Monday, October 31, 2016

The 2016 California Coast Classic: The Aftermath


As perhaps expected by those of you actually living with rheumatoid arthritis, I did end up paying a quite a price for doing something so crazy. I felt ok through the evening of day eight, but then the adrenaline finally wore off. I woke up the following morning with a worse headache than I have had in many years – and, unfortunately, a full day of traveling with small children ahead of me.

I managed to stay upright, get myself and my family to the airport, survived through the flight, and made it it to baggage claim before I completely ran out of stamina. Thank goodness my mom was waiting to pick us up at the airport! She took us home and I went straight to bed and literally stayed there for at least 18 hours. My energy came back to me slowly over the next few days, though I’m still having some challenges in that department as I attempt to wean off the extra medications I was taking during the ride.

My hands have been slower to bounce back, particularly the left one. I still don’t have a lot of gripping or squeezing capabilities in my left hand, so I’ve gotten quite good at eating right handed over the last two weeks! The smallest two fingers on my left hand are also still problematic, though I am starting to be able to use them again while typing – which is honestly a relief. Writing is not only my livelihood but also an important part of stress management for me, so not being able to type as fast as I would like to has been a real source of frustration.

My lip has also been a slow process of recovery. It has been a very painful and honestly disgusting experience, so if you need a TMI warning you may want to skip the rest of this paragraph and the next one! After the blisters appeared on day six I did my very best to protect my lip from further damage, but I still spent several more entire days out in the sun and wind. And it was really hard to apply any sort of ointment in porta potties at rest stops with hands that were covered in sunscreen and road grit (not to mention with barely functional fingers). The blisters started bleeding and overnight my lips would get glued together with blood, then everything would crack open in the morning. It was so painful that it made it hard to eat or smile, and when my younger son accidentally bumped into my lip on day seven I literally burst into tears from the pain. I’ve experienced my fair share of pain, and this was honestly some of the worst in how it made me feel dizzy and sick to my stomach.

When my lip wasn’t looking much better after a day at home, I made a doctor’s appointment – not with my regular doctor but with the first available one. He examined my lip and I honestly don’t think I’ve ever seen a doctor make a more grossed out face. He kept saying “I think it may need to be debrided, but I wouldn’t want to do it!” which was not exactly encouraging. It was rather unprofessional, but I tried to find the humor in it. He sent me home with an appointment to see the ENT nurse practitioner later in the day. Luckily the ENT nurse said I didn’t need debridement. She gave me some double antibiotic ointment and a prescription for a topical steroid ointment and told me to rotate them. When I picked up the prescription ointment later that day, the pharmacist told me to be really careful as it could actually increase my chances of infection – at which point I thought I might scream. Luckily, I didn’t get any sort of additional infection, and rotating the ointments over the past two weeks has led to my lip almost being healed. I may even be able to kiss my husband and kids again soon!

I hope these last few posts have helped explain what I meant when I said the experience was amazing and terrible. I loved it and I hated it. It was really, really hard – but also really, really rewarding. Before being diagnosed with RA the word “athlete” was certainly part of my identity – but it’s definitely a word that has been missing from self-descriptions over the past eight years. It was quite incredible to re-discover that feeling inside of myself, that missing piece of my identity. To have a chance to re-claim that word and mold it to better fit the person I am today. To remind myself that despite living with RA, I can reach any goal I want to – as long as I have enough determination (and patience to deal with whatever follows). I don’t know that I’ll be getting back on my bike anytime soon, but I’m so glad I did in the first place.

Sunday, October 30, 2016

The 2016 California Coast Classic: Day Eight


Day eight was a total of 55 miles of riding, but the catch was that everyone had to be at the check point by 1:30PM so that we could all cross the finish line together. I thought it was pretty unlikely that I was going to be able to manage that many miles in that amount of time, so for the first time in a week we didn’t rush out of camp at the crack of dawn, and a more leisurely breakfast was much appreciated. My lip was in terrible shape, so I couldn’t even kiss APL that day for finish line luck – we had to settle for “nosy-nosy” like we do sometimes with our kids!

