Chasing Sunshine in a Time of Darkness: Sun sensitivity and lupus

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If you've never heard of a "sun allergy" or photosensitivity, I can tell you a little about it. For the last year (and probably more), it has been reminding me how bizarre and all-consuming autoimmune disease can be. I've had to add it my list of silent disease symptoms... and now also to my first experience with an illness that others can actually see. 

I am not just sensitive to the sun, but to everything that emits or reflects UV rays. Fluorescent lights in stores or offices can cause a trigger even if they are windowless. Riding in a car, going on a walk even on an overcast Ohio Winter day, taking my kids to the park, going shopping, sitting near a window.

It's not really an allergic response to the sun but an issue of cell clearance... or rather, the body's inability to remove dead cells that are naturally caused by UV rays. The cells remain too long and the body begins to attack what it thinks are invaders. Healthy organs and body systems become the object of destruction. So it isn't really the sun that the body is targeting... but itself. 

I used to think that it would be better if my sickness was visible so that people would better understand what was happening to me on the inside. Now that I have the limited experience of an occasionally disfiguring disease, I see that it doesn't really help me or others cope. Not really. I don't find it less lonely or confusing... it's just different. 

WHY IS THIS HAPPENING NOW?

One truth about autoimmune diseases is that they tend to collect and multiply. For example, someone who starts off will celiac disease or hashimotos thyroiditis will, on average, collect another autoimmune disease every ten years. Once the immune system is going wonky and attacking itself, it is only a matter of time before many body systems are involved. The problem is the entire immune system and it only manifests in one area of the body at a time and damages others over time. 

That is my story. And even while I have walked back many of the most severe symptoms, I am still fighting to find ways to continually cool my overactive system and heal the source of the trouble. 

WHAT IS "NORMAL"?

I have had severe body pain ever since I can remember which is back to preschool. In middle school, my stomach and digestive tract became involved. By the time I was a young adult, I had developed symptoms of what would later become diagnosed as Eosinophilic Esophagitis (an autoimmune disease). The only treatment I was offered for that was steroids and so my symptoms continued to compound.

As a child, I didn't know that kind of pain wasn't normal. 

Fatigue.
Nausea.
Digestive issues.
Headaches.
Severe joint pain.
Muscle pain and fatigue.
Skin problems.
Sleep difficulties.
A hundred little things that add up to make you feel crazy. 
A dozen big things that make you feel afraid.

By the time I was in my mid 30's, I was battling chronic pain and illness but being told by doctors that I was in good health. I felt hopeless and depressed and there were many days when even walking across the house felt overwhelming from the pain and exhaustion. 

But it was a silent battle. And I don't think that anyone should be left alone in that silence like I was, which is why I speak it constantly in my personal life and using whatever internet platform I have. 

It's often humbling and a little awkward since I don't know the perfect way to share... but it is important enough to try. 

THE FACE OF LUPUS

It's hard to believe that the woman on the left was me just 2 years ago. So much has changed. I don't usually look like the gal on the right but... I really have not fully recovered. I've aged a lot in a short period of time. Essential oils and plain coconut, almond, or jojoba oils have been a tremendous blessing when my skin won't tolerate anything else. 

My camera washed out much of the red, raw skin in the picture on the right. But I think you get the idea. Before I figured out the connection with UV, the red patches were raw and eventually scabbed over. This is what's going on inside my body finally showing up on the outside, courtesy of a beautiful Spring morning in 2017...

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When I started showing serious signs of lupus, I finally found a doctor who sat with me for an hour and listened to my full history. She took the appropriate tests and we talked.

She said...

"It seems likely that the celiac disease came first and triggered everything else. You've done a marvelous job taking care of yourself for the last few years... now let us help you. What do you want to do about the lupus? You know if you go into _______ that they will put you on prednisone right away and then start with the immune suppressants."

Yep. I know. That's why I'm here and not there. 

Celiac
Allergies
Fibromyalgia
Eosinophilic Espohagitis
Lupus

It doesn't need to be named in order to be real. But to be able to name it is to have a certain measure of control and hope. For those of you still searching, I pray that you get to name the enemy. In the meantime, I can still offer you hope.

THE PATH TO HEALING

Through dietary and lifestyle changes I have made over the past 6 years, I have brought my gluten antibody response to zero, completely reversed my esophageal symptoms (I previously could not eat anything but mushy cereal nor swallow even small pills), my joint pain/ swelling and muscle pain and weakness are occasional instead of constant and debilitating, and I am not afraid of going to gatherings where I might stumble embarrassingly over my words or be too drained afterwards to function for a week.

The healing has been life changing. But it's not over.

I have severe chemical sensitivities to pretty much everything (although pure essential oils have given me a hope in a toxic world) and planning a day trip has now become a challenge.  

How does a person adjust to a change like that? I admit I'm not handling it well. I've always had specific ideas in my mind of what painful loss looks like but never in my wildest dreams did it look like being deprived of the sunshine. 

My last troublesome flare was triggered by sitting under UV emitting fluorescent lights for two days at an aromatherapy conference. I never even went outside. 

SPRING IS COMING

As Winter slowly inches toward Spring, I'm experiencing something that I've never felt before toward the end of a Northeast Winter: dread. I simply don't know how I will traverse another beautiful sunshine season with my 8 kids, 1 husband, full life, and an inability to breathe in the amazing season outside.

I actually do know the answer: One step at a time. But I don't yet know what that looks like. Will it look like weeks of endless illness? I just don't know. 

But Spring also brings hope in the form of a new naturopathic doctor and my belief that yes, this is a mountain that I can climb. I believe that there is a reasonable chance for me to find healing. 

Most people will think I’m crazy... because people don’t reverse lupus. But to be honest with me you, I know very few people who have really tried. 

OPTIONS

The obvious medical options are prednisone and immunosuppressants. The problem with the pharmaceutical option is that it doesn't actually address the underlying cause and adds an additional burden (and potential risks) to my already struggling body. I will take them if my organs and life are at risk. But at this point, there is just as much likelihood that those medications will pose a significant threat to my organs and life expectancy. Lupus and autoimmune internet boards are full of people who are as busy battling the damage from their medications as they are their primary symptoms.

The alternative option is to continue what I have been successfully doing, and that is healing through natural means under the counsel of functional medicine physicians. This approach has already taken me from a kind of death to new life and I am committed to continuing that path.

In the meantime, Spring is coming and I'm bouncing between grumpiness and delight while internet shopping for...

  • Personal UV monitors (Worth the investment?)
  • UPF clothing (Can someone please develop a stylish line that doesn't look like beachwear?) 
  • Long sleeved swimwear and swim leggings (and I'm really confused by the purpose of UPF 50 bikinis)
  • Non-toxic sunscreen (I'm trying to reconcile the price of the best mineral sunscreens for full body use or find a DIY that doesn't go on like paste. Still in trial stages!)
  • Nutritious food (I'm good here... thank you local farms and Thrive Market... but I totally need a personal chef)
  • Supportive supplements (Yes! Essential to my healthcare. I use doTERRA for my staples)
  • Healing therapies (So much overwhelm and $$$... )
  • Essential oils (Sweet affordable consolation)

I can’t buy it all but I can window shop... and try to fill the gaping hole where “control” should be. Scratch that. The gaping hole where God should be.

Okay... Deep breath.... Thank you, Lord, for lupus. It keeps bringing me back to the foot of Your glorious cross... where I’m going to keep chasing sunshine. 

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