This and This and That

Greetings, friends!  I know I’ve been waning on my blogging duties lately, and that disappoints me because I was just starting to get to all the art projects I’ve been working on that I wanted to share with you.  Buuuut… I’m still navigating the learning curve with this Lupus diagnosis, and just when I thought I’d be in and out of a quick flare, I got a bad sinus and upper respiratory infection, I injured my knee in an apparent sleeping accident (another fine benefit of Lupus), and then another flare followed.  So, this…

…is the second Medrol (steroid) pack I’ve had to take in the past four weeks.

…is the new (and grossly disgusting!) homeopathic turmeric milk drink I’ve started taking daily to attempt to help with inflammation.

…is the remnants of a cute little egg I found on my doorstep.  (Any ideas on what hatched from this would be greatly appreciated.  My first guess was a ringneck snake because we have a lot of those here, but after Googling it, this egg is too round and large.)

And then this…

…is when the shingles for my new roof were delivered this week.  (How cool is that conveyor belt truck?)

…is the roofing crew installing my new roof this morning.  (Actually, this is what my roof looks like naked!)

…is the color scheme that Sister Michelle, Son Jeremy, and I will be painting (or attempting to paint) the exterior of our house this weekend (though with my current state of health and the medical recommendation that I avoid the sun, I believe my contributions may be more in the nature of a supervisory role).  The house will be the Mined Coal grey, the trim will be Bakery Box white, and the accent trim will be Little Black Dress (to match the new charcoal roof).  And once that’s done, I’ll be building two gable pediments which will be white.  Since we are using an airless sprayer for the first time, we’ve all also been busy watching YouTube and See Jane Drill tutorials on how not to end up wasting 15+ gallons of paint.

So, since I’m not able to do the regular blog-thing again quite yet (but hopefully after the house is painted and things are a little more back to normal), I just wanted to pop in today and share some photos I took in Washington D.C. last year, and a couple from other places, and also say that…

…I hope each of you have a Happy, healthy, and SAFE Memorial Day weekend!

…I hope you all remember the purpose for Memorial Day is to honor America’s servicemen and servicewomen who paid the ultimate sacrifice to protect our nation’s values (and that whether you agree with each and every one of those values or not, you at least appreciate the sacrifice that was made when these lives were lost…I already know you do).

…you all (or at least all the Americans) remember that on Monday at 3:00 p.m. in whatever time zone you are in, that is the time for the one-minute moment of silence.  (In case you have never heard of this, in December of 2000, Congress passed the “National Moment of Remembrance Act” which asks Americans, wherever in the world they may be at 3:00 p.m. local time on Memorial Day, to pause for a duration of one minute to remember those who have died in military service to the United States.)

Finally, thank you to all the amazing heroes that serve or have served in our nation’s military.  And thank you to all the front-line workers, essential workers, and to those who are helping keep us safe during this current Covid-19 crisis.

Let’s talk:  What are your plans this weekend?  Have you ever painted the outside of a house with a sprayer?  Do you think we’ll do a great job or have the biggest headache of our lives in this attempt?  (I’m sure it will be one extreme or the other, with no in between.)  Did you know about the 3:00 national moment of silence for Memorial Day?

My Skeleton Hurts!

Hello again, dear friends.  When I made my Bloggyville comeback appearance last week, I tried to be upbeat and lighthearted.  It’s never easy leaving a place you love for a while then returning later only to be greeted by a lot of new faces who look right through you because you’re a stranger and not seeing some of the familiar old faces you used to love.  The same is true of taking a lengthy break from the blog as I did.

The fact is, while I often see things that either make me think they will be the subject of my next short story or the subject of my next blog post, the life I was living didn’t allow my body to go much beyond just having the thought to do such tasks.  It’s been quite a roller-coaster ride since I was diagnosed with Lupus in 2016, not to mention the couple of years before that with the host of medical problems I was experiencing and getting no answers from the numerous doctors I saw.

I thought that once I was diagnosed and finally had a name for what ailed me, things would start getting better.  That was not the case.  Keep in mind that I’m also dealing with Gastroparesis caused by my Lupus, so that means I still vomit more days than not, and I’m very limited in what I get to eat and keep.  My family has started saying, “Are you going to eat that meal or just rent it for a while?”  Gastroparesis typically occurs in people with diabetes, and what happens is the food they eat does not digest past the stomach, and since it doesn’t move along as it’s supposed to, it can cause their blood sugar to spike even hours after having eaten their last meal.  In my case, my gut gets so inflamed, the food just sits there until it hurts so bad I have to get rid of it in the only way I know how.  Which is a visit to hug the porcelain god.

I took steroids daily for more than 2 years to try to get everything under control, not to mention chemo for 4 months.  Because of all the poison I was eating in the form of “medicine,” my skin thinned to the point I can see my veins, and just scratching an itch can make me bleed or have a “hickey” that lasts for weeks.  The slightest bump into something can make me get a large, ugly, violet bruise.  All the meds made me lose even more of my already-falling-out hair along with other unpleasant side-effects.

But my body was still in such excruciating pain, I saw no quality of life.

And then my rheumatologist announced she was leaving her practice to move to another city.  Fast forward a few months until I got in to see the new rheumatologist who took her place.  The new doctor’s husband is diabetic and has Gastroparesis.  What this meant for me is that (even though this G.I. affliction was out of her scope of treatment) I finally had a doctor who actually understood at least part of what ailed me.

