So sorry for the delay in speaking about this… but maybe you’ll understand why in a moment. I’ve mostly been typing this with one hand, not a very efficient approach for me.
July had been pretty cool, I turned 60 without incident, Blaine turned 30 and the Free Geekers made it a really special day for him… I recorded part of it on my iPhone, and am trying to make it show up on YouTube (will let you know when it happens!)
There were a few stressful things at work at work but the huge project I was devoting myself to was going very well.
My mom had come up for a visit and we had a great time together quilt shop hopping and so forth. Soon after she left I had a colonoscopy (double yuk), but for the first time ever had no polyps (I’m in a high risk group) so I was on top of the world. I had scheduled a vacation day for the following day (July 24) because my oldest dearest friend and I were planning to visit Heronswood Nursery on the one day of the year it’s open to the public. But they switched the day on us, so we decided to postpone our nursery expedition til the spring.
I kept it as a vacation day, which was more or less a good thing because my intestinal system was taking its time getting back on track and I was feeling a little weak. So I spent nearly the whole day trimming squares for a very intricate quilt, and was so happy to finally be finished with it! By Saturday, I was feeling well enough to be out and about, so went to the Free Geek Volunteer Appreciation BBQ. One of the featured attractions was Blaine playing three players at once in a kind of chess marathon for nearly five hours. Not very surprisingly, he won every game (more than 100), not even a single one ending in a draw. My mom had made a quilt to supply for the raffle, which went to a very appreciative winner, saw lots of my geeks, had a great conversation with Rev Phil, so it should have been a terrific day.
But I just really wasn’t feeling well. And I kept raising my left arm, I didn’t really know why, but it seemed to alleviate some kind of growing discomfort. It was bothering me enough that we left early, and I went to bed really early. Unfortunately, by the next morning, I was in a world of hurt. Took some ibuprofen, napped, but by the evening, I was crying out in pain.
Ric tried his best to convince me to go the the ER but by then, I knew I was not even capable of sitting in an ER chair waiting for 5 mins., let alone the usual 6 or so hours required at our local hospital on a Sunday evening. (Been there, done that.) Instead, I just thrashed about on the bed, moaning and crying and even yelled at Ric to just leave me alone. I wanted no light, no sound, no movement, no input of any kind. Honestly, I was like a dog at the end of his life, wanting to find a dark corner under a porch where I could just curl up and die in peace. Don’t remember every feeling quite this kind of pain.
I thought I might be having a muscle spasm of some kind and I had some pills left over from when I had one a few years ago, so I took some, more ibuprofen, finally mercifully feel into a kind of stupor sleep.
The next morning my goal was to get in to see my doctor. Finally convinced the triage nurse to let me have the last appt. of the day (Mondays are not easy to get in). I somehow made it through the day and Ric took me in. Dr. T took one look at me and said he thought I was having a bad muscle spasm, prescribed muscle relaxants and stronger pain meds, which we promptly filled at the pharmacy.
The medication knocked me on my ass but in the brief moments I was conscious, the pain was still there and just as bad. Somehow I got my phone working and emailed folks at work that I was home sick (at least I think I did, but sometimes my messages went a little astray, apparently I am quite fluent in gibberish). [More on that next time]
Dear coworker and friend Sally, who has been through similar issues rushed over with some wonderful local camphor pain patches, a sling, and some tender loving care. She also referred me to an acupuncturist she had used, and I made an immediate appt. Wow, what pain relief I got!! I was so happy and started making plans to go back into the office.
How disappointing it was to discover the relief was temporary. My oldest dearest friend Joyce took me to PT and back to Dr. T. He did an x-ray and ordered an MRI. Other than medical appointments, I just took my medication and went into Rip Van Winkle mode. I learned that it is indeed possible to sleep approximately 23.75 hours per day.
By this time I was losing feeling in and use of my left arm. My two little fingers were utterly useless and my arm felt like it was constantly hitting a funny bone and randomly twitching. That’s when I learned that my health insurance HealthNet denied the MRI (after taking a week to decide). My doctor referred me to a neurologist, who gave me even stronger meds after examining me (apparently I told him I needed to lie down and since there was no exam table in the room, I just plopped myself on the rug at his feet. I don’t really remember this part but Ric assures me it really happened.) After my appointment there, I can only assume that his and Dr. T’s advocacy finally got HealthNet to approve an MRI.
