Tag Archives: lupus

It’s about travel, saying “I love you,” and death

16 Thursday Aug 2012

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England Rendezvous, Chapter 3

My phone displayed that I had a voicemail. Normally I don’t bother with my phone while I’m traveling abroad, and I figure that I’ll listen to voicemail when I get back to the U.S. Besides, anyone important who needed to reach me while I was on holiday in Bath, England knew to just text me.

Castle Comb in the Cotswolds

It was day three of my epic romantic rendezvous in Bath, England with my long-distance suitor I met in Scotland just eight weeks prior. No distractions. No phones. Just the two us to discover Bath, the Cotswolds, and to see if I could muster the courage to say, “I love you.”

But the phone. There was a message on it and I had this feeling I needed to listen to this voicemail.

“Hi Lisa,” the voice said. “This is Jana, Jessica’s sister. I’m sorry to have to tell you, but Jessica passed away and I know you two were close and I found your phone number in her address book. I wanted to let you know when the funeral will be, so call me at….”

I just stood there looking at the stupid phone in my hand. Tears welled up in my eyes so fast that it felt like they were coming like a big wave that crashes on the shore. I inhaled and then crash! I couldn’t stop them.

Jessica and I worked together in Menlo Park, California back in the 90s. When I moved away we phoned each other weekly and wrote long epistles back and forth to each other over email where we lamented about men, our jobs, men, our coworkers, men. You get the picture. We would even watch the Oscars together over the phone and make snarky comments throughout the show. (This is what we did before Twitter, my friends.) We went to Giants games when I would come to town and traded books through the mail.

She also had lupus and had contracted an infection from a pedicure she received from a salon in her neighborhood. The infection was so bad she was hospitalized the last several months of her life and I frequently called her at El Camino Hospital in Mountain View, knowing I could be easily directed to her room where I would update her on what happened in Scotland and this fantastic guy I had just met.

But she died.

Steve walked in the room and I looked up at him and he had that look on his face—the “Oh crap, she’s crying. What do I do?” look. I blurted out the words, “My friend.” Tears not just rolling but pouring down my face. “She’s dead,” I continued. “Her sister. She left me a message.” I couldn’t breath and pressed my face into his chest and sobbed. I sobbed big heavy, almost-hyperventalating tears.

The “I love yous” and the never-ending tears

I’m in Bath. Just the night before I said, “I love you” and he said it back (thank goodness). Big moment. Colossal moment. This is the desired outcome Jane Austen writes about, but I was grieving. I pulled myself together and we went downstairs to breakfast where our Bed and Breakfast host served us breakfast while I gave up trying to control the tears that seemed to never ever stop. I was sure that the other guests and the host thought we had been fighting.

A church in Castle Comb in the Cotswolds

Move on with our day’s plans. That was the only thing that we could really do. This was the day we were going to discover the Cotswold region. Every guidebook seemed to write lovingly of the romantic quaint region with its stone homes, thatched roofs and cream teas. I studied the region ahead of time. I was prepared to get wrapped up in it, but I was sad. So very sad.

The verdant landscape of the Cotswolds was like looking at a poem. There is a cadence to the hills and each little village was like hitting upon the rhyme at the end of a line. They all looked similar, but they had their own character, like words that sound the same but aren’t. It wasn’t a sad poem and it wasn’t a happy poem, but it was a comforting one.

Bourton on the Water

We held hands as we walked along the pathway at Bourton on the Water, and we would have moments of silence and then I would start talking about Jessica. Then I would tear up again and return back to silence. I didn’t quite know how to feel. My heart hung heavy with grief, but was also bursting out of my chest with spectacular joy and the feeling of being in love. I couldn’t have been in a more bifurcated moment in my entire life. Or is it possible to have two hearts in this kind of experience?

This picture with smiles and a sad heart

I wanted a photo of us in this lovely place. I asked a man if he could take our photo and Steve and I sat on a bench. “No, no,” the man said as he pointed to another bench. “Sit over here. It’s much better.” We moved to the other bench and the man, who turned out to be a photographer, took this photo with my little Kodak point-and-shoot camera. This beautifully, perfectly angled photo.

I feel like I’m spoiling the ending here but you know already that I married that man. Fast forward almost two years later and as a wedding gift, the women at my church had an artist paint a portrait based on this photo. When they revealed it to me I wept again. This photo took me back to that time when I was swept up in love in England, where “I Love Yous” were exchanged, and if you look really closely you’ll notice that in my heart I’m grieving the loss of my friend, Jessica.

Continue to next chapter.

 

Between Thanksgivings

20 Sunday Nov 2011

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The following are “journal entries” I either documented on Facebook or jotted down in a notebook this past year. It chronicles the year as I worked my way through coping with my broken leg/ankle.

November 25, 2010 – Thanksgiving Day,

A pretty fantastic Thanksgiving meal at local restaurant, Tuscany. Love that it’s just down the street from us and after a short nap, we hit the road for the four-hour drive to Zion National Park in Southern Utah!

November 26, 2010 – Oh Crap.

