Tuesday, August 20, 2013

No Answers


As I have mentioned on this blog and on social media, I have been struggling with issues with my bladder on and off since last year but significantly since the second week in June of this year. Pelvic pain, especially when I void, as well as frequency and urgency. I have to say out that of all the pain I have endured in the past few years, this has been some of the worst.


As I also previously mentioned in my last entry I think, I am seeing a urologist at Lahey Clinic. I saw him the first time two weeks ago and he thought I have Interstitial Cystitis (IC), a very painful bladder disorder that can be related to Sjögren's. I was then back in his office last week seeing a nurse practitioner on an urgent basis because my symptoms were so severe. She immediately got me scheduled for a cystoscopy with hydrodistension yesterday to try and confirm the diagnosis and treat the symptoms with the hydrodistension.


So I went in yesterday for day surgery because they do this under general anesthesia. Routine for them. Not so much for me. I think I have only had anesthesia two or three other times. All other procedures have been with sedation only. I was glad to be going under general because I know how painful the procedure is but its scary once you get on that operating room table and know that you have no control over what is going to happen to you. Especially when you are going to be in a vulnerable position on the table. I wasn't concerned about the anesthesia going bad but lets face it, I tend to get weird illnesses and complications from things like this so my biggest worry was that I would get a blood clot or something like that.


Everything went well though. The staff there were amazing. I got to meet my new urologist because the original one I saw is retiring soon. I was very impressed with the handle they had on my history since none of them knew me before yesterday. There was a little glitch because a nurse came to give me heparin (I have a clotting disorder and have had blood clots) and my hematologist had told me NOT to have any blood thinners for this procedure. I told the nurse that and she got the resident right away who said that indeed, I was not to get heparin. They did give me an antibiotic and a dose of Decadron which is a steroid. I think it may have been because I have new onset asthma but I don't care what the reason was, I was happy because I have been needing steroids for a while now. I also told the nurse anesthetist that sometimes I vomit from sedation or anesthesia so they gave me a cocktail of meds before I even went in to avoid that. I'm not sure why nobody else has ever done that. Similar to how he gave me a quick tiny shot of local anesthetic before putting my IV in. They are big on comfort at this hospital. Works for me.


I was in the OR for about thirty minutes. I remember waking up sobbing and shivering, both of which had happened before and its just from coming out of the anesthesia. I guess it took longer for me to recover than anticipated and my husband was a bit worried. The doctor had come out to talk to him after surgery but then he waited an unusual amount of time to get to see me. Although I felt like I was doing OK right from the start of the recovery process, my heart rate and respiratory rate were quite low for me which is probably why they gave me more time. They gave me some pain meds and then crackers and milk afterwards and all went well from there.


Except for one thing.


They couldn't see any evidence of IC during my procedure. I mean nothing. Typically people with IC have a much smaller bladder capacity and show bleeding and ulcerations. Nope, not me. Now the doctor saw that I was getting a bit upset because who can blame me? I have had these symptoms for almost a year and things have been pretty bad lately. I also underwent an invasive procedure. From what I have read, you can still have IC with a negative procedure but its not common. I didn't get into discussing it with him because I wasn't thinking all that straight after surgery but I will discuss it more with him later. He did say that its a great thing to NOT have IC which I agree with. It is just hard not having any answers when something is so greatly affecting your life.


We decided on a follow up appointment in two weeks and he told me that we would figure this out and that did make me feel better. He also said there was a possibility that this is gyn related so this morning I worked on getting release forms sent back and forth to get records to my gynecologist so they will give me an appointment.


Meanwhile I am home sleeping off the meds and anesthesia and resting. My joints feel great. I think it is because of the Decadron they gave me yesterday. The pain I am having from before the surgery and because of the surgery is tolerable with pain meds. I expected to have MUCH more pain today since I was forewarned about that but maybe I don't because there were no ulcers or anything else wrong with my bladder. That's a good thing.


