For Everything There is a Season

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

Category: chronic illness (Page 1 of 13)

Eight Months

September 30, 2020 / / 2 Comments

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


Month eight.

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

Weddings canceled

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

I haven’t even begun to scratch the surface.

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

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

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

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

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

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

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

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

Is this what we have been reduced to?

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

Jesus happened.

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

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

Yes, Hebrews!

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

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

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

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

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

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

On Illness and Bravery

August 3, 2017 / / 3 Comments

I randomly picked up my husband’s most recent copy of Time magazine this morning to flip through while I was eating lunch. There was an excellent essay written by Josh Friedman, an American screenwriter, entitled, “It’s OK To Be A Coward About Cancer.” It grabbed my attention for several reasons: I am a 21 year cancer survivor, I currently spend every day battling an autoimmune illness, and I’ve been thinking a lot lately about what it means to be “brave” when struggling with an illness.

The essay starts off  with Mr. Friedman discussing Sen. John McCain’s recent brain cancer diagnosis and the subsequent tweets from well meaning colleagues about how Sen. McCain should give his cancer “hell” as well as other encouragements to “fight.” Mr. Friedman explains about how this “tough guy” narrative is “seductive” as it suggests we have control over our fates and that we can will cancer away. He continues on to explain that, “courageousness is a standard that no sick person should feel like they have to meet.” Mr. Friedman then goes on to briefly explain about his own personal run in with cancer and how he dealt with it…

“Before the surgery I spent most of my time crying. Well, crying, rocking my son to sleep, crying more and then taking Ativan so my wife could rock me to sleep. When I woke up after the operation, the tumor was gone. But the feeling of cancer was still inside me. My body was now a sinister stranger. It had betrayed me; it had snuck up and tried to kill me. I would never trust it again.

I banned my friends from visiting and spent my recovery staring out a hospital window wondering if I’d ever see my boy grow up. In my more optimistic moments, I decided I should quit writing the scary-robot show before I’d actually started. It all seemed ridiculous and disconnected from my life. Besides, no one would be mad at me if I just stopped.

Not exactly a profile in courage.Not even in the most favorable of lighting.”
                                                                         
 – Friedman, Josh. “It’s OK To Be A Coward About Cancer.” Time Magazine August 2, 2017: Pages 21-22. Print.

FINALLY.

Finally someone being real about the experience of illness.

I am going to preface the rest of what I have to say about this topic by clarifying something for those of you who may not know me in person. In general, I am a very positive and optimistic person. Sure, I have my moments, sometimes even hours or days of feeling sorry for myself but overall, I keep things pretty upbeat. And that is not by accident either. I work hard at it because I feel strongly that maintaining a positive attitude has a profound positive impact on my physical symptoms.

However what I have been learning about myself lately and I suspect that this is true for many other people, is that I spend a lot of time and effort being “strong” or “brave.” I did so 21 years ago when I went through cancer treatments and I do so now battling Sjögren’s syndrome. It is what is expected of those of us, living in this society, with a life threatening or chronic illness. Being strong and courageous is what you’re supposed to do and being weak is just not acceptable.

You’ll get through this; you’re tough.
You have to stay positive.
You can’t let this thing beat you.
Stay strong.
You’re so brave, I could never do what you’re doing.
(By the way, bravery has nothing to do it. Those of us with illness have no choice in the matter).

Those of us waging the daily battle against a chronic and/or life threatening illness hear these messages every day. We hear them in the media, from our healthcare providers, and especially from family, friends, coworkers, and everybody else in our social network. What are we supposed to say in response to these well intended words of support? We know that all these people (well, except for the media maybe) have our best interests at heart. They love us. They want to do everything they can to support us. They mean well.

In all honesty, people who are going through the battle every day DO need to hear some of these types of messages. But we also need to hear that we can be honest with our feelings about being sick and that we are accepted as we are, even if we are not feeling strong or brave. We need people to lean on and to hear our fears and anxieties.  We need to meltdown. We also need to hear things like:

This must be scary for you.
It’s OK to cry.
This totally sucks, doesn’t it?
You don’t need to keep on a brave face for me.

Most importantly, we need people to bear witness to our experience, all of it.

As Mr. Friedman writes in his essay, “Because when we glorify strength without showing empathy for weakness, we end up with a toxic version of heroism, one that links bravery to goodness and cowardice to getting what you deserve.”

– Friedman, Josh. “It’s OK To Be A Coward About Cancer.” Time Magazine August 2, 2017: Pages 21-22. Print.

Mic drop.

That’s the thing. Dealing with an illness is not black and white. It is this journey where we may have days of thinking we can overcome all the obstacles being hurled at us and other days where the whole situation looks hopeless. Most importantly, there are even more days where we fall in between those two extremes.

Despite all my medical issues over the years, I also used to struggle with how to speak to someone who had a significant medical issue. As a nurse, I could easily speak with with my patients and their families going through catastrophic illnesses but with those in my personal life going through the same thing? Not so much. It was scary. I didn’t want to say the wrong thing. What if I upset them? What if I said something stupid? What if I made it worse?

Then last year, all of that changed. I had a close friend whom I had been friends with for 30 years. And, I’m only 46, so that is a long time. He had been diagnosed with Stage 4 colon cancer two years previously and things were not looking good. I had been spending time at his home. During one of our conversations I blurted out to him (because we’d been friends for a long time and I could blurt out anything),

“Shit, this must be really scary for you.”

