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

Category: anxiety (Page 1 of 2)

When Grief Surprises You

Maisy waiting in the car with Mom while Dad was getting his Covid shot.
She absolutely loved car rides!

I woke up today with the intent of not letting another day go by without getting our tax information ready for our accountant. I know, you’re probably saying, “But it’s August”!

We file extensions every year because my husband’s business tax information doesn’t come to us until right around this time. Meanwhile, I gather all our forms and work on my medical deductions.

Calculating the medical deductions is getting easier for me every year, but it takes time. It’s best for me to do it all in one sitting as I have to go through multiple sources to document mileage, tolls, parking, deductibles, etc. I wanted to get it out of the way today because I have some extra free time and because September will be very busy for me. I didn’t want the stress of getting it done hanging over my head.

I sat myself down in my office this morning and got to work. I have a system put in place that works for me. One aspect of that system is going through my credit card statement, line by line, for the past year. I do this to look for medical expenses that I paid for out of pocket.

As I was scrolling through my credit card report, I began to get anxious. I wasn’t anxious at all this morning so I noticed it and just kept going. As I continued scrolling, the anxiety got worse and I realized I was on the verge of panic. I have a history of anxiety that recently has been under control, so this feeling was surprising to me.

Since I am armed with an arsenal of coping skills, I knew I needed to stop what I was doing and deal with the anxiety because it was just going to get worse. I put my pen down and did some diaphragmatic breathing.

It didn’t work.

That was surprising. So I moved on to other breathing techniques, including box breathing and 4-7-8 breathing. I did a grounding technique. I got a little relief, but my heart was still racing like crazy and I thought I was going to throw up. For a split second, I wondered if it was something medical, since these symptoms are also indicative of heart attacks in women. But, I know my body. I know my anxiety.

I stopped everything and went through my mind as to everything I had done since I got up this morning to try and figure out what was causing the anxiety. I wasn’t anxious about doing the taxes, but I realized that the page I was on in my credit report was line after line of veterinary charges…

Countryside Animal Hospital
Tufts Veterinary Hospital
Sturbridge Specialty Animal Hospital

And, a host of other expenses for medical and behavioral treatment.

I started to cry; not the tears rolling down your cheeks type of crying, but the chest heaving, sobbing kind.

It was Maisy.

I was still grieving Maisy.

I’ll be honest, this surprised me. Our dog, Maisy, passed away about fourteen months ago and I thought I was on the other side of that grief, as much as one can be anyways. But I knew, with absolute certainty, this was the cause of my anxiety.

Maisy was the third dog we had lost in the span of five years, one right after the other. Dogs are not just pets to my husband and I, they are family and each loss compounded the previous one. I always said I would write their stories for this blog, but I never found myself able to do so.

Even now, I don’t want to get into the specific details of all we went through with Maisy because it was difficult, heart wrenching, and the stress of her illnesses was one of the many causes of me going through a tough mental health crisis. I have worked through losing Maisy, and the loss of Molly and Foxy, in therapy, but while helpful, therapy is not a cure for grief.

There is no cure.

And, there is no way around the grief. You have to walk through it and hope that as you do, the good memories will slowly take over those difficult memories of their illness and subsequent death.

The grief of a beloved pet is a unique one. For me, it has been just as hard as the losses I have experienced with my loved ones. It’s the loss of a companion, a friend, and your source of comfort.

It’s the loss of unconditional love.

Whether it’s the loss of a pet, beloved family member, friend, job, health, etc., grief has no rules that it plays by. It is an experience that we must journey through and weave into the fabric of our daily lives.

One of the hardest parts of grief for me is how it can catch me off guard at the most unexpected times. The other day, I was scrolling through my Facebook memories and there were photos of Molly in her healthier years and it truly brought me joy. Another day, I came upon a video on social media of a purebred husky that was playing just like Foxy used it and the resemblance was uncanny. It made me sad as I yearned for all the experiences we wouldn’t have with her. Last night, my husband and I were watching the end of the Westminster Dog Show and enjoyed watching the final selection, as well as cheering for the winner.

But this morning I was doing taxes, and BAM, there was all my grief over losing Maisy, pouring out like it had happened that day in June 2020. So, I let it pour out. My first instinct was to try and ignore it while pushing on with doing my taxes, but I have come to learn that I need to allow what I’m feeling to be what it is, in that particular moment.

