For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

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The Power of Running

March 18, 2014 / / 0 Comments

I just finished my last training run in preparation for a race that I am running (I do a run/walk combination) in four days. The race is a 10k event (6.2 miles) and is the second race I am going to be competing in since I started running five and a half months ago. The first one was a 5k (3.1 miles) on New Year’s and since then, I have been training for Saturday’s race with my friend, Heather. My husband is also going to be running that day, albeit at a much faster pace than Heather and I.

This race is a big deal for me. Two and a half miles of it is uphill and honestly, I have never even ran 6.2 miles in my whole entire life. I have done three miles…four miles….and a one-time five miler, but never more than that. But, I have been consistent with my runs and since I am still dealing with some type of upper leg injury that has yet to be resolved, that is a major accomplishment. Actually, it is a major accomplishment that I can even run at all considering the physical obstacles I have endured and worked through over the past several years. I cannot lie though, I am a little scared. Scared of how my body is going to react to pushing it further than it is probably ready for.

I have been wondering lately how the heck I got here; what fuels me to want to do this running thing week after week. I know a big part of it is the endorphins and how good they make me feel. When I started a new job recently, I took almost a week off from running to try and manage the overwhelming fatigue I was having from going back to work after five years at home and you know what? I missed it, a lot. Running has become my primary way to deal with stress. A much healthier way than eating my way through stress.

So many other aspects of my physical self have improved over the past few months. A few nights ago, I went to scratch an itch on the back of my leg and when I touched my leg, I felt what I thought was swelling. Because of the Sjögren’s, I get all types of weird things that pop up here and there and I am very in tune to any changes in my body. Well, apparently not that in tune because as I felt my leg more thoroughly, I realized what a fool I was. My leg was not swollen or messed up from autoimmune issues…. I had developed some serious MUSCLES in my legs. It still amazes me when I look at my legs. They don’t look like mine at all anymore.

My cardiovascular status has improved significantly. My knees no longer hurt at all when I run and when I first started running, my knees hurt so bad, I didn’t think I would be able to continue running. My asthma has remained stable and despite the fact that I am on the lowest dose of prednisone I have been on in six months, I can run/walk three miles in less than fifty minutes. Not a world record breaker by any means, but a success nonetheless.

I realized something this afternoon though. It was one of those breakthrough moments as I was driving home from our training run. I was crying in the car because of this realization. Aside from all the physical benefits that becoming a runner has given me, I have figured out the one major reason why I love running so much, despite all my constant complaints to my husband about how much I hurt sometimes:

Running makes me feel powerful.

RUNNING MAKES ME FEEL POWERFUL!

When I run, I am not a patient. I am not an illness.

When I run, it is me and my body battling itself, and I always win. Some days more so than others. But the fact that I get off the couch and go, that is me winning.

When I run, I do not feel like the fat girl who was teased in gym class for being so slow and awkward. I feel the strength in my legs and the air racing in and out of my lungs. I am not the awkward fat girl. I am a runner.

When I run, I hear the soothing rhythm of my feet striking the ground.
The sound of power.

Running makes me feel powerful because I am doing what I was told I would never do. It is me defying the odds and refusing to let my illness or my own mind beat me. It does not matter if I am running a twenty minute mile or a thirteen minute mile, me and my body are beating the odds. It may last another week. It may last the rest of my life. But regardless of the outcome of my running life, or even this race Saturday, I have conquered.

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.

Finding Balance

February 18, 2014 / / 0 Comments

I asked readers on my Facebook blog page recently what types of topics they would like to see discussed here on Thoughts and Ramblings. One reader mentioned that she would like to see a blog entry regarding maintaining balance in our lives. This suggestion comes at a time when I need to be more attentive to that than usual, so I figured it is a good topic for today.

I do believe I may have written about balance in this blog before, but I think it was a while ago and to be honest, I don’t have the patience to hunt through four years of blog entries to track it down. I also think that over the past several years, my writing, while not perfect, have improved dramatically so I am going to give you a 2014 perspective on the issue.

To start with, this topic has been on my mind a lot lately because of my own life and just as importantly, the lives of people around me. I spend WAY too much time contemplating various things I see go on around me and one issue in particular has been how busy everybody seems to be these days. Busy is not necessarily bad. Busy is good. However for me, there needs to be balance of business and stillness.

I listen to many of my friends and family members talk about how they are occupied every single weekend with all sorts of events, with barely enough time to get in a meal without holding it in one hand, while driving with the other. Kids are shuffled from one sports meet to another, then to girl scouts, then to dance class, then to this, and then to that. Now granted, I don’t have young children, but as a kid, I never was that busy! Sure, I was involved in band, sports (believe it or not!), and Girl Scouts…but never all at the same exact time. I always had downtime to play outside with my friends or to sit around and read my favorite books.

And it’s not just our kids who are kept at a frantic pace. Oh no. We, ourselves, are as well. It seems that a lot of us must constantly be “doing”, rather than “being”. Sure, I know how frantic life can be, but the real question I would ask is, does it always have to be? OK yes, there is work, household chores, children/aging parent/pets to care for, and meals to cook. But what about after that? What gets added to all that, which in turn may jack up our stress levels? Is it because we are afraid to say no when requests are made of us? Is it because we are trying to provide our children with as many opportunities as possible? I would urge you to then ask: is this really necessary? Is it healthy for me and my family? When I think back to my own childhood or listen to what my stepchildren say about growing up with my husband, what I take most from that is not the memories of being here or there, but rather the time that was spent together as a family.

