Sunday, March 1, 2015

Sjögren's and Interstitial Cystitis


Several years ago, in 2012, I began to have some issues that confused the heck out of me. I was having some urinary symptoms such as feeling like I had to go all the time, lower pelvic pain, and oftentimes feeling like I could not quite empty my bladder. These symptoms would wax and wane and were episodic in nature. I would go to the doctor and often, I would get treated for a urinary tract infection (UTI), even though my urine sample was always negative. However the symptoms I was experiencing seemed like they were classic UTI symptoms.


Around the time of my wedding in Spring 2013, the symptoms were acting up, but it was the months between my wedding and honeymoon that were the worse. The pain was relentless and had actually become crippling at times, I constantly felt like I had to urinate. During this time I saw a urologist in western Massachusetts. I had found some information in The Sjögren's Book by Daniel Wallace which pointed to the suspicion that my symptoms may be related to something called Interstitial Cystitis (IC). The doctor's appointment was a nightmare. He insisted that this was not the issue and furthermore, IC is not at all related to Sjögren's syndrome.


Well, things were getting worse by the week and I realized that I couldn't go back to that doctor and I needed help. I did my own research and ended up in the urology clinic at Lahey Clinic in Burlington, Massachusetts. These doctors were top notch in the urology world and by the end of the first visit, they told me I likely had IC. As an aside, I highly recommend Lahey Clinic and this was also a perfect example of how important it is to advocate for your own health care. They put me on a bladder medication and had me radically change my diet to avoid foods with high acid content, as that can make IC much worse. I got no relief from the medication and minimal relief from the diet.


One month before my honeymoon, they brought me to the operating room and did a procedure called a hydrodistention with cystoscopy. Typically, you can see an indication of IC during this procedure and although the doctor did not necessarily see what he was looking for in terms of diseased areas, they went ahead and did the hydrodistension part of the procedure to flush away any inflammatory cells that may be present.


I did unbelievably well with the procedure and my symptoms disappeared. Since that procedure in August 2013, I have had a few very minor pain flare-ups with my bladder, but I can always correlate it with an increase in acid in my diet. As soon as I fix that, I am good. I am firmly convinced that  the Lahey Clinic they did was what got me on the road to recovery and since then, I have tried to be very vocal about the possibility of having IC with Sjögren's so that more Sjögren's patients like me don't suffer more than they need to. Especially since that first urologist I saw was so uneducated and uninformed.


I was delighted to open up the February 2015 Moisture Seekers newsletter last week to see an article about Interstitial Cystitis. Because the article is so well done, I am going to reprint it below for your information:



Intersitial Cystitis (also known as IC) is a chronic bladder condition that usually consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, urinary frequency (needing to go often) and urgency (a strong need to go). IC also can be referred to as painful bladder syndrome (PBS) and chronic pelvic pain (CPP). The exact cause is unknown, but researchers have identified different factors that may contribute to the development of the condition.


About 25% of IC pateints have a definite or probably diagnosis of Sjögren's and as many as 14% of Sjögren's patients are estimated to have IC.


Some things you can do to control your IC include:


1. Avoid or limit foods and beverages that may irritate the bladder, including coffee, tea, soda, alcohol, citrus juices, and cranberry juice. For some, spicy foods may be a problem as well as foods and beverages containing artificial sweeteners.

2. Apply heat or cold over the bladder or between the legs to alleviate some pain.

3. Modify or stop Kegal exercises which may make pelvic floor muscles even tighter.

4. Avoid tight clothing to prevent further irritatiion and restricted blood flow to the pelvic region.

5. Treat constipation.

6. Develop healthy sleep habits as sleep is crucial for pain control.

7. Adjust fluid intake. Increase or decrease depending on your situation.

8. Retrain your bladder by learning to urinate on a set schedule and not when your bladder tells you.

9. Find healthy ways to manage your stress since it may make IC symptoms worse.

10. Find, in advance, the locations of restrooms along your route when traveling.

11. Get active! The health of the bladder depends on good blood flow to the area and having flexible and strong muscles around your bladder and other pelvic organs to protect and support them.

