My Lupus Update

Today's devotion email

2012-01-26T07:21:00.000-08:00

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 http://TodaysDevotionOnKindle.com

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.

Guest Bloggers?

2012-01-25T08:48:00.000-08:00

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 lewisdca@msn.com

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

2012-01-25T08:23:00.000-08:00

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.

Ever feel alone?

2012-01-24T19:21:00.000-08:00

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?

Product review

2012-01-09T07:37:00.000-08:00

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

2012-01-09T07:31:00.001-08:00

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.

November

2011-11-18T11:02:00.000-08:00

I haven't been thinking too much about my Lupus lately because it really hasn't been an issue, which is a HUGE relief. I must admit this week didn't start off too good and it was a sign that the Benlysta is actually working.

I started to flare on Monday night. Stress and the fact that I was due for another infusion probably started the whole thing. I was so sick. Facial rash, chest pain, mouth sores, exhaustion and pain EVERYWHERE. So I fought my way through the four days to this morning. But I have to say I was reminded of how I feel when I am not on Benlysta.

Every joint feels like it was hit with a baseball bat, every movement has to be carefully planned. Every free moment should be spent resting. I am so incredibly thankful that this medication is working, and working well. I would be happy to take a few days every month of feeling like this if it meant the other days were so much better. The other days are filled with activities, family & friends. It is so great to feel so good.

So today was my 4th infusion. I enjoy getting them. I am excited to get them. And then 1/2 way through I am reminded of why I do these on a Friday. Nausea and exhaustion quickly set in. I am not complaining by any means. I will be rejoicing for as long as it works. I am so greatful for a drug that finally makes a difference in my life.

But now I struggle with habbits. After years of having to come home after work and lay down I come home from work and I have no idea what to do, so I go lay down. I need to learn to cook and clean spend more time with my family. I still need to listen to my body, but I need to learn it's ok to push myself and do what a "normal" person does on a daily basis. This will take time, but honestly, I don't even know where to start.

I hope you all have a safe, rest filled Thanksgiving next week. I will be enjoying time with friends as we play cards until the wee hours of the morning!

3rd treatment done

2011-10-26T08:41:00.000-07:00

So I had my 3rd infusion last friday for Benlysta. The nausea was nonexsistent, but I was still pretty tired for two days after. Luckily I can handle being tired. I did however realize another side effect I was having... after 48 hours of sheer exhaustion I deal with several days of insomnia. That's right as of today (Wednesday) I have had maybe 7 hours of sleep since Sunday night. You would think I would be exhausted, but really I'm not. I hate being awake all night. It is so boring. I do go watch TV, but our couch and chair are so incredibly uncomfortable that I begin to hurt all over so I can't do it for long.

I have realized that the Benlysta is begining to work. First, I have a monthly flare with my cycle and I didn't get one. And second, I worked the Seattle Lupus Walk and even after all that no flare. I have had some minor set backs with my pluerisy, but that I have been able to deal with.

It is really exciting to know it's working. I'm still causious about talking about the fact that it's working. But I secretly know that it is. It is so exciting to think it might be working. 11 years of medication after medication.

Now my infusions are monthly, so I guess time will tell.

Benlysta and Other feelings

2011-10-18T07:49:00.000-07:00

I started Benlysta 5 weeks ago and on Friday I get my third dose. After the last two I have spent my weekend sick and tired. Normally I would say, it's not an issue, but this has knocked me out. If it works, it will be VERY worth it! So far other than the two days after each infusion I feel my normal.

This last weekend was the Seattle Lupus walk. I sit on the committee that puts it on and I must say I expected to have it hit me very hard. I didn't "wear out" until after 12:00 which is a huge improvement over last year. Now I did go home and spend the rest of the weekend resting. So I don't know if the fact that I feel ok today is a sign of successful resting or if maybe this new med is starting to work. I guess only time will tell.

And now on to some venting...

In the past I have been exposed to people who claim to be lupus patients. (I know I shouldn't judge and believe their word). But their actions really make me question whether or not they do have it. I have been exposed to one of these people a lot lately, and I just want to scream. I feel like she is belittling my disease. She never says she is doing a treatment she just waits for one of us to talk and then agrees or claims her doctor has talked about that treatment. It is so frustrating.
(one once told me that she too had Lupus and Fibromyalgia too but she didn't believe Fibromyalgia was an actual issue).

It's just interesting. Why are these people so in need of attention, why do they have to belittle my suffering?

Hopefully I can let it go, hopefully I can move on. Thanks for letting me vent. And for the record, I rarely question anyone who has Lupus, but after spending a LOT of time with a couple of people i have learned that their actions speak a lot louder and if they have Lupus I would be SHOCKED. What I would give to be healthy.

Lupus is painful

2011-09-20T08:55:00.000-07:00

For the last couple of weeks I have needed some heavy pain killers to get me through the night. But I always fear becoming addicted and needing them to sleep. So last night I decided I can do it, I can sleep without them. Boy was I wrong.

I am not a big pill popper, so I always look for ways out of taking medication. But with narcotics I am super careful. I don't like to take them every night and I don't like to take them after midnight (for fear of not being able to get up in the morning).

So last night I thought I could handle it. I thought I could sleep without issues. I was sore when i laid down but I didn't think much of it. Then at 1:00 I was awake, in pain. A lot of pain. I tried to get comfortable. I just couldn't. The only way I can describe it is it feels like someone beat me with a baseball bat. The covers on the bed were too heavy, the weight of my body on my hips shot pain down my legs. So I got up. I wasn't willing to pop the narcotics.

I watched tv, walked around the living room. Sat down, laid down, anythin position that would ease the pain for just a few minutes. After an hour of bad TV I knew I had to try and go back to bed and yes take those pain pills.

I opted for my lesser dose meds in hopes of being able to get up in the morning. it took anoth 45 minutes of me laying there getting comfortable and waiting for the pain to go away. When it finally did sleep came back. Getting up this morning was extremely difficult. My joints were stiff and bearing weight on my joints was painful. But I have to get up. If I let Lupus win every day I will go no where. I need to win the battles.

BENLYSTA Update: I was approved for Benlysta over a week ago. But we have to go through my mail order pharmacy. Not sure why but it's frustrating. Last Monday I called and was told the RX was written for the full amount my insurance allows so they had a call into the doctor for a new RX. Then Saturday I get a call asking if I approve the medication and if I approve it to be shipped... um YES. But they can't ship it until they talk to my doctors office and confirm they will receive it. So HOPEFULLY yesterday my doctors office called them back and confirmed that yes they will receive the medication so it would be shipped. This is really frustrating. And to add to this awesome flare I am angry. Could the Benlysta have prevented what I went through? I don't know, but I am hopeful that I wont have to go through another night like that one.

I'm Tired

2011-09-13T12:59:00.000-07:00

Like that's a shock.. I'm ALWAYS tired. Yesterday, after almost three weeks, I got word that my insurance approved Benlysta. I was so EXCITED! The catch? it had to go through a mail order pharmacy (their pharmacy). I didn't think much of it until today. I called to find out when to expect the med only to learn that first, they had a question for the doctor so they were waiting for a call back. Second their processing time is 5-7 business days. I was so stinking annoyed. 5-7 MORE days? This is so stupid.

I realize this is probably another lesson in patience, but I don't feel well, I want to get it started. I WANT TO FEEL BETTER!!! Deep down inside I know it will take time for Benlysta to get in my system. But when you feel like I do that hope of getting in my system soon so it can start working is there.

So I sit and wait. It sucks. I guess the good thing is it's in process and the wait wont be that long, right?

Walk Giveaway

2011-09-07T10:10:00.000-07:00

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

September

2011-09-01T09:20:00.000-07:00

It's September already? Wow!

I saw my Rheumy last week. The meds she had given me in July made me sick, really sick. I was up all night sick and I called and said I was done with them. I didn't see a difference until after I stopped taking them.

When I saw her we had a long talk about the next steps and Benlysta was mentioned. For those that don't know, Benlysta was just approved this past winter. It is the first Lupus drug to be approved in over 50 years (Roosevelt was president).

The problem? the waiting period to get it approved with my insurance. I sit here a week later jumping everytime my phone buzz's, which happnes to be a lot. I'm ready, I want to take this step. I have heard so many positive expierence's with Benlysta (Yes, I've heard the bad ones too), that I am anxious to try it. I want to get it running through my body now. Why do the insurance companies have to take so long to determine if my doctor is right or not on my treatment... So I wait. I was told that it could take two weeks. TWO WEEKS? don't they get how crappy I feel? Or how once I get approval I have to make the appointment and wait for the office to get the drug? Don't they get it? I am sure I wont be able to get it til the middle of September, but it's so hard to wait. I just want my energy and my health better. I want the pain to go away!

I've also been pimping out my walk page like no body's business. I am passionate about Lupus awareness, I want a day when I don't have to tell people what it is. Will that ever happen?
Click here

My "Why I walk" Story is on the link above, and yes there is a Disney Gift Basket up for grabs that will be raffled off for one lucky winner. Help me today.

Why I walk

2011-08-12T10:31:00.001-07:00

If you don't have me on facebook or twitter than you haven't seen this link... Check it out:
http://www.lupus.org/webmodules/webarticlesnet/templates/pacificnw_news.aspx?articleid=4012&zoneid=257

This site changed their story, so you can now find my Why I walk Story HERE

What is pleurisy?

2011-08-09T11:36:00.000-07:00

What is pleurisy?
Pleurisy is swelling (inflammation) of the thin layers of tissue (pleura) covering the lungs and the chest wall.

The outer layer of the pleura lines the inside of the chest wall, and the inner layer covers the lungs. The tiny space between the two layers is called the pleural cavity. This cavity normally contains a small amount of lubricating fluid that allows the two layers to slide over each other when you breathe.

When the pleura becomes inflamed, the layers rub together, causing chest pain. This is known as pleuritic pain.

Pleurisy is sometimes called pleuritis.
(Above was taken from the WebMD.com defination).

So that above is how pluerisy is described, but let me tell you about it in my own words.

Your sitting at your desk, making dinner, driving or even laying down and all of a sudden my chest gets the stabbing pain. With every inhale I feel like my lungs are being stabbed. And with every exhale they feel the same. My entire body tightens up in hopes of enduring the pain. How long will this one last? Relief, when can I get some relief. If I hold my breath I get a little relief, jusst don't move my lungs. Then I take shallow breaths as long as my body can handle it in hopes of less movement. By now I am usually hugging a pillow or something close by and climbing into a ball in hopes of some relief but none comes. It can wake me in the dead of night. It is one pain I can't hold in. It takes all that is in me not to cry out and hope for relief soon.

You see, pleurisy can come and go whenever it wants.

By the time it goes my back hurts, my arms hurt and my head hurts from all that I have done to relieve the pain that really can't be relieved.

Right now I have had several attacks in the last 24 hours. Attacks that are bringing me to tears, attacks that even my strongest pain med doesn't even touch. Attacks that lingere in my arm and collar bone area until the next one. Attacks that just make today painful.

I wouldn't wish pleurisy on my worst nightmare. I wouldn't wish it on anyone. It is something terrible. But it's just another sign for me that I have Lupus. That I will never have a day without pain and that this will never go away. It's also a sign that meds are working and we need to look at "what's next". It's a sad sign. But one I am going to share with anyone who listens.

It's true Lupus sucks hard core. But we need to raise our voices and make it heard. So stand up and be heard. Find a walk in your area. Share this with someone who doesn't know what lupus is. Help us raise awareness.

In the meantime I'll be curled up trying to relieve this instense pain.

Update

2011-08-03T12:30:00.001-07:00

I am going to see if I can get through this post without completely losing it.

On July 13th (My birthday) I had an appointment with my new Rheumy. I was so nervous. I even had a panic attack while waiting for her. It was crazy. Within the first few minutes I knew she was going to be a perfect fit.

We came to the conclusion that the Rituxan was not going to work for me (Sucks, all that crap I went through and the weeks worth of bed rest). She also discussed trying to manage my Lupus and not my symptoms. I didn't realize before that we weren't doing that. So I listened intently and we created a plan, one I was very happy with.

I left the doctor's on a high note with prescriptions in hand. When I got back to my office all hell broke loose in my personal life. My brother's 18 month old nephew drown in a back yard pond.

My little brother lives in Salt Lake City and me in Seattle, 13 hours apart. Plus my brother has some severe mental health issues (Manic Bipolar to just name one). I didn't think, I jumped in the car and headed home crying my eyes out. Grabbed my nine year old packed and hit the road. Planned on driving until I got there.

The reason I post this is because my lupus has been calm through all this stress. I was awake for 36 hours without a break and emotionally falling apart, but my body held it together. By the grace of God I have made it with no flare. I didn't even stop to fill the new prescriptions. My body held it together til I got home and started the new meds.

Even three weeks later I am feeling pretty good. The stress of what my brother and his wife are going through still falls heavily on me, but I am doing ok physically. This is a shock to me. I have really struggled with what it means lean on God physically and I think I am learning that lesson during these times.

I hope my Lupus friends have what I have in God. I pray for each of you daily that you get the support from the One who can truly give you that support.

Much love...

Walk

2011-07-19T09:16:00.001-07:00

The walk is less than 3 months away and I am busy putting stuff together to make this years walk a success.