I put my head down on my desk and cried for as long as I needed to. I immediately felt better afterwards. My heart rate returned to normal. My stomach settled down. I had very little left to do to finish the taxes, so I finished them. But then, I felt like I needed to do more with my grief experience. I needed to write. I often ignore this need in favor of getting some other task done. Also, when I do write lately, I have been focusing on journaling just for myself.

This one though, I’m putting out into the world. Because I know you, the people who adore their beloved pets, and the grief we experience when their too short lives end, sometimes after years and years of love and devotion and sometimes just when we start to fall deeply in love with them.

Our pets are such an important part of our story.
Love them.
Grieve them.
Honor them.

Chronic Illness and Fear

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…

Divorcing Sjögren’s

I cannot believe I didn’t blog the entire month of April. I knew it had been a while, but I didn’t think it had been that long. I sat down this morning to do some writing and look over the blog design, as well as my Thoughts and Ramblings Facebook page, and I realized how much I have missed writing. I also realized that last month was the FIVE year anniversary of this blog!

Lots of stuff has been going on. For the past couple of months I have been working vigorously on a few things to help improve my quality of life, physically, mentally, and spiritually. I will be honest, it has been super tough. It usually is when you take an honest look at who you are, where you came from, and where you want to be headed. It has meant being rigorously honest with myself and well, let’s face it, that can really suck sometimes. However, I am now seeing the benefits of all that hard work and I am excited about the future.

It can also be tough heading into uncharted territory in regards to my health. I have had some neuropathy issues going on as well as some possible autonomic neuropathy issues. I am currently on an aggressive alternative medicine course to try and manage those symptoms and if that doesn’t work, I already have a very precise and well thought out traditional medicine plan worked out with my rheumatologist in terms of testing and figuring this all out. My guess is, it will be a combination of both alternative and traditional medicine that will help me deal with this new part of my Sjögren’s journey.

The good news is that I realized yesterday that for the first time since the autoimmune journey began around 2007/2008, this is the most confident I have ever felt with every single one of my medical providers. I have had some great doctors in the past, but at this point I feel like I am being completely heard and I am an active partner with every one of my medical providers. I have ten providers (both alternative and traditional) that I am actively seeing now and I don’t experience the anxiety I used to have. As I have talked about before, I made some difficult decisions last year about switching some of my providers in order to obtain better care and it’s nice to see that those decisions worked out for the best.

Besides the neuropathy pain and dryness issues, I am actually holding my own. My joint pain and fatigue have improved dramatically. I am certain that  the improvement in the fatigue is related to someone FINALLY listening to me and following through about my thyroid and making some medication adjustments, as well as a change in my nutrition. The thyroid is not perfectly regulated, but it is much improved. Everybody kept blaming the fatigue solely on the Sjögren’s when I have also had this longstanding thyroid issue since I had radiation to my neck a million years ago.

Besides working at my nursing job more recently, one of the other reasons I have been off the blog grid is that I have been working hard at changing the way I deal with Sjögren’s and my health. That has been a gradual process for a few years, but I have been looking at it much differently lately. I think I have blogged before that I see a therapist who has experience in dealing with chronic illnesses and we have definitely made progress.

However, things kind of got to the point a few months ago where I was just sick and tired of talking about this illness all the time. I wrote a book about it, I talk about it at appointments all the time, and I was blogging about it a lot. Thoughts and Ramblings, and its associated Facebook page, is not all about Sjögren’s or even autoimmune disease, but that’s the direction it happens to take because so many of my readers have autoimmune illnesses and it is a place to share and exchange good information about the illnesses and their treatments.

And that’s not going to change; but I was at a point where I needed a divorce from Sjögren’s for a while. We all know that it’s more like a separation rather than a divorce, and even the separation can only be partial because this illness invades every aspect of our lives. But I was able to find some separation. I stopped complaining about all my symptoms either on social media or to my family/friends. I stopped doing follow-up appointments with doctors just for the sake of having a follow-up appointment when things had been stable in that particular area. I stopped researching stuff online and lessened my visit frequency to the online Sjögren’s groups. I still took my medications and attended necessary appointments. I was still spending about two hours a day dealing with the illness and its symptoms. But two hours a day was better than four!

I decided that for now, I am not writing another Sjögren’s book.

