Sjogren’s Syndrome – Yarn, Books & Roses

Science and the Scleroderma Girl: Supplements and Me

Let’s be honest: everyone with scleroderma wants to feel better. We trade info constantly, and almost everyone has a supplement that they have found is really helpful. It’s tempting to load up on everything at Vitamin Cottage that might be helpful, but you should know me (geeky science girl here!) by now… if it doesn’t have promising research studies to back up the claims, I’m going to pass it up.

Tumeric (and Curcumin)

So many people have advised me to try turmeric. Cruising the internet I found lots of information from sites that are devoted to nutrition, health, or supplements, but I wanted to see hard data. Yep. Pretty darn easy to find. This controlled experiment found curcumin worked better than a traditional pain med following a dental procedure. Another study looked at migraine pain and the levels of two inflammatory markers (IL-6 and C-reactive protein); the result was that curcumin and omega-3 fatty acids did reduce inflammation. Wow. That sounds pretty promising. Finally, since one article I read suggested that curcumin could help with renal disease I hunted for that…this research showed that curcumin is beneficial for kidney disease. I scored myself some curcumin and I think that it is helping, but I have to be careful with my gastritis-prone stomach lining.

Vitamin D

“Under no circumstances are you to let the sun hit your skin!” directed my dermatologist. “Are you getting enough sun?” asked my rheumatologist. “You need the vitamin D and the natural kind you make in your skin is best…” Ugh. How am I supposed to figure out stuff like this? Because I keep a symptom journal I have discovered that sunshine makes me sick: rash, fatigue, pain. Sorry rheumatologist, the dermatologist wins this round. I started taking the vitamin D supplement not long after I was diagnosed and noticed that it helped me with depression. Who knew? My internist monitors my vitamin D levels to make sure that my current supplement is enough.

Omega-3 Fatty Acids (Fish or Krill Oil)

I was really late to come to this party. Struggling with an out-of-control Sjogren’s flare last winter my ophthalmologist suggested that I take fish oil to improve my tear production. Okay, my tears are just horrible. Not only do I barely produce any tears, but what I have flash evaporates right off my eyeballs lickity-split. I didn’t even bother to check the internet before I gulped down some fish oil tablets from the grocery store. Wow!! The next morning I woke up to eyes that didn’t hurt. Then I noticed that my neuropathy was better. Oh, yeah. There was that one study that said that omega-3 oils helped with migraines, and my ophthalmologist mentioned that he took it for tinnitus… It gets even better: it helps reduce blood clots too! Every time I end up in the ER they go on a blood clot hunt… this is probably a good supplement to add to my diet, huh. It also helps with Raynaud’s, but the effect was seen with people with primary Raynaud’s. Hey, it was a small study. I’m taking the krill oil anyway!

Tart Cherry

Things were really bad for me last spring. I had brain fog and dizziness that left me afraid to drive. The fatigue was unreal and everything hurt. My BKB Deb advised me to try tart cherry. Off to the internet I went. Oh. It is a real thing. I found this article, and this one, and one showing memory improvement in rats. Since I was miserable and couldn’t remember what a memory was, I took tart cherry out for a spin. Woohoo! I woke up the next morning feeling *normal*. I had energy, and the brain fog was gone. In the days and weeks to come I continued to feel pretty darn good until… the kidney function tests came in. My kidney function dropped 15% in just 6 short weeks and the tart cherry fun came to a screeching halt. The notation “chronic kidney disease” was added to my chart and that was the end of that. I stopped the tart cherry, accepted feeling like road kill every morning, and my kidney function crawled back up to a higher score. Whew! Talk about dodging a bullet!

There is a lesson here. Take the supplements that your doctors suggest. Check out other supplements before you start taking them, and let your doctors know before you start. I talked over the tart cherry with my internist and rheumatologist before I started, and they caught the kidney function drop pretty quickly because I was going for bloodwork every month. Just because I ran into trouble doesn’t mean that you will. Keep a symptom/food log and monitor like crazy. If your doctors know what you’re up to they can order testing just like mine did. Saved by the blood test!

