For Everything There is a Season

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

Category: autoimmune disease (Page 7 of 19)

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.

Whole 30 Autoimmune Protocol

January 16, 2014 / / 3 Comments

I feel like revamping my diet is a constant and ever evolving process. I don’t mean “diet” as in a weight loss program, but in terms of using proper diet to treat my Sjögren’s syndrome. About a year ago, I embarked on a Paleo eating plan, with the first month dedicated to the autoimmune protocol of the Paleo plan. The autoimmune protocol of any plan is super strict and is not even a diet. You can find an excellent explanation of the autoimmune protocol (AIP) HERE. It is a thirty day elimination period of the foods that are most thought to cause inflammation in the body. Due to a death in my family on Day 2, things did not go well. I know it is an excuse, but the amount of stress I was under was off the charts. I did however stick with the Paleo plan for the first half of the year, and I had some good results from it when I was compliant: most notably less pain and fatigue.

Things pretty much went to hell for me in the nutrition department (I like that word better than diet) when I went to Disney for my honeymoon. We came back the beginning of October 2013, the holidays came, etc. The worse I ate, the worse I felt. At first, it wasn’t noticeable because I was on a hefty dose of prednisone to quiet down some symptoms prior to my honeymoon, but as I started weaning the prednisone, it became apparent that my  food was affecting my health.

Part of the issue is not autoimmune related at all. At least I don’t think it is. Once I came back from Disney, I began to realize that some of my food issues had resurfaced. By “issues” I mean addictions to certain foods. I know being on the prednisone didn’t help with this, but things seemed to be worse. I was constantly craving processed food that were laden with carbs, sugar, and the such. This was not a new issue for me, but it seemed like now, the more I ate these foods, the worse I craved them. My weight creeped up and up and I felt like I was no longer in control. I know part of the carb cravings was related to the prednisone and that a lot of the foods I was eating are MADE to be addictive (i.e. McDonald’s), but at the end of the day, it was still my decision to eat them. They were my choices and I was making some poor ones at that.

Meanwhile, since coming back from Disney, I had started exercising on a regular basis because I was on prednisone and that afforded me the ability to be able to do more with my body. The exercise actually helps my autoimmune symptoms, but I began to wonder about how much better I could feel if I reeled in my diet again. On a blog I follow, I read about the book: It Starts With Food by Dallas and Melissa Hartwig. This book changed my life. Seriously.

It Starts With Food talks about the Whole 30 eating plan which is basically a Paleo diet with some tweaks, mostly eliminating any type of sugars (except in fruit and veggies). The premise of the whole plan is that you need to eat whole foods in order to optimize your body’s health. While Paleo talks about how our ancestors ate as a premise for the eating plan, the Whole 30 talks a lot about the effects that these processed foods have on our bodies. It is a no-nonsense approach to getting healthy. No excuses.

I decided that I was going to do a Whole 30 (meaning you do the plan for 30 days with absolutely no cheating) and I was going to step it up by adding in the autoimmune protocol of the Whole 30. My plan was to start the day after Christmas but I had my first race, a 5K, scheduled for New Year’s Day and the authors suggested not starting a Whole 30 before any big physical event, because the plan itself can take a toll on your physical body the first two weeks. As much as I HATE starting a new lifestyle change on New Year’s, that was my start date.

Today is Day 16 for me. I will be honest, most of the 16 days have been pure hell because really, this is HARD!! I have a few expletives for it, but I will try and refrain…for now. Being on a Whole 30 AIP means I can eat only certain foods for 30 days and then I can start to reintroduce some healthy foods I omitted over a period of a few months to see if my body can tolerate them. By reintroduce, I mean like eggs, nuts, and seeds….not pizza, soda, or bread.

What I can eat: meats (chicken, turkey, beef, fish); all vegetables except eggplant, potatoes, tomatoes, and all forms of peppers except black pepper; fruits; and healthy fats such as coconut oil and olive oil. Oh, and spices that are not seed or pepper based. That one gets tricky!

Yeap, that’s it.

No grains of any sort, no dairy, eggs, nuts, seeds, sugar, artificial sweeteners, sauces, additives of any type. I am sure I am forgetting some things, but you get the gist.

And this means I cook, ALL THE TIME! It is insane how much I have used my kitchen lately.I try to double up my cooking so I have something to eat for breakfast and lunch the next day, but when you are making your own salad dressings (olive oil only!) and cannot grab a protein bar when you are starving after a run, it gets tricky…and time consuming. Cheating is not allowed because even the slightest bite of an inflammatory food can have a negative effect on your gut, which is thought to be the primary source of injury in autoimmune illness. Eating out is next to impossible although I was able to twice at Red Robin. I knew they were probably cooking in forbidden oils such as canola or safflower oil, but I didn’t think that would be enough to trigger me. And, I had to protect my sanity.

