A Crappy Few Days for Me

I have been really feeling bad. I’ve had a migraine for 3 day and I feel like I’ve been hit by the local train station ran me over. I am still feeling pretty bad. I am forcing myself to do a couple of posts. Sometimes it helps to get your mind off the pain. I hate being in pain everyday. We are suppose to have some snow tommorow. I am not looking forward to snow. It always makes me achy all over. I hope this flare and migraine passess soon. Happy Weekend to Everyone…. I hope I feel better soon because Flares SUCK. I can say that in all caps because their is no other way to explain them…

Lupus Rant Again Sorry…

I feel like crap today. My pain level has been through the roof today and none of my meds are helping at all. Its just been a crappy day all day so far and guess what? RAIN is coming in Its no wonder I feel like crap. I did manage to hook my heating pad up to an extension cord so I could tolerate the pain somewhat during school. I wish I knew of a place to get a cordless heating pad instead of the cord. I want to find something I can warm in the microwave to help with my pain. I see diffrent things just so unsure of where  to purchase one.  Well now I ordered a book for my daughters school work and well the person sent me the wrong book. ACK… Now we are going to be behind on some of her labs. Geez……. Well I guess we are back to square one….. Well I just hope the rest of today will be better.

Appointment Cancelled 3 times in a Row

After the 3rd appointment for my daughter being cancelled it gets very annoying. I am not sure if I should find a different health care provider for her. Its down right annoying to deal with this as a parent. I realize the excuses may be real, but its very annoying when you show up for an appointment and they don’t have the decency to even call to tell you the health care provider is not going to be in for the day. I am just in a ranting mood because Its hard enough to make it to an appointment as I only have so much energy for the day. Its a big energy waster and chances are they won’t reschedule the appointment for another 2 weeks. This is plain old crazy. How many times is too many times to cancel an appointment for one person? I guess that’s the question. I know life is life , but three times canceling is plain old crazy…..

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……..

A Blessing and a Curse

Today we had to get a new tire on my car. It wasn’t as expensive as it should of been. It was one of those days that my wheelchair gave me a break. The owner of the shop gave me a fourty dollar break on the bill. It was a help because money has been so tight, but the tire needs to be changed.  It was a pleasant surprise. It’s been one of those days when my spasms in my legs were so bad. I made a guy in the auto place uncomfortable so he walked out. Probably because I am so young. A lot of people don’t know how to react to people with disabilities or its the it can’t happen to me saga. I was once one of those people. Well that kind of thinking did me no good. Its embarrassing to me when this happens. I hate these spasms. They plan old suck, no other way to explain them. I will be glad when this flare passes. Then another bomb shell came out My neurologist is no longer around he left on sick leave and never returned, so I don’t know who my neurologist will be. I had really liked him a lot and its hard to find a doctor that is compassionate and listens and REACTS,,,, Well it looks like its going to storm tonight, so it explains my pain level, Yuck Yuck…..

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.

Rant On and On….Wordpress Crazyiness

Well tonight I’m pretty tired. Sometimes dealing with wordpress is a lot like making your head spin around and around. I was helping another blogger with some tweaks and well none of the files I uploaded wanted to unzip. How crazy is that. Bad enough I feel like crap without wordpress being a royal pain in the but. Then I am avoiding updating wordpress because there is so many updates to make. I have yet to find an easy way to do it. I manually upgrade instead of using a ftp that has drop and drag, which I can’t seem to find a out which ones are deccent. If only it was easier to upgrade. Sometimes I miss blogger, but reallly not. But I try and try it keeps my mind from melting down, which seems to happen very easily since living with lupus. I never seem to have enough energy to get things done. Many times I feel guilty because I have to ask my daughter for so much help because of my lack of energy. This disease seems to take its tool on everyone. I go back to the rhemuotologist this month. I look for him to check my Vitamin D levels again. Well I know I’m going on,but I don’t seem to understand why this crazy disease and its side dishes do all this to my mind, body and soul.   Well I’m off again…

Rant About Darn Pharmacy and Doctor’s Hours

Well I’m on another rant today. I get up feel half way good then boom afternoon comes and I totally feel really yucky. It don’t help that I ran out of one of my medications because I thought it had a refill because the bottle had a refill and then the insurance company made the pharmacy call my rheumatologist. When n they are only around one time a week it makes it difficult to get medications refilled. SO my advice to you all just cause you got one refill don’t always mean you really want it cause the pharmacies/insurance companies can’t count. Its frustrating because I feel like I’m starting from scratch with my medication for nerve damage. It’s the one medication that keeps me from going out of my mind with the pain. Yes, I’m ranting, but if I don’t It wouldn’t be my page.

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….