If you want to know what it is like to enter a sacred space with someone, a truly sacred space where you put aside your own insecurities and fears in order to be fully present for someone, acknowledge the fact, out loud, that they will be dying soon.

Don’t run from it.
Please don’t.

Because of all the things I have done in my life, that moment, and all the moments that immediately followed where my friend was able to open up and express all his fears and sadness about leaving his family, his children’s future, and his fears about the process of dying, not only helped him, but forever changed me and the way I go about supporting other people with illness.

I never told him to be strong that day.
I never told him how courageous he was.

I just gave him permission to be human: to cry, to be pissed off, to be scared.

Since that experience, I have had several other instances where in trying to support someone with an illness, I have tried to not use the courage/strength narrative that so many of us with illness hear all the time. And I have to say in doing so, I have not yet had a negative experience or an experience that made me wish I had said or done something different. I am certainly not proficient at it yet. Just recently, I feel like I very much dropped the ball by focusing so much on the “being strong” narrative that I was not fully present to hear what someone was trying to convey to me. It’s not an exact science really, but rather a work in progress.

You, too, can give others permission to be human during times of illness.
Sometimes it’s awkward.
Sometimes it’s scary.
You just have to be brave.

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.

The Value of Hope

May 31, 2016 / / 0 Comments

“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” ~ Orison Swett Marden

I’ve been thinking a lot lately about the concept of hope.

That can be a bit of a dangerous thing when you live with a chronic illness that has no cure, and very little in the way of successful treatment.

But, I have a trifecta of hope happening in my life right now; a process that started sometime in April. This is ironic actually as Spring is a time of rebirth and renewal….a reawakening, if you will.

My trifecta is a combination of three things that I am doing to try and help alleviate my autoimmune symptoms, caused by Sjögren’s syndrome, and therefore increase the quality of my life. I have to be honest, my quality of life was truly beginning to take a nosedive prior to April and after about a year of this happening, it was time for some more drastic measure to be taken, both on my part and the part of my medical team.

The first part of this trifecta was starting a new biologic medication called Orencia (abatacept) on April 6th. It is not a medication for Sjögren’s specifically, but rather one often used to treat rheumatoid arthritis. However, there has been some research published and patient reports that Orencia has helped some patients with Sjögren’s syndrome, especially the symptoms of joint pain and fatigue.

The second part is that I am in the middle of (literally) an eight week Mindfulness Based Stress Reduction (MBSR) course, a program that was founded at UMASS Medical Center in Worcester, MA and since its induction, has helped thousands of patients with a variety of chronic conditions. This is something I have been considering doing for about a year or so and after the third person suggested it to me, I did my research and decided to go for it.

The third is a dramatic change in my diet, which started May 23rd. I embarked on a twelve day whole food, plant based detox cleanse with the sole purpose of trying to settle down my physical symptoms. That will end in a few days and I don’t know exactly where I will go from there, but I imagine that I will continue some version of it since I have already seen benefits.

I did not plan on doing all three of these healing and potentially life-changing things at the same time and to be honest, I would never have planned it this way. I have to travel to Boston for the Orencia infusions, the MBSR class takes three hours on Thursdays, as well as at least an hour a day of “homework” and the diet change? Of Lordy, between the shopping and cooking, that has become VERY time consuming for me. But, I did not control the schedule of when all three happened so I jumped in, trusting that God knew what he is doing.

All three of these things bring a lot of hope to the table for me, something I haven’t had a whole heck of a lot of recently. I know for certain that the dietary changes will help me and the MBSR class cannot hurt me, and my guess is I will experience some benefits from that as well. The Orencia is a crap shoot at best, however I have already experienced some positive effects from it. The real question for me is how much will these life changes help my physical symptoms, both individually and collectively? What if the changes help me so much that I am able to gain most, if not all, of my previous functioning back?

I know, that’s a tall order and honestly, any improvement would be welcome.

But, I was scared.

I was scared to hope.

Why?

Because I have been down that road before. You cannot even imagine (well, some of you can) how difficult it can be to put so much hope into something and not have it work out or have it work out just for a brief time before it is snatched away. And what you are left with is pain, more medical appointments, and disappointment. It can be challenging and heartbreaking all at the same time.

But what is the alternative? Not trying? Not taking advantage of the possibilities that are being offered to you? For me, that is not an option. So onward I went, starting with that first infusion in April.

The problem was, even though I was trying, I kept telling myself over and over that I wasn’t going to get my hopes up…not about the Orencia, or the class, or the dietary changes…none of it.

It didn’t take long though for me to realize that my self-defeating attitude regarding all of this was not exactly helpful. I then found a journal I kept during my Manifestation Workshop at Kripalu in February. The cover said, “Hope anchors the soul”” and I then saw something I had written. It was so powerful.

“I want to manifest good health and wellness.”

I WANT TO MANIFEST GOOD HEALTH AND WELLNESS!

For me, part of manifesting good health and wellness HAS to be having hope. Hope drives me. It is hope that pushes me to spend a whole day venturing into Boston for my Orencia treatment. It is the thing that help drive me through the frustration of learning how to meditate with my MBSR class. Hope is the motivation I need, when I am tired and in pain, to spend two hours in the kitchen prepping and cooking wholesome, nutritious meals.

Hope is everything.

Now, I have opened up my heart and allowed myself to hope, for many things: good health, a less disabling future, and a body that can get me through the day. Maybe I will get some of this, none of it, maybe all of it, who knows. What I do know is that throughout this ongoing process of healing, I will not give up the thought that tomorrow will be better.

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