After seven straight days of riding, maybe I had improved my speed somewhat, because we actually made pretty good time despite our later start. I think it might have even been possible for us to ride all the way to the checkpoint in time – or at least gotten really close – but then APL got a flat tire, which took a while to change. And then he got another one. And after that it was tight to make it to the checkpoint on time even by sag van! The van ended up taking us the last few miles and dropped us at checkpoint with only about three minutes to spare. We still rode about 44 miles on day eight – but poor APL got flat tire #3 as we crossed the finish line.

I’ve now been to four CCC finish lines, but this was my first time as a rider and I wondered if it would feel much different from “the other side.” While I was really proud of my accomplishment and very happy to be finished, I do have to admit that the finish line generally isn’t my favorite part of the experience. It’s loud and chaotic with a lot going on – and this time the anxiety of almost missing it honestly made the whole experience a bit anticlimactic for me.

Also, the finish line celebrations always end up being right in the middle of our boys’ nap time. So just like in past years, our tired boys – who hadn’t seen us for an entire week – weren’t exactly interested in listening to speeches! Based on our past finish line experiences, I wasn’t surprised to find myself sitting on the pavement with a crying four-year-old in my lap less than five minutes after getting off my bike. And, once I got that one calmed down, I ended up with a cranky two-year-old strapped to my back ten minutes later. Then the four-year-old went off again and I found myself carrying around 70lbs of little boys after riding my bike for eight straight days. So we had to say our goodbyes and head out of the celebrations a bit early.  

In the end I rode 467 miles and did 25,786 feet of climbing – and that is certainly something to be proud of. 

To be continued…

Saturday, October 29, 2016

The 2016 California Coast Classic: Day Seven

I did finally run out of stubbornness on day seven. I was tired and sore and had a lot of trouble getting moving that morning - and my lip was a painful mess. The day started out with some beautiful back country roads that went winding through the oak trees, a type of California landscape that I truly love, but it also included a fair amount of climbing which didn’t help me move past my exhaustion.

I knew that the route for the day went on to include more climbing, but next part would be along the 101 freeway. Riding near traffic provokes a lot of anxiety for me, especially when the traffic is going fast – which it obviously would be on the freeway. Having driven that section of the route before, I really wasn’t looking forward to riding it. And, after six full days in the saddle, I wasn’t honestly sure that I had enough energy to do it safely. So, after riding 400 miles, we got in the sag van for the first time.

The sag van took us to the first rest stop, where we decided to try riding again. The next section was still along the 101 freeway, but only for a few relatively flat miles – so I thought I would be able to handle it. While I did okay, I really did not enjoy riding along the 101, so I think I made the right call in deciding to skip as much of the 101 as possible.

By the time we made it to the second rest stop, my joints were screaming, my head was aching, and my lip felt like it was going to fall off – and there were still 31 miles until camp. I reluctantly decided to call it a day, and we sagged the rest of the way to camp. (We still rode almost 40 miles that day.) 

I’m really glad that we decided to sag, because my dad was already at camp when we got there. And my in laws arrived with our boys not long after we did. If we had finished riding those miles, our family would have been sitting and waiting for us until we got to camp in the dark. Instead, we had time to play with our boys on the beach for a bit before dinner, and after a week apart it was much needed for everyone.

To be continued…

Friday, October 28, 2016

5 Tips to Improve Communication and Teamwork With Your Partner

Long-term relationships are complicated – even more so when one person is living with a chronic illness. 

In my latest guest post for Mango Health, I share some ideas for working with your partner as a team. 

The 2016 California Coast Classic: Day Six

Day six also dawned foggy and cold. My hands were still bothering me a lot, and the cold really didn’t help. Day six was also the day that my swollen lower lip finally broke out in blisters. Later, doctors decided that the lip blisters were due to a combination of the enormous amount of sun I was exposed to, my skin tone, my history of cold sores, and – maybe you guessed it – the immunosuppressant medications I use to control my RA. So I suppose it was really no surprise that the blisters occurred the day after my methotrexate dose. I did my best to keep my lip covered in Carmex, but it didn’t seem to be helping and it only got worse as the day wore on.

