OMG! Good news!!

So I went to the doctor today. I don't have insurance. He gives a discount if you pay at the visit. Of course I take that! Anyways, he asks how I am and I rattle off the list of ailments that I am there for. After an exam, he says I have a bit of pleurisy. That is a swelling of the bi-layer sack that surrounds the lungs. The swelling causes the two layers, which usually have a fluid lubricant between them, to rub and causes pain while breathing. It is caused by the lupus attacking the lungs. SO... I got a cortisone shot. And we'll see.

THEN...

I GET MY INSURANCE BACK!!!

For some reason, a girl crying on the phone that she will die if she doesn't get her medicine and has no way to pay for it doesn't cause anyone to do anything. BUT a big pharmacy can call the same people and get it reinstated. huh?!? But it worked.

Spoons

It is a rainy day. I spent the afternoon with Carson, since he was out of town for his birthday. It was nice!. I also spent the afternoon not feeling well. I hurt (yay weather!!) and I can't breathe. I go to doctor tomorrow with news that my chest hurts and I am short of breath. I will go to a friends house this evening to hang out. Now I know, "don't over do it!" and I won't. But I need this. I need the chance to feel semi normal.

This is my problem lately. I want to be me, but I want to be more, I want to be fine. I want to, oh I don't know. At lunch today the waitress asked me "do you want to start with a delicious margarita?" Why can't I say "Why, yes I would!". I am angry today. I am supposed to go to school, have a career, go to a party now and then, spend time in the sun. And I wonder... am I strong enough for what is coming? A lot of people have confidence in me, and a lot say that I am strong. I look at my cousin who died not long ago. He was strong in a lot of ways. Yet he was scared too.

I am sorry. I feel like I have just been complaining lately. I don't mean to. I am trying to be honest to everyone about how I am feeling. The "strong" insides I have tell me that I am weak.

Just a reminder for those I care about. This is a VERY good analogy to how I am. I know some have read it, and I am sorry I repeat myself! But those who haven't read it.. you should! It is great.


The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

To the Dad's

Happy Father's Day!! I hope all of you fathers realize just how special you are. Today I am spending the day with Dan, and Joe. Then Grandad and Grandpa are coming over for dinner and ice cream. I wish I could see my Daddy today, but I will get to see him again soon.

Yesterday Tami took me out to Fruita to take some pictures! It was awesome, and it meant so much to me! Amber went too, and we ate at Qdoba.

Because of the storms the other day, in cahoots with the stress of last weekend, my lupus has been playing with me. I have been fairly sore, and I have a rash on my face. Ryan said that you can't see the rash. But Juddah asked a great question last week, and I need to ask it of my nurse. What does active lupus mean in terms of my hypertension? If you think logically (and a bit dramatically), lupus causes inflammation. Inflammation causes scarring, and damage, to my pulmonary arteries. BUT that is only if the inflammation of lupus IS occuring in my lungs. How do I know if it is? Well, I don't know!! I didn't know it was attaking my lungs in the first place until I was about dead!

Well, if not a little too early... it is a gorgeous morning! The clouds are reflecting the light in an amazing way, and the colors!! As well as being Father's Day, it is also my Grandpa's birthday, the first day of summer, and the ever important Summer Solstice!

I have a large number of dads in my life. My dad, stepdad, grandpas... and of course Duane. Happy father's day!! I love you all!!!

Insurance

I didn't say anything earlier because I didn't want to freak anyone out. But now it is mostly resolved, so I can tell you. I lost my insurance as of May 1. Apparently my insurance company didn't receive my May premium. Since I sent it via regular post, I don't have any proof, and they will not reinstate me.

Now remember, I said you didn't need to freak out. Here's why. I called CuraScript (they supply my Remodulin) and told them. I called Caring Voice (they help me with my premiums), they are looking into what they can do. I called my nurse, and she said no matter what, my Dr won't drop me, and I will still get my medicine. So... breathe. I had to.

My mom took care of the last part. She called RMHMO and they denied me. But they did give her information about CoverColorado.org . So today was the deadline to apply for coverage beginning July 1. I got everything in. Thank you Momma!! I love you. And we can not worry.

