Category Health & Medical Tidbits

Good News, Bad News, Strange News

It’s a big long medical jargon phrase. Ready for it? Here goes: Chronic thromboembolic pulmonary hypertension

See, for the past year, we thought I had pulmonary hypertension. Some thought it might be pulmonary arterial hypertension, others thought just pulmonary hypertension, but nobody ever said the words Chronic thromboembolic pulmonary hypertension to me, or what is more commonly known as CTEPH. But it makes sense now that we’re getting to the bottom of what’s going on with me.

CTEPH is caused by a chronic thromboembolic disease, which basically is a fancy way of saying that someone has recurrent blood clots, usually from deep vein thrombisis–that means the clots move from the big veins, most often found in the legs or abdomen. These blood clots are usually caused by a medical condition, genetic disorder, and sometimes, though rarely, for no reason that anyone can ever find. For me, it’s likely from a chronic, undiagnoised inflammatory condition, auto-immune, and it’s looking more and more like my diagnoses from over seven years ago of Lupus was actually probably accurate. I am likely a serum negative lupus patient, and that would explain the inflammation, the immune issues, the pain, the butterfly rash everyone sees and comments on–but my ANAs are all negative. We are finding that from kidney issues to the blood clots, I’m having all the classic lupus complications, so really, at this point, ANAs seem a bit… well, useless.

Regardless, the blood clots traveled, unbeknownst to ...

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Life, In Circles

Many years ago now, I worked for a home health care agency back in Odessa. That agency was tasked with the contract with the Department of Health and Human Services, Division on Aging and Disability, to run the “provider program’. This program assisted people who were elderly or disabled and needed assistance with household tasks, like vacuuming, preparing a meal, washing dishes, doing laundry, etc, but who didn’t have insurance or other financial means to buy or utilize these things themselves.

The people who worked this program, the actual employees, didn’t even get paid minimum wage–no, seriously. Minimum wage was 5.25 and these folks–mostly women–were paid $4.85. It was government work, so somehow it was justifiable. No one worked full-time. No one received benefits. The only training they received is what little I myself, as the manager of the program, was able to provide them. The only equipment they received was a lifting belt, in case they needed to assist their client by lifting them unto bed, a couch, the toilet or the bath. The only requirement for the job: a high school diploma and successful completion of a basic criminal background check. Random drug testing was stated that it would be done, but it never was. Too expensive and the program couldn’t afford it.

Now, I want you to think for a moment: The weak...

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Virtual Fun, Drinking Fun and a Blow Fish

So far, I’ve finished about half of my book tour with Walker Author Tours. I’ve been having a lot of fun. Today, Cindy Gunnin posted a review of Celeste that made my day. I also got an interview posted by Mary Beth Magee, which is really quite… I don’t know. It made me feel… well, like she was talking about someone else. I guess I don’t really see myself the way others see me. I know I’m a survivor. I know I fight and struggle and keep on going, but I just don’t see myself in the same light as this interview made me feel. I read it and thought, “Man, I’d like to meet that person.”

Isn’t it strange how we do that to ourselves? I dunno… being an author, I’ve long known that people would talk about me (and my stories) who didn’t know me. I accepted that it wouldn’t all be roses, and it hasn’t been. I’ve been slammed–both as an author and as a person–and for some reason, that’s always easier to take than when they say the nice things. I really suck at taking a compliment, but I’ve gotten better than in my past. In my past, I would argue with people who said nice things about me. Now, I simply accept it and smile and gratiously (I hope) accept the compliment.

I learned a while back that I can also say, “I’m very glad you think so…” and be telling the truth! Ha! But it is true. I AM glad someone thinks so, even if I cannot always feel the same.

Please stop by both those links and leave comments for the bloggers. They are awesome for doing what they do for authors with little to no compensation for themselves. They deserve comment love, at the very least.

I’ve also put up a very short excerpt of ABDUCTED on Lilah Harding’s blog here. I am really looking forward to releasing this one...

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You’re FIRED: Empowerment

So I did something last night that felt pretty good. It was one of those things where you sit at the computer screen, compose a message, and then let your finger hover over the send button for minutes, perhaps hours, reading, re-reading, debating, editing, changing, second-guessing, and then… finally, you decide: What the hell…. and you send it. Well, I did that last night.

I logged into the online chart system that my doctor’s offices with UTMB uses to get appointments, cancel appointments, view test results, etc., and I cancelled my follow-up appointment with the “Dear Doctor” I wrote about in this blog post. Keeping in mind that I only have 500 characters to work with, this is what I wrote in my request to cancel that appointment:

“I have decided to seek anoth...

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Dear Doctor:

I came to you today to ask you for help. I have been very sick since I was hospitalized last year. Once all the critical, acute things were dealt with, my pulmonologist believed with all his heart that I had a sleep disorder of some sort. He sent me to a sleep lab in January and I was diagnosed with Obstructive Sleep Apnea. It was news to me, because I’ve never had problems with sleeping, don’t wake up gasping for breath, don’t stop breathing in the middle of my sleep (yes, I’ve been watched), don’t snore (yes, others who sleep with me will attest to this), don’t have daytime sleepiness, don’t have difficulty concentrating, don’t have any of the other symptoms that go along with sleep apnea.

In fact, the technician at the titration sleep study in March said I was having apnea episodes while awake… I find it hard to call something sleep apnea when it happens when I’m awake, but I mentioned this to you and you blew me off.

