The Saturday Update: Week 26

Week 26?! Do you realize that we are now at the halfway point for the year? I don’t know about you, but 2020 has been just horrendous so far. I do hope that it decides to straighten up and fly right for the second part of the year…

There has been a lot going on for me this week, but I think that I will just start out with the Hannah update. Hannah, who is almost certainly the last kitten that I will raise, is turning out to be the perfect mix of all the cats I have loved in the past. She is affectionate and attached to me, easy to distract and train, smart, talkative, and fearless. She ignores the plants and hasn’t gone after my knitting all week!!

She is particularly fond of little stuffed toys that she can fling around and carry from room to room in her mouth. 

Okay, it isn’t all sunshine and roses. She climbs into the refrigerator and dishwasher every time I open them.  She started climbing the screen door and curtains today. She pestered me to wake up this morning because she wanted me to turn off the oxygen machine so she could play downstairs… I’m hoping that that doesn’t turn into a thing! Still, I am so happy to have my little buddy now that it appears that Covid-19 won’t be going away any time soon in my part of the world.

Knitting

I’m making some progress on my socks! The first sock is done, and now I’m cruising through the second sock. I’m focusing on small projects that I can quickly stuff into a project bag because… kitten!!

Look at how much progress I’ve made!
I really like the way the knitted fabic looks!

I love the stripes so much that I’ve been daydreaming and trying to work out how to knit tipless gloves by adapting my usual fingerless mitt pattern to put on the half fingers. Wanting to maximize the amount of leftover yarn I dug through the stash and located the purple yarn that I’m using for the heel and toe portions of the socks. I’m pretty pleased with the look, and now I’m wondering how to incorporate the purple into the gloves. My Ravelry notes are here.

Garden

The week has been one of gloomy afternoons and thunderstorms. Luckily I haven’t had damaging wind or hail, and the roses continue to strut their stuff. My Princess Alexandra of Kent rose in particular continues to shine.

This rose is a David Austin English rose and I keep thinking that I should get some more. My neighbors and I fixed the fences this summer, so maybe those new fences should have some climbing roses planted near them. Something to think about. I really like yellow roses…
Books

I finished The Mirror & The Light this week. I hardly know what to say. This is a rich, rich book that will continue to haunt me in the weeks to come and I may need to read the entire Wolf Hall trilogy again. Maybe it is because I am entering my fourth month of isolation, and I have lots of time on my hands to reflect on things, but the richness of the characters and the subtle connections of the past to the present as the story plays out, but never really ends, are just astounding. Cromwell ponders on how images painted in the past bleed through new paint to show in the present as he remembers violent actions in his past.  Memories of his years as a soldier rise as he marches into meetings and dinners. Near the end of his life, imprisoned in the Tower of London, he recaptures that transformative moment, broken and bloodied in the street, when he abandoned his childhood to launch on the path to who he was now. At the start of this book one of the standout lines is, “if you cannot speak truth at a beheading, when can you speak it?” At Cromwell’s own beheading there is a sense of truth and transition again; I was dreading the end of the book, but you know what, it was actually hopeful and a befitting closure to a great life.

After a book like that, what next? Science fiction, of course! I launched right into a fun little space military opera that is a three book series and I’m happily working my way through it.

There are a number of characters who are slowly being developed and connected as the story line progresses. There was a war. One planet lost. The losers are suffering under harsh peace treaty stipulations. There is some type of rebellion brewing. I sniff corporate greed and political machinations on the horizon. Must keep reading…
Quilting

Look at this! A new category just appeared again. This week has been kind of tough on me joint-wise, and I have finally made myself admit that I need to lay off the knitting for a while. Okay, my joints are really kicking up a fuss, and my shoulder is the biggest complainer. Sigh. It’s like all of the tendons and ligaments are under attack at once, and my drugs aren’t keeping up any more. I’m already on a lot of drugs, and in the world of Covid I’m fearful of getting steroid injections into the worse joint complainers because it increases my immunosuppressive load. Scleroderma, you need to behave yourself!! Anyway, I need to lay off the knitting, so I dived into my endless stash of “projects that I want to make someday” and…. pulled out a really cute art quilt!

This is the first block of an eight block quilt. 

