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Category: Sjogren’s Syndrome (Page 22 of 23)

Doctor, I Trust You

November 13, 2011 / / 4 Comments
“I observe the physician with the same diligence as the disease.” ~ John Donne

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source For the most part, it is difficult for me use those two words in the same sentence, unless the prefix “mis” is used in front of trust. In some ways, my mistrust of doctors is surprising because in general, I am a very trusting person. However like any other relationship, the patient-doctor relationship is vulnerable and when that trust is broken over and over again, it is then difficult to enter into another patient-doctor relationship with the confidence and trust that is needed to build a cohesive team.

https://purestpotential.com/kyicvpaglf I have very good reasons not to trust doctors. To start with, I am a registered nurse. I have spent a lot of time working in a teaching hospital and have seen firsthand the potential and actual mistakes that can be made when treating a patient. I have witnessed more times than I can count, novice and experienced doctors alike make grievous mistakes that sometimes have been thwarted by nurses and other medical professionals such as pharmacists. Sometimes, those mistakes do reach the patient.

go here However my bigger trust issues with physicians is due to my years of experience in being a patient. My first bad experience came when I was twenty-four years old and had Stage Two Hodgkin’s Lymphoma, which was misdiagnosed for over six months because two different doctors did not think it was probable for someone my age to have cancer. Then I was told several years later that heart palpitations I had been experiencing were due to anxiety; only to find out four years later that I had an actual conduction problem in my heart which was causing my heart to not function properly (AV Nodal Reentry Tachycardia). The third incident occurred over the past several years when I was battling a host of physical symptoms and was told by doctor after doctor that they could not find anything wrong with me. I was convinced I had an autoimmune disorder. Several doctors were convinced I was crazy. That myth was dispelled when a lip biopsy came back conclusive for an autoimmune disorder called Sjogren’s syndrome.

Tramadol Orders It would be easy to sit back after all of this and say “to hell with them” but the reality is, I need doctors. I also need to be able to trust the people who have my life in their hands. Easier said than done. So how do we do it? How do we build a trusting relationship with our physicians?

https://paradiseperformingartscenter.com/5eqsyynsju Like any type of relationship work we do in our lives, we have to start with ourselves. We have to look at what we do on our end that acts as a barrier between us and our doctor. For me, it was a matter of checking myself at the door. Because no matter who the doctor was or what the problem was, I always thought I was right. Of course I didn’t always let my doctor know this. Sometimes I would verbally disagree with a diagnosis or a treatment idea, but then other times I would go along with what they said, yet never really trusting that they had the right answer. The problem was, I was confusing thinking I was right in terms of medical knowledge with being right in terms of listening to my own body.

https://penielenv.com/fnhu69b2 The attitude of not trusting what my doctor was saying was counterproductive because in order to heal, you need to believe and have faith that what you are doing to your body to heal it is making you strong and well. I fully understand that I got this attitude from incident after incident of being let down by doctors, subsequently putting my life at risk. After a while though, you have to stop judging people based on something wrong someone else did to you in the past. It doesn’t mean we cannot be educated and well informed patients. It means that we are partners with our physicians and we need to hold up our part of that relationship.

https://www.yolascafe.com/yyntu8jjuo There are several other steps I have taken to build a trusting relationships with my doctors (I have several). To start with, I doctor shop. I find a doctor who is going to treat me with the care and respect I deserve. Because if they do, then when differences arise, we can attempt to work them out. I don’t doctor shop intentionally and I know this is frowned upon by the medical community, but if I have a doctor who either dismisses my current health concerns or cannot figure out what the problem is, I leave. Pure and simple. I may have worked on checking my cockiness at the door in terms of my medical knowledge, but I know my body. I know when there is a problem. Because of this tactic, I am on my fifth rheumatologist in three and a half years. And you know what? After all that time, I finally found one who correctly diagnosed the autoimmune disorder I have and is working with me to find the most beneficial medical treatment for my disorder.

