Hello all, and Merry Christmas! I've decided that I wanted to share my story with you all in hopes that maybe I can help someone else or be a source of encouragement. I believe writing is very therapeutic for myself, and it will double as hopefully a source for others that need help and/or encouragement. First, I want you to know my story.... I am 31 years old (almost 32... next month ), and I am a remote Instructional Designer out in Northwest Indiana. I primarily work on our driver training modules for our clients and any sort of customization that clients are looking for. I travel to my headquarters once or twice a year. I always enjoy meeting new faces and seeing familiar ones. Although we live quite some miles apart, I always am treated like family when I visit. On one of my visits this past June, I was hospitalized. I woke up at in my hotel like any other business trip. I started getting ready for the day and brushed my teeth. As soon as I brushed my teeth, I felt this numbing/tingling spread across my chin, into my bottom lip and the tip of my tongue. It slowly crept into my left cheek. I went to a local hospital, and they ran a gambit of tests … blood, MRI, CT, echocardiogram, etc. I was discharged the next day with all tests showing gleaming health. Great! I'm extremely thankful, but I was still upset. Now, please don't take this as me being ungrateful! I love to see perfect test results, but at the same time, it is a struggle because I know my body... and something just wasn't right.
If I can rewind just for a second, for years I've been the "oddball"... the one that would say, "My hands feel numb..." or "My feet went all tingly when I was walking and I fell..." or "I just can't breathe right, and I'm just dead tired".... Many were supportive... many also questioned if it was all in my head... Was it anxiety? Sometimes people don't know how to voice what they are thinking appropriately even if they do mean it in the best way possible. But, when you are dealing with things that aren't able to be seen on the outside of your body, it is very easy to be skeptical... and I don't blame anyone for that. In summary, I've always been the "weird" one with the "odd" things that happened.
Fast forward now... From June until this past Tuesday, I have struggled tremendously. I have been in and out of doctors... some proving very helpful, some purely treating symptoms and some just handing me a psychiatrist referral and telling me to get my anxiety under control. It has been extremely tiring, not only physically, but mentally and emotionally. I can go on forever about all of my doctor appointments, but let me tell you one story that may help if you are struggling with your health and can't seem to figure it out... And please, I am not downing doctors for treating my symptoms. Many doctors don't have the knowledge of specific diseases nor have they even come into contact with some of these things. I truly believe that MOST are doing their best! But, here is a story... and I hope that this gives anyone confidence to be their own health advocate...
After I was discharged from the hospital near my headquarters, I flew home. I was a mess. My husband picked me up from the airport, and I broke down crying. I told him that I'm not making any of this up.. that something is truly wrong with me, but nothing "says" that something is wrong. I started on a course of many doctors. I had to be careful about doing my own research. I think it is great for you to read as much as you can, but please be careful with Google. There were many days that I believed today was going to be my last day on this earth based on what Google told me. I've determined Google is great for short blurbs of info, definitions, short explanations, etc. If you want to read up about particular conditions/diseases/etc, please look at medical journals and/or order books to read, highlight, take notes and jot down questions.
Anyway, after doing my own research, I was narrowing in on what I thought was going on; it had to be some sort of autoimmune disease. I wasn't sure, but with so many of my symptoms, I was guessing that it could be Sjogren's (SHOW-Grins) Syndrome. I visited a local rheumatologist. She was extremely kind. She sat with me for an hour, discussing my symptoms, and she ordered many tests. Once all the tests came back, I went into see her. One of my autoimmune tests (baseline test we will call it) came back borderline positive with a pattern that reflected certain diseases. This of course didn't mean I had any or all of those diseases, but it tells me that the pattern they discovered was one that some of these diseases take on in the blood (for lack of better words... I'm not a doctor, so bear with me ) … But, all of my SPECIFIC blood tests for Sjogren's Syndrome came back negative. Through all of my reading, I knew that you could still have certain autoimmune conditions but test negative, so I pushed on. I told the doctor that I still wasn't feeling well and it was constant. She explained to me that it could not be Sjogren's Syndrome, or possibly not any autoimmune disease. She told me to got get steroid shots in my back for the pain that I was having. She also said my symptoms were not the "classic" symptoms of Sjogren's Syndrome and too random too offer a diagnosis. As weeks went by, she stopped answering any questions and refused to do any other type of testing. It was like as soon as she couldn't "figure me out", she didn't want to help anymore. I was sad, frustrated, and started to wonder more if I was simply just crazy. I felt defeated. I kept looking for answers everywhere. My GP (family doctor) is amazing. I would go into see him and message him often. I could tell that he truly believed me, but he hadn't studied into far depth with these diseases. He recommended a different rheumatologist. I didn't want to go. I was so sick of being told nothing was wrong, and at this point, I was really starting to believe that maybe it was just all in my head. Reluctantly, I called and made an appointment.
