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, October 18, 2011
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.
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?
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
September
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.
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:
http://www.lupus.org/webmodules/webarticlesnet/templates/pacificnw_news.aspx?articleid=4012&zoneid=257
This site changed their story, so you can now find my Why I walk Story HERE
http://www.lupus.org/webmodules/webarticlesnet/templates/pacificnw_news.aspx?articleid=4012&zoneid=257
This site changed their story, so you can now find my Why I walk Story HERE
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 WebMD.com defination).
So that above is how pluerisy is described, but let me tell you about it in my own words.
Your sitting at your desk, making dinner, driving or even laying down and all of a sudden my chest gets the stabbing pain. With every inhale I feel like my lungs are being stabbed. And with every exhale they feel the same. My entire body tightens up in hopes of enduring the pain. How long will this one last? Relief, when can I get some relief. If I hold my breath I get a little relief, jusst don't move my lungs. Then I take shallow breaths as long as my body can handle it in hopes of less movement. By now I am usually hugging a pillow or something close by and climbing into a ball in hopes of some relief but none comes. It can wake me in the dead of night. It is one pain I can't hold in. It takes all that is in me not to cry out and hope for relief soon.
You see, pleurisy can come and go whenever it wants.
By the time it goes my back hurts, my arms hurt and my head hurts from all that I have done to relieve the pain that really can't be relieved.
Right now I have had several attacks in the last 24 hours. Attacks that are bringing me to tears, attacks that even my strongest pain med doesn't even touch. Attacks that lingere in my arm and collar bone area until the next one. Attacks that just make today painful.
I wouldn't wish pleurisy on my worst nightmare. I wouldn't wish it on anyone. It is something terrible. But it's just another sign for me that I have Lupus. That I will never have a day without pain and that this will never go away. It's also a sign that meds are working and we need to look at "what's next". It's a sad sign. But one I am going to share with anyone who listens.
It's true Lupus sucks hard core. But we need to raise our voices and make it heard. So stand up and be heard. Find a walk in your area. Share this with someone who doesn't know what lupus is. Help us raise awareness.
In the meantime I'll be curled up trying to relieve this instense pain.
Pleurisy is swelling (inflammation) of the thin layers of tissue (pleura) covering the lungs and the chest wall.
The outer layer of the pleura lines the inside of the chest wall, and the inner layer covers the lungs. The tiny space between the two layers is called the pleural cavity. This cavity normally contains a small amount of lubricating fluid that allows the two layers to slide over each other when you breathe.
When the pleura becomes inflamed, the layers rub together, causing chest pain. This is known as pleuritic pain.
Pleurisy is sometimes called pleuritis.
(Above was taken from the WebMD.com defination).
So that above is how pluerisy is described, but let me tell you about it in my own words.
Your sitting at your desk, making dinner, driving or even laying down and all of a sudden my chest gets the stabbing pain. With every inhale I feel like my lungs are being stabbed. And with every exhale they feel the same. My entire body tightens up in hopes of enduring the pain. How long will this one last? Relief, when can I get some relief. If I hold my breath I get a little relief, jusst don't move my lungs. Then I take shallow breaths as long as my body can handle it in hopes of less movement. By now I am usually hugging a pillow or something close by and climbing into a ball in hopes of some relief but none comes. It can wake me in the dead of night. It is one pain I can't hold in. It takes all that is in me not to cry out and hope for relief soon.
You see, pleurisy can come and go whenever it wants.
By the time it goes my back hurts, my arms hurt and my head hurts from all that I have done to relieve the pain that really can't be relieved.
Right now I have had several attacks in the last 24 hours. Attacks that are bringing me to tears, attacks that even my strongest pain med doesn't even touch. Attacks that lingere in my arm and collar bone area until the next one. Attacks that just make today painful.
I wouldn't wish pleurisy on my worst nightmare. I wouldn't wish it on anyone. It is something terrible. But it's just another sign for me that I have Lupus. That I will never have a day without pain and that this will never go away. It's also a sign that meds are working and we need to look at "what's next". It's a sad sign. But one I am going to share with anyone who listens.
It's true Lupus sucks hard core. But we need to raise our voices and make it heard. So stand up and be heard. Find a walk in your area. Share this with someone who doesn't know what lupus is. Help us raise awareness.
In the meantime I'll be curled up trying to relieve this instense pain.
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