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The Lupus Fairy
Probably a million and a half or so...
Tired
Pain in:
Hands
Arms
Knees
Lower back (kidney area)
Stomach
Head
Toes on right foot
Eyes
Right side hip
Dizzy
Nauseous
Weak
Unmotivated
 
 
What's up?: draineddrained
 
 
The Lupus Fairy
08 June 2008 @ 09:48 pm
I am so tired of feeling old and sick...I want to rent a hotel room for a week and just sleep. Nothing more. I'd even go to the hospital for a week just to rest if I was allowed to!

I'm just so...tired... Like to the point where I can't catch my breath again... I woke up this morning, and after about 15 minutes of laying there I couldn't breathe.... Not cool.... I'm done with all of this....
 
 
What's up?: draineddrained
 
 
The Lupus Fairy
... Not for lack of anything to say, I've just been a slacker!

Wow, so since last October, I've gotten a job, I have health insurance, a cafeteria plan, paid time off, and life insurance that the company pays for!

I've gotten all of my bills except my car paid off, and they are talking about actually taking me off most of my meds. I'm already off the prednisone, I was off the plaquenil, but they put me back on it so that I could get off the Cell Cept easier! WOO HOO!

I have a new rheum, that I like a lot. I am back to seeing my original neph, YAYAY!! AND!!! I have an internist! How great is that???

Physically, I am still up and down. Some days are definitely better than others.

The dizziness is coming back, which I hate. My spoons are seriously low lately. It's getting harder and harder to get out of bed everyday. I have actually fantsized about laying in a private hospital room for a week. Just so that I didn't have to do anything else and could (possibly) rest.

My constant headache has been more than just the dull ache I am used to for like two weeks now.

Today, my hands are swollen and achey. I haven't had my hands hurt for a while, which I think is a good sign... Or maybe the fact that they hurt now is a bad sign, I don't know... I hope not!

Oh well, anyway, that's the health update... I'm going to figure out how to build a door on my cube and a cot under my desk so I can nap! lol...
 
 
What's up?: soresore
 
 
The Lupus Fairy
19 October 2007 @ 03:17 am
I haven't slept well all week, I'm having near migraines, my stomach is acidic enough for at least two, someone is punching me in the kidneys, my entire body aches, I'm dizzy, and feel incredibly weak in the legs.

Not to mention, my face is completely broken out. I just want to be done, okay?
 
 
What's up?: nauseatednauseated
 
 
The Lupus Fairy
16 October 2007 @ 06:04 pm
So, I spent most of yesterday vomitting. Didn't wind up getting to sleep until sometime after 4 am so needless to say even though it was almost noon whenI woke up,I'm exhausted. I don't want to do this anymore...
 
 
What's up?: sicksick
 
 
The Lupus Fairy
12 October 2007 @ 01:28 am
Ouch.

The pain is not good during the day, but it is definitely worse at night... Or maybe I just notice it more because I'm trying to sleep.

I have one, ONE percocet left that I didn't give to Miranda when her hip collapsed.

I probably won't take it, and save it for a day when I REALLY need it... Like when my body doesn't move at all....
 
 
What's up?: crappycrappy
 
 
The Lupus Fairy
06 October 2007 @ 01:13 am
It doesn't matter if I try to do things or if I just lie in bed all day, my body wants to beat the shit out of me.

My legs, feet, arms, hands, and rib cage all feel like they are trying to revolt.

I should have used the cane today I'm sure, but it really wouldn't have done anything for the pain I have now, it would have just made walking a little easier at the time. I just get sick of carrying it around. It gets in the way sometimes... And by sometimes, I mean all the time.

I want pain killers that actually do something....

:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(
 
 
What's up?: awakeawake
 
 
The Lupus Fairy
01 October 2007 @ 02:03 pm
Congress enacted legislation in 1977 that established a week-long observance for lupus awareness. Since that time, the Lupus Foundation of America has transformed the entire month of October into National Lupus Awareness Month.

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Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies -- called "auto-antibodies" (auto means 'self') -- cause inflammation, pain and damage in various parts of the body.

Inflammation is considered the primary feature of lupus. Inflammation, which in Latin means "set on fire," is characterized by pain, heat, redness, swelling and loss of function, either on the inside or on the outside of the body (or both).

For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems. Although epidemiological data on lupus is limited, studies suggest that more than 16,000 Americans develop lupus each year.

The Lupus Foundation of America estimates between 1.5 - 2 million Americans have a form of lupus, but the actual number may be higher. More than 90 percent of people with lupus are women. Symptoms and diagnosis occur most often when women are in their child-bearing years, between the ages of 15 and 45.

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The Lupus Fairy
27 September 2007 @ 09:39 pm
My whole everything hurts. I can barely move today. How I'm supposed to walk 3 miles on Saturday, I don't know. I am severely annoyed with being a 27 year old trapped in the body of a 97 year old. I hate pills. I hate sleeping 12-14 hours a day because I can't keep my eyes open. I hate being broken.
 
 
What's up?: depresseddepressed
What's on?: Don't Let Me Be Understood ~ Cyndi Lauper
 
 
The Lupus Fairy
24 September 2007 @ 11:21 pm
It looks like I'll probably be here more often now. I know, yay more whining from me! woo hoo.

Sometimes, I let myself forget I am sick. Which can be a good thing. Having the ability to forget about it is great, actually.

But, when my body decides to put me in my place, and remind me of my limitations with a vengence, I almost wish it never let me forget in the first place.

