Archive for category Symptoms

A Rash New Symptom

I am long past overdue for a blog post! Things have been crazy in my world. My grandfather passed away and my sister had her baby seven weeks early (both are doing well). Meanwhile my works been busy (in a good way) and I’ve been fighting a cold ever since getting back from the funeral two and a half weeks ago.

To top all that off, I’ve been experiencing my strangest symptom yet: hives. I woke up a week ago with huge hives covering the back of my right thigh and a small part of the back of my left thigh. It’s evolved from being lumps, to a big red blob, to small bumps, to now taking on a purplish hue.

I went to my rheumatologist on Friday, and he ruled out the rash as a sign of Lupus. He also didn’t think it was a bug bite or related to my Raynaud’s/Chillblains. He told me to skip my Enbrel this week and follow up with a dermatologist if it was still around Monday, but of course they all seem to be booked through the first week in December. So that leaves me guessing and Googling at what could be the cause. A sudden onset allergy to Enbrel? A random reaction to my cold? Some bizarre complication of RA?

Have any of you experienced anything like this? My solution for now is to go to urgent care if it gets worse, and to do my best to ignore it until it gets better.

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This is Just Ridiculous

Well, my running and office life have once again been sidelined by my health. For the fourth time since getting my wisdom teeth out in June, I’m sitting at home, swollen, bored, exhausted, and on antibiotics and pain meds (oh, and off my RA drugs to let the antibiotics do their job).

The first time was being swollen for about a month after getting the teeth removed. The second two times were when blood started collecting in my right jaw – a hematoma or blood tumor. That happened twice, people! Each time involved making an incision in my gumline/inner cheek under local anesthesia, draining the blood, undergoing antibiotics, and giving it time and rest to make sure it healed.

I’ve been totally fine and hematoma/jaw swelling free for five blissful weeks.

Then, this last weekend I had subtle, sporadic pain in my left ear. I was busy having a blast at a wedding, so I ignored it. Sunday night, I had some pain in my lower left jaw. I noted it, but went to bed.

Then, Monday morning I woke up to one half chipmunk cheek. Whhhhhhyyyyyyy?????

If only I were this cute.

Of course, the oral surgeon who I had been doing follow up care with was out of the office Monday, so I went to a new dentist who ruled out a tooth infection and put me on antibiotics.

I spoke to my marvelous rheumatology nurse at least four times, trying to determine if it could be related to Rheumatoid Arthritis. The short answer is, yes, it could, but it probably isn’t.

So Tuesday I went back to my oral surgeon. He ruled out a hematoma or an infection, but numbed me up, sliced in, drained the area, “smoothed” the bone, and added a “drain” in my gumline to prevent fluid from building in my jaw again. Fun stuff, let me tell you. Apparently, he believes my body was reacting to a stray bone fragment left over from getting my wisdom teeth removed. Great, so could this happen spontaneously for years??

Since Tuesday, I’ve been taking my antibiotics, managing the pain with Percocet and IBProfen, and WAITING for the swelling to go down so I can look and feel like myself again. I’m still waiting.

I’m going in to see my oral surgeon tomorrow to hopefully get the drain out and get more answers. In the meantime, cabin fever is setting in because I’m supposed to be relaxing. Though good for blog posts (as in, I actually find myself writing them), this is pretty bad for sanity. :/

I’d like to ask you RAers if anyone has experienced lower jaw swelling related to their RA? What was it like and how was it treated? 

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Invisible Illness Week

Alright, officially Invisible Illness Week was Sept 9-15th, but better late than never, right?