12. Quit smoking. Cigarettes may irritate the bladder and worsen the pelvic and bladder pain.

13. Take a trial and error approach to treatment as no one treatment works for everyone. A combination of treatments is often necessary to get your IC under control.

14. Track how your symptoms change with treatment and speak with your healthcare provider if you think a therapy is not working.


Visit the Interstitial Cystitis Association website at www.ichelp.org for the most up-to-date and accurate information about IC and to find knowledgeable healthcare providers.


******Reprinted from The Moisture Seekers, Volume 33, Issue 2, February 2015.*****

Tuesday, February 17, 2015

Read "On Being Naked" on The Manifest-Station


I have been a writing a lot lately and I thank the Lord for that. I was going through a difficult time with my writing, which started sometime before Tales From the Dry Side was published and lasted right up until about the end of 2014. Part of the reason was due to being so busy in early 2014 with the book and starting a new job back in the nursing field (yay!). I love and am absolutely proud of Tales From the Dry Side, but the marketing that goes into self-publishing a book successfully is astronomical.The other big reason for having a difficult time with my writing was that I was having a hard time connecting with myself and I just couldn't seem to get it together to make the sentences come as often as I would like.

Some of my blogging, maybe half of it, is writing designed to teach and inform, mostly about Sjögren's syndrome and autoimmune diseases in general. The rest of it takes the form of a personal essay. If I just wrote personal essays for the rest of my life, that would be fine with me. I may try my hand soon at fiction again; we will see. I may try and publish another book. The jury is still out on that one.


Lately, for reasons that have recently become clear to me, my writing has been more intense, more authentic, and not to sound like a jerk, but good. More like great. Great because I am more willing to share more of my personal experiences and feelings with my readers and at the end of the day, we are all human. We all want to connect and know that someone else feels how we do. Some of the writing never gets published or makes it to my blog; its just for me.


My girlfriend, Tina, is one of those people who connects well with others. I know that if I want to get together and have a chat with a gal pal and have a conversation with some real depth to it, she's one of my girls. A few months ago, Tina introduced me to a website called The Manifest-Station, founded by Jennifer Pastiloff. Jen is a writer, yoga instructor, and overall great human being. She leads sold out workshops all over the world which you can check out HERE if you'd like. Tina knows how much I am devoted to writing, yoga, and how sensitive a soul I am. The Manifest-Station is a website/blog where sensitive souls, and excellent writers (including Jennifer) share their personal experiences and more importantly, look for the beauty in every day life. Also known as Beauty Hunting.


Tina also called my attention to the fact that The Manifest-Station was accepting essay submissions. I was working on a piece that had to do with body image issues and I thought it would be a good fit for The Manifest-Station. I found out yesterday that the piece was accepted and it was published this morning.A huge thank you to Jennifer Pastiloff and her staff for loving this piece as much as I do. You can read it by clicking on this link:


On Being Naked


Sunday, February 15, 2015

Who Reads Thoughts and Ramblings?


I few days ago, I posted a status update on the Thoughts and Ramblings Facebook page (which you can find HERE) asking readers where they are from. On the Facebook page, approximately 5% of those who liked the page answered the question and that is where I got all the information about states in the U.S. where people are located.This is a huge issue I have with Facebook because for very small business pages like mine, my posts often do not show up in the newsfeed, so I know I am missing a ton of information on this poll. However, I also have some information on where people are from included in my statistics for this blog, countries only. I wanted to tally up some information on these statistics because I am curious and also to see how far this blog, and its information, is getting.


From the information, however limited it is, I did get, I was able to tally up the following information:


Thoughts and Ramblings followers are from at least thirty-one states in the United States of America and three provinces in Canada. In addition, besides the U.S.A. and Canada, there are readers from at least ten other countries including Ireland, England, Ukraine, Mexico, India, China, Germany, Taiwan, Italy, and Australia.