I will be putting together a Disney gift basket that will include 2 one day hopper passes that will be raffled off after the walk.

Click here for our team page

Each donation of $5.00 will receive 1 entry. As we get closer any posts on twitter & Facebook will receive another entry (Please tag me in the post or use my twitter name @BHCori).

I willl post photos of the gift basket when I return of Disneyland in August.

Sacrifices

2011-07-11T09:22:00.000-07:00

Because of Lupus I have learned to make a LOT of sacrifices. I have had to learn to say no and to listen to my body. That is so incredibly difficult.

Last week was especially hard. First it was the Fourth of July, stupidly I spent two hours that morning in the yard and then decided to do some serious house cleaning until my friends arrived for a BBQ & Fireworks. Now I have learned my lesson in past years and took the 5th of July, which I basically spent in bed.

The week only got worse, but it was my own fault. Wednesday I started cleaning out the garage, Thursday I was in bed. Friday we had a garage sale and I went to a concert.

I know, some of you are saying a concert?!? what are you THINKING? I'm thinking that there are few things in this world I will go to until I die.

And my favorite all time boy band is one of those things. New Kids On the Block (NKOTB) are touring with Back Street Boys (BSB). I left at 2:30 for a 7:30 show. Picked up friends, sat through traffic and made it to Tacoma by 5:00, by this time I was already tired. Now my first "plan of action" was I would sit when BSB was on stage cause they are not really a favorite, but that failed. Once it started I was so entertained. I have to say 3/4 of the way through the 2.5 hour concert my body said no more. I was seriously ready to cry. I ad noticed I was feverish on the drive down but I ignored it. I choose to sit when the BSB were back on stage. I must admit even though my friend has been with me for several years I felt embarrassed that I couldn't hang for that long. Embarrassed that she offered to step outside with me so we could cool down. At this point I hated my Lupus more than I ever have before.

Let me tell you it only got worse from there. I have waited 20+ years to meet Donnie Wahlberg and Jon Knight, Donnie sometimes will go to a resturuant after the show and meet fans. So guess what I did... yep. Spent an hour getting away from Staduim traffic and hit the closest Denny's where we waited and waited. I seriously could not hold my head up. By 1:30 I couldn't do it anymore and I was the driver so I called it a night. Someday right?

I got home a 2:30 and couldn't sleep past 6:30. I was so tired I wanted to cry, couldn't even take a nap that day. Yep I over did it.

So now I struggle with do I go through that again? Do I sacrifice my body and every thing I need to do for the week after just for a few hours of entertainment... my heart says YES! my body says NO!

My husband has said I could go on the cruise next year.. if there is one, but can I handle it? Can my body go through that? I just don't know.

I hate the sacrifices I have had to make for Lupus. I hate the sacrifices I "should" be making.

Yesterday we skipped church so I could rest, which didn't last long. Went for a walk and then played softball. Sad to say today I have my feet elevated at work and I am in pain and my joints are swollen. I guess that's not so bad after having an amazing weekend, huh?

What sacrifices do you refuse to make because of your chronic illness?

I've been avoiding you...

2011-06-29T09:52:00.001-07:00

bad I know. But sometimes typing it out makes me have to accept it. I'm in a flare... a bad one. My body hurts.
For those without Lupus, think of what it's like to have body aches with the flu, then double that pain and know that's what it feels like every day. I'm sure I have said it before, but I hate this.

Each flare makes me feel like lupus is breaking me. I know in my heart it's not. I know that with God's strength I will get through this. It is so funny to say that. I have really been struggling with that personally. I find it easy to give God my emotions, sadness, stress, happiness, worries. But how do I hand over my physical well being to Him? He isn't physically here to let me lean on to walk down the hall. I am really struggling with that... not in a bad way, but in a way I so despartly want to understand.

There is a holiday weekend in my future. I had to take the 5th off just to recover from it. I plan on staying in bed as much as possible and just resting. But for now life my continue on.

Once again I am blessed with an AMAZING husband that is letting me rest when I get home from work, offering to sleep on the couch so I can move around as much as possible and just being amazing.

Dear Family & Friends

2011-06-22T14:30:00.000-07:00

You may be aware that I am a member of the Board of Directors of the Pacific Northwest Chapter of the Lupus Foundation of America (LFA). Two of my responsibilities are to increase public awareness of the disease and to raise funds to help our nonprofit.

I hope you’ll help me accomplish both of those jobs.

On Monday, August 1, we will be hosting Hit the Links for Lupus at The Golf Club at Echo Falls, near Woodinville. 90% of the money raised at this event will fund local programs for our members such as brochures, support groups, teleconferences and a lupus help line. The rest of the funds will be pooled into our national program, Breaking Down the Barriers, which funds research to find the causes and a cure for lupus.

The fight against lupus is important to me. If you read my blog, twitter or facebook you know that I have Lupus. I have had Lupus for 11 years. When I became invovled with the Lupus Foundation's Pacific Northwest Chapter I wanted to raise awareness. To share with people I connect with every day on what Lupus is about.

The effects of lupus on families can be devastating. Lupus patients deserve better and more effective treatments. This year, thanks to the efforts of the LFA, the entire lupus community and dedicated scientists, the FDA approved the first new drug for the treatment of lupus after 56 years of waiting for a breakthrough. That is too long a wait!

Your participation will help me and our local chapter make a difference in the lives of people with lupus. I promise you will have an enjoyable day on the course supporting a very good cause. Single golfers are welcomed at $150. If you can arrange a foursome, the price will be $550. Green fees, cart, beverages and lunch are included in the price. Please call 877-774-2992 or email info@lupuspnw.org for more information or to reserve your spot.

I hope you’ll mark your calendar and join us at 8 AM on August 1 at The Golf Club at Echo Falls (www.echofallsgolf.com). Thank you so much for your support.

With best wishes,
Cori

So I went

2011-06-22T12:53:00.000-07:00

I went to the doctor yesterday... it wasn't what I expected. First Lupus patients who receive the infusion need to wait 3 months... NOT 8 weeks for it to work... 3 MONTHS?!?!?!? I was not happy to hear that. So I have a few more weeks to wait.

If it doesn't kick in I start the new Lupus drug Benlysta, assuming that my tests all come back where they need to be... oh the stress. :-).

Then my Rhuemy told me she could be moving on to bigger and better things. I was shocked. I have been seeing her for 11 years. She is amazing. SHe understands me, doesn't push steriods and is willing to try so much. I was reassured that she would talk to me "new" doctor and explain me to her. I just hope that my first appointment in July isn't a total disappoinment.

So that's it, in a nutshell. My body continues to scream at me. But I am dealing with it one day at a time. Summer will be here soon and hopefully it will be mild so I can give my body a break from rain and heat.

It's been a while

2011-06-20T09:43:00.000-07:00

So it's been awhile. I have played with this post over and over. I hurt. A lot. Pain sucks. The infusion seems to have failed. All that for absolutly nothing. I had such high hopes, but I'm over it now. Tomorrow I go back in and see my doctor to find out what's next.

It's hard to feel this way and realize it's not normal, or that my friends have no idea what I am dealing with. Nobody knows that when it rains I feel every rain drop in all of my joints. This was a weekend of rain and I was burned out on the pain.

My desire is to live, do what I want to do. But my body says no way.

where am I...

2011-05-24T08:19:00.000-07:00

So every time I start to feel good I wonder, is it working? I just don't know...

Monday's are the hardest day of the week for me. I always come home and crash. But last night I came home and realized I didn't feel the need to "crash". I did, but I realized that I did it out of habbit. So now I need to learn how to take it easy in the evening and still get things done. That seems easier said than done.

I wasn't free of pain. Actually I have a "new" pain that is involving the whole right side of my body. It is wierd, part of it is muscle and part is joint. But I will push through it and hope that it will be gone in a day or two.

2011-05-20T08:51:00.001-07:00

Last weekend I met Jordan Babineaux from the Seattle Seahawks. My husband and I are BIG Seahawks fan (Big NFL Fans, really). I had heard that he has an orginaztion in Texas to raise money for Lupus and ever since I have been spamming him on twitter hoping to see if he can help our small orginazation in Seattle.

Ever with my flare I made it to West Seattle (About 30 minutes from home) and to the beach and waited. I was so excited. He was attending a walk and told me I could find him there. I spammed him a ton again telling him where I was and all of a sudden he waved to me across the crowd, I was elated!

I walked up and he instantly hugged me (Which I guess is a Texas thing- I'm not a real touchy feely person cause usually it hurts when people hug- they don't get that I am in pain all the time). We talked and he signed my jersey & took a photo. He is one of the NICEST people I have ever met. I can't believe how twitter has connected me with so many cool people.

I have connected with Blockheads, had messages back and forth with Jon Knight *swoon*, had dinner with Raheem Brock, Matt Hasselbeck remembered my tweets when I told him who I was. Conversations with Aaron Curry, connected with other Lupus patients who have been such an encouragement to me, won a ton of stuff and now met Jordan.
I really hope his schedule allows for him to help us out. He seems like such an awesome guy.

Week 7?

2011-05-20T08:41:00.000-07:00

So apparently I was wrong. It's 8 weeks from the second infusion.

It's a long waitting game.

I'm tired.

I don't feel any different yet. I am keeping my hopes up but also getting very impatient. Maybe it's because it's almost summer and I continue to fill my schedule with more and more wating for it to kick in.

But will it? That is the tough question.

This last week has been extra hard. I got a cold. WHen you are on immunosuppresents you just stop them and your immune system starts working again and the cold is gone. But when that drug is an infusion you don't get to stop. So I wait hoping that rest will take care of it.

Still have the rash. It's been 4 weeks. It is getting better but very slowly.

Week 6

2011-05-04T11:32:00.000-07:00

I am 6 weeks in from my first infusion. Yes I am counting the weeks. Just 2 more til I know if it works for sure or not. Part of me knows that the 8 week window is not set in stone... but I'm still waiting.

Each time I realize something good I wonder "is it working?". Things are pretty much the same. I am exhausted, which is normal. And my monthly flare came as expected. So I am waiting and it's making me nuts.

May is Lupus awareness month. I am doing all I can to raise awareness. I get so frustrated that in October all I hear and see is pink. I wish May was like that for Lupus. (BTW- not complaining about BC awareness).

By the way

2011-04-27T14:03:00.000-07:00

I am blessed by your comments. They are so encouraging.

I am also available on email too, so feel free to contact me if you ever need to talk. Lewisdca@msn.com

Thank you all so much! many of you I have not met, but you guys are amazing!

Update

2011-04-27T13:53:00.000-07:00

So things aren't horrible. They are actually back to "normal"... sorta.

So the swollen joints are gone, but my hands are still sore and don't like it when I do repetitive motions too much. So I am trying to take it easy. Apparently it can take up to 8 weeks for the infusion to show it's working... Today I am on week 5, so I am still hopeful.

Right now I am dealing with a rash all over my torso. Went to the Urgent Care clinic on Saturday night and was told I was having an allergic reaction to something, but no body knows what. I have racked my brain but we haven't changed a single thing. And apparently it's been too long for it to be a reaction to the infusion.

So he said "Steriods" and I proceeded to argue. I finally said you can prescribe them til you turn blue, but I wont take them. So if I have to deal with this forever I will.

I'm starting to question that decision.

Part of me is willing to try anything. It looks like I have chicken pox and the rash is starting to climb up my face. So what do I do? I just don't know.

And on the other hand, I'm stubborn. Steriods make me fat, grumpy and sleepless. Why would I take them?

So as I sit for 3 more weeks waiting for an answer. Hoping against all hope that the answer will be exactly what I need. Waiting is so tuff, but I will wait. Counting the days.

I hope you all are having a great day and thanks for letting me rant.

11 years

2011-04-20T11:10:00.000-07:00

11 years ago this month I was dianogsised with Lupus. When I first got diagnosised I thought Lupus would never run my life. I was going to be stronger than it. I was going to beat it.

Well in 11 years I have learned a lot...

I have learned to listen to my body and I have learned that I cannot ignore my Lupus. The last year has been the hardest. I have had to really listen to my body, I have had to stop things I love to do and I have tried all kinds of new medications... the latest one has sent my body into a major flare. I hurt from head to toe. It is getting better, but slowly.

I kept reminding myself that I one of the lucky ones. But I'm starting to think i'm not. Sure my lupus isn't attaking my kidneys, but it is attacking my joints and my lungs it makes me exhausted and gives me headaches... maybe nobody has a good strain of Lupus. It's time for me to open my eyes and start realizing what is going no and start living my life.

Long week

2011-04-17T15:40:00.000-07:00

Well it's been a long week, physically and emotionally.
On Monday I finally called my doctor and was told to come in right away. I hurt. My pain level was at a 8 or 9. She told me thisncould be a good sign of the infusion working. She put me on bed rest and an intense regimen of medications to dull the pain.

First and foremost I hate taking time off work. But I knew I couldn't do my job. So insolent four days resting and it sucked. My hands were so bad I couldn't type. My joints hurt like nobodys business and my muscles hurt from laying down.

I woke up Saturday not sure if I was feeling better or if my mind was ignoring my body so I could do what I had planned. In the end I way over did it.

