Wednesday, March 11, 2015
This post is being prompted by an incident that occurred last night. One that unfortunately, happens more often than I would like. And much more often than my husband would like. As I have talked about previously on this blog and on its Facebook page, I have been struggling with some issues regarding my feet. The issues started last July and after seeing a doctor, I was diagnosed with plantar fasciitis and tarsal tunnel syndrome in both feet.
The short version of the story is that I have been through months of physical therapy, countless doctor's appointments, night splints, trigger point therapy, orthotics in my shoes, the list goes on and on. It is likely that Sjögren's is a contributing factor and possibly the cause of this. Starting in December, I decided, after much consideration, to consent to cortisone injections in both feet. I had one in each foot with some relief, but the relief was only temporary. I then had a second injection in my right foot two weeks ago today and after a few days of some relief, things went from bad to worse, and pretty quickly I might add.
My right foot is now at the point where the tarsal nerve is so messed up and irritated, that a good part of my foot is numb. I am also getting little electric-like sensation from time to time and some pain. I am scheduled for an MRI at the end of this week and have been given strict orders from my doctor to stay off my feet as much as possible, with the exception of going to work. Luckily, I only work about two to three days a month for six and a half hours at a time. I was told absolutely no exercising or long distance driving, and I had to give up the one thing that always helps my stress and that is yoga.
So after working a regular shift at the school yesterday, I started with some pain around 5pm that by 8pm, had me reduced to tears. While I figured it was good that I could actually FEEL something in my foot, the pain became unbearable. Despite how much I go through with Sjögren's and pain, it is rare for me to end up in tears over it. The pain medicine I could take would likely keep me awake all night, but I decided to go ahead and take it, as well as some heavy duty sleep medication that I save for emergencies like this. Today I woke up rested, and with a numb foot again. But, crisis temporarily under control.
My husband was with me last evening and I have to say, he did a fantastic job of helping me through the evening. It is so hard for him, I know it is. We laid in bed together watching TV for several hours while I worked through this incident. Actually, WE worked through this incident together. However I know it is hard for him because we have talked about this issue enough for me to now understand how difficult it is for him to see me in pain or in a really bad way.
I didn't really know this or get it when we first got together...how much he struggles when things go bad with me. I didn't know because he is so stoic and calm. He always tries to cover his fears for my sake. But I know. Now I do anyways.
As we have grown together as a couple, our talks have helped him to understand my needs and what works for me. And the talks have also helped me to understand some of what he is going through when I am having a medical crisis of some sorts. And what works for us may not work for every person with a chronic illness or the person that is trying to care for them or help them.
Last night, like all the other times recently, he really got it right. Trial and error I suppose. And some really good communication on both our parts. For example, when I am in that much pain, I want to be held, but not too tight. Its hard for me to have the TV too loud or too much stimulation around me. I also need some type of physical distraction so what he does is he gently rubs my head, or massages my legs, or some other physical touch that helps my brain distract from the pain that I am experiencing. As long as it doesn't involve the part that is actually hurting.
And other times, it does help to touch the part that is hurting, although with nerve pain like I had last night, that was not the case. So how does he know? He asks me. And I am direct in telling him. And it works. And it works when he gets out of bed for the third time to get me the Motrin I forgot to take when I was up the previous time. And it works when he distracts me with ridiculous jokes or stories.
He also listens intently to what I am saying about my pain experience, if I even want to talk about it which if I don't, we have quiet time. When I talk about it, and he listens, he helps me figure out what the best course of action to take. For example last night, I was trying to decide if I should go ahead and take the pain medication because if I did, I would also have to take something to help me sleep. Otherwise the lack of sleep would worsen the pain cycle. However my husband knows that I am very careful about taking possibly addictive substances like this too often. He helps me think it through out loud to determine if yes, this is necessary or no, I can wait it out and see what happens. Last night, it was necessary.
Its not easy loving someone with a chronic illness.It takes an incredible amount of love and dedication to live this lifestyle each and every day with someone. One thing that I know has helped my husband is that he attends SSF support groups with me. Not only does it give him an opportunity to hear what it is like for other people to live with my illness, but it gives him a chance to talk to other partners, spouses, and caregivers about their experiences. At the last support group meeting we went to, he mentioned to me, after talking with other spouses, that he didn't realize how many Sjögren's patients also have a difficult time going out in the evening because by 6pm or so, they are ready for bed. Going out in the evening is a very difficult thing for my husband and I because I am absolutely exhausted and ready for bed. It takes a lot of preparation and pre-planning on my part to get myself out of the house in the evening. And, a lot of rest beforehand. Because he is aware of that, he makes sure to consult with me about activities, especially ones that just involve the two of us. For example, we don't go to the 8pm showing of a movie. You will instead find us at the 1 or 2pm matinee, where by the way, we save a ton of money going to an earlier show!
I used to feel guilty about the effects my illness has on my husband. I think I even blogged about that very topic at one point. I no longer feel that way though. And the reason for that is simple:
I no longer let my illness define every aspect of my life.
