There are many things that I enjoy.
The sound of birds chirping. Beautiful. Kevin's amazing laugh. A slice of Danish cheese. Hugging my basset hound. A glass of full-bodied wine. Laughing at "The Golden Girls". The California breeze that warms my body. A low creatinine; preferably below 2. Listening to The Killers. Love from my friends. Sushi. New clothes. Chocolate milk. Shopping at Ross. Feeling thin. A good workout. The Soup Plantation. Dr. Dauer. California. Traveling. Mac and Cheese. And the sun that shines upon the California landscape...
There is much to be grateful for. And I am. I truly am.
About Me
- Henriette Ivanans
- Los Angeles, California
- I am 47 and thriving in Southern California. One day at a time.
Sunday, May 31, 2009
Craving the mundane
The last time I saw Dr. Dauer, I was very sick. I had conjunctivitis, a chest cold, and my nose was running a marathon. UGH. And so I got oral antibiotics that very nearly killed me. 25 days later my eyes were still crusting over and I was prescribed eye drops. Oh, but my immune system is weak. My creatinine was 2.9 (normal is a high of 1.4). It saddened me that Dr. Dauer was hoping for a result in the 3's. I am officially in stage 4 end stage renal failure. When I visit the clinic, I get epogin shots. They boost my hemoglobin-giving my red blood cells oxygen to give me energy.
I am oh, so tired-exhausted, really.
Recently, I watched the Farrah Fawcett special. It destroyed me. Her illness was so destructive and so very sad.
But what resonated most deeply was her repetitive phrase "I miss my life". She must have said that 5 times over and over. I miss my life, too. I miss acting, make-up, running and volunteering.
Am I resentful? Yes.
I crave the joys that others enjoy. Playing with their children, frolicking in shows, playing instruments, exercising and the mundane that I miss so much.
Yes, I regret my loss. And I often feel angry and pissed.
Am I jealous of those who thrive with good health? Yes. I loathe my exhaustion; the way in which I drag my body around.
Good health is a precious bestowal. That which many take for granted. It's a blessing to jump out of bed and take the day by storm.
Enjoy your gift. Because there are many who can't; and boy, do they wish they could...
I am oh, so tired-exhausted, really.
Recently, I watched the Farrah Fawcett special. It destroyed me. Her illness was so destructive and so very sad.
But what resonated most deeply was her repetitive phrase "I miss my life". She must have said that 5 times over and over. I miss my life, too. I miss acting, make-up, running and volunteering.
Am I resentful? Yes.
I crave the joys that others enjoy. Playing with their children, frolicking in shows, playing instruments, exercising and the mundane that I miss so much.
Yes, I regret my loss. And I often feel angry and pissed.
Am I jealous of those who thrive with good health? Yes. I loathe my exhaustion; the way in which I drag my body around.
Good health is a precious bestowal. That which many take for granted. It's a blessing to jump out of bed and take the day by storm.
Enjoy your gift. Because there are many who can't; and boy, do they wish they could...
Sunday, May 17, 2009
Be an organ donor in America...
IT'S AS EASY AS ONE, TWO, THREE (WELL, FOUR)...
Help Create a Donation Friendly America!
Each organ and tissue donor saves or improves the lives of as many as 50 people. Giving the "Gift of Life" may lighten the grief of the donor's own family. Many donor families say that knowing other lives have been saved helps them cope with their tragic loss.
Get Started!
1.) Register with your state donor registry.
Get more information on how to register to be a donor in your state. Most states, but not all, have donor registries.
HERE IS THE LINK: http://www.organdonor.gov/donor/registry.shtm
2.) Designate your decision on your driver’s license. Do this when you obtain or renew your license.
3.) Sign a donor card now. Carry the donor card with you until you can designate your donation decision on your driver’s license or join a donor registry.
-Download a page of eight donor cards to print and sign (PDF - 467 KB)
-Order a free donor card that will be mailed to you.