Waking up out of nowhere unable to move any faster than a 90 year old woman, or feeling like you might be better off in a hospital bed because you feel so sick gets old very quickly.

How is it that I'm not even sure that I've totally lost this one friend, and I still have the rest of my wonderful support system, yet part of me feels alone again in my disease?
 
 
What's up?: soresore
 
 
The Lupus Fairy
30 August 2007 @ 10:18 pm
I have been trying to sleep for an hour now.... No luck, my body hurts too much and is twitching too badly for that.

My hair is starting to fall out again.

My legs are swollen and red again.

I have this cough due to unexplained crap in my throat.

I am breaking out like crazy. My face hurts.

My hands and ankles hurt.

My GERD is working double overtime and a half.

I don't want to take pills anymore.

I just want to whine and cry and be held.

Being sick sucks.
 
 
What's up?: awakeawake
 
 
The Lupus Fairy
09 August 2007 @ 08:49 pm
I am in PAIN!!!!!!!! P.A.I.N. PAIN!! I did SOMETHING to my wrist and I pretty much can't use it or my hand now. It was weird, it just started out kinda achy yesterday afternoon, no biggie, it happens once in a while... It's just gotten worse and worse... I don't know what I could have done, I haven't done anything unusual... But it is not happy... not at all. I'm hoping immobilizing it will help....

My legs are swollen again.... and red... and warm.... which is weird, they never get red and warm... I'm going to see what they do over the weekend, and if it doesn't go away I'm calling the doctor.

owowowowowowowowowowow

Oh yeah, and I'm bleeding from places where I shouldn't be bleeding again. Not serious, but annoying just the same.

I'm going to go cut my arm off now, have a nice night....
 
 
What's up?: lazylazy
 
 
The Lupus Fairy
28 July 2007 @ 11:47 am
"But You Don't LOOK Sick..."

10 Commandments for interacting with the chronically ill

©2006 Susan Williams, PublicHealthAlerg.org

In the realm of chronic illness, one of our more challenging tasks can be gaining support from others. As if finding a knowledgeable and caring doctor wasn’t difficult enough, finding caring and supportive friends to surround ourselves with can be even more difficult. Most people are simply not capable of understanding, unless they have the misfortune of a chronic illness of their own.

How many of us have heard something along the lines of “But you don’t LOOK sick...?” It makes one wonder how a sick person is “supposed” to look. If one were to hobble around on crutches, would their illness suddenly become more believable? Our society understands the visible, physical manifestations of illness, such as a broken bone in a cast or hair loss from chemotherapy. What many fail to grasp is the subtle, invisible manifestations of chronic illness. Symptoms such as pain, severe fatigue, and cognitive impairments are not easily visible to the average observer, which means that sufferers of chronic illness often look “just fine”.

Our society is all about instant results - the mindset that we can just pop a magic pill and all our troubles will go away. When sufferers of a chronic illness do not quickly “get better”, we are often treated as if it were somehow our own fault. We may even be told that we are “hypochondriacs” or that “it’s all in our head”.

Remember when you had the flu? You were exhausted, achy all over, and could hardly get out of bed. But, fortunately, the illness passed and you were back to your old self and usual activities.

Now, imagine if you had never recovered from that flu. Every day, you wake up achingly sore and as tired as if you had not slept at all. Imagine trying to go through your usual activities while feeling this way. Not only do work, school, and regular tasks of daily living become near-impossible, but so do the smaller day-to-day things that so many take for granted, such as simply washing your hair or paying the bills.

It is stressful, it is exhausting, it is depressing... and yet the chronically-ill person continues on in the face of it all.

For those of you who may have, at some point, been the perpetrator of an otherwise well-intentioned comment, please understand that our illness is just as real as that of an amputee or other “visible” illness. To help aid those of you who wonder how to interact with a chronically ill person, allow me to present the Ten Commandments.

1. Thou Shalt Not Imply That We Are Not Truly Ill.
You will not convince us otherwise with remarks such as, “You LOOK good,” or “But you don’t LOOK sick.” Even if you meant them as compliments, we perceive those kind of statements as insults because they imply that you do not believe us.

2. Thou Shalt Not Imply That The Illness Can Be Easily Fixed.
People with chronic illnesses are persistent, if nothing else. We hang on, day after day. We see countless doctors, take numerous medications, do endless research, and continue hoping that the answer is just around the next corner. So please do not insult us by delivering diagnoses, remedies, or comments such as, “Why don’t you just...” or “Have you tried...” or “You should....” If it truly were that simple, I assure you that we would have done it already. We are sick, not stupid.

3. Thou Shalt Not Imply That We Brought This On Ourselves.
We did not choose to become ill, just as we do not choose to stay ill. Simply having a positive attitude is not going to solve our problem. One would never imply that a quadriplegic chose such a trial for themselves, or could get better “if they really wanted to”. Please afford chronically ill patients the same respect.

4. Thou Shalt Not Insult or Argue With Our Limitations or Behaviors.
If people with chronic illnesses push ourselves too hard, we can suffer serious consequences. Most of us have developed coping mechanisms to help us survive, and it is cruel to expect us to do more than we are able. One chronically-ill woman I know was actually told, “I wish I could have the luxury of sleeping all day.” Believe me, we would much rather be out working, playing, spending time with loved ones, participating in normal activities.

“Sleeping all day” is not a luxury for us – it is a critical necessity, one that we must take in order to protect whatever remaining health we have. Perhaps it may help to think of it in terms of being one of the medications we need to take. If you wouldn’t think of denying a diabetic their insulin, then don’t think of denying the sufferer of a chronic illness their critical need, whether it is a mid-day nap, avoidance of certain foods or environmental factors, or something else.

