It has been a week from H-E-double hockey sticks!! Okay, I know I could spell the word, but I wanted my husband to know I’m still thinking about hockey, even if I don’t have the energy to watch it much this week.
Stress + fibromyalgia = mega flare-up. Throw in a generous portion of unusual physical activity, add a dash of medication. What you end up with is a nasty fibro hash. That’s been my meal this week.
Please allow me to outline my week – at least what I recall. I’ve been taking the muscle relaxants and pain meds enough that it’s a bit of work for my brain to focus.
Monday started out pleasantly enough. I had a hair dresser appointment at 9:30 AM. I was the only customer in the shop. Color and cut. We chatted about lots of things. Left the salon about 11:30 AM, looking spiffy and feeling pretty well.
My husband came home for an early lunch, since I had agreed to go with the priest to the nursing home in town to do a service for some of the residents. I wasn’t really looking forward to it. I did remember to dress appropriately for it, though. I’m always hot and nursing homes are too. So even though it was fall temps, I wore a sleeveless shirt – smart girl. While we were trying to share lunch, the phone rang. Since I figured it was just the priest calling to tell me when he’d be there to pick me up, I asked my husband to answer the phone. As he picked it up, he mouthed to me “South Dakota.” So I swallowed hurriedly and took the phone.
It was my Lakota friend. She had gone to a place where they have free phone calls for persons who have some kind of need. She would never have done that if this weren’t serious. It turned out she was asking if we could send some money for food. She had to quit her job due to a pinched nerve in her neck. I think she also suffering from depression after all that’s been going on in her family. She has lost 4 close family members to death in the past 4 months or so. One of her 3 daughters has been taken away from her because the daughter ran away and got into trouble. My “goddaughter” has been in trouble in school. They don’t have enough money to live on, especially since she could not do the housekeeping job. She says after she quit, she spent several days in bed because she could not find the energy to get out. I’m worried.
We figured a way to overnight some money to her and my husband left to do that. I finished wolfing down my yogurt, then got ready to leave. Good thing – the priest showed up 5 minutes later. He gave me 7 more hats that a parishioner had given him for the winterwear drive we had been doing for the Cangleska Shelter on Pine Ridge Reservation. Great – all the boxes are full and sealed.
We got to the nursing home around 2 PM. Our interim rector has worked with Indians before and I swear he operates on “Indian time.” The service was in the home for persons with diminished capacity. After we were done, I told the priest that I was saving my medicines in case there comes a time when I’m beginning to lose my mind. I will not live that way and God bless the caretakers who can do that work. I could not. After the Communion service, we patrolled the hallways of the wards with an employee who asked anyone who had not attended if they wanted to receive Communion. I got home about 4 PM. Tired, mentally and physically – no grocery shopping today.
An interesting aside: Although the majority of persons could not follow the service actively, when it came time to recite the Lord’s Prayer, nearly everyone participated. From memory. So those of you who are teaching your children some memorized prayers, keep it up. They will have something to hold on to when lots of things start slipping away. We all need an anchor of some kind.
I got home just in time to make dinner and try to relax until it was ready. All of 15 minutes. We ate dinner and exchanged details on our days. I actually got to watch Dancing with the Stars, the competition show. I was really tired.
Tuesday morning I was up early with a headache trying to start. Walked on the treadmill anyway. Ever since I had dental work done last week, I have been having pain in the left side of my neck and the TMJ there. It wasn’t difficult dental work and I didn’t have to keep my mouth open very long, but fibromyalgia doesn’t really care about the details. I also think the repairs changed my bite just enough to cause repercussions. So I took my usual meds (muscle relaxant & pain med) and planned to take a shower then put on a Thermacare wrap on my neck. The phone rang at 11:30 AM. It was my husband’s sister. My father-in-law had been at the hospital in Worcester for some testing and they had found fluid around his heart. They were keeping him for further evaluation and she wanted to know if either my husband or I could go to be with my mother-in-law while all this was going on. The day changed to Plan B in the space of a one minute phone call.
I called my husband at work and he came right home to pick me up. When we got to the hospital, we headed straight for the information desk (3rd floor entry) to try to track down my in-laws. Since my father-in-law had been experiencing mild shortness of breath on exertion, his doctor had scheduled him for an echo-cardiogram. We set off for the cardiology dept. – 2nd floor south. We got to the testing lab waiting room and asked for my in-laws. The pleasant receptionist went back to check and came back to inform us that he had been sent to the ER for evaluation.
We retraced our steps to the elevator, then trekked off to the emergency room (1st floor). It was a LONG walk. If I’d known I was going to be doing all this walking, I wouldn’t have done the treadmill this morning. We got to the ER and located my father-in-law. He didn’t look sick. His color was good and so were his spirits. And we waited. . . and waited . . . I’m sure you know the drill. In hospitals, it often is a “hurry up and wait” situation. Eventually a number of persons began to come in and talk to dad. Most of them asked the same questions and gave the same information verbatim. It didn’t matter whether it was the medical student, intern, resident, attending, cardiologist or interventional cardiologist. We watched 2 ultrasound exams of his heart. Very interesting, though there seemed to be an incredible amount of fluid around the heart for someone who looked so healthy. Even the doctors expressed amazement.
