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...
Wednesday, August 3, 2011
Tuesday, July 19, 2011
Walk
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.
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
Sacrifices
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?
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.
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 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
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
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.
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.
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.
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