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!!

 

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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.

Rare Disease Day

Today was Rare Disease Day. I woke up with notes in my email box reminding me that this was the big day. Oh, yeah. I guess I should say something about it on the blog, but what? I mean, I do have a rare disease, but why should anyone else care about it?

rare disease dayI spent most of the day thinking about that. I worked on the loom (weaving is right around the corner!), cleaned the house, cooked a yummy dinner, and pondered the relevance of rare diseases throughout the day. For a while in the late afternoon I almost started writing, but ended up knitting instead. Now it is evening and I think that I might be there.

You see, anyone dealing with a chronic condition eventually comes to terms with their altered life. Grace under fire becomes the status quo. We deal. We lean in. Maybe the big success of the day was taking a shower or getting dinner cooked, but by golly we did it!!

If you have a rare disease, it is a little harder yet. People have never heard of your condition. Your doctor may have never treated another person with your disease before. Your friends and family sometimes suspect that you might be an attention-seeking hypochondriac. You wander the internet looking for answers. There is little research being done for your disease because so few people are impacted by new drugs or treatments. In a world with finite funding for medical research it makes better sense to put the money where the most patients are: cancer, diabetes, heart disease, asthma. I get it.

The purpose of Rare Disease Day is to shine a little light on the many, many conditions that are classified as “rare”. It is also a campaign to raise some awareness about the human impact of being a patient with one of these conditions. To be frank, it kind of sucks!

stuff
Fat swollen fingers with thick stiff skin are part of my condition. On this day I accidentally triggered a Raynaud’s attack that cut off the circulation to one of my fingers. 

You see, rare diseases are also referred to as “orphan diseases”. You do feel like an orphan. Alone, alone, all alone. I’m lucky to be hooked up with other people who share my condition, but that is because I live in a large metropolitan area. I have systemic sclerosis*, which is considered the most severe of the diseases in rheumatology. There are only 100,000 of us in the United States (which, if my math is right, is 1 in 50,000 Americans), so if you live in a small town chances are you will never find another person who has the same illness that you do. I am lucky.  I belong to a support group and have found online resources, the most important of these being you people who take the time to read my blog.

Here is what I decided is the most important message that I should put out on this day set aside for me and all the many, many other people who deal with a condition/illness that no one has ever heard of before. If someone says, “I have (crazy-ass disease you’ve never heard of before)”, don’t say, “I’ve never heard of that!” in a dismissive manner as you turn away. Say instead, “What is that?”  Invite the person that you are talking with to teach you about their unusual condition. Really, it will mean the world to them.

They will feel less like an orphan if you do.

*Systemic sclerosis, which is serious form of scleroderma, is an incurable, disabling, and progressive autoimmune disease that causes inflammation and scarring of the connective tissue of the skin, blood vessels and internal organs. It is often fatal, but in recent years the survival numbers have improved due to new therapies (I love my immunosuppressants!). Currently there is no drug to directly treat systemic sclerosis but there are drugs and treatment strategies on the way. Right now there is a bill in Congress to fund scleroderma research called the Scleroderma and Fibrosis Research Enhancement Act, H.R. 3666.

Cold weather ready: socks and indoor plants

The October 2015 Socks are done!

October Socks
These are the Om Shanti Bed Socks by Alice Yu. That cool yarn is Serenity 20 by Zen Yarn Garden. They are extremely comfy and the snug little ankles keep them on my feet overnight. Perfect for the sleeper with cold feet. (Yep, that’s me. Thanks Raynaud’s!) Here are the project notes on Ravelry.

If you are interested in the history of these socks, here are the related posts:

I am almost caught up with the resolution socks; last night I shopped the stash to pick the yarn for the November Socks and am torn between two different patterns. Next week I’ll make the decision, wind the yarn and cast on. Here’s the problem: I found a wonderful blue yarn, but there is also this gold/purple/brown yarn that looks like the perfect color for November… The blue yarn works for the pattern I planned to knit, but the autumn colored yarn is so perfect that perhaps I should give it and a cute lace patterned sock a try… Maybe I should make two pairs of socks this month. 🙂

I worked like a maniac this week on the bed socks because it has suddenly become cold outside. We had a nice snowfall Thursday, and the last two nights have gone well below freezing. That was it; I had to bring some of the outdoor plants into the house for the winter. I went to the local Home Depot store and bought some plant grow lights for them, and with some care and rotation under the lights I hope to keep them going until next spring. Here’s the winners in the survive the winter plant lottery:

Pink daisy
The pink daisy-like plant moved into the bedroom by a window. Looks happy, doesn’t it.
Geranium
The geranium is also getting parked in front of the bedroom window where it will hopefully get enough light. I plan to let both plants visit the plant lights in my craft room a few days a week for a light boost.
Orchids and blooming plant
I pruned this plant back to about half its height and put it in front of the window in the craft room. The orchids have been doing pretty well in this location: both orchid plants bloomed for me last year. The (very cheap) wood shelf unit actually has three shelves; I bought clip-on grow lights that I can move around to give the plants light from different directions this winter to supplement the natural light.

