For Everything There is a Season

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

Category: autoimmune disease (Page 8 of 19)

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?

My Sjögren’s Update (And It’s Not About The Book!)

December 7, 2013 / / 1 Comment

I think it has been a little while since I have posted an update about how I have been doing medically. There are many reasons for that; I was away on my honeymoon, I have been tied up with the book being published, and most importantly, I have been feeling better.

I started back on Plaquenil sometime in August as it was clear that the alternative medicine treatments alone were not doing the trick. They help, a lot, but they were not enough to keep me from having more complications, such as with my bladder. I wasn’t doing terribly, but there was a lot of room for improvement, hence why I went back on Plaquenil. I never thought Plaquenil did much for me in all the years I was taking it, which is why I stopped it in February, but I may have been mistaken on that.

By the middle of September, I was still having a lot of issues with increased joint pain, especially in my shoulders, hips, and hands, swollen lymph nodes that were causing some alarm, fatigue, and this new interstitial cystitis issue with my bladder was still not under control. I had gotten a lot of relief with the bladder issues after going in for surgery to have a hydrodistension done, but my symptoms were starting to return, although not nearly as severe as in previous months. My urologist and I came up with a plan to start bladder instillations every two weeks for twelve treatments…at a hospital two hours away from me. Oh, the joy!

Since I was leaving on my honeymoon for Disney (we were married in May) at the end of September, I decided to heed my rheumatologist’s advice and go back on prednisone, hopefully for the short-term. About eleven days before we left, I started on 20mg once a day of prednisone. Within 72 hours, the change was dramatic. My joint pain was resolved, I had more energy, ALL of my bladder symptoms were completely gone, and within another week, my lymph nodes were back down to an almost normal size. We even decided to hold off on the bladder instillations.

Now, I have a long and intense history with prednisone use which you can read about if you go back to the main page of this blog and click on the prednisone tag under “labels”. It has been quite a while since I needed to be on prednisone for longer than a week and notoriously, I have a lot of side effects which make me want to get off of it as soon as possible. This run with it, initially, was much easier and it makes me wonder if my alternative medicine therapies had anything to do with that. I was getting so much accomplished; I even took up running! I did have to stop my alternative therapy, low-dose naltrexone, because I thought I had too much energy and because both medications give me insomnia, I wasn’t sleeping well. Coming off the low-dose naltrexone helped tremendously.

I was doing so well that it made me wonder if maybe the risk of staying on a higher dose of prednisone long-term was worth it. That whole quality of life over quantity thing and all. I began to realize that if I could stay on this dose, I could probably start thinking about going back to work part-time, or at least on a per-diem basis. After a few weeks, I weaned the dose to 15 mg and was still doing well, and then went to 12.5 mg and then 10mg. Within a week of being on 10 mg, I really began to struggle with my symptoms again so I went back to 15 mg, knowing that I had a rheumatologist appointment coming up soon.

Two weeks before my rheumatology appointment, things began to get tougher for me. I was still feeling good on the 15 mg, but I had put on a lot of weight, despite exercising 4-5x/week. Fifteen pounds to be exact…in less than two months. That, I could deal with. More concerning were the mood swings I was beginning to have. I was struggling (and still am) more than people knew with depressive mood swings, anxiety, and becoming easily frustrated. I tried to keep my head down, but it was wearing on me. The good thing about having been on prednisone so often is that I knew it was medication related, and I have a lot of experience at managing these symptoms. But, it was kind of putting a big damper on that whole “better quality of life” thing. I have had bad prior experiences with psychiatric medications and for me, they are not the answer, so I worked on increasing my exercise, exposure to sunlight, stress management, etc.

I did talk to my rheumatologist last week at my appointment about the side effects. My blood pressure was also elevated and the only time that happens is when I am on larger doses of prednisone. She told me it was time to come down on the prednisone. I will be honest, I was very upset. I explained to her that I tried that already and after much conversation, she made me realize that I came down on the dose too quickly. I have a bad habit of trying to do things my way and you know what? I am sick of it. Historically, I get no benefit from being on less than 15 mg of prednisone but this time, I am doing it her way. Not 50% her way, or 80% her way, but 100% her way. So we are weaning the prednisone down by 1 mg every two weeks until I get to 10 mg and then we wean it 1 mg every MONTH. The goal is to get on as low a dose as possible…or even off of it.

