The Scleroderma Chronicles: Updates from the Sclero Front

It’s spring here in Colorado. The first baby bunny appeared this week, and the plants in the yard are starting to burst out in green buds. The roses are looking like they are going to do really well this year (except for that one that the bunnies ate…) and there was a huge outbreak of my little bulb flowers in the front garden. I have new cushions for my patio swing, and I sit in the sunshine, reading and drinking my morning latte, every warm morning. On chilly mornings I wrap in a favorite shawl and stay out with the cats as long as I can. The first grasshoppers of the year have arrived for the cats to chase, and the air is filled with birdsong. There are even blue jays!! Good days.

The phlox in the front is looking great!

A couple of day have been so warm I couldn’t stay in the sunshine long and I’ve had to deploy the umbrella shade. Then, the next day, there may be snow. This is spring in Colorado: rapid changes and big temperature swings. The same is true for the barometric pressure; look at what happened this week.

My emotional stability has been a little like the air pressure the last couple of weeks as I’ve gone through a round of testing and doctor’s appointments. I was very upbeat when I went in to get my blood draw to check my iron levels, and the bone density scan last month was just routine. I mean, I’ve been feeling soooo much better: more energy, sleeping better, more mentally alert and even my appetite has improved. Suddenly my gut doesn’t hate me, and I am getting out of the house more. I went to my knitting group for the first time in months! I was positive that my test results would reflect the improvement.

Not so much. After weeks of eating iron-rich foods and downing my iron supplement there was absolutely no change in my test results, and in fact, the test that measures the concentration of hemoglobin in individual red blood cells (MCHC) got worse. Seriously? The only gain was one value of 25.5 that went up to 25.6; still too low. After all that red meat, salmon, iron pills, avocado, and spinach all I got was 0.1 improvement? Kind of disheartening as this means that I have to have some invasive testing to see if I’m bleeding in my stomach (it’s a scleroderma thing), and I don’t think my doctor will put it off much longer. (It’s called watermelon stomach) (fabulous) (of course this is rare) (my zebra self is not happy).

Then the bone density scan results arrived. I have somehow developed a fairly serious case of osteoporosis in a short time span; the report says to start immediate treatment. Then I did some googling and found out that the diuretic that I take can cause osteoporosis, and I absolutely shouldn’t have been taking it because I have a strong family history and I’m kind of high risk. (Of course I am) (I stopped the diuretic) (now my feet are swollen) (my zebra self is crying).

I have to be honest. I was kind of crushed by the bad news that I absolutely did not expect. Then I mentally slapped myself around, did my exercises, potted some lavender plants, and went shopping on Amazon for some cheer-me-up jewelry. Just what I needed to pull myself together. One day at a time, right? I already have more than my share of challenges, so I shouldn’t waste any energy on things that haven’t happened yet. Next week I have an appointment with my internist, and we’ll work out a treatment plan for the osteoporosis and next steps for the anemia. (I took another iron supplement) (my inner zebra has pulled itself together again) (the zebra wants to point out that its lips aren’t as blue as they used to be).

I also pulled out the La Prairie sweater and knit steadily through the sadness until the body came off the needles. Gosh. It looks really nice so far. Something has gone right this week…

Today I woke up to a snow/drizzle mixture that was too unwelcoming for even Mateo to go out on the catio. All my joints hurt, and my muscles weren’t sure if they were going to play nice either. Of course, I had to drive across town to get lung testing and a sit-down appointment with my pulmonologist to go over all my results. I put on my cute Weekender Crew sweater, wore my new “in your face, scleroderma!” jewelry, and headed off for the testing. It hurt to breath as I walked into the building. I convinced myself that it was just the cold air; after all, I feel pretty good, and I was overdue for some good news.

The lung testing specialist is now my friend. We laughed and talked and caught up as she got me ready for testing, and then I breezed through all the parts of the pulmonary function testing and the 6-minute walk test. Every single result was cause for celebration as Stephanie (my technician) became more and more excited with the little graphs and data appearing on the computer screen. “This is better!” she kept saying. By the last test she was practically jumping up and down with excitement. “This is great! This is great! she crowed as she walked me to the exam room to see my pulmonologist. “I’ll let him know that you are here.”

