I really wish I would use this blog for an outlet more often, but I haven't. Maybe some day I will remember that I can post this stuff and free it from my brain. So here is the update...
I had my infusion in July with no signs of improvement. I went through summer fighting my lupus, watching everything that I did and taking every step with caution.
I met with my doctor in August and she said that because it took 3-4 infusions for it to start working I should wait until I have been back on it for the full four infusions... this was an overwhelming thought since I was a week away from number 2. She did show me my chart and the amazing progress I had made while on benlysta and to just hang in there. So I did.
September is usually a pretty stressful month for me, I have WAY too much going on in my life, and this year with the Benlysta not yet working in hit me hard. I struggled all month with painful days after painful days. Getting home to medicate myself couldn't come fast enough. I remember a recent Sunday when I was at church and I had three friends tell me I looked amazing and I must be feeling good, what I didn't share with them was no, this was an act and apparently I was acting too good so I needed to tone it down so no one would ask if I was really doing ok.
September may have been the worst Lupus symptoms I have had in a LONG time. But on last week I got the fourth infusion... I wasn't too optimistic that it would start working but as of yesterday I can say without a doubt that it has kicked in. I NEVER want to end the infusions, I NEVER want to go back to feeling the way I did. I am so thankful that it is actually working.
Don't get me wrong, I am going to take it easy the next few weeks just to make sure.
On another note... I decided at the begining of September to go gluten free for two reasons. One, a few years ago my Rhuemy asked me to just to see if it would work. I didn't have the motivation then or the willingness to try new things and two, I can't loose weight for anything. The first week I had a bad headache but for the most part it's been pretty easy. It's been 6 weeks and I am told it can take 6-8 weeks to see a difference, I know it will be hard to tell since benlysta was started back up but I will just wait and see.
I will keep you posted!
Thursday, October 11, 2012
Thursday, July 5, 2012
July 2012
A brief background for you before I get into the real motivation for this post.
I have been off benlysta. April 29th I learned I had bronchitis. That afternoon I had symptoms of a kidney infection. Sure enough I had one. My doc thought the antibiotics would talk care of the infection, but two weeks later I still had it, but no symptoms. She told me she is not too concerned but to follow up with my primary. Since my schedule was so hectic I put it on the back burner. She didn't sound too concerned so I wasn't either. Then as I went in for my next infusion I got a call saying that because I had this infection I couldn't get it. Great.
So I saw another doc, got another antibiotic and this last Tuesday saw my PCP and was all cleared. I partly wonder if he cleared me because I was having some serious issues with my ankles and he was confident it was Lupus... and at those words, I burst into tears. I had finally seen the benefits of benlysta without a doubt in the world.
The last few weeks have been a consistant reminder of the role Lupus plays in my life. My pain level was high, every inch of me ached. Anytime someone touched me for a hug or something I seared pain through my body. Chest pains at night that would wake me, exhaustion so strong that getting home from work was the only desire of the day so I could go to bed. And guilt. Guilt that I couldn't be a part of my family. Guilt of not wanting to take my son to his class, guilt of letting him play video games the moment we walked in the door. Guilt that my husband had to make and clean up dinner. Guilt that staying awake after my ten year old went to bed so I could spend time with my husband was just too unbearable. And guilt that pain medication was the only thing I desired to make it all numb.
Guilt...
A feeling I haven't really felt this strongly in several months.
Guilt...
A feeling I was choosing to feel. But couldn't make a different choice for myself.
It's my fault. I put off the appointment. I was lead to believe it wasn't a big deal so I just didn't care. I have learned that lesson a very important lesson.
But in all this guilt, yesterday may have been the biggest smack in the face for me. I couldn't keep up with others around me. I struggled with being in the sunshine. I struggled with standing for long periods of time and finally I had to distance myself from the fun and go inside to watch from the window. I try desperately to disappear without being noticed, because I don't want a big deal made. I don't want the fun to stop just cause I can't be there. I ended up dozing on the couch to catch up on those elusive spoons I have been searching for the last month.