I felt guilty at first because I know this blog, the Facebook page, and me as an individual have a lot to offer to those suffering from autoimmune illnesses. And, they (and I) will still be here. But my brain cannot be Sjögren’s focused all the time for the rest of my life. I found that when I did do this separation, it was a very good thing. I pushed myself harder, especially at work and other projects, and I found that I can be of use to this world in other ways. I also found that my anxiety lessened significantly, I wasn’t as fearful, and I could cope better with the physical challenges that did come my way.

I have been criticized in the past (even by a person with Sjögren’s), and somewhat recently, for some of the things I say and especially write, in regards to keeping a positive outlook when dealing with a chronic illness. The feedback mentioned that I may not always be realistic in how miserable this illness can be and that not every autoimmune story has a happy ending or a positive lesson to teach. Or I’m told I must have a mild case of Sjögren’s because I am upbeat. I tell them to go read my blog for the past five years and read about my journey. My attitude and disposition is inversely proportional to my physical experiences. I have a positive attitude most days, not because I don’t suffer or struggle, but because I actually get to be alive.

And loved.
And I get to love back.

I know many people may not want to hear this, but I think many times, myself included, we get ourselves so wrapped up in our illness that we don’t see any other possibilities except to be miserable or be a victim. And you know what? I get to do that sometimes. I get to be upset. But the problem is we take on our illness as our identity instead of it letting it be a part of who we are just like being a nurse or a writer is part of who I am. Rather than living my life as a victim, I want to live it as just me. Chris.Those of us with Sjögren’s do not corner the market on pain and suffering. Those of us with autoimmune diseases do not have exclusive rights to the pain and suffering in the world. We all have something, whether it is physical, emotional, or spiritual pain. It has been that realization that has enabled me to recently step out of Sjögren’s and step into helping someone else. It has enabled me to step out of Sjögren’s and step more into the world.

So what can you step into today?

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

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….

Keep Going

There are very few people who follow my blog or who are even in my life who know the extent of the disaster my life was from about 2001 through 2009. I was in a destructive marriage with a man who was abusive, an alcoholic, had PTSD, and was just a difficult person to live with. A man who decided about two years into our marriage that he did not want children. I had distanced myself from some of my family and many of my friends. I held a job that I loved but yet found very stressful. For some of those years I was seventy-seven pounds heavier than I am now. I had a food addiction and low self-esteem. There were many times when I considered suicide and the threat was real enough that I was hospitalized several times for depression. For a period of time, I was even considered to have bipolar disorder and I was trialed on every class of psychiatric medications that existed. The diagnosis was later retracted by the same psychiatrist who diagnosed me and my mood issues were thought to be the beginning of my autoimmune disorder, coupled with significant environmental stressors. Then the physical symptoms of my autoimmune illness began.

2008-2009 found me very sick with Sjogren’s syndrome. I eventually ran out of sick time and FMLA and lost my job. On the day that my ex-husband threatened me and I thought he was going to be physically violent because he was so drunk, I told him we were done. I got divorced and lost my home. I lost one of my beloved dogs. No job, no home, no kids, no health, no marriage…no nothing.

But wait, I did have something. I had God. I had my family. I had a few friends.

I had myself.

So why am I even bothering to tell you all this six days before I marry my second husband? Because I want people to know. I want to tell anyone reading this who thinks that the only way out is through suicide that there is always a better way out. There is help out there. You can change your situation. The feeling of hopelessness you have now does not mean that things can not get better.

My upcoming marriage has stirred up a lot of emotions recently. Obviously that is due in part to the fact that I am marrying this incredible man who is my best friend and whom I love with all my heart. But the emotions are also there because over the past few weeks, I have stopped to think about where I am and how far I have come. Because at some point I stopped letting myself be a victim. I dealt with my depression and anxiety. I saw a therapist. I developed a positive attitude. An attitude that got me through some pretty dark days. I worked on my relationship with God and with myself. Step by step I made changes in my life that enabled me to be a whole person rather than the empty shell of one that I was during those years.

I still struggle with health issues. I still struggle at times with my self esteem. But at the end of the day I like the face of the person looking back at me in the mirror. Sometimes it is hard for me to think back on the past and even believe that was me. However I have to look back from time to time because those experiences have helped make me the courageous and determined individual I am today.

I am at peace.
I am happy.

So please don’t give up. You are worth more than the sum of your bad experiences. God has put you in this world for a reason. The reason may not be apparent to you now. It may never be apparent to you but I promise you, your presence in this world will make a difference to somebody.

Be strong.
Keep going.

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