.Lupus Lady Nia

Fitness and Function

2010-07-29T09:38:00.000-07:00

I ended up finally joining a gym in May. 24 Hour fitness was my gym of choice mainly because it is close and I had heard many bad things about the second option. So far I like it. What really keeps me going is the Hip Hop Dance class. It's fun and energizing and I really feel like I can dance! lol Not that I can. The instructor is funny and just keeps you energized. I had a tough time making it through to the end of a hour long class, but now I can do it without being completely exhausted. I also attend the Zumba and Kickboxing class. I'm also happy to say I've lost a few pounds and my clothes are looser.

Getting started on an exercise program is difficult, but I can honestly say I feel considerably better since I've been exercising regularly and eating healthier. Sometimes the junk food calls my name, but for the most part I'm doing well with my new (hopefully) lifestyle.

Lazy Days

2010-01-17T10:58:00.000-08:00

Sometimes you just need a lazy day. I spent a good half of the day sleeping on Saturday. I accomplished nearly nothing and I'm okay with that. I felt very rested and ready to take on the week after my all-out-do-nothing day. It's a rare a occasion to get one of these, so I took full advantage and enjoyed myself as much as you can while sleeping. Having lupus, your body is just tired on a regular basis. A good lazy day is great medicine!

Brief Update

2009-12-27T14:05:00.000-08:00

I haven't posted in a while so here is a brief overview:

My lupus is definitely active now. The funny thing is sometimes when the lupus is active I feel fine for the most part. And other times when the doctors tell me it's not active I feel like a Mack truck has hit me. Go figure.

I get what I call "phantom injuries." When sores pop up on their own. I'll have people ask me "How did you do that?" and when I tell them I don't know, they look at me like I'm a clumsy idiot. Trying to explain to they I have lupus and what that means is to much trouble to do so often, so clumsy idiot it is.

I've also developed a lot of rashes all over my legs and some on my face, which really bites. The worst part about it is they itch like crazy. I'm sure I would have scratched my leg raw if it wasn't for the fact that have fake nails on right now. The one on my face doesn't itch but it looks hideous and I detest it. I try to cover it the best I can with my bangs. It's really not that bad, but I hate having to compensate or make due all the time.

I have an eye doctors appointment about a week from now. He's going to do an evaluation and decide if I'm eligible to do the surgery. Or really rather or not he will do it. I have no clue how that's going to go and I'm surprised I'm not that worried about it. I've almost made peace with the lose of my sight in my left eye. I never thought I would. My journey has not ended yet though.

Well, that was a brief update. As brief as I can be anyway. Ta-ta for now!

Things are going Better

2009-07-24T15:51:00.000-07:00

So, from my last visit I had a scare. It was a possibilty that my kidneys were in trouble, but it turns our everything is okay. And my doctor told me at my last appt on July 21st that my lupus was not active right now. I didn't expect her to say that. So that is great news. On the other hand I'm still extremely aching and still have to take Tylenol to go to sleep most nights.

I also went to a Retina specialist and he said my retina was attached and seems to be fine. So I may be able to have another surgery on my eye and possibly see out of it again. I don't even want to get to excited about that though. We'll just see how it goes.

Never Good News

2009-04-19T19:17:00.000-07:00

I just started going to a new doctor. I like her pretty well so far. She's young so I feel like she will be more willing to try new things and not keep me glued to the same old weight gaining steriods. Since I'm a new patient she ran every test known to man it seemed like. I had to give quite a bit of blood for all the tests she wanted. The results were not so great. My disease is definitely active. I could have told her that without the tests. But what I didn't know is my kidneys could possibly be affected. Will know more later. Have to do yet another test to confirm if this lupus is attacking my organs or not. Up until now it hadn't. Of course I always knew one day it would. You just hope that is later rather than sooner.

2008-09-28T12:29:00.001-07:00

The new job is going okay. I would be much happier with it if it paid more. Doesn't quite cover everything. I'm used to more pay. When you make more money, you spend more money. It's not easy to downsize. I have salary bills with hourly pay. It doesn't quite add up. The only luxury I'm allowing for is driving my car instead of riding the bus. But that too may be a reality soon. There were a few teaching jobs still available. It's a long shot, but I'm still trying.

Looks like I will be substituting a few days a week to make ends meet. I don't mind doing it. I just don't know how I'm going to muster up the energy to accomplish it. Who knows. It may work out okay in the end. I'm tired of worrying about things.