Knitting — Oh yeah. I also do a daily supplement of knitting. 🙂

If anyone has another great supplement I should check out, let me know!

Science and the Scleroderma Girl: The Only Point in Common

Two years ago I was getting bounced around between several doctors as they tried to figure out why I was struggling to breath. The rheumatologist felt I should see a cardiologist. The pulmonologist felt that I needed to be treated by the rheumatologist. The internist insisted that the pulmonologist needed to intervene. The rheumatologist was very reluctant to give me an inhaler even though he had ordered the PFT that indicated that I needed one.

I was getting close to pulling out my hair! Literally, there were too many cooks in the kitchen and no one could manage to get the meal assembled. I was the cake in the oven, and I had just collapsed into an ugly, doughy mess…

“Look”, said the rheumatologist in the middle of this, “you are the only point in common between all of your doctors. Each one of us sees just one slice of your health, but you are the one getting all the info…” In effect, she was telling me to take charge of my health. Uh…

Spock: He is intelligent, but not experienced. His pattern indicates two-dimensional thinking… (Star Trek II: The Wrath of Kahn)

Seriously? I’m expected to organize this circus? I have skills, but to suggest that I should run this show is ludicrous…

Except, from a certain viewpoint, I am running the show; I AM the show. I have a serious illness, and I have a team of doctors to address my symptoms and halt my disease’s progression. I need to be proactive and ensure that I get the treatment that I need. Clearly, I needed help to sort through the conflicting advice and to assign priorities to the elements of my treatment plan.

There needed to be one doctor who knew me well, understood the big picture, who could also cut through the red tape and facilitate immediate medical response from the most appropriate provider if needed.

I made an appointment with my internist, who was also my primary care physician, and laid out the problem. I told her that I needed someone to review all the notes and test results from the other doctors on a regular basis to understand the big picture. I shared with her my concerns about differing information from the other physicians: I needed an expert to work with me to coordinate my treatment plan. There needed to be a doctor who saw me on a regular basis, who knew me and my situation, who could take a “snapshot” of my health situation, and who could see me almost immediately if I got into trouble. One of the problems that I struggle with is knowing which doctor to call when I develop problems; with this arrangement I have a designated first contact who will decide which specialist needs to be contacted next.

We agreed that I should come in every three months for the medical review and snapshot of my current status.

Everything changed for me. My internist reads everything from the other doctors at these appointments, and she answers questions that I have in a cross-disciplinary way that the other specialists can’t. It’s more like a consultation than the usual medical appointment. She looks to see what has been missed by the other doctors, and facilitates communication between the doctors. She has sent me for immediate testing, cut through the red tape so I could get oxygen when I needed it, and makes sure I get the complete text of all testing reports.

I make an appointment with her before I see the specialists to plan for those appointments, and then I see her afterwards to debrief on what happened and to see if anything was missed. When I go to my appointments with the specialists I can talk about test results, my prescriptions, and the symptoms that are concerning me; I have become an informed patient. Because of this I am a better conduit of information between the doctors, and the coordination of care and smooth communication has greatly increased. My doctors and I are now collaborative partners working to manage my disease.

From a collection of 6 doctors I now have a smoothly coordinated team to jointly treat my illness. For me, this is a huge difference! I’m now in much better shape, and I feel more in control of what is happening. I AM the only point in common, so I had to activate my hidden superpower of facilitation and coordination to make it work.

And knit. I had to knit a lot.

Have a good weekend everyone.

The Scleroderma Chronicles: I’ll take a side of fibromyalgia with that…

My poor physician team. I come to see them with a whole host of complaints at every appointment. I can see then mentally sorting the symptoms into piles as I talk :

important, needs to be investigated immediately.
sad, but part of the life of a patient with this chronic condition.
these are issues that should be passed on to another member of the treatment team.
irrelevant to the current diagnosis.

