Trail of Crumbs

I have been struggling for weeks and weeks now. I had the flu not long after Christmas and it just never completely went away. I have a pain in my chest, a cough, fatigue, and I just run out of air more easily than I should. Seriously. I have trouble talking and breathing at the same time if I come up the stairs at home. This isn’t reasonable. I was having trouble climbing stairs before I got sick, but now things are ridiculous!

This is the joy of life with a serious chronic illness. There are so many little symptoms and problems it is hard to know what’s important and what is just another day of systemic sclerosis. I tend to wait out symptoms for a couple of weeks before I contact a doctor; then I’m at the mercy of waiting for lab results and a call back. Ugh! Things drag on for days and weeks as I process through my medical team asking them to find out what is wrong with me.

Cat
Mom stays in bed all day reading mystery books that feature a librarian and a giant Maine coon cat. What is up with that?

For two months I have been bouncing back and forth between my rheumatologist and my internist. My rheumatologist has been concerned that my heart is misbehaving (and sends me on to the internist), and the internist suspects that my lungs are to blame (and refers me back to the rheumatologist). It’s like following a trail of crumbs hunting for answers to an ill-formed question. No test result provided a clear diagnosis.

Except I can’t breathe, and it seems to be getting worse.

Two weeks ago on my way home from my weekly knitting group I was hit with a surge of assertive self-determination. Time to stop acting like a victim, I told myself. Instead of going home I drove for another hour north and requested a full copy of all my medical reports from the hospital where my pulmonary function and echocardiogram tests were done. I knitted on my shawl in the lobby while waiting for the reports, and then took them home with me in my knitting bag.

Shawl
Look at this shawl! I’m through the first section of short row lace. This is the Waiting for Rain shawl by Sylvia Bo Bilvia.

I am a lucky, lucky woman. I have a molecular biology degree and I once worked in a rheumatology research lab. I taught advanced placement biology for years and I know a lot more anatomy and physiology then the average patient with my condition. I should be able to follow the trail of crumbs within the stack of medical records, I reasoned. I laid out the lab reports in sequence, looked for patterns of change in my lung and heart test results, and took to the internet to understand what strange acronyms meant. I found a presentation that explained pulmonary function tests. Well, dang. Even though the summary notes from the physicians who interpreted my lab test used words like mild, early, and upper range of normal, it was clear to me that my lungs were getting worse over time. Maybe a lot worse.

I emailed my rheumatologist a note telling him that I had picked up up my tests and saw that my results suggested early interstitial lung disease (the summary of the latest test). I reminded him of my symptoms and asked about next steps for me in addressing/diagnosing my ongoing problems. Here’s the deal: an email is part of my official medical record. More than a phone call, it should provoke a response.

Oh, it did! I received a call within an hour from his office. In the next week I had two phone conferences, another echocardiogram, and a referral to a pulmonologist. I was able to refer to specific data in all of my conversations with my doctors. I got a prescription for a badly needed rescue inhaler. Finally! Forward progress!!

Yesterday I saw the pulmonologist. It was a beautiful warm day and a perfect drive through the countryside to get there. What a wonderful, wonderful doctor! She made it clear that I am not over-reacting, I do need better coordination of my health care, and she will be a warrior for me. I wanted to hug her. Here’s what happened during the visit:

I do have interstitial lung disease, and it is serious; almost 20% of my lung volume is already gone. This is bad news because it happened while I was receiving drugs to treat the systemic sclerosis. I will be completing more tests over the next week to nail down the diagnosis, but there is already so much damage that she will coordinate immediately with my rheumatologist about treatment options; she sent him the message while I was still in the office. I think that I will be seeing more/different meds in the near future. I may be going on oxygen overnight. I hope that I don’t have to do IV infusions. I have been referred to palliative care and will be receiving a case manager to help me locate resources and to coordinate my ongoing care with the medical team. I plan to ask the case manager if I should be referred to a scleroderma specialist at the University of Colorado, but I totally want to keep this pulmonologist!!

After so much time trying to get some answers/help the response was actually overwhelming. I came home and for the first time since I was diagnosed I cried.

Welcome Bear
The front yard “welcome bear” could still be seen between snow drifts when I went out to shovel. Cute, huh!

Today I woke up to a full-blown blizzard; howling wind and almost 2 feet of snow! I didn’t get any calls about medical appointments and I certainly didn’t make any. I knitted, shoveled snow (slowly!) and enjoyed the break from the immediate crisis. I started the next book in my mystery series. I worked some more on my shawl; it is going to be beautiful.  My roses are safely enveloped in an insulating three foot drift of snow.  I was able to successfully advocate for myself and secure medical treatment. Tomorrow the sun will be back out and I will start scheduling appointments.

This is not the journey that I would have chosen for myself, but I will travel it as well as I can, knitting, reading and tending my roses all the way.

Life is good.

 

Return to Reading: Three Good Books

I am just nuts about books. I have been, and always will be, a voracious reader who hoards and treasures books. I have multiple copies of my very favorite books so that no matter what happens, I will always have them. (My most collected books so far: Great Maria and Floating Worlds, both by Cecelia Holland.) I can’t imagine going through a day without reading. I have books stacked up in a reading queue and more on hold at the library. I am a reader.

Except that suddenly stopped this spring. Around the time my rheumatologist moved me to stronger drugs I realized that I was having a lot of trouble with vocab recall and speech, and I was really struggling to read. Maybe I just needed a better book, I thought, and kept prowling book stores and the library hunting for that illusive great read. It just didn’t matter; no matter what the book was my mind just skittered around and refused to engage in the story. A book that would usually take a few days to read dragged on for a couple of weeks; by the time I finished it I couldn’t remember what it was about. Crazy. Thank you scleroderma!!