This is the first block to build “Calling Me Home” by McKenna Ryan. The picture is built by tracing the pattern onto little bits of fabric that are then fused together. No sewing at all until I get the whole quite top put together. I’m thinking that my shoulder can handle this…

All of these little bits of fabric, to be exact.

It’s like an adventure! All I have to do is figure out which little fabric bit goes with what. Luckily I have that picture to help guide me. This is going to be a little like building a jigsaw puzzle! I hope that Hannah behaves herself while I’m cutting all of the pieces out.

Have a great week, everyone!!

Read a little, knit a little, and garden like your heart can’t live without it.

The Scleroderma Chronicles: The Blue-Lipped Zebra Goes On Oxygen

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:

    • My lungs are scarred and I have interstitial lung disease, a type of restrictive lung disease. I am stable and haven’t gotten worse when compared to the last testing two years ago.
    • 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.

You all be safe out there!!

The Scleroderma Chronicles: The Blue-Lipped Zebra gets some MRIs

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!

Be safe everyone!

The Saturday Update: Week 10

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. 🙂

The Scleroderma: The Blue-Lipped Zebra Report!

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.

You all be safe out there!

The Scleroderma Chronicles: Upsetting vs. Concerning

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 ER immediately (!!) 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.

MacKenzie Speaks: Crutches, Mountains, and Squirrels

Hi. I’m MacKenzie.

Do you see this ball of yarn? This is my most favorite yarn at the moment. So soft. So nice to cuddle with. The little flecks of color are my favorite.

The Mother of Cats has been somewhat difficult to work with lately. She has been limping all around the house, and yesterday her physical therapist finally told her she needs to use crutches for the next few weeks. HER CRUTCHES KEEP GETTING IN MY WAY!!! What is up with that? She doesn’t go outside as much as she used to, and she started knitting this simple sweater with just one color of yarn instead of the Koivua sweater that I just love.  There are more colors to chomp in the Koivua, and it is now so big she can’t keep me off of it while she knits. Is she working on the sweater that I can sleep on while she works? No! She is not!! She says knitting with the one color is easier to stuff into a bag to haul around with crutches. Whatever. What is up with the Mother of Cats? A little adversity and she totally folds: I’m so disappointed with her!

Except I do really like this new yarn so I’m starting to forgive her for putting the Koivua into time out. This sweater is called “Climb Every Mountain.”  What is a mountain?

Today the Mother of Cats finally let me go outside while she took pictures of all of her knitting and we watered all of the outside flowers.

Look at what happened to the blooms on the hydrangea plant over the last few days of cool weather. The flowers have turned pink again! The Mother of Cats was really happy to see the flowers. I was like… meh… laters… I have to go have a chat with that squirrel…

While I was chasing the squirrel around the yard she took these pictures of the new sweater. It is starting to look pretty good, isn’t it? It is kind of nice to sleep on…

She is now below the sleeves and getting ready to use her last ball of yarn.
Oh, yeah. Look at the new stitch markers that she made to use while making this sweater. How cute are these? She should use these to play with me!!

Now it is late in the afternoon, the squirrel has left to do whatever squirrels do, and the Mother of Cats, the crutches,  and I are back in the house. I just got some yummy salmon to eat and the Mother of Cats is getting ready to knit again. Hmm… that new sweater is getting pretty big now. Maybe I can sleep on part of it while she is working. I’m so handsome and the yarn really looks nice next to my fur. Maybe she will be reasonable for once and will let me do that. IF she loves me I will get a quality nap on yummy yarn.

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

  • The sweater is Climb Every Mountain by Heidi Kirrmaier. That yarn that MacKenzie loves is Tweed DK by Western Sky Knits, and it really is nice to work with. My Ravelry notes are here.
  • How ironic is it that I’m knitting a sweater called “Climb Every Mountain” while trying to master walking with one crutch?
  • The hip has become even more challenging. I met with the physical therapist yesterday who had printed out the notes from the hip specialist that I met with last month. Things are worse than I realized. I have IT band syndrome, inflamed tendons associated with my hip adductors, and then there is the severe hip bursitis.  I need to rest the tendons as much as possible as I stretch the IT band and use the topical anti-inflammatory gel that we hope will get the swelling down. Since I can’t walk without limping and the adductors need a rest I’m on crutches for the next three weeks at a minimum. I’m truly a mess as I can’t use a cane (bad wrists), ice (thank you, Raynaud’s), or work in a pool (Sjogren’s, I really hate you right now), so things are challenging, but I’m really motivated since I want to stay mobile as long as possible and I’m a poor candidate for a hip replacement.
  • MacKenzie is learning to stay out of the way of the crutches, but he is taking the whole thing personally. Poor thing. I have started giving him more cookies… I have NOT surrendered any of the sweaters to him.
  • Koivua  is waiting for the first snow fall as I rush to finish two transitional sweaters. Winter, take your time…

