Category: Chronic Illness

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Lung Days

99% of the time, I live quite normally. As I noted on my home page, the whole point of this blog and project is to encourage people with chronic diseases and incurable conditions to find life in their days and do what they can to find joy in things. I went from being miserable and caught up in the fear and anger that goes with such a diagnosis to living again, upon hearing the song “So Alive” by the Goo Goo Dolls. No matter how you feel about the band, I know what they did for me. Most of the feedback I have been getting about these posts has been positive so far, and I appreciate that. But there have been a few naysayers who don’t like the Goo Goo Dolls or the perfume I wrote about last time or whatever.

Those people either aren’t reading the posts, are reading them but not getting the point, or are reading them, getting the point, and are simply trolls. I respect the opinions of you, my readers. But this is not a space for negativity and nastiness, and I will not tolerate it. Want to be that way? Move along. There are plenty of other websites and blogs out there. You are wasting your own precious time reading something you don’t agree with, and those of us who probably don’t have a lot of time left certainly don’t have it for you.

Now that I’ve made that statement, I will move on to the point of this post: lung days.

Lung days are days when I am forced to be aware of my condition, when the disease announces its presence and reminds me it is always there. Last Sunday was such a day.

I went to OrangeTheory that morning, feeling very good after a solid night of sleep and lots of hydration. I started on the rowing machine and did very well. Then I moved to the floor, where we were to do planks, alternating shoulder touches while in the plank position, then double crunches. My heart rate was up because of the rower, but I got through the first round of the exercises with only a minimal amount of pressure in my chest area. During the second round, I felt as if all the air was being squeezed from my lungs, and when I flipped over to do the double crunches, I felt the blood rush to my head and more pressure in my chest. And on the third round, the pressure became too much and I blacked out. I was only out for a few seconds, but it was enough to scare everyone around me and embarrass the heck out of me.

With pulmonary hypertension (and the valve disease it has caused in my case), certain movements can cause this to happen. I was told never to do chest presses while laying on a bench. At least not with heavy weight. I have to limit overhead presses too. I have trouble with pretty much all inverted yoga poses, including down dog if I hold it too long.

I put a lot of strain on my arms when in a plank position, and my tightened core also diverts blood back through my vena cava to the right side of my heart. The pressure becomes too much and my heart can’t pump enough oxygenated blood (thanks to the narrow vessels in my lungs), or compensate for the increased pressure. I get dizzy, my vision gets fuzzy, and everything goes black. This is really the first time it’s happened; I have come very close to passing out in the past while doing the chest presses during Body Pump before being diagnosed many years ago.

The OrangeTheory instructor was wide-eyed when I returned a few days later and made a modified routine for me. So did the instructor at Crunch Fitness today. It’s kind of embarrassing. And it’s another sign my disease might be progressing.

Or maybe I just worked too hard that day, and the disease is unchanged.

Those of you with chronic conditions understand how frustrating limitations can be. But despite the emotions that go with having to modify my routine while others carry on getting stronger and more fit, I have learned to feel the “twang” of fear and sadness, then let it go by. I decided to keep going to the gym and keep race walking and hiking despite my slowness.

It would be easy to back down in the face of this new development, to retreat back into that place of darkness and fear. But the song “So Alive” is not about that. It always comes to mind when I am challenged with a new symptom, along with other songs from the “Boxes” album. “Over and Over”, “Long Way Home”, and “Soul in the Machine” can all set me straight and give me courage to push onward.

If you want to exercise, please make sure it is okay with your doctor first. Although I am a nurse with many years of critical care experience, I am not qualified to decide what you can and cannot do. My own doctor advised against swimming, pressing weights overhead (or doing chest presses with heavy weight), and avoiding high altitude. But studies have shown exercise to be both mentally and physically beneficial in pulmonary hypertension.

I will keep doing what I do and will try not to scare any coaches, gym instructors, or fellow hikers anymore.

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Feeling Alive: Kat von D Perfumes

Kat von D’s “Saint” and “Sinner”

Whew. As I type this, my eyes are grainy and tired from waiting for my computer to do some updating and writing future posts during that time.

Although I have been dealing with a chronic spending and money management problem for years (since about age 12), there are some times when being pragmatic has to go out the window for the sake of feeling alive. Because when you have a chronic illness, you are not guaranteed many opportunities to do so. Sometimes I purchase things I don’t need, and spend money that really should be going elsewhere. But I rarely regret my purchases.

Two of the things I love are in the photograph above. “Sinner” and “Saint” travel sized perfumes by Kat von D ( http://www.katvondbeauty.com ).

