I've been meaning to update the blog to record some of the sides I'm beginning to experience, but I've just been too tired the last few days.
I still feel like it's not bad and is very doable, but I think I'm learning some valuable lessons about how far to push myself (or NOT) while on treatment. I need to learn to slow down for this year! I'm trying to become more attuned with my body and anticipate and listen to what it needs.
Case in point...months before I even knew I was to do this, I'd planned a Shrimp Boat field trip in Biloxi for our homeschool group. Well, I'd been feeling so well I thought I'd just follow through with the plans. We went yesterday and while it was absolutely wonderful and fun was had by all, it totally and completely put me on my back once I was back at home a few hours later.
It was around a 3 hour drive (there and back), and while the boat tour itself was relaxing and the sea air invigorating, I probably shouldn't have tramped to the beach carrying lots of gear afterwards. That was what did me in, I think. I could hardly keep my eyes open on the drive home, and once back home I simply collasped on the sofa. I literally felt like my skin weighed about 5,000 lbs or something and every ounce of energy was drained out of me. It's really odd to experience fatigue to this degree.
I continue to feel waves of nausea, but they pass within minutes. I got the idea from someone on the boat tour today to try the motion sickness bracelets. Since I'm only having the nausea slightly, I don't want to use the phenegrin...that stuff makes me soooo sleepy and woozy.
The other side I've started experiencing is joint pain. I only have this, so far, in my left thumb joint and sometimes in my hips...the thumb is the ouchiest as it's getting to the point where I can't use that hand effectively, can't open jars, or doors, etc. Luckily, my right hand is fine and I am right-handed!
I have developed a rash at the injection site - odd that it's only popped up now - four days after the injection! It's like a flat, red rash with a darker reddish center (where the needle went in), slighly itchy and about the diameter of a baseball.
I've tried sleeping w/o the Ambien but it just doesn't seem like a possibility. The 2 ribavirin doses have to be 12 hours apart so the 2nd one is at bedtime. One of the reactions from the Riba is that my blood feels sort of electric and all buzzy, so sleep is impossible w/o the help. Warm baths, sleeptime tea, soothing music have all been tried, and while I do enjoy all those, they can't seem to override the riba effect. The Ambien is wonderful, helps me sleep fast, but wake up normally, not all hangover-y feeling like the OTC stuff does.
On another positive note, my friend Jeanie sent me a lovely 'healing and inner strength' bracelet that I plan to wear everyday. It's made of amythest and flourite and has chinese symbols on wooden beads, too. She also sent a little spa package of tropical smelling lotions and potions which I'll most definitely have to share with Emma :) Jeanie is such a thoughtful and compassionate person and I just love her!!
It's heartwarming to see my friends (especially Alison and El and Jeanie) being so supportive of me through this...plus Kevin and Emma and my mom and Kevin's family, not to mention all the wonderful new compadres I've met on the UK forum....okay now I'm going to cry!! :)
Yep, and that's another side I've started noticing...I'm very emotional and find myself tearing up easily and often over the past couple of days. I even cried watching Dancing With The Stars last night, once because the dancing was beautiful, once just observing the emotions of the contestants...really! Oh and on American Idol when Jordin sang her first song...OMG, I was really boo-hooing - her voice and the song was so breathtakingly beautiful it made my very soul ache!
Tomorrow will be time for my 2nd interferon injection.
I still feel like it's not bad and is very doable, but I think I'm learning some valuable lessons about how far to push myself (or NOT) while on treatment. I need to learn to slow down for this year! I'm trying to become more attuned with my body and anticipate and listen to what it needs.
Case in point...months before I even knew I was to do this, I'd planned a Shrimp Boat field trip in Biloxi for our homeschool group. Well, I'd been feeling so well I thought I'd just follow through with the plans. We went yesterday and while it was absolutely wonderful and fun was had by all, it totally and completely put me on my back once I was back at home a few hours later.
It was around a 3 hour drive (there and back), and while the boat tour itself was relaxing and the sea air invigorating, I probably shouldn't have tramped to the beach carrying lots of gear afterwards. That was what did me in, I think. I could hardly keep my eyes open on the drive home, and once back home I simply collasped on the sofa. I literally felt like my skin weighed about 5,000 lbs or something and every ounce of energy was drained out of me. It's really odd to experience fatigue to this degree.
I continue to feel waves of nausea, but they pass within minutes. I got the idea from someone on the boat tour today to try the motion sickness bracelets. Since I'm only having the nausea slightly, I don't want to use the phenegrin...that stuff makes me soooo sleepy and woozy.
