Friday, July 11, 2014
It has taken me longer to write and post this blog entry than I anticipated. I have been having a lot of trouble the past few weeks with joint pain, mostly in my hands and feet, and it has made time on the keyboard more difficult than I would like. My rheumatologist wants me back on prednisone. I think it is the result of an unusual amount of stress, coupled with my diet being less than stellar (I tend to be a terrible eater when I am upset/stressed, depending on the severity of the situation), and the hormone changes from having my Mirena removed less than two weeks ago. I am giving myself a few days to try and get myself straightened out before jumping on the prednisone bandwagon.
Anyways, I got a call this week from my genetic counselor with my BRCA test results and they were negative! Waiting for the results for almost three weeks was even more difficult than I had imagined. Someone asked me this week why I thought that this particular medical issue was more difficult than so many of the other challenges I have faced medically. I really had to think long and hard about that...
I was able to figure out that it freaked me out so much for a variety of reasons. To start with, someone close to me got a very bad medical diagnosis twenty-four hours before I was BRCA tested. Also, I am a cancer survivor and anything cancer related to me has a tendency to freak me out a bit. Lastly, I KNEW that if I was BRCA positive, I would be going for surgery to have my ovaries removed and most likely, a bilateral mastectomy as well. I would not have had the testing done if I had not already thought that through and made those tentative decisions. So the idea of two major surgeries, in addition to my often precarious health status, panicked me. Just the blood clotting disorder itself was going to be a major issue. All very valid reasons to be concerned.
I am over-the-moon thrilled about this negative result, even if it does still leave some unanswered questions. My mother, who has had ovarian and breast cancer, was never BRCA tested (long story). Now if she is BRCA negative, or even if we don't know her status, there is still a possibility that she is carrying a gene that contributed to her cancer that I was not tested for. The problem is, these non-BRCA genes are not as well understood and neither are the implications of them being positive. If my mother WAS BRCA positive, with me now being negative, then the story has ended. We would know that her cancer was caused my the BRCA gene and I no longer need to worry about this issue. Keep in mind that there still remains the possibility of her cancers NOT being genetically linked either.
Confusing as hell, isn't it?
You should hear me trying to explain this to my mother!
I had this discussion with my mom and we decided that, especially now that I am negative, she will consider gene testing. My genetic counselor suggested that she explain everything to her doctor, and consider other gene testing besides BRCA depending on whether it is covered by her insurance and if she wants to do it. Typically, the person with cancer undergoes genetic testing first. We did things a bit backwards, but it is what worked at the time for the both of us. There is a big difference in my mother getting tested now, knowing that there is no way she passed this BRCA gene down to me.
She is going to follow-up with her doctor in the fall when she has another appointment, but for me, I am done with all of this for now. The genetic counselor I met with does not feel that there is a strong possibility for any of these other genes; at least that is the impression that I got and I am not willing to shell out $4000 or so (my $2500 BRCA test was covered by the lab) to find out about these other genes when they are so poorly understood, and when I don't have all the information yet from my mother. I am still planning on following up with the oncologist because it has been pointed out to me that with my mom's history and with my chest radiation history, more should be done with breast surveillance, especially in regards to breast MRIs. I will also discuss with him the value of having ultrasounds and blood tests (CA-125) done for ovarian cancer.
I have learned a lot from this entire process. While I was waiting for my BRCA results, I got connected online with some women who are BRCA positive, and some women who have had the two surgeries. They were a wealth of information and I am in awe of the strength of the human spirit after what all these women are going through and will continue to go through.
For me, I am grateful that even though I am on a difficult medical journey every single day, that this piece will not be a part of that journey. My husband and I had not even made any plans for a few things we wanted to do this year and next, until we knew what the outcome was going to be. I now don't have to worry about not being able to work my new job, once school restarts in the fall. I can breathe a little easier and be more appreciative for this blessing that I have been given.
Wednesday, July 2, 2014
Sometimes a topic comes up that I am somewhat uncomfortable throwing out into the world wide web community, and this is one of them. However, I had to go in for a minor office procedure two days ago and I was extremely nervous about what to expect. A Google search of some other blogs gave me information that helped me quite a bit, and reminded me of the importance of blogging and why I write what I write.
On Monday, the very same day that the Supreme Court of the United States of America granted a for-profit company permission to withhold financial coverage for certain types of birth control from its female employees (including IUDs), I had my IUD removed.
That was a total coincidence.
Here's the thing though. This blog is not about that decision because honestly, I want this blog entry to be more helpful than that. We all have our opinions about the case and trust me, mine is strong. But this blog is about women and the choices they make. The choices that impact their lives, their partner's lives, and the children they may or may not have. So here is my story...
During my college years, I was put on birth control pills after I suffered through a ruptured ovarian cyst. It was not my first cyst and because of the rupture, I lost critical days of clinical experience during nursing school. Once I went on the pill, the cyst situation improved dramatically. I was not sexually active at the time I went on the pill, and never had been at that point. However once I was, I found the birth control pill to be a great piece of mind, as condoms are not exactly known to be foolproof.
I tried different types of birth control pills over the years as I had suffered from the side effects that many women deal with in the name of acting responsible. I stayed on it for years and years until I came off of it during my first marriage for a brief, and I mean VERY brief, attempt at becoming pregnant. I was back on it two months later. That's a story for another day.
In 2004, while in this marriage, I experienced a blood clot in my leg. I underwent testing and was found to have a genetic clotting disorder called Factor V Leiden. At the time I developed the blood clot, I was dealing with a medical issue and was spending a lot of time in bed. The hormones in the pill were thought to be an aggravating factor in the development of the blood clot. The trifecta of the Factor V Leiden, being immobile, and the hormones in the pill almost caused me a death sentence. I was banned from birth control pills for the rest of my life, as well as all hormonal forms of birth control such as DepoProvera, etc.
So condoms it was.
That was fun.
Years went on and in 2008, I left and subsequently divorced my husband. At this time I was also dealing with a raging autoimmune disorder that left me disabled and I felt strongly that I needed to further push the birth control issue as being single, relying on condoms if I were to have a new partner, and having this many health issues was a very bad combination. And frankly, irresponsible as well. The issue was made more complex by the fact that my fertility was in question anyways due to Polycystic Ovarian Syndrome, so who even knows if I needed birth control. But since I hadn't undergone testing fertility testing, I was playing it safe.
