9-1-16 Post-Pennsic Med-adventures

The second half of August was an adventure in Medical Land. I am so looking forward to getting out of it.

We had been looking forward to getting home from Pennsic and having the doctor tell us what was going on with my pain and other symptoms. I rode into his examining room in a wheel chair- preserving my energy for sitting up.  We had vitals (I’d lost 25 pounds that month), history taken, Dr. Quirbach d tapped my kidneys which were a bit sore, and diagnosed relapse. We went over to Walmart, picked up the prescription (nitrofurantoin) and went home. I’m pretty sure that the girls were getting through their backlog of emails. I had no interest in much of anything. I was looking forward to feeling better. Willow watched Avi’s kids the next day, so the guys at Winkle’s delivered her car here. Generally during this week we clean up some of the mess we left behind when we went for Pennsic. Not this year. I felt about the way I did at Pennsic. I spent most of the time dozing and showering to get my muscles to shut up.  I know we usually restrict water use at the end of the summer to spare the well, but I figured I’d take the risk. I talked on the phone to friends, heard other stories about pain pills not working.
Wednesday moring I woke up, let the cats out, and showered at 6.  I fell back asleep and was rung awake around nine by the phone ringing- there was a problem with an automatic bill from changing the cards when we had the identity theft just before the war. So, weak, bleary from no contacts, getting out of a water bed, I tripped and fell out the door into the hallway, dropping the phone. I was a bit disoriented and tangled in the stuff that was needing to be put away out there. I was still weak and blurry, so I called to the kids for help, alternately with calling to the person on the phone not to call an ambulance- when I found the phone she agreed to call back. bruise
I’m not sure just what it was about the fall, but it seemed like the last straw. I didn’t think I’d hurt myself. (although I did get one spectacular bruise on my thigh- I have no idea what I hit or fell on. It didn’t “come out” until the next day.) But I shouldn’t have fallen, the weakness was unusual.  Earlier in the week I’d noticed that I couldn’t lift a half full milk bottle, and watched, checking, Monday morning I could life one pound, but not two. We hoped for some sort of reason why I’d hurt and why I was weak. (Also, I had something I was having something I called “The princess and the pea syndrome”.  I was hyper sensitive. If my hair came down and brushed my neck it felt like steel wool. During the war I’d given up wearing a bra because the straps dug in so hard. What was that about? Later I learned that this is one of the symptoms of Lyme.
But where was Willow? Apparently she had been woken up around 8, hearing a cat meowing. Looking outside she’d discovered Pyewacket hanging in the juncture of two saplings. She had to reach up to lift down this unhappy cat from above her face. (scary) Was it good or not that Pye’s hind quarters were cold and seemed unable to move? Not for Pyewacket of course. When I fell, Willow was off taking Pye to the vets. They couldn’t tell right away what was wrong. They took him in overnight for “observation”, an X ray, and an IV bag of fluid. Before she got to the vets, his tail had started twitching, and Willow was rubbing him, to get the circulation going again. He got back home the next day, with instructions to stay inside until he’d fully recovered- the end of the month. He had recovered completely a few days before that, and I take that as a good omen for me.
So Willow came home and took me off to the Emergency Room at Saint Joseph’s Hospital at Nashua. We talked about which hospital, but we decided St. Joe’s since they were in the same network as Dr. Quirbach, and so share records. That might minimize or prevent duplicating tests- we hoped. Actually, I’m not sure it does. I don’t know any doctor who trusts the tests of another doctor or lab.