5. Thou Shalt Not Imply That You Can Relate To What We Are Going Through.
Unless you have a chronic illness of your own, you cannot possibly understand just how much suffering is happening. Of course you want to be compassionate and want to relate to people. But when you try to do this by telling a chronically-ill person that you are always tired too, it tends to make the person feel that you are minimizing their suffering. Try saying something more along the lines of, “This must be so hard for you,” or “I can’t imagine what you’re going through.” It really does make a difference to us.

6. Thou Shalt Be Mindful Of Other Family Members.
Chronic illness doesn’t just affect the person who has it, but the whole family as well. The trauma of the illness can evoke feelings of fear, depression, anger, and helplessness in all family members. The balance of family dynamics will most likely change, especially if it is a parent who is ill. The healthy spouse may end up taking on an overwhelming amount of responsibility, and even children will likely be involved in helping care for the ailing family member. Please keep these others in your thoughts as well, and make an effort to direct some special attention to them, without any mention of illness or disability.

Individual family members adjust in different ways and at different paces. All members might benefit from counseling to help handle the stress involved, and each family member also needs to have time to pursue their own individual interests. External support from friends, neighbors, extended family, religious institutions, and support groups may help ease some of the burden.

7. Thou Shalt Acknowledge Our Efforts and Celebrate Even Our Small Successes With Us.
For the chronically ill, any day that we can accomplish a task, no matter how small, is a “good” day! Our lives are often measured in terms of doctor’s visits and lab work, and our “success” measured by a rise in Natural Killer cell counts in our blood, or actually completing an entire load of laundry in just one day. Please do not look at us as if we are joking when we share these celebratory moments with you. Celebrate with us, be happy with us, and do not kill the moment by announcing that you just completed the Ironman Triathlon in record time.

8. Thou Shalt Offer Thy Specific Help.
There are so many ways to help -- the most difficult part is usually getting a chronically-ill person to accept that help. They do not want to feel like a “burden”. If you offer a vague, “Call me if I can help,” the call will probably never come. But if you are sincere, consider extending offers of specific help, such as a ride to a doctor’s appointment, or picking up a few groceries or the dry cleaning. These activities can be done in a way that does not add any extra burden to your own schedule. If you have to go to the grocery store for your own family, it really isn’t much extra work to grab an additional loaf of bread and jug of milk. If you have to swing by the post office, getting an extra roll of stamps or mailing an additional package isn’t much extra effort for you – but it can save a chronically-ill individual a lot of time, energy, and exacerbation of symptoms.

9. Thou Shalt Remember Important Events.
I’m not just talking about birthdays and Christmas. A major doctor’s appointment, lab test, or new medication are all important events to the chronically-ill person. Try to sincerely ask, “How was your appointment? How did the lab test go? How’s your new medication?” The chronically-ill person will appreciate that you remembered, and that you cared enough to ask about it.

10. Thou Shalt Get To Know The Person Behind The Illness.
The illness may be a part of us, but it’s not a part of who we ARE. We want to be known as more than “that sick person”. You may discover that we have a wickedly funny sense of humor, a creative imagination, musical talents, or any number of things that better describe who we are, and what we would rather be remembered for. (It makes for better gift ideas too -- rather than presenting us with yet another self-help book on the power of positive thinking, now you can give us a CD from our favorite singer or movie of our favorite actor instead.)

Most of all, please remember that the chronically-ill person is more than worthy of love, friendship, and support. Most chronically-ill people I know are the toughest nuts I have ever met. Indeed, I have come to believe that a chronic illness is not for wimps – rather, only the toughest of the tough can continually face the struggles of life while battling a debilitating disease. That kind of grit deserves nothing less than pure respect and admiration, even from our toughest critic -- ourselves.
 
 
What's up?: tiredtired
 
 
The Lupus Fairy
25 July 2007 @ 11:28 pm
I am noticing things getting harder again.

It's getting harder to take my pills... Typically, I can take them in one big gulp each time I need to take them.... I am now at the point where I have to take them one at a time, and it takes me a LONG time to get motivated to take them.

It's getting harder to wake up and stay awake, because I am so exhausted all the time.... and at the same time, it's just as hard to fall asleep, even though I am SO TIRED...

It's getting harder to move... Not because I'm in pain or anything, but because a. my body just feels heavy, like it's made of lead, and b. I feel like I have no motivation.... no matter where I am or what I am doing, getting up from wherever I have found myself resting is a chore. I could be at work, fifteen minutes after I should have left, just because I don't feel like moving. When I got home from SPOONS tonight, I found myself contemplating sleeping in my car, because I didn't want to get up. I don't think this is a good sign...

Breathing is difficult sometimes... Even when I'm not doing anything, I get winded for no reason.... Typically when that happens my pulse races... And the two things together make me even more tired....

My head is pounding, making it impossible to sleep... I just want to lay in bed for a week... Maybe THAT'S why I've been having the funky hospital dreams? What do you do in the hospital? Lie in bed while people wait on you hand and foot! No wonder those dreams have been so peaceful lately!!!
 
 
What's up?: exanimateexanimate
 
 
The Lupus Fairy
17 July 2007 @ 10:55 am
If I was anymore tired, I would be passed out on the floor here at work. It's been a few months since I have had fatigue like this... People keep saying how tired they are, and "I know just how you feel!"  I sometimes just want to say, "Um, no. You don't."  But, I don't. Sometimes, it makes people feel better if they think they understand... So I let them.