I spoke with my hematologist and gynecologist at length and I was presented with the option to have an IUD. I had two choices: a copper Paraguard IUD or a hormonal Mirena IUD. The suggestion was made that the Mirena might be better for me as the ParaGuard was known for causing heavier periods and I already battled that most of my life, but the Mirena can also cause ovarian cysts. I questioned the use of hormone (progestin) in the Mirena due to my clotting disorder. It was explained to me that because of the type of hormone and the location of the hormone in the uterus, rather than in my entire system, that it would not be an issue. The Mirena IUD had become the birth control method recommended to women with Factor V Leiden, as studies had shown that it did not cause an increased incidence of blood clots.
So in August 2009, I had the IUD placed. I was not thrilled about the idea of having something foreign put into my body, by my options were so limited. I was forewarned that insertion can be more difficult for women who have never been pregnant/given birth, but this was something I read online. I figured maybe some women exaggerated how bad the pain was. My (male) gynecologist at the time said it would just be like period cramps.
I no longer see that doctor.
It was bad.
I have never given birth, but I would have to say that the pain was probably comparable, just much shorter in duration. I have been through a lot of medical procedures, many of them unpleasant, and this ranks in the top three of most painful procedures. Then there was a lot of dizziness, I threw up while on the table, and my doctor told me I would be OK to drive home. I got twenty minutes into my drive and had to pull over because I thought I was going to pass out from the pain. I eventually made the last ten minutes of the drive home and loaded up on Percocet that I had left over from an ER visit months before.
The severe pain continued for two straight weeks and that was how long I was on Percocet. It took about two full months for me to get back to normal and then I was fine. I had called the doctor several times during this period because I was concerned that something was wrong with the IUD, but I was told that it just doesn't agree with my body and that it will get better, which it did. I don't want to scare women out of getting an IUD, but let me tell you, knowledge is power, Be prepared and don't take the word of a male physician on how it feels to have a T-shaped object inserted into your uterus when nothing else has ever been placed in your uterus before. Ask for a medication to take beforehand and have someone drive you. My experience may not be typical, but better safe than sorry.
Life after that with the IUD was OK for the most part. I would get paranoid that I couldn't find the strings which indicated if the IUD was in place. I did get a few cysts over the years, which I probably would have gotten anyways. My periods ceased. I never had to buy tampons. And when I entered my first post-divorce relationship, I was relieved to have it. At one point I was taking a very toxic autoimmune medication with a black box warning and was told that I could not risk, under any circumstances, getting pregnant. No problem. IUD in place.
As I mentioned, I was never really comfortable with the idea of having a device in me like that and this became more of an issue for me after a conversation with my acupuncturist when I started seeing him the first time around. The menstrual cycle is a big component in Chinese medicine, especially in relation to blood flow and energy. He never pushed me on the issue, because he is such a good practitioner, but he suggested I consider having it removed so that the work I was doing in acupuncture could be more effective for my autoimmune symptoms. Again, my options were limited, so in place it stayed.
Fast forward to 2013. I begin to have a lot of problems with my cycle.The Mirena has now been in place for almost four years. I originally thought it was stress related due to our wedding, but by the end of the year, the wedding was done and the cycles worsened. I spoke to my nurse practitioner, who I trust implicitly, and she told me since my Mirena was due to come out in August 2014, the symptoms were likely related to the fluctuations of hormones that the Mirena was producing.
I go from never having a period to having several a month. YES, SEVERAL A MONTH! Two words for that: raging bitch. Actually, that would be a bit extreme, but the hormone fluctuations were causing bad mood swings (mostly depression), bloating, cramping, you know, the usual. Plus, this made me concerned about the Mirena's efficacy. If the hormone levels in the Mirena were changing that much to cause these symptoms, was there enough progestin in that sucker to do what it is supposed to do? I am 43 years old and I have several medical issues that would likely make a pregnancy life-threatening for me, not to mention threatening to an unborn child.
So this has left my husband and I with lots to talk about. The plan was to get through my BRCA testing because if that ended up being positive, I knew I would have my ovaries removed and it would be a resolved issue. I have not received those results and birth control is still an open discussion. However we both agreed that for right here, right now, it is not physically OK for me to have this current IUD in place, especially since the more hormone fluctuations I have, the worse my autoimmune symptoms get.
For women, especially women with health complications like me, there are no easy answers. However I am fortunate enough to have a supportive husband and an excellent health care practitioner. Yesterday, after days of major fear and anxiety, I had the IUD removed. This was the Google topic I was referring to at the beginning of this post. I was petrified to have this thing taken out after my harrowing insertion experience. But it went OK. I thought to take some pain medication AND Motrin beforehand. It was painful coming out (they are taking something out of your uterus after all), but it was so quick that I barely had time to react. I did have cramping on the way home and Motrin later on in the evening, but by the next morning, I was out for a run.
The aftermath of the removal has been as expected. My body and hormones have been altered for the past five years so all those periods I didn't get the first four years? Yeah, they were getting saved up for now apparently. It sucks, but I am confident that in a few weeks or months, it will all even out. I'm sure my acupuncturist will be thrilled when I go in tomorrow and I am confident that she can do something to help get me through the next few weeks.
So with all this talk about women's rights, court decisions, and birth control, at the same time that I have gone through this process this week, it has made me think about the Mirena and if I think it is a good form of birth control. If you Google search "Mirena complications", you will be blown away by the lawsuits and issues that women have had with this form of contraception. You will see stories of women who love it. You will even read about how evangelical Christians think that using an IUD is abortion (for the record, based on the evidence, I do not). I will be honest, I LOVE the fact that this foreign piece of material is no longer in my body. I am even psyched that I have to go buy tampons for the first time in God knows how long, because it means that my body is doing what it is supposed to do. Even though I had the IUD placed AFTER I first experienced autoimmune symptoms, I am curious to see if anything with my health improves.
For a period of time, for me, the Mirena was the right choice. Besides never having sex, it was the only choice. I think it is easy for all of us to sit in judgment over each other and the choices we make, but we truly know little about the fine details and the decision making process that a woman must go through in regards to her health.
It is, after all, her body.