The first 34 miles of the ride on day six were like farmland purgatory. At first it was sort of nice – the road was flat and it was fun trying to identify the crops as we went by. Some of them – like strawberries, peppers, celery, and dill – you could identify not only by sight but also by smell. But as we kept riding through fields in a gray fog, zig zagging our way across the valley, it began to feel like we weren’t making any progress. The roads were also extremely bumpy, likely torn up from farm equipment driving over them, which was really difficult on my hands.

So I was really grateful when we finally made it into the hills, even though that required some climbing. The roads were better and the vineyards were beautiful. But I was still feeling pretty sore overall and exhausted from the methotrexate (not to mention five previous days of bike riding!). I began to run out of steam as we neared the climb that the other riders were calling “The Wall.”

Apparently, however, I hadn’t yet run out of stubbornness, so I forced myself slowly up The Wall literally cursing the entire way. I cursed the vineyards and I cursed bikes in general. I cursed whoever first decided it was a good idea to ride a bike uphill and I cursed whoever thought it was a good idea to do this bike ride (meaning I totally cursed myself.) My lip was painful and bleeding and I was really struggling, but the cursing and APL helped me laugh and keep moving forward. Eventually, I made it up The Wall.

I was rewarded on the other side with a long downhill through some beautiful countryside (though that road was quite a bit bumpier than my sore hands would have preferred). We went past a ranch that had some buffalo and got to see a baby buffalo who had just been born that morning, and that cheered me up considerably. And, after 70 miles and 3,200 feet of climbing, we even made it to camp on time for happy hour and got to taste some local whiskey and beer. And I was upright enough to participate!

To be continued…

Facing Forward: Alisha

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Alisha
Location: London
Diagnosis: Fibromyalgia & a number of other conditions including depression, anxiety and PTSD/C-PTSD
Age at Diagnosis: I was 16 when I was first diagnosed with depression, and 25 when I was diagnosed with fibromyalgia, though I’d experienced symptoms my entire life. The other diagnoses came in my late twenties.

How are you currently treating your condition?
The fibromyalgia diagnosis was a crucial point in forcing me to realise I needed to care for both my body and mind. I’d already lived with depression since I was a child, but until I started learning more of fibromyalgia, I didn’t realise the extent to which diagnoses could impact on each other.
I take medication to help with the different symptoms like physical pain, IBS, gastritis, low mood, and anxiety. While medication helps, for me I’ve seen the best turnaround in my overall health (and life!) combining that with changes to diet and lifestyle. I grew up eating mostly fresh fruit and veg from my grandad’s farm. When I migrated, I forgot all about it and allowed myself to be influenced into the world of processed foods, fizzy drinks, and high sugared foods. I turned everything upside-down, went back to basics (fresh, healthy foods), trying to limit processed foods, and made hard lifestyle choices at a time when I was most ill. I started physiotherapy. Returning to work was crucial, in that it forced me to get the only exercise I could then manage with my high pain levels. That helped. I lost weight, there was less pressure on my joints and muscles and overall I started feeling a lot better.  The mind part can be tricky, but when you start benefitting from better physical health, I think it’s impossible for that not to impact on your mental/emotional state. I started engaging in talking therapies, mindfulness and generally tried to be more open about ways of thinking and being. Once all this happened, I was in a better place to work on my non-existent social life. This can’t be left out. Nope, non-negotiable. Life with chronic pain can be isolating, and we often forget how this can affect our mental and physical states. Trust me, this package still works!
 
What are the biggest challenges you have faced since your diagnosis?
Self-judgement; other people’s non acceptance or lack of understanding. Stigma, and discrimination; Issues related to invisible disabilities. Things like, when I don’t have my walking stick (tossed it at the back of the closet!) and on the train I’m either having to stand when I’m feeling terribly unwell or feeling pressured to give up my seat to someone else whose disability is visible. Or people constantly commenting on why I take the lift when I climb the stairs.