At least I can breathe  am not out of breath today... This sinus crap, cold, allergies, infection, whatever, is REALLY getting on my nerves! :D My ribcage still hurts when I breathe and especially when I cough, but not as bad as it was last night, so that's a plus! :)

I want to sleeeeeeeeeeeeeeeeeeeeeeeeeep!!!!

I had another hospital dream last night. It was another one where being in the hospital was peaceful as opposed to scary, and I was really okay with being there... I wonder what those dreams mean? It's just really very odd to me....

 
 
What's up?: exhaustedexhausted
 
 
The Lupus Fairy
16 July 2007 @ 02:33 pm
There is a definite difference between tired and fatigue... Fatigue is when you feel like the only time you will get enough rest is when you are dead.

I am totally out of spoons... I can't breathe again, suddenly... Which always sucks.... Feels like I've been running miles when all I have been doing is sitting...I have slight tremors today, which is nice compared to the past few days when my whole body was shaking uncontrollably... I have a headache again, and I think I have allergies or something because my sinuses are going nuts. I'm also starting to get dizzy again... yay... I had to turn off the air conditioning because I was so cold earlier... Funny, it's almost 100 degrees out.... Oh well...

There is my whine for right now. I don't feel like working. I want to go home and go to sleep for a few days....
 
 
What's up?: draineddrained
 
 
The Lupus Fairy
15 July 2007 @ 09:41 pm
Why do my symptoms still have so much power to scare the crap out of me? It's not like these symptoms are new anymore.... I've had them quite frequently over the past two years, so what's the deal? Why do I still get so afraid that certain symptoms mean my Lupus is killing me, even though somewhere in my mind, I KNOW it probably isn't true? Why do images of hospital beds and IVs and nurses 24/7 keep popping into my head? I should have accepted this as normal by now.... Well, I have in some parts of my mind I guess... But, at the same time, I haven't... How does that work?
 
 
The Lupus Fairy
11 July 2007 @ 08:15 pm
I wish I could sleep... Even more, I wish I could just sleep until I felt better...Food is not my friend.... Not at all...I hate being sick... Make it go away.... PLEASE????
 
 
What's up?: blahblah
 
 
The Lupus Fairy
10 July 2007 @ 10:05 pm
I don't want to play the Lupus game anymore! Stop the ride! I want to get off!!!!!!!
 
 
What's up?: sicksick
 
 
The Lupus Fairy
10 July 2007 @ 07:35 pm
I feel like death. I think I have a cold. I've felt faint and nauseous all day. My throat hurts and I am so stuffed up that my sinuses are aching. I was shaky again today.... I can't help but wonder if with all this shaking that I have been doing for the past couple months... Well, couple years, but it seems to be getting more frequent.... If maybe I have the beginning of Parkinson's? I doubt that I do, but the thought does cross my mind every now and then...

I just want to curl up and go to sleep and not wake up until I feel better, and there's a cure for Lupus. I hate this. Make it go away.
 
 
What's up?: crappycrappy
 
 
The Lupus Fairy
My head is pounding, I'm nauseous and I'm dizzy. I'm finding that I am getting winded easily, which is odd for me... I have great lung capacity... I AM a singer after all.... My heartrate has been high and I have been REALLY tired.... My BP has been good though.... Little things....

I still just feel like begging someone to make my Lupus go away.... Anyone have a magic wand?
 
 
What's up?: blahblah
 
 
The Lupus Fairy
05 July 2007 @ 08:31 pm
We're coming up on the two year mark since my diagnosis and I am tired. Tired of stressing out because of this disease. Tired of "taking it easy". Tired of feeling three times my age. Tired of feeling like everything is a struggle... even if it's not an all the time thing, it happens too often. Tired of feeling sick. Tired of being in pain. Tired of never knowing what's going to happen. Tired of worrying that something bad is going to happen and worrying about how I'm going to take care of it because I have no coverage. I'm just tired. I feel like crying and whining and screaming but I don't have the energy. :(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(
 
 
What's up?: blahblah
 
 
The Lupus Fairy
03 July 2007 @ 03:00 pm
Okay, so typically when I have a headache and dizziness and numbness in my hands my bp is low.... Not now though.... my bp is fine.... Very odd.

My mid-section really hurts today between cramps and my kidneys, everything in that section, including my hips, just hurt... Not cool. Oh well.

Enough bitching for now!
 
 
What's up?: soresore
 
 
The Lupus Fairy
02 July 2007 @ 10:16 pm
Dizzy
Pain all over
Nausea
Headache
Cramps
Kidney pain
Shaking
Hot and cold flashes
Swelling

Other than that I'm GREAT!!! :D
 
 
What's up?: tiredtired
 
 
The Lupus Fairy
29 June 2007 @ 12:11 pm
I am so hungry today... It's ridiculous! I feel like such a pig! STOP EATING JILLIAN!! STOP EATING!!!!!
 
 
What's up?: hungryhungry
 
 
The Lupus Fairy
27 June 2007 @ 10:37 pm
Why does my body hurt so much more at night when I'm NOT moving it and TRYING to relax???
 
 
What's up?: soresore
 
 
The Lupus Fairy
27 June 2007 @ 11:53 am
I hurt and I'm dizzy and I'm swollen.... boooooooooooo
 
 
What's up?: blahblah
 
 
The Lupus Fairy
26 June 2007 @ 03:44 pm
I want to whine and cry and curl up in a ball and sleep until I feel good again... :( Too bad I actually have to LIVE my life, and want to have as normal a life as possible....
 