Saturday, June 21, 2014
What would you do if you had an opportunity to learn a piece of medical information about yourself that years ago, was not even an option? What if that information told you that in your lifetime, you had a high likelihood, or even a possibility, or having a certain type(s) of cancer? And finally, what if knowing that information required that you make life-altering decisions about what to physically do with your body?
This is the case for many women who are faced with the question of whether or not to undergo BRCA testing. The BRCA 1 and BRCA 2 genes are genes that we are all born with. If there is a mutation in either one of these genes, it indicates a condition called Hereditary Breast and Ovarian Cancer (HBOC) syndrome. This is a condition that is genetic and is acquired through birth, when the mutation is passed down from either parent; it does NOT have to come from the mother. If a person tests positive for this mutation, it substantially increases their risk for breast cancer, ovarian cancer, and in certain families, pancreatic cancer. Males with the mutation are at a higher risk for male breast cancer and prostate cancer.
Now, only about 5-10% of cancers are genetically related, however I have a mother who was diagnosed with Stage 2 ovarian cancer at age 44 and then breast cancer at age 62. She had an aunt who had breast cancer. Genetically related cancers tend to be diagnosed at a younger age, under the age of 50. We know that mammograms and self breast exams are very useful in detecting breast cancer, but ovarian cancer has been called the "silent killer" because it often does not produce symptoms until the disease has progressed. My mother was lucky; she went to her annual exam, was found to have what was thought to be problematic fibroids, and subsequently underwent surgery for those fibroids.
Except, they were not fibroids. They were tumors. She proceeded to have a total hysterectomy at the age of 44. She survived that, with surgery and chemotherapy, and then also survived her breast cancer diagnosis, which was treated with a lumpectomy and radiation.
When I was in my late 20's, my oncologist (I had Hodgkin's Lymphoma when I was 24) suggested genetic testing/counseling for the BRCA gene. I went to the counseling, had the crap scared out of me, and decided not to have the testing at the time. I didn't want to know that kind of information (the statistics for BRCA positive women are staggering), and I knew that if I tested positive, I would not have the recommended surgery because I wanted to have children. The recommended surgery for BRCA positive women is to have the ovaries removed. Total mastectomy for the breasts. The option to surgery is increased surveillance of the breast with mammograms and MRI's every six months. For the ovaries, there is no proven detection method, although sometimes a blood test and ultrasound can help.
Down the road, I was in my late 30's when my mom was diagnosed with breast cancer. I clearly remember her oncologist looking me straight in the eye and telling me I should have the BRCA testing done because of my risk. It still was not the right time.
Now I am 43 years old. And this risk for ovarian cancer thing has been weighing heavy on my mind since last year, probably because I am almost at the age my mom was when she was diagnosed. Actually, it has been on my mind since that first genetic counseling appointment all those years ago. Although I have been getting regular mammograms for quite some time now, due to my chest radiation history because of the Hodgkin's, there is no reliable testing for ovarian cancer, with the CA-125 blood test and transvaginal ultrasounds being hit or miss at best.
So all of this brought me to my regular gynecologist who then referred me to a local oncologist and finally an appointment was set up with a genetic counselor from Massachusetts General Hospital (MGH). My oncologist is located at Cooley Dickinson Hospital in Northampton, MA, which is a small community hospital, and they are affiliated with MGH, which has a comprehensive genetic program. I had to wait months for the appointment and then I got an unexpected call two weeks ago that there was a cancellation last week, which moved my appointment up by a full month. I took it.
My husband went with me to the appointment last Thursday and we met with my genetic counselor, Michelle. She was absolutely fantastic. She took a detailed family history and confirmed that yes, having BRCA testing done was indicated. What I didn't expect her to say was that there were other genes I should probably consider testing for as well, including the p53 gene and the p16 gene. Folks, I will be honest. I am a nurse and I didn't even know there WERE other genes! The p53 gene was because of the history of leukemia/lymphoma in my family. I have already had lymphoma, but I would know if I was then also susceptible to sarcoma, breast cancer, brain tumors, and about six other cancers.
The p16 gene was suggested because my dad has had melanoma and my uncle (his brother) died of pancreatic cancer, both of which can be correlated to this gene mutation. Here's the problem though, if you find out you DO have these other two genes, there's not much you can do about it, except that you are aware of it and your doctors can be more alert to changes with you. Some doctors will suggest routine endoscopic ultrasounds and MRI's for the pancreatic cancer and skin checks by a dermatologist for melanoma, but it's not like you can remove your pancreas or anything. These two tests would be included in what is called a multi-gene cancer panel, which tests for all the genes known to have a cancer connection.
And my insurance, Medicare, does not cover ANY genetic testing for me because it is considered preventative.
Michelle also told us that this gene testing list is constantly changing as new genes are being discovered. She did not seem to feel that the risk for me with all these other genes was high. I did not feel that at this time, it was information I wanted. Yes, I wanted to know my BRCA status, mostly because of the higher risk, but also because I can concretely do something about if it comes back positive. She also told me I didn't have to decide that day; the option would always be there if I changed my mind. On that day, it was too much, both emotionally and financially, and I opted out.
The good news is, there used to only be one lab that ran these BRCA tests, Myriad. Michelle told us that they no longer are the sole owners of the patent, and that other labs are now doing the testing as well. The cost for us, as it would not be covered by my insurance, would be $2500. However because these labs are now in competition with each other and want your business, they will oftentimes run it for free for a person if not covered by insurance, minus $100. That decision will be made probably within the next week. They will start running the test, and if for some reason are not going to cover the cost, they are mandated to call me and ask me if I want them to continue running the test (which we have decided will happen) as a self-pay, or stop the test. If they are NOT going to cover it and do not notify me by phone, they must pay the cost of the test. Michelle felt that most likely, it would be covered, so now we wait to see if the phone rings...
While talking with Michelle, I almost changed my mind even about the BRCA testing. It is quite a complicated thing, this BRCA business. For example, for her own personal reasons, my mother has decided NOT to get tested, so we don't know her status. If I end up being positive, it looks likely that is came from that side of the family because of her cancers, but we don't know for certain. If I come back negative, it doesn't mean our family does not have the BRCA gene, because I could have gotten lucky and been in the 50% that don't inherit it.
Here's the part that almost changed my mind: If I come back positive, it means that we now know BRCA runs in our family. This means that my parents, brother, aunts, uncles, and cousins on the side of the family it came from, ALL have a 50% chance of inheriting this faulty gene.