What are your favorite tips and tricks for managing everyday tasks?
The tricks I use depend on what’s going on the day. Pain issues while I’m out or busy – Ginger chews (also used for dizziness & IBS), ginger tea, light stretches and bottles of my home-made raw juices; Pacing (do what you can, in the way that you can manage best), challenging thoughts (I do so much better when I remember to stop over-analysing, stop being so self-critical and try to look at the whole picture. For example, I’m now less lightly to get anxious because someone has been awful- I try to think of what’s going on for that person. Not always easy when one is in pain and dealing with a slew of symptoms but it helps). Having a change of environment (a 5 minute walk away from my desk or flat even helps). A bite-size conversation with a friend (even via text on my lunch break can bring a change of perspective and improve my day bucket-loads!); Laughter (preferable shared).

How do you manage to keep facing forward every day?
I remember yesterday when I didn’t think I would make it or be here today; and I am still here, plodding on. If I did then, I must be able to press ahead to tomorrow. Every day, no matter how bad, is experience. Tomorrow absolutely has to be better.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Not to worry so much, it won’t be easy but things will get better. Not by anyone else’s hands but yours.

Do you have a blog you would like to share?
My blog is The Invisible F. I am also on Facebook and Twitter.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Thursday, October 27, 2016

The 2016 California Coast Classic: Day Five


Day five started out foggy and cold, which was rather difficult when it came to my painful hands and wrists. I went slow and did the best that I could to grip the handlebars carefully. There was an unofficial rest stop at a cookie shop and they were giving out free coffee – I don’t think I’ve ever been more grateful to hold a hot cup of coffee in my hands. The fog did eventually burn off, though, and the day warmed up to hot.

Somehow, as the day wore on, I began to feel worse and worse. At first, I couldn’t quite figure out why – there was only minimal climbing and 55 miles didn’t even feel like that much riding to me anymore. Why was I struggling so much? Then I realized why: I had taken my dose of methotrexate the night before, just like I do every week. Though sometimes the methotrexate doesn’t bother me, other times it leaves me feeling exhausted and nauseous the following afternoon. So I struggled through the last few miles of the day as the chemo hangover hit.

It was a relatively short and easy day and so we got to camp early – actually in time to join happy hour and to socialize with the other riders, which was rare. Unfortunately, I was feeling way to gross and exhausted by that point. I had to go straight to our tent (which our friends had kindly set up for us) and lay down. I stayed in the tent resting while APL went with our friends for margaritas, which did make me feel a little sad. But I knew that the rest would be the best thing to give me the chance to ride again tomorrow. And I did feel a bit better by dinnertime.

To be continued…

Wednesday, October 26, 2016

The 2016 California Coast Classic: Day Four


APL warned me that day four was one of the hardest days of the ride – and it certainly had the most climbing! Everyone was talking about “the Twin Sisters,” two steep climbs that occur one after another on the way out of Big Sur, but there was a fair amount of climbing before we even got to those. In fact, we started with a big climb directly out of camp.

But it was also a beautiful day. We passed Julia Pfeiffer Burns State Park, where a waterfall falls directly from a cliff and on to the sandy beach below. Though I had driven past the park on previous tours, you can’t see the waterfall from the road – and I had never had a chance to stop since I always had to set up the rest stop before the riders arrived. So I was excited to have a chance to see the waterfall and take in all the sights at a slower pace.

We were almost the very last riders to arrive at the rest stop before the Twin Sisters climbs. Strangely, instead of feeling intimidated by the challenge, I felt invigorated. I knew I could do it – and it had been a long, long time since I felt that sure of my physical abilities. But I also knew that I would have to go slow and stop a lot, so as the sag team started discussing sweeping the few riders who were behind us, we hurried back on to our bikes so that I could attempt the climb on my own.

I will admit to feeling a flicker of doubt when I saw the second Sister looming up in front of me – after having just climbed the first – but I kept moving forward at whatever pace I could manage. I made it to the top, and the feeling of accomplishment was one that I haven’t felt in many, many years. Likely since before my RA diagnosis. It was an almost unrecognizable feeling, but it felt fantastic.

Unfortunately, after having accomplished the majority of the climbing, there was still about 24 miles to ride before we got to camp. It was pretty easy riding, but it was still mile after mile under my tired legs. It helped that there was a beach covered in elephant seals near the end – so we were able to stop and watch them for a few minutes, which was fun.

