Be Kind to Your Pharmacist

I used to work in a pharmacy and would always get asked why the $%^@ it took so long to fill a prescription.  I mean, all they do is count pills, right?  This blog post does an excellent job explaining:

http://drugmonkey.blogspot.com/2006/08/i-realize-today-ive-done-you.html

Just a reminder to be kind to your pharmacist!

- a little lupie -

Cousin It

Cousin It is back...meaning I am shedding hair like crazy again.  :(

- a little lupie -

Sophisticated...moi?

In my last post, I mentioned that my lab results weren't too good.  When I went in for my appointment with Rheumy, I think he was surprised when he asked how I was feeling and I said I felt okay.  He went over my high ds-DNA, which is much higher than it has been in the past.  My WBC and RBC counts were low, which is somewhat normal for me.  My C3 complement, which I mentioned in my last post, is also low, which is often seen when lupus is active.  None of my prior labs had shown low C3 complement, so this is something new for me.  I also showed small amounts of protein in my urine.

Overall, though, since I was feeling okay, we decided to keep my medication the same and just keep an eye on things.  Rheumy thinks that being on the low dose of prednisone is helping to keep the lupus under control.  He thinks it is better for me to be on a low dose rather than trying to get off and risking a major flare.

I did ask him if it would be okay for me to self-adjust my prednisone dose based on my symptoms, and he said that for me, since I am a "sophisticated patient," he would say okay.  LOL.  He warned not to jump up and down too often and to stay at a dosage for a few weeks before changing again.  He said that some patients try to jump up to 20 mg then drop back down again too quickly.  I reassured him that I was only thinking about small changes, like bumping up from 1 mg to 2 mg if I am having a lot of joint pain.  Anything major, I would call in.

My last question to him was what was considered "remission."  He said that different people have different definitions -- to some, it means no symptoms and no medication.  To others, it is okay to be on some medication.  I told him the reason I was asking was that I wanted to apply for life insurance and it was one of the questions on the form.  He told me that with my recent lab results and the fact that I was on prednisone, I should probably wait because I'd likely get rejected again.  Le sigh...

- a little lupie -

Uh Oh

I have the laboratory send me a copy of my test results, so I usually see them before I go to see Rheumy.  I got the results today and they don't look too good.  RBC, WBC, Hemoglobin, and Hematocrit are all low.  C3 complement is low, which according to Google means that I am more prone to bacterial infections...a low C3 is often seen in people with auto-immune disease.  My sedimentation rate is high (34), which indicates inflammation.  And the one that got me...my double stranded anti-DNA is off the charts (>300) which indicates more lupus activity.  I don't think it has been this high for a while.

Despite the lab results, I have been feeling okay.  I've managed to start exercising a few times a week, and I feel like it is helping me.  I see Rheumy tomorrow morning, so we'll see what he says.  Last time I went, he indicated that they usually will not change my medications if I am not experiencing symptoms, despite what the lab work says.

- a little lupie -

My View Series #10

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

I was unstoppable until this disease knocked me on my behind. Words couldn't express the terror I felt. I was scared. With encouragement, support and research, it comforts me to know I am not alone. I am still unstoppable. With every bad situation, good will come out of it.— Carolyn Kingsley

- a little lupie -

My View Series #9

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

I am a very active person who was diagnosed with lupus. The slow days when I can hardly walk and the pains traveling here and there are not pleasant. But I refuse to let these things get the best of me. I stay positive, rest when I have to, take medicine when needed, and do all I can on the good days. Love those good days. I will not accept defeat. Fight! And enjoy each day as it comes.—Louise Linda Sherriff

- a little lupie -

Life Insurance

I'm not sure if I wrote about this earlier, but shortly after I was diagnosed with lupus, I had tried to buy life insurance and got denied.  I had been considering life insurance the past couple years but always put it off because I didn't have anyone that depended on my income.  I sure wish I had got it when I had the chance.

When I was denied, I was told to try again later.  If I can show that my condition is stable and/or improving, I may be eligible.  It will likely be at a higher price, but hopefully I can get something.  I'll be trying again soon...wish me luck!

- a little lupie -

P.S. Isn't it sad that the people most in need of insurance are the ones most often denied coverage?

My View Series #8

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Educate yourself about the disease and if you don't have a strong support group, find one. Don't ever be afraid to say, ‘I need someone to listen’ or just someone to give you a warm smile. Sometimes people with lupus feel like no one understands but there are people who feel your pain and have walked in your shoes with this disease, even though it affects people differently.—Antinea Carpenter

- a little lupie -

My View Series #7

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Not a day goes by that something in my body doesn't remind me that I have this "lovely" disease. It's hard because people look at you and think "you look fine." Just smile and try to keep a great sense of humor. IT is what IT is, but it doesn't have to define WHAT or WHO you are!—Amy Bass

- a little lupie -

My View Series #6

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Having lupus means you embrace the good days and try not to beat yourself up during the bad. You can live a “normal” life but you have to listen to your body. Rest when you know you need to and trust that each flare will eventually pass. And you’re never alone, I promise. We’re all here to support each other.—Maurissa Tancharoen

- a little lupie -