What is this?
Well, it is 4:30am. I am awake. Still had another whole hour to go before the alarm went off and I had to start moving my joints around before getting up and getting the kids ready for school. I woke up on my own. Layed in bed for a few minutes. Smelled coffee....set to brew at 3am so that man I live with can have some before going to work. Decided to get up and get a cup of courage.
Yesterday was my first Benlysta infusion. Spent the day with my mom. We went water walking in the morning while the kiddos where at school. Then we went to lunch at Winking Lizard. Had a chichen sandwich and fries with mayo. It was ok...not the best I have ever tasted but not the worst!! After that, she insisted on driving me to my first infusion. She was concerned about how I was going to react to the medication. The IV went OK. went through the vein at first....pulled the needle back a bit and whamo....there it was. Have a little bruise but nothing bad. My veins are crap!! What few veins I do have are so badly scarred from all the blood draws over a lifetime of health conditions.
I was hoping the results would be immediate. No such luck. My oldest son had a baseball game last night. I looked absolutely rediculous sitting in the sun under an umbrella....but my legs were out in the sun a bit and here comes the rash!! Legs covered in a pretty red rash! Doesnt help that my lower legs are purplish from the venous damage....I told my 5 year old I am turning into a rainbow! Purplish lower legs, red sun rash, black and blue mark on my arm....hmmmm...where is the orange and yellow?? Oh, way off track!! My son won his game!! Good job!! He needs some help at bat!! I felt bad for him. I see his team mates....average size for their age...then there is my son....13 years old, 6'3" and 230 pounds.....YIKES, he is huge!! And still growing!!
That male person that lives in my house came home from work yesterday and said that he wanted to appologize for his behavior. I told him I am done talking about it because this is the cycle. He gets drunk, says words that hurt me, I cry, next day he appologizes and expects me to say everything is ok. I have had enough of it. Told him I do not accept his appology this time because he never learns and I am tired of it! He asked if he could go to the baseball game with us. I told him that he will always be our kids' father...but as for being my husband, that is questionable!! He asked for his ring back....told him no!! Don't deserve it!!
I am going on a trip with my sister in law today. We are going to a ghost conference in mid-Ohio. Won't be back til Sunday some time. My oldest son is going with a friend to Kalahari in Sandusky, Ohio for the weekend and my two younger kids are staying with my parents. Told that man that lives with me that this weekend will give him a glimpse into life without us!! And, since he damaged his cell phone beyond repair in a fit of drunken rage, he can't even call any of us!!
Today is my birthday. Big 41!! Think I would wake to a card or even a hand written note from that man that lives with me? Nope...nothing. It's not unusual, though! Just another one of his selfish features!! Its my fault though. I have spoiled him. I don't want presents or candy or flowers. Never have. He knows that. I have been with him since I was 21. Half of my life!! Even though I don't want presents, how about putting some of your beer money away and taking me out to dinner? NOthing fancy!! Just the though would be enough!! Oh well!!
All these thoughts going through my brain this morning....what do I need to pack? I have to run to the store to pick up my meds and some road snacks. Have to make sure the house is tip top before I leave so he doesn't throw a fit while we are gone! Sister in law is picking me up at noon. Oldest son on the bus at 6:30, papa picking little man up at 7:30, daughter on the bus at 8:30. All these thoughts going through my mind, then it hits me....what is this? Holy crap, I am moving much better this morning!! Still a bit stiff, but nothing like it usually is!! Typing away, barely any pain in my fingers!! Was it the water walking or the infusion?? Can it really work this fast?? Been on methotrexate for over a year and I never felt this way!! Is this real or just my brain wishing it so? Whatever it is, I will take it!! Even if just for one day!!! I was gona wait til next week for the first infusion. Wasnt sure how my body would react to it and didn't want to have a reaction while on my trip. I am so glad they talked me into having it yesterday!! Maybe I will feel well enough on this mini-trip that I won't look like a total retard each time I go to stand up and walk. Maybe I won't fall in front of my sister in law. Maybe she won't have to hear me ouching in the mornings!! Maybe!! Fingers crossed!!
Have a great weekend y'all!!!
