39th Birthday

This entry has been sitting in my drafts for a while.  I had intended to write a very different entry when I started back in February - but then I didn't have the focus to actually sit down and write it.  I wanted to talk about my hopes and dreams for the year ahead and 2020 has slowly crushed all of those.

Thirty-nine, back  in February, was messing with me in a way that I had no anticipated.  And I expect that Forty is not going to be any easier next year.  In fact, 39 was bothering me so much that I decided I wanted to do a big trip for my 40th.  I thought that maybe it could help distract me from everything I expect I will feel about a milestone birthday.  I decided on Hawaii.

Then COVID started rearing its ugly head in the States and everything changed.  Then I was diagnosed with Crohn's Disease in May.  I was also laid off in May due to reduction in business because of COVID. And the hits just keep coming.

 So far, my family has remained healthy and I've found temporary work to keep me afloat while I search for more stable options.  The safety nets put in place for COVID had been extremely beneficial while I've been unemployed.  I've been able to defer my mortgage, student loans, and most of my credit cards until September.  There was additional funding in my unemployment payments until the end of July.  I sincerely hope that Congress gets its act together to extend these benefits for those Americans that still desperately need them.

So 39 has been about surviving.  Here's hoping that 40 brings more sunshine and prosperity.

A Crohn's Story - Part 3: Realities

I've had some realities hit me today in a way that I did not anticipate.  I received my first shipment of Humira from the pharmacy.  I've spent the last few days on the phone with various nurses and PAs talking about what to expect and what I'll need to prepare for my first injection.  But watching all of the training videos and tutorials did not prepare me for the wave of emotion I would feel just unboxing the materials.

It makes it real in a way that nothing else has so far.  My hospital visit, though serious and lonely, still made it feel like it was temporary somehow.  You know, something to get through and then never worry about again - like my other surgeries.  Even the pain I've had since I got out of the hospital seemed short term - live with it until you figure out how to manage it.  But opening this box and realizing I'll have to take this shot every two weeks put it in the same column as Diabetes for me.

Diabetes being something my mother has and has to control through diet and insulin shots.  It's something she'll always have and it's not going to go away entirely.  She's a sick person and the last thing I ever wanted to be was a sick person.  I'm not even sure how else to describe it.

It's real, it's happening, and I don't want it.

A Crohn's Story - Part 2: Diagnosis and Denial

I spent most of the next day waiting for the doctors to tell me when I could be released.  There had been the promise of real food and then the bigger promise of going home if my stomach could handle the food.  So I started with a liquid diet - chicken broth, jello, non-dairy protein drink.   I'd never been so excited for chicken broth in my life.   It stayed down and I stayed pain free.

Then they moved me up to a low-fiber diet.  In this case, it was a grilled chicken sandwich with some roasted carrots.  Again, this was the best chicken sandwich I'd eaten and I didn't even mind the carrots.  They made me wait a full half an hour before agreeing to release me and that was the slowest half an hour of my life.

It felt like Christmas and my birthday all wrapped into one when they finally took the PICC line out.  But that was quickly quelled when the doctors came in to talk to me about Crohn's disease and what to do when I got out of the hospital.

Internally, I was second guessing everything the doctors told me.  I kept trying to think of other things that could be causing my symptoms.  The internet has no end of possibilities for alternate diagnoses and I was convinced that it was a kind of false positive caused by the excessive amounts of Aleve I had been taking for my herniated disk.

I scheduled a second opinion with my dad's GI doctor and he was very patient with me as I asked all of my questions.  He gave me reasonable explanations for why my alternate theories couldn't be an accurate diagnosis and he reviewed the treatment plan laid out by the GI doctor I had in the hospital.  My heart was very heavy at the end of that call - I didn't want to be a "sick" person.

There is a lot of emotional baggage when you're diagnosed with a chronic disease.  The worst was when I read that my condition would be considered pre-existing for most health insurance companies and that I would also be covered under the Americans with Disabilities Act of 1990 .  There is something about being protected by legislation that made me feel helpless.  Your health, safety, and livelihood can hinge on whichever way the political wind is blowing. (And, yes, I realize I'm coming from a place of privilege when I say this.)

