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Category: autoimmune disease (Page 1 of 19)

The Road to COVID-19 Vaccination: Dose One

February 21, 2021 / / 0 Comments

What a year it has been.

As my pastor mentioned today in his sermon, when everything (including my church) closed down last March, we never thought we’d still be in the midst of this pandemic a year later. Heck, we were thinking we’d be back in church for Easter services. Little did we know…

In Massachusetts, like many other states, the vaccination process is slow going. As many of you probably already know, the guidelines for when certain groups of people get the vaccine is determined individually by each state. What this means is that someone who is a teacher or a restaurant worker, for example, may get their vaccine earlier, or later, in one state as compared to where I live in Massachusetts.

Because of differences in how each state prioritizes their groups and also differences in how quickly a state moves through the phases, I had been watching many of my friends, who have Sjogren’s and other related medical conditions, getting their first, and even second, vaccine doses. So, I was patiently waiting for Massachusetts to get to my phase while I was eagerly keeping track of governor updates because based on what I had seen occuring with the previous groups, I knew it would be a challenging process.

Due to my medical conditions, I am considered high risk for COVID-19. I also fall into the vaccination group of high risk people with two medical conditions as defined by the state and the CDC. I actually have three of the conditions, so there is absolutely no question of what group I fall into. This puts me in the Phase 2B group in Massachusetts, along with the 65+ folks.

It’s hard to wait in anticipation of something that will eventually change so many facets of your life. With some rare exceptions, I have been on lockdown since the first weekend of March 2020. I remember the weekend vividly because it was the last time I had been in a restaurant. My husband and I had gone to one of our favorite local establishments to have lunch with my stepson and his girlfriend. Then, everything got shut down.

Since I have several conditions that make me high risk for either getting COVID-19, or getting sicker than the average person if I do get it, my husband and I have taken the precautions seriously and our entire lives have changed because of it. And the closer I got to the possibility of starting the vaccine process, the harder it got to wait.

I am on disability because of my health, but I do still have a valid nursing license that I keep up-to-date. That license would be all that I would need to get vaccinated in our state’s first phase, which was for medical personnel. Many people encouraged me to do so. If I am being completely transparent, I briefly considered it. I had been isolated for ten months at that point, I was struggling with depression at times, and I was starting to be get more concerned about my mental health than my physical health. I did a lot of praying about it and when I thought about it and listened to what God was saying, it just didn’t feel right. If I was working as a nurse, of course I would have signed up for my vaccine. But, I wasn’t. I could (mostly) stay safely in my house and by doing so, not take a vaccine away from a healthcare worker or person over age 75.

About two days after I made that decision to wait, a friend of mine, who knows my situation, contacted me to tell me that one of the mass vaccination sites in Massachusetts (coincidentally, the one closest to me) was opening up appointments for those with two or more high risk health conditions and 65+. I didn’t understand why since I hadn’t heard anything on the news about it, especially since it was a holiday.

I went to the facility’s direct link my friend gave me and sure enough, you could register for an appointment if you have two or more high risk conditions and there were plenty of appointments to choose from, so I secured an appointment for a Friday afternoon, which is when I wanted to go in case I had a reaction or side effects over the weekend. That was only four days away. However, when I shared the registration link with two people in similar situations, the 65+/high risk option would disappear, reappear, disappear again and they couldn’t register. I started to wonder if it was a mistake or a computer glitch.

A little over 36 hours later, our governor advanced the schedule for the 65+ and high risk groups to be vaccinated, but appointments at the facility I signed up for disappeared almost instantly because so many people were making their appointments directly through the facility’s site. I do know a few people close to me who were able to get appointments at other sites, but the state registration system initially failed and when it finally did go back up, appointments were taken up very quickly.

This would probably be the time to mention that I did not come to this decision to get the vaccine lightly. Like everyone else, I had known about the vaccine for a while and I really struggled in coming to terms with getting it. I am not anti-vaccination by any means. But, I also know enough about science and medicine to know that there was a potential for complications, especially in regards to the autoimmune illnesses I have. What if the vaccine caused more autoimmune issues? Would there be any long-term consequences to getting the vaccine? How long would it work for?