    Napping MacKenzie_web
    Finally!!

Knitting Speed Bump

A few weeks ago I went to see my primary care physician for help with shortness of breath and joint pain. I totally scored! I walked out of there with a tetanus shot (fail), inhaled steroids to control my small airway disease (win) and an anti-inflammatory gel to put on my swollen, painful joints (huge win). What a difference to my life these new medications have made. I can breath! I can walk without pain! I can sleep through the night! This is huge, people. Take that Sjogren’s and scleroderma! Feeling so much better I began to spend more hours up and about, and there was a lot more knitting happening too.

I got some socks finished right up. Here are my project notes.
I made a lot of progress on my Suburban wrap and was lured into knitting more than usual because I just had to get into the next section of the wrap. This is such a fun project with lots of color, texture and lace interest. So addictive. So hard to walk away from…

Oops. Then this happened.

Tendonitis!

One of the problems of getting better is that swelling is going down and the tissue is tightening up on some of my joints. My knees are really tight. My wrists are stiff. When I knit my joints loosen, so I thought I was helping them stay flexible. That is probably true to a certain point, but I guess I now need to be careful to not overdo things. Sigh. I am using the tendons in my left hand the most since I knit continental, and I push the yarn over the needle with my middle finger for each purl stitch. I’m really fast that way, but my tendons have totally rebelled in my left hand and wrist.  To make things worse I can’t take NSAIDS or any other anti-inflammatory drug because of my scleroderma-battered kidneys and stomach. Sigh. My doctor ordered a knitting hiatus.

I want to be a compliant patient, really I do. I read a couple of books, managed to get through a couple of days without knitting, and then I snapped. I must knit!! Want knit now!! Knit, knit, knit. Why go on if I can’t knit? Sniff. Obviously this is totally unacceptable and I am going to figure out how to knit in spite of this bad boy wrist. Really, my left hand is the one having trouble, so maybe I can work around that. I tried to tension the yarn in lots of creative ways before I remembered that lots of people on the planet hold the yarn in their right hands. English knitting. I have never mastered purling English style, but now I’m really motivated!

I was in the last striped section of the wrap when disaster struck; stockinette means I have to purl back every other row. 
I managed to continental knit with the brace on (okay, it is a little loose) and am moving my left hand very little by working slowly and relying on my right hand.
Working very slowly I am also managing to purl back English style. So slow. So awkward. So much safer for babying rebellious tentons.

Last night I finished the stripes and am ready to enter the last section of garter eyelet. Yay. Knit all the way! I can do this! Then it is into the last, ribbed section of the wrap.

Ribbing. That is going to be slow going. I think that I will check out Norwegian purling. Somehow I need to do this without moving my fingers too much. Yay. A new stitch to learn.

I’m on it!

Take that, scleroderma. You are messing with the wrong knitter!!

The Scleroderma Chronicles: Safe House

You know, I kind of view myself as a happy camper. I have more things (ahem… knitting projects) going then I can get finished on any given day or week, books lined up to read, and a “to-do” list that I’m slowly working my way through. Hey, people, I fixed the loose tiles on my kitchen floor last week!! My cat MacKenzie is my constant sidekick throughout the day as I knit, work in the garden, read in bed, and even with me (underfoot, demanding cookies) while I’m cooking. Even on the bad days when I’m pretty much down for the count, I manage small victories. There is just one problem with this picture.

Look at these beautiful coneflowers I just added to the garden. I’m hoping to lure some butterflies into the yard. Every garden should have butterflies, don’t you think?

