Come join the party.
This journey gets stranger every day.
I don’t normally have headaches. But I’ve had a three-day migraine, followed by 3 days with no headache, then another three-day migraine, I’m now on day 4 headache free. I hope I’m done.
Four times this week, and once last, I also woke with a new strangeness. I was wide awake, could open my eyes and look at the clock and see things in the room, but couldn’t move a muscle. This strange paralysis lasted only a minute or two, but was very disconcerting.
Add this to the recent loss of my sense of smell, and the tremors I’ve had in my arms and legs for years and years, and the sleep disturbance I’ve had for longer than I can remember, and the migraine complete with auras, and the small white matter lesions that showed in my brain MRI, and the left foot drop (that causes me to trip) but happens only sporadically, and not often enough for the PT to see it happen – even with an hour of me walking back and forth. And it all adds up to something that looks like my immune system, not content to attack my joints, has invited my nervous system to the party.
Last winter, I saw my primary care doc and the ENT for the smell tests and MRI. The ENT doc said it wasn’t caused by something he could treat (structural, infection), and that it was most likely nerve related, because it was affecting both my smell and taste. We looked for other possible causes and did tests that ruled out Lupus. Since there was nothing else that we could definitively test for, I then shrugged my shoulders and decided I’d hope for the best – that I was in the 85% that never figure out what causes their sense of smell to diminish.
I’m still hoping, but maybe a little less optimistic. The symptoms are pointing more and more towards early PD, which is just another fancy way to say that my immune system is attacking my nervous system. Sigh.
Time to I shift my focus, and look at what I can enjoy.
My first rose of the season opened today. My daughter says it smells divine.
After a moment of sad regret, I realized that mourning for what is lost robs me of time I could spend enjoying what remains.
So, I will focus on drinking its beauty with my eyes and basking in the pleasure on my daughter’s face as she inhaled the scent, and be grateful for the present.
A walk in the woods
Elimination diet going well. Cheese seems fine. One cup of rice and I gained 2 pounds between dinner and 8 am this morning. So, rice goes on the don’t eat list for the next 6 months. I feel fine, but 2 pounds, really! So, for now, it’s back to meat, veggies and fruit until I lose those two pounds and a couple more. Then I’ll test butter and see what happens with that. I’m down to one cup of coffee a day. Thought I could kick it this weekend, but have had a headache 6 out of the past 9 days, so will hang on to the coffee for another week.
Next weekend, I’m thinking I’ll take my sleeping bag with me, and sleep in the woods near the creek.Here comes Peter Cotton Tail
It’s not yet Easter, but if my experiment is successful, I’m going to be dying eggs soon!
A dozen eggs in 24 hours, and no adverse reactions. Have to wait two days, as sometimes there can be a delayed reaction, everybody is different. The eggs were yummy – local, organic, free range, with bright yellow yolks – like the eggs from my childhood. Why did we ever start this nightmare of factory farming????
Joints were happy all day. Everybody’s back to a .5 – 1. Took a month for my feet to forgive me for the 36 mile hike. But now that they have, it was worth it. Scary at the time. I think that’s the worst part of RA – not knowing what will happen next. How long will it take to heal? Will it heal?
Edema is receding, again. When I measured on Sunday, I was almost back to January’s measurements. There’s still lumps and globs in my upper thighs. Still little pillows on the top of my wrists, the left axillary is still swollen, only it is a shadow of its former self. I wore a bra one day last week, and it caused the axillary to flare and become more sore and swollen. That was the end of that experiment. I burned my bras in college, and seldom wore one after that, always choosing clothes that didn’t require one. Then six years ago, when I rejoined corporate America, I felt the need to dress the part, and went back to bras and suits. My lymph therapist thinks that the bra was part of what caused the lymph nodes under my arm to become so inflamed, or at least to make it worse, once it started.
The three-day migraine is gone. It was an interesting experience I hope to never repeat. Started with a lovely silver aura, jagged arc of flashing light, which lasted about a half hour. I’d never experienced that before, and since I’ve had a detached retina in the same eye that was seeing the aura, it was a bit of a scare.