But it was the first time in months I really felt like I had pushed myself way too far. I sat on the couch looking out the window realizing that benlysta really did make a big impact on my life. It really gave me more time with my son, more time with my husband and more time with my friends enjoying life.
Today I was studying Ruth for a weekly bible study I am in, and there is apart where the author talks about her friends pain:
"I can cope with the pain for the most part, but the despair of feeling forgotten by God's healing is overwhelming".
To me, I don't feel forgotten by God, I feel that God has chosen this path for me and to me that is more overwhelming than to think He forgot me. I know He didn't. But I do consistently wonder why I was chosen this path, and these challenges. But a paragraph later she writes "God love endures forever" and when I read that my mind is at ease. Oh I still wonder why this is my cross to bear, but I know that God still in control, even through my pain, feelings of defeat He is there. And in my lowest point He is holding me.
Thankfully my rheumy can get me in tomorrow for my infusion. I am ready for it. And if the side effects return I am ready. My body is reacting well to this medication and I thank the Lord for this gift he has given me.
I have been off benlysta. April 29th I learned I had bronchitis. That afternoon I had symptoms of a kidney infection. Sure enough I had one. My doc thought the antibiotics would talk care of the infection, but two weeks later I still had it, but no symptoms. She told me she is not too concerned but to follow up with my primary. Since my schedule was so hectic I put it on the back burner. She didn't sound too concerned so I wasn't either. Then as I went in for my next infusion I got a call saying that because I had this infection I couldn't get it. Great.
So I saw another doc, got another antibiotic and this last Tuesday saw my PCP and was all cleared. I partly wonder if he cleared me because I was having some serious issues with my ankles and he was confident it was Lupus... and at those words, I burst into tears. I had finally seen the benefits of benlysta without a doubt in the world.
The last few weeks have been a consistant reminder of the role Lupus plays in my life. My pain level was high, every inch of me ached. Anytime someone touched me for a hug or something I seared pain through my body. Chest pains at night that would wake me, exhaustion so strong that getting home from work was the only desire of the day so I could go to bed. And guilt. Guilt that I couldn't be a part of my family. Guilt of not wanting to take my son to his class, guilt of letting him play video games the moment we walked in the door. Guilt that my husband had to make and clean up dinner. Guilt that staying awake after my ten year old went to bed so I could spend time with my husband was just too unbearable. And guilt that pain medication was the only thing I desired to make it all numb.
Guilt...
A feeling I haven't really felt this strongly in several months.
Guilt...
A feeling I was choosing to feel. But couldn't make a different choice for myself.
It's my fault. I put off the appointment. I was lead to believe it wasn't a big deal so I just didn't care. I have learned that lesson a very important lesson.
But in all this guilt, yesterday may have been the biggest smack in the face for me. I couldn't keep up with others around me. I struggled with being in the sunshine. I struggled with standing for long periods of time and finally I had to distance myself from the fun and go inside to watch from the window. I try desperately to disappear without being noticed, because I don't want a big deal made. I don't want the fun to stop just cause I can't be there. I ended up dozing on the couch to catch up on those elusive spoons I have been searching for the last month.
But it was the first time in months I really felt like I had pushed myself way too far. I sat on the couch looking out the window realizing that benlysta really did make a big impact on my life. It really gave me more time with my son, more time with my husband and more time with my friends enjoying life.
Today I was studying Ruth for a weekly bible study I am in, and there is apart where the author talks about her friends pain:
"I can cope with the pain for the most part, but the despair of feeling forgotten by God's healing is overwhelming".
To me, I don't feel forgotten by God, I feel that God has chosen this path for me and to me that is more overwhelming than to think He forgot me. I know He didn't. But I do consistently wonder why I was chosen this path, and these challenges. But a paragraph later she writes "God love endures forever" and when I read that my mind is at ease. Oh I still wonder why this is my cross to bear, but I know that God still in control, even through my pain, feelings of defeat He is there. And in my lowest point He is holding me.
