life with a chronic disease and a really big yarn stash
Author: Midnight Knitter
I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.
This was quite the week, wasn’t it? I’m home in self-isolation as are many other people who read my blog. Fun times, huh! I have lots of practice with this and have been reflecting on how to share some of my insights and coping strategies in an upcoming blog. Along with all of the news and stress of the week, we also had a major snowstorm a couple of days ago.
This was kind of ridiculous! It was windy, part of my back fence is sagging, and my front porch was buried in a foot of snow.I went out to shovel the snow the next day after things had warmed up, but after only a few minutes my most wonderful neighbor in the world came out to do it for me. I tried to stay out to shovel with him, but he wasn’t having any of that! Directed to go back indoors since I was limping and panting a little, I finally bowed to the voice of reason and went back inside. I’m making his family cookies later today!!
Here’s what else happened this week:
Knitting
I’m going to admit that I started out the week stressed and a little sad. Times are bad, my doctors have cancelled all of my medical procedures, and I was told to self-isolate like my life depended on it. Since I wasn’t quite up to tricky knitting I retreated from knitting the cat to working on the soothing and mostly mindless stockinette knitting of my new Pebble Tunic. It is growing, people!
I’m about 14″ below the armholes and a couple of inches below the openings for the pockets. The fabric is soft and yummy, and just a comforting piece of knitting in stressful times.
The colors are hard to get in a picture, but this sweater is mostly soft pink with little flashes of grey appearing through the mohair halo. So soft. So huggable. Just what I need right now as I binge watch shows on Netflix.
Garden
My monster orchid now has 9 blooms and is hanging out in the living room.
While everyone around me was loading their carts with toilet paper and spam last week I was filling mine with cheese, Bai drinks and potting soil. You know, essential items! I repotted a small weeping fig tree that I have growing in my front window and then went after the monster orchid; the blooms had made it so top heavy that the plant kept falling over and one of the leaves broke. Fine. I will repot you now even through I wanted to wait until you were done blooming. It’s kind of a risky move, but you’ve given me little choice, monster orchid!
Monster orchid: Thank you, I feel much better now.
So far the orchid and the weeping fig seem to have survived their repotting experiences. I plan to prune the fig in a few weeks if it continues to do okay. Right now it is pretty bushy looking and I am trying to produce an indoor tree.
Books
I spent the whole week reading this entertaining and mindless science fiction book. You have to absolutely suspend all scientific knowledge to make this book work, but it was still engaging enough to keep me going. I became annoyed by the libertarian theme running in the background of the story (rugged individualists escape an over-controlling socialist government and all taxation and regulation to flourish on the moon in scrappy anarchist colonies…) as the week’s events here in the United States made it apparent how central control by governmental agencies is necessary in extreme circumstances like… say… an unfolding pandemic and global economic collapse. Just saying.
But if you want to read about highly intelligent dogs in space suits, deep water ships that can fly to the moon, and racing around in tunnels on motorcycles, this book is for you.
There is another book in the series waiting for me to read it, but I think that I’m ready to shift to a couple of books that are more intellectually engaging. Waiting for me to read them are American Dirt (by Jeanine Cummins), Weather: A Novel (by Jenny Offill), and Lab Girl (by Hope Jahren).
Well, that’s all for the week.
Please, please, everyone, be safe!
Remember to read a little, knit a little, and garden like your heart can’t live without it.
And make something yummy to eat while you are at it!
This week I finished up the pulmonary tests to see what was up with my lungs. This was pretty darn stressful and the poor BLZ was just besides itself with the trauma of walking into a major hospital to get admitted for outpatient testing.
This is my son’s kitten Jonesy, named after the cat on the Nostromo, the ship that accidently picked up a deadly Alien while answering a distress beacon on a strange planet… Jonesy is utterly fearless, more than capable of facing down a scary monster alien. This Jonesy is also pretty darn fearless. Be brave, face this down, I told myself while petting Jonesy.
I was brave. On the day my state opened up the first drive-through testing station for the Covid virus, I presented myself at outpatient admissions. I wore my fleece gloves the whole time I was there and followed all of the safety guidelines. I combined two appointments into one so I could pick up the equipment for overnight oxygen level monitoring while I was in the building for pulmonary function testing. The hospital was almost deserted and had bottles of hand sanitizer out for use at every stop on my route, so it wasn’t as bad as it could have been. I literally swerved and walked around anyone in my way, especially if they were wearing a face mask…
In case you all need a reminder, my red blood cell count (rbc) is way too high, and I have blue lips and shortness of breath. My internist diagnosed polycythemia, and once I googled it I discovered that I have every single one of the listed symptoms. The purpose of all of this testing is to uncover the underlying condition causing my rbc to rise. So, let’s just jump to the chase. Here are the results:
It’s not pulmonary hypertension. Yay! That would have been really bad news. My echocardiogram showed that I am at the upper limits of heart wall thickening, and my pulmonary artery is at the upper limit of normal, but I’m hanging in there.
