The Queen of Weird Diseases

The Queen of Weird Diseases

This week I have spent time at home recovering from a cryo ablation to my heart on Monday (for atrial fibrillation). Actually, it’s not been as bad as I thought it might be. As a Linda Ronstadt song says, “The waiting is the hardest part.”

Back in July I had a brilliant idea to schedule a bunch of doctor’s appointments, my 56,000 mile tuneup, as I called it. I had no idea what I was getting myself into. I scheduled a visit with my cardiologist (whom I had not visited in two years) and finally got around to calling a colorectal surgeon to take care of an embarrassing little problem I’ve had for a couple of years. My GI doctor had referred me to this surgeon on my last visit to him (nearly a couple of years ago). He said she could give me Botox injections to “fluff up” my butthole. Lovely. The thought of that daunted me and did not motivate me want to go see her.

However, I had an appointment and I went. She recommended that I see a physical therapist. I thought, “Okay, whatever” and went to Results Physiotherapy to see a pelvic floor specialist. Oh my gosh. Never knew that a doctor’s visit would be so intimate. I thought I was familiar with that after having been to an obstretician/gynecologist over the past 30 years, but no, this was even more intimate. I discovered I have a prolapsed bladder, and I had to do several exercises like Kegels, clamshells, and leg raises to work my gluteus medius. And all that was before I even got to work on the real problem, which, as I mentioned, is personal and embarrassing. At this point I am ready to deal with it through exercises so I don’t have to have yet another surgery.

Meanwhile, my visit to the cardiologist resulted in my wearing a heart monitor for a month, because the doctor had no documented cases of atrial fibrillation other than when I had a stress echo (treadmill) test about 9 years ago. I know I have something weird going on with my heart, because my pulse races and pounds in my temples (palpitations), and I get short of breath and lightheaded with mildly strenuous exercise (walking up an incline or doing some poses in yoga).

So I got going with my physical therapy, which turned out to be twice a week, and then I discovered it could take as long as 3 months. I got up in the morning thinking, “What day is it and what time do I have to be at the doctor and which one do I go to?” It wreaked havoc with my work schedule.

All this is in addition to two autoimmune disorders I have: primary biliary cirrhosis, so far kept at bay by medication (since 1989) and CREST syndrome, a disorder I discovered I had about a year ago. That little autoimmune disorder carries with it several interesting complications: calcinosis (calcium deposits, which I have discovered are quite painful and flare up from time to time in my elbows), Reynaud’s phenomenon, esophageal dysfunction, scleroderma (hardening of the skin, both outside and in my connective tissues), and telangio-something (red dots under my skin, which may travel to my face and make me extra attractive in my older years). The chronic diseases are something I deal with all the time, which means that I may be extra fatigued or have a flareup of a calcium deposit (which can land me in the hospital if not caught soon enough), and of course the acid reflux that goes along with my esophagus (I have actually had 2 ablations for Barrett’s esophagus).

While I was wearing the heart monitor, I had a documented episode of atrial fibrillation (heart racing up to 200 beats per minute), which finally convinced my cardiologist to refer me to an electrophysiologist for evaluation for a possible ablation. Hence I had the ablation, and I must say it’s the easiest surgery I’ve had to date. All that hurt after the surgery were my elbows from lying on the calcium deposits for so long. So I’ve been resting up this week.

All that is to say, it’s important to stay on top of all the symptoms of my weird diseases, though I may not be brave enough to schedule another tuneup where I do a blitz of several doctors at once. My rheumatologist told me that I am tough, which he likes. That was enough to get me through the next several months. Yes, I can be tough, but it helps for a medical professional to recognize that. His assessment gave me enough oomph to get through all the needles and the courage to face the unknown with my ablation. Hopefully this is the last of my medical drama for a good while!

Wake Me Up When September Ends

It’s only mid-August, but it seems like the summer has flown by. I feel a little wistful every year about this time. It’s as if another summer has passed me by, and I didn’t get to swim nearly as many times as I would’ve liked. Okay, I’ll quit whining. I did get to do quite a few things.

