The following is part of an article taken from UCHealth, an online medical journal from the University of California.
Women are nine times more likely than men to develop Sjögren’s, the disorder affects virtually every racial and ethnic group. Most patients develop symptoms after age 40, including dry eyes, dry mouth and often joint pain and chronic fatigue. And because of their paucity of saliva and the antibacterial chemicals it contains, patients may also develop tooth decay and cavities.
While much is known about the symptoms of Sjögren’s, the disease is complex and poorly understood, and in some cases, it can take more than six years to be diagnosed.
The UCLA School of Dentistry has now received a $2.8 million grant from the National Institute of Dental and Craniofacial Research, part of the National Institutes of Health, to support a multi-center clinical trial of a diagnostic test that uses patients’ saliva to determine whether they have Sjögren’s syndrome. This simple, non-invasive test will permit a diagnosis within minutes, rather than the weeks currently required when using blood or other tissue samples.
The project will be led by Dr. David Wong, associate dean for research and the Felix and Mildred Yip Endowed Professor in Dentistry at the UCLA School of Dentistry. For Dr. Wong and his colleagues, who have been conducting research on using saliva as a diagnostic tool for biomarkers of oral cancer, early-stage pancreatic cancer and other maladies for several years, this is an important step in moving from the research realm to actual clinical trials and, eventually, to use by medical and dental practitioners.
“This clinical trial will make it possible to validate the effectiveness of salivary diagnosis and move us a step closer to eventual FDA approval and clinical product development,” Wong said. “The establishment of scientifically credible biomarkers for this chronic autoimmune disease that are not invasive, painful or embarrassing is our goal.”
Clinical trials will be conducted at three major rheumatology centers, at University Medical Center Groningen in the Netherlands, the University of Minnesota and the Oklahoma Medical Research Foundation. Centers will enroll patients exhibiting sicca symptoms of dry eye and dry mouth and will perform the saliva biomarker assay based on a panel of highly discriminatory salivary biomarkers developed at UCLA. Researchers will benchmark the outcome with the current clinical practice of six clinical tests, including serology and a lip biopsy, to diagnose Sjögren’s syndrome (AECC 2002 criteria).
“The UCLA School of Dentistry is very proud to be at the forefront of this international effort to advance the field of saliva diagnostics from the research laboratory to clinical trials,” said No-Hee Park, dean of the UCLA School of Dentistry. “The prospect of early detection of Sjögren’s syndrome, and possibly other serious illnesses, in the future through this methodology is truly exciting.”
The UCLA School of Dentistry is dedicated to improving the oral health of the people of California, the nation and the world through its teaching, research, patient care and public service initiatives. The school provides education and training programs that develop leaders in dental education, research, the profession and the community; conducts research programs that generate new knowledge, promote oral health and investigate the cause, prevention, diagnosis and treatment of oral disease in an individualized disease-prevention and management model; and delivers patient-centered oral health care to the community and the state.
http://health.universityofcalifornia.edu/2011/10/19/2-8m-grant-to-develop-saliva-test-to-diagnose-sjogrens-syndrome/
About Me
- Tara
- 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.
Thursday, January 19, 2012
Research Highlights on Sjogren's Syndrome
Research Highlights on Sjogren's Syndrome from the National Institues of Health, Department of Health & Human Services
Through basic research on the immune system, autoimmunity, genetics, and connective tissue diseases, researchers continue to learn more about Sjögren’s syndrome. The hope is that a better understanding of the disease and its causes will lead to better treatments and perhaps even prevention.
Some of the areas of research into Sjögren’s syndrome include the following:
•Genetic studies. Recent research has discovered that the STAT4 gene variant associated with rheumatoid arthritis and lupus is also associated with Sjögren’s syndrome. This suggests that variants of this gene play a crucial role in autoimmunity. This discovery may lead to new treatment approaches that will ultimately be effective not only in Sjögren’s syndrome, but possibly in other autoimmune diseases as well.
•Hormonal factors. Because Sjögren’s syndrome affects mostly women, female reproductive hormones may play a role. Although studies have shown that levels of estrogen and progesterone differ little between women with Sjögren’s syndrome and those without, higher levels of prolactin (a hormone that stimulates the production of milk after childbirth and the production of progesterone in the ovary) are found in women with Sjögren’s syndrome. Research is also looking at how the disease affects men and women differently.
