update

I continue to experience significant pain. I'm not sure I'm getting better. It's difficult to say. I only take one anti-inflammatory per day now because they make me feel sick to my stomach. So, my stomach definitely feels better. But I do hurt more. I continue to exercise regularly, though the last two days I haven't been able to. I see another rheumatologist on Thursday. He is supposed to be really good. I'm hoping he can shed some light on what is going on.

My attitude has been significantly better the last four or five days. I know this isn't the end of the world, and I really enjoyed the sunny weather and playing my mandolin this weekend. It is a bit difficult for me to be upbeat at the moment because my whole body hurts. But I expect I'll have more good days, and then more bad days, and then more good days.

On the other hand it is mildly terrifying not knowing what is happening with my body. I lie in bed and just look at my legs. They are so small now--I've lost 8 or 9 pounds and am not gaining it back. I look at my body. I am still strong from exercising, but I can barely walk some days. It is so strange.

I read about the alleged disease I have, and I think, "OK, I can really deal with this if I change my diet, exercise regularly, do what the doctors say." And then I hurt really badly for a few days. It really does put life in a new perspective for me. Wow. Luckily I"m not depressed. I feel like, despite how sucky this is, that this is a positive thing. I feel as if I'm living in the present moment like I never have before in my life. The pain brings me back again and again. I can't make plans. I don't even know how I will feel tomorrow. So, I am here now.

Please pass the healthcare legislation & thoughts about athritis

Please pass the healthcare legislation. I never thought it would be so important to me. But, if they don't pass it, I'm looking at not have health coverage for the arthritis I have. It will be a pre-existing injury by the time I get new health insurance when my current contract job is finished end of November.

A bit on arthritis...

For the first time in my life I'm actually looking at old age, sickness and death in the face. I have been injured often from my climbing endeavors, but always in the back of my mind I knew those injuries would heal. Now, I have a disease that will not heal or go away. According to three doctors, I have Ankylosing Spondylitis. Ankylosing spondylitis (AS) refers to inflammation of the joints in the spine. AS is also known as rheumatoid spondylitis or Marie-Strümpell disease (among other names). I have a gene that indicates this, plus I have many symptoms that indicate this. I have one more appointment with a rheumatologist next week, but it seems likely that he will make the same diagnosis.

The experience has already significantly changed my life. I can't say I have been happy about it. It's devastating. It is difficult and often incredibly painful to walk and sometimes to just sit (like now as I sit in my bed writing this). It mostly manifests in my ankles and my right hip, but if I push it too hard, it seriously affects my back and neck. I have been pretty depressed and anxious the last 3 weeks.

On the other hand, I have a new and fresh perspective on reality. I don't actually care if I can't go rock climbing. I was overjoyed to be able to swim two days ago. I swam for 15 minutes and had to stop, but I will work my way up to swimming for longer periods of time. I can also stretch. Vigorous yoga is out of the question, but I can do triangle pose, downward dog (sort of), and various other invigorating poses. Plus, I can lift weights as long as I don't do anything that might stress my ankles. I'm not really even thinking about climbing right now. My good days are days when I have minimal pain in my ankles. And you wouldn't believe how appreciative I am of those days. Walking is a joy. Walking is a privilege. Thank Budda, God, Allah, and anyone else I can thank--I can walk!

As well, I view old people or disabled people differently. When I see old people walking with canes, ever so slowly, I can honestly say, "I understand." When I see someone who clearly has difficult walking because of some disability, I actually have a glimpse of what their lives are like. And I laugh at myself because those same old and disabled people are passing me on the street because I'm so slow.

Spiritually, like I said, I'm perhaps getting a hard and clear view of sickness, old age, and death. I have no choice in this matter. No matter how much I work out or will away this disease, it will be with me the rest of my life. And no matter how alive I feel, I could be dead tomorrow. And even if I'm not, I likely will be in pain. So, I'm crying right now because it is so painful to think about. I am tired, I hurt, and I am incredibly sad. But on the other hand, I have had this weight lift off my shoulders with this knowledge. I have no choice in this matter. I will become old, and I will die. So, perhaps I should just lighten up a little bit and appreciate things more. Hear the birds more, be present with myself more often, love and trust myself more deeply, smile at and love other people more easily, acknowledge and alleviate other peoples' pain as much as possible. When I meditate on those things, which I do every day, this doesn't seem so bad. Being alive is really a wonderful thing. So I hurt, but it's springtime, and the birds in the courtyard sound so pretty :)

I have a ways to go before I'm at peace with this disease and with myself. Letting go of my clinging to so many things--climbing, my health, my pride, how I want things to be, my ego, etc--is harder to do than dealing with arthritis. But, in the end, it will lead to me being a kinder, gentler human being. I guess at this point, denial is out of the question. I'm welcoming this new stage in my life with compassion and love.

Wish me some luck.

