April Updates: Sjogren’s Syndrome and ANOTHER Fade

Hi. If you’ve been following my blog for very long you already know that I am an out-of-control knitter owned by a self-absorbed and bossy cat named MacKenzie. You have probably detected that I am a science-oriented geek, an obsessive reader, and a casual gardener who loves her roses. You may have also realized that I have some serious and chronic health problems that I am trying to keep from taking over my life. I’ve been pretty up-front about the more serious of my autoimmune duo, systemic sclerosis (scleroderma), but I hardly ever mention the lesser of the two, Sjogren’s Syndrome. After all, since the diagnosis came in, all of my doctors (I have a six-pack of docs…) tend to focus on the scleroderma, so I almost forget that I also have Sjogren’s.

Except for this: of the two autoimmune conditions, it is the Sjogren’s that has pretty much taken over my life in spite of my efforts to keep control. Since April is Sjogren’s Awareness Month, I decided that I would share with all of you some information about this disease and how it has impacted me.

But first, the Fade!! I’m cranking out another Find Your Fade shawl that I hope to get done before the end of the month. Look at these colors! Look at how great this shawl is going to be! Color me happy! My Ravelry project notes are here.

Shawl
I’ve just started the 4th color and I can’t stop knitting because of the happy turquoise color. Must keep knitting. The 5th color will be even more wild!
Yarns for a shawl
See what I’m talking about? The color sequence for the shawl moves from right to left in the picture, and the next color will be that Hedgehog Fibres yarn. Then there will be that electric violet. Woohoo!

The weather has been nice this week so the cats have moved outside to bug hunt and I have moved into major knitting and house cleaning mode. OK, there has been more knitting. It’s important to have priorities…

Back to the Sjogren’s Syndrome. I know that you are just dying to know more about this little know and hard to spell disease. Sjogren’s isn’t as rare a disease as my bad-boy scleroderma (about 4 million Americans have it), and it isn’t usually life-threatening, but it is still serious and exceptionally life altering. Check out this symptom chart. This is one crazy-ass autoimmune disease; basically my immune system is attacking all of my moisture producing cells. That doesn’t sound all that bad, does it? As it turns out, the impact of this damage affects an awful lot of my body’s ability to function properly, and for this reason Sjogren’s is considered to be a systemic condition. Its most obvious feature is extreme dryness. Let’s take a little walk around my house as I explain this to you.

Lotions
Even I was shocked to realize how many types of lotion I have on my bedside table. There are 11 types of lotion here, and another couple of lotion bars in the drawer. I also have lubricant eye drops that I put in at least twice a day. I absolutely have to stay up on the eye drops every day or I develop cloudy vision. See, dryness. Dry skin, dry eyes. 
Bathroom
Dry mouth too. I never knew this before, but your saliva is necessary to fight bacteria in the mouth; without it things get out of control quickly.  I was producing no saliva when first diagnosed and I did have lots of dental issues. Things are better now, but I have to be very careful to keep my teeth as clean as possible, and I use the rinse nightly to help protect my teeth.
Sunglasses
The struggle to protect my eyes and skin continues every time I leave the house. I need lip balm and sunscreen before I go out, and sunglasses are a must since my eyes are really sensitive to sunlight. Because my mouth is so dry I don’t move anywhere without some type of fluid to drink. It’s such an issue for me I usually keep a case of ice tea in the car so I won’t ever run out. See the cute fingerless mitts? Sjogren’s causes Raynaud’s  (which I have) so I need to keep my hands and fingers warm at all times. If you think I’m crazy about managing fluids you should see how many pairs of fingerless mitts and gloves are riding around with me in the car with that case of ice tea…
Steamer with hot pack
Combating dryness makes sense, but there are lots of other annoying symptoms that I’m dealing with too. My joints and muscles hurt all of the time. I start every morning with chemical hot packs on my knees and leg muscles. I recharge them in this steamer each evening so that I’ll be ready to use them as soon as I wake up. This is my routine: make a morning latte, and then go back to bed with the hot packs and coffee.  Usually there is a cat added. Cats love hot packs!
Inhaler
My Sjogren’s antibodies also cause small airway disease (asthma). I notice blue lips quite often these days, and I have to monitor my blood oxygen levels and use the inhaler if my levels get too low; I’m trying hard to stay off oxygen. Darn. Just another couple of items I need to fit into my knitting bag.
Blender
and then there are my gastrointestinal issues. I developed gastroparesis this fall and now I am rocking a low fiber diet of easily digested foods. Check out my lunch. 