•Medication treatment. Studies have shown that cevimeline, is effective at easing dry eyes, as well as dry mouth, and that the immunosuppressive drug cyclophosphamide is effective for treating some of the nervous system effects of Sjögren’s syndrome. In a mouse model of this disorder, eye drops of an anti-CD4 antibody were effective at promoting moisture. On the other hand, at least two other therapies under investigation for Sjögren’s syndrome—the biologic response modifier etanercept and the mild male hormone dehydroepiandrosterone have not proven to be effective.
•Prevalence of extraglandular involvement. Studies have shown that neurological involvement and Sjögren’s-related problems with the skin—including alopecia (a condition characterized by hair loss), vitiligo (a condition in which areas of the skin lose their pigment and become white), and vasculitis (a raised rash)—may be more common than previously thought. Studies also indicate that identifying and treating these problems in people with Sjögren’s syndrome is an important part of managing the disease. Another study shows that clinical depression is also common among Sjögren’s syndrome patients, and may warrant treatment.
•Predicting lung involvement. Knowing who is at highest risk of certain complications can enable doctors to identify and treat these problems earlier and more appropriately. One study showed that serum levels of beta-2 microglobulin (a protein made by plasma cells and associated with inflammation) were higher in people who later developed lung problems with primary Sjögren’s syndrome.
•Role of infection. Doctors believe that infections may trigger Sjögren’s syndrome in people genetically predisposed to the disease. Viral infection is under investigation as a possible trigger for Sjögren’s syndrome and other autoimmune diseases. Epstein-Barr virus, hepatitis C virus and Coxsackie virus are being studied.
•Long-term relief for dry mouth. Gene therapy studies suggest that we may someday be able to insert molecules into salivary glands that will control inflammation and prevent their destruction. Scientists also envision a day when they will be able to transplant salivary glands from one person to another. Development of a safe and effective artificial salivary gland is already underway.
The National Institute of Dental and Craniofacial Research conducts studies to help scientists understand, manage, and treat Sjögren’s syndrome. If you think you might like to take part in a clinical trial, speak with your doctor or check www.clinicaltrials.gov for a listing of trials for which you may be eligible.
Taken from http://www.niams.nih.gov/health_info/sjogrens_syndrome/#resea
Through basic research on the immune system, autoimmunity, genetics, and connective tissue diseases, researchers continue to learn more about Sjögren’s syndrome. The hope is that a better understanding of the disease and its causes will lead to better treatments and perhaps even prevention.
Some of the areas of research into Sjögren’s syndrome include the following:
•Genetic studies. Recent research has discovered that the STAT4 gene variant associated with rheumatoid arthritis and lupus is also associated with Sjögren’s syndrome. This suggests that variants of this gene play a crucial role in autoimmunity. This discovery may lead to new treatment approaches that will ultimately be effective not only in Sjögren’s syndrome, but possibly in other autoimmune diseases as well.
•Hormonal factors. Because Sjögren’s syndrome affects mostly women, female reproductive hormones may play a role. Although studies have shown that levels of estrogen and progesterone differ little between women with Sjögren’s syndrome and those without, higher levels of prolactin (a hormone that stimulates the production of milk after childbirth and the production of progesterone in the ovary) are found in women with Sjögren’s syndrome. Research is also looking at how the disease affects men and women differently.
•Medication treatment. Studies have shown that cevimeline, is effective at easing dry eyes, as well as dry mouth, and that the immunosuppressive drug cyclophosphamide is effective for treating some of the nervous system effects of Sjögren’s syndrome. In a mouse model of this disorder, eye drops of an anti-CD4 antibody were effective at promoting moisture. On the other hand, at least two other therapies under investigation for Sjögren’s syndrome—the biologic response modifier etanercept and the mild male hormone dehydroepiandrosterone have not proven to be effective.
•Prevalence of extraglandular involvement. Studies have shown that neurological involvement and Sjögren’s-related problems with the skin—including alopecia (a condition characterized by hair loss), vitiligo (a condition in which areas of the skin lose their pigment and become white), and vasculitis (a raised rash)—may be more common than previously thought. Studies also indicate that identifying and treating these problems in people with Sjögren’s syndrome is an important part of managing the disease. Another study shows that clinical depression is also common among Sjögren’s syndrome patients, and may warrant treatment.
