I can't believe I've not written in three years! So much has gone on, yet it seems like I just got started here! Still I want to write about my life with Lupus, but my illnesses have progressed as have my medications. I am no longer on Benlysta infusions. They lasted about a year with no real significant results to show. I tried Orencia infusions, no help was found. Now, since my Lupus is progressing, but my RA is progressing much faster, my Rheumy decided to try to treat my RA with Rituxan infusions to at least try to slow down the progression of the RA and to save my joints a bit longer. We will see how that goes later on.
Other things in my life have changed as well. My son got married, and I'm going to be a grandma in the next month! I'm very excited so I pray I'm around a lot longer to watch him grow up. My daughter graduated nursing school last month and I'm super proud of her. She is planning on moving to Kansas soon to be closer to her boyfriend. So, she'll be gone, my hubby and I moved down to GA. I miss my parents...they are elderly and I've never lived far from them before but I do talk to Mom nearly every day. I also miss my sister and niece, and my few true friends. The good news is there are many, many more doctors down here and hopefully they can help me more. AND even better news is that I'll only be an hour from my new grandson!!
Hopefully I won't take too long to write again...
###
Monday, August 31, 2015
Thursday, March 15, 2012
First Infusion -- The Days that Follow
Hi again.
Looks like I've made it through another day/night. Yesterday got to be pretty rough for a while. Muscle aches, joints hurt and are swollen, low-grade fever, cough, headache, constant thirst, and a bad taste that lingered in my mouth. A few peers in my Benlysta Buddies Facebook group assured me that they, too, had that weird metallic taste. Most said it would go away in a few days. (Good!)
I'm still weak and sleepy so I will probably keep this one short. One thing that still bothers me more than the above mentioned 'issues' is the fact that my neuropaathy is flared again. UHG! Hands and feet are very hot, red and burning. This stinks because it is so hard to get them comfortable. But... if that is the worst thing I have to go through to fight this ugly Lupus, then I'll take it all.
The thing is that most of what I'm experiencing after my first infusion (so far) are things that I experience usually everyday. One difference is the weird taste in my mouth. Another is that under MY norm, my peripheral neuropathy is more under control. That is something I need to get used to - at least for now. Perhaps it will pass.
Ok, I'm going to rest for a while. I'm getting sleepy again. Thanks for reading. I'll update again very soon.
Til next time,
K.
Looks like I've made it through another day/night. Yesterday got to be pretty rough for a while. Muscle aches, joints hurt and are swollen, low-grade fever, cough, headache, constant thirst, and a bad taste that lingered in my mouth. A few peers in my Benlysta Buddies Facebook group assured me that they, too, had that weird metallic taste. Most said it would go away in a few days. (Good!)
I'm still weak and sleepy so I will probably keep this one short. One thing that still bothers me more than the above mentioned 'issues' is the fact that my neuropaathy is flared again. UHG! Hands and feet are very hot, red and burning. This stinks because it is so hard to get them comfortable. But... if that is the worst thing I have to go through to fight this ugly Lupus, then I'll take it all.
The thing is that most of what I'm experiencing after my first infusion (so far) are things that I experience usually everyday. One difference is the weird taste in my mouth. Another is that under MY norm, my peripheral neuropathy is more under control. That is something I need to get used to - at least for now. Perhaps it will pass.
Ok, I'm going to rest for a while. I'm getting sleepy again. Thanks for reading. I'll update again very soon.
Til next time,
K.
Wednesday, March 14, 2012
Benlysta - First Infusion
Yesterday was my first infusion of Benlysta. I wanted to try to document my journey with this ground-breaking new medication for Lupus. If you aren't familiar with it, it is first Medication approved for Lupus in over 50 years! If successful (meaning I have no major issues with side effects), my quality of life may be improved significantly within a few months!!! I'm very excited at this prospect!
When I arrived at the my rheumatologists office, I checked in and was taken back to a room specifically for injections, infusions, and the like. I wasn't nervious because of my excitement! I am a member of a couple of support groups on Facebook that have offered tremendous advice and encouragement. Benlysta Buddies and Mothers with Lupus are filled with caring, compassionate people and these folks made my first infusion an easy one.
The nurse that administers the infusion, Amy, had asked me to have taken two Benedryl tablets in addition to two Tylenol before coming to the office. This was to help with any potential allergic reaction and the risk of a minimal pain from the IV. I waited patiently as Amy prepared my dosage in the IV bag. I felt very little discomfort as she stuck my arm (I am blessed to have a large vein in my left arm!). Several vials of blood was drawn through a port in the tubing before the infusion of Benlysta began.