Last year, I wandered into Sephora for something else when I spotted a magnificent bottle on display at the entrance to the store. It was the full-sized bottle of “Saint”. The bottle intrigued me. I had never seen anything like it. So, being the impulsive/compulsive shopper I am, I grabbed one. It smelled terrific, and I only buy one perfume per year and that year was up. So I got in line to pay for my wares, including the item I had gone there for and a few other things. Sephora does that to a woman.

I promised myself I would only choose one of Kat von D’s two perfumes, the other being “Sinner”, with an equally ornate but black bottle. While in the checkout line, there was a young girl dressed in Goth style makeup and clothing. I overheard her telling someone else she did not like “Sinner”, so I was confident with my choice.

But I hadn’t even tried “Sinner”. Once home, I found myself becoming more and more curious about it. A few days later, I was back at Sephora testing “Sinner”…and I loved it! Later that day, I had TWO very ornate perfume bottles on my dresser, and I had my choice between which one to wear.

My “perfume year” is up once again, and I still have the ornate bottles sitting on my dresser, half full. The reason I only pick one perfume per year is that I am forbidden to wear perfume in the workplace, and I work a lot. I wear the perfumes on my days off, but there was far too much in each bottle to go through it all in that short time.

So this year I decided to actually BE more pragmatic about my choice and go with the travel sizes. But I am not going to toss those ornate bottles anytime soon. They are simply too pretty, and I need beauty in my life.

Even with lung disease, most days I can tolerate perfume as long as I don’t put too much on. And before I sat down to write this (after I took the photo), I opened “Sinner” and spritzed it on my forearms. It is totally wonderful, a small pleasure that has elevated my mood and made my day a tiny bit better.

For me, this is money well spent. In time, there will be medical bills and expensive medications and maybe even disability to worry about. Some say I should be saving all I have for that time. But I feel I need to LIVE during this time, being as pragmatic as possible but within reason. There will be plenty of time for seriousness later, when I can no longer do the things I love. Even when that time comes, I vow to still find things I love and adjust them to my capabilities. Life is meant to be lived, and these little perfume bottles will help me do that in a small way.

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Broken

I’m sitting in my recliner chair thinking about what didn’t happen yesterday.  Right now, I should be at the whirlpools along the trail near the Whirlpool Bridge, in Niagara Falls.  I should be sore and shaky as I take photos of the area.  My legs should be heavy and crampy and my mind should be blissful as I drive home, the Buffalo Half Marathon high in full swing.  I should have the shiny medal with the stars and stripes around my neck.  I should be pumped, knowing I walked the streets the Goo Goo Dolls walked as kids and teenagers, or that I’d just finished what is known in the running world as “America’s Best Race”.

Financial troubles are the main reason I couldn’t go; I could not pay for the downtown hotel.  That was a self-induced problem I created with my out-of-control spending addiction.  Also, I am facing unemployment.  Whatever money I might have must be saved for my day of doom.   I am about to lose everything.

The other reason is my illness. My body has become weak over the last several months.  I cannot even go on my beloved “easy’ 6 mile hikes every week anymore.  I tried a few weeks ago, and was burned out two miles in.  And I am lucky if I can go a mile around the high school race track without my legs and lungs burning.  One mile on the track is much easier than one mile on the street.

This time last year I was getting ready to go out to Seattle for the Rock and Roll Half Marathon out there.  I was in the later phases of training, and I got through the race no problem.  And I actually had money to spare.  Because of extreme irresponsibility (more so than the illness), I let myself go and am now in the most serious trouble of my life.

Even with my body being as it is, I would have tried at the Buffalo race.  Whether I got only one mile done, or all thirteen point one, I would have been okay with myself today.  Heck, even if I made it to Buffalo and felt too weak to race, I’d have gone and enjoyed a weekend away if it wasn’t for my money situation.

I am so broken I feel  I cannot be fixed.

When the registration notice comes out for next year’s Buffalo race, I will sign up and try again.  It will give me something to look forward to and work towards.  Perhaps I will sign up for the 10k instead.  But I know I will still be in financial trouble, more so than I am today.  I will have to be more creative finding ways to stay in the town that weekend.  Meanwhile, I’m still broken and will be for a long time.

Please feel free to leave comments or to contact me.

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Hero of the Month: Margie Smith, My Sister

The Edge of Seventeen

My sister truly is a white-winged dove, much like the one Stevie Nicks sings of in her song “Edge of Seventeen”.  And although her struggles began close to birth, seventeen is when things really went south.  It was also when she began to learn strength and resilience far beyond what I can imagine.

Today, there is a name for the anxiety disorder that has plagued “Magg”, as we call her,  since childhood: selective mutism. I had the same condition, but much milder.  I was able to at least put my hand up in class or ask for help.  My fear of having no friends was strong enough to drive me to talk to other kids, though I was still labeled “shy”.  I hated being called “shy” for as long as I remember.  In her relaxed, socially comfortable state—a state she was only ever in around me and our parents—Magg would confess to hating the “shy” label too.  Yet she couldn’t talk to aunts, uncles, cousins, or even our Nanny with the same gusto I could.  This created the illusion I was a show-off at times, even though I was merely being a typical little girl/teenager.