When this dawned on me, I clarified this with Michelle, looked at Chuck, and we both realized the same thing, at the same moment: my getting BRCA testing with a positive result would mean that all my family members would have this knowledge, whether they wanted it or not.
I have to say, that was one of the worst feelings in the world, ever. And of course, I started to cry.
This is the type of thing that can really mess with your head.
As we talked more with Michelle, I began to realize that this is not my fault. It is not my mother's fault. It is not her parent''s fault. It is NOBODY'S fault! This gene has been around forever, literally. Yes, now we have the technology to know these things and be more proactive which raises up the question of how much knowledge is too much?
I came to the conclusion during this appointment that for me, I need to have this BRCA information, not just on an emotional level, but for the sake of my survival. It is not very common for a woman, like my mother, to get ovarian AND breast cancer in her lifetime, especially at a younger age. The general population has approximately a 1-2% risk of getting ovarian cancer in their lifetime. A person who is BRCA positive has up to a 60% chance of ovarian cancer...a cancer that is typically detected AFTER it is too late. The general population has approximately a 10% chance of breast cancer in their lifetime. My previous radiation history already increases that risk. A woman who is BRCA positive has up to an 87% risk. Those are numbers that I cannot ignore, especially after having already faced cancer once in my lifetime.
The questions that BRCA presents are complicated and messy with no right or wrong answers. The only answers are the ones that are right for the individual, at that particular time in their life. So the best we can do, is get educated, make informed decisions, and pray for the best outcome.
Wednesday, June 18, 2014
My entire life I have have either wanted to be a nurse or have been a nurse. I don't remember the exact time and place of when it became so apparent to me that this is one of the things I wanted to do with the rest of my life, but I do remember the desire being there from an early age. My mom is a registered nurse (RN) so from as far back as my toddler days, it was ingrained in me what a noble and worthy calling this profession is.
I graduated from UMASS Amherst in 1993 with my BSN and proceeded to work several different nursing jobs over the course of the next fifteen years. I worked on an inpatient adult psychiatric unit, I worked for a home care agency jumping around from the psychiatric specialty to adult medical surgical, and then finally, into maternal child health. My dream job came though in 1999 when I began working as a pediatric nurse at a children's hospital. I would stay there for ten years, working on the same unit, day in and day out.
My last day of work there was November 8, 2008 and I was officially "let go" in March 2009. I use the term "let go" because I don't know what else to call it. I wasn't fired as I had done nothing wrong; I was an excellent nurse. I didn't quit either. However, my autoimmune battle had been going on for over a year. I had used up all my sick and vacation time. I was on short-term disability, but since I had used up my allotted FMLA leave, which in Connecticut is a generous sixteen weeks, my job was no longer legally protected. So if you don't think it can happen to you, trust me, it can. No job and no health insurance. I was fortunate to be making sixty percent of my income on short-term disability. When I asked if they could hold my spot at the hospital, I was told they could not because my position as an admission nurse needed to be filled to provide optimal patient care. I could reapply for a job in the future, but I would start all over as a new employee and I would lose my ten years of seniority in regards to my pay scale, etc. I found out later that my position was never filled.
Over the course of the next several years of battling Sjögren's syndrome, I could not work at all, nevermind as an RN. I was devastated in 2010 when, while being evaluated for SSDI, a medical professional told me I would likely never work as an RN ever again.
But as you all know, my life was not over. I became a writer and even though until very recently, I was not earning any income from it, it felt like a calling to me; in a different way from being a nurse. But, I always missed nursing. I didn't miss working the 36-40 hours/week as I knew my body could not withstand that type of physical activity, no matter in what capacity. However as I started to learn ways to cope with my illness and as I found different alternative treatments to help manage my symptoms, I couldn't help but wonder if someday, I could go back to doing some type of nursing again.
Around 2012, I started seriously investigating different types of nursing jobs and what kind of schedule I might be able to work once I was physically able to do so. I pretty much came to the conclusion that due to the unpredictability of my illness, working any type of set schedule would be impossible. Hence, partly why I was deemed permanently disabled by the government. But, I came to the conclusion that I was never going to let this be permanent. I was going to work someday, somehow, as a nurse again.
Between 2012-2014, I continued to work hard on getting some of my symptoms under control and by the end of 2013, I had made a decision that trying to find a job as a substitute school nurse may be the best path for me to take. I had never worked as a school nurse before and since the day I graduated nursing school, I have always wanted to. However back then, I needed the pediatric experience and then once I got that, due to personal circumstances, I found it impossible to leave my hospital salary for one of a school nurse. Now though, my situation was completely different and I had learned the hard way the importance of choosing happiness over money.
I started scouting local job postings with the intention of applying for a job starting in the fall of 2014. However with all the hoopla of Tales from the Dry Side being published and all the marketing I had to do, it made me realize that I was ready now to embark on this challenge. I was physically ready to take on the responsibility, or at least try. I had also been scouting local school websites because I was looking for a smaller school district. It had been 5 1/2 years since I had worked and I didn't want to overwhelm myself, especially since stress is the fastest way to aggravate my symptoms.
I came across the website for a small town adjacent to the one I live in and it said they were always accepting applicants for sub nurses. It was interesting that I found this the same day that I was going to apply at two other school systems. I called, spoke with the nurse leader, and scheduled an interview.
I never sent in my applications to the other two school districts.
I knew within five minutes of my interview that this was the place for me. I cannot quite put my finger on it, but I loved my supervisor and I met one of the school nurses, who happened to be a former co-worker of mine from my former home care days. Seemed like it was meant to be I guess you could say. I was hired and finally employed after 5/12 long years.
I had three days of orientation, working in each school with the regular nurse. After that, my schedule varied. Although I am a sub, I often get pre-scheduled for days when I don't have medical appointments, etc. I probably average about three-five days a month between the three schools and that is perfectly acceptable to me. Once in a while I will get a last minute call to come in and work, just as any other substitute does. I have learned to start scheduling my medical appointment first thing in the morning or late in the afternoon so that i can be more available for these last minute calls, but it is still a work in progress.