My first appointment with my new rheumatologist was last month. I went in and talked to him, already knowing he had raving reviews and 39 years of experience. I expected, though, that this would be another wild goose chase again, and I would be "fine". Immediately, though, he put me at ease. He believed everything I was saying. He told me that even though my specific blood tests were negative, that doesn't mean I do not have this disease. He told me that his gut feeling, after hearing all of my symptoms, that this was Sjogren's Syndrome. The only for sure way to find out was to do a lip biopsy. Two weeks later, right after Thanksgiving, I had just that. I was sent to an ENT for the procedure, and he explained that the blood tests are great but only can diagnosis Sjogren's Syndrome 85% of the time. He made a small incision on the inside of my bottom lip and took out four or five salivary glands. I thought this was a pretty strange test, but I was happy that someone was still helping me find answers. The reason for the lip biopsy was to test for inflammation. Most autoimmune diseases cause lots of inflammation in the body. Your immune system is on over drive and not just protecting your body from outside germs and illness, but it thinks that parts of your own body are invaders. With Sjogren's Syndrome, the big thing is that your immune system attacks your glands that create moisture in your body - for your mouth, eyes, digestive tract, etc.
After what felt like forever (even though it really wasn't), I received my results. Without trying to go into medical terminology and me messing up the explanation, they found lots of lymphocytes in that biopsy. There were many white blood cells in there pretty much "fighting" my salivary glands... they are viewing them as an intruder into my body. This will cause inflammation. So, this finally proved why my chin, mouth, lip, etc. are tingly/numb... the glands are being attacked. There is no real reason that they know of that causes this disease. But, they thing there some people are genetically more susceptible to autoimmune diseases, and all it takes is the right trigger to activate them. I've read that anywhere from only 0.1% to 3% are affected with Sjogren's Syndrome. So, it is now diagnosed. I have an answer.
The past few days have been tough. I'm just trying to process it all. In a way, and there isn't really a word to describe it... other than "glad". I'm glad that I have a diagnosis. I have an appointment on Monday to start figuring out my treatment plan. I have joined boards and found others with exact symptoms like me. Sjogren's Syndrome can take upwards of five years or more to diagnose because the symptoms can be all over the board, and not everyone has the same symptoms. So, I am lucky that this only took six months. But as I said, looking backward, I just wonder how many of my "weird" happenings in the past years can be attributed to this.I am angry... It is an emotion that I can't hold onto, but I am upset that so many pushed this off as anxiety. I was given so many pills and referrals to go "talk to someone" because it was all in my head. That in itself caused anxiety, but I know my body... and I know that something was wrong. I am also scared. Scared for my future. It seems that people with this disease can live pretty much regular lives like everyone else. They just need to know when they need to take a rest. My scare is that this disease, with it affecting your glands, lymph nodes and just plain out your immune system, it increases your chances of developing lymphoma. That scares me to death. But, I need to figure out that I cannot live in fear. And, I have to trust that as long as I'm treating this disease, living a good lifestyle and keeping up with all of my ongoing tests and appointments, I'm going to be okay. I want to be able to learn as much as possible, so that I can watch for things with my own kids. You can't "catch" an autoimmune disease, and it's not necessarily hereditary, but some genetic factors can show up in families and get passed down to make them more susceptible. I know this was long, and if you have made it through, thank you!
I plan on using this to document my journey, to use my experiences to help and encourage others! If I may ask, please don't use me as a springboard to diagnose yourself or anyone you know, but please use me as a resource to reach out to. I am learning so much, and I have such a long way to go. I know that I am going to keep learning about this disease. I'm going to keep advocating for others. Please, whatever you do, don't give up on your health. I spent many days and nights crying, praying for it all to just stop... either stop or give me an answer other than "it's anxiety". YOU KNOW YOUR BODY! Keep pushing. No one will be your health advocate for you. Keep pushing on. I'm confident that with my rheumatologist, family doctor and homeopathic doctor/nutritionist, I am going to be on a better path now. I am a strong person that likes to push myself to the limits, but I have to realize that I can't do that anymore. I will continue to be strong, but I need to learn to teach myself it is okay to relax.
Please... if anyone wants to talk about anything, don't hesitate to reach out. I am an open book.... sometimes you may hear more than you want, though I truly want to embrace what I'm going through, and use it in a positive light. Merry Christmas to you all, and I hope you enjoy each and every moment this holiday season. If you want to read more about this disease, here is a great resource...Sjögren's Syndrome Foundation - About Sjogren's
-Stefanie-
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