•Predicting lung involvement. Knowing who is at highest risk of certain complications can enable doctors to identify and treat these problems earlier and more appropriately. One study showed that serum levels of beta-2 microglobulin (a protein made by plasma cells and associated with inflammation) were higher in people who later developed lung problems with primary Sjögren’s syndrome.
•Role of infection. Doctors believe that infections may trigger Sjögren’s syndrome in people genetically predisposed to the disease. Viral infection is under investigation as a possible trigger for Sjögren’s syndrome and other autoimmune diseases. Epstein-Barr virus, hepatitis C virus and Coxsackie virus are being studied.
•Long-term relief for dry mouth. Gene therapy studies suggest that we may someday be able to insert molecules into salivary glands that will control inflammation and prevent their destruction. Scientists also envision a day when they will be able to transplant salivary glands from one person to another. Development of a safe and effective artificial salivary gland is already underway.
The National Institute of Dental and Craniofacial Research conducts studies to help scientists understand, manage, and treat Sjögren’s syndrome. If you think you might like to take part in a clinical trial, speak with your doctor or check www.clinicaltrials.gov for a listing of trials for which you may be eligible.
Taken from http://www.niams.nih.gov/health_info/sjogrens_syndrome/#resea
Monday, January 16, 2012
Allison
A few days ago I lost a great friend, her name is Allison. It was sudden & totally unexpected. She died in her sleep & as of now we don't know why. She was so young & vibrant & loving. She had two boys, a 2-year old and an 8 year old, an adoring husband, a very big family & many friends who loved her.
I have a very strong & deep faith & I have never once doubted my beliefs. And I believe that things happen for a reason, yet I keep finding myself asking "Why?". I know I won't get any answers right now. And I know Allison is in a better place & that I will hug her & laugh with her again there one day. But the heartache is so great. Especially when I watched her 2 boys playing the other night. As a mom, it physically hurts me to think of them growing up without her being there. And as a partner, I can't even begin to imagine how her husband is able to function.
She met my partner before she met me but when we did finally meet, she embraced me in a great big hug & kissed me on the cheek & told me how happy she was to meet me. That's just how she was, she loved big. And if she felt a connection with you, she would tell you she loved you, even if she'd just met you that day. And it wasn't a superficial love. She was a genuine, kind, caring, fun-loving person who gave all of herself to her family & friends. I miss her so much.
I'm having a hard time moving forward. The loss is just to big & so damn tragic. She died suddenly so please, please, remember to love the people in your life & let them know NOW...cuz otherwise it might be too late.
Rest in peace Allison. I love you my dear, dear friend.
Allison & her husband at my birthday party last year. We had so much fun that night :)
Allison & her husband with my partner & I at our Committment Ceremony almost 3 years ago.
I have a very strong & deep faith & I have never once doubted my beliefs. And I believe that things happen for a reason, yet I keep finding myself asking "Why?". I know I won't get any answers right now. And I know Allison is in a better place & that I will hug her & laugh with her again there one day. But the heartache is so great. Especially when I watched her 2 boys playing the other night. As a mom, it physically hurts me to think of them growing up without her being there. And as a partner, I can't even begin to imagine how her husband is able to function.
She met my partner before she met me but when we did finally meet, she embraced me in a great big hug & kissed me on the cheek & told me how happy she was to meet me. That's just how she was, she loved big. And if she felt a connection with you, she would tell you she loved you, even if she'd just met you that day. And it wasn't a superficial love. She was a genuine, kind, caring, fun-loving person who gave all of herself to her family & friends. I miss her so much.
I'm having a hard time moving forward. The loss is just to big & so damn tragic. She died suddenly so please, please, remember to love the people in your life & let them know NOW...cuz otherwise it might be too late.
Rest in peace Allison. I love you my dear, dear friend.
Allison & her husband at my birthday party last year. We had so much fun that night :)
Allison & her husband with my partner & I at our Committment Ceremony almost 3 years ago.