Yesterday was my first Benlysta infusion. Spent the day with my mom. We went water walking in the morning while the kiddos where at school. Then we went to lunch at Winking Lizard. Had a chichen sandwich and fries with mayo. It was ok...not the best I have ever tasted but not the worst!! After that, she insisted on driving me to my first infusion. She was concerned about how I was going to react to the medication. The IV went OK. went through the vein at first....pulled the needle back a bit and whamo....there it was. Have a little bruise but nothing bad. My veins are crap!! What few veins I do have are so badly scarred from all the blood draws over a lifetime of health conditions.
I was hoping the results would be immediate. No such luck. My oldest son had a baseball game last night. I looked absolutely rediculous sitting in the sun under an umbrella....but my legs were out in the sun a bit and here comes the rash!! Legs covered in a pretty red rash! Doesnt help that my lower legs are purplish from the venous damage....I told my 5 year old I am turning into a rainbow! Purplish lower legs, red sun rash, black and blue mark on my arm....hmmmm...where is the orange and yellow?? Oh, way off track!! My son won his game!! Good job!! He needs some help at bat!! I felt bad for him. I see his team mates....average size for their age...then there is my son....13 years old, 6'3" and 230 pounds.....YIKES, he is huge!! And still growing!!
That male person that lives in my house came home from work yesterday and said that he wanted to appologize for his behavior. I told him I am done talking about it because this is the cycle. He gets drunk, says words that hurt me, I cry, next day he appologizes and expects me to say everything is ok. I have had enough of it. Told him I do not accept his appology this time because he never learns and I am tired of it! He asked if he could go to the baseball game with us. I told him that he will always be our kids' father...but as for being my husband, that is questionable!! He asked for his ring back....told him no!! Don't deserve it!!
I am going on a trip with my sister in law today. We are going to a ghost conference in mid-Ohio. Won't be back til Sunday some time. My oldest son is going with a friend to Kalahari in Sandusky, Ohio for the weekend and my two younger kids are staying with my parents. Told that man that lives with me that this weekend will give him a glimpse into life without us!! And, since he damaged his cell phone beyond repair in a fit of drunken rage, he can't even call any of us!!
Today is my birthday. Big 41!! Think I would wake to a card or even a hand written note from that man that lives with me? Nope...nothing. It's not unusual, though! Just another one of his selfish features!! Its my fault though. I have spoiled him. I don't want presents or candy or flowers. Never have. He knows that. I have been with him since I was 21. Half of my life!! Even though I don't want presents, how about putting some of your beer money away and taking me out to dinner? NOthing fancy!! Just the though would be enough!! Oh well!!
All these thoughts going through my brain this morning....what do I need to pack? I have to run to the store to pick up my meds and some road snacks. Have to make sure the house is tip top before I leave so he doesn't throw a fit while we are gone! Sister in law is picking me up at noon. Oldest son on the bus at 6:30, papa picking little man up at 7:30, daughter on the bus at 8:30. All these thoughts going through my mind, then it hits me....what is this? Holy crap, I am moving much better this morning!! Still a bit stiff, but nothing like it usually is!! Typing away, barely any pain in my fingers!! Was it the water walking or the infusion?? Can it really work this fast?? Been on methotrexate for over a year and I never felt this way!! Is this real or just my brain wishing it so? Whatever it is, I will take it!! Even if just for one day!!! I was gona wait til next week for the first infusion. Wasnt sure how my body would react to it and didn't want to have a reaction while on my trip. I am so glad they talked me into having it yesterday!! Maybe I will feel well enough on this mini-trip that I won't look like a total retard each time I go to stand up and walk. Maybe I won't fall in front of my sister in law. Maybe she won't have to hear me ouching in the mornings!! Maybe!! Fingers crossed!!
Have a great weekend y'all!!!
Replies
sending you so much love that no matter what happens how it happens when it happens......you will know that you have a friend listening and caring......encouraging and cheering you on..........hoping that the benlysta infusions will begin to bring about a change for your health angel.........i don\'t know a whole lot about it, i think they give you so many fairly quickly and then begin a monthly dosage after that, but not so sure? praying for you, hugs, and lots of TLC........xoxoxoxoox