Thursday, March 27, 2014

Thoughts and Ramblings...Literally.


This entry is an expanded version of a Facebook status update I was writing for the Thoughts and Ramblings Facebook page and then I thought to myself, "Self, this is why you have a blog...just for this type of thing!"

I have gotten into what I think are two bad writing habits over the years:

1. Being overly cautious about not offending people or making people upset with my writing. I mentioned this in an earlier entry and I am working on it. Apparently, I have a bad habit of doing this in my regular life as well, but that is coming along much faster.

2. Thinking that every blog entry I write has to be a well-crafted work of art. Since my average blog entry takes me anywhere for one-three hours to write, edit, etc., this habit does get in the way of production, not to mention creativity.


So, my "Thoughts and Ramblings" for today:


1. I desperately need fresh air in my house. It has been buttoned up too long. I cannot stand how dusty it is, but since this week (thanks to a brutal allergy testing session) has triggered several asthma attacks and an allergy attack that has now lasted two days, dusting is out of the question. However, I did turn down the heat and opened up the slider. Yes, it is about thirty degrees out. Who cares? Well, my husband might when he sees the electric bill but seriously, it is almost APRIL.


2. I have decided that my favorite room in the house is our dining room because it gets the most light, is very peaceful in the morning, and where I sit is directly in front of our "photo wall." By the way, there is a big gap on the right because one fell down this morning. That has been a happening trend this week: things falling down on me.



3. While trying to get my tax stuff together last night, I calculated that twenty percent of my income (just mine, not ours) goes to medical expenses every year.  That's a lot. Then I realized that there are people in this country with no medical insurance at all and who cannot even access medical care. I decided I should stop whining about it. So there, I'm done. Although....I could go on and on about Obamacare, but really, who wants to listen to that?!?


4. I could write a whole blog entry about our upcoming trip to the SSF conference in Chicago at the end of April, and I probably will at some point. It's been on my mind a lot. I am thrilled to be going and am looking forward to it. But...as it gets closer and I come down more and more on my prednisone dose, I am concerned about the trip itself. I hate the fact that I even have to think about it, but then again, it I didn't have Sjögren's, I wouldn't even be going.



5. I am feeling like a bit of a failure lately in the whole book publishing department. Not because the book isn't helping people or selling, but because I always feel like I should be doing more in regards to the marketing of it. It is very hard to self-publish and market a book about an illness that you, yourself, have. It's kind of ironic actually. I read these blogs and stories about people doing all these book tours for their newly released books and I feel that that is what I should be doing. What is it they say? Comparison is the thief of joy? And honestly, I have been working hard on it, but after 2 1/2 years at this book, I am tired. I miss the time it takes away from my writing, not to mention a lot of other things. And to be honest, it doesn't pay the bills either....at all. I'm sure this is very bad to talk about on a public forum. I don't want you to think I regret the book or the self-publishing at all because, I don't. It is one of the best things to ever happen to me in my entire life, but I am sitting here wondering where I draw the line and when to let myself continue on to whatever is next...if anything.



6. In case anyone missed it, I absolutely and unconditionally love my dog, Molly. So last night my husband comes home from work and I was in my office downstairs working on my tax stuff. I hear the pounding of feet coming down the stairs and they were much louder than just his feet. Molly doesn't like to spend time downstairs; I think the stairs are harder for her now and that is part of the issue. When she does come downstairs, she self propels herself down those stairs like a friggin' freight train. So my husband comes around the corner into my office and who bolts in right ahead of him, but Molly, with her Bumble in her mouth. She got this stuffed Bumble for Christmas from a friend of ours and hasn't willingly left to go anywhere without it since. It was the first time she brought the Bumble downstairs and it was funnier than hell. You'll have to trust me on this, because I have no photo.