HERE IS THE LINK FOR THE CARDS: http://www.organdonor.gov/donor/index.htm
4.) Talk to your family now about your donation decision. Help your family understand your wish to be an organ and tissue donor before a crisis occurs. Then they will be prepared to serve as your advocate for donation.
This takes so little time, and will truly be the greatest gift you ever give someone. It's still the greatest gift I ever received, although my U2 IPOD was a close second...
Help Create a Donation Friendly America!
Each organ and tissue donor saves or improves the lives of as many as 50 people. Giving the "Gift of Life" may lighten the grief of the donor's own family. Many donor families say that knowing other lives have been saved helps them cope with their tragic loss.
Get Started!
1.) Register with your state donor registry.
Get more information on how to register to be a donor in your state. Most states, but not all, have donor registries.
HERE IS THE LINK: http://www.organdonor.gov/donor/registry.shtm
2.) Designate your decision on your driver’s license. Do this when you obtain or renew your license.
3.) Sign a donor card now. Carry the donor card with you until you can designate your donation decision on your driver’s license or join a donor registry.
-Download a page of eight donor cards to print and sign (PDF - 467 KB)
-Order a free donor card that will be mailed to you.
HERE IS THE LINK FOR THE CARDS: http://www.organdonor.gov/donor/index.htm
4.) Talk to your family now about your donation decision. Help your family understand your wish to be an organ and tissue donor before a crisis occurs. Then they will be prepared to serve as your advocate for donation.
This takes so little time, and will truly be the greatest gift you ever give someone. It's still the greatest gift I ever received, although my U2 IPOD was a close second...
Be an organ donor...in B.C. and Manitoba, Canada.
Better I let the pros do the talking on this one...
British Columbia:
To legally express your wishes regarding organ or tissue donor in British Columbia, please record your decision with the organ donor registry. Online registration is available through the British Columbia Transplant Society website, https://www.transplant.bc.ca/onlinereg/bcts.asp
For further information please call 1-800-663-6189.
Manitoba:
If you wish to donate organ(s) or tissue after death, complete the attached donor card and keep it with your Manitoba Health Registration Certificate (health card) so it is visible for law enforcement and hospital officials.
It is extremely important to discuss your decision with your family to ensure your wishes are fulfilled.
THIS IS THE LINK: http://www.gov.mb.ca/health/donor.html (for the printable card).
If you require further information regarding organ and tissue donation, please contact Transplant Manitoba at (204) 787-1897 or visit their website at www.transplantmanitoba.ca.
This is the greatest gift you will ever give someone. It's still the greatest gift I ever received, although my U2 IPOD was a close second...
British Columbia:
To legally express your wishes regarding organ or tissue donor in British Columbia, please record your decision with the organ donor registry. Online registration is available through the British Columbia Transplant Society website, https://www.transplant.bc.ca/onlinereg/bcts.asp
For further information please call 1-800-663-6189.
Manitoba:
If you wish to donate organ(s) or tissue after death, complete the attached donor card and keep it with your Manitoba Health Registration Certificate (health card) so it is visible for law enforcement and hospital officials.
It is extremely important to discuss your decision with your family to ensure your wishes are fulfilled.
THIS IS THE LINK: http://www.gov.mb.ca/health/donor.html (for the printable card).
If you require further information regarding organ and tissue donation, please contact Transplant Manitoba at (204) 787-1897 or visit their website at www.transplantmanitoba.ca.
This is the greatest gift you will ever give someone. It's still the greatest gift I ever received, although my U2 IPOD was a close second...
Be an organ donor...in Ontario, Canada.
In this case, I thought I'd let the pros do the talking...