Sunday, January 8, 2012
Thursday, January 5, 2012
Things that make me happy
I love making lists. I have no idea why because I don't really think my list-making obsession has made me more organized. Although I don't just make lists of that kind. I once bought a book of list ideas! Now that may sounds crazy to you, but the idea of a book full of different kinds of lists I could make, made me giddy :) Lately I've had some ideas of lists I wanted to make on here - the thing is it would be wicked fun if others shared their lists or added to mine. Anyhow, here is my list of things that make me happy right now:
1. Nights when I go to bed and I'm actually tired enough to fall asleep in less than 30-minutes.
2. Fig newtons.
3. Warm blankets, fresh out of the dryer.
4. When I hug my 10-month old nephew and he presses his cheek into my cheek; I call it our special hug.
5. My 10-year old son snuggling with me under the blanket on the couch while we each read our own book.
6. That my partner got a new full-time job that pays enough so she can stop working two jobs; now she'll work normal business hours, get paid vacation and not have to pay anything towards her health insurance.
7. My 6-year old, diva dog pug when she is so happy to see you that she gives her classic pug snort greeting & tiny little snot pubbles stick to her nose.
8. When my 4-year old rescued cat, who is only in her second winter indoors, discovered the comfort of curling up in soft blankets this morning; she was purring so loudly I could hear her across the room.
9. That I had the option of getting tofu in my pad thai at lunch today; that I went out to lunch today with my mother who treated my sister & I.
10. The clear blue skies and bright sunshine that have kept me from having a major weather-related flare up today (it's 46 degrees in Central Florida where normally it would be about 20 degrees warmer!).
11. That my 10-year old son doesn't mind me using his laptop a lot.
12. That my partner got an ipad 2 for Christmas from her cousins; she never buys herself anything & even on her birthday will ask for things the family needs.
13. That my sister and I are so close to each other. I love her so very much.
14. That my parents are planning to move back to Lancaster County within the next 3 or 4 years. This was something I was planning to do and when they decided to do the same thing, I was overjoyed.
15. Doreen Virtue's books on angels. I've read almost all of them and I've started re-reading the ones I own ever since I got home from the hospital.
16. That I discovered my holy word - Truth.
17. That I was told the name of my gaurdian angel - Serenity.
18. All the selfless people who do so much to help all the animals in need.
19. Water. Such a simple thing. Something we take for granted. It's purity and purpose intertwined to spur on our bodies so they function. I may lack some, but that only makes me more happy that I can walk over to my sink, lift the handle on the facuet and pour myself a glass of water to drink.
20. Naps.
1. Nights when I go to bed and I'm actually tired enough to fall asleep in less than 30-minutes.
2. Fig newtons.
3. Warm blankets, fresh out of the dryer.
4. When I hug my 10-month old nephew and he presses his cheek into my cheek; I call it our special hug.
5. My 10-year old son snuggling with me under the blanket on the couch while we each read our own book.
6. That my partner got a new full-time job that pays enough so she can stop working two jobs; now she'll work normal business hours, get paid vacation and not have to pay anything towards her health insurance.
7. My 6-year old, diva dog pug when she is so happy to see you that she gives her classic pug snort greeting & tiny little snot pubbles stick to her nose.
8. When my 4-year old rescued cat, who is only in her second winter indoors, discovered the comfort of curling up in soft blankets this morning; she was purring so loudly I could hear her across the room.
9. That I had the option of getting tofu in my pad thai at lunch today; that I went out to lunch today with my mother who treated my sister & I.
10. The clear blue skies and bright sunshine that have kept me from having a major weather-related flare up today (it's 46 degrees in Central Florida where normally it would be about 20 degrees warmer!).
11. That my 10-year old son doesn't mind me using his laptop a lot.
12. That my partner got an ipad 2 for Christmas from her cousins; she never buys herself anything & even on her birthday will ask for things the family needs.
13. That my sister and I are so close to each other. I love her so very much.
14. That my parents are planning to move back to Lancaster County within the next 3 or 4 years. This was something I was planning to do and when they decided to do the same thing, I was overjoyed.
15. Doreen Virtue's books on angels. I've read almost all of them and I've started re-reading the ones I own ever since I got home from the hospital.
16. That I discovered my holy word - Truth.
17. That I was told the name of my gaurdian angel - Serenity.
18. All the selfless people who do so much to help all the animals in need.
19. Water. Such a simple thing. Something we take for granted. It's purity and purpose intertwined to spur on our bodies so they function. I may lack some, but that only makes me more happy that I can walk over to my sink, lift the handle on the facuet and pour myself a glass of water to drink.
20. Naps.
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.
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.