Amy said I should let her know if I felt anything odd. After about 10 minutes, my heart seemed to be fluttering so Amy slowed the drip down somewhat. That helped my heart. Then a few minutes after that, I had a weird metalic taste in my mouth and seemingly on my tongue. She again slowed the drip and the rest of my infusion went without incident. I survived my first infusion!!
My dear sister-in-law, Alyce, was kind enough to take me and even was allowed to sit in the room with me. After she took me home, I was very sleepy and tired. (Benedryl maybe?) I slept for several hours, got up to eat a sandwich and drink some water. At that time, I began to feel as if I had loose junk in my chest. Coughing helped and I was able to go back to sleep. A couple of hours later I woke up again. My peripheral neuropathy was flared and it was very irritating. I took my prescribed dosage of Neurontin (given to me by my neurologist) and the burning eased off in less than an hour.
I later went back to bed and slep about 6 more hours. I had to use the restroom or I would probably be asleep still. I wanted to write this before I laid back down to rest. I'm still exhausted and have a tinge of a headache, but nothing rest shouldn't take care of.
Thanks for reading. I hope this will help someone else on their Benlysta journey. I'll try to write as often as I am able.
Have a wonderful day!!!
Karen
When I arrived at the my rheumatologists office, I checked in and was taken back to a room specifically for injections, infusions, and the like. I wasn't nervious because of my excitement! I am a member of a couple of support groups on Facebook that have offered tremendous advice and encouragement. Benlysta Buddies and Mothers with Lupus are filled with caring, compassionate people and these folks made my first infusion an easy one.
The nurse that administers the infusion, Amy, had asked me to have taken two Benedryl tablets in addition to two Tylenol before coming to the office. This was to help with any potential allergic reaction and the risk of a minimal pain from the IV. I waited patiently as Amy prepared my dosage in the IV bag. I felt very little discomfort as she stuck my arm (I am blessed to have a large vein in my left arm!). Several vials of blood was drawn through a port in the tubing before the infusion of Benlysta began.
Amy said I should let her know if I felt anything odd. After about 10 minutes, my heart seemed to be fluttering so Amy slowed the drip down somewhat. That helped my heart. Then a few minutes after that, I had a weird metalic taste in my mouth and seemingly on my tongue. She again slowed the drip and the rest of my infusion went without incident. I survived my first infusion!!
My dear sister-in-law, Alyce, was kind enough to take me and even was allowed to sit in the room with me. After she took me home, I was very sleepy and tired. (Benedryl maybe?) I slept for several hours, got up to eat a sandwich and drink some water. At that time, I began to feel as if I had loose junk in my chest. Coughing helped and I was able to go back to sleep. A couple of hours later I woke up again. My peripheral neuropathy was flared and it was very irritating. I took my prescribed dosage of Neurontin (given to me by my neurologist) and the burning eased off in less than an hour.
I later went back to bed and slep about 6 more hours. I had to use the restroom or I would probably be asleep still. I wanted to write this before I laid back down to rest. I'm still exhausted and have a tinge of a headache, but nothing rest shouldn't take care of.
Thanks for reading. I hope this will help someone else on their Benlysta journey. I'll try to write as often as I am able.
Have a wonderful day!!!
Karen
Sunday, February 19, 2012
Few Tears Today
I made it through most of the day without a tear. I didn't cry from pain today, but I cried while watching Whitney Houston's funeral service. Strange how I went back to my youth while I watched her music videos, listened to her beautiful voice and heard her friends/family tell stories of her life.
She made an impact on so many people. Did she ever know how many people she touched with her voice? I wish I could make that kind of impact on others. Maybe help someone else dealing with Fibromyalgia, Lupus or one of the many other illnesses I have. I hurt bad at times, but there are people far worse off than I am. I should be counting my blessings every hour.
I was able to visit with my parents today. They live very close to me, but I rarely go out of the house anymore...unless it's absolutely necessary. (Doctor appointments...etc.) I have no energy. But, the days I do have energy and DO get out or DO work hard here at home, I pay for it for several days. You'd think I'd learn to do things in moderation....BUT...that's just me.
A new friend posted on my wall today..."I have Lupus, but it doesn't have ME!" I need to make that my theme. Thanks for reading. It's 4:30 a.m. now....perhaps I should go to bed.
Til next time,
k.
She made an impact on so many people. Did she ever know how many people she touched with her voice? I wish I could make that kind of impact on others. Maybe help someone else dealing with Fibromyalgia, Lupus or one of the many other illnesses I have. I hurt bad at times, but there are people far worse off than I am. I should be counting my blessings every hour.
