Saturday, October 30, 2010

It's Alive

I can tell when lupus is up to something. It’s not very good at hiding. For the past two weeks now I have been battling a cold. I’m pretty sure it’s on the last legs now but the demon inside me has been awakened. Lupus has decided to be active yet again. Wouldn’t call it a flare (yet) but just a spike in activity. Flares generally involve my organs as well as everything else. Luckily my innards so far have been unscathed (or haven’t had any further damage) in this particular spike in activity. Not always the case in the past active periods.

Others with lupus can tell when they are going to get a flare (or going through an active period) by a feeling in their stomach or some other very distinct symptom. How can I tell? Several things happen. First and foremost: the fatigue worsens. Second and very importantly: fluid retention/swelling. Gets so bad I can’t even put my shoes on. Coming in as totally annoying for third place: mouth sores. Now I’m not talking about cold sores, these are mouth sores. Not little ones either… It’s hard to describe what I feel but it is different from the “normal un-normal.”

Generally when an active period comes about for me there’s a “wait and see” period. Sometimes lupus will settle down, other times the opposite happens. The truth is, there isn’t much they (the doctors) can do for me. So there is little use in me going to the doctors when my lupus is active. If I do go, I am told to “just live with it.” Which is a very depressing thing to hear. I am on the “standard” regiment for treating lupus as far as medications go. There aren’t really any other options. Not much else to do besides sit and wait it out. So I shall sit patiently and wait and see.

Thursday, October 28, 2010

The Five Stages

The Five Stages

When I got diagnosed with lupus, my world quite literally came crashing down around me. Every hope, dream, fantasy, seemed completely out of my grasp. I “lost” part of me when lupus came. It’s a part of me that will probably never return. I can’t really describe what I “lost”; there is no real description for it. But I do know this; I have “found” that lupus is as much a physical battle as it is a mental one.

1. Denial- This phase did not last long for me. I knew there was something wrong but for a while I didn’t want to say anything. I have just recently been able to say the word “lupus” without hesitating and getting super nervous. It is such a powerful word and hard to swallow. But I do realize I have it.
2. Anger- Probably one of the hardest phases to get through. I felt pent up and just mad at the world. Asking “why me?” and saying “it’s not fair!” Even today I ask “why me?” but without the anger associated with it. I say it more in the terms of “I’m not going to be a super hero anymore” rather than I’m mad.
3. Bargaining- “Please make this go away! Please! I will give you anything to be normal again.” Bargaining is so different when I’m bargaining with my life. There is no coupon to save me from lupus.
4. Depression- I hit this stage intermittently. Never have I been depressed to the point of shutting off my life after being diagnosed with lupus. That’s not to say I haven’t had a few good cries though.
5. Acceptance- I fully accept the terms and conditions of lupus. This is not an acceptance of love; this is an acceptance of necessity. I can’t get rid of it but I can say, “I can do this and I am going to fight.”

What I have listed above are the five stages of grief. All five stages bring on their own challenges. Some stages in my experience are a bit more challenging than others. It truly varies from person to person. Just because I have gotten to stage five doesn’t mean all is good. Easily I can fall back to stage one. Having lupus is like playing a game of chutes and ladders mentally. You sometimes land on a place with solid ground or you can go tumbling down the emotional chute.

Tuesday, October 26, 2010

Pain

It’s an ugly four-letter word. Emotional pain can torture the mind, while physical pain can torture the body. Both are equally as bad. It hurts to have lupus. To not have answers, to not be able to know when the next complication is going to come and to not have others understand. My body feels like it has been hit by a bus. Everyday I am achy, my joints scream and “ouch” doesn’t even begin to cover it. Pain is my constant companion.

People do not always believe a person is in pain if they do not look like they are in pain. By the time I look like I’m in pain, I’m in a lot of pain. Others think the pain a person experiences with lupus is fake. I can honestly tell you, it is real pain. To the non-believers, stick out your foot please. So I can come and stomp on it really hard. Then you’ll be in pain and I’ll say “Gee, I can’t feel it so therefore it’s not real.” I will then proceed to laugh and walk away.

I wish I could scream and cry about the pain. But screaming and crying wouldn’t help anything. It wouldn’t make the pain go away. In some ways it would just make things worse. Not only would I be in pain but I would also be drawing attention to myself. Which I do not want to do.

Emotionally, having lupus is extremely painful. It’s like having an anvil over my head every single day. Hanging, in gleaming black it haunts me. No matter how hard I try to forget it, it will not go away. As soon as I think I have it in the far corner of my mind, lupus comes and slams me physically. Which brings me back to square one mentally.

Pain has to be one of the worst four letter words ever…

Monday, October 25, 2010

Sunshine

I used to love swimming at the pool in the summer all afternoon long. Diving, doing laps, seeing how long I could hold my breath and tanning in the sun. Warm rays would beam down on me and I would get sun burned. This would only happen until I would get tan, which usually was a couple weeks into the season. I used to take the sun for granted. Now I do not.