But worse than tossing my cookies (oh, how I wish I could really have cookies!) 5 or 6 times a week, I just hurt!  Everywhere!  I typically have a pretty high pain tolerance, but this was too much to bear.  I mean, it was like this (and this is factual… not embellished for comic relief):  My 10-pound cat would try to sit on my lap, and I’d scream in agony because it was as if my femurs were being broken in half.  I’d knock on my son’s door to call him to dinner and I’d recoil because it felt as if I’d dislocated every knuckle.  I’d roll over in my sleep and wake up crying out because it was as if my ribs were cracked.  I’d sit on a kitchen chair and grimace because it felt as if my spine and my tailbone had been fractured.  In reality, my problem was this: MY SKELETON HURT!  Every. Single. Bone.  I had no better way to describe it.

My new rheumatologist, because she understood better than most about Gastroparesis, realized that I was losing nutrients during my frequent time on my knees, and as it turned out, my Vitamin D was acutely deficient.  (Your levels are supposed to be between 30 and 100 and are optimal between 40 and 80. Mine was 9!)  And when your Vitamin D is low, you don’t absorb the calcium you also need to help keep your bones healthy and strong.  Turns out that the steroids and chemo I took are known to deplete Vitamin D, the anti-malarial I still take daily to preserve my organs is known to deplete Vitamin D, and my unwilling pastime of barfiness also depletes the Vitamin D. Additionally, I haven’t eaten any of the foods rich in Vitamin D (milk, fish, eggs) in more than a year because they make me puke.  And because of the Lupus, I can’t get out in the sun which is another source of Vitamin D.

(Side note: when I had the iron and B-12 anemia, that caused pain and total exhaustion, but that pain was nothing compared to this.)

So, I was put on a prescription level of D3…  If you take an over-the-counter supplement, you will either take 7,000 or 14,000 IU’s in a week’s time.  I was prescribed 200,000 IU’s a week for the first four months, and now take 100,000 IU’s a week for maintenance.  And I finally feel so much better!  Oh, I do still get the aches and pains from Lupus, but those are nothing compared to the deep bone pain in every bone from the low vitamin supply.

I’m also still dealing with the puking, but at least now when I lose my meal, I don’t feel as if my kneecaps are being bombarded with nun chucks as I kneel to do so.  So, half of my battle is won, and I can’t tell you what a relief it is not to live with that kind or that level of pain in literally every bone in my body.

While my experience has soured me on the current state of America’s healthcare system and the bureaucratic “rules” that go along with it (because no other doctor I saw went out of their way to even recommend a simple, inexpensive blood test that literally could have saved me from months of torture), it also woke me to the idea that there must be an inordinate number of people in third-world countries (and likely even closer to home) who don’t get enough to eat or at least quality nutrition, and they must live as I did every day – with their skeletons hurting.  And that thought hurts my heart.

Let’s chat:  Have you ever experienced a broken or fractured bone?  Have you ever experienced a severe vitamin deficiency?  Did you ever realize that a mere missing vitamin could cause such severe pain?  When you are diagnosed with something out of the ordinary, do your thoughts ever turn to how someone else in the world might be dealing with a similar condition but for a different reason?

 

#LupusAwareness #GastroparesisAwareness

Snakes Alive!

Greetings, friends.  Happy Throwback Thursday!  As promised, I’m back to share another of my life’s crazy adventures that happened during my time away (which, since I’ve been off the grid a while, I guess technically counts as a Throwback).  Do you remember the movie “Snakes on a Plane?”  Well, my story’s title would be better suited as “Snakes in a Drain… and Frogs in a Toilet.”

Sister Michelle, Son Jeremy, and I purchased a house in mid-2017.  It’s a 4/3, so we each have our own bathroom.  It’s a wonderful house in a great neighborhood, but the previous owners didn’t necessarily do all the upkeep required, so we’ve been running into several problems that we’ve had to fix right away with little notice.  That being said, when we encounter another unexpected issue, we just kind of palm smack our foreheads and shrug our shoulders, because from what all we’ve already encountered, we know we shouldn’t be surprised.  When we moved in, one of the first things I did was replace all the weatherstripping around every door because for some reason, they all looked like a dog had teethed on them!

My bedroom and bathroom are an en suite, so they have a door between them and both also have doors that lead outside to the pool.  My rooms were also added on ten years later than the rest of the house was built, so we often find that certain things were constructed differently than the rest of the house.

Now, keep in mind that I live in The Swamp Florida, and in this humid subtropical environment, we have a lot of reptiles, amphibians, and just creepy, scaly, slimy things that are supposed to live outside who often try to get inside.  In my house, I’m the resident lizard / frog / *snake / and other creepy thing catcher, and when we get one of these critters where it doesn’t belong, I usually try to catch the displaced visitor and relocate them back outside.  (*I don’t mind snakes if I know what kind they are, if they are babies, or if they are someone’s pet.  Otherwise, no I don’t go out of my way to catch adult snakes, I turn and run like any other terrified red-blooded lady.  Also, I won’t touch mice or rats unless they’re someone’s pet.)

So, one night, while the rest of the house was asleep, I was up late reading.  When I was ready to get to sleep, I made a last trip to the restroom and as soon as I flipped on the light, I spotted a sizeable (about a third the size of my fist) frog sitting on the toilet seat!  Figuring it squeezed in under the door from the pool area, I tried to catch it, but it kept jumping every time I got close.  I opened the outside door, hoping I could just chase it out, but the little booger jumped into the toilet!  It was late, I was tired, and I didn’t feel like chasing it around any longer, so I murdered flushed it!  I felt bad that things turned out that way, but I figured it would survive and end up somewhere in the sewer where it could find its way to freedom.