The first ten days or so was a nightmare for me, physically and emotionally. I had physical withdrawal symptoms, despite having had cut out gluten and dairy after Christmas. These symptoms included dizziness, dehydration, increased fatigue, headaches, and joint pain. For several days, it felt like my blood sugar was dropping several times a day. I stopped doing all exercise for the first week until I felt that things were more stable. I became extremely moody and restless as I started to crave all the unhealthy foods I was previously dumping into my body. Honestly, I couldn’t even be in the same room as some of my trigger foods such as pizza, chocolate, even gluten-free bread!! I even went as far as asking my husband to take some Kit Kats we had gotten at Christmas to work with him. He forgot. I was home alone. I tossed them in the trash. Swear to God.

Things have gotten better though. The physical symptoms went away and despite weaning down my prednisone from 20 mg/day to 10 mg/day over the course of the past few months, my autoimmune symptoms are actually improving. The improvements have not been that drastic yet, except for my sleep. I am sleeping like a rock most nights for one of the first times in four years. I even dream now! And as anyone with an autoimmune illness knows, more sleep=less symptoms. Despite increasing my running mileage, most of my muscles and joints are pain-free on most days.My energy level has improved and despite having some mild respiratory issues around the holidays, my breathing is now 100% fine. No migraines and my mood is on an even keel. I have not noticed an improvement yet in my Raynaud’s or dryness issues and I would say that my dryness issues are even a bit worse. But it is January in New England; that is what always happens to me.

The past forty-eight hours has seen a dramatic improvement in my food cravings. This has been quite the blessing. Although temptation is still a challenge more times than I would like, I find that I am not thinking about food so much. I have also become quite a better cook over the past two weeks! It feels freeing to feel in control.

I don’t know what the next few weeks are going to bring, but I am cautiously optimistic. While I do not think that this eating plan will likely “cure” me of Sjögren’s, I am hopeful that it will help control my symptoms enough to further improve my quality of life. Because as hard as this Whole 30 AIP plan is, it’s not half as hard as living with a debilitating, chronic illness.

Running My First Race

January 3, 2014 / / 26 Comments

The start of 2014 was very exciting for me.

Back in early October, when I returned from our honeymoon in Disney, I decided that I wanted to try running so that someday, I could run one of the Disney race events they have every year. I had been taking a good dose of prednisone (20mg) and figured if I ever was going to try running again, this would be the time. I had attempted running a few years ago for a month or two and had to stop because of my joints. In addition to the desire to run through Disney, I was also inspired by two online friends I had met, Lucy and Heidi, who both also have Sjögren’s and have either participated in races, or were planning on doing so.

As I have blogged before, I took the running thing seriously, especially because of my joint, fatigue, and respiratory issues. I read a lot of books, magazines, and online articles about strengthening exercises and I made sure I did regular yoga and Pilates classes, which greatly helped my running and overall health. Sometime in October, I started the Jeff Galloway Easy 5K training program. I highly recommend it if you are a new runner. It is a run/walk program that gradually builds up your stamina and endurance. I found the run/walk concept (I do a 1min./1 min. ratio) to be much less daunting than trying to run an entire distance. I also started regularly using a foam roller for my muscles, which has helped me physically in so many ways besides in terms of my running.

My goal was to run a 5K on January 1st; a race called Gordy’s First Race in Westfield, Massachusetts. I figured it was a good way to start the New Year and yet, gave me enough time to complete the entire Jeff Galloway program. The bottom line is, I don’t know how hard running is for everyone else, but it is very difficult for me and I wanted to make sure I was well-prepared. I also knew that by January, my prednisone dose would be significantly less and that fact worried me a little bit.

Getting race ready!

New Year’s Day was the day of the race. I was doing OK from a physical standpoint, but sleep was hard to come by the night before; not an unusual thing for me unfortunately. And the closer we got to Westfield, the more nervous I became. What on earth did I think I was doing?? A 5K race is not meant for an overweight 40-something year old with severe autoimmune issues. Or so I thought. My husband and I drove to Westfield, got our race bib numbers, and spent some time warming up by jogging/walking for a few minutes. My brother, Dennis, also was running the race with us. By this point, I was hyped up on adrenaline.

Pre-race: my husband, me, and my brother.

I have to say, there is nothing like the atmosphere of a race. I would guess that there were about 200 runners present; some were doing a 5K and some a 10K. I thought it would be better to start at the back of the pack because I am so slow and because I do a combination of running and walking. I told my husband and brother that I wanted them to not worry about running with me and see how well they could do, since they are both in much better physical shape than I am in. It was pretty cool that I then heard someone shouting my name. I looked over at the spectators and there was my mom who had showed up to cheer me on!

