Saturday, January 22, 2011

Dreadful

Okay warning in advance… this is not going to be a pretty blog post. Please hit the little red box on the top right hand corner and go to the florist’s shop if you want pretty.

All week long I have been fairly repetitious on my standpoint about life. My week down right sucked. It was so bad I wondered why I was even still around last night. A dirty rotten no good very bad week.

I am angry, sad, scared and feeling quite pissed right now. My life consists of pain, fatigue and lack of control. Every morning I wake up hurting. Every day I trudge through hurting. Every night I try to sleep while hurting. There is no un-hurt right now. No shelter, requiem or sanctuarary. Makes for some very dark perspectives on life. To the point of muttering, “why stick around?”

All week I felt totally artificial answering questions about how I felt. ‘Don’t think I answered a single person honestly. I do not feel good at all. Dreadful would be more of the word to use. Fatigue has been enough on it’s own to just about kill me. Sleeping for close to 14 hours once I finally pass out. Not feeling energized. Just kind of trudging through things in a zombie like state. This not how any teenager should live. I am missing out on so much because of lupus.

Bitter tears well in my eyes but I cannot actually bring myself to cry. I am experiencing too many emotions to cry. My quality of life is so depressed compared to others. Other people can think about going out of state for college or how awesome their all day shopping trip is going to be. My thought for Friday “do I even have enough energy to drive myself home from school today?” On Tuesday I actually had my sister drive, even though she was not supposed to. Considering I was falling asleep during the middle of a performance in class… I was far from fit to drive.

My mom and I have been clashing. If there is one normal thing about my teenage life, it would be the verbal brawls between my mom and I. Going back and forth about how she really doesn’t need to know all the details of my life because she tends to blab everything. Not even the strongest duct tape will keep my mom’s mouth shut about anything. So I feel like I have little privacy or true trust with her. Luckily my dad has been out of town because he just doesn’t deal with anything illness or drama related well.

Even things I should be happy about I am not. I feel too awful to be happy or at this point to even really smile. Life just sucks right now.

Awfully hard to get motivated to get out of bed in the morning each day knowing what I face. Sometimes I just wish someone would put me to sleep until there was a cure. Granted I may be gone for centuries but when I would wake up, I would actually be able to live.

Sometimes I think the doctors don’t care. They don’t have to live with me, watch me suffer or struggle. All they see is 20 minutes of me. Just brush me off and throw me away. There is nothing to do… nothing to be done… no cure… no revolutionary new treatment… just temporary fixes… temporary wears off. The only option they are pushing for prednisone but I flat out refuse. Options, I want options. Not a dead end street.

Most people who see me do not see the “behind the scenes” of my life. How hard I work to look “normal”, act “normal” and seem “normal.” Trying to hide everything that is going on. Putting up a front of total “normalcy.” Tricking people into thinking things are perfectly fine… when they’re just not.

I guess this all really begs to ask the question “are you okay Katyann?” My response is I’m not quite sure actually. Right now I am in such mental turmoil, I can’t really say yes or no. A lot of things just do not feel right, right now.

Wednesday, January 12, 2011

Sick Suggestions

In the past few weeks or so it has been my general observation that there are lots of seasonally sick people out there. I know what your fatigue, your pain and overall ickiness is like. Here are some tips from one sickie to another.

Sleep is critical from recovering from illness be it on-going or just seasonally sick. If you find your sleeping patterns to be skewed, don't fret too much. A good rule of thumb is to cut off all naps at 4:30. Go to bed at or before 9 p.m. Rest throughout the day if your body needs it but try to avoid resting to the point where you do not sleep through the night. If you are having troubles sleeping, read something really boring or just stare at the ceiling. Eventually you will close your eyes out of boredom. Counting sheep is too much work for me... or else I would suggest it.

Eating patterns can be interrupted when ill. I almost never feel hungry. Actually, I have a feeding schedule I follow daily. Generally I do not realize my body needs more fuel until I am about ready to pass out. There are ways to avoid this. If you forget to eat, make a feeding schedule. For example: 8 a.m. one yogurt and a piece of toast, 12 a.m. PB and J with an apple, so on and so forth. Map out your food day and follow accordingly. Make sure your calories meet your needs.

Nothing tastes good. Sometimes nothing tastes better than dirt to me. On such days I will have some crackers and milk or a power bar. Just to have something in my stomach for the day. Both options provide some energy while not having to eat more than a few bite fulls.

Stomach is unsettled or you are 12+ hours out from throwing up. Start light. A piece of lightly butter toast (one and only time I am going to suggest white over wheat...), popscickle, low sodium broth, a few crackers or dry cereal. Personally I am a fan of toast points. DO NOT eat apples, tomatoes, pizza, or anything else with a fair amount of weight or spice. Before you know it, it will be back up again.

Drink your fluids! Extremely critical when getting over something. I love orange juice when I have a cold. But don't just drink orange juice! Water, lots of water. Helps to flush things out.

Dropping weight while sick? Shedding a few pounds is normal but if you have lost lots of weight... you probably need to put it back on. There are many ways to sneak in calories so you do not feel like you are eating more than you can handle. First, increase the milk fat up to 2% (really really skinny? Whole milk). So if you drink skim like you're supposed to which has 80 calories per glass, upping to 2% gives you 130 calories per glass. An extra 50 calories per glass without even thinking about it. Second put a tablespoon of oil (canola is a nuetral oil, you'll never taste it) in your cereal, it adds calories without making you eat more. Third, have munchies. Things like trail mix, granola, pretzels, and popcorn are all very munchy esque. Trail mix and granola especially have lots of calories for a little portion. Try to have calorie dense snacks. Peanut butter and crackers is one of my favorites. Whatever you do, do not stuff yourself until you puke. The whole objective is to slowly put the weight back on, not to puke!