 
What's up?: crappycrappy
 
 
The Lupus Fairy
25 June 2007 @ 03:43 pm
I need to make enough money so that days like today I can stay home.

My whole body aches... Not so much that I need a cane, but enough to be annoying. I'm hot and cold at the same time, and while my temperature is elevated for me, I don't have a fever... I'm only at 98.6. My bp is slowly dropping, but it's still in good range. I'm dizzy and nauseous, and I hate the heat!

Okay done whining for now...
 
 
What's up?: sicksick
 
 
The Lupus Fairy
20 June 2007 @ 03:24 pm
Can I just whine a little more today??? PLEASE??? Maybe that will make it go away! Yeah, right... I wish... I think I can deal with pain days a whole lot better than I deal with sick days... :P I can even deal with fatigue days better than sick days. I am such a wimp when it comes to this Lupus shit. It's a wonder any of you put up with me! Sometimes, like today, I feel like whining so much that even I don't want to put up with me.

BLAH!!!!!!!!!!!
 
 
What's up?: blahblah
 
 
The Lupus Fairy
20 June 2007 @ 09:47 am
The Lupus Truck backed over me again. I feel even worse today. I'm debating whether I am going to stay at work or not... I really want to make it through the day, but I also feel like shit.... Oh well, we'll see. I hope this isn't going to turn into a trend... I was enjoying feeling normal for once in two years! Though, I was looking back through journal entries for my book and last April I was feeling pretty good, too... It didn't last as long as it did this year, but maybe that's my trend... Maybe spring is the best time of year for me? Too bad it can't be spring forever!

I want a new body, okay?
 
 
What's up?: sicksick
 
 
The Lupus Fairy
19 June 2007 @ 09:36 pm
I'll never get used to this. I was feeling so good for so long, now I just want it all to stop. I'm seriously over feeling like shit out of the blue.... And this isn't just like general feeling like shit, this is like begging anyone who will listen to put you out of your misery feeling like shit. It was 87 degrees today and I was (and still am) freezing. The room is spinning again, I feel like I'm going to vomit, but it won't come out, my head and the muscles in my arms are throbbing, my legs are covered in bruises again, the rest of my skin feels bruised, I feel pale, but not quite like I'm going to pass out.... Just like I'm going to fall if I stand up. I need a real hug and I just want to cry.

I'm ready to wake up now.
 
 
What's up?: sicksick
 
 
The Lupus Fairy
14 June 2007 @ 10:21 pm
I hate Lupus.

That's really all I need to say, isn't it?

I think I'm just going to go cry now.

Fuck you Lupus, fuck you...
 
 
What's up?: sicksick
 
 
The Lupus Fairy
13 June 2007 @ 08:56 am
So, I think my abundance of energy is catching up with me... This isn't good because I need to be able to keep going so that I can actually lose some weight... It's not like I'm eating too much right now or anything... I just need to get it off and then I'll be able to keep it off, I am sure...

The shaking thing is almost a daily occurrance now... It goes away but it keeps coming back... Not cool...

I keep getting light headed too... It's not as bad as last year, but it's enough to be annoying.

My left leg hurts today... I don't know why... And my stomach is bothering me... Oh well... nothing new... lol... I just hope my lupus doesn't decide to be a bitch for my date on Saturday!
 
 
What's up?: tiredtired
 
 
The Lupus Fairy
11 June 2007 @ 10:03 pm
The whole right side of my face hurts. It actually feels like someone popped me in the cheekbone right underneath my temple because my whole cheekbone hurts all the way to my ear, and then up to about the middle of my head. Then my mandible kind of hurts too but it's more stiff than anything... The weirdest part is, the left side of my face feels fine, so it REALLY feels like someone punched me one... Weird... At least the shaking has stopped for now....
 
 
What's up?: soresore
 
 
The Lupus Fairy
29 May 2007 @ 08:27 pm
Today, my diet has consisted of crackers, plain bread, chicken noodle soup, and rolaids... Lots of Rolaids. Nothing is helping, and if I throw up one more time I'm going to scream!

My head is killing me, my body aches.... Oh yeah, I have Lupus.

Lupus sucks.
 
 
What's up?: sicksick
 
 
The Lupus Fairy
Well, I kind of thought I was going to have a lot more time feeling good... Since I was feeling SO good... Not so much... I left band practice yesterday starting to feel nauseous and dizzy. By the time I got home it was bad. Like to the point if I had left then, I wouldn't have been able to drive.

My stomach and my kidneys decided to beat me up all night last night, so I got no sleep. So today, I've had the worst headache you can have before it becomes a migraine, and I've been getting sick all day long. Hot weather doesn't help that at all btw... Incase you were wondering.

I hope this vomitting thing is gone by tomorrow, I really don't want to be getting sick at work...

My legs have been swelling recently, too... Typically when they swell I just have to stay off my feet for a while and it goes down... Not so much right now... I think I'm going to blame the heat unless it gets worse...

Did I mention I hate Lupus?
 
 
What's up?: sicksick
 
 
The Lupus Fairy
24 May 2007 @ 01:14 pm
Why has it been so long? You may ask... Because I have been feeling relatively normal lately! YAYAYAYAY!!!

I've had some shakiness over the past couple weeks, but really, I have felt like a normal person. Apparently, my labs look great, except my vitamin D is low and my albumin is a little low... Which is a little scary, but I'm not as worried about it as I was at first. I'm still a little apprehensive about not having coverage yet at work... Hopefully I will have it by July... Speaking of which I have to talk to my boss about that today, see if she knows anything.

