Kids, Doctors and School Oh My

We started school about three weeks ago and it’s been smoother then last year. I bought some software where my daughter can do her school work on the computer and it grades things automatically. It makes a big difference when you’re sick because I was beginning to think I might have to send her back to public school and that didn’t sit well with me. She hated public school because of all the tormenting of the other kids so I really felt torn. I had to pay a little extra for the software, but I needed something to make both of our lives better. It helps avoid the fighting with my daughter. I went to my rheumatologist last week and it seemed like a good appointment. He did a lot of blood work which made me feel like a human pin cushion. I hope my vitamin D levels come back okay. I’ve come to realize the levels won’t ever be normal. He did change the times I take a couple of my pills around to help with the morning stiffness and the pain level, but I’ve yet to see any difference. I need to make a phone call to the neurologist and I sent my medical release back in July. She was supposed to call me, but I’ve yet to hear from her. I’m not sure if I like her or not because she was too professional. Another words, I felt like she was stone cold, but sometimes the first visit doesn’t tell it all.

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A Productive Doctors Visit

I went to the rheumatologist last week and the doctor listened to my concerns. I refused to have one of the interns to examine me. Last time I went she was really rough with me. There was no way I was going through that again. Its very hard when a doctor does not respect your limit. This last visit was very good visit. The doctor was able to sit down and speak to me so I was able to voice my concerns. When you have a doctor that listens to your concerns it helps the patient a lot. We have to drive over 2 hours just to get to his office. I’ve tried the local doctors, but they just don’t know how to treat the lupus. So the drive is worth it for me to get quality care from a doctor

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Finally Visited Doctor

I finally went to the doctor last week for my wrist. Actually, I went to my pain doctor and he insisted I go and get it checked out. The doctor put my wrist in a splint up to my forearm. It’s the most uncomfortable contraption. I haven’t been able to put my elbow down or the pain radiates up and down my arm. I have a thing that looks like a sock on my arm which has a shoulder pad in it. I wonder how much they are going to charge the insurance company seeing the prices keeping going up and up. It’s helped stabilize the wrist some. I have been using ice pack on it, well actually a bag of peas on it. I’ve soaked my arm in some Epsom salt too. I hope it gets better because this wrist splint is uncomfortable and it keeps sliding up and down.

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Honesty and Living with Chronic Illness

I have found myself doing a lot of soul searching so to speak lately. I don’t know if it’s the New Year or if it’s just that getting older, either way it’s where I am in my life. A few years ago when my health got worse, I thought that my life had ended because of lupus and chronic pain amongst other health issues. I was very angry because I was sick. I had left a really bad situation in my life and looked forward to new things, but I got knocked down by chronic illness. It was not the life I signed up for, but then again what part of my life has been what I signed up for. Little by little, I have learned that really it was my minds way of coping with the many obstacles of living with a chronic illness. I’ve had to learn a lot of coping skills.

So many people that I’ve talked to either have no idea what lupus is or act like they know what it is and really don’t know. I am the kind of person that I would rather you ask me what’s going on, then having someone stare at me and wonder what was wrong with me. Recently, I was with my family at an appointment and there were 3 kids sitting there. One was a little boy about 8 and the 2 girls were about 8 to 10 years old. The kids were with their rather stern Grandmother. From what I observed the kids lived with her. This particular day I was in my wheelchair as it was one of my bad days. The little boy was on the hyper side to me. His Grandmother was constantly on him and one of the little girls like she was a drill sergeant in my opinion. Kids will be kids. The little boy asked me “Why are you in a wheelchair?” I was quick to respond because I had thoughts of Grandma coming unglued at the boy. Rather then get into I have lupus; I explained to the little boy that my legs are weak at times when I walk. His sibling said under her breath “You don’t ask people that kind of thing.” I told the young girl its okay he asked the question. I would rather someone ask me what’s wrong then to stare at me and wonder what was wrong with me. “

It’s brought about a lot of questions in my mind. “Does other people mind if someone asks what’s wrong with them or rather have someone simply stare at them?” I prefer to talk about my illness, rather then someone staring at me like I’ve got the plague, even though I call lupus the plague. I decided a long time ago that I would be open about my struggles to help others understand chronic illness. So it brings me back to where I started about getting honest with myself. I have learned in the last few years that I needed to be honest with myself. I have found that it was easier for me to stay in that depressed mode rather then pull myself up. At the moment I am trying to pull myself up from depression. In 2008 I made some progress in my recovery, but I had to come to the point of accepting I may have to take depression medication. I have a tendency to not do things out fear of being in pain. If you’ve ever been in pain for any length of time you will understand what I mean. So this year I need to learn to pace myself because when I feel good I tend to want to get everything done real quick and then I am down for 2 or more day. So really I can’t win because I want to be “normal”, what ever that may be. So this year I am going to work on pacing myself and not being so afraid of being in pain. If I pace myself maybe I will have more good then bad days. So I leave this post with a couple of questions.

1. “Would you rather someone ask what was wrong with you or would you rather someone stare at you, or would you rather they turn their head?”

2. How did you get honest with yourself and your life chronic illness or not?

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Another Medication to add to the Mix

A couple of days I went to the doctor I am on an antibiotic.  I hate going to the doctor for medications like I need another medication. So I started my 10 days of taking antibiotic yesterday. I hate medications, but where would we be without them. I will be glad when I am finished with the antibiotic. I have had a really rough week spent a lot of time laying down because of a flare. Its days like this when I really appreciate my lap top computer. I have my feet up which is something I have to do most of the time. Happy Thursday to Everyone.

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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….

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