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source site I go to my appointments prepared and well informed so that my doctor takes me seriously. I ask questions, lots of questions. Not questions to challenge their medical knowledge, but questions that require an explanation for a diagnosis, treatment, or medications. Answers that will help me to understand what the plan is and subsequently help bolster my confidence in them. Finally, I try to remember that at the end of the day, my physicians are just human. They are not perfect. They are not God. They are people like you and I who happen to have a lot of education; which enables them to be called “doctor”. Therefore, when one of my specialists forgets a detail about me and asks me again because she just returned from a weeklong conference on the other side of the country, I take a deep breath and just remind her.

source link Trust takes time to build. And patience. I am now starting to reap the benefits of taking these steps towards building trusting relationships with my doctors. I am more receptive to trying new approaches to managing my illness, whether it is conventional or alternative. I am less anxious. Although I still keep careful track of what is going on with my medical treatment, I am not lying awake night after night wondering if someone screwed up. I am confident in the choices I have made in my medical providers and because of that, I can give up some of the tight fisted control I have felt I have had to maintain over the past sixteen years or so.

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Doctor, Please Listen To Me!

October 4, 2011 / / 7 Comments
Although I talk a lot on this blog about my experiences with an autoimmune disorder called Sjogren’s Syndrome, I have dealt with and currently still deal with a multitude of other medical diagnoses. It would appear that when it came to the luck of the draw in the God designing Christine department, I got the short end of the stick. I was not a particularly sickly child, but once I entered my early twenties, it seemed like every few years a new medical problem reared its ugly head. I am not talking about common stuff either. Oh no, I got the wacky and unusual stuff….Hodgkin’s Disease (which is a lymphoma), AV Nodal Reentry Tachycardia (a defect in my heart’s conduction which required surgery), Factor V Leiden (a genetic blood clotting disorder), and of course the Sjogren’s Syndrome. Throw in some more common diagnoses like Hypothyroidism, Polycystic Ovarian Syndrome, etc. and you have a nice array of specialists that I have to deal with on a regular basis.

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go There is a point to mentioning all this though. Because of this ridiculous amount of exposure to the health care system as a patient and most significantly because of the challenges I have faced in dealing with doctors regarding the Sjogren’s, I have a very (and I mean VERY) low tolerance now for inadequate and impersonal medical care. As a nurse, I have always been a strong advocate for my patients; at times, even getting myself into a little hot water because I challenged my patient’s doctors when I felt that they were not being attentive or appropriate in their care of my patients. However as a patient, I was not always good at this. I got intimidated easily by my own doctors and always trusted that they knew what was best for me.

https://purestpotential.com/qszlf4ak9 Over the past few years this has changed dramatically because, as I mentioned earlier, I struggled so desperately to get the Sjogren’s diagnosis. Heck, I struggled to even get someone to believe there was something wrong with me. And in the end, I listened to my own inner voice. I was relentless in my quest and I finally got an answer.

https://alldayelectrician.com/8zr8801q About a month ago, I woke up with severe abdominal pain that had started a few weeks previous to that day but I had chalked it up to problems with my menstrual cycle. On this day though, I felt that something was really wrong. I called my gynecologist who despite his somewhat impersonal manner, had never done wrong by me. By the time I saw him, I was doubled over in pain. After examining me, he decided I needed an ultrasound which could not be done until the next day. He would not give me anything for pain and said that Tylenol or Motrin should help. It did not.

https://paradiseperformingartscenter.com/eutpld4fvvc The day after the ultrasound, I called the office as I was still in some of the worst pain of my life (which is saying a lot!) and I was looking for my ultrasound results. I was told by the nurse that there was small cyst on my ovary that would not be causing me this degree of pain and I needed to follow up with my primary doctor. And of course it was a Friday. I told her that I thought it was gynecological related and as I had issues similar to this previously, but just not as severe. Nope, I still got passed off to another doctor. At this point, I have been in severe pain for forty-eight hours and wished I was dead. My primary doctor was not in the office that day and I decided to go to the emergency room.

https://www.yolascafe.com/d9gnejyrm The end result of this trip to the emergency room was that I was dehydrated and a CT Scan showed that not only did I have a cyst on one ovary, but I also had a ruptured one on the other ovary therefore validating the high amount of pain I was in. I was told that it would take at least a few days until the pain would subside and they gave me pain medication to get me through the pain and told me to follow-up with my doctor in three days.