One highlight of our summer was a trip to see my cousins Joe and Catherine back at the end of June. The occasion was Joe’s birthday, but it was combined with a visit from Catherine’s siblings and their wives (she has 4 brothers), as well as my cousin Sue and my uncle Paul (who is 93 years young and still gets around quite well without a cane). The extended weekend was fun. We sat around and chatted a lot, celebrated Joe’s birthday on Saturday, finally got to meet little Stella, Joe’s 18-month-old granddaughter who is absolutely delightful, went to Busch Gardens and rode several rides (I, however, didn’t participate in the roller coaster rides with younger cousins Nick and Stephanie. There just comes a point in one’s adult life when you realize that maybe slinging around in a roller coaster and having your heart come to the top of your throat just before you go sailing down a steep incline and get jerked around side to side may not be the best thing for your body). Joe and I road the Log Flume, and I wish I had bought the picture of us at the top of the hill just before we went sailing down to come to a nice splashy end. I screamed for all I was worth! It was good to see family and friends who have become family that weekend. Mona and Craig made the trek from Louisiana via Michigan and were on their way back home with Mona’s parents…what a long trip! John and I had a fun weekend then.

We got back home barely in time to prepare for Julie, our 24-year-old daughter’s, arrival back home from 2 years in Madrid. It is interesting (on both sides) to get used to living with a young adult and trying not to revert to old patterns. So far I haven’t done as well as I’d hoped, because Julie reminds me that I nag her constantly. Oh well. Guess it’s in the mom jeans, I mean genes, but that doesn’t mean I have to voice every thought. And a funny thing I’ve noticed is my tendency (our tendency) to blame misplaced objects on Julie rather than ourselves. I told John we needed to stop jumping to conclusions…we may be the ones who are putting things in weird places, and in many cases “the enemy” was us! I will say I am quite proud of Julie for not sitting around on her duff and waiting for jobs to come to her. The first week she was home, jet lag notwithstanding, she applied for 20 jobs. She had a job before she had been home 2 weeks. It’s not one she wants to be working at very long, but she felt the need to make some money and get on the way to supporting herself, and I say Bravo! to that. She is trying to figure out the next chapter of her life, but meanwhile she is hostessing, waiting tables, doing whatever is needed at Coco’s Italian Restaurant, a popular restaurant in Nashville. She is working hard, and we’re somewhat like two ships passing in the night, because our schedules rarely jibe. But maybe that’s for the best, because it may mean less conflict.

And then there’s my dad. John and I moved him to an assisted living facility in Canton, NC back at the end of December after he’d lived with us for 13 months while undergoing treatment for chronic lymphocytic leukemia. Turns out he wasn’t exactly in assisted living but in an apartment that provided some services (like assistance with bathing and administering his medications, plus 3 meals a day, and housecleaning once a week) he needed. He experienced several falls (none of them major, thank God…just mostly slips from his bed and one fall as he was backing into the bathroom, holding onto his walker and he lost his balance and fell back toward the commode). John and I went to NC the first week of August (left on a Saturday; returned on Monday) and were checking on him. While John was trying to arrange a primary number for the service my dad has been paying for in which he wears a pendant around his neck that he can push if he falls, the head nurse came by his apartment and told us that a spot had opened up at the assisted living facility just across the street (there are several buildings in this facility), and she thought Daddy would get a better level of care there. While I was trying to absorb all this, I asked if we could go take a look at the room, and we put Daddy in his transport chair and took him over there. The huge downside is that he did not have a bathroom in his room but had to walk down the hall a short distance (and share a bathroom with all the residents on his hall). There are 4 bathrooms for about 26 residents, not an ideal situation. When you’re 92, you don’t need to try to remember to gather supplies to go to the bathroom like you did in college … plus, it’s just hard to go down the hall to a bathroom. I didn’t take in this information at the time (being under a little duress, with our having planned to leave by 2:00 p.m. so we could get home to Nashville at a reasonable time to prepare for going back to work the next day), but there was no sink in Daddy’s room.

So back John and I went to Canton/Waynesville the following weekend, and in the meantime Daddy had a rough week trying to adjust to his new home. He has expressed dissatisfaction, saying he feels like he’s in prison. I didn’t know exactly what to say. I usually try to put a positive spin on things, but there was not much positive to emphasize in this situation. About that time my stepsister and her daughter and son-in-law came over to visit Daddy, and I quickly went outside to call an assisted living place in Nashville that we’d looked at and nearly signed papers to admit Daddy back in December, when we got the e-mail from the assisted living place (we thought it was assisted living, but according to NC law, it’s a multihousing unit, and it’s private pay only…and they do have a dining room and one CNA on staff, and the nurse comes by every day to check on the residents, but they are pretty much on their own) where Daddy had decided he wanted to go, and they had a vacancy. I talked with him about it, and I wanted to let him be part of the decision. Of course, he chose to return to NC because he was quite homesick for Canton, and he had felt pretty isolated here in Nashville. His main activity was going to the doctor’s office, getting treatment, and occasionally getting out to the drugstore or to Kroger or Costco, and often that was with John. He went to church with us a few times, but staying for both Sunday school and the worship service was too taxing/stressful for him.

