Living with Lupus

5 Helpful Online Resources for Researching Lupus 

1. Molly's Fund

2. What Doctors Don't Tell You

3. Plant-Derived Medication

4. Lupus Research Institute

5. 75 Lupus Facts

I have included some alternative as well as traditional resources because I like to research both sides. Sometimes it's hard to determine who is right or wrong (especially when traditional vs. alternative views can differ dramatically on some Lupus topics such as treatments) but I think it's important for me to at least know what each side is saying, and then decide for myself what is best for me. 

However, if you are experiencing a major Lupus flare and you know it, my advice would be to follow the care of your rheumatologist until you can at least get the disease under control. 

14 DAY NO SODA CHALLENGE--UPDATE

I am doing great so far. I have had no headaches from coming off the caffeine and really have not had any major cravings for my beloved Pepsi!

I am still in the tale end of the third week of my no soda challenge but I think it's safe to say--I made it!!

Bye, bye soda!! (Except for once a week as my treat:))

If you are looking to kick the soda habit, here's the plan I used that worked great for me.....

14 Day No Soda Challenge (Week 3 Optional)

Week of March 23

Week	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday
1	Brkfst – normal Lunch – normal Dinner – Replace soda w/ caffeine free version	Brkfst – normal Lunch – normal Dinner – Replace soda w/ caffeine free version	Brkfst – normal Lunch – Replace soda w/ caffeine free Dinner – Replace soda w/ caffeine free	Brkfst – normal Lunch – Replace soda w/ caffeine free Dinner-Replace soda w/ caffeine free	Replace soda w/ caffeine free for all meals	Replace soda w/ caffeine free for all meals	Congrats! You are caffeine free! Now keep going!
2	Brkfst – Caffeine free soda Lunch – Caffeine free soda Dinner  - Replace caffeine free soda w/ juice	Brkfst – Caffeine free soda Lunch – Caffeine free soda Dinner  - Replace caffeine free soda w/ juice	Brkfst – Caffeine free soda Lunch – Replace caffeine free soda w/ juice Dinner – Replace caffeine free soda w/ juice	Brkfst – Caffeine free soda Lunch – Replace caffeine free soda w/ juice Dinner – Replace caffeine free soda w/ juice	Replace caffeine free soda w/ juice for all meals	Replace caffeine free soda w/ juice for all meals	Great job! You are now officially done with soda! Now keep going if you wish to add more water to your diet!
3	Brkfst – Juice Lunch – Juice Dinner – Replace juice w/ water	Brkfst – Juice Lunch – Juice Dinner – Replace juice w/ water	Brkfst – Juice Lunch – Replace juice w/ water Dinner – Replace juice w/ water	Brkfst – Juice Lunch – Replace juice w/ water Dinner – Replace juice w/ water	Replace juice w/ water for all meals	Replace juice w/ water for all meals	Awesome! You are now drinking plenty of water and no sugar! You should feel much better!

 Confession Time....I LOVE SODA!!

 Reality Time....SODA IS BAD FOR YOU!!

And for me, soda is really, really bad, because I have systemic lupus nephritis--meaning my kidneys are not the best anymore. 

So in order to try and take more control of this disease without all the toxic medications, I have decided it is high time to put an end to this soda addiction once and for all. 

I am giving myself 14 days to kick the habit! Here's my plan....

Supplies Needed.....

