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I was recently diagnosed with Distal RTA & Sjogren's Syndrome, which has been a spiritual wake up call for me. I decided to create a blog to empower myself, educate my family & friends and create support for others. I live in Central Florida with my partner, my 10-year old son, an epileptic pug and a rescued cat. I am mecurial, sensitve, passionate and intense.

Wednesday, January 4, 2012

My Sjogren's Syndrome Experience by guest blogger Juneanne Longmire Gergen

I found a wonderful personal account of Sjogren's Syndrome that I wanted very much to share here. Juneanne was gracious enough to allow me to do just that. The following is her story, in her words, just as it appeared on the Sjogren's Syndrome Foundation Facebook page.

I have been diagnosed with Sjogren’s Syndrome. This is an autoimmune disease. It is not a virus, it is not an infection, it is not cancer … symptoms may be treated, but it can, under NO circumstance, be cured. There is no known specific origin, or trigger, that causes the illness. It will not go away, it will not get better; it will be with me every minute of every day for the rest of my life, unless someone discovers its cause and creates a cure.

To be brief: Sjogrens puts my immune system on overdrive. I have to take drugs to destroy my immune system so Sjogrens doesn't destroy me. Sjogrens attacks to kill all moisture producing glands, and this can include organs. Sjogren's patients have a 44% increased chance of lymphoma.

As many as 4 million people in the United States have this illness, and 90% of those are women. It is the third most common autoimmune disease, ranked above lupus and multiple sclerosis. How it affects everyone is as individual as each person – some have quite mild issues, and others have very life-altering debilitating ones. I’m on the higher end, but count my blessings that I do not have major organ involvement to the extreme, at least not yet. I do have to interject, though, that in 2003 I had a series of horrific events that led to four surgeries in 12 weeks, and losing so much blood I nearly lost my life and had to endure a major transfusion. I lost my uterus and cervix, both ovaries, my appendix, and my gal bladder. OH, and my business. SO, I cannot say, definitively, that I do not have organ involvement. Why would an otherwise seemingly healthy individual all of a sudden go through this all at once, and then be diagnosed less than two years later with Sjogren's Syndrome? Obviously, there is a relation.

The MARKERS for Sjogren's Syndrome, that is to say the symptoms that should cause a doctor to look further in its direction, are dry mouth and dry eyes. However, these were not MY markers as I did not think my mouth and/or eyes were any dryer than the next person’s. I do now, though, have a VERY difficult time with those particular issues.

This is not an illness that makes you LOOK sick, for the most part. However, when I am having particularly difficult days, you can tell by looking at me that I am not well. I have many people ask me what it is like. I generally feel very lousy, every single day. My GOOD days feel like your worst day on the all-out flu. I feel a massive level of exhaustion and general nausea ALL the time. This is not your “I didn’t sleep well last night” feeling. It is beyond that. For me it is how one feels when they’ve been awake for several days without any sleep. Sickly exhausted. NO, sleeping does not make it better. I never awake feeling rested. It is, I suppose, a combination of fatigue, lethary and malaise.

There are SO many symptoms that one can feel with Sjogren’s Syndrome. I have made a list of the symptoms that I am bothered with on a regular basis below. When you read it you will think it cannot be possible. Believe me, it is, and I feel it every day.

I was first diagnosed with Sjogren’s in the Spring of 2005. Two years prior I had started feeling the exhausted part, had all those surgeries, then along came massive anxiety. I had been seeing my doctor all this time; he’d been ordering all kinds of lab work. Each time I had elevated ANA levels, but he didn’t seem TOO alarmed. Perplexed and concerned, but not alarmed. Let me explain that I have a very high pain tolerance, and I have not been one to complain, ever, about not feeling well (at least as an adult). I’ve always been a workaholic, and have just mulled along, no matter how I was feeling. This was beginning to change ... which caused ME great concern.

I came to a point where I felt I was absolutely going to lose my mind with how I was feeling. I told my doctor to either find me a diagnosis or admit me to the mental ward of the hospital. Dr. B knew me well, and this was cause for alarm to him. One more order of complete blood work, again showing elevated ANA levels, and he immediately referred me to a fabulous rheumatologist. Within two weeks I knew my diagnoses. I had more blood work, a complete, and very specific, physical exam, and a very painful lip biopsy. My rheumatologist said in all his years of practice he’d never seen a lip biopsy result come back at the top of the chart, but mine certainly did. My husband assured him I am an over-achiever (he used a different phrase!). There was absolutely no question that I was facing both Fibromyalgia and Sjogren’s Syndrome.

These definitive diagnoses gave me a sense of peace. Even though I knew I may not ever feel better, I knew there was a REASON for how I was feeling, and I was not losing my mind!

An autoimmune disease means your body is mistakenly attacking itself. Your immune system is on overdrive. Mine, with Sjogren’s, is attacking all of my moisture producing glands, leaving my body struggling to function with a serious lack thereof. Knowing our bodies are 61.8 percent water, this leaves a lot of room for error in function without it. I do take the maximum dose of an immunosuppressant, and often steroids, to attempt slowing this process, in addition to maintenance pain medications (not the addicting type, I refuse). It took a lot of trial and error, and some dangerous moments, to find an immunosuppressant that would not damage my organs (my illness is already doing a bang-up job at that!) and be beneficial for its intended purpose. I have gained a tremendous amount of weight, all medication induced. This exacerbates other issues, especially emotionally.

