Yep. It finally happened.
It has been kind of a hard six months. I’ve been dealing with a serious flare of my Sjogren’s Syndrome: dry mouth, eye problems (retinal detachments in BOTH eyes), brain fog, and horrible fatigue. Seriously, off the chart fatigue. Bad Sjogren’s, bad!!
But I think that my systemic sclerosis (scleroderma) has been chugging along as well. My chest feels tight, and when I do anything at all I start to breath hard as I catch my breath. Okay, there might be some panting… Sometimes I get dizzy and I have to put my head down. Vacuuming is suddenly a horrific task, but just coming up the stairs or washing out a pan at the sink can also set me off. Sometimes my lips are blue…
One of the problems with being chronically ill is that you just keep taking things in stride. After all, it isn’t like this is the first time I’ve seen edema like this, or noticed that my lips were blue. I get out of breath all of the time, and I’ve been telling my doctors about all of this for the last 18 months. But somehow, things seem a little worse now. I have heart palpitations and there is a constant pressure in the middle of my chest. I have developed a headache that just refuses to go away, and my muscles and joints are behaving even worse than ever.
So, Friday while I was resting up in bed after the ordeal of making my morning coffee (yep. I go back to bed to recover from getting out of bed…) I decided that I would call the pulmonologist’s office to ask for an appointment. As usual, thinking that I would be on my feet for only a limited amount of time, I planned several little chores to do while I was going to be up.
Aren’t those the cutest armwarmers? I put them on, and then started the dishwasher, got a load of laundry going, and then pulled on some more warm clothes (ahem… my Cactus Flower socks and Marfa is a Black Elephant shawl over some fleece pants and a denim shirt) so I could sit at the computer downstairs to make the phone calls.
So, I was out of breath when I made the call. I got ahold of the nurse at my pulmonologist’s office to ask her if I should came in for testing right away or if it would be best to make an appointment. As I talked to her my breathing got worse… I just couldn’t catch my breath and I was now outright panting. I began to feel faint.
The nurse called 911.
I ended up sitting on the floor by the front door with the phone on speaker in front of me waiting for the paramedics to arrive. In just a few minutes they had bundled me up and were whisking me out the door leaving a visibly upset MacKenzie watching from the top of the stairs. It was snowing outside; I didn’t have a coat, but I had managed to hang onto all of my knitted items. The paramedics attached me to all of their sensors and then rebundled me in blankets and knitted items afterwards (okay, my hands turned blue. They hadn’t ever heard of Raynaud’s, but they becaume instant fans of wooly warmth when presented with fingers that matched my denim shirt…) My armwarmers were popped back on over the IV line and the oxygen sensor on my finger. They used the shawl as an additional blanket. I never got my breathing back under control, and was still panting up a storm when I got to the hospital, but I was better equipped than most to cope with the cold. I like to think that I was pretty darn fashionable, too.
Into the MRI machine I went, rocking my armwarmers, as once again the doctors went on a blood clot hunt. Every one of my health emergencies has involved blood clot hunts; it’s a scleroderma thing. No blood clot. No pneumonia. No heart attack. After 2 hours sitting on the gurney in the ER my breathing was under control again and my O2 was fine. My best friend Deb arrived with knitting in hand to sit with me. My son arrived in time to take me home again with instructions to not let me drive or stay home alone.
“This is something that needs to be treated by a specialist”, the ER doc tells me. “You need to call your pulmonologist’s office first thing in the morning to get in to see her. You need additional tests that can’t be done here in the ER”.
It’s hard to not be stuck by the irony of this. I’m back right to where I started. It is kind of known in the scleroderma community that going to the ER is mostly useless because they don’t have the knowledge and experience to treat your condition. I’ll be calling my pulmonologist first thing Monday morning, but this time I will be calling from bed in a well rested condition.
For those of you who don’t know all of the details of my autoimmune bad-boys, here’s what is going on:
- I have the limited form of systemic sclerosis, which is a subset condition of scleroderma. I have thick skin on my lower arms, legs, face and neck mostly, but the damage is also affecting several of my organ systems. I am considered a classic case with all of the CREST components.
- I also have Sjogren’s Syndrome, which is fairly common as about 15% of systemic sclerosis patients also acquire this sidekick condition along with the scleroderma. It’s serious in its own right, but not usually life threatening.