So I let Daddy make that decision, and it has not worked out great for either him or us. Not to mention placing a burden on my stepsister and stepbrother, who have to take him to doctor appointments and get constant calls about supplies he needs from Wal-mart.

After he moved on August 5 to the “new” (really old, more than 100 years old) assisted living facility with the bathrooms down the hall from his room, John and I decided that we just needed to suck it up, admit we’d made a bad decision, and find a place for Daddy in Nashville. Sometimes you just have to say, “I am sorry, I was wrong.” That certainly applies in this situation. I also say, “I made the best decision I could with the information I had available at the time.” So be it.

We got back home late Monday night (around 10:15 p.m. Eastern, 9:15 Central time), and we both prepared to go to work on Tuesday. We had an appointment with an assisted living place here at 9:00 a.m. Tuesday. I was a little bothered (well, a lot bothered) by the distance Daddy would have to walk to get from his apartment there to the dining room. There’s a shortcut across the courtyard, but that wouldn’t work very well in bad weather, and the walk around the facility to the dining room was even longer than the distance he’d had to walk from his apartment to the dining room at his first “assisted living” residence, and that was challenging enough for him.

So back to the drawing board. John called another facility that I’d already taken a look at in December, and he made an appointment for after work a couple of days later. We toured it, and even though it is a “high-rise” residence (8 floors), there is an apartment available very close to the elevator, and Daddy will have a short distance to walk to get to the dining room. He will also get the assistance he needs to find his way around, and the RN/sales manager said that they would train him in fall prevention and there were physical therapists available who can work with him to do some strengthening exercises. Daddy is really good about doing PT exercises; he’s been practicing almost daily since he had home health care with PT just before moving to Nashville.

So the next thing is getting him moved here, and we are preparing for that. Oh, I forgot to mention one other minor thing. I am having heart surgery sometime around the first of September. It’s for atrial fibrillation and sounds like it’s not too major (an ablation), except for any time you have general anesthesia and are cut on, it’s “major surgery,” in my opinion. So there goes the rest of the summer…and I am praying for strength and sanity to get through all these changes…and the patience to explain it all to Daddy and perhaps take over his finances and then just do what I need to do for him to help him get settled. I am so thankful that John is by my side to look out for me and his father-in-law, and I’m glad Julie and Daniel are around to visit their granddad as their work schedules permit. Together we’ll get through it all, moving Daddy and having my surgery, and just adjusting to a new season of life.

So yeah, I’m a little sad about summer’s end and the usual crazy schedule of fall as we return to a busier schedule. This fall will be different. I will have to be mindful of my physical limitations. Somehow it will all turn out for the best. I know a certain person to whom I pray and place my trust in…that Person watches over me and my dad and cares about what happens to both of us. Oh, and by the way, God cares for all people, so we wouldn’t be anything special, except for the fact that the Bible tells us (and I get the strong sense from attending my church) that even the hairs on our heads are numbered, and we do not need to worry…that God’s got us covered.

In Gratitude for Body Parts That Work Like They’re Supposed to

Today I am especially grateful that my left elbow, which got infected on December 14, is regaining mobility and function. It’s amazing what we take for granted when all is going well. Then when we injure some part of our body, or something goes wrong, we are reminded how much we rely on that previously ignored body part.

I have an autoimmune disorder that was diagnosed in 1989. Since then I’ve had many opportunities to appreciate a properly functioning body, as little surprises crop up when I least expect them. The latest episode took place when some calcium deposits in my elbow became inflamed, then infected. I went to the doctor two days later, and she put me on a strong antibiotic and asked me to return two days later so she could assess my progress. She mentioned that I might have to be hospitalized for IV infusion of antibiotics.