Last month I scored a form of CellCept that would play nice with my digestive system and finally settled into a consistent drug regimen. I think that it actually takes weeks (and months) for the full benefit of these immunosuppressant drugs, but this month I have actually finished three (pretty darn good) books, and the last one I raced through in just a few days. OK, the drug is also causing some sleep disruption, but I’m finally reading again!! Woohoo! Here are the books of October:

stuff
MacKenzie is my reading companion. 🙂

The Girl in the Spider’s Web by David Lagercrantz

This book is a continuation of the Millennium series by the deceased Stieg Larsson. Oh, my goodness. Lisbeth Salander and Mikael Blomkvist are back. If you aren’t already familiar with these characters, let me just say that Blomkvist is an investigative reporter who is the champion of truth, loyal to his friends, famous for huge exposés, and sometimes hauled into court. Salander is… well, she is different. She’s brilliant, a computer hacker extraordinaire, a survivor, a champion, and probably a sociopath. She is broken, and she if fabulous. This book brings back the flavor of the previous books with the same intricate plotting; a murder, a conspiracy, convoluted electronic trickery, and the pace of a perfect thriller. I don’t think that it was quite as dark as Larsson’s books, but it was still a really good read.

The Narrow Road to the Deep North by Richard Flanagan

Sometimes a book is more of an experience than a story. OK, did I mention that I’m having vocab recall and brain fog issues? Reading this book just messed with my head but was so amazing that I kept going. The story unpacks in bits and pieces back and forth in time as we learn about the life of Dorrigo Evans, an Australian doctor of the last century. Dorrigo falls in love, goes to war, survives the horrific ordeal of building a railroad in the jungle as a Japanese prisoner of war, becomes a famous war hero, marries, has children, and carries a book of Japanese death poems. It is a magical story of love, guilt, endurance, survival, betrayal, and endless charges ahead in the face of impossible odds. I’m not completely sure that I understand this book, but it haunts me still.

The Bone Clocks by David Mitchell

The Narrow Road just warmed me up for this one. Once again I was reading a rich and complex novel that centered on the life of one anchoring character, Holly Sykes. The plot is broken into 6 segments that move forward in time (thank you, Mr. Mitchell!) but also loop and reconnect to characters and events in the other sections. Holly is extraordinary in that she hears voices and has accurate premonitions; the plot deals with these supernatural elements but also builds rich characters and situations that kind of left me stunned. It was with this book that I realized that I was once again a reader. I was immersed in the story, drawn to the characters, and caught off guard by twists and turns in the plots. This book had several story threads going at once, and it should have been confusing, but it wasn’t at all. I loved it and even cried at the end.

Three good books in a row! When I logged them into Goodreads today I noticed that two of the books are on a list for the best books of 2015, and the third is on the Nook Best Books List. Yep! They were just great and what I needed to return to reading. The number one book on the 2015 Tournament of Books list is one called Station Eleven. Hey, it is a science fiction! Hmmm… I may have to check that out.

Hello July: Culebra Shawlette and Bee Books

It’s July! The garden is blooming, it’s a wonderful time to hit the great outdoors, and the warm afternoons are prime knitting and reading windows of opportunity. I have been spending the this week working on a fun shawlette from Bijou Basin called Culebra.

Tibetan Dream Yarn.
I loved this yarn when I first found it at the Interweave Yarn Fest. It’s 85% Yak and 15% Nylon. 
Shawl
As soon as I wound the yarn my enthusiasm waned a little. It didn’t look very nice anymore. Once I started knitting it I was in love with the yarn again. I had to cast on three times to get the correct number of stitches (long tail cast-on issue; somehow I never learn…) and the yarn really bloomed and softened as I worked with it.
Lace Close-up
Here’s a close-up of the lace design on the shawl. Fun, huh. The yarn is Tibetan Dream yarn by Bijou Basin. Here’s my project notes on Ravelry.

I finally finished the lace portion of the shawl this afternoon and now the rest will be garter stitch short rows from the middle of the shawl out which will create a shallow crescent shape. The shawl is knitted from the lace edge up towards the top. Lots of stitches to cast on, but then the knitting was easy. Now that I am out of the lace I am definitely in the knitting home stretch on this one.

My garden is blooming and looking much better than it did a couple of weeks ago, but it is absolutely lacking in humming. I haven’t seen very many bees hanging around even though I have lots of flowers that they like. Look at what is happening in my strawberry patch:

Strawberry plants
See all those luscious baby strawberries? Right. Neither do I. These plants have bloomed like crazy, but no berries. Dang it!

I miss the bees this year. I used to show a NOVA video to my biology classes about bees that they really liked a lot called Tales from the Hive. Bees are just amazing; a few years ago I entered a drawing for a bee hive for my classroom and was just crushed when I didn’t win. (Sounds strange, but this is a thing. The hive would have been set up in my room’s greenhouse and the bees would have traveled outside through a Plexiglas tube.) Years ago I had a bumblebee nest in the garden and they were the cutest things… Ok, there was one little incident with the cat, but other then that it was all peaceful. 🙂

Bee Books! I am behind in my reading resolution for the year. It’s the first of July, and I am now on book #44. I should be done with book #50, so I need to pick up the pace a little. As it turns out I have a stash of books (almost as big as the yarn stash) that includes a number of titles that involve bees. Hey. That’s the ticket. I’ll read bee books. Here’s the list.

A Sting in the Tale
This is the book that I’m reading right now. It’s about bumblebees. the kind of bee that used to live in an underground nest in my garden.  I hadn’t really thought about them as being different from honey bees, but they are.

The other books in my little stack are:

This is actually an eclectic mix of genres in this little collection of bee books. Some are informative non-fiction books, one is a mystery, a couple look to be great little novels. Perfect reading for the high days of summer.