My Life Ever After

HIV: My Story - World AIDS Day 2009 It’s dark and early on...

Tue, 01 Dec 2009 06:40:00 -0800

HIV: My Story - World AIDS Day 2009

It’s dark and early on a cool October day in 2008. I’ve been dizzy, short of breath, and feeling flu-like for the past few days. Somehow today feels different. Today, I can’t even sit up without the room spinning out of control. My appetite waned, and my meals were a forced three portions of bird feed per day. Several days earlier, I come home to visit my parents from San Francisco, where I was living. Thank God I was home. By home, I mean in my parents’ house, where I grew up, in my warm bed among my caring family. This is the day my loving mom and dad would take me to the emergency room, and my life would take a turn.

I don’t too much remember getting from my bed to the hospital. I have a few memories of events leading up to my being admitted to the hospital. One particular event involved me being assisted to the restroom and left to do my business alone. Thank you for that moment of zen. My world, at that moment, calmed. There was no spinning, and I felt my breathing less labored as before. So, I decided I could get myself out of the restroom and walk back to my doctor’s office on my own. I stood, walked towards the door, turned the handle, and stepped out into the hallway. It’s as if being blind-sided by a semi truck. At the same time my foot hit the floor, my knees buckled beneath me. I hit the floor like a ton of bricks. Well, at a buck-o-five (105 lbs.), I wasn’t creating any kind of blip on the richter scale. But, the drop was enough to make my mom gasp and come running towards me. All I could think was that I hated myself for startling and worrying my mom.

Several hours later, I am in my hospital room. Both of my parents were with me, asking me if I needed anything. With my parents in the room, I had all I needed. The next 10 days were filled with tests and questions about what could possibly be wrong. My closest family and friends provided a steady stream of love and support. Thank you to all of them, especially for the mouth watering red velvet cupcakes.

On one particular visit, my brother and sister came to visit. I am very blessed to have a tight-knit, loving family. We laugh a lot. This time with my siblings was no different. Within minutes of their arrival, I was busting a gut. With my breathing still labored but on oxygen, I was fine for the first few minutes. Suddenly, I could not catch my breath, and I began hyperventilating. My sister called for my nurse. I called for Dr. Doug Ross. I had to lie flat, and the room started spinning out of control. Fade to black. Side note for those wondering who the heck Dr. Doug Ross might be. He was George Clooney’s character on E.R. Hey! If you thought you were going down, wouldn’t you want to look at George Clooney the entire time? It was either him or Dr. Philip Chandler, Denzel Washington’s character on St. Elsewhere.

Back to reality, I awoke in a new room. As I scanned the room, I saw a lot of crazy Alien-looking equipment overhead and throughout the space. After only a few minutes, my doctor came in. He told me he needed to do a lung biopsy to help him come to a diagnosis so I could provide a proper treatment. He assured me it was a harmless process, but it sounded gnarly to me. You’re going to put a tool through my nose, down my throat and cut a miniscule piece of my lung for testing? Ewwww! Thankfully, I’d be asleep the entire time.

I don’t recall, specifically, but my results came back within a day or two. My parents were in the room when my doctor came in to share the results. He asked if it was okay for them to be in the room when he revealed his findings. Of course. They are my parents. “Ok” he said. “You have Pneumocystis Carnini Pneumonia (PCP).” Prior to this news, the doctor’s were treating me for a bad case of text book pneumonia. “What this means” he continued, “is that you have HIV.” Whoa! I remember being shocked then quickly moving my sights to my parents. Without missing a beat, my dad look at the doctor and asks, “So what do we need to do to help our daughter?” That momentary feeling of being shocked and scared disappeared. In an instant, my dad changed my thinking from oh my God to - right. What do “we” do now. I knew I was going to be okay with the support of my family and the with guidance of my doctors.

Little more than a year later, I am healthy and strong. I am training for Ironman Arizona taking place in Tempe in just under 12 months. For those of you who don’t know me, I have been an athlete my entire life, so health and fitness have been a way of life. Competitive sports and working out is as integral in my lifestyle as breathing and eating. The year it took me to get my body healthy enough to get back in the saddle was an anomaly. And, it only took so long for me, because I was trying to come back too fast. My body apparently needed more time than I was allowing. During the past 12 months, I was admitted to the hospital again, for pneumonia, 8 months after my initial hospitalization in 2008. Now, I am ready. By the grace of God, my crazy awesome family and friends, I am on my way.