So I am almost back to square one with my honeymoon about a month away but I am just going to try and keep the faith and continue to surround myself with the love and support I have been receiving from so many people.

Friday, August 16, 2013

Authentic Thoughts And Ramblings



I am trying to be better about how frequently I blog. Typically, I put in a lot of time and thought into each blog entry rather than just writing down whatever pops into my head at the moment. It is not unusual for one blog entry to take me several hours to write and edit before I post it. The problem with this is that when things get busy for me like with medical appointments, trying to publish a book and getting married, I don't have a time block of several hours to write. What complicates this issue even more is if I need to take pain medications, like I have recently, I can't think straight enough to write at all.


So I am going to try and be more spontaneous with my writing. Not every piece I write needs to be this incredibly thought provoking piece of writing. Oftentimes thoughts and ideas just pop into my head that I would like to jot down. I usually end up doing so on my Facebook page and then I have this annoying and long status update.


My thoughts today are all over the place. I'm a bit cranky, in pain, and overall just wishing life was a little, or a lot,easier for me sometimes. I walk a fine line many times between being upbeat and optimistic and feeling sorry for myself. I think being emotionally healthy is finding the balance between the two. I know there are many, MANY wonderful things about my life and I am grateful for each and every one of them. But I also think that more often than not, I don't allow myself to just sit with the negative feelings and accept them for what they are. I guess I am just afraid that if I do that, I will spiral into a depression that will be hard to get out of. I need to have more faith in myself. Because let's be honest, having a chronic illness sucks a lot of the time. Keeping a positive attitude is critical but you also need to be authentic to whatever you are experiencing, especially when you are in pain everyday or stuck inside on a beautiful summer day, or on several days.


I do love though how when it seems like your day is just going to be dismal, how the kindness of people can ease your suffering. Like today. I had two messages from friends who were checking in on me to see how I was doing. It's helpful to be reminded that you are cared about when things feel difficult. I am certainly blessed with some amazing friends.


And then I got a phone call from the pre-op department at Lahey Clinic which is where I am having my procedure done Monday. All I can say is wow. The nurse actually thought to ask what some of my alternative medicine supplements were for and come to find out, I have to stop some of them today because of the possible risk of bleeding. And I have to stop my low dose naltrexone. My Sjögren's symptoms are going to go bonkers...ugh. But the point is, she knew what she was talking about. It's always reassuring when the people who are responsible for putting me under anesthesia know what they are talking about.


What was even more amazing is that this nurse happens to have interstitial cystitis and spent a lot of time giving me information about the diet, symptom management, etc. And, she was very upbeat and optimistic, telling me not to give up hope and I will not feel like this forever. She was very inspiring! She also told me exactly what to expect from the minute I walk in Monday until I leave. She warned me that I will likely be in a lot of pain the first forty-eight hours and to just take the pain medications. The best thing anyone can ever do for me in these situations is to tell me the truth about what to expect. God bless her.


That's all I have for today so now I am going to go check out this website the pre-op nurse told me about and pray that I will be in much better shape for my honeymoon which is in THIRTY-NINE days!

Thursday, August 15, 2013

The Vulnerability Of Being A Patient


This is a health related blog entry that is not just about Sjögren's. I say this because I know that sometimes non-Sjögren's people read the blog title or the first few sentences and decide they are not interested in the subject. I know this because well, people have told me. And for the record, I think that is awesome because I love honesty and because I frequently do the same thing when reading blogs. But this one is important because at some point in our lives most everyone, even my extremely healthy husband, has to see a doctor in this country.


We all know what the state of health care is like in this country and to be honest, I have no desire to get all editorial about that. But because I am constantly immersed in the health care system, people ask my opinion a lot and I read stories and scenarios online about other patients who find themselves in situations that they think are unique to them. So I am going to share with you all a recent scenario that happened to me and how I dealt with it. It doesn't mean that what I did was right for everyone but I want to share it because I think it is important. I wish it wasn't because frankly, I would rather not talk about my bladder but for the sake of the greater good, I will.