Magg is plagued with epilepsy too.  Many children with selective mutism have epilepsy or migraines, and many have psychiatric conditions like obsessive compulsive disorder.  My sister once knitted a scarf obsessively, to the point where it was taking up considerable space in the living room.  She had to watch the show “Emergency” each night, and no one could say they liked Roy without inciting Magg’s rage.  She always had to be Roy in our little “Emergency games”; others had to be John or Marco or Dixie or Chet.  It got to be very annoying.  She could somehow find the courage to defend her role as Roy among the neighborhood kids, something I never understood.  And in between Emergency games and fury at the others who wanted to play Roy, Sis would have seizures.

Her problems didn’t stop there.  A man targeted us once.  We had met him the previous weekend when he was looking to buy an old car that was parked in our yard.  No longer considering him a stranger because we’d met him before, we were happy to let him play with us when he showed up unexpectedly while we were playing in a nearby field.  He was very friendly at first.  Suddenly, he turned angry with me, calling me a loudmouth and an ugly child who no one wants to play with.  The man must have figured out these were my fears while he was assessing and grooming us.  I can see now it was his way of isolating my sister from me.  He told her she was cute and had better toys.  I ran home crying.

The man kidnapped Magg.  And although he brought her back (or she was found…I am not privy to the details even to this day), the psychological damage he did was devastating and permanent.  That night started a rift between my sister and I, where her life veered away from mine quite suddenly.  We were never allowed to talk about it.  All I knew was she was harmed, all she knew was I wasn’t (although it affected everyone in the family tremendously).  Children with selective mutism are at greater risk for abduction because they appear vulnerable to predators like this man.  My sister’s first real brush with death may very well have been this episode.

The epilepsy was a daily challenge through Magg’s tweens and early teens, the seizures being intense enough to warrant stays in the ICU on several occasions.  Status epilepticus, which is a life-threatening chain of seizures that do not stop long enough for a person to get oxygen, was the norm for my sister.  And in periods between grand mal seizures, she was plagued with petit-mal seizures.  While in college, I witnessed her having ten one day.

In the middle of all of this, our father died suddenly, leaving Mom to bear poverty and my sister’s illness on her own, without her best friend and supporter.  Our father was a hard working deaf man who was loving and funny and cared very deeply for my sister.  I have no idea how Mom fared as well as she did over the following years.  My sister cried so hard the day he died she was nearly writhing.  Aunts and uncles catered to her, handling her gingerly and with great love.

I wasn’t privy to the details of the night the man took Magg, nor was I privy to the severity of her epilepsy.  I am not sure if this was to protect me, her, or to keep me from being in the way.  What I was left with was a vague sense of “something serious” that left me cowering in fear, or underestimating the gravity of what was happening.  I was both sheltered and chastised when it came to  my sister’s problems.  I wanted to help, but wasn’t allowed access to her in the hospital and wasn’t given many updates.  Even after I graduated from nursing school and cared for several patients with epilepsy, I was left putting pieces of the puzzle together (and still wasn’t allowed to be with her during a seizure).

When she was seventeen, my sister had a massive brain surgery done in Montreal at either McGill University or the Montreal Neurological Institute and Hospital, right before her high school graduation.  She was gone for a month.  I dealt with my subconscious worry by throwing huge, impressive parties with hundreds of drunken guests from all over Sydney.  I was a heavy consumer of alcohol by that time and was still plagued with anxiety about not having friends.  I achieved my popularity goals during that stressful time.  Word on my sister’s condition was scanty and, looking back, I was in denial.

When Sis and Mom returned home, it was as if nothing happened in the house (thank God it didn’t burn down!!!) other than one cracked window from where a boy fell against it.  My sister was bald, with a scar on the side of her head.  I prayed she was cured of both her disease and her mutism.  It was so much for her to go through.

She wasn’t.  A few weeks later, while out for an evening drive, Mom and Sis drove near my sister’s high school.  Mom was completely unaware it would have been graduation night, and all of Sis’s classmates were lined up in caps and gowns preparing to enter the gym.  Magg freaked out. Mom immediately regretted going near the school.  Magg went to school with those people her entire life, yet because of the timing of the surgery in Montreal, and because of borderline grades all year, she was unable to graduate.  I was off at a party getting drunk when all this was happening, at what was an initially fun then catastrophic night from my perspective too.  I had caught the boy I was in love with messing with another girl, and a boy who had been stalking me began to bother me again—things I probably would not recall if it hadn’t been for what happened to my sister the following day.  I awakened, hung over, to hear the dreaded snoring breaths of status epilepticus.  My sister had become so upset over the graduation that she brought on a seizure.  I found out last year she might have had a stroke that day.