But on Saturday I saw the movie "Souls Surfer" I wanted to weep uncontrollably. Thisnyoung girl had dreams that could have been cut short but she had the determination to fight and do what her heart yearned for. I was inspired. But also mourned what I have let slide because I didn't have the focus. I need to reevaluate how I lean on God for strength. How I yearn to do what I want to do and not the bare minimum just to get things done. Time for focus and for God to use me in ways that only He can.

I can do all things through God who gives me strentgh.

Bad days

2011-04-10T08:15:00.000-07:00

*disclaimer- I am posting this from my iPad so if there are any weird spellings or typos please forgive me. I will try and proof.

Today I am angry; yesterday I was sad.

Yesterday I was in a LOT of pain... More than I care to admit. But I tried to make then most out of the morning. After running a few errands I was done. My head wanted to explode and my joints were swollen. My skinny little fingers looked like sausages and hurt. But that isnt want made me sad.
My husband and I don't get many date nights. Our youngest is 9 and since we both work full time I hate getting a babysitter so we can go out, well last night he had a sleep over, so for two weeks I have been looking forward to spending the evening with my hubby doing something fun.
After my nap yesterday I hurt. A lot. As we were taking my son to his friends house my hubby suggested we just go home. That hit me hard. Pushing the shopping cart at Target frustrated me, having to sleep for three hours just to escaped the pain made me mourn my sewing room and plans but the idea of missing something I had planned devastated me. I know i should be use to it by now, but I'm not.
We wne to dinner and I fought back tears from the pain, then ice cream and home to watch a movie. The date didn't suck as much as the pain, since that is what I remember.

This morning I woke up with high hopes of feeling better. It's my week to volunteer at the coffee stand and I refused to look for a sub so now I will suffer. Im pissed off. This isn't right. How can I be in so much pain? So swollen? I don't usually swear but today I want to scream "FU lupus!!!" today I am mad. I had things I wanted to finish this weekend.

I just want to know what no pain feels like. I am tired of lupus winning. I am tired.

2nd infusion

2011-04-08T12:50:00.000-07:00

I had my 2nd infusion 2 days ago. I have been debating what to post and to be honest I have a lot in my brain right now, so if this seems scattered forgive me.

first the infusion went off rather well. This time it ended at 12:30 and I choose to go home and sleep instead of heading into work. I was very thankful that the family that was keeping my son said he could stay all afternoon if needed. And by the time I got home I could hardly hold my head up from being so dizzy and sick to my stomach (Yeah, I probaby shouldn't have driven). So then I slept. I slept all afternoon woke up for a few hours and then conked out for the night. I think that made a huge difference in how I felt... lesson learned.

This morning I was digging through all the material to find out when I will start seeing improvement and was discouraged to see "8 weeks". Can someone please tell me why the side effects kick in right away but the drug itself may not work for a full 8weeks??? That may need to be another medical break through.

The last two nights have been normal for me. The pain so intense that sleeping without painkillers is impossible. I'm not dealing with the morning stiffness which is really good news, nothing worse than setting your alarm 15-20 minutes early just so you can start moving your muscles before you get out of bed.

So now I wait. It's a very difficult wait. I want so much to see results but I can't just yet.

I need it to work, I fear my newest hobby is going to have to go away and it saddens me. My hands hurt so bad that I can only sew a few hexagons at a time and it is so discouraging.

If this medication doesn't work I pray that there is one out there for me, I am tired of making sacrifices for my Lupus. I am done making those sacrifices.

The infusion

2011-03-25T15:11:00.000-07:00

So Wednesday I headed up to the doctors waiting for my phone to ring to tell me the infusion was back off. Luckily that didn't happen.

After an hour of premedication (Heavy steriods, bennydryl and who knows what else) the magic drug was hitting my veins. I began to relax.

Within an hour I knew I was having a reaction and I couldn't decide if I should say something (For those that want to lecture me don't bother). You see I wanted this drug to work so badly that I thought I could will the reaction away. I needed an answer so badly that I refused to speak up.

Lucky for my body the reaction started to show in my face with hives and the intense need to scratch. I didn't tell the nurse that I was ready to barf or that my throat was all scratchy or that breathing was difficult (I KNOW). She saw the hives and slowed the drip down and added the second bag of just saline solution to my iv. Within minutes the side effects died.

Yes I know, I should have said something but unless you have NEEDED an answer so badly that you would do anything to get it you can't lecture me. When you have tried every type of pill out there, and the doctor says "this could be the answer" you will bend over backwards to make it work and I did.

The rest of the afternoon went off without a hitch. The infusion lasted a long 5.5 hours instead of 4.5 and when I left I just wanted to crawl into a whole.

The nasuea didn't go away until this morning (two days later), but it's gone. I'm still feeling a little more tired than usual... but I am always tired so I can handle that.

I finally found out that it can take 2-8 weeks to see if the meds are working, so now I wait. Hoping, praying, willing for my life to be normal. I am already making plans for what I am going to do when I feel normal (First- exercise and loose weight!)

In two weeks I have the 2nd infusion and I can't wait... this time it will start off slow so there is no reaction and if there is I may speak up... just not sure.

A ball of emotions

2011-03-23T07:51:00.000-07:00

Today is the day... I hope.

Yesterday morning the infusion was on, then off due to a clerical error and then last night it was all fixed and back on. I wont believe it til the needle is in my arm.

But, I really hope it's on. I didn't sleep well. My mind went nuts with all the possiblities. Good and bad.

First the good, if this goes well I may feel normal. What does that mean? what does it feel like not to be exhausted all the time??? What will I do with my time? I am just overwhelmed with all the possibilities.

The bad, some of the side effects can be intense. I am nervous. I don't want this to go bad. I don't want my hair to change, I don't to be sicker than a dog and I don't want to be hospitalized. Yep those are all MAJOR side effects and the chances are slim and none, but my mind has be swirling with all the possibilities.

I have been up half the night struggling to let all these thoughts go. Struggling to trust God that all will be well in the end, the He will see me through but that is extremely hard. Maybe it's because my pain was so intense so my sleepless night was magnified with hope and fear.

So in 90 minutes I hope to have this liquid magic going into my veins and having my body welcome it with open arms so my life can see a glimer of what everyone else feels on a daily basis.

Medication Update!

2011-03-18T09:05:00.000-07:00

The insurance appoved my new drug in less than 48 hours. I couldn't believe it (Praise the Lord for answered prayers). I have never had to have my insurance approve anything before so when my doctor said two weeks I was a little disappointed but TWO days later I got a call.

They have squeezed me in on Wednesday so I can get the infusion started right away. I am BEYOND excited. My prayer now is that is goes off with out any reactions. I don't think I have wanted a medication to work more than this one!

Update

2011-03-16T15:31:00.000-07:00

I have been avoiding this update for several days...

I found a new hobby, one I LOVE. It's hand piecing a quilt. It is the most relaxing thing in the world. The problem: my hands. Some days my hands hurt so bad I hide the tears. I don't want others to know because I don't want them to roll their eyes and tell me to stop.

It's something else Lupus is trying to take from me and this time I'm refusing to give up. Sucks. But have you ever found something that you adore doing? Something that takes your mind to relaxing places and consumes all the negativity out of your life? That is me with this hand piecing. So I will continue to take a lot of pain pills and hope that my joints will get use to the motion of quilting.

So yesterday I went to the doctors, just a normal check in and of course to ask about the new Lupus drug Benlysta. We tallked and she reminded me that my Lupus has a lot of RA symptoms. It's wierd, I test positive for Lupus and negative to RA, but my Lupus mimicks RA in several ways. So before we can try Benlysta I need to try another infusion first.

It's a risk. She has used it on several patients with great success, but there is also the risk of SERIOUS infection and even death. After listening to her talk my mind immediatly went to all the things Lupus has taken from me and if I could get them back.

She even said the magic word "possible remission". SIGN ME UP! Who cares about the risks, let's do it. I am willing to try anything and the first time I feel wierd I'll call.

She sent me on my way with a notebook full of information and sent the form off to my insurance. So now I wait. It's an expensive drug and we need preapproval. I sit here impatient ready for that call. I'm already planning what I'll do for 4.5 hours while the drug is slowing released into my system. I am so excited... maybe, just maybe I will be hand quilting for years to come.

It's been a long month

2011-03-10T10:20:00.000-08:00

It's been a long month. I finally got over that flare. The new meds I had started caused me to break out into some seriose hives and I had to quit them, which was disappointing because they were actually doing some good.

My chest pain and swollen joints are down and no fevers or stomach issues.

Last night the FDA approved a new drug for Lupus. This is big news for us in the Lupus community. There hasn't been a new drug in over 50 years. It really is cause for celebration.

As I went about my normal evening I kept thinking about what that means to me. Does that mean that because I can't steriods I wont be able to take this? Does it mean that it might actually work? How long do I have to wait for it to hit my doctors office, will my doctor think it will help me? and the big question if I get it WILL I FEEL NORMAL FOR A DAY? That is such a desire of my heart. One day to feel normal, not feel tired, no pain in my joints. I don't want to have a decision in front of me and have to think about what it will do to my body and schedule tomorrow.

I have realized that this drug may not be an answer for me, but it could be an answer for many- and I hope it is. But I also hope that researchers see the hope that this new med has given all of us and continue to work on a cure.

so to my lupie buddies out there- I hope this is your answer... almost more than I hope it's mine. I know this is a step in the right direction!

A Week Later

2011-02-04T09:39:00.000-08:00

So it took a few nights of really good sleep and bed rest to end my flare, but it ended. The IV steriods didn't work as quickly as we had all hoped, but by Saturday I was feeling much better and promised myself that I was not going to go anywhere all day. I succeeded, which was not easy. Instead I stayed at my sewing machine and took breaks when needed.

I also decided to take a sick day on Monday and just veg out. It was well worth it. So now I know if things get this bad IV steriods & a lot of rest is what I need.
I still feel "bruised" but the violent chest pains and swollens joints have calmed down. So onto another weekend. I have promised myself to really take the weekends easy... we will see how long that lasts.

Losing the battle not the war

2011-01-28T04:43:00.001-08:00

Last night I lost this battle with Lupus. This has far been one of my worse flares. Now I know my Lupus is still pretty mild compared to a lot of other people, but this is bad, real bad.

I have gone into every battle (Flare) thinking: Lupus will not define me. I am stronger than my Lupus and I will make it through. Usually that works, but this week it didn't.

None of the meds I took yesterday worked. It was devasting to lay down last night and feel defeated. Wishing that just once the steriods would work, pleading with God to help me through it.

Now outside of my Lupus it has been a tough week anyways, between the enormous fight between David & me and a very dear friend passing away I have been on edge with my emotions (which thanks to fabulous anti-depressants that is very rare).

So last night at about 10:00 pm I lost it. The tears flowed. I haven't cried that hard in several years, but I gave in. Gave in to the intense pain, gave in to the insominia, gave in to the emotional pain. Just gave in to it all. I prayed and prayed and still didn't find the answers I was looking for. I know God is shaping me for a reason. I know God uses my Lupus in so many ways to help others, so I must rely on His strength and not my own and last night I failed.

I slept three hours and that was it. Now I'm up with pain and nasuea debating if I should take more meds. Debating if I should call into work, debating if it's time to put life on hold. But spending the day in bed will make me go completely crazy. I think taking a day for bedrest would be good for my body but bad on my soul. If I spend the day in bed, I will spend it crying allowing my Lupus to take me over. Allowing it to continue to win.

In two hours I will head to work. I will figure it out. I will fight.... at least until 4:00 and then it's home to bed.

I guess I need to learn that I don't always get to win- but it's hard to loose a battle to Lupus but the war is mine.

Another Doctor's Appointment

2011-01-27T15:40:00.000-08:00

As i had mentioned in my earlier blog this week I was having chest pains. I knew it wasn't Pleurisy, although sometimes I wish it was. My Rheumy and I had talked about getting my heart checked out sometime down the road.

Well today I had my monthly appointment with my Rheumy and let me tell you, getting through the last 4 days was the hardest thing I have ever done. My chest hurt so bad at times I was crying in pain (which for me is painful). Pain meds didn't even help.

In talking with her today we discussed a more urgent need for me to see a cardiologist.... oh great a new doctor :-).

we also talked about steriods (for those that know- I am resistant and refuse to take them). After telling her no we had to talk about other ideas.

I feel really good about our chat. I ended up with IV drugs, which I am ashamed to say I can't remember what she gave me, and then three more prescriptions to fill.

I hate leaving the doctor and thinking what did we just talk about or what are all these papers and prescriptions in my purse. I am just a good little patient and follow all my drug rules without asking- is that normal? I don't care what I am taking as long as it works.
So off to the pharmacy. I have high hopes that this will work although I'm told it may takes week to kick in. The IV took the edge from the chest pains, but it's still there. It didn't help with my joints being swollen, but hopefully that will go soon.

My wish

2011-01-24T10:11:00.000-08:00

The hardest thing in the entire world for me is to have people closest to me not understand what is wrong. Today I sit at my desk in silence. The last two days have been full of silence. My chest radiates pain, for more than one reason.

You see my husband, (who is the most AMAZING man in the world, so remember that while you read the rest. he is my rock on this earth, my support system and the love of my life), said something to me on Saturday in a heated argument that hit me hard. It's been a long time since he used my exhaustion against me in a fight. That kills me. I know I need to forgive him, but his words just keep repeating themself in my head.