Going back to work has been one of the best things I have ever done for my illness. It has also been one of the hardest. The rumors about a school nurse job being easy are completely untrue. They work hard. I work hard. First off, as I mentioned, I have never been a school nurse and it is a completely different animal than any other type of nursing. My acute care experience has been a huge asset to me and I was surprised, after so much time, how easily it came back to me. However your approach is very different. These are not sick kids coming onto your turf so to speak. They are relatively healthy kids and you are in their environment. Granted, there are some kids with chronic illnesses that have special needs, but still, it is very different.
The change in nursing specialties has meant a lot of time online researching situations that I am not as familiar with. It has been a big learning curve for me and with that, has come some stress and anxiety. Trying to retain all this new information and learning the ropes for three different schools in a short amount of time is exhausting when you already experience unusual fatigue on a daily basis, as well as pain, issues with your eyes, etc. My days at work are very unpredictable. Sometimes I feel like I am running a walk-in clinic or a little mini-emergency room and I need to be on my game. There have been days where I have woken up and checked in with myself because of how lousy I feel. The question I have to ask is: will this just be very hard for me or will I not be a good nurse today? So far the answer has always been: it will just be very hard for me. I have continued to be the incredible nurse I have always been, disability and all.
So how do I do it? How do I move past the pain, fatigue, eye issues, organ complications, etc. to physically get through a 6 1/2-7 hour day? Well to start with, I am a substitute. Going back to work has made me realize that although I am striving for a goal of being able to regularly work part-time, I don't ever see myself working full-time. It takes a lot of preparation and recovery for me to work one or two days in a week and I do look forward to the weeks where I don't work at all because my body needs a break. Besides medical appointments, nothing else gets scheduled during the week, and sometimes that even includes weekends, if I know that I will be working. I always make sure that I have appropriate lunch foods ready to go in the fridge and clothes ironed in my closet in case I get called. I have gotten myself on a regular sleep schedule of 10pm-6am, which actually has done a lot for my insomnia.
Since I usually have a heads up for when I am going to work, I do nothing but rest most of the day before and it usually takes me one-two days to recover. It has meant missing out on some social activities, especially in the evening. If I happen to work back to back days, which does happen from time to time, my whole week is devoted to just work, making meals, and rest. I keep waiting for it to get easier for me physically. Stress wise, it has gotten much easier since I am now comfortable with each school, and have started to get to know the kids and how things work. But the physical aspect is a whole different story. I do not exaggerate when I say that I typically come home from work, let the dog out, change my clothes, go to the bathroom, and collapse into my bed for the rest of the day. I always have dinner prepared in advance or my husband knows he is in charge of dinner that night.
I also am able to work because I have a strong support system. My fellow nurses are such a great group of people, my supervisor is incredibly supportive, and I feel like it is a team environment. I have friends and family who keep cheering me in, especially in that first month when I was trying to get my body to adjust to being out in the workforce again after so many years away. I have this fantastic husband who rubs all my aching joints, makes sure we have clean underwear during weeks that exhaust me, serves me supper in bed, and tells me how proud he is of me. It all truly does make a difference.
I think probably the most important factor in how I get through my work days and why I keep working is this one simple fact: I absolutely love my job. Like head-over-heels love my job. I remember the first time I walked into the elementary school for my interview (I have never had kids in school!), looked around, and felt like a school was the best place in the world to be. So much learning, so much potential, so much LIFE! I love working with kids in a school environment; so many challenges and ever-evolving. I enjoy the different challenges in caring for a kindergartner versus a senior high school student. I love being able to help them manage their medical needs in order to maximize their learning potential. I love soothing a scared child. I love the one on one interactions that so often got neglected when working in the hospital. I enjoy the unpredictability of my day. I love knowing that I make a difference.
This job has ended up being so much more for me than a once a week or so obligation. It has been a chance for me to care for children again, to use my brain and my analytical skills, to be a part of the rhythm of life again.
My last day of work this school year was yesterday, approximately four months after I started. I know I don't work forty hours a week, but I made it to the end of the school year without one sick day, although yesterday was a very close call! I am proud of that fact. For me, it is an indicator of how far I have come and the potential for how far I may be able to go.
So, happy summer to all!
Saturday, May 31, 2014
I am getting my stuff together for tomorrow morning's 5K race, and it dawned on me that I never did a race report from our big weekend last week. I kept meaning to, but it was a hectic week as our kitchen is in the process of being remodeled, we are trying to get ready for a graduation party next weekend, and I was feeling lousy and ended up being treated for a sinus infection. Craziness!
So last weekend was something my husband and I had been looking forward to since last year. I found out about the 2014 Boston's Run To Remember,which is a race held every year in honor of fallen law enforcement officers, when searching for races on the internet. The proceeds from the run go to a charity and this year monies were being given to youth programs in Boston. There were two events, the half-marathon and the 5 miler. We decided to do the 5-miler because at this point, that would be my second longest distance ever run.
Because the event fell the weekend after our anniversary and we live almost two hours away, we decided to reserve a room at the Park Plaza in Boston for the night and go to one of my favorite restaurants, The Barking Crab, for dinner on Saturday, as the race was on Sunday. We left for Boston Saturday morning and stopped at Castle Island in South Boston. It's a neat place. There is a fort and a walking trail (HarborWalk I think it is called), as well as a park. My favorite thing to do there was stand on the edge of the harbor and watch the planes fly in and out of Logan Airport.
We checked into our hotel and decided to walk the 1.8 miles to the Seaport World Trade Center which is where the race expo was being held. I am not sure how much I mention this on my blog, but I am obsessively in love with Boston; always have been and always will be. My dream is to someday rent/own a condo in Bay Village and live there for at least a year. That is why we walked to the World Trade Center, instead of taking the subway. It was a beautiful day and the walk brought us through several different neighborhoods in Boston.
I had not been to the Seaport district before, despite our many trips to the city and I loved it. Anytime you can stand in a city and smell the ocean, it's all good by me! This was our first running/fitness expo and I was pretty psyched for it. There were a lot of different products and I was excited to see my favorite headband company, Bondi Bands, selling their stuff. We also left there with some new chia energy bars and a pair of running sunglasses that I have been looking for. I enjoyed the different displays they had up listing the names of all the fallen officers in the entire state of Massachusetts, as that was the real reason we were there. We also picked up our bib numbers, race packet, and t-shirts. I have heard other people say that as far as running expos go, it wasn't the best, or the biggest, but I have nothing to compare it to, so it was fun for me.
