Wednesday, September 30, 2020

Eight Months

We are rapidly heading towards month eight of COVID in the United States. 

Month eight.

Who would have thought at this time last year that we would be here now, in this situation? People dying every day all over the country of a virus that the American government has politicized. Many high risk people unable to leave their homes, or can only leave for the most essential of tasks. People not being able to hug whomever they want. Business meetings taking place on something called Zoom. Doctor's appointments occurring online.

Weddings canceled
50th anniversary parties postponed
Birthdays where hopefully if someone plans it, people drive by your house and wave while honking their horns.
Families divided by thousands of miles because they don't want to get on an airplane. Or, they can't because they are high risk.
No concerts, fairs, or large gatherings.

I haven't even begun to scratch the surface.

Add in racial tensions like I have never experienced in my 49 years, natural disasters of every kind, and political tensions that make me believe America may not survive.

I could go on and on but the point is, life as we know it in this country is different in ways that I personally never imagined. I do wonder from time to time if that "normal" way of life will ever exist again. I don't think so.

In general, as Americans, we are broken.
So broken.

In the first few months of the pandemic, I was an absolute mess. I had just lost my dog less than six weeks prior to the start of the pandemic so I was home alone ALL DAY LONG. I couldn't leave my house, because of my high risk status. I was scared to death of catching COVID. I was obsessed with the news and any form of media because I always needed to know what might happen next. I couldn't get the follow-up medical appointments I needed until people figured out telemedicine. To this day, I still have a specialist I cannot get in to see. I typically see her every three months and I haven't seen her since last year.

As a person with a major chronic illness, I know a lot about feeling isolated and I have some excellent coping strategies, but adding COVID to the mix added a whole new complicated layer to living with my illness.

Frustration and anxiety gave way to anger. I was angry at just about everyone, especially when some places in my state started opening up. I was angry at people for not wearing masks, angry I couldn't go to church because of the policies in place that made it unsafe for me, mad at family members who were engaging in high risk activities because then I couldn't have contact with them. I was angry that my friend couldn't have a funeral for her mother who had recently passed. I was angry at the media, the government, and just about everyone else.

However, the thing I was the most angry about?
The way people were treating each other.

And unfortunately, that is still happening today, especially today. We just had a presidential debate last night and fifteen minutes on social media this morning, and I felt sick. Over the past seven months, I have been mortified with what I have seen and heard. Friendships and family relationships fractured...cussing coming from people whom I've never heard utter a cuss word their whole lives...the nastiness...the guilt placed on people based on how they are considering voting...the hatred.

Is this what we have been reduced to?

But, here's the thing. In the midst of my stress, anxiety, and anger over the past seven months, something happened.

Jesus happened.

I didn't suddenly "find Jesus" during COVID. 
I already had Him. 
And come to find out, He has always had me.
I had made that commitment the Summer of 2018.

However, the isolation and the questioning about what was happening in the world, and especially in our country, led me to find Him on a whole new level. Part of this was due to starting up a weekly in depth Zoom Bible study with two friends I met from my church. We did two Bible studies, both by a Bible teacher by the name of Jen Wilkin. One was on chapters 1-11 of Genesis and the one we are almost done with now is on the Book of Hebrews. 

Yes, Hebrews!

Doing such in depth (and hard!) studies with other Christians made Jesus more personal to me. Now that I finally understood it, I was moved by the Creation story in Genesis and in awe of the supremacy of Jesus that I found in Hebrews. I was spending more time in my study Bible, more time in prayer, and seeking Him out more. I was spending less time watching the news and less time on social media, although to be honest, that still needs some work! I subsequently found myself feeling less sorry for myself, less anxious, and my anger has dissipated.

It's very hard to feel sorry for yourself when Jesus suffered and died on the cross for me.

It's very hard to feel anxious all the time when you come to understand He is in control.

It's very hard to be angry all the time when you realize that He created every single person and loves them as much as he loves you.

Spending more time with Him these past seven months have made me more grateful...for who is in my life, for who is not in my life, and for what I have. It's heightened my appreciation for all of His wonder that I have discovered in the MANY walks I have taken this year...the birds, trees, colors, and animals.It has definitely made me more grateful for my family. You never realize how much you take people for granted until you are not allowed to hold them.

I don't know what the future is going to bring. I pray it brings change, a vaccine, a kinder America, and peace for the ones who are searching. But I do know that I'm grateful for a Savior who loves me unconditionally and will be with me every step of the way, no matter what the outcome is.

Thursday, August 20, 2020

New Medication Attempt


During my last rheumatology visit, telemedicine style of course, my doctor and I talked about what options are left for me in terms of treating Sjogren's. By the way, we officially call it Sjogren's now, and NOT Sjogren's Syndrome. I can get into that at another time.