I know I'm always tired... I know I don't get things done. I know. But what others don't know is what I go through every day watching life go by and me not being able to do anything. Do I want to go home and crash, no. Do I want to have a messy kitchen? no. Do I want all this... NO. I want to feel great, I want get up in the morning go to work come home and be a mom and a wife.

I hate my "internal dialouge" sometimes.

I wish with everything in me I could should him what it's like. I wish I could show a handful of people, but it's not possible. I wish they knew how crappy I wake up feeling, I wish they knew what it feels like to watch others work on things I should be doing around me. I wish they knew. (But I don't think following him around smacking him with a baseball bat for a day is legal- LOL)

I wish they knew what it felt like to have your joints feel like they way 500 pounds and I need to walk up that hill or down a flight of stairs. I wish they knew what it felt like to leave work at 4 and worried that I wont be able to hold my head up long enough to drive home.

I wish they knew how hard it is to say no, when my heart says yes. I wish they knew. I wish they knew. I've shared the "Spoon Theroy" a million times. I know a few have read it, but I don't know if they get it.

I struggle with what to share with him or with anyone. Sometimes I feel like if I say it outloud it will come true and i just don't know how to talk about them.

I wish they knew what it was like. I wish they could walk a mile in my shoes... I wish I could walk a mile in theirs.

My hubby and I will get through this, but it doesn't make it easy. Will I share with him what hurt so badly... probably not because in the next few days we will probably just go back to life like it never happened. So today I sit at my desk... saddened. Debating if I should share this with him. tempting, but I just don't know. I don't like the idea of my friends reading this blog... stupid I know.

Ups & Downs

2011-01-12T14:22:00.000-08:00

It's funny... today I realized that I only posts about the "downs" of Lupus. There aren't a lot of "ups" but today is an up day. I'm actually doing ok. It's wierd to think but my day is almost over and I'm feeling ok. Not too tired, not in a lot of pain. It's wierd to have the good days. They are few and far between, but today I am feeling blessed to enjoy this day.

Just wanted to share with each of you that the good days really do happen.

feeling overwhelmed

2011-01-10T10:13:00.000-08:00

Today I'm feeling overwhelmed. It's that time of the month when all my meds get refilled. Calling them in just reminds me that I'm sick. It's a sinking feeling. One I wish I didn't deal with.

In addition to the RX meds a friend was telling me about all the suppelements her daughter was on too and how much they have helped... which then reminds me that I have become horrible at taking all my supplements. Do non sick people really know what it feels like to have medication bottles lined up on your night stand, in your purse and a back up set you can toss in any bag at any time?

I'm not trying to complain, I'm just overwhelmed. Just wondering if anyone else feels as overwhelmed as I do. Wondering if others look at their supplements and think they are optional and swallowing one more pill each night is hard.

Please don't think I'm complaining... I can afford my meds, I can take them, I can deal with the side effects ( most of the time), I just feel alone in my world where my friends don't get it. Alone in my pain and alone in my thoughts.

Trying to rest in God's arms reminding myself I'm not alone is not always easy.

Social Media

2011-01-07T12:16:00.000-08:00

I am addicted to social media, and when I say addicted I mean I can't go 10 minutes without checking Facebook & Twitter. I am addicted to both of these for different reasons.

First, Facebook. I love connecting with current friends and old ones. It has been so much fun to see what is going on in people's lives every day.

Second, Twitter. I have become a LOT more addicted to twitter than anything else. First I started my twitter account so I could vent about my Lupus on a regular basis. I wanted a place where I could really put out there what was going on and still keep it from my friends... I didn't want people to feel sorry for me.
Then my favorite boy band from the early days joined twitter & I immediately fell in love with all that was going on. I could keep up with my two favorite guys (Outside my family) in the whole world. And I have loved every minute of it. (Have I mentioned that they have both tweeted me? someday I'll meet them). :-)

Then I started to connect with my favorite NFL players on twitter... so much so that when I met Matt Hasselbeck I mentioned twitter and when I told him my name he actually mentioned one of my tweets earlier in the day... I about died... he read my tweets. (I'm a dork I know). Then I had an NFL player at my THanksgiving table because I offered to make him whatever he wanted to eat... all because of twitter. I love seeing the real side of these people.

And finally I have continued to connect with other people who I may never know. A few I have listened to their Lupus issues and encouraged through many issues.

Today another person sent me a tweet saying they too were diagnosised with Lupus... It is always a hard tweet or message to read, but I know that they too will get through this. People I have never met reaching out to me because of their diagnosis. How can I help them? I don't know. Right now I can just be there. Social Media has become an outlet for so many and I feel truly blessed to be able to share my life with so many strangers.

Raheem Brock's article

2011-01-07T07:49:00.001-08:00

Sorry to people that read this blog on a regular basis. I need to post this article to others can see it... feel free to read it.

Page 1

Start page 2 (You read the first column... go to page 3 to finish that column then back here to finish the article... confusing I know

End of first column:

"Tired"

2011-01-05T12:49:00.000-08:00

I use the word "tired" a LOT. So much that I hate using it, I hate feeling it and I hate having to take a break because of it. It really makes my heart sink when I hear those words come out of my mouth.

Within an hour of waking up I'm "tired". After taking a nap I'm "tired". Most of the time I'm tired of being tired, so how do I over come this?

Lately I have been going into debt in the energy catagory. I know that is probably common for everyone during the holidays but this year just seems worse. What makes it so difficult is that I don't know how to communicate to even the closest people to me that I need a break.. or that my body is done. I feel like I have hit a break wall.

Today is Wednesday and I keep reminding myself that the weekend is so close, but them I remember the plans we have made this weekend. But I don't want to cancel them... one is a playoff game for the Seahawks... this will take a weeks worth of energy but is worth every second of it. So then I fast forward and think if I can just make it through to the following weekend.

Will I ever be able to catch up on my debt to energy? I don't know. But I am sure I will fight every day to try.

Drs. Apt a success

2010-12-21T09:19:00.000-08:00

I use the term "Success" lightly. I left with that feeling of not knowing whether or not this was a "Great" appointment. I felt great, but some news had the potenial to be troubling (Waiting on the blood work). Anyways, she really understands me. Knows the right questions to ask and everything.

I started back up on the injections. I am very excited about this, they seem to have worked in the past. The problem for me is that I don't feel like my friends understand what it means. I say all the time that if you are sick please stay away, or at least tell me so I can be aware. Being on a TNF blocker means that if I get sick I have to stop the meds immediately (And I take it every two weeks, so stopping it isn't easy). That means that when I can go back on it I start over. Start getting it back in my system.

Getting sick for me is not what getting sick for a healthy person is like. If I get a cold I also get a flare. So imagine being conjested and dealing with pluerisy or joint pains. Imagine that cold lasting weeks and having the list of antibotics you've try being as long as your arm. And imagine missing all that work.

So to my friends, family and coworkers if you are sick stay away email or call. I wont be offended if you cancel plans I will be over joyed that you thought enough of me to not want me to get sick.

So I'm happily back on the meds. Looking for something for sleep. I have tried everything... well almost everything- tonight a bottle of wine is on the menu- I don't reccommend this I just need the sleep!

My latest Doctor's appointment

2010-12-16T11:53:00.000-08:00

So today I went and saw my Rhuemy. It was really great to see her and laugh and all, but it was hard to talk about what was going on. As you read earlier you know that when I got sick in August I went off everything. I wasn't doing too bad up until a month ago. I have been increasing my pain meds and a few weeks ago I finally got tired of it and made an appointment.

I mentioned two things to her. One some of the chest pain doesn't feel like my lungs, so she doesn't think it's anything but I'm going to a heart doctor so we can get a baseline. My mom had heart issues with her Lupus when she was about my age (Same doctor, and she remembers) so it's better safe than sorry. And two my liver. I have a gut feeling (no pun intended) that something is wrong with my liver. The blood tests say it's normal. But she did more tests and ones that hadn't been done before, so we will see.

So I am back on the TNF blocker and other stuff. She mentioned a GF diet again. I really just don't think I can handle it... I've tried and it is really hard and I have to do it for 6 weeks to see if it makes a difference. I am such a picky eater as it is that if you add that into it I wont be eating anything.

So the bottom line, hopefully going back on some of these meds will help my joints so I can start working out again. My goal is to loose 100 pounds by next year (Every pound is prednisone weight). So here goes nothing...

Hello Flare!!!

2010-12-15T11:26:00.000-08:00

Ahh, another flare. I thought I had been so good lately but not good enough. As I was dealing with one of the issues this morning I kept repeating "I love having Lupus" or "Lupus isn't so bad". I think I thought that if I kept saying it that I could handle my Lupus, that the flare wouldn't be so bad but I was wrong. I noticed the rash last week, but when it went away I didn't think much of it.

So today starts the rice, applesauce and toast diet... so much fun. Again I always wonder why if I have to suffer with with a crappy diet why can't I loose weight?

So Mr. Flare, how long are you sticking around? you see I have a few things today over the next week, including work, so as much as I'd like to have you hang around can you please just go away.

Thanks- Love me.

Advocacy Day

2010-12-15T10:00:00.000-08:00

Definition: The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support more funding for lupus research.

I want to do this, badly. In 2011 it's at the end of February and I plan on going. The problem... I don't want to spend an arm & a leg. So today I posted on my social media that I'm looking for airline miles.
Why do I want to do this? Because I want to make a difference, I want to go to Washington and talk about the need for Lupus research. I want my elected officials to know that people back home need their help.

So here goes, my plea for airline miles is posted here too.

Another great tool

2010-12-14T09:33:00.000-08:00

I found another great toy/tool. An iPad. Now I know, they aren't cheap but I can't believe how great it is. When I can't sleep I no longer have to drag myself out to the living room to watch tv or keep my mind busy I just turn on the iPad. Sometimes it's hard to hold or type on but it has done wonders for me... I just lvoe it.

Tired

2010-12-13T12:30:00.001-08:00

I think the hardest part of having Lupus is the exhaustion. I am always so stinking tired. Monday is the hardest. I do what I can to make Sunday a rest day but I can't do it every weekend (Especially during football season). Today is no different, I can usually make it through but by the time I get home I am collasping on the bed. I can hardly hold my eyes open and most Monday's I'm asleep by 8:30. I hate it, I really do.

UPDATE: I wrote this yesterday but I didn't post it... I didn't want to. But last night was a HARD night. Not long after dinner I kissed my boys good night and crashed. Falling asleep at 7:00 is not the greatest idea but I couldn't hold my head up any longer. It's sad that my bed time is before my 9 year olds.

I ended up not sleeping well which makes today harder than yesterday. I feel every rain drop in my joints. Last night i just didn't feel well, couldn't get comfortable. Life just sucked. I'm tired of being on pain meds. Tired of waking up feeling crummy. Will it ever end?

Ok, now that I've let that out, I've decided I'm going to really focus on loosing weight. Prednisone weight is extremely hard to loose. I've tried a handful of times, but this time I'm going to do anything I can... plus I'm not on any meds right now so nothing can hinder it.

Lupus & Traveling

2010-12-08T08:32:00.000-08:00

***DISCLAIMER- if you are the person traveling with me there is NOTHING in this posts that was negative towards you... it's just my internal thoughts and frustrations with myself***

So a couple of weeks ago I won a trip to Las Vegas for the American Country Awards. My first thougth was to take my husband, but he doesn't like country music so I asked my dearest friend to go with me. When I did this my Lupus didn't come to mind. You see when I travel I get pretty sick, and this trip was no different.

First, we didn't have a direct flight. That should have been a red flag for me, but it wasn't. We had to get up at 3:30 am to catch our flight and ended up traveling for 7 hours before finally touching down in Las Vegas. It takes a lot of energy to change planes. Carrying luggage from one gate to another.

I was very excited to know that is wasn't going to be hot in Vegas... it was perfect right around 50*. So I didn't think my stomach issues would come into play but boy was I wrong.

So we finally crashed at about 9:00 pm. It was a rough day, I was exhausted and beyond my number of "Spoons" for the day (maybe even the week).

My biggest frustration was having my friend see my sick. It was so hard to make 17 trips to the bathroom, not being able to eat and having to call it a night so early. I know this is something I have to get over. And someday I will. But this was a hard weekend. I know it will take a few days to get over all I did.
So today I start resting and getting ready for another weekend full of Christmas events. I can't wait for the holidays to be over.

Life is funny

2010-12-01T10:23:00.000-08:00

Life is funny, isn't it? Today is a bad day, it's been a bad week. I'm tired and my pain level is through the roof. I just want to crawl under a table. I haven't seen my dr. since July and honestly, I don't want to. I keep staring at the phone telling myself to call, but I just can't. I can't because it means new drugs. Or old drugs that I have tried and failed on before.

Having Lupus has it's ups and downs. (Wait- who am I kidding- what ups?). The meds I try are crazy, the side effects are nuts and frankly I'm tired. I'm tired of the medical card in my wallet having to be changed every six weeks. I'm tired of wondering if the new symptom is a side effect. But most of all I'm tired of finding a drug that works so well only to have it cause a side effect so unbearable I can't stand it.

Lupus is definately a game changer for me. I quit playing softball, I rest more than I play and just last month I stepped down from a volunteer job that I have loved for 15 years. One of the hardest things I have had to sacrifice because of Lupus. But I know that there will be other opportunities for me to help others that wont cause me and my family the sacrifices I don't want to make.