The incident all but forgotten, it was about a week later when I was dealing with a particularly painful Lupus flare and I made a late-night trip to the restroom.  If I’ve already been asleep, I don’t usually turn on the light, but I heard a noise, and something told me to flip the switch.  There was another frog perched on the toilet seat, and this one was larger than my comfort zone to catch.  (He was about three-fourths the size of my fist.)  I was exhausted, in pain, and in no mood to break my neck trying to play hero.  I opened the back door and intended to either catch it on the first try or just quickly shoo it outside and get back to bed.  As I went to grab it, he jumped straight into the hole at the bottom of the toilet!  So, with no remorse this time, I flushed it.

The next morning, I realized that there was a pattern going on here that I didn’t particularly care for, so I Googled “frogs coming up out of my toilet” to see if indeed that may have been what happened.  Since I had recently replaced the weatherstripping, I found it hard to believe that two sizable frogs might be able to get inside through my door.  One might be a fluke, but two in a week’s time was had to swallow.  What I found on Google was that my late-night visitors did not likely come up thought my toilet from the sewer, but that they came down through my toilet from the roof!  Yes, apparently, those aluminum pipes that stick out of the roof on most houses have a purpose:  They are gateways for amphibians to get into your house to regulate air pressure in the house’s pipes.  Who knew?  They suggested that I cover the opening with a piece of something called a “hardware cloth” which isn’t a cloth at all, but is a wire mesh thing.  I went out that afternoon and bought some, and now, several months later, I’m just waiting for my son to install it for me.  But I guess just having it on hand did the trick, because after that, no more frogs.

Fast forward a few weeks.  My lawn service did something that broke open a large piece of PVC pipe in my yard, right outside my bathroom window.  They told me right away and said they would be back to fix it later that week.  As promised, they were back within a few days and fixed it as good as new.  No problem.  Or so I thought.

A few more weeks passed, and again, I was dealing with the Lupus flare from hell, so I didn’t feel like even combing my hair, much less playing critter whisperer.  I was using the restroom one evening, when I happened to notice a black hair tie on the floor by the sink.  I knew if I didn’t pick it up, one of my cats would end up trying to eat it.  But I hurt too much to bend over or kneel down.  So, as I washed my hands, I attempted to pick up the hair band with my toe.  And then it moved.  And then I kicked, and the hair tie was flung across the room and started flopping around.    And then I screamed like a little girl.  And then Michelle and Jeremy came running.  And then the hair tie started sidewinding.  And then Michelle and Jeremy screamed.  While in hindsight, I realize it was just a baby black racer snake, at the time, it was not where it belonged, and the shock of the hair tie coming to life and slithering around in my bathroom when I didn’t feel well was too much to handle.  So, without thinking, I bent down, grabbed it, flung it into the toilet, and flushed!

(In retrospect, I think it looks like I probably spend a lot more time in the bathroom than I actually do!)  I didn’t immediately think of the previously open hole in the PVC pipe, but I did reprimand Jeremy for not getting around to putting that hardware cloth up yet (though the large holes in the hardware cloth mesh wouldn’t have likely prevented that small of a snake from coming in anyway).  I figured my newest visitor must have been blown up on the roof by the wind.

All was forgotten until a few days later when I was cleaning the kitchen.  Now, of course we have a dishwasher, but when there aren’t many dishes, I prefer to just hand wash them in the right sink and let them dry in the left sink.  I put away the clean dishes, removed the dish drainer, and scrubbed the sinks.  Then I popped out the left side drain strainer to wash it, and that’s when I noticed another baby snake stuck to it!  I gasped shrieked and tossed it into the right sink where it did this creepy sidewindery thing, and before I could think any calm thoughts, I turned on the water and washed it down the garbage disposal!  And then chopped it up in the disposal for a good 40 seconds.

I felt bad that I overreacted and didn’t try to save it, but by then, I was really starting to get skeeved out by all the vermin attempting to share my home!  I immediately went to Google and identified the snake, and that’s when I learned that black racers lay around 20 eggs at a time.  I realized then that the mama must have found her way into my broken PVC pipe and that I could soon expect about 18 more visitors!

I called my plumber and told him snakes were coming out from my drain, and he said that was pretty much impossible.  Then I explained about the broken PVC pipe and that I figured on seeing 18 more of them, and that’s when he told me my best bet was to get a shotgun or learn how to run fast.  I told him I’m a Democrat, so I don’t do guns, and that with my Lupus being hot, I wasn’t running anywhere quickly.  So, he wished me good luck, and I was on my own again.  I ended up boiling several pots of water and pouring them down each sink and shower drain, then I loaded a heaping amount of vinegar and baking soda down each drain, then, for good measure, I poured a good amount of lye from my soap-making business down each drain.  (I believe I can now win the Cleanest Drains in the Neighborhood Award.)

Thankfully, since then, other than the occasional lizard, salamander, or tree frog that sneaks in through the front door sometimes, we haven’t had any more surprise visitors, though I do expect PETA will be giving me a call soon and revoking my request for membership.

Let’s talk:  What kind of wildlife do you encounter inside your house?  When that happens, do you catch it and take it back outside, kill it immediately with no regrets, or scream and run?  Did you know that the toilet plumbing vents out the roof of your house?

 

#LupusAwareness

I Survived the Medical Medieval Torture Chamber!

Greetings, friends!  Here’s to a (belated) Happy New Year in 2020 and (very belated) hopes that your 2019 was a good one.  I’m afraid I’ve been off the grid a lot longer than I intended.  During my absence from Bloggyville, I’ve been dealing with various aspects of life including more health (Lupus and Gastroparesis) complications, several deaths of various friends and family members, and emergency house repairs (and appliance replacements).  During my time away, besides the day job, I’ve also opened a homemade soap store, written two new manuscripts, created more art for the house, updated some backdoor stuff on my blog, and otherwise kept myself busy with reading and other artsy projects which I’ll elaborate on in a future post.

