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My Autoimmune Disease and Quilting

Okay, so I will apologize in advance for the length of this post. It's long, but in it I am going to share my journey. I find whenever I speak publicly about being diagnosed with Sjogren's Syndrome it helps people - and that my friends is what this blog is all about!

Here's a photo of a recent project I made to make up for it. I can't have some long post with no photos, right? The purse is made using Sara Lawson's Aeroplane Bag Pattern. I made it my own with a bunch of geeky applique.



 Okay back to my story - here goes...

In early January of 2013,  I woke up one morning and my fingers were swollen like sausages. I couldn't get my wedding band off. My fingers couldn't bend. The swelling didn't go down until about lunchtime. The next day when the same thing happened, I started to worry. 

I have a friend I have known since high school and she was diagnosed with Psoriatic Arthritis just months before and thankfully she is very open about her health issues on Facebook. She mentioned that her fingers were like "sausages" in the morning and she ignored it for nearly a year. Because of her openness, I knew it was not a good thing to postpone diagnosis, so I immediately called my doctor and made an appointment. (Thank you H!) That day the swelling in my fingers didn't go down until nearly 3pm. I was beginning to panic by the third day when it was more of the same. It was now interfering with my ability to work and turn assignments in on time. Not good!

When I spoke with my husband, he raised several concerns pointing out several things that had been going on for more than a month:
  1. Since early December I kept feeling like I was "coming down with something". Our daughter had been fighting a stream of colds and I just assumed I was fighting her germs but I never gota full blown cold, just a general feeling of fighting something.
  2. Two weeks earlier, I couldn't get out of bed on Saturday. Again I thought I was fighting something. When hubby got home from his morning run, he said my lips were blue. He said it scared him, but he didn't say anything to me.
  3. My joints had been more achy than usual. I have had arthritis for many years and had controlled it for 5 years simply by becoming vegetarian. Suddenly, I was fighting joint pain again. I thought it was due to the weather. 
  4. I was thirsty. No, I mean, COULD NOT get enough fluid during the day. I had taken to drinking herbal tea all day long just because I was getting tired of water. I was drinking at least 80 ounces per day and was still thirsty.  
  5. Slight discoloration in hands and feet at times that looked a bit blue.
  6. I had four bouts with major canker sores in the previous 8 months. I would get one canker sore and then within a few days I wouldn't be able to eat. The most recent bout, I had 20 canker sores at the same time.
I was really grateful that my hubby was able to help point out these syptoms. I wasn't noticing that anything was wrong or not normal. I was just being a busy mom during the holidays. He helped me piece together what I thought was unrelated and made me realize that this was not normal.

I visited my doctor and she was quiet while she listened to me read off the list that I promised my husband I would show her. She said she would order blood work. Normally, she sort of works out what she is thinking aloud. This time however she was quiet.  It made me nervous that she wasn't her usual chatty self. When I called her on it, she simply said that it sounded like something autoimmune was happening and we would wait for the blood work. 

The blood work came back and I got an email with the results before the doctors office called. I had a positive ANA and elevated SSA and RNP. I had no idea what that meant. 

Later that day, I got a call from a nurse at the office that I needed to make an appointment with a rheumatologist. "I had a few elevated results" is what she said. 

I was given numbers for two doctors to call. Neither would be able to see me before mid April. It was early February. There was no way in hell I was going to wait months not understanding what my blood work meant and having my hands swollen every day. I would lose my freelance writing gig for sure. I went into panic mode which resulted in becoming the "google doctor".

Finally, I decided to tell my editors at GenQ, Jake and Melissa what was going on. They were more than supportive. Jake gave me a firm talking to about trying to find another doctor - she even offered to do the research for me. I kept googling and calling until I found a doctor that is in the same office building as our pediatrician and he could see me the following week! Convenient and nearby!

My appointment was on February 25th. My hubby came with me to the appointment. By now, I had realized that it was narrowed down to only a few autoimmune disorders. Rheumatoid arthritis, Lupus, Psoriatic arthritis, Sjogren's Syndrome, or Mixed Connective Tissue Disease. Shit.

My doctor was very kind. He is a bit chatty and seemed to want to talk cars with my husband. He looked at the blood work and ordered more. He said we needed to get a better look at what was going on. He asked if my mouth was dry? Yes. What about my eyes? A little bit maybe...

Sjogren's Syndrome (pronounced SHOW-grins) is the most common autoimmune disorder affecting 4 million Americans. Nine out of ten people diagnosed are women. It affects your moisture producing glands causing dryness in the eyes, nose and mouth.  It causes joint pain and extreme fatigue. It can affect other organs of the body and there is a higher risk for developing lymphoma. The average length of time it takes to diagnose Sjogren's is 4.7 years. This is because most doctors aren't very well versed in the symptoms. This is the disease Venus Williams was diagnosed with when she was forced to drop out of the U.S. Open. There is no cure. (Visit the Sjogren's Syndrome Foundation for more information)

Since my diagnosis, more often than not I feel lucky. You see, I was about to schedule back surgery. I had been living with debilitating lower back pain that limited my activities so much, I had convinced my doctor to give me a handicap sticker for my car just for the month of December so I could get my holiday shopping done. I couldn't do my grocery shopping and make it back to the car without limping and hanging on to the cart for dear life. I couldn't exercise, walk, even sit for too long or I would be in pain for days afterward. I was miserable.