Some of you know that back in 2012, I was stricken with some scary symptoms that doctors could not figure out right away and I ended up being diagnosed with a mild form of Guillain-Barre, a neurological autoimmune disorder which back then, was loosely associated with the flu vaccine. We do not know if that was the cause in my case, but I could have died. And, I was told not to get a flu shot ever again. However in recent years, new research came out that showed the chances of getting Guillain-Barre from a flu shot was LESS than if you got the flu because the flu itself can lead to Guillain-Barre. This was the first season in 10 years I got a flu shot.

These were the kinds of things that concerned me though about the COVID-19 vaccine. That being said, I did a lot of my own research and had conversations with my medical providers, who, despite knowing there have been no trials of the COVID-19 vaccine in autoimmune patients, overwhelmingly suggested I get the vaccine. I also received some valuable information from a person I know very well who has a connection with someone who worked on the Pfizer vaccine and after talking to him and learning more about the technology in developing the vaccine and how long mRNA has been around, I felt more confident that it was the best course of action for me.

Lastly, I thought about the philosophy I have incorporated into my life since my Sjogren’s journey started and that is: don’t let fear of the unknown future prevent you from living today. While I have learned some valuable lessons during this pandemic, I am not safe in this world from COVID-19 without a vaccine.I strongly feel that God wants me back in society as much as my health will allow me to be and he has left this opportunity at my door to do so.

Two days ago, I went and received my first dose of the Pfizer vaccine at a mass vaccination site. I was hoping to get the Pfizer vaccine, but would have taken Moderna as well. My husband drove me for two reasons…because I do have an allergy to CT scan contrast and because we were going during what was supposed to be a winter storm (it fizzled) and if there were going to be wasted doses due to people not showing up, I was hoping he could get vaccinated, which ended up not happening.

The process went much smoother than I anticipated although I have to admit, I was scared. The site wasn’t overcrowded like I thought it would be, there was no wait, and the whole process seemed to be flowing well. I was told that I would have to stay twice as long for observation because of my allergy history, but that actually reassured me that the people doing the vaccinations were on the ball. The injection itself was painless, which was surprising. My blood draws are more painful than the COVID injection. I got a vaccination card, a second appointment for three weeks, and told what to do in the observation area. Hopefully, there will be enough vaccine for my second dose.

Once I sat in the observation area, I almost immediately got a bad headache, which left me pretty quickly, maybe 5-10 minutes later. We picked up some dinner and all was going well until about two-three hours later when my arm started to hurt, a lot. I’ve had a lot of experience with this because as an adult, I’ve had several pneumonia vaccines, tetanus, pertussis, etc., but this was certainly the most pain I’ve ever had from a vaccine. I took some Tylenol and put an ice pack on it, which did help some.

I’m now approaching 48 hours post-vaccination and I have felt worse this weekend than I thought I would, especially since I heard that it’s the second dose that gives you the worst side effects. I’ve experienced what feels like mild cold symptoms, headaches off and on, nausea, one episode of dry heaving yesterday morning, some dizziness, and severe fatigue. Except for the fatigue, none of this has been dramatic and overall has been quite manageable with rest and fluids. Also, you must keep in mind that since I have autoimmune diseases, my body makes a life mission out of attacking my healthy cells on a daily basis, so introducing something like the COVID vaccine is a lot for my body to handle.

So, I wait. I am not considered fully vaccinated until two weeks after my second dose, which like I mentioned, is in three weeks. However even then, I will not be going back to a life of freedom because even if you are fully vaccinated, you can still spread the illness to others and I will not take that chance with my husband, who will be waiting a while to be vaccinated if Massachusetts doesn’t improve the vaccination process. We have had conversations about this and have decided that until he is vaccinated, I will only be adding going to stores (which he has been doing) and seeing my parents (who have been cautious) to my list of limited activities. Church, social gatherings, eating out, events, and other things will have to wait.

I’m more than O.K. with this plan. First, and most importantly, my husband has carried the burden of being married to a high risk person during a pandemic for almost a year now, he has sacrificed a lot, and never once, has he complained about it. Now it is my job to do the same for him.

Second, in addition to Jesus, I’m hanging on to something more valuable than all those other things I listed…

I have hope.

From the moment I clicked that button to complete my vaccination registration to the moment I got that shot, to the moment, I felt my first side effect and thought, “that’s my body building up immunity”, I have felt hope…not for a life that looks like the one I had pre-pandemic, but rather, a life that will be more appreciated and more intentional. A life that will hopefully be more safe.

