This morning, I dragged myself outside to the catio and just sat there for a while warming my joints and charging up for the day. Sometimes I wake in stunned astonishment at how bad I feel; this was one of those days. The cats, confused by the change in routine, finally stopped begging for tuna and came out to check out the wildlife. Things were certainly busy in the yard this morning!
The bird feeder was open for business with a steady line of little birds waiting for their turn at the feeder parked in the low branches of the tree. Higher up in the upper branches a blue jay was calling back and forth with the other jays in the neighborhood. A bunny napped shamelessly in the middle of a patch of dirt at the upper end of my yard (why do I have a batch of dirt? Bunnies!!! They dig and roll in this dirt. I love the bunnies more than I love the lawn…), and a pair of doves napped nearby in plants escaping my garden. There were grasshoppers in the catio to Mateo’s delight. Squirrels ran along the fence as I baked and recovered; there was a slight breeze and the day was cooler. Time to water the flowers and go in.
There were Japanese beetles in my roses!! Very cute, and very not wanted. I drowned those guys in a bottle of soapy water. Bad beetles, bad. No matter how well things are going, there is always something to deal with, right? I was completely recovered and ready-to-go by the time I went in to deal with the tuna-starved cats and my latte machine.
Not a bad start for the day, right? Bake in the sun when you need it, enjoy all the pleasant things happening around you, and take immediate action to deal with stuff that is unacceptable.
It has been another tough week. Having gotten through a huge round of doctors’ appointments and testing, you would think I could just rest up for a few days and recover. Not so much. It is stressful waiting for test results, especially since my cardiologist was openly concerned when I saw him at the end of July. I felt dizzy and struggled with vague symptoms like a sore throat and stiff neck for a few days, and then finally began to face the reality that something more than scleroderma might be going on.
What pushed me into action? Well… the very last medical test was MRIs of my bad boy knees, and the technician who worked with me was concerned that the pupils of my eyes were dilatated more than they should be. There was concern and lots of questions about my medications. “No,” I insisted. “I’m not taking any drugs that weren’t prescribed.” I finally got out of there and immediately forgot about the incident because I had just spent an hour in an MRI machine that looked like a giant sandworm from Dune and made some of the same noises, too!
Then the next day, I fell over sideways while combing my hair. I tried to put on my shoes, and I fell over again to the same side. Huh. That is kind of unusual. I checked my eyes in the mirror, and yep… those pupils looked pretty dilatated. I called in to my health provider, and I was sent to Urgent Care. The words “this might be a brain bleed” got my attention, so I filled up the cat food and water dishes, put a phone charger into my purse, and off I went.
Listen, going to urgent care or the ER is kind of risky if you have a rare disease or two. Either the doctor has never had a patient like you before and just refers you on to a specialist, or the doctor is kind of excited to get his/her hands on you because when will another patient like this come along? They want to do something!! Sign me up coach! I’m just trying to represent here!! You can literally see it on their face and in the sparks in their eyes.
The urgent care doctor was the second type of doctor.
My eyes were fine when he checked them, and we concluded that what was happening was probably a transitory effect caused by one of my meds. It seemed reasonable, so I was okay with that. Great. I’m out of here, no brain bleed for me! Nope. Nope, nope, nope! He had a real, live zebra here, and he wasn’t letting it slip away!! He felt that while I was there, I should have a lot of tests run to rule out a hypothetical infection that was pushing me over the edge and causing all my fatigue, dizziness, headaches, etc. The stiff neck was concerning. No one should fall over while combing their hair… Sigh. It is hard to argue against such reasonable observations… I didn’t even mention that it hurt to breathe, but there was that, too…
I approved some testing, declined others, and off to the x-ray machine and lab I went. Everything was negative, but he decided that I should go though a course of wide-spectrum antibiotics anyway since I was immunosuppressed, and something clearly was not right. Fine. I’ll do that. My whole life is “not right” and antibiotics make my unhappy gut even more unhappy, but he was so earnest about helping me: I took the plunge and started the pills.
