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I Want My Mind and Body to Be Healthy at the Same Time

Part I of 3: In early 2019, my physical health appears to be crashing once more.

Hi Everyone. Happy holidays. I started writing this on Easter Sunday but wound up finishing it early on Monday morning. I hope many of you enjoyed the holiday with family and friends. I’m Jewish so I celebrate Passover. Friday night was the first night of Passover, as Jewish holidays typically begin at sundown.

Since my last post at the end of February, my health has continued to decline and I’ve been totally exhausted. I told my brother I can’t even have dinner with him and my sister-in-law for Passover because I probably wouldn’t even be able to stay awake through dinner, much less drive home safely. My terrific brother offered to come down and take me out near my house and I still declined. There are nights when I finish work at 5:00 PM and I’m so tired that I head straight for bed, no dinner, no nothing. I know I’ll wake up in about three-ish hours to take my meds, and with the insomnia I’ve been dealing with, I may or may not be able to get back to sleep.

There’s been so much happening and with the way in which I’ve reacted, I decided to make this post Part I of 3. I will try to keep the posts shorter and I promise to try not to let so much time lapse between the posts.

I caught a cold in early February, which exacerbated my asthma. The cold wasn’t particularly severe, but it was enough. I got over the cold, but the asthma has been like a bad relationship, from which I can’t extricate myself.

I’m going to write this in a timeline form for 2019, adding a couple of notes for clarification.

  • Thursday, February 14

An unscheduled visit to my PCP for asthma. She wanted me to go to the ER but I really didn’t want to go. She gave me a shot of steroids in my butt and she prescribed a 5-day 20 mg steroid burst. (The meds didn’t help.)

© dreamstime|woman doctor in white coat
Source: © dreamstime|woman doctor in white coat
  • Thursday, February 28

Another unscheduled visit to my PCP for asthma. Another shot of steroids in my butt and a prescription for methylprednisolone. (The meds didn’t help.)

Just the night before, I’d received word that my uncle in FLA passed away. I was close to my aunt and uncle, especially my aunt who is my mother’s sister and I wanted to be there for her and my cousins. When I told my PCP I was getting on a plane, she told me I shouldn’t fly with asthma this severe.

I ordered this technological marvel of a nebulizer online that I could take with me onto the plane. It cost me a fortune, plus the extra cost for overnight shipping. I used it often while I was in FLA, so I was glad that I had it.

© gerriluce|nebulizer
Source: © gerriluce|nebulizer
  • Wednesday, March 6

I went for an initial consultation with a new pulmonologist. She suggested I go to the ER, but I had to work in the afternoon so I didn’t want to go. She prescribed a 12-day taper of prednisone; 3 days at 40 mg, 3 days at 30 mg, 3 days at 20 mg and 3 days at 10 mg. She wanted to see me again on Monday, 3/11.

  • Thursday, 3/7

I didn’t make it until Monday. I gave in and went to the ER in the morning. I was exhausted from how hard it was to breathe all the time. I could barely take a shower or walk from my bedroom to my kitchen — and my apartment is not that big. I couldn’t believe I actually wanted to be admitted and started on IV steroids so this flare could be broken. The NP who saw me initially even said she was going to admit me. I must have been desperate. I was only admitted once before, in 2015, and with all the steroids, I blew up. It took me a year to lose the weight I gained without starving myself.

I ended up having 4 nebulizer treatments, IV solumedrol, an x-ray, a CT scan with contrast to rule out a pulmonary embolism and oxygen. I think that was it. In the end, I wasn’t admitted. Maybe I should have been.

  • Monday, 3/11

A follow-up with the new pulmonologist. I’m still wheezing, according to her. She adjusts the meds and suggests I make an appointment with an immunologist to discuss the possibility of going on biologics. I go home and google what an immunologist does, but all I find is that an immunologist deals with the immune system. Big help. The first appointment I could get was April 9th.

I had another follow-up with the pulmonologist one week later on 3/18, then another week on 3/25. Then she felt comfortable enough to start to stretch them out a little more. Two weeks on 4/10. And now the next one is a month after that on 5/13.

Meanwhile, I’m still can’t walk very far without using my rescue inhaler, still can’t exert myself at home without having to use my nebulizer or some combination. My chest gets tight. It’s not nearly as bad as it used to be, but I’m not even close to where I want to be — which is being able to take care of a dog, including walking her.

I didn’t get to go pick up the adorable dog whose photo was in my last post. The first weekend I was supposed to pick him up, the woman who was fostering him initially told me to meet her at her home at 3:30 PM on a Sunday afternoon. She lives between an hour and an hour-and-a-half away from me without traffic. Then she kept pushing the time back until 5:30 PM. I wanted to spend some time playing with the dog to see if he and I got along. I told her that was too late. We arranged for the following weekend, but that turned out to be the weekend I unexpectedly had to go to FLA for my uncle’s funeral. The following weekend, I had to tell her that I was in the middle of a severe asthma flare that for some reason was not responding to steroids, where it has always responded before and the time was just not right for me to rescue a dog. She accused me of “stringing her along.” That really hurt. I wanted to throw it back it the foster mom’s face that if she hadn’t kept pushing back the time the first weekend, I would have picked up the pup the first weekend already. I found myself mourning this loss because I’d been so excited about rescuing him. I have to keep reminding myself if I had him, I'd have a hard time taking good care of him.