Job Hunt Successful

2008-09-07T12:06:00.000-07:00

I was finally able to snag a job. I'm to be an emergency dispatcher for an alarm company. Right now I'm in training. It's supposed to last 3-4 weeks. I actually in the last week now as I write this. There is so much to learn. All the codes and different ways to handle each call. It's a little stressful. I'm always worried that I'm going to do something wrong and cause a catastrophe. I'm a worrier if you hadn't noticed.

And my bronchitis doesn't help matters. It's getting better, but I still have trouble sleeping at night, which doesn't make for a cheerful morning person. Plus I really want to start back working out. I was doing so well before I was forced to stop due to heavy breathing and heavy pain afterwards. It has put my weight loss at a screeching holt. And I"m almost at my goal point. Bummer is the word that best describes this situation.

R.I.P Bernie Mac and Isaac Hayes

2008-08-12T15:45:00.000-07:00

This is a sad note to report. I was saddened to hear of the passing of Bernie Mac and the very next day Isaac Hayes. Two very talented men who will both be dearly missed. Bernie, born Bernard McCullough, died from pneumonia complications at the age of 50. Isaac Hayes was found unconscious in his home by his wife near a still-running treadmill. Hayes was taken to Baptist Memorial Hospital in Memphis, where he was pronounced dead at 2:08pm.

Bernie's Bio

http://www.netglimse.com/celebs/pages/bernie_mac/index.shtml

Isaac's Bio

http://www.imdb.com/name/nm0005002/

Bronchitis Blues

2008-08-08T22:30:00.000-07:00

My bronchitis has come back. UGH! I never really thought much of it until I had it. I thought I was having heart failure when it first worked its agony. I had my cousin drive me to the emergency room. It didn't take long to get me back since it made my breathing short and my chest hurt. That is one thing I found out about Emergency rooms. If you are having any kind of chest pains or breathing trouble, you go straight to the front of the line. They don't want anyone dying of a heart attack on their waiting room floor. So after a hour or so wait, I had x-rays and confirmed I had my first case of Bronchitis. It hurt like the dickens.

The doctor gave me antibiotics to take. They of course made me sick to my stomach, but I forced them down each day. Only to find out later it was pointless. I did some research on the we. Bronchitis goes away on its own. Antibiotics and pain killers are useless. You just have suffer. Hence, why I'm up in the middle of the night typing on my blog. The doctors give their patients this stuff basically like a placebo. It won't help but otherwise they would be angry that their pain is not relieved and they're leaving empty handed. It's just something to quiet our complaints.

Aleve is not working. And this surprised me, because it usually knocks out my worst pain with ease. The only relief I get is staying in an upright position. Not the best way to hold your body when you're trying to sleep, let me tell you. But it's the only way I can get even a little shut eye. When it went away I was ecstatic. Pain free sleep at last! And now it's back. I have no clue as to what I did to make it return. If I knew I would certainly rectify it. So here I sit, breathing shallowly to lessen the pain and wondering how long I will have to endure.

Moving Day

2008-08-01T16:27:00.000-07:00

My sister asked me to go help her move yesterday. And I'm definitely feeling it today. I'm very sore. I didn't think I did anything that strenuous. Especially since I try to exercise 4-5 time a week. Granted it's light exercise, but still a workout nonetheless. And the movers did 95% of the work. We used discount movers, so we ended up helping a bit. Moving clothes (she has way to many clothes) and breakables and things. The stairs were killing me. I begged her to try to get a bottom floor apartment this time. But the upstairs was cheaper, so she went for that. I guess I can't blame her. She doesn't mind friends, but stairs are not my friend. I was awarded for the help with lunch. Mmmm lemon pepper chicken.

Bloggy Giveaways

2008-07-29T16:00:00.000-07:00

I just heard about this great thing called bloggy carnival. I wanted to get in on the act. Of course I"ll have to start small but small is better than nothing I guess. I'm giving away one coupon good for a free 8.45 oz Cascade Crystal Clear Rinse Agent.

To enter the drawing:

* Leave a comment telling me what you know, if anything, about Lupus

* Deadline August 1

* The winner will be posted in the blog

* Valid email address required

* U.S. only

For more contests, visit my other blog at: Weird News and Other Stuff!

And the winner is.... Ginny! Thanks to all who entered

Fever Subsides, Nasua comes on

2008-07-28T22:18:00.000-07:00

I did run fever one more night, but that wasn't so bad. I'm always thankful when I make a quick recovery or if it doesn't keep me out of commission for longer than a day or two. I feel okay except for an occasional bout of nausea and dizziness. The last time I was in the hospital it was for low blood pressure. It was way to low and couldn't even stand up for a few minutes without almost blacking out. I have no idea why or how it was so low. The doctors never did/could give me an answer. I don't want to repeat that. I will do my on research and find out what are some possible reasons for your blood pressure being low.