About a year ago, I experienced some new symptoms that strongly mimicked the symptoms of a urinary tract infection (UTI). Pelvic pain and a feeling like I had to go to the bathroom all the time. I was treated with antibiotics and my symptoms seemed to go away. Since that time I noticed these same symptoms on a few other occasions; sometimes I would be given antibiotics although looking back, I realize that I never had a positive urine for an infection. I was being treated primarily because of my symptoms and because I kept telling my different doctors that I thought I had a UTI. Sometimes the symptoms went away on their own. In the back of my head, I knew something else might be going on because things just didn't seem "right". When I went to urinate, the urine wouldn't come out as easily as it typically did and I frequently felt like I had to go even though I had just been in the bathroom ten minutes earlier. I kept mentioning this to different medical professionals but I never made a big deal about it because it always went away and when you have an autoimmune illness as complicated as mine is, you cannot possibly pay attention to every single physical symptom. You would go crazy, trust me. Plus I was dealing with other physical issues, planning a wedding, trying to get a book published, had a death in my family, and all kinds of other more important issues.


Then the second week of June 2013 came and the pelvic pain came back with a vengeance. I don't think it was a coincidence that it was right after my wedding (good stress). It would still come and go but I was really struggling on the toilet. Sometimes a trip to the bathroom made me sob it hurt so much. I had my urine tested and it was negative. I began to wonder if I had a Sjögren's related complication called interstitial cystitis. So I called my nephrologist, who is a kidney doctor, and he referred me to a urologist, a bladder doctor. It was a doctor I had heard of and he was based out of a local community hospital that I hadn't been to in years. I read some reviews online of him that seemed favorable. For the sake of avoiding a lawsuit, we will call him Dr. B (for bladder).


I was a little nervous about seeing a new doctor, especially because my symptoms waxed and waned and I had my credibility doubted in the past before I was accurately diagnosed with Sjögren's syndrome. The whole thing got off on the wrong foot because I showed up for the appointment only to find out it had been the previous day. I had been given the wrong date. I then had to wait another several weeks to get another appointment and my symptoms were worsening by the week.


I finally got to my new appointment day with Dr. B.  I registered in the lobby of the hospital where I found out they had a lot of my information wrong. I then proceeded to the clinic/office and I was actually confused where to go. There were no signs indicating I was in the right place and when I asked a staff person, I was spoken to in a sharp tone. You could tell that she was stressed. I was told to take a seat.


After waiting well past my appointment time, I had my visit with Dr. B. I am going to start by saying that when I meet a new doctor, I go into that visit with a smile on my face and a positive attitude. I feel that it is important in building a rapport with someone. My positive attitude quickly took a turn as I found myself in a head to head argument with Dr. B. several minutes into the visit. He was asking me my medical history and I told him I had my adenoids removed when I was a toddler. He then reiterated to me that I had my tonsils and adenoids removed. I corrected him and said no, just the adenoids were removed and the argument followed. As a pediatric nurse, I know that typically tonsils and adenoids are removed at the same time these days but for whatever reason, only my adenoids were removed back in 1974. He told me that wasn't possible. I asked him if he wanted to look in my throat. He declined. Remember, this is a urologist, not an ear, nose, and throat doctor.



The visit went downhill from there. He wanted to do another ultrasound as the one from a few months ago was suspicious for urinary retention. He didn't seem to hear me when I told him that the nephrologist thought that the urinary retention was from a medicine I was on at the time and no longer took. He mentioned the possibilities of Parkinson's or some other type of neurological disorder. I wasn't against this testing but I brought up the possibility of interstitial cystitis related to Sjögren's. I was again dismissed in a condescending tone and told that interstitial cystitis itself is rare, I don't fit the profile, and Sjögren's doesn't cause bladder complications. I have come to find out that cystitis can affect anywhere from 10-30% of people with Sjögren's. He never did a physical exam of any kind.The visit ended with him asking me why I was on Medicare. I'm not sure why that mattered but I told him I was disabled from Sjögren's. His response indicted to me that he did not think that having Sjögren's was a good reason to be disabled.