Finding balance in our lives, however, goes well beyond the physical aspect of what we do on a daily basis. It is also mental. It is about managing our stress and what we allow to move in and take up space in our heads. It is about what we deem important and worthwhile. What it is that is worth spending our energy on.

Several years ago when I was dating my husband and in the throes of my autoimmune illness, it became apparent to me that we were spending too much time in our conversations discussing my illness: my symptoms, how I was feeling that day, my thoughts about my treatments, you name it. He never complained about it, but it bothered me. We are never at a loss for topics to discuss and I wanted our conversations to be about more than my physical well-being.

One day we went to a Sjögren’s syndrome support group in Boston. It was our first one and the plan was to do some sightseeing in the city afterwards. I came up with a plan that we could talk about all that went on in the support group for about a half hour and then that was it. No more talk the rest of the day in Boston regarding anything to do with Sjögren’s, the support group, my health, NOTHING! I will admit, it was a bit hard at first because a lot of the time I “think out loud” with my husband. But, we were pretty successful that afternoon and it was such a freeing experience.

Something similar has happened recently. Our church, where we met, is going through a very difficult transition with our minister leaving. My husband, as the head deacon, has incurred a significant increase in responsibility because of this. When he’s home from work lately, he’s not really home. He’s on the phone, on his e-mail, or working on something church related. Meanwhile, I have taken over the church’s Facebook page, something I have taken very seriously, because I feel that this is a critical time to bring people together through social media.So for us, our home life is not balanced in a way that we are used to. As a result of all this and of us trying to support and help each other, I would say that in the past few weeks, 50-75% of our conversations have had to do with our church. And while it is so very important to both of this and is a temporary situation, that is not a balanced way of life.

So today, I remembered about what we did a few years ago in Boston. I looked at him and told him that we needed a church-free afternoon. So we took off for a few hours and did our best to avoid all topics church-related. Not because it annoys either one of us, but because we wanted to enjoy each other and not worry about the rest of the world. It was the healthy thing to do I honestly think it is one of the things we do that keeps our relationship strong.

For me, balance is about doing those things that reduce my stress. I think I have gotten much better at it, although that has not always been the case. I have gotten better at it because I was forced to by dealing with Sjögren’s syndrome. I have to rest. There are no two ways about it. That being said, I do sometimes push myself harder than maybe I should, but the reasons have to be pretty convincing.I have learned to say “no” and to not spend my energy on situations, or people, that knock my mental and emotional balance out of order.

I have a list of things in my head that are critical for me to do on a regular basis outside the norm of every day living (i.e. eating, showering, etc.). Those things are: writing, playing with my dog, running, and reading. If I do not do all those things on a weekly basis (OK, the dog thing needs to happen on a daily basis!), then I know I am out of balance and need to change something, Those are my creative and stress-reducing outlets and if I am too busy to fit them in, then….I AM JUST TOO BUSY! I know that my health will suffer and then I am in serious trouble. Now obviously, the amount of time I spend on each varies from week to week or day to day, but when I am doing them all every week at some point, I am more balanced. I am more centered,

I don’t pretend to have all the answer regarding living a balanced lie, so I am curious as to what your thoughts are on the matter and what works for you.

Meanwhile remember to breathe…..slow down….be in your moment.

Where You Can Find Tales From the Dry Side

January 30, 2014 / / 0 Comments

I have been getting a lot of messages lately inquiring about where to purchase Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren’s Syndrome. Not everyone likes to shop online or has an Amazon account and I figure this is a good opportunity to be passionate about the retail places that have been so supportive in carrying the book.

1. The Sjögren’s Syndrome Foundation: I mention the Foundation first for a reason. They make a profit on every book sold through their bookstore or at their conferences, whether you are a member or not. However if you are a member, you can purchase the book for an unbelievably reasonable price of just $10. And because I have Sjögren’s, monies made by them to go towards research, etc. is very important to me.

2. Broadside Bookshop: This great independent bookstore is in Northampton, Massachusetts. I have a passion for local bookstores and this one in particular is a favorite of mine. Even if you don’t live in the Northampton area, it is worth the drive. Well, within reason that is! They have a wonderful selection and their location in downtown makes for a great afternoon.

3. Booklink Booksellers: Another great independent bookstore also located in downtown Northampton where you can find Tales From the Dry Side featured in the local authors section at the front of the store.

4. Barnes and Noble: You can find Tales From the Dry Side in their online store, but I recently found out that the stores are going to carry it at well. This is dependent on if the buyer for your particular store has purchased it for the shelves so if you do not see it, ask for it. You can also download it for your Nook via their website.

5. Amazon: What I like about Amazon is that they offer a Kindle version of the book and that may be more feasible for people who have economic hardship. I have been quite surprised by the Kindle sales.

6. Outskirts Press: Outskirts Press is my publisher. They offer a great deal. if for some reason, you want to order 10 or more copies of the book, you are discounted 50% on each book. That’s a whole lot of savings!

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