Monday, November 29, 2010

Holiday Cancelations

The holiday season has to be one of the toughest times of the year for me. Now, I tend not to be the type of person who gets really depressed during this season. Instead I run into too many social engagements/activities and not enough spoons. Or just not enough spoons in general. One of the hardest things to do is to say: “I’m sorry but I really can’t attend your holiday event I said I could a week ago.” Canceling at the last minute sucks but sometimes I have to do it.

Please- Do not take it personally. I’m not canceling on you because I don’t like you or don’t want to be around you. I am canceling because I am out of spoons and really would not be any fun at the engagement even if I did come.

Please- Do not give me a hard time. I feel bad enough already having to cancel on you. It makes me feel even worse if you give me the ringer about it. I know I don’t look sick and I don’t act sick most of the time. But I really am and I really do need to stay home. No crap necessary.

Please- Understand I am dealing with something where how well I am feeling can change from one minute to the next. I may have been feeling “just fine” when you saw me in the morning but now I feel “like crap” in the afternoon. Things change quickly and sometimes I can take a nosedive in a matter of minutes.

Please- Understand if I do manage to show up for a little while and have to leave early it’s not because the social engagement sucks. I am leaving because I am crashing and need to get home. You really do not want me crashing at your social engagement… believe me!

Please- Do not ask me a million questions about things the next day. I realize I wasn’t there last night but I really don’t want to elaborate on “I’m sorry but I can’t make it (I’m not feeling well.)” What matters is I’m back in action now and I am able to function again. Not what happened last night.

The holidays can be a wonderful time. I hope to have lots of spoons to go to holiday engagements/activities but if I don’t… please understand. Sometimes I just can’t come. But have a wonderful time without me and I will be there in spirit.

Thursday, November 25, 2010

Thankful

Seeing as how it is thanksgiving today, I would like to list all of the things I am thankful for. Sometimes it’s good to just sit back and count my blessings. Feel free to do the same!

1. To be alive
2. To have a warm house to live in
3. Safe food to eat
4. Understanding friends
5. A mom and a dad under the same roof
6. To be able to pursue my passions in life
7. Kleenex
8. Warm fuzzy socks
9. My own room
10. 15 crazy chickens
11. A horse who is patient and quiet with me
12. My very own laptop
13. Fred….
14. Ugly garden gnomes
15. A cup of hot tea
16. My lovely sewing machine
17. Industrial strength appliances
18. Plaquenil/MTX/Naproxyn – think about it this way, they suck but they’re necessary for living…
19. Betty Boop PJ’s
20. Electric blankets

Happy Thanksgiving!

Friday, November 19, 2010

How I Am Doing :)

This past couple of weeks has been a roller coaster ride for me. I have been the hostess of a nasty bug. For most of the week I puked my guts out and just felt awful. Today was the first “normal sick” day I have had in quite a while. Feeling my normal level of crumminess is a welcome relief. Sounds odd but it’s so true. Having lupus on top of some weird bug is just miserable. But I want to write about how good I felt today. Since there was quite a notable difference between today and the rest of the week.

First thing I noticed was how good my joints were feeling. Just the normal level of achyness. Not feeling like a tractor-trailer ran me over. I was able to bend and play piano with very minimal levels of pain. Splendid doesn’t even cover it.

Freedom isn’t really the right word to use here… but the chains of illness felt lighter today. I didn’t feel nearly as bogged down and foggy. Which was AWESOME!

All week the mouth sores have been horrid. Actually, I started crying while attempting to eat chunky peanut butter. Sores all over the roof of my mouth, Ow! Today I only had one to deal with. At least I could chew where there wasn’t a sore today. Much appreciated.

Not puking out guts is definitely a big bonus. I’ve had enough of that for a year now. Holding food down is always a welcomed and a wonderful thing. Toast does get tiring after awhile… I’ve had plenty of toast this week for sure! But I can’t complain too much about toast ‘cause I had Udi’s bread. Yum!

One of the funny things about having lupus is because I already feel sick, having another sickness on top of it just adds to the sickness feeling. Like I already feel icky but now I feel pickley ickly… hard to explain. Doesn’t make things any easier. I’m just so used to dealing with feeling yucky, acting “normal” becomes more challenging but still doable. I just can’t act “normal” for as long.

Thankfully I was able to have the week off from some of my accompanying duties at school (Thank you T :D). I needed the sleep! Slept in every single day (except for today…) I generally get up at 6 a.m. sharp. Start out the day bright, early and a bit cranky. Hee hee hee… Generally 400 mg of Plaquenil among other things tends to cheer me up. Sure did today anyways!

