About Me

My photo
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.

16 comments:

  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.

    ReplyDelete
    Replies
    1. Thanks to dr.ezomo for his good work I never believe that ALS has cure, I was ALS over 3 year now before I came across a comment about how
      dr.ezomo cure ALS and herpes disease but when I saw it i have it in mind
      that he cant cure ALS I just decided to give it a try I contact him that
      night luckily to me he replied me, but I dont believe him I thought it was
      a scam but I still hold on to see the work of Dr ezomo if he is saying the
      truth he ask for some details about me i gave him all he needed and I
      waited to see his reply to my problem after all, he told me to go for check
      up and I went for HIV test I cant believe I was negative,am so happy and
      grateful to God for using Dr ezomo to cure me, that is the reason why i
      decided to write this wonderful testimony of our i was cured, i recommend
      Dr ezomo to you all around the world,contact him on his Email dr.ezomorootandherbals@gmail.com or you can also reach him through WhatsApp number+2349069171173
      dr.ezomo for helping me at this young age if you need help contact,
      He can also cure so many sickness

      Delete
  2. The Sjogren’s Syndrome Treatment is twofold in the case of primary disease that is to treat the symptoms and put an end to the autoimmune reaction. Treatment of underlying cause is also necessary in secondary form of disease.Neteton herbal product by Herbs Solutions By Nature treat the condition at all levels and so is highly recommended.

    ReplyDelete
  3. If you’re reading this you are here for a reason and the reason we assume is Burning Mouth Syndrome. You’re either reading it because you are a victim of the disease yourself or someone close to you is or maybe you want to inquire about the disease. Great effort in either case!
    If you’re here for the former then you have finally landed to the right place. If you or someone you know is suffering from this terrific mouth disorder then it is of course a serious cause of concern. While suffering from Burning Mouth Syndrome a patient has no life as such because one cannot eat the foods of their choice such as many of us like spicy foods, soda drinks and a lot of other foods that you cannot have while you’re in the possession of this disease.

    http://www.herbs-solutions-by-nature.com/Burning-Mouth-Syndrome.php

    ReplyDelete
  4. The objectives of Sjogren’s Syndrome treatment are to reduction uneasiness and decrease the unsafe impacts of dryness.

    ReplyDelete
  5. The online Natural Herbs Clinic offers Sjogren's syndrome herbal treatment for all chronic and obstinate health issues. Expert of health uses superb herbal extracts in tablet form, which are easy to take, effective and safe for long-term use.

    ReplyDelete
  6. Whether you are in a rush to get things done or find yourself exhausted and tired, the chances of not thinking before you act could lend its way to bruising. It happens when you least expect it. You turn too sharply when going around the counter and bump your hip. Or your grandson leaves his roller skates out and you trip and hit your shins. Regardless on how it happens you can end up with a nice bruise to show for your troubles. http://www.mordocrosswords.com/2016/07/theyre-easily-bruised.html

    ReplyDelete
  7. Sjogren's Syndrome Natural Treatment may improve various symptoms. Dryness in the eyes and mouth are symptoms of Sjogren’s Syndrome.


    http://www.herbs-solutions-by-nature.com/Sjogrens-Syndrome.php

    ReplyDelete
  8. Sjogren's Syndrome Herbal Treatment may improve various symptoms. Dryness in the eyes and mouth are symptoms of Sjogren’s Syndrome

    ReplyDelete
  9. I Am Mrs vera, i live in Texas (USA).
    [READ MY STORY. ON HOW I GOT MY Sjogrens CURED].
    Truthfully, i was tested Sjogrens positive last 3years. I keep on managing the drugs i usually purchase from the health care agency to keep me healthy and strenghtful, i tried all i can too make this disease leave me alone, but unfortunately, it keep on eating up my life, this is what i caused myself, So last few 4days i came in contact with a lively article on the internet on how this Powerful Herbal Healer get her well and healed. So as a patient i knew this will took my life 1 day, and i need to live with other friends and relatives too. So i copied out the Dr Okoli the traditional healer’s email id: dr.okoli.spell.temple@gmail.com, and I mailed him immediately, in a little while he mail me back that i was welcome to his temple home wereby all what i seek for are granted. I was please at that time. And i continue with him, he took some few details from me and told me that he shall get back to me as soon as he is through with my work. I was very happy as heard that from him. So Yesterday, as i was just coming from my friends house, Dr Okoli called me to go for checkup in the hospital and see his marvelous work that it is now Sjogrens negative, i was very glad to hear that from him, so i quickly rush down to the nearest hospital to found out, only to hear from my hospital doctor called Browning Lewis that i am now Sjogrens NEGATIVE. I jump up at him with the test note, he ask me how does it happen and i recide to him all i went through with Dr Okoli. I am now glad, so i am a gentle type of person that need to share this testimonies to everyone who seek for healings, because once you get calm and quiet, so the disease get to finish your life off. So i will advice you contact him today for your healing at the above details: Email ID: dr.okoli.spell.temple@gmail.com… CONTACT HIM NOW TO SAVE YOUR LIFE: ( dr.okoli.spell.temple@gmail.com ) Or whatsapp him on +2347031991061

