I spent the day today with my wonderful family. I don't have any children of my own but I do have a niece and two nephews (10, 8 and 3 years old) that mean the world to me.

My morning didn't start out so great as my neck pain and muscle soreness started on me late last night. I was up at 3am and had broken sleep the rest of the night. I gave up and stayed awake. I contemplated on cancelling my visit with the kids so I could spend the day laying on the couch, watching T.V., and resting....with a little bit of feeling-sorry-for-myself mixed in.

I'm so glad I didn't. I had a chance to see my youngest nephew to celebrate his 3rd birthday.  I walked in with a large Buzz Lightyear balloon in one hand and his birthday presents in another. His face lit up like a Christmas tree! He couldn't stop smiling and was chatting away as fast as his little mouth could go. He was so happy. Just seeing him and being in that moment with him melted my heart. I don't know what it is but there's magic in kids that can make all the negative things in life go away.  All afternoon, I felt no pain. I wasn't exhausted like I was earlier in the morning and I had some sort of "second wind". We had lunch together, I helped them with their Kumon, we made birthday cards and played in the snow.

As I drove home, I thought for sure my body would go back to the state it was in earlier in the morning but didn't. Instead, I felt energized...and happy.

I know it's not always easy raising kids but I can see how they are very much worth every effort. They truly are tiny blessings and I'm hoping one day God will bless me with children of my own.
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Winter is definitely here now! It's been bitter cold for the past couple of days and my body isn't a big fan. I work in the downtown area where parking is two city blocks from the building I work in. On a daily basis, wind, rain or shine, I am walking through it. I have Raynaud's. Raynaud's disease is a condition that causes some areas of the body to feel numb and cool in response to cold temperatures or stress.

In my case, my fingers and toes go numb, feel cold (most of the time) and change color (purple, white and red). The strange thing is that it doesn't have to be that cold outside for my Raynaud's to react. One time it was 65 degrees outside. It doesn't take long for my fingers or toes to start to react to the weather or stress. But it does take a longer time to warm back up again. So, prevention is key!

A couple of weeks ago, I bought a pair of boots that have been quite helpful with keeping my feet nice and toasty. They are also very comfortable! They are real sheepskin and I found these at a very reasonable price ($35). So I bought 2 pairs! I'm really loving how boots like these are in style now.

As for my hands, I make sure I wear warm gloves and at times I use those instant hand warmer packets. You can find them here.  There are also the reusable kind that you can find here.

Raynaud's can be a real pain in the butt and it can look alien-like when the colors in your skin start to change. But it is what it is and I was "blessed" with it so why not work with it <shrugging shoulders>.
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Living with a chronic illness, I noticed I have been more sensitive about what people say to me than I was during the time I was healthy (pre-diagnosis). I don't mean to be but sometimes I just can't help it. I don't believe anyone means any ill will. They just don't know what the best thing is for them to say to someone with a chronic illness.

I came across this today as I was online. It could be a nice guideline for those who do not know what it's like to live with a chronic illness.  I found it on http://www.publichealth.org/ and it was written by Susan Williams.

10 Commandments for Interacting with the Chronically Ill

1. Thou Shalt Not Imply That We Are Not Truly Ill.You will not convince us otherwise with remarks such as, “You LOOK good,” or “But you don’t LOOK sick.” Even if you meant them as compliments, we perceive those kind of statements as insults because they imply that you do not believe us.

2. Thou Shalt Not Imply That The Illness Can Be Easily Fixed.People with chronic illnesses are persistent, if nothing else. We hang on, day after day. We see countless doctors, take numerous medications, do endless research, and continue hoping that the answer is just around the next corner. So please do not insult us by delivering diagnoses, remedies, or comments such as, “Why don’t you just...” or “Have you tried...” or “You should....” If it truly were that simple, I assure you that we would have done it already. We are sick, not stupid.