My prayer is the same for you.

(As an aside, I am off social media for Lent, but my blog posts will be posted. If there is some way I can help you with vaccine appointment registration or navigating the system in Massachusetts, please contact me at cmolloy435@charter.net).

A Year Journey With Intermittent Fasting

February 16, 2021 / / 0 Comments

Disclaimer: This post is about my own experience only and information I have learned. intermittent fasting may not be safe or suitable for you, especially if you have any medical conditions. Please consult with your doctor.

Photo credit: Caroline Attwood via Unsplash

My intermittent fasting journey began one year ago today.

I knew nothing about intermittent fasting (also referred to as IF) until a friend of mine, who also has Sjogren’s (an autoimmune disease), posted about it on Facebook. Since starting IF, she had seen changes to her body and improvement in some of her Sjogren’s symptoms. I messaged her and she pointed me in the right direction to get started.

My friend told me about a book, and a corresponding Facebook group, that she found very helpful in learning about IF. That book is Delay, Don’t Deny: Living An Intermittent Fasting Lifestyle by Gin Stephens and it has honestly been one of the most life-changing books I have ever read.

I started doing some research and to be honest, I was skeptical about this whole fasting thing and the claims that were being made about what it could do for your body. Coincidentally, at the same time, I found out about a one hour seminar about IF that was taking place at Massachusetts General Hospital, which is where several of my specialists are and the seminar happened to be right after an appointment I had that day.

I made a point of reading as much of Delay, Don’t Deny as I could before the seminar so I could better understand the mechanisms of how this eating plan worked. Sure enough, the seminar, which was being put on by the weight management department at Mass General, told me a lot of the same information as the book did. There had to be something to this. An important point I would like to make here is that I did discuss IF with two different specialists, who have known me for a while, and they were both on board with it.

I joined the Facebook group that my friend recommended and I was shocked at some of the results I was seeing online; not just weight loss results, but health benefits as well. At this point, my weight was the highest it had been since I met my husband 9 years prior and I was struggling not only with the joint and muscle pain that comes with Sjogren’s, but the associated complications such as irritable bowel syndrome, reflux, and the overall general inflammation that comes with an autoimmune illness. In addition, I have a history of struggling with sugar addiction and polycystic ovarian syndrome.

So what is intermittent fasting?

Many people have the misconception that it is starving yourself or that if you fast, it must only be for religious reasons or because you have an eating disorder. But, intermittent fasting is just that, intermittent. It is a way of eating that is targeted towards changing your metabolism so that you lose fat, retain muscle, and stop damaging your metabolic system with yo-yo dieting.

When we are constantly eating meals and snacks throughout the day, our metabolism is constantly on the go. This food intake also includes all substances we put in our body meaning that it is not just food; it is also all those drinks and mocha latte whatever they are called coffees we drive through to pick up on our way to work or school.

What does this do to the body? It causes our body to constantly produce insulin, often much more than we need. These high insulin levels then result in preventing our bodies from burning our fat stores and continue to keep adding to those fat stores. More insulin production=more fat.

When we fast for a certain period of time (the time depends on many factors), our body does not produce those large amounts of insulin, the glycogen (which is stored glucose) in our liver starts getting used up for fuel and after a period of time, once it is depleted, our body starts using the stored fat for energy instead. Using that stored fat can lead to weight loss and improvement in health for some people.

My explanation here of how IF works is very simplistic. While I understand a lot more of the science behind IF, there are a TON of resources online and in bookstores that provide a better explanation than I can. I highly encourage you to do your own research and talk to your doctor. I found the book I previously mentioned, Delay, Don’t Deny and Gin Stephens’s second book, Fast. Feast. Repeat very helpful, especially since the second book dives more into the science of IF.

Some of the possible benefits of IF are:

  1. Decreased inflammation
  2. Weight loss
  3. Cardiovascular benefits
  4. Straightens out hunger hormones
  5. Helps with metabolic syndrome/PCOS
  6. Improves brain health

And, the list goes on and on. These are not just random benefits that somebody came up with. There is actual scientific research on the positive effects of IF on the body and I encourage you to check out some of the studies done on the benefit of IF on autoimmunity, as well as other medical disorders.

