Friday, August 12, 2011

Final Diagnosis

       When the world says, "Give up,"
       Hope whispers, "Try it one more time." ~ Author Unknown


"When it is dark enough, you can see the stars." ~ Ralph Waldo Emerson





It has been three years and eight months. That is forty-four months of doctor's visits, difficult procedures, emergency room visits, and hospital stays. One hundred and seventy-six weeks of tears, doubt, frustration, and anxiety. And approximately one thousand two hundred and thirty-two days of hope.




Hope for an answer. An answer that will give my illness a name. One that will give me credibility. One that will take the place of a doctor who says "I don't know" or "all your tests are negative." One that once and for all, will allow me to go through life without so many unanswered questions about my body.




I got my answer this past Thursday at an appointment with my rheumatologist. It wasn't really supposed to be a shocking answer to the big question of what disease has plagued me for so many years. The first mention that I may have an autoimmune illness called Sjogren's Syndrome was about in 2009, when I was seeing my previous rheumatologist Dr. Monarch in Boston. The problem was that the blood work for the disease was negative and continues to be so to this day. However he felt that due to the nature of my symptoms and the fact that they couldn't come up with another diagnosis, Sjogren's was the likely answer. I even had a lip biopsy done to try and prove his theory as a lip biopsy was the diagnostic gold standard for Sjogren's Syndrome. But of course, it came back negative and the only answer I had was that I could still have the disease with a negative lip biopsy which although rare, is possible.




Despite being told that there were no doctors in the United States that specialize in Sjogren's, I found a rheumatologist in Hartford who specializes in the disorder. Within months of seeing this new doctor, pieces began to fall into place, pointing us in the direction of a diagnosis. I had a nuclear medicine scan of my salivary glands that was suggestive of Sjogren's and within a few months of the scan, I began to have difficulties with my parotid and other salivary glands, which along with my other autoimmune appearing symptoms, made me relatively sure that we were on the right path after all.





But there was always doubt. The doubt began five rheumatologists ago (I have seen over twenty specialists overall) when the first one I saw looked at my very painful fingers/hands and told me he didn't think this would turn out to be an autoimmune disorder because my hands weren't swollen and my labs were normal. Doubt continued to grow doctor after doctor, test after test, as a prominent Boston pulmonologist told me that my breathing issues were in my head. Doubt plagued me as I would go sit in my car after each appointment and just cry. Cry because I was so frustrated knowing how sick I was and yet not being able to prove it most of the time. Cry because it was suggested that I follow up with a psychiatrist for possible conversion disorder and depression. Cry even harder because I did have a history of depression and was even told that I had bipolar disorder, only to find out from the same psychiatrist that he believed my mood issues to be related to the autoimmune disorder.




But yesterday I was vindicated. My new rheumatologist, Dr. Parke, had suggested to me months ago that I should consider a repeat lip biopsy. There was always a question for me (and possibly for her too) that because I did not have dry mouth as a symptom when I had the first biopsy done, that was the reason it was negative. After doing a lot of research through the Sjogren's Syndrome Foundation, I was also concerned about the technique used to perform and analyze the biopsy when it was done the first time. There is a very specific standard used for taking the sample and analyzing it. Dr. Parke and her pathologist at UCONN had successfully done this numerous times before. We decided to go ahead and do the second biopsy. The results were not going to change much in terms of my treatment; Dr. Parke was still going to treat me as a Sjogren's patient if the results were negative. However a positive result would make me eligible for participation in clinical trials if I so chose and the benefits for me mentally and emotionally were immeasureable.




I went into my appointment yesterday not even expecting the results to be ready as Dr. Parke had warned me that it could take several weeks. But the results were in. I had Sjogren's Syndrome. And all I could do within seconds of her telling me that was cry. I cried again in the parking garage for a good ten minutes before I could even get back on the road and I cried on and off all the way home, as well as the rest of the evening. I was shocked. As much as I had hoped for an answer, I never expected to get one.




