Bride of Frankenfoot 3

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.

JMT: Part 1

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.

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

Bride of Frankenfoot 2

Content warning: post op foot surgery photos below

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.

Bride of Frankenfoot

After two long years, I’ve finally completed Bride of Frankenfoot [BOF]! Two years ago I had the bunion in my left foot shaved off, my foot broken and realigned, and some messed up cartridge removed. The new and improved foot was dubbed “Frankenfoot” by my best friend. An election, a few hikes, and two years of teaching (during which I rarely sat) later, it was finally time to get my right foot fixed. BOF was completed yesterday morning by one of the best orthopedic surgeons I’ve worked with. While I wish I was able to hold off until after the midterm elections, so I could continue volunteering. I needed to get this done before losing my secondary insurance when I turn 26. Foot modifications are not cheap, my first foot was $13,000 before insurance and I neede to be sure that I wouldn’t g bankrupt over limb surgery. Luckily my two-week fall break starts next week so I’ve only had to take five days off. My husband, dog, and guinea pig have been keeping me company and I’m hoping for a rather speedy recovery. I’m so very lucky to have my husband by my side during this process, I would be so much worse for the wear without him. Additionally, I’m in much better shape as we are no longer living in a narrow townhome with our bedroom being upstairs. I’ll keep y’all updated as my foot heals up.

I’m Back Baby!

 

Hello friends! Long time no write. In my defense, I have been up to an absolutely ridiculous amount of things! Since my last post, I have entered my second year of teaching, went to Israel, participated in a statewide teacher walkout, ran for the Oklahoma House of Representatives (Made it to run-off and lost by 17 votes), worked at a Jewish Summer camp, finished 1/4 of the John Muir Trail, and adopted a rescue great Pyrenees. If this feels like a bit much, that’s only because it is. What I’m really hoping to do is get back to posting regularly and talking to other patients.

I may have (did) run myself into the ground and gave up on self-care as a whole. I’m slowly coming back from the mad dash that was election season and am looking forward to focusing on my teaching again. Another thing I am looking forward to is filing for my medical marijuana card now that Oklahoma is a medical marijuana state (honestly a miracle). I’ll report back on how the process goes, I’m really hoping to get some pain relief as well as offset some of the side effects of my medication.

I have another foot operation in a few weeks and will be updating Y’all on how it’s going. It’s time for Franken-foot to get a Bride of Franken-foot. 2 years ago I had a bunionectomy and foot realignment on the left and it made such a huge difference. After doing 60 miles on the John Muir Trail and knocking doors this election season I finally managed to do in the right foot as well. So as I said, it’s time for Bride of Franken-foot to happen.

TL;DR I’m unbreakable, busy, and writing again!

For The Spouses

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 🍀

These 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?!?!

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.

Tis But a Scratch

So I recently drove down to Texas to see my rheumatologist for a checkup. It was a bit discouraging to say the least. Right off the bat she told me I looked a little worse for the wear between my dark under eye circles and super sexy hobble. It would appear that the stress of my current course load combined with life has made for one hell of a flare. She gently suggested I take some time off of school to try and get my health back on track. I informed her that as someone in the 6th year of a bachelor’s I was going to graduate this May even if it killed me. I told her I just need to make it 7 more weeks, then off to student teaching. We did find that I am developing some hip problems on the right side. She is concerned about the potential of a labral tear developing due to the amount of stiffness and clicking. To me it almost feels like something is stuck in my hip socket, sort of like my joint has a small marble or some sandpaper in it. The rheumatologist said that we may need to look at treating it if it doesn’t improve in the next few months. She didn’t go into what treating it would entail, honestly I think we need to backburner the issue for now. The largest issue in my world right now is the crippling exhaustion. I’m back to sleeping 12 hours and feeling like I have only heard rumors of sleep. It is possible that this is tied to finally being off of my prednisone or me discontinuing my thyroid treatment [due to accidentally being over-medicated]. The current plan is to drag myself through this semester and meet with my rheumatologist in December.

GOOD NEWS [because we need some]: We figured out what those terrible side pains are! It was caused by the intercostal muscles on the right side spasming. We are not exactly sure as to what caused them initially, but an extremely talented massage therapist has been able to get them under control. More or less they now appear to be gone! I REPEAT GONE!

My friends and family have been really encouraging despite all of the current weirdness. They are seriously the best and have helped me stay afloat this long ❤