Now for the things that I couldn’t take picture of: fatigue, neuropathy, and concentration/memory problems. The fatigue that comes with Sjogren’s is not the usual “feeling tired” stuff. This is true crushing fatigue that makes me feel buzzy, numb and like I’m walking through concrete. The neuropathy means that I have feet/hands that are always falling asleep; more trouble walking. Then there is the memory stuff. When I’m in a flare all kind of crazy things can happen. I got lost on the freeway once; now I always use the GPS to give me driving directions. I have gone out to run an errand and then couldn’t remember where I was going. I have big problems with vocabulary recall, and I forget things like my phone number at the most embarrassing moments. I lose my ability to read because I can’t concentrate…

Good grief, I pretty much have my life arranged around my Sjogren’s needs. I thought that MacKenzie was running the show around here, but it looks like he needs to take a back seat to Sjogren’s.

Cat
MacKenzie: Not happening. I am the man!!

Which brings me to the good things for which I am grateful. Most people with scleroderma/Sjogren’s struggle with anxiety and/or depression. I do not. I think that I am so very lucky in my wonderful, supportive friends and my son. I am lucky to have good neighbors, health insurance, and a pension that meets all my needs. I am lucky to have cats that pile on and purr through all the sad times. I am lucky to have the immensely meditative and calming art of knitting to carry me through each and every flare of my disease.

Knit on, my friends. Knit on.

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Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled cats.

26 thoughts on “April Updates: Sjogren’s Syndrome and ANOTHER Fade”

    1. You know, it isn’t that bad between the flares, but it sure is pervasive! It is a gift to be able to create beautiful and useful things even though I need to take it easy a few days a week. This Fade is just the happiest thing I’ve knit in a long while. I think that I’d better show off all three fades together in a future post. Each one has its merits. 🙂

  1. Sjogren’s sounds like an awful (and confusing) thing to live with and even understand. Somehow, though, you’ve managed to explain the symptoms and talk about its effects on your daily life and still make this post feel upbeat. I’m sure there are plenty of things on your to-do list besides being an inspiration, but let me tell you–YOU ARE!!! Thank you so much for posting so honestly and forthrightly about your experiences. I’ll be sending lots of good energy your way (and anxiously awaiting FO pics of your next gorgeous Fade!!!). ❤

    1. How lucky I am to have that molecular biology degree and the years in an immunology lab. 🙂 When I first heard that April was Sjogren’s Awareness month my first reaction was… whatever. Sjogren’s isn’t that big a deal. Then I though about it and paid attention to all the things that I do (and buy) to manage my symptoms, and thought about the symptoms that I had before my drugs kicked in, and realized that it was a lot. The good (and bad) part of Sjogren’s is that things came on slowly; I just kept coping and didn’t realize that I was getting really different from other people. (Other people do not carry liquids with them at all times, for instance… People do forget things, but what was happening to me was not normal!) The day I was diagnosed the doctor asked me if my eyes were dry (I don’t think so, I said…), but then when he tested it was apparent that I produce no tears at all. Oops.

      So, I am glad that I presented the disease in easy, upbeat terms. If even one person recognizes that they have symptoms too, then it is a good post!

      The Fade is moving right along. I’ half-way through the 4th color now. Maybe by the end of next week it will be flashing the FO pictures.

      Thank you for the energy! I can always use a little boost. 🙂

  2. And we are lucky to have you here sharing your knitting and kitties with us:) Your positive outlook amazes me. I can see it in every Fade you’ve knit. This one is spectacular. I love the teal with the pink. It is a perfect combination!

    1. Thank you so much! I feel lucky to be able to share the knitting and the kitties. These colors are the best yet! I can’t wait to show it off to my knitting group tomorrow. They haven’t even seen the 2nd fade yet…

  3. First of all, the knit shawl is lovely. I love the colors! Secondly, thank you for sharing a bit about Sjogren’s Syndrome. My human’s mom has this but doesn’t share much of the details and what she deals with on a daily basis, so now we can both understand how it affects her a little more. Thanks.

    1. Thanks for the kind words about the fade. I kept buying these colors and then figured out a way to put them together into a shawl.