Order Tramadol Cod Only I never did go back to my gynecologist. I followed up instead with my primary care who I felt had enough knowledge to see me through the rest of this crisis. See because the problem was, I no longer trusted my gynecologist for many reasons. He knew me well enough to know that I would never be doubled over in pain unless something was really wrong. He did not adequately address my pain issues. He left me like that for over two days and then when I sought his help again, he dumped me on someone else when it was a gynecological problem all along.

click here I can’t let something like this go. There have been a few rare instances in the past few years where I have disagreed with the way one of my doctors has handled something and after having a discussion about it, it was resolved. But when I looked back to all my interactions with my gynecologist, I realized he sucked as a doctor. My visits were always rushed. I always felt like I was bothering him when I had questions about my treatment. He never seemed to want to address the fact that I have a mother with a history of both ovarian and breast cancer; therefore putting me in a high risk category. He didn’t take  time to do any teaching with me. He knew very little about how significantly my other medical diagnoses were affecting my life. He just didn’t seem to care.

https://onlineconferenceformusictherapy.com/2025/02/22/9jc6sja I don’t need each of my doctors to hold my hand and be my friend. But I DO need them to treat me as a person; a person who has been through a hell of a lot medically. I deserve to be informed. I deserve for them to be accountable. I am very well aware of how difficult it is for doctors to practice with all the insurance regulations and productivity requirements. But you know what? There are doctors out there who DO listen to their patients. I know because some of them are my doctors. Never in a million years would my endocrinologist let me leave her office in the kind of pain I was in that day without doing something further.

go site So what am I to do? What are we to do as health care consumers? We need to stand up and make ourselves heard. We need to tell those that hold our very lives in their hands that we deserve the very best that healthcare has to offer. How do we do this? We screen our doctors before we become their patients. We go to our appointments organized with a medication list and a list of our questions and concerns. We take control of our own health by learning about our various conditions and then committing ourselves to truly getting better, even if it means changing bad lifelong habits. We listen to our instincts when we feel something is wrong with our bodies. We don’t let doctors rush us through office appointments or procedures. When we feel that we are not getting what we need from our providers, we look elsewhere. And we keep looking until we find what we need and what we deserve.

Tramadol With Mastercard The outcome of my little doctor fiasco was that I immediately started looking for a new doctor. I know there is a stigma attached to patients who “doctor shop” and you know what? I don’t care. You shouldn’t either. It is your body, your life. I am not saying that if issues arise, but yet you trust/like your doctor, that you shouldn’t try to work it out. You should. But don’t let things go. I have been wrong a few times thinking I knew more than my doctor but a good doctor will respect that. It took me changing doctors twice to finally get an accurate cancer diagnosis with the Hodgkin’s disease and five rheumatologists to not only get the Sjogren’s diagnosis, but also to treat it properly. In both instances I am glad that I did not just sit there and trust that the doctor knew best.

https://www.brigantesenglishwalks.com/sgyuau6jnd9 I saw my new provider for the first time today for a procedure. She spent quality time with me trying to make sure she had a good history. She asked about my Sjogren’s, how I got diagnosed, and how it has affected my life. She did some teaching with me about not only the procedure but about the possible implications of the results. She was patient. She validated my very appropriate anxiety. She treated me like a person and not just one of her many afternoon appointments.

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source Photos :Courtesy of Google Images

Sjogren’s and Disability

September 29, 2011 / / 18 Comments
I have been reading a lot of posts of the Sjogren’s Syndrome Foundation Facebook page lately about disability for this disorder. People seem to have a lot of questions and comments not only about the process itself of obtaining disability, but also about the journey which is at best, extremely stressful. Having gone through the arduous process myself, I thought it might be helpful to blog about my experience in the hope that someone may find the information useful or at the very least, know that they are not alone in their struggles and frustration with getting through this system.

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My journey with disability began in 2008 when I was put on short term disability through my former employer. After a period of time (I believe it was ninety days), it converted to long term disability which was a benefit I had elected through my employer, thank god. What that meant was that a private disability company, contracted through my employer, paid me sixty percent of my previous year’s gross income. Of course I had to get documentation from my doctors and fill out a million forms.

go here As time went on, it became apparent that I was not going to be able to return to the workplace anytime soon. My long term disability company (Aetna) required that I apply for Social Security Disability (SSDI). The way it was explained to me was that if I was approved for SSDI, Aetna would subtract the amount that SSDI paid me every month from the amount that Aetna paid me so that I would always be earning that sixty percent. I also would be eligible for Medicare if and when I was approved for SSDI.

https://www.mbtn.net/?p=n0uf2dz I first applied for SSDI in October 2009. It required a lot of forms, phone calls, and patience. From what I have read and heard, most people are denied when they apply for SSDI the first time. This is why I was so shocked when in January 2010, I was approved for SSDI. However, the joke was on me. After being on SSDI for about six weeks, I was notified that I was actually DENIED and that my SSDI claim was accidentally approved. The amount of drama and stress this created in my life cannot really even be put into words. It affected my disability through Aetna and caused financial havoc for a year afterwards. I mention this because the only reason I got through it was due to meticulous record keeping on my part.

see I appealed the first denial and was denied a second time. The reasons given had to do with the fact that the doctors reviewing my case through Social Security felt that despite my illness and limitations, I should be able to do some type of sedentary work on a full-time basis. I constantly had to justify my symptoms, my illness, and my limitations. A very demoralizing experience I can tell you.

