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.