I just want to note that it is hard to score antibiotics if you feel sick with vague symptoms, but being a zebra got me special treatment. I’m still processing that because most of the time my symptoms are dismissed. My knees have been hurting for years and doctor after doctor has just blown me off because the joints seem fine. They are swollen, but my inflammation markers are normal, so nothing is done… My knee x-rays were normal, so this time I requested MRI imaging, which is how I ended up visiting that Dune machine, meeting a nurse upset about my eyes, and now, landing me in urgent care. There is some type of zebra paradox here: specialists who disregard symptoms that set off actions in mainstream health professionals, and special treatment that normal people don’t get because… zebra.
Anyway, I took the antibiotic. It was a strong one that I had never taken before… and two days later I was better! Even my gut has improved. The headaches have stopped, and my dizziness is fading into the background. My chest pain is gone. Yay antibiotics. Yay earnest young doctor in the urgent care facility. He’s written me two notes following up on the test results, and I’ve let him know that I am, indeed, much better.
The last of the test results that my scleroderma care team ordered have come in, and it looks like there may be some adjustments to my care in the future. My pulmonary hypertension is under control, but my heart failure has gotten worse. The steroid injection in my hip has made a huge difference, and I am walking better, but my knees hurt more. There is, indeed, something wrong with my knees; I don’t know if they can do anything about it. The words on the report are
Which is commonly known as “runner’s knee”, and is an overuse injury in most cases. Not in my case, obviously, since I can hardly walk! I have edema in the bone, and in the cartilage, and there is calcium being deposited in the soft tissue which is a response to… you guessed it… inflammation.
That dang zebra is rolling on the floor laughing!!!
It has been quite a week. I pushed for more testing, paid expensive copays to get it, and have gotten validation on the bad-boy knees. I understand a little better why the cardiologist was concerned, but the news isn’t as bad as he anticipated, so the outcome (Class 3 HF) isn’t as bleak as it could be. I learned a lesson about not ignoring symptoms, and the zebra outing to urgent care worked out much better than I expected. I turned in 43 hats and 7 chickens this week to my community knitting group, and yesterday I bought a bushel of roasted green chiles. A tough week in some ways, but also a good week. A week of crazy zebra-related events, knitting, and even green chiles.
Tonight is the blue supermoon, a rare event, and kind of special. Knitting in the light of the blue supermoon is the best way to end a day that started baking in the sun.
Shine on, supermoon, shine on.
Yarn, Books & Roses 
Your chickens are so cute. Love the flock. You sound like my husband with all his medications. I can’t keep up with all the medications he takes. Yet we are very lucky that he able to still do a lot. He too often needs to sit in the sun to relieve aches and pains. I’m so impressed you are able to keep such a positive attitude through your your many health struggles.
I have a nice pill case that I set up every week that keeps me on track, and I finally installed an app on my phone that reminds me when it is time to take pills so I won’t forget, and then, of course there are the cats who help so much with a positive attitude.
What a beautiful flock! I am glad you are feeling better
Jesus, Marilyn ! – you DO this, doncha ? … get a whole lot of stuff going wrong and causing you more pain and/or discomfort than usual. Sighh … I wish you wouldn’t !!
…. . .. . … . …… … …….. !!!
What’s that ? You wish you wouldn’t, too ? [grin]
Whereas I wish your various health problems and the way you describe them weren’t so terrifically interesting: I feel like a sadist reading it all.
I think I like the cyclamen-coloured ESC best. But they are all simply wonderful, and so are you.
I think that the week was so bad because of the steroid injection in my hip. Steroids always make me feel great for a while, and then there is the crash, depression and crying. Last week was the crash I think; this week I am dealing with things much, much better.
It is interesting, isn’t it! I have to admit that I kind of understand the enthusiasm of the doctor in the urgent care unit, and I did get good care.
The cyclamen-colored chicken was the first picked when I sent the pictures out, and it was so well like I’m making another one for someone else who has her heart set on it.
Thank you so much for the good vibes you always send!!
Steroids are definitely a double-edged sword, eh ? – they give great muscle-mass, too … but then you’re hooked into the system and know that when you stop at the gym, you’re going to be a mess. I know this because my beautiful nephew over in Perth did all that, and is still going to the gym at 61 because he doesn’t want all them muscles to turn into flab.
