Monday, December 14, 2009

Second Round of Radiation Done!

Friday was my second round of radiation and I am praying every day that this is it. The doctor saw two lesions before we did this round so I really hope it worked. One of my dear friends lost her son on Thursday to a very bad accident, Please pray for Mary Ann. I love you and will do what ever I can to help you through this. She needs lots of prayers. I go back to the doctor on Friday for a CAT scan to see if everything is gone so wish me luck.

Friday, November 20, 2009

Sad Day!!!!

Well today I am sad!!! My good friend Ava is not going to be working with me anymore. She has started a photography business and is raising a 3 yr old so she can not have two full time jobs. I wish her the BEST of luck but I am going to miss seeing her every day! Don't forget me Ava. Love ya!

Tuesday, November 10, 2009

Results Day!

Well finally getting my eye sight back from the radiation. I have my appointment today to see if the lesion is gone or if I will have to have another round of radiation. The radiation was not as bad as I thought but loosing my eye sight for 5 days was scary. I pray every day this is gone and I can start to feel better. Thanks everyone for helping me through this difficult time.

Monday, October 26, 2009

Getting Better

Well went to the oncologist and it was good news and bad. The lesion is shrinking and it is about the size of quarter but it is still there. I cant complain because when I started chemo it was the size of an egg so it is working. I go back to have my test run on November 2nd so keep your fingers crossed.

Wednesday, October 14, 2009

It's Been Awhile!

Sorry its been awhile but things have been crazy. I go to the oncologist on the 19th and I am keeping my fingers crossed that she is going to tell me "no more chemo"! Everyone say a prayer. My body is just so tired and it is getting harder every day. I am TRYING my best not to complain because I know there is someone out there dealing with more than me. I want to thank everyone for your cards, calls and visits it means so much to me.

Thursday, October 1, 2009


I just love October I guess because Halloween is my favorite holiday! I am really hoping for colder weather. Going to be at the hospital all day tomorrow for another round of test. I think I should have my own wing there since I spend most of my time and all of my money there.

Friday, September 25, 2009

Doing Pretty Good!

The treatments are going better and I love my doctor she is so caring. I go back for all my test in a month and I have faith the lesion will be gone.

Wednesday, September 16, 2009

I am back!

I haven't been on in awhile things have been crazy!!!! I am going to a new oncologist and I love her. She wants to do 8 treatments and if the lesion is still there then she really wants to do radiation. I am very scared of radiation so I am praying hard that the chemo works. I have been blessed alot this month by several friends and it has really helped. I really didn't want people doing anything for me but it has meant alot to have people by my side.

Wednesday, September 2, 2009

Just a little information

24 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Lupus
2. I was diagnosed with it in the year: 1997
3. But I had symptoms since: 1990
4. The biggest adjustment I’ve had to make is: not being able to do so many things
5. Most people assume: I am lazy
6. The hardest part about mornings are: getting out of bed
7. My favorite medical TV show is: House
8. A gadget I couldn't’t live without is: cell phone
9. The hardest part about nights are: not sleeping
10. Each day I take 13 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: I would do it to stop taking so many pills
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: I don’t have a career I just have a job
14. The hardest thing to accept about my new reality has been: all the weight gain
15. Something I really miss doing since I was diagnosed is: being in the sun
16. A new hobby I have taken up since my diagnosis is: making cards
17. If I could have one day of feeling normal again I would: go to the beach
18. My illness has taught me: life is not fair
19. Want to know a secret? One thing people say that gets under my skin is: you don’t look sick
20. But I love it when people: listen/give a shoulder to cry one
21. My favorite motto, scripture, quote that gets me through tough times is: Life goes on
22. When someone is diagnosed I’d like to tell them: just have faith
23. The nicest thing someone did for me when I was not feeling well was: take me to the doctor:
24. The fact that you read this list makes me feel: important

Tuesday, August 25, 2009

chemo day!!!

It's been awhile since I got on and posted a message. Today is chemo day again but the chemo is alot stronger now. I have to have 4 treatments at full dose chemo to try to get the lesion gone. The doctor wants to do this or radiation and everyone that knows me knows I will not do radiation. Trying to keep my chin up good days and bad but I am very thankful that God is helping me through this.