So the big question I get a lot about IF is:

How do you do IF? That is a very loaded question because there is no one way to do IF. There are multiple ways to follow an IF program. I would say the only exception to that statement is that you must do it CLEAN! Fasting clean means that when you are in your fasting stage, you should only take in the following things: medications, black coffee, plain tea (plain means no flavoring at all), and water. That’s it. Anything else can release the production of insulin during your fast and you don’t want that! 

Like I mentioned, IF can be done a variety of ways, all of which are explained in the two books I mentioned and on various online resources. Some people fast every single day for various periods of time, some fast every other day, and others only fast for a certain number of days per week. The goal is to find what works best for your body and that does take some trial and error.

When I initially started IF, I only fasted 12 hours a day for the first few days and gradually increased my time. I did get headaches and hunger pains in the beginning. I would say that the first two weeks were the hardest. It took me about two months to sit back and say that this was right for me and that I could (and wanted to) do it for the long haul.

I fast every single day, typically for a minimum of 16 hours, but I average anywhere between 16-22 hours a day. My average is 18 hours a day. I never aim for over 20 hours, but since I have been doing this for a while now, sometimes I’m not hungry and when I check my app, I realize it has been 21 or 22 hours since I’ve eaten. That is a rare occurrence though.

I have done this for a straight year, even on holidays. I choose to fast every day because I have multiple medical issues and I am on a list of medications, some of which can damage my stomach, so I have to eat every day and make sure my doctors remember that I am doing IF. One exception to my 16-22 hours is when I am on antibiotics, steroids, or temporarily have to take a medication that must be taken with food; then I drop my fasts to 12-14 hours a day.

With IF, you can also choose when you eat, which is especially helpful for shift workers. My IF schedule is rarely exactly the same. That being said, I do tend to start fasting around 4-6pm on weekdays and then don’t have anything, except water or green tea, until around 11-12 the following day. This schedule makes me feel my best. Often it means that during the week, I cook dinner, eat early and then sit with my husband while he eats after work. Other times we eat together. I have that flexibility because it’s just the two of us. 

On weekends, fasts are typically shorter and/or they start earlier/end later as my husband is home and we’re usually together. That’s the beauty of it though…IF can be altered to fit your lifestyle.

In the year that I have been doing IF, despite a pandemic, some rounds of steroids, a family crisis and many other stressors, I have managed to lose 30 lbs. I think that while most of my fasts were clean, meaning I didn’t take anything in during fasting times, my diet has not been as clean as I would like it to have been in regards to what type of foods I have eaten. But, I’m doing the best I can right now and I am working on improving that area of my life.

I also started taking measurements last February because I know the scale doesn’t always tell the whole story and that can be especially true for people who do intermittent fasting. I took measurements of my hips, waist, bust, and underbust. I didn’t bother with my legs and arms because they don’t hold most of my fat. In total, I lost 14 inches this past year and I can tell the difference by how my clothes fit.

Most importantly, I have several symptoms that I feel IF has improved including reflux, irritable bowel syndrome, and migraines. When I am fasting consistently for 18-19 hours a day, I have ZERO food cravings, and that includes sugar. I have had these cravings for as long as I can remember and there is such a freedom in not having them anymore. When I was doing 12 hour fasts because of a 2 week course of a potent antibiotic, the cravings came back and as soon as I had a few weeks under my belt of the longer fasts, ther cravings went away. I have also experienced that it is easier for me to exercise when I am around the 15-16 hour mark of my daily fast. 

I have tried every possible eating plan to not only lose weight, but more importantly, to improve my health and I strongly believe that intermittent fasting is one of the most important tools in achieving my goals. Like I mentioned at the beginning of this article, it may not be suitable for everyone and I don’t believe it is a cure all for autoimmune diseases. I don’t believe anything is. However, it is a very powerful tool on the path to wellness. If you have any questions about IF, please feel free to ask them in the comment section below.

Be well.

Chronic Illness and Fear

February 11, 2017 / / 6 Comments

Photo Courtesy of Myers Creative Photography

I had this huge revelation the other day and I am sharing it with you because I would bet money that some of you have experienced very similar feelings.

The back story is as follows:

For about a month, I haven’t been feeling right and in a way that feels different than “just Sjögren’s.” As I blogged about earlier this week, my main debilitating symptom has been fatigue. Now fatigue has been a Sjögren’s symptom for me since day one, but this has been even more over the top than usual.