Thankfully my rheumy can get me in tomorrow for my infusion. I am ready for it. And if the side effects return I am ready. My body is reacting well to this medication and I thank the Lord for this gift he has given me.
Friday, June 22, 2012
Like last year I will be giving away a Disney gift basket that will include 2 one day park hopper passes to a Disney park*. Pictures will be posted next couple of weeks.
Or a lap quilt, made by me, in the fabric of your choice...
Here are the details oh how you can win:
1. 1 raffle entry for every $10.00 you donate.
2. An additional raffle ticket each time you post it on your Facebook/Twitter page (Please tag me so I can keep track)
3. An Additional raffle ticket if someone donates because of your link
4. THREE more tickets if you join our team (Seattle walk or Virtual walk)
5. An additional ticket for each of your friends that join the team
6. Raise $100 and I'll toss in another ticket.
Please contact me if you have any questions.
*(Park tickets will be available mid December)
Donate to my page by clicking HERE
Join our team HERE
Thursday, May 10, 2012
What World Lupus day & Lupus Awareness Month mean to me
A few weeks ago I shared my story to women who have known me for years. I thought the fact that I had Lupus wouldn't suprise them since I don't hide it. But, it surprised many. I was disappointed in myself for not sharing more about Lupus with others and the more I thought about it the more I realized that I was, but the platform I was using wasn't for everyone and I don't walk around with a billboard announcing it. Instead I use social media.
I realize I'm quiet on facebook about it. I use twitter to vent about lupus, and even then I block people who know me in real life. I keep a blog, but would prefer not to know if people I know read it. Why? Because I like to vent. And because I don't want to be defined by this disease. You maybe saying to yourself "but I would never do that", but you do, you just don't know it.
Today is World Lupus Day. A day to raise awareness. A day to educate someone who may or may not have had an opportunity in the past to learn what Lupus means.
Don't feel sorry for me, that maybe the worse thing you can say. I am not sorry. This is my story, this is a part of me. And today I choose to stand up to Lupus and tell it to back off. Today I choose to raise awareness because the more people that know the better chances of a cure being found in my lifetime! So today I URGE you to share something about Lupus somewhere, somehow. Put it on your facebook status, encourage your friends to particapate in "Put On Purple" next week DO SOMETHING! No more Dr. House jokes, let's get rid of this once and so no one else has to deal with this!
Wednesday, April 18, 2012
Put on Purple for Lupus
On May 18th the Lupus Foundation of America is hosting a "Put on Purple for Lupus" event. The goal is to get people to wear purple to raise awareness for Lupus.
I am going to have a contest... So here are the rules:
Wear purple on the 18th and post a photo on Facebook or Twitter (Tag me! I have to see it!)
Get others to do this (Have them tag both you & me so I can keep track of who did it because of your efforts)
Get a Celebrity to wear purple and get 5 extra entries (Local celebrities count too!!)
Get your company to sponsor this event and get 3 extra entries.
If you need more information, posters or something to get the ball rolling with your comany you can email me or comment below and I will help you out. (Email: lewisdca at msn.com)
The prize is a $100 PF Changs Gift Card. So dig out that purple and join in!!
PS- Here is the Facebook event: https://www.facebook.com/#!/events/205471922889558/ or comment below and let me know you will join us!
Frustration
I have been playing with this post in my head for a few weeks now. But this weekend really set off my frustrations.
I had made plans for the weekend, no more than a "normal" person could handle. My 9th Benlysta infusion was on Friday (a week late). I left wrok early and went home to take a nap so I was ready for what was ahead of me. That is really when my frustration hit the roof.
By Sunday I was so exhausted and in so much pain I could barely deal with it. I want to be able to live my life. I want to be able to make plans and follow through. I want to not have to worry about flaring any more.