I think this is awesome! Thank you to all who responded to the poll on Facebook and to all of you who follow this blog, share it with others, and help raise awareness about many of the issues that I discuss here, especially autoimmune illness!


Friday, February 13, 2015

Luck Has Nothing To Do With It


For the record, I have only ever written one post regarding Valentine's Day. I was with my current husband and the post was about how anti-Valentine's Day I was and had always been. It is just one of those things where I feel like it is a holiday that is overdone, commercialized, and unnecessary because honestly, we should be doing a little Valentine's Day each and every day. However Valentine's Day holds some importance with my husband so last year, for the first time, we made solid Valentine's Day plans for dinner. We never made it to dinner because on route to dinner, I required a stop at the Granby Fire Department and a subsequent ride to the local emergency room. Long story that I would rather forget!


This year we are planning on doing something, but never got to the point of actually making a reservation, mostly my fault because I don't want to jinx it after last year and we are expecting yet another major snowstorm in Massachusetts, so I think we are going to wing it. Honestly, whatever my husband wants to do is fine with me. I just want to be with him.


This morning I was puttering around the house doing my usual "get my body ready for the day" routine and The Today Show caught my attention. They had cameras going at the Rockefeller Plaza skating rink where some popular female singer was singing some beautiful love song that you have all heard on the radio. There were twenty-five couples skating around on the ice and then all of a sudden, one person from each couple dropped on one knee and proposed marriage.


OK, typically I would think how lame this was. Not because I am not a romantic, I really am. But just because of how corny and public it all was. Instead, I started bawling like a baby. It was ridiculous. Molly (my dog) sat up and was staring at me wondering what was going on. And I kept crying.


I realized that I was so touched by the whole thing because I spotted several couple on the ice skating rink during the mass proposal event that were obviously older than the traditional marrying age that we are accustomed to hearing about. Couple that looked like they were in their 40's, 50's, and 60's. For those of you who do not know, I was 42 when I married Chuck and he was 56. Not a first marriage for either of this, and maybe not for some of those couples on television either.


Seeing or hearing about later in life marriages always make my heart sing. And that is what brings me to this Valentine's Day post today.


I frequently hear from people about how lucky I am to have met my husband. From what I have experienced and from what others have told me, it gets harder to meet a guy like my husband (or a wife like myself!) as you get older. I would agree with that, on all counts. It IS harder and I AM lucky. I married a faithful, loyal, handsome, hard-working, hysterically funny, kind, compassionate, humble, and unique man. I am attracted to him on all levels more than I have ever been attracted to any human being.


He is my best friend.

And, luck had nothing to do with it.


While I will tell you that I think he was placed in my path by God (we did meet at church!), luck was not a factor in the development of our relationship and subsequent marriage. We have this beautiful marriage because both of us took risks and overcame fears; fears that we each carried for years and years. I obviously will not speak of his fears and his previous hurts, but for me, it was substantial.


When I found myself in the midst of a crisis, my first marriage, that seemed like it was going to destroy me, I found myself a church and also a community. I took a risk on getting to know new people and let them in, just a little at a time. The same church where I years and years later met Chuck. Once I left my first marriage, I worked on myself, on knowing who I was. I worked on being strong and whole again.


I eventually took more risks. I dated. Contrary to what some people around me believed, I was NOT looking to jump into another relationship. I was looking to have some fun for the first time in years. And when I decided that I was ready, I delved into a relationship and I fell for the wrong person, yet again. And I decided that I was done with dating for a while.


Then I met Chuck. I wasn't looking to ever get married again or even get seriously involved. But we became friends and I was so drawn to him, that we oftentimes found ourselves together in the same room, in the same space. When we started dating, I had to deal with quite a bit of anxiety because I did not want to risk being hurt again. I didn't think I could completely trust again. My heart had been so battered and torn that I thought fending and caring for myself was all I could manage. There was no room for anyone else, there was no energy to love again.


