Friday, November 18, 2011


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!

Wednesday, October 26, 2011

3rd treatment done

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.

Tuesday, October 18, 2011

Benlysta and Other feelings

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.

Tuesday, September 20, 2011

Lupus is painful

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.

Tuesday, September 13, 2011

I'm Tired

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?

Wednesday, September 7, 2011

Walk Giveaway

Like last year I will be giving away a Disney gift basket that will include 2 one day park hopper passes to a Disney park*. Pictures will be posted next couple of weeks.
Or a lap quilt, made by me, in the fabric of your choice...

Here are the details oh how you can win:

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

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

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

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

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

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

Please contact me if you have any questions.

*(Park tickets will be available mid December)

Donate to my page by clicking here

Join our team here

Thursday, September 1, 2011


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.

Friday, August 12, 2011

Why I walk

If you don't have me on facebook or twitter than you haven't seen this link... Check it out:

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

Tuesday, August 9, 2011

What is pleurisy?

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 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.

Wednesday, August 3, 2011


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...

Tuesday, July 19, 2011


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.

Monday, July 11, 2011


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?

Wednesday, June 29, 2011

I've been avoiding you...

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.

Wednesday, June 22, 2011

Dear Family & Friends

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 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 ( Thank you so much for your support.

With best wishes,

So I went

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.

Monday, June 20, 2011

It's been a while

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.

Tuesday, May 24, 2011

where am I...

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.

Friday, May 20, 2011

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?

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.

Wednesday, May 4, 2011

Week 6

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).

Wednesday, April 27, 2011

By the way

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.

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


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.

Wednesday, April 20, 2011

11 years

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.

Sunday, April 17, 2011

Long week

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.

Sunday, April 10, 2011

Bad days

*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.

Friday, April 8, 2011

2nd infusion

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.

Friday, March 25, 2011

The infusion

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.

Wednesday, March 23, 2011

A ball of emotions

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.

Friday, March 18, 2011

Medication Update!

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!

Wednesday, March 16, 2011


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.

Thursday, March 10, 2011

It's been a long month

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!

Friday, February 4, 2011

A Week Later

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.

Friday, January 28, 2011

Losing the battle not the war

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.

Thursday, January 27, 2011

Another Doctor's Appointment

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.

Monday, January 24, 2011

My wish

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.

Wednesday, January 12, 2011

Ups & Downs

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.

Monday, January 10, 2011

feeling overwhelmed

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.

Friday, January 7, 2011

Social Media

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

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:

Wednesday, January 5, 2011


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.