I've been at this for twelve years now and have gone through a gamut of medication trials. The biggest issue is that there is no cure, or even a targeted treatment, for Sjogren's. Our rheumatologists do the best they can with medications used for multiple other autoimmune diseases, but we desperately need a treatment targeted for our disease. We, as patients, do the best we can with symptom management, diet, exercise, alternative medicine, and self care.

The whole medication treatment issue for Sjogren's is much too long to get into in this post, but let's just say, it's a crapshoot at best. For me personally, I take a medication called Plaquenil (also known as have all heard of that one!) and Evoxac. The Plaquenil is supposed to help my symptoms. I'm not sure how much it does, but I have tried weaning off it without much success and on top of that, it is supposed to help slow down disease progression and that is very important. Evoxac is a medication I take several times a day to stimulate saliva flow because Sjogren's attacks the saliva glands and there are numerous complications associated with that, most of which I have had at one time or another. I have lost a lot of function in my salivary glands.

Besides those two medications, I rely on prednisone, which is a steroid, when I absolutely have to. Long term prednisone is dangerous and since I require high doses of it, it's not a sustainable long-term solution. Typically, I go on a course of it one to three times a year. I did make it a year and a half without it once.

At my last visit, we decided that I should go on a round of prednisone. It was a little nerve wracking because of the COVID situation, but the numbers in my state were down and I felt like it was the best time to try and quiet things down, especially because my level of functioning had decreased significantly since Fall 2019 and we don't know what this Fall will bring in regards to COVID.

During my appointment, my rheumatologist also mentioned a medication called Sulfasalazine. It is classified as a DMARD (disease-modifying antirheumatic drug), which is also what Plaquenil is. However, it appears that they work on two different pathways and one article I stumbled upon mentioned that the two together could be more effective than either alone.

Part of the issues I have in managing my disease is that I cannot take any NSAIDs, including Motrin, Celebrex and others due to a history of gastritis (which can occur in Sjogren's patients), and stomach ulcers, which are a consequence of the NSAIDs. I do take a medication called Tramadol from time to time for my pain, but I have been asked by my gastrointestional (GI) team to not take these medications as they can cause some GI issues and worsen others.

The part that threw me off when my doctor mentioned this medication is that nobody had ever mentioned it to me before as a possible treatment. It is often used in patients with ulcerative colitis and rheumatoid arthritis. I distinctly remember administering it to my pediatric patients with ulcerative colitis when I worked at a children's hospital. Anyone who follows my blog, or knows me in real life, knows that I have a very extensive working knowledge of Sjogren's. I keep up-to-date on treatments, research, all of it. I will admit though that over the past year or two, I have been working hard at trying to shift my mental focus from thinking about Sjogren's all the time and have not kept up as much as I used to. However I thought I knew about all the medication possibilities. This goes to show you how important it is to be an informed patient.

From what my doctor said, it is not a medication that is often used for Sjogren's. Her main concern was that it has several potential GI side effects that are exactly the same symptoms I went through hell with for two years, and finally got under control at the end of last year.

I decided I would see how the prednisone course went and meanwhile, I talked to a few Sjogren's patients. Some of them had positive results with it, some have not, and many reported side effects. Sometimes the GI side effects are temporary and the risk can be lessened by starting the medication off slowly, meaning lower doses and at a lower frequency. Because it is a sulfa drug, there is also a risk on an allergic reaction, but I've taken enough sulfa drugs to not be very concerned about that.

I also decided to have a conversation with my GI team, whom I trust implicitly. They agreed with my rheumatologist about the potential GI issues, but compared to taking the NSAIDs, Celebrex, and Tramadol, they thought it was the best of all options to go with, if I could tolerate it. Of course, it's expected I will report anything unusual that may occur.

I did my online research and read about the side effects, the blood work that needs to be periodically drawn, and the fact that it can take two to three months to see any positive benefits. The decision was made to start it now, while I'm still doing well on the prednisone, to give the medication a head start to work.

I have to be honest, I was nervous about it. I think the main reason I was nervous about it is because of the possible GI side effects AND the fact that it has been FOUR years since I have tried a new autoimmune medication. Plus, I am very sensitive to medications, supplements, all of it. I prayed about the decision quite a bit and found peace in knowing that in my decision making process, I have kept doing the next right thing...the MD discussions, the research, and talking to patients. Now, it's all up to God and paying attention to my body.

I believe strongly that at this point in my journey, I have too much to lose to NOT try it. I have the bottle here at home with me now. It has to be taken with food, which is going to be a huge challenge since I do intermittent fasting, but for now, it's only once a day, and that I can manage. I was going to start it today but then realized that I have to go to an appointment this afternoon and I don't want to introduce a new medication into my system without being at home. So, tomorrow it is.

I do hope the medication helps and that I tolerate it. I have some hope, but I'm also very realistic. And if it doesn't work, or if I have to stop it because of side effects, I'll just keep trying to move forward.