Not going to lie. Today was a pretty dang good day for me. I hope these days continue to come and treat me well. Hopefully this is the last of the crappy bug thing. Having a small spring in my step is excellent! Hope you all have a good weekend! I sure am going to try to. :D

Tuesday, November 16, 2010

A “Sick” Person’s Arsenal

With the help of these “weapons” I keep my “mass destruction” at bay for the most part (lupus or any other type of destruction):

Gloves- A good way to prevent a Raynaud’s attack is to wear gloves. So I adorn my hands with colorful gloves during the more chilling months of the year.

Imodium- Medications don’t always agree. Pretty much always have a couple doses on me. Never know when problems might arise.

A Technicolor Prayer Shawl- Currently curled up in mine as I type. Not only is it comforting, it is also light and warm.

A Smile- Most everything is better with a smile. Even the darkest days. As long as I remembered to brush my teeth that is…

Sunscreen- Nothing is worse than breaking out in rashes after only a few minutes in the sun. Worse than a bad tan job in my opinion. Having protection is key to keeping the rashes at bay.

Concealer- to cover up said rashes above when I forget about protection.

Sweats and Other Baggy Clothing- Sometimes wearing clingy clothing is more than my body can handle. Or my hands are too stiff to mess with the zipper on a pair of jeans anyways. Sweats are perfect for those days.

Toast- Easy on the stomach and good with all the pills. I eat lots of toast.

Fire Extinguisher- It’s amazing what brain fog + unlucky appliance equals. In my case it is generally a fire. Whenever I am foggy and cook, my sister stands guard with the fire extinguisher.

Electric Blanket- Gentle heat is very soothing on achy joints. Plus I don’t have the weight of many quilts on me, which can feel not so great.

Memory Foam Mattress Pad- Helps to quiet the 1 billion achy pressure points on my body when I lay down. Well worth the price at Costco.

Tissues- Meltdowns happen. Some people prefer hankies but Kleenex works just fine for my purposes.

Positive Attitude- No matter how sucky life may be. There’s always a silver lining. No matter how thin it might be. And yes, linings can be pretty thing sometimes. But they are there!

My weapons don’t require bullets. Instead these weapons fight a battle from within. I am waiting for the day of armistice. Until the day it comes, I will have to continue to deploy my arsenal.

I have a question for readers, is there any particular lupus subject matter you would like me to write about in one of my upcoming blog posts? Wishing you all lots of spoons!

Sunday, November 14, 2010

Saying "No"

“Yes” is an easy word to say. People say it all the time. Rarely do I hear “no.” In American culture, the word “no” seems to be shunned upon. Nobody wants to say the word. Not even I. Thanks to lupus, I have learned how to say “no” and not feel guilty about it. I had to, or else I would have dug myself into a hole so many people dig themselves into. Always over-stressed, over-booked and under-rested.

Don’t get me wrong here. The word “yes” should be used and used with love. But I have had to learn to budget my use of “yeses” just like I budget my spoons. A fair amount of the time I have to flat out say “no” to things I really do want to do. Things I would have been able to do if I didn’t have lupus and was a normal teen again.

For as many “no’s” as I say, I think about how well I will use my spoons for all of the “yeses” I have said.

Thursday, November 11, 2010

Getting It

Some people claim to understand what people with lupus (or another auto-immune disorder) are going through. The truth is most of them don’t. You have to walk a mile (or 5) in my shoes to truly understand. Honestly, the people who say “I really don’t understand” are much easier for me to deal with than the people who say, “Oh, yeah, I get it, you feel tired, well I’m tired too.” Those people make me want to shoot myself! First of all, it’s not tired. It’s bone deep fatigue not even sleep can fix most days. Second, the individual really doesn’t “get it.” Especially if they have never had to deal with personal illness before (I’m not talking about a cold here people….)

Not many of my family members “get it.” Now, they may have read information about lupus online or even read a book from the library but it’s only ink on paper. They might understand what it does or how it affects me but they don’t “get it.” About six months back my brother; mother and I were having dinner. I was telling my brother about how I had lupus and the spoon theory. He proceeded to say to me “The spoon theory is BS and honestly you’re making this out to be bigger than it actually is. It’s just in your head. Anyone can have all the energy they want to and you just aren’t letting yourself have energy.” Not a good move on his part (I of course went storming off because I was really offended.) All of the people I have ran into who “get it” just do. No explanation needed, no clarification necessary, it just clicks. It’s pretty easy for me to tell who does and doesn’t “get it.”