But I did. I had to work on trusting again and making myself vulnerable. Eventually, I completely let him in. We talked a lot. I told him my fears and he told me his. I healed.


Besides those fears and insecurities we originally had, we worked very hard at our relationship. We both have had to make substantial sacrifices to be together. One, that early on in our relationship, I didn't think I could make and almost left because of it. And he took on the burden of getting involved with someone that has a severe, chronic illness. An illness that leaves the future uncertain. But people don't always know about those things, the compromises and the sacrifices. The things that luck has nothing to do with, but love, commitment, and devotion do.


So why am I getting into all this today? Because two really good people, who had given up on love and despite the odds, not only found each other, but made it work. At a time when many people on Valentine's Day have already been married ten, fifteen, or thirty years, our journey is still just beginning. At a time when many people are sitting home on Valentine's Day as a single person either loving that fact, or hating it, I am here to tell you that if you want love in the form of a lifelong partner and companion, it is never too late for that and you are certainly never too old. But that being said, it does require risk and it does require working through the fear. It does require putting yourself out there. And I am also here to tell you that when it is the right person, it is all worth it.


And on this Valentine's Day, if you do not have a romantic partner and/or don't wish to have one, I hope that you remember that despite the media attacks on our senses, love is not about diamond rings, sharing a bed or dates. It is about the love you hold in your heart and the love that others hold for you. Its about sharing your love with others and being open to the love they have to offer you. So to those in my life, my husband, stepchildren, parents, brother, sisters, nieces, nephews, aunts, uncles, cousins, friends, and co-workers, you are special and I love you.


Happy Valentine's Day.


Sunday, February 8, 2015

The Courage of Illness


Yesterday, my husband and I attended the Greater Boston SSF Support Group at Tufts. The February meeting is always unique every year because it is the one meeting a year in which we have round table discussions, instead of a guest speaker lecture. What happens is that different topics that people are interested in are submitted to the moderator. There are three separate sessions during the two hour meeting and in each session there is anywhere from six-nine different table topics. Each support group member goes to the table that has a topic they are interested in discussing with other members. It is a great way to learn and discuss topics that are of interest and are unique to each group member.


This year I facilitated two of the three sessions. One was on the topic on using low-dose naltrexone as a treatment for Sjögren's and the other was on the use of alternative medicine in Sjögren's. My husband and I also attended a session on complications from Sjögren's and he attended a session on his own about being a caregiver of someone with Sjögren's.


Both my husband and I recognized the many faces of those who have attended the group before, but it was very noticeable to both of us that there were a lot of new faces as well. As we spoke with people, we realized that that there were quite a few people who were newly diagnosed and I particularly noticed that there were more younger people than usual. Younger being defined as younger than being in their 30's.


The ride to the support group takes at least an hour and a half on a good day and the day of this meeting, I was definitely not feeling my best. I was in more pain than usual, more tired than usual, and basically just sick of Sjögren's; and the ridiculous winter weather we have been having as of late in Massachusetts. But I knew people were counting on me to facilitate these group discussions and I also had help getting there, so off we went.


As someone who has written a book on Sjögren's, writes a blog, has had the illness for quite a few years now, and does a lot of research, I often get approached a lot during these support group meetings by people asking for advice or asking questions. I will be honest, I love this because for me, it makes all the hell I have been through have meaning because I can then use my experience to help others. It can be a little overwhelming though on days when I am not feeling well. Not because I don't want to help or anything like that, but because it is harder for me to focus and pay attention. I'm sure many of you can relate to how that feels.


The low-dose naltrexone session I facilitated went well, but the alternative medicine session was incredible. I originally had estimated, according to the sign up sheet, that about six-seven people would be attending that session. The session ended up consisting of twenty-three people. After handing out information on a variety of alternative treatments, I had each group member talk briefly about their experiences, if any, with alternative medicine.. It actually surprised me how many people were using different alternative medicine treatments. Some of the most common treatments used were diet (specifically gluten-free and dairy-free), oil pulling (this surprised me, I thought I was the only one who did it), acupuncture, and turmeric. There was some really good discussion and sharing of ideas; an ideal outcome for a session like this.