At least most days.
And together, we have established and defined what our normal consists of.
And with the help of his love, I have come to understand that yes, life is more challenging for us than for many other couples, but despite that, I have just as much to offer a partner as anyone else. Throughout all this, all my husband asks from me, both on my good days and on my bad ones, is that I love him.
And I do.
Completely, and without reservation.
And that makes every single day worth fighting for.
Thursday, March 5, 2015
A few days ago, I posted a status update on the Thoughts and Ramblings Facebook page asking those with Sjögren's/chronic illness if they could pick just one symptom to get rid of for the rest of their lives, what would it be. I knew what the answer would be for me, which was going to be the basis for this blog entry, but I wanted to see if others with Sjögren's felt the same way.
I was taken aback by how many responses I received with that poll and it was clear to me by the responses that fatigue was the clear winner; which is also the case for me. That relentless, brain-numbing fatigue that most people without a chronic illness typically cannot understand.
There was an article put out by the Sjögren's Syndrome Foundation last year that for the first time I have read, did an excellent job of describing the different types of fatigue encountered by those of us with Sjögren's syndrome. The title of the article was: 13 Types of Sjögren's Fatigue by Teri Rumpf, PhD. The article does and excellent job and you can read it by clicking on the article title link above.
For me, as for so many of us, the Sjögren's related fatigue that comes with this illness is often the most debilitating symptom we have to deal with, day after day, week after week. It affects every single aspect of our lives and even worse, fatigue is often misunderstood not only by the other people in our lives, but also by our medical providers. It is one of those invisible illness symptoms that is usually not outwardly obvious to other people. Or on the flip side of it, people think they do understand what the fatigue is like because they too have experienced "tiredness."
I'm here to tell you that illness related fatigue is nothing like being tired.
I remember the days, before I became ill, when I worked as a registered nurse on a busy pediatric nurse, often on my feet for most of my twelve (more like thirteen-fourteen) hour shift and then commuting an hour each way to work. I remember the years I worked the night shift and could barely remember my drives home because I was that tired. Exhausted is probably a better word.
But fatigue is different for me than tiredness or exhaustion.It is that feeling that I physically cannot take another step, even if my life depended on it. Sometimes it is predictable and sometimes it is not. An example of this is that if I work two consecutive days at my current job, it is pretty much guaranteed that sometime in the following forty-eight hours, the fatigue will consume me. That is predictable.
An unpredictable example is going out with friends on a weekend evening, which happened to me recently. I had made sure I got enough rest for twenty-four hours before we went out. I was in good shape for the first few hours, but halfway through a concert, at an intermission, the fatigue hit me like a freight train and I almost actually fell asleep during the intermission while sitting in my chair! I really thought I had my bases covered, but that night, the fatigue won.
And that's the problem, many times the fatigue does win. It very much affects my work life, what little I do have of one. It affects all my personal relationships and definitely my social life. And, it is frustrating as all hell. Because when you are fatigued, everything else is worse and I mean everything. It impacts my pain levels, my other physical symptoms, and definitely my ability to cope. It contributes to anxiety and depression and overall can cause a feeling of hopelessness.
I would say that fatigue is probably the issue I have had to work the hardest at and it has taken me the better part of the last seven years to do so. Working on it doesn't mean I can get rid of it, but it does mean that I am able to live better with it and improve the quality of my life. It means that even though I hate it with a passion, it does not always win. And the times it does, it does and I move on.
There are a few strategies that I have used to help me manage my fatigue more effectively. One of the most important is planning ahead of time and prioritizing. Planning meaning not just my activities, but my rest as well. That is hard for me because when I am feeling less fatigued, I want to get as much done as possible. However I have found that for me, the fatigue is cumulative and rest periods every day are critical in managing it.
Another important component to managing my fatigue is diet and exercise. I cannot emphasize this enough. And oftentimes, I need to emphasize this even with myself because it is an area that I can easily neglect. I have found a significant improvement in my fatigue levels when I exercise three to five times a week and cut out processed sugar, gluten, and processed foods. The exercise doesn't even have to be much, maybe a fifteen minute walk or a half hour of gentle stretching. I just have to move my body.
I also need to listen to the fatigue. When its here, its here. Yes, there are some things I have to push through, like finishing a shift at work. But otherwise, I listen to my body and give it the rest it is screaming for. I find that most times when I do this, I recover more quickly than if I did not listen to my body and kept barreling through my day.
Lately, my fatigue has been more manageable for me and while I know that how I manage it is a crucial component, I have also been finding some relief lately since being on a steady dose of low-dose naltrexone (LDN) and increasing one of my thyroid medications. I always encourage people to talk to their doctors about checking their thyroid and also exploring any other possible causes of fatigue such as adrenal exhaustion, etc.
What techniques and management strategies have you used to help manage your illness related fatigue?
Sunday, March 1, 2015
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
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
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
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
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:
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 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.