Category Health & Medical Tidbits

As I mentioned earlier, because of several different issues, the doctor said I am not eligible to even be referred for consideration to the San Diego specialty docs who do this surgery for the CTEPH that could save my life. They have referred a patient before. That’s good news. They basically said I’m not stable enough, and that they have to get me stable first. I have fluid overload still, have to get the fluid down, and I need to lose weight (which is increasingly hard to do when I can’t exercise at all), and the left-sided (which is rare in this case) heart failure has to be controlled completely, and a few other little things that have to be taken care of, before they’ll even evaluate me to see if I would benefit from the surgery.

FLUID RESTRICTION SUCKS

Just a little thought today: I sort of live in a wheelchair outside of the house. It’s taught me to look at things differently. Today, I asked Lynn to change parking spots, because there were two handicapped parking spots available, but only one was van accessible. I don’t use a van lift, so I asked her to park in the other one, so just in case someone with a van needed it, it was open. Yet, I see people all the time, without the parking stickers or placards zip into handicapped parking spots.

Another thing, since the breathing from the PH has hit, it physically hurts my chest to be around folks who are smoking–so when I go to the doctor, there’s often someone outside taking in a few puffs–that’s fine, if you smoke, but please, consider not doing it so close to the entrance of a building (some states have laws about that)–especially a doctor’s office. Smoke from cigarettes can flare problems for people like me, bad problems, so I have to sit in the car and wait until they move and finish their cigarette. Asthmatics, COPDers, babies, and more are affected by it–please, walk a few more steps to your car to smoke–your inconvenience is less than someone being physically assaulted–I know you would never intend to do that, but that is what it’s like.

Today, at lunch, I could not get my wheelchair into the bathroom, becau...

It was confirmed via phone call from my doctor last week that I am not currently eligible for the life-saving surgery in San Diego. In fact, I’m so not eligible for it, that my doctors didn’t even mention it to me. I’m the one who found it online and we asked them about it. They confirmed that my doctor knows those doctors by first name, and if I were stable, and didn’t have co-morbidities, they might refer me, and perhaps I can become eligible at a later date, but right now, the answer is no. And even if they can send me to San Diego later, there’s no guarantee then I’ll be eligible for the surgery, depending on where the clots are in the pulmonary artery and the lungs.

That’s like telling someone, We’re sorry, but you’re just going to have to die now.

But that’s not what I heard.

It sucks I’m not eligibl...

A couple of years ago, I wrote a blog post entitled “Too Stupid to Know Better”. To this day, it remains one of my more popular and frequently visited blog posts. It’s amazing some of the search terms used to get to it, but regardless, it’s a popular post. Don’t know why. While I suggest you take a moment to go read it–especially if there’s something you’ve been wanting to do but are holding back on it. The post, essentially, talks about how we talk ourselves into or out of things we want or need to do. Sometimes, knowing too much information stagnates us–we don’t move...

.. that you have a terminal illness? Why, you go out and buy a dress! No, really. I did buy a dress!

I finally broke down and bought myself the dress I’ve been salivating over for months now. You can see the picture of it right here, and it’s gorgeous and I’m going to feel gorgeous in it, and screw the cost–I’m worth it! Okay, I don’t usually indulge like that, but I did need a nice dress to wear to an event thingy, and this can be a tax deduction and…. I’m justifying, but still, isn’t it gorgeous?

What Terminal Illness Means

As for the terminal illness part, I’ve learned some m...

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 ...

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...

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...

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...

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...