We got there noonish (by our notes) and spent a good deal of time- first the usual admission problems because we actually read forms before signing them, and apparently the generic admission form for hospitals everywhere includes a paragraph saying that you’ve been giving some form which they hadn’t given us yet. (Also the patient bill of rights, which they had.) Lots of hospitals don’t give you that form until a later point in the process, but we always make a point about it. If there’s a legal document with my signature on it, it had damned well better be accurate. They were willing to leave me sitting there until I signed it. “We don’t give that to you until you’re admitted.” Fine, I said, strike that out of the admissions form. They figured they can’t, so we always end up in a stalemate until some legal genius suggests writing in “not yet given” in the margin by the offending lie. Sheesh!
Finally admitted, they started with putting in an IV line, and drawing the first blood for tests, then taking history. Unsurprisingly, I was dehydrated, and they hung a bag of water. (We speculated about how much that costs.) About an hour in they gave me morphine, which did make the pain go away for about an hour. After the first bag of water I was able to give them a urine sample. At three they tried Dilaudid which did shut the pain down, but made me feel funky, and I didn’t like it. I did fall asleep, but the pain was back in 45 minutes. Finally saw a doctor around 4. I got an MRI, and an x-ray, then another x-ray. My white blood count was up, my salt was one third of what it was supposed to be, They decided to put me in overnight for observation- like the cat. Getting me to a room took until about nine. (A dinner was sent around 5:30, but I wasn’t allowed to eat it until the burger and fries were cold and rubbery.) The emergency room protocol assumes that the patient might end up in the operating room, and is not good for everyone else’s care.
We’d started for the hospital around 10, and luckily picked up food on the way. Mid-day the girls went off to eat, and they also called and rescheduled an appointment with one of their doctors that was at 2. (She could have gone had we opted for Peterboro.) Ah yes, when one person has a problem, it disrupts the whole family. We decided who to tell about it, so fewer people would worry. If you’d like to know about stuff like this right away, let us know.

By the next day I’d had 6 bags of saline, and my salt balance was good, my urine and blood showed no infection, and I felt better. Sadly, I had come in as “a falling risk”, and that’s how I was treated. They gave me some pain meds: oxicodone, percoset, and floxi something the nurses liked because they could “tuck it in between” the more controlled pills. (I name them because of how often people ask what you’ve gotten. When AElfwine was having his knee surgery everyone asked but since he was on Demerol, he couldn’t tell them until we came up with the idea of writing it on his hand. Then all he had to do was remember that it was written there.) I tried to explain how just letting me shower would help with the pain- but I was a “falling risk”, and they wouldn’t let me use the shower. (feh!)
That weekend the girls were selling at Raye and Joanies new conference http://popcultanimecon.com/, heading out Thursday night (I think). I decided that they’d worry about me less if I were in the hospital, knowing I was being taken care of. I would love to tell you more about it, but I didn’t really hear much about it.
What I did do was get thoroughly sick of being in the hospital. I hated it. I hated knowing how much it would cost, and me uninsured. I hated that I hurt and they wouldn’t let me do the one thing I knew would take care of the pain. I hated being left alone so much (although Mark and the girls came to visit). I hated being treated like a falling risk. They didn’t even want me walking to the bathroom, they wanted me to use a commode next to the bed. I only saw a doctor once a day. The food was OK, but my appetite was still almost non-existant.
Despite my theory about my being in the hospital being reassuring to the girls, I wanted to get out. I have  no idea (yet) what a day of “observation” costs, but I can imagine it’s a lot. I figured that at home I could at least run hot water over me, and John could feed me as well as they could as long as I didn’t need any more IV saline. I’d probably just gotten very dehydrated during the last week of the war. So I showed them I could walk and climb stairs, get in and out of chairs, and all the little tricks they thought important. Both Steve and Mark showed up, and offered to take me home. Finally the doctor did show up, and officially released me- that only took about two hours. We stopped at a steak house for dinner, and I got about halfway through a small steak. I could walk, but was still weak- and chewing is harder work than it should have been. I was VERY happy to get home and sleep in my own bed. Had I but known that I was going to run the well dry, I might have stayed in the hospital and kept badgering them to let me shower. I don’t know if it would have worked once I was considered a “falling risk”.
So I got home to my own bed, and chatted a lot with Megan and Liz on the phone, and waited for the girls to get home.