We then made our way next door to the restaurant, Whiskey Priest, and enjoyed a drink on their outside deck, overlooking the harbor. Then we walked back to our hotel. Of course by this point, I realized that my feet hurt from walking about five miles that day, which I said I was NOT going to do and by the time we were ready to leave for dinner at the Barking Crab, I could barely walk. Did I mention that I was supposed to run five miles that next morning?!? So, a cab it was! Dinner was great, as expected, and then back to the hotel we went.
The race was scheduled to start at 7am the next morning. Because of increased security measures and screening due to the Boston Marathon bombing last year, we decided to leave the hotel at 5:30am, which meant a wake-up call for me at 4:30am in order to get all my morning medical stuff done and so I could do some trigger release work on my legs before the race. We took a cab to the World Trade Center because the subway's red line did not run that early on Sundays and we thought it best not to walk there. We did get there much too early (5:45am) and we breezed right through security. I think for next year, getting there for 6-6:15am will suffice, as that was right before the crowds started rolling in.
This was a big race for us, the biggest crowd we have run with: between 12-13,000 runners for both the half and the 5 miler. It was a younger running crowd in general and a lot of fit looking and thin runners. I mention this because I am still a bit self-conscious about racing as an overweight runner. I definitely do not have a typical runner's body, but lately when I start dwelling on this fact, I just keep reminding myself that I used to be 60 lbs. heavier and because of my illness, could barely leave the house most days, or even the couch. That seems to do the trick!
We started at the back of the pack which honestly ticked off my husband a little bit. He wanted to be more in the middle, because he wanted us to fully experience the crowd and he thought it would be a better experience. But I know that I am a slower runner and it is easier for me mentally to be towards the back so that I don't feel pressured by people constantly passing me. One of my biggest race mistakes has been starting off too fast and then struggling to finish. This had to be my way in order for us to succeed.
Before the gun went off, the National Anthem was sung and Amazing Grace was played on the bagpipes in tribute to those who have died in the line of duty. It was very touching and also amazing because I have never been anywhere with 12,000+ people who have all of a sudden fallen completely silent. It was a moment I won't forget.
We started off on our way and I have to say, it was utterly amazing. You start off on Seaport Blvd. headed towards downtown. I love the Boston skyline and here I was me, Christine Molloy, RUNNING into the Boston skyline!. So surreal. I made sure we started our pace off slow and did my typical run/walk combination. I had stopped using a timer to do run/walk intervals about a month or two ago and instead, started listening to my body. This seems to be working well for me.
The course then took us through Post Office Square, Faneuil Hall, Government Center, Charles Street, Beacon Hill, Boston Common and the Public Gardens, Chinatown, Financial District, and then back to Seaport Blvd. That was for the 5 miler. The half marathon runners separated from us at about Mile 2.5 and headed towards Storrow Drive.
I thoroughly enjoyed this race course. It helped that the weather was cooler and there was no sun, which for me and my autoimmune stuff, is a really good thing. The course was relatively flat, with about four hills. They were decent hills, but very manageable and most importantly, short! It was the coolest thing for me running through these various neighborhoods, while hearing all the spectators cheering us on. My husband ran with me and to be honest, that did help push me harder when all I wanted to do was collapse. Our goal was to finish the five miles in 1:15:00, so one hour and fifteen minutes. In this race my biggest challenge was not my muscles and joints, but rather my breathing. Allergy season has hit me harder this year than like none before, so that was a bit tough, but persevere we did!
This race was also a very well run and organized one, There were a ton of volunteers and plenty of water/Gatorade stops along the route and I was grateful for that. The course was clearly mapped out along the way and there was a ton of encouragement among the runners and spectators.
I started to really struggle around Mile 4, but I knew we were going to be turning the corner back onto Seaport Blvd. very shortly. The crowds grew bigger and I was determined to make sure I walked less and ran more. I knew we were definitely not last as there were quite a few runners behind us and I pushed harder because I always like to finish strong. By this point I was doing some running with my hands lifted up and locked behind my head because my husband said that it would help me to expand my lungs more, which it did. The great thing about races is that I have found that people cheer MORE for those towards the back, because they know it is probably harder for them.
Thank you to every single spectator that cheered for us. It made such a difference!
Then, I saw it.
One of the runners who had already finished was wearing a medal!
And then I saw another. I didn't realize that they were giving out finisher medal for this race. My husband and I always joke about how it will take forever for me to earn a finisher medal because in New England, they only seem to give them out for half and full marathons, unless you are a winner. And I knew it was going to take me a while, if ever, to run a half marathon.
As we ran the home stretch, I pushed even harder to earn my medal. We approached the finish line clock and I saw the time....
Oh my God, we were so close to meeting our goal, there was no way we could miss it! So what's a girl to do? Start sprinting of course...all 190 lbs. of me. Sprinting like it was nobody's business and like I was a Kenyan runner. So did we make it?!?
Yes! Right before the clock hit 1:15:00.
Except as has happened before, I forgot one thing...
We had started in the back. Which meant that we started approximately five minutes away from the start line and actually had a better time than 1:15:00!
Official time: 1:09:48. It was the first race I have ever run a pace under a 14-15 minute mile. Race pace was 13:58 minute mile. I placed 255/274 in my age group and 175 people finished after us. A great improvement from my first race (5K) on Jan. 1st when we came in last.
After we crossed the finish line, we walked down the chute towards the water, snacks, and medals. I was bawling like a baby...quite unexpectedly actually. I was trying to make myself stop so all the medics staring at me wouldn't think something was physically wrong, but I just couldn't help it. The only other time I had cried after a race was when I teared up a bit after my very first race Jan. 1st; but nothing like this. I was just so overwhelmed with emotion from the morning.
I pulled it together, but of course started again when the volunteer put the medal around my neck. Yes, it was a finisher medal and not an award medal, but I didn't care. I have been training and working so hard on this. The same woman who two years ago, was partially paralyzed from Guillain-Barre, and the same woman who has fought overwhelming physical obstacles to get to this place and this moment in time. That medal signified the overcoming of every ache, pain, and obstacle I have had in the past several years.
It was my tangible representation of perseverence and courage.
It was my "to hell with you Sjögren's" medal.
Now, it will be my constant visual reminder of exactly what I am capable of.
Photos Courtesy of: Chuck Myers (click on name to get to photography website).