- Systemic sclerosis has a whole basketful of complications: Raynaud’s Disease, interstitial lung disease, pulmonary arterial hypertension, and kidney disease along with the almost universal digestive tract complications. I have all of these, but in my case the words that are used to describe how I’m doing are “mild, early, and moderate”, which are nice descriptors to have if they are being used in the context of lung, heart, and kidney disease. I’m kind of guessing that one of the heart/lung conditions has taken it up a notch.
Today I’m camped out with my son waiting for Monday to arrive. I’m knitting.
Do you know the great Elizabeth Zimmerman? Her famous quote, one that I bear close to my heart on days like this, is: “Knit on, with confidence and hope, through all crisis.”
Knit on, my friends, knit on!
20 thoughts on “The Scleroderma Chronicles: Year 3.6 There is a 911 call…”
You are so inspirational. What an amazing attitude you have. I am glad you are back home and hope that the doctor will be able to come up with something to help with your breathing. So glad you had your knitwear and that your son is able to stay with you. I hope you two have some great bonding moments this weekend anyway.🙂
I don’t know that I’m all that inspirational, but how kind of you to say so. I am trying to maintain grace in the face of adversity. I once watched a training video while I was teaching that mentioned that we can choose our attitude. That’s true. There is nothing that I can do to change what is going to happen to me today, but I can choose to be cheerful and polite to the health care professionals and the other people in me life who are helping me. Plus, I can knit! I think that is true that it reduces blood pressure and helps with stress.
I’m actually camped out in my son’s apartment, which is near a major hospital. I’ve had another couple of episodes, but nothing like yesterday. Hopefully I will maintain okay until Monday, then I’ll be calling in first thing. Well, after I get the latte made…
I’m glad you’re with your son and knitting. My fingers and toes are crossed that this is a passing flare that will settle down.
This is been coming on for quite some time, but it will be good to have a diagnosis and hopefully some treatment. My son is really keeping tabs on me, and so far I’m hanging in there. 🙂
Oh dear! I’m glad you’re not alone right now. Hope they get everything sorted out and that you feel better soon!
Thanks! I am so lucky that there are friends and family who can keep their eyes on me while I’m on the shaky side. Hopefully things will turn around soon.
Yes! Wishing you the best ❤
you sound like you’ve had it rough recently! I hope you can get some treatment from the right people soon! ps: I love those armwarmers. the yarn is super pretty too! hope you’re ok!
It has been kind of a tough year, but I still consider myself lucky that I am able to do almost anything that I want to and that I have good friends and neighbors who help me.
The arm warmers are really comfy and work great. I pulled out some more yarn to start another pair. I’m wondering what they would look like with helix knitted stripes…
Oh no! Take care and knit on my friend!
I had a really laid-back weekend with my son and tomorrow I will be making those phone calls. Lots of knitting going on…
Marilyn, your account of all of this is so “take it all in stride,” and while I totally get that “what else are you gonna do?” HOLY MOLY!!!!! I so need to HUG you!!!!! Seriously! Huge, long HUG!! I hope you can feel my care and concern and good energy coming your way. Please email if I can ever help in any way: firstname.lastname@example.org. ❤️
Melinda, thank you so much. It all went down so fast I didn’t really have time to think of things. I talked to the nurse this morning and made my appointment, and hopefully they will get to the bottom of this. I’ll keep your email in my planner. I really appreciate the hug!!
I hope the specialist can soon help you… I have an orphan neurologic disease and I know the ER irony too well… But knitting and crocheting has helped me so much through this; wether I’m the one hospitalized, or waiting for news from a relative, it really helps to have something useful (and mostly warm) to do. And hand-made items are so warm and comforting !
I agree with you – the knitting helps so much. I can take it everywhere and I get something beautiful and useful for my time. When my Sjogren’s is really acting up I have trouble reading, but I can always knit!
I’m sorry you also have an orphan disease,. So annoying to be dealing with something that other people can’t see and have no frame of reference for. Every time someone tells me to “get better soon!” I just want to sock them. Better to knit. 🙂
I hope things go well at the specialist!
Me too. My primary just ordered testing, and I see my pulmonologist soon.
I am so sorry for your struggles, it sounds just horrible. Thank you for sharing your story with others, you are an inspiration for those of us who are lucky enough to read it.
Oh, I feel like I’m taking advantage of everyone by blogging about this, as it really helps me process what is happening. I was told to keep a journal, but when I told my doctor that I blogged, she just grinned and said, “carry on!” I am glad that sometimes I can be inspiring, but I am so paid back by the support that comes back at me through the blog posts.
Well, I so appreciate you sharing your journey. You are an amazing woman.