I recently increased one of my thyroid medications (I have hypothyroidism from radiation treatments I received for cancer in 1996.) and was wondering if my levels were totally out of whack. I had them tested earlier this week but I have not received the results because this is the one specialist I have left that just cannot get their act together enough to get me results in a prompt manner; last time it took almost four week…ridiculous!

In addition to the fatigue and thyroid checking, I was working a little more than usual and I work in a school. Every single germ known to mankind was circulating through each of the three schools I work in and next thing I know, I was down for the count about two weeks ago and instead of getting better, I got much worse with a respiratory infection, fever, the list goes on and on. And I just couldn’t bounce back. I finished a round of antibiotics and now am on day four of a higher dose of prednisone for my lungs (I have autoimmune related respiratory issues). Yesterday was the first day I was able to leave the house on my own and actually participate in the world.

For a few years now I have been seeing a therapist to help me deal with having a severe chronic illness. My main reason for starting to see her was to help me find more balance between my illness life and the rest of my life, especially in my relationships. She has done that and so much more. However I had not seen her for about a month and I finally got back in to see her a few days ago. I was a bit of a mess. I was totally overwhelmed with not only my Sjögren’s symptoms and issues, but the current respiratory/flu/cold junk I had as well. I was especially worried about the fact that I could barely move my body from the bed to the bathroom. It took me hours that day just to drag myself to the car to get to her office.

I was freaking out about how sick I was, more so than I thought was appropriate at the time. I mean seriously, EVERYBODY in all of western Massachusetts has been sick, I was no exception. Granted yes, I have underlying issues that can make things like a cold or flu much worse for me, but still. I was getting really nervous that I couldn’t just bounce back.

So my very rational therapist pointed out to me that yes, there’s a lot of illness going around but also that it takes time to recover from these colds, flus, respiratory infections, etc. And that maybe, I have been feeling so poorly over the past month because like everyone else, I have been hit hard and need whatever time it takes to heal and recover.

Now this seems like common sense and it is,and that is when I had my revelation.

I was scared.

Because I was sick for a more prolonged period of time than usual, I was scared that it wasn’t just a typical “you will get over it” type of winter illness.

No, I was afraid that THIS would be my new normal.

Why would I be so panicked about such a seemingly irrational thought? Tons of people get sick in the winter.

Because in 2008, this IS what happened to me.

In 2008, I went from a fully functioning 30-something to a disabled, out-of-work 30-something in about a month. Because nobody knew what was wrong with me at the time, I truly thought I was dying. Life as I knew it completely changed in every single aspect: my job, my home, my finances, my marriage, my sense of identity, and especially how I perceived myself. I went from working as a full-time nurse to working as a full-time patient. Almost everything was taken away from me.

I realized that all this current business was all about FEAR.

I was basing my current thoughts about how I physically felt on my previous experiences, rather than on the reality of the current situation.

I don’t know about the rest of you, but fear has been a common theme interwoven with having a chronic illness like Sjögren’s, and the numerous other health issues that plague me as well. And I have to tell you, fear is a bitch. I have been working hard to get through those fears over the past year or two: fear of getting sicker, fear of losing my disability or health insurance, fear of becoming totally incapacitated, fear of traveling…what if something happens while we are away?? Fear of losing more friends…fear of never being able to support myself again…I could go on and on. But this realization that I was now afraid of a typical winter respiratory illness and the symptoms associated with it being my “new normal” threw me off a bit because until that moment in the therapist’s office, it never dawned on me that was why I was so upset.

Here’s the thing though and I wholeheartedly believe this. Once you realize your fears AND acknowledge them, you are halfway to defeating them. By recognizing them and facing them head on, we can slowly begin to master them. For me, in addition to therapy, meditation and yoga has been helpful. Meditation because it allows me to clear my head, as much as possible, of the constant stream of racing thoughts and worries I often have. Yoga because it helps me gain some control of my body, breathing, and thoughts. Yoga, shows me what my body is capable of and therefore lessens the fear of my own body.

I would be interested in hearing about what fears you may have associated with living with a chronic illness and how you deal with them, if at all.

