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Category: support groups

My Sjögren’s World

February 7, 2017 / / 11 Comments

It’s been a while since I’ve done a Sjögren’s blog update. That is both a good thing and a bad thing. Good because it means I have been somewhat successful in putting some mental distance between me and this life altering illness, but it is also bad because I am a firm believer in connecting with other Sjögren’s patients and sharing our insights into how to live as well as possible with Sjögren’s.

Recently, I was asked by the Sjögren’s Syndrome Foundation to be part of a group of Sjögren’s patients piloting a new patient website message board. I have checked out other patient message boards, Facebook groups, etc., but I have only really found myself connected to one other particular Facebook group called Sjögren’s Sisters (if you need help finding it, send me an e-mail or message me on Facebook). So, I was really curious about this new project.

I enjoy doing volunteer type stuff for the SSF, but oftentimes I run into problems with committing physically to projects. Kind of ironic, isn’t it? You want to help the non-profit that does good for your illness, but your illness holds you back. But this project is time limited and I never have to leave my couch or bed to help with it. That’s a win for me!

The project has linked me up with eleven or so other Sjögren’s patients and we exchange information regarding living with our illness and the various challenges that come with that. It’s such a great resource. We are still in the trial phase and once we go live, I will definitely share the information on this blog, so stay tuned.

The project couldn’t have come at a better time for me. Sjögren’s has been overwhelming me lately. My body has been overwhelming me lately. And by lately, I mean for about six months. I am experiencing so many symptoms lately and I don’t even know for sure which are autoimmune related and which are not, although my guess is, most of them are related somehow, some way. Because of all the symptoms, I have had to cancel out on commitments a lot more than usual and while I can be a homebody as much as any introvert, I am spending way more time at home and in bed than I would like. Isolation can be a killer for sure.

So this is what has been going on lately in my Sjögren’s world:

Last April my rheumatologist and I decided to try a medication called Orencia. For those of you who don’t already know this, Sjögren’s syndrome does not have a cure. It doesn’t even have any treatment designed to treat it. Instead we have to depend on medications used for other autoimmune illnesses and then pray and hope that we will be lucky enough to have one of them help us.

Orencia (abatacept) is a biologic medication often used to treat RA (rheumatoid arthritis). RA and Sjögren’s have several symptoms in common. For me, the symptoms I needed the most help with at the time were joint/muscle pain and fatigue. I had to get an insurance prior authorization to do the injections at home, but then we found out that my “copay” was going to be $1500/month. $1500!! We then decided that I would drive the four hour round trip to Boston every month to receive an IV infusion of Orencia instead. Cost to me: $30 for gas, tolls, parking, and water. After the first few months of doing this, my local pulmonologist agreed to oversee the infusions at my local, community hospital so thankfully, my commute has gone from four hours round trip to one hour.

I am very medication sensitive. Right after the end of my first infusion, I did have a minor reaction but since then I have had no adverse effects. This is highly unusual for me so I was determined to give this medication a fair shot.

I did notice some improvement about three or four months after starting the infusions. However in the past few months, I have been on and off the fence about how well it works for me. When I saw my rheumatologist right after Christmas, she thought it was helping because my joint swelling was pretty much gone, but I had also just finished three weeks of prednisone so it is hard to say for sure. I do think on most days, Orencia has helped with some of my joint pain, especially in my fingers, wrists, elbows, knees, and toes.

It has not helped my fatigue though and that is where I am really struggling right now. Fatigue has always been a struggle for me with this disease, but I cannot believe how bad it has gotten recently. At the moment, I do think some of it can be attributed to a respiratory infection/cold that I am trying to recover from, but it is definitely more than that. I am not exaggerating when I say that I have to mentally talk myself through even the most basic of tasks because my body just doesn’t want to move. Showering, cooking, even getting from the bedroom to the bathroom to brush my teeth before bed. It’s not than I am necessarily tired and want to sleep all the time. It’s more like my body is stuck in quicksand or I am constantly trying to swim upstream…the entire day that I am awake. Every task and movement is me mentally rallying myself to just get up and do it; convincing myself that nothing can keep me down. But the reality is, I am down. There ARE times where I just can’t do it.

The biggest problem with this?

The less I am out in the world and the less I can do, the more I struggle with my mood. It’s a known fact that people with chronic illnesses have higher rates of depression and so while I am fighting every minute of the day to work through the fatigue, I am also fighting to keep myself upbeat and optimistic.

Muscle pain, dry eyes, dry mouth, nose sores, headaches, and peripheral neuropathy-like symptoms (foot pain) are a daily occurrence lately. The esophageal motility disorder that showed up a few years ago, and then went away, is showing signs that it might become an unmanageable problem again, but I can’t bear the thought of making yet another doctor’s appointment in Boston. So instead, I try to eat foods that are easier to swallow. This week I go to Boston to get my salivary and parotid glands expressed and a few weeks after that, ultrasound of my shoulders because for some reason, they have been getting more and more painful.