Sunday, August 16, 2020

Returning To My Gift

It has been almost two and a half years since I've written in this blog. It has been the same amount of time since I've really written anything, except for Facebook posts and greeting cards. These facts do make me sad.

For those of you who know me, and to inform those of you who don't, writing had long been my passion. I started writing this blog regularly after becoming ill, losing my job, and going on disability. I had always enjoyed writing, but once I had hours upon hours of free time to fill up, I realized that writing was not only an outlet for me, but a way that I could help others through what I was experiencing and learning in my chronic illness journey.

This blog mostly started off because of my health journey but it became so much more than that, hence why I titled it Thoughts and Ramblings on Life, Love, and Health...a title that I am actually considering changing, but that would make complications for me since the blog title is on my book. The jury is still out on that!

I started this blog in 2010 and was very dedicated to it.The more I wrote about chronic illness and autoimmune disorders, mostly Sjogren's, the more I heard from other patients about their experiences. It was at that time that I felt moved to get word out into the world about how much Sjogren's was misunderstood and misdiagnosed. So I spoke with many of the patients I had come to know and their stories gave birth to my first and only book, Tales from the Dry Side: the Personal Stories Behind the Autoimmune Illness Sjogren's Syndrome.

Several years after the book was published, I stopped writing, completely. People asked me why I wasn't blogging anymore and I kept telling them I had lost interest. And when I told people this, I meant it. I had absolutely no desire to write or put my thoughts and feelings out into the world anymore.

Deep down, I knew there was more to it than that. For example, my last blog entry before today was a story about my dog, Molly, who was like a child to me and died at the age of 15 years old. Her death, and my post about her death, absolutely wrecked me. 

After her death, I had several painful surgeries, followed by long recoveries and we almost lost one of my stepchildren. Shortly after Molly died, we were in a position where we needed to take in another dog, who was not living in good circumstances, and desperately needed a home. That dog, Foxy, subsequently suffered many serious health issues during a majority of her time with us and ultimately died a short two and a half years after we took her in. 

A relative passed away, my health deteriorated, and I made a major decision to leave a church I had been a longstanding member of and I not only changed churches, but went to another church home that was in most ways, the opposite of where I came from. And, I did this alone, meaning without my husband. I guess in many ways, I felt the need to turn inward, to self protect, and to be in survival mode.

However, not too long ago, there was a week where on three separate occasions, the topic of finding and recognizing my spiritual gifts came up. I think the first time might have been during a sermon at church. We're in a pandemic. I lose track of a lot of things! The second time was definitely during a church related class that focused on finding and using your spiritual gifts. That grabbed my attention like a lightning bolt. The pastor was talking about worksheets we were given that would help us find our spiritual gifts. Immediately, writing came into my head. While I do believe I have other spiritual gifts given to me by God, that was the one that overtook my brain. and it was in that moment that I realized how much I missed writing and how much I was wasting this God given talent...not because I'm some amazing talented writer who has perfect grammar and what have you, but because I write in a way that makes people think and more importantly, helps people.

The third thing that happened in that span of time was that my therapist asked me during a session why I don't write anymore. I explained to her about not having the desire to write, etc. But then something in me stirred and I knew I should share with her how I had been feeling about the writing issue. So, I finally did.

Because let's be honest, it wasn't about not having the desire to write. My therapist and I had some good conversation about this and all the underlying junk that went with it, a lot of which I mentioned above. She encouraged me to not worry about blogging and just write for myself and eventually I did, in a journal. I found this process helpful in identifying much of what was holding me back: thinking I wasn't a good enough writer, feeling "less than" compared to other writers, being sick of hearing about, and writing about, Sjogren's, for so long feeling too vulnerable to put myself out there, and the fact that the person (and hence, writer) that I am now looks quite different compared to the writer I was over two years ago, especially from a spiritual perspective. I was afraid of judgment. There's this big part of me that wants to write about my faith and Jesus, but I'm so afraid of getting it wrong.

So I spent a lot of time in prayer about all this and I did more journaling...just for myself. I had never written for myself; it was always for other people. What I came to realize is that the gift of writing that I have been given is not for me to ignore or take lightly. It is a gift to be used and shared. I don't need to beat myself up over the time I didn't use this gift; it was a season. But now, it's time to move on to a new season and I hope you will come with me through it.

If you are a reader of my blog, thank you for being here. I do ask for your patience as I found out when I logged in to write this post, that my blogging platform (eBlogger) had completely changed almost everything about the platform. I cannot even find spell check right now. And, when they made the changes, all the formatting got messed up. I guess that means I'm just going to have to work a little harder at it.

Also, thank you to the people who gently kept encouraging me to come back, most especially, my very supportive mother and my ever patient husband. I love you both.