For three years I’ve been mentioning my muscle problems. My muscles are sore to the touch, and they just burn sometimes. The burning can go on for days, and I do get a little cranky; okay, maybe some wailing has occurred. Poor cats! It is really painful at connection points around joints. Stamina is poor, and I’m exhausted all the time.

Yellow cat. — I dragged a cat pillar into the bedroom for the cats to sleep on as it too hard to have them in bed with me. There are days when a cat paw on my leg is more than I can handle.

Some of these symptoms can be explained as being part of the whole scleroderma thing. Muscle issues are rampant with scleroderma as some of the necessary enzymes for muscle movement are too low for reasons that aren’t clear to me. My rheumatologist has checked for polymyositis and other serious muscle problems, but my muscle strength is good and my test results have been normal. I’m in pain, but my muscles aren’t being damaged. I have been just managing with heat pads and knitting as there seemed to be nothing that could be done. To make things worse I can’t have anti-inflammatory drugs or painkillers because my kidney function is low. Bad muscles, bad!

Best advice ever for the scleroderma girl. Really, what else can I do?

At my last visit with my rheumatologist I was really sore to the touch, and she suddenly asked if I was experiencing brain fog…

Oh my lord, yes! It is so bad I’m afraid to drive sometimes. I struggle with anxiety and some depression when things are bad. The fatigue is off the charts when this is going on, and I can’t get good sleep. Lately I have developed headaches too…

“Oh. This is fibromyalgia“, she said. Just like that the light had gone off for her; my symptoms were suddenly sorted into another pile that screamed “fibromyalgia”. She did a quick assessment, and the diagnosis was added to my chart lickity split…

I also have Sjogren’s Syndrome, and the symptoms of fibromyalgia and Sjogren’s do overlap, but it would appear that I have both. No wonder my fatigue has been so extreme.

So, nothing has changed, but at the same time everything has changed. I have concrete reasons for feeling so bad. My blood pressure issues have improved, and I am able to walk and exercise more. I’m using my inhaler every day and my blood oxygen levels are coming up. The more I move, the better I feel. Little by little, I am getting a handle on things again. I am sleeping like a rock and I wake up feeling pretty good.

My terrible twosome of autoimmune diseases just became a triad, and I am actually feeling more hopeful about my ability to manage things. Take that, you three! I am coming after you all with a pitchfork!

Err… make that knitting needles. I’m coming for you all the same. Be warned, I am taking you down!

Knowledge is power.

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.

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!

The Scleroderma Chronicles: Rocking the Spoonie Clock

I, along with a lot of other people with chronic illnesses, consider myself to be a “spoonie”. If you’ve never heard of spoon theory, it is a metaphor that describes the intricate bargaining game that those of us with limited energy resources play everyday to balance our activities with the little gas in our tanks. Christine Miserandino developed the spoon theory and described it in an essay on her blog in 2005; trying to explain to a friend how she managed fatigue with her lupus, she grabbed spoons and used them as props to represent discrete energy packets. If you only have a limited number of energy units (spoons) to use in a day, you are painfully aware of how many spoons everything that you do costs. A shower? That is a spoon. Walk to the mailbox to pick up the mail? Another spoon. If you want to grocery shop, plan ahead. When the spoons for the day are gone, you are done. If you planned badly, you are basically toast. Get ready for some bad days ahead.

Owner and her cat. — Wrapped in layers of knitted goods, struggling to stay warm, MacKenzie and I enjoy a late night purr break at the height of my flare in December.

Early last December I ran through my spoons and just kept going for another couple of days. I knew I was headed for trouble, but I was in a situation where there were no other options for me. Take care of today and deal with tomorrow when it comes, I told myself.

Oh dear. The flare arrived and fatigue descended with a vengeance. I slept 10-12 hours a night and collapsed in exhaustion for a nap at least twice a day. If energy is counted in spoons, I was down to only about 10 for the day. Not only were the spoons my problem; it appeared that as soon as I got onto my feet and went into motion an internal clock started running. No matter what I did, I could not go more than 2.5 hours without a nap.

