, but its pretty scary to me. She’s a pretty good student so I hope it continues as at home. It was a difficult decsion to make especially dealing with my sickness from day to day. If she wasn’t a motivated learning I thnk I would think twice, but luckly she is. The school in our area has a lot of problems.

My aches and pains have got the most of me today. I’ve felt like an 80 year old woman not able to move without my body feeling like its in traction. I miss my old body and my old abilty to function like normal, whatever that means. My shoulders ache and my legs are so sore. Sometimes my aches and pains get the most of me. Sometimes the only thing that keeps me going is tommorow is going to be better. Wednesday I have to have surgery to remove a cyst and it scares the hell out of me. I’m tring to be brave,but its easier said then done. Its a first time for me and I’m  tring to not focus on it at all.