Off we went and within about a minute or two, the ENTIRE pack was way ahead of me, except for two women behind me. I suspected that this might happen because I had checked last year’s results and most of these runners appeared to be very fast! I tried to stay focused on my breathing and my stride, but all of a sudden I was faced with one of several hills that occurred the first half of the race. Although I had looked at a course map beforehand, I was surprised by the incline.

This is where I panicked a bit and totally lost focus.
I actually considered turning around I was so panicked.

The problem with panic is that is increases your heart rate and breathing, which for someone like me, who already struggles with that, it makes things a lot worse. It did not help that the temperature was about eighteen degrees and I was running into the wind. That’s what happens when you sign up for a January race in New England!!

As I tackled the hills,I found myself needing to do much shorter intervals of running/walking then in my training runs. I had done a little bit of hill running in my three months of training, but apparently not enough. Then I saw some people standing outside their homes on the race route. And I saw the traffic cops. They were cheering me on. Here I was running by myself (I kind of regretted that!), with nobody around me because I was so behind everyone else, and they were all cheering me on. It helped, a lot. I tried to settle myself down and decided that no matter what happened, I was finishing this race. I worked so hard for this. This was MY race; not anyone else’s. I was only in competition with myself.

Lone ranger!

Because the race was up and back, people started to run towards me on their way back to the finish line. I was not even halfway yet, not even close. I saw my brother run past me and then my husband. He had my asthma inhaler on him and I thought it might help if I took another hit. That was a HUGE mistake. What was I thinking?? All it did was jack up my heart rate some more and didn’t help my breathing. Live and learn.

My husband then decided, against my protests, to do the rest of the race at my side. He wasn’t taking no for an answer. I felt bad because he could have finished well, but to be honest, he was a huge help. As we hit the halfway mark and turned around, other runners would race past us. It was probably obvious that I was struggling, but several of them yelled out words of encouragement to me as the sped past us.

“Keep going!”
“You’re doing great!”
“You can do it!”

It was simply amazing. Let me tell you, if you are a good runner, are experienced at races, and see someone like me struggling, yell something out to them. NEVER underestimate the power of a few words. You never know the challenges someone else is facing when they are attempting to do something like this. So to all those strangers who rooted for me, thank you. I am forever grateful.

Not too long after we started back towards the finish line, I realized that I forgot to check my watch  to see what my pace was. This was the whole point of wearing one; that’s how out-of-sorts I was compared to my training runs! I looked down and realized that I was running a 14-15 minute mile, which was even better than I expected, especially with those hills. I was doing fine if I stopped comparing myself to everyone else. I also came to realize that the two women who were behind me when we started never turned around, which meant that they were doing the 10K and I would probably come in last for the 5K. I put that out of my head and just concentrated on one foot in front of the other.

I knew the finish line was coming and it was important to me to finish strong, but my lungs were on fire. And I mean fire!! My legs held up pretty good, but those lungs…geez. The traffic cops kept cheering us on. The elite runners kept shouting words of encouragement. My husband kept reminding me what I was supposed to do, like breathe. We rounded the corner that led into the front of the school where the finish line was. I knew that I was overdoing it and probably wasn’t getting enough oxygen at this point, but I saw the finish clock all lit up and the banner. I saw my mother and brother at the finish line and honestly, I would drop to the ground at this point before I would stop running.

My goal was to do the race in under 50 minutes. My official time was 45:13. By far, my best time ever, by several minutes.

Finish line!

I will admit, I wasn’t feeling too hot, but I walked around, drank a ton of water. I don’t have any other races to compare this to, but I thought Gordy’s Race was very well run. There was plenty of pizza, hot chocolate, and water afterwards, although since I was starting a new eating plan to help with my autoimmune issues, it was just water for me. We waited around for the race people to post the final results to see if I indeed came in last like I suspected.

I did not come in last. I came in second to last.

Guess who came in last?
My husband.

I was so focused on trying to finish without passing out that I didn’t realize when we crossed the finish line, he had put me in front of himself; just so I wouldn’t be last. Honestly, it wouldn’t have mattered to me at that point. I was so proud to just finish. But the gesture was so unbelievably touching that when I was posting a Facebook update from the car on the way home, I started bawling like a baby. He’s my biggest fan. My biggest champion.

I woke up the next morning feeling different about myself, mentally. The physical effects were still lingering a little, mostly the asthma stuff because really, asthmatics probably should not be running in cold temps like that. But mentally, that was a different story. I felt like I had accomplished something huge. Something that some people told me I would never be able to do. And I did it. Who knows what else I might be able to accomplish physically over the next six months or so. Maybe a longer race. Maybe a faster race. Maybe I can get off prednisone. Maybe I can go back to work.