The MRI showed two herniated disks in my lower cervical area, which were pinching nerves to my left arm. Very quickly I got an epidural spinal injection (a painful procedure, I must say) of steroid to help reduce the inflammation. It helped a little and very slowly the pain reduced.
At this point I was more concerned about how I couldn’t use my left arm. The morning when summoning all my might, I could not get fingernail clippers to clip a hangnail on my right hand was one of the low points. Even assuming I was lucid and upright enough to actually do something, everything I need to do or enjoy doing pretty much takes two hands. (Reading and watching tv put me right to sleep.)
It was finally occurring to me that living in a 24 hour drug induced coma was not for me. For example, when the doctor who did the spinal injection looked at me as I prepared to lie on his table, he took one look at me and said, “Well, I can see I won’t need to sedate you.” Since the pain was getting better, I started taking fewer pills.
Oh. my. god. That was not fun. Coming off the oxycontin was worst. Later, I counted out that I had only taken 16 of the 60 pills in the bottle, but I swear I was becoming addicted. Well, that’s not really the right word, but I don’t know if there is one. I didn’t get high, just went into a coma. The moments I would rouse I could still feel my pain, but mostly I was in a coma. When I say addicted, I mean that I think my body adjusted to its being there so fast it wanted to punish me when I stopped feeding it. I was also taking other powerful painkillers and muscle relaxers, so maybe it was the combination. Even the steroid had unpleasant side effects.
And oh my god, the insomnia. It’s such a bitch. Literally entire nights without one wink of sleep.
The drugs had also done a number on my stomach and entire digestive system, so that was another few days of detox in its own way while I suffered through trying to find that delicate balance between too much and too little. If you know what I mean.
I lost a lot of work time, believe I have used up all my sick time and now using vacation time as I make my way back. Fortunately, I have a very kind and supportive boss who has been expressing his concern through Ric and reassuring us that I’m not being abandoned! For which I thank my lucky lucky stars.
There was an evil little demon lurking in the wings while this was going on. As long time readers know, a year and a half ago we started getting some help for the first time with the personal care Blaine is not able to do by himself. Fran is just a wonderfully helpful presence in our household, carrying on while the medical system struggled to find the source of some serious health issues she was having. (It finally did but took more than a year, and there was absolutely no reason it should have. In this case, it was Kaiser, lest we think only HealthNet has not served people in this story as well as one might hope.)
But Fran and her husband were planning nearly a month long holiday in the UK (where Fran is from) during the month of September. Since we have no other source of help, I had been planning to take some vacation time in September and do some work from home, so I would not become exhausted and overwhelmed by doing too much as I have in the past.)
Okay, so I can’t even clip nails or type with my left arm. How the hell was I going to be able to get through this little challenge? Parts of his care are incredibly physically challenging. It had taken months to find Fran. In fact, no one was willing to perform the particular personal care Blaine needs was available from the state’s list of caregivers I was give to call, so when we met Fran and she learned of our plight, she went through the training to get certified just so she could help us. (Which is another long story exposing other unseemly parts of various bureaucracies.)
Anyway, to cut to the chase, Fran is a saint. Basically, she dusted off her angel wings and slayed the demon. When she watched me in pain and partially paralyzed, she set herself to finding someone to take her place. She found someone! Today is Pat’s first day on the job (she came all last week for training). The universe must indeed be smiling on us now because seriously, what the hell would we be doing otherwise?!
I’m feeling better everyday, pain still diminished but lingering, regaining use of my left arm bit by bit, doing some actually job work from home now (uh, yeah, even today, I forgot today was a holiday, kinda hard to keep track of days when a month goes missing!), and even did a bit of tentative typing with my left hand.
I drove my car for the first time in more than a month yesterday. I have PT and acupuncture appts scheduled, another epidural on Sept. 15th and a referral to a neurosurgeon, but in the meantime, I plan to work from home and phase back into the office. I miss my friends there a lot!
I’m so glad to finally feel I’m on the downhill part of this journey. I still feel incredibly disoriented. There are big chunks of the past month I can’t even remember. My apologies for all the unanswered emails, phone calls, and whatever else. Frankly, I can’t totally remember what I said and who I said what to. I can’t even imagine who I might owe apologies to…
In fact, next entry I will humble myself before all the world and reveal some of my instant messaging on drugs and demonstrate that my dearly beloved husband is more than a saint.