I never expected my response to the news to be that emotional. It was (and still is) this weird combination of relief, joy, sadness, and anger all at the same time. I am not even sure anyone can understand it unless they have been in a similar situation. I know with one hundred percent conviction what I am battling. I can look at my doctors differently because I am not always sitting there in fear over how they perceive me. I have credibility with the medical profession as a patient. I know without a doubt that I will be taken more seriously when I show up in an emergency room or in front of a new medical professional.




I don't want this to sound like because of the diagnosis, I feel like I can now be identified or defined by my illness. I have tried for years not to let that happen and I am not about to start now. If anything, the opposite is true.

 I am free.

I am free from the questions and speculation. I am free from doubt. I am free from being a hostage to a medical system that frequently makes judgments of its patients just because they cannot find the right answers. Well, at least for now. Most importantly, I am free from myself. I can spend less time looking for answers and more time fixing what is wrong with me.




And yes, there is still a lot wrong with me. The sadness/anger aspect of my emotional reaction to this diagnosis is very real. When I heard the news Thursday, it brought back every bad memory I have had dealing with this illness over the past several years and trust me, there are many. It reminded me of how I let very educated professionals make me doubt myself at times. It reminded me of days, before anyone would even treat my symptoms, in which my mother had to help me bathe myself and go to the bathroom because I could not use my feet and hands to do it for myself. Of countless hours in the emergency room being poked and prodded. Of losing my job of ten years as a pediatric nurse because I could no longer get to work on a regular basis.




Yes, it is best for me to have a diagnosis but somewhere in the back of my head, I always hoped that someday, this would all just go away. All of it. I envisioned waking up one day and I would be symptom free and we would be able to look back and say we didn't know what it was but now it's gone. Unrealistic? Of course. But now I know for sure that will never happen. I have a chronic autoimmune illness that has no cure or even approved treatment for. I will have it for the rest of my life. I think that deserves a certain amount of sadness and anger, but not for too long.




That being said, getting that diagnosis yesterday was also a strong reminder of how far I have come and what kind of person I have evolved into. I no longer need my mother to help me shower every single day. I can leave my house most of the time when I need to. I am seen by a medical professional now maybe every two weeks instead of several times a week. I still cannot work, but when I am well, I am able to be of service to people in small ways. My life has a purpose other than being a patient.




I have used this adversity to become a much stronger and self-reliant person. I am bold. I don't take my good days for granted. I live my days like they count because I never know when a bad day is going to come. Struggling for a diagnosis has taught me patience, courage, and perseverance. It has taught me greater compassion for others. The quest for a diagnosis has taught me that doctors are human; they are not God and therefore we cannot expect them to act as such. And probably most importantly, this experience has taught me the power of faith and prayer. For that, I am most grateful.

14 comments:

  1. Christine, Well said. I too have Sjogren's and I also experienced the feeling of relief as finally I have a name for my condition. Also, I was able to prove to the doctors, that it is not all due to stress and that it is not in my head. I was in denial for awhile since I am one of the minority (male) who get this disease. This is probably why my Rheumatologist had a lip biopsy done for the final diagnosis. My lip biopsy was positive. I am on the Sjogren's FB website so I am sure we will chat with each other. Take care.

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  2. So glad that's finally official - ((HUGS)) Char

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  3. It took a long time to get a diagnosis for me as well, due to negative blood tests. I was lucky to have doctors who still believed it was Sjogren's, so my sanity remained intact.

    Good luck to you.

    Diane

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  4. You describe it so well. So glad you have finally got some concrete evidence to go with how you feel and have felt for so long. I am not glad you have it but at least an answer to a long awaited suffering. Now maybe it will be easier to deal with. It is a wicked disease/syndrome to have for life. God bless. Harriet

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  5. I completely understand every word you wrote - because I was on the exact same journey. Emotionally and physically - and no one understands unless they have been there. Wanting to be well yet trying desperately to prove you are really sick...such an odd complicated mixture to live in day after day. People thinking you WANT to be sick...it is so difficult. But my dear, you are so right - now you can let go of the proving (which takes up so mush space in your life) and hold on to the being well part. All your time and research can now be devoted to understanding your illness and doing whatever it takes to make your life more livable. I am SO glad you got your diagnosis. There are no words that can describe how wonderful that feeling is. Now...let go and LIVE!!!