I have more plants shoved onto the two shelves below this one but they are just too messy to show off right now. I need at least one more plant grow light to make things work, and the lower shelf plants still need to be pruned back. I’m pretty sure that the plants will drop a lot of leaves as they adjust to the lower light levels, but they should all make it and hopefully will manage to produce some winter blooms. One of the plants on the lower shelf is a rose bush that has survived indoors for three years in a row. I know he’ll make it! The pink flowering plants are also producing a lot of scent which makes me just happy. It’s like having a little piece of summer all year long.

All right winter, bring it on. I am ready!!

The Golden Hour

It’s here! It’s here! The most wonderful time of the autoimmune disease year. Fall colors, cooler (but not cold) temperatures, sunshine levels that won’t make me sick, pumpkin spice lattes at Starbucks, and wood smoke. Pumpkins and autumn squash soup. New yarns at the yarn store and patterns for warm sweaters. Ugg boots!! Without fail I have a surge of joy and energy at this time of year. Just like the golden hour in photography, that time in the evening when everything is softened and has a glow of light to it, this is my golden hour of the year.

Sunset
Look at this sunset! I took the picture while sitting at the stoplight. Doesn’t it make you happy? The golden hour is the hour before this as the sun was just dipping down towards the mountains in the west. Here is Colorado it makes the Rocky Mountains look softer and plush; there are sunbeams and everything looks wonderful.

What’s wrong with the rest of the year you ask? Well, let me tell you: winter is a beautiful time of year, but for a person with systemic sclerosis and Raynaud’s disease, it is a miserable battle to keep extremities warm an opportunity to rock the wool socks, shawls and fingerless mitts. This year I plan to roll out some exceptionally warm longish sweaters; I have the yarn all ready to go. I have patterns for fingerless mitts that will go up to my elbows. I bought fleece Cuddle Duds. I am really going to try to handle the cold better this year; last year I rolled out of winter with more severe symptoms than I had in the fall.

Rose
Look how great this rose looked last spring. It should be a wonderful time of year for me, but…

Spring is a time of gardening, hope and struggle for me as I try to get the garden’s flowers (and roses!!) going while slowly accepting that new debilitating symptoms that I thought were related to the war against cold, but which remained in the balmy days of April and May, were actually real things. Darn! No wool sock or hand warmer will fix my problems… by the time I make appointments or call for help it is already summer.

Ugh! Summer! I was a teacher, and summer was that wonderful time of renewal and rebuilding that kept me going year after year. Now summers are so fraught that they seem to pass in a blur of lawn watering and visits to Kaiser. Really, I am just a mess all summer long. Here’s the highlights of this year:

  • Summer started with me just a few weeks into the drug methotrexate (which I got after making a call for help in early May…) I was losing hair and taking it easy two days a week because of the drug’s side effects. Still, by juggling the drug schedule I was able to work a summer camp teaching kids how to spin and felt fiber. So fun. The camp was only 2.5 hours a day so it was perfect.
  • In July I developed rare bone complications from the drug (well, don’t I feel special!) and ended up at an acute diagnostic facility. That was the end of the methotrexate.
  • Icky symptoms reappeared with a vengeance. I had to wait a few weeks before I could start the new drug. It’s called purgatory drug holiday .
  • UTI strikes. Seriously!! Antibiotics, barfing and yogurt happened.
  • Rheumatology appointment: he starts me on CellCept with some reservations about whether my gut (which basically hates me…) can handle it.
  • I start the pills.  Woohoo! No problems except after two days…
  • …UTI strikes again. Oops! I stopped the CellCept, gobbled antibiotics and yogurt, and skipped the barfing. Take that you ill-behaved gut!!
  • Started CellCept again the next week. Hello heartburn, my old friend.  Middle of the night vomiting and belly pain?  Nope, nope, nope. My gut has definitely vetoed this drug! I didn’t even make it a week before I emailed my rheumatologist to ask for something else from the land of pharmacological wonders.
  • Well, what do you know. There is another version of the CellCept that is a time release version that I should be able to stomach (see what I did there?). My rheumatologist and I had an email chat and he ordered it up for me.
  • …and the insurance declined to approve it. What?!! I wanted to send my gut on over to have a chat with them. Two visits to the pharmacy, two phone calls and an invocation of the gastroenterologist did the trick. I scored the pills on the last Friday in September. Yep. That was the end of summer and it is now time for the golden hour.

I started the time-released version of CellCept 10 days ago. You know, I think that I feel better already. My knees have stopped hurting! I seem to have more energy. I think that there is less edema in my arms. I have started cleaning out cupboards and stuff. I am happy.

Maple leaves
Look at these leaves! This is the maple tree in my back yard.

This is my year of systemic sclerosis (scleroderma): cold, pain, hope, struggle, persistence, and wonder. And this, my friends, is the best part of the whole dang year. I am full of joy with every red leaf and pumpkin that I see. I know that the snow is coming, but what the heck.

Today, today I am in the golden hour.