That evening I started running a fever, and it went up to 102.1 (pretty high for me, since my body temperature normally is about 97.6). John called the doctor that night, and she asked me to come in first thing the next morning. Fortunately, the antibiotic started working so I didn’t have to be hospitalized. But my arm was swollen from the wrist almost to my shoulder, and I couldn’t bend my elbow enough to be able to put on earrings or roll my hair. John helped me out with those tasks for a couple of days, as well as assisting me with showers. Wouldn’t you know the infection/inflammation was in full force on the day of our church choir’s annual Feast of Lights (our big Christmas music worship service). I managed to hold my folder with my right hand and turn pages with my left.

So I’ve been thinking about the lessons I learned during this time I was physically impaired. Probably the biggest challenge was patience, as it took me nearly twice as long to get dressed each day, plus my elbow just plain hurt.

I thought about people who suffer each day from chronic pain, and I felt empathy for them. It’s hard to be pleasant to others when you’re in pain. I hope I will remember this when I encounter someone who snaps at me. You never know what someone may be going through; all we see are snapshots of people’s lives.

I felt grateful for John’s willingness to pick up some extra work, like loading the dishwasher and cooking and assisting with all sorts of tasks. He did it gladly, and he made me feel loved. My dad, who is living with us right now while going through treatment for leukemia, also was eager to help. He folded laundry and was a comforting presence.

I kept thinking of the passage from 1 Corinthians 12 where the apostle Paul writes about how the parts of the body are like individuals (and each person’s unique gifts) in the church:

12 Christ is just like the human body—a body is a unit and has many parts; and all the parts of the body are one body, even though there are many. 13 We were all baptized by one Spirit into one body, whether Jew or Greek, or slave or free, and we all were given one Spirit to drink. 14 Certainly the body isn’t one part but many. 15 If the foot says, “I’m not part of the body because I’m not a hand,” does that mean it’s not part of the body? 16 If the ear says, “I’m not part of the body because I’m not an eye,” does that mean it’s not part of the body? 17 If the whole body were an eye, what would happen to the hearing? And if the whole body were an ear, what would happen to the sense of smell? 18 But as it is, God has placed each one of the parts in the body just like he wanted. 19 If all were one and the same body part, what would happen to the body? 20 But as it is, there are many parts but one body. 21 So the eye can’t say to the hand, “I don’t need you,” or in turn, the head can’t say to the feet, “I don’t need you.” 22 Instead, the parts of the body that people think are the weakest are the most necessary. 23 The parts of the body that we think are less honorable are the ones we honor the most. The private parts of our body that aren’t presentable are the ones that are given the most dignity. 24 The parts of our body that are presentable don’t need this. But God has put the body together, giving greater honor to the part with less honor 25 so that there won’t be division in the body and so the parts might have mutual concern for each other.”

I think this is one of my favorite scripture passages. It reminds me of the wonderful diversity of people and how God designed us all to be different with unique gifts. My hope is that someday Christians will unite in demonstrating “mutual concern” and love for each person regardless of their differences, whether in religious views, gender, political persuasions, sexual orientation, ethnicity, or whatever.

I Haven’t Dropped Off the Face of the Earth

I’ve just been a little absorbed since June with traveling for work (once a month from June through October), vacation and a family wedding in September, changes in my job (good ones) and learning to deal with new technological challenges, and last but not least, my dad and his physical decline.

This month I have driven to North Carolina two weekends in a row to arrange home health care, look for assisted living, go to doctor appointment, and cook for him. Prayers have been answered in the facts that my dad has accepted that it is no longer safe for him to live by himself, and he’s planning to move to Nashville for at least a while as he undergoes treatment.

Now that we have a diagnosis (he has a form of leukemia common in elderly people), the next step is to consult with an oncologist in Nashville. In all of this experience I am grateful for:

  • my sweet husband, who has shopped for groceries, cooked, made many phone calls to arrange doctor visits for my dad here, and just generally been a rock for me
  • friends and coworkers who are praying for me
  • good books to read (and divert my attention)
  • funny comments on Facebook and Twitter
  • yoga and my walking buddies
  • the gift of prayer and the assurance that God will be my strength
  • my crazy kitty, Lily, who warms my lap each night
  • crisp fall weather (even when it’s damp and cold)
  • the beauty of nature
  • art and music to enjoy
  • writing, poetry, and the right words spoken when I need them

I am a little weary but holding up okay. One day at a time. One foot in front of the other.

