Having Lupus doesn't mean my life has ended. It just means my life has completely changed; a lot.
I used to have a lot of endurance, patience and I handled "things" differently.
I remember when I first met with my disability attorney and she asked me how my life has changed since having lupus. She told me to make sure I write all of this down. Next thing I knew I almost had a novel going.
There's those "lovely" days when you flare so bad that you just don't have the energy to shower; let alone change your clothes. Thankfully my hair is long enough that I can toss it up into a loose bun because to try to do anything with my hair would cause utter fatigue that I wouldn't recover from.
That's another thing; my hair. Hair from holy thickness! Even though I loose gobs of it daily and I do mean gobs.....It looks like a cat fight has happened in my bathroom, I still have a head full of thick hair. I have to be thankful of that. I gave up blowing may hair dry for the most part. I can't even keep up with that because it takes too long and I don't have the strength or energy for that. After blowing it dry I'd have to straighten my hair. What you may not know about me is I have natural curly hair. We always want what we don't have; straight hair!
Most women love to take hot bubble baths when they have long hard days. Well....the last time I took a long hot bath I could barely get out of the tub. We have a garden tub and when you have lupus and RA, it is quite difficult getting out of a deep tub. I love those commercials for elderly people; the one's that advertise about the 4" step into the tub and just sit there and soak. That looks like heaven.
http://www.wayfair.com/Aston-Global-55x-30-Walk-In-Soaker-Bath-Tub-in-White-UZO1021.html?refid=GX8034128940-UZO1021&gclid=CKyguLLgs7ECFWkCQAodFFcAtQ
But, who can afford one of those? Only if my insurance company would pay for that! That's not going to happen. HA
Speaking of tubs, who can bend to shave their legs? Sorry, but on my bad days that would NOT be me. Luckily where I live our winter months are longer than summer so I don't have to worry so much about shaving or I could result to Nair and just plug my nose.
I used to love outdoor activities! I loved down hill skiing, cross country skiing, snow boarding, mountain biking, roller blade; I was very active. My hips are equal to my 93 year old Polish grandmother right now. Every morning when I roll over, to get out of bed, I moan and the fact that I'm in excruciating pain. Just being awake reminds me of having lupus and RA.
Lupus does cause chronic fatigue. Not because I have lupus, but because I have Macrocytic Anemia. This is from being deficient in B12. Vitamin deficiencies are common in lupus patients; vitamin D more so due to not being out in the sun so much. So, I'm constantly tired. I can't take iron supplements either because I have a colon issue which has become worse since lupus has decided to show it's ugly face there as well.
I have taken everything lupus has given to me and I first thought, "I can either use this as a crutch or I can do something about it". I'm not going to let lupus get me down. Do you want to know why? Because I can't control lupus! What I can control is how I respond to lupus! I can control how it controls my life and I won't let it take over me and my family. I will continue to fight the good fight to the end.
Trust me, I have my bad days more than I have my good days. But, all in all, I am who I am today because lupus has taught me so many things about humanity that I didn't know. I have learned more compassion, kindness, consideration and how to love more.
So, the above situations do occur, but I take them with a grain of salt and spit in the face of lupus. Because its my future that matters and the future of my family.
I still go outside to play with my kids. I just can't ski anymore. I certainly haven't been on a snowboard in years either. It's really a shame too. I love outdoor activities. Some days I have a hard time keeping up with my two little ones. But, that's to be expected.
I will continue to be an advocate and support my group that my dear friend I and created because that's what matters at the end of the day.
I used to have a lot of endurance, patience and I handled "things" differently.
I remember when I first met with my disability attorney and she asked me how my life has changed since having lupus. She told me to make sure I write all of this down. Next thing I knew I almost had a novel going.
There's those "lovely" days when you flare so bad that you just don't have the energy to shower; let alone change your clothes. Thankfully my hair is long enough that I can toss it up into a loose bun because to try to do anything with my hair would cause utter fatigue that I wouldn't recover from.
That's another thing; my hair. Hair from holy thickness! Even though I loose gobs of it daily and I do mean gobs.....It looks like a cat fight has happened in my bathroom, I still have a head full of thick hair. I have to be thankful of that. I gave up blowing may hair dry for the most part. I can't even keep up with that because it takes too long and I don't have the strength or energy for that. After blowing it dry I'd have to straighten my hair. What you may not know about me is I have natural curly hair. We always want what we don't have; straight hair!
Most women love to take hot bubble baths when they have long hard days. Well....the last time I took a long hot bath I could barely get out of the tub. We have a garden tub and when you have lupus and RA, it is quite difficult getting out of a deep tub. I love those commercials for elderly people; the one's that advertise about the 4" step into the tub and just sit there and soak. That looks like heaven.
http://www.wayfair.com/Aston-Global-55x-30-Walk-In-Soaker-Bath-Tub-in-White-UZO1021.html?refid=GX8034128940-UZO1021&gclid=CKyguLLgs7ECFWkCQAodFFcAtQ
But, who can afford one of those? Only if my insurance company would pay for that! That's not going to happen. HA
Speaking of tubs, who can bend to shave their legs? Sorry, but on my bad days that would NOT be me. Luckily where I live our winter months are longer than summer so I don't have to worry so much about shaving or I could result to Nair and just plug my nose.
I used to love outdoor activities! I loved down hill skiing, cross country skiing, snow boarding, mountain biking, roller blade; I was very active. My hips are equal to my 93 year old Polish grandmother right now. Every morning when I roll over, to get out of bed, I moan and the fact that I'm in excruciating pain. Just being awake reminds me of having lupus and RA.
Lupus does cause chronic fatigue. Not because I have lupus, but because I have Macrocytic Anemia. This is from being deficient in B12. Vitamin deficiencies are common in lupus patients; vitamin D more so due to not being out in the sun so much. So, I'm constantly tired. I can't take iron supplements either because I have a colon issue which has become worse since lupus has decided to show it's ugly face there as well.
I have taken everything lupus has given to me and I first thought, "I can either use this as a crutch or I can do something about it". I'm not going to let lupus get me down. Do you want to know why? Because I can't control lupus! What I can control is how I respond to lupus! I can control how it controls my life and I won't let it take over me and my family. I will continue to fight the good fight to the end.
Trust me, I have my bad days more than I have my good days. But, all in all, I am who I am today because lupus has taught me so many things about humanity that I didn't know. I have learned more compassion, kindness, consideration and how to love more.
So, the above situations do occur, but I take them with a grain of salt and spit in the face of lupus. Because its my future that matters and the future of my family.
I still go outside to play with my kids. I just can't ski anymore. I certainly haven't been on a snowboard in years either. It's really a shame too. I love outdoor activities. Some days I have a hard time keeping up with my two little ones. But, that's to be expected.
I will continue to be an advocate and support my group that my dear friend I and created because that's what matters at the end of the day.
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