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Write It Down

Thursday, March 15, 2018

Three people in the last 2 weeks have told me to "write it down." My doctors want me to keep logs of pain, my therapist thinks writing things down is a good way to keep track of trends, and I've been trying to food journal again. But it wasn't until having a conversation with my massage therapist today while he was working out some kinks that it finally clicked - the thing that has been missing in my various attempts at losing weight and sticking to a plan for the past 5 years has been my lack of writing. He said again "you need to write this stuff down, not just for you, but to add at least something to the collective web of information that we're now amassing about these conditions and pain and your personal experiences and the responses and work that you've done to get to the root of the problem." So here we go...

Flashback to April 15, 2010. My first day on SparkPeople. I don't think I wrote a blog that day. I may have. What I do know is that the first blog that I did write was about poop. Hey - you gotta get it all out somewhere! But it's symbolic! Writing has always been a great release for me and it only makes sense that writing while I was trying to lose weight was a) a stress relief and a catharsis (many blog posts were written through tears - both happy & sad), b) a place to compile my thoughts about what I was doing, even when those thoughts weren't always fully formed, c) a great gauge of my own crazy - comments on my blog kept me on the right path, if I was thinking something unpopular or self-detrimental, I was usually encouraged in the other direction by some wonderful people here, d) a terrific record of my moods, my accomplishments, my struggles, and even my ridiculous optimism (I even annoy myself when reading back through some of my blogs when I was around the 100-pounds-lost mark).

But all of that just goes to show me how NOT in the same mind frame I am right now. I don't need to be the eternal optimist - I'm here to tell you that sh*t happens and life goes on, even when you SWEAR you'll NEVER over and over and over again. Well, never is now. I'm 280 pounds again and that was after I said I would never see the 200s again, never gain all the weight back, never stop running, never buy plus size clothes again, never have to ask for a seat belt extender ever again. After all, I was DONE being the fat girl. Nope. I AM the fat girl. I think now that I will always be the fat girl. I just want to be her in a smaller, healthier body. In 2010, I started at 313 pounds. I really don't want to gain it all back. I'm 33 pounds away from doing just that.

So brace yourselves, cause this is long, but this is where I am now - for the record.

- Between April 15, 2010 & April 15, 2011, I lost 100 pounds here. You can read all about it. I went on to lose another 30-ish pounds and hit my smallest ever adult size of 180 pounds.
- In 2012, I trained for and ran the Chicago Marathon. It was incredible.
- In 2013, I trained for and completed the Chicago Triathlon. I finished 6th in the Athena Division. It was incredible. I had gained some muscle mass and was 185 pounds when I finished that race. I had also discovered that training that hard meant that I could eat and drink whatever the heck I wanted with very little affect on the scale.
- In 2014, I trained for and finished a Tough Mudder. It was hard. I didn't compete as well as I wanted to because the training was starting to get to me. Pain was setting in. I was about 190 pounds at that point and my boyfriend at the time had to help me through a number of obstacles. He was proud of me. I wasn't. I was sad that I had given him my training spirit and then lost it for myself.
- In 2015, I opened my own business. 6 months later, I lost my business partner and broke up with my boyfriend. I was devastated. I was terrified for my business. I gained 30 pounds. I was incredibly proud of my work accomplishments, and incredibly disheartened to see the 200s again.
- In 2016, the on-again-off-again relationship with my ex blew wide open when he left me alone on Christmas Eve to spend the holidays with his family with no notice. We were to have spent the holiday together and I got his text message when I was in the grocery store buying food for our Christmas Eve dinner. He told me 7 days later that he was seeing someone new, he was already in love with her, and she was moving in with him. I ate both our servings of dinner that night and continued to drown my feelings in food through most of 2017 while intermittently "training" again by attempting the C25K program a couple of lacklustre times. I gained another 40 pounds.
- In 2017, my business began to boom. I was finally coming in to my own as a business owner and gaining confidence in my abilities in the business world. I used it as an excuse to throw myself in to all aspects of work and completely ignore my eating & drinking habits. I fad dieted. I tried a Whole30. I lost 10 pounds in a month and then gained back 20. I trained for and ran/walked the Shamrock Shuffle. And that was when I knew something was wrong...

