Archive | July 2011

Journal

I was reading Mutiny on the Body and they had a great posts about doctors visits. One thing they mentioned was to keep a journal. This is the best idea and something I have been doing for about a year now. If it wasn’t for my journal I’d be lost!

I use post-it tabs to find the sections easily

Here is what I keep in mine:

Diagnosis – I don’t remember half of what is wrong with me unless it is bothering me at the time. I put it all in this section with the dates of when I was diagnosed.

Tests – The doctors always want to know when you had and MRI or x-ray. I keep a record of the type of test, the date and where I had it so if they need the results they know where to find it.

Surgeries – I’ve only had a few simple ones so this one is easy. Remembering the dates is not!

Medications – I keep my list of all my meds that I’m on with the dosage and the date I started them. If I go off that med I just put an “X” by it. This way I know what I have tried, what worked and didn’t work.

Doctors – It’s much easier having all my doctor information in place. It makes it so much easier to make appointments or get my referrals.

Allergies – As I’m getting older this list has gotten a tiny bit larger. It seems I’m developing allergies to things that I have taken all my life.

Appointments – This part is a life saver!!! I keep all my appointments here so I don’t forget and check them off when I’ve gone.

Family History – This is great when visiting a new doctor.

Diary – I keep this part so I know when something started and how bad it was on certain days. The doctors always want to know specifics. Gosh!

Keeping my journal has made life so much easier. I carry it to every doctors appointment that I have. I don’t have to keep up with appointment cards any more. The best part is when I am seeing a new doctor I have everything in one place when I have to fill out all the forms! It is also a great tool if there is an emergency. You family or friends will have all your information for the doctors. The last thing we need is stress in our lives and a journal helps cut out a little bit more. 🙂

Do you keep a journal? If so what do you put in yours?

Have a wonderful weekend!!!

The Spoon Theory

I found this story soon after I was diagnosed. It has become a great way to get people to understand what it’s like to go through a flare up. If you have an illness you will be able to identify if not it might help you realize what someone in your life is going through that does. I’ve found that there are many people in my life that just don’t understand.

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”.

10%

I did it! I lost my first 10% of my body weight! I know weight is an important factor in staying healthy. I joined Weight Watchers Online earlier this year. I know I don’t have a lot to lose, but I didn’t want to get to the point where I did have a lot to lose and be that much harder to lose the weight. I have lost 16 pounds now!

I know the next 15 pounds will be harder to lose. I guess I should throw in some exercise. I’m just horrible at it! LOL! The longest I ever managed to work out was for two weeks. I felt good while I was doing it and didn’t push myself, but I tend to just stop. I can’t remember if I went into a flare or not. I do my house work and work in the yard a lot. I try to stay active when I feel good. I have to make up for the time when I’m stuck in bed and can’t do anything!

Well, either way. I’m going to TRY to toss in some exercise so I can at least firm up my body.

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By the way, I love comments! Don’t be afraid to say something if you want. 🙂 I am happy to know that I have stalkers so I know people might be learning something from me or realizing that they aren’t much different from me. I’d also like to meet you! Introduce yourself. If you also have a blog I’d love to read it!

Have a wonderful day today!!!

World Sjogren’s Day

Today is World Sjogren’s Day! Please take the time to learn about Sjogren’s Syndrome. There is a chance that someone you know has it and has not been diagnosed with it. It takes an average of 7 years to be diagnosed. In the meantime you are going from doctor to doctor and eventually you start to think you may be a little crazy and the doctors are looking at you like you are! It’s frustrating when you can’t figure out what is wrong when you know something IS wrong!!!

Finding out that I had Sjogren’s was a relief at first. I finally knew that I wasn’t crazy! There was something wrong with me! Then my next thought was “Huh… I don’t think I’m supposed to be happy about this!” The good thing is that most of the symptoms can be treated. You just have to keep trying until you find the correct treatment for you. When it comes to Sjogren’s no one is ever the same. What is true for you may not be true for someone else. It takes much trial and error, but there is hope.

If you think you or someone you know might have Sjogren’s then please look into it further. It could change their life to finally know what is wrong with them and be able to start a treatment plan that will help them.

Check out Defy the Dry and the Sjogren’s Syndrome Foundation to learn more!

 

Migraines

Well, I went to the Neurologist this week and he tested me for neuropathy and I don’t have it! I do have cubital tunnel syndrome which is similar to carpal tunnel, but in the elbow. He said it’s mild and I just need to try not to lean on my elbows. Ugh, I’m a leaner! I have been my whole life. It’s a good thing my parents weren’t a “get your elbows off the table” kind of parents. Or maybe it’s a bad thing. Do I have them to blame for this problem? I think so! LOL! I guess I should start being one of those parents so my kids can have the chance to escape this syndrome! 🙂

He gave me a new medication for the migraines and it worked! After 6 days with a splitting headache I am free! It didn’t make me feel sleepy or loopy. This is the best news! I’m trying to get a new job and I don’t want to have to deal with migraines! In the past I just went to work and put on my happy face even though my head was throbbing. I pushed through the day and nobody had a clue unless I told them. I’m good like that.

Along with the disappearance of my migraines my Sjogren’s flare is over. Happy dance!!! It was a small one since I’m on the Cymbalta. Between these two new meds I’m like a new person. It is a wonderful feeling!