Because I interacted with so many different people during this particular support group, I heard more personal experiences than I usually do during a meeting. As I have been thinking about the meeting since yesterday, there has been a common theme that keeps emerging in my mind. And that is how much we, as Sjögren's patients, go through on a day to day basis. And the amount of courage it takes to live with this crap day after day, week in and week out. I'm not just talking about the path to diagnosis, which as we know, is usually a nightmare in itself. But rather, the amount of care we need to provide ourselves in order to manage our symptoms each and every day.


For me personally, a lot goes into existing in this illness stricken body day after day and I think that I often take that fact for granted, mostly because I feel like I cannot always dwell on how difficult it is or I will spiral into a massive depression. I also think that a lot of what I do to manage my illness becomes routine at times and I also take that for granted because well, its my life and its what I have to do. Just the steps that I have to take every day to prevent complications as a result of the dry eyes and dry mouth is time-consuming. Seriously, think about what the average non-Sjögren's person does to care for their eyes and mouth every day. Most people I know brush their teeth twice a day and maybe floss once or twice a day. See a dentist every six-twelve months or so. Some non-Sjögren's people have to put in and remove contact lenses every day or keep track of their eyeglasses.


For those of us with Sjögren's, it is so much different: meticulous oral care such as frequent brushing, flossing, oil pulling, saliva substitutes as often as every hour, more frequent dental visits, special oral rinses, managing dry lips, dealing with swallowing issues from the lack of saliva, increased cavities, eye drops every thirsty minutes to an hour, warm eye compresses several times a day, waking up during the night from the discomfort of dry eyes and dry mouth, using and caring for a humidifier, trying to avoid dry environments, the list goes on and on.


And that is just our eyes and mouth. As we know, for most of us, that is just the tip of the iceberg. It doesn't include the management of pain, fatigue, and other organ complications with our lungs, heart, nervous system, digestive system, kidneys, bladder, etc. etc.


When I did a rough estimate of the amount of time per day I spend on managing this illness (including but not limited to: medications, treatments, physical therapy, diet management, phone calls, medical appointments, etc.), I realized that the average amount of time I currently spend managing my Sjögren's is three hours A DAY! And that is when things are relatively stable.


As I think about that and about all these patients yesterday, one word comes to my mind and that is:


COURAGE.


Guys, this illness business is not easy. One of the definitions of courage is: strength in the face of pain and grief. This courage we exhibit is something I needed to be reminded of recently, by people who understand what it takes to live with this illness. It takes an incredible amount of courage to wake up every single morning and know what we have to face...


The special care our bodies need.
The pain.
The stress of modifying our day to meet our physical, emotional, and spiritual needs.
The grief over what we have lost.
Finding treatments to manage an incurable illness.
Dealing with a medical system that at its best, is broken.
Facing the possibilities of long-term complications and even death.


People who don't know better or don't understand this invisible illness, they may say you are lazy, or weak, or making it all up. But friends, I know better. YOU know better. You are warriors. Each and every one of you. Despite the odds being stacked against you, you rally on. You go to work, or you educate others from the confines of your home. You tell your story. You care for your children and your parents. You volunteer to help those less fortunate. You rescue abandoned animals.


I have heard your stories.
You all exemplify courage.


Don't let anyone ever convince you otherwise.
Own your strength.




Friday, January 30, 2015

"You Matter" and the Art of Compassion


I had an experience this morning in a yoga class at my gym that was so significant, I would even venture to say it was spiritual in nature. One of those experiences when you know something special has happened and you cannot wait to share the beauty of your experience in the hopes that maybe it will help someone else, or make some type of difference in this world.