My oxygen level fell below 89% for almost an hour while I was sleeping the night I wore the monitoring equipment. Yay!! Houston, we have found a problem!!
Once the results were in the pulmonologist’s office called for a phone appointment and I got the good news. Well, the sort of good news. I have to go on oxygen overnight to keep my levels up, and the hope is that my rbc count will start to drop. If overnight oxygen doesn’t do the trick I may have to go to oxygen 24/7, but I’m not there yet. (The BLZ is happy but a little sad too. The BLZ hates to wear oxygen, and really doesn’t want to wear it when it goes out shopping… ) Seriously, I don’t appear handicapped until I have to walk with a cane and wear oxygen… then there is no hiding it any more.
Thinking about future appointments and the procedure with the hip specialist (I need an injection of steroids into my bad-boy hip), I asked what my risk from Covid was… (The BLZ was trying to not cry) and my pulmonologist told me straight out that she thought I would survive an infection but that I should put off any more trips to medical clinics for a few more weeks so that hospitals could finish gearing up for severe cases. Well, shoot. (The BFZ is now sobbing…)
Then I throttled the BFZ into silence and headed out to buy the last of the supplies that I needed to get through a few weeks alone. I’m immunocompromised; the medications that I take to control my autoimmune diseases have helped me to become stable, but they also make me high risk for any infection. Nothing has changed, I reminded the BLZ, but now the risk of a serious infection is coming at a time when the medical system may be overwhelmed and unable to take care of me. I’ve been using good judgement, social distancing, and hand washing for a few years now; I will continue for myself and everyone else sharing this scary time.
The truck carrying the oxygen equipment was at my house waiting for me when I returned so I am set up. Hopefully the BLZ will now slowly fade away and I will stop panting for air every time I move.
If this was a race to get new test results into my chart, the underlying cause of my polycythemia identified, and remedial measures into action, I have made it. I have a phone appointment with my new rheumatologist next week and I will ask her about the hip procedure and referral to the foot specialist, but I think that in the current unfolding Covid crisis there isn’t any hurry.
As for the inner voice that worries and feels panicky, my inner BFZ voice, I am going to smooth it into submission with the peaceful zen of knitting. Be brave, be brave, I purr to myself. Just like my son’s kitten Jonesy.
Life is suddenly getting a little intense, isn’t it? I hope that everyone is safe and that you have your plans (and food) in place to prepare for days and weeks at home. I feel that I’m about as well prepared as I can be: months of prescriptions on hand, a yarn and craft stash that can keep me occupied for months, if not years, and all the consumable goods for several weeks at home. I already am a bulk buyer who keeps a well stocked pantry, so the last minute shopping that I had to do was pretty minor. I bought some potting soil, canned goods, some meats to freeze, and the most important item on my list:
While everyone else was grabbing toilet paper and Spam, this is what went into to my cart!!
I’m not hoarding. This is essential for life! I also need coffee, but I bought a huge bag a few weeks ago, so I am set!
Knitting
I am still running around to medical facilities for testing, and even fit in a dentist appointment and a phone appointment with one of my doctors. The knitting is suffering in consequence, but the sweater, a Pebble Tunic (Joji Locatelli) is slowing growing and I am a few inches away from the pockets. Most of the knitting went into the knitted copy of my son’s kitten Jonesy. I finished the back feet this week and am ready to start the front paws.
Those back feet look just ridiculous, don’t they! Once they are sewn up and fitted into the body of the cat they will look much better.What do you think of the color match?
I hope to get this done in the next week. I can’t wait to get the eyes in and the ears onto this cat’s head!
Garden
This week all the birds came back and we had rain after months of snow; Spring is right around the corner. My indoor miniature roses are getting tired of the indoor life and long for stronger sun, but I am suddenly getting more blooms on them.
At least the mildew that was a problem in the early winter has gone. Hang on little bushes; in a few more weeks you will be headed outside again for the summer.The orchids continue to wow as more blooms appear. I seriously am in love with the monster orchid. I put it out on display in the living room for most of the week and then it returns to its floodlight for a few days of quality rays. So far this is working and the plant continues to bloom and look healthy.
Books
Today I finished (at long last) The Overstory by Richard Power. This is an amazing book and totally worth reading, but I want to make some caveats:
There are a lot of characters with intertwining stories. Their names change from time to time. The author jumps back and forth between the characters as he synchronizes the story line elements to build a complex, but compelling, conclusion. This is not a good book to read slowly over a few weeks.
I listened to a lot of this book while knitting, which was another mistake. It made things too slow. The jumps between characters, which is obvious in the text formatting, was confusing in the audible version. I couldn’t keep track of the names and shifting imagery the way I should of.
You kind of have to love nature, appreciate art, and value a complex multi-layered story to enjoy this book.