Lupus is a thorn in my side and yet, because of it I have met new friends. Cried with old ones and been there for those going through this dianosis.

Bottom line- I love my life. If a cure for Lupus comes I will be first in line, but for now I will hold my head up high and try and do everything I can to just get through my day.

Support system

2010-12-01T10:15:00.000-08:00

Last night I was reminded once again what an amazing support system I have. It also reminded me of those that don't have a support system. I don't know how you go through your life without one.

My husband has been at my side through thick and thin. It hasn't been all roses, we have had our ups and downs.

I have a full time job. Mainly, because I have too. I don't mind working, I actually enjoy it most days. My family needs me to have the job. But because I work some days I get home and have nothing left. I collapse on my bed. I try to get up after Dave gets home and help make dinner but 9 times out of 10 he wont let me (Although, this might be because I can't cook). I suffer from guilt. I hate hearing my son giggle in the other room and have no idea what's going on. I hate the idea of feeling like I need to push myself.. but not being able too. I hate the internal battle I have of "Am I really out of energy today" or "Am I just lazy?". It's hard because my mind says go, go, go, but my body says not a chance.

My husband is amazing, he knows when I am at my wits end. He knows when I just need to sit down. He is amazing. I am so thankful for the man that God brought me. I am blessed.

What to do....

2010-11-15T11:23:00.001-08:00

It's Monday. It's a very difficult Monday. I didn't really think I had over done it over the weekend but apparently I did. I tried my best to rest, sat when I could. Fell asleep before 10:30 and yesterday I spent the afternoon in bed.

And yet when I woke up this morning I wanted nothing more than to stay in bed. The problem. No sick time. I have used it all up and I am reluctant to use my vacation time for days off. But as I sit here at my desk I feel like I am going to loose it. I am going crazy. I would give my right arm to lay down, cry my eyes out, scream in pain. This really sucks. Tylenol is doing nothing and I can't take anything stronger at work... what a huge frustration.

I love my job, I love working and right now I can't afford not to work. Life is so frustrating and such a challenge. How do I manage to sit here for 8+ hours a day? I really need a vacation. Can I make it through this week... I don't know. I know today I will go home and spend the entire evening in bed, leaving my wonderful husband to cook and take care of my 9 year old.... but I really don't have a choice. I need something.. maybe a million dollars so I can take a few years off. :-). So today I will continue to sit at my desk, fight back the tears and pray that 4:00 comes much quicker than normal.

One of the Most Frustrating things about having Lupus

2010-11-10T09:36:00.001-08:00

Let me just start this post by saying my Rhuemy & PCP are AMAZING. This post stems from issues with specialist.
The first most frusting things is when I am dismissed. In August I was really, really sick. I spent days in bed, a trip to the ER and trip after trip to the doctor for tests and IV fluids. Both my normal doctors were on vacation but I saw a new family doctor who didn't dismiss me, I was amazed. I know my body better than the average person. I know when I have a fever and I know when it's not Lupus. After a few weeks I went to a GI who did more tests and I learned that everything was "fine". So there it was "It's Lupus".

It is really frustrating. Now I am dealing with new symptoms. I am dizzy all the time, my core temptature has dropped to 94.5* and these headaches are INSANE. But it's Lupus.

The dizzyiness makes me so sick. walking down the hall is intersting, I sometimes wonder if people think I'm drunk. But of course it is blown off, I have Lupus therefore they can't help me, unless I want to take steriods and steriods don't work.

The core tempature thing is really interesting. I didn't know that it WAS lupus related. I had never heard of this side effect, but it really sucks. Frist of all I'm cold all the time! When I get home from work I usually take a burning shower just to warm my bones & joints up. then I crawl into bed under 5 or 6 blankets and a heating pad just to warm up. This is also an issue when I go to the doctors & they ask if I have had a fever. I know when I have a fever, if I'm "normal" they think nothing of it. to me 98.6* means I am clamy and sick. So if I am asked if I have had a fever I say "yes, but I don't know what it is because I don't take it, I just know when I have a fever". So now to find a cure for being cold, because nothing is more miserable than spending my day shivering or in so much pain from my cold, cold bones.

So I guess I just need to learn that most things are "just Lupus". But what if something isn't "Just Lupus"? what do I do then?

From My Heart

2010-10-05T17:32:00.000-07:00

I have a feeling I have really annoyed some of you with all my post for the Lupus Walk, but it is really important to me and let me tell you why.

First, of course, I have Lupus. But I hope that many of you don't actually see it in me. For some reason I try to hide it. I don't want to be discounted because of Lupus so I do everything I can to make it "go away" when I'm around others. I know I fail sometimes, but I try.
I have had Lupus for 10 years and as Lupus does it affects each person differently. For me it mainly affects my Lungs and joints plus the exhaustion I deal with plus a number of other small things.
I live in pain 90% of the time (the other 10% I'm medicated) :-). Small things are extremely painful, holding a pencil or handle for too long, sitting in one place, walking across a room and so on.
I am lucky if I go a month without seeing a doctor. as soon as I get a cold it is only a matter of time before it becomes a serious infection. And don't get me started on all the medication and thier side effects. I take some meds just to off set the side effects of others.

Secondly, two years ago I attended the Seattle Lupus walk for the first time with the invation of my Lupus buddy Gracie (Then 7 years old). It was a lot of fun but I wanted it to be bigger so I contacted the office to join the committee for the following walk.
Last's years walk was my first as a committee member and even with the rain DUMPING down we had record numbers. 700+ attenders, $70,000+ in money raised. It was amazing.
This year I want to see those numbers go higher, even though they are slowly creeping up there I am getting nervous with just 11 days til the walk. The success of this walk is such a strong desire of my heart. I don't want someone to hear the word "Lupus" and ask what in the world that is, or is that serious. I want to out grow Magnuson Park. I want Purple to be as noticeable as Pink.

So I ask, encourage and beg you to join in with this walk in 1 of 3 ways:
1. Join our team! We have a ton of fun
2. Donate to our team. Even the smallest amount will make a HUGE differnce
and/or
3. Repost this. Share it with your friends and family. Let's raise awareness... and if you have Lupus please add how it affects you... since it affects each of us differently your story could make a huge difference.

You can Click here to donate or join our team

And for another great story of how Lupus affects others, check out the Spoon Theory Click Here

2010-09-15T10:28:00.000-07:00

Reposting this note I put on Facebook today:

It first started just over 10 years ago. A couple of weeks after David & I got married I was in and out of the doctor’s & ER with chest pain. I had several tests done, my heart & lungs were normal, so there was no explanation for what was going on.

One month after it all started, I was talking with my mom & she asked if they had tested me for Lupus. At that time Lupus was a disease my mom had, that is all I knew. So I went online and did some of my own research. I learned that I had 7 of the 11 symptoms, the only thing missing was a blood test to confirm the diagnosis. I headed to my doctor’s armed with new information and the request for a blood test. I was surprised to find that it took her some serious convincing to get her to order the test. She told me I was too young and that even if the test was positive it was highly unlikely that I have this disease (I was 22 at the time).

The ANA test takes a week to come back and I anxiously awaited. When I got the call that it was positive I immediately made an appointment with my mom’s rheumatologist, the best in the state . We discussed my symptoms and took more blood and moved on with the treatment.

During the first 3 years I took drug after drug, none worked. At one point I was on such heavy doses of steroids that my liver started to have issues- not to mention the weight I had gained. So I finally stood up and said enough. The put me on oral metho and the side effects were so bad, but at that time I lost my medical insurance, so I was on my own.

I then took a couple years off with no treatments for my lupus, I was in severe denial. Someday I may regret that denial, but for now I am learning to live on medication. Learning that pain is a constant and to stop blaming my pain & to stop making excuses for every little pain, or side effect to the disease I face. I know I can survive this, and I know I will survive this but it is only with God’s strength & love that I can get out of bed each day

Now I am back on trying new meds and seeing what works and what doesn't. I still refuse steriods, even though my doctors always mention them as a first step to whatever is bothering me. I am living my life trying not to make "Lupus" define my life. Yes, I should probably slow down, yes I should learn to say no more often. But for now I am going to continue to do what my heart wants with the amazing support of my husband and family.

So today I post this note because on October 16, 2010 is the annual Seattle Mad Hatter, Walk, Run & Roll for Lupus. This walk is importnat to me on so many levels. One, I am on the planning committee and it's something I am passionate about. Two, It is an amazing feeling to see so many friends & family come together for me and Gracie. The support I feel on that day gets me through so many bad days. and three, it's a good cause. One that doesn't get much attention but needs it. There hasn't been a new drug to treat Lupus in over 50 years! It's time to start standing up and making a difference in this disease!!

I hope you can join our team and walk with us on Oct 16th. if you can't, would you consider donating to our team

http://bit.ly/bLR64O

Friends

2010-06-05T13:54:00.003-07:00

I am posting this from my phone while camping, so be kind and pantient with typos.

I am frustrated...... I don't know how to get my friends to realize that I'm sick. They know I have Lupus but they seem to forget.

Right now I'm camping with a large group of friends and when I say I need to go to bed early or take a nap they want to know why and they are annoyed- or at least that is how I take it. Maybe I'm taking it wrong? I don't know. And it's not everyone. Sometimes it's the ones really close to me. I don't want to say " my chest hurts" or "I'm tired because of lupus". I don't want to draw attention to the fact that I need extra care. How do I tell them that so they will hear me?

Friends

2010-06-05T13:54:00.001-07:00

Change, Change, Change

2010-04-26T13:08:00.000-07:00

I hate change. I don't handle change well, especially when it comes to my health. I have had a headache for 6 weeks. So I had the regular battle of do I see my PCP or my Rhuemy. I opted for my PCP because I hadn't seen him in a while. After a week of trying a couple of meds I went back and he decided it was time to try Prednisone. Woo! I hate that drug, it doesn't work. But I agreed.

So today I saw my Rhuemy for a routine check up and talked about the headaches and it is possible that the medication I take for my chest pain is causing the headache. So now I have to decide if I deal with the headaches or the chest pain. This is so disappointing. they both are annoying in there own way.

So I will go off it for one week and see what happens. If the headaches stay I have to have more tests done. If the headaches go I have a terrible decision to make.

moving day is coming

2010-04-12T13:57:00.000-07:00

Oh boy. We move from an apartment to a 5 bedroom house in just 5 days. Aside from the actual moving part I'm doing ok. But this weekend made me realize that I really can't do anything.

I tried to help my parents move their stuff downstairs and I couldn't do it. what am I thinking?

I am really glad our friends have jumped in but I just don't know if I can stand on teh side and do nothing. This weekend is going to be crazy.

just thought I would share.

Pain

2010-04-09T08:21:00.001-07:00

In the last few months my pain has been managable, but today it's gone through the roof. I have taken everything I can take while at work and nothing is taking the edge off.

I hate it when pain takes over every thought. I just want to forget about it and have it go away.

What's it like?

2010-04-07T13:02:00.000-07:00

Sometimes i dread this question and sometimes I yearn for the right person to ask it. I want those that care to ask. Friends that have been there for years and years and still don't understand. But I also don't want to tell someone that is just asking to kill time or show sympathy.

I have accepted the pain, the drugs, the doctors and all the unknowns. This week has turned into an interesting one. I went to my PCP on Monday about a 3 week long headache. To me going to the doctor was a waste of time since I knew the answer would end up being "just Lupus" but with all the people nagging me I figured I would kill two birds with one stone and ask about a side pain that was getting worse. And of course, my addiction to social media sites meant that I would share where I was. But I wasn't ready for what people told me.

"I'm sorry" that's what they said. I want to scream. Did you give me Lupus? then don't say you are sorry, cause you have no reason to be. It drives me crazy and really I know these people are just trying to give me some encouragement and show they care. But the words "I'm sorry" don't show me that. I don't want people to apologize for me having Lupus. After 10 years of dealing with it I have accepted it as my path in life and I am going to do everything I can to make sure I follow it as best I can and share my pain and resources with the many others that have it.

My other issue is friends that have been around me for years and still expect me to pitch in or go out. I can't always do the things I want to. Maybe I have been "faking" it too much. Maybe they can't see that holding a handful of playing cards is crazy painful. Maybe they don't see that when we go out on a friday night I spend Saturday napping off and on. Maybe they don't see that the weekend getaway would take me another 2 days to survive.

And i know that some of their ignorance is my fault. I don't want to talk about it publicly, I don't want to draw attention to myself when I am feeling the worst, and I don't want you to make me feel bad for having to say no.

As I am writing this I just realized that this month marks the 10 year mark to my diagnosis. Wow 10 years. Part of me wants to weep and the other just block it from my mind. It's hard, really truly hard. But I know my Lupus only effects a fraction of what it does to others and I need to be greatful that it hasn't gotten worse.

tomorrow I go in for a CAT Scan of my liver. We will see what happens in there. I really hope this is just nothing, but I fear it is something....

2010-04-05T10:45:00.000-07:00

Once again I have failed to update my blog :-(. I really need to get into a habbit of taking care of this blog. So once again, forgive me.

A LOT has happened since mid January. My family & I went on an 8 day vacation to Orlando. It was AMAZING! But I spent a few weeks after to just trying to get over the travel and all that came with it. I did think it was well worth it.