We were scared. If I can't pay for my medicine, how can I get it? And my doctor!! They like to get paid too!! There is no way! There is no way I can pay for the months of May and June, but I will live. Sondra was wonderful, my nurse. She said, "as long as it is just financial, there is always away." She reminded me that it will be tough, but that I will be just fine. Thank you Sondra, you are definitely one of my angels!!

My friend Ryan asked me tonight if I was not writing about it because I didn't want to worry you all, and I told him that was correct. So then I felt guilty that I didn't say anything. But I needed to wait. And I am letting you know now. If things were different, I would be saying help! But I don't need to say that right now. I do, however, want to keep you in the loop!

And again... thank you to all of my angels. I somehow get put through the ringer, but you get me through it safely.

No River

So I thought that everyone would appreciate an update. The last post was pretty depressed. I am still the same, with mainly the same feelings. But I don't want anyone to worry. I will, as always, get through it. I am not so bad that bad things will happen. I think it is normal for someone in my situation to have these feelings every now and then. I am still an upbeat and positive person... but a lot of negative (which is what my health is) is grating and can really get to you after a while. I will get happy again, don't you worry about that.

I haven't been sleeping well.. I hope to change that tonight. Don't know for sure what all I am going to do with myself tomorrow, but I hope I have the energy for it. I am going to bed now. I didn't get to sleep last night until 530 am!! and I had to then get up for a funeral at 830 am! So I am tired. hopefully it will work for me to go to sleep.

Anyways, the point of this was to reassure you all that I am ok. And that I am not going to be doing anything stupid. I just have a negative and morbid mind right now.

Cry Me a River

I have been in a weird mood for a few days now, and I am not exactly sure why.

On Saturday, I found out that my cousin that has terminal cancer was close to the end. I didn't think it bothered me. But I wanted to see him. I felt a need to. I wasn't able to and Yesterday morning he passed away. I am not sure how old he was, like between 35 and 39 I think. Anyways, too young. It hit close to home.

I couldn't help but think that soon that will be me. I really do try hard not to dwell on this fact. I mean, everyone is going to die. But most people get the pleasure of not having to think about it because it is YEARS down the road... or just an inevitable something that they don't have to deal with yet. And I know that I will be here long enough that things can be developed that will save my life. I have to be realistic, and I think those around me who care about me have to as well. It is unlikely that a drug will be developed to make this go away... and I don't want to live forever with this.

And then on top of it all I was focusing on everything I can't do that I want to do. There is a lot that I would like to do. I can drive (yay!!!) but sometimes I still feel that I am locked away in my room. I was talking with my friend, Ryan, today. And I would love to go to Glenwood Springs, or Ouray and just walk around. Spend a leisurely day enjoying summer. Or hike Devil's Kitchen Trail, I have never done that. Go horse back riding (that is actually a lot of work) anywhere. Go camping! Rafting! Just be able to be a 25 year old girl with no cares, just enjoying the state she is in. But those are the things I can't do. And I know it isn't healthy to dwell on that, but rather I need to focus on what I can do. But I want to see you try to do that all of the time.

I do realize just how lucky I am. I have the best family in the world. And that is not just my relatives. It is all those people I have that love me, and are there for me. The ones reading this and the ones that would if they could. I know how great it all is. I know how lucky I am to have the doctors that I do, to have the insurance I do, and to be in the position I am in. But sometimes... I wish I could just be a stupid, young adult. Make those mistakes I am supposed to be making. (get a tattoo!!) I guess maybe my next life is when I will get to do all of that.

Here's hoping!!

Update

So, the doctor did blood tests, and I have no infection! Mom and I kind of thing that I just overdid it when Dad was here. Mom reminded me that as I get sicker, it is going to take longer to recover. That just sucks. It took me 7 days to recover to the point where I wasn't feeling like shit. I am still sleeping 14 hours a day, but I am not sick anymore. If this is going to get worse (and it is), that is going to be what sucks. I am doing fine with everything else... but why can't I do what I want to when my Dad comes to visit?

New Month

So June is here! That means I have been living with this for 6 months. Man, time moves along swiftly!

Mom has been concerned the past few days. Since my dad left I have been very fatigued, requiring 14 or more hours of sleep each day. And I still don't have a lot of energy!! Well, yesterday I had a low grade fever and started a lupus flare. So I called my nurse. She wants me to go in to my primary care, as I might have an infection in my line. I hope not! I go to Dr Terry this afternoon, and will update this when I know more.