When you're feeling lousy, it can be hard to do something like get up and ask for - or even look for- help. I have been there. But I want you to know things can get better.
They don't usually get better all by themselves, though. It does take some work.
And I know it can seem hopeless, and endless at times.
But it really can get a whole lot better. It has for me. I was so sick I had a stroke and kidney failure, congestive heart failure, anemia, the whole 9 yards. I am now married, got my hair back, kept my kidneys (they are functioning normally), got full function of my hand back, and I'm happy.
I work out, teach guitar, wrote a book, I travel, I perform comedy-music shows, I go out and have fun with friends. I can even get an "A" on dance dance revolution. In fact, sometimes I'm doing so well, my lab tests turn up completely normal.
You would never know I had lupus if I weren't sitting here typing about it.
I say all that not to brag, but to let you know there is hope.
But none of us get better all on our own. We all need help, including and especially emotional support.
Not everyone is fortunate enough to have a lupus support group in their town. But there are some other resources.
There are lots of great chat rooms on the web, some of them specific to lupus. I like this one (though I haven't been on it for a while):
http://forum.wehavelupus.com/forum.php
And this one seems quite active:
http://chronicbabeclub.ning.com/
This one has an active lupus section, but also sections for all kinds of other illnesses, and over 94,000 members:
http://www.healingwell.com/lupus/
Of course, meeting face to face is even better, if you're feeling up to leaving the house.
Start with the Lupus Foundation of America (LFA):
http://tinyurl.com/45gzkvq
If there aren't any chapters of the lupus foundation in your area, there may be some meetup groups. Go here and enter your zip code (Some groups cost a few dollars per meetup; some don't): http://meetup.com/
Sometimes there is a support group at your local hospital. Open up your options by attending groups for any autoimmune disease.
Additionally, when you're surfing around on the internet late at night lonely, bored, or in pain, there are a number of lupus blogs out there you can read (including mine) by bloggers who post about their journey. You can read, leave comments, or - if feeling ambitious- start your own blog to vent feelings and ask readers to interact.
This is the lupus foundation's blog, but if you look along the right column, there is a list of links to a bunch of blogs written by lupus patients.
http://lfa-inc.blogspot.com/
This is my blog:
http://lupusandhumor.blogspot.com/
Carla
~~~~~~~~~~~
Carla Ulbrich, The Singing Patient, is the author of "How Can You *Not* Laugh at a Time Like This? Reclaim Your Health with Humor, Creativity and Grit"
http://www.thesingingpatient.com
http://tinyurl.com/4j8qfc4
They don't usually get better all by themselves, though. It does take some work.
And I know it can seem hopeless, and endless at times.
But it really can get a whole lot better. It has for me. I was so sick I had a stroke and kidney failure, congestive heart failure, anemia, the whole 9 yards. I am now married, got my hair back, kept my kidneys (they are functioning normally), got full function of my hand back, and I'm happy.
I work out, teach guitar, wrote a book, I travel, I perform comedy-music shows, I go out and have fun with friends. I can even get an "A" on dance dance revolution. In fact, sometimes I'm doing so well, my lab tests turn up completely normal.
You would never know I had lupus if I weren't sitting here typing about it.
I say all that not to brag, but to let you know there is hope.
But none of us get better all on our own. We all need help, including and especially emotional support.
Not everyone is fortunate enough to have a lupus support group in their town. But there are some other resources.
There are lots of great chat rooms on the web, some of them specific to lupus. I like this one (though I haven't been on it for a while):
http://forum.wehavelupus.com/forum.php
And this one seems quite active:
http://chronicbabeclub.ning.com/
This one has an active lupus section, but also sections for all kinds of other illnesses, and over 94,000 members:
http://www.healingwell.com/lupus/
Of course, meeting face to face is even better, if you're feeling up to leaving the house.
Start with the Lupus Foundation of America (LFA):
http://tinyurl.com/45gzkvq
If there aren't any chapters of the lupus foundation in your area, there may be some meetup groups. Go here and enter your zip code (Some groups cost a few dollars per meetup; some don't): http://meetup.com/
Sometimes there is a support group at your local hospital. Open up your options by attending groups for any autoimmune disease.
Additionally, when you're surfing around on the internet late at night lonely, bored, or in pain, there are a number of lupus blogs out there you can read (including mine) by bloggers who post about their journey. You can read, leave comments, or - if feeling ambitious- start your own blog to vent feelings and ask readers to interact.
This is the lupus foundation's blog, but if you look along the right column, there is a list of links to a bunch of blogs written by lupus patients.
http://lfa-inc.blogspot.com/
This is my blog:
http://lupusandhumor.blogspot.com/
Carla
~~~~~~~~~~~
Carla Ulbrich, The Singing Patient, is the author of "How Can You *Not* Laugh at a Time Like This? Reclaim Your Health with Humor, Creativity and Grit"
http://www.thesingingpatient.com
http://tinyurl.com/4j8qfc4
3 comments:
Support can be SO important! Awesome and helpful post, Ms. Carla, thank you for sharing! Best to you!
Cheers,
Headstrong
Just found your blog and loving it. I have a question. This posts mentions that your hair is grew back. Mine is not falling, but I don't think its growing. Out of all my research, I cannot find what about lupus makes the hair fall out. Would you happen to know the reason?
hi!
thanks for reading, and chiming in.
there are 2 reasons those of us with lupus lose our hair: prednisone side effects and the disease itself.
mine grows back after i use the prednisone to stop the flare then get off the prednisone (slowly!).
lupus affects skin as well as the lining of organs and cartalidge; i'm guessing that the skin effects of lupus also affect the hair. It could also be malnutrition due to lupus affecting the digestive system.
But, like you, I have not found precise answers as to the exact workings of why lupus affects hair.
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