Now taking these medications leaves me at high risk for infection, but the alternative could be worse. It is not good for me to be out and about around the general public where infection is everywhere. I cannot be around or care for my family who is sick, and/or sick grandbabies. When I do get ill, it is dangerous, I can develop all kinds of complications, and it takes a great deal longer for me to heal than the average person. This is true, too, for injuries, cuts, bruises, etc. They happen easily, and take much longer to heal.

One thing that many people say OFTEN that nearly drives me into insanity is, “You need to just rest so you can get better!” I understand they/you are trying to help me, but if they/you truly understand my illness, they/you will realize there is no getting better. It is impossible. Or, “I’m sorry you feel so awful, I hope you’ll get better soon.” AGAIN: not going to happen. See above. Every day is awful, some days are worse, but there is no “better.”

What can one say, then? How about simply, “I’m sorry you feel like crap; can I do anything for you?” OR, leave that last part off and just DO something without asking me. Clean my kitchen floor, pull some weeds. I will NEVER ask for help. I’m a giver, not a taker.

Know, also, I am stubborn. I still will try to do things when maybe I shouldn’t. I am REALLY improving on this, though, learning my limits. It is very hard for someone whose life used to run at Mach 10, 24/7.

The long-term outlook for patients with Sjogren’s is not good. We are at increased risk of lymphomas, cancers of B cells. We are at risk for kidney disease, a scarring of the kidneys that can destroy their function, requiring patients to go on dialysis. Other major organ involvement and failure is also a real possibility. And, with the simplest of our issues, our dry eyes and dry mouths tend to get worse. Dry mouths lead to dental cavities and deterioration of the tissues of the mouth so that eating becomes a misery. Dry eyes after a while cannot be helped by eye drops: vision loss is a real possibility. My eyes are on fire ALL the time.

I’ll leave it at this for now. Below are the symptoms I deal with on a daily and/or very regular basis. There are others that I have not listed, that I am not bothered by, and hopefully will never be.

All instances of Sjogrens syndrome are systemic, affecting the entire body, including major organs. Symptoms may remain steady, worsen, but very rarely go into remission.

Following are MY symptoms:

■extreme exhaustion, fatigue (way beyond feeling tired)
■insomnia (you'd think w/ the exhaustion I could sleep well, right? Wrong.)
■upper airway resistance, which causes severe sleep issues
■general “flu-like” feeling
■general muscle and joint pain, weakness, twitching and stiffness
■burning and painful feet and hands
■greater susceptibility to, and more frequent infections
■sinus infections, bronchitis, pneumonia, pleurisy
■infections in skin
■intolerance to cold, and sensitivity to heat
■cold/hot flashes
■sometimes extreme perspiration
■night sweats
■low-grade fever
■often low body temperature
■swollen nymph nodes/glands
■swelling of the sinuses, nasal congestion, stuffiness
■swollen parotid and submandibular glands, and lymph nodes
■ringing and itching in the ears
■hearing loss
■numbness, tingling and change in sensation
■facial numbness (numb eyeballs are quite a trip!!)
■nerve pain
■low blood pressure
■tremors/shaking
■redness/itching, rashes and skin conditions, extreme dryness and itching
■red/purple spots on skin (commonly legs)
■easy bruising
■excessive bleeding
■dry vagina
■dry eyes, redness/irritation, gritty feeling
■blurred vision that eyeglasses cannot correct
■sensitivity to light
■eye pain, sometimes very sharp
■crustiness, bumps, or redness around the eyelids: Blepharitis
■dry mouth
■difficulty speaking, formulating words (from lack of saliva, swollen tongue)
■issues with tooth decay, cavities, erosion, chipping, cracking
■dry, sticky surfaces inside mouth
■continual need for liquids, especially water
■mouth sores
■red, dry furrowed tongue
■bad breath
■cracking at corners of mouth
■loss of taste and/or frequent metallic taste
■hoarseness, persistent sore throat
■dry cough
■hair loss
■shortness of breath
■chest pains
■heartburn, reflux
■heart palpitations
■abdominal pain, cramping and tenderness
■irritable bowel syndrome: IBS
■digestive problems and frequent nausea: Epigastric pain
■irritable bladder, frequent and sometimes painful urination: Dysuria & Nocturia
■dizziness and vertigo
■depression and anxiety
■concentration and memory problems: brain fog
■swollen legs, ankles, hands, forearms, eyes, face
■extreme pain on bottoms of feet when walking, fat pads diminishing
■esophageal spasms (causes choking while eating, esp. dry foods): spastic esophageal motility disorder
■nerve damage: Peripheral Neuropathy
■poor circulation to extremities: Raynaud’s Syndrome
■brittle nails and/or nails with ridges
■frequent migraines
■hyper sensitivity to sound
■Renal colic (this has slowed down for me, however. Maybe because I drink an ABUNDANCE of water?)

I also have Fibromyalgia, which causes

■extreme pain to the touch
■http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm?r=facebook

NOW, with all that said, I do not want 50 million comments of sympathy here. PLEASE, don't.

I want you to take this new knowledge and spread awareness for this very common, yet very little known, autoimmune disease. More people suffer from Sjogren’s than those who have breast cancer, but what do you know more about??? I’d love to see some resources dropped into the Sjogren’s Syndrome Foundation to aid in research and development so future generations will not have to suffer as I am. Take what you know now and talk about it. To everyone.

1 comment:

  1. Thank you for posting this! I have Sjogren's too and it helps to hear about other people's experiences. Family and friends just don't understand the day to day challenges with this illness.

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