How I got here MY diagnosis process

Frankly, it feels like I’ve done nothing for the past month. Even now my life seems to consist of getting up, getting dressed, taking pills (which also involves eating enough to avoid gastric calamities), napping, and getting back to bed- puntuated by medical visits.

This is not, in fact, true. The last week the well has run dry which brings its own set of problems, the kids each are dealing with his or her own challenges, the election cycle continues to spin along, which will certainly have far more impact on the world than my physical problems. and even I think about things I’ll do when I can figure out how to do so.

One of the key questions in Lyme disease is “When did you get it?”. When were you bitten by a tick? I didn’t have any “bullseye rash” (erythema migrans, which you can google and see lots of interesting but potentially gross pictures) and wasn’t aware of any tick bites, but we do have cats that go outside, so that’s one possible vector. We know pretty well when I started getting sick- it was in July.

It has been a HOT summer, and I’ve never done well with heat. We broke down and got Kat an air conditioner for her room, but the rest of us made do with fans. We went to the Great Northeastern War the second weekend of July, and that’s when I know I got sick. I was doing fine, if hot, on Tuesday, then Wednesday night I was up every hour going to the bathroom- a lot. By morning I was exhausted, dehydrated, and generally wiped out. Willow and Kat did the packing, and I dozed on the trip up rather than taking turns driving. Once we got there, they did almost all the work- and that continued all weekend. I did teach the classes I’d planned, perking up under the influence of the topics, but between classes, I’d come back to the tent, lie down on one of the cots and nap. Day time sleeping is unusual for me, and people started to worry. I figured once I’d caught up on my sleep and gotten re hydrated I’d be fine.

Then Saturday night I got the rigors that lasted two hours, and was scary as well as uncomfortable. The worst for me is that the girls seemed to be sleeping through it. Something scary was happening to me and no one noticed. Apparently this was not true, Willow was aware, but feeling no ability to help, was pretending she was asleep. I am pretty sure fear makes symptoms worse. When she got up and held me and added blankets, I felt a lot better. Two hours is a long time to shake, and I was worried about my teeth breaking.

As soon as we got home we made an appointment with Dr. Quirbach. He diagnosed a UTI Urinary Tract Infection, and I started a run of Cipromycin for that. We wrote down the list of symptoms we took to him that visit, and they include: the rigors, napping/ fatigue/ pervasive weakness, headaches, brainfog,  hypersensitivity to light, sound, sensation, taste, nausea and lack of appetite. It was at GNEW I found I could pretty much only eat melon and grapes and other soft fresh fruits, which continued most of the summer.

The next week I spent napping waiting for the antibiotics to do their thing, remembering the last time I took Cipro (it is a strong one, the one they use against Anthrax for goodness sake! Last time it took me a month to recover my energy). and hoping for a return of enough energy to get ready for Pennsic. I decided to only do one page hand-outs for my classes, not full booklets, and dealt with the first yeast infection I can remember having. I figured the Cipro was wiping out my energy, and pushed the pro-biotics. We got off to Pennsic pretty much on Willow’s efforts, sure that my energy would pick up as the anti-biotics got further in the past. This didn’t happen.

Pennsic_AerialWhile the magic of being excited about classes perked me up for them, I should perhaps have been suspicious that I was making decisions based on how far I had to walk. Other than for classes, I didn’t leave our booth area, and luckily, half the classes were in the pop up next to Cabochons. My “cause” this year was how much I didn’t like the way they were running the medical assistance carts. They used to send one to you if you needed one, drop you off, and come pick you up again when you needed a ride back. This year “to save milage” they just did a circuit like the buses, on the assumption that the three loops that “covered” the camp would get within a “block” of one of the routes, and they’d be picked up when they flagged the cart down. (The rant about this doesn’t belong here, but I have a lot of problems with that theory.) That said, I did manage to get rides to most of my classes.pennsic_L land map

There’s a wonderful story about how I slept through Pennsic 9. I caught the flu and did pretty much sleep through it. I’ve always said that if you’re going to miss Pennsic, that’s the way to do it. Ask me about Pennsic 45 and I will not remember much more. That is NOT the way to miss Pennsic. (missing it while being there.) That said, I shouldn’t complain, our friend John from Camp 3 Bears disappeard for 3 days and it turned out his cornea detached and had to be sewn back on, so in a town of over 10000, there are lots of maladies. I assume that the ratio of doctors/ nurses/ EMTs and others to patients hasn’t changed since the Chiurgeons existed- but now they are not allowed to do anything as a Guild, and the proffessional EMTs are only there to transport, so it’s no longer a good place to be if you get sick.