A Crohn's Story - Part I: Pain, Hospital Stay, Potential Diagnosis

To be honest, I'd been worried about stomach pain since November 2019 and my doctor thought it might be IBS (Irritable Bowel Syndrome) but, at the time, it was not as important as getting the herniated disc in my neck fixed.  The pain didn't happen all the time, or even after eating the same foods, so I wasn't too concerned about it myself.

Then around February I started tracking when I had stomach pain in my bullet journal.  I combined this with stepping up food tracking in my Weight Watchers app - to see if I could determine causation.  I was also experiencing severe back pain and trouble sleeping, which I thought was unrelated to the stomach pain.  K and I even went so far as to buy a new mattress to help improve our mutual back problems - his improved and mine did not.  I was thinking I might have another disc problem but in my lumbar this time.

In March and April, I started to see a correlation between bowel movements and stomach pain.  This wasn't really a surprise to me, I've been concerned about not having enough fiber in my diet ever since my gall bladder was removed ten years ago.  So I started stepping up the fiber routine to help with the constipation pain I thought I was having.  Towards the end of April, the stomach/back pain got much worse and I realized they must be related somehow - maybe kidney stones or some kind of infection.  So I scheduled an appointment with my Primary Care Doctor.

But before I could get to my first virtual appointment to address the issue, I had the worst pain I'd experienced since my gall bladder went bust.  It actually felt a lot like that pain, except it was lower in my stomach and radiating out to my back.  I could even time it, like with my gall bladder, and know that within a half an hour of eating I would get an attack of pain.  

After one sleepless Friday night, I went to Urgent Care.  They diagnosed me with GERD (Gastroesophageal Reflux Disease) and sent me home with pills to control the acid in my stomach.  I knew it couldn't be GERD, but thought maybe I had an ulcer or something that could be relieved with the stomach acid pills.  They didn't help at all and I spent the next two nights in pain until I finally realized if I stopped eating by 8:30pm I could at least lay down at bedtime.

PICC Line

My doctor sent me for a CT scan and I was willing to pay the out of pocket cost to be seen on Wednesday instead of waiting a week for insurance to approve it.  I have never been so glad I made that decision.  It turns out, I had two abscesses in my intestine and a fistula had formed between them.  My doctor sent me to the ER and I spent the next week waiting to see what the official diagnosis would be.

The doctors at the hospital put me on an antibiotic and a no food/no drink diet.  I had a PICC line inserted into my right arm  - for those that don't know, because I certainly didn't before this happened, it's a tube that is inserted into a vein in your arm (or leg, or neck) that goes all the way to an area near your heart.   So it's important to keep it clean and make sure there aren't any bubbles in the tubing.  There is a fork in the tubing that allows for two points of entry - one was dedicated to TPN (Total Parenteral Nutrition) and the other was used to draw blood or inject medicines. The hospital used this to feed me - using TPN which looked like a weird milkshake in a bag.

TPN is a mixture of sugar (dextrose) for energy and protein (amino acids).  Sometimes they add Fats (lipids), Electrolytes (such as potassium, sodium, calcium, magnesium, chloride, and phosphate are also included), and other vitamins/minerals as needed.  It contains everything a human being needs to survive.  The nursing staff tested my blood regularly to make sure I was getting everything I needed for normal bodily functions and adjusted the mixture from day to day to meet those nutritional goals.  The bag would be delivered every day at 8pm and would run for 24 hours.

TPN Bag

What the TPN did was to allow my bowel to completely rest by not digesting any food at all which, in turn, allowed the abscess to begin to heal.  The first day was pretty miserable because my brain was still sending hunger signals to my stomach, but after a while everything righted itself and I didn't have the feeling of being hungry all the time.  In combination with the hospital no visitor policy,  it made me realize was how much of an event eating food really is.  It's not just about nourishing your body - it's a social event and an activity to stave off boredom all rolled into one.