Other members of my family are in denial or do not want to understand. My father would be a prime example of this. One afternoon I found an autoimmune support group in the city. Granted it was almost an hour away if I got stuck in traffic but there would be other people like me there. Considering I have yet to meet another teen with lupus, I was pretty pumped about the support group. I asked my father if he could please attend with me and he replied “you’re just going to die anyways, why the helk go and bother with finding support.” Such positive words there… NOT!

My younger sister understands what I going through from a siblings perspective. While she may not feel my pain as it is, she is generally the one to see me in it. Or she may not have her hair falling out but she watches mine. All things said and done, she “gets it.” Her understanding is not as well rounded as mine but she does understand when I say, “I don’t feel good and am tired”, it means I REALLY don’t feel good and I am REALLY tired. She understands that part of lupus.

As for my mom, she “gets it” to an extent. That’s about where I’d leave it too. Some aspects of lupus just have to be experienced first hand. A person without lupus cannot experience them. No simulation or similar experience will create the understanding to some of the aspects of lupus. Even the informational books and videos do not do lupus justice. It is an experience like no other. And it’s hard to “get it.”

Monday, November 8, 2010

Get Well Cards

Get well cards are part of the traditional American sick culture. When someone gets sick, you send the person a get-well card. I know they’re well intended. I know its courtesy. But get-well cards to me are right up there with getting told my dog died. Honestly, they depress me. The last thing I want to do is read a card about how I will be all better in a little while. They remind me of truly how sick I am. Which of all the things a chronically ill person wants to think about, the fact they’re sick probably isn’t on the top of their list. Chronically ill people generally like to try to escape from the thoughts they are sick.

I can recall when I first became extremely ill (first flare… need I say more?) Get well cards came flooding in. Each night I would open them in bed and cry. Already the doctors told me what I had wasn’t ever going to go away. With every seal ripped I would become more and more depressed. To me the cards were hypocritical and offensive. For I was never to truly “get well” in the sense of being 100% healthy again. Feeling better even seemed far-fetched at the time.

Amid all of the depressing get-well cards, there was one envelope I truly looked forward to. From my illness a friendship was born through ink. This person would write me once a week even if I didn’t respond. Her letters always made me laugh and gave me something else to think about besides how crummy I was feeling. I think she’s a true angel sent from God for me. Those letters helped me through a truly tough time.

Now, I write to people all the time. Returning the favor to others who are sick, serving or just need a cheering. A good funny letter is appreciated by anyone. Especially to someone who is ill and needs a mental break. Besides, there is something just special about getting a letter in the mail. Envelope therapy has to be one of the best things on earth!

Saturday, November 6, 2010

Simple Little Things

After my rather shocking and dark post yesterday, I would clarify that “those thoughts” only truly travel through my head on rare occasions (like last night…). Please do not think I am leaving this earth anytime soon. There is too much for me to live for than to not. With that being said, I move on to today’s topic: simple little things.

Life as a whole is built upon large details in my opinion. Most of the details are blatantly obvious. Like the need for food, shelter, water, education, so on and so forth. What makes life unique is how the individual appreciates the simple little things. How they take time to slow down and truly enjoy what is going on around them. Many of the best parts of life are missed by simply not slowing down or by wishing life away.

When I was younger, mom would have me go outside and weed the rose gardens. Now, I thought of it the same way any other 13-year-old kid would think about work- “Do I have to Mom? I want to play with Freddie next door.” So I would go and weed the rose gardens but would do it with quite the look of distaste. Hurriedly I would yank the weeds up and throw them on the lawn. Now, weeding is something I look forward to. I quite literally stop to smell the roses and appreciate the great gifts of beauty that exist in my front yard. Weeding is both sweet and savory to me: I smell the sweetness of the blossoms and savor every one of them. Not too many teens do that normally. They race through weeding and life at a break neck speed.

With enjoying the simple little things comes prioritizing. Since I actually stop to enjoy the finer points in life, it takes me a little longer to get through tasks. I have had to find what truly matters to me and what I just did for no reason. Everything I do in my day is for a reason. Things that I cannot find an importance or reason for doing, I do not do. Of course within reason… Taking out the trash is not optional.

Life is too short to wish it away. I don’t wish mine away. Everyday I try to find enjoyment from the simple little things because the bigger picture isn’t always very pleasant. It’s also too short to rush through. So sit back, relax and enjoy the simple little things in life.

