Finding Out I had Sjogren's

Never would have guessed I’d be 21 sitting on my parents couch watching Foster’s Home For Imaginary Friends on a Friday night.

I spent summer of 2012 losing weight, getting healthy and prepping to run a 5k to celebrate my 21st birthday. When my birthday rolled around I had a sore throat.

A senior in college in Chicago with three jobs, I didn’t have time to take time off for a sore throat. I waited about 11 days before final shelling out nearly $150 for a minute clinic visit, where I was told I had strep throat. After antibiotics I would be up and at it. Stil two weeks later I had a persistent cough that was lingering.

Mid October I visited another doctor shelled out another $150 (Out of state students check out your coverage) and was told a cough was very usual after strep, given some Promethizine Codiene and sent on my way.

Feeling like Lil Wayne, I didn’t think too much of it. Focused on finishing the quarter and not losing anymore money missing work or paying the doctor I let my health deteriorate. I started to feel extremely sick. I would feel fatigued no matter how I slept. I had several boughts of vertigo. Nose bleeds, headaches, fevers, and night sweats were constant. I thought maybe I was developing diabetes. While I hadn’t had a change in weight I was eating and exercising how I had been just a few months ago.

Through this time one thing progressively got worse, my cough. My friends referred to me as, “The Black Plauge.” I could not go from inside to outside or vice versa without coughing for several minutes and becoming short of breath. Several times a week the coughing would last until I begin to throw up. I had several episodes where I felt as if I was going to choke to death and my throat was going to close up. Still, I didn’t go to the doctor.

By Thanksgiving I still hadn’t taken my symptoms seriously. On a stroke of coincidence or perhaps fate I bought a ticket to go home the next day totally last minute. When I arrived back in Denver my parents encouraged me to go to doctor and the cough taken care of. I was given a diagnosis of pneumonia some antibiotics and a rescue inhaler and sent back to Chicago.

Now thinking I had pneumonia I did the full course but saw virtually no differences in my condition. I couldn’t walk upstairs without heavy breathing, and the inhaler had no benefit. When I came back home for Christmas, I went to another doctor and an X-ray found that the “pneumonia” had not improved and the cold Chicago air had been no benefit. I was given another round of antibiotics and told to come back in a week.

A week passes the doctor says there is no change. At this point I become concerned. I was constantly fatigued and moving slower than ever. I was set to go back to school the next week after taking my sister to the Justin Bieber concert. The day of the concert, I go in for another X-ray, again. No change.

The Doctor suggests another round of medicine, to which my father objects. His reasoning being, “If you had pneumonia antibiotics would have cleared it at this point.” So my flight to Chicago came and went. My parents refused to send me back without an answer on why I was still sick.

I met with a specialist, who put me through several tests and some x-rays. He said I would get a biopsy a standard day procedure and have me back in school as soon as possible. However the abnormality of my tests results required the doctor to suggest a surgical biopsy that week. I was terrified. If it wasn’t pneumonia what else could it be I had no clue an for the first time I was scared of what was going on.

The biopsy fortunately went off without a hitch. Time however was ticking away. I couldn’t move for days after the surgery and I was in so much pain. There went another week of classes missed, another week of work off and another week not at my internship. And still no diagnosis. The pathologist was unable to diagnosis the problem so my sample was sent to a specialist in Michigan.

Feeling better the next week I waited for the results. Finally I was called in midweek. In a bunch of complex phrases I was told my body was producing antibodies that were attacking my lungs. It was causing the inflammation as well as irreversible scarring. While having several symptoms of Lupus fortunately it was ruled out by my bloodwork. What I was diagnosed with was Sjorgren’s Syndrome.

I had never heard of the disease before. After a series of questions and discussions the things that I thought were rather innocuous all aligned with the condition. The great news; it was treatable and containable. The bad news, I was going to have to take the quarter off. As I had to get my lung function improved Chicago would not be a conducive environment. At the point of diagnosis I couldn’t walk around Target without my oxygen levels dropping to low levels let alone half a mile from my apartment to work.

It sucked a lot at first. I was ready to graduate and be done. I couldn’t even focus though on all the negatives of the situation. I was more thankful that I had a family to support me, I had access to the medicine I needed and that I the talent and energy that has got me this far wasn’t fleeting.

While I’m taking this quarter off I hope to write about my experiences with Sjogren’s and my road to recovery. It was mind boggling when I thought how far my health had plunged just from the end of Summer. Just months ago I was running 3 miles a day. At this point I would be thrilled to walk that far. I never thought it would be difficult to yawn or take in a deep breath. I took my health for granted and I never want to do that again.

In these next coming months I want to refocus myself on being a happy healthy me. I'm still very apprehensive though. There are things I have questions about. The effects of the medicine? How I will care for this long time? And recently I have been having pain throughout my whole body in my joints and I'm wondering if this is symptomatic. Look forward to reading others stories and connecting!

Hi Kthoma,

Terri is absolutely correct. While we both have Sjogren's, we also both have SLE. I have NEVER had a positive RA or ANA in my bloodwork...my lupus was found with a kidney biopsy. Just because your blood may be negative, the meds themselves can cause a false negative or positive. You may have to dig deeper just to rule out SLE.

If you do not feel well soon, please take all necessary steps to find out if you do in fact have SLE.

XXX,

DeAnne

Kthoma,

Your positive attitude will take you far. There will be days when it may seem overwhelming, but that is what we are here for. Terri (Tez_20) Ally (Allergic), Faye and many others have both Lupus and Sjogren's. There are many symptoms that overlap, but this is a close knit group and we are more like a family. Don't fret if you feel the need to just let us know if there is anything we can help you with. I have made so many wonderful friends here and would suggest as did Terri that you join the other discussion board as well.

Big hugs,

DeAnne

I can relate and then add....I had the right perotid gland removed it came back as negative for cancer...in 8 weeks the left one swelled up...no antibiotics would work..I asked the ENT surgeon if I were in his family what would he do...He stated that with all the antibiotics I had been on..and with continued problems I wiould take it out...so on Christmas eve...morening I headed to surgery for his only opening...guess what ? It came back positive..thats when I learned that 4 out of 10 Sjogrens patients will have NHL...my confirmation was done at Mayo along with local lab at the hospital it where surgery was done...hello chemo ...no radiation could be done as my Sjogrens was severe...no tears, tastebuds...I could not tell you the difference from a baked potatoe to oatmeal...and then all the medications and complications from them...it has been one roller coaster ride for my life...and yes even to now go for a walk, I do not take it forgranted...as it is precious...

Thanks for all your comments. I'm so appreciative for the support and advice. I look forward to getting to know you all. I'm so thankful to be a part of this community!

Hi Kthoma,My name is Anna,I am from Greece.I am new here.I read your story.It reminds me of me,I have difficulty breathing too.when I walk,talk etc.My eyes are so dry.My mouth ,my lungs ,everything is dry.