1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: probably 2010
4. The biggest adjustment I’ve had to make is: listening to my body and taking it easy when I’m in pain or fatigued.
5. Most people assume: they know what Rheumatoid Arthritis is, but they’re usually thinking of Osteoarthritis.
6. The hardest part about mornings are: I move a little slower than I used to. AND remembering to take my vitamins.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Oxo Good Grips kitchen tools and my grip jar opener
9. The hardest part about nights are: when fatigue equals a busy mind and insomnia, not sleep.
10. Each day I take 6 -14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: will try anything. Personally, yoga, acupuncture and changing my diet (no gluten, less dairy and sugar, more veggies) help a lot. If I could afford it, I would get massages more often.
12. If I had to choose between an invisible illness or visible I would choose: I’m a private person, so probably invisible.
13. Regarding working and career: I’ve kept my career, but I’ve embraced (and have been blessed with an office that embraces) a flexible schedule. This lets me start my mornings slower or work from home when I need to.
14. People would be surprised to know: how bad my symptoms were before I went to the doctor. I was really good at the “grin and bear it” denial technique.
15. The hardest thing to accept about my new reality has been: that this disease is chronic. When I was diagnosed I thought I would be the exception to the rule and go into remission within the year. This hasn’t been the case.
16. Something I never thought I could do with my illness that I did was: RUN a marathon.
17. The commercials about my illness: feature older people golfing and make me roll my eyes.
18. Something I really miss doing since I was diagnosed is: going out for a night drinking with my friends. This is a double no for me because the drugs I take (methotrexate) are hard on your liver and I try to be kinder to my body these days.
19. It was really hard to have to give up: alcohol (see above) and high heels. I still indulge in both on occasion.
20. A new hobby I have taken up since my diagnosis is: blogging!
21. If I could have one day of feeling normal again I would: go-go-go ALL day long – run, climb, dance, party. I’d wear high heels. I’d stay up all night. I wouldn’t even give a passing thought to “paying for it” the next day or even week.
22. My illness has taught me: I’m stronger than I think and everyone is going through something, so be patient and kind with yourself and others.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re too young to have arthritis!” If this were true, I wouldn’t have it and hearing this just makes me feel ashamed and misunderstood.
24. But I love it when people: ask me sincere questions and want to know more about RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two I come back to: “Never, never, never give up.” – Winston Churchill; and “So it goes.” – Kurt Vonnegut
26. When someone is diagnosed I’d like to tell them: It’s tough, it’s scary, it sucks. It will get better. You will feel better than you do today.
27. Something that has surprised me about living with an illness is: the supportive community of people I’ve met (mainly through online support groups).
28. The nicest thing someone did for me when I wasn’t feeling well was: just let me cry and then ordered me Chinese food in bed and hung out all day, watching funny TV shows.
29. I’m involved with Invisible Illness Week because: I think awareness of invisible illnesses is important to funding research and finding cures.
30. The fact that you read this list makes me feel: honored and vulnerable

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A Shoe Story

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This one may be for the ladies, but I think you’ll understand when I say that shoes can be so much more than shoes. They reflect your style, they help define us to the world, and they can change how you walk, strut, and feel about yourself. So where does that leave you when you can’t wear the shoes you want? When you’re stuck with shoes that don’t reflect who you are?

Alright, the shoe story actually starts with my wisdom teeth extraction. I got my wisdom teeth – all four, all impacted – removed back in mid-June. To say healing didn’t go smoothly is to put it lightly.

First off, the initial swelling lasted about two weeks before going down (with one mild dry socket). When it finally did go down, I was ecstatic. The only problem was that the left side of my chin was still pins and needles numb, which is uncomfortable and distracting. Of course, there’s apparently not a whole lot they can do about numbness except wait.

With the swelling down, I jumped back into working out because I’d made a goal to do a sprint triathlon (.5 mile swim, 12-17 mile bike, 3-4 mile run) by the end of the summer, and I was woefully out of shape.

Then fast forward to right before the Fourth of July and suddenly the right side of my jaw was in a lot of pain again. I went to visit my dentist, who at this point was pretty sick of me. He told me to wait it out.

Finally my jaw was so painful and swollen that I made an appointment to see my dentist and a new oral surgeon in the same day. My dentist again told me to wait. So I went to the oral surgeon, who told me that the extraction was so complex, my dentist should have referred me out and never should have attempted it in office. He also said the X-rays that my dentist had been working off of were abysmal.

Well, great. Of course I felt like an idiot, because I had a similar incident with an impacted tooth in high school. My dentist at the time thought that he could do a procedure to reveal and attach a brace to an impacted tooth. Mid-procedure, he leaves me sitting in the dentist chair, awake and bloody with a mouth full on cotton. Turns out he can’t do it, so they cart me away to an oral surgeon to knock me out and finish the operation. I may just have shit luck with dentists.