Fever Chills

2008-07-25T19:44:00.001-07:00

Last night I went to bed feeling fine. I read a book while waiting to drift off to sleep. I keep a small heater by my bed because I get chilly at night and can't sleep if I'm cold. While reading the heater made this funky, weird noise and stopped blowing. Of course it had conked out. I bundled up and hoped I could go to sleep for the night.

A few hours later I woke up in a sweat. Sweating all over really. I was running fever again. I keep a thermometer near by, since I run fever so often. I checked and it was 99.7 which is a fever for me. My temperature is always lower than 98 degrees normally. I tossed,turned, and sweat all night long. When I awoke, I felt just fine. When this happens it usually is a pattern for a couple days. Oh happy days.:(

Contacts to be colored

2008-07-23T20:33:00.000-07:00

I got a call from my eye doctor. They just wanted to check in and see how the contact they gave me were doing. Without the contact I'm mostly blind in my left eye. Everything looks like colorful blobs and blurs. To top it off I've lost the color also. I now have one brown eye and one light blue eye. It is very noticeable and makes me self-conscious. This is all thanks to Lupus. Saying it's been tough losing my eyesight is the understatement of the year. Anyway they called to say it was time to have the contact colored to match the eye since I was doing well with it. And now I will no longer be this baby's twin. Adios.

Restrictions

2008-07-16T21:28:00.001-07:00

Job hunting can be a bit of a chalenge with Lupus and the various thing associated with it. Anything that requires prolonged standing is pretty much out. A lot of repetitive motion or heavy lifting is also out. Any kind of extreme temperatures, especially the cold, is out. This narrows the field down considerably. And that doesn't even take into account all my restrictions.

Working a full-time job is hard for me. I can do it, but not much anything else that constitutes a life. Working part-time does not provide enough income to make ends meet. And not working is not an option. What's a girl to do? Right now, I am exploring work at home possibilities to supplement my income. I'll keep you posted on the development.

Chronic Fatigue Syndrome

2008-07-15T21:34:00.000-07:00

Yesterday I went out job hunting. I just moved to Texas and wanted to find a summer job to earn some extra cash. The searching lasted maybe 4-5 hours tops. When I got back home out of the heat, I was exhausted. A person in their twenties should be able to go a full day without needing rest, but that's not the case with me. So, I took a nap, only intending on it being and hour or so. It ended up being almost four. This is the main reason my sleep patterns are so out of whack. Some days I have the energy of a normal (non-lupus person) and other days it's almost non-existent. Chronic fatigue is no fun.

2008-07-13T23:56:00.000-07:00

Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells.

There are four types of lupus: discoid, systemic, drug-induced and neonatal lupus. I have been diagnosed with Systemic Lupus. This type lupus is usually more severe and can affect almost any organ of the body. So far the main issues that I have to deal with are Arthritis, Raynaud's Phenomenon and fatigue. Lupus also attacked my left eye and left me mostly blind in it. I struggle with the symptoms from day to day. Some days are better than others. But I keep on keeping on.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=310&zoneid=9

2008-07-12T22:08:00.000-07:00

I guess a good start to this blog is to define what Lupus is exactly. The MedlinePlus Medical Encyclopedia defines it as this:

Systemic lupus erythematosus (SLE) is a chronic, inflammatory autoimmune disorder. It may affect the skin, joints, kidneys, and other organs.

SLE (lupus) is an autoimmune disease. This means there is a problem with the body's normal immune system response. Normally, the immune system helps protect the body from harmful substances. But in patients with an autoimmune disease, the immune system can't tell the difference between harmful substances and healthy ones. The result is an overactive immune response that attacks otherwise healthy cells and tissue. This leads to chronic (long-term) inflammation.

The underlying cause of autoimmune diseases is not fully known. Some researchers think autoimmune diseases occur after infection with an organism that looks like certain proteins in the body. The proteins are later mistaken for the organism and wrongly targeted for attack by the body's immune system.

SLE may be mild or severe enough to cause death.

SLE affects nine times as many women as men. It may occur at any age, but appears most often in people between the ages of 10 and 50 years. African Americans and Asians are affected more often than people from other races.

http://www.nlm.nih.gov/medlineplus/ency/article/000435.htm

Introduction

2008-07-11T21:33:00.000-07:00

Hi, I'm Nia. I'm a 27 year old woman in Texas living with Lupus. This blog is not only to be a journal of my day to day struggles and successes, but also an insight into life with Lupus. Join me as I learn more about my own disease, what helps, what doesn't and how to cope with it. I hope to see you back often and I welcome your thoughts and comments.