 Feel free to comment below…

How Sjögren’s Has Affected Me

April 1, 2016 / / 5 Comments
Photo courtesy of the Sjögren’s Syndrome Foundation

Today is April 1st, the first day of Sjögren’s Syndrome Awareness Month. Despite the fact that Sjögren’s is one of the most common autoimmune disorders out there, most people have not heard of it and many doctors do not know how to appropriately treat the illness or its complications.

The Sjögren’s Syndrome Foundation put out a blog post today which included an updated human diagram of the different systems that Sjögren’s affects. Oftentimes, Sjögren’s is looked at as solely an illness that causes dry mouth and dry eyes. To start with, the dryness that accompanies Sjögren’s is no small matter. Dry eyes can cause serious ocular complications, including vision loss and dry mouth can cause difficulties with swallowing and rampant tooth decay. In addition to dry eyes and dry mouth, Sjögren’s can adversely affect just about every system in the body, as illustrated in the SSF’s diagram above.

I have been doing this blog for a while now, so I don’t remember if I posted about my specific Sjögren’s symptoms, but I seem to think that I never have done so. This blog entry is going to be about that…the Sjögren’s related symptoms that I have had to deal with since my journey with this illness began. Please don’t panic! It does not mean you will have the same symptoms or even have it as severely as I do. But, it is important to be as informed as possible. Only YOU  are going to be the person driving the bus towards wellness.

* Dry eyes: An eye doctor picked up on this well before I even noticed my eyes were dry. I believe it was probably my very first symptom and it occurred well before the disabling symptoms occurred in 2008. The first eye doctor I had picked up on the dryness during a routine eye exam and I completely blew off his suggestion to start using eye drops regularly. That was, until the dryness became uncomfortable and once that happened, there was no going back. I have experienced mild corneal abrasions from the dryness. The abrasions have not been a problem since I started working with my new eye doctor. He diagnosed me with Meibomian Gland Dysfunction which subsequently changed the treatment I was doing. The dry eyes are still a daily issue for me, but the severity has lessened some.

* Joint and muscle pain: If you’ve read my story in my book Tales From the Dry Side, you will know that joint pain was the first major symptoms I had that became disabling. Muscle pain followed a few years later. My joint pain often occurs in my finger and toe joints, wrists, elbows, shoulders, ankles, and knees. The muscle pain is widespread The intensity varies dramatically and is oftentimes activity dependent. I have also noticed a trend in stress and diet exacerbating my pain levels. The treatments I have tried are numerous and if you want details, please feel free to e-mail me.

* Respiratory difficulties: This is a tough one for me to describe. It was the second debilitating symptom I had which started in 2008. I call it asthma just for simplicity, but it is not asthma in the traditional sense. My pulmonologist has also called it reactive airway disease. I have had abnormal pulmonary function tests and at times have required inhalers that are typically used for COPD. This particular issues has improved dramatically for me in the past few years, since I started getting allergy shots actually.

* Reflux and esophageal motility disorder: I have had some serious bouts of reflux since getting sick. At one point, in 2012, I was vomiting all of my food and ended up hospitalized. After more tests than I care to recount, I was told that I have an esophageal motility disorder called nutcracker esophagus which means the muscles in my esophagus don’t contract and relax the way they should. Medication helped tremendously for a while and I was able to wean off of it. Once in a while, it acts up on a much smaller scale. The reflux is being controlled with alternative medicine supplements.

* Interstitial cystitis (IC): I get angry about this one. I suffered with what felt like UTI pain and symptoms on and off for almost a year before somebody recognized I had IC. I kept getting tested for a UTI and then was told the symptoms were in my head. It took a third doctor (a urology specialist) to diagnose me correctly. I had a procedure done and changed my diet and I have been stable for several years now.

* Fatigue: If I could get rid of one symptom for the rest of my life, this is it; even more so than the pain issues. Because no matter how much rest I get, if I am not on steroids, I am chronically exhausted. I do have a little control over the fatigue in terms of getting a lot of rest and/or watching my stress, but it never really goes away. There are just varying degrees of it. And, it really affects my day-to-day life, my ability to work, and my relationships.

* Dry mouth: I didn’t develop this symptoms until I had been sick for a few years. Once I did, my mouth went haywire. The biggest difference in the severity of my dry mouth has been seeing an oral medicine doctor.

