Thursday, October 11, 2012

October Update

I really wish I would use this blog for an outlet more often, but I haven't.  Maybe some day I will remember that I can post this stuff and free it from my brain.  So here is the update...
I had my infusion in July with no signs of improvement.  I went through summer fighting my lupus, watching everything that I did and taking every step with caution.

I met with my doctor in August and she said that because it took 3-4 infusions for it to start working I should wait until I have been back on it for the full four infusions... this was an overwhelming thought since I was a week away from number 2.  She did show me my chart and the amazing progress I had made while on benlysta and to just hang in there.  So I did. 

September is usually a pretty stressful month for me, I have WAY too much going on in my life, and this year with the Benlysta not yet working in hit me hard.  I struggled all month with painful days after painful days.  Getting home to medicate myself couldn't come fast enough.  I remember a recent Sunday when I was at church and I had three friends tell me I looked amazing and I must be feeling good, what I didn't share with them was no, this was an act and apparently I was acting too good so I needed to tone it down so no one would ask if I was really doing ok. 

September may have been the worst Lupus symptoms I have had in a LONG time.  But on last week I got the fourth infusion... I wasn't too optimistic that it would start working but as of yesterday I can say without a doubt that it has kicked in.  I NEVER want to end the infusions, I NEVER want to go back to feeling the way I did.  I am so thankful that it is actually working. 

Don't get me wrong, I am going to take it easy the next few weeks just to make sure.  

On another note... I decided at the begining of September to go gluten free for two reasons.  One, a few years ago my Rhuemy asked me to just to see if it would work.  I didn't have the motivation then or the willingness to try new things and two, I can't loose weight for anything.  The first week I had a bad headache but for the most part it's been pretty easy.  It's been 6 weeks and I am told it can take 6-8 weeks to see a difference,  I know it will be hard to tell since benlysta was started back up but I will just wait and see. 

I will keep you posted!

Thursday, July 5, 2012

July 2012

A brief background for you before I get into the real motivation for this post. 

I have been off benlysta.  April 29th I learned I had bronchitis.  That afternoon I had symptoms of a kidney infection.  Sure enough I had one.  My doc thought the antibiotics would talk care of the infection, but two weeks later I still had it, but no symptoms.  She told me she is not too concerned but to follow up with my primary.  Since my schedule was so hectic I put it on the back burner.  She didn't sound too concerned so I wasn't either.  Then as I went in for my next infusion I got a call saying that because I had this infection I couldn't get it.  Great. 
So I saw another doc, got another antibiotic and this last Tuesday saw my PCP and was all cleared.  I partly wonder if he cleared me because I was having some serious issues with my ankles and he was confident it was Lupus... and at those words, I burst into tears.  I had finally seen the benefits of benlysta without a doubt in the world.

The last few weeks have been a consistant reminder of the role Lupus plays in my life.  My pain level was high, every inch of me ached.  Anytime someone touched me for a hug or something I seared pain through my body.  Chest pains at night that would wake me, exhaustion so strong that getting home from work was the only desire of the day so I could go to bed.  And guilt.  Guilt that I couldn't be a part of my family.  Guilt of not wanting to take my son to his class, guilt of letting him play video games the moment we walked in the door.  Guilt that my husband had to make and clean up dinner.  Guilt that staying awake after my ten year old went to bed so I could spend time with my husband was just too unbearable. And guilt that pain medication was the only thing I desired to make it all numb.


A feeling I haven't really felt this strongly in several months. 


A feeling I was choosing to feel.  But couldn't make a different choice for myself.

It's my fault.  I put off the appointment.  I was lead to believe it wasn't a big deal so I just didn't care.  I have learned that lesson a very important lesson.