Friday, August 14, 2009


Well the doctor's visit went good and bad! The lesion has shrunk but he doesnt want to stop the chemo until it is gone. I thank God every day for the lesion shrinking and my health getting better. Hope everyone has a great weekend.

Monday, August 10, 2009


Boy have things been crazy!!! Trying to work, have chemo treatments and an all day trip to the ER. It has been awhile since I have been able to get on. I am praying that this friday is the last day for chemo and maybe things will calm down.

Thursday, July 30, 2009

Wonderful Post!

I saw this post yesterday on my lupus support group and thought it was wonderful!!!

False friends are like our shadows, keeping close to us while we walk in the sunshine but leaving us the instant we cross into the shade.

Monday, July 27, 2009

What a week!

It was a crazy week. My dad had a heart attack on Thursday and was put in the hospital. Me and my sister spent all day with him on Friday and then I had to have my treatment at 3:00. Treatments are getting better I am just ready for them to be over. I was at the hospital all day on Saturday and then went home and rested that evening. I spent Sunday with my dad until noon and then my friend Crystal took me to her mom's house to cut my hair. The chemo is killing it so we chopped it all off. Then she took me for some dinner. I don't know what I would do without her. She comes over and checks on me, takes care of my dog and feeds me.

Tuesday, July 21, 2009

Tuesday Treatment Day!

The weekend went by so fast and here it is time for another treatment today. I cant wait! LOL. I think I am starting to handle the treatment better and all the side effects. I really am trying to get back out there in the world but I don't want to over do it. I just do little things around the house and then have to rest. I just wish things would get back to normal. Oh what I wouldn't do to just be able to pick up and go some where and not have to worry about this disease.

Friday, July 17, 2009

Its the Weekend!

Yeah it is the weekend. I know I have a treatment tonight but I am so looking forward to the weekend and resting. However I am still waiting on one of my friends to come by and clean my apartment!!! LOL. I really think my body is getting use to the chemo so it is getting easier. Hope everyone has a great weekend!

Wednesday, July 15, 2009

Hump Day!

Well yesterday was the doctors visit and it went okay. Doctor said there is little improvement but wants to keep the chemo treatments for one more month. I was upset because I am tired of being sick but if they are working I need to keep doing them. I also had an ultrasound of my spleen and gallbladder due to swelling. The doctor thinks it is due to the medicines but better to be safe than sorry.

Monday, July 13, 2009

Starting to feel better

The weekend went by fast. I was pretty sick Friday night and really started feeling better on Saturday. Well that was until I tried to go eat seafood! No chemo and seafood do not mix. So the rest of Saturday I was very sick. Sunday came and I was still sick and so very hungry. Well I found something that does go with chemo! Snow cones! One of my best friends Crystal called to see how I was doing and she went and brought me a snow cone. It really hit the spot.

Friday, July 10, 2009

When is it too much?

Things just are not getting better. I am just wondering when you stop listening to the doctors, stop taken treatments and just give up? When is it too much?

Monday, July 6, 2009

Just another Monday

Well the weekend went by fast. My treatment was Thursday, sick on Friday and started to feel better by Saturday. My sister came and stayed with me and took me to the movies. It was a good time. I am dreading tomorrow's treatment but am so glad that I only have three more to go. I have all my test run again on the 14th and will go from there.

Tuesday, June 30, 2009

Does it ever get any better.

Well the weekend came and went as usual treatment on Friday and sick all weekend. Then came Monday and the scare of my life. The doctors thought I might have a blood clot in my leg but it all turned out okay for now. I am on MORE medicine again but if it keeps me out of the hospital that is fine with me. I know that my faith is being tested but I am stronger than this disease.

Thursday, June 25, 2009

Good Days and Bad!

The past couple of days have been up and downs. I know there are lots of people out there losing there jobs and now it could be happening to me. I work in the oil and gas business and things are not doing to well. I am trying to keep my chin up but it is so scary and depressing. I am trying to get the chemo out of the way in case I lose my insurance. God help us all something has to give.

Tuesday, June 23, 2009

lesson from lupus now!