However, in the interest of not going all over the map in a single post, today I would like to share the details of just one of my recent adventures.  (Those of you who have been with me a while know I have the strangest things happen to me and how I like to “at least get a funny story” out of the ordeal.)  WARNING: If you are reading this in a public area, be on notice that this will likely make you laugh out loud.  (At least it hasn’t failed to make any of my personal audiences snort with amusement, so if you’re not laughing by the time you reach the end, you’re taking it way too seriously.)  [Also, apologies in advance to the men who may find this a little too personal – I know the ladies will completely “get it.”]

Several months ago, I started experiencing a pain under my left arm.  I figured it was a swollen lymph node, and that it would probably go away sooner than later.  By the time I next saw my rheumatologist for my Lupus, it was still sore and had grown in size, so I told my doctor that it felt like a doorknob in my armpit.  (Of course, I meant in reference to size – not an actual doorknob.)  So, you can probably already guess that she sent me for a mammogram.

Meanwhile, my sister, Michelle, was having mammary issues of her own and had to get a breast biopsy.  After my mammogram, they found something suspicious, so I, too, was scheduled for a biopsy.  (It may be a good time to note that Michelle and I go to different medical clinics, so at no time did we have any of the same doctors.)  It was around this same time that I was also dealing with an intense amount of shoulder pain from my Lupus.  I regularly get steroid shots in each shoulder, but I can only get them four times per year, and it was too soon to get new injections.  After Michelle’s biopsy, she came home and told me exactly what to expect:  She said they had her lie on her side with one arm raised over her head.  Then they injected her with a local anesthetic, made a small incision, removed several pieces of tissue, inserted a titanium clip inside to know where the tissue was taken, taped up the incision, then – and here comes the bad part – did another mammogram to make sure the clip was in place.

Ladies, even if you’ve never had a breast biopsy, you’re still probably cringing by now, just imagining the pain of a mammogram following an incision and the digging around inside to collect tissue specimens.  Men, if you don’t believe us, go out to the tool bench, put your junk in a vice, then close it all the way.  Wait!  I forgot the part where before you start, you should raise the vice to about six inches higher than your junk will reach, mount it on the wall, then proceed to insert your junk and close the vice.  That’s how a mammogram works… You have to reach around and hold a handle at the back of the machine that’s about three inches past your fingertips, and then they clamp your puppy in until it’s flatter than a pancake and raise the machine until you’re standing on your tippy-toes, and just when you think it can’t get any worse, they raise the machine once more and tell you to hold your breath while they get the first image.  Then after they get the image, just when you think sweet relief might be in your future, they – while keeping your boob smashed securely – rotate the machine sideways to the point that you think it might just rip your breast from your torso.  And then they do the other side.

So, Michelle’s report that I could look forward to this after the actual procedure didn’t give me much hope that it would be a pleasant experience.  However, the part that actually seemed more excruciating to me was that I would have to lie still with my arm raised over my head for half an hour.  (With my shoulders the way they were, I could barely raise my arms for the time it took to brush my own hair, much less for an extended period like that.)

A few days later, I was all smiles and bravado as I walked into the women’s clinic.  They offered me counselling before-hand, but I declined, feeling fully knowledgeable of what I could expect in my procedure.  I changed into a paper gown and wrapped a sheet around me as I waited to be called to the surgical area.  As I followed the nurse, a door opened and I saw a well-lit room with a comfortable-enough looking bed and a tray of surgical tools.  And then we kept walking.  We passed a couple of more similar rooms and then she escorted me into a large, dark room with a table with a hole in it and some steps leading up to it, that can best be described as some medieval type of torture chamber device.  (Seriously, in retrospect, I would have rather been hit in the head with one of those sticks with the spiky ball at the end of a chain!)  There was a huge scary-looking machine that put out this high-pitched hum, and nothing of comfort in the room except a boring painting of a farm on the wall near the table.

“Okay, climb on up there, and lie on your stomach.  Place your left breast in the hole and raise both arms over your head,” the nurse instructed.

“Wait, what?”  This was not what I had envisioned.

As I climbed up the steps and got situated on the table with my left puppy in the hole, I was instructed to look to the right and place both arms over my head.  So, there I was, staring at my own shoulder and the dumb farm painting and feeling very much like Ol’ Bessie there in the barn being hooked up to a milking machine, when all of a sudden, this clamp thing closed on my free-hanging boob and tightened.  A lot.  And then it tightened some more.  And some more.  And then, I’m not sure, but I think it twisted the darn thing in a complete circle.  Or two.  And that was before any local anesthetic!

And then the nurse raised the table.  By the sheer force of the clamp, my entire upper body was glued to the table.  Seriously.  If I’d have sneezed, I think I would have literally ripped my nipple off.  As the table rose, I felt very much like the unwilling volunteer of a creepy magician’s act.  The stupid farm sank down below my line of vision, and I could see where the wall met the ceiling.  And out of the corner of my eye, I could make out what looked to be a trapezoidal lighted thing that I could only imagine was some sort of FIRE indicator.

“Okay, you’re doing great.  Now, let me go get the doctor,” the nurse said.

You mean the doctor isn’t even here yet?  I was ready to be done, and the doctor was, as it turned out, busy and would be there in a few minutes!   The nurse left again after she told me of the doctor’s delay, and all I could think was: If the building catches on fire, I’m screwed!  Seriously.  I imagined how many different ways things could play out, and in every scenario, I was dead and the medical examiner and his buddies were laughing at the corpse with one extremely long hooter!  By the time I imagined being taxidermized for a freak show and having people line up to take selfies with the Amazing Long Booby Lady, the doctor came into the room.  Of course, it could have been the janitor for all I knew, because I was pinned in place staring at the wall.