I am a geek, a biologist, and an outdoor educator for my state. I think that visiting a fish hatchery is a fabulous outing. I long to have a bee hive. I tend to let spiders and shrubs just do their thing with a little gentle intervention… and I also struggle with my neighbors to leave my front lawn alone; they will trim shrubs, spray for weeds, and edge the grass if I don’t keep an eye on them. These men are trying to help, and I appreciate them immensely, but that perfectly trimmed shrub just had all of its flowers clipped off… why do men think that shrubs need to be perfect cubes? I mulch under my rose bushes and they helpfully clear out my flower beds. They also take cuttings from my plants and admire my roses. I do manage to keep the back yard the way I want: the leaves don’t get raked in the fall, and the dandelions flourish back there in the spring for the bees. By midsummer my back lawn looks great, I have bees swarming my other flowering plants, and the neighbors comment from time to time about how nice it looks. Somehow the front yard doesn’t do as well… because of all this I appreciated some of the messages in the book.
I’m glad that I read The Overstory, and the name is really meaningful once you have finished the book, but I do think that it isn’t for everyone. Me, I will never look at a tree the same way again.
Have a great week everyone!! Read a little, knit a little, and garden like your heart can’t live without it!
I feel like I am in a race now. I absolutely, positively need some answers to all of my little medical issues, but I have to hurry, hurry, hurry because the Covid-19 virus is already in my state and I think that in just a matter of days or weeks the health care machine is going to be devoted to critical care and the pandemic response. I hope none of my doctors get sick. I really like the nurses in their offices. Gee, this is starting to get to be really stressful…
Let’s take a little break to smell the roses… umm… the orchids. Look at how nice my rose gold orchid is doing in the living room these days.
So, this is the situation as I got into the car and drove to medical clinics FOUR different times last week. By Saturday, when I needed to drive to a facility an hour away for MRIs of my right hip and left foot I was starting to feel like I was pushing my luck. The BLZ totally wanted to stay in bed. I was worried about having to go through an urgent care waiting area full of sick people because the last time I did that I came down with… THE FLU. Ugh. The place is sure to be crowded with weekend warriors and sick people who were afraid to take off work on a week day…
When I got there the parking lot was almost empty. What?! What is going on? I checked on my phone to make sure I was at the right facility, and then went inside to see if I could find someone. The place was deserted!! The only person in sight was the security guard in her glassed-in station. I checked in with her to discover that the entire facility was closed except for… wait for it…medical imaging!! Woohoo!! I clomped down to the basement for my 90 minutes in a MRI machine feeling pretty good about my chances of avoiding this new virus that I’m now sure is gunning for me. All went well, I headed home, fixed myself a little dinner, popped a couple of gummi bears into my mouth while I was cooking, and BROKE A TOOTH!!
How about another little orchid break? You can see how big the monster is compared to my other orchids.
Sigh. Now I have another two medical appointments because the tooth is sure to need a crown. Plus I have two more testing appointments next week which will really be starting to push the safety margin. The BLZ is not happy.
Today I saw my wonderful dentist who let me know that gummi bears are notorious for hurting teeth. Who knew? He fixed my tooth and gave a computer print-out for a type of safe gummi bear, and before I left the office I saw that the MRI test reports were ready. That means my rheumatologist already released them. I read the reports in the car in the parking lot on my phone before heading home. (Although I wanted to go get my gummi bears!!)
Background: I have been struggling with painful and swollen joints for at least three years now. My last rheumatologist tested me for inflammation markers (C-Reactive Protein, to be exact), and since my level is normal, she concluded that my joints were fine, that I was a whiner, and the symptoms that I reported were exaggerated. (!!) I wrote about the last awful appointment I had with her in this post. After I had recovered my mojo and began to take action to improve my situation I wrote about my old rheumatologist and my swollen joints here. My new rheumatologist, who I saw last week, ordered these MRIs to check some lumps on my foot and my bad-boy hip. She wondered out loud why no one had followed up on my first appointment to the hip specialist. I think I’m going to be much more happy with this rheumatologist.
Oh, my. My hip joint is really bad. The word severe was used. There is edema in the bone! There is fluid around the joint that is pushing out into a bursa towards the front inside part of the hip joint. (The very bursa that I asked about before when I saw the orthopedic specialist. It couldn’t be involved, he assured me, because that would be very uncommon. The BLZ is braying “I told you so!”) A tendon on the outside of the joint is partially torn. The synovial lining around the joint is inflamed. Even joints in my ankle (that don’t bother me) are inflamed and have fluid in them. Stunned, but feeling absolutely vindicated, I began to drive home. Before I had even gotten to the freeway the new rheumatologist was on the phone to me. She is sending me back to the hip specialist and I need some steroids into that hip joint as soon as possible. And maybe surgery. And I should go back to physical therapy. The BLZ decided we should mention my knees later on… Oh. I almost forgot. I also have two benign tumors on the bottom of my foot that will require another specialist. Did you hear that thud? That was the BLZ flopping over backwards in dismay.