I haven’t been able to sit without being in a lot of pain since August and since December, that pain has progressed to my rectum and you can only imagine what kind of havoc that has wreaked on some of my bodily functions. Originally it was thought that it was an orthopedic issue…nope. Then a gastroenterology issue…nope. Well, at least that is what I have been told. I’m not 100% convinced of either. So now it has been brought up that maybe it IS a Sjögren’s related issue after all, specifically a sacral neuropathy. As I write this, I am awaiting a call back from a neurologist in Boston who specializes in these things. I don’t know if he is going to have any answers. Meanwhile, I keep upping my meditation practice to try and deal with the pain and the anxiety over the fact that the tailbone issues may NEVER go away. By the way, if any of you have experience with that, I would appreciate hearing about your experiences and what helped you, if anything.

So what’s a girl to do? It’s like any adverse situation: you fight or you give up. I’d like to say that giving up is not an option, but we all know it is. Luckily for me, right now, it is not. And honestly, oftentimes the only reason that it is not an option is because I know how much I am loved. And I know that I still have work to do in this world; work that is important. In terms of giving up on dealing with my illness and symptoms, that is not an option either. I know that Sjögren’s can be progressive and I am only 45…that’s a lot of years left for things to get worse. So I need to be as on top of things as I can. I will be honest, lately I have thought about what it would be like to just stop all my medications, all the painful procedures, and all the appointments, but like I said, I am loved and I have important work to do.

For my physical body, I employ as many complementary treatments as I can afford and which work. Yoga, massage, exercise, diet, and meditation are the biggies that I can think of. Even if I sometimes feel that these treatments don’t help me physically, they always help me mentally. There is always the option for me to start up yet another course of prednisone, but I am trying to avoid that as long as possible.

My answer right now is to do the best I can. I work as a substitute school nurse and when they call, I try to go into work as much as I can because at the end of the day, I am more than a patient, I am also a nurse and a pretty good one at that. Yes, it’s usually hell getting through the day and yes, I feel like death after work, oftentimes for days, but I know that for me, work is a necessary part of trying to normalize my life, even if it is only for a few hours or days a month.

I try to put myself in situations where I am helping other people. I volunteer for the American Cancer Society, the Sjögren’s Syndrome Foundation, and my church. Sometimes that means going for months without being able to do anything to help at all, but doing whatever little good we can do in this world is so much better than doing nothing at all.

I work very hard at trying to appreciate what I do have and what is going right in my life. It may not look how I envisioned it to look in some aspects, but in many other aspects, life has turned out so much better than I thought. So I am going to keep trudging along and no matter what, always keep the hope.

The Courage of Illness

February 8, 2015 / / 0 Comments

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.

Support Groups: Not-One-Size-Fits-All

March 14, 2014 / / 6 Comments

Once in a while I post a blog entry about something that I suspect may raise a few brows or cause a bit of a ruckus. Honestly, I think I need to do that more, because I sometimes find myself censoring my writing or what I post in order not to offend people or stir up great controversy. Not because I am afraid of controversy, but rather because oftentimes, I don’t have the energy to defend myself or my position, or even feel the need to do so. Chronic illness does can do that to a person: make them pick and choose their battles because in the course of a day, you must prioritize.  However, I am trying to be more honest in my writing and I guess there is no time like the present to start with that.

What I have decided is that it is important for me NOT to write about something when it is a fresh, emotional topic for me. I need time to get perspective on it, rather than use my blog as a catharsis for every single emotion I may be experiencing. There is actually a topic I would love to write about now that is hot-to-trot in my mind, but again, time will give me better perspective.

That all being said, it is time to talk about support groups. I am going to discuss my experiences here, but I would also like to know what your thoughts and experiences have been with support groups.

My first experience with a support group of any type was in 1996 when I was diagnosed lymphoma. I attended a support group for those with leukemia and lymphoma. I attended the group with my then boyfriend. I lasted (barely) through one session.

I never went back.

I thought because I was twenty-four years old and had cancer, that I SHOULD be at the support group. But after listening to a woman talk for almost thirty minutes about how she was dying from multiple myeloma, I knew my heart couldn’t take anymore. I was scared to death of dying, and listening to someone describe their journey with that process was more than I could handle at the time.

My next experience came when I went to Al-Anon meetings to try and cope with the several alcoholics in my life at the time, most notably, my ex-husband. I tried on this one, I really did, because my marriage was a mess and I was a bit of a disaster. I was ready to find God and have him help me fix myself, because God knows I couldn’t fix anyone else. I tried to work the 12 Steps. I went and experienced several different types of meetings in the western Massachusetts area. I put myself out there a bit and tried to connect with other meeting members.