The whole week was spent mostly alone, except for the doctors and nurses who would stop in, and running all kinds of tests to rule out what was causing the abscess.  My partner, father, and step-father, were all able to drive by and wave to me through the window - K even brought our puppy for a walk where I could see her for Mother's day - but it isn't nearly the same as being able to be in the same room with the people you love.  I know that it was equally as difficult for my family to not be able to visit me and they felt helpless while I was going through all of this.

The Gastrointestinal(GI) Team at the hospital ruled out a troubled appendix very early and mentioned it could be a form of IBD (Inflammatory Bowel Disease) but needed more tests to determine for sure.  I suggested, in vain, that my father had diverticulitis and maybe this was something related.  What I wanted was something that could be treated, healed, and then forgotten - like I'd done with my Gall Bladder, Tonsils, and already the replaced disc in my neck.  What I didn't want was something I'd have to worry about the rest of my life - like diabetes, cancer, or some other disease.

The final procedure to determine my final diagnosis was a Colonoscopy.  For those that have the tremendous fortune to never have been through this process, please count yourselves the luckiest SOBs on the planet.  It's less about the procedure and more about the preparation for it.   I had to drink a gallon of what I can only describe as stagnant seawater that had been filtered through a jock strap and infused with celery.  I'm pretty sure it was straight out of the tank where they kept the Sea Monster in The Shape of Water.  Thankfully, I'd already been on TPN for 6 days and there wasn't a lot to cleanse out of my system. 

The Colonoscopy - about eleven years earlier than I had anticipated having one - wasn't as bad as I thought it would be.  There were, however, complications that have now made me impervious to public embarrassment.  My period had started a few days earlier, because of course it did, and I had to use the large medical sanitary pads the hospital had stocked.  So I had to keep my underwear on and then shimmy them down to my ankles right before the procedure in a room.  And, of course, the Colonoscopy team that day was all male.  

Otherwise, it wasn't unlike the outpatient procedures I had for my tonsils, gall bladder, or ACDF surgery.  They wheeled me back, told me they would put me under and to count backwards from 100.  Then the next thing I remember is being wheeled back out to the recovery room to fully wake up.   The nurses in the recovery room were very attentive and kind.  They offered me a ton of literature on IBD - specifically Crohn's Disease -  and a low-residue diet. So this was the first confirmation that I was going to be diagnosed with Crohn's and it felt like being blindsided even though the GI team had mentioned it as one of the items they wanted to test for. 

The doctors has taken a piece of tissue during the Colonoscopy to biopsy - because that was the only way to definitively diagnose Crohn's Disease.  I held onto that for the rest of my hospital stay - hoping and praying that the biopsy would show something else and we'd have to cross Crohn's off the list.  Unfortunately, I didn't get the official diagnosis until two weeks later when I went for my follow-up exam at the GI's office.  Even then, I insisted on a second opinion to be sure.

Weirdness

Things are weird - I feel manic and in denial and calm all at the same time.  May has been a weird month for me, for all of us I am sure.  But for me, I found myself hospitalized and isolated from family and friends for a full week.  Then I was part of a reduction in force at work, which has left me scrambling to update my resume and reach out to my professional network.

I've been making lists about what I need to do to hit the job search running.  All the while it feels like it's not real and I'm just on vacation.  Sadness creeps in when I think about how much I loved that job.  Then I feel like things are kind of okay because people are already reaching out with possible job opportunities in the same field.  And then I feel a bit of panic around paying bills and what the future will bring for medications.  

I keep having dreams that I'm late for work, so it doesn't feel real yet.  I've been trying to stay positive and find silver linings where I can.  Today's non-scale victory, as weight watchers calls it, was fitting into a size 12 again.  The Barbie dress I bought and wanted to wear to the work party in December finally zips up and isn't tainted with a bittersweet memory.  It's waiting for an event.