    ReplyDelete
  10. Herbal Treatment for Sjogren’s Syndrome information about the Symptoms, Causes and Diagnosis. Natural Herbal Treatment for Sjogren’s Syndrome with Herbal Product Neteton Natural Supplement for dryness of the mouth and eyes.

    ReplyDelete
  11. Herbal Treatment for Sjogren’s Syndromeinformation about the Symptoms, Causes and Diagnosis. Natural Herbal Treatment for Sjogren’s Syndrome with Herbal Product Neteton Natural Supplement for dryness of the mouth and eyes.

    ReplyDelete
  12. my wife was diagnosed with Sjogren syndrome last year. of all the horrible symptoms Joint
    pain, swelling and stiffness, Swollen salivary glands, Skin rashes or dry skin i was given
    Hydroxychloroquine but wasn't helping her situation. it becomes worst each day. while surfing
    the internet, i saw people testifying about Dr Jude Herbal formula on how it helped them cure
    their sjogren disease. i quickly copied his email and whatsApp number. i contacted him and
    made my orders. it was delivered to us in three days. she was on his Herbal medication for three
    weeks after which she went for test, to our greatest surprised it came out negative. it been 9
    months now, up till now she haven't gotten any symptoms. she went for another test last three
    months ago and the result came out to be negative again. all thanks to Dr JUDE HERBAL
    FORMULA. Visit DR JUDE NATURAL HERBS on [drjudenaturalherbs. blogspot. com]. or you can reach him via email [ drjuderobert@gmail.com] or reach him via whatsApp
    on 1860-532-0721.

    ReplyDelete
  13. I want to share a testimony of how Dr LATIFAH herbal mixture cream saves me from shame and disgrace, my penis was a big problem to me as the size was really so embarrassing,and i was also having weak erection problem. I can't make love to my wife and my penis was just too small a full grown man like me having 4 inches penis and to worsen it i don't last in sex i cant even last two minutes it was really a thing of shame to me. My wife was really tired of me because my sex life was very poor,she never enjoyed sex,i was always thinking and searching for solutions everywhere until when i saw a testimony of how Dr.latifah herbal mixture cream have been helping people regarding their sex life, so i decided to give him a try and to my greatest surprise in less than one week of taking the herbs my penis grow to 8 inches i couldn't believe my eyes and as i speak now my penis is now 8 inches and i do not have week erection again. I can make love to my wife longer in bed. And my marriage is now stable,my wife now enjoy me very well in bed. can contact maamtifah@gmail.com or call or what-apps him through +27785167256. . .he also specialize on the following things

    BREAST ENLARGEMENT
    BREAST LIFT & REDUCTION
    PENILE/PENIS ENLARGEMENT
    GENERAL BODY SLIMMING
    HIPS & THIGH REDUCTION
    REGAIN VIRGINITY BACK
    Thanks for the Enlarging my penis sir, you indeed save my marriage...I am really grateful sir,

    ReplyDelete
  14. LOVE SPELLS THAT WORKS I am sharing this testimony to partners suffering in their relationships because there is an enduring solution. My husband left me and our 2 kids for another woman for 3 years. I tried to be strong just for my kids but I could not control the pains that torment my heart. I was hurt and confused. I needed a help, so i did a research on the internet and came across a site where I saw that Dr. latifah a spell caster, can help get lovers back. I contacted him and he did a special prayer and spells for me. To my surprises, after some days, my husband came back home. That was how we reunited again and there was a lot of love, joy and peace in the family. You can as well contact Drmaam , a powerful spell-caster for solutions on her contact maamtifah@gmail .com or directly on Whats App: +27605775963

    ReplyDelete
  15. Get cured from hsv-1&2.. visit Robinsonbucler @gmail com,,....

    ReplyDelete