To back up a little bit, I recently commented on my personal Facebook page about a bunch of Bibles that I found in our home and kind of made a joke about how between my husband and I, we had a lot of Bibles; ironic considering the fact I felt like I had been having a spiritual crisis of sorts. However I have come to discover recently that my struggles have been the combination of an interpersonal crisis mixed with a religious one, rather than a spiritual one.


I have felt it necessary to try and work through some of the issues causing this upheaval in my life, both to improve the overall emotional quality of my life and of course, to improve my physical quality of life by reducing stress and anxiety. As I have been working through some of those various issues, I have started to look at my environment and many of the people in my life in a different way, some good and well, some not so good. I have started to look at myself differently and I have been able to make a lot of connections between my personality, behavior, events that have happened to me, and the way I function in the world. It is a process that has, as recently as yesterday, been gut-wrenching and also one which has made me realize that I need to make some changes in how I do business and who I do business with so to speak. The therapeutic process has left me feeling incredibly vulnerable and also feeling the need to strive to take care of myself on a much higher level than I am used to.


And here is where the yoga comes in. I have blogged before about the gentle yoga classes at my gym and how helpful they have been in managing many of my autoimmune symptoms. But I tend to be sporadic in how frequently I attend the classes. However last week, after a very difficult therapy session and subsequent discussion with my husband, I knew I needed to better manage some of my emotions. My previous vices have been bad food and alcohol. The food I have a problem with already, so that was a bad idea. The alcohol I don't have a problem with, but when I do drink (which is rare these days), I want to drink for pleasure and not because I need it as a coping mechanism. Because in my experience and in the experience of many people I love, that is a very slippery slope.


So instead, I impulsively attended an evening yoga class at my gym that I had not previously been to. The class went great and I decided then and there, that I would attend yoga at least 3-4x a week for now since it greatly helps me redirect my anger, fear, and all those other emotions that come from dealing with hard shit; not to mention that it helps pull myself into a more peaceful place.


This led me to a different yoga class this morning that I also had never attended. A different instructor and not a gentle class. The uncertainty of the class level made me pretty nervous, but it was the only class of the day and I was now needing yoga classes as often as some people need AA, so off I went.


The instructor realized I was new to the class and came over to talk with me. I briefly explained about my autoimmune and joint issues and he assured me that I could go at my own pace and he would provide alternatives for some of the more difficult poses.


The type of yoga practiced in this class is Kripalu yoga. Many people that live in my area are familiar with the word Kripalu because it is also the name of a yoga retreat center in western Massachusetts; where this style of yoga originated. Until today, I didn't know that Kripalu was also a form of yoga. What defines Kripalu yoga is its emphasis on following the flow of prana (life-force energy), practicing compassionate self-acceptance, and developing witness consciousness (observing the mind without judgment). Then you take that off the mat and into your daily life. 


The instructor explained to me that the word Kripalu means "compassion".


Compassion??


I was so in the right place. 
Because if it was one thing I needed right now, it was compassion.


I don't know if I can exactly explain the hows and whys of why this class was so different for me except to say that it had an emotional component that I had not really fully experienced in a yoga class before. There were many challenges for me physically during the hour long class because a lot of the postures and sequences were new to me, but through my breathing and by listening to the instructor's voice, I was in a very different place with my body than I usually am. An easier place. A better place. Then the instructor said a quote:


"Yoga is the practice of tolerating the consequences of being yourself.” ~Bhagavad Gita.


Honestly, my thoughts were so turned inward and focused, I don't remember when he said this quote, maybe it was at the beginning of class, maybe it was in the middle. What I do remember is the shock I felt go through me as he spoke the words.

Isn't that what I had been doing for weeks now?
Tolerating the consequences of being myself?


Well actually no, I hadn't been tolerating anything. I was scratching and crawling my way through it...always fearing what new revelation or fear was going to appear around the corner.