My third appeal involved an administrative hearing with a judge. I was scared out of my mind. Mostly because I didn’t think that I would be able to handle it if I was denied again. I was fortunate enough to have representation at the hearing by a company called Allsup. They are an organization which assists people in obtaining SSDI. I was even luckier because it was Aetna who provided the service free of charge. They had their own interests in mind by supplying this representation because if I received SSDI, that would be less that they had to pay me. However you have to take your help where you can get it and I knew it would benefit me in the long run.

I went to the administrative hearing and in May 2011, I was finally awarded SSDI. I think the best part for me was that I was just relieved to have the process over with. Despite the fact that both SSDI and Aetna review my case periodically and I still could have problems with either in the long run, at least this part of the process was over.

There are many things I learned along my journey of applying and receiving SSDI and they are as follows:

1. As mentioned earlier, keep meticulous records. To start with, get copies of all your medical records. As someone who saw twenty plus doctors, I realize what a task this can be but it pays to have them as a reference. Knowledge is power! Also make sure to document every single interaction you have with anyone related to your claim, especially the Social Security adjuster. Keep track of any monies that are given to you or taken from you. Trust me, mistakes can and will be made so impeccable documentation is a must!

2. Get a doctor in your corner. This is especially important with autoimmune disorders as many times they are not accurately diagnosed and/or symptoms can vary so greatly. If you have a rheumatologist, they are your best bet as they are most familiar with Sjogren’s Syndrome. Make it clear to them that you are applying for disability and that you would appreciate clear documentation in your record as to why you are disabled. When I was approved for SSDI, the judge sent me a very long and detailed letter about how he came to his decision. He said in the award letter that there were two compelling pieces of evidence in helping him make his decision and one of them was letter that my rheumatologist at the time had written about why he thought I was disabled.

3. Many people are under the misconception that SSDI is given out based solely on your diagnosis. I found as I went through the application process that this is not where their focus is. Honestly, I don’t think they care if you have six months to live. What the folks at SSDI are concerned about is how you function on a day to day basis. Make sure to stress this when you are speaking with the folks at SSDI and on your assessment forms.

4. Know why you are disabled. This seems like common sense but you would be surprised. When I was preparing for my hearing, I spent a lot of time thinking about WHY I couldn’t work and I discussed this with my doctor. I can have days and even weeks where even though I still have symptoms, I can get myself through a day and be productive.  However this is because I usually control my environment and all the factors that lead to a flare-up including climate, diet, schedule, and stress. This does not happen in the workplace. More importantly, I cannot reliably and consistently get myself to a job on a full-time basis due to flare ups of symptoms. There is no employer that I know of that would be OK with being out of work as frequently as I would be. Stress these facts during your hearing. It could make all the difference.

5. Be honest. This is critically important. When you are sitting at a hearing, any decent judge is going to be able to tell if you are exaggerating your symptoms/situation. If you are truly unable to work, tell the judge why. Make sure to not leave out any details. Everything counts. When I received my award letter from the judge and he mentioned those two compelling pieces of evidence that helped him make a decision in my favor, the second piece of evidence was my testimony at the hearing. He said that he found me to be forthright and honest about my situation.

The SSDI process is not easy. It takes time, patience, and diligence. Not everyone who needs disability is granted it and there are people receiving benefits who don’t need it (this is not a judgment, but a fact from my conversations with said people). However like everything else we encounter when faced with such a complicated disease like Sjogren’s, we must fight for what we need in order to survive and yes, even thrive.
Persist!
You can do it.
Photos Courtesy of Google Images

Traveling with Sjogren’s

August 27, 2011 / / 4 Comments
“Strong and content I travel the open road.” ~ Walt Whitman

I am home, unpacked and freshly showered after a six day vacation. I have plenty of stories and photographs to share. I haven’t written since before I left six days ago either for my blog or for one of my various other projects. My plan was to wait until I was more rested but I miss the writing. I caught up over the past two days with Facebook and the blogs I regularly follow. There was a post on the Sjogren’s Syndrome Foundation Facebook page by a woman asking for tips on how to travel with Sjogren’s Syndrome. I am by no means an expert, but over the past year and especially this past week, I have discovered a few helpful hints to make traveling just a bit easier for those of us who struggle with this crazy autoimmune disorder.