I just don’t fit in the world all that well anymore. In my home, living the life that I’ve created for myself, it is really easy to forget how much I have adapted to accommodate the limitations of my scleroderma, Sjogren’s, and fibromyalgia. Once I go anywhere else reality hits me hard. Every trip out of my house is going to come at a cost. Here are the worst of the offenders that will lay me low.

Air Conditioning I know that almost everyone in the world is grateful for air conditioning in the summertime, but for me it is a royal nightmare. The shock of walking into a refrigerated building on a hot summer day will trigger an immediate Raynaud’s attack. I pull on long sleeves and fingerless mitts as soon as I get into the building, but my lungs know what’s up and I have trouble breathing. The airflow makes my eyes burn; I’ve been reduced to wearing my sunglasses indoors to protect my eyes. Don’t even get me started on the refrigerated cases churning out cold air; you haven’t lived until you’ve had to pull up the hood of your sweatshirt and the sleeves down over your hands so you can score some butter and eggs.  If that wasn’t enough, there are also usually…

Scented Products Almost all buildings use scented cleaning products and sells additional items with scents. Candles. Lotions. Laundry soap. The scented bathrooms are a nightmare. If I’m not already in trouble with my breathing I will be if I have to walk down the laundry detergent aisle at the grocery store: I also start to itch and my face swells. Why do these chemicals even exist? They can’t be good for anyone!

Restaurants These are a special kind of hell for me. All the drinks come cold and with ice, and the entrees are served piping hot. There are other landmines that I need to avoid: salt, lactose, fiber.  I have to carefully select something that is very soft and that will behave itself in my gastroparesis stomach. I can’t have spicy food. I can’t eat fresh veggies. Actually, to be safe, some of this food should go through a blender… I actually once soaked a cut up sandwich in soup so I could eat it…

Walking I am trying really hard to meet my walking goals every day, but I stretch those steps out over the day. A trip to run errands can be just exhausting if I’m on my feet for a couple of hours at a time. I need to always carry water, be aware of the location of bathrooms, and have places where I can sit down if I need to.

Sunshine It makes me sick! Enough said.

Ready for another picture? These paper wasps are building a nest right on the edge of my deck! MacKenzie and I are not amused. Still, it kind of shows how the outside world is full of dangers…

Recently I had a tough talk with myself about pruning down my outings and being more strategic about how I expend my energy. I need fewer outings, and my destinations need to be closer to home. I need to live online. I need to in a safe environment as much as I can to manage my diseases.

My home is my safe house. I have no air conditioning and I minimize air flow. I keep the temperature in the mid 70’s in the day so that my joints and lungs will be happy. I cook all of my own food, I don’t own any salt at all, and everything that I drink is room temperature. Fruits and veggies go through the blender to become smoothies. Every product that comes into the house is scent free. I’m always close to a bathroom or a soft surface to crash onto for a quick recovery if I get dizzy. My stairs have wrought iron rails that I use effectively on bad joint days. Flourishing in my safe house I sometimes forget how sick I am because, well, I have fewer problems.

I planted this yarrow last year in a flowerbed that has killed almost everything planted into it. Not this yarrow!! The secret of gardening, and living with serious chronic illness, is to keep on trying new things, and to match your needs to your environment. Or, in my case, make your environment match your needs.

Tomorrow I have a doctor’s appointment so I listed up some symptoms and issues that I need to ask her about. It is quite a list now that I look at it, and it kind of underscores how chronic illness can trick you into thinking that things that would normally send you screaming into urgent care are “just another day of scleroderma.” Shortness of breath is an almost daily thing. When I glance into the mirror these days I sometimes notice that my face is blue. One hip keeps failing me; okay, I actually have to lift that leg to get into the car. My joints swell so much that I can’t sleep at night.

But I am good, here in my little safe house with my gardens and cat.

Tomorrow my doctor and I will attack some of these scleroderma/Sjogren’s issues. I kind of think that lung testing and a MRI of my hip are in the future, and that there may be follow-up with my pulmonologist. I’ve been gathering up my energy in preparation for these outings into a world that is dangerous for me, knowing that after each outing my garden swing, knitting and latest book will be waiting for me. With a room temperature ice tea.

And a cat!

It is good to have a safe house.