The scenario was repeated again after a John Denver concert.  It was one of the most inspiring concerts I’ve ever attended; to this day I rank it in my top three.  It drove me to pursue singing as a career.  I wanted to make my living the way Denver did.  I wanted to perform in that very spot someday, before all the people of my hometown.  It set my life on a trajectory with success as a performer as the goal.  My sister was very moved by the show too.  She was all smiles afterward.

Whether it was the lights or the overstimulation of the crowd, Sis once again landed in the ICU with status epilepticus.  It was so disappointing that her surgery hadn’t worked.

But graduation night was a turning point in my sister’s relationship with everyone.  She strongly resented Mom for not waiting until after school was over.  Her anger grew as the years passed, and she seems to have mentally become “stuck” at age seventeen.  It seems to have trumped every other terrible experience she endured: the abduction, the death of our father, the surgery itself.  Mom needed constant reassurance that she had made the right choice.  I was, as Magg often points out, the “well child” who “didn’t have to go through anything and got to graduate with her friends”.

Over the last few decades, my sister has managed to live through a few more status epilepticus episodes, the loss of our mother, and rheumatoid arthritis.  When I was diagnosed with my disease, Sis was concerned—I feel guilty for perhaps leaving her the “last one standing” while everyone else passes on—but immediately reverted to teenage mentality.

“Well it’s about time you caught SOMETHING!” she said.  I spent so much time bracing myself, felt so terrible breaking the news of my shortened life span…and she says THAT?!?

My sister was merely demonstrating her resilience.  I have to pat her on the back for it. Maybe she was the “well/strong child” all along and I have been the weakling.  She is still selectively mute, and she is bound up with rheumatoid arthritis.  As I type her story, it doesn’t even feel true, the kid’s been through so much.  But she has overcome all of it.  Margie Smith fights.  Now I have to figure out her secrets.

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New York, New York

Although the days when I can freely ride the train and take day trips on my own might be limited, I didn’t let that stop me from going to see good old New York City one more time.  I always say “One more time” when doing something I love, because it forces me into a place of gratitude.  It’s not meant to sound dark or depressing.

Yesterday, I traveled to NYC to fully appreciate the Brooklyn Bridge. In 2014, I did the NYC Marathon (walking, of course) however the marathon course barely offers a glimpse of this glorious landmark.  Instead, the marathon treats people to the Queensboro Bridge, the Verrazzano Narrows Bridge, and one of the bridges connecting Harlem to the Bronx.

I rode the Keystone Amtrak to the city from Harrisburg at 6:12am, so I could hopefully catch what was left of morning light shining on the city buildings.  I was a bit late and had to contend with noon sunlight, which can be tricky for photographers.  Nevertheless, I managed to get great pictures.

The bridge itself was easy to find and VERY magnificent!  I am so glad I went.  I totally see why the marathon doesn’t go over it now: the entire walkway is made of slats of wood and concrete.  Runners would trip and get injured on such a course.  It was also very crowded, to the point where bicyclists found it impossible to get through at a decent pace.  I could see the frustration on their faces as the throngs of tourists spilled into the bike lane; walking lane full.  There were groups of French tourists for the most part.  Many looked to be high school students.  One group was blind folded walking in a guided chain, unaware their minds were about to be blown by the views of Manhattan.  It was fun to watch.

I made my way off the bridge and to Brooklyn Bridge Park, where I snapped a dream photo of lower Manhattan.  And I rode the ferry to Wall Street and headed back.

Through all this, my disease made itself known more than it ever has on a trip to New York in the past.  My heartbeat was too fast climbing up to Penn Station when I arrived.  I was hot and exhausted on the subway ride to Columbus Circle.  The walk to Lexington and 59th Street for the number 6 subway was hard.  I noticed everyone wearing jackets while I was drenched with sweat in a thin shirt.  It felt like it was 85 degrees to me.  It was only 61.

At the bridge I was delighted and that made the tiredness in my legs somewhat less noticeable.  But I struggled to walk the half mile from the pier to the Wall Street subway station, then got on the wrong train.  Twice.  My mind gets messed up when I get exhausted like that.  The long subway ride did not provide rest.  I nearly passed out once back at Penn Station.  It was a terrifying feeling.  I got an earlier train back home and fell asleep through New Jersey, which is highly unusual.  And since the trip, my lower body has been a painful mess.  My muscles are full of lactic acid from the high oxygen demand on them and low supply.

But I feel I will be okay to go back there to see Central Park’s fall colors.  I will do what I can for as long as I can with the energy I’ve got.  Pulmonary hypertension is my companion and we must work together.  And we can!