Running this race, with all those other athletes, made me feel like more than my illness. Instead of cursing my body for what it can’t do, I could feel proud of it for what it can do.

Completely life-altering.

Looking Back And Looking Forward

December 31, 2013 / / 2 Comments

I had a moment yesterday. Like one of those moments (actually, several moments) where you realize something important. I was lying on an exam table, having an abdominal ultrasound done. It wasn’t a big deal, minus the fact that the tech was specifically looking for my gallbladder and that little booger was tough to find. I go for ultrasounds every several months to check a previously suspicious growth that is attached to the gallbladder.

I first found out about this growth in November 2012 when I was hospitalized with dehydration, vomiting, and stomach pain. It ended up that the issue causing my symptoms was an esophageal motility disorder, mostly likely related to Sjögren’s. I also had severe GERD. When they did a bunch of tests to initially find out what was going on, a surgeon appeared in my hospital room telling me that by the way, they also found this thing on my gallbladder that shouldn’t be there and although gallbladder cancer is very rare, we might have to consider surgery to remove the entire gallbladder.

More tests and investigation ensued and the end result was that this “thing” had showed up on a CT scan three years prior. I don’t know if the doctor at the time read the report, but I was never told about it. Yes, you have to love our health care system. But truly, it was good news because by comparing the scans, it was obvious that the growth did not change at all in size or shape during those three years. That made it highly unlikely that this was a cancer of any sorts because to be frank, I would probably be dead. After months of discussion and more scans, it was decided that this was likely something I was born with and since I had no specific gallbladder symptoms, we would just monitor the growth.

At this point, I feel that the continued scans are a bit overkill, but I respect this particular specialist and trust his judgment. I have to tell you though, it was a horrible time for me. I was dealing with the symptoms at hand and this gallbladder scare on top of it. My mother-in-law was very sick at the time and honestly, I don’t even know how my husband and I got through it all.

This brings me back to the exam table yesterday. The tech made a comment about how much easier it was for her because I was good at taking very deep breaths. She jokingly said that I must have a lot of experience doing so.

True enough.

Then this realization hit me. I have had significantly fewer medical appointments over the past few months and the impact of that has been huge. Overall, I am much calmer about my health issues. My last big crisis was over the summer with bladder issues, but things have been quieter since September. I am very well aware of the fact that this is when I started prednisone again, but I don’t think the reason is that important. Although I continue to struggle every day with different Sjögren’s related issues that significantly impact my life, I am not in crisis mode. Looking back over the past several years, there have been weeks and months where crisis mode has been the norm around here. I do not exaggerate when I say that I have had weeks that have included anywhere from seven-twelve medical appointments in one week. How do we live like that? How do we get through each of those dramatic and tedious weeks to the other side? One step and one day at a time.

So as my day continued yesterday and through this morning, I reflected on all of this. Sjögren’s is so unpredictable. I could write this today and be in the hospital by the weekend with some unsuspecting complication. But, I have gotten better about not worrying when the next medical crisis will hit and rather, I have tried to fully live the day I have in front of me.

Taking one day at a time has served me well this year. To say that 2013 was a big year for me would be an understatement. I got married (with a two day wedding!), traveled to Disney for our honeymoon, conquered my fear of heights with parasailing, ran a very successful Kickstarter campaign, and published my first book. I reevaluated a lot of my relationships. I made new friends and lost some friends as well. I have learned a lot about myself and about other people. I have rejoiced. I have mourned.

That’s a lot. And I did some of this in between medical crises, and sometimes even during them. I think that is why I no longer make New Year’s resolutions: my life is a constant resolution. To be healthier, stronger, more relaxed, more patient, and more tolerant. I consistently work on finding ways to be a better and stronger person. Sometimes it means learning how to say no. Sometimes it means saying yes. This year in particular, it has meant setting boundaries with other people and learning that no matter who it is (i.e. not just my partner), we all deserve to be treated with respect, kindness, and love. Becoming a stronger person this year has meant that I have learned to respect where someone else is at, to forgive, and to truly move on. Most importantly, I have continued to just be myself and not worry about what people think of that.

So while I am I am excited to see what the journey of 2014 is going to look like, I will miss 2013. I am grateful for all the beautiful moments and the growth that I have experienced. However I must say that part of me is looking forward to not having so many big events and instead, just savoring the little pleasures and joys of each day.

One day at a time.

 *********************************************************************************

Do you make New Year’s resolutions and have you made any for 2014?

« Older posts Newer posts »

© 2025 For Everything There is a Season

Theme by Anders Noren — Up ↑