I've been kind of swollen for the past week or so... And for the past couple days I have been kind of light headed... Not NEARLY as bad as last year, but enough to make me stop every once in a while to take notice. And it makes me a little nauseous, too... So, of course I wonder if I need to eat something... So I do and it doesn't help... So, the diet has been crap for the past two weeks... I really need to get back on that... Plus, as good as I was being I gained weight, so I'm back up to 310, which is pretty depressing...

Gastric Bypass surgery! THAT'S THE TICKET! Okay, so I need money for that, but big deal! I know I could keep it off, if I could just get it off to begin with!

Blah.

So anyway, that's my health update for May... lol... Hopefully, this lightheaded stuff is just a fluke and will go away pretty quickly... I was liking this feeling like a regular person stuff... Hopefully it will come back all the way! :)
 
 
What's up?: blahblah
 
 
The Lupus Fairy
09 April 2007 @ 06:55 am
I think my days of mountain driving have come to a close. I believe that it was the twisty turny roads that made me feel so terrible this weekend. Which sucks, because I love the mountains. I also missed half of the party after the wedding. I had to have someone cut my food because I was shaking so terribly I couldn't use my fork and knife. Then after all that I started shaking more, so eating became virtually impossible... Too bad, it was a nice dinner. Though, it was fun to laugh at the drunk people. Especially Ron, who called his son, his brother. His daughter's friend by his daughter's name. And couldn't quite grasp the concept of Scotts being offended by being called English. According to my mother, I picked up a british accent. Not that I am surprised. I pick up accents pretty easily. But no one else said anything... LOL Anyway, I got home about 7:00 last night and was asleep before 8:00 which was nice... Though, I woke up at 6:30 this morning... Not as nice... Oh well, what can you do?
 
 
What's up?: awakeawake
 
 
The Lupus Fairy
14 March 2007 @ 12:20 pm
Yesterday was my nephrology appointment and today was my rheumatology appointment.

At the nephrologist my bp was 179/92 or some crap like that when I got to the dr. I told her about my tachycardic episodes and that I get dizzy right about 2:00p and when I'm really tired, and about my shortness of breath... She said the shortness of breath was more than likely from my heart speeding up. She ordered that my Thyroid be checked again... Which may mean I can come down on the synthroid! YAY! But, Apparently, it could also be my nasal spray... Who freakin' knows... Hopefully soon my labs will be in.

She upped my lisinopril to 40 mgs a day from 10... Yay... This should mean that I should be able to come down on the prednisone... Hopefully.

Anyway, she said my rash was from Lupus. She said the excessive bruising is probably because of the prednisone.. wee.

So today, according to the rheumatologist, my rash (which looks like I biffed my chin on the pavement) is weird. Yay. Apparently, I also have symptoms of polycystic ovaries, so he's going to make a note for my new doctor to check that out. I'm spilling a gram of protein again, which is up from the last time. He doesn't think the CellCept is helping me and my pain isn't from Lupus it's all from the fibro... Which is why the high dose steroids don't help it. He didn't change any of my meds, but said something about changing me from CellCept to Cyclosporin?? I have been trying to look it up and the fisrt thing that came up said it was Cytoxan. Cytoxan cyclosporine (cyclosporin A) to be exact. But, I asked him if that was what it was, and he said no.... So I have to keep looking... But I'm guessing it's stronger than the CellCept... Dude... I don't want to go on Cytoxan...

Hopefully, my BP won't go too low again now that I'm back on 40 of lisinopril... Because that is what will get me off the prednisone. Or at least, the high doses....

I guess I'm in anxiety mode or something because now I'm freaking out about that, as well as the fact that my nephrologist told me that when I get my insurance I have to switch doctors... I am so scared to have a totally new medical team... It's not even funny... Seriously, I have been crying and almost hyperventilating... And just TOTALLY freaking out... I don't know why... It's so stupid.

And it's mainly the fact that my doctors ARE good. And I have heard everyone's horror stories, and then my first doctor in all this mess who almost killed me.....

I don't know... I'm just a wreck right now... Which sucks because I am at work....


UGH!

What else can be wrong with me???
 
 
The Lupus Fairy
13 March 2007 @ 12:39 pm
I can't breathe... Again... I was just sitting here and I was fine and all of a sudden I was out of breath... My HR is about 84 so it is within range... I guess... And my BP is 139/80... So not too bad...

All I know is that I am dizzy and feel like I've been running when I haven't. THIS is annoying.

Also the tired thing is starting to get on my nerves... I'm winding up at work later and later everyday... I'm not late TO work but I JUST made it under the wire this morning... And I hate that.

I'm cold today, too... It's 70 freakin' degrees outside and I am FREEZING!!! Not cool!!! (Or very cool depending how you think, I guess)

I don't feel sick, I just feel... tired.... Not anymore or less tired than yesterday though... So, that's a plus!!

Day 2 and the diet is going well! Yesterday I slipped a little, but really, not too bad since I am still supposed to eat some carbs...

Today is much better... Partially because I am not taking lunch today so that I can leave early... So, my breakfast AND lunch consisted of Low Carb slim fast... yum :P Could be worse, though!

Oh and I have been snacking on trail mix... :D

Oh joy. Oh rapture.
 