But in all this guilt, yesterday may have been the biggest smack in the face for me.  I couldn't keep up with others around me.  I struggled with being in the sunshine. I struggled with standing for long periods of time and finally I had to distance myself from the fun and go inside to watch from the window.  I try desperately to disappear without being noticed, because I don't want a big deal made.  I don't want the fun to stop just cause I can't be there.  I ended up dozing on the couch to catch up on those elusive spoons I have been searching for the last month.
But it was the first time in months I really felt like I had pushed myself way too far. I sat on the couch looking out the window realizing that benlysta really did make a big impact on my life.  It really gave me more time with my son, more time with my husband and more time with my friends enjoying life.

Today I was studying Ruth for a weekly bible study I am in, and there is apart where the author talks about her friends pain:

"I can cope with the pain for the most part, but the despair of feeling forgotten by God's healing is overwhelming". 

To me, I don't feel forgotten by God, I feel that God has chosen this path for me and to me that is more overwhelming than to think He forgot me.  I know He didn't.  But I do consistently wonder why I was chosen this path, and these challenges.  But a paragraph later she writes "God love endures forever" and when I read that my mind is at ease.  Oh I still wonder why this is my cross to bear, but I know that God still in control, even through my pain, feelings of defeat He is there. And in my lowest point He is holding me.

Thankfully my rheumy can get me in tomorrow for my infusion.  I am ready for it.  And if the side effects return I am ready.  My body is reacting well to this medication and I thank the Lord for this gift he has given me. 

Friday, June 22, 2012

Like last year I will be giving away a Disney gift basket that will include 2 one day park hopper passes to a Disney park*. Pictures will be posted next couple of weeks.

Or a lap quilt, made by me, in the fabric of your choice...

Here are the details oh how you can win:

1. 1 raffle entry for every $10.00 you donate.

2. An additional raffle ticket each time you post it on your Facebook/Twitter page (Please tag me so I can keep track)

3. An Additional raffle ticket if someone donates because of your link

4. THREE more tickets if you join our team (Seattle walk or Virtual walk)

5. An additional ticket for each of your friends that join the team

6. Raise $100 and I'll toss in another ticket.

Please contact me if you have any questions.

*(Park tickets will be available mid December)

Donate to my page by clicking HERE

Join our team HERE

Thursday, May 10, 2012

What World Lupus day & Lupus Awareness Month mean to me

A few weeks ago I shared my story to women who have known me for years. I thought the fact that I had Lupus wouldn't suprise them since I don't hide it. But, it surprised many. I was disappointed in myself for not sharing more about Lupus with others and the more I thought about it the more I realized that I was, but the platform I was using wasn't for everyone and I don't walk around with a billboard announcing it. Instead I use social media. I realize I'm quiet on facebook about it. I use twitter to vent about lupus, and even then I block people who know me in real life. I keep a blog, but would prefer not to know if people I know read it. Why? Because I like to vent. And because I don't want to be defined by this disease. You maybe saying to yourself "but I would never do that", but you do, you just don't know it. Today is World Lupus Day. A day to raise awareness. A day to educate someone who may or may not have had an opportunity in the past to learn what Lupus means. Don't feel sorry for me, that maybe the worse thing you can say. I am not sorry. This is my story, this is a part of me. And today I choose to stand up to Lupus and tell it to back off. Today I choose to raise awareness because the more people that know the better chances of a cure being found in my lifetime! So today I URGE you to share something about Lupus somewhere, somehow. Put it on your facebook status, encourage your friends to particapate in "Put On Purple" next week DO SOMETHING! No more Dr. House jokes, let's get rid of this once and so no one else has to deal with this!

Wednesday, April 18, 2012

Put on Purple for Lupus

On May 18th the Lupus Foundation of America is hosting a "Put on Purple for Lupus" event. The goal is to get people to wear purple to raise awareness for Lupus.

I am going to have a contest... So here are the rules:

Wear purple on the 18th and post a photo on Facebook or Twitter (Tag me! I have to see it!)

Get others to do this (Have them tag both you & me so I can keep track of who did it because of your efforts)

Get a Celebrity to wear purple and get 5 extra entries (Local celebrities count too!!)

Get your company to sponsor this event and get 3 extra entries.

