About Sjodry..

My name is Sandy Burkett and I have joined the other 4,000,000 (+) Americans who suffer from Sjogren’s (pronounced Sho-grins) Syndrome. According to the Sjogren’s Syndrome Foundation, 9 out of 10 Sjogren’s sufferers are women. So I am in the majority of folks who share this autoimmune disorder; and in the minority of folks who understand it. I live in Pittsburgh, PA.  Driven by complete frustration, I have decided to chronicle my Sjogren’s journey.

I know that there are Sjogren’s Syndrome reference sites (see side panel) which provide all of the medical descriptions; diagnosis criteria; treatments and research studies currently being conducted. My intention for this site is that it is presented from the patient perspective. I hope to obtain many patient contributions to more fully highlight Sjogren’s Syndrome from the individual who has to live this journey each day.

 

35 Responses to About Sjodry..

  1. Janet says:

    Thank you for your website. Thank you for being able to express your experiences honestly and intelligently in a way I have not been able to. I appreciate everything you have shared. I admire the time and energy you have put into this knowing how you feel and struggle with this every day. I am somewhat new to the internet. I recently found your moving video ” A day in the life of a person with Sjogrens. Is there anyway to put that into a paper format? I will be looking forward to your blog.

    • vitalsignspgh says:

      Thank you so much Janet. I think that folks who deal with chronic illness need to find therapeutic ways to cope. Blogging is one of mine. With a frequently hard-to-diagnose illness like Sjogren’s, I think it really helps to communicate with others who are sharing the same journey.

  2. Dee says:

    Hi Sandy,
    It’s Friday night and I am home on the computer. To tired to go out, cook, eat and every other thing I should be doing. I don’t know how I got here but I did and I am certainly glad about it. I never thought I could laugh and cry at the same time but I did. I felt like I was reading my story but with a lot let humor than you have. I had Sjogrens since 1988 when I was thirty. I ended up treating myself with hydrocortone for two years. I gave up looking for answers. Doctors back then thought I was just totally crazy. All I had was hypothyroidism. Buck up, whiner. That is how they made me feel. by the time I was forty two and after the birth of my daughter. The symptoms came back with a vengeance. Along with menopause, stress, killer job etc., etc. I am writing this solely to say thank you. I had the best laugh I had in years. Also, the best cry. Hugs, Dee

    • vitalsignspgh says:

      Hi Dee.

      So glad you found me. I am always surprised to hear from anyone who happens onto my blog. I told my
      husband that I am so used to feeling isolated in terms of my Sjogrens and what I live with daily. It is easy to feel as if
      you are the only one that has it. I became an Ambassador for the Sjogren’s Syndrome Foundation & a telephone contact in the Pittsburgh area for them also. I was contacted by another local woman who has Sjogrens. We have decided to start a Sjogren’s Support Group here in the area. I have also decided to attend the Sjogren’s Patient Conference in April in Bethesda. Where are you located Dee?

      SjoDry (Sandy)