Sunday John brought me a sandwich and I had a bit of trouble chewing it. My tongue felt thick. Also my contacts kept slipping off my corneas- hindsight tells me that that was my eyelid becoming looser. I was chatting with Megan who was worried about a stroke- That’s something you don’t play around with. Still, remembering how useless it was to Heiner when Lorraine took him into St. Joes at the first sign of stroke (they gave him a baby aspirin- then he had a massive stroke), going back in with nothing more clear than a bad feeling, but all after noon I kept doing those “check for stroke symptom” tests. Then at 5:45 I saw my reflection in a dark spot in the computer, switched on the camera and smiled- got this image. I immediately called Mark to come take me to the hospital, and called the girls to see when they’d be getting home. John and I got a bundle together, and I took an aspirin, just in case. I still had no other of the stroke signs, but that one was pretty clear. Photo on 2016-08-21 at 17.45

I sent a few people the image- probably worried them, but, I believe in communication. Mark arrived and took me to St. Joes. Willow and Kat were waiting by the ER door. We didn’t bother fussing with the admission problems- got in and got seen fairly quickly. This visit was from about 7 to 11. IV line put in, EKG, blood drawn, Cat Scan, I don’t know what else. This time they were even less caring than before. I’d gotten some heating pads to keep myself comfortable, they forbid us use them- I got a cramp and I asked Willow to massage it and they told her not to, (no pain med either), nothing by mouth until we demanded the wet sponges. They were most unfeeling and nearly cruel. If you need to have these measures, then at least you show some caring and offer comforting things and explanations, not just snap out instructions and desert the patient!
Happily, they didn’t keep me. They decided fairly quickly that what I had was Bells Palsy. Since Kat had had Bells Palsy a couple of years ago, we knew that it was not horribly dangerous and resolves in about a month. I don’t know how many people get the diagnosis and respond with “woo-hoo!”, but I did! What a relief. I suppose most of them may have also been thinking stroke, so it may not be as few as I imagined originally.
So a new batch of prescriptions- Valacyclovir (apparently a specific for Bells), and Prednisone to reduce inflamation. By the time we got out it was 11 and almost all pharmacies were closed, but we found one and I started the new pills. (and got a new eye patch to decorate- with Bells if your eye doesn’t close all the way it can get damaged, so you tape it shut, with lubrication). Well, better than a stroke.
That would be Sunday, the 20th. The next day I called the hospital business department to try to find out how much this was all going to cost us. The woman couldn’t tell me, only that it may take a month before they actually post the full bill. And that the hospital never even finds out what the doctors bill for.  Really! She advised me to immediately get on SSI, and gave me a string of papers I should be getting together (with my copious free energy). She even expressed irritation that she’d tried to call me while I was in the hospital, but my phone was “always busy”. I told her I hadn’t used the phone and had no idea even where it was or if there was one. I’m not saying she wasn’t doing her job, but trying to shift her failure on me has left me with a less than friendly feeling toward her. Thank goodness I will never recognize her with my memory for names and faces.
Willow suggested that we try a go-fund-me to try to help with the bills. I was a bit uncomfortable with that. I figure most of our friends are as broke as we are, but she put one up on the 23rd, and 89 people have already donated. I am incredibly touched! She was right, there are people who can only afford $5, and people who can afford more than $100, and the “widow’s mite” is as precious to me as the bigger donations- but since I expect that before we’re done it’s going to be much more than Willow’s $15K estimate, I love that people are giving us so much!