 

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Jill and Jansie

My first night working in the ICU after nearly eleven years went well. I was very nervous going in, with the same feelings I have before going on stage or stepping onto the glass at the Sears Tower observation deck, the Chicago streets 100 floors below me.  As in those two situations, I boldly went ahead with my new job.  Stepping through the ICU doors was an act of gritty courage.

My preceptor and I were assigned to two women I’ll call Jill and Jansie (Jansie is the name I chose for my novel’s main character).  I will muddy some of the details for the sake of patient privacy.

Jill was a twentysomething woman who had taken an overdose and was on a ventilator.  She was found unconscious by her aunt.  They were supposed to go shopping together and Jill didn’t show up.  Jill’s boyfriend alerted the police in the meantime to go and check on Jill, based on a cryptic text she had sent him.  Jill had a history of addiction to various drugs.  Her suicide note stated “I’m tired of fighting”.  When I entered Jill’s room, I saw a tiny young woman whose size and pretty face belied the rumors of her violent nature.  She was adorned with tattoos of roses and butterflies and messages of encouragement.

Jansie was in the adjacent room. She was middle-aged and had suffered complications following an orthopedic procedure.  The root of Jansie’s problem turned out to be pulmonary hypertension and mild congestive heart failure.  This was all new to Jansie, who was crying while trying to watch the Olympics to distract herself when I entered her room.  Jansie’s first words to me were an apology for crying and an expression of great fear and frustration.  Her entire life had turned upside down in the past month, and she was fearful of both death and burdening her wife.  Her feelings were amplified by new, chronic pain from a neck injury.  Several times throughout the night, I found Jansie sobbing.  She expressed fear that she will never be the same and asked why this was happening to her.

i felt a bond with both women, especially with Jansie.  I remember the flood of terror that bowled me over when I was first diagnosed with PH.  My own chronic pain from nerve compression and arthritis in my neck struck in 2015 and stayed with me, adding an even darker shade to life.  It peeled my fingers from the edge of the cliff PH had thrown me over, and I went into emotional freefall.  I shared my experience with Jansie, with the hope she’ll see I’m able to live a fairly normal life five years into my diagnosis.  I caught a fleeting look of reassurance on her face, and she stopped crying.  I even got a few laughs out of her with my crazy antics (“You can be G.I. Jansie in the war with your fear of PH.  You can even shave your head like Demi Moore if you want!”). Then the next wave of shooting pain would hit and take her down again.

Jill reminded me of myself, as I was three weeks ago.  The police came to do a wellness check on me.  My bank notified them I felt like harming myself over my financial situation.  I was in a dire panic that night, beating myself up for what I’d done, angry as to why I have compulsive and addictive tendencies, afraid of what I’d gotten into.  I felt hopeless and saw no way out.  Jill also reminded me of two young women–one of them a teenager–in my recovery group.  Those ladies are struggling with drug addiction, and as time passes, two kind but hurting souls have emerged from under their anger.  My addiction is overspending, but I do it for many of the same reasons: to deal with “something missing” and to make reality disappear for a while.  Without it, my anger and panic flare.  I suspect there is a wounded girl under Jill’s violent facade, and I know how “wounded” feels.  Mental illness and addiction are two highly stigmatized problems, and intense shame goes with them.  I could feel much of Jill’s emotional pain.

Perhaps my problems can offer rays of hope for the people I will take care of in the ICU.  Maybe they’ll see I am the type of person who doesn’t stop, and it’s possible to push forward with life despite an incurable condition, pain, and living without my “substance”. Maybe they will look at me and see someone making the best of things, putting one foot in front of the other, one day at a time, and see that I embody possibility. I am “tired of fighting” most days too, but I have learned to keep moving and working and learning from my experiences.  I hope my patients will see that.

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Stuck In A Moment

My goal for this blog/website is to help people live their best lives in the face of chronic or incurable conditions.  To improve my skills, I chose to enroll in a life coaching course. The course I chose is “Life Coach Certification (Beginner to Advanced)” by Kain Ramsey.  The session I’m currently working on involves a story about a man going about his business then suddenly falls into a deep hole.  He fights to get out of the hole at first, but gets weary from his efforts.  Depression, doubt, hopelessness kick in.  He is too proud at first to call for help.  Then a therapist happens to walk by, then a doctor.  I imagine the former offered a form of cognitive behavioral therapy (CBT), and the latter some antidepressants or anxiolytics.

The third person to come by is a friend or classmate who jumps in the hole with him…but reveals how to get out because that person has been there and can relate.  Such is the essence of life coaching.

I’ve mentioned a thousand times I am a big (but recent) fan of the Goo Goo Dolls.  I am also a huge fan of U2, and for over half of my life.  U2 has a song called “Stuck In A Moment”.  Bono wrote it about Michael Hutchence of INXS, a good friend who profoundly affected Bono’s life.  Hutchence was in the type of hole Ramsey describes.  Only he didn’t make it out.

