SHE’S ALIVE!

SjoDry Survives..

It is with great relief that I can report that SjoDry did not hear the “L” word (Lymphoma). I can always look back at my previous blog posts and tell exactly how I was feeling when I wrote them.

Usually a one word descriptor like: depressed, frustrated, angry, stuck or some such visual describes how I was feeling on the day I wrote the post. In my last post, I would call that my “scared” or “fear” post.

Yes, I was shakin in my uncomfortable shoes about my upcoming bone marrow biopsy. I don’t like pain (who does) and anything I had ever heard about bone marrow biopsies reinforced that fear. I was surprised that the gal who was performing my test allowed my husband to sit in and watch the whole thing. She did make him sit in a chair in the event that he would pass out. I was well positioned in the bed in case I passed out.

Something I wish to never experience again.

Something I wish to never experience again.

15th Century Drill

15th Century Drill

And as I feared, the entire thing was very painful during the actual procedure and for one week after. Steve reported that the instrument used to perform the test looked like an “Auger” (a tool used for boring holes into wood or the ground). I would have described it more like an ancient torture device. It just does not seem right or that people were meant to be drilled into. It definitely gives new meaning to ‘boring into one’s soul”  :-/

SO WHAT’S THE VERDICT?

Who knows is the short answer. You all know how this journey goes, right! All I can say at this point is that the biopsy they did, does not indicate Lymphoma that they can see at this time. And I am truly grateful for that blessing. We are all so used to chronic: (illness, pain, appointments, doctors, tests, bills, fatigue, symptoms ad nauseam, etc.) that it easy to miss some of our blessings when they happen. And they are blessings no matter how they arrive or what size they come in.

ALLOW ME TO SHARE..

I am so excited about one recent blessing that I simply must share it with you! (Think giddy). As I have mentioned to you before, I (along with a wonderful friend of mine), co-lead a Sjogren’s Syndrome Support Group in Pittsburgh, PA. Our official group name is: Sjoggies In Pittsburgh (SIP). A few months back, I was contacted by a reporter from one of the local newspapers. She told me that she writes for a quarterly magazine which is inserted into the newspaper. The Magazine is called, Caregiver Magazine. She explained that she wanted to write an article about Sjogren’s Syndrome, could she interview me?

You bet..I would love to share all of the dry details with you. So we discussed Sjogren’s and she also interviewed my doctor, who happens to be starting a Sjogren’s Syndrome Clinic in Pittsburgh. The article was just recently published on Feb.17th.

As I write, we have now gotten 5 new members for our group. But what really excited me is that two women who read the article, have chronic conditions & Rheumatologists , with no Sjogren’s Syndrome Diagnosis. In the article, it described the many symptoms that we have, how they come & go and that there are surely many people walking around with Sjogren’s, who don’t even know it, etc.

When the 2 women read the article, they immediately recognized themselves. You know, the famous ” Ah Ha “ moment of revelation. One of the two women lives in Philadelphia and was just here for a short visit with her parents and happened to read the article. Both women will be going back to their docs armed with Sjogren’s knowledge in an effort to pinpoint whether they do indeed have Sjogren’s Syndrome and even more importantly…getting treatment!

Yes, it was only two women…but just think about how awesome it would be if we can get our doctors & medical professionals and the public-at-large educated about Sjogren’s.

IT’S STARTING TO HAPPEN!

There is already an unprecedented amount of research being done on Sjogren’s Syndrome at this time. My doctor is very excited about what is happening in the medical research world of Sjogren’s Syndrome. The more that ALL medical professionals are educated about Sjogren’s, the more tests, research and improved treatments that will be developed to treat Sjogren’s sufferers!

I don’t know about you, but that really excites me. I consider it a BLESSING that two women who were unfamiliar with Sjogren’s may now get the treatment and answers they need to provide them with a better quality of life, and all because of one little ole article! Now..if we can just duplicate that in every city and state, we can not only get the word out in a BIG way, but we can really make advances in fighting the good, albeit VERY DRY, Sjogren’s Syndrome fight.

So let’s see, should I call this my “excited” or my “hopeful” blog post? Call it what you will, but anything that can advance the knowledge and awareness of Sjogren’s Syndrome not only helps those two women, it helps all of us. So their blessing, is my blessing, is your blessing!

Here’s to ALL of us getting the word out about Sjogren’s (pronounced SHO-GRINS..haha) Syndrome! This is commonly known as a call-to-action. Hint Hint.

SjoHopeful 😀

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About vitalsignspgh

Sandy Burkett is the Creative Engineer, President and Owner of Vital Signs. Vital Signs is a certified Native American/Woman-Owned custom sign and graphics company located in Carnegie, PA.
This entry was posted in And the research says..., Random, Searching for Answers, Sjogren's Advocacy, Sjogren's In The News, Symptoms, Uncategorized and tagged , . Bookmark the permalink.

6 Responses to SHE’S ALIVE!

  1. Joyce says:

    That is a blessing Sandy and so are you! 🙂

  2. Val Davids says:

    You are so lucky in the States. Here in Australia people know next to nothing and there is no research. If you bloods come up normal the doctors tell you there is nothing wrong with you and there is nothing they can do for you. Never mind the dry eye, the dry mouth, the pneumonia with dry pleurisy and joint pain and fatigue.It’s so frustrating and depressing!

    • vitalsignspgh says:

      Valerie,

      I don’t know how receptive your docs are to a patient bringing them research?? My own doctor does not believe a patient has Sjogren’s unless the patient’s bloodwork is positive. My doc actually changed my diagnosis from Sjogren’s, which had been given to me by a doctor at a different facility in a different state,to Sicca (Dry eyes; mouth). I happen to have a severe immune deficiency and found out that I am unable to produce the antibodies that physicians typically use when diagnosing Sjogren’s & other autoimmune problems. I found a scholarly medical article that said this on PubMed. I actually printed the article & highlighted it in yellow & gave it to him. He did change the diagnosis back. Perhaps he had not had a patient like me before & did not know that. But he knew that 20 – 40% of patients test negative, but have many active symptoms.

      There are many medical articles that you should be able to access from where you are in Australia. Check Pub-Med and also there is something called: Google Scholar. Just do a regular google search for Google Scholar. Then you can click on Google Scholar & search for medical articles. Play around with different topics, such as: Seronegative patients with Sjogren’s Syndrome or Sjogren’s Syndrome and seronegativity, etc.
      This may help you find some info.

      The gold standard medication given for Sjogren’s and other autoimmune conditions, is: Plaquenil (it is an anti-malarial drug). I hope that you are able to be treated with this. Many docs will still treat their patients with Plaquenil, even if they do not test positive for Sjogren’s.

      Also, there is a Sjogren’s organization in Australia: http://www.sjogrens.org.au/

      Hope you get some relief.
      SjoDry

  3. Janet says:

    Sandy, Thank you for sharing. It is a hopeful AND exciting post. Where can I view a copy of that article? Would love to read it and share it. Thank you, Janet

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