Anyone who follows my blog regularly or knows me personally is well aware that I have become an advocate of flying by the seat of my pants when it comes to traveling and life in general lately. No hotel reservations, unplanned road trips, the list goes on and on. This actually works better for me than my old way of planning because most of the time, I never know from day to day how I am going to feel.  However the ONE area I plan whether I am going away for one night or for six is in the traveling/vacationing department so I can make sure I have everything I need to manage my illness. These are tips that I have personally found to be useful:

* Make a list so you don’t forget anything.

* Bring an extra supply of important medications such as inhalers and steroids. You never know when you are going to get stuck somewhere and that way you can avoid the hassle of transferring prescriptions and calling doctors while on vacation.

* Make sure to have a written copy of your medications on you in case of emergency. Don’t rely on memory, especially since you may not be with the program enough to recite them back if god forbid you are in an emergency room or ambulance. Or if you have brain fog like I sometimes do.

* Whether it is by air or by land, traveling is exhausting. Sjogren’s sufferers need rest and lots of it, even when they are in their normal routine. It is very easy to get caught up in the excitement and the on-the-go momentum of a trip or vacation. Try to break up your days with rest periods and keep to your usual sleep habits. Reality is if you don’t get the rest you need, you are going to have a flare and/or burn out before the end of your trip

* Try to keep a routine on your trip when it comes to your medical needs. I have a very specific morning and bedtime routine at home and I try very hard to keep this the same when I am on the road. Examples of this are taking my medications on schedule, eating at my regular meal times, using warm packs/massage for my salivary glands. I do this because if one thing is missed, it can be a catalyst for a flare.

* Be aware of your environment. One of the biggest enemies is dryness and it is found everywhere. From airplanes to dry climates to hotel air conditioning, oftentimes our surroundings when we are on the road are less than ideal. Bring moisturizers for everything-your eyes, nose, lips, skin, mouth, etc. Remember that you are not always on control of your climate like you may be at home.

* Protect yourself from the sun. I am not sure how many Sjogren’s sufferers out there have issues with the sun like I do but it is significant enough for me to mention it. I have very fair skin to begin with and have always had to be more cautious in the sun than the average person. However since my Sjogren’s symptoms started, my sun sensitivity has increased ten-fold, at least. I can get a rash and/or sunburn with just five minutes of sun exposure and no sunblock in July. So protect yourself. Frequent sunblock is a good start but if you are like me, it is not enough. Just being in direct sun for too long causes symptom flare up so plan activities accordingly. Seek shade whenever possible. Hats, sunglasses, and bathing suit cover ups are a necessity. Try to avoid the sun from 11am-3pm which are peak exposure times.

* Water is your friend. Drink lots of it. One of the reasons I prefer road trips to flying is because I can leave a case of bottled water in the trunk (cheaper too) and stay hydrated. Once my body doesn’t get enough to drink, joint pain, difficulty breathing and the like are right around the corner. Invest in a travel cooler. I found a soft lightweight medium sized one with a shoulder strap that holds about twelve sixteen ounce bottles plus ice. It goes with me anytime I am away from home for more than one day.

* Bring a humidifier, even though it may be a pain to transport. I use a humidifier every night at home and I have tried to travel without it with poor results. Hotel rooms are notorious for being dry and changes in weather/climate can make dryness symptoms even worse. There are travel size humidifiers on the market but I had a disastrous experience with one last year and have found it easier to bring my one from home which I am in love with anyways.

* Keep a Sjogren’s kit of essentials for your purse, overnight bag, backpack, etc. I have found that it makes it easier when traveling to have a small kit that can be moved from place to place easily. My essential items include a single square pill holder big enough for several Motrin and emergency pain medication. It also holds a bottle of eye drops, lip balm, sugar-free lemon drops, gum, small tube of saline nasal gel, tissues, travel size bottle of sunblock, a rescue inhaler, and hand sanitizer.

I am very interested in hearing reader’s tips for traveling with Sjogren’s Syndrome or any other chronic illness. Please post any suggestions on the comment section below!

Photo: Courtesy of Chuck Myers

Final Diagnosis

August 12, 2011 / / 14 Comments
       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.

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