Science and the Scleroderma Girl: Get Ready for the Rants!

Yep. This has all been about me needing to vent about all the alternative medicine and false information out there that is directed at people who are seeking to manage chronic conditions, lower their cancer risk, improve their lives, boost their immune systems, or just be more healthy.

There is so much coming at me that I would be a total victim if I didn’t have a way to sort through things. It is all presented as “scientific”, backed by “studies”, and supported by numerous testimonials. Often I am pressured by other people to adopt their products, treatment plans, or dietary guidelines, sometimes to an unacceptable degree.  The message “it’s your fault that you’re sick because you won’t do what I say” is out there, and I am surely not the only person to have been targeted by this.

Knitting.
Mostly I just ignore them and knit on. What do you think about my newest Close to You shawl? This yarn is from Western Sky Knits, and the colorway is called Nova.

Here’s the advice that comes my way:

  • Stop taking your drugs. The doctors don’t know what they are doing, and the side effects are unacceptable. (Really… this happens a lot!)
  • You can get well if you:
    • Follow the AP Protocol by going to an alternative medicine doctor
    • Never eat any processed or artificial foods
    • Only use natural products and eat organic
    • Only eat alkaline foods
  • You cannot consume any:
    • Salt
    • Sugar
    • Alcohol
    • Gluten
    • Dairy
    • Processed foods
    • Transfats
    • Seeds
  • You have to supplement your diet every day with :
    • Probiotics
    • Prebiotics
    • Turmeric
    • Cinnamon
    • Fish Oil
    • Vitamin D
    • Alkaline water
    • Tart cherry
    • Natural cider vinegar
  • You can treat your symptoms with:
    • Essential oils
    • Reflexology
    • Exercise
    • High fiber foods
    • Heat
    • Cold
    • Amber beads
    • Magnetic bracelets
    • Herbal tea
    • Aloe vera
  • Your disease was caused by:
    • A chemical exposure
    • Vaccines
    • That viral illness that you had sometime in the past
    • Leaky gut

Truly, if I wasn’t feeling overwhelmed by the fatigue, brain fog and all the other things that I deal with, having this all come my way is way over the top. Ugh. It is a lot of information, some reliable, some not so reliable, and some just plain false, for me to sort through.

Get ready!! The mini-rants are just ahead as I unpack as much of this as I can for you in the days ahead.

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The Scleroderma Chronicles: Year 3.6 There is a 911 call…

Yep. It finally happened.

Upset cat
These scary firemen came to the house and took mom away.

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…

Arm with edema.
Check out my edema:  Can you see the details of the quilt that my arm was resting on?

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.

Arm Warmers
I took this picture of my incredibly cute new arm warmers. This is the Armelitas pattern by knitcats Design, and here are my Ravelry project notes.

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”.

You think?

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.

Grooming cats.
with my latte and the cats!

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!