Category Archives: Health

The end of an era

I often get questions via email or social media about what I’m working on, if there are going to be any more Blood Lines books, etc.

Sadly, the answer to the above is pretty much no.

In 2011, I was diagnosed with Sarcoidosis, an autoimmune disease that can affect multiple parts of your body. Mine was primarily in the lungs, which meant that although I was breathing okay, the oxygen was not being transmitted out of my lungs properly. The sarcoid also affected my eyes, causing severe inflammation in both of them, raising the pressure to dangerous levels.

I was constantly exhausted and in pain. Turns out, on top of everything else, I had fibromyalgia, which often appears in connection with sarcoid and/or other autoimmune issues.

Will I get better? No, not really. The sarcoid is in remission now, and has been for a couple of years and my eye pressure is being controlled and monitored carefully. The rest of my immune system is still wonky and new stuff seems to crop up every year – all autoimmune related. I get sick with communicable diseases a lot easier these days. I carefully husband my time, trying to make sure I can do the things I need to.

Bottom line: I am in autoimmune purgatory and most days, it takes all my energy to go to work and complete my tasks there. Writing is just not in the cards anymore, as exhaustion has taken over my life. It’s sad, but it’s reality and it’s taken me a couple of years to come to grips with this.

I’m not blogging anymore, but you can definitely find me on Facebook and Twitter.

Thanks to everyone for all your support!

5 things make a post: the I worked on Inauguration Day edition

1. Am very glad I remembered to fill up the car tonight as tomorrow’s high is slated to be in the mid-20s. (BRRRRrrr)

2. I LOVE my eye doc. She gives me free samples of very expensive eye drops that I need to have.

3. Quarterly eye checkup was awesome. No inflammation. Pressure normal.

4. Now I need to heat up dinner and watch last week’s Scandal and last night’s Downton Abbey.

5. And by heat up, I mean cook the frozen DiGiornio cheese pizza.

 

(I’m trying out an experiment. Since I kept having writer’s block or ennui or whatever, I’m going to start posting stuff here that I’ve posted on Facebook. If you follow me on both, you may want to unfollow on one of them.)

Learning To Cope

Mirage Quattro It’s Monday again – a week since I last blogged. So much for the every single day goal. Oh well.

This past week has been a lesson in learning to cope. Small things, really, but adding up to one tired me. I’ve been having issues with the CPAP mask. If it sits properly on my face, it’s brilliant. I sleep well. I breathe well. All is good. Only, it doesn’t sit properly on my face, it slides. Up, down, whichever direction doesn’t matter. Only a tiny bit, but that bit is enough to break the mask seal and cause eye leaks. (Air blowing up into my eyes).

On Thursday morning, I went in for my 2-week check-in with the sleep tech. She saw the problem immediately. The mask is a teensy bit too small. The medium size of the same mask is too big. (They measure from bridge of nose to mid-chin). When I described the problem, she noticed that even just sitting there in her office, the mask began to slide. Solution: try other kinds.

After some trial-and-error, we settled on the Mirage Quattro, an older style mask with a forehead band. It looks more uncomfortable than the Quattro FX (the mask I have), but it feels a ton better, more secure. Sadly, as with all this kind of equipment, it has to be ordered via the durable medical equipment company, who will then provide it to me. I’m hoping they call me today.

In the meantime, I’m still using the machine & the FX mask and spend a great deal of time fussing with it. I discovered that I can (and do!) adjust it in my sleep. It becomes part of whatever dream I’m having. Definitely weird.

I’m also hoping that once this mask situation gets settled, I’ll have better sleep–e.g., less fraught with worry about the leaks.

Coping with this type of situation is tougher than I thought. It’s the same realization as being diagnosed with sarcoid and trying to wrap my head around the understanding that this is forever. It’s not going to be cured. It’s not going away. I will always have to use a CPAP…every single night. Sure, I know intellectually that it will become force of habit, just like I got used to putting my night guard in my mouth when I go to bed. But now, it’s still new, different, odd. Just another thing that makes me feel not normal.

As I was watching episodes of Private Practice via streaming, I began to notice how, in this show, as with most others, though we see patients coming into the picture with illnesses, conditions – there’s no reflection of regular characters having something chronic – sure, Addison has fertility issues, but that doesn’t impact her day-to-day functioning. Gabriel Fife was in a wheelchair – but you never learned why. Plus, he wasn’t a regular character. When these people go to bed at night, they don’t put in a night guard. They don’t use a CPAP. Heck, not a one of them even take medication on a regular basis. I love the show, but as with most TV, even though they try to bring in the “different”, the characters we see in each episode are pretty much perfect physically.

I get it, I do. The prevailing opinion is that no one wants to watch people who aren’t pretty and physically perfect. Only thing is, that definition varies from person to person. Plus, wouldn’t it be nice for once to see someone who does have a chronic condition that doesn’t result in being in a wheelchair? Something that nearly 1 in 15 Americans suffer from? It doesn’t have to be the focus of a “very special” episode–how about just showing us one character that has to hook up to a CPAP when they go to bed? To deal with it as just a regular part of life?

Frankly, I think I (and others) might learn to deal a little easier if we could see those like us reflected in our popular culture.

What’s your take?

A day without sunshine…

…is like today.

Raindrops Woke up to strong winds and heavy rain pounding into the window above my head. I wanted nothing more than to roll over and try to get some more sleep, but alas, I have things to do. Mostly, though, I have people coming. Grocery delivery scheduled between 9 and 11, then between 11 and 1 – oh joy of joys, the medical equipment guy is coming with my CPAP machine!!