Tuesday, January 3, 2012
Thoughts on the new year
2012 is going to be a great year for me. How do I know? I'm going to make it happen. Forget resolutions, goals or promises that I'll try. It. Will. Happen. The last 5 weeks of 2011 were pivitol in my shift of conciousness. I have an unshaking sense of success.
Ironically it will also be a year of challenges for me as I navigate all the doctor's appointments and payments that having Sjogren's has brought into my life. There's the rheumatolgist, the ENT to do my lip biopsy, the eye doctor, the dentist, the nephrologist and of course my family doctor. In order to not overwhelm myself I'm taking it one at a time! Now that I've been approved for Medicaid I will be scheduling an appointment with the rheumatologist and go from there. My guess is that she (yup, I'm going to a place where all the rheumy's are women!) will be able to recommend which ENT I should go to for the biopsy. Or she will decide to do a different test & not that one at all (fine with me as long as we get results). After my appointment with her I'll go see my family doctor to update them. I have my monthly appointment with the nephrologist next Wednesday - and man is he gonna have a lot to deal with cuz I am now armed with even more knowledge & questions than last month. So that will be 4 down. Then it'll be the dentist - which I'm dreading as I already have tooth decay from the dry mouth & I can only imagine how many visits that will be. And then on to the eye doctor - where I will be getting new glasses as well. I know there will be follow-up appointments and more tests along the way.
But you know what? I can handle it. I can handle it head on with grace. In the past I would have blown half of these off. Partly out of fear, partly out of thinking it wasn't really necessary for me to go to all of them, and partly because I would've been too damn tired to keep up with it all. So what's changed? My outlook. Just knowing why I feel the way I do, and that there are things I can do to help make me feel better, has made all the difference to me.
Oh I forgot a very important appointment! It's with the dietician at my nephrologist's office. She's going to help me create a healthy, balanced diet tailored to my specific health issues. It won't be easy as I have a refined (aka nice way of saying picky) taste in food. But I know it is essential that I do this. And I know that I will need help with it. I've already cut out milk - which was HUGE for me! I grew up in a dairy farm town where they delivered milk to your door from the dairy where the cows where roaming free & treated humanely. But, I did it. Yes I endulged twice - both around Christmas while eating homemade Christmas cookies, which is totally justified. I've cut back on dairy in other ways and that's been tough but I've done it. The hardest is the cheese cuz I love me some cheese!!!! The second hardest has been real butter. I've cut back on red meat, eating mostly chicken or turkey meat. I haven't increased my fish intake but I will. I'm also considering switching to a gluten-free diet. I have a sneaking suspician that all these changes will suck but will make a major difference in how I feel physically.
This year I am choosing to be happy. I'm currently reading Esther & Jerry Hicks's book Ask and it is Given and one of the things that has really struck a chord deep within me is that the emotions I am feeling have a tremendous impact on the reality that I am creating. I'd love to expand on this but I'll save that for another post. However I do want to say in closing that I have created another blog. This one is a mostly a visual blog as it is my online version of a vision board. I'll be adding to and changing it often so if you're interested check it out. Manifesting my reality is going to be a huge focus for me this year. I am choosing to wake up and re-align with my spiritual path.
Look out 2012! This is my year ")
Ironically it will also be a year of challenges for me as I navigate all the doctor's appointments and payments that having Sjogren's has brought into my life. There's the rheumatolgist, the ENT to do my lip biopsy, the eye doctor, the dentist, the nephrologist and of course my family doctor. In order to not overwhelm myself I'm taking it one at a time! Now that I've been approved for Medicaid I will be scheduling an appointment with the rheumatologist and go from there. My guess is that she (yup, I'm going to a place where all the rheumy's are women!) will be able to recommend which ENT I should go to for the biopsy. Or she will decide to do a different test & not that one at all (fine with me as long as we get results). After my appointment with her I'll go see my family doctor to update them. I have my monthly appointment with the nephrologist next Wednesday - and man is he gonna have a lot to deal with cuz I am now armed with even more knowledge & questions than last month. So that will be 4 down. Then it'll be the dentist - which I'm dreading as I already have tooth decay from the dry mouth & I can only imagine how many visits that will be. And then on to the eye doctor - where I will be getting new glasses as well. I know there will be follow-up appointments and more tests along the way.
But you know what? I can handle it. I can handle it head on with grace. In the past I would have blown half of these off. Partly out of fear, partly out of thinking it wasn't really necessary for me to go to all of them, and partly because I would've been too damn tired to keep up with it all. So what's changed? My outlook. Just knowing why I feel the way I do, and that there are things I can do to help make me feel better, has made all the difference to me.