3. Thou Shalt Not Imply That We Brought This On Ourselves.We did not choose to become ill, just as we do not choose to stay ill. Simply having a positive attitude is not going to solve our problem. One would never imply that a quadriplegic chose such a trial for themselves, or could get better “if they really wanted to”. Please afford chronically ill patients the same respect.

4. Thou Shalt Not Insult or Argue With Our Limitations or Behaviors.If people with chronic illnesses push ourselves too hard, we can suffer serious consequences. Most of us have developed coping mechanisms to help us survive, and it is cruel to expect us to do more than we are able. One chronically-ill woman I know was actually told, “I wish I could have the luxury of sleeping all day.” Believe me, we would much rather be out working, playing, spending time with loved ones, participating in normal activities.
“Sleeping all day” is not a luxury for us – it is a critical necessity, one that we must take in order to protect whatever remaining health we have. Perhaps it may help to think of it in terms of being one of the medications we need to take. If you wouldn’t think of denying a diabetic their insulin, then don’t think of denying the sufferer of a chronic illness their critical need, whether it is a mid-day nap, avoidance of certain foods or environmental factors, or something else.

5. Thou Shalt Not Imply That You Can Relate To What We Are Going Through.Unless you have a chronic illness of your own, you cannot possibly understand just how much suffering is happening. Of course you want to be compassionate and want to relate to people. But when you try to do this by telling a chronically-ill person that you are always tired too, it tends to make the person feel that you are minimizing their suffering. Try saying something more along the lines of, “This must be so hard for you,” or “I can’t imagine what you’re going through.” It really does make a difference to us.

6. Thou Shalt Be Mindful Of Other Family Members.
Chronic illness doesn’t just affect the person who has it, but the whole family as well. The trauma of the illness can evoke feelings of fear, depression, anger, and helplessness in all family members. The balance of family dynamics will most likely change, especially if it is a parent who is ill. The healthy spouse may end up taking on an overwhelming amount of responsibility, and even children will likely be involved in helping care for the ailing family member. Please keep these others in your thoughts as well, and make an effort to direct some special attention to them, without any mention of illness or disability.
Individual family members adjust in different ways and at different paces. All members might benefit from counseling to help handle the stress involved, and each family member also needs to have time to pursue their own individual interests. External support from friends, neighbors, extended family, religious institutions, and support groups may help ease some of the burden.

7. Thou Shalt Acknowledge Our Efforts and Celebrate Even Our Small Successes With Us.For the chronically ill, any day that we can accomplish a task, no matter how small, is a “good” day! Our lives are often measured in terms of doctor’s visits and lab work, and our “success” measured by a rise in Natural Killer cell counts in our blood, or actually completing an entire load of laundry in just one day. Please do not look at us as if we are joking when we share these celebratory moments with you. Celebrate with us, be happy with us, and do not kill the moment by announcing that you just completed the Ironman Triathlon in record time.

8. Thou Shalt Offer Thy Specific Help.There are so many ways to help -- the most difficult part is usually getting a chronically-ill person to accept that help. They do not want to feel like a “burden”. If you offer a vague, “Call me if I can help,” the call will probably never come. But if you are sincere, consider extending offers of specific help, such as a ride to a doctor’s appointment, or picking up a few groceries or the dry cleaning. These activities can be done in a way that does not add any extra burden to your own schedule. If you have to go to the grocery store for your own family, it really isn’t much extra work to grab an additional loaf of bread and jug of milk. If you have to swing by the post office, getting an extra roll of stamps or mailing an additional package isn’t much extra effort for you – but it can save a chronically-ill individual a lot of time, energy, and exacerbation of symptoms.

9. Thou Shalt Remember Important Events.I’m not just talking about birthdays and Christmas. A major doctor’s appointment, lab test, or new medication are all important events to the chronically-ill person. Try to sincerely ask, “How was your appointment? How did the lab test go? How’s your new medication?” The chronically-ill person will appreciate that you remembered, and that you cared enough to ask about it.