After a little knitting this evening the BLZ is feeling more the thing again. Look at how far I’ve gotten on the knitted kitten!
Tomorrow I head back to the clinic in the north to get a pulmonary function test and to pick up the equipment for overnight oxygen level monitoring. I won’t touch anything, BLZ. It will be okay. We are brave! We are on a roll now and we are getting some answers!
This week I have been really busy with appointments and testing. I wrote about the first round of doctor’s appointments in this earlier post (The Blue-Lipped Zebra Report) where I also showed off my fabulous monster orchid in bloom and a pair of finished socks. I finished the week with an echocardiogram and two MRI tests. In the week when COVID-19 arrived in Colorado I walked into 4 different medical clinics feeling like I was walking into the lion’s den. Hopefully there will be some good results soon. Next week it just keeps going as I have two more tests scheduled; after the test results arrive I have appointments with two of my doctors again. Whew!
Knitting
Knitting took a hit this week as I spent too much time driving around completing medical tests to get much knitting done, but I did make some progress on the Pebble Tunic.
Sigh. This is the part of sweater knitting that takes out the faint of heart. I’m knitting down the body of the sweater, and even though I’ve added almost 6 inches of knitting, it feels like I’m not getting anything accomplished. In about 4 more inches I get to add the pockets. Yay! Something different.
I’m knitting the tunic holding a single ply fingering yarn with a silk-mohair lace yarn, and knitting with the two yarns is just a joy. So soft and yummy feeling. My project notes are here. I also started knitting a copy of my son’s kitten Jonesy, which is really fun and involves even more yummy mohair. Check this out.
Once again I’m using the pattern Cat by Claire Garland. If you would like to see what yarns I’m using you can check them out on my Ravelry page.I’m going to use some embroidery to add more color to the face later (stripes and freckles) but I think that I’m doing pretty good on the color match. I can’t wait to start knitting the stripes in Jonesy’s body.
Garden
All of this medical testing is a little traumatizing: long drives to cold rooms where I battle to control my Raynaud’s while the tests are being run. Today I drove 2 hours to be trapped in an MRI machine for 90 minutes. One hand was solid blue when I got done, but as soon as I got outside into the warmth it pinked up again. After fun like that I need a little reward, don’t you think? After leaving the clinic I drove straight to the nursery and bought my African violet some little buddies. Aren’t these just the cutest?
Aren’t these the happiest guys ever? I found the little pots on the discount shelf: perfect!!
These violets are really small and were next to the miniature plants section, so I’m not sure exactly how big these plants are going to be, but they are blooming like crazy so I have high hopes for these little guys. My original African violet is the one in the background.
Books
Another sigh. I’m still reading the same book, The Overstory by Richard Powers. I’m further along with the story, and, as I anticipated, the cast of characters (all people with a relationship with a tree), have met up and are now activists trying to save the old natural growth forests in the western US. I don’t want to spoil anything, so I’m not going to share any more details of the plot, other than I am fascinated by the work of Dr. Patricia Westerford, one of the characters in the book. She studies mechanisms of communication between trees, and in particular, is studying Douglas firs in one part of the book. Plants are crafty organisms that use lots of mechanisms to respond to the environment. They use hormones to control their growth, and they are able to track the hours of the day (or maybe it actually is the night) so that they bloom at the right time of the year. Of course they are communicating with each other!!
Look at these female cones on my Douglas fir tree. They are kind of goofy looking with those bracts hanging out between the cone scales. They have the only cone like that in our nearby Rocky Mountains. The needles are strange too… they have little tiny stems on them like leaves.
I have a Douglas fir growing in my backyard where I have been babying it for a few years as the honey locust tree next door is outgrowing it and putting it into shade. Poor Douglas fir. They are kind of misfits in our mountains, having no other close relative, aren’t really fir trees at all, and are notorious for pulling a lot of water from the ground. When I attended a forestry workshop in the Denver montaine watershed I was told that the only good Doug is a dead Doug… hey, Dougs need love too! Some of the trees in that forest are turned to sawdust by enomous grinding machines to both thin the forest and reduce water use; some of those thinned trees are evidently Dougs. Douglas firs are really important timber trees, which is why they are in this book, but they aren’t beloved by the biologists who are making sure Denver has enough water in the coming year. Luckily for my Doug I am hiding it from the Denver water board and giving it all the water that it wants. Sadly, it is the only one around and has no other Doug tree to talk to. I wonder if the honey locust ever chats with it?
Have a great week, everyone!! Read a little, knit a little, and garden like your heart can’t live without it!
Okay, I just had to show off the monster orchid again. I feel happy every time I see this big guy. This is why it is good to garden. 🙂
I’m thinking of myself as the “Blue-Lipped Zebra” these days. Let’s just call me the BLZ for short. You know, a rare breed of difficult patient who is ornery, persistent, and stubbornly insistent on getting straight answers. I’m trying to not use that zebra voice, but if pushed I may whip it out. I’m going after all my doctors to get to some explanations about my panting, blue-lipped, exhausted current state of being. I made myself promise to keep my internal dialogue under control and to not get pulled off topic. Sounds like a good plan, right?