1. My favorite soda (Pepsi)

2. Caffeine free version of my favorite soda in the can (for some reason caffeine free is better in the can)

3. Juice (to replace the craving for soda)

14 Day No Soda Challenge (Week 3 Optional)

Week of March 23

Week	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday
1	Brkfst – normal Lunch – normal Dinner – Replace soda w/ caffeine free version	Brkfst – normal Lunch – normal Dinner – Replace soda w/ caffeine free version	Brkfst – normal Lunch – Replace soda w/ caffeine free Dinner – Replace soda w/ caffeine free	Brkfst – normal Lunch – Replace soda w/ caffeine free Dinner-Replace soda w/ caffeine free	Replace soda w/ caffeine free for all meals	Replace soda w/ caffeine free for all meals	Congrats! You are caffeine free! Now keep going!
2	Brkfst – Caffeine free soda Lunch – Caffeine free soda Dinner  - Replace caffeine free soda w/ juice	Brkfst – Caffeine free soda Lunch – Caffeine free soda Dinner  - Replace caffeine free soda w/ juice	Brkfst – Caffeine free soda Lunch – Replace caffeine free soda w/ juice Dinner – Replace caffeine free soda w/ juice	Brkfst – Caffeine free soda Lunch – Replace caffeine free soda w/ juice Dinner – Replace caffeine free soda w/ juice	Replace caffeine free soda w/ juice for all meals	Replace caffeine free soda w/ juice for all meals	Great job! You are now officially done with soda! Now keep going if you wish to add more water to your diet!
3	Brkfst – Juice Lunch – Juice Dinner – Replace juice w/ water	Brkfst – Juice Lunch – Juice Dinner – Replace juice w/ water	Brkfst – Juice Lunch – Replace juice w/ water Dinner – Replace juice w/ water	Brkfst – Juice Lunch – Replace juice w/ water Dinner – Replace juice w/ water	Replace juice w/ water for all meals	Replace juice w/ water for all meals	Awesome! You are now drinking plenty of water and no sugar! You should feel much better!

*****After completion, I plan on allowing myself one soda per week as a treat*****

When I say "normal" on my chart I mean the normal soda I would have for that meal. 

I plan on starting this challenge Monday, March 23. I will keep you updated on how it goes (I'm sure it won't be as easy as I planned) and if I feel a difference in my body once it's over. Until then....:)

My Hair Before Lupus

For anyone who has Lupus, hair loss is one of the many symptoms of the disease. For me, it was very hard to get used to this constant battle with hair loss. 

The picture above is my hair a few years before my diagnosis with Lupus. My hair was long, thick and full. Once the disease set in my hair began falling out in several strands daily, and then eventually it would come out in chunks. 

I have had to cut my hair extremely short (I'm talking like Pixie short) several times over the past ten years. This was very hard for me since I had always been used to long hair and felt long hair looked best on me. 

After every cut, it would take about two years or so to grow my hair back to its original length. However, the texture and fullness of my hair has never been the same since being diagnosed with Lupus. 

Recently, my hair had started to fall out in strands again. I decided to try a hair loss product to see if I could keep from having to drastically cut my hair again. 

I have been using a product called Nioxin for about a year now, and my hair loss has slowed dramatically. I still have a few strands coming out daily, but not the huge chunks like before. Also, the patches of hair that had already fallen out are now starting to grow back! 

Even with using this product, my hair will never be the thickness and fullness it was in the picture above. But I am glad I have found an alternative to the drastic Pixie cut. I now feel I can deal with the hair loss a little bit better. :)

I am the youngest of the three sisters on this blog and I was diagnosed with Lupus about 10 years ago. I was completely unaware that such a disease even existed at 21 years old. Needless to say, I learned a lot about it very quickly and have come to the conclusion it is a disease that even the doctors still do not fully understand. 

Beginning Symptoms of Lupus

I was fifteen years old and had come down with some sort of flu bug. Unfortunately, I just could not seem to get completely well again. My mother took me to the doctor, and they diagnosed me with a Urinary Tract Infection. I was given lots of antibiotics, plus a shot. Several weeks passed and I still was not recovering. 

I was losing weight very rapidly, which was not normal for me at all since I had been on the chubby side for most of my life, and sleeping constantly. I was taken back to the doctor. They ran a few blood tests and sent me immediately to a children's hospital. 

The doctors at the children's hospital ran multiple tests on me and came to the conclusion that I was not producing red blood cells. This prompted them to perform a bone marrow biopsy thinking I most likely had Leukemia. 

The biopsy was negative and they continued to run tests and administer several blood transfusions trying to diagnose me. 

They were never able to diagnose me, but they did introduce me to a favorite drug of choice for Lupus patients, prednisone. This "kick-started" my system and I began producing red blood cells again. 

After a few years of check ups, the doctors decided something abnormal had taken place and whatever it was the prednisone took care of it and I was now fine. WRONG-O!! 

More Symptoms of Lupus

Several years had passed since my incident. I was now in college, living on my own, and working as a server at a restaurant. 

I thought I was fine until I started to notice I was losing weight rather quickly and my appetite had decreased significantly. I could not finish any meal that I started or even consume half. 

