My Sjogren's Survival Kit

I’m one of the approximately 8% of Americans with an autoimmune disease. In case you or someone you love has the one I have, I’d like to share what I consider my Sjogren’s Survival Kit, items that help me deal with the second most prevalent autoimmune rheumatic disease.

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Sjogren’s Survival Kit

I’m not going to discuss prescription medications as those need to be tailored to the individual by your medical team. However, there are a number of items I’ve found to be helpful in managing the symptoms of this disease and I thought I would share.

Eyes:

Dry eyes is a common symptom of Sjogren’s so an important part of my survival kit includes eye care.

eye drops – There are a number of options, both prescription and over-the-counter. I keep bottles in my purse, by my reading chair, in my Reading Bag, and in my bedside table.
eye mask – A microwavable moist eye heat mask is an amazing help for dry eyes. This is the one I have.
pre-moistened eyelid wipes – My husband’s eye surgeon prescribed these for him to use and one day when my eyes were super itchy and irritated he gave me one to try. What a big help!
humidifier – If your house is really dry, especially in the winter with the heater going, a humidifier can be very helpful for dry eyes (and skin!).
sunglasses – Sensitive eyes need a good pair of sunglasses. They not only protect from the sun but also provide a bit of protection from wind which can make dry eye worse. If wind is a frequent issue, consider a wrap-around style.
reading glasses/blue light glasses – I’m now at the age where I need reading glasses for small print, especially to avoid eye strain. You can get readers that also block blue light from screens which is a good idea.

Oral:

Along with dry eyes, dry mouth is another uncomfortable symptom of Sjogren’s Disease. Not only is it uncomfortable, it can contribute to dental decay. Here are some of the items I use to combat dry mouth.

water bottle – I always have something to sip on nearby, including on my bedside table overnight.
Biotene or Allday oral spray for dry mouth – I like to keep one in purse for those times when I can’t have a water bottle with me and my mouth is dry.
sugar free gum – Chewing gum can help increase saliva secretion.
xylitol mints – Another option for dry mouth
sugar free lemon candies- Lemon is great for increasing saliva.
lip balm- Along with dry mouth, dry lips is a frequent issue so I always have lip balm handy.

Skin:

Dry skin is yet another common feature of Sjogren’s Disease.

Aquaphor or Vaseline – I use one or the other of these especially on my feet.
body lotion – There are so many options. Eucerine Instensive Repair lotion is what I’m currently using.
body oil – Neutrogena light sesame oil is a good choice right out of the shower.
hand cream – Like lip balm, I tend to have small tubes of hand cream all over the place.
vitamin E oil – I adore this oil by JASON and have gone through several bottles. I use it on my face, neck and back of my hands a couple of times a day.
sunscreen – Sun sensitivity is a frequent issue with several autoimmune conditions.

Health:

Anyone with an autoimmune condition knows that we’ve got enough to deal with without adding the latest respiratory illness making the rounds.

hand sanitizer – Washing hands with soap and water frequently is important but when that isn’t an option, I like to have hand sanitizer available. David and I both keep bottles in the side pockets of our vehicles and I have one in my purse.
masks/respirators – A well-fitted N95 or KN95 respirator is a very important part of staying healthy when out in public places.
nasal sprays (saline and anti-viral) – There are several nasal sprays available that may be helpful in preventing respiratory illnesses. At the very least, a plain saline nasal spray helps moisturize the nasal passages.
supplements – Be sure to check with your doctor before adding supplements to your routine. Of course, getting nutrients via food is always best but sometimes that can be challenging. If you have a nutritional deficiency, supplements can be very helpful. For instance, vitamin D deficiency is common in Sjogren’s and other autoimmune diseases. Fish oil (omega-3) has demonstrated improvement in dry mouth and dry eye symptoms. Again, check with your doctor. This blog post is not to be taken as medical advice.

Comfort:

blanket/throw – Temperature regulation can be an issue for me. I like to have something over my feet and legs when in my chair but am often too hot. This 100% cotton muslin blanket is my new favorite thing. It is also light enough to easily fit in my suitcase when we travel.
handheld fan – This is a little trick I learned in New Orleans. Keep a folding fan handy to use when you feel overheated. Effective and pretty! Here is a link for some.
slippers – A cozy pair of slippers/house shoes is essential for me. First of all, I heartily dislike socks even if it’s cold so slippers are good alternative. Second, they protect carpet from the Aquaphor or Vaseline that I slather on my feet. These are my favorites because they are very comfortable and have a rubber sole.
relaxing hobbies – Fatigue is an ongoing issue so it’s nice to have hobbies to keep me occupied when I don’t have much energy.
variety of teas – As my regular readers know, I absolutely adore tea. There is little that brings me more comfort than a nice hot cup of tea. Earl Grey is my standard but I enjoy having a variety of teas on hand. I really like this lemon herbal tea. It contains 100% of the daily requirement of vitamin C.

Health Journal:

I’ve recently begun keeping track of my daily symptoms and other medical information in a dedicated planner. I think this will be helpful when it comes to sharing information with my doctors. There are lots of options available. This is the one I’m using:

Daily Medical Planner

I hope you’ll find these suggestions helpful if you, too, have Sjogren’s Disease. And if you have other ideas I’d love to hear them!