Jonathon Stalls to walk across America to raise funds for micro-finance org, KIVA

I love my job when I get to write articles like this. (By the way, I'm healing well :)
by Lizzy Scully

Remember Forest Gump, long hair strewn about as he ran and ran across America. When asked why, he responded: “When I had to go, you know, I went.” Recent Metropolitan State College of Denver Alumnus Jonathon Stalls (Independent study ’09) is going on foot across America this year, too—walking from the East to the West coast, in fact. But he’s not doing it just ‘cuz. Stalls is on a mission. He’s raising funds for the nonprofit, microfinance organization, KIVA. Plus, it’s something he just had to do.

“I sat with myself on my birthday prior to graduating, and I said to myself: ‘this is something I would love to do. I don’t know when, but I’m going to do this.’” Now, just six months later he’s on his way. He left Monday, March 1, and plans to travel well over 5,000 miles. He’s using the southern portion of the American Discovery Trail (ADT) as “a tool in carving a route for this trip.” He plans to reach the heart of the Rocky Mountains by July and so will have to take some shortcuts. His final destination is California.

The seed for this trip, he said, was planted on a visit to Europe. “I interacted with all kinds of on-foot travelers in hostels. The freedom and flexibility of their mobility and travel was this new thing for me. I recognized I was very jealous of a life like that.” Then he came back to the States and “stumbled” across Peter Jenkins’ book, “A Walk Across America,” and he met a guy in a coffee shop late one night who further influenced him.

“He sat next to me and started talking about how he was walking across the country and was on the last leg,” recalled Stalls. “The stories that came out of his mouth paralyzed me.” Soon after that night, Stalls took an extended trip to Honduras, where he “bounced around on chicken busses.” That cemented things for him, and he began to check out weather patterns and routes across the United States.

However, the trip planning couldn’t complete until he figured out one more thing. He wanted to give back somehow. While taking a social entrepreneurship class at Metro State, he learned about the organization KIVA, which offered microfinance as a solution to poverty.

“I went online, researched KIVA and just fell in love with how they organized people to get involved in microfinance,” Stalls explained. He also liked how they “met our growing online social capacity.” KIVA utilizes social media platforms—Facebook, MySpace, and Twitter—to cultivate an online community that syncs with their interests. Stalls is taking a Blackberry with him so that he can do regular updates on the walks, the people he meets, and anything else he’s thinking about. Though he’s only been walking less than a week, his social media efforts are already paying off. He has already raised three-quarters of the $12,000 that he needs to make the trip happen, and he has more than 500 Facebook friends. He hopes this translates to real-world interactions with people.

He is looking for people to host him along the way, to walk with him on highways or through the mountains, and for whom he can do presentations and facilitate inspirational talks about microfinance.

“Join me on this trip,” he says. “Put on a pack and take in your environment. Slow down a bit. I’m really looking forward to meeting and connecting with people.”

For more information, please visit Stalls’ website. As well, the Metro State Office of Alumni Relations will regularly keep track of Jonathon in our “Where’s Jonathon” updates. And we are spending a day walking with him in the Colorado mountains as he passes through. We encourage other alumni and students to join us on this journey. Please contact Brian Ferguson at fergusob @ mscd.edu if you are a student or alumnus who wants to walk with KIVA.

Crazy story about the most hardcore person I've ever read about in my life--Jan Baalsrud

Gawd, I feel like such a whiner!
-LS

There must be many reasons for Norway’s excellence, but some of them are probably embedded in the story of Jan Baalsrud.

In 1943, Baalsrud was a young instrument maker who was asked to sneak back into Norway to help the anti-Nazi resistance.

His mission, described in the book “We Die Alone” by David Howarth, was betrayed. His boat was shelled by German troops. Baalsrud dove into the ice-covered waters and swam, with bullets flying around him, toward an island off the Norwegian coast. The rest of his party was killed on the spot, or captured and eventually executed, but Baalsrud made it to the beach and started climbing an icy mountain. He was chased by Nazis, and he killed one officer.

He was hunted by about 50 Germans and left a trail in the deep snow. He’d lost one boot and sock, and he was bleeding from where his big toe had been shot off. He scrambled across the island and swam successively across the icy sound to two other islands. On the second, he lay dying of cold and exhaustion on the beach.

Two girls found and led him to their home. And this is the core of the story. During the next months, dozens of Norwegians helped Baalsrud get across to Sweden. Flouting any sense of rational cost-benefit analysis, families and whole villages risked their lives to help one gravely ill man, who happened to drop into their midst.

Baalsrud was clothed and fed and rowed to another island. He showed up at other houses and was taken in. He began walking across the mountain ranges on that island in the general direction of the mainland, hikes of 24, 13 and 28 hours without break.

A 72-year-old man rowed him the final 10 miles to the mainland, past German positions, and gave him skis. Up in the mountains, he skied through severe winter storms. One night, he started an avalanche. He fell at least 300 feet, smashed his skis and suffered a severe concussion. His body was buried in snow, but his head was sticking out. He lost sense of time and self-possession. He was blind, the snow having scorched the retinas of his eyes.

He wandered aimlessly for four days, plagued by hallucinations. At one point he thought he had found a trail, but he was only following his own footsteps in a small circle.