  3. Dee says:

    HI Sandy,
    Thank you for the quick reply. I know Pittsburgh very well. Moved from Philly to Central Pennsylvania. I have family in Ohio. I have made numerous trips to Michigan this year because the death of my father in July 2012. So, I have spent my fair share of time going through Pittsburgh. Love the city too. The next huge city in our country! The place to be. I have to apologize for my typo’s my ability to write has tanked. I am 54 and just got results back from Jefferson University in Philly that I now have mild, age related cerebral volume loss. I kept tell my Rheum that I felt like I have dementia. He told me to do “puzzles”. Puzzles won’t help me sort my bills and stop me from paying the wrong bill with the wrong check book.
    I believe I had Sjogrens since I was a child with the screaming leg pain that woke me up since I was a child and brought mom and dad to my room at 3:00 am with hot steaming towels of water or the profuse nosebleeds where I needed to have my nose packed. I am learning to find a sense of humor but it has been a long road for me. Loss of a great career, this has not been fun.
    I linked with a woman in Hawaii who is suffering too. Only without a diagnosis. I have read the Univ of Buffalo is coming out shortly with a more definitive test for Sjogrens. About time. My friend has been to JH but nothing was definitive. I have been there. My Rheum changed blood labs and I got a diagnosis. However, it took twenty four years. They continued to look for lupus which has not highlighted as one of my maladies.
    I so wish I could join a group, however I am in Central PA in the middle of nowhere. When I tell them what I have here they say, oh, dry eyes and dry mouth. No big deal. Most cannot pronounce the name which is infuriating.
    I so admire your involvement and your dedication. This disease needs advocacy. It can be a very nasty disease. Mine has progressed to involve other organs, like the lung, neuropathy etc. I won’t go into detail as we know the details. I would like to get rid of it and get my successful life back. I don’t know if this will happen.
    Congrats on attending the conference in Bethesda. How wonderful for us Sjoggies. Like I stated, I do not know how I found your site but I sat on the sofa in hysterics until I started crying. I felt like I was reading my life only you are a lot more organized than I. You have a great sense of humor and that is what this disease needs. Someone who can express the suffering in a professional manner with a great sense of humor and sense of self. I know you expressed your isolation, I just feel women do not know what to do about this and their spouses, significant others, family, etc. are just not really supportive. I will tell my friend to look up your site in Hawaii as I think she could use a good laugh. She is where I was over a year ago. Very sick with no support. I am not a doctor that can diagnose her but darn, if her symptoms are not Sjogrens I don’t know what they are. I was going to start a blog in January, paid for the site and everything else that goes along with it the certs etc, I ended up canceling the site as I am just too exhausted to do this. I think the fight of living through this for decades has caught up to me. However, I am still passionate for our sisters out there. Something must be done. If caught early, I believe people can live a normal life but when doctors give up and the patient gives up nothing will be accomplished, as I do not know of one doctor who will knock on our door and ask, “How are you feeling”?
    I am on Plaquenil and medrol along with all the other stuff. I have plugs in my eyes. No more double vision. Yippy! I went to a new Rheum in Central, PA thinking I would not have to take the long drive to Philly but he alluded that Plaquenil and steroids are not used for this disease. Just that Exovac(sp?). I nearly ran out of his office screaming. No one, will take away my Plaquenil. No one. I am allergic to practically everything and took my doctor two years to convince me to take it. I was too scared without a definitive diagnosis. Oh, if only I would have known. But then, I most likely would have never shown disease activity. There is a Vectra DA test out there that measures disease activity for RA, which they say I don’t have. Physicians can use this test to see how the disease activity status is after medication intervention. Doc used it for the Sjogrens and Plaquenil use. The first test was moderately high with disease activity but still taking corticosteroids at the time. After Plaquenil, it dropped to normal. However, it has not helped with a host of other issues. The drug took away the crippling knee pain where I could barely get out of bed. The extreme dry eyes, the burning mouth syndrome, with sores on my tongue and a strange lumpy looking tongue have now subsided. So, if anyone tries to take away my Plaquenil be prepared for a fight. So, back to Philly I go to see my Rheum, he is young, daring and not afraid to use his knowledge in his practice. I thought I could save my energy up here but they are 20 years behind the rest of the country in everything. No offense Central PA. So, Sandy you are not alone – at all. We are all over the place suffering in silence. That is what women seem to do best except for the daring, strong women out here. I commend you. If all the women were diagnosed imagine how many hits you would have on your site. But until this disease is recognized and it is coming around, slowly but surely with your help and many others. The disease is taking its’ place in the medical journals. But until they learn how to pronounce the disease name. I don’t think it will become a truly recognized, devastating disease, that it can become without treatment. I am tired of telling people what I have and I hear, “What! Never heard of it! You look fine. I had to start carrying a picture with me and say look at this. Now, do I look fine? The comment was, “That isn’t you.” My point exactly. That picture was no longer me.
    Sandy, I cannot express how you made me feel. I actually felt a little alive again after your story. I recanted your story to my daughter while in the kitchen and she was also in hysterics. It was fun laughing again. However, understand I do feel your pain and alienation. We are out there just hidden in our pain and isolation and this seems so unfair. It seems that many of us were accomplished professionals until this hit. I can’t imagine how I could possibly work without spinning around trying to figure out what I am supposed to be doing. It is a tough disease, fight for us. If there is anything I can do to help. I would be willing. Sorry, the response is endless. I am going to try to convince my Rheum to push my steroids up to a higher dose as I know when I was given a shot of, ( I have forgotten the name of the steroid) gluco cortisone for an allergic reaction in the summer I was actually able to do my yard work and cook. For about a week. Then back down again. I have lost over 40 lbs. in four years. I was always thin to begin with but now I am a rail. I envy everyone on a diet. I am sick of Ensure! Take care of yourself. Know there are others out here, just alienated by being told it must be stress or depression or you are over reacting or whatever they say that makes us feel less human. Thank you for the help you gave me. You did not even realize your sight could actually help another sister cope with a very unknown, but common disease. Sincerely yours, Dee

  4. Heather Parker says:

    Hi Sandy,
    Thanks so much for making this site. I will bookmark it for sure! I’m 35 and have been suffering for about 2 years now. My family doctor is awesome and seems to really understand. Unfortunatley, I’m not able to work any more, but I’m hopeful within a few years to get back. I look forward to talking with you more. Thanks again!!