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  6. Thank you all so much for your comments and feedback.One of the biggest things that has been missing for me over the past few years (until recently) in dealing with this disorder and the peer support. I have had so much love and support from family and friends so I never realized what I was missing until now. It helps so much to know that other people have been on similar journeys and that someone can identify with the ups and downs of having an autoimmune disorder. I had tried to find a support group in the Massachusetts area with no luck so today, I am even more grateful than usual for the internet.

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  7. I meant to say: one of the biggest things that has been missing for me over the past few years in dealing with this order IS the peer support!

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  8. I am so grateful to know you! I get so much strength from your strength, and so much joy from being around you. You are a blessing in so many ways. Nobody said life was going to be easy, but having your cage rattled by loss or illness changes us. For the better.

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  9. Well, I am grateful that God put you in my path Carla Meredith!!

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  10. hi..although I do not have sjogren's ..I do have lupus another autoimmune illness..and with although right now I do not have sjogren's with lupus it is very common to develop other autoimmune issues with it .like having lupus/fibromyalgia or lupus/scleroderma etc..there are many similarities that anyone living with chronic illness go through ..and many of the medications we take are also similar..I do not know if you have facebook ..but if you do I have a facebook support group for people with lupus but I know there are people in my group with sjogrens as well.if you ever wish to come and check us out as another place to find support .you can find us at this link.
    http://www.facebook.com/groups/126936550682267/

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  11. I have often said over the years that we walk around in, essentially, glass bodies. We are that delicately balanced a mechanism when you think about it. And when it comes to "malfunctions" of this mechanism, modern medicine, even for all its incredible advances, can sometimes fail spectacularly to deliver the results wished for. I'm very happy for you that you persevered and that you finally found specialists who took extra pains to find out what is wrong with you. I hope that you continue to find your way to a level state of health.

    Namaste',

    Dawn

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  12. Anonymous ~ Thank you for that information. I wish you good health on your continued journey.

    Dawn ~ Thank you for the well wishes! You are correct that modern medicine often fails us. I am grateful that I was able to access Chinese medicine to help on my path to wellness!

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  13. I am glad you have this answer - I've been sick for over 20 years, and for the past 10 I have been diagnosed with a working diagnosis of Sjogren's syndrome. My bloodwork is negative. I am now showing signs of kidney related problems - that they say are not problems because the changes are mild and not catastrophic. I'm sure this is related to my Sjogren's, but the doctor will not do a biopsy and while he says he understands the pain I am in, and have been continuously in the kidney area for a year, he is only pursuing treating the symptoms. I feel betrayed by my body, and wish so much that I could have an answer before this thing destroys me. Invisible disabilities are so awful. I have worked from a place of hope but tonight I feel done in. I feel awful as I know so many are suffering worse than I, but I can't see an end to this. I will continue to pursue Qigong and hope that will bring healing to me. Sorry for venting here... I was googling randomly and I don't want my better half to know how bad I feel...

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    1. Hi Jane ~ No worries about venting here. I am glad you found this space where you felt like you could do that. It is horrendously difficult to be suffering with physical symptoms and to not have answers that you are looking for. Have you considered switching to a new rheumatologist? Maybe a new set of eyes and a doc who will be more aggressive in getting to the bottom of things would be a good idea.

      Have you by any chance had a lip biopsy for the Sjogren's? I am not sure if the biopsy you mentioned was a kindye or a lip biopsy.

      Invisible illnesses are awful because reality is, unless you have one, you have no idea what day to day life is like. I am glad you found Qigong. That is ironic because I just took my first Qigong class this past Saturday and it was good. I am hoping to try yoga at some point soon as well.

      I hope things start looking up for you soon. Feel free to contact me via e-mail or Facebook if you would like.

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