I know it’s going to be an adjustment to learn to sleep with a mask on my face, but trumping that x 1000 is the fact that I’m going to be able to get REAL sleep. Last week, when I went to the sleep doc, he informed me that my sleep study showed that I’d stopped breathing 70 times in an hour. Only for a second or so, but SEVENTY times!! Basically, that means I never actually get all four stages of sleep, so I’m never fully rested.

I can vouch for that this morning, as I feel like a truck ran me over. Exhausted, though I went to bed at 10 and fell asleep rather quickly.

CAN’T WAIT to have my machine!

It is rather frightening, too, to know that I’ve had this for who knows how long. My sister and BIL both have sleep apnea. I will bet anything my late father did, too. He’d often fall asleep at the movie theatre or just sitting in a chair, and wake up choking, gasping. Turns out, tendency toward this is genetic. Whee?

I’m just glad that these days, it’s more readily recognized and treatable.

Speaking of machinery, my new at-home blood pressure monitor arrived. Easy-peasy digital machine. Happy to report that today’s BP is 114/85. I’ll be taking it first thing in the morning so as to keep a consistent log.

Since it’s so gloomy today, I’m probably going to curl up with a good book or movie while I wait for people to arrive. I’d be recording, but I’ve sent some files off too ACX for a QA test, so I need to wait until they get back to me. (I think waiting might be the operative word for the day!)

What’s your favorite rainy day book or movie?

Still ticking…

I’m still here. My goal to do a blogpost daily got derailed by a digestive system upset thanks to new/old meds (all of which list various digestive issues as side-effects). I’ve spent the last several days just feeling rather miserable and doing a lot of sleeping.

A bit better today, but still rather out of whack, so I’m working at the job from home – thank goodness I can do that.

Hoping that this will clear up.

So, what’s new in your world? or the world–now that I think on it, I’ve been offline and have no clue what’s been happening.

Is it Monday yet?

Oh, yeah, guess it is.

Hope painting Woke up freezing this a.m. – I’d kicked off most of the covers during the night. Brrrrrr, chilly! It’s in the 20s this a.m. (Fahrenheit), winter has definitely settled in for a spell. I’m fine with that as I can wear my warm hoodies from Junonia. It’s one of my favorite online stores, since they have active wear for plus size women. Not that I’m all that active these days, but it’s comfy and well-made, even if a bit on the pricey side.

I did a lot of sleeping over the weekend, making up for lost time, no doubt. Doc gave me a muscle relaxant to take at night, in hopes of kicking the pain cycle. My back muscles have been tending to spasm horribly. I’ve got a mild painkiller for daytime (which doesn’t make me sleepy or woozy), so whee? I truly hate being on so many meds.

Sliding back into angry mode about this whole disease business. It’s making me crazy. Now I’ve got to see a cardiologist to test for/rule out (hopefully!) pulmonary hypertension. It’s basically high blood pressure in the lungs, not the heart. Although my lung function tests indicated that my lung capacity is up (by a lot), I still am getting shortness of breath when I walk/do stuff. 🙁

This is TOUGH to deal with.

I guess I wanted a magic pill. The prednisone is obviously working (e.g., the increased lung test), but my symptoms aren’t abating. All this equals an unhappy me. I’ve gone from happy, healthy Maria to having to see multiple doctors Maria. Bah.

Trying to take this one slow step at a time, to be zen about it. I know I’m doing everything I can on my part, sometimes though, one’s body just doesn’t respond the way one wants. That’s probably the hardest pill to swallow.

I’ll get over it. I know I will, it’s just that for right now, this moment, I’m a bit disheartened.

Arrogance of the Healthy: Lessons Learned

I used to be one of those people. You know, healthy. And arrogant about it.

Yeah, I’ve always been “a big girl” (aka, fat), but I was the “good” kind: healthy (great blood pressure, cholesterol, etc), if not obsessively active, I wasn’t a great lump of lumphood – I could easily walk for a long time without getting tired. I had tons of energy. I was strong.

Did I say arrogant? Oh yeah, baby. Totally. I didn’t understand why everyone couldn’t just get up from the couch and move, dance, walk. If I could, they most certainly could.

Pills And then, it struck. Chronic illness. Oh, not to me, not yet. To my mom (osteoarthritis) first. She went from a woman who loved the outdoors & activity to barely being able to walk 10 feet without stopping. Two bionic knees later, she’s active!woman – easy peasy fix, right? (yes, I’m being sarcastic with a dose of self-stupidity).

Then, a close friend went from being able to (albeit slowly) walk with me and manage the ridiculous amount of walking & movement required at conventions to barely being able to get from the hotel bed to the bathroom without stopping due to back pain and other chronic issues. Over the more than ten years I’ve known her, I watched her mobility disintegrate. She rides a scooter now.

Was I cured of my arrogance yet? Nope, not completely. I had yet to walk in their shoes.

You see, I’m one of those folks that learn first by watching, then by doing. Evidently, that aspect of my being had to come into play with health, as well.

A few years ago, the doing part of my learning began. I suddenly started to lose breath when I walked long distances. My brain chalked it up to a more sedentary life. I was working full time plus writing. Not getting out as much. I was getting fatter (I really wasn’t). I was getting older (well, yeah).

Then I developed some issues, all of which I chalked up to perimenopause. Aha! That was it. Only temporary, I reasoned. It’ll soon be over.

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