Back when I was training for the marathon, I developed what I thought to be bursitis (undiagnosed) in my right hip. Over-training injury, I thought. No big deal. But it never really went away. Through the Tri, the Tough Mudder, and the few subsequent races I tried to run (a couple half marathons, some 5Ks), I would experience bad flare-ups, horrible stiffness after running, and constant pain in my hip with any exercise I tried to do. Gaining weight obviously wasn't helping, but I was putting all the blame on that and not on the exercise. I mean, it's my fault all the weight is back, so of course I'm bound to be paying for it physically. If I could just lose 10, 20, 30, 40, 50 pounds, I'm SURE I'd feel better.

By the time I had finished the 2017 Shamrock Shuffle, I spent the next few weeks unable to get out of bed or off my couch, in horrible, searing, throbbing pain. It went between episodes of sharp & shooting, to dull & burning, but it was constant, it was wide spread, and I was MISERABLE.

My brothers had both received recent diagnoses of "Ankylosing Spondylitis" from a rheumatologist. I begged my PCP to refer me. She read me the riot act - "you know that it's a pain for my staff to get you referrals if you don't go to the specialist." I wanted to slap her. To her I've always been "the fat patient." "Of course I'm going to go. I'm asking you for the referral!"

My first appointment with the rheumy was great. He listened to my history, felt around my back (specifically my SI joint - sacroiliac joint), did a couple of pain tests, looked at my skin, and gave me a diagnosis of "Psoriatic Arthritis." We started the process for approval of Humira (a TNF inhibitor) immediately. After what felt like an eternity, I was approved, contacted by my new Humira nurse, and taught how to inject myself every other week with this new drug. And for the first 6 weeks, IT WORKED! I felt my pain start to melt away.

And then, all of a sudden, it stopped working. The pain came back. It wasn't as bad as it was in the beginning, but it wasn't gone, and it certainly wasn't livable. And now, my achilles was added to the mix. For whatever reason, I woke up one morning and couldn't put pressure on my right ankle. I didn't twist it. There was no trauma that I could remember. It was just, there. My doctor suspected a spread of the arthritis to a new joint, so he referred me to a Orthopedic specialist and decided that we should try a booster drug called Methotrexate. It's a cancer drug meant to break down cells to allow the TNF blocker to attach to the cells more efficiently. But it's a SCARY drug. If you drink while you're taking it, it can destroy your liver (I own a bar...) If you get pregnant while you're on it, your child will likely have horrid birth defects. It made me horribly nauseous every, single day. And the list goes on, and on, and on. And it didn't work. So thankfully, I was removed from it and introduced to TNF inhibitor #2 - Enbrel.

Enbrel put me in the hospital. I had a scary allergic reaction to it (which apparently is common with Enbrel) on my second dose. One expensive emergency trip and a bunch of Benedryl later, no more Enbrel.

By now, it was Christmas again, and over the holidays, I was on nothing but a metric crap ton of Advil. The pain was back and was angry. I sobbed to my parents over New Year's while they were visiting because I was just so frustrated and couldn't take the pain one more day (I did take it for many more days...) My rheumy asked me to choose my next TNF inhibitor to try - another at-home injection with varied success rates, or an in-clinic infusion, delivered every 8 weeks called Remicade that both of my brothers are on and have had total success with.

I chose the Remicade. Even though it involves clinic visits and it wasn't my doc's next choice of treatment, I had to put some faith in biology and choose a method that seemingly works on the rest of my gene pool. So after the start of a new calendar year and thus a new health plan, I started my loading doses of Remicade at the end of January.

In January I also started physiotherapy for my achilles. The diagnosis there was "tendinitis at the attachment" which could be seen in the x-ray. 3 weeks of 2 expensive sessions a week did NOTHING for the pain, so I stopped. And again, grew increasingly frustrated.

By the end of February, I'd had enough. I had received 2 doses of Remicade at this point and from what I could tell, it wasn't doing a damn thing. My hip was throbbing and angry again on a daily basis because I had decided that I just HAD to exercise and put myself back in the pool. But even swimming, while an activity that I LOVE and that makes me feel great immediately after, was causing extreme pain and stiffness about 2 hours after getting out of the pool. I told my rheumy that I was beginning to doubt his diagnosis. Nothing seemed to be working and EVERYTHING HURT. I had done some reading on my own about a condition called Piriformis Syndrome and decided to ask him about it.

It was then that he said that I might have a point. He asked me for some time to speak to a friend of his who is a Sports Medicine & Orthopedics doctor, and told me again that I needed to be patient with the Remicade. Until I was done my 3 loading doses, it was going to be very hard to tell. He put me back on Methotrexate but in a smaller dose to fight the nausea, told me not to be a lush but to have a couple drinks a week if I wanted to, and to keep him posted on anything I found out from his Sports Med friend. I made an appointment immediately.