7. Last one. It's bothering me a lot lately how self-serving people can act. Well, it bothers me on a regular basis, but more so lately. Typically, its just a fleeting thought here and there. It makes me stop and put myself in check and make sure that I am not behaving in the same way, because I know we are all guilty of it at some point or another. Myself included. I get that whole "take care of yourself first so you can care for other people" thing; I really do. But lately, I just want to go stand somewhere, like the center of my town common, and scream at the top of my lungs: "It's not all about you!"

Luckily for me, I am surrounded my enough selfless people that I see the good in the world and keep from making a fool out of myself; at least in that realm.



That's all I got for now.
Comments and opinions welcome. Just be gentle with me this week, I am feeling extra sensitive.  :-)

Tuesday, March 25, 2014

Crossing the Finish Line


This past Saturday was an event I have been preparing for over the past five and a half months, since I started running last October: the Holyoke St. Patrick's Road Race. 6.2 miles. 2 1/2 miles of it uphill. And, they are big hills!


This is a bit of a race report mixed with my observations on what it is like to do this type of event. I don't know the specifics of how large other races are, but this particular race had a lot of people, reportedly over 7,000 runners. Somewhat intimidating to me. As I have mentioned in a previous blog entry, my husband was running the race by himself and my friend, Heather, and I were running together. It was such an incredible experience that it has taken me a few days to get my thoughts together before I write them down.




The City of Holyoke, Massachusetts takes St. Patrick's Day seriously. The parade, which is the day after the road race, is one of the biggest in the country, maybe even the biggest. So of course, the road race is a big deal as well. People dress up in green clothes, costumes, and all kinds of other garb for the event. We were no exception. That is the reason I have pushed so hard, as a new runner, to try and get myself ready for this year's race, rather than waiting a whole year to compete. The race is just fun. While I have been training consistently, I knew another year might have made a big difference in the difficulty of running this race for me. However being as inpatient as I can be, and honestly, none of us knows what can happen in another year, I knew I had to attempt the race this year.



 We got to the race area pretty early because of the high volume of traffic and people who were expected to be in attendance. Because for as many runners as there were (there was also a walk), there was probably just as many spectators lining the streets. After about two plus hours of waiting, stretching, and waiting some more, my husband went to his starting line up position and Heather and I went to ours, in the very back. This year, the race was starting in waves and we were going to be the last group, besides the walkers, to depart from the starting line. There was definitely a feeling of excitement as we heard the gun go off, indicating that the first wave of runners was on the move.


Heather and I had a plan to start the race walking for a few minutes, mostly because at my last race, I panicked and started off much too fast, causing me to have a difficult time. The other part of our plan, since we are run/walkers, was to speed walk the hills and run as much of the rest as possible. As we started off across the start line, I was shocked by the amount of people lining the barricades, rows and rows deep. I started to get a little panicky having all these people watching me.


After a very brief walk, we did start running. I tried to not be too conscious about how far back we were. I just kept reminding myself that pacing myself was the key to us crossing the finish line. However, it was hard to ignore the ambulance that was very closely trailing behind us. Being someone who has so many medical struggles and has recently spent time in an ambulance, I found this a bit disconcerting. I just kept reminding myself, "pace yourself", pace yourself."


Since Heather and I have been training together for months, we have developed a good pattern of communication while running and I think that really paid off during the race. There were points where she was struggling more than me and other points, especially towards the end, where I was struggling more. But overall, we stuck with the plan and mile by mile, I realized that we were absolutely going to finish, and likely at a faster time than we thought. According to my running watch, we were averaging about a fifteen-seventeen minute/mile walk and about a twelve-fourteen minute/mile run. I had thought that if we finished the race in 1:40-1:45, I would be happy. Anything under that would be an even bigger accomplishment. By my calculations, we had a shot at finishing at about 1:30. We had discussed during one of our training runs that 1:30 would be the icing on the cake, so to speak.