At first, no one said a word, and then I felt the machine tighten around my breast, and I think a little of my intestines got twisted up in there, because at that point, I could feel the clamp pinch all the way down to my toes.  Then someone said something.  But not to me.  Turns out there were several men and a couple of women down there hanging around under my aching breast.  I think they were playing jump rope with it or something because they sounded as if they were having a fine time chatting among themselves; meanwhile no one said a word to me about anything that was going on.  The good news was by this time, my sore shoulders were the last thing on my mind.

About 9 hours later, they finished collecting all the samples they needed, and the nurse was left alone with me.  She said as soon as they checked the samples on an x-ray or some other machine, they would be able to unclamp me and let me down.  I was certain it was a little after midnight when she let me down and released my three-foot long breast from its prison, and that’s when I got to see the clock and only 40 minutes had passed.  She had to tape and bandage my poor stretchy, black and blue booby, and then I got to sling it over my shoulder and go get the afore-dreaded mammogram to check for the titanium clip.  Of course, by this time, that mammogram was nothing compared to what I’d just been through, so I didn’t complain.

To conclude, both Sister Michelle and I ended up with negative test results, so it’ll be another few months before either of us have to endure that kind of procedure torture again.  I’m still attempting to convince my sister to go see my doctor next time [insert wicked laugh track here], but she’s getting even with me by goading me to “tell your stretchy-booby story again” each time we encounter someone else who hasn’t yet heard it. (So much for my own modesty.)  At any rate, I’ve got a lot of other (less personal) stories to share, so I’ll (really) be back soon.

Let’s talk:  Have you ever injured your shoulder so that you couldn’t lift your arm?  Have you ever been pinned in one place for more than a half-hour?  Have you ever seen a modern medieval torture device?  (Wait, maybe I don’t want to know the answer to that one.)  

P.S. Even though I am making light of my experience with a life-saving diagnostic, I am not making light of the diagnostic test itself.  I’m fully aware of the seriousness of breast cancer… One of the people I mentioned who was lost in my absence was Sister Michelle’s sister who, after years of fighting, lost her battle to triple negative metastatic breast cancer, leaving a husband, two children, and a family who loved her in its wake.  

 

#StereotacticBreastBiopsy #LupusComplications #Life

Checking In

Greetings, friends!

I hope and trust you are all doing well.  It’s been a while since I last blogged, and at the time, I’d been discussing some of my life’s new changes.  One of the changes since that time was that I started taking chemo pills for my Lupus, and they made me so sick and sore!  I was on them for sixteen weeks, and they were causing me so much pain, I couldn’t sleep, couldn’t walk well, and it was excruciating to use my hands.  About six weeks in, my rheumatologist actually increased the dosage because she thought the Lupus was the problem, not the medicine.  But I became much worse over the next ten weeks, so she took me off everything except the drug that protects my organs, and I got Cortisone shots in my shoulders and wrists.  Fast forward a week, and I’m currently feeling the best I’ve felt in the two years since I was diagnosed!  There’s still a bit of pain, but it’s not nearly debilitating as it once was.  Anyhoozle, I’m not here to focus on that today, but rather to share some cooler things…

I mentioned the time before last that I’d been working on decorating the new house (as well as remodeling, renovating, remediating, etc.!).  From my medical status mentioned above, you can probably guess that I’m growing increasingly frustrated that this project hasn’t moved along faster than it has.  I’ve got several rooms in various stages of repair and decoration, and I have several art projects in various stages of completion.  Two of them will require a trip to the beach for sand and shells to complete, so I’ve been quite anxious to feel good enough to venture out.

Today’s post will just feature a few of the projects that have been finalized.  Nothing as far as the remodeling is completely finished yet, so I don’t yet have before/after photos of that hard work.  Anyway, here goes…

As you can probably be able to tell from my living room, Joanna Gaines is my hero!

The only clock that is actually running is the red one.  Actually, they’re not all clocks:  One’s a barometer, one’s a thermometer, and one’s a hygrometer.  The other clocks are all set to different “secret codes.”  (The codes aren’t that secret, and in fact I’ll share them with you now:  They’re set to birthdates of all of us in the house and a couple of important anniversaries or dates to remember.)  Above the clocks is one of those 1990s shelves they call “dust catchers.”  I intend to drywall that closed, but we’re considering leaving a secret door when I do and putting a time capsule inside since the wall is themed with time.

The initials are also for the people in the house, myself, my sister Michelle, and my son Jeremy, the “C” is four our last names, and the four is because we have four cats  The four was white when I bought it, so I painted it and added the diamonds.  The “C” was orange, so I painted it.  My sister’s “M” was purple and wood colored!  That was a little trickier to paint.  Jeremy’s “J” was a lot rustier than I wanted, so I cleaned it up quite a bit.  And my “R” was plain white.  After I painted it grey and sanded it to grunge it up a bit, I covered it with chicken wire to give it texture.  (Don’t worry; it’s nothing psychological like I feel caged. LOL!)

This bit of work was a bit trickier.  I went to the library and copied an old map book of the area where my new house is.  (Back when this map was printed, my yard was actually part of a large phosphate pit!)  I then printed the map sections out in red and, here’s the tricky part, I made the canvasses.  My sister cut the wood for the frames (I hate using the chop saw!), and I stapled then gessoed the canvas to the frames.  Then I painted them black, ripped the edges of the maps, and Mod-podged everything.  And to finish it off, the old-fashioned key is where my house would be built a couple of decades later.

Moving on to my bedroom, it has (or rather will have) a writing theme.  Or, as I like to call it, a “writerly” theme.  [WARNING: THIS PART MAY ANGER SOME AVID READERS.  Because I have transferred my library almost exclusively to digital, I gave away a bunch of books a few years back, but I saved some favorites, knowing I’d be using them for art.]

