Slowly Rejoining the World

Cartoon Found Here

I had a very rough six months from the end of August until the end of January when I was quite ill. My neurological symptoms from autoimmune disease were particularly severe and I was in lots of pain (more discussion of this to come).  As a result of my doctor prescribing a new treatment, I am thankfully having improvements in my symptoms and I am rejoining the world.

Now that I am feeling better, I have slowly been able to see friends and to start writing this blog. It is an exciting change and nice to be able to do small things again.  I have the desire to do everything that I can and to make up for the time that I have lost.  But I need to pace myself and not over do it so that I can continue to feel good.  For me, part of the struggle of living with autoimmune disease is figuring out my limits and knowing when to stop.  Accepting what I can and cannot do.

The reality is that I cannot make up for the time that I lost, but I can make the most of the days when I feel good.  And even though I am feeling better, I have to remind myself it is a still OK to ask for help from family and friends.  I don’t want to take on too much and end up fatigued.  I must admit that I had been known to try to take on too much even before I became ill.  So I guess of all of this self-regulation is character building--right?

Hold the Fries

This post is not about what you might expect from the title; French fries and why you should not eat them because of their high fat, salt content, etc.  Instead, I am writing about food allergies.  In the same few years that I developed my autoimmune disease, I also developed a number of food allergies.  While my doctors can't say these reactions were caused by my disease, they agree it's likely there is some connection with my immune system so revved up. Although I don't know if there is any proven medical relationship between the two, I have heard anecdotally from several others with autoimmune disease that they also have food allergies and food sensitivities.  

One of my allergies is to onions and the whole onion family of foods.  This is my food allergy that certainly makes it hardest to go out to eat because onions, scallions, leeks, shallots, and chives...are quite a common ingredient. Ok, no onions. I finally figured it out. But I kept having serious allergic reactions when I would eat French fries (one of my guilty pleasures). At first it made no sense to me – I can eat potatoes, oil and salt so what was the problem?


What I soon discovered is that restaurants often cook fries in the same oil as they cook a number of food items including onion rings and fried chicken fingers (which often have onion powder in their coating). Many don't even seem to be aware of it until I cross-examine my waiters and ask them to specifically check with the chef. I realized this was more of a problem than I knew when a friend with a serious seafood allergy told me she had the same experience with French fries, but with an allergic reaction caused by calamari having been fried in the same oil!

Now we both know that when we are craving French fries or something else fried that we have to ask exactly what else is cooked in the fryer to avoid needing Benadryl, the dreaded epi-pen, or the even more dreaded trip to the emergency room. I know that most of the time I have to forgo those delicious French fries, but I am sure my cholesterol will thank me in the long run.  

Sjogren's and Blepharitis

Often times when I go to the ophthalmologist, I learn that I have a new eye condition or a previous one has returned.  This visit was no different when I went to the eye doctor earlier this week and found out that the blepharitis affecting my right eyelids has not improved and that it is also affecting my left lids. Blepharitis is a relatively new condition for me and I have learning more about during the last few months.  Since blepharitis is a common condition for those with Sjogren’s, I thought that this would be a good opportunity to share some information about it.

Blepharitis is a chronic inflammation of the eyelids; it is more common in those with Sjogren’s or rosacea.  The meiobmian glands, which make lipids, are found along the base of the eyelids and in some Sjogren’s patients become blocked.   

                                      Picture from the Cornea and Contact Lens Society of New Zealand

According to the Sjogren’s Syndrome Foundation, this can cause “low grade chronic inflammation and bacterial infection resulting in pain and swelling of the lower eyelids.”  Many believe that eye lubricants used by those with dry eyes and Sjogren’s patients may contribute to the meibomian glands becoming blocked and to developing blepharitis.  Tear dysfunction itself in Sjogren’s is also thought to be another cause.

The problem with treating blepharitis can be that it tends to comeback.  Most treatments involve warm soaks and gentle cleaning and massage of the eyelids to open the blocked glands. Dr. Robert Fox from Scripps recommends the following steps to clean the lids:

1.       Make a warm compress by dampening a clean washcloth with water and soaking your eyelid for a few minutes.

2.       Make a solution of 1 teaspoon of Johnson and Johnson no tears baby shampoo in a quart of water.

3.       Use a new warm washcloth and put it in this solution and then put the washcloth over your eyelids (with eyes closed).

4.       Next gently massage the washcloth over your eyes

Your doctor may prescribe medications, a specific cleaning routine, or eye cleansers for you.  My doctor has had me use prescription Tobradex a combination anti-biotic and steroid ointment for when the lids become swollen and painful. For Dr. Fox’s complete discussion and recommendations for blepharitis and Sjogren’s click here. Let me know if you any other suggestions or tips that help you keep blepharitis under control.   Mine seems to keep rearing its head every couple weeks.

Something to Try: A Gratitude Journal

When my eyes are cooperating, I am an avid reader of The New York Times Health and Science section always searching for information that might be relevant to autoimmune disease.  I came across an interesting article, A Serving of Gratitude May Save the Day, back in November about the positive effects of people trying a gratitude journal. What may you ask is a gratitude journal and why have I decided to write about it?  It’s actually a very simple idea – a journal where people briefly write five things that they are grateful for weekly.  All that is required is one sentence for each item of gratitude.  Research by psychologist Robert A. Emmons at the University of California Davis, who coined the term gratitude journal and has conducted experiments on their impact, has found that people who kept these journals for two months had a more positive outlook on their life, spent more time working out and reported less physical symptoms.  

What also caught my attention is that when this study was conducted with individuals with neuromuscular diseases, those assigned to keep a gratitude journal daily compared to a group that did not keep a journal (control group), ended up with even higher levels of positive changes in a couple areas.  In addition to feeling better and more optimistic about their lives as a whole, they also felt more connected to others and slept longer and better than people who did not keep the journal.   On the flip side, they did not have the same improvements in other areas of health as people who were healthy who kept the journal such as having less physical symptoms.  This finding isn't a surprise because the participants are ill and being thankful is not going to make their symptoms disappear.

It seems like a gratitude journal might be something worth a try for other people who suffer from chronic illnesses like autoimmune diseases.  I know  for me when I am having a flare, relegated to the couch or bed, and am in significant pain, it is naturally hard to feel upbeat and positive.  We all have things for which to be thankful and maybe a gratitude journal could help provide an extra boost and some positive energy during these tough times.   It is not a very time consuming exercise either – writing five sentences a day or even once a week is definitely a doable task.  I will report back and let you know how it goes and I hope some of you  might join me! It is only taken me since the end of November, but this blog is my impetus to get started.