Monday, October 19, 2009

Bad day in the ER

I spent the day in the Emergency Room Sunday. Severe chest pains, throwing up, abdominal pains. Since I have that aortic aneurysm below my heart, they took me on back. It seemed to be fine, but all the symptoms lead to it. My white blood count was way through the roof. I had chostocondritis, inflamed ribs. Every one was so inflamed it felt as though I was having a heart attack. Connected to lupus flare. I just can't seem to stop being sick lately. Since I moved, I came down with swine flu two days after, severe lupus flares for two weeks and now the chosto. Sent me home with MORE meds! Just what I needed.
As always, the ER was a bad experience. Wish they would understand the word "emergency." Lingered in the triage room while two nurses were talking about other things. One was teaching the other. Asked for my meds list and realized I didn't have it. Told them I have Medic Alert and my number was on this bracelet. Offered her the info. No one ever asked for my meds again.
After asking a hundred questions, hooked me up to machines, took an x-ray of my chest, brought me back and left. No one came in for two hours. Had to ask the nurse to get a doctor. Begged for pain meds. Finally after four more hours, pain meds came. My heart monitor kept going off as "ahrithmia". No one ever came in to check it. I asked a nurse, who finally brought pain meds, why no one was checking it. He didn't say a word. No one ever explained what was going on, I had to ask for test results before I left, and this was the clincher of all. Doctor said I had a through the roof white blood count. Asked if I had a possible kidney infection. I told him I had systemic lupus. He replied, "Well, Duh! That's what is causing all of this."
When doctor said I could have ice, I asked for it. He wrote the request on the chart. Had to beg twice for it before they brought it in an hour or so later. The second time, Sandy's sister went out and bought a large cup of ice. I had asked nurses station twice within the two hours and they never responded. I know it may sound petty, but when you're strapped down with things hooked up to you in extreme pain, the least they could do it bring you a cup of ice.
I would have stayed later if I hadn't reached the point of being tired of sitting up in a bed with no one doing anything. I could hurt at home as much as there. I called and told them I want to go home. He came in and said he'd sign the papers. That's when I asked what the test results were. I could barely stand up to get in the wheelchair when leaving.
This is suppose to be the GOOD hospital of the two in Dothan. So if you're having chest pains and sick sick sick, call an ambulance. You'll have a better chance.
I sat up for hours last night because it hurt to lie down. I'm breathing some better, but the pain is still intense. Can only keep down liquids, too. Will be a long haul.

Friday, October 16, 2009

Cold Snap

Today it was in the 60's. Tonight it is in the 40's - my kind of weather!! Was all set to put a blanket on the bed, but found out I didn't need one. When I walked back inside my place tonight, it was so warm and snug without heat. I thank God for that! The old place would be freezing tonight.

I'm thankful for a new place to live, especially now that winter is coming.

Thursday, October 15, 2009

LIVING IN DOTHAN, AL

Rode by the old place on Laurel the other day. Seems they are gutting the place. There was wood and debris everywhere on the front lawn. They needed to rip out so much, get rid of the mold, and rewire the whole place. Hope they do the latter.

Upsets me that they did nothing while I lived there. I had to live among the floors falling in, ceiling falling down on me, bad wiring, extreme mold in the bathroom, no insulation, bad air/heat unit always breaking down, among so much more. Ten years of it. It reached the point I had to beg for someone to fix the broken pipes underneath the place twice. Why?! There's no excuse for it.

Landlord has over 30 properties, but is bad about keeping them up. Sad to know he's on a top committee in the Dothan government.

Noticed two new vehicles were in front of the other side. Seems the woman who smoked me out of there has moved already and someone else has moved in. She lasted about four months. I'm thankful I moved though. It would always be the same. I'd never know who would move in (i.e. the drug addict two years ago). Never felt safe after that.


I know you reap what you sow, but I surely would like to see the reaping. I'm never there to see it happen.

LIVING IN DOTHAN

I've lived in Dothan for a long long time. Moved here after I returned from KY (college) and worked here. My self esteen has taken such a beating over the years that I don't feel like I'm alive anymore. The people here are so society/class oriented yet claim to be devout Christians. The two don't go together.

Every job I've had over the years has been an experience. My teaching years were wonderful with the kids. I loved them. The parents....well, most were typical.