The whole experience did give me some new insight into how difficult the past 18 months have been for DD1. She has not had a day without headache in all that time. I truly admire her. Don’t know how she continues on. She has bad days and better days, but never a pain-free day. In general, she is better than 6 months ago, and lots lots better than 18 months ago, so she is making progress. We have a new PT for her, at the spinal clinic. They’ve done an MRI to rule out pinched nerves and whatever other bad things they were looking for. They, too, think it is all muscular, and have a whole new bag of tricks to help her. In the mean time, I’ve found a new neurologist, who I’ll keep in my pocket for now, if this doesn’t work, and we need to take a different approach. My heart aches for her. When she was a wee one, her nickname was Sunshine; people basked in her happy nature. Now she shines in a different way, in her ability to survive.
Elimination Diet Begins
Difficult to believe it’s been almost a month since I posted.
I returned from my hike to 3 weeks of constantly changing weather. Cold fronts, heat waves, summer, winter, rain, rain, rain. 80 one day, 50 the next. Strange weather, and not good for RA, which played its normal games, and reacted badly to the weather. When you add in the challenge of my recent hike, it has taken almost the entire month to get back to my normal level of happy joints.
At one point, when I was feeling discouraged over the whole thing. I sat down and re-read my entire journal and blog for the past year. I was surprised at just how badly I was doing this time a year ago, how much improvement I saw over the course of the year, and how much milder the current roller coaster ride was compared to the one last spring.
I haven’t kept my daily journal or logged as much since fall. But reading back over the last year, I can see the value in having a daily record of how I feel, what I’m eating, what the weather is doing, what I’m doing for exercise and therapy. So, now it’s time to log and blog again.
Just before my trip, I started working with a nutritionist. I’m now six weeks into an elimination diet. I am eating only meat, vegetables, fruit, coffee w/ sugar. That’s all. I’ve lost 7 pounds!
Tomorrow, I’m adding back eggs. I’m supposed to eat lots of eggs – 1/2 a dozen or more over the course of the day (unless I have an immediate reaction). If nothing bad happens as a result of the eggs, I go back to meat/veggies/fruit for a couple of days and then try another food. This project will keep me entertained for the rest of the spring, at least!
Re-Entry
I’ve been back a week now.
I had a marvelous time, and will blog about it soon.
Re-entry was difficult. I left my hiking partner on the trail in Georgia last Saturday, and drove 7 hours back home to NC. Traffic was heavy and it was a bizarre way to re-enter society, after an entire week hiking and sleeping in the woods. There were more people in Starbucks, where I stopped for a coffee, than we saw the entire time in the woods!
I had been gone 11 days total, so had 7 work days of email and message to catch up. Amazing how work doesn’t go away when I’m on vacation, I just have to work longer hours when I get back. Same at home, longer hours to play catch up. Now I need a vacation to recover from my vacation!
My joints behaved themselves while I was gone. For the most part, my body did well hiking the 35 miles, in 7 days, carrying a 30 pound pack. My feet were swollen by the end of the week and I have more stiffness in feet and ankles this week, but all in all, probably not much worse than anyone else who didn’t have RA would be experiencing. Certainly not any worse than they have been at other times the past two years, with nothing to blame it on. So I am content that I did no lasting harm with my crazy adventure.
This was my first long backpacking trip. As I expected, I loved it. If I could, I would leave tomorrow and hike the entire trail, and then go on hiking for the rest of my life. There is something deep in my soul that longs for the woods, the peace and quiet, the solitude and beauty of nature.
So now, my path is to see how much of the wonder of that week I can bring into my daily life. Weave the wonder of the woods into the very fabric of my daily existence.
Home again
Today dawned misty and cold and matched my mood. I felt sad to leave my friend behind. Wished I could be hiking off into the wilderness with him.
We got up early, drove back to Neel Gap, had a quick breakfast together and then I watched him hike until he was out of sight. One last wave and I was on my own.
I stopped into the outfitters to use the rest room before I headed out. I had a 7 hour drive home. I still ached and hurt, but I’d slept well for two nights, so I was past the exhaustion and merely really tired.
Spending 7 hours driving on the interstate after spending 7 days hiking in the woods, was bizarre beyond describing.
The trip was an amazing experience. I realized just how much I love being in nature, how much I want to incorporate more outdoor time into my life. I spent the entire drive thinking about ways to change my life, so I could be outdoors more and take more hikes in the woods.
I also spent a lot of time thinking about how, if I want to hike and backpack, I have to figure out how to do it without bringing on the exhaustion and pain of an RA flare.