I dunno why I even mentioned a favourite ESC: they’re all gorgeous ! Bit like those two moggies of yours …
🙂
I think that this type of steroid doesn’t help with muscles, and in fact, it pulls calcium from your bones. It sure does stop inflammation and makes the immune system settle down for a few days or weeks… They used them to halt my lung inflammation while they dialed up my immunosuppressive drug dose last year, and I had some crazy bipolar stuff going on then, too. Lots of crazy shopping and plans while I felt good, and then there was the sad days.
Always, Marilyn – they will always turn up again. So what we hope for is that the gaps between them get larger – wider – more hope-filled. Why not ?! XO
Goodness me, yay for the young doctor prescribing some antibiotics, the reluctance to give them to anyone nowadays seems so high here now. Yay for those pussy cats keeping you company, keeping you entertained and giving you a reason to get up each day, yay for those gorgeous ESCs, yay for the wildlife enjoying your beautiful garden…well except the beetle.
Thank goodness for these positives to keep you going through the struggles of your health. Xx
It is really difficult to get antibiotics here too. They are very hesitant to prescribe them unless they have a clear infection. This is the second time in a year that a doctor just said… yeah, this goes against standard practice, but I think we should just put you through a course of antibiotics, and then they did. Both times it was a good call.
I do have a lot of positives around me. I went to my knitting group on Saturday and had a great time!! I wait all year for the green chile crop to arrive, so that was a fun outing, too. How can you go wrong with wildlife?
Here in the US cats have suddenly become a big thing: Trump’s running mate disparaged single women with cats, and then he just kept digging himself a bigger hole with further comments (he doesn’t mind cats… it’s that the women are childless!!!) Yeah. I love my cats, and now I openly militant about them and wearing a cat shirt every time I go out of the house…
As always, your spirit shines through
Thank you.
Good grief, woman. Hogging those maladies all to yourself. The medical schools should invite you in as a test for seniors: How many issues can you diagnose? Hurray for antibiotics. Truly miracle drugs.
A delightful flock of ESCs and I especially love the crown. What a creative touch.
That’s our Marilyn, Colorado – a creative poisson !!! [grin]
*little zebra curtsy*
I’m a shining example of thinking outside of the box when making a diagnosis. I was so glad to see the knee MRI results come in the way they did…a condition that is very unusual and completely outside of the normal diagnostic criteria. I’m still waiting to hear back from the rheumatologist.
The ESCs are really looking cute, huh. I wasn’t completely happy with the colors of the teal chicken, so I put a crown on her! The new color made it all work, and it only took three tries while watching a YouTube video to figure it out…
But the teal chicken is gorgeous. Teal and purple are my two favorite colors!
Oh my goodness, it sounds like you’ve had quite the week. I’m glad that you got some help and are feeling better!
Is it just me, or is that one chicken in the middle a bit smaller than the others? I hadn’t realized the ESC pattern allowed for size variation. (Though I suppose all knitting does, even if you’re just knitting with different yarn weights.)
The colors on that last chicken make me swoon!
I’m glad you went to Urgent Care, and I’m glad you’re feeling better. That’s a good result.
Aren[t they great colors?!! The teal is from Spun Right Round and the raspberry and purple are from Alexandra the Art of Yarn. I wasn’t completely happy with the contrast of the purple in the comb, so I found the directions for the little crown online and with the magic of YouTube I was able to make one.
I’m so glad you went to Urgent Care and so glad you found a new young doctor who cared ad was able to help some! Your emotional support chickens are beautiful, and I’m sure will be lifting spirits all over the place 🙂 Sounds like your porch and yard is just the perfect place to rest and recharge.
glad you went to the urgent care! I have a couple of autoimmune diseases and never know when to go but I felt more weird than usual and thought it was strep. My throat did not look bad but yup!! I knew something was off. Have to always trust your instincts. Difficult to kmow when our main diseases make us feel like crud all the time. Praying things will get better for you.
It is crazy, isn’t it. I’m never sure what I should ignore, and when I should take action. So much of what I deal with is dismissed by my physicians, and then when I see someone outside my care team they respond with immediate offers of drugs. 🙂 The Zebra (or Chronic Illness) Paradox!!
Thank goodness for over-enthusiastic doctors! I hope you’re feeling much much better by now.
I love the teeny chicken crown, but did the others not get jealous?
He was a really nice doctor. I was shocked by how high end this urgent care (at Kaiser) was; I’ve seen smaller emergency rooms!
The chicken with the crown pretty much rules the roost!!