February came and went & so did March. So hard to believe.

3 weeks ago I started getting headaches and finally went to the Doctor today. So I start some more Rx in hopes of dealing with it... the list of drugs I take is getting longer & longer. Hopefully it will take care of it though so I can go a day with out head pain.

I also asked the doc about a side pain I have been having. He checked it out and immediatly ordered liver function test and an immediate ultrasound. GOOD times!

So the Lupus fight continues. I'm sure I will waste my time on all these tests only to be told "it's just Lupus".

My new favorite item

2010-01-20T09:17:00.000-08:00

My new favorite gadget. I have to say I LOVE, LOVE, LOVE this. I hate having to ask my husband to open my pill bottles and with my kids in the house I don't feel right about getting regular caps.
This tool is a wonderful gadget. The magnifying glass may come in handy some day but for now it just opens my bottlesClick here to learn more

immunosuppressant

2010-01-13T08:20:00.000-08:00

I have a love hate relationship with my immunosuppressants. I LOVE what they do to me.. I feel so much better when I'm on them. My Lupus rarely rears it's ugly head and I have enrgy and no pain. I just feel fabulous.

My hate is because if you get sick you have to go off of them until you are better. So right now I take one shot a week. On Monday night I knew I should have held off a day or two because my brother and his family spent the whole weekend at my house and his wife & both kids had a cold. But I thought, no... I wont get it. Sure, I've kissed, hugged, shared food with my nephews but there is no way I'm getting sick- I feel great! Well today I woke up with a soar throat and nose issues.... NOOOOOOOOO!
so when Monday comes around I will need to make a decision. take the shot or not. last time I had to go off my shot I suffered horribly. So here is to hoping that my body will kick this cold ASAP and not have me make a decision to take it or to not.

Why can't I sleep????

2010-01-07T12:56:00.000-08:00

You know what sucks about not being able to sleep? that you can't get up and do anything cause you will wake others up and you are begging your body to just drift off. not being able to sleep is sign one that a flare is coming. Some would think that my body would be CRAVING rest when a flare is on it's way, but no. Mine says "time to get up".

I am a greedy sleeper. I like my sleep and I do not like to loose one minute of it, so you can imagine that I am VERY cranky today. I have a big weekend ahead and i don't have time for a flare.

Hmmmmm.... now that I type that, I realize I say that every time I have a flare.

Happy Thursday!

Joints

2010-01-05T14:04:00.000-08:00

JOINTS: (N)
1. junction between bones: a part of the body where bones are connected, e.g. the knee, elbow, or skull.
2. junction between segments of invertebrate body: any of the points of connection between movable segments of the body in an insect, spider, crab, or other invertebrate
As I see this definition of the word "Joint" it makes me chuckle. Joints to me are more than just where the body connects... they are a source or REAL pain. My last chest xray showed signs of arthritis in my back- wait your back has joints? I am always shocked to learn something is a "joint" because I never really thought of it that way. My ear pain, is actually my jaw- which is a joint! this probably doesn't shock most people but it shocked me... just another thing to blame on Lupus.

Today my index finger is in severe pain. I'm trying not to use it at all but when my job is sitting at a computer that makes it IMPOSSIBLE. I look like a dork trying to type with nine fingers and I'm dealing with a TON of typos.

Cori's definition of Joints:
A source of pain, a place where your body connects and can cause severe pain at times.
I wish I knew what I did to my finger but I'm sure it's just Lupus related as everything else is. Time to continue my week.

I'm back

2010-01-04T11:14:00.000-08:00

It's a shock I know. But I think it's time to start keeping track of all that is going on in my Lupus world. I sure have missed having a place to dump it all and recent comments made me realize that people are actually reading this!

The remainder of this year was ok. I had some severe flairs and one that lasted several weeks. I am getting better at managing them, but sometimes the pain is just so unbearable. I also decided to help out with the Seattle Lupus Walk in October and had such a great time I decided to sit on the committee again. It was so awesome to see our ideas and hard work become a huge success.

In November I suffered a BAD flair with massive chest pains. It was to the point that I couldn't move. My Lupus Dr. decided to try a new medication with me, one that isn't treated for Lupus. After being on it for 4 weeks I was amazed at how I felt. We then tried to push the expensive ($2,000 a month) drug through my insurance and with a huge praise they paid it! God is so great!
I have been on it 6 weeks and it still seems to be working GREAT with little side effects. My Dr. thinks that by the time we go to Disneyworld at the end of the month I should be 110% better and wont need any assistance while I'm there (wheelchair) which makes me even MORE excited!!! WOO!

So that was the rest of my year. I hope to keep this blog up from now on.

70

2009-04-30T09:48:00.000-07:00

70, that is the magic number. The crappy number, the number I hate. That's the number of pounds I have gained from lyrica in 9 months. Now I will be the first to admit I don't make some of the best eating choices, but 70 pounds is a little much. The Lyrica Manufactors claim that weight gain is a small percentage of people taking it. Well it's not and the weight gain is crazy. I don't fit into any of my clothes and honestly if I have to by a bigger size pair of jeans I will ball my eyes out. I have never been this big and I refuse to go up a size, so for now I am SQUEEZING my butt into these jeans.

My rhuemy is taking me off the lyrica 100%, I am so happy. SHe's gonna put me on something else for a little while. I am also on strict instructions to use my lunch breaks to get fresh air.

I am in the midst of a flare, mainly cause I am not sleeping that well and my flares are associated with my hormones as well.

Other than all this crazy stuff, life continues to go on. I was blessed to get an email from a reader of this site. I didn't really know others followed it. She has Lupus and has dealt with some of the same situations I have. It was really neat to read her email (I actually read it twice). I love knowing I'm not alone and others have the same expierences. Fight for people to liste!!!
I started a twitter page where I am doing updates daily on my lupus stuff. You can follow me there at www.twitter.com/corilewis. I am going to find out if I can put a twitter feed on this site so the updates comr through daily.

So it's been a while...

2009-04-24T08:30:00.000-07:00

Are you surprised?
I haven't really wanted to update this blog, for a couple for reasons. First, I'm tired of the same old stuff and writing it all down just reminds me of that stuff. And two, does anyone really read this blog? I found out the other day that at least one person does because they emailed me asking me if I was doing better. Bottom line, I'm the same.

One of the things I did do differently was I went to my primary care physican after having a whole day of pain in my lymph nodes being so bad my right arm was useless. He sent me in for a mammogram in hopes of looking at the tissue, muscle & lymph nodes all at one. That was two weeks ago and I still haven't heard from him. So I wait. I'm going through another bit of no sleep. I finally got a rx for a sleeping pill, but it has yet to work. I see my doctor next friday and I hope to get some answers.

The pill I started finally kicked in and from an antidepressent stand point it is the best drug I've ever had. but as far as pain management I could take it or leave it. I don't want to go back on the other cause I need/want to loose weight.

I hope this is a good update. Once I figure out Twitter I'm going to start posting an update every day, if not more, so you can follow me there. Also I'm on facebook and that is probably the best place to find me :-).

Here is a little joke I put on facebook a little while back.

Ok, for the last several months I have been annoyed and struggling with everything I have dealt with and when a doctor says "Sorry you have Lupus, I can't help you" it is the most annoying thing you can hear. So lately I've realized, I can blame so many things on Lupus.
(Please note, some of these are true, but some are mostly for my own amusement. I don't plan on affending, but, you never know).

--have chest pain? it's not a heart attack... it's Lupus
-- 4 hours in the ER, finally the doctor comes in. barely looks your way and doesn't even touch you... he's response " You have Lupus and Fibromaylgia, I don't know why your here, there is nothing I can do for you".
-- I've known you for years and I've forgotten your name.... sorry it's Lupus
-- Stubbed my toe and yelled out a bad word- that's definatly Lupus
-- Eye doctor says the viens in my eyes are very abnormal... oh wait she just notice you have Lupus!
-- Can't eat much cause anything can set off some nasty GI stuff- that is DEFINATLY lupus
-- Gained 50 pounds in 2 months? It's not what your eating it's the meds
-- Your friends think you are crazy- that's the meds- from Lupus
-- can't get your words out of your head and your speaking in a large group? oh pardon me have an incurrable disease that causes me to be on crappy drugs that make me dumb... it's LUPUS
-- did I call you a bad name? I'm sorry I have Lupus
-- Did I forget I borrowed $10.00? eerrr no really that's lupus
-- laughing uncontrolably at something really dumb? Sorry I have lupus and I'm hoping laughter will heal it.
-- did I burst into tears after laughing? That's the steriods that make me crazy emotional.
--Did I just smack you for no reason? Sorry Lupus causes uncontroable muscle spasms.
--It's 5:00 and I'm in my PJ's resting in bed- yup you guessed it Lupus
-- You heard me snoring? at my desk? are you sure? well, then sorry I have lupus and it can cause me to fall asleep unknowingly... and the fact that I'm curled up on the floor only means I fell out of my chair... I didn't curl up there in hopes of not being caught.
-- Oh that's not a candy jar on my desk, it's my pill box, hands off. Those happy pills are for me. DUH.

I hope to come up with more... more funny ones. I hope someone found this funny, if it's not funny to you sorry, my humor is really bad cause of all the meds I'm on from Lupus.

March

2009-03-11T09:47:00.001-07:00

It looks as if my updates are monthly, but I guess that’s better than none. There isn’t a lot to update you on, just the same old stuff. I am hoping the new medication kicks in soon. I am in intense pain. The breaking point was when I couldn’t quilt on my machine last week. My doctor has upped my pain medication, so that is taking the edge off, but popping pills is not always the first thing I think of. The exhaustion is overwhelming. There is so much to do in life and my wonderful husband has had to pick up a LOT of the slack, which makes me feel guilty (he doesn’t make me feel guilty, it’s just me). Josiah has been great, we are coming up with things to do together that I can do while resting like reading or puzzles. I have been teaching him how to play Sudoku and he loves it. It’s fun to do things like that together. I will update when/if the meds start working. I need to get back to life.

2009-02-24T11:01:00.000-08:00

Life is so interesting. The sleep didn’t get better right away, as a matter of fact it got to the point of where I went two full nights with no sleep. By Sunday afternoon I was so out of it and I started to become sick with a cold and had all the signs of having the start of a Lupus flare…
So I have slept pretty good, in the last week, mainly cause of Nyquil.
This flare seems to be a big one, it seems to have a lot of symptoms, some aren’t too bad, but others are painful. My lymph nodes have swelled back up and they are so painful. So back to square one.

Other than all this fun, life is pretty normal. I work at trying to take it easy but that doesn’t always work. David has now caught the cold I got, so I am waiting for it to come back my way .

2009-02-02T09:25:00.001-08:00

Life has been incredibly overwhelming lately. Not in a particularly bad way or a good way, it just seems crazy. I went to my doctor last week to ask about the new Fibromyalgia drug. The one I’m on now has helped me gain a lot of weight in a short period of time and I really need to lose it since it is affecting my ankles. So the new drug isn’t out yet, but there is another drug I could try. So I am weaning off the first one & starting the second one. The first one seems to working its way out of my system fairly quickly and the second one is taking it’s time working into my system. I will be glad when this is over, and I really hope it works! But in the meantime I am being reminded of how I felt a year ago. I really don’t know how I survived all this pain and lack of sleep.
So that kind of catches you up to my health stuff. I am sleeping 2-3 hours a night- if I’m lucky. David & I bought a new mattress that we set up tonight- so I’m hoping that helps a little. It’s much better than the one we had.

Just had to share my laugh

2009-01-05T10:32:00.000-08:00

So now I am going through life learning to accept the fact that yes I have Lupus. I now find it funny that any doctor I see (that is not my Rhuemy) assumes that whatever aliment I have is "Lupus". It was frustrating at first, but it's ok now. I am just going to start asking "if I didn't have Lupus what would you say?" I may not make any friends, but oh well, these doctors need to know that they need to be sure they can't figure it out before they blame Lupus.

What made me come to the realization? I went to the eye doctor and she did the whole exam and towards the end she said the vains in my eyes are very narrow and curvy, which is caused by Lupus.

So I have Lupus, I am going to live with Lupus and fight Lupus. I may get frustrated, I may not feel good, but it's ok. Life will continue whether my body wants it too or not.

2008-12-30T14:08:00.000-08:00

It’s been awhile since an update. So here it goes. The flare seems to have leveled off. In the mean time I have been seeing an ob/gyn for other issues and recently had surgery to check out what’s going on and at the same time they did a tubal ligation. The reason I am telling you this is because the doctor found nothing… which means he gave me the answer to all my problems:

It must be Lupus.

I could SCREAM. I am SO sick and tired of this. I would like to go to a doctor and not tell him my medical history so they can actually trouble shoot instead of look once and assume. I know- I am making a claim against the doctor that he didn’t do fully do his job, however, I have been dealing with so much that it seems everyone blames Lupus. Lupus is like a terrible hang nail that you can’t get rid of… Your knee hurts? Oh it’s just that hang nail… your neck hurts? It’s that hang nail, sorry can’t help you. I am so terribly frustrated. I am fed up and done. I am ready to stop complaining, everything is Lupus related and no one can help or really cares.

