How becoming a conservative blogger cured me of the incurable illness that was killing me

by CynthiaYockey on March 13, 2013

Andrew Breitbart is shown arguing with Leftist media gadfly, Liz Glover, who is accusing him of homophobia while he has his arm around blogger Cynthia Yockey, A Conservative Lesbian.

Because conservative donors sent me to CPAC 2012 in February, in this photo (and elsewhere, a video), I am standing with Andrew Breitbart, spoiling the Leftist narrative of gadfly, Liz Glover, who was accusing Andrew of being homophobic while he had his arm around Cynthia Yockey, A Conservative Lesbian.

I started this blog on January 12, 2009, after becoming a fiscal conservative during the presidential campaign of 2008 and changing my voter registration from Democrat to Republican that December. I am a writer and was a newspaper reporter for a couple of years in my well-spent youth, and conservative bloggers like Michelle Malkin educated me about what conservatism really is, so it was a natural evolution. My mission is to speak to the Right about gay equality, to the Left about fiscal conservatism and the Second Amendment and to everyone about health.

The biggest reason that I ran out of the Left like it was a house on fire was that I finally realized that liberalism/Progressivism/socialism are about destroying what I was counting on as my lifeline — capitalism, or as I now know it, free enterprise. That’s because to survive now, let alone after my almost 97-year-old father passes on, I have to be able to create my own business.

And why is that? Because I have floundered since my late teens with sleep disorders, although I didn’t find out they were killing me until March of 2003 when I Googled “depression daytime sleeping,” and every result came up “obstructive sleep apnea.” When I was diagnosed the next month, my doctor said my condition was so advanced that I was dying. My apneas were very long and I was close to that tipping point where the blood oxygen/CO2 feedback mechanism tells the brain to stop sending the signals to breathe. My weight had climbed to 217 pounds — sleep apnea gives you ferocious cravings for sugar and salt. My body felt like lead and my joints and muscles were wracked with pain. I had headaches almost every day. My resting heart rate was in the 120’s, irregular, and just walking from one room to another made it jump to the 160’s and 170’s. The road to recovery looked so very long and shrouded in darkness. I felt hopeless and frightened out of my wits. But my life partner, my parents and my cats all needed me. I could not shirk that duty. So I clawed my way back to life and gave my life partner and my mother excellent care until they died in December 2004 and April 2006, respectively.

However, in February 2004, despite using my CPAP respirator whenever I slept, I was still being overpowered by daytime sleepiness and needed long naps every day. My sleep doctor had me do a sleep study followed by a multiple sleep latency test and diagnosed me with idiopathic hypersomnia. I was unable to tolerate the medications for this condition. With no cure or treatment I could stand, I realized I had a disability and would have to adapt my life to cope with it. I knew my overwhelming sleepiness would get me fired from practically any job, and my resumé of caregiving and computer consulting wasn’t competitive, so I resolved to create my own job as a writer so I could work around the naps. But I was unable to pull this off because of another symptom of idiopathic hypersomnia: you never feel like you are really awake. This was costly because I bought courses to learn how to make money creating information products to sell online, but I didn’t have the energy and clarity to put all the pieces together.

In October 2006 I moved back home to live with my father, who will be 97 next month, to care for him and give him, as he says, a very happy old age. I first saved my dad’s life in the fall of 1997 by getting him away from the doctor who failed to diagnose his ostentatiously obvious case of idiopathic congestive heart failure and into the care of a cardiologist who hospitalized him immediately. He has been caring for Dad ever since (after giving him a year to live at age 81). I saved my dad’s life again in July of 2003 when I got him to a sleep doctor, who diagnosed his very severe obstructive sleep apnea. (Idiopathic congestive heart failure hasn’t really been “idiopathic” since 1996, when the first research was published pointing to obstructive sleep apnea as the cause of idiopathic congestive heart failure.)  I’ve lost count of the number of times I’ve saved Dad’s life since I moved back home. Fortunately, he’s been mostly stable since getting a pacemaker-defibrillator implanted in December 2008. That’s why I was able to start this blog the next month and redouble my efforts to save my own life and create a career for myself.

Since I have had this blog, when circumstances have forced me to ask for help, it is the kindness and generosity of other bloggers, especially dear Instapundit and dear Stacy McCain, and conservative readers, that have given me the resources that I needed to save my life.

Since I was diagnosed with idiopathic hypersomnia, I’ve done everything I could think of to cure it or cope with it. To regain my health I gardened, started playing the bassoon again, exercised, went on 5K morning walks, improved my sleep habits, improved my diet and took off over 60 pounds. I wanted so much to be able to blog my triumphant progress in recovering my health and beating an incurable, rare disease. But by June of 2012, I had to acknowledge that while I was healthier, idiopathic hypersomnia was still making it impossible for me to function well enough to have any hope of supporting myself. It was killing me. So I decided that I would have to blog about that.

That decision saved my life.

Idiopathic hypersomnia is a horrible way to die. Because it makes you fail at practically everything, it destroys your soul because it makes you despair and lose your belief in yourself. You seem lazy and unmotivated because you are never really alert. More vigorous people who wish they could take a nap in the daytime don’t realize you aren’t taking a nap as much as you have involuntarily lost consciousness. Instead of getting the help and understanding that other people with terminal conditions receive, you get abused and abandoned to death.