Friday, November 5, 2010

"Those Thoughts"

Having lupus is a mental battle like no other. It’s hard to wake up in the morning and go “I can do this.” Most days I just kind of mumble it. Like it’s some sort of required recietment to appease the higher powers. And there are the times where I wonder: “what if I just left?” I sure wouldn’t have to deal with lupus anymore. Helk, I wouldn’t have to deal with anything anymore. The pain would be gone and I would be free.

Most days feel like I am alone on an island locked up in a little box with only a peep- hole for light. The island I see out of peephole is not the picturesque sandy white beaches and palm trees. This island looks like it’s an extension of Siberia. Bleak, dark, cold and a harsh environment. Extremely lonely and not a very positive view.

Nobody seems to understand… what it’s like… to live… with lupus. To have something so powerful and painful to be hidden inside, something that cannot be easily explained or understood. I can’t escape from it; it doesn’t go away or give me a vacation. Ever.

It frustrates me to watch people get depressed and take simple little things for granted. Even more to watch them take EVERYTHING in life for granted. Things that I will never again be able to take for granted, some activities I will never be able to do again. I wish my worries and concerns were the same as a healthy 17-year-old girl. Concerns like “I wonder if he likes me?” or “what color lipstick should I wear today?” Instead of “am I going to make it through my ½ day of school today?” and “how in the world am I supposed to hide these bruises so that people don’t think I’m abused?!?!”

Alas, “those thoughts” do not come from some simple little things. Sometimes I think it would be easier for the people around me if I just went away. They wouldn’t have to watch me suffer and I would no longer be around to bother them. No more emergency trips to the doctors because something went out of whack, no more drugs and no more “I don’t know what to do for you because there is nothing we can do for you. Just live with it.” Admittedly death sounds very appealing sometimes. Just letting it all go…

What has stopped me from going away then? I’m not going to give up. I want to prove everyone wrong (the ones that said I won’t make it or can’t do it.) I want to be here to see my grand children. To graduate from high school. To show the world that just because I am chronically ill doesn’t mean I can’t achieve my dreams. One day at a time I do just that. I work towards achieving my dreams.

My family would be devastated if I took my life. I cringe with the mental image of my sister finding me dead, blood all over the bathroom floor and me just lying there all pale. Then at the funeral how everyone would be sad and crying. How I would be talked about only under a hushed voice because I committed suicide and it’s an unforgivable sin. But death can still be appealing. Feeling liberation at last. However, succumbing to “those thoughts” wouldn’t do the rest of the world around me any good in the future.

I want to go out in style, not in desperation. Suicide no matter how it’s committed is not stylish. Not in my opinion anyways… I am going to die from extremely old age. Or if lupus, the silent killer wants to take me. He’ll have to drag me out kicking and screaming.

Thursday, November 4, 2010

Fog...

It’s really not that easy to describe. But I’ll try my best. When I am foggy it seems like the whole world is moving far too fast, nobody is speaking English and I can’t connect the dots for the life of me. Confusion is a great understatement for how I generally feel after talking to a person while foggy. They talk too fast, I ask for them to repeat what they just said. Then they just talk faster and raise their voice. This then confuses me even more and makes me a bit scared because now they might also be offended. I just can’t think straight for the life of me when I’m in a fog!

I do dumb and illogical things when I am foggy (well… I do things that are dumb and illogical when I am also not foggy but there is a difference…) The latest being freezing my very nice writing pens and then micro waving them because the ink was frozen. I didn’t think about the fact that what I was doing was very odd. Actually, I don’t even remember putting my pens into the freezer, but that’s where I found them! I am afraid that one of these days I am going to forget to put my pants on or something like that! Honestly when I am genuinely foggy you could probably sell me ice in antarctica and I would think I was getting a screaming deal. On ice.

The fog is deep and is caused by the demon lupus. Nothing really warns me as to when I will have a foggy spell. It just happens. Now, working through pain in my opinion is easier than working through the fog. Working through fog is like trying to use a plastic spoon to dig through a concrete floor. Not very easy. Pain I can at least visualize and try to “morph” more or less into something else using imagery. The fog has no image because I can’t think clearly enough to give it an image.

Fog doesn’t hurt. I don’t get a headache with the fog. It’s just like the world is gray and fuzzy. Not a cuddly fuzzy though… Fog is a bother. Annoying, strange, looming and ominous most days. I can always hope for sunny skies both above and in my head.