Oh I forgot a very important appointment! It's with the dietician at my nephrologist's office. She's going to help me create a healthy, balanced diet tailored to my specific health issues. It won't be easy as I have a refined (aka nice way of saying picky) taste in food. But I know it is essential that I do this. And I know that I will need help with it. I've already cut out milk - which was HUGE for me! I grew up in a dairy farm town where they delivered milk to your door from the dairy where the cows where roaming free & treated humanely. But, I did it. Yes I endulged twice - both around Christmas while eating homemade Christmas cookies, which is totally justified. I've cut back on dairy in other ways and that's been tough but I've done it. The hardest is the cheese cuz I love me some cheese!!!! The second hardest has been real butter. I've cut back on red meat, eating mostly chicken or turkey meat. I haven't increased my fish intake but I will. I'm also considering switching to a gluten-free diet. I have a sneaking suspician that all these changes will suck but will make a major difference in how I feel physically.
This year I am choosing to be happy. I'm currently reading Esther & Jerry Hicks's book Ask and it is Given and one of the things that has really struck a chord deep within me is that the emotions I am feeling have a tremendous impact on the reality that I am creating. I'd love to expand on this but I'll save that for another post. However I do want to say in closing that I have created another blog. This one is a mostly a visual blog as it is my online version of a vision board. I'll be adding to and changing it often so if you're interested check it out. Manifesting my reality is going to be a huge focus for me this year. I am choosing to wake up and re-align with my spiritual path.
Look out 2012! This is my year ")
Monday, January 2, 2012
29 Gifts
Want a fabulous way to start 2012 off on the right foot? Check out Cami Walker's webpage 29Gifts.org
I found out about this through an article in a local free publication and was fascinated. It sounded like a wicked cool idea. Best of all, Cami, though she may not know it, is a spoonie and a ChronicBabe. Yup, she's got a chronic illness just like us. Cami is 38 lives in Denver and has multiple sclerosis. Apparently after a rough, sleepless night due to a flare-up, a friend of hers suggested that she "give something away each day for 29 days" in order to stop feeling sorry for herself. On day 14 she was already feeling better - and not just emotionally. She says that her body was stronger - so much stronger that she was able to get a part-time job.
Researchers have found that people who engage in acts benefitting others their bodies tend to release more of the calming hormones like progesterone and oxytocin. I'll be adding this to my alternative healing repertoire. In fact, I start tomorrow.
The coolest thing about all of this is that you can join a community of like-minded people all on their giving journeys through the interactive tools Cami offers on her website. I have my own page, my own blog, an Inbox, a list of my friends; and there's inspiration, ideas and tons of fabulous people to meet.
I hope you will join me and take your own giving challenge and if you do be sure to let me know so I can follow your progress as well. If you're not sure if this is for you at least check out the webpage and my blog of course!
I start tomorrow but I've already posted my first entry on my blog. Visit me at givingchallenge.ning.com/profile/Tara32931
I found out about this through an article in a local free publication and was fascinated. It sounded like a wicked cool idea. Best of all, Cami, though she may not know it, is a spoonie and a ChronicBabe. Yup, she's got a chronic illness just like us. Cami is 38 lives in Denver and has multiple sclerosis. Apparently after a rough, sleepless night due to a flare-up, a friend of hers suggested that she "give something away each day for 29 days" in order to stop feeling sorry for herself. On day 14 she was already feeling better - and not just emotionally. She says that her body was stronger - so much stronger that she was able to get a part-time job.
Researchers have found that people who engage in acts benefitting others their bodies tend to release more of the calming hormones like progesterone and oxytocin. I'll be adding this to my alternative healing repertoire. In fact, I start tomorrow.
The coolest thing about all of this is that you can join a community of like-minded people all on their giving journeys through the interactive tools Cami offers on her website. I have my own page, my own blog, an Inbox, a list of my friends; and there's inspiration, ideas and tons of fabulous people to meet.
I hope you will join me and take your own giving challenge and if you do be sure to let me know so I can follow your progress as well. If you're not sure if this is for you at least check out the webpage and my blog of course!
I start tomorrow but I've already posted my first entry on my blog. Visit me at givingchallenge.ning.com/profile/Tara32931
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