So- Bell’s Palsy. It means that the muscles on one side of your face go slack. I have to pinch my lips around a straw to suck on one. I have to use my finger to clear food out of the right side of my mouth. You don’t even want to know about trying to spit after tooth brushing. Kat has been able to give me good advice on dealing with it. (In toothbrushing, wiping with a washcloth is apparently the best I can do.) Luckily, swallowing remains fairly easy- if I tip my head to the left, everything feels quite normal. I did wear the eye patch for a while, but it turns out my eye does close when I try, and that’s a good thing. On the other hand, because the contact won’t stay in, I am only on one contact. Do you remember I am on two foci in the contacts? Distant and near? I opted to wear the distant, because the near is at about book range, and I have somehow lost the other one. When this resolves I think I’ll have to get my eyes checked rather than just reordering it. I have no idea if this actually changes your vision. I do seem to generate a lot more tears (and a lot less saliva), so I have to wipe my eyes a lot, and drink a lot.
Don’t know if it was the steroids (Megan told me lots of stories about various reactions to them, although approving of their utility), but I felt weaker and had serious problems with the runs. The kids put my camp bed up in the living room for me so I could nap without dealing with the stairs.
Another thing, I didn’t know, is that they have now associated Bells with Lyme disease. I found this out when I saw Dr. Q again

Life doesn’t stop when you get sick of course. Willow has been scheduled for an intake interview to see a psychiatrist for her depression all summer, but the appointment kept getting shifted up, month by month. Finally she got in to have the intake interview. The guy told her that she was honest and was dealing well. (Tell us something we didn’t know!)
Kat discovered that her air conditioner was not only not working, but had been leaking on her carpet which had begun to rot. She spent the whole week trying to dry and save it. I guess last week they were prepping for the conference. I had been hoping to go to the Heathen Thing this weekend, so I guess it’s good I never managed to make the reservation.
On the other hand, with me not cooking, we had a lot of loss from the fridge this week that just went bad before we got to cooking it. I’m the one that gets supper on the table with meat, starch, veg and salad. Mostly been eating yogurt and fruit and anything that I think I can actually swallow. The girls have had experience with trouble eating before- I am learning to understand those problems.  Also, with so many drugs, I started looking up what nutrient each antagonizes/ neutralizes/ shouldn’t be taken with/ burns through, etc. I personally think the doctors who prescribe them should do this for us, but know that they don’t. It does complicate creating an effective schedule for taking the meds and vitamins though.

The next day I saw Dr. Quirbach again, and he told me that Bells is now associated with Lyme disease, and ordered those tests. I suggested he check the test results from the hospital first in case they’d ordered them, and they had. The results weren’t back because they’d sent them on to the CDC for further testing. I’m still not sure what that means. Once the Lyme was confirmed, he explained that the test basically shows if you have anti-bodies, which you will have for the rest of your life, so all it shows is that you’ve had it. I think the CDC decides whether you’ve been infected with Borrelia burgdorferi or Borrelia mayoni. I haven’t asked which I have- I should. At the CDC I think they do the IgM and IgG Western Blot.  Unfortunately while the pain seems to have become less of an issue, weakness has become more of one, and I haven’t had the energy to pursue much since then.
I have had the producer of the New Normal to run archived shows until I can speak clearly again- I hope another couple of weeks. I have pretty much dumped everything for Changing Times-Changing Worlds on the other organizers, although they’ve asked me to stay on as co-chair. We can hope that the Lyme is no longer dominating my life by then, and can pretty much plan that the Bells will be resolved.
At home, while John does the heavy lifting, Willow is doing everything she and I both used to do together. And she’s babysitting Avi’s kids several days a week. This is actually good, since all she has to do is keep them from killing each other and setting fire to the house, she can nap on the couch and get a bit of rest. Being who she is, she also feeds them, does laundry, runs errands, cleans, and tries to reinforce Avi’s rules. This is hard because Bianca could be described as having oppositional defiant behavior.
I think this sickness may be trying to teach me to let other people help, but it’s hard. Very hard for me.
With my last doctor’s appointment, Willow was sitting, so she brought the kids here and Kat kept an eye on them, while Willow took me to the doctors. (We now have a walking handicap sign for the car, which is very convenient since I don’t walk more than about a hundred steps these days, and use the wheelchair carts available in stores. Taking showers can feel great, but reduce my legs to wobbly, and I am grateful for the grab bars by the toilet.
Even “normal” doctors now say that the Bells recovery is helped with acupuncture and I’ve seen a local acupuncturist twice so far, but I haven’t noticed much improvement. What I can notice is that my normally heavy eyelids just don’t seem to show on the right side. What’s up with that?