10. Thou Shalt Get To Know The Person Behind The Illness.The illness may be a part of us, but it’s not a part of who we ARE. We want to be known as more than “that sick person”. You may discover that we have a wickedly funny sense of humor, a creative imagination, musical talents, or any number of things that better describe who we are, and what we would rather be remembered for. (It makes for better gift ideas too -- rather than presenting us with yet another self-help book on the power of positive thinking, now you can give us a CD from our favorite singer or movie of our favorite actor instead.)
Most of all, please remember that the chronically-ill person is more than worthy of love, friendship, and support. Most chronically-ill people I know are the toughest nuts I have ever met. Indeed, I have come to believe that a chronic illness is not for wimps – rather, only the toughest of the tough can continually face the struggles of life while battling a debilitating disease. That kind of grit deserves nothing less than pure respect and admiration, even from our toughest critic -- ourselves.

Why does it always seem like when I'm finally feeling good, I get hit with more health issues? Without getting into detail, I found out today that I'm going to need treatment done to manage the effects of my immune system being so out of whack....again. Schedule a doctor's appointment. Check.

You'd think by now I'd get used to news like this. Sometimes I am. A lot of times, I kind of just expect it.  It's not always a bad thing though because when you expect things like this to happen, when they do, you're just more prepared for it. It would be silly for me to think that all my lupus problems are going to magically disappear one day.  But hey, one can always hope, right? Wishful thinking? Most definitely....but hopeful. 

It's days like this when I find myself looking back at my life before Lupus. I was so active...going to school, working, hanging out with family and friends, and trips and vacations.  I was a bundle of energy. I looked good, I felt good and I was really happy. I can't exactly pinpoint the last time I felt this way (the looking good & feeling good part). Sure I have a good day here and there but to actually feel that way for more than a day, I can't exactly remember. I long for those good days.

So when I feel like this, I try to do things that put a smile on my face. First, I turn on my iPod and put on Van Morrison's "Days Like This" song. Then I go through old photos and videos that make me laugh. Lately, it's been videos of my niece and nephews that do that. They are truly amazing kids and just being their fun, goofy selves, they help me to realize that life is full of good things.  I just have to be reminded of that sometimes. 

A picture from our trip to Mexico in 2008

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Yesterday, a friend of our family's passed away from a heart attack. It was very unexpected and sudden and she was only 53 years old.  It became a wake up call for another family member to finally call her doctor and make an appointment for a full physical. For the last few months, this family member had been experiencing a multitude of physical ailments including dizziness, lightheadedness, aches and pains, among other things. We all have been telling her to just call the doctor. But because of other things going on in life, calling the doctor became the bottom of her priority list.

Nothing irks me more than when people complain about not feeling well or some part of their body aching but doing nothing about it. Even hearing "I have to make a doctor's appointment for an annual physical" and not doing it bothers me.  I know I have my own physical ailments to worry about and I shouldn't let others' procrastination bother me but I can't help it. I'm talking about people I love and care about. Just as they want me to live a long and happy life, I want the same for them.

Because of my Lupus, it's normal to have to see my rheumatologist every 3 months for a check-up, even if I'm feeling well.  Most times I never make it 3 months before having to call my doctor because of something weird going on with my body or I'm calling one of my other doctors (pulmonologist, neurologist, etc.).  During the first couple of years of my diagnosis, I would have 3 or 4 doctors appointments (sometimes more) a month and a variety of tests each month also. I felt like my health was my other full time job. What I would give to only have to see one doctor a year!  Sure you may have to take a test here or there but compared to all the testing most Lupus patients (or anyone with a life-long illness) have to go through, a test here or there is a walk in the park.

So please, don't wait until something bad happens to realize that you have to take care of yourself.  Make the time to care for yourself and encourage others to do the same. 

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When you're faced with a diagnosis such as Lupus, the road to recovery can be very difficult. There is no cure and no single medication that can take the pain away so we're left with trying to work with medications that are used to treat other illnesses. Everyone's symptoms are different so treatment for one person can differ for someone else. Trying to find that balance can be very trying. For me, it took about a year and a half to find the right combination of medications. That year and a half felt like an eternity. Sometimes I had to wait for a couple months before the medications would start working. And because I was in a flare, it was difficult to tell what was contibuting to my quality of life. Was my activity level (stress, exercise, work, etc,) contributing to my recovery or making me worse? 

