*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.
Sunday, April 10, 2011
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.
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.
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.
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!
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
Update
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.
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!
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!
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