I was able to visit with my parents today. They live very close to me, but I rarely go out of the house anymore...unless it's absolutely necessary. (Doctor appointments...etc.) I have no energy. But, the days I do have energy and DO get out or DO work hard here at home, I pay for it for several days. You'd think I'd learn to do things in moderation....BUT...that's just me.
A new friend posted on my wall today..."I have Lupus, but it doesn't have ME!" I need to make that my theme. Thanks for reading. It's 4:30 a.m. now....perhaps I should go to bed.
Til next time,
k.
Friday, February 17, 2012
Venting a sec...
Ok, I need a venting session - So...last night was one of my worst pain nights EVER. In tears, wrapped up in my heated throw...you get it. Hubby wanted to take me to ER last night, but I tried to tough it out with my "strong" Tramadol meds. (phht!) Anyway, this morning I call my rheumatologist to see if he would call in some pain patches to help with joint and muscle pain. About a half hour ago, the nurse calls me back and said, "The doctor doesn't think opiates will be of any use to you." I said, "I didn't ask for opiates, just pain patches for the extremely bad places." The nurse says, "Well, those pain patches have opiate drugs in them and he doesn't feel they'd benefit you." I'm on the phone trying not to cry and ask, "what am I supposed to do for this?" Well, the nurse is goint to try to "speed up" my Benlysta stuff and TRY to get me in before my 6-week out appointment. You'd think my rheumy would understand this pain. My neurologist is the one that allowed Tramadol for me. GEEZ! Last time I went to the ER they treated me as if I were a druggie just looking for a 'high.' I don't understand this. Would they want to be in this pain? Would they allow their wife, sister or mother to suffer???? I am so upset, pain is starting again. What a vicious cycle!!!!!!!!!!!!!!!!
A Partial Butterfly
It's closing in on 4:30 a.m. I'm in tremendous pain and can't get comfortable enough to rest, let alone sleep. My Rheumatologist doesn't want me taking "pain pills" because Lupus will get worse (it is right now) and THEN, what will I do for pain??? I see his point, but I promise I am no drug addict. It took me three months to use 10, yes TEN, pain tablets he did prescribe me. This would be a night/morning that I would have needed a number 11. Bad is bad...it's intense and nothing I do will ease it off.
Lupus is ugly. It's mean and unforgiving.Over the last few weeks I've noticed how red and irritated my nose seems. I realized after reading more on Lupus that although I don't have full "butterfly" or malar rash on my cheeks and nose...some people just have it on the nose. I guess I'll look like Rudolph the Red-nosed Lupie from her on out. It's part of this illness. It's part of me now.
I've cried a lot today. I look at handfulls of hair that come out when I brush my hair and think, "well, it's only going to get worse from here on out." So I cry. I look at the tremendous amount of weight I've gained thanks in part to prednisone and plaquenil...and I cry. I look in the mirror and hate what I see... again, I cry. I'm not really crying "feeling sorry" for myself as much as I cry for the woman I once was. She's gone forever....
I cry more
and more
and more...................
Lupus is ugly. It's mean and unforgiving.Over the last few weeks I've noticed how red and irritated my nose seems. I realized after reading more on Lupus that although I don't have full "butterfly" or malar rash on my cheeks and nose...some people just have it on the nose. I guess I'll look like Rudolph the Red-nosed Lupie from her on out. It's part of this illness. It's part of me now.
I've cried a lot today. I look at handfulls of hair that come out when I brush my hair and think, "well, it's only going to get worse from here on out." So I cry. I look at the tremendous amount of weight I've gained thanks in part to prednisone and plaquenil...and I cry. I look in the mirror and hate what I see... again, I cry. I'm not really crying "feeling sorry" for myself as much as I cry for the woman I once was. She's gone forever....
I cry more
and more
and more...................
Thursday, February 16, 2012
Chronic Illnesses suck...seriously
Where to start tonight? Words come so easily at times and then there are times like this when they are all jumbled and make no sense. Thing is I have so many things I want to write about. I want to share my pain just in the off chance it could help someone and maybe someone else might understand me a bit better.
At some point I want to write "letters" to my husband, my kiddos, my parents, my siblings and to my friends. I want them to know how special they are to me. Let's face it....the way this disease (Lupus - SLE) is progressing, who knows how long I'll be here. So, that being said, I of course began to get sleepy.
I'll try to write more tomorrow. Can barely hold my head you.
Many blessings,
K.
At some point I want to write "letters" to my husband, my kiddos, my parents, my siblings and to my friends. I want them to know how special they are to me. Let's face it....the way this disease (Lupus - SLE) is progressing, who knows how long I'll be here. So, that being said, I of course began to get sleepy.
I'll try to write more tomorrow. Can barely hold my head you.
Many blessings,
K.
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