My hair began to thin out noticeably and then began the intense pain. I would hurt so bad at night in my joints all throughout my body that I could not even move out of my bed. I could not reach for a glass of water or even adjust the covers on my bed. 

By the time I made it to morning, I was able to slowly get out of the bed and the pain would subside as I went throughout the day. 

This went on for several months. Then the pain became more intense and lasted longer into the day. It got to where I could not walk very well on my own or even open a car door. My hands were so stiff and in pain that I could not grasp anything. 

I was taken back to the doctor. After several tests and visits I was diagnosed with Lupus. I was then told by the doctors that the Lupus I had (commonly referred to as SLE) was rather aggressive and was targeting my kidneys. 

I was put on Prednisone and Immuran treatment. My extreme pain subsided almost immediately with these medications and that was a great relief to me. 

However, the side effects of both medications was now a little hard to deal with. The prednisone caused intense swelling and interrupted my sleep patterns. The Immuran caused extreme hair loss and I was forced to cut my hair very short. 

My Son

A year after I was diagnosed I found out I was pregnant and gave birth to my son. While I was pregnant I was so much better. I felt much healthier, almost normal, during my pregnancy. 

However, after I gave birth to my son the disease flared aggressively and attacked my kidneys. I was forced to take intravaneous chemotherapy treatments on a regular basis along with continuing high dose of prednisone (20 mg). 

During this time the doctors performed a kidney biopsy to determine the extent of damage. They said I was in stage four renal damage, which they assured me was pretty serious. So I continued the chemo treatments as well as high dose Prednisone for about a year and a half. 

I was growing increasingly frustrated with taking chemotherapy treatments to the point I had decided that I would rather let the Lupus takes it course than take another treatment. 

Fortunately, around this time my nephrologist made me aware of a new experimental drug and treatment for Lupus patients. It was a kidney transplant drug called Cellcept and it was administered in pill form with less harsh side effects. I absolutely agreed to try this new medication.

This new medication worked very well for me and I was much happier with the reduced side effects. The doctors then told me the Lupus was under control, but I needed to continue several medications to maintain.

Another Flare

Life goes on whether you have Lupus or not, and I ended up making a move to a different city during this time. For whatever reason, the Lupus flared again. 

I had to find new doctors in this much smaller city and start treatments again. I was able to find a rheumatologist who was willing to follow the treatments of my former specialists with Cellcept. 

I started Cellcept and high dose prednisone (up to 80 mg this time) again. I also started a supplement of Vitamin D and calcium.I had a bone density scan and discovered that the years of prednisone intake had caused osteopenia in my hip at 26 years old. 

By this time, I started to get really frustrated with taking prednisone and other medications every day multiple times a day. And I was frustrated with the harsh side effects. 

I continued these medications for awhile and eventually took myself off of Cellcept (which was now causing my white blood count to plummet and having to have injections to keep it normal) and Prednisone. 

Yes, I took myself off because my doctor was unwilling to discuss the possiblility of not having to take these the rest of my life. 

How I am Today

After becoming extremely frustrated with several doctors in the city  I live in now, I decided to take some control of my own treatment. First things first, I prayed and prayed and prayed and continue to pray. I would have never made it this far without God helping me to deal with this disease. 

It seemed to me that the medications I was taking would help for awhile but the side effects are so harsh and cause even more medical problems. 

I also took an inventory of my life and tried to pinpoint when my body would flare. The only thing I could come up with was my extremely busy schedule that I seemed to keep. I worked full time, went to school full time, and was a single mom. Needless to say, I have really slowed down. 

I have not seen a doctor or taking any medications for almost two years now. I have only been working a few hours a week, if at all, and taking a supplement very high in vitamin D every day. 

I am not healed nor am I claiming to be (although I believe someday I will be--Glory to God). I am doing so much better than I was 10 years ago and I am continuing to research and try different things to help my body heal. 

I wrote this post about my story with Lupus because I know it is a growing problem for women and I know how scary and frustrating it can be. When I was first diagnosed I didn't even know what the disease was or how it affected peoples lives. 

After doing my own research online it made me feel better to know I was not alone and that there was hope. 

I will continue to post updates about myself, things I have tried, and tips for continuing to Live with Lupus.