I love this pulmonologist. He is the doctor who first listened to me and picked up on the fact that I had a hole in my heart and pulmonary hypertension. He held my hand and told me I could cry when my interstitial lung disease was first diagnosed. He has always been the doctor who was most honest with me; he told me last year after the tide had turned that they hadn’t been sure I would make it a year. He supported me when I halted the anti-fibrotic drug due to quality-of-life concerns. Today he was all smiles as we went over the results and my exam. My lungs have maintained on the scans. I have regained some lung function. The decision to halt the drug was the right one; there is no obvious sign of fibrosis right now. This is the best possible outcome right now; everything that he hoped for. I was the last patient he saw today, and he was pleased to have such a good one. “Best appointment of the day!” he declared as he walked me out. We were both enclosed in a bubble of joyous happiness as we walked.

I took this picture outside the building.

Outside the clinic the parking lot was almost empty. The cold drizzle was steady, the sky was full of sad lumpy grey clouds, and the gloom of early evening was creeping in. Around the building some ornamental trees were just beginning to open their flower buds, but in the shelter of the courtyard on the south side, the sunniest location, one tree was covered in blooms. Kind of a metaphor for the last couple of weeks. Sit in the sunshine and bloom, no matter what is going on in the world around you.

On the drive home, in my mind, my zebra self was dancing for joy.

Hannah and the CoalBear: Reporting In

Hi. I’m Hannah.

I am the cutest girl ever!

This is just a fast check in to let you know what has been going on the last couple of weeks. First of all, I want to mention that the Mother of Cats has been going away in the car WAY TOO MUCH lately. I mean, she should always be here to play with me and WHAT IF I HAVE A TUNA EMERGENCY??? Seriously, she needs to take her responsibilities and duties a little more seriously.

Mateo would like me to mention that it has been snowing almost every single weekend this year. He no longer things that it is amusing. The Mother of Cats should do something about this, too.

The Mother of Cats has also been reading in bed (but I try to put a stop to that whenever I can) and knitting her little hats. This weekend she drove to her knitting group to turn in the hats that she has knitted this year to date: there are 16 of them!

The Mother of Cats also got six PICC line covers knitted; she donated them along with the hats on Saturday. She filled a big bin with shawls and socks and cowls that she doesn’t wear anymore and took that with her too; they were all donated to a refugee assistance organization. She’s happy to put the knitted stuff to good use, and I’m so happy to have an empty shelf in the closet to hide from Mateo on. The Mother of Cats even put a cat bed on the shelf for me to use. As long as Mateo doesn’t find my secret hiding spot, I’m going to have long naps without any annoying interference from that CoalBear!

We got cute little African violets for Valentine’s day along with a little pink zebra. Mateo thinks that the zebra is for him and he bunny kicks it, but I know that the zebra is really mine!!

Well, I think that’s all I have to share for now. I do want to mention that it is sunny most mornings of the week and I’m really enjoying sunshine again. It makes me shed! I just love getting combed with the grooming brush. Mateo, not so much!

I look a little like the cat quilt on the wall behind me…

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats:

  • The pattern for the hats is Barley DK by Tin Can Knits.
  • I knit for Frayed Knots, a Denver-area community knitting group. These wonderful ladies also provide services to the homeless/refugee communities in our area along with the many items produced for local hospitals and cancer centers.
  • I’m making the rounds to doctors again and getting testing done. I’m still really struggling with fatigue, pain, and shortness of breath; my lips are bluer than ever. Initial testing results show that I’ve developed anemia. It is an unusual type; I have enough red blood cells, but they are too small and don’t have enough hemoglobin. Next up… more testing!
  • No wonder I’m always exhausted!

Hannah and the ColeBear: Caturday Soup Saga

Hi. I’m Mateo.