      I’m sorry to hear that your MIL also has Sjogren’s. I’m glad to hear that sharing my story can help you gain some insight into what’s going on with her, and I certainly hope that she has mild symptoms. 🙂 I put some links to Sjogren’s info in the post, and you might find more useful info there.

  4. Thanks for sharing all of the information. Auto-immune diseases can seem invisible to those on the outside, and I always appreciate learning more and being informed. Some of my good friends and family have auto-immune diseases and the struggles are very real. You seem to have many excellent systems in place for your life! Thank you for sharing!

    1. You’re welcome. I always debate about how much I should share, but since this blog is one of my coping mechanisms I decided to come clean and to share.

      You are so right about being invisible. Not only is it hard to see what is happening to people that have chronic conditions, I’ve also noticed that people just don’t get the concept of chronic. Somehow there is an expectation that I should be “better” the next time they see me. There is a moment of surprise when they find that it is “still going on”. Yep. Chronic. How nice that you recognize the struggle and support your friends/family who are coping with illnesses that are life altering and difficult to predict. Hang in there with them as they start to get worn down, it will mean everything to them.

  5. You are an amazing woman and a fantabulous knitter! I am so glad that I know you, that you have the courage to share with us all what you are experiencing. It is so helpful to have the opportunity to understand something “from the inside out”… which is what your words have given me the chance to do. Your fade is gorgeous…. I won’t be there today but I do so want to see it in person when you are done! Maybe one of these days as you drive by my house you can stop by…..

    1. I am so glad to know you too! What a cheerful, positive, and outgoing person you are, not to mention the inspiration you give me to explore all things Shetland and to get going on some Fair Isle projects. Every time I see one on Ravelry I think of you. 🙂

      Shine on, my friend!!

  6. Thanks for a really good and informative post about Sjogren’s. I was diagnosed with the disease nearly 40 years ago. I, too, have multiple auto-immune diseases, but find Sjogren’s to be especially disruptive. I have suffered from all of the symptoms you have described at some point or other, but find that my knitting and a sense of humor (along with sunglasses and every emollient product ever made) go a long way.

    1. Sorry you have this too, but you are right – humor and grace go a long way! My rule of thumb: never pass up an opportunity to sample a new emollient product (as long as it’s unscented!!).

      I don’t know what your other autoimmune conditions are, but I wonder if your experience mirrors my own. My systemic sclerosis can have complications that are life threatening, so my docs tend to dismiss the Sjogren’s. It took me quite a while to figure out that it was the Sjogren’s that was making my life miserable on a day-to-day basis. Once I focused attention and internet searches on Sjogren’s and began to work that problem things got much better for me. Yeah internet!!

      Hug and happy knitting!

  7. So glad that you can still see all the positives in your life. I know they do not outnumber the down side, but at least the positives are giving the negatives a good run. Lots of xxXXXxxxs.

  8. Thanks for writing about this and for sharing so many details about your day to day living. I have a sister with MS, and like you, she has to manage a number of things just to get through her day. You both inspire me. I’m glad to hear that you have positives in life, too, not the least of which include family, friends, community and cats…and knitting of course. Alys

    1. I’m sorry to hear about your sister. My DIL has MS, and it is heart rending to see how it is eroding her quality of life. There is nothing for it but to keep working the problem and trying to stay positive. Knit on, knit on!

      1. I’m sorry to hear that your DIL suffers from MS as well. It is so debilitating. My sister gets relief from the fatigue by swimming at the Y for just 15 minutes in the morning. It helps with her stiffness too. It’s become harder and harder to get to the pool side, but she uses a motorized scooter to get to the pool’s edge, then lowers herself in. Yes, knit on, knit on.

  9. I do not knit because I do not know how and people have tried to teach me and it just ain’t happenin’……………..I really like this blog post. My eye doctor says I have Sjogren’s, but my rheumatologist says no, even though there’s been no official testing for Sjogren’s, so I don’t know how she can say whether I do or do not have it…………..I do have most of the symptoms. Dry eyes, constant dry mouth. I can drink and drink and drink and my mouth is still dry. My skin and hair is dry. My eyes are so sensitive even on cloudy days I must have my sunglasses on if outside. The fatigue, memory problems, and on and on………………………………..Do you have any suggestions as to what I should do to, at least, get tested? What kind of testing is needed to diagnose or rule out this awful disease? I also have Gastroparesis with a GJ feeding tube and a very long list of other diagnoses……….Thank you for a great post. Take care. Peace out! 🙂