The reason I am writing about this dark subject is because a week and a half ago, I nearly got stuck in a rough moment–forever.  Not only do I have pulmonary hypertension and fibromuscular dysplasia; I also have severe depression, anxiety, and addictive/compulsive behavior.  The latter got me into very serious trouble.  My issues with depression and compulsive shopping preceded any other problem by decades.

I binged on spending between September and the first week in January, sometimes several days in a row, and over $200 each time.  I knew I was headed for trouble, yet I felt some force was driving me to shop, to fill the holes in my life with “things”, to enter stores and not fight this force, even though I felt like a failure.

On January 12, I started working with a debt management company and their initial payment was $700.  That amount was taken out on Jan 15, along with my $412 retirement loan repayment.  I anticipated these.  What I didn’t realize was I’d scheduled many credit card payments and car payment all for that date.  The debt management rep warned me to cancel these, but I forgot (thank you, gabapentin, for messing with my brain).  I also made arrangements with the bank so I have limited access to cash, and no more debit card.  It’s a steep learning curve with no overdraft protection anymore.  When all was said and done, I was $1190 overdrawn, and there was nothing I could do about it.  The bank threatened to shut down all my accounts permanently and turn me over to collections.

I was very upset talking with the bank reps, trying to explain my mistakes and eventually telling them I am in a recovery program with people recovering from drugs and alcohol, to learn the tools they are taught and get help.  I spoke of the hopelessness of my problem; how “this keeps happening no matter what I do”.  Next thing you know, the police were at my door for a wellness check.  The bank rep put another rep on the phone during our conversation…while she went to call  911.  I was going to kill myself.

The following day, I confided in a few close coworkers, who then got concerned and went to management.  Management went to Human Resources, and now I have to jump through hoops to keep my job.  I must go to mandatory counceling, with a counselor who is “in the system” and chosen for me.  Meanwhile, I set up an arrangement with the group of counselors my psychiatrist recommended, so I am seeing TWO separate therapists in response to this emergency.  I am only allowed three “free” visits with the one arranged by my employer.  Then I’ll have a $90 copay, regardless of who I pick.  And when cash is already an issue…

Anyway, I believe in honesty and transparency, so I chose to share this with you, my appreciated readers.  This issue is proving to be MUCH harder than dealing with the PH and FM.  I might have even forgotten about them as all the mayhem was happening.  Sometimes emotional turmoil is worse than physical illness or pain.

For now, my plan is to a) not spend at all for the month of February, except for cat food/care, groceries, gas, and utilities, b) return to SMART Recovery meetings, church, and social outings with Meetup groups and c) practice mindfulness each day.  We’ll see if I can stay off the ledge.  I am never really that far from it, even on good days.

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Flowers and Orbs

I don’t care what people say, home décor can affect your mental and physical health.

Last spring, I got a tattoo on my left inner forearm stating “Find the Beauty”.  I placed it there to remind me there is beauty in every situation and it’s my job to find it.  Not merely search for it.

I’ve told the story many times, ad nauseum for a few people, but the song “So Alive” by the Goo Goo Dolls cut through my very thick, dark wall of fear and anger in late 2016.  I went to my first Goo show in Hershey that fall, and by the end of the night I was a die hard fan.  Just like that.  It was an amazing experience.  The other fans are beautiful people. John Rzeznik is one of the most beautiful men I have ever seen.  Robby Takac is always pleasant, and his pictures on Twitter and Instagram show how fun-loving he is, even off the stage.  He seems really interested in everything and engaged with life.

I chose to disengage with life in 2015, when the high and distraction of finishing the New York City Marathon despite my lung condition wore off.  I was hit with severe pain in the left upper back, down the arm, and left chest area.  I’d had weakness in my left arm on and off for a few years, which I now realize was related to the vertebrae in my neck.  I was demonstrating proper burpee technique to a coworker on Christmas night.  Two days later, I was plagued with the most incredible pain I have ever felt.  By New Years Eve, I had been awake three days straight and my heart rate was in the 130s at rest, all due to the pain.  Each day I was at the emergency room or the chiropractor; nothing helped.  Finally, on January 5th I had an MRI.  It showed moderate to severe arthritis with bone spurs impinging on all the nerves to my left arm.  Nothing they can do about it either.

I was started on Gabapentin, which gave me a lot of relief.  But the pain had sent me into a downward spiral.  Like water as it gets closer to the drain, I had begun a much faster descent into the despair brought on by my lung diagnosis two years earlier.  But I woke up at the concert and realized I hadn’t been expecting such a profound experience.  Therefore, there MUST be beauty everywhere.