This “R” above is made out of “Gulliver’s Travels.”  I got the initial idea from this “W” on Pinterest, but I didn’t want the flower, so I had to rack my brain to think how I could theme it to the book.  That’s when the giant nails and string hit me like a ton of bricks.

This copy of “1984” is mounted on a board, and, no, the camera mounted on the book is not real.  (Though it’s funny how many people are actually tricked by this.  What’s not funny is that when I explain that it’s just art, more often than not, the people I’ve come across then have a vacant stare because they don’t realize why a camera on a book is art.)  The backboard is just covered with book pages and a few of my favorite excerpts are outlined in black paint.

If you can’t guess from this one, it’s “The Adventures of Tom Sawyer.”  The roof was a bitch to make!  I used comic book collecting backer boards to cut the individual circles, but I should have used card stock.  The thickness of the material made it difficult to work with.  I glued cut out book pages to the circles, then painted a black wash over them, then painted the edges of each “shingle” and attached them all to another backer board to make the roof.  I don’t know if you can see it well in the photo, but there’s a little bird on the roof, and a cat and a lantern in the upstairs windows.  The fence is partially whitewashed and partially dirty, and that’s Tom’s fishing pole waiting to be used on the left.  For the base of this, I actually glued sand to the wood.  (I was going to use sandpaper, but it was a little too small.)  The “grass” is floral moss.

Finally, here’s “Alice in Wonderland.”  I used the 2, 5, 7, Queen and King cards because, if you know the story, those are the key players.  I don’t know if you can see everything on the teacups, but there’s a flamingo, a key, a keyhole, a “Drink Me” vial, a white rabbit’s head, a tag that says “In this style 10/6” and a pocket watch with the numbers going counterclockwise.  I wish I wouldn’t have spread the embellishments all around, but placed them where you could see them all from the front.  I didn’t think that through at the time.

Well, that’s all for today, friends, but I hope to be back soon with some more updates as well as to check on all of you.

Let’s talk:  Would you deface a book in the name of art?  (Do I really want you to answer that?)  Have you created anything that hangs on any wall in your house?  If so, what?  Do you know why the camera is significant to “1984”?

So many changes, so little space to write about them…

Greetings, friends!

It feels like forever since I’ve paid my respects to Bloggyville.  Just over a year, actually.  (Technically, I’ve read a lot of your blog posts many times, was able to comment on them some of the time, but haven’t posted myself in forever.)  I’ve had so many things going on and haven’t actually had a working computer for several of those months (I’ll share why momentarily), but I’m up and running again as far as the techy end of things.  And as for that and everything else going on, it’s too much to go into all the details here, so I’ll give you the quick skinny now, then space the details out on subsequent posts.

In the past twelve months, I have:

• Bought a new (slightly used) house
• Remodeled nearly every room of said house
• Sued my previous landlord
• Lived in the living room for several months while I was waiting for my bedroom/office to be finished (hence the lack of computer)
• Lost a lot of money to contractors who said they could do a job but couldn’t
• Found out that I can’t trust most contractors
• Figured out how to do a lot of contract work myself (with help of my sister, Michelle, and my son, Jeremy)!
• Stayed in flare with my Lupus for another entire year!
• Had bronchitis for 5 weeks
• And then had bacterial pneumonia for 3 weeks
• And thought I was going to die!
• Discovered the absolute best bed in the world!
• Worked on creating custom works of art to decorate said new house
• Designed a few genealogical books for a few people (myself included)
• Uncovered some pretty cool genealogical finds within my own family as well as my sister, Michelle’s
• Had to get a new computer and monitor because both went bad while they were sitting stagnant during my transition
• Lived through and survived a major hurricane (in the new house)
• Had a major change in employment status

That’s all I can share for now, though I actually have another couple of things in the works that I’ll reveal soon.  But just so I don’t keep you entirely in the dark, I’ll share a couple of photos…  One is my new house, and the other is my new life’s mantra.

So, tell me, friends, what have YOU been up to?

XOXO,

Rachel

The Storm

Greetings, Friends!

I hope you’re all doing well! According to my most recent blood tests a couple of weeks ago, I’m still in an active flare that has been going on since “at least September” according to my rheumatologist. She’s had me on a couple of rounds of major steroids on top of the daily steroids I already take, and they seem to be helping somewhat. At least my sed rate number is getting lower and closer to “normal” (which means less inflammation).

Since May is Lupus Awareness Month, I wanted to share a quick bit of info as well as a poem I wrote which will explain what I’ve been up to behind the scenes (besides completely overhauling my blog — Please feel free to take a look around and tell me what you think of all the changes and new stuff.)…

Lupus is Latin for wolf. In the 18th century when lupus was just starting to be recognized as a disease, it was thought that it was caused by the bite of a wolf because of the distinctive rash characteristic of lupus. (Once full-blown, the butterfly-shaped rash heals from the inside out, leaving a bite-like mark.)

“THE STORM”
By: Rachel Carrera

Streaks of light stagger across ebony space,
Jagged lightning followed by the crash of thunder,
The roaring, rolling, rumbling sounds race;
In their wake, remnants of life split asunder.

The storm that rages often spins out of control,
It’s a fiery, ferocious, fierce beast,
A tsunami that crashes and crushes the shore
And demands to be free and unleashed.

All signs of life seem to be gone from within
As the cyclone swirls showing no mercy,
Causing an emotional collapse and tailspin,
The result of internal controversy.

This storm that I speak of is not in the sky
But within the confines of my person;
The disease that ravages me can’t justify
Why it causes my symptoms to worsen.