TRILLIUM GIFT OF LIFE NETWORK
Here’s how to indicate your wishes to be an organ and tissue donor in Ontario:
Talk to your family
- Once you have decided to become a donor, the most important step is talking to your family about your wishes. Even if you have documented your wishes by registering as a donor with the Ministry of Health and Long-Term Care, it is important that your family knows about your decision. This is because hospital staff will talk with the next-of-kin of potential donors about what their loved one would have wanted. Out of respect for grieving families, the next-of-kin are asked to provide the final consent, even if there is a signed consent indicated on your health card.
Register your consent to save lives
- Have your consent linked to your health card in the Ministry of Health and Long-Term Care centralized data bank so that it is accessible 24/7. Registering your consent to donate means your family will have the comfort of knowing that they are supporting your wishes and will be relieved of the burden to make that decision on your behalf.
- The Gift of Life Consent Form 3750-84 is available through the Ministry's website at http://www.health.gov.on.ca/english/public/forms/form_menus/ohip_fm.html ; available at your local Service Ontario Health Card Services -OHIP Office or outreach site in Ontario; and through Trillium Gift of Life Network by calling 416-363-4001 or Toll-free 1-800-263-2833, and through our website at www.giftoflife.on.ca - or send an e-mail to info@giftoflife.on.ca requesting that a consent form be mailed to you. The completed form should be returned to the address on the form.
- A donor card is included with each new driver's license or license renewal mailed in Ontario
Please have this conversation with your family. Please register your consent. And please make sure you are marked as a "DONOR" on your license.
This is the greatest gift you will ever give someone. It's still the greatest gift I ever received, although my U2 IPOD was a close second...
TRILLIUM GIFT OF LIFE NETWORK
Here’s how to indicate your wishes to be an organ and tissue donor in Ontario:
Talk to your family
- Once you have decided to become a donor, the most important step is talking to your family about your wishes. Even if you have documented your wishes by registering as a donor with the Ministry of Health and Long-Term Care, it is important that your family knows about your decision. This is because hospital staff will talk with the next-of-kin of potential donors about what their loved one would have wanted. Out of respect for grieving families, the next-of-kin are asked to provide the final consent, even if there is a signed consent indicated on your health card.
Register your consent to save lives
- Have your consent linked to your health card in the Ministry of Health and Long-Term Care centralized data bank so that it is accessible 24/7. Registering your consent to donate means your family will have the comfort of knowing that they are supporting your wishes and will be relieved of the burden to make that decision on your behalf.
- The Gift of Life Consent Form 3750-84 is available through the Ministry's website at http://www.health.gov.on.ca/english/public/forms/form_menus/ohip_fm.html ; available at your local Service Ontario Health Card Services -OHIP Office or outreach site in Ontario; and through Trillium Gift of Life Network by calling 416-363-4001 or Toll-free 1-800-263-2833, and through our website at www.giftoflife.on.ca - or send an e-mail to info@giftoflife.on.ca requesting that a consent form be mailed to you. The completed form should be returned to the address on the form.
- A donor card is included with each new driver's license or license renewal mailed in Ontario
Please have this conversation with your family. Please register your consent. And please make sure you are marked as a "DONOR" on your license.
This is the greatest gift you will ever give someone. It's still the greatest gift I ever received, although my U2 IPOD was a close second...
Monday, May 11, 2009
Flinch
I just woke up because my 14 year-old basset began panting in my face. Naive, I'm not. She's old, overweight, and it's probably her heart. But I must confess, it's not the only reason I've been tossing and turning all night.
When Kevin set up a blog for me, I warned him that I wanted to be completely honest. What would be the point in recounting tales of warm breezes and blossoming trees? If you want excessive description, pick up Victor Hugo. Quite frankly, being forthright is as necessary for me as it is to breathe. I think we misuse the term "confrontational". It's one thing to be direct and quite another to be cruel. Cruel, I am not.
But how to marry (excuse the pun) this with a husband who is excessively private by nature?
You got me.