I don’t have any other treatment options at the moment besides my Plaquenil and alternative treatments. We had discussed the possibility of enrolling in a clinical trial for a new medication, but I was disqualified from entering into the study because of my lymphoma and radiation treatment history from seventeen years ago.

I am scared and I am discouraged. I don’t want to go back to feeling the way I did over this past summer, or even last year. The only analogy I can think of is that it is like being blind…getting your vision back for a few months…and then being told you will likely be blind again in a couple of weeks or months. Yes, I know being blind is extremely difficult, but it is the only analogy I can think of to explain the terrible feeling that comes with it. Don’t get me wrong, I am SO grateful for these past two months. I have accomplished much and literally have made the most out of every single day I have felt better. I have had a few wonderful adventures and done things I never thought possible. But at this point, I have to trust the opinion of my doctor and that being on prednisone at the dose I was on, on a long-term basis, is not in my best interest. I have to have hope that maybe I will not backslide too much.

But what is in my best interest? Struggling to get through every day? Going on and off prednisone every couple of months to quiet things down temporarily? Wondering if the back and forth on the prednisone is better or worse for me in the long run as compared to just staying on it? There are no clear answers and unfortunately, my doctor and I do not have a crystal ball to predict the future. So I am hanging on tight to my faith as I begin the slow journey of cutting back my prednisone. I will have to tighten up on my diet, self-care, and likely restart my low-dose naltrexone.

The good news is, I will likely lose some weight and my moods will definitely even out. I am sure my husband will appreciate the latter.

Faith.
Hope.
Courage.

And here we go….

Mentally Becoming A Runner

November 30, 2013 / / 0 Comments

About seven weeks ago, I decided I was going to attempt running. For more of the back story on that, you can read about it here: Running, Sjögren’s, Races, and Disney.

As I mentioned in that blog post, this running thing is a big deal. First and foremost, it is a big deal because of my autoimmune issues, which include problems with my joints, asthma, fatigue, etc. The second reason it is a big deal is because I was told that I would never be a runner due to these issues. I will admit, it has been a challenging seven weeks. The very first time I ran, I thought there was no way in hell I could keep this up, never mind get up to the 3.1 miles needed to run my first 5K. At that point, a race was just a pipe dream.

For the first two or three weeks, I would run only a mile, and then feel like I was going to die afterwards. But also like I mentioned in the previous blog entry, I became very dedicated to doing strength training and other activities, such as yoga and Pilates, which would help prevent injury and make me a stronger runner. This week, I was able to run 2.30 miles; all at once even! It was an amazing accomplishment.

This blog entry is about more than that though. It is about the mindset we have and the self-esteem issues that sometimes haunt us well into our adulthood. Never an easy thing to write about and then present to the entire world in a blog. My thought is that if I feel this way, my guess is there are other people with similar thoughts and fears. It’s important for all of us to know that we are not alone.

During my first few weeks of running, I ran into some significant issues with inner knee pain. I had been fitted for running shoes at a specialty running store years ago, as I wear them for any type of exercise. My current pair was only about two months old. I also had orthotic inserts in my running shoes that an orthopedic doctor suggested earlier this year when I developed plantar fasciitis. I wasn’t sure if the knee pain was from my joints, from being new at running, from being overweight, or what have you. I was getting concerned that I had to ice my knees after every run. I did some research and found out that it was possible that the type of running sneaker I had, in addition to the orthotics, might be too much for me. I then came across the website for a running store in West Hartford, CT called Fleet Feet. Their website had an injury section and which stated that they had a full-time Sports Medicine Director/Athletic Trainer on staff, Stacy Provencher. Furthermore, they offered free injury assessments and could make recommendations based on the assessment. I thought maybe this was a person who could help me, so we set up an appointment.

Here is where I ran into problems. I had been to a running store before and had felt uncomfortable, but it was a few years ago, it was a very small store, and there were no other customers in the store while I was there. But this running store was much bigger and it was relatively busy for mid-week.

I felt self-conscious; and I mean VERY self-conscious.