We went through several variations on couch- first tried a cot with an inflatable on it like I rested on at GNEW, but I managed to tip that over trying to get up. They then moved the garb chests in, and put the mattress on that, but it was so high I couldn’t get off without help. Then we remembered the futon couch Willow got a couple of years ago and has been waiting in the great hall- collecting everything that gets dumped in there on top of it. Somehow they cleared it and brought that in. That has worked pretty well, and I can now nap downstairs during the day. Which I do. I am amazed, I’m sleeping 10 hours a night then napping once or twice a day for a couple of hours. I really keep expecting to get better with all this sleeping, but so far, not obviously.
This past month has been running together in my mind. I use the journal to try to figure out what happened when. Clearly I have made improvements because I am no longer having pain, triggered by just about anything. That Thursday I tried to follow the CTCW planning meeting but had to give it up. I am SO much better than I was then. I was experiencing the timelessness of pain, and the loss of hope when nothing could make it go away. I am so sad to think of how many people are in that condition all the time.
Within the family we also cannot get away from the basic family dynamics. People keep saying “Let the kids step up to help, you’ve helped them for so long.” They don’t seem to understand that this is like saying “Let the lame guy pull the cart, he’s been riding in it so long.” There’s a reason we live together so we can all help each other. I was the only one in good shape. Now Willow’s pushed herself to the edge of collapse, and Kat has been teetering there since Pennsic when she pretty much used up her “coping with people” points. Experience has shown us that the only “help” our society has to offer is to temporarily rip us apart, traumatize us, and then tell us to run around with money, time, and other resources we don’t have, to help ourselves (avail ourselves of their pretty much useless offers). They do not see that the threat of their “help” adds another layer of stress on people who are near the edge already. Their systems are set up to be convenient for them to see a maximum number of people, thus proving on paper that they’ve put an effort in. I sure hope they help someone, because I’ve never seen it.
I love the outpouring of good feelings, but am sort of afraid of offers of food (cooked to someone else’s taste), or help that is not what we need. I hate to turn offers away because it’s good that people want to help, but I’m so tired I can’t take it. It makes me feel ungrateful, or at least as if I’m behaving ungratefully, but I have so little energy.

Finally Dr. Quirbach did call with the confirmation of Lyme Disease. (No, I never saw a tick bite, so we’re guessing when it may have started.) The drug for that is doxycycline, and the good news is that everything else was canceled. (I had been very disturbed about potential side effects from long-term steroid use, which now seems not to be necessary.) The harder news is that you are supposed to avoid milk products, indeed anything with calcium, two hours before and two hours after you take it. But then in between, DO take calcium, magnesium, and probiotics. I was really confused by this and grilled everyone I could, but have been multiply reassured that food doesn’t stay in the stomach for more than two hours, and once the doxycycline is in the blood stream (after 2 hours), it can’t bind with calcium that’s in the stomach and make both useless. Then I got into how much Calcium? Because it’s in flipping everything! Apparently we don’t need to worry about the 44mg in a potato or orange, but only the 269 in collard greens, 100mg in Kale, (or the 86mg in 2 cups of broccoli? Who eats 2 cups of broccoli? That sounds like 43mg- same as the “safe” potato.) I was relieved that there was only 4mg in a pat of butter- great, I can eat it on my oatmeal as long as I leave off the milk. Wait a cup of oatmeal has 187mg! That’s more than the 150 in the half cup of milk I usually put on. By and large, I am confused. I have been reassured that basically they want us to avoid the dairy and any pills that could have calcium and magnesium in them, but don’t worry about most foods.
I had no idea how much dairy I used habitually, much less how much calcium is in most food. I have divided the day into milk and meat (as if I were keeping kosher) and don’t eat things with the milk within two hours of taking the doxycycline. But it makes eating things without thinking really hard. Also, because of the Bell’s, it’s hard to chew or open my mouth wide, so soft things like casseroles are easier. Our favorite casseroles are cheese based. Sometimes when I’m organized I can get dinner on at 6 or 6:30 and have a milk meal. I’ve been eating a lot of soup. Happily, I haven’t had the problems with the runs that some people get with doxy. I seem to be OK as long as I eat something with it. It wouldn’t surprise me if I’m luckier than most. My life tends that way.