* Salivary stones/blockage/infection: Due to the lack of salivary flow and changes in the consistency of my saliva, due to Sjögren’s, I have developed salivary stones. I also get swelling. On one occasion, I got a major blockage and infection on one side that required steroids and antibiotics to clear. The oral medicine doctors suctions out the stones every few months, which has helped me significantly.

* Neuropathy: This is something I am currently in the process of being tested for. I would say for me, it is the second worse symptom, after fatigue. Peripheral neuropathy causes nerve pain and itching in my legs and feet, sometimes making walking a huge challenge. I have also been experiencing dizziness from changing positions and from standing more than a few minutes. I have come very close to passing out more times than I can count. I’m also experiencing dramatic temperature swings. This may all be related to something called autonomic neuropathy. The jury is still out on that. But all the evidence is pointing that way.

* Dry nose: This has resulted in painful sores and staph infections in my nose.

* Dry skin: Probably the lest dramatic of my symptoms, but annoying enough to merit a mention!

* Raynauds: This is a lovely disorder that occurs when your hands and/or feet experience severe cold intolerance and this impacts your circulation. The hands/feet undergo color changes and the process can be quite painful.

* Sinus inflammation/infections

* Brain fog/memory loss: I had testing done several years ago that showed I had memory loss. Since then, I have been working hard on my memory issues, but that, as well as the brain fog, is still very much an issue at times.

* Rashes/photosensitivity: The frequent rashes have diminished over the years, but I still have a really bad time in the sun. When my husband and I were in Florida a few years ago, despite using SPF 50 liberally, I got a horrible sun-related rash that took days to get under control.

The above list included the symptoms that are related to Sjögren’s. There have also been a few other issues that MAY have been related to Sjögren’s, but no definitive relationship can be proven:

* Gallbladder disease: Obviously, many people without Sjögren’s have gallbladder disease and I had several risk factors associated with it. However my observation and research has shown me that gallbladder issues are very common in people with Sjögren’s.

In addition to that, I have been experiencing a lot of stomach upset and diarrhea over the last few months. I had my gallbladder out in November of last year. I did recover but I don’t know if these GI issues are related to the gallbladder surgery or if they are autoimmune related. I will be honest, I have so much going on right now medically, it’s on the back burner.

* Guillain-Barre syndrome (GB): This happened to me in 2012 and it was seriously one of the scariest things in the world to go through. I was fortunate enough to have a mild case. There is no correlation between Sjögren’s and Guillain-Barre, but GB is also an autoimmune disease.

* Hypothyroidism: My doctor cannot determine if my hypothyroidism is related to radiation treatments I had years and years ago, or if it is autoimmune in nature.

* Vocal Cord Dysfunction: I don’t know of a correlation between this and Sjögren’s, but I do know many Sjögren’s patients who have experienced vocal cord dysfunction.

* Migraines: I never had migraines until I had other Sjögren’s symptoms, so why knows!

I would be interested in hearing about what Sjögren’s symptoms you or your loved one have experienced. Please feel free to comment below….

Where Is God In All Of This?

March 31, 2016 / / 3 Comments

It’s the end of March and here in New England, the temperature is supposed to be in the 60’s. The sun is already shining brightly and I can feel the gentle breeze coming through my already opened windows.

I woke up sick for my second straight day with a cold; definitely not the worst I have ever had, but the exhaustion is unbelievable. I’m not even sure if the exhaustion is from the cold, the Sjögren’s, or both. I just know that between this cold, an exacerbation in my autoimmune symptoms, and a stomach virus a few weeks ago, I am done.

So done.

I’ve had a lot going on in regards to my health lately, specifically more joint/muscle pain, terrible pain (?nerve related) and itching in my feet and legs at night, dizziness when I stand too long or change positions, nausea, chills, you name it. I could go on and on because honestly, there’s not too much NOT acting up in my body right now, but that gets old after a while.  It feels like my entire body is pissed off and launching its own rebellion.

Partly because of all this, I have been doing a lot of thinking about God lately. And church. And faith. I will be honest, I’m kind of ticked off at God lately. And curious. Curious about the eternal question: why bad things happen to good people. More specifically, why these terrible illnesses happen to the best people.

If I sit back and think of all the people I know with autoimmune illnesses, cancer, and other life altering diseases, I would say that 95% of them are the most kind hearted, giving people you will ever meet in your life. These are the people who do volunteer work and constantly want to give of themselves to others. But here is the problem: these people, including myself, cannot do all the good they want to do in this world because they have had so many of their physical abilities taken away. As of late, my volunteer work has come to a halt and I have had to refuse just as many shifts at work as I’ve accepted; a job which calls me to be of service to others.