Being in the sun now is not good for me. Even after being in the sun for only a few minutes, my lupus symptoms get worse. Some of the sun’s effects hit me almost instantly: the fatigue being the main villain. A couple hours after exposure, the sores come. Mouth sores and sometimes nose sores. I hate them! Even worse is the sun sensitivity rashes. Those can go some place far far away.

Thankfully I live in one of the cloudiest places on the earth (or in my opinion it is anyways…) and I really only have to worry about the sun during the summer. Mainly I just stay inside during the sunny parts of the day. If I do go outside, I generally wear a fairly covering outfit. Most importantly I douse myself in a generous amount of sunscreen. Over the summer the one time when I did not fall this protocol, I spent the following few days on my back. Another lesson learned!

Saturday, October 23, 2010

Moving About

Physical activity is very important to me. I enjoy getting out and running or riding my horse. Lupus is not going to crimp my activity. Or should I say I haven’t let it. Granted when I had my first flare before I was diagnosed with lupus, I wasn’t allowed to ride. But once given the okay, I was back on whipping my horse into shape.

Exercising while having lupus can be challenging, believe me I know. My joints ache, I’m foggy, and I just feel icky. Luckily I have been gifted with motivation. So I put on the running shoes and hit the road. It doesn’t always feel good physically, actually it tends to really hurt but emotionally it is empowering. Same with riding. A person can scream and what not as much as they like to whilst they run or ride (within reason some horses don’t appreciate it.) Observers think nothing of it. They just look at me like I have about five heads. I’m cool with that.

Another aspect of lupus I battle while exercising is the dreaded stiffness. I am stiff in the morning, mid-day and night. Naturally I am stiff but lupus has only made it worse. I do stretch and it helps to keep what little bit of flexibility I have intact. If I do not stretch and exercise almost every day, I turn into a board. Quite literally. My whole body tends to lock up and that’s not good. Then it takes at least a week to get back my tiny bit of flexibility.

Now, I do test my physical boundaries from time to time. And I regret it for the next week. Pushing myself harder does nothing for me it actually does more harm than good. Every now and then I have a day where I feel almost normal again. Those would be the days where I also try to exercise like I was normal again. Learn from my mistake: just because lupus gives you a bit of a day off don’t go scaling mountains. It’s a very bad idea and tends to result in a weeklong saga of very bad days. Been there, done that.

One of the most important things to remember when exercising is to pace your self. I have spent over a year building up my stamina so I can ride my horse for an hour. Generally I don’t even last that long. At first, I only lasted 15 minutes tops. Take things slowly there is no rush to go farther faster. Unlike before I had lupus, my body has a major opinion about everything. Taking things slowly gives the body a chance to form a somewhat positive opinion about physical activity (it helped me anyways…).

After exercising I am wiped. Most people after they are done exercising feel a little rise in energy. I feel the exact opposite. Comparable to an avalanche, all of my symptoms come roaring down on me. I really don’t appreciate it either.

Being physically active while having lupus is possible. Just be careful and listen to your body. Pain equals no gain.

Thursday, October 21, 2010

When to Complain

Nobody likes to hear complaining, not too many people like to complain either. I’ll admit it, I complain. Sometimes more than I should too. It happens. Sometimes it just slips out and other times I fully mean what I am saying. Generally I do not complain insistently unless something is really up.

Now, complaining every single day about lupus can get old and boring. So I try my best not to. I might state how I am feeling but I don’t sit around and whine about how “my hands, feet, etc hurt, I didn’t get any sleep and tra la la…” Instead I try my best to push it to the side. Most days it works but sometimes there are slip-ups.

I do complain when I notice considerable changes in my lupus. For example, right now I am having the cold from hell and am noticing some of my lupus symptoms have become much much much worse (for those of you who do not know, a cold can = flare very quickly.) This is something to notify your parents or someone you trust about. They need to know so an eye can be kept on it.

Now, this is all fine and dandy, but you have my full permission to tell your doctor how it is. Don’t hold back. Complain like there is no tomorrow. If you are in pain and feeling like crap, make sure your doctor knows. It is important! Not telling your doctor about some symptoms may be life threatening. The best policy is honesty.

Complaining all the time is not a good idea but sometimes it is the right thing to do. Use good judgment and complain away!

Wednesday, October 20, 2010

Tagging Along

Wearing a medical I.D. tag for lupus is a very good idea. I never know when I might become unconscious or unable to respond. My tag will speak for me.