Last Friday I met with my new doctor at the Sports Medicine clinic. He took an x-ray of my hip and confirmed that the good news is that there is no sign of any deterioration due to the arthritis in the joint. I asked him if that meant that I didn't have arthritis. He told me to trust my rheumy on that one. Said that he is VERY good at his job and that if he had reason to believe that I have it, then I likely do. So we're holding the course there. Then he told me to point to where it hurts. I did, and said "here, but deep." He put his thumb on a muscle in my hip and pressed - "Like, here?" I jumped about 7 feet in the air. "HOLY MOTHER OF ALL THINGS, YES! THERE!" "Thought so," he said, "let's get you an MRI and get to the bottom of this pain."

Now, I've been asking my rheumy for an MRI for a few months now and he wouldn't give me one. Said that he was sure it was going to come back inconclusive for anything that he was looking for. So I queried my new doctor friend. He confirmed that it was the right call. If my rheumy had ordered an MRI, it would have been of a different area of my back, and without dye contrast, so he wouldn't have seen what this doctor is specifically looking for. This doctor is looking for a condition called "gluteus medius tendinopathy, or trochanteric bursitis" - WHAT HAVE I BEEN SAYING SINCE 2012?!?!?! My insurance approved the MRI immediately and my appointment was made for today.

So, it's been a busy week. Yesterday, I went in for my routine blood work (when you're on TNF inhibitors, you have to have blood panels done every couple of months since they can affect your liver and kidney functions and white blood cell count, opening you up to a number of infections and illnesses - basically the type of arthritis that I have is caused by an over-active immune system, so these drugs knock it down a few notches), and then had my 3rd loading dose of the Remicade. My next dose won't be for another 8 weeks now. And... I think it's working. Once I was able to separate my hip pain from my back/ankle/other pain, I was able to more clearly focus on what was hurting and what wasn't, and I'll tell you, my back and ankle pain were almost non-existent today. Hurray! And then today, I went for my MRI with dye contrast. I got to watch, Grey's Anatomy-style, on the x-ray scan of my hip while they inserted the catheter and then the dye directly into my hip joint. Tingly! Then once that was done, I spent 25 minutes in the crazy-loud MRI machine, getting my body scanned. They handed me a disk of my scans and I'll meet with my doctor for a follow-up, diagnosis, and discussion of treatment on Monday. Then I went and had a massage. Which is were my awesome massage therapist prompted me to do this.

I feel better. I do. I feel like I'm finally in a place where I'm going to get some answers. I feel like I'm so-close to being more pain-free. I feel a little more optimistic each day, like I'm finally coming out of a 2-year long depression. I feel like I CAN do this again.

And how funny, this place where I have recorded my patterns - a lot at first, and then, periodically when the mood struck me. Look at the dates of my last 5 blogs if you so desire. Must be something about Spring. April 15th is coming.
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Member Comments About This Blog Post
    1223 days ago
  • ALOFA0509
    emoticon emoticon

    It's been a long trying journey for you Jen!! I'm soo happy your medical team has found a way to ease this chronic pain you've been in for soo long. You never gave up. You kept fighting, and that's what you do. Once this pain is managed your gonna step right back into doing your thing!!! Excited for your New Spring Beginnings emoticon emoticon .. emoticon emoticon emoticon

    emoticon Cheering 4U
    1229 days ago
  • no profile photo CD4764832
    WOW! You have been through so much these past years but I am so glad you are back and willing to share your ups and downs. You inspired me to do half marathons, your blogs helped me with training. Your spirit and writings are always insightful and raw and just all around inspirational!

    Writing things down is so helpful and great, I know, I have been through the therapy to know you have to do it, but it is hard! But your writings helped me too!!

    I wish you nothing but the best and anything I can say or do to help, just ask me! You are just amazing!!!! Girl Crush!!

    1235 days ago
  • no profile photo CD7875431
    I love you Jenn. Across time and space ... and all the shared experiences (wow...)

    Thinking good thoughts for your next days and weeks.
    Looking forward to seeing you some - and grateful beyond grateful for the beauty and integrity of your writing.

    In Chgo this month, too!
    1235 days ago
    writing it down is not only informative but also therapeutic

    good luck to you
    1236 days ago
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