  5. Hi Sandy, my name is Mary. I am 35, live in NJ, and have been exposed with primary Sjogrens 2 yrs ago inspite of having other autoimmune disorders. I found your blog after the AARDA posted a link to your you tube video. It was fantastic, you summed up everything I feel in a nice video less than 3 mins. It is so frustrating to explain to people ” what is wrong with me “. I plan to participant in the Sjogrens walk at the Philadelphia Zoo, and with your permission provide a link on my fundraising page to your video. Thanks so much for allowing your blog readers to know we are not the only one feeling this way, and hopefully united we can make change.

    • vitalsignspgh says:

      Hi Mary.

      I am so glad that you liked the video. Certainly you can put it on your fundraising page. I will be doing the walkabout in Bethesda this week. Are you attending the Patient Conference?

      SjoDry (Sandy)

  6. Unfortunately I am not, I wanted to but working every other weekend at the hospital it conflicted with my schedule. May I ask how you made out with your NIH testing, I had read it in a previous post. I participated in a clinical trial at University of Pennsylvania Presbyterian with Dr. Vivino, the opening speaker of the conference. He helps coordinate my care with my local Rheumatologist. I hope you have great time at the Conference and look forward to reading your blog about it. :0)

    • vitalsignspgh says:

      The NIH testing was inconclusive.

      For instance, there were irregularities on my lip biopsy, yet it did not meet the European criteria. I flunked at least one of the eye tests, but again did not meet the European criteria. I just went to a new Immunologist yesterday (that I liked). He said that my IgA deficiency number does not explain my serious medical history (chronic infections; GI issues; etc. or the removal of my lung from bronchiectasis at 14 y/o. He is testing me for lots of things like Adult Cystic Fibrosis; Celiac Disease; Metabolic Diseases; and some other “out there” kind of issues. You are very fortunate to have Dr. Vivino for your care. You mentioned your work…what do you do and how hard (with your health) is it to work? I am really struggling. 😕

      Sandy

      • Mary Charlesworth says:

        Sandy, I am so truly sorry. I realize how frustrated you may be, it makes you feel like you are crazy. Yes, I am fortunate to have Dr. Vivino, he suggested adding methotrexate to my Meds, I just haven’t been ready to take that step. To answer your question I am a nurse. I work labor and delivery. I agree with you, it is very difficult some days to work. I am 35, and not ready to give up my career, but I do know I will need to make adjustments. I work with a great group of women who are willing to assist me whenever I need it. I work part time 4 12 Hr shifts, then I am off 10. I have 4 children so just doing homework, dinner, ect is exhausting enough. My husband fortunately is wonderful, doing laundry and housework. Some days just vacuuming zaps my energy, I can be energetic in my mind but my body doesn’t feel the same. So damn frustrating! Lmk how the conference is, good luck and safe travels.

  7. So glad I stumbled upon your blog today! My HUSBAND was just recently diagnosed with SS. Actually, we are still in the process of finalizing the diagnosis – – as we were recently told by a wonderful doctor at Hopkins that the lip biopsy was not enough (which was exactly opposite of what the local rheumatologist told us … the one who also told us that brain fog was NOT part of Sjogren’s!). I read your “Open Letter …” to my husband today & he said he could relate to/agreed with 90% of it. I will definitely use it as I seek to educate our friends and loved ones (especially our 4 kids, aged 26 – 16) that he is NOT just lazy or dumb or old. (He’s only 52.)
    thank you!! ~Lisa

    • vitalsignspgh says:

      Hi Lisa.

      I am glad you found my blog also. I participated in a study protocol at the NIH. I am one of those folks who is seronegative (no positive blood markers). I had one flunked eye test (but not enough to meet the European/American criteria for SS). I had a lip biopsy with irregularities, but that did not meet the E/A criteria. The gal at the NIH said that there are many folks like me in that grey area. It is not uncommon. In fact I just saw my Immunologist yesterday and he said that he feels that there are many overlapping illnesses that have Sjogren’s-like symptoms. And the brain fog (OMG). Well..you probably saw that I blogged about that as well. 😀

      The Open Letter was something that I adapted for Sjogren’s Syndrome. Take it & play with it to fit your needs (which is what I did to the one I came across written for chronic illness). Definitely check out the Sjogren’s World Forum –great information there. After having just attended the Sjogren’s Patient Conference in Bethesda, I am pretty close to just making the trek to deal with a team of Specialists in a Sjogren’s Clinic that understand the complexities of Sjogren’s.