I figured that since I’d finished the Cipro July 22, by August 22nd I’d have my energy back. Sadly, I got more tired and more weak, rather than the reverse, and more sensitive. Thank goodness Willow had replaced all my size 10 panties with size 11* (I had weighed in at the doctors at 275), because the elastic pinching was maddening. Unfortunately even my favorite bras pulled so hard on my shoulders that by mid-war I convinced myself that it was authentic to go bra-less. I had to keep my hair up because a hair falling on my shoulders felt like steel wool. I expect I was not much fun to live with. I really don’t remember much about the event. Mostly I remembered that, especially as it cooled off in the evening, my back and shoulders hurt. I figure that the neck hurting came from my head always falling to the side not being held up vertically. At the time I figured that it was from a problem I had on the way down. My left eye started hurting- probably a small scratch, but I could feel it when I looked right or left. So I started turning my whole head right or left instead. A day or two later, my eye was fine, but my neck was really painful, then next day my shoulder was, then my upper back, until I was aching a lot. I tried acupressure, I tried massage, I tried OTC pain pills. I discovered that they didn’t start working for 30-45 minutes, and stopped working after about 2 hours. Meanwhile they all seem to have dire warnings that if you take them more than every 6 or 8 hours, you will kill your liver. Pretty freaking useless in my opinion.

Admittedly, I haven’t had to deal with much pain in my life. My headaches tend to be intense, blinding pains that are gone in five seconds. I never saw the logic in headache commercials where they talk about the aspirin starting to work in 15 or 20 minutes, because I hadn’t had a headache that lasted that long until I was in my forties. (You may be jealous now, most people are.) So I was pretty whiny; not only did I hurt, but the world wasn’t right. If you take a pill, it’s supposed to make the pain go away. I tried everything anyone could find for me: Aleve, Motrin, Advil, Midol, Excedrin, Tylonol plus…. They might work one or two times, but stopped working pretty quickly. I’d take them and start waiting for it to work- timing it, and then it wouldn’t.

What I found did work was hot showers. In past years I’ve learned to go to the bathhouse when I woke up to pee in the middle of the night because there’d be plenty of hot water. This year they have a new system and there was always plenty of hot water, and when it ran over my shoulders and back, the muscles would loosen up, and if I could get straight back to bed, I could go to sleep. Unfortunately, as the war went on, I would head back again when the muscles started hurting again more and more often- sometimes 5-8 times a night, to get relief. At least with no fear of liver damage. I guess it was related to the temperature, because I don’t remember needing it in the day. Of course the temperature was reading between 90º and 95º most days which was pretty hard to take itself.

Friends were concerned, so was I, and we called Dr. Q and made an appointment to see him Monday, when we got back. He tapped my back and the kidney area was sensitive, so he figured the UTI had come back, and gave me another antibiotic (not Cipro this time), and we set to wait for recovery. Also, hydrocordone and Naproxin for pain- they had to be balanced against each other. I still had no idea what was wrong. There was no post-Pennsic cleaning of the pre-Pennsic prep mess, but the girls were getting ready for the con at the end of the week: Pop Cult Anime Con. Quick get in appointments with shrinks and other doctors!

Wednesday morning I got a phone call from someone I still owe money from the hernia operation 10 years ago. I was still in bed, no contacts (semi-blind), groggy, and still seriously weak. When I reached for my purse, hanging on the door, I tripped and fell, dropping the phone, and falling in accumulated things that needed putting away. Too weak to get up, and with nothing to grab or push against, I yelled for the kids- alternating with yelling for the person on the phone not to call an ambulance- which seems like the natural response when you hear something like that. John and Kat turned up and got me on my pins, we found the phone and the lady said she’d call back. Turns out Willow was at the vet with the cat, who’d managed to hang herself in a tree losing the use of her back legs. (Pyewacket was left overnight for observation, IV fluids and an X Ray, and came home, limping, but OK.) Roughly the same thing happened to me.

We got to the ER around noon, and started the admission process. Kat had an appointment at 2- too bad we didn’t head for Peterboro instead of Nashua. (they rescheduled). We fought with them about the way their admission papers require that you say you have a form they won’t give you until after you’re admitted, but they won’t admit you if you don’t sign. Just give me the paper it says you’ve given me and I’ll sign it! They won’t do it that way. So Frustrating! Eventually we wrote notes on it, and got in. Did I want to be admitted or not? I figured that if I stayed in the hospital, the girls would be confident that I was being cared for and would worry less while they were away, so I figured- let’s try it and figure out a way to pay for it after I felt better. (Money is a different topic)

My white count was too high, my salts too low. I am sure that the IVs helped, and they gave me a dose of morphine that worked fine, and then one of Dilotid that worked, and I fell asleep for 20 minutes. I got scans- Willow wrote them down. They suggested admission for observation. Saint Joseph’s Hospital was in the same network as Dr. Q, so I figured if I went there, that would facilitate communication between him and them. So I became a white female, 64, morbidly obese, with non-specific pain, and falling risk.