In 2011, I met Bono.  It was serendipitous.  So few miracles had happened in my life, this one blew me out of the water.  Later, I realized miracles happen every day if I look for them.  Only I would forget to look.  And when diagnosed with my PH, I lost sight of them altogether.

The tattoo saying “Find the Beauty” will always be with me.  But now that my apartment is cleaned up, I have chosen to decorate it with some of the prettiest things I can find.  The nicest of my treasures have been the flowers and orbs I found.  I got the idea for orbs from my Christmas tree: some of the balls did not have a Christmas theme, and were labeled as “orbs” or “spheres” in the catalog.  I decided to leave the prettiest ones out, and I bought ornate bowls and baskets for them. They are placed in various parts of my apartment easily seen from wherever I sit or rest.

During my cleanup, I found several vases left over from flowers sent to me over the years.  I bought gorgeous artificial flowers and stones, and put them in the vases.

All of this makes a huge difference in how I feel when I am at home.  Finding beauty takes no effort behind my front door anymore, and I am more at ease.

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Breathing

Oxygen.  It’s a wonderful thing.  We need it to live.  It was the very first drug we learned about in nursing school.  A drug, because an order with specific parameters is often placed for patients in your care.  It is used to treat a problem.

Like anything else, too much oxygen can be dangerous. Free radicals and toxins will be released, and will damage you.  We see this in preemies in neonatal units: they can go blind from too much oxygen. If you have severe lung disease, the carbon dioxide level in your blood may be chronically high.  This happened to my mother as she approached the end of her life. Your brain learns to stop looking at high carbon dioxide to stimulate breathing (which is what drives respiration in healthy people).  “CO2 retainers”, as we call them, rely on hypoxia to prompt breathing.  Administering too much oxygen to a person with this condition will shut off respiratory drive.

You can indeed overdose on this wonderful thing.

Then there’s the opposite problem: not enough.  As I type this now, I am recovering from scooping the litter box.  For some reason, this task is very demanding.

Last Monday, I had a much more serious incident.  I’ve been dealing with chronic laryngitis and a partially paralyzed vocal cord for several years.  The laryngitis had gotten markedly worse in the past few weeks, to the point where I can’t carry on with my comedy routine or my YouTube videos.  It is difficult to communicate with patients, especially at the end of the shift, because of the dry hospital environment.  Monday, I lost my ability to speak altogether, and my ENT in Philly was able to see me urgently that afternoon.

I booked the 12:22pm train out of Elizabethtown, but got distracted checking Twitter and watching recaps and snippets of the Goo Goo Dolls’ shows in Las Vegas that weekend.  It was suddenly 11:50, which meant I had to rush.  My bad.

I felt fine as I raced east on routes 283 south on 230.  I was grateful for every green light and irritated with every slow driver.  I arrived at the train station with minutes to spare…only to discover there was nowhere to park.  It was 12:20.

I had to park at Masonic Village.  I could hear the train whistle as soon as I got out of the car, and I ran.  I sprinted hard, large purse over my shoulder, coiffed hair blowing behind me, wrecked.  The train rolled into the station.  I pushed harder.  And harder.

As I approached the tunnel, I felt the strength leaving my legs.  My breathing suddenly turned to gasping.  When I attempted to climb the very steep stairway up to the platform, my legs gave out completely and I had to pull myself up with my arms.  i signaled to a woman at the top, who was looking at her phone screen.  She gave me a puzzled glance, then looked back at her phone and got on the train.  A conductor asked me if I was okay.  I told him “No” as I mustered the strength to stand.  My body was shutting down.

Once on the train, my gasps caught the attention of other passengers.  My oxygen saturation was 90%, heart rate 122.  Those readings were after I’d recovered a bit.  My arms and legs felt heavy, and I began coughing.  It dawned on me I should never have boarded the train but should instead have called 911.  You don’t think straight when your oxygen level is low.  I was as close to passing out as I have ever been in my life, and it was terrifying.  For the rest of the day, I was spent.  I prayed there would be open seats on the SEPTA bus in Philly, for I was too exhausted to stand up long.

Running for a train, riding a bus, and scooping a litter box should never trigger dread or phobia, but it’s the second time I had this experience with the train (the first time was much milder), and now I’m fighting fear again.

Most of the time, even when short of breath, my oxygen level is “good”, reading 95-98%.  The reason why I still get winded at these levels is because of my heart.  My scarred lungs, asthma, and (especially) pulmonary hypertension have placed great demands on the chambers and valves on the right side of my heart.  So while I was struggling to suck in breath on the platform stairs, blood was flowing backwards due to a dysfunctional heart valve.  My muscles shut down because my body was preserving itself.  Not enough oxygenated blood was getting through to the left side, where it goes out to the body.  My muscles and gut were starved of the good stuff.