If you need more information, posters or something to get the ball rolling with your comany you can email me or comment below and I will help you out. (Email: lewisdca at
The prize is a $100 PF Changs Gift Card. So dig out that purple and join in!!
PS- Here is the Facebook event:!/events/205471922889558/ or comment below and let me know you will join us!


I have been playing with this post in my head for a few weeks now. But this weekend really set off my frustrations.

I had made plans for the weekend, no more than a "normal" person could handle. My 9th Benlysta infusion was on Friday (a week late). I left wrok early and went home to take a nap so I was ready for what was ahead of me. That is really when my frustration hit the roof.

By Sunday I was so exhausted and in so much pain I could barely deal with it. I want to be able to live my life. I want to be able to make plans and follow through. I want to not have to worry about flaring any more.

Sunday I started a flare. My first one in months and this maybe the most discouraging one. What can I say. I haven't had one and I was proud of that. I got through Sunday doing all that was on my list (yep, pushed myself). And then Monday morning came and I WENT TO THE GYM.... what is the world was I thinking. When did I get into this I can do it all no matter what mentality?

And the real surprise... I over did it at the gym. I hurt so bad I can hardly walk (even two days later). Sitting down or standing up is the worse! I've heard the comments of "no pain, no gain", "go back to the gym and work those muscles again it will help", "if your sore stretch".

These comments drive me INSANE. My body isn't a normal body. My body doesn't heal like others. Pain is a bad thing.

Why do I do this to myself?
Why do I think that any drug will make me "normal"?
Why do I expect Benlysta to make is all go away?

The flare has died down, no rash on my face (my neck & back are not so lucky). The chest pains are lessing. But I don't know if that is because my focus is on the fact that the squats I was doing with 25# killed my legs.

Time for me to stop expecting that I will feel better. Time for me to go back to listening to my body and accepting what is dealt to me.

Tuesday, March 27, 2012


Not much new to update on my end. Wait, I take that back. I have been putting off posting for so long I haven't give you the latest update... so here goes.

Last month I learned that my Iron levels were seriously low. So much that they were considering stopping the benlysta if I couldn't get them back up. I am taking Iron supplements a few times a week. They make me itch like crazy so I don't like to take them.

Friday I go in for a procedure that will hopefully stop my mentral cycle so my iron levels don't drop. I hope that works because stopping the Benlysta is not something I want to do.

In other news, I was watching one of the new talk shows last week with my husband and it was on ADD/ADHD and my husband kept trying to convince me that I have it. So now I am contemplating testing for that. The only thing stopping me is the idea of another medication. But the promise of feeling organized and being able to finally finish something would be amazing. I'll keep you updated on that!

Tuesday, February 28, 2012

My take on the Royal Pains Lupus Story Line

I am a big fan of the show "Royal Pains" on the USA Network. I was behind a couple of weeks when the show aired where the character with Lupus died, but I saw many posts from others in the Lupus community that were upset that they had shown a character with Lupus die. So here is my take:

As I watched the show (the story line was approx 5 episodes long), I was happy to see a Lupus story line that didn't use Lupus as a joke or something that was so mysterious they only explained it with severe exhaustion and a rash across the face.

I watched as the character heard the news, and dismissed it as if it was nothing. It was interesting to watch as it went through the episodes where he didn't really listen to his doctors, or ignored the care his friends wanted to give him. We have all been there, right? We get the news that we have this disease and we say that we can ignore it. We see our friends start to look at us differently and we tell them that we are fine when we aren't. We ignore the treatment our doctor is suggesting because it isn't really that bad.

I will admit that when the character died, I cried. It was so hard to watch. To sit and think "I have what he has". But I am glad that USA chose to show a side of Lupus that many other platforms don't. Yes the majority of Lupus patients will die of a Lupus complication. Yes, we will be hospitalized at some point. So let's show the world. If we are going to raise awareness let's do it right. I really think House has played a worse roll in raising awareness for Lupus than Royal pains did.

