For Everything There is a Season

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

Category: adversity (Page 1 of 4)

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…

The Jumbled Mess That We Call Life

September 21, 2016 / / 2 Comments

I signed a DNR  (do not resuscitate) order for my dog, Molly, yesterday…

Life has gotten so messy and complicated so quick, it’s a bit staggering. One minute we’re having the time of our lives in Ireland and Northern Ireland and the next, the shit is hitting the fan. It’s almost like the world is playing a cruel joke on us by saying, ‘Here, go have the time of your lives, but be prepared because I am going to chew you up and spit you out when you get home!”

The reality is though, the world (or God) isn’t playing a cruel joke on us, that’s just life: highs, lows, and everything in between, all mixed up into this jumbled mess that one minute has you laughing and the next, has you crying.

As previously mentioned, shortly after we returned home, we got some disturbing news about a member of our family. And then we got hit with some unexpected financial expenses. Can someone please tell me why dental work and car tires cost SO much?? But, my husband and I still had our heads above water.

For me, my head started rapidly dropping below water when I went to my orthopedic appointment yesterday morning and I was told there are no other options to treat a severe problem (an osteochondral defect…if you have experience with this, e-mail me!) with my left ankle, except for surgery…a surgery that has a recovery period of up to six months-three months before I can even work or do anything resembling normal day-to-day physical activity.

I signed a DNR order for my dog, Molly, yesterday…

Surgery is a nightmare for me. I had my gallbladder out last year and I cannot believe I even have to consider the thought of going through that again. To start with, I will have to come off the low-dose naltrexone I take for my Sjögren’s symptoms because it cannot be mixed with narcotics. And we all know I am definitely going to need narcotics, at least short term. Secondly, there is my previous history of blood clots. I am guessing that a pending surgery will require discussion with my hematologist, especially since I will be in a cast post-op and my blood clot risk will be high. And that means blood thinners, frequent blood work, and a lot of worry for me.

So I am doing what every patient who is trying to avoid surgery is doing: postponing scheduling the surgery until I can get a second opinion. Hopefully that will come soon since walking is quite difficult at the moment.

I signed a DNR order for my dog, Molly, yesterday…

This morning’s doctor appointment had me subsequently going to the hospital for multiple x-rays of my back. Right after we arrived in Ireland, I started getting episodes of numbness on one side of my upper back. That was in addition to the pain I’ve been getting in my tailbone and sacrum for months now. Pain that the doctor keeps telling me will eventually go away. We went back and forth about cortisone shots this morning. She wants me to get more shots, this time under fluoroscopy, so we can get deeper into the small areas around my tailbone. I want an MRI to see if we can find out if something scary is going on in there. She says no. But, she does agree to x-ray the part of my back having numbness and sends me off to physical therapy to try and straighten my crooked sacrum out.

I don’t have the energy right now for physical therapy.
But, I’ll go because I think it might help.

So many decisions to make.
So many complicated conversations to have.

Does anybody appreciate how hard it is to stay focused in these long medical conversations when one is feeling overwhelmed? I know some of you certainly can.

But see, I can typically handle all this medical drama. And I can handle it pretty well, with a lot of grace. I am warrioresque like that.

I’m out of grace this week.

Why?

Because I had to sign a DNR order for my dog, Molly, yesterday…

Two nights ago I was sitting on the couch with my husband watching TV. Molly came over, put her head on the couch, and looked at me in a way I haven’t seen before. A look that said, “something is wrong with me.”

She’s fifteen years old. I was told about five years ago that she has a leaky heart valve, tricuspid valve I think it is. My husband and I both knew that she hasn’t been feeling so hot recently. She gets more fatigued on her walks and the heat/humidity we have had lately here in New England has been tough on her. She was panting more than usual. But overall, she looked content and I had made a promise to her, and myself, that I would not go to extraordinary measures to keep her alive at this point.

But what exactly does “extraordinary” even mean??

Yesterday morning I woke up and noticed my husband and Molly weren’t in the bedroom. I got up and my husband, Chuck, came upstairs with Molly. He had taken her down to our spare bedroom during the night to sleep because she was breathing too heavily and he was up most of the night with her. However it was one of those things where it came and went.

Because I had that doctor’s appointment about my ankle I could not miss and he had to go to work, he took her to work with him. She initially looked better, but then every time he took her outside, she would be short of breath and excessively panting again.

I met him at his work after my appointment and called the vet. She was in surgery all day and I was told to bring her in the next morning or if I thought she couldn’t wait, to take her to the E.R.

And that was where I spent the rest of my day.

It was hard, really hard.

They took her right in and checked her out. I got to fill out forms while I waited. I took my forms, sat down, and saw the form where I have to decide if needed, if I wanted her to have CPR. But at least they respectfully put the price of the CPR in parentheses next to the word “resuscitate.” There are different prices depending on how much life support you want them to perform.

