Here is my crazy week with a lot of picture support.
I’m pretty sure I’ve flunked out of palliative care. Here’s the problem: I need someone to help me manage my overall medical care (since I have six different doctors at this point…) but they don’t really do that. They do help people with serious end of life decisions and provide medical options to ensure their comfort; I got some great advice and then they kind of turned me loose back into the health care stream. I’m kind of a catch and release palliative care patient: they will call every three months to check on me, but basically I’m doing pretty well. I have a serious illness, but I’m not yet seriously ill enough to really justify taking up their time. I’m already doing a lot of the things that they encourage patients to do (and so do all of you, too.) It’s really important to do something that helps with stress like meditation (or knitting, spinning, and weaving!) and they told me to start keeping a journal (Oh, you blog? Never mind! Just carry on with that, they said.) Really, it was encouraging. They told me to use the inhaler as much as I want and to go to more frequent appointments with my primary care doctor. Check. I can do that. 🙂
It is good to think about end of life decisions, though. Here’s how I reacted: I called my kids (and grandson) and told them that we need to all go to Walt Disney World for a fun vacation. We will ride the Monorail, buy Micky Mouse ear hats, go to the Star Wars attractions, and it will be wonderful. I’m also systematically cleaning out all of my junk from cupboards and the garage. Does anyone want my Great-Aunt Alice’s set of crystal platters? How about a classroom set of homemade DNA models? A well-used heavy duty 3-hole punch? Right. All those things are out of here!!
It has been really nice this week; warm and sunny with blooms and bees. However, this is Colorado; we have a winter storm warning posted for tomorrow because a humongous storm is roaring in to dump huge amounts of moisture for the next 5 days. Seriously. I’m wondering how many inches of snow is made by four inches of water. The storm is the big story on the news and each update reports it to be building in intensity from the last report. Yikes! Maybe I should pick up speed on the mitten knitting.
That’s OK. I have hummus, books and yarn. I am all good.
Have a great weekend everyone. If you should happen to see a snow shovel, think of me.
Wow, the week just sort of rushed by without me getting much of anything done. Mostly I have been going to doctor’s appointments and getting tests done; lots of energy being drained away without a single knitted object to show for it. What is up with that?!! This week I didn’t do any rocking; it was more like getting rocked by the week this time.
Still, there have been accomplishments. Check out the finally finished slippers that I made from the Dream in Color kit I bought a few weeks ago:
But mostly I spent the week in doctors offices or in bed reading my latest series of compulsive reads: the Cat in the Stacks series by Miranda James. They are fast cozy mystery reads that feature a murder-mystery solving librarian with a giant Maine Coon cat sidekick. I enjoy the books, but it kind of bothers me that the cat on the front cover, who is excessively handsome, is not really looking all that much like a Maine Coon to me. I kind of know about this because Yellow Boy is a Maine Coon mix.
Still, a small detail. Perhaps the artist had a particularly well groomed cat for the model. The mysteries are fun and I am chomping right through them. There is a housekeeper named Azalea in the books who takes care of the house cleaning, shopping and leaves yummy food in the fridge for people to eat when she isn’t cooking up killer breakfasts for them. She even does the laundry. I need Azalea. Seriously, maybe one of the doctors can write a prescription for Azalea for me. 🙂
I hoarded up energy so I could go to the Interweave Yarn Fest on Friday. What a trip! What a great day! But that, my friends, is another blog post.
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.
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.
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.
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.
It is March in Colorado, which means we are in the midst of endless weather adventure. This last week we experienced a march of weather fronts that came through the state with wind, wind, and more wind. It was sunny but still miserable for cats and people.
I was pretty miserable myself. Usually my joints are OK, but this week all of my tendons took to hurting. Gee, there are a lot of tendons in a human body! Not only did my hands and wrists hurt, but so did my knees, hips, feet… well, pretty much if it moves, it hurt. I finally had to resort to pain killers and spent a lot of time in bed this week.
That’s right, it is now spring. We are in for weeks of chaotic weather, but the plants will be coming back to life, the birds will be arriving soon, and I can’t help but be happy. Today my hands feel fine, I’m going to heat up some soup for dinner using my new bowl holders, and then I have a beautiful shawl to knit.
It turns out that this was a pretty good week after all.
I have been knitting on mitts like crazy, but for some reason I have shifted my interest to shawls. Seriously, I am dreaming about lacy shawls and the yarns in the stash. Must. Have. A. New. Shawl. It is a serious case of shawl longing for sure. It is less than a month from the Interweave Yarn Fest and I need to be flashing a new shawl when I go. It’s a matter of pride.
And besides, it is raining outside today. Gloomy. Cold. I can’t be expected to knit in these conditions. I need to go on a pattern hunt and then it is time for some serious stash shopping.
I think that the whole “I need to knit a shawl” thing started when I saw this yarn at the local yarn shop. Doesn’t it look like a great warm weather shawl? I want the body of the shawl to be in the light color and the bright yarn will be used for some type of color pop. Maybe knitted lace at the bottom of the shawl can be in the bright color. I have some shawls in my shopping cart at Ravelry (OK. There are 58 items in the shopping cart. Some of those must be shawls, right?), so I headed on over there to see what I could find buy.
We have a winner! This is Waiting for Rain by Sylvia Bo Bilvia. I’ll be adding lace to the bottom and maybe some other pops of the bright color yarn. I bought several other shawl patterns that were in my cart while I was there with a smoking PayPal account. Here they are:
Well, once I had all of those patterns printed out I headed up to the stash to dig around and match yarns with the patterns. My stash is in the walk-in closet in the spare bedroom, so I took my laptop and a latte up with me and dived in.
I am so fired up and energized to get knitting on the new shawl projects. Check out my Ravelry queue; it is now really shawl intensive. This afternoon the sun came out and I spent some time knitting on the current projects. I do believe that I will have some FOs to show off by the end of the week.