Welcome to Hotel Henry Mayo

I am still trying to wrap my head around what happened. What went wrong.

Except nothing went wrong. At least, not that I can pinpoint just yet.

I got a stomach bug. Just a simple stomach bug.

I was learning my limits. Learning to deal with this disorder. Learning how to live again and all of the sudden…a three night, four-day stay in hotel Hospital complete with blood transfusion.

Still trying to assess hospital damage physically and emotionally on entire house

Thank you to all the friends and family who brought over meals, visited, and were just plain there to listen as we waded through the unexpected stay.

I have so much more to tell you and to say…about how this came just days after a very stressful test by my disability insurance company, wanting to make sure I really deserve that check they give me…about how this came after telling White House staffers living with a chronic illness means I could be hospitalized at any time (bingo!) and our lives turned upside down- like so many millions of Americans. And about my roommates, the first of which did not have insurance. The second was trying to figure out Cobra and send in a check on time so her hospital stay would be covered.

Sometimes I wonder how we Americans survive. I have to think about the bills that will arrive from this stay instead of concentrating on getting well. And worry that my disability check could be gone at any time for any reason as they put me through test after test to make sure I’m really sick.

Maybe this last round of treatment that had to be administered in the hospital, and two units of AB – transfused in the hospital, will be enough for Mutual of Omaha.

Probably not.

Then again I have my appeal for Social Security disability in October…

I am thankful the Affordable Care Act means Aetna can’t fight as hard to throw me off my husband’s insurance when they see I was admitted and received a ton of treatment. And that those lifetime caps aren’t an issue- or we’d be screwed. I don’t think people understand just how important this first step at changing our heath care system really is…and the GOP fight to take down ‘ObamaCare’ wages on while we sit in hospital beds moaning and complaining about the system.

Here is that first step at changing the system. Just a reminder. It may not matter to you right now, but it will eventually. When you’re at the ER with your kid, or when you’re taking your Mom to get her physical (a ton of preventative care measures are free now). I know, I know. I’ll stop. But not until you go check out HealthCare.Gov and at least know how it will all affect your family.

More later as my crusade continues…just not from a hospital bed this time. I hope.


  1. txvoodoo says:

    ALL the hugs, thoughts, etc to you.

    Riding that tightwire of nerves myself now. Please, diety, don’t let me catch anything. I can’t afford it.

  2. The healthcare system in the US is ridiculous. They make you go through so many goddamn hoops just to make sure you stay in the system, and sometimes even that isn’t enough! I remember when someone caused an error that removed my mom’s coverage, and we had to fight tooth and nail to get it back…and when we did, they decided it was grounds to raise her fees.

    There’s a special place in Hell for Health Care bureaucrats, right next to pedophiles and terrorists.

  3. I am so glad you got out of there before the holiday weekend staff, and interns showed up. Your arms could have looked worse. Lotion with vitamin E can help.

    One of my pet peeves is calling these services free. They really aren’t. They are at no additional cost beyond the insurance premiums.

    Free just doesn’t fit in with health care, and really, it shouldn’t. Those doctors and nurses and lab techs and so on, deserve to be paid. They don’t work for free. Those copayments we make, keep the lights on in their offices while they fight and wait for insurance checks.

    I worked for a company that ran a EAP program that provided “free” counseling to employees. It was a double-edge sword. We had a 24 hour cancellation policy, and you were supposed to lose a session if you didn’t abide. That meant the clinician didn’t get paid either. And since most policies had a cap, it meant unless the patient chose to continue out of pocket — that was that. Free just cheapens things, and makes people less accountable.

  4. I am always in awe of how difficult things are for an American with lupus – and despite the less than perfect aspects of the NHS I am deeply grateful to the British system for existing.
    Thinking of you, as ever xxx

  5. Sending you all sorts of positive thoughts from Pittsburgh. Sometimes it feels like our healthcare system is irreparably broken (and I work in health care!). I just wanted to tell you that your blog has given me tremendous insight into my husband, who has an autoimmune disease. I used to grow frustrated…I guess, shamefully, not always believing he felt as bad during a flare as he claimed. REading your blog has really helped me realize his struggles and offer him (almost) only love and support instead of advice like “maybe regular excerise will help” and dumb stuff like that. I honestly feel like our marriage is better because of your blog – I thought you should know that.

  6. I was just thinking about you the other day when I went in for my second colonoscopy (still not sure what’s causing my issues) and thought about when you talked me through the first one a few years ago. I’m so sorry you ended up in the hospital again. I’m glad you’re talking about the Affordable Care Act. My extended family seems scared of it, when I think it will really help each and every one of them to get the preventative care they need for less money so maybe they don’t actually go full blown with anything more down the road. I’m very excited for what it might mean for my self-employed sister who spends a ridiculous amount of money each month on health insurance. It’s all such a racket, and I hate everything about how healthcare in this country currently works. I’m very hopeful things will change soon.

    Hugs from KC.

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