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Bride of Frankenfoot 3

Brifde of Frankenfoot week 6.jpg

Bride of Frankenfoot is about 7 weeks along in the healing process and finally beginning to look like a foot again. I had my follow up with my surgeon last week, my foot is back on track in terms of healing time. I’ll be in a boot until December 1st but can start driving in a regular shoe rather than a surgical one. I [as always] am impatient with my bodies limitations and want to be more active than currently allowed.

At the orthopedist, I saw that rather than one screw my right foot got three. I’m wondering if the damage was more extensive on this foot baut forgot to ask. I’ll be sure to mention it at my next appointment. As of Friday, that may be sooner than anticipated. On Friday a student jumped up and accidentally came down on top of my foot. I didn’t cry, swear, or faint until I made it out of the cafeteria. My pain-addled brain autopiloted me to the nurse’s office where our superstar of a secretary helped me get it iced down. We got my boot off to see that my foot was much more swollen than it should have been. I kept weight off of it the rest of the day and have stayed off of it all weekend. Due to the lack of bruising, I may or may not need another x-ray. I’ll post an update once my doctor gets back to me next week. Needless to say, I’m not doing dismissal duty until I’m out of the boot.

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JMT: Part 1

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The top of Donohue Pass where the Ansel Adams Wilderness meets Yosemite National Park.

This past summer my brother J, my dad, and I decided to hike a portion of the John Muir Trail in Yosemite National Park. We had to restrict it to 60 miles due to the Ferguson Wildfire, my fathers diabetic crash, and my need to drive back to Oklahoma to report in for work. Now 2 weeks in the wilderness may not be everyone’s cup of tea but I loved it. Highlights include:

  • Quality time with my dad and brother
  • Avoiding my political campaign for 2 weeks.
  • Learning how to effectively poop in the woods.
  • Finding out how incredibly kind strangers on the trail can be.
  • Unplugging and focusing on the moment at hand.
  • Seeing some of the most beautiful landscapes [Looking at you Garnet Lake].
  • Swimming in a freezing glacial lake.

Downsides:

  • Falling off a small waterfall, landing upside down with my arm pinned and getting waterboarded.
  • Running a few days behind and as a result running low on food towards the end.
  • Looking like Willie Nelson due to the braid situation.

My dad and I are discussing finishing the 100+ miles left of the JMT [from Agnew Meadows to Mt. Whitney and from Tuolumne Meadows to Happy Isles]. Our respective spouses think we are insane, but I’m pretty certain we can make it work. I just need Bride of Frankenfoot to heal up so I can get back out there.

I am so unbelievably grateful for my Actemra and other RA/RD medications. If you’d told me this was possible 5 years ago I would’ve thought you were taunting me. Don’t mistake this gratitude for inspiration porn [when everyone gets the warm fuzzies because ‘look at that sick/handicapped person go!]. I am simply grateful for the medical advances I have seen over the course of my illness and hopeful for what is yet to come.

So keep an eye out for me on the trail, see Y’all out there.

jmt 2

Me, my brother J, and our dad down near Agnew Meadows.

Bride of Frankenfoot 2

Content warning: post op foot surgery photos below

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Today was my post-op appointment with my orthopedic surgeon. When we took off my splint we fund that my incision hadn’t healed yet. We will have to wait another 2 weeks to remove my stitches. When I looked at my foot for the first time I noticed it looked like they had to remove more bone and tissue than with Frankenfoot the first. Additionally, the bruising was much worse and is all around my foot. I suspect the realignment was more severe this time. I’m in a boot and not allowed to bear weight until November 6th, then I’m off to the surgical shoe! The real blow today was learning that I’m healing slowly enough that I must move my monthly Actemra IV back another month. This means I will go 9 weeks without my RA medication that I should be getting every 4 weeks. Hopefully, my RA stays in control while I wait to be back on my feet. I’m working with my rheumatologist to see if there’s something we can do for the inflammation in my hands, shoulders, and feet.

While some of these setbacks really bug me, the surgery will ultimately be worth it. Knowing that my foot is going to be able to hold up to my activity level in the future is what makes this all worth it.

frankenfoot 2

frankenfoot 1

For The Spouses

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I know it’s not easy. I know that it’s difficult to be the 25 year old guy in the office who has ‘the sick wife’. As a kid you didn’t dream of one day telling your boss you’re taking a month of leave to care for your 24 year old, bed-ridden, wife. You didn’t expect to know what biologics, NSAID’s, or vestibular therapy was. I know watching me cry in pain, wrack up medical bills, and needing extra help is exhausting. Spouses of people with chronic illness deserve so much more credit than we give them.