See, I don’t look like a stereotypical runner. I am overweight, a bit klutzy, and it is possible that the only reason I can run at all is right now because I am on a course of prednisone. As I was walking up the street from my car towards the store, I felt like an impostor. Like I was just pretending to be a runner. Like I didn’t belong.

This is not the first time I have felt self-conscious about running. I have felt the same way when I pass other runners pounding the same pavement as me. Up until last week, I wouldn’t even run with another person, no matter who they were…not even my husband. I thought I looked too awkward and ran too slow. But as the weeks went on, I began to realize one thing: I AM a runner. I work just as hard, probably even harder than most people who do not have autoimmune issues, just to run a mile. However as I walked into that running tore, my new-found confidence evaporated.

I knew they would be doing an analysis of my running on a treadmill. I don’t run my entire run; I use the Jeff Galloway run/walk method. At the time, I was running a minute, walking a minute, running a minute and switching off like that every minute. So essentially, I was only actually running 1/2 a mile. What if I couldn’t run long enough to do the analysis? What if everyone stared at me wondering what the fat girl was doing in a running store?

You know what? I had a great experience at Fleet Feet. Stacy was great and treated me just like any other runner. She analyzed my gait and put me through various tests. We determined that my current shoes and orthotics were fine for now. It seemed to be that the issue was not actually with my knees, but with my hips. I had hip weakness, which directly affects the knees. She also though that part of the issue could be I was a new runner. She gave me some ideas for strengthening exercises I could do and just as importantly, introduced me to the foam roller. I will do a blog entry about the foam roller at a later date because it is just that awesome.

After my assessment with Stacy, I wanted to just pay for my foam roller and leave. But, the thing was, there was stuff I wanted to look at. There was all kinds of neat running gear and I had been wanting to try some specialty running socks to see if they made a difference for my feet. I forced myself to take my time and browse through the store, just like I would if I was at a regular department store. I made eye contact with people. I acted like I belonged there. It wasn’t easy, but there is something to be said for the phrase “fake it till you make it.”

On the drive home from the store, I realized that while I am sure there are people who make judgments about overweight runners, the majority of my fear and insecurity was in my own imagination. Sure I know I am a slow runner and my cardiovascular status could use a lot of improving, but you know what? I am out there. I run when I am tired or when it rains. I run when it is ten degrees out and sometimes as early as 7:30am if it is the only time of day I can get it done. That is what makes me a runner; not the shape of my body or how my butt looks in spandex.

Since my appointment with Stacy and having worked on my strengthening, stretching, and cross training, my knee pain has disappeared. Of course I get leg pain later in the day on the days that I run and boy, do my muscles hurt at times, but I am no longer fearful that I am doing something to hurt my body. I no longer have to ice my knees after runs and I can feel the strength developing in my hips; not to mention how much stronger my legs look and feel.

I do belong in the running world because runners are dedicated and determined. They are courageous. Because I am weaning down on my prednisone dose, I cannot predict how this is all going to turn out for me. What I do know is that in thirty-four days, I will be running  my first race: a 5K on New Year’s Day.

A race to start fresh a new year.
My first full year as a runner.

Tales From the Dry Side Now Available!

November 25, 2013 / / 0 Comments

Well, it would appear that Amazon is really on the ball these days because Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren’s Syndrome is already available for purchase from their website; both in paperback and Kindle formats. There is a link on this blog page, in the right hand column, that will take you directly to the book’s Amazon purchase page. I cannot even tell you how long it took me to figure out how to get that widget on my blog….or even figure out that a widget was what I needed!

The paperback version and an eBook are also available directly from the publisher at www.outskirtspress.com.

The Barnes and Noble Nook account is still in the process of being verified, but I will put out a notice when that is set up for all you Nook fans!

The Sjögren’s Syndrome Foundation has been in contact with me and their plan is to launch the book from their organization, via their book store and newsletter, sometime in February/March, which will be right before their Annual National Patient Conference in April. I will be attending that conference in Chicago in order to do a book signing during the event.

I have had a lot of help today with publicity and marketing from many of my fellow book contributors so a big thanks to them and to my family/friends who have been helping to spread the word. It has been quite an exciting day around here!

« Older posts Newer posts »

© 2026 For Everything There is a Season

Theme by Anders Noren — Up ↑