The day started out beautifully. We hiked Emerald Pools and though it was very chilly, I felt energized and so excited to be enjoying the beauty. But on the way down I slid on some ice and hurt my ankle. (Well, “hurt” sounds too minor. The foot was actually pointing the wrong direction.) Let me be clear: IT HURT LIKE HELL! Steve and two lady hikers who came upon us dragged me about 800 meters while we waited for the Park Ranger to arrive. We were worried about hypothermia setting in, hence the need to get me out of the shade and into the sun. I was worried about my hands and feet. I have Reynaud’s Syndrome, which in most instances is just inconvenient, as it makes my hands and feet turn white, then purple, and then red and swollen when exposed to cold. But in this case, I was worried that I’d get frost bite much quicker than the average person.

Search and Rescue eventually reached me and carried me out. Still, at this point, I’m thinking it’s just a sprained ankle. I was loaded into the ambulance and taken an hour away to St. George.

So I broke my tibia and fibula. Seems as though I have to have surgery so I opted to have it done back in Salt Lake City. After loads of drugs, the staff tried to put Humpty Dumpty back together again and wrapped up my leg and we went back to the hotel in Zion.

November 29, 2010 – Phone calls

First call: Call work to let them know it’s going to be awhile before I make it into work, which has me really worried. I just started this job FOUR WEEKS AGO! (I actually texted to my boss the picture of me being carried off by Search and Rescue. There’s nothing better than great proof on why you’re not going to be in the office.)

Second call: Find a surgeon. So how do you shop around for a surgeon? Well, you start making phone calls. I finally decided to call my Physical Therapist who actually worked with me the previous summer on that very same ankle. (For acute achilles tendonitis.) First of all, she was not happy to hear that I messed up a perfectly good ankle but did give me the name of a good surgeon.

Third call: MOM!!!! Steve’s great and all, but I needed my mother around. She knows how to deal with these things.

November 30, 2010 – New Hardware

Today is surgery day. Feeling okay about it until I saw this Reader’s Digest sitting in the waiting room before I went in.

Everything seemed to have come out okay. A plate, five screws and 2 pins later I looked like this:

December 1 – 10, 2010 – The Lost Days

Don’t remember much about the 10 days following surgery. Except there was a lot of television (I watched so much HGTV that I’m certain I can build a house, decorate it and landscape it with no problem), a lot of vomiting (and mom was always there with the bucket), and a lot of pain. Actually, it wasn’t pain, it was just extreme discomfort. I learned a big lesson–the difference between being in pain and being uncomfortable. And that’s how I got off my pain meds so quickly.

December 24, 2010 – On Our Own

Mom left to go back to Oregon today. I was very, very sad to see her go. I hope that one day I can be like her and drop everything to go help someone for 25 days. Okay, let’s see how Steve does this on his own.

January 4, 2011 – Back to Work

I needed a wheelchair to go back to work. I had crutches, of course, but it’s a little problematic when your hands are swollen all the time like mine are (the Reynaud’s and this crazy autoimmune thing I’ve got going on), but mostly, it’s tough carrying around a laptop and notebook to meetings when you’re on crutches. I’m tired a lot. I’m also feeling quite lost–remember, I just started this job and was in it for only four weeks before I was out on medical for five weeks. I hate talking to my direct reports in a wheelchair or while sitting down. I have to look up at them. I feel like I’m not very commanding or even important. I’ve also discovered what’s ADA compliant in the office and what isn’t. I’m so dehydrated because I try not to drink water so I don’t have to use the bathroom at work. It’s such an ordeal–I have to take the elevator to another floor to use an ADA compliant bathroom.

January 10, 2011 – Project Runway

This injury changes just about everything. It’s hard to look cute when you’ve got the Storm Trooper boot on. But thank goodness for footless tights. (Regular tights pulled too much on the injured foot.) A whole world of possibilities have opened for me now.

And I’ve become the queen of online purchasing. It’s just too much of an ordeal to go out shopping in either the wheelchair or on crutches. Navigating around in the wintertime just feeds my fear of slipping.

February 4, 2011 – Physical Therapy

I love my physical therapist, but this time around I’m beginning to hate her. Big crocodile tears rolled down my face today as she pushed on my ankle to try to get back my dorsal flection. This can’t be happening, I thought. What if I can’t walk again? Those are real thoughts. But the more profound thought for me has been around, “What if I get fatter?” This injury couldn’t have come at a worse time. I have a chronic illness already (at the time we thought it was lupus), I have an extraordinarily busy job, I travel, and I already needed to lose a few pounds. Now this?! Ugh. So endure the pain, I must. I’m now doing physical therapy three times a week.

February 15, 2011 – Shoes!

Today I can wear shoes!

February 20, 2011 – Navigating Airports

I’ve had two business trips for work since the accident. Steve’s been my sherpa for both trips. Thank goodness he has the flexibility to do that. The whole airport thing is an ordeal, though. It does allow me to bump to the front of the line, but getting through security is a more manual process. Poor Steve’s back–he’s had to manage the luggage and me in the wheel chair. While in Orlando, we had some time and went to Cocoa Beach and I practiced walking on the sand with the help of my crutches.