Saturday, May 10, 2014
There are moments and events in life that are so profound that we cannot help but be forever affected by them. This conference was one of those for me. I had written in my last post about the logistical aspects of the conference and now, I finally get to write about the trip itself and how the overall experience was.
I can sum it up in one word: incredible.
OK, that doesn't even really sum it up, but I thought I would try!
As I mentioned in the previous entry, my husband and I arrived in Chicago a day early so that we could try and get some sightseeing in, as neither one of us had ever been to Chicago before. So we flew in Thursday morning, unpacked, and immediately made our way to the subway stop by the hotel to head into downtown Chicago. We spent some time in Millenium Park as we made our way towards Navy Pier, which I was very excited about. We enjoyed it there, although I think it would have been better if we had not gone during off-season, as a lot of things were closed. But, we rode the giant Ferris wheel, which gave us amazing views, and then did the one thing I have been talking about since I found out we were going to Chicago...
I saw one of the Great Lakes! As a New England girl who is an ocean and water lover at heart, this was a huge deal for me. Despite the less than stellar weather, we got to take in the views of Lake Michigan, as well as the lighthouse that is situated there. If it was warmer, I could have sat there all day!
|Me at Lake Michigan!|
We were going to try and eat dinner downtown and go to one of the observation towers, but we had been awake since 4:30am, had changed time zones, and we still had two full conference days ahead of us. So, we headed back to the hotel, via subway, and ate dinner there. Sometimes that's just the breaks when you have a chronic illness; concessions have to be made and you have to ration out your energy.
The next morning, I didn't have to be downstairs at the exhibit hall until about 11:30am, which was good. It gave me time to pull myself together because honestly, I was a wreck. You have to understand that I had been working on Tales From the Dry Side since 2011. I had been communicating with people from the SSF, book contributors, and blog followers for YEARS, but had never met anyone in person. Besides meeting all these people and friends of mine for the first time, I was doing a book signing AND speaking that day as a panelist. I was shaking like a leaf by the time I got downstairs. It felt like this was the culmination of all my hard work and dedication to this project over the past several years.
We went downstairs, met some of the staff from the SSF first, and then my husband and I set up our table. The table was right next to the book sale table, where all the SSF books were being sold. I have to say, I am glad I put as much effort into creating the book table as I did. Besides the book sale table, we were the only non-pharmaceutical table in the exhibit hall.
At 12:30pm, the exhibit area was opened and from there, my weekend was non-stop. I was shocked over how many people came to our table, not just to have their copy of the book signed, but to talk, ask me questions, and share their own stories. I have been doing a lot of this online this whole time; communicating with other patients and sharing stories. But, it was MUCH different doing so in person.
Everything is different in person when you are meeting people face-to-face for the first time. It was so hard for me not to cry when I finally got to meet these online friends and book contributors that I have known for years. These strong and amazing women that share their journeys with me every day, or every week. Really, words can not do it justice. You can tell so much from a person by communicating with them on Facebook, or via e-mail, several times a week, but it is a real treat to get to hear their voice, and notice their mannerisms! A bunch of us went to dinner on Saturday night and it was so funny because they all knew me, and some of them knew each other, but they didn't ALL know each other. Despite this, we got along famously and it was an evening that I know I will never forget. Imagine sitting at a table with four other women (or people) who have your same exact weird, unheard of, illness. But, you know them already, in a way. And, they all get it! That's a level of comfort that can be hard to find in the world.
|The two women to the left are Tales from the Dry Side contributors, Sandy and Sandi. The women on the right are long-time blog followers, Vicki and Sarah.|
The entire two day conference was non-stop. If I wasn't in a session with all the other attendees, I was out at the book table. It was a little strange because people knew who I was (from the table and the speech I gave as a panelist). People would stop to talk to me in the bathroom, the lobby, even on the shuttle bus back to the airport on Sunday. And, it was great. I felt all this knowledge I had from being a Sjögren's patient all these years was doing some good.
One of the biggest highlights of the weekend for me was on Friday when I spoke on a patient panel about my experience with the illness and about why I wrote the book. I am NOT a good public speaker, although in hindsight, I am a much better one than I ever gave myself credit for. It was needing to get past the fear and anxiety of the task itself. My husband had suggested that I write out some note cards to help prompt myself, but I decided to wing it...the whole thing. I thought that if I thought about it too much, I wouldn't be an effective speaker. I also have a bad habit of looking down, and not up, when I am nervous and speaking in front of a crowd. Now I would HAVE to look up! After all, it was my story...I knew it by heart.
|Two blog followers/friends were also asked to speak on the patient panel, which was awesome! This is Heidi.|
|And this is Lara!|
I had about ten minutes to speak and it was truly ten of the most liberating moments of my life. It was me at a podium with about 450-500 people in front of me in a very large ballroom. I looked out at the crowd, and I just spoke. It was very important for me to not only tell my story and speak about the book, but to let people know that they are not alone, that they have to fight to get their medical needs met, and that they can never lose hope. And, that was what I did. Looking back, it is still hard for me to believe that that was me who spoke with such confidence and conviction. Sometimes, we never know what we are truly capable of, until we do it.
|Me trying to make a point.|
After that panel session, I got inundated at the book signing table, but one woman in particular stood out to me. She was waiting to speak with me and I noticed she was crying, a lot. At first I thought that she was sick or something and then when I went around to the front of the table to see if she was OK, she hugged me and told me she was crying because of how much I inspired her when I spoke. And that I gave her hope.
That happened frequently at the conference; people telling me that either Tales From the Dry Side, my speech, or both, affected them in some profound way. They could identify with the stories from my fellow authors and they found what they were looking for and that was solace and hope. I had a woman tell me that after hearing my story, she was now going to be an Awareness Ambassador for the SSF because she figures that if I could go through what I have been through and then write this book, then she could do her little part for the cause. I heard other spouses telling my husband what a great support he is to me (that still makes me cry when I tell people about it). Finally, him getting the recognition he deserves because let me tell you, it is not easy being the spouse of a person with such a difficult illness.
I was so deeply touch by hearing other's stories. They actually inspired ME. I had a very tough time physically getting through the weekend and hearing how some people struggle even more than I do, and yet still keep a positive attitude, helped fuel me through the whole event.