This was in my lupus now magazine and it really makes alot of sense. The lesson here is to cherish your loved ones and cherish your life. We get caught up in the struggles that life sometimes throws our way. We hold grudges against those we perceive as having wronged us. We stay stuck in situations that don't nurture our spirit. We play small for fear of failure or expectation. Be present with your loved ones. Let them know how much they mean to you. Forgive an old grudge, Eat a big piece of cake, Dance to loud music, Sleep Late, give and receive hugs, Watch a butterfly, play games and LIVE LIFE.

Friday, June 19, 2009

Finally Friday!

Yeah its Friday. I have another treatment tonight and praying I don't get sick. My apartment looks like a pig pen! I would love to have enough energy to clean, go to the store and do all my laundry but I don't. Then again I am sure someone wants to volunteer to do all of it for me! LOL.

Thursday, June 18, 2009

Is it the weekend yet?????

Things have been pretty stressful and I am doing my best to handle it. I pray every day for things to get better. (in the world, all the lay offs and my health) I really believe that if you have faith that things will work out!

Wednesday, June 17, 2009

The week is almost over!

The week is half way over and I am glad. The treatment last night went pretty good, I guess I am getting use to them. Then this morning I woke up and almost died!!!!! My pillow was covered in hair!!! I screamed and started crying. I guess you don't realize what can happen until it does. But hey I am sure that all my friends will go and donate their hair for me a wig! LOL.

Tuesday, June 16, 2009

Treatment Tuesday!

After spending all day at the hospital yesterday I find out I still have to have the chemo treatments for at least another month. I really had my hopes up that I would not have to have them, so it is kinda depressing. I still have faith that this is just a stepping stone in life and things are getting better.

Friday, June 12, 2009

The weekend is here!

Yes the weekend is here and time for another treatment! I go into the hospital on Monday for all day testing. (wish me luck) after the test he will determine if I have to have the chemo IV or take the chemo pills anymore. I have faith that tonight is my last treatment and I am on the way to remission. I want to thank all of you for following me on this journey and for all the help, advice and shoulders to cry on you have given me. Hope everyone has a great weekend!

Wednesday, June 10, 2009

Hump Day!

Its hump day so the week is almost over. I have my sixth treatment on Friday and then test all day at the hospital on Monday. Keep your fingers crossed that this is it. My body cant handle the chemo any more and my poor hair is just falling out in clumps. I am doing my best to keep my spirits up and want to thank all of you for checking on me, it really means alot!

Tuesday, June 9, 2009

Treatment Day!

Tuesday is here and its time for another treatment. I am really trying to keep a positive attitude before I go. It is very depressing to sit in a room full of people and be hooked up to an IV, then you start getting sick. (not a pretty picture) I am praying every day and trying to keep my chin up, believe me there are people out there with bigger problems than mine. The one thing that I have started doing every night before I go to bed is pray and reflect on the day (the good and bad parts of the day) I have to tell my self that once the day is over, it is over! So please every day tell someone that you love them every day!

Monday, June 8, 2009

Monday again!

Boy the weekend went by so fast. My treatment Friday went so much better this time. It is still not easy to get sick in front of a room full of people. I have met some great people during my treatments and it makes me really appreciate everything I have. Lupus is a bad disease to have but there are several people in my group that have cancer. Going through all this again makes you stop and smell the roses. We have our bad days but I have faith they will get better.

Friday, June 5, 2009

Its the weekend!

Yeah its friday! I have my treatment today at 5:00 pm and I am praying it goes well. I just am so tired of being sick all weekend. Hope everyone has a great weekend.

Thursday, June 4, 2009

Sometimes it's all up to you!

Sometimes you just have to decide to feel better. You carry on with your day as if you felt better. It doesn't always work, sometimes you end up overdoing it and in worse shape than you started, but a lot of times it helps to get up and going. While it is not all in your head, your attitude can go a long way towards making things better or worse.
That is what I did today and it did help some. I would say I was at about 75 percent today. It can be frustrating though! The good news is I am getting better at dealing with these things. Now it's time to bring on some good days!

Wednesday, June 3, 2009

Sick again!

Well started to feel better yesterday afternoon just in time for my treatment. I am sicker than a dog today. It is really depressing when you are taking medicines to make you better and you don't feel they are working. The doctor says since the medicine is a chemo type drug it will make you sick before it makes you better. I just have to pray and have faith that this is working.

