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New Hospital, New Clinic, New Outlook

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Hello world!

Braless, Barefoot, and Bare

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chair-1604416Over a decade and many more years ago, I was in an on again off again tumultuous relationship with a man, that I would now hardly call a relationship. At the time, he and I were driving in a truck from Dallas back to my home at the time, which was about a 6 hour drive. I was wearing sandals, so I kicked them off, curled my feet up under me, and then slipped my bra off while still wearing my shirt. You ladies know how to do that, right? Right. So anyway, I was just kicking in for being comfortable for the long trip. I slipped the bra into the side pocket of the truck, and I started to read a book I’d brought with me.

When we got to Weatherford, I told him I was hungry and asked if we could stop to get something to eat. He needed to fill up with gas, so we did that first, and while he was filling up, I searched for a place nearby to eat. This was before the days of smartphones and GPS being so popular, so I had to go into the station and ask about places to eat. They suggested a great place just down the street, so when he got back into the truck, I told him about it. We pulled up to the place, and I got ready to get out, slipped my shoes on, and reached for the door handle.

He stopped me and said, “I’m no going in there with you without your bra.” (more…)

The System Finally Broke Me

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I give up. I quit. I’m done. Why try? Why even fight the system? In the end, we always lose anyway, right? So why go through the aggravation to even bother? The difference is you either die broke and sick now or you die broke and sick a couple of years later… sigh.

I probably don’t really mean this. I’m probably just depressed and angry. I probably will keep fighting the system.

But today, right now, right in this moment, I’m done.

I’m so done.

I have only three days worth of medication left of the Lovenox injections. And I only have that much left because, depressed and feeling lousy, I went to be last night and forgot to take my injection at all yesterday. Otherwise, I’d only have two days left. (more…)

I Shouldn’t Watch Medical Dramas

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So I was going through my medical files, my records from the old hospital that I’m sending to the new doctor to evaluate to see if she will take me into her service. While going through them, I found some diagnoses that no one had ever told me. One of those diagnoses turned out to be something that is actually quite serious. We are absolutely confounded as to why we were never told about this, why no one ever mentioned it, why we were never given treatment options or even warned about this.

I never go to an appointment alone. I always take someone with me. There are just too many things to remember, questions to ask, comments made, etc., to go alone. Someone else should always be with you, especially if there’s going to be treatment plans discussed or bad news given. You don’t always think of the right questions to ask at the right time, or your brain goes numb and you don’t always hear everything.

But in this circumstance, no one EVER mentioned this to us. We find out about it two years later on a radiology report with a note called “incidental”. It was incidental, because the reason for the CT scan was to search for pulmonary embolisms–again–and this thing they found was not a pulmonary embolism.

They found a type of aneurism. A rare one, one that is very uncommon and almost always surgically treated. (more…)

Pop the Balloon

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One of the worst parts of CTEPH and CHF together is the swelling and fluid retention. The one single thing I can do that makes me feel better is to keep the fluid down. I do this by taking high-doses of diuretics and restricting my fluid t 1 1/2 to 2 liters of total fluid per day. I’m not 100% nitpicky about the amount of fluid–many days I go over, because I don’t always count broths and fluids in foods and such–but I try to keep it really close to that. Mostly, I try to make sure that more comes out than goes in–if ya know what I mean.

Being sick, you’ll learn quickly that talking about bodily fluids isn’t something to be ashamed of–it’s just a fact of life. We poop and we pee and we sweat and we bleed, and our doctors are quite interested in all those fluids. For me, keeping the output higher than the input is a must. It helps keep the fluid out of my abdomen (which is called ascites) and out of my feet and legs, which can increase my risk of DVT, which can lead to embolism, which is what caused the problems I have in the first place. My hematologist said that one more big blood clot could be it for me–the lungs just can’t handle any more. I’ve got plenty in there all calcified over, so I don’t need to add to them.

CHF, no matter what causes it, itself causes fluid production, which leads to fluid retention in the body. My feet and hands swell, my face swells around my chin and cheeks, my belly swells and the fluid backs up in my abdomen and that makes it hard to breathe. I also get fluid retention in and around the lungs. It’s kind of like having pneumonia, but instead of having the fluid in my lungs pushing out, it’s on the outside of my lungs pushing in–and breathing and oxygenation is tough when that happens. (more…)

PTSD and Me

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It’s a beautiful day in a suburban neighborhood.

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Three people are walking down three different, but essentially identical, streets on a sunny day in the suburbs. The sun is shining. The birds are singing. The trees are blowing in the light breeze. The flowers are blooming. Somewhere in the distance, a dog barks. A child’s giggles and squeaks of playground equipment can be heard. A lawnmower is running somewhere. By all accounts, it’s a glorious, beautiful day.

Yet, each person is going to have an extremely different perspective of their walk and will have a completely different feeling while walking, because: statistically speaking, each of these three people has a different probability of being blown up by a bomb while they walk down their street.

Let’s talk about PTSD.

(more…)

Ponder, Wonder, Worry, Wait

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I have some lab tests I’m supposed to get done. My doctor faxed the lab requests to Labcorp almost a month ago now. I’ve made three different appointments to go, and somehow, I’ve missed every one of them. They are testing me for paraneoplastic syndrome, as associated with a slow-growing type of cancer or tumor. I probably don’t have it. I’m sure that instead I simply have multiple other rare and unusual conditions, all rolled into one little old me. Even though this diagnosis would make total sense and make a lot of other things come together, certainly, I can’t have cancer.

And as long as I don’t ever get the test done, I’ll never have cancer, right? That’s how this works, right? If you don’t know what’s killing you, you simply don’t die. Right?

Well, it’s not true. I worked in the medical arena a few years in my past, and I know enough to know how important early intervention and diagnosis is for any condition, but particularly with cancer. So I know I should know better.

And yet.. I cancelled one appointment because I didn’t want to get out in the rain. I slept through another one. The other one, I just forgot about.

Yeah… not good, huh? (more…)

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