      Hope you get some answers soon. Is your husband on any meds yet?

      SjoDry

      • No meds yet … we are waiting for final confirmation of diagnosis, which we won’t get until late June because he has to have the complete eye exam/testing and x-rays of his ankles (only place with arthritis-like soreness) and ultrasound of his parotid gland. We are fortunate to live an hour from the Jerome Greene Sjogren’s Center of Johns Hopkins (http://www.hopkinssjogrens.org/) and they are coordinating everything now. So happy I found them – and that they take our insurance!
        I’m glad you mentioned seronegative – I didn’t know the word for it, but he has had two extensive sets of blood work and both were negative for Sjogren’s (and everything related). All of the immunoglobulin tests were in the normal range, too.
        I have not read your blog yet about brain fog but I definitely will! THAT is the most difficult part for me in the support role. There are days (mostly evenings) that are very much like living with someone with Alzheimer’s. I can’t tell you how helpful it is for me to read your perspective. He is not very good at putting any of this into words. (He’s too tired to even try….)

  8. brian pawsey says:

    Very interesting read Sandy, I am an Australian and read all I can about sjogrens and my other medical conditions.(I have only been diagnosed for 12 months but have had MS for thirty years).
    Whilst we have some low profile organisations here, we really need a famous Aussie person to increase the public awareness of the condition as Venus Williams has done worldwide with revelations of her condition.
    It has become a lot easier to explain Sjogrens with a reference “You know that thing Venus Williams has.”
    Anyway keep up the good work with your blog I’ll have a read from time to time so don’t forget
    us 10% males that are out there.

    • vitalsignspgh says:

      So glad you stopped by Brian. You are so right, we need lots more exposure about Sjogren’s Syndrome (everywhere).
      Take Care.
      SjoDry

  9. Thank you so much for this site!! I have sjogrens, as well, and am learning as I go.
    I started a blog at http://www.survivingsjogrens.com
    Feel free to check it out.
    Again, thank you for all you do!!

    • vitalsignspgh says:

      Hi bkellync.

      I apologize for the delay in responding to your comment. I have been doing battle with Sjogren’s. I appreciate your kind words & will certainly check out your blog!!
      And I thank you for all that you do. We fellow Sjoggie Mates need to stand in support of eachother. Especially, since we are the only ones who truly “get it”.

      Take Care.
      SjoDry

  10. Anu Pande says:

    Hi! I was suffering and had pains since last two months and finally after tests was diagnosed with sjorgren’s syndrome on Friday jan 10, 2013. I have pains and burning sensation through out. I am having hard time dealing with it. I just turned 44. And before all this I have been a very healthy person. I need help and I do not know what to do. Help please

  11. Anu Pande says:

    I am glad that I found your site. Just hot diagnosed since last three days and living with these symptoms seems very difficult. Seems life has taken altogether a different turn. I am married and have two kids. I have dreams of doing further good in my profession. But I am wondering. How it is going to effect me? Can I live a normal life now? I am so lost and I am a capable and strong woman. I do not know how to deal with this sjorgren’s.

    • vitalsignspgh says:

      Anu,

      Please accept my apologies for the delay in responding to your comment. I have been doing battle with Sjogren’s and have been immersed in doctor’s appointments; test & wiped out sick days. I would love to respond
      to your post privately. Please feel free to contact me at: sandy@vitalsignspgh.com

      SjoDry ~ Sandy

  12. cccourt says:

    Ripvanann referred me to your blog. It’s wonderful. I see you on the forum. You are quite talented and this must strengthen your resolve re: SjS. Thx for doing this. You are spot on.

    • vitalsignspgh says:

      Hi cccourt.

      Thank you for your kind words and my apologies for this late reply. I have been doing battle with Sjogren’s. I enjoy writing & never dreamed it would become so fun & therapeutic for me.