Unfortunately, about five miles out from camp I essentially ran out of gas. But instead of flagging down a sag van, I stubbornly pushed on – determined not to let five miles stop me after everything I had accomplished so far. I knew we were headed to a new camp than previous years, but what I didn’t realize was that it was at the top of another climb – just like the camp in Monterey. But unlike Monterey, I had no fuel left in my tank and the climb nearly killed me. I felt like I was going to cry, but I was persistent. By the time I made it to the top, I was literally the last rider into camp, dinner had already started, and I couldn’t do much more than flop down in the parking lot for a few minutes. Someone from the Arthritis Foundation saw me and graciously brought me a soda and helped APL find our bags. Then I dragged myself to dinner, which I ate like a zombie.

Thankfully, APL and I had decided to get a hotel room that night thinking that it might be a good idea to splurge halfway through the ride to give me a break. After dinner I sank very gratefully into a short Epsom salt bath and then went straight to sleep in a real bed. Definitely a good choice!

To be continued…

Tuesday, October 25, 2016

The 2016 California Coast Classic: Day Three

On day three, I woke in the tent (in the dark) with a pretty severely swollen lower lip. I guess the chapstick I was using wasn’t up to the task and so I ended up with a badly sunburned/windburned lip. The swelling went down a bit after I got moving and took my morning medications, but it was the beginning of a battle with my lip that I am still fighting two weeks later as I type this.

Day three may have been my favorite day of the tour – it was certainly one of the most beautiful. We rode around the rest of Monterey Bay and then onto 17 Mile Drive, which was a portion of the route I had never seen before as it requires a pass to drive it. The coastline was gorgeous and we stopped for a few minutes to listen to some sea lions barking and to check out the Lone Cyprus.  

Then we headed into Big Sur and over the Bixby Bridge, which did include a couple of big climbs. But, with a wider shoulder, plentiful turnouts for stopping to rest, amazing scenery, and a little more confidence from the first two days of the ride, I was able to manage the climbs without too much trouble. Though I will admit that the rouge rest stop at the top of the Bixby Bridge climb was a lifesaver for me as it was really very hot that day. The van offered us cold water, ice for my knee, and a few slices of orange, which I think was one of the best things I have ever tasted.

We rode about 47 miles and climbed about 2,700 feet and then stopped about a quarter mile from camp at The River Inn to put our feet in the Big Sur River and have some beer. Sitting in the Adirondack chairs in the river and chatting with other riders was extremely relaxing. I also had an opportunity to soak my sore hands and wrists in the cold water, which seemed to help a lot.

By the time we made it to camp we found that our third Team Z teammate and our friends from Team Princess Parade had already set up our tent. Since they rode so much faster than us and always made it to camp early, they continued to set up our tent every day of the ride after that. Though our tent is really simple to set up, this token of their support really meant a lot to me every time.

On day three we eat dinner in two groups at the Big Sur Inn, so we had some time to kill until the second seating. Based on how good the river had felt on my hands I ended up finding a deep spot near our camp and wading in to my waist. I just walked straight into the water in my sweaty spandex and it felt fantastic. I ended up dunking myself entirely and feeling very refreshed. I extra enjoyed my hot shower that night too!

To be continued…

Monday, October 24, 2016

The 2016 California Coast Classic: Day Two

To hopefully avoid the stress I felt from the time pressure on day one, we tried to get moving as quickly as possible on the morning of day two – and pretty much every morning of the ride after that. I knew I was one of the slowest riders out there, so I wanted to give myself as much time as possible to complete the miles. We got up in the dark at 5:30am every day, but even though I was taking extra medication it still took me a while to shake off the morning stiffness. So despite our best efforts, we generally ended up leaving camp in the middle of the pack, and falling to the back of the pack as the morning wore on.

Though I had prepared pretty extensively for the possibility of pain in my hips, legs, and knees, one thing I didn’t really consider was likelihood of pain in my hands. Though, on reflection, it makes complete sense that my hands might be painful and sore after 85 miles of gripping and braking over rough and bumpy roads. I think my hands were also in particularly bad shape due to how anxious I had been on day one of the ride – I was probably gripping the handlebars way tighter than I needed to be.