Savor Today

Today has been a great day…I’m in a cleaning mood, the weather is great outside, and believe it or not, all is right with my world.

“So what?” you may think. Well, I’ve learned over the years to be grateful for the days when I have sufficient energy to do housework. You see, I have an autoimmune disorder, and I never know quite when something will wreak havoc with my body and I can’t function for a day.

One way I deal with this is by thinking, “Things could always be worse.” I know many who are struggling with cancer and other horrible diseases.

I faced my own mortality at the relatively young age of 30. It was a fluke. My liver enzymes were high in some blood I donated to the Red Cross. I got a letter from the RC informing me of that fact and urging me to see my doctor. I followed their suggestion.

My doctor scheduled me for a liver biopsy, which in 1989 was not the most fun outpatient procedure. John took me to the hospital and stayed with me. I got a shot of local anesthetic, and then a nurse came in with a big horse needle (I nearly came out of the bed when I saw it, because I really don’t like needles) and punched it in the space between my ribs.

It felt like what I imagine a horse kicking you in the ribs might feel like (minus the broken ribs). Crap!

After a couple of hours, my doctor came into my room with another doctor and I thought, “Uh-oh. This can’t be good.” My doctor informed me that I had primary biliary cirrhosis. When I heard the word “cirrhosis,” I thought back to my college days and figured that my drinking had come back to bite me. I really didn’t drink THAT much…although sometimes I overdid it.

John and I were at a loss about what to ask the doctor. I said, “So…what is that?” and the other doc, a gastroenterologist explained that it is a liver disease in which the bile ducts eventually become filled with scar tissue. I blinked back tears and looked at my doctor.

Next question: “What is the life expectancy?” My doctor said, “Well, it’s usually found in middle-aged women” [“Middle-aged?” I thought. “But I’m only 30!”] …” You will probably have a normal life expectancy.”

I was still reeling from the news and trying to figure out what this meant for my life. Our son, Daniel, was 18 months old at the time, and we wanted to have another child. I asked the doctor, “Will I be able to have any more children?” He said, “I’ll need to consult with someone about that…and he contacted (later) a liver specialist at Johns Hopkins.

In the meantime, our pastor at the time (Joel Snider) came by to visit. John and I told him about my diagnosis. I remember his saying something like, “This is one of those bumps on the road of life.” At first I thought, “Yeah, buddy, that’s easy for you to say.” Later those words comforted me.

You see, Joel introduced me to a young woman in our congregation who was on the waiting list for a heart & lung transplant. We met at a church picnic. She and I talked about our respective diseases, and after I talked to her, I felt much better. I was shocked to hear, a few weeks later, that she had died waiting for her transplant.

Nothing I have read on the Internet about this disease has been encouraging. Everything sounds dire. I was a member of a Facebook group for people with PBC for a while, and the posts were so depressing, and the people sounded so much worse off than I.

After panicking for a few weeks and thinking, “I’m gonna die!” and worrying about the future of our family, I finally calmed down. Maybe it was the news report of a young pregnant woman being hit by a bus on Church Street (and killed) that got through to me. Or maybe it was the realization, after talking to my doctor in a subsequent visit, that I could take life one day at a time and there were some medications available to help my condition…and best of all, I could have another baby. (I asked him a lot about that. I didn’t want to bring another child into the world if I wasn’t going to be around to help raise “it.”)

I also need to give credit where credit is largely due: God calmed my fears. I gained much hope and comfort from reading the Psalms. When I prayed, I felt like God listened and even had the sense, “It’s all going to be okay.”

Regardless of how things turned out, at that moment I decided I was going to look at life differently. I have read accounts of many people with life-threatening diseases who say they are actually grateful for their disease, that it changed their lives completely.

I know that my autoimmune disorder has taught me to slow down and smell the roses, so to speak. It made me appreciate…so much…my children’s laughter and activity and yes, even the challenges we went through when they were teens. It’s made me feel incredibly lucky to be married to a sensitive man who loves me for who I am and who has stood by me all these years (nearly 30).

So if you wonder why I believe in God, why I think faith is important, why I try to live each day as if it’s my last, now you know the “rest of the story.”

Now to get the bathrooms cleaned and the floors vacuumed….I need to take advantage of the energy I have today! Life is good.