My wise Toronto friend M articulated it best. We all have filters through which we view and process our experiences. I believe these filters are made up of our past, those we surround ourselves with and our genetics. My childhood was shrouded in secrecy. There is little I know about my father, although there is much I can guess at. How I wish it was all on the table-the good, the bad and the ugly. There is nothing to be gained from hiding the truth away. Only a desperate longing to know more. And a resentment that grows over time.
As Kevin once said, "You're always fighting". True enough. Fighting for my health. Fighting for the truth. Fighting for a ridiculous career. Perhaps this is what attracted me to acting, storytelling and now writing. Unclogging my filter. Ambitious? Yes.
And with that ambition comes friction and tension. Others' filters have a different view from mine. Gloriously different. I welcome the outbursts and the opinions. Without them, I would never be forced to think. To analyze or mull. And after the storm, there comes a growth. A deepening of friendship and a broadening of respect. And if there doesn't, there wasn't much of a relationship to begin with.
This is what I believe.
When Kevin set up a blog for me, I warned him that I wanted to be completely honest. What would be the point in recounting tales of warm breezes and blossoming trees? If you want excessive description, pick up Victor Hugo. Quite frankly, being forthright is as necessary for me as it is to breathe. I think we misuse the term "confrontational". It's one thing to be direct and quite another to be cruel. Cruel, I am not.
But how to marry (excuse the pun) this with a husband who is excessively private by nature?
You got me.
My wise Toronto friend M articulated it best. We all have filters through which we view and process our experiences. I believe these filters are made up of our past, those we surround ourselves with and our genetics. My childhood was shrouded in secrecy. There is little I know about my father, although there is much I can guess at. How I wish it was all on the table-the good, the bad and the ugly. There is nothing to be gained from hiding the truth away. Only a desperate longing to know more. And a resentment that grows over time.
As Kevin once said, "You're always fighting". True enough. Fighting for my health. Fighting for the truth. Fighting for a ridiculous career. Perhaps this is what attracted me to acting, storytelling and now writing. Unclogging my filter. Ambitious? Yes.
And with that ambition comes friction and tension. Others' filters have a different view from mine. Gloriously different. I welcome the outbursts and the opinions. Without them, I would never be forced to think. To analyze or mull. And after the storm, there comes a growth. A deepening of friendship and a broadening of respect. And if there doesn't, there wasn't much of a relationship to begin with.
This is what I believe.
Sunday, May 10, 2009
Twisted Logic
The last thing I wanted to do was insult my friends. They are my family and I hold them in the highest esteem.
When I wrote "no-one respects homemakers", I was speaking from my OWN experiences. I remember all too vividly the inquiries as to my career that slowly began to fade away. The pity in people's eyes. The glazed look of disappointment that I was no longer acting. Quite frankly, they wanted to hear I was starring in a movie of the week, not picking up my dog's poop.
Do I believe homemakers are vital, essential and valuable? Yes. Do I miss my career? Yes. But I still believe society values professionals over us. Perhaps they shouldn't, but they are more impressed by thriving careers any day, anytime. This has been my experience and my sadness.
I think homemakers are amazing and undervalued. Especially the moms.
Please forgive my outburst. It was simply a reflection of all I have lost, and all that I wish to reclaim...
When I wrote "no-one respects homemakers", I was speaking from my OWN experiences. I remember all too vividly the inquiries as to my career that slowly began to fade away. The pity in people's eyes. The glazed look of disappointment that I was no longer acting. Quite frankly, they wanted to hear I was starring in a movie of the week, not picking up my dog's poop.
Do I believe homemakers are vital, essential and valuable? Yes. Do I miss my career? Yes. But I still believe society values professionals over us. Perhaps they shouldn't, but they are more impressed by thriving careers any day, anytime. This has been my experience and my sadness.
I think homemakers are amazing and undervalued. Especially the moms.
Please forgive my outburst. It was simply a reflection of all I have lost, and all that I wish to reclaim...
Something in the Way
Melancholy pervades.