Whew. It is only Wednesday and I’m pooped! I have talked with or met with three different doctors and scheduled 5 different tests. I also made repeat appointments to get back to these doctors after the testing is done. I went into this determined to do a better job coordinating with my doctors and to shift the conductor role to my new rheumatologist. I’m reflecting on what’s happened so far and what my next steps are, and I’ve decided to share with all of you.
Before I tell you about my medical adventures this week I want to show off the monster orchid. It now has 5 blooms open and it looks great!! Isn’t that an amazing color?
Prologue:I have been struggling with shortness of breath, extreme fatigue, and feeling dizzy/faint. My lips frequently look blue. The itching is insane, and what is up with these rashes? I have more recently developed abdominal pain in the area of my spleen. After initial testing my internist has diagnosed secondary polycythemia.
Act 1: The Internist
This was my first phone appointment. My internist is the doctor who diagnosed me with secondary polycythemia, which is a condition with too many red blood cells. The high cell count, in my case, is now presumed to be due to an underlying problem involving my lungs or heart; since lung and heart damage is common with systemic sclerosis that makes a lot of sense. We talked about my gene test results (I do not have the genetic mutation that would have caused the more serious form of polycythemia, which is good!) and planned my call with the pulmonologist. That’s right: I got some coaching from my internist! I agreed to send her an email about what happened with the pulmonologist and rheumatologist after I met with them, and she assured me that she would order any testing that the other two doctors did not. That’s right – I asked her what testing I should ask for. I love this doctor!!
Act 2: The Pulmonologist
Well, this didn’t go the way I thought this would… good thing I got some coaching. It started out with this doctor saying that she didn’t know what I expected her to do over the phone when she hadn’t seen me in her office for over a year. (She fussed at me last time for coming earlier than a year. I tried to make an appointment, but the nurse insisted it would be better for me to make a phone appointment before I saw the rheumatologist… ugh!!) I explained the situation to her, and she immediately said that she didn’t agree with the diagnosis, and that she didn’t think that my rbc count was all that high. <The BLZ was pretty disgusted by this and wanted to blurt out that the diagnosis wasn’t open for debate, but I throttled it into silence…> After redirecting the conversation to my symptoms (you know, ending up on the floor panting for air after a little vacuuming…) she did agree that there was probably an underlying problem driving the elevated rbc count and it would be good to order up some tests before I came to see her in her office.
Sigh. Why is this so hard?! I wondered if we had just been talking at cross purposes about the same thing. <The BLZ wondered why I had to keep battling for routine testing when my diagnoses required it. Whatever.> The tests were ordered and I agreed to make an appointment to see her in her office a few days after the testing was completed.
Act 3: The Rheumatologist
Finally, finally I have landed in the rheumatologist office that the BLZ has longed for. This doctor felt that the lung testing was absolutely warranted, and that if nothing came up she would go right for a cardiologist referral and heart testing, and a hematology referral also if needed. She kind of thinks that this is my heart, but it is good to get the lung testing done first. <The BFZ is now bucking around… happy for action, but a little scared, too.> She reassured me that the tests that were already ordered were exactly the ones that she would have ordered, but they were just the opening round. She mentioned a test that the pulmonologist has refused to order, saying that it is the only way to get accurate information. Yay! Then she did the exam and reviewed the notes on my orthopedic referral since I still can’t walk and I’ve developed more tendon issues in my foot. “Why hasn’t there been a follow-up on this?” she asked. She ordered two MRIs to look at my hip and foot, and gave me the paperwork to get a handicapped parking pass. She also ordered blood work, told me to call her after the testing was done, and that I should be in her office again in 8 weeks. <The BFZ was stunned. Usually I’m told to come back in 6 months.> I have the scleroderma director that I’ve been looking for, people!!
Epilogue
I spent 5 hours over the last two days making phone calls, appointments, reading all of the medical notes attached this week’s appointments, and writing emails. Whew. Through the constraints of scheduling calendars I will be talking about my test results with the rheumatologist before I interact again with my slightly hostile pulmonologist. When I read the pulmonologist’s notes on our phone appointment it kind of smelled of “cover your ass” and the BLZ’s nostrils crinkled in disgust. After begging for inhaled steroids for a couple years, when I saw her last time she offered me a few months worth. Yay! I said. I wanted to check with the rheumatologist before starting them because I’m already pretty immunosuppressed, which I did, and the inhaled steroids were prescribed soon after by my internist and I’m using them right now. In the notes she wrote that she had recommended these steroids and I that I had refused. <The BLZ immediately noticed the nasty trickery with the verbs there…she offered and I deferred!> She also described my landing on the floor while vacuuming as “needing to rest while doing moderate tasks”. The BFZ is beyond disgusted at that. <Get a new pulmonologist, the BFZ barks!>
In between all of this I also got my newest pair of Snowshoe socks done! How cute are these? I knit them holding a wildly bright variegated yarn with a dark, inky blue single ply yarn. My yarn information is on my project page.