Whoever said once that life is unfair
Really did quite a disservice
To all who suffer this hellish nightmare;
I can’t think of one soul who deserves this.

Just getting through a day is so stressful
And feels like I’ve been fighting a war,
And looking in the mirror has now become dreadful;
I don’t recognize my own face anymore!

The pain with each step shoots fire through my limbs
As I place one foot in front of the other;
And the throbbing that causes my head to spin
Leaves little hope that I’ll ever recover.

But the pain is nothing compared to the dread
Of the horror that could be in my future,
Of organ failure causing my life to ebb,
And disfigurement from my abuser.

I throw up each day, though I never lose weight,
And my hair falls out by the handful;
I just want this storm to not be my cruel fate
And not extinguish my hope’s flickering candle.

This beast steals my sleep so I can’t even rest
While this battle continues inside;
My immune system is now in a state of protest,
Like an avalanche causing a landslide.

Even the slightest cold now kicks my tail
As germs stay with me like a cloud cover;
A sniffle, a cough causes a vicious gale
And I take weeks, sometimes months to recover.

I haven’t even mentioned the rash that I get
From where my disease gets its name;
It resembles a wolf’s bite, not letting me forget
To add something else to my shame.

But the thing that propels me through each passing day
Is knowing so many more have it worse,
And the lost prospect of their illnesses going away
Makes them feel like victims of a curse.

Their neuroblastoma, their Alzheimer’s, and
Their Amyotrophic Lateral Sclerosis,
Their aortic aneurysms, swollen lymph glands,
Their Huntington’s and cystic fibrosis,

Their cancers, their famine, their anguish and sorrow
Make my lupus feel suddenly diminished;
If they can dare dream of waking up tomorrow,
Then maybe my life’s not yet finished.

So I hold tight to my flickering hope’s candle in the wind
As I seek out a ray of bright sunshine;
And far in the distance and around the bend,
I can almost make out a dark coastline,

Where the waves come crashing as they roll on the beach
As they beat on the shore with their fury;
Suddenly, the horizon feels almost within reach,
So I force my broken body to hurry.

When I get to the dark shore, the sun starts to rise,
And the waves relax some of their mad thunder;
The faint glint of sunlight that now shines in my eyes
Gives me hope that I won’t be pulled under.

A slight brightness follows the gloomy eclipse
As the downpour now wanes to a drizzle;
No longer does life seem like an Apocalypse;
It renews hope that my symptoms might fizzle.

Despite my sore muscles and pain in my bones,
My frequent fevers and inflammation,
And the many medicines that mess up my hormones
Yet promise to be my salvation,

I am told by my doctor when this flare goes away
That I’ll soon have more good days than dreadful;
And blue skies will at that time replace all the grey,
And I can finally slay this cruel devil.

So I’ll take cover now as I wait out this monsoon,
Keep my vigil even if I collapse,
Keep my eye on the sunlight instead of the moon
And have faith that the squall will elapse.

*~*~*~*~*

So let’s talk: Did you know where lupus got its name? Did you notice I’ve been working behind the scenes to revamp my blog? What have you been doing?

#LupusAwareness

A New Set of Bullies

Happy New Year, dear friends.  As many of you know, 2016 was a roller coaster ride for me, both physically and emotionally, because of my health.  I puked nearly every day and absolutely every week, no less than twice a week, with the exception of a very few times when I found intermittent relief with one gimmicky pill or another.

I developed what I thought were more food sensitivities, as I had increased swelling and pain after ingesting certain ingredients.  For nearly all of 2016, I almost exclusively ate grilled cheese sandwiches because that was about all I could hold down.  (I used to say the only thing better than cheese is more cheese.  Do you know how sick I am of cheese now?)  And I got sicker.

I had my intensely infected gallbladder removed which provided temporary relief, only to find out that the surgeon left an extremely calcified and diseased gallstone in me which made me sicker than ever for nearly a month until it worked itself out.    And I got sicker.

I literally ate acid before each meal to help it digest before I vomited it.  And I got sicker.

My energy was ebbing to the point that I barely was able to stay awake for work hours only.  I was losing big clumps of hair everywhere.  Every. Single. Day.  My vision was blurred, and I was dizzy most of the time.  And I got sicker.

I put up with asshole “friends, acquaintances, and family” calling me a hypochondriac, telling me I didn’t “look sick,” doubting that I vomited as often as I claimed because I hadn’t lost much weight, telling me I needed to see a psychiatrist, and advising me to seek mental help.  I became the butt of their jokes, either by claiming, “Oh, we can’t serve that food; we might as well serve cardboard or Rachel might throw it up,” or “Maybe instead of visiting the toilet, you should visit the psychiatrist’s couch.”  I tried to force a smile.  I tried to shrug it off and not be a bad sport.

But I was boiling inside!

Can you imagine how stressful it is to not know what’s wrong with you, to want to eat like normal people, and to select a meal not based on price, availability, or taste, but rather solely on how it might taste when I throw it up later? The simple question, “What’s for dinner?” literally reduced me to tears on more than one occasion.

I feel that most of these so-called “friends” were no less bullies than the jerks on the playground when I was a kid.  I know they thought they were funny or cute, or they didn’t know what to say, or they were the type that needed to “fix something” and because they didn’t know how to “fix me” they had to just say something.  But the sharpness of their words stung just the same.

After over 6 months of tests with no real answers, I was disgusted by doctors, and just fed up with life in general.  And then my hair started falling out even more.  Since I’d already been diagnosed as anemic, I made an appointment at an entirely different clinic, hoping I could just get an iron infusion and not have to wait for the pills to kick in.  As I mentioned in my last post in October, this doctor was awesome!  He’s the epitome of what a doctor should be.  I kept the focus of my issues just on the low iron anemia because I didn’t want to go through the same intense GI tests that I’d already had to no avail.