If you ever want to lose your self esteem altogether, work in a church. I did twice. The society/class people are members of the churches. They step on you very hard. My second church job involved two ministers who single handedly made me feel like a nothing.

Living in a quiet neighborhood in the Historic district was needed, but I couldn't stand the neighbors after a few years. I lived next door to an obsessed animal hating preacher. He was a manipulator and did all he could to destroy me because I stood up to him and wouldn't let him walk all over me. He's one I want to see "You reap what you sow."

The woman on the corner was the neighborhood gossip. Retired elementary teacher, she didn't have much to do except stay in other's affairs. Teamed up with the preacher, they did a lot of damage.

The neighbors behind me never associated with me until the woman came over to ask me not to feed the cat in my backyard. When she stepped inside, you'd think she had stepped into a void of poverty. I've never been so disgusted with neighbors.

Christmas and Thanksgiving came and went. No one knocked on my door to even wish me a good holiday. They knew my family had all died and I was alone in the world. They just didn't care. I did wish them happy holidays. I did make the effort.

I never bothered anyone. Stayed inside or in the backyard most of the time. Spoke when I was spoken to. Never bothered a soul. Yet, I was literally destroyed in this neighborhood, a place where they didn't even associate with each other. I was so afraid I'd pass out in the yard and be left there till someone else passed by the road and called for help.

If you know someone planning to move to Dothan, AL , I'd advice not to. If you are high society minded, come on. It is a perfect place for you. Southern hospitality is a myth here.

I am so very thankful to the handful of people who have been kind to me. They are the treasures here.

If I could afford to move out of this town, out of this state, I'd do it in a heartbeat. But I'm stuck among the muck. I'll never understand why.

Saturday, October 3, 2009

A new Quote

"How can you go through life and not help those in need?" unknown

Do Dreams Still Come true?

Each new day I am so thankful to be able to get out of bed. So many days I can't because of the extreme flares of systemic lupus. The more years that pass, the more extreme the pain. I am very thankful to stand in a shower (when I can) and not take it for granted. When you're sick, you become more thankful for things you never thought about before. Even though all of my family, mom, dad, only brother, grandparents, aunts and uncles, have passed away, I am thankful for my best friend. God sent an angel when He sent her. How I wish I were able to do something special to thank her for always sticking by me and being there when I needed her.

I use to dream all of the time. Dreams and much prayer opened the door for me to go to college and work my way through (hard to pay for it on your own). That diploma is like gold to me. First person to graduate from college in my family. My mother was able to hold that diploma in her hands before she passed away. I will never forget that moment.

When you're sick, money is hard to come by. Tons of meds cost so much, doctors, extremely fixed income. Hard to make it month to month on $700.00 when your rent is over $400.00. So you juggle meds, food, turn off electricity and sit in the dark. I love candles.

I still dream about going back to school to get my master's degree, something I long to do before I die. As always, the wall of no finance stands between me and that degree. I've dreamed of a masters in psychology so that I can help others and make a real difference in someone's life. It also opens a door for me to be able to control work hours.

I've always wanted to teach in a college, but lack the master's degree to do so. I miss teaching. It was the most beautiful experience of my life. Each day was different and I asked God every morning to please use me as His vessel to make a difference in the lives He put in my hands. I saw and experienced so much of His love when I was a teacher. I miss the purpose in my life, the purpose that was focused on young lives who needed someone to believe in them, to listen and to care.

Do dreams still come true? I hope and pray this one will for me some day. I pray that wall of cost and lack of funds will fall and allow me to go forward with His plan for my life.

Thursday, October 1, 2009

LOVE the Cool air

It is 71 degrees at 11:00 a.m. I love the cooler air. However, the weather change really hurts. I've been in extreme pain for the past three days. Even my hair hurts!! So no sleep....which results in more lupus flares. It is like knocking down dominoes. One event affects another. Still, I'll take the cooler air anytime!

Ever wonder what it is like to live with a debilitating disease like Lupus? Here's a good description:

 
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".

© 2003 by Christine Miserandino Butyoudontlooksick.com
Please note that this story is copyrighted and should not be reprinted in any form without permission from the author. Feel free link to "The Spoon Theory" at www.butyoudontlooksick.com/the_spoon_theory - Thank you