Tuesday, June 2, 2009

Trying to keep my chin up!

Well my treatment on Friday went okay but got sick sunday night and ended up in the ER again on monday. I am doing better today just in time for my treatment tonight. I am really trying to keep my chin up but I am starting to wonder if the treatments are really helping.

Friday, May 29, 2009

Its the weekend!

Well the weekend is here and I am glad. I really need some rest. The IV treatments of the methotrexate is making me so sick. I just don't understand how a medicine to help you makes you sick. Hopefully by my next office visit my test results will be good and I can get off this medicine. Hope everyone has a great weekend!

Wednesday, May 27, 2009

Hump Day!

Well its Wednesday and I had my first IV of methotrexate last night. It went pretty good but I am so sick at my stomach. The smell of food is making me sick. Guess this is a good way to lose weight. LOL!!!! I don't want people to think that I want a pity party I just want people to understand what I am going through. Believe me there are some days I just want to throw in the towel and give up. I am doing my best to deal with this illness and get on with my life. I want to thank all of you that have been there for me in the good times and bad. Have a great day talk to you tomorrow.

Tuesday, May 26, 2009

Glad the weekends over!

Not too many normal people would say glad the weekends over, but if you spent your weekends like mine you would be saying it to! Friday nights are getting so bad with the side effects from the medicine I really want to stop taken it. I mean how can a medicine be helping you when after you take it you are throwing up for hours. I know alot of you don't understand what I am going through and I really wouldn't want you to see it. I tell you one thing it really makes you appreciate life alot more when you are going through something like this. I just want each and every one of you to know I am so grateful to have such good friends.

Friday, May 22, 2009

Its the weekend!

Yeah the weekend is here and it is going to be a long one. My trip to the doctor confirmed I have an ear infection, lymph node infection and swelling around my heart. Doctor put me on MORE medicine so should start feeling better soon. I am looking forward to the day when I am completely healed. Oh and Kris Allen is the new American Idol!!! I love Kris Allen.

Thursday, May 21, 2009


It doesnt matter someone can sneeze and I get sick. I hate having this disease. I pray every day for a cure and for me to go into remission.

Wednesday, May 20, 2009

Sick and Tired of being Sick and Tired

Woke up last night sicker than a dog. My lymph nodes are swollen and my throat is so sore. Don't think I have been around anyone sick but who knows. Its seems like when the wind blows I get sick. Waiting on the doctor to call me back or call me in some meds! Thank goodness it is Wednesday only two more days till the weekend! Yeah!!!!

Tuesday, May 19, 2009

My friend Ava Hill has a new website up please follow her:

When does it get easier!!!

I really wish I knew when it would get easier. I am really trying my best to beat this illness but then some days I want to give up. Don't get me wrong I don't want to have a "pity party" I just want to be normal. I want to get up in the morning and not be in pain, I want to be able to do normal things and not be in pain, I want to be able to go to sleep at night and not be in pain! I just want it to get better.

Monday, May 18, 2009

The Spoon Theory

This was written by a girl with Lupus to explain to her friends what it was like living with Lupus

The Spoon Theory
by Christine Miserandino

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".


Well the weekend has come and gone and I am still feeling weak from the medicine. I don't feel like I got enough rest over the weekend. I am just so tired of being "sick and tired" I want my old life back. The life where you didn't have to plan your day out to make sure you had enough energy. The life where I could go out with my friends and family and have a good time and not worry about paying for it the next day. I am not trying to have a "pity party" believe me I know I have it better than some, it's just that I want my life back.

Friday, May 15, 2009

Letters to people without Lupus!

Letter to people without Lupus

Having lupus means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about lupus and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy." When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, "Oh, you’re sounding better!" or "But, you look so healthy!" I am merely coping. I am sounding happy and trying to look "normal." If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of lupus.Thats what lupus does to you.

Please understand that lupus is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room.

Please don’t attack me when I’m ill by saying " You did it before" or "oh I know you can do this!" If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to "get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: "You just need to push yourself more, try harder." Lupus can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, lupus may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Lupus does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of lupus, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with lupus. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be "normal." I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

Friday 05/15/09

I am glad it is the weekend. Not looking forward to taken the methotrexate but looking forward to resting. I am really hoping the new medicines will help me sleep.


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