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!

Advertisements

3 thoughts on “The Queen of Weird Diseases

  1. Hi Anne,
    I was diagnosed with Primary Biliary Cirrhosis a week before my 21st birthday. I have a biopsy soon to discover the staging. Your blog inspires me through your steadfastness and ability to fight through all the autoimmune attacks your body is setting up!
    I’m trying to raise awareness of our diseases as well as autoimmune diseases in general. I have created a blog that raises that awareness through humor. I try to write funny posts about our daily lives with autoimmune diseases so we can heal through relatability and humor. I’d love it if you would check it out and maybe offer some advice as to how you are handling your disease?
    Thank you so much – this is all so new and honestly a bit scary

    • Hi, Katie…yes, it’s scary to receive a diagnosis of an autoimmune disorder. I will look at your blog. As to how I’m handling my disease, I take the medications prescribed by my doctor (and every now and then ask if that is the most current treatment). I also try to get as much rest as I can when I’m not working. I have learned to listen to my body and not try to push on through when I am not feeling well. Yoga has been helpful in dealing with stress, and I’m sure it’s helped my body in other ways.

      I think it’s important to be able to talk to people who are dealing with the disease…but I got a little depressed when I joined an online Facebook group for people with PBC. I’d be happy to keep in touch with you as you deal with this disease. My e-mail address is anneltrudel@gmail.com. I’ll have to warn you that I am not real good about checking it frequently, as I can barely keep up with my work e-mail. Best to you.
      Anne

    • Hey, Katie (?)…just checking to see how you are doing with the PBC. I have done okay with that, I think. The CREST syndrome has been more challenging to deal with. I never know what to expect. I need to check out your blog again. I hope you are doing well.
      Anne

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s