I ended up switching my care to the oral surgeon, if only because my dentist and I were getting pretty tired of my frequent visits.

Anywho, the new guy was worried my jaw had been fractured during surgery, which turned out to not be the case. He sent me away saying that probably my muscle ligaments had been severed and were having difficulty reattaching because the bone they had been attached to was no longer there. So I went on my less-than-merry way, being told again to just be patient.

But then it got even worse, so I went back to the oral surgeon (bless his soul, aside from the initial consolation fee and the cost of new, more sufficient X-rays, he hasn’t charged me a dime). The OS decided to do a biopsy of my jaw and found out that I had a blood tumor (super gross word meaning that blood has been collecting in my jaw where it shouldn’t have been – also called a hematoma). So… That was really f#*king gross. He had to poke me in a bunch of places inside my cheek with large needles and drain the blood. He also found and extracted two bone spurs, pieces of bone that didn’t get removed during surgery and were trying to work their way out of my jaw. My OS put me on five days of antibiotics.

And here’s where the shoes come in: to cheer myself up, I went shopping. I found myself the cutest shoes and bought them despite not really being able to wear heels because of my RA and their uncomfortably high price. At any rate, in the store I convinced myself that I could wear heels if I wanted.

Maybe heels are a state of mind? Like if they’re cute enough, and well-made (read expensive and Italian), I could wear them. Right? They made me feel feminine and pretty, and I really needed to feel that.

Wrong. Every time I went to wear them, my feet were more swollen than they’d been in the store and it was a blow to my ego. Each time I decided sore feet on top of a swollen jaw wouldn’t make me feel better, but not being able to wear the shoes I wanted to was making me feel worse.

After that I was STILL in pain and swollen, but I guess it was more because of all the needle pokes. A couple days post operation I started getting better and I was seriously soooooooo happy. I danced around my living room beaming.

I went back to some lighter workouts, thinking that maybe I still had a chance at a triathlon in August.

Then, a week later, wham. I found myself back at the oral surgeon’s office, getting a new hematoma drained from my right jaw. Painful, time-consuming grossness. This meant another couple days of recovery and another seven days of antibiotics. Which also meant another week of not taking my RA drugs since fighting infection and restricting your immune system don’t exactly go hand in hand.

It’s been a week and a half of not going anywhere near the gym or my running shoes, trying to keep my blood pressure low, sleeping on my left side only, and trying to keep my head elevated. I’m happy to report that, today, I feel mostly fine and look normal. Yay!

As for the shoes, they met a not-so-happy end. Yesterday, I made the heart-breaking choice to return them, unworn. In the end, I decided that no shoes were better than having pretty shoes mock me from inside my closet. Begging me to choose fashion over comfort.

More than giving up my shoe dream, I had to give up my goal of doing a sprint triathlon this summer. All of these teeth complications have just made it too hard to train. Making the call to choose to give my body a break and room to heal has been hard.

Giving up on goals and dreams is not usually my style. But there’s two ways to look at it: defeat or wisdom. I’m trying to go with wisdom. (Hey, if I can’t feel pretty, at least I can feel smart!)

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My way less sexy, but pragmatic shoes.

 

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Swell, I’m Swollen

This is basically what I look like right now. 😉

You would think that someone with RA would know a thing or two about swelling. Swollen joints pretty much comes with the territory. Well, I got my wisdom teeth out on Friday and now, four days later, I can tell you that I still had a lot to learn about swelling.

First off, for all you autoimmune warriors, the logistics of getting your wisdom teeth out are a little more complex than for the average person. My rheumy had me stop all my RA drugs (methotrexate and Enbrel) one week before surgery to limit the chance of infection. Since RA drugs inhibit your immune system, it can lead to slower healing.

I was due to take my methotrexate again post-surgery on Monday, but due to extreme swelling, I decided not to.

At first, the thought of being off my RA drugs scared the crap out of me. What if I have a flare?? It turns out, your body takes awhile to catch up, so you’re usually OK for a couple weeks off your drugs. That being said, I’m going to start Enbrel back up tomorrow, even though I’m not fully healed.