Originally when I was told I had to wear one, I COMPLAINED about it. The last thing I wanted on my wrist was a clunky piece of metal and a steel chain. Plus everyone looking at it and labeling me as “sick.” Now, I’m not really a very “fashion forward” person but I do draw lines. Wearing something that looks like one of those choker chain dog collars was not going to happen! It’s just a pain and ugly to look at. Not to mention the chain rubs and can be quite irritating.

Lauren’s Hope has been my saving grace(www.laurenshope.com)I couldn’t seem to make a bracelet that would stay together for more than a couple weeks. My Lauren’s Hope creation has lasted me over 6 months! Which is saying something because I am rough with my I.D. bracelet. Not on purpose but I guess I just wear and tear things pretty easily.

What to put on the tag is entirely up to you. On mine (and I need to update my tag, again… sigh…) is: my real name, severe allergies and an in case of emergency phone number/ICE. Kind of spaced about putting the whole lupus thing on my tag even though I got it for that purpose. It was a blonde moment! Also, if you have an I.D. and you have more things to put on it than space on the tag, make a wallet card. What to put on a wallet card is also up to you but I have on mine: medications, doctor’s office numbers, and full contact information. An ounce of prevention is worth a pound of cure!

I have found that in the time I have worn an I.D. it hasn’t really been a very big deal. Many people just think it is a normal bracelet. That’s fine with me! Plus, I am ready for whatever lupus throws at me (well… as far as identification goes anyways.) So, if you don’t have one but should, get one! It never hurts to be prepared.

Tuesday, October 19, 2010

Energy

Those who have been around me for any length of time might note I’m not very energetic. Not anymore anyways... Before lupus, I had more energy than a room full of preschoolers on caffeine! My sleep consisted of about seven solid hours a night and I was wired every day. I could go and go for ages. No boundaries; didn’t have to think about how what I was doing might affect me later. A full day of school wasn’t hard for me to handle on top of riding horses and running.

Now I am the exact opposite. My energy is about as much as one tiny triple AAA battery. Anything and everything I do, I hear about from my body for the next week. It does not forgive me for anything. Now a half-day of school is really pushing it. Riding horses and running has to be done in the morning or else I don’t have the energy to later on.

There are energy drainers. I am well aware of them. In first place comes: stress. So I try my best not to. For the most part I have learned how to just let things roll. Takes practice though! Second place is awarded to: the cold. Uh huh, that’s right. My heating system is fried. So… when it gets cold, I get tired and generally see my good friend Raynaud. After that would come pain. May sound kind of odd but pain is exhausting. Some honorable mentions are: shopping, not eating right, and doing challenging mental tasks.

It’s hard trying to explain to other people that a seemingly healthy looking 17 year old girl doesn’t have the energy to go to a football game after only a half day of school. Most of the time I refer them to “The Spoon Theory” http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ and after reading the essay they tend to have a shallow understanding of why. Some days it can be quite saddening to me that I have been reduced to comparing my energy level to cutlery. There is no true understanding until a person walks a mile in my shoes (or some one else’s with lupus.) Then it sinks in and they truly do understand.

Every day I do not know exactly how many “spoons” I have. Some times I will over estimate how many I have and crash. Other days, I manage to manage my energy quite well. It’s a learning experience every single day. Never do I spend a “spoon” in vain. There are too many other things to do with it than use it in a negative way. I appreciate what little energy I have and use it to my best ability. That’s the best I can do and I hope others do the same.

Monday, October 18, 2010

Friends

Friends are so important to me. I do not have a very big social life. But the friends I do have, I cherish. Some have been made through letters, others through school and some just pop up. Regardless of how I make them, I accept them for who they are and where they come from. Unconditionally.

When I first got sick. I found out who my real friends were and which ones were just “seasonal” friends. It was shocking how many were “seasonal.” They were only friends with me to up their status in the social totem pole (I’m kinda at the bottom, ahem…). But, the ones that held on are amazing, fantastic, wonderful people which I am very proud to call my friends.

I always have the energy for a friend whether they need help, just want to talk or if they need a pair of ears (though sometimes I’m in my PJ’s and drugged pretty good). Listening is a skill I am working on. Still don’t have it perfected yet but I’m getting there. One very important thing about a friendship while having lupus is not letting the illness be the only thing that is talked about. Even though lupus comes and kicks my butt every single day. It gets old to hear about how crummy things are.

Friendships are not relationships. I have no energy to put into a relationship (dating type) but I will happily sacrifice my little energy (spoons) for a friend because my friends have sacrificed so much for me (for example: sending me therapy in an envelope, teaching me a new skill, walking in the cold, too many things to list here…). It’s not easy to be friends with someone who is always hurting and can be very grumpy. But somehow they manage it. Thank you so much :)

Most days my motivation to get up is my friends. I cannot begin to stress how important friends are. Without them, I think the whole world would stop spinning. That would be a major problem! Others with lupus and friends who know someone with lupus: there will be bad days and good ones but hang in there!