I will also admit that I laid awake for a long time afterwards disturbed by what I saw. My husband was with me as we watched it and he was really a rock for me at that point.

Sometimes reality is hard, but you know what, it's reality. And if we don't face what is ahead of us our lives maybe drastically changed because we didn't plan ahead (Or do that treatment we weren't prepaired to accept).

Wednesday, February 15, 2012

Lupus and Genetics (Guest Blogger)

Written by Jenna Walters
Lupus is a disease where the body’s immune system attacks its own healthy tissue, causing inflammation and damage to the skin, kidneys, lungs, heart and blood. A normal, healthy immune system functions as a defense against viruses and bacteria, however, Lupus confuses the system so that it is unable to distinguish between healthy tissue and antigens. Lupus is prevalent in those of northern European descent, blacks and particularly in women aged 15 to 45.

Is Lupus Linked to Genetics?

Leading experts believe that genetics is a definite factor in the development of Lupus. The basic theory is people with Lupus often have a close relative with the disease, while a small percentage of children who are born to parents with the disease will inherit it. Furthermore, studies have shown genetic makeup plays a role in the disease, as Identical twins are more likely to be at risk for Lupus than fraternal twins are.

The Role of Genetic Research

Researchers have identified a number of genes that are associated with Lupus in women and continue to make breakthroughs with further studies for isolating other genes that are likely to cause the disease. Technology has enabled researchers to examine more closely the genetics of various ethnic groups and the way in which other factors as onset and complications of Lupus are predetermined by genetic variances.

In the future, scientists envision specific genetic clues that will reveal which conditions a patient is more likely to be at risk for as well as the correlation between Lupus genes and other autoimmune diseases. Much like a plethora of other diseases, such as peritoneal mesothelioma, there is no known cure for Lupus, though genetic research teams will soon be able to develop effective strategies for treating the disease and preventing systematic damage with debilitating complications.

Treating Lupus

Anti-inflammatories or NSAIDs and corticosteroids are commonly used drugs for controlling mild or moderate Lupus symptoms, while immunosuppressive medications are recommended for severe cases. In addition to drugs, doctors advise patients to take care of themselves to reduce the severity of symptoms by engaging in a healthy lifestyle with regular exercise, a balanced diet, protection from direct sunlight and reduction of stress.

Jenna Walters is a recent college graduate and aspiring writer interested in health and wellness. She is especially interested in touching people’s lives through her writing. Jenna also enjoys kayaking, hiking, and reading.

Thursday, January 26, 2012

Today's devotion email

I get an email every day from Rest Ministries- Chronic Illness and Pain Support. I do my best to read them every day as well as one day of devotions out of the book "Mosiac Moments: Devotionals for the Chronically Ill. And I reflect on them through out the day.

One I read several months ago talked about leaning on God for physical strength, this is something I ask God to show me every day. I lean on him for emotional strength most of the time, but I don't understand how to lean on him for physical strength.

I wanted to share this with you today because today's email hit home. Hit me right upside the head. So here it is:

"As he went along, he saw a man blind from birth. His disciples ask Him, ‘Rabbi who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the work of God might be displayed in his life.’” (John 9: 1-3)

One dear-lady on one of the prayer forums I visit requested prayer for her church and a member of this church. This church-member suffers from Multiple Chemical Sensitivities, one of the illnesses we refer to as an “invisible illness” because we can not actually see the results of the damage this illness can cause. Since there is little known about this disorder, the church members took it upon themselves to intervene and try to heal this member in their own way.

Rather than offering support and prayer, they offered her what they assumed was a “sure-fire”cure.

They felt that this lady was not “physically” ill as she had said but rather suffering from sin in her life. They offered her a book that has chemicals on it to help her overcome her problems. The idea is basically that the more she smells the chemicals in this book, the more she will realize that her illness is and has been all in her imagination.

It always breaks my heart when others pass judgment on those who are in pain. . .
Well-meaning church-members assume they have the answers.
Well-meaning friends offer their cures, remedies and advice.
Well-meaning family members don’t understand why we are in pain.