My left hand was unfortunately worse off than my right, with my two smallest fingers seeming permanently and painfully curled from the intensity of my grip the day before. I awkwardly ate my breakfast with my right hand (I’m left-handed) and then I found some heat packs and tried to get my wrists and fingers moving again. The heat and my morning medications helped, and I tried to make conscious effort not to grip so tightly after that and to try to vary my position on the handlebars and breaks. Nevertheless, even two weeks later as I type this, I am still having trouble with my left hand.

Luckily, day two was significantly shorter than the first day at about 53 miles. It was still longer than any of my training rides, but it seemed far less challenging after my accomplishment the previous day. There was also a lot less climbing, only about 2,300 feet. So there was actually time to stop for coffee, to watch some otters playing under bridge, and to watch a guy flying a parachute over Monterey Bay. I began to enjoy myself a little bit more.

Having been on the tour twice before, I knew that there was a pretty steep hill to climb on the way into camp – but it honestly wasn’t that bad­­. Though we were still at the very back of the pack, we made it into camp a bit earlier and I had some time to rest before dinner. I even managed to socialize a bit after dinner which was really nice. Honestly one of the best things about the tour is being able to talk to other people who are living with the impacts of arthritis – my arthritis family – so it was a bit frustrating on the days when I didn’t have time or energy to socialize.

To be continued…

Sunday, October 23, 2016

The 2016 California Coast Classic: Day One


Considering that the mileage for day one was almost double the longest ride I had ever managed to take while training, I was extremely anxious to get started the first morning. The speeches at the welcome breakfast seemed impossibly long – even to someone who is as committed to the cause as I am. Finally, they let us go and we started riding out of the city. Aside from a little nervousness about riding through areas that were crowded with pedestrians and vehicles, I did ok – until we got to “the Devil’s Slide.”

Although this climb was not nearly as steep or long as some of the others we faced later on the ride, I found it particularly terrifying. For one thing, because it was Saturday there was a lot of traffic coming up and down the hill, and it was moving fast. There was essentially no paved shoulder whatsoever – and not much dirt space between the edge of the road and the mountainside. And, unfortunately, the only way I am able to convince my joints to keep riding uphill is to stop and rest periodically. These issues turned out to be a bad combination.

Though I went as far as I could without stopping, I found myself forced to stop several times on the way up – essentially clinging to the mountainside while cars whizzed past me. Re-starting was also real challenge. Clipping into pedals is never an easy task when going uphill, and it was made even more difficult by the lack of space and traffic zooming around me in frustration. I did manage to make it to the top in one piece, but then I had to take a break to sit down and literally cry my anxiety out. What on earth had I gotten myself into?

APL sat next to me while I cried for a while. Then I looked down at the green ribbon wrapped around the frame of my bike with more than 50 names of other people living with arthritis. All of those people wanted to believe that it was possible to take on a crazy challenge in spite of arthritis. They were there with me. It was the first of many times that those names helped me keep moving forward when I thought about giving up.

I really wanted to ride the entire first day – to get what felt like a success under my belt so I could feel more confident about the seven days of riding that would follow –  but I knew that we had to get to camp by 6:30pm. After the morning’s late start, I felt an immense amount of time pressure all day long, which didn’t help with my confidence or my feelings of anxiety. I worked as hard as I could to keep moving forward, stopping for only a few minutes at a time and only when absolutely necessary. But having worked at rest stops on two previous tours, I knew we had fallen to the very back of the pack because they were already shutting the rest stops down by the time we arrived (and there was no more pineapple juice or pickles, which sadly became the theme of the week.) I worried that the sag van would try to pick me up before I could make it to camp.

In the end, I was able to ride all the way into Santa Cruz -  at total of 85 miles with about 5,400 feet of climbing. We pulled into camp around 6:45pm and it was already getting dark. We had missed announcements and dinner had already started, so there wasn’t much time – or energy – for socializing with anyone. We set up our tent, ate, showered, and went straight to sleep. But I did feel very proud of myself for managing to ride every mile of the first day.