    1. Wow, you sure have a lot of symptoms like my own. Since you have a rheumatologist I’m assuming that you have RA, or lupus, or another one of the autoimmune fun club conditions. Sjogren’s does occur with other conditions. I was diagnosed by a blood test: the marker antibodies are SS-A(Ro) and SS-B(La); I have SS-A. Do you have a positive ANA? These antibodies are ones that cause a positive ANA, but there are others, so a positive ANA alone doesn’t make the diagnosis; they should screen specifically for SS antibodies. The other test was one with a paper strip to see if I made tears, and finally they could do a biopsy of saliva cells (from your lip) if you don’t have the antibodies but still have symptoms and they want to make the diagnosis. If your rheumatologist won’t order the test maybe your primary can since the ophthalmologist thinks you have Sjogren’s.

      Whew! That was a lot. Having said all that, there is the matter of treatment. I’m on Plaquinil, and I really improved quickly even though I was told it would take months. I’m also taking Myfortic, which is the same drug as CellCept in a form that my stomach can tolerate. Methotrexate didn’t work out for me, but I do think I felt better before complications forced me to stop.

      Good luck. I’m so sorry you’re dealing with all of this. Hugs.

  10. Thank you so much for your reply. My eye doctor has done the paper strip test and he said I have Sjogren’s. I told my Rheumatologist that and she said, “you don’t have Sjogren’s.” She’s never done any actually testing for marker’s. I also have most of the symptoms for Lupus. Not all people will show the “markers” for Lupus, therefore the doctor must go by symptom’s. All of my other doctor’s agree that I do have an autoimmune disease, but they can’t put the exact name to it. And, my Rheumatologist is supposed to be in the top 5 in the nation…………….ha ha….I could tell you more stories about her, but just trust me…………I’m sure you’ve been down this road. What kind of doctor, other than a rheumatologist would do the biopsy for saliva cells? Would that be a Dermatologist? I’ll see if my primary care doctor will do the blood test for SS antibodies. I have been on Plaquenil, but unfortunately, it didn’t really do much for me. I asked my Rheumatologist about Methotrexate because my mom is on that for a different autoimmune disease and I was told they don’t use that for people like me…………….I need a new Rheumatologist, but I’ve been to other’s and it seems they are all alike……………..sigh…………….I’m sure glad that Plaquinil works well for you!! I took it for several months and just decided I didn’t want to be putting anything else into my body that’s not helping. I do thank you so much for all this very helpful information. Hope you’re having a good day. Take care. Peace out. XXXX 🙂

    1. I am so sorry you are on the autoimmune disease bus too. It can be so very frustrating. I also have a lot of symptoms of lupus, but when the battery of tests was finished I actually was diagnosed with systemic sclerosis (scleroderma) and Sjogren’s too. While Sjogren’s can cause gastroparesis, mine is almost certainly due to scleroderma as it causes smooth muscle damage, which it the type of muscle in stomachs. I also have trouble swallowing and a gut that basically hates me. Since you also have severe gastroparesis I’m wondering if you have been tested for scleroderma. As it turns out Sjogren’s is common with scleroderma, but it hangs out with lots of other conditions.

      I changed rheumatologists last year because the first one pissed me off. He was dismissive of my symptoms and disregarded test results that didn’t fit his idea of what was wrong with me. Bad doctor!! Bad!! (In my preretirement life I was a science teacher. Can you tell? You never throw out data that you don’t like!) Especially since I was struggling to breathe, had chest pain, heart palpitations, and blue lips. Once I got a referral to a pulmonologist I was put on oxygen right away; it was so bad she referred me to palliative care. Thankfully, I’m better and no longer need their help. The moral of the story is, fire your doctor and get a new one if you need to.

      Once again, I think that your primary can order the screening blood tests. I remember that the rheumatology panel that was run on me had 22 different tests. Two were positive and the rest is history. I also talked things over with the primary about my concerns with the rheumatologist and she referred me on to another doctor who is working out much better for me.

      I was told Plaquinil takes months to make a difference. After 6 months I was making tears and saliva again. I still have flares, but I am in much better shape than I was when I was first diagnosed.

      Hugs!