Sunday I started a flare. My first one in months and this maybe the most discouraging one. What can I say. I haven't had one and I was proud of that. I got through Sunday doing all that was on my list (yep, pushed myself). And then Monday morning came and I WENT TO THE GYM.... what is the world was I thinking. When did I get into this I can do it all no matter what mentality?
And the real surprise... I over did it at the gym. I hurt so bad I can hardly walk (even two days later). Sitting down or standing up is the worse! I've heard the comments of "no pain, no gain", "go back to the gym and work those muscles again it will help", "if your sore stretch".
These comments drive me INSANE. My body isn't a normal body. My body doesn't heal like others. Pain is a bad thing.
Why do I do this to myself?
Why do I think that any drug will make me "normal"?
Why do I expect Benlysta to make is all go away?
The flare has died down, no rash on my face (my neck & back are not so lucky). The chest pains are lessing. But I don't know if that is because my focus is on the fact that the squats I was doing with 25# killed my legs.
Time for me to stop expecting that I will feel better. Time for me to go back to listening to my body and accepting what is dealt to me.
I had made plans for the weekend, no more than a "normal" person could handle. My 9th Benlysta infusion was on Friday (a week late). I left wrok early and went home to take a nap so I was ready for what was ahead of me. That is really when my frustration hit the roof.
By Sunday I was so exhausted and in so much pain I could barely deal with it. I want to be able to live my life. I want to be able to make plans and follow through. I want to not have to worry about flaring any more.
Sunday I started a flare. My first one in months and this maybe the most discouraging one. What can I say. I haven't had one and I was proud of that. I got through Sunday doing all that was on my list (yep, pushed myself). And then Monday morning came and I WENT TO THE GYM.... what is the world was I thinking. When did I get into this I can do it all no matter what mentality?
And the real surprise... I over did it at the gym. I hurt so bad I can hardly walk (even two days later). Sitting down or standing up is the worse! I've heard the comments of "no pain, no gain", "go back to the gym and work those muscles again it will help", "if your sore stretch".
These comments drive me INSANE. My body isn't a normal body. My body doesn't heal like others. Pain is a bad thing.
Why do I do this to myself?
Why do I think that any drug will make me "normal"?
Why do I expect Benlysta to make is all go away?
The flare has died down, no rash on my face (my neck & back are not so lucky). The chest pains are lessing. But I don't know if that is because my focus is on the fact that the squats I was doing with 25# killed my legs.
Time for me to stop expecting that I will feel better. Time for me to go back to listening to my body and accepting what is dealt to me.
Tuesday, March 27, 2012
Update
Not much new to update on my end. Wait, I take that back. I have been putting off posting for so long I haven't give you the latest update... so here goes.
Last month I learned that my Iron levels were seriously low. So much that they were considering stopping the benlysta if I couldn't get them back up. I am taking Iron supplements a few times a week. They make me itch like crazy so I don't like to take them.
Friday I go in for a procedure that will hopefully stop my mentral cycle so my iron levels don't drop. I hope that works because stopping the Benlysta is not something I want to do.
In other news, I was watching one of the new talk shows last week with my husband and it was on ADD/ADHD and my husband kept trying to convince me that I have it. So now I am contemplating testing for that. The only thing stopping me is the idea of another medication. But the promise of feeling organized and being able to finally finish something would be amazing. I'll keep you updated on that!
Last month I learned that my Iron levels were seriously low. So much that they were considering stopping the benlysta if I couldn't get them back up. I am taking Iron supplements a few times a week. They make me itch like crazy so I don't like to take them.
Friday I go in for a procedure that will hopefully stop my mentral cycle so my iron levels don't drop. I hope that works because stopping the Benlysta is not something I want to do.
In other news, I was watching one of the new talk shows last week with my husband and it was on ADD/ADHD and my husband kept trying to convince me that I have it. So now I am contemplating testing for that. The only thing stopping me is the idea of another medication. But the promise of feeling organized and being able to finally finish something would be amazing. I'll keep you updated on that!
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