Now though, on this mat, in this room, by doing this yoga, I was tolerating the consequences of being myself: of being in a mind that over thinks and never shuts off; of being on the receiving end of events I shouldn't have had to go through, of being in a body that just doesn't work the way its supposed to.


A body that here, in this moment was, in its own way, working as it was supposed to.


I was giving both my body and my mind the one thing I really needed and that was...


Compassion.


Then at some point, we sat in a comfortable cross-legged seated position and the instructor is talking. At first, I am so focused that I miss the beginning of what he says. Until I look up and see him staring at us intently and I hear the words:


"You matter."


I'm in a class with a bunch of strangers and an instructor I do not know. Yet, I hear words of such compassion; words that at that exact point in time, I really needed to hear. Words that convey to me that not only does my existence matter, but so do my experiences and my interpretation of those experiences, both good and bad.


And, I start to cry.


I try not to cry because the tears come so unexpectedly that at first, I am embarrassed. But then I stop worrying about what other people may think and I just feel. I feel the compassion that not only comes from a total stranger, but the compassion that comes from myself, towards myself.


Compassion for my struggles.
Compassion for my flaws.
Compassion for the bad decisions I have made.
Compassion for the bad decisions made by other people.
Compassion for myself as a human being.


Two simple words, yet so powerful: you matter.


So tonight I am doing as the Kripalu way teaches: I am taking my yoga experience off the mat and into the world.


With you, right now.
By telling you that...


YOU matter.


Your spirit, your experiences, your energy, your beauty, your strength.


It all matters.


Please don't forget that.


Tuesday, January 27, 2015

Nutrition and Sjögren's


I posted on the Facebook page for this blog recently about a visit I made to a nutritionist. I had won, at an auction for the SSF (or rather, my husband won for me), a one hour consult with Tara Mardigan, MS, MPH, RD. She is a nutritionist in Boston, MA and also serves on the Sjögren's Syndrome Foundation's Medical and Scientific Advisory Board. Some of my readers asked if I would post the information about that visit and this is what today's entry is all about.


Anybody who follows my blog know that I feel very strongly that diet and nutrition play a huge part in dealing with autoimmune illnesses and is a very underutilized treatment option for all patients. I was running into a few issues with my nutrition lately, mostly because I was freaking out over what I was "supposed" to do. Since my diagnosis, I have been vegetarian, gluten and dairy-free, Paleo, and on the Autoimmune Protocol. I have had significant relief at times with the gluten and dairy-free, as well as the Paleo. However Paleo was causing me some other problems physically, so I had to loosen up on that. The Autoimmune Protocol didn't seem to do me much good except make it so that I became a recluse in my house because I couldn't eat anywhere else.


I have some emotional issues around food as well, many of which have improved over the past few years, but still come back to haunt me when my stress level is high. This most notably happens when I am stressed out over medical issues. I definitely have an addiction issue around sugar, processed foods, fast foods, etc. So going in all these different directions with my diet was really just making these issues worse over the past six months. I wanted to eat to fuel and heal my body, but it felt like the more restrictions I imposed on myself, the worse my eating habits would get after a while.


I was curious to see what an actual nutritionist had to say about it all, so off to Boston I went. Honestly, I am in Boston so much, I should just move there! The visit went well and the following is the recommendations she made to me in regards to my diet. Please remember, these suggestions are for me; most likely, you will have different needs so these suggestions should not be considered appropriate for everyone. That being said, I think a lot of the suggestions are just a good way to eat for all of us:


* Aim for a bigger, more balanced breakfast.

* Aim for balance at mealtime using the Five Fingers Chart. This chart states that at every meal, you should strive to eat one serving from each of the following groups: fruit/vegetable; carbohydrate, protein, healthy fat, and fluid. You can eat more than one serving of vegetables/fruits (except for starchy veggies and dried fruit). The more color, the better. Choose smaller portions for tropical fruits.