Have a wonderful day!!! 🙂

Vegi Garden Update

The garden has been doing well, sort of. The plants are all huge! The bell pepper and banana peppers are doing great. The squash has put out a few, but it’s has a bunch of little ones on it now. The cucumber isn’t doing to bad. Still kind of small, but it’s trying and puts out one or two a week.

The tomatoes… well, I’m not sure about them. The were doing great, then the leaves started turning yellow, getting brown spots and shriveling up. I have tried pulling them off, but more turn. It seems to be doing a little better now. They are producing tomatoes like crazy, but they are splitting and getting bad spots on them before they even ripen. I tried taking them off early to ripen in the window but I’m still getting the bad spots on them within a day or so. Any ideas from the seasoned gardeners out there?

John, Mara, and Super Zucchini!

My zucchini has been doing extremely well as you can see from the picture above. I feel like I have to check it every hour or one of them will turn into super zucchini again! I have had a few try. Lately it is starting to wilt as you can see in the picture below. I’m not sure what is going on with it. It may be that they are planted to close or it has a disease. I hate to think that any of my plants have a disease after all the work we put into the garden. It says that we can’t plant the same thing there for like 3 years if we do!!! Is my garden doomed?

Garden

In this next picture you can see my watermelon if you look close. It’s that green round thing. See it? See it? I’m so excited! At the last-minute after the garden was planted I bought it. It sat in its sad little container for weeks and almost died while I was trying to decide where to put it. Finally I stuck it in the 3×3 empty space in the garden. Hmmmm… turns out it needs a lot more room! It has wound its way all around the garden and at last check I had 3 baby watermelons growing on it! Yippy!

Watermelon

I’m thinking next year I need to expand the garden.

Favorites

Here are a few of my favorite everyday items that I use.

Since Sjogren’s pretty much makes your body shrivel up you have to fight it! LOL! One of my problems is a very dry mouth. Since I don’t produce the saliva needed I have trouble eating and swallowing. I drink a lot to try to relieve the dryness. I have a hard time with anything that is spicy since I don’t have anything to wash it away. This also means tooth paste and mouth wash. Regular toothpaste and mouthwash makes my mouth hurt so bad that I can’t use them at all. Most people get a minty fresh feeling after using them. For me my mouth is in pain and it’s almost like a very sour taste. Sour does not = a fresh mouth at all!

I was using a Biotene Mouthwash. It did an OK job. Recently ACT came out with a new Total Care Rinse for Dry Mouth. It also has fluoride in it to help with my teeth. The ACT tastes great and even leaves my mouth feeling moist for a little bit.

ACT Total Care Rinse for Dry Mouth

Since we don’t produce saliva correctly we don’t have anything to wash away the food in our mouths. Many Sjogren’s patients have bad teeth due to this. So far I have been lucky. From reading it seems that most of them really start having problems in their late 30’s to 40’s. I’m trying my best to keep my teeth! 🙂

My toothpaste of choice is Biotene. It is a dry mouth toothpaste. They came out with the Gentle Mint Gel. This is the one that leaves my mouth feeling the freshest. They have one or two other flavors, but they tend to leave me feeling like I didn’t brush my teeth. Again, this toothpaste doesn’t burn my mouth!

Biotene

Dry eyes are another huge problem. I have to put drops in everyday. My eyes always feel like something is in them. Without the moisture in them the lid just rubs on the eye and can be very painful and if you don’t use drops it can cause damage to your eye. My eyes aren’t as bad as they can be yet. My left eye produces almost no tears at all. My right eye produces a little more, but not much more.

Night time is always hard. More so when I am in a flare. I wake up multiple times a night with my eyelids stuck to my eye. I have to pry them open and put in my gel. The GenTeal Severe Dry Eye Relief is what I have been using. Since I started using it I don’t wake up as often. It does make it a little hard to see so if you play Solitaire on your phone to fall asleep like me you might want to wait to put it in. 🙂

GenTeal Gel

During the day I use Refresh Optive. It feels good on my eyes and it doesn’t burn them. Some of the drops out there burn a little when I put them in.

Refresh Optive

Dry skin is another problem. All of our moisture glands are messed up! Our bodies attack them. I’ve tried explaining to my body that I need those moisture glands, but it just doesn’t get it. Oh well, what’s a girl to do?

On that thought. My face is very sensitive. I’m allergic to many lotions and most of the other ones make me break out like a teenager!  For the breakouts I use Fincea. It works great and doesn’t over dry my skin out. Back to lotions… My daytime lotion of choice is Aveeno Ultra Calming Moisturizer with SPF 15. I have tried others but I start breaking out right away. This one helps me get through the dry times. This past winter I didn’t have any painful dry spots on my face.

Aveeno Ultra Calming Moisturizer

At night I use Garnier Moisture Rescue Refreshing Gel-Cream. This makes my face feel great! I noticed a difference after a few weeks. My skin was softer and looked much smoother. It says to use it day and night, but it doesn’t have SPF in it so I still use the Aveeno during the day.

Garnier Moisture Rescue Refreshing Gel

At night I also put petroleum jelly all around my eyes. It helps keep in the moisture better at night. It also moisturizes around your eyes.

Petroleum Jelly

That’s all for now. If you have a great product that you us let me know. I’m always willing to try out something different if it will be a bigger improvement! I’m always looking for ways to “Defy the Dry”!