Tuesday, November 2, 2010

Commentary on Common Lupus Comments

Sometimes I truly wonder about the level of human intelligence. I really do. Especially when it comes to giving advice or just commenting in general. Most of the time I don’t want to tell anyone I have lupus. More so people who are older than me than my peers. I’ll start with the basics. Here’s why:

“But you don’t look sick.” – Thanks, I work hard to look “normal.” I’ve cut my hair short to hide the fact that it is falling out. I use concealer to hide some of the rashes. And you are seeing me fully medicated.

“Are you sure it isn’t lyme disease, a cold, cancer, the flu, some weird infection that my great aunt’s sister’s nephew has, or something new and never heard of?” – Yeah, my rhuemetologist and I are 99.9% sure it’s lupus. But I’ll make sure to bring that up with my rhuemetologist. Hope your great aunt’s sister’s nephew feels better by the way.

“You’re too young.” – Ummmm…. No I’m not. I’m 17. While that may be a bit on the young side, it’s about the right age when lupus shows up.

“It’s all in your head.” - Tell that to my blood work. Tell that to my hair, joints, organs and skin. I’m NOT a hypochondriac!

“You’re on meds for it, so you’re all better.”- WRONG! Taking meds does not equal being 100% again. It just helps to slow down and sort of control the damage. If I’m lucky.

“You know, I’m pretty sure there’s a cure for that. I read about it on this one website that also talked about how eating rats cured headaches.” – Ya know, if I were able to cure my lupus by eating dead rats, wrapping my house in cling wrap or some other crazy thing, I would totally do it. There is not a cure, or else I would be cured.

“I heard that taking this medication (insert random medication for something completely unrelated) makes lupus go away.” – I really don’t think that Viagra is going to make my lupus go away, but I’ll bring it up with my rhuemetologist. Thanks.

“You just need to get up and move. You’re just lazy.” – First, I would move if I weren’t in so much pain. Second, I’m not lazy.

“Don’t get near me, you’ll give me lupus.” – I CAN’T give you lupus. I’m not contagious. This is genetic in my case. You can also cut out looking at me like I’ve got 11,000 eyeballs or something. It’s really insulting.

“Just take probiotics, vitamin Z 16 or any other unsocilicited medical advice and you will be better.” – I’ll bring that up with my rhuemetologist. Thanks. BTW, what is vitamin Z 16? Is that something Batman makes? Just curious…

Yeah, the comments get old pretty quickly. It’s frustrating. It’s annoying. I wish people knew what they were saying is truly irritating to me and that although I’m smiling on the outside, these comments make me cry on the inside.

Monday, November 1, 2010

Mr. Raynaud

He is quite the guy. Likes to make my life even more complicated than it already is. During the summer, he is not as present. But seeing as it is no longer summer, he has come about again. More an annoyance than anything else, he pesters me on a daily basis.

Raynaud’s phenomenon can come along with having lupus. I have it. Basically what happens is when my hands are exposed to the cold (air conditioner, outside temperature, anything cold, even ice cream) or if I get stressed the blood vessels in my hands and sometimes toes go into spasm. This cuts off the circulation to my hands and toes. There is a very distinct color change that occurs. First my hands and toes turn blue from lack of oxygen. Then white from a long time without oxygen. At this point the amount of feeling I have in my hands is close to none. Quite literally I feel like my hands are made of stone, they’re heavy but I can’t really feel them. What happens next is the worst part of the whole thing. Circulation returns. My hands turn BRIGHT red and feel like they have been slammed in a car door. The tingly burning itching sensation is crazy.

Some other notable things that happen when I have an attack is my core temperature drops dramatically (how does 91 F sound???). It’s almost like I have hypothermia. I become extremely tired and foggy. If it’s a really bad attack, my lips turn blue as well as my hands and feet. Sometimes I feel like a human Popsicle. The kind with the blue, white and red flavorings.

Now, there are things a person can do to help prevent attacks. Staying out of the cold is a good idea. I wear extra thick socks year round to help keep my feet warm (I have really bad circulation to begin with, Raynaud’s is just the icing on the cake.) During the winter months, I keep a heater going in my room. Only problem is, when I leave my room the temperature change causes an attack. Wearing thermal underwear helps sometimes. Gloves are wonderful. To hide an attack, to prevent an attack, to just stay warm, gloves are truly amazing. Stay away from stress. I can and have had attacks from just getting stressed. As a matter of a fact, I got diagnosed with it after I had an attack right in front of my GP. It was spurred from all the stress I felt from seeing the doctor. Perfect timing!

Having Raynaud’s is not the end of the world. It’s just very annoying. I just bundle up and go about life.