My rheumatologist set me up with samples of Celebrex while we waited for the blood work to come back. Within days my back pain disappeared. Within two weeks I began going to the gym. I hadn't been able to exercise with any regularity in 4 years! Too bad I was having terrible side-effects. Within a few weeks, I had to stop taking Celebrex. My meds have changed many times since then because part of Sjogren's is having an increased chance of having reactions to medication.

he challenge for me or anyone with this type of autoimmune disorder is that I don't look sick.  Some days I feel like I have sand in my eyes. Some days no matter what I do, my mouth feels like I haven't had a drink in days. Worst of all, some days I wake up and I feel like my blood has been replaced with lead. For me, the fatigue is probably the most challenging of all of the symptoms.

I am still trying to figure out how my body is reacting to Sjogren's. Venus Williams described it as getting into a car for a long journey and the car has a broken gas gauge. You don't know how far you can go. Sometimes the simplest thing will just exhaust me. Going to Market in Portland gave me a full-blown flare. I began getting mouth sores. I was dragging. My jaw hurt. I felt miserable. And I couldn't stop - Market is only a few days and I had a lot of ground to cover and products to find. I ended up laying in bed for days afterward.

If you get nothing else from reading my story, I hope that all of you reading this really understand this:  

Do not ignore symptoms

Fingers swelling, joint pain, feeling like you are coming down with something repeatedly and never getting a cold or flu, repeated mouth sores, dry eyes, yeast infections or any other odd symptom is not normal. Don't wait it out, go to your doctor. It is important. YOU are important. Listen to what your body is trying to tell you. Put yourself first.

Tomorrow, I have some exciting news to share and then I will begin product reviews! Thanks for reading!

Happy Quilting,

Tracy 



Comments

  1. You've described many of my days. As you know I have Psoriatic Arthritis. I certainly understand what you have been going through. Thanks for sharing, it does help others to know they aren't the only one.

    ReplyDelete
    Replies
    1. It certainly is hard and I really wish we didn't all have to go through this. The isolation is difficult. Thanks Kat for your support!

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  2. Tracy, you just described mammy of the symptoms I go through on a daily bases.I think I'll make an appointment with my doctor. They have attributed all my symptoms to side effects of chemotherapy 11 years ago. That's how long I've been dealing with this. Thanks so much for sharing!

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  3. Tracy, you just described mammy of the symptoms I go through on a daily bases.I think I'll make an appointment with my doctor. They have attributed all my symptoms to side effects of chemotherapy 11 years ago. That's how long I've been dealing with this. Thanks so much for sharing!

    ReplyDelete
    Replies
    1. Sending you all of my empathy - boy do I understand!

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  4. Traci, just found your blog via TQS. So glad you got a speedy diagnosis and that your hubby was able to fill in the symptoms picture. So often it is those around us that notice changes we shrug off. Wishing you successful management of your SS. I have RA and look forward to tools and tips for sewing. I have a couple favorites already!

    ReplyDelete
    Replies
    1. Please share with me what you like - I'd love to share with my readers! Thanks for commenting!

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  5. Thank you so much for sharing your story with us Tracy! And, even more, THANK YOU for starting this blog!!! I think I may have contacted you a year or so ago after you may have written an article for GenQ about adaptive sewing. I have been looking for a place like this since then! I have been living with Fibromyalgia for at least 16 years, maybe longer. This past fall I was diagnosed with multiple degenerative eye diseases.....which explained why I kept falling, tripping, and banging into things. We are still trying to find the right combination of vision supports, but am definitely struggling with losing my independence. The quilting community is one I discovered about 5 yrs ago and my online friends have been so wonderful! I can't imagine losing this connection. So, a HUGE THANK YOU to you for being brave to address the issue of hidden (and obvious) disabilities and how we can continue with our hobbies that give us joy and freedom :) Blessings to you as you continue this journey!

    ReplyDelete
    Replies
    1. Thank you Sharon! My sister is struggling with vision issues also and I know sewing is helping her cope. The sewing community is so incredibly loving and supportive, I am happy to hear it gives you comfort. Please feel free to let me know if there are any products you would like me to review or that you find helpful. Most of all, thatnk you for your encouragement!

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  6. Hi Tracy, I found you through Teri Lucas' blog. I've probably had fibro since childhood, but I was formally diagnosed about 8 years ago. Thank you for starting this blog! I found the following story several years ago; hope you enjoy it. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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