Chronic Chick Talk

Struggling to Find the Postives of Living with Lupus

When I was in school, I despised writing or reading for that matter. Writing has become my release since being sick. I can express my thought and feelings on living with a chronic illness. It also helps me be an active advocate for lupus, chronic pain, and fibromyalgia. Its become an important therapy about living with all these chronic illness. Its been my way of making a positive out of a negative. For years I went through periods of being mad at the world because I was sick. I blamed myself and asked over and over “why me”. Its not been easy because I’m not happy what lupus has done to my life. I have periods of not being able to find simple words. I’ve called people crazy names and on a regular basis I call my daughter a cow. Its related to the stroke I had thanks to lupus. If it was not for lupus I probably wouldn’t have found my love of reading and writing. I read almost anything I can get my hands on. I tell my daughter that wisdom comes from knowledge. She’s yet to find my love of writing or reading. But slowly she’s seeing that reading isn’t that bad after all. I share my words with others to say that life after lupus can have some positives even if you do struggle each and every day from the pain and suffering. I live with the thoughts of I’m not going to be a victim of lupus, but a survivor of living with lupus.

Sending Butterfly Hugs to Everyone :)

Once again I’m send you all hugs and wishing you all a flare free week. Butterflies mean a lot to me because they seem so free. I want to be free of lupus.

I Just Love Flowers So Much

Living with a chronic illness it’s always nice to receive flowers. It’s nice to feel special and appreciated. It makes a bad day a good day. I think everyone loves flowers for all occasions. My mom loves to receive birthday flowers. It always lights up her face. Her favorite flowers are red roses and pink carnations. When she gets flowers she loves to dry the flowers and save them for years to come. She has a red rose that she’s kept for years. When my uncle died we sent sympathy flowers to my aunt. She appreciated the flowers. We sent her the flowers to enjoy rather then put them at grave site. It was nice for her to have to wake up in the morning with a beautiful floral arrangement. When I went to my friends wedding her wedding flowers were peach roses and babies breathe. It was a beautiful arrangement. I was impressed about how such a simple arrangement could look so beautiful. She has peach and white ribbon around the floral arrangement. In the spring, I love to look at the many colors of the flowers. One of my favorite flowers is the tulip. I like how some floral shops have such a wide variety of different colors.

A Smooth Day in Homeschooling with Lupus

We finished school early today and it was great. My daughters attention was really good so we were able to move throught everything smoothly. At lunch time she usually takes the dog for a walk and I think that helps her regroup and changes her focus. The dog needs to walk as he is over weight. We have been struggling to lose his weight. We get some of the weight off and then the weight is right back on him. We just can’t win with this. He is constantly wanting more and more food.

Hope everyone is having a good day in the life.

My Poor Aching Feet

I’ve had a lot of issues with foot pain for years because of the nerve damage. The nerve damage makes my feet very sensitive. When I went to the doctors the other day they ran this spiky thing on my feet and I went through the roof. I hate having so much pain in my feet. It doesn’t take much to set off the pain in my feet and legs. I just can’t win with the pain levels. Orthotics is one option to help reduce the pain in my feet and my back. It helps with your pain by adjusting the alignment of your feet inside your shoes. If your shoes aren’t comfortable your whole body aches, at least mine does. When you have lived in pain for over seven years you will try almost anything to help reduce the pain. WalkFit Orthotics comes in eleven different sizes for men and women and you can adjust the height of the insert for a custom fit. The funny thing is they actually want your used insert when they wear out and they will send you free replacements for life. That’s a pretty cool deal as inserts for your shoes can be pretty pricey if you’re on your feet all the time.

Trying to Stay Warm with a Chronic Illiness

Living with a chronic illness I have to be careful what I wear. I wear pants with socks all the time. I have to always wear some kind of sock, hose, or tights. If I don’t wear them I pay with a lot of pain. Once in a while I get a big idea that I don’t need socks or pants and I pay with pain. I really like wearing Tights in the winter time because they help me stay warm. If I’m warm I’m not in as much pain. Finding different styles and color makes wearing tights and socks fun. I’ve noticed lately they have tights without the feet. Hue has some pretty wild colored tights. One pair is dark blue with black swirls. It’s nice to look at, but not my style. I prefer the solid color tights. Everyday I wear socks because I spend a lot of time indoors. I like different colored sock because it adds personality. I’ve have some silly Christmas socks with reindeers on them for the holidays.

Mc Donald’s or Dr Office ? Do Tell

Many times doctors don’t know what its like to be a patient. They are in such a hurry that they forget that your not a number. They are rushed to go from patient to patient until the day ends.  This don’t help the patient especially when you are having a lot of issues with your health. You leave the office without some of your health issues addressed. Then you as the patient walk away disappointed and upset. I know myself that I hate calling  a doctor’s office in between office visits. I don’t want to be one of those annoying patients the office staff hate to receive calls from. I know this from both aspects because I was a Nursing Assistant. I don’t know if that’s a good thing or a bad thing. It was a job that I loved and was passionate about. I could leave work after being exhausted, but I felt full filled.  Now having the shoe on the other foot it is very difficult. I’ve been belittled by doctors and I’ve been ignored by many.I’ve also meet a few that have been real angels on earth. They’ve been compasionate and wonderful and others have been horrible. I went through years of hell being in pain and some people telling me it was in my head. After years I got some validation that my symptoms were real, not in my head. That’s enough to make a person feel crazy.

I think the biggest problem with doctors visits is the doctors are so rushed and many of them forget what its like to be a patient. They have only a certain amount of time to see a certain amount of patients. I know I’ve been at the doctors office and the buzzer goes off. Then the doctor needs to go to the next patient.I can remember when I was in CNA class they made us act like patients so we could understand what it was like to be a patient. They would put Vaseline on a pair of glasses and ask us to read something. Another exercise we had to use a wheelchair to get around and that was an obstacle especially with the Vaseline eye glasses. All in all I feel that doctors should have more time with patients because it would give the patients enough time to explain what’s going on with there health and time to address all the issues. I think if they have more time with patients it would save a lot of money and time because our issues would be addressed at the visit. Instead of feeling like your at the local Mc Donald’s drive through for  Cheeseburger and a small fry.

How does your doctor’s office visit make you feel? Do tell…  I’ll link you all up in a post if you give me a comment on this- :)  as a thank you….

Part One of Doctors Appointment

Yesterday, I went to rheumatologist. Well after after a long ride we ended up getting lost some how because we ran into construction and they decided to change the name of a street in the mean time. Its been 6 months since I’ve seen him so a lot of things looked different. We ended up taking a tour of the bad end of town. That was not fun at all. Eventually we did find our way to the doctor. After taking an unwanted tour of things. When we got there I was wore out just the stress in its self. Well I was not so blessed to have a student that did not know what the word “OUCH” means. She decided I needed a work up for some darn reason and she needs a lesson in what pain is. I can’t believe this. Her demeanor was I’m going to do this exam to prove I can do it. Then after she pooked a proded at me. The doctor comes in and does his exam on top of it. Needless to say I feel I’ve been ran over by the train station once again. Its absolutely crazy and I never got some of my concerns addressed because I no longer had my notebook in my hands. Well in the end I got a little bit of a pay back she had to help me put my sweaty socks back on because I could not even put my own darn shoes after the exam. Its not much of a compensation, but at least I can remember the expression after a horrible exam. What I learned is I need to be more forceful when I hurt leave me the hell alone…  Well that’s part one and part two will come soon.