* Aim for a Powerful Plate at dinnertime. Choose the Healthy Eating Plate on days you exercise (50% vegetables/fruits, 25% carbohydrates, 25% protein) and the Less Active Plate on days you don't exercise or have a very light day (75% vegetables/fruits, 25% protein). Adjust the amount of carbohydrates you take in based on your activity level. Less active, less carbs.

* Count corn, winter squash, parsnips, peas, and potatoes as carbohydrates, not as vegetables.

* Fruit with skin: 1 medium-large piece or 1 cup (berries, apples, pears, grapes, plums, nectarines,oranges, grapefruit.

* Fruit without skin: 1 small banana or 1/2 up (any tropical fruit)

* Consider a high powered blender such as Vitamix or Blendtec to support your efforts and increasing fruits and vegetables (significantly) in smoothies will be a great anti-inflammatory nutrition strategy.

*Try adding an intentional healthy snack between breakfast and lunch and/or lunch and dinner if you have a gap of more than 3-4 hours between. Fruit with 0.25 cup of nuts or unsalted pumpkin seeds or sunflower seeds is a great choice here. You are looking for fiber, a small amount of healthy fat and/or protein.

*Consider trying some non-gluten free options from fresh-made sources. Refer to FODMAP grocery list for some digestive-friendly choices (not necessarily gluten-free).

* Try fresh cut vegetables, such as cucumbers or carrots with red wine or white vinegar as a crunchy nighttime snack that's sodium-free and low in calories.

* Consider the "One Bowl" method for nighttime or mindless snacking. You can eat whatever you want (healthy or unhealthy) but you'll first stop and put the food into a bowl. Don't judge the food or the amount, but take a minute to pause. This is a mindful eating strategy and may help you gradually make intentional choices that help nourish. This is a difficult strategy but if you're able to stick with it, it will help you lose weight because you'll eat less and choose more healthful options. The book that inspired this idea is One Bowl by Don Gerrard.

* Be verbal when eating out. Ask for extra vegetables, prepared without butter or sauces. Ask for a side of pasta or skip it. Skip the bread. Avoid shiny and battered foods. Get open-faced sandwiches. Have the burrito bowl with a small spoonful of rice. Skip or split appetizers and desserts. Choose fish instead of meat. Ask for lemon wedges to add flavor.

* When dressing your salad, use fresh lemons and a small amount of olive oil. If you want creamy dressing, ask for it on the side and use a small amount.

* Continue with consistent (but gradual) hydration throughout the day with water.

* Great job with exercise. Continue with walking and yoga and hopefully you will be able to gradually get back into running again.


Whew! I know that's a lot of information, but I thought it was important enough to share with all of you. I had the appointment right before Christmas. I did read the One Bowl book she mentioned and started to implement a few of the suggestions, but Christmas eating really threw me off. I did try some non-GMO bread with gluten in it. I found that in small amounts (and I mean SMALL), I could tolerate it, but larger amounts seem to be a problem. I found this out when I dropped my gluten and dairy restriction for several weeks around Christmas. I also developed a lot of digestive issues when I ate a lot of gluten and dairy, issues that I have never had before. I am currently on the last day of a 10 day detox/cleanse which was my own doing; it was NOT a recommendation of the nutritionist. I will be blogging about that tomorrow or Monday. My plan for the few days following the detox is to ease back into eating normally again and then go full steam ahead with the nutritionist's suggestions.


One of the big things that this visit made me realize and understand is that despite all the different "diets" and eating plans out there that claim to cure or help your autoimmune illness, in the end, it may just come down to great nutrition on a consistent basis for many people. I am not saying that the Autoimmune Protocol or eliminating gluten may not help your symptoms; I know many people who find relief eliminating different food groups, such as with me and gluten. However, I think that for me, the answer may be more in eating whole foods in balance with each other, minus the gluten and dairy I need to limit, as well as limiting processed foods, soy, alcohol, refined sugar, etc. So basically, just eating healthy!


Please feel free to comment below on what nutrition strategies you have implemented to help your autoimmune illness, or even just your general health.