Life is far too short to not have friends. Make sure to treat them well and appreciate their gifts. Everyone is spectacular in their own little way.

Sunday, October 17, 2010

The Cape

Being superwoman is a hard job. Mind if I take the cape off for a little while? Don’t worry, I’m not going to do anything dumb. I’m just going to act how I really feel for a little while, absolutely miserable. My response to what seems like endless questions of “how are you feeling today?” will be the honest truth. Instead of “pretty good or just fine” it will be “I feel like sh*t, I only got three good hours of sleep last night and I hurt so bad right now I want to die!” It’s the truth.

When a person gets sick, it’s like there’s some sort of unwritten rule that they must be brave and strong. They can’t show their fear, cower in a corner, cry, scream, and yell. Or else some see them as weak. It’s frustrating. That’s where the cape comes in. Acting like everything is okay when it’s not is no easy task. I feel like superwoman most days. Keeping a cape over me to hide the truth.

But there are times (like right now), where I have set aside the cape. I will tell it like it is. I’m not feeling brave or strong. I am feeling what every other person with lupus in the world feels most days: pain and fear. Lots of it. Dare I even ask “why me?” I wouldn’t even give this to my worst enemies if I had any! This sucks, I hate it, and I want out of this cage. Let me be free once more. I want to feel invincible again. Party until two in the morning and not pay for it for the next week. Go running and not spend the rest of the evening curled up in pain. To attend a full day of school again and play piano like I used to be able to. I hate taking 15 different pills a day to somewhat “control” my lupus. Most of all, I want to feel healthy again. I am sick and tired of being sick and tired!

Now with this being said, please realize this is not for sympathy or for people to feel bad for me. I don’t want that. This is the truth and nothing more. Sometimes it is okay to set the cape aside and just be human. The truth can be painful but it needs to be heard. It is not a weakness to be scared. Remember, it is okay to be yourself. Do not loose yourself in the cape.

It is time for me to slip my cape on again. I have said the truth. Please don’t be afraid to do the same.

Saturday, October 16, 2010

Rise and Shine :)

Everyday I wake up and smile. Doesn’t matter how crummy I am feeling, what is on my mind or how much I want to hit the snooze button (it’s sooooo tempting!). Each day is a gift for me and might as well show appreciation for it. Life is far too short to get up and frown. Besides, I think it makes my morning breath worse!

Now, comes the challenging part! Getting out of bed. I think I might be related to the “Tin Man” from the “Wizard of Oz.” Or it sure feels like it. Hopping out of bed is not something I do. I do more like a “thunk, creak, owwwwww…. Pop, snap and crunch” out of bed. Yes, mornings are definitely quite the event at my house.

Breakfast is the most important meal of the day. The consequences of not having breakfast, is well… bad. Coffee is considered to be the breakfast of champions but for this lupie, a breakfast of milk, fruit and pain meds is more effective (or at least the pain meds are…) Now the waiting game begins. Things will go one of two ways: my stomach will say life is good or completely rebel about breakfast. Luckily it’s generally the first option rather than the second.

Getting dressed could very well be the next Olympic sport that has yet to be discovered. Or it seems like it. Some days I really wonder what a clothes designer was thinking when they put five buttons on a pair of pants AND a zipper. It’s hard enough to button a button, let alone five! If only there were more pajama days at school. That would be sweet! Sweats work best for those days when buttoning anything is out of the question.

By the time I have completed these seemingly simple tasks it is usually ten in the morning. Three hours after I originally put a smile on my face. Now, the real action of the day can begin!

How it all began...

I started having health problems when I was 14. One day I woke up and was covered in rashes. Nobody knew what the rashes were from. Mom thought ringworm, the dermatologist said a tropical skin infection, and the family doctor had no clue what so ever. So I was just told to apply this magic potion lotion and it would go away. It did not.

Fast forward to 8 months later. I got really sick. Scary sick. Hair falling out, lost 25% of my body weight, still had the rashes, fatigue, so on and so forth. That’s when it was discovered I had an autoimmune disorder. But which one was all of a mystery. Seemed like every specialist in the world saw me before I was finally referred to a rheumatologist. The rheumatologist told me as soon as I gained the weight back, I would be good as new. Slowly I was able to gain back the weight. However instead of getting better I got worse. Gaining the weight back was the fuel for the fire. More symptoms came, the swollen joints, the pain, and the fog. Lupus showed it’s ugly face big time.

At 16 I was diagnosed, I’m 17 now (a young 17…) and am doing my best to live life to the fullest regardless of lupus. Everyday is a challenge and a learning experience. Many teenagers do not stop to enjoy life, stress out about everything and take the simple things for granted. Lupus has taught me that everything is a privilege and not to take anything for granted. A life long journey lies ahead and I am ready to walk it.