Today I missed out on two great events. The basset ranch "hoe down" that we love frequenting. There's no hound cuter than my Daisy adorned in her cowboy hat and bandana. It's a great way to raise money and we have loved attending in the past. But today I was reluctantly attached to my toilet. Antibiotics can kick your ass..
There was also a friend's birthday party I was disappointed to miss. Technically I wasn't invited, although Kevin was. This omission saddened me. Another indication that my illness informs the decisions my friends make. It kills me that I am missing out on life. What an amazing Saturday this would have been.
I try not to feel sorry for myself, but I often feel remorse and sadness over the loss of my health. Am I jealous of those whom are healthy? You bet! Do I want a creatinine of 3.3? No. Do I wish the staff at Dr. Dauer's didn't know my name? Yes. And do I wish I didn't have constant medical bills? Yes.
My guilt consumes me. Completely. I used to be productive, self-sufficient and independent. I hate feeling useless. C'mon. No-one respects homemakers. So I clean, shop, organize, pick up poos, and help Kevin as best I can. But times are tough. And I make no money, and no-one respects that. Society values those whom monetarily thrive. Not to mention the loss of my acting career. But hey, life throws you some curves, eh?
Yeah, I'm sad. I want so much more for myself, and and I want to give Kevin so much more, too. He deserves so much more than this. And I'm scared about the long road ahead that we need to travel...
And so tonight I channel Kurt Cobain, because, for me, there is definitely "something in the way"...
Today I missed out on two great events. The basset ranch "hoe down" that we love frequenting. There's no hound cuter than my Daisy adorned in her cowboy hat and bandana. It's a great way to raise money and we have loved attending in the past. But today I was reluctantly attached to my toilet. Antibiotics can kick your ass..
There was also a friend's birthday party I was disappointed to miss. Technically I wasn't invited, although Kevin was. This omission saddened me. Another indication that my illness informs the decisions my friends make. It kills me that I am missing out on life. What an amazing Saturday this would have been.
I try not to feel sorry for myself, but I often feel remorse and sadness over the loss of my health. Am I jealous of those whom are healthy? You bet! Do I want a creatinine of 3.3? No. Do I wish the staff at Dr. Dauer's didn't know my name? Yes. And do I wish I didn't have constant medical bills? Yes.
My guilt consumes me. Completely. I used to be productive, self-sufficient and independent. I hate feeling useless. C'mon. No-one respects homemakers. So I clean, shop, organize, pick up poos, and help Kevin as best I can. But times are tough. And I make no money, and no-one respects that. Society values those whom monetarily thrive. Not to mention the loss of my acting career. But hey, life throws you some curves, eh?
Yeah, I'm sad. I want so much more for myself, and and I want to give Kevin so much more, too. He deserves so much more than this. And I'm scared about the long road ahead that we need to travel...
And so tonight I channel Kurt Cobain, because, for me, there is definitely "something in the way"...
Friday, May 8, 2009
Unforgettable?
I recently saw Natalie Cole on CNN speaking about her need for a kidney transplant. Curious, I tuned in and was duly disappointed.
There she was, at age 59, made up, glowing and adorned in a strapless, emerald gown. Not the picture of chronic illness to be certain. She was perky, animated and energetic. Disappointment filled my heart.
As a celebrity, I expected more from her. Her facts were vague and her attitude was too perky.
And then I realized that she had two agendas...
As I reminded Kevin, Natalie still has her kidneys (even though she is on dialysis), therefore she is less susceptible to infection as I have a transplant and am on many meds. And so she doesn't get sick the way I do.
In addition, I realized that she is now on tour and I suspect she doesn't want fans to worry that she will cancel. I realized there is so much misinformation about kidney transplants. Even Larry King thought she was in a life or death situation.
SHEESH.