Christmas shopping!! AARRGGG!!!

Thank goodness for the internet. I made plans and checked the availability of items I wanted to buy using my phone while in bed. I made sure stores close to me carried the items that I wanted. I made shopping lists in a little spiral notebook that I carry with me (hello… brain fog!!) to help me remember what I’m looking for while in the stores. I planned shopping routes that were short loops that would take me to three stores/stops max and then get me home before my time and energy ran out. I planned the trips for times when the parking lots would be almost empty so I wouldn’t have to walk far.

So, one day I planned and cooked food for the week. Who knew making spaghetti was so exhausting? Before I could get the dishwasher loaded the timer on my spoonie clock went off and I was done.

The next day I made one of the loops. Whew. I got right up from the nap, started up the car and headed off to Kaiser for my monthly blood testing. Then on to Target… hurry, hurry, it has already been an hour. I finished that loop at the book store where I shared a laugh with a mom who was making the same stops as me on her own shopping route. She had also gone to the public library, though. She looked at me kind of weird when I said I had decided to not go to the library as it was too far to walk in from the parking lot there. Ugh. No way was I going to explain about the spoons to her. No time. My clock was ticking; I was at the 2 hour mark and had to check out and drive home. Hurry, hurry. I’m now having trouble walking because my legs don’t really want to go… Brain fog is starting to close in and my head feels buzzy…

Home. Nap. I didn’t even take the packages out of the car until after the nap.

Two more days, two more loops, and I had gotten everything and even got stuff mailed out on one of the loops. Careful planning, lots of patience, and an acknowledgement of my limitations went a long way in getting me through everything. Did you know that if you go grocery shopping late at night there is no line. True fact!

For more than a month I was careful with the spoons and never ran down my spoonie clock. I knitted in bed. I ate my little pre-planned meals and ordered things off the internet when I could. I took lots of naps, kept up on my meds, and did everything I could to manage my symptoms. The Turkish Hell socks lengthened as the list in my notebook got items crossed off.

Today I am through the flare and I must have at least 20 spoons a day. Maybe even 25. I’m rich!! The spoonie clock is up to 6 hours. That’s pretty darn good.

You know, people are always telling me how great I look.

If only they could see my spoonie clock ticking away.

MacKenzie Speaks: The Tale of the Turkish Hell Socks

Hi. I’m MacKenzie.

Cat face — I know that it has been a long time. I hope that you haven’t been missing me.

The Mother of Cats has been a severe disappointment for just weeks and weeks. She caught some kind of cold early in December, carried on like a baby for over a week (nasal spray, salt water gargling, boxes of tissues… Yellow Boy and I became quite concerned about her mental health…) and COMPLETELY ignored our needs. As if that wasn’t enough, when she finally got over the virus, she then became even worse. She slept for hours and hours, stayed in her bed even when she was awake, and totally failed to deliver our cookies on time. SHE DIDN’T EVEN DO CHRISTMAS!!! which is totally our favorite time of the year. Hello… Christmas trees = world’s best cat toys. How could she have failed us this way?

She said she was in a flare. Whatever.

When she was awake she worked endlessly on these socks for her cousin’s Christmas present.

Yarn Blank — The yarn for the socks was from this sock blank that she bought at a yarn festival. She made it into a ball and wouldn’t let me help even a little bit.

Cat — But she was too tired to knit very long on them at a time, and can I be frank, she was pretty stupid with brain fog. Lots of mistakes. Lots of stress. She kept chasing me away while I was helping. She tried to knit in bed, which is MY place. So I ate the yarn a couple of time. If she gave me cookies in a timely manner these things wouldn’t happen.

Heel of the sock. — Her lack of energy and general stupidness was really obvious when she knitted the heels. It took her THREE HOURS to pick up those stitches to knit the afterthought heel. She started sighing and pushing me off the bed. She began to refer to the knitting project as the Turkish socks from hell. The Mother of Cats was really in trouble.