      Take Care.
      SjoDry

  13. terry munda says:

    Dear Sandy,
    I think your a wonderful writer. I am just like you! I feel better knowing you and others out there understand what we are experiencing. I can’t believe you put it just the way it is!
    I also have degenerative disc disease..fibromialgia. Mixed connective tissue disease, of course chronic fatigue and lots of pain. Post 360 degree back fusion. And neck problems …I feel great one week and in bed the next. Even one day to the next can be different. And I ALWAYS pay for overdoing on a good day. I’m 59 have grandkids I love to do things with. But I get really sick if I’m not careful. I had to quite work..I’m an RN .worked 30 years. I’m on disability. Filled for it with a law firms help. It took a year to get a Check. Its hard but I’m improving my quality of life and reestablishing relationships that suffered because all I could do was work and collapse. Good luck in all your writing. I think I’d enjoy a blog. How do I get started? A friend. Terry Munda.

    • vitalsignspgh says:

      Hi Terry.
      Thank you for your kind words. Your story is a familiar one. I am happy to hear that you are improving your quality of life. That is so important. With regard to a blog..I will tell you that I really know very little. I have always enjoyed writing & did not set out to have a blog about my experience with Sjogren’s. My husband & I own a small business and some smart person told us that we needed a business blog for credibility. So I attempted to teach myself how to blog & decided to focus on my Sjogren’s (I was worried that I would embarrass myself with work collegues if I jumped right into blogging about work not knowing what I was doing). I would highly recommend that you start out with a WordPress site. If you go to the WordPress site, there are loads of helpful tutorials. It is free. And I will tell you that it has become very therapeutic for me in my everyday Sjogren’s Journey.

      Let me know if you start to blog, I would love to follow you.
      Good Luck!
      SjoDry

  14. Great site–thanks for sharing your ups & downs with Sjogren’s. I was diagnosed with Lupus & Sjogren’s 2 years ago, so I’m still learning about the disease. Take precious care of you!!

    • vitalsignspgh says:

      Thanks Cheri.

      It is definitely a bumpy journey and there is a lot to learn.
      You take care of yourself as well.
      Thanks for your kind words.

      Sandy

  15. Diamond Cantrell says:

    I came across your blog while reading online about Sjrogrens and I’ve loved it. I was diagnosed with Sjrogrens about 5 years ago when I was 23. My mother is also diagnosed with Sjrogrens as well and has been since she was about 30 years old (she’s 48 now). It’s been such an emotional roller coaster trying to deal with the severe joint pain and fatigue and feeling like nothing is working to make it better. I recently started a new medication so I’m hoping that will provide some sort of relief eventually. I had to quit my job last April because of my Sjrogrens. It was a job where I was constantly on the go and on my feet and my body just couldn’t handle it. I literally couldn’t walk some days after working because my knees and other joints were so swollen. I also have a 2 year old daughter and just trying to keep up with her on top of dealing with the pain and fatigue has been difficult. My dry eyes have recently gotten much worse as well. I started Restasis this week so maybe that will help! It’s such a frustrating illness because on the outside you look so normal but on the inside you’re in debilitating pain. I feel crazy. I’ve been wanting to blog my Sjrogrens journey for a long time and you’ve really given me the motivation to do it, so thank you. It’s nice to know that my mother and I are not alone in this journey!!! Thanks for sharing your story with us.

    • Diamon, You definitely should write about your Sjogren’s journey. I actually started writing about it..only to teach myself how to blog (because I needed to create a blog for our business). I had no idea I would love it so much, or that it would be so therapeutic. Restasis has helped me a great deal. Bless your heart…a 2 year old. You are not alone! Be sure and check out: Sjogren’s World.org..there is a great forum with Sjoggies all over the U.S. & in different countries.

      Hope you get some relief soon!
      SjoDry

  16. sjogrensdiva says:

    Hi! I just came across your blog, less than 24 hours after starting my own Sjogrens blog. This is terrific! AND you are from Pittsburgh, my all time favorite city! (Went to CMU and Pitt) I’ll enjoy reading yours from now on. Mine ( all 1post) is Sjogrensdiva.com. It great to know there is another positive-thinking fellow sufferer out there.

    Regards,
    Susan

    • Hi Susan. Thanks for your kind words. Another burgher!! Did you move away? I will definitely check out your blog. I found that writing is incredibly therapeutic for me. It is one of the treatments I can always count on! Take Care,
      SjoDry

  17. Pingback: How to Survive in a Blog-Eat-Blog World: Be Like Sjodry & Parched - Patient Worthy

    • Wow! Thanks so much for the kind words. I find humor in everything..even Sjogren’s & my CVID.
      We can’t let these bothersome diseases we share our lives with…rob us of our sense of humor too!

      SjoDry

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