 
The Lupus Fairy
12 March 2007 @ 02:49 pm
Okay, so my rapid heart rate thing could be POTS, Orthostatic Hypotension, Ventricular Tachicardia, Supraventricular Tachycardia, or nothing.

BUT! The Cardiologist said I DIDN'T have POTS, but my tilt table test showed that my heart rate does speed up when I stand... The other thing is, my heart rate doesn't always speed up when I'm standing, and I don't always have low blood pressure when it happens and I don't always have low blood pressure when I am dizzy... So Orthostatic Hypotension, even though that's what he told me I more than likely had, makes no sense either.

If I had Ventricular or Supraventricular Tachycardia, don't you think the EKGS that I have had would have shown them SOMETHING???

So, maybe I'm just a freak?

I don't know...
 
 
The Lupus Fairy
12 March 2007 @ 12:24 pm
I think I may be flaring.

I woke up yesterday with the strangest rash on my face it's on my chin and my right cheek, and it hurts like it's been burned. And the skin feels... I don't know, tough... It's kind of weird. Make up is partially covering it up... But, I don't think it's doing a great job.

I am, however, half tempted to wash my make up off my face before I go to the dr. tomorrow.... But, knowing me, I will go into the bathroom here to wash it off and get it all over myself... So I may just tell her about it and wash it off there to show her... And then I just won't put on my make up before my appointment for the rheumy on Wed. morning! I'll put it on in the car before I leave there or something I guess... Because I NEVER have a rash when I go to the dr. So, I want them to see that I actually DO get rashes... Which I THINK would mean that my Lupus isn't just in my kidneys... But I can't be sure...

I also have bruises all over my body again. It is BEAUTIFUL outside and I am wearing long sleeves so that no one asks "what happened?" If I say, "I don't know." no one would believe me because that is how beat up I look. They are all over my arms and legs and sides and back... Not on the front of my torso at all though... Strange...

Since last night I have been overheated. HUGE CHANGE from Saturday and Friday when I was FREEZING!

My back and the back of my legs are sore.

And tired. Always tired. No matter if I sleep or not. I'm tired. And I'm getting to the dream state every night, so I am getting the right kind of sleep... I don't know. Lupus sucks.

I need my glasses all the time now. Which is weird, because I rarely needed them before... My prescription hasn't changed, I just need them more often.

OH! I don't think I am allergic to asprin I took an Excedrin Migraine yesterday because my head was KILLING ME! And I figured hives would be a small price to pay for keeping my head from exploding... That stuff works great by the way!!! Almost as good as Advil Liquigels! It's going to be my new best friend, I'm sure! Sorry, Ron and Miranda. LOLOLOLOLOLOLOLOLOLOLOLOL!!!!!!!!!!

Anyway, Miranda and I are starting the diet thing... I have to do SOMETHING. So, I got a whole bunch of granola, and dried fruit and nuts and stuff to snack on at work so that I don't eat the chocolate and junk food that is always around this place. I am cutting out pasta and potatoes and only eating whole grain bread. I will eat rice, but I don't typically like rice a lot, so that will be rare. I will treat myself to my weekly starbucks. And if my parents decide they want to eat something I'm not eating, I can eat my bowl of shredded wheat and be happy. I got some low carb slimfast shakes that I can drink with my pills in the morning. I also got some of that protein water from Special K... Just because I thought I'd try it... I have allowed myself enough money each week to get a salad from Wendy's for my lunches during the week. And I got some fiber supplement, because that is supposed to fill you up. And since I'm still on 40mgs of pred, I NEED IT!!

I am going to TRY and do my abs tape everyday after work... And if I can do that, and start seeing some improvement then I will add the arms... and then after a while I will add the legs... And if that is too much, but the abs thing isn't, I'll do abs one day, arms one day, and legs the next. Or something.



Okay, enough avoiding work for now... LOL!
 
 
The Lupus Fairy
26 February 2007 @ 12:24 pm
... But I WANT to be. Even though I can't breathe, nauseous, dizzy, and shivering. Someone stabbed me in between my shoulder blades this morning and is still twisting the knife. ("Et tu Brute?")There is a clamp on my head with three sharp screws digging into my brain as the clamp tightens excruciatingly slower with each torturous movement. Occasionally, someone decides to swing a bat at my kidneys. The tremors in my hands and arms come in waves. I'm still pulling clumps of hair out of my head, and I'm doubting that I will ever get enough sleep in my lifetime. I'm so cold.

I feel like I'm in constant turmoil, physically. Like I'm riding a wave with no surf board... And I can't swim. But, then the water calms, and I can breathe again...
 
 
The Lupus Fairy
21 February 2007 @ 02:24 pm
I can't breathe today. Not like I CAN'T breathe, but I feel very out of breath. And I'm not doing anything....

I'm not sure if this is always the case or not, but I think I notice that I have the out-of-breathness (Shut up! It is too a word! Just look in your Jillian to English Dictionary!) when I am overly tired.

I'm really tired of taking pills. And eating. And drinking. Anything that goes into my mouth and down my throat really... Someone just hook me up to a constant IV and pump me full of whatever I need inorder to survive, and I'll be fine. What do you mean it will be hard to drive with an IV in my arm? Shut up, I'll be fine! LOL!

Every once in a while my eyes go blurry... It's kind of weird because it feels like when you MAKE your eyes go blurry as opposed to when they go blurry because you need your glasses... (Which I am wearing in case you wondered.)

I don't feel too bad today. Just really tired. Plus you know, the whole breathing thing. If I get any more breathy I will be freakin' Marilyn Monroe!

