Sjögren’s: Hold Me, Thrill Me, Kiss Me, Kill Me

September was "Pain Awareness Month"

It has come and gone, but for myself and millions of others, every month is pain awareness month. That may come across as a slightly facetious comment, and that's okay because it's true. Some of us live with chronic pain 24/7, which is just part of our life. Chronic pain robs people of such beautiful things as spontaneity, joy, happiness, lightheartedness, and so much more. I suffer from many health issues, some quite severe, and Sjögren's Syndrome is undoubtedly one of them.

Like a Batman villain

It's not a very well-known disease; however, those who know it, like some doctors I've come across, usually remark with raised eyebrows and a remark like, "Oh, that sucks, I'm sorry." I have had serious degenerative autoimmune diseases, Psoriatic Arthritis, and Ankylosing Spondylitis for 30 years, and it has wreaked total havoc with my joints. I have had several joint replacements and fusion surgeries. I have developed several comorbidities related to these diseases. I consider Sjôgrens to be a sneaky evil villain that has chosen to inhabit my body with its mysterious ways of manifesting itself in so many different ways. I am riddled with symptoms.

Functional Disability

In the article, Pain Awareness Month: Patients with Sjögren's syndrome rate their pain at 5 out of 10, I discovered a term that I have chosen to adopt from this day forward: *functional disability. It means an irreversible and serious limitation of a person's physical or mental capacity or of their skills that prevents the person from living independently. This truly captures my situation. I am disabled yet functional enough that I remain "invisible" in the eyes of the public. I should mention that I'm not trying to make my health problems visible (just known), although as I continue to deteriorate, it's hard not to start to show signs of disability.

*Source: www.lawinsider.com

This article,"'Oft-neglected' Sjögren's syndrome now second most common autoimmune disease," discusses just how common this disease has become and how life-impacting it can be. I can tell you that I would, as devastating as joint damage can be, given the opportunity to be rid of one disease, it would be Sjögren's. Although, in my case, they are intertwined. I have Secondary Sjogren's Syndrome, associated with underlying autoimmune disorders like Psoriatic Arthritis; in other words, they come as a package. Beyond the arthritis component that is also a part of Sjögren's, it affects such sensitive areas as the eyes, mouth, and skin, which is far more debilitating than it sounds. My eyes feel like someone kicked sand in them; they itch and feel dry but also over tear and generate a sticky secretion that gets them all "gummed" up during the night (something called Blepharitis). (The over-tearing is bad enough to actually splash onto my reading glasses when I blink! It leaves watermarks on the lenses.) They require regular doses of prescribed eyedrops and eye gels, which cause temporary blurry vision. There is no official treatment for Sjogren's, making it much harder to manage. Other autoimmune diseases can often be well controlled with the use of biologic drugs. For instance, I'm on Remicade for my arthritis which helps a lot.

What is of serious concern, however, is the long list of dysfunctions that can accompany Sjögren's.

Other symptoms at presentation may include seropositive polyarthritis, polymyalgia rheumatica, leukocytoclastic vasculitis, demyelinating disease, peripheral neuropathy, inflammatory myositis, salivary gland swelling, or accelerated caries.

While many patients experience dry eyes, dry mouth, fatigue, and joint pain, Sjögren's can also cause dysfunction of organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and central nervous system. Patients also have a higher chance of developing lymphoma.

Symptoms vary from person to person but may include: (I have experienced all those in bold)

• Neurological problems, concentration/memory loss, "brain fog," dysautonomia, headaches
  
• Dry eyes, corneal ulcerations, and infections
  
• Dry nose, recurrent sinusitis, nosebleeds
  
• Dry mouth, mouth sores, dental decay, difficulty with chewing, speech, taste, and dentures
  
• Swollen, painful parotid/salivary glands
  
• Difficulty swallowing, heartburn, reflux, esophagitis
  
• Fatigue, vasculitis, lymphoma, dry skin, skin sensitivity to UV light
  
• Recurrent bronchitis, interstitial lung disease, pneumonia
  
• Arthritis, joint/muscle pain
  
• Abnormal liver function tests, chronic active autoimmune hepatitis, primary biliary cholangitis
  
• Peripheral neuropathy, Raynaud's
  
• Stomach upset, gastroparesis, autoimmune pancreatitis
  
• Irritable bowel, autoimmune gastrointestinal dysmotility
  
• Interstitial cystitis, interstitial nephritis including renal tubular acidosis, glomerulonephritis
  
• Vaginal dryness, vulvodynia; chronic prostatitis

So, as you can see, this is more than just dry eyes and dry mouth. It affects the body globally and causes havoc wherever it lands. I've been trying desperately for years to get my IBS and gastrointestinal dysmotility under control with no luck. I did not realize until I recently read this long list of dysfunctions that Sjögren's could be causing it. From experience, there is very little one can do, which is obviously disheartening. When you've spent thousands and thousands of dollars and even traveled to a special clinic in the U.S. trying all sorts of supplements and therapies and yet are still suffering, it really takes a toll on your morale.

A Celebrity with Sjögren's Syndrome, and more

*Dancing With The Stars judge Carrie Ann Inaba has been on the show for almost two decades, but behind her smiling exterior, the 54-year-old has been dealing with several difficult illnesses. Carrie Ann has been diagnosed with fibromyalgia, lupus, and arthritis, along with Sjögren's Syndrome, all of which means that even a small illness, such as flu or a sickness bug, can set her back a long way. The TV star recently had to leave the show because her illnesses were just too much to cope with. She is doing whatever she can to try to mitigate the effects on her life, but it's not easy. Think about that for a moment. Her job, which basically is sitting in a chair to evaluate and judge contestants became too much for her - imagine that. Despite her outwardly healthy appearance, she is actually very sick. These invisible illnesses can be unforgiving. Sjögren's and its baggage can be so bad that some people have actually sought out doctor-assisted suicide because they just could not live with the chronic pain anymore.

*Source: www.hellomagazine.com

My Life is a Riddle

Boy, this chapter is a real bummer, eh?! Let's see if I can close this one without it drying up in the desert like the skeleton of some carcass that perished in the heat. As I recover from the hip revision surgery I had done on January 17th, I realize that I have become seriously overwhelmed with the overlapping symptoms I live with every day that may have single or multiple underlying causes, such as Cobalt poisoning combined with Sjogren's. Which one is the culprit? Which one is the Batman villain? If I had to choose one villain that represents how I feel, without a doubt, it would be The Riddler! My life has become one complicated riddle of diseases. One that no doctor can solve or fix. I've gotten to a point where I feel numb to it all. I have, in a sense, given up trying to "fix" myself. Instead, I'd prefer to have someone Hold Me, Thrill Me, Kiss Me, and Kill Me as I stand alone, numb to all the pain and suffering I live with daily. Take it away U2; the stage is yours now!