Cat and knitting. — I just kept on encouraging her. I purred a lot. I settled for fewer cookies. I even stopped eating the yarn. She was really in pitiful shape.

Unfinished socks. — By Christmas Day she had finished this much. Her cousin reminded her that Christmas continues until January 6th.

Finished socks. — Finally, finally they were done!

The Turkish Hell socks were packed up last week and mailed out. On Saturday, the last day of Christmas they arrived safely in their new home. They had better behave themselves and last for years and years; I would hate to travel all the way across the state to whack them into shape!

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

These socks, called Classic Kilim, are from the book Around the World in Knitted Socks by Stephanie van der Linden. The socks were supposed to have tassels and embroidery; that so did not happen!!Here is the info on Ravelry with more info about the book. My notes on Ravelry are here.

On December 1st I got my pneumonia vaccine even though I had been struggling a little that week. That night my youngest son became ill with complications of diabetes and was rushed to the ER . I spent the next 2 days/nights at the ICU with him. Yep. About the time my son returned to work and I moved back home I was sick; my autoimmune diseases flared while I was fighting through the viral illness. My Sjogren’s symptoms have been off the chart and crushing fatigue and brain fog appeared along with them. This week I am better and have been knitting up a storm and planning blog posts. Hopefully I’ll be online again in a couple of more days.

Happy New Year everyone!

The Scleroderma Chronicles: Year 2.5

Wow. How quickly time flies. It has now been two and a half years since I was diagnosed with the autoimmune disease limited systemic sclerosis (AKA scleroderma), and I joined the rare disease club. When last I reported on my progress I was at the end of a tough year; lung disease, oxygen, a referral to palliative care, gastroparesis, and constant pain. I was having trouble walking and my stomach was really acting up; I was losing weight at the rate of a pound a week. Ugh. I was somewhat upbeat by the end of the second year since I was off oxygen, but still, things weren’t really all that great.

Mitts and bracelet — Look at the cute mitts I made in teal, the color of scleroderma. I got that bracelet last fall at a scleroderma patient education conference that loaded me up with lots of great information.

What a difference six months can make. A change in medication made my Raynaud’s much easier to handle. I started doing yoga (carefully) a few months ago and added tart cherry extract as an anti-inflammatory that I can tolerate better than traditional NSAIDs. I bought shoes that felt better on my feet (Haflinger clogs) and got serious with stretching exercises for the plantar fasciitis I developed due to tightening on the bottoms of my feet. I switched to a gastroparesis diet that is mostly easy-to-digest, low fiber foods (got to love pasta and yogurt to do this one…) and began to add some blended fruits and veggies. My weight loss stopped and I started to gain back some weight. My skin has started to loosen up on my right arm (scleroderma literally means “hard skin” as the most obvious symptom is thick, hard skin that develops as the result of systemic scarring), which is pretty darn exciting! Over the last six months my energy has been slowly coming up and I have been managing with less pain; I can even walk normally! I’m breathing better and I rarely need to use the rescue inhaler. There was a Sjogren’s flare, but still, things are better.

I just finished making the latest round of testing and doctor visits, and I have to say, it is pretty exciting to visit with happy smiling doctors. My pulmonologist was almost giddy! My lungs and heart have maintained (scleroderma damage tends to be forever…) with almost no new damage; I am right at the edge of trouble, but I’m not there yet. I have good blood work, and even had the first NORMAL kidney function test in over 5 years. My red blood cell count is back down in normal range, and my muscle strength has improved so much I can now easily push shopping carts. It seems that the increased dosage of immunosuppressants has turned the tide and I am stable. STABLE!! What a wonderful word that is.

I will continue with all of my current drugs for now and there will be more testing in a year, but it is clear that I have definitely pulled up from the nose dive that they through I was in a year ago.

Life is good.

Back to knitting!!