So what does God have to do with this?

Well, a lot.

I was told recently, and it certainly wasn’t the first time, that I just need to have more faith. God has a purpose for my pain and suffering. God will heal me. Have more faith. Pray more. Do more for others. God will answer your prayers.

I’m calling bullshit.
At least for today.

I know all the devout Christians in the room are probably freaking out right now reading this. And, I do consider myself a Christian, and a pretty strong one at that. But, I no longer believe that God is making me suffer in order to make me into a better person. I’m not even sure God is really responsible for my pain and suffering. Because surely if he was, he would have brought some healing my way by now, no? The response I have gotten to that statement in the past is that everything is on God’s time, not mine. I get that. I am not in control and honestly, that’s quite a relief. But that doesn’t answer the question of: where is God in all of this?

So then I ask God, when is enough, enough? I spent the first six or seven years of my illness thinking that God was using my illness to help others and to make me a better, stronger person. Have those things happened? Definitely. Would they have happened if I didn’t struggle so much with my health?

Maybe.
Maybe not.

Maybe I just needed to tell myself that in order to keep pressing forward; in order to not just totally give up on this life of mine that for twenty years, has been riddled with so much sickness, pain, and struggle. I have a lot of respect for those Christians who have complete and total blind faith in God and in what his purpose is for each of us. I think I may even envy those people at times. They are able to not question God or his motives. They completely trust in him to take care of them, no matter what. I have had periods of time like that, but more often than not lately, I doubt all of it.

And you know what? I think that is OK. For me, a faith based on doubt, as well as belief, is a faith of my true self. The questions I ask and the doubts that I have are because I seek answers, rather than blindly ascribing to beliefs that others want me to believe. Because at the end of the day, it’s not between me and other people. It’s not between me and my church. It’s between me and God. For me, sometimes it just comes down to the basics…

Do I believe in God? Yes
Do I believe Jesus died for our sins and rose from the dead? Yes
Do I believe in a loving and non-bigoted God? Absolutely

What I also do know is that I have more questions than answers right now and the heaviness of all that this morning was tremendous. And I was upset. So I decided to go beauty hunting, a concept that was introduced to me by Jennifer Pastiloff, an amazing yoga teacher, writer, and human being. To me, beauty hunting is the same as looking for God because in essence, God is the creator of, and is a part of, all that is beautiful in this world.

I thought that beauty hunting would be a challenge since getting out of bed is a challenge in itself this week. But once I opened my mind up to the process, it just sort of happened. I started by going to the fish tank because my husband told me, when he left for work this morning, that our new starfish was making an appearance in the front of the tank. This is a BIG deal because first off, I am obsessed with starfish and secondly, we just got him. He spends a lot of time hiding in the back of the tank or in between all the rocks. But today, he was out and about for me to enjoy.

While I was at the tank, our little clown fish, Nemo, also came to the glass to look at me. The bonus though was that our Watchman Goby fish came out of HIS hiding spot, which is not only a rare occurrence, but it was the longest I’ve seen him out and about since we got him a few weeks ago.

Part of the reason I woke up so annoyed was because it is so beautiful out today and I am stuck at home. So, I took my 14 1/2 year old dog, Molly, out in the backyard so she could get some fresh air. Apparently, I needed the fresh air just as much. We found that my second favorite flower, our daffodils, were fully in bloom and looking beautiful and so I decided to sit on the deck with Molly for a bit.

There is something magical about our back yard. Despite the work it needs and the fact that we have college student renters for neighbors all around us, it is so peaceful. There are birds abound and rustling trees that instantly relax you. We recently had a new deck installed and it is just glorious for sitting outside and appreciating nature.

 After a few minutes, I heard our resident woodpecker go into action on a tree. I think they are the coolest. Next thing I know, I decided to lie down on the new deck, in my pajamas, with Molly sitting beside me. We were looking at the perfectly blue sky and all of a sudden it hit me: God was there. All of those things I noticed beauty in this morning? That was him, his creations.

It was almost as if he was telling me “”I’m here. Don’t give up. Here is the beauty in this day for you.”

And just for today, that was enough.

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