Scooping the cat litter requires bending at the waist for several minutes.  This causes an increase in blood flow to the heart and, in my case, causes venous pressures to shoot up.  I see spots and rings in my vision, and I feel a lot of pressure in my chest.  I then become short of breath and have to sit immediately.

In summary, my lungs and heart have had a very bad week.  But I draw on the inspiration I got from the Goo Goo Dolls’ “Boxes” album again, and I am reminded there will be times when I must adjust to new normals.  Whether these incidents are indicators of my condition worsening, or simply a rough few days, I choose to keep moving forward and do the things I do.  Even if I must limit those things to sedentary activities ( like working on my novel, or blogging).  Amazon’s Alexa helps me with the housework, telling me to stop and break every twenty minutes.  I refuse to cave into fear.  The “So Alive!” tattoo on my shoulder, the “Help people.  EVERYONE!” tattoo on my right forearm, and the dragonfly on my right ankle are doing their job to help me push through times like this.  I’m still very much alive, I’ve chosen to reach out and help people despite feeling crappy, and the dragonfly reminds me I am resilient and strong.

One day, you will likely see me with an oxygen tank, riding a scooter in the grocery store.  A tough thought for a multi-marathoner, Appalachian Trail hiker, and regular Gold’s Gym member.  But I will, as John Rzeznik sings in “Long Way Home”: “Light up the darkness/take what you’re given/it might be frightening/but it’s amazing”.

Frightening is an understatement.  But as Joyce Meyer teaches at her conferences: “Do it afraid”.  Because by pushing through while trembling, you become a conqueror.

Check out Joyce Meyer’s website for books like this one www.joycemeyer.org

Thanks again for reading my blog and visiting these pages.  It means a lot to me.  And feel free to check out my So Alive Project Facebook page.  I also host a life coaching website and YouTube channel called the Pragmatic Princess (www.pragmaticprincess.com)

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Grateful

Long before I developed the chronic medical conditions I have now, I was consumed with other concerns. It doesn’t take a bad diagnosis to make you go into a tailspin.  Anything can take you by surprise and send you reeling in a new direction, one you hadn’t planned to take.  One that throws you for a loop.  A road you avoided, but are now forced to explore.  Examples include–but are not limited to–losing your job, filing bankruptcy, losing a loved one, economic downturns, betrayals, and natural disasters.

I honestly don’t know why I had depression and anxiety most of my life, and why it led me to do some of the things I did.  Addictive/compulsive behavior got me into a lot of trouble, starting at around age 17.  At first, I drank a lot.  But when the partying stopped, other addictive behaviors took over.  Like binge eating, compulsive shopping (to the point where I landed in bankruptcy court and faced the humiliation of repossession.  I lost friends, boyfriends, etc., to this behavior).  For many years, it was the primary issue I had to deal with.  Even today, I battle many temptations and compulsions.  Whatever restraint I had before my pulmonary hypertension diagnosis evaporated in the face of my eventual death.  I stopped caring.  Just like you can stop caring when faced with any crisis.  Only now I have to deal with the PH, the FMD, and the consequences of my indulgences.

So what can be done in this situation?  Medical bills on top of consumer debt on top of anxiety meds on top of overeating?  Seems impossible.

I can be grateful.

Forcing myself to appreciate my life, to stand back and look at how good I have it compared to some people, and even at the time I’ve been given beyond what I thought I would have, takes my mind off my negative thoughts.

It’s hard to be grateful in the midst of a crisis, when you are scared to death or feeling like you aren’t in control.  But it’s a choice.  Find something to appreciate.  It may take some effort, but you will.  If you have a dog, for example, pet him.  Look at his eyes.  Notice how he comes to you, how happy he is to see you no matter how dark you feel or nasty you have been.  He doesn’t care.  He loves you as you are.

Or consider the homeless people.  When I went to Boston to see the Goo Goo Dolls a few weeks ago, I came upon a woman in the train station who was curled up in the corner with a sign saying “My name is Amy”.  I didn’t read beyond that.  She was emaciated, maybe 18 years old, pale, and quiet.  She had marks on her face you sometimes see with methamphetamine use.   I said hello to her, mostly to help her feel acknowledged and visible.  She probably feels pointless, ashamed, and dirty.  Regardless of Amy’s reason to be in the train station begging, she is worse off than me.  I felt great compassion for her, drug addict or not.  Though I was still floating and happy after meeting John Rzeznik, Robby Takac, and Korel Tunador (and several others who work for the band, and members of the opening band as they passed the line), I stopped for a minute to consider Amy.

Of course, I can easily spot people in need and am much more open-minded after a good experience.  When down, I have learned over the years that acting like I care makes me care.  Acting grateful makes me grateful.  And that changes my entire outlook.  So each day, no matter how I feel, I choose gratefulness.