But, I struggled.

I struggled because the message that I was hearing from other group participants was that God was in control, we couldn’t change the alcoholic, only ourselves, and  we had to go on with our lives regardless of the alcoholic. Well, I agreed with most of that but the problem was, I wasn’t seeing anyone change for the better. One set of parents refused to kick their abusive, alcoholic son out of the house and instead, lived with his tirades. Another woman put up with her husband’s drinking and subsequent infidelity, telling herself that she would go about managing her own life as best as she could. The impression I got was that if we surrendered to God and admitted we were powerless, things would get better.

Well guess what, things didn’t get better for me, and they certainly didn’t seem to get better for anyone else. There was no peace of mind. From my observations (please note that this is MY observation and interpretation only!), for them, the answer was to continue enduring their current circumstances. Not me. I wanted out. I was not sitting in judgment of the paths that other people chose. For me to be stronger and to heal, I needed to leave. That was MY answer. Problem was, I didn’t have anyone in the group I could relate to. Nobody to identify with what I was going through and likewise, I couldn’t identify with them.

Now don’t get me wrong. I am not knocking the 12 Step program. As a matter of fact, I think they ARE the answer for most people. I had an uncle who was a raging alcoholic when I was a young child, but yet, I never remembered him as such. Because by the time I had memories of him, he was a die-hard AA member and recovering alcoholic.He was one of the greatest people I have ever known and I truly believed AA saved him.

But, I was a 12 Step failure.

I did find God though and I did find my way out, with his help…in my own way and time.

Fast forward to my Sjögren’s syndrome experiences. I have gone down many roads looking for support for this illness and in turn, have given a lot of support. I had one experience with a small support group for people with chronic illnesses that was very difficult. I am a big believer that when things don’t work out for you in a particular situation (i.e. a support group), you have to examine yourself and your own actions first. However I was finding that the more time I spent in this support group, the more depressed I was becoming. And while I was struggling with many aspects of having a chronic illness, I was not depressed by any means when I started going to the group. There were multiple factors in this scenario that contributed to this, but the end result was that it wasn’t the right environment for me. It did not feel like a nurturing, safe place where I could learn to live better with my illness.

As an alternative, I ended up seeking out an individual counselor, who had experience in working with people with chronic illness. I didn’t have to see a counselor. I was managing fairly well. However I knew that things could be better; I could be better. I just needed to learn better ways to go about it. I realized something very important about myself: I do better one-on-one than in support groups. That also includes online support group situations. I find that for myself, many online group situations tend to be difficult. While they can be supportive and nurturing, more often than not, I find it challenging to be in a situation that is pervasively negative. For example, if there are a lot of posts in an online support group from people asking for advice or suggestions about a certain medical issue, I’m good. But when there are multiple posts day after day that are filled with people who are verbalizing how bad their lives are and how miserable they are, I struggle. And honestly, I feel bad about that. I feel like I should be able to always be supportive to others in these situations but the reality is, it is not as easy for me to stay as positive as one would think. I have to work hard at it and I have found lately, that limiting my exposure to these environments is better for me. Usually the less I focus on my physical symptoms (within reason), the better I feel. I wish I could say otherwise but again, it is what works for me.

However on the flip side, because of Tales From the Dry Side, I get quite a few e-mails and Facebook messages on a regular basis and with most of these people, I have very extensive back and forth conversations about not only their medical situations, but the difficulties and emotions that come with them. And you know what? I’m OK with it; probably because it is one-on-one and in more of a controlled setting. Not only am I OK with it, but it is fulfilling and helping others helps fuel me for my own journey.

My one saving grace in the support group department (besides the one-on-one interactions) is an in-person Sjögren’s Syndrome Foundation support group in Boston. I think I have figured out the difference for me. The leader, who is a psychiatrist, keeps the group very structured. There is usually a topic and guest speaker. This keeps the session focused. There is free time to talk to other patients and once a year, one of the meetings is more interactive with various round table discussions but again, it is structured. While there is a bit of commiserating about this symptom or that, overall it is an opportunity to learn about our illness and different ways to manage it. Now for some people, this might not be the best type of support group for them, but for me, it works.

I guess the most important thing to this whole post that I am trying to get across is that support groups are not a one-size-fits-all thing. They are composed of people; all human beings with their own strengths and weaknesses. I truly don’t believe that there is one particular way to structure or run a support group and what may work for one, may not work for another. The important thing is to find what works for YOU. It is your life and your health. Support comes in all forms: groups, individual therapy, pets, friends, religion, family, and community. Sometimes you have to look a little harder than you would like to find where you need to be but in the end, it may well be worth it.

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