My View Series #5

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.

*****

Don’t use lupus as an excuse to fail. You define lupus, it doesn’t define you. So get out there and do anything you want, even though people will set every limit on you. Keep asking if you don’t understand something, and research everything.—Kari Wall

- a little lupie -

My View Series #4

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.

*****

Be kind to yourself, be kind to those around you. Educate loved ones. Take time to care for yourself first so you have endurance to care for others. Find humor, chocolate and tolerance with your condition. You don't have to like it, you just have to accept it.—Paige Collins

- a little lupie -

Back on the P

I went to the Rheumy last week and described the latest problems I've been dealing with -- primarily joint pain and fatigue.  My lab results confirmed that lupus activity is up.  At this time, we aren't sure if the lupus is ramping up again or if this is just a mini-flare brought on by "over-doing it" over the holidays.  We decided to put me back on a low dose of prednisone (1-2 mg/daily) to help manage the symptoms and hopefully keep the lupus from getting worse.  The good news is that Rheumy said that as long as I don't have a major flare or have to go on 10+ mg of prednisone, I don't have to re-start my 6-month clock.

I talked to Rheumy a little about when I am supposed to call in if I notice any symptoms.  I feel silly calling in every time I have a little joint pain or feel fatigued.  It's really about knowing my body and knowing when something is out of the ordinary.  If I'm ever unsure, he said it is better to just call.

- a little lupie -

My View Series #3

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.

*****

Take every moment as just that: a moment. Truly, time, patience, and rest are essential to begin the emotional healing process of living with a chronic illness as opposed to being defined by one. The most challenging thing has been to not let lupus define me, even on the days it dictates what I am capable of doing.—Anya Brodsky-Smith

- a little lupie -

My View Series #2

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.

*****

Seek the support and help from those around you. Don't be afraid to ask for help. Educate yourself but use multiple sources. Finally and most important, listen to your body! Rest when it says rest and don't feel guilty about it.—Cindy Sawyer

- a little lupie -

Small Victories

I woke up for the first time in weeks without joint pain and stiffness (okay, maybe just a little, but much improved)!

I went to do my blood work and there was no line!

I went to the hospital mail room to mail out my perscription drug claims and caught the mail man before he left with the outgoing mail for the day!

I got out of the parking structure within the grace period and didn't have to pay!

Today is shaping up to be a good day!  What I've learned is that I have to make the most of these good days because I never know how I'm going to feel tomorrow...

- a little lupie -

My View Series #1

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.

 

*****

It's going to be a fight, but you will find a strength inside you that you never thought you could have. When doors to life and normalcy shut, fight like hell to find a window. If you keep fighting back, lupus will never be able to take over your life.—Charlene

- a little lupie -

Tis the Season...

...for lupus flares :(

I think I've mentioned before, but the holidays seem to be the time for my lupus to flare.  It may have to do with the weather and the additional flurry of activities.  I don't feel particularly stressed, but I do have a lot more going on, both at work and at home.

This year, I am also dealing with being off of some of my medications.  I'm no longer taking prednisone, azathioprine, and procrit.  Some of the symptoms I've noticed are joint pain, fatigue, and mouth sores.  For the past week, my eyes have felt strained and I've been getting bad headaches...but I'm not sure if that is due to the lupus or not.

I had another outdoor service project that I had to go to for work on Friday.  I was dreading it all month.  The service project is "mandatory" and while I probably could get a medical exemption, I haven't decided how "public"  I want to be with my condition.  I don't want people to define me by my condition and I don't want people to feel sorry for me.  At the same time, I do want people to understand why I may not be full of energy and excited to do these types of activities.  So, I went to the service project on Friday but tried to lay low and stay in the shade.  There were a few others doing the same, and I've learned not to judge people as being "lazy" or "unmotivated," because I never know what their story is.  Sometimes I do wonder if others are dealing with the same thing as I am.

I did get a few mosquito bites that are large and painful.  As I've mentioned in a previous post, I'm wondering if my extreme reaction to mosquito bites is related to lupus.  I think I'll ask Rheumy about this at my next appointment.

I don't get the typical malar rash from the sun that other lupies get, but I am wondering if I have some kind of photosensitivity.  The sun seems to zap my energy and can make the malaise kick-in.  When I got home from the service project, I took a shower and knocked out at about 4:30 pm.  I slept all the way until 8:30 am the next morning and still felt tired.  I forced myself out of bed to eat and move around but was dealing with a headache that only got worse with bright lights.  I decided to head in early again that evening and finally feel back to normal today.

I've kind of been in denial about this flare because I was doing so well.  I was just about to hit my 6-month remission milestone, and I'd hate to have to restart my clock again.  I feel like it is passing, so I'll see what Rheumy says when I meet with him in a couple weeks.

- a little lupie -

Update

Okay, I am horrible at updating these days, but that is a good thing!  When I first started this blog, I wrote regularly because lupus was always on my mind.  These days, it is something that I keep in the back of my mind, but I've learned to manage and live with.

In my last post, I mentioned that I have been gaining weight like crazy.  I checked my thyroid level and it is in the normal range, so that's likely not the cause.  I'm trying to make an effort to "get moving" more.  Now that the weather has cooled down a little, we're taking our dog walking after work more often.  Nothing too strenuous, but it gets the blood flowing a bit.

I've been tapering down my Prednisone for the past few months and have been completely off of it as of October 1st.  I had a little joint pain and fatigue the first couple days, but my body has adjusted and I am doing well.  My blood test last week showed that I am stable.  My next visit with Rheumy is in two months, and if I remain stable, he'll give us the all-clear to start trying for a baby.  I'm not sure if we're ready for that yet, but it is nice to have one hurdle out of the way.

- a little lupie -

Not so Little Lupie

I have been really bad at updating. I am still doing well. My blood counts continue to remain stable and somewhat normal (low side of normal). I am down to 1 mg of prednisone daily, but despite that, I am gaining weight like crazy!!! I've been gaining about 2 pounds a month, and I feel like I haven't been eating more or exercising less than normal. I've tried to make smarter choices when eating and even went to a crossfit class (where I DIED), but the scale keeps going up. I brought this up to Rheumy at my last visit and we're going to check my thyroid to see if my medication needs to be adjusted.

Other than that, all is good in lupie land. I still don't feel like I have tons of energy, but when I look back at how I felt a year ago, I am 1000% better. It is hard to relate to how fatigued I was back then...even though I went through it, I have a hard time remembering exactly how debilitating it was. I'm thankful to be able to make it through a day of work now and even have energy to run some errands or go out to dinner afterwards. I still have to be careful not to overdo it and try to keep a day free to just relax and recuperate.

 In case anyone still reads this, I'll try to be better about updating...

 - a (not so) little lupie -