Something was seriously wrong and now I know what!

I was fully crying as I spoke on the phone with my mom.  My day was ruined. I was beside myself. I’d spent hours on the phone being transferred and belittled by Kaiser operators and admins.

After several years of getting nowhere with my primary care doc about my stomach pain and extreme constipation (you may remember the TMI blog), I spoke with my new Latina gynecologist about my issues and she immediately referred me for a colonoscopy. But now here I was pleading with all the gatekeepers for an appointment with a GI doc before the procedure to discuss my issues. They ran me ragged with “no.”

A simple referral to talk to the GI doc that was all I was asking for. With a family history of Crohn’s, IBS, and Celiac it seemed like a reasonable request. But I was getting nowhere. They were just going to do the colonoscopy and tell me the results. My primary care doc’s nurse said they’d get back to me. I contacted my gynecologist for a referral.

A week later they got back to me. The gynecologist’s referral had gone through. As I spoke with the GI doc, we discussed my symptoms and my medications. I also mentioned the supplements I was taking. Peri-menopausal for several years now, I take calcium and some other things to address what I thought were other perimenopausal symptoms: brain fog, sleep disturbance, and memory loss. The GI doc ordered some blood work. That afternoon her office called me. They were referring me to an endocrinologist and wanted me to make the appointment ASAP. I did. I was right, something was very wrong.

I sat on the paper covered hospital examination bed across from the handsome bespectacled black doctor whose name was Dr. Thomas. “You have a condition called primary hyperparathyroidism” he said. “You have a tumor, most likely benign, on your parathyroid gland which causes your body to leach calcium from your bones and dump it into your bloodstream. You’ll need surgery ASAP. You’ve most likely this tumor for a while.”

He explained the effect of the growth on my parathyroid and how it explained all of the strange symptoms I had, including the extreme constipation I’d embarrassingly been struggling with for years to no avail. It also explained the severe brain fog, and the memory loss I’d been trying to cope with. For years I’d felt like my brain was broken and was mourning the loss of my memory and my ability to think clearly.  It seemed like my perimenopausal symptoms were on steroids. I felt both relieved and enraged.

I was so mad at my primary care physician for blowing me off. She’d been dismissive and casual with my concerns, handing me a stupid pamphlet on how to deal with hemmroids which is a wonderful side effect of extreme constipation. I looked at Dr. Thomas and calmly said, “I’m a college educated, professional, English speaking, Caucasian American citizen, and I’m not afraid of challenging authority. If I couldn’t get someone to listen to me, I can’t imagine how someone who does not have all those social privileges gets treated by this system and what kind of subpar healthcare they’re getting. This is an epic fail.”  He calmly nodded his head.

I went home and deleted my primary care doc from my online Kaiser file. I went to the pharmacy to pick up the medication Dr. Thomas prescribed that was supposed to lower the calcium levels in my blood. The guy at the pharmacy gasped as he rang me up. “That will be $500,” he said. “For 30 pills?” I said. He tried to run it again and see if it was a mistake. It wasn’t. “That’s $65 of pills a day,” I calculated, incredulous. Turns out the California Covered Kaiser plan I signed up for which included a few a visits to the doctor and was for relatively healthy people sucked. I’ve since paid $2000 for these pills since it’s taken 8 weeks to schedule the surgery which is $20,000 and scheduled for December 6th.

I realize this is a downer of a blog and very personal, so on the positive side…. which is what I’m trying to focus on, is that after I spend $7, 000 out of my pocket the insurance pays the difference. Car insurance is so much easier to understand and with lower deductible.

It feels important to share this with you because:

  • It’s a reminder that you have to be an active advocate for your health and your healthcare. Don’t let the system make you feel like you’re the problem.

Don’t let the system profit at the expense of your well-being. Don’t let them cut costs by cutting back on referrals while they profit from big pharma by pushing their flu shots. I’ve been offered a flu shot at every turn. They even wheeled into the pharmacy and offered me one while I was waiting in line. I’ve since learned that Kaiser docs are discouraged from making referrals. I bless my gynecologist who listened to me, empathized with me, and referred me for a colonoscopy and to the GI doc.

I can’t even imagine what would happen had she not put in the referral to the GI doc. The colonoscopy would have come back normal and I’d still have extreme constipation, continued bone less, memory issues, kidney pain and brain fog, until things got worse. A friend of mine just shared with me that they discovered her daughter had this same condition after she almost died of complications of a kidney stone.