Perhaps it’s the doxycycline that finally did for the pain, because I don’t have much more than sore muscles now, and the journal records that I did before the Lyme diagnosis. I doubt that simply diagnosing it would cause the pain to stop, although it’s not impossible. Pain is your body’s way of saying “There’s a problem here! Look at it! Do something!” Is it the looking or the doing that made the pain recede?
That set the pattern for what I’ve done since: I take my pills, the kids feed me, I nap and watch movies- and TV. Kat suggested the Great British Bake off, and I have really been enjoying that. I have finally been able to check facebook again, although not for long. My eyes keep watering and don’t focus well. I am trying to deal with my month long back up of email- keep finding things that needed dealing with that day. I really want to get to the financial papers, but it’s hard to call and speak when my mouth flaps when I talk, and it’s true, aside from energy, I haven’t got the concentration I need. I only was able to pick up a book a few days ago (in September), and that fiction.
The last thing that I want to mention- to catch up to the end of August, is that my showering sadly seems to have been too much for the well at the end of summer. It ran dry.
My dear sister Liz tried to buy us a “refill”. Pool companies will refill wells- but ours isn’t a well. It’s a spring head. The ground around here is usually very moist, but not at the end of the summer when it hasn’t rained recently. The water table is low, and there’s not much to put water into. Downhill from the spring head is a 800 gallon cistern. Apparently that’s about how much they expect a family of four to go through in a day, but we get by on it with hand washing dishes, and conservative use of flushing and washing laundry (with water saving machines). But I was showering often and hoping to get lucky, and pushed it too far. We are empty and waiting for nature to help. I was able to convince Liz that if they put 6000 gallons into a 800 gallon cistern, 5200 gallons would spill into the ground around it, and despite their assurances that it would then go into the “well”, it would, as water does, sink down to wherever the water level is now, and then flow downhill.
So, the girls took the laundry to the laundrymat. And kind people have been bringing us water. Mark brought us 3 5 gallon kegs, Lyrion loaned us another. We learned that John doesn’t have the understanding of how to wash with two basins, so that was one more thing only Willow could do. Luckily, he’s really useful for carrying the 5 gallon containers around, and flushing the toilets with buckets.

photo-on-2016-09-06-at-20-09My last visit to Dr. Q on the 29th was mostly his answering my questions. It is wonderful to have a doctor who’ll do that. He explained why my hands and feet are cold- it’s the weight loss. He says to expect my feet to hurt because of the padding I’ve lost. I am also experiencing the neuropathy (pins and needles variety) that’s one of the Lyme symptoms. (I wonder if that’s associated with the Bell’s?) I weighed in at 245. I’ve been trying to eat nutrient dense foods for what I can eat, but last month I was 276, so that would account for how haggard I look now. You can see the couch behind my head, and that I still can’t smile on both sides. But yeah, you can see that the weight is coming off my face. My body still is huge, but I have to get down to 232 before I’m not “morbidly obese.” I am seriously going to have to do rebuilding muscle exercises when I get my energy back!

That will mostly catch us up after a month of lapse. I hope my energy level improves because doing nothing sucks!

“Water is life”- Lakota … and everyone else with a brain