Dad was taken for x-rays. Dad was admitted. Over 3 hours later, having been waiting on the same bed in the ER for all this time, Dad was finally taken to the cardio-vascular for a procedure to remove the fluid. We waited in the critical care waiting area. About quarter to 5 PM, the younger surgeon came out to tell us all was well. They had removed 1.4 liters of fluid. 1.4 liters?! How had that much fluid fit in the sac that surrounds the heart? They don’t know the cause yet – they have to send the fluid for analysis before they will know what caused it. 5 minutes later the cardiologist came in and told us the same thing – again nearly verbatim. I wonder if these guys practice? At this point, Dad was moved to a room.
Mom has really bad arthritis and has really painful knees and some trouble walking (she has a cane). So you know where Dad’s room turned out to be, don’t you? At the farthest end of the cardio ward. The plan was to watch him overnight and if all seemed well, he’d be going home the next day.
When we finally left after 7 PM, my husband drove his mother home in Dad’s car and I followed in our car. I can’t remember when I felt so exhausted. Even with meds, my body ached and I could tell it would not be happy the next day. There had been too much standing or sitting on very uncomfortable chairs for someone with fibromyalgia. Thank God for the meds, or I wouldn’t have lasted as long as I did. When we got home, I was too tired to sleep and too tired to concentrate on anything. I couldn’t read, write this or even watch TV, though I did manage to muddle through the result show of Dancing with the Stars.
Wednesday is usually my husband’s half day anyway, so we planned to go see him after my husband got home at 12:15 PM. The phone rang at 8:30 AM. I had already taken my usual flare-up meds and was just starting to wash the dishes that had been left in the sink. It was my sister-in-law again. She had taken Mom in that morning because the nurse on the phone had told Mom that Dad had had a bad night. Something about his heart racing. She wasn’t sure. She thought we should know. I tried to call my husband to tell him the latest but he wasn’t at his desk. I called back through the switchboard and they located him for me. I suggested he call the nurse’s station first to get accurate info before he came running home. He did and called back to say he’d be home at the usual time and we’d go in then.
So I made out a detailed grocery list for my 25 y.o. Asperger’s Syndrome son, gave him some money and gave him the job of doing the shopping I could see I wouldn’t get to today either. I also left the dishes for him to finish. I got ready to go in to the hospital. My body was really giving me a difficult time. And because I’ve been taking the meds for a couple of days now, I was also a bit “spacey.”
When we got to Dad’s room, Mom was there with him alone. My sister-in-law had gone back to work. They still didn’t know what was causing the tachycardia spells and expected that Dad would be staying another night. He was not happy. But at least he could get up to go to the bathroom. He wasn’t on bed-rest. Ah, but he spoke too soon, as we’ll see. I was really struggling to be upbeat and pleasant, but I was fighting a losing battle. So we left around 3 PM to get something to eat. My husband took me to Bugaboo Creek Steakhouse, where I was mostly good and ate the trout. We were supposed to stop at the store on the way home, but I was getting really sleepy, so he took me straight home.
It was Halloween and we had not planned to be home. I had no candy or treats to dispense. So we shut the house up like a tomb – all the shades and curtains drawn, only a small light, turned off the automatic motion detector light at the front door. I tried to write last night, but was too foggy to do it. I could barely see properly my eyes were so tired from pain and meds.
My husband went back to the hospital to see if Mom needed a ride home, which she did. So after a brief visit, he took her home and got back here about 8 PM. It turns out Dad is back on bed rest restrictions. Apparently his heart speeds up like crazy when he moves around. He is really not happy now! My husband then relaxed and watched hockey while I tried to play computer games with little success.
Thursday is here and I still feel like I’m running on fumes. I have had a little more focus this morning and I’m trying to get as much as I can done before the energy runs out. My husband is due home for lunch soon and if he hasn’t called the hospital yet, I’m sure he’ll do it then. Dad’s brother and his wife took Mom in to visit Dad this morning, so our job will likely be the latter part of the day.
I have a meeting of the Search Committee for the new rector at church tonight. We’re finally starting to work on candidates for the position and I really should be there. What I’d like to do is go to bed early, but I know that won’t happen.
We had planned to go to a hockey game in Albany, NY tomorrow night and sleep over, returning Saturday. We’ve cancelled that reservation. Good thing we didn’t have the hockey tickets already. We had planned to have Mom & Dad for dinner on Monday night (11/5), but that’s on hold. We have plans to go on a mini-vacation in Maine for our birthdays next week (Wed – Sun) – I think that’s still on, but since we don’t know what’s going on with Dad yet, who knows what will happen to that trip. It may have to be postponed.
So it’s Thursday and I’m trying to catch my breath. My son just left for the post office with a couple of boxes to send off – one to my Lakota friend and one to the Cangleska shelter on Pine Ridge. Time to take a few minutes to be grateful.
I’m grateful for:
- Dad agreeing to go to the doctor in the first place and that he’s getting good care
- Having the resources to be able to help my friend’s with necessities
- The parishioner who offered to ship out the parish’s boxes to Cangleska and her husband who came to pick them up
- No one in our families showing signs of Alzheimer’s
- Having family that understands a little of what fibromyalgia is and doesn’t expect me to pull all the weight by myself
- The fact that my son, who has Asperger’s Syndrome, functions at a high enough level to be able to help out with household errands
- This quiet time I have right now to put my thoughts together before the running starts again
I wonder what the rest of Thursday will hold?