Achy icky constant pain. Try taking a warm bath or shower to relax the muscles (added bonus, if you are congested the steam helps decongest you.) Cover yourself with warm blankets in a position which feels semi-comfortable to you. If worst comes to worst take some tylenol, advil or alieve. Although I do not reccomend these products for hard core pain. They have little effect on it. But for minor aches and sick pains... it works fine.

Congested to the point where you can't sleep because you feel like you're suffocating? Niquel to the rescue! Or if you are like me and can't take Niquel, try Vicks Vapor rub. If you're really special like me and can't have Vick's on your skin put it on a wash cloth and set it next to your head. Welcome relief and possibly the sandman.

Fatigue is just part of the whole sick thing. However, there are a couple ways of coping with it. First, a simple way to get a bit of a boost is to take lots of vitamin C. Sometimes a good rest will help to replenish energy. If all else fails, call in sick and sleep. Your body needs to be provided with the tools to recover in order to fully get over whatever you have.

If you are: coughing up blood, puking for more than 24 hours, peeing dark brown urine, have a really bad fever, etc... GO TO THE DOCTORS! You need medical help fast!

Hopefully some of this hints, tips and tricks help the seasonal sickies out there. I use them all the time. Well wishes to all!

Monday, January 10, 2011

Questions and Comments

“How do you do it?” “How can you not complain all the time?” “How do you get up?”

“I could never be you.” “I could never live my life like that.” “I would just die.”

“I don’t know how I would deal with life.” “I wouldn’t be able to cope with it.”

“I would hate to be you.” “What can you eat?” “Why do you do that?”

“Why can’t you go out in the sun?” “Do you ever feel hopeless?” “Why you?”

“Must be challenging balancing all of the paper work.”

“Getting up in the morning is so hard when you’re sick I have found out.”

“What keeps you going?” “Do you hurt?” “How long will this last?”

“It’s all in your head.” “You look normal and healthy.” “Nothing is wrong.”

“How are you feeling today?” “How are your spoons doing?”

“How are you doing today?” “May I help you?” “Is there anything I can do?”

“What’s next?” “How long have you had this?” “Why don’t you cry?”

“Everything happens for a reason.” “You will get through this.” “You’re strong.”

“You’re hands look swollen and huge today.” “Are you okay?” “Hello?”

“What’s next?” “Isn’t this thing supposed to be managed sometime?” “Feel better.”

“You are a gift from God.” “You will light the world on fire someday.”

Welcome to a day’s worth of questions and comments. My response: “I take each day one step at a time and work with what I have. Instead of looking at what I no longer have, I look at what I can do. This is a journey I will be walking for my life. Many months of practice has led to the illusion of normality. Honestly I could cry buckets but it wouldn’t change a thing. I have learned to say everything is fine even when it is not. Management is what I strive for but doesn’t always work out that way. Of course I hurt. Probably enough to define hurt in the dictionary. I eat whatever I want to eat as long as it is gluten free. Yes some days I feel beyond hopeless. Thank you for the compliment. You’re quite amazing yourself.”

Wednesday, January 5, 2011

Dismissed

In an earlier post I talked a bit about people just not getting it. There are different levels of misunderstandings. From very simple “I don’t understand” to people creating their own version of what lupus is to me in their heads vs. what is actually true. What I have failed to address is the people who I talk to who might “get it” but simply scurry on from the topic. Not because I’m talking about it with them all the time. Most days I am able to keep fairly quiet about things. For example, I might tell one of my trusted friends I need to sit down and talk to them about what’s going on. I might get a sentence out and I get a response of “That’s nice. Lets go watch T.V. Yeah my fingernail is hurting too.” One of two things is going on with this reply:

They don’t get it and don’t care. Time to let the friend go. I don’t have time or energy for friends who won’t give the support back I give them. Sorry. Really is the truth.

They don’t get it, are afraid, don’t know how to deal with it and their defense is to brush it off. Almost as if they are in a state of mild shock. Cope for them is to not confront the problem and shove it under the doormat. They would much rather live with the illusion of me being healthy even though the reality is I’m not. A real heart to heart can be necessary to drive the point across.

A few things I have to remember in talking to a dismissing friend or any friend in general. They don’t deal with a life altering illness every single day. No matter what they really will not be able to understand things past a certain level. Some people have never been around a sick person and do not feel comfortable around me or don’t know how to act. Finally, it’s scary to hear something isn’t right and can’t really be made right.

Nothing is really comparable from one illness to another. The pain I feel in my joints does not translate to the pain felt after having open-heart surgery and vice versa. Both hurt but the hurt is different. In trying to explain to the dismissing type, don’t compare pain for pain. Everyone feels pain differently and everyone deals with it differently. Closest I ever come to comparing lupus to something else is when I will say “I feel like I have the flu every single day.” But it’s not really comparing lupus to the flu.

When talking with a dismissive friend make sure there are no distractions. It is really hard to tune a person out if you make eye contact and speak clearly. Sometimes a wake up call is all that is needed to alert a friend of what is happening.

Good luck with the dismissers in life. They can run and hide but eventually reality will catch them.