I had to get four impacted (two severely impacted) wisdom teeth removed and the whole thing took a whopping 3.5 hours. Of which, they apparently had trouble keeping me “asleep”. (I blame my red hair.) Apparently I kept waking up and saying “Ow”.

Luckily I remember only one such occasion. I woke up and said, “What’s going on?” or something like that. They told me they were on the last molar and knocked me out again.

Well, the additive effect of 3.5 hours on three different anesthetics meant I spent all of Friday night throwing up and Saturday completely nauseous.

I thought the worst was over, but Saturday night, my face swelled up like a balloon. Silver lining? I now have photographic incentive to stay in shape. 😉

Now my face is still painfully swollen and I am forever grateful that RA does not (normally) effect your jaw.

When I was a kid, my sister used to make fun of my oxygen/prednisone “chipmunk cheeks”. Now I once again get the honor of that nickname. */Joy!*

If anyone has advice to hasten recovery and get the swelling down, I’d love to hear it!!

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Those Who Can’t Journal Haiku

I went to an Ignite talk the other night (a series of 5 minute talks). One guy spoke of the power of journaling, but how easy it is to fail at.

He instead recommended summing up your day in a haiku (you know, those cute little three line poems with 5 syllables in the first line, 7 in the second, 5 in the third).

Well, here goes:

Swollen, puffy feet

Summer flops are not for me

Feet long to be free

I know, I know…it’s my first attempt.

Got a haiku to share? Leave it in the comments!

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Patience Heals

There’s been times on this blog where I’ve complained or wondered about the efficacy of acupuncture. I wanted to share the very positive experience with acupuncture I had this week.

When I first took a chance on acupuncture, I went to an eastern medicine school close to me. They were VERY affordable, at only $25 for acupuncture or herbal recommendations. The only problem was, it was never relaxing.

The students weren’t always sure of themselves and the teachers who answered their questions were teaching more than treating me like a human patient.

And then after they stuck me with needles, they would leave and I could overhear them chatting with fellow students in the hallway. It was not relaxing at all and, being new to acupuncture, I would have panic attacks when they left me in the room.

I gave this clinic about four chances and then pretty much swore off acupuncture. Then my friends started recommending an acquaintance of mine who had just started her own practice. They weren’t just recommending, they were raving.

So despite the hour drive and much higher cost, I decided to go see her. I bought a five session package to save money. So there I was, committing once again to something I’d tried and given up on. I’m so glad I did.

Off the bat, the experience was more caring and relaxing. She took time to go over every bit of my history, from medical to personal, in a very human (read: not just doctor to patient, mhmm, mhmm) kind of way. I found that leaving her sessions would at the very least put me in a better mood. I couldn’t say with certainty that it was helping my RA though.

And then, last week, something very miraculous happened. It had been about three weeks since my last session with her, and I’d been struggling with joint pain and all over aches and fatigue pretty consistently for about a month. I was bordering devastation because I had been feeling so good before and during my March trip to Spain.

Not to mention, I had consulted with a doctor in March who had given me the go-ahead to get off methotrexate since I was doing so well. My constant pain that seemed to getting worse and worse was making me really nervous about getting off MTX, so I haven’t done it yet.

So last week I go to her and tell her the positives – my digestion’s been great, my wrist is no longer shooting nerve pain up my hand – and the negatives – I’m stressed and freaked out, achy all over with pain points in my joints, and struggling with fatigue.

We chatted and she stuck me with needles and let me relax (yes, actually relax) for about thirty minutes. By the time she took the needles out  and I left her office, I felt like a new woman. I wasn’t in pain.

Over the last couple of days, I’ve had mild pain in specific joints – my left wrist, my right foot. But that is more par for the course and hasn’t stopped me from signing on for training for a sprint triathlon or running a 15k benefit run for Boston yesterday. The mysterious, horrible, unrelenting all over achiness has lifted.

I don’t know if it was actually being able to relax, or venting my problems, or the needles, but I’m so happy I could kiss her. 🙂 I settled for sending her this card:

I have now decided to buy 10 more acupuncture sessions with her. I hope each one is as magnificent.