To be continued…

Saturday, October 22, 2016

The 2016 California Coast Classic: My Experience

I’ve been wanting to share more about my experiences riding in the 2016 California Coast Classic, but to be honest I’ve had a bit of difficulty figuring out just how to begin. As a whole, the experience was both amazing and terrible. I loved it and I hated it. It was a completely crazy goal but somehow also totally possible. I don’t know if I’ve ever questioned my abilities more or, at the exact same time, been more sure of them. The way I feel about this experience is quite a paradox, so I guess the best thing to do is begin at the beginning and try to move forward from there!

It was a really long day of travel for our family to get from Colorado to California in the first place. Minivan to the airport. Train to the terminal. Several hours on an airplane (including about 20 minutes of flat out screaming from a two-year-old, who shall remain nameless, who was disinclined to buckle up during landing). Tram to the BART station. BART into the city. Trolley car to the hotel. Not to mention wrangling suitcases, camping gear, car seats, diaper bag, a bag full of plane entertainment and copious snacks – thank goodness we shipped the bikes! The boys were real troopers but we were all tired by the time we arrived.

By far my favorite part of the long journey was during turbulence on the plane, and again when the BART train shook a little, when my two-year-old put his hand on my chest and said “I got you, mama.” I was really nervous about the upcoming week, but if my son could be so sure of the world and his own small abilities, surely I could face the challenge bravely. We finally met Grandma and Grandpa in San Francisco, and it was a relief to know that my boys would be lovingly cared for so that I could focus on my goal. And getting to have In-N-Out for dinner didn’t hurt either!

To be continued...

Friday, October 21, 2016

Facing Forward: Joan

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Joan
Location: Philadelphia, PA
Diagnoses: Sjogren’s Syndrome, Celiac Disease, Gastroparesis, POTS/Dysautnomia
Age at Diagnosis: 20, 18, 18, and 19 respectively, but all my symptoms started at age 10

How are you currently treating your condition?
I am currently on a lot of medications, the big one being Imuran/Azathroprine to treat Sjogren’s as it is the underlying cause of all my other issues. I am then on a bunch of other meds and supplements for different conditions and symptoms. I also just started doing botox treatments for gastroparesis. I have a very strict gluten free diet and try to eat low fiber and low fat. I heavily rely on tube feeds and daily IV fluids as well.
 
What are the biggest challenges you have faced since your diagnosis?
I have trouble finding the balance between keeping up with other college students around me while not overdoing it and wearing myself out. I just want to be like everyone else and have as normal of a life as possible, and I do succeed in many ways, but there are parts of my life that will never be totally normal. Accepting that is one of the biggest challenges I have faced. Many people may think is sad that I have accept the fact I probably won’t get better or every be totally healthy but I think it is what helps me live every day to the fullest and not waiting to achieve my goals in life till when I am healthy.

What are your favorite tips and tricks for managing everyday tasks?
I try to prioritize and set aside a day a week to do chores that I don’t have energy to do after a day of classes and work. Every week in the side of my planner is a to do list and I can usually manage a couple tasks a day so I decide on what is most important. On the weekends I try to cook but during the semester I heavily rely on frozen meals for when I am well enough to eat orally, the microwave is my best friend on low energy days.

How do you manage to keep facing forward every day?
I always try to keep in mind all the good things I have in life. I have amazing friends and family. I love my job teaching Hebrew School, and all my coworkers and boss are very supportive of me. Last time I was in the hospital all my students made cards and a coworker/friend brought them to me. It’s hard to feel anything but happy when surrounded by 25 cards made for you by 1st graders. I also try to keep the goal of finishing my program at school in mind so I can be teaching full time.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
My journey to diagnosis was so twisted that I am technically only diagnosed 3 months ago even though I have been chronically ill for a decade, so I will go back to the day I went to a new doctor for a second opinion on my knee pain and found out I would need two hip surgeries. I would tell my 16 year old self that she is stronger than she knows but it will get harder and that’s okay. She will be so much better off one day and she will still make her dreams happen. I would let her know she has only seen the beginning of the battle but she should listen to her body even when the doctors disagree with her but eventually she will have an amazing team of doctors as well as an amazing support network.

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