Wow- that was a lot to poor out, but I guess I needed to say it. The bottom line is that it sucks to have it all blamed on Lupus.
I hope to stop my birth control which should help with the hormones, and I am hoping it lessens the flares I have in relation to the hormones. And I am now debating a break from the Lyrica. As I have said before, Lyrica can block your body’s ability to lose weight and I am gaining weight quickly. I am miserable and unhappy with my current body and I want nothing more for it to be manageable, but it means going off the one drug I feel is working. This is so incredibly complicated and frustrating I just don’t know what to do.

Update

2008-12-08T17:23:00.000-08:00

Last night I came home from the Seahawks game. I knew I was going to pay for the weekend I had, I just didn't realized. I got home with head congestion so bad that I couldn't keep my eyes open. I broke down & took some nighquil, but it didn't kick in. I cried the pain was so bad. My whole body ached. Colds suck because it seems to me that they also feel like the flu, achiness, fevers, congestion, sore throat and such.

So when I woke up this morning I still hadn't slepted off the drugs so I opted to stay home from work. I have been miserable ALL day. My only hope is that MAYBE this is what I have been fighting the last couple of months & it has finally come to light so I can go away. So I am now going to shut my computer off cause my head hurts, and I shouldn't have gotten on it to begin with, but you know those withdrawls can really get to you!

Another update

2008-12-01T09:45:00.001-08:00

My flare continues. It really sucks. I have been in and out of doctors appointments and nothing. My lymph nodes continue to be swollen and all my labs came back “normal” for me. It may be that I am just getting virus after virus and my body has just not had time to heal. I am so frustrated. I am back to not sleeping and I feel like my chest is going to explode. It is just so annoying.
So I continue to fight, continue to try and rest, continue to live life.

2008-11-13T08:01:00.001-08:00

Wick Davis, who rights the Lupus Foundations blog asked that I post this on my blog & I am happy to participate...

50 Years Without a New Lupus Drug! What Does it Mean to You?
Share your stories with Congress and Encourage Researchers to Keep Up Their Effort

Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.

A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.

We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus. At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.

So what does 50 years without a new lupus drug mean to you?

No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.

How can you help? Share your story!

Please help by sending a two part email message to 50years@lupus.org as soon as possible but before November 20.

In the first part of the email, write a short message (about 150 words) that explains to Members of Congress what 50 years without a new lupus drug means to you. In the second part of the email, write a short note of appreciation that explains to researchers and industry executives how grateful you are for their efforts to develop new safe and effective treatments for lupus.

Please include your first and last name and your city and state in your email. If possible (but certainly not required), please also attach to your email a clear photo of yourself so we can personalize your message.

We will use your email message in several ways to help advance the science of lupus!

Deliver your message to Congress.
During the LFA’s Annual Advocacy Day, lupus advocates will deliver your story, and the stories of others, to policy makers in Washington, DC. Be sure to include your name and your city and state in your message so we can deliver your story to your Representative.

Feature selected stories on the LFA website. While we are not able to promise that we can post every message and photo we receive, we will review each one and post as many as possible to our website and in our blog so the public also can learn about the impact of 50 years with no new drug has on people with lupus and their families.

Share your "Thank You" notes with Researchers and Industry Executives.
Today there are hundreds of dedicated researchers and executives from pioneering biotechnology and pharmaceutical companies working hard to advance the science of lupus and to conduct clinical studies of nearly 30 potential new treatments for lupus. We want these individuals to know how much you appreciate their continued focus on lupus.

We Need Your Help Now! Act Today!

Send your message and photo today (or by November 20) to 50years@lupus.org. Then, on Thursday, November 20, visit our website to read the messages and learn how the LFA is taking steps to address this urgent problem.

Ask Others To Get Involved!

Please share this request with others who also have been waiting as long as five decades for a new lupus treatment! Together, we can raise awareness of this issue and urge our elected leaders to provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus.

Jumping for joy (in spirit)

2008-11-10T13:25:00.001-08:00

I went to my rhuemy today cause my lymph nodes have been swollen in my neck, upper chest and arm pits so I headed into the doctor in hopes of some solution. Well after dicussing this last flare she stated that this was not a flare, but a viral infection that is going through children. It usually last 24-48 hours but since I have a comprimised immune system, plus medications I have been suffering for weeks. I was SO excited to get this news. Then she did her exam of my lymph nodes, check my ears & looked in my throat- only to see a sign of strep throat- WHAT? I have had no pain in my throat- or at least I don't think my throat hurts- with all the other pain who knows. So my spirits are up, sure there is no medication for a virus, but an answer it what is important. I'd be jumping around singing God's glory except I only have the energy to sing it while sitting down. God is so good. He has gotten me through another battle of my life long war.
YAHOO!

Back to work

2008-11-05T14:04:00.000-08:00

I took the last two days of work off in hopes of sleeping off whatever I am fighting. I managed to keep my meals down all day yesterday and fought off the urge for a nap. That forced me to fall asleep early last night, but it was well worth it.

Today I headed back to work & my body is screaming at me to lay down. I ate breakfast ok, but lunch made a revisit. I am really frustrated with this. So it's back to soda crackers.

I got the nerve to ask my SS class for prayer, well at least just emailed the ladies. I didn't realize how encouraging they would be. The responses have come at the perfect time. It is so good to know I have such an amazing group of friends.

Tonight is Wednesday, which means AWANA. My partner in this fabulous ministry has told me I will be sitting down all night doing paperwork, not my favorite thing, but I know I need it, so I am going to accept it and move on. I'm just nervous cause the bathrooms are so far away and if I have to throw up what do I do? Boy oh boy chronic illness is so much fun! I just can't believe all I go through.

I am curious about Lymph Node issues though and of course I can't find much. If you happen to know of any sites that would be good for information please comment. I can feel the lymph nodes in my neck, arm pit, under my breast and by my collar bone and they are swollen and painful. I don't see my doctor for another month and I hate to call her and see if it's a big deal.... I know I should call, but I was hoping to find something online to see if it is something I should worry about.

I hope you are all having a better day than I am :-).

Defeated

2008-11-04T09:25:00.000-08:00

I have worked SO hard the last 9 years not to be defeated by Lupus, but this current flare has taken EVERYTHING out of me. I am trying so hard to be positive but it's taking more energy out of me than I care to spend. How do you stay positive in such turmoil.

I haven't been able to eat anything substanial in 5 days, that is really what is wearing me down. I wish I could loose weight when these flares attack my digestive system, but no. If the flare had some bennifits I'd say "bring it on" but it doesn't :-). Anyways, just wanted to keep you updated.

Update

2008-10-30T12:04:00.000-07:00

I am tired. Incredibly tired. I am tired of being strong. Tired of hiding my pains and my exhaustion from those around me. No one has asked me to hide them, but I do. I don’t want others to feel sorry for me, or to take “special care” of me. I just want to be treated normally. But I am tired, and I feel that I don’t have the strength to hide my pain anymore. It seems so weird to say, but right now things are bad. I have been flaring for two weeks. Now I feel a cold coming on and life is not slowing down for a couple of days. I refuse to miss Halloween with my son, so that will take most of my energy for the weekend. I’m glad I don’t have many plans on Saturday, but the idea of spending the day in bed is overwhelming sad. I want to be involved in my family’s life. Overall, I’m tired of being strong. Is it okay to let it go? I don’t know, I don’t want pitty, but I want people’s care- does that make sense?

The other big issue is I am having other health issues and I go into a specialist on Tuesday. I am very scared that he is going to take one look at me and say “It’s Lupus”. I may lose it. So stay tuned to see how that goes.

A close co-worker came to me yesterday and told me her daughter was just diagnosis with Lupus. I actually started to cry- which probably scared her a little. But I don’t want another person to have to deal with this, I want to take action, I want to yell from the roof tops that we need to make awareness for this disease as high as we can and stop it. But how do I do that- I am just one person.

Lots of questions, no answers. I emailed the Pacific NW Lupus Foundation to get involved but haven’t heard from them, do I really want to work with a nonprofit that doesn’t communicate with people who are asking to help? They even have Board openings and I would love to know what that would entail. It’s time to make this disease known!

Thanks for listening to my random thoughts.

Another Monday

2008-10-20T09:05:00.001-07:00

I went home and was really sick. It’s still two days later and a meal has not stayed where it belong. I just wish I could lose weight when I get like this (LOL). I went back on the one pill that did work for a while, I just hope it kicks back in and soon! I am starting to feel weak from the lack of food in my body, but I can’t help that. How frustrating. Oh well, I think the weekend was well worth the pain.

This week I go in for a pelvic ultrasound. I am really hoping that they discover what is going on with me and my pain. I don’t want them to find nothing and say it’s just Lupus- deal with it. That is so frustrating and heartbreaking. I’ll keep you posted.

2008-10-13T11:10:00.001-07:00

not a lot happening this weekend, but I do want you to know that the Lupus walk is this weekend and we would LOOOOOVE for as many people to show up as possible. If you can't make the walk, would you consider donating to our cause?

go to www.firstgiving.com/lewistollefson to join our team or to donate to such an amazing cause!!!

Exhaustion

2008-10-09T13:47:00.000-07:00

Have you ever just felt like you were on the verge of collapsing? I feel like that a lot, and I wish I could just give in to the feeling. Today is one of those days. I have been changing my medication. I saw my Rheumy in mid September and was relieve when she took me off the one medication. I was told to give it two weeks and see how I do. I completely forgot all about it, to be honest, I hate taking it, so I was glad to be rid of it. Well without realizing it I came upon the two week window and I became very ill. Everything I ate didn’t stay in my stomach and I hurt, oh how I hurt. Then I realized it- two weeks was up, the medication was fully out of my system. So as my doctor had told me, I started it back up. So here I sit today, medicate and just trying to get through the day. I am holding in there, but sometimes life is just hard.

So now I am struggling with deciding if the side effects are worth the cure. With the one medication I was just told that they found out that 70% of the users learned that their body quit losing weight. That is definitely me, I was wondering why I was gaining and not losing anything. I am good at being able to eat and not gain a ton of weight, so the weight gain was a huge shock to me. So can I deal with going off of it and have the pain, extreme pain that is unmanageable or do I continue to get fat. Why can’t they make medication that doesn’t cause weight gain. Or how about have a pill that has a side effect of weight loss. Ahh I can dream can’t I.

Join us for the Lupus walk next Saturday the 18th, we would love to have TONS of people show up!!

2008-09-16T12:45:00.001-07:00

So the struggles continue. I got my blood test results back and I had hoped that my sed rate would go down on the one med, but it hasn't.

Things have just been crappy. I am really starting to feel emotionally drained with all the meds and the side effects. Plus the feelings. the pain. I have a sinus thing going on and I can't take anything for it. this totally sucks. I know I should be blessed to have Lupus, so I can share with others my story, but sometimes I just want to scream. people just don't get it. How do we get the word out about this disease? how do we make people see?

The Breast Cancer three day was this weekend and I a looked at the news story and was jealous that Lupus doesn't get the amount of publicity as other diseases. it's just as bad, but there is no cure. I am so frustrated. I want so much for people to understand me. To not make a bid deal of it.

Thanks for lettingme vent... sometimes it's just good to get it off my chest.

2008-09-11T10:08:00.001-07:00

So I had a doctors apt this morning. We went over my pulmonary function test. The good news is the Lupus hasn’t set into my lungs. It does look like I have some asthma so I am getting an inhaler for when I need it…. Yippee. We are going to try and drop the Lupus meds to see if it makes a difference. I won’t know for two weeks if it will matter if I take it or not. I’m kinda glad I don’t have to take it. It’s hard to remember cause I have to take it on an empty stomach. Plus it is so stinking expensive.

The meds for the fibromyalgia are working, but there is one side effect that is terrible. Weight. Apparently 70% of those who take this med cannot lose weight and to make matters worse I have gained 9 pounds in 3 weeks. I am devastated. If this stupid med wasn’t working so well I would go off of it. I am the heaviest I have ever been, it’s so depressing. So what do I do? Keep getting fat and be 90% better than I was a year ago or go off the meds, lose 100 pounds and be in pain and MISERABLE? So frustrating, and losing weight has never been easy for me, so 100 pounds would take a long time. Decisions, decisions.

Nothin new

2008-09-04T08:42:00.000-07:00

same old, same old stuff. I feel like crap. Will this ever end? probably not. I'm in the middle of a pretty good flare. My body just aches and aches, the pain is so intense and even the max paid medication isn't taking the sting completely away. Sometimes the flares can be really discouraging and maybe it's my lack of sleep today, maybe not. anyways, I'm keeping up with life, and I hope to have more time to update you soon.

2008-08-19T11:51:00.001-07:00

So the GF diet tanked. There is no way in the world I could do this. Breakfast for me is my most important meal…. And I can’t find anything tasty. Oh well. I have decided that I am going to stop trying to fix all these pains and flares and just learned to live with them. I know I can. Lupus and Fibro is just going to have to live in my body while I fight it off and live with it.

This last weekend I over did it, and I knew it. But you know what- I would do it all over again. It was totally worth it. So now I look for ways to make this happen. I struggle with listening to my body. I struggle with not over doing it. I struggle with thinking so many things are worth it, when they are not.

Day Three, Four & Five.