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When Chilly Isn’t Just Cold

I have been meaning to write a post about Raynaud’s Phenomenon and Chillblains for some time. So why not today while I’m watching snow fall peacefully and thinking, that won’t be good for my toes.

First off, for those of you that don’t know, Raynaud’s is a circulation condition in which cold temperatures or strong emotions cause blood vessel spasms that block blood flow to the fingers, toes, ears, and nose. Meanwhile, Chillblains is a tissue condition that occurs with cold exposure, causing redness, blisters, pain, inflammation and itching.

For me, what this actually means is that I have struggled with cold hands and feet from poor circulation my whole life. When I hit puberty, this translated into my hands and feet occasionally (usually at really inopportune times, because Raynaud’s can be associated with emotion) turning really spectacular shades of blue, red and purple. In my late 20’s, the most common symptom is losing all blood flow to my hands and feet when they’re extremely cold or in high altitude. This causes them to go white and numb.

Then, this year rolls around and my toes are now prone to the really painful, unattractive blisters associated with Chillblains after cold exposure. Fun!

I’m only writing about this because it took me forever to diagnose these two problems. When I first got Chillblains, I thought I’d had a run-in with a troop of vicious spiders that had bit up my toes.

Now, unfortunately, the only treatment I’ve been prescribed is avoiding cold (Ha! Who are we kidding? I ski and snowboard… and I’m training for a marathon in the winter). Other tips include warming your extremities slowly when you come in from the cold (much like frostbite). I’ve also found putting witch hazel on my toes twice a day helps a little.

Though my doc says these are two separate issues from Rheumatoid Arthritis, I’m not convinced it’s unrelated. I am curious how many of you autoimmuners out there also suffer from circulation issues? If so, any tips?

AND, in case you didn’t see my last post, please consider donating to help me reach my goal of raising $500 for autoimmune disease research and running my first marathon! I’m only $200 away!
Donate Now

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Progress

Pic from goodfon.com – follow the link to get it as a wallpaper (I can’t vouch for the integrity of the website though!).

I went snowboarding on Saturday. Snowboarding is something that started hurting me years before my diagnosis – ankles, wrists, bottom of feet. If there was any early indication that something was wrong and I had RA, it was snowboarding.

Of course, I didn’t ever go see a doc because of the pain I had snowboarding. I switched to skiing instead.

So Saturday was my first time on the board in two seasons (except for one extraordinarily painful run last year). I’m hmappy to report, it went great!

I only had pain in my feet at the very end of the day, after about 12 runs.

I was elated about this. I felt so powerful and back to myself. I guess I have to give credit where credit’s due: perhaps the drugs are working their magic in ways I don’t appreciate in the day-to-day.

I felt so good, I was able to follow up Saturday with a pain-free day of powder skiing on Sunday.

Hell yeah. I’m appreciating my life today and all the help I’ve had to get me to this point.

One more thing: I have really bad circulation (Raynaud’s Phenomenon & Chillblain’s), so I get painfully cold toes. A skier on the gondola recommended trying SuperFeet insoles to keep my feet warmer. They make comfort insoles too for everyday walking. I haven’t bought them yet, but I think I’ll give them a try, both in my ski/snowboard boots and my everyday shoes.

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The Good, the Bad, and the Ugly

A lot has happened since my last real post, so bear with this, cause it’s gonna be all over the map…

The Good – Marathon Training

Last weekend I ran my 20 miles!!! This was my peak goal for training before my marathon. I’m going to do one more long run (16-18 miles…hopefully 18) and one more longish run (12-14 miles) and then that’s it… Marathon time!

The run itself went pretty well. My training buddy came up and we ran all quadrants of my town – a serious whirlwind tour including bike paths, trails, roads, and pit stops at a grocery store and a rec center (did not do good things for our time).

Mile one was hard, but it usually is. My new-found asthma was flaring a bit, despite the inhaler I’d taken before. The asthma went away pretty quickly though. Then I got into a groove and miles 3-12 were breezy. Mile 13, not so hot. Miles 14-16, feelin’ grand. Miles 16-18, the wind started blowing and I was struggling a little. Miles 18-20…REALLY AWFUL (I didn’t want to tell you that, but it’s true). Suddenly, my body started hating me – knees, outer hips, numb toes, and, man-oh-man, the bottom of my feet ACHED.