So, it was a pretty darn good start of the week. Tomorrow I head off to get an echocardiogram of my heart, and over the next week or so the rest of the testing will happen.
Coronavirus, be good and stay away from me!! I’m going to be in a lot of medical facilities for the next few days.
I haven’t been blogging all that much about my chronic conditions lately… the truth is, I hardly know what to say. I’m sick. I still struggle every day. I’ve been making a lot of adjustments over the last couple of years as I tackle never-ending obstacles, but I really don’t dwell on things too much and I don’t make too many demands of my doctors. I’m still happy, busy, and I manage work-arounds for lots of things that I want to do. Then suddenly this winter I realized that I wasn’t doing all that well after all.
Background: For several years I have been consistently complaining to my doctors that I am short of breath, fatigued, itching, rocking blue lips, and not quite right. My doctors are all like… hmm… that is interesting. Well, it isn’t (insert specific issue that this doctor treats me for), so I’m not sure what to do. We’ll keep monitoring… Maybe you should ask this other doctor about it…
This last December I really hit the wall. I was so exhausted that I was afraid to go shopping by myself. I ended up on the floor panting for air more than once. I collapsed in the yarn store. My lips were blue. The itching drove me crazy. Something in my side hurt and strange bruising kept popping up. Fainting suddenly became an issue again.
I spent most of December in bed reading books and knitting gnomes!
I went to my internist and told her what was up and she immediately ordered several tests. Some scary things like lymphoma were ruled out, but others suddenly reared their ugly heads. I have way too many red blood cells and too much hemoglobin. My cell count spiked to its highest last December when my symptoms were at their worst. Suddenly a new diagnosis was placed on my chart: polycythemia.
Now the fun really begins. I have a lot of things written on my chart. I am diagnosed with several autoimmune conditions: limited systemic sclerosis (scleroderma), Sjogren’s Disease, and fibromyalgia. These diseases come with a boat load of complications as they tend to cause trouble everywhere they go: I have stage 3 kidney disease, lung disease, hypertension, Raynaud’s Phenomenon, gastroparesis, tendon damage, bursitis, several crazy eye issues, fluid around my heart, and a stomach that has herniated partly into my chest. Seriously, who knew that was a thing? Actually, my whole GI tract is in trouble. My muscles hurt and the joints are swollen. Do you see how confusing treating me can be when a new medical problem emerges? No one wants to rock the boat! My diagnosed conditions actually make it harder for me to get good health care at this point. I know that I am a high risk patient, but this is ridiculous, doctor people!
My internist checked to see if I had the very serious and rare version of polycythemia called polycythemia vera, and since my hormone levels were normal she concluded that my polycythemia was being caused by an underlying condition, and we should just monitor my red blood cell count in ongoing routine rheumatology blood work.
What? Wait… what about my blue lips, panting and all the other symptoms? My immediate reaction was… OH, NO, WE ARE NOT DOING THAT!!! I am done with the ending up on the floor panting every time I try to do something reasonable like… say… cooking dinner! I dusted off the biological researcher part of my brain, generated a list of essential questions, and did a bunch of online searches to see what I could find. The trick to this is to have good questions and the right seach terms. As I worked, things became more productive. Wow. I learned a lot and now I had more questions for my internist. I wrote her back an email with a bulleted list of questions that… she never got. She’s on vacation. One of her partners looked at the email, became alarmed by my symptoms, and called to urge me to head to an ERimmediately (!!) to be evaluated. She was pretty insistent…
Which kind of proves my point! Anyone else who ended up on the floor with blue lips, panting for air, because she tried to vacuum the living room would receive timely medical intervention!! This is not reasonable. I’m not getting the care that I should because I am too complicated and there are too many doctors involved. This has been going on for three years and now it is worse. Did one of your parents ever say to you when you were a kid misbehaving in the backseat, “Don’t make me pull this car over!” I am now pulling the car over and stopping this ride.
This is kind of intense, huh. Let’s take a break to admire my favorite orchid!
Tonight as I write this I am just hours away from a phone appointment with my internist. I have my questions ready to go. In the afternoon I have another phone appointment with my pulmonologist; I plan to tell her about the new diagnosis and to ask her about testing that I should have to help identify the underlying cause of the polycythemia. Maybe she will have some other ideas. Tuesday morning I have an appointment with my new rheumatologist and I hope to pass all of this to her. This rheumatologist specializes in complicated cases, is recommended by the Scleroderma Foundation, and prefers to personally coordinate the entire care team. Yay! Here I come! I am the girl for her!