Zero Days
The shuttle brought us here, to the Hiker Hostel, last night. It is a beautiful new bed and breakfast, designed for hikers and bicyclists. It is like a normal bed and breakfast, except with bunk beds and extra hiker amenities thrown in – laundry room, a hiker kitchen, hiker supply closet and of course the shuttle service.
We had hot showers, visited with the other guests, more hot showers and turned in before sunset.
I love the contrast of our packs and the silver tray in the corner!
We slept in late and woke to a beautiful day. Today was Oddbird’s day to do his town chores – what thru hikers call a zero day (no miles).
He washed his clothes before we left the hostel. Then we headed out to town.
We wandered around Suches, GA for most of the day, doing errands. Amazing how crazy a Wal-Mart can feel after being in the woods for a week. We had many good laughs as we searched for batteries, Bandaids, and other little amenities.
We checked into a hotel for the night, and Oddbird did a sort on all his gear and food. Made a pile of stuff to send home, and then we headed for the UPS store. With that errand done, it was back to the hotel for the final shake down and pack reorganization, updating of the on-line trail journal, a few tweets, and we called it a day.
I played observer in most of this. My day involved tagging along, and trying not to give too much advice!
In spite of a good night’s sleep and multiple hot showers and handfuls of Advil, I was still exhausted and hurting, and this entire day is a blur. I do know, at one point, Oddbird said it was fun to be in Walmart with me when I was exhausted, he saw a whole new side of me – apparently, I’m really funny when I’m too tired to function!
In bed before the sun set, again.
Neel Gap to Swaim Gap to Neel Gap
There and back again…
The day got off to a slow start. We slept in, visited with the other hikers and then had a “pack shakedown” at Mountain Crossing outfitter. This is an AT thru hiker tradition. The staff there will sort through all you gear, and give you advice on what they think you need to add or subtract or change to help make your hike successful. They have years of experience as long distance hikers, and all have done several thru hikes on the AT.
It’s also a bit of a game among the thru hikers. Bragging rights to how much weight they did or didn’t send home, and what they kept in spite of the advice.
Oddbird had done months of research, and I had added some of my own. So we did a good job and only ended up with a small pile of things they recommended we jettison.
After the shakedown, we set off for a slack pack. Oddbird took some lunch stuff and our water in my lighter pack, and we hiked round trip to Swain Gap and back, about 4 miles.
The sun was shining and hot at the top of Levelland Mountain, so we stopped there to eat lunch and play in the sunshine for a while. I even had a nap. It was a beautiful day, and wonderful hiking.
It was also the day I knew I had overdone things. Even without a pack, I needed all my strength and determination to hike. My feet were swollen and the arches and balls of my feet hurt with every step. I was exhausted. But I put on a brave face. Oddbird knew I was tired, but not the extent of my aches or my exhaustion.
We were off the trail in time to shop at the outfitter, and then meet up with the shuttle driver for the ride back to my car. 
Jarrad Gap to Neel Gap
The day dawned bright and beautiful. Neel gap was a mere 5 miles away, and we were a day ahead of schedule. Time for a new plan. We looked at the map and decided to hike to Blood Mountain Shelter. Were had been told it was a difficult climb, much more difficult that Sassafras or Big Cedar Mountains. We knew there was a bad storm coming in around 6, with possible high winds and tornadoes, along with rain and lightning. 
The climb was rocky, and my toes were soon complaining. They don’t like the VFF boots with the heavier sole as much as the thinner, lighter VFF shoes. Sat on the rock steps to change shoes, and you can see from my smile that my feet are much happier!
Blood Mountain proved to be a much easier climb that we were led to believe. We summited by noon and found the shelter to be a dismal, dreary, windy stone building on top of the mountain. The view was magnificent, but not a place we wanted to spend the night.
As we were debating what to do, another hiker arrived. Biscuit had done a thru hike a couple of years back, and was taking 5 months to hike as much as she could before she started law school in the fall. She said the way down was easier that the climb up, and that the hostel would be a fun place to spend a rainy, windy night.
After chatting with Biscuit and some other local hikers, we started down the mountain. It was a fun, but steep, climb down.
Over the past few days I had started naming the rocks, and all of them were called by name in the afternoon hike out to the hostel.
I met LPERs (pronounced leaper) - little pig eating rocks
and BTERS (biters) – big toe eating rocks
and MT CRS (mighty curs) – middle toe crushing rocks
and, last but not least, PGRRS (piggers) – pole grabbing roots and rocks.