It makes me worried about my next flair up though - if the diagnosis is correct, I'll be dealing with this for a long time.  I'd been bitching about how I'd lost 25 pounds and not dropped a dress size and I think what must have happened was that my belly was so distended I didn't notice a difference.  Since I've been home, I've lost another 5 pounds and the change in my body is significant.  So I must have been accepting bloating and pain as normal when it clearly was not.  I did the same thing when my disc herniated in my neck - kept ignoring the red flags my body was sending out until it reached a critical state.  So how do I recognize the warning signs for the next time?

Hospitals in the Time of COVID-19

I've just spent the last week in isolation in a hospital.  I was, thankfully, not there due to COVID-19 but no outside visitors were allowed as a safety precaution.  I can count on one hand the number of times I've been hospitalized - once for overnight observation after my SCUBA accident and once over the weekend when my tonsils abscessed.  Each time, the stay was made easier by the cheerful faces of family and friends.

This time started much like the visit for my tonsils - I had pain that I sought medical attention to resolve and was blindsided with a much bigger problem than expected.  This time, I'd been experiencing pain in my abdomen that steadily got worse until I could no longer sleep or sit comfortably.  It felt so much like my gall bladder attacks ten years ago, I wondered if it was possible to develop stones without one.  My primary care doctor sent me for a CT scan with contrast where they discovered an abscess in my small intestine.  The radiologist was concerned it might be my appendix - and I was really hoping for the trifecta of tonsils, gall bladder, appendix - and called my doctor immediately.  They agreed it was a serious cause for concern and told me to get to the ER as quickly as possible.

When I arrived at the ER, the staff asked me the usual questions but also if I'd traveled outside of the country recently or had COVID symptoms.  The waiting room was divided up with a giant plastic sheet down the middle.  COVID patients sat on one side and everyone else on the other.  When it was determined that I would need to be admitted to the hospital, the nursing staff administered a COVID test to determine where I could be placed.  They had isolation rooms set up to handle COVID patients on each floor.

First the nurse had to suit up in protective gear - a full cover over her clothes, face shield, gloves, and mask - then she pulled out a long swab with what felt like porcupine bristles on the end.  This went up my nose further than I was really comfortable with and I had an involuntary reaction where I pushed the nurses hand away.  Which, of course, only meant she had to do it again.  This time when they scraped it across my brain I focused all my energy into remaining very still.  Within an hour, they had the test results (negative) and I was able to be moved to the seventh floor.

Being admitted to the hospital right now is both the best and worst thing to happen.  It's good because you know the doctors and nurses are going to do everything they can to resolve the problem you're having and IF something goes terribly wrong you're in the right place.  It's bad because there is the concern for contamination and no visitors are allowed except under the most dire of circumstances.  So I was there for the longest stay of my life without much of anything to look forward to.

The nurses had to tend to both COVID and Non-COVID patients, so it took a little longer sometimes for them to answer my call button if they were in an isolation room.  This was due largely to the fact that they would have to take off the PPE equipment before they could leave the isolation room and then done a fresh set before entering my room.  I never saw the face of anyone that took care of me - they were always wearing a mask and sometimes a protective shield.  For my part, I tried to only call when truly needed because I didn't want to add to their burden.

But for everything that the doctors and nurses had to deal with, they were always pleasant and always kind.  They explained things clearly and made sure I knew exactly what to expect at all times.  My nurses would also try to stay a little longer and chat with me to make sure I was doing okay.  They completely understood the healing value of human interaction and tried to compensate for the no visitor policy whenever possible.  Some of the staff told me they were isolated from their families, too.  Trying to make sure they didn't carry anything home with them at night.  So I hope that I was able to help them feel a little more connected too.

My stay in the hospital brought the COVID pandemic into perspective for me.  I was already social distancing and wearing my mask, but interacting with the people on the front lines made it real for me in a way that nothing else could.  Now that I'm home, I'm continuing to wear my mask and wash my hands.  I'm keeping six feet away when I do have to go out, not for me necessarily but for the men and women sacrificing their family time to take care of patients.  If I can keep someone else from getting sick and ending up in the hospital, I'll have done my part to make things a little bit easier in this time of COVID.