I accepted that hugging the toilet was a way of life, and I just wanted my energy and hair back.

He kept asking different questions, and I kept my answers vague because I only went there for the infusion prescription.  I got annoyed when he asked if I was “regular” (because that’s none of his business, right?), so I rolled my eyes and dismissed the question with, “No, but I’ve been that way for years because I feel swollen inside after I eat most foods.  It’s just how I react with food sensitivities…”

The word “swollen” caught him, and he started writing so fast, his pen was a blur.  He went from ordering a couple of tests to more like fifteen.  When a couple of those results came back irregular, he repeated them then sent me to a specialist when they came back irregular a second time.

So, apparently, I’ve been wrong for years.  The swelling I get after certain foods is not a sensitivity or allergy.  The pain and swelling I get after eating or upon waking the day after I eat a “no-no ingredient” is also not from a sensitivity or allergy.  My dizziness and exhaustion is not necessarily from having low to no nutritional value to my diet.  And my chronic vomiting is not from a sensitivity or allergy.

I was diagnosed with lupus.

I’ve tried to avoid telling people so far because I wasn’t ready to have to deal with the stupid comments from the same jerks that made me the butt of their jokes.  But there were certain people I had to inform, and, yes, it’s left me just as angry and pissed off as before!

Lupus kills!

It can cause excruciating pain in any part of your body.  It can destroy your organs, including robbing you of your eyesight, your hearing, and even your brain!  (I now wonder if that’s why my gallbladder was so filled with infection.)  You often have to avoid the sun with lupus because sunlight can cause a flare.  Stress can cause a flare.  Food can cause a flare.  Colds or infections can cause a flare.  Exhaustion or an injury can cause a flare.

If you’re unaware, lupus is an overactive immune system which causes your immune system to attack everything, even healthy cells and tissues, organs, etc., within your own body.  So just being around someone with a simple head cold means I can get their cold, take 3 or 4 times as long to heal, and possibly even get a worse infection from it, and then of course, deal with a flare.

I always thought I had a poor immune system.  I never realized I actually had an overactive immune system (which results in the same thing: slow healing time, easily infected, etc.).  So everything I’ve done to try to boost my immune system has been counter-productive, actually causing my immune system to work even harder and fight against my own body even more.  {I’ve already dealt with this since my diagnosis, having had bronchitis since Thanksgiving weekend, and I’m just now starting to get over it!}

During a flare, you can expect, pain, inflammation, swelling, vomiting, migraines, hair loss, facial rashes, fatigue, dizziness, memory loss, cognitive skill loss, and organ damage.

It’s scary as hell!

Yes, it is true that between 80% to 90% of people diagnosed with lupus can have a normal lifespan with the appropriate medication and monitoring, and I pray to God that I’m one of them.  But so far, the medicine I’m taking also causes hair loss, muscle loss, dizziness, water retention, brain fog, and it can cause a dreadful sounding condition called “moon face” where your face grows and flattens out from fluid (Thank God I haven’t had that yet – and thankfully it is reversible if you stop taking the medicine).  But I have had increased loss of hair, loss of muscle, a lot of forgetfulness, inability to concentrate, and worse yet, the loss of speech!  It is so frightening to be in the middle of a conversation and know what you want to say, yet not be able to make the words leave your lips!  (Oh, and by the way, I’m still puking regularly, but the doctor says once one of these medicines kicks in some six months from when I started taking it, that should level out.)

I now feel stupid and ugly!

I’m angry because I’ve already dealt with a world of shit, and despite that, I’ve still tried my best to refrain from complaining, but I don’t deserve this (not that anyone does!).  I’m pissed because the idiot doctors I saw since 2015 never once sent me for any of these tests so I could get a handle on this sooner.  And I’m scared to death!  Because while there are plenty of people with a long lifespan, there are also plenty of people who die from this awful disease long before they should, and their only solace from it is that they’re finally out of their excruciating pain.

I know I probably sound like a wimpy whiner.  I know many of you probably have lupus and are living just fine.  And I’m sure I’ll “settle in” to my diagnosis soon enough.  I just wish I had  a better “support system” in place to help me deal with the scariness of all the unanswered questions I still have.

That being said, do you know how many of the same assholes who played me off as their joke have had the nerve to tell me, “Well, at least you finally got a diagnosis,” or, “Oh,  my aunt died of that,” or, “Oh, that’s nothing.  I knew someone once with that, and she lived a normal life.”  But the absolute worst has been, “What’s lupus? [Then I explain as above…] Oh, I know what you mean!  Once, I took a medicine that made me lose my hair for almost six weeks, and it drove me crazy…”

Reactions such as this make me want to scream! 

So while these friends of mine are probably well-intentioned, their comments throughout my journey have hurt me no less than when my arch nemesis in grade school used to pick at me relentlessly.

I’m stepping down from my soap box now.  I appreciate your allowing me to vent and kick and scream and cry on your shoulder today.  That being said, now that I’ve gotten it all out, I hope to be able to, in true Rachel fashion, pick myself up, dust myself off, and get on with my life and the act of living with this diagnosis only being a little hiccup.  I’ll definitely appreciate each and every encounter much more as I walk my journey.  When I next see my doctor (in February), I’ll get tested to see if it’s one of the medications or the disease itself that’s causing my recent brain problems, so I’d appreciate your prayers and good vibes until that time.  And I’ll keep you posted as I rearrange my bucket list and hope to have some wonderful adventures.

Let’s talk:  Have you ever received scary news from the doctor?  How did you cope?  How would you deal with people who joke at your expense to the point of being cruel or who blow off your ordeal?