You have to be kidding me.

And then the tears came. I knew we were going to face this eventually, but no matter how much I have tried to mentally and emotionally prepare myself, my heart started to slowly shatter into little pieces. A kind looking woman handed me tissues. Her gentle act of kindness was enough to help me pull myself together long enough to check the box for DNR.

Breath, Chris, breathe.

You promised you wouldn’t let her suffer or keep her alive just for your own sake.

Have I mentioned Molly has been my constant companion for twelve years and one of the two loves of my life?

About an hour later I got an update. The doctor thought her breathing was stable. She didn’t see the breathing distress that my husband and I had witnessed. I told her it comes and goes. She tells me her oxygen levels and vital signs are good. Can she have my permission to start an IV, just in case? I give it to her. She also asks for permission to do a chest x-ray and some blood work. I give her that as well.

How much is too much?

When do we decide enough is enough?

I sit there and decide we need to know what is going on and what we are facing. Maybe this is simply a case of pneumonia that can be adequately treated with antibiotics. Yes, let’s do the chest x-ray and labs…see what happens. Maybe even a cardiologist to further figure out what exactly is wrong so we can make her as comfortable as possible with medications. But it’s OK I tell myself, it won’t come to that. The doctor said her physical exam was unremarkable.

It comes to that.

Three hours later, I am brought back in. I am shown the x-rays. Her heart is enlarged, very enlarged. Possible congestive heart failure is mentioned. There are shady areas on her lungs, not tumors, but possibly pulmonary hypertension. I’m a nurse. I know what terms are bad and which ones still contain a shred of hope. To add insult to injury, the doctor took a quick peek at her heart valves. They don’t look none too good either, but I am told that they only way to know for sure is to see a cardiologist and have an echocardiogram done.

How much is too much?

This doctor is amazing. She explains everything in a way that I think should be a model for every doctor and vet in this country. She is not overwhelmed with my questions. She is patient. And she is kind. She asks me about starting Molly on two different medications for her heart and I agree. That was pretty much the point of me bringing her in, to make her comfortable.

I run through my checklist in my head. I developed this checklist sometime last year when I saw how much Molly was slowing down. It’s a guide of sorts to help me (us) determine when we are at the endpoint…

* Is she in pain or distress? No to the pain and the heart meds should help with the breathing distress.
* Is she eating? Yes, very well.
* Can she walk well? Yes.
* Does she enjoy something in her life that she’s always done? Yes, playing with her babies, going for car rides and to the park, spending time with us, cuddling.
* Can we afford her vet bills? Yes, despite the fact they are a killer and we will have to re-prioritize some things.

So, a plan is developed and we are homeward bound, both of us much more fragile than when we arrived. As I am driving home I think about one of the owners and his dog who were in the waiting room with me. I am pretty good at reading people and the read on this man was that this dog was everything, and everyone, to him. You could see it in the way he handled him. There are infants that I haven’t seen handled so gently and talked to so lovingly. If I couldn’t see and was in another environment, I would have thought it was a baby he was talking to.

I overheard the man talking to another woman. I couldn’t believe the amount of serious diagnoses the poor dog had. He sees NINE different specialists. Then I looked over at the dog and I actually had to watch for his breathing because otherwise you couldn’t tell he was alive. He was so listless and it appeared to me, he was barely existing.

Certainly not my place to judge, but it made me realize that was not the condition I wanted Molly to live in. She sees a cardiologist Friday and I am hoping she does the echocardiogram the same day so we can get a handle on knowing what is going on and so we can have conversation and make some decisions what how far we want to take her and at what point we will say enough is enough.

That is life, one big jumbled mess. You never know what the next day, or even hour, is going to bring you. It may bring you to the most beautiful mountains and valleys of Ireland. It may bring you to the heart wrenching decision of checking off that DNR box. Sometimes, you just have to hang on tight and pray your way through the day. Or, stay present in the moment you are in and remember to do the next right thing.

Life can hit us in a way that requires us to weave through it one important decision at a time….one moment at a time.

As I finish this up, I realize that after  a ten hour day, I am done for today. There is nothing else so urgent that it cannot be looked at tomorrow. So I am doing my next right thing for myself and curling up on the makeshift dog bed in the living room with Molly. And, I am going to hang on tight.

God, Church, and People

April 14, 2016 / / 1 Comment

As I’ve posted about recently, I’ve been struggling in the God department lately, more specifically, about where God is in all the messes that take place in this world. On a broader scale, I am talking about ISIS, innocent people being blown up, and children going hungry and being abused. On a more personal scale, my thoughts immediately go to good people I care about going through one crisis after another, without getting a break. And of course, my own struggles with constantly having to deal with daily medical issues and never seeming to get a reprieve from all of that.

My spiritual life has been even more challenged lately as I have found myself, along with my husband, in a dilemma about my (our) church life, something that has been an integral part of not only our individual lives, but our marriage as well.