I also go by the name CoalBear. Hannah calls me some other names that I guess I shouldn’t share here. Mostly that happens when I slash her heels…

So, what do you want to hear about first. The Mother of Cat’s knitting, the soup that she made this weekend, or… my fabulous new toy?

This little birdy toy chirps!!!

The Chewy box came this morning, and that little bird was in it! I knew that something was up because the box was chirping before the Mother of Cats got it cut open. Then she took the toy out… wow… I had to spend some time figuring out if it was going to jump at me, and then I started carrying it all around the house. Seriously, this was so exciting that I wasn’t even able to eat breakfast!!!! Everyone should have a chirpy bird!!!!

Hannah is like… whatever. She is so weird sometimes.

Hannah: Excuse me? I was busy with the TUNA!!!

So, I guess that I should mention the knitting that has been happening this week before we get to the main course, the soup! The Mother of Cats finished her Alpine Bloom hat this week, blocked it, and then tried it on.

Hannah: This is a nice Hannah warmer, don’t you think?

Yeah. The hat is too big for the Mother of Cat’s head. She sent a picture to everyone in her family and this hat will be heading off to New York to keep one of her cousins warm this winter. She has some ideas about how to adjust the pattern to get the hat smaller, but she just parked them at the back of the bus for now and started knitting away on her La Prairie sweater instead.

Mateo: don’t you like how I’ve decorated the knitting with some of my cat hairs? This knitting is kind of stressful, so I’ve been hanging out a lot with her.

Alright, let talk about the soup. This has been a source of commotion for days. It all started when the Mother of Cats brought home this goofy squash and told us that she was going to make soup out of it. Hannah was like… can I have some tuna? I mean, the squash was parked right next to our cat food, but somehow the Mother of Cats didn’t pick up on Hannah’s hints that she needed some more tuna! Or Cookies!!

Behold the squash!

This squash caused lots of trouble this week. First the Mother of Cats had to buy a new peeler to use with the squash. She ordered it from Amazon, and the package got lost. So, she had to go to the store to get another peeler. She also bought a crock pot while she was there. Then she bought an immersion blender on Amazon. Hannah and I were going crazy playing in the boxes and chasing each other today while the Mother of Cats peeled, chopped, cooked, blended, and made the soup.

Perhaps this is the most expensive Autumn Squash Soup ever made. The Mother of Cats likes it, so I guess that’s good, even if it smells pretty nasty to me. She’s eaten two bowls, and she still has two quarts in the fridge.

Well, that’s all for now. I need to go find my chirpy bird toy.

This is the CoalBear, signing off.

Notes from the Mother of Cats:

  • I have enough yarn left over to make another Alpine Bloom hat and I plan to go down a needle size to make it a little smaller. I also have in mind trying out knitting the hat in fingering yarn using the smaller sized needles.
  • The La Prairie pattern is full of new skills to master. The pattern includes instructions on how to knit the tiny cables without a cable needle (Yay!), and how to knit the bobbles in a new way to me. This is not a sweater that you can take to the movies while knitting as it requires focused attention!
  • Now, the soup. My latest blood tests came in showing that I have developed a type of anemia. A less common type, of course. Never mind, my doctor wants me to try to get more iron into my diet, so I’m trying to add more iron rich food to my diet (like squash), but I also need to try to maximize my ability to digest the food and absorb the nutrients. Hence the new, medium sized crock pot and the much safer for me to handle immersion blender.
  • Here’s the recipe for the soup that I made today. Copycat Panera Autumn Squash Soup by A Simple Palate. This was really yummy; I added Thai green curry paste to mine.
  • That squash is a butternut squash in case you didn’t instantly recognize it.
  • What is this less common type of anemia, you ask? It’s an anemia of chronic disease with red blood cells that don’t have enough hemoglobin in them. As in, I have enough red blood cells, but they are not packing enough hemoglobin to do the job even though I have iron levels that are within normal limits. Squash, as it turns out, is a good source of iron.
  • The little African violet that my sister sent me for my birthday is still blooming!