When my husband and I met I only had one diagnosis [RA/RD] but told him upfront that it was going to affect his life if we were to date. For whatever reason he ignored this warning and I am so grateful that he did. Several additional diagnosis [Fibromyalgia/Sjogren’s] later Ethan is still hanging in there. My husband does his best to cheer me up of my most difficult days and helps me take advantage of my good ones. Ethan is my constant cheerleader who provides me with some much needed optimism on my worst days.

So cheers to the Spoonie Spouses,

RASupergirl

Hell or High Water

Thus far all field research has proved I am immortal. Well, at least more difficult to kill than anticipated. The side effects of the Benlysta lasted quite a bit longer than anticipated. The psychological impact was a surprise for all involved, luckily I’m doing better now. Through some act of god my teachers allowed me to finish my school work over winter break [well one JUST got finished]. In fact, upon receiving my email explaining the situation they had a group meeting and figured out what needed to be done in order for me to graduate on time and finish out the semester.  I realize I am incredibly lucky/blessed to have teachers who are so willing to go up to bat for me. Not a single one asked for a shred of evidence, they took me at my word. This is absolutely amazing considering the nature of my situation and how damn weird it is. Thanks to them I was able to keep my internship and am almost done with my student teaching. This is not to say there haven’t been issues.

For instance:

  • Right now I am having hip and shoulder issues and doubled up on my Celebrex.
  • I can’t feel my hands and feet intermittently due to peripheral neuropathy.
  • Steroid shots.
  • My rheumatologist wants me to seek treatment for my hands [who has time for that?]
  • I’m still getting headaches even though I just had my Botox treatment.
  • Fevers.
  • Intermittently needing my cane.

Despite this laundry list of grossness, I need to focus on my goals. My husband and I are buying a house [we move in 3 weeks, I have packed nothing], I graduate in a just over a month, and I am fielding multiple job offers. These are all things I had at one point or another seen as impossible. These are the things I strive for, this is what beating RA looks like. I know I will never be who I was before I was sick, just like I know there is no cure. My definition of beating RA has been altered, I once thought that meant a cure. I now know that beating RA is living your damn life.

Lucky 🍀

xxx52bzThese past few days I have been trying to focus on the good. I am lucky that I didn’t get something worse in my IV. I’m lucky that I have the friends and family I do that support me. Honestly if I didn’t have the support system I do, this would have been a devastating hit. While this is no means ideal, it is not going to be the end of me. I have worked with all but one professor to ensure my ability to work from home and finish out the last few weeks of of this semester. My professors have rallied around me in a way I had not anticipated, for this I am eternally grateful. I owe all my professors so much for how gracious they have been regarding the situation. I am hopeful that I will be able to finish out my semester and begin my student teaching in January as planned.

Now as far as the physical symptoms from the Benlysta go, they have been pretty consistent. I have been sleeping between 13-16 hours and waking up exhausted. I have a hefty dose of headaches and nausea. I have been drinking stomach soothing tea and eating candied ginger like no ones business [I strongly recommend both for medication induced nausea]. Thankfully the chills have let up but I am still rocking a fever. Hopefully things will start to level out as my body has a chance to process this crap out of my blood. We will see how things are going once we start running labs.

 

You Did WHAT?!?!

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Dear friends, something terrible has happened, let me explain.

Today I received a call from the infusion clinic I go to informing me that they accidentally gave me the wrong infusion. That’s right THE WRONG CHEMO ENTIRELY. They informed me that I received a round of a high dose Lupus drug called Benlysta. My doctor then told me I couldn’t receive my actual RA infusion for a month. I am already in survival mode so this is quite the disaster. The doctor told me in her 10 years she had never seen this happen, the RN at the IV center said never in her 11 years, and finally the hospital told me a switch like this has literally NEVER occurred. Lucky me. The Benlysta they game me has given me some pretty gross nausea, fever, chills, and headache, luckily that seems to be the extent of it [EDIT: it was not, there was more crap]. I am still livid with the hospital for making such a preventable mistake. For christ sake it passed through 3 checkpoints and no one caught it. I am pissed off that things are about to go sideways and there isn’t a damn thing I can do about it. Moral of the story, I am literally the unluckiest patient in Oklahoma.

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