- K
- N
In my last campaign I spoke for Whitney. This time, I will use her own words, paraphrased, because we all know how wordy she can be :)
Another night of no sleep, only a moderate amount of pain, a normal "Lupus Night" Then: 10:30 a.m. awakened to intense sharp burning pain from my hips to my toes; shoulders to my finger tips. A tormenting pinball machine of pain. I sit up, pull myself to my feet and start rocking back and forth, which sometimes helps a little. If I just don't rest all my weight on one leg at a time I can almost bear the pain. It's very strategic in fact. If I can hobble to the bathroom, it's kind of my barometer...how bad is the pain exactly? It's a 1-10 scale, but that scale sucks. All day long I play a game of 1-10. At a 4 I can handle, a 6 means a nap is definitely required, a 7 is cancel work,, and at 8 I make plans for the kiddos dinners and wonder if the ER is an option. It sound dramatic, right? Can you imagine re-rating yourself every time you did just that one thing too much for your body all of a sudden; every time God had a new plan? This is why Lupus sucks. 1-10, all day, every day.
This morning was an immediate 8. I shakily took my handful of immunosuppressants, antinausea pills, nerve meds, stool softeners, pain killers, steroids, anxiety meds and anti depressants. I knew going downstairs it was a very bad ankle day. Should I get my walker? I decided not to since I was headed for the couch. Too late. I tried to make coffee and ended up on the floor unable to get up. In tears, and feeling like my ankles were broken, helpless, and vulnerable all I could do was sit there and cry. My fiance could not even move me, and I didn't even want him to. The kids saw me like like that and that was an awful feeling. I'm ok with Eric seeing me: Snotty, overweight from prednisone, uncombed hair...but I hate hate hate my kids seeing me like that. All I can say to that is my amazing kids, all 6 of them make a darn good cup of coffee. They are amazing. I wound up on the floor twice that day. Already afraid there was no chance of work the next day.
That's lupus: here's is the honest to God real truth. This is what it looks like, and I never know if this is what my day will look like, or if I will have a day that is a 4 on the scale of 1-10 and I can go to work for 4 hours and try to pay some bills. Lupus Sucks. 2 Years ago I spent Christmas in the hospital visiting with my best friend who has MS. This year I am genuinely worried it will be me in the hospital.
I am looking into side careers where I could work from home...well bed...because I am terrified my body will not let me do hair for much longer.I applied for disablilty and for food stamps. I spend way too much time worrying about the basics in life, like paying the bills, the rent, groceries, gas in the car...things a 35 year old bride to be should have covered. I reduced my schedule at work to half-time, so at least I don't cancel as many clients, unless of course I can't get up from the floor. But it also means I make half the amount of money.
Thank you all for supporting me through this time and praying for me and donating to me, and hugging me, and doing all of the things you've been doing all year to let me know you love me. I've talked about things that make people uncomfortable, like pain killers, and snot, and weight gain, and God and none of you have judged me. Thanks for being there for me, I am such a fortunate woman. my life is amazing. Lupus may Suck, but my life is still amazing.
Hi, Kristina here...So now you have heard from Whitney herself. As I spend each day with her, what I can tell you is I have seen her on good days and bad. Throughout it all the one thing about Whitney is a continued amazing attitude and the strength of her family. Her kiddos rally around her. Eric has taken on chores, dinner, and the kids all pitch in when Whitney can't. I have never seen such an amazing spirit as I do in that household. I wish more than ever that they can continue to hold it together financially and not stress about their bills or worry about their rent. We are all hopeful the new medicine Whitney has been switched to will help finally. She has good doctors. They have good friends supporting them, and there is a lot of love around them all. Love does not pay the bills. You all have helped so much on the previous campagin.
Please help again. Because Lupus Sucks
Mahalo
Kristina
Another night of no sleep, only a moderate amount of pain, a normal "Lupus Night" Then: 10:30 a.m. awakened to intense sharp burning pain from my hips to my toes; shoulders to my finger tips. A tormenting pinball machine of pain. I sit up, pull myself to my feet and start rocking back and forth, which sometimes helps a little. If I just don't rest all my weight on one leg at a time I can almost bear the pain. It's very strategic in fact. If I can hobble to the bathroom, it's kind of my barometer...how bad is the pain exactly? It's a 1-10 scale, but that scale sucks. All day long I play a game of 1-10. At a 4 I can handle, a 6 means a nap is definitely required, a 7 is cancel work,, and at 8 I make plans for the kiddos dinners and wonder if the ER is an option. It sound dramatic, right? Can you imagine re-rating yourself every time you did just that one thing too much for your body all of a sudden; every time God had a new plan? This is why Lupus sucks. 1-10, all day, every day.
This morning was an immediate 8. I shakily took my handful of immunosuppressants, antinausea pills, nerve meds, stool softeners, pain killers, steroids, anxiety meds and anti depressants. I knew going downstairs it was a very bad ankle day. Should I get my walker? I decided not to since I was headed for the couch. Too late. I tried to make coffee and ended up on the floor unable to get up. In tears, and feeling like my ankles were broken, helpless, and vulnerable all I could do was sit there and cry. My fiance could not even move me, and I didn't even want him to. The kids saw me like like that and that was an awful feeling. I'm ok with Eric seeing me: Snotty, overweight from prednisone, uncombed hair...but I hate hate hate my kids seeing me like that. All I can say to that is my amazing kids, all 6 of them make a darn good cup of coffee. They are amazing. I wound up on the floor twice that day. Already afraid there was no chance of work the next day.
That's lupus: here's is the honest to God real truth. This is what it looks like, and I never know if this is what my day will look like, or if I will have a day that is a 4 on the scale of 1-10 and I can go to work for 4 hours and try to pay some bills. Lupus Sucks. 2 Years ago I spent Christmas in the hospital visiting with my best friend who has MS. This year I am genuinely worried it will be me in the hospital.
I am looking into side careers where I could work from home...well bed...because I am terrified my body will not let me do hair for much longer.I applied for disablilty and for food stamps. I spend way too much time worrying about the basics in life, like paying the bills, the rent, groceries, gas in the car...things a 35 year old bride to be should have covered. I reduced my schedule at work to half-time, so at least I don't cancel as many clients, unless of course I can't get up from the floor. But it also means I make half the amount of money.
Thank you all for supporting me through this time and praying for me and donating to me, and hugging me, and doing all of the things you've been doing all year to let me know you love me. I've talked about things that make people uncomfortable, like pain killers, and snot, and weight gain, and God and none of you have judged me. Thanks for being there for me, I am such a fortunate woman. my life is amazing. Lupus may Suck, but my life is still amazing.
Hi, Kristina here...So now you have heard from Whitney herself. As I spend each day with her, what I can tell you is I have seen her on good days and bad. Throughout it all the one thing about Whitney is a continued amazing attitude and the strength of her family. Her kiddos rally around her. Eric has taken on chores, dinner, and the kids all pitch in when Whitney can't. I have never seen such an amazing spirit as I do in that household. I wish more than ever that they can continue to hold it together financially and not stress about their bills or worry about their rent. We are all hopeful the new medicine Whitney has been switched to will help finally. She has good doctors. They have good friends supporting them, and there is a lot of love around them all. Love does not pay the bills. You all have helped so much on the previous campagin.
Please help again. Because Lupus Sucks
Mahalo
Kristina
Organizer and beneficiary
Whitney Phillips
Beneficiary