I sat in the waiting room in disbelief. First, I could not believe that a doctor actually got away with talking to people like that. And second, I was shocked at myself for not just getting up and leaving during the visit. Then I tried to think about my own behavior and interaction to see if part of this was my responsibility. It took me all of five minutes to realize that my behavior was extremely appropriate but it was also assertive and I knew what I was talking about. I think that may have upset this doctor. As I got my test dates and then drove home, I thought about what to do. I was very upset. I knew I was starting to get worse but I could not see myself going back to this doctor for any reason. If I started all over with a new doctor, there could be no telling how sick I might get while trying to find a new doctor and then waiting for an appointment.


I felt vulnerable. This doctor's appointment left me feeling helpless and inferior when I left the office. I am a well educated, professional nurse who has more knowledge of Sjögren's syndrome than probably most physicians in this country and yet I now questioned myself because someone had the initials M.D. after their name. I also knew that I desperately needed his help. It wasn't only that he didn't recognize or have the knowledge about my autoimmune illness, it was about the fact that he just did not care. He let his pride stand in the way of hearing me when I tried to tell him the information I read from the Sjögren's Syndrome Foundation about bladder issues. I didn't know for sure if that was the issue, but I did expect to have a reasonable conversation about it. I expected to be treated as a partner in my own health care. I expected to be treated with respect.


So what did I do? Within several hours of getting home, I decided that there was no way I could work with this doctor. I cancelled my tests and I started the process of finding another urologist which took me a very short period of time. Within three days, I had an appointment set up with a urologist at Lahey Clinic in the Boston area. Two hours from home. I made the decision to go there for several reasons; the biggest one being that they are nationally recognized for their urology program. Two more weeks I would have to wait.


Things did go from bad to worse for me in regards to my bladder issues. In those two weeks, I ended up in the emergency room with some of the worse pain I have had in my life; and that is saying a lot! But it was worth it. And I will explain why.


From the moment, and I literally mean moment, I stepped into Lahey Clinic, I was treated with the utmost respect. People would stop me in the hall (guess I was looking a little confused) and asked if they could help me get to my location. When I walked into the Urology Institute, I felt like I had stepped onto another planet. They were organized and on time. Before I saw the doctor the first time, I met with a nurse who did a urine test and a scan of my bladder afterwards to make sure I was not retaining any urine. She explained to me the entire process of what my visit would be like. She handed me two forms to fill out and guess what the first form was? An interstitial cystitis questionnaire. It was obvious to me that someone had bothered to look at the medical records I had sent over. It was obvious to me that my doctor had a clue about autoimmune issues.


The doctor I met with truly listened to me and we came up with a plan together. He told me he suspected that I had interstitial cystitis (IC) . Within a few days of my visit, I went downhill even further and talked to an on-call doctor on a Saturday who helped me figure out a medication plan to get me through the weekend.  When I called the office back on Tuesday, a receptionist listened to me explain my situation and got me an appointment for the next day with one of the nurse practitioners. Again I was listened to, we explored all the options, and it was decided that my procedure/OR date should be moved up. My appointment was a Wednesday and I was scheduled for the OR on Monday for a cystoscopy with hydrodistension to evaluate and treat for possible IC. While I was at the hospital for this appointment, they had me do my preoperative registration and blood work that same day since I lived so far away. Most importantly, I was treated with respect. That is excellent medical care.


So what is my point in telling you this huge and drawn out story? Well, we all must decide for ourselves what we are willing to put up with and what we are not. We must also weigh the risks and benefits of every medical situation. That being said, it is NEVER acceptable to be treated by a medical professional in a way that is demeaning, rude, or uncomfortable. It doesn't matter what your medical issue is and it doesn't matter how much pain you are in. It doesn't matter if the doctor does not like you and it doesn't matter if he is having a bad day. Doctors have bad days just like the rest of us however they are also professionals. And you are the patient. Just being a patient makes you vulnerable when you step across their threshold. I am not saying to dismiss someone because they disagree with you (I have certainly had my share of disagreements with doctors) but you should never feel disrespected and you should certainly never leave an office in tears because of a medical professional. You deserve better. We all do.