Anyway, I’ve known people who had sleep apnea: an ex boyfriend, my best friend, my daughter, my deceased stepfather. All of them, when treated for it, improved greatly. Quality of life was dramatically increased. Quality of sleep was dramatically increased. They felt better, slept better, looked better… all the way around, it was a wonderful thing. So okay, maybe I don’t have the same symptoms they do. Maybe my sleep apnea is less severe or something. So maybe this therapy will work for me too, and I just don’t know it. So I’ll give it a try. I mean, I didn’t like having to use oxygen when it was prescribed, but when I did use it, it made me feel better–lots better–so now I wear my cannula all the time, without any non-compliance, because I see how it improves the quality of my life.

But even when I did the titration study, the CPAP was a difficult fit for me...

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We All Bear Scars

The other day, I was washing the coffee pot in the kitchen. The top of the lid was white and it was stained a bit, so I took it off, turned it sideways, and was going to put it inside the carafe so I could fill lit with bleach and let it soak. I’ve done this dozens of times. For whatever reason, this time, the lid caught the side of the glass, and when I pushed down, it cracked the glass itself and, in part because I’m in the wheelchair at the sink, the angle at which I am doing this is changed some from standing, and my hand came down sideways on the broken glass. I have four cuts, not too deep but enough they hurt when I brush against them, one small puncture wound on the side of the hand, and then a large, deep laceration on the tip of my pointer finger.

It’s really bad. I should have had stitches or at least gotten it butterflied. You can, three days later, still see the bubbly flesh under it, the fatty tissue. It’s healing, but it’s not sealed yet. It’s bruised. I’m on blood thinners, so it took a bit to get it to stop bleeding, but when it did, it left it quite bruised and now it’s several shades of colors. It’s swollen. Worst of all, I manage to keep hitting it on things over and over and it freaking hurts.

Bad.

Like, I’m taking Lortab 10s, along with a couple...

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Doing Some Thinking

A few months ago, I ventured into the forums on a Pulmonary Arterial Hypertension (PAH) website. My first foray into the support group there brought me to a thread about a woman with severe and advanced PAH. She was on an IV pump, and the medication that’s used in that pump has a half life of about a minute or so, so coming off that medication can often mean death. It’s such a required part of her life, that if the IV has warnings on it for paramedics letting them know NOT to remove that IV and to start a new one before removing that one. There’s like a 2 minute window to get back on these meds. This woman had lived like this for years, and I came in to the forum at a time that she had just made the decision, with the help of her pastor and her husband and family, to stop her medication. Though no one said the words, basically, she was telling everyone she was ready to die.

I was newly diagn...

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Letter to a Friend

Look, we need to talk. I took in what happened the other day, when you looked in the mirror and said you hated yourself. Maybe you were only talking about the way you looked, I don’t know, but it sure felt a lot deeper than that when I heard it, the way I heard it. You really have to be careful with your words; they have power and energy and a vibrational resonance that you react to whether you realize that or not. It’s proven science, you know, so even when you say things like you’re joking, you know the words can still do damage.

I wouldn’t let someone else talk to you the way you talk to yourself. Why do you think I should let you get away with what I wouldn’t let someone else get away with?

So from this point forward, you are not allowed to call yourself ugly, stupid, or fat. You are not allowed in my presence to say that you’re unworthy, dumb, old or unlovable. If I won’t allow a stranger to say that to you, then you don’t get to say it to yourself either.

Because the truth is, you know it’s not true. You understand this at some deep level, I know, that we are all beautiful in our own way.

Yes, I know it’s hard right now...

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I am Afraid of Pain

There was an episode of HOUSE a while back in which he makes some comment about how pain makes you make bad choices and that fear of pain was worse than that. I nodded my head knowingly at the time, but I’m really beginning to understand this more than I would like. Pain doesn’t really seem to stop me. It’s the fear of pain that holds me back. When I’m sitting in my recliner, tapping away on the laptop, and I’m not really hurting, going along okay, and then I think about getting up or doing something, I know that doing it is going to hurt. Why? Because it always does hurt, always. Always.

I mean, I cannot stand up with out pain. Sometimes it’s mild pain but sometimes it’s excruciating. I never know for sure until I standup which it will be. Sometimes, moving around is okay and sometimes it’s horrendous. Again, never know until I do it. So there are days I sit in my chair and spend more time debating with myself than I do actually doing anything. I’ll need to pee, but I know getting up is going to hurt, so I sit in my chair for as long as I can, until my eyeballs are floating, hoping the urge will go away, but since take Lasix (a diuretic – you know, a water pill), I know it won’t go away, and in fact, I know it will just get worse, and the longer I wait, the worse it will get, so (taking a deep breath)… yeah.

It’s the same for food, water, drinks and other things I need, includin...

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Everything Looks Like a Nail

My primary pulmonologist is a sleep disorder specialist. He thinks I have a sleep disorder. This is sort of akin, to me, to my cardiologist thinking I have a heart. Or in other words, when all you have is a hammer, everything begins to look like a nail.

It’s not that I’m disagreeing with him about having a sleep disorder at all. It’s just, he thinks I have obstructive sleep apnea and I do not think I have obstructive sleep apnea. Again, though, I’m not saying I don’t have a sleep disorder. The problem is, OSA can be treated with a CPAP machine, but some of the other sleep disorders are actually worsened by a CPAP. So let’s look at some honest-to-goodness facts.

Sleep apnea can cause: snoring, waking up gasping for breath, sleep arousals, waking up unable to breathe or feeling like you’re suffocating, excessive daytime sleepiness, irritability, waking up feeling un-refreshed. It can cause some other things too, but I want to focus on these, because these are usually the symptoms that send a person to the doctor, either because they noticed it or their spouse or partner noticed it.

Now, let’s consider this: I have several ...

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