I decided, this World AIDS Day, to share the story of some events leading up to my diagnosis to show the kind of support I had during a rough patch in my life. From this story, I hope to convey the love and support I had and still have. My thoughts are with those who experience their discovery of being HIV positive and are living without the support of a loved one. I wondered how they feel and what they need to help them through? It has become so very important to me to help those with HIV/AIDS to have the kind of love and support available to them that I have been so fortunate to have. How does anyone deal with such a life changing event alone? People do it everyday. Based on personal accounts shared with me, it is a dark and lonely place. This is not acceptable. No one should ever have to be alone.

My day-to-day life now is just as it was prior to my diagnosis. The only difference is that I am taking a few more pills with my vitamins every morning. I guess my hope is that my story will motivate you, anyone who reads this, to look around. See those people who are hurting, especially as we enter our holiday season here in the United States. Regardless of the circumstance, homlessness, negative health diagnosis (HIV/AIDS, cancer, for example), or being away from home. Reach out and touch someone’s life. Just let them know you care. It is the greatest gift anyone can give to another living being.

Get involved in the lives of others. To show your support on this World AIDS Day, visit AIDS.gov and find out what you can do.

To all of you who have taken this journey with me, I thank you from the depths of my heart. Now, let’s do the damn thing!

Introduction to the AIDS Drug Assistance Program

Fri, 24 Jul 2009 08:44:00 -0700

In my July 8th post sharing some basic information about County, State and Federally funded healthcare progams, I promised to get some detailed information for as many sates as possible.

HIV Positive magazine posted a great resource to their website listing, by state, ADAP requirements and information.

ADAP has helped me. It is literally a life saver. I cannot afford the $2,000 per month my meds were costing. As an ADAP member, I now receive All of my medications for free.

Make no mistake about it. ADAP is a well-deserved benefit of being a tax payer. If you’re looking for assistance with your meds, please check out this resource.

From HIVPositive.com

“The AIDS Drug Assistance Program (ADAP) is federally-funded, but it is state administered. The amount of money each state receives depends on the number of documented AIDS cases in the state. States with a lot of AIDS cases get a lot of money for their ADAP program, while others get very little. Some add state money to the amount they get from the federal government, and some do not. As a result, the qualifications for ADAP and the drugs the program covers vary widely from state to state!”

Are you an existing ADAP participant? How is it working out for you?

Please let me know in the comments at www.mylifeeverafter.com

CA State Health and Human Services Budget Summer '09

Fri, 24 Jul 2009 08:43:27 -0700

CA State Health and Human Services Budget Summer '09:

Reading through the detail for the Health and Human Services budget for 2009. It looks like Medi-Cal, MSI, and CalPers are safe for now. ADAP (drug assistance program - saving me $2,000 monthly) looks okay, too. Whew!

Aloha y’all. I haven’t forgotten about you. The last few days have been a whirlwind with...

Wed, 15 Jul 2009 08:07:24 -0700

Aloha y’all. I haven’t forgotten about you. The last few days have been a whirlwind with Emergency Room visit because of my bad gas in my chest and follow-up appointments. Feel like I’m spending 25-30 hours a week at hospitals. If it keeps me healthy and able to keep living? I’m all for it. :)

Thanks all for your patience.

Isn’t she beautiful. She weighs in at 4.8 ounces (135...

Mon, 13 Jul 2009 18:55:38 -0700

Isn’t she beautiful. She weighs in at 4.8 ounces (135 grams) and 4.5 inches (115.5 mm)

How do you do you feel about putting your health and medical...

Fri, 10 Jul 2009 13:09:46 -0700

How do you do you feel about putting your health and medical information online?

There are two different types of services.

1. Personal Health Record (PHR: This is your collection of health and medical information. AtMyPHR.com, if you’re not comfortable putting this information online, forms are available for printing to keep your information offline.

2. Electronic Health Records (EHR

EHR’s involve hospitals and other medical institutions putting your medical information online (protected) for your access. The information might include: test results, medications, medical allergies, etc.

I use two online services: MyPHR (www.myphr.com) and Google Health (www.google.com/health). I like sharing the information with my family including my calendar of doc and other health-related appoints and contact information.

Are/would you put your health and medical information online?

Let me know what you think.

mylifeeverafter.com

Show Notes Day

Thu, 09 Jul 2009 05:27:23 -0700

Aloha All! No video today, because I am going to figure out my “Show Notes” workflow today and get show notes up for the previous 3 episodes before I get behind. I may do this every so often, and today is one of those days.

Please join me tomorrow for episode #4.

Thanks for understanding.