There are many things that are happening to me that are upsetting: my hair is falling out, I have a rash on my face, and I now use a cane to get around. This is the kind of stuff that makes you want to sigh and stay in bed some mornings. You wish it wasn’t happening to you. It’s upsetting.
Then there are things that are just down right concerning. In my mind a red flag pops up and a small siren goes off: strange and unexplained bruising, double vision, pain in my left side, blue lips, panting for air while trying to open a door, tremendous itching after showers. This kind of stuff is a call to action; get out of bed and deal with it! I am now mobilizing all of my energy towards GETTING TO THE BOTTOM OF THIS and securing answers, treatment, and hopefully, an improved quality of life.
Because there is a difference between upsetting and concerning. I am not upset, but I am concerned. I am mobilized. I have questions and I want answers.
I am totally over the blue lips look!
I’ll let you know how this all works out. It should be a busy week.
The local news station posted on Facebook this morning that there are only 300 days until Christmas. Why do they do this? Already, I am feeling the pressure and thinking about what I need to craft/knit/weave for this year’s Christmas. I did take out the spinning wheel this week and got organized to do some quilting. So much pressure if you are a fiber artist/crazy person…
Knitting
I had a busy knitting week. It was so busy, in fact, that I already did a little posting about what I was up to as I worked out the swatches to knit another cat to match my son’s kitten Jonesy and ended up dyeing some mohair yarn in a crockpot. If you missed it, here is that post.
Last night I took the swatches up to my son’s place to match them to the real thing: Jonesy.
They were a big hit; Jonesy thinks they are a new kick toy. They are also a good match, especially the color that I dyed to create his stripes.
I got back to work on my Pebble Tunic later on in the week. It doesn’t look like I made a lot of progress, but I have connected the front and back and am knitting down the body of the sweater making some increases as I go. It is all mindless knitting until I hit the pockets in another 10 inches of knitting or so.
This yarn is just wonderful to work with. My project notes on Ravelry are here.I also went back to simple knitting because… well, this is embarrassing… I snipped into my thumb with my scissors. My scleroderma hands sometimes misbehave, but this is just ridiculous!! Good thing I had a knitted finger protector on hand to hold the bandage in place and add protection.I’m also finishing up the second snowshoe sock being created at DK weight by holding a wild multicolored yarn from Western Sky Knits with a single ply inky colored MadTosh yarn. The project notes are here.
This is a bittersweet project to finish up. It is the last one that my sweet boy yarn chomped/supervised earlier this week. I’m so glad now that I let him eat all the cookies that he wanted, tolerated all his knitting help, held and babied him when I wanted to do other things, and switched him back to his favorite food for those last few weeks.
MacKenzie was always a lot of help. If you missed it, my boy left me this week and I blogged about it here.
Garden
The best part of orchid ownership has arrived: the orchids left the craft room with its grow lights and moved into the living room to strut their stuff to the general public. Okay, it is just me, but it makes me so happy to have them out on display.
The miniature orchid with its darker magenta blooms joined the rose gold orchid on the china cabinet. Do you like that funky unglazed orchid pot? I get them at my local nursery and the orchids really seem to like them.The Monster orchid is now on my coffee table where its lovely orange/pink bloom (there are more on the way) displays well with the plum furniture and the gold walls. Happy orchid, happy me!
Books
Well, I have settled into the most amazing book ever this week. I can’t believe how much I love this book. I bought it because Melinda of Knit Potion recommended it on her blog. Oh, my goodness!! I am so glad that she pointed this incredible book out to me.
<Disclaimer: I am a life long science geek and biologist. I didn’t always love plants, but now I drive people walking along with me crazy as I stop to take a good look at vegetation. I was thrilled when a slime mold emerged in the pot of one of my jade plants this summer. I’ve gone on workshops and field trips to forests, burn zones, and learned about the forest management strategies employed to maintain Denver’s watersheds. I think that it is absolutely reasonable to marvel over the mechanics of water movement through plants and the complexity of chloroplasts…>
I’m about a third of the way through the book, and so far it is a collection of stories about the interactions and meaningful relationships of different individuals with… trees! Sounds kind of strange and boring, but no, it is not! It is magical. I am hoping that the people catch up with each other to save the forest soon…
Here it is. I did take a break from the book and watched the movie Tolkien. Would you believe it – trees feature in this movie and Tolkien tells his kids to go talk to the trees. That’s it. Never underestimate the power of communing with trees…
Before you think that this is crazy, let me share with you a little tree story from my family. Starting her life over after tumultuous times and a painful divorce, my mother bought a trailer home and began to garden again. She grew amazing roses and boatloads of blackberries. She planted a tree. A Podocarpus Macrophilia tree, to be exact. She loved the tree, fed it, babied it, and eventually hung a bird feeder in its branches. She treasured this tree and it just thrived under her care. Mowing the lawn under the tree one day she began to realize that there was something wrong: abdominal and back pain. It was cancer. Years later, facing down her coming death she selected her burial plot and made all of her final decisions in a manner that serves as a pathway to me and all others who knew her. She chose a location with a beautiful view of the hills and canyons of San Diego, under a Podocarpus Macrophilia tree. The last time I saw her grave there were wind chimes and a small bird feeder hanging from the tree.
