Slow Down, Be Proactive With Doctors… and Take Care of You

A Mom's Life with Sjogren's, Fibro, Raynaud'sJanuary 2013, I turned 40. I had planned on celebrating, but I was too sick.

One month later I finally learned what caused the dizziness, severe sudden fatigue, joint stiffness and pain, losing my upper teeth and a few of the bottom teeth, hair loss, light sensitivity, dry nose and eyes and my severe multiple food allergies that came on suddenly. I have primary Sjögren’s syndrome. I was also diagnosed with fibromyalgia and this year added on Raynaud’s.

My symptoms started in 2002 after I had my fourth child.

It started with severe joint pain in my wrists to the point of not being able to grasp a cup.  I was told it was tendinitis and given two wrist braces that didn’t help.  Then while nursing my baby I had to stop due to frequent bouts of plugged ducts and mastitis.  Not even the medical college could help me continue to nurse my son.  It was a huge mystery considering I nursed my third child for 18 months five years before.  Now I know why.

In 2012, while attending college and working full time, I had severe stiffness in my hips that worsened while walking.  I eventually had to stop my daily three-mile walks.  But walking to class was getting difficult too.  Then I dropped 25 pounds in a month, started losing my hair and became so tired I had to put college off.  I went to my doctor and was told to see a pain psychologist and she would only treat one symptom at a time!  I changed to my friend’s primary care doctor, who listened.  She did a basic autoimmune panel and most were positive. My diagnosis came soon after.  Speak up if you don’t feel heard!

When this disease first started in 2002, things quickly spiraled out of control.  My teeth started crumbling away.  It was fast.  My first tooth was pulled in 2006.  And ended in 2012 with getting my whole upper teeth removed at the age of 39.  This past year, I’ve had three more bottom teeth pulled.  I’m so tired of the dentist.  But my advice is: go, definitely every 6 months, but if you can pull it off — go every 3 months.  Having dentures is better than hurting teeth, but having all or even some of your natural teeth is way better.

In 2010, I was diagnosed with food allergies.  My allergist tested me first for tree nuts and peanuts, which were positive, along with reactions I’ve had, like blisters in the mouth, throwing up, and dropping blood pressure for at least 20 years.  Shortly after, I was positive for soy, black beans, pinto beans and peas.  A year and a half later came mango, wheat, rice (which landed me in the ER),and egg this past summer.  My diet is so limited, but most of the time I’m too tired to cook, which is so frustrating.  I try to do big batches when I can cook and freeze leftovers so that on nights or days I’m busy I have enough food to eat.

Multiple food allergies make all of this so much more difficult.  I cannot eat any pre-packaged foods and everything down to my mayonnaise and ketchup have to be homemade.  I do have a blog where I share some recipes, talk about food allergies and autoimmune disease.  It’s called, Bubble Girl: Navigating The World in a Bubble and it’s at www.bubblegirlhappily.blogspot.com.   Come visit me there!

Now I’m working on getting some energy back by eating well, gentle yoga, walking and taking time for me.  I started Restasis for my dry eyes and I will be starting Plaquenil, not only to help slow the progression of Sjögren’s, but both my rheumatologist and allergist say it will keep me from getting new food allergies.

I picked up some hobbies again that I had put on the back burner while working full time.  I did cut back my hours to 30 a week to help my fatigue and give me time to do appointments and take care of myself.

Managing four kids while being sick has been difficult.  Before I knew I had Sjögren’s, I barely got through my day and always wondered why I was so tired or thirsty.  Once I knew what was wrong, I was able to take breaks more often to help me get through the day.  Since my kids are mostly older teens and adults now, I had them do a little more around the house or even run to the store for me.  I even had one drive me to a doctor appointment because I was too tired to drive.

Now half of the kids are moved out, so I have more time to rest since the house stays clean longer.  My husband also helps manage getting chores done by talking to the two kids at home and giving them a chore for that day.  He helps around the house when he can, but we work different shifts and he works a ton of overtime.  So my kids are my help while my husband works extra hours so my body can rest.

My advice to anyone newly diagnosed with autoimmune disease?  Slow down, be proactive with your doctors, speak up, eat healthy and take care of yourself.

About the Author
Christina is an accounting professional who lives near Seattle, Washington with her supportive husband, kids and furry kids. In her free time, you may find her cooking, blogging, quilting, practicing yoga, or bike riding.

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

Comments

  1. Cindy Horton says:

    I am 58 and I also have Primary Sjogrens, Raynauds, and Cervical Dystonia. I was able to go on disability which has helped with my depression and fatigue.

    • Hi Cindy!
      I am trying to get to that point where I can quit working. It’s becoming too much to work 30 hours a week. ( 40hours a week had me with nausea daily and some vomiting.)
      Plus I literally live to be able to work. Having to cook my meals in preparation every weekend, it’s exhausting.
      How did filing for disability work for you if you don’t mind me asking?

  2. I’m glad you are doing better. Something that is common to autoimmune regardless of the specific diagnosis, is poor gut health. As a Nutrition Therapy Practitioner with celiac disease, I can’t urge strongly enough, if you aren’t already, follow a protocol specifically for gut healing. Specific Carbohydrate, GAPS, and Autoimmune Paleo are among the most common. You don’t have to wait for more allergies to show up, which they will (sorry, but true), and possibly more diseases with them. If you look up “leaky gut” and “intestinal permeability”, you’ll see what I’m talking about. Healing and sealing the gut lining keeps large, undigested molecules from getting into the bloodstream where the immune system can see them and launch an attack.

    • I cannot follow GAPS or Autoimmune Paleo due to my food allergies. My allergist does not want me eliminating foods since I’m already restricted and restricting could cause allergies to those foods and I do see a nutritionist. I’m grain free, legume free and nut free already due to my life threatening food allergies so I’m closest to AIP. I do not consume nightshades either. But I cannot eliminate dairy or buckwheat. I’ve been doing this since 2010.

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