We often hear and see online and in the media about healthy relationships versus dysfunctional ones. We hear about abusive spouses and toxic friends. We learn about what is acceptable behavior and what is not. We teach our children about bullying. But what about the very people who sometimes literally hold our lives and well being in their hands? Shouldn't they be held to the same standards? Í am not saying that all doctors are rude, inappropriate, or bullies. I, in fact, have seven who are none of those things and are some of the best doctors out there. So if you encounter a situation like this, know that there are not alone, know that you deserve better, and don't quit until you get what you need.



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I know that I am fortunate. My experiences took place in a state where the eastern side of the state, two hours away from me, is riddled with some of the top hospitals and doctors in the country. I have never lived anywhere else besides western Massachusetts but I do understand that access to better care may not be as easy for some of you as it was for me. I would be interested in hearing your thoughts and stories regarding that or in regards to anything discussed in this essay.

Sunday, August 11, 2013

Tales From The Dry Side Publishing Process Has Begun!



All kinds of exciting things are happening around here. I started the publishing process for Tales From the Dry Side with Outskirts Press this week and we are full steam ahead. I have been working with my author representative, Terri, and she anticipates the book will be published in seven-ten weeks. This week I submitted the manuscript, cover photo, author photo, and wrote the back cover text. The process has been going well and Terri has spent a lot of time with me so far on the phone and via e-mail educating me on the specifics of self-publishing. I enjoy the flexibility that this publishing company is giving me in regards to every detail of the book, including the entire interior design, right down to the font type and size. Over the next few days I will be working on choosing the specifics of the interior book design.



The manuscript was read this past week by a manuscript review team. They checked the content for numerous things such as any potential legal issues and they approved the manuscript for publication. I also had a discussion with Terri about obtaining contributor release forms which is quite a task as there are twelve other writing contributors and one photographer contributor. Anyways, the manuscript review team sent me an e-mail complimenting me on the manuscript. I realized that this was only the second time that someone besides myself had read the manuscript. The first person was the CEO of the Sjögren's Syndrome Foundation. The feedback they sent me was as follows:



"This is an amazing collection of stories. I have to be honest. Before reading your book I had not heard of Sjögren's Syndrome. I love these stories of perseverance and determination to live a life that is as normal as humanly possible. So many healthy people live life without stopping to smell the roses. I love the zest for life each person shares with the reader. It is obvious that you have done your homework with this book. It is well planned and carefully written. The manner in which each person shares and writes is wonderful. Each story has a narrative voice that is friendly and familiar and warm. You never talk at your reader but share life experiences leaving the reader with a better understanding for the adversity that some people face. I love reading other peoples stories. You remind your readers to become reconnected with themselves. I loved that in many of the stories the illness made them get off the merry-go-round of life and to live a life that is more fulfilling for them. Sometimes you have to face something difficult to see how beautiful something truly is. I read a quote somewhere that simply stated that all we have is now. You and your contributors write with a genuineness that is hard to find in the written word. With all of that being said, I must say that you have put together a fantastic resource here. You have really considered your audience in your writing by adding details and adding a voice that leaves you feeling like we just chatted over coffee. You do not preach but rather share. You have crafted an excellent piece here; one that should be well received by a wide audience. Bravo on a piece well crafted!"


I have to say, I was very relieved to read this!


So the hard work continues. Every day is a learning experience during this process. Thank you all again for your donations, support, and love. When I was speaking with my author representative this week, she was very impressed with the fact that I funded this book with a successful Kickstarter campaign as she knows many have tried to fund self-published books via this way and have not succeeded. That is because of all of you. God bless you.