Those of you with fibromyalgia will know what I mean. When things go along normally, with low stress, it’s a bit easier to have the energy you need to get through the day. But when you start having days like I’ve been having, it really saps all the energy you have.
It all started on Tuesday, when I picked up my mom and step-dad to take him for his 1 day follow-up visit after cataract surgery. I hadn’t seen my mom since Christmas and when I talked to her to see how they were doing, I’d get the standard “I’m fine – how good can a 74 y.o. woman be?” When I saw her Tuesday, I was appalled!
She got winded walking to the car. Really winded. She couldn’t draw in a full, deep breath. When we got to the doctor’s office, we had to get a wheel chair for her! So while we were waiting for my step-dad to see the doctor, I spoke to the receptionist and got the number for cardiology. I called my mother’s cardiologist (who wasn’t in) and spoke with his nurse. I explained her symptoms, etc. The nurse said she would speak with the doctor in the morning and contact my mom. She was true to her word and Wednesday my mom called me to tell me that they had moved her appointment up to Thursday. No problem, I said, I’ll pick you up at noon.
Thursday, my mom was even worse when I picked them up. It wasn’t anything specific. I seem to have an intuitive “sixth sense” when it comes to medical and health things. I knew somehow that things were getting worse. When we saw the doctor, they were a bit puzzled because the oxygen test to see how much oxygen she was getting read 97% – very good – even though she couldn’t walk across the exam room without having a coughing fit. And when she coughed, she couldn’t catch her breath. The doctor seemed inclined to send her home with a prescription, until I told him about the long, 15 step stairway she would have to climb to get into her house. My step-dad piped up to tell the doctor he has to basically pull her up the stairs lately.
The decision was made to send her to the ER for some tests, then probably admit her for additional tests. The ER was full as usual, with patients in beds linings some of the corridors. My mother was luckier than them. She was sicker and a nurse from the cardiology department had brought her down to the ER. So she got a “room” within about 10 minutes. Then you have the parade of professionals, everyone specialized in something – from taking vital signs to taking a medical history to putting in an IV. I called my husband and asked him to leave work about an hour early. My step-dad had forgotten to bring the eye drops he needs to take at specific times due to his cataract surgery.
My mother has congestive heart failure. 5 years ago she had open heart surgery to replace the aortic valve (and they did a double by-pass while they were in there). She has had the carotid artery on the right side surgically repaired. She is mildly diabetic (no insulin, only pills) and has scleroderma. She has high cholesterol (big surprise there) though she watches what she eats quite well. It’s the genetic form, I guess. I have it too, but unlike my mom, I started taking Lipitor as soon as we discovered it. She waited for years. She’d read scare stories in the news and decided she would be the one who had the negative effects. As you’ll see, this becomes a pattern.
Last June her cardiologist told her he wanted to do a heart catheterization because she was having some mild symptoms. She told him there were some things happening and she wanted to wait a month or so. She and my step-dad have been working in my brother-in-law’s small store. She couldn’t just leave him in the lurch to take care of her health. Over the past 3-6 months, she’s lost 25 pounds!! Without trying!! Her primary care doctor has been looking for reasons with bloodwork, CT scans, nuclear scans – to no avail. They found nothing except the fluid in her lungs, which appears to be from the congestive heart failure.
She worked out at the gym for 25 years to prevent all these problems. She went faithfully, at least 3 times a week and only stopped when the cardiologist or someone one of her doctor’s told her she should stop because the heart valve needed replacing. She shouldn’t have stopped – she should have just cut down, if you ask me.
Lately, she’s lost 25 pounds without trying – not a good thing! Especially since she’s retaining a LOT of fluid, which increases your weight. So her weight loss is probably even more than 25 pounds. She wears a lot of high neckline clothing and lots of layers in the winter, so you can’t really tell until you hug her that she’s become really frail. The view of her in the hospital gown was scary – collar bones protruding and upper arms with barely any muscle mass.
The day in the emergency room took it’s toll on my fibromyalgia. In the midst of mostly standing around, trying to amuse my parents, answer their questions and make sure the medical staff was attentive to my mom’s needs, my back and shoulders started to “scream” for attention. I took a break to go the the food court and get some soup – I needed something in my stomach so I could take pain medicine. I didn’t dare take a muscle relaxant – I’d have been sleeping very shortly and I was the designated driver.
We had arrived in the ER about 2 PM. They had monitored my mom and done a few tests – chest x-ray, bloodwork. Finally about 8 PM, they found and moved my mother to a room on the telemetry floor. They hooked her up to the heart monitor and we “begged” the nurse to find her something to eat – she had not eaten a thing all day! The nurse suggested toast and juice. That’s just what a diabetic who hasn’t eaten all day needs – carbs and sugar. We went back down to the food court and got an egg sandwich for my mom so she could have some protein. I got home about 10 PM.
Friday morning, after a less than perfect night’s sleep, I work up to find the fibromyalgia trying to flare up – still. Again, pain meds but no muscle relaxants. I had to pick up my step-dad about noon and go back to the hospital. My son came with us and his grandmother was very happy about that. Unfortunately, it only helped raise her spirits. Her blood pressure was still running low and she still wasn’t breathing very well. Shortly after we arrived, they took her down for an echocardiogram. Since I had to be home to make dinner and not forget to pick up a prescription from my own doctor’s office, my son & I left the hospital about 3 PM. Got home about 4 PM. Made dinner. Ate about 5 PM. Left to visit my mother-in-law (it’s her birthday!) about 5:30. My sister-in-law and her beau also came (we hadn’t expected that), so it was a small party. We stayed til about 8 PM.
When I got home, I had people to contact and chores to do. I got to bed about midnight. I’m starting to feel like a hamster on a wheel. My brain doesn’t want to shut down – it’s thinking of all the things that need to be done – at my house, at my mother’s house, at church, planning and arranging and running to the hospital. It makes me tired just to think about it!!! That’s why I took some time to stop and write. I thought if I got some of it written down, maybe I could get it out of my head so there’d be room for some new things.
Don’t forget – I’m the strong one. So I not only get to deal with my mother and her medical team. I have to tend to my sister (who works full time and has health issues of her own, like migraines), my brother-in-law (who hates hospitals because he spent too much time in them after being wounded fighting in the Christian militia in Lebanon years ago), my step-dad (who is 83, had cataract surgery 3 days ago and has that humongous house to rattle around in when my mother isn’t there), my son (who has Asperger’s Syndrome and can have odd reactions to emergencies), my husband (whose father is still in the midst of chemo for lymphoma and needs to be driven back and forth the week of his treatment), my church responsibilities, my own health including my appointments prior to the bariatric surgery, and last, but definitely not least, my sanity.
Well, I’d better get my ass moving! I’ve got to finish the laundry, water my plants, go water my mother’s plants, call her friend to let her know she’s in the hospital, go shopping for a bed jacket for my mother who is “freezing” at the hospital, grab a bite to eat and head back to the hospital for another evening.
Wish me luck. And say a prayer – for her or me or better yet, both of us!!!