  • Take the time to read and understand your healthcare plan.

I’m not sure if I would have done better paying a higher premium. It may end up being about the same amount of money. But if I had paid a higher premium, I would have a better plan and could have paid the $7,000 over 12 months, instead of needing to pay it all in 2 months, in addition to my monthly premium payments. So make sure you really understand your healthcare plan as you renew it this month.

Bottom line friends, other countries have socialized medicine—free healthcare. I have a client whose relocated to the UK from the USA and is currently enjoying exceptional free healthcare. I’ll figure out how to pay my $7,000 bill, but for some people $7,000 would break them. And furthermore, is it reasonable for an individual to have to pay $10,000 a year for healthcare and for a plan that skimps on referrals? That was a rhetorical question!

On the positive side, which I also want to focus on is my prognosis.  People with my condition have had positive results with surgery. After they cut out the growth, with the exception of some bone density loss, I should go back to “normal.”  And for that, I am most grateful!

Please hold me in your thoughts and prayers on December 6th and know with me an easy and successful surgery and a speedy recovery.

Thank you and remember to follow your inner compass and take back your life!

Love and Trans-formation!

Love and Trans-formation!

For 45 years Rachel Love was a conservative, heterosexual male. She worked in the coal/nuclear industry for Southern California Edison for 27 of those 45 years. In 1999, she had an awakening about her real self which was later confirmed by her grandmother’s death bed confession about her being born “messed up” (intersexed).

It was then that she realized she was a woman. That Halloween, she ventured out in women’s clothing. Rachel endured the gossip and teasing of her co-workers through the holidays and in the beginning of the new millennium, Jan 6, 2000, she had an official gender change and began living full time as a woman.

That’s when her life turned upside down!

Her employer, Southern California Edison, made her re-interview for her job. Since she was hired as a man, and was now living as a woman, her employer believed that she was no longer qualified to do the work she’d been doing as a man for 27 years. She was even targeted and protested by local Christians who perceived her as the anti-Christ during the Y2K scare, one person even “pissed” on her.

Ultimately, she was chased out of her job and went from living a middle-class lifestyle in the Los Angeles area to living in abject poverty in the outskirts of San Bernadino County surrounded by women struggling to survive through sex work. It was a radical shift and even through the crushing loss, and her feeling abandoned by God, Rachel’s empathy grew as did her resolve to help others.

Rachel ended up in the Midwest. While living in Arkansas, she decided to run for mayor of a small city. She didn’t win, but she was well-liked and respected by the community for her courage, humanitarianism and sense of humor. Rachel became ordained as a minister of the Assembly of God.

Later she relocated to Tulsa where she has continued to be an activist and change agent. Rachel believes in giving back to her community and has created several charities and organizations to raise funds and awareness for the causes she believes in. She is Vice President of The National Center for Inclusion, a nonprofit organization for Human Rights. Rachel is also a Transition Coach for Engage Life Institute, a pastor of Sacred Hoop Interfaith Center, and founder of “It Shouldn’t Hurt. Com” a social media campaign against child abuse.

“I am Victorious Not a Victim!”

Rachel wants people to know that she is “a victorious person not a victim.” While she acknowledges the pain that she and so many have experienced, she says, “It was a learning experience that taught me so much about who I really am. I wouldn’t wish my struggles on any one but I am blessed because of those experiences.”

Love has recently taken her message of victory, inclusion and acceptance to the radio waves! Currently she has two shows. “We Are Family – Our Story” and is Co Host of “Living Out Loud -No Fear -No Regrets” on a2zen.fm.

Listen In

I will be a guest on the Rachel Love Show on October 23 at 8:00 PM PST.

Tune into a2zen.fm to listen to my interview with Rachel Love!

 

You can also listen to a powerful and tear-jerking interview where Rachel shares her personal story. Click here to listen to Rachel’s courageous sharing. No one should have to go through what Rachel went through.

Intersex Information

According to The Intersex Society of North America (ISNA): “If you ask experts at medical centers how often a child is born so noticeably atypical in terms of genitalia that a specialist in sex differentiation is called in, the number comes out to about 1 in 1500 to 1 in 2000 births.”

They define intersex as “a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male.” ISNA is “devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female.” They believe that:

Go to http://www.isna.org/ to learn more about The Intersex Society of North America (ISNA).