The experience of this race is one that I will never forget. It definitely had its challenges: leg issues for Heather, a previous injury for me, nausea after my first water stop when I tried to drink water, and WAY too many hills! That all being said, overall, it wasn't quite as difficult as my first race on New Year's because I had more months of running behind me and the temperature was at least  thirty degrees warmer. My family turned out to cheer us on at two different spots along the race course and it is still amazing to me how many complete strangers cheered us on along the way. I'm not talking about cheering statements like "keep going", but rather comments like: " you can do this....you're almost there...you SO got this...last hill." Comments that actually spurred us on when things got tough. There were people on their front lawns playing bagpipes, Irish music being blasted from people's homes, and LOTS of clapping and yelling. The kinds of things you need when doing your first 10K race.




The three of us did finish the race. My husband came in at just under an hour (59:57) which was fantastic for his first 10K. When Heather and I turned the last corner to head towards the finish line, it was all I could do to keep moving and not only was I moving, but I was running. I made a promise to myself when I started running, that I would NEVER walk across a finish line. No matter how difficult running is for me or how tough a race is, I would always run my last quarter mile. I would always be a strong finisher.


It felt quite surreal when Heather pointed out how close we were to the finish line. As we got closer, we heard the announcer say our names on the loudspeaker.That is the advantage to finishing towards the end of a race, we heard our names announced because we weren't in a pack with a bunch of another people...it was just her and I. Usually the only time my name is ever announced, I am in a medical appointment waiting room. This was a nice change of pace!



Right before we crossed, I looked up at the time: 1:40. I was slightly disappointed, although I shouldn't have been. But I did think we had done a little better than that. It didn't matter though. We had finished. I, a person with a life-altering chronic illness, had accomplished something that I never before thought possible, even when I was healthier.


The three us spent some time in Holyoke rewarding ourselves with some hard-earned beers (not the gluten-free variety, either) and during that time, I got a text message. The company that monitored the race, Racewire, texts your time after the race. I never even knew that was going to happen. And then, a sudden realization hit when as I was reading the text. Our 1:40 time on the finish line screen did not account for the fact that we were in the last wave of runners to start, delaying us by about ten minutes. Our actual finish time was 1:30:56! We did achieve what I previously thought was unattainable. Was a 1:30 finish time a remarkable feat in the world of competitive racing? Not by any means and I know that. But that doesn't change the fact that for us, it was truly a remarkable feat.


The aftermath of running the 10K has been difficult for me; a lot of it has been ignorance and neglect on my part in post-race recovery. More of it has been my usual daily physical struggles exacerbated by putting my body through an unusual physical challenge. And finally, part of it has been a nagging leg injury that is totally ticked off at me for running all those miles. But as uncomfortable as I am, it still doesn't feel as bad as my worse day as a Sjögren's patient because mentally, I am stronger and I feel like I have accomplished something that I was never supposed to do.


My only question now is: when is the next race?


Tuesday, March 18, 2014

The Power of Running


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.

Friday, March 14, 2014

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


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.

Friday, March 7, 2014

I Am Still Here!!



I know, I know....I have been very neglectful of the blog. I have good excuses, really. The book marketing, e-mail follow-ups, interviews, etc. etc. are part of it. There have been major dramatic changes at my church and I have been trying to be more involved there and functioning as more of a support to my husband since he is a deacon. I started a new job and am working for the first time in five years. Granted, its not many hours, but it has kicked my butt! There's a whole bunch more excuses, but I will spare you for now.


My plan was to do a lot of writing today, but I have physically crashed, my Sjögren's symptoms are giving me a run for my money and I am having a hard time forming coherent thoughts because I am so exhausted...and medicated! But I noticed that it has been a while since I posted and I don't want anyone to think I jumped ship. I do miss writing a lot and I have to start making it a priority.


I am doing better with keeping the blog's Facebook page updated so come on over and visit me there if you'd like. In the search box on Facebook, type in: Thoughts and Ramblings on Life, Love, and Health and then "like" the page.


Meanwhile, I hope you all are doing well and hang in there, Spring is almost here!!