The PGRRS were the most dangerous, as they threw me off-balance, the LPRS were the tricksters, jumping up out of nowhere to eat my poor little toes, the BTERS were few and far between, but powerful none the less, and the MT CRS were the most cruel. I met several of each on the way down the trail that day!
The hostel at Mountain Crossing is a legend in the AT hiker community. Run for the past 27 years by a crusty old character named Pirate, who cooks dinner and breakfast every day for his guests. The dorm sleeps 16 in bunks lining the walls, the water is hot and endless, there’s laundry facilities, and several resident cats who will curl up in your lap or your bed.
We rolled in early, claimed our bunks & towels, waited our turn for the showers and then enjoyed our dinner. After dinner there was a rousing game of “no rules” team scrabble, with beer for all the participants. I opted for a foot soak; nothing quite so surreal and “flash back to the 60′s” as to sit in a hostel, soaking your feet in a red plastic pail, playing scrabble with a dozen strangers turned instant friends. It was the perfect place to wait out the coming storm.
Big Cedar Mountain to Jarrad Gap
Up to another beautiful day. Cold and windy. Oddbird was up and making coffee in time to see the sunrise. I was still nestled in my warm bag. He brought me a snap of it on his phone, but even that couldn’t entice me out. I was beginning to feel the effects of all this hiking and wanted more sleep. He finally got me going by bringing my coffee into the tent! It sure is nice to have such a thoughtful hiking partner.
Today we planned to go 6 miles to Woods Hole Shelter. The first stretch was down hill all the way, then a gradual up and down for the afternoon. Just like at home, mornings are the most difficult. Today, just like the tin-man, I could have used an oil can. It takes awhile for my muscles and joints to accept the idea that I’m going to hike, about an hour into the morning though, things started behaving and the hiking was much easier.
The photo doesn’t capture the beauty of this tree. The entire trunk was warty, from the very bottom to its tippy top. I loved it for its difference, admired it for its strength, for persevering in the face of its disease. Our natural propensity is to survive, in the face of all obstacles.
The morning hike went quickly, all down hill!. We stopped at Lance Creek to cool our feet in the water and eat some lunch. Oddbird took his shoes and socks off and tried the stream for the first time. I love wading in the winter streams. 
The cold winter water takes your breath away at first, but then, like an ice pack, it takes the aches and little pains away, and your feet thank you for the spa treatment.
This photo is from day two, at Long Creek Falls. Oddbird just sent it to me. You can see how good hiking makes me feel!
After lunch, we consulted our maps. We were a day ahead of schedule. My body was behaving well, so far. We had planned to go 6 miles to Woods Hole Shelter, but the guide-book told us there was a side trail to a state campground where we could get a shower. Since the day was young, we toyed with the idea of a side trip to the hot shower. I was dreaming of a hot shower as I hiked. Like a carrot on a stick, this idea pulled me along the trail.
After lunch, we met Hawkeye at the crossroads. He was also thinking of the campground, but when we told him the shelter was only another 1.4 miles, he opted for the shelter. He was hoping to catch up with Josh and have some company in the shelter. We ate some snacks and opted for the side trail. Our thought was that we could get to the camp ground, take showers and then hike out to the shelter, and still get in before dark.
The side trail turned out to be one of the most beautiful of all the hikes. It wandered a mile downhill, beside a gurgling creek. It was well blazed, fairly well maintained and wound through the green rhododendrons. What move could you ask of a hike!
Arrived at the campground to find everything locked up tight. We were too early in the season. As we ate some more snacks – hiking requires lots of snacks – Josh showed up. He had read that there was a diner near the campground, and he was almost out of food. We consulted our book to discover the diner was only opened on the weekends, and probably only in season, too. Josh was sad and hungry as he contemplated his next move.
It was getting colder, daylight would soon be fading, and we faced the choice of stealth camping in the closed campground or hiking the mile uphill out of the creek valley and another 1.4 miles uphill to the shelter. Knowing that would be a real challenge for me, I used all my feminine wiles to convince the two that we should camp right there!
We quickly set up our tents, next to the stream. I got our pads blown up and bags rolled out while Oddbird started cooking. We shared some home-made trail food with the hungry Josh and had a wonderful time getting to know each other. We were snug in our beds and fast asleep before the sun set. If the rangers ever came around to check the closed campground, they didn’t bother us!
Another wonderful night of sleeping the clock around to the sweet, sweet sound of the gurgling creek.