My husband saw all my ups and downs and offered a really good suggestion at that time.  He thought it would be a good idea to keep track of my symptoms, what I ate and what medications I was on. Great suggestion but unfortunately, I didn't start working on that suggestion until about a little over a year ago (I was diagnosed in May 2007). I was so overwhelmed at that time that adding something else that "I needed to be doing" was another project on its own. But in the long run, I listened and I created my Daily Log.

It was pretty simple at first.  I jotted down the basics on an Excel spreadsheet (i.e., what medications I was on, what symptoms I was having, what doctors told me and what I ate that day) and called it my Daily Log. Sounds great, right?  Well, it wasn't as organized as I wanted it to be but it was a start.

Recently, I started reading this book called Despite Lupus: How to Live Well with a Chronic Illness.  I didn't realize how helpful that book would be for me! Sara Gorman gives great advice about how to keep track of your daily life.

So with her help, I revamped my Daily Log. (Thank you Sara!).

Here is how mine looks today.

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I was on Methotrexate for almost 2 years and as of a month ago, I decided to try to see how I would do without it. Being on Methotrexate has done wonders for my joint pains but I have had some undesireable side effects (I'm not going to lie).

I think one of my biggest side effects that bothered me at first was the hair loss. Not everyone experiences this but if you do, it can be really hard on your self-esteem. I've always had thin, long hair and with layers, it always looked a little fuller. When I would flare, I wouldn't always feel like doing my hair so a lot of times it would just be up in a pony tail.  I never realized how much hair I lost from MTX until I would take my pony tail down. After some time, my hair went from semi-full to really, really thin. I'm sure it didn't help that at the time I started taking this medication my stress factor was really high with planning a wedding, work and a bazillion doctors appointments and tests. So, I learned to improvised. For my wedding, I got extensions and I do have to say that they ended up being a lot of fun! Then after the wedding, I cut my hair. It felt odd to have short hair but to my surprise, I received a ton of compliments! I still miss having my long locks but at least I can say that I braved a new hairstyle.

So now, I'm learning how to manage my body without the help of Methotrexate. I was told that I can experience a burst of joint pain and other symptoms.  Boy am I. I caught a virus that caused me to cough non-stop, I had a fever another time and lots more joint pain.  I'm hoping that this is only temporary as a result of my body adjusting to the discontinuation of the medication. In the meantime, I'm going to help my body heal by eating better and getting more rest (despite the holidays stressors). If this helps, maybe in turn, my experience can help others facing the same challenge.
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When you live with lupus, everything about you gets tested, physically and emotionally.  I can't tell you how many physical tests I've had through the last 4 years.  There were MRI's, PFT's, chest x-rays, echocardiograms, CT Scans, a thoracenthesis, a spinal tap, a heart catherization, and the never ending plethora of blood work. The list is never ending.  I felt like a human pin cushion!  The toll all the testing took on me through the years was immeasurable. I wasn't the same person I was before.  At times I couldn't walk, I had lost the majority of my hair because of a medication that was helping me with some of my other lupus symptoms, bedridden because of fevers...so many to count.

With all of that being said, I really have come a long way. I realized that all the testing was for the good of my health and I survived all of them. Today, I'm able to walk, I've tried a new hairstyle, and I'm slowly getting myself back to a life that is more manageable.  The process of getting back to good health takes time and a lot of patience. I try to remind myself of that everyday, especially when "weird" things are happening to my body.

Here are some common tests performed on Lupus patients:
* Chest x-ray
* CT Scans
* Echocardiograph
* Electrocardiogram (ECG)
* Electroencephalogram (EEG)
* Electromyogram (EMG)
* Lumbar Puncture (Spinal Tap)
* Muscle Biopsy
* Pulmonary Funtion Test (PFT)
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