A Profile of Mariah Leach: Mom, Blogger, Bicyclist

I'm excited that I recently had the opportunity to chat with the amazing Lene Andersen, author of The Seated View, about my experiences riding in the California Coast Classic. Her main question was a great one: why?!?! 

You can read the full interview here!

What I Be

While I was at the 2016 Joint Decisions Empowerment Summit in Philadelphia a few weeks ago, I had the opportunity to participate in Steve Rosenfield's "What I Be" project. The project is a social experiment that encourages participants to put their biggest insecurity out in the open and expose a side of themselves that no one sees. Participants then make a statement: "I am not my _____."

As you may be able to glean from my image, my biggest insecurity is asking for help. But, when Steve asked me to explain why I don't ask for help, I have to admit was sort of at a loss for words. There are so many reasons that it is difficult for me to ask for help - and I found I couldn't possibly explain them all in the 15 minutes we had to take my photo. The simplest explanation we were able to come up with is that I don't want help - and so we settled on: I am not my pride. And there is absolutely some truth to that.

But, in reality, the reason I have trouble asking for help is a lot more complicated than simple pride.

I don't want help.

I hate that I so often need help.

I don't actually realize I need help until it's too late to ask.

It's uncomfortable to ask for help.

I feel guilty for needing help in the first place.

There isn't anyone to ask for help.

It takes more energy than I have to find someone I can ask for help.

I tried asking and nobody listened.  

I recently asked and it feels too soon to ask again.

People expect you to only need help in special circumstances, not all the time.
 
Everyone assumes I look fine so I don't need help. 

I think this list could probably go on and on. Because the reason I find it difficult to ask for help is a lot more than simple pride. It's also guilt. Exhaustion. Anxiety. Frustration. Habit. Self doubt. Fatigue. Resilience. Endurance. Strength. Lack of any other option. The simple reality of living life with an illness that never, ever goes away. Because the truth is that people living with chronic illnesses are some of the most likely to need help - but often the least likely to ask for it.

I don't really like this picture of myself. To my own eyes my face looks exhausted and drawn, but I guess that's sort of the point. I look like someone who could use a little help, and the words on my face make that clear. So I want to share this image to remind myself how important it is to try to ask for help when I need it - and I hope that by sharing I can remind others who are struggling that it's ok to ask for help too. 

(If you'd like to see the images from the other Joint Decisions participants, you can check them out here.)

Schwartz Bioresearch Review & Giveaway

As stated in my product review policy, my reviews will always be honest. I was provided with free samples of products to review, but I was not otherwise compensated for this post.

In my experience - and from what I've seen in the wider RA community - the most effective way to get the symptoms of rheumatoid arthritis under control is to make sure you being treated by a qualified rheumatologist. Your rheumatologist is the person best qualified to evaluate the impact of the disease on your joints and to offer you treatment options. Working as a team with your rheumatologist gives you the best chance to find a working treatment.

But even if you are lucky enough to find a working treatment, you may still experience some RA symptoms. Personally, that's when natural treatment options become useful for me. I take a fish oil supplement regularly and I also try to incorporate natural anti-inflammatory foods and spices into my diet when possible. I also find a lot of relief from massage and I know others who have had success with acupuncture. As long as you check with your rheumatologist to make sure natural treatments don't conflict with any medications you are taking, I think they are always worth a try.

Schwartz Bioresearch sent me a sample of their probiotic to try. While digestive issues aren't directly linked to RA, you may remember that I had issues with a stomach infection about a year ago. Once I got that infection under control, my doctor had me start taking a probiotic to help keep things more regular in the future. I also sometimes find that my stomach gets a bit upset when I have to take additional pain medications, such as NSAIDs or opioids. In general, I find that taking a probiotic really helps my digestive system feel more comfortable. It's honestly rather difficult to compare how this particular probiotic works in comparison to others I have tried, because there are so many factors that play into digestion, but so far I'm feeling pretty good about it.

I was also given a sample of their turmeric supplement. Turmeric is a yellow spice that is part of the same family as ginger. The active ingredient, called curcumin, has natural anti-inflammatory benefits. Several studies have found that people suffering from RA who consume turmeric on a regular basis experience additional relief from joint pain and inflammation. An easy way to incorporate more turmeric into your diet is to eat more curries and other Indian and Asian dishes. Or, with your doctor's approval, you could try a turmeric supplement. I had been taking an extra dose of prednisone while I was riding in the California Coast Classic, so I have been in the process of weaning down to a lower dose. I'm hoping that the turmeric supplement may provide just enough anti-inflammatory benefit to help make it possible for me to stop taking prednisone all together, and so far my weaning has been mostly successful.

Unfortunately, as useful as nutritional supplements may potentially be, they are ordinarily not covered by health insurance - and money spent on them is also not deductible - so cost can sometimes make it rather difficult to consider trying these options. For that reason I wanted to share that Schwartz Bioresearch is offering a giveaway that runs from now until November 30th. You can enter to win a $100 Amazon gift voucher that will allow you to try the products of your choice. If you are interested, you can enter the giveaway here (but please remember to check with your doctor before trying a new supplement!)

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.

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…

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…

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.  

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…