2008-08-11T11:16:00.001-07:00

Well day three sort of worked out. Oh who in the WORLD am I kidding. I had pizza for lunch and a graham cracker later that evening. I seriously cannon do this. Saturday & Sunday I managed to get it done. On Saturday I even went to a couple of specialty stores and bought gluten free stuff- but have you TASTED it? I think I may starve to death. I have tried and there is NO way I am going to be able to do this. What was I thinking? I must have been crazy. Oh well, I tried. I decided I was going to “cut back” on the gluten intake. So I will still use brown rice, and rice flour, but I need my bread and my morning cereal. Sorry folks, it aint gonna happen in this lifetime!

Day Two

2008-08-07T12:49:00.000-07:00

Ok, so it's day two of my "Diet". I have to say I have already failed one...I had a hamburger last night with bread. I have decided after looking at the list I will probably succeed 90% of the time. Quite a few things I can turn in to Gluten free meals, but there is that occassional want for some bread or need for a quick meal.

Today at lunch I did succeed, I chocked down a corn tortilla on my taco (I am a big fan of flour), but I did it. I should weigh myself and see if I get any results. If I can learn to do this, maybe I can discipline myself to do other diets and loose some weight.

Last night was an interesting one.... We had our softball playoffs. I refuse to let Lupus put me 100% down. I quit bowling and I told my doctor there was NO WAY she was taking softball from me. She was surprised, but I am willing to suffer because of my love for the game. Anyways, we played two games in the heat, I have never done that. God really provided for me. As of last week on 10 ladies were suppose to come, that meant I would be on the field for the ENTIRE two games- something I knew I couldn't do. Well God added an 11th lady to the mix and we were assigned to trade places- it is DEFINATLY a God thing.

Two games was hard on me, at one point I stood behind the plate willing my body to stand up straight. It was probably one of the most physically demanding things I had done. I am paying for it today, but it was totally worth the high of winning those two games.

Day One

2008-08-06T11:56:00.000-07:00

Well today I saw my doctor. We are going to do a test on my lungs to see what is going on. That will happen in a week or so. The real thing she told me to do is take gluten and wheat out of my diet…. I KNOW! My jaw dropped too. She said that she rarely suggest a natural solution but this seems to work for some of her patients and at this point we need to try whatever we can to get my lupus & fibro to calm down.
So day one begins. Today is bagel Wednesday, I was going to have a bagel for lunch… but that is a no go. After looking at the list of what I can and can’t eat I realize this may NEVER work for me. How do people do it? I am going to really try, but I know there will be setbacks. I am a picky eater as it is, so to add no gluten to that, you might as well give me an IV for nourishment. So stay tuned. Hopefully I won’t get too cranky.

Lupus Walk

2008-07-28T08:08:00.001-07:00

The Annual Mad Hatter Lupus Walk is October 18th. I have set up my fundraising page and I am hoping to raise a ton of funds & get a BIG group of friends & family together for this walk.

You can click here to view my page and you can either support me or create your own fundraising page as part of my team.

I want to win largest team & most fund raising, not a bad goal to have. So sign up today, mark it on your calendars & let's have a great day! This is a kid friendly event!!!

Her words are powerful to me....

2008-07-23T08:57:00.000-07:00

I copied this from But you don't look sick. It's a great site and every day I get a small article. this one hit me hard becuase I touched on this subject in my last post.

The Pain of Disease and the Triumph of Togetherness
* Looking back on 5 years of ButYouDontLookSick.com

There’s a pain that can be worse than any physical disease.

It’s the loneliness you feel when you see your friends go out and do things without a second thought and how that is an impossible dream for you. How the simple act of attending class or going out to supper becomes a mountain you just cannot scale, because of the varying weights that disease dangles along with it. It is so difficult when you are all alone and those you love are where you want to be and they don’t even understand the magnitude of how much you would love to have that normalcy to be there. I would love to be able to not deal with a single consequence and only reap the rewards of fulfilling that task with them, but I can't always do that.

It’s the pain of being different—and no one understanding the magnitude of that difference and how every aspect of your life is touched with the tentacles of your ailment. You can’t make a simple yes/no decision on the spot because you have to think about its impact on your body and your future and how that impacts those you love. Nothing is easy and everything becomes important.

It’s having to think through the response to the question, “How are you?” Who knew that was such a deep question, but to those of us with chronic illness, we all know the struggle involved to give a truthful, but upbeat answer. You crave for others to understand that you love and appreciate your life, but that does not make a single breath of it easy or mean that you’re “doing fine.”

It’s the guilt that can accompany it all. Am I holding my family back? Am I putting too much work on my husband? Will my children understand how much I love them even when I cannot run or jump, or even just walk with them? Can my parents truly know how grateful I am for their protective care during the years before, during, and post-diagnosis, each day waking up trying to learn to be the best person I could be with this illness (and not always succeeding)? Can my siblings forgive the extra allowances I was given in retrospect? Can I forgive myself for not being able to do it all?

Like many of you, I’ve lived a life like this. I’m 28 years old and have been chronically ill for two thirds of those years now. So it’s not like we don’t have coping mechanisms that help tackle these pains. I have a faith that has been blessed by the inward turmoil that goes along with the pain (physical and emotional) and I have an appreciation for the important things that come with being able to live the simple life. Yes, being able to, not being stuck with it. But that doesn’t mean that there aren’t those moments. Those moments that you just would like someone to understand.

And here enters “ButYouDon’tLookSick.com.” I’m an innately shy person. Having lived a life of near hermit-dom for many years along the way, I suppose a lot of introspective tendencies have come my way. But when I read the Spoon Theory, like you readers, I was touched in a way that you other spoonies can relate. Someone out there gets it. In fact, not only one person, there’s a community who does. And perhaps I’m more of a lurker than a talker, but even I can appreciate the blessing of seeing (through articles, discussion boards, etc) that we are not alone. And for those of us who need to feel some compassion and understanding every once in awhile to get us through those rough moments, I want to say thank you for this site and the community that cares, that has evolved within its walls. Together we can make it through each day, and make it better than we could have alone.

Written by Carrie Beth Burns © 2008 butyoudontlooksick.com

Mid July update

2008-07-18T14:25:00.001-07:00

So much has gone only, physically, but especially emotionally. Let me explain.

Last week was our annual family camping trip. I have had a TON of anxiety regarding this trip because my medication is on a specific schedule and the mornings are already so bad, I was nervous about not being able to walk to the bathroom on my own. At home I have furniture in the right place for me to hold myself up to the bathroom. Mornings are so bad, so you can see where my reservations come in (not to mention late nights and a lot of physical work).

This year we opted to meal share with another family, and only God knew how much that would relieve from me and especially from David when it came to meals & such- don’t get me wrong we did help out but I was incredibly blessed that my friend had an RV so cooking and clean up was MUCH easier.

I kept pretty good track of my medication schedule, the mornings were BRUTAL and I know that two days I had maxed out on my pain medication and desperately needed more. On Wednesday a group of friends decided to do the ropes course, something I have ALWAYS wanted to do. Something I knew in my heart would tax my body so badly that I would pay for it…. I just didn’t realize how much. So in the heat of the day (Note: heat & my lupus are a terrible combination, so I already felt like crap), I put on the gear and I was the second to the last person to scale the 25 foot tree. I was incredibly proud that I made it that far but I was not meant to make it much further. There were some hiccups in the tree that gave us a 30 minute pause and then I moved across the wire, and again another 15-20 minute pause. By the time I climbed around to the other side my body said no more, and since I couldn’t make it back, my legs were jello and my mind was woozy they propelled me out of the tree and called 911. (for more exciting photos and stories stay tuned to my family site.)

So I paid BIG time for that one, I played softball that evening and came back to camp with a migraine. Again, no more pain pills for me so I climbed into bed and slept as best as I could.

The next morning was rough, David helped me walk ½ way to the bathroom, but I got to embraced and didn’t want others to see him needing to help me and I got the strength to go the rest of the way but I collapsed once I got inside. I don’t know why I am so scared to have others see how bad off I really am, maybe because I fear they won’t acknowledge it, or they won’t care.

So the rest of the week was restful and full of bruises and knowing when to ask for help. David is the most AMAZING husband. I just needed to give him a look or whisper in his ear and he was right there discreetly helping me do whatever I needed.

Right now the hardest thing is realizing that those that I thought were dear friends aren’t. Over the last few months I have seen one of two things, first, friends who I thought were true and there for me disappear, and friends who I had never really been close to show that they are true caring friends.

But at family camp a comment was made to me by someone who I thought was a dear friend; it’s possible I am reading into the comment, but it was so hurtful (and no I probably won’t address the situation because I don’t feel like I need to justify my disease). So here is the situation in a nut shell.

I fight HARD to not let my lupus or fibro show, I fight HARD not to let it bring me down. I plan and I plan and sometimes those plans change because my heart desires me to accomplish a task that I probably shouldn’t push myself to do- that’s the dare devil in me .
So when comments are made that it is unfair that I planned rest time or whatever so I can plan to do more than I should hurts and it hurts a lot. I wish for one day I didn’t feel like crap all the time. I wish for once I could go camping with my family and not stress about the fact that I am going to flare big time the next week. I wish people would just understand that when I have to plan rest time and then I change it because something else of greater desire come up that I can do that, I am willing to suffer the consequences.

Don’t send me to bed early because I want to enjoy others company instead of resting- I know In the back of my mind what I will pay for and I don’t need others pushing me away- that is of course unless I am being obnoxious- than go ahead (LOL).
I am so blessed to have those around me that understand. David was wonderful and the Russell’s offered me a warm place to sleep almost every night- I just didn’t want to leave my family alone in the cold and then get caught snoring to loudly .

So today is Friday and my flare is getting progressively worse as the week goes on. I have a feeling this will be an extremely relaxing weekend, I need it. I need to get through this flare as soon as I can.

I'm a slacker....

2008-06-25T13:32:00.001-07:00

I have purposely been putting off blogging here for so long. I guess it’s time for an update. May was a chaotic month. With my Uncle’s sickness and then with his funeral it was an emotionally straining month, especially since April seemed to have some backlash of its own on the friend side.

The past 6 months or so have been really hard for me. I have been struggling so much physically that I have wanted to crawl into a hole & just be left alone. I have strayed from some close friends since I don’t feel they really understand, which is my own stupidity for not sharing with them.

After all that stress, travel and just the overall schedule change on my body they last two months have been full of exhaustion and pain. Earlier this month (June) my doctor took me off the metho since it wasn’t effecting me. I am now on a new stronger drug. At first I was VERY excited, it instantly began to work. I went two weeks overcoming so many obstacles. I started to feel great! And then I go a cold. I had no idea how a simple cold would affect me. The first morning I woke up and decided to spend the day sleeping instead of work in hopes of fighting it off quickly. But by mid afternoon my ears hurt so bad I could hardly move, so I went to the doctor. I got an antibiotic and was sent off in hopes of it working.

Now this is another lesson learned: At the walk in clinic they didn’t know what my new medication was or what it did and frankly neither did I, nor did I care cause it was working. Luckily for me I am an apt at my rhuemy’s the next morning and learned that I needed to stop taking it or I would remain sick and the antibiotic would do nothing for me. So 10 days without the meds that wear working. Lucky for me it sped right by and now I am back on them. It is so great to feel so good. I still have small set backs and I am continually learning how not to push myself (even though I knowingly push myself too far).

I am still SO INCREDIBLY blessed by a husband who understands. One who loves me and cares. He is so great. He knows that when I get home from work, laying down for a good 10 minutes means the world to me and sometimes laying down for longer than that is what I need. He is also more protective of me, which is nice. I am only playing on one softball team this year…. Even though I am hopeful to be needed on the coed team as a fill in one night.

It is great to start feeling well. The true test of these meds will be this weekend. I get so sick when the temp heats up, so with any luck it won’t affect me nearly as bad!
Cross your fingers!!

Thursday

2008-04-17T13:56:00.001-07:00

Thursday’s are a HARD day for me. I think I have said it before, but for some reason today is especially bad. I feel like I need toothpicks to hold my eyes open. I know I do it to myself, but it is so worth it. The activities I get to be a part of on Wednesday’s are the most enjoyable thing in the world! I hope to never have to give it up. I just wish there was a way to get rid of the exhaustion side effect.

With all that being said I can’t help be still be elated over so many things that are going on in my life. God is so good! It is an interesting mix of emotions when you body feels as if it’s going to fall over and your mind is wanting to run wild with joy. I want to shout from the roof top how great our God is, how much He shows me His love and how grateful I am for the many, many blessings I have encountered the last couple of weeks.

In saying all that, I am reminded of something I was struggling with last night in my quiet time before AWANA. What do I pray for? Do I pray healing? Do I pray for strength? Do I pray to learn? Do I pray to be an example to other Lupies? Do I pray to be able to handle the many medications I am on? I guess I should be praying for all of that, but for some reason praying for healing seems so wrong, so that is why I thought of this problem. Not because I don’t want to be healed, because I can’t imagine what one day would feel like just being normal. I just know in my heart that God has something to show me through all of this…. He is an amazing God and I know I can only get through this because His strength is holding me through. So I sign off on my dreaded Thursday, enjoying the blue sky peaking through dark gray clouds (literally and figuratively speaking) and enjoy the warm sun on my face for just a moment.

I am thankful for all of you and the blessing He has shown me through you.
Happy Thursday!