When I first started going to church regularly and consistently as an adult, sometime in 2005, it was church that brought me closer to God. And I became dependent on that. But over time and especially in the last several years, I have come to learn that my relationship with God is not, and should not be, church dependent. Don’t get me wrong, I am a BIG church advocate. I think churches can be a beacon of hope, strength, and love in a community. I could spend the next several hours discussing with you all the reasons why, if you believe in God, it would be helpful for you to be a part of a church community.

But here’s the other side of it. What happens when church is not going right for you? The reasons can be many, or few. What then becomes of your relationship with God?

The past couple of months have left me with more questions than answers about God, church, and people in general, but this week, I hear God speaking to me. Sometimes I just need to shut up long enough to hear him.

I have been hearing God speak to me through the voices of others and it is starting to shift my perspective about where God is in all of the messes in the world. For example, I see God working through a friend of mine as she makes solid preparations for the future of her and her children for after her husband leaves this world. I see her strength and determination in carrying forward, despite this monumental loss that she is facing.

I hear God in her husband’s voice, my friend; a friend who has been with me for almost thirty years. We have have had the best of days together, him and I, and also some tough ones, the toughest ones being most recently. But it was God who created this amazing person in my life; one who has brought me so much laughter and love. I feel God in the authenticity of my conversations with this friend…the conversations which now include how much time he may have left and how him and his wife are handling THAT conversation with their young daughters.

Most recently, I heard God in a different friend’s voice as well. Her perspective on where God is in all the messes in her own life was the opposite of where mine has been up until recently. She saw the sequence of difficult events in her life as God supporting her and preparing her for her challenges. I’m making it sound more simple than she probably meant it, but I think you know what I am trying to say. Her message wasn’t that God was being punishing or didn’t care, but rather he was putting into place what she needed to get through it all and continue forward.

While listening to her speak, I could truly see where she felt God was in all her messes. It lightened me. It also made me wonder why we, as Christians, are not having these conversations more…the conversations about God. Are we too busy? Or are we so busy just trying to survive it all?

And when I say talking about God, I don’t mean regurgitating scripture over and over again, tossing words around in attempts to get others to subscribe to our way of believing. Or using God as a weapon to bash whatever group of people we feel are violating some Biblical law that man has misconstrued for his own use.

No. I am talking about conversations where we share with each other, on an intimate level. Share our struggles and our strengths. Our weaknesses and our victories. How we see God working, or even not working, in our lives. What our challenges are in leading a good and faith-filled life. What roll does church play in our spiritual life? How important is it? What makes us spiritually fulfilled? To me, those are some of the most important questions.

What are the important questions for you?

“What I Have Learned as a Rape Survivor”

October 5, 2015 / / 1 Comment

I have a new blog post ready to go up and two more turning over and over in my mind, waiting for me to furiously type them out.

All three of them are going to wait.
I came across something this morning online that I would like to share with all of you.

Two years ago this week, two young women I know were raped. Two women who have never met, both between the ages of 18-23 at the time of the incidents. Both live in separate parts of the country. Their only connection is that in the thread of social connections we all have, I know both of them.

The details of their ordeals are not for me to know and/or discuss.But here’s what I can tell you:

1. 1 out of every 6 women has been the victim of an attempted or completed rape in her lifetime.
2. In 2003, 9 out of 10 rape victims were women.
3. 80% of victims are under the age of 30.
4. 44% are under 18.
5. 29% are age 12-17.

This makes me stop and pause. I have not been the victim of a sexual assault. But how many people do I know have been?

I can think of 10 just off the top of my head. And that’s only people I know personally. It doesn’t count all the children and adults I have cared for as a professional nurse. That number is off the charts. It also doesn’t include the people in my life who have been victims and I don’t know about.

More stats:

1. Approximately 4 out of 5 assaults are committed by someone known to the victim.
2. 47% of rapists are a friend or acquaintance.

Rape is not just a stranger attacking you in a dark alley type of violent crime. It is happening everywhere: in our own homes, in college dorms, in the back seats of cars, in bars, at college parties,in churches,  Women and girls (and men/boys) are being raped by not only strangers, but by their husbands, their fathers, their brothers, boyfriends, girlfriends, uncles, and priests.A woman is raped the moment she says “no” or does not give her consent.

**Statistics taken from the Rape, Abuse, and Incest National Network**

Those are the statistics, but my real reason for writing this today is to share, with her permission, a blog post written by one of the survivors I mentioned above. A woman who has taken the worst moments of her life and transformed them into an essay depicting courage, strength, and hope. The essay speaks for itself. It’s only by bringing our hurt and pain from out of the shadows that we can then be a beacon for others who feel so alone. You can find Callie’s post by clicking on the link for her blog here:

What I Have Learned as a Rape Survivor

Divorcing Sjögren’s

May 1, 2015 / / 2 Comments

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?

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