Not a great note to end on, but at least I did. The marathon’s gonna be tough, but I’m confident I’ll cross the finish line.

On another note…

I had my three month check-up with my rheumatologist.

The Good – No New Damage

My new set of X-rays show no new damage! Hooray! Gotta hand it to all those scary drugs I’m on for keeping more bone erosion and permanent damage at bay!

The Not-So-Good (I know, I said bad in the title, but I don’t want to be that negative)

My general pain and inflammation level is not approving much lately. In fact, I think it’s worse than three months ago. Remember my left wrist? Well the thing doesn’t exactly look or behave normally still… About a month after the cortisone shots, the skin where the rheumatoid nodules had been became rough and colorful (red usually, but sometimes white or purple). One time, my mom even asked me, very concerned, whether I’d burnt myself.

Aside from seemingly scarring my skin, the shots worked pretty well for awhile. Over the last month, my wrist bone seems more and more swollen. Now it’s gotten to the point where I think it’s pressing on my nerve, sending a shooting nerve pain up the left side of my hand at really fun, inopportune moments.

Given the way my skin reacted to the shots, my doc doesn’t want to treat the swelling with another shot. In the end he recommended more methotrexate. That’s right – the drug that’s freaking me out right now because of its connection to interstitial lung disease? More of that.

He did talk to me about MTX and ILD. He assured me that he reviewed my chest X-rays and doesn’t believe that just because I had ILD in the past, I am more likely to get it again. He also said the chances of getting it are very low. It’s reassuring to me that he is aware of the risks and made the call anyway.

He also said he didn’t want to put me on methotrexate-alternative luflumonide because it causes birth defects (as does methotrexate), but takes even longer to leave your system than MTX. Given that I  don’t want to give up on having kids someday yet, that reasoning sounded all right to me.

Either way, I’m still trying to get that second opinion. No appointment yet, but I sent the referral in and now I’m waiting to be approved.

The Bad (Sorry, it’s not all sunshine and rainbows…)

My doc says 10-15% of his patients are on a biologic alone and not taking it along with methotrexate. This number is really disappointingly low to me. As is the number of patients in remission who aren’t on drugs (to be honest, I didn’t even ask). I know I should be grateful that there are drugs that help as much as they do. I just don’t want to be on them for the rest of my life. This may sound negative, but I want you to know that I feel pretty good about the research being done on RA and the chances of better treatments and a cure in the (hopefully my) future.

Also disappointing is that rather than decelerating my meds because of my outstanding remission (I wished), I’m upping my methotrexate once again. I’m now up to 10 happy little yellow pills per week. This has made me majorly bummed, which brings me too…

The Ugly – The Weepies are not just a fantastically sad indie band

For whatever reason, my disappointment at being where I’m at a year post-diagnosis is manifesting itself in a major case of the weepies. Luckily, it’s mainly been reserved for my boyfriend, two close friends, acupuncturist, and therapist, but that’s too many people for this girl. The only thing left is to admit it to the blogosphere and hope that by sharing, I can cultivate some of that Kris Carr wisdom and move on with my life.

I know that things aren’t all bad. I’ve made major progress since being diagnosed. I rarely feel stiff in the morning (I think my pain scale may differ from non-RA’ers, but there was a time when mornings meant that non of my toes would bend for an hour…making walking comically difficult.), my energy and GI issues are generally much better, my feet are not nearly as swollen or painful. I’ve become a bit more of a bad-ass because now I can inject myself and know that I’m a hell of a lot more resilient than I knew before. I also am halfway to med school given all the research I’ve done… 😉

But there are these moments, like today when I struggled to zip my right boot up because my hand wasn’t cooperating, when I have trouble seeing the good. There’s like this echo chamber in my mind of negative thoughts that can drown out all logic if I let it.

I for one am not going to be celebrating the one-year anniversary of my diagnosis drowning in negative thoughts and grieving something as dumb as a zipper. I’ll be in Barcelona running a marathon and celebrating how far I’ve come. Thanks to all of you for cheering me on. Wish me luck. 🙂

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