I guess I would seem up this experience like this: I felt that the entire conference, in some way, validated my struggles. I told my husband this, and I don't think he agrees with me on it. I am not a believer that God made me sick just so that I could help other people. Actually, I don't even believe that God made me sick at all. But having all these experiences with people at the conference confirmed my belief that all the pain, sadness, and struggles I have had with Sjögren's syndrome have served a purpose.
Every negative experience I had with a doctor.
Every painful procedure.
Every time a person said to me "you don't look sick."
Every loss I suffered due to this illness whether it be my career or home.
It has served a greater purpose in that I have been able to use it and turn it into something that gives other human beings information, inspiration, and hope. Not everyone gets that sacred opportunity so I thank each and every one of you who I spoke with and gave ME as much back as I have given you.
|From the airplane on the way home.|
Wednesday, April 30, 2014
I had been preparing for this year's SSF National Patient Conference since last summer. I had been invited to speak on a patient panel and to do a book signing for Tales From the Dry Side, both of which I had been looking forward to. I had never done anything like this previously, and it promised to be quite an adventure.
My husband and I flew out to Chicago on April 24th so that we would have the 24th to do some sightseeing. The conference was being help April 25th and 26th, and then we would be flying home very early of the 27th. In this entry, I am going to focus on some of the technical aspects of the conference. I am doing this because I have come across quite a few people online who have wondered what the conferences are like and if it is worth the money for them to go. It can be a costly venture, especially if you need to fly in and because for many of us, resources are limited. I thought this entry might be helpful.
This year's conference was held at the Hyatt Regency O'Hare in Rosemont, Illinois (Chicago). I thought it was a great place to have a conference for many reasons. For one, the subway station was less than ten minutes around the corner and gave you direct access into downtown Chicago. This is what my husband and I did on our first day there and it saved us a fortune in cab fares. It was our first time in Chicago and we were not disappointed. We spent many hours walking the streets downtown and ended up visiting Millenium Park and Navy Pier.
I found the Hyatt staff, rooms, and conference area to be simply outstanding. The first night we were there, we came back from downtown before supper because I was exhausted and I still had two full days ahead of me. We ate at the hotel restaurant where I ordered GRASS-FED (yay!) hamburg and my entire meal was gluten-free/Paleo. The healthy food choices at this hotel amazed me. I also got a gluten/dairy-free meal during the conference for Friday night and Saturday lunch, both of which were delicious.
|Tales from the Dry Side on the big screen!|
I was also impressed with the organization of the SSF in setting up and orchestrating the conference. The following is an outline of the sessions that took place during the conference:
* Overview of Sjögren's Syndrome: This was a very thorough history of the illness, as well as the diagnostic testing and available treatments. Little dry at times, but I think that was partly because I was well versed on all the information. Definitely a good primer though for those newly diagnosed.
* Pulmonary Issues and Sjögren's: This lecture covered EVERY aspect of pulmonary issues in Sjögren's. It was interesting and I think most valuable as many people go around for years with Sjögren's related pulmonary issues and are dismissed or never treated appropriately.
*Gastrointestional Issues and Sjögren's: Another excellent lecture. The highlight for me during this lecture was to see in print in my conference manual, and to hear Dr. Nichols speak about, esophageal motility disorders in Sjögren's. Esophageal motility disorders can happen in up to 1/3 of us and they are related to the illness, despite that I was told by some doctors that mine was not. I am going to photocopy these pages from my manual and mail them to my doctor.
* How I Stood Up For Sjögren's: Of course this was my favorite since I was a panelist! But all joking aside, I loved hearing the other panelist stories and I think that it opened up the door for other conference attendees to approach us and have discussions after the session. We basically told our Sjögren's story and then talked about what we did to promote awareness; i.e. for me, publishing a book.
* Banquet Award Dinner: This was a dinner in which awards were presented by the SSF for numerous accomplishments. My favorite award was the one my rheumatologist, Dr. Ann Parke, received which was the Healthcare Leadership Award. After the awards, we heard the keynote speaker, Mary McDonough, who has Sjögren's and lupus, give her speech She is an actress who played Erin Walton on The Waltons. I am about to start reading her book!
* Clinical Practice Guidelines Update: I will be honest. This was first thing in the morning and I thought it would be boring, My mistake; it was really good. Three different rheumatologists sat on a panel and talked about the three different clinical work groups they are heading. Each doctor talked about the different practice guidelines for systemic illness, oral illness, and ocular illness associated with Sjögren's. They talked about different management algorithms and future investigations for treatment. Definitely information that we, as patients, can bring back to our doctors.
*Sjögren's Walkabout: This was one of several Walkabouts that takes place in the country each year. Despite some less than stellar weather that weekend, it was perfect our for our Walkabout. It was nice to walk in solidarity with my husband and friends.Thank you again to everyone who donated to our funding campaign!
* The Next Chapter For Sjögren's Patients: This session discussed what is in the future for the SSF and the illness. It was brief. OK, truth be told, it was brief for me because I was still out in the exhibit area signing books and didn't make it back in time for the entire session.
* Overlapping Major Connective Tissues Diseases: There was a lot of information here. Because I knew I had an autoimmune illness long before I was diagnosed with one, I knew most of this information, but that being said, it was extremely valuable for patients. A lot of discussion about lupus, scleroderma,, and rheumatoid arthritis.
* Nutrition, Wellness, and Autoimmune Disease: I was VERY happy to see this included in the program. As you all know, I am a big advocate of nutrition and wellness for healing and it was good to see something included in the conference that was not based strictly on a medical model. If I had my way, next year's conference will include more of this!
* What is in the Clinical Trial Pipeline?: I found this interesting. Different medication therapies were described as well as how clinical trials work. Dr. Ford was an excellent speaker and explained things in relatable terms.
As you can see, it was quite a busy two days! In between sessions and at the beginning of the day, and end of the day, the exhibit hall was open which is where the Tales From the Dry Side table was, along with an SSF book table and numerous vendors. I am in the process right now of trying the different products so I can review some of them online and I have to say, I am on to a few great ones I think!
It was truly a great conference and I am looking forward to writing the next installment this week which focuses on my personal experience at the conference. Stay tuned! Also, if you would like to view some photos that my husband took during our adventure, head on over to the Thoughts and Ramblings Facebook page where some are posted....
|Busy signing books!|
Photos: Courtesy of Chuck Myers at myerscreativephotography.com