Falling risk seemed the only thing that they gave a shit about. I told them that I could get pain relief with a shower, but they couldn’t possibly have anyone watch me while I showered. Heck they didn’t even want me to go to the toilet without someone walking me there- they’d prefer if I used the bedside commode. Pain relief? Back to non-functional OTCs. The nurses liked floxel (Cyclobenzapore) because you could “tuck it in” between scheduled doses of the more dangerous drugs. But mostly I lay there and moaned. The food wasn’t bad, but I wasn’t getting what I’d call CARE. The only thing that would shoot down the pain was being actively denied to me, so I decided to get out. The IVs had taken care of the dehydration, and I guess my white count improved. I proved to them that I could walk and do stairs, and they let me go. Both Mark and Steve came by, and took me to dinner, and Steve drove me home. I was worried about the well, but decided to take the risk and get the pain relief.  John provided better care than the nurses.

Sunday around noon he brought me a sandwich Photo on 2016-08-21 at 17.45and I found it a bit hard to eat. My tongue felt a bit swollen. I was talking to Liz and Megan and they were asking about stroke symptoms. This is not something you mess with. Then at about 5:45 I caught a glimpse of myself in the reflection on the computer screen. Pulled up Photobooth and took this picture of me smiling. Definitely crooked! On my way to the ER again. I called Mark and he would come get me. I mentioned it to Megan and she suggested that an ambulance would be better- but kept talking until Mark got there, so that was a moot point. I’d let the girls know, and by this time they were on their way home, and met us there.

This visit was from about 7 to 11. They ruled out a stroke, and diagnosed Bell’s Palsy. Kat had Bells Palsy a few years ago. We know how to deal with that! Yay! Apparently in the past few years it has become associated with Lyme disease so they sent off tests for that, gave me drugs for Bells, and sent me home. Good, they wouldn’t let me drink anything (although they put in an IV they never used) although my mouth was really dry, wouldn’t let me use the heating pads for the pain, and were generally pretty callus. It was also a bitch to find a 24 pharmacy in Nashua. Doxycycline, Prednizone for the Palsy. Pain pills, but I’ve given up on them. Why take the risks for no benefit?

In the morning I called Dr. Q and we stopped the UTI meds. I saw him again on Tuesday and he was wonderfully supportive, answered all my questions without rushing. I was particularly confused by the “Don’t eat Calcium with doxycycline” but it’s OK two hours before or after. He says that food is out of the stomach and into the bloodstream after two hours, and the doxy is in the blood stream two hours after being taken orally, and it seems they only bond in the stomach. Given the number of times I’ve “blown chunks” more than two hours after I’ve eaten, this seems odd to me, but apparently food staying in the stomach is not normal. We talked about the test for Lyme- he was sending me for one, but then I told him the hospital had done, hadn’t they sent those records to him? It seems they share records, but usually only a week or so later. Sigh. He called me the next day and said that their results had been sent to the CDC for confirmation.

we got the call to go get new meds for Lyme, and Dr. Q said to discontinue the steroids and other meds. So I’m on a single medication and that for (at this point) a month. We’ll see. Hope it works, if, as we suspect, the Lyme started in July, apparently Cipro doesn’t touch it. I am also reassured that even had we tested back then, there wouldn’t have been anything useful. All the test shows is anti-bodies. Have you been exposed? That will show up for the rest of my life. We need better tests. The first few days I had the “expected” diahrria, but seem to have got it under control now- or maybe it was just leftover prednazone,

As soon as I got the diagnosis of Bells I made an appointment with a local acupuncturist because even the “normal” doctors finally recognize that acupunture is good for some ailments and Bells is one of them. At this point I see no improvement but am happy that I can mostly drink and swallow without food falling out the right side, and I haven’t needed to tape my eye shut to protect it as Kat did.

I haven’t had a lot of pain since the diagnosis, which is wonderful. Especially as the well has run dry. Life doesn’t stop just because one gets sick. There are other problems to deal with, and sometimes you can do something, sometimes you can’t.

Progress is certainly not linear, even during one day. Sometimes I feel better, sometimes I feel like a wet noodle. I am still dependent. There’s a huge frustration in lying on the couch listening to the phone ring and no one else is getting it, and I’m kicking like a beetle on it’s back TRYING to sit up to try to get it, but can’t, when earlier I had managed to bend and pull myself up.

The toilet is always scary- will I be able to pull myself up or not? One must go, especially with occasional bits of diarrhia. Will my legs go to sleep and become weaker if I’ve stayed there too long? Still wants to make sure that it’s flatulence not something messier coming. We have grab bars in the downstairs- but not the upstairs. So far, so good, but since I often find myself weaker than I had been previously, it’s concerning. At my worst I couldn’t pick up two pounds. (I started testing myself when I couldn’t pick up a half full gallon of milk.) I am very concerned with how to rebuild my muscles when this is over.

And I have now sat up longer than I have since before the war and am tired. So that should be enough.

 

*if you can’t deal with references to underwear, poo, and other gross or personal details, give it up right now