OK, so now that I have the camera-computer thing all figured out, it's time that I started to catch up on picture posting. Despite the fact that I have not been posting regularly does not mean that life has come to a standstill here. We have, as usual, been busy with friends and family, taking Hazel out and showing her the world.
For those wanting an update on my MS, there isn't really much to say. I started my daily Copaxone injections a couple of weeks ago. I really don't enjoy them at all, as they burn badly for about half an hour after the injection, and they leave these welts and bruises. I have to rotate injection sites, so I'm covered with the welts and have to keep track of where my last injection was so that I don't inject to close to it. It's kind of a pain. But the reason I chose this drug instead of one of the other three is because Copaxone has no side effects other than the injection site stuff. That allows me to maintain a fairly normal life, other than sneaking off to inject every night after Hazel goes to bed and watching the evening news with an ice pack. Oh, and the big ugly bright red sharps container that now lives on my counter with the big orange BIOHAZARD sticker on it. It does not go with the decor.
I will have to do these injections for the rest of my life, or until a better treatment comes along. The drugs don't make me "feel" any better, or affect my symptoms, or cure the MS. What they do is modify my immune system in order to extend remission time. Remission in MS is not "true" remission because demylenation is still occurring, and I still experience symptoms and exacerbations of those symptoms, brought on by stress, heat, lack of sleep, viral illness, and other triggers. Right now, I still have some mild pins-and-needles tingling in my fingers, occasional moments of vertigo, some mild memory loss and other minor cognitive dysfunction, weird electric shock feelings in my lower back, muscle spacticity in my legs and cramping in my calves and general malaise. By far the most prominent symptom is the fatigue. It's a killer, and I wander through the day fantasizing about when and where I can take my next nap. My muscles are tired, and my batteries are drained all the time. There is no other way to describe it.
So, you might see me walking down the street or through the grocery store, or you may see me running out to catch the mail carrier, and say, "Oh, Amanda is doing fine!" While I really do not want any pity, I also don't want this illness to be minimized, a common complaint among so many of the folks with MS that I have spoken to lately. Most people's image of MS is an outdated one, an image of young people severely and obviously disabled, an image that was developed prior to the advent of disease modifying drugs like Copaxone. While it is not the norm for someone with MS to be in a wheelchair any longer, there are silent symptoms, like the ones I have described, that allow for a fairly invisible disease but one that is very real for the person experiencing it. So, I'm not doing fine, I have multiple sclerosis. But I am dealing with it the best I can and today I'm doing that pretty well.
So on with the pictures! We took Hazel down to the harvest celebration at our farm and she had a blast, mostly because there were people there with guitars! Playing bluegrass!! Guitars and bluegrass are two of her favorite things ever, and the pictures of her watching the band play are priceless.
For those wanting an update on my MS, there isn't really much to say. I started my daily Copaxone injections a couple of weeks ago. I really don't enjoy them at all, as they burn badly for about half an hour after the injection, and they leave these welts and bruises. I have to rotate injection sites, so I'm covered with the welts and have to keep track of where my last injection was so that I don't inject to close to it. It's kind of a pain. But the reason I chose this drug instead of one of the other three is because Copaxone has no side effects other than the injection site stuff. That allows me to maintain a fairly normal life, other than sneaking off to inject every night after Hazel goes to bed and watching the evening news with an ice pack. Oh, and the big ugly bright red sharps container that now lives on my counter with the big orange BIOHAZARD sticker on it. It does not go with the decor.
I will have to do these injections for the rest of my life, or until a better treatment comes along. The drugs don't make me "feel" any better, or affect my symptoms, or cure the MS. What they do is modify my immune system in order to extend remission time. Remission in MS is not "true" remission because demylenation is still occurring, and I still experience symptoms and exacerbations of those symptoms, brought on by stress, heat, lack of sleep, viral illness, and other triggers. Right now, I still have some mild pins-and-needles tingling in my fingers, occasional moments of vertigo, some mild memory loss and other minor cognitive dysfunction, weird electric shock feelings in my lower back, muscle spacticity in my legs and cramping in my calves and general malaise. By far the most prominent symptom is the fatigue. It's a killer, and I wander through the day fantasizing about when and where I can take my next nap. My muscles are tired, and my batteries are drained all the time. There is no other way to describe it.
So, you might see me walking down the street or through the grocery store, or you may see me running out to catch the mail carrier, and say, "Oh, Amanda is doing fine!" While I really do not want any pity, I also don't want this illness to be minimized, a common complaint among so many of the folks with MS that I have spoken to lately. Most people's image of MS is an outdated one, an image of young people severely and obviously disabled, an image that was developed prior to the advent of disease modifying drugs like Copaxone. While it is not the norm for someone with MS to be in a wheelchair any longer, there are silent symptoms, like the ones I have described, that allow for a fairly invisible disease but one that is very real for the person experiencing it. So, I'm not doing fine, I have multiple sclerosis. But I am dealing with it the best I can and today I'm doing that pretty well.
So on with the pictures! We took Hazel down to the harvest celebration at our farm and she had a blast, mostly because there were people there with guitars! Playing bluegrass!! Guitars and bluegrass are two of her favorite things ever, and the pictures of her watching the band play are priceless.
A perfect frittata for breakfast, made with eggs, potatos, garlic and arugula, all from the farm.
Getting psyched!
One of our laying hens. The poor things were forced to get chased by kids all afternoon. I couldn't make a fritatta without them.
Hanging with mama, waiting for the band to play.
"Mama, you're not funny anymore."
The band starts to play...
...and Hazel starts to shake it.
"Are those...GUITARS??"
"...and BLUEGRASS???"
"This is the best day of my life!!!"
Entranced.
The happiest girl in the world.
3 comments:
First, can I come have breakfast? Yours looks so much better than mine.
Second, Hazel if you get any cuter you are going to break my computer.
Amanda, your strength never ceases to amaze me. I cannot even come close to imagine what it is like to be in your shoes. You are in my thoughts everyday. Thank you for once again for teaching me so many life lessons through your example.
By the way, Kenya is in love with the pictures of the Land Shark.
i love that you just referred to your own husband as "kenya". whatever name he is going by these days, kenya, billybob, matt, give him my love! but first take some for yourself, beautiful. xoxox
1. thanks for this eye-opener post.
2. love the sharkie porkie pie.
hugs to you all!!!
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