The other side I've started experiencing is joint pain. I only have this, so far, in my left thumb joint and sometimes in my hips...the thumb is the ouchiest as it's getting to the point where I can't use that hand effectively, can't open jars, or doors, etc. Luckily, my right hand is fine and I am right-handed!
I have developed a rash at the injection site - odd that it's only popped up now - four days after the injection! It's like a flat, red rash with a darker reddish center (where the needle went in), slighly itchy and about the diameter of a baseball.
I've tried sleeping w/o the Ambien but it just doesn't seem like a possibility. The 2 ribavirin doses have to be 12 hours apart so the 2nd one is at bedtime. One of the reactions from the Riba is that my blood feels sort of electric and all buzzy, so sleep is impossible w/o the help. Warm baths, sleeptime tea, soothing music have all been tried, and while I do enjoy all those, they can't seem to override the riba effect. The Ambien is wonderful, helps me sleep fast, but wake up normally, not all hangover-y feeling like the OTC stuff does.
On another positive note, my friend Jeanie sent me a lovely 'healing and inner strength' bracelet that I plan to wear everyday. It's made of amythest and flourite and has chinese symbols on wooden beads, too. She also sent a little spa package of tropical smelling lotions and potions which I'll most definitely have to share with Emma :) Jeanie is such a thoughtful and compassionate person and I just love her!!
It's heartwarming to see my friends (especially Alison and El and Jeanie) being so supportive of me through this...plus Kevin and Emma and my mom and Kevin's family, not to mention all the wonderful new compadres I've met on the UK forum....okay now I'm going to cry!! :)
Yep, and that's another side I've started noticing...I'm very emotional and find myself tearing up easily and often over the past couple of days. I even cried watching Dancing With The Stars last night, once because the dancing was beautiful, once just observing the emotions of the contestants...really! Oh and on American Idol when Jordin sang her first song...OMG, I was really boo-hooing - her voice and the song was so breathtakingly beautiful it made my very soul ache!
Tomorrow will be time for my 2nd interferon injection.
9 comments:
Hi, I'm glad to hear that you're managing well so far. I will be joining you tomorrow:-)
No wonder you are tired, you are over doing it a bit!
You don't need to worry about the riba being exactly 12 hours apart, very few do manage that. You could try ginger for the nausea if it gets bad, often works, and the injection site reaction is likely to lessen as time goes by.
Thanks, Terry! Good luck tomorrow! Let the battle BEGIN! I'll be keeping you in my thoughts & prayers! It's REALLY not as bad as I was anticipating so far :) hugs, D
Carol - Yep, what the heck WAS I think? LOL. thanks for the reminder abt the ginger! Duh - I'd forgotten about that. And also thks for the reassurances abt the timing of the riba dosing!! xoxo, d
Hey sweetie,
I am so glad to hear how you are doing, I have been thinking SO much of you and how you have been. I know how hard it must be to try and slow down, you are such a go getter. It sounds like you ain't going to have much choice with your body fighting that dragon! You be good to yourself and I am glad that you are managing OK so far, thank goodness for Ambien and the other miracles of medicine to help you thru this.
I will try and call you real soon!
Love,
El
I hear you, been through most of what you describe, minus the school field trips! The emotions going up and down, the rash at the injection sites (fortunately mine didn't itch), I've been told that joint pain is a good sign that you're going to clear this! I did my ribas when I got up - usually couldn't sleep past 5 or 6:AM, then promptly at 4:PM, as I couldn't handle the 12 hour apart creepy-crawly thing at night either, and it made taking them at 4 with ice cream made it easier to fall asleep.
But, now I need a 12-step program to kick the ice cream addiction!
Hi El - I'm looking forward to talking w/you soon...thx for ur support, honey! xoxox, d
Uncertain - Thx for the tip re ice cream and taking ribas earlier...ice cream sounds like a way better idea for taking the ribas - I can do That. Made me think of mary poppins and her spoonful of sugar...Thx, too, for putting a smile on my face this morning - that's the best medicine of all!
Hi denise, you have a buddy in ARM 1. I was disappointed for a brief moment but I got over it quickly. Away we go.........
Hi sis..I hope you're doing well since your 2nd injection..Try not to overexhert yourself..I know it's hard with the nice warm sun shining down and the beach beckoning...BTW, we are enjoying seeing the pics..Just wanted you to know that we are thinking of you and saying a prayer every day. Harris Teeter sells a ginger drop that helps with the nausea.Do you have one there?
Hey sweetie - we don't have a harris teeter down here but kevin is going to check at whole foods across the lake. I found some 'real' ginger ale at a little health food store here, and it works but is still too heavy on my stomach. I think the lozenges would work better. love you, d
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