To be able to explain this to my dear gentle readers, I began to look online for research about how idiopathic hypersomnia kills. Luckily, instead, last July I found ONE study on TWO persons that SAVED MY LIFE: “Successful treatment with levothyroxine for idiopathic hypersomnia patients with subclinical hypothyroidism.” It’s looking to me now like ALL patients with idiopathic hypersomnia are hypothyroid despite having fairly normal blood test results. We are outliers who need higher doses of thyroid hormone than most other people do in order to be able to have refreshing sleep, be alert and free of daytime sleepiness/napping.

I e-mailed the study to my doctor and asked for an experimental 12 microgram bump in my levothyoxine dose. He agreed immediately, which made me suspicious and I requested my recent blood test results. But the new dose threw me for a loop for most of August and I didn’t wind up looking at the results until November, just before a follow-up appointment with my doctor.

When I looked at my blood test, I found out that for the last 10 years, the doctors who were supposed to be monitoring my TSH levels to ensure I was on the correct dose of levothyoxine had ignored them and failed to make sense of what should have been obvious symptoms of a common thyroid disorder, Hashimoto’s thyroiditis: fatigue, dullness and sleepiness.

What had happened started in 2003 when I was taking 100 micrograms of levothyroxine in the morning and four 5 microgram tablets of Cytomel (the T3 thyroid hormone) spaced every few hours throughout the day. (This is the equivalent of 180 mcg of levothyroxine.) However, my rapid, irregular heart rate made the endocrinologist I was seeing as part of a longitudinal study at the National Institutes of Health drop the Cytomel to see if it was causing the problem. It was not. But at the same time, I started CPAP therapy, which did cure my heart rate problems by stopping the apneas that had been putting an enormous strain on my heart. However, since two variables had changed at the same time, it was not possible to discern what had helped. And when the Cytomel was stopped, it was like a light went out in my head but I was not able to tell what had gone wrong to fix it. Plus, my life partner was in the last year of her life. I had a lot going on. So from the spring of 2003 to August 8, 2012, I was only taking 100 mcg of levothyroxine a day when I really needed 180 mcg.

I lost my home near NIH to foreclosure in 2002 because my sleep apnea was so bad I couldn’t work, so my life partner and I had been forced to move 60 miles north and live near my parents. I didn’t have the alertness and stamina to make the drive to Bethesda, so I dropped out of the study in the spring of 2003. If I’d stayed in the study with the same doctor, probably she would have increased my levothyoxine dose or put me back on Cytomel over the course of the next year. But, as I wrote above, none of the doctors I had for the last 10 years connected my symptoms with my TSH level and an insufficient thyroid dose.

I’ve been putting the puzzle together, piece by piece, since last July after reading the study I cited above. Since November, my doctor has continued increasing my levothyroxine dose in 12 to 25 mcg steps. It takes about a month to adapt to a new dose of thyroid medicine and until I found what my old dose was a couple of weeks ago, we weren’t certain where my dose would end up. When I got to 162 mcg a couple of weeks ago, I finally felt the light go back on in my head. In two more weeks, I will go to 175 mcg of levothyroxine, which I think will be the correct dose. My idiopathic hypersomnia is almost completely cured. I sleep well and wake up refreshed. If I’ve had a full night’s sleep, I feel alert all day and don’t need a nap.

Now that it looks like I have my health back, my next campaign is to create a career for myself, get on my feet financially and pay off my father’s debts and back taxes, which were racked up in his efforts to save my life. The very next step to do that is for me to attend CPAC, which starts tomorrow.  Attending CPAC allows me to meet other bloggers and undemonize myself with people who don’t believe there can be such a thing as a conservative lesbian. Last year, dear Instapundit’s generous readers’ donations sent me to CPAC and put me at Andrew Breitbart’s side at the moment when he was paradoxically being attacked as a homophobe and/or gay. And my being there gave Steven Crowder and Chris Loesch the ammunition to fight the HuffPo/Gawker/Mediaite accusations the rap song they debuted there was racist because they used a photo of me to prove their point — Steven and Chris were able to call them for mocking a conservative lesbian.

This year Stacy McCain kindly asked his readers to donate, so I am able to cover someone to care for my father tomorrow. (And congratulations to Stacy, who was named editor-in-chief of today!) However, I still need to raise $300 to pay the  caregiver for Friday, plus my gas, parking, tolls and food for Friday and Saturday. (For people who wonder why I don’t get a job — besides my health, it’s the cost of the caregiver to look after my father while I’m out of the house. But not to worry, I really am busy creating a career that will support me.)

I am grateful to everyone who donates, or sends prayers or kind thoughts. Please be patient with me regarding “thank you” e-mails — the next few days will be very long, with at least a 90-minute commute each way — I will send them Sunday after CPAC. In fact, I’ll be sending a “thank you” e-mail to everyone who has ever donated to this blog because I want them to know their generosity played a role in saving my life and that I am grateful. My plan is that once I’ve gotten all my “thank you” notes sent, I will post a few times a week while I’m finishing a writing project and then when that’s done, I will start posting regularly. I’m so glad to be back!

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