Ever notice how I come here and just kind of "brain dump"? Yeah, I noticed that, too. I really feel that this journal has a completely different feel than my other journal. I feel like there I actually write, and sort of think about what I am going to say. Here I just kinda throw up on the page. (Nice imagery, huh?)

Anyway. I think I want Brittany's "Broken Spoon" pic for this journal! I need to get rid of some of these damn butterflies! I never use them! Maybe I'll play with the camera this weekend!

It's going to be a LOOOOOOOOOOOOOOOOONG day......

zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
 
 
The Lupus Fairy
20 February 2007 @ 02:34 pm
I also was going to add that I have needed my glasses a lot more lately.... It's really weird how my eyes work now. Sometimes I don't need my glasses at all, sometimes I only kind of need them, but I can do without them, and then some days, I can't do anything without them!

I. Am. Cold. It's REALLY nice outside, but I am FREEZING!!!

BTW, Lupus? Hate it.
 
 
The Lupus Fairy
20 February 2007 @ 12:52 pm
If I didn't WANT to be here so much, I would be curled up in bed asleep, or on the couch watching TV.... It's not a great day. It's not a TERRIBLE day, but it's not a great day.

Every once in a while I'll see spots... Which typically only happens when I feel like I'm going to pass out... But, I don't feel like I'm going to pass out. I feel SLIGHTLY light headed, but nothing huge... It's probably from my headache, but that isn't normal for me... So, I don't know.

In about 5 or 10 minutes, I am going to go and have lunch. Maybe food will help, but I doubt it. I feel nauseous, and there's a place in my abdomen that is hard like I tight muscle, and kind of hurts...

I've called the doc twice today about my cellcept shit... When I go to lunch, I'm calling again... and calling the renal pharmie... maybe he can help me out with what I should be doing... I also need to set up an appointment with him so I can get my CellCept again... WOO!

Could someone please give me a body and a brain that work? That would be lovely, thanks.
 
 
The Lupus Fairy
14 February 2007 @ 11:13 pm
Shit. I think I have been taking too much Cellcept.... Or I've been taking the right amount and saying it wrong.... I'm so confused...

See, I THINK I'm supposed to be taking 1gram of Cellcept 3x's a day... I started out taking 1.5 grams 2x's a day... Then we spread it out to 3x's but kept the dosage the same... Except, I have been taking 1.5 grams 3x's a day... Unless it changed to that, and I just didn't write it down???

Shit. Shit. Shit.

And of course Cellcept is the drug that can promote cancer. And who knows how long I have been screwing up for if I am screwing up?

OH MY GOD! What the hell is happening to me? I want to move out of this house and be on my own, right? How am I going to do that if I can't even manage my own pills without potentially overdosing???

Ok. Now, I am freaking the fuck out. Not because I am potentially over medicated as much as I have no idea what's going on! What's wrong with my brain? Don't tell me I can't even take care of myself anymore!!! Shit.
 
 
The Lupus Fairy
13 February 2007 @ 11:48 am
So, by about 2:30-3:00 yesterday I was having tremors again... They were gone when I woke up from my nap, but it's really weird... I've had tremors before, but they didn't seem as bad as these have been the past couple days.

I don't understand why I am so dizzy lately... Like since Saturday... Because my BP is fine... Not too high, not too low... Infact today, it's almost perfect 120/80... I seriously don't get it.

I've been slacking on my word of the day thing on myspace... I guess because I've been kinda spacey... Not to the point of not being able to function, but to the point where focusing on anything creative doesn't work... LOL!

I notice that when my hands and arms hurt, my veins seem to stick out more, and seem to be darker blue... Weird, huh?

I've been massaging my hands, since they hurt, and they pop... And don't stop... You'd think after a while they would stop popping... I'm also getting these little itchy bumps on my hands... I know Miranda gets them when she's starting to go into a flare... But, she typically gets more than the few that I have...

I think someone comes into my room and punches me in the arms at night... This is what I have decided... The same person also comes in and takes one of those hand drills and tries to dig it into my brain.... Dude, not cool.
 
 
The Lupus Fairy
12 February 2007 @ 12:29 pm
I really don't want to take any time off this week. I want to prove that I can do this. I don't want to have to deal with waiting on the government to decide if I am allowed to live or not. We have a three day weekend coming up. Seriously, I don't want to take the time off. I want to keep this job. I love this job. Even if our politcal views clash... It's actually really funny being one of the only Democrats in a totally Republican office. It's fun to watch them back track on matters of healthcare and stuff... Because they see the things I go through, and when I tell them: "Look, if it wasn't for this or that I wouldn't be alive." So, then I get:"Oh well, you're the exception to the rule." LOL! When the reality is, there are A LOT of people like me out there...

ANYWAY, I'm still on trial basis here... Yes, I do think that if they were planning to get rid of me they would have by now... BUT, you never know... I want the job, I NEED the insurance...

But, I'm tired, dizzy, nauseous, and a little weak on my feet... My hands and legs are sore and stiff, respectively.. I have a headache... My kidneys hurt... But, if I can't get through a day sitting at a desk doing nothing... What the hell good am I? I may as well be dead, right? Well, you know what I mean...

I've checked my BP and it isn't bad... a LITTLE high, actually... But still in range 130/85.

That whole clingy feeling seems to be taking over my entire exsistance. I want to curl up in a ball and be held until I fall asleep.

Yeah. Right. Funny.

I just want it to stop!!!!!!!!


Whine whine whine whine whine.... :'(:'(:'(


*goes to find Harold*