© gerriluce
Source: © gerriluce
  • Friday, 3/22

I was diagnosed with coronary artery vasospasms in 2015. These are when there is a sudden constriction of coronary arteries. In the coronary arteries, which supply the heart muscle with oxygen-rich blood, a sudden constriction of one or more vessels can reduce blood flow to part of the heart.

The spasms are extremely painful, but only last between 10-15 minutes. I usually just ride them out. Sometimes people take nitroglycerin, but this medication triggers a bad migraine for me.

On this Friday morning, I got a coronary artery spasm that didn’t go away. It was about 3 or 4 AM, which is typically when we get these spasms. I really didn’t want to go to the ER as I was supposed to work at 9 AM, but I thought it would be prudent. So I went. The ER doctor asked me when I’d last had some cardiac-related test such as stress test (a couple of years ago, I think), echo (after the stroke), cardiac catheterization (OMG, never). The doctor wanted to admit me, but I told him I didn’t want to stay and I would follow-up with my own cardiologist. He told me I looked “trustworthy,” and he assumed I would do so. He came back to see me before I was discharged and said he spoke to my doctor and she said to follow up as scheduled which happens to be this afternoon, Monday, April 22nd.

© dreamstime|heartbeat
Source: © dreamstime|heartbeat

I’ve written several posts about my struggle with health anxiety. I felt I’d finally gotten this propensity to head to the ER at the slightest provocation under control. Now here I was in the ER twice in two weeks. I started questioning myself once more. I felt as though I was standing on my head, my legs flailing in the air.

And to consciously use the cliché — just when you think it couldn’t get any worse:

  • Tuesday, 4/2

I’d fallen asleep early and around ten in the evening I woke up to pee. When I got up from the toilet, I passed out and hit my head on the tile floor. I don’t know how long I was out, I don’t think that long. I’m on two blood thinners since the stroke and again, I thought it prudent to get to the ER because there was always the possibility of bleeding in the brain.

Memories of Liam Neeson’s wife, Natasha Richardson flashed through my head; she was skiing and she fell, hitting her head. She initially appeared fine and was joking about the fall. When the ski patrol insisted she see a doctor, she declined. She passed away from an epidural hematoma soon after the fall.

Another trip to the ER. I had a mark on my forehead where I fell so I was believed. Thank goodness the CT scan of my brain was clear, but the doctor admitted me to find out why I passed out. They started fluids as he told me I was very dehydrated. I don’t know how I got that way as I’m constantly drinking water or water-based drinks. Also, he told me I have orthostatic hypotension. My blood pressure dropped more than ten points when I stood up from both a sitting and lying position. I think that partially explains my dizziness.

The next morning the nurses told me some of the blood tests revealed “severe anemia,” — their words, not mine and they hung a bag of iron through the IV. That explained why I’ve been so exhausted. It felt good to have an explanation. They gave me laxatives and powdered stuff in my juice to help me have a bowel movement because the doctor wanted to see if there was blood in my stool. Despite their — and my — best efforts, I couldn’t produce. I also received another bag of iron on Thursday morning. I was discharged on Thursday with instructions to follow-up with a gastroenterologist for a colonoscopy to see if the anemia is caused by a slow bleed somewhere in my colon.

I’ve started taking iron supplements twice a day. One of my doctors told me it can take up to two months for my levels to get back up to where they should be.

  • Thursday, 4/18

I saw the GI. She is new to me and her process is first I see the NP who works with her, then the doctor comes in after they talk. The appointment seems to take twice as long as it should, not counting the time spent waiting in the waiting room. Obviously, the treatment plan is a colonoscopy and a panendoscopy (upper endoscopy), in which the GI will also take biopsies of abnormal tissues. She also wants me to do a new test called a SmartPill which is a separate procedure. The SmartPill measures the motility of my digestive system. The SmartPill is an ingestible diagnostic sensing capsule that travels every inch of the 30-foot-long human GI tract while making and recording key measurements.

© UBMD|SmartPill
Source: © UBMD|SmartPill

My appointment for the colonoscopy and panendoscopy is May 8th. The procedures have to be done in the hospital and not in an outpatient suite because I’m not exactly a low-risk patient. And when I see the cardiologist this afternoon, I have to ask her to fax a letter of clearance to the GI.

This post turned out to be much longer than I expected. The next two posts will outline how I reacted in response to these health scares, particularly the fall in the bathroom which admittedly could have been much worse. I'm still mulling over how this event spurred me to take action, while the stroke — though I kept telling myself I would — didn't.

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