      1. Sorry for the late response. I’ve been taking a break from all social media for awhile. Sometimes, I just need a break from everything. Unfortunately, that includes neglecting my blog. Last October, I fainted and was hospitalized for a week. I got hooked up with the best neurologist ever! I was finally in the right place, at the right time, with the right doctor. He’s working out GREAT. I recently had a tilt table test, breathing tests, and a sweat test done. Last Friday, the nurse finally called me and said that the sweat test was positive for what could be a couple of different things, but they were neurological things. Thank you, Jesus!! My neurologist will figure me out, he says. At my last visit he said that we are going to start working on figuring out what autoimmune disease I have. He’s an older gentleman and I just pray he doesn’t retire anytime soon. He’s very, very interested in my case. He’s already diagnosed me with Dysautonomia, which makes a lot of sense with everything going on or not going on in this sick body of mine.
        I also have swallowing problems; Esophageal Motility Disorder. I have no motility from one end to the other……..sigh………………I just want answers…………..call it cancer…….just call it something, so I can get the proper treatment before it’s too late. I have a lot of faith in this neurologist. I may talk to him about getting back on the Plaquenil. I don’t think I was on it long enough to see if it truly was going to work for me. What kind of testing is done for Scleroderma? Is it just lab work or what? This doctor is amazing. Every time I go see him, he’s in the room with me, no less than an hour. He actually sits down, talks, observes me, and listens. Just by watching me talk, he’s noticed some things. Things like this are very important for doctor’s to do, but they just don’t because they over schedule, which is so unfair to those of us who are chronically ill.
        I’m sorry you had that really bad experience with that worthless doctor. It’s just really scary the way they send us on our way with very serious symptoms………………..My primary care doctor is very good, too. So, a few good doctor’s isn’t bad, but my list of doctor’s is rather long. I’m not going back to that rheumatologist because my primary care doctor can do everything the rheumatologist was doing and not doing.
        I do thank you for all the helpful information. It’s all written down now, and I’ll talk to my Neurologist and Primary Care doctor about all of this and see what happens next. Hope you’re doing much better. Take care. Peace out. 🙂 XX

      2. Wow. You have a lot going on, and it is just exhausting to be so sick without concrete answers. I’m glad that you are getting some progress, and that you are happy with the neurologist.

        The scleroderma test can be bloodwork: an ANA (anti-nuclear antibody) test is standard, and then back up tests for specific antibodies associated with the disease if it is positive. There are auto-antibodies for Sjogren’s too that can be picked up with a blood test. There are other specific physical features that will be picked up by a well trained rheumatologist, and to be clear, not all rheumatologists are equal. It is best to get to a scleroderma specialist if you are diagnosed. I am not going to one because I am in Kaiser, but I am happy with my new rheumologist and she has be stable right now. I want to mention that I had ALL the features of limited systemic sclerosis, and had been experiencing them for some time, when I walked in and asked to be test for lupus. My internist, who is very good, did not pick up on them, but once I got to the rheumatologist (following positive bloodwork) I was quickly diagnosed as a classic case.

        I also have Esophageal Motility Disorder; it is a scleroderma thing, and lots of neurological issues crop up with scleroderma. I think that it would be nice if your PC doc could order a full rheumatology panel to test you for everything, since autoimmune diseases have lots of overlaps.

        The Plaquenil really took a long time to kick in; they told me 6 months to get the full effect. The downside: my flu shot didn’t protect me last year. 😦

        Hang in there!! Hus!

      3. Sounds like you have a lot going on, too. I thank you, once again, for this valuable information. Getting these diagnoses is so difficult because, like my Neurologist said, not everyone tests positive for these antibodies (marker’s). There’s those that are serologically negative and the doctor has to look at your entire medical history, talk to you, listen to you, observe you, just as my neurologist is doing. I have a very good feeling about him. He said he’s going to start on figuring out the autoimmune disease that’s causing all these other disease’s. I see him on Monday, and I cannot wait. I’ve never been so eager to go to a doctor. After awhile, you just kind of give up on finding that doctor, which is exactly what I did, and he found me, when I was in the right place, at the right time. Now, if he can do what he so desperately wants to do, which is to figure me out and to help me, I will be so grateful. I’m going to talk to him about all of this. I really appreciate you responding with all this great and helpful information. Take care. Hope you’re having a “good” day. 🙂

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