What annoyed me more than anything was her blaze attitude towards dialysis. Yeah, I would love dialysis in Milan, Indonesia etc...but my experience was horrendous. Even George Lopez admitted as much. Again, I think she was playing her situation down, and I feel like that was immensely irresponsible.
And so I encourage everyone to educate themselves on this issue. Please become a donor. It takes but just a minute.
Hey, I love dressing up with the best of them, but shimmering on TV is no way to shine a light on chronic illness...
There she was, at age 59, made up, glowing and adorned in a strapless, emerald gown. Not the picture of chronic illness to be certain. She was perky, animated and energetic. Disappointment filled my heart.
As a celebrity, I expected more from her. Her facts were vague and her attitude was too perky.
And then I realized that she had two agendas...
As I reminded Kevin, Natalie still has her kidneys (even though she is on dialysis), therefore she is less susceptible to infection as I have a transplant and am on many meds. And so she doesn't get sick the way I do.
In addition, I realized that she is now on tour and I suspect she doesn't want fans to worry that she will cancel. I realized there is so much misinformation about kidney transplants. Even Larry King thought she was in a life or death situation.
SHEESH.
What annoyed me more than anything was her blaze attitude towards dialysis. Yeah, I would love dialysis in Milan, Indonesia etc...but my experience was horrendous. Even George Lopez admitted as much. Again, I think she was playing her situation down, and I feel like that was immensely irresponsible.
And so I encourage everyone to educate themselves on this issue. Please become a donor. It takes but just a minute.
Hey, I love dressing up with the best of them, but shimmering on TV is no way to shine a light on chronic illness...
Wednesday, May 6, 2009
If a picture's worth a thousand words?
I recently posted some pictures on Facebook of our recent trips to Vegas and then Tennessee. I admit, I hesitated. There I was by The Golden Nugget pool, prancing around in a teeny, tiny bikini having beaucoup de fun! And Tennessee found me hugging and kissing on my godson, and teaching him the subtleties of the "jumping shot". I mulled. I wondered if anyone would comment the way I suspected they might. And then yesterday it happened. One of my Danish cousins remarked on how it was too bad my kidney function is now lower than 15%, because, well, I looked so good!
SIGH.
I suspected this might happen. My insightful husband voiced his concern about this months ago. Ever protective of me, he worried that if I looked too good, people might not take me seriously.
BIGGER SIGH.
But I believe it's necessary to trust your relationships, and I believe that those whom truly love me understand every aspect of my situation. For those that don't, I have two words for you...
And so, my dilemma. Am I to hide away from the world, no pictures, no socializing, no traveling, because folk might think I LOOK TOO GOOD?
No way, no how, baby.
For those of you not chronically ill, let me share a secret with you. You have good days and you have bad days. And as the bad days exponentially increase, your desire to cherish the good days does as well. When my eyes open in the morning to one of those, I don't quite jump out of bed but, I dress up, have fun and be as active as I can.
What no-one knows is that I slept 16 hours the first night in Tennessee. I had insomnia 3 times that kept me up until 5:30 am in the morning. And on the last day, I caught an infection from my friends' 1 year-old that I am now on antibiotics for. But, why would I post pictures of all that? I don't want to remember any of it.
I realize my good days are quickly disappearing. Since returning, I have been bed-ridden with conjunctivitis, fever, cough, congestion, and my blood pressure is high, high, high. The worst way to destroy the kidney is high blood pressure. My latest creatinine was 3.3, up from 2.8. I am now only 0.2 away from being placed on the national donor registry.
It hurts my heart to embrace life so completely, and then suddenly be placed on hold, in bed, shuttling back and forth to Cedars. It's a mind trip to be certain. I resent that the majority of my energy has to be focused on this, but I'm trying to be grateful. And one way I can do this is by celebrating. Who knows how many more trips Kevin and I can take before all of this is said and done?
Whatever that means.
And so, I'll be snapping away. Those are the stories I want to remember.
Subscribe to:
Posts (Atom)