The Scleroderma Chronicles: World Scleroderma Day

Today is World Scleroderma Day. Tonight the Niagara Falls will be illuminated blue and white in recognition of the day. All this month (June) there have been walks and outreach to raise awareness of this disease and to raise money for scleroderma research, and scleroderma patients all over the world have been urged to post pictures of their faces (and smiles) to made this disease more real and relatable.

Rather than flash my smile I have chosen to show this picture of me and MacKenzie, wrapped in handknits, fighting my way through a flare one frozen January. Good times! See the light in the background? It reminds me that every flare comes to an end.

The purpose of this day is to try to raise awareness of an illness that is mostly invisible and relatively unknown.

So what is scleroderma? It is a rare autoimmune disease that is a member of the rheumatic diseases family. The name “scleroderma” means hard (sclero) skin (derma), which is the most visible symptom. Scleroderma is the general name that is applied to a group of connective tissue diseases that may target only the skin, or the skin plus internal organs, or just the internal organs themselves. The words that are used to describe my type of scleroderma (limited systemic sclerosis) are rare, chronic, progressive, disabling, and possibly life threatening. This is a lot to wrap one’s head around, so I’ve decided to break it down.

Rare: Here in the United States the CDC has defined a disease with fewer than 200,000 patients as “rare”. Systemic sclerosis, with about 1-2 diagnosed people for every 100,000 citizens fits the bill. To be rare means your illness struggles for research and treatment funding as the patient population is small and almost no one is personally impacted by the disease in the general population. Hence, Scleroderma Awareness Month and World Scleroderma Day. Thank you, Niagara Falls!!

Auto-Immune Disease: The immune system, designed to protect us from foreign invaders like pathogens,  is attacking some of the components of normal cells in scleroderma patients. The exact components can be identified using the antibodies of scleroderma patients and they are essential proteins found in the nucleus of the cell. My antibodies are attacking a protein found at the kinetochore of dividing chromosomes. I can’t help but wonder what the heck has happened here that I ended up with antibodies like these? I also eventually wondered if my cancer risk is increased since there is something off with this critical structure used in cell division (it is).

Connective Tissue: I used to try to explain this type of tissue to my AP Biology students. Connective tissue… well… it connects. It is what holds your bones together to form the skeleton. It gives support and stretchiness to your skin. It is involved in all the organs of your body, and holds the organs in systems together. It is essential to organize your muscles. In systemic sclerosis, all of this tissue can be involved in an inflammatory attack of the immune system and scarring occurs. Skin gets thick; hands curl, joints won’t bend, smiles  twist and faces harden. Muscles and joints hurt. The smooth muscle in the digestive tract can be so damaged that organs don’t work right. Blood vessels are damaged and spasm, cutting off circulation to extremities and organs. The heart can get scarred. Scarred lungs prevent oxygen passage. Scleroderma, invisible to the outside viewer, can be devastating to the patient.

Vascular tissue damage causes circulation loss to my fingers and toes (Raynaud’s Phenomenon) which I fight by wearing fingerless mitts and wool socks. Works great and the Zen of knitting brings its own benefits.

Chronic: There is no cure, and it never ends. There are, however, treatments for individual impacted organs that are really helpful.

Progessive: Damage accumulates over time and conditions worsen. My doctors are monitoring my kidneys, heart, lungs and GI system. So far I am doing pretty well, but my GI tract is taking the most damage.

Disabling: Yep. It is getting really hard to walk, and I just don’t fit all that well into the world anymore since my diet is very restrictive, air conditioning isn’t my friend, and sunshine makes me go into a flare. Right now I don’t need supplemental oxygen, but if that comes back it will further restrict my independence.

Life-threatening: It took me months to think this one through, but eventually I did google “life expectancy of systemic sclerosis” and discovered that for me, with my treatment plan and risk factors, survival rate is about 75% for 10 years after diagnosis. Overall the death rate of scleroderma is 50%. Oh. Now I know. Who wants to live forever?

This week I wrote a letter to my congressman asking him to sponsor a bill that would fund research into fibrotic diseases like scleroderma and cystic fibrosis. I haven’t heard back, but maybe if he has heard of one of these diseases or knows someone impacted by scleroderma he will do it.

That’s why we do World Scleroderma Day.