March 12, 2011 – Hiring a Trainer

I’m not done with physical therapy yet, but I went back to the gym and hired a trainer anyway. Steve also is training along with me, so it’s turned out to be quite fun. It’s been 3 and 1/2 months since I’ve broken out in a sweat that wasn’t induced by some sort of medication or menopause, so it felt great to feel a little raise in endorphins. It’s still a little awkward–I can’t do everything I used to do, but I’m determined. Besides, my clothes don’t seem to be fitting anymore and it’s getting quite depressing. I have to do something about this weight gain. All this sitting around for 3 plus months just sucks.

June 3, 2011 – Graduation Day

Today I graduated from Physical Therapy. You get a t-shirt when you graduate.It’s kind of weird, because for the past 4 and 1/2 months the folks at Mountain Land Physical Therapy have been a big part of my life.

I still have a great deal of work to do–my dorsal flection still is not where it should be and I still limp. Moreso, my confidence isn’t where it should be.

June 16, 2011 – What goes around comes around

Steve had surgery oh his nose today. It’s his turn to get all the attention and I’m happy to help him out. I don’t think I could ever do enough to repay him back for all the help he’s been to me.

August 9, 2011 – Getting older just doesn’t help

I turned 45 today. I still limp from my injury, though. My legs (both of them) are still stiff. I think the 3 and 1/2 months of not walking took its toll on my body. I know I don’t have lupus…I can sense it. Thank goodness I have an appointment with a new rheumatologist and hopefully I can get some answers. I seem to be working long hours at the office, which isn’t helping anything with my body right now. Will have to seek a balance somehow.

September 5, 2011 – Zumba

I may still limp. I may have those days where I feel like I’m moving in cement (thank you, autoimmune disease, which I now know is scleroderma), but there’s something about Zumba that helps with both my confidence and my ability to still feel like I can move. I do not lie when I say that there are sometimes I’m nearly moved to tears during a Zumba class. It’s almost the same feeling I’ve gotten when doing yoga. I think it must tap into something inside of me that brings my emotions to the surface.

The best part is this: I often limp as I walk into Zumba and when I’m done I can walk pretty normally.

November 20, 2011 – Cycling through it all

This brings me to here–just days before Thanksgiving. I think this week I’ve turned a corner. Sure, I’ve gained 15 pounds this year WHICH I BLAME SOLELY ON THIS INJURY! But I’m at the point now where I can just let it all go and try to get back on track. It’s been a year of making my place at a new job, getting my confidence back with simple things like walking, and learning to receive help from others. I also feel that this year I was able to move forward in getting answers for my chronic condition–learning that it’s not one disease but another one.

My father died suddenly and unexpectedly on January 3rd in 1996. It was a tough year that followed, but I remember distinctively that I felt as though a burden was lifted as I rang the New Year in with my mom on 1997. I felt as though I was done cycling through that year and it was time to move on. Big things happened to me as I moved forward. I went to graduate school, moved up the career ladder, traveled and eventually found my husband.

I think I’m done cycling through with this injury now. I still have a ways to go with getting my foot back to normal, but I want to let go of the fear.

Oh, and I want to let go of all those medical bills too.

Have a wonderful Thanksgiving!

“Start taking 1 baby aspirin each day,” the doctor told me.

28 Sunday Aug 2011

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When I was in high school for some reason I didn’t want to live past 40. I know. That sounds awfully morbid, but it’s true.  I don’t know if I had overheard my mother talking to someone about her aches and pains or if I overheard one of her friends doing the complaining, but I figured that life after 40 must all be downhill from there and I didn’t want to have anything to do with it.

Strangely, my life actually started to get interesting at 40.  It was that year when I met my husband and after all those years of being single and pretty much thinking the marriage ship had passed me by (and I had come to terms with that), I found a wonderful man and we had a fun-filled, adventurous  courtship for two years, after which we finally decided to get married.

But along came the aches and pains.  And some of them were just plain mysterious.

While I was having the time of my life, traveling the world, rendezvousing with my then boyfriend (and later husband) during our long-distance courtship, I began to experience  the slow metabolism.

The inflammation in my body.

The swelled hands.

The aches and pains.

Test after test and consultation after consultation with physicians, I was finally diagnosed with Lupus.

Crap.  Not the disease I wanted to hear about.  Just one year prior to my diagnosis, my best friend, Jessica Mears, died from complications of Lupus.

So, for about four years, I’d been treated for Lupus, only to find out recently from a second opinion that I don’t have Lupus.  (Really?  Are you kidding me?)

I’ve since fired the original rheumatologist who diagnosed me with Lupus and have begun seeing a new rheumatologist who seems very determined to find out the answers.  We don’t have the answers yet, but he did tell me to start taking 1 baby aspirin each day.

Baby aspirin. Isn’t that what old people take?

Now I really feel old and can’t help but think about that time in high school when I was certain things were just going to get really, really bad after age 40. (sigh)