Soon, we find ourselves questioning our life and illness and wondering if sin has been the reason we suffer so. In John chapter nine, we see a similar situation. The disciples saw a blind man. This blind man had suffered all of his life. The disciples ask Jesus who had sinned, him or his parents that he might have such an affliction. Jesus replied neither had sinned.

You see, it does not please God that we suffer, The Lord desires only the best for us, but the Lord can see past our pain in this temporary life to the eternal gain we will someday receive. This man’s weakness was displaying his spiritual strength, by relying on the Lord to work through him.God’s grace was the power for this blind man to endure his burden. He was strengthened as he relied on the strength of the Lord in his life. God’s powerful grace is more real to us in our sufferings. God’s glory could be demonstrated by working through the human weakness.

I know that when my pain is deep and intense and I am so troubled, despaired and alone, I would like to have an interceding friend who is concerned enough to pray for me and with me.

I would like a friend who would listen and understand.
I have that friend today in Jesus.
He is a friend I can always turn to.
He understands me through and through.
What kind of a friend are you today?

Can you intercede for another in pain? Perhaps you need prayer and understanding today in your own life. Remember precious one, you are so loved today and you are not alone. The Lord does understand and He knows your pain.

Dear Lord: Thank You for reminding us it is not our fault that we suffer so. Please help us to forgive ourselves and take away any guilt that is misplaced. You demonstrated in Your Word that this world offers pain because the world is flawed, but that we as individuals are not at fault when illness strikes. We can be blessed and assured that you understand the pain we are in and we are grateful to find any relief through You and Your Word! Thank you, Lord. Amen.

About the author:
Deborah Farmer suffers daily from a few of those invisible illnesses. She desires that everyone in pain today feel the loving arms of a Savior who understands and loves them. Deborah offers her prayers and hugs to you today!

You can now read this on your Kindle. Find out more at

Have you ever been hurt by a well-meaning person who offered a quick cure or solution to your physical ailments? Did you hurt about it even more than your loved ones would have expected? How have you used this experience to respond differently when you are encouraging another person who is suffering?

The text I put in bold really spoke to me. I have been in pain and despair this week and the one thing I didn't look to was God. I had friends offer their ear, but that just didn't seem like enough. I turned to chocolate and didn't get my answers. So today I am committed to turning to God, focusing on Him to guide me through.

If you don't believe in God or are unsure. Contact me. Leaning on Him through my 12 year battle with Lupus has gotten me through some low times. Sure sometimes I need a smack upside the head to remeber He is there. But He is. He understands, He loves me and He puts people in my life to see me through everything.

Wednesday, January 25, 2012

Guest Bloggers?

I recently had a request from someone who would like to be a guest blogger. I have never even considered this, but I am open to it. If this is something you would be interested in doing send me an email and let me know. I will be happy to review your writing and post it. I would like to keep away from sales posts and things of that matter. You don't have to be just a patient, you can be a caregiver or someone on the outside looking in.

Email me

Also, if you have other blogs you enjoy reading or you have one yourself, leave me the link and I am happy to post it on the side of my blog so others can enjoy!

the morning after

This morning I thought I would wake up feeling better. Yes, I know, I have an optomistic look on life sometimes. But I didn't.

The good news, bland food and fluids are staying in me. A lot of stomach pains come with that, but it works.

Surprising my joints are doing ok today. Last night it was horrible. Had to take medications to sleep. I am feeling stressed too. Is the Benlysta working? Is it not? I just don't know anymore.

I thought working out was helping my body feel better with the Benlysta, now I don't know. What else can I do? I don't know.

Time to pick myself up off the floor, figure this crap out and move on. I think this will be much harder said than donw, but I am going to try.

Tuesday, January 24, 2012

Ever feel alone?

I know I'm not alone. Thousands of people deal with Lupus everyday, but each case is unique. This week I have been keeping myself out of the gutter, but just barely.