Finally, he stumbled upon a cottage. A man named Marius Gronvold took him in. He treated Baalsrud’s frostbite and hid him in a remote shed across a lake to recover.

He was alone for a week (a storm made it impossible for anyone to reach him). Gangrene invaded his legs. He stabbed them to drain the pus and blood. His eyesight recovered, but the pain was excruciating and he was starving.

Baalsrud could no longer walk, so Gronvold and friends built a sled. They carried the sled and him up a 3,000-foot mountain in the middle of a winter storm and across a frozen plateau to where another party was supposed to meet them. The other men weren’t there, and Gronvold was compelled to leave Baalsrud in a hole in the ice under a boulder.

The other party missed the rendezvous because of a blizzard, and by the time they got there, days later, the tracks were covered and they could find no sign of him. A week later, Gronvold went up to retrieve Baalsrud’s body and was astonished to find him barely alive. Baalsrud spent the next 20 days in a sleeping bag immobilized in the snow, sporadically supplied by Gronvold and others.

Over the next weeks, groups of men tried to drag him to Sweden but were driven back, and they had to shelter him again in holes in the ice. Baalsrud cut off his remaining toes with a penknife to save his feet. Tired of risking more Norwegian lives, he also attempted suicide.

Finally, he was awoken by the sound of snorting reindeer. A group of Laps had arrived, and under German fire, they dragged him to Sweden.

This astonishing story could only take place in a country where people are skilled on skis and in winter conditions. But there also is an interesting form of social capital on display. It’s a mixture of softness and hardness. Baalsrud was kept alive thanks to a serial outpouring of love and nurturing. At the same time, he and his rescuers displayed an unbelievable level of hardheaded toughness and resilience. That’s a cultural cocktail bound to produce achievement in many spheres.

The worst has passed

Today the pain in my ankles has diminished significantly. I won't be needing any painkillers. I still can't walk well as there is still joint pain and quite a bit of swelling. They also look ugly--cankles at their worst. I am thrilled that I can walk. I have a significantly deeper understanding of what it is like for people with arthritis and/or old people. It has also renewed my sense that I need to eat better and take much better care of myself. I aspire to live a long life without significant pain. It truly sucks lemons.

Alinia, aka nitazoxanide

I read through the potential side effects of Alinia, and I thought I'd offer a real-life perspective of how it felt to be on a 10-day regiment of the drug. It was nasty. Here goes:

I have a hard time believing Alinia is "well tolerated" as some doctors say. It sure sucked lemons for me. I'm not sure how much worse it could have gotten--I lost weight from diarrhea (after every meal + some), I got severely depressed with suicidal thoughts for a few days (I don't recommend this drug if you are depressed), my eyes and nails started turning yellow by day 8 (jaundice), I was exhausted and in a bad mood (normally I'm pretty cheery and positive), I had no threshold for stress, and I had terrible cramps and stomach pain. It was really awful.

It appears that it actually got rid of the protozoa parasite that I had, and so I don't regret taking it (that much), but if you have liver problems and/or severe depression, you might want to try something else.

Got joint pain?

I woke up middle of the night Friday with an incredibly swollen and painful right ankle and leg. I thought I had pulled a tendon or muscle, and so I didn't pay too much attention to it. Madaleine and I went to Carter Lake, and I hobbled around and did a bit of yoga while she bouldered. But I also called a friend of mine and told him about my ankle. He suggested I visit the hospital, and so after Bouldering we headed there. By that time, my left ankle was also hurting, but not too badly. They did blood tests found my organs were functioning fine and sent me home. Their theory was that I was having an allergic reaction to the Alinia I had taken from Feb. 16-26 to get rid of the Blastocist hominis (protozoa) I picked up in Pakistan/India years ago, or that it was some sort of autoimmune response because all the blastocist died (sort of a die off thing). But they didn't really know. They sent me home and told me to RICE.

So the next morning I get up, and I can't walk. Both ankles are hideously swollen. A friend who does accupuncture comes over to check out my ankles and offers to do some work on them. But by the time I got to her office three hours later, my ankles had gotten much worse. She took me to the hospital.

After wheeling me in, a series of nurses and specialists (regular doctor, Infectious Disease doc, arthritis doc) examined me. I resisted the morphine at first, but eventually the pain because sort of unbearable. In conclusion, they still don't really know what is going on, but the latest and most likely assumption is that I am having some sort of arthritic reaction--possibly to the Alinia or possibly to something else. The arthritis doc actually thinks there's a good possibility that I do have arthritis.

The bad news is I still can't walk. The good news is the pain is like 50X less than it was yesterday. I don't think I've ever had that much pain. I thought my ankles were going to explode. They put me on morphine. And then they put me on valium because they had to stick needles into my ankles. That was perhaps one of the most unpleasant experiences of my life. Here I have these enormous, swollen, discolored ankles, and this doctor is sticking this fat needle into it, moving it around, trying to find the joint. She didn't end up finding what she needed either.