Get help from some free and low cost county and medical...

Wed, 08 Jul 2009 06:37:39 -0700

Get help from some free and low cost county and medical healthcare service available in California. I am working on finding out more about facitilities and services and programs available in other states.

If you are in dire need of some help, please reach out and let me know how I can help.

mylifeeverafter.com

Me and my first boyfriend.

Wed, 08 Jul 2009 02:01:08 -0700

Me and my first boyfriend.

Yeast overgrowth in the body is a common issue. When it happens...

Tue, 07 Jul 2009 23:09:00 -0700

Yeast overgrowth in the body is a common issue. When it happens it prevents the immune system from performing optimally. Then, we get sick.

What is it? What can I do about it? Find out on episode #2 of My Life Ever After.

Please visit my blog at www.mylifeeverafter.com

http://www.cafepress.com/mylifeeverafter

Mon, 06 Jul 2009 14:54:17 -0700

http://www.cafepress.com/mylifeeverafter:

My Life Ever After’s t-shirts just went on sale. More colors, styles coming soon. Check it out. Thanks.

Registering for AIDS Service Foundation of Orange County

Mon, 06 Jul 2009 12:14:10 -0700

Registering for AIDS Service Foundation of Orange County

Please check out my new project. Let me know what you think....

Mon, 06 Jul 2009 07:54:10 -0700

Please check out my new project. Let me know what you think. Thanks.

http://www.youtube.com/watch?v=bmXFDEAsA1o

Mon, 06 Jul 2009 06:26:39 -0700

http://www.youtube.com/watch?v=bmXFDEAsA1o:

Please check out my new project, “My Life Ever Ever After”. Let me know what you think.

Liana Perfece end to weekend, day and dinner. Just ate a heated up chocolate, chocolate cookie and put vanilla ice cream on it. Nom. Nom. Nom. Liana Lehua Producer / Techonista http://lianalehua.com.

Sun, 05 Jul 2009 21:40:34 -0700

Liana Perfece end to weekend, day and dinner. Just ate a heated up chocolate, chocolate cookie and put vanilla ice cream on it. Nom. Nom. Nom. Liana Lehua Producer / Techonista http://lianalehua.com.:

Perfece end to weekend, day and dinner. Just ate a heated up chocolate, chocolate cookie and put vanilla ice cream on it. Nom. Nom. Nom. Liana Lehua Producer / Techonista http://lianalehua.com.

Liana Food coma.

Sun, 05 Jul 2009 21:40:33 -0700

Liana Food coma.:

Food coma.

Liana Anyone else a fan of leftovers like I am? Especially, Forth of July leftovers? Yum. Just going to grill new burgers. Yay! Cold pizza is a good leftover. Any fave foods you can eat the next day? Liana Lehua Producer / Techonista http://lianalehua.com.

Sun, 05 Jul 2009 20:10:04 -0700

Liana Anyone else a fan of leftovers like I am? Especially, Forth of July leftovers? Yum. Just going to grill new burgers. Yay! Cold pizza is a good leftover. Any fave foods you can eat the next day? Liana Lehua Producer / Techonista http://lianalehua.com.:

Anyone else a fan of leftovers like I am? Especially, Forth of July leftovers? Yum. Just going to grill new burgers. Yay! Cold pizza is a good leftover. Any fave foods you can eat the next day? Liana…

Liana want to go outside/beach today but very tired :( what are you all doing?

Sun, 05 Jul 2009 14:33:28 -0700

Liana want to go outside/beach today but very tired :( what are you all doing?:

want to go outside/beach today but very tired :( what are you all doing?

Liana http://ping.fm/p/Ingfh - HAD to eat two buttercream cupcakes to get these.

Sun, 05 Jul 2009 14:33:28 -0700

Liana http://ping.fm/p/Ingfh - HAD to eat two buttercream cupcakes to get these.:

http://ping.fm/p/Ingfh - HAD to eat two buttercream cupcakes to get these.

Liana Watching @OasisLA's Live Broadcast of their noon (PT) service. Worship now, then message: Roomates, Bad Dates, and Great Mates. http://ping.fm/npQwK.

Sun, 05 Jul 2009 13:13:32 -0700

Liana Watching @OasisLA's Live Broadcast of their noon (PT) service. Worship now, then message: Roomates, Bad Dates, and Great Mates. http://ping.fm/npQwK.:

Watching @OasisLA’s Live Broadcast of their noon (PT) service. Worship now, then message: Roomates, Bad Dates, and Great Mates. http://ping.fm/npQwK.