I am so frustrated with all I am going through. I was feeling so great and then something hit and now I feel as bad as I did 6 months ago. What is going on? Is the Benlysta done working? Did it ever work, or was I fooling myself?

Back in September my husband challenged me to loose 80 pounds. 80 pounds I would give anything to loose. But it's been hard, very hard. Going to the gym is hard. Not because I'm out of shape but because it hurts so much. Everything I do there I will pay for the next several days. I want this so bad and yet I can't achieve it. I want this more than anything and it's so hard. I worked with a trainer tonight and I had to keep taking breaks. It killed me to see all these people that make it look so easy (my husband being one of them). I just feel defeated.

Between feeling like crap suddenly and the realization that I will probably never loose this weight has but me on the depressed track. Maybe I'm throwing myself a pity party but I really feel alone. No one knows what it feels like. No one understands. I wonder why I got dealt this hand I. Life. When will someone come along who can mentor me through this?

Monday, January 9, 2012

Product review

I was not given product for this blog post, I just love this product- although if they wanted to send me some as a thank you I wouldn't turn it away) :-)

I am NOT a "health" person. I roll my eyes at people who say this vitamin or that will probably help me with my Lupus. Mainly cause I have tried it all. But I had confided in a friend of mine about my struggle to loose weight and how I desperatly wanted something I could have for breakfast that was fast and easy to do. She told me about this drink... I am a PICKY eater, so I was skeptical. She gave me a three day sample and I actually was able to drink it.

The first is a mix called "Green Vibrance"

Green Vibrance is the original Concentrated Green Superfood. It's a nutritional powerhouse that improves energy and endurance, strengthens immunity, improves digestion and circulation. Green Vibrance has more nutrient density than any other green-food product on the market. It contains 58 certified organic, concetrated foods and extracts, all of the highest quality, along with an industry-leading 18 billion probiotics per serving. (From the Amazon website)

Click here to find it on Amazon

I also mix it with "Rainbow Vibrance"

Rainbow Vibrance red, yellow, blue & green fresh fruits and vegetables two-thirds of a pound of fresh fruits and vegetables concentrated in each scoop. Equivalent to 4½ servings of fruits and vegetables 3,974 ORAC units per serving; Gluten free. We do not live in a monochromatic world. In the realm of nutritional supplementation, red drinks are not enough. Blueberry, blackberry, grape, plums, peaches and apricots measure up well against the famous red fruits cranberry, raspberry, cherry and Camu-camu. But good health does not revolve solely around the strength of anti-oxidants in the diet. Soluble and insoluble fibers, indoles, sulphorohane, flavanols, flavonoids, and complex polysaccharides and carotenoids all play a part.

Click here to find it on Amazon

I mix these together with 10 oz of orange juice and a scoop of Physillum Husk and drink it every morning.

I feel great. The digestion issues I have with my lupus are completely gone (Including when I had my major flare in December). It is the perfect breakfast for me and keeps me "full" until lunch time.

Feel free to ask me questions. But if you are looking for a healthy drink I would suggest these. The cost can be over welming by $100 for two months is pretty good for breakfast every morning.

December Update

So I have once again neglected the blog and now my mind is spinning with all kinds of posts... So I'll start with this one:

December was a fun month, too fun. We decided to take a last minute cruise and I pushed myself way to hard. I really over estimated how great Benlysta was working. So I flared, and flared bad. Still dealing with the flare. Good Times!!

I forgot how bad I felt before I started Benlysta. SO now I am taking it easy, as much as I can and wait for the medication to take control once again. Oh, who am I kidding I'm not taking it easy at all. Still working out, still have a crazy commitment schedule. Will I slow down, probably not. My body just needs to catch up.

My primary doctor wants to test me for diabetes, this to me is a HUGE blow. I'm overweight, yes. But I am trying so hard. If the "cure" for type 2 is weight loss and I can't loose weight how am I suppose to get over it? The test he wants is two hours long and I just haven't gotten up the courage to go do it.

So that is all I got for now... I have other posts that have nothing to do with an "update" that I will type up now.