Never discount the importance of a tree.
Have a great week, everyone!! Read a little, knit a little, and garden like your heart can’t live without it.
I’m an orphan. I’m a zebra. I am rare. This is a club that is hard to get into because it has really specific criteria, but it also has lots and lots of members.
What, you say? Whatever is she talking about?
I’m talking about rare diseases! A rare disease is classified as one that impacts a small percentage of the total population. Here in the United States that means fewer than 200,000 people diagnosed with the condition/disease. Perversely, there are a lot of people with rare diseases as there are almost 7,000 different rare diseases! Some of these diseases are common enough that you may be familiar with them: albinism, achondroplasia (a type of dwarfism), and autoimmune hepatitis are examples. Others are very rare. Most are genetic in origin, and half of them impact children. More than 90% of rare conditions have no drug treatment. You can learn more about rare diseases in general and search for specific conditions/diseases in the links at the end of this post.
So, what is Rare Disease Day? The purpose of this day is to raise awareness of the many, many diseases that are classified as “rare” around the world. The hope is that by shining a light on these diseases, and to put a face on the people who struggle with the many rare conditions that are out there, there will be improvements in how these people are handled in the health care system, drug companies, funding agencies, and by the public.
I joined the rare disease club 5 years ago when I was diagnosed with systemic sclerosis, a serious form of scleroderma that has no cure, can be disabling, progressive, and often fatal. These last 5 years have certainly been eye-opening for me, and I believe that my experiences are shared by many others who struggle with rare diseases. Let me list some of my epiphanies during this journey:
People in general are dismissive of illnesses that they have never heard of before. If you are a person with a rare disease, it is almost a certainty that no one has heard of your disease. Oops. You just got written off as an attention-seeking hypochondriac by a person who hardly knows you because they never heard of your disease…
The health care industry is designed to treat people with common diseases, and often ignores, dismisses, or denigrates patients who don’t fit the normal profile: the zebras. It is really, really hard to get a diagnosis for some rare conditions (autoimmune diseases like mine are famous for this). If you have a rare disease, you are trying to make your way through a system that wasn’t designed to identify and treat you.
There is little incentive for drug companies to develop treatments that can only be used for a small patient population. That’s why there rarely is an effective treatment or cure. That’s also why drugs for rare diseases are called orphan drugs; another name for a rare disease is an orphan disease. Yep, I’m an orphan, but there are several drugs with orphan status in the development pipeline right now. I’m lucky that way; most orphan diseases have no drugs for treatment under development.
To be rare means you may be too risky to treat. Once you are diagnosed with an unusual health condition it actually interferes with your medical care; because you are complicated physicians are likely to dismiss or “just monitor” symptoms that would receive immediate attention in another patient. Without more experience they can’t be sure what is “normal” for you and/or if the treatment usually used for other patients might make things worse for you. There’s another whole blog post about this on the way!
It is really, really hard for people to wrap their heads around “chronic.” We almost all universally believe that people can get better if they just try. Attitude is everything, right? If you just took this supplement, started eating keto, got more exercise and sunshine, tried essential oils…
Closely associated to this belief in the general public is one that assigns blame to the ill for their disease. If you are sick it must be because you ate too much red meat, or are obese, or failed to exercise enough. You should have eaten organic!! I know that people do this because they want to believe that they are safe from a similar diagnosis, but it still adds to the burden of those dealing with a life off the mainstream, caused, not by their choices, but by an inherited flaw in their genes.
If all of this wasn’t enough, or maybe because of all of this, rare diseases are expensive and isolating. Resources are few. Support is hard to find. You feel alone. An orphan.
So, this is Rare Disease Day. Some people with rare diseases must share experiences like mine; many are far, far worse than my own. If you would like to learn more about rare diseases here are some resources:
Life has been good to me.The Mother of Cats has given me lots of pets, toys and cookies. Even though she didn’t always give me everything that I wanted, I know that she did the best she could.I once beat up the pit bull who lives next door…and I spent hours and hours out in my favorite shady spot waiting for wayward squirrels and birds…and I supervised lots of knitting projects for the Mother of Cats. Maybe there was a little yarn chomping on the side, but hey, I’m a cat!!
Today things got really bad for me again and the Mother of Cats held me tight as I slipped away to heaven. I’m on my way there now and I totally expect to have some cookies waiting for me when I get there!
This is MacKenzie, signing off.
>^..^<
Hurry up, Bro! I’ve got a garter snake all warmed up for you!! Just wait until you see how big the butterflies are here… There is a cat mint patch bigger than anything you’ve ever seen before, too!!
Yarn, Books & Roses 